POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

[heapsreal]

@heapsreal My neurologist has recommended a lumbar puncture - looking for a protein (?) prior to trying a speculative IVIG. I’m wary of this procedure, actually afraid of possible side effects. How about you; have you ever had one?

Lumbar puncture not yet. Ive read grom a few people who have increased intracranial pressure actually felt good for up to a day. If it helps find some answers than im up for it, i guess

 

[Stretched]

Lumbar puncture not yet. Ive read grom a few people who have increased intracranial pressure actually felt good for up to a day. If it helps find some answers than im up for it, i guess

‘Good luck it. It may be a piece of cake. Afterwards, if you remember, I hope you‘ll post what it was like.

 

[heapsreal]

‘Good luck it. It may be a piece of cake. Afterwards, if you remember, I hope you‘ll post what it was like.

I see the neurologist in abit over a week. So not sure yet if im getting a lumbar puncture yet but will keep you informed. First appointment i get an EEG, so see how that goes.

 

[AwakeButAsleep]

no effects at all..

 

[Judee]

tinidazole,
minocycline,
doxycycline.

They help my mood a lot, give me a slight boost in motivation, help my hair and nails grow much faster. (Since I started using them my hair is thicker than it's ever been. I think they are killing something that was using up my nutrients.)

@Andrew recently mentioned viruses doing that but I believe bacteria can too.

If they give me energy though, it's very subtle. But I will gladly take any improvement that helps me to cope with this disease.

Oh, and when I've been on them for a while, I've noticed memory recall gets better.

 

[SleepingGirl]

After a recent hospital visit for sever abdominal pain and running to the bathroom too many times (thought I was having appendicitis), I've been diagnosed with blastocystis hominis and just happened to come across this while digging for CFS supplements. I've been in the big debate on whether I risk messing my guts up more with antibiotics. I've had gut pain most of my life and thought it was mostly due to lactose intolerance or gluten except it's also happening when I eat neither of those, so I just summed it up to be CFS/IBS related up until now.

Anyway I'll likely be taking flagyl for 10 days soon, so if I remember I'll post how I end up feeling on those. Wish me luck that I don't mess something else up in the equivalent exchange that is medication.

 

[eric_gladiator]

I have recently been prescribed azithrimycin by the dentist but in the past I remember having many bowel problems, I am doubtful whether to take it or not as I am afraid of feeling sick or worsening my me, although there are people who this particular antibiotic has given them back their lives

 

[Judee]

I'm on Amoxicillin for dental issues right now. Was having some residual effects from things they gave me in the hospital recently but otherwise, I think the Amox gave me my only 2nd day of remission ever yesterday. Not a complete improvement but I felt pretty good. I'm praying it keeps helping.

Amox is on my allergy list because of a rash but I didn't want to keep taking what they gave me (fluoroquinolone) so switched when I got home.

I have since read some studies that people with Mono can get that rash on Amox or Azith. so wonder if that's why I had that years ago. No rash so far with this cycle of taking it.

 

[Slushiefan]

As an FYI I would say the antibiotics are effective to temporarily reduce all of the symptoms, but no single symptom is completely eliminated, nor is the reduction what I could characterize as a full remission.

 

[Slushiefan]

Please don't encourage people to take fluoroquinolones antibiotics! Those are ruining thousands of lives. People end up in wheelchair because of these dangerous antibiotics. I hope you didnt have any side effect so far, and also know that just because you've taken it before with no side effects, doesn't mean you will always tolerate it. Many people have been hurt and yet they had taken Cipro in the past without having any issue.

Pauline was right here - be careful with antibiotics.

I have stopped Cipro since last year, as I began experiencing side effects such as an allergic response to allergen causing foods (eg tree nuts, peanuts) when I previously had none, and stomach issues such as highly painful acid indigestion and reflux when I previously didn't, and also my IBS eventually began to get much worse causing very painful cramping that would not go away.

I suspect that the antibiotics clear what bacteria they can in the body and digestive tract, and bacteria the antibiotic can't affect grows into the empty spaces that leaves in the gut.

My experimentation also shows that our gut biome very directly also affects our allergies to foods - remove the wrong bacteria and allergies will appear where none were before.

My suspicion then is that antibiotics might be useful to clear bacteria out eg when starting a gluten free diet, but more than that eg long term control just won't work out because bacteria are intended to live in us symbiotically, and our bodies are designed to support that.

Finally, after stopping cipro, things eventually got back to normal for me, but if you completely eliminate some bacterial strains it may become a real health issue for you, depending.

 

[hapl808]

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.

 

[Slushiefan]

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.

If my theory is correct, it is because the Zithro killed off some bacteria pockets, and other bacteria that is not affected by Zithro grew into the opening and took its place, living there happily.

After Zithro, the bacteria that is sensitive to Zithro are now much fewer in number (making up a smaller percentage of the bacterial load that is always present) , so when you take it now it only minimally reduces the overall bacterial load.

 

[hapl808]

If my theory is correct, it is because the Zithro killed off some bacteria pockets, and other bacteria that is not affected by Zithro grew into the opening and took its place, living there happily.

I think that's possible, just no way to tell. Some herbal antibiotics help, some don't. They all seem to have a plateau. Zithro was almost magical the first time I took it. Then could never repeat that, although still got some ME/CFS benefits, but worsened my digestion.

Certainly seems like an area we need more research - antibiotics and the gut in general. My own pet theory is that the overall gut health, whether it's microbiome and/or immune function and vagus and all that, affects everything else in the body from CFS to autoimmune to neurological, etc.

The problem is it's a huge jump between 'these things are connected' and what that means in etiology and treatment.

 

[mrmichaelfreedmen]

I'm on Amoxicillin for dental issues right now. Was having some residual effects from things they gave me in the hospital recently but otherwise, I think the Amox gave me my only 2nd day of remission ever yesterday. Not a complete improvement but I felt pretty good. I'm praying it keeps helping.

Amox is on my allergy list because of a rash but I didn't want to keep taking what they gave me (fluoroquinolone) so switched when I got home.

I have since read some studies that people with Mono can get that rash on Amox or Azith. so wonder if that's why I had that years ago. No rash so far with this cycle of taking it.

fluoroquinolone is dangerous, black box warning across the USA

 

[Judee]

fluoroquinolone is dangerous, black box warning across the USA

I know. I kept trying to talk them into giving me something different. I only took one dose. The next day when she brought it to me I didn't take it again and haven't since. (I just have so many abx on my allergy list.)

When I got back home, I tried the Amox out of desperation. I didn't get a rash like before so now I've had the doctor's office and the pharmacy I normally go to remove it from my file as an allergy. Hopefully that will help in future.

 

[lngnstrng]

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.

i had that very same effect too when i took zithromax for the first time in an unrelated matter. i could not replicate it either when i started to treat my cfs with antibiotics after that 2 years later.

im on zithromax doxycycline and metronidazol for almost 2 years now and improving significantly step by step althought its a very tough treatment bc when you have a chronic infection of that scope and these bacteria are finally dying its creating really tough "side effects". i expect to be cured in a couple of years.

 

[hapl808]

im on zithromax doxycycline and metronidazol for almost 2 years now and improving significantly step by step althought its a very tough treatment bc when you have a chronic infection of that scope and these bacteria are finally dying its creating really tough "side effects". i expect to be cured in a couple of years.

I think it's also hard to separate out the side effects of the antibiotics and the side effects of any bacteria dying. I'm not really sure we have any idea what's going on. I took Zithro and Doxy for a couple years (not usually at the same time) and had some significant improvements, but unfortunately they didn't last for me and then I slid back into more severe after a couple injuries and bad allergies.

What dosages and types are you taking? Weirdly it seemed like doxycycline monohydrate worked better for me than doxycycline hyclate, although not sure why that would be.

 

[lngnstrng]

I think it's also hard to separate out the side effects of the antibiotics and the side effects of any bacteria dying. I'm not really sure we have any idea what's going on. I took Zithro and Doxy for a couple years (not usually at the same time) and had some significant improvements, but unfortunately they didn't last for me and then I slid back into more severe after a couple injuries and bad allergies.

What dosages and types are you taking? Weirdly it seemed like doxycycline monohydrate worked better for me than doxycycline hyclate, although not sure why that would be.

well for me personally i dont think its hard to sort out side effects e.g. i pulse metronidazol for 3-5 days. after im finished it will take approx. 44 hours for metronidazol to be gone out of my system which is around 2 days. yet i get profound "side effects" like clock work every time after i pulsed with metronidazol for approximately 3 weeks to a couple of months (if i overdid it).

i dont know about your diagnose but taking only doxy and zithro will most like not get rid of a cpn infection as the bacteria simply shift into the cryptic form. when you stop the treatment they will shift again into the active form and symptoms come back within a few months id guess. i talked to someone before though who told me he had gotten rid of his cpn without metronidazol but personally i wouldnt try the treatment without this.

i take doxy 200mg/day
azi 500mg/ every second day except when i finished my metro pulse then i usually go to 1-0-0-1 day pattern
metronidazol 3x400mg for 3-5 days. i still cant take more than 3 days for now bc the bacterial load is very high and the die off effects are too heavy for me. even with only 3 days i take plenty of ibuprofen after the pulse.
also i take 4x600mg NAC which is like an antibiotic with cpn destryoing the elementary form.

ive had hyclate and monohydrate and havent noticed any difference treatment wise except one might make me more nauseous.

 

[hapl808]

i dont know about your diagnose but taking only doxy and zithro will most like not get rid of a cpn infection as the bacteria simply shift into the cryptic form. when you stop the treatment they will shift again into the active form and symptoms come back within a few months id guess. i talked to someone before though who told me he had gotten rid of his cpn without metronidazol but personally i wouldnt try the treatment without this.

I've never had what I would consider a definitive diagnosis, although different practitioners have their own ways of interpreting labs or clinical symptoms. How did you get a diagnosis?

Interesting pulsing strategy. Is that based on some protocol or did you develop it yourself?

What are the die off effects? For me, headaches that lead to less brain fog 'feels' like die off. Other symptoms that may relate more to GI, connective tissue, etc - seem harder to categorize.

 

[lngnstrng]

I've never had what I would consider a definitive diagnosis, although different practitioners have their own ways of interpreting labs or clinical symptoms. How did you get a diagnosis?

Interesting pulsing strategy. Is that based on some protocol or did you develop it yourself?

What are the die off effects? For me, headaches that lead to less brain fog 'feels' like die off. Other symptoms that may relate more to GI, connective tissue, etc - seem harder to categorize.

its just wheldon or stratton so no rocket science. i just follow their protocols. unfortunately cpnhelp.org is down

well i kind of stumbled into this. i was misdiagnosed for lyme. doctor wanted to give me herbs (nothing like buhner though). i asked for abx and they were minocyclin, zithro and tinidazol so kind of similar to what im taking now. i had the positive effects but like many others i stopped treatment after 3 months bc i didnt know better and my doctor was not of any help. but well that got me hooked bc the positive effects were there no shadow of a doubt. then one day i discovered cpnhelp.org. did the nac test which was positive (basicially taking NAC for a couple of days and seeing what happens which caused me heavy headaches etc which usually i didnt have to that degree) and then i demanded the antibiotics from the protocol from the doctor which he gave to me.

im not saying i have cpn though. i think so but all i know is the abx im taking work. i could have mycoplasma pneumoniae on top or something else i dont know. all i know is the abx work and after almost 2 years im optimistic i will get rid of this finally which is quite a long time since 2015 when i got this.

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

things like that