Cpnhelp.org

Hi marvel, so what is your question?

Sarah

hi,

introduction:

i have been sick with a an awful lot of strange symptoms since 2015. the most disturbing are fatigue, brain fog, pain (head, legs, arms, back), blurry vision, depression, absence of emotions... 

finally in 2019 i was "diagnosed" with lyme. lyme seems to get way more attention these days than cpn for example (justified or not i dont know.). i only discovered this website by a coincidence some months ago realizing that cpn could give one similar symptoms like lyme. anyways i got treated with 3 months of ABx back in 2019: minocyclin, azithromycin and tinidazol. mino made my depression go away within 3 days. awesome. adding azi some weeks later gave me back energy big time. didnt notice anything from the tini pulses but the whole treatment over 3 months definitely did get me in the right direction. there were times when i felt almost healthy, especially when i added the azi, which did the most for me i think or maybe it was the combination with mino. 

after the treatment my symptoms came back slowly. 

in 2021 i wanted my doctor to test me for cpn and mycoplasma (isnt it his job to make suggestions whats wrong with me and figure it out? oh well...). both anitbodies came back positive. well that was at least something. all the lyme tests being done showed negative results for me except one which is not even a very well accepted test for lyme. 

i am currently self treating myself with i.m. thymus peptides. i can not recommend these enough tbh. i made huge improvements on these being on them since may 2021. no side effects except die off symptoms. i can still feel them doing their job and im still making progress, having the feeling that these alone might do the job when i take them for a year or so. nevertheless i probably want to add ABx soon just to make sure i get the best treatment possible. 

questions: 

does anybody have the data that stratton and wheldon base their recommendation of NAC on? i remember doing some research into NAC when i still thought i had lyme. the result was that taking NAC orally could not even get you close to the concentration needed to have an effect on lyme bacteria in vivo. i also found this posted in 2011 by D W (david wheldon?):
"I once did minimum inhibitory concentrations of NAC against common pathogens and found no activity at concentrations which could be achieved in the body."

so does oral NAC even reach the concentrations to work against EB in vivo? im worried about reinfection with EB after stopping ABx. maybe amoxicillin would be a better choice against EB? sarah when did you start your NAC and did you take something else against EB to prevent reinfection?

should i choose azi, roxythromycin or clarithromycin? according to the wheldon protocol roxi reaches good levels inside cells. i have some other information here at least for neutrophils with roxi being below measurable intracellularly, table 4: 
https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(15)…

i read sarah saying in another post that roxi wont give you as many problems as azi does (probably meaning side effects). is that the reason for roxi?

why does stratton recommend clarithormycin? because of higher intracellular levels? i would like to see some data for that as the above study shows azi giving the highest intracellular levels (which might be irrelevant after all because the minimum inhibitory concentration for cpn should be easily reached by azi or carli).

i am a little confused why there are different opinions on the macrolid AB being applied. is there not sufficient  data to show which AB reaches the best intracellular levels?

regards
 
 

Marvel, I don't have EB and didn't even know what it was until I looked it up. David was treating me for severe progressive multiple sclerosis and the treatment he chose for me was very successful.  i took doxycycline and roxithromycin but many people over here chose azithromycin as the macrolide because it was cheaper. Unfortunately some people couldn't stand azithromycin but found roxithromycin too expensive.

Roxithromycin is now available in the US and Stratton often prescribes it.

After three months I took five day pulses of metronidazole together with the other antibiotics, but I could never take it for longer than five days.

Marvel, I started taking NAC after about fourteen months and you can easily find its main use by looking it up.  Not being an antibiotic, I really don't know how well it might work for your EB, if that is what you have.

I don't  if there is another DW lurking around but I am pretty certain that he never did any of the NAC tests you mention, because he wouldn't have had the time, being a bacteriologist!

Here is his page about NAC - N-acetyl cysteine (davidwheldon.co.uk)

Sarah

Sarah

Marvel, you must look at the film on the first page of this site where you will hear  David talks about the importance of taking the antibiotics for at least a year:

  Welcome Chlamydia Pneumoniae Help and Treatment. | Cpnhelp.org

This is very important if you have Cpn.  I know the film is about MS but the treatment is the same for all chronic diseases caused by Cpn.  YOU HAVE NOT TAKEN ANTIBIOTICS FOR LONG ENOUGH.

Sarah

Treating yourself with "i.m. thymus peptides" sounds kind of like a vaccination.  I mean, I'm presuming "i.m." is intramuscular.  The difference I suppose is that you're not including an adjuvant like a vaccine would, but still it sounds quite odd.  Is this supposedly for Lyme disease, or what?

Lyme disease has come to serve as a shorthand for anything that can be treated by long-term antibiotics and that mainstream doctors deny.  I ran into a podcast once about Bartonella where the doctor being interviewed said that when he treats his patients for Bartonella, he tells them he's treating them for Bartonella, but they tell their friends that he's treating them for Lyme.  And he doesn't really blame them: that's just what "Lyme" has come to mean in popular language.

thx sarah for the NAC link. by EB i did mean the elementary bodies of cpn and not ebstein barr virus. i will read through it. 

yes i.m. means intramuscular. im using russian thymogen (https://ruspills.com/thymogen-buy-online/) which is actually advertised as being effective against persistent or severe chlamydial infection. but i didnt know i had cpn antibodies when i started using it. the great thing with this is that it has no limited work mechanism against a specific infection but instead is a immunemodulator/stimulator. same thing goes for thymosin alpha 1 which is sold in some countries as zadaxin and also is used as a vaccination adjuvant iirc. for me personally i wouldnt call these peptides drugs as they are playing in a completely different league than conventional pharmaceuticals. they active the bodies own immune system and let it do the work while being completely free from side effects for me so far. im still pondering whether or not i will add ABx or will keep going with the peptides alone as the effects are really astonishing. 

yes lyme has become somewhat of a word describing different kind of infections which is unfortunate in my opionion because it does make a difference. i wouldnt have considered a new ABx treatment if i hadnt found out about cpn because my impression from researching lyme was that another ABx treatment for maybe a year wouldnt benefit me because the symptoms would come back eventually. 

Okay, "thymogen" is a dipeptide, glutamyl-tryptophan, so not big enough for an antibody to be generated against it (as in a vaccination), and injected because otherwise the gut would digest it into pieces.  The vast majority of the research on it seems to be Russian, except with one big study in the US on Kaposi's Sarcoma in AIDS, in which it flopped: made the disease worse.  It's sold as being good for a wide variety of conditions (not just infections but cancer and radiation damage), which has me skeptical.  You do realize that another interpretation of your experience is that the antibiotics did all the heavy fighting, that they left your body in the state of just having fought a war, and that afterwards you just naturally recovered and the injections did nothing?

@sarah yes i very well undestand what the treatment is aiming at. i was only concerned about the EB of cpn being destroyed by NAC alone if that would suffice for the EB being handled. i havent read the NAC page of your husband yet. 

@Norman Yarvin the ABx treatment ended on 4/30/19 and i gradually got worse after that again with being back to pre ABx maybe 3 months later. i started the peptides in april 2021. so there are almost 2 years in between. i also didnt take the ABx for long enough at least to the general recommendations of the cpn protocols. furthermore there is a clear chronological connection between taking the peptides and starting to improve again shortly after.

thx for the us study that you said didnt work out so well. i will look into that.