27 Apr 2018
Author
garcia
Title

Emerging protocol discussion

Body

Thanks to Jim for posting his & Dr Stratton's thoughts on the new emerging/experimental protocol.http://www.cpnhelp.org/emerging_stratton_protoco Lots of interesting questions/issues came to my mind. Just one of them: "this new approach is based on inducing existing persistent/cryptic Cpn to convert back to RB form ... supplementing pyruvate might do the trick"What other agents could fulfill this role? 6 grams of Calcium pyruvate is quite a lot to be taking in one go (they are not exactly small tablets).

Comments

garcia-thanks for this. I am so interested in this new approach. I would like to get to know more of course.

doxy200, azith250, NAC 2400, Metro 1250(once a month), supplements, vitamins.

 Well one agent we know that does this in the lab is tryptophan. You'd only want to do this at night, though, as it's a sleep aid! There are likely other Kreb's cycle inducers, but I don't know the chemistry enough to know whether d-Ribose would do. Certainly, there is an advantage to supplementing with something that contributes to the cellular production of glucose without contributing to the blood levels of glucose. You are bypassing a whole bunch of steps, other uses of glucose in the body, and are not feeding yeasts as you probably are with glucose.

Thanks for starting this thread. It's an important discussion. 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 300mg Roxithromycin, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

Thanks Jim - of course tryptophan. Been avoiding it for so long I forgot it existed!!

> there is an advantage to supplementing with something that contributes to the cellular production of glucose without contributing to the blood levels of glucose

That makes perfect sense. D-ribose sounds like it might be a candidate for pyruvate replacement. BTW did you find it a hassle to down so many large pills?

CFS. Started CAP 03-07. Currently: Roxi 600mg + Doxy 200mg + Rifamp 300mg . 13 Pulses done. Sauna every other day. D 7200IU

Hunter: Don't think - experiment

On the subject of large pills the new protocol says to take 6 pyruvate pills 1 hour before abx and 6 pills afterwards for symptom-relief. Thats 12 pills per dosage, or 24 pills per day!! That works out to be 168 pills per week, or 672 pills a month!!

Over the course of a month you will have swallowed nearly 0.7 kg of calcium pyruvate. 

The cost of pills (cheapest ones from iherb) is around $20 per week. My understanding is that pyruvatre powder is available, but is about 3.5 times as expensive.

So that brings up a few issues:

1) cost (this isn't a huge deal certainly with the pills)

2) physically swallowing 24 large pills a day (on top of what we already take)

3) Quantity of Calcium we are ingesting may be too high (some of us have calcium dysregulation and need to watch intake).

Please tell me I've miscalculated ... 

CFS. Started CAP 03-07. Currently: Roxi 600mg + Doxy 200mg + Rifamp 300mg . 13 Pulses done. Sauna every other day. D 7200IU

Hunter: Don't think - experiment

D-ribose is an all-rounder that can be converted into glucose, helps to form pyruvate and forms nucleotides including ATP.  It was recommended to me by my LLMD, he did various tests looking at mitochondrial function  and found  my ATP production was extraordinarily low at the time that I was very ill and barely functioning physically and mentally. I've taken it since the early days of CAP, it boosts my energy so much that  at times that I've run out or forgotten to take it regularly there is a noticable slump.

I may get around to trying pyruvate out sometime but for the moment D-ribose is working so well that I don't feel inclined to change.  For me  it's effective against porphyria, helping me through a 22 day pulse of tini with minimal problems.....but it's essential to take plenty   

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

D-Ribose therapeutic dosage, initially for the first several weeks 5 grams three times a day.  Then 5 grams twice a day, I would suggest early morning and early afternoon so as not to interfer with sleep as some folks experience.

Louise

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full 5 day TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

You may or maynot need the after dose.  I think Jim said it did not help. Each person will be different though. Then if you take your second dose of antibiotics late enough in the day, then you may not need the afterwards dose either. 

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpn, myco, EBV, CMV. NAC 4000mg, doxy 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyl, tini<

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

d-Ribose.  So very glad to read these comments.  

I have wondered about d-Ribose concerning both porphryia and blood sugar levels. I just found a new brand that is better priced than what I had tried some time ago. 

 

  

 

Sharon, you are right - the symptom-relieving dose of pyruvate is optional, but I think Jim said it did really help him. Also you are right about the 2nd dosage - I take mine just before bed so not much point supplementing with pyruvate then. I guess that means 12 tabs a day, which is still a lot, but certainly doable.

Elinor, you are lucky that D-ribose helps you so much. My doc prescribes it regularly as part of her fatigue regime. Didn't do much for me unfortunately.

I'd be interested to hear people's experiences of using D-ribose in the same way Dr Stratton is advocating using pyruvate. Can it be used to draw out Cryptic forms back into Replicating forms? I guess the only way to find out would be repeated experimentation.

CFS. Started CAP 03-07. Currently: Roxi 600mg + Doxy 200mg + Rifamp 300mg . 13 Pulses done. Sauna every other day. D 7200IU

Hunter: Don't think - experiment

Is tryptophan the same as L-tryptophan, sold in health food shops across the land?  Its usually sold as a supplement to boost serotonin etc.  Could anyone just quickly verify.

It is exciting to see the protocol developing - anything that reduces the die off effects and (perhaps even) shorten the course would be so welcome at this stage.  I've ordered the calcium pyruvate, but undecided about D-Ribose.

I should admit though to feeling like I'm trying to hold a bag of mice all jumping out and about at once ..... trying to make sense of it all.  I think I'll have to do it a bit at a time ....

Blackfoot

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.

Garcia, you are right..I went back and looked. he said the 4 grams later in the day didnot help, but the 6 grams did help.   

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpn, myco, EBV, CMV. NAC 4000mg, doxy 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyl, tini<

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

 

Sounds risky:  “tryptophan, porphyria” – nearly 28,000 GOOGLE results

PubMed searchwith “tryptophan, porphyria” – 59 abstracts http://www.ncbi.nlm.nih.gov/sites/entrez

================================== 

http://www.sciencemag.org/cgi/content/abstract/222/4627/1031


DOI: 10.1126/science.6648517

Science,Vol 222, Issue 4627, 1031-1033

Copyright© 1983 by American Association for the Advancement of Science

L-tryptophan:a common denominator of biochemical and neurological events of acute hepaticporphyria? by DA Litmanand MA Correia

Excerpt:  Thesefindings suggest that increased tryptophan and 5-hydroxytryptamine in thenervous system may be responsible for the neurologic dysfunctions observed inhumans with acute attacks of hepatic porphyria.

=================================== 

Biochem Pharmacol. 2008 Feb 1;75(3):704-12.Epub 2007 Oct 2.

Hepaticalteration of tryptophan metabolism in an acute porphyria model Its relationwith gluconeogenic blockage. by Lelli SM,Mazzetti MB,San Martín deViale LC.

Laboratoriode Disturbios Metabólicos por Xenobióticos, Salud Humana y Medio Ambiente(DIMXSA), Departamento de Química Biológica, Facultad de Ciencias Exactas yNaturales, Universidad de Buenos Aires, Ciudad Autónoma de Buenos Aires,Argentina.

Excerpt:

This studyfocuses on the alterations suffered by the serotoninergic and kinurenergicroutes of tryptophan (TRP) metabolism in liver, and their relation withgluconeogenic phosphoenolpyruvate-carboxykinase (PEPCK) blockage inexperimental acute porphyria.

 =====================================================================J Assoc Physicians India. 2002Mar;50:443-5.

 Respiratoryfailure in acute intermittent porphyria.

Tyagi A,Chawla R,Sethi AK,BhattacharyaA.

Departmentof Anaesthesiology, UCMS and GTB Hospital, Shahdara, Delhi.

 We reporttwo patients of acute intermittent porphyria (AIP) who presented with acuterespiratory failure. Only one such previous report could be found.Occasionally, neuropathy may be the presenting feature in AIP which mayprogress to respiratory embarrassment.

 The causeof this neuropathy has been hypothesized to be direct neurotoxicity ofdelta-ALA by interaction with GABA receptor, altered tryptophan metabolism andmay be heme depletion in nerve cells.

==================================== 

 

Sounds risky:  “tryptophan, porphyria” – nearly 28,000 GOOGLE results

PubMed search with “tryptophan, porphyria” – 59 abstracts http://www.ncbi.nlm.nih.gov/sites/entrez

================================== 

http://www.sciencemag.org/cgi/content/abstract/222/4627/1031


DOI: 10.1126/science.6648517

Science, Vol 222, Issue 4627, 1031-1033

Copyright © 1983 by American Association for the Advancement of Science

L-tryptophan: a common denominator of biochemical and neurological events of acute hepatic porphyria? by DA Litman and MA Correia

Excerpt:  These findings suggest that increased tryptophan and 5-hydroxytryptamine in the nervous system may be responsible for the neurologic dysfunctions observed in humans with acute attacks of hepatic porphyria.

=================================== 

Biochem Pharmacol. 2008 Feb 1;75(3):704-12. Epub 2007 Oct 2.

Hepatic alteration of tryptophan metabolism in an acute porphyria model Its relation with gluconeogenic blockage. by Lelli SM, Mazzetti MB, San Martín de Viale LC.

Laboratorio de Disturbios Metabólicos por Xenobióticos, Salud Humana y Medio Ambiente (DIMXSA), Departamento de Química Biológica, Facultad de Ciencias Exactas y Naturales, Universidad de Buenos Aires, Ciudad Autónoma de Buenos Aires, Argentina.

Excerpt:

This study focuses on the alterations suffered by the serotoninergic and kinurenergic routes of tryptophan (TRP) metabolism in liver, and their relation with gluconeogenic phosphoenolpyruvate-carboxykinase (PEPCK) blockage in experimental acute porphyria.

 =====================================================================J Assoc Physicians India. 2002 Mar;50:443-5.

 Respiratory failure in acute intermittent porphyria.

Tyagi A, Chawla R, Sethi AK, Bhattacharya A.

Department of Anaesthesiology, UCMS and GTB Hospital, Shahdara, Delhi.

 We report two patients of acute intermittent porphyria (AIP) who presented with acute respiratory failure. Only one such previous report could be found. Occasionally, neuropathy may be the presenting feature in AIP which may progress to respiratory embarrassment.

 The cause of this neuropathy has been hypothesized to be direct neurotoxicity of delta-ALA by interaction with GABA receptor, altered tryptophan metabolism and may be heme depletion in nerve cells.

==================================== 

 again, this type size has a mind of its own.  Sorry.  It's very hard to copy and paste.  I even made all the type the same and took it down to 8 point, but it copied all over the place.

 

Sounds risky:  “tryptophan, porphyria” – nearly 28,000 GOOGLE results

PubMed searchwith “tryptophan, porphyria” – 59 abstracts http://www.ncbi.nlm.nih.gov/sites/entrez

================================== 

http://www.sciencemag.org/cgi/content/abstract/222/4627/1031


DOI: 10.1126/science.6648517

Science,Vol 222, Issue 4627, 1031-1033

Copyright© 1983 by American Association for the Advancement of Science

L-tryptophan:a common denominator of biochemical and neurological events of acute hepaticporphyria? by DA Litmanand MA Correia

Excerpt:  Thesefindings suggest that increased tryptophan and 5-hydroxytryptamine in thenervous system may be responsible for the neurologic dysfunctions observed inhumans with acute attacks of hepatic porphyria.

=================================== 

Biochem Pharmacol. 2008 Feb 1;75(3):704-12.Epub 2007 Oct 2.

Hepaticalteration of tryptophan metabolism in an acute porphyria model Its relationwith gluconeogenic blockage. by Lelli SM,Mazzetti MB,San Martín deViale LC.

Laboratoriode Disturbios Metabólicos por Xenobióticos, Salud Humana y Medio Ambiente(DIMXSA), Departamento de Química Biológica, Facultad de Ciencias Exactas yNaturales, Universidad de Buenos Aires, Ciudad Autónoma de Buenos Aires,Argentina.

Excerpt:

This studyfocuses on the alterations suffered by the serotoninergic and kinurenergicroutes of tryptophan (TRP) metabolism in liver, and their relation withgluconeogenic phosphoenolpyruvate-carboxykinase (PEPCK) blockage inexperimental acute porphyria.

 =====================================================================J Assoc Physicians India. 2002Mar;50:443-5.

 Respiratoryfailure in acute intermittent porphyria.

Tyagi A,Chawla R,Sethi AK,BhattacharyaA.

Departmentof Anaesthesiology, UCMS and GTB Hospital, Shahdara, Delhi.

 We reporttwo patients of acute intermittent porphyria (AIP) who presented with acuterespiratory failure. Only one such previous report could be found.Occasionally, neuropathy may be the presenting feature in AIP which mayprogress to respiratory embarrassment.

 The causeof this neuropathy has been hypothesized to be direct neurotoxicity ofdelta-ALA by interaction with GABA receptor, altered tryptophan metabolism andmay be heme depletion in nerve cells.

==================================== 

 again, this type size has a mind of its own.  Sorry.  It's very hard to copy and paste.  I even made all the type the same and took it down to 8 point, but it copied all over the place.

 

Sounds risky:  “tryptophan, porphyria” – nearly 28,000 GOOGLE results

PubMed searchwith “tryptophan, porphyria” – 59 abstracts http://www.ncbi.nlm.nih.gov/sites/entrez

================================== 

http://www.sciencemag.org/cgi/content/abstract/222/4627/1031


DOI: 10.1126/science.6648517

Science,Vol 222, Issue 4627, 1031-1033

Copyright© 1983 by American Association for the Advancement of Science

L-tryptophan:a common denominator of biochemical and neurological events of acute hepaticporphyria? by DA Litmanand MA Correia

Excerpt:  Thesefindings suggest that increased tryptophan and 5-hydroxytryptamine in thenervous system may be responsible for the neurologic dysfunctions observed inhumans with acute attacks of hepatic porphyria.

=================================== 

Biochem Pharmacol. 2008 Feb 1;75(3):704-12.Epub 2007 Oct 2.

Hepaticalteration of tryptophan metabolism in an acute porphyria model Its relationwith gluconeogenic blockage. by Lelli SM,Mazzetti MB,San Martín deViale LC.

Laboratoriode Disturbios Metabólicos por Xenobióticos, Salud Humana y Medio Ambiente(DIMXSA), Departamento de Química Biológica, Facultad de Ciencias Exactas yNaturales, Universidad de Buenos Aires, Ciudad Autónoma de Buenos Aires,Argentina.

Excerpt:

This studyfocuses on the alterations suffered by the serotoninergic and kinurenergicroutes of tryptophan (TRP) metabolism in liver, and their relation withgluconeogenic phosphoenolpyruvate-carboxykinase (PEPCK) blockage inexperimental acute porphyria.

 =====================================================================J Assoc Physicians India. 2002Mar;50:443-5.

 Respiratoryfailure in acute intermittent porphyria.

Tyagi A,Chawla R,Sethi AK,BhattacharyaA.

Departmentof Anaesthesiology, UCMS and GTB Hospital, Shahdara, Delhi.

 We reporttwo patients of acute intermittent porphyria (AIP) who presented with acuterespiratory failure. Only one such previous report could be found.Occasionally, neuropathy may be the presenting feature in AIP which mayprogress to respiratory embarrassment.

 The causeof this neuropathy has been hypothesized to be direct neurotoxicity ofdelta-ALA by interaction with GABA receptor, altered tryptophan metabolism andmay be heme depletion in nerve cells.

==================================== 

 again, this type size has a mind of its own.  Sorry.  It's very hard to copy and paste.  I even made all the type the same and took it down to 8 point, but it copied all over the place.

 Danger? “tryptophan, porphyria” – Google search: nearly 28,000 results

PubMed search with “tryptophan, porphyria” – 59 abstracts

http://www.ncbi.nlm.nih.gov/sites/entrez

I excerpted three key articles and my summary just won't post.  It will paste - in all sizes (sorry) but my whole group will not complete the post process.

so, with the info. above, anyone can search this out for themselves. 

As I interpret it, typtophan should be avoided by those with elevated porphyrins as well as those with genetic porphyria.  Of course, if I interpret this incorrectly, I hope someone will come along and tell me.  I sure wish my 

 

http://www.sciencemag.org/cgi/content/abstract/222/4627/1031

 

Science 2 December 1983:
Vol. 222. no. 4627,

pp. 1031-1033

DOI: 10.1126/science.6648517

 

ARTICLES

Science, Vol 222, Issue 4627, 1031-1033

Copyright © 1983 by American Association for the Advancement of Science

 

 

L-tryptophan: a common denominator of biochemical and neurological events of acute hepatic porphyria?

DA Litman and MA Correia

 

Excerpt:

 

These findings suggest that increased tryptophan and 5-hydroxytryptamine in the nervous system may be responsible for the neurologic dysfunctions observed in humans with acute attacks of hepatic porphyria.

 

 

 

Biochem Pharmacol. 2008 Feb 1;75(3):704-12. Epub 2007 Oct 2.

 

Hepatic alteration of tryptophan metabolism in an acute porphyria model Its relation with gluconeogenic blockage.

Lelli SM, Mazzetti MB, San Martín de Viale LC.

 

Laboratorio de Disturbios Metabólicos por Xenobióticos, Salud Humana y Medio Ambiente (DIMXSA), Departamento de Química Biológica, Facultad de Ciencias Exactas y Naturales, Universidad de Buenos Aires, Ciudad Autónoma de Buenos Aires, Argentina.

Excerpt:

This study focuses on the alterations suffered by the serotoninergic and kinurenergic routes of tryptophan (TRP) metabolism in liver, and their relation with gluconeogenic phosphoenolpyruvate-carboxykinase (PEPCK) blockage in experimental acute porphyria.

 

 

J Assoc Physicians India. 2002 Mar;50:443-5.

Links

 

Respiratory failure in acute intermittent porphyria.

Tyagi A, Chawla R, Sethi AK, Bhattacharya A.

 

Department of Anaesthesiology, UCMS and GTB Hospital, Shahdara, Delhi.

 

We report two patients of acute intermittent porphyria (AIP) who presented with acute respiratory failure. Only one such previous report could be found. Occasionally, neuropathy may be the presenting feature in AIP which may progress to respiratory embarrassment.

 

The cause of this neuropathy has been hypothesized to be direct neurotoxicity of delta-ALA by interaction with GABA receptor, altered tryptophan metabolism and may be heme depletion in nerve cells.

 

-========= 

 

Risky? Tryptophan w/ porphyria

http://www.sciencemag.org/cgi/content/abstract/222/4627/1031

 

Science 2 December 1983:
Vol. 222. no. 4627,

pp. 1031-1033

DOI: 10.1126/science.6648517

 

 

ARTICLES

Science, Vol 222, Issue 4627, 1031-1033

Copyright © 1983 by American Association for the Advancement of Science

L-tryptophan: a common denominator of biochemical and neurological events of acute hepatic porphyria?

DA Litman and MA Correia

 Excerpt:

 These findings suggest that increased tryptophan and 5-hydroxytryptamine in the nervous system may be responsible for the neurologic dysfunctions observed in humans with acute attacks of hepatic porphyria.

 =========================================

Biochem Pharmacol. 2008 Feb 1;75(3):704-12. Epub 2007 Oct 2.

Hepatic alteration of tryptophan metabolism in an acute porphyria model Its relation with gluconeogenic blockage.

Lelli SMMazzetti MBSan Martín de Viale LC.

 Laboratorio de Disturbios Metabólicos por Xenobióticos, Salud Humana y Medio Ambiente (DIMXSA), Departamento de Química Biológica, Facultad de Ciencias Exactas y Naturales, Universidad de Buenos Aires, Ciudad Autónoma de Buenos Aires, Argentina.

Excerpt:

This study focuses on the alterations suffered by the serotoninergic and kinurenergic routes of tryptophan (TRP) metabolism in liver, and their relation with gluconeogenic phosphoenolpyruvate-carboxykinase (PEPCK) blockage in experimental acute porphyria.

 ==================================

J Assoc Physicians India. 2002 Mar;50:443-5.

Respiratory failure in acute intermittent porphyria.

Tyagi AChawla RSethi AKBhattacharya A.

 Department of Anaesthesiology, UCMS and GTB Hospital, Shahdara, Delhi.

 We report two patients of acute intermittent porphyria (AIP) who presented with acute respiratory failure. Only one such previous report could be found. Occasionally, neuropathy may be the presenting feature in AIP which may progress to respiratory embarrassment.

 The cause of this neuropathy has been hypothesized to be direct neurotoxicity of delta-ALA by interaction with GABA receptor, altered tryptophan metabolism and may be heme depletion in nerve cells.

Keebler- I agree on the tryptophan, as there is lot's of stuff on serotonin and porphyria, and by implication tryptophan, in Dr. Stratton's original discussion of it in the patent materials. It's somewhere in the handbook, either as an appendix or under the porphyria section. It's not a preferred method until Dr. S tells me so!

Pdf's at this link: http://www.cpnhelp.org/HostCellInteractionpdf

 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 300mg Roxithromycin, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

Keebler, the reason some of your comments may not be posting is because the number of links there are in a message.   This is one of the filters the site uses to make sure we don't get spam infested.   There is another way to make links on this site and that is by using the little chain sympol that appears when you enable rich text.   When you highlight a word in your message  the chain symbol will be enabled and you will call up a window when you click on it in which you can past a URL.

This way of including links will not activate the spam filter.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

In Doctor Stratton's emerging protocol it is stated that for old hands:

"For those on the current Doxycyclinei, Azithromycini, Metronidazole, and NAC protocol, my thoughts are that they should first switch from Azithromycin 250 MWF to Clarithromycin 500 mg twice a day (or Roxithromycini) and then add pyruvate"

but earlier on he says for newbies ...

"The next step would be two weeks of a macrolide (clarithromycin preferred because of higher levels obtained, roxithromycin, or azithromycin)" .

This is confusing isn't it? I. E. for new people people clarithyromycin OR roxy OR azith is fine.  But for those who have already been on the protocol, azith should be switched to clarith or roxy.

Since I already take doxy, roxy and flagyl - there is actually no change for me I suppose?

I find the way the choice of antibiotics are described very confusing : have I missed something?

Blackfoot.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.

Blackfoot, I may be wrong here but my thinking is that Azythro is less available in the cirulation once it is absorbed by the cells because of it's longer half life in the body or something like that.  Roxi and Clarithromycin need twice a day ( or at least daily) dosing so the are more available in the general circulation when the Pyruvate reactivates the bacteria by feeding them well.  Anyway that is my take on it.

Louise

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

so ideally i should switch to clarithyromycin (another name for which is Biaxin ?), Doxy and Flagyl as my team of antibiotics here in the UK....?

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.

Biaxin is very expensive by the way (or Clarithyromycin); has anyone noticed?  So, unless there is a difference, there doesn't seem much point in changing to this from Roxy. phew ....  Jim, i seem to remember got more of a reaction from Biaxin, don't know if that means its "stronger";guess so ...

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.

Michele, I have Rich Text enabled however the link symbol is muted and not available for use.  Any thoughts?

LouiseCFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Louise,  My experience has been that the link icon is muted until the link word in my text is highlighted.  After the highlighting, the icon is no longer muted but usable. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce, so then the link disapears and the here remains?  I have seen Michele insert a link  that is hidden but accessable is that the way it is done.  Would be handy for long URL addresses.

Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Louise,  All I know is that the icon is muted until you actually highlight whichever word or words in the text that will be clicked on for the link.  Once the word(s) is highlighted, the icon is no longer muted.  Then I click the icon and put the link address in the box that pops up.  You can preview your post and click on the link word(s) in the text to make sure it will work.  The next time, I have to go through the same procedure again.  In the past, my link icon was never muted when I was posting in rich text, so this is different for me too.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

I have talked to Pharmacists and Docs on Roxy and it is not available in Canada. In wonder why that is? 

SPMS< Supplements & NAC, Doxy 100 mg, Azith 250 mg 3X/wk

Lived with MS since 1991. Completed 16 months of full CAP plus supplements. Currently in full remission. Not on any antiobiotics anymore but taking all supplements incl NAC.

Todybear, is Clarithromycin (Biaxin) available in Canada?

Louise

CFS/ME. CPn Positive. Bb Positive.Wheldon CAP began 6/24/07. Now NAC, Doxy, Roxi, Full Tini Pulses. Cholestyramine at Bedtime for Phorphoria & liposacaride Endotoxin Die-Off Experiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Blackfoot- you are right, that is an inconsistency in how Dr. Stratton states it originally. With what I understand about all this, I would go with roxy and clarithromycin preferred over azith because of their shorter half-life for this strategy. I also found more reactions from clarithromycin, hence why I am on the roxy currently. I don't know if that if from stronger kill effect or from better immunomodulation in the roxy. We are all awaiting the laboratory testing of this strategy and different agents used. Until then it's all based on theory so we have to know that we are experimenting here.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 300mg Roxithromycin, Tini 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3