Going Blind by Shelley Sharp, copyright Oct 19, 2019
I am always so thankful when we are given the chance to tell our personal stories, regardless of whether or not we are believed. Hi, my name is Shelley–and I am a 53 year old woman living in South Porcupine, Ontario, Canada.
The last time that I shared my “Recovery Story” with Floxiehope (Shelley Story 1), I declared, “I have such happy news. I am healed, just one month short of two years FLOXED…” I then went on to list some adverse reactions that I was experiencing that I felt had resolved and shared some of the supplements I used to find that healing as well as diet changes and a few other alternative healing techniques such as Earthing (aka Grounding) and Vagus Nerve Stimulation Exercises. *At the end of my story I will list supplements that I have used and hope to try to further my health journey.
Let me be clear, I still believe that my interventions helped, but my declaration that I was ‘healed’ was premature. I was poisoned by Ciprofloxacin on Sept 19, 2013 and I am now currently six years Floxed. My most recent health concerns are– Kidney damage (reduced renal function), PTSD- Post Traumatic Stress Disorder, and Optical Nerve Damage/Optic Migraines in both eyes (although my left eye is the worst, as is my left kidney). Coincidence? I have no idea…the left side of my body seems to have received the bulk of the damages including my left hip joint, left leg, left shoulder, left hand, left foot, left side of my lower back etc. The antibiotic caused a whole host of damages and thus I experienced a wide array of adverse reactions, especially in those first two years (Sept 19, 2013 – Spring of 2016). What changed in the Spring of 2016?
We moved to a small northern Ontario city with a much smaller population than Kitchener and where the pollution levels were less and where the drinking water was not fluoridated. I was able to enjoy nature again…the forest and beautiful lakes. This is when I started Grounding almost every day and where I was finally able to walk longer distances, occasionally wear high heels again, where my shoulder, and ear issues disappeared, and where I started to sweat again, my skin was soft and supple and my hair wasn’t falling out. I had also managed some tears when I cried) and the severe temperature changes lessened to allow me to again enjoy hot showers. I was able to endure massages and a few chiropractic adjustments. I learned to de-stress and to better listen to my body and take better care of myself. I was also able to have sex with my husband again because I was finally able to maintain a sexual position without screaming in pain (my bad left hip). And I was able to (at least for a short duration) return to work part-time until my PTSD started to stand in my way (mostly due to my fears and IBS/Gut and Dehydration Issues.
Some of you may be obviously disabled (in wheelchairs), I don’t appear to be sick, but the truth is I am. Most people don’t believe me when I tell them, or they don’t want to believe it. I have been accused of faking being sick, but the truth is I fake being WELL. I hide my illness from others for various reasons which will soon become apparent. Living with an invisible illness (one that is not commonly accepted, and for which has no accepted medical label) often leads to judgement and criticism because others believe you look FINE on the outside, and therefore must be “making up” your suffering. But just because YOU can’t SEE it, doesn’t mean its NOT there. You can’t SEE depression, anxiety, or other mental illnesses physically, but that doesn’t mean they don’t exist. An invisible illness is an umbrella term for any medical condition that isn’t easily visible to others. This includes chronic physical conditions such as arthritis, diabetes, fibromyalgia, and others. Unlike having a condition that is observable, (such as a person in a wheelchair or a cancer patient who has lost their hair due to chemo treatments) those with invisible illnesses often face a lack of social awareness and additional stigma, and as a result, these individuals often face more skepticism, and are accused of being lazy or moody and in need of cheering up, going out more, calming down, or a host of other dismissive judgements.
But facts are facts–I was poisoned by Ciprofloxacin, a Fluoroquinolone Antibiotic.
I went to my Doctor with what appeared to be another Urinary Tract / Kidney infection. Because I was allergic to Sulfonamide antibiotics, my doctor prescribed for me an antibiotic called “Ciprofloxacin.” He took a urine sample, but did not wait to find out whether I had a bacterial infection before handing me a prescription. I remember asking about the prescription for which he replied, “Its a broad spectrum antibiotic,” it will clear up the UTI in just 10 days, its safe and its been around for many years. At this time, I had no reason to doubt my doctor, antibiotics were safe, kind of like taking a cough drop when you didn’t really have a cough. When I picked up my prescription at the pharmacy, I received no leaflet of warnings, despite the fact that they had several black box warnings issued by the FDA starting in 2008…instead, this information was withheld from me. I was NOT given a chance to make an informed decision to take this antibiotic. They didn’t feel it necessary to make sure that I was taking a medication which had disclosed all of the risks. They didn’t even tell me about any drug interactions or what not to eat or drink with the antibiotic. Had I known about the stern warnings, black box warnings about tendon damage, serious neurological damage, etc…had I KNOWN that some of the side effects may be permanent I would have insisted on a different, and safer antibiotic.
I was sort of lucky, (that is, luckier than most other people) who have been seriously disabled from severe adverse drug reactions to this class of antibiotic. I say lucky because unlike many others who fail to connect the dots of their sudden symptoms back to their antibiotic…I experienced an anaphylactic reaction to my Ciprofloxacin, just five pills or 2 1/2 days into my 10 day run of 500mg prescription. This saved me from finishing my full prescription! Swollen lips, tongue, difficulty breathing, racing heart beat, severe anxiety, headache, dizziness, nausea, joint pain-left hip and shoulder, numb and cold arms, but an itchy rash with a sensation of burning skin and severe anxiety. I told the doctor that I felt like I had been dipped in a vat of peppermint, that my skin was on fire! I was scared to death. However, they ran all kinds of tests that didn’t PROVE that I was in the kind of distress that my body was telling ME that I was in. I was sure this was an adverse reaction and not just a simple allergy. So I felt like a fool, I looked like a person who was suffering from anxiety and having a panic attack. That I was a waste on the ER’s valuable resources. I felt that I wasn’t believed and I was dismissed for lack of empirical evidence that had failed to prove an adverse reaction. The ER Doctor informed me that I didn’t have a UTI or Kidney Infection and should NOT have been taking ANY antibiotic, but because I was now experiencing an “allergy” to this one, he would take me off of it. He would note my allergy in my medical records. He assured me that once the drug was out of my system, I would soon feel much better. Essentially, he treated this like he would any other allergic reaction. He gave me Benadryl, Gravol, and an IV NSAID- Toradol for the pain. The ER Doctor also insultingly asked me if I was seeing a Psychiatrist, and when I said, “NO,” he then suggested, I return to my Family Doctor and inquire about antidepressants for my anxiety! I knew instinctively that this was no ordinary allergic reaction and that my anxiety was coming from my deep seated fear that my body was in crisis. I was listening to my body! But, to give a patient NSAID’s, Steroids, or even Fluoridated Drinking water after an adverse reaction to a Fluoroquinolone, is probably the worst things that a doctor can do…perhaps patients would be better helped by administering Magnesium and NAC with vitamin E. Most people suffering from an adverse reaction have moderate to severe nutrient deficiencies that prevent them from healing and detoxifying from the FQ’s. In fact, I later learned that due to several *impaired detox pathways was the reason that I was so badly injured by this drug (I will explain later). But had my doctor recognized an adverse reaction and not simply reacted to what looked like an allergy, perhaps his quick actions may have spared me years of pain and suffering. No patient experiencing an adverse reaction should be given NSAID drugs, or steroidal anti-inflammatory drugs like Prednisone. If doctors wanted to cause bad reactions, they could not have chosen a more lethal combination.
Unfortunately, I did NOT feel better in a few days! My skin became very dry, I seemed to visibly age over night with instant menopause. I was getting up several times during the night to urinate, sometimes passing out on the bathroom floor. I had terrible left flank pain, I was excessively thirsty, my mouth was dry, my body was inflamed, my eye lids, face and fingers were swollen every morning. I literally looked like I had been poisoned. I was having panic attacks where before I took this drug, I had never had one. I was experiencing insomnia, and was exhausted, very low in energy…yet when I did sleep…I was having vivid nightmares, my eye sight was blurry. My ears were congested, I was having difficulty hearing, ringing in my ears and sinus issues, I couldn’t bare to have anyone touch my ears…even pulling sweaters over my head (which I needed help to do now) hurt my ears. I was having mobility issues- walking with a cane, difficulty climbing stairs. I had tight neck muscles., my collar bones ached…and my head felt too heavy to hold it up. I was suddenly weak, my hands and wrists couldn’t support a mug of hot coffee, or open jars, or pull up my own blankets once in bed.
I was dizzy, unbalanced, experiencing vertigo, and I was confused, my brain was in a fog, I was having vocabulary recall problems when trying to communicate and it sometimes hurt to talk as my throat hurt, my voice was hoarse…almost like I had been yelling for hours, I couldn’t sing anymore. I was chocking on my own saliva. I was suddenly having food sensitivities to food I wasn’t sensitive to before…with hives and rashes. I was bloated, with gas, cramping and diarrhea. I had Vagus Nerve Damage, I could no longer gag.
My arms and legs felt numb and tingled like a feeling of bugs crawling up them, or water dripping down them. My arms often fell asleep, and this was not because I was cutting off their circulation, and not only while sleeping, but during the day while holding a fork or a pen or typing. My hands and feet were always cold, I couldn’t monitor my own body temperature and would seesaw back and forth between being too hot or too cold…I would have excessive armpit sweating, hot flashes and night body sweats. My lymph nodes were swollen, especially under my armpits and my breasts were sore and painful. My own sweat and urine smelled offensive to me. Many a night I could smell smoke and thought the house was on fire which would often trigger a panic attack until I walked from room to room to reassure myself that the house was safe. Or I would hear choir music…like Gregorian Chanting, a radio left on? No, no radio or TV was left on when I went to investigate the source…clearly just auditory hallucinations.
I had Dysautonomia—-it has to do with the nervous system being “all on and touchy,” at times, where lots of senses are on high alert and shouldn’t be, or at least had no good reason to be. If someone came in the room and I didn’t hear or detect them, or even if they came suddenly behind me when outside walking the dog, during those times….they would startle me SO MUCH that I physically jumped and yelled out. I would end up scarring the other person who could not understand how I had failed to hear them coming. This is not a normal reaction. Dysautonomia is best described as a physiological response or over stimulus of the autonomic nervous system (ANS). This is why my bladder, intestines and my sweat glands, pupils and blood vessels were all affected. I was zapping myself and husband with minor static electricity charges when I would touch him, or a light switch or the handle on our truck. I was experiencing muscle twitching and jerking and lots of hiccups. Myoclonus is a brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign and, generally, is not a diagnosis of a disease. These myoclonic twitches, jerks, or seizures are usually caused by sudden muscle contractions (positive myoclonus) or brief lapses of contraction (negative myoclonus). The most common circumstance under which they occur is while falling asleep (hypnic jerk). Myoclonic jerks occur in healthy persons and are experienced occasionally by everyone. However, when they appear with more persistence and become more widespread they can be a sign of various neurological disorders. Hiccups are a kind of myoclonic jerk specifically affecting the diaphragm. I had both with no pattern, the jerks often waking me up and hiccups that would last for an hour.
By Christmas of that year, just three months after taking Ciprofloxacin, I was thrown into instant menopause. I was losing my hair and it came out in clumps on my pillow every morning. I could no longer walk without a cane. I had a painful frozen shoulder (or tendonitis), painful left hip joint…arthritic in nature, muscle fatigue, cramping and twitching, sciatica pain, and Ischial Tuberosity pain (aka sitting bone pain). That pain you feel when you have been sitting too long may be irritation or inflammation of the ischial bursa, a fluid-filled sac located between the ischial tuberosity and the tendons that connect the hamstring muscle to the bone. So essentially, I was having some of the tendinitis and tendon weakness problems that one of the four black box warnings had been issued against this drug. I was also having extreme mobility problems walking, wiping myself on the toilet, I could no longer sit crosslegged on the floor or bend to pick up something dropped on the floor, I could no longer wear high heels, or have sex with my husband because I couldn’t maintain a comfortable sexual position. My husband had to cover me with blankets at night, he had to help me get into a sitting position in bed, he had to shampoo my hair in the shower as I couldn’t lift my shoulders. I fell down our stairs, breaking three fingers in my left hand. Shortly after that I developed what is called a “trigger finger” and my broken fingers never healed properly, I am not able to make a tight fist with my left hand. I suddenly needed assistance to climb or descend stairs. I was waking my husband up with panic attacks and after he cared for my needs, he would have to head off to work, exhausted. I was basically an invalid in need of constant, round the clock care. I began feeling guilty that I NEEDED my husband’s help, especially when I witnessed what this additional stress was doing to him. And he was helping me a lot- dressing and undressing me, helping me to sit up in bed, pulling my blankets up, shampooing my hair, drying it and curling it. I was basically an invalid. But he was very supportive and patient with me and I am very grateful to him for his love and loyalty.
I did return to my family doctor…I was careful to hide my anxiety. Why? Because women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. I wanted my doctor to listen to me, empathize, and work with me to identify the source of my medical problems. He was more likely to dismiss my main complaints to focus on my anxiety. What I absolutely did NOT want was to be patted on the head and sent home with a prescription for Prozac! So I forced myself to remain calm and to not let my fear take over, especially in front of my doctor. He did one of those knee/hammer tests for my reflexes and when my knee didn’t immediately respond after being hit by the tiny rubber tomahawk, he looked scared, but said nothing. I had no idea at the time of this test, that the absence or decrease of this reflex during my knee/hammer exam was problematic. It wasn’t until later when I googled about it…that I learned that he was running a central and peripheral nervous system test on me. After he confirmed that I had a decrease in this reflex, he had me stand and squeeze his hand and announced that I had carpal tunnel syndrome! I almost laughed aloud at his idiotic diagnoses. What I was experiencing went way beyond carpal tunnel syndrome. He also told me that I should go and seek physiotherapy for my Sciatica issue, but of course this isn’t covered by OHIP and we couldn’t afford for me to go.
I had come to my Doctor to report a very serious adverse drug reaction to Ciprofloxacin and I was dismissed, despite hiding my anxiety. My main complaint had been chronic pain, sore joints, especially my left hip and shoulders, and mobility issues, and yet he ignored these to focus on my wrists? Did he know that it was an adverse drug reaction? Was he afraid to admit it? He did not explain to me that I likely had peripheral neuropathy (nerve damage) and that it was caused by this drug. I doubt that he even reported the drug reaction to Health Canada as I fear he didn’t want to take responsibility for giving me this prescription. His office never called me for a follow up appointment. It was as if he wanted to forget that I was his patient and I certainly had no desire to return to the scene of the crime.
Before my doctor prescribed Cipro, he was aware of my full medical history. He knew that I had been a premature infant (born 8 weeks early) with immature kidneys. My kidneys never did function at full capacity. I had exploratory surgery at aged 2 and from aged 2 to age 6 I had to take a yellow liquid medicine for my kidneys. He also knew that I had IBS and Celiac, and was aware of past surgeries to remove my gallbladder, my appendix and cysts on my ovaries. He also knew about my Endometriosis and SIBO. He knew how long it took my liver to process and detox drugs because I had related the story of taking Dramamine on my honeymoon and sleeping for 4 days. He didn’t even WAIT to see what kind of “bacteria” I had to assign the right antibiotic for the job (the antibiotic best to kill the bacteria that was making me sick) and as it turns out, I DIDN’T EVEN HAVE AN INFECTION!
The very first blackbox warning in 2008 stated that in “patients with reduced renal function, the half-life of ciprofloxacin is slightly prolonged.” and that at the very least “dosage adjustments may be required.” Yet I was prescribed 500mg of Ciprofloxacin and not the 250mg dose adjustment amount. I later learned that adults with impaired renal function- Ciprofloxacin is eliminated primarily by renal excretion; however, the drug is also metabolized and partially cleared through the biliary system of the liver (mine was sluggish at best) and through the intestine (I suffered from IBS, sometimes diarrhea, but alternated between both diarrhea and constipation). NSAID’s always cause constipation with me and I was taking my Ciprofloxacin with Tylenol. According to the blackbox warning–“These alternative pathways of drug elimination appear to compensate for the reduced renal excretion in patients with renal impairment. Nonetheless, some modification of dosage is recommended, particularly for patients with severe renal dysfunction.” At the very least, this precaution should have been made for me–I should have been prescribed no more dosage than 250mg every 12-18 hours. BUT…because my other pathways of detoxification were also impaired, another antibiotic should have been given to me. This is clear negligence on his part, and my doctor is fortunate that I didn’t decide to pursue justice.
Many patients who suffer from adverse symptoms mistakenly assume that the drug is trapped inside the body causing continual damage. IT IS NOT. It has exited the body. It’s not that the drug stays in the body and never exits...its the SPEED at which it exits the body that causes the damage. If its moving through your body at a snail’s pace…it has MORE TIME to cause damage.
Let me PAINT A MENTAL PICTURE here of what I was like physically BEFORE Ciprofloxacin destroyed my health. I was formally a youthful and very ACTIVE person. When my Great-Grandmother was still living, everyone thought she was my grandmother, they thought that her daughter, my real grandmother was actually my mother, and of course my mother had to be my older sister. My youthful looks were inherited from my maternal line. I was also very active– I could mountain bike for miles, jog and run, walk and dance, jump and twist, I could exercise, I could skate and do figure eights on the ice, I could lift heavy loads (including lifting the equivalent of my own body weight) and also push things with my arms or legs. I was like an energizer bunny, I had loads of energy. I was almost unstoppable and few people could keep up with me even at age 47. I was also very flexible, I could do men’s push ups repeatedly, I could kayak, and fish, I went on zip-lines…I took risks, I wasn’t afraid to try new things. I had two tattoos and rode a motorcycle as a passenger with my husband all over Ontario. We used to go camping into remote areas of Canada…I have fed wild caribou on the Slate Islands and lunched with Eagles sitting in the trees…and now, suddenly, over-night this all changed for me. My health was turned completely upside down immediately after taking Ciprofloxacin. I could no longer do ANY of these activities that I had once enjoyed. Can you imagine what would happen if I had been a gold-medal Olympic athlete when I took Ciprofloxacin? My CAREER WOULD BE OVER!
Some days, when my husband was at work and I was home alone, I would study myself in the mirror and I didn’t feel like ME anymore, I felt disconnected somehow, as though I was observing myself from outside my own body. I felt like I was in a dark tunnel. Who was this sick, elderly person? I didn’t even know this woman or recognize this woman. What I was experiencing is called De-Personalization and also derealization. I had difficulty feeling intense emotions like I once did. I used to be accused of being too intense due to my wide range of emotions…but now I was somehow flatlined and felt emotionally numb. I had brain fog. My brain felt like I had cotton stuffed in it. I couldn’t keep my focus on what I was doing or follow a conversation. And…whenever I asked my husband for his opinion as to what he thought was happening to me, he said, “I don’t know…maybe menopause?” It seemed logical, but I was only 47 years old, I was still getting my periods on time, every 28 days and I still had a very active sex life with my husband. I thought menopause was more of a gradual process, not something that came on SUDDENLY and with such ferocity. And also menopause did not come with the array of symptoms that I was experiencing. I was even hoping that I might have another child as I was a very healthy and youthful 47 year old woman. But alas, this was not to be!
At other times I would blurt out incorrect statements, like the time I was washing the dishes and told my husband that the laundry would soon be done. The LOOK on his face told me I didn’t say something right and then i would CRY because I thought I was showing signs of Dementia or early onset Alzheimer’s disease. Another time I put bleach in with our dark load and ruined a load of laundry. I was a very capable person once. I had a large vocabulary, was an excellent speller and reader. I had a high level of reading comprehension and excellent communication skills as well as excellent listening skills. My memory was sharp. I could recall small details and dates that others could not. I had confidence in my own abilities and was a perfectionist…but now, I was putting bleach in dark loads of laundry and having difficulty following conversations. My self-confidence took a nose-dive and I had to abandon my perfectionism to settle for what I was able to do NOW. My housework suffered and I needed to take several naps during the day like an old woman of eighty, instead of the active 48 year old that I used to be. Clearly, I had changed and not for the better.
One of the scariest moments was one afternoon, I fell asleep on the sofa, I remember that I was on my back, my feet and legs were over my husband’s legs, I was snuggled under a thick crocheted blanket. When I awoke, I was over-heated, but I couldn’t get my arms to respond in order to push off my blanket. I couldn’t move my legs to alert my husband that I was too hot. And then…I couldn’t open my eyes or speak. I was intensely afraid and panicked which then made it difficult to breathe…I felt that I was suffocating. I could hear the TV and my husband sniff and felt him shift his weight…but he couldn’t hear me…I was trapped in a place that was frightening to