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Aussie Barb
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Posted: Sat Nov 6th, 2004 14:51 |
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Aussie Barb D's
This thread is sequel to Benicar Only @ Aussie Barb's Progress Report
No Headaches! Headache relief since on MP
Aussie Barb on the comeback trail Quercetin saves the day!!
Dream page 21
Sunday November 7th
Benicar: now 12 weeks 20mg now Q3h Day; 40mg @ 9pm 7H
Mino: Sept 10th to Oct 3rd: from initial dose of 1.5mg up to 12.5 mg & stop due to no NoIRs: the mino stint being @ Aussie Barb Page: 1 2 3
then continuing on Benicar Only.
Took dose # 1 x 3mg mino 5 am.
AUSSIE BARB EDIT: These Mino doses are no longer used as starting mino doses.. as they were found to be detrimental to MP progress.. which you will plainly see if you continue to read this thread..
Please see PHASE ONE MARSHALL PROTOCOL How to start the Marshall Protocol for up to date mino dosing.. beginning on Mino 25mg.. thank you...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Big John
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Posted: Sat Nov 6th, 2004 17:06 |
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Hi Barb! 
Welcome back to this part of town! Knew you were comming and saved a space for you right next to me!  So that I can tell Rennie when you misbehave.
 John
Smiling is optional!
Barb edits & says ... I be smiling then.. bein' right next to you... thanks John xox ..
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Aussie Barb
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Posted: Sat Nov 6th, 2004 17:46 |
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7.45 am.. I have been in bed to minimise the feeling of this.
My immediate & bearable symptoms to the mino dose are:
chest feels aura & shuddery but no actual shudder.
body feels shivery & weak. not cold and no actual shiver.
itching skin, more esp behind ears... 
gut inflammation has moved up a notch again..
all interesting..
9.40 am edit:
most symptoms past.
10.15 am edit:
IBS & inflammation rising. need Benicar earlier. taken.
12 MD edit:
have been resting / nap.. now chest aura only.
Last edited on Sat Nov 6th, 2004 22:06 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sat Nov 6th, 2004 23:18 |
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Thank You to All @ MP.com
Being part of this Community has been so good for Me Personally.
To have met Wonderful, Good, Intelligent People as You are
has been Truly Very Uplifting for Me.
I Thank You... Barb...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sun Nov 7th, 2004 19:14 |
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Monday November 8th 9.15am Day 2. Mino dose x 1 x 3mg yest.
Benicar: 20mg Q3h Day; 40mg @ 9pm 5H
Following on from the 12 MD edit previous posting No more herx symptoms yesterday.
I decided yesterday evening that as it was nightime, no sunlight, I could wear my NoIRs & go out for a drive with Husb. I found that I am very weak & sick to try to negotiate the *real* world .. but it was lovely to go out in the night air, windows down, slight rain, beautiful weather, wild parrots chirruping in the Palm trees in the Business area...
The inflammation woke me @ 2am for more Benicar.. was 5 h since 40mg dose. relief.
No IBS!!!!! I am amazed.. this feels a lot better.
No Q @ this point.. just seeing how I go. resting resting.. all is well. will take more mino tomorrow.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Nov 8th, 2004 18:35 |
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Tuesday November 9th 8.40am ish Day 3. Mino dose #2. took 4mg today.
Benicar: 20mg Q3h Day; 40mg @ 9pm 7H
Chest aura for hours yesterday afternoon. annoying pressure in bottom & lower pelvic last night.
Slept well. woke feeling a little better this morning. took 4mg mino 5 am. throat feels *inflamed, otherwise no extra symptoms at all since.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Tue Nov 9th, 2004 01:17 |
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continuing Tuesday November 9th 3.15pm ish Day 3. Mino dose #2. took 4mg today
I have no herx symptoms today. I feel a little better since having the mino again. so I am happy. the mino has restimulated my body.
I usually suffer from uncomfortable paralytic IBS from toxicity. A new experience for me in the last couple of days, has been the occasional feeling of my bowel feeling *relaxed*.. what a relief.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Big John
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Posted: Tue Nov 9th, 2004 21:50 |
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Yeah! Barb is doing well! Remember When Mom is happy we are all happy!
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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Aussie Barb
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Posted: Wed Nov 10th, 2004 19:11 |
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Thursday November 11th 9 am ish Day 5.
Benicar: 20mg Q3h Day; 40mg @ 9pm 6H
Mino: Sept 10th to Oct 3rd: from initial dose of 1.5mg up to 12.5 mg & stop due to no NoIRs: the mino stint being @ Aussie Barb Page: 1 2 3
then continuing on Benicar Only. Recommence Mino now day 5.
New Summary:
I have spoken about how my herxes have not been *dramatic. how the ABx seemed to be *hiding & *building a bomb, which continued to rumble for the month after no mino. seemingly having herx symptoms, flared inflammation, paralytic IBS, sick, miserable for the month, mild itching. that I have felt to be herxing or toxic & detoxing. I had a sweet body odor from all of the above. My body has always gone into killing spree on treatments. I have always been able to trust that I can read my body, but have not always been able to have the meaning confirmed till later...
MP has given me the protection of Benicar.
Dr Marshall advised me >>
"I would expect the sweet body odor to be Nitrous Oxide (NO). Your Blood Urea Nitrogen (BUN) almost always rises while the bacteria are being killed.
Sorry that the dosage-control of herx is not working very well for you at the moment.
It is common that once a new 'patch' of bacteria are 'exposed' that they keep on dying. Often the herx is less if you are taking a little minocycline, rather than none. Let's see how you go with that. You can sometimes increase the mino frequency to every 12 hours (keep the dose the same) to try and control any problematic second-day herxing. Once the herx is under control you can then gradually change back to the q48h protocol most effective for killing the bugs... " <<
& Note re emergency repair to NoIR till replacements: >
"Yes, The NoIR side pieces are brittle. I repaired my set by binding the break with a piece of fabric, which I then soaked with instant glue. When the 'splint' had set, the glasses were usable again." <<<
Since I have begun the mino 12 hour x 4mg dosing, my symptoms have definite relief for 5H & up to 7 hours after the dose. The NO is still coming from me. .
Rx mino @ 4mg x Q12H <<-special protocol not to be used by other PWC just yet .... used to DELAY the bacteria killing ... not to be aspired to.
Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Wed Nov 10th, 2004 22:17 |
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Sometimes thru the night I will have a tendency toward an *almost cramp when I stretch.
If I take the Benicar I am ok.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Lilly
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Posted: Thu Nov 11th, 2004 15:42 |
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Well, you sweet-smelling thing , I hope you're going to have a smoother time of it this time around.
My ex-husband always liked to sniff my face. I wonder if it was nitrous oxide? , lol.
Good luck, and hugs,
Lilly
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ME/CFIDS Prozac Wellbutrin Trazadone NADH.Noirs avoiding D,sun from07/04;25D=36;Ph2 restart Sep06. Ph3 03/07
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hrts4me
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Posted: Fri Nov 12th, 2004 09:50 |
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Barb says>>>
Dr Marshall advised me >>
"I would expect the sweet body odor to be Nitrous Oxide. Your Blood Urea Nitrogen (BUN) almost always rises while the bacteria are being killed.
and
Since I have begun the 12 hour mino 4mg dosing,
my symptoms have definite relief for 5H & up to 7 hours after the dose. The N2O is still coming from me. .
Lilly says>> My ex-husband always liked to sniff my face. I wonder if it was nitrous oxide?
I am confused as you folks are saying N20, Nitrous Oxide--which is laughing gas? I was concerned about Nitric Oxide (NO) being increased with the use of Benicar, in those (patients with CFS, FM, and others) that according to Pall already have too much Nitric Oxide (NO). Thus increasing NO toxicity.
hrts
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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Aussie Barb
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Posted: Fri Nov 12th, 2004 14:56 |
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hrts,
I am not a chemist. so I have edited my previous post. sorry to confuse.
The Benicar is my Protector and has been wonderful for me. Compared to any other treatment I have had without it!!! I am streets ahead.
I am still a work in progress. My body seems to have been kicked off into a killing spree which I'd have never withstood without the Benicar.
My experience is individual in that I interrupted MP when I ceased the mino when I was without NoIR (see above) ... and my body was on the killing spree.... so all my experience is *skewed* ... ie to be trying to come to any firm conclusions yet.
I have been taking the 4mg dose mino to try to *pull it up*, and was unwell, so took the 12mg dose last night to see if that would be better for me, and I have picked up overnight.
I'll write a report later. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dr Trevor Marshall
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Posted: Fri Nov 12th, 2004 15:06 |
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hrts,
You are dead right. It is fundamentally an NO release from the bacteria. BUN usually goes up pretty high until the bacterial load is worked down.
..Trevor..
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Aussie Barb
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Posted: Fri Nov 12th, 2004 16:39 |
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Saturday November 13th 6.30am ish Day 7.
Benicar: now 13 weeks 20mg Q2h day yesterday; 40mg @ 9pm 6H
On Thurs morning I wrote >"Since I have begun the 12 hour mino 4mg dosing, my symptoms have definite relief for 5H & up to 7 hours after the dose. The sweet NO odor is still coming from me."
Friday morning 12 hrs from last mino dose, I woke and thought I may have been out of the killing spree and *well enough......the odor seemed to be decreased... & maybe I can wait 48 hrs now to begin qod mino dosing... became sicker thru the day.. and I took Benicar q4h to help,*sick, terrible gut pressure, paralytic IBS, so I knew I was not thru it yet.. I took Quercetin combo (still all that I have here, no mail yet! almost 3 weeks) no relief. 8pm I took another 4 mg mino .. that was 24 hrs since the last.. no relief. so I took the remainder to make it 12 mg and went to bed. woke for my Benicar @ 6h, slept, woke ok... what to do now? I will wait and see what I think...
mino x Q12H <<-special protocol not to be used by other PWC just yet .... used to DELAY the bacteria killing ... not to be aspired to.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sat Nov 13th, 2004 04:25 |
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Saturday November 13th 6.30pm ish Day 7. continued ..
Benicar: today 40mg Q6h (ie. changed today)
Well, it has been a day and a half today.
I was thinking I may stabilise more quickly than I am. I took another 12 mg mino this morning. & will take another dose tonight.
Today I have been pushed to my very limit of bearable with the pressure in the bottom.
this afternoon, I had the antbite cramp across my right ribs and down right arm. it was painful enough to make me cry, but was still managable, I was Ok. My husband came with the Quercetin combo and >> relief!!!
the left rib muscle *lump has been burning again. and the gut inflammation is having a wonderful time.
At this moment I can feel all these things still around, some more in the shadows, but am feeling quite bright otherwise at last > under the influence of the Quercetin I expect.
Dr Marshall has advised me > "Just keep mino 12mg x 12 hrly until you are stable, and then try to lengthen it to 24 hrs and eventually 48 hours. At your own pace, no hurry. Is important you get better, so you too can experience what it feels like " <<<
..Trevor..
so I will relax and to not be thinking I need to be hurrying to be *normal* ... and ahh sigh it is easier to divide the mino only this far..
mino @ 12mg x Q12H <<-special protocol not to be used by other PWC just yet .... used to DELAY the bacteria killing ... not to be aspired to.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Sun Nov 14th, 2004 02:54 |
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Sunday November 14th 5 pm ish Day 8
Benicar: 40mg Q6h
Ahhh a better day for me today! Continuing the mino 12mg x 12 hrly. I can feel the need of the mino getting close to the time.
slept so well last night. woke feeling better, but feeling sore all over.. no wonder after yesterday! I'm still physically weak but mentally alert, as in very...
gut inflammation is *there, but not any real problem. no IBS... phew... not *sick.
all skin itching some and still sweet nitrous oxide odor. so will continue like this yet.
all D avoidance is in place diligently, NoIRs etc.. of course ..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dr Trevor Marshall
Research Team
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Posted: Sun Nov 14th, 2004 10:05 |
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Barb,
Yes, isn't it amazing how the mino loses its ability to kill bugs, and becomes palliative, as the doses are moved closer together...
It explains why the studies of mino in RA achieved only moderate success - they were using 100mg every 12 hours. But even then there was a significant remission rate at 4 years...
http://tinyurl.com/5w7ce
I would stabilize where you are for a while, and then try to start spacing out the mino doses again so that you can really hit those bacterial colonies...
..Trevor..
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Aussie Barb
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Posted: Sun Nov 14th, 2004 21:43 |
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Thank you Trevor.
Today the whole of body itch continues....presumably still from the BUN.... mild enough, bearable... so that I'm not seriously scratching....
I am quite happy taking my usual one day at a time.. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Mon Nov 15th, 2004 03:35 |
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Monday November 15th 5.35 pm ish Day 9 continued...
I slept well last night. took my Benicar @6h
Today as I said in the previous post: itching has stepped up a little. but is bearable. not actually scratching.
I don't feel *well, feel doughy, fatigued, sickish. can feel gut inflammation. & left rib muscle burns a little.
Getting close to the 12 hr mark> mino dose time, I start going downhill, so I am not thinking of any changes to this mino 12mg x Q12H routine just yet with all this going on.
not as good a day as yesterday, but I expect it is going to take time to pull me up after a month of runaway herx. and I know that my body is working so hard.. It isn't easy, but I am so thankful for Benicar, for MP. it cuts the suffering right down.. & no headaches..
mino @ 12mg x Q12H <<-special protocol not to be used by other PWC just yet .... used to DELAY the bacteria killing ... not to be aspired to.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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