I am 57 years old. I do not even know how to put my health story into words so that the human mind can understand the pain I have lived with. I lived in Canada and had been given many courses of Cipro for various illnesses over the last 30 years. Sometime ago, I began developing a lot of strange problems that no one could diagnose. I had GI difficulties, body pain, migraines every week, severe interstitial cystitis – so severe they wanted to remove my bladder. Thankfully, they did not. I was given many diagnoses too, including Chronic Fatigue Syndrome (CFS) and fibromyalgia. My cognitive abilities became so impaired. I loose words and my memory is shot. I had to leave my job with the Federal Government and work at home, at my own hours. I have been extremely fatigued for the last 25 years, but I never connected the dots between my health issues and the fluoroquinolone antibiotics like Cipro, Levaquin, Avelox and others until I blew out my forearm tendon, a classic post fluoroquinolone adverse reaction. It was only then that I began to learn more about the chronic symptoms that fluoroquinolone antibiotics evoke. I had them all and more. These symptoms didn’t appear all at once, and so it was difficult to identify at first, but over time, my illnesses became readily apparent and progressive to the point that it was no longer a question of if I was poisoned by a fluoroquinolone, but how badly.

Let me back up a little though and give you some more details. For years, I was fatigued and suffering from post fluoroquinolone reactions, but I didn’t know it. During that time, I had a long distance relationship with the love of my life in NJ. He waited and visited me back and forth for 10 years and I visited when I was well enough. When I was finally was well enough to immigrate to the US, I he asked me to marry him and so I stayed and had two wonderful years. We are jewelry designers and did the large shows. I functioned, at very low level and had to rest always, but I was living my dream. Even functioning at such a low level, I was happy after many years of hell.

One year, I kept getting bronchial issues and went to a walk in clinic. I was given Levaquin with Prednisone with NSAIDS and was on small dose of a benzodiazepine. Fluoroquinolones should never be used with steroids and NSAIDS, something I did not know at the time and apparently neither did the doctors. I took this combination again and again and again across that year.

**- Before and After FQ
This is me before and after fluoroquinolone toxicity.

My reaction to these drugs was delayed and so it did not occur to me to link the Levaquin or my past Cipro use to my strange symptoms. I have since learned that delayed adverse reactions are common post fluoroquinolones. After my first script that year I was more tired, could not walk far and something was not right. I didn’t know what though. During the second year I woke up with acid pain in the shoulder and could not lift it. I was told I had frozen shoulder. It was really a tendon rupture, common post fluoroquinolone.

The pain in my forearm and shoulder was horrific. It took 8 months before I could move my arm again. Then I woke up one morning and the same thing was happening on my buttock tendons. I had the same horrific, acid-like pain. Those tendons ruptured. I crawled for 4 months and tried to stand when I could. I could no longer walk, the pain was unbearable.

One morning I woke up and my entire body felt like it was beaten with a baseball bat. I had a shot-like feeling in the base of my neck. I sat up, vomited and shook. The next day my entire body started to shake. I felt like I had been electrocuted. I had sharp pains of electricity though my entire body. My skin felt ripped off of the bones with electric jabs and jolts. I had large jolts of electricity cursing through my body. I sat for 5 months frozen, feeling like I was living in a body of large, angry hornets, stinging me all over 24 hours a day, 7 days a week. The electrocutions were never ending.

My stomach almost shut down almost. Every joint in my body popped and cracked when I moved. My legs would not hold me. I lost the vision in my right eye due to a macular tear. I lost four teeth due severe periodontal damage. Other symptoms include:
•Up to 40 mouth sores at a time. The doctors say they look like burns or lesions. I wonder if it’s not a form of Steven-Johnson Syndrome.
•Swaying, if walking, dizzy, feeling of being “stoned” in the head.
•Sensory chills so severe with stinging that it takes 4 hot water bottles and wearing then down top as well.
•Arms and hands go dead and numb
•Constant feelings of being electrocuted
•Severe bowel constipation
•Intolerance to most foods
•Body hair stopped growing
•My skin has become very thin and transparent with enlarged veins.
•Pin prick sores on my legs and what looks like burns all over my body.

Post fluoroquinolone skin reactions
On the right, the burn-like lesions all over my body. On the left, the pin-prick sores on my legs.

•I experience severe changes in body temperature.
•Feelings of terror and anxiety, not related to any surrounding, that come out of the blue
•Severe depression
•Hyperthyroid

And the strange symptoms go on and on. No one seemed to understand. I was almost dead. I dropped 40 pounds in three months. My heart pounds non-stop. Terrors and jolts surge through me. I was hysterical and crying.

The doctors keep saying I have fibromyalgia. FIBRO, I am being electrocuted..!! It couldn’t have fibro. I sat and thought this is NO normal illness but nothing showed up much on my tests. I have seen 50 doctors and no one can find anything. I feel like I have been poisoned. I soon learned, I was not alone. It was the Levaquin, a fluoroquinolone antibiotic that I have since learned, causes severe peripheral neurophathies, mitochondrial damage, and all of the seemingly unrelated symptoms that I have experienced over the last couple of years.

Right now, I am in so much pain, I cry daily. I wake up with night terrors, heart pounding. My feet feel frozen, as if they are dying due to extreme hypothermia – the kind mountain climbers face when their fingers and toes turn black. That’s what my feet feel like. My tongue burns like a hornet’s nest, day in, day out. It has been a year now, living with all over the body hornet stings and large tree like branch zapping about 40 at a time. I had the EMG and nerve biopsy that shows axonal swelling. I had an MRI showing two white matter lesions in the frontal lobe, the doctors say are consistent with MS or Lyme disease.

I should mention, I also tested positive for the MTHFR mutation that makes methylating vitamin B’s difficult. Even with the axonal damage, no one knows what to do. They tried to give me painkillers but I cannot tolerate them and vomit them back up. I have been on Paxil for years, more because I cannot seem to withdraw from it than anything else. Gabapentin, even at a high dose, does nothing and so I suffer. I cannot take this much longer. I cannot live with the nerve pain. Please help.

A few other clues that might be helpful for understanding this mess. When I tried acupuncture to relieve the nerve pain, it made it worse. The hornet’s nest sting lit up. Ditto for niacin. When I was given niacin, my body reacted very strongly. If there are doctors, researchers, patients, or anyone out there that can help reduce the pain I experience, who can help heal, reverse, or even just slow what seems to be a progression of increasing pain, please leave your comments here. Eight weeks ago it attacked my toes and feet, they are ice frozen cold, I cannot walk now. They will warm if I lay down and add heat but as soon as I stand they are ice frozen solid again and the pads of my toes feel like burnt blisters.. I am having areas get so hot that blisters appear and burns as nerves are firing so hot.. doc saw this happen.. It is a nightmare as now I have lost my ability to walk on the feet as ice frozen.
If they thaw the pins and needles are more prominent back in the legs..

Good god sweetpea your are a mess. With all this going on you would be STRESSED out of your mind with worry no doubt amplifying your symptoms.

The only thing I can think of to re balance your body is a very long intensive fasting period ( 7-30days?) under the supervision of a naturopath. At least that way you can eliminate food additives and chemicals through pesticide and any reactions you may be having to salt , sugar , wheat and so on and by resting your body it will promote faster healing.

This is not the complete answer but it would be a tremendous start in the right direction

thank you, from what I have read IVIG is only good for the demyelation of the sheath, the axons have been damaged by the toxin,, and is progressing so my feet are ice frozen cold when I stand up. they warm abit lying down.. I have been in this pain 2 years and cannot take any drugs other than gabapentin which does not do a thing.. being electrocuted is very hard doing it raw. Some people have been put in induced comas for the pain like this.. Problem is the medical professions have no clue about floraquinoline toxicity. It crosses the brain barrier and abducts to the dna and genetically alters us

Welcome to NeuroTalk...

Can you tell us what you are doing today for yourself? For example to help with the MTHFR mutation and to help with encouraging repair?

huh? You must have confused my answer with another forums?

In the past, I have shared many of your symptoms and can well understand how miserable you must feel.

My doctors either did not know what to do with me or acted like I was a crazy person presenting with all of these strange symptoms.

I am so sorry to learn of your suffering and hope that a kind doctor will help you get some relief quickly. All I can do is offer support and tell you i wish there was a way we could all give you a big hug and let you know you are not alone with this.

Cathie

I hope you can get help and relief very soon, you are really suffering.

I have/had some of your symptoms and it is so frustrating, the sudden terrors out of the blue are awful, I'd mostly get them when falling asleep or wake up in the middle of the night with them, take magnesium which does help but still have them at times.

Also have the electricity feeling, mostly in my arms but when I was pre menopausal electricity would shoot down my legs and I even felt it in my head.

Think my Dr thought I was a crazy person and was of no help, would just stare at me and say he didn't know what was going on....oh, okay then....

Hope you get help very soon, so sorry you are suffering so much...

Oh, my God, my heart goes out to you. I have nothing to offer you by way of medical advice, but I so deeply wish you relief in this lifetime. You are an incredibly strong person. I wish I could help you. Godspeed.

I think my pain is unbareable, and at times question my strength to go on living.

And then I read a post like this, and my perspective changes.

I'm often moved by what I read on this forum, and inspired, and wish like crazy that there was something to help my forum friends. But this particular thread has me crying.

And I thought my pain was unimaginable. I sure hope this lady has been helped by now, it's been 6 months since she wrote this. Nobody could surely endure this kind of torture that long.

I'm in agony right now, but I'm going to remind myself that my pain cannot compare. Sweat pea, you give me strength.