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.

March 2017 Update

I have tried a couple more things since I last posted on floxiehope, so I thought I would share them with you here. I suggest, as always, to do your due diligence before trying anything new.

You may want to look into Frequency Specific Microcurrent or FSM. I found out about it while taking a continuing education class for my physical therapist assistant license. The class was about increasing parasympathetic nervous system function in order to treat chronic pain. After sharing my story with the instructor she suggested I try FSM. She said that it is better than acupuncture while being less invasive and that it can help your body replace lost GABA receptors. It also increases ATP production by 500%. I don’t know about the validity of those claims, but FSM is approved by the FDA for treating chronic pain. Maybe it does so by increasing parasympathetic nervous system function.

One word of caution for floxies: FSM also causes the body to detox rapidly. If your detox pathways are compromised this may not be a safe therapy for you. Also, I suspect it really does help to upgrade GABA receptors because every time I get FSM I experience an uptick in symptoms such as anxiety and burning sensations on my skin followed by improvement in my overall condition after these symptoms subside. I am at three years out, though, so even the uptick in symptoms is barely noticeable. For someone in the early stages there is a strong possibility that their symptoms could temporarily be made much, much more intense by FSM before feeling any benefit. It is my theory, based on stories of people going through Benzodiazepine withdrawal (which is known to be caused by downgraded GABA-a receptors) that when our autonomic nervous system is repairing itself we get an increase in symptoms of dysautonomia and when it is taking a break from healing we get the normal windows that are a hallmark of Benzodiazepine withdrawal. I think this is one possible reason many floxies feel worse before they feel better. If you were not hit hard by the psychological symptoms you will probably not experience that uptick in symptoms from FSM. Supposedly, FSM can help with tendon healing and can be used to treat peripheral neuropathy. My main improvements from it have been with the psych symptoms. There is a protocol for adrenal health, which I tried during my latest relapse with good results.

I also added colostrum from Sovereign Laboratories. Theirs seems to be well absorbed because of the liposomal delivery. Many floxies react to things with a liposomal delivery– some even react to fish oil. If that is you, do not get your colostrum from Sovereign Laboratories. For me, the colostrum stopped me from constantly being sick from kid germs. Colostrum is the first milk baby cows get so it contains antibodies from the mother cow, helps seal a leaky gut and is very nice if you want to work out and build some muscle. If you are lactose intolerant this is not for you, obviously.

I also wanted to honestly report that I did have a very severe relapse lasting about a month in November and December of 2016. My teaching job this year is very stressful and teaching music to elementary students is going to tax anyone’s nervous system. It is loud, stimulating and keeping track of those wiggly little bodies is a lot for even someone with a normal autonomic nervous system. I also was sick with a sinus infection, but chose to ride it out instead of taking antibiotics again. I think it was just a lot for my system to handle.

I had been feeling for awhile (even during the summer) that I just did not have the stamina I needed. Physically yes, but mentally and psychologically I did not. It seemed like stimulation would just build up on me and I would need to go home and rest long before I felt like my body needed rest. I couldn’t work out after school because being in the gym was too stimulating an environment after a day of teaching. After the bad relapse I had (which took me from 98% resolution of symptoms to about 30%) I have noticed an increase in stamina. I now am able to go to the gym after work. I feel like I am handling the stress of teaching a lot more normally. Since the beginning of 2017 I would say I am 99.9999% healed.

I do not work out as hard as I used to. My cardio sessions are short, with only brief bouts of intensity. I do a lot more weights and stretching than I used to do, but I am tolerating both very well. I am gaining strength normally– not to preflox strength yet, but I will get there. I was pretty strong, so it will take time. I work out now because it feels good instead of to punish my body for being fat. Sad that it took getting floxed to make me able to accept my body as it is and treat it well. Crash dieting and marathon exercise sessions at high intensity set me up to get floxed and the crazy thing is– they did not even make me thin! I am losing weight now, but I think it is mainly from pushing probiotics. There is some evidence that obesity can be caused by an imbalance of gut flora. There might be something to that.

I hesitated in providing this update as I have been contemplating taking my story down and distancing myself from the floxie community. I have been under pressure to do this and accused of harming people. Certainly it was never my intent to harm anyone. I believed that it was my responsibility, after getting knocked down, to turn and help others who had been knocked down in the same way. I believed that I could and should attempt to save lives by saying that it is possible to get up again after a quinolone knocks you down. The intense suffering caused by floxing and the fact that suicide ideation is actually a symptom make FQAD a life and death issue. And more are being affected every day.

I spend a lot of my free time trying to talk fellow floxies out of killing themselves. As I do this, I also fend off fellow floxies telling me to shut up and go away. They tell me I am giving false hope. They tell me that treatments that helped me are harming other people. They tell me I am guilty of practicing medicine without a license and harm incurred by anyone trying something I tried is on my hands alone. They say that we must stick to what the FDA recommends and what medical professionals would tell us and that sites like floxie hope are dangerous and full of quackery.

Well, here is the reality my friends. Every single one of us who have been floxed are now part of a medical research study. Even if you opt out of trying anything suggested on floxiehope, you are still part of this clinical research, because you are testing if time alone can heal us. Everything we do or do not do, every symptom we experience, every theory we put together as to what happened to us based on that experience is part of this new body of medical research into how we get floxed and whether floxed bodies can heal.

To tell other floxies to shut up because their theories do not agree with your own is to limit and taint this medical study. We should not stop this study because it is about the only research going on into what causes floxing and what will help us. The medical community is not doing it. They don’t even believe in FQAD and even if they do, where will they get the money to study floxing? From the drug companies? We are it. What we try or do not try and every time we describe what happened to us we contribute. Someday somebody is going to look at the research we collected and it might just lead to a cure. This makes site like floxiehope invaluable.

On the flip side, yes, there is risk. But the fact that we are put in a position of risk is not the fault of fellow floxies who say “such and such helped me” but rather the fault of greedy pharmaceutical companies combined with a corrupt or maybe just inept FDA, plus doctors with woefully inadequate training in pharmacology. The professionals charged with helping and protecting us let us down. Let’s not forget that.

I was told I should warn people about the dangers of taking glutathione if they have amalgam fillings. I am going to do my due diligence and tell you that glutathione is risky, but not just for people with amalgams. I suspect mobilization of mercury is not even the reason people react to glutathione. I have recently found some information pointing to certain gene SNP’s causing issues for people when they take glutathione. The problems are further exacerbated when they try to fix the problem with such simple things as B and C vitamins. The genetics of what is going on there is way beyond what I have time to learn about with my current work schedule, and since it does not affect me, I am just not that interested. But I share it here because I refuse to promote the junk science that says things like NAC (which increases glutathione) and glutathione injections are dangerous for people with amalgam fillings. I have eleven amalgams. I’ve taken NAC and had a glutathione IV. I have read cases of people severely messed up from glutathione who did not have amalgams. There is something else going on there, and being free from amalgam fillings is no guarantee you can tolerate glutathione. (I am quoting Dr. Whitcomb on the junk science thing, so if you disagree with me, take it up with him.)

I also repeat my warning that anything that causes a heavy detox is going to give floxies problems. Our detox pathways are almost always affected, often simply because of decreased parasympathetic nervous system activation. If you were about to be eaten by a bear your body would not be too concerned about detoxing: the bear would get you before the toxins. Go slowly with detoxing. Herx reactions are not fun.

I think if you are desperate enough to try a therapy that has proven to have severe side effects for a large subset of floxies then you need to also get genetic testing and find a doctor who does not have his head up his butt to interpret it for you. The first is expensive and the second is hard to find, but that is the reality.

Although there certainly can be underlying issues complicating a person’s floxing, I do not agree with those who say that FQ toxicity is really heavy metal toxicity, or really this or that virus or genetic condition. I think jumping in trying to treat other things while still in the acute stage of floxing can be dangerous. When a floxie finds out he or she may or may not have another underlying medical issue complicating things it is a difficult situation. But it is not a situation all floxies share. Misdiagnosis of floxies is common, since our symptoms mimic other things. And keeping a level head is imperative!

Many of us are dealing with parasympathetic nervous system dysfunction. If we start to panic we will get worse. A lot worse. I found out, due to my high stress job, that our own stress is way more toxic than any toxin we might be exposed to and is actually harder on our bodies than the most distressing symptoms we go through as our GABA receptors repair themselves. Stressing ourselves out is a sure way to overtax our adrenals, and no one wants adrenal fatigue.

The road to panic can also take us right down the path to suicide. When floxing becomes not just floxing but mercury toxicity, and diseases like MS and Lyme, and toxins everywhere that could prevent healing suddenly it is just too much! The most important thing you can do as a floxie going through the acute stage is to just hang on, just keep breathing for one more minute and one more minute after that. Do everything you can to promote relaxation, a feeling of calm and a belief that you will heal.

Now I will be accused of giving false hope, but I have an answer as to why this is not false hope. Dr. Jay Cohen MD put the rates of severe ADR’s to Cipro much much higher than the 1% or whatever number is listed on the package insert. If he is right, and if every floxie did not heal, then this scourge would have stopped a long time ago. There are literally millions of prescriptions for quinolones written every year. If everyone who suffered an ADR were permanently harmed the FQ’s would all have been pulled from the market a long time ago. If more of us who healed came back and spoke out maybe this would stop. I am at a loss to explain the urging from those in the floxie community that I just shut up and go away. Is that not exactly what the drug companies want us to do?

I have never and never will take a penny for helping other floxies, so I also deny the charge that I am practicing medicine without a license. I will continue to promote a message of hope, because even if a person does have a concurrent medical condition that will have to be dealt with at some point, that can never happen if suicide becomes their answer first. I do maintain that people should find a doctor they can work with. I have three. Dr. Glenn Toth in Waukesha, Dr. John Whitcomb in Brookfield and my GP, Dr. Adam Holt in Milwaukee, Wisconsin. All three are excellent doctors who understand the dangers of quinolones, who stay up to date on modern pharmacology but also study alternative methods and the latest research into the real causes of disease and dysfunction. All three are proof that the medical community can do a lot better than to keep creating more floxies while denying FQAD exists.

I maintain that fluoroquinolones can downgrade GABA-a receptors in patients who are sensitive to quinolones, even though I have been told “my theory” about GABA receptor damage is false and has been causing people harm. It is not just my theory. The fact that quinolones can harm GABA receptors is well documented, because in studies it is always stated that the NSAID in combination with the quinolone increases the quinolone’s effect on GABA receptors by such and such percent. The effect had to be there in the first place for the studies to note that it is increased by NSAID’s.

To experience extensive damage to GABA receptors from a quinolone alone is probably rare. I still maintain it is what happened to me. However, it is not rare to experience this damage from taking Cipro and an NSAID or from being dependent on Benzodiazepines and then taking a fluoroquinolone antibiotic. Just because the way I was damaged is uncommon does not mean that I am not able to help people with similar damage that happened through the unfortunately quite common but very dangerous drug interactions of FQ’s with NSAID’s and/or Benzodiazepines.

Dr. Toth pointed out to me that some people have a genetic make up that allows them to take Cipro with an NSAID without harm to their GABA-a receptors and some, like me, can suffer significant harm to them by taking an FQ alone. Not every floxie has damage to GABA receptors. I know that I did, based on the research showing that FQ’s can cause that type of damage and from the similarity of my symptoms to those taking other drugs known to downgrade GABA receptors. My recovery has followed an almost exact parallel to Benzodiazepine withdrawal, except for the addition of some tendon damage and slightly longer course of healing. Thanks to neural plasticity (the ability of our nervous system to remake itself, to adapt) the prognosis is very good for anyone with downgraded GABA receptors.

However, at Dr. Toth’s urging I have also focused my attention on probiotics and have found improvement in my mood since doing so. Loss of healthy flora can have a negative effect on mental health. So drink your kefir and try to believe that everything is going to be ok! I have been trying kombucha as well with good results. I enjoy this kombucha soda called “Live!” Every time I drink one I feel really happy the next day. It has happened often enough that it cannot be a coincidence. Look for it in the refrigerated section. Keep in mind that increasing probiotics suddenly can cause a die off of unhealthy bacteria resulting in a release of toxins, so start slowly. Your doctor (if he or she is really good) may have recommendations of specific strains of probiotics to treat your specific symptoms. Life Extension offers some probiotic supplements designed to support specific areas of health based on current research with specific types and strains of bacteria.

The psychological symptoms of drugs like Cipro are the most terrifying of all flox symptoms, I think. I am not saying it isn’t terrifying to lose muscle tone overnight and have your tendons start tearing, but the psych symptoms are even worse. You lose yourself. It is like death– as close as you can be to death and still actually be alive. I know what it is like to live with a nervous system no longer equipped to deal with interacting with its environment. I know what it is to lose cognitive function, to lose aspects of your personality, to lose the ability to feel emotions normally, and to lose any ability to relax, to feel joy or to truly live in this world. I went through that. I just existed for awhile.

But I survived and I got back literally everything I lost. I am completely myself again. I did it in my late forties, on the cusp of menopause with eleven amalgam fillings still in my mouth, eating more junk food than is prudent, not eating organic all the time, pushing myself harder physically in the early stages than was probably a good idea and having a very stressful job. Oh, and I also had a significant, long term exposure to lead in my childhood when I helped my family renovate our old house. We lived in a haze of lead paint dust for years. I found out lead can get stored in your bones and cause problems later if you get osteoporosis. Do you see me panicking? No! I am ok. I am living my life and it is wonderful. I am joyful, I laugh a lot, I have a good life. Is my body perfect? No. Is my health perfect? No. Because life on this earth is not perfect!

Life on this earth is like tent camping. When you go tent camping, even if it is really fun, it is always somewhat uncomfortable. It is just not the same as being comfy in your own bed at home. Getting floxed is like that moment tent camping when the lightning is flashing, water is pouring into your tent while the wind threatens to take it down, you are worried a tree could fall on your tent at any moment and you just discovered that a snake had crawled into your sleeping bag with you to keep warm. But it is ok because you never intended to live in a tent forever. You have a warm comfortable home ready for you and one day Jesus will take you there to be with Him forever. Until then, just remember, earthly life is like tent camping and tent camping always sucks at least a little bit! But sometimes it is kind of fun.

If you are still lost and in that hellish post flox place, see my hand reaching to you and hear my voice saying that it will be all right. Don’t give up. You can live again. Your ability to handle stress will return, your ability to sleep normally and to think will return and when it does you will be able to focus on healing whatever else is still going on as a result of getting floxed and it will be ok. Maybe not perfect, but it will be ok.

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

1,441 thoughts on “Ruth’s Story – Cipro Toxicity

  1. Deb September 26, 2017 at 3:39 am Reply

    Dee, Ruth, Tara, Do you all have any suggestions and/or supplements for dizziness?

    • Dee September 26, 2017 at 6:11 am Reply

      Deb, I wish I had a majic pill for dizziness but not for me!! My ears are roaring right now to the point that I cannot sleep or hear myself think! It got a little better yesterday and then hit me super hard all through the night!! It is horrible noise and pulsating in my ears and really giving me balance problems. I can’t take it!!!

  2. Tara September 26, 2017 at 8:19 am Reply

    I’m sorry ladies, I was too afraid to take anything because I was so reactive. I just kind of lived with it. I still have it to a lesser degree if I take my glasses off and try to do too much at one time for longer than a few minutes, but I’m just a few weeks shy of being a year out. It has calmed down considerably, though. I don’t have the intense ringing/pulsating sensation any longer. My mother-in-law takes meclizine and finds that to be helpful for vertigo, but I don’t know if it would be helpful for floxies. I think some of the initial reactions, at least with me, was the attack on histamine in my body. I reacted to everything and had a red, itchy, hive like rash. I never tried an antihistamine, but I know I am a lot more sensitive to things in the environment right now, so I think there is some validity to the histamine part. Google says: “Histamine is an organic nitrogenous compound involved in local immune responses as well as regulating physiological function in the gut and acting as a neurotransmitter for the brain, spinal cord and uterus.” Maybe Benedryl would help? I was just afraid to take anything.

    • Dee September 26, 2017 at 8:42 am Reply

      Tara. Did you have that roaring pulsating sound in your ears that kept you awake and hardly able to think?? It feels like a roaring ocean wave in my ears! Did it go on constantly or did you have good days and bad days. Yesterday my ears felt so much better and then it hit like a sledge hammer last night! Were you even able to sleep with the noise??

      • Tara September 26, 2017 at 1:37 pm Reply

        Yes, it was like a buzz saw. It’s gone now. This too shall pass!

        • Dee September 26, 2017 at 1:50 pm

          Tara. How long did your ears buzz? Was it constant or on and off? Could you even sleep with it?

        • Dee September 26, 2017 at 2:16 pm

          Tara. Please tell me everything you can about your ear stuff. Did it also make you off balance? Did your ears feel plugged? How long did it last? Anything you take help it that you know of? These buzzing ears scare me and debilitate me so much between sleeping and taking my dog for a walk because of balance which I have done for the past few weeks and now can’t! I sure pray this symptom is temporary!!

        • L October 19, 2017 at 3:06 pm

          what did you take for tinnitus. I have tried so many different things and still have it. sometimes it’s very loud. I suspect nerve damage since I had so much nerve damage body wide.

        • Ruth Young October 19, 2017 at 3:33 pm

          L,
          Magnesium, benfotiamine and ALA together are supposed to knock out tinnitus. I did have some moments of zero tinnitus post flox while taking those things together and I did not have zero tinnitus preflox.

          If the tinnitus is from downgraded GABA nothing will help until you get a normal window from that symptom and it stops.

          Methyl B-12 is good for nerves, so maybe it would help.

          I have read ALA can be problematic if you are heavy metal toxic. Maybe– it is a powerful antioxidant. Those saying not to take it if you have amalgam fillings because it can pull the mercury right out of your fillings are full of crap. To be chelated the substance needs to be suspended in liquid. ALA cannot chelate anything right out of your filling.

          It also forms a better bond with mercury than NAC, so of the two it is probably less likely to move heavy metals around. But could it cause a Herx? Most definitely. Anything that causes a floxed body to do some house cleaning can be problematic for us. So go carefully if you try that combo for your tinnitus.

          There are other things people have tried but I can’t remember what they are. I know my husband tried something from Walgreens that someone we know really liked for tinnitus and it did nothing for my husband. So we are all different.
          Ruth

        • Dee October 19, 2017 at 3:46 pm

          Ruth. Anything you can take to help GABA receptors come back online??

        • Ruth Young October 19, 2017 at 4:17 pm

          Dee,
          If you push healing of GABA receptors you will increase your suffering. When they come back online we feel it. Pushing it to happen faster is nothing less than consenting to be tortured. Once the healing pauses your base line will be higher but getting there will be hell.

          Frequency specific microcurrent speeds their healing. Look online for a practitioner near you. It also causes major detox. Do it if you want but I am telling you that although it will cause healing you will suffer a lot in the process. A couple years down the road you may find it to be a useful tool. Early on it can throw you for a loop and the downturn can last months.

          Bacopa Monieri is proven to upgrade them in the hippocampus. It might help if you have memory problems. It interacts with a bunch of stuff and has side effects of its own. Also, no proof it upgrades them anywhere but the hippocampus. It might. But we don’t know.

          Exercise upgrades them. This is proven. Mice who exercised more on their little wheels had way more receptors for GABA than sedentary mice. Could be why exercise often flares us. Again, if you do this to speed healing of GABA receptors expect a relapse before you feel better. I have been pushing this pretty hard and it has been relapsing me. It sucks to go through it. But I feel I am far enough along and fat and flabby besides that I really need to just push through it. In the early stages exercise could cause that severe torture insomnia for me.

          Becoming more active is risky. If you have mitochondrial issues or vitamin and mineral deficiencies you could really harm yourself pushing too hard too soon. Yoga is proven to increase actual levels of GABA, so that might be a good option over cardio and weights right now.

          Caffeine upgrades them a lot. But if your adrenals are already stressed then you are further stressing your body to push healing of receptors that your body is not that worried about right now.

          I think the best thing for GABA receptors in the early stages is time and trust your body. It knows what it is doing. It is putting the receptors back at the pace it can tolerate. Push it to do so faster and you may push yourself right into adrenal fatigue.

          When you get to be a few years out then maybe try those things if you have some remaining signs of GABA receptor loss. But in the early stages you just have to be patient and let your body do it’s thing at its own pace. That is my thought based on my experience and that of others who have tried to push their GABA receptors to come back online quicker.
          Ruth

        • Dee October 19, 2017 at 5:20 pm

          Ruth, thanks for your advice on GABA receptors. I will just try and be patient!! The biggest issue I am dealing with is insomnia. I guess I just have to wait for that to run its own course too!! I can’t take anything as I am scared after the melatonin reaction. My Doc gave me a prescription for a sleeping pill (increase serotonin not GABA) but I am scared to take that too!! I guess time will help insomnia???

        • L October 19, 2017 at 5:24 pm

          I don’t blame you for being scared. I am very anti-pharmaceutical now. But sleeping pills did help me early on when I was getting ZERO sleep.

        • Dee October 20, 2017 at 6:39 am

          L. I don’t blame you for taking the sleeping pills early on in your case!! You had to get some sleep!! I think I get enough sleep to get by. Usually 4-6 hours of broken sleep and then up in middle of night and unable to go back to sleep. I all always wake up with increased anxiety and feeling the “buzz”. My night is over for good then! I am looking forward to waking up calm one day!!!

        • L October 20, 2017 at 9:01 am

          well, yes at least you are getting some sleep. That is good. I was getting zero for the first couple weeks and then only 1 or 2 even with sleeping pills initially because of the gasping-for-breath issue. I actually weaned myself off the pills when I was finally able to get about the amount of sleep that you are getting now. And yes, the anxiety is terrible. 24/7. This too shall pass!

        • Ruth Young October 19, 2017 at 6:15 pm

          Dee,
          Time will help your insomnia. Mine got a lot better with time. And later when you are closer to healing and maybe feel you are on a plateau then you can try some things to stimulate some more gaba receptors. I just think to do it right now would possibly flare you so much that it would not be worth whatever healing you got out of it.
          Ruth

        • Dee October 20, 2017 at 6:32 am

          Ruth. Thanks as always for the info on helping me through this. The insomnia is a battle but of course learning to wait it out and be patient is probably the biggest battle!! I decided not to take the sleeping pills. I am going to try and trust my own body to heal. I know it will probably take awhile but I don’t want to agitate any process with more supplements or pharma drugs!! You might create more confusion for more rapid healing in my thinking??

        • Ruth Young October 20, 2017 at 6:54 am

          Dee,
          I think you are better off without the sleeping pills if you can manage it. Your nervous system needs to actually learn how to sleep again. I think you are better off teaching it to do that, working with what receptors you have now, and giving the healing time.

          I found two things happening over time– I was finding strategies that helped me to sleep (like meditation techniques) and my nervous system was healing itself. My sleep got better over time as both those things were happening.

          I don’t fault anyone who needs to take sleeping pills for awhile, because the insomnia can be brutal and unrelenting. But I have always been able to tolerate getting very small amounts of sleep. So I had that working in my favor. If I got two hours I would be ok. If I got four I was doing great. I am still like that today.

          Diego has been telling me how he gets eight hours straight and I feel distressed that I only got five and not in a row– but then I think about how I feel and realize I am not tired and actually have reserves of energy so that I can do stuff after work, and I realize that I probably don’t need eight hours straight. Diego is a floxie who had a lot of insomnia initially too, so you can feel reassured that he now gets great sleep almost every night. You will get there too– or back to whatever was normal for you preflox.
          Ruth

        • Dee October 20, 2017 at 7:00 am

          Is it possible for me to communicate with Diego about how he helped himself get more sleep or do you know what he did??

        • Ruth Young October 20, 2017 at 7:12 am

          Dee,
          Diego has a story posted on this site– just a few stories back from this one, I think. He doesn’t take supplements. He focuses on nutrition and stress reduction. And he is several years out. I am pretty sure that is all he would tell you– good nutrition and time. But you could ask him how he is doing today and he might find time to respond. He and I talk every day. He is one of my closest floxed friends and has been a huge blessing to me. He’s like the brother I never had.
          Ruth

        • Dee October 20, 2017 at 7:23 am

          Ruth. Glad that Diego helped you through such a tough time in your life!! Yes he sounds like a true blessing to you! I will post on his story. If you speak with him maybe mention that I am sending him a post. Thanks again Ruth!!!!

        • Dee October 20, 2017 at 6:34 am

          Last question Ruth! Did you deal with tinnutus at all??

        • Ruth Young October 20, 2017 at 7:09 am

          Dee,
          It was really bad initially– almost like a roar at times. Scary loud.

          I had had tinnitus preflox but it never interfered with daily activities– I usually noticed it only when it was quiet as I was trying to fall asleep. After I got floxed I could hear it over the car radio. It was distracting to say the least.

          I took ALA, Benfotiamine and magnesium because I read that was good for tinnitus. I was floxed in February and by April I had a zero tinnitus day. None. I plugged my ears and still none. Wow. I didn’t have zero tinnitus preflox.

          I don’t take the ALA and Benfotiamine regularly anymore. I fear the ALA might detox me too much or move heavy metals around. I not only have amalgams I had a serious long term exposure to lead in my preteen/early teen years as we were renovating our house. We lived in lead paint dust and I remember scraping woodwork and the tiny chips flying into my mouth and inhaling them. Lead paint does not come off in big chunks, it comes off in tiny particles and dust. We worked on scraping lead based paint off woodwork all the time for years until all the renovations were done. For me I don’t take things like ALA and NAC constantly because I don’t want to start mobilizing more toxins than my body can deal with at one time. My body may be a little more toxic than I want to think about. But that is just me. You could try that combo and see what happens.

          I stopped the Benfotiamine simply because I am not made of money. Once in awhile I do buy a bottle of it. It is a great form of thiamine, a very important B vitamin. You also may want to try methyl B-12. Some floxies cannot properly utilize B vitamins so you will have to see how you do. It’s not a permanent problem it is just that you have to supplement other things first to get your body to where it can use the B vitamins. Sterling Hill keeps posting on Facebook the order you have to take things in but I still don’t know it– because I was lucky enough to be able to take a whole crap ton of things at once and get better.

          If the problem is downgraded GABA receptors time will take care of it. For me that must have been what was going on. And I am happy to say I still have less tinnitus than I had preflox. It varies and it will still pop up if I am really tired. I think if I get low on GABA or magnesium it shows up. But never loud enough to be a distraction.

          I know it is a horrible symptom but for most people it does go away.
          Ruth

        • Dee October 20, 2017 at 7:19 am

          What dose of ALA did you take and the other Ben pills did you take? I am not sure I want to add much more but may think on it. I am pretty sure mine is from downgraded GABA receptors as the tinnitus came on the next day after my melatonin reaction!! It was crazy! My GABA receptors had a very huge hyper reaction to the melatonin including roaring head noise, terrible anxiety and buzzing and the tinnutus! It was ridiculous and unexpected! Everything had calmed down some but not gone by any means!!!

        • Ruth Young October 20, 2017 at 7:21 am

          Dee,
          I don’t even know how much I took because I just took the recommended dose on the bottles of ALA and Benfotiamine. Sorry!
          Ruth

        • Dee October 22, 2017 at 8:40 am

          Ruth, I read in your story that you took 250 mg of ALA and 150mg of Benfotiamine a day for tinnutus. I am assuming that meant 1 dose per day? Also did you take B vitamins or B complex along with that too?? I didn’t see anything on your story about taking B vitamins???

        • Ruth Young October 22, 2017 at 9:19 am

          Dee,
          I only took methyl B-12, and yes, it was one dose per day of the Benfotiamine and ALA. I have taken a supplement from Life Extension that has B6 in it along with other things and this summer when I took it again it seemed like my toes felt hot and itchy and it seemed like my circulation to my feet felt impaired at times. Just weird feelings. So I stopped it not knowing if the B6 was to blame. It did not affect me like that when I took it during my first year out. So maybe those weird sensations were absolutely nothing or just another strange flox symptom to come and go. But since then I avoid any supplement with B6 in it.
          Ruth

        • Dee October 22, 2017 at 10:47 am

          Ruth. I take a methyl B complex that I started taking a couple of weeks ago and it seems like that is when all my back itching started to become a problem so I was wondering if the B Vit had anything to do with bringing on the itching?? The complex has 2000 mg of Folate in it. I have read that if react to B which of course I never have before itching can be a reaction?? I don’t know how much you know about it but this itching all of a sudden came out of no where 4 months out! Crazy!! I am not taking my B for a few days to see if the itching eases up??!

        • L October 22, 2017 at 11:05 am

          It is crazy how these things come up out of nowhere. A good 4 or 5 months into this I got hives all over my legs and abdomen. Tried different things. Nothing worked. It finally went away on its own. in fact I started out with side effects immediately to my eyes, my feet and my hands. Within afew days, pelvic pressure and pain. Within a week I started having the olfactory nerve damage, gut issues and breathing issues. In another couple weeks the strangling sensation. It kept going like this, with more side effects being layered on til there were around 30. It is infuriating that we know so little about how this stuff operates. I suspect your itching will go away on its own. Could it be nerve damage? Maybe. Could it be from histamine overload? maybe. That’s why trying to address it is so difficult. I had that sensation of bugs crawling on you. That too left on its own.

        • Dee October 22, 2017 at 11:23 am

          L. Yes Ruth said it can be a form of neuropathy! So it could just be that. I don’t know if it is from the B Vit but I thought I would go off for awhile and at least see if it made a difference. I do get just a few “very small” red dots/bumps on my back so maybe it is a type of hives? Is that how yours was? Hopefully like everything else it will pass!! I hope you didn’t get any more symptoms after 4-5 months!! I am hoping these are coming to an end!!

        • Dee October 22, 2017 at 2:21 pm

          L. I know you didn’t really feel a lot better until a year to year in a half out but was there some point when you started “improving”?? I am really having a lot of brain fog and spacey and just am so ready for my head to start clearing some out of this fog bank! Did you have that and did you start to make improvement at some point? How long did your itching and hives last?

        • L October 22, 2017 at 3:29 pm

          Well I felt like I started to have some small improvement within a few weeks of starting IVs, which was a couple months after I was floxed. It’s hard to quantify the amount of improvement I was experiencing because the vision issues, the breathing issues, and the olfactory nerve damage were so overwhelming and I had dropped down weight wise to where I was almost skeletal. But I know the horrific back pain I experienced was one of the first things to go, and that was I think about a month after the IVs.

          As for the brain fog…it’s so hard to recall because mentally/emotionally I was a mess. I was suicidal, paranoid, anxiety-ridden. Had a lot of trouble remembering things and processing things. I cried pretty much nonstop for most of the first year. I felt absolutely physically and mentally tortured. It’s really difficult to describe the horror of it. So any fogginess (which I guess was related to the difficulty processing/remembering) was so overshadowed by the vast darkness of the other mental stuff, it would be hard to say.

          As for the hives, I think they lasted around 1-2 months. I tried all sorts of things to get ride of them, but then they just seemed to go away on their own. I was on so many supplements, it’s possible one or more of those helped but I have no way of knowing.

        • Dee October 22, 2017 at 4:15 pm

          Thanks L. I feel bad for all that you went through but I know you have come out on the other side of it and I am happy to see you mostly recovered now. I can’t imagine what you went through but you made it and I am proud of you for being able to get through so much suffering! I hope my journey will be easier and shorter but know that I admire you for your toughness in getting through such a horrific time!!

        • L October 22, 2017 at 4:52 pm

          Thanks, Dee. I’m glad I made it too! I never thought I would get to this point. I suspect you will be feeling much better in a much shorter period of time, since you appear not to have had the head to toe damage that I did. (I also was given prednisone at the same time which I think exacerbated everything.) I know it’s so so frustrating, because all of the sudden you are dealing with all these things you can’t seem to control. I am hoping within the next few months you are saying “wow, I feel so much better.”

        • Dee October 22, 2017 at 10:49 am

          Ruth. The supplement I take has 10 mg of B6

        • Dee October 22, 2017 at 11:04 am

          Ruth. What did you take the acetylL Carintine for??? Last question. Did you take a certain type of Vit C. I see that the toxicity solution suggests buffered C? I don’t want diarrhea either. Do you suggest a certain brand of Vit C. I do not take it but I think it would help my brain and immunity!

  3. Deb September 26, 2017 at 9:08 am Reply

    Thanks for the support Tara and Dee. Dee I hope the pulsating sound and the imbalance gets better today. Let’s keep on keeping on and be as positive as we can! As Ruth says it’s a mind game. Tara I hope you have a good day too.

    • Dee September 26, 2017 at 9:39 am Reply

      Deb. How bad is your dizziness?? Is it constant or just now and then?? Are you able to do your normal activities or is it really holding you back? Either way I hope it gets better soon. Yes this is a mind game! I cried for the first time this morning and started to lose hope and fall apart. I am just trying to pick up the pieces and hope and pray that “this too shall pass”!! Because my ears felt better yesterday I want to believe this is just a bad cycle!! 🙏🏻

      • Tara September 27, 2017 at 12:20 pm Reply

        Dee- Ear stuff… Since you asked, here is the run of it from the start… Again, I’m much better but here is how things took off for me… Initially, everything started off quietly for me. I was still dizzy from the steroids, but I felt so “dried out” after taking the Cipro and Flagyl. My eyes, throat and sinuses seemed dry. Then my throat felt tight periodically for a few weeks. Then I had this tightness/pain in my right breast that worried me so much that I went for a mammogram and everything was OK. Then one night I was trying to make dinner and all of a sudden all hell broke loose in my body. My right arm started with this numbness, tingling, and then this electrical current feeling. I suddenly felt fatigued and like I was going to pass out. I was then so dizzy. My husband helped me to bed and we were ready to call 911 because I thought I was dying. My heart was doing funky things and then the loud buzzing started and the ear ringing started and then my head felt like it wanted to lift off my shoulders. I spent the night in bed and didn’t go to work the next day. Then I was able to get up for a few days, but still felt “out of it” and the electrical current through my body kept going nonstop. I then started to not be able to handle any food. I also noticed my energy tanking and I was completely breathless from going up and down stairs. It was Christmas time by then so I remember going down to the basement to get my decorations out and I could barely make it up and down the steps where before I would RUN up and down carrying two plastic totes full of decorations. I remember seeing Floxie Hope and started to take the magnesium and NAC right away. I then felt the second significant crash come where I was in bed for 3 days- could not move anything in my body. It was like my brain was telling my arms and legs to move, but they would not move. I was terrified. The red hives started and then everything went haywire. I remember texting my supervisor at the time the message- “I think I was poisoned by this antibiotic. I won’t be in today.” That is exactly how it felt. I felt like someone poured battery acid over every nerve in my body. I literally felt my eyes being poisoned from the back to the front. They were so dry they felt like they were going to be sucked into the back of my head. My ears started to ring nonstop and it was like this weird ringing and buzzing were going on around my head, not necessarily in my head. It was like a million flies swarming me. I also started with all the terrifying sensations that went through my body- feeling extremely hot on my head like it was literally on fire. My ears also felt stuffy. Since I had just had sinus surgery recently, I thought maybe it was from that, but then I knew this had a completely different feel to it. I think my body was so tired and depleted that I actually could sleep, but I would literally jolt out of bed every two hours between the itching, muscle twitching, electrical current sensation, and sheer panic and anxiety over what was happening to me. This went on for months before it settled down. I still get the stuffiness periodically but the ringing has almost stopped completely. My ENT is having me go for a hearing test because most antibiotics can cause some high frequency hearing loss- which they don’t tell you. The IVs helped with the brain-muscle communication issues. After a few of them, I felt like I could walk normally again- from a muscle perspective. It also helped with my energy levels. My nervous system is a whole other story. I can now stand in front of the microwave without feeling the current through my body but I still have trouble with blue lights and my cell phone and TV with activate my nervous system. It’s like a state of celluar toxicity. My system is too activated yet. Again, probably GABA related. At my year post-op appt. I had my ears checked with the scope and all checked out OK. I think the ear ringing has something to do with the nervous system issue and GABA.

  4. Deb September 26, 2017 at 10:03 am Reply

    Dee
    It’s in bed mainly but I noticed it yesterday when I held my head over to dry my hair. It’s not holding me back from normal activities, but I am so scared. I’ve never had vertigo much but it never lasted this long. I couldn’t sleep much last night because of the stress. I will be so glad to say as Tara did above I don’t have that symptom any more. Dee, I have cried so many times about this toxicity. And there’s no allopathic doctor to see about it. It’s just try this or that and see. Before the Levaquin, I could take most any supplement and have no problem. Now I have to be careful. I’m sorry you felt so bad you cried. But it helps me to cry. Don’t lose hope!!! Changes are happening all the time and maybe this is your body healing. I will pray too that this is a bad cycle. I’m so ready for something good to happen instead of these “symptoms”. I did have a good day on Friday when I felt almost normal but then I haven’t felt it since.

    • Dee September 26, 2017 at 10:15 am Reply

      Deb. Thanks for the encouragement. I hope to find the strength to help through this bad time. I am normally a strong lady but this poison just beats you down! You really do have to be mentally strong!!! I am glad your dizziness is manageable!! Hopefully it will remain that way for you! Hope you and I can sleep better soon!

  5. Deb September 26, 2017 at 10:12 am Reply

    Tara,
    Do you think time is what helped you overcome some of your symptoms since you had a hard time taking supplements etc.

  6. Deb September 26, 2017 at 11:54 am Reply

    Dee,
    This link from floxiehope might be help to encourage you.

    https://floxiehope.com/2017/06/09/a-letter-about-how-to-get-through-fluoroquinolone-toxicity/

    • Dee September 26, 2017 at 2:35 pm Reply

      Deb. Thanks for the link with the encouraging messages! I needed that! I am usually pretty upbeat and positive buy having a really bad day😤 I am just really scared and worried today. Thanks for caring!

  7. Tara September 26, 2017 at 1:24 pm Reply

    Dee & Deb,
    I am still playing the guessing game like everyone else in terms of what is helpful or not. I still cry every day, but I think it’s because I was very traumatized by this experience and I have a hard time moving forward from it. I still can’t believe this happened to me. I always had a fear of living in chronic pain and having vision issues and, Good Lord, nobody wants to hear they’ve been poisoned! But, I still manage to do most of the things I need to do- go to work and take care of my children. There are more things that I want to do that I can’t physically do because I don’t have the stamina or am worried about rupturing a tendon yet. I never had to “sit on the sidelines of life” before. I went full force from morning til night. Most of my symptoms are in my face and head and vision-related and it has been such a nightmare because I’m reminded all day of this experience. I keep thinking I’m deformed and I look in the mirror a lot to make sure my head isn’t caving in. See, with me, because I had a complete septorhinoplasty revision and sinus surgery,I worry this medicine did something to mess it up. Everyone says I look “great” but in my mind, I feel totally deformed based on the various sensations that are going on in my face. The eye doctor said it’s like a nerve issue. I feel like my eyes are doing crazy things, but my husband says they look “normal.” A lot of the major symptoms subsided on their own with time over the course of this year. These things now are a “toned down” version of what happened initially and my anxiety is mostly fueled by the unknown and fearing the worst for my future- whether it is warranted or not. I’m still only a year out, but way better than I was at 2,4,6, or 9 months out.

    My anxiety is also fueled by reading other peoples stories. Their reality sometimes becomes my reality. As a rule, I have done much better when I stayed off the sites. I was doing rather well a few months ago and I thought I would return to help others, but in doing so, if I read about someone’s symptoms, I will then seem to get something similar or worry about it happening to me, even if it had never been in my profile before. So, I think a lot of what is happening to me is anxiety-driven right now. This is such a mental game and some days I am stronger than other days. I have a Doctorate Degree in Psychology that I might as well shred most days because this is tougher than anything I could ever imagine dealing with in my life. I am also angry that I can’t just enjoy life. I take a few pills and all of a sudden I have to carefully monitor my diet or something might trigger inflammation or set my nervous system blazing into action… What?!? Truly like being in the twilight zone. It was so bad at one point that when I bent over, my vision totally went out on me- totally blurry- and very scary! It was like having loose cable wires on an old TV! That is better, but the floaters still trigger anxiety for me because I know I didn’t have them before and I don’t know if they will go away and my nervous system isn’t healthy enough to just ignore them quite yet.

    Remember, a lot of people take these medications and then get better without ever knowing what happened to them. We just happen to put the connection together and then our minds in such a fragile state go to all kinds of unnecessary places. Instead of feeling like I am being electrocuted now, I have a dull sensation over my body. The problem is, because this was so traumatic for me, I have no idea what a normal sensation is anymore. I might be back to normal, but I don’t know. My hips hurt today when I walked in to work. I started to freak out, but it didn’t last long. It might have happened without being floxed and I would not have batted an eyelash at it and probably laughed and stated, “Oh, I’m getting old.” Right now, my mind goes to the worst case scenario (“Oh my God, my hips are starting to go; I read a story about someone’s hips going out and so mine are giving out now. OMG, I had steroids and Cipro this past year… my doctor said that steroids are the beginning of the end for people… my hips are doomed.”)- which I suppose is a defense mechanism of some kind.

    I am thinking that I had a similar experience to being floxed 20 years ago. I remember taking an antibiotic, but I can’t seem to recall where I got it and I haven’t taken many in my life prior to this year. I then had these mysterious neurological symptoms and I was in the hospital for a week and had every test imaginable but nothing ever showed up. I was released and the symptoms continued for months afterward and then just went away. In the past twenty years I had some random eye twitching and would get “itchy” when walking fast or trying to exercise- so maybe I was floxed before and this is why I am hit harder this time around??? Who knows. Whatever continued didn’t interfere with my ability to live a normal and active life for the next 20 years. So, I’m hoping this will just take a little longer and then go away.

    The biggest gains for me happened with the IVs (Meyers and Glut). In fact, it seemed to speed up the healing in my nose 10 fold after each IV now that I think about it. I think I am going to try them again. He had said that the IVs will help with the floaters, which I didn’t see at the time, but maybe a few more might. I stopped them when I was feeling better due to the cost at around 6 months out. I had about 7 rounds. They helped the physical symptoms, at least in the short-term, but I have more of the CNS issues, so I’m not sure they helped with that ultimately. I saw a big improvement in mobility after the IVs. In terms of bottled supplements, I can’t say anything really helped at all except the magnesium before bedtime and the sporadic rounds of NAC I did. I also drink a BAI drink every day because I like the way it tastes and for some psychological reason, it seems to be like my traded “coffee” and gives me the start I need. It’s like my reward for showing up to work every day… I also do a whey shake every day. There’s always a question mark about what is helpful and what is not, I guess. Put it this way, I didn’t notice a drastic difference in healing in terms of when I loaded up on supplements versus giving myself periods off of them. If it’s GABA related, which most of mine is, I think, then that is a waiting game.

    • L September 26, 2017 at 2:00 pm Reply

      Which IV did your dr say would help with the floaters? (I have now had over 90 IVs, but even though my floaters are better , I attributed it to the NAC drops I did for a year. Now you got me curious. (and in addition to huge, gauze like floaters I had SO many little black “spots” which I think are just another form. In fact, early on, I remember shuffling into a Costco with friend who was helping me pick up an RX and the white tile floor was literally COVERED in black spots…as were the walls. I was freaked out. IT was like that for months)

      • Tara September 26, 2017 at 5:46 pm Reply

        L,
        I remember you saying about the black specks and I’ve had similar experiences. I was so happy tonight. I went into a grocery store and was able to tolerate the massive lighting assault for 45 minutes. Progress! I am positive my issues are related to autonomic nervous system dysfunction. My eyes were so dry from the lights but I pressed on. I had a slight headache when I left and my head was hot underneath but I seemed to tolerate this trip better than most others this year. There were times when I had to park the cart and leave mid trip. They just remodeled this store so the lights were exceptionally bright. I still couldn’t work there if I had to, but baby steps! The dr. said the high vitamins IVs would help. My floaters came about 4 months post last pill and I woke up with the attack of the crows in my eyes. I was more worried about my legs at that time, though so that’s why I did the IVs. I’m on my second bottle of eye drops. Did you find the floaters seemed to increase at first, maybe as they break up??? I’m finding that there seems like more, but they seem smaller since starting the drops. Either way they are a PITA! They are starting to fade some. Of course not as much as I would like them too!

      • Tara September 27, 2017 at 11:12 am Reply

        L-
        I am one bottle down with the eye drops and on the second bottle. You are right, there is not a lot in those little vials for the price- I expect them to work miracles for how costly they are! Did you find the floaters seemed to increase at first, maybe as they break up??? Also, did you have a lot of facial neuropathy? Did you have the “brain squeeze” sensation? Did those black and darting specks go away in time? Those are equally annoying. I also wanted to know about the injections you did for your knee. A coworker has a tear in her meniscus- not Cipro related- but she is looking into options other than surgery. Did you need surgery also?

        • L September 27, 2017 at 3:24 pm

          I don’t remember an increase in floaters before they broke up, but there may have been. I did not have facial neuropathy…but olfactory nerve damage and auditory nerve damage. (also neuropathy in fingers and toes.)

          Yes, the little black dots are all but gone. An ocassional one or two…but initially there were dozens, maybe even hundreds. If I looked at a light wall, it would look like it was covered in black dots. I remember I kept thinking there were bugs around, because I would also see them in my periphery. I would swat at something and then realize it was the “ant floaters.”

          RE the knee…no surgery. I didn’t want surgery which is why I did the injections. They are called prolozone injections. They help the body heal itself. It is a combination of ozone and procaine. It takes several months to see changes as the body heals itself. (There is also something called prolotherapy which works on the same principle but is not the same thing. I don’t really know much about that.)

        • Tara September 27, 2017 at 5:06 pm

          L,
          You would say that floaters are much better at 2.5 years out though? I think my sinus surgery saved me from the olfactory nerve issues but I notice as my sensation comes back, I am sensitive to perfumes again – but I was before too- so I can’t imagine what you went through! The vision stuff is bad enough! My eyes feel like dancing eyes. When I think about how far I’ve come since the steroid psychosis where my brain flipped out at the slightest thing and I had sensory flooding terribly, I can only hold out hope that this all goes away in time and nothing else new surfaces because of it. My parent’s neighbor took Cipro in February and has had a number of “classic” symptoms including the strangulation feeling you described and the “electrical” zapping in fingers and toes I had. Her son is a doctor and refuses to believe it was the Cipro so he’s going to do all these tests on her when she visits him. The symptoms come and go so it sure seems like it is what it is! A duck is a duck! Quack!

  8. Deb September 26, 2017 at 4:05 pm Reply

    Tara,
    You have made so much progress and you will continue! SInce you have already had glutathione and the IVs you know you can do it. I saw one recovery story where the lady was helped very much by whey protein–I think it was the amino acids. Thanks for all the info.

  9. Deb September 26, 2017 at 4:11 pm Reply

    Tara,
    One more thing–have you tried collagen? I can’t remember.

    Also, on another note, is there a special way to post comments? Mine don’t seem to post up under the person I’m posting to.

    • Tara September 26, 2017 at 5:49 pm Reply

      Yes, I also did real bone broth daily for months and collagen powder. I forget the name of the one I used. I recently brought Dr. Axe powder and the taste is terrible. But, yes, collagen and the GNC protein whey powder have been daily. I noticed that I also couldn’t feel the right side of my back for the longest time and I seem to be regaining sensation again slowly. Yeah!

      • Dee September 26, 2017 at 5:55 pm Reply

        Tara. Could you tell me more about your ears and what symptoms etc you went through and how long you experienced the symptoms. I asked you an earlier question about more details if you get a chance to go back to that post. Much appreciated! D

  10. Deb September 27, 2017 at 4:45 am Reply

    Ruth,
    In all your connections with people with FQ toxicity, do you have any suggestions for how to deal with vertigo, muscle weakness and shakiness from the CNS issues? I’m going to make an appointment with the neurologist today, but if you know some things that have helped others I would appreciate it. I think part of the problem is stressing over all the issues. Thanks. Deb

    • Ruth Young September 27, 2017 at 5:08 am Reply

      Deb,
      Work with a physical therapist trained to help people with vestibular issues. They all have training in that, but some actually specialize in it. I used to work in that field and I am telling you, physical therapists know more than the doctors today and a good one can be a true miracle worker. I could try to describe some techniques I know to help with vertigo and such, and you could try to do them with no one to watch if you were doing it right– but I think your best bet is to go with a professional on this one.
      Ruth

      • Dee September 27, 2017 at 5:18 am Reply

        Deb. Are you spinning or feeling off balance?? How often?

  11. Deb September 27, 2017 at 4:49 am Reply

    Tara,
    Just to make sure–you used Dr. Axe collagen powder? Do you think the bone broth helped? I have made some bone broth and drank a little but I will continue to make and drink it. Do you think the whey powder is helping?

    I would think that the collagen would be helping your eyes also.

    • Tara September 27, 2017 at 7:33 am Reply

      Hi Deb,
      I bought bone broth at a local natural food emporium. It was pricey, but a group of women make it from scratch from all organic products so I know it is good quality. I didn’t care how much it cost at the time. I used it for the purpose of healing my gut from multiple rounds of antibiotics. I likely had leaky gut issues and then after the first rounds of antibiotics and steroids, I developed diverticulitis- which I never had before- which lead to the Cipro/Flagyl disaster. I used the bone broth for about 7 months. I also started using neocell super collagen powder at maybe 4 or 5 months out. You can get it on Amazon. I bought mine at my doctor’s office and it cost $15, but I think it’s cheaper online. It certainly helped my skin and nails grow! 🙂 I switched to the Dr. Axe powder because of the collagen and bone broth properties.

      • Dee September 27, 2017 at 7:59 am Reply

        Hi Tara. I hate to keep bugging you but could you tell me more about your experience with your ears. Did it affect your balance? Did they feel plugged up? How long did the ear noise last? How long did you have it before it started to go away?

        • Tara September 27, 2017 at 12:47 pm

          Hi Dee,
          No problem. I can relate. It is terrifying at the beginning because it is so foreign to us. I answered you a few lines up, but with the ears- Yes, they started out ringing and stayed that way for a few months. I am happy that I am now forgetting all the beginning symptoms. 🙂 I think my balance is affected on multiple levels, so it could partly be from the ears, but I think it’s a multisystemic issue since my issues are mostly mediated through my visual system- I am a very visual person. If I close my eyes I can walk normally without any issue. When I open them and take off the glasses, my right side of my body feels weaker and I start to get dizzy. I have this weird thing where I have a nerve on the back of my neck that gets activated very easily when I am overstimulated, so I don’t know how much that contributes to this situation. I did have chiropractic care for a few months- lovely people, but it might have aggravated things too. Now, to put this in perspective, I am fully functional (Thank God!). If you would see me walking at work or in the grocery store, you wouldn’t think anything is wrong, but I know I’m not as strong and my nervous system is offline. I thought I had a stroke for several months. It’s slowly coming around again. I had gotten a massage a few months ago and I was in a state of panic on the table because I could not feel her massaging the right side of my body the same way I could feel her massaging the left side. Plus, when I got up from the table, I was so dizzy I fell over and I was literally seeing stars and other weird visual stuff- again, probably GABA related. I just rubbed my lower back and can feel the sensation is getting stronger- yeah! I will still feel the “stuffiness” in my ears occasionally, especially if I am at a higher altitude, but it is way better at a year than at 2 months when it felt like they were stuffed with the whole box of Kleenex. I also had other weird sensations in my ears but that has since stopped also. There wasn’t anything that I did specifically for the dizziness or ears, other than get the prism glasses. My issues have shifted from the dizziness to where my brain feels like it is wringing itself out and like it is in a vice- not the same pressure as it was initially with the tight band around my head for months, but still pressure and I get these sensations like someone is stabbing me in the brain with an ice pick. I keep thinking maybe it’s getting this junk out of the cells or else that is the GABA receptors trying to come back on line. It might be nerve related because as my nose heals from surgery, it’s the same sensation when the nerves start to come back on line. It feels like a little spark. The best way I can describe the head feeling is like someone “turned out all the lights” in there and slowly the lights are coming back one by one.

        • Deb September 28, 2017 at 5:13 am

          Tara,
          You are an inspiration to all of us–how you have plowed through many Cipro health related issues and are getting better! Thanks for your sharing your battle and your support!

  12. Deb September 27, 2017 at 5:48 am Reply

    Dee,
    Right now my vertigo is when I turn over in bed. I have a fair amount of head pressure and a little headache sometimes. I seem to be tired in general today (probably somewhat from lack of sleep here lately though I did sleep better last night). I have the muscle weakness and shaking. I have had the shaking and muscle weakness since this whole thing started. It seems to be worse when I am stressed which I am now. I am working diligently on changing my thinking into more positive and optimistic thoughts. My family is being so supportive which really helps. I am leaning really hard into my faith too. I continue to pray that this is just a bad cycle for you. I hang on to what Lisa says about HOPE – Hold on Pain Ends!!!

    • Dee September 27, 2017 at 7:20 am Reply

      Deb. I am going to say it is a good thing if the vertigo is limited to turning over in bed! If it isn’t bothering you when you are standing and walking then it doesn’t seem to be hitting your balance system!!! You can carry on and that is good! I have read that a lot of floxies get dizziness and balance issues. I have also read that a lot of floxies get better with dizziness and balance with TIME. Neither one of us want to hear that but hopefully all of this will lift as we move forward. Let’s keep praying for our healing!

      • Tara September 27, 2017 at 9:59 am Reply

        Hi Dee and Deb,
        In terms of symptoms, I was going to write everything down, but I decided against it because I remember being in the early stages and losing hope quickly when I heard of all the symptoms people had so I’m going to save you from that and just say that I had just about anything you can imagine happening or that everyone else experienced according to the site and then some this year. I do think there is cycling of symptoms at various intervals. All three prongs of my nervous system were hit hard. I had the loud and obnoxious dizziness at the onset and difficulty with my gait. I would walk into the wall and I was not grounded at all. It was not until month 5 or 6 that everything bottomed out and I could barely get out of bed anymore without having to return. I could barely work anymore. In terms of all the doctors I saw, the neurovision specialist was the only one who was helpful and able to identify the neurological issues. Clearly, I have 4th cranial nerve palsy, but every other doctor had told me that my ocular eye movements were perfect, my vision was “OK” and my regular eye doctor told me I wouldn’t need readers until I was in my 60s at the very least- Ha! I kept saying, “But, I can’t see!” I could pass an individual eye test at that time, but because my eyes were not working together with my brain, I couldn’t pass any of the neurovisual tests. Cipro is known to cause double vision and all these wonky vision issues, but not one other doctor- except my integrative doctor- would acknowledge this and kept looking for all these other causes since I was now “41” and of course the body starts to fall apart at 40 according to the doctors… well, not all at once over night from head to toe! Without my prism glasses on, I would not be able to get up out of bed for any real length of time without being dizzy or having a lot of head pressure, which then affects my vision. I take the glasses off periodically to test things out and I’m up to about 15 minutes from 0 before symptoms set in again. I then have to take the time to allow my brain time to readjust to the glasses. Had it not been for this site and knowing what I was experiencing and that it will likely get better and eventually go away with time, I probably would have gone to an ER daily every day this year- but the important thing is I survived this year (I’m still in awe about that mere fact when I think about what I personally experienced and that NOTHING showed up on a test- and I had them all) and continue to just put one foot in front of the other and go about my day. The fact that the symptoms cycle makes me think there is still some activating force happening within me or else the protective forces that normally block these sensations were temporarily disrupted in some fashion. I keep holding on to the faith that most people recover from the major stuff with a slow and steady pace over two years. I’m starting to have better days. I think I got hit hard because of all the other potent medications and their own effects on my body- it was like the perfect storm. I know two local ladies in their 70s who had the “ADR” from Cipro around the same time as I did and they are doing much better and are pretty active again. They both had the dizziness for many months and found it difficult to get out of bed. They are retired, so they could rest most of the time, which I’m sure helped them in the long run. The one has a son who is a doctor and told her it was likely a B12 deficiency! Ha! Even when my mom told her about me and she showed him the info. on Cipro, he still said it’s so rare that it is unlikely to happen and it was probably something else!

        • Deb September 28, 2017 at 4:53 am

          Hi Tara,
          When did the head pressure start feeling better? It seems it and the shakiness are worse in the mornings. These symptoms are scary and cause even more stress. Did you find a supplement to help the head pressure? Thanks much. Deb

        • Deb September 28, 2017 at 12:30 pm

          Tara,
          How in the world did you survive all the symptoms and the mental anguish? And I wonder why these drugs are still on the market?

      • Deb September 28, 2017 at 4:57 am Reply

        Hi Dee,
        I have a good bit of head pressure during the day and shakiness which are scary. I think any symptoms we have are scary. Hope you had a better night last night!

        • Tara September 28, 2017 at 6:15 am

          The steady shakiness went away about month 5 or 6 for me. If I am really taxing my nervous system, I will still get shaky, but it doesn’t happen when I’m still anymore. I was really scared with it at first because my hands would just tremor and I remember watching a video clip of a lady who said she still had it at 7 years out and of course your mind goes to the worst- so stay off the internet! Shortly after watching that clip, I developed the same thing with the hands and then I read a story about someone’s right eye losing vision and I developed the same thing. When you read the worst case scenarios, those are the ones that play in your head- so from someone who is at the year mark, looking back I would say not to look at any internet stories! This really hurt me mentally because I couldn’t separate my own experience from what happened to others. I hope mine comes back in time like his seemed to do… I still have the head pressure but it is less than what it was to start out with and I don’t notice it when I have my prism glasses on. It is more of a dull achy feeling when the glasses are on. I would imagine it is nerve related since the prism glasses seem to calm my nerves down. When I take my glasses off, within a few seconds, the pressure will return and it feels like “pop rocks” at this point in time. Yes, it is scary! Prior to the string of medications I had taken, I had never had any of these symptoms in 40 years, but then I never took any other medications. I think from what I’ve read, the pressure usually abates between month 18-24 for a lot of people. Next month will be a year for me and my symptoms are cycling less with more periods of relief in between. Yesterday my hands and feet felt OK, but today they feel numb and tingly again. I read an article in the paper last night about ladies who formed a support group for cancer survivors and they were talking about some of the long-term side-effects that take awhile to go away after chemo and since these drugs are more in line with those drugs than antibiotics, I think it really is just time and immune support to give your body what it needs to heal itself. My integrative doctor had prescribed something called Neurochondria. It was $75.00 a bottle. I took it because it has all the recommended things in it- glutathione, B12, Alpha lipoic acid, etc. It made me more reactive. I had about 5 left in the bottle so I took one this morning and I can feel my nerves being more activated today than usual, so it must be the pill I took. This lets me know my system is still very sensitive. It’s a lot better than it was, but at a year out, I still have to be careful with any type of stimulant. After leaving my first integrative appointment at 2 months post Cipro, I walked out of there with an arm full of supplements and a $600.00 bill. I don’t think anything in that basket really helped. The IVs were about $300.00 per session, but I think those helped the most because they strengthened my immune system. There were often cancer patients getting the IVs with me and one lady said it had cured her of her cancer for many years before she had a recurrence. I would put my stock in something that is more direct, like an IV, than a bottle of supplements that are mostly fillers. That’s just my opinion, though.

        • Deb September 28, 2017 at 6:55 am

          Tara,
          I’m a little concerned about the glutathione IV since some people have never recovered from it. I took liposomal glutathione before this started and I was fine with it and any other supplement I took but I’m more reactive now. I had an anxiety reaction twice from a low dose iron. I will have to do supplements or IVs very slowly and carefully. I am discouraged since I was better at six weeks out–I didn’t have the vertigo and head pressure then. I do seem to feel less shaky later in the day. Did you notice that and did you try acupuncture?

          Thanks again for all your knowledge and support and I am glad you are feeling better!

        • Dee September 28, 2017 at 11:15 am

          Tara, Deb, Helena. Tara thank you for all of your feedback and info on your recovery and especially the ear stuff for me. It gave me hope that there is light at the end of the tunnel! I have to admit that some of your story is overwhelming on how much you went through for 5-6 months before you started to make improvement and I do pray along with Helena and Deb as we are all 3 months out that we recover sooner than later! But we will all take our own journey as you know. I saw my integrative Doc yesterday and he confirmed what Ruth actually said about the melatonin reaction. He said because my gaba receptors are damaged that when I took the melatonin they were in no shape to “receive” it so to speak so they punched back at me with a hyper reaction! Of course that set my recovery back some but I hope not too much. My Doc said it could take up to 8 weeks for the receptors to calm down and heal. I of course hope it happens sooner than that!!! Deb. He also told me there were 3 ways to get glutathione. The IV, injections 3 x a week and finally acetyl glutathione pills. We discussed it and I told him my nervous system is a wreak right now and in no way want to risk a rapid detox or damage from a IV treatment. He suggested the injections and I told him I want to take the pills for awhile until my CNS calms down and then I would consider the injections. He agreed that would be a good course to take! So for now just the pills! I hope that may help you in your decision as I know you are really sensitive right now and reacting to things! Slow and steady hopefully we pay off for us! I think we need to be gentle with ourselves and especially our nervous system! How are you sleeping at night?? I have terrible insomnia and just sleep in chunks of time. It is a good night for me if I get 6 hours of sleep broken up in chunks!! And of course I can’t take anything to relax me!! How is your dizziness doing?

        • Dee September 28, 2017 at 11:43 am

          Deb. I also meant to mention that I wake up with a early morning jolt with lots of anxiety and by the afternoon and end of day it tends to settle down enough that I am not jittery inside. My mornings are really bad too! At least it calms down some during the day! Shall I say “baby steps”!!!

        • Tara September 28, 2017 at 10:33 am

          Deb,
          I can understand your reservation, Deb. It’s hard to know what to do. There’s no playbook. I was so desperate because I felt my body deteriorating quickly and I didn’t even think about a reaction from the IVs. I just did them. I was very tired afterward, and I was so reactive that I might have reacted to them, but I also know that they seemed to help my musculoskeletal functioning greatly. I was not able to get out of bed for three solid days because my brain and arms and legs seemed “shut off” from each other and not in sync with one another. My brain and eyes are still that way, but improving very slowly. I had been in touch with a local floxie who advocated strongly for the IVs. Now, he took Levaquin and had more musculoskeletal issues than CNS.

          Don’t be surprised if you see an uptick in symptoms over the next few months. Some will leave and others will come. Your energy levels will wax and wane. This is why it is such a mental game. You will feel improvement and then all of a sudden something else will happen that you know is new for your body and you will feel deflated and discouraged again. It’s a cycle and a process. Like I said, stay off the internet and try not to read articles about FQ toxicity- you will be able to handle this better without the distractions. The articles are wonderful tools to get the word out about FQ to the general public, but not so easy to read when you are on the receiving end of it. When I logged on today, my eyes went right to the new article posted at the side and I thought, “Oh, another recovery story- fantastic!” After reading the title, I immediately felt deflated again and worried about my own future. I remember being at the beginning of this process and feeling totally helpless and hopeless after reading some of the worst case scenarios. I started thinking the worst about my vision and that this is permanent, based on the article today that was not even related to vision- see it’s hard to separate yourself from someone else when you are in such a vulnerable state. I just have to hear certain buzz words associated with this and I start to panic. Our nervous systems are designed to protect us, but when they are malfunctioning, they don’t do such a hot job of naturally doing this for us. Instead, they rev up the worst. I’d imagine it’s the same with any medical issue people have, where you start to compare yourselves to others who are experiencing the same thing. I immediately started to think the worst about my eyes when this morning I felt things were improving and I even had a decaf. iced coffee from Dunkin Donuts and was proud of the fact that I could celebrate with my coworkers again when they did a coffee run AND not react to it. I was a little shaky, but WAAAAY better than months ago when I would shake from even the sight of coffee. I even thought that the floaters seemed less in the lighting of the staff meeting room today. Since reading that article a few minutes ago, my eyes have been funky, the floaters were better this morning and now they returned in full force- I know it’s autonomic nervous system related, so as long as I control the external stimuli, I can better control my automatic thoughts, and better recover my long-term autonomic nervous system functioning again. For me, I know I’ll probably need a whole year of being symptom free before I can feel confident to say I’ve healed. I’m probably at like 50% with my vision and nervous system issues (less dry eye and less pain but still a lot of other vision-related difficulties, head pressure, some subtle neuropathy in hands and feet that comes and goes) and 75% recovered with the other issues I had right now at a year out.

          I did not try acupuncture. I did do 3 or 4 sessions of PEMF on my hands and feet, 7 IVs, a bunch of different supplements, chiropractic care, 3 massages, and a lot of praying… 🙂

        • Deb September 28, 2017 at 12:23 pm

          Dee,
          Good to hear from you. Everything is about the same with the vertigo and head pressure. I am still very concerned about it. I’m not as tired today. My sleep is okay. If I get six hours of broken sleep I’m happy. I have gotten none or 1-2 hours several times over the last three months. When I was on the Levaquin and Prednisone I got no sleep at all. I got a prescription for 6.5 mg. Ambien and I did fine with that. I took it for 13 nights. One night I would take it and then I wouldn’t the next night. I would sleep and relax when I took it but I wouldn’t sleep at all when I didn’t take it. I took it for a few nights in the same way after I finished the “poisonous’ prescriptions. I don’t take it anymore. But that doesn’t mean another floxie would do okay. You may be going through a detox with the glutathione pills and the MitoQ–you think? I had a reaction from turmeric but I read where it can speed up glutathione production. I guess I need to keep trying something even though I get a reaction, but it is very hard. I was hoping my system would calm down and it would be easier to take something. I will say it is calmer but it is still reactive right now. Are you able to drive? How did you get your spirits up?

        • Dee September 28, 2017 at 12:57 pm

          Deb. My spirits are not always up! Some days I am totally bummed and a wreak especially when my symptoms are bad and other days I feel a little better and my spirits improve! It is a total roller coaster and everyday is a major struggle! I just do the best I can! What kind of reaction did you have to Tumeric?? Pill form and how much did you take?? I wouldn’t think Tumeric should bother you but nothing surprises me!!! I can drive s short distance on good days. If I have to go further my husband will drive me!

        • Deb September 28, 2017 at 1:52 pm

          Dee,
          I had an anxiety reaction for a day or two, but I had been taking it the week before. Go figure. I took the 450 mg. capsule. Glad to hear you can drive some. How did you find an integrative doctor that treats FQ toxicity? I haven’t seen one except Progressive Medical and they are very expensive. I think floxies like them, but they don’t always get the best reviews.

        • Dee September 28, 2017 at 2:23 pm

          Deb. I am surprised the Tumeric caused that reaction but sounds like you had a similar reaction like it did to melatonin. How long were you anxious for after the Tumeric? You might try ginger/Tumeric tea made from fresh ginger and Tumeric and see if that helps calm you?? My integrative Doc believe it or not has never treated a severe FQ patient!! He is just a brilliant Doctor! He used to be head of internal medicine at Standford and now has his own practice in the Central Valley of CA. Doctors from all over who are stumped will call him for answers! He has high profile patients, politicians pro athletes that fly in to see him. He is one of the most brilliant Doc’s in the country “seriously”. He is my second Doc out of town. My Doc in my hometown prescribed me the Cipro!!! This other Doc said he had not prescribed a FC in 9 years! He did his homework!!

  13. helena September 27, 2017 at 9:10 am Reply

    ruth hi.. i know ive asked about twitching.. and i feel like the twitching has gotten a little better but now i feel like i have tingling all over my body from head to toe.. know anything i could do or take any supplements? or do i have to just ride this out.. its been three months now and im looking to get better. sigh its still a struggle 😦

    • helena September 27, 2017 at 2:11 pm Reply

      forgot to put sometimes it feels like a crawling sensation…. ….

      • Ruth Young September 27, 2017 at 2:39 pm Reply

        Helena,
        I had the crawling sensation. It completely went away.
        Ruth

        • helena September 27, 2017 at 3:05 pm

          how long did it last for you? its been about a month and im praying it will go away soon. i know everyone is different but im just so curious.

        • Ruth Young September 27, 2017 at 3:25 pm

          Helena,
          My weird tingling and crawling sensations and a bunch of other ones that are very hard to describe– one felt like water being poured on my legs– were all sporadic, but definitely were happening the most in the early months. I just can’t remember exact time lines anymore and it is hard because stuff you think was gone can pop up a year later! But overall I would say all those weird sensations happened the most in the first six months.
          Ruth

    • Ruth Young September 27, 2017 at 2:34 pm Reply

      Helena,
      You probably just have to ride it out. Weird sensations like that freak us out because we know that permanent neuropathy has been associated with fluoroquinolones. But remember, just because a symptom is happening does not mean it is permanent. What you are describing could definitely be related to a nervous system that is hyperstimulated– something FQ’s also do but which quite often does reverse over time.
      Ruth

      • helena September 27, 2017 at 3:08 pm Reply

        the tingling does come and go. Its not always in the same place as it jumps from one place to another. Im three months into this and im praying that this will all disappear with time. did you have the same systems as well.. the tingling? if you did. did yours go away with time? i know time is crucial for us. thanks you answering and for always being positive!

        • Tara September 27, 2017 at 5:12 pm

          Helena,
          I had all these things too and most body things are gone at this point. I had delicate facial surgery right before Cipro so I still have some weird sensations in my face that come and go and weird brain sensations but I think they take the longest to go away from what I read. At a year out I totally agree with Ruth about a hypersensitive nervous system. I couldn’t use a cell phone or stand in front of a microwave for months without feeling like I was getting electrocuted. I can feel my nervous system getting stronger each day and after each “rough period.” I recently had a nerve conduction test and that set me back for two weeks because of how sensitive my nerves are, but I feel stronger two weeks out. Hang on there because it’s early in the game for you.

  14. Tara September 28, 2017 at 6:41 am Reply

    All- (Deb, Helena, and Dee)
    This is the quote I keep on a sticky note on my desk that helps me to get through the mental part of this, which is often harder to deal with than the physical aspect of it… “Maybe you’ve been assigned this mountain to show others it can be moved!” It will take time, mental strength, fortitude, and stamina, but you will make it to the other side eventually! It might take awhile and there will be peaks and valleys, low times, and high times, dark thoughts that you might have never had before will creep in, but “this all too shall pass…” As my healing advances, I am forgetting more and more about the beginning stages and I never thought this would be possible even weeks ago. I reached out to Ruth for reassurance over the weekend because I had a rough week (still think it was related to the nerve conduction test I had revving up my nervous system again) and she said gave me the reassurance that it will be OK and that she has always emerged stronger from a down cycle and that is exactly what happened to me. I taxed my nervous system and it forced it to work again- it was “ugly” for about two weeks and took me back to square one in some respects- but I feel mentally and physically stronger this week than ever… this could go back and forth still, but I see improvement… and you will too.

    • Deb September 28, 2017 at 6:59 am Reply

      Tara,
      Thanks–I really needed to hear that!!

  15. Tara September 28, 2017 at 12:55 pm Reply

    Dee,
    It sounds like you have a good resource with the doctor you found. Ruth has also been a blessing. I read her story and immediately felt connected to her for being a calming presence and I remember saying, “Yes, I have that too!” The fact that she is healed for the most part means she knows her stuff. My integrative doctor encouraged me to do the IVs, but it makes sense with the nervous system and I’m hoping it was not too quick for me at the time. Because the issues are so multisystemic, and I was hurt from head to toe, it is so difficult to know what to focus on and you are so “shell-shocked” and out of it to begin with that we just go into panic mode. I didn’t have one supplement in my house beforehand and then I looked for any quick fix that would help to put me back together again or try to reverse the storm going through my body. It sounds like you are being careful, and thoughtful, and that is good. The IVs helped me to walk again, but may have prolonged the CNS issues. It was probably an even trade off of some sort. I was really beaten down though- I had it with the flagyl, which is toxic by itself- and I couldn’t even stand in front of a microwave because the current was too much! I had 0 protective factors left! My brain probably looks like it is full of little bent tin cans! I think it is wise to not rush into a lot of supplements. I am actually on a hiatus from most of them really and I think I’m just going to take the natural approach, which is basically just the prism glass at this point in time. I think your best bet is to rest and take care of yourself. I didn’t have that luxury with raising children and having the job with our healthcare. Plus, I needed to continue earning money to pay for my “experimental” treatments. I had not heard 8 weeks for GABA receptors… I heard 18 months. I do think magnesium is helpful, though. I take it at bedtime and it helps me to sleep better.

    • Dee September 28, 2017 at 1:05 pm Reply

      Tara. I hope it isn’t 18 months for Gaba receptors to heal! It can’t be as many floxies including you have had great healing and recovery in a few months!
      Ruth- do you have any input on Gaba Receptors healing?? I also think my Doc might have meant for my reaction to the melatonin to calm down??

      • Ruth Young September 28, 2017 at 5:44 pm Reply

        At three and a half years out I still get occasional symptoms that remind me I do not yet have a full complement of GABA receptors. I had shortness of breath over the weekend and again on Monday– a feeling of air hunger, and increased anxiety. I didn’t even realize it was that bad until it suddenly left and I had an amazing feeling of relief– of a weight lifting. I thought when it happened on the weekend it was because I used a different cleanser on my bathtub– I thought maybe I reacted to it. Now I realize it was unrelated because I had the same symptoms on and off for the next few days interspersed with windows of complete normalcy– definitely a hallmark of GABA receptors healing. Taking a walk during my lunch break in the sunshine, just enjoying the warmth of the sun, made the anxiety break and after that I no longer had that feeling of constriction in my chest that haf been causing me shortness of breath.

        I also sometimes still get that burning sensation on my arms or other parts of my body, though not as intense. I can still get that torture insomnia but it is a lot less intense and uridine stops it.

        Most of the time I feel completely normal — really quite good. I find myself being surprised at that quite a lot, because I had grown so used to weird sensations and anxiety happening without warning.

        But I would definitely say my nervous system is not entirely balanced yet. I can say that I am ok the majority of the time and that even when I am uncomfortable it usually (except for this weekend) is not too bad and easily ignored. But I still helped set up a fireworks show in ninety degree heat, swam in Lake Michigan in sixty degree water and taught on Monday in a room with no air conditioning. The relapse or whatever it was didn’t stop me. Maybe the heat is actually what brought it on. Hard to say.

        So I do think it can take a significantly longer amount of time for those receptors to replace themselves than many people would believe. But instead of feeling depressed about that it gives me hope because I know two things: I know my nervous system can repair itself due to neural plasticity. I also know it wants to repair itself because it is designed to function in a balanced way. Whenever I recognize one of my symptoms as being characteristic of Benzo withdrawal I feel ok about that symptom because I believe my body can and will eliminate that symptom entirely– eventually. The better I win that mind game Dr Whitcomb talks about the quicker my body will be able to improve my parasympathetic functioning.

    • Ruth Young September 28, 2017 at 5:27 pm Reply

      If you were suffering from protracted Benzo withdrawal eight weeks would be a very common time line for recovery– though some do take much longer– even years– most recover in a matter of to months. The reason is that Benzos cause downgrading of receptors over time by a natural process– your body is tricked into thinking it has too much GABA so it pulls back some receptors.

      The damage to GABA receptors from FQ’s is different. Cipro, like all FQ’s, is a GABA antagonist. There is no way FQ’s are downgrading GABA receptors in the same way Benzos do it. The latest article I read seemed to suggest it is mitochondrial damage. That’s why it takes longer to heal.

      I still think the damage does get repaired. Our nervous systems want to be balanced. They can produce new receptors for GABA. They have to be able to because in studies mice who exercised had more GABA receptors than sedentary mice. So we can make new receptors in response to various things– not just exercise but the very fact that our body cannot function well without enough receptors for GABA. We will adapt. But it will likely take longer than recovering from straight Benzo withdrawal.

      • Dee September 28, 2017 at 5:39 pm Reply

        Ruth. Thanks for your answer. Hopefully 6 months might be a reasonable time to repair a lot of gaba??? 🙏🏻wishful thinking! Is there anything you can do to promote healing oh GABA receptors? One more question. Do you know the theory behind why FQ poisoning caused lack of appetite? I have lost almost 40 lbs in 3 months! I have to force feed myself! I try to have fruit and smoothies at least but getting meat and veggies down the hatch is a challenge. It worries me a lot but I’m just not hungry! Haven’t been for 3 months! I sure hope my appetite improves soon!!!

        • Ruth Young September 28, 2017 at 6:02 pm

          Dee,
          I think within five to six months you may find that symptoms of GABA receptor repair are a lot less intrusive most of the time. (There can still be some intense but temporary downturns though.) For me it was a difference between being in an unendurable hell to realizing I was uncomfortable but not really being incapacitated in any way. I got my life back to a certain extent prior to the six month mark. But to finally really have a completely repaired nervous system is probably going to take around five years, based on my current progress.

          Loss of appetite is due to weakened parasympathetic function– since “rest and digest” is not working you are probably not going to want to eat much. I had times where I had to force down even small quantities of food, but luckily that symptom was fleeting. It didn’t hang around constantly for any length of time.

          Exercise promotes healing of GABA receptors. Be careful– make them heal too fast and you will regret it. Also, pushing too hard raises cortisol which we certainly don’t need more of that as floxies.

          Frequency Specific Microcurrent helps them heal– but it also can cause a lot of detoxing and if it makes the receptors heal fast you really feel it. For me it may cause anxiety a tiny bit for like a day after. But some of my friends less far along really got some intense symptoms from it. Go slowly with it.

          I have been taking black seed– nigella sativa. I was having a lot of tightness in my upper traps– definitely a sign of parasympathetic imbalance. It is like my nervous system was making me pull my shoulders up to protect my jugular. I know some really good stretches for those muscles but nothing helped at all. I took a capsule with crushed black seed in it and within fifteen minutes or so the muscle tone was normal. My shoulders just relaxed. Just like that. I have read other accounts that suggest it can improve parasympathetic nervous system function. Online reviews suggest there is not a withdrawal to it, so it probably is safe. I ran out of it today after taking it for a month and I didn’t notice anything really. But I want to get some more. It raises serotonin so if you have issues with too much serotonin or think you might stay away from it.

          Bacopa monieri (not sure of the spelling) upgrades GABA receptors in the hippocampus– it seems to improve memory.

          Those are the only things I know of, besides meditation and just avoiding panic, that will help them come back.
          Ruth

        • Dee September 28, 2017 at 6:31 pm

          Ruth. Thanks for all your good info! Hopefully things will start calming for me in the next few weeks including a more fired up appetite!!! You are a gem!!

        • L September 28, 2017 at 7:23 pm

          Dee, I lost 20% of my body weight in 6 weeks. (I had the added problem of gasping for breath so it was hard to breathe and eat at the same time) but I think a lot may have to do with the damaged gut microbiome.

        • Dee September 28, 2017 at 8:00 pm

          L. How did you overcome not eating? Did it get better soon? Was there anything you did to make yourself it better??

        • L September 28, 2017 at 8:42 pm

          well smoothies were all I could get down since I couldn’t chew and gasp for air at the same time. My ND had me load it with coconut oil, almond butter, in addition to the fruits / veges. Then I moved on to things like potatoes/sweet potatoes with a lot of organic butter on them. Before this I had always struggled to keep my weight from going up. I wasn’t heavy, just a few pounds higher than I wanted to be, but I had the hardest time putting the weight back on. It took 6 or 7 months to even get close. (now unfortunately I am back to the old problem of struggling to NOT gain weight!) I also had a terrible time with digestion, because of the gut damage. I was on both digestive enzymes and Betaine HCL. For months I took 5 capsules with each mean that had 15+ grams of protein. Over the next year and half I got down to finally one capsule. Now I just take it on occasion. I also unfortunately was probably getting too much sugar because I was using juices, like organic pineapple or coconut juice with my smoothies. I just had to get the calories in somehow. But also, in the beginning I just had no appetite. Absoultely nothing sounded good to me. Because of the olfactory nerve damage, everything smelled awful too. It really was just a matter of time, and trying to get the healthiest, most calorie dense things I could find

        • Dee September 29, 2017 at 7:07 am

          L. Thanks for the info and suggestions for food!! I going to make an effort to get more food in me or at the very least some smoothies! I used to have IBS, acid reflux and leaky gut but actually I think because I am eating all paleo my stomach is doing better so it is mostly lack of appetite! How long went by for you before your appetite came back?? I just want to get enough food in me to give me nutrition and energy to help me heal but I don’t think I am doing that right now. I need to eat more! Going to try! I hope my appetite improves soon!! Like Ruth said I guess my para sympathetic nervous system is haywire and needs to calm down!! Did you have the anxiety and insomnia also??

        • L September 29, 2017 at 10:05 am

          I was at least 7 or 8 months, maybe longer. Hard to recall now. And my gut was destroyed. For a period of time my stool was WHiTE. I thought it was all over for me. But I started on the probiotics and after a year or so I think my gut finally got back to normal. I was also putting goats milk kefir in smoothies tool. Don’t seem to have an issue with goats milk foods.

          And my anxiety, insomnia almost killed me (along with the breathing issues.) My anxiety was beyond description. I think I was trapped in the sympathetic nervous system for SO long. At times it rolled into paranoia. It was truly frightening. And the insomnia in the beginning was TOTAL. For the first few weeks I don’t think I slept at all. And again, since I was gasping for each breath, that made it worse. I did take sleeping pills because with them I got maybe an hour or two and that was the ONLY relief I got from struggling for breath. Then I would usually jolt up in bed because I also had the sensation of being strangle, and I would think I was choking. Then I would just sit up crying and gasping for the rest of the night. (I think I cried, day and night for more than 8 months.) IT was like this for months and I really just wanted “out.” When thing started to improved a bit, and I got up to around 6 hours of sleep, I started to wean off the pills. Between the anxiety, the insomnia, and then all the other physical and visual stuff going on, it was just so nightmarish.

          It is 2 1/2 years later, and while I have occasional insomnia, I get 7-8 hours sleep most nights. While I think my anxiety level may be higher than pre-Cipro, it seems mostly back to normal.

  16. Tara September 28, 2017 at 1:28 pm Reply

    That’s just what I read a couple places and a lot of it was based on benzo withdrawal. I certainly see improvement that would allow me believe it is sooner, but 18 months helped me to put things in perspective when things were not going well for so long. It allowed me to get through the rough times at a few months out to know that things might not be resolved for quite some time, but of course- every body is different and I think it depends on your chemistry, how much you took, pre-existing conditions, etc. I think with Cipro they are certainly “touchy” for awhile as they heal or remain sensitive for a prolonged period of time. Mine were hit really hard with steroids, so I wouldn’t exactly use me as a poster child for a GABA timeline! 🙂

    • Tara September 28, 2017 at 4:18 pm Reply

      Dee,
      Just curious, did your doctor say anything about what causes the head pressure? Or anything else related to FQ toxicity that is good for the order of the group? The one I saw for the IVs kept reminding me how bad they are so it wasn’t good for my mental health but the female doctor I have now who takes insurance said in her experience it can take up to two years for the symptoms to subside. She also mentioned that they can be neuromuscular blockers, kind of how they impair GABA receptors. She thinks that is what is happening with my eye(s). She said small nerve fibers heal but in six month cycles, which is why it seems to take a long time.

      • Dee September 28, 2017 at 4:29 pm Reply

        I am sorry to say that he didn’t say much more as he was mainly addressing my melatonin reaction. I am going to guess that people with brain issues, CNS issues, anxiety, insomnia etc will all heal differently. Some people seem to heal within 6 months or less from the stories I have read and some 6 months to a year and so on. I am sure it depends on your damage, the severity and other factors in healing. I really think it is hard to put a time frame on it!! Look at how much healing you had including brain issues in 7-8 months?? I think that is what you said in regards to feeling a lot better?

  17. Deb September 29, 2017 at 7:40 am Reply

    Dee,
    I don’t have much of an appetite either. I have lost 10 pounds–I only weigh 108 now. The stress really adds to it–. Do you have head pressure and did your doctor say what causes it? I don’t know if the head pressure is related to the vertigo or not. My MitoQ is at the post office and I will pick it up today. Did you have any reactions to MitoQ?

    I did see a good movie last night–The Big Sick which helps.

    • Dee September 29, 2017 at 8:10 am Reply

      Deb, I don’t really have head”pressure”. My ears feel stuffy and clogged up most of the time. My head is more of a buzz zone foggy and spacey. Feel kind of like my head is in a fish bowl of water. My Doc only talked to me about my ear noise and over active GABA receptors. I have read a lot of stories as I am sure you have and a lot of people get head pressure. I don’t know the “why”?? But from what I have read just like most symptoms as you heal, recover and improve it does go away. I know because I am in the same place as you that we want it on our time frame which means now or real soon but we have to find strength inside of us to be patient and let time heal our very damaged bodies. I wish I had a secret recipe to help us through this very hard and challenging time but we just have to keep walking toward the light out of this dark one step at a time! We must stay strong and focused on healing and yes I know….,much easier said than done!!! I have taken Mito Q for about a month and have had no problems that I know of?? I usually take the 2 pills separately 1 early morn and 1 late morn. Sometimes I only get 1 pill in a day. I don’t know if it helping but I have heard good things about it?
      Hang in there Deb! That is what we have to do and we have to keep believing in our healing to come soon!!!

      • Deb September 29, 2017 at 8:41 am Reply

        Thanks Dee for the info and encouragement. It helps!!! We have to keep believing our healing will come soon!

  18. Deb September 29, 2017 at 7:45 am Reply

    Ruth,
    I’m having a hard time with the mind game. I’m praying a lot and doing affirmations. Any other suggestions? Thanks for your support!

    • helena September 29, 2017 at 7:55 am Reply

      stay strong!!!

    • Ruth Young September 29, 2017 at 8:15 am Reply

      Deb,
      We all have a hard time sometimes. We all feel like giving up or punching the doctor who did this to us at some point. It is ok to visit that negative neighborhood– just don’t set up permanent residence there.

      There are going to be times that stress, worry, anger or fear get the better of you. Sometimes it helps to acknowledge those emotions, vent or cry if you have to. It’s only a problem if you are constantly in a state of panic or despair. So even though you feel like you are not winning the mind game right now, in reality you are doing fine. So long as you don’t linger too long over the negative emotions.

      It’s sort of like when you are meditating and your thoughts drift. You just remember that that is what brains do, acknowledge it and try to get the focus back on meditating again. It’s ok to have times where you drift toward negativity because it is absolutely unavoidable. But again– try to acknowledge it and then not to stay there too long.
      Ruth

      • Deb September 29, 2017 at 8:43 am Reply

        Ruth,
        Thanks for your encouragement!!!

  19. helena September 29, 2017 at 7:53 am Reply

    hey ruth. I just have questions about muscle and joint.. i seem to have a lot of muscle and joint pains especially still in my knees. although i fee l as if its getting better ..i still have weakness and bone cracking still.. i was wondering how long that lasted for you.. and hopefully it will go away soon. Still taking magnesium and glucosamine with chondroitin..and some omega 3 dha ..

    • Deb September 29, 2017 at 8:03 am Reply

      Helena,
      Are you still having the tingling and is it getting better too?

      • helena September 29, 2017 at 8:09 am Reply

        still have tingling and its on and off.. just annoying and kinda scary but i know it will go away. and ruth was saying i really cant do anything about it but let time take its course ..do you still have it? how are you handling it ?

        • Deb September 29, 2017 at 8:23 am

          Mine is more head pressure now and it is most of the time. I am stressing about it and the vertigo.

    • Ruth Young September 29, 2017 at 8:22 am Reply

      Helena,
      By six months out most of that had made a significant turn around. But as far as getting back the strength I had before Cipro– I am not there yet. At the gym I am lifting about twenty pounds less on the weight machines than I was prior to Cipro. So that is the objective measure for me that I have a ways to go. I’m already stronger than most women again though– at a fireworks show this summer the other women on the show were carrying racks of mortars with two women together carrying one and I was just grabbing racks by myself. It’s just that I was really strong prior to the Cipro and that was something I had built up over years of lifting weights and working physical jobs. Not sure I can ever get that back. But I’m completely functional and my joints are great– even my knees and I am prone to anterior knee pain from laterally tracking patellae. I have no knee pain these days. So recovery is definitely possible. Push the functional minerals, bone broth if you can tolerate it. Give your body back what was stripped out and things will likely start to turn around.
      Ruth

      • helena September 29, 2017 at 8:30 am Reply

        thank you for replying so quick with helpfulness!! i just want to really walk normally without hurting ..Functional sounds so good right now! I know its still only three month and im just being totally impatient.. so sorry for asking too much questions! With the bone broth is ..it better to take the liquid or the powder? and how long do you think i need to do it? thanks again

        • Ruth Young September 29, 2017 at 10:01 am

          Helena,
          I get Great Lakes Gelatin in the green can. It dissolves in hot or cold liquids. It is kind of like bone broth without the hassle of making bone broth. I also sometimes buy organic soup bases that say they are bone broth. Probably not as good as what you would make at home but it is something. I think if you tolerate bone broth it could be a lifetime addition to your diet, ocassionally.

          Here is the issue: some people cannot tolerate bone broth because it has free glutamate in it. I do not think it would actually be an issue for a normal nervous system because it also contains all the precursors for GABA. A lot of people find it helps them sleep better! For them their body is busy making GABA out of it so the fact that it also has some glutamate is a non issue.

          But some people cannot tolerate any glutamate. There is a reason and it is all tied up with genetics and the devastation of the microbiome that can accompany getting floxed. I can’t even pretend to be able to explain the mechanisms. Sterling Hill can– she is on FB. You can get the 23 and me test or another DNA test and she will look it over, do a consult with you and generate a lengthy report. You contact her PA to set up the phone consult. I don’t think she is even all that pricey but I don’t want to quote price unless I am wrong. Her Facebook posts are great because she explains exactly what gene SNP’s are causing the issues when people react to whatever everyone else can tolerate. Plus she understand the gut microbiome amazingly well. I don’t she is an MD– a scientist or geneticist, I think. Brilliant woman. So if you want to know for sure (or at least be more sure) bone broth is ok for you you could contact her.

          Otherwise, just give it a whirl but if you react to it be really really careful about MSG in foods because it is going to do a number on you beyond what most floxies experience. I think it flares us all a bit, but certain people really can’t handle it even in small amounts. Not to scare you, just putting it out there that even something as innocent as bone broth or Great Lakes Gelatin can be an issue for some of us.

          For most of us I think it is beneficial and the glutamate in it is offset by the precursors to GABA that are also in it. Also, the benefit of it having the raw materials necessary to repair connective tissue make it a really helpful tool for recovery for a lot of people. I know it helped me. I still have it sometimes– and even during my relapse last year it made my nervous system calmer and less touchy, so the glutamate in there definitely was not affecting me at all.
          Ruth

        • Dee September 29, 2017 at 10:38 am

          Ruth since my GABA receptors reacted terribly to melatonin and L Theanine then do you think bone broth “could” cause a similar reaction or no? I drank it earlier in my recovery with no problems but I also took melatonin and L Theanine earlier too and then I reacted to them at 3 months out!

        • Ruth Young September 29, 2017 at 11:44 am

          Dee,
          My gut says the bone broth should be ok for you. I could be wrong. If the glutamate is the issue then you might be ok. You reacted to things that were calming. But here is the kicker. Symptoms can cycle in a weird way where one day anything stimulating is horrible but you can calm down and then the next day stimulants are fine and you feel better being active but every time you try to relax all hell breaks loose. So I really don’t know.
          Ruth

        • Dee September 29, 2017 at 10:39 am

          Ruth, L and Tara. Did any of you have peripheral neuropathy in your legs and did it go away???

        • L September 29, 2017 at 11:26 am

          I have it in my toes/balls of feet, legs, and a couple fingers. For a while the fingers spasmed wildly out of control. (In fact, if I try to MAKE them move the way they did, I cannot.) With the exception of one finger, there was not pain involved. Just numbness. The fingers no longer spasm. I still get occasional very mild pain in one finger. The toes remain numb, but the balls of feet and calves which had also been numb, no longer are. Even the numbness in the toes I think is a tad less than it was, because I remember having so much trouble putting sandals on because I could not feel where they were on my feet and I would have to place them on with my hands. I no longer have to do that.

          PN, although ususally though of in hands/ arms/legs/feet can actually occur anywhere on the body. The strangling sensations around my neck may also be that OR mitochondrial damage. That was horrible for months but now is only occasional and much more mild. Definitely headed in the right direction! I had gotten the most IVs of phosphatidylcholine because it was supposed to help with nerve damage. (I got the recommended 40 of those.) So that may be why I improved so much, but who ever really knows?

        • Ruth Young September 29, 2017 at 11:48 am

          Dee,
          I had an inappropriate sensation of cold in my left arm and the side of my neck. I had abnormal sensitivity to cold in my hands and fingers. I had an abnormal tendency for my feet to go numb if I laid in one position for too long. Actually, that seemed to affect my whole body. Pins and needles until I shifted position but thirty seconds later it happened again. All those things went away. I still can get burning which I think is GABA receptors but it mainly seems to be my upper body affected with that now and very infrequently.
          Ruth

        • helena September 29, 2017 at 10:15 am

          thanks again. ive tried bone broth like a week ago and it didnt bother me at all. The bone broth i tried was organic premade which you could get at an organic store and it was msg free. but thanks agian with the great info ! 🙂

        • Ruth Young September 29, 2017 at 11:51 am

          It’s not MSG that is the problem in bone broth, it is the glutamic acid. All bone broth has glutamic acid.

        • helena September 29, 2017 at 11:39 am

          hey L did you have any tingling in the head or around the face area/?

        • L September 29, 2017 at 12:08 pm

          no, the only thing involving or near the face was a LOT of vision issues and the strangling sensation around the neck (and of course the “internal” mental stuff)

        • helena September 29, 2017 at 11:54 am

          ruth and everyone else thanks for all the info.. but everything is so confusing and just overwhelming… im somehow stuck with the tingling still happening in my head and around my face 😦

        • Deb September 29, 2017 at 12:36 pm

          Hi Ruth,
          Did you have the genetic testing? I would be interested in that helping what supplements might help. Thanks!!

        • Ruth Young September 29, 2017 at 1:02 pm

          Deb,
          No, I never did a consult with Sterling. I didn’t have any problems with the protocols most people use to recover. I was lucky. I happened to run across a post by Sterling Hill on Facebook and I was amazed at her depth of knowledge of genetics and our microbiome. But by the time I discovered her I was already 99% healed. If I had found her in the beginning I guarantee you I would have done the DNA testing and paid for a consult with her.

          She was the first person able to give what I feel are plausible and detailed explanations for why some people react to things like glutathione, Vitmamin C, B vitamins, fish oil and whatever else I am forgetting that helps most people but throws others for a loop. Doctors should all know what she knows. But her own doctor treats her very badly, and actually has pushed medications that Sterling knows would be harmful to her.

          She also knows a lot about neurotransmitters and what happens when we are high or low on certain ones and why some people might have high dopamine or serotonin.

          I’m telling you, the endocrine system all by itself is complicated– it was the hardest system of the body that I studied in college level anatomy and physiology courses. Sterling not only has complete knowledge of it, she understands what happens when one or more chemical messengers are out of balance or when the body is unable to respond to or process various hormones or neurotransmitters. She also has thorough knowledge of the Krebb’s Cycle and all also of those twelve blood clotting factors I had to memorize and barely remember today. She not only learned all that stuff she can apply it and understand how the body’s systems interact. Plus her knowledge of genetics really is cutting edge. I am guessing some of what she knows was not even discovered at the time some floxies were harmed.

          Science is moving at lightning speed– except where protecting Big Pharma and Monsanto are concerned. Then it is all denial denial denial and calling people like Sterling quacks and hypochondriacs and conspiracy theorists etc… But I know just enough, from my college level courses on the human body, to recognize that she is making sense, that she does actually know what she is talking about. If all doctors knew what she knows medicine would be in a whole new place. But we can’t go to that place because it would reveal that body systems are connected, that genetic differences mean cookie cutter protocols don’t work for everyone, that many medications are actually dangerous for certain people and that treating the symptoms instead of addressing the cause is useless. We get to that place and Big Pharma is going to lose billions of dollars.

          But if you want access to the best info available about what is going on in your body, you can look her up on Facebook and call her PA. She answers general questions on FB when she can and posts great info, but if I were still very ill I would work with her directly. Sometimes she recommends certain medical tests. Not all of them are covered by insurance because not all doctors even know how to read them. She does.

          She is chronically ill herself and with more and more of us being harmed she is constantly booked. If you want her help I would do it sooner rather than later.
          Ruth

  20. Deb September 29, 2017 at 8:11 am Reply

    Tara,
    Has your head pressure gotten better? I feel as though I have a tight band on some parts of my head especially the back of my head. Do you think this is neuropathy–I thought it was at first but now I don’t know. Sorry to keep bugging you. Thanks again.

  21. Sterling Hill September 30, 2017 at 4:54 pm Reply

    Hi everyone, I am a floxie. And thanks for the kind words Ruth.
    I did not even know I was a floxie until Julie Horst came to me one day and explained what was going on with the floxies and how I might want to research.

    So research is what I did.

    I was given IV levequin in the hospital during 2 surgeries and did have pulmonary embolisms. I remember my ex a cardiovascular surgeon calling in a script of levequin one day for me and after the first dose within 5 minutes I was screaming from the pain shooting down my wrists and ankles. Also I went temporarily blind and lost feeling in my left arm for a few minutes and had a TIA! Where he was telling me I had an allergic reaction, I now know I have been floxed. There was another time I took a full 10 day course of cipro and halfway through I noticed I could not walk up or down stairs because of my left knee. A few days later I was being carted off in an ambulance with a severe reaction to pineapple where I was literally vomiting with diarrhea that was out of control and the inflammation was so bad that I was on morphine for 3 days and then was sent home and strange lesions started appearing on my face and one eventually went into my eye and ulcerated it and turned one of my brown eyes blue.

    In the beginning of trying to understand what was going on with the floxies I was focused on EDS SNPs and ran across G6PD and that cipro was on the drug to avoid list and I was focusing on GAD genes since many had GABA A receptors hugely impaired.
    This is was still not the answer. But it was the beginning of it all.

    What we did see is that the vets given antrhax with squalene adjuvant in them and/or cipro and people getting 1-3 rounds of gardasil or other HPV vaccines were having the exact same injury. And children with severe autism had lots of the same issues. Even people with horrible EMF sensitivity were having many of the same symptoms. Also people with Crohn’s and ulcerative colitis. Also people with mast cell huge histamine response. People with EDS should also be concerned about what I will be writing about here and you will see the larger picture as I explain. People with POTS (15% are g6pd deficient) were also having the same symptoms and many had one or more of what is listed above. So what do they all have in common? A HUGELY diseased gut microbiome.

    Dr. Bradstreet had passed away and I had been studying his research on GcMAF and saw it helped 4 out of 10 with a diseased gut microbiome, Dr. Susan Owens had sent me a long letter and explained to my what was going on with children with autism and many to most chronically ill which I will put in detail down here. Dr. Stephanie Seneff was telling me sulfation is the key to life and I was studying her research. Suzy Cohen was telling me that most chronically ill who were taking D3 it was going into D1 25 and was not breaking down and we needed to find out why. Well that letter that Susan Owens sent to me was like a 2×4 hitting me right upside the head. I will copy and paste it and then I will explain and then after I explain what is in the letter more you will see EXACTLY what is going on with the floxies, vaccine injured people and many others with a diseased gut microbiome.

    Here is the letter:

    Years ago, when I first heard what ****** was saying about CBS, it did not jibe with what my years of work in this field had taught me,. The new snp **** was talking about was new to me, so I sent what she had said about it to the scientist who had done the largest study on this 699T snp, and he said **** was incorrect, that there was no evidence it caused an upregulation. For reasons that no one has figured out, because of how genetic material is linked, some OTHER issue that travelled with this snp was modifying homocysteine levels ONLY when someone was given a 5 gram load of methionine, which never happens in nature. But the possibility of a gene that could lower homocysteine was seen as a potential protection against heart disease, which is why it was being studied.

    No one in research saw this snp as a problem if it did upregulate CBS, but rather that it was a benefit, but, unfortunately, no found that it really did much at all.

    Later someone sent me the study that ***** based this all on, and it was talking about a different mutation, and one that truncated the protein. When the protein was shortened THAT caused CBS upregulation. It doesn’t happen with a silent polymorphism like 699T. There is no CBS upregulation because of 699T.

    Obviously, ****** is very good at her publicity, so even though what ***** said on this was not correct, ***** publicized it so much and so far and wide that now everyone thinks it was correct because it has been repeated so much.

    There are many other things **** said to do because of this that are VERY dangerous if you are running out of glutathione, which is a problem in many people who are chronically ill.

    I worked with Sid Baker, Jon Pangborn and other DAN! researchers to draw up a map of this chemistry I think a couple of years before ***** showed up, and it was given out at a DAN! conference where I was the speaker on the transsulfuration part of the pathway. Maybe ***** was there and that gave ***** the idea to get into this area. I have no idea what got **** started on autism since it was very far from what ***** did before.

    My work shifted nine years ago when I realized that what was pushing the problems in the sulfur chemistry for autism (and now I know for many to most people chronically ill) is the body running low in B6 activity so that its sulfur issues cannot be resolved and it puts people in futile cycles.

    Since methionine synthase turns off in oxidative stress, that’s why using folic acid cycle supplements to try to enhance the folic acid cycle cannot really help, since that cycle has already been turned off by a switch until the sulfur issues are resolved. THE WORST thing you could do in this situation is to restrict sulfur, because that makes it where the issue cannot be resolved.

    So what happens instead? I’ve seen so many amino acid tests where the body responded to sulfur restriction by breaking down muscle to get at its amino acid content. There is a specific marker for this, 3-methylhistidine, but the reference ranges on the amino acid test are so so affected by changes in creatinine, that the reference ranges are too high, and the lab won’t flag this problem.

    After the adjustment I do that gets rid of the problems with creatinine, you can see that during this situation you may see elevate in urine amino acids that are actually scarce and being wasted because they cannot be utilized in the kidney after someone starts running out of ATP.

    When B6 activity is low, the body starts making endogenous oxalate, and that harms oxidative phosphorylation, so that you stop making sufficient ATP.. That can cause sulfur wasting into urine since the sulfate cannot then be used for sulfation. Sulfate has to be converted into PAPS to be used to sulfate anything, and that requires ATP.

    Sulfate and oxalate are regulated by shared transporters, and any changes in sulfite or sulfate can occur because of all these other influences which are complex.

    I don’t know eyerything that ****** says, but I’ve heard that ****** wants to restrict sulfur until sulfite or sulfate levels in urine go down. That may reflect a big misunderstanding of why its levels would increase there in the first place.

    So this letter may be Chinese to all of you but it made lots of sense to me since I was studying gentecs, stopped focusing on genes and started looking into additional pathways and DNA related to the gut.

    So what happens to a floxie?
    Their GI microbial become HUGELY compromised and then their junctures in their GI tract become very loose and their cells stop communicating well. Prior to leaky gut our junctures are tight and our cells are communicating well so when we eat broccoli our cells know just how much choline, calcium, iron and oxalate to absorb and what to throw away. After leaky gut our junctures are loose and our cells lose communication and we don’t know what to absorb. One thing that has been discovered is that we absorb up to 48% more oxalate than what we should be absorbing because our glycine cleavage system can only hold 1-2%. So once floxed we can be absorbing up to 49-50% more oxalate and we only have the ability to store 1-2% of it.

    Oxalate share the same transporters with sulfate and sulfite. One of the transporters is called SLC26A1 and two of the reasons it is not on my variant report are because 1. they do not have any of the clinically relevant SNPs and 2. you just need a compromised gut microbiome then all hell breaks loose with oxalate on SLC26A1. Now remember Stephanie Seneff always states sulfation is the key to life. Imagine this SLC26A1 gene as a train and your body the railroad tracks. It is a sulfite anion transporter but it also transports sulfate and oxalate. Now imagine the SLC26A1 train has a conductor on board. This conductor is supposed to be transporting the oxalate, sulfate and sulfite. The conductor is very worried about the oxalate so he decides to dump the sulfate and sulfite in the urine (wasting) until he can get the oxalate out of there. Now the conductor sees all of this oxalate and still the train is overflowing so the conductor then has to dump it somewhere because he cannot get it out of the body. So if Johnny had 2 years of high blood pressure and has damaged vessels and arteries the conductor will use it as spackle on the damaged arteries (most all atherosclerosis is calcium oxalate crystal). Now lets say Suzy was a chronic smoker or had childhood asthma the conductor will drop it off in the lung and later she is diagnosed with COPD (ALL COPD is calcium oxalate crystal). Amy drank lots of sodas and had damage to the kidney so the conductor will drop it off in the kidney (most kidney stones are calcium oxalate crystal). Fran had a bad car accident and bled on the brain and suffered with a neck fracture so the conductor will drop it off in the brain (they find calcium oxalate crystal in the brain of people with MS) and in the neck like the salivary glands (many salivary stones are calcium oxalate crystal) Steve had lots of tissue damage so the conductor will drop it off in the tissues (Scientists have discovered that when biopsying the sore tissue in people with fibromyalgia that there is calcium oxalate crystal). Sarcoids when these are dissected they find calcium oxalate crystal. So this is just the beginning of what happens to a floxie and others who have an impaired GI tract.

    Now there is a glycine cleavage sytem and a glyoxylate metabolic process. Oxalate are absolutely necessary and are needed to be stored in the glycine cleavage system and the glyoxylate metabolic process will actually shunt it out in times of need. Imagine oxalate as mother nature’s antibiotic. Oxalate kill the shikamate pathway of microbial good and bad. So if Nancy goes out to dinner with friends and gets food poisoning, her functioning glycine cleavage system and glyoxalate metabolic process will release the oxalate to kill the microbial to help her get better. So it would be dangerous to remove all oxalate out of the body. Remember, disease is about 2 things, too much of something and not enough of something. But when we have too much oxalate, we are killing the shikamate pathway of our microbial. Bifidobacteria and oxalobacter are two microbial that will run low as they eat up oxalate. So when you have too much oxalate you will destroy your gut microbiome. You have too much of mother nature’s antibiotic in your body.

    Plants and trees have naturally occurring oxalate to protect them from bugs and bugs have a shikamate pathway. So they fly up to the leaf and eat a little and they are consuming these tiny microscopic glass crystal-like shards called calcium oxalate then they get ill and if they eat too much they die. So people with super bad leaky gut like the floxies always do much better going on a low oxalate diet. Now going from high oxalate to low oxalate can put you on an oxalate dump and you can end up in an ER. To learn how to measure your oxalate like you would calories it is best to go to lowoxalate.info and join the “Trying Low Oxalate” group on FB or Yahoo. They will teach you how to do it right. Dr. Susan Owens is the one who has taught this and has perfected this diet for many many years. She has helped over 17,000 families, not just individuals. Remember when you are floxed your junctures become loose and your cells do not communicate well and then you absorb 48-49% more oxalate than you should. ALL floxies have this problem.

    One other thing floxies should avoid is fluoride. Well we know that all fluoroquinolones are a fluoride and that antibiotic is what caused the junctures to become loose and caused the cellular miscommunication. All antibiotics can do this to some extent. But something you may not know about is Roundup also known as glyphosate which is n phosphonomethyl glycine. Hear the word glycine hence the glycene cleavage system. Glyophosate is an oxalate and if you have loose junctures you will absorb much more than someone without leaky gut and at 0.01 PPB it is an endocrine disruptor, neurotransmitter disruptor and so much more. Glyphosate shunts into oxalate and kills the shikamate pathway of microbial and that is why it was patented as an antibiotic 4 years ago. Deductive reasoning tells me if all floxies have leaky gut AKA sulfation/oxalate issues, they should avoid foods with glyphosate. This means all GMOs and all plants that have glyphosate sprayed as a desicant. More or less USDA certified organic. Other antibiotics will cause more leaky gut. Foods like chicken, turkey, cow, chicken are on farms where Roundup is used should be avoided. Know your farmer if at all possible.

    Something else that oxalate do which happens to the floxies. Imagine oxalate as a kitchen magnet. Now put metals and minerals up to a kitchen magnet and what happens? They will stick to the kitchen magnet. Now remember what I said before about when the SLC26A1 gene is overloaded with oxalate? It goes to damaged tissues and organs! Well that oxalate deposited on the body is now sitting around like magnets and metals are sticking to the oxalate and minerals that should be going to the cell wall are now sticking to the oxalate so you will see things like high ferritin, low ferritin (depends on B1 assimilation and it’s mineral cofactors and HFE to name a few which way it will go) and high free copper. Oxalate love copper, manganese, magnesium and molybdenum to name a few. So the very very very first thing that floxies should focus on is minerals with a few other things. You cannot assimilate vitamins and enzymes without minerals in the cell wall.

    Now there is the glyoxylate metabolic process. All floxies have this process broken due to the leaky gut the fluoride has caused in the fluoroquinolone. This is what I study. What happens when this process gets broken? We stop assimilating our b1, b2, b3, b5, b6 and usually get depleted or toxic (not assimilating) b1, b2, b3, b5, b6. Then we usually become deficient of alpha lipoic acid. These are all cofactors on your glyoxylate metabolic process. What happens when these vitamins become deficient or are not assimilated because of the mineral disruption? Your body makes endogenous oxalate. So you do not have to eat oxalate from plant nor do you have to consume glyphosate or sit right on top of a smart meter which also causes oxalate issues and I will explain further down, you will make oxalate on your own. This is like making antibiotics because oxalate works like an antibiotic as it kills the shikamate pathway of your gut microbial when you make so much that your SLC26A1 gets overloaded.

    What happens when this process is not functioning?

    Well we all know that floxies tend to have tendon and ligament ruptures. Sound like floxies and people with EDS have lots in common here. Well when the glyoxylate metabolic process is not working our tricarboxylic acid cycle (citric cycle) will not function well at all. And we assimilate many amino acids like lysine and proline during this bodily process. Lysine and proline are two of the amino acids that stop assimilating. They require a healthy citric acid cycle and glyoxylate metabolic process to work properly in the body. What is required for collagen production? Lysine, proline and vitamin C. So until you get this process working they tell us that we should not use more than 250-500 mg a day in ascorbic/ascorbate (anymore will shunt into oxalate and glutamate until resolved) and we should be using the flavanoids in food source C’s. Some of my favorite are G3 a product by a company called pharmanex, rutin, rose hips, rose petal tea, lemon water and brussel sprouts. Until we fix the minerals in this process we will backfire on things like bone broth and probiotics. Why do we backfire on bone broth? Because of the calcium oxalate crystal deposited in the body loves to grab manganese instead of it going to the cell wall and in order to assimilate the glutamic acid in bone broth needed to heal the gut we need manganese to assimilate it. Another example is the proline. We need B6 activity to assimilate the proline that is found in bone broth. So we like to get minerals in place then micronutrient testing of our kreb b’s and knowing exactly what we need. After we can go in with bone broth or something like Restore or Willard’s Water to tighten the junctures in the gut. Then and only then can we take probiotics If we take them when the gut is super leaky, they will get where they do not belong and cause things like mass inflammation and panic/anxiety.

    When this pathway is broken it will impact genes like MTHFR, MTRR and GAD which require things like b2 and b6 activity. Also B1 seems to be a huge factor with us and we exhibit symptoms of beriberi which is due to the tricarboxylic acid cycle being impaired on the glyoxylate metabolic process and many of us need as much as 450mg a day of benfotiamine to get into the brain (never take this without first talking to a practitioner that knows when to give it after other things are in place). It assimilates many lipids needed for neuro health. For example fish oil (the glyoxylate metabolic process is responsible for fatty acid assimilation) sometimes cannot be assimilated by us floxies until we get these things in order and fish oil is very important for brain health. Our brains are and endocannabinoid system and fish oil after being assimilated gives us healthy levels of arachadonic acid which feeds our endocannaboid system in the brain. For those of you who live in medically approved CBD/THC states, an indica strain high CBD, low THC ratio can help. Not hemp but the actual female bud has over 144 cannabinoids that can bypass this fatty acid assimilation issue we have. And CBD/THC has been proven to make stem cells and also assimilate radiation better than iodine.

    Remember how I talked about SLC26A1 being a sulfite anion transporter responsible for transporting not only sulfite but also sulfate and oxalate? Well when this sulfate gets dropped off and not used because the SLC26A1 transporter is too busy transporting oxalate? You then will not be able to sulfate bile acids, adrenal hormones on the SULT (sulfonotranferase) genes, carcinogenic estrogens and even D1 25 which requires a sulfate donor and poor sulfation of D1 25 is highly related to parathyroid disease and parathyroid cancer. Even glutathione is a sulfur based molecule. Sulfation is indeed the key to life.

    Another one that floxies should avoid. Smart meters. It is proven when hooking up a healthy individual to an EKG that there are irregularities in heart rhythm waves of healthy individuals so this tells me a floxie would be very compromised. Why? Your calcium is already disrupted because of the leaky gut and now you are going to have even more calcium disruption where instead of the minerals that you have already become deficient in the cells the calcium will get shunted into the cell and disrupt even more minerals from entering the cell so this makes being floxed even worse. If you cannot get smart meters off of your house or neighbor’s homes good quality orgonite on for smart meters and also home orgonite shields can be purchased at places like safeconnectplus.com. 5g is here as well and is more microwave radiation disruption to your cell communication and is displacing calcium and minerals. Why is this important? Because minerals are needed in the cell wall for cellular communication.

    This is quite complex. I have created an app that contains the glyoxylate metabolic process for this reason. You can find it at http://www.mthfrsupport.com. I also have a video on my home page on my feed at the top explaining this biological process at Autism One you can watch. If you have not done your DNA yet and want to. Please do Ancestry DNA vs 23andme as 23andme has just recently changed their DNA testing chip and they are missing key SNPs. My app is compatible with Ancestry DNA. I do 4 hour consults to help them understand this and NEVER turn anyone away. So that means if you cannot pay me, you will still get a 4 hour consult and 30-50 pages of notes. My AA can be contacted at 504-616-0965. If you cannot afford my app, I can be contacted and I will give you a promo code to run it for free. I do have to eat and pay bills like everyone else but I made a promise to God never to turn anyone away who needs this knowledge.

    Ever ask yourself why this was not happening before to your impaired DNA and it happens after you impair the gut? Your gut microbial is your oil in your engine and your DNA is your engine. For example someone with +/+ GAD line vs someone with a -/- GAD line (+/+’s will have a harder time breaking down glutamate into GABA than -/-‘s) and will have higher levels of lactobacillus rhamnosus to support their impaired GABA A receptors. You would never put the same grade of oil in a Mercedes Benz as you would a Ford F150 and we must remember this when healing a person’s gut. We all run on different grades of oil. And until we get the right grade of oil in our engines our DNA will start to epigenetically express.

    Help heal and love,

    Sterling Hill

    • Dee September 30, 2017 at 5:25 pm Reply

      Ruth. That piece written by Sterling was extremely hard to understand all of the terminology. Can you simplify what her suggestions are for floxies to heal? Things that help us and things that don’t in terms of food and supplements. It was confusing to me??

      • Ruth Young September 30, 2017 at 6:16 pm Reply

        Sorry, Dee, I’m still learning myself. I think we are all different so it is impossible to simplify it down to Protocols that will work for everyone. I’ve picked up some things from Sterling’s FB page that have been helpful for me– like taking zinc at night because if you are under stress during the day you are going to dump it. But I think the main way Sterling could help you is that she is a person who can interpret DNA tests. It is not hard to get one– 23 and me is fairly cheap– but then what to do with the information? Give it to someone like Sterling and she can tell you what to do with it.

        I understand quite a lot of what she is saying because I took college level anatomy and physiology courses multiple times. I can’t give you that background knowledge in a quick summary. I can’t completely explain what she is saying because when it comes to the genetics I am still learning. I suspect much of that knowledge was not even discovered yet at the time I last took a course on the human body, or if it was it would not be included in an introductory course anyway.

        Some floxies don’t heal long after others with similar symptoms are well. Some floxies don’t respond well to what helps most other people. If you find yourself in that desperate camp I think Sterling could be a great resource. But most of what she’s talking about probably didn’t even happen to me, or if it did it reversed on its own. For some people there are complicating issues that are very hard to understand.

        I mentioned Sterling as a resource because that is where it gets so hard to know what to do and so frustrating for people when they can’t figure out why they aren’t getting any better. And that is where people start spouting junk science and giving suggestions that do two very harmful things: they frighten everyone unecessarily by saying everyone needs to avoid something just because people with a certainty genetic variation can be harmed by it and they suggest solutions that are really not going to make the situation any better because they don’t really understand the true reasons people aren’t healing. Sterling does. If you feel you need a consult with her, it is definitely something I feel would be worth the money.

        But if you feel like you are healing, with ups and downs along the way, and that what you are doing is working (albeit slowly) then don’t worry about understanding all she knows. In the end you really only need to understand the things that apply to your situation. Sometimes thinking too much about every genetic abnormality or deficiency of the their microbiome that messes people up, even though it may not be your issue at all, just increases your stress.
        Ruth

        • Dee September 30, 2017 at 6:45 pm

          Thank Ruth! That helps me understand a little more what her research is all about. It sounds great if you are struggling with healing but I am going to hope that my healing continues to move forward! I have made some improvement and of course had setbacks or cycles come and go but I think having cycles is a sign of healing. Since I am starting into my month 4 I keep praying that I will have some good improvement in the next few weeks! And yes reading Sterlings post did stress me out! Too much info that was overwhelming and wondering if I am on the right path…..but hopefully I am! My biggest battle is not worrying about all of this and raising my stress and anxiety level! It is enough to make you go nuts! I’m trying to chill out!!

      • Ruth Young September 30, 2017 at 6:41 pm Reply

        Dee,
        I just noticed Sterling suggests Ancestry DNA over the 23 and me now, so if you want to get DNA testing done, get that one.

        I think a lot of floxies are trying the low oxalate route. Sterling gave a link for finding info on a safe and effective low oxalate diet.

        I never even knew about oxalates until after I had pretty much healed. So try not to panic if it seems like information overload. A lot of people simply get well over time even when they do a lot of things wrong. The body’s capacity to heal is amazing.

        But if you want to invest in a little more knowledge that could save you missteps and maybe help you heal faster, because what you are doing is tailored right to you instead of hit or miss or guess work or asking multiple floxies if something works for them, then get a consult with Sterling.

        Think about it– that is what most floxies do. Ask other floxies if they had such and such symptoms and if they took such and such supplements or did certain treatments. But we are all different. That information is pretty much useless and could be dangerous. Consulting with someone like Sterling would be safer. I didn’t have that option. I didn’t know anybody knew what she knows. If I had known about her in the early stages I would have paid for a consult.

        Luckily, my body seemed to have righted itself somehow and I feel fine most of the time now. So I know healing is possible. But I can’t say that anyone else’s journey will be the same as mine. I get asked to tell people that all the time and I really can’t because we are all different.
        Ruth

    • Ruth Young October 1, 2017 at 1:07 pm Reply

      Sterling,
      You are so amazing! Thanks so much for posting this here, and I hope you don’t mind that I have been steering people in your direction. We need more people like you. I just read your FB post where you said people should take the report they get from you and present it to their practitioner. Of course, very few practitioners understand the connections between genetics and nutrition for healing. It is important to take things in the right order, not just to throw a bunch of supplements at the problem.

      I did throw a bunch of supplements at it and somehow I got better. But obviously, that is not going to work for everyone. But it has been the approach ever since the online flox groups got going and people started sharing what had helped them. In a way you can’t blame us– we only knew what we knew. We were desperate to get better, and when we did we were eager to help others. And many floxies do get better by simply giving their body a little more of what it needs to heal and giving it time, of course.

      But the more your posts help me understand why some people don’t heal or take an inordinately long time to heal or react to many supplements, the more I realize the extent of the crime being perpetrated on all of us by Big Pharma with our own doctors as their accomplices. The doctors don’t even know the mechanism of action of these drugs, yet they prescribe them. They don’t even know they basic supplements that seem to help most people much less how to help those who aren’t getting better. They have no idea of the connections between genetics and nutrition, or which genes could get switched on due to changes in the microbiome. They are completely ignorant of all of that– so there is no way they can possibly fix any of us after they damage us with fluoroquinolones. They don’t even seem to understand the difference between a risky fourth line agent and a relatively safe first line treatment. There is no excuse for their ignorance.

      Thank you for all you do for the floxie community. I’m glad to see you connecting with the community at floxiehope. I know you have your own struggles, so you are in my prayers.
      Ruth

  22. Dee October 7, 2017 at 5:54 am Reply

    Ruth, L and Tara, I get a few hours of broken sleep every night but am still suddenly waking up at 4:30-5:30 with quite a bit of anxiety. Did any of you find anything that helped with that? Did it just slowly get better or go away?? I feel like if that would improve I would have a better night of rest but that just won’t go away at this point! Any suggestions? Will this eventually stop?

    • L October 7, 2017 at 9:01 am Reply

      I would be lucky, initially to get even an hour sleep, and then when I finally did get 5 or 6—yes I would often wake up in the night (although often it was because of a sense of being strangled, so I though I was choking.) It did finally go away with time. I was one of the ones who had to take sleeping pills to even get an hour’s sleep, but my case was different since I was gasping for breath. That was my only break from not feeling like I was suffocating. Once I was able to wean off the pills, and get 7 hours sleep, I also stopped waking up from anxiety. For me I think it was just time.

      • Dee October 7, 2017 at 9:46 am Reply

        L.Thanks for getting back! I kind of figured time was the answer but at least it got better for you! That is hopeful!
        Tara/Ruth. Any ideas or suggestions?

    • Deb October 7, 2017 at 9:52 am Reply

      Dee and L,

      Dee,
      I’m still dealing with the anxiety too. The tingling/pressure on my head increases the anxiety, and I’m still trying to determine what supplements make the anxiety worse. Not sure what to do. The deep breathing can help, but it doesn’t seem to last too long. It has helped me get to sleep though. I think Ruth and Lisa said the uridine helped them, but I haven’t tried it. We have to keep believing things will get better soon.

      L,
      Glad to hear time helped. Also glad you’re doing so much better.

      • Dee October 7, 2017 at 10:51 am Reply

        Deb. I know time is a big factor in getting better but it sure is hard to deal with day to day! Do you sleep all night or wake up early with anxiety? How is your dizziness doing? I won’t take anything calming as I had that reaction to melatonin which I am still dealing with the bad buzzing in my head! So no uridine for me! Hope you are a little better!!

        • Deb October 7, 2017 at 12:32 pm

          Dee,
          I never sleep all night, but my sleep is better some times than others. I don’t know exactly what’s causing the anxiety. I don’t wake up early with it. I have it somewhat strong for a day or two and then it gets better. And then I’ll have it again. But it hasn’t stopped yet.

          A couple of days this week I felt a little better. I started back with the CoQ10 and I think it helped. I would like to get to the place I can take all the supplements I want to take, but I’m not there yet. I really want to be well.

        • Dee October 7, 2017 at 12:38 pm

          Deb, I hope we will both start to feel better real soon!! How is your dizziness? I am glad to hear you are sleeping pretty well and that your anxiety is not so bad that it is debilitating! We have to keep the faith for healing and recovering to come soon!! I just want to get better too!! 🙏🏻🙏🏻

        • Ruth Young October 7, 2017 at 1:05 pm

          Dee,
          I can’t guarantee it but you would probably be ok with uridine. It doesn’t make me sleepy. It has it’s own receptors in the brain so you can bypass missing GABA receptors with it and it does help with sleep and anxiety. But if I am just restless and tossing and turning it does not make me sleepy. Uridine helps me sleep when I know I could sleep but every time I get close I get an increase in symptoms and end up feeling more alert. It can increase levels of GABA if they are low but it’ also main mechanism of action is through an entirely different set of receptors.
          Ruth

        • Dee October 7, 2017 at 1:15 pm

          Ruth. Thanks for the input about Uridine but I am gun shy about taking anything! I am still having head/ear buzzing from taking melatonin it fired up something in my brain!! I hope it starts to settle down! Did you anxiety go away in 5/6 months? Were you waking up suddenly early in the mornings?

    • Ruth Young October 7, 2017 at 1:17 pm Reply

      Dee,
      For about two years I was symptomatic upon waking pretty much every morning. It would get better after I was up for awhile. Now I wake up feeling completely normal.

      I think with damage to GABA receptors it is hard for our bodies to relax and sleep. After a whole night of it we end up waking up with a paradoxical response to a good night’s rest– instead of being rested and feeling well we have symptoms. For me it was waking up with half my face being numb, a sensation of pressure in my face, dizziness and probably other things too that I actually have forgotten about. Over time it does get better. So much so that I actually had to think back to that time when mornings were not good for me. Now I think morning is my favorite time of the day.

      I used to have to take magnesium immediately upon waking. I had to have breakfast right away. If I didn’t I would not have the energy even to get dressed and my anxiety would be through the roof.

      Now I go out and do my walking in the back yard while my kitty plays, since he has his enclosure back there. Sometimes by the time I am done walking, stretching and doing some planks and other strengthening exercises I have been up for over an hour, maybe two. Then I come in and eat and take my supplements. And through all of it from the moment I get up until I finally leave for work (I go in quite late now, yay!) I just feel good.

      I used to hate being at home in some ways because I feel relaxed at home and feeling relaxed brought on intense symptoms. Sometimes I honestly was better off at work. Now I feel very relaxed and happy in my home.

      I felt so strongly at first that even though I was at home I really wasn’t here all the way– I felt so horrible that it seemed like I might die at any moment. I felt like I needed to crawl out of my own skin so all places on the face of the entire earth were equally horrible. There was no refuge for me anywhere and certainly not in my home. Many times, I felt worse there!

      None of that is true now. I feel truly a part of this world again, able to fully live my life. Even when I have a little downturn I am so used to living with this that it doesn’t scare me. It just forces me to slow down and rest and in the end that is probably a good thing.
      Ruth

      • Dee October 7, 2017 at 1:22 pm Reply

        Ruth. That makes me have hope! But you did start feeling a lot better at 5-6 months didn’t you? Were you really anxious and miserable for 2 years? I thought you felt half human at 6 months?

        • Ruth Young October 7, 2017 at 1:53 pm

          Dee,
          It was over two years before I started having lots and lots of days in a row where I felt completely normal for the entire day. But even though I would wake up feeling weird every morning I still would be ok once I got going. And it was only in the first couple months where if I did not eat meals exactly on time and take magnesium right when I woke up that I would not be ok. Within even the first four months I was starting to have some resiliency back.

          But the nervous system damage just takes a long time. I got used to feeling kind of shitty when I woke up. Then at some point, without my really noting the exact day or anything, I began waking up feeling fine and starting the day without any strange symtoms. I had learned to ignore a lot of stuff. Then suddenly I will realized I was not having to ignore it because it was gone. Sometimes things will still return here and there in a milder form but I have adapted, so it’s not a crisis.

          When I first was floxed every symptom was a crisis. Not feeling ok in the morning was a source of worry. Not sleeping well at night made me worry. Getting a little tired made me worry. I am getting better about that– more sure of my healing, less concerned about it when I don’t feel perfect. Not to say the worry never comes back, but I almost getting better at controlling it with logical reasoning. For example, I had a bit of a relapse Thursday afternoon through Friday and one symptom was some pretty extreme fatigue. The worry says, “Must be mitochondrial damage. You are screwed.” My logical brain replied, “No, you are not damaged. You worked a twenty hour day followed by a ten setting up and tearing down fireworks shows this summer with less fatigued than half the crew, half of which is half your age. You just worked too hard this week and menopause is really knocking on your door at this point so the fatigue is probably related to doing too much and going through hormonal changes and not floxing.” Worry gone.

          Sometimes you have to talk to yourself to get rid of the worry voice in your head. That gets a lot easier when after nearly four years, getting floxed never really took away anything you truly wanted to do and you’ve had some moments where you physically felt not only strong again, but young! (All those anti-aging supplements do pay off.)

          I cannot say I am at 100% healing yet. I can only say that by about five to six months I had seen enough improvement to feel that I could go on living the life I had before, for the most part. Over time I have just gotten steadily more and more like my old self, including regaining the ability to feel all emotions deeply and to think about things in the way I used to and to process experiences and emotions the way I used to.

          I regained physical function first. Then I learned to cope with the uncomfortable nervous system issues as they gradually lessened– the better I could cope the more mild they were. That helped.

          And most significantly, aspects of my personality and ability to experience the world in the way I used to retuned around year 2 1/2 to 3. I didn’t even know what was really gone until it came back. Even in the midst of some pretty intense recent relapses the aspects of my personality that had returned remained intact. I was still entirely me, even though I was uncomfortable. So I would say no relapse put me all the way to the beginning because I retained the physical gains, like tendon healing and muscle strength and improved stamina (though all could slightly flare during a relapse, including some increased tendon pain– probably from muscle tightness) but I retained that sense of being wholly myself. Myself unable to look at a computer screen because it makes my heart pound– but still wholly myself. I can’t come close to describing that, I guess.

          I was by no means symptom free for long stretches of time prior to the one year to maybe even eighteen month mark. This takes time. But for me, I kept looking for what I still did have. I didn’t focus on the remaining symptoms, I focused on what was going well and what I could still do.
          Ruth

        • Dee October 7, 2017 at 2:15 pm

          Ruth. Thanks for your encouragement and hope! You have a special gift communicating info that is helpful and also informative! You always amaze me with your knowledge and experience in battling this monster!!! I will hope and pray that by 5/6 months I will feel improved enough that I can try to start to engage in my life again! I have missed out on so much because of brain fog, dizziness and anxiety! I pray that I will start to have some relief from those symptoms in the next few weeks!!! Thank you again for always giving hope! You always raise me up when I am in that dark place feeling hopeless 😍

        • Deb October 7, 2017 at 2:17 pm

          Ruth,
          When I get worried and scared, I turn to my siblings who are supportive, but I know they really want me to feel better. I try not to turn to them very often. But I know they are tired of hearing that I’m not well from an antibiotic after three months. I suppose I should not turn to them but I get scared and want support from them. I try not to mention much of anything to friends. Any suggestions on how to better handle this with family?

        • Ruth Young October 7, 2017 at 4:26 pm

          Deb,
          I say keep sharing this experience with family and friends because talking about what is troubling you with those who care about you will help strengthen your parasympathetic nervous system. It will help you cope. Your family especially, but your friends also, should support you! What are we on this earth for but to care for each other? And if you had MS I’ll bet you would get support from them in spades.

          They do not understand that your adverse drug reaction caused you to have a chronic, systemic, relapsing-remitting illness. I do believe your prognosis is better with FQAD than MS. Once in awhile you hear of people who truly managed to heal their MS or to at least slow the progression of the disease so that they are in remission more than they are relapsing. But much more often floxies do see an end to their symptoms of autonomic dysfunction. Granted, in some cases it takes ten years, but they healed!

          For most it takes 18-36 months and sometimes there can be nerve or tendon damage so severe that it never heals. Also possibly such damage to the microbiome that food and chemical sensitivities persist for a very long time if not permanently. Those are the facts. Also, epigenetic changes can be the result– genes switched on that cause illness. These are not side effects. It is a chronic systemic illness, which the FDA called FQAD or fluoroquinolone associated disability. You have FQAD. It doesn’t have a diagnostic code yet but I believe it eventually will.

          When you talk to them you can tell how it is going with your chronic illness. I often explain it that way in professional settings or to people I do not know very well– I say I have a chronic relapsing-remitting illness and sometimes relapses may prevent my full participation in certain activities temporarily. I don’t really care if they think it is MS or what they think. Sometimes if there is time I explain that it was caused by a fluoroquinolone or say that it is FQAD. Who cares if they don’t believe Cipro can cause a permanent illness? They can go around believing the sky is green if they want, but it will still be blue.

          I was widowed at age 25 and remarried just less than two years later. My husband’s family wants to pretend I never was married before– that that whole part of my life didn’t happen– but their wanting that does not make it so and I still talk about my late husband around them even though they don’t like it. It would hurt me to never speak of him because then it would be like he never lived. It helped in the early days to talk about being widowed because marrying Jeff did not stop the grieving process. It is a life long process.

          Sometimes I think of that first year I was a widow and I’ll think I’m remembering a post flox experience. It was in many ways as bad as being floxed. Yes, I am going to talk about something that shook me to the very core of my being, whether it be floxing or being widowed and because I do talk about those things they lose their power to hurt me. I release their hold over me by acknowledging them. Talking about the pain instead of burying it stops the symptathetic nervous system reaction to the tragedy and reinstates parasympathetic function again.

          But I don’t talk about those things all the time either. If either tragedy were all I could think about and all I ever brought up then I would be dealing with an obsession and would probably benefit from professional help. It is not a bad thing to get professional help in dealing with this tragedy in your life. But to say that that is the only type of support you need or that you need to be completely silent about what you are going through is wrong.

          Certainly, timing is important. You don’t want to be a wet blanket at every party. There are times you should put pain aside and enjoy the party. But there are also times you can and should lean on those who love you. Sorry, but that is their job. Love is an action word not just a feeling. If someone you loved was suffering through what you are going through you would support them. You are worthy of that same support. If they feel frustrated that you are still suffering three months later, ask them to consider how you must be feeling having to actually live with the suffering. Doctors who believe in FQAD say anything less than a year out is nothing. It is going to take awhile before you really feel like yourself again. You need to avail yourself of every support system you have. I believe talking about it with those who care for you is a critical part of healing. People who don’t have friends/family they confide in tend to have poorer parasympathetic nervous system function, which actually by itself can lead to chronic illnesses, poorer health outcomes and an increased risk of mortality from all causes. Those are facts.

          Who is to say a member of your family, God forbid, doesn’t end up with a chronic illness at some point? You will certainly be there for them. Maybe having learned of your journey will help them cope when their life takes a similar path.

          Take care of yourself. Ask for what you need. Some family members and friends will be better at supporting you than others. You’ll never know who is going to be there for you if you don’t open up to them and give them that chance to support you.

          Those are my thoughts.
          Ruth

        • Dee October 7, 2017 at 5:08 pm

          Ruth, you are scaring me. I get the impression by your post that we are forever plagued by FQ poisoning? I thought it was possible to “totally” recover I hope?????🙏🏻. Maybe I misunderstood but it concerned me that this condition will keep haunting us forever??

        • L October 7, 2017 at 5:43 pm

          yeah, that post got to me too. I believe some DO heal completely (and I have spoken to some who believe they have) and others can heal enough to be “almost back to normal.” Given time, I suspect you will too.

        • Dee October 7, 2017 at 5:59 pm

          L. I hope to heal completely soon too!! I know it takes time but I choose to have faith in healing! Thanks for your encouragement!

        • Ruth Young October 7, 2017 at 6:45 pm

          Dee,
          We do not actually know if it isn’t possible to totally recover from FQAD at the cellular level. Many many floxies have felt that they were 100% recovered and remain feeling 100%. Some felt they made it to 100% but relapsed and then did heal again.

          Some have lingering issues but nothing that keeps them from living full and productive lives. I am currently in that category.

          Some are permanently harmed to the point that their quality of life is severely affected even to the point of total disability, which sometimes is permanent– although I think maybe nothing is really permanent until we are dead so there is always hope.

          Although sometimes after a tendon rupture the repair is simply never going to be the same. Sometimes the damage to connective tissue and cartilage is beyond the ability of the body to repair it or surgical solutions to be effective.

          We all bear many scars just from having lived normal lives. I have a scar on my foot that will never go away from the time I jumped into a lake off a pier without realizing it was shallow and a concrete block was under the water. From that day forward my foot never looked the same as it did before. The pain went away but the scar remains.

          Getting floxed is probably like that even when we feel quite good and mostly recovered. Will we ever be exactly the same as if it never happened? No. Whether the scars be emotional or on our mitochondria or our microbiome or our genes, the scars are there. Not saying everyone has all those scars or the same scars.

          Can we heal? I believe we can, we probably all can to some extent and for the really tough cases the work being done by people like Sterling Hill in the fields of genetics and microbiology will probably eventually bring healing to many who have been suffering for years or even decades.

          The body has an amazing capacity to heal. We have neural plasticity, which means our nervous systems want to be balanced. But that process can take years. It gets easier as time goes on, but we remain symptomatic as it continues. I am nearing four years out and it is still continuing.

          I am in a relapse now. Yesterday was rough. I couldn’t be productive at all. But I was able to relax and even sleep some so I took that as a blessing. Maybe God was telling me to slow down and take it easy a little. I actually have more resilience in many ways now than I did preflox. I’m not magnesium deficient now. I take a lot of marvelous supplements that support my mitochondria. I meditate and take time to relax in ways I didn’t before. I have been able to take on more professionally than I could have handled preflox. So sometimes I push too hard because I am not getting depressed from being so busy– that is what would have happened before. But my nervous system is still fragile and probably was prior to this happening so sometimes a relapse makes me go back to the very habits that give me the greater resilience– meditation and rest.

          Nobody wants to get floxed, but you can adapt and learn to live with the changes to your body and nervous system. Also, less than a year out is not enough time to get past the worst of it– not for most people. It does get easier.

          But I am also working through the possibility that this happening to me is going to shorten my life. Stress ages us– it shortens the telomeres on our chromosomes and there is no way to reverse that. What did years of being tipped toward fight or flight do to my telomeres? What really is the state of my body on the cellular level? I don’t think enough time has passed for us to really know the long term effects for floxies. But I also know beyond a shadow of a doubt that worrying about it WILL cause me health issues.

          If anything, knowing that my time might be shorter and seeing that as a middle aged person I have more behind me than ahead of me in any case, I find I treasure each day more. I want to use my time well. Sometimes using it well actually means stopping to just be, and not worrying about accomplishing anything. I enjoy pondering that paradox. I am enjoying being restored to who I really am.

          But I cannot say that for me it all went away. I can say that it doesn’t matter that it didn’t. Even when I was a lot worse than I am now I simply felt gratitude that my life as I knew it was not completely taken from me. I would have been ok had it never gotten better after month five. I am really glad it did continue to get better! But I could still have lived my life with the issues I had going on then.

          The best advice I can give you is to stop worrying about every little symptom and whether it will go away or whether all of this will be permanent. Instead, live in this moment, right now, and focus on whatever is good, whatever blessings you have.

          I did not overcome FQ toxicity because I healed all the way to 100%. I overcame it because I learned to cope, I practiced gratitude every day and I trusted in God to work this, as everything else in my life, out for my eternal good. He has not failed to do that.

          Don’t give up hope that 100% healing is possible. It might be. I used to have a numb place on my right foot from hurting it ice skating in 1983. I got the feeling back there about a year after I got floxed. I took things to help support my body and maybe heal nerve damage if I had any and suddenly a thirty plus year injury reversed. So who knows what might happen regarding flox damage? But don’t put your life on hold until it happens.
          Ruth

        • Dee October 8, 2017 at 6:28 am

          Thank you Ruth. I will try my best not to worry about all my symptoms and keep looking forward. It is hard but I know the truth in what you are saying. I’m sure you understand how we floxies carry on about everything that is happening in our bodies. It is so scary but I will try hard to think positive and hope and pray for healing. Thank you for your kind and helpful words.

        • Deb October 7, 2017 at 5:48 pm

          L
          When did you feel like you turned a corner and were on the upward mend?

        • L October 7, 2017 at 5:58 pm

          well, it’s funny. it becomes very subjective. After about 1 1/2 years I thought I was almost back to normal. Then I got better, and realized in retrospect I had still been pretty bad. It’s like I forgot how much energy I had before it happened. The stuff I am left with now, is likely permanent, since it’s damage to my vision and peripheral neuropathy (and other nerve damage, like olfactory. but even that is gone way more than before. IT still comes back though—phantom smells.) I am 2 years 8 months post Cipro and while I may not be quite as energetic as before, I am back to doing most things I did before. (well, except eating different foods and taking way more supplements.) I have insomnia maybe once every couple weeks. I can still get anxious and stressed more than I used to, but it is no longer a constant.

  23. Deb October 7, 2017 at 5:23 pm Reply

    Ruth,
    You are such a darling!! Thanks so much for your support and guidance!! I’ve never met you and I feel like I know you! Thanks for reminding me to open up so people can support me. I think it’s hard for people to see that I don’t feel well since I work and I don’t have any noticeable ailments. I really don’t like people thinking I’m not well. I do have muscle weakness but it doesn’t show. But it makes activities more difficult.

    I just read your post to Dee, and your strength in dealing with your symptoms is amazing! I can identify with what you said there is no refuge–the symptoms are everywhere we go. But sometimes I, like you, feel better at work. You reminded me to talk back to my worry in a logical way. I can do that sometimes but I’m still working on that. While I am working on that, it’s nice to have support from others.

    Oh, by the way, did you stop using fluoridated water in your recovery? And I noticed in some of your earlier posts that you think functional minerals (calcium, magnesium and zinc) are important in recovery. Do you still think so?

    Thanks much!
    Hugs
    Deb

    • Dee October 7, 2017 at 6:23 pm Reply

      Deb, you are really lucky you can go to work!! That must help a lot in keeping your mind off of this nightmare! Being a high school PE teacher wasn’t going to happen for me so I sit around my house a lot thinking about this crazy stuff!! By the way you never mentioned if you were still having dizziness??

      • Deb October 9, 2017 at 7:12 am Reply

        Dee,
        I have the tight scalp/tingling and the muscle weakness and anxiety. I will be happy when I can take all my supplements. Dealing with the fear is a challenge and I work at it and have more success some times than at others. I am very happy I can work. It does help, but if I had a physically demanding job it would be difficult. Again, I want to be well so bad!! Let’s continue to keep the faith that we will make progress and be well soon!!

        • Dee October 9, 2017 at 4:48 pm

          Deb, keeping the faith!! Hope you, Helena and I all recover and heal soon!! Let’s hang in there and keep believing in our wellness!!!!

    • Ruth Young October 7, 2017 at 7:02 pm Reply

      Deb,
      I don’t 100% avoid fluoride, but I switched to a non-fluoride toothpaste and only drink tap water if I am out at a restaurant. I drink Dasani mostly now. I was doing that anyway ever since I got a nasty parasite from Milwaukee’s city water in the early 1990’s. Cryptosporidium: you know what it is if you live in a third world country or Milwaukee, Wisconsin. Ugh.

      I still think functional minerals are the key. I think without enough magnesium you really are vulnerable to the debilitating tendon, cartilage and connective tissue issues. Also nerve issues. It’s just so important, along with calcium and zinc and other trace minerals. Our functional minerals help stabilize and balance our moods too.

      I took Cipro in the 1980’s, seemed to recover but went on to suffer debilitating depression for decades (on and off) but I don’t have it now even in super stressful situations that would have brought it on before. Hmmmm….

      I am so ticked off that maybe I went decades thinking I had a mental illness when really what I had was a severe functional mineral deficiency. Probably a screwed up microbiome too. My diet as a young adult didn’t really do much to fix either– but the Cipro chelating my minerals and killing my healthy flora was a kick in the pants I did not need. I am trying not to be mad about it, but geez– maybe my whole life would have been different if I had never taken Cipro and had just eaten more yogurt instead of cupcakes. But I know you never win playing the “what if” game. It is what it is.

      But yes, I do believe it it is absolutely critical for floxies to push functional minerals in whatever way they safely can.
      Ruth

      • Phillip October 11, 2017 at 10:38 pm Reply

        Hi Ruth, do you still continue with an organic diet, or have you started resorting to regular foods? If yes, how long did it take for you to start incorporating regular foods?

        • Ruth Young October 12, 2017 at 4:57 am

          Phillip,
          I never went all organic. I cut out sugar and treats 100% for six months. No sweets. Then one of the girls on our fireworks crew setting up for Milwaukee’s big show had a birthday, which we celebrated with cupcakes. They looked good so I had one. Once I was off the wagon I couldn’t get back on.

          Sugar is just nothing but poison. If you can cut that out permanently good for you. I wish I could.

          The only time my diet made a huge difference in how I felt was during my month long severe relapse last year. I think I had adrenal fatigue. My job was stressful beyond the telling of it. During that time a very healthy diet helped me to be functional. One small slip and my anxiety etc… became completely intolerable again. I did an FSM protocol to quiet the adrenals– to let them rest– and after that I got better within a couple weeks. Plus, I withdrew from the floxie community because I just had too much on my plate already.

          You have to do what your body is telling you it needs. Except the sugar thing. Mine tells me it needs sugar all the time but it’s a lie. Lately, I have been doing better at not listening to that lie.

          As I have read more on glyphosate I do try to avoid wheat as much as possible. They spray Round Up all over the crops to make it all ready to harvest at the same time. You can’t get it out. Non-GMO wheat is not safe. Of course it is not GMO. Most GMO crops are that way so they don’t get killed by Round Up. The farmers are essentially killing the wheat with it. Cheerios has absolutely astronomical amounts of glyphosate in it. Glyphosate was a failed antibiotic. It causes leaky gut. True, animals don’t have the shikimate pathway, but our healthy gut bacteria does use it.

          So at this point in my life I have no reason to ever eat a bowl of breakfast cereal again.

          I actually started out eating everything I wanted except sugar, then put sugar back in (dumb move) but started to cut back on wheat and buy more organic veggies/fruits (smart moves.)

          You do not have to have a perfect diet to heal. Your body dealt with a lot of crap before getting floxed and it will be able to do so again. As I have made positive changes they are not out of fear that I will relapse or not heal if I eat that but rather a desire to take better care of my body. Not because I have to. Because I want to. That attitude is helping me walk away from donuts and cookies in the faculty room or in the coffee time room after church much better than the fear ever did. Once fear faded I went back to sugar.

          I have never worried about antibiotics in meat. If there is any (it is illegal to take animals to slaughter with antibiotics in their systems) it is a subclinical dose. Plus, freezing and cooking can’t be good for the stability of those drug molecules. I just don’t buy into that being a reason to have fear. I have never reacted to any meat.

          That being said I try to get the highest quality meat possible because those animals were raised more humanely so that is the right choice. Also, if they have to pump them full of antibiotics there is a reason– their living conditions are filthy! As a floxie I fear food poisoning a lot more than I fear a tiny trace of Cipro in my chicken, which wouldn’t be enough to do anything to me anyway. But food poisoning? With our compromised microbiomes we are at a huge risk. Maybe when people react to low quality meat that was pumped full of antibiotics it is because that meat is so contaminated with bacteria that any tiny lapse in cooking time or temperature is going to result in some of it remaining on the food. A person with a normal microbiome would probably not notice. We would. And an influx of bad bacteria can cause disturbances in mood as well as the typical diarrhea and stomach aches. What if the bad bacteria create an unfavorable environment for lactobacillus? Would that feel like you got floxed again? It could. A lack of lactobacillus can cause anxiety and depression.

          So those are my thoughts. I think the best thing is not to live in fear but to make healthy choices because they are ethical and because you care about your body.
          Ruth

  24. Betty October 10, 2017 at 4:38 am Reply

    Hi Ruth
    My name’s Betty,I took 3 pills of Cipro (500mg.each)this july,and now I have a lot of symproms(neuropathy,joints muscles and tendons pain,tintinnus,brain fog and Gi problems).
    I’ve tried the Mitoq but after the second day(1 pill a day) I had a painfull thick heart….I suffer with arithmias before floxing ….and I notice the Mitoq give me tachicardia and this strange symptom….The magnesium give me arithmia too….Can you give me some advice?
    The magnesium threonate is safe or it gives agitation?thans for your attention.

    • Ruth Young October 12, 2017 at 11:09 am Reply

      Betty,
      You need to talk to your cardiologist about the symptoms with your heart post MitoQ rather than with a stranger with minimal medical training and no acces to your complete medical history.

      I understand, of course, why you have done this. The medical community hurt you very badly and now denies that anything happened. Well, not all doctors are useless. If yours is then keep trying until you find a good one.

      You may want to contact Sterling Hill (scroll through comments above for info about her and her contact info.) After you get genetic testing she will look at that info and probably be able to tell you why you are reacting to CoQ10 (MitoQ is CoQ10 in a very accessible form.) She will provide you with a report that you then take to your practitioner to guide your treatment. If you can’t find an MD with required knowledge to use her report (or at least the willingness to learn) she can give you a couple names.

      We are all different. All floxiehope provides is anecdotal evidence of what helped some people. I believe that even anecdotal evidence (though the weakest form of scientific evidence) is important to solving why people get floxed and how to help them. But it is a small piece of a puzzle and to base your treatment entirely on anecdotal evidence of what worked for someone else is risky to say the least.

      You need to talk to your doctor.

      I can tell you that research has shown people with problems with the CYP450 pathway can be harmed by MitoQ. I would start with tests of your liver function. See your doctor for these.

      People with kidney disease should never supplement magnesium. FQ’s are known to cause kidney problems. You need to get tests done of your kidney function. I had these tests done periodically in the early stages.

      Most people do heal from getting floxed with time. This is true. But some people do have decreased functioning of vital organ systems– sometimes permanently, sometimes temporarily– but you need to know what is going on in your body.

      Instead of asking other floxies what might be going on in your body, see your doctor and actually find out.

      If everything checks out I would still stay away from the MitoQ but it is quite possible the reaction to magnesium was just a paradoxical response brought on because of loss of GABA receptors. The part of your nervous system that helps you relax is not responding well to its main neurotransmitter. When it can’t give you relaxation it gives you the opposite. Maybe. That is maybe what is going on.

      The only way to know is get tests done of basic body systems and get genetic testing done and see what supplements come up as a no-no for you. Even that is not 100%. That science is in its infancy. But it is a whole lot better than asking around hoping your body is the same as someone else’s body and will respond the same way. MitoQ helped my heart– I know it did. I had greatly improved cardiovascular endurance while on MitoQ. But what helps one person may do nothing for another or could even do great harm.

      Every floxie is going to have a natural tendency to promote what worked for them. That’s because they are not objective medical professionals. You need to find one of those.
      Ruth

      • Deb October 12, 2017 at 3:11 pm Reply

        Ruth,
        What medical tests did you have done–I know you did the liver and kidney function test. Any others that you would recommend?

        • Ruth Young October 12, 2017 at 5:23 pm

          Deb,
          In the ER one of the times I went in the first weeks they did an EKG to rule out cardiac issues and an MRI or some kind of imaging of my brain to rule out a stroke. I was having symptoms similar to both. Everything looked fine. They didn’t seem to think they would find anything — seemed to think it was all in my head– but they checked to rule out real and severe issues. Probably a good idea.

          It is easy to start chalking everything up to just some weird flox symptom and deciding you’re really fine. Most of the time that is probably true. But not always. It would be easy to have a serious health problem go untreated thinking it was just a flox symptom.

          But I wonder even the point of cancer screenings for myself now. If I found it I would not treat it. You can’t do chemo after your mitochondria have already been harmed by floxing and get away without some serious and probably life long side effects. For almost any serious health issue I don’t think I could trust doctors and hospitals enough to be helpless in their care. Too great a chance of being floxed again. I am considering getting a DNR order in my chart. I would be better off dead than floxed again.

          Right now I am doing pretty well most of the time. I am happy about that, but I honestly don’t think I could make it through getting floxed again. I just don’t have it in me. So for me, I really don’t have much use for tests to reveal serious issues because I wouldn’t treat them. Most medications are just horrible with a million side effects. What can a person with a floxed body really do but just try to take good care of themselves?

          But if something serious happens I think it would be far better to just go gentle into that good night. I feel like I still struggle with the aftermath of what I went through. I have a chance now at good mental health with some time to process it all and a less stressful job. But if I had to start all over going through that hell, I am not sure I could ever put myself back together. Maybe it is a faithless attitude but it’s where I’m at in trying to come to terms with this and going through yet another relapse the end of last week.
          Ruth

        • L October 12, 2017 at 5:52 pm

          You said “But I wonder even the point of cancer screenings for myself now. If I found it I would not treat it.” I am with you on that! At least not conventional treatment. I would do IVs of high dose C and others; ozone; etc. I no longer get mammograms —I do thermography. Don’t need the added radiation from mammos plus if you have a cancer the squishing could spread it. When I was getting IVs for the Cipro, half the patients there had cancer. Some were using it to undo the harm from chemo and others were SOLELY using IVs and ozone. One man had anal cancer and got rid of it completely using the natural treatments.

        • Ruth Young October 12, 2017 at 7:03 pm

          L,
          I don’t want to make it seem like I embrace death or want to die. I love my life! Even more so now that I am feeling more like myself. I feel like I can fully live it again, because even during a relapse I still feel like me. Uncomfortable, but fully myself. Hard to explain. I don’t want to give it all up now that I have it back.

          But I can’t even put into words how disallusioned I am with modern medicine. Science is going in amazing directions with genetics and studies showing connections between genetics and nutrition and genetics and our microbiome. The importance of probiotics is just beginning to be understood. This could be a golden era for patients and physicians alike. Instead the greed of the pharmaceutical companies and the complicity of doctors and the FDA with them in their greed is holding us back in the Stone Age, figuratively speaking. It’s horrible.

          At the same time, look at how many naturopaths have been found dead under mysterious circumstances. No proof that there is a connection– but it just seems like too great a coincidence. The things you mention actually have a chance of curing cancer. I would never have thought the medical community would not want a cure for cancer, but it sure looks that way. It is all about profits for the drug companies. I do not want myself placed into their hands ever again.

          Seven Cipro not only caused me weakness, muscle wasting, tendon problems, insomnia, broken teeth, hair loss, sagging skin, anxiety, intense heart burn, tinnitus, muscle twitching and cramps, neuropathy and a host of other problems too numerous to list, those seven pills literally shattered my sense of self, of who I was as a person. It is like those seven pills were a bomb that blew my soul, mind and body apart. It felt like they were connected by a thread and that I was practically splintered.

          It felt like those seven Cipro threw me up and out of this world so that I was perched above it like a square peg over a round hole, able to observe but not truly participate. I could be tortured as I watched from a distance but my old life was not accessible to me even as I went through the motions of living it. It was over a year before I really felt like I was coming back together and coming down out of whatever horrible place I had been trapped in, back into the real world. Even though my muscles were stronger and my tendons mostly healed, I still felt splintered until over a year had passed.

          Then at two years I experienced joy and normal emotions came flooding back. I had forgotten what it was like to have normal emotions.

          At three years aspects of my personality came back that I didn’t know were gone. Again emotions became deeper and I remembered that that is how I used to experience them.

          During those intervening years I had times I was not myself and had to try to explain behavior that was just not acceptable but I didn’t really understand where it came from. I had anger that would flash to the surface and it was like having roaring lions inside of me wanting to burst free and maul everyone in my sight.

          I had anxiety and fear that came out of nowhere and for no reason. How do you reason yourself out of an emotion that came out of nowhere and you don’t even know why you feel it?

          It’s like I wasn’t even sane.

          But somehow I managed to keep working and even advance in my career and do things like write and arrange music and help other Floxies.

          But now that symptoms are waning and I am feeling restored and whole how could I ever trust the people who gave me those pills, who set that bomb off inside of me, and then didn’t even care? The ER docs I saw were openly hostile for the most part and ridiculed me. How could I ever trust them again?

          It’s unchristian of me, but I want to tell them to simply go to hell. They sent me there so that seems fair. I forgot to mention that I began my scary Cipro journey with hallucinations that I was being dragged down to hell by demons every time I even came close to falling asleep. Or the fact that every ten nights or so for a couple years I was literally tortured every time I tried to relax, much less sleep.

          The medical community is sentencing innocent people to torture via pharmaceutical and I am supposed to trust them with the care of my body? No way. I would rather go home and be with Jesus than have the Cipro bomb blow me apart again. It’s only by His grace I am mostly put back together.
          Ruth

        • L October 12, 2017 at 7:27 pm

          Preach! I am so with you on all of that and it was just 3 cipro that changed life as I knew it. Between the Unbelievable pain , the gasping for breath, the damaged vision, the mental nightmares, the huge weight loss and dozens have f other things…all of which defies description, I never imagined anyone could feel like that and still be alive. It is astounding that I am still alive. And I I have almost no faith in allopathy and less in pharmaceuticals. All about money I am sick of the constant drum beat to get vaccines, the October pink sea of cancer ribbons and so much money going to pharma companies that are not interested in cures but only customers. I just wish naturopaths and healthy, safe natural cures were covered by insurance.

    • L October 12, 2017 at 11:39 am Reply

      I would urge you to try to find an integrative cardiologist. They do exist! The first cardiologist I saw threw me under the bus just as the other MDs did. (can’t be the Cipro, blah blah blah.) I now have a Harvard trained integrative cardiologist who believed me from the get go and who always first tries natural remedies.

      • Deb October 12, 2017 at 2:16 pm Reply

        L
        Do you take statins? I did before the toxicity but I’m not taking it now (Pravastatin).

        • L October 12, 2017 at 2:18 pm

          No I didn’t not. But you may want to add coq10. Or ubiquionol if you are over 40

      • Deb October 12, 2017 at 3:28 pm Reply

        L
        My cardiologist said the same thing–can’t be the Levaquin. Another doctor said the same thing. Surely they know the FDA has a 43 page warning for the dangers of Cipro. I wish I had known about those 43 pages before I took Levaquin. It’s hard to believe the medical community which I trusted implicitly would be doing this.

        How did you pull together all your medical resources? I’m in Atlanta and I don’t see any integrative cardiologists. Were you able to find an integrative neurologist? My PCP (allopathic not integrative) was the one who said the problem could be the Levaquin, but her only suggestion was it takes time. I suppose I will have to find some new medical personnel on my team. I will be glad when this FQ toxicity isn’t on my mind most of the time and when I feel better.

        Also I think you said you do some acting. I don’t act but do follow community theatre in the area. Have you been able to go back to acting?

        Thanks for all your help today!!!

        • Dee October 13, 2017 at 9:22 am

          Deb. Just checking on you! Any improvement?? How is your anxiety, insomnia and dizziness?? I hope you are doing a little better! Hope you, Helrna and I start seeing a little light sometime soon!! Dee

        • Deb October 14, 2017 at 8:39 am

          Hey Dee,
          Thanks for checking. I went to a neurologist yesterday just to get his take on my symptoms, but he really didn’t have much to say. He said I checked out okay from the tests he did. He didn’t seem to know much about toxicity from Levaquin (same story I seem to get from doctors). I’m still trying to plow through my symptoms every day and try to stay as positive as I can through the process. Hope you have a good weekend!

        • Dee October 15, 2017 at 7:42 am

          Deb. Plowing through symptoms is a good way to put things! I feel like I am plowing through quick sand sometimes but like you try to remain positive!! My biggest challenge is insomnia and I can’t take anything to help me sleep as I had bad reaction to melatonin and LTheanine! Still struggling with anxiety, tinnutus, lack of appetite and pretty bad insomnia. My biggest worry is my GABA receptors and parasympathetic system repairing but as far as I know it takes time! I think Ruth, L and Tara you all had the same GABA issues more or less?? Any suggestions for the insomnia since I can’t take anything?? Hope healing comes soon for us🙏🏻

        • Dee October 15, 2017 at 8:49 am

          Ruth, L and Tara. My anxiety is starting to get out of control. I am about to crawl out of my skin. Any suggestions on how to deal with it?? I am trying to get through these symptoms on my own but this anxiety keeps getting worse and is starting to take me over. I am about 4 months out. God I hope this will settle down along with the insomnia!!

        • Deb October 15, 2017 at 3:54 pm

          Dee,
          I think L took something to sleep for a while at first. I think I mentioned I took 13 Ambien, and when I took it I didn’t know anything about FQ toxicity so I haven’t checked to see if it isn’t good to take after an adverse reaction. Have you checked your supplements to see if they could be contributing to the insomnia/anxiety? What about a very small dose of Benadryl (maybe 1/4 of a 25 mg tablet) to sleep? I would check and see if it’s contraindicated with FQ toxicity. It doesn’t help some people though.

          I am sorry your insomnia and anxiety are excessive right now. FQ anxiety isn’t like any anxiety I’ve ever experienced. I can’t understand why the manufacturers of these drugs don’t have a test for everyone who takes them to see if they will have adverse reactions. There are too many people suffering with adverse effects. And this is a lot to go through for having a sinus infection. But getting angry only adds to stress and it doesn’t help me.

          I will be sending you good thoughts for feeling better and healing. We don’t know how or when but it is going to get better for us.
          Let’s try to hold on to that.

        • L October 15, 2017 at 3:58 pm

          Yeah, I had taken the generic of ambien. I really wanted to stay away from any pharmaceuticals, but in addition to the horrific anxiety and insomnia, I also was gasping for every breath, so it was the only sleep I got at all. At first, even with the pill I only got 1 hour, but I think that was more because I was struggling to breathe. While I would never recommend anyone take a pharmaceutical for this, for me it was a lifesaver. I only stayed on until I got up to around 6 hours a night and then I slowly weaned myself off, so I could get used to “still sleeping.” I did that for a couple weeks and then I was able to sleep without any help at all, so again, for me, it was a lifesaver.

        • Dee October 15, 2017 at 4:13 pm

          Deb and L, thanks for your suggestions. I am truly scared to take anything to help me sleep after the melatonin which was a significant reaction increasing my anxiety, insomnia and even brought on severe tinnitus! Unbelievable to me!! L. How long were you only sleeping an hour before you improved??
          Getting a handle on my worry and anxiety is my other challenge that I am trying to work on! Thanks for the positive words! We are going to get through this!!

        • L October 15, 2017 at 4:48 pm

          I think it was a few weeks, but again, the breathing difficulty was responsible for much of that. Additionally, I had sense of being choked or strangled that would come and go, so a few times I would startle awake, thinking I was being choked—so that impacted the sleep too. (Seriously, this “adventure” has been beyond nightmarish.

          But before the sleeping pills I was not sleeping AT ALL. So, I think had I not had the other issues, it would have worked for me right away. I was only on them total for about two and half months if I am remembering correctly. The thing is, NOT sleeping is horrible for your health. So I figured I was harming myself even more by not doing anything. Again I am not a proponent of pharmaceuticals but these really helped, and I was a mess. I was severely floxed, and trying to deal with the breathing/choking issues, vision issues, extraordinary pain, huge weight drop, peripheral neuropathy and a dozen other things —-at that point I was willing to try anything. I had no side effects from the pills, and given my circumstances I would do it again.

        • Dee October 15, 2017 at 5:03 pm

          I don’t blame you for using sleeping pills at all and that is the reason I tried the melatonin and also the LTheanine to help me sleep but it backfired on me! So I don’t know how sleeping pills would affect me?? I doubt it is worth taking a chance. I do get about 5-6 hours of broken sleep which is keeping me half sane. I would just like to break that pattern of insomnia with a little help but I guess I have to let my body do it on it’s own! I guess I will eventually get there I hope!!

        • JP October 17, 2017 at 4:36 am

          Dee, are you still taking those homeopathics? I am starting to wonder if they are good for us at all. I tried Arnica 30c for another problem for two days and got awful anxiety from that. This is now the 2nd time this happens, Thuja caused me problems earlier. Maybe our floxed brain is too sensitive to these remedies?

        • Dee October 17, 2017 at 6:06 am

          JP. Yes I am still taking homeopathic remedies. I can’t tell you weather they are truly helping me or not as I am in the middle of my recovery??? Some symptoms have improved with me and some symptoms are about the same. Hard to know if they are doing me good or harm? I would like to believe they are helping me but that probably won’t be known unless I went off of them and noticed improvement and or getting worse? Since you have recovered then it is an obvious when you have a reaction to a new substance. I would think homeopathic remedies would be safe but you are right in the fact that we are floxed and might react differently??

        • Dee October 17, 2017 at 6:27 am

          JP. Did your anxiety from taking the Thuja finally go away for you?? Hopefully so!! How long did you have that anxiety for?? Did the arnica cause pretty severe anxiety and when you stopped it did it go away?

        • Dee October 17, 2017 at 7:04 am

          L or Ruth. I have a new symptom. Did either on of you get bad itching? It is mainly on my back and back of neck. It is pretty irritating and annoying. It feels like it is burning a little with warmth. Very itchy. If you did is there anything you did for it???

        • Ruth Young October 17, 2017 at 3:43 pm

          The itching is a form of neuropathy. I get it now and then, and have all the way along through this. I just try not to scratch.

        • Dee October 17, 2017 at 4:05 pm

          Ruth, it seems a little late to come on at 4 months but nothing surprises me with this stuff. Although I had switched from methyl B to B complex a few days ago and the itching started 2-3 days ago. I read that B complex can cause itching do went off of it for awhile. I will know probably in the next couple of days if the B caused it if it goes away. Could be the neuropathy also. This journey of symptoms is crazy!! Never a dull moment unfortunately!!!!!

        • Deb October 15, 2017 at 4:41 pm

          Dee,
          Have you thought about meditation for worry and anxiety. I am looking into a mindfulness class. But it doesn’t start until January, and I need it now. But I think Jon Kabat Zinn (who started mindfulness meditation) has CDs that you can listen to at home.

        • Dee October 15, 2017 at 4:57 pm

          Deb, Thanks! I will check into those CDs!!! I already have an app on my phone for meditating but can always use more!!

  25. Deb October 12, 2017 at 3:07 pm Reply

    L
    DId you ever use non organic oil of oregano. I can’t get organic until tomorrow.

    • JP October 17, 2017 at 5:09 am Reply

      Oregano has caused relapse in some, probably because it contains thujone which messes up GABA somehow.

      • Deb October 18, 2017 at 4:38 am Reply

        Hi JP,
        I didn’t have a reaction to the oil of oregano. It just isn’t strong enough to get rid of my respiratory infection.

  26. JP October 17, 2017 at 10:48 am Reply

    Dee. Our CNS our abnormally sensitive so anything is possible and some people are hypersensitive to homeopathics anyway, they get aggravations or so called proving symptoms from them. Which symptoms have improved for you?

    Yes I think the Thuja anxiety eventually went away, it took about 3 weeks. But after that there have been a couple of other incidents: first I tried an antihistamine (Zylox) which gave me bad anxiety for a few days. And now then this Arnica thing, that just started yesterday, I took it only for 2 couple of days, so I guess it might they a few days again to pass.

    It think Mueller doesn’t use these c potencies at all because he think they often cause aggravations. That’s why he uses the q potencies.

    • Dee October 17, 2017 at 11:13 am Reply

      JP. Yes Mueller used q potencies and every 10 days I go up a dose. I am now on 9 q in my dose. The only thing in C potency is the homeopathic Cipro. I started at 30 c and went up every 10 days to 36c. I then went back to 30c and start up over again up to 36c! The q potencies always keep moving up. I only take 5. NatMur, RusTox, Byronna, arsenica and the Cipro. My improvements have been more energy, less muscle, tendon, joint issues. Less neuropathy. I am still having trouble with anxiety, insomnia, tinnutus, heart palpatations, lack of appetite. Mostly CNS issues and parasympathetic system not working. It was also very aggravated by taking half a mg of melatonin 4 weeks ago and very “slowly” calming down. Brain fog and light headed/dizzy also has remains a problem. I hope that will all settle down and clear up with time!!!

    • Dee October 17, 2017 at 11:32 am Reply

      JP. How long did it take for all your anxiety to get at least tolerable? Did you have insomnia?

      • JP October 17, 2017 at 11:58 am Reply

        Maybe about 3-4 months. I was lucky to not to have much insomnia.

        • Dee October 17, 2017 at 12:02 pm

          JP. I thought your main symptoms were anxiety? That sounds pretty good that it got better in 3-4 months!! Did you have a lot of muscle, joint, tendon issues or was it mostly CNS? Do you feel you recovered pretty quickly??

      • JP October 17, 2017 at 12:31 pm Reply

        Well the worst, acute, the most intolerable phase lasted that long but it took much longer to get much better in that regard. So I can’t say I recovered quickly, only that the worst phase wasn’t very long. It was mostly CNS back then, all the tendon and joint mess started years later when I was re-floxed somehow like I told earlier.

        • Dee October 17, 2017 at 12:44 pm

          JP. That sounds like a pretty common story!! I am 4 months out and hoping for some turnaround on improvement!! I hope I get through this real bad phase soon and begin to improve!! I am really sorry you got hit with the muscle/tendon damage years later! That is scary to think it can hit you again like that! Do you have any idea what caused the relapse?

        • JP October 17, 2017 at 12:47 pm

          The only thing I can think of is an Ayurvedic herbal supplement that I took at that time. But was it really that or not, I will never know…

        • Dee October 17, 2017 at 1:54 pm

          JP. That is a shame that you had that reaction to only an herbal remedy if that is the case. Are you getting any more mobility with time or have you given up on that getting better? I am sorry you had such a bad reaction to cause so much damage. I’m sure it is hard for you to wrap your head around! May I ask how old you were when you first got floxed? How many pills did you take? I hope you are maybe getting stronger with time!!??

        • JP October 17, 2017 at 2:00 pm

          I was getting a bit better until I took homeopathics last summer – my feet relapsed which is really frustrating because I have no idea how to undo what happened. Maybe in time I will get back where I was. I was 30 years old, took 2 pills.

        • Dee October 17, 2017 at 2:15 pm

          JP. If you were getting better then you can do it again!!! I have heard that ozone IVs have helped a lot of people pull out of serious muscle/tendon issues? Have you tried those? And wow you were young!! I sure hope you can get up and moving again soon!!

        • Dee October 17, 2017 at 2:22 pm

          JP. You must be extremely sensitive to everything and anything. Did you have a Doctor oversee your homeopathic treatment??

        • JP October 17, 2017 at 2:18 pm

          Yes I hope it will happen again, I guess it will… it just seems to happen veeeery slowly. I tried rectal ozone therapy when I was still walking – that just made my neuropathy worse for a couple of weeks.

        • Dee October 17, 2017 at 2:25 pm

          JP. I have never heard of rectal ozone?? Maybe consider trying the ozone IV for a few treatments??

  27. JP October 17, 2017 at 10:49 am Reply

    Ooops my antihistamine was Zyxal.

  28. JP October 17, 2017 at 11:35 pm Reply

    Dee, there was no homeopath (doctors don’t do homeopathy here and btw, even Mueller is not a medical doctor) this time, I just tried this Arnica protocol by myself. i thought it would be fine because I had taken the same remedy before but obviously it wasn’t. But anyway, even professional homeopath can ruin things like happened with me last summer.

    • Dee October 18, 2017 at 6:29 am Reply

      JP. That is a little scary to think that homeopathic medicine might be harming me? I hope it has been safe for me so far? I have been on the same remedies other than dose change for quite sometime so am hoping as time goes on they continue to help and not cause more reaction? It is hard to know since these remedies have been ongoing for about 3 in a half months now. I don’t know how much you know about homeopathic medicine but I would hope these are helping me and not doing more harm. It now is concerning me a little bit??

  29. Deb October 18, 2017 at 4:37 am Reply

    Ruth,
    What did you take when you got a respiratory infection after the adverse reaction to Cipro. I have been taking Oil of Oregano for a few days and it’s helping but I need something more I am having a lot of chest congestion and coughing. I am planning to talk to an herbalist. I’m scared of an antibiotic. Thanks for your suggestions.

    • Ruth Young October 18, 2017 at 5:19 am Reply

      Deb,
      For sinus infections I try Floragen first now. It is a probiotic often used as an anti-fungal. Most sinus infections are Candida.

      For bronchitis I would not do an antibiotic because the FDA has even acknowledged that bronchitis usually clears up on its own, even if it is bacterial. The exception would be if you have COPD. Then you may not have a choice.

      Colloidal silver could maybe help. I have been trying not to have to use it– I would rather build up healthy flora than risk losing any.

      You could try thieves oil. It is an essential oil. Put a drop on the bottom of each foot, wait an hour, then wash it off. That’s what I do when I feel absolutely anything coming on.

      Sovereign Laboratories Colostrum works for me in fighting off kid germs. I take a bunch if I feel anything coming on.

      This does not mean that any of that will work for you or is even guaranteed to be safe for you. But it is what I do.

      When I tried antibiotics for my ear and sinus troubles in 2015 I ended up wishing I hadn’t. Definitely made the situation initially better but soon after ten times worse. I had a constantly runny nose, as bad as a bad bad cold, for about three months straight with no let up. My advice is to do everything in your power to avoid the antibiotics.
      Ruth

    • Ruth Young October 18, 2017 at 5:22 am Reply

      Deb,
      Mucinex is safe for us. It’s active ingredient has a very low toxicity.

      NAC is great for chest congestion. Take it with vitamin C. My suggestion is to take it short term only to avoid a Herx reaction but some people take it longer and seem to be ok. I take it only as needed.
      Ruth

      • Deb October 18, 2017 at 5:41 am Reply

        Ruth,
        I just took 1/2 of a 400 mg mucinex, I will see what happens. I wanted to take one last night but I didn’t want to take it until I looked it up. It doesn’t look like it has fluoride in it. I didn’t have a bad reaction to the oil of oregano. Yay! I am coughing a lot at night for the last two nights. And I run a low fever (99.4-99.7) but it still makes me not feel as well. I just found out that we aren’t supposed to take any medications with fluoride in them. Thanks goodness I found out.

        Do you think colostrum would help me since I already have an infection?

        How long do you think it takes for immunity to get sort of back to normal?

        Thanks again.

        • Dee October 18, 2017 at 6:08 am

          Ruth, I know everyone is different but does the neurological itching usually get better with time? It is driving me crazy and I don’t know of anything you can put on it to settle it down unless you have a suggestion? I guess a lot of floxies experience this itching??

        • Ruth Young October 18, 2017 at 2:49 pm

          Dee,
          I think it will get better with time, but I really don’t have a good remedy for it.
          Ruth

        • Dee October 18, 2017 at 4:35 pm

          Ruth. Thanks. Time seems to be the answer for everything! I guess you can’t escape that unfortunately!!!

        • Ruth Young October 18, 2017 at 6:24 pm

          Dee,
          Try spraying colloidal silver where it itches. I read topical colloidal silver helps with the nerve pain associated with shingles. It’s worth a try for your itch. It might do nothing, but then again, it might work, and topically it is quite safe.
          Ruth

        • Dee October 18, 2017 at 7:27 pm

          Thanks Ruth! I will try that! BUT where would I find that product???

        • Ruth Young October 19, 2017 at 3:55 am

          Dee,
          I use ResultsRNA colloidal silver. It is available on Amazon or directly through the company. It is the only one I would trust to take internally, and I have used it that way for a sore throat. Be aware that the FDA says colloidal silver is never to be taken internally. If it does not stop your itch (which it may not, it isn’t a long shot) it is a really great product if you get a cut or something that you don’t want to get infected.
          Ruth

        • Ruth Young October 19, 2017 at 3:56 am

          I meant to say it is a long shot. My phone just adds stuff now instead of just autocorrecting. Very annoying. It constantly changes and adds words. Ugh.

        • Dee October 19, 2017 at 5:39 am

          Thanks Ruth! Can you take it internally for cold, sore throat, etc.??

        • Ruth Young October 19, 2017 at 2:18 pm

          Dee,
          ResultsRNA says you can take their formulas internally and they have a bunch of research to back that up. The FDA says colloidal silver is never safe taken internally, and we know how spot on The your are about so many things. (Yeah right) I do sometimes use ResultsRNA colloidal silver internally but not every day as they suggest.
          Ruth

        • Dee October 19, 2017 at 2:36 pm

          Ruth. Sounds like a good thing to have around!! Do you feel it has been a good remedy for a cold or cough?? I am not looking forward to this winter as I worry about getting sick while recovering. I just want to be armed with treatments that will get me through the flu season! Any suggestions of remedies you used for cold, cough flu? Did you ever get a fever? I heard it was ok to take Tylenol? I pray I don’t get sick but even more so a infection like sinus, ear or lung!!! I don’t want to have to take an antibiotic!!! Although I read most floxies do ok on Z pac? I don’t want to find out!!!

        • Ruth Young October 19, 2017 at 3:23 pm

          Dee,
          I found colloidal silver to be helpful. Colostrum from Sovereign Laboratories helps as well as Thieves Oil, a few drops on the bottoms of my feet (I wash it off in about an hour, by which time all the crap is draining and I feel great.)

          Antibiotics should be reserved for if you are dying. That is my thought after taking them two years ago and ending up with what felt like a three month long, never let up for a second, very severe head cold.

          Through all I have suffered post flox I never was suicidal until I got into the third month of my nose running like a faucet continuously all day and all night long. Dr. Toth thinks it was Candida overgrowth that caused it. All I know is that whatever happened the antibiotics caused it, because I had had a sinus infection. I know what that feels like, but after the antibiotic I just had completely blocked sinuses with garbage just flowing out of me 24/7.

          Avoid antibiotics if you can.
          Ruth

        • Ruth Young October 19, 2017 at 2:19 pm

          I mean “they are”– my phone constantly changes what I just typed!

  30. Deb October 18, 2017 at 4:59 am Reply

    Dee or JP,
    Any suggestions on what to take for a respiratory infection after FQ toxicity? I think the fluorquinolone lowered my immunity. Thanks!

    • Dee October 18, 2017 at 5:05 am Reply

      Deb. I’m sorry I can’t suggest any med for your chest congestion as I am like you brand new to this whole nightmare! Hopefully Ruth, L or JP have a suggestion since they have been through this already??? I sure hope you get relief soon!!!

      • Deb October 18, 2017 at 5:33 am Reply

        Dee,
        It is a nightmare!! Thanks for your suggestions.

      • L October 19, 2017 at 3:12 pm Reply

        Dee—no reply on your other comment. Just wanted to say I have reserarched ways to help prevent getting sick (and at the first sign I always use oil of oregano sublingually) but I have read the following are helpful. Elderberry (take if you get the flu. I always keep some onhand.) Astragalus —start 6 -8 weeks before flu season (which is before now) for full effect and take daily. green tea (I get the kind from another country because of fluoride in it); NAC (which also helps thin mucus) and finally olive leaf extract. You can look up any of these online for more info

        • Dee October 19, 2017 at 5:22 pm

          Thanks L for the suggestions on flu season care!! I hope to get through it without too much damage!!! Saying my prayers!!!

        • Deb October 20, 2017 at 2:03 pm

          Thanks L.

        • Deb October 20, 2017 at 2:10 pm

          L
          Did you find that your immunity was lowered after floxing? If so, how long did it take to get more normal?

    • Dee October 18, 2017 at 5:09 am Reply

      Deb. Maybe power up your Vit C and zinc would help some??

  31. Deb October 19, 2017 at 7:20 am Reply

    Ruth,
    Have you or any floxies you know ever used Maca powder. It is supposed to be a super food and I think is used in some Nutribullet smoothies? Thanks.

    • Dee October 19, 2017 at 7:35 am Reply

      Deb, Are you feeling any better?? I hope so!!!

      • Deb October 19, 2017 at 12:49 pm Reply

        Dee,
        I’m feeling a little better today. Thanks!

        • Dee October 19, 2017 at 1:35 pm

          Deb, Good!!!! So glad to hear!! I can only imagine getting sick is another stress to worry about along with all of this saga we are going through! What did you end up taking for it?? Anything?

    • Ruth Young October 19, 2017 at 2:21 pm Reply

      Deb,
      Sorry, no, I never tried that and I don’t know anyone who did.
      Ruth

    • L October 19, 2017 at 3:08 pm Reply

      I use it (maca) sometimes in my smoothies. It is an adaptogen and may help with anxiety

      • Deb October 20, 2017 at 2:33 pm Reply

        Hi L
        I think maca has the cruciferous vegetables in it and they are supposed to be helpful with FQ toxicity. Did you see any difference? Thanks.

  32. helena October 20, 2017 at 6:58 am Reply

    hey ruth. do you know anything about boron? someone recommended i take it to help with the pain? thanks~

    • Ruth Young October 20, 2017 at 7:19 am Reply

      Helena,
      I found a doctor on Facebook who treats floxies (he eventually wants to open his own practice dedicated to those harmed by medications) and he has every floxie he treats take boron. So I would say go for it, but of course read up on it first. Definitely something to look into. He also has all his patients avoid fluoridated tap water like the plague and start using non-fluoride toothpaste. Also, any medication that has fluoride would be a no-no for us. He uses the boron to help detox us from fluoride.

      I am not saying the only reason FQ’s harm us is that they contain fluoride. Lots of meds do! But when quinolones do damage they generally impair our ability to detox. Add to impaired detoxing a drug with fluoride in it and I think the chances of the fluoride in the med causing harm do increase.

      Still do your research but my gut says that he is on to something with the boron because it is supposed to help get rid of fluoride.
      Ruth

      • helena October 20, 2017 at 9:43 am Reply

        i guess i will try the boron. thanks for the information.
        im actually four months out now and i still have crawling tingling and burning sensations. The crawling is mostly in the head and sometimes on the face and the tingling and burning is usually around my legs. I also have twitching on my left shoulder and arm. Most of these symptoms come and go. Still have knee pain in my left leg.. I know my symptoms are mild but its just so frustrating. i guess i will just take my mag and some other supplements and hope that i will get better soon…pRaying that i get better at five months.

        • Deb October 20, 2017 at 2:32 pm

          Helena,
          What floxin did you take and how long.

        • helena October 20, 2017 at 3:01 pm

          hi deb. i took cipro for like a week and half. i didnt have any side effects while taking it ..or else i would have stopped. my symptoms appeared like a week later or so.. and now im stuck with all these weird stuff for the time being.. seems like i have a lot of stuff right?..just hoping for recovery soon! how about you? how are you doing?

        • Deb October 20, 2017 at 3:24 pm

          Hi Helena,
          I have had much lowered immunity. I have a sore throat now–not totally gone and worrisome. I had shakiness and there are days I don’t have that any more and my muscle weakness is better some days. I do have the head tingling and pressure which I got two months after I stopped. I am so so tired of this. It has been hard to be positive today, but I’ve done better a couple of days this week.

      • Deb October 20, 2017 at 2:13 pm Reply

        Ruth,
        I still am using some tap water to cook. Did you cook with tap water when you were recovering. I don’t have a fluoride filter.

        • Ruth Young October 20, 2017 at 6:40 pm

          Deb,
          I don’t cook with tap water but my husband does. I sometimes will drink tap water in restaurants too and I did that in the early stages too. Probably not the best thing but I never reacted to it. I did switch to a non-fluoride toothpaste right away.
          Ruth

      • Deb October 20, 2017 at 2:41 pm Reply

        Ruth,
        That really makes sense–the FQs harm our ability to detox. And that’s why we have to take it slow. Thanks.

  33. helena October 21, 2017 at 2:40 pm Reply

    Hello Ruth. I remembered you saying something about great lakes gelatin.. im actually thinking of trying it to help with my knee pain and trying to build muscles. Do you know which one you got? Do you think it will be useful?
    Thanks again.

    • Ruth Young October 21, 2017 at 3:27 pm Reply

      Helena,
      I get the green can as it is soluble in hot and cold beverages. There is no way to know whether you will be able to tolerate it or not. Hopefully, you can, as I do feel it helped me.
      Ruth

      • Helena October 21, 2017 at 4:03 pm Reply

        I actually got another version by vital collagen peptides .. I think I’m gonna try that since I already have it and eventually switch over. Thanks. I have anither question about vitamin b complex. Is it helpful? I actually started to take it but heard that vitamin b6 actually causes tingling and stopped ..since I have tingling I stopped but I just read somewhere that vitamin b is actually helpful ? Confused

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