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Jim K's blogDoes the signature show up in my blog post?Submitted by Jim K on Sat, 2008-06-21 07:18.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 experimentSubmitted by Jim K on Fri, 2008-05-09 22:52.Blog 5/08 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 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 imageSubmitted by Jim K on Wed, 2007-10-10 17:56.
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 continuousSubmitted by Jim K on Tue, 2007-07-24 23:29. 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 tinii 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 ProtocolSubmitted by Jim K on Sat, 2007-06-16 10:58. 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 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, FlagylationSubmitted by Jim K on Thu, 2007-05-03 23:19. 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!Submitted by Jim K on Thu, 2007-04-19 19:21.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 TreatmentSubmitted by Jim K on Sun, 2007-04-08 09:53.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 RifampinSubmitted by Jim K on Sun, 2006-12-31 11:45. 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!Submitted by Jim K on Sun, 2006-12-10 22:24.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 finishedSubmitted by Jim K on Tue, 2006-11-28 12:07.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. Pulse 21: Tini this time- A kind and gentle startSubmitted by Jim K on Mon, 2006-11-20 07:45.I went into pulse 21 with some trepidation, having been slammed by pulse 20. Pulse 20 was the first one I had done with the addition of Rifampin (still only up to one capsuye a day). I mentioned in my last blog that Dr. Stratton told me that the addition of Rifampin created a 'physiological conflict' for the Cpni ie leaving it no pathway of escape, so I had more die off. I also had more post-pulse effects, a lot of apoptosisi and inflammationi. I finally figured out that I also had a build up of porphyrins as my anti-porphyriai efforts had been lax. I hadn't seemed to need them the prior couple pulses, but with bigger die off, bigger porphyria. So just before I began the pulse I did a Vitamin C flush and felt much better after. My body soaked up a lot of Vit C before gut clearance, at least 15 grams, so I was probably depleted in this as well. Really brings down inflammation and brain fog! Major Post-Pulse Slam, And Some Useful UnderstandingSubmitted by Jim K on Thu, 2006-11-02 17:44.In my last blog I reported that, despite having had increasingly mild pulses, this last (21st) pulse was surprisingly painful and fatiguing. I speculated that it might be due to the addition of Rifampin having some kind of synergistic effect, or perhaps creating more cryptic Cpni to kill. Last night, my second night post-pulse, I had the biggest post-pulse "slam" I've ever experienced: sudden and severe irritability, red and burning eyes, acute mid-back muscle spasm and pain, a surge of all-over inflammationi. My irritability was way off the charts, and to I had the good judgement to decline to have any important conversations or make any decisions last night! All I could do was sit against a heating pad for my back, take sleep meds and ibuprophen, and hope. This morning, although I was very loggy at first, I felt much better with glucose and 2000mg Emergen-C, especially better as the day went on. What on earth was that? Update: Rifampin, pulse 20, plus flagyl to tini switcherooSubmitted by Jim K on Tue, 2006-10-31 16:37.I've been gradually ramping up on the added Rifampin. Worked up to one pill every day in evening, and then last weekend went to two (the full dose). The "water in the eardrum" thing finally left. It was quite intense for a week or two, and sometime last week I noticed that I didn't notice it any more. I also decided to do a pulse starting last Wednesday, and decided to start with Flagyli just to see how I tolerated it. I did Flagyl for 3 days, then switched to Tinii as I ran out of Flagyl. Observations: The good news was that I had only a little nausea at first with Flagyl, quite a change after having such prorfound nausea early in the protocol. I was expecting a little more energy on Flagyl, as had sometimes been the case, but actually found more energy when I switched to Tini day 4 and 5. So, I'm guessing that some of the reports of feeling one better than the other when tried in series (someone reported more energy from flagyl after switching from tini midstream) may be a matter of hitting the bacteria from a second direction, no matter what is done first and second. |
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