Neurologists are not taking notice. To understand why not, you have to understand the current paradigm in allopathic medicine, that of "evidence-based treatment", which basically means that doctors only prescribe treatments if they have evidence from large-scale clinical trials. If you want to read about this, just google "BMJ Evidence-Based" and you will find a bunch of full-text article from the British Medical Journal.
This is very problematic, because these trials are often not good science, first of all they are usually very biased by the pharmaceutical companies that run them, and it means that pharmaceutical companies basically decide what will become evidence-based and what will not, with rare exception. Dr. Wheldon's excellent piece in "Hospital Doctor" (http://www.davidwheldon.co.uk/Ignoring- ... dence.html
) alludes to some of these issues.
So, it doesn't matter how many case reports you have, or even small trials, until you have a large-scale randomized clinical trial, neurologists will not take notice.
(But, they are complete hypocrities, in that they will prescribe many medications for symptom relief off-label for MS patients that have zero clinical trial evidence. They only object to using clinical reasoning or case reports or suggestive evidence when the intervention in question intrudes upon their main turf- in this case, the idea that MS is an auto-immune disease.)
If you doubt any of what I am saying, consider this: I believe many of the people who log on here regularly have a greater understanding of the potential role of CPn in MS than do their neurologists. They are ignorant and choose to remain so.
I believe Sarah's case could be reported in the form of a letter/case report to a medical journal and I think that's a good idea. But I also know Dr. Wheldon has been working on some articles which contain more in the way of broad information, and I hope he is successful at getting those published.
I'm an aspiring academic and I know how difficult it is to get anything published that is out of the norm. The current medical literature is not very scientific- if you propose a radical new idea, they send your article to be reviewed by scientists who are funded by pharmaceutical companies who are biased against your idea and might even suffer financially if your idea is correct. Of course they will say your paper is wrong. Unfortunately this is the norm in medical literature.
This is an experimental treatment, it has (mild) risks, and Dr. Wheldon has been, as far as I am concerned, perfect in the way in which he has presented his theory and data. He states very clearly that nothing can be guaranteed in any individual and also notes that CPn is probably related to MS in a "subset" of those diagnosed with MS. We have no way of identifying who belongs to this subset- unless you are in a trial at Vanderbilt University. We should all keep this in mind. But I'm pretty comfortable than anyone logging onto this board, if they read closely, will not be misled into believing that this is claimed to be a solution for everyone.
One way to see data, though, Bromley, is to read the patents. There are plenty of data in those patents. Vanderbilt reports patient histories, improvements, etc in these patents. The information is very specific.
If you go to http://www.uspto.gov/patft/index.html
and type in patent #s
And read this information, you will find what you are looking for, I believe.
It is the data my rheumatologist showed to me before prescribing the treatment.
I have also authored a long thread at Braintalk that gives lots of information- that's at http://brain.hastypastry.net/forums/sho ... hp?t=52240
and if you read it and follow all the links, by the end, there must be about 12 or 15 patients discussed.
Having said all this, and God Bless You if you've read this far, your call for data is a good one, and an important issue. Perhaps at some point we could arrange a thread where people posted simply their diagnosis, symptoms, and the effects of antibiotics. I have seen this done on Lyme boards before and it can be interesting.
Good post, Bromley- we need to be cautious about being overenthusiastic, at the same time, I think in total, the information put forth has been (mostly) appropriately cautious.