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Curious about connection between ME/CFS and Levaquin/FQ antibiotics?

Messages
33
The entire downfall of my health began with a neurotoxic reaction to the antibiotic, Levaquin, in early 2010. It damaged the triceps tendon in my right arm and triggered an overall toxic reaction to my immune, muscular and autonomic systems. I saw specialists for a year and a half, took many supplements, did PT, etc, and finally improved.

However, in 2012 I got mono from EBV and never recovered. My naturopath is convinced that the Levaquin messed up my system making me susceptible to mono and many other health problems. I have been officially diagnosed with CFS by several MD's but many are still unaware of the connection to Levaquin (in my own case.)

It has an official name now "Fluoroquinolone Toxicity Syndrome" and I am including a link of a letter written by Dr. Jay Cohen to the Senate re: this issue.

Here is the link:

http://www.medicationsense.com/articles/2014/letter.php

My question for the board is: are there others here who were negatively affected by Levaquin or other FQ antibiotics (cipro, floxin, avelox, etc) who later went on to develop ME/CFS? I am very appreciative of any feedback on this issue and thank you for reading.
Hi
I just joined this board recently. I took Cipro, Levaquin and Hydroxycloroquine. I suggest if anyone is seeing a Specialist and they suggest Plaquenil (Hydroxychloroquine) to be very cautious. This drug can also have horrendous side effects to sensitive people. Odd, my problems all started after Fluorquinolones and here I am on a ME/CFS board.
I wonder how many problems out there such as Fibromyagia are caused by ADRs, especially quinolones.
 

Gingergrrl

Senior Member
Messages
16,171
Hi I just joined this board recently. I took Cipro, Levaquin and Hydroxycloroquine. I suggest if anyone is seeing a Specialist and they suggest Plaquenil (Hydroxychloroquine) to be very cautious. This drug can also have horrendous side effects to sensitive people. Odd, my problems all started after Fluorquinolones and here I am on a ME/CFS board.I wonder how many problems out there such as Fibromyagia are caused by ADRs, especially quinolones.

@Ambivalent Welcome to the board and as you can see, we are a diverse group here!

I wanted to clarify from your post (in case I misunderstood it) that Plaquenil is not a fluoroquinolone antibiotic and not in the same class of meds as Levaquin, Cipro, Avelox, etc. I do not know anything about that med so I cannot comment on it.

But I do wonder as to your second question re: how many people had adverse drug reactions to fluoroquinolone antibiotics and later went on to develop fibromyalgia and CFS? In my case, two years after having fluoroquinolone toxicity syndrome, I had a severe case of mono from EBV which was the final nail in the coffin for me b/c both are believed to damage the mitochondria.

I believe, and so do my doctors, that the first weakened my overall system making me more susceptible to the second. I cannot prove any cause and effect as there are no bio-markers for anything but both issues contributed to the downfall of my health (in my case.)
 
Messages
33
@Ambivalent Welcome to the board and as you can see, we are a diverse group here!

I wanted to clarify from your post (in case I misunderstood it) that Plaquenil is not a fluoroquinolone antibiotic and not in the same class of meds as Levaquin, Cipro, Avelox, etc. I do not know anything about that med so I cannot comment on it.

But I do wonder as to your second question re: how many people had adverse drug reactions to fluoroquinolone antibiotics and later went on to develop fibromyalgia and CFS? In my case, two years after having fluoroquinolone toxicity syndrome, I had a severe case of mono from EBV which was the final nail in the coffin for me b/c both are believed to damage the mitochondria.

I believe, and so do my doctors, that the first weakened my overall system making me more susceptible to the second. I cannot prove any cause and effect as there are no bio-markers for anything but both issues contributed to the downfall of my health (in my case.)
Thanks for your response. I know my problems started after Cipro, etc. The reason I mentioned the Plaquenil
is it is a Antimalarial I think given for Rheumatoid Arthritis and other autoimmune diseases. I took it for a month 3 years ago for joint pain and it was a nightmare as well as Cipro years ago. I wish I would have left my system alone and never have took anything. But thats the past. I am trying to find a reason why I reacted so poorly to Magnesium Sulphate recently. Made my joints weak and now have severe Hypnic jerks at night.
 
Messages
3
Greetings. I had acute onset CFS in 1992.

Never had any allergy or reaction to a drug before. No chronic medical problems other than the CFS, except for chronic bronchitis after a cold - which morphed into a lung-only-expressed dust allergy mid-1980s - took the shots for that and the allergy/bronchitis went away after a year or so.

So around 1998-99, I took Cipro for enlarged prostate and had the big-time shoulder blade tendon pain - I ran across one lonely post about this reaction on the Web and stopped taking the Cipro, luckily before the tendon ripped out. I still have occasional pain there - magnesium and glucosamine sulfate help when it kicks up.

Unfortunately I have no memory or records of taking any quinolones/Cipro in my youth before my CFS hit - in the years before 1992 that is (it is probable that I took it at some point, as I had my share of short-term infections in my youth and quinolones were among the most-prescribed antibiotics I figure) ... but for sure I wasn't taking it when the CFS hit, nor immediately beforehand. ... My 2 cents hope it helps.

As this is my first post here AFAIK, don't mean to steer this topic but wondering if CFS is genetic - reading recent studies on the compromised basal ganglia - dopamine's lessened effects there etc. and wonder if that could have been expressed long before the main energy problems/sickness/fibro express themselves.
 
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Gondwanaland

Senior Member
Messages
5,094
This page has a lot of info on Fluoroquinolones:
http://floxiehope.com/2013/06/20/what-is-fluoroquinolone-toxicity/

Mercola has several articles on the subject, and some of his readers made interesting comments:
http://search.mercola.com/results.aspx?q=fluoroquinolone

Last year I have been prescribed cipro for an inexistent UTI (which actually was magnesium deficiency) that only made me even more magnesium deficient...
I am trying to find a reason why I reacted so poorly to Magnesium Sulphate recently. Made my joints weak and now have severe Hypnic jerks at night.
I could never tolerate Epsom Salts, but I believe this is unrelated. Im my case I think it is due to ammonia build up caused by my SNPs.
 
Messages
33
This page has a lot of info on Fluoroquinolones:
http://floxiehope.com/2013/06/20/what-is-fluoroquinolone-toxicity/

Mercola has several articles on the subject, and some of his readers made interesting comments:
http://search.mercola.com/results.aspx?q=fluoroquinolone

Last year I have been prescribed cipro for an inexistent UTI (which actually was magnesium deficiency) that only made me even more magnesium deficient...

I could never tolerate Epsom Salts, but I believe this is unrelated. Im my case I think it is due to ammonia build up caused by my SNPs.
Thanks for your reply. I read a post where a person suffering with Ehlers Danlos Syndrome reacted poorly
to Epson Salts. Worsened her hypermobility causing severe joint pain. I won't be using Epson Salts again. My apologies I am not familiar with SNPs.
 
Messages
33
@Ambivalent Welcome to the board and as you can see, we are a diverse group here!

I wanted to clarify from your post (in case I misunderstood it) that Plaquenil is not a fluoroquinolone antibiotic and not in the same class of meds as Levaquin, Cipro, Avelox, etc. I do not know anything about that med so I cannot comment on it.

But I do wonder as to your second question re: how many people had adverse drug reactions to fluoroquinolone antibiotics and later went on to develop fibromyalgia and CFS? In my case, two years after having fluoroquinolone toxicity syndrome, I had a severe case of mono from EBV which was the final nail in the coffin for me b/c both are believed to damage the mitochondria.

I believe, and so do my doctors, that the first weakened my overall system making me more susceptible to the second. I cannot prove any cause and effect as there are no bio-markers for anything but both issues contributed to the downfall of my health (in my case.)
I recently found a piece on CBS News about Antimalarial drugs Toxicity specifically Mefloquine. I will leave the link here.
http://www.cbsnews.com/news/some-us-troops-haunted-by-anti-malaria-drugs-side-effects/
 

zzz

Senior Member
Messages
675
Location
Oregon
@Ambivalent, welcome to Phoenix Rising!

As this is my first post here AFAIK, don't mean to steer this topic but wondering if CFS is genetic - reading recent studies on the compromised basal ganglia - dopamine's lessened effects there etc. and wonder if that could have been expressed long before the main energy problems/sickness/fibro express themselves.

Yes, there is a lot of data showing that CFS has a large genetic component. Many people (including me) have subclinical signs of some of their later symptoms long before their CFS occurs.
I could never tolerate Epsom Salts, but I believe this is unrelated.

Some people can't tolerate sulfates, and get reactions such as headaches and nausea from them. Since Epsom Salts are magnesium sulfate, these people can't tolerate them.
Thanks for your reply. I read a post where a person suffering with Ehlers Danlos Syndrome reacted poorly to Epson Salts. Worsened her hypermobility causing severe joint pain.

Large doses of any type of magnesium can cause this problem for people with EDS. The magnesium loosens the muscles, allowing the joints to move even more. For people without EDS, this doesn't happen though.

And now to get back to the original topic: I took Cipro exactly once in my life. The first dose gave me hallucinations, and so I stopped it. However, I recently realized that that single dose was taken less than two months before the first onset of my CFS in 1990. That no longer seems like a coincidence.
 
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Gingergrrl

Senior Member
Messages
16,171
@Gondwanaland and @Ambivalent Thank you for posting all the links on FQ antibiotics and Mefloquine (Larium.) These meds should be avoided at all cost and are about as toxic as a medication could possibly be. As each older one gets pulled from the market, they re-package it and it gets FDA approval all over again.

My reaction to Levaquin (which I was given for a throat infection) cost me a year and half of my life that I could not use my right arm. I cannot stress enough how dangerous they are and from the Larium link, the military is no longer giving them to the elite units for a reason.

ETA: FQ antibiotics also strip your body of Magnesium.
 
Messages
33
@Gondwanaland and @Ambivalent Thank you for posting all the links on FQ antibiotics and Mefloquine (Larium.) These meds should be avoided at all cost and are about as toxic as a medication could possibly be. As each older one gets pulled from the market, they re-package it and it gets FDA approval all over again.

My reaction to Levaquin (which I was given for a throat infection) cost me a year and half of my life that I could not use my right arm. I cannot stress enough how dangerous they are and from the Larium link, the military is no longer giving them to the elite units for a reason.

ETA: FQ antibiotics also strip your body of Magnesium.
Hi
I try to warn as many people as possible about FQ dangers. I will leave two links
of excellent videos on FQ toxicity. Please pass them on to friends and family.