Ruth’s Story – Cipro Toxicity

Ruth

*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:

ACUTE

*Brittle, loose, sensitive teeth.

*Sagging skin.

*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.

*BP spikes

*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.

SUBACUTE

*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.

CHRONIC

*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)

Fish Oil

Progesterone (80 mg for HRT, not to treat the Cipro anxiety)

Zyrtec (allergies)

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.

** 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.

762 thoughts on “Ruth’s Story – Cipro Toxicity

  1. Sarah August 16, 2016 at 1:07 am Reply

    Hi Ruth,

    Can I ask how much magnesium you take daily? At the moment I’m taking 400mg of magnesium glycinate split into two doses, plus spraying magnesium oil on my feet and ankles twice a day.

    Also, what are your views on oxalates? I was doing quite well with my recovery, 2.5 months on from cipro I was able to walk normally with little pain, then I baked some almond bread and had three slices, I also started drinking hot chocolate again. After eating the almond bread in particular, within hours I was in agony with my achilles and also my posterior tibial tendons (which was a new symptom). I was back to square one again, I could barely stand and walking was impossible, like walking on hot shards of glass. I looked up almonds and tendon pain out of desperation and came across oxalates, which I’d never even heard of before!

    My recovery has followed a similar pattern to when I initially took cipro, a slow improvement, every day a little bit better. So 4 weeks on I can walk again, with moderate pain and I am slowly increasing the distances I can manage every day. I’m encouraged that my relapse has lasted less the half the time of the initial symptoms, maybe my next relapse (if/when it happens will last for even less time, hopefully). On the plus side, I have a mitochondrial disease and never knew that oxalates were something to avoid as no doctor has ever mentioned this too me, so every cloud, etc, etc!

    • Ruth Young August 16, 2016 at 5:53 am Reply

      I never had a problem with oxalates so I just don’t know much about them. The problem comes at the end of a long chemical cascade of things that are wrong with a floxed body and although I read about it the other day I cannot recall the entire sequence. Might have been connected to methylation issues? Can’t remember–probably because it really didn’t pertain to me.

      I have a Facebook friend whose daughter has an issue with oxalates so from her I found out kale is lower in oxalates than spinach so I switched to it, because it does seem that you are able to absorb more nutrients from a food lower In oxalates than higher in them and this would be true for everyone. So with a choice of two things so similar, the one lower in oxalates was the best one. But not having a real issue with them I am not able to advise you in what to avoid or how to make the whole situation better. The info is out there though– problems with oxalates do happen to lots of people so I am sure as you start digging into it you will learn so much.

      You can go up to a gram a day of magnesium. Dr. Whitcomb told me you can even go a little higher safely, but I start to get diarrhea if I go higher than a gram a day, so I am thinking that gram a day is pretty accurate and your body can’t use more than that. With healthy kidneys more won’t kill you, but you would be throwing money away since your body would just dump it. Glycinate is a good form and spreading it out is good. The amount you are taking is an excellent dose for someone who does not have a deficiency and did not take a drug that chelates magnesium. I think you need more. My source for that is that ebook by Josh Tucker and Kerri Knox. They suggest around 800-900 mg a day for about a year after taking a fluoroquinolone. It has been two and a half years and I am still taking that amount. I don’t have overt signs of magnesium deficiency between doses these days, so I probably could go down. I know if you take a high amount like that for a long time it can lead to neurological issues, which would be stopped by stopping the magnesium.

      The late Dr. Jay Cohen mentions in his last book that he cured himself of very debilitating neuropathy with high doses of magnesium, which he continued to take for many years. Then he developed dizziness and balance issues. He stopped the magnesium and everything resolved. It is like his body had had enough. I am not at that point yet, so I continue to take a lot. I think it took him fifteen years to get to that point. So it is possible to reverse a deficiency that was bad enough to cause severe symptoms. But it takes a long time. So for now I continue with the high doses of magnesium but I am alert to any signs that my body would be saying it is too much. Diarrhea usually is the first sign of that, so at times I back off on it. Other times, though usually around my period only, I get the loose teeth or muscle cramping that is reversed almost immediately with a magnesium pill. So I am not all the way there yet.

      But I was critically deficient prior to taking the Cipro. I ate nothing or junk food for a couple of years there and it just did a number on my health– oh, plus exercising like a crazy fool so I would not weigh four hundred pounds from the crap I was eating. I also had been floxed a few decades ago without knowing so that set me up for an underlying deficiency I am sure, especially since at that time I was barely eating anything ever, because thin means healthy, right?

      If I can get well, after all that, anybody can. Just keep giving your body what it needs and avoiding the things it seems not to like and you will get there. I had a bad relapse at about two and a half months so maybe it wasn’t even the oxalates. Don’t beat yourself up for relapses. Sometimes they are just natural cycles in healing, and even if it was from something you ate, this can be so incredibly complex that I think we all at some point have taken missteps that made us worse temporarily, but we still healed.

      • L January 21, 2017 at 8:45 pm Reply

        hey Ruth, I had Many of your side effects and some not listed. I am curious though if you found anything for sagging skin after? (Although I think I am much older than you, so may be no hope)

  2. Sarah August 17, 2016 at 1:22 am Reply

    Hi Ruth,

    Thanks so much for your reply. I’m going to up my magnesium as you suggested. Do you know if magnesium chloride is an okay option? I’m spending so much on supplements at the moment (I have other chronic health issues which require supplements too), that I can’t afford to double my dose of magnesium glycinate which is what I’m taking at the moment (400mg), as it’s so expensive. So I was going to add 500mg of magnesium chloride instead.

    I think you may be right about the oxalates. Maybe it was just a natural downturn in my healing, as I’ve eaten other high oxalate foods without any problems occuring. I’m probably going to continue to avoid the worst offenders, such as almonds and chocolate as I have a mito disease and SIBO, so these are foods to be avoided anyway.

    Thanks again for all your help 🙂

    • Ruth Young August 17, 2016 at 6:19 am Reply

      Sarah,
      I think magnesium chloride would be ok. I don’t remember reading anything negative about that one specifically. I personally like magnesium malate the best. I buy Thompson’s (comes in an orange bottle) and it is not expensive. I can get it at one doctor’s office or I get it via Amazon.

      Go slow with upping your magnesium, especially with a form that might not be the best absorbed type, because otherwise you could get diarrhea. The more you spread it out through the day the better and the less likely it will give you any problems.
      Ruth

  3. Sarah August 17, 2016 at 7:47 am Reply

    Hi Ruth,

    I’d really like to try the magnesium malate too, but I have IC and worry that the malic acid would trigger a flare, which is a shame as I have a mito disease and this form of magnesium is suppose to help with ATP/energy production.

    Thanks for the tip of increasing slowly, I’ll carry on splitting it over a few doses.

    Thanks again for your help 🙂

  4. kris t August 17, 2016 at 9:19 am Reply

    Ruth, thanks for your support. I have no metal fillings, had them taken out years ago when the debate first began. I did something different yesterday called craniosacrial manipulation. Their school of theory is that when the spine is not aligned correctly, you have pain everywhere. Today I am much worse though so I can’t say that it helped. In fact, it made my mental issues worse, but he did do some manipulation on my head. Does anyone know anything about this? He pushed an twisted areas all over my body. It was weird. Kris T

    • Tricia August 18, 2016 at 11:25 am Reply

      Hi Kris,
      I am going to get craniosacral massage in 2 weeks to try to calm my new symptom of nerve pain:(
      But! I have had it done before I was floxed, years ago for anxiety. The woman who did it was really good….it helped a lot, unfortunately very expensive, as all natural healing is:(

  5. kris t August 21, 2016 at 4:52 pm Reply

    Tricia, does she just do the head area? The doctor, I went to, did my whole body. He pushed and twisted everywhere and I was in pain all week with only one day that I was pain free. Of course, he wanted to start me on supplements first, saying my energy level was low. He felt I should be taking mushroom extract and ginseng. He sells them there. That is probably part of his profit and why he pushes those. Kris T

  6. kris t August 23, 2016 at 3:11 pm Reply

    Ruth, what do you know about adrenal supplements? Doctor today thought my adrenal levels were low, but how can he know without testing me? I guess it is a saliva test. Anyway, he thought i should take a supplement called Adreset. Have you heard of this? It has ginseng in it. I know you recommended the PPQ once and I wondered if that was for adrenal or just general fatigue. The dr said I would not heal unless my adrenal levels were normal. Kris

    • Ruth Young August 23, 2016 at 5:31 pm Reply

      Kris,
      All I know about adrenal supplements is that you can’t self diagnose and guess, because what works in one stage of adrenal fatigue harms in another. There is a whole continuum before you get to adrenal failure and you absolutely have to know where you are in that. Since your doctor tested you and seems to know about the importance of supporting the adrenals (many doctors don’t believe in adrenal fatigue unless you are incomplete failure) then I would guess the supplement he recommended is the right one for you. Of course, even for a doctor, treating adrenal fatigue is tricky. Listen to your body. You’ll know if it is making you worse and then he can adjust if necessary. I don’t know anything specific about that supplement, but you can probably google it. Wouldn’t hurt to do that to check for interactions or contraindications your doctor may have missed. But I would steer you away from trying to self treat adrenal fatigue and toward working closely with your doctor on that.
      Ruth

  7. Peter Leckie August 24, 2016 at 6:54 am Reply

    Hi Ruth
    Just wondering if I could PM or e-mail you in some way, I have a query but can’t find it here, there is so much info, it would just be easier is that OK? Thanks.

    • Ruth Young August 24, 2016 at 10:03 am Reply

      Just ask Lisa for my email. I’m no expert or anything though. I survived as well as I did mainly because of good genes. I would suggest Jay Cohen’s last book on FQ toxicity as a good reference and I pretty much did what he suggests (two years before the book came out) but that being said, even Dr. Cohen’s protocol cannot work for everyone. I was hit hard by the psychological effects so if you need some support dealing with anxiety, insomnia etc I can help.

  8. kris t August 25, 2016 at 12:51 pm Reply

    Ruth, here is the thing, the doctor did not EVEN test me for the adrenal fatigue which makes me leery of taking his supplement. He said he does this saliva test but since I live an hour away, to go ahead and try it that it would not hurt but could only help me. He is a DO and does sacrial-cranial manipulation.

  9. Lissa-Ann August 27, 2016 at 2:09 pm Reply

    Hi Ruth! I have something called Chronic Inflammatory Response Syndrome and mold toxicity as well as other genetic and autoimmune issues. I’m sure I’ve been on cipro before. I have so many similar symptoms. I found your post by googling “headaches from MitoQ”. I know I have trouble detoxing and clearing the toxins when I do detox. I have always had chronic fatigue as well. But the MitoQ triggers these intense headaches and fatigue that take a while to go away. I take many of the same supplements that you take. We have recently discovered that our AC is full of mold and thus I’m in a pretty intense crash. Living in South Florida though, most homes, including all the ones I’ve ever lived in, have some form of a mold issue. I get burning sensation in all my muscles, migraines, low activity tolerance, low bp, oxygen hunger, slow digestion, immense brain fog, weakness in my muscles, insomnia, among other things. I, too, trust and depend on the Lord Jesus for my salvation and sustenance. I truly wouldn’t be here today were it not for His intervention daily. None of my doctors know what to do with me. I am a mom to 5 and my unsaved father in law with Alzheimer’s lives with us. And my husband travels for work. We have multiple things falling apart in our house like the AC and the water purifier for our well water. And in the midst of it all my health is declining. So many of my symptoms are neurological so I know I need to support my mitochondria. Thanks for your post. It was encouraging to read. I’ve been to Devil’s Bluff and couldn’t make it the whole way. Maybe some day I will!

    • Ruth Young September 3, 2016 at 7:38 am Reply

      Lissa-Ann,
      Sorry I took so long to respond. That is so cool that you have been to Devil’s Lake. Those bluffs are a challenging climb– not everyone can make it up there. The fact that I still can, as a Floxie, reminds me of how fortunate I am.

      Don’t take MitoQ if it gives you issues. It is a hard one for some Floxies to process. It requires the CYP450 pathway to be working well. At least for now you should probably avoid it and any medications broken down via that pathway. There are lots of ways to support mitochondrial health without taking MitoQ.

      Sounds like you might have adrenal fatigue. Try to find a doctor who believes in it and get tested and treated for it. Problem is, unless you are in full blown adrenal failure, a lot of docs don’t acknowledge there could be any problem with your adrenals. Seems kind of silly that they would not believe there could be a continuum of functioning and that a stressful situation could put stress on those organs as well, compromising their effectiveness. Find a doctor who will work with you, don’t just throw supplements at that or you could make it worse. Controlling stress will also help: meditation, yoga (if you can do it), deep breathing, getting out into nature… Just keep supporting that parasympathetic nervous system and that will help and not hurt.

      If you get up this way again let me know and maybe we can enjoy some natural beauty together. I know the easiest way up those bluffs– even my mom made it up high enough to enjoy a breathtaking view.
      Ruth

  10. kris t September 6, 2016 at 3:35 pm Reply

    Tarkonis, do you still have the white lightening in your vision? I was reading WEB MD, on their website, Patient reviews on Cipro, and one patient had the very same thing that you do! I found it interesting, and she could not find anyone to help with the issue either. Kris

  11. Mark Ruff September 21, 2016 at 1:33 pm Reply

    Hi Debbie,

    I wish I knew. I just developed the plantar fasciitis about three weeks ago, and that was the first manifestation of a pretty bad relapse after my symptoms had eased for several months. I now have new orthotics for my shoes and have been doing a lot of stretching on staircases. I’ll probably also have massage done on the feet, as painful as it will be. Tightness in the plantar-fascii region is often linked to tight calf muscles, and mine have been tightening up quite a bit lately.

    I was just talking with a nurse I knew who was also injured from Levaquin along with her daughter, who ruptured several tendons. All of us are hypermobile, although she and her daughter have it much worse: they both suffer from Ehlers-Danlos syndrome, a connective tissue disorder. My theory is that Levaquin hits those us with hyperhobility much harder and makes recovery more challenging.

  12. Tom October 20, 2016 at 5:48 pm Reply

    Ruth- I’ve read a lot of your comments on this site and you (as well as some others) have been really encouraging and helpful. Glad you are still responding to comments even now. I’m newly floxed (two weeks) and realized it quickly after 3 days of 500mg x2, for a possible infection that was not ultimately an infection. Lucky I stopped when I did. I’ve had body wide aches ( seem to be gone now mostly), tendon pain in ankles and now in wrists, and some odd feelings of coldness and nervous system “chills”. Oh, and now insomnia. I have been taking a probiotic and magnesium pills, and just started some vitamin C. The ankle pain has gone and I feel like I can now walk without pain, but we’ll see- I have to admit I’m scared out of my wits for the future.

    • Ruth Young December 23, 2016 at 5:04 am Reply

      Sorry I just saw this now– I have been so busy. I hope you are doing ok and hanging in there. It is my belief that getting floxed is far from rare but being permanently harmed is actually rare. Dr Jay Cohen estimated the actual rate of serious side effects from Cipro to be nearly sixty percent. There are millions of prescriptions for FQ’s written every year. If sixty percent of the people taking it were permanently disabled this scourge would have ended long ago. Most of us heal. Some never realized the cause of their temporary descent into ill health. I did not the first time it happened to me.

      It is not ok that people go through hell but it is allowed to happen because almost all of them make it back out eventually. It is horrific. But just because you find yourself in hell does not mean your road ends there. Mine did not. I know several people in my personal life who healed all the way and never posted about it online. I encourage them to do so but not everyone wants to share how they got sick. There are a lot of healed floxies out there. Keep believing you will be one of them!

  13. Jason October 28, 2016 at 10:16 am Reply

    Posted on the main pages by Michael Teeter, re-posting here for those who want to stay informed and protect themselves:

    Michael Teeter October 26, 2016 at 11:40 am

    Hello everyone,
    I wanted to share a recent experience of a fellow work mate of my fathers. She came over from the UK to CA USA for a business meeting. While she was here in the states she experienced a reaction her face swelled up and broke out she looked like someone beat her with a club. I think she had a hard time breathing. They rushed her in for medical treatment. They thought she was having anaphylactic shock from sea food in a soup she ate. Nope. Guess what the doctors found out? She ate Chicken here in the US and she had an adverse reaction to antibiotics in the meat! So they treated her and she is doing fine.

  14. maddy November 8, 2016 at 10:07 am Reply

    Holy moly. I am just discovering this site, and discovering the possibility that one of my kids might have been floxed. Several years ago, and that she might still be suffering the damages now. She had an ear infection, augmentin did not cure it, back we went, and I am pretty sure, I had the pediatrician copy her whole file, that they gave her levaquin. Do symptoms sometimes not show themselves for quite a while? It was like it snowballed…and kept getting worse. Anxiety slowly rose, then a few full blown panic attacks. Food allergies which got worse and worse. Migraine evolved with those. She had IT band syndrome which is a tightening of a muscle or tendon from lower back down the back of the leg – it was so tight it did not function correctly and it rolled over the exterior of the hip joint – it gave the appearance of almost a hip joint hypermobility but it wasn’t. Weirdest thing to see visually. then spondylosis fracture. intermittent insomnia, not tied to life events, totally random. We have done all kinds of genetic testing. She does not have any issues which stand out as “Ah-ha” SNP’s for anxiety – I actually have more than she does – and I have a calm brain. the anxiety I believe causes elevation in cortisol.

    Ruth, the Verapamil, while I think it is technically classified as a calcium channel blocker, apparently also has some beta blocking characteristics. The thing about beta blockers is yes it blocks the receptors….which causes the body to try to capture the signal, by growing more beta receptors. So when you go off…wow, signal amplification, more anxiety. This is similar to benzo withdrawal. and it doesn’t take long. See article.

    https://www.ncbi.nlm.nih.gov/pubmed/8095251

    We also took Elavil/amitriptyline as first migraine treatment for six months, which is an anti-depressant but also a potent H1 antihistamine. Well, I swear it made all her allergies and intolerances worse when we went off of it. Histamine is one of our basic neurotransmitters. It controls sleep/wake cycle, immune function (which we think of mostly), heart rate, body temp, hunger. Google histamine in the nervous system one of the authors is Haas, for a great article. I think her body grew more histamine receptors. Not sure how long it takes to down regulate them again if that happens at all. When you block receptors and interrupt signals your body just talks louder essentially.

    has anyone found relief from niacinamide for anxiety? a lot of people with cortisol issues find this helpful. Both to sleep and also lower dose just to keep even tempered during day.

    • Ruth Young December 23, 2016 at 4:56 am Reply

      Sorry, I just saw this– I have been so busy. It does sound like your daughter was floxed. I hope she is doing better now.

      I did not notice any withdrawal when I came off he Verapamil, but it can be hard to tell with flox symptoms waxing and waning. I have been off it for a long time now with my blood pressure and heart rate being fine without it. It helped when I needed something to calm down that racing, pounding heartbeat and keep my blood pressure from skyrocketing to unsafe levels. But now even the hypertension I had preflox is gone. Just from taking better care of myself, I guess. It will go up again if I have a relapse, but as soon as the relapse ends everything goes back to normal again.

      I just read about the high dose Niacin and it looks promising from what I saw. It does not affect Gaba-a receptors directly so I think it probably is safe and effective to help floxies with a loss of GABA receptors and people in protracted benzo withdrawal as far as promoting healing of GABA-a receptors and not slowing or preventing that healing.

      But I did not research every possible drug interaction and side effect yet and I have not tried it myself. All I found out so far is that it’s mechanism of action looks promising for helping some of us. Maybe. It has been around for awhile as a treatment for anxiety but only recently have they figured out how it actually works.

  15. Linda Harris December 11, 2016 at 11:44 am Reply

    Hi Ruth. Would you be so kind to call me. I am going to leave my phone number with Kare Possick who appears to live near me. I would really like to talk to you.
    Thanks, Linda Harris

  16. Mary hop December 20, 2016 at 12:37 am Reply

    HI Ruth. You haven’t posted in a while so I am praying that is because you are doing well and are getting on with your life. I am 22 months out from being floxed and mostly recovered. I have posted here because many of my symptoms were the same as yours. I have been feeling pretty good and was thinking out of the woods so to speak and all of a suddenly have very dry mouth, eyes and throat. Freaked that I have developed sjorgrens syndrome. I am praying though that this is just another adverse reaction that will reverse itself in time.just wondering if you or anyone else reading this has had this and if it has gone away?
    Best regards, Mary

    • Ruth Young December 23, 2016 at 4:43 am Reply

      Mary,
      I had a relapse a couple weeks ago– very severe. Prior to the relapse I was 98% healed. In some areas I went back to about 30%. Not everything. I retained muscle mass and my tendons were still ok but I got the psych symptoms back– anxiety, pounding heart, elevated blood pressure, inability to tolerate light, sound or movement and that torture insomnia. It was only during a nap during the day so I didn’t bother with uridine and just got up. I had to miss one day of work because I just did not feel medically stable. After that I felt better but not all the way there– my face would feel numbness or pressure and I could tell the world seemed just a bit too stimulating.

      I got that super laser beam focused brain playing organ one Sunday. I had thought that was gone forever. It is a side effect but a pleasant one. I pulled out every complicated piece of music I know and had a blast with it. But by the following Sunday I felt more relaxed and calm but I also had my normal brain back. I would say my baseline now is that I am slightly sharper cognitively than I was preflox– probably because I take better care of myself now.

      I now feel about 99% healed. After the relapse it felt like certain aspects of my personality had returned. Hard to explain. I just felt more like the old me. Thought I was all the way back, but I guess not.

      I feel like I have a little more resilience now. I think my super stressful job pushed my body to make some more repairs to my autonomic nervous system. Maybe my job, which is the toughest teaching job I have ever had, will actually be the catalyst that pushes me to 100%.

      At about the point out where you are at I suddenly got very dry eyes and had to use Visine all the time. I did not get the dry mouth some people get but my eyes were red all the time. I do not have that issue now. Can’t say for sure what is going on in your body but maybe it will comfort you to know that my body did something similar for a little while and then stopped doing it.
      Ruth

  17. Sola January 9, 2017 at 9:49 am Reply

    Ruth,
    Hi I was hit pretty hard with the psych symptoms after I took a dose of fansidar post cipro. It was with that fansidar intake I noticed some things being off. Our symptoms are alike. I do go to bed when I feel tired easy but find it hard to stay asleep,I also get running RANDOM thoughts,hallucinations during/inbetween sleep,excessive dreaming and an inability to relax. How would you say you have helped your CNS/GABA to heal. I’m almost 5 months post flox. And it’s the psych issues that weigh me down the most. I’m in Nigeria and I’m to travel to Texas in 2 days.

    • Ruth Young January 13, 2017 at 11:07 am Reply

      Sola,
      Sorry I could not get back to you sooner. I did reply one day but somehow it did not post.

      What helped me quite a lot was reading an online review of Cipro by a man who also suffered intense psychological symptoms. He said that it took many, many months but they all went away. I kept reminding myself that although it would take a long time it would all go back to normal. It pretty much has.

      I had one pretty severe relapse per year after which I seemed to get a lot closer. I just had the third one. Prior to it I felt about 98% better. As the relapse hit (it lasted a month) I got worse until I was at about 30% from where I started with psych symptoms, but then I got better. I now feel 100% healed. I don’t think I quite am yet. I think I will see a few more years of minor cycling with that major relapse once per year before I really could be at 100%.

      Healing of GABA receptors takes time and to attempt a quick fix means your symptoms will get more intense. We feel it when receptors are replaced. I think of it as whatever area of my brain or nervous system is being repaired is temporarily out of order. When your body puts back GABA receptors you temporarily have reduced access to the receptors you still have.

      Every time I have done something that could cause my body to put back GABA receptors I got a temporary uptick in symptoms prior to feeling better overall.

      Frequency Specific Microcurrent helps balance parasympathetic and sympathetic nervous systems. I usually feel a mild increase in anxiety afterwards. A floxed friend who tried it during the acute stage got a horrible relapse from it. It may have been too much healing at once. It also causes a lot of detoxing.

      Detoxing is a double edged sword. Your body will feel better without accumulated toxins, of course. But detox too fast, beyond what your liver and kidneys can keep up with, and you will make yourself a lot worse.

      Another thing that helps GABA receptors is exercise. Again, a little is great, but if you do a lot you are going to relapse like there is no tomorrow. For two years every time I hiked at Devil’s Lake I had one to two nights of that torture insomnia two to three nights later.

      You can also give yourself insomnia the same day as you exercise if you go too hard and your body puts out too much cortisol. I had that happen once or twice, but the relapses days later, after any excess stress hormones would have cleared, were undoubtedly GABA receptor repairs. In studies with mice, the more they ran on their little wheels the more GABA receptors they had and the healthier they were. But don’t decide to fix your nervous system fast with a lot of exercise. That is too hard on your adrenal glands and the rapid replacement of a lot of GABA receptors is literally torture.

      Bacopa Monnieri is supposed to help replace GABA receptors in the hippocampus. I never tried it. I do not know if it helps replace them other places as well. My hippocampus returned to normal function on its own, especially after my sleep improved. I never tried Bacopa because it has a lot of contraindications. There are not many supplements shown to upgrade GABA receptors and those that may carry their own risks, plus the risk of worsened symptoms if they work too well. But if you have memory issues, Bacopa might be something to look into– carefully.

      Uridine can bypass the missing GABA receptors for some people. Uridine has its own receptors in the brain. It helped stop that torture insomnia for me most of the time. Lisa had good results with it in general. For me it only helped that one thing and only when it was really bad. You need to have a lot of damage to GABA receptors plus a high number of receptors for uridine in your brain for it to help you with sleep. Take it with DHA fish oil. Something to try, but it will only act as a band aid– it won’t stimulate more healing. I don’t think it will slow it, but it probably does not promote it.

      CalmPRT from Neuroscience helped with my anxiety. However, if your adrenal glands are past being stressed and starting to fail, CalmPRT will make you worse. It blocks cortisol and other stress hormones. That can help prevent adrenal fatigue but you have to know where your adrenals are at before taking it. Some of my friends really like it and others said it made them worse. If you are a musician do not take CalmPRT before a gig. I mean it. Don’t do it.

      L-theanine might help with healing a bit. It blocks gluatamate and increases dopamine and serotonin. It is just what’s in green tea. It helped me a lot, but it just takes the edge off. You have to also spend time working at relaxing– teaching your body that you want the fight or flight mechanism to calm down and rest and digest to function again.

      My dad used to say, “The mind has to tell the body how it is going to be.” That is what I did. When I got anxiety when I did not actually feel anxious about anything I realized it was my damaged nervous system telling me it got damaged. I told it, “Thank you very much but a already know about that.” Same thing when I got fear out of nowhere. It takes time and a lot of mental discipline, but eventually you do learn to relax again and you do quit having intense anxiety and fear for no reason, or if you have them the symptoms are not so bothersome.

      Avoid things that bind to GABA receptors like benzodiazepines and even some supplements. They make you temporarily better but long term worse, in my opinion.

      There really is no way out of this situation but to go through it.

      However, we have neural plasticity. There is no evidence that GABA receptors do not upgrade. They tend not to upgrade to 100% very quickly if there are other issues going on. Might be why people going through Benzo withdrawal recover quicker than floxies from these psychological symptoms. Floxed bodies took a huge hit in terms of lost functional minerals and cellular damage. But those things can heal. Mine did. Support your body like crazy with healthy food, rest and meditation. Positive thinking is key. Dr Whitcomb told me this is a mind game and he was right. There is no quick fix. Time plus supporting your body while believing that you too will heal is really the answer.

      I used the futon in our back room as my safe space for relaxing. While I was there I chose to believe I was safe and would get well. I did not allow myself to worry while there. I pictured it as a safe life raft in the storm of my floxing. If I started to worry while there I made myself get up. Every time I relaxed there I saw it as a vacation from all my fears and worries. I used my imagination a lot, picturing places I wanted to see again when I got well.

      I suppose it helped to be just a little bit goofy and a bit of a nut. But using my imagination helped me to stop freaking out. If you can reduce your own freak out factor you may find that what your body is just doing on its own isn’t that bad. I found that when I calmed down my symptoms became annoying but not debilitating most of the time.

      I wish I could say there is a quick fix, but my advice to you is not to look for one as many floxies have been set back in their healing or at the least have seen their symptoms increase in intensity by trying to do too much too fast.
      Ruth

      • Sola January 15, 2017 at 9:05 am Reply

        Ruth
        Thank you very much for your extensive reply. Very much appreciated. I’m also thinking of undergoing ozone therapy because I’m having severe head pressure and a pulsating tinnitus. I also have the list of symptoms except that I can walk and be active. It’s the scariest thing to be in a body trapped in this state. Would you consider me doing the pqq,idebenone,and mito q?

        • Ruth Young January 15, 2017 at 5:00 pm

          Sola,
          Only you can determine if a supplement might be right for you and even if you make the decision that it might be ok you could still be wrong.

          Unfortunately, doctors are of little help. They do not even know contraindications of the medicines they prescribe much less supplements. All of us, in trying to heal from getting floxed, are part of clinical trials for finding a cure for floxing, whether we want to be or not. Even if you do nothing and just give it time you are testing whether time alone can heal us. It is not a good position for any of us to be in, but since there is no established cure or treatment for getting floxed that is where we are.

          There is not even a medical diagnosis for getting floxed. Doctors do not even acknowledge it happens. We know it does because it happened to us. And we are all walking in unknown territory.

          I would say the supplements you asked about are among the riskiest you could take. If you are able to tolerate them it is possible they could be a powerful healing tool for knocking down oxidative stress and healing damage to mitochondrial DNA– all three are actually able to to target the mitochondria and not many things can do that. Our mitochondria are kind of protected so that it is hard to hurt them– and hard to help them.

          But of course, FQ’s can hurt them. Which is why I rolled the dice and took the targeted antioxidants, hoping I could tolerate them so that they could help me on the cellular level. And I did see healing of my damaged tendons and the horrible debilitating fatigue that would strike without warning stopped happening.

          If you do not have tendon damage or debilitating fatigue, then perhaps risking synthetic supplements is not a good choice– you are risking side effects to treat something you may not even have. Your mitochondria may be just fine. Unless we had expensive testing done none of us really knows the health of our mitochondria. Nor do we know if there are some supplements or medications we absolutely should not take.

          I think if your only symptoms are psychological then the only one of those three that might be worth the risk would be Idebenone. It really helped my anxiety. By a lot. I could function when I took Idebenone. Without it, I felt like I needed to crawl out of my own skin. So if you are tolerating all supplements ok so far and have no new food or chemical sensitivities then maybe Idebenone would be worth a try.

          Most women floxies who have tried it have told me they like it. All the men I know who tried it said it made them feel weird. So maybe there is a hormonal component there that makes it a better choice for women. I get mine from HBC Protocols online. Scroll down to the 50 mg pills. I take two or three per day with food, usually one with each meal. The serotonin boost lasts four hours, so if it makes you feel weird the effect will be short lived. There could be other risks, I just don’t know.

          You need to research it in depth on your own, and then share that with a doctor who does not have his head up his butt and see what he thinks. I can tell you that it helps me, but absolutely no one, not even the best physician in the world, can tell you if it will help you, do nothing for you or hurt you. But I share the info about it here because for me it was a wonderful find– something good to come from getting floxed. With Idebenone I no longer deal with clinical depression– something that plagued me most of my life.

          Idebenone for me is an excellent alternative to Prozac. I weighed the risks and decided Idebenone is ok for my body. You have to do the same and it is a bit of a leap of faith to jump out there and try anything new. I would suggest only adding one supplement at a time and looking at as many websites as possible first for info including all the actual medical research on the supplement that you can find.
          Good luck!
          Ruth

  18. Mary January 15, 2017 at 5:28 pm Reply

    HI Ruth, Thank you for the answer about the dry eyes and mouth. It is comforting to know that you went through it and got better. Right now it is hell. My eyelids stick to my eyeballs when I go to sleep at night and if I open them before seeping some drops into my closed eyes it feels like it is ripping the surface of my eyeball off. I think it did a bit one time because it stayed feeling a bit rough all day. I am going to my acupuncturist for the last 2 weeks but so far not a huge amount of change. I am glad you continue to heal and do well. God bless you for the encouragement you are to all of us.
    Mary

    • Sola January 15, 2017 at 5:41 pm Reply

      Ruth
      Thank you for the reply. I’m just having an anxiety I can’t put a finger on when I’m not occupied my mind just races and it’s affecting my sleep. It’s scary. Did you experience that and is idebenone ok to use before sleep. I’m a male btw. 28 years of age.

      • Ruth Young January 15, 2017 at 6:19 pm Reply

        Sola,
        Idebenone is probably not going to be your cup of tea. I can’t guarantee that, but it seems like a pattern is forming as more people try things I tried and then let me know how it went. All the men did not like Idebenone.

        What seemed to stop that feeling that my mind was racing was magnesium. If your kidneys are not healthy do not supplement magnesium.

        Magnesium threonate actually crosses the blood brain barrier. When I run out of it my nervous system seems more sensitive to stimulation. Taking it again seems to help.

        Take it only in the morning. It is paired with a stimulating metabolite. Again, check out the research on it to guide your decision.
        Ruth

        • Sola January 16, 2017 at 2:10 pm

          Ruth
          Thank you for your reply. I wanted to find out if you could point me to the online article of the man who was floxed with the psychological symptoms an got better. Sorry if I’m bothersome in any way.

  19. Bj January 16, 2017 at 10:46 am Reply

    Did you ever get checked for Lyme disease? It can have false negatives and false positives in the testing but your symptoms sound like Lyme. The meds may have rared the Lyme up to make your symptoms worse.

  20. Kurt January 22, 2017 at 5:32 am Reply

    Hi Ruth,
    Glad to hear you continue to improve.

    I saw you had the sagging skin as one of your symptoms. Did this return to normal for you? How long did it take for the skin to heal and get back to normal? Thanks for any info!!

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