This Is MS Multiple Sclerosis Knowledge & Support Community

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Hello L, my diagnosis when I first started abx was secondary progressive and it must have been of about three years duration out of a total of nearly twenty. Te neurologist told David that he would be wise to search out nursing homes. When I started treatment I could just about walk a few feet but had an abhorrence of wheelchairs and mobility scooters.

David has treated a few people with PPMS and I guess the success rate is the same as SPMS: most people do at the very least stop progression. The people who do the best are those with still relapsing remitting but maybe only because they have less residual damage to cope with.

There are lots of people with experience of abx and MS, but they mostly end up on CPn Help rather than here. The most prominent person with PPMS is Katman, real name Rica. You could write to her either here or at CPn Help, but the last I heard she was having difficulty logging on here, so CPN might be better.

I don't know what nationality you are but you write very good English. There are people of many nationalities at CPN: for instance, there is Evita with SPMS, she is from Slovakia.

As for doctors, sometimes your own family doctor will be willing to treat, sometimes not. I can't understand those that won't. If you would like me to send you some papers published about the treatment by Charles Stratton of Vanderbilt University and my husband I will if you PM me your email address. You could show these to a doctor. Since we seem to be going the way that English is going to be the main language of academia, especially science and medicine, most doctors will have enough English to make sense of them. I heard last week the Milan University is going to teach just in English: I don't know what Italian academics think about that!

Side effects: they vary from nothing (Mackintosh) to delirium for a week or so (me, not that I remember!) For this reason it is better if you have a family member or good friend to be with you far a couple of weeks at least. If you are taking rifampicin you should have your liver tested once in a while but you don't need to take rifampicin and any doctor should know what to test for. I was never tested for anything since David would have seen if there was anything amiss.

Let me know if there is anything else you want to know.

Sarah

Liberation, There are a couple of 'sister' websites to CPn Help.org. What is your home language? It is possible we have a page in your language, or someone who can be of help.

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I am going to send you a few papers, so thankyou for sending me your email.

Since this treatment uses broad based antibiotics you might find that you are treating lots of things. Several people have been cured of interstitial cystitis, for instance, so I think there will be no conflict with your urinary problems.

Problems with doctors are different, though: There are very few neurologists who will do anything but laugh at this. I haven't seen my neurologist for years,although I do goad him with one of my paintings every year, printed as a Christmas card. Other doctors are as you say, frightened of stepping out of line, even for something that might help a person who has no other options. It makes me so mad!

Well, apart from the papers I was going to send, I also have something that was published in "Hospital Doctor" when I was quite new into treatment.

Now I had better get the papers sent to you.............Sarah

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If you are talking about the trial, flagyl was not included so they wouldn't have got a total kill of the germ. Now, patients who request it are treated wth flagyl but many patients give up because of the cost. I know this for a fact from the horse's mouth.

I was tested just once for cpn, three weeks after starting treatment. I measured just 1:64 at a time when it should have shown higher, so I reckon the best test is how you feel rather than how big your numbers are,

Sarah

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It isn't contradictory because probiotics are part of the abx regime: in fact if you don't take any you are likely to fall into trouble.

I have taken many different probiotics but probably the best is Garden of Life's Primal Defense:
http://www.gardenoflife.com/Productsfor ... fault.aspx
You must remember to take probiotics two hours apart from antibiotics, which is the time it will take for something to get through your stomach to your intestines. I tend to be rather forgetful of a lot of things but I was very strict about this and therefore had no problems at all.

Sarah

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You would know if you had any problems!!

No, with a healthy diet I should think not. Live yoghurt is probiotic as is live kefir: I have some kefir bubbling away in the kitchen at the moment: it takes three or four days to make.

Sarah

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Liberation wrote: http://www.iadvocatehealth.org/protozoa ... tion0.aspx

Thanks for posting this link. I've been following Dr Fry's suggestions for the past few months and fund them helpful.
I'm not one of his patients. I just treat myself. I started a couple of years ago with the standard Wheldon protocol and made good progress. However, I've been tweaking it based on my response to different abx.

In addition I have made further progress by incorporating other treatments into my regime. I think that abx alone will take you only that far. And indeed I have found Dr Fry's emphasis on biofilm-forming pathogens very helpful for my progress.

Liberation wrote: As I am doing the Vanderbilt protocol, I am just wondering how the two things reconcile with eachother. As far as I know antibiotics damages the bacterium flora, while FMT is rebuilding it. At first, it seems contradictory to me.

Is there any probiotics that someone can advice to take with the abx?

I have a sensitive gut and need a lot of probiotics in order to be able to stand my long-term abx treatment. I use VSL3. I also found raw sauerkraut very helpful for my digestion. I used to take kefir and it was very good but I have recently replaced it with a more complex probiotic drink called MAF878 (mix of yogurt, kefir and other) which is also supposed to stimulate macrophages eating up microbes.

Anecdote wrote:It isn't contradictory because probiotics are part of the abx regime: in fact if you don't take any you are likely to fall into trouble.

I have taken many different probiotics but probably the best is Garden of Life's Primal Defense:
http://www.gardenoflife.com/Productsfor ... fault.aspx

Thanks for the recommendation for the probiotic. Many probiotics are rated as per the number of active organisms, CFUs, that are delivered. However, this formulation does not specificy a CFU count. In contrast, Garden of Life does provide CFU information for their Primal Defense Ultra product. Do you know the CFU count for Primal Defense?

Thanks, NHE