Antibiotic trial NCT00043264

A forum for the discussion of antibiotics as a potential therapy for MS

Antibiotic trial NCT00043264

Postby Justinian » Fri Aug 12, 2005 7:34 pm

NCT00043264 is a phase II clinical trial looking at antibiotic treatment of MS. Double-blind, placebo controlled, all that good stuff. It should have been finished something like 9 months ago. Does anyone know if the results were released? I haven't heard anything. It would be nice to get some scientific data about treating MS with antibiotics. The results could either jumpstart more people receiving such treatment or serve as a warning flag for those considering abandoning more conventional approaches.

Either is important information. I'm afraid of people passing up a potentially great treatment, and I'm afraid of people chasing a red herring because of anecdotal (heh) information. We need some data and I don't understand why the results of this study aren't available. Or maybe I'm just really bad at using google.
User avatar
Justinian
Getting to Know You...
 
Posts: 10
Joined: Sat Jul 16, 2005 3:00 pm

Advertisement

Postby SarahLonglands » Sat Aug 13, 2005 4:17 am

I'm afraid of people passing up a potentially great treatment, and I'm afraid of people chasing a red herring because of anecdotal (heh) information. We need some data and I don't understand why the results of this study aren't available.


But they are! (heh)

This seems to be the Texan arm of the Vanderbilt trial:
http://thisisms.com/modules.php?name=Forums&file=viewtopic&t=1252&start=0, posted a few threads below here! The trial finished early because there was great difficulty in finding people willing to try it, then one person dropped out making the number too small to continue. Since the trial did not include the use of flagyl/metronidizole, and was only aimed at early RRMS people, it would not have shown the greater benefit that people are finding by just going ahead and using empirical treatment as in both the Vanderbilt and Wheldon protocols that are so much in evidence here, both in this forum and the Regimens forum.

This is also worth looking at:
http://thisisms.com/modules.php?name=Forums&file=viewtopic&t=1399

That may be true Sarah. Doc. Sriram and I spoke for a while on Tuesday and he mentioned that some of his colleagues (away from Vandy) believe he's chasing the pot of gold at he end of the rainbow. He's is a very proud man. Everything that he, Doc Moses and Doc Stratton get involved in will have to be very well documented. This type of treatment has a lot of merit to it I believe, more so that the Rituxan trial that I'm getting out of.

He mentioned that he speaks to your husband often and that you had sent him a beautiful painting. He seemed very elated that you were doing so well on this treatment, as one of the post that I showed him was one of yours.

Won't it be wonderful if turns out to be as simple (that may be a understatement) as getting rid of a foreign bacterial and then we'll have to find something else to do with our spare time. I can't wait!!


Sarah (aka Anecdote) :wink:
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2118
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby Justinian » Sat Aug 13, 2005 2:37 pm

Anecdote wrote:This seems to be the Texan arm of the Vanderbilt trial:
http://thisisms.com/modules.php?name=Forums&file=viewtopic&t=1252&start=0, posted a few threads below here! The trial finished early because there was great difficulty in finding people willing to try it, then one person dropped out making the number too small to continue. Since the trial did not include the use of flagyl/metronidizole, and was only aimed at early RRMS people, it would not have shown the greater benefit that people are finding by just going ahead and using empirical treatment as in both the Vanderbilt and Wheldon protocols that are so much in evidence here, both in this forum and the Regimens forum.

Sarah (aka Anecdote) :wink:


Thanks for the info! That is helpful.

But the evidence you refer to in this forum is all anecdotal. That's probably why you chose the name, after all. Anecdotal evidence is useful but is no substitute for scientific evidence like clinical trials. There are all sort sof problems with anecdotal evidence, including the fact that people who show improvement are MUCH more likely to talk about it. We need both anecdotal and scientific evidence in order for people to make a truly informed choice! I was hoping this trial would provide some useful information. It's a shame they had so much trouble with it.

I see nothing at all wrong with people who are not responding to more conventional therapies trying whatever might help them, including abx. I might do so myself if it comes down to it. But I get very worried when I read people saying things like, "I was on XXXX and it really helped. It eliminated pretty much all of my neurological symptoms. But I've stopped taking it and switched to antibiotics in hopes of a cure!"

That's probably not a good choice, and it worries me quite a bit.
User avatar
Justinian
Getting to Know You...
 
Posts: 10
Joined: Sat Jul 16, 2005 3:00 pm

Postby SarahLonglands » Sat Aug 13, 2005 3:25 pm

"I was on XXXX and it really helped. It eliminated pretty much all of my neurological symptoms. But I've stopped taking it and switched to antibiotics in hopes of a cure!"

If you were referring to LifeontheIce and statins here, she is a general physician. Katman is married to a paediatrician and I am married to a medical microbiologist, so yes, we might only be anecdotal, but.................

I chose the name, by the way, with a certain amount of irony intended. 8)

Perhaps you think I should either have refused the treatment until all the appropriate trials had been undergone, meaning that because my progressive disease was so aggressive, I would by now be beyond hope, or I should have just kept quiet about it, meaning that the other two people named above, never mind many other people both on this board and elsewhere, would similarly have ended up beyond the pale. It is a difficult treatment for many people and quite a few give up because they want instant results and don't get them, but that is their choice. This board has more intelligent members than many: they aren't going to rush headlong into anything without thinking carefully first.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2118
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby mrhodes40 » Sat Aug 13, 2005 7:30 pm

HI! Many of us are very capable when it comes to evaluating this regimen, probably better than many. I am a nurse and have spent some time in medical research, so the technical details of the regimen are fun for me to read. We are not doing a proven approach, and we know it. This is empirical treatment.

If you work inside the medical field, you learn a number of things.

1. medicine is administered by people, and the bulk of the time your best guess is what a patient gets. That's all you have to offer. Medicine is not an exact science, and it has some inherent shortcomings. Every practitioner has biases and experiences that influence his or her diagnosis. You can go to several people and get different diagnoses and often different prognoses. And every patient has personal differences that makes diagnosis in their particular case "not a text book case of (whatever)" In my case, I have asthma, seronegative arthritis and MS. The artritis and MS attacked in one same week. This is not textbook MS. It is very suspicious for Lyme or CPn, though my lyme test (done once) was negative. Not that labwork is ever wrong mind you :wink:

2. Our medical system is commercial. Because of this, what is known and what is researched is chosen/funded because it has commercial potential, not because it is the next most logical progression of idea.
If you like to read something eye opening read Suddenly Sick in the Seattle times on the subject http://seattletimes.nwsource.com/news/h ... denlysick/

3. because our medical system is commercial, research done by commercial interest is inherently biased to some degree. Stunning results by the drug I take, Copaxone, are not viewed so favorably by an independant review to evaluate efficacy of the medication (Cochrane Review) Might the Cochrane people have had a bias themselves? They may have. There are billions and billions at stake here. People will take advantages if they can and that includes paying off people doing reviews. I'm not saying it happened, just that it's possible.

4. Antibiotics are not a commercially viable product. There is some research going on but it is small compared to other research efforts and fraught with difficulties due to the inherent difficulties in culturing CPn. As findings are released there is a huge thought train going the direction of the autoimmune model. Immediately any work done with positive findings are questioned based on the autoimmune model Minocycline helped? Well, it is because it's an antiinflammatory. Not proof.
You can find this tendency in yourself when you believe something strongly and someone tells you something counter to your soul deep belief.

5. When research came out, done by a previous Dystel prize winning researcher I might add, that suggested that MS was not autoimmune, there was a deafening silence by the powers that be. That work has now been followed up by several other workers and the last abstract I saw quoted (it's for money I did not buy the whole article...jsut saw the quote) the author was adamant that MS is not autoimmune. SOmething is killing the nerves and THEN the immune system comes in to clean up.
I long ago mentally decided that autoimmunity was not the problem and the Prineas research was like a fresh wind to me.

EAE which is a true autoimmune disease because it is induced by researchers, is curable and has been for a long time. Not only that, but it is self limiting. What it has in common with Ms is inflammation in the brain, so a tremendous amount of research in that area still aplies to our situation, and it makes the damage look similar. You are talking about immune system cells being in the area and causing a large amount of damage simply by their presence. Inflammation while healing is always a double edged sword. It causes some side effects for the body. One of the big areas of research in spinal cord injury is to address this, as part of the damage to the spine is due to the body responding with immune cells to "repair" the area. This is in part why the autoimmune model is so hard to shake. Inflammation, or the immune system, plays a role in damage no matter why it is there.

The germ theory has been rejected time after time becasue no one can culture any bugs in the brain, either viral or bacterial, until Dr Sriram found a new way to check for CPn and began to document it's presence in the CFS of some MS patients. Others immediately called his test questionable and produced research on MS patients showing that the CFS THEY checked was in fact not any more likely to have CPn in it than others brains were using the old regular culture techniques. His technique used cell wall fragments which others have called not valid.
This research to-ing andd fro-ing has been in action for many years now.

6. And lastly, this is not an exact science. I've taken Copaxone for 7 or 8 years since the month it came out. I am secondary progressive now. I can barely drive becasue my right leg is so weak that I have to lift it to get to the brakes and gas. I know the natural progression of MS is not benign. We already know what it will do to me if left unchecked. I've personlly been a good little girl for long enough and will now do what seems logical for me. I've had MS for 15 years. When I was diagnosed in '93 I was told it would be 5 years. I will not make another 5 years.

When I told my doctor I am progressing, he said you have MS what do you expect?

I expect to be free to use approaches that seem plausible and logical to me without prejudice and a paternal attitude that tells me to be good and get worse as expected. This regimen seems benign to me. I can't imagine it will hurt other than as you pointed out that I amNOT doing something else. THe something else offered me is novantrone which aI already decided I would not do. I am pleased to have abx available to me and that Sarah came forward with ehr story. In my particular case, a bug has always been a good idea becasue of the two diseases at once. NOw that there is a complete rgimen designed by a microbiologist, there is a good chance of getting past it an beating it.

That having been said, you do make good points about the need to see quantifiable reports of people doing better. I agree with this and asked people to make measurable regimens reports that others can see what they mean by "I'm doing better". ( I won't use the word "Data" as that seems to be scary somehow...) We soon should hear of some people's MD's making comments about improvement. We should also see some reports of people doing things specific that they could not before. This will give the people reading here a clearer idea of HOW people KNOW are better than they were before. No matter what though, this is empirical and unproven. I am not making medical advice here, just expressing myself as a patient. People should seek the advice of their own medical professional........

I think it's right for me. I have no idea of it's right for you.
Marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA


Return to Antibiotics

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service