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Aussie Barb
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Posted: Mon Nov 15th, 2004 22:18 |
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Tuesday November 16th 12.20 pm ish Day 10
Benicar: 40mg Q4h (changed)
I slept from 9pm till 1.30am. woke, changed to having Benicar Q4H and have been better today. slept this morning. nice.
less itch and inflammation than yesterday. not *sick. I continue to be unwell enough that I am not doing anything else apart from being on the Board and on the bed.
mino @ 12mg x Q12H <<-special protocol not to be used by other PWC just yet... used to DELAY the bacteria killing ... not to be aspired to.
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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 17th, 2004 03:10 |
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Wednesday November 17th 5 pm ish Day 11
Benicar: 40mg Q4h
slept well .. woke 4.30am needing mino @ 12hrs
less itch and more inflammation than yesterday. *sick today. have to lean right back in my chair a lot of the time to be comfortable.
I don't know of any change of circumstance that makes the difference from 1 day to the next..
Today I decided to try to experiment with the Pure Quercetin:
Took 1 x Q capsule 2pm. felt a *coolness go thru the inflamed gut. but will wait & see more yet.. seems to be some relief. but no-one else would want to experience this gut just the same. the IBS pressure in the bottom is relieving at the moment also. when normally it would be escalating as mino time drew near. & it is past 12hrs already.
This afternoon I am seeing if I can extend the mino yet? I am wanting to get on the *real* MP asap...
mino @ 12mg 4.30am <<-special protocol not to be used by other PWC just yet
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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 17th, 2004 16:45 |
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Thursday November 18th 6.45am ish Day 12
Benicar: 40mg Q4h Q5 ½ night
Taking:
Quercetin Q6H to try to assist mino spacing. mino 12mg dose.
mino extending; was 16 hours last night with the help of the Q. 16 hours till today's mino dose will be 12.30pm... so the aim will be to try to do that or a little more if symptoms allow..
I will rest as much as I can to try to help this along. I want to get to the kapow herxing dose of mino, but will be guided by my body as to how and when to do what to get there.
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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 17th, 2004 20:41 |
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Thursday continued.. 11 am ish
I am finding that taking the mino like this is very supportive of my body.. in that also, I am depending far less or not at all on my Natural Progesterone to uphold me..
Also I have found that taking Quercetin is helping me to get from one mino dose to the next.. otherwise I was going downhill waiting for the next dose to be due..
Just now I was feeling weak and shaky and thought to take my Quercetin> @ 5hrs... w relief..
so far today I am looking ok to get to the goal of 12.30pm for the mino. that will be 16 hrs apart for this 24 hrs. ie. my first extension from Q12hrly.
this transition as Rx by Dr Marshall in my circumstances, is working well for me...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Nov 18th, 2004 17:22 |
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Friday November 19th 6.45am ish Day 13
I have moved to the Full Protocol + Quercetin Reports today.
Benicar: 40mg Q4h Q6h last night
slept fairly well. woke this morning with the world swinging around. I needed my Benicar, some food, Quercetin, and to get focused, on the computer.
the mino extending: yesterday I went past the 16 hrs and watched what happened.. toward 17 hrs symptoms started to rise. pressure in the bottom. so took mino 12 mg. is 18 hrs right now - spinning > am taking mino to see what happens.
the quercetin qid is helping me quell symptoms and so extend the dosing.
the gut inflammation is present but not really acute as it was. *antbite* on left ribs this morning.
* since all this is going on, I have not been able to bear the thought of eating protein foods much, esp not chicken. am desiring lighter foods. I desire some beef. < I am interpreting this change as being from the higher BUN. the itching has decreased some and the sweet nitrous oxide body odor may be decreasing.
so far I have not had / needed NPOS for 2 days. ie. no depression / misery sx. pressure in bottom now relieved by Q or mino.
In doing all this I am reading a *new *book.. the book is me.. and I have to wait to see what is on the next page.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Nov 18th, 2004 17:58 |
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re: "is 18 hrs right now - spinning > am taking 12mg mino to see what happens."
half hour later, > am experiencing relief.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Reenie
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Posted: Thu Nov 18th, 2004 18:54 |
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Barb,
It sounds like you were herxing. Maybe you can't space out the mino yet. 
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Aussie Barb
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Posted: Thu Nov 18th, 2004 19:04 |
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thanks Reenie,
the previous mino trip is looking now to have been one long herx on the low dose mino .. and is why I couldn't fathom where it began & ended.. it didn't..
This schedule is new ground so I am experimenting my way along and cutting a path for others.. I am Ok with pushing and trying to test it all out.. is very interesting.
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Fri Nov 19th, 2004 00:03 |
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Friday November 19th 2pm ish Day 13 / mino; is day 6 my special schedule 12 x 12 used to control my herx. to delay bacteria killing.
I am beginning to feel some relief today.. something is lifting.. at last. I feel some Hope.
going forward with mino 12mg x Q12H dosing today. +Q+B
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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 21st, 2004 00:14 |
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Sunday November 21st 2.15pm ish Day 8 my special schedule 12 x 12 used to control my herx. to delay bacteria killing.
mino 12mg x Q12H +Q+B
Benicar: 40mg Q4h day Q6h night
sleeping well.
I am still having transient times of vertigo. (the whole room swings around) I'm not sure why. we put a new blind in the house to make it even dimmer, - with that + as the herxing is cut down... I wonder if, as the 1,25D drops more this has precipitated it ? This would tend to show exactly how sensitive one can be to so very little change in *light* + while under the effects of herxing.
I am waiting for it to run it's course and go. Taking the Benicar Q4H; and the Quercetin calls me about Q5H; gives me symptom relief. and I will continue the mino 12 mg x Q12H as is too whilever this continues. I am very happy to have all these MP meds to give me function thru this. no IBS !!!
I am tired. resting sleeping. gut inflammation is still present.. but not acute.. it would be acute in anyone not accustomed to it though.
I was expecting that a few days of 12 x 12 would see me on my way... I am content to follow my body in what I need to do.
Best to us all ..
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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 22nd, 2004 18:10 |
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Tuesday November 23rd 8.10am am ish Day 10 my special schedule 12 x 12 used to control my herx. to delay bacteria killing.
mino 12mg x Q12H +Q+B
Benicar: 40mg Q4h day Q6h night: Quercetin Q5H
Today will be day 10 of mino 12 x 12. I was expecting to be able to extend the dosing before this.. I am impatient to *get on..
I am feeling definitely better than before... but fairly ordinary still. not well. ick. still only able to eat light foods. still itching some, particularly lower R leg even has bumps. gut inflammation erk.
had a few days of vertigo.... still some transient bouts yesterday.. which has been relieved by the mino or the Benicar or the Q... whichever one I took was a help, in it's turn.
Today so far 8am I have no vertigo so may now be able to extend mino dosing?
I'm wondering if I may take the 25 mg daily.. starting this morning? as a first step to extending?? or to try to shock my body??
Dr Marshall says >" Yes, the 25mg once a day is worth trying. I never took anything less than 100mg q48h, even though it hurt like hell somedays, but other days were good. It is only the CFS'ers that have seduced us into altering the dosage regime which we know worked so well.
Don't push it too hard, though. "<<<
..Trevor..
Hmm.. Dr M saying "Don't push it too hard, though." makes me think to be patient...
I will do the mino 12 mg x Q12H today again & then reassess.
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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 22nd, 2004 22:26 |
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continued ... Tuesday November 23rd 12.25pm ish Day 10 my special schedule 12 x 12 used to control my herx. to delay bacteria killing.
mino 12mg x Q12H Benicar: 40mg Q4h day Q6h night: Quercetin Q5H
In the past, my Immune System has been very easily started. I feel unwell enough to have a high 1,25D, and I'm taking the Benicar Q4H and diligently cave dwelling.. Quercetin Q5H. transient vertigo. I have that perception of hot pepperish in my mouth nose throat again, hot *inside me... and icy on the outside. is only perception so bearable.
too unwell to risk looking for more herxing. so I think I had better be patient as I am yet..
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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 24th, 2004 15:03 |
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Wednesday took mino 12mg in am.. Began mino 25mg Q24H pm +Q+B
Thursday November 25th 5am ish is Day 12 my special schedule used to control my herx. to delay bacteria killing.
Benicar: 40mg Q4h day Q6h night: Quercetin Q5H
I have had a couple of really rough days physically mentally emotionally. Have felt to be in the perpetual low dosage herxing again.. My Inner Wisdom was telling me to take 25mg mino, but caution was telling me I was too sick to take the risk of becoming sicker... but I was becoming sicker, so I had to do something.
I took the 25mg mino last night. my brain fog / head started to clear within an hour and I could plainly see why this has to be better. I still have the vertigo transiently when meds are due, which is relieved by taking the Benicar or the Quercetin whichever is due. but I am feeling better this morning than I was.
Dr Marshall says >
"Don't go to a higher dose than 25mg just yet, the next thing is to stretch the dosage out to 48 hourly. It might take some time (weeks) to get to that point."
..Trevor..
weeks 
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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 24th, 2004 17:51 |
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the vertigo:
while sitting or lying still: it is swing swing.. and I can handle that much ok.
it is exacerbated by turning over in bed or any fast movements.
the room / ceiling swings around wump! and back wump!.
I have to hold onto my head, shut eyes, and usually cry out, and be still till it passes.
It is not a light symptom cos I am diligently cave bound and wearing 10% noirs fully whilever I am off the bed except to shower 
because all 3 meds (mino B Q ) relieve it in their turn, I am thinking it has to be disease symptom via herx.. I had it milder than this in earlier days of CFS.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Nov 25th, 2004 01:13 |
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Began mino 25mg Q24H last night +Q+B
continued >Thursday November 25th 3.15pm ish is Day 12 my special schedule used to control my herx. to delay bacteria killing.
Benicar: 40mg Q4h day Q6h night: Quercetin Q5H
I have slept rested most of this morning.
I began to feel weak 2pm. I thought "this will be when the mino saturation is lowering" took Quercetin.. relief. >>
then my head has cleared I am feeling better.
No More Vertigo!!! the 25mg mino Daily is helping.
I still have a raised red rash on my right shin and mild itching all over body.
gut inflammation is less bothersome.
I am excited about this turn for the better.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Thu Nov 25th, 2004 15:37 |
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Friday November 26th 5.40am ish is Day 2 of mino @ 25mg daily my special schedule used to control my herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 40mg Q4h day Q6h night: Quercetin will see..
Close to the mino due time I was needing it.. bloating etc rearing again.
I slept well.
I have woken feeling somewhat like a Human Being!!!!!
25mg mino Daily is a hit for me!!!
I'm not so reliant on the Quercetin to drag me along now either..
Raised itchy rash on lower right shin and mild body itching persists.
I am a little weak, but feel much better otherwise than I have for so long .
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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Posted: Fri Nov 26th, 2004 23:48 |
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Saturday November 27th 1.45pm ish is Day 3 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: changing out to Q5h to Q6H: 40mg Qh day Q6h night:
Changes since mino 25mg daily:
Body & brain feel *released* .. a relief.
gut inflammation *there* but much relieved. stomach not tight distended as has been. not *as**sick*
no vertigo!!
sniffy sneezy runny nose now when getting close to Benicar due time
able to extend Benicar dosing again from Q4H
Heart / chest feels *heavy*
R shin itchy lumps still present (have never been prone to *rashes before)
sweet nitrous oxide body odor very present.
tired sleeping very much.
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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 27th, 2004 05:35 |
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continued ... Saturday November 27th 7.35pm ish is Day 3 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 40mg Q4h day Q6h night: couldn't extend the Benicar without becoming sicker & depressed.
vertigo when mino dose due. relieved by mino.
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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 28th, 2004 19:09 |
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Monday November 29th 9am ish is Day 5 of mino @ 25mg daily schedule used to control herx. to delay bacteria killing. Dr M says it might take some time (weeks) for me to get to that point of having extended the doses to Q48H."
Benicar: 40mg Q4h day Q6h night:
mino 25mg daily: continuing.
In MP, feeling Bad is Good...
but feeling too bad is not too good..
I am feeling bad so that is good.. and I am needing to sleep rest a lot. after I am up for awhile I start to feel *sick*.. that is when I need to lie down again.. = )
I'm not miserable emotionally, so I can manage. best to all of us..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Tami
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Posted: Mon Nov 29th, 2004 15:07 |
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Barb, Just read through your posts. Want to tell you it's so good to have so many of my oh so difficult to describe symtoms described perfectly by you. Thanks for the time you spend posting. Thanks for giving me words to describe what my body feels like.
Best Wishes, Tami
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