Summary and Timeline of My Floxing Experience

 

    • January 2009: Three day course of Ciprofloxacin, 250 mg twice a day for a simple UTI. I took five of the pills, seemingly without incident. It cleared up the UTI nicely. At age 50, this was only the fourth or fifth time I had ever had antibiotics in my life and it was my first exposure to a fluoroquinolone antibiotic as far as I knew.
    • August – September 2009: Seven to nine months post my first exposure to Cipro, very mild delayed symptoms of FQT began, although I didn’t recognize it at the time. I wasn’t aware of it yet, but the clock had started ticking for me, and the insidiousness of the “floxing syndrome” had begun. This time frame of 6-9 months post exposure is well known to flox victims, quite characteristic to this syndrome, and has been described previously in a number of “flox documents” written by victims. A six month delay in possible tendon ruptures post exposure is also listed on the drug inserts and Black Box Warning, but in reality, a 6-12 month time frame and possibly longer delay is well acknowledged and accepted within the scientific and research literature.
    • March 2010:   Nine day course of Ciprofloxacin, 250 mg twice a day prescribed for UTI symptoms. Adverse effects started on Day 5 of treatment and by Day 9 I was completely disabled and bedridden with severe, generalized tendinopathy, extreme muscle weakness and fatigue, muscle and/or tendon fasciculations, strange peripheral neuropathies in my arms and legs, extreme general fatigue, severe mood swings, “brain fog”, hallucinogenic dreaming, headache and head pressure, ear ache, nausea, extreme hot flashes, dry mouth, dry eyes, feeling faint and feeling “like I was 100 years old”. I was essentially bedridden for the first several months due to the severe systemic tendon pain. However, after staying immobilized to not stress the tendons for the first couple of months, I slowly started to get up and “exercise”, which meant taking a few steps a few minutes per day, and increasing this by a minute or two each day. In such a fashion, I slowly improved, to the point I was able to walk around my small house, and out the car-length drive to the mailbox, by about Month 6-7 post. I also could type for longer periods of time on the computer (I had used voice activated software the first several months due to severe tendon pain in fingers, wrists, arms). I also started stretching my muscles and tendons, to the point I was as limber as before the antibiotic by Month 7 post. Thankfully, for whatever reason, I did not experience any major tendon ruptures during this time.
    • November 2010: Acute flare seven months post the March Cipro developed over a 24-48 hour period. This is when my CNS symptoms, severely dry eyes, and a variety of other characteristic symptoms of this toxicity started in earnest and persisted from then on. Again, note the time frame of new and renewed symptoms developing 7 months post exposure for me. In hindsight, I believe this flare may have been self induced by my own actions, and could possibly have been avoided had I known then what I know now.
    • November 2010 – June 2011 period: I had been slowly improving in all areas, including the tendinopathy, up until November 2010. After the November 2010 acute flare that occurred, the tendinopathy stopped improving, and in fact, slowly started worsening again, along with all the other numerous symptoms I developed with this flare. Over time, I continued to decline with a variety of renewed and new symptoms which included CNS, ANS, PNS, cardiac, and a host of other “system” symptoms, as well as the ever present tendinopathies. By spring of 2011, I was housebound once again and felt it was just a matter of time for me. As best I could, I started making final preparations, as I assumed I was just going to collapse and die in my house suddenly. By that time, I was living alone and so I left notes throughout the house for how to distribute my stuff if I was found dead, as I was physically unable to discard it myself.   I also wrote notes to 911 paramedics in case I actually had time to call them, with suggestions for what tests to run (and for god’s sake, no FQ’s!) if I was still alive when they found me, and left these notes loosely on the floor at all times. It was incredible: on paper, other than the thyroid antibodies, I was the picture of health – I’ve never even had any common inflammatory markers elevated, even during my acute stage. And yet, I felt I was dying, and believed I would die — and I was ready to go then.
    • June 2011 – December 2012 period:   I was finally diagnosed with anti-thyroid antibodies in June 2011, the first real objective measurement out of all the extensive testing I had undergone which indicated a potential problem. And so began the “TH/Iodine” part of my journey. I started the medications with high hopes, and experimented with all the usual ones (both synthetics and “naturals”), as well as iodine. I found that TH and iodine indeed drastically and profoundly affected all my symptoms in consistent, and eventually, predictable ways.   I started riding my bike, swimming, and walking up to several miles at times again. There was no doubt in my mind that being on TH helped significantly, even though serum values did not change much. Presumably this is because my axis was shut off, and antibodies decreased. However, I also soon found that achieving stable regulation or homeostasis of my symptoms was difficult, if not impossible, even when on a full replacement dose and my axis was shut off with no endogenous contribution of TH (confirmed with continual serial monitoring of blood work every 2-4 weeks). I went up and down a few cycles in terms of symptoms, always correlating changes in symptoms with changes in TH/Iodine status as well as blood work. It became apparent that TH/Iodine status was a major player in my problems, but I began to suspect that some other factor(s) were contributing as well.
    • December 2012: Another acute MASSIVE flare, now two years and 9 months post March 2010 Cipro, again developed over 24-48 hour period at the end of December. This time, the CNS, ANS, PNS, cardiac, and all other symptoms progressed to even worse than had occurred with the November 2010 flare, with severe, disabling vertigo, migraine-like symptoms, nausea and more in addition to all the other symptoms. Unfortunately, once again, in hindsight, I believe this flare may have been self induced by my own actions, and could possibly have been avoided had I known then what I know now.
    • January 2013 – February 2014 period: Completely non-functional and living in complete and utter hell during this time, now basically Year 3 post Cipro. Lost control of my axis, and forced off TH due to continual, wild flaring as thyroid axis tried to right itself. Bedridden with chronic vertigo, nausea, all other prior symptoms including the tendinopathy, along with what I call “the dying feeling”. Used kneepads to slowly crawl around; could not walk, shower, clean house, or drive for at least the first half of the year; forgot to pay bills some months, ran out of food other months, depending on neighbors and friends to shop for me.   Slowly spiraled down into all the food sensitivities, ending up on an extremely limited diet; was starving but could not eat due to severe symptoms and nausea and GI issues as well. I really lost a lot of hope and my will to live during this time. I withdrew from whatever few relationships I had left, and this time, set a date to end it all if improvement didn’t occur within a specified date. However, this is also the year I really started putting together all that I had learned during my “TH/Iodine Phase”, and eventually I was able to regain some control of my symptoms using that knowledge. It was a lot tougher and slow going because I no longer had control of my axis and was relying on the natural negative feedback system of the axis, waiting the many months it would take for it to stabilize. The few hours per week I was functional were used to shop for food, write my good-bye letters, and pack up, give away, and discard most of my belongings. The rest of the time, with nothing else to do but suffer and exist in sheer misery until my planned date, I continued researching and piecing together all that I had learned into a few more additional hypotheses about the mechanisms of FQ toxicity, to add to the ones that already exist. I put together a conglomeration of writings of everything I had learned on several thumb drives that would be sent to others in the event of my passing, in the hopes this information might be useful or at least thought provoking to someone, someday, somewhere, somehow.
    • February 2014 – August 2014: In February 2014 I made just the smallest change in my routine, which resulted in a subtle and tiny “shift” within me. It was rough going the next several days, but it felt like whatever was happening to me was going in the right direction, and I pushed onward. I had nothing to lose, after all. I didn’t have control of my thyroid axis, and by now, I also felt I had additional factors contributing to my problems, so I didn’t have a lot of faith that major improvements were on the horizon no matter what I did. But as a result of all I had learned in the past couple of years, there were still some things I knew I could use to affect my thyroid-related symptoms.   Using the knowledge I had gained in the past couple of years, I was able to correctly predict which symptoms would occur when, ride them out, and control them somewhat effectively, if minimally. The year 2014 in general has been very very similar symptom-wise to the November 2010 – June 2011 period before I got on thyroid hormone. A major difference is that I do have more knowledge now than I did then, and, as I said, have been able to predict and control my symptoms somewhat. However, the same overall feeling of “I’m dying slowly” is still there, and I’m not sure this time if I can 1)get back on TH meds, and 2)if that will help again as much as it did the first time.
    • August 2014: I suffered yet another major flare when I accidentally ingested a food item with extra iodine in it. Severe neurological and weakness symptoms developed as a result, as well as particularly affecting my thyroid gland and thymus gland. Now, my thyroid and thymus gland waxed and waned with swelling and pain whenever I ingested the slightest amount of iodine. This further limited my already severely limiting food choices to hardly anything, as almost everything has tiny microgram amounts of iodine. I was caught between a rock and a hard place once again (or even more): limiting iodine was the only way to keep these new symptoms at bay, but by limiting iodine so extremely, I was only going to go hypothyroid sooner than later. I could feel myself slipping back down into a hypo state slowly. Eventually, my salivary glands became quite painful, and felt swollen; I assumed this was due to low iodine uptake or autoimmune attacks on the glands in an attempt for the rest of my body to get some iodine. In December of 2014, the severe CNS symptoms I experience with being “hypo” started increasing dramatically, and pretty quickly, the severe vertigo was starting again. Taking just a few micrograms of iodine, T3 or T4, cleared up this vertigo nicely, and I felt better immediately. There was no way my thyroid gland was coming back from this, and the vertigo was a deal breaker for me: I simply couldn’t live with that again. So I started up thyroid meds again.
    • December 2014:   I slowly started thyroid hormone again, increasing T4 by only 6.25 ug at a time, and supplementing with 1-2 ug T3 when necessary.  I increased just enough to stay ahead of the most severe hypo symptoms while avoiding the hyper symptoms until I reached my former full replacement dose.  The severe vertigo disappeared completely, but now, it became apparent to me that the thyroid hormone was exacerbating some underlying symptoms that had progressed within me in the past couple of years.  There are several cases in the literature of MG as well as Addison’s being “unmasked” by “hyperthyroidism”.  I was not hyperthyroid by any means, but simply increasing my thyroid hormone back to normal levels was definitely bringing out some symptoms of severe muscles weakness, including respiratory muscles and jaw muscles for eating and swallowing, and of course the eye muscles which had plagued me throughout this entire ordeal.  The thymus pain became substantial and chronic as well.  It became apparent that I definitely had some kind of severe neuromuscular condition on top of the thyroid issues which had progressed in the two years I had been off of thyroid hormones.
    • March 2015:    As of Year 5 post, it became increasingly clear to me that there was a massive autoimmune or hypersensitivity component going on in me.  Iodine, and an increasing number of other foods, even if raw or organic, were causing severe pain, swelling, and burning of both my thyroid gland and my thymus gland.  The pain and burning would extend to my throat and back of tongue and salivary glands and lymph nodes.  My chest and lungs would feel very dry and burning as well.   Reactions were both immediate with some foods, and delayed by hours with others.  Because of this, and the thymus gland involvement, as well as the ongoing autoimmunity issues with my thyroid gland, it seemed pretty clear to me that I was experiencing severe autoimmune and/or hypersensitivity reactions.  Small trials with Cortisol help alleviate these symptoms, further implicating autoimmune issues within me, but also obviously increase my tendon pain, especially my eye pain.  Because of the tendon issues and ruptures unique to FQ Toxicity, I’m too afraid to do a trial of large doses of Pred.  I also would be concerned about cardiac issues (heart attack), dysglycemias (progression to full blown permanent diabetes), and the fact that a full 1/3 of people on large doses of Pred experience “steroid psychosis” when on Pred (with my luck, I’d probably be one of them).  I never thought I’d say this, but at this point in time, I think thyroidectomy and thymectomy would be a consideration.  It’s obvious that these organs are both a huge source of antigenic stimulation for me.  I would be most interested in plasmapharesis at this point in time, to see how much, if any improvement I might feel, but I sincerely doubt any physician would support me in this.
    • March 2016:   I continued to slowly improve in all areas, as described in Update: December 2015.    However, it became apparent my progress was going to be limited by continuing and progressing underlying issues.  TH/Iodine greatly affected these issues, but didn’t resolve them.   During this time, I went through the rounds again of numerous supplements, all of the more well known ones to people with chronic issues, but some lesser well known ones as well.   All of them affected me in different ways, but didn’t seem to get at what the “real problem” was.   I limited my antigenic exposure by staying on an extremely limited diet, and keeping my TH/Iodine as low as possible.   This helped limit the thyroid gland, thymus gland, and salivary gland pain and symptoms I was experiencing (I did NOT have my thyroid and thymus gland removed, or undergo plasmapharesis).   At this point, I strongly suspect one or more channelopathies as playing a role in my symptoms (see Additional Mechanisms to Consider and scroll down to “Channelopathies”).   Channelopathies can be autoimmune in nature, and can contribute to Myasthenia Gravis-like syndromes as well as Thyrotoxicosis syndromes.   I suspect intracellular and/or mitochondrial calcium homeostasis disruption as being a potential underlying feature and contributing to many of my clinical symptoms, although other ions are suspect as well.  From a clinical perspective, I would say my progressive symptoms appear to mimic or be indicative of any of the variations of 1) Channelopathy Disorder/Syndrome, 2) Myasthenic  Syndrome, and 3) Multiple Endocrine Neoplasia Syndrome.  I would not be surprised if I have an unknown or very rare gene mutation in one or more of the genes representative of these syndromes.  This could have been a pre-existing factor, or, just as likely, a de novo mutation caused by the FQ.

 

 

 

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