6 month update

Hello fellow warriors, I thought a 6 month update might bring a little hope to some (including me)? Long post but you can skip to "what helped" lower down if that's what interests you.

Background: Floxed in May 2025 after six 200mg pills of Ofloxacin for an uncomplicated UTI. I began feeling symptoms of mild weakness in my legs after 2 pills, and wondered if it was a reaction to the drug, but brushed it off (wrong). During the third night, I woke up with burning sensations throughout my chest, torso, pelvis, upper legs, and arms, and stopped taking the meds at that point. About a month later, my floxie diagnosis was confirmed by an infectious diseases specialist.

Main symptoms: Burning sensations and fasciculaitons throughout whole body; weakness in legs an arms; pain in hands and feet; fatigue; general feeling of unwellness; muscle spasming in chest and back; muscle tension that feels like restlessness; headaches; occasional joint pain; a few random nosebleeds; poor sleep. These have fluctuated a lot, with flare-ups happening several times including one time immediately after trying 200mg ibuprofen for menstrual pain. Otherwise, I can't say what flared me! In the first month or two, my anxiety, fear, and depression was pretty high.

Current situation: The past 3-4 weeks is the first time I've felt a consistent level of higher energy, allowing me to increase my frequency and intensity of exercise, which is tending to help. I have also started to feel motivated to attempt a return to work, whereas a couple months ago the idea still filled me with dread and stress. I still have occasional, relatively mild burning pain and have accepted that it may last a long time. I still have weird things happen to my body that never did before - like muscle spasms occurring for strange reasons. I am no where near the level of physical activity I was capable of before and I don't trust my body to do what I want at all anymore. I still sleep poorly many nights. But having higher energy levels, and less intense symptoms overall, makes a huge difference.

What helped for sure:

• taking sick leave. I have been off work since July.
• Working a lot on down-regulating my nervous system and anxiety through breath work, meditation, light exercise and walking outdoors, removing as much stress and responsibility as possible from my life, acupuncture, focusing on activities that bring comfort and a feeling of safety, and psychotherapy. I have realized I think my nervous system was in high gear for a long time before this happened, and if my neuropathic symptoms are going to last a long time, it will help to train myself to have less reaction and anxiety to them.
• Working with non-doctor health professionals like a physiotherapist, acupuncturist, massage therapist, and psychotherapist (thank you health insurance - none of these services are covered by universal health coverage in Canada). These people have just listened to me and tried to help me with my problems, rather than doubting me or trying to convince me that what happened to me is impossible or unlikely. They were open to learning about FQ toxicity without questioning it.
• Exercising as much as possible, even if very light. Having a physiotherapist help me with this was key to evaluating if there was any risk to my tendons, clarifying what was important to start with, and making sure I don't overdo it. For me, this started with light exercise every other day focused on getting the heart rate up and improving energy levels.
• This sub, FQ Toxicity Study site, and Dr. Pieper's book helped a lot at the beginning but also stressed me out. I am not sure there was a better way to do things since I needed the information and the support, and I wasn't going to get it from medical professionals generally, but at some point I got saturated and took a break, which also helped.
• Asking for support from friends and family.
• Having a family doctor who really wanted to help. She didn't buy the FQ toxicity at first, but I insisted she investigate it and she eventually agreed, which is how I was referred to infectious diseases and got a diagnosis.

Other things I did, but I don't know if they helped:

• Cutting out alcohol and caffeine completely. I had already cut out caffeinated coffee before this happened, and I was never a big drinker, so this wasn't difficult for me.
• Taking supplements (CoQ10, Vit C; D3+K2; B1; B12; NAC; magnesium glycinate; creatine).
• An anti-inflammatory, low-acid, no sugar or processed food diet for 1 month (this WAS difficult!). My abdominal pain did seem a lot better after this, but I didn't notice a big change in other symptoms. The digestive issues may have been just another side effect of the antibiotics that would have worn off eventually. I've since gone back to a much less restrictive diet (although still no alcohol and caffeine) and I haven't noticed huge changes in my symptoms so I am not sure food makes a huge difference to me.

There you go! Best of luck to all of you. Maybe I'll come back in another 6 months with good news again....I truly hope so!