Jim K's blog

Checking in

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

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 CAPi 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 INHi!

All Multi-Factored Up

As I'm in experimental mode a lot with the CAPi, 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.

Does the signature show up in my blog post?

We shall see...

Not in preview...

By God, look at that! Once you post your signature will appear in all it's glory. 

No more posting a comment to get your sig to show! Will wonders never cease?

He Hits, He Scores... Notes on an on-going experiment

Blog 5/08
Warning: this is a lengthy one as it's been a while.

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

We’ve had a big influx of members with CFSi/ME in the past year, especially with my article appearing in a web CFS newsletter. Getting on the CAPi 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 Cpni, 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

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

I've upped my INHi 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 antibioticsi. I'm particularly curious about post-pulse type symptoms (apoptosisi 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

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 CAPi since 11/04, pulses since about 2/05. My Cpni load was so high (I've had CFSi 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

I've been doing continuous tinii, then switched to flagyli 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. 

Continuous Flagyl??? Yes!

I never would have believed this a year ago, but I've been taking Flagyli for the last three days of my continuous protocol. Early on the nausea from Flagyl made me switch to Tinidazole. But I decided to try some Flagyl and noticed that it gives me more energy and clearer thinking than the Tini. I think there is reason to believe that it is a bit more effective than the Tini-- I have increased sinus drainage, some increased joint pain and the energy increase. Maybe there has been some bacterial resistance to Tini, from having used it for two years, that there isn't to Flagyl. Who knows? At any rate, I'll see if I can maintain continous flagyl, as it's only three days on the switch. Sometimes reactions build up.

Continuous Treatment

I haven't blogged my treatment for a while, as I've been waiting to see if I would stick with a shift in protocol. So far, still with it, so thought it might be time to report in and get other's thoughts. New folks, please read this as informational only. It does help clarify Dr. Stratton's use of the continuous rather than pulsed protocol, but the rest of the hypotheses here are presented as my own speculations, not scientific fact.

A Pulsing Commentary: to pulse or not to pulse,; pulse 23 report; stopping Rifampin

I know the title sounds a bit like a Romance novel, but couldn't resist...

I've just finished Pulse 23 which went okay, but was unfortunately timed with doing my own installation of a wood floor in my new kitchen. This resulted in pretty severe lower back inflammationi and muscle spasm, which I don't thing would have been so bad without the Tinii die-off and inflammation. My chiropractor has benefited from this. Heavy physical activity at the same time as a pulse is asking for trouble-- you heard hear first, again!

By the way, I stopped the Rifampin with Dr. Powell's permission. After about two months on the 300mg dose I was feeling worse and worse, like I used to feel before my Spring improvement. His feeling is that this is due to its dual effect on Cpni and on mycoplasm k., another rather vicious, ubiquitous and insidious inflammatory bug, and told me to take a break. So no more for now.

This, and thoughts stimulated by Hoser's questions about pulse frequency, and struggling to manage my daughters very difficult case, has led to some reflections. These are my own thoughts only, and not recommendations for anyone. Just thinking out loud (or is that "out lout?"). There are basically two methods of using Flagyli/Tini in a CAPi:

Full-dose pulses: This is the more usual CAP outlined by David Wheldoni. It emphasizes the importance of time in between the big apoptosisi hit of Flagyl/Tini, allowing tissue recovery from inflammation, porphyrin dump, and cell replacement time. Conditions which require longer time to clear the tissues and regenerate (such as neurological infection) require longer spacing between pulses. Other conditions can shorten the time between pulses, but two weeks seems to be a useful "bottom line" recovery time for most conditions treated here.

Pulse 22 started: Country-Western Style!

This is mostly to mark that I'm day 2 on pulse 22 so I don't forget to keep record. This one is not as bad as the first one on Rifampin (pulse 20) but more of a hit than the last pulse in terms of inflammatory pain. I'm still at one capsule of Rifampin per day as I haven't worked up the gumption or masochism to go to full dose (2 caps per day) yet.

Awoke this morning hurting all over, and thought I'd be misreable for the rest of the day. Did one of Raven's Famous Epsom Salt Baths and it cleared all the hurt like magic. Now, if it would just work on clearing the hurt of my personal life... go soak my head? My heart? Oh, oh. Sounding like a country-western song coming on:

Oh I wish my Epsom Salts could cure my aching heart, just like the way it cures my aching joints...

The news from Lake Pulse Begone: Pulse 21 finished

I just realized that I never commented on the finish to this pulse. The reset of the pulse after the Vit C flush was not uneventful, but not unexpected for my 'average' pulse.

I carried through the Thanksgiving holiday and continued for a total of 6 days. I had a wave of pain and inflammationi after each dose, and one evening where I was completely wiped out and irritable (porphyrins?). Did some powdered charcoal and added Yaemon Chlorella to my regime which may be helping.

Post-pulse- some periods of severe irritability-- yelling and cursing at mechanical objects that were not "cooperating" by doing what I wanted--- which I attribute to post-pulse apoptosisi and dump of porphyrins en masse into my blood stream. Now I'm on vacation and enjoying the let-down feeling as I slow down and relax.

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