This Is MS Multiple Sclerosis Knowledge & Support Community

Robbie, don't be disappointed if you don't see a reduction in lesions, but just be grateful if you see no increase. You will probably have many old lesions which never change but you can work around those. My brain still looks rather addled.

Sarah

Thanks Sarah when i think about all the damage done to me over the last 18 years i can't help but think what if i started this then, would i be in a wheelchair?. It's hard to thnk that way but at the same time it's hard not to. One day at a time.

You probably wouldn't but Cpn was only discovered to be a pathogen in the late eighties and it took several years after that before people started to investigate its involvement with MS. I am not sure about lyme, but I think the timescale is similar. So I guess both of us have to realise that we couldn't have done things any sooner. You know, when I finished my MA I was planning to do a course in art restoration then go to Italy to help restore old gesso paintings, maybe Michelangelo's work in the Sistine Chapel........... None of this happened and one could say luckily because I might well have fallen from the scaffolding and killed myself before I hardly knew what was wrong with me..............Sarah

I was just wondering about some reading i've been doing here and at other sites about how long people take antibiotics. I read that a lady on IV antibiotics didn't really notice any significant inprovments until after 4 months of being on the IV(for lyme) and others that have been taking oral antibiotics for years and are still improving(for CPN). Is this because whatever you are trying to kill just reacts differenty depending on the individual.My doctor said that the IV i take could be as long as 8 months if he sees an inprovement or at least a stop in progression of my brain lesions.How does anyone know when to stop?. You really don't know much except how you felt.before and after the antibiotics. Just crazy stuff!

I think a lot is down to the individual: their metabolism and so on. For instance I have a very fast metabolism, which is why I am on the skinny side and I noticed improvements very quickly. I have never had anything intravenously. Talking about Cpn, Charles Stratton and Ram Sriram from Vanderbilt tend to advise taking antibiotics for four or five years full time to make sure that everything is cleared. All in all I took abx for four years but only one year of that was full time. I stopped having reactions to the abx way before four years but I was frightened to stop sooner in case the MS started progressing again.

You are right, it is crazy, but I think how you felt before and how you feel now is a guideline, but not entirely: I know someone who stopped after only nine months because he says he felt so well and he thought that taking abx for too long wasn't a good thing. A year later he had a stroke at the age of 35.

Sarah

Saw my doctor yesterday and he is switching the Flagyl to Azithromycin and see if i can tolerate that any better. Over all he is happy with the improvements he sees and says it's still early. The up and downs are really hard on the mind as well as the body so just got to keep plugging along.

Azithromycin is a macrolide which by and large is not a killing antibiotic but it stops the pathogen from reproducing. Later on flagyl does most of the killing. If you print out this pdf file and give it to your doctor or email him the link, he will see the reasoning.................Sarah

http://www.davidwheldon.co.uk/ms-treatment.pdf

Thanks Sarah for the document, i am taking both the Azithromycin and the Flagyl now, so will see how that goes. Had an MRI last week,i am hoping there will be some change or just the stop of progression.

I'll keep my fingers crossed!! Sarah

Went to my neurologist today and she did her tests and at the end of our 15 minute visit she said "you seem to be in a holding pattern" I was realy glad to hear her say that.

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Gosh, happy or what?

Sarah

Got the results of my last MRI it showed two new lesions and two that had disappeared. This MRI is being compared to one i had in August, 2008 . I started the full antibiotic treatment in August, 2010 so it is hard to compare these two MRI's.I am going to continue with antibiotics and another MRI down the road which will be a little more telling.

keep the faith...God is good!!! May you see many blessings in your future!!!!

Now, that looks promising..........Sarah