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.

1,719 thoughts on “Ruth’s Story – Cipro Toxicity

  1. Seongman January 6, 2018 at 9:59 am Reply

    Hello, Ruth.

    I am not good at English. Ruth’s symptoms are similar to mine. If you do not mind, I would like to have a talk with you in Facebook chatting room. I want you to give me the knowledge you know. I would appreciate your help. Please tell me the name of Facebook. Thank you.

    • Seongman January 6, 2018 at 10:03 am Reply

      I’ll leave my email. I would appreciate your help. chicfull02@naver.com

      • Dee August 25, 2019 at 7:28 am Reply

        Ruth, in your 5 year update you mentioned that your cortisol levels seemed to be improving or back to normal. I know I am still dealing with adrenal fatigue and still have imbalance as my anxiety is always ramped up in the morning upon waking. As a matter of fact I feel my anxiety is what wakes me up. I am in high gear first thing in the morning! I just want to slowly wake up one morning and feel calm and peaceful. Do you feel time was your healer for that or did you do anything or take anything to address your adrenals or high cortisol?
        Thanks as always Ruth!!

  2. Dee January 8, 2018 at 5:33 am Reply

    Ruth. What were your symptoms when you took too much NAC? I remember you telling me you had a little issue with that! Hope you are doing well!! Dee

    • Ruth Young January 8, 2018 at 6:01 pm Reply

      Dee,
      My legs ached. It felt like a Herx reaction. I got a rash. I know it was from the NAC because I found a picture of a skin reaction to NAC and it was exactly like my rash.
      Sometimes it seems like my nervous system gets more sensitive to stimulation after a couple weeks of NAC but that could just be a coincidence.
      Ruth

      • Dee Gilmore January 8, 2018 at 6:20 pm Reply

        Ruth. Thanks. I started taking only 300 mg a day of NAC and believe it or not my leg muscles/joints have been achy and stiff which is not my norm. That’s why I was wondering if it was the NAC?? Did you stop taking it or did you just take a very low dose or dose every so many days apart?? I am about 6 1/2 months into recovery. Made some improvements but kind of in a setback right now which is discouraging 😫

        Sent from my iPhone

        >

        • Ruth Young January 8, 2018 at 6:31 pm

          When I start getting symptoms of detox from NAC I stop it. A Herx is actually not helpful. It is something to be avoided. So if it is causing that type of symptom I think you have to stop it. Doesn’t mean you can’t try it again eventually. But give your body time to catch up. Mobilizing more toxins than your liver and kidneys can clear is not helpful.

        • Dee January 8, 2018 at 6:39 pm

          Ruth. Thanks. I’m not sure if I am reacting to it but I will stop it and see if I get a positive change!!! Hope so!! Hard to figure out if I am just having a down cycle or reacting to something? So hard to figure out!!!

  3. jake January 10, 2018 at 12:01 am Reply

    My body uncontrollably shakes when I’m even a little bit nervous (my teeth will even chatter). What causes this? Damaged CNS? Mitochondria? Neuropathy? Any specific mechanism of action going on here? I was floxed 3x when I was 19-20 (I’m 27 now)

    • saskia April 23, 2019 at 2:54 am Reply

      i have the same!! my hands are shaky also

  4. jake January 10, 2018 at 12:02 am Reply

    I forgot to ask – what can I do about this?

    • Ruth Young January 11, 2018 at 4:12 am Reply

      Jake,
      It is possible that the FQ damaged your receptors for gamma amino butyric acid, the main calming neurotransmitter in the body. This makes your autonomic nervous system much more poised toward fight or flight than rest and digest. The good news is that thanks to neural plasticity the situation will likely correct itself with time. The bad news is that it is a slow and painful process and there is not much you can take to speed it along, and even if you do speed healing that often makes the symptoms much more intense in the short run.

      I got a lot of relief for a long time from CalmPRT. It is better than a Benzo at reducing anxiety and not addictive. It might calm your tremors and shaking. It really is very calming. I stopped taking it because as my nervous system healed it was working a little too well. It began to have the effect of increasing the risk taking nature of my personality. I didn’t know what was going to come out of my mouth when I talked to people! And I was much more agressive when driving. (Might have been an improvement- I usually am too timid and wait a long time to pull out, when I probably could have made it five times.) But since the CalmPRT was having such an effect on my personality I realized I didn’t need it anymore. From the beginning and even at my worst I could not play the organ at church while taking it. I made all kinds of errors but I was really chill about them. They are a forgiving congregation so I still have a job. So you will definitely notice a difference with it, but it isn’t cheap, unfortunately. The main ingredient is rhodiola rosea, so you might want to research that first to be sure it isn’t contraindicated for you for any reason.

      Besides CalmPRT and L-Theanine (an ingredient found in green tea) there is not much you can take that won’t slow your healing or that isn’t kind of risky with side effects and interactions with other things.

      Bacopa Monnieri supposedly helps GABA receptors upgrade (the ones in the hippocampus at least) but it interacts with a lot of stuff and has some side effects. Also, unless you have memory issues you really don’t know if will help any other receptors upgrade so there may be no point.

      Anything that acts on GABA receptors is a no-no because those receptors will not upgrade if they perceive that you have too much GABA– they will not repair themselves. So things like supplementary GABA, valerian or Benzos just slow down your healing. Like a band aid but under that band aid no healing is taking place. If you don’t want to wear a band aid forever I would avoid those things.

      The doctor who treated me post flox said it is a mind game. He taught me to meditate. Whatever you can do to increase parasympathetic nervous system activation and decrease the sympathetic branch is going to help. You need to rest digest and stay out of fight or flight. Easier said than done, but that is the only real answer.

      If I am wrong and the issue is not GABA receptor damage but actual nerve damage, will the things I suggest help? I believe they will. The CalmPRT and L-Theanine can quite possibly provide benefit no matter the cause, because they do provide calming effects, without drowsiness.

      The body’s capability to heal and adapt is amazing. You don’t have to figure out the exact cause to find healing. Getting your parasympathetic nervous system to work the best it can, no matter the cause of the imbalance, is going to benefit you.

      But it is going to take more time and be harder than you expected. You will get there, you will get better over time, but it is all about winning the mind game. Your mind has to tell your body how it is going to be. Eventually, the body will listen.

      Will your parasympathetic nervous system ever function as well as it did before, without needing calming supplements and lots of time meditating? I can’t promise that. My doctor doesn’t think mine will ever be quite the same as before.

      But you can still live a very good and full life! I do! I learned to adapt and take care of myself. And every time I think I must have healed as much as I could, I get a little better.

      So don’t give up hope of a complete reversal, but if it does not come, know that you absolutely can get better than you are now and you absolutely can learn to adapt to any lingering issues. I have and if I can do it (I’m almost fifty!) you certainly can too!
      Ruth

  5. Sarah January 10, 2018 at 10:23 am Reply

    I took cipro almost two years ago, my recovery has been going well, very little tendon pain in my feet and walking normally again. Last Saturday though, I started experiencing extreme tendon pain in my left forearm, I think triggered by overeating gluten. I’m due to have an amalgam filling removed next Tuesday and I’m wondering if I should postpone this until my tendon pain has decreased or gone. I’m just not sure what the release of all those toxins will do to the tendon.

    • L January 10, 2018 at 10:35 am Reply

      Are you having it removed by an holistic (Huggins trained) DDS? They are trained in appropriate removal. Also, when I had mine removed, I was given liposomal vitamin C to ingest just before and just after.

      • Sarah January 10, 2018 at 12:11 pm Reply

        No, it’s just my usual dentist.

        • L January 10, 2018 at 12:19 pm

          I would be very cautious about having it done by any dentist not specially trained in the protocols of safe removal. They have special ways to suction it out and use safe methods. Also, a Huggins trained dentist will not use fluoride or other harmful substances. (When I had mine removed everyone actually wore what looked like hazmat suits, and I was very covered up as well.) Here is a site, if you scroll down it will give you a link to find a huggins trained dds in your area. Mine is a tad more expensive than “regular” dentists but it is worth it to me to have safer options. https://www.hugginsappliedhealing.com/

        • Sarah January 10, 2018 at 1:06 pm

          Hmm, I’m starting to think that I should just keep the amalgam. My dentist is removing it because of sensitivity in the tooth next to it, but I’m not sure this is a good enough reason to replace the filling if there’s no pain in the tooth with the amalgam.

        • L January 10, 2018 at 1:40 pm

          I would wait and have it done safely.

        • Sarah January 11, 2018 at 12:55 am

          Yeah, I’m thinking this might be the thing to do.

        • Ruth Young January 11, 2018 at 3:44 am

          Most people who ended up with mercury toxicity got it from having their amalgams removed, and there is not a 100% safe way to do it, although a bio dentist is better and Huggins trained is probably the best. If the filling itself is not cracked or broken and is still seated correctly in the tooth, I would leave it alone. My dentist and I had this conversation and he said since all my fillings look good at this point, and I’m feeling good (he knows about my bout with Cipro toxicity) my safest course of action is to just leave well enough alone and leave those fillings where they are.

          I really don’t understand how an amalgam is causing issues with the tooth next to it. I would get a second opinion. It sounds like maybe your dentist just wants to make some money by replacing a filling and he is going to needlessly put you at risk to do it. If I ever end up needimg an amalgam removed because it broke my dentist would not attempt it. He agreed that removing them is a risk. Riskier by far than living with them in my head.

          I feel like what my dentist said seems trustworthy and prudent, whereas what your dentist is recommending just feels off somehow. I would definitely get a second opinion and maybe a new dentist.

  6. Kate January 14, 2018 at 12:12 pm Reply

    I am working with a functional medicine nutritionist who recommended I take a REALLY high dose of NAC, 3,000mg, which I did — and had terrible side effects: headache, dizziness, increase in blood pressure. Is this common? How are others using NAC? Thank you!

    • L January 14, 2018 at 12:26 pm Reply

      Hi Kate. Actually my own integrative MD has me taking 3,000 three times a day when I get asthma. Not sure it is really helping with that (and he thinks perhaps the breathing issues are from something else) but even regularly I take 1-3K a day and it doesn’t bother me at all. One thought—there is a time release version. Perhaps that would work better for you? I also would try to make sure that the side effects are indeed attributable to the NAC.

    • Ruth Young January 14, 2018 at 4:43 pm Reply

      I would never take that much NAC. It detoxes you like crazy and can make you herx like there’s no tomorrow. I cannot tolerate it for more than two weeks — same result– feels like a flare. It is helpful in small doses short term and definitely saved my Achilles’ tendons when nothing else was working. It has spared me from needing antibiotics by clearing up upper respiratory crud amazingly well. But I take only small amounts for only as long as needed.

  7. Michaela February 21, 2018 at 5:28 am Reply

    Hi Ruth, you mentioned that you had problems with your teeth. What happened over the months and years? My upper front teeth get this pressure and then they click/move a few times and all is good again. They do this also when I drink/eat something with calcium or sugar. First it was just one tooth, but now 5 are affected. What can I do to stop it? Also, I have the same cold sensation in my hand, and used to have it in my foot also but now it changed to the burning of the skin on that foot. How did that progress in your case and what can be done to stop it. I treat it with Magnesium oil so far.

    • Ruth Young February 22, 2018 at 5:32 am Reply

      Michaela,
      My teeth are still brittle. I chipped on one New Year’s Day when I fell asleep in the bathtub and started grinding my teeth without my night guard in my mouth. It left a horrible sharp edge my dentist ground down for me. It was cutting my tongue.

      One that had chipped during my initial reaction broke off worse. It was sharp for awhile but got better on its own over time. It wasn’t cutting my tongue so I just let the sharp edge wear down over time. I have to be exceedingly careful about always wearing my night guard and not eating hard things like partially popped popcorn kernels.

      My teeth are still slightly more sensitive to temperature than they used to be but it is no longer so bad as to make eating a hot bowl of soup prohibitively uncomfortable.

      My gums were inflamed and that is better. My teeth used to get loose exactly like yours do, and I also noticed it happened a lot when I ate food rich in calcium. At first it happened all the time, then only when fatigued or when I ate and finally it is all but gone.

      Loose and shifting teeth is a sign of magnesium deficiency. When I would take magnesium my teeth always tightened up. I would know if I missed a dose of magnesium because my teeth would be loose and my legs would hurt. I would take magnesium and my teeth would tighten up and my standing tolerance return to normal.

      When I was first floxed I had that temp sensitive neuropathy that you now have. I took magnesium, it went away. After a couple weeks of taking magnesium my doctor said I was probably fine and could go down to just one pill a day or even not take it anymore. Wrong! The sensations of cold came back (along with everything else) but after a couple days taking lots of magnesium the neuropathy disappeared.

      No one can know for sure exactly what is going on in a floxie’s body. Doctors don’t even know. But if I were to hazard a guess, I think you are still very magnesium deficient. So long as your kidneys are healthy, you might want to try getting your oral intake of a good form (I like magnesium malate and magnesium threonate) and continue with the topical as well.

      The safe upper limit is a gram a day. I took 1,200 mg plus soaked in Epsom salts yesterday and I was fine, but I pooped a lot. Dr. Whitcomb told me the gram a day is kind of arbitrary and you can go above that but most people get diarrhea and cannot go higher anyway. He said healthy kidneys clear it really well. You should spread your magnesium out through the day as much as possible though. I used to take some every couple hours. I even broke the pills up so I could take 100 mg at a time, just keeping a steady intake all day.

      There was a time I needed that kind of intake of magnesium– steady, all day long, lots of it. Symptoms returned big time even a year plus out without taking that much.

      Now I do not need my between breakfast and lunch dose of magnesium. Sometimes I forget to take any magnesium during my work day, get home and only realize it when I go to pack pills for the next day and today’s are still in there. But I never felt it. So sometimes now I end up only taking a couple pills in a day. Other days I push it more when it feels right to do that. So far no side effects from too much. I guess my body still needs it. But it is no longer a critical need.

      At the time that my legs would hurt and my teeth loosen if I skipped my every two hour dose of magnesium, both a blood test and a spectra cell test said I had sufficient amounts of magnesium in my body. My neighbor Dick, a brilliant biologist, said he does not rely on blood tests. He said if his teeth are not loose he knows he has enough magnesium. He prefers to get his by eating something green, as he puts it. But he does not have an insidious insufficiency of that mineral created in his body by a chelating agent. We need to work pretty hard to fix that situation– but I am proof it is fixable.

      Yesterday at lunch recess at the school where I work I ran a race against a bunch of kids and actually beat them all. I did that with no magnesium before breakfast and before I ate lunch. I felt good after doing it and walked around the school two times before going in for lunch.

      I went from a ten minute standing tolerance and not being able to delay any meal or miss any of my supplements, to being able to run the fifty yard dash with those kids on an empty stomach, having taken a fraction of the pills I used to take every day.

      So you can get there, with patience and time. The only thing for me that appears to not be reversible (or not entirely) is the demineralization of my teeth. But I am getting older too. Teeth being more brittle may just be a sign that I am about to turn fifty. I have that age related presbyopia big time now, and that has nothing to do with Cipro and everything to do with being fifty.

      Maybe check out Dr Carolyn Dean’s magnesium supplement. It is a liquid and supposed to be very well absorbed. I think if you get more magnesium into your body you will feel like a new person.
      Ruth

      • Michaela February 24, 2018 at 3:43 am Reply

        Thank you for your quick reply, Ruth! I will increase my magnesium intake, and hopefully with time the symptoms will go away.

        I was hit with painful peripheral neuropathy the other day. I am 5 months out, and was hoping things would get better with time, and now this. I have added Alpha-Lipoic Acid 600 to my many vitamins yesterday. Hope that helps.

  8. A February 23, 2018 at 6:15 am Reply

    Hi Ruth
    Do enzymes like serratiopeptidase work for floxed tendons…seems they are used quite often for other types of tendonitis

    • Ruth Young February 23, 2018 at 7:46 am Reply

      I did not use those so I don’t know. I know that some floxies take them and that is all I know. I don’t know what they take them for or if they work. I do know that floxie tendinitis is usually not tendonitits at all but tendonosis. -itis means inflammation, -osis means abnormal formation. So at a guess I would say that what people do for tendinitis is not going to work for floxed tendons, at least not most of the time.

    • Ruth Young February 23, 2018 at 7:48 am Reply

      What worked for my tendons was two weeks of NAC twice a day and later the addition of that micronized purple rice supplement I mention in my story. Those are the only things that caused me to notice a marked improvement in reduction of pain and improvement in function.

      • A February 23, 2018 at 9:13 am Reply

        How much NAC were you taking Ruth…would you know a good dose of Coenzyme Q10…im taking 200mg Coenzyme Q10 as i could not arrange Mito Q…and 10mg of PQQ…

        Is too much antioxidant bad…i get a feeling if i take too much it worsens the pain and my heart pounds when I lie down…not too sure my assessment is right though..
        Thanks

        • Ruth Young February 23, 2018 at 10:48 am

          I don’t know how much NAC that was. It was two pills. The bottle said I could take 2-3 per day. I took one in the morning one in the evening when I managed to remember both.

          I think if any supplement makes you feel worse back off on it.

      • A February 23, 2018 at 8:11 pm Reply

        Oh ok…thank you Ruth!

  9. helena March 2, 2018 at 8:27 am Reply

    Hi Ruth! Its actually been a while since i wrote on here asking questions.. i think i have improved since the summer and months have passes but i seem to be stuck with neuropathy on my legs .Thats the only lingering thing i seem to have. Any suggestions?
    Thanks!

  10. Fred June 14, 2018 at 10:27 am Reply

    Hi ruth. Im very inspired by your story. Im currently in a flox right now and dont know what to do. What supplements would u recommend i purchase that helped you the most ?please get back to me.

    • Ruth Young June 14, 2018 at 12:26 pm Reply

      Fred,
      There is no magic formula that helps everyone. What helped me can hurt you. That being said, magnesium was the most important thing I did. I was magnesium deficient before taking Cipro so this may not be you. But magnesium threonate especially helped me. I now take that in the morning and magnesium malate spaced through the day. I get around 800 mg a day usually. The safe upper limit is a gram a day for magnesium. Do not supplement magnesium at all if your kidneys are not healthy. The RDA for magnesium is less than half the safe upper limit. You may not need that much. I did and still do.

      The micronized purple rice mentioned in my story helped a lot and I still take it. It did very noticeable things like helping my tendon and calming my nervous system and even got my blood pressure down, which I was struggling with preflox. The number to call where I order it is (727) 798-8764. I get a free bottle if you go on autoship but I would recommend trying a few bottles before you go on autoship and see if you can tolerate it. Some people get a Herx from it. Drink lots of water, take small very amounts spread through the day. I put a tiny bit (less than a teaspoon) in my water bottle and just shake it up whenever I take a drink.

      NAC saved my tendons. It really did. So you could try a short course of
      N- Aceytl Cysteine. Again, big risk of a Herx. Or worse. Not everyone can tolerate NAC as it is a precursor to glutathione. Start slow. Stop immediately if you feel worse. Do not take it longer than two weeks. Some people say you can take it all the time. You asked what I did and I am telling you I relapse like no tomorrow if I take NAC more than two weeks. It is going to dislodge a lot of garbage including heavy metals if you have that issue. But on the other hand, my tendons were getting very bad, worse every day despite all I was doing. After the NAC they got better, but it still took a year and the purple rice to really heal the all the damage. I got a twinge on my left Achilles climbing on some big boulders two years ago, but nothing since. Otherwise they seem healed.

      Avoid glutathione. Too many floxies are made much much worse, some permanently. Way too risky. I was asked my people harmed by glutathione to please take my story down because I said it seemed to help or at least not hurt me. I am telling you in no uncertain terms not to try it and I would not have had I known the risks. They say it is dangerous for people with amalgams, but there is something else going on there– a genetic piece of the puzzle that we just don’t have. Do not assume that if you do not have amalgams glutathione or NAC are completely safe for you. But the risk with NAC is far less than with supplementing glutathione directly.

      Idebenone was a game changer for me because it treated not only the Cipro anxiety but my preflox clinical depression. It works as well as Prozac without side effects of any kind. However, every female floxie who has tried it and told me about it absolutely loved what it did for their cognition and frame of mind. All the male floxies who tried it said it made them feel weird and they had to discontinue it.

      I would say if I had to quit everything but two supplements I would keep the magnesium and purple rice.

      I have been struggling with my Vitamin D levels. You need Vitamin K and magnesium and calcium (at least through diet) to effectively get those levels up. My flox symptoms get worse when my Vitamin D levels drop. My blood pressure goes back up too, purple rice or not. Something to look into, but I live where we get no sun for much of the year so this may not be an issue for you.

      Everyone’s body is different so you have to figure out what yours needs to heal. What I listed here is what mine needed, but your needs may well be different. Things that other floxies are warning people about are best avoided, even if you read accounts of floxies claiming it was a magic bullet for them. There are things that can backfire on you with serious and long lasting repercussions.

      If your kidneys are healthy (get this checked out, do not assume) you can probably (no guarantee) at least not be harmed by some magnesium and purple rice if you drink plenty of water. You must get Vitamin D levels tested as too much is dangerous.

      If your cells are very damaged you are not going to be able to tolerate any supplements and even most foods will cause you to react, including the micronized purple rice. It won’t work to get nutrients into damaged cells if those cells do not contain the nutrients needed to utilize that nutrition. FQ’s can really strip our cells of all needed nutrients. I would have you contact Sterling Hill if that is the case. Her website is https://mthfrsupport.com/ She has you get genetic testing and often some other tests and she will be able to guide you to a practitioner who knows what order to put things back. The reason (one reason) people react to things is they lack the cofactors needed to absorb and utilize their vitamins and minerals– like trying to take Vitamin D without magnesium and K2. It will backfire. Of course it goes much deeper than that. She gives you a fifty page report. You really know what you can safely take. So if a couple attempts at throwing some stuff at this to see what sticks is not working or making you worse, I would suggest working with Sterling.

      Meditation, keeping a positive attitude and believing you can beat this (eventually) are key. People often overlook that or downplay it, but I think getting your parasympathetic nervous system functioning at a high level is critical. Rest and digest functions are restorative. Fight or flight (sympathetic) function wears the body down over time. Lisa has a book out about improving parasympathetic nervous system function, or how to hack your vagus nerve. I wrote an article about dealing with the psych symptoms which can be found here: https://fqresearch.org/pychological-effects-fluoroquinolone-toxicity

      Good luck and remember that although severe permanent effects are possible they are not the norm. Most people do heal, at least to the point of being able to live a fairly normal life. There is no reason to believe you would not be one of them, especially with the information available to you now compared to even four years ago when I got floxed. More and more things are being discovered that help us and the knowledge as to why some backfire from treatments that help others is growing. Research diligently, but take time away just to relax and meditate and heal also. Time is on your side with this and you do not have to do everything perfectly to heal. There is no one perfect formula that must be followed. Stay calm and visualize your body using whatever nutrition or supplements you give it to heal itself. Sounds hokey, I know, but it can’t hurt. Panicking can hurt you a lot. Don’t do that.
      Ruth

  11. Dee June 26, 2018 at 7:45 am Reply

    Ruth, you actually answered my question that I had asked Lisa on her story about swimming in pools and soaking in hot tubs after being floxed. I appreciate you getting back to me about your experience getting into pools after floxing. I was told it may not be a good idea because chlorine and bromide are halogens and of course fluoride based chemicals which we would absorb into our skin and possibly cause flare ups. Of course this scared me but also made me angry at the same time that I couldn’t enjoy a cooling swim or soak in a comforting hot tub! I have not gone for a swim yet but I plan to soon and will hope for the best that I will feel better and not worse after a nice swim! So I am keeping my fingers crossed!!! I have chatted with you several times this past year and you have always been so helpful and supportive!! Always appreciated Ruth as you have given me good information and much support and encouragement!! I am now a year out from those 7 Cipro pills I took last June. I have recovered quite a bit from most of my symptoms. I am still dealing with some early morning anxiety and tinnitus and mild neuropathy/joint and muscle stiffness. My stomach is still somewhat of a mess and gives me some diarrhea and discomfort in the morning. I basically am ramped up to 5th gear early in the morning upon waking up and then settle down more throughout the day. I am hoping these last few lingering symptoms will fade away in time. My biggest challenge is the mental aspect. I am still living in fear about what I eat, drink, meds I can take in the future, should I get in a swimming pool or not?? You get the picture! I worry about completely healing and possibly having a relapse. I feel like I have PTSD and don’t know how to climb out of the dark hole. I constantly live in a state of worry and concern about my future. Did you find a way to start to engage in life again and walk away from all of that fear? Any suggestions? Also I have no idea how weakened or damaged my tendons/ligaments/cartilage and muscles are from all of this? I could always walk and had some stiffness, aching and soreness as I recovered and now it isn’t as prevalent as in the early months. As far as I know I have not had any tearing of tendons/ligaments? What did you find helpful in rebuilding your joint and muscle strength. I am assuming that I can rebuild and repair damage done by the Cipro?? I hope!🙏🏻 . So if you could give me any suggestions as to regaining my confidence and reducing my fear about healing and also any suggestions on rebuilding my gut health and strength in joints/muscles I would be grateful. I know that is a lot to answer but any abbreviated or short answers that you feel were primary to your final recovery would be helpful. I have always regarded your support and encouragement as a big part of my ongoing recovery I have had this past year. I hope you know how valuable your input is to many of us floxies fighting this battle! ❤️Dee

    • Ruth Young June 26, 2018 at 6:56 pm Reply

      Dee,
      I know exactly where you’re coming from. That feeling of having PTSD actually got worse for me as I approached my fourth year as a floxie and had another relapse. It just never ends and although most of the time I feel completely normal the downturns can be pretty intense and last for months. And sometimes when I am in one of my long normal windows I still am constantly evaluating my response to stimulation, evaluating whether I am feeling pressure in my face, whether my BP is becoming elevated, whether I feel more fatigued than is normal and a whole host of other questions I really should not be asking during a normal window. I’m aware that I have work to do yet, but I am making progress and I never forget that. I like to pause and reflect on how far I have come in terms of physical strength and endurance.

      I got some free sessions with a counselor through my school district the year I was at that really tough inner city school and I used them. I also signed up for online counseling, which was convenient. I could text my counselor whenever I wanted and we spoke over the phone once a week.

      I also spent my early mornings doing some journaling. My husband gets up early for work but I get to go in late so I made use of that time to process what happened to me. I would do my walking around my back yard while my cat played in his enclosure and then come in and stretch before taking some time to meditate or journal. Every day I had a couple hours just for me to do what was good for my mental and emotional health.

      I think both the professional assistance and taking lots of time to work through this are important. Am I perfectly at peace with it all the time? No. But I feel much more restored to who I really am. Being in fight or flight all the time blocks part of who we are and it stops our emotional healing as much as it stops our physical healing. Having taken a lot of time to cope while experiencing what felt like safe environments to me– my morning walks, journaling alone in my house on the futon that was my safe zone when I could barely hobble around– I feel like my parasympathetic nervous system came back online quite a bit. Oh, I still can get some autonomic nervous system dysfunction, but it doesn’t throw me for an emotional loop because I took time to help myself get out of panic mode.

      I know I am thinking about so many things in a different and deeper way than I could for the first couple of years after I got floxed. While taking a break from working setting up for an upcoming fireworks show I paused to look out over a nearby farm field in the summer sun. I could actually feel that everything was growing– the growth in every plant under that sun– and I knew that was a miracle from God. I had some deep revelations while riding in the fireworks truck for our up north deliveries too and I definitely enjoyed the beautiful scenery much more than I would have been able to when I first got floxed.

      Right now aspects of your personality are blocked because your imbalanced nervous system is so tipped toward fight or flight. Add to that the fact that what happened to you was pretty damn scary, and you have a situation in which frightening thoughts will dominate and comforting, pleasant ones will be hard to come by. If you were facing a life or death emergency you would not be able to sit and ponder corn growing in the sunshine. Your ever alert brain is going to try to save you from danger and will be alert only to danger.

      Some of the change will only come with time, as your nervous system repairs itself. Some you will have to work at, with professional assistance and lots and lots of alone time in a safe environment. Well, alone time worked well for me. I spent a lot of time alone in the woods or ice skating on the lake or practicing my instruments as a kid. So my brain associates being alone with some really good times. Maybe for you you will need times with friends. You have to find what works for you.

      For me, as always in my life, I also turned to Lutheran hymnody. I sang my grief when my first husband died, every night until I was to exhausted to continue I played and sang hymns on the organ at my church, hymns like “When I Suffer Pains and Losses,” “Abide With Me Fast Falls the Eventide,” “What God Ordains is Always Good,” “I Leave All Things to God’s Direction,” and many, many more. Hymns written by Paul Gerhardt who lived through war and famine and lost his whole family more than once. Hymns by Martin Luther who stood upon the objective Word of God even as he suffered with severe depressive episodes throughout his lifetime.

      That is how I get through the fear– knowing that God walks with me and ahead of me, and that no poison can be in the cup my Heavenly Father sends me. The words of all those hymns are woven into my very consciousness and they are a huge source of strength because I am able to tap into the faith and strength found and expressed by people who, though they lived centuries before me, suffered but overcame, feared but found courage.

      It also helps that I have a natural risk taking nature. And to get your life back after getting floxed you have to take some risks. Swimming in a chlorine pool is a risk for us. For some of us. Maybe fluoride toxicity was not a big issue for you. Must not have been for me, because pool chemicals do not cause me any problems. I had a perfectly normal day today. If I was going to relapse from hours in motel pools last week it would be happening now. But it didn’t. You don’t have a guarantee the chlorine will not flare you– but on the other hand, you have lived through flares before. And if it doesn’t flare you you get to do something you enjoy. You will have to be a bit of a risk taker. Embrace that risk instead of fearing it. Taking those risks is how you get your life back.

      I hope that helps. Everyone is different both in what foods and supplements help us and in what will help us recover psychologically. You have to get to know yourself really well. You already listen to your body really well as a floxie and you know it better than most people know their bodies. When you know your mind and heart that well you will truly be on the road to a complete recovery living a full and happy life. Not every physical symptom has to disappear for you to feel well and whole again and free from fear. It will take time and lots of work but you can do it.
      Ruth

      • Dee June 27, 2018 at 1:02 pm Reply

        Ruth, thank you for your thoughtful and informative reply! I guess everyone has to navigate through the mental and emotional recovery to find what will help them cope and give them more peace of mind. For me I guess it is getting past the fear of doing everyday things like eating out at a restaurant, drinking a glass of wine, swimming in a pool and worrying about some medication I might need to take. I don’t think there are any rules as obviously like you said we are all different!! But you do have to take that risk with some things to start engaging in life again! My assumption is that the longer it had been since taking the FQ the less toxic you are and can tolerate more substances that might have aggregated your symptoms the first year or two of recovery? Do you think that is true? I would guess that time will start returning your body back to a more normal state? I was kind of shocked to hear you had a pretty bad relapse at 4 years out?! Was it mostly anxiety related and how long did it last? That is scary to think you can mostly recover and 3 or 4 years later have a serious relapse! Well I hope your relapse was much milder and short lived compared to your initial floxing. I know you have said that you have a very good recovery of your strength in your muscles/ tendons and joints. Do you have any suggestions in rebuilding my strength again and also the strength of my tendons, ligaments and cartridge? I walk with no problems but that is not building a lot of strength. Did you take any supplements to help rebuild or certain exercises? Just trying to regain what I lost in every way!! didn’t you feel mostly recovered in a year??

        • Ruth Young June 27, 2018 at 4:55 pm

          Dee,
          If you want to regain a lot of strength really quickly start working for a professional display fireworks company. That’ll do it. But it’s also painful at times and I have injured myself a couple times from lifting and carrying too much heavy stuff.

          If you want to build strength at a sane and safe pace I would recommend the “Fortify Your Frame” program written by a physical therapist assistant from Florida. You should be able to order it online. I took a class with her back when I was working as a PTA. Her program is for elderly people to help them gain strength, flexibility and functional mobility. Don’t think it won’t do anything because it is for elderly people. After watching the video of her clients we were at first excited to try it and then surprised and how challenging it was. But the important thing is that it is designed to be safe for elderly people so it is therefore probably safe for most floxies. It is balanced and functional with easy to learn exercises. I should be doing it more consistently. The only weakness is that it does not contain a lot of stretching. But she feels that if opposing muscle groups are balanced in strength you do not need so much stretching. Whatever. I stretch.
          Ruth

        • Ruth Young June 27, 2018 at 5:53 pm

          Dee,
          To answer your concerns about relapses. Dr. Whitcomb now feels I may be one of those people whose symptoms cycle forever. The reason is that the massive loss of GABA-a receptors happened for me right at the major hormonal shift that is menopause and the years leading up to it. You actually need progesterone for new GABA receptors to be created. It is possible that even with HRT my body will never quite be able to repair the damage. It was really severe and the fact is I may have had damage from the first time I got floxed that never completely healed. I always felt like I couldn’t handle prolonged stress, even just working a lot of hours, as well as other people. That may have been true before I ever took Cipro. I may be starting from a place that wasn’t all that great in terms of balance between parasympathetic and sympathetic nervous systems. I battled clinical depression for years. There is a reason doctors are not supposed to prescribe fluoroquinolones to people with a history of mental illness. My doctor made that mistake and I may pay the price for it for the rest of my life.

          From even the beginning I have had normal or near normal windows between the times my symptoms were so severe that I couldn’t tolerate fluorescent lights, or looking at a computer screen, or concentrating to type, write or read or listening to the radio while driving. My ability to tolerate normal everyday stimulation has always fluctuated and that has never changed and the downturns also fluctuate in length and intensity.

          About once a year I have a one to three month long period where things get pretty uncomfortable for me and I feel limited by my symptoms. I manage to push through it almost all the time. I missed one day of work two years ago due to flox symptoms and none this past school year. But for three months this school year my blood pressure was climbing in response to doing things. Just being busy doing anything made me feel terrible and overwhelmed. If I sat quietly I was ok. I could even watch tv, which I sometimes cannot do. But I couldn’t write lesson plans, clean my house, do anything without my blood pressure starting to climb so high I could feel it. It was literally awful. I felt disabled in that I could work, being very uncomfortable, but then had to come home and relax. I couldn’t exercise after work for the last three months of the school year, so here I am on a fireworks shoot site with my back hurting because I was too weak to be doing what I have been doing. (It’s getting better– I just lifted too many racks with my right arm the other day so the left side of my back was tight and sore a couple days after that. But it would not have happened if I had been able to exercise as I needed to to prepare for the summer.)

          I was debilitated to a certain extent. Friends were telling me I needed medication for high blood pressure but I knew it was flox related. That feeling of doing absolutely anything being completely overwhelming preceded the BP spikes. Otherwise it was slightly elevated but not more than I would expect from not exercising. I need to do some cardio to keep it in check and I really could only tolerate slow walking and stretching and that only in the mornings.

          Now I feel psychologically better and my BP is still a bit high but not spiking. If I start doing some cardio and watching my sugar it will come down.

          Again, after that downturn, my base line is higher. I am more me. I feel more at ease, more comfortable in my own skin, more able to tolerate stimulation. I really can’t say I have had any flox symptoms to speak of in well over a week.

          This is my life now. Most of the time I am ok or the symptoms so mild and fleeting that I don’t notice them. But there may always be those times that it gets overwhelming and very hard to deal with.

          I can’t change what happened to me. But I know my life is very good now and my floxed friends are huge blessings to me. I know I have been able to help some people. I know that despite being uncomfortable at times I am still succeeding at my job. When I feel good I usually feel very good! I don’t have that torture insomnia more than maybe once a year and uridine always helps it now. It was two and half years that I had that awful insomnia every ten days or so but not that regular so I could predict it, and even uridine only knocked it out 9/10 times. I thought really tortuous nights were going to be part of my life forever, but they weren’t. And today L-Theanine stops that annoying burning I get all over on my skin. It completely stops that symptom and it could not do that even a year ago. So who knows what will happen.

          Two other doctors I see disagree with Dr. Whitcomb and think I can see 100% healing. The truth is it doesn’t matter if I keep having relapses or not. I have a great life. There are worse illnesses than what I have. That’s how I look at it.
          Ruth

  12. Mark Ruff June 27, 2018 at 2:29 pm Reply

    It’s been quite a while since I’ve posted here. I took one pill of Levaquin 500 mg 2 1/2 years ago. It led to widespread tendon tendinopathies, and I’ve since learned that I have (in a genetic twist of fate) widespread joint hypermobility (hEDS) which like fluoroquinolones disrupt healthy collagen production. I’ve been doing PT ever since. the tendons went back to their normal thickness.

    But I’ve just had a sudden relapse, one that developed literally overnight last week. I saw an orthopedist and a PT today, the latter who I had seen two weeks ago. Both diagnosed significant tendon thickening – in the biceps, both Achilles, jaw and even thumb tendons. The PT said he had never seen anything like this in his 25 year career, and attributed the systemic thickening to the FQ use. It became clear to all of us that I am undergoing one of the dreaded relapses many of you have written about in which my symptoms are approximating those of the original floxing. No neurological symptoms, although I’m getting an EMG test next week.

    My question to you all: how long have your relapses lasted? I’m supposed to be going on vacation next week, and I’m a bit worried about the possibility of a tendon rupture.

    Thanks for any advice,

    Mark

  13. Nuz October 23, 2018 at 12:35 pm Reply

    Hi Ruth and thank you for your detailed story.
    It helps people feel so much better.
    I have been floxed 3 months and have everything from joints popping and hurting and neuropathy to blurry eyes.
    My question is; I have been taking magnesium threonate 3 times a day for 3 months now and although I feel better mentally; my joints seem to be getting worse.
    My magnesium intake is 432 mg a day plus I spray magnesium spray on my joints daily.
    Do you think I need to increase the magnesium?
    I am just following what the box says and taking 3 a day.
    I also take coq 10; b12 methyl and D3.
    Thank you for being so supportive in the floxie community; it gives hope to those suffering.

    • Ruth Young October 27, 2018 at 11:02 am Reply

      Nuz,
      Sorry for the delayed response.

      The daily safe upper limit for magnesium is a gram a day. What you are taking is closer to the recommended daily allowance, which is fine if you do not have a deficiency. You can take more.

      I take very little magnesium threonate because it is targeted and goes effectively where I need it to go. It reaches the mitochondria and crosses the blood brain barrier better than other magnesium supplements. I take it only in the morning since it is paired with a stimulating metabolite. I save money by just doing a morning dose, sometimes just one pill.

      My go to form of magnesium is magnesium malate. I like it because the malate part of it contributes to the Krebb’s Cycle and helps my body make ATP (energy.) I take pretty close to a gram a day of that form plus Epsom salt baths plus a little bit of magnesium threonate. So I am technically just over the safe upper limit some days. If I start to get loose stools I back off. So long as your kidneys are healthy you can supplement to around a gram a day and be ok. If it is too much your body will dump it through diarrhea. Spread through the day is the way to take it, not in one big dose. I do best if every two to three hours during my work day I take 100-200 mg of magnesium malate. I was hit hard by the cheating effects of Cipro and definitely deficient prior to taking Cipro. You may not need as much as me. You may find other forms, like magnesium tuarate or glycinate or citrate are better for you. It does not all have to be threonate, which is the priciest form. Just avoid magnesium oxide as it is not well absorbed.

      The popping and cracking of your joints does not necessarily indicated cartilage degeneration. Damage to GABA-a receptors can cause localized muscle tightness. Fluoroquinolones have been shown to be able to cause this type of nervous system damage in some people. NSAID’s increase your chances of autonomic nervous system damage so avoid them. I sometimes had just one muscle or part of a muscle get tight and that definitely would interfere with joint function. Stretching it, massaging it and even doing ultrasound on the area was only minimally effective. It would just tighten up again, usually the moment I sat down to relax.

      Unfortunately, if the muscle tightness is from loss of GABA-a receptors time is the only cure. If it is low magnesium then topical magnesium might help. It can be both, in which case sometimes the magnesium may tighten you uptakes times and other times provide relief. I had that paradoxical response to magnesium in the beginning but I don’t have that happen anymore.

      Your body is resilient. Don’t let the joint snapping and popping worry you too much. It sounds bad but likely your body can take it. I had it too and my joints are as good or better than they were preflox. I think good nutrition and supplements help. Great Lakes Gelatin in the green can is great for joints. It does contain free glutamate so if your nervous system is damaged it could flare you. It never caused a flare for me and it does seem to support my joints well. I have laterally tracking patellae and I actually have less anterior knee pain now than preflox. I think the supplements plus being a little more consistent with exercise and stretching are helping.

      So try not to panic. Just support your body the best you can. It is a bit of trial and error as everyone is different, but most people do get better with time. I turned fifty this year. I would say my GABA-a receptors are not all put back yet and the balance between my parasympathetic and sympathetic nervous system is not fully restored— but I am making progress still. If anything, I think I am finally able to come to terms with what happened to me so emotionally it has been rough. In the beginning I did not have normal emotions.

      Physically I am better than preflox. My joints, my sleep, my energy levels, my strength, my stamina, my cardiovascular fitness — all of that is preflox normal or very close and in some areas I’m doing better than I was prior to getting floxed. So definitely don’t panic.
      Ruth

      • Dee October 27, 2018 at 12:57 pm Reply

        Ruth, I haven’t written you for a long time!! How are you doing? Do you feel like you have finally won the battle?? I know last time you posted that you felt you needed a little more time for your nervous system to completely heal? I hope you feel fully recovered now!! I am 16 months out now and probably 85-90% recovered? I still wake up pretty early everyday with some anxiety, my ears buzzing away and my stomach in overdrive making several trips to the bathroom!! After about an hour or so my day goes pretty well as far as carrying on with everyday tasks! I am sleeping fairly well through the night also as compared to the insomnia I had for months! What do you think caused that early morning hyperdrive? Any ideas on that?? Also I know the GABA receptors were damaged in my brain. I think they are slowly healing but weren’t you the one saying they can take up to 2-3 years to heal?? I am slowly getting better and I pray, hope and wish for “full” recovery!! Any ideas or suggestions on the morning hyper mode and any ideas suggestions on GABA repair in the brain?? I cannot take anything like melatonin or L Theanine as I had a horrible opposing hyper reaction to melatonin which actually caused very severe pulsating throbbing tinnitus at the time. That has improved over the months but not gone yet. I actually think it was caused by my GABA receptors not responding well to the melatonin and doing further damage? Anyway just wanted your input on that. I sure hope this finds you happy and well and feeling mostly healed! Thanks Ruth!!

        • Ruth Young November 1, 2018 at 4:15 am

          Dee,
          Good to hear from you! Sorry it took so long to respond. I’ve been busy with work and always something going on the weekends too.

          I am not 100% recovered yet. Part of it, I am convinced, is PTSD. Part of it is that only recently have I been able to freely cry without a feeling of restriction or brain squeezing sensations stopping it. What did that do to my body to have so much bottled up for so long with no outlet? I suspect it is behind the blood pressure spikes I was getting last year toward the end of the school year and the constant feeling of being completely overwhelmed and just needing a break.

          I feel like my blood pressure is better now. I’m afraid to check it because if it is still high I am going to get upset with myself. I have felt better since adding back in more fermented foods, doing some good heart pumping cardio a few times a week and continuing to take the purple rice supplement as well as adding other purple food to my diet. It seems like I need to do all those things to control my BP but I have no proof they work beyond my feeling good because I just cannot being myself to check my blood pressure.

          I still have anxiety at times but it actually feels like anxiety and is related to actual things going on. The early Cipro anxiety was so over the top that I hesitated to call it anxiety and it came over me mainly when I should have been feeling relaxed.

          I find myself crying without even realizing I am doing it: during yoga class for teachers after school, while playing a much loved hymn at church on the organ, hearing a favorite song on the radio. I don’t know what I am crying about and I don’t sob or even feel sad really. The tears just flow. Maybe they are tears of relief? I don’t know. I find myself recalling Tennyson’s famous poem, “Tears, idle tears, I know not what they mean. Tears from the depth of some divine despair, rise in the heart and gather to the eyes in looking on the happy autumn fields…”

          But Tennyson knew exactly what he was crying about and most of the time I do not. I was widowed when I was 25 years old and I will tell you that the experience of being floxed has been far more difficult to come to terms with than that loss ever was. Maybe this is because my normal emotions were stunted or blocked through so much of this experience. As I reach the tail end of it I find my journey just beginning in some ways.

          But I am continuing slowly to improve. I feel more and more like my old self, more comfortable in my own skin most of the time and I have been working out and gaining back a lot of the muscle I lost to Cipro nearly five years ago. I can do push-ups again!

          I do believe exercise stimulates GABA receptors to come back. I also believe their healing is placed on a back burner if other issues are more pressing and must be healed first. After intense exercise I feel amazing, but by the afternoon of the following day I will experience burning all over again. The minute I start doing intense exercise like running or lifting a heavy weight or doing a plank the burning stops. So long as my muscles are a bit sore it stays away. When my body recovers from the hard exercise it comes back, sometimes with other symptoms common to people experiencing benzodiazepine withdrawal. I never took a Benzo but I do suspect, like those withdrawing from benzodiazepines, my GABA-a receptors took a hit and are still being replaced.

          Maybe the melatonin stimulated some healing of those receptors for you, since melatonin would relax you normally. A body that cannot relax can get a paradoxical response involving all kinds of uncomfortable symptoms in response to substances that should make you relax. I suspect whatever symptoms it kicked up will eventually calm down again.

          I think the nervous system damage caused by FQ’s can be far longer lasting than we would expect. But I think there is a way back to health, with patience and time. I know I feel more able to process all that happened now, more able to be who I am, even as compared to last year at this time.

          On the way home from evening choir rehearsals and church services I have been blasting 1980’s music on my car radio and just enjoying the drive through the city, admiring Milwaukee’s skyline and the view of Lake Michigan from the freeway. I know that I am just more comfortable, more able to appreciate beauty and to feel joy.

          I anticipate probably another two years before I will be able to say I am 100% healed in every way from what happened to me, including the emotional aftermath, but I am going to get there.
          Ruth

      • Dee October 27, 2018 at 1:12 pm Reply

        Ruth, One last thing. As I am recovering and healing and I continue to read floxie hope off and on so a few floxies talk about relapses and reactions to food, drink, different meds and supplements even strarting up more vigorous exercise! It can be so over whelming and scary weather to eat that or drink this, take a med or supplement, get a numbing shot at the dentist. It almost paralyzes you in fear! Is there a suggestion you have to deal better with that? I know the basics about not taking steroids, NSAIDs, and trying to avoid pharma as much as possible. I’m even scared to go to the dentist and get a numbing shot or eat a chicken or steak dinner out at a restaurant not knowing if the meat had antibiotics! I don’t want to live in this constant state of fear! Do you think as time goes on that yuh have less FQs stuck in your tissues and cells to react and be so sensitive to different foods, chemicals etc???

        • Ruth Young November 1, 2018 at 6:16 am

          Dee,
          I think reactions to foods and supplements have less to do with FQ’s remaining in the body than with loss of healthy flora. Replacing it is way more complicated than just taking some probiotics. I would suggest reaching out to Sterling Hill if you are developing those types of issues. She is a geneticist and will do a consult with you to help you make connections between your genetics, your microbiome and nutrition and supplements that are right for you. Her prices are very reasonable and her knowledge is cutting edge. She explains it this way: your DNA is your engine and your gut bacteria is the oil in the engine. Not all engines take the same kind of oil. Not all genetic makeups take the same type of probiotics. Sterling’s website is https://mthfrsupport.com/ If you really can’t afford a consult or are not able to schedule one with her (her health is fragile and sometimes she has to stop working temporarily) don’t panic. People have healed from multiple food and chemical sensitivities over time, through trial and error, with patience and persistence. I know people who have overcome those issues. Sorry to hear they are troubling you at this late date.

          As far as the exercise intolerance I believe there are a few possible reasons. One is loss of magnesium. Some people who had relapses after adding an exercise program had symptoms that pretty much looked like magnesium deficiency to me. I keep pushing the magnesium, especially now that I am exercising harder.

          Another cause could be exercise stimulating healing of GABA-a receptors. In studies with mice the ones who ran on their little wheels the most had the most GABA receptors while the sedentary mice had the least. According to the Benzo withdrawal sites, when people in whithdrawal are symptomatic they are actually experiencing the most healing. It hurts when the nervous system puts itself back together. During a normal window the body is taking a little break from healing.

          My experience seems to bear this out. The mild flares I get post exercise are most similar to Benzo withdrawal symptoms— like burning or mild anxiety. When I exercise hard enough to get sore the symptoms stop temporarily. My body must be busy repairing muscle at that time.

          Early in the healing process exercise may cause too fast of a repair job to the nervous system and that can be a rough ride. I worked around that through short, sub maximal workouts. I now have added bursts of maximal effort but I keep them and the entire workout short. I don’t do too much right before bed to avoid too much cortisol when I want to sleep. I include a cool down and stretching. I have incorporated yoga into my exercise routine. This is working for me. I no longer do 45 minutes of hard cardio. From what I have been reading that is not really good for anyone and I do not miss it.

          Of course the other possibility is that if someone had a lot of mitochondrial damage too much exercise can exceed their body’s ability to make ATP and cause a flare. Those flares would involve extreme fatigue, staying stiff and sore way too long and getting weaker instead of stronger when trying to build muscle, if they train as hard as a person with normal mitochondria. I am building muscle like crazy and do not get fatigued so I know those are not my issues. Beginning with short, easy workouts is a good way to feel your way through this and be sure your mitochondria can handle what you are doing. Exercise helps create more mitochondria unless a person is really lacking mitochondria, in which case they have to be very careful about exercise.

          For me it has been very easy to tell the difference and I think at times I experienced all three. At first fatigue and running out of energy and getting sore were issues. Symptoms of magnesium deficiency would return. Now my response to exercise is normal except for the burning that sometimes comes back between workouts only to disappear as I begin the next workout.

          I hope that helps as you feel your way through this healing journey. You do not have to do everything perfectly to get well. I did not. I made mistakes. And I am still better than I was a year ago and light years from where I started out.
          Ruth

  14. Fred November 12, 2018 at 12:14 am Reply

    Ruth do you have an email or social media where I can speak to you directly about certain supplements / healing . Thanks.

    • Ruth Young December 23, 2018 at 4:59 pm Reply

      Fred,
      I’m on Facebook. A lot of floxies find me there. Send me a PM.
      Ruth

  15. A.Coleman November 12, 2018 at 8:27 am Reply

    Ruth – hi Dee suggested I post my question from the general forum here too as it sounds like you may have had similar issues with high blood pressure post-flox. I am three years post-floxing.

    Until about six months ago my BP was around 115 over 82 so not perfect but pretty good.
    And this was two plus years after floxing. Fast forward to today. In the last six months my BP has sky rocketed to around 150 over 95. What is even crazier is that a month ago it was 148 over 88. Now I am faced with going on BP meds. Pulse is only 60. I don’t notice spikes like you describe – more the BP has just ratcheted up in the last 6 months.

    I work out regularly and still run three 8 minute miles a week and one 26 minute 5K per week. So, I my cardiovascular system gets a regular work out and seems able to keep up. I usually work out 4 to 5 days a week total.

    My question is this FQ Related or something else? I am C677T MTHFR heterozygote but my homocysteine was good last time It was checked.

    I had been feeling pretty good and lingering digestive issues were nearly over when two months ago I started the second worse relapse I have had. Started getting nerve problems that had gone away over 2 years ago and horrible insomnia returned after sleeping well for the three months previously for the first time post-floxing.

    I had slipped a bit in my Mg supplementation over the summer as I felt better. Then I found out the Mg Glycinate my wife purchased for me at our local coop (not my normal brand) was high in arsenic and stopped altogether for a week or so. Realizing this might be part of my problem about three weeks ago I started up Epsom salt baths again and added in the ReMag (picoMg) solution by Dr. Carolyn Dean. Taking about 500mg of that per day along with 200mg of my traditional Mg Glycinate and using MgCl spray on my legs. So maybe getting close to 800mg of Mg per day.

    Reading your post wondering if the ReMag may be so well absorbed that it is causing some of my problems along the pathway you suspect – though my BP started peaking while I was still supplementing with Mg pretty normally. Or is my improved digestion and my sense of starting to “feel better” a sign that my body is trying to start operating normally and now finds itself is short supply of Mg. I had the Red Blood Cell Mg check recommended by Dr. Dean run in March 2018 and I was just under her desired level.

    Are there any BP Meds I should avoid or consider? I have an appointment with my integrative medicine doc, who believes I was floxed, in a month but I think maybe I should see a regular doctor before then and let my integrative doc make adjustments. Prior to the appointment with the integrative medicine doc I have scheduled homocysteine and RBC Mg tests scheduled along with B vitamins.

    Feedback very much appreciated.

    • Ruth Young December 23, 2018 at 4:05 pm Reply

      Dear A. Coleman,
      Sorry, I just saw this now, for some reason. What you are describing seems similar to my issues. After the spikes in BP stopped happening I was eventually able to go off BP meds and it was perfect for a couple of years. Now I am struggling again. I also am trying to avoid meds but it is a hard fight and nothing seems to really be working.

      L-arginine helped a little. I am adding garlic now. I take 1,000 mg L-arginine with each meal and I have been taking two capsules of garlic (not sure the milligrams) with every meal. No luck yet really keeping it steadily below 140/90. I am getting very disheartened. I have also tried increasing the amount of cardio I do. I got the Inner Balance app from Heart Math at the advice of my doctor, and I am really trying to manage stress and meditate/relax more. Plus avoiding sugar and attempting to lose weight. No luck. I’m still hovering around 140/90.

      The school nurse where I teach (we have become friends) thinks it is stress. Basically PTSD from all I went through getting floxed and then a couple years ago I was at a really rough school. She said unless I get the stress under control no med or supplement is really going to work. I do think I have a habit now of being constantly ready for the other shoe to drop. I find myself constantly evaluating how I am feeling, monitoring my body and my mind to see if I feel “normal.” I am finally to the point that very little if anything is going on, but I still feel like I am cringing, waiting for a blow to fall that never comes, but I don’t relax. I love my job yet I find so much of the time I am consumed with this feeling that I just need a break. I actually took two personal days last week. I never did that before in my life just for mental health when I actually could have worked. I usually push myself really hard. Last year I was spending ten hours on my day off doing stuff for teaching (I am 60% of full time) and I would still have work left. I am trying to learn not to be super teacher but to live in a way that is more healthful. I used to know how to do that. Since I got floxed I constantly feel like I have to prove myself— prove I can do as much as anyone who was not floxed and more. If the school nurse is right my high BP is more about those issues than a flox issue or something wrong with my cardiovascular system.

      The med I took would not work for you. Verapamil slows the heartbeat and lessens the force of the contractions. I needed that because my heart was pounding in my chest all the time so that it just burned. I would feel like I was running. I needed to slow my heart rate down more than I needed to lower my BP once it stopped spiking.

      I don’t know much about BP meds beyond the one I was on for awhile. I would ask first whether anything I was saying about stress building due to the horrible experience of being floxed rings true. If that is the cause meds and supplements are going to be inefficient at getting it down consistently.

      Sorry to hear you are also having this problem. It really sucks and it is very frustrating, I know.
      Ruth

      • A.Coleman December 28, 2018 at 2:20 pm Reply

        Ruth,

        Thanks for replying. I know everyone gets busy so I do appreciate your thoughts. I did go on BP medicine – Losartin 50mg. So far tolerated very well and after a month on it my BP was down to normal ranges 125 / 75. I do think the stress of floxing may have finally caught up with me, especially since this last relapse. I am going on month three of the relapse and maybe, just maybe, starting to head out of the valley though I suspect I have another 6 months to get back to where I was pre-relapse.

        I am going on a paleo diet in the new year. I lost 18 pounds on a Whole 30 diet about 2 years ago. So going to eat super clean for at least three months yet allowing just a bit more bad behavior than the Whole 30 – try to drop 30 pounds and not focus so much on FQ issues. I am probably 85% of pre-flox now, so if I can get to 95% I will “call it a day” and go on with my life. My new hope is to post a recovery story by my 4th year floxing anniversary, which is in about 9 months.

        Hopefully after that six month period ends I will be able to stop the BP meds and move forward at least until I really need them when I am 75. That will be in 20 years from now.

        • L December 28, 2018 at 2:38 pm

          You might want to also try intermittent fasting. (one way is to leave 16 hours between the last thing you eat in the evening and the first thing you eat the next day.) https://www.healthline.com/nutrition/10-health-benefits-of-intermittent-fasting#section5

        • A.Coleman January 2, 2019 at 11:44 am

          L

          Thanks for the suggestion. My integrative medicine doc suggested intermittent fasting on my last visit, but we were running out of time and she didn’t have time to explain it well. I will give it a try next weekend.

        • L January 2, 2019 at 4:40 pm

          Great! I know there are other ways than the 16 hour break, but that seems the easiest to do. I think I may need to do some hardcore water fasting, but would rather do it under my doc’s supervision.

  16. Anna December 23, 2018 at 2:43 am Reply

    Hi Ruth
    How bad is the intolerance to erythromycin post getting floxed? Just wondering as I’m allergic to a lot of needs including amoxycillin. It’s been about 3 months now since my getting floxed.

    I would also like to share something with all floxies here….gas leaks from Air conditioning also causes symptoms identical to a ciplox drug reaction due to the fluoride in the AC gas…happened twice with me this year. So we need to be very careful with that as well and probably all sources of fluoride.

    I discovered a great antioxidant eye drops by the name of C NAC (n acetyl carnosine) that helped a lot with the eye symptoms and possibly saved my vision

    • L December 23, 2018 at 10:43 am Reply

      The NAC eyedrops may help with cataracts and perhaps floaters. They will not “save” your vision, especially if the flqs have induced macular degeration. Two different brands are Can-C and Vision Clarity.

    • Ruth Young December 23, 2018 at 4:57 pm Reply

      Anna,
      Every person is different. Amoxicillin made my nose run 24/7 without let up like a faucet for three months straight. Dr. Thoth thinks it was a yeast overgrowth because the sinus infection I had cleared and I had three good days and then the faucet. I have not taken an antibiotic since and hope I never need to. If you really need it you need it. No one can predict what will happen. Sorry I can’t guide you. There are natural things you can try but if they don’t work then there you are. Sadly we just don’t really know how close to the tipping point our body is in healthy vs unhealthy flora until we take an antibiotic and find out.
      Ruth

      • tammy gyarmathy December 27, 2018 at 10:16 am Reply

        Hi Ruth !!! You are one of the most encouraging people in this community !! Total breath of fresh air! I am so happy you’re doing so good!!! I was on the fb Floxed group and it really messed my head up caused me so much worry.. felt like it was just too much negativity.. I’m 7 weeks out body wide tendon issues, numbness and tingling, and vision stuff.. was doing pretty good til Saturday and my Achilles is now killing me .. I got NAC but I’m scared to take it. I taking magnesium, c, d, e, amino acids, collagen , milk thistle , probiotic and coq10. Any suggestions and advice would be appreciated!! Keep spreading hope

        • L December 27, 2018 at 11:16 am

          Hey Tammy, I wouldn’t worry about taking NAC. IT is a precursor to glutathione, which we all need. It has so many benefits. Dr. Mercola gives a good explanation here. Just make sure you are buying high quality supplements. https://articles.mercola.com/sites/articles/archive/2017/12/18/n-acetylcysteine-supplement-benefits.aspx

        • tammy gyarmathy December 27, 2018 at 11:24 am

          Thank you L I just heard it can make symptoms worse not up for that atm.. I’ve been able to be on my feet but since this Achilles flare sat it’s hard.. I was gettin up to about 3500 steps a day now I’m toast 😞

        • L December 27, 2018 at 12:44 pm

          Hmm. I have not heard that with the NAC. I have heard that sometimes glutathione can make people react. (Personally, I have had glutathione in IVs, liposomal, etc.) I take NAC frequently because it also helps with respiratory issues. If you are that nervous about it, try food sources. https://www.livestrong.com/article/531520-food-sources-of-n-acetyl-cysteine/

        • tammy gyarmathy December 27, 2018 at 12:48 pm

          Did you have tendon issues? If so how long did it take for them to get better

        • L December 27, 2018 at 1:03 pm

          I had pretty much every side effect you can imagine. The tendon issues were really the least of it for me. I woke up with a golf ball size lump on my inner wrist. Was diagnosed with tenosynovitis. I had that lump for three years. You can still see it a bit. It did not really effect the use of my wrist for very long. I did end up with torn meniscus in both knees. These toxins just gobble through all connective tissue, so you can end up with ruptured tendons, torn meniscus, floaters (from eating through the vitreous.) I would just baby the areas where you are have tendon problems for now and make sure you are getting enough protein in your diet. You might also want to add bone broth, which will help with the collagen. Also antiinflammatory foods or supplements (but no NSAIDS! or steroids).

          And in the event something should actually tear or rupture, please know that there are now great ways to repair them without having to go through surgery. There is prolozone, PRP injections. They help the body heal it self naturally. I went from using a cane, to pretty much doing most of what I was able to do before. And I know if I start having issues again I can just go get another injection, and I’ll be good to go. (takes the body a few months after it to heal.)

        • tammy gyarmathy December 27, 2018 at 1:11 pm

          7 1/2 weeks out and tendons and some numbness and weakness are my only issues this far … affraid I’ll just keep getting worse and become crippled

        • L December 27, 2018 at 1:19 pm

          well we are all different, but my side effects started within hours and hit me very quickly. So I think if you are 7 1/2 weeks out, chances are good you are seeing the worst. Try (difficult I know) not to freak out. I also had number in most of my fingers (which also spasmed uncontrollably) and my toes, goes up to the calves. The numbness in my fingers is completely gone, and I still have some in my toes, but not nearly as bad as it was. Watch your diet, avoid the nsaids steroids and fluoride, and do add in some supplements to help with inflammation.

        • tammy gyarmathy December 27, 2018 at 1:25 pm

          I notice my circulation gets cut off easy like if I’m laying on my stomach and feet hangs off the bed my feet almost go purple eeekkk… yeah my calf started hurting 4 days into takin meds I stopped and started supplements right away..

  17. L December 27, 2018 at 1:19 pm Reply

    numbness not numbers!

  18. Flox January 1, 2019 at 5:32 pm Reply

    Hallo Ruth,
    When did your brainfog resolved?

    • Ruth Young January 1, 2019 at 6:26 pm Reply

      My brain fog went away about four months in. I had difficulty concentrating at times after that but I think that was from being stuck in fight or flight all the time. My ability to play counterpoint on the organ actually got better, but I cannot remember exactly when that started or ended. Like the extra stress hormones when I actually was not nervous helped. And then a couple summers ago when I was feeling the best I had felt since I don’t remember when I actually had trouble concentrating. It is like feeling normal was a huge distraction. But the really serious brain fog, the feeling of not being able to keep my train of thought or remember anything, did not last very long.

  19. Sandi February 7, 2019 at 1:18 pm Reply

    Ruth,
    Your words are so comforting. Your an angel😇
    It’s like your sitting here beside me, holding my hand and I feel your reassurance & God’s presence. My breathing has calmed & a sence of peace comes over me when I read your words. You are a wonderful writer & a beautiful soul. Thank you Ruth❤

    • Ruth Young March 29, 2019 at 5:21 am Reply

      Dear Sandi,
      Thanks so much for your very kind words. Sorry for the delayed response. I don’t think I am getting all my notifications of new comments. But I am very glad that my story helped you. If God has used me to help others going through this tragedy of getting floxed then I am glad and I feel blessed.
      Ruth

  20. Anna February 18, 2019 at 7:06 am Reply

    Hi Ruth…is there any estimate as to how long the mitochondria take to recover from ciplox damage…will we never be able to tolerate drugs like roxithromycin…I completely lost my tolerance to ozone therapy after getting floxed and got symptoms of free radical damage similar to ciplox when I took ozone…..I guess that would mean that the antioxidant mechanism is damaged but for how long…is there anyone here who has tolerated ozone after getting floxed?

    • tammy gyarmathy February 18, 2019 at 8:47 am Reply

      Do you mean ozone iv? If so what was your response? I am suppose to get ozone on Wednesday

      • Anna March 2, 2019 at 6:10 am Reply

        Hi L
        The ozone made the flox like symptoms resurface…the whole getting floxed is nothing but the fluoride in the quinolones starting a free radical Cascade in the body…..Hence it does seem that giving ozone (which is nothing but oxygen free radical) would add insult to injury……I was very keen on the ozone as I also have Lyme and ozone works really well for that ….i tried getting back on ozone twice….but symptoms worsened each time….did you get the ozone shot…how did it go…I’m not sure how it’s working for some floxies…. I guess it’s all hearsay and I would assume incorrect

        • L March 2, 2019 at 10:28 am

          NO, I did not, because I was getting H2O2 and they overlap. But every other floxie, as well as every Lyme patient in my doctor’s office got Ozone routinely, and did well with it. (ditt a patient there for mold exposure) So I am not sure why you reacted badly. This was one of his mainstays.

    • L February 18, 2019 at 10:27 am Reply

      Anna, I did not personally get ozone after floxing because I was getting H2O2 IVs and they have too much overlap, but I know my doctor used ozone (successfully) with the other floxed patients he had. As for how long it takes mito to recover…that is anyone’s guess. The best supplements for the mitochondria are co q10 (or ubiquinol if you are over 40), R alpha lipoic acid, l-carnitine, d-ribose, magnesium, all the Bs.

      • Anna March 2, 2019 at 6:12 am Reply

        Hi L
        How’s the H2,O2 working for you

        • L March 2, 2019 at 10:37 am

          I got it early on to get off steroidal asthma meds.

        • Josh March 13, 2019 at 8:40 pm

          Is there a way to ask you a question about being floxed?

    • Ruth Young March 29, 2019 at 5:15 am Reply

      Anna,
      Sorry, I just saw this. I don’t think I am getting all my notifications of new comments. For me, I would say the mitochondrial damage healed quickly, within probably two and half to three years. I also had damage, I believe, to my GABA system, so that my body continued to have difficulty responding to that calming neurotransmitter, and that persisted longer. I believe I am seeing the tail end of even that now.

      I really believe that at five years out my mitochondria are completely fine. I have a lot of stamina, good energy and I am building muscle strength at a fantastic rate. The gym I go to really focuses on functional strength training instead of just the traditional weight machines and hand weights and it is working! And a lot of fun too!

      But I don’t think you can use anybody else’s time line. How much mitochondrial damage did I have? I never got tested for it. There’s a floxed doctor out there who thinks we don’t feel mito damage unless we had seventy percent of our mitochondria affected. Did I have just seventy one percent affected? No way to know. All I know is I crossed that line and was able to cross back over it into health. So it is possible. But it depends on the extent of the damage, I think.
      Ruth

  21. Dan Jervis March 2, 2019 at 3:33 pm Reply

    Dearest Ruth, I am Dan Jervis, the last one on the long list. Would you please consider sharing your story to CBS 60 Minutes? 60m@cbs.news.com
    WE NEED OUR STORIES TO BE HEARD, Dan

    • Ruth Young March 29, 2019 at 5:53 am Reply

      Dan,
      I just saw this, but I sent them an email just now. Hopefully, they will pay attention and consider doing a story (or several stories) about floxing.
      Ruth

  22. Mitchell March 29, 2019 at 4:30 am Reply

    Hi Ruth do you still have depersonalization and derealization? What about intense body weakness leaves I have those.

    • Ruth Young March 29, 2019 at 5:07 am Reply

      Hi Mitchell,
      The depersonalization went away for me within the first three months or so.

      I had profound weakness so it took a long time to recover the strength I had. I felt within the first several months that my body was recovering, was building muscle normally again, but it still took a very long time to regain what I lost. I had difficulty consistently tolerating exercise for a long time and it was so very easy to hurt myself, because I would underestimate just how much I had been weakened, so injuries held me back at times.

      However, at five years out now I feel like my body is completely normal again. If anything, I’m doing better than many other people my age. I’m fifty. But I can workout, I can lift weights, I can run races with the kids where I teach at recess and even beat some of them. I don’t get as short of breath doing that anymore, but it can make me sore. It’s normal soreness though, what I would expect.

      The gym teacher uses this giant net hanging from the ceiling, but not attached at the floor, for kids to climb instead of climbing up a rope. He can have several kids climb it at once, because it is like they are climbing rope ladders side by side. I climbed up it last year and only got four rungs up and it was extremely difficult. I got very sore. This year I went up five rungs, it did not seem all that hard and I was not sore at all.

      I even feel a lot more flexible. I don’t notice that abnormal muscle tightness anymore. Even if I don’t stretch as much as I should I don’t get debilitated.

      Physically and mentally I feel very much like myself now, probably actually better than I felt preflox. It took a lot of time, but if I can get there, at my age, there is definitely hope for others.
      Ruth

      • Mitchell March 29, 2019 at 9:03 am Reply

        Thank you Ruth . You are kind. I am 32 and I have been floxed for 13 months. I am frightened I still have severe depersonalization and derealization, fog this far out. I also have severe weakness that leaves me home bound. Odd as I don’t have body pains it’s weakness . I also have food sensitivities and breathing issues. It feels like my nasal passage way is clogged at times or occasionally ill randomly get short of breathe. What is the longest a floxie can have depersonalization all of the days blurring together ? Do my symptoms typically leave ? I keep worrying as every floxie I spoke to told me they’re depersonalization was gone at least a year out . Longest I’ve heard of someone having that was 24 months . Any advice would help and I admire your strength .

        • Ruth Young March 29, 2019 at 10:42 am

          Mitchell,
          I don’t know how strong I am— I dealt with the really terrible symptoms only a few months. Many floxies suffer for years. All floxies are strong. I started working with a naturopath on the east side of Milwaukee who acknowledges that and she has been a godsend.

          You may want to try working with Sterling Hill. She is a floxed geneticist studying the connections between genetics, nutrition and probiotics. For a very reasonable fee she provides a fifty page report you can take to any doctor who does not have his head up his butt. You will need a DNA test and maybe other tests. Her website is https://mthfrsupport.com/contact-us/. She is also on Facebook. Her personal assistant’s phone number is on her page. Call him. Don’t message her— she is too busy to keep up with all her messages. I’d love to work with her but I don’t think it would be right to take a spot in her busy schedule that could be used by someone who really needs the help. Her report is really detailed. Don’t freak out. Have a medical professional you can work with to utilize it. Do not go it alone or your anxiety is going to really get out of control. If you have not found that person yet keep looking. I have found quite a few who believed me and were willing to help.

          I am thinking of trying TRS, a form of zeolite that crosses the blood brain barrier. There are a couple Facebook groups talking about it. If you do it start really really slowly. I have not tried it yet, just throwing it out there.

          A naturopath I saw recently who is also an MD said I may have high histamine. You might also. You do not need to have a rash or a stuffy nose to be dealing with a histamine problem. Something to explore, as anxiety and brain fog can be histamine issues. Anti-histamines will not help as they block only some receptors and the others take the brunt of the excess. But you could look into histamine and mast cell issues. Floxiehope has articles about that issue. That doctor actually printed out a floxiehope article for me! How cool is that?

          Remember that there have been cases of people bed bound for years who suddenly recovered, some to 100%. Do not give up hope. I keep seeing more progress as the years go by. I’m much more myself again, much more comfortable in my own skin and much more able to live a productive and happy life than I was even one year ago. Ups and downs are normal and progress can be slow, but it doesn’t mean you won’t get there. Hang in there.
          Ruth

  23. Ruth Young March 29, 2019 at 5:43 am Reply

    Josh,
    Yes, you would type your question about being floxed just like you typed your question about asking a question about being floxed.
    Ruth

    • Mitchell March 29, 2019 at 11:06 am Reply

      Ruth I love that you said floxies are strong 💪🏻 Good that means we DO become strong again !!! Hopeful. I also don’t think brain fog or depersonalization is permanent. It was induced by a drug and as I’m reading through floxie stories seems everyone gets through the fog . Yippie ! Now as for the food intolerances that I have no clue. Haven’t seen many with that …..

      • Mitchell March 29, 2019 at 11:07 am Reply

        Woops I meant to say brain fog and depersonalization isn’t permanent .

        • Dee March 29, 2019 at 3:40 pm

          Ruth, you helped me sooooo much in my early days of being floxed!!! You always calmed me down and reassured me! I am now 21 months out and probably 85-90% recovered. I probably had about 20 symptoms but mostly CNS, brain fog, neurological more so then the muscles and joints. I still had quite a bit of muscle weakness and wasting along with achy joints that is much better. I mainly wanted to write you to tell you how thrilled I am to hear that you feel close to fully recovered and even in some ways a better version of yourself compared to pre flox days! That is wonderful, awesome news to hear!!! It gives me much hope that I will “continue” to improve and heal even at my youthful age of 62!! I still worry about “fully” recovering and especially about taking any future meds other then FQs of course. The last thing I want is a relapse from taking a medication! Have you had to take any meds after being floxed? I’m still dealing with tinnitus although much quieter which came on immediately after a dose of melatonin. I think it was caused by damaged GABA receptors so feel encouraged that yours seem close to fully healed. I figure it will take 3-4 years of healing??? I have some morning bathroom issues(loose)that am still trying to get to the bottom of it and hope with more time it will resolve. Still trying to repair the trauma that it has caused me but everyday I feel more hopeful and confident in moving on with my life. I’m not completely there yet but feel like I’m getting closer to the finish line. I have learned to be patient and gentle with myself. Any suggestions on getting stronger again and gaba receptors repair? I guess time is the biggest healer when you’ve been floxed!! So happy to hear of your recovery!! You inspire me and have been a great support and guide in my healing!!!! ❤️Dee

        • Ruth Young March 30, 2019 at 3:58 am

          Hi Dee,
          I am doing a lot better than last year at this time. I think that has less to do with actual flox damage than with my deciding to take time to relax and heal. I stopped trying to be super teacher. I made a conscious decision to focus on what is good in my life and to avoid worrying about stuff. And I started with a new naturopath who has been very supportive. Too bad you don’t live close by. You would love her.

          You may want to look into histamine issues. I don’t mean allergies. Histamine is a neurotransmitter of the sympathetic nervous system. It also is found in certain foods, leftovers especially. The longer food sits in the fridge the higher the histamine content. Normally this is ok because our body makes enzymes to break down excess histamine. Except many floxies’ bodies do not make these enzymes. My thought is that it goes back again to balance between sympathetic and parasympathetic nervous systems. Why would a body stuck in fight or flight bother to break down a neurotransmitter of the fight or flight nervous system? It probably would not. A little excess histamine would mean nothing if you were in mortal danger. Your body would not waste time breaking it down.

          You can take histaminase as a supplement. It will only help the digestive symptoms, I would think. But your morning loose stools may be a symptom. The list of symptoms from high histamine is huge. I never thought I had that because I didn’t have a runny nose or a rash. But it can also cause anxiety. And it can be implicated in both high and low blood pressure.

          I saw an MD naturopath who was pretty sure my anxiety and hypertension were high histamine. But I could not bring myself to go back to her. She increased my health anxiety! She gave me no credit for the healing I have had so far and when I said that I feel good most of the time she said that was because I take so many supplements and a truly healthy body would not need them. Any time I mentioned a gain she would counter it by naming a supplement I took and say it was because of that. She said every supplement has to be broken down by my liver like a drug. So basically she acted like I did everything wrong. She believed in FQ toxicity but not Benzo withdrawal and she did not believe that FQ’s damage GABA receptors. I never took a Benzo but I have known enough people who went through sheer hell getting off of them, both floxed and non-floxed. Also, too many of my symptoms cannot be explained by mast cell activation alone. And the fact that I can tolerate things like writing and reading and typing and driving and playing complicated music now means some healing has happened. I can cry without it feeling like someone is squeezing my brain. It feels like my GABA system is there or very close to being normal finally. There has been a huge shift recently that has brought me back to being 100% the person I was before I got floxed. She could not understand what I was saying when I said that now I can cry and relax when I am driving and look at a computer screen without my heart pounding. I told her I could not read a book for pleasure for a year post flox and she just stared at me.

          She kept pressing me to say I feel fatigued. But I really don’t. Then she said I am wired but tired but I’m not that either. There was a time. There was also a time I was very tired and had trouble making it through a teaching day. I don’t feel like that now. I haven’t in a long time. But I used to question all the time whether I was tired and whether it might be because my mitochondria were damaged. I finally learned to see the difference between how I felt early on and how it is normal to be a little tired by the end of the week or a little sleepy after a big meal once in awhile or tired playing for an evening service that starts at my bedtime. Well, after she kept badgering me about it, sure enough, being a little tired in situations where anyone might feel a little tired made me anxious again.

          She also kept saying the fact that I don’t fall asleep fast or stay asleep is a huge indicator of health problems. I kept saying that I have been that way since basically birth and I have never needed much sleep. My dad once told me the only time I slept as an infant was when they went out in the boat. I can honestly say my not sleeping much started then. And she thinks she will fix me now? Maybe there is nothing to fix. If I am actually tired I will fall asleep fast. When my body actually needs the sleep I stay asleep all night. She would not believe me when I told her I could get four hours or good sleep and wake up refreshed and feel fine all day. So after seeing her what is normal for me was getting me all stressed out. I just didn’t go back to her. Maybe she could have helped me. But she wasn’t helping me she was hurting me. She hurts a lot of people because she prescribes benzos all the time, long term, high dose— she told me. She thinks they are great. I know a lot of people who went through hell getting off them so I beg to differ.

          I decided it still all does hinge on getting the autonomic nervous system in balance. So I am working on that. Making it a top priority. I’m less productive than I was a year ago, but I am still getting the work done. My lesson plans now consist of telling my principal what I am doing or shooting her a quick email or at most some learning targets typed in my google doc for lesson plans. And that is enough for me to be effective and my principal understands that that is the best I can do. I’m choosing to worry less about the kids’ concerts because it always goes well anyway. I selected easier music for Easter Sunday with my choir, rejecting the piece with the super hard piano part. I am being kind of lazy. Yesterday on my day off I did essentially nothing. Now I am more like myself! I always was kind of lazy, doing the bare minimum to get by and enjoying myself whenever I could. After I got floxed I felt I had to prove to the world I was still useful and productive. But I was not all that productive before so that was not necessary at all. I have done more to help myself by taking more time to relax and not overstressing myself than that doc ever could.

          She did tell me if you take too much progesterone your body might start to make cortisol from the excess. I was taking a lot to cover missing GABA receptors. I backed way off and I actually feel better. Proof my GABA receptors are healed so I do not need it anymore. I may or may not continue with HRT. We’ll see how I do weaning all the way off it.

          I am looking into TRS zeolite detox. Someone told me it can trap excess histamine and that when you decrease your toxic load sometimes the body does a lot of things better. So maybe that will help get my BP down as it still wants to hang around 140/90. But it is not spiking up scary high anymore. I have no anxiety, or just tiny moments of it that I barely notice and only at times normal people might feel it— like after the third class in a row trying to teach first graders and kindergarteners how to play a chord on the ukulele. I mean come on— my job could get to anyone.

          Well, my husband says I have to go because we need to get breakfast and grocery shop. The cat is not the only one around here who gets upset if his routines are interrupted.

          Hang in there, Dee. I think you can heal all the way. Maybe start working with a personal trainer at a gym and let them know you have to go super slow. I think it will help you feel good!
          Let me know how it goes.
          Ruth

        • Dee March 30, 2019 at 8:59 am

          Ruth. Thanks so much for getting back to me with lots of info!! Sorry to hear your first ND was so negative and causing you anxiety. The good news is that you now have found a new ND that seems to be positive and helping you!! That is good to get guidance through the maze of healing this mess. Unfortunately I live in a more rural area of CA so don’t have a lot of good NDd in my local area. I am stuck doing my own research and dependent on other floxies or phone consultations with qualified homeopaths/NDs etc. it is frustrating as this is such a hard maze to sort through. A couple of questions for you. Is there a test for histamine intolerance and is there a supplement for helping you with it if you have an issue with histamine? Are you being treated for it?? I am very glad to hear you are stepping back some and taking the time to slow down and relax. Obviously that has helped you greatly in your healing journey. I am a retired PE teacher so take things slow. I had to retire 6 months after being floxed as I could not return to school to finish out my last semester of teaching. I planned to retire anyway after 38 years but was sad to not finish on a high note and instead crawl away like a wounded sick animal. Life throws you curve balls and we just have to keep crawling until we can finally stand up on our own and start walking forward one step at a time!! That has been my healing journey these past 21 months and I still get knocked down on occasion but feel like I now have the strength to get through this even if it takes me another 2/3 years. I hope for full recovery sooner then that but I will take it as it comes!! I know this is a slow road to walk!! Let me know about the histamine question when you get a chance and also wondering about the progesterone you took to help heal GABA receptors?? Have you had to take any other meds since being floxed? Thanks a million for your response and guidance. Hugs Dee

        • Ruth Young March 30, 2019 at 7:25 pm

          Dee,
          Dr. Whitcomb felt the progesterone would help because I was right at that age where progesterone gets lower but estrogen remains high. Estrogen is stimulating. Progesterone calms things down. With the damage to my nervous system I did not need that hormone imbalance. He also felt adequate progesterone is needed to help GABA receptors heal. I had heard the opposite through sites like Benzo buddies— that since progesterone binds to GABA receptors it could prevent healing. But when I started looking at actual scientific articles and started learning more about how the body works I learned the opposite is true. Progesterone functions a lot differently than say Valerian or a Benzo. It may bind to the GABA receptors but its presence will actually stimulate them to upgrade and removing progesterone will actually make GABA receptors less sensitive to GABA. I found some info from a doctor online who treats a lot of women in Benzo withdrawal and he puts them on progesterone and they stay on it all month. They do not go off it when they get their monthly cycles because allowing progesterone to drop will bring on a relapse. I shared that with Dr. Whitcomb and we decided to do the same thing for me. I just stayed on it all month. I wasn’t really getting a period very often anyway even when I stopped the progesterone during what was supposed to be that time of the month. We increased the dose over time and Dr. Toth increased it more and added a cream. It seemed to be helping a lot. But then I had been getting anxiety quite frequently, and one thing that negative naturopath did tell me was that if you take too much progesterone your body might make estrogen or cortisol out of the excess. So I started taking my pills every other night or every third night and sure enough, less anxiety and I lost a roll of belly fat to boot. So I was on too much. So my next question is, do I still need it at all? If estrogen has come down maybe I do not need it. Still not getting a period even with dropping down on the progesterone but I will get one now because I wrote that. ( I only menstruate when I tell people I don’t get my period anymore. )

          I have not really taken other meds other than amoxicillin a few weeks ago for strep throat. Plaqued up my teeth something awful but I got Life Extension’s probiotic lozenges and that took care of that problem. I hated to do the antibiotic but I was sick as a dog and strep can last two weeks and can have complications. If I didn’t have to work I might have risked it and rode it out anyway, but it’s concert season. I had to work.

          I may have to go on a BP med if I cannot get it down below 140/90. Still need to get to the bottom of why it is high. I was on Verapamil when I first got floxed and tolerated it well for about a year.

          I did try Metformin for weight loss and it worked. This was a few months ago. I showed Dr. Toth an article about how Metformin shifts your gut bacteria to a profile more similar to that found in slim people— it promotes bacteria that are better at helping you process carbs. So he agreed I could try it but just for a little while. He did not want me on it in summer while working fireworks because if you get dehydrated on it your kidneys will shut down. So I did one bottle at half the recommended dose for someone with diabetes and I felt good on it, started dropping weight and kept dropping weight. Until the damn antibiotic. Now I am stalled on the weight loss. Unsure of whether to refill the prescription and do it again— the warm weather is coming and my school is not air conditioned. And Toth was pretty clear that dehydration plus Metformin equals kidney failure. My classroom gets abominably hot— I can barely stand it. Makes me physically ill. So I am not sure if I have enough time to even try again with the Metformin. I am kind of waiting to see if the plateau is just because I have built some muscle— I am still losing inches.

          But to answer your question as to whether I can tolerate medications I would say yes, no problem really.

          It is very cool that you were a gym teacher. In my mind’s eye you are younger, more like about 38. I think teaching helps us keep a younger mind set. I don’t feel fifty.

          So sorry you were not able to leave teaching on a high note. Maybe you will recover completely and go back for a few years. I plan to work until I am seventy, which would be about twenty years at my current school. Hoping to just be able to stay there.

          If they implement mandatory vaccination laws for teachers that will be it for me. Hoping that does not happen as I am fearful of vaccines. Whether that is a rational fear or not we can debate but I am afraid. Too many floxies have been set back by something as simple as a flu shot so I just do not get them. Also, right before I got floxed I was working in healthcare and I had a lot of vaccines in a short amount of time and then a flu shot every year. My health was just tanking prior to taking the Cipro and I chalked it up to natural aging. But here I am post flox feeling younger than I did then. Something caused my health to tank. I will admit my diet was not perfect always, but it was not always bad. I did exercise pretty hard but I find it hard to believe that that was really the underlying cause. Why did I not tolerate exercise I could do just a few years prior? Was it all those vaccines? I just don’t know what to think.

          I think L’s comment on histamine gives more info than I can. That doc could probably have taught me a lot but she was increasing my anxiety and I just don’t need anyone doing that to me.

          Ruth

        • L March 30, 2019 at 10:28 am

          Hmmm.you sure she is an ND? Doesn’t sound like one. I cant imagine them prescribing benzos (and not sure they even can prescribe controlled substances. And I hate how negative she was with you. Every ND that I have seen (three now) has been more like a “partner” in my healing. At any rate, the main reason I wanted to post was the histamine issue. What a frustrating beast that is! And no really good way to tell one way or the other if that is your problem. After ruling out so many other things I thought that this year-long congestion issue was mast cell disorder, which involves major histamine issues. I went to an allergist who treats mast cell and she even said it is very tricky to diagnose and was on the fence for me. I took the first two blood tests and they came back negative BUT they are only good for confirming that you DO have it, not for confirming that you don’t. There are more tests, that eventually end up with a biopsy, so I just thought “ok I’m done here.” She gave me an RX for a compounded medicine–oral ketotifen– (of course, insurance won’t pay for it) and it helped only mildly so again I am unsure if that is what it is. But if you want to learn more about histamine and mast cell issues, Allison Vickery is the go-to. She is in Australia. I read her blog, get emails, and have even seen her posts on facebook sometimes when our paths have crossed. Very knowledgable and seems like such a lovely person. https://alisonvickery.com.au/

        • Ruth Young March 30, 2019 at 6:58 pm

          L,
          Thanks for the info on histamine issues. The naturopath I saw has her MD as well— that is why I went to her. Dr. Toth now works for the City of Waukesha and he closed his practice. If I taught for Waukesha I could see him. I teach in Muskego. And the GP I really liked left Wheaton Franciscan so I have no MD at all now except Whitcomb and he is never in his office anymore. Close to retirement I think. I need an MD. I love my naturopath but there are times you really need an MD. Not many times but some. Like if I want to continue with HRT, which I am not sure I will or not, but my naturopath cannot prescribe bio-identical progesterone.

          That naturopath MD and I did not click at all. I even tested her theory— that I only feel good because I take so many supplements. Dropped everything for a day and I still felt good. I have cut back since then on some things realizing I can. So she was right, I suppose, that my body does not actually need everything I am taking and it is better not to tax my liver if I do not need to. But there are more positive ways to approach that. And to negate all the progress I have made while blaming me for taking too many things… what the hell was I supposed to do? And early on I literally could not function without those things. Idebenone and CalmPRT and Theanine were like lifelines to me and they kept me able to be in the classroom and living my life. I have cut back on all those things. I don’t even take CalmPRT anymore. Progesterone was the last thing I needed to cut back on but I think she lacked the understanding how scary that is to cut back on stuff that was helping you not be tortured every time you tried to relax and overcome with anxiety when you tried to work.

          Thanks again so much for the info on histamine issues. I still think as I keep working on detoxing and on getting my autonomic nervous system balanced everything is going to start working right again. I’ve been doing colonics on the advice of my naturopath— never thought I would do that! But they seem to be helping. She said it is a heavy detox. I would not have tried it early on. But my body seems to be ready now.

          I hope you are doing well and find all the answers you seek as well.
          Ruth

        • L March 30, 2019 at 11:36 pm

          Yeah, I know what you mean. Sometimes you do have to have an MD. I had one I loved—integrative internist and Lyme specialist…and he stopped taking insurance, 😦 But, unless things are different in your state, you ND may still be able to prescribe meds that are not controlled substances. Mine does. I got a compounded estriol from him and I got another prescription nasal spray from a different one. I also had gotten an antibiotic prescription from one.

  24. Andy Perks April 5, 2019 at 3:01 am Reply

    Ruth can you contact me please

    • RuthYoung April 5, 2019 at 6:51 am Reply

      Andy,
      Diego told me you were trying to get in touch with me but the number he sent did not work. Are you on Facebook?
      Ruth

    • Ruth Young April 5, 2019 at 6:55 am Reply

      Andy,
      I found our past conversations on Messenger and sent you a message there.
      Ruth

  25. saskia April 23, 2019 at 3:06 am Reply

    hello ruth,

    what was the main solution for insommnia for you?

    i don’t know if you had the same as i have but i can’t sleep, i fall asleep but then i wake up after sometimes an hour again. because i didn’t want to watch on my clock every time because it was frustrating me so much it couln’t sleep, i collected every clock and watch in the house and when i woke up at night i plugged the pin out and the next morning i could see at what time i had stopped it. so i could see how long i had been asleep, but the time trying to fall asleep i couldnet measure.

    i would realy want to know how to sleep a whole night again. i know every normal human wakes up 2 or 3 times at night even though they don’t notice it, but it looks like i am programmed to wake up 5 or more times a night. it’s realt frustrating. iam a person who always needed much sleep and couldn’t get out of bed at 7:00 and hitted the snooze frequently, so that i am clear awake at night and in the morning is weird. i can feel i am a tired, but not that sleepy and tired you would expect when sleeping not properly, so does this mean i still get enough functional sleep or does this mean my body is under so much adrenaline or something that it’s like if your keep drinking coffee and stay awake or on drugs or something.

    realy what to do?
    i already take magnesium bisglycinate, citrate, vit c 1000mg, multivitamin, probiotic, raspberryjuice with antioxidants and vit e, some days an extra fishoil with D, calcium citrate with D3, floradix elixer (natural fruit based drink which contains b vitamins and iron)

    • Ruth Young June 26, 2019 at 6:09 am Reply

      Hi Saskia,
      Sorry for the late reply— I just saw this. I had similar issues with sleep persisting not just months but years. It got better with some ups and downs along the way, but some of the downs I suspect are related to my being a woman in perimenopause and your post describes about exactly how most of us in that situation sleep.

      I believe that FQ’s damage receptors for our most calming neurotransmitter, gamma amino butyric acid. When the body cannot respond to cues to calm down and rest and sleep it will sometimes throw up a paradoxical response. It gives the only response it can give so instead of releasing chemicals to help with sleep it releases stress hormones like adrenaline. I have experienced it many times.

      Uridine monophosphate helped me when it was absolutely hellish — when trying to sleep or relax caused a myriad of horrific symptoms like all over burning, muscle cramping, heart pounding, roaring tinnitus and terror. Uridine stopped that and I could sleep four hours. Take it with DHA fish oil.

      Cancer cells like uridine so if you have had cancer I would avoid it. I do not take it every day, only when trying to sleep makes me more and more uncomfortable. That happens maybe once or twice a year now. For two and half years it was two to six times a month.

      Uridine has its own receptors in the brain and does some of the same things as gamma amino butyric acid. It allowed me to bypass the damage to my GABA system. It does not work for everyone. But uridine does have the pleasant effect of making you feel more able to tolerate very little sleep. People taking it simply as a nootropic frequently report that about it online. Since I have always tolerated very little sleep without issues I suspect I have more than the usual number of receptors for uridine.

      L-Theanine helps me when my brain just does not want to shut off. It quiets the chatter. It blocks the NMDA or glutamate receptors so that can be useful for those of us with damage to our GABA system.

      Meditating before bed can also help. For a couple years I would not sleep at all unless I spent at least an hour meditating prior to going to bed. It simply takes our systems longer to wind down. It cut into my productive time, but it allowed me to get some rest. I usually did it by listening to music and just focusing on the music. I found Beethoven’s 5th symphony to be particularly useful. By the end of it (all movements not just the first one) I would invariably feel relaxed no matter how lousy I had been feeling.

      Today I am sleeping quite well most of the time and I do suspect the times I don’t have more to do with the onset of menopause or work stress or just not taking time to rest now that I don’t feel like I need to. If I push too hard I don’t sleep but that was true decades before I got floxed.

      I also started TRS by Coseva. It is a very pure and small form of zeolite for detoxing. Floxed bodies stuck in fight or flight do not detox well. If your body is reacting like it is about to be attacked by a bear it cannot worry about detoxing— the bear will get you first. Almost any attempt to force our bodies to detox before we get through the initial stages simply causes a Herx— an overload of toxins released that are now circulating as the body cannot keep up getting rid of them.

      TRS is different because it completely binds the toxins and the kidneys eliminate them. I found it through a Facebook group run by Lizzy Lymon White. She has recovered from Lyme Disease and TRS helped her. It was not the only thing she did, but it has helped a lot. She is very knowledgeable. I would suggest looking into that, unless you are on dialysis. You have to have functioning kidneys to use zeolite for a detox because the kidneys eliminate it. I notice I sometimes have to pee a lot more while taking it. But I did not get any Herx from it. I believe it is helping me eliminate heavy metals from vaccines, amalgams and an exposure to lead renovating my parent’s house as a teen. It is a sub-lingual spray so it gets right into your bloodstream, bypassing the GI tract. Lizzy can tell you more.

      Everything I have tried that worked for me helped me because it worked with my unique nervous system and my unique issues. None of it may help you or all of it might. And of course, floxies can react to anything. The TRS did not cause a Herx but I did get a brief relapse shortly after starting it, which I believe is because getting rid of the toxins allowed my nervous system to make some more repairs. When our GABA system is making repairs we feel it.

      We have neural plasticity. Our nervous system can and will rebuild itself so that sleep and all other autonomic functions improve. What you are dealing with is not permanent. But it takes time to heal. Nerves take a long time to heal. Even our mitochondria have mechanisms for repair, but none of this happens overnight. FQ’s do a lot of damage, including stripping out important minerals like magnesium.

      I think you will see improvement over time as you replace what was lost to the FQ (minerals and antioxidants) and as your body repairs the energy generating capacity of your cells and balances its ability to respond to all neurotransmitters. It has been my experience that the damage done by FQ’s can heal. But it takes a long time, even if you are doing everything right, and none of us do everything right. I ate a huge chocolate muffin in the fireworks truck yesterday waiting for the rain to let up. It was not gluten free. It was not organic. It was choc full of sugar. But I’m still healing, still living my life, and still assuming I will get to 100% healing one day.

      Just hang in there. I am glad that I did. I am definitely enjoying improved ability to rest and relax and my ability to tolerate stimulation and to respond in a normal way (with joy) to everything good in my life is coming back by leaps and bounds. It will happen for you too. It may take a long time, but it will happen.
      Ruth

  26. MJ June 26, 2019 at 1:30 am Reply

    Hello Ruth! Thank you so much for the detailed story. So glad you are doing better. Is there any possible way we can chat on FB? Thank you.

    • Ruth Young June 26, 2019 at 3:01 am Reply

      Yes, I am on Facebook! It might be a couple weeks before I can chat, as it is right in the middle of fireworks season.
      Ruth

      • MJ June 26, 2019 at 10:44 am Reply

        No problem at all. I can always add you and send my issues and you can respond at your convenience.
        How do I find you on fb? Thanks.

        • Ruth Young June 26, 2019 at 2:12 pm

          You should be able to recognize me as my picture is up and there is a picture on my floxiehope story.

    • Ruth Young June 26, 2019 at 3:08 pm Reply

      I’m standing on a bridge and wearing baggy pants and a t-shirt in my current profile pic. Just send me a friend request or a message on Messenger— probably both would be best so I know who you are.

  27. TruthBKnown July 28, 2019 at 9:57 am Reply

    What experiment was this exactly?

    • Ruth Young July 28, 2019 at 12:56 pm Reply

      Can you be more specific? I’m not sure what you are referring to.

  28. Dee August 10, 2019 at 12:25 pm Reply

    Ruth, what a coincidence that I was just going to sit down and write you about getting on with life after floxing emotionally, mentally and spiritually! And then I read your recent update! Boy did I need to hear that!! I have written to you several times and you have always been more then helpful!! I am now just barely over 2 years out and probably 85-90 % healed? Whatever that is worth as how do we really gauge our healing when it is more or less like riding a roller coaster!!! I was writing to ask you how you began the process of healing your PTSD from the trauma of being floxed and then I read your update. It gave me hope and also reminded me that time is the biggest healer! Being patient and brave through the long and bumpy ride is the hard part! I of course still have some lingering issues. Some are on a daily basis like waking up earlier then I would like and running back and forth to the bathroom with and overactive everything!! Some are small flares and relapses of neuropathy, anxiety, fatigue etc. I sleep through the night and my setbacks are way less intense so that tells me that my body is repairing! That in itself gives me hope! I had a lot of Gaba receptor damage so I always looked to you for advice, reassurance and support because you have been there and done that! I read the flox report and weather it is real accurate or not it did state that it takes 5-6 years for FQ to leave your tissues and cells as I think it hangs around and hides out very deeply in your cells. So with that said I think many floxies take 5/6 years to really feel mostly or “completely” healed!! I am so happy to hear that you feel you are finally there!! That gives me great hope for the future!! If you have any tips on dealing with the PTSD I welcome that but I know time is the biggest factor!! I can feel my nervous system healing but oh soooo slowly. Thank you for your inspiration!!

    • Ruth Young August 10, 2019 at 11:19 pm Reply

      Hello Dee!
      Well, a couple days after my update was posted I had a bit of a relapse. I had a return of that uncomfortable insomnia. I have been trying to completely stop the progesterone so I don’t know if it was that or simply healing that was going to happen because of all the exercise I have been getting and the fact that I have almost zero stress right now. I’ve been skipping nights on the progesterone and I was up to every fourth or fifth night and feeling awesome when I just went cold turkey. I got to about ten nights without taking it when I had the relapse. But I have been noticing that how well I sleep does not seem to change based on whether I took supplemental progesterone or not. I can have a great night without it and a bad night with it. So I really question whether it was that and I will keep trying to wean off and see what happens.

      It was frustrating to have that insomnia come back in the middle of the night and then more frustrating when my husband didn’t get why I woke up and was telling me I was stressed out. I was trying to explain how actually I was sleeping deeply when my nervous system decided it could not handle that anymore and started torturing me every time I started to fall back asleep. I took my progesterone then and uridine with DHA fish oil and I fell asleep in about an hour.

      The next day we were heading up to camp for a fireworks show. Even though I was a bit tired I enjoyed the drive up. But while we were prepping some stuff for Saturday’s show my mind was worrying. Why did I have a flare? Did I lie in my update? Am I not really healed? I was in my own little bubble of worry.

      During the whole time some of us were working on our little project (about which I won’t go into detail here because I don’t need to be telling people how to make a fireball happen) a few guys from our crew were screwing around trying to make music by holding a blade of grass in their cupped hands and blowing through it. We had a huge crew since that is the show we donate, so it was perfectly fine that they were just relaxing and entertaining themselves. I heard their laughter but it did not reach me. I kept working.

      But over time the “music” they were making started to penetrate my little bubble of worry and make me laugh. Two of those guys are pretty amazing musicians, and they were putting all their musical abilities into what they called their “blue grass band” and in the process were producing music that was still really really bad but completely entertaining. It went on for more than an hour. Finally, my bubble of worry dropped away and I just started laughing hysterically.

      The same thing happened today. As much I wanted to live in my own little bubble of concern over my recent flare, what I was doing kept pulling me back out of it and into the real world, out of the flox world into the world I inhabited before I got floxed. I swam and biked with my mother when we had a chance to take a break. I noticed through the whole weekend that my strength and flexibility were still amazing. I had some of that burning on my skin the night after the insomnia— but I was still strong and flexible! Focusing on what I have going for me helped, as it always has. Focusing on enjoyable activities and just living in the moment helped.

      I did sleep very well the night after my little flare so that helped, of course, but what really brought me out of anxiety and back to feeling good was simply living my life, doing things I like to do, and being open to what was going on around me. Again, it took a little while, but as the day went on real life popped the bubble of worry and brought me back to myself.

      I think the answer to the PTSD is to keep living, keep doing normal things— and after enough time the normalcy starts to penetrate and drive out the fear and bring you back to who you were before. After your nervous system is pretty much healed, of course. Once you start having a normal response to your environment most of the time to things your brain does start to figure out that, hey, this feels normal. It is ok to laugh. It is ok to enjoy fun things.

      So that is just my take on things at the present moment. It is not a magic bullet or the only answer to coping with what happened to us. But maybe there is something there that will ring true or that you can use.

      I have to go to sleep now in the back of our fireworks truck at the campground after watching literally the best fireworks show I have ever seen (my husband choreographed it to music this year) knowing that tomorrow I will have more time to ride my old bike around camp, swim in the lake and also work hard tearing down the rest of the show. I hope you continue to fine healing and joy.
      Ruth

      • Dee August 11, 2019 at 10:39 am Reply

        Ruth, thanks for getting back to me! I agree that trying to live as close to normal life as possible is the key to moving on and moving past the floxing trauma! I do think time eventually and slowly bring you back! I’m glad your flareup was short lived!!! And who knows it may have had nothing to do with Cipro!! I think we tend to think every bad day or unwanted symptom is connected to Cipro but after so many years maybe it isn’t??? Quick question for you….when did you finally feel like you were done with dealing with most of the fallout of Cipro?? I know you had some setbacks here and there but just wondering when you felt like you had finally walked out of the dark woods?? Also what do you know about alpha lipoic acid?? I am a little over 2 years out and started taking it several days ago and my neuropathy started acting up?? Just wondering if it is connected? Aldo started taking ashgawanda so possibly that although I doubt it? Could be just a coincidence? Hard to wade through this maze of symptoms and different supplements!! One day at a time!! Hope you enjoyed your swimming and bike ride today!!! Thanks for always helping with your wisdom!!! Hugs D

        • Lauren August 12, 2019 at 9:11 am

          Dee, I had the same flaring of PN symptoms when using ALA! I stopped taking it because I was afraid it was hurting rather than helping, and the symptoms subsided. That was about 3.5 months post-Cipro, and I hadn’t experienced many neuropathy symptoms to that point. Now, a month later, the neuropathy symptoms are back and seem to be progressing quickly. I’d like to try ALA again, as it seems to be the most recommended supplement for halting progression of PN, but I’m nervous given the previous experience with it. (You are certainly correct when you call it a maze of symptoms and supplements!)

          I’m wondering if the flare up could be a sign of healing? If so, I’m willing to push through it, but obviously don’t want to do anything that could cause more damage. I can’t seem to find this listed as a known side effect anywhere, aside from a few comments on Floxie Hope. Curious if many others have run into this issue…

          May I ask when the neuropathy symptoms set in for you, and how long they lasted before this recent flare? So glad to see you’ve improved so much with time, and hope you’re feeling well otherwise these days!

        • Dee August 12, 2019 at 11:08 am

          Lauren, actually neuropathy was my very first symptom I got after taking 7 Cipro pills especially on my lower legs! A lot of numbness, burning and pins and needles. I never have experienced pain. It seemed to lessen as time went on and sometimes even disappear!! I have had flare ups off and on over the past 2 years especially feel it when I wake up early morning along with numb toes. IT is fairly mild and with time gets better so in seems to cycle every now and then? I just noticed when I took the ALA it seemed a lot worse? For now I am staying away from ALA. how long have you been floxed?

        • Ruth Young August 12, 2019 at 2:37 pm

          Dee,
          I finally have a minute to get back to you. Unfortunately I do know for sure that my relapse or whatever it was was Cipro related. I never had insomnia like that prior to Cipro. It isn’t really just not being able to fall asleep. It’s been tortured for falling asleep and experiencing pain in response to relaxing too deeply. The night before it happened I also woke up from a nightmare and saw those patterns as I was waking up. That used to happen all the time — I would come out of my dream and be seeing weird geometric patterns under my closed eyelids. Never had that happen pre-Cipro either but Diego says he has had that happen so it must be a flox thing. But whatever was going on is over now. I slept great the last three nights and except for being a bit stiff and sore I feel great.

          I took ALA for awhile and never had any issues with it. In fact, while I was taking it I had zero tinnitus. After I stopped taking it I started getting some tinnitus now and then again, but still less than pre-flox actually. ALA is a chelating molecule, I think. So it could be binding to heavy metals and moving them, but if the bond breaks it could drop the heavy metal so that it is shifted but not removed. NAC is also a chelator but forms weaker bonds. I am no chemist but I guess from what I have seen that NAC holds the heavy metal with one bond but ALA has a double bond. So ALA would actually be safer than NAC for a person with heavy metals but both can cause issues. NAC causes issues for me if I take it for more than a couple weeks.

          The zeolite I take is a binder, which is different from a chelator. If I take zeolite with NAC I can take NAC longer without issues, but I still don’t for other reasons. (I read NAC can harm healthy biofilms because it does such a great job breaking up mucus.) So maybe you would want to drop the ALA and try TRS, the form of zeolite I buy, which is made by Coseva. I really feel like some of my recent improvements are from TRS helping me detox.

          But you are right— it is so hard to navigate the maze of supplements and even nutrition is tricky because people develop sensitivities to certain foods. It sucks. But all we can do is move forward, trying different things after doing lots of research, working with medical professionals who support us and believe us, and going slowly by trying only one new thing at a time and tracking our symptoms.

          I would say I really felt all the way out of the woods at maybe 4 1/2 to 5 years out. During this past school year I started to realize that things that gave me problems last year, like concentrating on paper or computer work, really were not bothering me anymore. And I felt like my normal emotions were coming back even more and I was becoming more able to feel joy. But it is all a process and I have gains and then little set backs so there is no way to pick a date and just say, “This is exactly when everything went back to normal.” Half the time I would think I was all the way back to the person I used to be and then I would have a little flare, after which I was even more my old self.

          Physically, I would say my ability to work out hard and to gain strength really peaked this year. This summer has been really good. Also, this summer I could work super hard and just get tired in a normal way and bounce back super fast. This is the first summer it felt good to push myself and to get really tired. Up until now doing that stressed me out. And sometimes I would get that horrible insomnia in response to pushing myself physically. I guess that did finally happen again— but it took a lot for it to finally rear its head. Hard to explain, but this summer I just felt like I physically came back to being me. And during the school year I emotionally came back to being me. I cried a lot this past school year but the release was welcome and needed.

          I do not believe FQ’s stay in our tissues for years. Months maybe if you are fat like me, but otherwise the half life of the drug is probably accurate. Impaired detox pathways might slow it down, but again, months not years. How could you keep getting clinically significant amounts of the drug being released years after you took it? Just seems far fetched to me.

          But we know both mitochondria and GABA receptor damage heals in cycles. FQ toxicity is cyclical probably because it is usually those two types of damage.

          Also, since we lost a lot of healthy flora we have difficulty processing our food sometimes or a little bit of an undesirable bacteria throws us off big time. It makes more sense to me that a flare is related to one of those three things than it is to FQ’s being stored in tissue or anyone getting an exposure from meat. You need a clinically significant dose and I don’t see that being likely from those sources— FQ leftover in your body or in the chicken you ate. But I could see bacteria in meat that is harmless and not noticed by most people really being able to harm a floxed person. Also, GABA damage and mitochondrial damage cause cycles. If a bus hit you it does not have to stay around to cause damage. It already did the damage and you are left to try to heal. Getting floxed is very much like getting hit by a bus.

          So those are my thoughts and I can at least tell you that whatever little downturn I had is over at least for now. I didn’t stretch enough at camp and I worked and played hard. Then I drove a very long time to get home. So sitting that long stiffened me up, but probably a normal amount for a fifty year old person. I’m still super strong. I was doing stuff today as I unloaded our truck that I know would have hurt me even a couple of years ago but today I was completely capable of everything I wanted to do. I’m also still tolerating typing to you, reading, writing and watching TV in a completely normal way.

          You can find me on Facebook if you want, Dee. My profile pic is currently me standing on a bridge wearing a T-shirt and baggy pants looking younger than my fifty years (it is a recent pic though.) I’m not a big fan of the FB flox groups — too negative— but I love communicating with floxies individually through my page and Messenger.
          Ruth

        • Lauren August 13, 2019 at 7:04 am

          Dee, I was first floxed about a year and a half ago without realizing it. My symptoms then were more mild and delayed by several months, so my doctor and I didn’t connect them to Cipro. I took it again 4.5 months ago, and had a severe reaction 14 pills in. I’m sure I have a long journey ahead of me still, but the recovery stories and community here have been such a huge help. (Thank you, Ruth!) Like you, my feet are definitely worse in the morning. My doctor suggested trying the ALA again, thinking the flare could be a coincidence, but I’m hesitant. I just ordered some CBD, which some have said helps with the tingling and pain, so maybe I’ll try that first. I’ll let you know how it goes! Wishing you continued healing.

    • Madge Hirsch September 20, 2019 at 3:28 am Reply

      Hi Dee – I am not sure the Flox report is right about this 5/6 year thing. And I read on this thread an earlier post of Ruth’s about vaccinations triggering relapses. I believe that for me a flu jab triggered a relapse 11 years after an exposure to Cipro in 1999. If you are 90% healed after a couple of years you are lucky and you might have to settle for that indefinitely rather than worrying about when the 100% will come.

      • Dee September 20, 2019 at 7:16 am Reply

        Madge, well the 5/6 year statement in the report just says that by blood testing they feel that the FQ is almost completely out of your cells/tissues by 5/6 years. Of course your body still can have the fallout and damage from Cipro so I am assuming because of those changes and damage we still can experience symptoms? I am of course skeptical of how we all heal, the time it takes and why some still experience setbacks and flare ups in years after floxing. I don’t think anyone including Doctors have that answer. My guess would be that we are all different in how our body has bounced back and it’s ability to fully heal so some of us continue that healing process for many years along with the damage it has left. I want and hope to believe that as time goes on our bodies do getting stronger and healthier little by little I HOPE!!!🙏🏻

        • Madge Hirsch September 20, 2019 at 1:14 pm

          I did get better on the whole from previous floxings with time ( though not knowing I had been floxed I did nothing ) but I was a lot younger. This time I’m not so sure. My tendonitis in my legs is not improving – if anything it is getting worse. It’s not so bad if I rest but I am a keen gardener and like to work in the garden 2-3 hours a day. Later in the day I pay for all this kneeling and bending with lots of pain and stiffness. I guess I should listen to my body more but I am an achievement junkie and need to feel I have accomplished something!

        • Dee September 22, 2019 at 7:22 am

          Madge, did you get the tendonitis right in the beginning of your floxing so you’ve been dealing with it all along or did it come on months or years later since getting floxed??

  29. ConsiderThis August 12, 2019 at 1:49 pm Reply

    Isn’t it odd so many have the same flare symptoms? How you feel may be an indication of exposure to something toxic or WebMD says:Interactions. If you take any medicines or supplements regularly, see your doctor before you start using alpha-lipoic acid. People with diabetes need to be especially careful. Using it along with diabetes drugs could make blood sugar levels drop too low. Alpha-lipoic acid might also decrease the effect of some chemotherapy drugs. It could also interact with certain antibiotics, anti-inflammatories, tranquilizers, vasodilators (used for heart disease or high blood pressure), and drugs for osteoarthritis.

  30. Fred August 18, 2019 at 11:10 am Reply

    Hi Ruth – Victimized by Cipro earlier this month after UTI. Never imagined this could happen to me Any advice on how to handle the early days?

  31. Mary August 18, 2019 at 5:25 pm Reply

    Ruth, thanks for the recent update. I am about 4 1/2 years out and mostly recovered. I attribute much of my recovery to things I learned from your story. I am forever grateful. One thing you mentioned a year or two back was purple rice. Just wondering if you still take it and if you still think it was or is a big help.

    • Ruth Young August 19, 2019 at 4:05 am Reply

      Mary,
      I am glad my story helped you. I do still take the purple rice. I get it from Kare Possick. She can tell you a lot more about it. Her number is (727) 798-8764. I don’t always take it as consistently as I did at first. It works best if you take a little bit several times a day, so that your body is constantly getting it. Now I put a little in my morning water bottle and often don’t take more after I drink that. It’s hard to keep doing things I did to get better now that I feel better but I should. I am still obese and my blood pressure is not as good as it was shortly after starting the purple rice. I’m going to try to get more motivated to fix those health issues because I figure if I could heal from getting floxed then nothing should really stand in my way if I am really committed to making the necessary changes. I made and stuck to all kinds of healthy routines when I thought my tendons might snap if I didn’t. Sad that it took that fear to make me completely drop sugar. Too bad I started eating it again after six months. I do think nourishing our bodies while avoiding junk food can do amazing things for us. The purple rice is just a highly nutritious very bio-available food. I hope you continue to heal and see good results from it.
      Ruth

  32. Ruth Young August 19, 2019 at 4:52 am Reply

    Fred,
    Rely on information from studies done on fluoroquinolones to learn why and how they harm mammalian cells and then formulate what you feel is the best plan to prevent further damage and potentially turn things around. You can find research studies through searching online plus a lot of them are shared here on floxiehope, often with very good explanations from Lisa. Also, read Dr. Jay Cohen’s last book. I forget the title but it is something about halting the Cipro and Levaquin catastrophe.

    Also, find all the information you can about improving the functioning of your parasympathetic nervous system. Getting out of fight or flight and into the more restorative rest and digest mode is critical. If you don’t remember much about the autonomic nervous system from high school biology, read up on it now. Many medical professionals feel a poorly functioning parasympathetic nervous system is behind a lot of chronic illnesses and even early death. Lisa has a book out about ways to improve Vagal Nerve tone. Get that book.

    Don’t get caught up in trying to find people with similar symptoms to yours assuming you can just do what they did. Symptoms can be the same but the cause completely different because there are multiple mechanisms by which FQ’s harm the human body.

    Don’t get caught up in comparing time lines and assuming because someone else healed by a certain time you should heal in that time frame also. Everyone’s healing journey is their own. Most get better with time but it can take a lot of time. Medical experts who believe in FQ toxicity say a year out is nothing.

    Avoid the Flox Report because it is too small a sample to be statistically relevant. It says right in it not to judge your prognosis based on it but everyone who reads it does and they get very discouraged. Many of the same people who told me they were discouraged after reading the flox report are pretty much healed today so the way they interpreted that report was wrong.

    Be ready to be in this fight for the long haul, fully believing you can win it, but knowing that healing could come in a few months, in a year, in several years or it may even take a decade. But just because you have not healed yet does not mean you eventually won’t heal. Dr. Toth told me that with floxing everything can just go away pretty much overnight and we have no idea why— but it definitely does happen, even to people who had been bed bound.

    Don’t freak out when people say they are so many years out from getting floxed and still have some issues. Probably what they are dealing with at year three is way more mild than what they dealt with in the beginning. Most people say the beginning is the hardest and it gets a lot easier.

    Don’t get upset with people who healed but who admit they have some small lingering issue here or there. Getting floxed is a huge hit to the body. The fact that people can, often in a matter of months, return to being able to function almost normally and work even part time is amazing and a testament to the healing power of our bodies.

    Most healed floxies acknowledge there are some issues that may never 100% resolve, but like me they also recognize that due to healthy changes they have made since getting floxed, in other areas they are 125% better. Don’t disregard healing stories if the person is only 90-99% better years later. If you had a serious car accident you might carry some scars or aches and pains for life but you would be glad to be alive and not disabled. Healed floxies are very glad to be alive and not disabled. When they share their stories and insights with you don’t get upset when they mention little lingering issues or some damage that could not fully be repaired by surgery. When you make it through this storm you will realize those little things do not matter and absolutely nobody’s body is perfect, floxed or not.

    If you find yourself unable to tolerate supplements and unable to eat all the foods you used to eat then Sterling Hill would be a good resource for you. She will need you to take the AncestryDNA test (not 23andme) and schedule a phone consultation with her through her assistant. If she feels she can help you, for a very reasonable fee, she gives you a two hour phone consultation and a fifty page report. She looks at the connections between genetics and medications and foods and probiotics. If you are deficient in certain things the order you put them back in can affect your body’s ability to use what you are giving it. Her website is https://mthfrsupport.com/contact-us/. She intends for you to take that report to your doctor or naturopath.

    In addition to gaining as much background information about FQ Toxicity as you can, search for a doctor or naturopath who will help you. Any medical professional who believes you. My dentist believed me and that helped me to have him acknowledge what happened to me and be looking out for me. He agreed to avoid numbing medication for a minor cavity I had because I did not want to risk any type of downturn to the healing of my nervous system and some floxies have described about a two week flare of neuropathy from a dental visit with lidocaine. He did not downplay my concerns and discussed options with me.

    I have worked with a few different MD’s who believed me and a good naturopath. Also my massage therapist believes me. People with medical training are important because they can tell you sometimes what is flox related and what is probably just normal stuff that would have happened anyway. My training as a physical therapist assistant helped me because when my body tightened up a lot from the nervous system damage it sometimes caused nerves to be compressed. I knew what to stretch or treat with my ultrasound machine to get the tingling to stop. I figured out I did not have nerve damage I just had a nerve that was being compressed. Treating the right area was important. Realizing my nerves were probably fine, just affected by the muscle tightness helped. My massage therapist has been able to help me deal with aches and pains caused by uneven tightness because of his advanced knowledge of anatomy in terms of form and function. You need people with that kind of depth of knowledge on your side.

    You also need a mental health professional because it can really be hard to cope with this experience. They can teach you coping skills that will get you through it. Otherwise, suicide ideation can easily become a coping skill, even for people who never thought they would do that. I have found more than one counselor, both online and locally, who 100% believed me and supported me.

    So that is my advice. Do your research. Form a tentative plan. Seek out medical help. Attend to your mental health.

    Avoid the Facebook groups. There is so much negativity there. You don’t need that.

    Good luck and happy healing!
    Ruth

    • L August 19, 2019 at 9:59 am Reply

      The name of Dr Cohen’s book is “How We Can Halt The Cipro and Levaquin Catastrophe: The Worst Medication Disaster in US History” The title says it all. Sadly, it is out of print and very difficult to find unless you can lay your hands on a used one. I even contacted someone through medication sense website, which is on the back cover, and after connecting with a couple different people, it seems no one was aware of how / who would be able to republish. Perhaps I will give it another shot.

      And I totally agree about getting a health care professional on board. I would ONLY recommend an ND or an integrative/functional MD. After being throw under the bus by 12 different MDs in assorted fields, it was an ND that quite literally saved my life. He started me on IVs; he helped me regain the 36 lbs I lost (I would not have been able to figure out how to use the Betaine HCL which really helped or how to heal my gut); he gave me hope for the first time and he had helped other floxies before me. (Sadly he no longer practices for financial reasons.) But as damaged as I was, head to toe, mentally and physically, I believe the only reason I was able to come so far was thanks to him.

  33. Lizzie August 22, 2019 at 8:36 am Reply

    Hi Ruth,

    I’m so glad to hear you’re doing so well, it give me hope that I will hopefully recover. I’m about 2 months out from taking Cipro for 7 days and I believe I’ve made a couple of improvements since the first few weeks. I have a troubling symptom though that no one seems to know. It’s a breathing issue, I feel like I run out of breath when I talk or laugh. I have plenty of other symptoms too, but this one is particularly worrying.
    Have you heard of this? Xoxo

    • Ruth Young August 24, 2019 at 4:49 am Reply

      Lizzie,
      Actually the symptom you describe is one I have heard many floxies describe. They usually refer to it as air hunger and it can be pretty intense. But I have known some people who got past that symptom and it did not return. So it may be just part of the general autonomic dysfunction.

      I had something similar very early on and it kind of freaked me out— but instead of being short of breath when I should not have been I did not get short of breath when I should have. You know how when you take a brisk walk you start to breathe just a little faster? Not like being short of breath, but you can just tell you are doing something. I took a walk around the block within the first two months (can’t remember exactly when) and that did not happen. I know my body. I should have been breathing just a bit faster. I wasn’t, yet there was no discomfort. But I knew it was not right— like something that should have been happening was not— so I went straight home. Sometimes just sitting I would feel like I was forgetting to breathe. I would have to focus on it. It was like what should have come naturally wasn’t and I needed to consciously focus on breathing.

      I would say that since respiration is an autonomic function and our autonomic nervous system is affected by floxing then things controlled by the parasympathetic nervous system can just go all wonky for awhile. I had a brief period with super dry eyes too, but that was at like a year out. The feeling that I was not breathing enough lasted only a short time. You may find that your air hunger is similar— that it may resolve soon and not return or only rarely for very short periods. No one really knows, but that would follow the pattern I experienced and one other floxie I communicate with.

      I would say though it feels really awful it is probably not actually harmful. If it gets really bad you can go to the ER and get checked out. I was in the ER a few times in the early days. They said I was healthy and everything was functioning normally. Yeah, right! But I got better eventually and I am confident you will too.
      Ruth

  34. Attila Sipeki August 23, 2019 at 2:06 pm Reply

    Hello Ruth! Great progression 🙂 Im pass now only my 20th month after poisoning of fluorine. My gaba in the brain is still weak, I feel like after a forest fire when cleaning up and it looks like little trees are starting to grow.

    During the day I’m anxious and weekness in my body, but when i hit 4pm the symptoms starts fading, and at 9pm I’m my old self again and tinnitus is also vanish. That’s why I’m happy for the evenings. I think I have windows.

    • Ruth Young August 24, 2019 at 4:36 am Reply

      Dear Attila,
      That you are having windows is a very good sign. I kind of had the opposite experience— mornings were always weird but once I got going I felt ok. The main part of the day would be ok but over time things would start to build. Trying to fall asleep was always a struggle, sometimes worse than others so that I actually kind of feared going to bed. I’m glad now to feel normal pretty much all the time. Sometimes I expect the anxiety to return in response to work stress or hard physical work, but it doesn’t.

      Happy healing and I hope you continue to improve and catch longer and longer windows until it all just goes away.
      Ruth

      • Fred S August 24, 2019 at 5:23 am Reply

        Hi Ruth – I am interested in some of the things you did to improve your tendons. You mentioned NAC helped with the tendons. Are there any other things that have helped?

        Thanks in advance.

        • Ruth Young August 24, 2019 at 2:15 pm

          Fred,
          The NAC was the only really effective thing in the early stages and there is actually clinical evidence that it can protect tendon cells from fluoroquinolone damage. Later on the purple rice supplement helped, when it just seemed like it never healed all the way. It was not getting worse. But I was just stuck with a tendon that got sore if I pushed it even a little bit. Within two weeks of starting the micronized purple rice I could run uphill without pain. I buy it from Kare Possick. Her number is (727) 798-8764. She can tell you more about it. It is just food, but a highly nutritious and very bio-available food. I still take it.
          Ruth

        • Fred S August 24, 2019 at 2:32 pm

          Thanks, Ruth. Is the purple rice supplement a pill or is it rice that you eat with your meals each day?

        • Ruth Young August 24, 2019 at 2:59 pm

          Fred,
          You can get it in pills but I prefer the powder. It is milled really small so that it can get into even damaged cells. I put a little in my water bottle and then shake it up every time I want to take a drink. You can put it in your food too— but you do not need much. I started at one teaspoon a day, spread throughout the day. It is more important to spread it through the day than to take a lot at once. It seems impossible that it could do so much but it really helped me a lot.

          Remember that this is not medical advice— it is more like reading a customer review of a product. If I had read customer reviews of Cipro before taking it I never would have taken it. So they have their place. But they are not the same as actually consulting a medical professional about your specific issues.
          Ruth

        • Fred S August 24, 2019 at 4:27 pm

          Thanks, Ruth. Understood. It seems that conventional doctors typically do not get it and have nothing to offer in reality. Feels like we are all guinea pigs trying to develop a treatment that works (almost like HIV in its early stages). I bought some NAC and will give it a try (slowly one 600 mg pill) and see what happens. Will see how I feel and continue on if ok. May stop as you suggest after a few weeks. Looking at the purple rice supplement. Will let you know how I make out. Thank you so much for all your ‘reviews’

      • Attila August 24, 2019 at 5:36 am Reply

        🙂 Thank you Ruth! No one except us knows what we are going through. It’s like buying a ticket to real hell and waiting at the train station to finally get back to normal life.

        • Ruth Young August 24, 2019 at 2:04 pm

          Attila,
          You do such a great job describing what happens to us from getting floxed. I love both your analogies, especially the one about the forest fire and new little shoots sprouting up in the devastation. There is still devastation but you can see new growth starting. For me now it is almost all new growth but a few dead trees stand among the new growth, burned and blighted, a memory of what happened. I like your analogy of waiting for a train to take it out of hell too. I often cannot find the words to describe the journey.
          Ruth

        • Attila August 26, 2019 at 1:49 pm

          Hello Ruth! Tomorrow I have to drive 350 miles (twice). This will be my biggest chalange since 2017 december. I hope my brain will be able to handle this trip. The truth is, I didn’t want to travel this year, but my family deserves a vacation. 🙂 So wish me a luck.

        • Ruth Young August 26, 2019 at 6:31 pm

          Attila,
          I will certainly wish you luck on your trip— but I am sure you will do just fine. I think doing normal stuff we would have done had we not been floxed is great for helping us recover. The more we do what we would have done the more we can do it!

          It may be difficult at times and you might not enjoy everything about the trip as much as you would have had you not been floxed, but you will also still find things you enjoy and you will make some good memories. For me, later, when I look back on things I did post flox, I don’t remember the flox symptoms, I just remember doing the fun stuff. I hope you will find this true for you as well.

          Oddly though, if I go places now that I had gone to post flox I sometimes am very cognizant of how much better I am doing now. Being there will bring back memories of how I felt then and I realize how far I have come. The trip will be a good thing for you.

          It takes a lot of courage to decide to travel even though you don’t totally feel up to it. You can do it though. Most of the time I think we are way stronger than we know and can do much more than we think we can.
          Ruth

  35. Dee August 25, 2019 at 7:35 am Reply

    Hi Ruth!, in your 5 year update you mentioned that your cortisol levels seemed to be returning to normal again. I’m a little over 2 years out. My adrenals are still acting up. I wake up early with a lot of anxiety. As a matter of fact it actually wakes me up. I just want to sleep in and wake up feeling calm and peaceful. Do you think time was essentially your healer for that or was there something you did or took that you felt helped your adrenals heal?? As always, thanks you Ruth!!

    • Ruth Young August 26, 2019 at 6:34 pm Reply

      Dee,
      I think there is no substitute for time on this one. Some supplements helped a little, like CalmPRT— anything that blocks cortisol is helpful— but not a cure. Only time really helped bring me out of that fight or flight state. I feel like I am getting more balanced without having to take supplements to offset the extra cortisol. It took a lot of time to get there.
      Ruth

      • Dee August 27, 2019 at 7:04 am Reply

        Thanks Ruth! I had a feeling you would say time and somehow I knew that. I guess I have to buckle my seatbelt for now and hang on. I was just hoping by a little over two years this would come to an end. I am still much much better but just tired of lingering symptoms and flare ups. I guess I may take awhile longer?? Argh…..

  36. Attila August 26, 2019 at 1:49 pm Reply

    Hello Ruth! Tomorrow I have to drive 350 miles (twice). This will be my biggest chalange since 2017 december. I hope my brain will be able to handle this trip. The truth is, I didn’t want to travel this year, but my family deserves a vacation. 🙂 So wish me a luck.

    • Attila September 2, 2019 at 11:17 pm Reply

      Ruth 🙂 i made it! I drove 745 miles and I did quite well. While there were moments when I felt worse because of fatigue, I was finally able to overcome my negative thoughts. Many times I thought about what you wrote and it helped. Maybe I got stronger because sometimes I have almost no tinnitus. I know I’m not quite right yet because of my difficult weeks, but I won’t give up. I was an impatient person, but I have learned to be patient today, and if I can’t do anything about it, at least I’m not nervous. Maybe a heavenly admonition for what I should become.

  37. Fred S September 10, 2019 at 7:01 pm Reply

    Hi Ruth – Quick question regarding your ultrasound machine. What type did you buy? Do you feel it helped the tendons? Thanks in advance

    • Ruth Young September 13, 2019 at 6:28 am Reply

      Fred,
      I’ll get back to you soon on this. It is a quick question for you to ask but a long answer if I want to make sure you get the tight machine and know how to use it correctly. We spent days learning about that in the PTA program. I will give you all the info you need this weekend though.

      • Fred S September 13, 2019 at 4:05 pm Reply

        Thank you, Ruth. Much appreciated.

        • Ruth Young September 14, 2019 at 6:09 am

          Fred,
          I got my ultrasound machine from OTC Wholesale online. They did not ask for my PTA license, so you should have no trouble buying one. Mine was around $700. You’ll need to buy ultrasound gel for it also. You cannot use it without the gel. Make sure to get one that has both 1MHz and 3 MHz capabilities. Mine also had two different sized sound heads, which is nice.

          The 1MHz setting is fine most of the time. But for bony areas you want to use 3MHz, because it does not penetrate as deeply. When going over bone you can get a weird feeling from the ultrasound, but normally you should feel a gentle warmth or nothing. If you feel anything else, turn down the intensity or try the 3MHz setting for that area.

          Put gel on the area to be treated, not the sound head. Keep the sound head in contact with your body and keep it constantly moving, but slowly. Treat very small areas at a time, giving yourself eight to twelve minutes per treatment. It takes time for ultrasound to be absorbed. Moving the sound head too fast, trying to treat an overly large area, not keeping the sound head in contact with your body or doing too short a treatment time will prevent you from getting the full benefits.

          Be careful with the sound head. The crystal is fragile. Don’t bump it into anything. Don’t have the machine on with the sound head not in contact with anything. Newer machines will usually turn themselves off if you do that but I don’t rely on that. The soundhead must be in contact with something and moving while in use.

          I like to do ultrasound without heat, so I stay at 0.2 watts/cm2 to 0.8 watts/cm2. My husband likes the heat so for him I am at 1.8 watts/cm2. You can get benefits without heat. For damaged tendons I recommend very low settings.

          Do not use over areas of infection, cancer, metal implants or over a pacemaker.

          That about covers it. I do think it is a good idea and one ER doc who was not a total jerk agreed and said I should keep doing it.
          Ruth

  38. Gina September 12, 2019 at 7:13 pm Reply

    Hi Ruth, why is bad to take GABA?

    • Ruth Young September 13, 2019 at 6:27 am Reply

      Gina,
      Since floxing sometimes damages receptors for gamma amino butyric acid, we want to avoid directly supplementing that, as it may circumvent the body’s natural healing potential of those receptors. If your system is flooded with GABA your body will prune back receptors for it, thinking you have too much GABA. At the very least, too much GABA in the system will slow healing since it will seem to your body that it has enough receptors for it, given the availability of GABA. You want those receptors to come back, as studies have shown that mice with more GABA receptors lived longer than mice with fewer receptors for gamma amino butyric acid.

      Also, supplementary GABA is generally not well absorbed by the body anyway. So if you have been taking it you likely did not do any harm, because it was not bio-available enough to do anything. Just wasted money. Liposomal GABA supplements would be better absorbed, but a lot of floxies cannot tolerate liposomal anything (even fish oil) so there’s another risk, plus the chance the extra GABA will slow healing of receptors for GABA.

      Taking precursors for GABA is probably ok — it just makes sure your body has enough of the building blocks to make it if you need it. I used to know all the components of GABA. I think glycine is one. You would have to look that up if you wanted to supplement the precursors to it just to be sure your body can make enough during this stressful time. Those would be more easily utilized by the body than taking GABA directly and your body will probably not make what it does not need.

      This is the approach Dr Whitcomb suggested to me and I do feel like it worked. It is a very rough road to go down while those receptors are healing. It is like a little trip through hell. But there really is no way out but through it.

      L-theanine helped me, without compromising my healing and CalmPRT helped also. But neither completely took away all symptoms. I don’t think anything can do that without slowing healing or even causing more damage. When our body replaces GABA receptors in a situation where we do not have enough, that is painful. But the process ends. We do get better. We have neural plasticity.
      Ruth

      • Gina September 13, 2019 at 12:38 pm Reply

        Ruth,

        Thanks so much for getting back to me. I have read your story many times. It has given me great hope and the advice has been so beneficial. I was given 10 days Ciproflaxen in April for UTI. I am 51 and have been healthy all my life. I hadn’t even taken a supplement before this. There’s no way in the shape I was in that I could have researched and figured anything out. So this has been overwhelming for me. It’s been a long hard, long journey. I’m am so thankful that God led me to this sight or I don’t know what would have happened. It effected my nervous system mostly. I’m honestly shocked that I’m still alive. The insomnia has been bad. The first few months, I could only sleep an hour. It has started increasing slowly but not very restful. On a Facebook post , a girl posted an article about insomnia and GABA was one of the things suggested. I went to my local health food store and found something called GABA Calm. It has 125 mg. of GABA , 50mg Glycine, 25mg N-Acetyl L-Tyrosine, 20mg Taurine, 5mg Magnesium. I took it and slept all night and it was deep, restful sleep. I’ve used it for a few night now and sleeping really well. Then I was reading through the page on here on anxiety and seen where you recommended that we not take it. I don’t want to do anything to cause myself anymore damage or not to heal, so that’s why I messaged you. Other than this area I am almost healed. Thanks for the detailed reply. You have truly been a blessing in my life!

        • Ruth Young September 13, 2019 at 2:15 pm

          Gina,
          That supplement you took only has 125 mg of GABA— that is not very much. And since GABA is not very bio-available anyway, my guess is the other ingredients were more responsible for the improvement in your sleep. It has some things known to increase calm feelings and it has some precursors to GABA in there— and Dr Whitcomb said precursors to it are ok.

          I am not a doctor and even doctors don’t know exactly what path floxies should take— there are no set protocols for healing beyond avoid junk food, take some basic supplements if you can tolerate them, and give it time. My gut feeling is if you took that supplement once in awhile when the insomnia is really bad, it is not going to hurt you.

          Sometimes we may need to slow healing of GABA receptors a little because while they heal it is total hell. I am a “balls to the wall,” “get it done and over with” type of person. But not everyone can heal at that pace.

          We know exercise helps GABA receptors heal— mice in studies who were sedentary had very few GABA receptors compared to mice who ran a lot on their little wheels. So I have in the past really pushed myself hard, knowing I was pushing healing, but a couple nights later when the torture insomnia hit a part of me would wish I had not hiked up that bluff, or whatever it was I had done that was so good for my body it caused my body to effect some major repairs a couple days later.

          One part of me would think, “Come on, exercise hard every day and get yourself healed.” But another part of me would get terrified of producing those unpleasant symptoms again— so my hikes were few and far between. I didn’t avoid hard exercise entirely. But I realized I could only psychologically handle so much torture.

          When you cannot handle the torture any longer, taking that supplement is not going to be the end of the world for you. It is going to put the brakes on for a little bit and let you rest. That is my thought. Navigating this is nothing but a minefield— you just have to make the best choices you can.

          You may also have that supplement backfire on you at times depending on where you are in a healing cycle. I would have times that things that normally relaxed people, like magnesium, made me very agitated. Some of my worst nights were nights when I took some things before bed that help most people calm down and sleep. It was just like a boomerang effect— like it flew right around and hit me in the butt, causing uncomfortable symptoms and worse insomnia. But other times I could take magnesium or melatonin or whatever right before bed and sleep fine. I healed in cycles, so I did not have a predictable response to many things for a long time. But that did get better. I take magnesium right before bed all the time now.

          Sorry I can’t give you a definitive answer as to what to take or when to take it. While your nervous system is healing a lot of weird crap will be happening and sometimes trying to entirely eliminate those symptoms of healing is counterproductive. But knowing your personal limits for torture is important too. You’ll still get there.

          Just watch out for benzodiazepines— they really knock down GABA receptors more than any natural thing. Some floxies go that route and then have to do a slow taper off of them later. That works for some, but to me it just complicates things. I chose worse symptoms but hopefully for a shorter time and that worked for me overall. I personally am glad I did not try Benzos.
          Ruth

  39. Gina September 15, 2019 at 1:33 pm Reply

    Ruth,
    Thank you for all your insight. I’m not going to take it. I don’t want to slow my progress. I pushed through this far, I’ll just keep pushing. I haven’t been able to get back to exercising. The first few months I had absolutely no energy. No sleep and my nervous system going haywire nonstop kept me fatigued. I have wanted to try to start back walking some but I’m struggling still with weight loss. I lost 10lbs. that I really didn’t have to loose. I’m fighting hard not to loose anymore. I’m only eating antibiotic free meat, vegetables and fruit. I have a real fear to eating anything else. I’ve tried to eat other things but it makes my symptoms worse. I’ve wondered if walking some would start building muscle again and maybe I wouldn’t loose more weight. I just don’t know. This is all so hard and complicated. I just want to do what’s best for my healing.
    Gina

  40. Attila September 16, 2019 at 3:00 am Reply

    Hello Ruth!

    Ruth 🙂 i made it! I drove 745 miles and I did quite well. While there were moments when I felt worse because of fatigue, I was finally able to overcome my negative thoughts. Many times I thought about what you wrote and it helped. Maybe I got stronger because sometimes I have almost no tinnitus.

    AND one strange thing in my recovery… I noticed myself – how do I write it down … as if my old fears had disappeared. For example when I was driving earlier I didn’t dare to drive faster than 80mph but now I can go smoothly at 130mph and I have no fear. Or, I could never type blindly, but now I type without looking at the keyboard, which I admit is frightening since I’ve never learned this. Why?

    • Ruth Young September 20, 2019 at 3:50 am Reply

      Attila,
      Sorry the delay in responding— the school year has me pretty busy again. Wow, where do you live where you can drive 130 mph? That would scare me, although I did once go 100 in mph in my ‘75 Pontiac on a back road when I was young and stupid. Shortly after that my dad was reminiscing about this car he had as a young person and how he went 100 mph with it on a road just outside of the town where he grew up. He said, “You should try going 100 mph sometime just to experience what it is like.” No way was I going to tell him I had already done it. Perhaps some of the reason he and I had so many conflicts was because we were a little too much alike.

      I don’t know about the typing without looking thing but I will say this. Prior to getting floxed I was becoming more and more magnesium deficient. (I now believe this happened in part due to multiple vaccines I received prior to beginning work in healthcare, plus the required annual flu shot while I was in that field, and not just because of too much dieting and heavy exercise as I believed initially.) During the couple of years prior to getting floxed I was having a lot of difficulty playing organ at church because I just felt like I had zero confidence in myself and one of the most devastating consequences of that was a habit I developed of constantly needing to look at my hands and feet while playing. I would then lose my place in the music. After I started getting better from getting floxed my confidence returned and I no longer have that issue of constantly needing to look at my hands and feet while playing. Does lack of magnesium cause that insecurity and having more of that functional mineral resolve it? I don’t know for sure.

      I am glad you are feeling better and doing things you want to do. I think one of the hardest things about getting floxed is overcoming the fear and just trying to live a normal life again. This persists long after symptoms are gone or very minimal. It is definitely a mind game to push past it. I am glad you are winning and taking your life back.
      Ruth

      • Attila September 22, 2019 at 3:43 am Reply

        Hello Ruth! 🙂 Thank you for keeping faith in me and others. This is very important to Us in our battle. I don’t have too many physical symptoms since from the beggining, except that my right arm hurts when I lift something heavy – but I can live with it.

        To me, this journey has caused many mental problems and unfortunately I have to admit there are still aftermath effects. Unfortunately, the fluoride attacked my head so I had and still have some weird moments. I know not as much as 21 months ago, but this is not what it was before.

        I’m trying to push myself forward to focus only on healing, but there are days when the waves hit me, and I feel that won’t end. But a few days later I feel I’m able to defeat this thing.

  41. Cipro2017 October 2, 2019 at 1:08 pm Reply

    dear ruth

    When was the time you started doing sports?

    I am 2.5 years postflox and have a small cycle after I started with training. this manifests itself in restlessness, brainfog, adrenaline rushes and insomnia.

    how was your experience?

    • Ruth Young October 6, 2019 at 3:54 am Reply

      I would have flares due to heavy exercise also. The first time I really pushed myself was about three and a half months out— I hiked up a small bluff in my hometown. Even going really slowly and taking lots of breaks did not prevent the relapse two nights later. Almost every time I exercised hard or for a long time, for around two and a half years but possibly a little longer, I would get that Cipro torture insomnia one to two nights later. When it hit, each time I even tried to relax everything would go haywire. If I exercised or even just took a long walk before bed it would happen the same night also. If the exercise was earlier in the day it was consistently one to two nights later that I would get a very intense wave of symptoms. My discomfort could persist a couple days but always by the third night I could sleep normally again.

      My theory is that exercise upgrades GABA receptors and when those receptors repair themselves we feel it. In studies with mice, the mice who ran the most on their little wheels had the most GABA receptors, compared to sedentary mice who had very few. I found over time that if I kept my workouts short I would be ok. Eventually, I realized I could exercise as hard as I wanted for about ten minutes total but the rest of the workout had to be gentle and easy. I also realized that long workouts, even easy ones, flared me so I kept my workouts to thirty minutes or less, eventually even forty minutes, but never more than an hour. I could still exercise within those parameters.

      For the most part I have not changed how I workout even though I can do more now— I seldom do because I realized that short workouts are sufficient and I can even do them spread through my day. I never really enjoyed being stuck at the gym for two hours anyway.

      The other issue with exercise could be low magnesium. Don’t bother testing your levels as a blood test is useless for this— only one percent of your magnesium is floating around in your bloodstream. Also, FQ’s chelate magnesium. Chelate comes from a Greek word meaning “to claw” so it means magnesium was torn from your body in a way nature would never take it. It took it wherever it could bind with it— from your muscle cells, from your bones, from your tendons, from your teeth and from your brain. It tore it out of places nature would never have taken it even if you were starving. So building up those reserves of magnesium takes a lot of time.

      In the first year any time I did something physical I rubbed magnesium lotion on the muscles I had used. Sometimes I paused during the workout to do this. I took nearly a gram a day of magnesium for five years. I am finally able to back it off a little but I have to go back up if I am working very hard or under a lot of stress. I’ll notice my teeth getting loose and that is one sign of magnesium deficiency. For years prior to getting floxed I asked my doctor and dentist repeatedly why my teeth were loose and shifting around. Neither could find a reason despite loose and shifting teeth being a classic sign of magnesium deficiency. I also had muscle cramps, loud tinnitus, fatigue and anxiety. I thought it was normal aging. But when I took a chelating medication while being so critically deficient in magnesium I found out the truth. Cipro can affect other functional minerals as well so taking zinc and calcium helped me a lot too. I now still take zinc (25 mg) but calcium I get from food, though once in awhile I do supplement it when I am working very hard. Functional minerals are vital to our health and need to be in balance. FQ’s throw that off and post flox exercise intolerance and even some relapses people experience are just functional mineral deficiencies.

      So those are my thoughts. There could be other things going on— but that is what I think is happening. The exercise is causing upgrades to your nervous system, but pushing to much healing too fast is tough to take so lighter and shorter workouts may be in order for awhile. You also want to make sure the exercise is not depleting already inadequate stores of functional minerals.

      You may have read that FQ’s chelate iron, but please do check iron levels before supplementing as too much can be harmful. The others, so long as you stay under the daily safe upper limits set by the FDA, are fine to supplement so long as your kidneys are healthy. Small doses spread through the day are better than a lot at once.

      Just remember flox damage can be very complex and my thoughts are of course formed by my experiences. Continue to seek out information from other sources to learn all you can about what FQ’s do to our bodies— and how our bodies are supposed to function. Some of your research needs to be aimed at building up a foundation of basic knowledge of anatomy and physiology. That will help a lot and will help you understand what you read in clinical research studies on FQ’s. My answer should not be the only thing guiding you as you move forward.

      Hope that helps.
      Ruth

  42. Attila October 24, 2019 at 11:22 am Reply

    Hello Ruth! I would like to ask you how long did you have relapses? Nowadays I have for example a week without any kind of symptoms but next day feeling bad again. Some mild tinnitus, headache and vivid dreams. But for example 30 hours later I feel myself like an old one again for days. Oh those gaba’s 🙂

    • Ruth Young October 26, 2019 at 1:01 pm Reply

      Attila,
      I was four and half years out before I realized I was no longer having relapses. Very early on I would notice that I would have very good or near normal days and then suddenly revert to being very sick again— not being able to sleep at all or even relax, feeling agitated with my heart pounding over the slightest thing. And then later I would go back to feeling ok. Symptoms definitely cycled. But my base line kept going up. It continued to go up even after I thought my normal windows were completely normal. I know that I feel completely normal now. And I definitely do not feel that symptoms are cycling anymore. So there was an end to it.
      Ruth

      • Attila October 27, 2019 at 9:01 am Reply

        For me it’s like I had been out in the pouring rain for 22 months and it was raining every day, but the drops were getting smaller and maybe the rain would stop once and for all. Thank you 🙂

  43. Attila November 19, 2019 at 12:08 pm Reply

    Hello Ruth! There is a girl in my country who got sick a week ago and somehow found my email address. Now I’m trying to help her based on my experience. But I still have cycles, a week good a week bad. The strange is that my sleep was okay in the last 2 month, and 3 days ago my insomnia returned… almost forget 🙂 haha tragicomedy.

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