Cpnhelp.org - Chlamydia Pneumoniae Treatment

I am sitting in a wonderful pool of natural hot spring water in a lovely and simple spa near Guadalajara called Rio Caliente. It is what one of the forefathers of CPNi treatment for "Rickettsial infection" (we believe an early reference to Chlamydia pneumoniae) for Multiple Sclerosis, a French physician named Le Gac, would have called "balneotherapy." Paul Le Gac, reporting in 1960 before the actual bacterium of Cpn was discovered, used balneotherapy to counter the inflammatory and porphyric side effects of antibiotic treatment. The fancy sounding name was basically soaking in hot mineral water.

So, it is literally soaked with this deep therapeutic tradition, that I may take stock of our first birthday of www.cpnhelp.org. It has been a year since I started Cpnhelp with the web mastership help of Bleu and the savvy medical assistance and enthusiasm of our "research maven" Marie Rhodes. At this juncture, we are facing a very new era in the reality of Cpn treatment for a wide variety of diseasesi. When I began the web site we had only the historical examples of Dr. Stratton and Mitchell's research subjects, many of whom recovered significantly from MSi, CFS and FMSi, and the "MS/antibioticsi poster child" of our dear Sarah Wheldon who had made a rather miraculous recovery from rapidly degenerating MS. There were others starting the Combined Antibiotic Protocol (CAPi), but few had been on it long enough to show any real results.

Now it's a different story. We have people who have gotten their lives back; people who are experiencing return of function, which medical science says should not be occurring; we have people with chronic hypertensioni normalizing their blood pressure and no longer requiring blood pressure medication; we have people with long histories of Chronic Fatigue, such as myself and Raven, coming back to life and those of us who have been in unrelenting chronic pain from Fibromyalgia seeing our pain diminish and disappear. And none of this should be happening, according to standard medical "belief" (I hesitate to credit it as "science").

Some of you may not know the history of how this all came about. Since birthdays are often a useful time for reflection and taking stock, I'll indulge for a moment in recounting how www.cpnhelp came to be.

I've had CFIDSi and then Fibromyalgia for, perhaps, 25 years. I have always struggled through. I completed graduate school, worked my profession, even wrote two books despite my illness. But it was always up-hill. As the years passed it got harder and harder to squeeze out another drop of life force from my diminishing energy and increasing pain. Like many, I've tried everything over the years and managed to find various medical and alternative sources which helped me manage and work, but nothing that cured what ailed me. I constantly searched the Web, and was a member of various email lists discussing all sorts of things related to CFIDSi and Fibromyalgia, looking for answers. The only thing that was clear was that there were a lot of us, more and more every day, suffering as badly or worse than I, and that medicine had nothing significant to offer us other than palliative care or, more commonly, blame for our illness.

Finally, by Spring 2004, I was at the bottom of a 2 year long decline and becoming desperate to find a new resource. I fortunately found a new Fatigue clinic opening in my area which had a broad integrative view of these illnesses. They did a plethora of diagnostic blood tests in their assessment. Among other things, they found that I had high titers of bacteria called Chlamydia pneumoniae, Cpn. It was a bug I'd not heard much of before. Their protocol for treating this was 3 months of tetracycline.

After three days on tetracycline I knew that Cpn was indeed the problem which lay at the center of my symptoms. How did I know? Well, I was completely and utterly floored by die-off reactions from the antibiotic: intense inflammatory pain in muscles and joints, massive fatigue and brain fog. Rendered virtually dysfunctional for almost a week. Gradually the intensity of this die-off lessened, but from my first weeks on the treatment it proved to me without a doubt that Cpn was at the root of my ailments.

Being scientifically trained, and a restless researcher by temperament, I immediately went on the web to research Cpn in more detail. What I found were the forums on antibiotic treatment for Multiple Sclerosis on www.ThisIsMS.com. I read through these posts breathlessly, even though the disease being treated was not CFIDS or Fibromyalgia. But, so many of the symptoms in treating with antibiotics were the same: pain, discoordination, brain fog, and so on.

I read Sarah Wheldon's posts, discovered through this her husband David Wheldoni's miraculous site on treating MS via a multiple antibiotic Cpn protocol I began, hesitantly, to post on ThisIsMS forums. Despite the fact that I was not suffering from MS and did not know if it was appropriate to to post being such, I was welcomed so warmly by Sarah, Rica and others. I gratefully began to learn more from their experiences and to ask questions about the treatment. I also began to correspond with David and Sarah, and was given so much generous help by them. Learning from them, I recognized that the protocol my clinic doctor was following was not adequate to treat the whole problem. I decided to print out David's protocol instructions and to bring them to my own doctor. To my relief, she was very willing to look over the protocol and prescribe the regime outlined by David. So, I switched to doxycycline (better nervous system penetration than tetracycline) and eventually added azithromycin and after some time Flagyli as well. The die-off reactions in each step  convinced me further that this was the right course.

I continued to research Cpn, and found with David Wheldon's suggestion the Mitchell-Stratton patent materials for the Vanderbilt work. With David's encouragement, I contacted Dr. Stratton and had some very helpful phone discussions with him. I began to realize a couple things:

    •    That the scope of Cpn disease went well beyond MS and CFIDS. Many other people needed to know about it.
    •    That the Combined Antibiotic Protocol for treating it was very challenging to go through, and those of us in the brain fog of the disease itself desperately needed support from others ahead of us in the journey.

The forums at ThisIsMS were very kind in welcoming myself and some other CFIDS sufferers to their discussion, but I was concerned about detracting from their rightful focus on MS. As a scientist, I also wanted a common forum where responses to the CAP from people treating different Cpn related diseases could be compared and contrasted, where we could learn from each other despite differences in our disease condition.

And I wanted one central place for information, so that no one so sick had to struggle to find the scattered information to find help. Struggling with this illness is enough! The Vanderbilt work is revolutionary. Sick and brain fogged people should not have such difficulty finding this material! The more I learned, the more outraged I was that this brilliant work by Stratton, Mitchell and their team was virtually unknown.

So, on a discussion list for infection/inflammationi, I posted my discoveries about Cpn, and expressed my thoughts about starting a website for this purpose. Bleu offered his web-master help very spontaneously, and with his encouragement we used Drupal, a community information system, as our web software. Marie Rhodes, a poster on ThisIsMS who was contemplating starting the CAP was very interested in the research possibilities for such a central web-site. Her grounded medical orientation and growing enthusiasm for the project was a crucial element which helped this grow from an idea to a possibility. I myself was too sick to even think about putting it together alone. Without their voluntary help and encouragement the whole thing would have stayed on the shelf of my hopes and desires.

A final tipping point was David and Sarah's encouragement. When I ran the idea past them in an email, they both signaled their willingness to participate in the community. Without their support and willingness to give oversight, keep me on the right track in terms of the protocol, I would have worried about providing erroneous information due to my ignorance about the whole process.

And to add to it, Dr. Stratton, the "man" himself, also signaled his willingness to talk from time to time, discuss things at length on the phone, and provide "deep cover" support. Here was a doctor and researcher with a lifetime of knowledge, patents and so on, and all he cared about was that this information get out there to the public so others could benefit from these discoveries. He had no motive for profit or payment. Everything he offered was for free. He sent me reams of articles, pictures, the slide show from his presentations, everything which was the information base for starting the Research section. His humanitarian gesture in this was profound and critically important to the quality of information available on www.cpnhelp.org.

I gamely went ahead with enthusiasm and some blind luck. Bleu got the first site up and running August 27, 2006. Since that time, in only one year, we have grown to 433 members,with perhaps half of those active and other quiet "lurkers" learning from the site. Cpnhelp has become a rather wonderful, self-regulating community where support, encouragement, wisdom and friendship "rules," as my teenage daughter would say. The atmosphere of welcome and yet place for vigorous discussion and questioning, is quite unique in my experience. We have created a special culture here, which gets readily communicated to new members, and doesn't seem to require any central figure to maintain. I recall somewhere about six months along I found I no longer needed to be responsible for greeting new members and helping them find their way. I logged on to find 4 or 5 welcoming responses from "old-timers" who quite clearly felt as much ownership and responsibility for helping each other as did I. Quite an amazing bunch!

Most important of all is that, in this rather long and sometimes arduous treatment process, enough core members have been on the CAP long enough to be reporting tangible and quite unheard of improvements. Most of the diseases we are using the CAP for are "untreatable" conditions, and certainly considered "incurable." MS, CFIDS, FMS, Roscoe, hypertension, cardiac disease, and so on. These are, at best, "medically managed" conditions. Some of them, like CFIDS and Fibromyalgia, are not even believed to be "real" conditions by many in the medical establishment. As Ron (Paron) commented in a forum here, they are "pre-existing non-conditions" to many doctors.

And yet we are seeing actual remission of disease and return of function! These are no longer just encouraging stories. The numbers and consistency of reports are becoming quite solid. For myself, allthough it's taken me two years to get here myself, even I, after nearly 25 years of CFIDS and related problems, can claim 50-60% improvement. And this after my function had slid to rock bottom! I can rightfully say that, without this treatment, I would by this time be unable to work and possibly bed-ridden. It was getting that bad. Now I have enough energy and momentum to tear out and redo my kitchen! I have not been able even to fantasize about such a project for at least 10 years. A couple of us on Cpnhelp have jokingly referred to the "kitchen test" as there have been a few who have initiated such projects as they reach a point of improvement in their conditions. I think it has to do with becoming well enough to consider doing big projects one has put off due to illness. Moving forward in life!

As I write I know that the climate is also beginning to change. More doctors, even neurologists (!), are beginning to consider infectious causes to so-called auto-immunei or mysterious diseases. There are efforts under way to fund and re-establish the Cpn lab at Vanderbilt so many unanswered questions can be explored. Doctors such as Dr. Stratton, Dr. Wheldon, Dr. Powell are learning more each day in their clinical practice with a wider and wider array of patient problems which are responding to Cpn CAP treatment.

It's time to rightfully celebrate what we have formed together, and to gather steam for an even more promising future! To all who have contributed to this community, and to all who come to it looking for support and answers, may I offer you a blessing from my tradition:

Le Chaim!
To Life!

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