minocycline, rafampicin, flagyl

Tell us what you are using to treat your MS-- and how you are doing.

minocycline, rafampicin, flagyl

Postby katie45 » Tue Oct 26, 2004 4:18 pm

My first attack started with vision problems. I described it then as "a snowstorm in my field of vision. Then right arm felt weird.unco-ordinated,
parentheses. right leg dragged, bell's palsey, extreme stress, panic attacks,dizzyness,optic neuritis in left eye. The year 1984..I was 28 yr old with 2 small children. Diagnosis possible ms.

1997 another flair..right leg limp/drag, dizzy/vertigo, sleep apnea, vision blurry, muscle/joint pain Diagnosis SPms
gradually gait has worsened to the point needing a wheelchair/skooter to go more than a few steps.I had to hang on to walls and furniture to move around indoors, can't have throw rugs on my floors as they trip me. Have fallen many times.

Aug 2004 started minocycline 200 mg/day,try to drink lots of water, also periodically do lemon,water,olive oil drink. milk thistle,Alpha Lipoic acid' omega 3 capsules. Acidophilous!!

Oct.27 Will add Rafampicin 600 mg/day

Have noticed improvements in balance,spasms are definitely decreased...I can stretch my legs in bed without spasming! Hand grip is stonger,pain in finger joints gone. L'hermite's sign has lessened, On good days I can walk unassisted 50ft and raise right leg 1.5 ft off the ground from a lying position.

Hard to evaluate right now because I have been in a continuous herxheimer since beginning abx.

Oh yeah, I can stand at my kitchen counter long enough to wash,dry and put away dishes. My knees used to buckle and collapse in seconds when I tried this. Knee bends are still difficult, but on a good day...
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Postby Arron » Tue Oct 26, 2004 6:06 pm

Excellent! :) Great post, and I'm thrilled to see you're doing better. Please keep us posted... if you don't mind, you may want to describe what exactly a "continuous herxheimer reaction" means for you, since this seems to be very common with MS'ers using antibiotics.
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My discription of my personal herxheimer reaction

Postby katie45 » Tue Oct 26, 2004 9:10 pm

when on antibiotics , as I am now and have been for 3 months, I have been having a continuous "herx" In my case, this entails a flare or worsening of all my previous and current symptoms and even some new ones thrown in (for my added enjoyment I expect) Please pardon the sarcasm. I have a very heavy load of bacteria and when the bugs are killed, they give off toxins that cause my symptoms to worsen and me to feel like I have the worst flu I can imagine,complete with cold symptoms, body aches, feeling the need to cough, extreme fatigue and sleepng the day away or taking residence on the couch,broken by frequent trips to the bathroom and brain fog. ugh!

There are days when this reaction scares me to death. My mind tends to jump all over, convincing me that I'm getting worse, going to die, have a heart attack or stroke etc. etc.

I've lost weight rapidly at times thru the years when I've had " ms flairs"
and do the same when I herx from antibiotics. I have gotten very depressed at times and find myself sobbing at tv commercials! My glands in my neck get very hard, swollen and painful to the point my entire neck
and back of head is hurting, stiff.crunching when I turn it. Headaches are so familiar now I hardly notice their beginning or end (if there has been one) Believe my brain must be full of this bacteria. Then there is the flair of visual effects. seeing double,shimmering, flashes of light..I call it toxic vision for lack of a better explanation.
I'll go now and take my antibiotics lol katie
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Postby wilson » Wed Oct 27, 2004 3:06 pm

Interesting Katie. Thanks for sharing your story.

How did you find out about Minocycline?

You said.. " I have a very heavy load of bacteria and when the bugs are killed, they give off toxins that cause my symptoms to worsen.." Who told you that you have a "heavy load of bacteria"?
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Postby katie45 » Wed Oct 27, 2004 6:17 pm

I have a very good dr. and he has run many tests over the years. Tests being what they are in this Country, mine always came back saying I was fighting something , but the drs and tests could never identify a particular pathogen, only that my blood showed raised white cells/antibodies. But to what? they didn't know. Personally, I'm guessing brucellia.
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Postby SarahLonglands » Thu Oct 28, 2004 5:23 am

You know, Katie, this brings me back to a great bug-bear of mine: The infective nature of MS. There are so many resemblances to other infections, say, neuro-lyme disease, neuro-brucellosis and so on that you think the penny might have dropped by now in the minds of a few more neurologists. This of course leads on to one more thing: the need for various specialities to work more together. Most neurologists have not had to think about infection since finishing their first degree. Heaven forbid that they should have to stoop to talking to someone (equally qualified) in the path. labs!

You might well be right about brucellosis having just spent my lunch break reading up about it, but you have also to remember that when you were first diagnosed, Chlamydia pneumoniae, whether masquerading as MS, Crohn's disease, reactive arthritis or never mind what else, had not yet been recognized as a pathogen and still is very often missed. Whichever it is, though, the antibiotics you are now taking are effective against both, no matter how unpleasant the course. And I know from experience that the unpleasantness does not last forever.

Sarah
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Postby katie45 » Thu Oct 28, 2004 12:50 pm

Sarah, talk about co-incidence. I was just lying down(yet another nap), and woke up thinking my god we absolutely must clue in these neuros/doctors, head for my"puter and find your post! Two years ago I wrote a piece about being a professional (in my case a realtor) and the responsibility one has to "know the market" in whatever field one is in, and giving bad advice would indeed set one up to risk losing their liscence etc. The fact is,profesionals in the medical field don't seem to be subject to this. If brucella and others were around in 84 ( I have to research this), there is no excuse.
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Postby SarahLonglands » Fri Oct 29, 2004 3:48 am

Katie, I'm afraid you are wrong there, since medical professionals are just as likely as any others to lose their licence. Brucella was certainly known about in '84, but are you sure you have never been tested for it? You said this two postings back:

Tests being what they are in this Country, mine always came back saying I was fighting something , but the drs and tests could never identify a particular pathogen, only that my blood showed raised white cells/antibodies. But to what? they didn't know.


I could hazard a guess here.

It is much better, I would have thought, to now concentrate on recovery rather than worrying about (mis)diagnoses. :?

Take care,

Sarah.
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update

Postby katie45 » Fri Jan 14, 2005 11:58 pm

It has been 2.5 months since adding the rifampin. I expect to add flagyl feb.1. I am absolutely thrilled with my progress on this regime.

I can, for the first time in years, wiggle my toes, feel my feet on the carpet/tile.
The pain and stiffness in my fingers is gone. I can "feel" my hands.
I am able to whistle again (haven't been able to do this in 5 yrs)
I can walk (badly) around my house without holding walls/furniture
My brain feels as tho I have come out of a coma. I have woken up.
I no longer slur my words.

There has been alot of activity in my spinal cord and sciatic? nerves that continues... I've had a sore neck and glands through out these months, as well as some interesting visual exoeriences (one quite beautiful and colorful really) Alot of my spasming has stopped.The usual one I had in the right leg is gone. I have better bladder control and way less fatigue and weakness. katie
Last edited by katie45 on Sat Jan 15, 2005 12:53 am, edited 1 time in total.
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Postby katie45 » Sat Jan 15, 2005 12:23 am

Just to let you know...in'84 I was never offered a blood test. Perhaps because my initial symptoms were vision ( which prompted a visual feild test etc.) and leg drag (mri for this). They might have drawn blood if the mri hadn't shown plaques, I don't know. I do know that the first blood test I had was asked for by me in '97. during a flair of symptoms.

I think MS could hardly be called a misdiagnosis since it is really only a list of symptoms with no documented cause or cure. Until now I hope! lol
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Postby SarahLonglands » Sat Jan 15, 2005 6:08 am

.Katie,

I am so pleased to hear about your progress: this is wonderful news and really made my day! Your description of your brain feeling like it has come out of a coma is very apt. It does feel like that, doesn't it?

A slight word of warning though: it might not happen with the first course of 'flagyl' but with the second or third you might feel temporarily worse. This is quite normal if it happens. Of course you do have the option to either lower the dose or cut the five days short.

Take care,

Sarah :)
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Postby Arron » Sat Jan 15, 2005 11:39 am

Katie, we are so happy to hear that you're feeling better. Needless to say, on behalf of the community we are also all very grateful that you continue to share your experience for the benefit of others. Let us know how it continues, and our best wishes for your improving health! :)
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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update march23 2005

Postby katie45 » Wed Mar 23, 2005 2:40 am

Will be 5 months on this regime on the 27th.. I continue to improve. Balance is much better even tho the side effects of the drugs list dizziness. I still have spells of tiredness but the "heart attack" fatigue is much improved.

The strong activity that I noticed in my spine earlier seems to have ended along with the lower back pain. I still have some stiffness in the morning along with joint pain,but both of these symptoms have improved.

The swollen glands in my neck still continue but not quite as severe these days, tho the full moon is here soon and all my symptoms may increase for a few days as they usually do. At this moment I can truly say the only sensation of pain I feel is slightly sore in one elbow(even my neck feels good tonight) No spasms as I stretch both legs! No limp when I walked from the livivg room to the kitchen,hands and grip feels strong and "normal" So for tonight I'm grateful! katie
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Postby Arron » Wed Mar 23, 2005 3:19 am

fantastic update. Thank you for being so diligent and keeping the community informed, and continued wishes for good health!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby katie45 » Fri May 27, 2005 11:59 pm

wow. Seven months today..still improving after coming out of the full moon herx. It's very warm here this week and while the heat still bothers me, it has't stopped me dead as it used to. I am battling candida as well as the ms now so I have die off from both..oh joy

I'm convinced I have a viral component to this so I'm taking coconut oil and garlic. Balance has improved again and gait seems better! Have a pain in my upper right back that the antivirals seem to be effecting..No more night sweats.Palms of hands always look red..wish I knew what causes that (antibiotics?) The glands in my neck are finally normal, breathing seems much easier. I can shower without my bathseat!! (unless I'm herxing) Too warm, gotta go bye!
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