POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

[lngnstrng]

I don't know if this is relevant to the improvements some people notice while on antibiotics, but I will leave it here.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7253499/

My own symptoms got better while on the Wheldon antibiotics protocol for cpn, but I relapsed some time after stopping it.

Edit: I got rid of the chronic cough I had for a decade, the protocol helped me with the cpn

how long have you been on the protocol and what was your diagnosis? did you take all the antibiotics from the protocol? why did you stop?

 

[oncemoreuntothebreach]

I was on the protocol for almost 4 years, I had IFA IgG 512, a chronic cough for 10 years. A short course of azithromycin (before I knew about the Wheldon protocol) temporarily cleared my cough, and I relapsed a few weeks later. Also positive on the NAC test.

I took all antibiotics plus NAC religiously. However, I believe metronidazole did the most work for my non-cpn symptoms. I'm not sure if there was any synergy.

I stopped because my cough cleared at some point, and I wasn't seeing any more improvement on my non cpn symptoms(At that time, I attributed all my symptoms to cpn.). I also began to experience some minor stomach/gut upset at that time and I fearing I was pushing my luck too far.

My non cpn symptoms relapsed with a vengeance 16 months after I stopped the Wheldon Protocol.

18 months after I stopped the protocol, I was weak positive on the Armin Labs Elispot and IgA test for cpn.

 

[lngnstrng]

I was on the protocol for almost 4 years, I had IFA IgG 512, a chronic cough for 10 years. A short course of azithromycin (before I knew about the Wheldon protocol) temporarily cleared my cough, and I relapsed a few weeks later. Also positive on the NAC test.

I took all antibiotics plus NAC religiously. However, I believe metronidazole did the most work for my non-cpn symptoms. I'm not sure if there was any synergy.

I stopped because my cough cleared at some point, and I wasn't seeing any more improvement on my non cpn symptoms(At that time, I attributed all my symptoms to cpn.). I also began to experience some minor stomach/gut upset at that time and I fearing I was pushing my luck too far.

My non cpn symptoms relapsed with a vengeance 16 months after I stopped the Wheldon Protocol.

18 months after I stopped the protocol, I was weak positive on the Armin Labs Elispot and IgA test for cpn.

what do you mean by non cpn symptoms? so you suspect you have had more than a cpn infection?
do you think there was a connection between stopping the protocol and your symptoms coming back?
my gut is fine so far. im constantly taking pre and probiotics. i hope it stays that way.

 

[oncemoreuntothebreach]

what do you mean by non cpn symptoms? so you suspect you have had more than a cpn infection?
do you think there was a connection between stopping the protocol and your symptoms coming back?
my gut is fine so far. im constantly taking pre and probiotics. i hope it stays that way.

Yes, please refer to my first Introduction post. The antibiotics may have had some immunomodulatory or antiviral effects on me, as suggested in the research paper I linked earlier.

While following the protocol, I felt good during the first few weeks of each metronidazole pulse. However, about a week before the next pulse, my coxsackie symptoms would return. I strongly believe that metronidazole was beneficial, although I am unsure of the exact mechanisms involved.

 

[lngnstrng]

Yes, please refer to my first Introduction post. The antibiotics may have had some immunomodulatory or antiviral effects on me, as suggested in the research paper I linked earlier.

While following the protocol, I felt good during the first few weeks of each metronidazole pulse. However, about a week before the next pulse, my coxsackie symptoms would return. I strongly believe that metronidazole was beneficial, although I am unsure of the exact mechanisms involved.

im just trying to help. dont misread this.

ok so you never actually finished the wheldon/stratton protocol? id have to look it up again what finishing means exactly but from the top of my head its: taking all 3/4 antibiotics for 1 year after there have been no reactions to the antibiotics anymore + after that finishing it off with rifabutin.

cpn compromises the immune system so it is not unlikely that there are other infections which are causing problems but these infections might clear up if cpn is gone and the immune system is working properly again. this is just 1 possibility. it could also be that other infections are still causing problems even when cpn is gone completely but to my knowledge and understanding of your situation so far you didnt finish the protocol and did not rule out the possibility that your immune system is still compromised and in fact cpn is also still there causing issues on its own.

"Very soon I started the Wheldon antibiotic protocol for Chlamydia pneumoniae, and while I was on the protocol, I saw tremendous improvements to my symptoms and also got rid of the chronic cough I had for a decade. I assumed that was it. But no, the symptoms came back very soon."

i would be interested to know how you can actually differentiate between coxsackie symptoms and cpn symptoms. what you describe seems to be symptoms coming back after you got off the protocol and didnt finish. this could be attributed to an effect of the study you linked but i am suspicious at least bc it seems you didnt finish the protocol.

 

[oncemoreuntothebreach]

I did finish the protocol. After almost four years, I had no reactions to the antibiotics, and the same was true for an extended metronidazole pulse. If I recall correctly, Rifabutin is optional, and a prolonged metronidazole pulse is recommended at the end of the protocol. Extra caution is needed when using Rifabutin; it's not like the other antibiotics in the protocol.

In the quoted text, I'm referring to the syncopes and faintings that I mentioned in the earlier paragraphs of my introductory post, which had nothing to do with CPN.

There is some correlation between my symptoms and the fluctuations in the Coxsackie B3 and B4 neutralizing antibody titers over the last two and a half years. See the attached file for details. Additionally, my symptoms reappeared after a prolonged period of exercise. There are some studies linking exercise with Coxsackie B, and the findings are concerning. There are more indications, but I can't recall them all or have the time to mention them.

The rise and fall of the titers mostly correlate with whether I use astragalus tincture or not. I have used many other supplements, but this one seems to have the most effect on B3. B4, maybe not so much.

Take everything above with a grain of salt, as I may be wrong in some of my observations.

 

[lngnstrng]

I did finish the protocol. After almost four years, I had no reactions to the antibiotics, and the same was true for an extended metronidazole pulse. If I recall correctly, Rifabutin is optional, and a prolonged metronidazole pulse is recommended at the end of the protocol. Extra caution is needed when using Rifabutin; it's not like the other antibiotics in the protocol.

Emerging Stratton Protocol 4/2008:
"For those that have a major side effect on the pyruvate/macrolide alone, I'd continue to treat with the macrolide alone until the side effects are manageable. For those that don't, I'd add doxycycline 100 mg twice a day with 6 grams of pyruvate 1 hour before. Continue the NAC and Ibuprofen.

After two weeks of doxycycline if all went well, I'd add metronidazole 500mg twice a day with 6 grams of pyruvate before that. If a reaction is seen.

To the metronidazole, I'd then pulse it until the reactions were manageable.

If minimal reactions, I'd continue therapy for at least 1 year and then recheck titers. If titers were low, I'd add rifampin or rifabutin (preferably), using the rifamycin with pyruvate taken 1 hour before the rifamycin. If no reactions to this, I'd consider the therapy to be complete.

I would continue to monitor titers every several years. If the titers increased, I'd retreat with 6 months of clarithromycin or roxithromycin plus rifabutin plus pyruvate and ibuprofen. I'd continue the NAC for life."

i wouldnt call it optional. you can leave it out but this will decrease your chances of being cpn free. the guy had a lot of clinical practice so he developped the protocol further over the years. well im not saying cpn is the issue for you let alone comment on the coxsackie part bc i have no clue on that. just saying from my point of view you didnt finish the protocol because also if you do an extended metronidazol pulse without reactions that might mean there is still some cpn left (enough for the infection to rise up again later) and thats why he recommended to finish it off with rifabutin bc it is a stronger abx for cpn than metronidazol.

"For people on the existing CAP who are being switched:

For those on the current Doxycycline, Azithromycin, Metronidazole, and NAC protocol, my thoughts are that they should first switch from Azithromycin 250 MWF to Clarithromycin 500 mg twice a day (or Roxithromycin) and then add pyruvate

Dr. Stratton adds that Levaquin may be used instead of Clarithromycin for a short period (one month) as it has excellent activity for a short period of time. Clarithromycin = higher levels. Levoquin Both when combined with pyruvate theoretically will provide better killing."

do you have an opinion on the clarithromycin part? bc im on azithromycin and that part here never made sense for me bc i couldnt find where that statment comes from that clarithromycin gives "higher levels" which probably means higher abx concentration and hence better killing. i think i asked that before when cpnhelp was still online but i think nobody could explain it.

 

[Judee]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7253499/

@Hip, did you see this?

 

[Hip]

@Hip, did you see this?

Thanks, looks intriguing. Interesting that these antibiotics can reduce coxsackievirus B levels by 10-fold (see Figure 5 of the study). Note that these viral titres are not the same as viral antibody titres that get measured in medical blood tests. Viral titres refer to how many viral particles are present, rather than the level of antibodies.

Some of the antibiotics used (like vancomycin, neomycin and streptomycin) and are ototoxic; but ampicillin is fairly safe. The study give mice 10 mg of these antibiotics daily, which is an equivalent human dose of around 2000 mg. This is within the normal human dosing of ampicillin.

It might be interesting to try ampicillin 2000 mg daily for a month or so. Though that will not do you gut microbiome much good.

 

[oncemoreuntothebreach]

@

lngnstrng​

Using azithromycin alone was more than enough to temporarily relieve my chronic cough for several weeks, so I found it effective. I don't have an opinion on clarithromycin; according to his website davidwheldon.co.uk (which is currently down), he doesn't mention it. He only talks about doxycycline, azithromycin, and metronidazole, aiming to make the treatment protocol as effective, safe, and easy to use as possible.

You can see the antibiotics chart by scrolling down on this page: https://web.archive.org/web/20220821045031/https://davidwheldon.co.uk/ms-treatment1.html.

 

[lngnstrng]

yes i have that saved as a pdf on my computer. the thing with wheldon is that he to my knowledge only applied this protocol on his wife and unlike stratton did not treat hundreds or thousands of patients for cpn with this protocol. hence i consider strattons protocol more advanced and reliable.

wheldon and stratton have both passed away and wheldons wife talked about not putting cpnhelp.org up anymore so i think these website might never come back.

 

[Jyoti]

wheldon and stratton have both passed away and wheldons wife talked about not putting cpnhelp.org up anymore so i think these website might never come back.

I am so grateful to you and @oncemoreuntothebreach for re-posting both of their documents. I was so upset when I discovered that cpnhelp was down and I couldn't find Wheldon's protocol anywhere online. Wonderful to have them again, along with your experiences in following them.

 

[lngnstrng]

I am so grateful to you and @oncemoreuntothebreach for re-posting both of their documents. I was so upset when I discovered that cpnhelp was down and I couldn't find Wheldon's protocol anywhere online. Wonderful to have them again, along with your experiences in following them.

yes its a shame cpnhelp isnt available anymore. it did not attract huge amounts of ppl but it has given many ppl their lives back. without that website i wouldnt have come so far as i am today.

one can use that web.archive website to recover some things but i couldnt manage to access all of the cpnhelp website with it. there is also https://cpnhelplite.org/ which does have the protocols kind of