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

Gingergrrl

Senior Member
Messages
16,171
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.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
Years ago I was on a benzo board and one of the drugs to NOT take was quinolones. I have in my medical chart that I am allergic to Quinolones. So I believe you when you say that was the downfall for you.

I remember seeing someone on Oprah years ago that had a horrible reaction to Cipro.

Why is another thing.
 

Sidereal

Senior Member
Messages
4,856
I took a 12 day course of Cipro in 2012 and this significantly worsened my ME/CFS symptoms, especially autonomic symptoms like POTS.
 

Helen

Senior Member
Messages
2,243
Hi @Gingergrrl43 ,
I thought of the possibility that the medication put demand on your glutathione (like high doses of paracetamol does) and that you have a genetic susceptibility for a methylation blockage that so many of us here have. (People that overdose paracetamol get IV glutathione at the ER).

Or you might have gene defects that decreases your ability to detox normally via the liver. Maybe you can find the actual medications among the listed here: http://www.gdx.net/core/sample-reports/Detoxi-Genomics-Sample-Report.pdf
Just some ideas. A 23andme gene test might give you valuable information. Sorry, I couldn´t get access to the link that you posted.
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
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.

I already had CFS for many years when I was prescribed Cipro. It didn't make my CFS any worse than it already was, however, I became lactose intolerant. It wasn't until the second time I was put on Cipro that anyone made the connection.
 

Gingergrrl

Senior Member
Messages
16,171
I just wanted to bump this to the top in case there are any other fluoroquinolone victims on this board. I would love to hear your stories and how FTS related to your ME/CFS diagnosis. Thank you again to everyone who replied.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I got frozen shoulders and knees and severe brain fog last year from quinolones. This mirrors some, if not all of my initial symptoms when I came down with me/cfs. I was given these in 1990 for severe chest congestion that wouldn't clear up. And then in 2013 for severe uti.

Back in 1990, because my drs were morons / assholes the stress was too much for me to remember the exact sequence of how my body broke down. Included were daily bladder spasms, myoclonus, insomnia, frozen shoulders and knees, myofascial pain syndrome, fibromyalgia, ibs, tingling and numbness in both hands, ataxia, severe foot pain, etc.etc.

Imho I believe I healed this time because of my diet. I'm a celiac and since stopping gluten in 2005 my body heals.

Hth .. x
 

Gingergrrl

Senior Member
Messages
16,171
I got frozen shoulders and knees and severe brain fog last year from quinolones. This mirrors some, if not all of my initial symptoms when I came down with me/cfs. I was given these in 1990 for severe chest congestion that wouldn't clear up. And then in 2013 for severe uti.

Back in 1990, because my drs were morons / assholes the stress was too much for me to remember the exact sequence of how my body broke down. Included were daily bladder spasms, myoclonus, insomnia, frozen shoulders and knees, myofascial pain syndrome, fibromyalgia, ibs, tingling and numbness in both hands, ataxia, severe foot pain, etc.etc.

Imho I believe I healed this time because of my diet. I'm a celiac and since stopping gluten in 2005 my body heals.

@xchocoholic Thank you so much for your reply. In my case, I took Levaquin in 2010 and it severely injured the triceps tendon in my right arm. I literally could not write, type, open a bottle, hold a cup or do anything involving a gripping motion. I became extremely sick and saw about 15 different doctors b/c my entire system had a neurotoxic reaction. They tested for everything from MS, brain tumor, etc, until all agreed it was due to the Levaquin (including the prescribing ENT.) I did six months of physical therapy for my arm but developed the first signs of dysautonomia.

I became a staunch advocate against the fluoroquinolone antibiotics and read the entire "Flox Report," watched videos, and did everything in my power to heal. After a year and a half and was back to near 100% functioning and then following a minor surgery, I got mono from EBV. Things deteriorated from there and now I have CFS and all that goes with it. My naturopath is convinced that Levaquin was the trigger that set the stage for this entire cascade of events. I really believe that many people out there with CFS and fibromyalgia, etc, have taken these antibiotics and had a neurotoxic reaction but just never made the connection which kills me when I think about it.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I was taking Advil, etc for kidney stone and joint pain before my shoulders finally went out completely. At that point I googled
Flouroquinolones and found the connection.

My gp sent me to pt. I went for a few weeks and it helped a tiny bit but due to pem I couldn't continue. My body began to heal after about 6 months but I'd have to see the pt again to get a full exam to see how close I am to normal now. I can wash my back again tho.

I appreciate your efforts. We patients would be screwed if it weren't for other patients telling our stories on the web. The manufacturers make our reactions seem rare. I'm curious about those who only have a minor reaction so they never make the connection and continue taking these for other infections. Heaven forbid their doctors would recognize a problem. Duh !

There are other threads on this forum about this. Mine's here.

I've been completely disabled since 1990 and as far as I can tell I haven't gotten any worse from this last exposure. My worst symptom is constant OI and it always flares if I have an infection.
I recently learned that I'm getting utis frequently and I get too confused to recognize my symptoms as utis. Duh !

Most of my other symptoms are from food and chemical intolerances. Avoiding these is the best way for me to avoid the corresponding reactions.

So I feel like I'm back to my normal crappy me/cfs post quinolones.

I'm exhausted now but wanted to ask if you looked at gluten ? Most celiacs are intolerant of dairy at least until their villi heal.

Tc .. x
 

Gingergrrl

Senior Member
Messages
16,171
I appreciate your efforts. We patients would be screwed if it weren't for other patients telling our stories on the web. The manufacturers make our reactions seem rare. I'm curious about those who only have a minor reaction so they never make the connection and continue taking these for other infections. Heaven forbid their doctors would recognize a problem. Duh !

@xchocoholic Thank you and I will continue to spread the word about the dangers of FQ antibiotics until my last breath! The manufacturers do make it seem like the neurotoxic reaction is less than 1% but in reality the numbers are much higher. One girl took Levaquin as a teenager and had eight different tendons rupture. A great documentary to watch about it (for anyone interested) is called "Certain Adverse Events." I know the woman who made the documentary (we met due to both having had severe reactions to Levaquin) and it is an excellent documentary.

On another topic, I am so excited for the day when "Canary in a Coal Mine" comes out. I learned about it from this board and I know it will bring so much info and light to the public about CFS. Is there a specific thread about it? I know there must be, I just forgot how to find it!
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I googled cfs canary in coal mine and saw the author's name. It's late so I forgot it already. Lol. But searching pr for the author should find threads.

I'll look for the quinolone doc.

Gotta sleep. Tc . X
 

Hip

Senior Member
Messages
17,770
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.)

When you say that there is a connection between Levaquin and ME/CFS, where did you read this, can I ask?

I just performed this Boolean Google search, but can find no articles or comments linking Levaquin (or other fluoroquinolones) and ME/CFS.

Fluoroquinolones can precipitate peripheral neuropathy symptoms, which can last for months or even be permanent. The nerve damage of peripheral neuropathy can include dysautonomia, and some forms of dysautonomia have symptoms similar to ME/CFS. But apart from that, I have not found any links between fluoroquinolones and ME/CFS proper.


One drug that has been linked to precipitating ME/CFS is corticosteroids: Dr John Chia has repeatedly observed that when patients were given a course of corticosteroids at the same time that they had picked up an acute enterovirus infection, this would trigger ME/CFS in some cases. See here: Corticosteroids (Steroids) Such as Prednisone May Cause ME/CFS
 

jann1033

Senior Member
Messages
176
I took cipro a number of times. That was shortly after 9/11 so I had CFS long before that (in 1988, cant remember the yr of 9/11 right now so it could be related to the flare that started in around 1990 but have a hard time with dates right now and to tired to look it up)but did take penicillin immediately before I got CFS and a few times the preceding year .

Steroids have always helped my CFS symptoms so IMO that would be odd if it caused it, however they do lower you ability to fight infection so perhaps the blame lies in them allowing the virus or whatever actually causes it to to get a firm hold.

I kind of wonder if that could be with CFS in general, something allows a previously dormant virus to flourish, maybe by killing off something beneficial via an antibiotic since so many get it after a viral illness but not the same illness.
 
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Gingergrrl

Senior Member
Messages
16,171
When you say that there is a connection between Levaquin and ME/CFS, where did you read this, can I ask?

@Hip My answer is kind of complex but in a nutshell there is a neurotoxic reaction to Levaquin and FQ antibiotics called "Fluoroquinolone Toxicity Syndrome" and I have some excellent links that explain it but cannot access them right now (we had to temporarily move out of our home due to mold so I am not on my own computer.)

There are several journal articles from Dr. Jay Cohen, and a huge report called the "Flox Report" which explains it in detail. Levaquin now carries three FDA black box warnings. Many of the FQ antibiotics have been pulled from the market in other countries due irreversible side effects but in the U.S. they are major cash cows and prescribed like candy.

The way my ND explained it (in my case) is that the Levaquin permanently altered my system (endocrine, neuroimmune, cardiac, autonomic, muscular, etc) and set the stage for a cascade of events. Two years after I was injured by Levaquin, I got mono from the EBV virus. My ND thinks that had I not had the multiple injuries from Levaquin, I may have recovered from mono and not gone on to get CFS. At this point, there is no way to separate the two so we will never know.

The main thing I want to convey is that many people with FTS, later go on to develop CFS (but whether it is causal or correlation, genetic susceptibiIity, I do not know.)
 

Hip

Senior Member
Messages
17,770

Well, I could find no studies, articles or forum comments that talk about a link between fluoroquinolone antibiotics and ME/CFS. I appreciate that fluoroquinolones can have toxic effects though.

I did find a possible connection between Gulf War Syndrome and fluoroquinolones though:
Could Gulf War Syndrome be a result of Fluoroquinolone antibiotic toxicity? - San Francisco Holistic Health | Examiner.com
 
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Gingergrrl

Senior Member
Messages
16,171
@Hip, thank you for mentioning that and I truly believe that the Cipro (for Anthrax) and/or Larium (for malaria) was the cause of Gulf War Syndrome. Both are Fluoroquinolones in the same class as Levaquin. I know the veterans were exposed to many other chemicals so it is a confounding situation similar to mine.

I hope my earlier posts did not confuse anyone and what I was trying to convey was the neurotoxicity of this class of antibiotics. They alter your body chemistry forever and taking one was the worst mistake I ever made. If I can prevent one person from what I went through with Levaquin, I will be very happy!
 

Hip

Senior Member
Messages
17,770
Assuming you did get nerve damage from fluoroquinolones, you might want to investigate whether you in fact have POTS (postural orthostatic tachycardia syndrome) as a result of this damage, rather than ME/CFS. Symptoms are similar, but POTS is more treatable.



There have been a few accounts of ozone therapy leading to recovery from fluoroquinolone toxicity syndrome (FTS). See here:

Bill’s Recovery Story – Avelox Toxicity

Ricardo’s Story – Recovery from Ciprofloxacin Toxicity

I think the treatments were by ozone autohemotherapy, which requires a doctor to do.

It's possible that the easy ozone application technique that I devised (see this post), which costs very little and can be done at home might be a good substitute for ozone autohemotherapy, but I am not sure.
 
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Gingergrrl

Senior Member
Messages
16,171
@Hip in my case unfortunately I got a severe case of mono from EBV two years after my reaction to Levaquin. My EBV titres are sky high and I did not have the severe fatigue and POTS symptoms until after mono. My cardiologist, endo & ND all diagnosed me w/CFS but only my ND has experience treating it. She felt the Levaquin damaged my system which set off the chain.
 
Messages
15
Location
Sacramento,CA,USA
ive had a severe reaction.it didnt cause my ME but definately made me alot worse. im a long termer,sick 30yrs. i cant say exactly how long ago it happened,4-7yrs ago ugh my memory. i was given levaquin for sinus infection. the same day i began to have constant vertigo spells. doc said it was the sinus infection not the meds so i kept taking it. unfortunately levaquin stays in your system for some time, so for weeks,24/7, i had from light to severe vertigo spells.

it took majority of the year to recover from it, vertigo letting up over time. about 1yr later i was givin levaquin again for a spider bite. just my luck.since it seamed reasonable that the last time was sinus i took it again, but i had exact same reaction only this time stronger and a lasting impact.

i was housebound before this but was able to travel by car to docs. ive not been able to handle any kind of travel since, i make it a few blocks and the vertigo spells get so severe it triggers a full siezure. while the severity of the vertigo spells have improved, my sensitivity to triggering them has not

after the last reaction i noticed they changed the possible side effects to include lowering the threshold to siezures. lovely

side note:
the person that made canary in the coal mine had her own youtube channel that she posts to from time to time, called the "thrive show". there are threads in PR talking about it, here is a link just in case
https://www.youtube.com/channel/UCz5-HmaNko318QqYJGgb7jA