Lisa’s Recovery Story – Cipro Toxicity

Lisa for Floxiehope

*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments. 

Lisa’s Story 

In the middle of November, 2011, I took Cipro to treat a urinary tract infection.  I took 2 pills (500 mg each, I believe) a day for three days.  I didn’t feel like the infection was gone, so I went back to the doctor and requested more antibiotics.  He gave me macrobid and the infection subsided within a couple of days.  Life went on as normal for the next couple of weeks, until December 2, 2011, at which time I got my period and started taking ibuprofen to help me to deal with the cramps.

Before I continue with my story, I would like to note that I had taken Cipro to treat a urinary tract infection approximately a year earlier.  I had no notable side effects at that time.  Though, looking back on things, I did develop an eyelid twitch at that time and some strange stomach cramping that came and went started then.  I didn’t think anything of the eyelid twitching or the stomach cramps.  I certainly didn’t think that they were tied to the Cipro.  I took ibuprofen regularly after taking Cipro with no adverse effects.

On December 2, 2011 my legs started to itch.  On December 4th I broke out in hives all over my body.  I went to the doctor and was told to take Benadryl.  I took more Benadryl than the box recommends and my hives got progressively worse.  On December 5th my feet and hands swelled to the point that I couldn’t use them anymore.  It was painful to walk, or even to just stand.  I went back to the doctor and was put on prednisone.  The prednisone suppressed the swelling and calmed the hives a bit.  On December 7th my left leg went weak.  For the next few weeks the following symptoms got worse and worse:

  1.  Weakness in my legs.  I could barely walk.  The steps that I could take took a tremendous amount of effort and energy.  I couldn’t stand for more than a minute.  I had to drag a chair into the kitchen in order to cook rice because I couldn’t stand to stir the pot.
  2. Tightness of the tendons in my legs.  I had inflammation, and possibly tears, in most of the tendons in my legs and feet.  My hips, knees and ankles, to simplify things, didn’t work right.
  3. Loss of use of muscles / loss of strength.  My muscles, especially the muscles in my legs, wouldn’t move like they used to.  All of my movements were slow and deliberate.
  4. Brain fog.  I couldn’t think straight.  I felt stupid.  I couldn’t concentrate.  It was a struggle to do my job.
  5. Loss of memory.  My short-term memory decreased significantly.
  6. Loss of peripheral vision.  Large, black floaters entered my peripheral vision.
  7. Loss of appetite and weight.
  8. Loss of flexibility.  I went from being able to do yoga several times a week to being unable to sit with my legs curled up under me.
  9. Loss of balance.
  10. Severe loss of energy.  I felt like the plug had been pulled from my energy source.  I wasn’t necessarily sleepy, I was just drained.  The feeling was similar to the feeling that I have when I have a cold – weak and like I just want to collapse.  Just slight exertion would drain me of my energy.  Walking would make me tired for a whole day afterward.
  11. Dry mouth.
  12. Anxiety.  I had an ongoing anxiety attack for the first couple of months after being floxed.
  13. Pain in my feet.  I felt like I was walking on hot coals with every step I took.
  14. Loss of reading comprehension.  I would read a page and have no idea what I had just read.
  15. Loss of social skills / connectedness.  I felt anxious and scared in social situations.  I lost confidence in both my physical and mental abilities.  I felt very alone despite having a wonderfully supportive family.

I felt as if I had aged 20 years in just a week or two.  I couldn’t move, think or eat.  My body and mind were falling apart and I had no idea why.  I didn’t think that the sudden decline in my health had anything to do with the Cipro.  After all, I had stopped taking it a couple of weeks before my body started to fall apart.  I thought that I had an autoimmune disease.  My symptoms seemed similar to those of rheumatoid arthritis.  I went back to the doctor and they ran every test imaginable on me.  I was relieved to find out that I didn’t have an autoimmune disease, but it was somewhat frustrating to hear that all of the tests were showing that I was normal and healthy when, clearly, I was neither normal nor healthy.  The doctors did not provide me with a diagnosis or a prognosis.  Though I was desperately seeking a diagnosis and prognosis, I am thankful, in retrospect, that they didn’t misdiagnose me.  If I had been mistakenly diagnosed as having an autoimmune disease, I may have treated it with pharmaceuticals that could have made me feel even worse.

I was desperate for some treatment, something to stop the downward spiral that my body, mind and spirit were in.  The traditional medical doctors I saw provided no relief, treatment or healing.  I started seeing an acupuncturist.  He was able to stabilize my condition, calm my nerves and keep me from spiraling physically or mentally.  After a few weeks feeling stable physically, I started to have days where I felt better than I had the day before.  Mentally, I kept going downhill for a while, but, eventually my mental health stabilized and started to improve as well.

Eventually, with the help of my acupuncturist, I connected my symptoms to Cipro.  Once the connection was made, I realized that all of my symptoms were consistent with those of others who have been poisoned by Cipro and other fluoroquinolone antibiotics.  I entered the scary world of being a floxie.

For about a year, I considered myself to be sick.  Though the symptoms listed above were improving, slowly but steadily, I was still sick, and a long ways from the healthy, active, energetic woman that I was before I took Cipro.  After a year, I started to put “sick” in the past tense.  Though I wasn’t back to the level of health that I was prior to being floxed, I was getting better and, as far as most people could tell, I was well.

Following is a list of things that I did to help me to get well, to heal.  I am not a doctor.  This is a description of my experience and what helped me.  I hope that what helped me helps you.  Everyone is different though.  What helped me may not help you.  One thing that I know helped me and that I know will help you is hope.  I hope that the fact that I have largely recovered helps you to have hope.  I hope that the other steps that I took to get well also help you to gain hope and healing.

Please feel free to contact me with any questions, comments or concerns, or to share your story.

Lisa’s Healing Tips

One of the many frustrating things about fluoroquinolne toxicity is that everyone’s body is different.  Everyone’s symptoms are different and everyone’s body reacts differently to treatments.  Following is a list of things that helped me.  I hope that what helped me will help you, but it may not.  I am including other people’s healing tips as well, in case their tips can help.  Of course, please read these tips with the typical disclaimer in mind – I am not a doctor or medical professional of any kind.  I am sharing my experience with the hope that others may find it to be useful.  Please ask your doctor, or other trusted medical professional, for medical advice, and before taking any of my advice.

In no particular order, here are the things that helped me to heal.

  1. Time.  With time, I have healed.  Each day is better than the day before.  Time will heal your wounds too.  Eventually, you will get better.  The poisonous reaction affecting every part of your body will eventually stop and you will begin to recover.  I have heard several stories of fellow floxies having a timeline similar to mine – slow, steady recovery for about 2 years.  Other people take more, or less, time to recover.  Time does help though, and most people do end up getting better as time goes on.  Very few people get worse and worse indefinitely.  There may be bumps in the road, but time is your friend.  Time will help you to return to a state of health.

Try to be patient with yourself.  It will take time for your body and mind to heal.  I see this whole ordeal of getting sick as a lesson in patience (and compassion, gratitude and health).  Pushing yourself too hard too soon can lead to pain, frustration and injury.  Try to give yourself the time necessary to heal, and, with time, your body and mind will, indeed, heal.

2.  Avoid NSAIDs and steroids like the plague.  Both NSAIDs and steroids are contraindicated with fluoroquinolone toxicity.  They will make your reactions and symptoms worse.  There are some published medical articles on PubMed about the contraindication between NSAIDs/steroids and fluoroquinolones.  Searching at the library or on Google will give you more detailed information than I can provide.  Anecdotally, I know that my reaction was triggered by taking NSAIDs (ibuprofen that I took to help me to deal with menstrual cramps) and it was exacerbated by taking prednisone (a steroid).  Please note that I did NOT take NSAIDs or steroids at the same time as Cipro.  I took ibuprofen 2 weeks after I finished taking Cipro and it triggered my toxic reaction and I took prednisone 3 weeks after I had finished taking Cipro, after my reaction had started.  I will never take another NSAID or steroid again.

Unfortunately, NSAIDs and steroids are the drugs that are the most commonly prescribed drugs used to “treat” fluoroquinolone toxicity.  This is because the combination of NSAIDs/steroids and fluoroquinolones does not always cause a toxic reaction, the toxic reaction of combining fluoroquinolones and NSAIDs/steroids can occur even when the drugs are taken weeks or months apart, doctors and other medical professionals don’t acknowledge fluoroquinolone toxicity and so they don’t look for the contraindications and because many of the symptoms of fluoroquinolone toxicity are treated with NSAIDs and steroids.  The pain killing qualities of NSAIDs and the swelling reduction qualities of steroids make them the drugs of choice for treating many of the symptoms of fluoroquinolone toxicity.  Don’t take them though!  In my nonmedical opinion, I suggest taking non-NSAID over-the-counter pain medicine like acetaminophen (Tylenol) for pain (or marijuana – which is probably better for your liver), and antihistamines for the swelling.

Often, fluoroquinolne toxicity is misdiagnosed as an autoimmune disease.  In particular, it is often misdiagnosed as rheumatoid arthritis.  Many of the drugs that are used to treat rheumatoid arthritis are NSAIDs.  Don’t take them.

3.  Acupuncture.  I credit my acupuncturist with saving my life.  I can only guess how I would have fared without my acupuncturist, but I imagine that I would have ended up in the emergency room, pumped full of steroids and antidepressants, having a massive anxiety attack and unable to walk.  That didn’t happen though and there really isn’t any point in surmising about what could have been.  I do know that acupuncture stopped my downward spiral and got me on the road to recovery.  Both the acupuncture needles and the herbs that he provided gave me immense relief.  I don’t know why or how acupuncture works, but I do know that it worked wonders for me.

4.  Supplements.  I have taken more supplements than I can remember.  90% of them had no noticeable effect on my health.  Here is a list of supplements that I think helped me.

Iron.  I take a low dose iron supplement – only 5 mg. – daily.  The brand of iron supplement that I use is Pur Absorb, but I’m guessing that other low-dose iron supplements will work equally well.  Within just a couple days of starting taking the iron supplement, my energy levels increased dramatically.  I could walk a mile without being exhausted afterward.  In addition to improving my energy level, the iron supplement seems to make my muscles and tendons more supple and malleable.  When my tendons are feeling tight, a dose of iron helps to loosen them up – within just a couple hours.  Too much iron is really bad for you, so please be careful with supplementing it (ask your doctor, yada yada), but it helps me immensely.

Magnesium.  I take 250 mg of chelated magnesium daily.  I don’t necessarily notice that it makes me feel better, but I do notice that I feel worse when I don’t take it.  My muscles twitch if I don’t take my mag.

Zinc.  I take zinc when I get around to it.  I remember feeling mildly better when I started taking it.  It doesn’t seem to affect my health dramatically though.

Chlorophyll.  I take chlorophyll about every other day.  It seems to help with my energy level and mental functioning.

I also take fish oils, resveratrol, a probiotic, a joint supplement, CoEnzyme Q10, vitamin B12, chlorella, glucosamine, brewer’s yeast and some other supplements.  They may help.  I can’t say that I feel a difference using any of them.

5.  Meditate.  Meditating has so many amazing, positive benefits for your brain, your life, your spirit, etc. that I can go on about it ad nauseam.  Meditation helped relieve a lot of the mental symptoms of my fluoroquinolone toxicity.  My anxiety, inability to concentrate, inability to connect with others, depression, loss of reading comprehension, decreased mental acuity, etc. were greatly reduced (or improved) through meditating.  I meditate about 10 minutes each day.  I should meditate more like 20-30 minutes a day.

Meditating helped me to gain compassion for myself and my situation.  It also helped me to let go of the anger that I felt toward the pharmaceutical companies and the medical culture that allows fluoroquinolones to be on the market.  The pharmaceutical companies and the medical culture are both messed up and blame of them is justified, but anger and blame were not serving me mentally, emotionally, spiritually or physically.  I needed to let go of my anger and blame in order to move on with my life.  Meditating helped with that.

I learned to meditate through taking a class called Mindfulness Based Stress Reduction that was offered by my health insurer.  It was an excellent class based on the work of Jon Kabat-Zinn.  Many Buddhism centers offer Mindfulness Based Stress Reduction or Meditation 101 classes.

6.  Get off the internet.  Most of the information available on the internet about fluoroquinolone toxicity is horrifying.  Fluoroquinolone toxicity is horrifying.  It is scary.  It is completely unacknowledged by the medical community – the doctors, nurses, etc. who we go to in order to make sense of things when our body goes hay-wire – so we seek answers on the internet.  Unfortunately, most internet sites devoted to fluoroquinolone toxicity do not provide a balanced picture.  They show the harm and the horror of fluoroquinolone poisoning, but they don’t show the healing and hope that most people eventually experience.  I am writing and distributing this in order to provide the perspective of hope and healing.  Some people are permanently disabled from fluoroquinolones.  My heart goes out to those people and they have every right to scream their story on the internet.  However, their story is not your story.  My story is not your story either.  But if you’re going to look to the internet for a prognosis, it’s better to find a hopeful prognosis than one that is full of doom and gloom.

When I participated in the online forums for Floxies, I noticed that my anxiety levels increased significantly.  Even after I was 90% recovered and I thought I could handle it, my anxiety levels would go up simply by reading about people being floxed.  Inducing anxiety is one of the worst things that someone suffering from fluoroquinolone toxicity should do.  Anxiety makes all symptoms worse.  I would slowly relapse and my symptoms would get worse every time I participated in the online forums.

Of course, the people participating in the online forums are seeking to help fellow Floxies, to commiserate and to participate in a support group.  It is not their fault that my anxiety levels increased when viewing their sites and/or support groups.  After all, most people on those sites are trying to be helpful and supportive.  However, the net result of participating in the forums for Floxies is that my anxiety levels increased and my health declined while I was on those sites.  I am healthier and happier not participating in the online “support groups” than I was while I did participate in those groups.  Of course, this is my experience only.  Many people find solace in the Floxie community and if it helps you, great!

The people who have worked hard to create a community of Floxies to support one another should be commended.  It is because of their hard work that thousands of people have realized what is going on with their bodies and that they are not alone.  The community of Floxies is full of wonderful people.  However, you need to do what you need to do to take care of your health and if you find that hearing other people’s stories increases your anxiety levels, get off the internet.  For you.

7.  Diet.  I lost 11 pounds in 18 days when I first got floxed.  My body was going hay-wire and it seemed like an allergic reaction.  I had no idea what I could possibly be allergic to so I stopped eating almost everything.  I didn’t eat sugar (including fruit), gluten, dairy, soy, anything non-kosher or anything spicy, or drink any alcohol or caffeine, for a month.  I only ate vegetables and organic meat.  It’s a highly effective way to lose weight, but I don’t think that restricting my diet severely helped me to heal.  Restricting my diet gave me a sense of control, and that’s not a bad thing when your body is self-destructing, but I don’t think that it made me feel any better physically.  After a month of only eating veggies and organic meat, I started to add normal foods into my diet.  As soon as I started eating an appropriate number of calories, I started to feel better.  Not only was I Floxed, I was also wasting away when I wasn’t eating normally.  Getting enough food is an important part of healing.  Of course, it’s generally good to be on the “don’t eat junk” diet, but I didn’t find that cutting my food intake significantly helped me to feel better.

Many Floxies develop GI problems.  I was lucky in that I didn’t have many GI problems.  Many people seem to be helped by cutting gluten, sugar and/or junk food out of their diet.

I notice that I feel slightly worse than normal when I consume sugar and/or caffeine.  I think that most people do, I am just now accustomed to paying closer attention to my body.

The only food that makes me feel noticeably better is beets.  For some reason, beets make me feel great.  I just boil them and eat them.

I’ve heard good things about the benefits for Floxies of eating broccoli and other cruciferous vegetables.  I love broccoli so I try to eat a lot of it.  Unfortunately, I can’t say that I’ve noticed that it makes me feel better.

8.  Swim.  My tendons and muscles feel significantly better when I’m in the water, and for several hours after I finish swimming.  Swimming in the ocean feels especially therapeutic.  There are so many minerals and trace nutrients in the ocean, I surmise that they’re helpful for healing.  Unfortunately, I don’t live near the sea, so I swim in a pool.  I feel better when I do so.

9.  Pilates.  I started doing Pilates about 7 months post-floxing.  Pilates strengthens the core, something that is generally important, and gently stretches muscles, tendons and ligaments, something that is particularly important for Floxies.  I started slowly and gently and didn’t push my tendons, muscles or ligaments too much.  I feel that gently stretching helped my tendons, muscles and ligaments to heal and return to (close to) their pre-floxing capacity.  Take it easy though.

10.  Healing arts.  I love to dance.  I’m not a good dancer, but I love to do it.  About 16 months post-floxing I started to dance again.  Dance has been healing for me.  I feel spiritual, strong and joyful when I dance.  I’m not sure if it’s the dancing itself that I find to be healing, of if it’s the joy that I feel when I dance that is healing.  Either way, it helps.  I surmise that other forms of expression would have similar healing qualities.  If you love to sing, sing.  If you love to paint, paint.  If you love to write, write.

11.  Attitude tips.

Try not to compare yourself to how you used to be.  I used to hike 20 miles in a day.  I can’t do that anymore, but I can hike 3 miles today and I couldn’t do that when I first got floxed. Compare yourself to how you were yesterday, not to how you were before you got floxed.

Do something – anything – to work toward healing, every day.  Walk a little further than you did yesterday.  Meditate.  Take an Epsom Salt bath.  Get an acupuncture treatment.  Do a puzzle.  Whatever makes you feel good – do it.  Every little step helps.

Don’t kill yourself.  Have hope.  You will get better.

You’re not crazy.  You’re sick.  Have hope.  You will get better.

You’re not stupid.  You’re sick.  Have hope.  You will get better.

Try not to identify yourself as sick.  The mind is a powerful thing so try to stay positive. It’s hard, I know.  But try, because it’s worth it.

You will have bad days.  They will pass.  This all will pass.  It is not permanent.  You are strong –  present tense.  You were knocked down, but you weren’t killed.  You will get better.

Don’t quit your job.  Try to maintain as much normalcy in your life as you can.

It is not your fault.  Even if you knew better, even if you demanded the most powerful drug possible from your doctor, even if you self-medicated, even if you coerced your doctor into giving you the fluoroquinolone antibiotic, even if the infection that you were treating was something that you got because of doing something stupid, or from sex, even if you continued to take it after you started to get sick, even if you floxed your child/parent or other loved one – IT IS NOT YOUR FAULT.  You are sick.  You are poisoned.  You are not to blame for your sickness or for the fact that you are poisoned.  Who to blame is a discussion that I don’t want to get into because I want this to be positive, but it is not you.  You are not to blame.  You are a victim.  It is not your fault.

Lisa’s Life now

Life is good.  I don’t consider myself to be sick any more.  I’m not quite up to my pre-floxing capacity in a couple of areas.  I don’t have the endurance, energy, strength or flexibility that I used to.  However, I’m pretty close to my pre-floxing capacity in those, and other, areas.  I’m about 99% better.  Not being capable of intense exercise since December, 2011 has left me a bit out of shape, but I’m working toward being able to exercise intensely again and my stamina, strength, energy, etc. are increasing.  I can’t hike 15 miles with a backpack on quite yet (something I could do before I was floxed), but I am capable of most physical and mental activities that would put me in the “normal” or “not sick” categories.

I can work full-time.  I am grateful for the fact that I have a job that is not too demanding physically or mentally because I was able to hold onto it through my worst times.  My boss and coworkers were wonderfully understanding and they claim not to have noticed that I couldn’t think straight for about a year.  I even  got a promotion about a year post-floxing!

I can do Pilates 4 times a week, swim 2 times a week, dance once a week and walk daily.

When I was unable to walk a block I told myself that I would consider myself to be “better” when I could dance all night in heels (my feet hurt like hell when I was sick), I can do that now.  I never liked high heels, but I can wear them now.

My memory isn’t quite what it used to be, but it’s good enough to do well at my job and to maintain my relationships.

In many ways, I’m a different person than I was before I got floxed.  This has been perplexing for me and my loved ones, but it’s not an altogether negative thing.  I’m a much more spiritual person than I was before I got sick.  I was a pretty firm Atheist before I was floxed.  Now, through meditation, dancing, believing in alternative therapies that focus on energy, etc., I’m finding some spiritual outlets that I didn’t have, need or want in the past.

I have become a more compassionate and patient person.  I now empathize with people who have mystery diseases.  I used to have the attitude that I now find so frustrating in medical professionals – that if there isn’t a way to diagnose or treat an ailment, it doesn’t exist.  Now I know that people are genuinely suffering and that there is a real cause for their pain – regardless of whether or not it is acknowledged by the medical community.  My heart goes out to those in pain.

I had to become more compassionate and patient with myself as well.

I like some things that I didn’t like before I was floxed and I don’t like some things that I used to like a lot.  I hated swimming for the first 32 years of my life.  Now I love it and consider it to be an important aspect of my healing.  I used to like working out in an intense way that got me dripping with sweat.  Now I like to do exercises like Pilates that are focused, slow and deliberate.  I used to love hiking, camping and backpacking.  I miss loving those things so I’m going to try to get back into them, but I’m not sure that they’re my passions any more.  Drinking used to be one of my favorite pastimes.  My tolerance for alcohol is shot now and I don’t really enjoy it any more.  I missed it for a while even though I knew that it was for the best that I wasn’t drinking like a fish.  My appetite has changed as well.  I used to be able to eat a lot of food and I loved to eat.  I still eat, of course, but I don’t eat as much as I used to and I don’t eat with as much gusto.  This is probably a good thing seeing as I’m not into exercising intensely any longer.

Even though I would do just about anything to turn back time and not take Cipro, the place that I am in life isn’t bad, and I probably would be someplace different if I hadn’t gotten sick.  It sucks that I had to gain empathy for people who suffer from pain, mystery ailments and debilitating fatigue, but it’s probably a good thing that I now have more empathy.  I would like to think that I’m a better person from going through this.  I’m not a stronger person, but maybe I am a better person.

I hope that my tips and words of advice are welcome and helpful.  Please feel free to contact me if you have any questions or concerns.

** 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.

2,590 thoughts on “Lisa’s Recovery Story – Cipro Toxicity

  1. kris t May 18, 2015 at 2:45 pm Reply

    Lisa, I think Cipro screwed up the tendons in my back, just in terrible pain, happened after I lifted something but it wasn’t really that heavy. Took Cipro about two months ago for a UTI. I go to an acupunturist, should I just have him put the needles in my back? He is treating me for dry mouth now. What about physical therapy, do you think that would help or is that too strenous. Kris

    • Lisa Bloomquist May 19, 2015 at 7:53 pm Reply

      Hi Kris,

      I’m so sorry for the pain that you’re going through!

      Acupuncture helped me a lot, but I don’t know enough about it to be able to say where your acupuncturist should stick the needles to help you. Sorry! I hope that your acupuncturist is knowledgable about helping with back pain!

      I think that physical therapy can be helpful, but that you should be careful so as not to strain your body too much. I think that it’s important to find a physical therapist who is understanding and empathetic about FQ toxicity. He or she should know that your tendons are weakened, and that you shouldn’t be treated the same as someone who has a sport injury. Of course, you should listen to your body and don’t push yourself past the point of pain – unless it’s something that you feel really comfortable with. With those caveats noted, I think that movement is healing and that PT can be very valuable and that it has helped people. I didn’t do PT personally, but I did do Pilates with an instructor who was training to become a physical therapist. It helped me immensely (I didn’t start Pilates until 9ish months post-flox though – when I felt ready).

      Regards,
      Lisa

  2. seager May 19, 2015 at 7:02 pm Reply

    Lisa!
    Thank you for your positivity. I just got off a round of Levoquin 500 for 9 days. I now have neuropathy in my right calf and muscle spasms all over. My brain is foggy. I was put on the drug for possible “bronchitis” which it wasn’t. Drug didn’t help anything. And now I’m in this boat. I am in a scary scary place. My symptoms 3 weeks after having taken this drug are mild moderate. Did you experience that your symptoms got worse before they got better? Or did they come on slowly and then level off? I have a bazillion questions right now:/

    • Lisa Bloomquist May 19, 2015 at 8:03 pm Reply

      Hi Seager,

      A lot of people who have the symptoms that you are describing are helped by supplementing magnesium. There are many ways to get magnesium into your system. You can take a supplement pill, you can take epsom salt baths, you can rub magnesium “oil” all over your body, or a combination of all those things. Magnesium is one of the supplements that seems to help most floxies.

      My experience was that I got worse for about 2 months then steadily got better until I felt healed enough to write this story–about 18 months out. I improved more after I wrote this story and am now 100% recovered for all intents and purposes. Everyone’s timeline is different though. Some people recover more quickly than I did. Some people have a lot of bumps in the road – they get better, then they relapse, then they get better, then they relapse, then they get better and stay better. I wish that I could tell you what your timeline will be. I don’t know though. When it is impossible to know the outcome of a situation, it’s best to be as optimistic as possible. It is possible that you’ve already gone through the worst of it and that you’ll recover quickly and that this will be a distant memory in a couple months. I hope that’s true for you! Even if it’s not how your story goes, you will be okay – try to believe it.

      Hugs,
      Lisa

      • Tyson June 9, 2015 at 9:36 am Reply

        Lisa,

        Thanks for this. I think I am one of the folxies who has many bumps in the road. I am 8 weeks off of Levoquin and Cipro and am still struggling. My joints were really bad the first few weeks, mainly my knee and ankle. It was very difficult to walk and climb stairs. Now I can walk fairly normal again but I will feel pain after a long walk. I am hoping I have experienced the worst and am progressively getting better. The main thing I am still dealing with is the anxiety attacks. I was so emotional and the smallest things would trigger a terrible attack. The one thing that keeps going over and over in my head during these attacks is that this will all be permanent and I wont ever be happy again.
        I still have anxiety but they aren’t as bad as they were. Now its turning into depression which is just killing me since I used to be such a happy go lucky person. But again, all of the effects come and go. I’ll feel fine for a few days (almost back to normal) and then out of nowhere all the mental side effects come roaring back. I’m really struggling with them, but after hearing you say they do get better after so many relapses makes me happy. I am debating on temporarily getting on the some anti-depressants/anti-anxiety. I hate taking medication but I will do anything to help with the anxiety and depression.

        Has anyone else experienced positive results from taking anti depressants or anti anxiety??

        • Tyson June 9, 2015 at 1:33 pm

          Ok, I just read a lot of comments saying benzodiazepines are bad for you and should not be taken by floxies?? I got some Xanex from my doctor last week for my anxiety attacks. Should I stop taking them??

  3. kris t May 20, 2015 at 8:52 am Reply

    Lisa, thank you for writing back so quickly! You are right about the Advil, took some last night for the back pain and I woke up this morning, feeling like had taken poison! And I have taken Advil for years. Will I ever be able to take it again or is it only post-flox?

    • Lisa Bloomquist May 27, 2015 at 7:51 am Reply

      Hi Kris,

      I honestly don’t know if NSAIDs are okay for floxies after a certain time period has passed. There seems to be a large range in reactions. Some people respond horribly to them, some don’t respond at all, and others are helped. Personally, I blew up the last time I took a NSAID and I intend to never take one again. I have taken tylenol sparingly since getting floxed. It hasn’t exacerbated my symptoms. Some other painkillers that have been positively reviewed by floxies are kratom, tart cherry juice, tumeric and cannabis. If you want to experiment with NSAIDs, the only way to know how you’ll react to them is to try them. BUT, I wouldn’t. That’s just me though. NSAIDs scare me quite a bit now. There is a pinned post on the home page with a more thorough explanation as to why I don’t think NSAIDs are good for floxies. I suggest that you take a look at it.

      Regards,
      Lisa

  4. seager May 20, 2015 at 11:53 pm Reply

    Lisa,
    Thank you so much for responding. Tonight I am awake at 12:47 am from feeling like burning in my knees, twitching and anxiety woke me up cold. I am going to take a magnesium bath and try to meditate which you mentioned. I took a dose of magnesium because I’ve seen that the supplement can immensely help the twitching. I am just trying to remain calm because my husband is very worried. I am on a paleo autoimmune diet anyways (for 5 months) along with many gut healing supplements and practices so I’m hoping I’m in somewhat of a “better” state to deal with this, but boy am I afraid. Your story gives me hope and I won’t give up.
    -Thanks

    • Lisa Bloomquist May 27, 2015 at 7:52 am Reply

      Hugs, Seager! You can do this. I’m not going to deny that it’s hard. But hang in there, it gets better and you can get through it. xoxo

  5. kris t May 25, 2015 at 9:46 am Reply

    Lisa, are you able to take Advil now or did you just stay off of it while you were de-floxing? Also, what did your acupunturist do to help during your recovery? Did he/she just put in the needles for drug posioning or your well being? I just need to know what to tell mine so he can ajust accordingly. Kris

    • Lisa Bloomquist May 27, 2015 at 8:02 am Reply

      Hi Kris,

      I haven’t taken Advil or any other NSAID since I first got floxed. A more detailed explanation is a couple comments above, in response to your 5/20 question.

      In regards to acupuncture, I think that the thing that my acupuncturist did that helped me most was treatment of my anxiety. I was freaking out and anxiety can make everything worse. Acupuncture needles, and the Chinese herbs I was given, helped me immensely. I also trusted my acupuncturist, and I think that it was helpful to have a medical practitioner that I really trusted on my side. My acupuncturist told me that I was yin deficient and treated me accordingly. I’m not sure whether or not that’s something that can be extrapolated for other floxies though. If I was to say which was more helpful, the needles or the herbs, I would say that the herbs were important. I’d ask your acupuncturist, and other Chinese herb experts, what herbs may help you.

      Hugs,
      Lisa

  6. franco May 27, 2015 at 6:53 am Reply

    Hi Lisa,
    I am 36 and I was floxed 3 months ago, 5 pills of cipro over 5 days (2.5 g total). I have a question about the pain in the hands that you mention. Mine started very slowly about 2 weeks after exposure to cipro and then increased significantly during the second month. I had an ultrasound examination of the hands and they saw nothing: no inflammation in the joints and no anomalies in the tendons. So now I wonder where the problem is… nerves, cartilage, blood vessels? or maybe muscles/tendon/fascia problems caused by cipro but that the ultrasound is not able to detect? Do you have any considerations on this, based on your experience? And what was your hand pain like? Mine is connected with use of the hands, when the hands are at rest it tends to go away. When I take magnesium the pain is less. I see no swelling of the hands, maybe just a little on the veins in the fingers.
    Thank you in advance for your answer.

    • Lisa Bloomquist May 27, 2015 at 8:14 am Reply

      Hi Franco,

      Your experience sounds very similar to mine. My hands hurt horribly when I used them, but they didn’t hurt when I wasn’t using them. Pain in my hands was also a delayed symptom for me. I didn’t get an ultrasound, but the pain in my hands wasn’t something that the doctors I consulted could diagnose.

      I wish that I could give you an answer about what made the pain in my hands go away. I don’t know what helped my hands though – other than time. Time did help them. My hands feel fine as I’m typing this message to you. Any combination of the things I mentioned in my story may have contributed to the healing of my hands as well. I hope that your hands, and the rest of you, heal too!

      I don’t know whether or not the pain is from connective tissue issues or if it’s nerve pain. I wish I knew.

      Since magnesium is helping with the pain, I encourage you to continue to use it. Many people are helped by transdermal magnesium “oil.” A reputable brand is Ancient Minerals. I use it often and like it a lot.

      Best regards,
      Lisa

  7. kris t May 27, 2015 at 8:20 am Reply

    Thank you for writing back! I have sent 60 Minutes a note asking them to include your story in one of their segments, but have not heard back. I figure if they can get Lumber Liquidators in trouble, think what will happen to the people who make Cipro! Plus it could help so many people. Right now, I am dealing with the back pain and brain fog. I can’t be around a lot of noise! Or smells. I can’t seem to wear my perfume. Today I start PT and I tried a massage, but that hurt terrbly the next day. I can’t take a lot of meds like your floxie friends on this web page, but I have increased my magnesium. Only trying a half of a pill first. Kris

  8. kris t June 1, 2015 at 8:29 am Reply

    Lisa, do you think the chelated magnesium or the magesium malate is better? Gal at Vitamin shop thought the malate. Kris

    • Lisa Bloomquist June 3, 2015 at 7:54 am Reply

      It depends on the person. Personally, I take chelated mag. Magnesium malate gave me too much energy (i.e., insomnia). It treats other floxies well though. I also like magnesium threonate (sp?). It’s supposed to be good for the brain. Magnesium oil, which is mag chloride, is good too.

      Regards,
      Lisa

  9. Joanna June 3, 2015 at 6:29 am Reply

    Thank you for your story. I just finished Cypro for a uti and have been extremely anxious, having multiple panic attacks per day with tingly hands and vomiting. My doctor put me on anti anxiety medication which helps out a lot but once the meds wear off I’m back to feeling anxious. I will try acupuncture as you suggested but was wondering if you have any other tips to get myself to be normal again?

    • Lisa Bloomquist June 3, 2015 at 7:52 am Reply

      Hi Joanna,

      I think that this post is a very well-researched and interesting post about supplements for relieving anxiety – http://www.longecity.org/forum/topic/54028-treating-anxiety-safely-effectively/. I also suggest reading Ruth’s story – https://floxiehope.com/ruths-story-cipro-toxicity/ and listening to her podcast – https://floxiehope.com/2015/01/07/the-floxie-hope-podcast-episode-6-ruth-young/

      The things that helped me to get through cipro-induced anxiety are: 1. Acupuncture, 2. Meditating, 3. Staying away from all stress – especially flox related stress – that meant getting off the internet.

      I went through a recent period of pain and it induced a lot of anxiety. Kava helped me a lot. The longecity article recommends against kava, and I think that their concerns are valid. It is only for short-term use and it probably isn’t best for people who have had a history of benzo withdrawal. Personally, I’ve never had a benzo and I only needed to use it for a short period of time, so it was a life-saver for me. Be careful with it though.

      I’ve recently become a fan of chiropractic work too. It’s too rough for a lot of floxies who have tendon issues, but its purpose is to get the nervous system back in line, and it may help with anxiety. Be sure to get a chiropractor who you trust immensely if you do it.

      I think that times of stress and anxiety can throw off everything for floxies at any time. When the sympathetic nervous system goes hay-wire, it throws everything out of whack. I hope that the things that I recommended help you to get it back in line!

      I know that anxiety makes you not want to do these things, but I also suggest trying really hard to do the simple things that make us all healthy and happy. Sleep plenty. Enjoy your food. Laugh a lot. Be social. Hang out with a pet and/or children. Those things are healthy and they are healing. They’re easier said than done, but they’re certainly worth a try.

      Dr. Carolyn Dean has a lot of info about magnesium on her site – http://drcarolyndean.com/. Getting your mag levels up may be helpful.

      I hope that helps!

      Regards,
      Lisa

  10. kris t June 4, 2015 at 12:30 pm Reply

    Hi Joanna, I agree with Lisa, as my acupuncturist has helped me with anxiety also. You might want to get the book The Anxiety and Phobia Workbook which has helped me tremendously. (author is Bourne) (Lisa hope its Ok if I endorse this book) and find yourself a good therapist who will help you with breathing exercises to combat the anxiety. The other book I liked was Chronic Resilence, living with a chronic health issue. Hope this helps, Kris

  11. Gayle June 6, 2015 at 12:34 am Reply

    Hi Lisa, I am so glad to have found your story, I had a 12 day course of cipro 500 twice a day 8 weeks ago, The day after I finished I ended up in the emergency ward with an anaphalatic reaction that the Dr put down to a food allergy even though I don’t have food allergies and prescribed my steroids, thankfully I didn’t take them. I then developed red itchy blistered backs of hands and tops of feet and red hot knees, the last week my knees have become unstable and painful inside, creaking and clicking, all other joints large and smell click and clunk and I have tingling in my feet and hands along with a headache and loss of appetite. I am so scared, I have a physical job and have to phone in sick today, is it better to rest or keep trying to go on, walking is difficult although once I get going it gets easier. Do you think I will get better or gradually worse?

  12. MR June 6, 2015 at 12:08 pm Reply

    Hi Lisa, I am 37 years old guy and I was on CIPRO month back for UTI. I took 500 MG twice a day for 7 days. I was having no issues except some burning sensation in my legs and hand. I have very minor pain in my finger joint which went away after few days but I have burning sensation in my legs. Post 1 week of Cipro i saw that i have fungi in my mouth and thus dry mouth issue. I saw my GP and she gave me Clotrimazol and fluconzol for 20 days and i feel somehow okay but still i see that fungi is not gone so now she has recommended me to go to ENT which i am going to see on 9th June 2015.

    I have read your article and i really say that you did fantastic job and your story gives many a hope that they will be better soon. I am also very strong minded person and thinking that my symptoms will go soon and i will fight with it.

    I just wanted to know if you have done any specific thing for Dry mouth. i am getting better but since fungi is not going fully i just need your opinion if you have done something in this regard.

    i will post all my healing exp once i will come out of it.

    Should i start anything for burning sensation which you saw in your case it worked.

    I appreciate your response on this.

    God bless Lisa.

    MR

  13. kris t June 6, 2015 at 1:16 pm Reply

    MR, I am not Lisa, but suffer from a dry mouth also. Your dry mouth probably caused the thrush in your mouth, not visa versa. Biotene did not help me much. The spray worked before bedtime. The ENT will probably put you on Pilcarpine which is a horrible drug and I would not recommend it. It gives you saliva for awhile, but then you have terrible night sweats. I went to an acupunturist last fall when my mouth completely dried up, but it took eight sessions to finally get relief. Not mainstream medicine, but is sure helped me. I am back with him now, as Cipro damaged my mouth as well. Avoid anything spicy and stick with bland foods for awhile. Eventually it will come back but it takes a long time. There are some other artificial saliva substitutes out there, you have to go online and find them. Drink lots of water that will help also. Kris, a Fellow Floxie

    • MR June 6, 2015 at 1:55 pm Reply

      Hi Kris, Thanks for reply. I am not having full dry mouth. I am seeing white patches in my mouth and also V-Shape bumps in my mouth which says viral infection. I will surely check what ENT will recommend me and if they will give me same medication then I will avoid it. I will not have that bad dry mouth but due to Candida overgrowth I had this dry mouth. I will surely avoid what you said and I am also avoiding sugar and other stuff which cause dry mouth. before CIPRO I was having lot of saliva so I hope I will be back to normal with in month or so. Do you see that it will come back to normal as it was before.

      MR

    • MR June 6, 2015 at 1:58 pm Reply

      Hi Kris, I am sure you will come out of mouth damage issue. do you have any dry mouth issue anymore of you are back to normal as far as dry mouth concern.

      MR

  14. kris t June 6, 2015 at 2:15 pm Reply

    MR, mine became dry due to a lot of dental work last fall. I virtually had no saliva. After seeing the acupunturist, some saliva did come back but not all of it. But I have a saliva gland missing, so it is harder for me. After taking Cipro recently, it went back to being dry again. Every now and then, I will feel a spurt of saliva, and I will say to myself, goodie, goodie, but then it dries up again. I am sure Lisa will have some advice also. Sometimes it takes awhile for you to hear from her. Kris

    • MR June 6, 2015 at 2:30 pm Reply

      Thanks Kris for really quick response… yes I am not having that bad right now. but as I have fungi infection which is not going even after 20 days medication thus my GP told me to check with ENT and I am worried about that now that why it is not going. once I have that gone than I can see how it will work. I hope it should be okay 😦 since I had lot of saliva before this fungal infection. Doctor said sometimes CIPRO kills all good bacteria and thus candida infection. I am most worried about dry mouth right now.

      Nice to see that we people affected with CIPRO helping each other. really nice forum.

      MR

      • kris t June 7, 2015 at 10:46 am Reply

        MR, I thought about you in church today. Was so dry and then singing all those songs! Had to leave the service early though. My stamina is just not back yet. I think Cipro zapped my energy level. I wonder how long that will take to come back? Kris

        • MR June 7, 2015 at 11:17 am

          Hi Kris,

          I must say that you will be fine as far as energy level concern and you will also fine with dry mouth issue somehow so that you say yipeee…. time is main healing process and need to wait for time. my dry mouth issue is getting recovered… I am doing below things to come back to normal.

          1) in morning initially I was having dry mouth, now it has gone. saliva started coming again though still I have yeast infection and viral infection both.
          2) In morning I am doing brush with non alcoholic paste and post brushing I am drinking 3 glass of water. even after brush I am scrubbing my tounge by putting some salt on it and very genteelly.
          3) in afternoon post lunch I am also doing brush and warm salt water gargle.
          4) again I repeat same process in night and this helps lot.

          I am still facing issues with burning sensation but not worried much as I said I fight with it but dry mouth cause irritation and thus worried about it.

          I AM STILL NOT NORMAL AS FAR AS DRY MOUTH CONCERN BUT IMPROVED 60% after fungal medication and now I am out of medication so I can see the change being on medication you can not be sure that you will be ok post medication.

          I pray for every one who suffers from this medication and wish that slowly and steady all will come to normal. Amin……

  15. kris t June 7, 2015 at 11:57 am Reply

    MR, where do you find the toothpaste? Kris

    • MR June 8, 2015 at 2:36 am Reply

      Hi Kris, You can go to indian store any near by if you can find out where they have one tooth paste call DABUR RED. which has very much natural element and it will be good to have for dry mouth. I must say you can try that one twice a day. I hope you will feel better with this. I hope you will find out indian store or food market near by your place.

  16. Cara Greene June 8, 2015 at 4:51 pm Reply

    I too believe I had a terrible reaction to Cipro. I have been taking Cipro intermittently for several years due to benign cystitis. I most recently took it about 4 months ago. About two weeks after taking Cipro for an UTI I woke up in the middle of the night with severe pain in my shoulders – right being worse than the left. A few days later, I lifted a sauté pan and “pulled a muscle” in my right forearm. The pain was so severe that I had difficulty moving my arm/ hand/ shoulder for about 6 weeks. There were days that I was so tired and so uncomfortable that I just couldn’t get out of bed. I went to my ortho and he diagnosed me with tendonitis of the rotator cuff and recommended PT, which I started. A few weeks later, not figuring out the Cipro link my GP advised me to stop taking Lipitor as that might be contributing to the muscle soreness and cramping in my legs, hips, arms that was keeping me up at night. A few weeks later, with the muscle soreness and shoulder getting slightly better, I picked up a pair of binoculars and as soon as I looked into it I felt a pop and click in my right eye. I went to the Opthalmologist today and he diagnosed probable Brown syndrome (eye is restricted in movement due to problems with the muscles and tendons that surround the eye) which can result from am inflammation of a tendon sheath leading to the eye. I can find no research linking the Cipro to the eye syndrome, but it certainly seems possible. I suppose now it’s a waiting game – to see if the eye syndrome returns and the muscle/tendon soreness recedes

  17. kris t June 8, 2015 at 5:02 pm Reply

    Cara, do you feel that the PT is helping? I just started PT myself about two weeks ago for shoulder and back, also from lifting something after a few months off Cipro. I am worried it will make other things worse, like my wrist and elbow, because they have you use those rubber straps. I can only move my head so far and my neck was affected as well. Kris, a Fellow Floxie

  18. Carol June 9, 2015 at 4:28 am Reply

    Hmm, all this time I thought it was just me, then a friend sent me to the internet. I took Cipro in 2012. I developed severe tendonitis in my shoulders. It took over a year for that pain to subside, but now I’m getting other pains, which I contribute to the Cipro. I will try the magnesium and stay away from Motrin.

  19. tammyrenzi June 9, 2015 at 12:52 pm Reply

    Hi Tyson,

    First, I want to wish you continued recovery. When you say you’re 8 weeks out and can take a long walk, I think that sounds promising. Back in 2006, I experienced much of what you’re going through – joint pain, anxiety, cycling thoughts. In addition, I experienced extreme brain fog, poor fine motor skills, fatigue, snapping vertebrae (I know I’m forgetting other things…). It took a long time to heal, but I did heal. I went from collapsing on the couch and often being only able to work half days to walking five miles a day and lifting some arm weights (this took time!). I did take Neurontin and Klonopin for nerve pain. I wasn’t having panic attacks, more just general anxiety, but those meds were not for that. They helped with the pain so I could continue work. The problem is that Klonopin is a benzo and not for long-term use. I wish I only took the Neurontin as it was easy to discontinue.

    Time is the key. I was so scared, as you are, that the anxiety was leading to depression. What I think is important to know is that many of us are doing much better than we were post-flox. Just keep listening to your body – don’t overdo it. You’ll feel good one day and think, “Oh, I can move a mattress.” (Don’t do this! I tried it and was in pain for weeks.) Keep moving forward slowly and see what works best for you!

    It took me nearly two years to feel like “the old me” again and then three more to feel “better than the old me.” I started eating better, thinking about life better, and exercising more. When I had a relapse this past year (Sept 2014 – December 2014), it wasn’t as bad as the first time and my approach was much better. I took it easy and made my only daily goal to heal. I actually put a sticky note on my laptop that said “Heal.” It was the only item on my to-do list. I didn’t need meds and relied on gentle yoga, meditation, and a healthy diet. If I need to, I will heal myself again.

    Don’t give up! Stay around positive people!

    • Tyson June 9, 2015 at 1:46 pm Reply

      Thanks tammyrenzi,

      Thank you for your response. I got some Xanex from my doctor last week for my anxiety attacks. Should I stop taking them?? Yes, I had all of those symptons you mentioned (brain fog, bad motor skills, and fatigue). I think my brain fog has somewhat gone away, but I definitely don’t feel as sharp as I used to. Yes, those cycling thoughts suck!! I just keep thinking this will never go away and this will be my life from now on. Which then triggers depression.
      I can deal with all the pain in my limbs, its the mental effects that are tearing me apart. I have completely closed myself off from my friends because I don’t want to tell them. I’m soooo emotional, which is very unlike me. I was crying a lot in the beginning, which I haven’t cried in 10 years before this. I don’t want to tell anyone about my condition because I am a private person. I did tell my girlfriend and she is very helpful. I am 27 and would like to go hang out with my friends and enjoy a beer like I used to. But for some reason after I drink I will wake up at like 4am with a pounding/racing heart beat. That lasts for a few hours and then it finally goes away. Its miserable and I haven’t drank alcohol in 4 weeks. I pray that goes away the most.

      Thank you for your support and I am hoping I will get better soon. I just cant get over the fact of how much time it will take to do so. It scares me to think about what I will lose along the way.

      • Tyson June 9, 2015 at 1:58 pm Reply

        Also,

        I have been taking Gaba from GNC 750mg 3x daily, I read in a posted article above that Gaba should not be taken?? I’ve also been taking L-theonine, 5HTP, and Magnesium oil spray.

        • Lisa Bloomquist June 9, 2015 at 2:54 pm

          Hi Tyson,

          I found this to be very useful – http://www.longecity.org/forum/topic/54028-treating-anxiety-safely-effectively/.

          As far as benzodiazepines go, I have a few thoughts. First, people who have gone through benzo withdrawal in the past should NEVER take a FQ. Second, they are not for long-term use. Third, they can cause the symptoms that they are supposed to alleviate. They’re a slingshot drug – they alleviate symptoms at first, but they exacerbate them in the long term. Fourth, read Anatomy of an Epidemic and http://www.benzobuddies.org before taking any psychotropic drug. Fifth, taking a benzo is better than jumping off a bridge, and if you’re at that point, you won’t get any judgement from me if you take it. But, I don’t think that those drugs should be taken lightly.

          Even though the longecity article recommends against things like GABA and Kava, I think that they can be used in the short term when absolutely necessary. Kava was a lifesaver for me when I had panic inducing pain. I was only using it for a couple weeks though.

          Meditation, talk therapy, laughter therapy, doing things that fill you with joy (like watching your favorite movie, playing music, being with friends, etc.), as well as alternative therapies like acupuncture and chiropractic can be helpful.

          Ruth has some great advice in her story and podcast about dealing with the anxiety and loss of sense of self that comes along with getting floxed. I highly recommend checking them out.

          Regards,
          Lisa

      • Ruth Young June 9, 2015 at 7:52 pm Reply

        The FQ downgraded your GABA-a receptors, or so I’m guessing based on your symptoms. Avoid NSAID’s because in the presence of an NSAID the FQ’s ability to deactivate your GABA receptors is increased by many thousands of times.

        Alcohol binds to GABA receptors. Because of cross tolerance you cannot drink alcohol. Judging by what others have said, it could be a few years before you can tolerate it normally again.

        I was ok with this until my nervous system healed a bit more and I could tolerate polka music again in the car while I’m driving. I’ve been listening to these Marv Herzog Polka CD’s and it’s like every song is all about beer! It’s making me want a beer so bad! I dreamed I was drinking beer the other night and it was so good. “Beer, beer, glorious beer, fill your stein right up to here! Don’t be afraid of it, drink til you’re made of it…” Yeah, not so much if you are a Floxie.

        So this morning I was thinking, “Maybe when I get to heaven I could have a beer. I won’t be a Floxie in heaven.” But then it hit me. In heaven there is no beer. I was actually listening to that song as I was thinking about possibly finally getting a beer in the afterlife. “In heaven there is no beer, that’s why we drink it here. And when we’re gone from here– our friends will be drinking all our beer!” Yep. They’re getting mine and yours already.

        But the good news is your personality will come back long before your CNS is ready to tolerate alcohol again. You will want to laugh, hang out and have a good time with friends within a matter of months, not years.

  20. Ruth Young June 9, 2015 at 2:48 pm Reply

    I find Idebenone to be very helpful for the anxiety/depression. Some people get increased anxiety and insomnia from it, but you can get that from traditional SSRI’s as well. The nice thing about Idebenone is that it is the best antioxidant in the world. It works as an antioxidant even if there is no oxygen getting to cells– most antioxidants become oxidants in that situation. They pack organs for transplant in Idebenone. I found an article somewhere that it was shown to protect cells from Cipro tendon damage if pretreated with Idebenone. So I got some. My tendon got better– I was also taking MitoQ, so who knows what helped most with that.

    But within ten minutes of taking my first dose of Idebenone I got enough relief from the anxiety to be functional. I went from wanting to crawl out of my own skin to being still uncomfortable but ok almost immediately. This was not a placebo effect, as I was terrified to take it. I read that the possible side effects were increased anxiety and insomnia, and I had plenty of each of those already. But it helped, despite my fears.

    It helps your body use tryptophan better to make serotonin. The bottle says it promotes positive brain chemistry. The serotonin boost lasts about four hours. I take it two or three times a day with meals. It is fat soluable. I take 50 mg at each dose. You can go higher, but I doubt you would need to. I get mine at HBC Protocols online.

    Theonine is also good. L-Theanine is proven safe at high doses. I used to take 200 mg 3x a day. That is best on an empty stomach.

    I was like you– able to walk and get around pretty good by eight weeks, but I had the continuing brain fog for longer than that and definitely the anxiety. That is still continuing at sixteen months out, but slowly getting better. The Idebenone continues to help. I don’t really even take much theanine anymore.

    If you are on a Benzo now I think you have to do a very slow taper. Usually you only need to do a super slow taper if you’ve been on it long term, but with the FQ damaging your nervous system first, I think you might need to be extra careful. Benzo buddies has information on how to do a very slow taper. It’s extremely dangerous to just quit a benzodiazepine cold turkey under any circumstances.

    I used to take a product from a company called Neuroscience called CalmPRT. It’s pricey but worth the money. It is as good as a benzo at controlling the anxiety. Made me kind of stoned, and as I healed I decided I didn’t like that feeling. But at the time I needed it, it really helped. I found out I can’t take it and play the organ at church because it made me so mellow that I was making all kinds of mistakes, but I felt really calm about it. I would just leave my foot on the wrong pedal for several beats at a time because it was more convenient, and I felt fine about doing that… Don’t drive while on the CalmPRT. Probably not a good idea.

    Lately my brain has been sharper at times– way sharper. It’s like I have this super laser brain. It started happening a few months ago. I think it’s from increased adrenaline, but not too much of it. When my symptoms are flaring just the right amount I can play counterpoint on the organ like nobody’s business. I can perceive multiple melodies as if I’m sitting back and listening and think about what I want for lunch at the same time. If I’m having a really good day, a very normal window, I lose that ability. So it’s not the Idebenone– it’s from the FQ toxicity syndrome. My face will be slightly numb, or the bridge of my nose feels tight, and the world seems just a bit more stimulating than it should– but I can play the organ like I’ve never been able to play ever in my life. So that has been cool.

    Don’t worry about getting all your cognitive faculties back. You will. I imagine you will hit the point I am at and get a little sharper. I don’t think it’s going to last long term though.

    • Jason October 16, 2015 at 10:52 am Reply

      HI Ruth. Idebenone is just another cancer causing chemical concoction drug. I don’t know where you got the idea that it is the best Antioxidant in world, it is a synthetic combination of chemicals, and therefore frankly does NOT belong inside the Human Body, no chemicals are meant to be put in the body, ever. Glutathione is the bodies most important Antioxidant, and one that actually belongs in the body.

      They are also part of the Quinone family of drugs: https://en.wikipedia.org/wiki/Quinone

      For anxiety, since we know this can often be caused by Gaba receptor damage:

      1. Gaba balances Glutamate – Floxies need to avoid Glutamine, Glutamic Acid and the 50+ sources of MSG in which many of them are hidden in foods under other names (google hidden sources of MSG). ALL of these will very likely cause Floxies with Gaba damage issues, I know they did me and that was WITH this knowledge, restaurant food, acciedently in some supplements etc

      2. People can take GABA. Now foods sells it, many others do too. Helped me out a jam several times. Of course there are some other good supplements too but Gaba was what helped me. If I had high strung anxiety (I did not) then I am sure I would take several things

      • Jason October 16, 2015 at 11:22 am Reply

        I seen below you are saying flooding the receptors with too much Gaba could be bad, which could likely be true I’m unsure of this (too much of anything is usually not good) but I don’t see how taking chemicals is a better solution. Time will likely/hopefully heal them, and in the meantime a bandaid fix is needed, my money goes to “natural” ways to do this: Gaba, Magnesium, L-theanine, Melatonin, Seratonin, Valerian Root, and many more proven to help anxiety, where as chemicals are proven over and over and over again to cause cancer, tons of side effects, dependency, and all kinds of other issues. Just my opinion from many years of research, and other people’s experiences etc. Hope you are well. Cheers

  21. Tyson June 9, 2015 at 5:58 pm Reply

    Lisa and Ruth,

    Thank you both for your in depth responses. I have only taken a few Xanex (.25mg) and I really didn’t notice a big relief. I will toss them out, I want no part of drugs after this whole situation. I have taken a lot of the GABA though, as I thought it was basically mandatory for a floxie. I will try and cut back on that too. I feel the Mag oil spray helps as well.

    I used to get horrible attacks for the first couple weeks, and then they went away. I would feel good for a few days, and I thought, “Yes!! its all over!” Then after those few days I would start to feel all the symptoms come back (memory loss, confusion, brain fog, no appetite), and the anxiety was always the worst. I will try to track these “good windows” and see if they are diminishing with time.

    My anxiety is the worst in the evening around 8pm or so (very bad repeating thoughts during this time). I’ll have this bad attack for a few hours and then around 11pm I will suddenly feel calm and relaxed (not totally but much much better). Its very strange but I am so grateful when I finally calm down.

    Then comes the task of getting to sleep. I used to get terrible night sweats and wake up many times for the first few weeks. Thankfully that doesnt happen anymore. Now I have to take 10mg of melatonin and focus on good thoughts to get to sleep. I still wake up every morning at 5am, then I have take a little more melatonin and will get back to sleep at 6am. Then I have to wake up at 8am for work and I’m a complete zombie till about 1pm. The melatonin hangover doesn’t help the depression either, which sucks! It seems everything I do to help one thing always contradicts another. Anyone have a better sleep remedy???

    Again, all of this comes and goes (mostly comes). I will be bad for a couple weeks then feel like I’m improving over the next few days. Then it all comes back. Its crushing my spirit of hoping that I’ll be healed. But I’m not losing hope and I’m doing my absolute best. I will definitely try the Idebenone and CalmPRT that Ruth has recommended. I hope its they’re not addicting and don’t have long term effects.

    I’ll also look into acupuncture. I never ever ever thought I would need acupuncture or any kind of therapy, all of this is overwhelming but I’m sure I will get used to it and gradually heal like most others. I also will get off the internet as Lisa recommended. It definitely contributes to my anxiety. I was on it the first couple weeks then told myself never to get back on because of this. My symptoms are kicking extra hard today so I decided to get back on today.

    • Tyson June 9, 2015 at 6:13 pm Reply

      I forgot another question I wanted to ask.

      Have either of y’all experimented with IV therapy? I’ve heard getting a Magnesium IV is helpful, as well as others.

      I’ve also noticed when I drink fruit drinks like Naked Juice, that half way through the bottle my whole body will get very tingly and my heart starts pounding and I find myself gasping for air. It lasts for about 10 min or so then goes away. I can’t decide if this is a good feeling or bad feeling. I don’t know if I’m deficient in a vitamin that this drink is giving me or if there’s something in there that’s giving me a bad reaction. Maybe its my blood pressure going up, I don’t know. But again, I cant tell if its good or bad. Any thoughts on this?

      Thanks!

    • Ruth Young June 9, 2015 at 7:07 pm Reply

      The CalmPRT is not addictive. I took two doses a day for awhile, then quit cold turkey with no ill effects whatsoever. I’ve been on and off it as needed, no big deal.

      If I go up and down on Theanine and Idebenone too much I can get a headache. Things that raise serotonin (both do) can give you a headache if you bounce around a lot on how much you take. But I have forgotten my Idebenone at times. I can skip the evening dose if I don’t feel I need it. I intend to stay on Idebenone for life– I had depression before and it treats that very effectively, so I don’t really care if it’s addictive. But it does not seem to be. And for over a year the same dose seems to have about the same effect. I have not had to increase it.

      Tryptophan helps with sleep for me. Melatonin can raise blood pressure. Tryptophan will be made into serotonin which is converted to melatonin in a dark environment. So no tv or computer after taking the tryptophan. Since I take Idebenone it seems like I can get a very good effect with a small dose of tryptophan. The bottle says to take three tryptophan for sleep but I only need one.

      My sleep was a lot like yours. It got better over time. I wind down more easily most of the time now.

      It is weird but sometimes doing stuff that is good for you can freak your nervous system out. I had the IV’s with magnesium, vitamin C and glutathione. I had a bad exacerbation of symptoms that evening. But the rest of the week following was a lot better. If you do it make sure you can just rest afterwards. You may feel worse initially.

    • Ruth Young June 9, 2015 at 7:40 pm Reply

      This heals by cycling symptoms. Do not be afraid of the downturns. They do not mean you will not heal. My theory is that when our nervous system works at getting back into balance we feel it. When we have a normal window it is nice, but we probably aren’t actually healing much at that time. It is when you feel worst that your body is working hardest at making repairs. After a bad downturn I usually feel better than before. Each rough cycle gets me closer to 100%.

  22. kris t June 10, 2015 at 5:29 am Reply

    I take cereal and milk before bedtime. The milk makes me sleepy. I, too have the bad thoughts around 8:00 in the evening. I had to cut back to one day at work, so I am depresssed with not much to do, although I am in Physical Therapy because the Cipro weakened the muscles in my back and now I am in so much pain. I have that awful brain fog but usually in the morning when I first get up. It subsides in the afternoons. Kris

  23. kris t June 10, 2015 at 5:33 am Reply

    Ruth, where do you get this Idebenone? How many milligrams do you take? Kris

  24. kris t June 10, 2015 at 7:02 am Reply

    Tyson, I would try diluting the Naked Juice with water or trying a different brand altogether. Ruth and Lisa, what are your thoughts on this? Kris

  25. Tyson June 10, 2015 at 8:24 am Reply

    Yes, where and what brand of Idebenone and MitoQ do you use? I just ordered the CalmPRT from NeuroScience. Its amazing how much money I have spent on all of this stuff plus all the doctor fees. Oh well, I’ll pay anything for my health and happiness.

  26. tammyrenzi June 10, 2015 at 8:35 am Reply

    Hi Tyson,

    If my recovery is any indication of what is possible, I went from being in near-constant pain and barely getting around (as a 34 year old) to being able to share a beer (or few) with my husband and friends. Though I am much less able to tolerate alcohol and caffeine, I do enjoy them in smaller doses. My body and bank account really responded well to that!

    I hope you’re finding your way to heal.

    If you ever want to email, I’d be happy to correspond that way.

    tamrenzi@gmail.com

    I’m so glad your girlfriend is so supportive! Having a few people I trusted was very helpful to me. I could email them and they wouldn’t think I had gone crazy!

    Hope today is a good one!
    Tammy

  27. Ruth Young June 10, 2015 at 1:15 pm Reply

    I get Idebenone from HBC Protocols online. They are not the only place that sells it though. I take 50 mg. 3x a day. It’s been used at nearly twice that dose in studies on Alzheimer Disease, so it’s safe at that amount. Other studies have proven it safe for long term use. I would try one dose per day and see how it goes. Some people don’t need that much. It might increase your anxiety. Or it might help a lot. You’ll just have to try it.

    MitoQ is the brand name. It is a targeted CoQ10. (Idebenone is CoQ1.) The problem with MitoQ, and I only learned this recently, is that if your liver is not working well it can become an oxidant. The same liver enzyme that FQ’s are notorious for depleting is the one that if you don’t have enough of it, MitoQ will actually harm your cells.

    My liver must have been fine. I tolerated a calcium channel blocker with no side effects right after I got floxed, so obviously I was ok, because the same enzyme that breaks down Verapamil is the one that you need to take MitoQ. Can’t remember which one it is at the moment. Long day at work today.

    But anyway, for me MitoQ was awesome. While I was taking it I could hike up bluffs without even getting winded, and this was just a few months after I was floxed. It definitely did some awesome things for me, and my tendon healed! But other floxies who have taken it have ended up bed ridden for months after just a couple of pills. So unless you are sure your liver is working it might not be worth it to roll the dice on the MitoQ. When it works like it is designed to it works really, really well. When it doesn’t, it can set you back by a lot.

    Idebenone was also shown in studies to prevent tendon damage from FQ’s. So if it works for you I’m not sure that you need MitoQ. Idebenone is also targeted to the mitochondria– it has to be, because they’ve been testing it for use against diseases of the mitochondria, and for some of them it has worked, but not all.

    I recently started putting micronized purple rice into my water bottle. It’s a powder, I just it up whenever I take a drink, so it’s easy to take, and has really no flavor. It’s highly nutritious, packed with amino acids and antioxidants, grown in very fertile soil in Thailand, away from pesticides, GMO’s and all that nonsense. They just mill it down very small, getting rid of all the starch and carbs and anything that isn’t nutrition, so that it takes sixty pounds of rice to make one pound of this product. It is supposed to be able to get into even damaged cells and nourish the mitochondria. It lowered my blood pressure in two weeks, I dropped a few pounds and my blood sugar went down from pre-diabetic to high normal. So it did something that even MitoQ couldn’t do. I have dropped the MitoQ. I’m hoping the purple rice gives me that improved athletic performance I was getting from the MitoQ.

    I don’t like the fillers MitoQ uses, so to take it long term really is a concern. The purple rice is just food so it is all natural. I buy it from Kare Possick. Her number is 727-798-8764 if you want more information. If you buy and go on autoship I get a free bottle. I’m not telling you to do that, I am just disclosing that. But you could even just get one bottle and try it. Some floxies are trying a brown rice product instead because the high antioxidant content of the purple rice was causing them a rapid detox which was uncomfortable. The rice is an anti aging product, as is MitoQ. For me, I’ll probably stay with the rice long term, as I am old and could use some anti aging benefits. For younger floxies it might just be something you want to try short term. FQ’s strip so much out of our bodies– this micronized rice seems to be a way to put some of it back.

    I am sleeping a bit better and feel calmer most of the time. But I have also had two pretty intense relapses since being on the purple rice. It may be that it is stimulating my nervous system to heal and I’m feeling that, or maybe I would have relapsed anyway. I’m just saying that it’s not a magic bullet. Healing downgraded GABA-a receptors is a long, painful and difficult process and there is probably nothing that can make it happen overnight. But I’ve also had some really wonderful normal windows since starting the purple rice– much more normal than before, if that makes any sense. So I seem to be making progress, but I do so many things for my health it is hard to say exactly what is helping the most.

  28. kris t June 10, 2015 at 1:23 pm Reply

    I read online that the idebenone could cause strokes. But anything could cause problems I guess. Its very expensive, also, saw on one webpage, $90 per bottle. I am so glad you can work, I can’t work right now. My stamina is getting better, but I am in so much pain in my back and shoulder. I have to use a heating pad intermitedendly during the day. Also what do you feel about physical therapy and massages? Since mine is an injury, I felt PT was the way to go. But sometimes I feel I am furthering damaging my muscles. How old are you, I will be 60 this year. I thought I was the oldest floxie on here!! Kris

  29. kris t June 10, 2015 at 1:31 pm Reply

    Also, this Phillipe, one of the Floxie stories has helped me quite a bit with nutritious advice but he told me to get this beet juice from Whole Foods, among other juices. One sip and it was in the trash. Let alone, I have this dry mouth and it just dried it up worse. Any thoughts on the juices. I guess I need to go back and read your story, Ruth. As far as my liver, I am not sure. I had a catscan done recently and it did show that I have a huge cyst on my liver, but they are not going to do anything about it at his point. Kris

  30. Ruth Young June 10, 2015 at 3:02 pm Reply

    Kris,

    I could not find anything saying Idebenone causes strokes. In fact, if a person has an ischemic stroke while on Idebenone it will improve the outcome. It protects tissues when there is low or no oxygen. MitoQ becomes an oxidant in that situation, as do most other antioxidants. They even are studying Idebenone for use in people prone to strokes to help prevent them. So I’m sure people in those studies are having strokes, but that does not mean Idebenone caused the stroke. Aside from anxiety and insomnia the only side effect I found was muscle breakdown in women age 60 and over. This was a very common side effect in older women– sudden and severe weakness. I did not find at what dose this was happening. I’m in my late forties and hoping I continue to tolerate Idebenone because it’s better than Prozac for my depression, will protect me in case of an ischemic heart attack or stroke or even just exercising too hard causing some of my tissues to be low on oxygen. It also helps with communication between the two hemispheres of your brain and raises levels of some other neurotransmitters in addition to serotonin. It’s not expensive from HBC Protocols. Last time I ordered I bought three bottles and they sent me one for free.

    I am a licensed physical therapist assistant, so I’m all for PT, but I think most PT’s don’t understand floxed bodies and can do more harm than good. I did get a lot of relief from ultrasound though. If you can get them to give you ultrasound (very low, no heat) that would be great. I have a home machine. I need to use it more. When I was first floxed I used it every day, but now that I’m not in terrible pain I don’t keep up with it.

    Most juices have too much sugar. Unless you are juicing, making your own, they probably aren’t the best thing. I do sometimes have juice– but I dilute it with water and put a little Great Lakes Gelatin in there. I get the green can. That stuff is awesome and dissovles in hot or cold beverages.

    I think you’d be better off with the purple rice I mentioned earlier than MitoQ, especially if something is going on with your liver. Maybe you want to just try that and not even the Idebenone, because it’s natural– it’s just food. But it’s a food our bodies can use easily. I wish I had known about it a lot sooner.

    I also like the magnesium threonate. It seems like my body is able to utilize it better and I don’t have to take so much. But I take it only in the morning or for some reason it can keep me up at night.

    It really sucks that we are stuck experimenting on ourselves as to what will cure us. It costs a lot of money and sometimes we don’t even know if something is hurting or helping. But I’m doing pretty good, so I guess the things I tried have worked. I just think sometimes that the drug companies could reimburse me, even half the cost, of all the stuff I’ve tried that I never would have tried had their drug not essentially disabled me overnight.
    Ruth

  31. kris t June 10, 2015 at 4:07 pm Reply

    Thanks Ruth for your quick reply. You said you also play the organ in church? I guess your faith got you through this as well? I won’t say too much here since this is an open forum. Tell me again where to find the purple rice. Will Whole Foods have it? Kris Ps You are right about physical therapists not knowing about floxies and all that, he looked at me like I was crazy the other day when I was there.

    • Ruth Young June 10, 2015 at 4:33 pm Reply

      You can’t get the purple rice in stores. This isn’t just purple rice it is micronized– it’s really small so it actually gets into even damaged cells. I can’t remember the company that makes it. I just buy it from Kare. Her number is in my original comment about it above. Her husband had a tumor shrink since he has been on it. She credits it with saving his life. She’ll tell you about it.

      • Tyson June 11, 2015 at 8:23 am Reply

        Ruth,

        Thank you for all the info. I have ordered the purple rice and mentioned your name. Hopefully it will do something good for me!!

        I also had a question about tinnitus, mine has really kicked in since I have tried to cut back on taking GABA since you and Lisa say it does more harm than good. I thought GABA was a good thing and I have taken a lot of it since being floxed. I know you mentioned taking Alpha lipoic acid (250 mg) and Benfotiamine (150 mg). Did you find that those worked pretty well for you or is there anything else out there to try???

        Thank you

  32. Franco June 11, 2015 at 2:16 am Reply

    Hi Lisa, hi all,
    I took cipro about 4 months ago, not a big dose (2.5 g). Now I am still struggling with inflammation in the knees. Even if they have never been swollen, there is some inflammation (seen on the MRI). The rheumatologist told me I have either reactive arthritis or the adverse effects of cipro. So I am asking myself if there is a way to distinguish the one from the other. They have similar symptoms, at least for the musculoskeletal part…
    I am not a doctor, but many stories on this website can probably be interpreted as reactive arthritis too. We all took FQ antibiotics because of a bacterial infection (or suspected one) so the reactive arthritis scenario can be applicable to many of us.
    Has any of you already put some thought on this question: how to distinguish cipro toxicity from reactive arthritis? Thanks and hope we all get well soon.

  33. Ruth Young June 11, 2015 at 10:14 am Reply

    Low GABA levels are associated with tinnitus. Damaged GABA receptors will yield the same result. CalmPRT has precursors to GABA in it and that will ensure you have enough GABA without overwhelming those receptors with too much of it. Only time will heal the tinnitus from downgraded GABA receptors. The supplements only helped my underlying, pre-existing tinnitus. In a flare up, my tinnitus comes back. While in a normal window I can get to zero tinnitus taking benfotiamine and ALA. However, both of those are very good for nerves. They just won’t get rid of tinnitus from downgraded GABA receptors.

    • Tyson June 12, 2015 at 1:14 pm Reply

      Ruth,

      Thank you for your response. So you’re basically telling me there’s no point in picking up the benfotiamine and ALA?

      I’m also having a hard time understanding that I need to stop taking GABA. So many people on here say to take it and a couple doctors I’ve seen tell me to take it…but I’ll try and stop taking it or at least take less.

      • Ruth Young June 12, 2015 at 2:35 pm Reply

        If you flood GABA receptors with too much GABA some will pull back. The same thing happens with SSRI’s and serotonin receptors, so that the medication becomes less effective over time and hard to get off– though nothing compared to Benzo withdrawal.

        You want those GABA receptors to upgrade. You cannot flood them with any substance with a strong affinity for those receptors. Your body Will try to protect itself by deactivating some of those receptors. If you have too much GABA you could end up somnolent or unconscious. Since your body can’t dump the GABA it dumps the receptors.

        To treat or prevent peripheral neuropathy benfotiamine and ALA are great. To treat some forms of tinnitus they, in combination with magnesium, actually work. But they will not treat tinnitus resulting from downgraded GABA receptors. Flooding those receptors with GABA was covering up the problem, but it was not fixing the underlying problem of an autonomic nervous system thrown out of balance by the loss of GABA-a receptors. Only time will do that.

        ALA and Benfotiamine are good for nerves and therefore good for floxies. But we aren’t made of money either. I dropped both of them. My underlying tinnitus came back. But do I need zero tinnitus since it does not bother me? There comes a point where I have to pick and choose.

        Also, I think the purple rice has a lot of nutrition in it and actually helps cells be more receptive to nutrition getting into the cells. It generally helps people who are insulin resistant. So maybe you don’t need to take so much of so many supplements if you are taking the rice.

        If you end up with PN issues you can always add the ALA and Benfotiamine later.

        Another thing good for nerves is methyl B-12. Make sure it is methylated. I mention it because it is also good for regulating sleep/wake cycles. My sleep is better when I’m taking it.

        You may get burning sensations that are not peripheral neuropathy– they are from downgraded GABA receptors. I haven’t had that in a long time but at two and a half months out my whole body, even my scalp and the bottoms of my feet, burned like someone was burning me with matches. That lasted one day and never came back that bad. It seemed to settle in my left arm and the tops of my ears, but now I haven’t had that burning in a long time. It was not PN. My nerves were fine but my GABA receptors weren’t there to calm things down. Now that I’m healed more I don’t burn as much or as often. Just don’t freak out if it happens– it is not PN and goes away. You’ll be able to tell the difference. I recently had an issue with my ulnar nerve not related to Cipro. It was from playing piano all day at school, then coming home and laying down instead of stretching. I think my dorsal scapular nerve was affected also. The muscles were so tight that it was trapping the nerve. It hurt like hell. If I pulled my arm across my body I got all the PN symptoms people complain of. It was a way different feeling than the burning from downgraded GABA receptors. I did ultrasound on my shoulder, heat, exercise, stretching and my husband rubbed on it for thirty minutes. No more nerve pain. Welcome to middle age. You’ll also know if you get burning from GABA receptors because it comes with the feeling that things are just too stimulating. Doing something too stimulating can bring it on.

        All of this is a big pain in the butt, but as someone who seems to be nearing the end of it, I can tell you that you will get through it. Push good nutrition, listen to your body, give it time and you will be ok.

        • Tyson June 13, 2015 at 10:28 am

          Ruth,

          Again, thanks for your response. Seriously.
          I just got the CalmPRT. I had a good response to it right away, but it definitely made me feel a bit “off.” I felt confused and just plain weird on it. It did help me calm down in the middle of an attack so that was good. I guess I will try it again, and the “weird” feelings will get better. I will try anything to not be put on medication, although its getting really hard for me lately. I thought it should be getting better after 2 months but the mental stuff is getting worse and more frequent.

          The Idebenone and MitoQ should be getting here soon as you recommended. Hopefully that will help too!!

        • Thiago July 30, 2015 at 8:42 am

          Hi Ruth.
          Sorry my bad English Google translator.

          I read your post about the gaba receivers. Had these symptoms of burning and burning in the chest, abdomen and back. I thought it was peripheral neuropathy. I started with ALA and benfotiamine and symptoms decreased enough.

          Would be the cause Gaba receptors that? Over time they recover and these sensations of burning and super sensitivity back to normal or always have it? Some medications can help or only time? It has three months to feel it.
          Many thanks again!

  34. Worried June 12, 2015 at 8:07 am Reply

    Franco, it is very difficult to pinpoint Cipro floxing if you don’t have more than one symptom, and there is no test for it. I got peripheral neuropathy as well as tendonitis on the third day of taking it, and it significantly worsened within a half hour of taking the last pill I took. Many people wind up with multiple symptoms after taking a fluoroquinolone, so it is usually pretty clear that they were floxed. I know for a fact that those symptoms came directly from my cipro use. There’s not really any way for you to know for sure, but to be safe I’d stay away from any fluoroquinolones in the future.

  35. kris t June 13, 2015 at 10:57 am Reply

    Tyson, Let us know on this forum how you do with the Idebenone, I am interested to hear as I am going through some of your same issues. Kris

  36. kris t June 14, 2015 at 10:08 am Reply

    Lisa, do you know if you can take estrogen while you are floxing? Kris

  37. Ruth Young June 14, 2015 at 10:21 am Reply

    Estrogen is stimulatory. Progesterone calms things down. HRT of only one it only the other is safe with bio identical hormones. Supplementing both is not safe even with bio identical hormones.

  38. kris t June 14, 2015 at 11:01 am Reply

    Ruth, I used this cream that you do not take orally. (since this is an open forum, don’t want to get too specific, hopefully you will get the idea) Anyway, I am having all kinds of problems today, let alone it burned like hell. But I need to take something for the dryness. Any suggestions? My friend uses a hormonal cream that she rubs on her body, but I have this chronic hive problem called dermagraphism and I am afraid that could be affected by that. kris

  39. Ellen Hall June 14, 2015 at 12:18 pm Reply

    I have been taking estrogen since I was 37 and had a hysterectomy. I am 73, only take a low dose now. I do not have a gallbladder either, or a family history of breast cancer.

  40. kris t June 14, 2015 at 12:20 pm Reply

    Ellen, were you taking it when you were de-floxing, or after taking Cipro? Kris

  41. Ruth Young June 14, 2015 at 4:13 pm Reply

    Kris,
    I never did the cream for HRT. I just take pills. So I don’t know what to tell you. I used coconut oil on my skin for dryness when it was really bad.
    Ruth

  42. Tyson June 14, 2015 at 4:15 pm Reply

    Kris t,

    I will definitely let you how the Idebenone works for me, I really hope its safe. I cant find much information on it. I did get the Purple Rice and it seemed to help my anxiety right away. It really calmed me down. I don’t know if I was just coming around on a good “window” or if it was the rice. Seems really weird but its helping. I feel tired and sluggish after taking the rice but I’m not going crazy like I usually am. I’ll continue the rice and see how it works, sucks that its so expensive.

  43. Ruth Young June 14, 2015 at 4:16 pm Reply

    Tyson,
    I think you will get used to the CalmPRT. I did. I was able to teach while taking it. I could pretty much do anything except play the organ. It blocks adrenaline and I think musicians need a certain amount of that to have that edge we need while playing. Without it, it’s just impossible. But I think once you get used to the CalmPRT you’ll be able to function just fine while taking it.
    Ruth

  44. Ruth Young June 14, 2015 at 4:21 pm Reply

    Kris,
    I’m pretty sure the Idebenone is safe. Watch out for sudden muscle weakness. That seemed to be the only side effect, other than increasing insomnia and anxiety, and it seems like the muscle breakdown only happens for women on the back side of middle age. I hope to God it never happens to me, because that stuff is like my lifeline. It is the best thing I ever found for treating my depression, plus the antioxidant working even without oxygen is a plus. I did find a year long study with Idebenone that did show it is safe to take long term. It was for Parkinson Disease. Idebenone didn’t help that, but at least it showed it was safe.

    The rice isn’t really any more than MitoQ once you get past the loading dose phase, so I just switched over to it. I trust something natural more for long term use. It does seem like it has given me more stamina, so I hope you will feel that as well over time.
    Ruth

  45. kris t June 14, 2015 at 4:40 pm Reply

    How much is it? Do you fix it like regular rice with boiling water? Kris

  46. kris t June 14, 2015 at 4:44 pm Reply

    Ruth, but my problem is the fact that my muscles are already weakened due to the Cipro which is why I am in PT right now, trying to fix the problem. All the muscles in my back, shoulder and neck were effected, because I lifted something heavy at work. Today was a bad day, but maybe tomorrow will be better. I have to use a heating pad on my back every night. Kris

  47. Tyson June 14, 2015 at 6:40 pm Reply

    Kris t,

    The rice is a fine powder that you mix with water, really easy. It was $150 for the first order (lasts 1 month), which is crazy expensive for rice…but I will pay anything to make myself feel better. Call Kare at (740) 798-8764 to order it. She can explain everything in much further detail. Don’t feel like you have to spend that kind of money though. Again, I’m not sure if it was the rice that decreased my anxiety or if I was going through a normal window…but I’m almost positive it was the rice because right before I took it I was a mess and then after I took it, I felt better.

    Ruth,

    Did you say the Idebenone can cause insomnia?? Because that’s the last thing I need right now. Also, did you say in another post that Idebenone and MitoQ healed your tendons? I have both products on order and I’m hoping that I can get the same results. Any tips on how to take them?

    Thanks

    • Ruth Young June 14, 2015 at 7:58 pm Reply

      Idebenone has the same side effect profile as the SSRI’s in that insomnia and increased anxiety are listed as possible side effects. I have no side effects at all from it. I am convinced its positive effect on brain chemistry is real because reading about those side effects scared me. I was in a terrible state– anxiety so bad I wanted to crawl out of my own skin, not sleeping at all. But I wanted the powerful antioxidant effect. I needed to combat the oxidative stress my body was under, so I took it anyway. My oxidative stress was so high initially that eating an orange gave me a sense of euphoria. My antioxidants were probably entirely depleted. I was so ill two days after stopping the Cipro that I could barely stand upright.

      And then my tendon started to hurt and it was getting worse and worse. I started the MitoQ first and gradually my tendon was getting better. At first I thought MitoQ and Idebenone were the same thing as they were both mentioned in a research study as able to protect tendon cells from Cipro damage– in a test tube and with the cells pretreated with the antioxidant. But I was clinging to any shred of hope.

      When I discovered Idebenone as something different from MitoQ I wanted it too because it sounded like the most powerful antioxidant I’d ever heard of. I did not expect it to cure anxiety and depression for me, but it did. Within fifteen minutes of the first pill I felt better– not all the way better but functional. It made the difference between having to call in and being able to work. Over time I realized the depression I’d fought nearly every day of my life was just gone.

      The MitoQ doesn’t have the effects on brain chemistry but I went hiking a few times while on it and I was barely winded. It was way easier than I expected. I read others saying it improved athletic performance for them. I thought it was the CalmPRT because it has an adaptagen in it that athletes use to adapt to hard work outs. But I hadn’t been working out. It had to be the MitoQ. Friends were saying I had a glow they’d never seen before– I saw it too, that I just looked healthy. My nervous system is still screwed up, life is just too stimulating and even the Idebenone does not get me to zero anxiety– but I actually physically feel really good.

      I have recently dropped MitoQ, but if I had to go back and do it over I’d take it again. Because I don’t know what saved my tendon. And having my friend Don complain I was hiking up the bluff too fast for him was worth every penny.

      But I don’t like the fillers MitoQ uses, so I don’t want to take it long term.

      I think the micronized purple rice will give me similar, though probably not quite as dramatic, results while being all natural. People are reporting improved athletic performance from it as well. It is supposedly milled small enough to get into even damaged cells and help fuel the mitochondria. It’s packed with antioxidants. Since taking it my tendon completely stopped hurting even after running uphill. Could be coincidence.

      If I were fighting to save my tendon from a rupture again (I kept feeling a thin layer of cells tear) I would take MitoQ again. But at this point, just wanting to nourish my body long term, I’m going with the purple rice.

      Don’t drink grapefruit juice or too much lemon water with the MitoQ. I found a research study showing that it is most definitely one of the many things you can’t take with grapefruit juice.

    • Ruth Young June 14, 2015 at 8:07 pm Reply

      Idebenone is fat soluble. I take one 50 mg pill with each meal. I think you should start with just one pill per day– maybe with lunch– and see how it goes. I was low on serotonin long before I got floxed. You don’t want too much though. The half life is 18 hours but the serotonin boost only lasts four hours. So if you don’t tolerate the extra serotonin you won’t feel the side effects for long.

      You can take just one MitoQ and get good results. The dose is two pills, but I read a lot of people online saying they took half that and still had good results. Something to consider– makes it cheaper. Initially, I took the full dose. After my tendon got better I went down to one pill most days.

  48. Ruth Young June 14, 2015 at 7:28 pm Reply

    I suffered significant muscle loss– they just atrophied overnight. Pushing magnesium through food and supplements and spraying magnesium oil on my skin helped. It took a couple weeks and I was functional but it took several months to feel strong again. I’m at sixteen months and not as strong as I was prior to Cipro.

  49. kris t June 15, 2015 at 6:25 am Reply

    Ruth, did you take the MitoQ for depression or tendon pain? Kris

    • Ruth Young June 15, 2015 at 4:08 pm Reply

      I took both MitoQ and Idebenone to try to save my tendon. It was only the Idebenone that I got the pleasant surprise that it also is good for promoting positive brain chemistry. MitoQ is just a targeted form of ubiquonal. Idebenone is the one that does much more for your brain as well as being an amazing antioxidant, even protecting in situations where there is low or no oxygen.

  50. Tyson June 15, 2015 at 7:57 am Reply

    Ruth,

    How much L-Tryptophan were you taking at night? Also, what version of Vitamin C were you taking? Hopefully these will be my last questions for you haha.

    Thank you

    • Ruth Young June 15, 2015 at 4:10 pm Reply

      I take one tryptophan pill at night although the bottle says to take three. You don’t need much if you are taking Idebenone as it helps your body make serotonin even if there is very little tryptophan.

      I just buy a mid priced vitamin C at the grocery store. I know I could do better with that.

      • Tyson June 15, 2015 at 6:02 pm Reply

        Ruth,

        What is the mg of of tryptophan you’re taking. I just got my bottle and each pill is 1g (1000mg). Seems high to me, which is why I was curious how much you’re taking.

        thanks

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