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Re: Minocycline - Nelly

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It's great to get the update on how things are with you, Nelly.

I've been a bit fearful of mino myself, largely because of a number

of reports like yours. I think you and I both have bacterial loads

from hell. How much mine has improved since starting oral

antibiotics last October, I really don't know.

Barb's explanation of the seeming paradox - more inflammation vs.

less inflammation - makes sense to me, and suggests that bacterial

loads must be brought down to a certain limit for the palliative

side of mino to be noticeable, against the background of 'herx'.

Your latest regimen sounds smart. I hope it brings you some further

progress. Sorry to hear you've had another one of THEM headaches, I

knew instantly just what you meant.

The bit about frying an egg on top of your head made me laugh out

loud. This is good, scares the neighbors and keeps them in line.

Your friend,

> Barb,

>

> What, in your opinion, can be made of incredibly INCREASED

inflammation (especially head and eyes) when on minocycline?

>

> I never experienced any reduction in pain, do you think this might

indicate that my eye/head/brain pain might not be inflammatory in

nature (sure feels like it is)?

>

> Initially when I first took doxy I experienced a brief (a couple

of days) feeling of things coming untight then massive inflammation

(absolutely unbearable).

>

> I now can take 200 or 300 mg of doxy without the punishment

( " herx? " ) but still have this major inflammation with minocycline

(even every other day), even small doses (never went into the low-

low doses, min 100 mg EOD).

>

> I am at present combining an older macrolide (spiramycine) + doxy

200 mg cycling in tini 1g for 5-6 days every 3 weeks (more or less

Wheldon's protocol). Seeing some improvements especially in sleep

patterns which appear to have improved (I sleep earlier, with less

sleeping aids and better), it made me very tired early on (been on

it for about 6 weeks about to go on my second cycle of tini, as you

know I have used tini before but second time as a part of the

Wheldon protocol). I was thinking of substituting mino 100mg for the

doxy 200 mg used in the protocol for better brain penetration but

balking at the probable unbelievable, unbearable and worrying brain

pain that it will probably trigger.

>

> BTW I have stopped the lariam (after having been on it for about 2

years!) and I have resumed taking artemisinin (Allergy research 200

mg BID, with grapefruit juice). I seem to be tolerating it a lot

better than when I first tried it 2 years ago, when it caused my

brain to overheat so much you could've cooked an egg on top of my

head and spinal area, the atovaquone and the lariam both caused

exactly the same symptoms/herx.

>

>

> BBTTWW, Bleu (and others interested) I am seeing my ID doctor next

friday and I am reviewing my diary in preparation for the

consultation: I took 2 weeks of pristinamycine 2g with tini 1g for

2 weeks (before I started on the Wheldon regimen) and the first week

was honeymoonish, I was able to do things outside every day

culminating in a visit to an endocrinologist followed by a whole

afternoon at ....IKEA of all places! (can anyone think of a heavier

afternoon of activity?) The next day I nearly died of one of THEM

headaches! Continued the tini + pristinamycin for another week but

had to give up due to persisting headache.

>

> Nelly

> [infections] Re: Minocycline - Barb,

Dura Mater

>

>

>

>

> Mino has excellent anti-microbial qualities at therapeutic

doses,

> especially for intracellular patogens, and it penetrates the

brain 10

> times better than DOxy..

> It also has many supressive qulities that have been

exstensively

> studied.. so those qualities cannot be dismissed.

>

> My suspicians are that if symptoms come back a few days after

> stopping Mino.. then it's been acting as a pain releiver.

>

> I'll find that paper I talked about earlier and post it.

> It lists an impressive array of (supressive) mechanisms for Mino

>

> Barb

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>

> It's great to get the update on how things are with you, Nelly.

>

> I've been a bit fearful of mino myself, largely because of a

number

> of reports like yours. I think you and I both have bacterial loads

> from hell. How much mine has improved since starting oral

> antibiotics last October, I really don't know.

>

> Barb's explanation of the seeming paradox - more inflammation vs.

> less inflammation - makes sense to me, and suggests that bacterial

> loads must be brought down to a certain limit for the palliative

> side of mino to be noticeable, against the background of 'herx'.

>

> Your latest regimen sounds smart. I hope it brings you some

further

> progress. Sorry to hear you've had another one of THEM headaches,

I

> knew instantly just what you meant.

>

> The bit about frying an egg on top of your head made me laugh out

> loud. This is good, scares the neighbors and keeps them in line.

>

> Your friend,

>

>

Hi and all

I had a strange reaction to Mino. I had built up to the full dose

after about 12 days but then woke one morning and found it really

difficult to breathe. My whole chest just didn't seem able to take

a normal breath.

It cleared after a while but then within 30 minutes of each dose

(started to take half the recommended dose) this inability to

breathe properly came back and it would last for hours. It was

really scary and got so bad that one evening I rang the emergency

doctor. He didn't think it was anything too much to worry about and

didn't think it connected to the Mino (I took some antihistamine and

it did help after a while).

However the next day I took an even smaller dose and this real

problem with breathing came back and it really did scare me. it

felt like there was an elephant sitting on my chest. The local

pharmacist said any reaction that came on within a very short time

of taking the drug was almost certain an allergic reaction and she

didn't think I should take anymore. I was only too happy to agree

to this and noted the patient leaflet said " breathing difficulties "

were a known side effect that should be discussed with a doctor

Doxy has never caused this sort of reaction even at 400 mg daily,

neither has Tinidazole, Flagyl, Erythromycin or any other

antibiotics I have tried. I don't have any problems at all normally

with breathing even if I have completely overdone things by over-

excercising.

Of course the engineer insisted it was .....guess what? a herx!!!

I strongly disagreed but got nowhere with him. I was not on an ARB

at the time. It occured to me then that his advice of everything

being a herx was very suspect and probably dangerous.

Pam

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