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

 

 

 

19,546 thoughts on “Floxie Hope

  1. Frank B November 11, 2018 at 10:41 am Reply

    Hey all! Long time no post.Haven’t forgotten about you guys.I don’t want to jinx myself but I think I can say that I’ve finally normalized.I am far from symptom free but life is much better now.
    At the moment I’ve been dealing with low Testosterone,Thyroid and strangely low Iron?
    I’m male and eat meat so who knows? If any of you are new I signed up here a few years back in a suicidal state,and I found some great support,and I will always be greatful to Lisa and everyone who reached out.It has been nearly six years since my second Floxing or rather relapse brought on by a Sulfa drug,and I just have to say,”DON’T GIVE UP!”
    Time is the best supplement for this disease so hang in there.

    • L November 11, 2018 at 11:56 am Reply

      Good news, Frank! Glad to hear you are doing (mostly) well. Interestingly, a number have posted re thyroid issues. I already had low thyroid, so can’t blame the Cipro for that. (Now for the OTHER 30+ things…..!!)

      Iron deficiency could help explain (in addition of course to mitochondrial damage) another reason for the fatigue that floxies feel. I believe there is a genetic connection there too, which perhaps floxing sets off

  2. A.Coleman November 11, 2018 at 8:14 pm Reply

    Hey gang. Wanting to know how many of you developed high blood pressure as a result of floxing? I am three years out. Until about six months ago my BP was around 125 over 85 so not perfect but pretty good. And this was two plus years after floxing. Fast forward to today. In the last six months my BP has sky rocketed to 150 over 100. What is even crazier is that a month ago it was 148 over 88. Now I am faced with going on BP meds. Pulse is only 60.

    My question is this FQ Related or something else? I am C677T MTHFR heterozygote but my homocysteine was good last time It was checked. BTW I am about two months into the second worse relapse I have had.

    Are there any BP Meds I should avoid or consider? I have an appointment with my integrative medicine doc, who believes I was floxed, in a month but I think maybe I should see a regular doctor before then and let my integrative doc make adjustments.

    Feedback very much appreciated.

    • L November 11, 2018 at 9:53 pm Reply

      That was one of the few issues I did NOT have, but wanted to mention this. A friend, who was on meds for high blood pressure, went to my integrative MD., who told him to take ubiquinol twice a day (coq10, but people over 40 have a hard time changing it into the usable form.) He is now off high blood pressure meds.

      • A.Coleman November 12, 2018 at 6:29 am Reply

        L Thanks for the thoughts I do think that my BP problems are a combination of my MTHFR issues and floxing. Before this last relapse I was nearing being well. Think my body may have started trying to operate normally but due to MTHFR and FQ remanents triggered this relapse. I am on Coq 10 once a day and take liposomal glutathione daily. At 51 I know metabolism of some of these nutrients is tough especially as a MTHFR floxie.

        • L November 12, 2018 at 11:43 am

          If you’re 51, you want to switch to ubiquinol. “If you’re over 40, I would strongly recommend taking ubiquinol instead of CoQ10 as it’s far more effectively absorbed by your body. In every study conducted so far, ubiquinol has been shown to be far more bioavailable than the non-reduced form (CoQ10).” https://articles.mercola.com/sites/articles/archive/2013/11/03/coq10-vs-ubiquinol.aspx

    • Dee November 11, 2018 at 10:19 pm Reply

      A Coleman, you might write “Ruth” who had some issues with her BP going up 3-4 years after floxing. I know that she did not go on BP meds and rode it out. Don’t remember how long for but post on her story and she wil usually get back to you!

      • A.Coleman November 12, 2018 at 6:30 am Reply

        Thanks Dee I seem to remember that post. I will reach out to Ruth.

    • Henk Noordhuizen November 12, 2018 at 4:59 am Reply

      Magnesium is one of the main causes of high BP,and the list of magnesium “eating” Farmaffia meds is growing (Amoxicilline is one,too).Vitamine D is important for good heart helth,and healthy fats as well.Here a Mercola article about fats (and about the bad side of sugar and carbs):

      https://articles.mercola.com/sites/articles/archive/2012/05/31/coconut-oil-for-healthy-heart.aspx

      • Dee November 12, 2018 at 8:06 am Reply

        A Coleman. You mentioned you were in a relapse. How long ago were you floxed?

        • Dee November 12, 2018 at 8:08 am

          No need to answer. Sorry just saw when you were floxed on your post. Do you know what caused your relapse?

        • A.Coleman November 12, 2018 at 10:22 am

          Dee – don’t know for sure what caused relapse. I was thinking about writing a healed story as my lingering digestive issues improved and my nerve issues while still present were minor. And crazily enough even as the relapse started my digestion continues to improve and is nearly normal now.

          I think this might have been the trigger – healing and the body thinking it was time to start operating like normal then not having the necessary nutrients and ability to metabolize them. I had slacked a bit on my Mg supplementation and even took a week off supplementing. Then about three weeks ago I started using the ReMag pico Mg solution of Dr. Deans and rededicated myself to Epsom salt baths on a regular basis.

          So, maybe this is the cause and maybe it is just the crazy random nature of being a floxie.

  3. Dee November 12, 2018 at 2:05 pm Reply

    A Coleman, sorry don’t know your first name? Sorry you had this blood pressure relapse. Is it possible it isn’t related to being floxed since everything else is actually still improving or minor?? Is your blood pressure the only symptom acting up?? May I ask how much FQ you were floxed with and how long did it take until you felt mostly recovered before this blood pressure spike?? I hope this “relapse” is short lived and that you can write your recovery store real soon!! The fact that you are still experiencing improvement with your digestion and nerves is promising and hopeful for you!! I am 17 months out and made a lot of improvement but still experiencing digestion issues which is mostly morning urgency and diarrhea then I do pretty well until the next morning!! Argh!! I also am still battling with some insomnia although much better and the ongoing buzzing tinnitus which bothers me the most going to sleep and waking up. Anyway I sure keep praying got for continued improvement and hopefully full recovery “I hope”!!! I guess a lot of floxies take at least a couple of years to really feel better which is why I asked how long you took. Also what you did for your digestive issues??

    • A.Coleman November 13, 2018 at 8:29 am Reply

      Dee

      Sorry to hear about your continued digestive issues. My two main floxie issues were nerve damage and digestive issues (which I think were mostly nerve damage too). Initially after floxing symptoms appeared – about one month post floxing – I had severe peripheral neuropathy, uncontrolled sweating, intense stomach pain and gastroparesis. I dropped 25 pounds in the first month. I went on to battle for nearly a year with the gastroparesis and just as it was getting better started getting bad stomach nausea and reflux. I only had heart burn when I burped – but I burped 100 times a day or more. It took 18 months to get over that and today as I write my digestion seems 98% healed. I still burp a bit too much and experience mild nausea one or two days a month but in the last 3 to 4 months I have healed a lot after healing very slowly the previous 12.

      To clarify the relapse is not strictly the high blood pressure – first time this has ever affected me and I just hope it is tied to the relapse. The relapse was a return of nerve issues. An odd tingle and cold sensation in my shins and lower thighs started about two months ago. This is something I experienced for the first 9 months of being floxed, but hadn’t experienced for a bit over two years. Then the peripheral neuropathy in my feet that had been either non-existant or very minor for over a year acted up. Finally the crippling insomnia returned about a month ago.

      I had a B vitamin test about a month after the leg tingling started and had to stop Bs for a few days prior to the test. Results showed me to be high in B6, B12 and folate and my doc thought that the leg tingle could be B6 toxicity. My B12 level, while high was not too concerning to my integrative physician, but she wanted to see my folate come down too. So I stopped all B vitamins for 10 days and only resumed them initially at 1/4 dose of previous for the next three weeks. I have ramped them back up to 3/4 of the old dose and my feet seem to be responding – so maybe I can try a half dose in a few more weeks.

      My shins are actually due to Mg deficiency I now believe and think that this may be part of my high blood pressure problems too. I had an RBC Mg test in March and the reading was near perfect. After that I began taking fewer Epsom salt baths (it was summer) and even stopped my Mg Glycinate for 10 days when I found out the replacement brand I bought was tainted with arsenic.

      What I now think is that as my digestion began to heal my body started trying to complete much delayed maintenance activities and started churning through Mg so fast that it eventually led to high blood pressure and the tingling / cold in my shins. It also led to the return of my insomnia.

      About two weeks ago I started using Dr. Dean’s ReMag pico Mg solution and started back religiously on Epsom Salt baths and using MgCl spray. I am not really sold on the ReMag and may go back to Mg Glycinate, but the Epsom salt baths and MgCl spray are starting to make the smallest improvements in my shins.

      I just pray that the high blood pressure is due to this problem too and once corrected it will go back to where it was before. I have another RBC Magnesium test scheduled in early December. In the mean time I made an appointment with my regular physician for this week to get treated for the high blood pressure. If that means meds then I will take them – though would still love to hear from a floxie who has high BP and what meds they tolerate. While I did message on Ruth’s story – I am not sure not treating is the best approach.

      Thanks to everyone – Henk let me know if you think I am on the right track with Mg in terms of action and my approach to treating. You are the guy in terms of Mg IMO. BTW – my Vitamin D is doing well at 87 ng/ul when I got results in September – actually reduced my supplementation a bit as a result.

  4. Dee November 13, 2018 at 9:38 am Reply

    A Coleman. Thank you for your response. I am glad you are starting to respond a little to the ReMag. That is a good sign and hopefully replenishing your mag will slowly return you to normal again. I know Ruth will read your comment and will get back to you about her BP experience. She doesn’t get a chance to write back until she had a break from her work schedule or weekend but she usually will get back to you. Hopefully she will have some insight for your situation! I take the liquid Angstrom Mag and have had luck with that. I don’t think I even absorb pills with having leaky gut although I take quite a few pill supplements and hope something is getting absorbed!! What did you do to heal your digestion?? Did you take anything to help it heal?? Did you take anything for your pherphial neuropathy. I still get numb toes and tingling in my lower legs which is worse at night time and waking up. When I move around during the day it isn’t as bad? How long before your neuropathy let up for you? How much FQ did you take initially to get floxed? I hope with continued mag that your symptoms will begin to let up for you.

    • A.Coleman November 14, 2018 at 8:18 am Reply

      Dee – wish I could tell you something worked to fix my digestion. But I can’t identify anything specific. I tried many different things but I think it was just time and never stopping believing it would get better. Even now I still expect some type of digestion related relapse down the road – hopefully minor

      I tried:

      colostrum – didn’t work
      whey – didn’t work
      made my own bone broth from organic meat and bones- maybe a very small positive impact
      Ate organic, whole foods – clearly didn’t hurt, but no clear benefit

      When my heartburn kicked in the one thing I did was avoid “traditional heartburn medication” since it further restricts your body’s ability to absorb nutrients. The other thing I started doing was taking Betaine HCl with lunch and dinner since I think in reality my stomach acid was probably too low. I took a maximum of two with each meal – while I could tolerate more the scientific studies I found showed that more than two lowered stomach PH to close to the “normal” range and additional ones had minimal impact. After a couple of months of taking two with lunch and dinner I went down to one and stayed there for nearly a year.

      In the precursor stages to my FQ symptoms coming on full blown I first had a nurse tell me to take Ibuprofen at a dose above the recommended levels for stomach pain I was having (the first signs of the FQ – so that was a really bad move for someone having a reaction to an FQ). Then to top it off I had a really arrogant nurse practioner tell me without any type of test that I had a small ulcer from the Ibuprofen. I questioned her but, still believing in western medicine at the time, followed her instructions and took a Proton Pump Inhibitor for a month. I think those horrible steps combined with the havoc the FQs were wreaking in my body is why my digestion was so messed up. Once the FQ symptoms erupted in full I stopped the PPI though by then the gastroparesis had set in. I still consider suing the nurse practitioner for malpractice

      As to neuropathy – that is a bit better story. For me it seems to be a B-vitamin issue combined with the FQ. I think part of my neuropathy is digestion related with my own gut flora not producing adequate vitamin B. The other part is that I am a C677T MTHFR heterozygote and while I never experienced problems pre-floxing; the mitochondrial damage the FQ did made that heterozygote state have a bigger impact. In fact one of the things that may have really helped my digestion was discovering my MTHFR status and modifying the forms of the B vitamins I was taking so that I got the right forms of folate especially, but also of Vitamin B6. In attempting to “get well” I may have overdone dosing a bit, so that is why I have backed off on my B vitamins a bit lately. That likely contributed in part to my recent relapse, but it was already started when I started tapering off.

      It took about a year for the neuropathy to get to a tolerable level and another year for it to get to a level where I only noticed it a few days a month. In the last week my feet have finally started to improve following this relapse, but my shins are still nearly as bad as they were six months post-floxing. You mention that your feet feel better after you get up and start moving around. I too notice that mine feel better – especially on days I run at the gym. They hurt a lot while I run, but an hour after I am done they are usually great. I must assume that it is a blood flow issue and exercise helps nutrients reach the nerves.

      Hope some of that helps.

  5. Darko Pet November 18, 2018 at 11:47 am Reply

    Hi guys, I am currently recovering from ciprofloxacin damage. Was flocked 6 weeks ago and mainly struggling with muscle twitching and fatigue, legs feel like jelly.

    Does anyone have an idea as to how long it takes for twitching to stop?

    Many thanks

    • Henk Noordhuizen November 18, 2018 at 1:17 pm Reply

      Darko,this cant be predicted beçause every person reacts different. Best you can do for now is taking a good magnesiumsupplement like magnesium citrate,or,even better,magnesium bisglycinate ( a chelated form of magnesium). I hope you’re lucky and have a quick recovery!

      • Darko Pet November 18, 2018 at 1:37 pm Reply

        Thank you Henk. It’s just really disturbing. I thought by now I would have recovered but the twitching just won’t go away

        • A.Coleman November 19, 2018 at 10:40 am

          Darko – just be prepared for it to take a long time for your body to recover. This is a poison in some individuals body’s and acts very much like a chemotherapy agent – except it is harder for your body to remove.

          Symptoms lessen over time for the large majority of us. However, a symptom that was gone for a long time (years) may return later. I am currently in a relapse dealing with a symptom that I first experienced and which went away over two years ago.

          Henk’s advice is sound for now. Get lots of Magnesium – consider not only ingesting it as a supplement (because not a log of it will be absorbed), but also use Epsom Salts in a bath or foot bath and get MgCl spray and spray it directly on the affected areas.

          Be careful with exercise for a bit until you see how your tendons respond.

  6. Darko Pet November 19, 2018 at 11:33 am Reply

    Thank you so much for responding. The twitching improved for a while and then in the last two days it has become continuous, mainly leg muscles. I am taking many supplements including magnesium but I just can’t see any improvement. How long did it take for you to see improvement?

    Thank you again

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