Hello to all here at Cpnhelp-
I have not updated in quite a long time, nor been in touch much with the site. Life has been busy and good, and all the energy I have turned to living it, and seeing to my career and personal development. Had to get off the intense focus on illness and it's constant shadow. So a brief update.
Married my amor a year ago Valentine's Day! This was the culmination of a number of years of long-distance relationship and a life before lived too much alone. It's been a year of bliss and continuing. I am very grateful.
I've been doing a bit of writing again for my professional websites and blogs, as well as to develop some book projects. It comes in fits and starts.
I have been doing more international travel, with my wife of course (!), for my work. This has been very satisfying and rewarding, but also cumulatively tiring. Leading me to the next point.
I took a 9-10 month break from the CAP, staying on azith and general supplements as well as anti-candida maintenance. I was getting very little reaction to pulses by that time, and wanted to have a lower profile during the nesting period leading up to our wedding and forming a life together thereafter. But... into last fall and winter I noticed a cumulative fatigue, brain-fog and inflammatory reactions after exercise. I resisted the whole thing for a while, but clearly the cryptic load was building up, along with it's inflammatory process. I confirmed this by doing a pulse of Tini and had stronger reactions than I liked. Damn!
Along the way discovered that my thyroid balance was way off, and that I have a couple of methytlation defects that I'm working with. Taking time to get these in order.
Back to the basics. Increasing thyroid meds. Taking 800mgs metafolin two to three times a day (none of the reported detox reactions and little else noticeable from this yet) I'm currently doing short 3-4 day pulses of Tini until I run out, then will switch to metronidazole as my insurance doesn't cover what it used to. I'm also working gradually up on monolaurin and a biofilm protocol that Dr. Powell has found useful.
I'm sure a number here may find it disappointing or disheartening to hear that the the founder of this site is not a paragon of health. But I've always been clear here at Cpnhelp that this is not an easy treatment no guarantees, and there are more factors going on then we really know. We gotta grow up.
Honestly, I hate having to re-up my enlistment in the CAP, though I'm grateful for its help. Clearly, this stuff is not truly beatable for many of us but, like many diseases, is at least controllable if we are not cavalier about it. It's easy to get complacent, or just plain fucking tired of it being the center of attention for so much of ones life. But still better than the alternative, I must say. Just the fact that I could turn my attention to making a new life says something about how much I had been able to recover from four+ years on the CAP. Of course, I must credit my lovely wife-- I know just how lucky I am to have found such a generously understanding partner. Takes a while in life to get some things right!
I've also been following closely the emerging XMRV related research. I participated in one pilot study by Klein and Silverman at the Cleveland Clinic, looking for the virus in the urological system. No virus found for me, but I don't consider this to be definitive. They know so little about the conditions for measuring it accurately. I've not sprung for the full testing from Utah, as I think there's a lot shaking out right now and no standardization for it to make sense. But I think the difficulties getting well from Cpn, the tendency for many of us to have multiple infections, the other diseases that seem to co-occur, all these point to a common or interacting factor that degrades neuro-immune functioning, at least to me.
Rant coming: I'm absolutely apoplectic at the rank fraud, failure of public duty, diversion of funds, slow down efforts and downright stupidity of the CDC for 30 years in the US, and the equivalent in Great Britain. This has all come more to light as the entrenched forces marshall against anything new that might dethrone their dogma. That CFS/ME sufferers in UK are diagnosed with a mental disorder (somataform) and therefore barred from physiological treatment, is a crime.That many of us have already died from this and related diseases (go ahead, look at the mortality figures for this diagnosis) while people responsible for fostering research sat diddling their egos is worthy of public flogging.
I am guessing that I'll get a slew of responses to my catch-up. I can promise that I'll be able to respond to you all. Taxes are due and I'm way behind! I am delighted at seeing new names here, people starting the CAP, getting help from old-timers, some spirited arguments, and even a few apparently flagyl-fueled interactions. Par for the course, but please do watch the tone. It's easy to be reactive on the internet. THIS STUFF IS HARD ON US. No one is having fun being sick. Keep it in mind.
Love you all.