My Healing Journey
It’s been nearly two and a half years since I was poisoned by moxifloxacin and about six months since I first considered myself recovered. By recovered, I mean that I am living a somewhat normal life without chronic pain. I still have tendonitis flare-ups and have to maintain a healthy lifestyle to minimize them. My mental health is still fragile and will probably never be the same. All things considered though, I’ve made so much progress from where I was.
My adverse reaction was almost immediate. After only two pills, my body started to break down. I had body-wide tendonosis, constant muscle fasciculations, paresthesia, heart palpitations, and insomnia. Pain was chronic, and I had to have help completing everyday tasks due to the tendonosis. I considered my reaction to be severe but limited due to my quick termination of the medication. If I had taken one more pill, I probably would have been in a wheelchair.
I went through extensive mainstream and alternative lab testing. Mainstream testing showed hypopituitarism, high monocytes, low myoglobin, low ammonia, and a positive ANA igG. Alternative testing showed some vitamin deficiencies and mold exposure. MRIs showed a torn labrum in my hip and mild degeneration in my neck.
After struggling through the first year, I made the difficult decision to quit my job and move from Texas to California to live with family. Initially, I experienced severe depression. The loss of my job and friendships, on top of all of the physical and mental health struggles, made the future seem hopeless. Fortunately, I slowly crawled out of that pit of despair and began healing.
More than anything, my wish is that you find hope from this message. I was the guy who had no hope, who had resigned himself to a life of chronic pain, fear, and disability. What was so hard for me to grasp is that healing is not always linear. For the first year, it was one step forward, two steps back. Between months 6 and 12, there was no improvement. I became very depressed because the lack of progress was crushing to the last bit of hope I was hanging onto. Things finally started to turn around when I changed my environment, perspective, and treatment. I’ve detailed below a list of what I did.
Medications/Supplements
Human growth hormone: I guess it could be said I was lucky to be diagnosed with hypopituitarism, because I was able to get HGH on prescription, saving thousands of dollars a month. I started physically improving when I started taking HGH. The chronic pain ended, and recovery time after physical activity dramatically improved. I don’t think it healed mitochondria, but it sped up tissue healing/recovery, allowing me to be more active. I took a break from it to see what would happen. After a few weeks, tendonitis returned in my hip. I started HGH again after a week of hip pain, and the tendonitis soon went away once again.
Nicotinamide riboside: NR is known to increase cellular energy and cause low grade mitophagy. For me, it has been a double-edged sword. While on an average dose, I noticed a reduction in tendon issues, but it also increased heart palpitations. I went off and back on to confirm the effects. I currently take a low dose in an effort to gain some benefit without the palpitation side effect.
Omeprazole: I was struggling with nausea for months after trying a gut healing protocol that was completely unnecessary but pushed by well-meaning individuals. The gastroenterologist suspected GERD after I tested negative for H. pylori, so that was the reasoning behind the medication. It worked. The nausea slowly disappeared. I stopped taking it after a month. The nausea hasn’t come back.
Mirtazapine: I suffered severe insomnia early in my floxing journey. I don’t think I got more than five hours of sleep a night. I tried all of the sleep supplements, which did nothing for me. Mirtazapine worked better than I could have imagined. I started sleeping eight hours every night taking a small 3.5 mg dose at bedtime. I didn’t have any issues coming off of it a few months ago. I still take it if I anticipate having trouble sleeping.
Mushroom tinctures (Lion’s Mane, Reishi, Cordyceps, Turkey Tail): I read that these are good for nerve cell regeneration as well as anxiety/depression. I’m not sure how much they helped, but I feel good about taking them, so I’ve continued.
Magnesium: I take Malate and Threonate. I started magnesium right after I was floxed, so I can’t say what role it has played in my healing journey. I do know that it reduces muscle fasciculations.
B12: I tested low for B12. I read that it is good for nerve cell regeneration, so I added it to my protocol.
Vitamin C: C is essential for collagen synthesis. I started it right after I was floxed, so I don’t know how much it has helped. I can say that I’ve only had one extremely mild cold over the last two years, so it may be playing a role in strengthening my immune system.
CoQ10, E, B5, multivitamin: I added all of these for one reason or another. I’m not sure if they’re helping or not.
Clonazepam: I was prescribed this benzodiazepine to be used sparingly with no refills. I was worried about dependency, so I only tried it on a few occasions, never more frequently than once within a week. It worked great, both for eliminating anxiety and relaxing tight muscles.
Physical Activity
Stretching exercises: I developed a list of PT/Pilates/Yoga exercises from different people who I had worked with. I combined them altogether to create a thirty-minute workout. I try to do this every other day.
Biking: I try to ride a road bike or stationary bike for twenty minutes every other day to improve my cardio since I can’t jog long distances.
Physical recreation: I took some risks returning to physical activities that bring me joy. I went on a short camping trip late in 2021. I was very sore after the trip, but I made it without injuring myself. I started playing golf again in 2022. This was quite risky, but I didn’t have any areas of tendinosis that were strained by the swing, so I gave it a go. I have had to limit play to once a week; otherwise, I get very stiff. I’ve started going on longer hikes. A five-mile hike last winter left me in pain for several days, but I’m able to hike five miles now without issue. I’d like to get back into backpacking, but I’m not quite there yet. Maybe in another year or two. Being able to do a few of the things I love was so important for finding hope and escaping depression.
Other Treatments/Lifestyle Changes
Diet: After floxing, I started eating organic and gluten free. Nowadays, I keep the same diet but cheat every now and then. I don’t have reactions or setbacks when eating meat with antibiotics, but I still try to limit it as much as possible.
Acupuncture: It’s really important that you find someone experienced. I saw a Chinese doctor for two months. After every session, my tendonosis would flare for a day and then improve. The sessions were extremely painful, but they definitely helped.
Vitamin D: I was low in Vitamin D after floxing, so I made an effort to get outside more frequently. The more time I spend outside, the better I seem to feel.
Sedentary hobby: Before floxing, I had done landscape photography. I had a huge library of unedited photos that I didn’t ever expect to get to. I started editing those photos, and what I found is that I was able to forget about floxing while editing. The concentration took my mind off of my situation. Anxiety decreased, and the days became a little easier to get through.
Family & Friends: Having people to physically help and emotionally support was the difference between keeping my job and home and ending up in a long-term care facility. My mom flew out to Texas to take care of me when I was in the acute phase and incapable of handling daily tasks. My brother & his wife opened their home to me when I returned to California. A few friends were always there for me, whether it was helping with errands, yardwork, or moving. They showed me what unconditional friendship looks like.
Spiritual life: Before floxing, I wasn’t very religious. That changed when I was going through the worst of it. I found faith in God and devoted time to prayer every day. At my lowest, faith was all I had left. It helped me to gain a better perspective on life. I believe that these sorts of tragedies happen for a reason, and it is our choice whether we learn and grow from them. I needed a course correction, and I don’t think anything less than what happened would have worked.
What Didn’t Help
HBOT, CBD, SAM-E, SSRIs, Probiotics
What I Might Try in the Future
IR Sauna, Peptides, PRP, Bemer PEMF, Tadalafil
Advice to My Newly Floxed Self (Disclaimer: for information purposes, not medical advice)
If I could go back to the start of this journey, there are a few things I’d do differently. I made some serious mistakes that cost me time and increased my pain, both physical and mental.
1. Don’t spend hours upon hours researching FQ toxicity! It can wreck your mental health, contributing to anxiety, depression, PTSD, and OCD. There is no magic supplement or treatment that is waiting to be discovered in the groups or research articles. The things that have the most potential to help are talked about at least semi-frequently in the groups.
2. Don’t push past your physical limits. Too much exercise causes injuries. It does not make one stronger. Exercise and movement within one’s physical limits is the best strategy.
3. The mainstream medical community will provide little to no help but is useful for testing. The alternative medical community can help but is often poorly educated on floxing. You’re either going to need to be your own advocate or travel to see a doctor with experience.
4. Floxing is not only a gut issue. Some floxies believe that fixing your gut is the key to fixing your health. This isn’t always true. For those with tendonosis, FQs likely damaged the mitochondria, and treatments that focus on that will likely provide the most benefit.
Who Gets Floxed?
This is the age-old question that dominates the flox groups. How can one person take a fluoroquinolone with no ill effects while another person is devastated? I spent a lot of time obsessing over the different theories. I believe now that I and many other floxies are genetically susceptible. I scoured the flox groups and the rest of the Internet for whatever information I could find on floxie genetics. I kept notes on all of the single nucleotide polymorphisms (SNPs) discussed. When my results came in, it was shocking to see how for nearly every relevant SNP, I was homozygous for the risk minor alleles (CBS, SOD2, SUOX, BHMT, and COMT genes). The odds of my genetics being so closely matched with the floxie profile had to be at least as unlikely as getting floxed. Hopefully, with the advancement of genomics, more research can be done so that ADRs are reduced.
To the Medical Community
Never could I have imagined I would be treated so poorly as I was by a few members of the medical community. My medical practice became defensive after the adverse reaction. My GP treated me like a problem to be swept under the rug, and the practice’s neurologist tried to convince me I was a hypochondriac. They were more worried about a lawsuit than seeing that I got proper care. Other doctors rushed appointments or didn’t want to see me after they learned what was going on. I did find a few good doctors who put in the work to help. The neuromuscular clinic, who did my muscle biopsy and skin punch biopsy, were excellent. I also saw a rheumatologist who ran every possible test while admitting that FQs cause serious problems not well understood. If you’re a medical practitioner reading this, you need to remember that you took the Hippocratic Oath to do no harm. Read up on fluoroquinolones. Warn your patients if you need to prescribe. It’s shameful that people are still getting poisoned while being treated for suspected or non-serious infections years after FDA black box warnings were issued.
My Life Now
My life is pretty good, all things considered. I’m happy and healthy. Throughout this last year, I’ve seen continued improvement. I can complete everyday tasks without pain or setbacks. I’m hiking five miles at a time, playing golf, and traveling again. In September, I traveled to Europe, averaging 10K steps a day. In December, I went snowshoeing in Yosemite to test my physical limits. I did end up with some neck pain that lasted a couple weeks, but the rest of my body was good. I still have random tendonitis flare-ups, but they aren’t as bad as they used to be. My depression is gone. The anxiety is still lurking in the background, but as long as the physical issues are mild, it doesn’t interfere too much with my life. I was athletic before this, so I still have a strong desire to backpack and play active sports again, but I know I’m not yet ready. With continued improvement, I’ll be back.
It’s important to note that once you have mitochondrial depletion you are now susceptible to the same symptoms from now taking a statin, doxycycline and man anesthetics.
Aside from those who died or committed suicide, I would say I was one of the worst hit (Cipro). Like you, it was only a couple pills. (I ended up taking a couple more, not linking my side effects to the pills.) This was in 2015, and it nearly took my life. I had head to toe damage effecting nearly every organ and system, including a large pericardial effusion, vision issues (that included hundreds of floaters—they would literally cover walls and floors I looked at); torn meniscus in both knees; major gut issues; Nerve damage to hands and feet; zero-2 hours sleep for the first year; etc. I needed help walking for the first 7 or 8 months and I was in excruciating pain. The mental side effects were horrifyingly indescribable. My hair came out in chunks (no wonder since these are actually chemo drugs.) I really just wanted “out.” The western medicine docs were terrible. They didn’t believe all this damage could be from a flq (or pretended so) and refused to even look up anything I was telling them. The alternative doctors I saw were amazing, and unlike your experience, I found two right away that were familiar with floxing, and one I believe saved my life. I had over 100 nutrient IVs, which are what turned things around for me. You mentioned you might try peptides, PRP and PEMF. I have done all of those. Peptides are great, especially if you are able to inject them and get from a reputable source. (I got them from one of my NDs.) I also have now had two prolozone injections in both knees and one shoulder. I went from using a cane, to being able to do modifeed squats, and no problems with my shoulder now, so I highly recommend these. They allow your body to heal naturally. I think the most important supplement is Magnesium. One early pioneer in treating floxies actually suggested taking milk of magnesia! He was on to something; and the late Dr. Jay Cohen, in probably the best book ever writtten on the subject (“How We Can Halt…) said perhaps one might even be able to avoid the damage from these toxins by taking magnesium 4 hours apart from the drugs. (I wouldn’t take them again under any circumstances.) Vitamin C is also very important since flqs destroy connective tissue (the reason for my vision obscuring floaters—they get at the vitreous) and I think pretty much every one should be on vitamin D. Most people are too low. I was initially put on 10,000 IU and now routinely take 5k. I think probiotics are very important too, once you heal your gut. You mentioned you were low in one of the Bs. Do you know if you have the MTHFR mutation? I do, and I know many on the floxie hope site do. Not only are you not able to use folic acid—you cannot convert it to folate—but folic acid is added to many foods and it can actually build up in your system and become toxic.
Ryan, that is awesome to hear of your recovery and continued improvement!! I’m sorry you had such a rough road in your first year or two but so happy you made some good decisions to help you move forward! I am almost 6 years out post flox and also older(67) and it took me about 2-3 years to “mostly” recover and I would say clean eating, various supplements but mostly TIME was my biggest healer. I suffered a lot of trauma and PTSD from going through this experience and I will never be the same physically and mentally but I try to find happiness and blessings everyday in my life! I was a PE teacher and very athletic and active. Being floxed took a lot away from me but I can still do most everyday activity and still need to work on building my strength, energy and stamina. Always stay positive and keep the faith in continued healing and recovery. A positive attitude will take you a long ways! Thank you for your uplifting story and I wish you well in your continued recovery and healing! All the best!!
Thank you so very much for sharing your story. I was floxed in 2020 after only taking one dose of Cipro. I credit my husband for saving my life, as I went completely numb, couldn’t walk or even think very clearly. Instead of putting me back to bed, he kept me up and I got through that initial poisoning. I still have a numb face and feet, but otherwise am doing OK. Like you, I’ve learned that moderate physical activity is best. Now I’m going through a pinched nerve trama and not sure whether that is related to my floxing or not. I am encouraged by your story – especially the mental and spiritual problems you have overcome. I absolutely love nature —keep on hiking!
Kratom has helped me tremendously for the pain over the past 9 yrs. Also DMSO and organic mustard seed oil on the bottoms of my feet twice a day.