So someone starting on the abx regime must take a leap of faith that Cpn is involved and that they are in the subset who would benefit.
Everyone doing every treatment goes on a leap of faith. If you are going to use Campath then you are taking a leap of faith that such suppression will not harm the unknown cause of MS. If it is infectious, then the long term consequences will not be so good, though right now the long terms are unknown. Don't kid yourself, traditionals are a leap of faith too.
The good thing about antibiotic treatment is it is completely reversible and reasonably benign. If you decide after treatment for a year that it is not helping you personally, you've lost that time, but nothing else, and certainly if you personally had a big exacerbation on treatment you could of course go to prednisone or whatever your doctor wanted for that. Using abx does not preclude other treatment.
But taking some immunosuppressives we see some people with profound lymphopenia at 7 years after treatment (Campath trial)or other serious consequences like cardiotoxicity (novantrone). These things are not benign nor necesarily reversible. I have had MS for 15 years. I am personally glad I did not do something like that in my first year or two out of fear for what MS might do to me because I am really glad I am here today and healthy-I have no atrophy at all by the way-, and I find it incredible that traditional medicine has gone the route of drugs with potential side effects so severe they could kill for benefits that may not have any meaning (reduced lesions? please).
Cpn may well be the infectious agent in a subset of MS, but I can't understand why it has not been found in the tissue of MS patients.
Yes it has been cultured by a number of people in MS brains, but persistent infections (one potential phase of a CPn lifecycle) are probably not culturable at all. This paper references not ony people who found CPn in MS brains but also people who did not. And as this is a peer reviewed paper, you can trust that the papers were not misquoted or misapplied as we often see in "alternative" treatments. You can also trust that every paper referenced was also peer reviewed material. IT is good, solid science. The point is that whether you personally believe it or not the scientific community at least has said this is plausible as a theory. Remember, autoimmunity is a theory too.
And it should be said that every drug offered for MS helps a "subset" I have yet to read any research that shows 100% of people were helped by anything, or that 100% of people had any feature of MS (not even oligoclonal bands are universal). For crying out loud, the much anticipated tovaxin has been tried on something like 15 people! and only half of them benefitted! It's the internet blog of a single very young (thus more healable) person whose gains have us quivering with anticipation! It's still in trial, and frankly I am more interested in tovaxin than other things as it it appears reversible (repeat injections are required every 6 months) and is seemingly benign, though efficacy is still to be determined. The long term copaxone material had a 53% drop out at the review which was 8 or 10 years. SO over those years, 53% in the trial realized it was not actually helping and they dropped it. Seems like a subset to me. How many of them took it for long years before deciding it was not for them? How often were they encouraged by their neuro to keep at it (I have been) even in the face of deterioration? Adequately trialled and tested, it still does not help everyone. SO objecting that abx helps a subset is really off topic because nothing helps everyone. Furthermore, no one knows if ANYTHING will help them til they try it no matter what it is.
This is still not a proven approach because we need blind trials to get that level of what we call proof. Anecdotally, some people have had dramatic results others less so, but IMHO everyone ought to have a chance to hear about it and try it if they feel it might be right for them since it is available now.
I think the critical thing to take away from this and to understand with the publication of this paper is that peer review has supported the theory as plausible. stuff like "but everyone gets CPn so it can't cause MS" and "But this researcher over here did not find CPn in MS brains so it can't be right" are all statements made in ignorance of the lifecycle and difficulties of dealing with CPn, ignorance that people with this expertise and specialty do not have. They know how CPn works in the body, what it does to the target cells, and how cryptic forms are unculturable, and they said, yes this makes sense as a theoretical possibility for the cause of MS.
Again, autoimmunity is just a theory too. But unlike knocking out the immune sytsem abx are safe, well tolerated, have long safety records with some ordinary monitoring any physician can do.
I am very grateful to Sarah for sharing her story. I am getting better too Bromley. More slowly, but I have more longstanding deficits as well and will need regeneration of some kind Today I walked- with no cane or anything -all over a new 1/3 acre lot we just bought to build a new house on. Then I walked on a rough trail about 1/8 mile to look at the beach again no cane no support. Someone seeing me would see a lady with a limp. That's all. I can't go more than 1/3 mile YET! without significant drop foot, but that's OK.
I really want to reiterate that though this does not "prove" antibiotics will help MS, what it does prove is that the science behind the theory is sound and it is an idea that makes sense to a group of scientists with expertise.
We can support people doing this and watch with interest to see where they go, and, if you personally feel that the drugs you have been offered have not benefitted you and for some reason want to add to that medicine antibiotics (I have taken copaxone 10 yrs too-afraid to give it up what if it's keeping me from more rapid progression as my neuro believes) you can have the security of knowing it is reasonable to talk to your doctor about it.