This Is MS Multiple Sclerosis Community: Knowledge & Support

to Treez and all others that might be interested in going the antibiotic route in the States,

A lot of you may already know this but just in case. If your looking for an open minded Dr. Look in the direction of a D.O. as opposed to an M.D. Just by the very nature of their schooling they have to be more open minded. Alot of people think that they are quacks, But from my experience they are much more interested in helping in any way they can as opposed to just following the rest of the heard-minded medical community. I've recently seen 2 different D.O.'s and both of them are open to giving the antibiotics a try.(The first one is now only concentrating his practice on chronic fatigue syndrome.) So don't despair and never give up! You will find a way to get what you want.
Steve

Unfortunately, it is far more irresponsible to talk of "false hope." The entire course of human medical history is exactly that of finding cures for diseases that were previously thought uncurable. As far as my personal experience is concerned, the regimen of antibiotics isn't even a matter of "hope." It's a matter of something that already worked.

To call something "false hope", especially when it is so promising, to my mind, is cruel beyond human comprehension.

I strongly agree with Byron! I too don't think the antibiotic route is one of false hope. At the very least, it may be one of limited value. I don't mean limited per person, what I mean is not everyone with MS has a C.P. chronic infection. There seems to be a percentage of MS'ers who will respond very favorably, then there is a percentage who wouldn't. This is based on the treatment of infection route. It doesn't even take into consideration the other positive properties, that obviously would increase the response-to-treatment percentages. What would one have to lose by cautiously trying that route?

Many times here I've said I'd like to try!

EVERYONE should have there own hope, it is a spiritual thing. For another individual to give one false hope is just cruel.

Hanging on to my own hope for a devine intervention forever.............


Treez

I thought this might be interesting to some, arthritis is also an auto-immune disease.




http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15468362



Robin

Raven,

Yes, this is a very interesting study. Reactive arthritis is well known as an auto-immune, inflammatory disease, so a clinical trial to demonstrate the therapeutic benefits of antimicrobials is timely.

Probably the main point of interest in this case is the comparison of doxycycline or rifampicin alone to their joint, synergistic use, to avoid the development of resistance. This is precisely why doxycycline and latterly rifampicin was used in conjunction with roxithromycin in my regime of treatment. Here roxithromycin was chosen as the synergistic partner because of its immense ability to readily pass through the blood brain barrier.

Sarah

And here is a link to a study presented at the 2003 meeting of the Infectious Disease Society of America, again referring to C Pn, but this time the disease is Alzheimer's: not an autoimmune disease, bit certainly a disease of the brain.

http://www.ama-assn.org/amednews/2003/10/27/hlsb1027.htm

Unfortunately it is again a case of not enough people in the trial in the first place and then too many people dropping out. So then you get the same old comment:


Sarah

Is it just me, or do they tend to not publish very much information on the reasons so many patients drop out? Especially if the study itself was compromised because of the dropout rate, you'd think the statistical correlation from the dropouts would tell you more than the results from the remaining subjects.

hmmmmmmmmm...........

Deb

Right on Deb,

Then you look at the Cochrane Collaboration's report on the interferons, If you factor in the dropouts the results are dubious at best. Unfortunately there appear to be too many vested interests and egos in most research.

A statisticians paradise!

All we can do is keep an open mind and try to read between the lines.

Robin.

OR a statistician's worst nightmare! LOL

Deb

Hi - I guess I ought to add something here. I'm currently being treated here in bedford, uk, by Dr David (ben) wheldon, husband of Sarah(jane) above.

I have primary progressive MS. I was diagnosed around two years ago after about four years of mild and very slow progression of symptoms, starting with tingling in the legs, then clumsiness, and now a limp. It's all very mild and I guess it's about 6 years since the very first symptoms. I do Oxygen therapy about once a fortnight and i do my best to live a stress-free life, and that works for me. I'm tired most of the time. But i'm a full-time-working single parent and i have a life, so things are pretty good.

I'm taking the Roxy/Doxy treatment with bursts of the Metro thing (as outlined by Sarah above - sorry i can't remember their full names and i can't be bothered to go upstairs and find them!!).

I have to say that, ten weeks into treatment, I have so far not seen any changes, improvements, impairments, or side effects. If there are any then they're so small i can't measure them. My symptoms are generally very, very consistent and they remain so.

So i'm not in a position to say "Try it it works". But what I WILL say is "TRY IT, YOU'VE NOTHING TO LOSE".

There are no significant side effects, and medically it's cheap and virtually (totally?) risk free. In UK the drugs themselves are almost free on the Health Service, so i just have to buy the supplements. But anti-biotics are a relatively cheap drug anyway. I checked this out with a doctor friend of mine before I started and he said the same thing.

Personally, i'm going to continue with the trial for at least the full six months. And if there are any changes, i'll post them here. Hey, I woke up today with more energy - perhaps there is something happening?!

Jez

A few months ago we were discussing the current status of antibiotic research at Vanderbilt. I found this email that I received from Dr. Sriram and wanted to post it. (I've read some postings on the web, not necessarily here, that concluded that the treatment has failed and that they have stopped doing research):

From: Sriram, Subramaniam
Sent: Tuesday, July 13, 2004 9:20 AM
To: xxxxxxxxxxxxxxxxxxxx
Subject: RE: C. pneumoniae

Dear Mr. xxxxxxxxxxx,
The research that we are doing with MS has not evolved to a state where I am comfortable with diagnosing and treating patients with MS with antibiotics. That having been said I will not have any problems in including you in a trial that we are planning to implement when we receive funding from the NIH. That may be at least a year away. Until that time I will advise you to take counset from your physicians.
Sincerely,
Dr. S. Sriram


So as you can see, research is ongoing. I wouldn't have qualified for a trial (being in limbo and all), and I wasn't willing to wait in any case.

Yea, that was probably me, Daunted. (Well, except that I myself didn't say the whole thing had "stopped", just that they weren't able to duplicate a certain result again so far, that had prompted the initiation of this type of research to begin with.)

I posted at http://www.thisisms.com/modules.php?nam ... 77&start=0



I think we also talked in another thread after that about the fact that Dr. Sriram does not yet prescribe antibiotics to his MS patients (although, I don't think I was totally believed at the time).

Here are their current trials they have going on:



Deb

I think it's accurate to say that there have been problems replicating the results of finding CPn in the CSF of those with MS.

But I'm not aware of any antibiotic trials that haven't found positive results! Is anyone aware of antibiotic trials in MS that found negative (or no) results?

It's interesting that research is ongoing on the association, as well- perhaps there will be a breakthrough at some point. The literature seems to leave the association as sort of an open question at this point.

Daunted, please help! I have been hunting for that link you posted about the 2004 Vanderbilt trial results, because I can't find mine. I want to give it to someone on this board. I was just starting to pull my hair out when you posted this. Many thanks in advance.

Sarah

Ask and yee shall receive!

When I sit and think about this, THIS is the biggest trial to date...? Eight patients? If anti-chlamydial therapy was a profitable as Tysabri I bet you'd have a huge multi-center trial, pronto. I hope they get another trial rolling soon....

(What's interesting about this study is that it is only six months of treatment, and included no pulses of Metronidazole nor daily Amoxicillin, both of which are in the current protocol released by Dr. Stratton for compassionate use).

A Pilot Study To Examine the Effect of Antibiotic Therapy on MRI Outcomes in Relapsing Remitting MS

Subramaniam Sriram, Song Yi-Yao, Harold Moses, Charles W. Stratton, Nashville, TN, Jerry Wolinsky, Houston, TX


OBJECTIVE: To examine the efficacy or oral anti-chlamydial antibiotic therapy in relapsing remitting MS

BACKGROUND: We have previously reported on the presence of C. pneumoniae in the CSF of MS patients but not controls. The relationship between the presence of the organism in the CNS and either the development or progression of MS is not known.

DESIGN/METHODS: Newly diagnosed MS patients, were selected to participate in the study if the presence of C. pneumoniae C. pneumoniae gene was seen in the CSF and they had an enhancing lesion on brain MRI. After a four-month run in phase of monthly MRI’s, patients were randomized to receive Rifampin (300mg twice daily) and Azithromycin 500mg every other day for 6 months or placebo. Patients continued to have monthly MRI’s for a total of 6 months and two additional scans, at month 12 and 14. Lumbar punctures were repeated at month 9 and 12. The primary outcome measure was a decrease in the number of enhancing lesions between patients receiving antibiotics when compared with those receiving placebo.

RESULTS: Due to problems with recruitment, the study was stopped after the eighth patient exited the study. Data on 4 patients on treatment and 4 on placebo were available for analysis. No significant difference in either the volume or number of enhancing lesion on brain MRI’s was seen between the two groups. There was a trend for an increase in the number and volume of lesions in the placebo group as compared with the treated group between month 9-14. A significant decrease in parenchymal brain fraction volume occurred in placebo treated patients from the pre to post treatment images (p<=0.001) that was not evident for those on antibiotics. Three of the four patients on antibiotic therapy, cleared the organism from the CSF by month 12 while in the placebo group one patient cleared the organism spontaneously. There were no clinical changes in either group during the period of study. There were no adverse events in patients receiving treatment.

CONCLUSIONS: The pilot study suggests that anti chlamydial antibiotics can clearC. pneumoniae from the CSF in 3 of 4 patients. The relative stability of brain parenchymal fraction in antibiotic treated cohort when compared with the placebo group, must be viewed with caution, due to the small number of patients in the study. These observations suggests that a larger study to examine the efficacy of antibiotic therapy in MS is warranted

Supported by: National MS Society
Category - MS and Related Diseases
SubCategory - Therapeutics

Thursday, April 29, 2004 3:00 PM