A Speculative Personal Experiment with the Protocol

Hi Everyone,

I started taking ABX for Cpn about 10 years ago for CFIDS. I will not get involved with the specifics right now but as you can probably imagine back then there was not much data on what treatment and combinations worked well. So I tried quite a few things that had some pretty remarkably bad effects on me. Eventually I settled on a combination that was reasonably effective and while probably not as good as what is being used today was pretty much recovered after 2-3 years. After that I usually took one or two ABX as maintenance but sometimes went for periods without any.

More recently I realized that this had snuck back up on me, perhaps not to the degree that I had originally had it, but enough that I absolutely had to deal with it. I was not willing to go through the years of treatment again for a number of reasons, but mostly because I knew there had to be a better way. I tried a number of quicker alternatives like mega doses of some of the antibiotics, some combinations and antibiotics that had not been tried, etc. But none of these were effective and some had major side effects as you can well imagine.

Anyway sometime in late November I decided to try larger doses of a single antibiotic, specifically Flagyl. With just this one drug I made very good progress. Since I was not taking any other ABX at the time the side effects were quite manageable and I could handle larger doses. I took 1 gram in a single dose per week for a couple of weeks and then went to 1 gram in a single dose two times per week. This was for about a month and in late Dec and early Jan I had to take a 3 week break for holidays and some travel. I started back in mid January and have continued till now. So this is pretty close to 10 weeks of therapy total. I have tried some larger doses and more frequent doses but a single 1 gram dose 2-3 times per week seems to work best for me and until I see a reason to change this, I am continuing with it.

In this time period, I have made greater progress than I had previously made in 2-3 years. And while some things have changed between these courses, I am quite confident that this approach has worked an order of magnitude better than the previous approaches. I have discussed this quite a bit with Dr. Stratton the last few weeks and he agrees this might be a good approach although obviously with just a single person's input it is still just anecdotal. He thinks that if one were to use this approach that it would be better to take NAC with it. Also at some point late in the therapy, I will challenge the Cpn with some other antibiotics in the protocol. So essentially all we are talking about is changing the Flagyl (or Tini) dose a little and the order the antibiotics are added to the protocol. My current plan is to continue with 2-3, 1 gram Flagyl pulses for 4 more weeks and then add NAC and other ABX to the Flagyl. I will probably continue that for another 3 months but obviously this is a work in progress so nothing is definite.

Also I am not suggesting that the larger Flagyl doses have no side effects. As some here can attest, starting out with a large Flagyl dose can be very tough (Sorry about that Marie). But by limiting your Flagyl to a single larger dose there are some things you can do to attenuate the side effects. You can push a lot of fluids and sugars to help with the porphyric effects (Gatorade or Powerade are great for this). You can take all day sublingual doses of B-12 (probably every half hour) to hopefully limit the amount of heme your body attempts to make during that period. (I have not tried this yet but it should help.) And if you are truly desperate, have a physician with an open mind, and have lots of money, you could get a hematin injection on pulse days to attenuate the porphyric effects. (I have not tried this yet either but it should work great.)

I realize that a lot of this is anecdotal and I also realize that I am dealing with a different disease than many here and perhaps less of a Cpn load (Not so sure about that part though). But I have 10 years experience in trying to treat this and I am convinced that this is a better approach. Also I am quite aware of the reasoning behind the current approach of going after replicating organisms first and agree with it. But in practice for whatever reason, approaching this in the opposite order works much better, at least for me.

I would hope that most of the people reading this remain with their current protocol. It is proven and I know from personal experience that it works. However I would also hope that a few people here might try this other approach and let people know how it is working for them. If it works then everyone can benefit and if not... well I guess everyone can pick on me from here on out. I do not think that will happen though.

One other note... If this works as well as I think it may, many of you may recover more quickly than was previously thought. If that does occur, then I hope you will not be too busy getting on with your lives to drop in and encourage others. And especially don't forget to thank the people who have worked tirelessly to make this possible like David, Sara, Dr, Stratton, and Jim K. These people have given a lot of themselves with no expectations of anything in return and deserve everyone's gratitude.

- Paul

Paul- I welcome your reporting on this interesting experiment you are undertaking on yourself. I know you have a lot of personal experience and contact with Dr. Stratton, so you aren't doing this unsupervised. My main concern is that titling this "New Protocol?" tends to confuse a lot of folks. Despite your careful cautionary and disclaimers in the text, I know (as do you from what happened with the "easier pulse" posting) that a lot of folks misread or completely ignore these things, and see this as the new on the edge thing they just have to try to be onboard. It's the titles that stick out to people who are brain fogged and desperate for help. I myself have been guilty of not reading posts carefully enough and responding inaccurately.

So, I've taken the liberty as administrator of retitling your post to "A Speculative Personal Experiment with the Protocol" to make it clear in the headline as well as the text. Hopefully that will help buffer against enthusiasm and brain fog (a bad combo, I can attest) and still leave an open public discussion of interesting new possibilities.

On Wheldon/Stratton protocol for Cpn in CFS/FMS since December 2004.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Paul, I have also tried a 1GM dose of Flagyl--*see my kitkat2's first pulse blog.  It was wonderful for me-only a little brain fog, but tremendous pain relief in tight spastic muscles.  I am also convinced it works for me.  However, I just did the one pulse, so we'll see over time.  My next pulse is a couple weeks out, but I can hardly wait.  I have permanent pain relief so far, for which I am thrilled.

 I had a CFS-type syndrome in my college years, following an illness.  I was an undergrad RN working at a hospital at the time.  I saw many doctors at that time--all simply shrugged their shoulders in confusion and I did not get a working dx.  I would get a little better from time to time, but I had one nasty sinus infection after the next.  I took about 5 courses of Erythromycin per year--but the infection would always return.  That went on for 18 years.  So, it's been a long haul for me--culminating with an rrms dx about 4 yrs ago.

Thanks for sharing your experience(s), every little thing help us to complete this cpn puzzle.  :)

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Hey Jim,

That was probably a good idea although I do still stand by the "easier" pulse posting. However I do not think anyone should start it with 2 grams of Flagyl (or possibly ever take 2 grams). I took 500 mg last night to see if what I thought I remembered from this was true, that 500 mg had as much side effects as 1 gram without most of the benefits, and definitely feel like this is the case. The only thing I get from a 500 mg dose is tinnitus. Either that or my phone has been ringing all morning ;)

Also I should mention that during these 10 weeks I did try to introduce doxy, zithro, and NAC at different times. Every time I did that, I had a set back that caused me to lose a few days or week in my effort to erradicate as much of this as possible in the shortest period of time. So IMO these drugs had a negative impact on therapy, at least in the early going.

- Paul

I know you have a lot of personal experience and contact with Dr. Stratton, so you aren't doing this unsupervised.

That is an interesting take. Let's just leave it at one of us is not unsupervised Image removed.

- Paul 

Hey, intersting post! I am going to add in here so it is right in this thread that I am fine, thanks for thinkig of me Paul. I will not do a 2 gm pulse again, but I might try a one gram some time in the future. My doctor and I had a great talk about it yesterday and we agree that I had a wonderful upswing in function at one week post pulse but that it was hard on me. the "die off" just happened too fast for my brain with it's limited capacity to keep up with in terms of clearing the endotoxins created. I am VERY closely supervised as I work in my doctor's office and we have become friends whose common interest is medical research. She sees me walk and talk and live all the time. I'm the giunea pig for this protocol, part of the reason I was so keen to try the 2 gm. I was just very curious about how it'd work, because I like the theory but I was unprepared for the level of reaction. But I do not want anyone to think I was unduly influenced. I have enough background to have made a different decision, but I did not want to. I wanted to try this to see how it would work but for MS patients I will suggest this: stick with the 5 day pulse at ordinary dose levels. the medicine trickles in at a rate your brain can clear and by the time a month has gone by with you doing 1500mg a day for 5 days, the total dose you've had is 7500 mg in that month. If you do a 1 gm pulse every week that's only 4 grams at the end of the month. Do not feel like you are doing something less or missing out. The brain is a special area of the body and it has limited abilities to clear out toxins so allowing the flagyl to trickle in at a slow rate is a good, and already anecdotally proven, plan for MS. Blessings Marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Hi Marie,

I am glad you are recovered and not still mad at me;) And I am really happy you got some benefit from the larger pulse. I do disagree with the total dosing idea though. We do not know what the MBC (Minimum Bacteriocidal Concentration) is for Cpn in vivo. But it would not be unreasonable at all to suppose that it is greater than 500 mg. Remember that Flagyl has only been tested and used on extracelluar organisms and that the concentration outside of cells is almost certainly greater than the intracelluar concentration. The argument that the cumulative amount is the same as the short term amount of a drug only applies to some non existant drug that stays in the body indefinitely.

OTOH my personal feeling is that 2 grams did not provide any additional benefit over 1 gram and certainly caused more side effects. 3 x 500 mg doses during the day would get you to roughly the same concentration as a single 1 gram dose (assuming a half life of 7-8 hours and normal dosing separation) BUT that might only mean your body and Cpn have to expend extra energy for a longer period time attempting to pump this out of cells via efflux pumps.

Truthfully I am not sure what is best here. It may be that you need the constant concentration of Flagyl in which case 3 x 500 mg during the day would make sense. I reallly do not have  strong opinion one way or the other on this. I can only say the single 1 gram pulses have worked much better for me.

- Paul 

Thank for excellent review to you Paul and also to others.

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

D W

There are reasons for thinking that the MBC of metronidazole against cpn 'frozen' by protein-synthesis inhibitors may be quite low. Metronidazole enters the bacterial cell by passive diffusion. Of itself it has little antibacterial activity, but in susceptible bacteria its highly reactive metabolites break the bacterial DNA at the AT base-pair; these are single-strand breaks, and are repairable. In ordinary anaerobic bacteria the outcome (death or survival) is decided by the equation of breakage versus repair. Under normal circumstances, the organism, at the first sign of DNA damage, will switch on its 'last chance saloon' repair mechanism. However, this repair mechanism requires the synthesis of at least 15 proteins. The 'frozen' organism is unable to make them. Thus DNA damage is likely to be ongoing and remain unrepaired. New metronidazole is also entering the bacterial cell by passive diffusion all the time, there being a concentration-gradient across the bacterial cell-wall as the intracellular metronidazole is converted to active metabolite. Further, one might postulate that the endosome is likely to maintain a high concentration of active metabolite: the organism's refuge becomes its death-chamber. If this is the case, one could make an argument for a sustained rather than a high-dose medication. Speaking from my own experience I experienced little during my first five-day pulse of metronidazole (400mg three times a day): the fireworks came on day 4 of the second pulse, and continued long after stopping the drug. And what fireworks they were. I wish I had filmed the muscle fasciculations. Metronidazole does not now affect me, apart from its rather nauseating taste.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Does flagyl make the breath smell as bad as it tastes?

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)

David,

this is what my doctor wanted to know. I will take your explanation with me on my next visit. She did not know, how metronidazole affects chlamydia. So I hope this will help.

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

Despite your careful cautionary and disclaimers in the text, I know (as do you from what happened with the "easier pulse" posting) that a lot of folks misread or completely ignore these things, and see this as the new on the edge thing they just have to try to be onboard.

Jim,

Wouldn't people reading posts on the internet and doing harm to themselves just fall under "natural selection" and serve to improve the breed? Just thinking out loud here...

Hey, that did not just get posted did it? Uh oh, this is going to get ugly... Image removed.

- Paul 

 Paul- Ah, a Social Darwinian at heart, are you. Still, my religious roots insist that I offer protection to the weak, small children, and the brain fogged (I think it's in the Talmud somewhere).

On Wheldon/Stratton protocol for Cpn in CFS/FMS since December 2004.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

D W

It's neat, Lala. The metronidazole is active against chlamydia only when protein-synthesis inhibitors have forced the chlamydia to switch to a sluggish anaerobic pathway. The same protein-synthesis inhibitors then prevent repair of DNA damage caused by metronidazole-metabolite. Synergy on two fronts: I have to say it again - it's one of the neatest concepts in antimicrobial therapeutics. My admiration goes to the Vanderbilt workers who first considered this.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

David, my doctor also told me it is not proved that NAC is potent against chlamydia EBs. I printed whole Treatment Handbok for her, but I am not so educated in microbiology, that I could explain to her, how it works. Would you have a one more minute to give us short explain as you did with metronidazole? It would be very worthful..

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

oh, I just read about opening disulphide bonds in proteins

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

D W

Lala, that's just it; the spore-like extracellular elementary bodies have coats studded with proteins whose integrity is maintained by disulphide bonds. Reduction of these with penicillamine (dimethyl cysteine) has been shown (Vanderbilt) to open EBs prematurely and fatally. N-acetyl cysteine should work just as well. (It also protects the liver and replenishes glutathione, a key antioxidant.) It effectively halts the life-cycle of the organism and gets rid of an extracellular bacterial load. Very important. *Pop* (There goes one now.)

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

I don't mean to hijack this thread, but speaking of bacterial load--are there any tests my doctor can conduct to ascertain my bacterial load ahead of time?  I'm an RRMS patient and am preparing to begin the Wheldon/Stratton protocol (assuming she continues to cooperate with me) in April.  I think she (my doctor) was a bit apprehensive about beginning the protocol without a means to identify something discernable, doctors being scientists and whatnot.

Edit:  I originally posted a question about pophyria and heme, but as I suspected as I wrote the post, I immediately found the information in the handbook.  I'm absorbing it now.  Kudo's and many thanks to all of you who are contibuting to this site.  You are rendering an invaluable service.

John

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

 John- There are no quantitative tests for bacterial load. The best would be a serological test which shows positive antigens to Cpn, keeping in mind that the tests are particularly useless for MS as th infection is localized and antigens or PCR proteins are simply not found in significant concentrations. Even in spiked blood samples (where a known quantity of Cpn is added to blood sent to a lab) the false negative rate I read in a recent study was 27%! This means that 27% of the samples which were spiked with Cpn were found by labs to be negative for Cpn.

Before and after starting abx porphyrin tests in urine and stool might be a better indicator, although flagyl seems to be the bigger culprit. Depending on how sensitive the tests used it might give some hard support.

But all of these can backfire, and the real proof of the pudding is that there is plenty of accumulated evidence to warrant an empirical protocol. Your reactions, improvement, or it's lack are what is needed, and that the medications used are relatively benign when used in this way, ie low risk for high possible gain.

I'll post a new page in the handbook that has a downloadable article detailing the chemistry of Cpn and secondary porphyria by Stratton and Mitchell. You can also find a superb and clear explanation in patent #6,884,784 page 31. I think we have this somewhere, but I'll throw a linked page into the handbook for a pdf. Look for these in the "Site News" box.

On Wheldon/Stratton protocol for Cpn in CFS/FMS since December 2004.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Very Old Topic Postings almost 4 years ago.  Some interesting conversation here.  Before my time  of dx for Chl.Pn. and start on CAP.  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