This Is MS Multiple Sclerosis Knowledge & Support Community

Sarah,

You have been an inspiration to many who use this site. There appears to be a large number of people who are following the anti-biotic regime (either your husband's regime or another similar regime). Many have now been on the regime for a reasonable amount of time (6 months plus and many for more). The results that have been reported are generally encouraging (although those who had not seen good results may not bother posting).

Do you (or your husband) have any feel for the numbers following the Wheldon regime and any sense of the success rate being experienced? Are many seeing the sort of success that you have seen?

If there is a weight of evidence that this approach is having good results (it's one of the few approaches that is linked to a possible cause), then how can this be transferred to the wider MS community? I am conscious that this site has just over 2,000 members, but that worldwide there are some 2.5 million people with MS. Are there any plans to pull some numbers together (numbers on the regime / percentage showing improvement etc) to justify a formal trial?

Bromley

To my knowledge, the only realistic trials in the near future are:

1) The very small ongoing minocycline trial which is following patients for 36 months.

2) The Copaxone+Minocycline trial, which is also ongoing.

(Neither of these are trials of the full regimen nor do they acknowledge the role of the anti-bacterial activity of the minocycline).

3) I suspect they may do a trial shortly comparing Interferons+Antibiotics with Interferons alone. The problems that they ran into as far as recruitment (with the last trial at Vanderbilt) could be avoided and this might reap some really nice data, especially if they had a reasonable follow-up period.

I for one am wondering how those four patients who were on the anti-chlamydial therapy at Vanderbilt are doing! Especially the 3 that were CPn free at the end.

Bromley,

I know that there are far more people than have posted on this site who are either using the Vanderbilt protocol or David's. I also know that to do it properly one has to be on one or the other for much more than six months, because even if one's CSF shows as having been cleared, even if there is just one lone pathogen lurking somewhere, it might re-emerge and leap into action. I was on David's protocol for a year and even now am taking booster doses every two months. At the moment, it is debatable how long these should continue for.

Daunted is correct about the trials: there will be another one at some point organised by Vanderbilt, but they really need the ability to do something longer, involving flagyl. The trouble is, there is no money to be made from out of patent antibiotics. Or any antibiotics come to that. Couple this with the fact that only a tiny percentage of neurologists give any serious thought to MS as being caused by an infection and things fade more and more into the future.......................

As to the success rate of David's regime, I am the only person who has been doing it for two years. I would say that it has been a success with me, but we will have to wait for my next MRI, next month, to have positive evidence. Robin, as you know, has given up and moved over to the campath trial, which he feels at the moment is proving successful. Other people have stopped because they wanted instant results. Most people are happy to continue, though.

As far as transferring to the wider MS community, as more and more GPs become alerted to the treatment, it will perhaps come from them rather than the neurologists. Also, as you might have seen on this site just over the last few days, more physicians with the disease and with partners with the disease will certainly raise awareness. At the moment I can't put anything on the MS societies forum without having it removed!

As Ram Sriram from Vanderbilt said to my husband a few months ago, "We have just got to fight this from the trenches." I hope I am helping in this.

Sarah

I just read Sarah latest reply and wonder what repercussions my latest antics will have, if any. I have written a careful description of my results, but not my protocal, so far and posted it on a common site here in the States. The last thing I would want to do in life is give false hope to anyone. I suppose it will be deleted if I overstepped . I am somewhat naive, I suppose, in that I really believe that all with this grim, dismal thing should know what is out there. My fervent wish is to make as many waves as possible without doing damage. After having been through the agony of acceptance it is truly the dawn of a new and very precious day.

I have made posts on antibiotics for MS at Braintalk and a couple other MS forums. Generally people are dismissive but some are indeed interested; the most common response to is to only undergo this treatment if you have a positive test for CPn, which is difficult or impossible for most of us to arrange.

This is the only board I have visited where complex discussions of the antibiotic treatment take place.

I think this will come from the ground up...I think Sarah's contribution here is very impacting, and this board as a whole. When you look at the number of views these posts have, you can see that for every person that posts, there are hundreds that do not. Surely some of them are trying this treatment as a result.

I just read Sarah latest reply and wonder what repercussions my latest antics will have, if any. I have written a careful description of my results, but not my protocol, so far and posted it on a common site here in the States. The last thing I would want to do in life is give false hope to anyone.

I shouldn't worry, the British MS society is a law unto itself. The forum is mainly run by people with MS who don't want to think further than they think they need to. If they are convinced that MS is a manageable auto-immune disease that is what they will think. Also there are people in all walks of life who just can't do anything unless it has been verified right, left and centre.

Many people have found their way to David's site without ever looking at a forum. I never had until not much more than a year ago. So don't worry. Many people are, unbelievably, happy with the way things are, some say MS is the best thing that ever happened to them, but gradually people who think differently will get to hear about other ideas. A year ago I wanted to change the world; well, I still do, really, but know that realistically I am going to have to content myself with just part of the world.

We will just have to get on and 'fight it from the trenches', whilst not leaving site of the fact that we have other things to do as well!

Sarah