This Is MS Multiple Sclerosis Community: Knowledge & Support

Ok, I'm new to this site, so I don't presume I can actually say much that would be of interest but here goes.

I recently checked Vanderbilt site and noted that S. Sriram will shortly be publishing the results of his pilot trial of antibiotics in RR MS.

So I called him. Of course he didn't answer, but the woman who did was friendly. I said I was SO looking forward to the publication because Sriram's work was SO world renowned and would undoubtably lead to new treatment protocols. She agreed and said that several Vanderbilt patients were now following the antibiotic regime prescribed in the study.

Doesn't that suggest that the study had positive results? I'm dogging the office of the Journal of Neurolog Sciences to try to find publishing date, but I understand it could be a few months. Does anyone else have any other idea on how to find out results, or what antibiotic combination was used?

I just feel this is a pretty intriguing llne of inquiry. I just want to get the damn antibiotics in short. Should I just try to become an outpatient of the Vanderbilt clinic? Its a few thousand miles away but wouldn't it be worth it if this is front line stuff?

Again, please forgive me as a newbie if this post seems ridiculous.

Hi ljm

If you're based in the UK I would recommend visiting this web address:

http://www.davidwheldon.co.uk/ms_treatment

You'll also find lots of good info under the "Regimens" heading on this site.

David is a consultant microbiologist at Bedford Hospital who's treating his wife, Sarah, who was diagnosed with SPMS. He's also helping me and other members of this community.

I just started treatment a few days ago but already my balance has improved and my head is much clearer.

Good luck.

Jim.

Thanks Jim, and I hope you hd a good journey back!

But for all those in the USA, read all Daunted's posts because he is following the Vanderbilt protocol after seeing Dr. M. Powell in Sacramento. Vanderbilt will also forward the protocol to any medical practitioner who is interested.

The two protocols are slightly different, but the effect is the same. We just have access to roxithromycin in Europe, which is not available in the USA. It doesn't really matter in the long run.

What does matter is that both protocols work, so long as you have not had progressive disease for too long. Luckily I hadn't,at about three years, but it is taking me slightly longer to get everything back than it would if I had started sooner.

Sarah (she of posting above!)
.

Hi Sarah

I enjoyed meeting with David but I can't say I had a good journey back. They're doing some building work at Luton Airport and there are a lot of tricky temporary surfaces. However, I made it intact and had timed things to perfection. If my legs and balance were as good then as they are now it would have been much easier.

I can't believe the difference three doses of Doxycycline has made to my walking ability. Were your initial experiences similar?

Jim

Well, bearing in mind that I could hardly walk unaided at that point, I must be honest and say no, not that quickly. What I did feel after just a few days, though, was a certain clearing of the mind and my speech definitely improved likewise. This wasn't wishful thinking because I started it not really believing it would work.

Some days you probably won't feel so good, though, so don't get despondent if tis happens: this again is personal experience.

Sarah

ljm,

If you read through the various threads (I suggest searching under "CPn", most relevant threads pop up) you will see that I went to Vanderbilt without any success. Now I don't have clinically definite MS, so that may be the reason...but from talking to others who have also contacted them, it seems like they are mostly worried about doing trials there right now, not treating patients with antibiotics routinely.

If you want a physician in the U.S. who uses this protocol and you are willing to travel, PM me and I will give you the information. I saw a doctor in CA who put me on it- Dr. Powell, who Sarah mentioned before. If you have any questions about seeing him, also feel free to contact me. I have had a great experience with him.

The study in question had positive results, marginally speaking. Only eight patients in the entire study; 3/4 on antibiotics cleared CPn from their CSF; no clinical changes between groups. But it is SO small that it doesn't put me off at all; there's not much that can be learned from following eight people! (And it did have some encouraging results in the antibiotic treatment group).

There's a whole lot of evidence in favor of the antibiotics and they are definitely worth trying.

Again, PM me or Sarah (Anecdote) for the referral information for Dr. Powell, who is treating (at least two) members of this board with the protocol right now. If you're in Europe, I'd suggest seeing Dr. Wheldon. I had planned to travel from the U.S. to see him myself, but he was very kind and referred me to Dr. Powell.