In previous posts I have asked about trials of the abx regime. Attached in a list of trials and on page 8 there is a trial of the antibiotic therapy. The investigator was S Sriram at Vanderbilt. The trial was terminated. The results were "no significant difference in Gd+ lesion volume or number; significant decrease in brain parenchymal fraction in PBO group not evident in Rx group; no clinical changes in either group
I will help you here. I know you like to think you are very scientific but you are missing some important facts.
One is that abstracts are not the whole story of any work, just a mere taste and often disappointingly different. In this case the real citation is incredibly better than the abstract. I have a link to this here http://www.CPn Help.org/?q=node/56
I have read the whole citation in total. The trial you posted above had 4 people in the abx arm and 4 in the control group It was a pilot study. The main outcome was supposed to be a reduction in lesion load. The people got watched for a couple months then abx for ONLY 6 months and their brains were assessed by a very high level machine at 1 year, which was 4 months aftter abx ended. Hey wait a minute read that again: 6 months of abx and at the one year mark, 4 months after abx they got an MRI. What a tiny small length of time to assess something. Would you reject copaxone based on a tiny 6 month trial of the medicine if they only got the medicine for 6 months then assessment at one year if some parameters were positive? 6 months of avonex then a MRI at one year?
the pilot study sounds like a failure since the main measure, lesion load, was not impacted and indeed it is posted as such but guess what??? a more important fact is in there.
The abx people lost only .2
in parenchymal fraction and the controls lost 1.4
. We re talking about atrophy here. This is a big deal because atrophy is a better predictor of disability that lesion load is. see this <shortened url
so the treated people with a very small amount of time on abx lost a mere 1/7 th of the amount of brain tissue vs the controls??? This was preliminary because it was so small so you can't draw a certain conclusion one way or the other on it, but in fact it is very positive. The conclusion was that a large study ought to be done to look more at the important parameter of atrophy, not that it should be shelved as a failure.
the more important question for you since you are a informed member of this site and not a dupe of the nmss is how did you miss the wider important implications of that study? I am personally interested in a approach that might reduce atrophy. How about you?
Given the drastic improvements reported (which to my knowledge have never been seen before), why have their neurologists not noted these fantastic results and highlighted them in medical journals etc
No this is rejecting work that is done. Sriram is publishing stuff about this and the data in the early patent materials of VU-not placed for money but a requirement of the university- provides you with exactly what you are asking for. THAT material has been posted many times on thisis ms. It includes many patient stories and results tallied by a neurologist. You seem to not count that. why?
It is clear that you started abx as you started a regimens post on it. You must yourself have failed and not posted a final on it or am I missing it?
You keep posting these calls for info without also saying at the same time, hey I did this and at "x" months I stopped because I felt worse. And do you have any assessment that lets us know that the worsening you felt that made you quit was a real worsening of MS and not a herxheimer type reaction that is so well known described by those taking it? My point is you are doing this to protect others apparently less knowedgable than you but I contend you actually have a bias against it based on your personal feelings about your apparent reaction to treatment. In your experience it does not seem to work. Ok that's you. But you did get to try it.
Why don't you go ahead and post your treatment experience every time you see Rica's or Sarah's so people can get that other point of view instead of implying that-- what ought to happen? -- That people ought to be disallowed from saying see CPn Help? this site is about open sharing and the way it si supposed to work is people get to say what they think. So do that please. I am interested in your treatment story right down to the details. Maybe I missed the post? You can certainly leave a blog on CPn Help too. No one would reject it we are into the real picture of how this impact people
After 6 months I do not need spasm med any more. After years of baclofen, requip flexoril, I take nothing (except one single dose at the last flagyl pulse) I have had none for 8 weeks or so.
I walk a little better, my massage therapist can find no spasm in me, I feel normal to her and I used to be an obvious MS patient by her "feel". I am getting better a tiny bit at a time. I still feel doubt, especially at flagyl time, but I am honest about that on CPn Help. anyone can read my blogs about how I am doing including all the concerns along the way. Every new person to CPn Help gets this also, not a cheerleading section as you imply.
People who are saying keep the faith to one another over there are talking to people who have committed to the treatment and are experiencing the herxheimer type reactions that make symptoms increase. It is appropriate to do this for one another. It is not said to persons just coming over as investogators. They are told to read the research and learn.
People on cpn help decide for themselves. We have abstracts of pertinent research and many actual citations. We have people join, ask questions and leave when they do not think it is right for them. They are capable of making decisions newly diagnosed or not.
It seems to me that it is you who thinks they do not have ability to make personal decisions alone over there on CPn Help.
This site is about information. Sometimes the info is that there is a site devoted to one treatment where in depth info is available. I have personally donated hundreds of hours of my personal time to annotate and archive and post legitimate research over there as has Jim In all honesty it sounds as if you are reading the support group postings over there which often are encouraging as people cope with treatment reactions, but simply not reading the research articles. If you want to understand it, then go over there and click the physicians links and read them all. Then read the research articles and read them all
. Then you can decide if it is a good model and possibility. Since the research is not done this is the best you can do. I personally think people ought to still have access to this even though it is experimental. As pointed out, these are approved medications available through your doctor now if you are willing to do something experimental with the help of your doctor
. You would not object to someone doing campath in a trial and would be interested in thier improvement being posted here right? geez these drugs have more of a known history than that....though the final result is no more known. Goodness, some drugs that have been in trials and looking a little promising available off label have been tried in the same spirit by people who could get their doc to prescribe it off label ahead of trial based on the model that it might work. In the end every drug has to be tried on you personally to know if it works in your case.
Frankly since the other approaches are all based on the autoimmune model which is also not proven, and there's some very good indications it is not autoimmune, on that level everyoone is doing an "unproven" approach. The minimal improvements recieved for proven therapies that should stop "autoimmune" disease are a good case in point.