22 Nov 2020
Author
sara_in_sydney
Title

How many people have eradicated their CPN via the CAP protocol and how long did it take?

Body

Hi,

Coming up to 2 years now on the CAP.  I was a bit premature in thinking it might have gone a year ago.  Progress is so slow, it is hard to measure, but I think I am able to do more than a year ago (when not affected by a virus, which is a frequent occurrence).

How many people have had success getting rid of CPN using the CAP?  And how long did it take you?

Comments

My Dr (who is a specialist in CFS) is of the opinion that if the antibiotics were going to work, they should have worked by now, although so far he is supporting me as I want to continue with them.  I fear if I stop now, I may get worse again and undo the hard work of the last 2 years.  On the other hand, I don't plan to be on antibiotics forever.  My liver AST and ALT appear continuously elevated, but not by too much.  My understanding is that this is common on the protocol.  

Any more thoughts on this?  Thanks for taking the time to read.

Sara

Not cured, but 2 years in with continuous improvement - so your doctor would be incorrect if he was my doctor... 

Mild, asymptomatic liver ezyme elevations are defined as less than five times the upper limit of normal - for perspective.

TomF - 50 yrs old, diagnosed CFS Jan.2000, CPN IGA 1:32 IGG 1:128 feb 2017

Cap since Dec 2018

TomF, I think that there are lots of people on this site who would agree with you and would feel very miffed if they were told that two years was enough to get better. I wouldn't have wanted to carry on with abx forever but after three and a half to four years I was confident enough to finish. And guess what? I could once more work as a fine-artist producing maybe better paintings than before.

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.

Everyone's situation differs, I have CFS. Every Metronidazole pulse make my tissues burn and causes what I would describe as an injury. 

 

TomF - 50 yrs old, diagnosed CFS Jan.2000, CPN IGA 1:32 IGG 1:128 feb 2017

Cap since Dec 2018

Dear Sarah

How have you been? Any news on whether David's death could be caused by a post Covid medical situation? The news of his passing is so difficult to digest. From your posts both of you were doing fine post Covid and there was nothing you wrote that suggested David could fall ill so seriously.

How have you been coping? It must be so very hard I cannot even begin to imagine.

My thoughts with you. Take care. Hope your walking has come back to what it was before your loss.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Dear Neena, I'm sorry, but I have only just noticed this. No, David's death was nothing to do with covid but was a second subdural haemorrhage. He had a previous one about eighteen months previously but he seemed to have completely recovered and very quickly. The bleed this time though, killed him outright.

Sarah

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.

Hi Sara.

I am 44 years of age. I started being sick at the age of 27 and found a doctor nearly 5 years later, facing a serious health decline meanwhile. I have been on CAP since late 2008. It's already over 12 years and I am still not cured. I am much better but it cannot be undermined that chlamydia pneumoniae pathogen devastated my entire life. After 12 years I am confident to say that eradicating fully systemic loads of this pathogen is virtually impossible. You get better, but you get only certain amount better, and even reaching this certain amount of improvement requires a subliminal degree of dedication. Maybe it is possible to eradicate this invader over period of 30 years, but I will be in my mid 60's so from this very perspective sounds pointless and delusional. Sorry for this rather pessimistic voice over this subject, but this is just the way it is.Hope your path will prove otherwise. BTW. This treatment addresses right cause and it helps. Sadly not enough. The flip side of the coin is the fact I was severely sick. I would be dead by now without CAP. But the better you get the more you expect.

 

 

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

Hello Michael,

I am sorry that you don't feel better after all this time but maybe the root cause of your chronic fatigue is something other than Cpn.  When were you last tested?  having had my last mri not much more than a year ago I know for certain that I have gone for eighteen years with my MS not getting any worse.  I still can't run, but I can climb stepladders to replace lightbulbs in my high ceilinged house.

Sarah

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.

I've been tested for Cpn after the disease took control over my body and created this vicious CFS cycle. Something like 5 years from it's systemic inception. The doctor addressed most issues, therefore I was tested for most pathogens, moreover later practical experience with CAP and excessive die-off's just proved we hadn't left no stones unturned.

The CAP worked and still works, yet the level of devastation Cpn has left me with after only 5 years of systemic inflammation from a vantage point of a guy who still considered himself as a healthy stamina equipped person, seems unprecedented.

The flip side of the coin is the fact I started getting paralyzes just before I met the exceptional Doctor in my region. I wasn't far away from a next health decline. This disease seems to behold an infinite intracellular potential in devastation. Not only the cell communication department is compromised but the ATP potential seems to be simultaneously hit hard.  After 12 years of protocols I control the disease, reduce inflammation potential year by year, yet I only rebounded neurologically like 40%. Therefore not being terminally ill does not justify full recovery prognosis. I wish it was different but this pathogen is still beyond my imagination, it even exists. After all those years I haven't gotten used to the fact something like that even exists. I' m equally shocked neither the main stream docs nor quacks recognize it, this is outrageous.

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

Michael, out of interest, are you taking azihromycin, clarithromycin or roxithromycin together with doxycycline, because your signature implies that you are taking all three!

Sarah

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.

I rotate every 2-3 weeks with these three macrolides you've mentioned (one after another) plus I do apply doxycycline simultaneously. You have to rotate within 2-3 week periods due to the activation of liver cytochrome which  partially inactivates CAP potential, if administered longer.      

I used to make some fluorochinolone shifts in between, nevertheless I haven't noticed any better outcome over traditional protocols. I also administer ACC as I should.

This disease devastated my life and it killed me as an individual. I do not have a disability but the protocols provide only minor effects on systemic Cpn related inflammation. Cpn is from another league. Whilst I ended 12th year of my treatment I do continue CAP mostly for the fear of a potential disability burst. I will never recover with CAP as it's just such a disproportion between this evil bateria vs. CAP potential.

Most patients in my doctor's clinic already quitted unless their conditions were as sever as mine. The longest time they usually persist on CAP is about 5 years. 5 years treatment seems to be the end game plan even for those most ambitious. If not severely ill, the outcome and the perspective seems rather unfortunate :(.

My problem is the fact that my real problems haven't even started yet. This terrifies me like crazy. 

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

Where are you getting this business of having to rotate macrolides?  It's not something I've heard before, and a quick Pubmed search didn't find me anything.  I mean, rotating them shouldn't hurt, but has someone actually measured blood levels and seen a decline over the long term?

Anyway, there are lots of potential microbial causes for CFS, and even for Cpn there are more things you could try.

I got better in double quick time by just using roxithromycin as the macrolide, but then, I only had progressive MS.

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.

Michael, what are your real problems that haven't even started yet. How do you even know that they will start? I'm worried.

Sarah

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.

Sarah. I am stuck with this disease. Combined Antibiotic Treatment barely works. I will be stuck with this zombie state for another decade. My social life is dead. I have no way to go from here. I already spent a decade like this and will not handle another one. There is no cure for chronic CPN and there won't be in a foreseeable future.

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

But Michael, you say that there is no cure, yet there are people here who can say that there is. People who have no reason to still be here, but stay to encourage other people. Maybe the continual swapping of macrolides doesn't suit you: I took nothing but roxithromycin, apart from one day when I had run out so took one of David's azithromycin. I never normally suffer from headaches but that day gave me a really atrocious one. Luckily more roxithromycin arrived from France the next day! 

Another thing is that maybe metronidazole would suit you better than tinidazole.  You will certainly feel it if you try that. 

Then there is rifampicin, which you should really get on appointment, will turn your wee red and make you feel as though you are walking round in circles.  I took it in place of doxycycline for six months, before starting intermittent treatment, because you can't keep stopping and starting it.

So you see, you are not stuck with this disease and in six month you might be fighting fit.  Boadicea had a very hard time starting but has now finished and is feeling better than she has in years.  So never give up because all is not lost.

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.

You have to rotate macrolides in CAP at least every 3 weeks cause they simply loose majority of its pharmacological potential while cytochrome resistance kicks in. 2 weeks is the best interval yet it is much more manageable to rotate every 3 weeks cause the die-off/porphyria  will slightly lessen intensity. This is much more important for the beginners. I'm not saying CAP does not work. Im saying I will probably get rid of this systemic disease in something like 25 years in total. Quoter of a millennium. I will be 60 YEARS old while I end this mess. Tell me what would I do this for? I will probably become suicidal like 5-10 years from now, if not earlier. From this perspective you cannot call CAP an effective treatment for this unimaginably mad disease. Even though I'm a professor in this field after all these years, this disease is just still beyond comprehension.

BTW: I use lots of taurine/caffeine instead of metronidazol.

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

Where are you getting this information from, Michael30? Can you reference it, please? Many of us here have done well and made good progress treating Cpn by not rotating macrolides in the way you are suggesting. I only ever used roxithromycin and being on it long term caused no problems.
Also, there are many experienced Lyme Disease doctors who are familiar with long term combined abx treatments who also find no need to rotate macrolides as you are suggesting. You seem to be alone with this view - whilst also reporting that CAP isn’t working for you. Perhaps you are making it more complicated than it needs to be.

I’ve no idea why you believe it will take you 25 years. Again, that is not the experience of many others.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

I am a veteran of CAP along with my doctor (double veteran). As much as majority was never right in worlds history, I do not need to be questioned in this kinda doubtful manner cause I do not really care. 

Nevertheless it is extremely easy to prove you're wrong cause a long term usage of a single macrolide stops triggering significant die-off/porphyria reactions time respectively. This treatment targets the underlying cause much harder if you rotate macrolide treatment on a regular basis and avoid further meds resistance.

Long term usage of a single macrolide would basically gravitate your treatment method from antibacterial towards immune moderation which simply falsifies your true outcome. You're basically substituting autoimmune meds then. 

I'm fighting a spectacular systemic chlamydia pneumoniae infection and yes these protocols, even if administered very cautiously, barely can overcome it. Therefore a 25 years perspective is absolutely realistic.

 

Btw. I stopped using autocorrection in my phone cause it makes to much ridiculous mistakes I am still sorry for. ;)

 

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

Michael, please don't talk to Boadicea in this manner.

I think that you are totally wrong about macrolides, since both Boadicea and I stopped taking any antibiotic years ago.  We both took nothing but roxithromycin.

The only thing you are right about here is saying that autocorrection can cause one to make ridiculous mistakes.

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.

Thankyou Boadicea: if David was reading this he would be none too pleased, being a consultant medical microbiologist.

Like you, I never took any macrolide apart from roxithromycin and it was only another three years of that and I was ready to stop altogether.

Sarah

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.

Michael you do need to pulse either metronidazole or tinidazole in orderto totally eradicate Cpn. Just taking taurine and drinking coffee won't work.

Sarah

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.

My practical experience shown otherwise. Tinidazol and especially Metronidazol target cryptic forms (cysts) with greater health risks than taurine/caffeeine pills. I used to take metronidazol, mostly tinidazol but with time I realized that an everyday consumption of ATP boosters (taurine/caffein) provided comparable outcome.

Taurine and caffeine uses ATP mechanisms to boost conversion to active reticular forms, on the other hand meds target cryptics/cysts directly which is much more oppressive and generate more possible cellular oncological risks. 

You could also argue that ACC (acetylcysteinum) would not be a proper abx substitute, nevertheless it truly is.

 

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

Michael, I am fully aware that tinidazole and even more so metronidazole hold risks if taken every day. This is why David developed pulsing, for roughly five days a month.

I obviously can't force you to take the treatment correctly but it is worth remembering that four regular writers here: Norman Yarvin, MacKintosh, Boadicea and myself, all four started treatment many years ago but have all now finished and would claim to be recovered.

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.

What Michael is saying about having to rotate drugs is not inherently bullshit.  "Cytochromes" are mostly liver enzymes, and it can happen that when you take a drug for a long period of time the liver enzymes that detoxify it get geared up.  But with most drugs that doesn't happen: people take them indefinitely without having to increase the dose to overcome the liver.  If it does happen it's indeed easy enough to prove, or at least easy for a research lab: measure blood levels of the drug when people first take it, measure it again after they've taken it for a month, and compare the two.  (Measuring blood levels can take some sophisticated equipment that goes under the general names of chromatography and mass spectrometry, but that's not unusual equipment for a laboratory.)

That's the sort of experiment I did a Pubmed search for; I didn't find anything.  Possibly a longer and better search might turn something up, but this sounds to me like just something his doctor told him and which might just be that doctor jumping to conclusions.

There are of course other ways one can develop resistance to drugs, or more interestingly how one's bacteria can develop resistance.

As for taurine and caffeine, the idea of those came from Paul Griffin, and his notion was that they would work via altering pH rather than via ATP.  I didn't think he made out a clear case for that mechanism; the body normally keeps pH under tight control, so it's not something you can easily mess with, even if it makes a difference in cell culture.  ATP is perhaps more plausible, but still it's the kind of hypothesis that would need to be validated by lab experiments rather than something that one could just conclude from patients' experiences.  I myself was trying something along those lines at one point: just using massive amounts of glucose to boost available energy.  I couldn't ultimately tell whether it had much effect (though it did seem to have some), and eventually went back to metronidazole.

Thank you, Norman. It just seems unhelpful that Michael is advocating a different way of doing things, without having yet referenced this, and whilst also saying he remains ill, and seems to believe he will continue to do so.  So it seems only fair to mention that others, over many years now, have made good progress when following the protocol without rotating macrolides.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

You can do what you want like I stated before. The only true legitimacy here is practical. You have a very limited medical back up to even question things taken from my and my great doctors 12 years practical experience.

I have a broad experience with metronidazole. Actually the full spectrum of it. I went through massive dementor phenomenon known for some of the most knowledgable people here. For those not familiar with the nomenclature it is a reaction when a massive number of reticular bodies are dumped from dying cryptic forms/cysts. 

I reached this tipping point which literally smashed me for something like a 1 NEXT YEAR. I barely functioned and the body was hardly wiping out porphyrins, not to mention the cellular readjustment/replacement/regeneration.

It might be slightly longer yet a much safer way to boost cellular capabilities with ATP taurine/caffeine triggers to get rid of cysts, instead of smashing them down using metronidazole.

Chlamydia pneumonia sufferers are facing cellular lysis via means of die-off/porphyria yet I am not sure if exploding cryptic forms/cysts with metronidazole does not lead to cellular necrosis. As much as I recovered from this drastic dementor reaction I'm not entirely sure if passing this tipping point nearly a decade ago, hasn't limited my recovery potential up to this day.

Otherwise, you can obviously do what you want.

I never said this

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

I’ve no idea, Michael30, whether you realise how rude you come across in your posts. Why so defensive, I can’t help wondering.  You are certainly not in any position to question my own experiences or capacity to question what you are saying. Wishing you well…

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

I'd rather find, a pretty obsessive doubts something I consider impolite especially in a field that is "under construction" up to this day by its practitioners. This is hell of a disease where few interpretations can be considered conclusive. Open mindedness strongly suggested.

CFS, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine/Roxytromycine, Doxycycline 2x100mg, Caffeine every day, Tinidazol for pulsing, ACC 2 x 600 mg -  treatment duration: 24 months

And thankyou also Norman. When I first started treatment I spent over a month just on doxycycline, whilst waiting for the roxithromycin to arrive from France. I was never sure why he wanted e to use roxithromycin as the macrolide when I could have easily used the readily available azithromycin. I'm glad that he made this choice though, because it worked so well for me.

When it came, three months later, to starting metronidazole, I was able to do the five day pulse straight off.  I can't say that this was due to my choice of macrolide though, but rather my tough metabolism.  Boadicea for instance, spent months on building up  her third antibiotic and Michael, after two years of treatment, seems to be thinking that he will never be cured.

Sarah

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.