27 Apr 2018
Author
gitta
Title

Short explanation of interrelation

Body

This forum and the interrelation between statton, wheldon, geiffers and forum members is not clear to me.

Do the "scientists" contact each other? Is this forum a sort of link between them? I found the discussion on persistance in white blood cells very interesting and it seems, as if Jim and some others have a very deep understanding of medical backgrounds. Do you/they have a medical education or is this knowledge learned by ... cannot find the word... intensive study?

Comments

gitta, briefly:

  • this site is "built" by the users, people like you who create content.
  • Some of us have MS, or CFS, or RA
  • Some of us are caretakers for people with C.Pn.-caused diseases
  • Some of us are trained in medicine as doctors, nurses, pharmacists, or psychologists

Sometimes doctors (notably David Wheldon), or other medical professionals will contribute to the site, and I get the impression that some other doctors read the site but do not post to it. We have no way to know for sure, though.

We are mostly concerned amateurs, though. We do web and print research, as time and brain fog allow, and post it here for discussion if we think other concerned people might benefit. There's a short history of this site at http://www.cpnhelp.org/?q=about_this_web_site

If you find a paper that is interesting, in most cases you will find a link to a "source document." When I can, I show those to other interested people outside this site. 

Ron

On Stratton protocol for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continous; metronidazole -- 4days on, 7 days off.

RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent

 Gitta- Ron's explanation is a clear description. None of us here, except for David Wheldon and a few others, are physicians. Some of us have other scientific background, some in medical related fields. Any "expertise" we have is from the necessity of being informed patients, and from having had to search hard to find ways to heal, as well as explain what we have found about Cpn to others.

We are fortunate that Dr. Stratton has been generous in answering questions in my private conversations with him, and providing updates and comments when we "expert patients" reach the distinct limits of our understanding.

I don't know about the doctor you refer to, so can't respond to those comments. 

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

Gitta          

I propose the following alternate term.  Instead of "intensive study? " I suggest "motivated self-interest", which I believe is more accurate. 

all my best

John

RRMS/EDSS 4.5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, JohnRRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006nac 4x600 mg/daydoxycycline 2x100mg/dayazithromycin 3x250mg/day MWFmetronidazole 3x400mg/day then 3x500mg/day

Focussed Study - is what I do, Gitta.  My subject is MS Drug Therapy and I take an analytical approach to this area (I scan all published papers on MS and read abstracts of many, then study a few in detail).  However CPN is a large subject and I suspect that no one in an expert in all areas.  CPN is implicated in many different diseases and the treatment approach does not have to be the same for all diseases (compare MS and RA as an example).  My advice is to get a diagnosis then read about CPN and your disease, then ask questions on the site, (stating your disease will help you get focussed answers).  I believe that this site is the largest data focus for CPN but always keep in mind that most people are treating CPN on an empirical basis (no definite test results).  The site is an open one but Jim K and his band do an excellent job in keeping the data accurate.

Good luck.......Mark

Mark Walker - Oxford, England.
RRMS since 91, Dx 97, CFS Jan03.  Patient of David Wheldon Feb06, started CAP Mar06, with Copaxone. Pharmaceutical Consultant (until I stopped work in Jan03).

Mark Walker - Oxford, England.RRMS Nov 91, Dx 97. CFS Jan03. Copaxone + continuous CAP (NAC, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abx from June 07 onwards.

Thanks, Mark- It means a lot to have some real experts like you (in your own area of expertise of course) keeping an eye on our efforts to keep such a wide ranging site accurate.

Mark's suggested method of investigation is a good set of steps for anyone trying to use this site to understand their own particular needs in treatment.

Although the CAPs are offered as applicable to any disease process, at least as a starting point, many of the variations individuals report in how they are using the CAP's are due to physicians adjusting them to the needs of particular diseases. We are gradually learning about these differences, mostly by the comparisons we are able to do on this website, as it is not disease focused, but focused on the organism which crosses many disease diagnoses.

This was one of my primary purposes in starting the site-- To have one place where treatment for the many diseases in which Cpn is implicated can be understood, reported and compared.

It is through our dedication to accuracy and quality of information that professionals like Mark have also been attracted to cpnhelp.org, and they in turn help contribute further to the quality of information here. Truly a group effort! 

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA