Floxie Hope

Floxie.Hope.1800.72.dpi

This site is to give HOPE to those who are suffering from Fluoroquinolone Toxicity Syndrome as a result of being poisoned by fluoroquinolone antibiotics – Cipro, Levaquin, Avelox, Floxin, etc.  It contains stories of healing.

Cipro, Levaquin, Avelox and all other fluoroquinolones are dangerous drugs that can have devastating effects that cumulatively I’ll refer to as Fluoroquinolone Toxicity Syndrome or Floxing.  Fluoroquinolone Toxicity Syndrome/Floxing includes damage to connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more. The damage done by fluoroquinolone antibiotics can destroy a person’s quality of life or even kill them. Certainly, there is a time and a place for drugs with dangerous side effects. If you find yourself in a septic shock induced coma, fluoroquinolones may save your life. Unfortunately, these drugs are not being reserved for life or death situations. People are being prescribed them for urinary tract infections, suspected prostate infections, upper respiratory infections, as a prophylactic for travelers’ diarrhea, ear infections, pink eye, etc. Thousands of people have suffered needlessly from the devastating effects of fluoroquinolone antibiotics, when another, safer antibiotic could have, and should have, been used.

The damage done by fluoroquinolones is largely unacknowledged by the medical establishment and an accurate diagnosis, compensation and relief are difficult to come by. There is no known cure for Fluoroquinolone Toxicity Syndrome/Floxing.  However, many people continue to LIVE after being poisoned by fluroquinolones.  They find healing, recovery, perseverance, compassion and hope.  These are their stories.

This site is meant to give hope for healing to those who are adversely effected by fluoroquinolones.  It is no way meant to disregard the pain of those who are chronically suffering from the horrifying effects of Cipro, Levaquin, Avelox or the other fluoroquinolones.  There are people who don’t recover.  Their stories are real and they matter.  There are also people who are able to recover and I share their stories with the hope that they inspire others, or at least give hope that recovery is possible.

Here is a New York Times article about the dangers of fluoroquinolone antibiotics – http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_r=0 – more news stories, research papers and other resources can be found on the “Links and Resources” page.

Here is a Facebook group that is a great resource for those going through Fluoroquinolone Toxicity – https://www.facebook.com/groups/floxies/

Featured post – I’m floxed. Now what?

The Fluoroquinolone Toxicity Solution Ebook has helped many Floxies to recover, including DanielCindy and Ruth.  As a bonus, you will also receive The Floxie Food Guide – a book of diet guidelines to help you through fluoroquinolone toxicity:

flu tox get help you need banner click lisa

 

 

 

15,883 thoughts on “Floxie Hope

  1. janna marsh March 15, 2017 at 7:27 pm Reply

    I posted on here less than a month ago. I only took two Cipro but quickly experienced trouble. I already have tendinitis in my left knee for about 6 years now. I also have fibromyalgia for 18 years now. The fibro alone keeps me unable to function normally. Now this on top of it. I also suffer with IBS with diarrhea, which is common with fibro. I have read a lot on this site and I’m trying different things that seemed to help others. I’m finding that the cost of everything is something I just can’t do. I am on a good probiotic. I’m taking magnesium glycinate every day. I’m soaking my feet in Epsom salts nightly. I’m also applying magnesium oil twice daily to the bottom of my feet and anywhere that is sore. I am taking 600mg of the magnesium daily. Combined with my IBS, I’m basically in the bathroom all day. Is there any way to know if you are getting too much magnesium? I’ve been told it can be dangerous to take too much. I don’t know if my size matters? Unfortunately, it is difficult to tell if the pain I feel is from the floxing or my fibro. Many of the new pains, I can tell. My wrists, knees, ankles, Achilles, and top of my feet are the worst. Any help is appreciated!

    • Jane April 1, 2017 at 3:03 pm Reply

      Janna I am not an expert in this but wondered if you are in a constant state of detox due to the amount of magnesium you are taking in various forms? It is just a thought.

    • caws April 9, 2017 at 6:18 am Reply

      As a 27 yr veteran of Cipro, Levaquin & Gemifloxin poisoning ; I would suggest lowering your internal Mg dose but stick to the Mg oil & epsom salts. Also for relief of pain go to http://www.kratomworks.com & get some premium Green Bali Kratom . One teaspoon [or you can put it in empty gel caps=5 /00 caps] every 6 hrs; took me from totally incapacitated to walking my dog two miles a day & I’m 64 & had 19 surgeries in last 10 years.
      Contrary to what DEA & FDA would have you believe; I have NEVER gotten any kind of high from it, allergic reaction or other side effect & I have CFS/FM/ MCS,insomnia, & celiacs w/ malabsorption. Also just diagnosed with LYME & BABESIA which I think has been exacerbated by the FQs & metals in my body. Many are finding out these stealth diseases are piggybacking onto our compromised immune systems. Currently on Stephen Buhner’s intensive herbal protocol which unlike mainstream medicane [doxycycline & IV antibioitcs] focuses on reducing inflammation & rebuilding immune system in addition to killing the little buggers. http://Www.spooky2.com, rife machine has been a lifesaver for me as well. Extremely affordable & the Maserati of rife machines. Not affiliated with any companies.
      Hydroxy /adenosol B-12 have helped tremendously for the peripheral neuropathy especially if you have MTHFR gene. Regular cyanocobalamin or methylcobalamin [oral or injection] did not work for me. One was not enough the other caused a backlash. I get them from Dr. Amy Yasko at http://www.holisticheal.com. It is a sublingual spray called Get B12 for $29. I take it as needed . It also helps with brain fog as does sublingual methyl folate.
      NEVER GIVE UP & TRY TO LEARN SOMETHING NEW EVERY DAY!

      • L April 9, 2017 at 8:31 am Reply

        HI, I was a little confused in one paragraph…was the Hydroxy /adenosol B-12 you mentioned the same as the get b12 sublingual spray? also curious if your PN was more pain, or numbness/tingling. thanks

  2. Michael Teeter March 15, 2017 at 9:57 pm Reply

    Hello Janna, I am sorry to hear that you have been floxed. You do sound like you are taking a lot of Magnesium. I to take quite a bit but I suffer from malabsorbtion from my adult autoimmune enteropathy I also have fibromyalgia and I have been floxed for 5 plus years now. My suggestions as a fellow floxie are as follows. Doctors recommend that you take malic acid along with your magnesium if you have Fibro. It is not that expensive you can order it from swanson or some other company. I would ask my doctor to have a Magnesium level blood test or a complete blood panel. You can see your level that way.
    I see a Natural Doctor and an Acupuncturist. As well as all my other doctors. These two are worth their weight in gold.
    What area do you reside? I am in Michigan myself.
    Here is my Natural Doctor’s website.
    He has a lot of free information and articles. He does a 10 minute free consultation and he has an online dispensary that you can order supplements from him. http://naturopathic.doctor/

    I am not a doctor but he is. Give him a call.

  3. Michael Teeter March 15, 2017 at 10:36 pm Reply

    I am sorry everyone I had a real bad month in Feb I had a bad relapse and I was down to 114 pounds. I am now up in the 140s now. I had to get back on steroids again. I now and seeing two new Chiropractors out of Greenville Michigan and they know of Floxing and that is where I met my new acupuncturist Tao He. I am now taking traditional Chinese herbal meds and diet along with cupping and acupuncture.My Natural Doctor, Doctor Morgan has helped me start CBD Oil and I have noticed an improvement. I also started IV therapy Again. So hopefully I will recover my health again.
    My GI specialist from Cleveland Clinic had me go to the University of Michigan Hospital to help treat my Adult Autoimmune Enteropathy closer to home. They theorize that it was caused or brought out by the Floxing from Levaquin and Cipro 5 years ago triggering an Autoimmune response. More test.

    http://naturopathic.doctor/

    http://www.thegreenvillechiropractor.com/

    https://www.yelp.com/biz/tao-he-comstock

    • Jeremy March 16, 2017 at 4:45 am Reply

      I guess it’s necessary for you to take steroides? Does this steroid have fluoride compound? All the best!

      • Michael Teeter March 16, 2017 at 8:10 am Reply

        Currently I am taking prednisone 25mg and I have been on it for 5 years. I have been down as low as 5mg. I am also taking Entocort (Budesonide Dr 3Mg) to hopefully replace the Prednisone.
        I do not think it has a fluoride compound. I do have it listed that I am highly allergic to fluoride.

        https://en.wikipedia.org/wiki/Prednisone

        https://en.wikipedia.org/wiki/Budesonide

        That is the medical Doctor’s take on that. Whether I need to take steroids that is all a matter of medical opinion and we all know how many of those are out there!
        But I have a a severe auto immune response after the floxing Reactive arthritis tendonitis, tendonosis, vertigo, migraines, facial recognition problems, finally Adult Autoimmune Enteropathy.

        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2690661/

        So the regular doc use the immunosuppressants and the steroids to suppress my attacks and combat the malabsorption and dehydration I get with it.
        My holistic and natural docs focus more on the nutritional end and diet.
        I am hoping that the CBD oil I started taking may replace the steroids entirely.
        I have noticed using my RIFE machine and seeing the acupuncturist seems to help the most.

        All the best to you to Jeremy.

    • Jeremy March 16, 2017 at 4:44 am Reply

      Thanks for the link, Michael. Wish you all the best on your recovery!

  4. Michael Teeter March 16, 2017 at 8:16 am Reply

    http://www.painmanagementsolutionsinc.com/abdrkim.html
    David Kim can help Floxies. he is located in Maryland. I talked to him personally.
    here is his contact info.
    Address: 1412 Crain Hwy N #7a, Glen Burnie, MD 21061
    Phone: (410) 761-2988

    • Michael Teeter March 16, 2017 at 8:17 am Reply

      That website may be another mr. Kim he looks like he know his stuff also. 🙂

  5. Michael Teeter March 16, 2017 at 8:20 am Reply

    http://www.eisenhowercenter.com/
    In Ann Arbor, MI The Neurofeedback and TBI looks promising for helping Floxies recover. I may take some training in that.
    Biofeedback, PEMF devices, and RIFE machines look effective to me. I should get licensed and learn acupuncture.

    • L March 16, 2017 at 9:31 am Reply

      While most of my healing came from my NDs and IVs, I did get some help from acupuncture, especially in dealing with pain and inflammation. Good luck with that—and I would encourage you to train in acupuncture.

      • Barbara Arnold March 17, 2017 at 12:05 am Reply

        Hi L,
        Can you tell me how many sessions you had with accupunture before it helped with pain ? I have had five so far but I still have a lot of burning in my lower legs and feet. It has been successful helping me with weight loss as I piled on the pounds after cipro. So I am hoping it will eventually help with pain. Did your accupunturist do anything special ? Mine is Chinese and trained for seven years, so I am hopeful.
        Thanks, Barbara

        • L March 17, 2017 at 10:00 am

          Barbara, I had pelvic area pain and usually it went it away the day of treatment. Sometimes there was a heavy pressure instead of the pain and for that he used a Chinese Herbal mixture. That would take several days to dissipate. The absolute worst pain I had was mid back—just horrific, deep in the bone. The worst pain I had ever experienced and I have had cracked ribs. That went away once I started IVs. I was getting a couple different kinds so I am not sure which on helped.

        • Michael Teeter March 23, 2017 at 5:14 am

          Barbara,
          It all depends on the individual and also the acupuncturist you are seeing. My first acupuncturist took a more traditional holistic approach and it wasn’t until my 3rd treatment that I felt real relief. The second acupuncturist I went to did the whole traditional Chinese Medicine approach, needles, electric stimulation, herbs, cupping the whole ball of wax. I felt immediate relief.
          Here is a site you may want read.
          https://nccih.nih.gov/health/whatiscam/chinesemed.htm

      • Jane April 1, 2017 at 4:29 pm Reply

        L I found this and wondered if anyone here had heard of this. It is a test for lupus.

        https://www.google.co.uk/search?q=animith+antibody&ie=&oe=#q=anti+smith+antibody&*&spf=181

        • L April 1, 2017 at 4:33 pm

          I had not seen that, but many of us who get floxed are tested for auto immune diseases because the doctors cannot BELIEVE that cipro, levaquin, etc could possibly cause all this. of course most of the time the tests come back negative.

  6. Michael Teeter March 16, 2017 at 8:22 am Reply

    Finally Doctor David P. Nebbling is a Doctor of Osteopathic Medicine.
    He is a DO out of Lansing. He helps Floxies and I got some Amino Acid IV’s from him.
    He has all sorts of cool tools in his place.
    His number is 517-323-1833
    website is AdvancedOsteopathicHealth.com

  7. Jeremy March 16, 2017 at 11:42 am Reply

    Dear All, I wonder what would be your advice for this:

    In around a year I need to travel to China for a months. It’s strongly recommended to get vaccination for hepatitis A and B, because hazard is relatively high in compare to Europe. I will need to eat food there and use water there for month or longer.

    I’m afrad of the adverse reaction. I was floxed in 2015, however my posioning was relatively mild. Nevertheless, I was floxed and thing is still active, I know that because recently had another adverse reaction after fluconazole (antifungal).

    Here’s the double shot I was thinking to take:
    Twinrix – Combined hepatitis A and hepatitis B vaccine
    http://www.twinrix.ca/media/pdf/ConsumerLeaflet_English.pdf

    No fluorid inside, however soidum chloride is present.

    Please share your thoughts and experience. Thank you.

    • L March 16, 2017 at 1:42 pm Reply

      You know, this is something I have wondered about…what would I do if I had to get a vaccine? I no longer get flu vaccines and I will avoid all others at any cost. My advice would be to talk to an ND you trust, especially one familiar with FLQ toxicity. (At the very least one familiar with Lyme since many of the treatments are the same.) Perhaps they can advice you on how to minimize any risks.

    • Lisa March 16, 2017 at 2:45 pm Reply

      It’s a tough call. I’m not sure what I would do in your situation. According to the CDC, “Hepatitis A is a liver infection caused by the Hepatitis A virus (HAV). Hepatitis A is highly contagious. It is usually transmitted by the fecal-oral route, either through person-to-person contact or consumption of contaminated food or water. Hepatitis A is a self-limited disease that does not result in chronic infection. More than 80% of adults with Hepatitis A have symptoms but the majority of children do not have symptoms or have an unrecognized infection. Antibodies produced in response to Hepatitis A last for life and protect against reinfection. The best way to prevent Hepatitis A is by getting vaccinated.” Since hepatitis A is highly contagious, getting vaccinated may be a good idea. However, since it isn’t chronic, it may not be a horrible thing to risk getting. I don’t know – I’ve never had hep A. I would probably get the hep a vaccination.

      Also according to the CDC, “Hepatitis B is a liver infection caused by the Hepatitis B virus (HBV). Hepatitis B is transmitted when blood, semen, or another body fluid from a person infected with the Hepatitis B virus enters the body of someone who is not infected. This can happen through sexual contact; sharing needles, syringes, or other drug-injection equipment; or from mother to baby at birth. For some people, hepatitis B is an acute, or short-term, illness but for others, it can become a long-term, chronic infection. Risk for chronic infection is related to age at infection: approximately 90% of infected infants become chronically infected, compared with 2%–6% of adults. Chronic Hepatitis B can lead to serious health issues, like cirrhosis or liver cancer. The best way to prevent Hepatitis B is by getting vaccinated.” If you’re not going to do any of those high-risk activities, I don’t think that there is any reason to get the hep b vaccine. Personally, I regret getting it. I think it’s unnecessary for most of the population – myself included.

      Regards,
      Lisa

      • Jeremy March 17, 2017 at 10:29 am Reply

        Dear Lisa, thank you very much for developing my post with more precise information. I appreciate.

        It’s a very tough call, and here’s why: in China I will be taking therapy which involves needles (Hepatitis B risk) and will be eating chinese food for a month (Hepatitis A risk). However, clinic is on very high development level, prepared for international patients. and I will live in 4 stars hotel.

        Twinrix vaccine is always 3 shots. First shot would show reaction, of course.

        Indee, finding a German doctor who acknowlege FQ toxicity and consult would be best, but this is not easy.

        Greetings!

        • Bob March 17, 2017 at 10:41 am

          Why should there be a Hep b risk from acupuncture? They use new needles and throw them away when they are done.

        • Jeremy March 17, 2017 at 10:49 am

          I did not write anything about acupuncture, I will get intravenous injections and intraorgan injections. Still, you are right Bob, they will always use new needles.

        • Lisa March 18, 2017 at 10:39 am

          Jeremy, regarding your statement of, “First shot would show reaction, of course.” I’m not sure that’s true. Just like fluoroquinolone reactions have a cumulative aspect to them, vaccine adverse reactions do too. Of course, it’s your decision and you should make the decision using as much information and knowledge of your body as you can. Possible cumulative reactions and overloading your immune system are parts of the equation that should be considered.

        • L March 18, 2017 at 11:15 am

          Yeah, I was thinking the same thing, Lisa, about first shot not necessarily showing a reaction. I would also add that if one is thinking about getting these shots, it might be a good idea to try to find a way to minimize any possible reaction. In Dr Jay Cohen’s book on fluoroquinolones he suggests that if one HAS to take them, it would be a good idea to take magnesium 4 hours away, as well as vitamin E and also possibly supplementing with 10-15 mg zinc and NAC.

        • L March 18, 2017 at 11:17 am

          Those comments were referring to supplement use with FLQs not the shots mentioned, but might be worth a try

        • Jeremy March 25, 2017 at 4:02 am

          Thank you Lisa and L for your precious input. Indeed I need to think about possible cumulative aspect of vaccines .

          I still have some time to decide and can prepare myself, however my gut feeling is that I don’t want to intruduce another risky substance to my body. Tough call, one month in China with everyday threathment. I will keep you posted. Bless you!

    • Michael Teeter March 18, 2017 at 9:04 am Reply

      That is a very good question! It is pretty much your call. It looks like that may be safe enough if I was in your situation. Me personally I avoid vaccines as much as I can because of my Auto Immune disorder. Just FYI if you know someone who has a RIFE Machine there are settings for after a vaccination or injection that helps with adverse reactions.
      I also take detox supplements and run detox settings. maybe run the hepatitis settings.
      As far as China, first of all I am jealous! I always wanted to visit. Check out the food ranger on youtube he is awesome and can help you find safe places to eat in the country.

      I think for water I would use a lifestraw or bobble water bottle filter just to be safe and maybe buy bottle water then run it through my filter. Something like this.
      http://www.esafetysupplies.com/Sawyer-Mini-Water-Filter.html?gclid=CjwKEAjwtbPGBRDhoLaqn6HknWsSJABR-o5sfgnmy_lNb5MloYvnoLdhtm8__tWMGq9MzwfLhcj75BoC1xnw_wcB

      http://www.staples.com/Bobble-Water-Bottle-With-Carry-Tether-Cap-Medium-Lime-185-oz/product_2399101?cid=PS:GooglePLAs:2399101&ci_src=17588969&ci_sku=2399101&KPID=2399101&cvosrc=PLA.google-SALES.Bags%20%26%20Briefcases&cvo_crid=39357178182&cvo_campaign=173090982&gclid=CjwKEAjwtbPGBRDhoLaqn6HknWsSJABR-o5scyOsM5eRy50dYJP83UtwfDa7-GdoLagWo22a74eNWxoCWBDw_wcB

      here is an article you may want to read.
      http://www.china-family-adventure.com/health-and-safety-in-china.html

      I wish the best! happy Travels.

      • Jeremy March 25, 2017 at 4:10 am Reply

        Michael, thank you very much for your words and for your tips and links! I even can’t explain how I appreciate your input! I’m puting all this info into my notes.

        Wish you all the best for your recovery! Stay strong!

  8. Brian March 16, 2017 at 5:02 pm Reply

    Hi, I’m back with a question about the insomnia. It’s been three weeks and I’m still having a lot of trouble sleeping. I’ve been see a psychiatrist (who doesn’t believe that cipros are harmful) and he’s prescribed Ambien. It helps a little bit but not much. Now he’s prescribed Trazadone. Anyone have experience with that med?

    Also, what kinds of time frames have people been seeing in terms of the insomnia improving? I took a total of 5 pills (2500 mg) over 2 days.

    Thank you

    • Brian March 16, 2017 at 5:04 pm Reply

      Sorry, I should have said three days

      • Bob March 17, 2017 at 11:12 am Reply

        Have you tried melatonin and GABA?

        • Brian March 17, 2017 at 12:56 pm

          Hi Bob,

          Yes, I tried melatonin and various dosages including the time release formula. I tried GABA early on and it made me euphoric for a short period of time but didn’t seem to promote sleep. What kind of duration (if you don’t still have it) was your insomnia?

        • Bob March 17, 2017 at 2:15 pm

          Early on it lasted for several weeks but I still have spells of waking up in the middle of the night and not able to go back to sleep. I was floxed almost 4 years ago. Everyone is different with regard to recovery.

        • Heather March 24, 2017 at 6:33 pm

          Hello Bob! I thought I was the only one exsperienced my symptoms after four years still the same awful. Insomnia is awful with muscle twitching and tremors!Been to all types of docs! Please get back with me my email is niner769@gmail.com.

    • L March 16, 2017 at 5:07 pm Reply

      You need to find another doctor. And tell him about Dr Jay Cohen’s book (he was a psychiatrist too) “How We Can Halt the Cipro and Levaquin Catastrophe: The Worst Medication Disaster in US History.” Your doctor is woefully uninformed. (He could at the very LEAST look at the drug label.) This makes me furious.

    • Jeremy March 17, 2017 at 11:42 am Reply

      Also you can try the natural remedy: Valeriana officinalis. You can buy capsules with Valerian root (500mg) and take 2 before sleep. When you wake up in the middle of the night you can take 1 more.

      It’s natural and not addictive. Was helpful for me, however as far as I know for some works better than for others. Best!

      • Brian March 17, 2017 at 1:03 pm Reply

        Hi Jeremy,

        What brand are you using?

        • Jeremy March 17, 2017 at 1:39 pm

          Both Swanson 475mg and Now Foods 500mg worked good for me. Both are genuine, I can smell the real Valeriana officinalis, because the smell is very specific. Buy a smallest package and give it a try. The good thing is that it’s a very healthy sleep promotor. I hope that will help you!

      • Brian March 17, 2017 at 1:47 pm Reply

        Ok I will look for those. If you don’t mind saying, how long did your insomnia issues last for?

        • Jeremy March 17, 2017 at 1:55 pm

          I think I didn’t have real insomnia – as i understand it’s a total lack od sleep, right?

          For a 5-6 weeks I had (1) real trouble with falling a sleep and (2) was waking up after 4-5 hours and couldn’t sleep anymore.

          Please take this into consideration. Valeriana might be a not sufficient solution for you, however it is in use since Middle Ages not without a reason. Good luck!

    • jwinn April 5, 2017 at 12:48 pm Reply

      Hi Brian. I have taken Ambien for 10 years now. It helps some, but it is definitely better than NO Sleep. I also take 5 mg Melatonin with it. The past few months I have also added Melissa Lemon Balm and it has helped! It is worth a try. I got mine from Amazon. I hope this helps!

  9. Brian March 18, 2017 at 6:21 am Reply

    Sorry but I have another question for you all. I have noticed over the last week or so my stool has been green and loose but not diarrhea. No abdominal pain but I’m hearing a lot of noise in my gut. Kind of worried it’s C. Diff but I don’t seem to have all of the symptoms. Wondering if it’s a combination of stress, gut issues from the Cipro, etc.

    I’m going for a physical on Monday morning and will let them know.

    Anyone have any insight on this?

    • Lisa March 18, 2017 at 9:29 am Reply

      Hi Brian,

      Definitely get checked out. Are you taking magnesium supplements? They can make stools loose. It may be worth a try to stop taking magnesium for a few days to see if that helps. Cipro, and the gut destruction it causes, can certainly contribute to GI problems. Stress may be a contributor as well. My main advice is to get checked for c diff and look at your supplements to see if they may be causing issues.

      Regards,
      Lisa

    • L March 18, 2017 at 9:53 am Reply

      This is stuff is so toxic on the gut. My stool at one point was almost white. I had diaharrea for over a year, and for the last year somewhere in between that and normal. Make sure you are getting a good multi-strained probiotic (the kind you refrigerate) and it also helpful to eat fermented foods (I put goat’s milk kefir in smoothies.) Avoid gluten and gmos. Another helpful addition is something called RESTORE mineral supplement. If you are supplementing with magnesium, avoid the citrate form.

      • Jane April 17, 2017 at 7:03 am Reply

        L
        Sometimes the binders and fillers in meds /supplements especially mannitol, sorbitol, aspartame, gluten, maize starch/corn .lactose, fructose can cause diarrhoea.

    • Brian March 18, 2017 at 4:25 pm Reply

      So if it turns out to be c. diff then are you stuck with Flagyl as the only treatment option?

      • Stephanie March 18, 2017 at 4:38 pm Reply

        Flagyl is horrible I would not recommend it to anyone it’s part of why my spasms are so bad if you have a reaction to flqs then flagyl is not a good idea at all!!!

      • L March 18, 2017 at 5:01 pm Reply

        Check with an naturopath. I have read about other options besides antibiotics for C diff (and again ALL antibiotics effect healthy gut bacteria, so more problems there)

      • Deborah March 20, 2017 at 6:06 am Reply

        Vancomycin

  10. Michael Teeter March 18, 2017 at 9:10 am Reply

    Hello Everyone my health is coming around! I am walking better but I always carry a cane.
    Ever Gentleman should right! I actually gave a part at my congregation and stood up at the podium for it. I have not been able to stand on the stage for 5 years! So this is Awesome. maybe I will be a recovery story soon , eh Lisa.
    Anyway. I have been doing water therapy and I joined a gym with my awesome wife. I am following the advice of my Natural Doctor. Dr, Morgan and my Acupuncturist Tao He and I think this has been helping me the most.
    I still have my regular doctors I see two GI specialist now 1 in Cleveland Clinic and 1 at the University of Michigan.
    My PCP is a dink and I think I am going to fire him.
    I also use my RIFE Machine regularly.
    I just wanted to share. I am getting ready for fishing this year! So look out for catch and cook videos on youtube real soon. I love you all and look for a day when all of us on here are not sick anymore.
    I wish you all the best.
    Mike Out

    • Lisa March 18, 2017 at 9:26 am Reply

      That’s amazing! YOU’RE AMAZING! Great job, Mike! I know this journey has had a lot of ups and downs for you. Your spirit and optimism have always been incredibly inspirational. Thank you for sharing! xoxo

  11. L March 18, 2017 at 9:55 am Reply

    and good you are close to the Cleveland Clinic…they are integrative. Not your standard AMA “health” clinic.

    • Michael Teeter March 23, 2017 at 5:24 am Reply

      I live 5 1/2 hours away from Cleveland Clinic. So it is a journey when I do go, I was seeing specialist when I went there. They never brought the integrative or functional medical folks on board but they were a lot more open to my holistic approach.
      I am now going to the University of Michigan. Seeing a GI specialist there. She ordered a bunch of tests and I just had a CT and enterography scan the other day. I think the barium and contrast they gave me, triggered a GI issue. But I think I am doing better now.
      They all need to rule out cancer with me so they can sleep at night.
      I also see my Natural Doctor in Lansing and I see my acupuncturist and internist in Grand Rapids. In case you folks were wondering I live in Michigan.
      I can see a lot of improvement since I started CBD oil under my Natural Doctor and I started Chinese Medicine under my Acupuncturist.
      I just got to step off this Prednisone wiith out causing severe diarrhea!

      Well I wish you all good health.
      Michael

      • L April 1, 2017 at 4:41 pm Reply

        wow—Grand Rapids! I remember going there in the summer as I kid (I grew up outside of Chicago.) ANyhow, prednisone is nasty stuff in the healthiest people and really toxic to floxies. It exacerbates the side effects. (I was severely floxed and believe it was because I was given prednisone at the same time.) SO, yes the sooner you leave that behind the better.

        • Tara Tumilty April 1, 2017 at 6:58 pm

          I had never had prednisone before, but an incompetent doctor prescribed a 60mg taper for two weeks with doxy 200mg a day for sinus issues x 25 days that were anatomical- turns out he didn’t do my first surgery correctly years ago… My brain went into a state of sensory psychosis and then six months later I had the cipro and flagyl together, again, retrospectively most likely didn’t need that either. I think that’s why my floxing was more intense from a central nervous sysy perspective. My HPA axis was hit hard with the steroids and I still feel like I’m on a merry-go-round a year later!

  12. Stephanie March 19, 2017 at 4:27 pm Reply

    Hey guys thought you would be the best to ask. My fiancé is having lots of hand pain and inflammation he doesn’t want to take NSAIDS and we tried tummeric pills and those didn’t work he is not a floxie but I’m bad with figuring out what’s good for him and he would rather take a pill then cream. This is for when he is working so cbd is not an option.

    • joanneg March 19, 2017 at 9:26 pm Reply

      Hi Stephnie,

      I sure hope you’re at least doing better??

      As for your fiance’s inflammed hand, I know magnesium is an anti-inflammatory that’s why a lot of old timers would take an epsom salt bath. He could try the pills, but I would use the spray oil or soak in epsom salts. Also, a lot of us forget that just icing a couple times a day works great for inflammation. Hopefully you’ll get some more choices from others:)

      • Stephanie March 19, 2017 at 9:42 pm Reply

        Thanks Joanneg

        I will have him try that. 😜 I’m not good my spasms still increase my fiancé took me out for outside time and I’m stuck in the couch and that’s from going to lunch and running an errand where I held onto him. I just am stuck right now till I get some tests and can’t go into it all but just only have my monthly IVs till more tests can be done. I pretty much am house bound. I get to look into wheelchairs next weekend to be able to do more with less stress on my body we decided that today. But I stay positive and am lucky for my fiancé he takes care of me and loves me all through this. As bad as things are for me life can always be worse and I’m lucky for what I have

        • joanneg March 19, 2017 at 10:04 pm

          Well I’m glad you have someone who loves you so much and for how positive you’ve been through it all. Good luck in your healing and keep us posted.

        • Stephanie March 19, 2017 at 10:38 pm

          Thank you!!! Yep he has worked so hard to keep a roof over my head and food in my tummy. He says it’s why you do when you love someone.
          I’m waiting to see if I get approval for an at home eeg. Hopefully this week. Everything is wait and wait and then wait some more. Lol

          I do my best to stay positive. I have my bad days but I go back to positive. To me that’s all that counts. Think e all have bad times and our cry days I know I do but I always come back to positive and thankful 💖💖

    • Michael Teeter March 23, 2017 at 5:30 am Reply

      Hey Stephanie,
      I too can not take NSAID’s ever since my perforation. I found these two products helped me. Pain-Eze and Serrapeptase.
      https://www.walgreens.com/store/c/rainbow-light-pain-eze-tablets/ID=prod6310782-product?ext=gooPLA_-_All_Products&pla&adtype=pla&kpid=sku6262353&sst=150719e1-db5a-48cd-835f-b1a3f3b92e35
      The one use poppy seed and the other is an enzyme that works very well.

      • Stephanie March 23, 2017 at 7:33 am Reply

        Thank you

  13. joanneg March 19, 2017 at 9:16 pm Reply

    I thought this was interesting and maybe helpful in organizing a supplement plan. But I wonder why magnesium isn’t on their list?? Anyhow, I just wanted you all to be able to read it.

    CIPROFLOXACIN (Cipro®, Ciloxan®)
    Ciprofloxacin is an antibacterial agent used to treat infections of the urinary tract, lower respiratory tract, sinuses, and other parts of the body.

    Which Nutrients Are Robbed
    Taking this medicine may deplete your supply of, increase your need for, or interfere with the activity of:

    biotin
    inositol
    thiamin
    riboflavin
    niacin
    vitamin B6
    vitamin B12
    vitamin K
    zinc
    Bifidobacteria bifidum
    Lactobacillus acidophilus.
    Restoring the Nutrient Balance
    Speak to your physician about taking 500-1000 mcg of biotin, 250-1000 mg of inositol, 25-200 mg of thiamin, 25-100 mg of riboflavin, 50-100 mg of niacin, 100 mg of vitamin B6, 500-1000 mcg of vitamin B12, 1-10 mg of vitamin K, 50-100 mg of zinc, 15 billion live Bifidobacteria bifidum organisms, and 15 billion live Lactobacillus acidophilus organisms. You can also eat foods that contain the depleted nutrients. https://www.integrativepsychiatry.net/preventing_pharmaceutical_induced_nutritional_deficiencies.html

  14. Steff March 20, 2017 at 9:15 am Reply

    Hi everyone, I’ve taken cipro a few times but realised I was floxed the last two to three times (I don’t want to go in all the details as it horrifies me but it is in the past so be it!), the last time where the bomb from hell went off in my body actually helped me to put together all the pieces of what the hell has been happening over the last 6 months. I’m almost 4 weeks out since last flox and experiencing various levels of hell but now I am much more educated now about how to take charge of my health and I am doing so!

    We are all really going through the most difficult thing I feel we will ever experience but this experience will truly shape us into better, stronger and more educated people. I feel like this is SUCH a painful lesson but already I have reshaped so many views on health, life and what is really important! Anyway I wanted to make a post for two reasons, 1. If anyone is feeling extremely alone and just needs another mind to chat to via email, to talk about symptoms, discuss treatments they’ve tried and generally just need moral support you could email me at stefflets1@gmail.com. I will try to respond as often as possible. I can’t make any promises but I would like to keep a conversation focused on being positive or proactive and getting through our daily struggles. I’m just putting it out there because thankfully I have my partner and my father who are being great ears to my issues but some of you don’t have that, and it would also be good to give my loved ones a break. There is only so much they can understand or comprehend of this madness. Also note: This is a great website and I am thankful for the positive things people have written and that this feels like a good support network. It really gives us hope! BUT dont spend too much time on here, it can make your anxiety levels go berserk!

    2. I have been suffering from a UTI (definite infection) for almost 2 months and as I got floxed recently I had total panic and tried to avoid antibiotics that my doctors have prescribed. I know alot of people here have become very anti-antibiotic. I tried to treat my UTI aggressively with natural methods and it just wouldnt budge, or would slightly disappear and come back. So now I am on Keflex which I think is working fine, and I have been on it for 2 days now without any adverse reactions. Yes I am nervous, as Bactrim caused an FQ reaction in me previously which I didnt fully understand, I don’t want to take anymore pharma medicines but in this case I really felt it was needed, and by avoiding the antibiotic I became EXTREMELY ill and pushing through the pain to the point where I was in total agony and was not able to sleep barely any hours per night. I realised this is not helpful at all, as sleep is really important for us to heal! I am now equipped with many natural supplements to prevent reinfection and high strength womens probiotics to support flora as well when the course is finished. We are in a hard place due to the FQs affects on our bodies but just try to make the best decision for yourself, and get your body supported by good diet and natural therapies to help prevent reinfection later. Really work on making sure you are in the best opportunity to avoid future illnesses so there are no needs to take these antibiotic medicines again. Only now did I start to be aware of my own patterns and how I was putting myself into these situations where I was getting extremely sick, leading to take the antibiotics.

    Thanks
    Steff

  15. holly March 20, 2017 at 1:32 pm Reply

    Hi everyone- Can you please tell me how long it took your brain fog/confusion to go away post flox? Thank you.

    • Garry March 22, 2017 at 8:56 pm Reply

      Hi Holly, It’s been 4 months and the brain fog and associated nausea and pain recurs very quickly unless I take a regular (3 times a day) intervention combination dose of 400mg IP6 / 110mg Inositol (2 pills) and 250 mg CDP Choline (1 pill Citidine). Both together increase acetylcholine levels in the brain to create clarity for me. The Citidine also breaks down into uridine in the brain which is a nootropic and neuroprotective especially if also taking fish oils. I take many supplements but this is my magic combo for clarity. As always do the research and consult with your health practitioner before embarking on new supplements to be sure it’s right for you.

      • Garry March 22, 2017 at 9:07 pm Reply

        These are to be taken on an empty stomach and definitely without magnesium or other minerals, otherwise the inositol binds to the minerals rendering both useless. I take my minerals 1hour before or 1 hour after. Haven’t totally optimized the timing, but seems to work ok. Also N-Acetyl-L-Carnitine helps me feel more clear too, 500mg 3x a day. I take this one with my meals.

        • holly April 6, 2017 at 12:55 pm

          Thank you, Gary. I will give it a shot.

        • Garry April 10, 2017 at 8:56 pm

          Hi Holly, I also found that taking lemon juice in water seems to be part of the puzzle too.

    • Michael Teeter March 23, 2017 at 5:39 am Reply

      3 months for me. I had Brain Fog and my facial recognition was all messed.

  16. Deborah Gnegy March 22, 2017 at 12:22 pm Reply

    I am 53. How can I learn if my joint issues are related to taking Levaquin and Cipro in my 30s for ENT infections. I recall reporting joint fatigue and achiness during a repeat round of Levaquin and it was never prescribed for me again. I have had 11 joint surgeries since and I’m currently recovering from a hip revision. The surgeon commented that I’m “extremely flexible”. I have deveoped issues in other joints while using the walker and cane–and I prepared for surgery with gentle yoga and strength training.

    • Virginia March 29, 2017 at 1:57 pm Reply

      If your joints are extremely flexible, you might have Ehlers Danlos syndrome. It makes FQ poisoning worse.

  17. Matt March 23, 2017 at 8:57 am Reply

    Hello all, I was given a 10 day prescription for levafloxacin around Christmas. The only side effects I really had was some itching early on and some stomach pain early on. My question is, how long should I be looking for severe reactions to this poison. I’m not real happy with the prescribing doc as none of these issues were every even talked about. Ive been a mess since I’ve learned about all these issues.

    • L March 23, 2017 at 9:27 am Reply

      Hi Matt…it is different for everyone, and you may not experience anything else at all. Just to be safe, up your magnesium, probiotics, avoid gluten, gmos and fluoride. I personally had numb toes, fingers, blurred vision and tendon swelling right away….and then it got much much worse very rapidly. While there can be delayed side effects, I suspect that if those are your only complaints so far, you may not have any other problems. (also avoid any meats that could have antibiotics in them as well as NSAIDs and steroids, just to be safe)

      • Matt March 23, 2017 at 12:12 pm Reply

        Thanks for the info, like I said I’ve been an absolute wreck since reading about the side effects of these drugs. I will take your advice and increase my magnesium. Thanks again!!

        • Lisa March 23, 2017 at 3:33 pm

          Hang in there, Matt! Though I think (know) that adverse reactions to these drugs are under-reported and under-recognized, they certainly don’t happen to everyone. A friend of mine who is over 60 and has a history of thyroid and parathyroid problems recently took Cipro and was fine. I would have thought that she would be a high-risk person, but she took Cipro and didn’t seem to have any problem with it. Lots of people are fine. You’re fine. These drugs can destroy people, but they didn’t destroy you. You’re okay. Don’t be scared that you actually aren’t. You are. Now that you know the effects of fluoroquinolones, don’t take them again (unless there really are no alternatives and you are in a life-or-death situation). But, it appears that this time, for whatever reason, you weren’t affected. That’s a very good thing! Try to take your mind off of the fear and stress, as they can be damaging in themselves. Like L said, get some magnesium (most people are deficient anyhow – but you need to have proper kidney function to tolerate magnesium supplementation – just know that and beware), and try to live life in a healthy way. Take some deep breaths, and know that even if you do start to get symptoms (but you won’t – try to believe it), there are resources for you.

          Regards,
          Lisa

        • Matt March 24, 2017 at 7:23 am

          Lisa, thanks for the reply. I just happened to stumble on an article about these drug a couple days ago and realized I had taken them a few months prior, amazingly enough that night my legs started aching as did my feet, I think most of which was caused by the anxiety I was feeling about having took the drugs. The mind really is a powerful thing. Funny thing is on the day before reading the article I was telling my wife how good I was feeling. I’ve started a new workout program that I’ve been doing for the past month and a half and finally feeling fully recovered from the pneumonia I had at Christmas. I’m hoping my anxiety subsides soon, it’s amazing how quickly things can change, felt great on Monday by Wednesday I’m having full on panic attacks. Thanks again for taking the time to reply.

        • Tara March 31, 2017 at 12:32 pm

          Hi Matt,
          I took Cipro and flagyl in October and was incredibly dizzy on it but my body crashed in December and systemic issues intensified. My worst issues are vision difficulties, brain fog, and CNS related. A lot has subsided for the most part. Some still linger. They cycle and wax and wane in severity. I too was horrified and went into a raw state of panic for weeks on end when I started to read about all the horror stories with these medications and figured out what was happening to me. I was never warned about these medications and when you read all the negativity surrounding them, it’s easy to fall into that trap of doom and anticipate the worst. I have to refrain from policing the different sites because it raises my anxiety terribly. I will check every now and again, like today, when I am feeling stronger, but I can tell you that later tonight I will probably hit a low point, symptoms will intensify, and I will have crying spells throughout the weekend because I am focused on the negatives, let my anger over what happened to me get the best of me, and wait for things to get worse! My advise to you is to stay away from the sites for awhile, as this does increase anxiety. I speak to this personally. Nobody should go through even the possibility of a regulated medication causing harm to someone, yet alone the experience. Hopefully, like Lisa said, you are safe and now know not to take this medication. I have saved a few people from these medications- including my mother recently- and helped others to put the connection together with their symptoms following these medications when the doctors kept telling them that their tests are normal and they are fine or just “anxious.” I have become too familiar with being “gas lighted” by allopathic physicians. I found a wonderful integrative MD and a supportive chiropractic team. I don’e really need chiropractic care, but they are so wonderful, positive, and encouraging- even took the time to read up on this condition- so I go to them just because it gives me hope for full healing after I’m there. I hope all continues to go well for you.

  18. Brent Strine March 24, 2017 at 12:19 pm Reply

    In 2008 I got a serious local infection after a total knee replacement. I was given an IV of Cipro for three days. I also have to take it in pill form every time I go to the Dentist. I do suffer from severe general arthritis and now am wondering if the Cipro exacerbated my symptoms.

    • L March 24, 2017 at 1:03 pm Reply

      I would suggest you not take it when you go to the dentist. (Do you have mitral valve prolapse? That is one reason why antibiotics are sometimes recommended.) It you absolutely MUST take something when seeing the dentist I would avoid ALL fluoroquinolones.

      Yes it is possible it exacerbated your symptoms. It is also possible, if you did not have arthritis before taking Cipro, that it is not even arthritis, but rather a side effect. But again, please avoid all FLQs in the future.

  19. E March 24, 2017 at 1:58 pm Reply

    Hi everyone. Im sorry Im posting here. Not sure what to do. I have neck problems from before cipro, but after cipro things have gotten worse, and I don’t blame the cipro because I have no idea if its related. My biggest problem after cipro has been my achilles tendons, so I can say for sure that cipro did damage that, I cant say for sure it did anything to my neck. So the reason im posting here is because of the pain, i have pain running down both arms and numbness in my right arm, and I have been to multiple doctors with no imagining other than a xray done, (x rays dont show nerve related issues), and no solutions or answers. My guess is its a herniated disc, maybe multiple herniations. I’m really young, only 17, and after having this trauma from being hurt by cipro, I am really scared to take any pharmaceutical pain killers. Even Tylenol scares me. I really don’t know what I’m asking, I know no one has exact answers. Im just getting no help from my doctors and its hard to keep going with this worsening pain. Ive been prescribed gabapentin and told to take Tylenol. Has anyone taken painkillers prior to floxing? Im sorry this was so long. Thanks for reading

    • L March 24, 2017 at 2:08 pm Reply

      so sorry you are having these problems, and yes it is wise at this point to not take any pharmaceuticals of over the counter pain killers. I had neck issues after cipro. It sounds like you might have a pinch nerve. If I were you I would find a trusted acupuncturist, ND or chiropracter. Personally, with the exception of a couple integrative doctors I have given up on MDs. Their answer to most things is drugs. Find an alternative practitioner.

      • E March 24, 2017 at 3:10 pm Reply

        Thank you for replying, and I understand that avoiding pharmaceuticals is a good idea, but I can’t do that forever. The pain is getting worse, and I did go to acupuncture with no relief. I think it is more than just a pinched nerve, it sounds like a compressed nerve from a herniated disc. and a big herniation at that because it affects both arms. I personally can’t function with the worsening pain, but I’m terrified to take any pain relief. I have a pain management appointment soon as well. I really do appreciate your reply I just would also like to hear from someone who has taken painkillers and been okay.

    • Bob March 24, 2017 at 3:49 pm Reply

      you need to find a doctor who can test you to see what pain med you could tolerate. It’s hard but there out there.

  20. Mark Medley March 24, 2017 at 7:15 pm Reply

    I am suffering from severe insomnia.

    Is anyone taking benzos as sleep aids?

    I can’t sleep a wink without them

    Serequel is possibility as it does not affect gaba a

    Any comments

    • Brian March 24, 2017 at 7:58 pm Reply

      I was but I’m afraid of become addicted to them. I was prescribed Ambien and Trazodone. The Trazodone works better for me but I feel groggy in the morning. Ambien made me fall asleep faster.

    • Cheri agathakis April 8, 2017 at 10:34 pm Reply

      Mark,
      I also have severe insomnia can’t sleep without zyprexa and have a lot of pressure
      In my head in back of my eyes and nose if off zyprexa . I am scared I’ll be on mess the rest of my life to sleep like a normal human being. I have been this way since Feb 2014. Thanks for sharing!

  21. Renee Blare March 25, 2017 at 9:36 pm Reply

    I believe my husband was floxed by Ciprodex by his ear specialist. He had a cholesteotoma for years before they finally reconstructed his ear canal. They treated it by periodically cleaning out his ear and treating him with Ciprodex (or Ciprofloxacin eye drops and Dexamethasone eye drops depending on what was available.). He’s had a total of 37 surgeries in his lifetime and counting. He’s had a left ankle reconstruction (rupture), 5 shoulder surgeries, left knee replacement, and numerous other joint surgeries. He also has nerve damage to both of his feet and carpal tunnel in both of his hands.
    I’ve told ALL of his doctors since day ONE that I believed the Ciprodex was the culprit (I’ve believed it since the Black Box warnings came out on the quinolones. I’m a pharmacist.). I’ve been met with a combination of scoffing, mockery, and outright denial. NOBODY will take us seriously. I’ve even gone as far as trying to get legal counsel. NOBODY will help us.
    They only keep trying to operate on him or dose him with pain killers (when we get the doctors to actually believe what’s going on.)
    We finally have a pain management doctor who believes he’s in pain now.
    My husband is a remarkable man and I admire him. He sleeps very little, but his outlook on life is amazing, even though he lives in pain.

    • L March 25, 2017 at 9:48 pm Reply

      so sorry Renee. Sadly most of us go through the gamut of disbelieving MDs. I had horrific, terrifying side effects that made me pray for death. I am better now (about 90%) thanks to an ND. In fact by the time I found him he had already treated a number of floxies. That’s not surprising given that a) most allopaths do not believe these drugs can cause so much damage and b) they have nothing to offer anyway. You might want to go next time with one or more of the “Dear Doctor” letters written by doctors who have been floxed, for doctors. Or take a copy of Dr Jay Cohen’s book. The title says it all “How We Can Halt the Cipro and Levaquin Catastrophe: The Worst Medication Disaster in U.S. History.” Or better yet find a good ND, especially one that does IVs. I know you said you are a pharmacist, so you are part of the whole allopathic community, but if I were you, I would look outside that world. There are alternatives for most injuries. EG I ended up having a torn meniscus in the knee that did a lot of “popping” post Cipro. I did not want surgery. Instead I got prolozone injections which are supposed to help it heal itself. So far so good! Your poor husband has been through so much. I highly recommend a good ND or other alternative practitioner.

    • Tara March 31, 2017 at 12:41 pm Reply

      I’m a psychologist and I keep getting, “It’s anxiety.” I recently saw a neurologist- basically the PCPs were tired of tests coming back OK so they keep making referrals to “specialists.” She had the note written before I even got in the door and I’ve now graduated to the possibility of having a “conversion disorder!” LOL! It’s so sad. Even though my vision is poor now because of these medications, “My eyes are wide open” to the relationship between doctors and Big Pharma. Without pharmaceuticals, the doctors would be useless. I’ve found a wonderful integrative doctor who knows the dangers of these medications and had treated other “floxies” in my area. He put me in contact with some of them and this has helped my healing. In fact, in the waiting area while getting an IV, I helped a woman put the connection together why her mother couldn’t get out of bed after taking Cipro when the doctor told her it was Parkinsons! For your own mental health, I’d stop looking to the allopathic doctors. They are useless at this point in time. Who wants more pills anyway?!? It’s about taking care of ourselves and allowing our bodies to heal from the reaction. Renee- what state are you in?

  22. Renee Blare March 25, 2017 at 10:17 pm Reply

    Getting him to even see another provider, alternative or otherwise is hard. He’s “burned out,” so to speak. He’s lost faith in most everybody now. I personally believe these drugs need to be yanked off the market and have for a very long time, but I’m one provider of many. My opinion doesn’t go very far. 😥

    • Stephanie March 25, 2017 at 10:23 pm Reply

      Maybe it will be easier to get him to see an alternative Dr as they would stay away from pills as the answer and try natural methods.

    • L March 25, 2017 at 11:05 pm Reply

      I completely agree with you. I hear some say there is a place for these drugs but I disagree. (If I were dying and given the choice between a fluoroquinolone or death I would face death. I could not go through the horror i went through before.) Until and unless the manufacturers can investigate a way to undo the damage these drugs do…to DNA, mitochondria, collagen and everything else, I think they need to be removed. They have destroyed so many lives..according to Dr Charles Bennett, 300,000 deaths and a million or more injuries.

      I can certainly understand your husband’s feelings. I was so burned out on seeing doctors of any kind. But I credit the ND I ended up seeing with saving my life. He was also the first one to tell me I would be OK and to (finally) let HIM worry about it.

      • Tara March 31, 2017 at 12:48 pm Reply

        Hi L! We spoke before… Here, here! I left every allopathic doctor in tears and disbelief, but my integrative MD and my chiropractic team remind me all the time that I WILL heal and that the body wants to heal itself. Give it the right ingredients and it will happen in time. We are all impatient with this because we are in pain and we want it to end. There is few things worse than going from a completely healthy person to a person in pain or who can’t see their world clearly. It’s anxiety producing and I found going to doctors to be retraumatizing over and over again. My integrative MD has a quote on his wall, “Every day holds the possibility of a miracle to happen.” When I go to the allopathic doctors, there are posters reminding me of all the bad things that can happen if I don’t take this pill or that shot or get screened for this… I went along with this mentality for 40 years and that’s how I got myself into this position. I trusted the doctors instead of listening to my inner voice that said I didn’t need those medications. In the past year, I had 6 antibiotics and steroids for sinus related issues, which ultimately I needed complex surgery for and no doctor, except the surgeon could diagnose. We only have hope right now, no crystal ball, so that is what I choose to hold on to right now!

        • L March 31, 2017 at 1:22 pm

          Yes, Tara, I too am done with allopaths. I credit a Naturopath with saving my life. I also saw an acupuncturist who also used chinese herbal medicine, and now I have an integrative MD. (He had mentioned some pharmaceutical for something, can’t even remember what now, and all I did was look at him funny and he immediately said “ok, we dont’ have to do that.” So nice to not have a doctor insisting you take some big pharma med. I am on levothyroxine for thyroid issues, and that is it. I have treated a sinus infection and flu with oil of oregano. And even though I got severely floxed because of cipro for a UTI, I have since been able to get rid of a UTI without any meds. If only I had known back then.

          While the breathing and choking sensations were the most terrifying, I get most angry over the vision changes. I had had surgery years ago so I wouldn’t have to use glasses and vision in my right eye was so clear and 20/25. now it is 20/60, full of huge floaters, horrible light sensitivity and other issues. One thing that did help some with the floater problem (and I am talking huge floaters that made it like I was looking through gauze at times) was NAC eye drops. A real hassle and gets expensive…a drop four times a day, every day for a year. But it did help some.

        • Tara March 31, 2017 at 1:26 pm

          Can I ask how old you are L?

        • L March 31, 2017 at 1:29 pm

          Early 60s but before this happened most thought I was late 40s. Incredible shape. In fact, I had toyed with the idea of being the oldest female contestant to go on American Ninja Warriors! Well, that’s not gonna happen now. 😦

        • Tara March 31, 2017 at 1:36 pm

          I understand… I am 41, but felt like I was 95 and ready for the home these past few months. I swear this stuff taps into your genetic code and it’s like all the bad stuff on steroids if you would live to 100 and everything starts to go starts to come out at once. If I can overcome all the visual things, I can (dare I say it because it’s not OK and I’m still 100% angry!!!) live with the rest of the issues as they gradually subside. I can get through the day OK, but 4:30/5pm seems to be the “witching hour” for me when my head starts to get foggy, my face and brain seem numb in spots, and I get the most depressed about my situation… usually happens at the start of the weekend when I realize that I can’t have as much fun as I am used to having… I am so glad that you are 90% better. It’s hell- no getting around it! Nobody understands until you go through it- it’s a “Members Only” kind of club that no one wants a membership to, that’s for sure! Being poisoned is something that takes a toll on your mind, body, and soul…

        • L March 31, 2017 at 1:51 pm

          yeah..it is really so hard to describe to anyone what it has been liked. my naturopath told me when he first saw me he thought I was twenty years OLDER. I was down to 112 lbs, could barely walk without assistance, and was just a mess. I was really ready to check out at that point.

          I NEVER thought I would be normal again, and i was sleeping maybe one hour tops, with a sleeping bill, as I gasped for every breath. I was suicidal and really just wanted it all to end. I could not imagine I would be where I am toay…and speaking of doing normal things again, after more than 1 1/2 years I can’t tell you how nice it was to have a glass of wine! (Organic and from a country that does not fluoridate.) I am even starting to get back into a bit of acting (I was a professional stage actor among other things) so that feels so good as well…

        • Tara Tumilty March 31, 2017 at 3:29 pm

          Thanks for talking with me and giving me HOPE! I remember you telling me how awful it was. I couldn’t use my cell phone until today actually without it making me dizzy. I tried explaining this to the neurologist’s intern and she stared at me like I had a third eye… I thought, “Get your head out of the textbook, honey, because this is a real life lesson in medicine!” My head feels a little hot right now on top, but it comes and goes. I’m hoping for a full recovery and soon! I imagine I’ll still feel traumatized for quite some time yet no matter how much I’ve healed. I think every body issue I have from here on out I will tie to this experience!

  23. Kurt March 27, 2017 at 4:03 am Reply

    Does connective tissue and collagen heal over time?

    • Jeremy March 27, 2017 at 9:43 am Reply

      Yes.
      However, we need to be very patient if we are floxed – looks like this process is slower for us.

      • Mark S March 27, 2017 at 1:59 pm Reply

        You also need to give it the nutrients it needs to heal. Vitamin C, manganese, MSM, glucosmine, chondroitin, fish oil, zinc, etc. I am a little short of two years out. My Achilles isn’t healed but it is better. Hoping for more progress but I believe it is possible with time and nutrition.

  24. Ally March 27, 2017 at 9:48 am Reply

    Hi! I am about to have to take a course of doxycycline for a tick bite. I was wondering if any of you had any information on doxycycline causing the same type of reaction as Cipro etc.… I know they are a different class of antibiotics, But I’m still concerned about taking them and wondered what I like to do to protect myself during the treatment.?

    • Jane March 29, 2017 at 4:25 pm Reply

      ally I would steer clear of doxycycline. Here is my e mail address. deliciousdelight2017@gmail.com

    • L March 29, 2017 at 7:45 pm Reply

      ally I would strongly urge you to find a naturopath who does IVs. the one I saw —a good half his patients were there being treated for Lyme. Unfortunately, no one can say for sure how any particular antibiotic will affect a floxie

    • Tara March 31, 2017 at 6:24 pm Reply

      I had terrible vision issues with doxy a year ago- preflox- which could be why I have so many vision issues with the floxing experience.

      • Virginia April 4, 2017 at 9:38 pm Reply

        It’s very important to take at least 3 weeks of antibiotics for a tick bite. I have Lyme disease and run a support group. Doxycycline is the gold standard for a fresh bite, and is not at all related to FQs. If you have a bad reaction to it, though, switch to another non – FQ antibiotic.

        • L April 5, 2017 at 7:20 am

          This is the conventional AMA/MD treatment for lyme, and I can certainly understand someone going that route, BUT having been severely floxed, I personally would seek out treatment from a naturopath, including IVs

        • Bob April 5, 2017 at 7:37 am

          Anyone with Lyme needs to check out ACT Advanced Cell Training. They train your body to kill Lyme on its own. Doctors send people there.

    • ursula March 31, 2017 at 11:27 pm Reply

      Ally, a lady once emailed me, she got better post FQ’s and took doxycycline (Doryx) and all the damage all over, for months and months, severe insomnia and depression. I think she still suffers. Then again some floxies take it without any reaction. If I were you I would go to a Naturapath or a Homeopath.

  25. Sandra Word March 28, 2017 at 5:33 pm Reply

    Thank you for all the info shared here. I have been “in the dark” and finally finding some light for answers.

  26. Jane March 30, 2017 at 12:42 pm Reply

    I have just been in contact via e mail with someone else who was floxed . I have sent him details of floxiehope etc. When will this atrocity cease I wonder?

    • L March 30, 2017 at 1:49 pm Reply

      When it gets massive national attention, like the opioid epidemic has. I just spoke to one of the doctors who had “thrown me under the bus” over two years ago when this all happened to me. He only NOW, 2 years later became aware of the dangers of FLQs.

      • Kurt March 30, 2017 at 5:56 pm Reply

        Hey “L”. I saw in another post that you have some toes that are numb. Is that correct? I’ve got that too. My toe/foot numbness seems to still be increasing 2 years out. Has your numbness stopped progressing. Any help would be greatly appreciated!!

        • L March 30, 2017 at 7:13 pm

          Hey Kurt…yeah toes still numb two-plus years out (and a couple fingers that had spasmed wildly out of control are kind of wonky now). I think the numbness is maybe just a tad better because I remember at the beginning trying to get sandals on and could not figure out where the thong strap was unless I actually used my hands to guide my feet in. I still have numbness in all toes, but i think maybe not all areas of each toe. A LOT of my damage was either mitochondrial or nerve. I still get strangling sensation and not sure which that falls under. Same with breathing issues…mito or central nervous system? My olfactory nerve damage was absolutely stephen-kingish at one point where it was like being constantly surrounded by vats of bleach…EVERYTHING asphxiated me to the point of choking and I mean everything. That, along with the breathing would have been a deal breaker as far as going on with life. Now, it is 90% better, to where things still smell much stronger than normal. Other nerve issues too. Unfortunately, I ran out of money but one thing I think really helped me, which I want to start again, is phosphatydlcholine IVs which help with nerve damage. (They were around $180-200 each and I got around 23. They recommend 30-40. But yes, the nerve issues seem to have stopped progressing…now just hoping to try to reverse some

        • Kurt March 31, 2017 at 3:50 am

          Glad to hear things are improving for you, L!! I might have to try the IV thing, as it sounds like it really helped you. I need something. I’ll send some good vibes your way for more healing….

        • L March 31, 2017 at 8:05 am

          Thanks, and you too Kurt. I IVs truly did help me. I was severely floxed —head to toe and now I am around 90% better.

        • Kurt March 31, 2017 at 5:12 pm

          Did the IVs help your numbness? That is my main issue right now and it’s getting worse. Do IV treatments help with this problem?

        • Tara Tumilty March 31, 2017 at 6:29 pm

          Yes, I believe so. I’ve done about 7 rounds. I could not get out of bed, body crashed, total all over weakness and shortness of breath at onset of floxing. I couldn’t walk, talk, or think straight. My memory was gone. Word retrieval was terrible. I forgot my kids’ names. I forgot how to get home some days…I was so scared! I can work full time and be up from 7am-10pm now and sleep from 10-5am before I wake up. I believe the IVs restored my energy levels. They are expensive but spare no expense to get your health back! I had a constant electrical current sensation and random numbness. I’m almost 6 months out. Symptoms still cycle but are less each time. I get random numbness in my toes but it only lasts a few minutes now. My fingertips are sensitive but getting better. I get random tingling and still have trouble using my cell phone. My body feels numb when I’m on it or texting- weird stuff! I still have random times when my hips and shoulders hurt and feel like they’ll fall off. My vision is the most problematic for me. I never know what stage of healing I’m at. I first did a boat load of supplements but now just do probiotics, whey protein shakes and magnesium. I am starting to be able to eat stuff I like again. As soon as I would eat anything before, the neurological symptoms would come on full force! I’ve lost 50 lbs. since this started. I eat chocolate now and have an occasional decaf iced coffee. My MD told me my best friend is going to be a juicer, so I drink a lot of juices and eat a lot of veggies. I buy organic mostly, but not always eat organic if I’m somewhere it’s not available.

      • Jane April 1, 2017 at 5:04 am Reply

        I am going to write to President Trump about these toxic fluoroquinolones. I have had enough c” now from doctors and they need taking to task on this.

        • L April 1, 2017 at 4:03 pm

          hey, good luck with that. he doesn’t really care what happens to any of us. I think you might be better off writing to someone like bernie sanders who actually cares

        • Tom Marsella April 1, 2017 at 9:23 pm

          L: Foolish comment. Trump is our only opportunity. He’s already calling out Pharma for price gouging.

        • L April 2, 2017 at 8:20 am

          Tom, in an effort to keep this site nonpolitical, I can only say to you…you really need to do some homework.

        • Bob April 2, 2017 at 8:26 am

          Gee, maybe Trump can get the price of cipro reduced. I only paid $4 for the generic version. Not counting the $10,000 trying to recover.

        • Bob April 2, 2017 at 8:33 am

          Trump has sided with big business on every issue so far. If you think he will help us you are dreaming.

  27. Tara March 31, 2017 at 12:50 pm Reply

    I am doing IV glutathione and Meyers Cocktail. I was able to get out of bed after starting IVs. I work full-time and have three little ones. I have pain, but most of my issues are brain fog, dizziness, and severe vision disturbances. In time, I will heal…

    • Kurt April 1, 2017 at 4:31 pm Reply

      Yes…love the positive attitude. Best of luck!

  28. Jane April 1, 2017 at 2:20 am Reply

    That’s the spirit, positivity is everything. These drs should be struck off

    • Tara Tumilty April 1, 2017 at 7:01 pm Reply

      I would love to give them the same cocktail and see how they fair… And if they can keep working!

  29. Jane April 1, 2017 at 4:25 pm Reply

    L

    I will write to Bernie Sanders instead. Thanks.

    • L April 1, 2017 at 4:31 pm Reply

      good…I have written to him as well…and the attorney general…and several members of congress….and multiple publications……and cabinet members….and…….(around 50 letters so far)

  30. Jeremy April 2, 2017 at 11:58 am Reply

    Dear All,

    I just want to give you a hints on certain combination helpful for joints and tendons (I) and fasting (II).

    I.
    That’s what I’m using to speed up healing process for almost 6months and I can say that I’m seeing positive correlation with symptoms improvement (minor tendons pain, minor ulnaris neuropathy):

    1. Tendoactive (mucopolysaccharides+collagen) > https://www.ncbi.nlm.nih.gov/pubmed/21751149 – (…) These results indicate that Tendoactive® has nutraceutical potential as an anti-inflammatory agent for treating tendinopathy through suppression of NF-κB mediated IL-1β catabolic signalling pathways in tenocytes (…).

    2.Animal Flex 44 – this is a solid boost for soft tissues. – I do cycles: take 40 days, than don’t for some time, and again the cycle. Please read more on your own, no affiliation.

    3. Hydrolyzed Collagen pulver (proteins, amino acids) – I take every other day 1TBS – good quality is important. Great substitute for meat!

    All this together works for me.

    Continue….

  31. Jeremy April 2, 2017 at 12:05 pm Reply

    II. Fasting.
    However, I need to say that together with this the one single strongest positive influencer to help my soft tissues was fasting: different length, different types. Nevertheless, that was always real fasting, which means endogenous nutrition. Speaking in other words: to get energy human body consumes slowly less needed and sick cells. Together with additional energy coming from excluded heavy digestion process, this is a real miracle of cleanse and detox. I experiencing this every few months.

    Please find below good reads about fasting, based on studies:
    https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102383/
    https://www.ncbi.nlm.nih.gov/pubmed/25072352

    6 days fasting (with everyday calories intake) can really clean up stiffness in the knees – that’s my recent experience. When I made a 17 days fasting (200 kcal day for vitamins and minerals), my overall energy came back to amazing level.

    I have a mild prostatitis also, and this is my main goal for fasting, to get rid off prostatitis. I had another significant improvement after fasting.

    Weight change: when your brain already know this state is clever enough and we don’t lose so much weight. After 17 days i lost around 3,5 kg all together, but I’m pretty light. Recent 6 days fasting was minus 1,5 kg only.

    My next fast will be 14-20 days on water only > take a holidays for this time, spend whole days in the parks walking.

    I need to mention that when you do fasting Enema every 2-3 days is necessary.

    I learned how to do this in the German clinic , which has 90 years experience in fasting. Lot of medical research on to of it. I spent 21 days in the clinic.

    Please do your own research, read who can ,and who shouldn’t do fasting.
    I’m happy to answer your questions and maybe some of you have experience to share?

    Wish you all the best!
    Jeremy

    • Lisa April 5, 2017 at 3:42 pm Reply

      Thank you so much for the information, Jeremy! Fasting for rejuvenating mitochondria is really fascinating. I’m so glad that it has helped you!

      I’ve heard that it shouldn’t be done by people who have existing adrenal or thyroid problems. What are your thoughts on this?

      Thank you,
      Lisa

  32. JIM April 3, 2017 at 11:31 am Reply

    Hi All,

    Just wanted to update my situation and ask for some feed back. Also, want to give others hope that it does get better. Im a little over a year out. I was on Cipro for 5 weeks for a suspected prostate infection. That was in February of 2016. Within a few weeks of taking the medication I had a cluster of symptoms that started to appear.

    1. Tingling in face, forearms and feet
    2. Buzzing in my feet
    3. Insomnia that lasted months
    4. Ringing in my ears
    5. carpal tunnel in my hand
    6. Dizziness, light headedness
    7. Strange aches in my abdomen
    8. involuntary kicking of left leg when trying to rest
    9. stress headaches
    10. twitching that started in calves moving all over my body.
    11. strange aches in my legs, around my shins.

    My Dr. refused to connect the dots and attribute these symptoms to a 5 week course of cipro. I kept asking her “what are the chances that all of these symptoms just happen to show up just by coincidence after taking cipro”… A subsequent visit to a urologist resulted in the urologist telling me that the Cipro was unnecessary to treat my prostatitis. That made me even more frustrated.

    As the weeks went on and the symptoms started to appear I developed health anxiety. I started to worry that i had Multiple Sclerosis. I visited a Neurologist who basically ruled out MS, and he said it is possible that my symptoms were caused by being on Cipro for so long. Basically he told me that I have anxiety and I needed to get the anxiety under control.

    After being assured that i didnt have MS, I relaxed, and my symptoms started to lessen in their degree of severity. This was about 5 months after taking Cipro.

    Recently, I have noticed that the symptoms seem to come in waves. Ill have a few good weeks with few symptoms, and if I end up getting stressed the symptoms come back.

    Right now, a little over a year out, my main symptoms are burning in my legs and lots of twitching, mostly in my legs, but the twitches happen all over.

    As soon as I get a little stressed at work or home, the symptoms come back in waves. I know that Cipro triggered all of this. I find it hard to believe its a coincidence.

    I feel better today than I did in month one post Cipro, but I was wondering if anybody else has considered the Cipro-anxiety relationship. Could Cipro have triggered serious anxiety which is causing all of these issues? Or is anxiety just a byproduct of the Cipro.

    Also, has anyone experienced twitching that goes on and off for months? Burning in the legs too?

    • E April 3, 2017 at 2:18 pm Reply

      I have twitching all over sometimes too, mostly in my legs near my ankles. I think taking magnesium and epsom salt baths help with that. I think that the twitching could be made worse by your anxiety, but I don’t think the anxiety is causing the twitching, whatever damage cipro did is causing the twitching. It’s also hard to tell if the anxiety came about because cipro did some damage to your brain that caused anxiety, or if you have anxiety because you know something isn’t right in your body. I still have a hard time knowing what is cipro anxiety, and what is regular anxiety that I would have anyways. Hope that makes some sense.

      • JIM April 3, 2017 at 2:45 pm Reply

        Thanks E, that does make sense. I think for me twitching was one of the last symptoms that started – and it seems like the symptom that is most correlated with how anxious I feel. It comes and goes. Sometimes I wont twitch for days. Some days its crazy. I just hope it all goes away one day

        • Kurt April 3, 2017 at 4:57 pm

          Hi Jim…..I’ve had twitching and burning in my legs for about 8 months now. Burning seems to be getting a little better in the right leg. Twitching is still bad, but also seems slightly better some days. I originally thought that my twitching might be the result of anxiety, but then I saw that it was just another side effect of the Cipro.

        • JIM April 3, 2017 at 6:24 pm

          Hi Kurt, thanks for the response. Do you get tingling too?

        • Kurt April 4, 2017 at 4:24 am

          Not much tingling for me, just numbness. I have toes that are numb and an overall strange feeling in my feet, which doesn’t seem to be getting any better.

        • Corrie Clay April 17, 2017 at 9:24 am

          Ditto on the twitching. It’s almost constant for me and then there is the muscle spasms in calves and now back too. I’m about 2 years out from Cipro poisoning.

    • Lisa April 5, 2017 at 3:39 pm Reply

      Thank you so much for sharing your story, and for giving others hope that improvement is possible! If you want to have your story up as one of the recovery stories, please let me know through the contact link.

      I wrote this post about the connections between stress and fluoroquinolone toxicity – https://floxiehope.com/2017/01/09/cellular-stress-chronic-stress-and-fluoroquinolone-toxicity/. I think that fluoroquinolones tank our ability to handle stress. FQ toxicity is also incredibly stressful in itself. It’s easy to get into a vicious cycle of things going wrong in the body, anxiety over it, worse damage because of the anxiety, more anxiety, over and over again. Because the FQs mess with our ability to handle stress (because of cellular damage, hormones, genes, or something else) the cycle intensifies. I am NOT saying that fluoroquinolone toxicity is just a stress reaction or anxiety. It’s not. I do think that anxiety and stress make all symptoms of it worse though.

      Regards,
      Lisa

  33. esteffi1 April 4, 2017 at 1:48 am Reply

    Thanks Rene for your advice it is great to read!

    I would also like to add my own advice, I’m recently acutely floxed (6 weeks out from the A-A-bomb which exploded) but I didnt realise I had been getting progressively floxed over the last couple of rounds of cipro that I had in the last 1.5 years. Take care in buying your supplements, research them properly and educate yourself to why you are taking it and whether it is good quality and a good investment of your money. I went a bit trigger happy, and bought a whole spectrum. Not all that I need to take right now, and a couple that were errors and realised I bought an inferior quality or not quite the right one. And still with my research I am finding things that probably are better suited for my symptoms. Sometimes it’s hard because you cant tell what you really need until your symptoms begin manifesting over time. And the more you research the more you become educated. There will be some trial and error.

    I have two other bits of advice

    1. Have hope. I really found that no two stories are the same. The flox report horrified me because it states that I am in the severe category and it seems I am doomed for a long painful death. And I am only 26 years old. But with Diego’s story and recovery I feel hope for my case. And remember in Stu’s story the stockdale paradox, so have hope that you will eventually get through this but realise the reality of what you are facing.

    2. Now that you are more educated, try to prevent further illnesses. We all took these medicines because we became ill. My story might not be the same as yours, but all my illnesses that resulted in taking Cipro could have been prevented. I just couldn’t see it. In normal life we don’t expect to get ill and then end up in this situation. But we can now take better measures to take care of our health. For me that means reducing stress, taking more rest, eating a better diet, limiting toxins and using natural treatments and listening to the signs of my body..

    Thanks
    Steff

    • Lisa April 5, 2017 at 3:24 pm Reply

      Thank you, Steff! You are wise beyond your years!

      Regarding buying high quality supplements, if you can find some that certify that they are free of fluorine/fluoride, that is probably best. I don’t have any specific recommendations, but for those who are newly floxed, it is something to look out for.

  34. Ann April 4, 2017 at 10:21 am Reply

    Hi everybody
    Has anyone had problems with high heart rate and high and low bloodpressure? Its definitly my autonomic nervous system that do not work. I did a tilt test today, almost passed out. The lowest bloodpressure was 65/35. Really bad. And sometimes very high. Im going to my doctor on friday and Will call The cardiologist tomorrow. But has any one has such serve bloodpressure problems? And what to do? Its up and down like an elevator. this nightmare never ends.

    • E April 4, 2017 at 6:36 pm Reply

      I was diagnosed with POTS before I was floxed, but my symptoms got worse after floxing. Nearly passing out and vision going black every time I stood up. It’s gotten better over time. I haven’t experienced high blood pressure though so I don’t know how to handle that. The thing that helps me with my low blood pressure is salt, obviously that won’t help when your blood pressure spikes. I wish I knew what to tell you to make it better. Increasing your water intake might help regulate things, but getting some advice from a cardiologist would be best.

      • L April 4, 2017 at 6:55 pm Reply

        Might also be mitochondrial damage

        • Ann April 5, 2017 at 12:27 am

          L
          Yes it can also be that to

      • Ann April 5, 2017 at 12:26 am Reply

        Hi E
        Well im going to a cardiologist. She was The one that sent me for a tilt test. But i had to fight to get on. Like always, They just blame everything is anxiethy. But with this tilt test results she cant blame it on anxiethy anymore. I also wonder if this is pots or dysautonomia, because i have so much going on. with The water. I drink alot, and have noticed that its a little better when i drink alot of Water. I have Heard about The salt, that People with pots should eat alot of salt. But The problem for me is that i get very low or very high blood pressure. Like my body cant control it. Have Heard that pots can also have you had high blood pressure to. Not only low. Im definitly have to go back to The cardiologist . But your pots got better? How long did it take to start to get better? I guess it has something to dowith, i have small fiber neuropathy from head to toe and extreme muscle waisting.

        • E April 5, 2017 at 2:09 am

          Salt will help with low blood pressure, but when your blood pressure is jumping around like that salt won’t help sadly. I had POTS before I was floxed, so I still have POTS symptoms, but when I was first floxed, all the symptoms got significantly worse than they normally were. Anything that was wrong with me before floxing was magnified I guess. I still get dizzy, and all the other POTS symptoms, it just went back to the way it was before floxing. It took a couple months to get better, but I still have flare ups that last a few days every now and then. When its bad it can be pretty scary lol. I’m afraid I’ll pass out and hit my head one day. I wish I could be of more help, but I hope seeing the cardiologist will help you figure out what’s going on.

        • Ann April 5, 2017 at 6:30 am

          Thanks E for your answer
          But good that it got better for you, or at least, to The way it was before.
          Yes i hope The cardiologist can help me figure this out. The neurologist said it was The autonomic system not working. But he didnt seem to care so much. But i cant do much. I have to sit or lay down alot and i really feel disabled by this. Almost passes out all The time. I hope it can get better, im 1 1/2 years out, but its not getting better

    • Jane April 7, 2017 at 10:59 am Reply

      Neurontin can cause these side effects.

      • Elise April 19, 2017 at 10:24 am Reply

        Is it bad for you if you’ve been floxed?? I’ve been prescribed it for withdrawl for a few weeks….but yesterday started kidney and bladder aches and back aches and lightheaded…brain fog…stomach pains…diarrhea.. joints haven’t been bad jaw is hurting a little sometimes and I’ve been having the twitches but that’s normal with withdrawal so I don’t know which it is…I just don’t know what it could be…

    • Faisal April 9, 2017 at 2:45 pm Reply

      Hi Ann,

      I have same problem high heart rate and low blood pressure 😦 now 15 months still

      I think win I take high vitamin c I feel good

  35. Ryan L April 5, 2017 at 11:50 am Reply

    Hey all,

    For those who’ve been around a while, I could use some help. I believe I have a staph infection on my lower left leg/foot, and it may be at the point where I need to get an antibiotic (WHICH I DON’T WANT). I’ve been doing tea tree oil, coconut oil, oregano oil, and even used emuaid to try to prevent this next step, but I may be out of options. If you know of antibiotics that are safe for floxie, please let me know. I’ll be visiting the ER in the next two hours, so any help would be greatly appreciated.

    • L April 5, 2017 at 12:23 pm Reply

      hey Ryan, you may not have a lot of choice in what they offer you, but that being said I think good old amoxicillin is one of the more benign ones. If there is any way you can find ad ND or integrative doc where you are that does H2O2 IVs, they are antibacterial (and anti fungal) or perhaps ozone therapy.

      • Ryan L April 5, 2017 at 12:35 pm Reply

        Thanks L. Unfortunately I live in a small town that has only the basics when it comes to medical care. I had been slowly healing up to this point, but this could be a big set back depending on what happens. I’m hoping and praying for the best.

        • L April 5, 2017 at 12:52 pm

          OK—I knew Lisa had written on this topic before…here you go

          https://floxiehope.com/2014/08/08/antibiotics-after-fluoroquinolone-toxicity/

        • Ryan L April 5, 2017 at 1:25 pm

          Thanks L, this is what I needed.

        • Lisa April 5, 2017 at 3:19 pm

          Can you get manuka honey? That’s something to try too. I know that it’s terrifying to take antibiotics after getting floxed, but sometimes they’re necessary. I hope that amoxicillin or doxycycline does the job for you! Both seem to be well tolerated by floxies.

        • Madge hirsch April 5, 2017 at 4:19 pm

          I had an infected cyst in my breast about a year ago and I cured it using honey dressings. It was not the Manuka honey that Lisa has suggested – just our own organic honey from our hives. It took about a fortnight for the cyst to open and then heal up. I used the same treatment on a much smaller one that appeared in the other breast ( I am sure these were due to Cipro as I have never had such a problem before) and this healed much quicker. Each time I changed the dressing I cleaned the area with boiled water with drops of oregano oil added.

      • Ryan L April 5, 2017 at 3:42 pm Reply

        Thanks Lisa. I printed out the information from your post and took it with me to the doctor. I was actually surprised because she was the first one who didn’t seem to question my prior reaction to quinolones. After looking at your notes, she prescribed Amoxicillin. I’ve tried manuka honey in the past, but it causes Gerd issues for me. So now I’m just hoping and praying the med wipes out the infection swiftly so that I may continue healing.

    • Virginia April 5, 2017 at 1:58 pm Reply

      I’ve taken about a dozen kinds for my chronic Lyme, and only Cipro has damaged me. I’m trying to avoid Azithromycin because it may have given me heart palpitations, but that’s not definite. If I had a staph infection, i would definitely take any antibiotics except FQs.

    • Jane April 5, 2017 at 4:56 pm Reply

      Hi L I empathise with you having been in a similar position myself very recently with a severe ear infection. However the infection you have really does need an antibiotic/ Sorry.

      The dr should take a swab for culture an sensitivity to check out the appropriate recommended antibiotic.
      Amoxycillin may be the most suitable in terms of safety.

      I hope this helps.

      Jane

      • L April 5, 2017 at 8:24 pm Reply

        actually I am not the one with the staph infection. But if I were, I would try all other options before an antibiotic. That’s just me. I was severely floxed and it affected my breathing, my vision, my GI system, my heart, my central and peripheral nervous systems, and more. So, yeah, antibiotics would be an absolute last line for me.

    • Daniel L April 6, 2017 at 5:45 am Reply

      Get a prescription for Fucidin and apply it topically, 3 times a day.

      Always works for me. It _is_ an antibiotic, but I’ve taken it without problems.

  36. Garry April 5, 2017 at 7:37 pm Reply

    I am allergic to wasps and bees. Nearly every season I end up in the hospital and they give me epinephrine, Benadryl, and prednisone. I understand I cannot have prednisone anymore. But is epinephrine and Benadryl ok after floxing?

    • L April 5, 2017 at 7:41 pm Reply

      I read this on the ephineprhine (and think it’s probably ok) “Epinephrine is a naturally occurrring hormone and a neurotransmitter that’s also known as adrenaline” Benadryl is an antihistamine, and I would think that would be ok too. But yes, I would steer clear of prednisone

  37. amaep April 6, 2017 at 10:48 am Reply

    Hello, I am a 28 yr old female from central MN. I recently took Cipro for 3 days -500mg, 2 times a day for traveler’s gut in Jan 2017 upon returning from a trip overseas. I had a bout of diarrhea on Feb 26th and my body went out of wack (I believe strong side effects from Cipro). I was struggling to breathe and got put on a 5 day dose of Prednisone (this was a very bad decision on my part I have learned).

    I am still dealing with heart palpitations, fever, loose stools, hand/face tremors, restless sleep, gas, burping, ear ringing, dry lips, acid reflux and muscle spasms in April now. I have been seeing my Chiropractor and getting acupuncture done once a week, which is helping some of these issues. I have completely cleaned up my diet, not eating anything processed. However, I am losing weight frequently, was 117 in 03/15 and now 112 on 04/06.. which I’m not sure is from the clean foods or the GI issues..

    My question is broad – wondering if any Floxies know what steps I should take to work on these issues? Or on the GI issues..? loose stools, burping/gas, acid reflux. I have been doing tons of research for the past 6 weeks and am going to start taking magnesium and a probiotic (does anyone have any recommendations the best probiotic?).. If you have any advice, please help. Very glad I found this website. Thank you!

    • Terry April 6, 2017 at 11:23 am Reply

      A good probiotic, sauerkraut, kefir(if you tolerate dairy), bone broth(homeaid is the best. Use organic safe bones) or pacific sells organic bone broth. It will take time to rebuild your digestive system. A Wahls paleo diet may be helpful. Some buy collagen powder. Magnesium. These are all good in my opinion for starters. Try one at a time for possible reactions.

    • Bob April 6, 2017 at 12:09 pm Reply

      I would also take a calcium supplement. It helps to detox cipro. The doctor that gave you cipro for that problem is an idiot. I hope you never see him again unless you sue him.

      • Jane April 9, 2017 at 4:58 am Reply

        Bob I agree! Well said. These quacks have a lot to answer for.

    • L April 6, 2017 at 12:17 pm Reply

      You need magnesium but steer clear of citrate—most likely to give you diarrhea. If you can find goats milk kefir that is good for gut issues. THe probiotic should be multi=strained and be in the billions…usually the refrigerated kinds…and check reviews for different brands. Avoid fluoridated water too

  38. holly April 6, 2017 at 12:59 pm Reply

    Hi everyone- I am over a month out from being floxed and my muscle weakness is progressively getting worse. I’m trying to stay calm but wanted to ask the group if there was anything that helped for the weakness. I have also cleaned up my diet. I really appreciate the help.

  39. Laura April 8, 2017 at 5:40 pm Reply

    I was blessed to run into a woman who gave me a card with information on cipro , levaquin and Avelox. I have all the symptoms.!!! I took cipro for a urinary tract infection five years ago. There isn’t a day that goes by that I feel good. I actually think some days I’m dying.I was moving at the time doing a lot of lifting so much brain fog and weakness and then took more antibiotics for a month for h- pylori . I was able to get social security disability . I think they based it on thinking I was insane , and a hypochondriac ! Although Im diagnosed with fibromyalgia osteoarthritis adhd depression and ibs If it weren’t for my leaky gut , I probably wouldn’t be here . It keeps me on track eating a diet of mostly organic food. Lots of greens.!
    We all need to take trace minerals. !!!pro and prebiotics!!
    And get our guts in the right shape first if we want to survive this !!!!!. I need to talk with someone else who suffers . Because family and friends think I’m crazy . 😪Oh Lord ….
    If they only knew ! One more thing . If it weren’t for my faith … prayer and meditation time , I definitely wouldn’t be here !!!

  40. Rawal, the Romeo (@E_Perry_Admirer) April 9, 2017 at 3:02 am Reply

    Mine´s a long, long story, as would be the case with all of you. We all suffer in our similar yet unique ways. This website´s just awesome! I hope God rewards everyone of. I´ve been a reader since three weeks now, finally decided to post to get advice on something.

    I was Ciprofloxed in January 2016, most of my symptoms are mental and emotions (insomnia, heart palpitations tremors, concentration issues and memory loss etc.) but all that is somehow 100% connected to what I eat. I´ve removed all foods that cause me trouble, but it´s now water that´s causing me issues. Mineral as well as tap water… Would it be any wise on my part to try out distilled water to see how it goes with me? Would distilled water be any more damaging to my health?

    I hope to see the day where I´ll recover enough to post a recovery story here, but right now I´m still far away from that!

    Warmest regards and hugs to you all,
    Rawal Afzal.

    • Rawal Afzal April 9, 2017 at 4:09 am Reply

      Hello, here’s Rawal again. I forgot to add a few details regarding my water intolerance.

      I’d all the while been drinking a mineral water that contained 0.12 mg fluoride per litre. I switched to the tap water, which isn’t fluoridated here in Germany, and felt better for two-three days but then my symptoms returned. I then found out the tap water still contains 0.6-7 mg fluorine. I then switched to a mineral water that contains fluoride as low as 0.02 mg per litre. Again, two good days but my symptoms returned eventually and have become intoleranf towards that too!

      I’m so far yet to find a mineral water here that contains no traces of fluoride. I’m on a fluoride free toothpaste and mouthwash though. The thing is, I can’t even for surety conclude whether it’s the fluoride that’s causing me literal mental retardation or some other chemical, which`s why I’m thinking of distilled water as the only option. Anyone out there with similar issues with water or with a solution that worked for them?

    • L April 9, 2017 at 8:34 am Reply

      I would say it depends on whether there is fluoride in your water. If there is, you want to steer clear of that. DIstilled is good, but it is “dead” water and you need to add back in the minerals you need. There are several products that do this. One is called ConcenTrace.

      • Rawal Afzal April 10, 2017 at 12:27 am Reply

        Thanks a bunch for your response, especially the mention of those mineral drops.

        I’m currently in contact with a company that makes non-mineral but fluoride free water – it isn’t distilled though. They say that they’ll contact me soon and let me know the exact ingredients of their water.

        Made another discovery yesterday made you, the heated water from an electric kettle too causes me symptoms. Other Floxies too should take note of this.

        • Jeremy May 16, 2017 at 7:04 am

          Moreove: water in the kettle collects fluorid. It’s important to *remove* all the water from the kettle before filling it up again for next heating up.

      • Rawal, the Romeo (@E_Perry_Admirer) April 10, 2017 at 8:39 am Reply

        L, nope, it doesn´t seem like that a water without fluoride is a possibility. Have received another negative response from yet another manufacturer. The one I´m on right now contains 0.02, but even that is causing me troubles. Distilled water might be my only option it seems, although I´ll wait for a response from another manufacturer that I´ve contacted. My attention right now is also on the plastic bottles that the water is packed in. As next step, I might stay on the one that I´m right now, but might try the glass bottles. Mine seems like more or less sensitivity to the ingested chemicals; again, it seems that way.

        • L April 10, 2017 at 8:45 am

          sorry to hear that. yes, I think distilled would be best, but again, you need to add minerals back in. if you cannot find the one I mentioned, you can use fulvic acid

        • Jeremy May 16, 2017 at 7:02 am

          Hi Rawal, I live in Berlin, the best waters I found so far are from Turkish sources: Saka, Hayat, etc. Saka has 0.03 fluorid.

          It’s impossible to find water without fluorid, but you know that already.

          Best

  41. Kurt April 12, 2017 at 3:08 pm Reply

    Hi all,
    I’ve had this strange metallic? taste and slight burning in my mouth for the past couple months. Does this ever go away? Wondering if anyone else has had this? Thanks for any info.

    • L April 12, 2017 at 3:23 pm Reply

      I also a weird taste…I would describe more as chemical, and it did go away. (Of course I also had olfactory nerve damage—quite severe and at different points I smelled gas, smoke, chemicals….but the taste thing for me just lasted a couple months as I recall

  42. Richard April 13, 2017 at 3:45 am Reply

    I’ve taken 10,000. 500mg pills of Cipro in the past 25 years. And now I’m here.

    • Kurt April 14, 2017 at 4:57 am Reply

      Please tell us your story, Richard….

  43. Jane April 14, 2017 at 4:32 am Reply

    For Goodness sake please do not take lyrica/pregabelin without first reading the terrible side effects. I know that sometimes when one is desperate one may in a moment of weakness take anything to try to feel better.

    I have felt that way myself!!

    However please be very wary of these drugs, they are very nasty and one wonders why they are even produced let alone prescribed ! Silly question as we all know why, for money.

    In conclusion when I reported a side effect of a drug for epilepsy the hospital pharmacist said to me ‘you can always find a reason if you look hard enough to stop any drug’. I said well take the drug yourself , suffer the side effects like I have then come back and say the same.
    People like that make me feel sick-literally.

    End of rant.

  44. Paulina April 14, 2017 at 9:58 am Reply

    I took cipro jan 2016 for uti for 5 days where afterwards i experienced major chest pain, chest tightness, ear ringing or buzzing (wet ears in the morning?) tremors, heart palpitations, vibrations in the body, muscle twitching, dizziness, mid back pain, eye floaters, brain frog, anxiety, insomnia. I was on a leave because i couldnt work. I saw soo many specialists…my results were coming back perfectly fine and no one was able to help me. In fact one dr wanted me to see a psychiatrist becuse he thought its something in my head or maybe i was depressed.. and yes u can get depressed if you feel that something is wrong with your body but no one can figure out…i have seen naturalpaths and took over 40 different ivs…like vitamin c mayers coctail, amino acids, ala….and few f
    Hydrogen peroxide ivs….As of today which is a year and 4 months later most of the symptomps are almost gone but some still persists like chest tightness, ear ringing which is on and off (the worst is at night or when its quiet), light dizziness and light eye floaters….i went back to work a year later and over all im doing much much better. I think i will try the ozone therapy iv as well and bowen therapy that was suggested by my naturalpath. Anyone tried that??? Im so worried about my chest tightness and throat tightness. Im taking probiotics, magnesium and shitake mushrooms to boost up my immune. Will this go away with time??? L. You mentioned you had that? I had the consistent chest pain which went away after 11 months but im left with chest tightness, its hard for me to take a full breath…feels like somethings is blocked inside my chest…i did mri for chest and xray and nothing showed but still…could this be tendonitis or some kind of muscle disfunction? Someone please help me. Im still short of breath….

    • L April 14, 2017 at 10:17 am Reply

      Hi Paulina…yes I had all of that and more, and I credit IVs with saving my life (have now had over 70.) I had the chest pain, chest tightness along with horrific breathing problems and the sense of being strangled. A researcher suggested the chest issue/breathing problems were from mitochondrial damage. I had assumed all along that the neck thing was more nerve damage since I had a lot of that. But another doctor said she thought that was ALSO from mitochondrial damage. I am now trying a new IV (just started) called Poly MVA, which has ALA as its main component, and then other supplements, which is supposed to help with Mito damage. We shall see. I also have “Sound” all the time even when it is very quiet. there is no absence of sound. Hard to describe—not tinitus—that buzzing sound, which I have since had on and off. Just almost like constant static. I am guessing that is more nerve damage, since I had horrific olfactory nerve damage where all scents were so amplified, I was constantly being asphyxiated. Also still have major annoying floaters, light sensitivity and now a couple more serious macular and retinal problems. Cipro—the gift that keeps on giving.

      • Paulina April 15, 2017 at 4:20 pm Reply

        Hey L. Thanks for replying 🙂 Did u try ozone terapy? And did the neck and chest tightness got better? Still the tightness or less? And how long are u out? I started going for neck and chest and back massage. It does loosen up a bit….but im just so scared that ill never heal and i throw myself into the anxiety loop…

        • L April 15, 2017 at 4:29 pm

          I didn’t do ozone because I was getting H2O2 IVs and there is much overlap. I am 2 years, 2 months out. The chest and neck have gotten better but still problems (the neck less so.) THe chest thing is either mitochonrial, or the fact that cipro also gave me pericardial effusion (fluid around the heart.) Sadly, that has not changed. The things they recommend are NSAIDS, prednisone and another steroid, which of course I can’t take now. I am going to start curcumin IVs next week, which help with inflammation and hoping that will affect the fluid.

    • Barbara Arnold April 15, 2017 at 3:13 am Reply

      Hi Paulina,
      Sorry your having such a tough time, hang in there things will improve and time is a major component for some people. I am two and a half years in and although I’m not 100% yet I am soo much better. I came back from vacation and a long flight of 9 hours, there was no way I could have done that in the early days.
      Ozone autohemotherapy helped me and I had about 12 sessions, during which I thought I was cured. Unfortunately my symptoms came back but to a much lesser degree. Ozone kills virus’es, now I still have ozone
      occasionally for a top up also I found I had more energy afterwards. Some people get worse before they get better, usually known as the herx effect, it happened to me, but it was worth it to keep going. I would encourage you to research beforehand so you know all the pro’s and con’s.
      At the moment I am having accupunture which has also really helped with pain and reduced swelling in my legs.
      I am now COMPLETELY gluten free, which has also really helped. I messed around for a long time only doing it half heartedly and it was a waste of time. You have to go the whole hog. There is gluten in just about every can or bottled stuff so beware.
      I took every suppliment known to man and have no idea if they helped or not. Now I only take mag, vit c and good probiotic. I also came back from vacation with a UTI in agony but after taking penicillin and D Mannose its gone after a week, thank God. I didn’t want to take the penicillin but the pain was so bad I was forced to.
      I also was very short of breath and it turned out I have a heart arrythmia, don’t know if its from cipro or my age, (I’m 73 years young) I just know that I have never had any issues with my heart before. Maybe you should get your heart checked ? ECG ?
      As for NOTHING showing up on tests, that’s par for the course. Cipro passes the blood brain barrier, giving false signals. I had every test going and ALL came back negative, thats why Doc’s think your nuts, they just don’t understand whats going on. However “some Doctors” are now slowly getting it, not enough yet but some is better than none.
      I always warn about haveing a Nerve Conduction test as it caused a massive flare up with me and a bucket full of pain. Some people have them without any problems, that’s the nature of the beast.
      My present situation is good, I have no pain, very little swelling in my legs, I am loosing weight ( I put a ton on after cipro and also being in a wheelchair for two months didn’t help ) and yesterday I walked a kilometer, would have done more but it was to hot. That alone was a flippin miracle. So you just have to keep going and never give up.
      I forgot to say vitamin D is also very important, so if you havn’t already, get yours checked.
      Hope this helps.
      Hugs, Barbara

      • Paulina April 15, 2017 at 4:00 pm Reply

        Thank you so much Barbara :)))) im 36 but i sometimes feel like im 80 with these crazy symptoms and sometimes no energy… i do believe that eventually ill get better. Although now i have more days where anxiety kicks in and im just so scared that out of this cipro poison something else could arise…..but i need to stay positive. Im a mom and i have 2 little boys that need me :))))
        Barbara, they checked everything my heart , my chest – mri, mri of my spine…, my head. I didnt let them do any cats scans…due to radition so i chose mri and ultrasounds….blood work was excellent…. my ekg was good the only thing is that my heart is racing after cipro – on and off…. and thats about it..
        .the only lingering symptoms are chest neck tightness and ear ringing…ill try ozone therapy the one through iv..
        .my dr said that i could see results after 3 sessions. So we will see how this will go….apparently ozone works for ear ringing….

        • Barbara Arnold April 15, 2017 at 10:21 pm

          Hi Paulina,
          Good luck with the ozone, it can only help. Please remember generally this is a marathon not a sprint, but you have to keep going until you get there. There were many times I went to a dark hole, but being a stubborn old git I refused to give in, no matter what. So remember if I could do it at my age, you certainly can. Also remember the anxiety is part of the crap of cipro, so dont let it fool you. You are strong, much stronger than cipro. If you get anxiety just breath deeply and slowly, practice this at least half a dozen times a day. Let the out breath take longer than the in breath. This tells your body to calm down. Then think of something great that makes you happy, like your lovely boys. You will get there xxx

    • Madge hirsch April 16, 2017 at 12:32 pm Reply

      Hi Paulina – sorry you have joined our not so merry band! I too had a cardiac reaction to Cipro with very fast and irregular heartbeat, chest pain and tightness. I have had breathing issues and upper back pain too but nowhere near as severe as L. I think some of the chest pain is due to cartilage degeneration round the sternum and I get pain in the whole ribcage. This comes and goes and ranges from barely noticeable to waking up feeling like somebody has given me a kicking while I’ve been asleep. My fast and irregular heartbeat has gone and my sternum pain is much better at the moment and my breathing has improved a lot. I am nearly 2 years out from my last dose of Cipro. I still have insomnia on and off, muscle spasms , tendonitis ,some neuropathy and a large floater like a tree branch in my right eye but am learning to accept that this is the new normal! But I am 65 now. On the positive side I believe I was floxed more than once many years ago when I was roughly the same age as you and I did get better. I had no internet then and my floxing reaction was delayed so I had no idea what was wrong with me – just that all was not ok healthwise. I have found curcumin useful for anxiety and believe it is crucial to maintain an optimal vit D level. I would also get your thyroid levels checked. I think my earlier floxings might have contributed to my hypothyroidism and being treated for that definitely helped me feel better.

    • Vee April 29, 2017 at 10:07 pm Reply

      Hi Pauline
      I have the tight chest too like I take shorter breaths now. I have a lot of fear about it. I am 6 years out. I also have a loud tinnitus among other things. Surprised I am still here.

    • Jane May 6, 2017 at 4:55 am Reply
  45. joanneg April 14, 2017 at 11:25 am Reply

    Hi Everyone,

    I just wanted to let you all know what’s been going on with me.

    I was doing really good with the magnesium and Omega patches, but eventually I started to flare and they weren’t helping. All my brain issues, the shaking, vibrating, dizziness got worse. Then I broke out with the shingles again on my back (this is the 3rd time since being floxed).
    So I decided to treat this flare as though it was a virus. I took a bunch of natural antiviral supplements and they all helped, but the olive leaf extract worked the best at calming everything down which now leads me to believe my flares are definitely from a virus.

    But it was just taking too long and I feel my immune system is in the gutter, so I ordered LDN which is supposed to help boost your immune system, and help with CFS/ME, MS, Fibromyalgia and a lot of other things.
    Anyhow, today is only the 2nd day, and it is definitely helping with all my symptoms like joint pain, brain issues the stinging and itching, fatigue ect. I feel overall very good just some very light stinging, but my brain is great! I have NO pain and I have good energy.

    I like to let you all know when I’m trying something different in case someone was thinking about trying it themselves. I know it’s too early to know whether or not this is going to continue to help which is always the problem I have. Throughout this whole ordeal I have found tremendous help from various supplements, but the help never cures or even lasts more than a few months or sometimes only days. So, we’ll have to wait and see.

    In the meantime, it would be great if anyone who has been floxed and has taken LDN to try and help with their symptoms, if they would post some details and let us know if it helped them or not.

    Thank you, and I hope everyone is at least better 🙂

    P.S. Ryan, I was wondering how you were coming along with your infection, and how you reacted to the antibiotic??

    • Bob April 14, 2017 at 5:26 pm Reply

      What is LDN?

  46. joanneg April 14, 2017 at 9:50 pm Reply
  47. Madge hirsch April 16, 2017 at 4:30 pm Reply

    Hi Barbara – hope you had a good trip to Cuba. Have you had the results of your thyroid tests and heart ultrasound yet? Glad to hear you are doing well. What’s your secret for the weight -loss? Initially after the hospital iv Cipro I lost a lot of weight without trying. I was happy about it as I have struggled for years with my weight. But then I put it all back plus a bit more. I find exercising is making my tendonitis worse so don’t do much other than work in the garden 2/3 hours a day. Even this knackers me but I have been a keen gardener for years and would be utterly miserable if I could not do it. I have had to modify what I do though to avoid tendon tears. I suspect my thyroid meds need to go up.

    • Barbara Arnold April 17, 2017 at 1:16 am Reply

      Hi Madge,
      Thanks for asking, my thyroid was fine, and I am still waiting for the heart ultrasound, probably be sometime in May. Since coming back from Cuba ( it was great by the way) I have felt well. I have tightening muscles in my legs and feet in the night which wake me up, then I go to the loo and go back to sleep. This happens 2 to 4 times a night. Also if I walk a lot the batteries go flat in my legs, apart from that I have been okay. I coped with the 9 hour flight well and I swam a lot in the ocean. All this with a good dose of vitamin D, and plenty of cq10 before the flight ( its been proven flying depletes coq10) helped a lot. I surprised myself that I did so well. My breathing seems to have improved as well, so it will be interesting to see the results of the ultrasound.
      I am having accupunture for diet and pain. She is a chinese Doctor and has studied for 7 years. She knows a lot. The ND is also a medical Doctor and he devised the diet for me, basically it’s Gluten, Sugar and Dairy free. The first few weeks on it I had a sugar crash and I suspect my body thought…. what the hell is going on because I did not have an ounce of energy, couldn’t lift my arms to dry my hair. Cried a lot, then after two weeks things started to change, I started to get lots of energy as I lost weight, so far 7 kilos in 6 weeks and continuing. Also it’s very low carb. Now my favourite food is potatoes and I thought it would be to hard, however I have a little potatoe about twice a week and the acupuncture really helps along with going every week to get weighed. My saving grace is I am allowed wine 😁😁 hallelujah .I have been able to drink alcohol from the begining and in certain times when the pain was bad I swear it helped. The diet is pretty boring but I dont get hungry, thanks to the acupunture, so I am able to stick to it pretty well. The Doc says as I get nearer my target he will add in other things, but I will be gluten and surgar free for life. As I had slightly high cholesteral before the weight loss it will also be interesting to see if that’s gone down to when I get my next one.
      Hope some of this helps Madge. I would make sure you have support if you decide to do the diet as I was getting nowhere with weight loss on my own.
      Hugs,
      Barbara xx

  48. Stephanie April 16, 2017 at 5:53 pm Reply

    So I am continuing to have to wait to get eeg and more waiting because of me bad insurance I guess they are worried more and more what’s going on in my brain. My dr just looked at me and smile when I guess I had checked out of a conversation I don’t remember. I just took shower and had trouble keeping me eyes open. I been quite because it’s all a lot I’m constantly loosing communication ability based on me tired. I can’t try cbd oil because expensive and would mean I couldn’t do the once month IV treatment I get. No place will let you sample it first and that stuff impact everyone different.

  49. Jane April 17, 2017 at 7:01 am Reply

    Stephanie have u been checked for Vit b12, D, deficiencies or had your thyroid screening including thyroid antibodies checked?

    • Stephanie April 30, 2017 at 12:34 pm Reply

      Jane–I just had lab work done for all of these on Thursday. Have not heard back yet. But before the Cipro, I already had hypothyroidism and am taking Levothyroxine. I also have had lower vitamin D levels and iron prior. But, due to IBS I have a hard time taking supplements. I try to get more in my diet. I wish there was a way to take these without getting diarrhea/gas. I also was already on a gluten and lactose free diet and taking a probiotic. I have several other health issues (chronic back issues, GERD) which may have made me more susceptible to the Cipro toxicity. Should I have boron and CoQ10 tested?

      • Jane May 21, 2017 at 4:29 pm Reply

        Sorry Stephanie Just seen your reply.

        I hope that you are ok with T3 for your hypothyroidism. In the UK there is a big scandal because T3 is not going to be allowed to be prescribed because of the hiking up of the price of it by Concordia ,Teva and other drug companies.

        Yet T3 is said to be necessary for a lot of people suffering with hypothyroidism.

        Thyroid UK are discussing heading a campaign to the Government about it.

      • Jane May 27, 2017 at 2:17 pm Reply

        Hi Stephanie I have just come across this link to exercises for peripheral neuropathy.
        https://www.google.co.uk/search?q=exercises+for+peripheral+neuropathy.&ie=&oe=

        In relation to your question about testing for Biotin and CoQ10 I would research this as I am unsure.

        If you have your B12 tests the results will be skewed if you are already taking supplements / If you have absorption problems then you could try injections of the various supplements.

        Alternatively there are sprays and sub lingual preparations available.

        Probiotics are good, personally I am unable to tolerate them but..

        Silica is said to be good as it detoxifies heavy metals.

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