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
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
