Communicating With Doctors about Fluoroquinolone Toxicity

Listening Dr Picture

As soon as I realized that a pharmaceutical had hurt me and that there was nothing that doctors could do to cure or fix me, I stopped going to doctors. I figured that they could hurt me and they couldn’t help me, so I wasn’t going to consult with them any more. I was angry with the system that hurt me. I was angry with the doctors that prescribed these drugs. I was angry with the doctors who told me that my symptoms couldn’t possibly be from the Cipro that I took. I figured that they were wrong (they were, the Cipro caused all of my problems), that they didn’t know anything useful (I don’t know because I didn’t ask), and I opted out of the system.

I don’t think that my reaction was entirely unreasonable. The anger and bitterness probably weren’t helpful, but I don’t think that they were unwarranted. It made me pretty angry to get seriously damaged by a pharmaceutical then dismissed by doctors when I asked about the possibility that the Cipro was what was making my body go hay-wire (it was). Opting out of the system that caused me harm seemed like a fairly reasonable and rational decision, especially since alternative medicine, acupuncture and supplements, were helping me.

But now I’m starting to see that I didn’t help the system at all by opting out of it. None of my doctors have any clue what Cipro did to me. They have no idea that it caused me to barely be able to walk for several months. They have no idea that it sucked out all my energy so that I could barely stay awake through the day. They have no idea that it caused me to lose important parts of my mind – my memory, my reading comprehension, my ability to connect with other people, my ability to communicate verbally, etc. They have no idea that Cipro caused a syndrome in me that did severe damage to all systems of my body. They have no idea because I didn’t tell them.

So I can’t really blame them for not knowing, for not noticing my pain. I can’t blame them for not doing something about the travesty that is the system that let fluoroquinolones be a first line of defense for minor infections, if they don’t know about the consequences of their actions. I can’t blame them for incorrectly assessing the frequency and severity of adverse reactions to fluoroquinolones if a sizable portion of the population who has an adverse reaction to a fluoroquinolone does exactly what I did, opt out of the system and fail to communicate with them. They have no idea. And that’s partly my fault.

Even if I had felt inclined to continue to go to M.D.s for treatment, I suspect that it would have been an uphill battle. The system isn’t set up to recognize, or to treat, issues like Fluoroquinolone Toxicity Syndrome / Floxing. First off, “Floxing,” or even Fluoroquinolone Toxicity Syndrome, isn’t even in the doctors’ handbook of recognized diseases/syndromes/things. So, if it doesn’t have a NAME, it’s not going to be recognized. Second, it would have been a waste of everyone’s time and energy for me to keep going back to the doctor with each new symptom, and new ones kept popping up for a few months, just to let them know, when there is nothing that they could do about any of them. The Western medical system is set up to name and fix things. Naming diseases and fixing people is important, and I want both, but when neither are available really bad things tend to be done – labeling patients as difficult or crazy, or, worse, throwing random treatments at them with the hope that they’ll get better – though sometimes they get worse as a result of the treatments. I didn’t want either of those things so I didn’t go back to my doctor. Seeing as I’m largely recovered, I think that my strategy was a good one for my health. However, it kept doctors from noting what was going on with me and thus, it didn’t get put on their radar that change is necessary.

I should tell them. I should tell them my story. We should all tell our doctors our stories. Not to get an answer from them. They don’t have the answers. We should tell them just so they know. So that they can know about the devastating effects of the drugs that they prescribe. If they know, maybe they’ll change their actions. Maybe they won’t prescribe fluoroquinolones in inappropriate situations. Maybe they’ll recognize the symptoms of Fluoroquinolone Toxicity Syndrome / Floxing in someone else so they will at least know how to avoid doing more harm to that person (they can avoid NSAIDs, steroids and, of course, other fluorouqinolones in the future for that person).

As for how to do this, I think that Dr. Rob has some valuable advice in this post – http://www.prohealth.com/library/showarticle.cfm?libid=18247 . Approach the good ones like they’re humans, they are, and leave the jerks behind (they’re humans too, just not humans that you should deal with).

So, it’s now on my to-do list to respectfully and kindly talk to my doctor about what I went through and how she may avoid putting another person through similar pain. I wonder if Kaiser will waive the co-pay for an informational session where the information goes from patient to doctor. I doubt it. It’s worth asking though.

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15 thoughts on “Communicating With Doctors about Fluoroquinolone Toxicity

  1. Tee August 5, 2013 at 11:57 am Reply

    great post, Lisa . . . I find that most docs are unwilling to hear that a drug that they consider a valued part of their arsenal is crippling people. If they can deny it, they will. Or, like anyone else who hasn’t been floxed, they will find it impossible to comprehend the breadth and depth of these reactions. . . “oh, your tendons are a little sore for a while” . . or “good thing these reactions are so rare” and that old chestnut cutting you off in mid sentence with “these drugs save millions of lives!!!!” – but it doesn’t mean we should throw out the baby with the bathwater, too. There are doctors out there who absolutely do know that these drugs are that dangerous – mostly these are doctors that have already divorced themselves or been divorced by the orthodox medical establishment by practicing integrative medicine or using modalities other than drugs when appropriate. Anybody in any field is going to be hamstrung by an overly developed ego and a need to ‘be right’. The doctor (Semmelweis (spelling?)) who claimed surgeons should wash up before surgery to help limit patients dying (from bacterial infections which were not understood at the time) was ridiculed right out of medicine. I doubt human behaviour has changed much since then.

  2. Debs August 5, 2013 at 2:57 pm Reply

    I too have been through the ” banging my head against a brick wall” scenario so many times, and have had to take time out to regroup, ( I didn’t want to add a nervous breakdown to my floxing ) so I have decided I must try and find another way rather than verbally to try to get my point across, as Drs just will not listen … period.!

    What I have decided to do is fill in a RxISK report ( RxISK.org) to give Drs , this also generates a report to send to your countries drug regulator. At least Drs know you are serious, that there is something in the system, ( If they don’t just discard it,and we know it happens ) BUT, if they know you are willing to actually take action and report on the drugs they prescribe for you, they may think twice and actually do a bit more research next time .

    ( we can but
    hope ! )

    It made me feel better anyway .

  3. Jan Bush August 5, 2013 at 3:32 pm Reply

    I like the way you’re helping people with these posts. It is a worthy thing to be doing!

  4. Charles George August 6, 2013 at 7:42 pm Reply

    I told my GP and she took the Dear Doctor letter I gave her. I did not seem like she would read it. To my surprise, I asked her about it today and she did read it, gave it to others, and even told me a story about a patient she knew that had to get 3 surgeries due to an FQ he got for a UTI! We can make a difference and I do like the comment about bringing in the RxISK report and the MedWatch report so doctors know they can be reported on.

  5. Anna Zolotnitskaya August 11, 2013 at 12:57 pm Reply

    Dear Lisa, FQ toxicity is not rare. It might be rare to cause permanent disability but it is most definitively not rare. I am looking to connect with a pharma lawyer who works with FDA. I will explore all possibilities and will try to reach to FDA officers dealing with this department. My goal is to change the way these medications are prescribed. I am a pretty stubborn girl…

  6. Kat December 14, 2013 at 6:29 pm Reply

    We do need to tell our stories. However, without a doubt it will be an uphill battle.

    Doctors are very much invested in the system. In fact, medical schools work very hard at curtailing critical thinking skills. They do NOT want to change the status quo and doctors can run into a lot of problems if they challenge standard protocol.

    The very fact that there are lots and lots and lots of natural treatments for everything from UTIs to cancer is threatening to current conventional medicine. The truth is our bodies are stronger if we do NOT use man-made chemical medicines to treat illness. Conventional medicine is best when treating broken bones and other acute problems. Many of our chronic illnesses which have become so common are CAUSED by the drugs and procedures recommended by the doctors. Their nutrition advice has caused so much suffering. Medical mistakes, medical procedures, cancer treatment, and drugs combined are the number one killer in this country.

    But there is so much money to be lost if people (and doctors) begin to recognize this.

    I’m willing to share my story, but i am not willing to go back to doctors who either call me a liar or mentally ill when i tell them of the problems i face. My fear is that with the “Affordable Healthcare Act” coming into place, i will be forced to have certain “preventative” healthcare like vaccines, medicines (statins in particular) and mammograms which i strongly oppose. The AHA is NOT affordable, BTW. We will be paying an additional $1200/year for my husband’s coverage – worse coverage although he now has LOTS of prenatal care on his plan.

    I’ve opted out of the current conventional medical programs and i will not return.

    • Lisa Bloomquist December 14, 2013 at 6:53 pm Reply

      I agree, Kat. Unfortunately, I agree. It’s sad that neither of us trust the medical system any longer. I believe that I will be healthier and happier if I opt out entirely. It sounds like you’re in the same boat. What a sad, sad, strange situation.

      The egos of Doctors stand in the way of change in the medical system more than Congress. And that’s saying something.

      I hope that erosion of medical freedom is something that I perceive more than objective reality, but I do find it to be quite frightening.

      On one of my posts on Collective Evolution, a guy made some comments about how the “health care system” is simply an oxymoron, and that it actually has nothing to do with health. It’s purpose is to prop up the economy and keep people in hospitals, universities, insurance companies, the government, etc. busy and thinking that they’re doing something. The whole system revolves around their egos.

      I’m going to stop before I sound like a conspiracy theorist or a crazy person. Farewell Matrix.

  7. Phillip allen December 17, 2013 at 1:06 am Reply

    2 weeks ago today I started a 7day course of cipro… From day three things stared to go wrong, first came tiredness, second confusion and unsteady on feet, third sore aching joints which have developed into tendonitis. I’ve been back to the Dr today who indeed is blaming this solely on the cipro and I am now on anti inflamatories and crutches for however many days, weeks or months for tendonitis to subside.

    • Lisa Bloomquist December 17, 2013 at 9:57 pm Reply

      Thank you for your comment, Philip! I’m glad you found FloxieHope and I hope that you find help in the recovery stories!

      Most people don’t do well with NSAIDs or steroids after they have suffered from an adverse reaction to a fluoroquinolone. I would avoid both. NSAIDs (ibuprofen, asprin, etc.) are on the “don’t take” list because they have a carboxylic acid molecule on them just like Cipro does. The carboxylic acid molecule likely turns into a poison in us because of acyl glucuronidation – http://www.chemweb.com/journals/journals?type=issue&jid=13892002&iid=12003 There are other similar articles in the Links and Resources section of this site. The articles are really difficult to understand and I have yet to read most of them the 17 times that will be necessary for me to understand them. The thing that I think that you should pay attention to is that a lot of people suffering from an adverse reaction to FQs have trouble with NSAIDs. For an anti-inflammatory, I have heard good things about tumeric and cercumin. If you’re looking for an OTC painkiller, I have tolerated Tylenol alright (but be careful with it as it is hard on your liver). As for why people avoid steroids after they have been Floxed, it is because they further weaken and damage connective tissue. The Cipro has already damaged your connective tissues, steroids can make things worse. Here’s a little post I found about that – http://www.surfacehippy.info/cortisonedangers.php

      I took both NSAIDs and Predinsone (a steroid) early in my floxing and I recovered. Please don’t take my warning/advice as something that is scary or that leads you to think that you are doomed. I would research some alternatives if I were you though.

      It gets better. It’s trite, I know, but hang in there.

  8. linda December 17, 2013 at 9:28 pm Reply

    Dont take anti inflamatories. Will worsen ur condition. Avoid all steroids and pray hard.

  9. Phillip Allen December 22, 2013 at 3:23 am Reply

    Hi Lisa & Linda,

    Thanks for both of your comments. I was given the NSAID Naproxen not sure if that has the carboxylic acid molecule or not, I skipped taken it today and my 6pm was in a great deal of pain. Also using paracetamol for pain relief. Have done some research and i’m taken Magnesium, co-enzyme q10 and be vitamins. Will look through the pages you have suggested over the next few days.

    • Lisa Bloomquist December 24, 2013 at 11:42 pm Reply

      Hi Philip,

      Everyone’s body seems to be different in how it reacts to FQ toxicity. My reaction began when I started taking NSAIDs (and the research about the carboxylic acid molecule forming acyl glucronides makes sense out of that), so I intend to never take them again. But other people seem to tolerate them alright. Basically, we’re all flying blind and trying to give each other the best advice we can, but you should always take into consideration that I’m not a doctor and neither are the other people who comment on here, and that we’re just sharing our personal experiences and lessons learned. You should listen to your body before you listen to me, please. If NSAIDs are necessary to make you feel better, well, I’m glad that they help you! Many Floxies have bad experiences with NSAIDs, but everyone is different. It’s frustrating. But don’t feel bad about taking an NSAID if it makes you feel better. It made me feel worse, but that’s just me and I’m not you.

      Sorry for the vague answer and I hope that you are having a good holiday season!

      Lisa

  10. Lee January 16, 2016 at 8:12 am Reply

    Lisa.
    Now that you have recovered are you again able to take NSAIDs?i am really worried about what painkiller I can use!codeine based ones also give me some other concerns!Mainly my hope is that once I am recovered I would once agin be able to take NSAIDs as they really worked for me before!

    • Lisa Bloomquist January 16, 2016 at 2:39 pm Reply

      Hi Lee,

      I have not had a NSAID since 2011 when I blew up. I had some pelvic pain about 10 months ago that was really horrible. I was able to take some Tylenol/acetaminophen without trouble, but I really hated taking it. Kratom is an herbal painkiller that some people swear by. It helped me. Kava also helped, because it calmed me down. Relaxation and meditation techniques helped too. If you need serious painkillers, opiates are safe for floxies. They have their own consequences though.

      Regards,
      Lisa

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