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.

 

[NameHere]

So again, there are no high quality studies right now, and that is why we are all so frustrated.

Are you in a medical research field? Have you thought about getting involved in studying CFS/ME?

Who is the pioneer in this field? What about a collaboration?

 

[datadragon]

Azithromycin accelerated NLRP3 transcript decay https://respiratory-research.biomedcentral.com/counter/pdf/10.1186/s12931-017-0608-8.pdf

NLRP3 activation would naturally have led to increase of ER Stress, WASF3 levels and Exercise Intolerance/PEM. NLRP3 increases IL-1b/IL-6, INF-y which leads to that WASF3 increase. Heavy exercise, high glucose and fructose and infection all can also increase INF-y increasing WASF3 levels. ER Stress also increases WASF3 levels. Remember that I found and mentioned how infections, high glucose and fructose, heavy exercise and IFN-y which can increase from inflammation all happen to converge to increase WASF3 levels which is currently shown to cause exercise intolerance/fatigue from research at the NIH. An exercise test indicated the high WASF3 mice produced higher blood lactate levels – which have been found in ME/CFS – and lower glycogen levels. Blocking WASF3 allowed mitochondria to produce energy at normal levels. Glucose deprivation strongly inhibited IFN-gamma (IFN-y) gene expression for example. IFN-y increases expression of GRP78, which is the same GRP78 that increases WASF3 levels. We were discussing in this thread.
https://forums.phoenixrising.me/thr...c-fatigue-syndrome.90582/page-13#post-2469256

The activation of the NLRP3 inflammasome, results in the processing and secretion of active Interleukin 1 (IL-1b) and IL-18. IL-1β induces IL-6 and a Th-17 immune response, whereas IL-18 induces IFN gamma (IFNγ) production by Th-1 lymphocytes An IL-1/IL-6 signature increases neutrophils and C-reactive protein (CRP), whereas an IL-18/IFN-y signature is characterized by hyperferritinemia (excess of an iron storage protein called ferretin in the blood) and cytopenia. https://www.pnas.org/doi/10.1073/pnas.2009017117

There are additional effects of NLRP3 activation such as the lowering of nutrients such as Zinc availability that can lead to many of the other reported downsteam effects In ME/CFS.
Zinc shows up here for example- In periods of intense muscular activity, zinc is also needed. The ability of the TnT variable N-terminal region to interact through a zinc bridge with the enzyme catalyzing the deamination of AMP to maintain a high energy charge and supply myosin ATPase with ATP could be at the base of a rapid and fine-tuned adaptation to the changes in contractile demands. the zinc-binding protein HPRG we have shown to be candidate to provide the zinc ions to stabilize the AMPD1 native conformation. Furthermore, a clear correlation between the muscle HPRG content and the level of AMPD activity was obtained from the immunological analyses of human skeletal muscle biopsies from patients with AMPD deficiency. AMPD is a zinc enzyme (adenosine monophosphate deaminase) And genetic cause of deficiency can cause ME/CFS.
https://forums.phoenixrising.me/thr...aminase-deficiency-type-1.91709/#post-2455574

 

[joshualevy]

Are you in a medical research field? Have you thought about getting involved in studying CFS/ME?

I'm not a medical researcher. I do another kind of research.
I'm not going to go into all the reasons not to do CFS/ME research here. That is a discussion for a different thread.

 

[JES]

Antibiotics were probably one of the first drugs trialed by the ME/CFS community back in the day when it was believed long course antibiotics would cure Lyme disease. In my country it was incredibly easy to get antibiotics prescribed for anything compared to today. They never did much for any of my symptoms, but I noticed I started to feel constant flu-like symptoms after being 3-4 weeks on them, probably due to microbiome getting impacted negatively.