IMPORTANT NOTE: Ruth is still healing, and she is living a full life. Her full, and stressful, life makes it so that she cannot answer any questions, give personal support, or respond to comments from fellow floxies. Please do not reach out to her while this note is up. Thank you for your understanding. Ruth hopes that her story helps those who are in need, and there are vast amounts of helpful information in her story and in the comments below the story.
*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments.
When my doctor prescribed Cipro for a stubborn sinus infection in February of 2014, I thought I had never heard of it, and asked her if that was an antibiotic. The truth was, I had heard of it. I had taken it before and hated the experience so much that I had refused to take it again as a doctor laughed at me, treating me like a stubborn child refusing to take her medicine. Perhaps I had blocked out the experience. Perhaps I doubted my sanity at the time. I remember feeling that I was being tormented by a demon, sleepless night after sleepless night as I lay awake reading the name of the pills on the bottle: Ciprofloxacin. Gradually, the idea dawned on me that the demon was actually in the bottle of pills. I got up and threw them away as a hooded figure standing in the center of my parent’s kitchen watched me.
Until early February of 2014, while on Cipro, I kept noticing this odd, thin yellowish liquid coming out of my nose. It wasn’t infection, but it wasn’t a normal secretion either. Yet, it seemed familiar. This odd drainage had accompanied my experience with Cipro back in the 1980’s. After the nightmare started again I remembered, but it was too late. From February 6th through the 9th I took seven 500 mg pills in all. I had read the long list of side effects, but I was not told that these side effects (other than peripheral neuropathy) could become permanent. I was not told that these side effects were evidence of actual damage being done to my body and central nervous system. I was warned about tendonitis, but not told that Cipro actually causes tendonsosis (an abnormal formation of a tendon) and that the damage done by Cipro to connective tissue and cartilage can be irreparable.
I called my doctor with concerns about taking Cipro. She said that not one of her patients had ever had a problem with it in twenty years of her prescribing it. “But I have biceps tendonitis in my right shoulder and I have laterally tracking patellae,” I told her. “The warnings say it is not to be given to people with joint or tendon problems.” Still she persisted, now acting like I was being a big baby. The warning label also said it was not to be given to anyone with a history of mental illness. I did not remind her, but she knew of my bout with depression. She had helped me make the connection between my intractable insomnia years ago and depression as the real cause. She prescribed a drug known to cause depression and insomnia to a person who had experienced a bout of depression that manifested itself mainly as insomnia. I knew she was wrong to do that, but my sinus infection was getting better with just one pill. My “snot plug” was finally going away, and it was such a relief that I chose to believe that I would be ok. I had not yet experienced any side effects.
I began having side effects after my second pill, which included muscle weakness, joint instability, elevated blood pressure, insomnia, tinnitus, brain fog, auditory and visual hallucinations. Despite the side effects, I didn’t want to stop taking an antibiotic too soon. I thought that I would adjust to the medication and the side effects would become less troubling. So I continued to take it even when I couldn’t play the organ on Sunday morning. It felt like my feet were too far from my brain to play the pedals. I managed to play for the service, but it was terribly difficult.
Right then I should have known something was drastically wrong. I’ve been playing the organ for over twenty years, so the ability to play those pedals is stored firmly in my supplementary motor cortex: the same place your brain stores how to walk, ride a bicycle and feed yourself. Forgetting how to play pedals was like forgetting how to walk. But I was already in this weird, detached, emotionless place where nothing seemed real.
I called my doctor after the tinnitus, which was loud and a different pitch than I’d ever had before. As a musician, I feared for my hearing. She said to stop taking the medication. She seemed at a loss as to what else to prescribe for my sinus infection. I read online what to take for tinnitus and found magnesium as a suggestion. I immediately took a magnesium pill. Then I read more about Cipro and got the scare of my life. I read about Cipro’s ability to chelate magnesium—basically float it right out of your cells. That was the explanation of the yellow liquid—it was my precious magnesium being taken right out of my brain cells and I was blowing it out my nose and throwing it away in the tissue.
A couple days after stopping the Cipro I experienced terrifying panic attacks every time I fell asleep. It was like being shoved down into hell: a place of loneliness and terror. I had never felt fear and hopelessness like that. It was like being thrust into a horrible place from which there was no escape. It had been a long time since I prayed. That night I prayed a lot, clutching a crucifix in my hand, crying out to Jesus to get me out of there. I wrote about my panic attacks on Facebook and friends immediately responded that I just needed to relax. But I WAS relaxed. They only happened each time I actually fell asleep. I felt ok awake, it was when I slept that all hell broke loose.
In the morning I ate an orange and felt on top of the world. By this time I had read that magnesium healed Cipro damage, but I had just glanced over the information about the role of antioxidants. You hear so much about antioxidants today, I just felt like, “Blah, blah, blah, Vitamin C, whatever…” But after I had lost so much functional magnesium, my body was experiencing a high level of oxidative stress, and my antioxidants were probably entirely depleted. The terrifying panic attacks were my body’s way of saying, “Something is drastically wrong here. Get up and do something about it or we are in big trouble!” My craving for an orange, and the feeling of euphoria after eating it were also messages of what to do. I then started looking into the role of antioxidants to heal Cipro damage and found out about MitoQ and Idebenone. Both were proven to prevent tendon damage from Cipro. I only hoped I’d found out in time.
My Achilles tendons hurt from being stretched as my constantly tight calf muscles pulled on them. One morning they actually felt brittle, almost crunchy—not normal at all. I could barely get around. I’d read the horror stories. I knew it might only get worse. My body could literally start to fall apart. It had happened to other people. But tendon pain and tight muscles were only the beginning. It became almost impossible to control my blood pressure. I had been mildly hypertensive for years, but now I was having spikes that were actually uncomfortable and really scared me. Concentrating on things made it worse—entering grades into the computer for my music teaching job, playing the organ—these activities caused my blood pressure to go up so high that my head pounded, my ears rang with a pulsing tinnitus and I felt like I was going to black out. Relaxing, closing my eyes and blocking out all stimulation would bring it back down. After I relaxed and felt better I checked my BP– once it was as high as 184/132.
I contacted a local anti-aging doctor, Dr. Whitcomb, and he gave me IV magnesium, Vitamin C and glutathione. Those treatments made me feel worse initially, but the next day I would feel a lot more like myself. The first one cleared my brain fog, but I had a BP spike that evening. It was like doing good things for my body caused an out of control stress response.
I also had been having trouble with sleep that was not improved until I got some magnesium oil and started taking Epsom salt baths. I would lie and doze in the magnesium bath and see flashes of light and weird images behind my closed eyes. My brain would do this vibrating, pulsing thing, which felt very odd, yet familiar. Perhaps I had experienced it in the 1980’s after taking Cipro. I think it was my brain taking up magnesium again, because after the weird brain pulsing feeling my dreams stopped going by in fast motion. Magnesium helps you relax, and without it, life is torture. I remember looking at my bed and feeling that it was useless to me now, because I could neither relax nor sleep.
Dr. Whitcomb taught me meditation techniques and I spent much of the first two months focusing on learning to relax, to reduce stimulation, to reduce stress. I started playing my Beethoven records again. When I was a kid I loved lying on my bed listening to music and just totally blocking out the world, getting inside the music, to a place where nothing existed but my body and the music. Dr. Whitcomb said that was a form of meditation. He said that during meditation the neurons in our brains shrink and our lymph vessels expand, just as happens while we sleep. Meditation is actually good for our brains!
Sometimes I would find that I just could not relax deeply. Something seemed to be stopping me, a feeling of tightness in my chest. I had days during which my heart would pound all day long at the slightest stimulation. I had nights during which relaxing at all (much less falling asleep) would cause all my muscles to tighten, my skin to burn, my ears to ring, my heart to pound and I would get a feeling of fear. I couldn’t understand why, because this was after my magnesium levels had come up.
I had gone from lacking muscle tone to the point that I looked like an 85 year old woman to being able to perform brief mild to moderate exercise sessions. I’d had one relapse during which my magnesium levels dropped and all of those initial symptoms came back—the dreams racing in fast motion, the loosened, brittle and sensitive teeth, the sagging skin, the reduced muscle tone and unstable joints, the inappropriate sensations of cold in my left arm, the loud tinnitus. But once I realized I needed to keep supplementing magnesium, I was able to heal myself again of all of it. Yet, here I was at 2 1/2 months out and suddenly having intense burning everywhere, even my scalp. What was going on?
My cousin, who works at a pharmacy, told me that my symptoms matched Benzo withdrawal symptoms. That was when I found out that Cipro downgrades your GABA receptors in a similar way to Benzodiazepines. I was actually going through protracted Benzo withdrawal, without ever having taken a Benzo. This damage to my CNS explained the weird nerve sensations in my face, the way my symptoms cycled allowing relaxation one day but totally preventing it the next, the out of control stress responses to normal stimulation and even my inability to tolerate supplemental magnesium at times. GABA helps you relax. Without enough GABA receptors, life is torture.
One good thing that came of all this is that I googled the symptom of nerve pain and numbness in the face and found a post by a woman who had found relief from all those symptoms by going on Verapamil. Verapamil is used for treating both hypertension and migraine headaches. My blood pressure is now well controlled and I haven’t had a migraine headache since starting the Verapamil. I can eat dark chocolate or sharp cheese without paying for it with a headache the next day! Yeah!
I am just shy of five months since being floxed by Cipro. I am not perfectly well. However, there has been dramatic improvement, so I chose not to wait for total healing to write my story. Total healing may not come. But I have my life back. I would say that my remaining symptoms are annoying, but not debilitating. I was probably quite magnesium deficient before taking the Cipro, so I have noticed some improvements since being floxed, like the fact that I’m losing fewer hairs. My hair is growing as thick and fast as it did in my twenties. Too bad I’m still producing so many gray ones!
For a long time after Cipro I couldn’t feel normal emotions, except for fear. I felt detached from my life. I hadn’t even cried, and if I tried to it felt like someone was squeezing my brain. I didn’t really laugh. I would perceive that something was funny, but that didn’t seem to mean anything to me. I was like an outsider watching my own life from a distance. I now feel completely like myself again, able to cry and find release in it, able to feel joy, to appreciate beauty and to laugh.
I have made great gains physically as well. I walk around my yard for exercise. It’s about 80 steps around one time. I started out at ten times around, with difficulty. The first time I made it to 40 times around I could barely do the last three. I needed to stop and spray magnesium oil on my legs to keep the muscles from cramping while I walked. I now can walk 100 times around without too much difficulty, without any topical magnesium. I stop because of boredom, not because I can’t do any more. My ankles still get tight and sore, but again, it’s more annoying than debilitating. I have a home ultrasound machine and that helps. Massage has also always helped with the Cipro tightness.
At one point I was starting to develop Bell’s Palsy on the right side of my face, affecting the muscles that control that side of my mouth. I read that Bell’s Palsy can be caused by stress and can affect just part of the face with weakness, not total paralysis. The website suggested for these cases to do exercises of the facial muscles involved. Gradually I’ve been able to raise the corner of the right side of my mouth more easily, which I could barely do at first.
I have lost some weight and toned up a bit since being floxed and that feels good. As I was walking around my yard one day I realized that my butt just seemed smaller. I reached back there, and sure enough it did feel smaller! At the same time I thought that while walking would be a good time to do my facial exercises. So this is how I came to be walking round and round my back yard making funny faces while feeling up my own butt. Luckily, we have a fenced yard that is not visible from the road.
At about three months out I climbed up and back down the east bluff at Devil’s Lake State Park in Baraboo, Wisconsin. There are 600 stairs built into the bluff on the trail we took down. I was more stiff and sore from that than I normally would have been, but I still did my walking and went to work the next week without too much trouble. I also have paddled a canoe for about two hours, and though I had more soreness in areas originally affected by the Cipro, that stiffness cleared in about two days and did not interfere with my daily activities.
I used to work a lot in physical therapy, PRN (as needed) as a physical therapist assistant. I’d switched back to teaching before Cipro, because of a lack of work available to me as a PTA. I thought after Cipro that I could never work in physical therapy again. How could I lift and transfer patients with damaged tendons? I had some damage to my left Achilles’ tendon and my ankles would swell if I walked very much. But I have worked a couple of days as a PTA without any problems. I am not quite as strong as I was before Cipro, but I am aware of this and ask for help with a patient when I need it. The walking and pushing people around in wheel chairs does not bother my ankles or my achilles’ too much. I recently was able to work a seven hour day at a really nice long term care facility in Stoughton (an hour and a half commute each way) and I tolerated the work day and long drive quite well.
My husband and I also work as pyrotechnicians for a fireworks company. I thought I could never be able to do the heavy grunt work involved with that job again, or to have the stamina to work into the wee hours of the morning breaking down a show. I certainly didn’t expect to able to hand fire anything with a damaged central nervous system. We don’t do a lot of hand fire shows anymore, but there are still a few. I didn’t even expect to be able to work an electronically fired show, especially the ones controlled by a computer, because wiring shells into the right cues in the firing modules takes concentration and attention to detail. Initially, that kind of concentration would have caused a blood pressure spike.
But this summer I have worked three shows with my husband and done all of it—lugging racks of mortars around, placing, e-matching, dropping and wiring shells and breaking down shows afterwards. I have more fatigue than I did last summer. It’s been difficult at times. But I’ve still managed to do it. Hand firing was actually easy, because that’s not a time when you’re relaxed. I had a feeling of intense fear in my shower after the show, when I started to feel relaxed. I just ignored it. I even fired a six inch shell this summer, the largest shell we would ever hand fire. That would be an accomplishment for me even before being floxed.
Somehow that flood of what I call “real” adrenaline from shooting a fireworks show eliminates my anxiety symptoms afterwards for at least a couple of hours. While cleaning up after both hand fired shows I felt completely normal, the best I’d felt in ages. I expected a major relapse within the next few days, but it didn’t happen. My symptoms keep cycling, good days and bad days, but no major relapse has come from any of the heavy physical activity or the adrenaline rush of hand firing.
I knew that I was really getting better when at midnight I was dragging a rack of six inch mortars out of the sand trap on the golf course where we shot the show. My husband estimates six inch racks to weigh around 85 pounds. Working fireworks has helped me regain a lot of the muscle I lost from being floxed. I have always been very strong for a woman and built muscle easily. It felt so horrible to me when I lost so much muscle tone from the Cipro. My body didn’t feel like my body. It didn’t feel solid and strong. I hated that feeling of weakness, having spindly little arms and legs. My body feels solid again, kind of bulky from muscles built up from dragging fireworks equipment around. It feels great, because it feels like me.
I have some difficulty at times doing what I’m doing now—typing on the computer. Reading, watching tv, or playing on my iPhone can flare my anxiety and bring back some of those weird nerve sensations in my face. Sometimes I feel fear looking at the screen of my iPhone. But now I find these symptoms interesting rather than upsetting. They are just part of living with a damaged CNS. I perceive more clearly that in the modern world it’s very hard to relax. Even when we think we’re relaxing, we’re actually being stimulated. Over stimulated. It is not the worst thing if sometimes I have to walk away from electronic forms of entertainment. It is not terrible that being sedentary reading a book makes me feel worse but scrubbing my kitchen floor makes me feel better. My house is getting very clean! I still take time to just sit and relax, either listening to music or just sitting in silence with my kitty, Monty.
These are the main symptoms I had, divided into three stages of my experience with FQ toxicity:
*Brittle, loose, sensitive teeth.
*Loss of muscle tone.
*Weakness and instability in knees, ankles and to a lesser extent wrists.
*Panic attacks while trying to sleep.
*Extremely tight calf muscles, but tightness almost everywhere to some degree. (The tightness was worse in lower body than in upper body. My shoulders and neck did not seem to be affected at all.)
*Feeling that my Achilles’ tendons were brittle, crunchy and completely inflexible.
*Tinnitus (very loud and in a pitch I’d never had it before)
*Inability to stand for more than a few minutes without muscle pain and cramping.
*Depersonalization: not recognizing myself in a mirror. Feeling like I was sitting next to myself instead of being in my own body.
*Lack of ability to feel emotions, except fear.
*Peripheral neuropathy: sensation of cold in left arm and left side of my neck.
*Sensation of brain squeezing/vibrating.
*Sensation that entire body was vibrating.
*Complete inability to sleep or relax.
*Nerve pain and numbness in right side of face.
*Rapid heart beat.
*Fatigue, but inability to sleep or even relax.
*Feeling like I wanted to crawl out of my own skin.
*Unable to stay in one position very long because it would cut off my circulation or cause my nerves to tingle.
*restless leg syndrome, but sometimes affecting my whole body—a pressing need to keep moving.
*Most of these symptoms were made worse by attempting to sleep or relax.
*BP still an issue, but not spiking as high.
*Peripheral neuropathy involving temperature sensation is gone, but some burning sensations on skin starting in random parts of my body, increasing to intense burning over entire body including scalp, which lasted one day.
*Intense feelings of anxiety.
*Increasing tightness in ankles, but decreasing muscle tightness in calves.
*Profound fatigue that would come on without any warning, as if someone had pulled the plug on me.
*Myalgia while at rest.
*Muscle twitching at times.
*Some muscle pain with standing, but not as intense.
*Increased stiffness and soreness after physical activity.
*Tinnitus was loud at times, but then completely absent at other times.
*Really, really stuffy nose that would last for one day.
*Inability to deeply relax.
*Fast heart beat, but not as bad as initially.
*Killer insomnia: every time I’d try to sleep symptoms would worsen to as bad as initially or worse, but this only happened a couple of times.
*Improving sleep, except for nights of killer insomnia.
*Numbness, nerve pain in face still present, but not as bad.
*Feeling of being completely unable to tolerate watching tv, typing on computer, playing with iPhone.
*Ability to exercise limited by swelling of ankles and increasing tendon pain.
*Very sharp pains in left Achilles’ tendon sometimes followed by a feeling of a thin layer of cells tearing or giving way. The pain would be less after each time I felt like something tore.
*Many symptoms still aggravated by sleep or relaxation.
*BP completely under control, but sometimes systolic will rise to 130. Diastolic is often below 80.
*Windows of complete normalcy followed by return of symptoms.
*Achilles tendon is healing, decreased incidence of ankle swelling noted.
*Soreness/tightness in ankles persists, but is decreasing gradually, unless I overdo it.
*Difficulty tolerating watching tv, typing, playing on iPhone for long periods of time, but can sometimes do it for limited time without symptoms, Usually symptoms are tolerable, but annoying.
*Bells Palsy on right side of face, but appears to be responding to facial exercises.
*Burning sensations and myalgia in right arm at times. Burning along tops of ears once in awhile.
*Feeling of fear at inappropriate times.
*Difficulty falling and staying asleep at times, other nights I get normal sleep.
*Killer insomnia infrequently, not as bad and does not last the whole night.
*Rapid heart beat at times.
*Feelings of anxiety, nerve pressure in my face, tightness in my chest come and go and can leave completely and suddenly, causing me to feel an intense sensation of relief and well being.
*Most symptoms relieved by being physically active, aggravated by sedentary activities, especially those involving concentration such as reading or writing.
*Some flaring of anxiety symptoms from listening to the radio while driving the car.
*I still fatigue more easily than is normal for me, but it’s not like someone pulled the plug on me. I can keep going.
*Not as strong as I was, but I am able to build new muscle as I normally would.
*Tinnitus getting better, but can become quite loud when fatigued. Sometimes it is absent.
*Stuffy nose for one day still happens and my ears can get full of congestion as well. This could be normal allergy stuff or it could be the Cipro—hard to tell.
*Takes a very long time for me to wind down, relax and fall asleep.
All my symptoms have cycled since day one, with good days and bad days. My only major relapse was at about one month out when I quit supplementing magnesium. Here is everything I take, in no particular order:
Magnesium (400-900 mg)
Vitamin C (2,000 – 5,000 mg)
PQQ (10-20 mg)
Idebenone (50 mg 3x a day)
Acetyl L-Carnitine (500 mg once or twice a day)
MitoQ (as recommended on the bottle)
L-Theanine (200 mg 3x a day)
L-Tryptophan (one to three pills at bedtime only)
Selenium (100 mcg)
Calm PRT (from NeuroScience) (3-6 pills a day)
Alpha lipoic acid (250 mg) and Benfotiamine (150 mg) (for tinnitus)
Methylated B-12 (1mg to 10 mg a day)
Vitamin D3 (get your levels checked)
Vitamin E (400 mg a day is optimal)
Zinc (25 mg when I think of it)
Progesterone (80 mg for HRT, not to treat the Cipro anxiety)
Verapamil (for hypertension/migraines)
I was taking Milk Thistle to help protect my liver, but discovered I am allergic to it. Also, I’m not such a fan of it after learning that it protects your liver at the expense of the rest of your body. I’d avoid that one. You can’t treat Cipro toxicity with progesterone. I take it for hormone replacement therapy only, after having my hormones tested. I take the very lowest dose possible for me. (Progesterone binds to GABA, so be careful with it.) In addition to the supplements I cleaned up my diet and cut out all processed sugar and alcohol. I eat a lot of fish, berries, veggies, yogurt, mozzarella cheese and nuts.
I bought the e-book “The Levaquin Tendonitis Solution” (Lisa’s affiliate link) by Kerri Knox, RN and Joshua Tucker, BA, MT. You can find it at tendonitisexpert.com and I do feel it is worth the money. You get access to their online forums and it was Kerri who told me about PQQ, which can stimulate the biogenesis of new mitochondria in aging cells. MitoQ and Idebenone are strong antioxidants and very effective against Cipro damage, but they only help your body destroy damaged cells, they don’t stimulate new cells to grow. The mechanisms by which antibiotics like Cipro and Levaquin damage your body are well explained in that book. There are good suggestions of what supplements to take as well.
I sometimes take a calcium/magnesium supplement, but I usually just get calcium from my diet. I think initially I might have been low on calcium and zinc as well. Cipro can chelate more than just magnesium out of your cells, though it seems to prefer to bond with magnesium. Sometimes taking a calcium/magnesium/zinc combo pill would calm a BP spike, so I’m guessing my blood chemistry was quite messed up initially.
I credit my healing to the fact that I acted fast, saturating myself with magnesium. I did strong magnesium baths and I’ve tried the angstrom magnesium, which is less likely to cause diarrhea. I started with magnesium oxide, but that’s the least absorbed one. Damaged GABA receptors can cause a paradoxical response to magnesium, wherein you feel agitated, get a rapid heartbeat, rising blood pressure, etc… It does the exact opposite of what magnesium usually does, which is relax you. But you still need the magnesium. When I would have that happen, once I realized what was going on and quit running to the ER, I just stopped supplementation for a couple days and went back to it when my damaged CNS could tolerate it again.
The people in the ER are usually just useless when it comes to being floxed. My neighbor was recently floxed and they gave her IV supplemental magnesium and sent her home a few days later, never connecting that her dangerously low blood level of magnesium was from the Cipro she had been taking. Until she talked to me she didn’t know what had happened to her.
I apologize for the length of this article, but I know that there are many people out there just like my neighbor—desperate to find out what has happened to them and hoping to find a cure. That’s why I am listing all my supplements and medications and giving a detailed description of my symptoms. People often ask, “Has this symptom happened to you? Did it go away? What did you take to get better?” I’m hoping that my story answers many of those questions, and I know there will be those motivated to read it all, searching for a reason to hope for a cure.
THE REASON FOR MY HOPE
FQ toxicity can put you in a very dark and terrifying place. I thought in the 1980’s and I believe still that the creation of these drugs was influenced by demons. There can’t be a more horrible experience for the human mind than to be trapped in a body deprived of magnesium, with damaged GABA receptors. And don’t forget the mitochondrial damage going on from severe oxidative stress, damage that can sneak up on you just when you feel like you’re starting to get well. It’s like death, but most people don’t die. They just become trapped in a place from which death looks pretty good, because they know they can’t really live like that. They can exist, but existing is different from living.
I was in that place. Even though I wasn’t floxed as severely as some (I never lost my ability to walk) I certainly experienced a darkness like nothing I’d ever known or imagined. It’s still with me at times, so I continue to call upon the One in Whom there is no darkness at all. I believe demons created Cipro because being poisoned by it puts your mind into a place where you feel completely separated from everyone else, even from God. There is nothing more lonely than listening to your husband snore all night while every time you even relax a little your muscles cramp, your ears ring, your skin burns and your heart pounds and you know there is nothing else you can take, nothing any doctor can do—you are just stuck there.
But I wasn’t stuck there alone. Jesus promised to never leave me nor forsake me. If Cipro is a drug of demons, then it comes from the father of lies, and nothing your heart tells you while you suffer its effects is true. Nothing can keep us from the love of God. Not even FQ toxicity.
I divided my symptoms into acute, subacute and chronic because I think that’s how Cipro toxicity works most of the time. There are people with so much DNA damage that they can’t come back from it, but that is a small minority. I think taking antioxidants like Idebenone and MitoQ can lessen your chances of being in that minority. I think if you give your body what it needs to heal, including time, you will get better. Maybe not 100% better, but to a place from which you can live your life instead of just exist in it.
Mental attitude is key, because your own anxiety can make the Cipro induced anxiety much, much worse. As you move into the subacute and chronic stages you have to force yourself to take your life back. Another floxie on this site put it this way, “Fake it ‘til you make it.” That really helped me. If I can get to 100% healing, I’ll be ecstatic. But I have to live my life regardless—manage symptoms, decrease stress, keep working at anything that will promote healing and throw off anything that hinders it.
Now that I can feel emotions normally again, I am finding that FQ toxicity sometimes provides insights and emotional experiences I otherwise would not have had. One Saturday night I had that killer insomnia most of the night, but I still got up to play organ Sunday morning. I was practicing the hymn “When Peace, like a River” before church. I happen to know that the words to that hymn were penned by Horatio G. Spafford, while the ship he was sailing in approached the spot where another ship carrying his wife and children had recently went down in a storm. After the night I had had I could really feel what he felt as he penned those words. Only Cipro induced insomnia could induce feelings similar in intensity to those experienced at the loss of one’s entire beloved family. Only the horror of my experience of FQ toxicity could have caused me to sing those words with the exact sentiment in which they were originally written:
“Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
It is well with my soul, It is well, it is well with my soul.”
Lutheran Service Book #763 (verse 2)
I am not 100% recovered from Cipro toxicity and I may never be. But it is well with my soul. My life is good and I am more thankful than I have ever been for all I have. My prayers are with all those who are experiencing this horror and it is my hope that we can influence the medical community to stop prescribing these dangerous drugs as first and second line agents.
That God can use even the horrific experience of FQ toxicity for good is not an excuse for it to continue. That some people gain greater health after being floxed, by switching to healthier habits, does not make it ok that they were poisoned. Some day doctors will wake up to this fact. But in the meantime, if it has happened to you, you do have the support of the floxie community. There are resources available to you, there is help and there is hope.
October, 2014 Update
It has now been eight months since seven Cipro changed my life. I have come a long way since writing the above story, and although I am not 100% healed yet, the continued progress gives me hope. If symptoms are continuing to abate and to appear less frequently, then they are not really permanent!
I began taking magnesium threonate in August and I think it might have been the magic bullet for me. It was after adding this supplement that I noticed some real healing of my damaged CNS. I no longer have the pounding/racing heart beat. I keep expecting that symptom to return, but in over a month it has not. Magnesium threonate targets the mitochondria and crosses the blood brain barrier better than other supplements. That is the claim, anyway. I think it might be truly effective for restoring lost intra cellular magnesium.
However, the metabolite they pair it with is rather stimulating, and not just floxies are saying this in online reviews. Take a small dose and only in the morning! I think at least one of my recent nights of insomnia was mainly due to magnesium threonate keeping me up. I took one before choir practice thinking it would make me mentally sharp to play difficult piano accompaniments. It did! I was still feeling all mentally sharp at midnight, and who needs that?
I had that horrible killer insomnia only once in September and so far once in October, but each time I still got 4-5 hours of sleep. It used to happen three or four times a month, so I’m expecting to be rid of it soon. The drop in progesterone around the time of my monthly cycle seems to trigger it. I am unsure as to whether heavy exercise triggers it or not. It seems that maybe intense cardio can bring it back, but strength training has no negative effect. I will keep track and see if I can find a true connection between exercise and insomnia.
If I have normal for me insomnia (waking up in the middle of the night and thinking about stuff) I am actually better at getting back to sleep than I was before being floxed, due to having learned meditation techniques and being able to take a Theanine. L-Theanine helps my brain to be a less noisy place—it “cuts the chatter” as Dr. Whitcomb says.
I find myself tolerating listening to the radio while driving much better. I have a more normal response to watching tv, typing on the computer, doing paperwork and basically anything that requires a lot of concentration. These things can still flare my symptoms, but if I stop and take a break, I go back to feeling normal in just a few minutes.
My left Achilles tendon seems to be healing well. It didn’t much like when I rode my old bicycle up some big hills in August, but today I can stretch it aggressively without pain and I notice it doesn’t feel as bumpy in that area when I’m doing ultrasound on it. I have to force myself to continue with the stretching and the ultrasound now that I’m feeling more normal. It’s worth it because I had really tight calves, flat feet and bad knees before Cipro. I got custom orthotics finally, which help a lot!
I suppose if I add it all up, I’m better now than before I was floxed. My stamina seems to be very close to normal. Maybe it’s completely normal. I have to remind myself that I got tired sometimes before I took Cipro. I battled depression most of my life, and it is just gone now. I think it’s from the Idebenone, which has a positive effect on brain chemistry. For me it does what Prozac promised to do, without the side effects.
The most annoying remaining symptom is a burning sensation on the tops of my ears that comes and goes. But my left arm used to burn also, and that has stopped except for during a return of the killer insomnia or a really bad downturn. However, I had close to an entire month of symptom free or nearly symptom free days with the most notable symptom being the tops of my ears feeling hot. With the cold weather coming, that could be useful!
I have come to believe that MitoQ, Idebenone and PQQ really saved me, plus magnesium. These supplements target the mitochondria. The worst thing FQ’s can do to you is to damage your mitochondria. Otherwise you are dealing with a loss of functional magnesium (take some magnesium), downgraded GABA receptors similar to the experience of those in protracted Benzodiazepine withdrawal (give it time), a loss of antioxidants (take some good ones), and a loss of good bacteria (fix your micro biome with probiotics or foods like kefir.) Of course, any of these conditions left unrecognized can lead to permanent damage all by themselves. It’s such a shame doctors don’t know what to tell the newly floxed. Magnesium, Vitamin C and a big cup of kefir would go a long way to help people if they started with just those things from day one!
However, if the increased oxidative stress coupled with the loss of things like glutathione and SOD overwhelm a body and there is too much damage to mitochondrial DNA, it becomes a self-perpetuating cycle of damage, leading to more oxidative stress, leading to more damage and on and on. Supplements that target the mitochondria may be our best hope. MitoQ does that, Idebenone is also a very, very good antioxidant and PQQ stimulates the biogenesis of new mitochondria in aging cells. Add to that a magnesium supplement designed to target the mitochondria (magnesium threonate) and I think you have the closest thing to a cure that there is for fluoroquinolone toxicity syndrome.
Will it work for everyone? Absolutely not. FQ’s damage us in so many ways and not everyone has the same level of each type of damage. As cells are damaged the body tries to correct the problems and this can lead to paradoxical responses to supplements and medications, even new food allergies the person did not have before. As one system is affected, others topple as well. It’s very complicated and can turn into a big mess.
But for me, I believe that my mitochondrial DNA is now ok. I believe that after I took the Cipro I lost a lot of functional magnesium and antioxidants and that my body was quickly damaged by increased ROS. I definitely had mitochondrial damage—my damaged tendon was evidence of that. However, I do believe taking MitoQ helped to turn the whole situation around, over time, so that now I am dealing only with a damaged CNS (downgraded GABA receptors) and probably still some intra cellular magnesium deficits. Both my damaged CNS and my intra cellular magnesium levels will probably take a couple of years to be completely back to normal.
What I did may not work for everyone, and my theories could be wrong. But I know that eight months ago I was in the worst, most desperate situation of my life, and now I am mostly restored to normal. I started a new teaching job and am working almost full time. Over the summer I did all the normal summer things: hiked, biked, swam, even went to a water park. There were differences in what my body could do and I got tired, but as I look back I don’t remember the floxie symptoms I had at the time. I just remember having fun, living my life.
October 2015 Update
I’m writing this update because I found out some new things about MitoQ and I want people who have read my page to be able to make a completely informed decision. I found some research that indicates that MitoQ can become an oxidant if the CYP-450 pathway is not working correctly. Many floxies have trouble with this particular liver enzyme. If you find you are reacting to a lot of supplements and medications, don’t try MitoQ. If you have been trying lots of supplements and nothing has caused you a reaction you should still know that MitoQ is one of the many drugs that cannot be taken with grapefruit juice. The furanocoumarins in the grapefruit inhibit the P450 enzyme. Without sufficient amounts of CYP-450 the MitoQ could hurt you rather than help you.
I found out about this because it turns out lemons can contain furanocoumarins and if you drink a lot of lemon water (it’s good for the liver, right?) you can end up inhibiting the CYP-450 pathway. I started getting side effects from Verapamil at the same time I started with the lemon water. Verapamil is one of those drugs you can’t take with grapefruit juice. I also felt really, really horrible. I stopped the Verapamil and my blood pressure was ok without it so I discontinued it with my doctor’s approval. I discontinued the lemon water but kept taking MitoQ and I was fine.
If MitoQ does have a warning somewhere that I am not aware of, then good for them. If not, why not? A fellow floxie showed MitoQ to a nerve specialist he was seeing and she said some of the additives in MitoQ are not good for promoting healing of nerves, so that is also something to consider. I wasn’t hit hard with neuropathy so I still finished what I had and bought my friend’s remaining supply as well.
I love the results I got with MitoQ, but I wish they would use more natural alternatives for fillers and do more to warn people about the grapefruit interaction. I definitely had improved exercise tolerance while on MitoQ. I don’t know if MitoQ alone would give the results I got or if it was because I was taking it with Idebenone and PQQ, but I could hike up bluffs like I was in my twenties again without becoming breathless. It was really amazing, especially for a floxie who had been sedentary for awhile. I couldn’t hike as far, but that initial climb up the bluff was easier than I expected. I still would have to rest at the top and keep my day’s total hike a bit shorter than I would have pre-flox.
Despite these concerns about MitoQ, if I had it to do all over again, knowing what I know now, I would still take the MitoQ. It is a targeted antioxidant. It actually gets to the mitochondria. It’s very hard to find anything that can do that. It’s actually hard to hurt our mitochondria. Fluoroquinolones can do it though. So for me, I chose a synthetic drug to undo the damage.
Not every floxie can safely make that choice. That does not mean they won’t heal. I think sometimes I don’t give enough credit to the NAC (N-Aceytl Cystein) which Dr. Whitcomb had me take when I was noticing swelling of my left Achilles’ tendon. NAC is so powerful they can save your life with it if you overdose on Tylenol. If you’re looking for a more natural product, NAC is better than MitoQ, which is a synthetic form of CoQ10.
I am still taking the Idebenone because it treats my pre-existing depression. If I back off on it to one or two doses per day the depression creeps back. I have been trying to wean off what supplements I can. It’s one thing to take something for a few months or even a year because you don’t want your tendon to snap. It’s another to say, “I will be on this for the rest of my life.”
I found a new product I feel very safe about taking for the rest of my life. It’s a micronized purple rice powder. After I started taking it three things happened within two weeks: my left Achilles’ tendon stopped hurting when I ran uphill as part of my workouts, my blood pressure dropped to normal and my blood sugar levels came down to normal instead of pre-diabetic. Then I had a couple pretty severe relapses of CNS symptoms such as the Cipro insomnia, having difficulty relaxing, nerve pain/pressure sensations and numbness in my face, inability to look at the tv screen, the feeling that life was just way too stimulating and my heartbeat would race occasionally. I still believe when our nervous system makes repairs we feel it.
Soon after those relapses I had a normal window that was more normal than anything I had experienced to date. I thought I had been back to normal, but I was actually tolerating a lot of hyperactivity of my central nervous system. Though highly productive, I wasn’t exactly comfortable. I started to feel really, really relaxed. I also felt happier. And my sleep got a lot better. I sleep through the night a lot more often now, and that was not a common occurrence for me even pre-flox. This doesn’t happen every night, and I still can get that Cipro insomnia now and then, but it is often fleeting and the symptoms are a shadow of what they once were. I started the purple rice in March and I would say, other than a really bad relapse in April, my life has been a lot easier, a lot more pleasant and a lot more normal since then. I’m slightly less productive. Now that I feel good I would rather do something fun than just work all the time.
I also have noticed that I am cognitively quite sharp. I don’t know if that’s the rice, the Idebenone or actually a symptom of my autonomic dysfunction, but I have days when I can play counterpoint on the organ like nobody’s business. I can perceive multiple melodies at the same time while I’m playing. I never did that before. I usually hear the top line as a melody and I struggle along to fit everything else in under it, and although the separate melodies are there I can’t usually perceive each of them while playing. Only if I’m sitting back and listening. I can not only play Bach now, I can analyze it while I’m playing and at the same time be thinking about what I’m going to have for lunch. It’s like this super brain. So if you have cognitive issues, don’t be afraid. I had them too. Terrible brain fog. Now I get super brain. Go figure.
I buy the purple rice from Kare Possick. Her number is 727-798-8764. She knows a lot more about it than I do, but I will say that it has every amino acid, lots of antioxidants and many, many nutrients. Some floxies get a rapid detox from it. I did not. I prefer the powder to the capsules. I put a small teaspoon into a bottle of Dasani a couple times a day and just shake it before I take a drink. If you order it and go on autoship I will get a free bottle if you say I referred you. I’m disclosing that, so that you have the choice not to use my name if you wish. Or use Lisa Bloomquist’s name, creator of floxiehope, and tell them to send her a bottle. She certainly deserves it and would probably enjoy it.
I like that it is just food. There aren’t additives, it’s not a synthetic. It’s just a highly nutritious, bio available food. I found out about it by reading one of Kare’s advertisements for it on Facebook. The person who wrote about how the rice helped them sounded like a floxie to me. She had this mystery illness of sudden onset, lasting for months. She claimed the purple rice gave her complete healing in about six months. That got my attention.
I also have found that uridine works really well when I get that horrible insomnia and nothing else is helping. Uridine has it’s own receptors in the brain, so maybe it is a way floxies can bypass GABA receptor damage. I cannot prevent a relapse with it. I take it after the relapse starts, 500-750 mg with a fish oil capsule to help it work better. It’s something to have in reserve for those times you just want to crawl out of your own skin and you need to get some rest. Taking it every day did nothing for me. It has to be timed just right, at the moment that every time I’m starting to fall asleep symptoms are getting more intense and now I’m standing there by my bed with my skin just burning, knowing I am not going to sleep. A couple uridine and I’m out within thirty minutes.
I am much, much better than last year at this time. I worked so hard to learn to relax again, to learn to appreciate beauty again, that as my nervous system heals and I still have those skills I find myself feeling better than I ever thought possible. I feel physically stronger than I did last year by quite a lot. I do a lot of walking and some strength training every week. I think my magnesium levels are coming up. My standing and walking tolerance is excellent. There are times my stamina will just fail me and that may be due to mitochondrial damage. I absolutely listen to my body and rest when I get that feeling that my batteries have suddenly become depleted, even though I could push through it. I don’t. I rest when I need to. I stop when something isn’t feeling right. But most of the time, for what I want to do, I have the physical capacity to do it without pain and without fatigue. I worked a six week cleaning job this summer and although I got sore at first, my body adapted to it quite well.
At the start of my reaction to Cipro I could barely vacuum one room of my house without feeling completely exhausted and sore. It felt good to be able to work a cleaning job. “Take that, Cipro! Ha!” I always feel triumphant when I get a little more of my life back.
In some ways I had a very rough summer. I caught bronchitis in May and didn’t get well again until September. I got a sinus infection. I had plugged ears. Very few flox symptoms, but I could tell I was fighting an infection. Taking conventional antibiotics gave short term relief but then made the situation worse in the long run. I ended up with tubes in both ears like they often have to do for kids! Ugh.
Things didn’t turn around until I started really pushing probiotics, both foods and supplements. I take Floragen. In addition to drinking kefir I started eating raw sauerkraut. It actually says “Probiotic” on the bag, it’s refrigerated and you have to eat it cold. The brand I buy is Saverne. I hate eating sauerkraut. Blech. But my new motto is, “If it is good for me, I will choke it down.”
I think I underestimated the importance of probiotics after fluoroquinolone exposure. Back in the late 1980’s, after having Cipro the first time, I remember being constantly sick for awhile. I found out that 70% of our immune systems are our healthy bacteria. The more I add probiotic foods the better I feel. When I eat wheat or processed sugars I don’t feel as good. I also have been eating a lot of kale. Turns out it’s really packed with nutrients and has a lower oxalate content than spinach. Good foods really help me feel good. If I get all stressed from reading about FQ toxicity online, I switch to researching foods I’ve been eating and read all the good things they are doing for my body. My anxiety evaporates and I feel happier.
I did do some things to relieve worries about the future, and that was to get an Advance Directive in place stating absolutely no fluoroquinolones, even in a life or death situation and I made sure that my doctor changed it in my chart so that all drugs in that class are contraindicated for me. Luckily, his computer system allowed him to select the entire quinolone/fluoroquinolone family. Some facilities don’t have that, so you need to have the doctor put every single quinolone/fluoroquinolone into your chart individually. If you were given Cipro they can’t just say no Cipro, because then you might be given Levaquin.
I spoke with a lawyer and he said a Living Will (Advance Directive) is a good way to go, because even though it may still be ignored it gives you better grounds from which to build a legal case if you are given an FQ and need to sue somebody. My doctor also felt it was a good idea to have it spelled out that I don’t want FQ’s in any situation. I told him that even if withholding an FQ would mean certain death for me, he would need to let me go and know that my soul is at peace. Sometimes the price of prolonging life on this earth is just too great. Other floxies may make a different choice, but that is mine—to face death before being floxed again.
The biggest danger we face as floxies, other than giving into despair, is the chance that we might be floxed again. Things like an allergy bracelet and getting “no FQ’s” in your chart are good, but possibly not enough. I used Legal Zoom online, but you can get the forms for an Advance Directive (or Living Will) for free. I wanted to make completely sure all my ducks were in a row, so I paid for some extra help with it. You don’t have to, but I would suggest making your wishes known. If you would rather not receive FQ’s even in a life and death situation, you need to make that known, because even a very good, compassionate doctor might decide that you’d rather be floxed and alive than dead from an infection. When making this decision remember that every subsequent time you are given an FQ your reaction will be worse. This is pretty well documented and many floxies who suffer long term or permanent disability have been floxed multiple times. I don’t want it to seem like I’m saying that death is a good thing. Death is our enemy. But I think that for me, if FQ’s are the only option, then there really is no option and if the Lord wants me, He’s going to take me home, and if it isn’t my time He will preserve my life without them.
This has been a very great worry for me, yet it wasn’t the Advance Directive that finally gave me peace of mind. It was remembering that the One who created me is still in charge. He is greater than anything in this world and my life is in His hands. Even were I to be floxed again and survive (I’m honestly not sure if I would survive given how very sensitive my GABA-a receptors are to these meds) God would get me through it. Even if I lived in torment for years before succumbing to FQ toxicity, it really wouldn’t matter, because the heaven Jesus won for me at the cross would still be mine. In the words of Luther’s famous hymn: “And take they our life; goods, fame, child and wife. Let these all be gone. They yet have nothing won. The victory ours remaineth.” Nothing, not even a life completely devastated by FQ toxicity, can take away the victory that is mine in Christ Jesus. That thought gives me the courage to go on, come what may.
I hope everyone reading this is doing well and staying positive. Just because our bodies don’t work the way they used to is no reason to think that we are out of the game of life. I like to think about Beethoven and the fact that he actually was poisoned. He didn’t just deal with deafness—he was severely ill for most of his adult life, probably from lead poisoning. Yet, look what he accomplished. His creative output is astounding and outlives him. Doing something, anything creative is good for us. It reminds us of who we are. If we can’t exactly do the things we used to, then it is good if we can find alternatives that still allow us creative expression.
I embroidered a couple of squares for a quilt my mom made for my sister’s birthday. Sometimes working on it would flare my symptoms. Concentrating on it would make my face go numb. Once after four hours straight even my forehead was numb. It felt weird. But it went away after I rested for a bit. And now my needlepoint work is part of something bigger—a tapestry of memories that can be passed down to others in our family.
I’ve also been using a lot of music I wrote with the kids in my new teaching job. When they respond well to songs I wrote I feel so alive—even if my flox symptoms are flaring it doesn’t matter when I’m watching kids enjoy my music. The most important thing is not whether I heal 100% from being floxed. I really don’t know if that will be possible. Considering the severity of my initial reaction, I’ve got a good chance of this haunting me at some point later in my life. But I’m not paralyzed with fear about it, because the most important thing I can do is to simply be who I was created to be, floxed or not. Thanks be to God that He has preserved my life and my health so that I can do that. I pray that everyone reading this may find health and healing.
March 2017 Update
I have tried a couple more things since I last posted on floxiehope, so I thought I would share them with you here. I suggest, as always, to do your due diligence before trying anything new.
You may want to look into Frequency Specific Microcurrent or FSM. I found out about it while taking a continuing education class for my physical therapist assistant license. The class was about increasing parasympathetic nervous system function in order to treat chronic pain. After sharing my story with the instructor she suggested I try FSM. She said that it is better than acupuncture while being less invasive and that it can help your body replace lost GABA receptors. It also increases ATP production by 500%. I don’t know about the validity of those claims, but FSM is approved by the FDA for treating chronic pain. Maybe it does so by increasing parasympathetic nervous system function.
One word of caution for floxies: FSM also causes the body to detox rapidly. If your detox pathways are compromised this may not be a safe therapy for you. Also, I suspect it really does help to upgrade GABA receptors because every time I get FSM I experience an uptick in symptoms such as anxiety and burning sensations on my skin followed by improvement in my overall condition after these symptoms subside. I am at three years out, though, so even the uptick in symptoms is barely noticeable. For someone in the early stages there is a strong possibility that their symptoms could temporarily be made much, much more intense by FSM before feeling any benefit. It is my theory, based on stories of people going through Benzodiazepine withdrawal (which is known to be caused by downgraded GABA-a receptors) that when our autonomic nervous system is repairing itself we get an increase in symptoms of dysautonomia and when it is taking a break from healing we get the normal windows that are a hallmark of Benzodiazepine withdrawal. I think this is one possible reason many floxies feel worse before they feel better. If you were not hit hard by the psychological symptoms you will probably not experience that uptick in symptoms from FSM. Supposedly, FSM can help with tendon healing and can be used to treat peripheral neuropathy. My main improvements from it have been with the psych symptoms. There is a protocol for adrenal health, which I tried during my latest relapse with good results.
I also added colostrum from Sovereign Laboratories. Theirs seems to be well absorbed because of the liposomal delivery. Many floxies react to things with a liposomal delivery– some even react to fish oil. If that is you, do not get your colostrum from Sovereign Laboratories. For me, the colostrum stopped me from constantly being sick from kid germs. Colostrum is the first milk baby cows get so it contains antibodies from the mother cow, helps seal a leaky gut and is very nice if you want to work out and build some muscle. If you are lactose intolerant this is not for you, obviously.
I also wanted to honestly report that I did have a very severe relapse lasting about a month in November and December of 2016. My teaching job this year is very stressful and teaching music to elementary students is going to tax anyone’s nervous system. It is loud, stimulating and keeping track of those wiggly little bodies is a lot for even someone with a normal autonomic nervous system. I also was sick with a sinus infection, but chose to ride it out instead of taking antibiotics again. I think it was just a lot for my system to handle.
I had been feeling for awhile (even during the summer) that I just did not have the stamina I needed. Physically yes, but mentally and psychologically I did not. It seemed like stimulation would just build up on me and I would need to go home and rest long before I felt like my body needed rest. I couldn’t work out after school because being in the gym was too stimulating an environment after a day of teaching. After the bad relapse I had (which took me from 98% resolution of symptoms to about 30%) I have noticed an increase in stamina. I now am able to go to the gym after work. I feel like I am handling the stress of teaching a lot more normally. Since the beginning of 2017 I would say I am 99.9999% healed.
I do not work out as hard as I used to. My cardio sessions are short, with only brief bouts of intensity. I do a lot more weights and stretching than I used to do, but I am tolerating both very well. I am gaining strength normally– not to preflox strength yet, but I will get there. I was pretty strong, so it will take time. I work out now because it feels good instead of to punish my body for being fat. Sad that it took getting floxed to make me able to accept my body as it is and treat it well. Crash dieting and marathon exercise sessions at high intensity set me up to get floxed and the crazy thing is– they did not even make me thin! I am losing weight now, but I think it is mainly from pushing probiotics. There is some evidence that obesity can be caused by an imbalance of gut flora. There might be something to that.
I hesitated in providing this update as I have been contemplating taking my story down and distancing myself from the floxie community. I have been under pressure to do this and accused of harming people. Certainly it was never my intent to harm anyone. I believed that it was my responsibility, after getting knocked down, to turn and help others who had been knocked down in the same way. I believed that I could and should attempt to save lives by saying that it is possible to get up again after a quinolone knocks you down. The intense suffering caused by floxing and the fact that suicide ideation is actually a symptom make FQAD a life and death issue. And more are being affected every day.
I spend a lot of my free time trying to talk fellow floxies out of killing themselves. As I do this, I also fend off fellow floxies telling me to shut up and go away. They tell me I am giving false hope. They tell me that treatments that helped me are harming other people. They tell me I am guilty of practicing medicine without a license and harm incurred by anyone trying something I tried is on my hands alone. They say that we must stick to what the FDA recommends and what medical professionals would tell us and that sites like floxie hope are dangerous and full of quackery.
Well, here is the reality my friends. Every single one of us who have been floxed are now part of a medical research study. Even if you opt out of trying anything suggested on floxiehope, you are still part of this clinical research, because you are testing if time alone can heal us. Everything we do or do not do, every symptom we experience, every theory we put together as to what happened to us based on that experience is part of this new body of medical research into how we get floxed and whether floxed bodies can heal.
To tell other floxies to shut up because their theories do not agree with your own is to limit and taint this medical study. We should not stop this study because it is about the only research going on into what causes floxing and what will help us. The medical community is not doing it. They don’t even believe in FQAD and even if they do, where will they get the money to study floxing? From the drug companies? We are it. What we try or do not try and every time we describe what happened to us we contribute. Someday somebody is going to look at the research we collected and it might just lead to a cure. This makes site like floxiehope invaluable.
On the flip side, yes, there is risk. But the fact that we are put in a position of risk is not the fault of fellow floxies who say “such and such helped me” but rather the fault of greedy pharmaceutical companies combined with a corrupt or maybe just inept FDA, plus doctors with woefully inadequate training in pharmacology. The professionals charged with helping and protecting us let us down. Let’s not forget that.
I was told I should warn people about the dangers of taking glutathione if they have amalgam fillings. I am going to do my due diligence and tell you that glutathione is risky, but not just for people with amalgams. I suspect mobilization of mercury is not even the reason people react to glutathione. I have recently found some information pointing to certain gene SNP’s causing issues for people when they take glutathione. The problems are further exacerbated when they try to fix the problem with such simple things as B and C vitamins. The genetics of what is going on there is way beyond what I have time to learn about with my current work schedule, and since it does not affect me, I am just not that interested. But I share it here because I refuse to promote the junk science that says things like NAC (which increases glutathione) and glutathione injections are dangerous for people with amalgam fillings. I have eleven amalgams. I’ve taken NAC and had a glutathione IV. I have read cases of people severely messed up from glutathione who did not have amalgams. There is something else going on there, and being free from amalgam fillings is no guarantee you can tolerate glutathione. (I am quoting Dr. Whitcomb on the junk science thing, so if you disagree with me, take it up with him.)
I also repeat my warning that anything that causes a heavy detox is going to give floxies problems. Our detox pathways are almost always affected, often simply because of decreased parasympathetic nervous system activation. If you were about to be eaten by a bear your body would not be too concerned about detoxing: the bear would get you before the toxins. Go slowly with detoxing. Herx reactions are not fun.
I think if you are desperate enough to try a therapy that has proven to have severe side effects for a large subset of floxies then you need to also get genetic testing and find a doctor who does not have his head up his butt to interpret it for you. The first is expensive and the second is hard to find, but that is the reality.
Although there certainly can be underlying issues complicating a person’s floxing, I do not agree with those who say that FQ toxicity is really heavy metal toxicity, or really this or that virus or genetic condition. I think jumping in trying to treat other things while still in the acute stage of floxing can be dangerous. When a floxie finds out he or she may or may not have another underlying medical issue complicating things it is a difficult situation. But it is not a situation all floxies share. Misdiagnosis of floxies is common, since our symptoms mimic other things. And keeping a level head is imperative!
Many of us are dealing with parasympathetic nervous system dysfunction. If we start to panic we will get worse. A lot worse. I found out, due to my high stress job, that our own stress is way more toxic than any toxin we might be exposed to and is actually harder on our bodies than the most distressing symptoms we go through as our GABA receptors repair themselves. Stressing ourselves out is a sure way to overtax our adrenals, and no one wants adrenal fatigue.
The road to panic can also take us right down the path to suicide. When floxing becomes not just floxing but mercury toxicity, and diseases like MS and Lyme, and toxins everywhere that could prevent healing suddenly it is just too much! The most important thing you can do as a floxie going through the acute stage is to just hang on, just keep breathing for one more minute and one more minute after that. Do everything you can to promote relaxation, a feeling of calm and a belief that you will heal.
Now I will be accused of giving false hope, but I have an answer as to why this is not false hope. Dr. Jay Cohen MD put the rates of severe ADR’s to Cipro much much higher than the 1% or whatever number is listed on the package insert. If he is right, and if every floxie did not heal, then this scourge would have stopped a long time ago. There are literally millions of prescriptions for quinolones written every year. If everyone who suffered an ADR were permanently harmed the FQ’s would all have been pulled from the market a long time ago. If more of us who healed came back and spoke out maybe this would stop. I am at a loss to explain the urging from those in the floxie community that I just shut up and go away. Is that not exactly what the drug companies want us to do?
I have never and never will take a penny for helping other floxies, so I also deny the charge that I am practicing medicine without a license. I will continue to promote a message of hope, because even if a person does have a concurrent medical condition that will have to be dealt with at some point, that can never happen if suicide becomes their answer first. I do maintain that people should find a doctor they can work with. I have three. Dr. Glenn Toth in Waukesha, Dr. John Whitcomb in Brookfield and my GP, Dr. Adam Holt in Milwaukee, Wisconsin. All three are excellent doctors who understand the dangers of quinolones, who stay up to date on modern pharmacology but also study alternative methods and the latest research into the real causes of disease and dysfunction. All three are proof that the medical community can do a lot better than to keep creating more floxies while denying FQAD exists.
I maintain that fluoroquinolones can downgrade GABA-a receptors in patients who are sensitive to quinolones, even though I have been told “my theory” about GABA receptor damage is false and has been causing people harm. It is not just my theory. The fact that quinolones can harm GABA receptors is well documented, because in studies it is always stated that the NSAID in combination with the quinolone increases the quinolone’s effect on GABA receptors by such and such percent. The effect had to be there in the first place for the studies to note that it is increased by NSAID’s.
To experience extensive damage to GABA receptors from a quinolone alone is probably rare. I still maintain it is what happened to me. However, it is not rare to experience this damage from taking Cipro and an NSAID or from being dependent on Benzodiazepines and then taking a fluoroquinolone antibiotic. Just because the way I was damaged is uncommon does not mean that I am not able to help people with similar damage that happened through the unfortunately quite common but very dangerous drug interactions of FQ’s with NSAID’s and/or Benzodiazepines.
Dr. Toth pointed out to me that some people have a genetic make up that allows them to take Cipro with an NSAID without harm to their GABA-a receptors and some, like me, can suffer significant harm to them by taking an FQ alone. Not every floxie has damage to GABA receptors. I know that I did, based on the research showing that FQ’s can cause that type of damage and from the similarity of my symptoms to those taking other drugs known to downgrade GABA receptors. My recovery has followed an almost exact parallel to Benzodiazepine withdrawal, except for the addition of some tendon damage and slightly longer course of healing. Thanks to neural plasticity (the ability of our nervous system to remake itself, to adapt) the prognosis is very good for anyone with downgraded GABA receptors.
However, at Dr. Toth’s urging I have also focused my attention on probiotics and have found improvement in my mood since doing so. Loss of healthy flora can have a negative effect on mental health. So drink your kefir and try to believe that everything is going to be ok! I have been trying kombucha as well with good results. I enjoy this kombucha soda called “Live!” Every time I drink one I feel really happy the next day. It has happened often enough that it cannot be a coincidence. Look for it in the refrigerated section. Keep in mind that increasing probiotics suddenly can cause a die off of unhealthy bacteria resulting in a release of toxins, so start slowly. Your doctor (if he or she is really good) may have recommendations of specific strains of probiotics to treat your specific symptoms. Life Extension offers some probiotic supplements designed to support specific areas of health based on current research with specific types and strains of bacteria.
The psychological symptoms of drugs like Cipro are the most terrifying of all flox symptoms, I think. I am not saying it isn’t terrifying to lose muscle tone overnight and have your tendons start tearing, but the psych symptoms are even worse. You lose yourself. It is like death– as close as you can be to death and still actually be alive. I know what it is like to live with a nervous system no longer equipped to deal with interacting with its environment. I know what it is to lose cognitive function, to lose aspects of your personality, to lose the ability to feel emotions normally, and to lose any ability to relax, to feel joy or to truly live in this world. I went through that. I just existed for awhile.
But I survived and I got back literally everything I lost. I am completely myself again. I did it in my late forties, on the cusp of menopause with eleven amalgam fillings still in my mouth, eating more junk food than is prudent, not eating organic all the time, pushing myself harder physically in the early stages than was probably a good idea and having a very stressful job. Oh, and I also had a significant, long term exposure to lead in my childhood when I helped my family renovate our old house. We lived in a haze of lead paint dust for years. I found out lead can get stored in your bones and cause problems later if you get osteoporosis. Do you see me panicking? No! I am ok. I am living my life and it is wonderful. I am joyful, I laugh a lot, I have a good life. Is my body perfect? No. Is my health perfect? No. Because life on this earth is not perfect!
Life on this earth is like tent camping. When you go tent camping, even if it is really fun, it is always somewhat uncomfortable. It is just not the same as being comfy in your own bed at home. Getting floxed is like that moment tent camping when the lightning is flashing, water is pouring into your tent while the wind threatens to take it down, you are worried a tree could fall on your tent at any moment and you just discovered that a snake had crawled into your sleeping bag with you to keep warm. But it is ok because you never intended to live in a tent forever. You have a warm comfortable home ready for you and one day Jesus will take you there to be with Him forever. Until then, just remember, earthly life is like tent camping and tent camping always sucks at least a little bit! But sometimes it is kind of fun.
If you are still lost and in that hellish post flox place, see my hand reaching to you and hear my voice saying that it will be all right. Don’t give up. You can live again. Your ability to handle stress will return, your ability to sleep normally and to think will return and when it does you will be able to focus on healing whatever else is still going on as a result of getting floxed and it will be ok. Maybe not perfect, but it will be ok.
** 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, effect 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.