Tom’s Story

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*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments. 

Tom posted his story on one of the facebook floxie support groups. He gave me permission to put it up on Floxie Hope. The info is in FB post style, not a narrative. I hope that it still helps – and that it gives you hope for recovery.

Tom’s Story –

This is pretty much my year anniversary of being floxed. I took my 9th and final pill on 07/09/13. I lost my legs three days later. Everything else went after that. My 27 yo girlfriend had to put diapers on me and change them because I had zero leg strength. I was trapped in my upstairs bedroom for a couple of months, because even when I was able to hobble to the bathroom, my legs were far too weak to manage the 8 steps down to the living room. All this while I learned things, tried things, and made some very right choices (a rare thing for me), thanks for folks like Teddie Miller and Mark Girard. I also spent a ton of money on a lot of supplements that proved totally unnecessary, but oh well. I started to seriously recover in September and just got progressively better since. I went from a Cipro Victim to a Cipro Victor. You will as well. Although I had the full syndrome, my worst problem was the tendonitis. Upon discovering I was floxed I IMMEDIATELY went on a virtually food free diet. LOL. I cut out EVERYTHING. I also had to contend with Candida at the same time. So, zero sugar. Not even natural sugar. I just ate vegetables and some organic meat. I had the weight to spare, and lost a bunch. drank tons of water, and went on the Isagenix system. I’m NOT a salesman or distributor of Isagenix, so this isn’t a plug. But their products really came through for me. I took it very easy for a long time. Then I started slowly pushing myself. Walking a little bit more every day. Some days I pushed myself too far and regretted it. But I kept going. I used exercise bands on my arms and legs and those REALLY helped. After a couple months of this routine, the recovery really kicked in and I started rapidly improving. During this process, various medical issues I had even years PRIOR to being floxed either improved or went away all together.

Regarding Isagenix – It’s healthy stuff. Full body cleansing and whatnot. I got on that immediately when I figured out I was floxed. Fast food is not good for anybody, floxed or otherwise. But I’m a junkie too! Once I recovered a lot of my old habits came back.

my leg pain, at its worst, was quite severe. It was across every inch of my legs, also arms, back, etc. My legs only seemed to have it the worst because they’re weight bearing. It was muscles, tendons, skin, you name it. I experienced fast muscle loss in my legs as well.

I did a LOT of things. Diet, rest, the right exercise when appropriate, and kept a positive frame of mind.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

10 thoughts on “Tom’s Story

  1. Ruth Young July 14, 2014 at 9:14 am Reply

    I had that fast muscle loss too, but not as severe as yours and it came back pretty quickly for me. I had terrible eating habits prior to being floxed and I’m sure that contributed. Cipro chelates magnesium and I don’t think I had much to spare. I’m guessing a blood test at the time would have revealed low magnesium levels even before I took the Cipro, so I was in seriously poor health. I can’t say, “I was perfectly healthy before I took Cipro.” That would be a lie. Like you, in some ways I’m healthier now. My hair is growing really fast and thick. It was falling out like crazy before I was floxed. I thought I was just getting older. I had no idea that losing hair like that can be a sign of magnesium deficiency. I have those bands too and have been using them for upper body strengthening. My right shoulder had been bad for about five years or so following a bad lift on a machine at the gym. It’s actually better than it’s been in a long time.

    But just because some of us end up healthier after being floxed doesn’t make it ok that this is happening. I’m glad to hear you got better. Not everyone does. We are the lucky ones.

  2. Lloyd July 16, 2014 at 7:11 am Reply

    Tom – Congratulations on your healing. I’m so happy you’ve improved.

    I don’t want to be a downer, but it’ important to note that someone may attribute healing to factors that may not have actually contributed to healing. Anecdotal reports are important, and, apparently, almost all we have to go on regarding FQ toxicity, but they run the risk of presenting information that may not be relevant or could be harmful.

    Regarding floxxing,a s we know, everyone is different. I took two 500mg levaquin pills over two years ago, and still have tendonitis, joint pain, dryness of my eyes, mouth, skin, nerve damage, tinntus the list goes on. I have tried many types of diets, all organic, paleo, dairy free, etc, many different supplements, physical therapy, meditation, the list goes on. I can honestly say that nothing helped. And some of it hurt me (the paleo diet caused extra stomach problems; I believe magnesium made my symptoms worse; excess physical therapy was a problem). FQ toxicity, for me, has its own timetable,and I’m along for the ride.

    The emerging theories regarding FQ toxicity point to damage to the mitochondria of our DNA, damage to our nerves and direct toxicity to the tendon/ collagen matrix. We still don’t know why different people react so differently to the medications, why some people recover faster than others, and some, sadly, never recover. That’s why I hope more research will be done.

    It’s great to have positive attitude and do your best when you’re floxxed (what else can you do), but it is also possible that, despite our best efforts and our feeling that we are “doing something” about the syndrome to get better, the syndrome, once started, has its own timetable and will do as it pleases regardless of the steps we take to get better.

    Again, this is not to say that one should not attempt to do something about their floxxing. At the very least, from a psychological standpoint, for some, it is good to feel that one is taking action against their disease. So it can be a good idea to adopt a “healthy” diet (even though there is great debate on what a “healthy” diet actually means), maintain a positive attitude, or do things that you think encourage healing in yourself.

    • Ruth Young July 17, 2014 at 5:52 am Reply

      FQ’s chelate magnesium. You can look at the picture of the molecule on the package insert and see it’s true. I wish I had had chemistry more recently than 1984 or I might have seen it. Might have caused me to rethink taking it at all.

      If a drug chelates magnesium it is likely to cause a magnesium deficiency, the only question is how severe. There is much research showing FQ’s cause increased oxidative stress. One research study I read recommended prescribing antioxidants with FQ’s.

      To have a reaction and not take magnesium and antioxidants is like playing with fire and hoping not to get burned. You might recover anyway if your diet is adequate. But you might not.

      Because of the damage done to GABA receptors for some people taking an FQ they can have a paradoxical response to magnesium. This doesn’t mean the mag is making them worse or that they don’t need it. It means they are in a horrible situation wherein the very thing they need to save their bodies and maybe their lives cannot be tolerated by their broken nervous systems.

      I backed off on magnesium when my CNS would not tolerate it. I took it with calcium sometimes, because I could tolerate it better that way. I did anything I could to keep getting magnesium into me. Finally, my broken CNS healed enough for me to tolerate it better. In order to heal completely from this I will need high doses of magnesium for at least another six months and at least some magnesium supplementation for the rest of my life.

      Anyone who doesn’t realize the implications of the loss of functional magnesium caused by FQ’s is living with a ticking time bomb inside their bodies. Lisa posted a study recently of the link between increased prescribing of FQ’s and a rise in Type II Diabetes, even in non-obese people. Not all the people who developed diabetes after taking FQ’s ever had a noticeable reaction to them. But the article theorized that the FQ’s created magnesium deficiency that lead to diabetes.

      FQ’s create a deficiency of magnesium that is unlike a dietary deficiency. The magnesium was clawed out of places nature would never take it from. Chelated comes from a Greek word meaning “to claw.”

      If you’ve taken an FQ you have magnesium deficiency and the testing we have is probably not sensitive enough to reveal it. But it can reveal itself later through other health problems, unexplained relapses or tendon damage over a year later.
      I know FQ’s damage DNA, but for many people that damage is no more than if they’d smoked cigarets for a couple of years and their body will repair the damage. Only a small percentage have significant mitochondrial damage.

      But 100% of people taking FQ’s lose at least some magnesium. In a country where most people are magnesium deficient to begin with, that is a horrible thing. To not take supplemental magnesium in some form after taking an FQ doesn’t make sense and it’s a scary gamble with one’s health. There is even some research suggesting that taking magnesium helps prevent some of the mitochondrial damage FQ’s can cause.

      A damaged CNS will heal on it’s own timetable and may not be able to fully return to normal.

      But a magnesium deficiency caused by chelation won’t fix itself. The oxidative stress caused by FQ’s requires strong antioxidants to combat it. Maybe young people can get enough of both through diet alone, but as a floxed middle aged person, I know if I stopped taking my magnesium and antioxidants I would go downhill in a hurry, possibly ending up permanently disabled in some fashion. FQ toxicity is nothing to play around with.

      That our doctors don’t read the research and tell patients what they need to do is completely unacceptable. Doctors have enough chemistry to look at that molecule and know what it does, but they aren’t thinking analytically. They aren’t connecting the dots to see the ways that FQ’s chelation of magnesium is like the first domino tipped over in a cascade that eventually can completely ruin a person’s health, sometimes permanently.

      • Lloyd July 17, 2014 at 6:17 am Reply

        Hi Ruth,

        Thanks for your comments.

        Yes, I am well aware that FQ’s chelate magnesium out of the body However, I am not aware that magnesium supplementation directly correlates with healing from FQ toxicity in any way. I have heard, again, anecdotally, that one’s level of magnesium directly prior to being floxxed can impact the severity of the reaction. Again, I am uninformed and unaware about whether this is a binary process e.g. magnesium ingestion can replenish unnatural chelation of magnesium by a toxic compound.

        I will preface my next comments by saying that I am, by no means an authority on anything medicinal or on magnesium. However, it had been my observation that there is a magnesium cottage industry on the internet – everything from topical magnesium oil, to “angstrom” magnesium and various magnesium supplements – all promising or strongly indicating relief from everything including muscle cramping, insomina, flexibility and anxiety. And, even before my floxxing, I bought all of those products. They did not help with the conditions for which they were indicated and even made some of mine worse. Again, I have tried various magnesium chelates, natural calm powder, magnesium oil, mg malate, mg chloride on and on and on, for years even before floxxing. I found no subjective benefit for any of the above indicated conditions. The oil (heavily diluted) actually ruined my skin for a time.

        I have read several important books on Magnesium including “The Magnesium Factor” by Mildred Seelig, and, in the abstract, I have no doubt that magnesium is critical to life and health. However, I state again, that I do not know if the magnesium products are assimilated into the body in such a way to utilize the magnesium content of the supplement for healing from an unnatural toxic reaction.

        Perhaps the best course is to supplement if you can tolerate it. I’d love to “replenish” my magnesium stores, but I’ve no idea how to do so at this point.

        Thanks for reading.

  3. Ruth Young July 17, 2014 at 7:45 am Reply

    To say magnesium will not aid in recovering from FQ toxicity is like saying Niacin won’t help a Pellagra sufferer.

    Some people are primarily harmed by damage to their DNA by these chemo drugs doing exactly what they were intended to do, but everyone taking an FQ lost at least some magnesium to it. You have to try to put it back. Loss of functional magnesium causes oxidative stress too.

    Maybe all these cottage industries pushing magnesium are seeing what doctors have missed– that supplementing calcium without having enough magnesium causes more harm than good. The USA supplements more calcium than any nation on earth, but has the highest rates of osteoporosis in any developed nation.

    When I was first floxed I read every medical research study on FQ’s I could to find out how they do their damage and how to fix it. Lots more info on how the drugs hurt you than on how to help yourself, but magnesium and antioxidants were mentioned again and again.

    The AMA recommends doctors test pt’s magnesium levels before giving an FQ. Doctors don’t do it, but knowing about that recommendation tells me I’d better keep pushing the magnesium.

    I googled magnesium deficiency too. Before being floxed I had half the symptoms. Afterwards I had every single one. Kind of obvious what happened.

    If I had chosen to just ride it out, instead of researching and then reading my body’s signs and symptoms as evidence of what was really going on– well, that would have been disastrous. I would never tell any Floxie to just give it time. Give it time, yes. But take magnesium and antioxidants. There are just too many research studies showing the loss of functional magnesium, leading to oxidative stress, leading o tendon damage from FQ’s.

    Will magnesium cure everyone? No. Because these are horrible chemo drugs too, and some people incur overwhelming and irreparable damage to their DNA. But at least they don’t need to also be dealing with a functional magnesium deficiency on top of all the other damage.

    If you took an FQ I think you should be pushing magnesium in whatever form your body can tolerate it. Increased symptoms from it are a sign of a damaged CNS giving you a paradoxical response, not a sign your body doesn’t need it.

    Magnesium lowers blood pressure, but when I was first floxed it raised mine. It doesn’t do that now. So at least some of my GABA receptors came back. Downgraded GABA receptors make it impossible to relax. Magnesium relaxes you. If you can’t relax, you get the opposite– racing heart, anxiety, elevated BP.

    What worked for me was tiny amounts of magnesium throughout the day. I also googled what foods have magnesium and ate those foods primarily. It seemed like magnesium supplements bothered me, but food rich in it was almost always ok. I had one stretch that was pretty bad and even eating mozzarella cheese heightened my symptoms, but I was so sick to my stomach I could hardly eat anyway. That only lasted a couple days. For the most part magnesium rich foods seemed to really help me much more than supplements alone. I still focus on both.

  4. Lloyd July 17, 2014 at 9:13 am Reply

    Hi Ruth,

    Thanks for your comments.

    Please remember that I did not state that magnesium will not aid in recovering from FQ toxicity. I do not have this data. I said that I am not aware that direct magnesium supplementation correlates with healing from FQ toxicity. I do not know and I am not aware of a link between putting magnesium in the body (or bathing in it), in the form of supplements, correlates with the body absorbing it correctly.

    Yes, when I learned about magnesium, I learned about how most people are deficient and that calcium supplementation in the U.S. is way too high.

    Your response appears reasonable: get magnesium in foods and supplements if tolerated and take at tolerated dosages.

    Which foods did you tolerate that were magnesium rich?

    Thanks.

  5. Ruth Young July 17, 2014 at 9:25 am Reply

    I ate primarily mozzarella cheese, yogurt, almonds and other nuts, salmon and other fish, tuna once a week (greater risk of mercury contamination than other fish, so I limit it) and when I could tolerate it, a little square of dark chocolate.

  6. Lloyd July 17, 2014 at 9:36 am Reply

    Interesting. I’ve been CRAVING dark chocolate (85%) and eat a lot of it (but I always have):) Funny, though, how different health professionals and philosophies have different attitudes regarding food. For about 6 months I went totally extreme Paleo (that didn’t help).

    Certain Paleo sects caution about nut and seed consumption due to their phytic acid content which, the adherents contend, have “anti-nutrient” properties and are even “toxic” to the body. Then there’s the whole Omega-6 to omega-3 ratio and poly-unsaturated fat content It’s so hard to know what to believe anymore.

    http://paleoleap.com/are-nuts-and-seeds-healthy/

    Basically, I found that diet had/has zero impact on my floxxing (however, I have always excluded sodas and most packaged food from my diet). Also, the Paleo diet made me really sick – but my cholesterol was amazing while I was on it 😦

  7. Ruth Young July 18, 2014 at 9:58 am Reply

    I also eat dark leafy greens, but they are better if cooked. The calcium and magnesium in the cells is more available after the heat breaks down the cell walls containing it.

    I’ve always heard nuts and seeds were excellent for your health, if a little high in calories.

    I just read an article in one of my women’s magazines that said if you are craving chocolate you might be magnesium deficient.

    I get what you mean about supplements– they aren’t food, they are drugs. It seemed to me that magnesium supplements got my blood level up high, but I’ not sure how quickly that magnesium was assimilated by my body. But when I tried to do it just through diet alone my magnesium levels dropped dramatically and I lost muscle tone all over again. It’s like all of it came back, and when I started with the magnesium tablets again I regained what I had lost over the course of about three weeks.

    For many people, a healthy diet is probably sufficient for most things. But when you have been floxed your body has been through such a beating that some supplements are probably necessary, but the healthy diet is just as important. Supplements are just that– a supplement– they can’t be used in place of food.

  8. Jean Hooper April 19, 2015 at 11:07 am Reply

    Are magnesium supplements safe?

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