Editorial

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Website problems- so sorry!

Hi to all Cpner's-

Our server went down for puzzling but solvable reasons. And, to all you early adopters of www.cpnhelp.org<, no it wasn't me and flagyli!

Three cheers for our developer Kent for resolving the problem! He's in New Zealand, and the time difference can actually be helpful when problems happen in US time zone "after hours."

We have also been struggling with an onslaught of spam bots causing a lot of behind the scenes havoc. While our spam blockers have kept most spam out of the site, these bots were trying to register as site users at machine speed: multiple times per minute for 24 hours a day!

Hang in there: upgrade coming

The site is going to be upgraded soon, hopefully solving the accumulating problems. The look will also be changing so the theme is compatible with more of those new-fangled mobile devices and such. Keep your fingers crossed!

Editors Take: Information or advocacy? What's really "off topic?"

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Three Years and Counting

We are now three years old as a website and a community. I'm uncharacteristically at a loss for words. I am just utterly amazed at how far we have come, and how many people we have affected. Those of us who have been around over time know that many, many people have been helped. Far more people use the site than we see posting here.

I won't review our starting and history, as these stories can be found in birthday editorials from prior years.

First birthday http://www.cpnhelp.org/happy_birthday_cpnhelp<

Second birthday post http://www.cpnhelp.org/2_years_17_weeks<

Majority of ME/CFS Patients Negatively Affected by Cognitive Behaviour Therapy?

Some of you, reading the article in the Handbook I wrote on CFSi/ME & Cpni, know that I'm not a fan of Cognitive Behavior Therapy (CBT) for fibromyalgiai and chronic fatigue/ME. I believe that what originally began as trying to provide better coping tools has been coopted by the medical establishment's tendency to blame the victims of disease for their own disease when medicine is impotent in helping these serious disorders.

So, on seeing Dr. Teitelbaum's report of a study in the Netherlands exposing the harm created by CBT for CFS/ME patients, I had to bring it to our readers attention. Below Dr. Teitelbaum's summary and the link to his excerpt from the research report translated from the Dutch.

New Folks: help us out please?

New folks here to Cpnhelp, we need your help.

This site is full of wonderful, generous folks, who are sick too, who spend a lot of time seeing to questions and making sure people get the help they need. We will do our best to help you through the confusion. I've seen few community websites like it.

But for some miraculous reason we have had a huge influx of new people lately, and we are getting swamped, especially with having to answer the same questions over and over again with each new person posting. We are glad you've found us. We are a bit overwhelmed with the bounty.

Rules of the Road... a cautionary reminder

I've had a few questions and concerns raised lately about some of the recommendations made to people asking for help with protocolsi, treatment reactions, and other questions. This suggests it is time to restate some of the "rules of the road" here. Old-timers may drift in recalling the need for more cautious or measured tone, and newer members may not be familiar with the care we need in responding with our own impressions.

We have a lot of new members here. This is great, as it means we are reaching more people. We also have a wider variety of illnesses and co-conditions being represented here than ever before. Some people may be using protocols which are different than typical CAPi treatments, and there may be important reasons for those differences.

2 years 17 weeks

2 years 17 weeks

The title of this editorial is how long www.cpnhelp.org< has been in existence. I had planned on writing something intelligent and reflective, summing up what we’ve learned in this time, and offering an over-achiever’s commentary for the holiday. Blah, blah, blah.

Any Doctors in the house?

It would appear that there are doctors out there willing to treat using a Combination Antibiotic Protocol. I know that some have been using this site as a resource and sent patients to us as well. A year ago when we tried to gather information about doc's willing to treat Cpni this way, we got no response. We chalked it up to the whole thing being too new and to professional caution. But maybe it's getting a bit more acceptable?

Thanks to all for your donations

I want to thank everyone who has made a donation to www.cpnhelp.org< recently, and to those who have encouraged donations. I haven't had time to give personal thanks to each donor lately, but am deeply appreciative that people value this site enough to help maintain it.

You should all know that we really are doing fine and currently have more than enough to support any current website maintenance and upgrading. This community has been quietly and regularly helping out as we go along. It's quite amazing to me. Even a number of quiet "lurkers" who have not posted have shown their monetary appreciation. So don't feel pressured or worried, and give only if and when it suits.

Hold onto your hats: CFS/Cpn Article republished by Immune Support Newsletter

Well friends, expect another rush of interest in Cpnhelp.org. I sent the link to my recent article on CFS/FM & Cpn to Immunei Support, who publish a regular newsletter on CFS and FM topics. They were very interested in the article and published it, with some introductory commentary, in their Patient Opinion section of the CFS newsletter. You can find the article at:

http://www.immunesupport.com/library/showarticle.cfm?id=7938&T=CFIDS_FM&B1=EM042507C<

Outed again!

Editorial: Towards Responsible Discussions at www.cpnhelp.org

There has been some venting and discussion of concerns about treatment modifications from some patients of one of our Cpni doctors here lately relating to pharmacologic doses of Vitamin Di. While I promised myself to step back from the site for a bit and give myself a break, I would rather make some comments now then have to head off a snowballing problem. I can just see it coming. So my commentary ensues.

I'm So Proud of Us

Editorial-

I've just posted Red's blog story in the Patient Stories section, as it is such a wonderful chronicle of the Cpni journey. Red also typifies the intelligent, questing and experimental mind which drives many people here to not settle for standard medical approaches to "incurable" diseasesi. He also stepped boldly into the scene here, the only member at that time who displayed Rosaceai as his main symptom, so he was in many ways a lone pioneer working at the edge of knowledge in his exploration of the CAPi for treating his condition.

I am tremendously proud of what we have formed here: the Cpnhelp community, whose openess and encouragement supported his explorations, and of Red who has been able to take his experience of the CAP Cpn treatment to his community of Rosaceans and to further contribute to our knowledge and understanding here at www.cpnhelp.org<.

A Test Result is Not a Diagnosis

Editorial (Rant?)

This is one of my own pet medical peeves, stimulated recently by a thread here on Lyme tests and what bands meet criteria, etc. It relates directly to the difficulties with negative tests for Chlamydia pneumoniae. Yes, I know it's a complex issue, but the basic rule is really a simple one:

A serologyi test, either negative or positive, does not a diagnosis make!

Medical diagnosis is a complex art which includes serology, clinical history, symptom patterns, treatment history, and other medical tests. True, some serology carries more weight in the clinical equation that others and may be taken almost defacto as diagnosis. For example, one is treated for many diseasesi on the basis of positive serology, such as for TB or STDi's, even if you are asymptomatic and have nothing obvious in your history.

Happy Birthday Cpnhelp!

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 hypertension">i 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.

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