Ciprofloxacin again - a never ending story

[Martin aka paused||M.E.]

So as some of you might know, I took Ciprofloxacin in December 2015 and after eight days my ME started to worsen.

I was still mild, but suffered from brutal pain and my POTS started. I had ant running in all extremes and sometimes paralysis, heart rate problems, blurred vision and EXTREME muscle pain (11/10) and was very fatigued. It got better until summer and then after one week of diarrhea it all came back.

Due to a floxed friend who has still reservoirs of Ciprofloxacin after almost ten years in her cells I decided to do a test.

Mind you, the results are concerning.

Ciprofloxacin enters cells and destroys mtDNA. Now I ask myself of this could also be a driving factor not only for my worsening but also for me severity that keeps me in bed.

Your thoughts are welcome and appreciated!

https://pubmed.ncbi.nlm.nih.gov/30169847/

We report here that both known type II topoisomerases Top2α and Top2β are present in mammalian mitochondria, with especially Top2β regulating the supercoiling state of mtDNA. Loss of Top2β or its inhibition by ciprofloxacin results in accumulation of positively supercoiled mtDNA, followed by cessation of mitochondrial transcription and replication initiation, causing depletion of mtDNA copy number. These mitochondrial effects block both cell proliferation and differentiation, possibly explaining some of the side effects associated with fluoroquinolone antibiotics. Our results show for the first time the importance of topology for maintenance of mtDNA homeostasis and provide novel insight into the mitochondrial effects of fluoroquinolones.

 

[Irat]

So as some of you might know, I took Ciprofloxacin in December 2015 and after eight days my ME started to worsen.

I was still mild, but suffered from brutal pain and my POTS started. I had ant running in all extremes and sometimes paralysis, heart rate problems, blurred vision and EXTREME muscle pain (11/10) and was very fatigued. It got better until summer and then after one week of diarrhea it all came back.

Due to a floxed friend who has still reservoirs of Ciprofloxacin after almost ten years in her cells I decided to do a test.

Mind you, the results are concerning.

Ciprofloxacin enters cells and destroys mtDNA. Now I ask myself of this could also be a driving factor not only for my worsening but also for me severity that keeps me in bed.

Your thoughts are welcome and appreciated!
View attachment 44835
https://pubmed.ncbi.nlm.nih.gov/30169847/

Oh dear,why did you take cipro ? I think it could contribute sure,.also many floxies did experience only symptoms many months after stopping,but if your were fully floxed your body would have broken down far worse and rapidly and in different ways I think.like tendon injuries and severe neurological,mental issues.like a bomb goes up in your body with acute neurotoxicity and would not have passed in a few months. . Did not know cipro is measurable .it's crazy

 

[Martin aka paused||M.E.]

but if your were fully floxed your body would have broken down far worse and rapidly and in different ways I think

That's not accurate. Not every floxed patient experiences tendon ruptures. Buy I had very have pain in my tendons so I could not walk. I took high amounts of magnesium to help it but I think there is not much you can do.

 

[Irat]

That's not accurate. Not every floxed patient experiences tendon ruptures. Buy I had very have pain in my tendons so I could not walk. I took high amounts of magnesium to help it but I think there is not much you can do.

Well you can t detox cipro,only approaches protecting your nervous system...

 

[Martin aka paused||M.E.]

Well you can t detox cipro,only approaches protecting your nervous system...

I fear you're right

 

[Viala]

So as some of you might know, I took Ciprofloxacin in December 2015 and after eight days my ME started to worsen.

I was still mild, but suffered from brutal pain and my POTS started. I had ant running in all extremes and sometimes paralysis, heart rate problems, blurred vision and EXTREME muscle pain (11/10) and was very fatigued. It got better until summer and then after one week of diarrhea it all came back.

I would look at the fluorine component. Detox fluorine. I have actually seen some saying that CFS could be caused by fluorine poisoning and we are all exposed to it in our daily lives. Teflon pans, toothpaste, mouthwash, medicines, water if it is added to water and much more. So I take higher amounts of iodine now and last year I did boron, just in case. Dark Waters movie can be quite encouraging to stop using anything with fluorine in it.

Oh, I remember you have it added to your formula, if you're still using it. I believe we need to have clean diets as much as possible.

 

[BrightCandle]

I was given Ciprofloxacin as well, was used against a series of infections. I already had the continuous headaches but the rest of the ME symptoms that came on slowly did so some time after the series of Cipro uses. I always figured it was microbiome destruction that it caused but if its actually damaged my DNA....well fuck.

 

[Martin aka paused||M.E.]

I was given Ciprofloxacin as well, was used against a series of infections. I already had the continuous headaches but the rest of the ME symptoms that came on slowly did so some time after the series of Cipro uses. I always figured it was microbiome destruction that it caused but if its actually damaged my DNA....well fuck.

Yea it damages mtDNA

 

[Martin aka paused||M.E.]

Prusty answered on Twitter: He thinks that Ciprofloxacin reactivated HHV-6 which lead to mitochondrial fragmentation... The reason is that he showed in a study that drugs can do this (HDACi, DMSO...).

Unfortunately I tested negative for ciHHV-6 and <400 copies in peripheral blood. So I asked him if it could be a reactivation in neurons or tissues (bc HHV are neurotrophic and Cipro can penetrate both). Unfortunately, he only liked the question but did not respond. I take it as a “nice thought”.

That would make sense to me how there is a connection between Ciprofloxacin and ME and the good news would be: you can do sth.

 

[Wayne]

Your thoughts are welcome and appreciated!

I ran across some information about a year ago that some people who've been floxed have been helped by taking Sodium Thiosulfate (STS), which can apparently chelate or detox much of it out of the system. I'm pretty sure I also read that STS is the first line of treatment for arsenic poisoning, as it breaks down the chemical structure, making it harmless. Wouldn't it be great if it did the same thing with Cipro?

 

[Martin aka paused||M.E.]

Wouldn't it be great if it did the same thing with Cipro?

It would!

 

[Gingergrrl]

I decided to do a test.

Please be careful and anyone who has been floxed in the past should avoid all Fluoroquinolones for the rest of their life (unless it was a life or death emergency where there was literally no alternative). It is not worth it to do a test for the potential amount of pain and suffering that it could cause you!

That's not accurate. Not every floxed patient experiences tendon ruptures.

You are correct and I was floxed by Levaquin in early 2010, and it was one of the biggest mistakes of my life, but I did not experience a tendon rupture. It caused a neurotoxic reaction and I was hospitalized (and had never been hospitalized in my life prior to the Levaquin reaction). It also severely injured my right triceps tendon (although it did not rupture). It is now almost 12 yrs later and my right arm is still not fully back to how it was before the Levaquin injury. I am just saying this to please be careful!

 

[Martin aka paused||M.E.]

It is not worth it to do a test for the potential amount of pain and suffering that it could cause you!

You misunderstood... I did a test bc I took it too?!?!

 

[Gingergrrl]

You misunderstood... I did a test bc I took it too?!?!

You are right and I must have totally misunderstood your initial post! I thought you meant that you purposely decided to take Cipro now in order to run a test to check certain lab results. But now I think you meant that you took a test now (in 2021) to see if your results were affected by the Cipro that you had already taken in 2015. If this is what you meant, then I feel much better! And please disregard my earlier comments

 

[perrier]

My daughter was given Cipro for an infection, post surgery, and then she contracted Cdiff and was on Cipro very long. After the Cdiff disappeared she developed ME. What can be done? thank you in advance.

 

[Martin aka paused||M.E.]

My daughter was given Cipro for an infection, post surgery, and then she contracted Cdiff and was on Cipro very long. After the Cdiff disappeared she developed ME. What can be done? thank you in advance.

That's what I try to find out. Fereshteh asks to write to her if the onset/worsening was linked to Cipro etc.
fjahania@stanford.edu

 

[hmnr asg]

I took cipro for prostatitis a few months before the onset of my ME. I stopped taking it after a few days due to extreme pain in my achilles tendon. Even though it has been 11 years I still have pain in my achillies.
I have heard many stories of people whose ME started from cipro, but in my case there was maybe 3 months between stopping cipro and onset of my ME.

 

[SWAlexander]

Your Polysorbate 80 is also very high. Were you tested for blood clots and thrombosis (D-Dimer)?

 

[Martin aka paused||M.E.]

Your Polysorbate 80 is also very high. Were you tested for blood clots and thrombosis (D-Dimer)?

That’s because I take Tenofovir which has Polysorbat 80 I think

 

[Martin aka paused||M.E.]

I took cipro for prostatitis a few months before the onset of my ME. I stopped taking it after a few days due to extreme pain in my achilles tendon. Even though it has been 11 years I still have pain in my achillies.
I have heard many stories of people whose ME started from cipro, but in my case there was maybe 3 months between stopping cipro and onset of my ME.

Yes, but that is typical. Side effects often occur months later. I can only explain this with the replication circle of cells in your body (more and more damaged mitochondria).
Trust me, I'm following this since 2019 as a Community Ambassador for OMF and have met dozens of pwME who have a similar trajectory.