The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Aunt Diana Alumni updates
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The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Aunt Diana Alumni updates |
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Aunt Diana Moderator 
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My first dose (25mg) was on Sunday eve. Monday eve, like clockwork, I got hit with a terrible herx....it was stronger than I expected it would be and had me pretty miserable for several hours. Symptoms: Severe headache, back of neck, upper shoulders....then it worked it's way to my entire body.....pounding, pounding...I felt like I had the "bends". Nothing seemed to "touch" it,for an hour or two. Then, it gradually subsided. I also seem to get very cold....the only thing that warms me up is a strong fire or soaking in hot water. Also had strong emotional and fearful response, very teary. Figured the only thing to do was to try to sleep it off....which definitely helped. My eyes are sticky and burning today. My upper back is tight and sore, plan to stay in bed most of today, I feel pretty exhausted but I'm glad the pain has lifted. I figure I need to experience a few of these cycles before I understand how "intolerable" they are. At least I have not had cardiac herx. In my past experience with other antibiotics, the herxes didn't seem so extreme, but they lasted for days and were pretty miserable in their own right. Also, I may be forgetting just how bad they were come to think of it. Thanks for all the support you've provided....it makes it a lot easier when you've got an idea of what to expect. |
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Aussie Barb Research Team 
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Diana Welcome to the Full Protocol Forum.. when you get hit by a hard herx like that, varying your Benicar dose will often help you thru it if need be.. Do not hesitate to use any of the meds adjustments options in My Herxheimer reaction is too strong. What should I do? If you are concerned do not hesitate to contact your Dr.. you are right that experiencing the herxing and adjusting the meds to explore cause and effect is all good experience... The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule combined with the Essential aspects of diligently avoiding Light and vitamin D.. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you. all best, Barb .... |
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Aunt Diana Moderator
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Hi Aussie Barb & thanks for your reply. I have been pretty much "down for the count" for the last two days, so I haven't been on the computer much and didn't have the energy to post. I slept a lot yesterday...got up around 3p.m. but wasn't good for much. Very lethargic, a bit teary, but as the day progressed I felt better. Went back to bed @ 7 slept a few hours and woke up in pain. All muscles and joints aching, my head throbbing felt very cold I sat in front of a fire (thank God for my husband....I would not want to have to go through this alone) for a few hours and watched some brainless TV. By the time I went to bed the pain had subsided This is much more intense than I thought it would be.....I don't know what made me think it would be easy... I guess my theory that I've killed a lot of the bacteria over the past years because of all the antibiotics I've taken just doesn't fly. This morning when I woke up was totally confused about my benicar dosing. I couldn't remember if had woken at 4 or not, so I took one immediately and started feeling better. (I have a pill box with all the times and dates...but even that was confusing) Maybe I'm starting to get the hang of it. Now I;m wondering what I should do because I have an important appt. on Friday @3. I guess it's too soon to know how to manage that. Any ideas? Again thank you for your support. |
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Aussie Barb Research Team
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Diana Thank you for posting.. is good you have the pill container.. and that the Benicar could help you.. please understand that the aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule combined with the Essential aspects of diligently avoiding Light and vitamin D.. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you. Do not hesitate to use any of the meds adjustments options in My Herxheimer reaction is too strong. What should I do? .If you are concerned do not hesitate to contact your Dr.. see also PAIN CONTROL when you have an appointment. Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal.. see also some important tips in Going to an Appointment. If necessary, you may also wish to take more frequent mino just for that short while to dampen the herx for your comfort and convenience.. some may be able to stop the antibiotics to have a break from herx but, from your description it doesnt sound like you are one who can.. Let us know if you have any questions. all best, Barb ... |
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Aunt Diana Moderator
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I took my 3rd dosage of mino (25mg) yesterday and am feeling pretty good today...no herxing to speak of, although my back itches like crazy and feels inflamed....I don't know if that's a herx. My head is clear and I've taken advantage of the cloudy rainy day by getting out of the house...hooray...it felt great. (I covered up and wore my noirs, but just getting out in the fresh air and interacting with some people was wonderful) My first dose of mino had me herxing immediately. Maybe there is a herx waiting to hit? If so I'm prepared with my benicar and addition mino if needed. If I continue to feel this well I'd like to ramp up to 50mg on Wed 21st....with Christmas coming do you think this is okay or should I wait til after the holiday? I'll be having my family for Christmas dinner at my house. Thank you in advance for any advice. javascript:emoticon('  ',%20'images/emoticons/smile.gif') |
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Aussie Barb Research Team
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Thanks Diana re "Last night I thought I would scream, my back itched so much. also my ribcage. I keep asking my husband to put cream on and if it looks like the skin is inflamed....he asssures me it is not inflamed. It feels from the inside like it would be millions of little red bumps. I even think I can feel the roughness with my fingers...but it's not there for anyone else to see. It is maddening but I guess it's a herx symptom." it doesnt sound like it is time to increase mino yet.. there is no way of hurrying the MP without running into trouble.. see the FAQ I'm eager to get well. How can I speed up my progress on the MP? and I've developed a rash. What should I do? for helpful tips (even though the rash is invisible, the tips all apply).. all best, Barb ... |
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Aunt Diana Moderator
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Thanks for the timely response. |
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Aunt Diana Moderator
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Hello again, As anticipated the first day after taking mino is better....the 2nd day seems to be neuro herx this time around. All tolerable...just grouchy and irritable with cotton candy in my head and a slight headache. Since I'v been taking the mino I've had two nights that I stayed up til 3a.m. working on projects, this is so unlike the Diana that usually is in bed by 10pm that I can't believe it. It seems to be the only time I get anything done. When I finally get to bed I sleep intermittently til 11 a.m. and feel groggy & weird the next day. Today is one of those days. I hope I can make it to the post office to mail some packages before they close....if I can get that done I'll feel I've accomplished something. That's all for now. |
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Aunt Diana Moderator
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Before the MP, I had tried another protocol that may have helped somewhat. That doctor took many blood vials for lots of tests....the last result has just come in and I wondered if someone could help me understand it. (He is very busy and it may be a while before I could talk with him....but his notation on the lab result is "C4a is a major problem. This test was done back in May 2005 C4a --------------3860 ng/mL ............his notation is (<757) C3a Level by Elisa--------326 ng/ml........ """"" "" (<357) Does anyone know what this means? I'm going to my MP doctor's office tomorrow....for some blood work. Should I have them do this test again? Thank you in advance for any information you can shed on this |
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Foundation Staff . 
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Diana, This article explains that Complement C3a and C34 assay are sometimes used to measure inflammatory activity. Your doctor is the best person to assess these tests for you but it would appear that the most potent, C3a is within the lab reference range and that the less potent, C4a, is elevated. ELISA is the brand of kit used for these assays. Best, Meg |
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Aunt Diana Moderator
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Went to the doc for blood work today....asked him about the c3a and c4a tests....he said they indicated inflammation.. Well I guess that's pretty apparent. I took everyone's advice on the "itch" and want to thank everyone....the bendadryl cream works very well. Today is day 1 of a mino dosing and I'm not doing too badly. Went to doctor and ran some errands. Got my new prescription sunglasses that will work for me inside....from Zeiss....they are not cheap but convenient. My herx today is achy and moody and quite intolerant. This too will come to pass. |
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Aunt Diana Moderator
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Things are going well. I've been mildly herxing. I have also been out and about doing Christmas things....I wait til dusk before I venture forth but I find the oncoming car headlights are horrible. These new halogen headlights should be outlawed IMO. Even though I wear my noirs, sometimes I wear 2 pairs) I wonder if those lights are bringing on some of this headache I've had for a few days. Two days ago when it felt as if the headache was going to build into something pretty nasty I experimented with mino....took 25 mg and felt relief almost immediately Armed with that information and with the willingness to experiment a bit more with the benicar as well I'm hoping to make it through the holidays fairly well. I would like to take this time to thank Trevor Marshall, Aussie Barb, Meg Rangin and all the others who make this journey possible.....And to wish everyone a very merry Christmas and happy holidays, and a healthy and happy New Year. |
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Aussie Barb Research Team
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Thanks very much Diana, re the lights: Dr Marshall says, "I used to make sure that I was never more than 4 hours from my last Benicar whenever I had to go outdoors. Then, after the exposure, I needed to keep the 4 hour going for 12 hours after the final exposure. Beyond that I could slip back to normal dosing, as the 1,25-D had dissipated .... << to help keep symptoms minimal.. The Benicar will also help.. and if you need tylenol, can be used also.. see Why is my 'herx' more intense after exposure to Light & / or Vitamin D? Phase One is a good time to be learning the effects of adjusting your meds to achieve tolerable symptoms... all good.. all best, Barb ... |
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Aunt Diana Moderator
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Thank God things are back to normal and I can resume my normal(?) routine. Yesterday I spent most of the day in bed sleeping, very achy and exhausted from holidays....I was pretty well covered up and wore my noirs but don't really know about the food at one party I attended. I asked questions and steered away from what I knew would be high in Vit. D so I'm not sure if my herxing is due to a true herx or to going offf the regimen. I decided to try the mino dosing Q12hrs (25mg) and benicar Q4 (40mg) and it seemed to help relieve the symptoms. I took my last mino this eve. and now wonder how to get back to my regular shedule. Do I just play it by ear? I've been pretty discouraged and teary today..it seems to be pretty daunting and I've just started. I'm sure this is just emotional herxing and will pass. But all I can say is I HATE this @#@#!!!! disease. I just want to get back to the energetic and funloving person I used to be. I guess that's what we all want ....at least there's some hope for it now. I'm up now at 2a.m. because I slept so much today. I'm having a hot toddy hoping it will put me back to sleep. Good night all. |
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Aunt Diana Moderator
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I forgot to mention how much my eyes are bothering me....I assume that's herx but is it also due to being in undarkened rooms....I had my noirs on most of the time..but for two days now they sticky, grainy and hard to use. I keep using the refresh tears but they don't really help much. Any words to the wise? |
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Aussie Barb Research Team
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Diana It may take a couple of days to get back in balance from all the changes.. when you feel a change in the symptoms, for some it may be feeling more stable and for some it is a change for worse.. for guidance see the FAQ My Herxheimer reaction is too strong. What should I do? warm or cool or wet compresses.. and rest... may also help your eyes while you are waiting for things to come back to normal.. Posting an Index of your schedule and dosing at the top of your post is a helpful quick glance guide back to Staff for replying and for other Members for reading and understanding .. thank you.. all best, Barb ... |
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Aunt Diana Moderator
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Currently on 40mg Ben. Q6hr, 25 mg. mino Q48hrs. I forgot to mention that my vitamin D level is now 16, according to my doctors most recent blood test. In October it had been 21. They forgot to test the Vit.D. I,25 but will do so in a week. I think this is good news, yes? |
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Aussie Barb Research Team
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Diana Your 25D is dropping as expected when avoiding D.. good news. see FAQ How often should I test D levels? What are the target numbers? all best, Barb ... |
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jillian Member in Phase 2 
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Diana, Re dry eyes and eye drops... I found the artifical tears were not working well enough for me, had to use them at least once an hour. I got the lubricating drops and they're working much better (Walmart's Equate "Gentle Lubricant Eye Drops" about $6 for a 1 oz bottle). My eyes ARE herxing less these past ten days or so, but the drops are wonderful for me. 'til later, Jillian from North Dakota |
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Aunt Diana Moderator
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Thanks Jillian, I'll go out and get some today....I mean tonight. |
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Aussie Barb Research Team
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Thank you Jillian Your drops have been added in this thread EYE INFLAMMATION and Th1 diseases: which may have further helpful info.. all best, Barb ... |
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DNStog Moderator 
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There's also a fairly new night time product for soothing dry eyes. I do not recall the original manufacture, but CVS has duplicated the formula. It is actually an ointment developed for dry eyes that bathes the eyes all night...much thicker and longer lasting than the gel drops. The ointment causes blurry vision which is why it was developed for night time use. Works great! Donna, Phase III still cruising ~~~~  |
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Aunt Diana Moderator
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Thanks DNStog for the info on the ointment....I'll try some tonight. Meanwhile, I am a bit confused about dosing the mino. Can someone please clarify....I am taking 25mg every 48 hours, and 40 mg benicar every six hours. Over the holidays I took additional mino, 25 mg. every 12 hours to help with a bad herx...so I could be with my family, it did help a lot, almost immediate relief. I did that three times. . Then, last night my herx started to get pretty bad so I tried benicar 40mg Q4hrs and found that this helped, although not as quickly but definitely helped as well. Today I am going to try to extend my mino dosing to the 3rd day and see what happens. Now that I am learning how to minimize the bad herxes my question is what is least likely to interfere with the action of the antibiotics. I want to kill these bugs as fast as I can. So which of the above is best for the action of the mino. Also, when do I know when to go to 50mg. mino? I want to do what is least likely to interfere with the protocol. thank you in advance for any clarification of this. |
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Aunt Diana Moderator
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Thanks DNStog for the info on the ointment....I'll try some tonight. Meanwhile, I am a bit confused about dosing the mino. Can someone please clarify....I am taking 25mg every 48 hours, and 40 mg benicar every six hours. Over the holidays I took additional mino, 25 mg. every 12 hours to help with some bad herxing...so I could be with my family. I wassurprised at how quickly it helped , almost immediate relief. I did that three times. . Then, last night my herx started to get pretty bad but I thought I'd try another route just to see what happened. I changed the benicar 40mg to Q4hrs and found that this helped, although not as quickly but definitely helped as well, and I felt much better within a half hour. Today I am going to try to extend my mino dosing to the 3rd day and see what happens. Now that I am learning how to minimize the bad herxes my question is what is least likely to interfere with the action of the antibiotics. I want to kill these bugs as fast as I can. So which of the above is best for the action of the mino. Also, when do I know when to go to 50mg. mino? I want to do what is least likely to interfere with the protocol. thank you in advance for any clarification of this. |
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Aussie Barb Research Team
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Diana The best action for the mino is the dose and schedule which achieves tolerable herxing for you. The Phase One doc is your first guideline.. some have it printed to check with regularly. and here is further info that may be helpful.. I'm eager to get well. How can I speed up my progress on the MP? This is not about pushing the herx to see how long you can go.. it is about using the schedule where all remains tolerable to be most kind to your self.. to explore the options that are recommended to help you achieve tolerable herxing see the precautions and do not hesitate to use any of the adjustments in this FAQ My Herxheimer reaction is too strong. What should I do? 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." I hope this helps. Barb ... |
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Aunt Diana Moderator
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Happy New Year to all....I hope 2006 brings health to all MP members. Today is day 41 (benicar 40mg/Q6hr) and day 22 (mino 25mg/Q48) For several days after the Christmas holiday, I felt horrible. Seemed to have a 4-5 day herx. Symptoms were achiness, exhaustion, headaches, painful and irritated eyes, heaviness in legs and arms.....I moved as if I were a 90 year old person. Also I was so irritable and quick tempered and teary I embarass myself.....my poor husband...I have been awful to live with. Two or three times I took an additional 25mg mino and was amazed at how quickly that seemed to help. Then I adjusted the benicar to every 4 hours for a day or so and that seemed to help as well. So I think I'm starting to understand how the meds affect the herx. Now I'm back to the normal dosing and have been feeling pretty good for a few days. I actually felt well enough to complete a project I'd started a few weeks ago.....I can work with my eyes again. Hallelujah!! I'm planning to work a bit more today and that feels really good. Just as an aside, I have come to the conclusion it simply doesn't pay to go out in the light. Every time I have, totally armed with noirs, hat, scarf and keto cream I have still paid the consequences. Mostly with my eyes. Therefore I'm trying to sleep in the day and I'm awake at night. The only time I seem to be able to go out for errands is about a two hour window right around dusk...before it gets too dark...the car headlights in the dark are more irritating to my eyes even with the noirs, than the daylight. Since I have been feeling so well now for three days I thought I might try to ramp up to 50mg mino tomorrow...I take my dose in the evening so that would be four days without a herx. Is that pushing it? Any ideas or comments would be appreciated. |
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Aussie Barb Research Team
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Thank You Diana Posting your index and details clearly is helpful.. and your light observations.. as per the Phase One doc you have stayed at this level till you are now able to tolerate some more herx ... and you are learning about cause and effect of the light and the meds.. all good experience to take you forward.. all best, Barb ... |
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Aunt Diana Moderator
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On Monday (day 42 benicar, 40mg@6hr, day 23 mino, 25 mg @48hrs) I upped my dose to 50mg mino.......hadn't had herx for several days and felt ready to ramp up. I'm glad I did - herx came back but tolerable. Mostly all over achiness but Advil can help with that. My mood is better (that can change at any minute, I am sure, but for now it is pretty good). My legs and arms are heavy feeling and I feel like I'm 100 yrs old, but that waxes and wanes and I'm used to that feeling by now. At least I know I'm killing the enemy. My eyes are also feeling much better....not needing eye drops as frequently, no grittiness, no pain....I've been able to read a bit and do some sewing...which feels great. I bought myself some games and puzzles (one 1,000 piece jigsaw puzzle that I know will drive me insane) to help pass the time. I do get saturated with the TV Although my social life has evaporated.....very few people go to sleep at 5a.m. and wake up at 3p.m, I still can talk to friends of the phone and live vicariously through their adventures. I must admit I am praying that I'll be one of those lucky people who start to get more light tolerant at 6 mo. I am an artist and I miss the colors of the great outdoors. Sometimes, I'll don my darkest noirs, put on a ski mask, and all the other accoutrement and frolic in the back yard just to be out there and it feels great. But you will not catch me outdoors for any lenghth of time during the day.....I pay too high a price for that physically. that's all for now. Happy herxing |
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Aunt Diana Moderator
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Third day on 50mg, mino Q48; benicar remains same 40mgQ6 I think I understand what Aussie Barb means by "subcutaneous ouch"...have experienced it now each time I take the mino at this dosage. In my own words, I visualize spiderman with all those lines he has, and imagine each one of them hurts, just under the skin. It feels like a battle wages on in my body just below the surface. My herxes seem to set in within an hour or so of my dose and definitely get less as time goes on. Advil relieves the ouch within 20 minutes or so....sometimes 3 will do it, sometimes I need 4. It can get so bad, however, that if I'm lying in bed it can take me quite a while before I get up the steam to want to move in order to reach the advil. These are also the times I get pretty grouchy and very impatient. I also have a constant state of sniffles and sneezing...I'm buying kleenex like it was going out of style. Today, I slept the entire day....just got up at 7p.m. but feel quite rested. a-a-choo. My eyes are 100% better by the way, only need to use drops very occasionally. I think that's directly due to strict obeyance of the light avoidance. that's all my news for today. Oh, on another note, afriend of mine inadvertantly deleted all me e-mail so if anyone has emailed me and hasn't gotten a response, I apologize, but please try again. (I started receiving again at 5:00 pm yesterday) |
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Aunt Diana Moderator
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From the moment I get up lately I start s;niffling and sneezing. I must sneeze 10 times a minute. Other than that I don't have any other cold symptoms....but my nose is getting sore and I am going through kleenex by the boxloads Any suggestions out there? thank you in advance |
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Julia Member in Phase 3 
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Hi Diana, Probably herx! Sneezles and snuffles are a regular feature of my herxing just now, but they don't usually last more than an hour or so at most. Reminds of the hay fever I used to have for three months every summer... pre MP  . My DH used to say he was buying shares in Kleenex. No need now. JuliaPS Vaseline is good for a sore nose. |
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Aussie Barb Research Team
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Diana I have joined this into your progress report. To come to your own post each time you log in... go to the my account button up the top. and the link will be there.. Symptoms of cold are often due to Th1 inflammation and the Herxheimer reaction. you may like to check thru the points here one at a time to see if any of them are helpful to you.. My Herxheimer reaction is too strong. What should I do? see also under C for colds in the ABC of MP... scroll down to the 2nd post. If you need temporary relief of your symptoms contact your doctor or pharmacist for advice about palliative medications. Any medications that are not on the list of MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL are okay to take to relieve intolerable symptoms. Others may also have suggestions for you.. all best, Barb ... |
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DNStog Moderator
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Hi Diana, Nasal herx symptoms hit me at 75mg Mino in Phase I as flu type symptoms, stayed with me through most of Phase II as "cold type" symptoms in the form of runny nose. Phase III alternates between runny nose, stuffy nose, normal nose daily and every few days or so sneezing attacks lasting for an hour or so. I do take OTC Loritab, a non drowsey antihistimine, once daily and Benedryl as a back-up occasionally. This has worked for me. For my sore nose, I use pure Lanolin to relieve the chapped skin and vasoline inside applied with a que-tip. These are ways I dealt with seasonal allergy problems most of my life. May your herxes be gentle and your healing quick in 2006. Oops, did I just make a rhyme? Donna, still cruising ~~~~~ |
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edj2001 Moderator 
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Hi Julia, In my years of research trying to find information on sarcidosis, i stumbled across a report that indicated Vaseline fumes should not be allowed in to the lungs. I think it is the petroleum base that is the problem. I just mention this to see if anyone else has information. Gene Julia wrote:
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Aunt Diana Moderator
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Day 29 on Mino, 50 mg q48hrs, benicar day 48, 40mg Q6hrs Feel pretty good today but the sneezing really got to me on Sunday. I sneezed constantly all day until I started having a back spasm, not to mention a sore nose. I took the advice of several MPers and got some vaseline for my nose and took a benedryl. This is where it gets good....the benedryl stopped the sneezing and the runny nose.....hallelujah...but I fell asleep at 6p.m. ( Ithink I was simply exhausted from all the sneezing)...i woke up at 9pm...stayed up for about an hour, went back to bed and didn't wake up until 3PM the next day. (except when the alarm went off to take my benicar.) I slept 14 hours. I guess I needed it My nose is running again today and I'm starting to sneeze again but I don't think it's quite as intense as the other day. I aso realized today that I haven't had a particular sensation that I used to get quite regularly in my head....sort of like it had cotton candy up there....it was an awful feeling....I think it might be gone....because I don't remember ever going for more than a few days without it. Interestingly in the early days of mino, my bad headaches were in that same area of my head. Maybe the bugs up there are gone. I hope so. another hallelujah. that's all the news from me at this point. I'm glad we finally got my avatar up there. |
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Aunt Diana Moderator
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52nd day on full MP. 40mg benicarQ6hrs, 50mg mino q48hr. The last few days have been uneventful, although I have been very tired and have been sleeping a lot. Just generally "off my feed". I attribute this to herxing. The sneezing finally stopped....I think benadryl helped immensely. I notice I'm not very hungry...tend to want to eat fruit and non fat yogurt or ricotta cheese. Drink seltzer or grapefruit juice. (I am usually a person who lives to eat so this is quite different.) My arms and legs are heavy and somewhat achy, and stiff. My eyes are much better....think the drops help as well as compresses when they get really bad. Don't feel too motivated to do much but thought I should post to let others see what it can be like. This is all very tolerable. Am contemplating upping the mino next week if I stay in this condition. I talked my husband into having his Vit D tested so we should be getting those results next week....I have long suspected he has something similar to me. He doesn't agree but maybe the tests will tell us, he has something wrong with him and no one has ever been able to explain it other than depression. We will see. |
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Aunt Diana Moderator
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Took my 50mg mino last night and almost immediately got exhausted and went to bed. was really wiped out. Slept til my alarm went off for next benicar dose....got up for a while and went back to sleep. I am really sleeping a lot. But this morning an amazing thing dawned on me. I am able to fall asleep without sleep meds....I haven't done that in 40 years. And now that I think of it....that's been true for a week or more...I just hadn't thought of it. ALso, the weird cotton candy feeling I used to get in my head every few days has disappeared....knock on wood. I hated that feeling and it would appear fairly regularly. I think things are starting to change for me. Needless to say, that makes this protocol and the herxing a lot easier to take. I am feeling very optimistic. |
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Alayne Member in Phase 3 
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Oh Diana, that's amazing you're falling asleep w/o meds! I pray for the day that happens to me, so you've given me even greater hope. BTW, know that cotton candy in the head feeling quite well. I just called it cotton-filled head. Cheers! Alayne |
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Aussie Barb Research Team
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Diana re the post at Sharon.. se FAQ My Herxheimer reaction is too strong. What should I do? .. Do not hesitate to use any of the meds adjustments. Check these options one at a time to assess and adjust your own situation. If you are concerned do not hesitate to contact your Dr. anytime you are looking for info.. you can click on the ABC in my sig line and find the info alphabetised. or if you ask, we are happy to assist you any time.. all best, Barb ... |
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Aunt Diana Moderator
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Saw my doctor yesterday and he suggested I take 500mg of MSM 3x day for aches and pains, The name on the package is Fundamental Sulfur and the ingredients listed are Vit.C 100 mg., molebdenum 25mg., methylsulfonymethane 500. m.g. I don't see it listed anywhere in the supplements to avoid list. I remember taking this years ago and it did seem to help. Anyone know anything about it? also, my Vit. D is now at 15 from 16 a month ago. He also wants to retest my angiotensin converting enzyme....It was 42 on Dec. 27. and is at 36 this last visit. Is this of any signigicance? thank you for any information you can provide As for my symptoms....mostly stiffness and achiness, sinus drainage and sneezing, sleeping a lot...I plan to up my mino to 75mg after this weekend....I want to be able to babysit my nieces over the weekend so don't want to change anything at the moment..but I believe my herxing is pretty minimal right now. I do continue to have "hot periods" and cold periods several times during the night especially but these just seem to be part of the whole thing. Thanks again for any light you can shed on my questions. |
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Aussie Barb Research Team
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Diana There is information here which describes the supplement as "MSM helps maintain normal immune response" << the FAQ Why do I have to stop taking supplements? says in part: Unnecessary supplementation is to be avoided because we do not know how these supplements interact with the medications on the Marshall Protocol or how they might affect the immune system. ..... You may take supplements ordered by your doctor that treat a documented or suspected deficiency or that relieve a symptom. << so it is between yourself and your Dr to make the choice. The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines and combined with the Essential aspects of diligently avoiding Light and vitamin D...Phase one is the training ground for gaining experience.. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you. My Herxheimer reaction is too strong. What should I do? .. Do not hesitate to use any of the meds adjustments. Check these options one at a time to assess and adjust your own situation. see PAIN CONTROL re ACE see Why has my ACE gone up since I started the MP? all best, Barb ... |
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Aunt Diana Moderator
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I wanted to post my progress and am not sure where to do it now. Help!! thank you. |
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Aussie Barb Research Team
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Diana Thank you for asking.. I have merged your post into your report. To get to your own post each time you log in... go to the my account button up the top. and the link will be there.. thank you.. all best, Barb ... |
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Aunt Diana Moderator
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Hello everyone, It's been a while since I've posted my progress on MP so here goes. I ramped up to 75mg mino Q48hrs., benicar 40mg Q8hrs. Today was my second dose at 75...so far so good. I had some mild herxing yesterday,(achiness, stiffness, sneezing and sinus drainage, then a back ache that seems to be recurring toward the tail end of each mino cycle)...went to bed early (8pm) slept lightly, woke up with my 2a.m. benicar dose and couldn't fall back asleep...so I read for a few hours, went back to bed and dropped right off and slept til 1p.m. (Can't remember taking my 8am dose of benicar but I must have cause it wasn't there and the alarm was set for the next dose at 2pm) I'm having very good sleeps now....deep and refreshing, dreaming all the time...some good dreams some bad but all the time. And, for the most part, having no problem falling back asleep.....(which used to be impossible for me) My brain seems clearer and overall I am feeling much less anxious and much less depressed, although I do get teary very easily. (Anxiety and depression have been my middle name for 40 years). I've gotten accustomed to my "cave" and rather like it....I'm glad it's winter however....when spring comes around I may feel differently but I'm hoping I'll be one of the lucky ones who can stand more light at the 6 month mark. No matter what, I am committed to stick with this til I'm "cured". I was in a local shop the other day, and overheard the owner talking about having problems with his eyes....he said he had something itis....his friend said "conjunctivitis?" and he said no....some other itis. I asked him could it be "uveitis" and he said "yeah, that's it". So I told him I had a website for him to look at. Meanwhile he said a friend of his said he thought he may have Lyme Disease....at which point I spoke for a few minutes about my own experiences, TH1 inflammatory diseaseses, and of my overall opinion of the "medical establishment" which left both men rather speechless. But by that time I think I had gotten his attention....I hope you hear from him, but his parting words...."but I love the light"....my question is ( who doesn't?) until you begin to see the "cause and effect." |
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Aunt Diana Moderator
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This is an interesting and sometimes disturbing trip. I think the 75mg mino dose has been pretty difficult herxwise. My mood has been horrible, my energy has disappeared, my sneezing and sinus drainage has increased....but I'm not as achy as before. Just B==chy, it you know what I mean. A friend dropped in yesterday, and I was so happy to have someone get my mind off of myself, I enjoyed her company immensely, but within an hour was reeling from the energy expenditure of simply listening to her entertaining stories. I have accepted the fact that I am best left alone for now. No matter how much I miss the fun of being around my friends and nieces, etc. it's just too impossible....too draining. then I get feeling very sorry for myself and go into an "I hate me" campaign. (and hate everyone around me--which only makes me feel worse and more Hate-able), Then I worry about losing my friends....what must they think....most of them really don't understand and dont really want to hear about it anymore. Even though it's probably the most important thing happening in my life I can't share it with anyone. Woe is me. So I guess this is what you call a neuro herx. It's tough stuff. I feel like I'm hanging by a thread to whatever positive thing I can come up with in my brain. Cleaning my room, taking a bath, making a list.....anything that seems positive. I do have a question about muscle tone. I would really enjoy hearing of others experiences of this improving. Right now I feel so weak and so incapable of really exercising....it has always proven to be counter-productive since I've had this illness...but meanwhile, I feel like I'm getting weaker and weaker and less capable of exercising. Is there a point where you should just push harder and try more...or is resting better? I'm sure there is no one answer but I'd like to hear others stories about this. I hate the feeling of "giving in" to laziness. thanks for listening....I'm sorry I'm such a downer right now. |
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Aussie Barb Research Team
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Diana adjusting your meds can make all the difference.. The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines and combined with the Essential aspects of diligently avoiding Light and vitamin D... Taking your Benicar more often may help you... or Taking your mino dose daily instead of QOD till you stabilise.. Your body is working at full capacity to do the healing, and you can adjust the meds to take the pressure off some.. Do not hesitate to use any of the meds adjustments in My Herxheimer reaction is too strong. What should I do? .. Check these options one at a time to assess and adjust your own situation. << if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.Tools to check: What is a neuro Herx? If you are concerned do not hesitate to contact your Dr. Are there any Guidelines on Exercise & the Marshall Protocol? GUIDELINES FOR EXERCISE all best, Barb ... |
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Aunt Diana Moderator
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Once again, thank you, Aussie Barb, for your prompt and informative response. It is always so comforting to hear from you. I have adjusted the benicar to 40mgQ4hr. I think it is helping...I don't seem as depressed at all today and actually feel pretty good. The sneezing has seemed to have tapered off, I take benadryl if it gets bad, but I am having constant sinus drainage. What do you think that is? Is it the beasties clearing out of my head? My other symptoms all seem to have levelled off. I'm not particularly achy, my head feels clear, I am still stiff and awkward but I think that's going to be there for quite a while, no matter what dose I'm on. I'm sleeping easily and getting lots of it...refreshing sleep. I'm nowhere near as fatigued as I used to be. I have a few projects that I would like to get started so at least my brain is working that much. I just need to get one thing in order to proceed and that will have to wait til Monday. So, believe it or not, I am thinking of going to 100mg for my next dose. I have been at 75 for 5 doses. I believe I can tolerate the next level. Do you have any opinions or suggestions. |
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Aussie Barb Research Team
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Thanks Diana Please do not increase the dose while you are requiring Benicar Q4H at this dose level.. an increase would be due if you were stable and tolerable on Q6H Benicar and the present dose level at QOD and ready to take more herx... see I'm eager to get well. How can I speed up my progress on the MP? for more detail. re herx symptoms: see HERXHEIMER REACTION we are happy to assist you in any way we can.. all best, Barb ... |
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Aunt Diana Moderator
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Okay...I'll hold off...thanks for the advice. |
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Aunt Diana Moderator
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Hello all, I am on my 6th dose of 75mg mino and am feeling much better. Sneezing has stopped, I'm sleeping well (and a lot), still using sleep meds however, no aches and pains, no brain fog....in a very good and positive mood. I'm actually planning things, talking and laughing for a change. I think I've stopped herxing but don't know how long that should go on. (not herxing) I'm considering upping my dose tomorrow to 100 but want a reality check. Thank you in advance. I do love feeling good, but I want to kill these damn bugs as fast as I can. |
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Aussie Barb Research Team
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Diana if you are happy to increase according to your herx being comfortable enough to take more as per Phase One Guideline is fine. see I'm eager to get well. How can I speed up my progress on the MP? for more detail. all best, Barb ... |
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Aunt Diana Moderator
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I think I spoke a bit too soon. Today, from the offstart, early a.m. everything seemed a bit "off". I couldn't fall back to sleep, although I had gone to bed very late...wee hrs. of a.m. ...just felt off. I did shower and dress and by the time I got downstairs realized I was herxing really bad. Achy is an understatement....all bones ache and could barely make it up the stairs, legs were so heavy, as well as arms. Fell back into bed and slept a few hours. This is a strong herx so I decided not to up my dosing but to rather try the 25mg mino Q4hr. It helped for two hours. Now I'm real achy again and don't know if I can stay awake long enough for the next dose. My alarm is limited to one setting so it's getting to be complicated. HELP...what should I do? any advice. My next benicar dose (dosing at @6hrs) is due at 1:00a.m....I suppose I could forward that by 2 hours and take the 25mg. mino and benicar at same time. Does this make sense. Thanks for your help. |
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Aussie Barb Research Team
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Diana The more frequent dosing of mino 25mg is for Q6H not Q4H.. and the Benicar dosing can be taken to 40mg Q4H. If the change in mino and or Benicar dosing isnt making you feel any better, the symptoms may be telling you that an increase in dose is required.. Do not hesitate to use any of the meds adjustments. see the FAQ My Herxheimer reaction is too strong. What should I do? .. Check these options one at a time to assess and adjust your own situation. Tools to check:<< if having problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you. If you are concerned do not hesitate to contact your Dr. Let us know if you have any questions. all best, Barb ... |
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Aunt Diana Moderator
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Hello again, Just when I thought I was ready to go up to 100mg mino, I got hit with a ferocious herx. I kept wondering if maybe it was a flu...but I don't think so. Symptoms: exhausted, bones ache (1st time I've ever had that-not muscles, not joints but bones), legs felt like they were 100 lbs each, hot one minute, clammy & cold the next, pulling the covers up then kicking them off, some brain fog, which I hadn't felt for quite a while.....absolutely no energy. Advil helped a bit. So I took the advice of the experts and changed the mino dosing to 25mgQ6 hrs.. Benicar Q4 hrs. This went on for two days...today, the third day, I am feeling much better. Took my last 25mino dose yesterday noon. But I am up and moving around....bone ache is gone, legs feel much better, no brain fog. Now I don't know if that herx meant that I need to go up to 100mg mino or I need to keep it down .....anybody have any experience like this? any suggestions? Another question has arisen. It looks like I may need to move my abode in the next month or so. If I'm herxing like that last one....there is no way I'll be able to do it. So I was wondering if stopping MP for a while might be a good plan. I have some flexibility with timing but not much. (March is the month but I can put it off til mid or the end of March, I think.) If it is not recommended to go off MP in phase 1, I will have to make other plans re: move. I'm afraid to stop because I don't want to have to go back to the beginning....when I start up again. If it is best to wait til I'm into phase 2, I think I can rearrange the plan. Any advice would be greatly appreciated. (What would I do without you guys?) |
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Aussie Barb Research Team
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Thanks Diana Whilever the frequent mino dosing is holding the herx to tolerable, is what you need to do.. That may be a good plan to continue while you make your move too.. The herx doesnt always stop when stopping the abx. see some information about this in the FAQ How do I come off the MP and what about daylight? What precautions do I need to take when I am going out or when traveling away? As you stabilise on the mino and when you are ready, you can extend the schedule of the mino as is tolerable for you. all best, Barb ... |
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sunflower Member in Phase 2/3 
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hi diana, everyone is different, but my experience has been that just trying to stop the mino was not working for me when i needed to tend to family matters. i continued the beni q6h and mino 50 mg q24h (i had been taking 75 mg q72h or qod for quite awhile) and that enabled me to feel pretty well. you might want to experiment with extending out your dose to 72 hr or longer to see how you feel. once i was home again and ready, i just resumed the 75 mg qod and did fine. the thought of moving is daunting, so you take care, ok? best to ya...sun |
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Aunt Diana Moderator
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Thanks Sunflower, I think you have some good advice there....I think I was tryng to rush things along too much.....and WOW...what a lesson. I do not want to go throught that again, if I can avoid it When I stabilize I will use your suggestions. Take care. |
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Aunt Diana Moderator
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Well, after a thoroughly wasted day...much of which I slept....here I am to report the lastest in my battle with the beesties. I tried the frequent mino dosing (25mgQ6hr), the second or third dose (I'm a bit confused) I could feel the herx starting to gain steam again. It has not totally disagppeared but was tolerable for a while. Now my plan is to take a day off and try 25mg. tomorrow a.m. then another Q12 hrs. to see what happens. I have never spent so much time in bed in my life...sleeping. I believe it is my immune system working really hard and using up all my energy. That's what it feels like. When I do get up I have no strength and have to go about everything very carefully and slowly. I'm not too hungry and find one meal a day is about all I want. That will consist of a bowl of hearty soup or fruit and yogurt. Maybe some toast. (I am careful to buy un enriched bread from the local bakery) I always have my trust bottle of water at my side....it tastes delicious. Even getting dressed has been more than I can handle right now. When I'm up I sort of "prop myself" up in front of TV and watch the pretty colors move around the screen...I can barely follow a story line. Once I feel like I've got some strength back I'll try to go back to 50mg mino Q48....and hope that gets me through the next month if I do have to move and all that. Thanks for listening. (Now I'm going to write a long list for my poor husband to have to go pick up at the store....we're in for a blizzard I think.) |
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jrfoutin Research Team 
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Diana, I have had days with more hours spent sleeping, too. But I usually felt better after that with little burst of energy. I go by the rule of thumb that if my body says "tired" I sleep  . For me, it is an inexpensive assist to the MP that seems to work well. |
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Aussie Barb Research Team
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Diana If your body will follow your plan will be good, but dont be disappointed if it doesnt. If you follow the lead of the herx and use the mino as required may keep you at a more tolerable level of function. It can be difficult to read the subtle pull, but you are gaining experience all the time. all best, Barb ... |
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Aunt Diana Moderator
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Well, I'm back at 50mg mino Q48hrs. Took first dose last night and am now keeping a diary to see if I can determine a pattern. If I can find one then I'll try to take the mino so I'll herx while sleeping....it's a theory anyway. JRFoutin suggested it and it makes sense to me. Otherwise nothing extraordinary today, minor aches and pains but that's par for the course. |
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Aunt Diana Moderator
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JRFoutin was kind enough to send me a form that helps to identify responses and herxes in a chart. I started to use it today in hopes that I will eventually be able to make out a pattern so I can work my plan. Have been extremely exhausted now for days....I don't think I've ever slept so much in my life...very achy also...sometimes wake up dreaming about the achiness. Advil helps.....last night I woke up around 4a.m. in a good deal of pain...forced myself to take Advil and I could actually feel it when it started to work. Read for a while....or tried to read...and fell back into bed. Slept off and on til 2.p.m....felt like I slept all day yesterday....all this sleeping is unbelievable to a person who used to have to take a sleeping pill to sleep at all, at any time of day. It's not fun, and I wouldn't wish it on anyone but I believe my body is "healing itself" with all this sleep and rest. Ir's "catching up" to all that lost sleep in the past and all the non-healing and frenetic behavior.....I used to be totally compulsive about getting things done at certain times....a real driver of a person....no more....I'm hoping that this enforced resting is what the doctor ordered. So I've adjusted my thinking to stretch out my mino doses to 3 days. I will take my next 50 mg. dose of mino tomorrow, after I've accomplished some tasks I need to do, that I have been unable to do during the last two days. I can see that no matter how hard one would want to "rush" this program...it is not possible..one's body dictates. Thanks for listening, once again.. |
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Aunt Diana Moderator
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I'm finally over my "runaway herx" and have been dosing at 50 mg mino every three day, then every two day day, then every three day, and so on. I'm trying to decide what is best....maybe keeping this 2day/3day schedule will allow me to herx but not to build up to much steam. I'm feeling pretty good right now, the second day of the third mino dose, very little herxing but some. Should I continue like this for a while or do you think it's time to move on to 75....but treating it 2day/3day for a while. Is mild herxing as good as "tolerable" herxing? My next dose will be my 4th at this particular pattern. Any comments? I fell asleep in my chair today and when I got up to bed fell right back...no need for sleepin pill.....however I woke up at 1a.m. and fear I will need ambien to fall back to sleep. |
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Aussie Barb Research Team
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Diana For information to help you, see the precautions / instructions in the Phase One Guideline see NEW Addendum. some have it printed to check with regularly. and I'm eager to get well. How can I speed up my progress on the MP? mild herxing is fine. It is good to gain the experience. all best, Barb .... |
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Aunt Diana Moderator
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Thanks again for the feedback, Aussie Barb. I re-read the information and am now convinced that slow and steady is the way I want to go. I'll keep up the Q3day mino dosing at 50mg until I find I have no herxing. I much prefer the mild herxing and it's probably easier on the system. The bugs are still dying....that's all I want. It's unbelievable how many times you have to tell me the same thing before I "get it" but this is a pretty complicated situation. I'll forgive myself. |
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Aunt Diana Moderator
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Hello again everyone, I have just awakened from the "dead". I took my 50 mg mino on the Wed. around 4:30 (3 day dosing)....went to bed that evening around 8:00. Slept through (except for benicar awakening) until 9 or so in a.m. Started to make coffee...decided to go upstairs and fell asleep until 5.p.m... came downstairs for two hours and went back to sleep til 11pm. That's a total of 21 hours of sleep in the last day....is this normal? I keep telling myself that it's allowing my body to heal but I want to be sure. |
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Aussie Barb Research Team
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Diana Rest is indeed a very important part of managing and healing.. It is important for All to make sure of having adequate rest. By being pushed to the limit of tolerable herxing our body is working to capacity The aim or the key is to achieve and maintain tolerable Herxing (physically, mentally, and emotionally) by adjustment of meds dosing and schedule as suited individually to you within the guidelines and combined with the Essential aspects of diligently avoiding Light and vitamin D. You must determine what you consider tolerable for you. There is no harm in waiting it out if it suits you.. or in adjusting your meds if you wish to experiment with a change. it is all good experience gained toward Phase 2 and on.. If and when you wish, do not hesitate to use meds adjustments. Tools to check:.. Check these options one at a time to assess and adjust your own situation. check the precautions / instructions in the Phase One Doc.. and I'm eager to get well. How can I speed up my progress on the MP? all best, Barb .... |
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jrfoutin Research Team
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I've done sleep like this. Usually, I feel pretty good the next day so I figure I needed it. Sounds like you are are just doing what is needed at the time. If it goes on for longer than a couple of days, then that might mean some concern, but one day here and there lost in slumber has been helpful when I needed it. |
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Alayne Member in Phase 3
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Aunt Diana, I second Janet. Through my years of illness, I've had bouts of sleeping a day or two away. Sometimes three. I always felt better afterwards and felt in my gut that my body had done what it needed to to get some healing taken care of. When you think about it, doctors will induce comas in some patients to aid the healing process. Our bodies know (at least sometimes ) when to shut down and get to work. We heal faster and better in the deep stages of sleep. That's why they're called the restorative or rejuvenative stages - for both body and brain. Of course, if you turn into Rip Van Winkle... Take care...Alayne |
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Aunt Diana Moderator
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Thanks you guys....JR and Aylene. That's sort of what I felt but my "driven" personality has a real problem with the concept I may be turning into a "layabout". The other thing that occurs to me.....I haven't really slept a "natural sleep" (without some kind of sleeping med. for so long I can't remember) These sleeps I'm having now, when I just fall asleep, have a different quality to them. Again thank you for your support. |
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Aunt Diana Moderator
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I haven't posted in a while so I thought it was time for a progress report. Am still at 50mg mino, 40 benicar Q6 (after tryin 75mg a few weeks ago, I don't think I'm ready for that since I'm still herxing at 50 and had a runaway herx at 75) I've been experimenting with 3 and 4 day dosing of mino....I think the 3 day is good because I am still herxing lightly the 3rd day...even sometimes into the 4th. Yesterday was a really good day....I was up early and moving around much more easily. I finally finished some sewing projects that I must have started a month ago and have been in a pile in my bedroom driving me crazy. My husband and I went shopping last night and actually went out to dinner. I felt like people thought I was either a famous person or "on the lam" because of the dark glasses....I caught a few stares, now and then. It was funny. Another advantage was I think we got extra good service....when I asked if they could turn the music a bit lower they did...and the manager came over to the table to apologize with great flourish. Sometimes it pays to look mysterious. I'm planning on staying on the 50 mg until I get through my move and until I stop herxing on it. Is that about right? Once again, I would like to thank everyone for their support....this protocol would be almost impossible if it weren't for the website. My husband and I often discuss how "brilliant" it was to create this....and that this is the best possible use of the internet. "Hats off' to Trevor Marshall and his fabulous team. |
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Aussie Barb Research Team
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Thanks Diana re "I'm planning on staying on the 50 mg until I get through my move and until I stop herxing on it. Is that about right?" You are doing well, getting a feel for the meds, gaining experience. as long as the herx stays tolerable or milder at that level is fine. all best, Barb ... |
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Aunt Diana Moderator
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Well, I know I've been remiss in posting but things have been difficult around here lately. We are trying to sell a house so we moved all my furniture over there to "cozy it " for the spring market. It also made sense that I should stay there during the heart of the winter...it's a bit easier in the cold...attached garage, better heating system et. and was a lot easier to live in as a "cave". But this past weekend we moved out and back into my house which is great on one level because I love my house, and am anticipating enjoying my beautiful garden as it gets warmer....I'm fantasizing of sitting out at night just to be out there....but it has been physically depleting on both of us. And now we are sitting here in a house with no furniture...just beds for us and a good comfy chair for each and the kithchen table and chairs. We're sort of camping for a while. When our other house sells we will of course move everything back over here....but it's actaully been sort of peaceful....no TV , no radio, no bright lights....we've been camping. I stretched my 50mg mino doses to 3 days...sometimes 4 during this time. I still find the third day can be pretty tough herx wise....I don't know why...but the fourth day is usually easy. My herxes are not intolerble...but they are definitely there. Today I slept til 12...made it to an appointment...came home and crashed again til it got dark. went for blood tests today and will report them as I get them. It's hard to know If I'm feeling improvement...small things seem to be improving...sleeping and falling back to sleep are a huge improvement. I feel like I'm finally doing the convalescing I should have been doing since I got sick...I alwasy fought to overcome it...it should have rested more. And now I am. It feels good. My mood lately has not been great but I blame tht on family pressures and all this physical stuff my husband and I have had to take care of; I am so loooking forward to the warmer weathr...best to all |
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Aunt Diana Moderator
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We are finally moved and fairly settled. I have been sleeping a lot and have been having some pretty strong emotional herxing. Very teary and feeling very sorry for myself kind of thing. Yesterday was a bad neuro day for me...the worst I've had in months, and it made me realize that one of the symptoms I used to have on a fairly regular basis has seemed to disappear...my face would droop...I would lose muscle tone and it seemed to go flat at least once a week. Before when I would have a neuro problem that would always be there (the facial droop)....yesterday it didn't happen and today my neuro problem has cleared up. I noticed there was a full moon yesterday and am wondering if that has an effect on the neuro herxing? Physically I am still somewhat achy and itchy, but not bad, have some minor digestive problems, I'm sleeping well and feeling good when I lie there in bed....I had totally forgotten about feeling actually nice sensations...they seem to be returning. Just feeling good for moments here and there. Last night I actually listened to some music and really enjoyed it and sang along with my stereo....haven't done that in a long time. We haven't hooked the TV up yet, and that's been a nice vacation. I'm starting to wonder if it's good to watch all that TV just to get through the days. Sometimes there's good stuff on, like history channel, but a lot of it is just depressing, particularly the news. My question for today is: I'm contemplating upping my mino dosage to 75 every 3 days. Any opinions on this? Since I am still mildly herxing I am somewhat confused....of course I want to kill as many bugs as I can....do you think I'm ready? I know of course, that no one really knows, but if anyone has and suggestions I'd love to hear them. (Currently I'm taking 50 mg every 3 days. |
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Dr Trevor Marshall Research Team 
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Hey, Aunt Diana, lets not have any talk about faces changing during a full moon |
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DianeC Member in Phase 3 
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Hello Diana, That is wonderful that you will be finally settled back in your home with all of the conveninces (I can't spell anymore  ) Camping can be quite unsettling especially at a time when you are trying to get well Yes it sounds like your garden will be a source of great peace for you; it won't be long now as spring is just about here Enjoy that timeAs far as increasing your dose, I am no pro but have just recently upped my dose to 50mg q72h You had mentioned that you had a runaway herx when you started 75mg before. How many doses of 75mg did you take before that happened? What kind of herx was it? The reason I ask is that I have only taken 2 doses of 50mg so far and have not really noticed increased intensity of herxing but different types of herxing symptoms; for instance I am now herxing through the pores of the skin. I think that the increased dosage can creep up on you; that you will feel okay but then all of a sudden the cumulation of a few doses can really hit you...bam! You sound like you really have a handle on your dosing If you feel that you have a day where there will not be too many demands on you; that may be the day to try it once more and you can always go back again to 50mg. That is the beauty of this protocolBest wishes always DianeC |
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Aunt Diana Moderator
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Thank you Diane, for your intelligent input....don't you just love this support group on this website. |
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Aunt Diana Moderator
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Greetings to all. Unfortunatley, my husband had to go into the hospital yesterday for what looks like congestive heart failure. I was planning to ramp up to 75 mg. yesterday but of course with this turn of events I have to wait. One of us has to be well. I skipped my mino dose altogether so now it has been 5 days since last dose...I am still herxing, mildly but definitely so I guess this is not that bad. I think they will send him home tomorrow...they're running lots of tests but he's feeling 100% better since they got that fluid out of his lungs. Is it a problem that I am still at 50 mg. mino halfway into my fourth month on the MP? |
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Aunt Diana Moderator
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Hello everyone, I finally know what will be next after 5 days of my husband, Bill's hospital stay. Tomorrow he will undergo triple bypass surgery. I am actually relieved because I knew something was wrong and I am confident that he will be better after he heals. And everything I've heard about this operation has been positive. It poses problems for me as far as my continuing the MP right now....at this point I've been off mino for a week or so. I will start it up again the minute things start to resolve. From what I understand this shouldn't be too awful. If I am to believe what they tell me, Bill will need a week or so in the hospital and I don't want to be herxing during that time.....is this okay? Or should I tough it out and start the mino again. I'm afraid of a bad herx which I've had several of. Woe is me. |
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Aussie Barb Research Team
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Diana The key is to be tolerable at all times, and that is regarding during and coping with all of Lifes circumstances, so if you cannot manage to do the mino now, that is fine.. whatever you can manage most easily. all best wishes for the op and after - for both of you. take care, Barb ... |
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Dr Trevor Marshall Research Team
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Diana, Our thoughts are with you and your husband during these tough times |
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Aunt Diana Moderator
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Thank you all for your kindness and support. Last Tues. my husband underwent quadruple bypass surgery, he was more clogged than they realized. Plus they repaired a leaky valve and performed a Maze operation for fibrillating. I saw him yesterday and was pleasantly surprised, although he will experience much pain in the coming days I think he's already looking better...his coloring was much better and he was ab le to joke around and act for himself. He'd already been up with some physical therapy. I am greatly relieved by all this.. God only knows if he'd even be alive today if he hadn't had this operation. My sister in law is comimg to stay with us for a week or so, so that she can help and so that I can start back on the MP. We will also be having visiting nurses so on Monday I'd like to start back. It's been about two weeks that I have been off the mino....i was doing 50 mg every three days and wondered what dose I should start at when I go back to it. I have been doing all the other aspects of the Mp as well as I have been able.....still in cave and covered totally when I go out and still taking the benicar. I believe I'm still herxing albeit very mildly. Again thank you all for your support. |
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Foundation Staff .
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Diana, When you've taken a break from the MP for an extended period, it's always best to err on the side of caution and restart with 25mg of minocycline every other day as per the phase one guideline. Based on your symptoms, you should be able to ramp up faster than the first time around and will soon be back to where you left off. As always, keep the dosing adjustments in mind to make sure the Herx reactions are tolerable. My best wishes for your husbad's speedy recovery, Meg |
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Aunt Diana Moderator
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Bill has been doing quite well. He'll be coming home in a few days so I think we're past the worst part. HIs sister is arriving today to help out and to enable me to start on the MP again. We will be getting lots of help from Visiting Nurses, I'm told and I believe they will arrange for doctors trips and future hospital visits. I just got my D results from the doctor Vit D : 10, and 125D is at 31. I'm pleased with that progress and wonder if that is why I am still herxing even though I have been off mino for two weeks. Today my herx symptoms are heavy legs, achy shoulders and arms, and I'm sleeping alot. I think I'll start up on mino tonight but not sure til I speak with my sister in law. Thanks again for all the kind words |
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Dr Trevor Marshall Research Team
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Glad to hear Bill will be OK. Yes, your innate immune system can work properly when the VDR is not over-stimulated, and the antibiotics are often not necessary. They do ensure a more even species-kill, and a establish a pattern to the herxing. |
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Aunt Diana Moderator
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I just recieved my latest test results take non 3/14/06 (before I stopped taking mino) ACE 28 Renin 51 All 240 25-OHD <10 1,25 (oh)2D 64 My doctor would like your interpretation of these. thanking you i advance |
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Aussie Barb Research Team
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Diana I see that your 25D has halved since your first tests.. good work.. You may like to print these FAQs and any relevant links within them, for your Dr. What do my lab tests mean? How often should I test D levels? What are the target numbers? Let us know if Dr has further questions. all best, Barb ... |
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Aunt Diana Moderator
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I started back on 25 mg mino 3 days ago...I'm dismayed at my level of herxing....I've been sleeping a lot and and am very achy and weak. While I was off the mino those two weeks I was practically normal. I'm trying to figure out some adjustment while my sister in law is still here, but she leaves on MOnday and then I'm on my own with Bill who has a whole raft of other problems. I can see if I can get other help in here but at the moment don't kknow how I can handle him, doctors and hospital visits, etc. and staay on protocol. I need some advice. thanks in advance. |
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Aussie Barb Research Team
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Diana For help re your home care and husband: you can ask your Dr what is available. Let Dr know your circumstances, that you need assistance. for help with your MP: it depends what you are wanting to do. If you'd like to continue to take your MP meds with least herxing possible you can adjust your meds as per the FAQ My Herxheimer reaction is too strong. What should I do? see also Tools to check: << is good to have this handy to check what you may be needing. please do not hesitate to make adjustments in any area, and feel free to ask on the Board. thank you. 25 mg mino << can be extended or taken more frequently, whichever works best for you for slowing the herx.. Benicar: see When and why should I vary my Benicar schedule? When your SIL leaves, you may find that even though it may be extra effort, staying in contact with the Board is supportive as well.. all best, Barb ... |
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Aunt Diana Moderator
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This has been a pretty Hellish week or so. My husband has been home for over a week, his sister who had come to help has gone and we are on our own except for the visiting nurse. I have been sleeping a lot so am totally unable to help him in the morning til I can get up. He's a big man anyway ( 300+ lb.s and 6"3") so there's not much I can do if he needs physical help. He's having a hard time handling all the meds he's supposed to remember to take and is stubborn to boot. (I bought him a vibrating alarm clock, for instance, to remind him to take meds but he hasn't used it yet}-he can't hear the regular timers and alarm clocks I've tried to set up. But he is healling nicely....in a few weeks he'll be back to normal (which makes me jealous) I've also been herxing pretty badly so have been in a horrible mood. Today I tried the 25 mino trick and will keep that up if it works....I'll start out every 12 hours....if I need I'll adjust to 6hrs. I think it may be helping a bit. I'm going to ask my doctor for an antidepressant to try to get me through this....I find I'm crying all the time.)) Sorry for such a depressing post but I guessed I should check in with all. |
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Aussie Barb Research Team
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Thanks Diana We wish you well with all.. your posting gives others the opportunity to send you some support and encouragement also.. This FAQ may be helpful for discussion with Dr : How can I control my anxiety and depression? Let us know if we can assist you in any way. all best, Barb ... |
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Alayne Member in Phase 3
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Hi Diana, am rooting for you! I guess one thing on the bright side (for now) is that your husband is too heavy for you to have to lift. Leaves out at least one thing for you to do, right. I'm awfully sorry you're having such a tough time of it. Herxing while going through this is obviously very difficult. I hope you can tame the herxing some and that the anti-anxiety/depression med helps. Lowering your Mino to 25mg might help take care of the depression too, don't forget. I'll be off next week to help my dad who shattered his lower leg. To be honest, he and my mum are very upset by the long recovery time ahead - minimum 3 months until he can put weight on it again. Like you, I'm more than a tad envious of our loved ones' estimated recovery times. Best of everything!...Alayne Last edited on Sat Apr 8th, 2006 06:48 by Alayne |
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Jeannine Board Staff 
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Hi Aunt Diana, You might consider home health to help with your husband. If you want to contact me I can help you get a better insight...as I dont know what kind of health coverage you have nor what his illness is...I just read the one post and dont know if you talked about that anywhere else...Just PM and tell me the above info....does he have private insurance or medicare etc....Hope this might help you in some way... Hugs, Jeannine |
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Vicki SA Member in Phase 3 
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All the best Diana, you are doing a good job dealing with all that is happening! My thoughts are with you and hope for suitable support to help you through all this cheerio Vicki |
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DianeC Member in Phase 3
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Hello Diana, That is wonderful news that your husband came through the surgery and is doing well It is best to just take one day at a time and focus on that day alone and then you may not feel so overwhelmed. It appears that your body is trying to do an adjustment now that you have started back on the 25mg mino. Things will get better; just try to focus on the positive My thoughts and best wishes are coming your way DianeC |
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Aunt Diana Moderator
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Thank you all for your encouragement and support. I apologize for not getting back to everyone but I'm sure you all understand. I've been back on the mino now for about two weeks....started back at 25mg and a few days ago thought I was ready to ramp up but was afraid to go to 50mg. So I took about 33 mg. About 32 hours later I woke up with a lot of pain all over...It lasted several days and I was pretty miserable....slept as much as possible but was taking a lot of painkillers....4 advil hardly touched it. I tried the 25mg mino dosing every 12 hrs (managed that twice) and finally when I woke up tonight it feels as if the herx has lifted. I took my last 25mg dose at 3p.m. and think I'll take one now, 3a.m. I must admit I'm afraid to have a herx like that again. I have been advised to go to 50mg, that my body may be needing more mino, and before I did that wanted to check in for any advice others may have. |
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Aussie Barb Research Team
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Diana There is information and links that may be helpful in this post: symptoms Increasing Tip I'm eager to get well. How can I speed up my progress on the MP? and see Tools to check: all best, Barb ... |
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Aunt Diana Moderator
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Well, here I am again.....things have finally settled down a bit after Bill's surgery. We have been like two wounded animals, really unable to help the other very much. He has moved over to his other house and It is easier for both of us. He gets the visiting nurses and I get to sleep. It' s not perfect but it is better than it was. We were really having a hard time....me with my neuro herxing and him with his emotions and difficulty dealing with the reality as it was setting in. He has had a very hard time dealinig with his weakness....he has always been almost "superman" and this operation knocked him for a loop. I had been coasting on 25mg mino every day and kept the herx at a minimal but decided that it is now time to ramp up again. Took 50mg mino24 hrs ago....I have been sleeping a lot (14 hrs+ perday) am waiting til tomorrow to keep the herx going...it's pretty mild right now and I have some appts. tomorrow. Plan to take another 50 mg tomorrow eve. I'm hoping I'll be able to ramp up and get to 100 before the end of the month (my sixth month) Does this make sense? any advice? Once again thanking you in advance. Bill and I both agree this new arrangement is better for both of us right now. |
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Aussie Barb Research Team
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Thanks Diana I am pleased you and Bill have come to a mutually acceptable arrangement.. and that you can do your MP.. re meds.. Just increase the meds as you can without pushing yourself to get to 100mg.. you dont need to have reached the 100mg. you can move to the Modified Phase 2 if necessary. see this FAQ Where can I find phase two and three? for information re sending for the Questionnaire to fill and return, and you will be given feedback and access to the Phase 2 Information to discuss with your Dr. and before starting Phase 2, we encourage Members to begin a progress report in the Phase 2 forum to discuss recommendations re their new meds and dosing. Thank you. all best, Barb ... |
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Aunt Diana Moderator
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Well I'm glad to report that I've had two doses now at 50mg of mino....with very little herx. Does this mean I should ramp up to 75 or shuld I wait? I think I'm ready for 75. thanks for any suggestions |
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Aussie Barb Research Team
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Thanks Diana, In this your return to Phase One.. yes, it is ok to increase to 75mg. should the herx start looking like going toward high, you can take the mino 25mg or 50mg again to bring it back.. all best, Barb ... |
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Aunt Diana Moderator
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Thanks Aussie Barb, I hope that corner is just around the bend for you.. We are all praying for that for you. Keep up the good work and the spirit! It will happen....I know that. |
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Aunt Diana Moderator
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I finally got up the courge to take the 75mg mino yesterday. It may be a bit early to assess but so far so good. I have some lower back ache and slept almost all day today, but am feeling pretty okay so far. I have been given the go ahead for Phase 2 but that will not happen til after I see my doctor in early June. Meanwhile I'll try to ramp up to 100mg mino again. I'm really interested to see what my Vit D is at....I've been really strict about avoiding light and D in diet. My husband Bill, is doing much better....so things have gotten a lot easier around here. It was rough going there for a while with both of us so sick. That's all for now. |
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Aunt Diana Moderator
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Hello everyone, I must admit the 75 mg are really the hardest so far....my herxing has been very painful....all over subcutaneous ouch. Also a bit teary. I tried drawing it out for a few days after the third dose because my sister was coming to visit....think that was a mistake; I slept all day and all night practically for two days. Was awake for about 6or 7 hours a day and very tired as well as achy. Two nights ago I switched to 50mg mino and that definitely relieved herx...felt pretty good for two days. Although major difficulty sleeping....maybe I was all slept out. Now I'm going to try alternating the 75mg with 50 mg. and see if that helps. I can still tell I'm killing them beasties I'm hoping to attain the 100mg level by the time I start 2nd phase. Maybe that is not so important. Any comments? |
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Aussie Barb Research Team
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Diana It isnt necessary for you to attain the 100mg level before commencing the Modified Phase Two.. Dr Marshall recommends discussing with Doc re the addition of a 2nd abx asap esp as you have been on MP for close to 6 months. Before starting Mod Phase 2, we encourage you to begin a progress report in the Phase 2 forum to discuss your new meds and dosing. Thank you. all best, Barb .... |
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Aunt Diana Moderator
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I've been rotating the mino dosage; 75mg then 50 mg on 2nd day, then 75mg etc. Have done this twice with much easier herxing and belive tomorrow I will ramp up to 75 each dose. The amazing thing is that yesterday a.m. I woke up at 6:30a.m. (unheard of in the last 15 years) and kept going all day until 12 midnight when I finally went to bed. I couldn't believe it! Very few aches and pains. Needed to sedate myself to sleep. this morning I am up again at 6:30 and have all kinds of plans of chores I want to accomplish today....my head seems to be working. Just four days ago I could barely get out of bed! I am really excited ....it feels like the old me has come back for a while. We'll see how long this lasts but I am enjoying every moment for now. |
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jrfoutin Research Team
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Good deal Diana. It was such a relief when I finally got out of the "sick all the time" rut and now have "more or less" well-defined Herx events and "more or less" well-defined energy spurts in between. I think it is like Belinda said in the Chicago conference CDs. Wellness sort of creeps up on you in and around the Herxheimer days. There are enough surprises either with good days or bad days that I know I'm not out of the woods yet, but at least seeing the pattern that others have described makes me take some courage for the rest of the journey. |
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sunflower Member in Phase 2/3
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hi diana, so glad to see you getting some long bursts of energy; it's so exciting, isn't it! 75 mg mino was definately the worst level in phase 1 for me--worse than 100 mg. it may be that way for you also, but alternating doses sounds like it's working to moderate the herxing for ya. hope your hubby continues to recover well from his surgery, also. you guys have really been through the ringer, haven't you? i'm hoping much better days are ahead for both of you . God bless...sun |
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Vicki SA Member in Phase 3
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Go Diana! I am also having bursts of energy and finding myself doing things that I haven't done for a very long time. I can now load the dishwasher anytime it takes my fancy LOL. Fancy rejoicing about being able to do housework LOL. Feeling better does creep up on you and inspiration follows! For any needing to rest more in Phase 1, don't panic! It IS worth it. cheerio Vicki |
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Aunt Diana Moderator
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Thank you all for your lovely replies. I am so happy because I haven't felt this way for 17 years. This program is working!!!!! Hallelulla!!! And much gratitude to Dr. Marshall and his "dream team". |
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Aunt Diana Moderator
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I thought it was time to share some of my experiences on the MP with those of you who are starting out. I have been on MP now for 8 months. It has been an interesting and somewhat bumpy ride, but I am definitely going in the right direction. It took me a while to get through phase I because during that time my husband needed heart surgery....so I had to stop the protocol for a while. During that time I felt I had more energy than I would have had before the protocol. I now wish I had made a list of my symptoms so I could systematically rule them out as they cleared, but alas I did not. I remember one, however, that I haven't had since I started the MP ( that is the right side of my face would droop at least once a week)....(sort of like Bell''s Palsy) that hasn't happened in ages; I am grateful for that. Another improvement that is wonderful is I am reading again. I didn't read for 15 years or so...at least I didn't retain anything. Now I'm reading a book a day and loving it. I am finding phase 2 a bit easier than the first phase....I remember I had a lot of pain during phase 1...very little other than aches and stiffness in phase 2....but my neuro herxing has probably worsened. I have been alone since June and that is starting to get to me so I've decided to take a break and join my husband in Florida. ( I stayed up north because of the bright sun in Florida) but I guess we can figure that out as we go along. My bedroom is already dark and the den is dark so I can use those two rooms for the time being. I am so thankful that there is at last an answer to my health problems. And so grateful to Dr Marshall and his team.....this website is the best part of it all. Happy herxing to all. ADD December 2006: This year has been the first year I've been able to send out christmas cards in a long time...it incredible that I can focus and my handwriting is normal again...I'm even updating and starting a new address book. That doesn't seem like a lot to a well person but it is unheard of for me, in the past many years....sometimes the improvements sneak up on you and take you by surprise. February 2007: Sometimes, now I can just fall asleep at night..not too often....yet still, it's unbelievable since I haven't been able to do that without sleep meds for over40 years. March 2007: My allergies have almost disappeared. This protocol works wonders. May 2008: I have been on the MP a little more than 2.25 years now.... I came down with Lyme Disease about 20 years ago. I had been on amoxycillin and various other oral antibiotics pretty steadily for 17+ years. I would reach a point where I felt 75-80 percent back to normal and would try to stop the abx. Each time I did that, I wouid quickly relapse and start to feel awful again. I had both neuro and the arthritic symptoms....they were all horrible. But of all of them I believe the neuro was the worst.....at times I would have such severe vertigo that I would be thrown to floor and have to stay there until the vertigo wouild stop. It was impossible to stand up or move without making it worse...once this happened to me in a public park. I'm sure people thought I was drunk....two kind men realized what was happening and carried me to my car in a parking garage a few blocks away. The vertigo was so severe that I couild not make out their faces....it was like being inside of a kaleidoscope and my eyes could not focus. So I will never know who those men were. I was fortunate that I was able to talk and tell them where I had parked. Well, I think that gives you some idea of the severity of my symptoms....the arthritis was debilitating in its own right....by the time I was in my early 50s I was barely able to touch the ground....my flexiblitly kept getting worse until I couldn't put on a pair of socks. I was also taking Advil as if they were "tic tacs:. I would define my days as a "4 Advil day" or and 8 Advil Day, etc. In 1984 I had started my own business in Boston and much to everyones surprise it became a great success fairly quickly. (I am so thankful for that...because by the time I was really sick, about 4 years later, the business had gained enough momentum that it was able to carry on without my leadership. If it had not been for that business, I don't know what I would have done because there was no way I could hold a job. I finally had to admit I couildn't do it anymore in 2004....that was when I closed the business. Soon after that in Sept. of 2005 I discovered the MP and started it as soon as I could get all my ducks in a row. Today....I absolutely cannot believe how wonderful I feel. I thought I would never feel this way again. (Actually, I had forgotten how it felt to feel good) Interestingly, this has sort of snuck up on me. The first two years were very difficult....there were times I wasn't sure I was going to make it. My IPs were very severe....there were many times I would go for a week without beiing able to bathe or even wash. (Something unfathomable to a neatnik like me) Just to emphasize how severe these were...I could hardly make it to the bathroom....sometimes I did not. I don't want to kid you....it was very difficult to learn how to control the IPs. But during the past two or three months the IP's have become very tolerable and I have been getting stronger. My good periods have been lasting longer and longer...this most recent 10 day cycle I felt good every day (a first). Then this week, I have been able to do things my brain thought it would never do again....I have been multi tasking, organizing and focussing in a way I had forgotten was possible. I am simply so thrilled to report these new (or renewed) abilities that I want to "shout it from the rooftops". I hope this gives you the encouragement to keep going....there were times it felt like this was endless and was going to be my life forever....but here I am. on my way back to my old self. Thank you from the bottom of my heart to Dr. Marshall, Meg Mangin, Aussie Barb, JR Foutin, Julia, PB, Vez and all of the people on the website who have been so helpful and supportive. It's only a matter of time that you will get the recognition that you so deserve. July 08: Oh yes....that reminds me of my "allergies" which apparently were not alllergies at all, since they have all disappeared. I had hepa filters, special bedding, popped claritin and benadryl all the time and felt miserable with itchy eyes and stuffy head. In a year or so I'm going to try a new patch test for hair dye, hoping that perhaps that allergy will leave as well. When I consider the money I am saving by not needing hepa filters, allergy meds, the Allergist and his weekly pinprick....(which did no good whatever) and all the stuff I used to get in the health food store...I'm sure I spend less on the MP meds. see also Aunt Diana: healthy teeth and gums after 3-4 months on the MP Aunt Diana: I am definitely going in the right direction. |
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Aunt Diana Moderator
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May, 2008 I have been on the MP a little more than 2.25 years now.... I came down with Lyme Disease about 20 years ago. I had been on amoxycillin and various other oral antibiotics pretty steadily for 17+ years. I would reach a point where I felt 75-80 percent back to normal and would try to stop the abx. Each time I did that, I wouid quickly relapse and start to feel awful again. I had both neuro and the arthritic symptoms....they were all horrible. But of all of them I believe the neuro was the worst.....at times I would have such severe vertigo that I would be thrown to floor and have to stay there until the vertigo wouild stop. It was impossible to stand up or move without making it worse...once this happened to me in a public park. I'm sure people thought I was drunk....two kind men realized what was happening and carried me to my car in a parking garage a few blocks away. The vertigo was so severe that I couild not make out their faces....it was like being inside of a kaleidoscope and my eyes could not focus. So I will never know who those men were. I was fortunate that I was able to talk and tell them where I had parked. Well, I think that gives you some idea of the severity of my symptoms....the arthritis was debilitating in its own right....by the time I was in my early 50s I was barely able to touch the ground....my flexiblitly kept getting worse until I couldn't put on a pair of socks. I was also taking Advil as if they were "tic tacs:. I would define my days as a "4 Advil day" or and 8 Advil Day, etc. In 1984 I had started my own business in Boston and much to everyones surprise it became a great success fairly quickly. (I am so thankful for that...because by the time I was really sick, about 4 years later, the business had gained enough momentum that it was able to carry on without my leadership. If it had not been for that business, I don't know what I would have done because there was no way I could hold a job. I finally had to admit I couildn't do it anymore in 2004....that was when I closed the business. Soon after that in Sept. of 2005 I discovered the MP and started it as soon as I could get all my ducks in a row. Today....I absolutely cannot believe how wonderful I feel. I thought I would never feel this way again. (Actually, I had forgotten how it felt to feel good) Interestingly, this has sort of snuck up on me. The first two years were very difficult....there were times I wasn't sure I was going to make it. My IPs were very severe....there were many times I would go for a week without beiing able to bathe or even wash. (Something unfathomable to a neatnik like me) Just to emphasize how severe these were...I could hardly make it to the bathroom....sometimes I did not. I don't want to kid you....it is very difficult to learn how to control the IPs. But during the past two or three months the IP's have become very tolerable and I have been getting stronger. My good periods have been lasting longer and longer...this most recent 10 day cycle I felt good every day (a first). Then this week, I have been able to do things my brain thought it would never do again....I have been multi tasking, organizing and focussing in a way I had forgotten was possible. I am simply so thrilled to report these new (or renewed) abilities that I want to "shout it from the rooftops". I hope this gives you the encouragement to keep going....there were times it felt like this was endless and was going to be my life forever....but here I am. on my way back to my old self. Thank you from the bottom of my heart to Dr. Marshall, Meg Mangin, Aussie Barb, JR Foutin, Julia, PB, Vez and all of the people on the website who have been so helpful and supportive. It's only a matter of time that you will get the recognition that you so deserve. August 08: Have been organizing home office and paying bills....first time in long time, Husband used to do it but I think I'm able to stick it with it now. |
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Aunt Diana Moderator
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I feel compelled to write here tonight because I am beside myself with joy!! This may not seem to amount to much to someone who has not been in my shoes but, today, after a long car ride to and from a doctor's appt, i was feeling so good I got back into the car and went back to the mall by MYSELF!!. I haven't done this in 2.5 years. I went to one of my favorite arts and crafts shops and walked up and down the aisles, just the way I would have done 21 years ago, before I came down with Lyme disease. This is the first time I have been in a store and did not get confused or overwhelmed or have any neurological problems beset me in over 20 years!! I could have stayed in that store for hours....I just knew it....and I would have been fine. I am so ecstatic about this....it is as if for the first time I am really aware that what my recovery is going to be like...and I am crying right now as I write this. This is better than waking up on Christmas morning as a kid....this is the most wonderful experience I have ever had. All my fears and doubts have just gone out the window....I will be well again and I will be like other people again. Hooray. And Thank you. |
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Vicki SA Member in Phase 3
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Great to hear your news! May those improvements keep coming and adventures abound ! Cheerio Vicki |
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Sunbeam Member in Phase 2
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Aunt Dianna, Thank you for that last paragraph, it was just what I needed to hear I am so delighted for you. I feel hopefull, Lynn |
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Dr Trevor Marshall Research Team
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thelymelight Member in Phase 1 
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Thanks Diana for your wondeful news!!!..It is so encouraging for newbies like myself...as I too have had Lyme for over 20 yrs and have been disabled by it for the past 18 yrs.... I start my Minocin in Oct, (still weaning from cortisol) so I look forward for the healing to begin...Just curious, how long have you been on the MP now? Keep the good news coming! Cheers ~ Lisa |
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Aunt Diana Moderator
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Thank you all for your good wishes. To answer Lisa's question...I have been on the MP for 2yrs and 8 mos. (I think I started to see real and lasting recovery at about the 2.5 yr mark....things just keep getting better...I recover from any overexertion within a few hours now....not days). I am still at fairly low doses of abx, too, taking it slow and keeping things as tolerable as possible. Keep going everyone....you will not believe how wonderful it is when you start to get better. It can only be a matter of time and the world will recognize this discovery for what it is....I feel so fortunate that I have been one of earlier pioneers. Thank you again, Dr. Marshall. There really are no words good enough to express my feelings. |
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Aunt Diana Moderator
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Phase 3 meds benicar Q4 Light: hard to keep track....am much less sensitive lately and have been "out and about" much more frequently. (shopping during daylight in car, 1-2hrs every other day) Always with noirs and sunscreen, but have not been as strict with long sleeves. Fatigue varies 0-8 ( mostly 0-3) aches varies 0 - 4 energy 0- 5 (great on many days) insomnia 1-4 (this had disappeared but is resurfacing) tending to make my schedule weird hot to touch 0-3 general malaise 0-3 blurred vision 0-3 (intermittent) depression 0- 9 (really bad for a few days week before last when I had upped clindy to 74mg brain fog 0-1 Last two weeks have been generally good with a definite increase in activity, planning ahead, creativity, follow through, etc. Brain fog is minimal. Have started to go out without needing a driver. I have much more stamina and feel like I am almost "normal" much of the time. Worst problem is emotional (swings, depression and anger). I intend to ask doc for an antidepressant. All in all I am very pleased with my progress. I never believed I would feel this normal again. Thanks again to all the hard work that has gone into this. I almost forgot to mention...the other night I woke up to take benicar and realized I had caught a terrible cold. I was sniffling and sneezing, had a very scratchy throat and that terrible stuffed up feeling in my head. I realized at the moment, that I hadn't experienced a cold for years and dreaded the next 6 days or so, thinking that it would take that long probably to recover. After getting up to get another box of kleenex I fell bac to sleep feeling very miserable. When I woke up I had no sign of a cold at all. Don't know if that was a herx or if my immune system just kicked "butt" and knocked that cold right out. Whatever it was, it was amazing. |
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Aunt Diana Moderator
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Phase 3, benicar q4 Light: 3-4 hours well covered &noirs in car for appts. and shopping Non MP meds none Neuro 3-4 gen'l malaise 4 brain fog varies 2 - 8 trouble finding words varies 0 -7 overall feeling lousy 3-4 fatigue 4-5 stiffness 0 - 4 joint pain 5 (need extra hydrocone a few times per week) sleeping a lot 3-4 I'm tapering off a bit so I can get a break. I have lots of important and potentially stressful obligations coming up so I want to be in my best possible form. Aside from that, I've begun several projects....have probably bitten off more than I should but it's exciting to be feeling like doing these things again. I have organized my work room for sewing and my studio for painting...plan to do some faux painting (haven't been up to this for the past several years but feel if I proceed slowly I can probably accomplish some interesting things). Hooray!! I also have signed up for some courses this fall. Wish me luck!! I will be taking a sculpting class. This can be quite physically strenuous but I feel that I am up to it if I go slowly. It's so much fun to be getting back to things I love to do. The other is an oil painting class using old world techniques, and I'm very excited about these. I'd really like to take a complete break but will start by tapering off on the meds. and see how this goes first....then perhaps drop the abx a bit more. Would love to see how I feel when I'm not herxing so this is the way I will try to get there. Thank you everyone. |
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Aunt Diana Moderator
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Copies of my posts To other Members: I am sorry to hear what a rough time you are having. In the beginning it is very difficult. You really will need to understand that and realize it is part of the healing. Tracy's advice about trying to get your mind off of things is excellent. TV, even if it's dribble gets you out of yourself and helps pass time. I had been ill for almost 20yrs when I came accross MP 3 yrs ago. The first thing that really thrilled me was...about 1 year into it I found I was able to read again and retain what I was reading. Hadn't been able to do that for years. Once I was able to read...that is how I keep myself distracted. The next thing that happened was I found myself falling asleep...without the help of sleep aids. (I hadn't done that for forty years)....I was waking up refreshed and my life changed.) For the past several years before MP I had been planning my life around the desperate need to get a good night's sleep. I still have bouts of insomnia but they are herx related. It is the most wonderful feeling to be able to lie on the sofa and fall asleep.... Then I noticed my gums were not bleeding or receding anymore. My dentist can hardly believe the improvement. All these things are small but they tell me that something is definitely changing and my body is healing. The skin on the back of my hands and at my neckline has become much softer....there's actually a new layer of fat beneath the skin in those areas...they had been ravaged by sun and now feel like baby's skin. (Dr. Marshall tells me that's happening because my stem cells are now regenerating new cells) I hope by now you get the idea.....this works. In ways that you would have never guessed. Oh, I almost forgot about my eyes....they aren't perfect yet but I have no floaters (that resolved early on) and they aren't as dry and gritty as they had gotten. I used to have eye drops in every room in the house I needed to use them so frequently to lubricate my eyes. I now only need the drops occasionally when I wake up, but even then, I could live without the drops. One more thing...my allergies have disappeared. No more allergic reactions, no more hayfever...it's really unbelievable how many things have improved. I'm sure I've left things out...and new ones keep happening...hang in there..it takes time. I wish I had made a list of all my problems at the start, bus, alas I did not. As the symptoms fall away it is hard to even remember you once had them...but I'll do my best. Myriads of little things have improved. The first really exciting thing I noticed was about the 1 year point when I realized I could read again and retain what I was reading. I had not been able to do this for 20 years. Second thing I noticed was my gums....I had always had periodental disease and bad teeth. Have spent an absolute fortune on dentists...all of a sudden, I have the healthiest gums in town. They have even grown back in the areas that they had started receding. I used to have bad vertigo attacks...they've gone entirely. Floaters in my eyes have been gone for a long time. A numb area in my leg has become "un_numb". My hair is starting to come in brown rather than grey. My personality has come back (when I'm not herxing)...I am much perkier and can carry on a conversation again. I can do multiple things at the same time...for years I could barely handle one thing at a time. Physically I am much more flexible...I can squat and kneel and get up again withouit even thinking about it. Oh....the biggest thiing of all....sleep. I can fall asleep without sleep meds, I can doze and take naps and I wake up feeling refreshed. I started relying on sleep meds in my late teens....I couild not fall asleep without taking something and it was getting to the point that I would have to take several doses and still I would wake up an ;hour later....it was awful because I was always exhausted. The sun affected skin on the back of my hands and my neckline area has gotten much softer and there seems to be a new layer of fat underneath. This skin had been red and irritated for years and is now like baby skin. I'm afraid I just can't thing of any more things right now except to say I feel ALIVE again...where I had been a shadow of myself for years. I had many a moment when I worried about whether this would work for me....that is only natural. It has worked and it continues to do so ...every time I doubted I remembered the "science" and realized that it just made so much sense that it woiuld have to work for me. I'm sure there are many other things that I have forgotten...the real proof is that my husband wants to do this too, after seeing what has happened to me. I hope this has helped. January 25th 09: Phase 3 meds, benicar Q6 Light, 2 days, 4hrs each day, working in an undarkened house moving furniture, very bright, wore noirs and sunscreen, hat etc. unavoidable Benadryl, colace This has been a wonderful two weeks. So far have had little effect from two days of lots of light...might have had some slight insomnia but so far very little other impact. It was great because I was able to keep up with five other very energetic people. We were getting a house ready to show and were moving furniture around and cleaning it up. My mind was working like it used to, dealing with lots of things simultaneously....just amazing. Haven't been able to multitask for a long time, but it was totally effortless the past week. I have felt happy to be alive. No problem keeping the conversation going with several people all at once, and physical exertion simultaneously. I did have 4 or 5 days out of 14 that I was achy and not so energetic, and a few days that I slept til 3pm....but that's nothing, compared to how I used to be. I am jumping for joy. I really don't know if I ever felt quite this good before...I'm starting to understand what Dr. Marshall means when he says we will reach a place we've never been before) I'm sure I'll have more setbacks and herxing but with these memories I will be able to cling to...it's fine with me. Thank you, thank you, thank you!!! March 09 I have always been blessed with beautiful skin. So I understand your concern about the breakouts that you are experiencing. I have come to see these very interesting lesiions, rashes, bumps, pimple like thingees and strange looking lumps as just another way the MP is bringing the bugs to the surface and eliminating them from the system. I don't know if you've experienced the gritty or sand-like substance that emanates from the pores of the face, yet. But don't be surprised when you do because it is another one of these cleansing things I believe. These symptoms wax and wane with the herxes...if I have a strong herx I'll have a lot of lesions and sand. These things can also itch and that can drive one mad. Two benadryl (antihistaminne tabs) can help relieve the itch.. This whole thing has really been quite interesting to observe if you are able to step back and see it. Lately when friends who haven't seen me for a while say they can't believe how young my skin looks....I am also finding a new layer of fatty substance forming at my neckline (layer beneath my skin) and this tends to make my neckline look anf feel many years younger....same thing is happening on the back of my hands. It is interesting and continues to get more so as I proceed. I'm very optimistic that I will be able to regain the time I've lost while doing the protocol. I alreay have had about 20 years lifted from my face......no body believes that I am almost 65....they all think I'm in my 40s. |
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