Cpnhelp.org - Chlamydia Pneumoniae Treatment

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 sure that what seems like such a radical departure from the CAPi, especially when all the information put forward here is based on an antibiotic approach, is disconcerting. I am a patient of Dr. Powell, and remain currently on the CAP, which certainly says that he is not abandoning it as a treatment form. I have had some more detailed correspondance with him about his use of pharmacologic doses of Vitamin D, and the scientific and clinical rationale behind it.

The long and short of it is that:

• Dr. Powell has done considerable research on this, including paying for his own cell culture studies.
• He does not engage in this treatment without careful on-going blood work to guard against any toxic potential and recommends strongly against this as a form of self-treatment;
• He has seen significant die-off and ensuing improvements using this approach with the kind of patient population he is seeing. Please recall that he has been using the CAP knowledgeably to treat a variety of illnesses for a number of years. Probably as long as any doctor out there other than Dr. Stratton himself. This is a rare amount of experience. His communication to me is that his results have been so impressive with this approach (which is not as simple as just ramping up D) that he feels it is worth a trial with a number of patients, and that the abxi and CAP can always be returned to or added in if needed.

I'm neither promoting or defending his approach per se as an alternative to the CAP. I'm not medically knowledgeable enough to judge it. I do feel protective of the precious few doctors who are putting themselves on the line to treat this scourge. Especially those who have made their treatment of Cpn public, and who have encouraged their patients to use Cpnhelp as a source of information and support. I will not let Cpnhelp be a place where those doctors are second-guessed on the basis of partial or impressionistic information.

I have had my own well-meaning misjudgment a while back, when suggesting that Michele question the use of steroids for Ella, thinking that I was being "helpful" in raising a little point of information for her to consider. But I had no idea just how serious the Ella's medical crisis was, nor that Dr. Wheldon had made the recommendation himself, nor how delicate it might have been to manage that particular patient configuration. I accepted the appropriate chastizement from Dr. Wheldon, grateful that he was willing to be involved and continue his medical overview of Cpnhelp so that we don't go too far outside of bounds in our "helpfulness" and interfere in complex medical treatment.

As many of you have noted, this treatment is a tough one. We all need a place of support to get through it well. And sometimes we need to complain. But www.cpnhelp.org should not be the first place to ask questions about one's treatment-- they should first be asked of the treating doctor. As sick patients, brain fogged and befuddled, we offten don't take in the full information in one visit. I know this is especially true with Dr. Powell's patients, not only because we are often the most ill but also because he actually provides a lot of information to his patients. His efforts at patient information are unique in my experience. So much so, that it usually takes more than a couple of rounds to digest it all.

Please remember that, as help-mates here on www.cpnhelp.org, when we read another's questions we may be getting very partial or even distorted information. And remember that postings stay around, even when information changes so it may have unintended impact.

Now, the other side of the coin-- I am a firm, almost religious believer in the freedom of information. I do not want to create a chill here on free discussion. But I do want to encourage informed and responsible free discussion.

Without the web few would know about Cpn CAP treatment. It was due to ThisIsMS and then Dr. Wheldon's website, that I first heard about Dr. Stratton's work. I personally would be on disability by know if I had not found that information two and a half years ago. Many are now finding out about this approach through the development of Cpnhelp.org. As it says in our motto: Passing help forward. I really mean this. We are just taking what has been passed to us and continuing to pass it on to others.

The web has created a gold-mine of information, as well as a shining light for distributing information (such as through this web site). But it is also a gold mine, if you will forgive the mixed metaphor, of utter crap and misinformation.

Because I believe so heartily in the value of available information, even at the cost of having to learn how to sort through the vast amount of crap, and of free discussion of that information, I've had a very light touch on my editorial oversight here. Mostly we have been self-corrective, at least eventually, and have both kept to our purpose, the treatment of Chlamydia pneumoniae and associated diseasesi, and corrected impressionistic and misinformation that comes from the befuddled or the ill-informed.

On occasion such corrections have been a bit harsh or abrupt, but on the whole have kept us on focus. It's amazing to me how quickly personal mere text can get on both sides of a heated discussion, and those of us who are ill can have remarkably thin skins. I toss it off to porphyriai, noted for it's effect on reducing nervous system dampening, or on flagyli, noted for it's negative mood effects.

All this in mind, while I do not believe in censorship (and have done very little on this site to date) I do believe in responsible discussion.

• This means not second guessing the medical decisions of another's doctor without suggesting they ask the doctor first.
• This means not spewing one's own questions and doubts willy-nilly without gathering fuller information first.
• It also means not publishing every facet of your treatment changes you are being given by your doctor, knowing that others reading your posts may take them literally as recommendations.

The greatest boon of the internet is also its greatest dilemma: speed. It's easy to post information and questions, and easy to quickly snap back a response, before thinking it through or reflecting on the impact it might have. Ask me how I know. Through hard experience. Things can get out of proportion and get snowball very quickly on these webs of copper and fiber optics. It doesn't matter that we feel we are expressing something as a powerless underdog who no one, especially doctors, listen to. it can have big impact nonetheless.

So let's be mindful out there. Let's care for the doctors who are putting themselves on the line to help us. Let's care for each other by not responding reactively before we get enough information. Help support good community norms about discussion, even when, especially when, you have strong feelings!

Enough for now.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot!

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