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Aussie Barb Research Team 
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Aussie Barb D's This thread is sequel to Benicar Only @ Aussie Barb's Progress Report No Headaches! Headache relief since on MP Aussie Barb on the comeback trail Quercetin saves the day!! Dream page 21 Sunday November 7th Benicar: now 12 weeks 20mg now Q3h Day; 40mg @ 9pm 7H Mino: Sept 10th to Oct 3rd: from initial dose of 1.5mg up to 12.5 mg & stop due to no NoIRs: the mino stint being @ Aussie Barb Page: 1 2 3 then continuing on Benicar Only. Took dose # 1 x 3mg mino 5 am. AUSSIE BARB EDIT: These Mino doses are no longer used as starting mino doses.. as they were found to be detrimental to MP progress.. which you will plainly see if you continue to read this thread.. Please see PHASE ONE MARSHALL PROTOCOL How to start the Marshall Protocol for up to date mino dosing.. beginning on Mino 25mg.. thank you... |
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Big John Member in Phase 2/3 
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Hi Barb!  Welcome back to this part of town! Knew you were comming and saved a space for you right next to me!  So that I can tell Rennie when you misbehave. John Smiling is optional! Barb edits & says ... I be smiling then.. bein' right next to you... thanks John xox .. |
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Aussie Barb Research Team
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7.45 am.. I have been in bed to minimise the feeling of this. My immediate & bearable symptoms to the mino dose are: chest feels aura & shuddery but no actual shudder. body feels shivery & weak. not cold and no actual shiver. itching skin, more esp behind ears...  gut inflammation has moved up a notch again.. all interesting.. 9.40 am edit: most symptoms past. 10.15 am edit: IBS & inflammation rising. need Benicar earlier. taken. 12 MD edit: have been resting / nap.. now chest aura only. Last edited on Sun Nov 7th, 2004 02:06 by Aussie Barb |
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Aussie Barb Research Team
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Thank You to All @ MP.com Being part of this Community has been so good for Me Personally. To have met Wonderful, Good, Intelligent People as You are has been Truly Very Uplifting for Me. I Thank You... Barb... |
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Aussie Barb Research Team
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Monday November 8th 9.15am Day 2. Mino dose x 1 x 3mg yest. Benicar: 20mg Q3h Day; 40mg @ 9pm 5H Following on from the 12 MD edit previous posting No more herx symptoms yesterday. I decided yesterday evening that as it was nightime, no sunlight, I could wear my NoIRs & go out for a drive with Husb. I found that I am very weak & sick to try to negotiate the *real* world .. but it was lovely to go out in the night air, windows down, slight rain, beautiful weather, wild parrots chirruping in the Palm trees in the Business area... The inflammation woke me @ 2am for more Benicar.. was 5 h since 40mg dose. relief. No IBS!!!!! I am amazed.. this feels a lot better. No Q @ this point.. just seeing how I go. resting resting.. all is well. will take more mino tomorrow. |
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Aussie Barb Research Team
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Tuesday November 9th 8.40am ish Day 3. Mino dose #2. took 4mg today. Benicar: 20mg Q3h Day; 40mg @ 9pm 7H Chest aura for hours yesterday afternoon. annoying pressure in bottom & lower pelvic last night. Slept well. woke feeling a little better this morning. took 4mg mino 5 am. throat feels *inflamed, otherwise no extra symptoms at all since. |
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Aussie Barb Research Team
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continuing Tuesday November 9th 3.15pm ish Day 3. Mino dose #2. took 4mg today I have no herx symptoms today. I feel a little better since having the mino again. so I am happy. the mino has restimulated my body. I usually suffer from uncomfortable paralytic IBS from toxicity. A new experience for me in the last couple of days, has been the occasional feeling of my bowel feeling *relaxed*.. what a relief. |
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Big John Member in Phase 2/3
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Yeah! Barb is doing well! Remember |
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Aussie Barb Research Team
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Thursday November 11th 9 am ish Day 5. Benicar: 20mg Q3h Day; 40mg @ 9pm 6H Mino: Sept 10th to Oct 3rd: from initial dose of 1.5mg up to 12.5 mg & stop due to no NoIRs: the mino stint being @ Aussie Barb Page: 1 2 3 then continuing on Benicar Only. Recommence Mino now day 5. New Summary: I have spoken about how my herxes have not been *dramatic. how the ABx seemed to be *hiding & *building a bomb, which continued to rumble for the month after no mino. seemingly having herx symptoms, flared inflammation, paralytic IBS, sick, miserable for the month, mild itching. that I have felt to be herxing or toxic & detoxing. I had a sweet body odor from all of the above. My body has always gone into killing spree on treatments. I have always been able to trust that I can read my body, but have not always been able to have the meaning confirmed till later... MP has given me the protection of Benicar. Dr Marshall advised me >> "I would expect the sweet body odor to be Nitrous Oxide (NO). Your Blood Urea Nitrogen (BUN) almost always rises while the bacteria are being killed. Sorry that the dosage-control of herx is not working very well for you at the moment. It is common that once a new 'patch' of bacteria are 'exposed' that they keep on dying. Often the herx is less if you are taking a little minocycline, rather than none. Let's see how you go with that. You can sometimes increase the mino frequency to every 12 hours (keep the dose the same) to try and control any problematic second-day herxing. Once the herx is under control you can then gradually change back to the q48h protocol most effective for killing the bugs... " << & Note re emergency repair to NoIR till replacements: > "Yes, The NoIR side pieces are brittle. I repaired my set by binding the break with a piece of fabric, which I then soaked with instant glue. When the 'splint' had set, the glasses were usable again." <<< Since I have begun the mino 12 hour x 4mg dosing, my symptoms have definite relief for 5H & up to 7 hours after the dose. The NO is still coming from me. . Rx mino @ 4mg x Q12H <<-special protocol not to be used by other PWC just yet .... used to DELAY the bacteria killing ... not to be aspired to. Barb |
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Aussie Barb Research Team
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Sometimes thru the night I will have a tendency toward an *almost cramp when I stretch. If I take the Benicar I am ok. |
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Lilly Member in Phase 2/3 
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Well, you sweet-smelling thing , I hope you're going to have a smoother time of it this time around. My ex-husband always liked to sniff my face. I wonder if it was nitrous oxide? , lol.Good luck, and hugs, Lilly |
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hrts4me Member in Phase 2/3 
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Barb says>>> Dr Marshall advised me >> "I would expect the sweet body odor to be Nitrous Oxide. Your Blood Urea Nitrogen (BUN) almost always rises while the bacteria are being killed. and Since I have begun the 12 hour mino 4mg dosing, my symptoms have definite relief for 5H & up to 7 hours after the dose. The N2O is still coming from me. . Lilly says>> My ex-husband always liked to sniff my face. I wonder if it was nitrous oxide? I am confused as you folks are saying N20, Nitrous Oxide--which is laughing gas? I was concerned about Nitric Oxide (NO) being increased with the use of Benicar, in those (patients with CFS, FM, and others) that according to Pall already have too much Nitric Oxide (NO). Thus increasing NO toxicity. hrts |
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Aussie Barb Research Team
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hrts, I am not a chemist. so I have edited my previous post. sorry to confuse. The Benicar is my Protector and has been wonderful for me. Compared to any other treatment I have had without it!!! I am streets ahead. I am still a work in progress. My body seems to have been kicked off into a killing spree which I'd have never withstood without the Benicar. My experience is individual in that I interrupted MP when I ceased the mino when I was without NoIR (see above) ... and my body was on the killing spree.... so all my experience is *skewed* ... ie to be trying to come to any firm conclusions yet. I have been taking the 4mg dose mino to try to *pull it up*, and was unwell, so took the 12mg dose last night to see if that would be better for me, and I have picked up overnight. I'll write a report later. Barb ... |
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Dr Trevor Marshall Research Team 
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hrts, You are dead right. It is fundamentally an NO release from the bacteria. BUN usually goes up pretty high until the bacterial load is worked down. ..Trevor.. |
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Aussie Barb Research Team
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Saturday November 13th 6.30am ish Day 7. Benicar: now 13 weeks 20mg Q2h day yesterday; 40mg @ 9pm 6H On Thurs morning I wrote >"Since I have begun the 12 hour mino 4mg dosing, my symptoms have definite relief for 5H & up to 7 hours after the dose. The sweet NO odor is still coming from me." Friday morning 12 hrs from last mino dose, I woke and thought I may have been out of the killing spree and *well enough......the odor seemed to be decreased... & maybe I can wait 48 hrs now to begin qod mino dosing... became sicker thru the day.. and I took Benicar q4h to help,*sick, terrible gut pressure, paralytic IBS, so I knew I was not thru it yet.. I took Quercetin combo (still all that I have here, no mail yet! almost 3 weeks) no relief. 8pm I took another 4 mg mino .. that was 24 hrs since the last.. no relief. so I took the remainder to make it 12 mg and went to bed. woke for my Benicar @ 6h, slept, woke ok... what to do now? I will wait and see what I think... mino x Q12H <<-special protocol not to be used by other PWC just yet .... used to DELAY the bacteria killing ... not to be aspired to. |
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Aussie Barb Research Team
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Saturday November 13th 6.30pm ish Day 7. continued .. Benicar: today 40mg Q6h (ie. changed today) Well, it has been a day and a half today. I was thinking I may stabilise more quickly than I am. I took another 12 mg mino this morning. & will take another dose tonight. Today I have been pushed to my very limit of bearable with the pressure in the bottom. this afternoon, I had the antbite cramp across my right ribs and down right arm. it was painful enough to make me cry, but was still managable, I was Ok. My husband came with the Quercetin combo and >> relief!!! the left rib muscle *lump has been burning again. and the gut inflammation is having a wonderful time. At this moment I can feel all these things still around, some more in the shadows, but am feeling quite bright otherwise at last > under the influence of the Quercetin I expect. Dr Marshall has advised me > "Just keep mino 12mg x 12 hrly until you are stable, and then try to lengthen it to 24 hrs and eventually 48 hours. At your own pace, no hurry. Is important you get better, so you too can experience what it feels like " <<<..Trevor.. so I will relax and to not be thinking I need to be hurrying to be *normal* ... and ahh sigh it is easier to divide the mino only this far.. mino @ 12mg x Q12H <<-special protocol not to be used by other PWC just yet .... used to DELAY the bacteria killing ... not to be aspired to. |
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Aussie Barb Research Team
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Sunday November 14th 5 pm ish Day 8 Benicar: 40mg Q6h Ahhh a better day for me today! Continuing the mino 12mg x 12 hrly. I can feel the need of the mino getting close to the time. slept so well last night. woke feeling better, but feeling sore all over.. no wonder after yesterday! I'm still physically weak but mentally alert, as in very... gut inflammation is *there, but not any real problem. no IBS... phew... not *sick. all skin itching some and still sweet nitrous oxide odor. so will continue like this yet. all D avoidance is in place diligently, NoIRs etc.. of course .. |
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Dr Trevor Marshall Research Team
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Barb, Yes, isn't it amazing how the mino loses its ability to kill bugs, and becomes palliative, as the doses are moved closer together... It explains why the studies of mino in RA achieved only moderate success - they were using 100mg every 12 hours. But even then there was a significant remission rate at 4 years... http://tinyurl.com/5w7ce I would stabilize where you are for a while, and then try to start spacing out the mino doses again so that you can really hit those bacterial colonies... ..Trevor.. |
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Aussie Barb Research Team
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Thank you Trevor. Today the whole of body itch continues....presumably still from the BUN.... mild enough, bearable... so that I'm not seriously scratching.... I am quite happy taking my usual one day at a time.. Barb ... |
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Aussie Barb Research Team
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Monday November 15th 5.35 pm ish Day 9 continued... I slept well last night. took my Benicar @6h Today as I said in the previous post: itching has stepped up a little. but is bearable. not actually scratching. I don't feel *well, feel doughy, fatigued, sickish. can feel gut inflammation. & left rib muscle burns a little. Getting close to the 12 hr mark> mino dose time, I start going downhill, so I am not thinking of any changes to this mino 12mg x Q12H routine just yet with all this going on. not as good a day as yesterday, but I expect it is going to take time to pull me up after a month of runaway herx. and I know that my body is working so hard.. It isn't easy, but I am so thankful for Benicar, for MP. it cuts the suffering right down.. & no headaches.. mino @ 12mg x Q12H <<-special protocol not to be used by other PWC just yet .... used to DELAY the bacteria killing ... not to be aspired to. |
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Aussie Barb Research Team
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Tuesday November 16th 12.20 pm ish Day 10 Benicar: 40mg Q4h (changed) I slept from 9pm till 1.30am. woke, changed to having Benicar Q4H and have been better today. slept this morning. nice. less itch and inflammation than yesterday. not *sick. I continue to be unwell enough that I am not doing anything else apart from being on the Board and on the bed. mino @ 12mg x Q12H <<-special protocol not to be used by other PWC just yet... used to DELAY the bacteria killing ... not to be aspired to. |
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Aussie Barb Research Team
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Wednesday November 17th 5 pm ish Day 11 Benicar: 40mg Q4h slept well .. woke 4.30am needing mino @ 12hrs less itch and more inflammation than yesterday. *sick today. have to lean right back in my chair a lot of the time to be comfortable. I don't know of any change of circumstance that makes the difference from 1 day to the next.. Today I decided to try to experiment with the Pure Quercetin: Took 1 x Q capsule 2pm. felt a *coolness go thru the inflamed gut. but will wait & see more yet.. seems to be some relief. but no-one else would want to experience this gut just the same. the IBS pressure in the bottom is relieving at the moment also. when normally it would be escalating as mino time drew near. & it is past 12hrs already. This afternoon I am seeing if I can extend the mino yet? I am wanting to get on the *real* MP asap... mino @ 12mg 4.30am <<-special protocol not to be used by other PWC just yet |
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Aussie Barb Research Team
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Thursday November 18th 6.45am ish Day 12 Benicar: 40mg Q4h Q5 ½ night Taking: Quercetin Q6H to try to assist mino spacing. mino 12mg dose. mino extending; was 16 hours last night with the help of the Q. 16 hours till today's mino dose will be 12.30pm... so the aim will be to try to do that or a little more if symptoms allow.. I will rest as much as I can to try to help this along. I want to get to the kapow herxing dose of mino, but will be guided by my body as to how and when to do what to get there. |
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Aussie Barb Research Team
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Thursday continued.. 11 am ish I am finding that taking the mino like this is very supportive of my body.. in that also, I am depending far less or not at all on my Natural Progesterone to uphold me.. Also I have found that taking Quercetin is helping me to get from one mino dose to the next.. otherwise I was going downhill waiting for the next dose to be due.. Just now I was feeling weak and shaky and thought to take my Quercetin> @ 5hrs... w relief.. so far today I am looking ok to get to the goal of 12.30pm for the mino. that will be 16 hrs apart for this 24 hrs. ie. my first extension from Q12hrly. this transition as Rx by Dr Marshall in my circumstances, is working well for me... |
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Aussie Barb Research Team
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Friday November 19th 6.45am ish Day 13 I have moved to the Full Protocol + Quercetin Reports today. Benicar: 40mg Q4h Q6h last night slept fairly well. woke this morning with the world swinging around. I needed my Benicar, some food, Quercetin, and to get focused, on the computer. the mino extending: yesterday I went past the 16 hrs and watched what happened.. toward 17 hrs symptoms started to rise. pressure in the bottom. so took mino 12 mg. is 18 hrs right now - spinning > am taking mino to see what happens. the quercetin qid is helping me quell symptoms and so extend the dosing. the gut inflammation is present but not really acute as it was. *antbite* on left ribs this morning. * since all this is going on, I have not been able to bear the thought of eating protein foods much, esp not chicken. am desiring lighter foods. I desire some beef. < I am interpreting this change as being from the higher BUN. the itching has decreased some and the sweet nitrous oxide body odor may be decreasing. so far I have not had / needed NPOS for 2 days. ie. no depression / misery sx. pressure in bottom now relieved by Q or mino. In doing all this I am reading a *new *book.. the book is me.. and I have to wait to see what is on the next page. |
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Aussie Barb Research Team
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re: "is 18 hrs right now - spinning > am taking 12mg mino to see what happens." half hour later, > am experiencing relief. |
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Reenie inactive member
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Barb, It sounds like you were herxing. Maybe you can't space out the mino yet.  |
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Aussie Barb Research Team
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thanks Reenie, the previous mino trip is looking now to have been one long herx on the low dose mino .. and is why I couldn't fathom where it began & ended.. it didn't.. This schedule is new ground so I am experimenting my way along and cutting a path for others.. I am Ok with pushing and trying to test it all out.. is very interesting. Barb .... |
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Aussie Barb Research Team
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Friday November 19th 2pm ish Day 13 / mino; is day 6 my special schedule 12 x 12 used to control my herx. to delay bacteria killing. I am beginning to feel some relief today.. something is lifting.. at last. I feel some Hope. going forward with mino 12mg x Q12H dosing today. +Q+B |
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Aussie Barb Research Team
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Sunday November 21st 2.15pm ish Day 8 my special schedule 12 x 12 used to control my herx. to delay bacteria killing. mino 12mg x Q12H +Q+B Benicar: 40mg Q4h day Q6h night sleeping well. I am still having transient times of vertigo. (the whole room swings around) I'm not sure why. we put a new blind in the house to make it even dimmer, - with that + as the herxing is cut down... I wonder if, as the 1,25D drops more this has precipitated it ? This would tend to show exactly how sensitive one can be to so very little change in *light* + while under the effects of herxing. I am waiting for it to run it's course and go. Taking the Benicar Q4H; and the Quercetin calls me about Q5H; gives me symptom relief. and I will continue the mino 12 mg x Q12H as is too whilever this continues. I am very happy to have all these MP meds to give me function thru this. no IBS !!! I am tired. resting sleeping. gut inflammation is still present.. but not acute.. it would be acute in anyone not accustomed to it though. I was expecting that a few days of 12 x 12 would see me on my way... I am content to follow my body in what I need to do. Best to us all .. |
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Aussie Barb Research Team
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Tuesday November 23rd 8.10am am ish Day 10 my special schedule 12 x 12 used to control my herx. to delay bacteria killing. mino 12mg x Q12H +Q+B Benicar: 40mg Q4h day Q6h night: Quercetin Q5H
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Aussie Barb Research Team
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continued ... Tuesday November 23rd 12.25pm ish Day 10 my special schedule 12 x 12 used to control my herx. to delay bacteria killing. mino 12mg x Q12H Benicar: 40mg Q4h day Q6h night: Quercetin Q5H In the past, my Immune System has been very easily started. I feel unwell enough to have a high 1,25D, and I'm taking the Benicar Q4H and diligently cave dwelling.. Quercetin Q5H. transient vertigo. I have that perception of hot pepperish in my mouth nose throat again, hot *inside me... and icy on the outside. is only perception so bearable. too unwell to risk looking for more herxing. so I think I had better be patient as I am yet.. |
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Aussie Barb Research Team
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Wednesday took mino 12mg in am.. Began mino 25mg Q24H pm +Q+B Thursday November 25th 5am ish is Day 12 my special schedule used to control my herx. to delay bacteria killing. Benicar: 40mg Q4h day Q6h night: Quercetin Q5H I have had a couple of really rough days physically mentally emotionally. Have felt to be in the perpetual low dosage herxing again.. My Inner Wisdom was telling me to take 25mg mino, but caution was telling me I was too sick to take the risk of becoming sicker... but I was becoming sicker, so I had to do something. I took the 25mg mino last night. my brain fog / head started to clear within an hour and I could plainly see why this has to be better. I still have the vertigo transiently when meds are due, which is relieved by taking the Benicar or the Quercetin whichever is due. but I am feeling better this morning than I was. Dr Marshall says > "Don't go to a higher dose than 25mg just yet, the next thing is to stretch the dosage out to 48 hourly. It might take some time (weeks) to get to that point." ..Trevor.. weeks  |
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Aussie Barb Research Team
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the vertigo: while sitting or lying still: it is swing swing.. and I can handle that much ok. it is exacerbated by turning over in bed or any fast movements. the room / ceiling swings around wump! and back wump!. I have to hold onto my head, shut eyes, and usually cry out, and be still till it passes. It is not a light symptom cos I am diligently cave bound and wearing 10% noirs fully whilever I am off the bed except to shower because all 3 meds (mino B Q ) relieve it in their turn, I am thinking it has to be disease symptom via herx.. I had it milder than this in earlier days of CFS. |
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Aussie Barb Research Team
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Began mino 25mg Q24H last night +Q+B continued >Thursday November 25th 3.15pm ish is Day 12 my special schedule used to control my herx. to delay bacteria killing. Benicar: 40mg Q4h day Q6h night: Quercetin Q5H I have slept rested most of this morning. I began to feel weak 2pm. I thought "this will be when the mino saturation is lowering" took Quercetin.. relief. >> then my head has cleared I am feeling better. No More Vertigo!!! the 25mg mino Daily is helping. I still have a raised red rash on my right shin and mild itching all over body. gut inflammation is less bothersome. I am excited about this turn for the better. |
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Aussie Barb Research Team
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Friday November 26th 5.40am ish is Day 2 of mino @ 25mg daily my special schedule used to control my herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 40mg Q4h day Q6h night: Quercetin will see.. Close to the mino due time I was needing it.. bloating etc rearing again. I slept well. I have woken feeling somewhat like a Human Being!!!!! 25mg mino Daily is a hit for me!!! I'm not so reliant on the Quercetin to drag me along now either.. Raised itchy rash on lower right shin and mild body itching persists. I am a little weak, but feel much better otherwise than I have for so long . |
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Aussie Barb Research Team
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Saturday November 27th 1.45pm ish is Day 3 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: changing out to Q5h to Q6H: 40mg Qh day Q6h night: Changes since mino 25mg daily: Body & brain feel *released* .. a relief. gut inflammation *there* but much relieved. stomach not tight distended as has been. not *as**sick* no vertigo!! sniffy sneezy runny nose now when getting close to Benicar due time able to extend Benicar dosing again from Q4H Heart / chest feels *heavy* R shin itchy lumps still present (have never been prone to *rashes before) sweet nitrous oxide body odor very present. tired sleeping very much. |
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Aussie Barb Research Team
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continued ... Saturday November 27th 7.35pm ish is Day 3 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 40mg Q4h day Q6h night: couldn't extend the Benicar without becoming sicker & depressed. vertigo when mino dose due. relieved by mino. |
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Aussie Barb Research Team
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Monday November 29th 9am ish is Day 5 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 40mg Q4h day Q6h night: mino 25mg daily: continuing. In MP, feeling Bad is Good... but feeling too bad is not too good.. I am feeling bad so that is good.. and I am needing to sleep rest a lot. after I am up for awhile I start to feel *sick*.. that is when I need to lie down again.. = ) I'm not miserable emotionally, so I can manage. best to all of us.. |
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Tami Member 
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Barb, Just read through your posts. Want to tell you it's so good to have so many of my oh so difficult to describe symtoms described perfectly by you. Thanks for the time you spend posting. Thanks for giving me words to describe what my body feels like. Best Wishes, Tami |
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Aussie Barb Research Team
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Tuesday November 30th 7.30am ish is Day 6 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." At first I was impatient to be *normal*, to be doing MP normally ... but I am happy now to *go with the flow* and to trust that my body is doing what it needs to do, and is taking me where I need to go.. Benicar: 40mg Q4h day & night: mino 25mg daily: continuing. awake thru the night every night now. last night had a strong decaf coffee to try to help the detoxing, (in lieu of the coffee enemas I have heard about and I did go to sleep.I have been constantly feeling soo *sick*. any action, even small, makes me feel sick. I can only stand to eat light foods. The diaphragmic across front ribs inflammation has been like a hotplate.. & bars of aching at neck, hips, knees, ankles thru the night. By keeping the Benicar at Q4H and resting resting I manage and have no depression. go over the 4hrs and I am miserable in every way. I think my bacteria killing and my body's ability to efficiently detox are not yet in sync. this too takes time.. eeep it is all happening, and I am managing, so all is well... |
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Aussie Barb Research Team
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continuing ...Tuesday November 30th Day 6 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." so many variables: we have darkened the full house even further. by placing a dark colored bed sheet over each lot of drapes. shrug. so that I can barely see, without NoIRs, without a light even during the day. a *different* day. didn't feel like other days of herx, but very weak in every way. flat out having strength to get around. still not eating *normally*... when I'm not able to *eat* it is a change. there has never been any time I have been like this. it doesn't worry me.. I'm able to eat *enough. |
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Aussie Barb Research Team
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Wednesday December 1st 1.45am ish is Day 7 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." change to Benicar: 40mg Q4h day: back to 20mg doses Q3H. I have been taking the Benicar @ 40mg dose x almost 3 weeks since the change of mino schedule. if I keep taking 40mg x Q4H I am going to need a sponsor. so I have gone back to 20mg doses to see how many hours I will get from that, to see if that strings it out any further. I am awake for my usual recent midnightish wakefullness. how am I? I feel somewhat rejuvenated (even) from where I have been, but not fully. I start thinking maybe I can extend the mino dosing? but I had better not be in a rush to add any more changes. My stomach is a bit so so.. and the gut inflammation is *quieter than it is normally but still well present. have had the aching hips when in bed. itchy bumps still on right shin. still sweet body odor of nitrous oxide. time to go back to bed.. =) |
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Aussie Barb Research Team
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Wednesday December 1st continued .. sick day again or still. so accordingly I must be doing Ok. I'm telling MySelf that all is well, that I am killing bugs .. I am managing.... greetings & best to all, Barb ... |
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Big John Member in Phase 2/3
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Hope you are feeling better soon! Last edited on Wed Dec 1st, 2004 03:12 by Big John |
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Aussie Barb Research Team
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Wednesday December 1st continued .. I went to the Dr.. which is less than 2 minutes from home. Hadn't been for approx 6 weeks. I wore my Black Cape up over my head and looking thru the neckhole. long dress and NoIRs. The receptionist asked my husband... does she have a migraine? and when he told her I was avoiding the light she gave me a darkened room and a bed(!) for the hour wait to see the Dr. so that went well. Thursday December 2nd 6.20am ish is Day 8 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H. Changing the Benicar back to 20mg doses has helped to take the pressure off. and I can easily go the 3 hrs. I am still sick. not able to eat much.. but that is ok.. I will not suffer there. sweet body odor still.. I am wanting to be able to extend the mino dosing but with symptoms as they are will wait yet. |
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Aussie Barb Research Team
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Friday December 3rd 10.30am ish is Day 9 of mino @ 25mg daily & extending as able schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H. Quercetin BD The new old Benicar dosing is the way for me to go. the itchy bumps on my shin are disappearing. The pressure is lifted off me. I am still weak, sick, but relieved. I have inadvertantly extended the mino dosing by 2 hrs yesterday ie to 26hrs, so will see how I go extending it by 2 hrs at a time. I am at the same time now as yesterday ie. 26 hrs, and am beginning to itch a little full body. so I will take the mino now. |
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Aussie Barb Research Team
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Saturday December 4th 7.30pm ish is Day 10 of mino @ 25mg daily & extending as able (today to 31 hrs) schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H & as wakes thru night. Quercetin BD I am sleeping better again. I automatically wake for Beni (no alarm) and straight back to sleep. Still sick this morning.. was it the quercetin? but fragility faded today. a phonecall is enough exertion to put me back again. so I take care of me. I was able to wash dishes tonight! I feel to have turned a corner this afternoon as far as not hanging onto the mino by a thread. I am extending the mino dosing a couple of hours each day and I have been able to extend it to 31 hrs today before I started to feel a difference.. this is a relief to have picked up a little. |
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Reenie inactive member
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DaveW Member
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Hi Barb, Congrats! Sounds like you've finally got your foot in the door, and making progress! For my first few weeks on the MP, I could take mino no more than once every five days. Now, I am beginning to be able to reduce the time between doses. Try to remember that once you start taking the mino regularly - progress is inevitable. And try to remember, that we are all in the gallery cheering for you. - DaveW |
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Aussie Barb Research Team
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Sunday December 5th 4.30pm ish is Day 11 of mino @ 25mg daily & extending as able (so far to 31 hrs) schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H & as wakes thru night. Quercetin BD thanks Guys.. I have had another rough day today... but yesterday afternoon's window was a good experience at least.. and as we know, feeling bad is good, and to be expected!! The good news of others before us keeps me going.. I have had chest heaviness and anxiety and general unwellness. but I rest / sleep and take care. thanks to all & best to us all, Barb |
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Aussie Barb Research Team
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Tuesday December 7th 11.15 am ish is Day 13 of mino @ 25mg daily changed back to daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H & as wakes thru night. Quercetin BD CHANGE: I have finally snapped out of the perpetual herx that I have been in all this time. caused by taking the small mino doses to start. The relief from living in that intensity is wonderful. BUT: now I can assess MySelf on another level and I am physically & emotionally weakened, fragile. this has been so for a couple of weeks, but I wasn't able to differentiate with the herx present.. thinking it had to do with the herx. I have tried all the meds combos and cannot be upheld. I spoke to Meg & Dr M. I have been holding off the NPS and the B12 while doing MP: history> which were both Rx for me along with thyroxine, and which all enabled me to come off 3 years max dose prozac in 2 months only 1 year ago. The NPS can now haul me back temporarily only and not fully.. I am settled to what I was, but of course am terribly sick and weak.. but at least not depressed / crying as I have been .. I rest sleep as much as I need to.. it helps to keep me from feeling the fragility.. PLAN: Having achieved the status of non herx! I am going to rest here in this for awhile before moving to extending the dosing.. that means Q24H mino dosing till I decide I can move on again.. I have asked for a home Dr visit to have my IM Methyl Cobalamin B12, which I had withheld for 3 months re the MP... and I have asked for a home visit to do my labs, as I am too weak to go out. all pending.. Thanks to all support received. xox warning: best not to start MP at small mino doses. At the time I was beginning MP I / we had seen the bad 'herxing' of some on 12.5mg and less, and because I knew MySelf to be med sensitive, chose to begin on a really small dose. What none of us realised at the time that those *herxes* were not herxes, they were from sun / light exposure. and we have found that beginning on small dose mino is not a good thing to do. |
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Aussie Barb Research Team
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continuing ... Tuesday December 7th 6.15 pm ish My dear Dr has been to visit and gave me my IM Vit B12. He asks, "what has happened?" that I do not look happy like I used to... that this treatment is "not doing you any good." I said I would not be swayed and that it will take time and we have agreed that I must continue to have the B12 and NPS. and he will come anytime I need him to.. I am hoping / feeling fairly sure that I am on the way up now... |
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Aussie Barb Research Team
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Wednesday December 8th begun 2 am ish is Day 14 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." change to Benicar: 20mg Q2H & as wakes thru night. Quercetin BD Well, I have woken @ 2 am and I think I have had a lightbulb moment. The IM B12 did take that edge off my suffering and gave me welcome relief. having had the Benicar at 1 am, I woke @ 2am feeling the *edge..... hmmmmm ...... alert! thinking that this is a new type of herx is a possibility. >> took another 20mg Benicar. relief. How will I know? I will take the Benicar 20 mg Q2h to hold me together, and keep the mino 25mg daily, no extending mino for now. and see how I go. This has been really tough. I could not have hung together without the wonderful support I have. Some Thoughts: I am so isolated by the consequence of staying in the dark and of my being so weak that I can hardly communicate with anyone except to the minimum with closest Family. this is valuable time out of my older Parents lives; where I am not able to visit or be present to them in the way I would like (mind you they have been fitter than I for many years now). My daughter has just had her 30th Birthday and I am too incapacitated to throw her a party or even go to her, or to go to any of my 5 adult Children. and there are so many things that are *out there* and even in here ....... (I couldn't do any of those things pre MP anyway... I can't read or watch much television.... I haven't been capable of *doing* Christmas for many years... but yes I am going thru worse as warned) BUT: this is a choice for me, that if I wait for all those things..... when will it ever be time for me? It is my choice to choose to do something about My Life.... to take this time with the at the moment, to me, incomprehensible goal; ........ or to be sentenced to a full Life of sickness. so yes I am thinking of Dr Marshall & Meg & Belinda & Betty & their friends who now have a surreal Life they can live... I cannot comprehend that I may ever truly have this too.... but I am compelled to keep trying for it.. My Dr thinks this is not working..... naturally they want to see someone *getting better* asap ..... I think it is working very well by the look of things..... ahhh sighh on we go with all my MP friends.. |
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Aussie Barb Research Team
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Wednesday December 8th continued.. some extra things to list. as I said, not a pretty sight... Sweet body odor is still much with me: well, Dr M said it could be NO from the BUN. Others describe their odor as burning plastic / rubber. @ Nitric Oxide? Once I'd have thought of it as ketosis. I don't know what it is. it could be like any of the above... how confused am I that I don't know I am to have a blood test for Rickettsia when the Lab gets it sorted.. maybe the critters are in ketosis???I have said before that Pre MP I used to sleep myself into a *state*. I am doing that again... waking up from a nap in a fragile state... Pre MP I took charcoal to hold me... now I am taking Benicar. My face and mouth are itchy > tending toward sneezy... At the base, basically I am far better today from the B12, but I can find myself to be only an inch away from no good... am hanging on thru the Benicar and mino ... which must mean it is still herx, just tuned to a new Channel.. sighhhhh .... I think I will be able to actually do something today, and I have my active sense of humor back.. that is always a help.. |
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Tami Member
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Dear Barb, You're so good to share what's going on when you're feeling like you do. Thanks for reminding me "feeling bad is good." And for your example of walking through it. Great knowing we're walking toward health, even when we're climbing the mountain. Take it Easy, Tami |
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Aussie Barb Research Team
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Thanks Tami, it feels a bit embarrassing to be having such a rough time... & to be working it all out in the public eye so to speak... but heyyy... this is real... this is Life ... it is messy sometimes ... and we all feel a bit better if we see someone else 'fess up... My thought process has further evolved after saying: so I have decided too to let my Parents and extended Family officially know that I will not be leaving the cave any time soon, so that they are (left unsaid: but as able bodied Citizens) they are officially invited to visit me / us anytime they wish. ...... all is out in the open and understood then.. Barb ... |
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Aussie Barb Research Team
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Thursday December 9th 7.35pm ish is Day 15 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q2H to 2 ½ & as wakes thru night. Quercetin BD The IM B12 seems to have given me a little more strength and my sense of humor back, but the herx is pushing me to the limits esp in the mornings with fragility and anxiety, very sick. I keep the Benicar @ 20mg x Q2h and cling to my bed to survive it and take the Quercetin BD < helps keep plumbing ok as well. I can just stretch the Benicar to 2 ½ hrs in the afternoons. other things of influence: this time last year I had salivary hormone tests done. Interestingly to me, my hormone levels when tested then, showed high levels of the agressive *hold me up / survival hormones*..... cortisol, estrogen, testosterone, & insulin, ..... and almost nil of progesterone..... I have noticed that since MP that these hormones have lowered. the lowering process would surely be having it's effect too, just as surely as if I was weaning them, & could be influencing this rough time. and I can manage without NPS, particularly with the B12 & while I can control everything with Benicar and Mino dosings. My body has a history of strength, Self Preservation....... ie. I had my tonsils out as a child... and they grew again.... are fully there. My body is working hard and I'm taking the best care I can.. it is tough going yet. I keep thinking that I'll be pleased to be looking back in the distance at this time one day. is that a glimmer of Hope I perceive? The support and encouragement from Others keeps me going. thank you xox |
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Aussie Barb Research Team
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Friday December 10th 10.35am ish is Day 16 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." change > Benicar: 20mg Q3H & as wakes thru night. Today I feel to have come to a clearing in the Jungle!! this is a better place to be. I may be able to see what is happening a little more clearly..Today I have been able to manage and to feel human again with the Benicar @ 20mg Q3H by having the NPS for the anxiety attack. One day at a time. as I rewrite HerStory... Barb ... |
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Aussie Barb Research Team
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continuing .... Friday December 10th 5.15pm ish Day 16 Since beginning MP I have really tried to do without my Rx B12 and for the last month or so, my NPS... thinking that it may be best if I did so. Mystory> which were both Rx for me along with thyroxine, and which all enabled me to come off 3 years max dose prozac in 2 months only 1 year ago. With the perpetual herxing I have been terribly sick and have recently become very weak & fragile.. I spoke to Meg & Dr M. Meg says >> " I think there is a difference between what you were taking and routine massive vitamin supplementation that we caution people about. The other thing that just occurred to me was that, in the beginning, when so many people were having trouble and we were trying to figure out why, we zeroed in on all those supplements and ignored the fact that these folks were out and about in the sun. I believe that replacing hormones that your body needs but no longer can produce is a good idea. . This is a very personal decision for women these days. If we encourage testing first and use of bio-identical products, I think that HRT is not contraindicated with the MP. " Thru last night when the fragility struck, I have restarted taking my NPS, and followed on today when I have experienced the weakness approaching. This has enabled me to be more stable on the Benicar 20mg Q3h. and the daily 25mg mino. It was too tough for me the other way, so I will see how I go now.. Today I was actually able to participate on the Board and make myself a pot of chicken & vegetable soup - which I have been unable to do for ages. Thanks & Best to All... |
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Aussie Barb Research Team
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To All, the best I can do with sending the soup is  << click here ... Barb ... |
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Aussie Barb Research Team
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Saturday December 11th 3.30pm ish is Day 17 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H & 40mg night. no Q last 2 days. Last night I had a *window* of clear head!!! I was able to tidy and sort my computer desk (for the last few years when I am *well enough* to *sort* that is cause for celebration!) I slept well, woke for Benicar and had crazy dreams about being exposed to light!!! that would be a nightmare, right? Last night I was planning what I was going to do today, with my clear head..... but.... alas, today I am tired, resting, but otherwise fine.. am spending some time smelling the roses before I make any more changes.. whew!! |
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Aussie Barb Research Team
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Monday December 13th 3.30pm ish is Day 19 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H & 40mg night. Gut: bloated, pressure, feels weak, which extends to whole of me.> depressed. resting. continuing.... with eyes open looking for an opportunity to extend mino, but none yet. when the mino is due the symptoms step up to unbearable and put paid to that idea. |
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Foundation Staff . 
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Barb, Put it in the context of the length of your illness and the severity of your symptoms. It's gonna take time and patience but I know you have it in spades! Hang in there, Meg |
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Aussie Barb Research Team
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Tuesday December 14th 6am ish is Day 20 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H & 40mg night. I have noticed that my fingernails grow more slowly but stronger. and that the excess skin usually on my heels, that can lead to cracking, is non existent now on MP. Am Still *sick.. fatigued, weak. still body odor. the bloating IBS etc has been worse again the last couple of days and there is no outer reason for it. no light exp or change of diet. can feel the *ice pepper* in my throat when I exhale. other continuing noticable herxing symptoms that I haven't thought to mention are *wet ear.. inside and sometimes behind.. sticky eyes.. skin sticky oily, < I use exfoliating gloves in the shower.. a big effort when so weak. there is a lot of *work *happening.... |
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CelticLadee inactive member 
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Hey Barb, Interesting.... I have also noted my fingernails are stronger, my body odor is bad, my face is more oily, my ears get wet inside, the heels on my feet aren't so calloused so aren't cracking & I have sticky eyes at times. Pretty strange combination! Only a MPer huh? Well, I am washing my face and armpits twice a day and taking a bath every other day in Epsom salts which helps. I asked my hubby to buy me some Tom's of Maine deodorant in Rose and Jasmine cause my Now Nature's deodorant stick... salt type stick... was not doing the job anymore. LOL. I felt like Pepie Le Pew! (the French cartoon skunk) Eeewww!   Hoping you continue to gain ground in our quest to be free from stinky oily producing CWD bugs!  Keep up the good work HRH. xoxo CelticLadee ette |
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Aussie Barb Research Team
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Thanks Meg... the depression has lifted. I don't feel so disheartened today.. I can see how much IS Happening & why I am so sick.. Thanks HRM QCL. it is good to acknowledge what we can see of what is happening Thanks to All... Barb ... |
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Aussie Barb Research Team
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Wednesday December 15th 5.15am ish is Day 21 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." Benicar: 20mg Q3H & 40mg night. Yesterday afternoon I had a window of relief for a few hours. I was still weak but less intensity.. but then *it came back with a vengeance. >> as Intense Inflammation upper Right quadrant of abdo. once I was able to go to sleep, slept well, woke somewhat depressive, Benicar dose helps tidy that up when mild. tinea itch feeling on top of toes.. and still gut inflammation. > sick, weak, tired. resting. |
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Reenie inactive member
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Hey CL and Barb, Well, at least I'm not the only Pepi around here... Upper right quadrant of abdomen? That would be your liver, my pet.  Take care... xoxo |
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Aussie Barb Research Team
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Thursday December 16th 6.45am ish is Day 22 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H." (is 5 weeks of more freq dosing so far) 18 weeks of Benicar from Aug 12th: 20mg Q3H & 40mg night. Mino overview: Sept 10th to Oct 3rd: from initial dose of 1.5mg up to 12.5 mg & stop due to broken / no NoIRs: the mino stint being @ Aussie Barb Page: 1 2 3 then continuing on Benicar only with continuous intolerable herxing. Recommence Mino Nov 7th from initial dose of 3mg to 4mg Q48H, to 4mg Q12H... to 12.5mg Q12H (2 weeks) to 25mg Daily Nov 24th till 15th Dec. (ie. another 3 weeks ie *some weeks* as per Dr M above) New ABx (@ 1/8) commenced 16th Dec: to 1/4 on 17th Dec & cont. inexplicably I have had less depression again the last couple of days. For the last couple of afternoons ie around 22hrs after mino dose I have had a window of relief for 2 hours. I was still weak but less all herx intensity.. less skin sticky oily, less inflammation, less sick, more clear /able to think/do. what a relief!! my first real experience of regular waning / no herx... When the mino is due or overdue >>>> then it begins to kick up again.. .. goes to unbearable.. and it has been taking me hours to get it bearable again..if at all before bed. so I am still taking the mino Q24H.. and last night I stayed fairly reasonable!! no kick up, no real suffering. as you can see, I am amazed at the change.. and this morning is all symptoms milder, but all still present. |
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Aussie Barb Research Team
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continuing ... Thursday December 16th 6pm ish Dr. Marshall has suggested an additional antibiotic to see if I can get past the continuous Herx. New abx to be taken Q48H as long as herx allows.. along with mino 25mg daily as yet. Today has been another day of some intense inflammation and milder skin symptoms, and some mild depression... having to take the Benicar 20mg before the 3 hrs was up each time.. Thursday December 16th: Tonight I have taken my first dose (1/8) of the additional antibiotic.. along with the 25mg mino. |
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Aussie Barb Research Team
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Friday December 17th 5.30am ish is Day 2 of abx combo mino @ 25mg daily + 2nd ABx Q48H schedule being used in my case to gain control of herx. <overview here Benicar 20mg toward Q3H yest & 40mg night. Yest afternoon just before ABx due time... I was starting to go downhill again.. took both abx.. started to lift.. could definitely feel the difference of the 2nd abx.. I became very tired, woozy and went into total body muscle stiffness. went to bed and slept soundly. |
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jolbell69 Health Professional 
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Dear Barb, Keep going my friend - I`m sure the good times for both of us are ahead!! Always rooting for you........... Jo.xxx |
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Aussie Barb Research Team
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Saturday December 18th 6am ish is beginning Day 3 of abx combo mino @ 25mg daily & extending as able + 2nd ABx Q48H schedule being used in my case to gain control of herx. Day 24 of trying to extend the mino dose from 25mg daily out to Q48H <overview here Benicar 20mg Q3H yest & 40mg night. Mino dose: Friday night: With the support of the testing dose of 2nd ABx, taken Thursday night, Q24H came and went. I have been able to go without the mino right thru past the 24hrs ..... it is now 36 hours; and usually by 23hrs I would be starting to climb the wall needing to take it... I will go right to the 48hrs if it is no bother... that is another 12 hrs here.. and I am not looking like *needing it.. no IBS!! 2nd ABx: I have had some very bearable (actual waxing and waning!!!!!) herxing on the 2nd abx ...taken with the 25mg mino.... bone pain is new.. + my old friend/foe gut inflammation, skin oily sticky, and fatigue, depression, anxiety and brain fog.... so I will take the increased, intended continuing dose of 2nd ABx tonight. + the 25 mg mino still.. I am excited now.... |
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Aussie Barb Research Team
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continuing... Saturday December 18th...4pm ... 6pm will be dose 2 of 2 ABx combo .. today I don't feel *as* sick all over.... so I can feel *how sick* I really am.. symptoms today > gut inflammation and fatigue and brain fog....& an almost headache but not quite. skin oily sticky is v mild. no waxing waning apparent today. am quite able to wait for the ABx due in 2 hrs.. no pressing symptoms. |
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Aussie Barb Research Team
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Saturday December 18th 2nd dose of abx combo mino 25mg + (1/4) 2nd ABx} Q48H schedule being used in my case to gain control of herx. (successfully I would say) <overview here Benicar 20mg Q3H & 40mg night. ABx taken 6pm > within half an hour I began to feel very woozy, tired, and went to bed. slept well. Sunday December 19th... 6.50pm symptoms today > hard but bearable gut inflammation, heavy pelvic area. high fatigue > sleeping resting. transient wooziness. transient hot spot ribs. transient mild bone pain. transient anxiety. skin more settled today. must be getting them. |
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Aussie Barb Research Team
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Monday December 19th 4pm 3rd dose of abx combo mino 25mg + 2nd ABx} Q48H due tonight in 2 hours time <overview here Benicar 20mg Q3H & 40mg night. Last night I went to bed with the herx inflammation buzzing, and the high degree of wooziness.. slept soundly.. The Lab came to my home this a.m. to collect my blood. good not having to go out. Questions were asked re the light avoidance etc.. an opportunity to put some new thinking into the *real world Today I've been physically very weak... I'm usually weak on MP but today has been very pronounced, and the dominant symptom. so along with that comes transient emotional fragility. resting sleeping in between.. looking forward to *the dose*.. |
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Aussie Barb Research Team
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Wednesday December 22nd 6.30am abx combo QOD due tonight> 4th dose of mino 25mg + 2nd ABx} Q48H <overview here Benicar 20mg Q3H & 40mg night. Sleeping well. herxing is waxing and waning. It is a relief to have herxing and a relief when it has passed. herx symptoms: gut inflammation> makes me feel so sick slight transient antbite cramps under left arm and heart area, bones of arms. skin symptoms have settled to very mild. transient hotspots in left & right rib muscles. transient anxiety. body odor is back this morning (?BUN following tough herx last night? - more dead'ns) mostly weak and quiet, but fine ok. |
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Aussie Barb Research Team
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adding : I am really tired, on my bed most of the time. thankfully I have good support care help. my skin and under tissue is sore to rub or scratch. I never usually have the desire to drink much.. but I am drinking a lot of water lately. am I better on the 2nd abx? yes, it is better.. I have a break from the constant intensity.. and I feel like I am on the *real MP now |
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Aussie Barb Research Team
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continuing ...... Wednesday December 22nd 4.30pm abx combo QOD due to take soon > 4th dose of mino 25mg + 2nd ABx} Q48H <overview here Today has been a better day. I have been off the bed more. I was able to write some Christmas cards with a stronger hand. Last night's herx must have been a good one cos I can only eat light foods again today. gut inflammation is *there* to a greater or lesser degree all the time. |
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Aussie Barb Research Team
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Thursday December 23rd 8.30am 4th dose of mino 25mg + 2nd ABx} Q48H abx combo QOD last night: none today.> <overview here Benicar 20mg Q3H & 40mg night. Milder gut inflammation herx last night. will see if anymore herx shows between now and next dose. Even though I'm not *well*, - since having the continuous herx finally relieved, I am feeling better than I have for months. I am excited about the noticable change / lift. |
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Aussie Barb Research Team
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tired sleeping a lot today. interesting symptom: the place where the hotspot sometimes is... left rib *muscle* has developed a tic.... it will involuntarily go *tic tic tic tic*... it actually moves, there's a break, .... and more... etc.. |
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Tobi Member 
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Barb, You have such a gift for describing these weird symptoms. Your descriptions help others not to feel so peculiar with our assortment of strange tics (no pun intended), lumps and bumps and strange sensations. I would never have thought to mention the "sweet B.O." if you had not, but, after first thinking the fabric of my two new T shirts smelled odd, I realized it was ME. Sweet is the word - almost like cheap talcum powder. This has started only after the first two to three months on the MP. I'm taking it to be a Good Thing. Is this a common experience? Hope you get some rest over the long weekend - my guess though is you'll be taking care of everyone, just as you do here. Tobi |
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Aussie Barb Research Team
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Dear Tobi thank you odor : cheap talcum powder is right on!! thumbs up I find the odor is more when doing the harder herxing. so it must be the pretty dead'n's .... That tic tic tic symptom: is like a baby kicking or a butterfly flapping !!!! in the rib *muscle* .... it is amazing!!!! I am sooo intrigued by this.. taking care: Tobi... the first person I take care of now is me but thanks for your kind thoughts.. I think we who have lived with this disease are all Heroes. as this is my thread it wont be off topic to share what I wrote last night as I pondered the past: .... and contemplate what a brighter future may actually mean to me, to us ...?????? Christmas / Heroes / Life: Thoughts of *coming out*- of telling the Truth: I have been thinking about Christmas.. and what it means to most people and what it doesnt mean to us. it usually means shopping and preparing and celebrating.. all far too much for me to manage ever. without giving a thought to any other aspect. grocery shopping has always been my limit. we say in our Family that we have Christmas every day. because we eat well and love each other and take care of each other every day.. and that is what is so important and is such a Blessing. I was wondering just how many years it is since we have really *done* Christmas.. I was thinking about how I have been sick unwell, and that most people / family had no idea, as I couldnt *come out* as I struggled to make sense of it for MySelf. thinking of how it has been so terribly exhausting to send cards, and how I have done so because it was the one time of the year to make the effort to *give* this small token to those I / we cared for. so while we were flat out to get off the bed to have the obligatory ham sandwich for Christmas lunch .... my family and friends were not aware of my dilemma. I couldnt invite family or friends because I was too ill to cope... and yet I agonised over not being able to carry it out. over not being able to invite my family... over not being able to *be* who / where I wanted to be, because I was so ill. so when did this sickness really begin? I have been terribly sick and fairly well bedridden thru all of my pregnancies right from the start. and didnt recover between one pregnancy and the next. and then never ever recovered at the end. In amongst all this I have raised a family and worked in our Community .... and I have put up with people who did know I was ill, telling me that it was due to my *wrong thinking*, and another one is / was that I need *their religion in my life to heal me... we have travelled thousands of kilometres and shed many tears, spent thousands and thousands of $$$$ trying to help me find Health. the financial mental and physical and emotional anguish and cost is incalculable. when I really think about how unwell I have been and when did it start?? it has been all my life... but I sure have put on a brave front... so nobody would know... not even me .... ~~~~~~~~~~~~~~~~~~~~~~~~~ Here's to Our hoped for Brighter Future!!! To All of Us! Thanks for being such good travelling Companions.. |
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Aussie Barb Research Team
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Friday December 24th 9 am have had 4th dose of mino 25mg + 2nd ABx} Q48H abx combo QOD : 5th dose due tonight.> <overview here Benicar 20mg Q3H & 40mg night. + extra for hard herx. well! ahem... the milder symptoms and feeling improved did not last long... I am still getting plenty of kick at this dose yet by the feel of it.. symptoms: tired.. butterfly flapping in rib muscle. some Heart pressure transient. gut inflammation flared. so much that I had to take extra Benicar to cope.. I notice that as I need more Benicar (the 1,25D will be rising from herx) the anxiety swings in.. but the Benicar relieves that too then.. this morning as I write: no herx.. what's a herx? there is plenty of killing happening.. it is exciting to me to think that after a Lifetime of sickness and no known help.... that I am ON MY WAY!!!!!! |
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Tobi Member
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Barb, The strain of pretending to be a normal, coping person is huge. As you say, enduring the "advice" of people who really mean well, but haven't a clue, is an exercise in patience. Not being able to do with joy and enthusiasm lovely things for family and friends is a shocking loss - it is sad when one feels only relief that you don't have to attend that wedding, that dinner, because you can't, and you'll be able to be alone and rest. Let alone the fear that you are suffering from some terrible undiagnosed disease and you may just deteriorate on and on. And how you rob your husband and children of a well and energetic wife/mother. And how you feel guilty that they worry about you so much.And how you can't go places together. How it feel like being in jail, although the door is not locked. I've read somewhere a post by Trevor where he describes how it feels to be getting more and more well and how joyful that experience is. Hopefully we'll all be there soon. Tobi |
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Aussie Barb Research Team
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Saturday is Christmas Day 7 am have had 5th dose of mino 25mg + 2nd ABx} Q48H abx combo QOD last night: none tonight.> <overview here Benicar 20mg Q3H & 40mg night. I seem to have turned a corner... onto a different set of symptoms.... I couldn't lie down & rest yesterday. Yesterday afternoon pre ABx dose > I went into (no reason) emotional fragility and *frog in throat* / moist cough, feeling *sick.. <with me that is from the gut inflammation. slept well. woke very emotionally fragile + the above symptoms + Heart aura & various transient bone pains. distraction by computer (or sleep?) seems to be the best treatment for the fragility at the moment. it will be a quiet day. I am alone and am fine with that. |
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Reenie inactive member
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Aussie Barb says, "it will be a quiet day. I am alone and am fine with that." MERRY CHRISTMAS! |
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Aussie Barb Research Team
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awwww... yess indeedy.. I am never alone!! thank you (((Reenie and All)))) .. HavaHappyHolidays!! xoxox ~~~~ |
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Aussie Barb Research Team
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<< from this topic Intruding bad thoughts here.. this probably belongs here in my progress report as much as anywhere... I wrote: I have just remembered: that at times I have experienced intrusive self deprecating, incriminatory of (supposed) guilt / wrongdoing, anxious agonising depressive thoughts..... from toxicity? both pre MP and MP. pre MP I used charcoal tabs to absorb the toxins and that worked well.. but now it is too difficult to fit the charcoal inbetween the MP meds so that it is not absorbing them. One thing I find most Important is to recognise it for what it is when it comes along ...... that the thinking is not *real. to KNOW that it is *sick. that these thoughts are simply Not True.. it took me some time to get into the practice of recognising that I was being conned, & to remember what to do when it does present. faster recognition of both comes with practice.. for me I feel that it comes from my gut and not from my head.. if anyone can work that out.. and then to either remember to eat, helps. & I need to and do take my Benicar 20mg x Q3h all the time. and have adequate rest. overdoing may exacerbate symptoms. Trying to *combat* the thoughts has always been too exhausting for me, more than I could manage.. but I have found it interesting that they could be immediately resolved by taking Charcoal tablets which absorb toxins. It is difficult for me to remember anymore at the moment .. it may actually happen from the high 1,25D from either light exposure or herxing, so by keeping on top of all that must help.. I do know of others who have this experience; and I share this in the hope that You may find some help in it, and comfort that you are not alone. |
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Aussie Barb Research Team
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continuing ... Saturday Christmas Day 4pm have had 5th dose of mino 25mg + 2nd ABx} Q48H abx combo QOD last night: none tonight The Bat Cave or Bear Cave was the exact right place for me today. << the emotional fragility is ok as long as I don't talk to anyone. I have herxed most of the day: slept / rested on bed in the dark with cooling air con on all day. cramping around Heart and down left arm. sick from gut inflammation. starting to feel a bit clearer now. |
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OzJen Member 
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Hi Barb! I am not sure if I am happier about finding the MP or about finding that there are so many people with my exact same problems out there - and my exact same reactions. I can't tell you what a relief it has been to me the last 2 years to be alone on Christmas Day. No having to pretend I don't feel like throwing up or some such antisocial thing. No more having to act normal, when absolutely nothing about my life is normal any more. No more having to take along my own water, food and supps and feeling like Linus with his blanket lol! I keep going when the going gets tough by reminding myself that we never really know what great thing might just be around the corner. That is no small feat for someone who has found so many foul things around those corners. Still, the attitude of mind is so important. Ignore those ridiculous thoughts. I found out a long time ago that depression and so forth are part of the illness, so when my mind is acting up, I treat it the same as if my leg or stomach or whatever are acting up. Another symptom that will be ancient history one day, and usually eases in a day or 2 to where it is bearable. I can tell that you are doing something similar. Better than antidepressants and all those side effects I reckon. I just dont' listen to myself. If you get my meaning. Come on (Aussie) Barb, come on, come on!!! YOU ARE DOING IT, YOU CLEVER, BRAVE PERSON YOU. PS I am in favour of telling everyone about my illness and letting them do with it what they will. |
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Aussie Barb Research Team
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Thanks Jen. News Flash: MP brings me / us *out*..... 3 years ago, My Children having now grown, I made the move away from the Community where we had always lived. I needed to be in a type of cave away from all obligation & not wanting the phonecalls or visits, I had passed my contact details to few. Recently through doing MP I MySelf have been coming to terms with what the Truth is, I am finally being able to give the heave ho to those taunts of *wrong thinking* etc that we have endured for soo long... finally being able to acknowledge still yet slowly for MySelf, that I AM in reality > sick, that we have indeed been / are very very very ill, and that only our great strength and endurance has kept us surviving. The understanding of MP has shown me that I have no need to be embarrassed that I am unwell. Thru MP I am taking care of me in a very positive active way, and I will be doing it as long as I need to, thank you very much. This Month I wrote my *coming out* letter & sent it out. >>>> "Dear Family & Friends As You all know I have been very unwell for a very long time. This has meant that we have not been able to visit or to go to weddings, parties, reunions, get togethers, etc, or to even email or write to you or call you as we would like to. We haven't *done* Christmas for many years. I am undertaking a treatment which will take some time to complete, and in the meantime, I feel worse. It involves my avoiding light, and taking medications. I am hoping to find good health. I am conscious of Time and Lives slipping away. We have lived here for over 3 years. We invite You to visit us at our home @ ............... etc etc... " <<<<<< On a similar note, I received this letter from a CFSer friend also on MP >> "In part I feel sweet sorrow that I might make it out of this illness alive and well while others, I've met too many, including one who I loved so much, have taken their life because of the incessant pain of whats only shallowly been thought of as a terminal mental illness which is now looking like essentially an infectious problem that has always been waiting there to solve. We've been sick for so long and know things that folks that have always had their basic health can barely comprehend. But I think its time for this miracle to happen and we show ourselves as well as the those already healthy folk the celebration life is meant to be. " << I have been unwell so long that I have no comprehension of what good health may even mean for me. I have learned to live my Life one moment at a time, doing what I need to do in this moment. Thank You Dr Marshall that we are finding Our dignity along with our Health. |
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Tobi Member
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Barb, These types of message are every bit as important as the practical info given on this board. Bless you for being so open and generous with yourself and saying it like it is. It's a lonely road, that's for sure. It's a sad day when one moves away from "friends" because their presence and expectations are unbearable. This may sound horrible, but I have wished for all those who have offered unsolicited advice, made hurtful comments, etc., to be able to feel these symptoms for just a half hour. Just so I could hear them say, NOW I know how you feel. Tobi |
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Aussie Barb Research Team
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Sunday: is Boxing Day 6.30pm have had 6th dose of abx combo QOD tonight mino 25mg + increase to 1/2 of 2nd ABx} Q48H : <overview here Benicar 20mg Q3H & 40mg night. It has been a day of *hanging on*> mild anxiety, resting, small *butterfly flap* symptom in rib muscle. some mild Heart & bone cramping. all mild so increased the abx. |
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Aussie Barb Research Team
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Monday December 27th 5.30am had 6th dose of abx combo QOD last night mino 25mg + 2nd ABx} Q48H : <overview here Benicar 20mg Q3H & 40mg night. 4h Slept well. took Benicar thru the night to make sure I was ok with the increased abx dose. Woke with mild anxiety in the chest area, which moved to the gut area. resting (as usual). seems to be settling now. so far no other herx symptoms. Body is working hard. I can't eat much when like this. all very interesting. |
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Aussie Barb Research Team
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Mino overview: Sept 10th to Oct 3rd: from initial dose of 1.5mg up to 12.5 mg (3 weeks) the mino stint being @ Aussie Barb Page: 1 2 3 & stop due to broken / no NoIRs: and continuing on Benicar only with continuous intolerable herxing. Recommence Mino Nov 7th from 3mg to 4mg Q48H, to 4mg Q12H... to 12.5mg Q12H to delay intolerable herx (2 weeks) Nov 24th - 15th Dec. to 25mg Daily to delay intolerable herx (3 weeks) Dec 16th : New ABx (@ 1/8) commenced + 25mg Mino QOD > herx controlled! Dec 17th : incr New Abx to 1/4 + mino 25mg QOD cont.... Dec 26th : incr New Abx to 1/2 + mino 25mg QOD |
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Aussie Barb Research Team
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Monday continuing .... I am surprised. No real herx yet today.. butterfly is flapping gently in rib muscle and knee ! I am resting. anxiety is gone.. I seem to get a *hunger / *need for more abx when the dose is due and when I need to increase it.. the hunger shows itself in my *going downhill* / to unbearable... and needing the / more meds to uphold me physically emotionally mentally .. it is not the same as the herxing... it resolves with the dosing .. interesting .... >> re Dosing: when I am on *enough / adequate dose abx, I can keep the anxiety/ body dysfunction etc at bay by taking the Benicar on time or sooner. when I *need to increase the abx dose, no amount or frequency of the Benicar will uphold me. |
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Aussie Barb Research Team
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Tuesday December 28th 5.30am had 6th dose of abx combo QOD last. 7th due tonight mino 25mg + 2nd ABx} Q48H : <overview here Benicar 20mg Q3H & 40mg night. 4h rib muscles almost constantly jumping rattling VISIBLY moving. 22hrs after abx: achey sore diaphragm area ...???? >> sore muscles from constant movement (above)!!!!! 24hrs and on> Right side abdo and around to back all herx. and then gut inflammation in a different way. all keeps me steady and slow. feet esp right one have been a little puffy the last few days.. I rest and take care and drink water. Body is working hard. I am happy about this. the gut inflammation is a constant and flares up in herxing. wakeful & then slept well. and all is well.. |
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Aussie Barb Research Team
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Wednesday December 29th 4.30am had 2nd dose of mino 25mg + 1/2 2nd ABx} Q48H combo QOD last night <overview here Benicar 20mg Q3H & 40mg night. 4h visitors yesterday. as all symptoms are still bearable after 1 dose of the 2nd abx being increased, I wanted to increase the mino to 50mg last night, , but thought I had better give it a chance to see first. better not be rushing in..... rib muscles almost constantly jumping rattling VISIBLY moving. some herxing in gut inflammation last night. 1 bout of right rib cramping again. slept well. woke 3am with terrible cramp / knot in right calf leaving leg very sore at the moment. otherwise fine. |
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Reenie inactive member
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Barb, As for the ribs... I had a piercing needle-like pain that felt like it was underneath my right ribs; in or near my liver that woke me up yesterday morning. When I went to the chiropractor, we discussed it, after my adjustment. My rib heads were really out of alignment, as my upper back, (thoracic vertabrae) moved ALOT during the adjustment. When I mentioned the rib pain to her, asking about it being liver or ?, she said it was definitely due to the muscles/spine needing adjustment. I had a similar situation several days ago, in my neck. My traps were rock hard and caused head and neck pain. I'm SURE this is all due to herxing and the muscle involvement from it. I just thought I'd like to share that with you. |
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Aussie Barb Research Team
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continuing... Wednesday December 29th 2.30pm had 2nd dose of mino 25mg + 1/2 2nd ABx} Q48H combo QOD last night I have been very weak again today. dreadfully downhill body dysfunctional weak. could be due to the exertion of visitors? Beni makes no difference. Took Quercetin, & I came back to ok again. relief. no other herx symptoms.. not even any galloping rib muscles. |
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Aussie Barb Research Team
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Thursday December 30th 9am had 2nd dose of abx combo mino 25mg + 1/2 2nd ABx} Q48H last : planning 1st dose of 50mg mino + 1/2 2nd ABx combo tonight <overview here Benicar 20mg Q3H & 40mg night. 5h Tooth sensitive suddenly yesterday after being asymptomatic for ages.. (this tooth / teeth had been fractured and a bother pre & early MP) Gut area has been *aching* for the last few days. << was relieved by the Quercetin taken for the weakness. can only bear to eat light foods. body is working hard. good. slept well. resting. drinking water. all is well. |
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Aussie Barb Research Team
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Thursday December 30th had 1st dose of 50mg mino + 1/2 2nd ABx combo <overview here Saturday January 1st 2005 !! HAPPY NEW YEAR to us (((All))) 2nd dose of 50mg mino + 1/2 2nd ABx combo due tonight. Benicar 20mg Q3H & 40mg night <6h (sometimes I have to take the Benicar a bit sooner than this for anxiety or inflammation herx. Quercetin as an occasional extra option. I take the quercetin when the Benicar doesnt help enough with anxiety, or sometimes it will keep the plumbing going. I have had moderate herxing. mainly gut. not pleasant, feeling quite *sick at the time, but bearable. I could bear it up a notch yet I think, but I am giving each dose a 2nd *go, just in case I missed something. teeth transient to no symptoms. I rest well. sleep well. drink water. all is well as long as I go real steady. I had a go of my grandson's yo yo and got worn out doing that little bit!!!! |
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Aussie Barb Research Team
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very very tired... sleeping... |
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Aussie Barb Research Team
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Monday January 3rd 5am 3rd dose of 50mg mino + 1/2 2nd ABx combo due tonight. <overview here Benicar 20mg Q3H & 40mg night <6h I am so tired and sleeping, no other symptoms to report. This isn't easy, but it is bearable..... and I don't have a better plan... |
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Aussie Barb Research Team
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continuing .. Monday January 3rd 7pm 3rd dose of 50mg mino + 1/2 2nd ABx combo taken tonight. <overview here I brightened up this afternoon, came out of the sleepiness.. I was thinking I would need to delay the abx dose, but No, I am better than I was, & am *well *enough to go another round |
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Aussie Barb Research Team
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Tuesday January 4th 1.20pm 3rd dose of 50mg mino + 1/2 2nd ABx combo taken last night. <overview here Benicar 20mg Q3H & 40mg night <6h where has all the herx gone? have some transient slight sneezy sniffle.. all quiet. |
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Tami Member
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"Galloping rib muscles." Barb, thanks again for describing a symptom of mine so well... Thanks, it helps, not only in putting it into words for me, but to know someone else experiences it. Tami |
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Aussie Barb Research Team
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Tami, it seems so improbable to be experiencing such a thing OneSelf! another person has this too?? !! thanks for letting me know.. Barb .... |
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Aussie Barb Research Team
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Wednesday January 5th 5.30am 4th dose of 50mg mino + 1/2 2nd ABx combo due night. <overview here Benicar 20mg Q3H & 40mg night <6h. occasional Q required to keep all running smoothly. Slept well. Depending on how I am today I will decide whether I am increasing abx or not tonight. |
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Aussie Barb Research Team
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Have I improved? overview.. physically... not yet any better energy wise, or in ability to *do*... My husband prepares the meals, does the shopping, makes the phonecalls .. and he works. ...... I am flat out to do my personal care... but the function of some important nerves and muscles are improving (from previous dysfunction).. skin improvements noted. emotionally I am stable. > anxiety as part of herxing sometimes.. >> in which case, if necessary I increase my Benicar to 20mg Q2H then and add the quercetin only when necessary.... Q may not be for everyone, especially until you do get your Inflammation blockade established, and have no light exposure.. mentally: yes improvement there. I have improved mental stamina. but still a long way from, and have no knowledge yet of what full capacity may even be as I have been ill for so long. I can still feel the incapacity there yet. reading: havent been able to and still cannot read a paper or magazine or book for years. cannot read anything on internet that is too deep or that doesnt have enough *white space*.... writing: cannot write much with a pen and paper anymore... internet > can do short bursts. I used to write a LOT. Spirit: I realise that I am stronger in my Spirit than I have ever been that I remember. I am not well enough to work; I am actually too weak to *go out* at all as yet. I have been very ill a long long time.. so my reports would probably not reflect as quick progress as others may expect to make IMO.. I am doing better now at last. |
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GeorgeinRollaMO Member in Phase 3 
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Barb, Good to read that you are still fighting those buggers!! I cannot imagine what it must be like to be so sick for so long. Thanks for all of the work that you have put into this project. Wishing you and yours a very good New Year! Dark Vader |
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Aussie Barb Research Team
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Wednesday January 5th 7.20pm 4th dose of 50mg mino + 1/2 2nd ABx combo taken tonight. <overview here Benicar 20mg Q3H & 40mg night <6h. no Q necessary today Fairly *good day. I do feel a little better than I have done. I have had a *sore ear the last couple of days. is getting better. I forget to report that my hands go to sleep quite often at night.. and my legs sometimes when I am at the computer. gut inflammation remains.. have had no *real herxing today, but I am able to be patient and stay at the same dose as a precaution tonight ! |
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Aussie Barb Research Team
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Thursday January 6th 5.10am 4th dose of 50mg mino + 1/2 2nd ABx combo taken last night. <overview here Benicar 20mg Q3H & 40mg night <6h. gut herxing mild enough. some very mild very transient bone pain. slept well. Further re assessing where I am reading: havent been able to and still cannot read a paper or magazine or book for years. cannot read anything on internet that is too deep or that doesnt have enough *white space*.... writing: cannot write much with a pen and paper anymore... internet > can do short bursts. I used to write a LOT. Spirit: I realise that I am stronger in my Spirit than I have ever been that I remember. this should be a good gauge to look at later.. thanks Mr Raba for asking. |
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Aussie Barb Research Team
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continuing.... Thursday January 6th ...... 4th dose of 50mg mino + 1/2 2nd ABx combo taken last night. clearing throat. touch of anxiety relieved by extra Benicar. tired. herx today is different: a different kind of *sick. sick in the stomach as opposed to *sick from the gut inflammation. Improvement: nerve & muscle function restored: for years I have had a symptom of paralytic IBS. > which included pressure in my bottom involving the nerves and muscles. the pressure, but not always the paralysed motility of the bowel was relieved by taking prozac.. and then after coming off P, by the Natural Progesterone... and the B12 injections. Now, I have function restored most of the time.. sometimes I have to take the Quercetin... I have to relearn that pressure is a good sign, not a bad one. It now means function CAN happen and to Know I can *go and get some good relief.. what a blessing this is.. after many years of much discomfort. |
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OzJen Member
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Barb, how much of the improvement in the IBS do you put down to the MP and how much to the other things? I ask because I have a similar problem which seriously frightens me at times. I have given up trying all the different hormonal therapies one doctor had me on because my symptoms were too varied to accurately assess the effects, and I learned that the hormones fluctuate so much that tests mean little. Progesterone didn't seem to have any effect on my gut, but I controlled symptoms with supplements not allowed on the MP. Now my problems are back . |
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Aussie Barb Research Team
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Jen All of the improvement is due to the MP. I could only *manage it poorly before. Now in this last fortnight, it has moved to > IS functioning! along with other pelvic nerves muscles that were dysfunctional before. best, Barb ... |
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Aussie Barb Research Team
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I found this post that I wrote way back in July when I was taking it all in... learning about the MP.. Why I choose to do MP for those are asking.. I have no regrets for a moment. |
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Aussie Barb Research Team
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Dear Jen when I read your post and think about it, I am astonished at how much we have put up with and how we *manage it all... I didnt realise how much till I have this relief, and also your post.. Dr M says we dont know what good health is till we experience it.. and I can see that is so true. Other people, my own family, have no idea what I have been living with every day for years ... it is hardly the subject for polite conversation, ie if One is capable of even that!! My daughter yesterday asked how long are you going to be doing *this* (MP) staying in the dark etcc? saying it is another one in the long list of things I have tried.. well I said as a matter of fact I am experiencing some healing of usually unmentionable problems. oh well that is alright then.. |
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Aussie Barb Research Team
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Friday January 7th 11am 5th dose of 50mg mino + 1/2 2nd ABx combo due tonight. <overview here: this abx combo commenced Dec 16: is 3 weeks Benicar 20mg Q3H & 40mg night <6h. yesterday I had to keep the Benicar 20mg Q2H all day > with good effect to quell anxiety herxing. am back to Q3H today.. but I think I will stay at same abx dose because of it.. maybe I am learning not to push MySelf so hard.. still occasional sessions of clearing throat. gut inflammation still present/ milder. sick stomach is bearable. small time of skin itch mild. seborrhea scalp face hands mild/mod. very mild bone pain. some mild chest pressure. very mild *antbite cramping now. tired. less appetite. I am actually feeling *improved... but.... I am still not well enough to even *want to go anywhere.. am exhausted after showering. It is nice to even feel a little bit like I am / may be (?) on the Road to Somewhere.. It is 3 weeks now on the new abx combo: and it has been good for me. Thank You Dr M. |
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Tobi Member
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Barb, I sense your "almost-optimism" - like if you say you feel better it may go away - I feel like that too - still very sick and not able to do anything, but some little signs here and there that health is returning. For me I discovered "wrinkles" on my feet today, which means no swelling - haven't seen that for years. As you say, so many things have been tried before with the initial hope and then the let-down, that it's reasonable for our children and friends not to get too excited about the MP - just mum doing another one of her "things". Let's show them all! Good luck Tobi |
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Aussie Barb Research Team
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Saturday January 8th 5.30am 5th dose of 50mg mino + 1/2 2nd ABx combo taken last night. <overview here: this abx combo commenced Dec 16: is 3 weeks Benicar 20mg Q3H & 40mg night <6h. Some small part of the weight of illness is *lifting off me. I am still very tired and weak and yet there is a difference. am not ready to start walking yet. Last night was the first time I was able to go an hour past the ABx due time with no ill effect. all interesting. slept well. the upper respiratory cough cough and clearing throat must be the *next *thing now.. is bearable. gut inflammation still there. more improvement in bowel function noted. no need for Q. skin herxing. looks like it is all *happening... |
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Aussie Barb Research Team
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This UR thing is like a wheeze sitting at the back of my throat. yes I have had these chokey sorts of problems along the way.. so here goes.... cough cough ... aaahhhhhhemmmmmmm ...... |
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OzJen Member
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We can tell how you are by the humour in your posts! Go Aussie Barb!! |
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Aussie Barb Research Team
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Sunday January 9th 5.15am 6th dose of 50mg mino + 1/2 2nd ABx combo due tonight. <overview here: this abx combo commenced Dec 16: is 3+ weeks Benicar 20mg Q2 or 3H & 40mg night <6h. well! this ABx combo is working just fine.. there will still be no need to increase it tonight. herx symptoms are *enough / bearable. unpleasant enough / but I am appreciative of having them. To keep all managable / tolerable.. when any of the symptoms becomes *too *much... I take the Benicar 20mg sooner with relief.. I feel sicker in the stomach at some times than others.. I imagined masses of dead critters were the cause.. so is yuk but good. some bottom pressure. coughing clearing throat. skin. wet inside ears. gut inflammation. anxiety. very mild *antbite cramp in rib muscles under arms. less appetite. tired. weak yet. |
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Aussie Barb Research Team
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Monday January 10th 5am 6th dose of 50mg mino + 1/2 2nd ABx combo taken last night <overview here: this abx combo commenced Dec 16: Benicar 20mg Q2 or 3H & 40mg night <6h. My body is working very hard. both feet puffy, so drinking more. I am tired and tending to anxiety easily. using the benicar for best management. I let the abx go half an hour + over time again last night and suddenly felt sick and dizzy.. was fine once I had it. I am going steady and that is enough for me. MP is amazing. All sorts of herxes, gentle, managable, proving I do have, am fighting, and killing an infection. It is an adventure in itself.. all done without my leaving the cave! |
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Aussie Barb Research Team
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continuing ... Monday January 10th 4pm 6th dose of 50mg mino + 1/2 2nd ABx combo taken last night <overview here: this abx combo commenced Dec 16: I am just making a note here: my symptoms are indicative to me that I need to increase the next abx dose: persistent tiredness and more bottom pressure.. Tuesday Night abx plan: 1st dose 3/4 new abx + same 50mg mino combo. |
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jolbell69 Health Professional
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Keep it going Barb - I`m with you all the way!! I wish you could start feeling much better soon - it`s a long rocky road we are travelling, but, remember - we are not alone!! Take care, Jo.xx |
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Aussie Barb Research Team
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Tuesday January 11th 5.45am tonight abx plan: 1st dose 3/4 new abx + same 50mg mino combo <overview here: this abx combo commenced Dec 16: Benicar 20mg Q2 or 3H & 40mg night <6h. Going on my symptoms the last couple of days, I think I should have increased sooner. I have been suffering IBS ie this time Irritable Brain Syndrome... it became intolerable last night, and I knew I needed more abx.. so I took mino 25 mg with relief, to get me thru till my increased dose tonight. still have sore inner ear. all else remains similar.. |
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Aussie Barb Research Team
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continuing .... Tuesday January 11th 6pm tonight took abx: 1st dose 3/4 new abx + same 50mg mino combo <overview here: this abx combo commenced Dec 16: brain had a better day.. very tired. nap, rest, relief, nap rest, relief.. strong *antbite cramp to rib muscles again this afternoon. It is good to know that our many and varied herx symptoms are signs of healing happening.. best to us all, Barb .... |
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Aussie Barb Research Team
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Wednesday January 12th 8.15am last night took abx: 1st dose 3/4 new abx + 50mg mino combo <overview here: this 2 abx combo commenced Dec 16: Benicar 20mg Q2 or 3H & 40mg night <6h. my sore ear is some improved this morning.. is it a sore ear? I am thinking it may be herx.. all intriguing.. how many types of "sick in the belly" are there... I'm having every one one of them as herx one at a time.. I can't bear the thought of food this morning. I am having ground floor renovations per kind favour of the MP.. nerves and muscles improved.. bowel 'paralysis' now is function... am looking forward to more good health.... this is an exciting adventure .... ie when I am not in the middle of a sick herx ... |
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Aussie Barb Research Team
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continuing.... Wednesday January 12th 9pm I should write this now while it is fresh.. I am not herxing now and all is fine and well... I have been herxing fairly well a lot of today..... and it has not been nice... apart from the sick belly which emanates to a whole of body sick feeling... I am going thru stages where I feel like I am losing it in my brain.. as I sit here now.. it is like it hasnt happened... but it is so difficult to get thru it at the time.. there is nowhere to get away from it.. knowing it is herx and that there is an end in sight, does help me to hang on thru the misery.. aching in big toe and to a lesser extent other toes on left foot is a new one tonight.. inflammation in left ear settling.. |
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Aussie Barb Research Team
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Thursday January 13th 1.15pm tonight due abx: 2nd dose 3/4 new abx + 50mg mino combo <overview here: this 2 abx combo commenced Dec 16: Benicar 20mg Q2 or 3H & 40mg night <6h. Q prn Another Brain herx this morning: I wrote> "I am not well.. I feel *fainthearted*/anxious/ ?what/..... not *normal* cant do anything.. feel *scared* to go have a cuppa !!.. can hardly move for it.. I am nearly paralysed mentally.. am sleeping to stay away from it.. handling it all quietly... and staying on the bed... whew ..." <<< Dr M says>> I finally took a Quercetin, and am coming out of it.. I may have been coming out of it anyway as it lasted a few hours yesterday and then later was as if nothing had happened. At least I know it goes away after eliminating bacteria, and therefore healing. |
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Aussie Barb Research Team
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Friday January 14th 9am ABx not taken last night ABx tonight due abx: 2nd dose 3/4 new abx + 50mg mino combo <overview here: this 2 abx combo commenced Dec 16: Benicar 20mg Q2 or 3H & 40mg night <6h. Q prn I skipped the abx last night to see how I'd go.. no usual illeffects. had some wind type pain.. but it resolved .. I'm having a reprieve from the hard herx. I'm very tired, brainfog, weak, fragilish. resting sleeping. |
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Aussie Barb Research Team
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continuing.... Friday January 14th 4pm Today is the *third day* - very weak fragile morning.. starting to come out of it a bit this afternoon. I plan to take the abx tonight. this is the first time I have ever been able to tolerate going over the *normal* abx due time. I feel today has served me well.. giving my body some time. I knew before I began MP.. when I read the info, that I had a lot of inflammation, and that I had to go thru worse to get better. and that others have done it before me.. Because of the severity of and length of time I have been ill, I can manage to do MP, one moment at a time only because of the protection of Benicar and the Self management of dosing. and because of great support I have. |
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Aussie Barb Research Team
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Saturday January 15th 5.45am Took 2nd dose 3/4 new abx + 50mg mino Q72H combo last night <overview here: this 2 abx combo commenced Dec 16: Benicar 20mg Q3H & 40mg night <6h. Q prn < about once per day slept well. woke with pelvic pain this time.. relieved it's not the brain. but ouch.. |
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Aussie Barb Research Team
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Further notes about the Brain herx: To All: there are a couple of things I found: it didnt last forever.... a few hours at a time.... and then it was gone like it was never there.. (it only seems like forever while it is happening) I take my varied schedule of Benicar to help me thru it > 20mg Benicar Q2 or 3H / day and 40mg night (for 5 or 6 hrs no longer) and the Q if necessary.. and if no relief... and is intolerable I took an extra mino 25mg @ 24H to get me thru till next abx due.. good support needed... if you are finding it tough.... write to the Board and ask for help.. |
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Aussie Barb Research Team
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Sunday January 16th 8am Due 3rd dose 3/4 new abx + 50mg mino combo tonight <overview here: this 2 abx combo commenced Dec 16: Benicar 20mg Q3H & 40mg night <6h. Q prn < about once per day Yesterdays pelvic pain was gone in no time. a quiet day herx wise. family coming and going. slept well. woke anxious: Have taken Benicar and Q; eaten; distracting myself. taken Benicar again. As can easily be seen, for most, MP is not a quick fix... it does require a commitment to the process. I have been ill so long that I cannot comprehend what good Health or *a future* might even mean. The people / stories in MP Success Stories keep me inspired... I am determined in My Spirit, and I know there is no better answer to how better could I be spending my time... I *manage MP, my Life... one moment at a time. |
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Aussie Barb Research Team
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Monday January 17th 6.45am Due 3rd dose 3/4 new abx + 50mg mino combo last night <overview here: this 2 abx combo commenced Dec 16: Benicar 20mg Q2H day & 40mg night <5-6h. Q BID yest feeling *sick.. gut inflammation. anxiety, depression. thoughts of hopelessness. > wanting to disassociate from how I feel. as in *these are NOT the days of my life*.... knowing what the facts really are. hanging in moment by moment. Benicar as above + Quercetin TID is helping some. slept well, but anxiety depression is present on waking. I skipped the abx dose @ Q48H again as this continued. & will assess. |
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Aussie Barb Research Team
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Monday January 17th 8pm Took 3rd dose 3/4 new abx + 50mg mino combo tonight > Q72H <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q2H day & 40mg night <5h. Quercetin BID to relieve anxiety herx. It has been a couple of miserable days again, with the anxiety and depression herxing.. teeth on left side, upper & lower: TERRIBLY sensitive to AnyThing today. I am out of the woods again this afternoon. my head has cleared.. so I have taken the ABx combo; again @ Q72H ... |
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Martha Health Professional
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Barb, I'm confused-are you already up to 3/4 of a pill of the phase II med after begining in December? Also, do you take the mino and the new med every other day or every day? Thanks, Martha |
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Aussie Barb Research Team
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Dear Martha Thank you for your interest.. For you and for others who have missed the pre history of this.... Here is my story :I have been taking my abx QOD; but the last couple of times I have had to go to Q72H because of extended herxing. I am on a different abx regime.. if you go back in my reports, you will see that I have had a lot of difficulty because of the severity and length of time of illness. I began MP > Light and D avoidant July. Benicar August 12. Mino in Sept. In Oct my NoIRs broke so I discontinued mino till I had replacements.... and I continued herxing... In Nov I recommenced mino. I was at 25mg mino daily for intolerable herxing for a long time and unable to progress until I began the new abx as advised by Dr Marshall, which is not Z, on Dec 16.. and was immediately able to go then to QOD and make progress in that I am herxing as expected.. I have now so far progressed to 50mg mino only + 3/4 of my new 2nd abx QOD if possible.. very best to all, Barb ... |
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Aussie Barb Research Team
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my D test results: Aug: 1,25D=51.5 Sept: 1,25D=34 & 25D=35 Dec: 25D=32.4 dropping very slowly. |
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Aussie Barb Research Team
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Wednesday January 19th 7am ABx combo is Q48H tonight <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q2 - 3H day & 40mg night <5h. Quercetin BID to relieve anxiety herx. Not as miserable day yesterday with taking the Benicar and Q as above according to need to (just) keep on top of the anxiety. resting ++, quiet. Teeth sensitivity still present. My body is puffy, slower to detox until further healing.... so am needing to remember to NOT push on too fast.. need to be patient. Because I am / have been so unwell, Benicar is the only reason I am able to do a treatment that will help me. |
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Aussie Barb Research Team
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Thursday January 20th 11.45am Took 4th dose 3/4 new abx + 50mg mino combo last night > Q48H <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q2 - 3H day & 40mg night <5h. Quercetin BID to relieve anxiety herx. didnt increase the ABx dose because of presence of anxiety, decided I need to remember to be patient. managing to keep the anxiety mostly controlled yesterday with taking the Benicar and Q as above according to need. resting ++, quiet. was able to watch a "little more television.. which was an improvement on usual. still cant read a book or magazine yet. Teeth sensitivity still present. slept well. woke this morning feeling quite *sick* so am obviously still killing bacteria at this dose. |
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Aussie Barb Research Team
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continuing... Thursday January 20th 8.45pm has been an easier day anxiety wise, still tired quiet.. sick herxy tonight again, but milder.. I realise that just as I cannot imagine what good health is.. I look at some people on the television and wonder at their ability to function like that!!! & similarly a lot of healthy people have no understanding of what *sick *is. I am in my darkened cave....... But I am far from isolated.. ... I am in touch with the World ... in a way that is managable for me... I have company on this Journey ! .... thank you for the Journey.. and thank you for the company... |
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Aussie Barb Research Team
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Friday January 21st 1.45pm have taken 4 doses 3/4 new abx + 50mg mino combo <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <5h. Quercetin BID The level of herxing has dropped.. relieved to have less anxiety ..>>have been able to have Benicar at Q3h today.. but still *sick from the gut inflammation and herx. I am amazed at this same level of dosing x 4 doses still giving this herx. I say it is only mild and not dramatic... but I dont know anyone else who wants to be this sick either.. I am *pleased about it because it means bug kill! when the abx dose is coming toward the Q48H (as it is now), the *antbite cramping under left arm, down the arm and into the breast are vicious. is not long since Beni, have just taken a Q to see if it helps.. |
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Aussie Barb Research Team
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continuing ... Friday January 21st 9pm took 5th dose 3/4 new abx + 50mg mino combo tonight @ Q48H <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <5h. Quercetin BID Liver herxing tonight.. |
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Aussie Barb Research Team
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Saturday January 22nd 10.30am under right arm and down the side rib muscles is *sore ish like smaller *antbite cramp than usual.... seems to be building.. usually just hits. (was left side yesterday) what is a liver herx? I have been asked.. is a similar experience to > what is gut inflammation and gut herx? I feel fullness / swollen feeling? / discomfort / sick / not shriek pain but great discomfort ... and when it is really herxing it is all of that + like a hive of bees humming sort of.. when I call it gut >>> it is predominantly across diaphragm and down.. when I have called it liver it is predominantly liver area and all down the right side... knowing that it is a sign of bug killing, I can easily bear it. Depressive all day today instead of anxiety. |
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CelticLadee inactive member
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Thanks Barb for explaining what a liver herx feels like for you. It isn't something I've experienced and was very curious about it. Good to know. May your herxes be bearable resulting in better health for your tomorrows. xoxox CelticLadee a fellow bug killer! |
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Aussie Barb Research Team
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Sunday January 23rd 8.30pm last was 5th dose 3/4 new abx + 50mg mino combo Friday night. is Q48H tonight but still herxing enough to wait an extra day <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <5h. Quercetin BID is nec. Herxing symptoms: more persistent really painful *antbite cramping under both arms. relieved only by hot wheat bag. touching the area is painful. sick stomach and gut inflammation. very steady. left ear inflammation still flaring. hands going numb often when resting sleeping. |
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Aussie Barb Research Team
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Monday January 24th 8.10pm took 6th dose 3/4 new abx + 50mg mino combo tonight @ Q72H tonight <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <5h. Quercetin BID is nec. I've felt really sick in the stomach today. am very slow and steady to walk around still. feeling very quiet. resting.. some very mild phantomish (hardly noticable) *pain in fingers and toes. aching in back tonight. no anxiety or depression today. |
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Aussie Barb Research Team
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Tuesday January 25th 9.25pm took 6th dose 3/4 new abx + 50mg mino combo @ Q72H last night <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <5h. Quercetin BID is nec. Sick in the stomach ... is it called liverish? is very debilitating... keeps me quiet. & a cough... choky, choking on nothing except the cough itself. less appetite. Despite how awfully sick I feel so much of the time, (from bug killing I am presuming) I think that my baseline *energy is improving. in the circumstances, energy seems too strong a word... but that is it.. I think I will be able to increase abx next dose. |
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Aussie Barb Research Team
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Wednesday January 26th AUSTRALIA DAY 11.25am I have coughed and coughed and choked till I was totally sick thru the night. I think that I should have increased my abx last dose, as I do suffer exacerbated symptoms from the need of it. so the abx dose is due tonight and will be increased. I may need to take it sooner. I thought to and could have taken an extra dose of 25mg mino last night to get me thru better, but I didnt do so and it went on thru the night to morning.. ahhh well.. |
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Aussie Barb Research Team
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continuing .... Wednesday January 26th 8pm took 1st dose 75mg mino + 3/4 new abx / combo @ Q48H tonight <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <5h. Quercetin BID is nec. not a good day. on the verge of a cough all day. increased the abx tonight because I felt the need to (see previous post). tired. much the same physically. mentally emotionally fine. |
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Aussie Barb Research Team
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Thursday January 27th 5.30pm took 1st dose 75mg mino + 3/4 new abx / combo @ Q48H last night <overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q2H day & 40mg night <5h. quiet today as my body continues to work hard. starting to feel sick again tonight (from bacteria dieoff I expect) coughing settled.. |
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Aussie Barb Research Team
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Friday January 28th 9.15pm is Q48H since ABx > took no abx Taking Benicar 20mg Q2H day & 40mg night <5h. quiet today as my body continues to work hard. sick with transient gut herx > was strong thru the night. slight depression around. can feel slight herxy pressure in chest sometimes and in arms or toes. all tolerable. coughing when Benicar due... ear mostly settled. |
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Aussie Barb Research Team
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Saturday January 29th 12MD Taking Benicar 20mg Q3H day & 40mg night <6h. cough ?gone. herxy right flank this morning. sickish belly. I am more introvert lately as part of the herx.. going with the flow. |
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Aussie Barb Research Team
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continuing .... Saturday January 29th 11.30pm <abx overview here: this 2 abx combo commenced Dec 16: took (drop to> 50mg mino + (same> 3/4 new abx / combo @ Q72H tonight Taking Benicar 20mg Q3H day & 40mg night <6h. slept well. quiet day. Decided to drop mino dose from 75mg to 50mg to see what happens, if anything.. to see if it has any punch left in it. |
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Aussie Barb Research Team
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Sunday January 30th 4am <abx overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <5h. well! the drop of ABx gave a New punch alright! I wasnt expecting it. I havent been in bed long and wasnt able to sleep properly. then, bang > Herxing is strong right abdominal all down to groin. like a punch (but bearable).. had Benicar at 5H and had to get up.. spreading across diaphragm. reflux feeling in gullet. excess salivating. usual sick feeling. type of numb and pins and needles down left arm into hand thats a new one.. |
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FeatherRiver Member in Phase 2/3
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Just when you think it's safe to come out from the storm! Hang in there sweetie! I started that naggy cough - driving my hubby crazy at night. Also I experienced that crazy chest tic some time ago - I also described it as a baby moving - Steve gave me "that look". It is so nice to share these issues. Barb, I really think you should discuss with Reenie some diet and MP acceptable vitamins (like magnesium). It sounds like you are not eating well due to being so sick. Steve started being very anxious and depressed. He upped his magnesium and it has really helped. Not everyones answer or problem, but it helped him and it might help you. Also, your teeth issues are probably due to killing little buggers in your sinuses - good news, eh? Well it helps to think it is all for the good of it. God bless you sweetie - you are such a positive influence for so many - this good is coming back to you ten fold. Oh, you are having a hard time explaining the improving energy thing....I was explaining to Steve, I still feel fatigue, but I feel stronger, is that how you feel? Like I felt we could ski this year and I looked forward to it. Last year I could not even visualize getting READY, for it. It seemed too hard to even get the gear together let alone ski! But alas, we are waiting for next season, hoping we are able to be in the fun and sun. God bless. |
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FeatherRiver Member in Phase 2/3
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Question regarding your teeth problems, are you grinding or pressing your teeth hard? I have started doing that recently and I think that may be what has started my migraines. (I have them almost every day) I don't realize it until I make myself relax and I notice my shoulders are tense and my jaws are tense and my teeth are clenched! Just a thought. |
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Aussie Barb Research Team
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Feather, thank you for all.. The symptoms I have: re teeth (rarely so far) and gut and depression / anxiety are thankfully, transient herx, and as such are all managable with Benicar and abx meds dosing. omgoodness.... my very small something of improved *very basal energy are only a faint glimmer! and will not be taking me anywhere near skiing yet!! if I can have a shower without nearly expiring will be a good start.. all best, Barb .... |
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Aussie Barb Research Team
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Monday January 31st 7am <abx overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <6h. slept well. my gut is the one constant. most usually feeling *sick or herxing in some manner. the Benicar helps keep it *down to managable. I feel like I am living in a bubble, in limbo, ?suspended animation ... feel like "what is real?" ..... is not a problem. just perception. just part of *getting *there. Edit: is actually more than perception.. it is that I'm feeling too unwell to be as participatory in *real life* as I was.. I am at present in this bubble of not being well enough to do anything around here.. |
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Aussie Barb Research Team
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continuing ... Monday January 31st 12 MD ish very fragile today. resting. incapable. > I think this 2nd ABx must be a very good bug killer... it seems to be building kill. is Q48H tonight re abx.. whenever (may be Q72H) I take the next dose I will be reducing again.. back to 1/2 caps new ABx (from 3/4) + staying at the 50mg mino again. |
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Aussie Barb Research Team
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Tuesday February 1st 6.40am <abx overview here: this 2 abx combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <6h Today is my "3rd day"... will take abx at Q72H tonight. am having some respite from the herxing so far today. |
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Aussie Barb Research Team
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continuing ... Tuesday February 1st 7.40pm <abx overview here: this 2 abx combo commenced Dec 16: decreased back to 1/2 caps new ABx (from 3/4) + (staying at) 50mg mino again at Q72H tonight. to see what happens herxwise this time. Taking Benicar 20mg Q3H day & 40mg night <6h sick and tired and uninterested again all day, with some transient depression. It would be difficult if not impossible to keep going, if not for the belief / knowledge that it is the bacteria dying that is making Me so sick, and that others have trodden the path before me / us and have come out the other end with their Health.. |
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Aussie Barb Research Team
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Wednesday February 2nd 4.30pm <antibiotics overview here: this 2 antibiotics combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <6h decreased abx last night. to see what happens herxwise this time. sickness started to lift this afternoon.. up to chest first and some relief. is a relief. |
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Aussie Barb Research Team
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Thursday February 3rd 9.45am <antibiotics overview here: this 2 antibiotics combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <6h Decreasing the ABx has given me herx symptom relief. the sickness and tiredness and incapability are more tolerable than they were. The cough has surfaced again. these symptoms of tiredness sickness depression are somehow more sneaky subtle forms of herx, and I was adjusting to managing similarly to adjusting to the disease.. until it got too bad altogether. This has been a good way of proving to myself that the symptoms were herx from bacteria kill and not due to anything else.. I will take the same abx dose again tonight @ Q48H .. |
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Reenie inactive member
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Hi Barb, Great to see you. (since you added your pic!)I've been reading your posts and thinking you're finding the combo herx sneaks up on you, eh? I'm finding that too. It seems mainly to give me brain sxs so they're more subtle. I ramped rather quickly since the switch was so easy. Now the sxs have increased some, but I'm going to try to ride it out for another dose or two if I can. Take care |
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Aussie Barb Research Team
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continuing... Thursday February 3rd 6.35pm <antibiotics overview here: this 2 antibiotics combo commenced Dec 16: same decreased dose 1/2 caps new ABx + 50mg mino again at Q48H tonight. Taking Benicar 20mg Q3H day & 40mg night <6h cough gone again. sick / gut inflammation again this afternoon.. tired resting prn. this is enough without increasing the abx.. some things for me to watch for re improvement apart from the actual physical: I havent been able to read books magazines for years and still cant. I really love music but cant stand it for ages. cant bear the thought of watching a movie or comedies. no concentration to apply to these things. I'll be able to know when I have made progress in these areas.. |
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Aussie Barb Research Team
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Friday February 4th 8am <antibiotics overview here: this 2 antibiotics combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <6h slept really soundly: herxing on decreased dose abx: transient: oesophageal; burning reflux feeling. cough. salivating. diaphragm. some anxiety..... body is working hard: non pitting edema. appetite generally is less than half these days. |
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Aussie Barb Research Team
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continuing ... Friday February 4th 8.30pm <antibiotics overview here: this 2 antibiotics combo commenced Dec 16: Taking Benicar 20mg Q3H day & 40mg night <6h Q48H for ABx: next dose not taken: have forgotten to mention; have had a problem with swallowing a bubble of air with tablets.>>> still some esophageal, gut and chest herxing, some pain in toes, but also have Family visitors coming. tired. |
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Aussie Barb Research Team
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Saturday February 5th 6.30am last night: forgot to report that I was spacey and dizzy on feet . slept well. I have an almost headache this morning. first time for a long time. Having weekend visitors so took mino 25mg to tide me thru rather than no antibiotics. has picked me up a little so far. |
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Aussie Barb Research Team
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Sunday February 6th 6.30pm <antibiotics overview here: this 2 antibiotics combo commenced Dec 16: Have taken mino 25mg Q12H x 3 doses to get me thru the weekend.Taking Benicar 20mg Q2 to 3H day & 40mg night <6h... Q BID.... ABx same dose 1/2 caps new ABx + 50mg mino again tonight, going back to QOD. It has been a Big Weekend with many surprise visitors and & 7 extras staying overnight. I had to stay in my room some to avoid the inavoidable door openings and the too much socialising.. even so..... after all have gone I am a crashed wreck.. depressed. picking myself up..<< using the Natural Progesterone spray to do so..we went out to Dinner last night, and while we waited to be shown to a table, (MySelf in NoIRs of course, and having to sit), the only chair available was behind the counter (and the till !!)... I sat on it while we waited and not 1 member of staff blinked an eye or said a word. |
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Aussie Barb Research Team
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continuing Sunday 9pm.... all is well... |
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Aussie Barb Research Team
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Monday: quiet, tired. have bouts of esophageal burning, reflux, air stuck in esoph..ouch. Benicar 20mg Q3H worked ok. Q BID keeps me stable. reporting > Tuesday February 8th 4.30pm Benicar 20mg Q2H day & 40mg night <6h... Q BID.... have felt very sick, tired & emotionally fragile all day.. took Benicar Q2h all day.. am puffy, so body is working hard. hanging in. |
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Aussie Barb Research Team
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Tuesday 8th .. took ABx Q48H 50mg mino +1/2 new abx (9th dose at this level) Wednesday February 9th 3am Benicar 20mg 40mg night <4h... settled and stable after report (& Q dose), so took next abx dose. slept. woke 2am with herxing diaphragm and all right abdo. took Benicar and had to get up. is still herxing well. |
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Aussie Barb Research Team
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Thursday 10th Feb 7.40pm .. took ABx Q48H 50mg mino + (increase from 1/2) to 3/4 new antibiotic Benicar 20mg Q3H day & 40mg night <6h... Q BID herx symptoms have been: hands / arms go to sleep. occasional coughing to almost choke (need cough drops to stop). ears inflammed / wet (otitis externa) is it herx? is is not? it comes and goes so must nearly be herx. esophageal burning transient. trouble swallowing (small). gut herxing has become milder. antbite cramps of rib muscles occasionally. fatigue. feeling so sick. non pitting edema constant and has risen some... my body needs to get better enough to get better.. ie destroy more inflammation. appetite staying lower than pre Marshall Protocol. skin and breath feel like mild pepper. body is hot a lot. slight seborrhea (skin, eyes.. blink blink..) restless sleep last night. activity level still the same.. from bed to chair to table to chair to bed. Today has been milder symptoms /some relief. feeling a little brighter. emotionally fine > time to increase antibiotics. |
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Aussie Barb Research Team
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Friday 11th Feb 1.30am Herx woke me at MN : could feel every part of my body differently. all mild, yet dramatically different. hips legs ankles all drawing aching, feet icy. chest phantom tightness. head spacey. head, upper palate teeth very mild ache. arms hands lips numbness. ?pancreas hotspot. hungry. then coughing / choking. I was wondering how far this would go, and it all settled and was gone except for gut inflammation within an hour. |
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Aussie Barb Research Team
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Saturday 12th Feb 3am .. Benicar 20mg Q2 - 3H day & 40mg night <6h... Q BID Friday Herxy day: right abdominal and various bone and chest. drawing of legs. sick. mild anxiety. very mild numb upper teeth palate.. all very intriguing. brain must have cleared tonight some. HairDresser came to the house and did both our hair: to save me going out. |
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Aussie Barb Research Team
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Saturday 12th Feb 8.25pm .. tonight > took ABx Q48H 50mg mino + 3/4 new antibiotic Benicar 20mg Q-3H day & 40mg night <5h... Q BID Herx: wheezy feeling / coughing when Benicar due. some mild numbing of face, palate. head wide awake alert more than usual. body is still slow weak. rested at times. noticably less anxiety. settled today. ears settled some.... |
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Aussie Barb Research Team
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Sunday 13th Feb 9.30pm .. Benicar 20mg Q2H day & 40mg night <4h... Q BID physically slow and tired. Kept the cough controlled by Benicar @ Q2H all day. I have a type of anxiety? that visits in the afternoon when I know it is time to take the 2nd dose of Quercetin for the day... with relief. I am no more *active, but I don't need as much nap time as I did. so that is a slight improvement. everything is relative. |
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Aussie Barb Research Team
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Monday 14th Feb 6.15pm .. HAPPY ST VALENTINE'S DAY  thanks saj tonight > taking ABx Q48H 50mg mino + 3/4 new antibiotic Benicar 20mg Q3H day & 40mg night <6h... Q BID Herx: wheezy feeling / coughing ok @ Benicar 20mg on or close to Q3H today. better day today. ears .... this 2nd antibiotics is a sneaky one.. doesnt feel like a *real* herx a lot of the time, but the signs are there that the bacteria are being killed.. chest pressure occasionally, body still puffy, hard working. am still *sluggish .. |
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Aussie Barb Research Team
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Monday 14th Feb 9 am .. Benicar 20mg Q2H day & 40mg night <6h... Q BID main herx is lung inflammation. feelings of wheeze / tickle / short of breath / salivating >> cough managed by Benicar 20mg Q2H some esophageal burning and transient back and rib muscle cramping.. breathing mild pepper feel most of the time.. may be 1,25D???.. |
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Aussie Barb Research Team
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Wednesday 16th Feb 7.30 am .. Benicar 20mg Q2H day & 40mg night <6h... Q BID still same lung cough herx: still needing Beni same. all teeth are very sensitive, even to water!!! chest Heart touch occasionally.. gut inflammation / hotspots... still puffed up. copy >> main herx is lung inflammation. feelings of wheeze / tickle / short of breath / salivating >> cough managed by Benicar 20mg Q2H some esophageal burning and mild transient back and rib muscle cramping.. breathing mild pepper feel most of the time.. may be 1,25D???.. << slept well... |
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Aussie Barb Research Team
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Wednesday 16th Feb 6.20 pm .. no abx tonight @Q48H Benicar 20mg Q2H day Q BID am feeling quite ok, but that is with a nap and Benicar 20mg Q2H all day to keep the coughing etc controlled.. have been able to feel mild Heart area inflammation occasionally. sweet body odor of the big kill is back again.. I have to remember to heed my own advice and not take the antibiotics tonight when I have needed to be on Q2H Beni all day x 2 days. all is well.. |
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Aussie Barb Research Team
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Thursday 17th Feb 12MD .. Last night: took Beni 40mg 9pm, went to bed. woke 11pm with big herx right abdominal right down into hip.. took another 20mg Beni and then a milk thistle before eventual relief and a good sleep.. I find this herxing so exciting.. I feel like jumping with glee... of course I am lucky to not have pain.. it is like a big hum.. it could definitely become painful without management.. skin is herxing again.. more oily feel.. |
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Aussie Barb Research Team
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Friday 18th Feb 7.45am reporting: Thursday 17th Feb .. no antibiotics last night @ Q72H Benicar 20mg Q2H day 40mg night 6H< Q BID as I had to be on Benicar 20mg Q2H all day to easily manage the herx. I didnt take the abx Thurs night, even though I felt settled enough to do so. slept really well. Plan: Beni Q3H if possible today? and to take abx tonight. |
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Aussie Barb Research Team
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The question is asked How do I do what I do when I am not feeling well.. This is something I enjoy doing. it is a distraction from my discomfort and I do what I am comfortable doing whilever I am comfortable doing it.. and rest when I need to. Thanks for caring. |
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BARNEY Moderator 
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Barb, You do well what you do when you're not feeling well. THANKS. Barney |
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Aussie Barb Research Team
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Friday 18th Feb took ABx 50mg mino + 3/4 new antibiotic @ Q96H !! it took me the 4 days to get thru the herxing, altho it was all managable and tolerable on Benicar 20mg Q2H + the Q helps too. |
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Aussie Barb Research Team
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Saturday 19th Feb 12MD .. Benicar 20mg Q2H day & 40mg night <6h... Q BID forgot Q yesterday afternoon so last night wheezy goes to coughing / chokey.. took Beni and Q and cough drops and gained control. had a *memory* herx: it is like a reliving reexperiencing the memory of being at a place, that I was at 5 years ago, geographically / mentally / emotionally... it was very distressing. the Q helps relieve this too. I have had this before but didnt think to report it.. I take it as healing of the disease re the herxing psyche.. I am happy that I am improved now from that disastrous time.. needing Beni Q2H to keep the edge off the wheeze cough.. |
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Reenie inactive member
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That's an interesting description, "memory herx." I get vivid dreams and thoughts when I'm in that semi-concious state or half-awake, half-asleep. Oftentimes, they've been of past events/situations, that I feel I've been living again. This has only been happening in Phase 2 for me. Hmmm... (Reenie ponders) |
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Aussie Barb Research Team
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Sunday 20th Feb 7am .. Benicar 20mg Q2 or 3H day & 40mg night <6h... Q BID I had an *easier day yesterday re herx.. was wondering what was happening? last night the anxiety herx was starting to sneak in again. I also have very mild transient numbness in top palate sinus area. and very acute sense of smell for last couple of months... slept well.. woke 15 mins before each beni dose due. woke up feeling s i-i-i-i-ck, anxiety, wheezy, cough... Q helps settle all.. altho still feeling sick some.. |
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Aussie Barb Research Team
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Sunday.. no antibiotics at Q48H Monday 21st Feb 1.15pm Benicar 20mg Q2 or 3H day & 40mg night <6h... Q BID still memory herxing: skin herxes differently at diff times.. bumpy, or oily; latest is hands and feet feel like they have been in water for too long, altho they are perfectly dry. tight wheezy asthmatic cough and I have never had asthma (my brother has) tired and feeling sick.. otherwise ok.. plan: will take the antibiotics tonight Q72H. EDIT 8pm: took ABx 50mg mino + 3/4 new antibiotic @ Q72H |
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Grace Member in Phase 3
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Barb Q what quercetin are you using good to hear that the 'new' abx is working better for you. thanks Grace |
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Aussie Barb Research Team
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Grace, Thank You. I have used Nature's Life and Solaray imported from US see FAQ How often should I take Quercetin? for details. Barb ... |
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Reenie inactive member
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Grace, I use Jarrow's brand Quercetin from iherb.com and they say they ship internationally now. |
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Aussie Barb Research Team
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Tuesday 22nd Feb 6.15pm no antibiotics tonight: Benicar 20mg Q2 or 3H day & 40mg night <6h... Q BID Some of us on the 2nd abx are finding that the it seems to be a very quiet & very good bacteria killer; that although we do not feel other *real* dramatic herxing as much, we are feeling very tired No dramatic herxing seems a silly thing to say when I am reporting an almost constant wheezy cough etc.. and Benicar 20mg Q2H ..... but still, it is a quiet herxer somehow. You may have noticed in my reports that I often have to go to Q72H and sometimes more (Q96H) to get a *clear day*, before I take my next antibiotics dose because of the herx / malaise etc.. and I have also had to decrease my dose x 2 because it crept up on me.. The thing about herxing / being tired, depressed etc on MP, that I dont mind at all, as miserable as it can be, and that I am not fit to do anything extra, is that I know that it is because my body is working hard for me, doing what it is meant to do... killing the bacteria, working thru MP. At the moment it looks like an endless road. Health and Future are only words.. they don't mean a thing to me yet.. I live in this moment and do it as well as I can... which is not always pretty.. it isnt easy all the time, nor difficult all the time.. all I can say is I am doing it, and I am committed to doing it. |
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Aussie Barb Research Team
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Wednesday 23rd Feb Benicar 20mg Q2 or 3H day & 40mg night <6h... Q BID The Herxing in MP makes us feel worse and we are happy to feel worse, knowing that it means we are getting better.. How can we be sure of this? I had tried so many things over 24 years. and I had come to a point where I said I would not do another thing until I saw people who gained their Health from the treatment. There are enough people ahead of me who are walking around able to live their lives, for me to be inspired and encouraged. and while ever I am killing bacteria / herxing, I know that I am on the right track. I knew as soon as I read about MP that it meant that I would feel worse before I got better. and I knew that I had lots of inflammation to deal with. I could feel it, and knew how it was affecting my health. How long would it take? I think that I thought I would have experienced more improvement by now... But, I know now that it is not possible to go any faster because of the length of time I have been really sick. .. as I have done this, I have become aware just how much denial I was in, how I was struggling to *think* myself better, and to do it with supplements, that were never going to get me there.. Compared to the life I had pre MP this is not any worse quality, I am no longer struggling to push myself by *trying* to keep myself going. I just *go with the flow* now. I am happy. and I know it is *doing something*.. whereas, what was I able really to do for my Health before? wearing the glasses etc, being in the dark; I am more than happy to do and am not embarrassed to say or do whatever it takes. what improvements have I experienced? To the outsider improvements can sound small, but being able to live without the burden of even 1 less symptom is wonderful. while I am still herxing well it is more difficult to get the feel of improvements properly. Pelvic nerve and muscle function continues to improve. I am off my max dose prozac that I was flat out getting from 1 dose to the next without distress. friends tell me I sound more peaceful and stronger. The peacefulness is worth a lot. I can notice brain improvements occurring in various ways. mentally emotionally physically. I have a Strength in my Spirit never before in my memory. I can choose to do MP with the hope of good health, or I can choose not to... I figure that I might as well be spending my life doing something productive for MySelf.... I am committed to doing this for me. |
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jsandman001 Member in Phase 2 
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WOW........excellent report. I hope everyone reads this and hope you continue to have the grit to carry on and see your way to health. You deserve it. Thanks, James Sanders |
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Reenie inactive member
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Yes, Barb, ditto, excellent description. I can honestly say I can relate to feeling that way too. I don't mind feeling worse again, while herxing, since it's not any worse than pre-MP. I was one of those that felt much improvement on Benicar alone, so going on the abx has brought me back to where I was before that, most of the time. There are glimpses of improvement in between herxing, but I KNOW this time, even if it takes me longer to feel well, than I had planned, I'm not suffering in vain as in before the MP. Thanks for sharing, as you so graciously do. |
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OzJen Member
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Yes Barb, true Aussie pioneering spirit, inspirational!!! What we wouldn't give to have some objective measurement of progress, seeing as the symptoms give us so few clues. I have family constantly asking me how I feel and obviously needing to hear me say I am feeling better. How many less CWD do you have since you started - now that would probably be a mighty help, eh? As it is, even before the MP, we have to develop grit, determination, perseverance, dogged persistence and at times summon bravery we don't know we have. All these things will serve us well into the future, even after the MP. Won't life be a breeze when we are well? Jenny |
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BARNEY Moderator
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Barb, You sound like I was feeling. You are a 'treat' to me. I look so forward to what MP will mean to me in the end. It already means a lot. Hang in there, we will make it. Barney |
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Aussie Barb Research Team
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To be trying to deal with these previously unrecognised illnesses in the face of Society and relatives, and Drs who have not been able to offer us any *real help.... and now for us to find and be able to support each other and be supported here with unprecedented Hope is amazing. I thank you all.. Barb ... |
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CelticLadee inactive member
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WOW Barb! RIGHT ON! That is truly a beautiful and inspirational post! You have such a terrific outlook. Everyone else added their good thoughts too and I thoroughly enjoyed reading this positive thread. Thank you all for such an uplift! I totally agree.... we have all been frusterated and treated poorly because of our "untraditional" disease. Our friends and family would have treated us with so much more compassion if we had told them we have "cancer" or "heart disease". My various doctors before MP weren't a whole lot of help because they aren't trained properly to do so. So I tried different supplements, transfer factors, etc. out of desperation and some did make me feel a little bit better. But we had really NO HOPE of remission. Very sad picture eh? Then along came Dr. Trevor with his protocol and answers to so many of our questions PLUS hope that one day we too can join the Sarcies in remission. Something inside of me bloomed and it hasn't died.... HOPE! WE all have hope that one day we will conquer the CWD bacteria and control the D dysregulation and live a freer life! It is worth every single moment of herxing to know that we have this chance. The beauty of it... is it is safe ... it can be done according to your personal management to a large degree. I'm celebrating with you Aussie Barb! Why wouldn't we do the MP? What's the choice? I don't see any do you? I too am SO glad we have the opportunity to do the MP. I appreciate the doctors that have compassion on us and are willing to help us do it. I am thankful for this group of wonderful people at this board that give so much time, so much love and support. Bless you Barb for your loving generous spirit! I love your vision .... I see it too! We do have HOPE! Love ya much, xoxoxo CelticLadee |
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Aussie Barb Research Team
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Thank You All report for Wednesday 23rd Feb no herxing so took ABx 50mg mino + 3/4 new antibiotic @ Q48H Benicar 20mg Q2-3H day & 40mg night <6h... Q BID too tired to write Report. herx anxiety. ie not true anxiety. Thursday 24th Feb 8.15pm very tired day, *in a bubble* resting sleeping, herxing: cough, sick and all gut sick to touch. anxiety a/a. when I write *in a bubble* strikes me that that is what I reached when I had to decrease the abx last time.. will have to watch that.. What is my abx *schedule*? for the poor people who are trying to follow this crazy road.. I am a girl who goes by *feel* so I am not on a specific schedule. Well, the schedule is Q48H with a flex ... I feel what the herxing is up to and how much Beni I am having to take ?Q2H a lot of the time for managing this coughing. the herx is quiet but fairly constant some of the time.. and I choose each and every time.. so sometimes it is Q48H or Q72H or Q96H.. and sometimes it just gives me a day's break. When the herx is minimal for a good amt of time ? maybe for 1 or 2 doses I would be considering increase. I have had to decrease x 2 so am watchful. |
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Aussie Barb Research Team
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Friday 25th Feb 5.25pm no abx @ Q48H tonight Benicar 20mg Q2-3H day & 40mg night <6h... Q BID herxing: struggling, very tired day, managing by resting sleeping & meds, depressive anxiety, cough controlled by Benicar & Q, skin is herxing sticky oily, body odor has been strong herxy, puffiness still. |
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FeatherRiver Member in Phase 2/3
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Gosh I know that "bubble" feeling - I have to work and I feel so isolated - even tho I'm "in the world" I feel so apart from it cause I'm so sick - I'm going thru the motions but it takes me three hours to do a 30 min. job - and as sick as I am - I do not "look" sick - and I am not sick enough to stay home in bed, like with the flu. You are an inspiration for us and we appreciate your diaries - I am going thru a special little herxing eposode - Steve and I were laughing about it finally, after we figured it out and it stopped scaring me so bad, that everytime I seem to exp. some illness, he has patients walk in with the same issue soon after and he said he already had a patient that after noon and was able to get her immedate help, that he might have missed - so who knows what plans God uses us for. As I said, I think you have a great book when this is all over that will help millions! Then you will be able to travel the world and have tons of fun with your family! Love to you |
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Aussie Barb Research Team
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Saturday 26th Feb 8am Benicar 20mg Q2-3H day & 40mg night <6h... Q BID Slept well. and woke to a better me today.. aahhh... relief.. so it is all herx.. though when in that *state* of being, I worry what else can it be? but of course it is always herx. I am still tired but no misery. I notice that I am more light sensitive recently.. I am better with the over head light on.. the light behind me even gets in my eyes!! plan: take abx combo tonight. |
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Aussie Barb Research Team
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Sunday 27th Feb 5.40am Benicar 20mg Q3H day & 40mg night <6h... Q BID I was too tired last night to take the abx. slept till 2am and then up at pc. took ABx 50mg mino + 3/4 new antibiotic @ Q84H this morning. I do feel brighter this morning. the herxy cough is still with me. skin on palms of hands feel *funny. gut inflammation is ever present one way or another. |
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Aussie Barb Research Team
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continuing ... Sunday 27th Feb 10.30am Benicar 20mg Q2-3H day Usually I take my abx at night.. this time I had waited till I felt better and clearer, Q84H, this morning. within an hour of taking them, it was like *whack*.. dizziness, and allover herx feel.. sick, cough exacerbated etc.. It was so much more obvious than when I take the meds and go to bed.. and wake up day after day feeling hung over.. It is a help to have seen the dramatic difference.. |
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Aussie Barb Research Team
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Monday 28th Feb 12MD Benicar 20mg Q2H day Sunday: too much herx: sick, tired, but slept rested to escape it.. oker last night. Monday: this dose has snuck up to too much again so I will have to decrease next time.. In the meantime: this morning: this is intolerable. too sick. too miserable: Benicar 20mg @ Q2H and took Q. took mino 25mg to delay bacteria killing.. |
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Aussie Barb Research Team
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Tuesday March 1st 6am Benicar 20mg Q2-3H day & 40mg night <6h... Q BID Monday: the mino 25mg relieved the intolerable herx but still sick weak tired. rested and took care.. at bedtime, took a dose of milk thistle to help my gut inflammation / herx.. slept WELL. Tuesday: woke feeling better.. I wont take another mino 25mg unless I need to today.. and will plan to take a reduced dose of my combo abx tonight.. and will decide on a different way of increasing next time.. |
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Aussie Barb Research Team
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Tuesday March 1st 9pm Benicar 20mg Q2-3H day & 40mg night <6h... Q BID a better day: still tired, resting sleeping, herx cough relieved by Benicar. no anxiety / misery. Decided tonight to Not take scheduled abx: to have a rest. Took mino 25mg @ Q36H from last same dose. |
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Aussie Barb Research Team
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Wednesday March 2nd 5.20pm :on abx holiday: Day 3 on mino 25mg daily for now.. Benicar 20mg Q2-3H day & 40mg night <4h... Q BID very tired: sleeping resting today: thinking I need a while off the abx schedule yet.. so will continue on mino 25mg daily for now.. I had a few days on 25mg daily 4 weeks ago when we had visitors for the weekend; but it wasnt really a true holiday.. so will do this again and for longer, to have a better rest... |
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Aussie Barb Research Team
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Thursday March 3rd 5.20am on abx holiday: still strictly avoiding D & Light: Benicar 20mg Q2-3H day & 40mg night <5h... Q BID The herx weight is lifting from me some: it is a learning experience in itself. I still have some residual yet, but it is lifting. my appetite has returned and I am not constantly *sick*. and.... there is a sense of some brighter shinier under there.. I have chosen to stop to smell the roses for awhile for a few reasons. A couple of *good MP people who care* have suggested it to me for a long time.. and I haven't felt ready till now. I was wanting to forge ahead. Now I am ready: I wanted to experience what happens: for myself and for others .. I am aware that some of us just insist on pushing that herx flat out.. and I needed a break.. I can see that I have improved mentally.. I will tell more if more comes to light.. |
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Aussie Barb Research Team
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Thursday March 3rd 11.55pm Was on abx holiday 25mg mino daily x 4 days: strictly avoiding D & Light: Benicar 20mg Q2-3H day & 40mg night <5h... Q BID Herxing has continued but differently: I have found that my Immune System is turned on and wont stop, the same as before I comm the 2nd abx.. skin herxing: very tired, cough cough cough. very lot of sweet herxy body odor. improvements I have found: are Mental: a feeling of *I am the Queen of my Castle* ie not to say that I am all the way there nor even a good way there, but better than in Living Memory.. it is wonderful. Took the mino 25mg 6pm (short of the Q24H) cos coughing. and the Benicar 40mg @ 9pm.. went to bed.. 2 hours later: SOB, tight cough, herxing gullet, antbite cramps under arm. I had learnt Something! I knew what would stop it.. I took 1/4 capsule of the 2nd abx.. to go with the 25mg mino I had taken earlier.. so I am back at the starting dose again.. of mino 25mg + 1/4 caps 2nd abx....and the cough has settled since the 2nd abx dose.. so the holiday I am going on now, is going to be restart and go slower on the herx holiday.. |
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Aussie Barb Research Team
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Friday March 4th 8.25pm no abx tonight. Benicar 20mg Q2H day & 40mg night <5H... Q BID Has been a high herx day: Herxy cough, tight chest managed with Benicar 20mg Q2H all day.. felt more in control this afternoon although still there. skin herx.. always weak, slow physically.. gut inflammation is high. mentally emotionally fine.. nice change.. |
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Aussie Barb Research Team
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Saturday March 5th 4.25pm is Q48H no abx tonight, too herxy yet... Benicar 20mg Q2H day & 40mg night <4H... Q TID Herx: high herx in morning.. gut feels *punched* altho not painful, just *sick / hit, persistent herxy cough, chest tight. I am amazed at the intensity this can get up, as I havent had known lung symptoms or disease.. . had to keep Benicar 20mg @ Q2H all day. start coughing coming toward the 2 hours.. sneezing some. Have needed to increase the Q to quell the anxiety depressive miseries that begin to come upon me when it is *time* for more Q. have rested and napped.. Dr M says today, re the good news and the bad news: "In any case, the bad news is that you are likely to have herxing for 18-36 months as you work through the phase 3 antibiotics. The good news is that you have been through the worst of the herx by the end of the first 12 months." ..Trevor.. It is a long time and a big commitment.. I am very thankful for the full management plan that is MP.. |
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Aussie Barb Research Team
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Sunday March 6th 9am is Day 3 after abx dose of (mino 25mg + 1/4 new abx) Benicar 20mg Q2H day & 40mg night <4H... Q TID I am going to number the days re the abx so I can see better what is happening re the herx.. Mino 25mg daily was not holding me.. was still herxing. after 4th day of daily 25mg mino lung herx was becoming intolerable and had to add the 2nd abx to get to longer schedule. Day 1 after low dose 2abx a/a was very strong herxing all day. needing both Benicar 20mg Q2H and Q TID to keep chest / cough controlled. need for Benicar re gut herx / gullet burning wakes me.. have to get up for awhile after Beni to let it settle.. Day 2 strong herx controlled more easily with Benicar 20mg Q2H and Q TID anxiety herx returns, controlled by taking extra Q. thirsty: need for Benicar re gut herx / gullet burning wakes me.. have to get up for awhile after Beni to let it settle.. Day 3 is today: still needing both Benicar 20mg Q2H and Q TID to keep cough and anxiety controlled. thirsty: chest still tight.. gut is sick from herx / lighter today. so far. |
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Aussie Barb Research Team
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Sunday March 6th 5pm is Day 3 after abx dose (took same dose of combo mino 25mg + 1/4 new abx 5pm) Benicar 20mg Q2-3H day Q back to BD today... The herx had settled as the day wore on. was still needing meds as posted to maintain this.. then this afternoon .... clear!: best I have felt for a long time.. I wouldnt be able to *do *anything, but I feel brighter.. |
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Aussie Barb Research Team
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Monday March 7th 7.45pm is Day 1 after abx dose Benicar 20mg Q2-3H day Q BID... more comfortable herxing today: needing meds a/a to keep cough managed. rested napped. tired. feet etc puffy. having a shower exhausts me still. |
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Aussie Barb Research Team
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Tuesday March 8th 8.35pm is Day 2 after abx dose Benicar 20mg Q3H day Q BID... mildest herxing ever experienced today.. I was able to be *in it* objectively.. and try to think how capable I am minus the herxing... could I go out more? go to Family gatherings? the answer is yet "No, I am not well enough, not strong enough." I am staying in the cave because I am not well enough to go out of it.. The Beni 20mg @ Q3H was fine.. some in the chest, upper palate so mildly numb transient. gut, mild transient.. a very different day. interesting knowing that bacteria are being killed while the herxing is indeed mild. no anxiety miseries. I am experimenting with the dosing and timing so will not take abx tonight, to see how much herx on Day 3 as expressed by Dr M as maybe the higher herxing day on the 2nd abx? |
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kgg/mpg Member
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Barb, happy to read that you are having a mild herx day. You deserve it! Best, Karen |
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anne p inactive member 
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Congrats on the good day Barb. So encouraging for you. May you have many more Question: How does one know whether the herx on the 3rd day of the comb abx is part of the runaway herx or the decaying of abx herx? I find it confusing and hard to understand. Anne |
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Aussie Barb Research Team
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Anne, Thanks... re: Question: How does one know whether the herx on the 3rd day of the comb abx is part of the runaway herx or the decaying of abx herx? I find it confusing and hard to understand: A herx is a herx. :As the mino dose decays, the immune system can kick in, bacteria are killed > herx.. if the immune system kills a large load of bacteria causing the herx to become intolerable, taking another dose of abx will delay the bacteria killing to manage the herx. >> when you are on mino only, the more frequent mino ie not allowing the abx to decay will delay the bacteria killing. ie. until the body gets *used to* the mino alone. Adding this particular 2nd antibiotic to the mino has been shown to delay the herx in this situation.. and then herx returns as the antibiotics decay.. Barb ... |
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Aussie Barb Research Team
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Wednesday March 9th 7pm is Day 3 after abx dose (took same dose of combo mino 25mg + 1/4 new abx 4pm) Benicar 20mg Q2-3H day Q BID... another mild herx day. a little more cough and chest, but managable. very tired, slept a lot today and woke feeling sluggish. feet etc are puffy. body has herxy odor.. milk thistle (with lots of water) is helpful for this and for gut herx.. this less herxing has been like living a song.. I took the abx, and I feel a (very) little *spring* in me.. woohoo.. this is looking better.. gut inflammation flaring at time of reporting. all managable.. Thanks for notes to me.. all best, Barb ... |
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Aussie Barb Research Team
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Dr Marshall says : "It is really tough putting your head down and working through the first 12 months of the MP. I think that unless folks understand how dangerous these diseases can be, then there is going to be little hope of success in beating them." ..Trevor.. |
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Aussie Barb Research Team
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Thursday March 10th 6pm is Day 1 after abx dose # 3 at this level. Benicar 20mg Q2H day Q BID... Began herxing within a couple of hours after abx dose last night. slept well. Q2H Beni + Q to keep cough and chest managable. gut inflammation.. some depressive misery today. slept rested most of morning.. brightening this afternoon. herxy body odor. numb hands arms at times.. hips are painful to lie on at times.. |
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Aussie Barb Research Team
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Friday March 11th 8pm is Day 2 after abx dose # 3 at this level. Benicar 20mg Q2H or less day / Q6H night Q TID... occasional dizzy. is lifting at time of report. the herx is constant but managable: by taking Benicar 20mg sometimes even short of the Q2H + Q TID to keep me from getting chokey from the coughing. resting relaxing makes a difference to the degree of the constant coughing lung herxing / tickly wheezy tight feel although no actual wheeze... some transient numbness to palate and even slight sinus drainage once. occasional sneezing. itchy allergy like feeling re nose palate at times.. |
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Aussie Barb Research Team
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Saturday March 12th 12.30pm is Day 3 after abx dose # 3 at this level. abx due tonight. Benicar 20mg Q2H day / Q4H night Q TID... Yesterday it took me everything I had to keep the herxy cough controlled so that I wasnt chokey..and last night I had a bad time for a while thru the night. and today the Q2H Benicar 20mg is sufficient so far. I could feel the *hurt* in my lungs chest area. still slight dizzy transient. + some very mild transient waves of sinus and palate numbness. a very cute herx symptom.. it is like, *just letting you know I am here killing bugs." and some almost sinus drainage.. also have had some random sneezing and chills / shivers.. and the itchy nose & palate which are old symptoms, that I think of more as disease symptoms than herx.. but they will be the active immune system signs.. also a painful *antbite cramp under arm and into right breast.. a heat bag relieves this one.. all is managable. |
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Aussie Barb Research Team
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Saturday March 12th 6pm is Day 3 after abx dose # 3 at this level. (took same dose of combo mino 25mg + 1/4 new abx 6pm) is dose # 4 Benicar 20mg Q2H day / Q BID... sleeping a lot today. nose irritable runny. cough herx totally managed by Q2H benicar. can still feel mildly rawish lungs. all fine. |
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Aussie Barb Research Team
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Sunday March 13th 5pm is Day 1 after abx dose # 4 at this level. Benicar 20mg Q2H day / Q4H night Q BID... Tired day, resting, napping. low spirits today. cough choke lung herx controlled by B + Q as above. feet etc still puffy. gut inflammation constant. body is working hard..occasional milk thistle. was able to read the newspaper today. that is an improvement.. Family milestone Birthdays looming this year: there is still no way I am interested in, or can manage *going out* or travelling ... that would be a case of me dragging myself along, and I cannot .. the job I am on at the moment is MP. |
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Jill T inactive member 
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Barb, I'm so sorry to hear that you are having a down day. I hope you will have a little brightness in knowing that you are such a blessing to all of us! Your constant support and advice and warm hugs are so inspiring! Rest well, and know that we are thinking of you! xoxoxoxo Jill |
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Aussie Barb Research Team
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Monday March 14th 4.40am is Day 2 after abx dose # 4 at this level. Benicar 20mg Q2H day / Q6H night Q BID... Slept well. took Beni 20mg @ 3am which was 6H. cough choke cough lung herx and the sadness herx hit me at the same time... no reason, just herx... I realised that having gone 6H thru the night was too long without the Beni.. that the 20mg wasnt pulling me out of it, so I had another 20mg, and have been up and had a cuppa and my Q to go with the B... the tears and the cough are drying up.. well, there is no doubt that MP is doing it's job.. the herxing and the managing.. thanks to all.. xox |
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Aussie Barb Research Team
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Just sharing something I think some of us may have in common.. My Relatives are starting to want to know... "Are you getting better?" "Will you be able to go out soon?" etcc.. I guess it does seem a long time to others.. I have been very sick for a very very long time. For many years, putting on a good face, I dragged MySelf to Family get togethers, - whenever I could manage it .. and, for the last 3 years pre MP, was not well enough to do that much. Until I can get thru this.. until I truly start to feel better enough to want to and am able to do it for Me, I am quite content to live in the moment and to do whatever it takes to do MP.. Dr Marshall says : " It doesn't matter how long it takes. You have started on a lengthy journey, and the extra pain of speeding beyond a comfortable pace will not yield a comparable reduction in the length of the journey." &: "In any case, the bad news is that you are likely to have herxing for 18-36 months as you work through the phase 3 antibiotics. The good news is that you have been through the worst of the herx by the end of the first 12 months." & "It is really tough putting your head down and working through the first 12 months of the MP. I think that unless folks understand how dangerous these diseases can be, then there is going to be little hope of success in beating them." ..Trevor.. from FAQs How long does the Marshall Protocol take? Why does the Marshall Protocol take so long? |
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Jill Member in Phase 2/3 
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Hi Aussie Barb, you have made a good point. We always try to hide how sick we are for our families, and eventually we just have to say "enough". I want to do all of those things, but I also want to make progress on MP. If we keep stopping to take care of family business, it may take more than 2 years. And how many times do we have to explain that no, we are not feeling better, yet. In fact we are feeling much worse. But this time there is real hope, which makes a big difference to us, and we can only hope, to them. I want to visit my mother who is not well and 85 years old, having had to give up her care to my brother (bless him). But they live 7 hours away, daylight driving makes us sick, night driving with headlights has the same effect. I'll probably do it, soon. But know it will cost me a lot, and only the MPers will have a clue how much.. At the rate I've been going, it may take more than 2 years anyway, very frustrating. Hang in there, as Barney says "we will make it" (bless Barney, too) |
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Aussie Barb Research Team
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Thank you Jill, I was under this pressure at Christmas time too, and I remembered and decided, That anyone is welcome to come and see me if it is important to them.. otherwise I am on this errand.. Barb ... |
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Reenie inactive member
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To all reading Barb's thread, (and of course to you too Barb) It was such a blessing for me to meet those on the MP that are ahead of me and behind me on the MP. The MP takes TIME, but it gives us back our lives. What more could we ask for? I just wish everyone and anyone that has a Th1 illness could have been at the conference to see the people I saw. There were people like Barney that were so grateful to be herxing miserably... hard for ANYONE else but us to understand that. I think the most difficult thing to realize, since this was the FIRST conference, is that people like Belinda, Meg and Dr M were so very sick and many of them were DYING and now they're almost completely well after less than 3 yrs. It will be great to see those such as Barney, Barb and myself, at this level. Yes, we need to 'hang in there and we WILL make it.' |
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Aussie Barb Research Team
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Tuesday March 15th 4pm is Day 3 after abx dose # 4 at this level. abx combo #5 dose (25mg mino +1/4 new abx) taken tonight. Benicar 20mg Q2-3H day / Q6H night Q BID... Lung herx has settled today. so Benicar out to 20mg Q3H for a change. Liver is high alert, needing / taking Milk Thistle. gut inflammation is high too. fatigue, but no Commitment Fatigue.... |
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Aussie Barb Research Team
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Wednesday March 16th 8.20pm is Day 1 after abx dose # 5 at this level. Q3D Benicar 20mg Q2H day / Q6H night Q BID... I was up thru the night again with bad esophageal reflux feeling. finally settled after some Beni. chills, transient. nose palate is numb (mild). gut inflammation / milk thistle to manage. constant lung cough herx is kept tolerable by Q2H Beni + Q BID. very tired. |
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Aussie Barb Research Team
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Thursday March 17th 8.20pm is Day 2 after abx dose # 5 at this level. Q3D Benicar 20mg Q3H day / Q6H night Q BID... Easy herx day. If I can call this herxing and be doing MP... it is the easiest it has been for me... and it is herxing. This dose level may be winding down? .. I seem to have experienced so many aspects of herxing.. already so far.. I am amazed and wonder what can be next.. (eek) hard antbite cramp in chest / heart area and down left arm this morning.. heat bag relieves.. esophageal reflux relieved by Benicar. still taking Milk Thistle for gut and herxy body odor. some relief. transient numb palate /teeth. can feel my lungs but a better day. still much puffiness.. very tired. brighter this afternoon. I am not so sluggish tonight. but I want to feel better than this before I say I am anywhere near good. still feel pretty awful physically yet.. strong mentally emotionally. aahh well, it is all happening.. |
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Aussie Barb Research Team
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continuing Thursday March 17th 11.30pm is Day 2 after abx dose # 5 at this level. Q3D woken 11pm Q54H with heavy pressure herx in diaphragm and lungs area. took extra Benicar..had to get up.. gut inflammation.. esophageal reflux as well.. relief coming from Benicar.. |
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Aussie Barb Research Team
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Friday March 18th 8.20pm is Day 3 after abx Q3D abx combo dose (25mg mino +1/2 new abx) taken tonight. Benicar 20mg Q3H day / Q6H night Q BID... herx is very mild today. transient mild numb palate to teeth. gut inflammation. esophageal reflux. fairly constant pain in big toe.. hips hurt when lying on them.. fatigue. crampy feel in back transient. herxy body odor continues / helped by milk thistle. by the puffiness I can see that this is a big job that is being done, and has to be done, and that it cannot be hurried.. it will take as long as it takes.. I just have to keep chipping away.. am very tired, sluggish. emotionally stable. More mentally emotionally stable. tailbone soreness that I used to suffer is no longer here. and no more of my feet hurting when I first get out of bed.. am very slightly more physically able than I was. |
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Carolyn inactive member
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Hi Barb, So nice to see you write "mild herx today!" Yippee! Carolyn |
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Aussie Barb Research Team
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Saturday March 19th 7.20pm is Day 1 after abx Q3D Benicar 20mg Q3H day / Q6H night Q BID... Thanks Carolyn. This is the most non herxingest herx I have ever had.. apart from fatigue and inability to *function* mentally ( which I would tell anyone else was herx...and yet for MySelf have been declaring as non herxing.. )... I feel no physical herx till 3 minutes before Benicar due time .... cough cough.. amazing.. My skin has also been herxing again for the last few days.. hands that feel wrinkled from being wet too long, and they are not at all wet.. and oily skin.. herxy body odor / taking milk thistle.. some very mild cramp in Heart area at times.. (all this and I say no herx... hmm .. ) and if I havent taken the Quercetin for the day yet, I start to cry..... no I am not herxing.. hmmm.. well it doesnt feel much like herxing.. This must be a good reason to write a Report ....... to remember and put it all together... |
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Aussie Barb Research Team
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Sunday March 20th 4.20pm is Day 2 after abx Q3D Benicar 20mg Q2 or 3H day / Q4H night Q BID... Herx: if I didnt know these things were herx, I could explain them away as being tired or something else.. I was up thru the night with gut herx/inflammation. Very tired day, I feel awful really if I stop to think about it.. if I was a healthy person, and felt like this, I'd think I was dying... but we are so accustommed to living like this.. that we say we can *manage*. and we do.. today if *any food touches my *troubled tooth, it is the "chewing on metal feeling///... I am happy, all is well, I am on my way to recovery.. 6.30pm: My brain turned into marshmallow the last couple of days, and I was tempted to write it off as something else... but I did come to see that it was *a different kind of* herx than I was accustomed to.. and yes I have crying as a herx symptom.. The beni, with the backup of Q, supports me thru all this.. and I am able to go with the flow and let it all happen.. I dont push myself mentally or emotionally or physically.. MP is a *different kind of* Journey.. and at last we are *on the road to* SomeWhere!! |
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DaveW Member
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(((Barb))), I suspect that the trouble you are having getting started - reflects the tremendous potential improvement that awaits you once you get rolling. I think that if a person has a very high level of infestation, then they are experiencing significant symptoms (equivelent to herx), just from the normal die-off rate of the CWD. If a person were in this situation, then even a small increase in the kill-off rate could result in very high herx levels. Such folks could likely get herx beyond tolerance levels just from limiting D and sunlight. They could likely then face similar intolerable herx, just from starting benicar. Of course, the addition of mino would also be a major adjustment for these folks. The tiniest increase in the kill-off rate (which could be thought of, as a percentage) can have major significance when it is applied to a very large population of bacteria (which would be represented by a single number). IMO - the person with the higher level of infestations (and greater struggles getting started), would likely have much more to gain (in terms of better health and feeling better), than those folks with lower levels of infestation. We pay a bigger price - but the prize at the end should also be larger! You have demonstrated great courage and strength. Keep your eye on the prize Barb - it's a biggon! I also wanted to address your acidy stomach/esophogus experienced at night. I sometimes experience the same. I had a stomach motility study done several years back - which revealed "gastro-paresis" (or, slow stomach emptying). My stomach took approx 15 hours to empty a meal. When the stomach does not "push thru" food to the intestine, the stomach reacts (somewhat automatically) by pumping in more acid to increase the digestion rate. This is where all that excess acid comes from. When mine is bad I take Pepcid AC (10 mg famitodine - available over the counter in Canada and the US) - which takes about 1/2 hour to become effective - but looks after the problem 100% for at least a half a day. This really helps me sleep. When the problem is not severe, I have found that calcium can give immediate relief (as it neutralizes the acid), but for me, it can cause a "rebound effect" of even higher acid levels an hour or two after ingestion. Somehow calcium (in any quantities) also disrupts my metabolism. For example -it permits me to return to sleep, but then I wake up a couple hours later - wide awake (even though I have not had near enough sleep). When I wake up with a really really bad case of acidity, I both nibble on a calcium tab (for immediate relief), as well as take a pepcid (which kicks in before the rebound from the calcium). I have also found that not eating in the evenings really helps - especially spicy and canned foods. I had these gut symptoms for a period of about 3 years - ranging from about 6 to 9 years ago. The only thing the Doctors could find, was low levels of inflammation in my stomach lining - which they could not explain...(at the time - without the MP). The MP antibiotics have "re-aroused" the high acidity symptoms in me once again from time to time - so I know they are herx, and have every confidence that they will pass in time. I hope some of these suggestions may be of help. (Especially - try the Pepcid AC if it is available - you will likely be surprised at how well it works). All the best Barb. We're all in your corner! - DaveW |
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FeatherRiver Member in Phase 2/3
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Hi Sweetie - I've recently been blessed with the reflux issue in the middle of the night - I have found sleeping with extra pillows propped up and I think you were the one who recommended the charcoal pills - they are a miracle for me - work in an instant - and I remember someone saying to take them 2 hours after the Ben. I'm glad the Milk Thistle is working for you, I thought that was mainly for the liver - I'm also having real issues with coughing - so I feel for you . I just started my 24 yr old son on the MP, oh my, I had no idea he was so sick - now there are three of us in our home on the MP - this is REALLY special! God bless |
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Aussie Barb Research Team
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Thank You Dave and FeatherRiver, I use the Benicar as my first med of choice for all symptoms, including the reflux. I take my Benicar in 20mg (half tablets) as often as required... which is most often @ Q2H.. and sometimes has to be even sooner than that. charcoal was what I used pre MP. and now that I have Benicar I dont use charcoal. Milk thistle: you may have read here that I have constant high gut inflammation and herxy body odor.. which has liver involvement. I am trialling the addition of 1 dose of MT per day. as Dave says, I obviously have high inflammation..and therefore resulting sluggishness of my body.. but the Benicar has been my protector from the start.. Thank you, Barb ... |
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Aussie Barb Research Team
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Monday March 21st 2.40pm is Day 3 after abx Q3D no abx today.. prob tomorrow (day 4) Benicar 20mg Q3H day / Q4H night Q BID... Herx is mild (she says). Teeth on Left side are supersensitive to any food or fluid.. all basic herx symptoms remain.. high puffiness. gut inflammation..brain. painful hips on lying. mild cramps in Heart and chest and rib muscles transient. skin herxing continues. am waiting an extra day this time for a bit of body catchup.... |
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Aussie Barb Research Team
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Tuesday March 22nd 12MD is Day 4 after abx Q3D abx.. abx combo #6 dose (25mg mino +1/4 new abx) taken tonight. Benicar 20mg Q3H day / Q7H night Q BID... slept really well last night. I have had a note. "the protocol seems over whelming. Do you feel you are much better?" so as always I reply on the Board.. Doing MP is a big commitment and does take *some time* and effort.. and I am worth every bit of it! Dr Marshall says: "In any case, the bad news is that you are likely to have herxing for 18-36 months as you work through the phase 3 antibiotics. The good news is that you have been through the worst of the herx by the end of the first 12 months." ..Trevor.. We have been unwell for a very long time.. I know that MP does seem to take a *long time* when Life is calling us... but without MP we would be on our way downhill instead of to Health and a Future, << both of which to me at this time are words still beyond my comprehension.. except that I can see Belinda and Meg and Ms Dale and Dr Marshall able to get around living their lives... How am I? I am still very sick.. too sick to care about going out or doing things.. I feel physically awful. I have been having heavy lung herxing... and I have never been an asthmatic.. but I know that means I have high inflammation in my lungs that is being dealt with.. That gives me great satisfaction to know this.. I have terrible gut inflammation.. I know this has made me so sick.. I look forward to this being dealt with, I also know it is going to take quite some time and herxing to do so.. Do I feel much better? there are aspects of me that I have recognised as *better*.... so I know by the herxing that I am doing, that healing is occurring... and I have these very subtle but important improvements.. My tailbone stiffness soreness from sitting is greatly improved.. some of my skin *things* have improved. I am no longer dependent on antidepressants for basic function.. My physical energy and ability levels are poor. I cannot stand around, I have to go from chair to chair or to bed. I have noticed a very slight improvement lately in that I can eg now get up from the table to get something if I need to. I have a greater sense of self than I have had in my life.. my spirit is stronger. that is inner me.. I am sick yes, I expect to be feeling worse while I get better on MP. and I am happy to do this to *get there*. maybe when I am feeling a little better I too will be straining at the bit, wanting to get out.. I am absolutely committed, and I wont be deterred by the pressure from Family or anyone...and there is much going on that is very important from a family perspective... but when does that ever stop? I have given so much of my life till now.. now it is time to look after me until.... however long it takes.. I told them, "I daresay you will hear from me and see me when I am well enough to be there." (and the unspoken is "but until then....") this is all I can think of at the moment.. thank you for asking, Barb ... see this new FAQ: What degree of healing is possible using the Marshall Protocol? A description of what to expect on the road to recovery, treatment endpoints, and the gap between the public and medicine's perception of successful treatment. |
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Aussie Barb Research Team
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Wednesday March 23rd 5pm is Day 1 after abx Q3D Benicar 20mg Q3>2H day / Q4H night Q BID... slept well once I went to sleep.. I woke feeling miserable and not knowing what was wrong.. pondering... ? all seems quiet... ? no herx... and then I realised that I should take the Benicar more often ie. 20mg Q2H >> with relief.. Brain herxing can sometimes feel very much like no herx.. or, it can be a feeling of flatness, of being paralysed by misery.. no incentive, like no herx.. dramatic waxing/waning of symptoms doesn't always happen. The anxiety of "am I herxing?" can be a herx.. depression and misery, sluggishness and battle fatigue are often not recognised as herx.. The reply to *How 'well' am I feeling right now?* ....may be more telling of the herxing... It is not all *Happy Herxing* ... apart from that: still very puffy, herxy body odor.. can feel my airways hot and tickly even though not actually coughing ... gut inflammation ever present. hot. |
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Jill Member in Phase 2/3
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Aussie Barb, this is a great description of brain herx. Thanks. I'll try to remembe this one ;-) |
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Aussie Barb Research Team
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Thursday March 24th 6pm is Day 2 after abx Q3D Benicar 20mg Q3>2H day / Q7H night Q BID... Have had to increase probiotics to BID the last 2 days too.. slept well.. all is seemingly so *quiet*... seems like no herxing... but I need the Benicar @ Q2H to stay Ok.. interesting.. this is this sneaky herxing / brain herxing.. some other symptoms that havent had a mention, but I was reminded of today.. Pre MP: I have also had *squishy teeth / feeling loose in the gums, and with non-traumatic fractures and the Dentist had been at a loss as to what to do... and then came MP.. I have had *some teeth herx but I expect to have a lot more yet.. pre MP: re Hair loss.. my hair fell out a lot .. and then with MP it stopped.. oh wow! I was impressed... but it has very recently begun falling out again with herx too.. puffiness and gut inflammation continue.. |
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kgg/mpg Member
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Barb, I have to admire your committment. You sound so miserble with all of this herxing and odd symptoms. I am so sorry that this is so difficult for you. I will be celebrating with you the day you turn that corner and start getting a break! I also thank you for sharing your experiences. I plan on starting in the next couple of months and I'm sure will glean from your reports. It also helps me with discerning Mark's symptoms. You both seem to herx similarly. Best, Karen |
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Aussie Barb Research Team
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Thank you Karen, re: "You sound so miserable with all of this herxing and odd symptoms. " I wish not to sound miserable... What keeps me out of being miserable in particular, is Benicar.. taking it, as I do.... in 20mg (half tablet) Q2H or sooner sometimes, and the Q BID to back it up, that, with the direct support of my husband and MPers.... mentally and emotionally I am ok.. physically I feel pretty yuck if I think about it, but by sleeping or being @ MP.com, I can keep my mind directed and I am fine.. I am content in my cave, and I love MP.com.. thanks to all... |
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Aussie Barb Research Team
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Good Friday March 25th 8am is Day 3 after abx Q3D abx combo #7 dose (25mg mino +1/4 new abx) taken today. Benicar 20mg Q3-2H day / Q6H night Q BID... slept well. cough tells me when Benicar is due.. my food tastes have changed. wanting something more tangy! ... and... I have actually been feeling like eating the chicken soup again.. so that means making it.. I was able to help!! ... and I have been able to do some tidying ... all of this is a big change, even if it isnt much and it has taken enormous effort and my back is killing me.. time to rest.. top palate and teeth aching.. and touchy tooth// skin herxing, puffiness and gut constant. Happy Easter!! |
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Aussie Barb Research Team
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Saturday March 26th 4.30pm is Day 1 after abx Q3D Benicar 20mg Q3H day / Q6H night Q BID... quiet herx. diaphragm hit today.. fatigue. mostly able to go Q3H with Benicar.. otherwise still puffy, skin herx etccc.. |
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Aussie Barb Research Team
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Sunday March 27th 8.30pm is Day 2 after abx Q3D Benicar 20mg Q2H day / Q4H night Q BID... Herx is quiet and very sneaky.. if I let the Benicar off to Q3H I become miserable. otherwise I can only feel some transient gut herxing and the slightly scratchy airways.. I couldnt concentrate enough to read any of the Sunday paper.. Have Grandson to stay and will be computer sharing.. hmmm.... Have had visitors, and for the first time in a very long time I felt up to getting into a dress.. *dressed* for company.. and lay on the bed to talk.. |
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Aussie Barb Research Team
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Monday March 28th 1.45am is Day 3 after abx Q3D This can feel like no herx most of the time.. and then the gut will hit (tolerably) for awhile. (feels a bit like I have been winded by a hit in the stomach) but let the Benicar 20mg go over Q2H and the emotional misery quietly builds.. took 40mg Beni @ 8.30pm, and went to bed.. woke 1pm coughing silly, and full on grieving...took Benicar 40mg again, had to get up to suck cough drops to settle, and all is settling now.. all is fine.. good ole Beni... this is easy quiet sneaky herxing most of the time. as long as I keep the Beni 20mg @ Q2H.. 40mg never lasts me the 4H, like 20mg lasts 2H.. |
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Aussie Barb Research Team
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Monday March 28th 5.30pm is Day 3 after abx Q3D abx combo (25mg mino +1/4 new abx) # 8 taken now. Benicar 20mg Q2H day / Q4H night Q BID... feel almost herxless till Benicar is due. I can stay ok as long as I keep the Benicar @ 20mg Q2H.. otherwise cough and emotions .. gut inflammation and puffiness continue.. small transient antbite cramps. and... where once it was my tailbone and joints that hurt from sitting... I notice now, that it is more a feeling of *the chair is hard*.. which is easier.. |
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Aussie Barb Research Team
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Tuesday March 29th 1.30pm is Day 1 after same low dose abx Q3D Benicar 20mg Q2H day / Q4H night Q BID... Verrry sleepy.. very sneezy ... hunkering down in bed and taking Beni and Q helps keep it at bay.. in bed > numb hands, sore hips.. legs are ready to cramp so I take care as to how I move them..] I think I may have found that 2 doses of probiotics per day suppresses the esophageal reflux. teeth are all sensitive.. |
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Aussie Barb Research Team
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Wednesday March 30th 5.30pm is Day 2 after same low dose abx Q3D Benicar 20mg Q2H day / Q4H night Q BID... Benicar need wakes me thru the night. very tired. unable physically and mentally. can still feel my airways herxing. gut inflammation. puffiness. this could be very difficult if it wasnt for a good cause.. as it is, it doesnt worry me. |
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Aussie Barb Research Team
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Thursday March 31st 8pm is Day 3 after same low dose abx Q3D abx combo (25mg mino +1/4 new abx) # 9 taken tonight. Benicar 20mg Q2-3H day / Q6H night Q BID... slept well last night. slow start to the day. Benicar Q2H early in the day and to 3H later as herx seemed to lift. puffy feet may be slightly less puffy. tonight, after abx dose, worst antbite cramp in right rib muscles and down right arm.. heat bag not very effective. left underarm cramping too.. Heart has slight cramps transient. can feel airways but they are *ok* with Beni. |
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Aussie Barb Research Team
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Friday April 1st 6.15pm is Day 1 after same low dose abx Q3D Benicar 20mg Q2-3H day / Q6H night Q BID... slept so well last night. If I take the Beni 20mg Q3H I lag and become miserable and need to catch it up to Q2H again.. very quiet little herx? tired, teeth sensitive, and gut inflammation. puffiness is always more pronounced on the right side.. still herxy body odor. sore big toe on left (mild transient). some very mild chest cramping left side continues. If no more herx tomorrow I will increase abx and take dose on day 2 instead of waiting till day 3. |
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Aussie Barb Research Team
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Saturday April 2nd 8.30am is Day 2 after same low dose abx usually Q3D abx combo (25mg mino +1/2 new abx) increase today. Benicar 20mg Q2H day / Q6H night Q BID... slept well again. Herx is mild. but I have to keep the Beni @ 20mg Q2H to control coughing.. can feel airways and teeth irritated all the time.. and slight transient cramps in heart still. my hair: I normally have very strong thick curly hair. my hair is flatter and thinner from herx.. it is a bit of a shock.. this happened also just after I first became so very sick 24 years ago.. I intend to take the increase in abx today on day 2 as this is a bit boring.. hope it is not too much for my teeth in particular.. I think I can bear or manage anything else.. |
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Aussie Barb Research Team
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re a question about Benicar dosing frequency: There is a documented case of a woman who took a huge overdose of benicar and was ok.. my personal experience is that I find the 20mg Q2H dosing to be what I need most of the time.. and after I have slept and the dosing has been Q6H / night, I feel the need to catch up the blockade, so I take 40mg dose and dose again 20mg 3H later to catch me up.. I take it exactly as much as I feel the need.. which is often.. I have tried to extend my dosing to 20mg Q3H and the misery catches up with me later in the day (after a few doses) so I have to step the dose up for awhile to catch me up again... The other thing that I find helpful is the Quercetin I take BID.. it seems to back up / assist the Benicar.. I can feel the cough, wheeze, tired or anxiety / misery coming back despite just having taken the B.. so I take Q and all is well.. |
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Aussie Barb Research Team
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adding some history here: 12 months ago, my pre MP ACNEM Dr said my PCOS, pre diabetes, hypotension, fatigue, depression, fibrocystic breasts, (estrogen dominance), (endocrine dysfunction), and much else, were a part of inflammatory disease, and very serious .. At that stage, *they* really weren't sure of (didn't know) all the links or the root cause though.. and so were trying to treat the presenting disease symptoms with hormones and diet and supplements. This was better treatment than was available anywhere else at the time, but still of course had limited results.. and then I found MP.. |
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Aussie Barb Research Team
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Sunday April 3rd 7.30am is Day 1 after abx Q3D Benicar 20mg Q2H day / Q6H night Q BID... slept well again. bright enough. Herx is all mild: scalp face: itchy/ sneezy airways: herxy teeth: some numbish and some achey sensitive legs: aching ankles knees thighs. toes: transient sore toes. butt: feels crampish sitting, but not a cramp. |
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Aussie Barb Research Team
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Monday April 4th 6.30am is Day 2 after abx Q3D Benicar 20mg Q2H day / Q6H night Q BID... slept well again.. Herx: is not really specific. is presenting as full body tiredness/sludginess (very). scalp face: itchy/ sneezy airways: herxy puffiness continues skin herxing continues .. makes eyes hard to see from sometimes. blink blink to see.. teeth some sensitive butt: feels crampish sitting, but not a cramp. |
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Aussie Barb Research Team
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Tuesday April 5th 5.30am is Day 3 after abx Q3D will take abx today. Benicar 20mg Q2H day / Q4H night Q BID... slept well .. Herx: was not really specific, presenting as full body tiredness / sludginess (very). The question "am I herxing enough?" going around in my head.. "do I want to be any less able than this? .... answer is no ... am I herxing enough?" still having to take Beni Q2H..... decided that despite any *real* *obvious* herxing will keep going past Q48H into Q72H to test it out.. Go to bed, (had taken Beni and Q) next thing I am mentally emotionally miserable, decided to *push thru* the symptoms rather than take abx which would have suppressed it..... apart from the fact that I was busy *dealing with symptoms.. then the coughing goes to choking, to bringing up clear frothy mucus.. and then relief. slept. wheezy this am.. scalp face: itchy/ sneezy airways: herxy puffiness continues skin herxing continues .. teeth some sensitive transient *hit in the gut* herxing butt: feels crampish sitting.. but not cramp some mild numbing of top palate |
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Aussie Barb Research Team
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Wednesday April 6th 5.30am is Day 1 after dose # 2 abx combo (25mg mino +1/2 new abx) Q3D . Benicar 20mg Q2H day / Q6H night Q BID... slept well. Herx is strong lung herx. re breathing and coughing and wheezy airways. B & Q to manage. cough drops help. Body is aching all over. all other symptoms remain the same, but no mental emotional misery yest. very tired / resting sleeping a lot. another symptom I always forget to mention. any point pressure anywhere on me *hurts*.. it is like it is just under the skin.. and now I can feel that *hurt* in the skin of my legs as I walk.. some mild transient bone pain too.. |
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Aussie Barb Research Team
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Thursday April 7th 7am is Day 2 after abx Q3D . Benicar 20mg Q2H day / Q6H night Q BID... slept well. herx: coughing wheezing is kept managed by Beni and Q... very tired. sleeping resting. all symptoms still the same. no misery. |
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Aussie Barb Research Team
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Friday April 8th 6.50am is Day 3 after abx dose # 3 abx combo (25mg mino +1/2 new abx) taken today Q3D . Benicar 20mg Q2H day / Q6H night Q BID... slept well. Yesterday as there seemed to be little *real* herxing, I felt that I may be able to extend the Beni 20mg out to Q3H.. and I could do it for that one dose, and then not long after, I needed to catch up again.. this is happening any time I try to extend to Q3H or even to Q2 and a half H. The herx is managed well at Q2H, so that is that.. The herx is still cough wheeze sneeze itch mainly but is being controlled by the Beni and Q. all other symptoms continue. no misery. gut inflammation is stepped up again today. I can feel the need for the Beni before Q2h. scalp face: itchy/ sneezy airways: herxy puffiness continues skin herxing continues .. hair tone has improved again. teeth more sensitive transient *hit in the gut* herxing. occasional transient pain. antbite cramps: hard. occasional. fatigue butt: feels even more crampish sitting.. but not cramp Toes fingers bones: occasional aches and pains some mild numbing of top palate/ nose My ability to get up and down from sitting is better and as that is my only exercise so far that is a good improvement. |
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Aussie Barb Research Team
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Saturday April 9th 9am is Day 1 after abx Q3D . Benicar 20mg Q2H day / Q6H night Q BID... slept well recently. ie. I remembered that I used to always wake up at 2am or similar thru the night and am now sleeping till Beni time and sometimes after again.. Herxing is mainly *hit in the gut* herx.. gut inflammation is high.. can still feel the airways herx but all managable with Q & B.. herxy body odor has risen.. puffiness is slightly more.. all other symptoms the same.. no mental emotional misery for a few days! |
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Aussie Barb Research Team
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Sunday April 10th 7.30am is Day 2 after abx Q3D . Benicar 20mg Q2H day / Q6H night Q BID... slept well.. same report as yesterday, but felt physically worse.. body is working hard. Herxing is mainly *hit in the gut* herx.. gut inflammation is high.. can still feel the airways herx but all managable with Q & B.. herxy body odor has risen.. puffiness is more.. all other symptoms the same.. (see prev postings) no mental emotional misery for a few days! |
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Aussie Barb Research Team
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Monday April 11th 8am is Day 3 after abx Q3D . Benicar 20mg Q2-3H day / Q5-6H night Q BID... slept not so well.. herxing is managed to tolerable with B & Q.. lung herxing seems to be settling! still herxy airways but less.. have been able to extend the occasional dose of B out to 3H yesterday. still herxy odor and puffiness and fatigue, other symptoms still the same, so body is working hard.. all good.. recently my jaw aches just from talking on the phone!! some gland ache too at the moment.. re itch and sneezy and aches in big toe and toes and fingers, see Amygdala Link... re brain herxing healing.. My taste is changing yet again.. I am *able* to eat an apple again.. I couldnt 'bear to' for so long.. |
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Aussie Barb Research Team
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Tuesday April 12th 5.30am is Day 2 after abx dose # 4 abx combo (25mg mino +1/2 new abx) taken yesterday Q3D . Benicar 20mg Q2-3H day / Q6H night Q BID... slept well till 3am Beni. got up.. Lung herx is less, but still there.. it is a relief to have less wheeze cough.. the gut is herxing more.. *hit in the gut* feeling, and diaphram and other pain.. eased by B. all other symptoms continue same. my body is working hard.. so I have no strength to stand or walk around other than the necessary... I am content, and happy to be on the MP adventure.... |
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Aussie Barb Research Team
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Tuesday April 12th 4.30pm is end Day 2 after abx Q3D . Benicar 20mg Q2H day / Q6H night Q BID... Gut herx all day.. very tired.. all happening.. big toes get quite achey.. |
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Aussie Barb Research Team
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Wednesday April 13th 3.30am is almost Q48H after abx @ Q72D . Benicar 20mg Q2H day / Q5H night Q BID... woke for Beni.. could feel lung herx.. coughing choking again... got up. cough drops.. am ok.. |
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Aussie Barb Research Team
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Thursday April 14th 11.00am is Day 1 dose # 5 abx combo (25mg mino + 1/2 new abx) today Q72H . Benicar 20mg Q2H day / Q6H night Q BID... slept well. herx continued tolerably for 3 days. the abx this a.m. relieved the escalating lung herx. hips and legs aching soon after the abx. Has been a very tired bed hugging herx this last time.. other transient symptoms same. toes quite achey. somewhere under the herx I think I sometimes feel a little *Life*.. it cannot be called *energy yet.. |
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Aussie Barb Research Team
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Thursday April 14th 8.30pm is Day 1 Benicar 20mg Q2H herxing strongly but tolerably.. more diaphragm pain. took milk thistle with relief. tired.. am ok, then I am easily *fragile*.. other herx symptoms same.. |
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Aussie Barb Research Team
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Friday April 15th 9.30pm is Day 2 after abx. taking abx Q72H Benicar 20mg Q2-3H day / Q6H night Q BID... airways herxy, neck and head pressure.. body herxy sluggish. had a day off. slept between Q2H Benicar alarms. Big toe achey and numbish. |
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Aussie Barb Research Team
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Saturday April 16th Benicar 20mg Q3H day / Q6H night Q BID... probiotic BID milk thistle once daily for abdo pain. fatigue & sludginess. while sitting still, thinking of maybe increase abx? walked from bedroom to kitchen.. whoa.. body is working hard.. herxing well.. rethink.. lung herx 11pm. settled by B & Q and cough drops.. slept well.. Sunday April 17th 10.00am is Q72H dose # 6 abx combo (25mg mino + 1/2 new abx) today note extension of Benicar 20mg to Q3H day ! / Q6H night Q BID... under the herx there is a subtle feeling of more Life? only small yet. slept well. other herx symptoms same: I will list them for others who wish to understand or recognise their herxing symptoms.. scalp face: itchy/ sneezy at times itchy inflamed wet ears Blurry itchy eyes very small flashes coming from the bottom / side of eyes teeth sensitive acute sense of smell some mild numbing of top palate/ nose /lip esophageal herxing: also involves swallowing a bubble of air at times, when swallowing water eg. chest airways: herxy coughing to choking hands feel as if in water for too long.. and are not wet.. skin herxing continues .. underarms itchy herxy body odor mild chest crampy Heart area, goes down arm. antbite cramps on rib muscles and down arm: hard. very occasional. relief by heat bag. transient *hit in the gut* herxing. gut inflammation continuous diaphragm / liver herxing fatigue sludginess butt: feels crampish sitting.. but not cramp hips thighs knees ankles legs ache in bed Toes fingers bones: occasional aches and pains Big toes strongly achey puffiness (noticable on feet) continues |
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Aussie Barb Research Team
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Monday April 18th Day 2 Benicar 20mg Q2H day / Q4-5H night Q BID... probiotic BID milk thistle once daily for abdo pain. Re: note extension of Benicar 20mg to Q3H yesterday ! >> alas the need for Benicar more often has caught up with me.. ! lung herxing last night and liver diaphragm pain this morning... so taking the Benicar 20mg Q2H and the milk thistle to try to get back to tolerable again.. |
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Aussie Barb Research Team
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re Lung herx Question: I have been on Benicar 20mg Q2H for almost 3 months to keep the lung herx managable.. + the Quercetin helps as a necessary backup to the Benicar. if I try to take B Q3H, is not enough to control it. what is it like? like a wheezy, tickle, hottish *irritable airways, that develop into a cough or choking if not nipped in the bud soon enough.. can be worse when I lie down at night. if it gets to chokey, I make sure to have taken all meds and also use cough drops to help.. The meds are the best management tool.. keeping them right keeps it all managed.. |
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Aussie Barb Research Team
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Tuesday April 19th Day 3 Benicar 20mg Q2H day / Q4H night woke me. Q BID... probiotic BID milk thistle TID yesterday for abdo pain. My body did not like the Q2H Benicar idea at all, so I had some catching up to do yesterday.. with quite some liver pain, which the Milk thistle, B & Q all helped in their own spaces.. the coughing had increased too, and the meds are settling that as well... |
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Aussie Barb Research Team
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Tuesday April 19th Day 3 9.40pm dose # 7 abx combo (25mg mino + 1/2 new abx) today due Q72H but taken Q60H ish Benicar 20mg Q2H day / Q4H night woke me. Q BID... probiotic BID.. milk thistle TID today again for liver discomfort. Today was like suspended animation.. I'm not going to try Q72H between abx again at the moment.. I become so *suspended* that I dont go and take the abx I need to take to get me out of it.. herxy airways tonight. no color in my face yet.. My nails are very strong and no cracked heels.. |
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Aussie Barb Research Team
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Wednesday April 20th Day 1 6pm Benicar 20mg Q2H day / Q4H night woke me. Q BID... probiotic BID.. milk thistle once daily today for liver discomfort. my brain is half asleep today still and I have had a nice visitor... a friend I hadnt seen since 1970... I wasnt like she remembered me.. but ahh well, I am still here! and I'm doing MP! |
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Aussie Barb Research Team
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Thursday April 21st Day 2 7am abx due tonight. Q48H Benicar 20mg Q2H day / Q4H night woke me. Q BID... probiotic BID.. milk thistle once daily. herx is alive and well.. woke coughing for Benicar. blurry itchy eyes. ears wet itchy inflamed. itchy skin, scalp, underarms. nausea. gut inflammation. hard antbite cramps under and down right arm and very mild and fairly constant in Heart area . other herx symptoms continue.. |
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Aussie Barb Research Team
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Barb's timer tips.. see Aussie Barb uses: TIMER LINK My Digital electronic timer can be found in the cooking section of the Big Stores. I keep the pill case with the days half tablets in; the timer; and a bottle of water together near me at all times.. ..as I take my Benicar 20mg Q2H.. timer rings for 60 seconds I think: I hit *stop switch. 2 pings to *hour switch (to set for 2H) and 1 ping to *go switch. Take Benicar. can do it in the dark. and so any time I look at the timer I know how long till the next Benicar is due.. and when it is close to due, I start coughing anyway.. and I keep a track of the abx due time by looking at my Progress thread on MP.com.. or I used to write a note.. 2008: It is usually best to have enough Benicar for Q6 hour dosing or more. Q8 dosing leaves no room for error. It is good to if you are able to listen to your body and learn to use Benicar as needed. During a 'crisis' situation, an extra 20mg of Benicar may be taken sublingually with or between each three or four hour oral Benicar dose. This is especially important for folks who have GI tract inflammation. I set my alarm for 6H each time I take the 40mg Benicar. and if I do need to take it before, so be it... I reset it.. if not, it is right for the 6H. Have a dosette and reliable alarm system. Always carry spare meds (and water) with you. |
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Aussie Barb Research Team
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Friday April 22nd Day 1 7am dose # 8 abx combo (25mg mino + 1/2 new abx) today taken Q60H ish Benicar 20mg Q2H day / Q6H night Q BID... probiotic BID.. Stomach herx. nausea. some salivating. esophageal discomfort continues. gut inflammation. lung herx continues. I keep all to tolerable using the meds as above. |
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Aussie Barb Research Team
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I looked back at some of my earlier posts, and I could see how I was in a hurry to extend the antibiotics dosing from the Daily that was all I could tolerate.. and extending was only able to happen once I added the 2nd antibiotic.. and then I increased the dose and had to decrease it again.. The focus can tend to be on how and when to increase abx.... on being goal oriented.. I have now found the day to day focus of the MP to be in managing the dosing and frequency of meds to achieve the Goal of safe and tolerable bacterial killing / herxing on the day. |
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Aussie Barb Research Team
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Saturday April 23rd Day 2 1.30pm Benicar 20mg Q2H day / Q6H night Q BID... probiotic BID.. chest / airways herxy. gut. sleeping a lot. |
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Aussie Barb Research Team
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Sunday April 24th Day 3 Benicar 20mg Q2-3H day / Q5H night Q BID... probiotic BID.. herx chest. fatigue++. sleeps rest. full body fatigue/ herx all day.. Monday April 25th Day 1 3am abx due Q72H this am. Benicar 20mg Q2H day / Q5H night Q BID... probiotic BID.. no liver pain so no milk thistle x 3 days. more fatigue. more night waking. full body fatigue/ herx. |
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Aussie Barb Research Team
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Monday April 25th Day 1 5.30pm dose # 9 abx combo (25mg mino + 1/2 new abx) today taken Q72H Benicar 20mg Q2H day / Q4H night Q BID... probiotic BID.. lung and gut and body herx continues. all tolerable. tired.. |
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Aussie Barb Research Team
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Wednesday April 27th Day 3 5.30am Benicar 20mg Q2H day / Q4H night Q BID... probiotic BID.. lung and gut and body herx continues. nausea. fatigue. |
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Aussie Barb Research Team
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I should probably write a summary once a month... I have been fairly herxy unwell recently. can see no lights at ends of tunnels while in this phase. no glimmers. just doing the work of herxing. so I know it is all happening. The herx is lung airways / can go to cough wheeze at times. gut.. / pressure feels like a pressure against me.. and full body effects: of puffiness, very sluggishness. inability to just stand anywhere.. can feel the *fullness / flu-ish* in my body of hard working.. I sit in my office chair, I walk to the kitchen> sit. and back> same. or else resting / sleeping. |
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Aussie Barb Research Team
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.. Thursday 28th April 7am. Today was abx due day. I have decided to go off Benicar just to see if it can be done and how and etc.. Then I began thinking of some of the advantages for myself there may be in doing it.. Some of the advantages for me to give myself a break from doing MP may be: to see how I am without the herx? to get the immune system to stop. and to start the MP again after a break.. > Some have reported less / no intolerable herxing after having a break.. To feel better for a while. The bacteria we are trying to kill are very slow growing, so an abstinence from the MP for a few days or even weeks will not result in a significant increase in bacteria or in bacterial resistance. This break may provide me with an opportunity to assess my symptom relief without the confusion of Herxheimer symptoms. Because it is ok to have a break. because I have been doing it tough for a long time. because our son has to have an op someday, maybe soon..? and if I get this worked out now..... and..... I can assess how much better I am without the herx.. and whether I can go off MP to go and be with him thru that. without having to suffer the inevitable flares from light exposure and Benicar. so that I can know what to expect ... and so I can report back to you all... I have begun: I took my last Benicar 20mg @ 4am (will take no more till I decide to come back into MP) and then took 25mg mino 6am, with the idea of taking it more frequently prn (probably TID) to hold the herx at bay till it subsides. will continue wearing NoIRs.. Like the MP I am a work in progress so I reserve the right to change my mind on any or all of this .. I will be continuing @ MP.com of course... |
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Aussie Barb Research Team
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Today has gone well. I am wearing NoIRs / avoiding light. I noticed that stress increased the herx immediately. I have been doing it tough for a long time. (although I find that difficult to admit) I feel sicker after 9 months on MP than pre MP because of herx. Among other reasons, it is good for me to take a break to let my body catch up, and to assess the healing I may have underneath the herx. The last few weeks have been becoming more difficult. I need a break from herx... it is positive all round.... a learning and preparing and healing experience... I will continue to report the experience.. |
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CLefelt Member in Phase 3
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Dear Barb, I am sending good wishes for you during this stage of your progress. You are so sensible and caring and have helped me so many times on my difficult journey, and I want you to know I'm thinking of you. May you return to the MP and the killing of creepy critters with renewed strength. Carol |
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spacee inactive member
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Dear Barb, We are all behind you and understand. We have to be flexible to the changes life brings us. I am quite interested in learning about how you feel after the last months of rough herxing. You are in my prayers and you son too. Life doesn't stop just cause we are on the protocol. Yes, you are still on the MP even if you are taking a break. Hugs...and thanks for all that you have been to me Spacee |
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Aussie Barb Research Team
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Thank you all.. Friday April 29th 3.30am Last evening I could feel myself *struggling thru fatigue.. and when I drank water, it was more pleasant.... the taste..... and the esophageal herxing gone.. different swallowing. I took abx before bed, to see if I could get some more sleep time. slept well. Have woken 6H with anxiety herx and herxy body odor. I have no *set plan.. I will see where and how this takes me... to feel the experience.. |
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Aussie Barb Research Team
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9am ie 6H ..... thank you for all wonderful support. sleeping a lot. woke lung herxy. esophageal swallowing herx. emotionally fragile. took mino 25mg. will relieve. staying in cave. diligent light / D avoidance. |
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kgg Member
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Barb, wanted to give you a (((hug))). I have been concerned with how badly you have been feeling lately. I think it is a smart decision to stop and assess. Wondering why you are continuing with the antibiotic? Won't this continue to make you feel worse? Mark stopped both Benicar and Mino a week ago. He is sleeping an incredible amount but is feeling better every day. I hope you too will feel better quickly. Best, Karen |
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Aussie Barb Research Team
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Thank You Karen: This all began when 2 Members who needed a rest from running immune systems / intolerable herxing asked me if and how they could go off Benicar ... and that means comfortably without the herx raging further. With the knowledge of how it could be done.. I needed to test it before I suggested it for someone else.... so that I had walked the talk.. I planned that I would need to, and have continued to take the abx to control the running immune system / herxing.. I spoke to Meg about this.... and Dr Marshall has always recommended a break *every few months*, so I trepidatiously began by stopping the Benicar. Then ....when I thought about it more I realised all the reasons why it would be good for me to do this for myself anyway.. Previously re my son, apart from the fact that I am too ill to go anywhere to be with anyone in my present state of herxing health....... What had bothered me particularly was, that yes I could go on a maintenence Benicar and abx dosing, but still was the diligent avoidance of light to contend with.. something I have not the energy for doing.... and not the ability to be *any more* sick than I already am.... By stopping the Benicar as well, solves that problem... The Benicar blockade is removed, and the effect of light fluctuations with it. I can wear NoIRs quite easily... but if I am to be attending to Family business... 1. I have to know whether I will feel better than this without herx... and 2. I WILL be subject to light, and I need to do this in the easiest, most comfortable way possible for me.. Some Members have gone off MP for a break and have come back to feel better than ever.. so I am hoping to be one of them.. and I am hoping to be able to help others who have been or are in similar situations... I planned that I would need to, and have continued to take the abx to control the running immune system / herxing.. It is now 32H since Benicar and I am still herxing... so Light will be added gradually as the next step to stop the herxing... In doing this I am able to see my symptoms and herxing and how I was, more clearly, more objectively. It is all for the good.. I have spoken to Anne P (whose computer is out of action atm), who also needed a break from intolerable herxing, and she has gone off her Benicar yesterday morning and her herxing has stopped immediately with no need for abx. Anne is also, like myself, planning to continue MP again... after a break.. |
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Aussie Barb Research Team
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8.40pm am still sick and weak to stand.. my immune system still running. I feel the herx begin pressing and I am taking mino 25mg Q6H. will take mino 50mg to go to bed tonight to see if I get a longer time / sleep out of that. I'm not in a hurry to stop the herx as it isnt intolerable... I want to learn what I can from the experience / and to assess how I feel after I stop herxing. |
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DNStog Moderator 
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Barb, Want to cheer you on in your struggles since you're always there for others, and to let you know, that I spoke with Angela of SC last night. She had to go back to work in a store...lots of windows and flourescent lights. Phase I had been completed but she was afraid to pursue Phase II. Almost two months after going cold turkey from the MP, she is feeling good. She hopes to continue MP when she can better control her environment. Know what you mean about stress, family crises, and MP. Personally, we are sitting on a time bomb with my elderly parents' health and hubby's cancer remission. I hope to get down that MP "bunny trail" before all H--- breaks out. Hang in there you Awsome Aussie! Hugs from Donna |
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Frans Member in Phase 2 
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Barb, Good of you to take some time off from the struggle. Like I said, sometimes you sounded like you had been hit by a train :-)))) I hope the herxing subsides asap and you will be able to enjoy your progress until now. We are thinking of you and will be reading your posts. Also the best of luck with your son's possible op !!! All best and XOXOXOXOX Frans and Ellen |
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Jill Member in Phase 2/3
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Barb, I am also temporarily stopping the MP, and want to share my experience and encourage you in yours. I stopped benicar but continued abx for 2 days more. There was no difference so I stopped abx, also. I am concerned that abx in low doses without benicar as blockade and to assist in exposing the bugs, may only result in bugs becoming resistant. Only my opinion. And abx did not stop my continual herx anyway. I do feel slightly better, it has been about 2 1/2 weeks. Still a long way to go, and I still feel worse than before beginning MP back in September '04. I am still very light sensitive, and have a flare with the least exposure. I still cover and k-cream and NOir as before, but still flare when I have to go out for anything. It will be helpful to others to develop some kind of "suspension protocol" for the future, don't you think? I hope you can soon feel some relief and be able to help your son Jill |
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Aussie Barb Research Team
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Thank you all.. Friday April 29th 5.30am Day 3 MP break mino 50mg NoIRs on the mino 50mg dose has lasted 9H till I woke with airways and liver herx. There is no way I could go without *something to delay the herx.. While I was doing full MP, the Benicar 20mg Q2H gave relief for 2H, and now the abx is. and I am aware that if I took a larger dose, it would probably last for longer but still be the same (herx) as pulsing mino without Benicar. What will stop the immune system run? as it seems to be that that is debilitating.... as in having permanent flu. I find it difficult to relax the light avoidance. I dont want to take the risk / become sicker. |
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Aussie Barb Research Team
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Thank you all. Meg and I are in touch, and Dr Marshall and I will speak more once he is home. I do not wish to add any more sickness from stopping abx or having sunflares.. Light falling on the eyes causes neurological symptoms such as fatigue, iriitability, aggressiveness, lack of concentration, brain fog, photosensitivity, transient loss of memory, mood swings, confusion, anxiety, anger, neurosis and even psychotic symptoms. << I am not prepared to have that!! I can go back on the MP this minute if I choose to.. but I want to learn about what is happening.. It is appearing to me, that my immune system has been running the whole time and the MP meds have been keeping all tolerable for me... the truth is.... I could not tolerate any less Benicar nor any more abx.. thanks, Barb ... Monday May 2nd: following consultation with Dr Marshall: has advised that taking Beni Q4H does not cause Herx. "I don't think that increasing the dose of Benicar beyond 40mg q8h is going to make any difference to inducing more herx, it should merely create a greater palliative effect on any created herx." "From a biochemical point of view there is no harm in reducing your light exposure to zero, in fact, that is what I would recommend. From a psychological point of view, folks tend to want a little light around so they don't trip over things and so that they feel at ease with their surroundings. Decreasing the light will make your immune system more able to kill the bacteria. But it will also make the brain more stable, and better able to deal with the surges in herx which will inevitably occur." ..trevor.. |
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jolbell69 Health Professional
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Hey Barb, I`ve just managed to catch up on the updates as this week has been very hectic for me!! I just wanted to say that I think you are making the right decision for you!! You need some `time-out`!! You have been suffering greatly for a long time now, and it is time for you to have some R&R IMO. Please keep us all updated on how you are doing, and take good care of yourself!! Thinking of you - as always, Love, Jo.xxxxxx |
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Grace Member in Phase 3
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Barb, enjoy your 'holiday', you have earned it.!!! love Grace |
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Aussie Barb Research Team
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MP break: for running Immune System: re stopping my Immune System: I have taken mino 50mg last night and again this morning. will continue with mino 100mg BID.. |
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BARNEY Moderator
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AUSSIE BARB, YOU GO GIRL!! YOU ARE IN MY THOUGHTS ALL THE TIME. I KNOW YOU SUFFER SO MUCH. HOPE ALL IS GOING TO BE WELL WITH YOUR SON!! I THOUGHT I WOULD SHARE MY EXPERIENCE AT THE CONFERENCE WITH YOU. DESPITE THE FACT THAT I WAS ON MAINTENANCE MEDS TO GO TO THE CONFERENCE (BENICAR 20MG Q3HR, BENICAR 40MG MIDNIGHT AND 50MG MINO DAILY), I FOUND THAT I STILL HAD QUITE A BIT OF HERXING. HOPE THESE FACTS WILL HELP YOU IN YOUR 'TRAVELS'. BEST TO YOU BARNEY |
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Aussie Barb Research Team
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Saturday April 30th 8.30pm I don't feel ready to let the light fully in .. too herxy yet.. as the 6H has come around there was some slight giddiness.. and anytime, there can be liver ... .. and cough comes back although lungs are less burdened.. but I can still feel the Immune System *on duty* feeling.. that is what must have been keeping me surviving the herx, - but also taking me to the feeling of being in a bubble. I may not be as weak tonight? eyes may tend to burn easily at the computer so am leaving NoIRs on for now.. Spoke to Anne P. the feeling wonderful didnt last. she had light effects / mild sickness ..so closed up her house again and will introduce more slowly... and has still been herxing so taking the 2nd abx Q6H still.. NoIRs on or else her eyes burn.. |
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Aussie Barb Research Team
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Sunday May 1st 5.30am Day 5 slept well till 2.30am. woke. lungs herxy. feeling lighter. a little brighter.. maybe even some little vitality... then was tired after being up for a little while, as opposed to being fatigued.. gut inflammation. |
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Aussie Barb Research Team
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Sunday: same as always. herxing lungs liver mainly. fatigue. For those who are wondering....there have been no side effects in going off the Benicar .... but the light sensitivity is unchanged and I am not about to go thru changing it up and then down again later........ as that was not the reason for the break.. the reason for the break was to see if it would stop continuous herxing and taking the break didnt do that either.. any symptoms I have had off the Benicar were the same herxing symptoms as I had on the Benicar.. I am moving on.. |
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Aussie Barb Research Team
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Monday May 2nd 9am Day 1 of MP renew Took mino 5pm last night. wakeful night. Immune System seems to have slowed some.. mild liver lung herxing. The goal has been to find out how to stop the Immune System from overrunning which can also cause some prolonged intolerable herxing. so that I and others may be safe and more comfortable. so that we may have some time off hard / continuous herxing. so that we may assess how we are feeling without constant added herx.. so that I / we may be able to feel better than I / we have and maybe do some Family things? Once the 1,25D levels are down from diligent avoidance of Light and D, and taking Benicar they are going to fluctuate in any light. ie causing symptoms. If one is not debilitated by intolerable herxing the usual maintenence meds dose schedule (daily abx and Q4H Beni) is easy to implement and will largely contain that: (thinking of me trying to go out or with my son - like ordinary ppl) I have recommenced Benicar and abx dosing 6am. I will continue to report. |
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spacee inactive member
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Trying to think of you as an ordinary people.... Can't do...you are way too special Spacee |
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Aussie Barb Research Team
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Monday May 2nd 9pm Day 1 of MP renew the day became more pleasant. still herxing, gut is strong; and lungs milder.. but getting more control. coming out of the bubble. I was able to wash dishes.. and I notice that I can see clearly tonight when I was splitting the Benicar.. ie that I havent been able to see clearly before.. |
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Carolyn inactive member
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Hi Barb, Good luck with your holiday. If you remember, I took off 2 weeks, but I didn't feel a whole lot better until I went back on meds. Since my holiday, I have had more good days than bad days. And, my bad days aren't nearly as bad as before my holiday. So, good luck to you and thank you for being there for me! Carolyn |
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Aussie Barb Research Team
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Tuesday May 3rd 3.30pm Day 2 of MP renew A good day. I havent experienced this for a very long time. it is not till I am experiencing the difference that I can see where I have been and what it should have been.. I have been able to do a few small things. The Immune System is still on *run, but slowing. I am still herxy, skin some, so eyes again, lungs mostly, but is managed with the Benicar 20mg Q-3H and mino.. |
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Aussie Barb Research Team
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The lifting of the overall intensity has enabled me to identify the different herxing symptoms more clearly. After being able to see so clearly last night, this morning my eyes had gone back again.. and I was cleaning my glasses and wondering what was wrong.. Tonight I can clearly identify the esophageal and stomach herx.. a difference in swallowing... hurts all the way down and or is or feels like swallowing a bubble of air.. and a difference in stomach sensations.. "am I hungry? or what is it?" Today the herxing is continuous, but the overall body debilitating effect has lifted some.. |
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Aussie Barb Research Team
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Wednesday May 4th 5.50am Day 3 of MP renew slept well 4+H. last night feet were warm to touch but had a hot cold sensation.. eyes herxy gluggy, airways, esophagus, stomach milder. bit foggy. As this has lifted, I feel to have almost found the *I* in me.. there has been a shift in mental and physical capacity. Mentally and physically, I feel I may even be able to do some sewing mending today? (if I can see).. but I am less articulate. |
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Aussie Barb Research Team
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Wednesday May 4th 8pm Day 3 of MP renew I have been tired today... and have slept .. probably a result of having been able to do a little yesterday.. so I am a bit disappointed.. but ahh well.. herxing continues mildly. skin, stomach esophagus and airways. it doesnt look like it will actually stop. it is all tolerable and ok.. just interesting.. I am not as debilitated as I was before this *exercise*... am hoping to *get on top of it* some, wanting things to be a bit better.... |
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Aussie Barb Research Team
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Thursday May 5th 4pm Day 4 of MP renew Took Beni 40mg + mino 25mg. slept 6+H. Fatigue is holding me down. I am disappointed in how tired I am. have changed schedule and have stopped the obvious herx. the airways are still some tight (which is still some herx) but all stays stable this way. I wonder if the herxing will stop. |
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Aussie Barb Research Team
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Friday May 6th 12MD Feet puffed up last night/ down this morning. Fatigue some lifted. fragile if pushing to do anything. Immune System does seem to be slowing. herx is not pushing me like it was.. is in airways esphageal constant mild. some mild numb palate. |
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Dr Trevor Marshall Research Team
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Barb, The herxing will stop. I can guzzle M+Z+C+B +Benicar all at once without herx. So can 'healthy' folks. . The herxing does stop. Sorry those nasty critters are giving you so much grief ..Trevor.. |
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Aussie Barb Research Team
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Saturday May 7th 7am Thank you Dr Marshall... Maintenance meds dosing to quell herxing: Went to Dr yesterday: I was very weak after my shower. took meds- helped. put lipstick on to look healthy.. 45minutes from leaving home till back again.. I wore my black cape, and a 'hood' of same material which covered my face, and my husband guided me along. Wore my 2% NoIRs inside as well and could see very clearly in the fluoros. He was happy to receive his Professionals pack from the Conference.. DVDs and Papers.. I got my scripts. no ill effects. Feet are still puffy. pitting edema. herx is fatigue, skin, lungs, esophagus / gut.. is all more controlled. I need this rest for awhile.. I have a new keyboard.. is good.. |
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Aussie Barb Research Team
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Sunday May 7th 6am Herxing slowing: Feet are still puffy. pitting edema. fatigue/weakness, skin, lungs, esophagus / gut.. |
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ShrnHml Member in Phase 2/3 
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Barb......my thoughts are with you. Whenever I feel "bad", I think of what you are experiencing, and it minimizes my own discomfort. You have become a "hero" figure to so many of us. It seems you are leading us to the promised land, but the going gets tough for you. Believe Dr. M....that the herxing WILL stop. He should know. You have our respect, admiration, and love. Sharon |
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Aussie Barb Research Team
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Thank You Sharon and All.. Today physical herxing has been minimal.. I have been very tired, feeling in a type of shock.. "one day at a time" helps me to go with the flow.. Barb ... |
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Frans Member in Phase 2
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Hi Barb ! I am wondering, could the tiredness be herx? How was your tiredness before you went on the MP? Wishing you all best, as always !! Sincerely, Frans xoxoxox |
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Aussie Barb Research Team
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Thank you Frans and All.. All support is greatly appreciated.. re "Today physical herxing has been minimal.. I have been very tired," By the physical herxing, I have meant that the actual skin, gut, lungs herxing is slowing now.. and, apart from that, the tiredness herx / debility throughout MP has been more than pre MP yes. I am continuing on a maintenance schedule to 'smell the roses' for a while, to see if I can gain some stability / to see what *stability may be? ... before *starting again / continuing.. |
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Aussie Barb Research Team
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Tuesday May 10th 1.30pm Thank you All so much for all support The physical herxing has all but (not quite) stopped.. I am still finding / seeking stability.. last night I had a bad headache.. I hadnt had a headache for 9 months of being on MP I dont think.. and some depressive irritable anxiety... I was able to write legibly last night! I had been thinking that my weak shakey handwriting was because I had *got old*... This is still a bit rocky.. I am eager to *get in there* again... but I am hanging in for the ultimate good as this is how it has to be for now.. How it has been, was unacceptable for any longer.. I can see that more clearly in retrospect.. I need this break to make a renewed start.. |
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Frans Member in Phase 2
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Still going the right way I see. This is sounding better than letting that train hit you everyday Barb ! Hold on tight, the good days are in your reach !! xoxoxox Frans |
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Aussie Barb Research Team
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Wednesday May 11th 11am Thanks Frans.. I actually feel terrible.. mentally.. perhaps I am trying to go too fast to try to get the Immune System / herxing to stop.. |
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Frans Member in Phase 2
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Sorry to hear that dear Barb! I have a theory. Continuous herxing makes 1,25D go up continuoulsy. Stopping this process leads to a drop in 1,25D. We know of the hormone-shift that can take place in that event, affecting your pituitary. That could explain why you are having an emotional time right now. Giving you lots of xoxoxoxoxox !! Frans |
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Dr Trevor Marshall Research Team
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Barb, Many of the "diseases of old age" vanish miraculously as you recover from this nasty disease. Shaky hands is one of them. Poor hearing, another, and bad memory, another. Try focusing your recovery plan on next Christmas. By then you will have seen even more tangible changes ..Trevor.. |
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Aussie Barb Research Team
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Thursday May 12th 3am Thank you Trevor... I am quite sure that I am having trouble comprehending the degree of illness.. Thank you Frans.. I am stable... albeit because I have tightened the meds schedule in again to delay the herx.. I was trying to extend the schedule too far too fast hoping the I/S would stop... because the physical herx had almost stopped but mentally I wasnt up to there yet.. this is a better place to be... |
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jolbell69 Health Professional
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Dearest Barb, Keep going girl - we will get there in the end. I`m with you all the way!!! Love, Jo.xxxxx |
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Aussie Barb Research Team
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Friday May 13th 6am ... Benicar 40mg Q6H. mino maint dosing to stabilise continuous herxing. Felt *sick and tired/ sleeping resting all day yesterday (rainy day).. but otherwise herxing all 'stable'. headache this morning, relieved by Panadol. not sick this morning. one day at a time.. |
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Carolyn inactive member
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Hi Barb, Glad you are doing better! Yippee! I guess I should also take Trevor's advice and focus on Christmas. By then we both should be feeling like what it feels like to be well. When I started in July, 04, I was focusing on June 05 (my 40th High School Reunion). Unfortunately, I don't feel well enough now to go, but perhaps in a month things will get better. Carolyn |
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Aussie Barb Research Team
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Friday May 13th 8.30pm ... thank you Jo, Carolyn, All... Steady day. rests, sleep.. gut herx is waxing and waning! is like very hard pressure against my gut.. lung herxing is mildly present at all times.. laughing caused coughing / choking .. had to grab water and cough drops.. esophageal herxing back.. lack of taste as well. |
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kathleen Member in Phase 2/3
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Dear Barb, As you've very rightly advised me to be patient and go slowly, you too. It really is hard to read about other people going so much faster, but then some of us hvave been sick for so many years that we must have larger more established populations of bacteria. And especially with you liver problems, slower sounds better to me. I like Trevor's idea of looking forwrad to Christmas. I had been thinking of October, but since the heat in July and August will be so difficult that didn't quite make sense. December and January are always my best months, I think because it's dark and cold. I really hope that your emotions will settle down soon. It's so much better to be miserable and cheerful than miserable and miserable - my very own personal cliche. It's been my mantra for many years because it's really true. You've been such a great help to me, I wish that I could give you some good advice. I suspect that it's more a matter of time and patience than anything else. No giving up, XXOO Kathleen |
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Aussie Barb Research Team
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Sunday May 15th 10 am Thank you Kathleen and All.. Today seems to be a new day.. After adjusting my meds schedules: off and on, and up and down, I actually do seem to have come out of the continuous herxing.. dare I say it.. I'm still needing to rest and sleep.. but the actual other herxing symptoms are coming and going.. back ache going thru to my gut herxing. pushing the limits to bearable when present (I feel like a sook), but not long lasting.. and esophageal. and skin. other transients like numb palate and sore toes, and little cramps.. am mentally and emotionally stable.... |
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kathleen Member in Phase 2/3
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Dear Barb, Fingers are crossed, wood is knocked..... No jinxing! XXOO Kathleen |
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Aussie Barb Research Team
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Monday May 16th 11am In reply to messages: I will tell you answers.. I don't get 'dressed'.. having a shower is exhausting. I stay in my night dress all the time.. and slippers now, as it becomes cooler ... it's not too cool.. is 24C or 75F at the moment.. I reply to posts at my computer table and office chair beside the bed.. and rest or sleep between posts.. I have been sick for at least over 24 years... and I knew when I read about MP that I had a lot of inflammation ... I dont do anything else except the MP board.. which I enjoy. I am unable to read books or to wash the dishes or do anything else .. if I am able, I do whatever I can.. my husband works, is supportive and does the shopping and etccs .. I have no yearning to want to go anywhere or do anything.. In the past, as soon as I had any energy, there has been no stopping me.. so it will happen.. a happy medium would be nice.. I am very happy and peaceful and content, taking one day at a time.. I am so appreciative of all support from Family and online here at MP.com.. I have found that having the break has helped me to get the continuous herxing stopped and hopefully am making a fresh start now.. I'm still coming back in yet.. yesterday the back herxing, around waist level, coming thru to the gut pressure, was the hardest.. |
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Aussie Barb Research Team
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Monday May 16th 4.30pm Have taken 25mg mino + 1/2 2nd abx now.. Have taken mino 25mg 48H ago with some herxing yesterday and less today.. |
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Aussie Barb Research Team
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Tuesday May 17th 7pm mino 25mg. After taking the abx last night I have been in continuous tolerable all body herx.. pressure from backache and gut. very tired / sleeping. |
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Aussie Barb Research Team
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Wednesday May 18th 3pm < abx combo mino 25mg + 2nd abx 1/2 slept well. very tired day, sneezy. otherwise no other physical herx symptoms .. have been waiting it out, having a break, to see what happens...... till now, gut herx starting to hit hard... so took abx combo to settle... |
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Aussie Barb Research Team
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Thursday May 19th 8.30am Full body uncomfortable hard herxing most of the night. it seemed it wasnt going to stop.. and then it has.. aahh I seem to have arrived... at last I have had a herx that stops.. |
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Aussie Barb Research Team
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I think I have arrived... I can herx and I can stop herxing.. my ear popped a real cute pop that I have heard others talk about.. I have had *wet ears* for months.. and I feel some sort of *good*feeling now ... primarily in my chest. I have some spare time between herxing.. this is amazing.. it makes time go slower while I wait now to see what happens next.. I dont feel 'healthy' but there is a release or something.. this is quite exciting.. |
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DNStog Moderator
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Barb, Finally some relief for you...fantastic, far out, way to go, whoo hoo!!!! I'm so happy for you because you certainly deserve a breather, you awsome aussie! Hug, hug, kiss, kiss, Donna |
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Frans Member in Phase 2
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Yippieeeeeeeeeeeeeeee !!!!!!!!!!!!! Great Barb !!!! XOXOXOX Frans |
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Aussie Barb Research Team
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Friday May 20th 6am abx combo taken 40H ago Hard full body herx from 3H to 12H then nothing ` ` ` ` ` ` ` ` ` Pelvic and gut herx 32H to 40H lung herx is mildly there in the shadows... |
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spacee inactive member
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What a rollercoaster trip you have been on! You got rid of the herx that wouldn't stop and NOW you are back. Hugs, Hugs, Hugs. We are all so happy about it Luv ya, Spacee |
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Aussie Barb Research Team
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Friday May 20th took mino 25mg + 1/2 2nd abx earler in the day.. sneezy day.. tired, some dizzy.. gut inflammation.. |
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Aussie Barb Research Team
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Saturday May 21st 4am thank you all.... I am still assessing where I am as I come back in. This is a totally different experience.. since going off and on and up and down with the meds, my continuously running Immune System has stopped. I am having little herx response to the abx at this level now. I am bored with little to sometimes no herx, so I will be increasing the abx later today if nothing more is happening.. Some have commented on their pale skin.. I have been in the dark for 11 months, and although faded, I am still tanned, have tan marks... I wonder if it will ever go away.. |
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Frans Member in Phase 2
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Barb, How do you feel when you are not herxing? Especially compared to where you were before you started the MP? Do you notice any changes, improvements? All best, Frans XOXOXOX |
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Aussie Barb Research Team
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Hi Frans I dont feel better than pre MP yet.. Dr Marshall has said a few posts back to give it till Christmas.. I am really only getting back on my feet from the previous continuity... I am noticing the difference between herxing and no herxing.. The debility I have been contending with has lessened.. I am still sludgey and very tired, but not as weak as I was. I am excited about the possibility of being able to increase my abx.. of being able to do MP. Barb .... |
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Tobi Member
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Hi Barb, Such relief - wonderful news that you're feeling better. Are you able to document something like "THIS is what you do to control runaway herx" perhaps a FAQ if there isn't one already. Or is it too dependent on what specific abx one is on at the time? The work you have done as a volunteer guinea-pig in this area is so valuable. Take care Tobi |
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Aussie Barb Research Team
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Thank you Tobi I thought that those who wished to come off Benicar because of 'intolerable herxing' would need more frequent mino to stop the immune system from continuing herxing... and decided to trial it to make sure... I began the change on April 28th, and here it is May 21st already and still coming back... It has been interesting and a learning Journey as hoped and expected.. and with a seemingly good result.. I continued diligent avoidance of Light and Vitamin D. I do think that I am less light sensitive now that I have stopped the immune system run than when I was in it.. I have been out to the Dr, albeit well covered, with no ill effects whatsoever.. I can comment from my experience that I see a difference between runaway herx, intolerable herx and a continuously running immune system. The continuously running immune system caused debilitating weakness, and can come with or without intolerable and or runaway herxing .... The sinking down down had been a very insidious process, - it happened slowly and there was a blurring of the boundaries of what was tolerable / how much can I take..... Others could see that I was struggling and I kept thinking / saying that I was managing and it was tolerable. Both myself and AnneP felt for the last couple of weeks previous that we had lost the *I* in me / thee.. that we were lost from ourselves, that we couldn't relate to our partners.. and finally decided that it was an unacceptable state to continue in... that we couldnt continue to sacrifice this much of ourselves.. the cycle needed to be broken.. We each responded differently.. Anne it seems, had runaway herxing, and her immune system slowed, almost stopped, as soon as she stopped the meds.. I stopped the Benicar and needed frequent mino to clamp the herx.. Benicar will palliate herxing symptoms. more frequent mino will slow or delay the herx. The question arose for me, "what will stop a running immune system" and there didnt seem to be an answer. not even on google. I decided that I had better ask for what I wanted.. for it to stop.. but decided that asking for balance would be a better option.. and that perhaps normal dosing schedule of abx may stop the run. and that it would take some time. After some time the herxing was slowing, - but with not taking Benicar, my inflammation was coming back and I was losing some of the pelvic nerve and muscle body function I had gained on the MP. That spurred me back onto the Benicar. With going back on the Benicar, I was immediately and happily able to go to QOD dosing of mino without a problem, and then back onto my usual dose of abx combo.. The first night that I herxed hard I thought the MP was over for me.. and then the herx stopped.. a miracle.. After months of needing Benicar 20mg Q2H to bear the herxing symptoms, - Q6H Benicar with the QOD abx schedule is fine now that I have no intolerable symptoms to control. by using the abx to slow the herx rather than trying to use the benicar to relieve the symptoms. I think it is better for me to not go longer than every other day between doses. and I learnt then that I was one who could not wait for the herx to lessen to increase my mino, that I had to increase when I felt worse.. is why I had been on the same dose for months waiting for the herx to lessen to make the increase.. I am looking forward to making progress thru the MP. Barb ... |
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Aussie Barb Research Team
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as per messaged question " Why do you want to start it up again so soon? Why not take a few days off? " Thank you, well, I guess that is a fair question.. reasons.. I am better on the meds than off.. and I am bored out of my wits with no herx... I am so excited to get going now into MP.. |
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Aussie Barb Research Team
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Saturday May 21st increased abx combo to 50mg mino + 1/2 x 2nd abx dose # 1 |
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DaveW Member
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Barb, That is very good news! Even if you should go back into the perma-herxing, your current experience should help you keep faith that it is only a matter of time... I am very happy for you!! and, in the battle of "bugs versus Barb", my money's on you! Regards, - DaveW |
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Aussie Barb Research Team
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Sunday May 22nd Thank you Dave and All.. It is 28H since abx combo and I could easily say I havent been herxing on the increase... but I have mild transient symptoms, dizziness at first, chills, running nose, mild cough wheeze when lying flat, itchy sticky eyes, plus tired / sleeping, heavy feeling. gut inflammation. feeling 'serious' at times, not actually depressed. am 'waiting to see what happens with the herxing..' |
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Aussie Barb Research Team
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Monday May 23rd I feel like I am not herxing much but then was depressed last night and Benicar relieves.. and I had to take it sooner again (5H) today for uncontrollable cough.. and herxy body odor is back.. so, I am going around to 72H again to check if there is more herx.. |
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Aussie Barb Research Team
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Tuesday May 24th 7am abx combo mino 50mg + 1/2 2nd abx taken 7am It is interesting to note the change since the *vacation*. I am less debilitated, less ill now. I am much like I was pre MP, and the symptoms are similar, but I am still unable to *do* any more yet.. I feel close to it in my head, but cannot.. I can see why some cannot know that they are herxing.. so far now is easier than I expected.. and yet I am definitely herxing enough to sometimes have to take the Benicar sooner than the Q6H for relief of symptoms. The puffiness has reduced some.. wheeziness is constant mild. depression herx is controlled by the MP meds.. |
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Aussie Barb Research Team
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Wednesday May 25th 6pm 2nd day of 2nd dose. This is a totally different experience now that the immune system run has been stopped.. it is very much like pre MP disease symptoms, just as herx is described... Quiet but a full on herxing day.. sleeping, chills, hot, feeling the *seriousness*/ *dark cloud* herx again.. mild lungs crackle, cough, deep airways affected. runny nose. palate numbing. gut inflammation. I feel as if body pain / sensation is *numbed down* all over me. an inflamed toe noticable by sight but not felt. All easily bearable as I am able to rest. |
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Aussie Barb Research Team
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Thursday May 26th 6pm 3rd day of 2nd dose at this level. Very tired. sleeping resting. antbite cramps back again, underarm and breast pain. heat helps. same herxing as yesterday. brain lungs chest gut. all tolerable, one day at a time. |
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Aussie Barb Research Team
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Friday May 27th 3am took abx combo 3rd dose of mino 50mg + 1/2 2nd abx ok... I think I have to make a rule. to take my abx QOD and not go into the third day. It is like I go into a point of no return... I get into a herx that I say is bearable in the moment, and yet I am too tired and miserable and mentally incapable of disciplining myself to go and get the abx and take them. I am not actively herxing at the moment, so I have 'made myself' go and take the abx. |
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Brad Member in Phase 2/3
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Barb, Brad found that to be very true, he was waiting for herx to subside to take antibiotic but that just continued the herx. he was much better off when he made sure to take them every other day and not wait for 3rd or 4th day. Paulette |
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Aussie Barb Research Team
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Thanks Paulette and All .... Today is better than yesterday. herx is beginning in gut. today I have put up another dark sheet .... in my bedroom this time - as the winter sun has found its way down and around in to here now.. and thru the blind and the layers.. |
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Aussie Barb Research Team
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Saturday 28th May 5.30pm Yesterday was mostly gut herxing. had to take the Benicar Q4H. the lung herx is always there, and mild. Slept well. Today, no specific points of herxing, - tired and doughy. will focus on taking the abx at 48H - ie in the morning. |
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Aussie Barb Research Team
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Sunday May 29th 6am took 4th dose of abx combo mino 50mg + 1/2 x 2nd abx I became more tired and sludgey as the evening / night wore on, but I knew I only had to get thru the night. Teeth on left top (same ones) are *funny*.. numbing of palate, runny nose, very slight ache beginning in my Right knee.. it is the knee that would ache when I was riding my horse mustering years ago... so it is good to see some *action* here.. |
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Aussie Barb Research Team
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Monday May 30th 8.30am Day 2 of abx combo (abx due 48H tomorrow morning) slept well. I wake for Benicar without an alarm. & I sleep and rest thru the day. The herx feels like I am being pressed against by a board.. the pressure against my body, breathing and my gut.... is managable and tolerable within my Lifestyle of not having to do anything, and being able to rest when necessary. I can feel how sick I am when I try to do anything more. I am reminded of my limitations of not being able to read a book or magazine, or to listen to music... or to handle Family problems... so I am very content to do whatever it takes to ride this out to get to being able to function.. |
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Aussie Barb Research Team
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I have been noticing that my fingernails look better lately... sort of healthier.. but was not sure of the significance..... when I saw Morris's report re his fingernails (thank you Morris)... my nails have never been blue, so I looked to see if I could define mine any more clearly... took off the NoIRs to inspect... and the fingernails and fingertips are *really *pink and shiny...!!!! perhaps the lung herxing is giving me better lung function than I had .. !!! wow! I had played down / denied all lung related symptoms prior to MP, but when I went off the Benicar, that was one of the symptoms that flared up again.. the coughing choking, you know whatting... (more acute.. and worse than the herx) so this looks like some good news!!! |
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Aussie Barb Research Team
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Tuesday May 31st 6pmish Day 1 of 5th dose of abx combo mino 50mg + 1/2 x 2nd abx The body and lung herxing, and sleeping - continue much the same. |
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Frans Member in Phase 2
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Hi Barb ! Ellen and I looked at our fingernails today and funny thing: mine show a white rim where the nail comes from below the skin and Ellen has 2 nails on every hand that don't show that white rim, it is a little blueish, reddish. Do you recognize that? XOXOXOX Frans |
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Aussie Barb Research Team
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Ahaaaaaa Frans & Ellen, That is a good observation.. I had previously noticed that I had no rims on any fingernails.. and now as you ask, I checked the new situation..... tiny little baby whitish rims............ barely visible to my herx blurred eyes are just there!!!! wow!! something is definitely happening.. Also, I see Reenie has reported re dreaming, and Dr Marshall has commented "Dreams return as your memory returns. They are the solid, developing types, which you can follow the logic of, even if you momentarily wake up .. etc" Just this morning I had woken and for the first time in ages was unusually able to recall and describe this great long dream to my husband... Thank You both, Barb... |
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Aussie Barb Research Team
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6.20pm Wednesday June 1st Official First Day of Winter Day 2 of abx combo.. due in 12h My Family's symptoms are flaring as the light has lessened.. I am not having as much physical herx, still some lung herx and palate numbing, but the tiredness and going towards depression tonight is heavy going but tolerable as long as I take care. I can sleep thru the night and take the dose at Q48H in the morning.. |
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Aussie Barb Research Team
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8am Thursday June 2nd increased abx combo dose: mino to 75mg + same 1/2 2nd abx coughing. settled by abx dose.. otherwise ok.. |
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Aussie Barb Research Team
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Friday June 3rd 9.30pm: abx combo due Q48H tomorrow morning no *particular* herx.. all same .... sludgey again / still. hair flat, throat a little sore. crampy belly today. |
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Aussie Barb Research Team
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Saturday June 4th 7.30am took abx combo mino 75mg + 1/2 2nd abx @ 48H #2 Left eye and nose some tolerable burning. skin herx continues. herxy body odor. esophagus. mentally blocked / sludgey. emotionally stable. I expect to pick up some after the abx dose and am at my limit on the 2nd day as expected.. there is no way I could make it tolerably thru a third day at this point.. no more remembering any dreaming. I notice that I have some spots on the top of my hand which were previously invisible, now visible because of some very small white flaking which appears to me to be some form of healing of these ?sunspots.. improvement noted: a very rough patch of skin near my elbow has almost cleared, happened very quickly. |
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kathleen Member in Phase 2/3
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Dear Barb, I'm so impressed! You're really zooming ahead. it's wonderful for you and very encouraging for me. Kathleen |
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Aussie Barb Research Team
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Saturday June 4th 6pm Thank You Kathleen... I just have to write to say that I am just now feeling brighter .. this is a nice little break for me to come out of the sludge.. ahhh... I will be better prepared for my second day tomorrow now.. |
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TickTock inactive member
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Barb, i haven't read your thread in a very long time. Just want to say how amazing you are!!! You've been a rock for me, and you've been suffering so much. Somehow you manage to be there for all of us while experiencing such bad herxes. You're truly special. Just wanted to say thank you for your guidance and strength. I'm praying that you get back on track soon! xxxxoooo Tick Tock |
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Aussie Barb Research Team
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Sunday June 5th 3pm Thank You TickTock.. the Board is at least something I can do and enjoy while herxing .. and between resting..... I appreciate all support very much. Thank You All. Today is sludgey second day. the herx is crampy belly again today ( I am not liking this much), tired, and a bit flat. lung herx hasnt completely gone, is in the background, mild. skin and eyes/ maybe eyelids herx seem to be linked as far as blurry goes. ears are usually wet inside a lot, but not today. |
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thaiboxer Member in Phase 2/3 
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TickTock wrote: Barb, i haven't read your thread in a very long time. Just want to say how amazing you are!!! You've been a rock for me, and you've been suffering so much. Somehow you manage to be there for all of us while experiencing such bad herxes. You're truly special. Just wanted to say thank you for your guidance and strength. I'm praying that you get back on track soon! I would also like to share with everyone my appreciation. Thanks Barb. |
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Aussie Barb Research Team
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Thank You Thai. Monday June 6th 6am took abx combo 75mg mino + 1/2 2nd abx @ 48H #3 I couldnt get to sleep last night for crampy belly / inside gut herx. I was mentally and emotionally pushed also. I had taken pbx and Q, took extra half of Benicar and some Tylenol and finally.. some relief. Knowing it is all for a good cause keeps it ok.. |
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Aussie Barb Research Team
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Thank You All.. Tuesday June 7th 1pm Day 2 / abx due in am @ 48H yesterday was a miserable low point.. Frans reminds me "I guess that has very much to do with what Dr Blaney said on the DVDs. Almost all your energy is being used up by your immune system right now. And considering the CWD-load you carry, your body is fighting like crazy right now." << yes Frans it sure is fighting.. this is all I can do.. one helluva fight. is probably why I cannot see another inch further than where I am.. mostly I can be content in the moment. Today the gut has relief. I am sleeping very much.. I am using all meds to keep all going.. My natural progesterone spray helps me for depression and function, and I have had to increase to twice a day yesterday and again today .. instead of the usual once.. |
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Aussie Barb Research Team
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Wednesday June 8th 7am took abx combo 75mg mino + 1/2 2nd abx @ 48H #4 I was tempted to leave taking the abx combo for longer, and then realised that the reason was, that I was drifting off into the lost fog again, and this was the very reason I was holding myself to the rule taking it at 48H... so it is all good news. the herxing is happening and able to be managed.. |
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Aussie Barb Research Team
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3pm a lighter day than the last few, phew. lung herx, esophageal, and fatigue are the main things today. emotionally stable today. |
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DNStog Moderator
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Barb, Happy you have some relief from herx although still rough on you. I know how the brain fog messes up dosing. Hugs, Donna |
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Aussie Barb Research Team
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Thank you Donna. Thursday June 9th 1.30pm off abx day I am *out of it* today.. sleeping resting. emotionally fragile. . herx: sinus drainage, need to drink a lot of water, and nausea stomach. wet L ear. burning eyes esp L. Left pinky finger and down that side of my hand has pins and needles (constant). at times when lying down> hands arms go numb/ to sleep, and L hip cramp, legs ache. |
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Aussie Barb Research Team
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Friday June 10th 10am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #5 Yesterday was full on.. I am *sick* most, if not all of the time. I take Benicar Q4H prn. Today I started off more sludgey now less sludgey. must be killing milliongs.. (sic) |
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Aussie Barb Research Team
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Saturday June 11th 2pm: off abx day.. The day brightened yesterday. Today: no particular physical herx. emotional herx difficult. |
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Aussie Barb Research Team
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Sunday June 12th 7 am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #6 I settled the emotional herx by telling myself it was only herx.. (ie not any real issue) and with Q4H Benicar and rest.. I became dead tired and dead slow.. slept well. |
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Aussie Barb Research Team
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Question by private message: re from my progress report " have the lack of taste also distorted taste .. along with esophageal herxing.. is a feeling of reflux, and also, when swallowing it hurts all the way down, and a bubble of air is swallowed at the same time as drinking water." Barb....."do you still have esophageal herxing? Is it gone? better? worse? How do you know it's a herx? It must be uncomfortable." Yes I do still have it sometimes although not as badly as I did have for some time. I havent had the air bubble recently. I can also tell that I have it now when my cup of tea burns going down.. and yes it is uncomfortable. but it is all healing.. I know it is a herx because it is irregular and is controlled by the MP meds or lack of.. and when I had a break at some point, my taste returned.. taste is not right now. it is just so so.. I hope this helps.. Barb .... |
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Aussie Barb Research Team
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Monday June 13th 6.30am: off abx day I had a lighter day yesterday so it may be coming to increasing time.. I will have to assess how today is first though.. hands and feet were aching thru the night. just for interest.. For quite a while now I have noticed that when I have a shower my fingers and toes burn under the hot water as if they are cold and they aren't. I am thinking this will heal with time.. I had a dream last night which I saw as symbolic of my MP Journey .. I was in the middle of nowhere, and even the 1 local resident/s couldnt tell me / were sort of mute about where we were / which way to go to get 'home'. Some of the time I had a travelling companion. and I went and went, around fully paved and wriggly curves and up and down slopes, and all thru this huge, miles long empty house, which had a picture denoting foreign soldiers habitation. sometimes see people I knew, which was a comfort to me, but still not knowing if I was 'getting there'..and then I came to a small town and was looking for signs to see the name of it and couldnt find, and the *important man* turned away and wouldnt say the name. I met these men there whose name was all Ungst.. (!) They said I had a strong handshake, and 1 of them in particular befriended me.. but I had to get on my way.. he gave me a gift. symbolic again. As I left there, there was a huge jampacked herd of cattle.. and 1 dead that I could see between these 2 towering walls of rock... these I took to be the bacteria that would not be able to continue surviving in those conditions.. |
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patrickburke Moderator 
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keep going Barb! It's got to be hurting the CWDB more than it is you. If thats any consolation |
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ShrnHml Member in Phase 2/3
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Barb......what an incredible dream! I'm amazed that you remember so much of it. Is the name "Ungst" a stand-in for "angst"? You seem to be suffering more than most. I am especially aware of that because I know you have had CFS for 25+ years.........as I have had. It makes me wonder if having the disease for so long makes the herx worse. What do you think? Sending empathetic thoughts your way......................Sharon |
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Aussie Barb Research Team
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Dear Sharon, Thank you... that is what I believe the Ungst means... it is quite incredible really.. I am not sure that my herx is worse.. but the inflammatory load seems to be high that is for sure.. as Dr Marshall says " these are deadly diseases". We have been the walking dead.. negotiating a bit here and a bit there by doing all we could to hang in.. until the MP has come along.. since I have recommenced after the break, there is a difference.. The herx has been tough recently, but it is tolerable within my circumstances of being at home close to a bed and being cared for and with no expectations of having to be physically or emotionally present to others... Now, I have noticed a pattern thru the number of doses... of the herx hitting hard, then the physical herx dropping off, and the heavy emotional herx being left, needing Benicar Q4H, and then another 48H of deep general malaise.... and then ready for an increase.. and then back around again.. I could stay in the holding pattern at the deep general malaise, which isnt so crash hot anyway, if I wanted to have a rest.... but like everyone else I am keen to be in an active phase, keen to knock'emdown... Barb ... |
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Aussie Barb Research Team
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Tuesday June 14th 7 am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #7 I had been thinking I was close to increasing but yesterday was tough enough mentally without adding to it ( I even ignored the phone and the front door x 1 each) and I have been awake thru the night with aching legs and gut/nausea/esophageal herx (reflux feeling and air bubble(!), took Benicar @ 4H.. and then this morning as I took my abx the thought of increasing never occurred to me.. so that was that... skin herxing continues with itchy scalp and oily skin. |
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Aussie Barb Research Team
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in 26 days, on July 10th MP.com site will be 1 year. http://www.timeanddate.com/ |
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DNStog Moderator
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Barb, I had itchy scalp for a while and found Nizoral shampoo to be an instant relief. Also found itchy skin sarc lesions tamed with 2%K cream. Hope to see you cruise for a while without the bumpy waves. Hug, Hug Donna |
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Aussie Barb Research Team
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Wednesday June 15th 6.45am. off abx day Thank you Donna for your support and suggestions.. Dizzyness on standing as the abx begins to rev up it's effect towards nighttime.. Herxing thru the night is more pronounced recently. aching arms shoulders, hips legs and lung and gut inflammation / aura feeling of herx. Full body is involved, mental emotional physically, so am resting and taking care.. |
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Aussie Barb Research Team
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Thursday June 16th 8 am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #8 still enough herxing to stay on this dose.. Quercetin helps, and I take the Benicar Q6H with Q4H prn for extra mental emotional or coughing.... .. and keeping to QOD abx. my eyes continue to be blurred from herx.. can see the computer but not smaller things.. not even with my glasses on and NoIRs off.. |
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Aussie Barb Research Team
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Friday June 17th 4pm. off abx day Herxing thru the night again... wakeful till it settled.. sensations thru head and body.. sludgey tired day. the herx at this level is settling.. I could taste a little bit better today. |
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Delray Member
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The withdrawal from society happens because one's brain, hearing, eyes, nervous system and body cannot take the stimulation of noise, and others' movement and energy let alone the response needed from oneself. One feels on a knife edge, knowing that any extra expenditure of energy will result in even more unbearable physical and mental torture. Of course depression is a natural result of the pain and isolation I found this statement to be true to how I feel, but have never been able to say it so simply and to the point. It was a copy and paste, and one I will keep to express to those who don't understand. With hugs to you, Delray |
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Aussie Barb Research Team
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Saturday June 18th 7 am. took abx combo 75mg mino + 1/2 2nd abx @ 48H #9 Thank you Delray.. you may be interested in other Members experiences in this Topic. ............ My herxing is less but still requiring Q4H Benicar not often but prn, and still waking me thru the night last night. so, taking same dose today. All is well. I am ok with one moment, one day, at a time... thank you all.. |
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Aussie Barb Research Team
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Sunday June 19th 9am. off abx day Herx disturbed sleep early in the night. gut. I will list symptoms not because they are bad but as they may be helpful for others.. ears are usually wet but are now dry and feel plugged and R ear was sore to lie on at one point last night.. L eye burns a lot. the feeling goes down into left nostril. I cant see as well with the 10% NoIRs on (inside of course) so I may try the 40% for a while for other than computer... esophageal herxing with reflux feeling and airphagea.. stuffy nose. L upper teeth troubling. legs and arms in particular are sensitive just under the skin.. can feel it in my legs when walking.. I am sensitive to touch all the time, but this is more sensitive now.. toes ache. antbite cramps and muscle 'grabs / 'shifts / catches' come and go.. I can be jumping around in bed trying to get them back in place.. there has been more Memory herxing too.. sudden flashbacks to things. the emotional herx usually comes on later in the day as I need to go to bed.. all is tolerable with meds and management. Some Family / friends say, "you must be bored." (! I have to smile ! ) "how long will this take.." "surely you MUST want to get out" .... etcc..." re the question of exercise etc.. Doing MP is all I can possibly manage at this time.. I will let you know when I get to the point of being able to do more.. I am so happy to be doing MP... especially when I see the desperation on the other Boards.. we have spent thousands of $$ and all of our lives and so much effort chasing for help.. and here it is... Thank you to all for wonderful support.. |
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Aussie Barb Research Team
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Monday June 20th 5 am. today abx combo 75mg mino + 1/2 2nd abx @ 48H #10! another dose at same level... no need to push me too hard.. herxy wakeful night. recently both feet are aching a lot, feel to be 'drawing... and, separately, there is inflammation on old op sites on both big toes.. no pain involved.. must be herx also... strange things happen.. fingers ache a little too.. esophageal still.. |
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Aussie Barb Research Team
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Tuesday June 21st 7.30 am. off abx day. This herx just keeps coming and coming.. amazing.. when I try to tackle anything more than MP, I reach and feel my boundaries.. it takes all my meds to keep me going with the flow at all times.. all managable in this context. herx is mainly diaphragmic and gut today. and coughing when I was due for Benicar & Q.. resting, tired. |
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Mary Member
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Barb, I watch your journey with awe and admiration. You have suffered so much for SO long....and during this past year you continue to give to others. I thank you for all you do and pray you will have a breakthrough to better health. Mary |
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Aussie Barb Research Team
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Wednesday June 22nd 10 am. today abx combo 75mg mino + 1/2 2nd abx @ 48H #11 Thank You Mary... Thank you to All .. the same story continues.. gut, esophagus, nausea, aching feet, inflamed (no pain) toes, tired. and meds all helping.. and resting.. I have been able to stand for a couple of minutes now if I have to.. that is an improvement in strength. |
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DNStog Moderator
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Barb, You are such an inspiration. I complain because I have no energy to do housework or gardening and you can barely stand and complain little. I will have to rethink my own self pity when you are so much worse. An extra prayer for you tonight.Hug, hug, kiss, kiss Donna |
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ShrnHml Member in Phase 2/3
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Barb.....at last I've found your progress thread. I kept looking for you under "Full Protocol", but you are in the "with Q" group. I, too, am amazed by your perseverence in the face of such difficulties. Everyone here owes you so much and sends healing energy your way. OOO Sharon |
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Aussie Barb Research Team
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Thank You Donna, Sharon, All... I need to explain that although I either sit or lie down mostly that I dont feel to be in any difficulty.. I do have a good husband to do what needs to be done.. and I am truly content... and as I can do better I will do better.. I went thru a lot to come to terms with CFS in the early years but I guess it has stood me in good stead now.. I am scared to say that.. as I am so weak by myself. It is only with wonderful support that I am able to be at peace. Thank you. Barb .... |
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Aussie Barb Research Team
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6pm abx day A herxy day for day 1 and for being at same level for 11th dose.. Today I have needed to take the Benicar Q4H for gut, coughing and emotional herx.. |
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CLefelt Member in Phase 3
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Barb, I'd just like to comment on your incredible patience and optimism, while dealing not only with yourself but also with MPers. Sometimes the same questions get asked again and again, and you never fail to be welcoming and supportive. I hope you understand deeply how appreciative and admiring we are! Carol |
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Aussie Barb Research Team
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Thank You Carol.. and All, for all support and messages. your support really helps. Thursday June 23rd 4pm. off abx day. recently there has been more coughing and clearing throat. Today, gut inflammation has been flaring / uncomfortable - even with the milk thistle x 1 per day. and back ache. Q4H Benicar required again today. fragile emotionally.. increasing my Rx natural progesterone made all tolerable, enabled me to go to B @ Q6H. (NP assists my full body function ) I think that when my body function starts to slip may be a sign for me to increase the abx tomorrow morning @ 48H. the abx seem to be supportive of me.. |
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Aussie Barb Research Team
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Friday June 24th 5.30am. today abx combo increase to 3/4 2nd abx + 75mg mino @ 48H #1 at new level slept well. backache. bloating. feet ache. under skin on legs is ouchy. small cramps all over the place. am ok.. |
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kathleen Member in Phase 2/3
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Wow, You are zooming now. Your "break" really seems to have been a good idea. I'm wondering if you're having an easier time increasing with it being dark earlier there this time of year, or if you don't go out anyway, so it doesn't matter? The heat and later sunlight definitely make it harder for me now that it's summer here. But maybe that's just me. Anyway, major congradulations!!!! Kathleen |
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Aussie Barb Research Team
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Thank you Kathleen. Summer or winter doesnt make any difference to me at the moment because I dont have to leave my cave. This increase, I have increased the 2nd abx dose when the herx began to degenerate into an immune system run .. and it has given me relief. |
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Aussie Barb Research Team
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Saturday June 25th 4pm. off abx day. less herx with increase in abx. concentration must be higher yet.. still slow and sludgey but no other obvious physical 'hits'.. a nice little respite.. inflamed toe is still inflamed. gut inflammation.. esophageal. eyes continue blurred. occasional back ache. have been feeling cold around my neck.. it is winter, but it is not really cold (26C / 79F) and is unusual for me.. see ...Childhood Health ... |
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Aussie Barb Research Team
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Sunday June 26th 7.30am. today abx combo 3/4 2nd abx + 75mg mino @ 48H #2 This morning was typical abx due morning. I would just stay in bed and float off into the fog instead of getting the abx into me.. and I had to really make myself focus to make sure of taking the correct dose. bloating or maybe increased diaphragmic herx today. and occasional cramps anywhere. a note. where my NoIRs press against my face and head, leaves a dent.. |
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Aussie Barb Research Team
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Monday June 27th 2pm. off abx day. the herx is a whole of body experience. a weight on me. I am feeling it more emotionally recently. all meds make all bearable. hips legs ache in bed.. neck is still cold - needing to be covered. can feel lungs. other things all the same.. |
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Frans Member in Phase 2
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Aussie Barb wrote: a note. where my NoIRs press against my face and head, leaves a dent.. Barb, could this be due to dehydration? xoxoxox Frans |
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Aussie Barb Research Team
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Tuesday June 28th 7am. today abx combo 3/4 2nd abx + 75mg mino @ 48H #3 Thanks Frans, I should have noted that this is not new.. I began getting puffy 24+ years ago and herxing adds to it.. it will resolve as my body heals with MP. usual herxing. managing with all meds ( I am thankful for all meds). esophageal woke me at 5H, took Benicar - slept well. leg cramped when stretching on waking.. was able to unclamp it more quickly today than sometimes, and no residual pain. |
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Aussie Barb Research Team
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Wednesday June 29th 5.30pm. off abx day. this is hard work but I can do it. esophageal herx flares regularly. antbite cramps on right rib muscles and down right arm so very painful yesterday afternoon / evening. heat applied and extra Benicar and tylenol tabs. overall full body weighed down by herx. managing all with meds. I t h i n k .... my lips may be showing some pink color. still some lung herx happening. |
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Aussie Barb Research Team
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tonight.. more verry painful antbite cramp, left side this time, rib muscles, under arm and down arm.. |
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Aussie Barb Research Team
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Thursday June 30th 7am. today abx combo 3/4 2nd abx + 75mg mino @ 48H #4 Making the rule for myself to take the abx QOD was the best thing.. upper right gum has unexplained inflammation. right big toe inflammation continues. |
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Frans Member in Phase 2
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Wow Barb! You have proceeded far into phase 2 ! You are definitely killing the critters with a vengeance ! Hold on tight dear Barb, they will succumb !!! XOXOXOXOX Frans |
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Aussie Barb Research Team
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Friday July 1st 6.25am. off abx day. Thank you Frans for your support.. After some heavy herxing for a few days, I feel it has lifted some this morning. so far. the antbite cramps have *threatened a few times yesterday, but with consciously relaxing and stretching I was able to avert them.. something that is not always possible.. feet aching.. mostly full body work is happening.. |
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Aussie Barb Research Team
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Saturday July 2nd 6am. today abx combo 3/4 2nd abx + 75mg mino @ 48H #5 This last dose was better but still tough enough. Doing MP, managing all with all meds and good full support is all I can manage in all ways.. take care All.. |
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Aussie Barb Research Team
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Sunday July 3rd 6.45am. off abx day. after #5 of increase of 2nd abx. This has been a couple of days of less than usual herx but yes, still enough to keep me steady thank you.. I think I have worked out a pattern.. I have been a little short on patterns, so I am pleased to find one.. I think that when I increase the 2nd abx I only need about 4 or 5 doses before the herx lifts some, and it is time to increase again.. and when I increase the mino, that level herxes for around 11 doses, and I begin to feel worse not better when I need to increase.. It is gradually sinking into me how dangerous these diseases are.. that I /we are being killed from the inside out.. I had a sense of that, but am only at the wee beginning of comprehending the scale of destruction and mayhem... I had a very special Dr that I used to drive a distance to see. He (unusually) had diagnosed all this fibrosis and inflammation and etccs and tried to tell me how dangerous it all was.. and I thought that I would conquer all... of course I was in denial .... He only knew to treat it with diet and exercise (!) and supplements.. he was perplexed that it wasnt working. I asked him about the root cause, as I have always lived and eaten healthily... and he had to confess he didnt know. so finding MP was the next step!! and I am going to conquer all.. |
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Aussie Barb Research Team
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Monday July 4th 6am. today abx combo I have finally reached the INCREASE TO 100mg mino + 3/4 2nd abx @ 48H #1 Happy 4th to the US Members.. The herx from the last increase of the 2nd abx had waned.. I had 2 days that were better than previously experienced. no jumping around or able to do more... just less herx.. Last night, from 36H till I went to sleep the depression anxiety herx stepped right up.. I could have chosen to take the abx sooner but I decided to treat it instead, and go to bed, and get thru till the abx due time. sleep helps.. I woke at 3am, took Benicar, couldnt sleep any more so got up, was ok, and took increased abx just now.. |
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anne p inactive member
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Dear Barb Wow!!!!!! Congrats on reaching 100mg Mino. Full steam ahead eh I an taking Votum and will soon start the mino. lots of love and hugs Anne xoxoxoxoxoxoxo |
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spacee inactive member
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Hi Barb, my congrat to you too. SOOOO much hard work that you have gone through to get here. Thanks for being such a good Trailblazer for us. My hugs too. Spaceexoxoxox! |
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kathleen Member in Phase 2/3
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Dear Barb, Too excellent!!!!! Getting up to 100 mg of mino is fantastic. I tried 50 (my 4th try) on Friday and will alternate with 25 (tonight) in hopes that I can survive somehow and gradually be able to tolerate 50. I'm almost fainting alot. Now I can't wait to see how long it takes you to get to full mino w/the 2nd abx and then on to the third. I, of course am holding up my end of the line, but never giving up. XXOO Kathleen |
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Aussie Barb Research Team
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Tuesday July 5th 5.45am. off abx day. after dose #1 of increase to mino 100mg. Thank you to Anne, Spacee, Kathleen, and All, re kind messages.. At around 10H I found when I got up from my chair that I was dizzy and had to take great care walking.. and then the dizziness increased and my speech became slurred (like drunk and incapacitated)... was quite funny.. no concerns because I knew it was herx. I took extra Benicar and within minutes I was coming ok.. took Benicar at 4H to go to bed and slept almost 7H and am fine now. the anxiety would be constant without treatment.. so I keep onto that. I have my 2 alarms going. gut inflammation, and cough flare when Benicar is due.. all is well... Fireworks Extravaganza a fitting Celebration... |
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Aussie Barb Research Team
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I realise that I go along every day managing things that I dont actually mention, and it may be a help to others to know. I have constant uncomfortable gut pressure unless I manage it with my meds: and probiotics x 2 per day, milk thistle x 1, and quercetin helps. sleep: sleep has improved to what it was. sometimes I sleep better than others. almost always wake briefly at least after 12mn or 1am, and sometimes still wake and feel the need to get up around 3 am or so.. cough / clearing throat: mostly stays managed with all the meds. wet inside ears: constant. feet puffy. toe: old site of 2 ops.. red. no pain. must be a herx. skin: particularly on legs: sensitive, ouchy under skin. full body pressure / herx constant. body temp is erratic. I am able to manage all with my meds. all is well.. |
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Aussie Barb Research Team
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Wednesday July 6th 6.30am. today abx combo 100mg mino + 3/4 2nd abx @ 48H #2 where did those 2 days go to... I have been very happy to have reached 100.. herx has been bearable yet with all meds. Last night and this morning - nausea, and general hit. recently have had to be increasing NPS (progesterone) to keep on top of the anxiety herx.. this morning a creak and crackling in my neck as I move it.. I was wondering what I was rubbing against.. recently: upper backache.. seems to be more this morning. eyes are more gluggy again.. sleep well between wakes. nausea got me up and attem to distract. |
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Aussie Barb Research Team
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Thursday July 7th 12md. off abx day. after dose #2 of increase to mino 100mg. Full body herx rather than any particular part, continues to wax and wane . tired. popping noise in neck w movement continues. all meds management .. |
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Aussie Barb Research Team
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Big herx in the gut this afternoon, moving to the chest and down left arm. it felt like I had the wind knocked out of me and I was incapacitated for a few hours... have taken Benicar Q4H this afternoon to keep up with it.. and had a rest. NPS helps the anxiety. and all other meds keep all managable all over.. |
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Aussie Barb Research Team
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Friday July 8th 5.20am. today abx combo 100mg mino + 3/4 2nd abx @ 48H #3 The time seems to be flying between abx now.. Mornings, I wake after close to 6H from Benicar, - anxiety and agonising needing meds. Have been having chest pressure from small exertion, or from a change of position to lying down exacerbates it, have to sit up to relieve it.. pulse goes a bit faster then but I cant be bothered counting it. Reality Check: when I was lying on the bed, for some reason I actually tuned in to how I feel.. errrkk... I was wondering if I will be able to remember how awful this feels when I do feel better.. the main thing will be to enjoy the feeling better. I personally have no comprehension past this moment... I think it must be like a survival mechanism. so I dont worry about the future.. one moment at a time.. |
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Aussie Barb Research Team
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Saturday July 9th 7am. off abx day. after dose #3 of increase to mino 100mg. Another big herx hit yesterday afternoon.. a pattern ! Benicar Q4H. all meds on deck.. no pain, just a hit in the guts that disables me for a few hours while it lasts.. my feet: are like chunks of burning charcoal all day. not bad, but difficult to describe the sensation.. aching toes and fingers sometimes.. wet ears.. antbite cramp again. anxiety. |
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Aussie Barb Research Team
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Sunday July 10th 7 am. today abx combo 100mg mino + 3/4 2nd abx @ 48H #4 Big whopper gut herx last night kept me awake.. no pain, is big pressure. took more Beni, MT & Q and finally slept. antbite cramps still around.. less anxiety. clearing throat. wet ears. taking all meds.. |
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Aussie Barb Research Team
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Monday July 11th 8.30am. off abx day. after dose #4 of increase to mino 100mg. herxing steadier yesterday (all is relative) still errrk.. anxiety remains less. still esophageal. gut. taking Benicar Q4H prn for gut inflammation.. and all meds.. |
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Aussie Barb Research Team
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Tuesday July 12th 6.45 am. today abx combo 100mg mino + 3/4 2nd abx @ 48H #5 I have remembered that how my body feels may be described as heavy gravity. hard to do anything that requires moving arms around etc.. and the errk is a sick feeling from the inflammation.. transient bone pains. erratic body temp, hot / cold. feet feel like dry ice.. burning cold as a sensation not really cold.. wet ears. esophageal comes and goes. crackly neck. I had soreness in the Heart area in the afternoon. The big gut herx hit a bit later last night and kept me awake for awhile. it can come up even if it is only 2H from last Benicar, but I still take the extra Beni straight away. It seems to be a band across the diaphagm, and that was a little sore to touch. it takes some time to settle and then I slept for 4H. The diaphragm area is all inflammatory feeling most of the time, is now.. all meds.. |
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Aussie Barb Research Team
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Thursday July 14th 6.25 am. today abx combo 100mg mino + 3/4 2nd abx @ 48H #6 much the same.. the exertion of having a shower still kills me .. more ache in the tailbone again recently, nothing serious... keeping all managed with all meds.. I had a bad leg cramp this morning..still sore.. and news: a change: I am better this morning than I usually am on abx due morning.. |
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Aussie Barb Research Team
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Saturday July 16th 10 am. today abx combo 100mg mino + 3/4 2nd abx @ 48H #7 I am really battling anxiety depressive herx. Keeping all meds chocked in to uphold me ..Benicar Q6H. it may be a sign of time to increase but I thought I had better do this one more abx dose at this level to check it out first ... ~v~v~~ more of feeling cold this time.. Later Edit: the anxiety herx has disappeared since the abx dosing. The abx take me on, ever on. When they get too low for me I get worse and have to accelerate again.. I am happier to be into it than down to it.. |
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Aussie Barb Research Team
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Sunday July 17th 5.35 am. today abx combo / increased FULL 2nd abx + 100mg mino @ 24H #1 slept well for a short while, then no ... Too much battling anxiety herx and cramps. no more waiting, time to increase. Felt fearful to take it.. but tell myself that Aussie Barb says, if the herx is more than you can tolerate, take another dose of mino to slow it ... hmm.. all good.. The anxiety / depressive herx feels so real... but it isnt.. it can be made to lie down by taking the meds... so I hang in by reminding myself and keeping the meds up.. |
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TickTock inactive member
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Hi Barb, What a talented woman. You are able to be your own Aussie Barb!!! We're all so lucky to have her Rock on! TT |
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Aussie Barb Research Team
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Monday July 18th 9.30am. off abx day. after dose #1 of Full abx combo of Modified Phase One Thank You TT ... No major herxing.. just normal full body herxing.. clearing throat. No anxiety or depressive herx. slept well. |
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Aussie Barb Research Team
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Tuesday July 19th 8 am. today took FULL 2nd abx + full 100mg mino @ 48H dose #2 of Full abx combo of Modified Phase One Gut herx was keeping me awake so took extra Benicar and went to sleep and slept well. tired. excited at the thought of moving to next abx soon.. |
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DNStog Moderator
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Hi Barb, Congrats on your continued progress with manageable herx and sound sleeping! Hope you're ~~~~~ (cruising) soon. Hugs, Donna |
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Aussie Barb Research Team
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Wednesday July 20th 6.40am. off abx day. after dose #2 of Full abx combo of Modified Phase One Thank you Donna, and All... Very tired yesterday. dizzy on standing. herxing. anxiety memory herxes needed meds to relieve. patchy sleep. sometimes have to take Benicar sooner. I have the timer set for 6H always, and I take it when the gut starts to flare up, no matter how long it is since the last dose, and reset the timer for 6H from there. Small Things I forget to report but which may help someone else to feel normal: left ear almost constantly wet. eyes sludgey, not real good for seeing clearly. next to no taste. acute sense of smell. numbing of hands. toes mild pain. feel pulse in my lips sometimes and hear it in my ears when lying down.. |
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CLefelt Member in Phase 3
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Barb, Good to read that you're moving on up and have things under control! Carol |
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Aussie Barb Research Team
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Thursday July 21st 6 am. today took FULL 2nd abx + full 100mg mino @ 48H dose #3 of Full abx combo of Modified Phase One Thank You Carol.. General full herx. As the abx concentration drops, the nasty symptoms hit: antbite cramps back in left breast and down left arm. what do they feel like.. like a cramp and the pain feels like a really nasty ant bite over the whole area, incapacitates me.. relieved by heat pack last night. more agonising memory and anxiety thinking type herx.. is very difficult.. I could take the abx sooner but Benicar and NPS and getting up out of bed and distracting myself at computer help me. gut is flaring now.. will take Beni early.. |
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Aussie Barb Research Team
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Friday July 22nd 9 pm. off abx day. after dose #3 of Full abx combo of Modified Phase One Misery herxing is mostly managable with meds until it becomes more difficult and can be miserable from 30H when it takes all meds to hold it down.. It is miserable enough, - that I start to think of taking the abx at 36H to slow it, and then it turned around again.. I choose not to move on to the next phase 2 abx until after Family visiting is over next week.. if necessary I will go to maintenence (more frequent ie ?daily) dosing to take me thru. one day at a time.. I am looking forward to moving forward.. My 1 year Anniversary of becoming a MP.com Member. and mino comm Sept 04. |
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Aussie Barb Research Team
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Saturday July 23rd 6 am. today took FULL 2nd abx + full 100mg mino @ 48H dose #4 of Full abx combo of Modified Phase One esophageal herxing again recently as well.. eyes sludgey blurry. close to cramps.. abx will help that.. misery held down by meds.. occasional transient chills/ shivering.. |
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anne p inactive member
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Congratulations Barb on your MP birthday Hang in there thru these emotional herxes. I am up early because of pain in hips and shoulder blades. Might dose at 25mg today and then 50mg again next time. love and hugs Anne xoxoxoxoxoxoxoxoxoxoxoxoxoxox |
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Dogster Member in Phase 3
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Hi Aussie Barb, always interesting to follow your posts. I've had inflammation/cfs as long as you. What percentage of your symptoms would you say have reversed out? Also, what is a memory herx? I never heard this phrase; must be down under term. Congrats on your anniversary--Dogster |
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Aussie Barb Research Team
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Hi Dogster Thank you .. It is a year since I became a Member here. I have been on the antibiotics for 9 months. and I know that I have / and was diagnosed with, a very high level of inflammation / disease before I heard of MP. you may not have heard of a memory herx because it is a term of my own that suits me to describe ... what is a memory herx? For me it is when I have flashbacks to memories, good and bad.. the bad ones cause me to agonise.. These herxes are managed the same as any other herx by keeping the Benicar and Quercetin up, and as I have an active immune system I keep my antibiotics to QOD dosing schedule to best manage my herx. what % of my symptoms have I reversed out? .. I am actively and happily herxing, so at this point it is difficult for me to tell how much healing has occurred.. I dont need as much sleep / rest. I am calm and content. I am content in knowing that the herxing is proof that healing is occurring.. I am happy that the herxing is managable, - when the disease by itself, or with other treatments, with no MP was not managable, and I know which way my body function was heading then.. and I had tried everything, with no answers available till I found MP and it made sense immediately... I wish you well, all best, Barb .... |
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TickTock inactive member
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Hi Barb, That explanation of the memory herx is EXACTLY what has been troubling me for years and has increased since herxing. I thought it was my inability to emotionally let go of things that negatively impacted my life (even after over 25 years on and off of psychoanalysis). Thank you for telling us about your experience ...it's a light bulb moment for me. Tick Tock |
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Aussie Barb Research Team
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Sunday July 24th 8 am. off abx day. after dose #4 of Full abx combo of Modified Phase One Thank you TT, we never know what we write that may be a help.. I have had a private message from someone not on MP who reads my posts.. concerned about my herxing.. and I thank all and any for their interest. I am managing my herxing so very well with the meds.. The Benicar I take Q6H routinely and sooner if and when required. I have no light exposure at this time so that is not a consideration.. The Quercetin is also a wonder... working synergistically with the Benicar.. bang I can feel the relief.. I have Milk Thistle to help with the gut inflammation / herx that I have.. I have my own Rx Natural Progesterone spray to help me with any extra emotional herx that may appear.. have been needing to use it much more often and it works very well. and if I need more than any of the above, I can take my abx dose more frequently.. all of this works well to keep me functioning at my computer, if not at the kitchen sink.. between rests. I am herxing well.. mostly gut at the moment.. managing well with all meds I may be feeling some brighter.. (still no kitchen sink) all best to all, Barb .... |
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Dr Trevor Marshall Research Team
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TT, Barb, As your long term memory returns you will start to dream again, and many dreams will be flashbacks. I found that childhood and schoolday memories, especially, came flooding back. |
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Frans Member in Phase 2
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Barb, TT, Trevor, Ellen and I are wondering if these memories could be triggered by the herxes recreating symptoms from the past? That way your attention gets drawn to the past. This is a very interesting subject, because I for one have only the slightest memories of the first 6 to 8 years. I was convinced I had suppressed these memories because of the youthproblems that were the basis for my burnout. I know the amygdala play a huge part in these suppression processes, but if this all means that the memories have been suppressed because the amygdala just weren't working proper, I wonder about it's impact. Sincerely, Frans |
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KFaucher Member in Phase 3
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Hey Barb, Full dose of two Abx!!!!! Congratulation!!!! I know some days must have seemed like a lifetime, but you are clearly making progress. Ken "They can conquer who believe they can" Virgil. Roman epic poet (70 BC - 19 BC) |
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Aussie Barb Research Team
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Monday July 25th 4 am. today will take FULL 2nd abx + full 100mg mino @ 48H dose #5 of Full abx combo of Modified Phase One Thank You Trevor and Frans and Ken.. I seem to be herxing more this round.. gut mainly, and feeling brighter at the same time.. some of the disease symptoms that I can think of, that are relieved while I am on MP.> no headaches.. For years I used to have week+ long headaches.. troublesome teeth with fractures / settled... coughing choking / now much relieved and managable with MP meds.. pelvic nerve inflammation managable with MP meds.. some small areas of skin lesions / healed. I may feel a little more refreshed from some night sleep. |
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DNStog Moderator
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Barb, Good to read that you are still able to full dose 2nd abx with tolerable, but naughty herx! Like you, I also find it beneficial to review my sxs improvements since being on the MP. It helps to keep me inspired. Hugs, Donna |
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Aussie Barb Research Team
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Tuesday July 26th 6.45 pm. off abx day. after dose #5 of Full abx combo of Modified Phase One Thank You Donna... Have been tired yesterday and today. We have Family visiting. Herx is kept managed by meds. can feel it more when meds are due. I notice how herxy I am when I try to do any small physical thing/ sob, pulse etcc. keeps me steady.. |
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Aussie Barb Research Team
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Wednesday July 27th 5.40 am. today took FULL 2nd abx + full 100mg mino @ 48H dose #6 of Full abx combo of Modified Phase One The night before the abx are due is still the most difficult to get thru.. to go to sleep is the only way, or take the abx sooner to put me out of my misery, so I go to bed.. Family here for a couple of days.. |
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Aussie Barb Research Team
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Thursday July 28th 6 pm. off abx day. after dose #6 of Full abx combo of Modified Phase One Family still here. This morning I went quickly to 2 shops with Daughters to choose some pretty material to put over my window coverings (that are over the drapes).. I wore my cape... pulled up over my head to travel, - and worn as a Cape proper in store.. and gloves, and covered in shoes, long dress.. and NoIRs.. nobody even seemed to give a second glance.. and I wouldnt worry if they did.... the Girls took care of me and helped guide me in and out. and the material is up and looks nice.. If I want a change later I can just get some different.. there are so many really pretty materials.. I have taken Benicar Q4H.. and I am feeling good so far.. they are going home tomorrow.. |
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Aussie Barb Research Team
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Thursday July 28th 8pm. just took FULL 2nd abx + full 100mg mino @ 38H dose #7 of Full abx combo of Modified Phase One Right Upper Quadrant herx uncomfortable.. extra Benicar Q and MT and herx is still humming ... so have taken the abx combo.. |
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DNStog Moderator
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Barb Great news that you were able to get out for a short shopping trip with your girls and felt good Also glad that today you are still humming with full dose 2nd abx! Hugs, Donna |
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Aussie Barb Research Team
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Friday July 29th 6.30pm. off abx day is 24H since dose #7 of Full abx combo of Modified Phase One.... Thank you Donna... ~~~~ Daughters left today. sad.. Something I never think to report.. Pre MP and happens now, remembered today. After I wake from a sleep in the daytime, I feel to have slept myself into misery, I wake feeling emotionally miserable.. I have taken everything I can take.. probably need to begin Phase 2 abx. I cant begin Phase 2 till 48H after last dose of 2nd abx.. so I may have to take 100mg mino now to get me up out of this and to get me thru another 24H perhaps.. |
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Betsy G Member in Phase 3
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Hi Barb, I hope you are feeling better. Having your girls leave must be hard. I know how I feel when our children leave after a visit! It sounds like you had some good times together and how wonderful that they helped with picking out materials and covering your drapes. You have wonderful daughters Take care, Betsy G |
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Aussie Barb Research Team
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Saturday July 30th 6.45am. is 36H since dose #7 of Full abx combo of Modified Phase One.... Thank you Betsy.... Meds and some food and a nights sleep helped me, without taking any more mino to get thru.. I may need to eat when I wake up.. |
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kathleen Member in Phase 2/3
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Dear Barb, It's so nice to have fresh pretty curtains. And an outing!!! AND to read that you've been able to continue with the full mino and C doses!!!!! Remember your own advice and don't go too fast, but I'm looking forward to your being ready to start Phase 2 abx! Kathleen |
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Aussie Barb Research Team
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Sunday July 31st 4.40am. last night @ 48H took dose #8 of Full abx combo of Modified Phase One.... Thank you Kathleen... I decided that I had better heed my own advice as Kathleen says and take another dose of this combo to wring the last herx out of it before moving on... esp as everything is back to normal now and will be more easily assessed for sure.. Left ear continues wet.. I think I maybe a bit brighter than what I was.. still not active yet though.. looking forward to the move to Phase 2.. YAY!! |
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CLefelt Member in Phase 3
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Lookin' good, Barb. You're a great role model! Carol |
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Aussie Barb Research Team
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Thank you Carol ... I thought I should note here.. about my lungs.. For years, if I laugh or cry, I cough and choke... and now with MP, till the meds and cough drops relieve it.. I have had some lung herx, but there is a way to go yet.. I can feel them all the time.. |
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Aussie Barb Research Team
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Monday August 1st 12.30pm. 40H since dose #8 of Full abx combo of Modified Phase One.... Today is turning out to be a better day.. hopefully ready to begin phase 2 tomorrow morning which will be 60H after the last dose of the abx combo.. I've been able to do a few small jobs.. |
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Aussie Barb Research Team
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Tuesday August 2nd 5 am. 60H since last dose #8 of Full abx combo of Modified Phase One.... PHASE 2 Commenced.. drum roll please..... level .5 / cycle 1 / Day 1 / 50mg mino ... 8am: I can feel the new Boss going around to meet every single invader.. |
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TickTock inactive member
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Congrats Barb...i look forward to following you into battle |
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DNStog Moderator
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Barb, Good 8:00 a.m. analogy in your last post! A new chant for your new abx: Go bugs go, go bugs, go! ...across the floor and out the door! Go bugs, go! Yea Barb! Hugs, Donna (now in the calm before the storm) |
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jsandman001 Member in Phase 2
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CONGRATS !!!!! .............Will you continue to update in the current forum or in the phase II forums?? Hang tough Aussie Barb you are well on your way and you deserve it so much. I am so happy for you. Just make sure you keep us posted ........your story goes out to more people than you know. May you have enough grit to finish the round and achieve more than we all thought was possible just a short time ago.....our health!! James Sanders |
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Aussie Barb Research Team
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Thank You All for Great Support ... I am continuing to report here in my Progress Report. Barb ... |
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Frans Member in Phase 2
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Way to go Barb !!!!!! xoxoxox Frans and Ellen |
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jolbell69 Health Professional
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Go Barb!! WEL DONE!! Jo.xx |
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Jill T inactive member
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Yeah Barb, you did it! You're on your way to getting deep into those pesky areas now!!!!! Soooooooooooooooo happy for you! xoxoxo Jill |
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Aussie Barb Research Team
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Thank You Frans, Jo, Jill and those who have PM'd me... your support is really appreciated.. Wednesday August 3rd 9.40 am. PHASE 2 / level .5 / cycle 1 / Day 2 / no mino day so far... This is different. I am a little brighter. and I have a deep tiredness that is clean not sludgey. |
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Robertrr Member in Phase 3 
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Congratulations Barb! I hope to be there in a 6-8 weeks! Happy Herxing! Robert |
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Aussie Barb Research Team
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Thank you Robert ... Day 1 and a half into first cycle of Phase 2 .... The herx began to rise.. cramps in the gut and the diaphragm all tense and sore to touch, and feeling like a stitch in the right side.. became too uncomfortable, so took Benicar again with relief.. sleep: I need to sleep.. and have a deep sleep... and wake feeling like I never want to get up again.. Before Phase 2, I wouldn't sleep so soundly and was always keen to get up and attem.. different... perhaps more relaxed.. |
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kathleen Member in Phase 2/3
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Dear Barb, It's so great to click on your thread and read about the next stage. I hope that your better days aren't far in the future! Do you think that different herx means that infection in different arwas is being affected? I hope so! Kathleen |
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Aussie Barb Research Team
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Thank you Kathleen.. Thursday August 4th 7 am. PHASE 2 / level .5 / cycle 1 / Day 3 / mino 50mg today QOD First time for herxy painful left shoulder, back ache. took Benicar. and right side and diaphragmatic inflammation.. jaw, ears, ache.. throat, glands sore.. |
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CJ Member in Phase 3
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( In my Best John Mellencamp voice ) Herx so GOOD! Come on Baby - Make it Herx so good!!!!! CJ |
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Aussie Barb Research Team
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Friday August 5th 3.45 am. PHASE 2 / level .5 / cycle 1 / Day 4 / mino is 50mg QOD no mino today / Benicar 20mg Q3H / Quercetin TID Yesterday was a mentally challenging day. Luckily I am able to know it is herx and treat it accordingly which helps.. I found that taking the Benicar in half tablets Q3H was more helpful again now. I had some muscle spasm in my neck.. and anbite cramp again last night.. |
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shegeek Member in Phase 3 
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Hi Barb, Your descriptions of what you're feeling are very evocative. Congrats on being so "in your body," and thanks for helping me be more so. Take care, shegeek  |
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Aussie Barb Research Team
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Thank you Shegeek and Tux .. Saturday August 6th 6.45 am. PHASE 2 / level .5 / cycle 1 / Day 5 / mino is 50mg QOD > today / Benicar 20mg Q3H / Quercetin TID Today is a better day so far..I slept well.. gut herxing. I really think that the first few days I may still have been suffering some of the effects of the last 2nd abx, even though I had stopped it 60H before beginning this one.. the last few days have been difficult. most of the time recently I can feel my pulse in my lips.. |
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Aussie Barb Research Team
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Sunday August 7th 2.30pm. PHASE 2 / level .5 / cycle 1 / Day 6 / mino is 50mg QOD > not today / Benicar 20mg Q3H / Quercetin TID Last evening the full body/heavy gravity herxing. couldnt get to sleep last night. Today is memory flashing herxing of "no no no". also sub conscious 'I dont want to be here or do this" herxing. heavy heart / chest area. chills. tolerable but at times unpleasant. |
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Morris W. Milnes Member 
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Kind of like I'm not looking forward to taking my Z when I get back. It's better in the long run though. Keep pushing on, Morris |
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Betsy G Member in Phase 3
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Good morning Barb, I hope you are feeling a bit better by the time you read this. Your sig line says Phase 2, are you taking M+Z to get the herxing you are having now? Thinking of you and pulling for you Betsy G |
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Lee Member in Phase 3 
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You Go Girl!!! I know what you mean about those "chills" ....kinda nice but weird too ....maybe a "herxchill" ..... Good to know I am in such good company with you and several other re-visiting "Z-Land"!!! This time we will make it through!!! Thanks BarB for ALL that YOU do!!! Lee |
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Aussie Barb Research Team
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Thank You Morris, Betsy, Lee....All in this Community.. Monday August 8th 5.45am. PHASE 2 / level .5 / cycle 1 / Day 7 / mino is 50mg QOD > today / Benicar 20mg Q3H / Quercetin TID Yesterday's memory herxes just come from nowhere, and even though they are not necessarily sad memories.. eg one was just a picture in my mind of a place. Where does the sadness come from, attached to these memories... It is the *alone-ness*, not loneliness.. the alone-ness of having to follow a different road to Family if One is to choose to find One's Health. The alone-ness involved in preserving the little energy One has, to care for Self.. I think daily, of Members of my Family that I would love to call and tell them of my thoughts and love for them, but I do not have the energy required to handle the call, the requirements of so called *well society*.. going to sleep was a pleasant relief to get away from it all.. slept well with a few wake-ups. |
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TickTock inactive member
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Barb, Just wanted to send you a message to say that i support you during these terrible "depression" type herxing. I relate so much and know how frustrated you must feel. I know the heavy weight of such a long time trying to stay positive, and sometimes it's the painful reality that you really are alone that hurts the most about this disease. You've been crucial to my journey especially when i'm down and out. I hope you know that you're not as alone as you think. We're all alone together. I hope this type of herxing will be of short duration. I hear your suffering and I understand. Hang in there Barb, TT |
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anne p inactive member
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Dear Barb I also know just what you are talking about. Our families have no idea how we would be if we were healthy. They and we miss out on so much. For 25 years I have been saying......I'd like to do "this" (phone, visit, write, cook etc) if I were well. It hurts not to be able to show our love in all the ways most people take for granted, and to just partake of normal family life. The knowledge they have that we do love them and want to be with them, must overide all the rest in their minds though. One daughter of mine in her teens suffered dreadfully and became a very wild and alienated child, and I thought I had lost her for ever, but today is a well adjusted married happy person who rings me almost daily. She is coming to visit this weekend. Those feelings and thoughts which we thought we had dealt with over the years, I think come back with the herxing. I get flashbacks frequently (I do anyway, whenever I have a flare of SX). I have to talk reasonably to myself to get through them. It's most unpleasant though I hope this particular type of herxing goes way soon and life is much more enjoyable for you a big long hug and much love Anne xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox |
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Aussie Barb Research Team
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Thank You TickTock, Anne, All .... Tuesday August 9th 5.45am. PHASE 2 / level .5 / cycle 1 / Day 8 / mino is 50mg QOD > not today / Benicar 20mg Q3H / Quercetin TID Yesterday: easy morning after the mino. going into herx in the afternoon and night. some misery that I was able to relieve with the meds, and full body herx. How does it feel? it feels like a pressure coming from the whole inside of me. I can keep it tolerable. I am finding that a lot of things that had no explanation before MP now have an explanation. I am finding that with MP I can call the shots. I have my power back. I can recognise my symptoms as herx and I can adjust my medications to lower the symptoms if I want to. but of course I know I have to herx. Thru my herxes I am learning who I am. It is like standing back and seeing me. I am also learning the truth about how sick I am. (have always been in denial) eg last night I saw an actor in a soapie who was obviously sick by the way he looked and how he was getting around. I could see that he was sick.. and for once, I could see that is how I look. I would say to the Dr, "I feel sick" and he couldnt get past, that feeling *sick* wasnt nausea.. I know now that it is the inflammation in me..., I can really feel it and know it now with herx. I can look back to my symptoms before MP. I couldnt drive for weeks at a time.. I was too weak to get out of the car. Often I could only sit in the car and look out over the ocean. I would do as much as I could whenever I could, but I wasnt *getting* *anywhere*.. So, while the lights have gone off, the lights have gone on too.. I was, am, seriously ill, and before MP, there was nothing I could do about it. Denial has it's uses. The thought of the work that has to be done is daunting... I have begun seeing the reality. One moment , one day at a time has worked while I was in denial, so I will consciously pick it up and use it now. |
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Guss Wilkinson Member in Phase 3 
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Hi Barb You certainly hit the nail on the head - the feeling of taking control of your own recovery remarkably boosts your tollerance for discomfort. If you know that there is a gain to the pain, it is far easier to pile it on. Feeling helpless at the hands of doctors who are fumbling around in the dark can lead to a real downhill slide. My own doctor friend has never been ill in his life and he freely admits that however hard he tries - his ability to empathise resides purely in his immagination. He still believes that the ability to get better is closely linked to how strong your mind is (we all know that that is complete bollocks). My reply to him is that I have a very strong and positive mind, and I am very positive that I am ill!! My advice is to keep yourself occupied (something that you are very obviously good at) - it is amazing how fast time actually goes when you are distracted away from self-pity. Keep up your very good work Barb - you will one day (and not too far away) look back and wonder at how you ever coped. Take care Guss |
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Aussie Barb Research Team
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Thank you Guss.. We are the Strong Ones.. to have done what we have done, and to have survived.. Day 8 today: I had some small almost leg cramps again this morning, which are usually a sign for me that it is time for the abx, and I have a tendency toward a running immune system. my gut herxing continues tolerably today. I may do 8 day cycles, will see how I feel by the morning. |
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DNStog Moderator
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Right on, Barb! Good to read that your herxing is getting less nasty. Okay, you awesome Aussie, if you're willing to do an eight day cycle, I'll be glad to join you. Still cruising ~~~~~ Donna |
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Aussie Barb Research Team
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Thank you Donna ... Wednesday August 10th 6 am. PHASE 2 / level .5 / cycle 2 / Day 1 / mino is 50mg QOD > today / Benicar 20mg Q3H / Quercetin TID I havent previously reported the presence (for years) of skin under my armpits all bumpy, like permanent goose bumps... was reminded by Melinda's report that hers have now gone away. The gut herx waxed and waned yesterday, and the underlying immune system run was there too.. getting uncomfortable.. gut pressure. last night, hot, sweats, BO. so began cycle 2 this am. The memory herx and accompanying misery had lifted yesterday.. good. nice break. In Phase 2, I am quieter in myself. |
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Aussie Barb Research Team
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2.30pm no herxing so far today. a nice break. |
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DNStog Moderator
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Whooopppeee, way to go Barb!!!! You can't see me, but I'm doing cartwheels after hearing of your herx break. Donna @@@@@@@@@@... those were my cartwheels. |
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Arlene inactive member
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Dear Barb, Glad you are getting some relief. Best to you Warrier Princess , Arlene |
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Aussie Barb Research Team
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Thank you Donna, and Arlene .. Thursday August 11th 11 am. PHASE 2 / level .5 / cycle 2 / Day 2 / mino is 50mg QOD > not today / Benicar 20mg Q3H / Quercetin TID Feels totally different now. Having space from a pushing herx has been good. I am feeling quieter. I went out into the world for an hour yesterday with no ill effects.. took the Benicar Q4H for 3 doses. |
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BARNEY Moderator
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AUSSIE BARB, YOU ARE JUST SUCH AN INSPIRIATION AND I AM SO HAPPY FOR YOU THAT THE HERX IS GETTING BETTER. WHAT DID THE WORLD LOOK LIKE TO YOU? SO VERY GREAT THAT YOU FINALLY GOT TO SEE SOMETHING BESIDES YOUR HOUSE. KEEP ON 'TRUCKIN'. HANG IN THERE, WE WILL MAKE IT!!!! BARNEY |
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Aussie Barb Research Team
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Thanks Barney ... What did the World look like? hahaha that is a funny one... it made me think about it.. and the answer is... I was completely covered under my cape, ie I couldn't see out... just got out from under the cover to attend to the appointment, and back under and home.. the lady who attended to me was a very lovely Lady.. so that was a great pleasure... and there was no waiting.. all good. Barb ... |
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CLefelt Member in Phase 3
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Barb, I'm thinking of you and hoping this phase of the herxing will be limited, though it seems productive in that you're coming to terms with issues you've long dealt with. I know your loved ones are great supports, even if they can't fully understand and empathize with your ordeal. We all admire and count on you! You're quite special to us all! Carol |
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kathleen Member in Phase 2/3
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Dear Barb, So exciting - a day without major herx - one of those mythical inbetween days on the new abx. I hope that you have many more of them!!! It's something to look forward to. XXOO no giving up, Kathleen |
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Aussie Barb Research Team
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Thank you Kathleen & Carol ... Friday August 12th 7.45am. PHASE 2 / level .5 / cycle 2 / Day 3 / mino is 50mg QOD > today / Benicar 20mg Q3H / Quercetin TID The gut herx started to build to uncomfortable last night but the Benicar and then sleep kept it tolerable.. woke with a little wheezy cough this morning but the Benicar and then mino sorted that out.. I am not increasing the doses of anything at the moment as it is the meds as they are, - keeping all tolerable from dose to dose, and I am not wanting to push any harder than this at the moment.. I am better emotionally, and needing far less NProgesterone now that I have changed abx. Physically, after any small exertion, I often have to breathe deeply and thru my mouth re chest pressure... that is enough push for me.. I am generally feeling less pushed by the herx/ immune system.. is good. see New Progress Report Aussie Barb Phase 2 |
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ShrnHml Member in Phase 2/3
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Wow! This is a comment on diminished brain power. I don't remember those posts, and I thought I could not access your thread until I was cleared for Ph2. After having been considered "smart" all my life, it's humbling to be dumb. Oh well, roll with the punches. Keep on keepin' on..........Sharon next thread see Aussie Barb |
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aleroh Member
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Oh neat this forum allowed me to put down a post. Could you give us an update on your progress? I know for me it would serve as an encouragement. I private messaged you, but I was not sure how that works and if you would definitely get it. Thanks. AB note: see my current progress report.. sent by pm. Last edited on Sat Feb 24th, 2007 23:49 by |
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