27 Apr 2018
Author
Paul
Title

Experimental Therapy

Body

Hi,

A few people and myself have been using a somewhat different therapy approach for the past several months and the results have been encouraging. I will put off for the moment a discussion on the rationale for this approach as I would prefer to see some lab results first. However so far this approach appears to work a little faster and with less side effects than the current CAP so I wanted to go ahead and post something.

Comments

Good Morning Paul.   Interesting to see your topic post and I have been aware of various users commenting upon the addition of caffeine to their adjuncts to achieve changes in their response to CAP.  I am not caffeine free at this point in my life, however I am not using it therapeutically at this point and am currently doing well on intermittent cycle CAP, I was on Doxi, Roxi and Tinidazole for 20 months before beginning intermittent cycles.  I am looking forward to the discussion of this topic.   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

I, AS lOUISE INDICATED ALSO, AM LOOKING FORWARD TO DISCUSSION ON THIS TOPIC. I HAVE JUST GOTTTEN WORSE FOLLOWING WHELDON PROTOCOL BUT I STILL DO IT!

ONCE AGAIN, I'M CLOSE TO GIVING UP.

LOULOU

diagnosed MS Jan.2000 ,  chronic neurological lyme disease Nov.2002.doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,

  Hi Paul,  Thank you for bringing this topic up. Lately I have been using more caffeine and have noticed  much more immune reactions than before. The reactions started with my last pulse, which consisted of three days of tini, they are like a restless leg syndrome feeling in arms, fingers and legs. I'm guessing this to be peripheral neuropothy? Am looking forward to hear the views of others as well.  Best,Patti

FMS,CFS, 15 years,CPn antibodies,mycoplasm pn.,leison on posterior pituitary. Started CAP end of Dec. 08 mino.100 daily, azith. 250 MWF all supplements,compounded T3 therapy.

Paul, it might be a help if you gave some reason for using caffeine because many people don't like to take anything without knowing why it has been suggested.

Incidentally, a few MS people on this site are using caffeine after either seeing Sriram or talking with Stratton.  I am not because I finished treatment two years ago after four years, most of which were intermittent treatment.  I would, however, be very interested about knowing steps being made to make the treatment shorter or easier because I know that probably most people have a harder time with the treatment than I did: my worst days were definitely before I started treatment but for some reason I reacted quite quickly.  Many people who contact me are wary of such a long treatment which is going to make them feel so bad and it would be nice to be able to tell them of steps being made to hopefully stop this but also to be able to give them reasons..............Sarah

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Red

Hi Paul,

Interesting.   Perhaps this explains some of my responses to differing forms of treatment...

I've consistently had 3 two cup mugs of coffee every morning since starting CAP (and for years prior to CAP actually).    From what I understand there is roughly 100mg of caffeine per cup of coffee, so I should be getting @ 600mg of caffeine within a 20 minute period of time each morning.

I did this while on the Wheldon protocol of doxy, azith and pulsed flagyl and improved well over a 12 month period.   I then added the 4000IU of Vit D3 and over a period of an additional 6 months had hugely increased symptoms of secondary porphyria to the point I could not really continue to function.   It was actually scary then, and probably even more scary now as I look back.

At that point I realized I could not handle both the CAP and Vit D3 so I tried going back to just CAP.  After a short period of time all problemmatic symptoms disappeared, but I did not feel like I was getting any improvement.   So I switched to high dose Vit D3 (with NAC at the time) only and worked my way up to 10,000iu a day over another period of 6 months or so, all the while continuing to improve (but all the while continuing the 600mg of caffeine a day too).  

At each increased dose of Vit D3, btw, I had greatly increased symptoms for @ 2-3 months.   It was like doing a 2-3 month long flagyl pulse, but then it would subside.   I went from 4,000IU a day to 10,000IU a day in 2,000IU increments, roughtly every 2-3 months...

I've since dropped NAC and have had increased improvements since dropping it as well.   Jim said he mentioned this to Dr S and apparently Dr S thought I might have cleared enough from my immune system during the 18 months of CAP that this is why the Vit D3 seemed to work alone.     This does not seem logical to me since I gave up CAP only because in combination with Vit D3, this was just way, way too much to handle.  And I also don't think this would explain the increased symptoms I had at each increased dose...

Apparently Dr S believes that cathelicidins alone are ineffective against Cpn, and I know that this has been shown through studies.   Still, I believe the true action of Vit D3 belongs to its interference with Cpn's own interference with apoptosis:

Vitamin D3 in Chlamydia pneumoniae Infection - Important effects on NF-kappaB and inhibitor of apoptosis proteins

Since caffeine has been shown to have effects in this area too, I cannot help but wonder if this isn't the mechanism that has helped work for me:

Induction of Apoptosis by Caffeine Is Mediated by the p53, Bax, and Caspase 3 Pathways

We also know that Vit D3 helps promote other forms of defensins and we have seen no studies on defensins and Cpn:

Vitamin D3, Defensins, and Infection

 

I'm sure they're still in the early days of work on caffeine in this treatment, but I can't help but wonder if perhaps the relatively large amounts of caffeine that I consume have also been working in synergy first with CAP and then with high-dose Vit D3 treatment for me, preventing Cpn from finding safe haven to replicate inside infected cells..

BTW, although I list the reason I started treatment as Rosacea, mostly because the constant facial burning I had with Rosacea was my worst symptom (it was like the worst sunburn you've ever had, and it was constant), I also had full body swellling, IBS, cluster headaches that occurred @ 5 days a week on average over a period of 30 years, asthma-like symptoms (never formally diagnosed) and continually increasing allergies, among many other symptoms (aches and pains, sinus troubles, odd rashes, etc) that have since all pretty much gone away (some are still going away)...

Anyway, very interesting.      Definitely keep us posted...

 

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Hi Sarah,

I PM'd you with some more information. For others here, the simple rationale is that caffeine appears to overcome Cpn's resistance mechanism in much the same way that metronidazole does but with fewer side effects. And again while this seems to be faster way to treat Cpn, it still takes time. The range seems to be 6-24 months and is presumably dependent upon how significant of a systemic infection one has.

- Paul

Hi Paul, so this is a new way of using caffeine?

I know some here that takes caffeine to force cryptic cpn back to

Rb form and then kill cpn in Rb form with abx. And that makes treatment easier in the long run because you dont have such a high cryptic body load.

Are you saying that caffine makes cpn more easy killed by abx?

Thanks a lot for your posting!

I really want to understand this because I want to kill all cpn I can.

Best Wishes, Maria

Cpn since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid.All classic cpn,porphyria and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NAC, high vitamin D3. CAP for over 3 years. Back to work and life

Hi Paul,

I've been following the posts and have a question for you. How do you feel about combining caffiene and NAC alone? It seems not an easy question to answer. I'm trying to avoid the side effects from the cap.

 

Gratefully,

Beth

BTW the specific combination that I use personally is below. I take all pills at one time.

150 mg of rifabutin daily (zithro/doxy would be a good substitute)
100-1,000 mg of caffeine daily *
600 mg NAC
Multivitamin **

* Taken in a single dose. I am at 400 mg currently.
** I am personally not a supporter of supplements but that is just my preference and I have no real opinion on whether others should take them or not.

- Paul

Paul,You're definitely onto something.  I started taking 200 mg of caffeine, 15-30 minutes after my AM abx, on 9/1.  I upped the dosage to 400 mg yesteday and in the evening was able to climb one step on the stairs.  My knees are still wobbly so I didn't push it any further, but considering I haven't be able to climb the stairs for several months now.... I am feeling very positive about this "experimental therapy".  Thank you for sharing it with us :o)Jen

Paul, (or someone) forgive me and I don't mean to be rude, but are you associated with Dr. Stratton? I see you've been a member for 4 years and have input here before ....

in other words, who is the "we" and who is recommending this treatment?

"What we have been doing is taking one or more antibiotics along with gradually increasing doses of caffeine."

Sorry, if I've missed something..... just that we do have quite a few newbies on board..... don't want to get them confused.  I know there has been discussion before on adding caffeine (and/or  calcium pyrovate).

Thanks,

JeanneRoz

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Hi Jeanne,

I am associated with Dr. Stratton but I am not sure if I would want to speak for him on this. The "we" refers to myself and some people I know who are using this combination. My post should not be taken as a change in protocol. I am simply posting observations and results of alternative approaches that some of the less cautious souls here might want to consider...

- Paul

Hi, Paul, thanks for the clarification......I also am going to assume the caffeine combination shouldn't be used by those of us with adrenal issues????  I'd being flying out the window!

 

JeanneRoz

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Paul, for those that don't know (or remember) you are the person who originated the Pyruvate protocol (along with Dr Stratton). I'm just wondering if you might say a few words about how using caffeine compares to pyruvate. Also have you tried any other agents?

many thanks,
garcia.

Hunter: Don't think - experiment

 I think it is interesting that  you take the caffeine with the abx but the calcium pyruvate you take one hr before the abx. 

 

 

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.

Hi Garcia,

I think one reaches a point of diminishing returns on pyruvate and this does not seem to be the case with caffeine. I have tried a few other agents but caffeine has been the best of them. However you do bring up a good point here. I have been responsible for some ideas that were not as well considered as they might have been. Pyruvate was one of those and while it was promising and worked to a point, in retrospect it was not the best choice of adjuvants.

Anyway hopefully I learned something from these mistakes, both in refining ideas further and not judging efficacy too quickly. This combination has been tested far longer before posting. Some of the people have been on it for a year or longer and have either made very good progress or have completed their treatment.

That said it is neither quick nor easy although it is probably quicker and easier than any alternative.

- Paul

Hi Sharon,

Pyruvate was used to induce Cpn into a a replicating state where it would be more susceptible to the antimicrobial agents. Cpn makes more proteins in its replicating state and antibiotics generally kill pathogens through interfering with protein synthesis. So it would make sense to take something like pyruvate so that it would begin attempting to replicate prior to taking an antimicrobial agent(s). This approach works well initially but eventually Cpn is able to develop enough resistance to the antibiotics to survive.

Caffeine appears to work in a different way and instead of inducing Cpn into a replicating state, it may induce it into the elementary body state. This may cause it to lose its resistance mechanism and thereby become susceptible to antimicrobial agents again. Most of the substances people take to feel better have one of these two effects, either inducing Cpn into a replicating state or an elementary body state. In either event there is symptomatic relief as Cpn quit producing inflammatory proteins in their persistent state that stimulate the immune system. It is my opinion that inducing them into the EB state is the better alternative and so far that seems to be the case with a small number of people in an uncontrolled setting.

- Paul

Green tea with honey and lemon!

A year before being diagnosed with ChlPn i started drinking green tea with honey and lemon 6-10 large cups per day,using 2 lemons per day.This helped me and got me back to work after six months of being at home or in hospital,i also completly changed my diet to a very high alkline one, fruit,vegtables ,salad,fish,chicken and grains.

I don`t eat any dairy or processed food NEVER!

This did NOT cure me but made a great change in my health,i have now started Wheldon cap and i will win this battle.And a big thank you to you  all.  http://chinesefood.about.com/library/weekly/aa011400a.htm

http://www.honey-health.com/

CPN,cap oct 09,NAC2400mg,Doxy 100mg,full sups,Moving to dr Stratton protocol next month .

Thank you Paul for detailed  explanation. I sure would rather kill in the EB state then RB and/or cryptic.

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.

Induce it into the elementary body state? That's the non-metabolizing form, which isn't susceptible to any antibiotics, but only to NAC or other disulfide bond breaking agents. It also seems like it'd be harder to reach than the replicating state, since it requires building the EB's outer shell and discarding a large fraction of the cellular machinery.

One thing I think may have gone wrong with the pyruvate protocol is the timing: taking pyruvate an hour before antibiotics gives the germ a head start. (My thoughts on this can be found in much more detail here). By that reasoning, moving to taking caffeine at the same time as antibiotics would be an improvement even if pyruvate and caffeine had the same mechanism of action.

Mmm, coffee. What about tea or Pepsi? Coffee totally destroys my digestion and brings on IBS (even 1 cup). I took No-doz once in college (1 pill) and flipped out. What's a girl to do?!

Nancy

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Hi Norman,

I do not think converting Cpn to elementary bodies is a problem as Cpn EB's normally convert to reticulate bodies within a few hours. What happens is that the Cpn disulphide bonds in the MOMP (major outer membrane protein) are broken down by glutathione and then Cpn convert to RB's. In heavily infected cells, glutathione may be depleted as a result of this process happening continuously, hence the rationale for NAC which replenishes cellular glutathione. It should not concern you that this process will happen a few hours later as all of the antibiotics that are typically used have long half lives and are in fact just reaching peak concentration levels a few hours after ingestion.

I do not think anything really went wrong with pyruvate. I still like it but now think it reaches a point of diminishing returns. Were you able to complete your therapy on it?

- Paul

I didn't continue the pyruvate per se long enough to reach a point of diminishing returns. Instead I switched to a mixture of pyruvate and glucose, and then (since it seemed to have much the same effect) glucose alone. With pyruvate coming in gram-sized pills, and glucose coming in 50-pound sacks (and being quite tasty), it's easy to take much more glucose than one can reasonably take pyruvate. (I actually did buy a 50-pound sack, and went through it all.) Also, I never waited an hour before taking antibiotics, since I had theoretical objections to that, but rather took everything together, and then later switched to taking the glucose half an hour or so after the antibiotics.

What I eventually reached was a point where the regimen didn't seem to have much effect either way (positive or negative). I hesitate to call that a point of diminishing returns, since that implies, to me, that one is getting lower returns for each investment of suffering -- whereas in my case both the suffering and the improvement were diminishing pretty much in proportion to each other. This was more like finishing the course of treatment -- especially since, most importantly, I was feeling quite good.

Recently, since that was tailing off, I added metronidazole to the mix. I was a bit uncertain on how that would mix with pyruvate/glucose, since metronidazole has often been described here as operating only on the persistent form, and the point of the pyruvate was described as lifting the germ out of the persistent form. So it might seem that metronidazole might actually keep Cpn from being killed. But that language was always rather loose, and a better description might be that metronidazole operates only on Cpn which is repressed by protein synthesis inhibitor antibiotics. In any case, I've recently tried metronidazole both with and without sugar bombs, and the effect seems much stronger when the two are combined, than with either separately. It's too early for me to say anything about long-term effects, though.

As for EBs, the usual progression when RBs convert to EBs is for the host cell then to break apart and release the EBs. Are you thinking of this happening, or of the EBs later converting back into RBs inside the same cell? I've seen more than one paper which studied the persistent form, and reported that there were different variants of it, depending on how persistence was introduced. But I haven't run across any reports of RBs converting back into EBs and then back into RBs again, inside the same cell.

Paul, if I read this correctly, if we take NAC and coffee together, we can get cpn turned into the EB form to be broken. This sounds a lot easier than metronidazole. I am temporarily off the antibiotics (by doctor's orders), so I am trying coffee and NAC.

Nancy, I wonder if chocolate would work. We'd probably have to eat a lot to get the job done.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Paul, when you say the caffeine converts the Cpn to EB's what you are really saying is that it accelerates the life-cycle, i.e. it helps the Cpn metabolise & grow faster. They only become EB's just before the cell lyses so they can go and infect other cells.

It is questionable who has the advantage in this situation. On the one hand we can kill the EB's by getting them to open up prematurely if we take NAC etc. On the other hand of the 100(?) or so EB's released per cell only one has to go and infect a new cell for the Cpn to have "broken even". So deliberately getting RB's to turn into EB's is a risky strategy. It relies on having a near perfect EB-killing apparatus in place.

Considering the RB-phase, accelerating the metabolism will certainly make the Cpn more susceptible to antibiotics, but by virtue of the fact it is metabolising faster it will also make the Cpn more likely to become resistant to those antibiotics one would assume.

When I first started CAP I was drinking tea and so getting a shot of caffeine every day. This made my CAP productive in that I got a lot of Cpn-kill. Unfortunately I also felt that it accelerated resistance and after a while the antibiotics stopped working to even control the infection.

I gave-up caffeine and switched antibiotics. From then on my infection was controlled, but I got very little Cpn-kill. So both caffeine and the avoidance of caffeine are double-edged swords.

The way I see it caffeine is a way of tweaking the metabolic-rate of Cpn, which has both advantages and disadvantages.

Hunter: Don't think - experiment

Just a note on Dr. Powell's concerns about NAC. He found some evidence, and through experience, that for some patients it stimulated more allergic reactions (sorry, I don't have the references available) and was also concerned about increasing the availability of sulphur compounds given some of the Belgian findings about hydrogen-sulphide producing bacteria in the gut of CFS patients. I stopped using NAC myself and found I was feeling better for it, as allergic type reactions (itching and burning eyes, irritation, etc) had become commone with NAC dosing for me. He instead is using a couple of strategies to boost glutathione directly. You might look at the glutathione/methylation work of Rich Kronenberg for some other answers to boosting glutathione. Powell has been using an agent called OSR because it both boosts glutathione, is a tremendous free radical quencher, and binds to heavy metals so they can be excreted through the bowel. Yes, it also has sulphur compounds, but used with molybdenum supplements that appears to counter feeding the bad bowel flora.

I've studied caffeine recently because it is an Adensine antagonist. I have reason to suspect some of the fatigue and brain fog due to CFS/Lyme is an overload of Adenosine.

I was able to take small doses of caffeine (10mg) recently which mademe feel much better....until my adrenals went dry. For me it seems that die off reduces cortisol. I would be stuck in bed some days if it weren't for my IsoCort.

I know Caffeine pushes the adrenals and would caution against taking large amounts for anyone with symptoms of adrenal insufficiency.

 

If someone blocking Adenosine is part of this puzzle then Vinpocetine is supposed to inhibit Adenosine uptake and might be a suitable replacement for Caffeine.

 

Doxy 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFS since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

I personally tried pyruvate last summer for one month and then had to stop due to increasing symptoms. Not only all my cpn problems got much worse (except energy, which got better), but also problems with other pathogens, e.g. candida significantly worsen. So I am afraid, that we do not know, what pathogens we all feed by this aproach and the same can be with caffeine..

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years