Cpnhelp.org

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, 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.

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

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.

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

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.

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

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

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.