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.

For those who have come to Cpnhelp since the last protocol revisions, the original Vanderbilt protocoli was to build up to continuous use of all the anti-Cpn agents. The shorter time periods for treatment you read in the patent case reports are due to the use of a CP. But this is a very challenging treatment and patient drop outs were common. It also takes more monitoring by the treating physician. Dr. Stratton, in the last revision of his public recommendations, gave his blessing to the pulsed method as it is easier to manage, covers the exigencies of the different conditions being treated in terms of allowing adequate recovery time between pulses, and allows timing of pulses to manage normal life demands. The original handout, superceded by what is in the handbook currently, can be found HERE.

To review or re-CAP:
I started gearing towards continuous Tinii after a conversation with Dr. Stratton. We were discussing how for some people pulsing reaches a pattern of diminishing returns after a certain point, with milder reactions during pulses and no improvements evidenced between pulses. He said that there is much unknown about tissue penetration and tissue concentrations of the bactericides needed to reach the tipping point, and blood concentrations are not a good measure of what actually gets into particular tissues. With a continuous protocol, CP-- actually the original Vanderbilt protocol built up to continuous use of all the agents, you will reach tissue saturation, equilibrate into all the tissues, and likely overcome the natural efflux pumps that try to get the abxi out of the cells. As I had reached a plateau on my improvement, this seemed like the next step, and Dr. Powell gave his blessing. By now I was taking 4000-mg Vit. D daily.

  • 2/13/07 I added 500mg Tini/day. Reactions stronger than expected from previous pulsing, but manageable and diminishing over time.
  • 2/19/07 I added a second dose for 1000mg Tini/day.Reactions stronger than expected from previous pulsing.
  • 3/4 & 3/21/07 I was experiencing "bad Tini days" i.e. stronger than expected reactions and not diminishing. I guessed from Red's reports that the added D was making the pulses stronger, so...
  • 3/35/07 Dropped back to 500mg Tini/day until reactions eased.
  • 4/1/07 Back to 1000mg Tini/day. Tolerated better.
  • 4/18/07 In a fit of optimism I switched to 1000mg flagyl/day to see if the affects were any different from the tini. I knew that I could now tolerate flagyl. I'd always used tini because for the first two years flagyl would make me violently nauseous, but recent experiments gave me no worse nausea than the tini now.
About this time I also was doing near-infrared sauna, about 20-minutes twice a day (I know, I know, but I didn't see that the D, flagyl and sauna were potentiating each other then, only know that now).
Over the next two weeks I was increasingly brain fogged, depressed, flattened affect, lethargic.
5/3/07 I was completely flattened and getting incapacitated so I stopped the flagyl and Vit. D completely.
Took at over a week to clear the depression and flatness.
Check-in with Dr. Powell who noted that the amount of sauna alone that I was doing could produce considerable die-off, and he recommended using lower Vit D as it clearly potentates both sauna and flagyl/tini, and with many patients he was taking them off the abxi as the combo of D and sauna was producing more than enough results. In other words, his polite way of saying that I had unwittingly overdone it!
We agreed that I would drop back to 1000mg D, do less sauna, and take a more gradual approach to the continuous.
  • 5/14/07 Started again at 500mg Tini, only 1000mg D. Sauna for 10-15 minutes only a couple times a week.

By the way, my "sauna" is 4 brooder (near-infrared or NIR) lamps on porcelain clip on lights in my bathroom. This is the cheap-o Ace Hardware sauna. It turns out that this NIR (as opposed to the far-infrared or FIR) may actually have a more potent effect on the immunei system and on bacteria than the FIR. Dr. Powell uses only one NIR lamp to amend the FIR sauna, or two NIR lamps one front and one back, in a bathroom or small closet for up to 30 minutes twice a day. So with 4 lights this was really overkill unless one adjusts for time.

This has gone much better. I still have mild aches and periods of fuzziness cognitively, and lowered appetite, but quite manageable on a day to day basis. This demonstrates to me that continuous dosing is needed for me to get at tissues that I haven't been able to clear otherwise. Interesting after all this time on the CAP. Notable is that I have decreasing discomfort in joints, hard areas to clear completely without continuous dosing according to Dr. Stratton.

Discovered (by running out of one product and changing my anti-candid maintenance stuff) that I also had built up an increased Candida load judging from the die-off from this (a familiar and different die off than from CPn which I won't detail here).
  • 6/12/07 Added second tini for 1000-mg/day. Main symptom is increased nausea and low appetite, some increased aches. Only a couple days into this, so no conclusions of any kind yet about the impact of continuous full dose. As I said, a long term project.


What I've learned?

  1. Don't do this until you really well-tolerate pulses!
  2. Continuous dosing does appear to get at tissues not reached as well in shorter pulses.
  3. Vitamin Di does potentiate bacterial kill for both bactericides and for the affects of infrared sauna.
  4. Infrared sauna, especially when used with D, niacini and other adjuncts, is a powerful antibacterial and immune boosting treatment that produces clear Cpn die-off reactions.
  5. Don't count your chickens....


That's all folks!

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

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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

Thanks for sharing Jim, I

Thanks for sharing Jim, I will direct my doc to your experience as well.  He is awesome, I will post something tomorrow or Monday as to my progress & the official start of abxi Wheldon protocol.

Blessings

R

CFIDSi/ME, FMSi, IBSi, EBVi, Cpni, Babesia, insomnia (take melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), peri menopause, NAC 2 gm

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#14 1000 mg X 5 days 9-19-08

Jim, this is very helpful

Jim, this is very helpful to all of us. Do you think you are more than 60-70% better after the last 6 months of that intense therapy?
Barbara
Multiple sclerosis, on the Wheldon protocol since February 2004, EDSSi 0 for over 4 years

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Cured of multiple sclerosisi, on the intermittent Wheldon protocol since March 2006, EDSSi 0 for over 4 years.

You are a rock star!  I did

You are a rock star!  I did a ten day flagyli pulse a couple of months ago and felt the same as you said; it definitely got to places a five day pulse had not.  I did a normal pulse last time, but think you've convinced me to go for another ten day or longer run.  I've been hoarding extra pills for just such an experiment.  You go, Jim!

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

  This is so helpful

 

This is so helpful Jim, your report makes me wish I could sort out my reactions and document them as clearly as you do, most of the time I just muddle through and guess.  At least I have at last learned not to count my chickens......

Do you think it would be useful to include in our reports a scale to show what we mean when we say we've improved?  The MSi members use EDSSi which clearly shows the progress they've made.  There's one here

 http://www.drmyhill.co.uk/article.cfm?id=6

but it isn't a very good example, you might know of a better one.

 

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

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Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

High Dose Tinii/Met Pulse ?

High Dose Tinii/Met Pulse ? Jim have you considered using Met or Tini at 2g per day to get into those difficult to reach places ? (other CAPers please note this should be considered only after at least 2 years of standard pulses).  Met/Tini are used at high doses so this dosage is not untested.  High dose Met/Tini should give higher concentrations in many tissues but the die off and toxic reactions could be significant !  There will be data on the levels of Met in the literature but with CPni we are not sure where the bug is residing, so this would be an empirical test.  I suggest trying one day as a first high dose pulse.  As you aware I do not like people using Met/Tini on a continuous basis as the risks are significant.  However this high dose approach is likely to acheive a similar die off but with less risk.  I will research this in a year or so if I wish to try this approach.   ...   Mark.   

Mark Walker - Oxford, England.

RRMSi Nov 91, Dx 97. CFSi Jan03. Copaxone + continuous CAP (NACi, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abxi from June 07 onwards.

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Mark Walker - Oxford, England.

RRMSi Nov 91, Dx 97. CFSi Jan03. Copaxone + continuous CAPi (NACi, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abxi from June 07 onwards.

Mark- I had considered this

Mark- I had considered this route, and may shift to it at some point experimentally, but I really didn't want to deal with such a big hit and recovery. Dr. Stratton has seen no problems with continuous dosing for 2-3 years, so I'm taking my cue from him on this in terms of actual clinical experience.

I actually don't anticipate that I'll have to do continuous for more than 6 months to a year. I'm hoping that a course of the continuous tinii will make a major difference, and I will eventually then be able to tolerate a course of some of the very potent antichlamydials like rifampin or even rifamycin. 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

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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

Does metronidazolei

Does metronidazolei suppository work systemically as well as taken by mouth? Continuous combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgiai, interstitial cystitisi, sinus: minocycline, Zithromycin, Flagyl

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Anything you take on mucous

Anything you take on mucous membranes is absorbed a little, but antibacterial suppositries are considered locally active in the vagina or rectum where they are applied. marie On CAPi since Sept '05 for MSi, RA, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxyi 200, Azith 3x week, Tinii cont. since April '07, all supplementsi. "Color out side the lines!"

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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Currently on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, back to pulses of flagyli winter '08 all supplementsi. "Color out side the lines

No tastebuds

No tastebuds there! 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, antivirals, heavy metals chelation, LDNi, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGi/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

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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. 

And no nausea. Combined

And no nausea. Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgiai, interstitial cystitisi, sinus: minocycline, Zithromycin, Flagyli

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Jim, I have the same nausea

Jim, I have the same nausea problem with metronidazolei. Do you know what the minimum daily dose of metronidazole would be on a continuous schedule? Last year Dr. P had me on contiuous tinii 500 mg a day. I found I got the best results with Flagyl, and that taken continuously not pulsed.

Combined Antibiotic Protocol for chlamydia pneumoniae in neck muscle pain, insomnia, interstitial cystitisi, sinus, fatigue, weak constricted voice, dry eyes: minocycline, azithromycin, metronidazole

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Janice- As I understand it,

Janice- As I understand it, you start at one per day and build up to three times a day with metronidazolei (1500mg). Metro has a shorter half life than Tinii and to keep saturation levels up you need more regular dosing. Tini is commonly used at 1000-1500 mg per day at "full dose." But all this is "as tolerated." It took me a while at 500mg a day, the constant dosing is a different story once you get beyond the pulse number of days, and build up to the 1000mg per day.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

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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

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