Azithromycin in Chronic Fatigue Syndrome (CFS), an analysis of clinical data

[Lovalab]

Could this really be my answer?

This is going to be a brief summary as my mental fortitude isnt high right now. I was diagnosed with CFS in 2010, i think (can’t remember anymore). I always believed it was Lyme disease but multiple tests (at least 6) came back negative, until i read about the Igenex test. I begged for it and finally paid myself for it. I was positive for Lyme and Babesiosis. Surprise! Surprise!
I was sickier than ive ever been during treatment but i got back to about 70-80%. Mostly because I was so out of condition activity and stamina wise. I was treated with multiple medications including Azithromycin. That was fall of 2023 and winter 2024. I was able to walk our dog 1-2 miles a day, all summer, i could go to family gatherings again with no pem at all. Then this past winter the fatigue, malaise and poor brain function slowly crept back in.

Im not able to read through this whole thread to investigate whats been said but i will in the next week. Im going to take the Igenix test again but now im going to ask for a trial of Azithromycin and biofilm defense!

 

[Artemisia]

Could this really be my answer?

This is going to be a brief summary as my mental fortitude isnt high right now. I was diagnosed with CFS in 2010, i think (can’t remember anymore). I always believed it was Lyme disease but multiple tests (at least 6) came back negative, until i read about the Igenex test. I begged for it and finally paid myself for it. I was positive for Lyme and Babesiosis. Surprise! Surprise!
I was sickier than ive ever been during treatment but i got back to about 70-80%. Mostly because I was so out of condition activity and stamina wise. I was treated with multiple medications including Azithromycin. That was fall of 2023 and winter 2024. I was able to walk our dog 1-2 miles a day, all summer, i could go to family gatherings again with no pem at all. Then this past winter the fatigue, malaise and poor brain function slowly crept back in.

Im not able to read through this whole thread to investigate whats been said but i will in the next week. Im going to take the Igenix test again but now im going to ask for a trial of Azithromycin and biofilm defense!

I have seen several people with ME say they got better, usually temporarily, while taking antibiotics. I recently took two weeks of erythromycin and had a decrease in post-exertional malaise and in the pathological constant hunger I have experienced for years. But it also caused some new symptoms. Anyway, I stopped it after 2 weeks. I get afraid messing around with the gut biome too much with antibiotics or supplements.

I wish I knew what to do. I have caused permanent damage taking various substances in the past so I'm much more cautious now.

 

[Artemisia]

Both @Artemisia and @cfs since 1998 think my argument is circular. I think it is reality based, not circular, but lets discuss this issue.

Okay I understand. Thanks for sticking around and explaining this thing from the perspective of someone working in research. I do wish things were done differently but I don't think anything's going to change in my lifetime really.

 

[hapl808]

I avoided antibiotics for many years for all the negative effects, but about 10 years after having MECFS type symptoms, I had to take Zithro for a respiratory infection. I had an almost complete remission of my MECFS symptoms for one week - my muscles were stronger, going up stairs wasn't difficult anymore, my cognitive issues disappeared. Unfortunately, after I finished the Zithro, symptoms creeped back in.

My physician was open to a longer trial - which gave some benefits, but nothing nearly so dramatic. Eventually I stopped as the GI side effects were frustrating.

In 25 years of being sick, that is the only time I had a dramatic improvement, even if it didn't last long.

I didn't read most of the thread, as it seems to be navel gazing on the scientific field, which I just don't have the energy or interest. Science and medicine will not help me, because if someone discovered a cure today, by the time it was validated and SoC, I would be dead.

Scientific perfection doesn't involve a bunch of sick and desperate people on an anonymous web forum. We're here because society threw us out like trash. Research isn't coming not because of prevalence estimates, but because they entrenched the belief that we're mentally ill or malingerers, not suffering from an actual physical illness. But even for things like MS which get a thousand times the sympathy and research, their ability to treat it isn't impressive.

Anyways, that's it for me.

 

[Artemisia]

My physician was open to a longer trial - which gave some benefits, but nothing nearly so dramatic. Eventually I stopped as the GI side effects were frustrating.

In 25 years of being sick, that is the only time I had a dramatic improvement, even if it didn't last long.

sorry to quote you if you don't want to talk on this thread anymore--if so, feel free to ignore this, but--

have you considered trying antibiotics again?

 

[hapl808]

have you considered trying antibiotics again?

Yep. My remission experience was around 2010. Tried a few more courses (weeks or months) of both Zithro and Doxy in 2011 and 2012 I think. Minor benefits, but over time they dissipated.

Had a major decline around 2014-2015, then an even worse one in 2017. I think I revisited Doxy and maybe one other antibiotic in 2019 or so, but saw no benefits.

Have considered trying it again, but I also suffer from significant daily reflux now, so I'm not sure how that might affect it. I'd lean toward either low-dose Doxy or maybe Zithro again.

At this point I'm just trying random stuff, but usually it makes no difference, or makes no difference and has troubling side effects.