Cpnhelp.org

  What's really "off topic?"

While I have not been on Cpnhelp much, preoccupied with family concerns, I try to keep my finger on the pulse here. I've had some emails recently by long-time members who want to post about their experiences but have been hesitant to do so. Why? They have run into limits with their improvements on the CAPⁱ and have been pursuing adjunctive or alterative treatments for their primary diagnosis. Cpnhelp.org has as its mission the treatment of Cpn via CAP specifically, and they have been concerned about reactions to posting about their experiences with treatments that have followed a CAP of limited success, or that they have added to their CAP.

Now, this is not really a new thing here, and a lot of people have posted in their personal treatment blogs about additions to the basic CAP, of protocolsⁱ that are Cpn related but do not necessarily use one of the main CAP protocols such as Dr. Powell's, and various posts in the "related interest" forum thread for discussions not directly related to the CAP. We try to be inclusive enough of legitimately related issues while keeping our focus on Cpn and CAP issues predominantly.

One of the questions seems to me to be, where is the line between information and advocacy? Historically our community culture has reacted strongly to posts that have the flavor of advocating or advertising an alternative route to treatment when it has the appearance of self-interest or advertising, and especially when the poster does so clearly uneducated about the information and purposes of Cpnhelp. On this, we are a "self-governing" community, and it doesn't take long for members to manage such posts and posters.

The more gray line is where alternative treatments for a Cpn related condition are presented. If they are presented baldly, even if only for information, without any reference to Cpn or the CAP, then they are in the wrong place. There are websites all over for MS treatments, CFSⁱ treatment alternatives, fibro, etc. Such presentations belong there, not on Cpnhelp.

But... and an important one in my mind... but what about site members who have given a solid trial of the CAP without much success, or with a ceiling to their improvement (I'm a case in point) or, God forbid, a real worsening of their condition? I have always advocated the importance of negative reports here. I'll repeat, this is not the MP, we have no ego interests to protect, and we actually need to know when things don't work.

It's also clear that in many of the complex and mysterious illnesses we are dealing with here, issues of cause and effect, multiple causative factors, primary or secondary causes are all unknown. If you have Cpn and viral loads, is it the immuneⁱ suppression by Cpn infection of the immune system that opens the door to the viruses? Or is it the viruses that open the door to Cpn? Or is it some third factor such as genetic mutation that opens the door to both through a direct or even indirectly related factor? We don't know. 

A case in point is the recent discovery of the XMRV retrovirus in a remarkably high percentage of Chronic Fatigue and probably Fibromyalgiaⁱ patients has raised hope for many of us that a real cure may be in the works. If this indeed is the main causal factor, it suggests that many secondary infectionsⁱ, including Cpn, could be a result of the immune suppression by the XMRV virus. 

Another case in point is the use of stents to improve blood flow in the brain for MS. There are arguments that the blood flow anomalies corrected by these procedures could well make for greater susceptibility to bacterial and viral infectious agents in the nervous system. Thus MS patients in this sub-category could have Cpn infection, demonstrate all the expected die-off reactions and the like, and yet not improve or worsen in their MS even as their infectious load goes down from CAP treatment. We have no good quantitative measures of Cpn load, or of the specific impact on MS other than direct MRI's of diminishing lesions.

Would I want to hear that a long-time member with limited or lack of CAP success had improvements with antiretroviral treatment? Hell yes! Would I want members to know that someone who’s MS had declined on the CAP had halted disease progression with a brain stent? You bet! Is it crucial that people feel free to post and not get flamed for being not directly Cpn/CAP related? Absolutely.

Another big concern has been to not confuse or mislead the new people to the site. We all know how difficult it is on this rather sprawling website for new people to get oriented and sort out the main recommendations from the experiments or discussions that are ongoing. I think we have enough support for guiding people to not worry about this too much. Anyone using the web knows they have to do a lot of sorting out. We have welcome letters, "Getting Started" tabs, caring community members and other assists to deal with this.

So, my suggestions:

• We keep these distinctions in mind when posting and replying. 
• Posting personal experience in a blog is one place that is always appropriately yours. 
• Posting an alternative treatment in the "related" or "off topic" forums here is also appropriate. That's what they are for.
• If you haven't actually done a CAP for Cpn, so that your report is not actually relevant to CAP treatment (or treatment failure) then report elsewhere.