It is painful to revisit this 3 years later, but I wanted to share my story in brief in case it is helpful to anyone as these recovery stories were my own lifeline 3 years ago. I was prescribed Levaquin in June of 2016 for mastitis. I had recently given birth in April and it was my second child and I am prone to mastitis so I guess the doctor thought a super strong antibiotic was the way to go. After 3 pills I woke up in the middle of night with burning shooting down my left arm. All of my muscles and joints were hurting as well. Emotionally I felt plunged into darkness. I had read the warnings on the label so I knew immediately I was having an adverse reaction to the drug, although the warnings were indicated for people 60 years and older. I was 34.
My doctor agreed that I had an adverse reaction to the medication but basically told me there was nothing they could do except pain medication and since I was nursing most of the medications he wanted to prescribe I couldn’t take anyway. I think that was a blessing looking back.
My pain got progressively worse for about five months, stabilized for two more months, and then very slowly got better. The places that were most affected for me was my right foot on the side. I had some skin discoloration and it felt broken to walk on it. I had an MRI which showed no tendon damage but due to the skin discoloration (looked bruised) my doctor assumed nerve damage. Behind my knees hurt as well and my elbows were awful. We had to hire a nanny (which we could not afford) because I couldn’t pick up my kids. This was the most emotionally devastating part because I am a stay at home mom. My entire identity and contribution to the household was taken from me. Other weird symptoms were peeling skin on my fingers, extremely dry mouth for awhile, and ringing in my ears. The last one is still there sometimes.
I also had a kidney injury from the Levaquin and my highest creatine level was 1.4 at one point. It stayed around 1.1 for over a year and went down to normal when I got pregnant again (which I will come back to later).
I was pretty severely depressed for six months. I think I cried every day for the first two months and most days after that. I did NOT think I would get better. But I did!! And odds are you will too, it may just take time.
Because I was nursing I didn’t take a lot of supplements. I did take magnesium right away (probably for the first 3-5 months) and it messed with my stomach a lot. After that I ended up mostly just using a spray on version and taking the occasional epsom salt bath.
Other things that helped:
- Wahls Protocol. I am convinced that eating extremely healthy and supplementally nutritionally through FOOD helped my body heal. I ate large spinach salads with olive oil and strawberries. I ordered organic beef liver which I ate twice a month. I ate sardines weekly. I got whole frozen organic chickens from the farmers market and made bone broth with the bones and beef bones from whole foods. I didn’t drink any alcohol. I did drink some coffee eventually. My diet did dramatically affect my nursing supply unfortunately so I did have to supplement.
Physical therapy. I had ultrasound early – don’t know if that helped or not – and then at around 4 months I had myofascial release by a physical therapist that understood nerve issues. It helped A LOT. I highly recommend it when your body is ready.
Everyone says this and I have to echo it. Be as active as you can. Start in tiny amounts. Move, work your way up. Exercise will help heal you.
I prayed my heart out. I felt like my faith was shattered for a long time but I prayed anyway. There were times where I felt a real closeness from God unlike any other time in my life, and I also had dreams of Jesus taking care of my children, which I had never had before in my life either.
Someone else said this and it was my mantra: do one small act toward your healing every day. Whether it is making turmeric tea, or stretching, or eating that giant spinach salad. It will make a difference in the long run even though it doesn’t feel like it now.
I did see a neurologist who specialized in this type of nerve damage and she had seen other people who had experienced nerve damage from floroquinolones. However the best she could do was offer gabapentin which I couldn’t take while nursing anyway. I saw a nephrologist too. All of my doctors believed it was caused by Levaquin. They just couldn’t help.
I felt about 90% recovered after a year. At about a year and half I found out I was pregnant again. Some of the pain initially came back very mildly but then it went away. I gave birth to a healthy baby girl in September 2019!! I had to go on antibiotics (2 rounds) for a UTI after that – I took Keflex I think – and had no issues. I have also severely sprained my ankle since and it recovered normally.
I do have some mild lingering GI issues but I have had tests done and they couldn’t find anything (so common for us floxies!).
My prayer is for all of you who are going through this. There is hope. Take gentle care of yourself and take it one day at a time.