Ciprofloxacin and other flouroquinolones

[Martin aka paused||M.E.]

Hi guys,

to make it short: I am quite sure that my ME started after one week of ciprofloxacin. Since I heard that this is also true for others here on PR and due to the fact that being floxed means having the same symptoms like ME I thought it could be beneficial to draw Ron's attention to flouroquinolones. I think - maybe - if one understands what these nasty bastards cause in the body it could help the understanding of ME.

If you don't believe this, check this out www.floxiehope.com ... you can read through the recovery stories.

What do you think? I don't want to bother him with unuseful stuff...

 

[gregh286]

trigger could have been what you were on cipro for in first place.
gut microbiome alterations causing CFS/ME, i would be on that bandwagon easily.

 

[Vojta]

They are toxic to mitochondria so it would not be a surprise that it can lead to all sorts of problems. I was seriously damaged by other antibiotics also due to possible mito toxicity when I already had ME and they caused me lot of new permanent syndromes.
What kind of infection did you have?

 

[pattismith]

yes fluoroquinolone has also specific toxicity and can impair neuromuscular junction and there are several case reports of intracranial hypertension from their use.

Do you suffer from muscle weakness, and/or head pressure?

 

[Martin aka paused||M.E.]

yes fluoroquinolone has also specific toxicity and can impair neuromuscular junction and there are several case reports of intracranial hypertension from their use.

Do you suffer from muscle weakness, and/or head pressure?

I know that I am floxed... The point I made is that this seems to be exactly the same like ME. https://floxiehope.com/about/

I think if you ask nearly any with ME if he/she has muscle weakness you will get a positive answer...

 

[pattismith]

I know that I am floxed... The point I made is that this seems to be exactly the same like ME. https://floxiehope.com/about/

I think if you ask nearly any with ME if he/she has muscle weakness you will get a positive answer...

well, the reason why I ask you is that weakness from a neuro-muscular junction impairment is similar to Myasthenia Gravis (MG) and medication for MG can help in that case = MESTINON
Some ME patient have their muscle function improved by this drug.

I had toxicity from Doxycycline and Macrolides which seem to have impaired my muscular ion channel (it's a different pathway than MG), so I was not improved by Mestinon but I was improved by another drug used for muscle channelopathy = Diamox.

 

[andyguitar]

This does not suprise me. Drugs do bad things to some people. Crazy that the link is not made very often. I have been banging on about it for a while now. Pretty much a waste of time.

 

[Vojta]

well, the reason why I ask you is that weakness from a neuro-muscular junction impairment is similar to Myasthenia Gravis (MG) and medication for MG can help in that case = MESTINON
Some ME patient have their muscle function improved by this drug.

I had toxicity from Doxycycline and Macrolides which seem to have impaired my muscular ion channel (it's a different pathway than MG), so I was not improved by Mestinon but I was improved by another drug used for muscle channelopathy = Diamox.

How did you get this tested? I always hit the wall when I try to convince any neurologist to diagnose damage done by the atbx.

 

[Martin aka paused||M.E.]

well, the reason why I ask you is that weakness from a neuro-muscular junction impairment is similar to Myasthenia Gravis (MG) and medication for MG can help in that case = MESTINON
Some ME patient have their muscle function improved by this drug.

I had toxicity from Doxycycline and Macrolides which seem to have impaired my muscular ion channel (it's a different pathway than MG), so I was not improved by Mestinon but I was improved by another drug used for muscle channelopathy = Diamox.

hm okay... I don't know if it sounds stupid but I have to admit that I can not tell you if I have muscle weakness or just overall weakness... I can lift things like beer boxes or so. But my muscles will shake while doing this. And when overdoing it I will get bad crashes 12-24 hours later. Is this muscle weakness?

At this point I wont make any experiments with medications. After cipro I find this idea crazy. Not for others here on PR - don't get me wrong - but for me.

But again: I can't find the difference between being floxed and having ME. In my opinion, the floxed all have ME! So if one could understand what flouroquinolones exactly do, that might be helpful with ME as well...

 

[Learner1]

How did you get this tested? I always hit the wall when I try to convince any neurologist to diagnose damage done by the atbx.

What good would it do if a neurologist diagnosed you? Would they give you a drug to fix it?

I was on Cipro for 4 months awhile back and on 2 chemotherapy drugs which specifically target mitochondria to kill cancer, but they do have an impact on normal cells.

Mitochondria recycle every 6 weeks or so and reform with the ingredients available to do so. They have repair mechanisms. There's also a tipping point where the bad ones have more impact than the good ones, so its in your best interest to have the highest number of good ones to outnumber the bad. (This is all in laymen's terms, but I picked it up from the researcher's presentations at a mitochondrial conference.)

My doctor and I are using several strategies to help mine:

• NT Factor - to repair membranes
• Exercise - to promote mitochondrial biogenrsis (PQQ can help, too, if you can't tolerate any exercise)
• PolyMVA - removes toxins from mitochondria (They tend to be stored in mitochondria)
• CoQ10, niacinamide, NADH, NAD+ - support for ATP production

Hoping for success, but it seems to help.

 

[andyguitar]

They interfere with GABA receptors.

 

[Vojta]

@Learner1 It would be nice to know if the damage is irreversible or not as my the worst symptoms are neurological and induced by atbx. It would answer the question if I should pursue other potentionally useless treatments or I should opt out for euthanasia. It's more complicated because I have some weird complex symptoms beyond typical ME which nobody seems to have and nobody cares to investigate it further.
Also it seems I developed MCAS (with neurologic symptoms) which could be maybe improved with right drug.

What if long term use of atb can lead to mtDNA mutations all new mitos will be bad and beyond repair. I haven't had any atbx for a year and there is no improvement in last 6-8 months and I still have all the symptoms.
Also temporary mito dysfunction on top of primary mechanism of ME could lead to damage to cells themselves by oxidative stress induced by combination of drug and exhaustion.

For example flouroquinolones caused me peripheral neuropathy about 3-4 years ago but it was reversible in matter of months.

 

[andyguitar]

Doubt that you would have mtDNA mutations on all new mitos. Not a subject that I am that familiar with but I expect you would be much,much worse if that was happening. Not suprising you are feeling negative after what you have been through. But dont get despondant. Human body can take a lot and recover.

 

[Learner1]

@Vojta Euthanasia is pretty irreversible, so its best to contemplate less permanent solutions.

I've found a great deal of help from functional medicine and nutritional interventions. 75% of drugs damage mitochondria.

I started reading Naviaux's, Garth Nicolson's, Sarah Myhill's, Pall's and Morris & Maes' papers and realized my exposures and genetics set me up for problems. Fortunately, I've been able to work with 2 top naturopathic doctors and we discussed all of the above and customized a program for me of mito friendly nutrients.

I had neuropathy, neurological symptoms, and I have MCAS also. Interventions, such as a high healthy fat diet, lipid replenishment, high dose B6 and NAC, a hefty methylation protocol, and careful exercise have helped tremendously, along with treating toxicity and infections to remove mitochondrial stressors.

For MCAS, my symproms were well managed with 5-MTHF, methyl B12, B5, vitamin C and curcumin. I started IVIG treatment which flares them up, and had to add fexofenadine, ketotifen, diphenhydramine, more B5, and boswellia, which got them under control.

PM me if you'd like to discuss.

 

[Martin aka paused||M.E.]

@Vojta Euthanasia is pretty irreversible, so its best to contemplate less permanent solutions.

I've found a great deal of help from functional medicine and nutritional interventions. 75% of drugs damage mitochondria.

I started reading Naviaux's, Garth Nicolson's, Sarah Myhill's, Pall's and Morris & Maes' papers and realized my exposures and genetics set me up for problems. Fortunately, I've been able to work with 2 top naturopathic doctors and we discussed all of the above and customized a program for me of mito friendly nutrients.

I had neuropathy, neurological symptoms, and I have MCAS also. Interventions, such as a high healthy fat diet, lipid replenishment, high dose B6 and NAC, a hefty methylation protocol, and careful exercise have helped tremendously, along with treating toxicity and infections to remove mitochondrial stressors.

For MCAS, my symproms were well managed with 5-MTHF, methyl B12, B5, vitamin C and curcumin. I started IVIG treatment which flares them up, and had to add fexofenadine, ketotifen, diphenhydramine, more B5, and boswellia, which got them under control.

PM me if you'd like to discuss.

Wish I had this knowledge or - even better - a doctor with that knowledge. All I can do is wait for nothing... and try to improve my gut... Everything else seems to be impossible to elaborate with this brain fog and a knowledge of biochemistry like a 5 years old boy (compared to my knowledge in maths this is still quite good!).

 

[andyguitar]

I think you have a very good chance of getting better. Might take a while though. Good luck to ya.

 

[Martin aka paused||M.E.]

I think you have a very good chance of getting better. Might take a while though. Good luck to ya.

The craziest thing is that after I got floxed in January I was as bad as today... then two months later I was doing quite good, in summer I was doing great (going to the gym, working full time etc... no symptoms) and then in August it all crashed... until know...

 

[Learner1]

Wish I had this knowledge or - even better - a doctor with that knowledge. All I can do is wait for nothing... and try to improve my gut... Everything else seems to be impossible to elaborate with this brain fog and a knowledge of biochemistry like a 5 years old boy (compared to my knowledge in maths this is still quite good!).

@MartinDH You can do it. Its not rocket science. It just takes persistence. I started reading about all of this 9 years ago and kept reading and reading things over until I understood the theories and then experimented, learning lessons along the way. There are no right answers.

The frustrating thing is battling on so many fronts. Gut health is important, but attention to the other problems we have is important, too. Battling efficiently will get us well faster.

 

[andyguitar]

I know it's crap being ill but at least you have got a pretty good idea about what is going on. The fact that you were well in summer is a very good sign that all will be well with you in the future.

 

[Gingergrrl]

What do you think? I don't want to bother him with unuseful stuff...

I think it is good to present all theories, and I suspect that Dr. Davis has heard about the Mito damage and neurotoxic reactions to FQ antibiotics before, but just in case he has not looked into it, it cannot hurt in my opinion. Being floxed by Levaquin was the first immune trigger of my illness and took 1.5 years to recover from. It's an extremely dangerous class of meds but you already know this and I am preaching to the choir.