Ruth’s Story – Cipro Toxicity

Ruth

 

Ruth asked me (Lisa) to post her most recent update at the beginning of her story because it’s important to have the most recent and relevant information first. Her journey has been long and there have been lots of ups and downs – as you can gather from all the iterations of her story below. Please take the time to read her entire story, as well as her comments below. Ruth has an enormous amount of insight and wisdom, and we both hope that her story will help you. 

August 5, 2019

Flox Healing Story Update

5 ½ Years Later

I realized the other day that I am now about five and half years out from getting floxed by Cipro in 2014. I also realized that my progress at this point has exceeded my expectations at the beginning, even at the time of writing my initial healing story. So I will start out with what is different now from even my latest updates:

  1. My sleep is a lot better and deeper and I stay asleep better. This may even be an improvement from right before I got floxed. I fall asleep faster. I dream more. I awake feeling well and refreshed most of the time.
  2. I am physically stronger. Whatever muscles I focus on in my workouts get significantly stronger in a short time. I mostly did upper body stuff this year, so my upper body is really really strong again. I’m also seeing great results increasing flexibility through lots and lots of stretching, like my body is more responsive to it now.
  3. I have a lot more stamina. I actually really enjoy putting in all nighters working fireworks shows. I love getting home at the time I usually wake up and then resting the next day and feeling myself recover quickly from working hard. If I get sore I don’t stay sore long. If I get tired I don’t stay tired. I not only can do more I can overdo it and bounce back quickly. It’s hard to explain, but feeling tired because of working multiple ten hour days setting up a big fireworks show and in the middle of that pulling two near all nighters for smaller shows actually produced what felt like a good kind of tired. I used to get this weird fatigue out of nowhere that was really debilitating and I hadn’t even been doing anything. When fireworks season finally slowed down after the 4th of July I felt a little lethargic for a few days and I realized that that was completely normal to feel that way and I also realized that that post fireworks season lethargy was still not like the crippling fatigue I had in the beginning after getting floxed. I remember how post flox cleaning one room of my house, just running the vacuum cleaner for a bit, made me feel like I had just hiked all day through the Baraboo bluffs. But this summer I did some much needed housework after fireworks season slowed down and not only did I not get tired doing it, I noticed that you get better results scrubbing stuff when you are really strong. My bathtub has never been so clean.
  4. I can read for pleasure now. I used to get intense anxiety concentrating on the printed page. I could read but it bothered me. It was hard to concentrate when my nervous system just wanted to run away. Reading was not fun. Then I progressed to where sometimes I could read for pleasure, other times I could not. Or I could read for a short time, but would have to stop. Now I can read pretty much all day, book after book, and still feel ok. And I can enjoy those adult coloring books, even the really complex pictures. Again, I can focus on detailed work and I can do it all day long and still feel just fine.
  5. I can type on the computer, surf the Internet on my phone or watch TV to my heart’s content and I don’t get that heart racing feeling, that feeling like I am on a roller coaster and half my face doesn’t go numb. I have a normal response to those things.
  6. I can concentrate on playing organ for a long time and I don’t end up with my skin burning and my face going numb. I can play complex pieces even when I am tired. More on this later.
  7. I can relax anytime I want. Sometimes I would get a paradoxical response that caused my heart to race and other unpleasant symptoms when I tried to relax. I could overcome it and get myself to relax but it would take hours sometimes to calm everything down. I can be totally relaxed within seconds now.
  8. I can have caffeine or alcohol with a completely normal response. I have alcohol twice a year, Christmas and Easter, a tiny bit. I have caffeine in dark chocolate and an occasional caffeinated tea. Just like preflox, having too much caffeine and then dropping it gives me a headache. So I try to avoid overdoing it with caffeine, but I avoided overdoing it with caffeine (and alcohol) prior to getting floxed too.
  9. I don’t get burning sensations on my skin anymore. I used to get burning on my arm after I ate dark chocolate. Then I would get burning on the tops of ears a lot on and off with no cause that I could find or it would happen because I was concentrating a long time on something. During a relapse it would be more intense and widespread or sometimes it would just be diffuse and not as painful but definitely I would feel a burning sensation like a mild sunburn. It was something I just lived with a lot of the time. I don’t notice it anymore.
  10. I can really enjoy life again. Twice recently I have been surprised to notice how much I was enjoying something I was doing. Once it was while doing some coloring in this book I use as a gratitude journal. I realized that I was just having so much fun with it that I felt exactly like I used to feel as a kid playing a game I liked during my summer vacation. I had forgotten what it was like to completely immerse myself in something I enjoyed, to the point of forgetting everything else. I had a similar experience while dropping and wiring shells for a fireworks show on a small lake. I was just really enjoying the process of putting the show together. Then later, when I volunteered to get in the water to help launch the pontoon with the fireworks on it, I realized I was really enjoying the feeling of the warmth of the lake water on my legs. I was the only crew member who went swimming while waiting for the show to go up, and I really thoroughly enjoyed that! I also went to a water park twice this summer and really enjoyed going down the slides that plunge you into deep water.

Really enjoyed” doesn’t even begin to describe or explain what being alive feels like to me today. It’s like I am a child again and experiencing everything for the first time and I am completely open to every new sensation. I had went to a water park the summer after I got floxed, and although I had fun, it simply felt better this summer. I enjoyed it more. That has been the process for me– first a return of the ability to do what I want to do, but it is not exactly the same, then over time a gradual return to how things used to be before this all happened.

When I was first floxed every moment was torture. The whole world was too stimulating and it felt like everything from a car driving by outside to turning on fluorescent lights inside was an actual life threatening attack. My ability to enjoy even nature was curtailed because it was too complex. Anything complex felt like an attack. I sometimes described what I experienced as “anxiety symptoms” but it was not anxiety like, “I’m worried about taking a test tomorrow in school,” it was more like, “I’m worried because I literally feel like I need to be able to crawl out of my own skin right now or I’m not gonna survive and I know that is irrational, but there is no place I can hide and it feels like everything I see, hear or experience is trying to tear me apart right now.”

The amazing thing is that as intense and horrible as being damaged was, healing from the nervous system damage is an equally intense experience. To not only have the energy and strength to pretty much do anything I want, plus the stamina to deal with mentally taxing activities as easily as I deal with physical ones is pretty amazing, but what I am trying to describe is more than that. The actual experience of doing normal things simply feels good and I had forgotten that life feels good. I have been making strides toward this for a long time, but the wonderful thing is every time I think I am all the way there, I get a little better, so I am continually surprised at the progress I am making.

A lot of people have had experiences similar to mine. I believe I had significant damage to my GABA-a receptors. People damaged by Benzodiazepines can relate very well to what I experienced. My heart breaks for them as it does for everyone harmed by fluoroquinolones, but especially for those of us who, for whatever reason, have suffered damage to our GABA system. When bodies cannot respond adequately to their most calming neurotransmitter, gamma amino butyric acid, life can become pretty much unlivable. I know that and every person with damage to their GABA system knows it, whether the damage came from fluorquinolones or Benzos or from traumatic brain injury. It’s so hard because you kind of lose yourself. You don’t have normal emotions, you don’t experience the world in the same way, and no one understands this. You feel like you are in an alien world where nothing feels quite right, but everyone else sees you standing right here, in the normal everyday world and they don’t get it. How can you be somewhere else? How can you be standing in the sunshine looking healthy and fine, but really be held somewhere apart, in a prison from which you can view the normal world but not really participate? How can they see that you are being tortured but you lost your ability to cry? How can they see that when your body appears to be at rest it isn’t because every cell of your being is vibrating and your heart just did that fluttery thing again, but you are good at pretending everything is normal?

I don’t have to pretend anymore. I feel normal again. I hope my story brings hope to those with similar experiences, similar damage. It is worth hanging on for healing, no matter how long it takes, because when it comes, it will take your breath away. If you have had similar horrible experiences as I had when being damaged, why would the healing, when it comes, not be similar? I don’t think my story is unique. There are a lot of people who went through what I did and worse. I don’t think the healing is unique either.

We just don’t hear as much about how amazing it is to come back from this type of damage. Part of it may be that words fail. I feel completely inadequate as a writer attempting to explain what it is like to get better from the brain injury I suffered from Cipro. I don’t really know how to say that parts of my personality have been restored and actually have anyone else really know what that feels like to have lost something you didn’t know you could lose, forget you lost it, and then get it back. It simply may be that few people are writing about recovery beyond to say they feel better because they don’t know how to describe it. Or perhaps they were so traumatized by the experience that they do not want to relive it, and telling in detail how they got better involves reliving a little bit of it. It involves remembering where they came from, and that can be hard.

But I do believe that the recovery I am experiencing is not rare, but probably very common. It may take many many years, but I believe that it’s possible for those experiencing my early symptoms to also experience my recovery symptoms. It gives me joy to think that some reading this may, a year or two down the road, say to themselves, “Well, damned if it isn’t just like she said it would be and I do feel happy just like a little kid again!” Sadly, I think one reason we don’t hear more recovery stories like this is that people give up and commit suicide. It can be so hard to hang on through torture. At first it is all the time torture, then it is torture that keeps coming back. You feel ok, and then another down cycle hits! You worry because you can’t make any plans because you never know when you are going to stop sleeping completely for three days and feel like total hell. I get that. I was there.

But I don’t have those worries now. I sleep well pretty much every night. I feel good pretty much every day. I do everything I did before I got floxed, which I had been doing for quite some time, but it feels completely normal now! I am exactly the person I was before I got floxed, if anything a little healthier because I take better care of myself now and found some anti-aging supplements I really like. I came out on the other side a little better than I was before and had some amazing experiences along the way. It’s not only possible, it is quite probable that the same will be true for others who experienced similar damage to mine. If they can hang on long enough.

The experience of healing is worth the hell of being damaged. That sounds trite and impossible, but for me it was the reality and my brain simply cannot be that unique. If I healed others can too. I know some of the newer SSRI’s are causing some pretty horrible, extended withdrawal symptoms also. I cannot speak from experience there, but I am a strong believer in neural plasticity and I believe our brains and nervous systems want to get back to how they functioned before they were damaged.

Here is my list of things I am still working on and what I am doing to help each one:

  1. When I do need to take antibiotics now I get symptoms I never got before. My teeth get a layer of plaque on them that nothing can remove. I am more prone to vaginosis. When I do get sick it seems like I stay sick longer. For the first one I found some probiotic lozenges from Life Extension that really helped. My naturopath sold me vaginal probiotics. She also told me to take Vitamin A when I get sick. It helped a little but my last upper respiratory illness still lasted three months including a really nasty secondary fungal infection in my sinuses. My best bet appears to be really trying to avoid getting sick in the first place. I work with little kids during the school year, so good luck with that! I’ve been healthy all summer though.
  2. Sometimes I feel like everything is overwhelming and I just want to sit and do nothing. A friend told me that was something she started dealing with while going through menopause so it may not be flox related. Sometimes I think it isn’t chemical and is just related to everything I went through in the past five and half years. I think after that experience wanting to stop the world for awhile and simply get off is a normal response. And whatever menopause is throwing at me it is milder than what a lot of women I know have experienced or are experiencing. I have a theory that menopause symptoms are worse if you are magnesium deficient. It’s only my theory. I just know that even prior to taking Cipro I had every symptom of a severe magnesium deficiency and I felt like crap, but chalked it up to normal aging. As I replaced magnesium lost to Cipro I actually was also addressing a long standing deficiency so part of my early healing journey involved finding out how much better my body works when it has magnesium to work with. I have no research to back this up, only my own experience of super painful periods and frequent night sweats and seeing those end after adding daily magnesium supplementation right after I got floxed.
  3. I can never really know whether or not I am 100% healed or whether I will have another relapse– not just a downturn– a relapse. This is something I guess every floxie lives with and I don’t know how many years out I will have to be before I stop waiting for the other shoe to drop. Right now I think it is unlikely but still possible that I would have another relapse. I could also step out into the street and get hit by a bus, but that knowledge does not keep me from taking walks in my neighborhood so I’m not going to stop living my life over the possibility of another relapse.
  4. I am working with a counselor, Dr. Jenni Swanson, to deal with PTSD over the whole flox experience. I now have the emotional capacity to really work through things and to actually feel much of what was blunted by the damage to my nervous system. Also, it was hard to work through this while I was simply in survival mode. Now that I feel better, I sometimes feel worse when the reality of the situation hits me. Once in awhile I have cried so hard that that brain squeezing feeling came back again, and my face felt kind of numb and droopy but it didn’t stop me from crying and as soon as I quit crying everything went back to normal immediately. Crying hard is part of the process of healing and it does help me feel better. For years I was lucky if I could squeeze out a few tears. My ability to have a good cry was really gone. Once in awhile I could cry pretty well, but not very often. Usually it would feel like someone was squeezing my brain and the tears would just stop. Then I would feel emotionless and numb. I can really cry now, but I also can really feel upset in a way I couldn’t for a long time. I could get angry, yes. But I could not grieve.
  5. I missed out on experiencing grief that should have been mine. In year two my sister’s 17 ½ year old cat died on her lap right in front of me while we were waiting for the vet to show up to euthanize him and I felt pretty much nothing. My father died in year three. We were never close. Did I feel no grief because he and I didn’t get along or because I was floxed? I will never know. Having missed that initial intense grief I seemed to have missed grief altogether in both of those instances. Life events happened around me but I did not fully live them, because of Cipro. In both of those instances a body that was worn out was returned to the earth and the life went back to God Who gave it. That is the normal way of this world, and grief is a normal response. Although grief over the death of a loved pet or a parent should be a normal part of life, too often modern medicine would medicate that away, and I believe that is wrong, that grief is something we have a right to experience as it is a part of living. Somehow, the damage Cipro did to my nervous system prevented me from experiencing normal grief at the normal time and I am rightfully angry about that.
  6. My left Achilles’ tendon gets tighter than my right one and sometimes it gets sore. That is the tendon that was really damaged by the Cipro and I feel like there might be some scar tissue there causing it to be tighter than normal. It does not stop me from doing anything really. It has to be from the Cipro because it is in the exact area where I kept feeling a thin layer of cells tearing when the damage was at its worst. I should probably get out my home ultrasound machine and do that area every day. I could massage the area, try to mobilize the tissues to help break up scar tissue. It’s just annoying to still have any physical reminder so all I really have been doing is to stretch it, which helps somewhat but is probably not enough to return the damaged area to 100%. My right ankle seems to be all the way back to normal though.
  7. My belly is still pretty big. There is a word for the excess cortisol causing a big belly that can happen when GABA receptors get damaged: Benzo Belly. I didn’t take a Benzo but I have the belly. It is getting a little better, but slowly. My face looks more normal now. At first I thought I looked like I had Cushing Disease, so I know my cortisol levels are getting more in line.
  8. I don’t get super brain playing the organ anymore. I used to be able to play like a freaky genius when my symptoms were flaring, especially Bach or anything with counterpoint. I would feel burning on my skin and numbness in my face so I knew something was not right, but it was worth it for the laser beam focus I had. And even better, the more fatigued I got the better I played. If I get really fatigued I play worse now. If I get sleepy I have to work hard to make my sleepy brain focus. I rarely got sleepy for years after I got floxed. Now I can be sleepy on Sunday morning and it can affect my playing. But I think my normal brain is a little sharper than my normal brain was pre-Cipro. Maybe it’s because I am not magnesium deficient now. I’m not really sure, but cognitively I am better than I was before. But that amazing experience of playing when my system was flooded with stress hormones while I was not actually nervous is completely gone, a thing of the past.
  9. Sometimes I feel sort of let down, like my sister describes happening to her after the last performance of a play when she was doing community theatre. For a long time all your energy is put into doing the play and after that last performance you feel a little lost. For so long all my energy was put into dealing with flox symptoms and healing from getting floxed, that now that I have healed I have that let down feeling. Like, “Now what?” I have had amazing experience after amazing experience and enjoyed myself so much this summer and then I get some time to myself when I don’t have a fireworks show and I don’t have any plans with friends and I just feel that let down feeling as if the curtain closed on the play I was in and I sit around asking, “Now what?” I think I expected all my life’s problems to be solved if I could just solve the flox problem. Nope. I still have other problems. No one warned me this would happen, but I think it was inevitable. I think if I ever lose the fifty pounds I really should lose I am going to feel the same way. I’ll be sitting there in my size eight (or ten, ten would be ok) jeans realizing my life is still not perfect and wondering what I should do next.

Here are things I have found out recently or tried recently. This is not medical advice. You would have to pay for medical advice so nothing you are finding on this site is ever medical advice. It’s more like reading an online review of a supplement or medication. You can find out how it worked for someone else, but you still have to go talk with your doctor (or some other qualified medical professional you trust) to determine if it is right for you.

  1. I am using a product called TRS from Coseva. It is a very small and very pure form of zeolite. It is a binder used for detoxing heavy metals and some other things. Any toxin with a positive charge can be bound by it and carried out of your body, according to the company that makes it. I buy it from Lizzy Lymon White on Facebook. She is a former Lyme patient who is doing well today. TRS helped her, but it was not the only thing she did to help herself recover from chronic Lyme Disease. I have known her for awhile on Facebook so I joined her TRS group and tried it. I think it helps me. I have a lot of amalgams. And I figured that since while my body was stuck in fight or flight detoxing was probably not a priority, it might be the right time for me to look into doing some detoxing. I didn’t focus on detox a lot right away, more on building up reserves of things like functional minerals and antioxidants. I was already feeling pretty good at the point I added TRS so I didn’t have too many problems from it. A brief flare of some flox symptoms, but then things calmed down. I have always believed that when our nervous systems heal we feel it. Anything that is good for our bodies can promote healing and can therefore cause a flare or a relapse or a temporary downturn. You have to do your research, talk to your doctor and make as informed a decision as you can, always going very slowly with anything new and starting only one new thing at a time. I just started right out at the suggested five sprays per day, but that is actually not recommended.
  2. Too much bio-identical progesterone can be converted into your body into estrogen or cortisol, so there is definitely the possibility of too much of a good thing. I cut back and actually felt better. Also, although I believe progesterone works great for covering damage to GABA-a receptors, there is no definitive study proving that bio-identical hormones do not cause cancer. Every study looked at a mix of those and the synthetic hormones. So we don’t know if just synthetic hormones cause cancer or if the bio-identical ones also can. I’m weaning off progesterone because I feel like I can and if I don’t need it I should not be on it.
  3. Many floxies deal with excess histamine. Histamine is a neurotransmitter of the sympathetic nervous system. Perhaps we are just making too much of it and/or we are not making enough of the enzyme that breaks it down. Histaminase is an enzyme that breaks down histamine. Many floxies are lacking in this enzyme. Also, histamine can be found in foods, so sometimes what we eat can make the problem worse, especially if we are lacking the enzyme to break down histamine. The symptoms of high histamine are way beyond just a stuffy nose or a rash, although those can happen. A lot of flox symptoms look like symptoms of excess histamine. So am I changing my theory and saying histamine is the problem and not lost GABA-a receptors? No, because in reality both can be happening and most likely are. A body that cannot respond well to gamma amino butyric acid is a body stuck in fight or flight. A body stuck in fight or flight will produce neurotransmitters of the sympathetic nervous system and will find itself in short supply, most likely, of anything designed to break down those neurotransmitters. Anything that helps us get back into rest and digest mode and out of fight or flight mode is ultimately going to help the histamine problem. You can take histaminase as a supplement to try to break down histamine, but it has limited effect outside the gut. Anti-histamines can make problems worse as they block only certain receptors for histamine, but the others take the brunt of the excess. So your stuffy nose gets better, or your rash goes away, but your anxiety goes through the roof and you are left to wonder why an anti-histamine made you anxious. It didn’t but excess histamine can and you only dealt with one or two of the issues that can be caused by excess histamine. So how do we deal with this in the short term, until our nervous systems heal and produce only what histamine they should and break down what is not needed? Avoid leftovers. If you start trying to do a low histamine diet you cut out a lot of healthy foods, so I didn’t go for the low histamine diet. But left overs are super high in histamine and the longer they sit in the fridge the worse they get. So you could start by avoiding eating leftovers. Also, the TRS I mentioned in number one does bind to excess histamine. This may be why TRS has been helping me. It seemed like I was getting a lot of symptoms consistent with excess histamine and some of the foods from the high histamine food list were giving me a weird burning sensation. It was diffuse and far less painful than my usual burning that I attribute to lost GABA receptors, which tends to show up in specific places on my body, happens when I have been concentrating on something for a long time and can really hurt. Learning that histamine can cause burning also helped me understand why I was getting two types of burning, one intense and localized and one more diffuse that happened only after eating high histamine foods. Since starting TRS I have not noticed any symptoms after eating high histamine foods. My seasonal allergies have not really been bad at all and that is without taking Quercetin. Quercetin can also help with excess histamine, but you shouldn’t take it more than a few months without a break from it as some sources say it can slow your thyroid if taken continuously.

I hope some of what I have discovered is helpful to someone, just remember it is not the same as talking to a medical professional. Doing your own research is also necessary as I have barely scraped the surface of everything there is to know about histamine and about binders like zeolite as a method of detoxing.

I think I have to say that time was a big healer for me. It really was not about taking the exact right supplement, although correcting deficiencies definitely was necessary for me. There was no magic combination of herbs or supplements that made it all go away, although I found a few things that, for me, took the edge off for awhile. It was mainly time– just hanging on and surviving until my body and brain could make the necessary repairs. Making sure they had the raw materials to do that was important, but there are different ways to do that and just because I mention a certain supplement does not mean it is the exact one someone else has to take to heal. There are many different paths to healing from this and absolutely no one does everything perfectly. Stressing yourself out trying to do it perfectly is actually very detrimental. Keep researching, keep asking questions, keep seeking medical professionals who will help you– but also take time to just be and to reflect that, as Lisa has said, the fluoroquinolone knocked you down, but it didn’t kill you. So long as we are alive we have the hope of a better day tomorrow: a day in which we heal and a day in which the medical profession comes to its senses and stops doing this to innocent people.

******

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.

1,722 thoughts on “Ruth’s Story – Cipro Toxicity

  1. Al July 8, 2014 at 11:42 am Reply

    Amazing Ruth! Loved this story! You have the perfect attitude that will help you continue to recover and grow from this experience and you will be stronger for it. Thank you the inspirational post!

  2. Diego July 8, 2014 at 2:06 pm Reply

    Loved your story. I know know that all that yellowish liquid that came out my ears was magnesium. I even had to get tubes put in. Very crazy but we will get there!

  3. Kim July 8, 2014 at 3:07 pm Reply

    Thank you . Great story

  4. Ruth Young July 8, 2014 at 4:56 pm Reply

    Thanks everybody! I still forgot some symptoms on my list such as: the large floater in my right eye came back and my age related far sightedness suddenly got a lot worse.

    I take hyaluronic acid for my floater. It started around five or six years ago, but after I started the hyaluronic acid it got quite a lot better, and would remain pretty much gone so long as I kept on taking it. If I’d run out of hyaluronic acid it would start to reappear. A lot of people think hyaluronic acid is too large a molecule to be effectively used by the body if you take it in a supplement, but it does seem to work for me. Ever since I was a kid things always looked darker out of my right eye, and then in my late thirties the huge floater formed, so I think there is something really wrong with that eye. After Cipro it was the worst it had ever been. Now it’s back to normal. I’d be interested to see if anyone else finds hyaluronic acid useful for breaking up Cipro induced floaters in their vision. I think it works.

  5. Ruth Young July 8, 2014 at 5:21 pm Reply

    I really think I need to write a book about this experience! I forgot to mention the hyperacusis. Luckily, it didn’t last long. The auditory and visual hallucinations were also confined to the acute stage.

    My favorite auditory hallucination was when it kept sounding like a pipe was stuck on the organ while I played a hymn. I kept hearing a “wooooo” like a higher pitched pipe was stuck. I’d give a long pause between verses trying to determine if it was real or not, because I’d been having a lot of auditory hallucinations. Should I try to pull the pipe? How do I track it down if it’s not even real? Do I turn off the organ and play piano instead? But why do that if there’s not a pipe stuck? But what if there is and people are wondering why I don’t do something about it as they sit there hearing it?
    Luckily, the illusion vanished as I finished the hymn. It wasn’t real. Totally weird experience.

  6. debbie July 8, 2014 at 5:38 pm Reply

    great story,i have just got on this train,just so looking for info,,,,,i took all my meds ,,,,,10 days,,,,levaquin,750mg,three weeks later,,,can barely walk,,,i also have ra,,,what meds can I take since I took this medicine and how long before I can take anything,,,,now I am suppose to take 600mg ibuprofen every 4 hours but I don’t know what meds go with what…sure don’t want to feed the flox

  7. Ruth Young July 8, 2014 at 6:00 pm Reply

    Debbie,
    Don’t take the Ibuprofen. NSAIDS are bad news with FQ’s– find an alternative that’s not an NSAID.

  8. Nick Luciano July 9, 2014 at 4:21 pm Reply

    Ruth thank you for your story. I was floxed exactly the same time as you and i remember seeing your messages on the site. I know you will continue to recover.
    Do you remember what your symptoms were the first time you got floxed by cipro and how long it lasted?

    • Ruth Young July 9, 2014 at 6:50 pm Reply

      The first time I got floxed I had visual hallucinations big time, intractable insomnia and the feeling like I wasn’t alone in my room at night. I had a lot of fear.
      Later on, my ankles were tight on and off for maybe a few weeks. I did not connect this to the Cipro. My face had that weird feeling of pressure, just on the right side of my face. It might have been slightly numb. I remember it as I walked into class one day. That also could not have lasted very long. Maybe a week or two, on and off.
      I think I was floxed in 1987 or ’88. I would have been 19 years old. I don’t know how many pills I took. I healed fast because I was young.
      I think I honestly believed I was nuts. I didn’t tell the doctor I was seeing things and that’s why I didn’t want it again. I didn’t know a drug could make you see things. I thought that there literally was a demon in that bottle of pills. Maybe that wasn’t so far off…

  9. Kate July 9, 2014 at 5:54 pm Reply

    Hi Ruth I loved your story, thank you for sharing it. I do have one question I saw your comment about forgetting how to play pedals. I was prescribed cipro twice in the beginning of the year and I am having every single symptom you have had and I was wondering did you find yourself forgetting names to people names of things you previously knew lyrics to your songs etc? This is one of my main problems and it is very scary. Again thank you so much for sharing your story I relate to everything you are going through and no one can unless they go through it

  10. Ruth Young July 9, 2014 at 6:42 pm Reply

    I teach music K4-8 two days a week and when I was able to go back to that I forgot kids’ names constantly or would call them by the wrong name. I would lose my train of thought very easily. But that all got better through magnesium supplementation. I think it’s from low magnesium levels, and when you get more into you and your brain takes it up again you will find that your memory will improve.
    It wasn’t long before I could not only play pedals effortlessly again, but I could learn and retain new music. Teaching got easier. I knew their names again. My memory and cognitive functioning is completely back to normal now.

  11. Kate July 9, 2014 at 7:29 pm Reply

    Ruth thank you for responding so quickly. Did you previously know the kids names by heart?

    I find that songs I once knew so well i have completely forgot the lyrics, or it will take me awhile to catch on it feels like everything is so foreign to me now and it is very frustrating. I also find spelling which i have always been great at I am starting to spell certain words wrong.

    I have been aggressive with alot of supplementation but not magnesium. About how long did you take magnesium before you noticed that you were remembering things again? I do have an appointment with neurology coming up however if nothing surfaces I can only imagine my symptoms be connected with Cipro. I took Cipro twice in the beginning of the year and was on macrobid and a slew of other antibiotics before they gave me cipro.

    Thanks again for your story, your symptoms literally match every one of mine and I am so sorry you are going through this!

    • Ruth Young July 9, 2014 at 8:12 pm Reply

      I did know their names, but after Cipro it was really hard to keep them straight.
      It seems like I was able to get my magnesium levels up and improve cognitive and physical functioning in about three weeks. My doctor said to stop supplementing and I was back to square one in about a week’s time. But within two to three weeks I was better again. Cycling symptoms made it hard to stay better– when it’s bad you are under so much stress that you burn a lot of magnesium. Also, I find that when my symptoms cycle I have to pee a lot! So I’m excreting more. (Another symptom I forgot to list! There were so many.)
      But barring a bad cycle I think with aggressive supplementation you can get back to normal in about two to three weeks– if magnesium deficiency is the only cause. Mitochondrial damage can cause brain fog too. But for me it was simple magnesium deficiency. Assume it’s that for now and just hit the magnesium hard even if it sometimes makes you feel worse. Do strong magnesium baths– four to six cups of Epsom salts. I don’t go that strong anymore because it makes me sleepy. It may do that or it may make your heart pound, depending on the level of damage to your CNS. It is safe, so long as your kidneys are healthy. If they aren’t you can’t supplement magnesium.

      I know at first I needed to hit the magnesium really hard to stop what was going on and save my body. But you can’t cure it over night either. It takes your body a very long time to really replace that magnesium, because the Cipro clawed it right out of your cells in a way nature would never have taken it. Hit it hard initially, but then find a good maintenance dose for you (take more if you’re going to be physically active or under stress) and just assume that for the next few years, if not the rest of your life, you cannot slack off on it. That’s the way I’m approaching this. I’m functional now, but not cured. I’m both patient and vigilant and I believe that’s the only way to stay functional and perhaps even gain more healing.

  12. Kate July 10, 2014 at 3:34 pm Reply

    Ruth, I find it hard to multi task .. I used to be very efficient with multi tasking and now its like I will forget things constantly or even remember that I had to do it until a couple hours later where as before I could keep up with things. I would imagine thats your brain when its under oxidative stress. I started doing the magnesium today I have taken 400 , I have some MagOx left over so I will use that then pick up some more. Another frustrating side effect is the depersonalization 😦 I just try not to focus on it as much, driving has become so weird for me. How did you do with the Acetyl L-Carnitine and Mitoq with your blood pressure? Did the Acetyl L-Carnitine help with muscle weakness? Hope your day is going well. Thanks again

    • Ruth Young July 10, 2014 at 3:49 pm Reply

      MitoQ and Acetyl-Carnitine didn’t seem to have any effect on my BP one way or the other. It seemed like magnesium could raise it, but symptoms cycle and sometimes it would go up for seemingly no reason. I was driving myself crazy trying to find just the combination of supplements taken at the right time that would cure me. I blamed myself when symptoms flared, thinking I should have taken this pill or that pill. In truth, a damaged CNS can cause all kinds I craziness and none of it was my fault, nor could I, nor anyone, fix it instantly.
      I think getting magnesium levels up helped with my muscle tone. I think it was partly a nerve conduction issue, because I got a lot of tone back very fast. But I did also actually lose some lean muscle mass.
      MitoQ and Acetyl-Carnitine are excellent supplements though. I’ve been thinking of adding ribose. It was those three together that gave Dr. Whitcomb’s father a dramatic improvement in the ejection fraction of his heart and probably bought him a few more years of life he would not have had. I figure if it worked for someone literally on his deathbed it should work for floxies. A lot of the anti-aging medicine actually works well for us. What is aging but damage to the mitochondria over time? Cipro ages you overnight, but it may be possible to turn back the clock.

  13. claire July 13, 2014 at 7:58 pm Reply

    Hi ruth , nice story i also took my pills this year feb along with flagyl i just took 3pill of cipro the flagyl is that i continue i have all symptoms but not so severe . I dnt have problem with the calves but i have severe fatigue that affect my walking habit. The pain is all over my head. My face tighten and my head gets heavy thats my real symptoms also my chest tighten on 2nd month .but now only in my head. I have all symptoms such as vibrating ,anxiety,burning,nerve pinch evrywhere and so on . That change in 4 month i can go to work but sometimes sick also i go date to normalize but im still thinking i am permanent damage but we dont know yet. Im still scared as .

  14. claire July 13, 2014 at 8:06 pm Reply

    Sorry for my long post . Also i saw article about mercury its like drug maybe stays at blood for months , but it will stay at brain for along time and do damage in there. I was afraid ,i have intolerance in vitamins i dont drink any of it just healthy food and healthy daily routine . I can go now eat and go to mall but my face still tighten eveyday . Im looking forward to do ozone therapy. But im also afraid .thank you

  15. Ruth Young July 14, 2014 at 9:26 am Reply

    Claire,
    I had tightening in my face too. Dr. Whitcomb thought it might have been from a muscle tension headache. He said those are the most painful types of headaches. He encouraged me to keep up with meditation and trying to relax as much as I could. That’s hard, because you can’t always relax with a damaged CNS. But it helps to keep trying. I still sometimes feel it in my face– a tightening that seem to be pulling on my nose. In the acute stage I felt like something was tight inside my head a couple of times– very weird feeling. That completely went away.

    There is no way the Cipro is still inside of you. Dr. Whitcomb was very clear on that. It’s comletely gone within three days for sure, probably much sooner than that. It’s eliminated very effectively through urine. There is absolutely no place for it to hide in the body. This is all what Dr. Whitcomb told me.

    Think of it this way: If a bus hits you, you are in a world of hurt and the bus doesn’t still need to be there for you to feel the effects of it hitting you. Cipro is like the bus that hit you. The Cipro is gone, but it damaged you when it hit you. Just like it would take a long time to recover from getting hit by a bus, it takes a long time to recover from Cipro damage.

    But most people do recover. It’s a small minority who get worse and worse. That acute stage is pretty bad, but it sounds like you’re already past it, starting to take your life back.

    I never had the ozone therapy, but some people swear by it. It might help. Even if you decide not to do it, I think your symptoms will eventually go away, or get to a point where they are much more tolerable.
    Ruth

  16. claire July 25, 2014 at 4:36 am Reply

    thank you ruth , all my symptoms lessen i only have face tighten .. im happy to hear that your face getting ok ..i think it depends how many you took . it has chance you will improve if not so many . but i know people dont have so much reaction in these kind of antibiotics .. my face doesent change it always tighten . but it not hurt its like my face have plaster or tape .. i forgot what the feeling of having a normal face or head again ..even i tell this some of of my friends they didnt understand me .. so i say instead i was overdose ..its very hard coz theres lot of my relatives dont have any idea of this they still make me stress .. they think im normal .. so im functioning but my move was counted .. but i keep going on …and trying hard to get positive .. i will never give up .. take care

    • Ruth Young July 25, 2014 at 4:16 pm Reply

      My face continues to get better. It’s not getting numb anymore. I think you’ll see improvement over time too.

  17. Lane July 27, 2014 at 9:33 am Reply

    Hi Ruth,
    Has your skin improved (sagging)?
    Thank you,

  18. Ruth Young July 27, 2014 at 9:56 am Reply

    My skin got better in a couple weeks. I stopped supplementing magnesium, it sagged again as I relapses and again improved in a couple weeks. It’s fine now. In fact, I look younger than before Cipro. Improved nutrition and a lot of anti-aging supplements I suppose.

  19. EPA August 22, 2014 at 7:37 pm Reply

    Ruth, do you live in Wisconsin?

    • Ruth Young August 22, 2014 at 8:04 pm Reply

      I do live in Wisconsin. The picture was taken at Mirror Lake State Park in Lake Delton. I’ve met a lot of floxies from Wisconsin, both online and people who live near me. FQ toxicity can’t be rare!

  20. Ruth Young September 24, 2014 at 11:27 am Reply

    It won’t be long now before I will be able to write an update. I’m waiting a little while to write it, since symptoms can cycle and I may have some ups and downs left. However, most of September has been symptom free or such low level symptoms that they are totally in the background and easily ignored. I have a cold and that is flaring my symptoms a bit, but I expected much worse.

    I keep expecting the worst and it doesn’t happen. Like that pounding heart thing– although I’ve had an elevated resting heart rate a couple of times (66-68 bpm instead of 58-62) and a few flutters here and there, I really haven’t noticed that most annoying of symptoms. Feelings of fear are decreasing– I had that once this month as I was falling asleep and it wasn’t very intense and it was after watching a scary Dr. Who episode before bed. I’m able to drive and listen to the radio now without it flaring my symptoms. For a couple months I mostly drove around in silence. My windows of normalcy are even more normal than before, if that makes any sense. So continued healing is possible over time.

    I think the magic bullet for me might have been magnesium threonate, a new magnesium supplement that targets the mitochondria. I take less than the recommended dose and only in the morning. It’s kind of simulating, and according to reviews online by non-floxies, it’s like that for a lot of people, not just those with a damaged CNS. Don’t let that stop you from taking it though– even one pill a day seemed to help push me to greater healing almost overnight.

    In considering how I could be so lucky to go from being so severely floxed to regaining full cognitive function and even being able to go hiking within a few months I have to say it’s not just the magnesium. Almost all floxies take magnesium.

    I think it’s the MitoQ because it is designed to target the mitochondria. Lisa has really opened my eyes to how it is all about the health of our mitochondria. I recommend MitoQ. Their website has stories of people being healed after taking it– healed from diseases that are probably caused by mitochondrial disfunction. I will write more about this in my update. I’ve also been fousing on probiotics lately with good results.

  21. Eliza September 24, 2014 at 5:35 pm Reply

    Great news! Is there a specific brand name you take??

    • Eliza September 24, 2014 at 5:38 pm Reply

      Or is MitoQ the brand name?

  22. Ruth Young September 24, 2014 at 7:21 pm Reply

    MitoQ is the brand name. It’s made in New Zealand. It’s quite unique.

  23. Charles Tooraen October 8, 2014 at 1:16 pm Reply

    Hi ruth, any tips for m? My mag levels are high according to nutra eval test by Genova. My B6 and B3 are low, but when I take them, my neuropathy gets much worse. Coq10 and PQQ both caused horrible relapses (one lasting 3 months). I have managed to make good improvements with insomnia and gut function by eating a lot of fermented veggies. The only thing that helps to some degree is Ativan, but I don’t like taking it, as I always have a bad rebound with it. So in my case, all the things that help (mag, B vitamins, PQQ, Coq10, etc) seem to make me worse?? I had such bad relapses very close to taking PQQ and Coq10, I am terrified to try them again. Magnesium is not so bad, but it can feed the biofilms that yeast and other bad gut bugs use to shield themselves. Any insight? I have spent thousands on supplements, doctors, traveling, therapies, etc. Nothing has seemed to help, as most seem to make my condition worse. Only fermented foods have helped with the gut issues. About 10 months out now. I have the threonate, but not tried it yet.

  24. Charles Tooraen October 8, 2014 at 1:32 pm Reply

    Oh, and none of my tests so far have shown any signs of oxidative stress or DNA issues. The only tests that have been positive were stool tests for bacterial dysbiosis.

    • Ruth Young October 8, 2014 at 2:21 pm Reply

      It sounds like your whole issue could be a micro biome devastated by the FQ, Charles. Maybe the magnesium threonate will be better since you can take a smaller amount. It is targeted to help right where cells need it. You don’t have to saturate your system with magnesium for it to restore intra cellular magnesium.

      I’ve heard B6 supplements all by themselves can cause neuropathy. Maybe get B6 through food instead.

      Have you tried alpha lipoic acid or methyl B12 for nerve issues?

      This is gross, but there is an experimental treatment out there to repair a person’s micro biome. It’s basically a fecal transplant. They’ve done it with mice. I have no idea if anyone is actually doing this on humans or if it’s only experimental. The results with mice were amazing. For example, obese mice became thin when their micro biome was diverse and healthy. So our micro biome does a lot for us. I’ve been drinking kefir. It tastes nasty but makes me feel amazing.

      The third thing might just be time. If you have a damaged central nervous system that can wreak a lot of havoc. There are people at Benzo Buddies going through a lot of the same stuff as floxies.

      That’s why I believe that although FQ’s damage mitochondria, not every Floxie symptom is caused by mitochondrial damage. FQ’s have multiple mechanisms by which they damage us. But the symptoms can be the same even when the cause is different.

      How expensive was the DNA testing you had? I’m curious, but perhaps it’s better not to know and to just keep believing I will get well.

  25. cluelessdoctors October 8, 2014 at 11:17 pm Reply

    This is an amazing story! I just discovered this whole Cipro issue and started a blog on it just a couple of days ago. I am not quite sure how I landed on your blog but I sure appreciate what you have posted here. Ia m reblogging it to have it available to those who need it.

  26. […] Ruth’s Story – Cipro Toxicity. […]

  27. Rose Casanova October 12, 2014 at 5:55 pm Reply

    Hi Ruth, So glad to read that you’re getting better. I just ended my Cipro dosage on September 12, 2014. I immediately connected my symptoms with the medication, or in my case, poison. I am doing the Glutathione IVs and a whole lot of other supplementation that you mention. I take magnesium, but not in the Threonate form. I wonder if that would make a difference. I also researched MitoQ, Idebenone and PQQ which I am going to give a try. I hurt to the touch and have terrible twitches and spasms all over. There’s a whole bunch of other stuff going on, which sort of comes and goes throughout the day, or hour. Your story of recovery is very uplifting and hopeful. I’m trying not to get caught up in the doom and gloom of the symptoms and just do what I can to heal. I thought I had healed from worser situations, but it turns out I was wrong. Looking forward to your next update when you are 110%.

    • Ruth Young October 13, 2014 at 4:10 pm Reply

      Rose,
      I like that you said 110%! I really want to be better than before I was floxed. I waver between totally believing that will happen and believing that this isn’t a condition anyone ever heals 100% from, but we just manage it the best we can. The truth may lie somewhere in the middle.

      It does get better. The first couple months are really tough, but I believe you might find after that, by about the third month, that you can start living a fairly normal life again. That’s how it was for me. The timeline is different for everyone. But very few people just get worse and worse and most who do didn’t realize what had happened to them in time. You started treating it right away and I think that does make a huge difference.

      Make sure to take less than the full dose of the mag threonate and only in the morning. I think it will help a lot. Magnesium can be tough to tolerate with a damaged CNS. It relaxes you and sometimes we floxies can’t do that very well thanks to downgraded GABA receptors. But magnesium threonate is paired with a stimulating metabolite. So long as you take it only in the morning and a small amount that might be a good thing. In the beginning I kept getting a paradoxical response to magnesium. It made my heart race and my blood pressure skyrocket. I kept trying though. If I had to stop it for a day or two I would, but then I went back to it. Small amounts during the day helped.

      You can take a small amount of magnesium threonate and it will be effective, because it targets the mitochondria and crosses the blood brain barrier. It goes where you need it most, instead of just floating around in your bloodstream. I felt sometimes like supplements raised my blood level of magnesium, but foods with magnesium in them seemed to be actually more used by my body without the bad reaction I got from supplements. Mozzarella cheese, nuts, fish and yogurt were all helpful.

      I hope trying some of the things I tried help you. We’re all different so you never know. We just don’t know enough, so we throw everything at it and hope something works.

      Don’t let down cycles throw you off. Healing from this is not a linear progression. Just hang in there.
      Ruth

  28. rich October 14, 2014 at 8:35 am Reply

    glad to hear… my tight calves for 2 months annoy me bad

    • Ruth Young October 17, 2014 at 1:26 pm Reply

      Put a plastic water bottle (not full to the top) in the freezer and use it to massage your calves. Don’t he afraid to really dig in there. Spend all the time you need and do it frequently throughout the day. That really helped me. I have an ultrasound machine too and that was a godsend. You don’t need a physical therapist’s license to buy one. OTC Wholesale has them for sale online. Research all contraindications. Never do it if you don’t know the cause of your pain– there are conditions that can be worsened by it. Research the signs of a DVT (blood clot in your calf) and if you notice signs of a clot don’t do it there. Otherwise, those home machines are safe. Mine was about $700. If you are middle aged, you will thank yourself for buying it for the rest if your life even if every one of your Floxie symptoms goes away. Yeah ultrasound! Really loosens things up and restores circulation. You don’t need to set the machine high to get the benefits either. Low or no heat ultrasound is very effective for me if I’m consistent with it.

  29. Pauline Moore October 25, 2014 at 3:14 am Reply

    If you have chronic kidney disease, can you still take magnesium to help with your cipro symptoms?

    • Ruth Young October 25, 2014 at 4:23 am Reply

      No, Pauline, you can’t. It could be dangerous.

      But many floxies have healed themselves just with healthy foods. It will probably take longer, but you can still get there. Foods that made me feel better were oranges, berries, cooked spinach, nuts (esp almonds), fish (especially salmon), yogurt, kefir and mozzarella cheese. Important nutrients for floxies are vitamin C as an antioxidant and because it promotes tendon healing, magnesium of course, but I found foods high in calcium, but with some magnesium also in them, helped me feel better. You can research what foods have the nutrients you want to add, and also trial and error, as to what makes you feel good when you eat it. Your body will tell you what it needs.

      What is wrong with doctors giving out FQ’s to patients with kidney disease? Like you needed another problem to deal with! I hope you feel better soon.

  30. tricia November 21, 2014 at 12:28 pm Reply

    Hi Ruth…thanks for your story. I’ve become recently floxed since Oct 30, 2014…..and I have many of the same symptoms. My legs,feet, and calves are extremely sore, my vision is off and I am extremely exhausted. I’ve been doing everything from taking magnesium, Epsom salt baths, along w a host of other supplements… eating mostly organic produce and meat. I’m hoping I will recover in time, but I have no idea what my future holds at this point. I also live in Wi , and there are many natural and holistic drs here, but not one knows anything about cipro toxicity! Every time I go to the Dr, acupuncturist, friend, I’m getting tired of explaining the damage cipro causes as the rest of the world seems to think I’m crazy! I’m thankful for your story and everyone else who has lived through this with courage and strength . I hope someday my story can be posted on here too ! Take care and god bless

    • Ruth Young November 21, 2014 at 3:16 pm Reply

      Tricia,
      I’m sure if you stay the course you will eventually post your recovery story here. It can take a long time and the first few months are bad, but you will get there.

      It’s ok if doctors don’t know all about FQ toxicity so long as they are willing to do research and try to find ways to help. Dr. Whitcomb didn’t know all that much about it, but he’s got this great big brain and he just kept thinking of things that could help. No one has all the answers, that’s for sure. But time seems to help most people.

      I’m doing better all the time, not 100%, but usually my symptoms are barely noticeable if I even have any. My stamina is better than before Cipro most days.

      I recently added Uridine, so you may want to research that one. Lisa had good results with it.

      Hang in there!
      Ruth

  31. tricia November 21, 2014 at 6:06 pm Reply

    Thanks Ruth….I am very hopeful I will recover. Mentally things were horrific the first two weeks, I had terrible brain fog, suicidal thoughts, insomnia, my mind was literally spiraling out of control…..I was afraid of myself!! I took a natural supplement, pharma gaba and that really helped! So at least my mind is back! I hope that doesn’t change for me. Physical symptoms seem more intense everyday, but I’m just taking one minute at a time. Did you change your diet in any way?? I heard a lot of success with the specific carbohydrates diet. I’m sort of doing that now, I’m eliminating coffee, sugar, alcohol, soy, and wheat. In other words everything that I love. I’m glad your recovery took months, and not years. Do you think you recovered quicker because you treated it quickly in the acute phase?? I hope that’s the case for me, too !!

  32. Jen December 6, 2014 at 11:16 am Reply

    Hi Ruth, I tried taking CoQ10 but after a few days I started getting nauseous and dizzy so I stopped taking them. I’m not sure if the MitoQ and PPQ will have the same effect on me. Any ideas? Thank you in advance.

    • Ruth Young December 6, 2014 at 1:24 pm Reply

      Jen,
      Another Floxie, Charles, has a similar problem. He posted something recently about his detoxification pathways being all messed up. I would make sure your kidneys and liver are functioning ok. My early trips to the ER weren’t an entire waste. I made them check things like my kidney function. Everything checked out.

      If everything checks out your most important things in the beginning, I think, are magnesium, vitamin C, and probiotics. Even those things you might have trouble tolerating at first. You might have to get what you need from food.

      Getting floxed sucks because our damaged central nervous systems can go crazy even when we do something good for us! Sometimes it takes awhile before we can tolerate supplements.

      Also, there can be damage to kidneys and/or liver which would cause you not to be able to clear a drug you took, and supplements are drugs.

      Are targeted antioxidants a great thing for floxies to take? Yes. Can everybody tolerate them? No. At least not initially. Other than magnesium at times, I had no trouble tolerating any supplement. I was lucky.

      If everything checks out, just give it time and try again. Don’t buy Idebenone or MitoQ until you can tolerate CoQ10. No sense wasting money.

      Nausea is a classic Floxie symptom. Might have had nothing to do with what you took. But I would get things checked out. Then you know where you stand.

      Good luck!
      Ruth

  33. Jen December 6, 2014 at 2:38 pm Reply

    Thank you Ruth. Would the kidneys and liver be checked through blood test?

    I have been able to tolerate all other supplements I’m taking so far…magnesium, vit c, vit d, glucosamine chondroitin msm, fish oil, probiotics and turmeric.

    I took cipro 2xday for a week in the middle of Aug this year and my symptoms started on Aug 31. My symptoms are joint/tendon pain on all my limbs with back/shoulder pain as well. Along with tingly/pins & needles feeling. I was bedridden for about a month and now I’m able to walk.

    Did you find that your physical symptoms were worse later in the day? I made the mistake of also taking a few Naproxen and Ibuprofen and 2 rounds of steroids…rheumatologist said I had viral arthritis… sigh…

    How to convince doctors who don’t believe cipro can cause this to run more tests? They’ve done all kinds of autoimmune blood tests which came back normal.

    Thank you.

    • Ruth Young December 6, 2014 at 4:18 pm Reply

      Jen,
      Forgot to answer your question– yes, everything’s worse later in the day. It still is, but at first by two to three p.m. I was just done. Now I can keep going longer, but sometimes even on a day with no symptoms all day I’ll have some symptoms in the evening. Resting and decreasing stimulation helps a lot.
      Ruth

  34. Ruth Young December 6, 2014 at 4:14 pm Reply

    Jen,
    Yes, you can have them check kidney and liver function through simple blood tests.

    At least the doctor who floxed me believed me. However, she and Dr. Whitcomb both kept the door open for other possible causes for any and all of my symptoms, which is probably a good idea. You aren’t saying to them, “I think Cipro might have damaged my organs.” You’re saying, “I’m not feeling well, could we please rule out kidney or liver function problems via a simple blood test to ease my mind.” Maybe they already did those tests. I know I got really sick of being stuck with needles, but it also is good to know what’s going on in your body.

    They’ll throw that magnesium blood test at you and say, “You’re high normal for magnesium. Stop supplementing.” Ignore that, unless they say your kidneys can’t handle it. Another Floxie, Mark, posted that a doctor told him you need to keep that magnesium blood level quite high to facilitate healing.

    You could try a different brand of CoQ10. A non-Floxie frind just told me today she switched brands on a supplement she has been taking and she got really nauseous from it. She went back to the old brand and was fine. Ubiquonal is better than CoQ10, or so I’ve heard. Must be a better form of it. MitoQ is the best, but pricey.

    There are doctors who will believe you. Keep looking!
    Ruth

  35. Jen December 6, 2014 at 4:32 pm Reply

    Thank you so much for your time and valuable information! 🙂 This website has been a source for so much information. Thank you for taking the time to answer my questions and your advice on how to approach my doctor regarding the kidney/liver function test. Survivors like you give me hope. 🙂

  36. tricia December 6, 2014 at 8:24 pm Reply

    Hi Ruth….just wondering if your teeth issues ever resolved? I’m experiencing some teeth sensitivities (which I never had any problems before levaquin) but its mostly in my back molars. I’m not sure if I can prevent any further damage from being done to my teeth other than oil pulling , good diet, and supplementing. Any information would be helpful. Thanks! Trick

    • Ruth Young December 7, 2014 at 4:37 am Reply

      Tricia,
      The thing that helped my teeth was getting magnesium and calcium
      back into me. I think Cipro chelated both out of me to quite a scary extent. After I saturated myself with magnesium (through supplements and topically) and ate large quantities of food containing both magnesium and calcium ( yogurt and mozzarella cheese mainly) my teeth got better. I was careful to brush a lot, and not eat sugar. I also eventually added vitamin D3, which I’m sure also helped. However, don’t start it if you still have overt signs of severe magnesium deficiency and always take it with magnesium.

      • tricia December 7, 2014 at 7:45 am Reply

        Thanks Ruth….I have been taking large amounts of magnesium and calcium but not sure if I’m still defiecient. I did supplement w vitamin d3….started that last week. Some of my physical symptoms have improved somewhat, not as many floaters and my eyes can focus normally, and I even have longer periods of time where my feet, ankles aren’t hurting. I guess I’ll keep supplementing high amounts of mag and calcium…..and eat cheese and leafy greens! Thanks Ruth

  37. Tricia December 6, 2014 at 8:26 pm Reply

    I meant Tricia …….sorry for the type-o 🙂

  38. tricia December 13, 2014 at 7:29 am Reply

    Hi Ruth, I was wondering where I can get ultrasound therapy done? I know this worked for you and a few others.. .do I need to get physical therapy in order to get the ultra sound machine ? Also, at 6 weeks out, did some of your physical symptoms get worse before they got better? The arthritis like feeling in my fingers and toes has abated, but leg cramping and burning has increased in legs, calves, and feet. I walked half a mile on the tread mill yesterday…. I couldve walked a mile maybe but I didn’t want to stress or pull anything. This whole thing has really been a test in patience and trust :/

    • Ruth Young December 13, 2014 at 8:49 am Reply

      Tricia,
      You can but an ultrasound machine from OTC Wholesale online. They never asked for my PTA license, so give it a go– I think you’ll be able to buy it no questions asked. But you can get US from a physical therapist and some chiropractors use it. It’s not really physical therapy. It’s a modality, so lots of practitioners use it.

      If you buy one: get one that has both 1 MHz and 3 MHz settings and a couple sizes of ultrasound heads. Be very careful with the sound head not to drop it or bang it against anything or you’ll break the crystal in there. There are contraindications for US, and you can find those online. If you suspect a blood clot, tumor or infection don’t use it in those areas. If you have no idea why something hurts, don’t just throw US at it. Don’t use it over organs. Avoid bony areas or use 3 MHz there. Can’t use it over metal implants. Keep the sound head moving always, but slowly. Do at least eight minutes over small areas, then move to the next area for another eight minutes.
      That’s why it’s nice to have it at home. You can do all the treatments you want! If you are really young you might prefer just seeing a PT for ultrasound. If you are middle aged or anywhere near it just get it and be thanking yourself you did for the rest of your life. My husband and I used ours a lot even before I got floxed!

      Yes, everything can get worse at any time. It sucks. Eventually, it gets better so that even the times it is worse are not as bad. It’s not linear. It can get dramatically worse before it really gets better. Just hang on.

  39. Ruth Young December 25, 2014 at 5:46 am Reply

    I’m just popping in to say that over the past few months I’ve continued to get better. I think most people only post things in Floxie groups when they are having problems. We get well, go on with our lives, and never come back to say we were healed. This leaves a lopsided view causing many floxies to think they will be stuck in the acute stage forever, relapse frequently and have cycling symptoms forever. In reality, most people get well and go on with their lives. They may post one time that they healed, and then never come back, but they poured out their misery in multiple posts. I’m here to say that I am continuing steadily to get better.

    I am able to play some really complicated Christmas preludes and postlude on the organ again. Brain fog is all gone. Last night I kept thinking, “This is the exact polar opposite of brain fog.” My mental acuity is sharper than before I got floxed and it has stayed that way, consistently. I’m at ten and a half months out. Some things, for me, have healed all the way, with no return of symptoms.

    If you’ve been floxed and are scared, focus on that.

  40. amy feder January 6, 2015 at 4:20 pm Reply

    Hi Ruth, So happy to see your most recent update. How goes the tinnitus? I have it bad, I’m about 3 months out from 30 cipro pills. That coupled with the extreme anxiety is really wreaking havoc on my life. Any pointers? Recommendations?

    • Ruth Young January 6, 2015 at 4:42 pm Reply

      Hi Amy!
      I would say my tinnitus from Cipro is completely gone. I suppose it could return again as symptoms cycle, but right now it is gone. I still have very mild tinnitus occasionally, but it ‘s actually less than I had before Cipro. I read online that the combination of magnesium, alpha lipoic acid and benfotiamine can reduce tinnitus. I would say it works for me, as when I ran out of benfotiamine and ALA my tinnitus did return to my pre-flox normal. My husband has really bad tinnitus all the time (from loud noises, not floxing) and magnesium reduced it a little but the other supplements did nothing.

      I hate to tell you, though, nothing will reduce or get rid of the tinnitus from being floxed. It is central nervous system damage that just needs to heal over time. Chances are good that it will! But that super loud, annoying tinnitus from the Cipro was in no way reduced by anything I took. It came and went as it pleased at various volumes and then it was gone and I realized that I had far less tinnitus than I had had for years, which was a nice surprise.

      L-Theanine and CalmPRT (which contains Rhodiola Rosea) were very effective against anxiety. Idebenone also helped tremendously, but for some people it can increase anxiety. It’s an awesome antioxidant, so worth a try, I think. If you’re on an antidepressant don’t take it or you could end up with too much serotonin, which can make you very ill. If it increases your anxiety now, maybe give it a whirl again in three months and see if you can tolerate it. It can have a very positive effect on brain chemistry. For me it is like Prozac without the side effects.

      The psychological symptoms do lessen over time. I’m noticing improvement still, and I was functioning pretty well before, so hang in there. It will continue to get better. Avoid benzodiazepines! Just tough it out– you’ll heal faster in the long run.
      Ruth

  41. federmarketing January 6, 2015 at 4:50 pm Reply

    So what is the difference between the cipro tinnitus or the being floxed tinnitus? I didn’t have ringing before cipro but i do now and I assumed that was “being floxed”. It’s odd, over the holidays I had a really decent couple of weeks. Maybe distracted, I’m not sure? But it’s back and loud as ever. I guess maybe just time? Let me know if I’m not understanding, I do have a bit of that brain fog too! Thank you so much for responding so quickly.

    • Ruth Young January 6, 2015 at 5:05 pm Reply

      Amy,
      I had tinnitus before but when I got floxed it changed and was very loud and in a pitch I’d never had before. I could tell it was from the Cipro because even though my new tinnitus showed up sometimes in the pitch I’d always had it was MUCH louder. It was loud enough to distract me during the day while I was working on things. The tinnitus I had before I’d have to concentrate on it to notice it. It normally just bothered me as I was trying to fall asleep or if I was really exhausted. The Cipro tinnitus would bother me even as I was trying to talk to people or listen to the radio. It was much more of an “in your face” tinnitus, whereas what I had before was very quiet and not noticed if there was any other noise going on. Lately though I’ve had days where even concentrating on it and covering my ears revealed nothing but silence. A real improvement.

      If you had none before it’s all from the FQ and will probably go away once you’ve healed. It might take awhile. It will come and go, but eventually even when it comes it will be less annoying. But I don’t think the supplements I mentioned will be effective against it. You could try. Alpha lipoic acid is a great antioxidant and may help nerves heal. But it is unlikely to shut up that really bad tinnitus you get from being floxed. That has to run its course, I think. Others may disagree.
      Ruth

      • Pimpine January 17, 2015 at 1:14 pm Reply

        Hi Ruth, and the others,
        at first, I’m sorry for my english but I live in Switerland and speak french, so my english is bad.
        I’m really happy for you Ruth that your’re getting well. That’s give hope. Thank you for sharing your story.
        I’ve been floxed in june 2014. I took 4 pills of avelox for a sinus infection. The bad things began with the third pil: terrible insomnia, nightmare, anxiety like if I’m gonna die (I had to call the emergency), extreme fear, suicidal though, auditive hallucination and loud tinnitus in both ears, joint pain, muscule pain as well but mild. I took two more pills of avelox because my doctor said that all was in my head, antibiotic could’nt make this things 😦
        The pain and the anxiety disappear slowly, like the other symptoms but the worst stay: tinnitus. I had very light tinnitus before being floxed, like Ruth. I heard it only when I was in a quiet place and before sleeping. It didn’t really disturb me. But the tinnitus after being floxed is awful and with sounds that I never had before, many different sounds, pitches. It “move” a lot, be louder and change of tones, “run” in my head, change when I move and sometimes it deasappear for a short while,… strange. I though it began to improve very slowly but since 4 weeks, it get worse, very very loud with new noises, very agressive. I’have some deep sounds like thunder, it’s like my head and my ears vibrate, other sounds like fax, vacuum cleaner, ringing bell. It’s like my brain become crazy, panic, can’t calm down, like a loud factory in my brain and my ears.
        How was your tinnitus? and yours Amy? which kind of frequency (acute, low)?does it change all the time? did you have a relapse while the tinnitus came back worse and than calm down?
        My tinnitus react now whith noises like tv or music, I’have pain in my ears, in my jaw (the doctor saw nothing). I don’t know why it goes worse. I’have pannic attack, anxiety, suicidal though, pain, all the horrible things that I had before, but worse 😦 I can’t concentrate at work, reading is difficult, I cry all the time.

        Since september, I took supplements like magnesium, vit b and c and coq10 but I think it make any difference. I’m gonna stop. Maybe I’ll try ALA with magnesium and benfotiamine but I’m a bit scared… do you see a difference whith those on your tinnitus? are you always taking supplements?

        I’m sorry that’s a lot of questions and a bad english but I’m so scarred, can’t calm down or have a reall sleep since weeks, and when I red your story it gave me hope…

        • Ruth Young January 17, 2015 at 2:01 pm

          It is very common for symptoms to get a lot worse a few months after taking the pills. My worst time was about two to two and a half months out. Symptoms can cycle at any time, getting better, then getting worse again before getting better! Don’t panic. These changes for the worse are likely not permanent.

          Keep taking all the magnesium you can tolerate. Your nervous system can’t heal without it and the drug took a lot of it out of you.

          The ALA and benfotiamine are unlikely to affect your current tinnitus or auditory hallucinations. They may eventually make your underlying tinnitus better, which is what happened to me. But until your nervous system heals there may not be much you can do. That being said, ALA is an awesome antioxidant and can help nerves to heal, so you should probably stick with it even if it can’t reduce your tinnitus at this time.

          I had the auditory hallucinations too. They are awful. But they passed. I think they will for you too. In the meantime protect your ears from loud noises and keep taking magnesium!

          You might also try one of those kits to dissolve ear wax. Magnesium deficiency seemed to cause me to have very thick ear wax and a lot of it. I bought some drops to dissolve it and that helped a bit with the tinnitus. Don’t try to dig out the ear wax by sticking anything in your ear. You will shove it in farther and make it worse. Use a product to harmlessly dissolve it or have your doctor clean your ears if he notices a build up of wax.

          You may be grinding your teeth at night. This is actually a symptom of fluoroquinolone toxicity. I have a night guard from the dentist I wear to protect my teeth. But I still get jaw pain and sometimes it seems like if I’ve been grinding my teeth then my tinnitus is worse after that. However, I’ve noticed I’m grinding my teeth a lot less now when I sleep, so that is also a symptom that will decrease given time.

          All the symptoms combine to make you feel pretty awful. But they do end. All the awful stuff does go away (for most people) so long as you support your body with magnesium and antioxidants– and give it time.

        • Pimpine January 17, 2015 at 3:08 pm

          whoua, what a quick answer, and a very nice answer, thank you very much, that kind.

          I’ was naive thinking that when relapse come, it will be less hard then the thirst time, I never imagine that it could be worse. I hope it will be better with time because it’s a bad time since one month. I have to lear to be patient…

          I’m gonna follow your advice: magnesium and I try ALA, maybe it could be helpfull.

          I’haven’t any problem with ear wax, the doctor had a look and see anything special.
          But he advise also a guard for the teeth during the night because he think that I’m grinding teeth during the night. I’m waiting for an appointment whith my dentist.

          I’ll try to give my body time, and be soft and nice whith him… like trying to eat ;-).

          Thanks a lot, really!!!

          Take car of you.

  42. federmarketing January 6, 2015 at 4:52 pm Reply

    Also, I’m not sure why it is commenting without my name and with my old company now! sorry about that too!

    • claire January 7, 2015 at 6:09 am Reply

      is goji juice is a good antioxidant i have acne because of this poison .. but im total functioning but still ruin by this .

  43. miriam January 7, 2015 at 11:44 am Reply

    Thanks for all the info Ruth. We’re all your joints making popping sounds when you moved ? Did you also go on an all organic diet & only drank fluoride free water ? The MitoQ & coenzyme q 10 – can they cause liver damage ? Thanks

  44. Ruth Young January 7, 2015 at 12:07 pm Reply

    Miriam,
    I did have, and still have, occasional popping/snapping noises in my joints. This problem is alleviated by lots of stretching. Everything gets so tight at times from being floxed that normal joint motions are not possible. Great Lakes Gelatin (the green can) added to my beverages helped my joints a lot. I have less crepitus in my knees than I had before Cipro, provided I keep up with my stretching.

    I did not go all organic with my diet. I did try to avoid tap water.

    I am not sure about how hard MitoQ is on your liver. Intuitively, I would think it would be good for your liver, because it supports mitochondrial health. But I really don’t know. You could check out their website and contact them. I haven’t had any problems. The main side effect of CoQ10 (and therefore probably MitoQ also at high doses) is muscle breakdown. About 20% of people get that side effect with high doses of CoQ10. That’s why I like MitoQ– the dose is very, very small, but it’s targeted to the mitochondria, so you don’t need to take a lot. Otherwise, you need a lot of CoQ10 to affect your mitochondria. I am one of those people who gets muscle breakdown from too much CoQ10, but I have not had a problem with the recommended dose of MitoQ.
    Ruth

  45. Ruth Young January 7, 2015 at 12:13 pm Reply

    Claire,
    I would eat the goji berries rather than drinking the juice. Juices all have too much sugar and no fiber, so they actually aren’t very good for you. Your acne is a sign that your body is experiencing a high level of inflammation. Avoid NSAID’s to deal with inflammation, as they can make your reaction a lot worse. I found magnesium and antioxidants (and time) helped me the most.

    Early on in my reaction I got a rash a couple of times. Floxing definitely can affect every organ in your body and can wreck your quality of life in a million different little ways. It does end though. It does get better for most people. But even getting poisoned a little bit still sucks. Even having just a couple of symptoms to deal with still sucks. It can be hard because so many people have been permanently disabled by these drugs, and you feel like a jerk to say, “My skin is breaking out really bad,” when for most people that might just be the tip of the iceberg rather than their main complaint. But you know what? I think it’s completely appropriate to be completely annoyed at even minor symptoms and angry that you were prescribed a drug that can have very long lasting side effects when a safer drug could have been used.
    Ruth

    • Jen January 7, 2015 at 9:56 pm Reply

      Thank you for sharing your story on floxie podcast. Your recovery story gives me hope that one day it can also happen for me. Thank you also for sharing information about supplements that worked for you. I have a question about the magnesium you took…is it Mag Mind from Jarrow? Also there seems to be different types of alpha lipoic acids…would you mind sharing which one you took? Thank you in advance.

      • Jen January 7, 2015 at 9:58 pm Reply

        Sorry I meant Mind Mag from Jarrow.

      • Ruth Young January 8, 2015 at 5:30 pm Reply

        I do take the MindMag from Jarrow, one or two pills in the morning. If I take the full dose the third pill has to be in me by noon or it can interfere with my sleep.
        I take Doctor’s Best for benfotiamine and alpha lipoic acid, but from what I’ve read that’s not the best brand out there– just judging from comments by other floxies and user reviews. I think the best is R lipoic acid or something like that. I just read about it, and I remember thinking I should look into that.
        I guess look for an R in front of it and Doctor’s Best, though effective for me, may not actually be the most effective product on the market for alpha lipoic acid. I think there’s a better benfotiamine too, from Japan, that crosses the blood brain barrier.

        • Jen January 8, 2015 at 5:47 pm

          Thank you Ruth. I’ve read that the R alpha lipoic acid is a better in that it’s natural as opposed to the S alpha lipoic acid. I tried to look them up but it was kind of difficult because they don’t always distinguish them. I’ll have to do a little more research on that. Your story definitely gives me hope that the rest of us can find recovery. Thank you!

        • Jen January 8, 2015 at 10:31 pm

          Ruth, I just checked on Amazon and the Doctor’s Best also has the R Alpha Lipoic Acid and well as the Jarrow brand…just wanted to let you know. 🙂 Thanks again.

  46. Don January 8, 2015 at 10:06 pm Reply

    Thanks for all of the useful information Ruth, and for sharing your story on the podcast.

  47. marianne (@vogelfan1) January 11, 2015 at 1:19 pm Reply

    Thank you so much for all the information! I live in Belgium and I feel lucky I have found your website. I will try the supplements , and hopefully I will recover !
    very grateful many warm greetings

    • Ruth Young January 13, 2015 at 5:25 am Reply

      Marianne,
      Thanks so much for reading and responding to my story! I hope that some of the things I tried will work for you. We are all so different in the ways these poisons affect us. But these are the things I found mentioned in research articles as having worked to protect cells against fluoroquinolone damage: magnesium, vitamin C, vitamin E, MitoQ and Idebenone. (Glutathione IV’s have been tried by many floxies and there is anecdotal evidence they help, but we don’t have the research to back it up.) But the things I listed above were proven objectively to work, at the cellular level. So it is my belief that, so long as your body can tolerate taking supplements ( which really are drugs, not food) then those things should help you.
      Happy healing!
      Ruth

  48. Jen January 12, 2015 at 9:15 pm Reply

    Hi Ruth, did you ever have problems with fatigue and low energy?

    • Ruth Young January 13, 2015 at 5:43 am Reply

      Jen,
      I sure did! The first time I tried to do a little house work I felt like I had been hiking the Baraboo bluffs all day. My back was killing me too, because of loss of lean muscle– no core strength at all. Any move not done with perfect body mechanics made me hurt, and just standing up too long made me tired. For months I was just done by three p.m. and had to lie down. Although by summer I was able to do things I loved, I got more tired doing them.

      I would start out with normal energy and vigor, but after a surprisingly short time it would be like my batteries just ran down. Around Easter time we were shopping and suddenly I just was out of gas– I had to lean on the shopping cart. I could barely stay upright. I’ve been that tired before– when I used to clean motel rooms in the morning and wash dishes at night working summers in a tourist town to make money for college. Coming out of the restaurant at three a.m. after a fourteen hour day working physically hard in oppressive summer heat, I would feel that fatigued. But after Cipro I could get that tired after practicing organ for an hour and then grocery shopping.

      I don’t expect to ever be able to work as hard as I did when I was twenty years old, but the fatigue post Cipro was not normal middle age fatigue. I had the stamina of an elderly woman. A sick elderly woman, because my grandma at 80 had more energy than I had after taking Cipro.

      Today my stamina is back to normal. Yesterday was that day during my period that makes me just want to curl up in a ball and sleep all day, but I had to work. After work I felt tired. Then I realized how much better my stamina is now, because I actually never feel tired after work anymore! It was an unusual feeling!

      I still came home and did my workout as usual– I ski around my yard with my cross country skis. I’m up to twelve time around in each direction. I felt energized doing that and my muscles didn’t hurt at all even though I’d been on my feet all day.

      So FQ’s can temporarily destroy your stamina and cause a lot of fatigue, but it can be reversed. You can get completely back to normal. I’m actually better than before I was floxed. I was magnesium deficient before I took the Cipro. I’m finding that things like skiing or being on my feet all day are actually easier now than last year at this time, which is before I got floxed.
      Ruth

      • Jen January 13, 2015 at 8:42 am Reply

        Thank you Ruth for such a thoughtful answer. Again, your insight and personal story rekindles my hope for recovery. Do you feel that any specific supplements helped you in terms of fatigue/low energy?

  49. marianne (@vogelfan1) January 13, 2015 at 5:33 am Reply

    dear ruth
    thank you for answering me
    would ozontherapie help?
    is it possible to Skype with you?
    thank you
    warm greetings
    marianne

    • Ruth Young January 13, 2015 at 5:48 am Reply

      Marianne,
      We can skype. I’ll have to get back to you on that. I have to go to work soon.

      Ozone therapy is one of those things not supported by research, but some floxies say it helps. Personally, I think it is best to start with what we know via research works. Ozone and glutathione are expensive! I would try the supplements first and see how it goes. Just my two cents. Others may disagree.

      I have to go to work now, but I’ll get back to you soon.
      Ruth

  50. Jen January 19, 2015 at 2:34 pm Reply

    Ruth, did you have any tingling and itching? Almost like if you have extremely dry skin? It almost feels like I have a rash like itchy feeling but I don’t have a rash. Thanks again.

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