Kimberly K’s Story
I got pregnant soon after and noticed my first symptoms when I was 6 weeks pregnant. (It is not uncommon for the first symptoms of fluoroquinolone toxicity to wait two months before appearing.)
My symptoms came on strong and stayed strong all through two back to bak pregnancies and nursing. I noticed that these symptoms were connected in occurrence and severity. They also were seemingly unrelated, making it very difficult to diagnose or treat. Because I was either pregnant or nursing for the first 4 years, I also was unable to get pharmaceutical help besides Tylenol or Benedryl.
My first symptom was severe insomnia. I couldn’t fall asleep. (Fluoroquinolone blogs speak often of insomnia, calling it feeling wired and tired). It was normal for the first 10 years for me to go 2-3 days straight without an ounce of sleep followed by 1-2 days of sleep. If I got 20 hours of sleep a week I was doing well. I started Temazepam in 2010 and was on it until February 2015. It got me sleeping well most nights.
My second symptom was severe gas and belching. It would start at 9pm and be constant and very loud until 2-3am. It seemed to be related to foods, but I could never diagnose the root cause. I started sleeping alone each night because I was so loud. An endoscopy came back clear. Acid reducing drugs worsened the symptoms. The only relief came from HCl tablets or diluted Apple Cider Vinegar. This symptom has diminished, but I believe it is only because of the focus I’ve given to avoiding certain foods. (I’ve read that fluoroquinolones often cause Gastro issues such as leaky gut. Gut problems can also lead to developing food allergies. Lowered stomach acid has also been stated. The reason I believe I was helped by collagen/gelatin is due to its support of healing the gut and providing necessary proteins/amino acids). (There are posts that warn of re-infection of ciprofloxin coming from eating non organic sources of pork, fish, chicken, and eggs/dairy. I find this is true. On days after I eat protein from possible ciprofloxin fed sources, I will notice very tight foot tendons upon rising from bed, my mind will be anxious for at least 2 days, my sleep will be lighter, and I’ll react more to foods).
My third symptom was diagnosed by a Fibromyalgia doctor as carpal tunnel. I now tend to believe it is peripheral neuropathy. During the first few years, I would often wake up at night screaming because my arms were on fire. There was searing pain radiating down my forearm to my elbow. My husband would have to hold my arms up and massage them to get them to calm down. Sometimes putting them in hot water would calm the pain. (I found the drug neurotin helped some. I currently use the supplement Curamin for this pain). For the past 18 years I have struggled with weakness in my hands and tingling pain in my hands. It affects all my activities when it flares up. While pregnant, I was unable to hold my children in my arms without the support of a pillow on my lap. The pressure of them would bring on the burning/numbing/tingling pain. (There is a black box warning on all fluoroquinolone drugs warning of a lifetime problem of peripheral neuropathy).
My fourth symptom was tendon pain. This began in early pregnancy and my muscle pain was confined to my shoulders and upper back. The pain was very focused. My primary doctor assigned me to get physical therapy for it twice a week, including ultrasound, deep tissue massage and electrical stimulation. One comment they’d make was that the trigger points seemed to move around week to week. This pain has diminished. I did have it ruled out for fibromyalgia. (While most fluoroquinolone survivors have leg/achilles tendon pain, some have reported shoulder and back pain). (There is a black box warning on all fluoroquinolone drugs warning about the danger of rupturing achilles tendons).
My fifth symptom was loss of mental clarity and memory. My college degree was Electrical Engineering, and prior to getting pregnant I was a software programming consultant. Once a few months pregnant, I was unable to go from room to room without forgetting my goal. It was more than just exhaustion; I lost mental clarity equivalent to chemo brain. (I had chemo for breast cancer in 2009, so I can compare the two events).
I’ve never been diagnosed as having ciprofloxin toxicity. I read reports where once floxed, the next time you take a fluoroquinolone the reaction is more severe. I was given Levaquin for a sinus infection years later and got severe stomach pain from it, so I stopped the drug. I’ve been to so many doctors for my symptoms and have never gotten a firm diagnosis. Only one alternative doctor had heard of the negative effects of fluoroquinolone drugs. Most “floxies” talk about test after test coming back negative. There are reports out now that prove fluoroquinolones affect the cell’s mitochondria, which they say explains the severity and longevity of the side effects.
One of the most interesting articles I read had to do with an article in the Air Force Times in 2014 which found a correlation between fluoroquinolone toxicity and the Gulf War Syndrome. The soldiers who went to fight in the Gulf war were given Ciprofloxin as a prophylactic against Anthrax. The military really believed in this drug’s ability to kill anything. Well, they found out just how strong and damaging it was when their brightest and best became disabled.
I’ve learned how to live life with the effects of ciprofloxin toxicity. It sure has put a damper on my family. My husband still sleeps alone and my kids have never seen me healthy, smart, or energetic. Being a “floxie” is such a disadvantage because no one believes you. I’ll never forget seeing the scribblings of a doctor after sharing my story yet once again…. it was covered with doodles. The one thing doctors are known to do is to pat you on the shoulder and offer you an antidepressant. Thanks but no thanks. Before you rule us out and declare us crazy, at least check out the communities on Facebook (search on cipro), watch some of the videos, read some of the stories. Drugs can be this dangerous and if you’re not careful, you or a loved one will be the next victim.