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. Nan April 18, 2016 at 3:29 pm Reply

    Hi Ruth

    I took cipro in October 2013. I took 3 pills when I had a bad reaction. My joints started to pop immediately. Most of my problems are tendon and joint pain. I’ve been to 3 different rheumys in which 2 out of 3 say RA. I didn’t have a RA factor it was negative but my CRP level was high. I’ve never had tendon or joint pain before so that’s why I really feel like I don’t have RA. Do you know of anyone that has taken cipro and was misdiagnosed with something. I recently had blood work (Cbc) it was good. With the exception of slight anemia in which I’ve had prior to taking cipro. This whole thing is just crazy to me. Also my vitamin d was on the low side.

    • Ruth Young April 18, 2016 at 3:43 pm Reply

      Man,
      It is totally common for floxies to be misdiagnosed. Heaven forbid they would admit it was the drug they gave us that did this to us.
      Ruth

    • Mai December 11, 2016 at 5:48 pm Reply

      Hi Ruth, I sorry I didn’t know where to post so i post in the reply section. I just got floxed and my joints hurt and burning sensaction all over my body. What should I take to get rid of the burning and joint pain. Please help I don’t know what to do now. Thank you

  2. Nan April 18, 2016 at 4:28 pm Reply

    Thanks for your reply Ruth. One of the rheumys that said it wasn’t RA and that he simply didn’t know what it was told me that he wouldn’t recommend me to take any biologics because those types of drugs can cause a lot of unwarranted side effects as well.

  3. Alexandra April 23, 2016 at 4:30 pm Reply

    Thanks for sharing your story Ruth. I can’t imagine how strong you had to be throughout this entire process. I’m 21 and was recently floxed in January, and I was wondering how bad your brain fog was/if you still have it. The fog is by far the greatest fear I’ve had. It’s beyond debillitating, and it’s terrifying having it so young. If you have any insight and any suggestions as to which supplements helped, I would appreciate it so much.

    • Ruth Young April 23, 2016 at 5:20 pm Reply

      Dear Alexandra,
      I don’t have brain fog anymore. It was quite debilitating in the early months. I think taking magnesium helped me with that– over time as I restored magnesium to my cells everything seemed to function more normally. This may or may not help you. I was critically magnesium deficient before taking the Cipro, so that is an area in which I was hit hard.

      Another thing that may have helped is Idebenone. It is more than just an antioxidant. It increases nerve growth factor in the brain and helps the two hemispheres of your brain communicate better. It also boosts serotonin briefly, so for some people it can increase anxiety or insomnia. It did the opposite for me, but I was clinically depressed and no doubt deficient in serotonin before taking the Cipro. So for me Idebenone works very well.

      It is a synthetic and some floxies cannot tolerate it. It was proven safe in a year long study. It is fat soluble so take it with food. I get mine through HBC Protocols. Scroll down for the 50 mg pills. The 200 mg pills at the top of their page are for treating a specific condition. You do not need that much. I now take 50 mg 2x a day with food. I used to take it 3x a day but I am
      getting better.

      It will build up in your system over time as it is fat soluble so I occasionally take a break from it. I found a lot of good things researching it, including protection from certain types of cancers. A different floxie said he found that Idebenone is a known carcinogen, but I could not find any research showing that– only some that showed it to be toxic in very high doses. That would be true of many things and is not, to me, a reason not to take it.

      So it is something to try, but it may or may not work for you. It’s been a godsend for me. I do believe it has given me a bit of a cognitive edge over where I was prior to being floxed.

      At this point I find that I can play organ or piano really well when my symptoms are flaring. The extra adrenaline seems to give me an edge as a musician. But even when I am in a normal window I do seem to be better at playing complicated music when I am taking Idebenone as opposed to when I took a break from it recently.

      It seems like added stress hormones from my damaged autonomic nervous system affect me negatively when I am teaching in the classroom. If I am flaring I find my mind going blank more when I am in front of the kids. This is different from my early brain fog in that it seems to be situational, where initially I was in a fog all the time. CalmPRT is helpful for reducing the anxiety and calming things so that I can function normally in stimulating environments. (I seem to be getting better though– I have not needed CalmPRT in the past month.)

      CalmPRT may be helpful for you if your brain fog is really just from too many stress hormones. Let’s face it, if you were about to be eaten by a bear, remembering somebody’s name would not be a priority. It’s a normal thing and in no way would it mean your brain was actually damaged.

      If you are a musician, like me, do not, I repeat, do not take CalmPRT before you have to play. It blocks adrenaline and it turns out musicians need a certain amount of adrenaline. I took it once before playing organ on a Sunday morning and it was a total disaster. I couldn’t play at all. I felt really relaxed about it though.

      What has helped me is finding ways to cope with times when I know I’m going to have trouble with recall and new learning because it is a stimulating environment. I took pictures of my classes and sat at home where it was quiet looking at the picture and the seating chart until I could consistently connect names and faces. If I am singing a simple, familiar song with them I keep the sheet music in front of me just in case. I may not need to look at it, but it is there just in case. I look over my lesson plan more often instead of relying on memory to know what I planned for a particular day. These techniques have helped convince my coteacher that I do not have early onset dementia!

      Be kind to yourself and do what you need to do to continue to function. Remember that if you get upset with yourself you’ll just increase those stress hormones and make it worse.

      It is very likely you’ll be able to get completely back to normal cognitively. I did. I’m better than normal to the point that sometimes I think, “This is not my brain!” I have never played counterpoint and complicated music the way I can now– it’s like I can multi-task better and understand the music better. When I have a quiet, unstressful environment I acquire new information very quickly– more similar to when I was younger. Whether it is the Idebenone or the fact that I am no longer magnesium deficient or something else entirely– I just don’t know.

      Time is on your side. If you support your body and give yourself time you will be ok. Most people do regain at least most of their prior function over time. It helps to believe that you will recover. The mind is a powerful thing. Drop negative thoughts and keep hope alive to recover faster.
      Ruth

    • Michelle Polacinski August 15, 2016 at 10:58 am Reply

      Hey Alexandra (and Ruth!),

      First of all, Ruth, thank you so much for sharing your story. I’m looking into taking CoQ10 and PQQ to heal my nervous system and this is the first story I’ve read dealing with FQ affecting the mitochondria (what I’ve been doing research on). I’ve been taking 200mg of magnesium stearate daily and since getting my blood drawn yesterday, my magnesium is on the high side, so I’m going to take it every other day, looking into the oil. My main symptom is peripheral neuropathy (numbness in legs, arms, face, and sometimes whole body) that comes and goes along with fatigue. I have a pins and needles feeling in my head too, but that happened for the first time two weeks before the cipro, so we’re still ruling out neurological diseases. Anyway, thank you for all of your information. It’s thorough, much appreciated, and gives me a ton of hope for healing.

      Alexandra, I’m 23 and believe I have recently been floxed. It seems as though most floxies are in their 40s-60s and having this happen to me so young makes me feel very alone. Please reach out to me. I would love to discuss symptoms with you and have some sort of support in the young community. A few of my younger friends have suffered more minor side effects from cipro, but not to the extent that I’m experiencing.

      Thanks both of you and positive thoughts for healing! ❤

      • Ruth Young August 15, 2016 at 1:21 pm Reply

        Michelle,
        Blood testing for magnesium levels is useless since about one percent of your magenesium is circulating in your blood. I have read posts from doctors who actually believe in FQ toxicity who said that it is vitally important to get that blood level of magnesium up into the high normal range and keep it there for at least a year. So if it’s a bit high that does not mean you should stop or back off, just that the amount you are taking is exactly right but you have to keep it up like that for a good long while. Our bodies no longer have normal reserves of magnesium. It takes a very long time to restore lost intracellular magnesium. I do not use blood tests, I rely on symptoms. If my teeth are loose I need magnesium. If my legs are cramping and hurting after a short time standing I need more. If I get diarrhea I took too much.

        Magnesium stearate is absolutely terrible stuff. They actually sell that as a supplement? Usually it is used to lubricate the machines used to make pills. Dr. Mercola suggests avoiding supplements with even trace amounts of it. I try to do that, but it is hard. Take anything but that: malate, taurate, glycinate or threonate are all great forms of magnesium. Magnesium oxide is basically a laxative so I would avoid that one too.

        Some of what you call peripheral neuropathy may not be– all those symptoms can happen after GABA receptors are damaged. Sometimes we get weird sensations because there is nothing to stop the nerve impulses– without GABA (or the cells having good ability to respond to GABA) there is nothing to calm things down. The nerve works fine, but there is just too much input. The numbness can be a stress response. I had half my body go numb initially. I practically ran to the ER (actually I drove our truck) but they could not find anything. Eventually just the one side of my face would feel slightly numb at times and even that does not happen anymore, or if it does it takes a lot of stress and stimulation to cause it. Everything resolved because my nerves were fine, but my “rest and digest” nervous system was damaged. As that got back into balance with my “fight or flight” nervous system (actually they are both branches of the autonomic nervous system) I felt a lot better.

        Just keep calm and carry on, as they say. Do not panic! No matter what weird stuff happens to your body post flox it does not mean it cannot heal. Often it just reverses over time as GABA receptors upgrade and stress levels go down.

        The mito support can be a good thing, although you may not even need it. Not everyone has significant mito damage. Hard to know without expensive testing but supporting your mito is going to help healing in any case. But our bodies have an amazing capacity to heal, plus the younger we are the easier it is for that healing to take place.

        It can still take a long time, even for young people to recover from getting floxed. Do not lose hope, just hang in there.
        Ruth

        • Michelle Polacinski August 15, 2016 at 1:51 pm

          Thanks for your quick response, Ruth. I’m looking for alternate versions of magnesium supplements now. Haven’t been able to find magnesium oil though. I’ve also noticed that my numbness issues tend to increase with stress. I’ve been taking more baths and started coloring, different types of meditation. I’m looking into acupuncture and dry saunas as therapy. Omg I’ve been to the ER 6 times in the past two weeks. I lost 20 lbs in the past two weeks too. They’ve done every test imaginable and couldn’t find anything. It seems as though I’ve run out of options with western medicine. They even had me admitted into this awful hospital for two days, so much malpractice and disorganization (the staff kept confusing me with the person in the other bed because their information was off) that I couldn’t sleep the night I got out from terrible nightmares about this place. The next day I was so happy to be out that it was my best day yet. Thanks again for instilling hope for me. All of this, as you (and we all) know is really hard.

  4. Alexandra April 24, 2016 at 7:40 pm Reply

    Thank you so much for the quick response, Ruth. I can’t tell you how much it means to me knowing there are people out there who are listening and able to support me through this. As of now, I’m taking Magnesium Threonate and will look into the Idebenone. I haven’t heard of it, but I think it’s worth giving it a try. One last question for you — when it came to your brain fog, did it come and go in waves? Sometimes I feel like it’s finally receding, but the next day it increases in intensity and is very discouraging. My brain fog makes me unable to focus on “big picture things.” For example, I can have a conversation with someone, but I can’t take in huge crowds or process large spaces. Going to the grocery store is way too overwhelming for me these days! I’m determined to beat this thing and I’m doing everything in my power to stay healthy, but it can be very difficult.

    • Ruth Young April 25, 2016 at 4:13 am Reply

      Alexandra,
      Sounds like you may have had some damage to your GABA receptors. Gamma amino butyric acid (GABA) is the main inhibitory neurotransmitter in our nervous systems. It calms everything down. FQ’s can damage the receptors for this neurotransmitter. Benzodiazepines, if taken for too long or at high doses, cause similar damage. You can find out more about what symptoms to expect at websites for those recovering from protracted Benzo withdrawal. The good news is that there is no evidence that such damage is permanent. It heals, but it takes a long time and the healing process can be painful and uncomfortable. Symptoms cycle– this is why sometimes your cognition and ability to handle stimulation seems normal and other times you have difficulties.

      Avoid supplementing GABA. It is not very bio-available, you may not even be low on it (just receptors for it) and taking too much could slow your healing. Precursors to GABA are ok, just to ensure you do have enough through this stressful experience. CalmPRT has a couple precursors to GABA in it.

      Meditation, trying to relax whenever you can even if it is difficult, and taking deep, chest expanding breaths will help. Right now your sympathetic (fight or flight) portion of your autonomic nervous system is in overdrive. You want to keep working at shifting the balance back toward parasympathetic (rest and digest.) Your nervous system wants to get back in balance and it will eventually. My ability to tolerate stimulation is getting much better– I feel much more normal most of the time these days.

      Avoid stimulants for now as they will make you feel worse. Take time to relax in quiet environments but do not become a hermit. Get out now and then and do those things that feel overwhelming because you will heal better that way. Your nervous system adapts to the stresses placed upon it. Living as normally as you can helps to reset the system, as it were, so that it can tolerate the things you want to do. But taking time to reduce stress and stimulation is also critical. You will learn good coping skills through this experience that will help you deal better with stress for the rest of your life.
      Ruth

      • Alexandra April 27, 2016 at 7:44 pm Reply

        Thank you Ruth. I wish I could give you a hug right now. I’m going to look more into benzo withdrawals. I also have an upcoming appointment with a doctor who has dealt with cipro poisoned patients and chemotherapy patients in the past. I’m looking forward to hearing what he says and I’ll report back what I learn. A thousand thanks to you — I’m getting teary eyed just knowing people are out there that are kind enough to help me through this.

        Alexandra

        • Ruth Young April 28, 2016 at 4:58 am

          I will consider myself hugged then! If you are in FB you should be able to find me there. People from this site do so all the time. I’m in Wisconsin and my profile pic is currently my cat Monty. You can send me a friend request if you wish.

          You’ll be ok! It’s a long hard road but I feel like I have come out of it better than I was before. I pray that is your experience as well!
          Ruth

  5. Terri Arnell May 2, 2016 at 9:48 am Reply

    Hi Ruth- Thank you for sharing your story on this website, and giving me hope in the process. I read thru all the submitted stories, and found so much helpful information and wished I had found it earlier! But found yours especially helpful!! I was floxed about 5 years ago from two courses of flouraquinolones ( Levaquin and Cipro,) but no symptoms came out til 4.5 months from taking the last round. It took a while to figure out it was the meds. Long story short, it took about 5 months of terrible tendon pain coming and going over most of my body, and having balance issues (like being on a cruise ship for 5 months)..I have overcome most of it, except a month ago I came down with an awful flu with fever, and shortly after all my symptoms have been come back!! Not as strong or as painful, but they are there and I’m still struggling now.

    Anyway the reason I’m writing you is in regards to the PXP purple rice you have been taking… Wondering if you are still taking it and if you are still seeing benefits? I ordered some and have been taking it (1/2 tsp-1 tsp) 2x/day for the last 4 days. I have become constipated lately and think it might be the rice. (Sorry…TMI !) Did you have any adverse reactions to taking it? I have read all the testimonials and it sounds like it would be so helpful for people floxed. I just wanted to get any info you might be willing to share.

    Thanks again for your hope and encouragement with this awful problem! ( And that no doctor wants to admit can happened to their beloved flouraquinolones.)

    Terri

    • Ruth Young May 4, 2016 at 3:39 am Reply

      Terri,
      I have not had any constipation from the rice. I seem to have the opposite issue these days. Either can be the result of a damaged autonomic nervous system. Floxies get stuck in fight or flight mode because the rest and digest portion of our nervous system is damaged. If you were about to be eaten by a bear your body would give little thought to managing food passing through your GI tract. It either passes through way too fast or just stops. My guess is wait awhile and you’ll have the opposite problem. I’d be very surprised if it was the rice because although some people, even non-floxies, get symptoms of a rapid detox from it, nobody complains of constipation, at least not that I have seen.

      I started something new called frequency specific microcurrent. You can google it to learn more and find practitioners in your area. It seems to improve my balance so you might want to look into it.

      Good luck and happy healing!
      Ruth

      • Terri May 4, 2016 at 12:02 pm Reply

        Thanks Ruth for taking the time to answer…I really appreciate it! I found a few practitioners in my area that use the frequency micro current, and will check it out. One last question on the rice…are you still using it, and if so do you really see improvement in your symptoms? It’s quite pricey and I have my husband taking it too for lowering his cholesterol.
        Thanks for all your help!
        Terri

        • Ruth Young May 4, 2016 at 2:22 pm

          Every time I stop or cut back on the purple rice my blood pressure goes up. Not to the scary high numbers post flox, but back into the mild hypertension I had preflox. It’ll be just above 140/90 or around there, sometimes with only one number being too high and the other ok. If I take the purple rice AND get my heart rate up for a few minutes while exercising about every other day AND stay away from the sugar I can keep my BP around 120/80 or a bit lower. It takes all three. Exercise and eating right don’t do it alone for me. So even though it is expensive I guess I am kind of stuck with it. It’s that or one of Big Pharma’s poisons, so no thank you.

          You’d have to try going off it and see if things that reversed while on it worsen. That’s how I would decide.

          It’s weird because I can drop other supplements and not notice anything but with the purple rice the blood pressure thing is a pretty objective measure that it is doing something.

  6. Sarah Bannon May 8, 2016 at 7:27 am Reply

    Hi Ruth, your story and replies to other peoples comments have been so helpful to me. I took cipro the week before last (four pills in total), but stopped the course when my achilles became incredibly tight, swollen and sore. I could walk on it, but it became even more painful and I started limping on the following Tuesday. I’ve tried to stay off it as much as I can this week, which seems to have helped a lot and I’ve also been taking magnesium glycinate 4 times a day, along with using magnesium oil, epsom salts, iron, zinc, coq10, vitamin e, and glutamine. I also have some mitoq, PPQ, idebenone and some Great Lakes gelatin ordered, so I’m hoping all of these things are going to help improve the pain and rebuild my damaged tendon asap, although from what I’ve read so far, it seem like time and rest is one of the best healers for this.

    As of today, my tendon is feeling much better, less swollen and tight and I seem to be walking on it much better than I have been for the past few days. I was just wondering what your view on exercise is. Should I try to walk normally on it when it’s not too painful or should I try to rest it as much as possible? Should I lightly strap it? I have a bandage ordered which has padding and support for the achilles tendon, but I don’t know if it’s better to support it or not.

    Also, long term, should I slowly build up walking further and further each day, and then I was think of something like pilates at some point, but I don’t know when it will be ‘safe’ for me to do this sort of stretching. Should I wait 4 months, 6 months? I know it’s very early into my injury, but I’m so concerned about the long term effects on my health that taking cipro has caused me. I was taking ballet class twice a week, it’s my hobby and my passion, but now I don’t know if I’ll ever be able to go back to this as ballet is really tough on tendons. Even if I don’t go for a year, I’m not sure I’ll ever be able to trust my achilles again.

    I’m sorry for posting such a long comment, and I consider myself very lucky that, so far, it’s only been my achilles that have been affected by this drug. So many other people whose story I’ve read on this site have had much, much worse experiences than me. I think your story is so helpful though, it’s given me hope that it’s possible to recover from being poisoned by cipro, although I think it will take many months or even years for this to happen for me.

    • Ruth Young May 21, 2016 at 7:00 am Reply

      Shannon,
      Sorry it took me so long to reply. I have been swamped with stuff for at school. I agreed to accompany the school choir for their concert and I don’t know what it is about “I’m an organist not a pianist” people cannot understand, but I have been practicing piano every spare minute for months and the director was still a little annoyed with me because it wasn’t good enough. No, just because I can play Bach on the organ does not mean I can play show tunes on the piano! Surprisingly my floxed brain and body held up pretty well with all that intense practicing so that is encouraging. But that is why I did not get back to you sooner.

      As a former PTA my gut feeling is against strapping the tendon to support it. That will only make it weaker. It fixes nothing in the long run. The problem with FQ tendonosis (and it is tendonosis not tendonitis) is that it is caused by oxidative stress damaging cells that then for some reason replicate themselves while at the same time the healthy cells slow down in their ability to replicate. Eventually, there are just too many weakened cells. This causes a spontaneous rupture. If it is going to happen exercising or not exercising, even taping it, strapping it, supporting it, resting it– not going to make a difference. Enough cells get damaged without healthy ones to take their place and the tendon just disintegrates.

      You prevent that from the inside out, not from anything you do externally to the tendon. Taking antioxidants helps, getting magnesium and vitamin C into you helps. Give your body what it needs to get the oxidative stress under control, support your mitochondria, and give your body the building blocks it needs to repair the tendon. You are doing all those things. We still don’t know what your outcome will be.

      However, the longer you go without a rupture the less likely, statistically speaking, it is to happen. Most spontaneous ruptures do actually happen while the person is still taking the drug. Then quite a few happen in the weeks following. It still can happen after months, but every month that passes it is less and less likely to happen. So time is on your side.

      I would say exercise gently, then rest and repeat. If you protect it from all stress it won’t heal. Just don’t overstress it. The eccentric contractions they usually prescribe for tendonitis would do more harm than good for you right now. Eventually, you can do those, but in like a year or two probably. For now, very gentle stuff. At first I avoided walking up inclines, I avoided jumping, avoided running. I saw an orthopedic specialist and he gave me a list of what to avoid in the short term.

      How did I know when I could start pushing it? No exact science there. I had to risk it and see what happened. It would get a little sore, I’d rest it, then walk up that hill again the next day. Eventually I was running up hills. And jumping. Just doing normal things.

      It will still get a little sore sometimes if I do something out of the ordinary, like climbing around on boulders at Devil’s Lake. But then I rest it and it’s fine so I figure I caused more healing! Dr. Whitcomb said to just keep up that pattern– push a little, then rest. But that was after like a year out. Initially, he said to take it easy but to know that statistically speaking at least, I was in the clear as far as a spontaneous rupture was concerned.

      I’d suggest a home ultrasound machine if you really want to stimulate healing. I know it helped me. If you want to go that route I can give you more info.

      I don’t know if ballet will be possible for you again, but I think you don’t necessarily have to rule it out. For now you do. But maybe not forever.

      Good luck!
      Ruth

  7. Sachi May 16, 2016 at 3:32 pm Reply

    Hi there Ruth, Thank you for sharing your story and writing so much detailed information. I talked with my NP about MitoQ and mentioned that you’d written about the CYP450 pathway. She was wondering if I might be able to find any reference articles on this, and perhaps if you might still have a link to where you read this information? She’s curious, and interested in learning more. Me, too. Hope that you are well and enjoying life.
    Sending my best, Sachi

    • Ruth Young May 21, 2016 at 6:41 am Reply

      I’m kind of busy with end of the school year stuff like report cards and practicing piano so I can accompany concerts. I think another floxie had sent me the reference on MitoQ, but I think if you put MitoQ and CYP450 into a search engine that particular study should come up. It’s not really unusual that depletion of that enzyme would interfere with a medication. It is needed to break down a lot of medicines, and MitoQ being a supplement doesn’t mean that it isn’t also a drug. It is a synthetic, after all. You often hear the warning not to drink grapefruit juice while being on a medication and that is because grapefruits (and to a lesser extent lemons and certain types of oranges) contain a compound that can block the CYP450 enzyme. So if you take MitoQ just treat it as you would one of those medications and avoid those fruits.

  8. Sachi May 21, 2016 at 7:44 am Reply

    Thank you!

  9. Mark Ruff May 23, 2016 at 8:44 am Reply

    Thank you so much for posting your story, Ruth, I am a 46-year old male, an academic frequently on the road as well as a professional pianist and organist who regularly plays for three church services a week. I took one 500 MG pill of Levaquin just before a transatlantic trip on March 13, 2016. It was the usual story: recurring sinus infections, a visit to an Urgent Care clinic because it was a Sunday afternoon and my normal clinic was closed and a 10-day prescription for Levaquin and Prednisone, the latter which I didn’t take. Just after taking the pill, I read the side effects that listed tendon damage and panicked since I had just been in Physical Therapy for a preexisting Achilles tendinopathy and a rotator cuff injury. I immediately discontinued the Levaquin but on the flight over to Europe, I arrived with tendinitis in the hips and glutes, I have now been diagnosed with tendinitis in the thumbs, hands and right biceps, all of which makes playing complicated Bach organ fugues more challenging. My joints pop more than before.

    I have found that continued PT, dry needling and deep-tissue massage has helped alleviate pain – but I now notice that any moderate activity seems to aggravate the tendinitis. My PT noted that I have “hyperflexible joints” (double-jointed thumbs, for instance), and that this might explain why I’m noticing more tendinitis symptoms. I still walk easily, although a three mile walk is likely to lead to some pain in my TFL tendons.

    But what I’m trying to figure out is this. The last ten months have been particularly stressful in my life (three deaths, one in the immediate family, stress at work, etc.). How much of my symptoms are a response to significant stress, how much are a classic nocebo effect (I find that just thinking about Levaquin can induce muscle spasms) and how much is actual fluoroquinolone toxicity? I’ve had none of the other symptoms classically described (neuropathy, ringing in the ears, brain fog).

    So glad to hear of your recovery and thanks for any insights here.

    Mark

    • Ruth Young August 15, 2016 at 1:46 pm Reply

      Mark,
      I just noticed your comment and realized I had not responded. I hope you are doing better now than when you posted this. I hate to hear of symptoms interfering with your ability to make music!

      I do know that most, though not all, Floxies seem to recover in an 18-36 month time frame. There are a lot of negative stories on the Internet, but if a person does not heal they are much more likely to post about it, I think. Floxiehope is unique!

      My neighbor got floxed two months after I did. She made a 100% recovery. We had similar issues, but I was slightly worse than her. Until she talked to me she had no idea what had happened to her.

      The music director for the parochial school/church where I worked two years ago got floxed, made an almost 100% recovery. She had some issues with her knee, having had a complete rupture of a tendon there and she is not young. But everything else resolved.

      One of the pharmacy techs where I got the Cipro is a Floxie. She was very kind to me when I came there after my reaction. She was not there the day I picked up my prescription or maybe she would have warned me. She is 100% recovered.

      My mother also knows someone who made a 100% recovery after a very bad reaction to a quinolone.

      None of those people posted anything online about healing from being Floxed. If I know (or know of) that many people who recovered quietly then how many are out there? The odds are in your favor. They just don’t seem like it from what you read online. Even the support groups can be harmful to our psyche because no one there posts about healing or if they do it is one quick post whereas they posted a lot during the time they were unwell.

      I can’t know exactly what happened to your tendons and joints. I had some pretty severe issues, especially with my right ankle and left Achilles’ tendon, but tightness and popping and pain and stiffness popped up all over the place through the entire ordeal. I’m better now, so whatever was going on stopped. I think it was a combination of functional mineral deficiencies, increased oxidative stress and damaged GABA receptors for me. It is possible to reverse those things but it does not happen overnight.

      Dr Jay Cohen’s last book was about FQ Toxicity. He rushed to get it finished before he died– I know he wanted to do more with it– but the final product is still very good. I would recommend it as a place to find out more about what happened to your body and what can be done about it.
      Ruth

      • Mark Ruff September 20, 2016 at 11:09 am Reply

        Hi Ruth,

        I just noticed your response. I have noticed that things worsen and improve in cycles. I am now in the midst of my third major cycle. The first downward cycle took place immediately after taking the medicine; the second in early May, and the third approximately two weeks ago. Each cycle is accompanied by significant tendinitis and a spread to new areas: I now have significant jaw pain in addition to plantar fasciiitis. The thumb pain has worsened, and my PT constantly notes the thickening of the tendons there, a sign that things are worsening at the moment.

        I suspect that it will probably take at least a year to recover. In the meantime, I’ve been having biweekly PT sessions, which have kept my tendons from rupturing.

        Thanks,

        Mark

        • Debbie Snyder September 21, 2016 at 10:15 am

          Hi Mark (Ruff),

          I’m 7 mos. out from my floxing and am still suffering from the plantar fasciitis. It seems to wax and wane. Had not heard of many people suffering with it so was glad to see your comment. I was always pretty sure it was from the Levadquin. Have you any idea as to how long it takes to heal?

          Thanks.

          “Until one has loved an animal, a part of one’s soul remains unawakened”.   Anatole France

  10. Eddie June 13, 2016 at 8:37 pm Reply

    Hi Ruth
    Its been almost 9 months since i got floxed and i have improved considerably feeling normal for routine activities on most days.

    how long does one have to take antioxidants?

    i wanted to take ozone therapy (which is a pro-oxidant therapy and releases oxygen radicals in the blood stream) for some kidney issues, but have been scared that it may cause symptoms to relapse.
    Do the quinolones remain bound in our ligaments and tendons forever?

    • Ruth Young June 14, 2016 at 7:22 am Reply

      Dr. Whitcomb told me that the published half life of the quinolones is accurate. It may take a little longer to clear the body if someone is obese, but they don’t hang out in our tissues. Within a few days they are absolutely gone entirely from your body. That was his opinion. Of course, if a bus hit you, it is gone too but you are still in trouble.

      Both damage to mitochondria and to GABA receptors cycles when it heals and I think that gives rise to the myth that quinolones stay in the body. But a physician I trust very much does not believe this, so I think it is a myth.

      I don’t think ozone would hurt you at all as many floxies use that therapy with great results. I am glad you are feeling better!

      I will warn you that sometimes when you do something that really supports healing it can cause your body to upgrade more GABA receptors and when that happens you feel it. The ozone could give you a brief relapse of symptoms caused by damage to GABA receptors. I have had that when starting a new type of therapy or adding healthier foods to my diet or a new supplement. But it was short lived and after the brief flare I felt even better and more normal than before.

      Since this heals through cycling a down turn does not necessarily mean new damage it actually means new healing. Modern medicine does not subscribe to this model– it says if you have symptoms we must eliminate them. But in reality, not every moment of discomfort is to be feared and sometimes when the body heals or gets rid of toxins we don’t feel so great. Our body is busy working hard to get us better and we feel that.

      So personally, I would do the ozone therapy, but he prepared for a possible brief downturn in symptoms common to those in Benzo withdrawal (since they also have damage to GABA receptors we can assume if we have similar symptoms the cause may be the same.) But not all floxies have damage to GABA receptors so this might not even be an issue for you. You still could end up feeling more tired. Give your body what it needs to heal and it will do that, but sometimes healing is hard work for our bodies and we can feel that. Later, hopefully, you will feel the positive results. I never did ozone treatments so I would just say look into all the risks vs possible rewards and I hope it goes well for you, whatever you decide!

      • Jason June 16, 2016 at 5:55 pm Reply

        “Both damage to mitochondria and to GABA receptors cycles when it heals and I think that gives rise to the myth that quinolones stay in the body.”

        Ruth there are no studies or evidence of this to be found anywhere (just a “theory”, and one only you have), where as there are mountains of studies and evidence on how toxins store in the body and can be later mobilized, especially known to happen with Exercise, and which is EXACTLY what happens to Floxie after Floxie after Floxie. This is also why you see every single Naturopath and Functional Medical Doctor (the ones who are actually worth going too for most things since they are trained in finding root causes not symptom suppression) trained in detoxification, it is a very important part of the body “Regular Doctors” are trained to almost fully ignore, they are also trained that Drugs cause no harm and many other fallacies…

        Anytime someone has a flare up, PN is getting worse, joints are falling apart, muscles and tendons are like mush like someone punched or kicked them, etc of course that is damage, joints don’t fall apart because they are healing…LOL. When something in the body is “healing”, new damages are not done, ONLY in the case of something like “healing through detox” would that be true (or generally other outside “interventions”), and some/much of that damage can often be prevented. What you said about “healing being hard work” for the body IS accurate in many cases however, and it can use a LOT of energy and people need lots of extra rest, nutrition etc to help the process, but damages and a full relapse sometimes with all new symptoms, worsening of symptoms etc this is incorrect and not part of healing.

        Like you, after every flare-up (mine [about 12-14 total which worked every time] were done on PURPOSE because I wanted the toxins cycled and out ASAP and knew how to do it and protect myself etc) I was getting a little better, and for me each flare-up was less intense and lasted less time, because there were less and less toxins cycling and left over so yes I too was getting better and closer to being healed each time. I was 85% healed from 27 symptoms at 10 weeks, and 95% at 5 months, all through aggressive systematic controlled detox. The body detoxes every minute of every day, it happens in some people much better than in others, and some toxins are easier to get rid of than others, so someone can just “wait” and eventually heal most times with this poison, or they can do many things to promote healing too which can speed it up. There is much more to all this and a large wrinkle in it but you get the idea.

        If anyone would like to learn about some of the MANY things that can cause the Flare-ups/Down-Cycles/Relapses there is an old detailed post about it here https://floxiehope.com/2015/10/12/im-floxed-now-what/ about half way down the page on December 29, 2015 at 7:26 pm. These are based on Science, Naturopathic and Functional Medicine teachings, my 10 years of studies on the Human Body in all this, my very detailed and thorough studies of Fluoroquinolones and hundreds and hundreds of past Floxies, and my own “experiments” and experiences many of which were fully repeatable.

        • Jason June 16, 2016 at 6:15 pm

          “damages and a full relapse sometimes with all new symptoms, worsening of symptoms etc this is incorrect and not part of healing.”

          Just to clarify in case this one point is taken wrong, it IS part of the “healing process”, in this specific case, but damages are not from something healing like Gaba receptors, which in that theory would then cause Nerves and the Mylein Shealth to be further damaged, Joints being re-damaged, hormonal and neural transmitter imbalances, weakening of Adrenal Functions, GI disturbances, completely new symptoms to appear etc, those things happen from oxidative stress, which is one way toxins damage the body.

        • nicole reedy June 17, 2016 at 11:08 am

          Jason, I just read your post on Ruth’s page. I also went back & read all your posts from December. I do not remember your story or see a recovery story. I would love to hear it & if I missed it somewhere, sorry.
          I must say people like Ruth, Daniel L & a few others on here have done a lot to give us hope & you have just managed to make me want to jump off the nearest bridge!!!! Maybe I do not understand you, but if you could maybe tell your story of healing in a bit more positive way I could?!
          I have been working with a great naturopath for months doing the mag, glut. IV’s etc. & know I can fall back a day or two when I do them but have now had a unbelievable relapse with all new symptoms so I guess I am a bit more touchy at the moment. I have not done anything different other than pool therapy in a ozone treated pool once with a little ultrasound treatment to my feet. If this is all it takes to get a relapse then why go on living?!
          I have tried to be of help to others here & believe even the belief of a healing can make you well. You just robbed me of that for the moment!
          I had a girlfriend that made me afraid of everything I ate or got near so I had to get her out my life because I could not stand living in her’s but now I have to because of these drugs! And that was someone I had known for 36 years!
          If you have some great healing information I would be happy to read it but SHAME on you for kicking me while I am so down!!!!!

        • Jason June 17, 2016 at 11:36 am

          I am Sorry Nicole that your interpretation of information is leading you to such anxiety and despair, there is absolutely NO reason to come to those kind of conclusions at all, just none what-so-ever. I think you should go back and re-read the info carefully, and for even more info follow some of the links to more info in the “I’m Floxed What Now” link, there is a TON of info spread all over this website that I have posted (for example I have posted about 70 comments in the Anxiety article you may want to spend some time on), and the common message resonates VERY CLEAR – LOTS OF HOPE and things people can do to heal.

          I have always maintained there is lots of hope in all my messages over the last 1.5 years of posting here, that has never changed, I mean I healed to 85% in 10 weeks if that does not give hope and show what can be done with knowledge then not much else can. Even after I was healed to 95% I was still here in the main pages for 6 extra months helping people with info because I cared and wanted to share as much info as I could to help, eventually I ran out of time and felt that most of the important info people needed to heal was shared.

          Information is power, but ONLY when the information is accurate, and that is tougher with FQ Tox because not enough things have been “proven” with it.

          Don’t Despair, research, then research some more, there is a LOT people can do once they know how to address the FQ Tox as a “whole”, and then also account for their own body strengths/weaknesses and their own specific symptoms

          Good luck

        • Nicole Reedy June 17, 2016 at 1:31 pm

          Thank you Jason and as I said I am a bit touchy right now!

          I have managed pretty well with all the tendon problems and would have said that I was turning a major corner and the this new I guess neuropathy symptom of burning & itching to death as if I have had hot water poured all over me has me quite stressed. Or maybe I am a bit nuts from it. Usually ask questions without lashing out.
          So I apologize.

          I reread your posts and probably did not let it all sink in as my mind is a bit rattled today. I guess at the moment a sign from God would mean more to me as I have just researched too much information & the truth is if there was a clear cut healing answer we would all be doing it! I took offense that you would lash out at Ruth that her theory was just her theory. The thing is all of this is just made up of theories are all of us would be well & not constantly on the internet.

          If there is a post somewhere with a simple explanation for a simple minded me of your detox program I am interested in reading it. You seem to have had a very quick recovery. I do not know what your symptoms were but would like to understand what you did to bring on a quick detox and safely.

          There were days when straight forward information would have been interesting to me & not have bothered me in anyway. I guess just not today.

          I have let a doctor put a lot of stress on me the last few weeks. Maybe just the stress response can even cause a major setback. Even if you feel you are handling it we sometimes aren’t as most of us are pretty angry with doctors at the moment!

          Nicole

        • Jason June 17, 2016 at 4:17 pm

          No worries at all Nicole it is completely understandable, suffering tends to make us on edge and I am sorry to hear about your setback and new Neuropathy 😦 I know it might look like I am lashing out at Ruth but believe me this is far from the truth, Ruth is “one of the good guys” here who spends hours and hours trying to help people and I have said it before she is an ANGEL for doing so, it takes a LOT of time to put together these types of long posts, some appreciate this aspect some do not seem too, I am glad you do 🙂

          FQ tox is unfortunately difficult to research because one does not really know where to turn and who to trust etc, and there are many confused people out there just trying to make sense of things, some appear confused some appear to know what they are talking about, some are even trying to mislead people on purpose, there are no easy answers for ANY health issues on the Internet! One of the other problems with FQ Tox is there is not really one clear cut solution which will work for everyone which makes things unfortunately more complicated in an already VERY complicated scenario in the extremely complicated Human Body. I apologize for this, it is completely unfair that first we are put into this position and then second left on our own to try and figure things out, I had a LOT of Anger for a long time, really I am still angry not only for what happened to me but for what happens to everyone, those responsible should pay with their lives.

          Unfortunately detox is not so simple either and is really something most people will need either a Toxicologist (I have a couple people who went to them and had success) or just a knowledgeable Alternative Doctor to guide them along the way, it is often not a smooth path to heal and someone who has experience and understands the ups, downs, and possible complications in this can really help probably your Naturopath could be such a person and a Myer’s Cocktail can help for sure. Unfortunately many people have had bad reactions to Glutathione which can include new Neuropathy (someone new came to me just 4 weeks ago again with this reaction), my recommendation would be to not have more of that.

          Stress is another thing that can bring on a Relapse (not sure if you noticed that one in the list I posted), one of the ways this can happen is because Stress depletes Magnesium and Floxies are already having troubles with keeping Mag in the Cells. Almost all regular GP Doctors will not only be unhelpful but actually quite harmful when it comes to Floxing, I guess you have discovered this, their training is the problem, I unfortunately seen MANY many people get FURTHER harmed by their regular Doctors, it really is best to avoid them for Floxing things, and stick to going to them for bleeding to death, broken bones and organ failure type scenarios, those are their true expertise, when it comes to so-called-diseases, every day common ailments and their symptoms etc they really are more detrimental then helpful.

          It sounds like you healed a lot before your setback so I’m sure you will again try not to worry (easy to say I know, I was there too) 🙂

        • Jason June 18, 2016 at 12:45 pm

          One more small note here on toxins. Right from the start I was pretty sure Cipro with Fluorine in it was a small time bomb that would actually set off “other time bombs” inside in the Body. Toxins are stored in most of the same places, and Fluorine is one of the most reactive elements on Earth, and contrary to what some believe the Fluoro-Carbon bond likely does get broken down in the Liver.

          Anyway as time went on it was VERY obvious that indeed the Cipro toxins were interacting with other toxins in the body, even mobilizing some VERY unwanted things from their storage places (this is WHY you see people with ALL NEW symptoms in a relapse for example, brand new toxins can be formed when 2 combine) and 2 experts I have conversed with also confirmed this is happening, its unfortunate but very true and how these things work

        • Ryan L June 20, 2016 at 3:32 pm

          Jason,

          It’s nice to see you posting again in Floxie hope. I have enjoyed reading many of your comments in the past and have actually printed out the information you listed on cycles, relapses, refloxing to have in my tool kit. Anyway, I wanted to echo Nicole’s comment about being interested in reading your recovery story. It sounds like you may be completely healed (or close to it) by what you described in your post above, and although everyone’s journey is different, I think many would be interested in reading your story since you are a wealth of information. Take care,

          Ryan

      • Jason June 20, 2016 at 7:59 pm Reply

        Hi Ryan thanks for the message, glad to hear you are finding some of the old posts useful, there is a lot of research behind them for sure.

        Well I have not forgot about anyone here at FH, quite the contrary, I still worry about many of the people here and wish I had more time for everyone, this is one of the reasons I felt I had to post about this “Toxin Myth” subject as it was being laid out because it is a VERY important one. I have also made a few very very important “recent” discoveries about FQ tox, and I’m still pondering how I will share this info but certainly will once I decide how.

        As far as my story, sadly I never wrote up a full version. There is just SO much important info about what is going on with Fq Tox and how to heal from it etc that when I started putting it all together it grew into an untamable monstrosity (I went all the way back to my original posts in Feb 2015 in main pages and was amalgamating them and condensing them, there were so many….). I was still trying though until I really ran out of time and then realized I could not post here anymore and of course having a story up would mean people coming to look to help and there would be no way I could not respond, so I had to shelf the whole thing 😦

        I did however write up a very very abbreviated version, you can see that as the very last 2 posts on this page: https://floxiehope.com/comment-page-44/#comments

        I am still debating on putting up my own website and continuing to do consults, I have not purposely taken on anyone new for quite some time but I am hoping I will be able to again. I will definitely be corresponding with Lisa on this as the people that come here are in pretty desperate need of some symptom specific guidance (to say the very least…) to ease the process as much as possible. I also have a lot of experience and knowledge in many many other health areas/ailments etc as well but I do have a soft spot for Floxies and I do consider it one of my specialties.

        Good healing to you Ryan

        • Tricia June 20, 2016 at 8:27 pm

          Welcome back Jason!!!
          I’m about a year and a,half out. Experienced some horrific down cycles, and like you mentioned previously “new symotoms ” of PN from January til May. I don’t know how I survived. ….but I’m back to almost normal now 🙂 enjoying life again finally w little symptoms these days. I pray this continues:)
          Thanks for all your help and info to the flox community here!

        • Jason June 21, 2016 at 7:55 am

          Hi Tricia. That is GREAT news! So Happy for you, I knew you would heal again 🙂

          PN was one of the things I was a little stumped on for some time as it is often a really really stubborn symptom for many people but I have since learned the best possible ways to help people get through it, I even had my own very very low grade PN turn into full-fledged Pins and Needles at one point and I was able to quite literally shut it off 2 days later (scared the bejesus out of me though).

          I’ll be watching for your story to show up here… 🙂 Take care!

  11. Vee June 21, 2016 at 8:32 am Reply

    I am a floxie 5 years on and also allergic to PCN but currently have a UTI. All natural ways to clear it have failed, including baking soda and d mannose and cran max.. I am afraid to take any abx but fear a kidney infection. Help needed.

    • Lisa June 21, 2016 at 10:38 am Reply

      Hi Vee,

      There is an herbal antibiotic called andrographis that may help. Colloidal silver may be helpful too. If those fail, macrobid/nitrofurantoin is an alternate antibiotic. It’s not without consequence, but it’s safer than FQs.

      Regards,
      Lisa

      • Vee June 21, 2016 at 11:36 am Reply

        Thanks, I will look into those. How much silver, if you know?how long is macrobid treatment?

      • Jason June 22, 2016 at 6:56 am Reply

        Speaking of Angels, how is Floxie Angel/Hero number 1 doing? Good I hope

    • Sarah June 22, 2016 at 1:10 am Reply

      I suffer from a chronic bacterial bladder infection which antibiotics can’t clear. When it flares up badly I use oregano oil tablets (I use the ATP brand recommended by a nutritionist, they’re pricey, but work very quickly). They’re the only thing I’ve found that calm my symptoms, although bicarb can help with the burning sensation, it obviously won’t do anything about the actual bacteria. BTW d-mannose should only be used as a preventative measure, it will actually worsen symptoms if you’re in the midst of an infection/flare. Hope this helps.

      • Tricia June 22, 2016 at 10:32 am Reply

        Hey Sara
        I’m very prone to uti’s….its how I got floxed in first place 😦
        Ur right abt d-mannose, it was completely worthless for me once my infection set in. I’m glad you found oregano tablets that worked for you. Where do you get the ATP tablets?? I used oregano oil drops for uti but I don’t think they helped much at all.

        • Sarah June 22, 2016 at 11:23 am

          Hi Tricia,

          I normally buy them from amazon, I’m in the UK, so if you’re elsewhere I’m not sure where you’ll get them. Maybe just do a search for ‘ATP Oregano Biotics’, normal oregano oil never worked for me either, so I’m not sure why these work so well, I think maybe because they’re enteric so are supposed to make it through the stomach unaffected. Surprisingly, I was given Cipro five years ago when I had my first UTI, and didn’t react to it at all, shame I didn’t seem to escape the horrible side effects this time round 😦 BTW, if you get recurring UTIs or seem to have one continually (like me) and you’re in the UK, I can recommend a clinic where they test urine properly (not like the NHS, they don’t grow the cultures for a long enough time, which is why I kept getting negative test results even though I was still having UTI symptoms). When I sent my sample to this clinic they found lots of nasty bacteria living in my bladder, and also recommended oregano. They can’t prescribe an antibiotic unless I send a sample while I’m having a full-on flare and that hasn’t happened for a while thankfully. Not sure about taking any antibiotics after what cipro has done to me anyway to be honest!

          Hope this is helpful. Oh, one last thing, cranberry juice or tablets should only be used as a preventative too, as it just makes things worse, I didn’t know this and took it for five days when I had my first UTI (ouch!!!)

  12. tarkonis June 21, 2016 at 8:37 am Reply

    Hi Jason, what were you methods for clearing the PN, I am suffering from full body burning following 2x oral avelox, ten months out. Please any suggestions welcome.

    • F June 21, 2016 at 1:54 pm Reply

      Yes Jason how did you deal with your PN symptoms?

    • Tricia June 22, 2016 at 6:34 am Reply

      Hi Dave, and F
      For now my PN has almost completely vanished, w little flares now and then. I also had arm and leg weakness and feelings of paralysis…along with burning, stinging in extremities:(
      I know Jason will have great advice for sure,
      but I was helped greatly by high doses of R-ala and acetyl-L-carnitine. …along w fish oils.
      I’m still not 100% and prbly won’t ever be…but I am much better and very happy w where I’m at now:)
      I hope this helps for you!

      Take care,
      Tricia

  13. Jason June 21, 2016 at 8:08 pm Reply

    Hi Dave & F sorry to hear you are still suffering. As with most things like this we can’t just take a few different pills and expect things to get better the whole picture has to be considered especially when someone has had a prolonged problem that is not clearing detailed trouble-shooting is needed and will take some time (There are many considerations for PN specifically too not unlike many other symptoms). I have just inadvertently taken on someone new again today, however I can probably take 1 or 2 more cases so if you would like me to take a detailed look at what is going on for you ask Lisa for my email, then really I think I will have to disappear again after this for awhile! (trying to focus on looking for a new job, tough going right now).

  14. F June 21, 2016 at 11:08 pm Reply

    Thank you Jason!

  15. tarkonis June 22, 2016 at 7:15 am Reply

    Hi Jason, my email is tarkonis_2000@hotmail.com I would very much appreciate any advice at this point, getting quite desperate. 😦

  16. Tricia June 22, 2016 at 1:57 pm Reply

    Hi Sara
    Thanks for your reply! 🙂
    I’m in the United States, so I’ll look into Amazon. I have had a similar situation, where cultures kept showing up negative but I felt like a uti was still present. ..it all felt very inflamed. Luckily this settled down and I have this only occasionally, almost similar to what would be intersitial cystitis.
    One other thing that had saved me from uti’s was a Chinese herb called “pyrossia 14″…I’d take it as soon as I felt a uti coming on. My last uti I waited too long to take the herb, and it didn’t work:(
    It seems with uti you have to act on them very quickly. ….otherwise it’s too late.
    Thanks so much….I wish I would’ve known about these things prior to taking FQ’s:(

  17. Tricia June 24, 2016 at 6:57 pm Reply

    Hi Sara (again)
    Just a quick question abt the oil of oregano tablets. I googled it and it showed up as “ADP Biotics” ?? I’m guessing thats the right one..it’s international so an extra $20+ for shipping which is fine, as long as its guaranteed to work:)
    I noticed it said it’s useful for intenstinal infections as well as upper respiratory, but said little about uti.
    I really hope this works as I’ve been greatly disappointed w d-mannose & cranberry juice and tablets. 😦 something has to help!

    • Sarah June 25, 2016 at 8:27 am Reply

      Hi Tricia,

      Yes, the ADP Biotics are the brand I use. I’m sorry I can’t guarantee they’ll work for you, but I guess it’s worth you trying them once, at least you can rule them out if they have no effect. I was initially advised to buy them to treat SIBO (which is a small intestine infection), buy a nutritionist, then when I sent my urine sample to the clinic, they also advised me to use this brand.

      Do you avoid trigger foods when you feel an infection coming on? I find acidic food and drink such as wine, vinegar, ketchup, artificial sweetener (this has a terrible reputation for causing bladder problems), and even tea would irritate my bladder. I basically spent a year cutting a lot of trigger foods out and am now at the point where a small glass of wine is fine. I still have trouble with ketchup though and vinegar is an absolute no-no.

      I really hope they work for you, I know how miserable UTIs/IC can make life 😦

  18. Tricia June 25, 2016 at 6:48 am Reply

    Hey Jason
    I know ur busy but if you could please email me @ triciahelt44@gmail.com that would be great thanks!!!

  19. Jason June 30, 2016 at 9:00 am Reply

    Just another case and point. This is the 2nd or maybe the 3rd time I have been “Refloxed” by Antibiotics in Beef (Ruth I know you don’t think they are in there, it is VERY widely acknowledged by everyone that they are do some poking around and you will see for yourself you won’t have to look far info is everywhere). This is extremely minor for me and pretty much gone now after just a week but the ones in the past were much bigger flare-ups and for anyone already suffering this is the last thing you need.

    This as I have said before is a “re-poisoning” in this particular instance, since new toxins have been introduced. This has absolutely NOTHING to do with Gaba receptors upgrading etc, this is something that has happened to people over and over and over again, including Tricia right above me (who got a brand new symptom PN from Pork), people are completely fine, eat the toxic meat, and have a “relapse” (which is really a re-poisoning in this case). Note though that the Gaba receptors CAN be affected or re-affected once again though, but this happening was due to the meat and nothing to do with the receptors as I have outlined above.

    Other reasons again this kind of thing can happen https://floxiehope.com/2015/10/12/im-floxed-now-what/ about half way down the page on December 29, 2015 at 7:26 pm.

    Be careful what you eat folks!

  20. Jason June 30, 2016 at 10:12 pm Reply

    Here is another case and point – Fluorides. Ruth I know once again you don’t believe this is an issue, and think people are flaring from “Gaba receptor” upgrades. Take a look at the current page Folks, poor Lee has been refloxed MULTIPLE times from Fluoride at Dentist since 1990!

    See anyone that has done ACTUAL research, already knew this was a BIG PROBLEM. I have seen person after person go through the same crap, including Catherine on the very last page who is still bedridden, this is why I wrote the post linked above, this is not some “theory”, it is once again based on SCIENCE and person after person after person going through the same thing. This is NOT some Gaba receptor upgrade “coincidence” as has been postulated here before, this is a re-poisoning plain and simple.

    However, now put 2 + 2 together.

    WHY? Why does Fluoride cause people a problem now, when prior to Cipro it did not cause them a problem?

    The answer should be very obvious, though there are 2 parts

    • Ruth Young July 1, 2016 at 5:37 am Reply

      Jason,
      Are you actually trying to drive fellow floxies to commit suicide? Words like “refloxed”, “repoisoned” and “new damage” are terrifying and hurtful. Yes, some floxies have issues with mercury toxicity or fluoride toxicity and some people who were never floxed have those issues too. But not all floxies have problems from either of those things despite exposure, because their bodies are able to detox those and the many other toxins found in our environment. I have eleven amalgam fillings and I sometimes drink tap water. I don’t eat organic and sometimes I eat cheap meat (not often)– and I am pretty much at 100%. Better than 100%. I think it unfair that you keep attacking me right at a time when you know I don’t have time to respond since I work as a pyrotechnician. Well, this morning we are going in a half hour later, so I have a few minutes. I have been tolerating ten hour days doing hard physical work for much of that time and my body is tolerating it and bouncing back the way it did in my twenties. Sure, I get a little sore but by the next day I am able to do it again and after ten hours I’m not all that tired. I have had no nervous system symptoms and I sleep just fine. I healed all the way. I am careful to keep my magnesium levels up, because I know I do not have normal reserves of magnesium yet. I know that I could still get some more GABA receptors healing and that could cause a relapse but it would be short lived. I would say based on how my body is handling this week I have normal mitochondria. Maybe better than just prior to my getting floxed. People do heal from getting floxed without complication despite multiple strikes against them. I’m on the cusp of menopause in addition to drinking some tap water and having eleven silver fillings and not always eating clean. I’m no spring chicken and not living in a bubble by any means– I’m living a completely normal life. Why not focus on that? I also know five people living within a hundred mile radius of me who healed completely from getting floxed, except one has some tendon damage to her knee that did not heal perfectly even with surgery. But other than that they all had severe reactions, all healed 100% and none posted a healing story online. One lives across the street from me. A lot more people heal than we know. Let’s focus on that and give people hope.
      Ruth

      • tarkonis July 1, 2016 at 7:15 am Reply

        Ruth I totally agree with everything you have just said. Your story and hope has been a constant light for me. I am eleven months out now and my nervous system is still pretty badly affected. All this after two tablets. I am still totally unable to tolerate caffeine, my eyesight is badly effected, my tendons still hurt, especially my knee that I pretty much wear a support bandage on 12 hours a day. I have taken a lot of supplements to no avail. I never really cleaned up my diet so thats the net step really. My doctors are clueless and im not getting any answers. 😦

  21. tarkonis July 1, 2016 at 1:33 am Reply

    Jason,

    While many appreciate your advice and informed opinion on FQ toxicity, I dont think many appreciate your tone which seems to undermine the hard work and assistance Ruth has undertaken. While you may not agree with her opinion and research, her words brought hope to me during a very difficult time.

    In your last post, you go on to again to shoot down Ruth’s Gaba Receptor hypothesis (because it is, after all, a hypothesis, as is most if not all of this opinion is hypothesised), then comes the entire sentence prefaced with the term “ACTUAL research”, implying that Ruth’s research is less valid than your own.

    Ruth may not be correct, but give her some credit for trying. This is not the page to be shooting down people’s hope. If you wish to discuss the merits of your own research I would encourage you to do so in your own thread.

    • Ruth Young July 4, 2016 at 7:02 am Reply

      Dave,
      I am sorry to hear you are still struggling. Thank you for the kind words. Damage to GABA receptors does put a huge amount of stress on our bodies and it takes a long time for our nervous systems to get back to normal. One point Jason has made is that that causes so much stress on our adrenal glands that we can actually end up in adrenal fatigue. I know that some of what I have experienced post flox is due to increased production of stress hormones and that this has continued to be an issue despite my sense that I have very nearly a full complement of GABA receptors at this point. Well, I’ll say I have an adequate amount of them. It will take a long time before that situation is ideal, but I am at least past the point where the process of upgrading them is tortuous. It could still happen but I think it would be a very brief relapse if it did.

      But the stress of going through that puts a lot of pressure on the adrenal glands. So you may want to look into adrenal fatigue, but you are not going to be able to easily self diagnose that or really treat it all on your own. It is not something floxies can give each other advice about, because unlike GABA receptors that follow a certain pattern and certain things (very few) can be done to help them upgrade, everyone’s adrenal glands are going to be in a different situation.

      I feel like I am simply producing too many stress hormones at times. That is not adrenal fatigue, but it can lead to it. Another person may have reached the point where their adrenal glands are no longer functioning well because they were not designed to crank out stress hormones 24/7. So now that person is symptomatic because they can’t produce enough of certain stress hormones. I imagine it is even possible to fluctuate between those two states during healing from floxing.

      Our goal has to be to take pressure off the adrenals by keeping our own stress and feelings of panic down to a minimum. One thing Dr. Whitcomb drove home to me is that meditation causes actual physical and measurable changes to our bodies and brains. I have gotten away from meditating and relaxing as I used to do every day and I should probably go back to it. Even though my GABA system is getting there the rest of my body is still reeling from everything I went through. And the aftermath of having endured such stress can cause actual physical and chemical changes to my body.

      After reading up in adrenal fatigue I realized I had a lot of symptoms of it after my first husband died and then two months later I started a horribly demanding student teaching assignment (teaching 13 year olds) during which I had to work two jobs in addition in order to support myself. People who were not floxed can end up with physical problems from stress.

      But those problems can be treated. You need to know where you are really at with it and unfortunately a lot of doctors don’t believe in adrenal fatigue unless you are all the way at zero function. Hard to believe they don’t realize there could be a spectrum of problems there, ranging from very mild to full blown Addison’s Disease. If your research leads you to conclude supporting your adrenals is the best way to kick start some more healing I actually would suggest you work with Jason, because he does know about that, although ideally you need to find a good naturopath also.

      Jason may lack tact, but on the issue of supporting adrenal function he does not lack knowledge.

      I had a very dear pastor friend, now with the Lord, who was not acquainted with tact either, but if I had let his lack of that social skill drive me away from him I would have missed out on all he taught me about the love of God that is ours in Christ Jesus. He was the best Law/Gospel preacher I have ever known. So don’t rule out help Jason could provide. I am never going to agree with him on the issues of antibiotics being in meat in clinical doses or clinical doses of antibiotics being released from our fat cells years later. I know too many smart people in multiple fields in science and medicine who would disagree with Jason there.

      But on the subject of supporting your adrenal glands he does know a lot, and maybe could help you.

      I will continue to pray for you. Hang in there! I believe this does get better with time for nearly everyone.
      Ruth

  22. Tami July 1, 2016 at 6:54 am Reply

    It has been 9 months for me and I still am not at 100 percent. What is the one most important supplement recommended. Doctors said I should do ch-elation. I personally read about this procedure and it really seems a little drastic. Can anyone give me some advise?

    Best to all floxies!

  23. Jason July 1, 2016 at 2:22 pm Reply

    All – I am sorry if this looks like an “attack”, this is not an attack and I stated as much in my reply to Nicole early on and I PRAISED Ruth for all the MASSIVE amounts of time she spends to try and help people and give them hope. That is exactly WHY I think it is important that she acknowledge obvious truths about FQ Toxicity and not call them “Myths”, because many people are reaching out to her and important information is not being relayed to people, information that can help people SUFFER LESS and is readily available right on this website it is just there for anyone who takes the time to go through it, what I am in particular talking about here is ALL the people’s experiences over the last 4 years. I went through this, it took a LOT of time and I consider it the most important part of my FQ research, and I highly recommend others do it (and especially anyone who is trying to help others) as many things become very obvious after doing so.

    Ruth, what would you say to poor Lee on the front page right now? Should we give him hope by trying to convince him that when he goes to the Dentist his Gaba receptors are actually upgrading and he is getting worse because he is actually healing and it has nothing to do with the Fluoride in the Anesthesia? This has been the approach thus far here

    OR

    Should we agree with him, since he has already come to the correct conclusion, that the Fluoride IS the cause of the Flare (multiple times over decades it is undeniable), unfortunately damage is being done and that is why he has a flare up, joints are falling apart etc AND by AVOIDING more exposures HE WILL GET BETTER and stop having flares/relapses from YES a RE-POISONING that would NOT be such a problem if he otherwise did not STILL have toxins lingering in him. (simple logic really as I tried to outline above)

    Which hope do you think is more useful?

    The same goes for the meat with Antibiotics, it IS a problem, why deny it or tell people “stories” about Gaba receptors and healing, this hope is not useful right? Don’t you think it is a lot more useful that they avoid the actual “trigger” of the relapse more Cipro in the meat? I sure do, and I know most everyone else does too since now they can protect themselves better and take appropriate actions when/if it happens.

    If we deny toxins as being THE problem at hand, and the damage from them and this being something that can CONTINUE to be a problem for people, including preventing them from healing, causing flare-ups etc and we try to tell them it is something else we have failed to protect them and this is the unfortunate and I hope now very obvious truth which I am trying to convey here, and my tone might have been a little strong to try and make these points more clear, again I apologize my intention here is to GIVE HOPE and have people SUFFER LESS I hate seeing people suffer especially at the hands of the Evil.

    Of course there IS much much more to FQ Tox than just toxins of course, and this is something I have studied in great depth and where my background helped a lot as I have knowledge and in many cases extensive knowledge in each of these areas. Toxins are huge, DIET & GUT health are very very big factors, Cell damage and Collagen issues, DNA and Mitochondria damage, Liver & Kidney damage, Gaba damage, CNS & Nerve damage, Adrenal damage and issues, Thyroid damage and issues, and the list goes on. Not everyone suffers with the exact same things or all of these things, and of course the GOOD NEWS is people HEAL from these things almost ALL THE TIME (especially when they do the right things to help).

    So this is why I have posted here again, because people absolutely need hope, but hope based on what is really happening and what has happened for years and years, again all the evidence needed is right on this website anecdotal sure and repeated over and over and over again and importantly based on how the body actually works and Science etc. The “truth” sets people free, we need to be careful about hiding it. We can butter things up sure, and try to use less “scary” terms, but we are not really helping by doing that and can actually let them get hurt more as I have clearly shown (we can use slightly different terms for anxiety-sake but ones that still acknowledge facts). We live in a VERY toxic World, this is widespread information at this point, every single Doctor worth talking about acknowledges this, the information is there and virtually everyone knows this, and as we see right from Tami’s post right above this people’s Doctors if good ARE going to tell them this and that it IS part of the problem, so instead of ignoring these points we really have to embrace them if we want to benefit from the information. That is the point I hope is getting across and will leave it at that now.

    I am glad to see you have come around on a couple things, those are useful and can definitely help people if you talk about them. I’m also glad you are healed and doing well. People should know though that even the lying evil arseholes like the ADA NOW (because of studies they can’t deny it like they used to) admit that Mercury fillings leak every single day and it is highly toxic, they contend the amount is too small to affect people, Experts know otherwise, some are lucky and excrete at higher rates, Floxies generally are not in this category at all this is pretty clear. Depression is a common Mercury symptom something you might want to personally think about for yourself considering your history. Folks should also know that Vaccines & Fish are two other big sources of exposure.

    So yes let’s focus on all the hope this brings with it indeed, I am Mercury poisoned and have been for at least 30 years and I got to 85% healed from FQ Tox in 12 weeks, 95% in 5 months from 27 symptoms, and without directly addressing Mercury, and there are many other examples out there. People have made some very miraculous recoveries, and some by even doing some of the WRONG things as has been seen time and time again.

    NOTHING I have posted here takes away ANY hope from anyone, it is exactly the contrary, by having more and accurate information on what causes people to suffer more, people can avoid those things and suffer less, this should be pretty easy to see I hope and this is what history and science prove. The body is an AMAZING healing machine, as long as we protect it from further damage and give it what it needs to do its job. Good to healing to all

    • Jason July 2, 2016 at 12:24 am Reply

      BTW Ruth – I did not plan my correction of your “Myth” post around your career and holidays which was not even a thought in my mind, someone that consults me told me about the post and asked why you were saying these things (and this is far from the first time)

      If you or anyone else here would like to learn some of the reality of what is happening with toxins in the body and what can be done about it from someone who actually knows and teaches Doctors on the subject (sending it to “Dr Whitcomb” would be a good idea…) this is a REALLY GOOD nice short 12 min video that touches on many key points on the topic, and includes one reason why some Floxies don’t heal if you watch closely (and also mentions a key mistake many people make including one you did yourself).

      • Ruth Young July 2, 2016 at 5:28 am Reply

        Jason,
        I am sorry but it is very frustrating to be attacked for trying to help during the time of the year that I am the most busy with almost zero time to myself. I tried to help by describing what I feel is true for most, but not all floxies, and what was the course of my own reaction. I had every symptom of benzodiazepine withdrawal including the classic burning which came later and my pattern of recovery followed exactly the pattern of recovery from Benzo withdrawal– cycles with some ups and downs but gradual healing and diminishing of psychological symptoms, of burning sensations and of tinnitus and even that torture insomnia. There is plenty of actual research showing that FQ’s damage GABA receptors, especially when in combination with NSAID’s. There is plenty of research showing that taking an FQ while dependent on a benzodiazepine can throw you into immediate Benzo withdrawal, which is hell on earth.

        But FQ toxicity symptoms cycle for other reasons as well. Mito damage cycles as it heals as shown by the fact that fibromyalgia sufferers deal with flares and remissions and that is widely considered to be a disease of the mitochondria.

        Healing can also cycle because our bodies, amazingly, can feel pretty much ok when we are actually having significant problems. This is the danger of FQ’s– people say they felt fine after Cipro but they were far from fine. A Floxie can feel pretty healed but not actually be there yet and then they do too much, or yes, get exposed to a toxin that a healthy body could easily deal with, and they have a set back. Returning to supporting the body and decreasing activity level for awhile will put them back on track to feeling well. I had a relapse that was from magnesium levels dropping when my doctor said I could stop taking it since my blood levels had come up. Almost all my initial symptoms came back including neuropathy of temperature sensitive nerves. All the symptoms reversed when I took magnesium again. Many relapses may be more about deficiencies than toxins or anything else. It is very hard to replenish the lost functional minerals and antioxidants that FQ’s strip away from us. It takes time.

        It takes a lot of time to heal from getting floxed. Doctors who know about FQ toxicity say a year out is nothing. And yet in some ways, considering the blow to our bodies, healing can be incredibly fast. Lisa went from being barely able to walk to climbing mountains again in four years. In just two I went from barely being able to walk to again being stronger than most women and having normal stamina and exercise tolerance.

        We can return to a normal life– most of us. Not all, and that is sad. But most of us are going to be just fine. And even if we cannot heal all the way we need to find ways to live again. That is what Floxiehope is about. Finding ways to live again.

        Yes, our world is full of toxins but as our bodies heal we will be able to deal with those toxins again. The harder thing is overcoming fear. Thanks to your negativity I felt afraid to order anything at the restaurant last night because you are always saying there are antibiotics in the meat and mercury in the fish… Honestly, I have been eating exactly what I wanted since I got floxed and I still healed to nearly 100%. Maybe I am 100%. Does a little tendon damage and a weak foot/ankle really count much against being 100%, especially at my age? Call it 99% and be done, but give me another year and I will be all the way there in every respect. I healed to 100% with eleven amalgam fillings, being on the cusp of menopause, eating anything I want and drinking fluoridated tap water occasionally. Why is my story not valid or important but you must tell about every hard luck case, every person with complications that are keeping them from healing?

        Readers will apply those complications to themselves, to their own uncomplicated floxings that will heal within a couple years, and decide that their case is complicated, that they cannot heal, that that poison lives in their bodies and they are just being refloxed all the time, that the world is so full of toxins that they cannot live in it. And some may choose not to.

        So I will keep saying that cycling symptoms are part of how this heals. The FQ is out of your body– it may be stored in fat for a couple months and come out slowly in sub-clinical doses over that time, but years later? No. It’s gone. I will keep saying that the chances of getting antibiotics in meat is slim to none. It’s illegal to send an animal to slaughter with antibiotics in its system. It is not cost effective. Why pump them full of antibiotics right before slaughter? The filthy overcrowded corporate farms that need antibiotics to keep their animals alive are all about cutting costs, not throwing away antibiotics on an animal going to slaughter in a couple days.

        Drugs like Cipro must be stored at certain temperatures. The freezing and cooking meat goes through would be outside those temperatures. If you are still worried take a magnesium pill with your meal. Magnesium deactivates FQ’s. They tell you not to take it with a clinical dose so the small dose in meat, if it is there, should easily be deactivated by a couple hundred milligrams of magnesium.

        I think bacteria is the greater worry as far as toxins are concerned. My late husband worked for a short time repairing the meat cutting and tying machines in grocery stores and butcher shops. He says the grocery stores were scary– just filthy. Undercook that meat just a little and you are getting an unhealthy dose of something and it does not have to be an FQ to make a Floxie react. Probiotics are vitally important for us and I would think some relapses are due to a lack of those.

        I think it is psychologically healthier for us to look at how we can build up what the FQ stripped from us, to make our bodies again able to deal with all that living life entails: dealing with stress and stimulation, dealing with unhealthy bacteria and toxins in our food and environment and dealing with physical demands of exercise or manual work. Our bodies could deal with those things before we got floxed and my body is proof that they can return to a state where they can deal with them again. Instead of avoiding everything in fear, I look at it as wanting to put as much good into me as possible including positive thoughts free from fear. I try to make healthy choices and avoid toxins (eventually I will even get my amalgams and root canal out of my mouth but it will be done safely after much research) but I don’t react in fear if once in awhile I slip up and eat that donut or drink a little tap water.

        I want to say to the terrified and sometimes suicudal people who contact me that your chances of making a complete recovery are good. Take it slow, time is on your side. Healing from damage to your autonomic nervous system is a mind game– most floxies are stuck in fight or flight for whatever reason– and you need to work at controlling your anxiety, being calm, and learning to relax again even when your body does not want to let you. Look for what is good in every moment, practice gratitude for life because it is precious even when it is difficult, and know that likely a year from now your world will be a very different one from the valley of the shadow of death you now walk through.
        Ruth

        • Jason July 2, 2016 at 2:21 pm

          No worries Ruth and believe me you are not the only one short on time and unfortunately I have mostly wasted mine here once again. There are just so many things off in those ‘ideas’ that I’m going to leave you with them understandably you want to try and defend them as they are mostly all you have it is unfortunate though for others that clearly you are not interested in learning and missing many of the main points here and focusing only on the ‘negative’ aspects. I will pray for others and encourage them to do their homework to find out what is really happening and how to properly deal with it; as someone who has 10 years of research and experience in the Health field I can assure people healing is a LOT easier when you actually know what is wrong, everyone’s job is to figure that out in their own case and then how to properly deal with it and Fq tox is no different in this regard and answers, while difficult to find and multi-faceted as somewhat mentioned above, ARE out there.

          Its worth repeating that information is power, but only when it is accurate, that is key. EVERYONE CAN HEAL (and there is no need to live in fear or come to those conclusions Ruth mentions) when they have the correct information or even in some cases just get lucky and their body mostly heals on its own in time; don’t rely on luck though is my advice, do your research, those that do and look in the right places will eventually find answers and “reasons” for things (like stuck in fight or flight etc) and can heal MUCH faster than those that don’t. Good info hunting and healing to all

    • Ruth Young July 6, 2016 at 6:53 am Reply

      Jason,
      Although we will never agree about how long FQ’s can stay in our bodies or about the possibility of receiving a high enough dose of FQ’s from meat to actually reflox us I have been looking into adrenal fatigue since you have mentioned it. Although your responses to me have been quite unkind and in a tone could produce panic in already scared floxies, I am willing to look past that. I had a dear pastor friend years ago who was quite blunt and lacking in tact, but once I got past that I found him to be an enormous blessing in my life. People who turned away from him because of his personality missed out. I am smart enough not to make that mistake with you.

      I think we all look at this through the lens of what happened to us. And for me, it was GABA receptor damage that really caused the most harm– both times I took Cipro. If you haven’t experienced a significant loss of GABA receptors (and I mean really significant, enough to cause hallucinations) you can’t know what that is really like. But I also healed remarkably quickly from everything and did not have significant damage to my organs, including adrenals. I think most floxies, though not all, have some loss of GABA receptors and most floxies (maybe all) end up with their adrenal glands being stressed because of the experience.

      From my own experience I would say it felt like the GABA receptor damage caused my adrenals to put out a massive amount of stress hormones pretty much 24/7. Relaxing could make that situation worse. But being in a situation where my body actually would have produced adrenaline in response to a stimulus usually caused a cessation of its production for several hours following. Like when I hand lit in a fireworks show just four months out. Right after that I felt the most normal I had since being floxed. I felt relaxed. My head felt clear, my heart stopped racing. It was like actually calling on the adrenals reset them. Temporarily.

      So I am not sure that your fear of stimulants is always a concern for everyone. Early on, though the caffeine in dark chocolate made the skin on my left arm burn briefly, I would feel fine after having it for quite awhile afterwards. One treatment for protracted benzo withdrawal is to hospitalize the person and give them a stimulant. This seems to push the GABA receptors to upgrade and maybe it helps normalize adrenal function also. That was my experience with stimulants (in very small amounts) and with stimulating experiences. They seemed to push me to heal.

      But I think when you get farther out, like maybe after a year, the issue could become not so much GABA receptors as the fact that your adrenal glands have been under intense stress for a long time. Just as I am feeling like I can handle more stimulation it may actually be a time to continue to avoid it for the sake of my adrenal glands. Caffeine is probably worse for me now than it was initially. I should probably be avoiding overdoing it on anything that used to increase my symptoms: driving while listening to polka music, using the computer or my phone, watching tv, doing things that require intense concentration and consuming foods with caffeine or MSG. I need to keep doing the things I did initially: meditating, relaxing, listening to music, taking quiet walks in nature.

      You helped me to see that the healing that remains for my nervous system now is not so much GABA related as that my adrenal glands need support. Probably for at least another year the more I can support them the better. Long term keeping a balance between stimulating and restful activities and limiting or eliminating sugar is the right way to go. I never was heavy into caffeine, besides what I get from dark chocolate or an occasional cup of green tea.

      It is still possible to get symptoms from healing GABA receptors even years later, I believe, because after people withdraw from a drug they can suddenly, even a couple years later, briefly experience the symptoms of withdrawal again for no apparent reason. My thought is that the body heals a little more of the damage done by the drug. I have a greater understanding through this experience of what happens when a person becomes physically dependent on a drug. I know people who live(d) with addiction and it helps to understand the physical causes and see it as a much more serious problem than a moral failing. We all have moral failings, but few of us suffer as intensely as a person addicted to a substance. When Cipro damaged my GABA receptors I learned what it feels like to be an addict in withdrawal. It’s pretty much a little trip to hell.

      But thanks to your posts I am seeing how going through that hell can damage our bodies, and that even though GABA receptors absolutely do upgrade, the process of getting there puts stress on other organ systems.

      Which brings us back to the importance of people controlling their own fear and stress. Your body is going to do what your body is going to do while GABA receptors upgrade. But if you are stressed and freaking out even though normal windows where you would have felt ok you are not only increasing your suffering, you could be stressing your adrenal glands and exacerbating that issue or even creating a new problem with your adrenal glands that might not have surfaced.

      My greatest fear for floxies going through that initial hell of living with damaged GABA receptors is that they will take their own lives. I think we need to be very careful to avoid hurting people by saying things that feed into fear or hopelessness. A normal brain would not interpret things you said that way, Jason, but a brain lacking GABA receptors is not perceiving the world in a normal way. It does no good to warn a person about toxins and adrenal fatigue if they decide to commit suicide tomorrow. They would have been better off not knowing about those things in that case if by not knowing they could keep on coping. Ignorance isn’t really bliss, I know, and I am in a better position to care for my body knowing about adrenal fatigue. But we just have to be very, very gentle and careful in how we present that information.
      Ruth

      • Jason July 15, 2016 at 10:44 pm Reply

        Hi Ruth and all. First off let me apologize again to you and everyone who has been reading, I get a little uptight when it comes to Floxies and information about Floxing because I have a big soft spot for them and they are just so very very vulnerable, in so many ways, anyway I am sorry I can make many other excuses here too like my Mercury poisoning etc but the truth is I should have been more gentle and also as you kind of mention mindful to the general type of people coming to your page (folks with high anxiety) I will really try harder on this in the future and try to get a little away from my tell-it-like-it-is nature.

        I’m really glad to see that you seem to be opening up to some info, and that you found some things in there to even apply to yourself that is really great, even acknowledging that not everyone has Gaba receptor damage is really important and one of the things I was concerned about. It does appear that ‘some’ people “seem” to mostly have that kind of damage and it would also seem there is a smaller subset of people who indeed could closely resemble someone going through Benzo withdrawal and the waves (cycles of flaring symptoms) and windows (would seem to be a gaba upgrade unfortunately usually short lived for a quite awhile, leading to new wave…) of that hell. Note though there is much more going on here than anyone in the Benzo forums realizes and even Dr. Ashton in the Ashton Manual, really for the most part they are quite lost and have barely any useful advice to share. For Floxing there are indeed many more people who do not fit into this category at all, and where Gaba is just one of many other issues some of which I noted but there are many more, all of this of course making it impossible to have a one solution fits all as everyone is affected differently in their own individual ways, this is where we have to be very careful with over-generalized sweeping statements and absolutes (you might remember this topic from the past, where I admit I am guilty of this too at times) where one example can be this big group of folks where Gaba receptor upgrades just don’t at all apply to their Flares/Relapses and there are many other reasons (some I have listed there are more) are the factors at play for them. Fortunately and unfortunately these same reasons apply to both groups, where the good news is through awareness most can be avoided and others are actually helping the healing process.

        Adrenals are one of those and can causes flares in both groups actually, and as you suspect it is a fairly complex component of each. Adrenals are complex just on their own, as is also diagnosing and treating the many root causes of the Adrenal issues themselves (stress is one but there are many more), but what really makes it much more complex is when it is only one component of a much bigger picture of illness, as most of the components all interact and affect each other. For example many Floxies lose a lot of their hair in the first 6 months post-flox, this is generally a Fluorine/Iodine and Thyroid issue that goes mis/un diagnosed time and time again and the Brain, Adrenals, Gut and more are all part of the same issue it is not just the Thyroid. No one component can ever be really looked at and addressed separately in someone’s Floxing (or Health in general) if they hope to get better in a decent timeframe, the whole picture really needs to be assessed and addressed as a whole, accounting for the many factors involved and only someone who understands all the individual components AND how they interact with each other is going to be able to help most times. It’s a little akin to a car with engine, transmission, brake and tire issues, and then replacing 2 of the 3 flat tires and expecting that to fix the car and have it drive well again. Here is an applicable Human example of how many things can tie together: http://www.wellnessresources.com/weight/articles/stunning_discoveries_regarding_iron_obesity_candida_thyroid/ Iron levels => Gut Health => Inflammation => Blood Sugar => Thyroid. This is only one tiny example, but one where it is easy to see how someone can just take Iron for the Iron issue and expect that to help, leaving the true underlying issues untouched. Sometimes these kinds of combinations run into each other too, one cascade of domino’s running right into 1 or even several others, the Human Body is crazy crazy complex, and unfortunately Floxing really can be too. While most Doctors don’t have an understanding of FQ tox and all the underlying mechanisms in play, good Naturopaths and Functional Medicine Doctors DO understand these complex combinations and how all these things interact together (as do I) so for someone in pretty bad shape or just someone who wants to heal as fast as possible finding someone like this can be paramount to their healing.

        Again all, please please believe me I am not in any way shape or form putting this info out there to take away hope, or to complicate things for people, I would never ever dream of such cruelty. Info is power, and here that power can be used to heal ones self, and with it I truly believe EVERY single person can heal, I have seen many many miraculous stories of healing over the last 10 years from very very ill people, Floxies are no different and some of those were indeed Floxies. Only through awareness can someone realize something might actually be an issue for them like what happened with the mention of Adrenals, and then and only then can someone try to learn how to deal with it to get better, and that is the ultimate goal for all and certainly what I want for everyone here. Tons of hope folks there really is, the body is an absolute marvel of design that can just get overwhelmed at times, once we relieve these burdens and support it with what it needs it works again just as it should

        • Jason July 15, 2016 at 10:51 pm

          Ruth I was comment 666 on your page LOL oh boy I guess that does not bode well for me, there is now an Angel and what I have already been made out to be a Devil on this page. hehehe (though you did compare me to a Pastor at one point, ok whew lol)

          Btw Ruth after having me jump over your ideas here etc I must highly commend you for recommending me like that to Dave the way you did with the vote of confidence, that really shows a lot of (good) character on your part to let our disagreement slide like that in the face of trying to help someone, again I will repeat you are an ANGEL for the amount of effort and time you have given the Floxie community 🙂 This is a big reason I am here, because you are spending this effort and if I can “educate the educators” even just a little, that reaches and helps a whole lot more people than I ever can just myself. Good health to you

        • Ruth Young July 18, 2016 at 2:13 pm

          Jason,
          My pastor friend would have noticed the 666 thing and that would have amused him greatly!
          Ruth

  24. Vee July 1, 2016 at 8:25 pm Reply

    Sarah June 22, 2016 at 11:23 am
    What bacteria did your urine sample show when you sent it out to a special clinic?

    • Sarah July 2, 2016 at 7:02 am Reply

      Vee,

      I can’t remember to be honest, there were around four different types that were/are causing ‘minor’ problems, such as over activity and burning when passing urine, but as my consultant explained, because I wasn’t having a ‘flare’ when I sent the sample, the bacteria sp. that causes the major problems couldn’t be identified. Next time I have a flare, it should be possible to pinpoint exactly what causes the majority of my UTI/IC issues and treat it appropriately.

      Just as a matter of interest, all of the sp. of ‘nasties’ that my consultant found in my urine aren’t usually found in healthy, pain free bladders, which I thought was quite interesting.

  25. vee July 2, 2016 at 11:15 am Reply

    Sarah have you read Angela kilmartins book about uti or seen her blog?
    Angela kilmartin dot com

  26. Cindy July 4, 2016 at 1:38 pm Reply

    Has anyone got burning sensations in their mouth which intensify after eating?

  27. Mary July 7, 2016 at 10:38 pm Reply

    This is a question for Ruth or anyone else here who might have a thought on this. I am 64 with moderate High blood pressure. I take meds for it and it is controlled well. Today my Dr. recommended taking a baby aspirin every day to thin my blood some. So, like Ruth, I have CNS damage but from Levaquin. I am mostly recovered except tinnitus and insomnia. I have just searched many post here and elsewhere trying to decide if I should take the aspirin. Most places it says it is an NSAID and I swore I would never take one again. But somehow I thought it was ok for floxies. I can’t find anything definitive and just don’t have time to keep searching. I would appreciate any input and maybe ideas for a natural alternative to thin my blood.
    Thanks in advance.

    • Ruth Young July 8, 2016 at 4:13 am Reply

      I seem to remember reading that the baby aspirin regimine is not as useful for women as for men. I saw it a long time ago so that may not be the most current info, but the point of what I read was that studies done to date had not included enough women and when data just from women was examined the aspirin seemed to have little protective effect for them.

      I think floxies are ok with just plain old aspirin, but I would not risk my GABA receptors on that. However, NSAID’s do eventually become safe for floxies. I was floxed unknowingly in the 1980’s and definitely took NSAID’s since then, but it might have been a good decade in between, since I seldom take anything for pain.

      The problem with NSAID’s appears to be that GABA receptors once exposed to a quinolone become susceptible to very great harm if then exposed to an NSAID. This is not 100% across the board true for all people. Some people can take Cipro and an NSAID together and have no reaction whatsoever. A person can be floxed without their GABA receptors being harmed at all. The aspirin could be perfectly safe for you. Or it could cause harm to your GABA receptors and there can’t be many things in this world more unpleasant than healing from that type of damage to your nervous system.

      If you had no psychological symptoms when you got floxed and it has been more than two years, my guess is the baby aspirin is fine. Whether it is actually beneficial is something you may want to research.

      I will probably avoid NSAID’s for the rest of my life. I know that GABA receptors do upgrade and that once I am 100% symptom free NSAID’s should once again be safe for me, but I still won’t risk it. But I hardly ever took them before and I have found that an Epsom salts bath is the best remedy for sore muscles anyway. Personally, I wouldn’t do a daily baby aspirin regimine either, but I don’t have a doctor telling me to do that, so I know that makes it a more difficult decision for you.

  28. Mary July 8, 2016 at 7:42 am Reply

    Thank you for your reply Ruth, I did have GABA receptor damage…..Tinnitus, anxiety, brain fog,tremors…etc. I took Ibruprofin 2 days after I quit the Levaquin and have always wondered if that made my reaction worse. I am only about 18 months out and though I feel pretty good I still feel I have some brain fog issues ( just not as sharp as I used to be and short term memory is not as good). I also have read that aspirin doesn’t do everything they thought it did and actually can damage blood cells so I think for now at least I will try to find alternatives to thin my blood. So far I have come up with garlic and pycnogenol. I would still love to hear from anyone else that might have some input about that.

    • Ruth Young July 8, 2016 at 9:53 am Reply

      Pycnogenol is excellent. Dr Whitcomb recommended it to me. It may help with your tinnitus.

  29. Tami July 8, 2016 at 5:19 pm Reply

    Ruth
    I wondered if the Pycnogenol helped diminished your tinnitus? If so were can you purchase this? I am now 9 months out and still have the tinnitus, everyone I talk to states that it does not go away your brain adapts to the sound?

    • Ruth Young July 18, 2016 at 2:10 pm Reply

      The pycnogenol didn’t help mine because I have only taken it a couple times. I found it mentioned in some paperwork from Dr. Whitcomb that they print out for you after your visit. I found it a year and half later while cleaning my house. So I bought some. It is supposed to help with menopause symptoms so I actually gave it away to my sister because I had heard enough about her hot flashes. Not sure if it is what helped as she was taking a couple different things. I would say it does help with menstrual cramps. It is a bit stimulating– take it in the morning.

      My tinnitus went away. I have a tiny bit yet, but it is the same or maybe a bit less than what I had prior to getting floxed. So it definitely can heal! However, if the cause is loss of GABA receptors nothing is going to get rid of it without also slowing your healing. You just have to wait until the receptors heal. That seemed to be my experience– nothing I took touched the really loud Cipro tinnitus. Suddenly, it just started going away on its own for large blocks of time and that was when I noticed that my pre-existing tinnitus was gone. Since I stopped taking ALA it is back but not still less than what I had prior to the Cipro.

  30. Sophie July 18, 2016 at 3:07 am Reply

    Dear Ruth, first I would like to thank you for your posts which are always very positive! it s been nearly one year since I ve been floxed, and I m still having lots to deal with. I have joint problems including ankle and hip arthritis, sight problems and the worst for me is an autonomic dysfunction, which regulates so many things. (Digestion, heart, saliva, eye dryness…). So when I experience this ‘autonomic dysfunction’ at the worst, I have kind of fainting moments… in which I have spasms everywhere in my body including intestines… heart palpitations, shakiness, hot and cold, numbness in my face, fingers, muscle weaknesses… I don’t know if this dysfunction can stop one day or if it s irreversible… do you know anything that could help me? Thank you very much. Take care. Sophie

    • Ruth Young July 18, 2016 at 1:59 pm Reply

      Hi Sophie,
      I wish I could tell you about a quick cure for autonomic nervous system dysfunction, but there probably isn’t one. However, most people do get better over time. Time is on your side. My heart used to just pound in my chest randomly, for no reason. That stopped happening. I used to experience torture insomnia– every time I would begin to fall asleep everything would burn and hurt and my heart would pound and I’d feel panic. That stopped happening too. The heart pounding thing took about eight months to go, the insomnia nearly two years. For better than a year it came about every ten nights. But it does not happen now. At two years and five months I would say that I just keep feeling more and more normal, like my old self. Not 100% yet, but I think I will get there.

      It helped me to think of it as my autonomic nervous system being out of balance and that it wanted to get back in balance. That seemed more positive to me than thinking of it as dysfunction. Both parts are still there– you still have both “rest and digest”and “fight or flight” and over time they will work together as they are designed to. You won’t stay with fight or flight having the upper hand because we have neural plasticity. Our nervous system adapts. Yours will adapt and repair itself, but it is a slow process and sometimes when we feel the worst is when the repairs are actually being made. The more you can keep your own panic from rising the better off you will be. Your body is doing crazy stuff, but if you keep on believing that the problem is not permanent and will correct itself over time you will be a lot better off. It is hard to control your own stress, but it is important.

      I think the time I put in relaxing and meditating helped me a lot. I got really bored of spending so much time relaxing, but it helped take the stress off my adrenal glands. Damaged GABA receptors can cause your body to pump out stress hormones every time you have a down cycle in your symptoms. You have to try to push for good parasympathetic nervous system function whenever you can. It takes the pressure off your body and it tells your body that you want the “rest and digest” part of your nervous system to function well again. Constant panic tells your body that all you really need is “fight or flight.” Not saying that you are panicking or anything, but decreasing stress is always good if you can manage to do it.

      I have recently added bovine colostrum from Sovereign Laboratories. I think theirs is the best. It’s something to look into. If you are lactose intolerant don’t bother. It’s basically the milk baby cows get in the first hours of life. It has a lot of antibodies and it helps to seal leaky gut. Sometimes our gut is a bigger key to all this then we realize.

      I have also started getting frequency specific microcurrent (FSM) with good results. It is supposed to be able to help balance the sympathetic and parasympathetic nervous systems. I learned about it while taking a class on treating chronic pain. The instructor’s theory is that chronic pain is often really parasympathetic nervous system weakness. I told her about my own autonomic imbalance and she told me about FSM. I told her I was doing acupuncture already. She said FSM is better– and it is non-invasive. So you could google it and look for practitioners in your area. That is what I did.

      Good luck and happy healing!
      Ruth

      • Sophie August 4, 2016 at 3:44 am Reply

        Dear Ruth, Thank you sooo much for your answer. I DO hope you are right ans that one day, things will start to get better for me.
        If you can, have a look at this site please. Lisa sent it to me. This is exactly what I m going through when I have the general malaise…I dread these moments…
        http://fluoroquinolonethyroid.com/book_page/how-my-flox-symptoms-were-affected-by-th-and-iodine/the-cns-symptoms-a-part-of-my-syndrome-of-symptoms/
        What do you think? I will try to see a thyroid doctor in France and have blood tests done but even that is hardly possible….
        Thank you for FSM. I ve had an appointment in a chronic pain centre and they will try TENS for me… it s electro magnetic current… so maybe it s like what you do…
        I will buy colostrum.
        I really appreciate your positive thinking and your philosophy. I m at a loss at the moment physically and mentally… it s been one year…I ve had a bad relapse, still feel very handicapped with my ankle arthritis and all the rest… I m 31, I see no progress and that is terrible.
        I would need some support from a positive person like you… if you have any time, we could skype once or exchange emails. I don t know if I do the right things to heal.
        Thank you for your help. Take care.
        Sophie

        • Ruth Young August 4, 2016 at 6:51 am

          Sophie,
          TENS is very different from FSM. It utilizes the gate theory for pain control– basically it is a distraction from pain. It does nothing to address the underlying cause of the pain, just dulls the ability of your body to perceive the pain for awhile. FSM uses a current so low that you would never actually feel it, but it is supposed to get the body functioning in a more normal way again. I would have to reread what I found out about it in order to explain it adequately. It was widely used for a long time and then fell into disuse in favor of pharmaceuticals. It is FDA approved to treat chronic pain. It increases your body’s ability to make ATP by 500%. It increases parasympathetic nervous system activation. You should be able to find FSM practitioners online.

          I used to feel like I wasn’t doing the right things to heal too. I would feel like if I could just find the right combination of supplements and take them at the right time or discover the right treatment and try it then I should be able to heal and I felt like it was my fault when I wasn’t getting better– I actually got worse before I got better– and that somehow I had missed something and should be able to fix this. I got sick literally overnight, surely if I just did my research I should be able to find the cure that would work just as fast…

          First of all, it is not our fault we got poisoned. And there is no way drugs that can do what the quinolones can do should be available for outpatient use when even the experts don’t know how to reverse the effects. Besides which, they cause harm in so many ways that what works for one will not necessarily work for another.

          Time is the greatest healer for all of us. It is difficult to accept that this generally takes 18-36 months for a turn around (longer for some people) but I think it helps when we do accept it– when we put our expectations of a healing time line more in line with reality and quit looking for that magic bullet and then feeling bad when we don’t find it.

          What works, over time, is supporting your body the best you can. If you are able to tolerate supplements and can keep food in you you have a lot going for you right there. Not that people with those problems don’t also heal, but if you are without those challenges be glad and know that healthy food choices and suoplements like vitamins C and E and magnesium have actually been shown in clinical research to help with FQ toxicity. Simple things can be powerful if done over time, especially when we give our body permission to take time to heal. I know people who have been sick for years with this and yet they say that their recovery is their own and they will recover in time, even if it takes them a little longer. Feeling like you are failing by not finding the cure is very destructive. I know because I was doing that for awhile. I did better when I focused on coping and always trying to find what was going right. There always was something that I could say I had in my favor.

          Tests showed my thyroid was low in the beginning of all this. I chose to do nothing about it except support my body. I have read of Floxies who tried to treat hypothyroidism after being floxed and got a lot worse. I have read bad things about the meds used for hypothyroidism. My latest blood test (last week) showed that my thyroid function has improved a lot. I think what helped was the FSM, the micronized purple rice supplement I take and the colostrum. The FSM improved my body’s ability to make ATP, the purple rice is packed with easily absorbed nutrients and the colostrum seals leaky gut. Not even sure if I had leaky gut, but I was covering all my bases. I feel like my body is a lot healthier now than before I got floxed. I have good strength and stamina and energy. I think I may still be lacking a few GABA receptors but I have to really overdo it either physically, mentally or both to notice it and even then it’s not anything in the beginning.

          Sometimes adrenal fatigue can look like thyroid issues. One can lead to the other, but you might not even have a thyroid issue at this point. Treating adrenal fatigue is tricky and should only be undertaken with the help of a physician who believes in it. Many docs only acknowledge a proven with adrenals if you have full blown Addison’s Disease. They do not see that the stress of floxing could put pressure on the adrenal glands and compromise their function but this reduced function could be less than full blown failure. Until you find a doctor to help with that supporting your body and reducing stress are your best bet.

          There are supplements that support adrenals– one of them is in the CalmPRT I sometimes take. The problem is that things Rhodiola Rosea (the main ingredient in CalmPRT) are great if your adrenals are just being stressed from pumping out a lot of stress hormones. Then blocking the production of those hormones for awhile is great. But if the adrenals are already failing and then you further block the production of hormones that you don’t have enough of, then things get worse. Make sure you get enough salt. People with adrenal issues sometimes don’t have enough sodium. If I crave a salty snack I have one. There is a lot of evidence sugar is far worse for us than salt, and I think the evidence points to stressed out people needing to keep their sodium levels up. Along lots of magnesium can interfere with sodium so either way, salt is not something we need to avoid.

          See how complicated this is? What a minefield we walk? We were out right in the middle of that mine field by medical practitioners. Makes me really angry. But don’t ever blame yourself.

          The number to order the purple rice is (727) 798-8764. If you are not in the USA it will be more difficult to get it shipped to you and will add to the cost, but if you are I do think it helped me a lot. It is just food, but highly nutritious food milled really small so it can get into damaged cells. I get the powder and just put a little in my water bottle and shake it up each time I take a drink. Using it that way you can stretch it, and it seems like even a little helps, especially if taken frequently throughout the day. People have seen thyroid conditions, adrenal fatigue, hypertension, high blood sugar and many other medical conditions start to reverse over time. But again– it takes time. It’s just a matter of giving your body what it needs and giving it time to heal while minimizing stress. If you use my name they send me a free bottle. Just disclosing that. I don’t care if you use my name or not, but I mention it because it has worked for me. My high blood pressure got better and my blood sugar numbers improved right away, within a few weeks. It definitely did something nothing else I tried could do.

          So now you have a few things you could try, but keep remembering that time is on your side. Keeping stress down is on your side. Being kind and forgiving toward yourself is key.
          Ruth

        • Ruth Young August 4, 2016 at 7:10 am

          Sophie,
          Ask Lisa to give you my email. She will do that for you.

          I noticed you are in France. Hopefully you will be able to access some of the things I mentioned. If not, remember that time is our greatest healer. I had just about everything described in the article you linked above– but it stopped. I got better. Getting floxed throws our bodies out of homeostasis– things just get so mixed up. There are probably other causes than just thyroid for what that article describes: balances between calcium, magnesium and zinc in the body, loss of GABA receptors, influx of stress hormones… It can feel crazy and like you are dying. But through it all your body is trying to restore balance. Don’t be afraid. Just keep hanging on. I think most people do get better over time, at least to the point that they can live fairly normal lives.

          We can chat via email if you want, but remember that I do not have all the answers. Nobody does. And my case was pretty uncomplicated: loss of GABA receptors and functional minerals/antioxidants. I had no other complicating genetic factors (other than a susceptibility to damage to GABA receptors), no other diseases or coinfections, my microbiome was harmed but not devastated, and my body’s ability to detox is very good. That being said, I went through a hell of a ride to get to about 98-99% healing, a lot of it psych symptoms I would not wish on my worst enemy. So I can encourage you as someone who has been there, but I can’t guarantee I have any suggestions that are going to be helpful for you. You can try what I did, if you are able, but everybody is different so it may or may not help.
          Ruth

  31. Tami July 20, 2016 at 1:24 pm Reply

    There might be hope with the tinnitus!!! What is ALA?? Would that probably benefit most people with tinnitus. I have been in recovery phase for now 9 months still pins and needles in my legs and fluttering, the toxicity really attached my nerves my legs in some areas have no feeling. When I walk I have swelling. I feel like I am 100 years old. Does this ever end?? I am so frustrated with toxicity. I sympathized with everyone who has been through this tragic experience.

    Best Tami

    • Jason July 21, 2016 at 12:25 pm Reply

      ALA is the strongest chelator of Mercury in the Body, and should NEVER be taken by anyone with Metal Fillings in their mouth, or by anyone who is suspect of having too much Mercury. ALA easily crosses the Blood Brain Barrier, and will bring Mercury from Mouth INTO the Brain as Metal Fillings leak every single day, ALA can also bring it out of the Brain when used correctly. ALA like Glutathione is a dangerous supplement, and should NOT be used by anyone who has not fully researched it and has not tested themselves for Mercury. There is a right and wrong way to use ALA, and even Naturopathic and Functional Medical Doctors (MD’s are completely clueless as usual) are NOT aware of how to properly use it, and WHEN. It is very unfortunate, but Naturopathic and Functional Medical Doctors actually do recommend these products without a proper understanding of them, it is not their fault it is the faulty training in this area that will hopefully one day be corrected.

    • Jason July 22, 2016 at 8:33 pm Reply

      Btw Tami yes for most people something like Neuropathy can indeed end, but there are those unfortunate ones that don’t seem to heal from it, it can be a VERY stubborn symptom to heal from very much like Tinnitus in that regard and of course if someone continues to do things that are not helping or harmful and/or fails to do things that can help they really lower their chances to heal. There are multiple root causes for Neuropathy in general and in the case of Cipro, and there is a HUGE list of “Do’s and Don’t’s” for this I now have somewhere around 7 pages of very important info on this now, and the list varies somewhat depending on each individual. Unfortunately most Doctors are ignorant and unhelpful with this symptom as has been seen time and time again over the years, and can even be harmful in cases like recommending toxic drugs and things like Glutathione IV’s and ALA (Ala has helped some with it sort of by “default”, many others did not get better or got worse). People are consulting me for this issue (and a multitude of other things I specialize in) as my rates are much lower than Doctors and I know a LOT more about it than they do and have first hand experience with it as well. If you would like me to take a detailed look into your situation you can ask Lisa for my email address. Good luck and healing to you

  32. Tami July 22, 2016 at 8:01 pm Reply

    Thank you Jason, I am going to stay away from that. I sometimes think less is best. Did you have twitching and fluttering? If you did or know of someone can you give me some insight. Jsaon did you have tinnitus? I pray everyday it goes away? I am so afraid to take any atibiotic!!

    Best Always,

    Tami

    • Jason July 22, 2016 at 8:53 pm Reply

      Hi Tami I guess I was putting together my post above as you were posting yours :). See above for more, but yes I had a LOT of twitching, I had PN, fluttering in the past, and Tinnitus too. Tinnitus in particular is one of the last things I am not totally sure yet of all the root causes for it (I know many and many possible treatments but have not confirmed all), mine is gone most of the time and was much louder and constant/persistent in the beginning, but even now still can come at times like late at night or first thing on waking and though I am used to it and it is very quiet now it still bugs me 😦 (I am currently in treatment that I believe will help over time). Oddly this too can vary for people, some people can have it more during the day and it fades at night and is not there on waking.

      Ps – Yes Antibiotics are best avoided when at all possible, which is most of the time. They damage our very important GI Tract/Immune system and can have a lot of other nasty effects in cases (like stupid Cipro, and many others). I just had a Bladder infection that got really bad last night with very high fever, I took every natural remedy I had that I thought could work, I soaked my sheets and could not sleep most of the night but today I felt GREAT and pain is gone!

  33. Debbie July 23, 2016 at 7:54 am Reply

    I assume the ALA you refer to is alpha lipoic acid.

    • Jason July 23, 2016 at 12:29 pm Reply

      Hi Debbie yes alpha linolenic acid is a essential Fatty Acid (body can not make it) that can be great for Health. Alpha lipoic acid too is important and great for many people, it just has a very very large caveat that most everyone is not aware of. I am Mercury poisoned myself, and one of the things I have to take (correctly) is alpha lipoic acid to get better (my metal fillings were removed long ago also which is critical)

  34. Tami July 25, 2016 at 7:47 am Reply

    Thanks Jason!!!! If you could send me your e-mail I would appreciate it !! You seem like you have a wealth of knowledge in the area. I have been from one dr. to the next diagnosed with lyme disease to mercury poisoning. The funny thing I was a athlete my whole life with no issues other than food and chemical sensitivities.

    Best

    Tami

    • Jason July 27, 2016 at 9:18 am Reply

      Hi Tami Lisa the owner of this website will send you my email (or already did check junk mail)

      Talk to you soon

      • Angie July 27, 2016 at 3:25 pm Reply

        Hi Jason

        I’ve been reading your posts for some time now and both you and Rith seem very knowledgable about the harms of these antibiotics. I took cipro in 2013. Jason I would love to speak with you more in depth via email. Can I please ask Lisa for your email as I have some questions to ask you specifically regarding my issues from cipro.

  35. Tami July 27, 2016 at 11:54 am Reply

    Thanks !!

  36. Jason July 28, 2016 at 11:37 am Reply

    Hi Tami, Lisa let me know email has been sent to you.

    Hi Angie and all. Angie sure you can ask Lisa for my email I can take on a couple more new clients currently, you better do it fast though because Lisa is getting married on Saturday and may go on a Honeymoon I’m sure!!!!! (make sure to give her congrats 🙂 )

    Here is some more info about me in case you, or Tami, or anyone else is wondering:

    I did not feel well for many reasons for the last 30 years. After going to 40+ Doctors and 10+ Specialists it was clear I was never going to get anywhere with them, that was 10 years ago when I started my own research into the many various common Health issues people and unfortunately myself suffered from. Eventually I also seen 5 Naturopathic Doctors who did shed a little insight into some issues but I was still not getting well. Eventually I figured out ALL the many many things wrong with me, what the root causes for those things were (very very key) and how to heal from everything and was finally on my way to Health. One day about 1.5 years ago I was terribly ill from a nasty Lung and Sinus infection and not getting better, I got desperate and went to get Antibiotics, this ended up being Cipro. I took 2 pills and was just starting to get better. On the 3rd day I woke up and my body was falling apart, within 2 hours I knew exactly what happened and made a plan to heal while studying FQ Toxicity for 5 straight months 16 hours a day 7 days a week. After 12 weeks I was healed to 85%, at 5 months I was 95% back to where I was, keep in mind this is still a chronically Ill person at this point and some of those issue were unaddressed, however the Cipro issues all 27 symptoms were now 95% gone, that was now approx. one year ago.

    Along the way in my Health Journey I have gained extensive knowledge in the following areas that is on par with “good Doctors” and exceeds theirs in some areas:

    – Fluoroquinolone Toxicity (there is no one anywhere with more knowledge on this topic and how to heal from it)
    – Heavy Metal Toxicity
    – Hair Test Interpretation
    – Detoxification
    – Cellular healing
    – Mitochondrial healing
    – Brain Fog
    – Gut Issues like Candida, SIBO, Parasites, Leaky Gut
    – Adrenal Fatigue
    – Chronic Fatigue
    – Thyroid issues
    – Anxiety
    – Insomnia
    – Depression
    – Other Psychological issues
    – Cognitive Behavior Therapy
    – Fibromyalgia & Muscle/Tendon issues
    – Arthritis & Joint issues
    – Peripheral Neuropathy
    – Genetics & Methylation issues
    – Diet & Nutrition
    – Extensive Supplement knowledge
    – Addictions
    & Much More

    Note in addition to 10 years of knowledge accumulated in these areas I also have personal experience healing from EVERY ailment listed. Yes I was one sick person, learning what I have was out of necessity. I am happy to report that I am doing great these days for the most part, I still have a lot of Mercury to remove which presents some symptoms here and there but yesterday I played Beach Volleyball for 3 hours straight and had NO issues, did not get tired at all had great energy etc and felt GREAT during and after.

    Due to the sheer amount of knowledge, and since my teen years always having a desire to help people, it only made sense that I started helping people. While I was healing from FQ Toxicity, I was posting info all over this website. Once I was over that hurdle, I started helping others directly one on one, at one point I ran out of money so I had to stop posting here altogether and only focus on helping those who came to me directly. My rates are currently less than a 1/3 of many of the Doctors people go too, and usually don’t get much help from if any (most who come to me have been to many Doctors to no avail), I am not out to get rich off sick people (like some) I just need to ‘eat’ while helping others. 🙂

    Hopefully soon I will have a website up with lots of info for people including how to help themselves heal from this mess, and there are many many ways to do that friends and I believe everyone can heal when they do the right things and avoid the wrong ones.
    Hang in there all and never give up

  37. Angie July 28, 2016 at 11:55 am Reply

    Jason thanks so much. I am going to ask her right now! Again thanks.

  38. tarkonis July 28, 2016 at 11:57 am Reply

    Hi Everyone,

    Does anyone have any idea why I have visual snow in my field of vison. It was sudden onset and the snow has stayed every day for nearly a year now. I’m close to one year out and the nerve pain and the snow are the two big ones for me. I could live with the physical pain but the snow/nerve pain I cannot.. I need some answers 😦 If anyone has any insight or can share a similar experience I would appreciate it.

  39. Marc Thavenot July 28, 2016 at 2:11 pm Reply

    I would like to comment on my experience with Jason and how he has helped me with healing. I was about 9 months out and was suffering very bad. I was borderline suicidal and having daily panic attacks, no sleep, burning pains, tinnitus, vision problems, and mental confusion to name a few. These would get worse and flare on a daily basis and overall things seemed to be going downhill. I went to a ton of doctor probably about 20 in total ranging from MD’s to specialists to eye doctors to ENT’s to Neurologists to Naturopaths and got nowhere and was at best being prescribed Benzo’s for anxiety which trust me is never a good idea. After contacting Jason and starting to follow his protocols and suggestions i started to see results. Its now just over 3 weeks that i have been working with Jason and i have started to seen huge improvements. Panic attacks are gone, Sleep much improved almost back to normal i would say. Energy level is much better. Pain and burning is also much better. Gut problems and stomach issues are much better. Ears are improving slowly and vision does seem like its improving as well. Overall i feel a lot better and finally stabilising to where i can be functional again. I am finally getting my life back!!!!! I think he has tremendous knowledge on this Floxing thing and all the aspects that it affects and he is extremely easy to work with. I can tell that he really enjoys helping people and is so easy to talk to and discuss things with. Jason i really thank you for helping me and it was every bit worth it working with you. Much Thanks Marc

  40. vee July 28, 2016 at 3:23 pm Reply

    How can we work with Jason? I am interested in how you got rid of panic and what is helping ears?

  41. Jason July 28, 2016 at 6:15 pm Reply

    All – I think Lisa is understandably inundated with Wedding Tasks, to try and lessen that burden I have now put my contact info on this page near the bottom on 2nd comment:

    https://floxiehope.com/2015/10/12/im-floxed-now-what/

    Please read over the whole comment before emailing.

    Good Health to all. Jason

    ps – Marc – It’s great to see you doing so much better, you were in VERY bad shape indeed 🙂

    • tarkonis July 29, 2016 at 12:00 am Reply

      Hi Jason,

      I don’t see your contact info on that page. Would like to work with you. Apologies for earlier comments just was worried about Ruth. Desperate times for me.

      • Jason July 29, 2016 at 3:07 am Reply

        HI Dave no worries at all I totally understand, and sorry to hear you are still having issues. If your email is correct further up this page I will try to send a test email.

        My email is on that “Im Floxed what now” page, its near the bottom of the long comment that is the 2nd comment on the page on July 28, 2016 at 4:42 pm, you can see it just after where I said, ps – “my email is” , and _____ dot com (done this way to not have spam robots pick it up those damn spammers…..) Talk soon

        • tarkonis July 30, 2016 at 10:14 am

          Hi Jason,

          That would be amazing thanks. Really need help.

        • Jason July 30, 2016 at 10:47 am

          Hi Dave. I did send an email yesterday, maybe check your spam folder?

          Also double check your post further up this page on “June 22, 2016 at 7:15 am” and make sure that is your correct email address? Let me know. Talk to you soon

  42. Tami July 30, 2016 at 5:04 am Reply

    Thanks Jason!! your story is very similar to mine , I received Lisa s e-mail will be in contact.

    Best Always

    Tami

  43. Debbie August 1, 2016 at 9:19 am Reply

    Has anyone ever tried a hyperbaric O2 chamber to help heal? My friend is going to use one because radiation therapy destroyed collagen in his jawbone. Was wondering if it might help “floxies”.

    • DM August 1, 2016 at 7:26 pm Reply

      I’ve been floxed for over a year. I still experience terrible insomnia and I’m also unable to taste foods. I eat, yet food does not have any real distinct flavor. I have a terrible lingering taste in my mouth daily, for over a year! Has anyone else experienced this?? I want to enjoy eating again so much. Going through this for so long, hurts me mentally. Please, if someone can give advice, I’d appreciate it. Also, if you can advise me on the insomnia, I’d appreciate that as well.

      • Ruth Young August 15, 2016 at 2:20 pm Reply

        Hi DM!
        Sorry to just get to answering you now.

        I had taste disruption too, but I was lucky. Food tasted really, really good to me. It lasted about six months and then went back to normal. So hopefully you will be close to getting back to normal.

        I like L-Theanine for insomnia. I take 200 mg without food. I have also tried tryptophan– but make sure you are in a dark room after you take it. It is a precursor to melatonin but if it is not dark your brain won’t make the melatonin.

        Uridine worked for me when the insomnia was really bad. I took 750 mg with a fish oil capsule when I got that torture insomnia where everything burned and hurt every time I even relaxed and it worked almost every time. It has its own receptors in the brain so you can bypass the GABA receptors that are damaged.

        It only worked for me when I took it after that torture insomnia started and I was suffering intensely already. If I tried to head off the suffering with it it did not work. Timing of it was critical.

        Save uridine for when you absolutely are about to crawl out of your own skin and every time you try to relax you burn and hurt and you know there is no way in God’s green earth you are going to sleep at all — take it exactly then. Because when I took it then I would fall asleep within thirty minutes. It was a miracle. But if I timed it wrong or tried to take it before my relapse was in full blown torture mode it didn’t work as well.
        Ruth

  44. Shell August 4, 2016 at 3:29 pm Reply

    Ruth, Jason or anyone that can help… I was floxed back in May and my neuropathy is getting worse. Mainly, SUPER cold hands and feet, numbness and tingling. I saw you mention MitoQ could make things worse – depending on the CYP450 pathway? Is there a certain test I can have done for that and what should the test results be? I purchased some MitoQ but am reluctant to try it if it would make things worse. Trying to figure out how to tell if it would make things worse? I feel like I have been doing everything in the book for floxies- IV infusions, bone broth, magnesium, acupuncture, organic foods, magnesium oil, R lipoic, pro-biotics, b-12 supplements… lots of supplements..etc. It’s very discouraging to not see improvement and have more/worsening symptoms all the time. I am waiting on blood work to check my thyroid and just began a month long collection (spit samples) for hormone testing. Do you know of any floxie stories that had bad neuropathy issues like mine and got better? Seems like I see more successful recovery stories from men vs women so I am curious how hormones might play a role in that…I also have super dry eyes all the time now- any suggestions for that? I am trying to read through stories on the site, but I think I am still in a difficult mental state reading about the horrible things happening. I dont have any family that lives in my state and my husband travels for work all the time so I am trying my best to stay positive without much of a support system…

    • Ruth Young August 5, 2016 at 5:17 am Reply

      Shell,
      Your doctor can do tests to check for liver function. I would also check check kidney function. I had those tests a couple of times after getting floxed. I think it is a good idea to keep tabs on our major organ function– doctors are not quite entirely useless in that they can at least tell us that our kidneys and livers are working well enough to process the supplements we want to take.

      There is no clinical evidence MitoQ helps neuropathy. It is great for cardiac function, but if that is not an issue you may as well skip it. If it makes you at all nervous to take any supplement don’t take it. Our nervous systems are way sensitive to stress and if you believe in any way something could make you worse it will because it will increase your anxiety. If you ever do decide to take the MitoQ avoid grapefruit. There is no study linking actual grapefruit and MitoQ but MitoQ requires the same pathway that grapefruit can interfere with so to me it seems a no brainier to err on the side of caution.

      Frequency specific microcurrent does have clinical research showing it can help with neuropathy. I would look into that and find a practitioner near you. It is FDA approved for treating chronic pain. It increases ATP production by 500%. The practitioner I see for it has told me anecdotal stories of patients seeing diabetic neuropathy resolving within ten visits. Results not typical, but it could be worth a try.

      Magnesium resolved my early temperature related neuropathy. Assuming your kidneys are healthy push magnesium hard. The daily safe upper limit is a gram a day. Spread it out through the day. The late Dr. Jay Cohen, MD says in his latest book that he had debilitating neuropathy that he cured through high levels of magnesium supplementation. Make sure to take a good type: glycinate, taurate, threonate, malate. Those are all good. Avoid magnesium oxide.

      I have read some stories where very painful neuropathy resolved. One comes to mind of a woman who had terrible trigeminal neuralgia and it completely went away. So don’t give up hope.

      Another thing Floxies are trying is colostrum. I think the best comes from Sovereign Laboratories. Someone else in this site was posting all over about how colostrum was her magic bullet. It helps to seal leaky gut. Maybe you aren’t benefitting from nutrition as you should. Neuropathy can be simply from deficiencies. FQ’s cause deficiencies and they are not easy to correct when your gut is not healthy. Probiotics into a leaky gut can actually do more harm than good. You do not have to be experiencing diarrhea to have leaky gut. Colostrum is safe so long as you are not lactose intolerant. Sovereign Labs sends a bunch of info about it with your order. If you don’t get results take more of it. Avoid gluten and it will work even better.

      I also take a micronized purple rice supplement. It is just food but milled really small so it can get into even damaged cells. It lowered my blood pressure and blood sugar numbers within about three weeks. So it really does something. It is another thing you could look into to help nourish and support your body’s natural ability to heal. Generally there are no side effects except that some people in very poor health get a Herx reaction from it– it detoxes them too much too fast. If you try it start very slowly. I just put a tiny bit in my water bottle and shake it up when I take a drink. I buy it from Kare Possick (727) 798-8764. Others are selling it on FB too– not hard to find. That is where I found her. She had posted an advertisement, but the client touting the rice’s healing benefits sounded like a Floxie to me– health problems with a mysterious onset lasting more than six months but after six months taking the rice they were a lot better.

      It seemed to help heal my nervous system too– felt like I got a few more GABA receptors back. I started to get really really normal windows after starting the rice. There are testimonials saying it helps with neuropathy but no research I could find. I get a free bottle if you use my name but you could also use Lisa’s name and this website and have them send her a free bottle. It is good stuff– just food. I get the powder not the pills. If you are not in the US it is still an option but you will need to use a different company to ship it to you and that adds to the cost.

      So those are some things to try that Floxies are currently trying. Some of my floxed friends have tried all those things– with mixed results. Sometimes as a treatment stimulates more healing or detoxing you feel worse for awhile. It is quite normal to get worse before you get better so do not lose hope.

      One friend got a lot worse after trying FSM, another is seeing huge improvements but feels lousy for two weeks after every session before starting to feel better than before. Quite often healing is like two steps forward one step back and it is frustrating, I know.

      I have not heard any reports of bad effects from the colostrum. Since I started it I have not been sick once and I was sick constantly prior to taking it.

      It is my thought that much more of floxing symptoms are due to autonomic nervous system imbalance than anyone realizes. I recently took a class to renew my physical therapy license that was all about the role of the parasympathetic nervous system in controlling chronic pain. Even if you seem to just have neuropathy and not psychological issues like anxiety, depression or insomnia, treat it like you do. Meditate, do deep breathing, focus on gratitude– do anything that helps you relax and feel calm and well. Assume that the instructor in that class is right and that they key to your neuropathy may lie in stimulating better function of your parasympathetic nervous system. (She told me about FSM because it is shown to increase parasympathetic nervous system activation.)

      If she and I are wrong all that happens is you learn to deal with stress better and feel more relaxed. You have nothing to lose by incorporating the things people do to balance their autonomic nervous systems. Read up on ways to increase vagal nerve tone. You may find some useful tips there. None of this will work overnight, but with time, who knows?

      You have plenty of reason to hope for a good outcome!

      Another thought just came to me– if you notice your neuropathy is just in the last two fingers of your hands, the pinky and the next finger over– the real issue may be a trapped nerve in your shoulder. Floxing makes our muscles so tight. I sometimes get tingling or numbness in those fingers and after moving and stretching my shoulders it goes away. I keep feeling like my upper trapezius muscles are wanting to tighten up. That is part of that whole nervous system imbalance thing.

      One thing that dramatically decreased my incidence of tingling in my fingers during the night was getting a new pillow. I knew a PT years ago who always started with that– she would ask patients what their pillow was like. If it is too flat you could by lying in a way that causes impingement in your shoulder. This is basic stuff but it pays to cover these bases, because if you are having nerve issues those nerves are going to be even more sensitive to impingement. The ulnar nerve runs through your shoulder.

      If it is your other fingers taking a look at the position of your wrists when you sleep could be helpful. I was sleeping with my wrist bent over several years ago and started to get carpal tunnel type symptoms that went away when I focused on avoiding doing that– I think it was a stress thing that I was sleeping with my wrist in that weird position.

      Another thing I just remembered is a floxed friend whose cholesterol was so low, even his bad cholesterol, that lack of fat in his body was a cause of neuropathy for him because his body had nothing to make myelin from. His neuropathy is improving now. We’re calling it the “bacon cure.” Get your cholesterol checked before you decide greasy burgers are the cure for you, but in the meantime push the healthy fats so your nerves have something to make myelin from.

      If they say your cholesterol is too high do not by any means take a statin. Our bodies actually need cholesterol and statins are nearly as dangerous as quinolones, according to Angela Stanton PhD. She’s a scientist who sometimes contributes to this site. I trust her thoughts more than doctors looking at a single number and pushing a drug because of it. So unless your cholesterol is crazy high, like around 300, you would just be looking for that you have enough. Apparently FQ’s, especially when combined with steroids, can deplete our bodies of cholesterol.

      So that gives you a few things to try and some avenues to look into. It is all so hit and miss sometimes and it feels like navigating a mine field. I hate the doctors and drug companies that put us in this position. But people do heal 100% from floxing and there is no reason to assume you will not be one of them.

      Good luck!
      Ruth

    • Ryan L August 6, 2016 at 11:42 am Reply

      Shell,

      Getting the 23andme test done and then uploading the raw data to a site like nutrahacker will let you know how your cyp pathways and other genes are working. I’d do this before taking MitoQ. It takes 6-8 weeks to get the 23andme results. The nutrahacker results takes minutes to receive. Just make sure you get the complete mutation report which will show you where all the genetic/pathway disorders are and what is recommended for each issue. Please note that just because the test result says you have a mutation, it does not mean that mutation is active. It would also be wise to review the results with a naturalpathic doctor or a functional medicine doctor with training in genetics.

      I made the mistake of taking MitoQ before getting my genes tested. I felt horrible for 24 hours afterwards (swollen feet, racing heart, confusion, anxiety). After I got the results translated by nutrahacker, I understood why I had that problem (CYP issues).

      For your eyes, use preservative free eye drops until the waterworks kick back in. I read that in one of the recovery stories by a woman on this site….can’t remember which story.

      Hope this helps.

  45. kris t August 7, 2016 at 10:02 am Reply

    Hey Ruth, I have not been on your site in awhile. Have been suffering for over a year with the back pain and now I feel I need to get on an anti-depressant of some sort. I know you had success with Idebenone for that but it made me feel weird. I started Celexa but I think that is the one that Tarkonis said was a flouroquine based although I cannot find anything on the internet to support this fact. The acupuncturist is not helping my depression. I cannot work because I cannot lift anything heavy. The brain fog comes and goes from the whole Cipro ordeal from last year. I know someone suggested Cymbalta but that really made me jittery like I was on speed and then had a small rash on my face the next day. KrisT

    • Ruth Young August 11, 2016 at 2:37 pm Reply

      Hi Kris,
      Sorry it took me awhile to get back to you. I have been busy cleaning my house and working fireworks shows.

      I’m glad you got off Cymbalta. The withdrawal from that one is easily as bad as the benzodiazepines. I do not know if the one you are on is any safer. I think the older drugs sometimes are somewhat safer because we at least know what they do, whereas newer drugs you are basically part of the clinical trial of that drug– they have no idea if they are safe to take long term or not. You can look up any medication online and find out what other patients are saying about it. Wish I had done that with the Cipro…

      If Idebenone did not help your depression then I am thinking your depression is unlikely to be the result of low serotonin. There is research coming out today showing that that model of depression is flawed and that a serotonin imbalance is at the root of depression for only a small percentage of patients.

      I have actually stopped the Idebenone temporarily and have had no return of depression. What I have not stopped is focusing on functional minerals. I think my depression over the years was only due in a very small way to serotonin imbalance. It probably was due to severe functional mineral deficiencies. When I was young I discovered that taking a calcium pill during those times that the world was closing in on me helped. As I finally am getting to the point that my levels of calcium, magnesium and zinc are where they should be in my body I am feeling quite a lot different– much much better even than I felt in my twenties. I think I have a mild predisposition to depression, but mainly I had a severe and critical lack of functional minerals. I barely ate back then and figured thin meant healthy. Definitely not true.

      So it is possible you have functional mineral deficiencies– FQ’s are powerful chelators.

      It is also possible that the cause is hormonal, or from loss of GABA receptors or maybe from mercury toxicity from amalgam fillings. The antidepressant will not treat any of those things. And it will damage your brain. They all do, through downgrading of receptors. The damage is reversible. But no antidepressant cures anything. Most of them are not as hard to get off as the Benzos, but even Prozac has a withdrawal period. For me it was nearly a month of pretty severe depression every time I stopped it. That means it downgraded my receptors for serotonin.

      The only thing that seems to have given lasting real relief for my depression is to not be deficient in calcium, magnesium and zinc anymore. I will go back on the Idebenone during the school year, because the serotonin boost does seem to help me and it will probably be helpful to me in dealing with the stress of teaching. But even if I did not go back to it I would be ok– better than I have ever been. I found the real cause, the main cause.

      I don’t think you have found that, beyond being able to guess that it is probably not related to serotonin as the serotonin boost from Idebenone was unpleasant for you. If I were you I would supplement functional minerals, so long as that is safe for you to do (taking kidney health into account) and try meditation and yoga as they are shown to increase GABA. If you have amalgam fillings I would look into whether it could be an issue of Mercury toxicity. For myself, I would not take an antidepressant. They cure nothing and come with significant risks.

      There is a good program for core and back strengthening called “Forfity Your Frame.” I met the author. I think she could really help you. You can find it online. Another thing to try is called The Miracle Ball Method. You can look that up online. It is not expensive. A lot of people swear by it. I found out about it from a very good physical therapist when I used to fill I at her clinic.

      Good luck! I’m sure as you discover the reasons for both your back pain and depression you will find the cures you are looking for.
      Ruth

      • Jason August 12, 2016 at 11:52 am Reply

        Just a fast note that Depression is a very very common symptom of Mercury Toxicity as I mentioned somewhere above before, there are many ways this manifests, derangement of Minerals is one of them, and it is particularly disruptive of Magnesium (needed for 300+ things in the body) and Zinc (needed for 900+ things in the body) but many others, and then there is the many other ways like causing Thyroid dysfunction, Adrenal dysfunction, Gut issues, etc etc.

        Note also there are at least 4 VERY common sources of Mercury exposure where people who are susceptible end up accumulating too much in their body (like many other toxins, it gets “stored”, and then can be mobilzed at times causing much havoc): Amalgam, big Fish like Tuna, Vaccines and right in the Womb and through Breast Milk (even the lying #(*^*^$() ADA and other liars now admit this link because studies prove it, and history shows the first born gets the biggest dose).

        • Ruth Young August 16, 2016 at 6:14 am

          Jason,
          Kris is very depressed. Why would you even put this here? It comes across as fear mongering. It is negative and scary and flared my anxiety a little bit and I’m about 99% well.

          Why not just tell Kris, “Ruth is right that mercury can cause depression, and taking care of that issue is definitely preferable to another of Big Pharma’s poison. There are ways to minimize your exposure, such as avoiding tuna and certain other types of fish known to be high in it. Vaccines contain it so you don’t want to go for that annual flu shot this year (they are bad and probably ineffective anyway.) There are safe ways to deal with exposure to mercury but not everyone knows them, so proceed carefully. I can help you with that if you wish.”

          Wouldn’t that have achieved the same result without scaring her? Telling people something they can do, something small even like avoiding tuna, makes them feel like they have some control. That is a good thing. Telling them that there are ways to deal with the problem if it turns out to be the root issue is a hopeful response. Just listing the various ways we get exposed including right down to in the womb is just way too negative for a floxed, depressed brain to process. You need to stop this type of post. It is hurtful. Yes, knowledge is power, but a hurting sick person does not need to know everything you know to profit from your knowledge.

          Saying “Looking for the real cause of this symptom is better than taking a drug with more side effects. Maybe it is this (fill in the blank) and you might want to look into it,” is plenty.

          Make the world seem too scary right off the bat like that and people will tune you out or get mad. These people are already terrified. They need things to seem a little less scary and that they have a little more control over their symptoms– push them in the opposite direction and you might be pushing them right toward suicide.

          Quite a few of the people I know who help Floxies have lost a floxed friend to suicide. It is way more common then you realize. When trying to help Floxies the most important thing is to make sure they stick around to benefit from that help, because absolutely any of us can see a floxed friend we care about decide to give it up– which would be a terrible tragedy considering most Floxies eventually get better– if they can hang on long enough to see that day. Every time you post something that raises my anxiety that tiny bit I worry about the person a couple years behind me inn healing and what it is doing to them and what they might do in response to that overload of scary information.
          Ruth

  46. Shell August 8, 2016 at 12:06 pm Reply

    Ruth,
    Thank you so much for the quick response. I will definitely look into Frequency specific microcurrent. You mentioned taking up to a gram of magnesium a day. I am going to see what my test results say on the kidneys first but I couldn’t find much research on the safety of taking that much. I tried taking the L threonate kind but would wake with terrible night sweats, chest pains and weird head pains so I am not sure that I can handle that kind. I have magnesium malate and magnesium citrate so I probably stay with those. I am all for trying something that will heal/help my condition. Unfortunately, I felt that way about Cipro to heal my ecoli infection in my adenoids. Which not only did I get floxed but it didn’t even cure the ecoli infection. The doctors said there are no more options to cure the Ecoli so I have been doing high dose vitamin C to try and help that. I try not to be hard on myself, but it is difficult knowing I could’ve avoided so much suffering if I didn’t take the Cipro or stopped it sooner. I am suffering from chest pains, muscle aches/weakness, memory issues, tendon pain as weird stomach pains, and lots of stress ,anxiety, and depression along with the neuropathy issues. I find myself waking up at 3 or 4 am flooded with anxiety and body aches. I have been listening to meditation music and I think need to learn some meditation techniques. My muscles are very tight especially around my shoulders and neck I def feel there is a system imbalance going on. I have had issues in the past with bending my wrists when I sleep. I have a very small frame and have been told more likely for nerves to get trapped or pinches bc I have small wrists/ankles etc. Any suggestions or brands of pillows I should look into? My acupuncturist suggested cupping – any thoughts on that?

    Interesting about the cholesterol. I was on Cipro then Bactrim then steroids so who knows what that combo did to me. I don’t eat much meat (except for wild caught tuna and salmon in sushi) as I am trying to avoid antibiotics and corn fed products. I have lost almost 20lbs since floxed in May, I fear mostly muscle mass is deteriorating. I am just over 100lbs now so I will have to see if I can get my cholesterol tested. I try to walk to get exercise but it aggravates my joints. Etc.
    I will have to look into the colostrum. I don’t believe I am lactose intolerant but was tested a while back and told I had strong allergy to casein (protein in cows milk). So I typically avoid dairy products – not sure if the casein issue would be an impediment to taking the colostrum or not?

    Ryan L,
    Thank you for that information. I currently don’t have a functional medicine doctor so I will need to find a good one here in Minnesota to help me with these tests. Currently, I am only working with my IV infusions dr. I inquired about the CYP Pathway but she didn’t sound familiar with it. In the past I have been told I have Gilbert’s syndrome ( my liver doesn’t process bilirubin) so I am definitely curious if I have any mutations or issues with MitoQ. I have read that the low level of the bilirubin-processing enzyme that causes Gilbert’s syndrome may also increase the side effects of certain medications, since this enzyme plays a role in helping clear these medications from your body. These medications include:Irinotecan (Camptosar), a cancer chemotherapy drug and Some protease inhibitors used to treat HIV. Also, having certain types of Gilbert’s syndrome may increase your risk of developing gallstones. Interesting that Cipro is used as a chemotherapy drug so I wonder if there is a correlation between having Gilbert’s and taking Cipro. Most people never even know they have Gilberts as it typically presents little to no symptoms, makes me wonder if that could be a trigger for why some have issues with Cipro and others do not.
    I actually took one dose of MitoQ a few weeks back. I had an episode of losing my vision later that day-which was very scary, but I also had little sleep, bad headache, barely anything to eat that day and two beers (was at a neighborhood get together). I don’t recall any other symptoms that day so it’s hard to know if that was related to the MitoQ or the bad headache. Thanks for the tip on the preservative free eye drops I will look into that. It’s so odd for me to wake up every day with severe dry eyes and dry mouth. I had read most eye drops contained some level of fluoride so I have been hesitant to buy any. I hope that you are doing better from being floxed?

    • Ruth Young August 8, 2016 at 3:27 pm Reply

      A gram us a day is the accepted safe upper limit for magnesium per day. Dr Whitcomb felt it would be ok to go higher but I get diarrhea if I do, so usually I stay just under the gram a day. Magnesium threonate is paired with a stimulating metabolite. I used to have trouble tolerating it too. Now I could take it and take a nap right after if I wanted to, so maybe it is something you could try later on after your nervous system heals some more.

    • Ruth Young August 8, 2016 at 3:29 pm Reply

      Absolutely do not take the colostrum. You are allergic to one of the ingredients. The last thing you need right now is anaphylaxis.

    • Jason August 12, 2016 at 12:37 pm Reply

      Shell not sure if you seen some of my notes above about how ALA and Glutathione (esp in IV) can actually cause Neuropathy for some people (even without Amalgam) and/or make it worse (and cause other issues too).

      There are many many do’s and don’t’s when it comes to supplements AND even FOOD, which all have the power to heal and harm, and unfortunately again even many Doctor’s are not aware of all of them please be careful.

  47. Vee August 12, 2016 at 8:08 pm Reply

    Is there anything that helps tinnitus? I am having horrible tinnitus 24/7.

  48. Vee August 12, 2016 at 8:17 pm Reply

    http://www.whatisdryeye.com/10-best-preservative-free-artificial-tears/
    I need to buy some too. Leaning toward the Visine one…

  49. kris t August 14, 2016 at 6:57 am Reply

    Ruth, thanks for your comment on the depression. My back pain is just So bad and that is why I am so depressed, I think. Plus if I take Advil, the brain fog comes back and the back pain seems worse the day after I take a NSAID. Not sure why. I can’t believe that since I have been off Cipro for almost a year, that I still cannot take these. I will try the minerals, I have been off calcium for awhile so maybe that is where I will start. I tried Celexa for depression last week, only 5 mg and had a terrible reaction! It is supposed to be the one with the least side effects. I have tried everything for the back pain, chiropractors, massage, yoga, PT and Tai Chi. I have good days, but mostly bad. If I am walking or moving around I am OK> I also tried acupuncture which helps for that day, but then at night, in pain again. I use ice constantly. I did try ultrasound and that did nothing. Its mainly in my muscles. Kris

    • Ruth Young August 15, 2016 at 12:23 pm Reply

      Kris,
      Don’t take too much calcium. If you get too much your body does not put it into your bones, it puts it in your heart, according to Dr. Whitcomb. He says we should not take calcium at all, but since I got floxed, more so in the initial stages, I absolutely needed to supplement it. Our bodies seem to just get stripped of everything, not just magnesium. I think I did read FQ’s definitely chelate zinc and the product label does say not to take calcium supplements with them so my guess is they mess with calcium as well. They seem to bind most strongly to magnesium. I would try supplementing calcium (just a little), zinc (safe upper limit is 24 mg per day) and magnesium (not more than a gram a day, much less if you are not used to it.) The other things shown to help are vitamin C and E.

      We cannot take NSAID’s because once GABA receptors are damaged by an FQ they are susceptible to damage by the NSAID. FQ’s have a small ability to downgrade GABA receptors all by themselves. Some people are more vulnerable to this than others but most people will not experience loss of GABA receptors from the FQ alone, or not a noticeable amount of damage.

      However, if those same receptors are subsequently exposed to an NSAID the chances of GABA receptor damage increases 20,000 times. Every time you expose your post flox GABA receptors to an NSAID you do a little more damage to them. Damage to GABA receptors can show up as tight muscles that cramp and cramp and can’t relax. Maybe if you just stopped taking NSAID’s altogether your back pain would get significantly better.

      Can you ever take an NSAID again? Eventually. When you are completely healed. But I would not risk one at less than four years out. I think there was at least a decade between my first floxing and my taking an NSAID (I never took pills for pain much) and I had no issues. So your GABA receptors absolutely do heal and get all the way back to normal. But when you look at 100% healing stories it is very common for that time line to be around the three or four year mark, so that is why I would say your body probably needs at least that much time to be completely safe. There are also other reasons to avoid NSAID’s that apply to everyone, not just Floxies. There is an article by Lisa about that on this site.

      Another possibility to treat the depression is to try a company called Neuorscience. Find a doctor willing to give you their testing for neurotransmitter levels. Then they have supplements to support what you are actually low on. It is not a huge success rate at this point, unfortunately, but when it works it really works. Dr Whitcomb makes use of it for patients recovering from addiction. They tend to have such low levels of things like dopamine and serotonin that it makes it especially difficult for them to avoid going back to the drugs. Nothing in life is able to give them pleasure but the drug. But when he gets them tested with Neuroscience and on the recommended supplements they lose all craving for the drug because they are able to feel good again without it. They feel normal again. Isn’t that what Floxies need? To be able to feel normal again?

      Sometimes I wonder if floxed brains are any better off than those of the cocaine or heroin addict. Maybe not. Maybe after all we have been through and the damage done to our brains we are exactly like those addicts– unable to have any pleasure in life because our neurotransmitter levels are bottomed out.

      It does seem to sometimes happen that after a person’s GABA receptors should be mostly restored they still experience severe depression. Is this from loss of GABA receptors or is it from neurotransmitters being similar to those recovering from addiction? It might be the latter. More than one Floxie has said they feel like they have PTSD when it is all over. So you may want to try that testing to get to the root of what it is your brain is actually lacking rather than just throwing serotonin at it, which will probably not work. Just a thought.

      If you do look into whether it could be Mercury toxicity from amalgams that is hindering your recovery proceed with extreme caution. You cannot just go to any dentist and have him yank out those fillings or you will find yourself in a world of hurt. Getting them out is a risky procedure and you need to find a bio dentist or someone who does the Huggins protocol possibly. I do not know a lot about it except that I know that people get Mercury poisoned when they simply have their dentist start removing those things. There is greater exposure as it is removed than when it is sitting in your teeth undisturbed.

      Also, if your nervous system is still damaged maybe it isn’t the right time to put it through that. I got all the way better with eleven of them still in. Would I like to someday get them out if I can find a way to afford it? Sure, because it would be a good choice for my health so long as I find a dentist who can do it safely. But I would not do it right now, because there is a risk in having them removed and I just went through hell. If I had to go through hell again recovering from Mercury toxicity I’m not sure I could handle it emotionally. I need to wait until I feel ready to deal with the consequences if the very real risks involved with removing them happen to affect me.

      So I don’t like when people keep harping on Mercury and saying you can’t get better if you have any amalgam fillings. For one thing, it’s not true. People with those fillings heal all the time. And for another thing, I don’t care what protocol you use or how good the dentist, removing them is dangerous. Unless you are shown proof that you cannot heal beyond where you are or that your vital organs are being severely compromised, I would say to wait and proceed cautiously where those fillings are concerned if you have any of them.

      I hope you try “Fortify Your Frame” and the “Miracle Ball Method”because I think they will help. Not in one day, but over time. Neither is very expensive and you could put in around a half an hour a day between the two and see results if you do it every day. The woman who created “Fortify Your Frame” had video of ninety plus year olds doing her program and it was amazing what they could do– and how good they reported feeling. It absolutely safely strengthens the core. She avoids all the typical exercises that are actually dangerous for the elderly– there is absolutely no spinal flexion in the program because that can cause fractures. But the exercises she designed get real life functional results, decreasing pain and increasing mobility.
      Ruth

      • Jason August 15, 2016 at 7:52 pm Reply

        I don’t know who told you people can’t heal with Amalgams in their mouth, but it certainty wasn’t me so I am just clarifying that because yeah, you and many many others are proof people can and do heal with them still there.

        However could they slow healing down for someone? Quite probably yes. They leak every single day, and the amounts are much bigger than the lying ADA would try to convince people of, I’ve seen somewhere around 50 studies on this now. There is definitely some risk of some exposure during removal, however when done by a properly trained Holistic Dentist who “chunks” them out (not drills them), gives you an oxygen mask, Dental Dam, has strong suction hose close to mouth to draw away vapours etc etc the risk is much less and the amount of exposure is less when done properly. Most people see improvement in their Health once they are removed (there is even a study on that).

        This was done live on Dr. Oz show https://www.youtube.com/watch?v=Zd7c_3-OWq8

        • Jason August 15, 2016 at 7:53 pm

  50. Ruth Young August 15, 2016 at 2:32 pm Reply

    Michelle,
    You can make your own topical magnesium spray by dissolving some Epsom salts in water in a spray bottle. I also buy Ancient Minerals brand online. Their lotion is especially nice. Expensive though. The homemade Epsom salt variety is a lot cheaper.

    Sounds like you have had the typical Floxie experience with modern medicine. Don’t lose hope though– there are good docs who believe us and even know how to treat us– to a certain point. There is no quick cure.

    I bought the ebook offered on this site– the one by Josh Tucker and Kerri Knox. That has a lot of good info. I found more on my own but it was a good place to start. You do not have to take every supplement they mention and do everything they suggest to heal! It has a lot of ideas and at least explains what happens when we get floxed– some possible explanations anyway.

    Keep remembering that most people do get better. I lost a bunch of weight too and had all kind of physical and mental issues post flox, but I got better. I’m no spring chicken, very near to menopause, was extremely magnesium deficient before taking the Cipro– if I can heal anybody can. You’ll get there. It’s a rough road but you will make it.
    Ruth

    • DM August 23, 2016 at 4:29 am Reply

      I need help, guidance, someone to turn to. I’ve had symptoms for over a year and nothing has changed. I no longer sweat, cry, no urge to urinate (Sorry TMI) I have to remind myself to go to the bathroom every day! Its been over a year! My insomnia has plagued me. I’ve seen a neurologist, urologist and general practioner and all my tests came back normal so they just prescribe anti depressants so I refuse to go back. My appetite has never been the same no matter what I do. I at least get hungry now (al little bit) but when I eat, I never enjoy it anymore. Lastly, my libido has been shot to hell as well. All of this from 500mg 2x day for 5 days one year ago..Please, please, someone tell me what can I do?? I’m afraid of flurodinated water. How can I avoid it? I simply can’t. I never get an episode whenever I eat anything. I have zero pain. I don’t have any physical ailments, no tendinitis. I can wak. No tingling. Here are my symptoms again:

      No sweating, no crying, no urge to urinate
      Insomnia, no appetite, depression

      I can’t discuss this any longer with friends or family because they think I’m crazy after all this time. Please, please someone, what should I do?? I need help!

      DM

      • Ruth Young August 23, 2016 at 4:53 am Reply

        DM,
        Lisa posted about inability to sweat and I don’t think it came back for her until after she posted her initial healing story. It might have been around the three year mark that it came back. Doctors who know about FQ toxicity usually say one year out is nothing. I think everything you are suffering from now will reverse with time, but one year is simply not enough time. Most people get better within 18-36 months. I’m still under that 36 month mark myself, so ok it’s figure any time I get a downturn or a return of some annoying symptom that it just has not been enough time yet. Helps me not to panic.

        You could look up ways to increase vagal nerve tone and try some of those ideas in the meantime. One vagal nerve hack is exposure to cold water. I’ve been swimming in Lake Michigan a lot and have noticed that I feel deeply relaxed afterwards. The vagal nerve is a major part of our parasympathetic nervous system. The rest and digest part. Anything that stimulates it to function better is going to help not only with resting and digesting but any other autonomic function controlled by that branch of our ANS. If you were about to be eaten by a bear your body would not worry about producing sweat or tears or whether you had to pee. I had a similar issue early on but it was with breathing. It would feel like I was forgetting to breathe or that if I was walking fast my breath would not quicken as it should have in response to that exertion. It felt like instead of being an unconscious process I was thinking about breathing a lot. Very weird and scary, but it went back to normal. I think all your issues will too. In the meantime, if you live near a big icy cold body of water it might be a good time to go for a swim.
        Ruth

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