Jim K's blog

Checking in

Submitted by Jim K on Tue, 2011-03-22 23:17

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.

Hazards of a Faux-CAP

Submitted by Jim K on Sun, 2009-02-01 10:49
I don't tend to blog much these days as either changes are slow at this point, or I feel I need to wait until any trends I notice are clear and confirmed over time. Over the last 6 or 7 months I'd been struggling with increasing brain fog and fatigue, very frustrating and very puzzling at this late date. Although I have not gotten as much improvement on these symptoms as I would like, the CAP has certainly restored me to functionality in this regard, so the decline in these improvements really threw me. And this was occurring despite having very mild reactions on 3 or 4 pulses that even included 300mg a day of INH!

All Multi-Factored Up

Submitted by Jim K on Mon, 2008-09-01 15:52
As I'm in experimental mode a lot with the CAP, I don't report in often on my own protocol. This is partly because I like to wait a bit longer to see how things play out before posting observations. And partly so that people new to the CAP don't get confused that these experiments of mine are any kind of example! So here's the warning: this is not intended for anyone new to the CAP, and is not a model of anything anyone here should follow! As you will see, I'm not always the best example to follow anyway.

Number this Pulse? CFS/ME, Cpn & CAP: a complex thang!

Submitted by Jim K on Mon, 2007-12-03 09:58
We’ve had a big influx of members with CFS/ME in the past year, especially with my article appearing in a web CFS newsletter. Getting on the CAP is confusing enough, and difficult enough for this group, so I have been reluctant to report my own particular experiments and treatment results so as not to add more confusion. My story on the Patient Stories pages is accurate and honest: I report a 60-68% improvement using the CAP for Cpn, and that some particular symptoms have not improved as much as I would like. But it begs the question about what can someone with CFS/ME expect from Cpn CAP treatment?

Test image

Submitted by Jim K on Wed, 2007-10-10 18:56
If you click "Attached Images" in your blog entry, under the text entry window, you can easily load an image from your computer (Browse button) without going into the gallery. Like this one by Sarah Wheldon-

Taking a break from continuous

Submitted by Jim K on Wed, 2007-07-25 00:29
I've upped my INH to full dose now, which engendered more sacroilliac and lumbar back ache, but seemed otherwise manageable. But I've decided to take a break on the continuous tini which I've been doing for a couple months. I'm on vacation and noticed with the increase in sunshine (Vit D?) and increase in INH that I have felt continually cruddy. Not smart on vacation! So I'm interested to see what the pattern is just on the regular antibiotics. I'm particularly curious about post-pulse type symptoms (apoptosis and cleanup) and cycling, which have been impossible to discern on a continous protocol. Always the fine balance between killing the buggers and having time to actually feel better!

My Discontinuous Continuous Protocol

Submitted by Jim K on Sat, 2007-06-16 11:58
I haven't updated in a while as I hate to report day to day changes any longer when I'm on an approach that has no real conclusions for an extended period of time. I'm still "in progress" on this continuous protocol (CP), but have enough time put in to give a summary and update.

First, let me note up front that I've been on the CAP since 11/04, pulses since about 2/05. My Cpn load was so high (I've had CFS for so long) that I had to go very gradually. It took two years to get to my 60-70% improvement and plateau from the pulsing approach. I could not even imagine a CP CAP until just now.

Oh Darn, Flagylation

Submitted by Jim K on Fri, 2007-05-04 00:19
I've been doing continuous tini, then switched to flagyl about two weeks ago. I was marveling in my last post that I was able to tolerate flagyl when I never could before, and actually felt more energized.

Well, I've had an accumulation of fatigue, depression and profound brain fog. It took me a whole afternoon to do a writeup that should have taken me 15 minutes. I would stare at tasks I had to organize, and couldn't get my mind to go the next step. I attributed this to the effect of the continuous protocol, a build up of die-off, but it didn't respond to antiporphyrin measures.