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POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

Have Antibiotics Helped Your ME/CFS Symptoms?

  • Yes (helped ME/CFS)

    Votes: 30 38.0%
  • No (didn't help ME/CFS)

    Votes: 41 51.9%
  • Helped symptoms unrelated to ME/CFS

    Votes: 12 15.2%

  • Total voters
    79

hapl808

Senior Member
Messages
2,010
die off effects:
massive headaches sometimes
feeling hot in my head but no fever (maybe inflammation but i dont know)
pain in my ankles
sometimes a pain runs through my entire leg
confusion/even more brainfog than normally

Thanks for that info - wasn't familiar with cpnhelp. It's tough, because I've done all the various lyme stuff - antibiotics, Buhner, Zhang, etc. I also saw Zhang in person and received specific herbs to combine with antibiotics I was taking. It gave me a few years of better health 10 years ago, but just hit a plateau and wasn't able to find herbs or antibiotics that helped enough. I also found antibiotics tended to screw up my stomach even more over time, no matter how careful I was with probiotics and prebiotics and such.

I'll have to look at the NAC test. I take NAC pretty regularly as it helps with some of my headaches and postnasal drip and such. I usually take lower amount than what you mentioned (have only taken 3x600mg at my highest, but more usual is 600mg per day).

Glad your antibiotics are helping - that's the most important thing. I did that for a couple years and it definitely helped, but stopped when I couldn't find a schedule or dosage that continued to help, and the GI problems were getting worse.

I still often rotate between Buhner, Zhang herbs like Allicin or Coptis, other things like oregano oil, and occasionally some antibiotics (but haven't done that in a few years now).

The Remission Biome people definitely seem to focus on antibiotics. It's just difficult when I've seen a million dosing protocols with complex theories on biofilms and spirochetes and persisters and binders and such, but haven't met too many people who have achieved durable remissions using that. Same issue I had trying to pursue CIRS with a practitioner.
 
Messages
18
Thanks for that info - wasn't familiar with cpnhelp. It's tough, because I've done all the various lyme stuff - antibiotics, Buhner, Zhang, etc. I also saw Zhang in person and received specific herbs to combine with antibiotics I was taking. It gave me a few years of better health 10 years ago, but just hit a plateau and wasn't able to find herbs or antibiotics that helped enough. I also found antibiotics tended to screw up my stomach even more over time, no matter how careful I was with probiotics and prebiotics and such.

I'll have to look at the NAC test. I take NAC pretty regularly as it helps with some of my headaches and postnasal drip and such. I usually take lower amount than what you mentioned (have only taken 3x600mg at my highest, but more usual is 600mg per day).

Glad your antibiotics are helping - that's the most important thing. I did that for a couple years and it definitely helped, but stopped when I couldn't find a schedule or dosage that continued to help, and the GI problems were getting worse.

I still often rotate between Buhner, Zhang herbs like Allicin or Coptis, other things like oregano oil, and occasionally some antibiotics (but haven't done that in a few years now).

The Remission Biome people definitely seem to focus on antibiotics. It's just difficult when I've seen a million dosing protocols with complex theories on biofilms and spirochetes and persisters and binders and such, but haven't met too many people who have achieved durable remissions using that. Same issue I had trying to pursue CIRS with a practitioner.

i take 15-30g of inulin as a prebiotic per day and havent had any issues within almost 2 years. i also take 1-2 capsules of probiotic 10 25 billion from now. but i think the prebiotic is more important.

there comes also a long list with other supplements with the protocol im on.

this is a very versetile bacteria which can manifest in a lot of different disease outcomes. see handbook.

if i were you id probably try the protocol with doxy azi nac and finally metronidazol to see if metronidazol makes a difference.
 

Attachments

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  • The Chlamydia Pneumoniae Handbook.pdf
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Messages
18
i do have another theory with cpn and why viral infections might play a role in some ppl. cpn can cause a shift of the immune system towards TH2 which is an extracellular response because cpn is producing molecules to cause this shift. cpn is an intracellular bacteria. hence its not in its interest that the body has a good TH1 response focussing on intracellular pathogens. virsuses are also intracellular. hence it is just logical that with a cpn infection viruses might also become a problem. they might actually cause some real problems and treatment might have an effect but it is not treating the root problem.

not saying that this is a typical situation with ppl who have EBV herpes CMV e.g. but i think it is a possibility.

also this is just my theory and i have no medical background so it might be total bullshit lol.
 

hapl808

Senior Member
Messages
2,010
also this is just my theory and i have no medical background so it might be total bullshit lol.

That's pretty much my benchmark for trusting people. Anyone who is positive that their theory is correct is not trustworthy. Anyone who realizes there is much guesswork and little validation is trustworthy. That includes (especially) doctors. :)

i take 15-30g of inulin as a prebiotic per day and havent had any issues within almost 2 years. i also take 1-2 capsules of probiotic 10 25 billion from now. but i think the prebiotic is more important.

I'll take a look at the PDFs. I can't remember if I've used inulin on its own. I've tried various prebiotic things from potato starch to raw bananas to pectin and various combination formulas. But high dosage inulin sounds like it specifically has benefits for some people. The JarroDophilus has some inulin in it with some good probiotic strains, but it's a low dose. Align makes one with higher dose inulin - thought I tried that but don't see it in my history. Funny, also an exact Amazon branded knockoff of Align - same coagulans and inulin combination.

Does the inulin also help with any nausea or stomach issues caused by the antibiotic dosage?
 

Judee

Psalm 46:1-3
Messages
4,405
Location
Great Lakes
Weirdly it seemed like doxycycline monohydrate worked better for me than doxycycline hyclate, although not sure why that would be.
I've heard that before too. I can't remember if there was a difference for me (or my Mom when she was taking them).
all i know is the abx work and after almost 2 years im optimistic
So what was your level of functioning before you started this and what are you able to do now?
 
Messages
18
Does the inulin also help with any nausea or stomach issues caused by the antibiotic dosage?
the antibiotics do not cause me much side effects. doxycyclin can cause some nausea when my stomach is too empty. metronidazol causes some side effects for me. it can make me feel depressed and nauseaous sometimes. paradoxically i think it gives me less side effects on an empty stomach so i always try to take it in between meals. i dont know if the inulin helps with the side effects.
 
Messages
18
I've heard that before too. I can't remember if there was a difference for me (or my Mom when she was taking them).

So what was your level of functioning before you started this and what are you able to do now?
thats a good question. i just had way more pain overall before i started for example. i couldnt go to the gym. probably also bc it was not only the pain that stopped me from going but also i didnt have the energy. now i can go 3 times per week. before i started i could hardly cook a meal bc standing for 20 minutes at the stove would cause me awful backpain. now the backpain is gone when i do this.

im far from being healthy but just a few months ago i was frustrated bc i had been on the antibiotics for a long time already and they did their job yet the results have not been so gigantic. but things started to improve more with time. it is a very long process and changes are subtle when you only compare day to day or week to week.
 

MaximilianKohler

Senior Member
Messages
118
Needs an option for "temporarily". Antibiotics can have the effect of making you dependent on them to do the job of the microbes they killed off via collateral damage.