I've not seen this discussion until recently, so I come in now at the tail end of it.
Bromley- I appreciate what to me sounds (at least on your first posting) to be a genuine concern about people with MS using ThisIsMS getting funneled into the CPn Help.org site where only one protocol and one pathological agent is the concern. Like you, I believe that people should be able to have a full range of information, especially on treatments which are not "mainstream" and thus are not represented well in mainstream medical practice and literature. I never would have found out about the Wheldon protocol as ThisIsMS is where I discovered it. So, though I don't have MS, I benefited from the open discussion and available anecdotal reports here. Thank God for ThisIsMS!
It was precisely in that same spirit of making available as much information as possible, and full reports of treatment and research, that I formed www.CPn Help.org
. I wanted this information available to people across the many disease entities in which Cpn is implicated.
I would hope that people who are referred from this site to www.CPn Help.org
are intelligent enough to see it as an additional
resource and not an exclusive lock on "the truth." I would at one time have found your tone of protection patronizing, because as an intelligent user of internet resources feel quite able to judge false claims and sort information. But I must admit to a somewhat paternalistic concern about newbie posters on www.CPn Help.org
who constantly misread or incompletely read information and launch off into half-baked treatment. Brain fog doesn't help us make good judgements either, and like you I feel a watchful concern.
But... it seems to me that you are not serious in your quest about sollid information, since you apparently do not actually read the information that is out there, much of which Marie referred you to. Challenge and questioning is a good thing. I quite agree with the spirit of inquiry. But if you are presented with the data to judge for yourself, ignore it and simply repeat your questions as if they haven't been responded to this is not true inquiry.
None-the-less, I'll take your questions seriously in that spirit and respond myself.
I still think that those considering the abx are entitled to know:
(i) how many are on the regime and how many have done well / how many have not done well.
(ii) whether CPN is the cause of all MS cases, some MS cases (or no cases).
(iii) why neurologists who are the doctors responsible for patients with this disease do not appear to have any time for the cpn / abx approach.
(iv) whether all starting the abx regime will see the same dramatic improvements reported by some (as many will join on this basis).
(v) why there is a photograph of cpn infecting cells on the cpn-help website but why it is not possible to test whether someone has a cpn infection.
(i) The Mitchell/Stratton studies contained in the patent materials (by the way, to quote Dr. Stratton, neither of the authors nor Vanderbilt have ever made a dime off these patents) have quite clearly and thoroughly described the actual treatment cases, including MS cases which were evaluated by neurologists. These are summarized here http://www.CPn Help.org/?q=Stratton-MitchellCaseReports
and Siram's case reports (those on a full treatment) are summarized here http://home.earthlink.net/~robert016/mss.htm
and a number were actually tracked down by the individual who has the website and personally interviewed. David Wheldon summarizes his case results as well, but perhaps you can dig for the link yourself.
(ii) Siram, Stratton and Wheldon, in all their utterances both public and private, at least those I've been privy to, refer to theinvolvement
of Cpn in MS at least to a subset of patients, and the exact proportions are not known. Certainly other infectious agents, Borrelia for example, has been seen to also cause MS. There are huge difficulties testing Cpn in MS. The reality is that no one knows how many MS patients have Cpn, just like no one knows how many MS patients have autoimmune disease, if you get my drift here.
(iii) ThisIsMS is replete with many, many examples of neurologists who have no interest in knowing anything their patients bring them which is outside the ghetto of their medical training: LDN, diet, abx, etc. I find it disingenuous of you to to pose this question of the abx/Cpn approach when it is not used by you as proof negative of any other approach. The truth is most doctors areadmittedly
ignorant about anything outside their own specialty, and many are quite defensive and imperious and not at all curious about something which is not "accepted practice." Do you think the Infectious Disease expert at the vaunted Cleveland Clinic was at all interested in learning about Cpn in the case of my daughter's devastating Chronic Fatigue? No. She "already knew" what the problem was and had neither any knowledge nor interest in true inquiry. And this from an infectious disease specialist. Certainly she would not be interested in looking into infectious agents in MS, as we "already know" that it's an autoimmune disease.
(iv) This is a patently absurd question. Of course not all patients have dramatic improvements. If you actually read the postings and blogs on www.CPn Help.org
as well as on ThisIsMs the information is not hidden at all. Many people report a response to treatment in the sense of a herx reaction to the abx. Some people with MS have reported rather noticeable improvement of long-standing symptoms. Others have reported a quite grueling treatment with small gains, fallbacks, and gradual improvements of functioning over time. Some have reported no response or dropped the protocol early because of it's difficulties. The information is there for you, and everyone, to see and judge. No one has ever claimed it is a cure-all.
(v) The photograph of Cpn clinging to red blood cells is demonstrative of the way in which it is carried on and in cells and spreads infection from the lungs to other body sites. It is an unusual, difficult to generate and expensive microscopy study, only available with difficulty to researchers (a Bradford Microscope).
It has nothing whatsoever to do with actual serology and tests and the great technical difficulties in testing for Cpn. A partial answer to your question is answered here http://www.CPn Help.org/?q=diagnosis_issues
and the more technical difficulties with serology are addressed in research papers on that site, by David Wheldon on his site, and elsewhere.
It's good to discuss these things, and have these questions hashed out in public view. Users can decide for themselves what makes sense to them.[/u]