LJM antibiotic log/start

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

LJM antibiotic log/start

Postby ljm » Mon Apr 25, 2005 3:00 pm

I have also started on antibiotics and hope to periodically post the results.

I had a flu in Jan/05 that developed into a wierd neurological symptoms including numb hands, arms and torso and neck: extreme weakness and imbalance: hyperactive reflexes. A spinal tap showed oligoclonal banding and I'm waiting for an MRI. I've been advised the event was either transitory myelitis or MS.

I read David Wheldon's regime and spoke to Charles Stratton at Vanderbilt. My Canadian general practitioner agreed to prescribe the following:
(1) Azithromycine, 250 mg, three days a week
(2) Minocycline, 100 mg 2x per day, every day
(3) Pulses of Metronidazole (Flagyl), 500 mg 2 x per day

I have been on Azithromycine and Minocycline for two weeks at this point and will be pulsing with Flagyl in another couple of weeks.

Regarding side affects, since starting the antibiotics I have felt mildly to moderately stoned. Its particularly marked on the Azithromycine days. Also, I'm not sleeping well, lots of wakenings. None of this is particularly troublesome, just rather strange. I'm taking all the stuff that Sarah recommended, the antioxidents and charcoal etc.

Regarding benefits, the lingering symptoms from my initial "event" were tingling and weak hands and legs. These symptoms are gradually diminishing, but I don't know if its the antibiotics. I also have been doing extensive vitamin and mineral suppliments, a dairy and gluten free diet, and daily weight and balance training. So all of those may have had an impact as well.

I guess I'll post an update in a couple more weeks, when I start the Flagyl.
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Postby Anecdote » Tue Apr 26, 2005 7:32 am

Hello Lizz,

I'm glad you managed to get this started by phoning Charles Stratton! :wink:
You are very wise to get things moving as quickly as possible rather than waiting for what might be an interminable time to get a definate diagnosis and maybe more damage in the meantime. If it is RRMS the initial symptoms might well diminish or even go away completely at first, they did with me for a number of years, before eventually coming back with a vengeance.

Good luck,

Sarah :)
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SHINGLES?? What the heck??

Postby ljm » Fri May 06, 2005 1:05 pm

I've just confirmed I have shingles. I've never had it before and its rather unpleasant. It requires immediate antiviral treatment (within 48 hours) to tackle effectively. My GP said its often linked to run-down condition or weakened immune system. What the heck?? I had been feeling particularly vigorous. I'm hoping if Sarah has any idea of whether the antibiotics I've been taking could have contributed she'll add a post!!!
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Re: SHINGLES?? What the heck??

Postby Daunted » Fri May 06, 2005 4:12 pm

Since beginning the antibiotics, several times it has seemed that my immune system was taxed. I developed sores in the corner of my mouth and a few other unpleasant things. Remember that the bacteriostatic antibiotics give your immune system plenty to do!

So sorry to hear you're dealing with shingles, though, that's no fun.
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Sorry, but how do antibiotics affect immune??

Postby ljm » Fri May 06, 2005 4:22 pm

It seemed too coincidental to get shingles after starting the antibiotics...but why would antibiotics run down my immune system?
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Postby Anecdote » Fri May 06, 2005 4:28 pm

And along comes Sarah, on her way to bed: well it is way gone midnight!

Of course, shingles are related to cold sores, which tend to attack when you are run down, apart from the fact that as Daunted said, the bacteriostatic antibiotics are keeping your immune system well occupied.

Shingles certainly are no fun, so I'm sorry to hear about that, although it sounds as though your GP has got it well in hand. :(
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Postby carolew » Sat May 07, 2005 5:13 pm

Just a little correction: shingles is a re-activation of the varicella virus that causes chicken pox. :wink:
Good luck with the antibiotics.. Carole
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Postby Anecdote » Sun May 08, 2005 4:28 am

Quite right, Carole, but, for 'varicella' read 'herpes zoster' and for cold sores, 'herpes simplex', both members of the herpes virus family and both neurotropic, therefore I was correct in saying that shingles are related to cold sores. 8O

Sarah
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Postby carolew » Sun May 08, 2005 10:25 am

You are right too. I just didn't want people to think that one can get shingles because one has cold sores. Carole
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New Update on LJM Antibiotic Log

Postby ljm » Fri Jun 10, 2005 11:06 am

I've been on the ABX regimen for about two months: minocycline and azithromycine: not yet started a flagyl pulse.

The side effects have been (a) feeling stoned out, which stopped after a couple of weeks (b) getting shingles, which was unpleasant, but stopped after a couple of weeks, and may be unrelated, although its a bit unusual.

A possible benefit is that I had my first MRI about six weeks into the regimen and though it showed I've got lots of lesions, none were gladolinium enhancing.

I have to say, however, that I think I'm going downhill. I'm more focused, able to put in long work hours, have started to drive again, still working out and running. But I'm starting to get prickles and cramps in my legs and feet, which I hadn't had before.

Its possible that part of this is emotional, since, until the MRI, there was no official dx. And the lesion load that showed up was just pretty heavy. I now have the rather uncomfortable idea that I've been walking around with quite a bit less upstairs than I had assumed. Thats more than enough to make me feel prickly.

Because there were no enhancing lesions I'm not eligible for any CRABs (in Canada at least).

I'm thinking of trying LDN. Not giving up the ABX regimen, but considering that maybe given extent of the damage a few months would be worthwhile, help me sort of stabilize.

I'm also thinking of getting a second opinion in the US somewhere on whether it would be worthwhile to start CRABS, sell my retirement funds, just pay the whole freakin cost myself until I go under one way or another.
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Postby Anecdote » Fri Jun 10, 2005 11:54 am

Lizz,

For goodness sake, don't worry like this. Until I started to get feeling back in my feet, I didn't get any of the prickles and cramps which you describe, but after was another matter! Just focus on the fact that none of the lesions were enhancing, which means they had developed before you started on the antibiotics. They will fade in time, mine are fading still, nearly two years on. Also the fact that you are able to work long hours, drive, work out and run! My goodness, I wish I could run, hope I will again soon: I used to be a cross country runner many moons ago. Don't waste your money on CRABS, they might reduce the number of relapses someone has, but that is all. Likewise with the LDN: well, that won't cost so much, but you really don't need to, honestly.

Keep your pension funds intact, for goodness sake!

I would hazard a guess that all this is emotional: you work so hard that you haven't had much time to really think about everything since the MRI scan, and now it has hit home, which is understandable. My goodness, you should have seen my first scan, it was frightening, but luckily for my state of mind, I didn't get to see it until I was shown it alongside the second scan, showing the enormous improvements, but that night I cried because I had no idea that all this was going on inside my head for all those years. But please remember that two years ago, my right arm was completely useless, but now I can do this:

Sarah :)

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Postby dignan » Fri Jun 10, 2005 12:12 pm

Just a comment on CRAB eligibility in Canada. I'm no expert, but I'm Canadian. I don't think gadolinium enhancement is an official criteria in any province.
http://www.mssociety.ca/en/research/pdf ... -mar05.pdf)

The other thing I found (Canadian) on MRI criteria that mentions gadolinium:
http://www.ices.on.ca/informed/periodic ... p10410.pdf

Anyhow, I wonder if there's any way you can get a second opinion in Canada as it would save you a few thousand bucks...
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thanks to both of you

Postby ljm » Fri Jun 10, 2005 1:10 pm

Sarah, the painting was a truly virtuoso demonstration of your strength and recovery, as well as being wonderfully beautiful and I hope you will not mind that I have saved the image. As always you are very encouraging. Maybe a flagyl pulse will distract me. By the way, does one take all three drugs for the pulse days? I could put my attention to that.

Dignan, I am currently in BC which requires two clinical incidents, but the information you provided confirmed a rumor I heard that there are different criteria in Quebec (where, coincidentally, I lived until recently, and would by no means regret returning). I appreciate your reply.
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Postby Anecdote » Fri Jun 10, 2005 3:48 pm

Lizz, yes, you take all three drugs for those days. You might feel nothing much at all first time round, but the second or third time might be different. However, you are almost certain to feel sad, because that seems to happen to everyone, no matter what they are taking it for, even my GP. Well, no, she felt more nauseous! Email me whenever you want, I don't mind. I'd sooner that than you worry without need. I can send you a more high resolution image if you would like. :wink:
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Postby dignan » Fri Jun 10, 2005 3:59 pm

I'm in BC too. With relapses, you are the only one who knows what you're feeling. I found my neurologist (at UBC) to be pretty willing to get me on therapy. I went to my appointment thinking I had only had one episode, but he felt that one of the other experiences that seemed minor to me qualified as a relapse. So I'm not saying you've had a second episode, but I was a bit surprised at what qualified as my second relapse, maybe you would be too...

I guess this is all a bit OT since this thread is about your antibiotic regimen, but I think if you decide you must get on a CRAB, you shouldn't have to leave the country to do it.
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