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Fluoroquinoline Toxicity and TMS. PLS READ

Discussion in 'Support Subforum' started by Celestialstar, Mar 7, 2018.

  1. Celestialstar

    Celestialstar New Member

    Hi everyone,

    I had a massive adverse reaction to Levaquin, a fluoroquinoline antibiotic, 2 years ago. Literally overnight, my health fell apart. I had raging tendinitis and peripheral neuropathy, both known side effects of the medication, like overnight. I saw a neurologist who told me that FQ drugs are the only antibiotic that can cross the blood brain barrier and that they likely did so, damaging the part of my brain that controls my nervous system.

    The next 1.5 years would be surreal- new issue after new issue. Mostly short lived but unbelievably strong, out of nowhere and scary. Trigeminal neuralgia, unexplained internal growths (3 on organs- all turned out to be benign but the process was incredibly terrifying as we had to 'wait and see' for three months), early menopause (I was 38), peripheral neuropathy, unexplained internal bleeding (source never found), gallbladder dysfunction and pain, suspected CSF leaks from the spine, temporary unexplained deafness in one ear, tinnitius rashes, neck locks that lasted 4 weeks... and the list could go on and on. The most long lasting has been debilitating tendonitis because it prevents me from doing things I love- playing tennis with my family (they all play competitively and regularly) and with my friends (like I used to do). It prevents me from doing yoga or gardening, or even cooking because stirring starts to hurt after a while.

    Its hard to know why the pain continues. Fluoroquionoline Toxicity (FQT) is most absolutely why it started but does it continue because of some unseen cellular problem or is it TMS? Are FQs kind of like CTE in football players- scans all come back clear but something is broken at a cellular level? I just don't know and the countless doctors I have seen have been sympathetic but can't seem to help me.

    In the beginning, my legs were the most badly damaged but they have mostly recovered. I walk daily and keep trying to push to use my arms again - to play tennis, to do yoga, garden... whatever. Throughout all of this, I have tried to keep life normal. I walk my dogs for 45 minutes daily, do kids carpool, try to live my life happily... In December, a PT convinced me to do an MRI on my arm to see if something permanent was wrong (I really did not think there was but with no other explanation, accepted there might be). The MRI revealed no structural issues with my right arm- just chronic muscle strain in my biceps and tendonitis (tennis elbow). No tendinopathy (which FQs cause) and no big tears. WHEW. Two years later I am so ready to push past this. I believe 110% that TMS is involved but have no clue if this is the whole story or not.

    The FDA cites that of those people who do recover from an adverse reaction, the timeline is 2-9 years on average. I will have my two year anniversary next month. Some never recover- and no ones knows why.

    I have to ask myself- if my legs can recover (mostly), how can this be cellular? I can't figure it out. I am so over it. I just want to live my life normally again. Any advice is welcome.
  2. sam908

    sam908 Peer Supporter

    Have you by any chance been visiting those websites where Levaquin users have been posting horror stories about the side effects of this drug and the supposed damage to their bodies as a result?
  3. Celestialstar

    Celestialstar New Member

    Hi Sam- I did visit those at the beginning but quickly stopped. I instead joined FloxFit, a FB support group of folks focused on getting better and continuing to exercise.

    There is no supposed damage- the damage is quite real. I played tennis one day and the next my Achilles were sticking out of my legs, hot to the touch. I was swollen everywhere. My liver stopped working right and so did my gallbladder. I had cognitive dysfunction - word replacement issues.

    The phrase 'supposed damage' is misinformed and scientifically inaccurate. The FDA web site can provide you with additional information on the mechanism of damage FQs cause if you would like to do some research.

    I believe this was to be a support forum but that statement made me angry- just another doubter. If I understood your comment incorrectly, or if you meant it differently, please advise. Otherwise, please move on. I came here to get better, not defend myself.

    The purpose of my thread was to introduce myself, and find other folks who may have had experience with this. Ultimately, I believe my cells have healed but that this is now TMS. But it is difficult and the seed of doubt is there. I am looking for support in this forum.

    Wow- this comment truly upset me, wasn't encouraging or thoughtful at all and made me feel completely unwelcome.
    Last edited: Mar 7, 2018
  4. sam908

    sam908 Peer Supporter

    I'm afraid you misinterpreted my comment. I am presently taking Levaquin for an upper respiratory infection and found myself reading through some of the experiences on those websites. I quickly signed off, as I don't think it's good for one's mental hygiene to read these accounts. If the drug were all that bad, and had no redeeming qualities, it would have been taken off the market.
    Last edited: Mar 7, 2018
  5. birder

    birder Well known member

    Celestialstar, you have absolutely come to the right place for healing from those devastating injuries. Long-term damage from that class of antibiotic is well documented and widespread. Now that part of your healing has occurred, it's appropriate to ask yourself what might be holding you back from a full recovery. Those were, and are, fearful injuries to your body. Could fear be playing a role in your continuing symptoms? I believe you'll find the answers here, and possibly the very first place to start would be Alan Gordon's pain recovery program, a free link right on this site. It has wonderful strategies for rethinking how we react to pain, fear, and anxiety.
    A warm welcome to the forum!
    plum likes this.
  6. Celestialstar

    Celestialstar New Member

    Hey Sam - I had to chuckle when I read your comment. I said the EXACT same thing when I was taking it. Wow- it's like listening to me those years back. I also looked at those sites and looked down upon them. I found them to be sensationalistic and kind of melodramatic. Negative people looking for someone to blame. Not my speed at all then and still not my speed. Clearly, if something were that bad it would not be available. I chuckled at that and the irony of that type of statement in this type of forum. FQT has been proven, and acknowledged by the manufacturers of the drugs and the FDA. TMS has not, yet you believe it.

    I wish you the best but FQT is part of my journey and, to your point, it may not be good for your mental hygiene to read about that topic while you are taking the medication.
    Please consider this a spoiler alert as I will continue on my path below discussing the topic and consider leaving the thread. I hope the Levaquin knocks out your illness and wish you all of the best in your journey, Sam. Best to you.
    birder likes this.
  7. Celestialstar

    Celestialstar New Member

    Thanks so much Birder. I appreciate it. Yes, well documented. I received great information from two separate neurologists who explained that the mechanism of damage is well documented and understood but the 'how to fix it' part has not been studied. The issue has been widespread enough that the University of California at San Diego has launched a study on patients who have had issues with fluoroquinolones and I was a participant. I am interested to see how those results fair but that might be a couple of years out.

    Fear is definitely a significant player. I ended up going to a neurologist who partnered with a geneticist to try to get to the root of all of this. Through extensive genetic testing, they discovered that I have a gene for a type of muscular dystrophy and that it was partially expressed. Because FQs are such power players and the only class of antibiotics to enter the brain, any type of adverse reaction can be signficant enough to alter your genetic expression. They hypothesized that the gene was likely 'turned on' by the adverse reaction. They also hypothesized that changes in genetic expression are part of the reason that FQ issues vary so widely - any shock to the body can leads an expression change , and we all have different genes so it's a higher risk of that cancer you have a gene for over there and for me, the increased risk of full blown muscular dystrophy. While they were at it, they informed me they are adduct DNA- meaning they make a tiny little tag on your DNA, slightly altering it. What in the heck did that mean? This information was just terrifying because it was unclear and inactionable. We all have ugly genes but we sleep well at night because we don't know what they are. Being armed with this knowledge was a recipe for worry. I wanted to sit in the middle of a room, put my fingers in my ears and sing 'LA LA LA LA LA' at the top of my lungs to block it out. :)

    On the personal note, my story was received with either wide eyes or narrowed ones, a la Sam above. Word got out and I was approached by probably 7-8 people who told me their horror stories with the drug but that they never reported it. I felt somewhat better in that is isn't really all that rare (my neurologist is a guy who cleans up the mess from these types of drugs and told me he thinks the reported number of 1% is more like 20%... it's hard to connect today's arthritis to something you successfully took one year ago for a UTI). But still, few people understand the actual science or the data behind it and, as a rule, people don't embrace what they don't understand. And, as you can see in the thread, who would want to embrace the thought that they very medicine you are taking or your child is taking could be harmful? Not good for mental hygiene indeed.

    So I believe I understand what is bothering me but I just don't know how to be unafraid of it. I know I have come a long way. I force myself to be productive ... but I just can't seem to cross this last hurdle with my arms. I am so unbelievably sad about it. So frustrated. I miss my old life so badly. I hate watching my friends do the very activity I can't. Two years later, they still invite me all of the time... just in case. Oh I am just so ready to be done with this. This is insanity.
    Time2be and birder like this.
  8. MWsunin12

    MWsunin12 Beloved Grand Eagle

    Congratulate and love yourself for coming along as far as you have.
    I've learned that the subconscious will magnify where you put your attention.
    Yes. If one reads the PDR for studies on what it takes to get a drug into the market, they would probably be appalled.
    For example: antidepressants only need a 7% success rate. And, the pharmaceutical companies will test 1000's of people to get to that 7%.
    I'm not saying they aren't helpful for some, but with 1 in 6 Americans on an SSRI, you've got to wonder who truly needs what.

    I do believe that you can recover fully. You already know all the bad facts and "what if's." None of those facts will change the way you feel.
    You have done your due diligence.

    Perhaps read Dr. Gabor Mate's books or watch him on YouTube. When it comes to how the mind determines the course of physical realities, even in a proven and diagnosable disease, he really has great insight....mostly into how these things are NOT written in stone.

    Cry about your arms. Let the emotion out. If your legs can pretty much recover, your arms will follow suit.
    Read Anita Moorjani's book, too. She came back from a coma and stage 4 cancer because she realized that healing was right there on the other side of fear.

    I think you're amazing!! Best wishes. Sending all good thoughts.
  9. birder

    birder Well known member

    It's funny - not in a ha-ha way - how TMS targets the very activity that feels like our primary identity. For you, it's the pain in your arms preventing you from playing tennis as you used to. For me, it's pain in my feet and legs keeping me off the trails I used to inhabit. Oh, how I hear you when you talk about how terribly you miss your old life! But what if we could learn to live in our present lives, just as they are, with their sorrows and their joys and their challenges? This is the stuff I'm having to work the hardest on, because I look back, and look forward, and grieve. You won't find a quick fix or an easy journey here. But if you take it on, it will open your eyes and even your heart.
  10. birder

    birder Well known member

    Oh, and by the way, you're a badass for kicking FQT's butt!

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