My name is Janet Murray, I am 57 years old. I do not even know how to put my health story into words so that the human mind can understand the pain I have lived with. I lived in Canada and had been given many courses of Cipro for various illnesses over the last 30 years. Sometime ago, I began developing a lot of strange problems that no one could diagnose. I had GI difficulties, body pain, migraines every week, severe interstitial cystitis – so severe they wanted to remove my bladder. Thankfully, they did not. I was given many diagnoses too, including Chronic Fatigue Syndrome (CFS) and fibromyalgia. My cognitive abilities became so impaired. I loose words and my memory is shot. I had to leave my job with the Federal Government and work at home, at my own hours. I have been extremely fatigued for the last 25 years, but I never connected the dots between my health issues and the fluoroquinolone antibiotics like Cipro, Levaquin, Avelox and others until I blew out my forearm tendon, a classic post fluoroquinolone adverse reaction. It was only then that I began to learn more about the chronic symptoms that fluoroquinolone antibiotics evoke. I had them all and more. These symptoms didn’t appear all at once, and so it was difficult to identify at first, but over time, my illnesses became readily apparent and progressive to the point that it was no longer a question of if I was poisoned by a fluoroquinolone, but how badly.
Let me back up a little though and give you some more details. For years, I was fatigued and suffering from post fluoroquinolone reactions, but I didn’t know it. During that time, I had a long distance relationship with the love of my life in NJ. He waited and visited me back and forth for 10 years and I visited when I was well enough. When I was finally was well enough to immigrate to the US, I he asked me to marry him and so I stayed and had two wonderful years. We are jewelry designers and did the large shows. I functioned, at very low level and had to rest always, but I was living my dream. Even functioning at such a low level, I was happy after many years of hell.
One year, I kept getting bronchial issues and went to a walk in clinic. I was given Levaquin with Prednisone with NSAIDS and was on small dose of a benzodiazepine. Fluoroquinolones should never be used with steroids and NSAIDS, something I did not know at the time and apparently neither did the doctors. I took this combination again and again and again across that year.
My reaction to these drugs was delayed and so it did not occur to me to link the Levaquin or my past Cipro use to my strange symptoms. I have since learned that delayed adverse reactions are common post fluoroquinolones. After my first script that year I was more tired, could not walk far and something was not right. I didn’t know what though. During the second year I woke up with acid pain in the shoulder and could not lift it. I was told I had frozen shoulder. It was really a tendon rupture, common post fluoroquinolone.
The pain in my forearm and shoulder was horrific. It took 8 months before I could move my arm again. Then I woke up one morning and the same thing was happening on my buttock tendons. I had the same horrific, acid-like pain. Those tendons ruptured. I crawled for 4 months and tried to stand when I could. I could no longer walk, the pain was unbearable.
One morning I woke up and my entire body felt like it was beaten with a baseball bat. I had a shot-like feeling in the base of my neck. I sat up, vomited and shook. The next day my entire body started to shake. I felt like I had been electrocuted. I had sharp pains of electricity though my entire body. My skin felt ripped off of the bones with electric jabs and jolts. I had large jolts of electricity cursing through my body. I sat for 5 months frozen, feeling like I was living in a body of large, angry hornets, stinging me all over 24 hours a day, 7 days a week. The electrocutions were never ending.
My stomach almost shut down almost. Every joint in my body popped and cracked when I moved. My legs would not hold me. I lost the vision in my right eye due to a macular tear. I lost four teeth due severe periodontal damage. Other symptoms include:
- Up to 40 mouth sores at a time. The doctors say they look like burns or lesions. I wonder if it’s not a form of Steven-Johnson Syndrome.
- Swaying, if walking, dizzy, feeling of being “stoned” in the head.
- Sensory chills so severe with stinging that it takes 4 hot water bottles and wearing then down top as well.
- Arms and hands go dead and numb
- Constant feelings of being electrocuted
- Severe bowel constipation
- Intolerance to most foods
- Body hair stopped growing
- My skin has become very thin and transparent with enlarged veins.
- Pin prick sores on my legs and what looks like burns all over my body.
On the right, the burn-like lesions all over my body. On the left, the pin-prick sores on my legs. - I experience severe changes in body temperature.
- Feelings of terror and anxiety, not related to any surrounding, that come out of the blue
- Severe depression
- Hyperthyroid
And the strange symptoms go on and on. No one seemed to understand. I was almost dead. I dropped 40 pounds in three months. My heart pounds non-stop. Terrors and jolts surge through me. I was hysterical and crying.
The doctors keep saying I have fibromyalgia. FIBRO, I am being electrocuted..!! It couldn’t have fibro. I sat and thought this is NO normal illness but nothing showed up much on my tests. I have seen 50 doctors and no one can find anything. I feel like I have been poisoned. I soon learned, I was not alone. It was the Levaquin, a fluoroquinolone antibiotic that I have since learned, causes severe peripheral neurophathies, mitochondrial damage, and all of the seemingly unrelated symptoms that I have experienced over the last couple of years.
Right now, I am in so much pain, I cry daily. I wake up with night terrors, heart pounding. My feet feel frozen, as if they are dying due to extreme hypothermia – the kind mountain climbers face when their fingers and toes turn black. That’s what my feet feel like. My tongue burns like a hornet’s nest, day in, day out. It has been a year now, living with all over the body hornet stings and large tree like branch zapping about 40 at a time. I had the EMG and nerve biopsy that shows axonal swelling. I had an MRI showing two white matter lesions in the frontal lobe, the doctors say are consistent with MS or Lyme disease.
I should mention, I also tested positive for the MTHFR mutation that makes methylating vitamin B’s difficult. Even with the axonal damage, no one knows what to do. They tried to give me painkillers but I cannot tolerate them and vomit them back up. I have been on Paxil for years, more because I cannot seem to withdraw from it than anything else. Gabapentin, even at a high dose, does nothing and so I suffer. I cannot take this much longer. I cannot live with the nerve pain. Please help.
A few other clues that might be helpful for understanding this mess. When I tried acupuncture to relieve the nerve pain, it made it worse. The hornet’s nest sting lit up. Ditto for niacin. When I was given niacin, my body reacted very strongly. If there are doctors, researchers, patients, or anyone out there that can help reduce the pain I experience, who can help heal, reverse, or even just slow what seems to be a progression of increasing pain, please leave your comments here. Thank you.
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I’m so sorry Janet you are still suffering after all these years. I wish I could give advice on how I partially recovered, but I fear this is a very individual experience and there isn’t a one size fits all. I can only say the few things I still remember that helped me.
1. Stop all supplements
I of course when first floxed took countless supplements in desperation but soon realized that several of them were worsening my condition, causing an onslaught of other symptoms, many of which were neurological. Once I stopped completely all supplements (At least mostly) many symptoms improved over time.
2. Logging food and symptoms.
I made a chart daily of foods I ate and a column for each symptoms in a spreadsheet and rated symptoms that day from 1-10 (I also included a ton of other stuff from that day that might also affect the symptoms variation, such as, supplements or meds taken, the weather and anything else I did daily or so that might impact my symptoms. Which leads me to my second one.
3. Stopping whole grain in my diet
Doing the above chart I had identified that when I ate whole grain cherios for breakfast symptoms got worst over time, then I noticed a harsh down spike of symptoms one month suddenly and a sudden rise again the next month, that month I realized I had eaten yogurt and fruit for breakfast instead of whole grain cherios (I now only drink gatorade protein milk for breakfast and still ok). It has become a personal belief to me that whole grain especially are detrimental to health for several reasons I cannot prove, but I suspect affects the gut and causes certain problems that are to vague for me to even go into.
4. Exercise
For the first 2 years of my flox I could not walk at all. from 2011 early to late 2012. Spring 2013 I after doing the above 3 points, started to walk again with a cane, but still forced myself to. When I moved to my grandfathers house, I started going outside, setting the cane aside and doing 5 minutes of leaf raking, then next day 10 minutes and so on, then started shooting balls in a hockey net, then doing 20 minutes of leaf raking. By winter I could walk normally and even start shoveling snow for my grandpa. Living here kept me active and once spring came, I was even able to run. I kept on going for walks for many months and mid to late summer even started working out. I am not always able to do this (mostly in summer with good weather) but keeping the body active definitely helped.
The last point I do not want to recommend it but unfortunately, I think drinking alcohol, several times a week, might have helped me, reducing spasticity and stiffness allowing me to exercise more, it also seemed to dull out a few neurological symptoms I had, but again, I do not recommend this, I only wanted to be honest and thorough about my experience.
I hope this information may be of some help.
Hang in there.
~ Guy Belair (aka Locke Cole)
Sounds exactly like Chronic Lyme Disease!
Since then I have torn meniscus laying in bed, did not heal well, no cartilage left. my spine is severely damaged.. bone density of a 90 year old and also I had mast cell illness since young but was tolerable. the FQ’s damage the mast cells and now I cannot have a bowel movement without severe pain after,, daily nausea, just on and on nightmare.. I am fighting so hard but declining
How are you these days?
Janet, I am 2.5 years into a severe floxing with symptoms almost identical to yours. 24/7 electrocution/tinnitus and full-body neuropathies and collagen destruction. Feels like non-stop acid burning (also in eyes) and electrocution. Not sure I can stand it much longer. But you MUST GET OF PAXIL!!!! Do you know the chemical name of Paxil is:
(3S,4R)-3-[(2H-1,3-benzodioxol-5-yloxy)methyl]-4-(4-fluorophenyl)piperidine? Yes, fluoro…..
Stop your meds!!!!
Michelle, I do have antibodies attacking my thyroid but because all my numbers are still on scale they wont treat me. I do have nodes and now cysts on my thyroid. I have been to over 90 doctors and homepathics. so far no help and I am declining even further as the neuropathy is all over me. I live in the bathtub to survive the pain. How much longer is almost 3 years I can hold on I don’t know. I am out of money period.
I’m sitting here experiencing some of the same things you’ve mentioned.. I was looking it up online and came across your post.. Have you tried a drug called nabilone? My neurologist put me on it and it helped quite a bit. It doesn’t take it away completely but it certainly makes it manageable. I’ve also been put on medicinal marijuanna (I have systemic lupus & severe inflammatory disease),, the oil high in CBD has worked wonders for me. You should find out about having a biopsy done on the area of the body that is the worst (I’m having one this month of the nerves/vessels in my feet).. They’ll be able to see exactly what’s going on. I hope this helps even just a little bit..
This is obviously mitochondrial damage. Your brain is suffering from what is sometimes known as pseudo hypoxia, meaning that oxygen is not being used efficiently in brain cells. When this happens, everything in the brain is exaggerated including the sense of pain. I know of only one possible treatment for you and that is thiamine tetrahydrofurfuryl disulfide. You can research this yourself by looking up my name on Google where you can find a paper on this subject. This is not just somebody’s imagination. It has the stamp of science. You can also look at other posts on “Hormones Matter” because there’s a lot of material on this subject.
Sorry to hear you’re going through this. I experienced something very similar. However, I was already having serious chronic health problems prior to taking Cipro, which I think was the nail in the coffin, so to speak. So it’s difficult to determine exactly which symptoms were caused by Cipro toxicity.
I was subsequently dx’d w/mito and metabolic myopathy, dopa-responsive dystonia and Trigeminal Neuralgia and had bodywide myofascitis along w/chronic contractures in both thighs and shoulders. I wasn’t able to bend w/my back or at the waist for about 3.5 years and lost use of both hands. The good news is that I was able to reverse all of the above and put other disorders into remission with a genetic-based nutrition program.
I would highly recommend addressing methylation via Amy Yasko’s protocol. In the meantime, consider benfotiamine and borage oil for the neuropathy as well hydroxycobalamin, Krebs magnesium potassium chelates and Phosphatidylserine complex.
Wishing you restored health and happiness! Hand in there!
Your problems are extremely complex! It seems you are being poisoned! Are you still taking presciption drugs? The comments above are good, especially probiotics. Man made drugs destroy gut flora and the bodies ability to deliver nutrients. Maybe look into Liposomal Vitamin C and liposomal Circummin-liquids that provide intravenous type power using a carrier agent to get vitamins through cell walls. For the poison… http://healingtools.tripod.com/char3.html Sites of importance… http://www.curezone.com which is the largest alternative med site out there, but considering your problem, I would suggest something even weirder. Remote healing…
http://www.intuitivehealthsolutions.com (some personal experience with this) and depending where you live in Canada, if you live in central Ontario, maybe go see Dr. Douglas Cottrell in Hamilton some Sunday. Are you familiar with Edgar Cayce? Douglas is like him but a personal reading is expensive, like 500 bucks. He is one of the worlds great psychics and has been known to heal some people when meeting him in person. That would be free if location is not an issue. http://www.douglasjamescottrell.com. Good luck
if you have the MFTHR many supps and gluth etc and not be processed right away.. I am working on that meanwhile my nerves seem to be progessing as I cannot use my left foot anymore..
I’d recommend looking into colon health
Get on probiotics asap and L-glutamine for immunue system and to fix and leaky gut
I’d also begin consuming 7 Tbsp of coconut oil per day
Research each of those
Each one perfectly natural and each one having no negative effects (only positive)
One cannot take too many probiotics nor too much glutamine nor too much coconut oil
I am in New Jersey
The clue is in something that you mentioned yourself, mitochondria coupled to the MTHFR mutation. That is much like saying that both the engine and the transmission of a car are damaged at the same time. Mitochondria represent the engine and MTHFR the transmission. The tissue that is most sensitive to a collapse of this nature is the limbic system of the brain because of its huge energy consumption. The symptoms are arising from this part of the brain due to loss of oxidative efficiency. The only way that you can get relief in the end is by repairing the damage in mitochondria. This can only be done by the skillful use of non-caloric nutrients, vitamins and minerals. The trouble is that you cannot reach the concentration needed by taking them by mouth. You have to have them intravenously. I recommend finding a Dr who is doing this. I suggest you call the American College for Advancement in Medicine (ACAM) acam@acam.org and request the name of a physician who does this nearest two your locality.
Hello Janet
Two years ago I had health problems which doctors did not understand and I was diagnosed with fibromyalgia. This is a made up name for “we don’t know what is wrong with you” I didn’t have symptoms as severe as you but I had the initial ones – weak and painful muscles, I was finding it difficult at some stage to climb up the stairs; my fingers were too slow to play the piano; diarrhoea followed by constipation; vomiting occasionally and constantly feeling sick; headache and pinching in my neck and shoulder muscles; I have not taken fluoroquinolones but other strong antibiotics which would have eliminated all good bacteria in my stomach.
I believe all this was mainly the result of something viral I had when my immune system was quite low from sleepless nights after giving birth to my third child but the additional poisoning of the body has probably made it worse; What I did was to clean my body from toxins – I fasted for 10 days, ate 700gr of fruit, 3-4 herbal teas with a teaspoon of honey and as much water as I liked per day, did not take any medicines, nothing else is allowed; after the 10 days for another 10 days I started carefully and slowly introducing one by one first some boiled vegetables (no seasoning), then fresh vegetables, then some plain yogurt, I could send you the exact program if you wish; If you find it difficult to live on 700gr of fruit try the colon cleanse of Blessed herbs for the first 5 days instead, the herbs soaked in apple juice expand in your stomach and you don’t feel hunger; after the 5th day your body will get used to the small amounts of food and you will not feel that hungry; this is recommended for spring and summer as you will feel cold; you will also need to rest a lot and stay in the sun
I wish you luck and remember all disease starts from the tummy, so first clean it! You will probably feel worse the first few days but don’t give up, this is a healing crisis
PS: I am fine now but I do this diet once a year, I go to body balance or yoga, after that sauna and take a cold shower 3 times a weak and spend 2 months a year in the sun
Boryana
Suggestion: explore vitamincfoundation.org & doctoryourself.com. I have found mega-doses of vit.C (as sodium ascorbate) very effective for major autoimmune disorders, including Multiple Sclerosis. My dosage is in the range of 20-30grams/day in divided doses. Vit. C has been my mainstay for more than 30 years now. Ask at the vit. C foundation forum for help:members are generous & will help you if they can. Consider also reading Ann Wigmore’s little books: IMO,her writings still have much to offer if her wisdom is applied.
hi janet, were are you located?
Janet,I am glad we became friends. I understand exactly what you are going through as I am experiencing much the same. These fluoroquinolones are POISON…packaged with skull and crossbones! All FQs should be removed from the market. POISONS kill…is true! HUGS and PRAYERS!
Hello! I empathize greatly to your struggles. So many of your symptoms are hypothyroid in nature. Did you know that you can have both Hashi and Graves’ at the same time? Also that Hashimoto’s can make a patient both hyper and hypo depending on the timing of the autoimmune attack on the thyroid?
How does one determine if they have Hashi and /or Graves’?:
TSH test.
It will generally be high to indicate hypothyroidism and low to indicate hyperthyroidism. However, this test can be wrong/misleading so, you HAVE to perform the next tests.
Free T3 and Free T4 tests.
Another blood test used to diagnose Graves’ disease measures T3 and T4 levels. In making a diagnosis of hyperthyroidism, a physician looks for normal to elevated levels of T4, and elevated levels of T3. (The opposite for hypothyroidism).
Health care providers may order other tests to finalize the Graves’ diagnosis. The following two tests use small, safe doses of radioactive iodine because the thyroid uses iodine to make thyroid hormone.
Radioactive iodine uptake test. This test measures the amount of iodine the thyroid collects from the bloodstream. High levels of iodine uptake can indicate Graves’ disease.
Thyroid scan. This scan shows how and where iodine is distributed in the thyroid. With Graves’ disease the entire thyroid is involved, so the iodine shows up throughout the gland. Other causes of hyperthyroidism such as nodules—small lumps in the gland—show a different pattern of iodine distribution.
TSI test. Health care providers may also recommend the TSI test, although this test usually isn’t necessary to diagnose Graves’ disease. This test, also called a TSH antibody test, measures the level of TSI in the blood. Most people with Graves’ disease have this antibody, but people whose hyperthyroidism is caused by other conditions do not.
To confirm Hashimoto’s:
TPOab and TGab any presence of these antibodies indicates Hashimoto’s
Thank you for sharing your story, Janet! I am so, so, so sorry for all that you have been through!
Your story illustrates what happens to people when adverse drug reactions aren’t identified and recognized – people are poisoned repeatedly. Then, to add insult to injury (literally), patients are told that they are making things up, that their pain is just in their head, or that nothing is wrong with them when there is clearly something wrong with them. Which one is it docs – “all drugs have side-effects” or “this can’t be from the drugs”? Because having both doesn’t work.
Janet, I hope that you find some relief. I hope that you are able to return to the life that you love with the love of your life! All of the tips that I have for you are on http://www.floxiehope.com. I hope that someone can provide drastic help, because it’s certainly what you need.
xoxoxo
Lisa