Fluoroquinolone-Associated Disability: Another starting point for ME/CFS?

[TJ_Fitz]

Two years ago, an ENT prescribed ciprofloxacin for me to treat a persistent sinus infection. When I got the prescription and looked at the bottle, I was certain I had taken it before in my childhood or youth. I proceeded with the antibiotics, but soon felt terrible depression, cognitive impairment, incredible fatigue, and deep muscle and joint aches like I had never experienced before. My right shoulder also froze up during the therapy.

After I completed the course, and my brain fog eased up, I started reading up on the drug and learned about fluoroquinolone toxicity (FQT), now known as fluoroquinolone-associated disability (FQAD). This class of antibiotic damages mitochondrial DNA. Some people are crippled for life after only a few doses! I had to wonder if that first round of Cipro was what initiated my ME and made me so susceptible to mold/biotoxin illness.

I haven't found any references to fluoroquinolones anywhere on the forum, so here is some information for those interested.

Fluoroquinolone-Associated Disability and Other Fluoroquinolone-Associated Serious Adverse Events: Unexpected Toxicities Have Emerged in Recent Years - PubMed

This study describes cases of individuals who report adverse events following consumption of the most commonly prescribed fluoroquinolone (FQ) antibiotics: ciprofloxacin, levofloxacin, or moxifloxacin. Fluoroquinolone (FQ) antibiotics are some of the most widely prescribed antibiotics in the...

pubmed.ncbi.nlm.nih.gov

Treatment of the Fluoroquinolone-Associated Disability: The Pathobiochemical Implications - PMC

Long-term fluoroquinolone-associated disability (FQAD) after fluoroquinolone (FQ) antibiotic therapy appears in recent years as a significant medical and social problem, because patients suffer for many years after prescribed antimicrobial FQ ...

www.ncbi.nlm.nih.gov

Perhaps this will be useful to some here.

Ps: If you start hunting for more info about FQT/FQAD, you will inevitably come across the "Floxie Hope" website. When you do, just keep moving, because it's garbage.

 

[Tammy7]

I have it in my medical file never to give me Fluoroquinolones. I said I was allergic to them.

 

[TJ_Fitz]

I have it in my medical file never to give me Fluoroquinolones. I said I was allergic to them.

That's what I say now.

 

[Ken Lassesen]

I have evolved to viewing ME/CFS as a stable microbiome dysfunction and a tool has been built to help with it. https://microbiomeprescription.com/
See this for what if modifies in the gut -- a lot of different bacteria

MicrobiomePrescription : fluoroquinolone (antibiotic)s

 

[jaminhealth]

Maybe 20 yrs agp and before she WOKE up about pharma drugs, my daughter tooks some abx drugs and with the Cipro she took, we believe she ended up with 2 damaged feet, one worse than the other. She's now 60 and won't touch a pharma drug now....but lives with the horrid damage.

 

[buckey]

I often wonder if the tetracycline I took as a teenager caused my me/cfs.
I took huge bottles of tetracycline for acne for aprox. 1.5 yrs which must be a lot considering you can't get many abx for more than 2 weeks max.
Tetra never did take my acne away. I took my shirt off and layed in the sun for 1 week... my acne went away.
When I told the Dr. The abx were not working, he just kept saying "keep taking them"
Yeah ,sure makes shareholders big profits🤪

 

[Ken Lassesen]

Conceptually, anything that alters the microbiome (including probiotics) have a risk of shifting the microbiome into a dysfunctional state where thing can become stabilized.
My model is that ME/CFS is a mainly a stable dysfunctional microbiome.

 

[TJ_Fitz]

My model is that ME/CFS is a mainly a stable dysfunctional microbiome.

That's one possible etiology. Clearly there are others, though: dybiosis doesn't cause spinal cord tethering, for example, and it would be quite a stretch to attribute post-viral illness or CIRS to bad gut bugs.

 

[TJ_Fitz]

Maybe 20 yrs agp and before she WOKE up about pharma drugs, my daughter tooks some abx drugs and with the Cipro she took, we believe she ended up with 2 damaged feet, one worse than the other. She's now 60 and won't touch a pharma drug now....but lives with the horrid damage.

I think it's best to look at medications on a case by case basis. Cipro was a horrible drug for me, and it didn't even clear up the sinus infection it was intended to treat. On the other hand, I have bipolar 2 disorder and Lamictal and, to a lesser extent, Zoloft, have been minor miracles for me. It's nearly impossible to pace myself during a hypomanic episode, and these drugs help me stay grounded and calm enough to slow down and listen to my body.

You might also consider the countless lives that have been saved by antibiotics over the past century. Yes, they mess up your microbiome, but that's far preferable to dying of sepsis or tetanus.

 

[Ken Lassesen]

That's one possible etiology. Clearly there are others, though: dybiosis doesn't cause spinal cord tethering, for example, and it would be quite a stretch to attribute post-viral illness or CIRS to bad gut bugs.

The microbiome produces over 6000 different metabolites -- dysbiosis means over and under production of the these metabolites which will cascade into cells in the body behaving differently.
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[TJ_Fitz]

The microbiome produces over 6000 different metabolites -- dysbiosis means over and under production of the these metabolites which will cascade into cells in the body behaving differently.

I'm just not going to read all that. Sorry! I don't have the brain power or training to make sense of more than abstracts and conclusions / discussions in scientific papers, much less to evaluate the methods and statistics to determine if the study is reliable.

The only ways I know of to improve the microbiome are with probiotics, fecal transplant, and dietary changes. If probiotics were the cure, I doubt that this forum would exist. Last I checked, fecal transplants are only allowed in the USA to a very small population of patients with a certain diagnosis. I suspect that most of us here have tried a variety of dietary interventions without being cured.

If you can offer something new and actionable, I'm all ears!

 

[Ken Lassesen]

I'm just not going to read all that. Sorry! I don't have the brain power or training to make sense of more than abstracts and conclusions / discussions in scientific papers, much less to evaluate the methods and statistics to determine if the study is reliable.

The only ways I know of to improve the microbiome are with probiotics, fecal transplant, and dietary changes. If probiotics were the cure, I doubt that this forum would exist. Last I checked, fecal transplants are only allowed in the USA to a very small population of patients with a certain diagnosis. I suspect that most of us here have tried a variety of dietary interventions without being cured.

If you can offer something new and actionable, I'm all ears!

You need to know HOW it is shifted (everyone has different shifts). You need to get detail information and work with it. Some examples are here: Analysis Posts on Long COVID and ME/CFS
You also did not mention ANTIBIOTICS --- not random one, but appropriate for the objectively measured microbiome shift.
See Video Presentation of Dr. Jadin’s Current Protocol for ME/CFS, Q-Fever, Chronic Lyme and related conditions over 25 years of successful treatment of ME/CFS. Her approach worked for me.
Last item, the probiotic that seems to be most effective for assisting the treatment of ME/CFS is MUTAFLOR (E.Coli Nissle 1917) which is not available for sale in the US without prescription.

 

[TJ_Fitz]

You need to know HOW it is shifted (everyone has different shifts). You need to get detail information and work with it. Some examples are here: Analysis Posts on Long COVID and ME/CFS
You also did not mention ANTIBIOTICS --- not random one, but appropriate for the objectively measured microbiome shift.
See Video Presentation of Dr. Jadin’s Current Protocol for ME/CFS, Q-Fever, Chronic Lyme and related conditions over 25 years of successful treatment of ME/CFS. Her approach worked for me.
Last item, the probiotic that seems to be most effective for assisting the treatment of ME/CFS is MUTAFLOR (E.Coli Nissle 1917) which is not available for sale in the US without prescription.

Thank you. Patients can possibly do something with that. Personally, I'm not interested in intentionally putting any kind of gram-negative (i.e. endotoxic) bacteria into my body because of my history of biotoxin illness, but others with different etiologies may find that helpful.

 

[glenn_chan]

Traumatic brain injury might also be another possible trigger for chronic illness- I'm not sure if that's been discussed before. It does overlap with Long COVID symptoms in terms of light and sound sensitivity (can't tolerate certain visual or auditory situations) and the symptoms of meningitis.

 

[buckey]

1.5 yrs of tetracycline ,I'm pretty sure was my straw that broke my me/cfs back but we'll see what comes out in "the wash".
It's funny, the guy that invented the synthetic gut flora replacement....has patent for it
it can only be used if a person has c diff.
It could help so many others