Blog 5/08
Warning: this is a lengthy one as it's been a while.
It’s been quite a while since I posted a blog. I’ve been experimenting with some things and don’t like to report too much until I have a clear trend going, and that takes months. Now that the experimental protocol is public I can give my own report. I’m also the “old man” of the site, and if newbies see that I’m doing things differently than the “standard” CAP’s it tends to confuse. One of the side costs of our success in bringing more people to the site is that it’s more problematic for me to “think out loud” about my own treatment like I used to here. My musings and speculations tend to be followed with more attention than perhaps they deserve, and all sorts of questions or concerns pop up for people.
I’ve been following an emerging protocol Dr. Stratton has been developing with a friend of his who is a patient-expert on Cpni. The intention of this has been to find ways to alleviate some of the onerous effects of Cpn treatment so that it is easier on people, and to make the treatment process less lengthy. A number of people previously unable to tolerate CAP treatment, older folks especially with GFA syndrome (Generally Falling Aparti from Cpn related diseasesi) have been able to tolerate treatment and benefit from it in a number of months.
(Some of the explanation below has been repeated in the Handbook post on the experimental protocol)
Emerging research has been suggesting that Cryptic Cpn is not benign even if it is not replicating. Cryptic Cpn is essentially a stressed form of Cpn, and stress causes it to generate of Heat Shock Protein (HSP60), which is many times more inflammatory than LPSi endotoxini. LPS endotoxin is the one that causes the fever and chills and is released mostly when RB’s are killed and lyse, or when EB’s are killed. The inflammationi of plaques in cardiovascular disease has been associated specifically with Cpn HSP60 (this is a blog, so I’m not going to try to reference all this stuff here, you can look it up in Pubmed) and with the persistent (cryptic) form of Cpn. This is probably why those “big” studies of 6 months of azithromycin showed not lowering of risk of heart disease… it’s not caused by the replicating form of Cpn and the idiots never asked a microbiologist about what might kill cryptic Cpn!
Dr. Stratton has been thinking that a lot of the reactions people have to antibioticsi in treating Cpn is not all the LPS endotoxin release or porphyrins, but could in large part be from the highly inflammatory effect of forcing Cpn into Cryptic formi, causing it to generate a big wave of HSP60, and then a lower but chronic amount until it’s killed by the flagyl. He speculates that some of the reports of IV treatment causing little or no reaction is because it floods the system with so much antibiotic so quickly that the Cpn is killed before it starts to be stressed and generate HSP60 as part of it’s survival strategy. Paul Griffith, a non-medical friend researching this whole area, found that supplementing pyruvate might do the trick.
Basically, this approach uses 6grams of calcium pyruvate one hour before taking the antibiotics, and an additional 6 grams if needed later for reactions when the antibiotics exert their effect. In theory the first dose of pyruvate encourages the cryptic/persistent form of Cpn to convert back into RB (replicating) form by supplying it with a ready source for generating cellular energy. In RB form it is:
a) Susceptible to the regular antibiotics and,
b) Can be killed when it is not in “stress” so it is not stimulated into producing and releasing so much the highly inflammatory HSP60.
In essence, you are feeding it until it is comfy and sprawling in it’s chair at the dining table, and then whacking it upside the head!
In theory this approach should limit turning Cpn into cryptic form by the treatment and make it more directly susceptible to the protein synthase inhibitors (like doxyi and azith).
In theory, it should also winnow down the cryptic load one has acquired, along with it’s inflammatory affects, without needing to kill it directly with flagyl.
Also in theory, the second dose of pyruvate for reactions to the antibiotics should supply the fundamental cellular energy needed to help lower the generation of porphyrins.
Back to my blog…
So for the past three months I’ve been experimenting with this using different antibiotic agents, without and pulses. I finally did a tinii pulse last week to see whether I had indeed reduced the cryptic load—based on how much reaction I would have to the pulse. My personal speculation is that, if I’ve been building up lots of cryptic load by going so long without a pulse I’d have a strong reaction. If this new approach was itself winnowing down my cryptic load, I would have a relatively mild reaction.
Well, it’s only one pulse, but it was the easiest pulse I’ve ever had, and no noticeable post-pulse reaction. So it does seem that this new approach is useful. More importantly to me personally is that I’ve improved noticeably in my energy and cognition after these three months. I had been at a glacially slow improvement phase for a while, so this is really significant for me.
Month One- I first did a month of Biaxin (clairithromycin) twice a day in combination with about 4 grams of pyruvate, without any doxycycline. This combination was not easier on me. In fact I had stronger die-off reactions from this than I’d had in a long time. This was surprising, as I don’t have any significant reactions to the regular antibiotics, only to pulses. It suggested that I was indeed getting previously untouched Cpn to be vulnerable to the antibiotics. In fact, the reactions I was having were more like old pulses used to be: I was getting aches in joints, knees, trapezius muscle, sacroiliac joint, etc. which I only have gotten during pulses.
I had a couple weeks of flare up like this on the Biaxin/pyruvate combo. The second dose of pyruvate didn’t help a lot to counter these reactions, but I was only doing 4 grams for these post-antibiotic dose reactions and was told later by Dr. Stratton that this was not sufficient.
Month Two- The next month I did roxithromycin and Bactrim DS. I had some roxy left from a past experiment, and wanted to try the Bactrim to see if it helped with urinary symptoms. I had less reactions than on the Biaxin. After about two weeks I actually felt mentally clearer and more energy than I had in a long time! I was still only doing about 4 grams of the pyruvate, but love that roxy/bactrim!
Month Three- I ran out of the roxy after a month, and switch back to azithromycin briefly, 250mg daily preceeded by the pyruvate. I got an initial kick, again, but it settled down shortly. About this time I started to use 6grams pyruvate instead of 4. This eliminated most reactions and seemed to improve my energy and mood. Shortly, I got more roxy and switched back to it but also added doxy back as I ran out of Bactrim. I’d say during this month I was functioning well although at about the same level end of the month as at the beginning of the month.
He Hits, He Scores, He Pulses… I finally did my usual pulse of 500mg tini twice a day for five days. I had some reaction to the first dose of 1000mg. I usually double the first dose to 1000mg to bring my blood levels up quicker. These reactions were mostly alleviated by additional pyruvate. The rest of the pulse was uneventful: some short periods of irritability and aches that were easily countered by some pyruvate and a dose of ibuprophen. Post pulse now a week, no post pulse reactions to speak of.
I have to say that it does appear that this approach is clearing some stubborn areas of Cpn and also contributing to more energy, cognitive clarity and less inflammation.
Almost forgot: the unforgettable rifampin… Ah yes. Somewhere in the middle of all this I tried the pyruvate and rifampin. SLAMMED! I did 150mg rifampin twice a day and could only manage 4 days. Even lots of pyruvate didn’t counter my reactions to this one! So there is still some way to go here for me, as the “acid test” of rifampin is not approachable.
In Conclusion- Some of you who have noted how bloody long I’ve been on this protocol may be wondering if it’s really worth it. I’m the poster child (maybe along with Willow?) for starting out with an incredibly high bacterial loadi and pervasive infection. Every step-up of the protocol, every addition of a stronger agent, cost me in miserable reactions. But I told a friend the other day that I can look back at the last three birthdays and truly say that I have felt better than the last one each time. Not bad for reaching my 55th this weekend! Worth it? You bet. I am living more life than I was able to last year, and so much more than when I started. My patient story spoke of the narrowing tunnel of illness when I started the CAP. I’m out of the tunnel, in the sunshine and on level ground. That's good!
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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
Happy Birthday, friend.
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
Yes, Happy Birthday, Jim...
Yes, Happy Birthday, Jim... and thank you for being one of our pioneers (as well as a willing guinea pig
).
Jeanneroz ~CPN diagnosed and started protocol 4/2007, also have HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; Protocol: 200 mg/doxyi daily~ 250 mg AZITH M/W/F ~1st Tindi pulse 4/17/08- 1 250 mg. tab for 2 days. supplementsi
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Jeanneroz ~CPN diagnosed & started protocol 4/2007, also HV6, EBVi. CFIDSi/FM diagnosed: 6/07; 200 mg/doxyi/day~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.2nd Tini pulse 5/24/08: 1-250 mg 4 days,supplmntsJim, What was the dosage of
Jim, What was the dosage of Biaxin that you took?
Wishing you a very Happy Birthday,
Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, /full tinii Pulses with Cholestyramine at Bedtime for Phorphoria & liposacaride Endotoxini Die-Off experiences as needed post pulse cycle only.
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LouiseUSA. CFSi.WheldonCAP6/24/07. IntermittentCholestyramine 1-2 packets at HS with pulses &periodically as needed for porphoria&endotoxini. VitD-3,4000IU.Magnascent Iodine 8gtts/1-2x/day.
And many happy returns,
[Doxyi,
Azith, Biaxin and Flagyli] for rrms since October '05. Added Amoxicillini 1gm twice daily and LDN 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSS was 6.5,___________________________________________________________
[Doxyi, Azith, and Flagyli] for rrms since October '05. Added Amoxicillini 1gm twice daily and LDN 4.5mg qhs October '07.
Kitkat how long have you
Kitkat how long have you been taking Biaxin and at what dosage? How does it set for you on an empty stomach?
Thanks Jim for sharing that you were taking 500 mg BID, twice a day.
Louise
CFSi/ME. CPnPositive. BbPositive. WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Ful TiniPulsees. intermittent Cholestyramine 1 = 2 packets at Bedtime only for Phorphoria &l iposacaride Endotoxini Die-Off Experiences 5 to 10 days during pulse cycle as needed work well for me.
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LouiseUSA. CFSi.WheldonCAP6/24/07. IntermittentCholestyramine 1-2 packets at HS with pulses &periodically as needed for porphoria&endotoxini. VitD-3,4000IU.Magnascent Iodine 8gtts/1-2x/day.
Louise, I just started the
[Doxyi,
Azith, Biaxin and Flagyli] for rrms since October '05. Added Amoxicillini 1gm twice daily and LDN 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSS was 6.5,___________________________________________________________
[Doxyi, Azith, and Flagyli] for rrms since October '05. Added Amoxicillini 1gm twice daily and LDN 4.5mg qhs October '07.
Happy Birthday! Here's to
Happy Birthday! Here's to many more. Onwards and Upwards.
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.
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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
Thanks all! Kind
Thanks all! Kind sentiments. Biaxin dose 500mg twice a day.
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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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
Happy Birthday, Jim!! I
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.
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Happy birthday Jim...I was
Happy birthday Jim...I was wondering how do you schedule out the thyroid med, calcium pyruvate.., did you take the calcium pyruvate one hour before your evening dose of antibioticsi? if so, did you take a total of 3 doses of pyruvate per day, or just 2?
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<Jim, I was wondering which
Jim, I was wondering which antibiotic combo do you feel killed the most, along with the pyruvate?
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<Happy birthday. CAPi for
Happy birthday.
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day),
250 mg Zithi (3 x week)ceased 3/2008, 150 mg Roxi (2 x day) starting 3/2008. Seventh pulse metronidazolei completed 4/11/2008.___________________________________________________________
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week) ceased 3/2008, restarted 5/2008,
150 mg Roxi (2 x day)starting 3/2008, ended 5/2008. Tenth pulse metronidazolei completed 7/5/2008.Thanks for the update Jim -
Thanks for the update Jim - it was well worth the wait. Its front runners like you who make the journey easier for the rest of us.
Hope I can join you soon outside this tunnel!!
CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg + Rifamp 300mg . 13 Pulses done. Sauna every other day. D 7200IU
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Pathogens worthy of attack prove their worth by fighting back
Happy Birthday JimK & Many
Happy Birthday JimK & Many Happy Returns..
what does that mean anyway "many happy returns" My Mum would put it on our cards & I don't have any idea what it means. Happy is self explanatory as is many, but returns? does that mean many more birthdays to come?
inquiring minds want to know!
Thanks for doing the experiment! I read with great interest about the energy, less fog! For Jeannie & others who are slammed with the ME & the CPni I look with interest at getting at the beasts before they dump bad stuff causing us more grief!
the 9th was my husbands birthday - steady stubborn Taurus!
CFIDSi/ME 26yrs, FMSi,
IBSi, EBVi, CMV, Cpn, 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#9 750mg 5.5 day, 4-25-8___________________________________________________________
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#11 1000 mg 5 days 6-14-08Ruth, To me it means best
[Doxyi,
Azith, Biaxin and Flagyli] for rrms since October '05. Added Amoxicillini 1gm twice daily and LDN 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSS was 6.5,___________________________________________________________
[Doxyi, Azith, and Flagyli] for rrms since October '05. Added Amoxicillini 1gm twice daily and LDN 4.5mg qhs October '07.
Tax Returns,
Tax Returns, maybe? No, something to do with a ball-game, I think...............Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.
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Thanks again Jim, have a
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Nino: French Riviera, Cpni pneumonia june05 (misdiagnosed). Self diagnosed-treated. Now on Roxi 150mg bid, NACi 1200 to 2400, vitaminsi. Rifampin 300mg, calcium pyruvate 3 g.
Happy Birthday, Jim! And
Happy Birthday, Jim!
And thanks again for all you do (and have done) for us...
On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIR Sauna since 08/07
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On Combined Antibiotic Protocol for Cpni in Rosaceai 01/06 - 07/07, On Vit D3 + NACi since 07/07 and daily FIR Sauna since 08/07
- THANKS for your
- THANKS for your update - that must have taken a while to write, but it will be so appreciated by many. Hope is so good.
The difference between what
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
___________________________________________________________
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
HSP60. If IV antibioticsi
HSP60. If IV antibioticsi flood the system and kill the cpni before it has time to get stressed preventing the HSP60 toxin, shouldn't we be purusing this method of treatment? Especially if it speeds up the destruction of the beasties and reduces tretment time? Thanks Jim for posting your interesting editorial on chlamydia, HSP60 and pyruvate.
Tina-MSi 37 years;EDSS 4.5 1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.
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Tina-MSi 37 years;EDSS 4.5 1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.
Jim, Happy, Happy
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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., LDN 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.
Happy Birthday Jim! So happy
Happy Birthday Jim!
So happy you feel better!
Thanks for this website and all the work you do here,it helps me and my family a lot.
Best Wishes,
Maria
Jim-Very nice you shared
Like Veressv, I think I may
Like Veressv, I think I may just add the calcium Pyruvate to my current regime.
Could you just clarify Jim, if you used it every day - I assume you did, not just pulse times, etc.
If so, its expensive huh? As IHerb only sells it in MG not GRAMMES! And i have to order it from the UK.
Good to hear that you are still making progress out in the sunshine and on the road.
AH HA - edit - I see in previous thread on this, some people are taking it every day, especially during pulses and thereafter ... i hope that answers my question.
M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
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M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
Jim, I had posted a couple
Jim, I had posted a couple of questions, and wanted to make sure that they did not get lost in massive responses. what is your current medicine regime? which abxi are you on right now? what is your schedule in the morning time-re:thyroid meds? do you take a total of 2 or 3 dose of pyruate per day?
Also, I was wondering if the experiment using pyruvate involved MSi or nonMs folks, or both?
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<First happy birthday and
First happy birthday and second glad to see that things are going well.
Biaxin was the only drug that has ever made me 100 % symptom free. It took away all my facial pain, fibro and it prevented me from developing lupus. I thought I was cured. My dosage was also 500 x 2 a day. Sadly though, I stopped it too soon and all my symptoms came back. Now, heres the thing.. this new protocol presents a dilema for me. I started the cpni protocol with the doxyi/azith/metroi thinking that it was a better treatment than the biaxin I took in the past, and now its being suggested that biaxin is actually the better treatment of choice now.
So as we can see this is a problem for me because my cpn is definatly biaxin resistant and has been since the late 90's.
The only other option left is the roxyi which is not available here so Ill have to get it myself... a little sooner than i expected it seems.
Anyway this is my question regarding the old vs new protocol?
Its suggested we switch to the biaxin protocol but its suggested to take the biaxin at the highest dose which is 500 x 2 per day, but... if we follow the zithro protocol we are suggested to take only the lowest dose at 250 mwf.
Why is it not instead suggested that we simply up the zithro dose to the maximum instead of switching to biaxin? Did dr S find that many strains of cpn are now zithro resistant or something?
Also, what is the maximum dose of roxy, and what is the dose that is being suggested for this protocol?
Thanks, and to anyone else, if you havnt taken Biaxin before I'd highly reccomend it too.
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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBS neutropenia, pus found in facial bone, Doxy 100x2, zithro 250x1 alternate days. Metroi pulses each month.
hi Clam. There is nothing
Happy Birthday, Jim! And,
Happy Birthday, Jim! And, many, many more.
Thank you for everything. And for your blog. Such an appropriate title.
--Minai
I take the abxii twice a
I take the abxi twice a day, so it's 6 grams one hour before, twice a day...
But, an additional 6 grams if I'm getting reactions when the abxi hit.
Roxy 150mg twice a day.
I've found best prices:
Here
Here
I haven't used it but a source of powdered form is:
100% pure Calcium Pyruvate powder, 154 grams per jar.
Produced in Germany.
No fillers, flow agents or preservatives.
$29.95 for 1 jar.
$28.45 for 2-5 jars
$26.95 for 6+ jars.
City Pharmacy
701A S. Thompson
Springdale, AR 72764
Phone: 479-751-2072
Fax: 479-751-2341
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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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