POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

[hapl808]

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.

 

[lngnstrng]

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.

 

[lngnstrng]

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]

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]

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?

 

[lngnstrng]

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.

 

[lngnstrng]

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]

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.

 

[Blazer95]

The first time I took Zithro about 10 years after ME/CFS symptoms started, I had an almost total remission for a few days. After that, antibiotics gave me some moderate temporary help, but never could replicate that first experience.

Old Post but this is exactly my experience with Mino and doxy. Each one worked for 3 weeks and then stopped entirely.

We have to be so critical to Note however that macrolides (zithro, clari,) and tetracyclines (doxy,Mino) both are anti inflammatory and to a Low Grade extent immune modulatory.

I am exploring the "chronic lyme World" myself and i wouldnt disagree with the chronic infectious theory in general, but we should remain critical and See If we benefit because of anti-bacterial reasons or anti-inflammatory reasons. To this day i am still unsure wich one it is.

Greetings

 

[lngnstrng]

Old Post but this is exactly my experience with Mino and doxy. Each one worked for 3 weeks and then stopped entirely.

We have to be so critical to Note however that macrolides (zithro, clari,) and tetracyclines (doxy,Mino) both are anti inflammatory and to a Low Grade extent immune modulatory.

I am exploring the "chronic lyme World" myself and i wouldnt disagree with the chronic infectious theory in general, but we should remain critical and See If we benefit because of anti-bacterial reasons or anti-inflammatory reasons. To this day i am still unsure wich one it is.

yes it is absolutely crucial to always remain critical. even im on antibiotics for over 2 years now and the curve of improvement is pointing north i still need to remain critical and adapt to this disease.

the thing with antibiotics is if you for example have a chronic infection with chlamydia pneumoniae, which i most likely have, you will see results and improvement most likely only after months or a year. ive had remarkable resuslts aswell the first time i took azithromycin and doxycyclin and thought ok this is not gonna take long for me to cure but these good results usually appear in the beginning and ive heard others report the same effect. the good results subsided again for me and it took around 6months+ for me to finally start improvement again. actually at the beginning of the therapy i was way worse than without antibiotics.

also with cfs the bacterial load of chlamydia pneumoniae will usually be high/very high.

this really is the weirdest disease ever. after around 2 years on the antibiotics i needed to reduce azithromycin and doxycycline again because it was giving me major issues again.

 

[Blazer95]

Well If it works for you thats of course the biggest indicator. There has been a chronic bartonellosis patient from healingwell that also got better over extensive Treatments.

Staying critical doesn't necessarily agreeing with the CDC one Size fits all "there are no bacterial infections that are chronic" *insert donkey face Here*. Haha

Glad for you, you are improving man.

My chronic infectious doctor wants me to try rifampin because i got benefit From doxy and Mino i am really afraid of rifampin though. Did you use it? He recommended Mino 200mg + rifampin 600mg

 

[lngnstrng]

Well If it works for you thats of course the biggest indicator. There has been a chronic bartonellosis patient from healingwell that also got better over extensive Treatments.

Staying critical doesn't necessarily agreeing with the CDC one Size fits all "there are no bacterial infections that are chronic" *insert donkey face Here*. Haha

Glad for you, you are improving man.

My chronic infectious doctor wants me to try rifampin because i got benefit From doxy and Mino i am really afraid of rifampin though. Did you use it? He recommended Mino 200mg + rifampin 600mg

C. pneumoniae can cause chronic infection. Some experts think that chronic C. pneumoniae infection might contribute to chronic conditions, such as asthma, arthritis, and atherosclerosis (plaque buildup in arteries).

https://www.cdc.gov/pneumonia/atypical/cpneumoniae/about/treatment.html

no rifampin for me. my treatment plan says rather rifabutin to finish off the treatment. but rifampin was also a possibility maybe in combination with another one (at least for cpn). there are treatment plans by wheldon and stratton i follow.

whats your diagnosis so far? why does he want to add rifampin?

 

[Blazer95]

I Had a Test came Back indicative of bartonellosis

 

[lngnstrng]

I Had a Test came Back indicative of bartonellosis

ok i basically have no knowledge on this bacteria. you need to dig by yourself. be critical with doctors when you can is my general advise.

 

[Blazer95]

I will Not blindly follow it but i am considering it trying it Out and See If it does Work. If Not i will Stop...

 

[almost]

I think you need to add a question: "Did antibiotics cause you long term damage?"

I agree, and would vote yes.

A year ago I was getting close to remission. After two courses of Doxycycline in the last 9 months, I have taken two large steps backward, each step after a course of the Doxy. Took the second round to make the connection.

Most likely wreaked havoc on my microbiome, but for whatever reason, that seems to be the cause. No more Doxy for me.

 

[Blazer95]

I agree, and would vote yes.

A year ago I was getting close to remission. After two courses of Doxycycline in the last 9 months, I have taken two large steps backward, each step after a course of the Doxy. Took the second round to make the connection.

Most likely wreaked havoc on my microbiome, but for whatever reason, that seems to be the cause. No more Doxy for me.

This Shows how variable this disease is.

There will Most likely never be a one-size-fits-all for ME/CFS. As frustrating as It is, we will Most likely have to treat every case seperately.

 

[Wishful]

the good results subsided again for me and it took around 6months+ for me to finally start improvement again. actually at the beginning of the therapy i was way worse than without antibiotics.

One problem with treatments that take months to show an improvement, is that you can't be sure that the treatment was responsible. My ME goes up and down at times even without treatments or significant changes in my diet or lifestyle. Without repeating the experiment several times and getting the same result, you don't know for sure if it was that treatment or some other factor. I'm not saying that this treatment didn't work for you, but rather that I wouldn't consider it strong evidence that antibiotics are a likely treatment for PWME.

 

[lngnstrng]

One problem with treatments that take months to show an improvement, is that you can't be sure that the treatment was responsible. My ME goes up and down at times even without treatments or significant changes in my diet or lifestyle. Without repeating the experiment several times and getting the same result, you don't know for sure if it was that treatment or some other factor. I'm not saying that this treatment didn't work for you, but rather that I wouldn't consider it strong evidence that antibiotics are a likely treatment for PWME.

well it depends on the situation. CFS is just a syndrom and even within one subgroup of it the sypmtoms and general state of the diseasse can vary greatly i suspect. my disease did not flactuate like yours and hence i was pretty positive that the antibiotics caused the difference for me personally. but like ive said it depends on the person. + im always careful to overthinnk my own conclusions and try to never let them be ultimate conclusions and always stay careful and open minded to my approach.

well after 2+ years on the antibiotics im still sticking with this approach and improving further although it is a bumpy ride at times.

 

[oncemoreuntothebreach]

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