Vicki’s Story – Levaquin induced Transverse Myelitis


In Sept 2007 I was given Levaquin for a sinus infection. My sinus infection returned through November and in December I developed Bronchitis, for which my Dr. prescribed Cipro, with a follow dose of Levaquin. On Dec 28, 2007 I sat down to dinner and felt a “shot” in the back between my shoulder blades, and it felt like fire shooting out through my breast bone in the front. I was immediately hit with spasms around my rib cage that made it difficult to breathe. I thought I had coughed so hard that I ruptured a disc. I knew I would have a difficult time being seen at the ER, so I took a muscle relaxer and went to bed. The next morning I woke up and the first thing I remember is that my legs were ice cold. I tried to get up and go to the bathroom, but soon realized that I I had lost the use of my legs. I also lost control of my bowel and bladder function. My husband took me to the ER of our local hospital. After sitting in the waiting room for 7 hours, the hospital filled up and went on diversion – sending me home without having seen any medical official. We went to our local medical college, where I was taken straight to an ER room. I was there 17 hours, had 3 MRIs, and saw a dozen doctors (some were residents). The ER doc requested a Neuro consult, but since it was New Year’s weekend, the orthopedic dept was taking their calls. So I never saw a neurologist. I believe if I had, they would have correctly diagnosed me. As it turned out, the docs at MCG had no idea what was wrong with me and sent me home with some Valium. I continued to decline, and the nerve damage spread further up my spine. In March 2008 I finally got in to see a neurologist, who took all of four minutes to recognize that I had Transverse Myelitis caused by the Levaquin/Cipro which were given along with steroids – which have since been proven to make severe neurological side effects more likely. I was paralyzed from the chest down for about six months before I began to recover some feeling in my toes. Over the next two years I had almost continuous physical therapy, as well as Radiofrequency Ablations to my spinal cord to help deal with the intense burning nerve pain. I continued to recover some function during that time, and in 2011 was able to stand and walk on my own again – although not up to normal standards. Now it is 2016 and I still suffer from burning pain in my thoracic and lumbar spine, have decreased strength in my legs, and balance issues. I’ve fallen six times over the last 4 years, and my spine has begun to degenerate at an accelerated rate. I also continue to have bladder retention, and bowel incontinence. This condition has completely changed my life. I feel blessed to alive and to have recovered as much as I have, because the majority of people who get TM either parish, or remain in wheel chairs or nursing homes the rest of their lives. However, if I had known that these fluoroquinolone antibiotics had the potential to cause such life changing damage to my central nervous system, I would have never taken them. I’m glad the FDA put a black box warning on these drugs this year, but I still feel it needs to be stronger and more clearly describe the type of life changing or lethal effects these drugs can cause.

I know there is no cure for the neurological pain that I have. I have to take a ton of other medicine now -Gabapentin, Baclofen, and Skalaxin to control the pain and spasticity; Celebrex for inflammation, Valcacyclovir to ward off viruses, Singluar to control allergies and asthma. The acute treatment for TM is high doses of IV Steroids, followed by high doses of oral steroids until the TM is in remission. All those steroids wiped out my immune system and I was diagnosed in 2013 with CVID – Common variable immunodeficiency, Then I had to start getting monthly infusions of Immunoglobulin. In 2014 I had a reaction to the IVIG infusions, so now I can’t have them any more. My IgG is still hundreds of points below normal, so I pretty much stay in isolation at home. I am able to go to stores during off peak times of day, but I avoid anyone with a cold or illness, and avoid being inside a room with a crowd of people. That means that I am not able to go to church as I did before. Another side effect of the TM is that now I’m allergic to most antibiotics except 2 oral and I IV antibiotic that I rely on when I do get sick. Thankfully, I’ve avoided additional sickness for the last 3 years, since I don’t have the immune system to fight it off. I’ve also had anaphylactic reactions to most pain meds, so I have to rely on the Gabapentin to control the pain. It comes with its own side effects, but thankfully I’ve learned to manage them and live with it. I have a faithful and loving husband. We now have 3 grandchildren, and one on the way in May 2017. I have a loyal Cocker Spaniel and this year I have begun to draw again. I look for joy in life every day, but at the same time I am always aware that I am not the woman I was before taking the Fluoroquinolone. There is never a morning that I don’t wake up in pain, or a night that I don’t lie down packed in ice packs to deaden the pain so I can sleep – or when I don’t wake up at least twice in pain and have to change positions or get up to replace the ice packs. There are still days when I have such brain fog that I can’t put two sentences together. Even on good days, I’ll start to tell somebody something and get to the end of my sentence and can’t find the word that was just on the tip of my tongue. I used to be a productive member of society, active in my community and in my church. I’ve learned to live with the isolation and loneliness that comes with being disabled like this, but there are still days when it is a heavy load to bear. I still love my life, my family and friends, but what wouldn’t I give to go back to that day and know better than to take that Levaquin. I wish I could warn everyone in the world about the dangers of these drugs and avoid somebody else going through what I have. Thank you for reading this.

** 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, 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.

6 thoughts on “Vicki’s Story – Levaquin induced Transverse Myelitis

  1. Vicki, I don’t know if you’re taking any supplements, but I would encourage you to try magnesium oil spray, colostrum ( for immune and lots of other healing benefits) and probiotics I use VSL#3 mainly but I do switch it up.
    Good luck in your healing journey

  2. So sorry you have gone through all this. I had horrific, terrifying problems after Cipro, including gasping for each breath, a sensation I was being strangled, blurred vision and olfactory damage so bad that everything in the world asphyxiated me. Hard to describe how ghastly that was. It too was given prednisone at the same time—and I had about 30 side effects all together. I still have numb toes, a couple dysfunctional fingers, ocassional breathing glitches (likely mitchondrial damage), vision issues, and a couple other things. BUT I am light years from where I was. Nutrient IVs helped immensely. Getting away from allopathic doctors and being treated by naturopaths helped immensely. One thing I wanted to share with you though, since you mentioned asthma, was this:

    As you are likely aware most (all?) prophylactic inhalers contain steroids which exacerbate fluoroquinolone toxicity, as well as fluoride, another big problem. When I was struggling to breathe (NOT asthma) I was so afraid of what would happen if I had asthma on top it. And it was BAD. I wanted out. I kept thinking that was how it felt to be water boarded—just horrifying. Anyhow, I was afraid to STOP my twice daily inhaler, but at the same time, I knew the steroids and fluoride in them were not helping me. My naturopath suggested H2O2 IVs. I was afraid, but at that point I really did not want to live. So I agreed. AFter a half dozen of them I took a leap of faith and started weaning off my inhaled steroids. Eventually I stopped altogether. It has now been more than 1 1/2 years and NO ASTHMA. I have had a couple maintenance IVs of the H2O2, but for the first time in decades I am on no asthma medications. I am angry now that I spent so many years on them. When I started I was ASSURED they would not effect my bones. I was diagnosed with osteoporosis in my 50s and now of course they are saying that, yes, they CAN affect the bones (and other things) I am so distrustful of allopaths (unless they are integrative) and big pharma. You would do well to seek out a good ND that does IVs. (Especially phosphatidylcholine which helps nerve damage.)

  3. Every doctor prescribes these drugs. When an antibiotic is needed, what are we supposed to do? I have a hospital borne superbug bacteria from surgery or catheter and guess I’m lucky I have a nurse that listened when I said I am very sensitive to drugs. Yes she prescribed Cipro but at the lowest dose. The other options stressed severe kidney issues. Can’t do that with my right kidney so Cipro was the lesser of the evils. So, my question is, are there any good options out there that work?

    • There are ones that are more benign like amoxicillin but the thing with the fluoroquinolones is that side effects can be permanent

  4. I have had accute idiopathic transverse myelitis for exactly one year. It left me paralized from the onset with absolutely no movement in my legs and feet whatsoever although I get excruciating neuropathic pain. They aren’t sure what caused my TM but think it was viral because I had a sinus infection a couple weeks prior to the onset however I also had a UTI and was prescribed an antibiotic in which I believe was cipro, but the doctor couldn’t find that info in the computer because I was treated at after hours care. I was actually undiagnosed during my first emergency room visit as well however three days later I was paralyzed and they took it more seriously. I had steroid treatment and that didn’t work so I had plasma exchange treatment which was unsuccessful as well. I saw my neurologist today and I don’t have any new lesions yet the last three MRI’S only show scarring and damage. I also have neurogenic bladder /bowels. My life has changed in a major way. I went from an active mother of 7 children and grandmother of 16 to wheelchair and bed ridden.

    • Bonny, so sorry this happened to you. If in fact it was Cipro, steroids would surely have aggravated the condition. Seems oddly “convenient” that they cannot locate records because you came in “after hours.” (I am guessing in a document request for a lawsuit they would be able to find those records.) And if you were given Cipro for a uti then they were ignoring the warning that these drugs should NOT be used for that purpose.

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