I found a new antifungal supplement called Kolorex (Horopito extract) which sounded good to me, and added this once a day, stopped zithi/doxyi and followed directions. In a week it was clear to me that the increased brain fog was due to yeast, as I had die-off reaction for the first day or two, then less generalized inflammationi and less brain fog. Okay, puzzle piece one. Since I was getting irritated eyes from the higher dosee of niacinamide (I had worked up to 3000mg per day and was now down to 2000) I decided to cut it back to 1500mg per day, thinking it might be irritating my urinary system. No difference in that yet.
I was still taking 150mg INHi, but could feel a gradual indefinable worsening of overall symptoms, so after a two week break I returned to zith/doxy. About then it was time for a pulse. So June 30th I started twice a day Tinii. I had about a day and a half of fatigue, aching everywhere, etc., then the miracle happened: I felt a big surge of energy, more physical sustainable energy than I'd had before and clearer thinking. I also had a noticeably a better effect from the thyroid supplementation prescribed by Dr. Powell, as if it wasn't operating against as much drag in my system, or as much cellular thyroid resistance.
The Kitchen Test- At about this time I started ripping out my kitchen. Just the very fact that I got motivated to plan and initiate this project, when i had hated the kitchen 8 years ago when I moved into the house but could do nothing about it, was a sign of having improved on the slow train in the CAPi. But now I was actually doing sustained physical work (fortunately with a young man who did the main heavy lifting!) and sustained planning and problem solving, and sustained running about to Home Depot and harware stores--- well, I haven't been able to do this kind of sustained project for about 9 years! Not only this, but I was seeing my normal client load (about 30 hours a week), planning a workshop, managing a web site, and on Tini!
In fact, I felt so good on the Tini that I decided to stay with it as long as possible. So I was on the pulse from June 30-July 14th. Two solid weeks of twice a day (1000mg). This too was unthinkable even 6 months ago for me. I'd turned some corner here on my Cpni load, that every day I had more energy, more cognitive power, glimpses of my old self. While I had some deep joint achiness in hands, knees and some back areas, I actually had less pain overall, and no post-exertion pay-back! In other words, after a day of hard physical labor (and i was out of shape for this) in the kitchen, I had normal muscle tiredness and soreness, but I wasn't flattened, i was ready (after a slow start) to get going the next day, and had no lingering soreness the next day. Unbelievable! Unheard of!
I had thoughts of staying on Tini permanently (a la Eric Johnson) but at the two week mark decided to take a break as the appetite suppression was significant. The day after stopping I got a wave of post-Tini inflammation and reaction. The rest of the weekend I continued to have physical and mental energy, but I did notice that the post-exertion impact was higher in terms of inflammation and muscle fatigue at night. I'm still having better response from the same dose of thyroid supplement.
Ah, and I almost forgot: during the Tini pulse, about 5 days into it when I usually would have stopped the pulse, my chronic, unrelenting urinary irritation (interstitial cystitisi symptoms) and prostate swelling and irritation lessened and by end of the 14 days had virtually disappeared! I notice that day 3 after stopping the pulse, some of this is returning.
Of course, I have some speculations, and they are only that at this point until I get some feedback from Dr. Powell, about what this all means:
- It's clear that a big part of my plateau was a build up of intestinal candida which other supplements and meds (fluconazole 2x/week, probiotics, etc) hadn't addressed adequately.
- Taking the brief break on abxi helped me settle out and regroup, and didn't result in fall back, as did returning to the basic supplements.
- The sustained Tini pulse suggests a couple of things-- one is that I had finally reduced enough Cpn load (general and cryptic) after almost 2 years on CAP that I could do this profitably. Second is that some symptoms or tissue infectionsi are simply not reached in a shorter pulse, perhaps because those tissues or layers take more time to reach minimal kill concentration, or it just needs longer exposure to overcome efflux pumps, etc.
- The sustained pulse effects also suggest to me that the build up of cryptic Cpn is not a benign or minimal process, ie that the low-metabolizing state is not just problematic from its potential for reinfection. That it is causing some kind of chronic inflammatory and energy-cost symptoms. There is more to this than we know.
I have always thought that my urinary system and prostate was the original reservoir for reinfection, as I'd had my first prostate infection and urinary problems at age 18-- highly unusual age for this-- and had recurrances of this over the years. Treatment on single, broad spectrum abxi is what probably initiated all my candida problems, only suppressing the urinary symptoms which would flare periodically as my chronic fatigue and fibro got worse and worse over the years.
Next step: consult with Dr. Powell on this data set and see what insights he has to add, and decide on the next course of attack!
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CAPi for Cpni 11/04. Dx: 25yrs CFSii & FMSii. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Jim, it is great that you
Jim, it is great that you are doing so well. Or, at least, progressing again.
Now, for a really scientific test of your recovering powers, I have this bathroom on the second floor . . .
Seriously, I think your conjecture about the prostatei is right on the money. C. Everett Koop's website had a stat indicating that 1/3 of men over 50 have an 'aseptic' prostatitis. In fact, I thought that my CFSi was just a return of recurrent prostatitis for quite a while -- same feeling of utter exhaustion.
Ron
On Stratton protocol for CFS starting 01/06 (NE Ohio, USA).
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Ron
On CAPi for CFSi starting 01/06 (NE Ohio, USA)
Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.
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Jim, You sound like Dr.
Jim, You sound like Dr. Frankenstein, the Frankenstein monster, and Bob the Builder all rolled into one package! It's wonderful that you had the drive to start your kitchen project and actually finish it in such a short time AND do everything else in your life AND under the influence of DRUGS. Impressive. You don't even sound like the same guy who was blogging just a few months ago.
You and bleu have both been addressing Candida more seriously lately with great benefit. Candida is such an innocent sounding name...we should all collectively write new lyrics to the song (repopularized by Tony Orlando and Dawn the last time around). It should be about killing Candida, and the style should be hard and grinding hip-hop...some really violent and abusive stuff we wouldn't want our kids to listen to.
Keep stompin' on those bugs, Jim. It seems like your bug-stompin' boots are getting more and more pointy-toed all the time. Cypriane
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
It is so interesting,
It is so interesting, Jim...pls continue after Dr.Powell visit.
Prague, The Czech Republic, On Wheldon protocol for Cpni and Mycoplasma since 02/18/2006.
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Prague, The Czech Republic, On Wheldon protocol since 02/18/2006, CFSi and many problems 30 years (cpni and mycoplasma), 3rd year on protocol- doxyi, azi, tinii pulses
Great news, Jim!Â
Great news, Jim! Finishing your kitchen remodeling is a huge milestone! I know what you mean about not feeling well enough to tackle such a project, but when you reach that point of motivation and energy it is truly a day to mark on the calendar. All that[which is plenty] and the rest of your daily work/duties/website mangement, etc...An amazing improvement.
Keep us posted on your contact with Dr. Powell. Very interesting developments!
kk2 :)
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Began Wheldon Protocol for rrmsi October '05. Currently OFF all abxi since June 26, '08 due to severe porphyriai. Added LDN 4.5mg qhs October '07. All supplementsi.
Hi Jim, You are such an
Hi Jim, You are such an inspiration to us here.
Although Ella does not have a prostrate, we have long thought that the reservoir for Cpni is in her bladder, as not only has she suffered from recurrent infectionsi but also it seems that most of her symptoms happen in that area of her body, which is especially noticeable now that her overall condition is better than it has been.
Your experience is really valuable to try and make sense of what is happening to her.
Thanks
Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMSi
Sussex, UK
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Candida, I prefer to just
Candida, I prefer to just call it Fungi, as I dont really like name calling, and I suspect that its more than one strain. I will blog soon, but am a little aprehensive, I feel so dame good at the moment i dont want to say it, and then fall back as has happened oh so many times in the past. This game as you all know is like shifting sands, clearing up the mess is much harder than can be imagined. I am currently doing lamisil 250-500mg per day, (mostly 250, but 500 works a treat). Nystatin about 10 tabs a day. fungizone a swig a day. also supp potassium as this is sorely needed and has sorted out my heart symptoms. This time last year I could not tollerate the sun, I now have a sun tan (not bad for a ginger) and not had a panic attack for ages. (last year I was well iffy.) So I have been doing heavy antifungals now for like 9 months. I am still enjoying benefits and will continue all things willing for another year.
bleu
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Diagnoised 98 with ReA (reactive arthritis), Cpni found in eyes! after2 years of study and some trials with Cipro and Biaxin ReA passed. since then colon complications. Did lamisil and fungizone for one year recently, big improvement. Yet still colon probl
Jim, I don't think I'd
Jim, I don't think I'd better try your kitchen test, because David built it all in the first place! Lovely job as well, with dovetailed joints, reclaimed old pitch pine, the lot. But how on earth did you manage it in such a short time, with still doing your normal work load? You must be feeling incredibly better.........Sarah
An Itinerary in Light and Shadow Berger.
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Oh, it is not at all done!
Oh, it is not at all done! Sorry to leave the impression that I somehow finished it in such a short time. It is completely torn out and all the new lighting in. This took two weekends in a row with a great young workman doing it with me, and doing all the more skilled electrical. And given the schedule of the plumber, window people and my traveling coming up, likely the whole project won't be finished until mid-September! I'll post a pic of the present state of affairs and you'll see the mess!
Bleu- I do hope you'll blog your story some time. You went through the CAPi without really knowing it, just in your stubborn search for relief, and are now dealing with the fungal sequelae of the heavvy abxi program you were on. I think a summary of what happened to you, your treatments over time and how they affected your symptoms, and what the symptoms were for the post-abxi fungal problems and your finding the right meds for these, all would be very helpful to us. I'm so glad you found the path to feeling better, as I recall following your struggles on the Inflammationi list along with mine. Comrades in arms.
Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei & Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
The actual evidense can be
The actual evidense can be seen at http://www.cpnhelp.org/?q=image/tid/149
Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei & Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Oh! September, you say?Â
Oh!
September, you say?
You should have seen ours, though. It was once a bedroom when the house was all flats. The landlady, who had the ground floor flat, had a taste for purple and shocking pink and the carpet reeked of mouldy old pekinese dog wee..........Sarah
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 Great news Jım and
Great news Jım and thanks for your detaıled post. The kıtchen stıll needs a lot of work and money though.
Good luck,
Guner
On CAPi's protocol for Cpni in PPMSi since June 2004
Currently: Doxyi/Roxi, Flagyli pulses
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On CAPi's protocol for Cpni in PPMSi since June 2004 - Currently: Doxyi 100mgx2/day - Roxyi 150mgx2/day - Flagyli 500mgx3/day (Continuous protocol since sept.2006)
JimHad no idea you were not
Jim
Had no idea you were not feeling well, you never appear to have brain fog from your posts. So glad it has passed and yours is an amazing story - can not believe how much you are doing - its wonderful!!!!!!!!
On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , LDNi 2004
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On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.
Been there, still doing
Been there, still doing that, been meaning to do it for twenty years, but still not finished. What a nightmare, especially the kitchen. I suppose this is a good excuse for not cooking for a couple of months.
Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMSi
Sussex, UK
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
 Looking forward to
Looking forward to tinii...
Gee, and I was kind of getting to like that 'industrial look" in the kitchen...
As with all projects like these, moving ahead is waiting on something else, so it will be slow to finish.
I can't believe I'm actually saying this, but I may need to be back on Tini to do the work, as I've had some return of inflammationi since the long pulse finished. Could be the post pulse clean-up from the immunei system, but doesn't feel good. Also, the stress-inflammation cycle is crystal clear for me-- every time I get into a high stress mode (kitchen coordination while getting ready to teach a major 4 day intensive workshop, pay bills, etc) I feel significant inflammatory reactions. Makes me wonder if Tini has some anti-inflam properties. Who would ever have thought that I'd reach a point in the CAPi where I'm looking forward to being on Tini and feel better on it than off it? Not me.
Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei & Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Maybe the inflammationi is
Maybe the inflammationi is your muscles bulging from all the work :) You must really have turned a corner to actually be craving the Tinii. Your dinner menu in your new kitchen could read,"Tini for dessert." Yum!
Lexy
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--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi