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FQ antibiotics toxicity - a light bulb moment?

Discussion in 'General ME/CFS Discussion' started by slysaint, Dec 26, 2015.

  1. slysaint

    slysaint Senior Member

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    I will try and keep this brief.
    I have searched the forum and found some mention of Fluoroquiolone toxicity syndrome (now also being associated with Gulf war syndrome). A while ago I was looking into Ciprofloxacin as I had it immediately before onset of ME symptoms and again after diagnosis back in 2001. Because most things I read seemed to start with the ruptured tendons I discounted the idea.
    But, by chance, I came across other sites, forums, scientific papers which presented a much wider set of symptoms and a light bulb went on in my head (doesnt happen very often).
    here are a couple:
    http://www.curezone.org/forums/description.asp?f=901
    http://www.theecologist.org/News/ne...biotic_ciprofloxacin_linked_to_uk_deaths.html
    there is a support group for UK on Facebook but as Im not an FBer i haven't looked.

    Apparently there is a test : DNA Adduct mass spectrogram analysis; to detect quinolone molecules.
    Has anyone been tested? How do you get the test? And (I know this is highly unlikely) could I get it thro the NHS?
     
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    @AaroninOregon might be able to help you. There is a floxie group somewhere too.

    You might be able to read the facebook stuff without signing up depending on their settings.
     
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  3. digital dog

    digital dog Senior Member

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    Nasty nasty drugs.
    Friend completely disabled by antibiotics.
    Would rather take chances of infection than take copra or augmentin.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @slysaint I had not heard of this test and was wondering if you have a link to it or where it is offered? My illness began with FQ toxicity syndrome in 2010 and this was literally ground zero for me where I went from excellent health to practically being an invalid overnight.

    Although it did nearly rupture my triceps tendon, I had a complete systemic neurotoxic reaction and was hospitalized to rule out brain tumor, MS, Guillane Barre, etc (which were all negative) and even the ENT who prescribed it along with other docs he referred me to believed it was FQ toxicity syndrome. I did a consult with an expert on this issue (back in 2010) and he confirmed this as well.

    No one ever mentioned this test to me so am very interested to learn more (or any details that you may have?) Much less was known in 2010 when it happened to me and it took 1.5 years to be able to fully use my arm again and it will never be normal as it was pre-Levaquin. Taking Levaquin was one of the worst decision I ever made.
     
  5. Aviva3

    Aviva3 Guest

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    I'm new on this site because my profound fatigue is the most disabling of all my symptoms.....not much I can do except research. I just now wish to draw attention to dysautonomia, which is described here. It is a deregulation of the "fight or flight" response, and it can be completely disabling. It can affect heart rates, blood pressure, digestion, production of saliva and tears.....basically I have a list of 21 symptoms now...

    Another term for this is autonomic small fiber neuropathy (SNF). I also have sensory SNF, which causes pain and many of unpleasant sensations described in the article. Like Gingergrrl, I was hit (hard and fast). However, I became ill because of a toxic reaction to antidepressants and a resultant abrupt withdrawal. I am well-aware the group of antibiotics cited here can be neurotoxic.

    Anyway, whether the cause is iatrogenic neurotoxicity, use of other drugs and or alcohol, an underlying immune disorder (although I guess most folks on this site would have been tested), or no reason at all, dysautonomia may the root cause of problems experienced by at least some people here. I have seen reference to it on this site, but it's worth repeating.

    SFN can be detected through skin biopsies. There are a variety of other diagnostic procedures as well. It is helpful to have these results as I navigate the world of disability insurance.

    Not much available treatment for my form of this illness....but there are meds for symptom alleviation. The good news is nerves can heal.....albeit very, very slowly. I have been very ill for over a year, and although some things are improving (like digestion), my fatigue and heart irregularities persist. My pain is worsening, which is disconcerting.

    I am also struggling mightily with my lost health and identity, for I am completely unable to work...(I've been virtually bedridden for almost a year). I too was very high-functioning and athletic when this hit...another reason I take comfort in this site.

    Two other forums I find helpful are DINET (Dysautonomia International) and "Neurotalk."

    I hope this is not too redundant for readers, but few people (and doctors --like my first neurologist) understand the variations and complex presentations of dysautonomia.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    @Aviva3 I have some questions for you and thank you for posting. If you are not comfortable responding publicly, please feel free to send me a PM (private message.)

    I was wondering of your 21 symptoms if you experience shortness of breath with standing, walking, or exertion of any kind?

    What type of meds did your doc recommend (in general) and wonder if they differ from the standard dysautonomia meds that have been offered to me thus far. In my case, I improved after 1.5 years from the Levaquin reaction, only to get mono, a second virus, mold exposure, etc, so too many triggers to even tease apart anymore.

    What type of heart irregularities? Do you get angina/chest pain or tachycardia or IST/POTS?

    I am familiar with Dinet but have not heard of Neurotalk. Are there people on Neurotalk who experience significant shortness of breath or have failed lung functioning tests? I am trying to leave no stone un-turned in my search to find answers.

    Thanks in advance!
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    https://drive.google.com/file/d/0BzLMHZg5q0Y3US1pNVBVc21ubVk/edit

    I found some very good info on the test that @slysaint inquired about. I have no idea if I can find a way to get it and even if I can, I don't think there is any treatment. I read through it quickly and plan to read it again more thoroughly. I have no doubt that Levaquin caused me mitochondrial damage but I don't think there is anything I can do about it now.

    I hope this link works! Please someone let me know if it doesn't.
     
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  8. Martial

    Martial Senior Member

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    fluoroquinoline class antibiotics are insanely toxic, I am surprised they are still able to be prescribed after all this time. Often for very mundane issues alike. There really needs to be awareness spread in the medical community about the dangers of this class of antibiotics. I never took it myself, and I told my friend last minute to change a prescription of cipro to another class of antibiotics with his doctor. His doctor agreed and saw no issue with it. He might have been one of the people not affected but why ever take the risk! Smh.
     
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  9. Aviva3

    Aviva3 Guest

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    Dear Ginger,

    Interestingly, my first definitive indication something was awry was when I had anaphylaxis when taking amoxicillin. Predated the anaphylaxis symptoms I had with my AD medications by a few months.... (that and lethal levels of HBP, and uneducated DR. precipitated the abrupt withdrawal). Big mess!

    As for Shortness of breath....all the time....really affects going out.

    I was just diagnosed by skin biopsies in November. I had a endoscopic work-up in October, and have met with a rheumatologist and ophthalmologist in recent weeks. Meet with big time dysautonomia specialist Nov. 5th. Confirmed idea of drug neurotoxicity.

    Next stop: cardiologist! I had irregular EKGs in last yr. In ER. Admitted once and sent home (no beds!). Now I can feel the tachycardia and my resting pulse is high. No fainting and no real POTS (HBP). I do have angina occasionally.

    I take baby doses of nortriptyline (10mg) for pain and 7.5 mg and .25 mg Klonopin for sleep. I'm not out of my depression, but I'm better....afriad to take anything. Don't take standard POTS meds like florinef at all, BP not low. I do take meds for HBP.

    I'm doing gentle yoga and a massage 3:-/wk at home, and doc just ordered PT to get me out of the house. It's just wonderful!

    My sleep is a mess....and my body is just in "acute sickness behavior mode"....no energy at all...very discouraging. Also had profound changes with skin and hair. I feel like a very old person.

    I first had real difficulty eating, digesting, peeing....better now! Brain fog also lifted (whew -- very scary). I'm still in the midst of figuring this out physically and emotionally. Huge changes!

    PS... Neurotalk has peripheral neuropathy section more focused on sensory rather than autonomic neuropathy. Big time supplements people (I'm wary about any drugs now...no telling what's in them, though I have a slew -).. DINET more @ POTS, but I can relate ....particularly to people's circumscribed lives.....

    So feel free to PM me, though no sure how it works here.....I would love to compare stories and get more incite into iatrogenic neurotoxic in general....not a lot out there!

    Your story, hard as it is, reassuring to me

    Best,

    AvIva
     
    Last edited by a moderator: Dec 27, 2015
  10. AaroninOregon

    AaroninOregon noob

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    @slysaint I had no idea there was a test for such a thing. If it tests for quinolone molecules, I assume it has to be done shortly after ingesting the quinonlones?? Or is the theory that they stay in the body of those that have adverse reactions?

    There are a couple facebook groups as @minkeygirl mentioned that I am a member of...

    https://www.facebook.com/groups/floxies/

    https://www.facebook.com/groups/191063714251094/

    there are others too, I believe.

    And the FDA has finally come up with a name for the syndrome caused by FQ's: https://en.wikipedia.org/wiki/Fluoroquinolone-associated_disability



    I never had any ruptured tendons either, but for about two months it sure felt like both of my Achilles tendons were going to rupture. Unfortunately, the majority of the docs I have run into seem to only believe that tendonitis/tendon ruptures are the only lasting side effect from quinolones.

    And there is a lot of information out there about recovery thanks to Lisa Bloomquist...

    http://floxiehope.com/lisas-recovery-story-cipro-toxicity/
     
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  11. slysaint

    slysaint Senior Member

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    @Gingergrrl
    the link works fine. thanks.
    @AaroninOregon you might like to take a look at that link too( it answers some of your questions). I've looked at floxiehope and at one of the facebook groups but couldn't find info on people who've had the tests.
    here are a couple more you might find of interest
    Fluoroquinolone_Toxicity_-_Human_DNA-add.pdf
    http://www.hormonesmatter.com/fluoroquinolone-time-bomb-mitochondria-damage/
    I'm still none the wiser where you can get these tests done though. Maybe the Gulf war syndrome support groups(there must be some out there) might have more info.........
     

    Attached Files:

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  12. Gingergrrl

    Gingergrrl Senior Member

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    I'm glad but my story is pretty sucky right now b/c I cannot breathe when standing and use a wheelchair close to 100% of the time. I've had multiple triggers but really now do wonder if the FQ molecule has attached itself to my DNA and caused mito damage.

    This is now one of the six FQ black box warnings (that was not yet a warning when I took Levaquin in 2010.) Your history sounds different than mine and I feel hopeful that you will recover.

    I had no idea that there was a test for it either. I searched for tests in 2010 and so did some of my doctors but we didn't find anything like this. The theory is that the FQ toxin stays in your body forever and damages the repair mechanisms to muscles and tendons so you cannot heal.

    I think the test would be a "smoking gun" for anyone in an FQ lawsuit or for veterans trying to prove disability from Cipro but otherwise, I think at least for now, the test would just be academic b/c no treatment.

    My right triceps tendon was close but it did not rupture, thank God. It greatly affected my entire upper body and ironically in my case, never affected my achilles tendons.
     
    Last edited: Dec 27, 2015
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @slysaint thank you for the attachment and I am printing it now to read.

    Am seeing a true autonomic specialist in a few months and hoping he will know if there is anything that can be done for FQ toxicity but I think the science is just not there yet and is covered up by Pharma and the Government b/c of how much they'd have to pay to both civilians and gulf war veterans.

    I still get Google alerts every day re: FQ issues and they are endless re: the number of innocent people whose lives have been ruined.

    ETA: I participated in an FQ research study by Beatrice Golumb's group at UC San Diego that I believe is still ongoing if anyone is interested. It is all done via the internet so you can be anywhere in the US (anywhere in the world) and do not have to travel anywhere.
     
    Last edited: Dec 27, 2015
  14. Gingergrrl

    Gingergrrl Senior Member

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  15. Aviva3

    Aviva3 Guest

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    Hi Ginger,

    I'm sorry, no idea you are in a wheelchair. You mention you will see a dysautonomia specialist (rare birds). I am in NYC and would be happy to share my experiences here (good and bad) with you. I'm stll toying with the idea of going to Vanderbilt or Mayo -- big bucks but one stop testing.

    Just a note about Gulf War Illness. When researchers finally got funded, they found that all sufferers had a gene that was unable to break down medications given prophylactically for nerve poisoning. Thus they were poisoned! Some 25 percent of service people lacked the gene. This in no way negates exposure to other neurotoxins. For me it points out what strides can be made when substantial research funds are forthcoming for odd and once-labeled "psychosomatic" illnesses.

    Wish I could be part of a gene study. No idea what's neurotoxic for me now. I just temporarily stopped my supplements to see if my pain improves (scary story about most on science-based medicine.org.). I need to identify a trusted supplier ----suggestions welcome!

    I also think the story of neurotoxic meds need far more attention. I can't find any research on the neurotoxicity of antidepressants (complicated by serotonin syndrome and abrupt withdrawal in my case). If there is anyone reading this who can relate. ....please write! As noted, stories about antibiotics only now beginning to circulate.

    So Ginger, our situations are different, but each of us was dasabled by our trust in extremely common medications. Results are also similar. So hard to wrap my head around such a systemic and crippling disability.

    I wish you theb best with your testing and treatment. Such a long haul to diagnosis! You sound wise and strong, and you appear to have at least mostly recovered once.....hope it happens for you again.

    I also appreciate all the good information offered on this thread.

    --Aviva
     
    Last edited: Dec 27, 2015
  16. AaroninOregon

    AaroninOregon noob

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    Thanks for the info. This is the first time I have seen that research paper on FQ adduct to DNA...very interesting stuff.
     
  17. AaroninOregon

    AaroninOregon noob

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    Were you able to find doctors (in 2010) that believed that FQs had caused your medical condition?

    There has to be a way to get the FQ out of a person's body IMO, as many people eventually recover...but how that is done is the mystery. I've read so many recovery stories, but many different methods for each individual to recover. I wish someone would get off their butt and figure out how to get the stuff out of our bodies (assuming it's still in there). :)

    Does your right triceps tendon still bother you? My achilles still act up but with less severity.
     
  18. AaroninOregon

    AaroninOregon noob

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  19. Aviva3

    Aviva3 Guest

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    Dear Aaron,

    Toxins can lurk about in body fat for months, but nerve damage does not recede when the toxins are gone. Jury is out about recovery: as noted, after a year I'm better in some ways and worse in others.

    I consulted about a lawsuit, but decided that fighting about anything (including the actions my boss, who just blatantly ignored disability legislation), would impair my recovery. However, recent science will support disabiliy claims -- something, but of course, I would love to see treatment to make me healthy again.
     
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  20. AaroninOregon

    AaroninOregon noob

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    I'm almost two years out since I took cipro (22 months) and I am way worse than I was after my symptoms started...the only things that are truly better are the tendonitis and parestheisa (although both still exist).

    I've though about going the route of a lawsuit as well, but I'm so fatigued that I'm more interested in spending my energy looking for treatment at this point in time.

    That sucks about your boss, and I completely understand not wanting to go the lawsuit route vs. recovery.
     

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