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 me. My husband could not hear that I desperately needed his help even though I screamed out for help. Maybe I had a stroke? This terrifying episode lasted for what seemed like a long time, but was probably only a few minutes before I could finally open my eyes and move my arms. I was very emotional when I could finally tell my husband what had happened. He was very supportive, told me that I had only been sleeping for about 20-30 minutes, but to me it felt much longer, more like several hours.
Unable to shake the terrifying memory of what happened to me, I later I googled what I had experienced and discovered- “Sleep Paralysis.” It is when you wake up and can’t move. That’s it in a nutshell, I said. Apparently, it occurs when part of the brain is awake, BUT the parts controlling your body are still asleep. When you try to move during sleep paralysis, you are unable to for several seconds, or even for a few frightening minutes. When I read that this can happen as a result of “specific genetic changes,” triggered by “sleep deprivation,” “psychologic stress,” or “abnormal sleep cycles,” or from perhaps “anxiety,” I began to worry even more. Was my adverse reaction to Ciprofloxacin causing genetic changes?
Further, I read that people who take certain medications can be more likely to experience sleep paralysis. Prescription medications, and recreational drugs can actually increase the risk of sleep paralysis. I googled, “drug induced sleep paralysis,” and found this on MedLink.com,
“Sleep may be disturbed as a sequel of other drug-induced adverse drug reactions. For example, patients with movement disorders may have difficulty sleeping and patients on diuretics may have to get up frequently at night to urinate. This article describes sleep disorders associated with the use of therapeutic drugs. The information is based on a review of the literature and on reports of adverse reactions received by pharmaceutical manufacturers. The causal relationship is not proven by the usual scientific criteria, but the list of drugs should be considered during investigation of patients with sleep disorders.”
The International Classification of Sleep Disorders ICSD-3 mentions “sleep disorders resulting from a drug or substance” under 5 categories, but it was the fifth category that interested me the most–:where it mentioned “sleep-related movement disorders” (American Academy of Sleep Medicine 2014).
“Drug or substance” can be a prescription medication, recreational drug, caffeine, alcohol, or food item or exposure to an environmental toxin. Drug-induced sleep-related movement disorders such as excessive movements of limbs, restless legs syndrome (RLS), or myoclonus.”
BINGO! I have suffered from RLS for years, since puberty, it was only mild, quite controllable, but since taking the Ciprofloxacin (a prescription medication), my RLS episodes have become more frequent and last longer than ever before which keep me awake! And further, I was now experiencing myoclonus jerking in my legs and also hiccups. No matter the cause of the sleep paralysis, and I KNOW that mine was not caused by caffeine, alcohol or recreational drugs…I did not want a repeat episode! I knew I needed to sleep better, at least six hours or possibly eight hours of uninterrupted sleep per night. As I know that healing is greatly improved with sleep. But now I was actually afraid to fall asleep incase I experienced another episode of sleep paralysis, which thankfully did not happen again. But, for months after I suffered from insomnia or the ability to stay asleep for longer than five hours per night and was often awake with either my RLS and/or my myoclonus jerking.
I also had debilitating headaches and migraines, that started about mid February, 2014. I had a migraine for 2 weeks solid that sent me to the eye doctor for answers. I received a prescription for new eye glasses for changes in my vision and was diagnosed with migraines. As the years ticked by, to 2018– My eye problems seemed to multiply. My eyes were dry and itchy–I couldn’t wear makeup anymore. I woke up to swollen eye lids every morning and sometimes stabbing pain. They became light sensitive. I had blurry vision and there was a biofilm that seemed to be inflammatory triggered that would creep up and block half my vision, but would go away when I reduced the inflammation. This was not the same as cataracts. There are warnings that FQ antibiotics can cause photosensitivity, I certainly have photosensitivity and must wear dark glasses when I am outside regardless of whether the sun is bright or overcast. I have been diagnosed with Meibomian Gland Dysfunction. MGD is a common eye condition where the eyelid glands, that secrete oil, get blocked with thick secretions. This is the biofilm that I described above.
For my dry eyes, I have to make use of a special lubricated eye drop formula. According to my eye doctor I have narrowed angle drainage allowing a build up of fluid. There is fluid trapped behind my eyes which the optometrist would like to drain with a laser treatment. But because of my adverse reaction to Ciprofloxacin, I cannot complicate my health situation by using steroids and my doctor will not do the procedure without using steroids. He did tell me that the laser surgery is risky and may cause scar tissue resulting in auras or spots, and making my eye sight problems worse and not better. He cannot do the final test to check for glaucoma without draining this fluid and lowering the pressures allowing him to see into my eyes with a special mirrored gadget and use dilating drops. Besides, all eye surgery needs an antibiotic and guess which antibiotic is the favored choice? You guessed it…Fluoroquinolone eye drops. (FQ eye drops to avoid- Besivance (besifloxacin); Cetraxal, Ciloxan (Ciprofloxacin); Iquix, Quixin (Levofloxacin); Ocuflox (ofloxacin); Vigamox (moxifloxacin); Zymar (gatifloxacin); and Moxeza (moxifloxacin) ) My eye pressures are– 16 in my right eye, and 18 in my left eye. Anything measured 20 or above is cause for alarm and could indicate glaucoma. I have been instructed to return every six months to check my pressures, but OHIP doesn’t cover eye care.
There are things that I can do to manage the MGD– I am increasing my omega-3 fats from 1 tsp. to 2 tsp. daily (which I can not always afford to buy fish oils), this has the added advantage of helping my arthritic joints as well. I was only taking 400 IU Vitamin E, but will have to increase that to 1500 IU which is the upper range. I also should increase my B12 to 2000 mcg (at least on a temporary basis). Other things to try include- lid scrubs using lid scrub towelettes or baby shampoo applied to eyelid with a cotton swab (Q-Tip) or clean fingertip. Hot compresses for 5-10 minutes daily. Using lubricated eye gel formulas for my dry eyes. Drinking plenty of non-fluoridated drinking water at room temperature. Protecting my eyes from the wind. Using a humidifier in my bedroom. And finally taking eye care supplements that include- Lutein and Bilberry.
But the most disturbing of all the eye problems…was his declaration that I had retinal disfunction and permanent optic nerve damage and that I will eventually be BLIND. That I would start having increasingly more optic migraines before I lost my eye sight and if the pressures in my eyes build to 20+ I would likely have intense pain that will send me to the ER.
A simple visual screening test called Functional Acuity Contrast Test (aka FACT), is a well established analysis used by ophthalmologists. The patient is asked to look at a series of greyish lines of decreasing clarity. If the patient is unable to see the lighter lines that normal people can, this indicates poor retinal function and has been closely linked to biotoxicity. I could not see the lighter lines during the FACT test.
What does Mold (which is a biotoxin) share with FQ toxicity? Fluoroquinolone Toxicity is a synthetic toxin. Dr. Ritchie C. Shoemaker (author of Mold Warriors) has discovered a whole series of biochemical tests that show the patient is experiencing an inflammatory reaction to toxin. And this toxin could be a biotoxin such as mold, or it could be a synthetic toxin such as from a Fluoroquinolone which has been cooked up in a Lab. The combination of quinolone and fluorine (a derivative of fluoride, but not the same as) that was later added to the antibiotics (as a potent delivery system)…has created (in my opinion), …a LETHAL drug that seriously damages the human body! But because no tests can prove this toxicity, no Doctors recognize this synthetic toxin as a threat. Perhaps we should take a look at the FACT test as possible evidence for those who are experiencing an inflammatory response to a synthetic toxin? Mold is not easily diagnosed either and without a clear awareness of mold toxicity, doctors treat patients with antidepressants and other medications that might take the edge off their symptoms, but unfortunately, cannot provide the definitive help these patents so desperately need. Fluoroquinolone toxicity is every bit as hard to diagnose as Mold toxicity and patients are just as desperately needing proper diagnoses. Our medical community has difficulty embracing new concepts, and this is a perfect illustration of how the reluctance to accept new ideas can hinder a patient’s ability to obtain correct diagnosis or treatment (which currently doesn’t exist for Fluoroquinolone toxicity), but some doctors know how to treat patients for mold toxicity.
Some people suffering from FQ Toxicity have worked out that many of us might have something in common. And that is an MTHFR Gene Mutation, that essentially means that our detox pathways don’t work properly. It is estimated that only 25% of patients are genetically unable to make the antibodies they need to detox these toxins, which would seem to vindicate pharmaceutical companies that claim adverse reactions are rare. Except for one thing…many others do NOT have a gene mutation and yet were also injured/damaged by a Quinolone or FQ Antibiotic. I however, (as previously stated,) do not detox well. Many medications stay in my system overly long, and for this reason, I cannot take cold medications or any drug that causes a sedative effect. I am also allergic to the NSAID’s- morphene and codeine as well as sulfa medications used for Urinary Tract Infections–which was why I ended up with Ciprofloxacin.
Many a time, in early 2014 did I fear that I would end up in a wheelchair, I was worried about being a burden on my husband and son. I was worried that I was going to end up in longterm hospital care or worse, that I would die. I was also worried about the financial burden that this would place on my husband. And some days I thought that suicide might be a relief. Fortunately I never attempted the worst case scenario. I have a strong Christian faith in Jesus, and I had a loving family that would never recover from my suicide. Fortunately, I held on to what HOPE I could, and in the summer of 2016…I saw much improvements in regards to my health that are the result of my own care, with no help from doctors. But does anyone know how difficult it is to do research, to understand medical jargon without schooling? And to do this while sick, in pain, and exhausted? In my library profession I am neither a doctor nor medical researcher, yet in a sense I was forced to become both in a quest to regain my health. All I wanted was for one doctor to believe me and to help me, but none would. Yes, I am greatly improved, but still I grieve for my previous happy, active and pain free life. I still have ongoing medical issues that require the help of a medical doctor and I still have financial difficulties because my disability is not recognized by Health Canada.
These have not been easy years for us…we lost our beautiful house in Kitchener because of our combined health problems, we had to declare bankruptcy. We were homeless Christmas 2015 and a friend took us in until the spring of 2016. The stress of losing everything was incredibly difficult. We had to sell many of our treasured belongings and find a new home for our dog- Rizzo. We were forced to move to a smaller, less expensive city far from my family and friends…so no support in our new home. Now we live in a small northern Ontario city, we rent a two-bedroom apartment in a less than desirable area. My husband is working again and we are making our bills, but we have a very tight budget. Its hard to afford the things I need like healthy food and supplements. Sometimes I only eat one meal a day to save on money for supplements. Unfortunately, I am unable to hold down a job, even one that is part-time due to my PTSD. I am currently seeing a Therapist who is helping me to work on strategies to combat/or reduce my anxiety. I have a deep mistrust for pharmaceutical drugs and medical doctors, I detest going to the hospital. I am very much into natural herbs and medicines now and I do not take any synthetic medications for fear of them causing more damage, not even tylenol. I prefer to use warm spices (herbs) that reduce inflammation. I deal with chronic pain by taking Boswellia (which is an Indian form of Frankenscence). I only see a medical doctor now when I absolutely have no choice but to do so and then only for tests. Written prescriptions usually end up in the Waste bin as I rarely get them filled. Its risky going to a hospital for two reasons–getting sick while sitting in the waiting room with people suffering from colds/flu; and having to advocate against being given medical drugs while trying to obtain a diagnoses. It is exhausting going over my allergy list only to be ignored or more…laughed at.
Sometime between 2016-2017—- I had to visit our Timmins Hospital for the first time. I was appalled at the unsanitary state of this hospital, but I had abdominal pain…I wasn’t sure what the source was and I needed to wait to be seen. This was the last time that I received the NSAID- Toradol. I had informed the Intake Nurse of my allergies to painkillers and so I wasn’t expecting to be given anything. A nurse came and gave me a shot of Toradol in my leg without checking with me. I tried to refuse it and she insisted and jabbed me extra hard in protest. The injection crippled my leg. They then left me naked on an exam cot that had the bottom half removed (for a female exam)…here I was balancing on a cold exam cot shivering like a leaf, crying, and in horrendous pain from intense muscle spasms emanating from the insert wound. And…I had to pee. I called out for assistance, I wasn’t sure that I could walk. No one came. I somehow managed to get off the cot and dragged my non-functioning leg to the bathroom to relieve myself. When I came out, there was no one around, some of the lights had been turned off. I could hear one woman vomiting in her curtained stall, the rest of the patients were sleeping. There were no nurses to ask for a warm blanket. So i returned to my exam room, still shivering. My nails were blue and I was shocky. My leg was still in spasm and the Toradol had not taken away my pain from my abdomen. I waited for my ultrasound. Finally they took me down (it was around 1;30am) and I had kidney stones. When I was finally released, I hobbled out of the ER with my non-functioning leg and swore never to return…even if I was dying. It was one of the worst ER experiences of my life besides the time they made me wait 11 hours for a D&C after I lost my first baby with no food. But…of course I have had to return. Each time my VOICE gets stronger, but the bad experiences continue. Once I was handed a urine sample that didn’t belong to me. Another time I was placed in a waiting stall where someone had vomited and it wasn’t cleanup prior to me being sent there. Other times I have had tests disappear and have had to repeat them. Is there any wonder why I hate hospitals? The waiting times to see a doctor are too long and then when you do see a doctor he is so busy he doesn’t have time to answer questions. My cousin’s wife was sent home from a hospital only to have a massive heart attack and died. She left a husband with six children to raise on his own. Our medical system is a sick joke!
Since the sleep paralysis can happen as a result of a prescription drug, I wondered if anyone else might have had the same reactions from their antibiotic. When I went searching online…What I discovered about Ciprofloxacin terrified me. I read about permanent damage caused by fluoroquinolone’s. I read about the drug causing mitochondrial damage, likely oxidative stress and this might be correlated with patients who do not metabolize the FQ scaffold as well as the general population. This then could easily explain how the drug is able to build up intracellularly, and since mtDNA are always dealing with the effects of their metabolic role, they are vulnerable to being overloaded. It’s worth noting that mtDNA have bacteria-like ancestry, so they are certainly not guaranteed against large antibiotic concentrations. And of course, the longer the drug stays in your body before it finally finds a slow exit, the more time it has to cause damage. Indeed, bactericidal antibiotics in general have been associated with oxidative damage and Big Pharma has been trying to solve this problem. I also read about warnings of spontaneous tendon ruptures, permanent tendonitis (July 2008, 1st Blackbox Warning by the FDA), warnings of risks of mental health side effects and serious blood sugar disturbances, causing hypoglycemic coma, risk of worsening symptoms for those with myasthenia gravis– ALL from FQ antibiotics. The first black box warning came about after Congressional Hearings were held in regards to this drug. The warning was therefore hard-earned by people who were willing to voice their concerns. Reading about drugs can almost be like reading a boring dictionary. After a while, the textbooks are just words. When we make these situations PERSONAL and PUT STORIES behind them, they come to life and have meaning.
In August 2013, the FDA required updates to the labeling to describe the potential for irreversible peripheral neuropathy (serious nerve damage). In 2016, the FDA enhanced warnings about the association of FQ’s with disabling and potentially permanent side effects involving tendons, muscles, joints, nerves and the central nervous system and further said that for things like uncomplicated urinary tract and sinus infections that the risk of serious side effects outweighed the benefits for patients and should be reserved for use in patients with serious life threatening infections or who have no alternative treatment options. These antibiotics are not only being used on humans, but veterinarians are also using them on our beloved pets, and farmers are also using them on farm animals that become our food source! FQ Antibiotics are available as- oral pills, IV varieties, and even drops made for eyes and ears. These should never be given to children or the elderly (60+), yet they are. The most recent black box warning was issued in April 2019 stating that these drugs can increase the risk of rupture or dissection of aortic aneurysms. The pathophysiology of aortic aneurysms and dissection could be influenced by FQ’s because the aorta’s integrity depends heavily on an intact extracellular matrix. Fluoroquinolone’s induce degradation of collagen and other structural components of the extra cellular matrix.
Seeing as FQ toxicity is a syndrome and has a constellation of symptoms, it’s likely that there is a failure cascade that occurs post exposure to fluoroquinolones. It’s possible that this failure cascade is triggered by gut biome destruction, mitochondrial depletion, fluorine overload, depletion of cellular magnesium and iron, or another mechanism. Frankly, no one knows for sure the exact mechanism for FQ’s leading to multi-system chronic illness. It is not entirely understood because there isn’t enough research. There are many plausible mechanisms for FQ Toxicity if you start taking a closer look.
As for the gut micro-biome–My personal research has uncovered that it takes anywhere between 2-12 months for the gut to fully re-populate beneficial bacteria in the numbers needed for good health, and this is true of ALL ANTIBIOTICS, however some much needed strains may never return after using a FQ classed antibiotic.
Researchers at Stanford screened more than 900,000 genetic samples from the stool of healthy men and women who took the antibiotic CIPROFLOXACIN. They found that most of the gut micro-biome returned to normal after only four weeks, but that numbers of some bacteria still remained depressed even up to 12 months after. Another study demonstrated that even a short course of the antibiotic Ciprofloxacin reduced the diversity of the intestinal microbiota, with significant effects on roughly 1/3 of the bacterial species that failed to recover after 6 months or more, suggesting that even a short course of this antibiotic may cause permanent changes to the community of friendly flora in the gut.
One of these important strains of bacteria is called: Oxalobactor formigenes. This bacteria is an oxalate-degrading anaerobic bacterium that colonizes the large intestines of numerous vertebrates, including humans. The broad spectrum quinolone antibiotics kills O. formigenes and could be the reason that my body repeatedly develops kidney stones. We must discover a way to re-colonize these important bacterial strains if we want to find any type of healing post FQ toxicity. Perhaps drastic measures will need to be taken by offering patients fecal transplants from healthy donors? Incidentally, I discussed with my Specialist recently whom I had been referred to for my kidney issues about Oxalobactor formigenes bacterium and he replied, “thats just a theory, we don’t really know if thats what is causing reoccurring kidney stones.” I don’t think he appreciated my self-taught education as some doctors really do have God-complexes and have no interest in a patient-doctor partnership.
Sadly, Canadian Doctors do not recognize Long-Term Fluoroquinolone-Associated Disability (FQAD), despite the many black box warnings issued by the FDA which started in 2008; and the USA ‘s recognition of the disability on their side of the North American border. Health Canada warned doctors of “rare” cases of persistent or disabling side effects in January 2017 and yet they are still being offered for uncomplicated Urinary tract and Sinus Infections today. Recently (late 2017) I was offered Ciprofloxacin for a UTI, which I refused and requested another, but not before my Doctor blasted me for reading about drug dangers on the internet rather than trusting her expertise. So, here in Canada, there is no real help for those suffering from disabilities related to adverse drug reactions to this class of antibiotic. Patients are shuffled off to countless doctors appointments, seeing many specialists for different body parts and are often being misdiagnosed with things like Fibromyalgia, MS, and Lupus.
Canada does NOT have a good history in safe guarding the public from dangerous prescription drugs. As once again Health Canada is slow in heeding the stern warnings against these drugs, much like they were when Thalidomide was withdrawn after thousands of mothers gave birth to disabled babies. Canadian doctors began to receive samples of Thalidomide in 1959 but sales did not begin until April 1961, under the names Kevadon and Talimol. The licensee was the Merrell Company, based in the United States. But, by April 1961, there were already warnings about Thalidomide and malformed babies, as well as nerve damage in adults. On Nov 27, 1961, Grunenthal withdrew the drug from the West German market. A few days later it was also off the market in the U.K. and Australia. However, in Canada the drug remained on the market until MARCH 1962 and was responsible for over 100 children born with severe defects. This was something that was in the NEWS, so it wasn’t exactly something that could be easily swept under the carpet.
My own grandfather died from a stroke that was caused by his using Voltaren gel. Voltaren, as with other NSAID’s, there may be an increased risk of serious or possibly fatal cardiovascular events, heart attack, or STROKE with the use of Voltaren Gel…and these can happen without warning. There were also warnings and precautions, and also adverse reactions to Voltaren, yet its still on the shelves being sold over the counter here in Canada. I had to sell it to people when I worked at a grocery store/pharmacy combo…and I wanted to warn people about its use because of what happened to my grandfather and was forbidden to do so. If Health Canada says that its safe to be sold to the public, who am I to disagree?
This just goes to show you how closely Canada pays attention to the dangers of prescription drugs as Fluoroquinolones received their first black box warning by the FDA back in July 2008! How many people have to be disabled or killed by this class of antibiotic before Canada will take action? And how much money is it costing Canada in medical costs to treat disabled patients affected by fluoroquinolones and other dangerous drugs? Countless doctor’s appointments and surgeries, wheelchairs, medicines, and even disability cheques for those who can no longer work? How much is Canada spending on these things?
The European Medicines Agency (EMA) published the results of a safety review, 15 Nov 2018 which has led to a ruling that due to disabling and potentially permanent side effects, suspension or restrictions of quinolone and fluoroquinolone antibiotics are necessary. And that patients who have previously had serious side effects should avoid them. Yet my husband must advocate for me while in hospital because despite telling them of my adverse drug reaction and also listing them as an “allergy,” they still insist on prescribing them, not heeding any warnings. So obviously, the message isn’t getting through. Why? I suspect it all comes down to greed over morality.
We don’t know WHY some people experience an immediate adverse drug reaction, while others experience one– weeks, months or even years later after taking multiple prescriptions of the same antibiotic. Delayed reactions are hard to trace back to an antibiotic (that many doctors believe should have left the body without causing injury). As a result of this attitude of impossibility, meaning that—-RARE reactions must equal that doctors are so unlikely to ever see an adverse reaction that the odds must be nearly impossible, family and co-workers assume their loved ones “illness,” must be all in their heads. They mistakenly accept the doctor’s (who is supposed to be the expert here) determination/diagnoses. No proof via testing can only mean that the patient’s problem is stemming from a mental issue such as anxiety or depression or that the patient is a hypochondriac. After all, everyone wants proof right? All we have is our VOICE but for some reason our voice is being lost in the wind. These patients feel like no one is listening to them, including their physicians. The trouble is that no one is listening. This adds even more to their burden of suffering, often tearing up families and friendships, which makes them even sicker. Now they are sick and depressed, but we can clearly see which came first. It is difficult to try to fight a synthetic or biotoxin illness, and even more difficult when no one believes you are sick.
A quote made by a friend (Lisa Bloomquist, and given permission to use) who is also suffer(ing/ed) from FQ Toxicity that mirrors my own thoughts on the rarity of FQ Toxicity– “I’ve come to hate the word RARE. As in, “Your reaction is RARE,” or “those side-effects are RARE,” or “it’s RARE for someone to suffer from adverse effects from Fluoroquinolones.” It’s such a dismissive thing to say, although we hear it all too often. As if it’s okay for this to happen as long as it’s RARE. As if it’s okay for a certain number of patients to be collateral damage as long as the devastation that they experience is RARE. As if it’s okay for there not to be any research or resources or justice or answers to questions because the problem is RARE. As long as what you experience is labelled as RARE, it doesn’t matter. Your experiences, your pain, your health, stops mattering. You become statistically insignificant.” I AM NOT MERLY A STATISTIC ON A CHART, I AM A HUMAN BEING and I deserve the respect to be listened to, and also deserve to have research, resources, help- both medically and financially, and certainly answers to my questions! We are sick and we are scared and we need medical assistance and recognition of Long-Term Fluoroquinolone Associated Disability in Canada and indeed worldwide.
HOWEVER, I do NOT belief that reactions are RARE as I belong to an online support group that is over 11,000 strong. Here thousands of people who have fallen ill after FQ treatment gather to share experiences. Many of them describe a devastating and progressive condition, encompassing symptoms ranging from psychiatric and sensory disturbances to problems with muscles, tendons and nerves that continue after people have stopped taking the drugs. We call it being “Floxed” or we refer to ourselves as being “Floxies.” It comes from the last part of the drug- CiproFLOXacin. Also, I meet people in public every day that have similar symptoms as myself that have simply not connected the dots and figured out that their mystery symptoms are a result of them taking an FQ Antibiotic. And when you do point it out, they shake their heads in disbelief. Why? Because antibiotics are so trusted by the public as the cure for every infection known to man, such a God-save invention…that they cannot believe an antibiotic could hurt them. Yet I personally know four elderly people who died directly after receiving this antibiotic in their IV’s. There organs just…shut down. I also have made friends with some in our support groups that have sadly committed suicide. Many people affected have family and close friends that do not believe the true reason behind their illness and many marriages have ended. I feel that this is a dangerous drug and I for one, would like to see it pulled from the market as I think we can do better.
I know that many Floxies would like to see Fluoroquinolones RESTRICTED to hospital use only, But we cannot forget that in rural areas of Canada, where access to doctors is limited, or in places like (Timmins, Ontario, where I live) and have doctor shortages—we have no choice but to make use of the hospital for non-emergency visits. When I get sick, I have no choice but to head to the hospital where I am seen by an ER doctor for things ranging from the flu to uncomplicated UTI’s– and where they have no access to my medical records. It is at “the hospital” that you are likely to come home with a FQ antibiotic (despite restrictions, blackbox warnings and even disclosure of allergy/adverse reactions by the patient) because the ER’s main purpose is to see patients in REAL LIFE THREATENING EMERGENCIES and were never meant to see patients with the flu or colds. A quick antibiotic is often given just to clear out another cot or exam room to fit in the next patient in the over-crowded waiting rooms! Doctors have no time to keep up on the latest drug information or to pay close attention to fine details (which to them are insignificant) if its a matter of life or death. They are trained to respond to the most dire of circumstances and dismiss the healthy that they feel should be seeing their family doctor, in other words…these “healthy” patients are not their responsibility, although the government has made it there responsibility.
I understand that Fluoroquinolone antibiotics are the ONLY antibiotic that can treat an aggressive bacteria called pseudomonas. Pseudomonas is a SUPERBUG that can cause fatal infections. Therefore the FDA and Health Canada cannot remove it from the market under these circumstances. So here is my BEST ADVICE to keep the public safe–
#1 DO EXACTLY WHAT THE FDA/Health Canada SAYS. The FDA have put a black box warning on Cipro and all the fluoroquinolones. Make sure that they are never being given to patients unless they have a life threatening infection like pseudomonas, or anthrax.
#2 Make sure that FQ Antibiotics are only being used as a last resort.
#3 Make sure they are not being given to children (and that means not in eye or ear drops either). #4 Make sure that they are never given to the elderly.
#5 Make sure that they are never given to anyone who is an Olympic Athlete.
#6 Make sure that they are never given to patients with a severe Magnesium deficiency.
#7 Make sure that they are never given to any patient suspected of delayed detox pathways–people with IBD/IBS or Kidney problems (renal reductions), or Liver disease.
#8 MAKE SURE THAT EVERY DOCTOR IS NOTIFIED AND MADE AWARE OF THIS IMPORTANT INFORMATION.
#9 MAKE SURE THAT DOCTORS KNOW THAT REACTIONS ARE NOT RARE.
#10 TREAT THIS POISON EPIDEMIC SERIOUSLY SO THAT WHEN PATIENTS GO TO THEIR DOCTOR WITH AN ADVERSE DRUG REACTION THAT THEY ARE NOT BEING DISMISSED.
#11 Teach Doctors to recognize a drug reaction and to take the appropriate action. I.E. FQ Toxicity- Magnesium, NAC + vitamin E and trace amounts of zinc.
#12 LASTLY- perhaps every time a provider writes a prescription for a quinolone they should be forced to also write on the prescription the type of infection being treated. Then the PHARMACIST could double check for any adverse reactions/allergies and make a determination between–if the situation is complicated and serious /versus/ simple and easily cured with a safer antibiotic. Then the prescription can be changed BEFORE a patient is hurt.
This is how the medical system SHOULD OPERATE in order to safe guard the public, but it doesn’t. Right now, the drug is being given out like candy to healthy people that have uncomplicated infections and its undermining their health and ruining their lives. This needs to STOP! For who knows the implications this drug will have on future generations? Will our population even be able to pro-create?
To complicate matters, like many chronic conditions, my Fluoroquinolone Toxicity symptoms tends to ebb and flow in severity–some days, weeks, and months go really well, and during others it’s difficult to work, socialize, and function, confusing those who can’t “SEE” why one day is good and another a challenge. Its been six years since I was poisoned by Ciprofloxacin.
Update- August 2019–Many of the early symptoms have disappeared for me. I no longer have panic attacks, as my digestion is improving with much work on my part that involves a healthy diet and some key supplements and probiotics. I have muscular-skeletal changes, my walking gait has altered, but at least I am able to walk again and without a cane. I still have left hip joint pain and a sciatica issue. But, I am able to have sex again as I can find a comfortable position that doesn’t have me screaming out in pain. Thankfully, we have a very good marriage, my husband is very supportive and we are able to express love in many ways that do not cause me undue pain. I am delicate and fragile. I still have low energy levels. I still have occasional insomnia. I also have system wide inflammation and ongoing digestive and bowel issues–IBS/and Celiac. My most recent blood tests have confirmed that I have further reduced kidney function with high vitamin B12 levels of (893). Just three years ago, I was anemic, and needed to supplement with B12 and Folate, and now my B12 levels are too high?
My recent visit to a Specialist (Sept 9, 2019) confirmed that my creatinine levels (blood and urine) were a high 185 on August 10th and then two weeks later, had reduced to 94. He measured my GFR as “stage 3a,” but wants me to retest my creatinine levels every 3 months. He does not want to see my creatinine levels to rise above 94, although he will be okay with slight fluctuations. In the meantime, I am to stay hydrated, drinking plenty of water at room temperature. Some of my pain is coming from low back pain and I am showing many more signs now of a magnesium deficiency. I have been doing some research and have plans to correct this deficiency (*see magnesium paragraph below). The Specialist made sure that my kidneys were not swollen and that I was not retaining water in my ankles…all promising signs. I have two kidney stones in my left kidney and one in my right, plus scar tissue from repeated kidney infections/antibiotic use and/or it could be caused from Endometriosis which can spread outside the uterus to the nearby organs. However, now that I am menopausal, my Endometriosis is in complete remission. He advises me not to take any prescription drugs so as not to overwork my kidneys. If I need painkiller, use only Tylenol as needed, but use it sparingly. My potassium was NORMAL at 4.5, but he is checking my calcium levels as I am currently supplementing with Vitamin D. He wants me to continue with my healthy whole foods diet and to keep inflammation at bay.
I may have found a supplement which might save my eye sight, its called TUDCA (Tauroursodeoxycholic Acid). Systemic administration of TUDCA preserved photoreceptors after retinal detachment, and was associated with decreased oxidative stress and caspase activity. TUDCA may be used as a novel therapeutic agent for preventing vision loss in diseases that are characterized by photoreceptor detachment. However, I am currently saving my money to purchase it and probably should do more research, however this looks promising–
TUDCA is a water-soluble bile acid found naturally occurring in the human body. TUDCA aids in biles biological purpose, emulsifying fats in the intestine to help with absorption. TUDCA has been implicated in a wide range of beneficial liver function and metabolic effects that support the overall health of the body. For example, TUDCA may improve insulin sensitivity in the liver and muscle cells, preferentially over adipose cells, diverting excess nutrients to muscles rather than fat stores. TUDCA protects against bile acid induced cell damage and death, lowering risk of liver damage and disease. TUDCA has also been shown to lower cholesterol levels. *It also supports eye health, neuron health, insulin sensitivity, detoxifying your body, and even reducing stress levels.
I am trying a new antioxidant called Xanthohumol (found in hops flowers) which is 200x more powerful than Resveratrol (which is a flavonoid found in red wine). Although hundreds of scientific studies focusing on Resveratrol have been conducted, discrepancies in the efficacy of Resveratrol may be due to its inability to dissolve in water and the short window of bioavailability upon ingestion–only 3 1/2 hours. That is why the benefits of Resveratrol are attributed to dark red wines because the alcohol drives the Resveratrol in quickly and makes it useful to cells. Research into Xanthohumol has indicated that it is made most bioavailable by making it into water-soluble (and still fat-soluble) molecules. This highly bioavailable form of Xanthohumol is known as Luciden. Unlike other hops extracts, which are typically not bioavailable, Luciden has 12 hours to reach the cells once ingested…giving it a larger bioavailable window. You can do your own research on the benefits of this powerful antioxidant, as I am constantly doing my own research to find further healing.
I need be taking a Collagen powder of some type– as I am having connective tissue problems and experiencing collagen degradation. The powders are not affordable for me. Instead I settle for drinking organic chicken bone broth (or making my own), but these really do not have enough collagen in them and I am not able to drink one glass per day, every day due to limited finances. However, I did find some less expensive organic gelatin powder recently, which I am mixing with my bone broth and taking with a real fruit (Camu Camu) sourced vitamin C tablet. I have plans to make my own Collagen Gummies with either tart cherry juice or elderberries.
I also want to try a unique Magnesium compound that shows some real promise in reversing brain aging. Scientists have been surprised by the discovery that magnesium plays an essential role in supporting brain plasticity, which is the sign of a youthful, flexible brain primed for optimal learning, memory, and cognitive function. The good news is that raising brain magnesium levels has been proven to restore critical brain plasticity and improve cognitive function. In a just-published landmark human study, researchers showed that they could reverse brain aging by as much as nine to 14 years in magnesium supplemented people. Scientists at the Massachusetts Institute of Technology (MIT) found a novel way of overcoming the problem of getting magnesium loaded into the brain due to poor absorption. These researchers tested a unique compound called Magnesium-L-threonate and found it boosted brain magnesium levels by an approximate 15%. The article that I was reading (and shared with my online Floxie group) was entitled: Unique Magnesium Compound Reverses Brain Aging. June 2016 (Life Extension Magazine) by Jamie Rivington. This is good news for people with Alzheimer’s Disease as it could play an important role in the prevention of Alzheimer’s. But it is far from the only potential application for this supplement. Researchers also found that magnesium-L-threonate has beneficial effects for those suffering from PTSD (Post-Traumatic Stress Disorder). Sometimes when our brains form connections, they aren’t good ones. For example, certain objects or events (like experiencing an adverse drug reaction and having ones‘ health altered) linked with previous danger triggers fear memories. In healthy people, these fear memories fade in time as the object triggering them is experienced in a safe environment. (Perhaps this is the likely scientific explanation for the phrase “time heals all wounds.”) Unfortunately, in people who suffer from PTSD, that fear response does not fade with time. This is likely due to the fact that PTSD induces a sharp reduction in brain plasticity. Exciting research has demonstrated that magnesium- magnesium-L-threonate can help speed up this recovery process in people suffering from PTSD. This type of magnesium could be a novel supplement for those suffering from PTSD, anxiety, or depression. And of course, may be also beneficial for Floxies.
Magnesium is the 4th most abundant mineral in the body, is known to be a co-factor for more than 300 reactions catalyzed by enzymes, including those essential for energy release from food and conversion to cellular work through formation of adenosine triphosphate, or ATP, in mitochondria. Magnesium is also required for synthesis of DNA and RNA. Magnesium is especially important in all of our bodies’ electrical and electrochemical activities, including muscle contractions, heart rhythm, nerve conduction, and brain cell activity.
Magnesium was one of the very first supplements that I used after I was poisoned by Ciprofloxacin. I was showing signs of magnesium deficiency and so I started supplementing with magnesium bis-glycinate. However, I wasn’t absorbing it well and started to also use a topical version that bypassed my stomach and also Epsom Salt baths. You see, you need stomach acids to convert magnesium from an insoluble to a soluble form and the fluorine in my Ciprofloxacin had reduced my stomach acids as well as wiping out the numbers of both bad and beneficial bacteria in my gut. I had to figure out a way to increase stomach acids by using Digestive Bitters (bitter tasting herbs) in order to stimulate my stomach into producing more HC Acid. Then I had to figure out (all on my own, while sick) that certain foods and drugs can block magnesium absorption. I must make more changes to my diet, raise stomach acids and supplement with magnesium bis-glycinate… until my levels reach 6.0-6.5mg/dL in a range of 4.2-6.8mg/dL. You can have an RBC Magnesium Blood test done, but do not take any magnesium or soak in magnesium for 12-24 hours before the test. I want to supplement until I am no longer exhibiting signs of a magnesium deficiency.
I have had to become my OWN EXPERT in a field of natural health that became a necessity because I couldn’t find a medical Doctor to help me figure this out. Natural Doctors are not covered by OHIP, so Canadians who cannot afford to pay for their services out of pocket, are at the mercy of the medical system that treats the human body not as a whole entity. They diagnose illnesses and diseases, but does not practice illness or disease prevention. And a medical system that is in the business of prescribing pharmaceutical medicines that help slow down disease, but do not CURE it. Or dispense dangerous prescription drugs that ignore warnings by patients and even by governing authorities like the FDA. Why? Because there is no money to be gained by healthy people, only by sick people. Big Pharma is all powerful, they have the money and the power to continue to get exactly what they want. They are in the business to make money, its all about greed.
Now…When I try going for simple walks, I have to take my time…if I push myself for a brisk walk I get muscle fatigue and my legs just refuse to continue to propel me along without severe pain. It’s called shin splints (or medial tibial stress syndrome). The cause is stress on your shinbone and the connective tissues that attach muscles to your bones. They get inflamed and painful due to my weak ankles, stiff hip joints and weakened core muscles. I have to baby my feet and step lightly and carefully as my Achilles tendons sometime swell and become sore and I fear that I will develop a spontaneous and extremely painful tendon rupture that will end with me in a wheelchair after undergoing corrective surgery.
Recently, I was back to using my cane again and sometimes crutches as I had a medial collateral ligament injury. The MCL is a band of tissue on the inside of your knee. It connects your thigh bone to the bone of your lower leg. Only my injury was not the result of some physical activity such as a game of soccer, or an exciting holiday of downhill skiing…but simply because I was walking. I live with the unknown now. I don’t know what the future will hold in regards to my health, will it improve, or will it continue to decline? Will I still be alive in my 80’s and 90’s? Or will I be blind? Will I see the faces of my grandchildren?
Fq’s make us severely dehydrated (unbalance electrolytes), reduce stomach acids, kill off beneficial bacteria in the gut, cause nutrient deficiencies, create hormonal imbalances, thyroid and adrenal issues, PTSD, Mental issues, chronic pain in muscles and joints, tendon ruptures, blood sugar issues, serious heart problems, kidney damage, liver damage, turn on a host of autoimmune conditions and trigger disease…and these are just the start.
The reduction of stomach acids is detrimental to our digestive process. It makes it difficult for us to digest fats and without the ability to digest fats, near impossible to absorb vitamins and minerals (most especially fat soluble vitamins). The cleaning out of our gut flora creates brain fog, anxiety, depression and other bowel and digestive issues. Makes it near impossible to breakdown magnesium so that it can be absorbed by the body.
Stomach acids are meant to safe guard the intestines and liver from dangerous pathogens/bacteria from entering into an area where they don’t belong and where they can cause damage. So many people suffer from painful gas and bloating. However, these are the reasons our stomach acids are low– as we age (part of the natural aging process), our busy stressful lives (stress lowers stomach acids), synthetic pharmaceutical Antibiotics such as FQ’s, NSAID’s, Antacids, Other drugs for GERD like PPI’s or H2 Blockers, Vaccines, high sugar (refined/artificial), carbonated sodas, and other junk foods void of nutrients and loaded with glyphosate and other dangerous chemical additives, eating food cooked or stored in aluminum foil, using antiperspirants with aluminum (I only buy natural ones with no aluminum now), the absence of trace minerals (like boron and zinc) in our soils due to modern farming practices, drinking tap water full of drugs and hormones (people flush meds down the toilet and antibiotics show up in our urine), Fluoride Toxicity (fluoride treatments at dentist, drinking fluoridate water, using toothpastes, floss and mouthwashes with fluoride), heavy metal build-up, Smoking, and following a low-fat diet (especially those who have no gallbladders)…all of these things that we do contribute to low stomach acids (HC Acid). Hence, I do not take these anymore and avoid them all.
I discovered that when our stomach acids are low, there are no acids to protect us from bad bacteria that enters our mouth from our food (or even from poor dental/hand washing hygiene practices)…because without healthy levels of HC Acid, it isn’t strong enough to kill it. Also it cannot digest “healthy fats/proteins, it cannot monitor the illocecal valve, it cannot protect the liver, and it causes acid reflux in some people (GERD). Without the ability to digest healthy fats, our health declines because it cannot absorb the nutrients from our food/supplements. How long has it been since you last heard your stomach growl? This is your signal that your stomach is ready to digest a presented meal…and it best be a healthy meal. You can take the Baking Soda Acid Test at home—google it.
Start taking Digestive Bitters, 30 drops of Tincture on an empty stomach, wait 20-30 minutes for food. Do this before each of the three meals, but super important in the morning on an empty stomach. I use St. Francis Canadian Bitters, but you can also use Maria’s Swedish Bitters, or buy Moonshine variety. What are Digestive Bitters? Simply bitter tasting herbs, thats all it is. In fact bitter tasting salad greens (such as dandelion greens, mustard greens, kale, chard) are also considered bitters as long as they are eaten raw and not smothered in salad dressing.
Biters are not the same as digestive enzymes or HCL/with Pepsin, although bitters work very similar to the enzymes. As humans, we have bitter receptors throughout the body…in our intestines, in our colons, in our hearts, and on the backs of our tongues…for a REASON. We are meant to eat bitter foods, although our modern high sugar diets have had us move away from bitter. Cats eat grass, ever ask why? Its because they are meat eaters…and the grass is a bitter that raises stomach acids so that they can protect their systems from pathogens in raw meats like mice, birds, rabbits and snakes…which they eat and helps them to digest a high fat meal. Humans are no different. We were made to eat animal proteins and plants, we are omnivores. Our grandparents often ate bitter foods as well as fermented foods as well. There food was bland. Our food has to taste sweet or over-spiced with sauces, gravies and condiments. Essentially, we eat supposedly “like Kings,” or off the Kings Table now…and we need to eat like the Peasants did. Simple meals with Intermittent Fasting (as peasants didn’t always have food to eat). Also, we eat foods from all over the world, foods that are not indigenous to the areas that we live. I am not saying that we need to stop eating exotic foods, but I am saying that we need to pay attention to the foods we are eating and choosing foods that are more local. For example…blueberries grow where I live, so I should probably be eating more of these high antioxidant berries. More about diets later.
To preserve stomach acids, drink beverages 20 minutes following a meal and not during. Guzzling a big glass of water or having a sugary carbonated soda…will only further dilute those stomach acids from digesting your meal. If you must drink something during a meal, do what the Chinese do…sip on herbal teas. Besides Digestive Bitters, sipping on warm, freshly cut lemons in water or drinking a shot of apple cider vinegar will also work at raising stomach acids as well as stimulating bile production.
Organic Bone broth taken before or with meals can help facilitate digestion and restore your body’s ability to secrete sufficient stomach acid. The broth has important minerals, including calcium, phosphorus, and magnesium. These minerals can also help support your adrenal glands. Gelatin Supplements can help you restore gut lining that may be compromised due to “leaky gut.”
Remember that not sleeping or feeling stressed can be enough to perpetuate your digestive issues, even if you are doing everything right with your diet.
A word about low-fat diets–
A low fat diet was recommended to me by my surgeon who removed my gallbladder. That same surgery, they removed my healthy appendix without my permission, more on that later. Thankfully, I disregarded his low-fat recommendation as bile secretion is really important. The liver can produce less bile or stop creating bile when we eat a low-fat diet. Its like the body says “Oh, you aren’t eating fats? Then you don’t need the bile I am making to break it down…so I can stop.” This is not good! Bile is required to digest fats, and your body knows its a waste to release the bile in your gallbladder if you are eating a low-fat diet. Fats play an important role in a healthy diet as they provide energy, producing hormones, assisting brain function, and enhancing the absorption of fat-soluble vitamins like– A, D, E, and K, omega-3 fatty acids, CoQ10, beta-carotene and other antioxidants as well. Following the elimination diet protocol can help your digestive system heal and improve your tolerance to dietary fats.
When inflammation is not controlled, the body’s ability to make bile is compromised, and when inflammation is healed, the body’s ability to make bile improves. Bile is the major route of excretion for toxins and helps protect the GI Tract by secreting immunoglobulin A and stimulating the innate immune system in the intestines. This is one of our most important detox pathways.
When these secretions are impaired (Gallbladder removal) as they are in the presence of many chronic inflammatory illnesses, the body’s ability to detoxify is significantly hindered. Thankfully, there are ways to improve bile flow- Milk Thistle, Pantothenic acid (vitamin B5), Acetyl-L-Carnitine, Digestive Bitters, Raw Apple Cider Vinegar, Phosphatidylcholine, and finally Ox Bile Supplements (taken before a fatty meal) and or other Digestive Enzymes. Ox Bile and Digestive Enzymes might be a necessary adjunct to help you fully digest and absorb the fat and fat-soluble nutrients you need to heal your body. Probiotics and Fermented Foods are essential (but if you have no gallbladder and your body is producing less bile…go very slowly introducing these). Eat LIVER. Once per week can help you ensure that you are getting all the nutrients your body needs, including iron, zinc, and selenium, as well as various-fat and water soluble vitamins. All the nutrients found in liver are in their natural state, which makes them easier to digest, absorb, and use by your body than the synthetic versions usually found in supplements, especially if you are selenium sensitive…because the nutrients in nature are there in exact supportive quantities. Tip for Liver. Cut a healthy liver raw into bite sized pieces and freeze in a little baggie. Every day swallow one raw bite of liver whole, without chewing…just as you would do for a supplement.
Obviously, we don’t want to include bad fats in our diet, but only healthy fats. Special kinds of fats- Medium-Chain triglycerides (MCT) such as Coconut Oil, doesn’t need bile to be digested or absorbed, which makes it ideal for patients without gallbladders. When I first became sick from FTS, I put myself on a restricted Auto-Immune (an elimination) Diet that gradually progressed (as my healing improved) to a Paleo Diet. I had food allergies and other sensitivities due to my FQ toxicity. I had to slowly re-introduce foods that I reacted to. I never agreed with the low FODMAP diet for my IBS symptoms as I saw many problems with the diet. *I am now (October 2019) starting a KETO diet to lose some weight around my tummy area and also to help me kick my sugar habit to the curb. Hopefully the KETO diet, along with Intermittent Fasting will also help me reduce my inflammation and may even help me to improve my IBS which has plagued me for years.
Keep a food journal, it will be very helpful later on. Let FOOD be thy medicine!
DIET that I follow-I take some safe proteins (Organic, Grass-fed Highland Beef) Or (WILD sustainable) Fish like Salmon/Seafood-like Crab, Shrimp or Mussels, Organic Chicken, Rabbits, Goats, Lambs, or Wild Game- like Deer, and safe fats (organic coconut oil, Imported Olive Oil from Greece or Italy, Avocado, or Non-GMO Sunflower, Grape seed, grass-fed butter, or Ghee), Raw Nuts and Seeds (love raw pumpkin and hemp seeds (aka hemp hearts), Free-Range Eggs, and Vegetables and Fruit (Organic). Try to incorporate an antioxidant rich food with every meal. Herbs and Spices, especially warming spices that are anti-inflammatory like ginger, cloves, cinnamon, turmeric + black pepper, and Rosemary are great. Essentially all pain is caused by inflammation, reduce it and you reduce pain, hence the need for using warming spices. It is important that you avoid foods that trigger any kind of response- hives, rashes, breathing issues, or inflammation- these could be histamines, high oxalates, or even nightshade vegetables like- tomatoes, potatoes, peppers—that cause many people inflammation. I avoid most legumes as I don’t do well with them, but I do eat chickpeas (aka garbanzo beans) and are actually considered a pre-biotic food. I avoid cow dairy as I am allergic, lactose intolerant (It triggers my IBS) and it contains Carrageenan. I only chose natural sugars from fruit, unpasteurized honey and pure maple syrup in limitation. Sometimes a very little black strap molasses (as this contains some trace minerals). I drink non-fluoridated spring (Berkley filtered) water, coconut water, almond milk (I buy SILK brand), coconut milk, cashew milk, pure juice (not from concentrate) such as pineapple, tart cherry and pure unsweetened cranberry, organic chicken bone broth, Chicory (a coffee substitute that is very good for people with IBS), and also herbal teas, sometimes homemade sports drinks (with no dangerous dyes and sugars) and healthy Smoothies. I do not use table salt, but chose instead Grey Seal Salt from France or Pink Himalayan…as these contain trace minerals that the body needs. *Herbal teas that I love- Ginger, Chai, Peppermint.
I avoid MSG, Soy, Carrageenan, Refined/Artificial Sugar, Fluoride, Dyes, GMO’s, like high fructose corn syrups and Canola Oil, most Alcohol (although I will now, after six years have a little wine, or whiskey), limit coffee to one cup, usually organic coffee like Kicking Horse or Chicory (coffee substitute), I avoid carbonated sodas, pork, sausages with fillers, or wieners (hot dogs)–I will sometimes have uncured bacon and little ham. I avoid also cow dairy, potatoes, corn (unless its organic), flour, wheat and gluten- I am Celiac, and I avoid or limit anything that blocks magnesium absorption–so I soak my beans, and I steam greens like kale, spinach and chard, and I avoid all drugs, and some invasive testing, as well as to encourage healthy stomach acid production. I don’t eat Fast Food, Boxed Foods, Junk Foods empty of nutrients, I will choose occasionally KETO or Paleo treats low in sugar, and Gluten Free treats like GF Crackers/Bread, Chips, Popcorn. And I will sometimes have Rice and even make my own Paleo Rice Krispie squares with natural peanut butter.
To Balance Electrolytes–
Magnesium, Sodium and Potassium are the body’s principal electrolytes. We usually get too much sodium in the diet, and its the wrong kind! We need to replace table salt with sea salt or Pink Himalayan. Or we can also include Bio-Salts (aka Cell Salts) that are important support for minerals. Like magnesium, sodium replacement is key to healing from FTS damage because these drugs can cause muscle wasting that can lead to kidney damage. Muscle wasting makes the body dump creatinine and draws out sodium from the kidney. Salt reduces adrenaline levels and supports overall metabolic health. But don’t use iodized table salt. I make my own sports drinks and also my own healthy smoothies. Sometimes in my smoothies- I will open a magnesium bisGlycinate capsule (the powder inside), add a little sea salt, and mix these with coconut water, almond milk, antioxidant rich blueberries, and slices of frozen banana (instead of ice). Just make sure that your brand of almond milk doesn’t contain carrageenan. The bananas and the coconut water are high in food grade potassium. I would not recommend supplementing with potassium, instead eat foods high in potassium along with foods also high in magnesium like raw pumpkin seeds or pumpkin seed butter.
Hydration is really important. We should be drinking 6-8 glasses of non-fluoridated water per day, but at room temperature. But why? Drinking our beverages at room temperature helps our hydration starved bodies receive essential fluids immediately as ice cold drinks must sit in the stomach warming up before our body can utilize it. Experts say to opt for room temperature beverages, as when it comes to fluids, steer clear of extreme temperatures. When ice water comes into the stomach it constricts the arteries surrounding the stomach, which help the stomach function properly and help with water absorption. If you hear water swishing around in your stomach, it means the water is not getting absorbed!
I would recommend that you avoid as many Pharmaceutical drugs as possible, especially NSAID’s, Steroids and Benzos. If you are on Benzos…wean off very, very slowly and with doctors assistance. The less stress you put your body under by taking drugs, the better. Of course some medications will be necessary. Thankfully, I take nothing and I never did take many over the years, which is surprising how I ended up Floxed.
Two hours after your final meal of the day, take two heaping tablespoons of Sauerkraut (made only with water and sea salt) and never with wine or vinegar. Sauerkraut is considered Lacto-Fermented Foods and is loaded with live bacteria that serves as a food grade probiotic. You can make your own, its relatively easy, or buy Eden Brand. You can also incorporate other fermented foods throughout the day, foods like Kimchi, Kombucha beverages, and Bubbies Brand Pickles, Plain Yogurt made with coconut milk, or Kefir. Learn the difference between pre-biotic foods and probiotics, both have their important benefits. Think of pre-biotics as feeding the beneficial bacteria, and probiotics to help colonize beneficial bacteria. Of course, it can take anywhere between 3-12 months to re-colonize your microbiome after antibiotics, and some strains will never return after using a Fluoroquinolone.
Besides the fermented foods, I also take a high-dose, multi-strain, refrigerated probiotic supplement. The best that I can afford with as many bacteria strains possible. I look for these stains- Bacillus anthracis; Bacillus brevis; Bacillus cereus; Bacillus fusiformis; Bacillus licheniformis; Bacillus megaterium; Bacillus mycoides; Bacillus stearothermophilus; Bacillus subtilis; and “Bacillus Thuringiensis” Also a large range of Streptococcus bacterium, especially salivarius. And Lactobacillus acidophilus, bulgaricus, casei, lactis, peneumophila, and monocytogenes. Probiotics are shockingly expensive!
-Vagus Nerve Stimulation Exercises (like gagging, gargling and singing)
-Earthing (aka Grounding)
-Tiger Balm for headaches (helps somewhat)
-Lubricated Dry Eye Drops
-Sometimes I used DMSO to dab with cotton balls on tight muscles to drag in magnesium topical gels.
-Massage- professional relaxing massages, not deep tissue (too painful)
-Hand Massage Unit for tight muscles
-*Change of Diet as a Life Style Change (read Hot Detox by Julie Daniluk
-Therapy (Consider finding a trusted Therapist that understands your wishes to not use anti-depressants or other harmful drugs as part of your treatment plan). Finding someone to talk to about your PTSD or stress levels is really important.
-Exercise- Strenuous exercise is not recommended due to the magnesium deficiency and possible tendon tears and muscle wasting, not to mention lack of energy, however…walk if you can (especially in nature)…Ground as much as possible, best on a beach, or do light yoga, or “chair yoga.” Some exercise will help keep the joints from stiffening up and will actually help you to sleep better.
-Practice good sleeping habits
-Give yourself permission for self-care and acceptance of a new you
-Find ways to lower stress and anxiety, find some coping mechanisms and some hobbies like crochet, reading, watching movies…do something you enjoy, but do not spend all day every day online because that isn’t healthy.
-If you get an infection–a confirmed bacterial infection and not a virus and you need antibiotics, please consider first herbal or homeopathic remedies such as mega doses of garlic, oregano oil or berberine before resorting to synthetic antibiotics. But, if you cannot avoid them, ask in the Floxie groups for a list that are generally well tolerated by most. There are safer antibiotics available, but none that come without side effects. And if you do have to take a synthetic antibiotic, follow each dose, by two hours with a probiotic supplement. Yes you can take it more than once per day, you just need to make sure you wait two hours or you will mess up the effectiveness of your antibiotic.
-Quiet Reflection or Prayer (FAITH, especially for a Christian like myself is so important) as I believe that God saved me from doing something desperate…like suicide.
-Time spent with PETS- Cats, Dogs or other.
-Having a supportive significant other, Husband or Wife…some Friend, who believes your story of harm and is loving and supportive.
-Belonging to an Online Support Community such as Floxiehope or Fluoroquinolone Toxicity Group. I thank my groups for your love and support through these dark, dark months and years, and it is my prayer that each one of you will find some measure of healing daily. Don’t give up, never give up.
-Love and lots of Hugs.
List of Supplements–
I went a little crazy trying to heal from this drug and took a very drastic approach to supplementing. I suggest that newly Floxed individuals start slowly. Wait one or two weeks on Digestive Bitters…before introducing supplements one at a time. You will find that your body will be better able to absorb the nutrients that you are introducing. Also, by introducing supplements one at a time, it will give you a better idea of how well your body is adapting to that supplement. If you have a reaction, you will know which supplement caused the problem.
*I am not a proponent of multi-vitamins because these combinations throw vitamins and minerals together with no thought about whether they support or compete with each other. And often these combinations also have vitamins and minerals in quantities that our bodies may not need. For example…we may be getting enough calcium from our diets, and yet we take a supplement that gives us even more than we need and may not be safe. Also, the ratios of calcium to magnesium use the outdated 2:1 ratio, and all the new research suggests a 1:2 ratio is best, one calcium, two magnesium. If you eat a lot of dairy, you are getting more than enough calcium in your diet and may only need magnesium. Some vitamins are dependent on each other and others improve how each is absorbed. Also all minerals need to be taken separetly and by two hours. You have much more control supplementing individually.
-Digestive Bitters (St. Francis Canadian Bitters) a Tincture 30 drops on a spoon 20-30 minutes before meals. I also sip Lemon Water and occasionally take a shot of Apple Cider Vinegar.
-Digestive Enzymes- see Pure Bee Pollen
-Ox-Bile Supplements (as needed before a fatty meal)
-Milk Thistle (usually take this in a tea) but I also have a supplement that is Milk Thistle and Dandelion. I take 1 capsule x 1/day. For my liver (bile production) and also kidney health.
-Magnesium (oral) BisGlycinate 200 mg x twice daily (Morning and Before Bed)You can also try the name brand of CanPrev (a Canadian formula) Try Magnesium 140 or 80. *If you have reduced kidney function, supplementing with high amounts of magnesium should be cautioned.
-ReMag Liquid- is probably one of the best magnesium’s for Floxie’s on the market, but its expensive. It has superior absorption as it absorbs right into the cells without causing a laxative effect. Diarrhea caused by magnesium is another reason why it isn’t absorbed properly. If you are a veteran magnesium-taker, you can begin with the maintenance dose: 1/2 tsp twice a day (which is 150mg elemental magnesium) If your lifestyle or diet tends to drain a lot of magnesium, you may want to increase your dosage from 1/2 tsp to 1 tsp, two to three times per day. It is best to put the full day’s dose into a liter of water and sip through the day (use along with ReMyte and sea salt).
-Magnesium-L-threonate (Before Bed) 1 scoop in 8 oz of water. This is unlike other forms of magnesium. It feeds the brain, helps with concentration, memory, focus, makes you smarter and helps you learn. It also reportedly helps with stress and may even help with PTSD.
-Magnesium Chloride (topical Gel) –As needed
-Magnesium Flakes and Epsom Salts- Epsom Baths –as needed, at least 45 minutes
-Taurine 300mg. May help with magnesium absorption.
-Sodium- Sea Salt or Pink Himalayan
-Bio-Salts (aka Cell Salts) supports minerals, helps the body heal 3 to 6 tablets under the tongue x 3 times/day
-Potassium (Food Grade Only) From my diet and also see Deep Ocean Minerals.
-Zinc Picolinate (most absorbable form) women 7mg/ men 10 mg of this important trace mineral
-Boron (see Deep Ocean Minerals)…helps with magnesium absorption.
-NAC (N-Acetyl-L-Cysteine) 500mg x twice or 3 times/day. This free form amino acid is suggested by Dr. Jay S. Cohen to prevent or reverse FTS, especially when paired with vitamin E.
-Vitamin E (d-alpha form) as suggested by Dr. Jay S. Cohen
-Vitamin D (Genestra D-Mulsion 1000) I take 1000 IU x 5 = 5000IU daily (I live in northern Canada) I will temporarily boost this amount when I catch a cold/flu to 10,000 IU and drop back down to 5,000 when well. *I always pair this with K2 (sourced from MK7).
-Vitamin A (you may or may not need this vitamin as you may be getting enough in your diet).
-Vitamin B12 (Bioavailable), and perhaps B1 and perhaps B5. B Vitamins give you a boost of energy, so never take B vitamins in the evening or at bedtime if you hope to sleep.
-Folate 5-MTH (NOT synthetic folic acid) *Note- Folate and B12 cured my anemia.
-Collagen (powder) and also Organic Bone Broth. I make Collagen gummies and also Fat Bombs for my KETO diet.
-Vitamin C. I try to choose Pure Fruit sources by eating fruits high in the vitamin and also choosing a supplement like Camu Camu or Alma Berry Powder, or Acerola Cherries. Again…I temporarily boost my intake when I have a cold/flu.
-Antioxidants- I choose antioxidant rich foods like blueberries, red wine for the Resvestrol, Xanthohumol supplements, Elderberries, Tart Cherries (especially Tart Cherry Juice)
-Deep Ocean Minerals by Whole Earth and Sea. This is a pure food, a liquid that tastes awful. But it is a source of over 70 highly concentrated minerals and trace minerals in the correct ratios. For example the calcium to magnesium is in a 1:2 ratio. I take 1/2 tsp in water, or I will add it to my bone broth. The minerals are- magnesium, calcium, potassium (food grade), sodium, and boron 125 mcg in 1/2 tsp. and also iodine (from kelp) 75 mcg in 1/2 tsp.
-CoQ10 – Ubiquinol (Active CoQ10) 200mg x 1 softgel per day
-Ginseng. I take a product called “Energy” by nu-life which has 9 sources of ginseng. This increases stamina and focus quickly; strenthens immunity long term; and to combat stress and fatigue daily. Over 1000mg ginseng x 1 morning and another in the afternoon (only when needed)
-Ginger Root- Soothes digestion/Relieves nausea 1200mg x twice/day
-Chanca Piedra by Platinum Naturals provides a therapeutic dose. this is known as the “stone crusher” and I take it for reoccurring kidney stones and for kidney health. 500mg x 1/day.
-Ginkgo Biloba supports concentration, memory and peripheral circulation, enhancing blood flow to the arms, legs and brain. 120mg x 1/day.
-Eye Health Essentials/ with Lutein and Zeaxanthin. It contains all the known supplements to support eye health. But I also take Bilberry Extract 120mg x 1/day that supports healthy eye function, helps slow the progression of disorders of the eye, such as diabetic and hypertensive retinopathy, and macular degeneration. I hope to try TUDCA soon.
-Pure Bee Pollen 1 tsp, building to 3 tsp in water and swallow. I use this as a natural enzyme.
-Oregano Oil that is at least 80% Carvacrol. 3-4 drops suspended in my Omega 3 Fish oil per day. Sometimes I add the drops to Manuka Honey if I am fighting off an infection and then I will take the oregano oil 3x per day on an empty stomach.
-Omega 3 Fatty Oils- Fish Oil that I take 1 or 2 tsp/day for my arthritic joints and to lower inflammation.
-Boswellia (Indian form of Frankenscence) An excellent anti-inflammatory, great for painful joints and inflammation that causes pain. I take this with magnesium instead of NSAID’s. It doesn’t work as quickly, but if you take a maintenance dose, and stay on top of the inflammation you can word off much of the pain. 307.69 mg x 2 (or 3) pills x twice per day. I also infuse Frankenscence in our room where I can inhale it.
-Garlic (as needed for infections and colds). *I chew raw garlic with Manuka honey, or take a supplement that is equivalent to 2000 mg of fresh garlic bulbs.
-5-HTP (5-hydroxy-L-tryptophan) that I alternate evenings with Melatonin, and always pair both with Magnesium before bed. A dose of only 3 mg of 5-HTP is usually enough and will only cause a sedative effect when melatonin levels are low in the body. Bioavailable 5-HTP is converted in the brain to serotonin-an important initiator of sleep. Melatonin is a sleep-aid that improves sleep, increases total sleep time, and is used for mild sleep problems. *Tart Cherries are said to be very effective for sleep.
-Lumina (I used to take this, but its been discontinued) It was made by Metagenics. It was designed to support dopamine activity, to support a healthy stress response, to support healthy neurotransmitter metabolism and to provide anti-oxidant protection.
-XanthoMax (Xanthohumol) a powerful antioxidant 200x more powerful than Resvestrol.
-Coconut Oil Supplements 1000mg x 4/day = 4000mg. Another powerful antioxidant and a source of medium-chain fatty acids that doesn’t need bile to break it down and is excellent for patients without gallbladders. *I wish my doctor had told me about this!
-Slippery Elm. I take this for my IBS symptoms. Combined with bilberry, cinnamon, and agrimony reduces stomach pain, bloating, and gas symptoms caused by diarrhea. I rarely experience constipation unless I am forced to take NSAID’s.
-Alpha Lipoic Acid (ALA). Use this multiple times per day as this way it is more effective and consistent. Usual dose of ALA (Also known as L-ALA) is: 400mg x 4/per day, but for FTS, a dose of 200mg every 2 hours may work better (so says Dr. Jay S. Cohen).
-Benfontamine- another effective supplement for FTS induced neuropathies, essentially it is an advanced derivative of thiamine known as benfontamine. 600mg or even 1200mg/day total.
or use 100mg or 200mg at a time, multiple times per day.
-Acetyl-L-carnitine a dose of 150mg or 500mg x 3/day
It is also effective for neuropathies, but it has a common side effect of gastritis, which can be reduced by taking it with food or ginger.
-Elderberry Syrup for Colds
-Mullein Tincture for chest colds, breaks up mucus. Use in combination with NAC.
-I have other things that I do when I get a cold.
** 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 Floxie Hope, 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, affect 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.