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Fluoroquinolones are too dangerous for common infections (article)

Discussion in 'Other Health News and Research' started by Gingergrrl, Dec 6, 2018.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I am not certain if this exact article from Consumer Reports has been posted here before and I didn't see it. A friend of my late mother's just sent it to me in light of what happened to me in 2010.

    Here is the link: https://www.consumerreports.org/drugs/fluoroquinolones-are-too-risky-for-common-infections/

    and a few quotes from the article:

    In my own case, Levaquin nearly tore my right triceps tendon and caused a systemic neurotoxic reaction that caused me to get hospitalized (for the first time in my life) in 2010. It was the very beginning of my illness and although I can never put a percentage on each trigger, I believe that at least 50% of the total damage to my body was from Levaquin. I no longer think about it on a daily basis but when someone sends me an article like this, I feel compelled to share it so no one else has to go through what I did!

    And anyone with Myasthenia Gravis, LEMS, or neuromuscular diseases should never take this class of antibiotics. It is also not FDA approved for children under 18 but is often given any way.
     
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  2. Mary

    Mary Moderator

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    @Gingergrrl - I'm really glad to see this, though I think it will be a long time before doctors pay any attention. I think it took 10 or 15 years after they discovered that most ulcers were caused by h pylori for it to become common knowledge in the medical profession.

    I take ABX as little as possible but have had doctors try to prescribe them twice for a UTI in the last 7 or 8 years. Each time I refused. One argued with me when I tried to tell him about potential tendon damage, completely dismissing my concerns (but I still wouldn't take it) and the other just shrugged like it didn't really matter - she wasn't impressed with what I said, but did give me a different drug. And the older safer drugs worked just fine. One of my sisters had tendon damage from a fluoroquinolone.
     
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  3. rel8ted

    rel8ted Senior Member

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    As soon as I saw that post, I thought of your story. I am very afraid from what I am seeing from other MG patients that docs are somewhat oblivious to this. Always, always, always be ready to advocate for yourself. It took about 17 years to finally get an MG diagnosis and I can tell you that when I was prescribed Cipro in that period, it was not a good thing, but we couldn't understand why back then. There seems to be almost as much ignorance in the medical field about LEMS and MG as there is about ME/CFS. @Gingergrrl and I are apparently extra special. I always feel like the eye rolls happen as soon as I walk in the doc office - here comes the high maintenance patient again....
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I agree and doctors still hand out free samples (from Pharma reps) of FQ antibiotics as if they were candy. There are now at least 5-6 different FDA black box warnings on them and the article didn't even mention that they are causing retinal detachment. They are given to babies in the form of eye drops and ear drops and FQ's are even given to dogs by vets!

    Good for you.

    I remember you telling me about that and I hope she is fully healed. No matter how much PT I have done, my right arm will never be 100% like it was pre-Levaquin.

    I also want to clarify that I am NOT anti-medication whatsoever especially since I have done 2 yrs of IVIG and almost 1.5 years of Rituximab. I just believe strongly in "informed consent" and making a calculated, informed decision. By the time I decided on IVIG & Ritux, I was so ill, there was nothing left to lose and I had two excellent doctors who thoroughly knew my case and felt I was a good candidate (and they were right). I knew the potential risks and I accepted them.

    Vs. back in 2010, I was healthy and was given Levaquin for a throat infection with absolutely zero warning of the potential risk factors and easily could have been given an alternative. I had no idea that an antibiotic for my throat could destroy a perfectly healthy arm and alter my immune system forever. I support FQ antibiotics in life or death cases and when my mom had sepsis and was near death, I signed the consent to give her Levaquin and whatever else was needed. But for a minor throat infection it is like using a nuclear bomb to kill a fly.
     
    Mary likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    I agree that the majority of doctors are absolutely oblivious to this.

    :thumbsup:

    Do you have an official MG diagnosis? The last time I talked to you, you had a diagnosis for ocular MG if I recall correctly. What happened when you took Cipro? Did it weaken your overall muscle strength? The big risk for patients with MG and LEMS who take FQ's is that it affects their breathing and can be fatal in worst case scenario.

    I don't know if we're extra special but I believe if I was ever given another FQ antibiotic, that I would not be capable of recovering from it. I wish my Medic Alert bracelet said "allergic to FQ's" but there was not enough room to fit it. It says, "anaphylaxis risk" so if anyone who sees it bothers to call Medic Alert for my records, they will see that is on the list. I did not actually have anaphylaxis to Levaquin in 2010 (vs. a neurotoxic reaction) but it is the simplest way to insure it will not be given to me if unconscious. (Edit: I did have near constant anaphylaxis in 2015 to food and dyes but this was a separate issue).

    And I agree (from my experience the last 5+ years) that anything not understood by traditional medicine is treated with ignorance and contempt. I thought it was just ME/CFS which was my diagnosis for 3+ years but I experienced the same thing with MCAS, and with my unexplained muscle and breathing weakness (before we knew what it was). If I did not find my main doctor (through PR in 2014), I don't know where I would be today.
     
    Mary likes this.
  6. andyguitar

    andyguitar Senior Member

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    Just been reading about this drug. Never had it myself. Never would unless I was at risk of death. Scary side effects.
     
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  7. msf

    msf Senior Member

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    As someone with ME that was triggered by a Yersinia infection, I have a slightly different take (whilst fully acknowledging how awful fluoroquinolone toxicity can be): if I had taken a short course of Cipro at the start of my (then mild) illness, I may have saved myself not only a severe illness, but also the need to take fluoroquinolones for much longer and at a much higher dose to try to get rid of a chronic infection rather than an active one.

    In the long term, we need all the antibiotics we can get: once people start dying of minor cuts again, they won´t care about the possible risks of fluoroquinolones. What is really required are simple ways to avoid the toxicity associated with antibiotics: there are several promising ones for both fluoroquinolones and aminoglycosides, two of the most toxic families. But these have not seen major trials, due to lack of commercial interest (and possibly a desire for drug companies not to see these done). Also, patients don´t just require their doctors to give them the whole picture, they require doctors to actually be aware of this themselves; there is no good reason, giving the weight of the evidence, the toxicity of fluoroquinolones, and the cheapness and lack of toxicity of magnesium or vitamin e, why these supplements aren´t prescribed (or at least advised) with every course of fluoroquinolones.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    I agree with you @msf and I remember talking to you about this (probably about four years ago!) when I first joined PR. If a short course of Cipro was the proper treatment to crush your Yersinia infection before it ever led to ME/CFS, then 100% you should have had it. I believe in cases of sepsis, anthrax, or illnesses where FQ's antibiotics are indicated, then they should be given.

    What sadly ends up happening, is that these antibiotics are given out like candy for minor throat infections, sinus infections, skin infections, and even as a prophylactic such as someone is traveling to an area where they "might" get sick or they need an antibiotic prior to surgery.

    There are MANY alternative antibiotics that work equally well but they are given an FQ because the doctor is either being financed by Pharma to give the samples or to prescribe, or the doctor just doesn't know any better, or it is the only choice on the hospital formulary, etc.

    I know of two real life cases (from when I participated in the FQ on-line community when I was floxxed in 2010) that were horrifying. One was a (then) 16 year old girl who was given Levaquin and had eight tendon ruptures. It is not even supposed to be prescribed to anyone under 18 yrs old. She had endless surgeries and was not able to finish high school and was incredibly ill. Another case was an elderly woman who was given Levaquin for a minor infection and it tore her achilles tendons and her hip tendons (cartilage?) and she never walked again and was placed in a nursing home and passed away. Not to mention the number of people with no prior mental illness who became floridly psychotic from Larium (another FQ given as a prophylactic for Malaria).

    I totally agree that the doctors cannot provide the whole picture when they are not even aware of it themselves. Many more are aware of it now but when I was injured in 2010, Fluoroquinolone Toxicity Syndrome was given about as much validity as ME/CFS. I saw one Neuro and brought several serious journal articles and he refused to even look at them. No one knew (at that time) that it strips the body of magnesium and that it can be lethal for people with myasthenia gravis, or cause cardiac issues, POTS, retinal detachment, psychosis, tendon rupture, etc.
     
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  9. msf

    msf Senior Member

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    I agree with almost all of that, but I was prescribed cipro as a broad spectrum antibiotic due to getting a GI illness in an undeveloped country, but didnt take it because I was worried about the tendon toxicity, so again I have a slightly different take. Of course, it may have saved me several years of severe illness but may have caused several years of servere illness for someone else, so it's positives and negatives as a broad spectrum antibiotic need further study too.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    There is a research study from UCSD by Beatrice Golumb's group. Here is the link in case you are interested in participating: http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html

    It is purely an on-line study and you do not have to travel (although I can't remember if you have to be in the US). I participated in it several years ago. I believe she is also studying Gulf War Syndrome if I remember correctly.
     
  11. rel8ted

    rel8ted Senior Member

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    My official diagnosis is "seronegative MG." He said he believes that it is limited to ocular in spite of me taking a recording of my voice being affected and me having muscle weakness that has resulted in being able to lift my right arm on more than one occasion. It was strange, like he thought I should be more hopeful if he said I wasn't generalized, but I really think part of it is that he is an older neuro and I am a complex patient that requires thinking out of the box. Also, to his credit, he did say that with all of the reactions I have had to lesser meds, including a Mestinon trial years ago, he was hesitant to try any big guns. I feel like unless my breathing becomes an issue, that is probably a good path.

    If another way of saying that is "Jell-O legs". yes.
    My dad's wife also brought up a few weeks ago that it seems too strong for elderly people, a lot of her friends apparently have had bad stomach issues from taking it. I know that's not the same, but I thought it was interesting.

    Yes, EDS, POTS, MG, LEMS, ME/CFS. My dad's wife has a great-granddaughter with some sort of rare disease plus Autism. She is the sweetest thing, her and my dad just rave about her all the time (they are in another state) and she HAD a wonderful doc who specialized in pediatric rare disease, but he has retired (he was about 80). I often think of what may be in that child's future if they don't get another good one.

    I have been thinking about getting one, but unsure how to choose what goes on there. It would have to be a Medic Alert WWF belt to fit everything I need.

    I could use some input if anyone has experience....
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Thx for reminding me. I knew you had a diagnosis of ocular MG but could not remember if you were diagnosed with MG itself. Which autoantibodies were you tested for when you were considered to be "seronegative"? Apologies if you have already told me this.

    This makes sense to me. I did not do well when I tried Mestinon (at a micro low dose) in 2014. I do not have MG vs. an atypical form of LEMS (and still not sure if I had it back in 2014 although I suspect this is when it all started). Breathing was a major issue for me (as you know) which completely reversed itself with IVIG & Rituximab. And yet I could not tolerate an 1/8th of a Mestinon which made my breathing worse.

    I never had leg weakness vs. upper body weakness (lungs, diaphragm, arms, neck, etc). That is part of why my case is so atypical.

    Definitely tell your dad's wife that FQ's antibiotics are not supposed to be prescribed for elderly people (outside of life threatening situations of course).

    I hope and pray that she will be able to find another good specialist who takes the time to understand her unique case.

    I'm now on my second Medic Alert bracelet b/c my Endo said that it must say "Secondary Adrenal insufficiency, needs Cortef". He said I do not have primary adrenal insufficiency and once I am finally tapered off Cortef, I will not need this on a bracelet. But at present, if I were in an accident and unconscious and no one knew that I took Cortef, it could lead to a fatal adrenal crisis. I've successfully tapered from 15 mg per day to 10 mg per day (but it has taken me six months :eek:). At this rate, I have another year to go but I hope my Endo allows me to speed up the taper.

    My bracelet also says "Anaphylaxis risk" (and then when they call Medic Alert it lists everything I am allergic to which includes FQ antibiotics, IV contrast dyes, food dyes, aspirin, and other stuff). My MCAS doc said to write "mastocytosis" on the bracelet vs. "MCAS" or "mast cell activation syndrome" b/c more doctors will know what it is and the Masto guidelines for meds are the same in both conditions.

    I wanted to write "POTS" but no one would know what it is and "Postural Orthostatic Tachycardia Syndrome" would not fit. So instead I wrote "Dysautonomia" hoping someone would at least know what this meant.

    My bracelet does not say anything about (probable) LEMS b/c my doctor did not determine this was relevant in my case until after I had already made the second bracelet (which is much clearer than my first one).

    Like you, I would also need a WWF belt to fit everything LOL :_

    I also wanted to add that reading your post made me realize that I never put the bracelet back on after the nurse took it off at my Rituximab infusion on Mon (b/c it gets in the way of the IV). So I just spent about 10 min getting it back on by myself only to realize that I cannot have it on tomorrow morning b/c it is metal and I am having my neck MRI. I have tried to no avail to get it off by myself :mad::mad::mad:. But my best friend is taking me to my MRI tomorrow and she will help me to get it off and if she can't get it off then I will ask the technicians at the Imaging Center. I wrote myself a HUGE note next to my purse to take off the bracelet prior to the MRI :eek:!
     

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