Joanne G’s Recovery Progress

parathyroid-gland-drawing

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

Much of Joanne G’s story and background can be found in the comments on the Floxie Hope homepage. The following was a post on the Floxie Hope homepage that Joanne G gave me permission to post. As she posts future updates, I will ask her permission to post them here. 

 

The Parathyroid surgery helped with the extreme heaviness, fatigue, bad heart palpitations (I thought I definitely would have a heart attack), and extreme stiffness where I felt like I had rigor mortis, it helped me gain back weight, my hair stopped falling out and is getting much thicker. Also, I got an injury in my stomach while on Cipro right where your liver is (I think it was my liver, but mri’s, and cat scans couldn’t find anything) and it would never heal, and it was so crippling I couldn’t lift any amount of weight whatsoever, couldn’t carry my purse!!! Anyhow, the day of the surgery it was immediately better, .but there’s still a dull ball in that area that is not right, and still think it’s my liver.

I’m 26 months out from Amoxicillan, Flagyl, Cipro, steroids, nsaids, and prilosec all taken at the same time for 2 months.
These were my symptoms and every one was SEVERE. I definitely did not think I would survive
-extreme central nervous system issues (this was the hardest thing to deal with) nothing woked right;
-extreme insomnia for about 15 months I would sleep like an hour an a half
-extreme depression, panic, nightmares crying jags
-wrenching stomach pain
-extreme head pressure
-extreme hot flashes
-vision changes- blurry and I lost my peripheral vision(came back about 15 mos. out)
-SEVERE DIZZINESS like I’m continuously drunk with terrible balance, floors feel like they’re moving, I felt like I was walking under water or in another world or totally stoned!
-brain constantly shaking and racing out of control
-tmj
-stabbing tooth pain in many teeth
-my body couldn’t handle the summer heat or cold winter temperatures
-numbness in face, arms and legs and my skull was extremely numb and tingly
-dry eyes and mouth
-urinary issues- going way too much then not enough feeling like I had a uti
-tinitus
-hyper smell, sound, and vision like over-stimulation with everything
-extreme chemical sensitivities ( smells and supplements)
-extreme brain fog and forgetfulness – couldn’t follow conversations, forgetting words, my kids names my address, a couple times I couldn’t remember how to get out the car. I had to really think about it
-extreme hair loss-my scalp constantly tingled and itched
-deep vertical ridges on all my finger nails
-extreme hyper feeling then I would get extreme fatigue and stiffness
-joint popping,crunching, cracking and stiffness over-stimulated muscles (to touch)
-developed high calcium within the first 3 months which eventually (22 months later) I had to have the parathyroid surgery to remove a kidney bean-size tumor attached to one of the four parathyroid glands

I had so many things wrong with me I can’t remember them all.
The only thing that I never had was the burning sensations that I read others had, but I think everything else i read about I’ve had.

The one thing that I do have that I never heard mentioned is, since being floxed when I have blood work drawn the pain is extremely ridiculous, almost unbearable. And it’s not just where the needle goes in, it’s my whole arm, and it lasts for hours afterward. I don’t have any idea why??
If anybody else has this please let me know.

26 months and one parathyroid surgery later, I still have:
-shaky brain, but waaay better, not always there just when flared up
-Joint issues, but waaay better, not always there if I take magnesium
-Stomach issues, but waaay better, not always there just when flared up
-blurry vision, always but worse when flared up.

So, I still have some issues, but my life is so much better than the first 18-22 months. These symptoms are bearable. I can laugh,LIVE, be happy, play with my kids and my grandson, not constantly wondering if I’m gonna crash and burn today!

These are the supplements and things I know for sure helped me and that I still do every day:

-MAGNESIUM : In the beginning when my cns and my brain was spinning out of control the only relief was magnesium especially a strong magnesium bath (Chloride or Epsom salt) Now I take 140 mgs of magnesium chloride every four hours while awake (about 700 mgs)

-PROBIOTICS: one that helps the most is VSL#3 but I switch up with all different kinds

-COLOSTRUM: I take 1 tbsp. in 8 oz. of water twice a day (as soon as I get up and right before bed on an empty stomach)

-Green drinks and Berry drinks

-Also, I drink bottled spring water and “try” to eat mostly organic (I don’t do this very well)

Hope this can bring some HOPE for those of you still in the worst of the suffering and wondering” WILL THIS EVER END??”

I do believe I can bring a lot of hope to people who are totally devastated and feel there is no way to recover from the system-wide devastation of these horrific drugs. I want to encourage them and let them know there is HOPE!!!

 

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, affect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

32 thoughts on “Joanne G’s Recovery Progress

  1. Aidan Walsh July 22, 2016 at 8:06 am Reply

    :)’s wish her continued Health & Happiness :)’s

  2. Madge hirsch July 22, 2016 at 3:57 pm Reply

    Among other symptoms I too get the hyper smell one. I remember the day I returned home from the hospital where they gave me 2 days iv Cipro (before it was stopped because I complained of chest pain and pins and needles in my arms) I went to sit in our garden and remarked to my husband that I could smell the toadstools growing in the grass!

  3. Erika July 24, 2016 at 7:22 pm Reply

    I too had the smell hypersensitivity. It has now finally normalized. A little over a year after my floxing.

  4. Erika July 24, 2016 at 7:26 pm Reply

    Yes, it can end. I have totally recovered. It has been a little over a year. I still get some shooting pains in my fingers/feet every so often, but they are short lived and bearable. For my teeth, I experienced a great improvement with my teeth when I started using a remineralization toothpaste (organic) with bentonite clay in it. Now, all pain is gone there too. The dry eyes and mouth have lingered but are very bearable now. At least my throat does not close up any more. I still have to use eye drops up to 10 x a day and sometimes only 3x. Life is good.

    • B July 24, 2017 at 5:47 pm Reply

      Erika, how old were you when you got floxed? Do you have any best practices? Did you stop working full time? What would you do differently? Thanks, B

  5. Brandy August 1, 2016 at 6:50 am Reply

    I get the pain in my arm every time I have blood work done.

  6. Ryan L September 21, 2016 at 11:32 am Reply

    Hey Joanne,

    I don’t know how often you check this, but I was wondering if you had any tendon issues since you took the FQ’s with a corticosteroid. Your story has been very encouraging, and I hope you continue to feel better every day going forward.

    • joanneg September 21, 2016 at 3:02 pm Reply

      Hey Ryan,

      I did have tendon issues throughout my body. At my worst I couldn’t walk without help when it went in my pelvis and hips. It was very painful and frightening, and it lasted about 6 months. Also my arms and shoulders were really bad I couldn’t extend my arms like my tendons were to short, and my shoulders were the same but with horrible pain. I had no strength in them, and I couldn’t sleep on my side for almost 2 yrs because of the pain. The shoulders lasted the longest about 2 years, but the intensity would go up and down throughout.

      Thanks for the well wishes and for always sharing with us the things you are learning.

      Make sure you do all you can to heal and replenish your gut. That and magnesium were the only things that I knew definitely helped me.

      I pray you heal quickly

      • Ryan L September 21, 2016 at 6:43 pm Reply

        Joanne,

        Thank you for the prompt response and encouraging words. I also took a FQ with a corticosteroid, and had been wondering how you may have dodged the tendon bullet. I’m sorry to hear you didn’t. Like you, I’ve had a lot of different issues since day one. So far my biggest issues are heat intolerance and tendon pain. Some of the tendon pain may simply be from tight muscles, but others could be classic toxicity symptoms. I think my gut has been healing slowly over the last 9 months, and hopefully it will continue to improve (I really wish I could find that O Formigenes in a probiotic supplement lol). Anyway, thanks again for the response, and I will pray for your continued healing.

        Ryan

        • joanneg September 21, 2016 at 9:14 pm

          Ryan,

          At 9 months out I certainly thought I was going to die, nothing in my body worked right. My brain felt like it was continually being electrocuted and racing out of control, my head had sooo much pressure in it and my skull was dumb, I was continually dizzy like drunk dizzy, my eyes were so blurry and weird, my ears were full and ringing, I couldn’t walk across a room without fainting, my heart was beating out of control,heat & cold intolerance, wave after wave of hot flashes, I would drench my clothes, my stomach was wrenching with pain, my liver had a constant orange-size dull ball in it, my kidneys hurt, and I had to get out of bed numerous times to go pee ( once I counted 12 times) and that’s when my tendons and joints were at there worst. I lived (or should I say survived) in that constant never ending state for about 16-18 months before it started to let up some.

          I said all that so you will KNOW you will get better.

          Also, is this the O Formigenes you were referring to http://www.oxthera.com/products/ .
          I remember you posting about a good probiotic that only another country had, but I can’t remember why it was suppose to be so good ??

          Anyhow, I hope this is it, and let me know if it is and why you wished the US had it.

        • Ryan L September 22, 2016 at 11:51 am

          Hey Joanne,

          Thank you for the encouraging words. I know that I’m still somewhat early into this whole nightmare at 9 months, and hopefully my symptoms have peaked and will only get better from here.

          Oxthera is working on a medicinal treatment (Oxabact) that has the O Formigenes bacteria, but it’s not yet available. India sells a treatment called Oxalo which has O Formigenes and other good oxalate degrading bacteria. The reason O Formigenes is so important is that FQ drugs have been shown to completely wipe it out, and it’s the top notch oxalate degrading bacteria. So living life without that strain can present some challenges for people. Lisa comments on that strain in the link below.

          https://floxiehope.com/tag/oxalobacter-formigenes/

          I’m currently looking into seeing if I can get it shipped from India, but I’m concerned since it needs to be shipped cold in order for the O Formigenes to survive. Outside of Oxalo, the only other way I know to get that bacteria is through a FMT (Fecal matter Transplant). Unfortunately one needs to be on their death bed with a major clostridium difficile problem to have a FMT safely done in a hospital. You can do it yourself at home with a friend/family members donor stool, but that presents its own risks that a floxed person may not want to pursue unless they were already feeling pretty well recovered.

          If I can successfully get Oxalo shipped cold to my doorstep, I’ll be sure to let everyone know.

  7. Shirley September 27, 2016 at 9:37 pm Reply

    Hi Joanne,

    I am about 2 months into this nightmare, I only took the antibiotics for 2 days. Instant panic, depression and anxiety. Do you remember how many months passed for you before you saw some relief, even the tiniest bit of hope from this? How long was it until your anxiety started to lift a little bit? Thank you

    • joanneg October 16, 2016 at 10:42 pm Reply

      Hi Shirley,

      I didn’t see any relief until about 16-18 months out, BUT I didn’t know I was floxed, and I didn’t start taking magnesium steady/therapeutically till about 14 months out.

  8. Sophie October 12, 2016 at 3:26 am Reply

    Hi Joanne, thanks for your story… I m 14 months out and I m in the exact state you are describing above, this is exactly how I feel right now… I have kinds of general malaises every day… my heart beats so fast, I m drenched, dizzy and don t digest anything with strong stomach,gut pains… all these symptoms seem to be linked to the autonomic nervous system… Im sooo skinny and I just can t eat anything raw… I really don t know what to do… thyroid and parathyroid have been checked and so far normal… have yours suddenly been ill? Do you think I still have hope that things will calm down a bit? I m not living but trying to survive right now… i don t know how much more my body can handle…
    Would you recommend anything?
    I hope you are continuing to get better.
    I quote your words because they could be my exact mines right now. ..

    Take care and thank you for your story which helps a lot.

    Sophie

    ‘ At 9 months out I certainly thought I was going to die, nothing in my body worked right. My brain felt like it was continually being electrocuted and racing out of control, my head had sooo much pressure in it and my skull was dumb, I was continually dizzy like drunk dizzy, my eyes were so blurry and weird, my ears were full and ringing, I couldn’t walk across a room without fainting, my heart was beating out of control,heat & cold intolerance, wave after wave of hot flashes, I would drench my clothes, my stomach was wrenching with pain, my liver had a constant orange-size dull ball in it, my kidneys hurt, and I had to get out of bed numerous times to go pee ( once I counted 12 times) and that’s when my tendons and joints were at there worst. I lived (or should I say survived) in that constant never ending state for about 16-18 months before it started to let up some.’

    • joanneg October 16, 2016 at 10:32 pm Reply

      Hi Sophie,

      Sorry, I just saw your post and
      I’m sooo sorry you are going through this crazy nightmare!

      My best advice is for you to get Remag magnesium and take a 1/2 a teaspoon every 4 hours.
      You should start seeing improvements quite quickly.
      And whatever you do don’t ever stop your magnesium. I tried to stop 4 times since this all started, and every time I got sick all over again.

      What supplements are you taking now?

      I also take 1 tbsp colostrum and a probiotic on empty stomach in the morning and again around 6pm.

      Please let me know how you’re doing.

  9. sophie October 17, 2016 at 1:51 am Reply

    Dear Joanne,
    Thank you very much for your answer. I take magnesium glycinate but not a high dose…
    I will add yours. I need to order it because I live in France. I ve found that site in the U.K.. Is it the remag you told me about? https://www.botanicahealth.co.uk/shop/remag-magnesium-liquid-solution/
    If it s ok, what size is the best for the bottle?
    I ve taken omega3 and 6, spiruline, curcumine for inflammation.
    I ve had blood tests done which show a very high B12. Last time, i went to the ER and they said I had a low potassium whereas it was normal 2 or 3 days before… weird… I get sicker each time before my periods… milk seems difficult to digest… so do you think I can try colostrum?
    I ve bern taking probiotics for a long time but don t seem to notice any difference. Do you have an advice for probiotics as well?
    Thanks a lot for everything… I m just thinking if you have progressed, I can do it too… but it s really hard… have a nice day.

  10. joanneg October 17, 2016 at 6:03 pm Reply

    Hi Sophie,

    Yea that is the magnesium I’ve been using. It’s very strong, so you might want to start with 1/4 of a teaspoon to see how you respond.

    In the beginning I was taking magnesium glycinate which worked good, then I switched to magnesium chloride and it worked good, but since my last flare up I switched to the Remag because in the information on this site http://drcarolyndean.com/2012/11/magnesium-burn-rate-and-dosage/ it said magnesium deficiency can take about a year to replenish when using the traditional supplements, but when using Remag , it takes about a month or two. I order the 8 oz bottle. This also is an interesting article about magnesium. http://www.naturalnews.com/032714_magnesium_cipro.html

    My b12 is always high, i’m not positive, but I think it was in the high 900’s.

    As far as my periods, they stopped abruptly the week of taking cipro, then I had one a year into this and that was the last one, and I’m 2 1/2 years out.

    The colostrum sites all say it shouldn’t bother you even if you have allergies to milk. Here’s just one , but there are many. http://www.detoxinternational.com/(X(1)S(frv1tguxl32uohkpnvzdj0wq))/default.aspx?menuitemid=200&AspxAutoDetectCookieSupport=1

    The probiotics that work best for me are VSL#3, but I do switch them up here and there and even take a break from them when my stomach’s doing good.

    Throughout this whole ordeal I have tried many different supplements that were suggested, but most, if not all, made me worse except for these three, so these are the only supplements I’ve used daily.

    Again, never stop trying to find the right magnesium for yourself and then take it therapeutically/high dose. I take about 750 mg per day.

    I hope this helps, and I’ll be praying for your recovery.

  11. Sophie October 19, 2016 at 8:31 am Reply

    Thanks you very much Joanne. I will concentrate on magnesium from now on… I ve ordered Remag! And what about you? how are you? Is your life much better than during the first 18 months? I will let you know about my improvements… I m sure you will continue to heal. Do take care! And thanks again for your support!

  12. joanneg October 22, 2016 at 11:20 pm Reply

    Hi Sophie,

    Please check my post on the homepage for an update on Oct 22

    • Lisa October 24, 2016 at 6:11 am Reply

      Here’s a link directly to it – https://floxiehope.com/comment-page-62/#comment-46124

    • sophie November 6, 2016 at 5:35 am Reply

      Hi Joanne, I m really sorry to hear about your new problems. Thyroid issues are sometimes long to sort out. You ve made progress and I m sure you will continue to. So take care. Sophie. It is a long and painful road but you ll make it!

      • joanneg November 6, 2016 at 7:48 pm Reply

        Hey Sophie,

        Thank you for all the well wishes 🙂

        I just wanted you to know (in case you don’t follow the home page) that I’ve been using Multi Vitamin Plus patch by http://www.patchmd.com/, and it is helping tremendously with ALL my symptoms, and it pulled me out of that horrible debilitating flare I was stuck in for more than 2 months now.

        I hope your seeing some recovery, and PLEASE try the vitamin patches. I truly can’t believe how much they helped me.

        Let me know if you try them

  13. Sophie November 12, 2016 at 8:50 am Reply

    Hi Joanne! Thank you very much for the patches. I will try them and let you know! Take care!

  14. Ann January 1, 2017 at 8:16 am Reply

    Hi Johanne
    Now i have read your story. Ohh so you also took flagyl like me?
    I have every thing you wrote on your list , and much more.
    The off balance and dizziness, is it better for you today? Im so happy that you feel better from this night mare, even if you have some things to deal with still.
    I have started with colostrum now, to see if it can help me. Did you see improvement right away with that? I have taken it around two weeks now, i belive. But i havent noticed anything yet. But i guess it takes time.

    /Ann

    • joanneg January 1, 2017 at 11:21 am Reply

      Hi Ann,

      For the dizziness, I can’t even express how much the Omega patch from http://www.patchmd.com/ helped my brain. It worked so good and so fast it was really unbelievable. Nothing I tried worked that good. It took my dizziness almost completely away within the first 2-3 days!

      I wore it every day for about 10 days then cut it back to about 3 days a week because it has a diuretic effect and I didn’t want to wash away all my minerals.

      I buy mine from ebay because they’re $15 instead of $20.

      I hope you try it and get the same relief that I did.

      • Ann January 1, 2017 at 11:41 am Reply

        Thanks for your answer
        No we dont have it here. But i take omega 3 every day and also eat coconut oil for my brain, but nothing helps
        Did you also have off balance? Its like everything swaying. And thats even more bad when walking. Its there 24/7, its so Hard to deal with.

        • joanneg January 1, 2017 at 12:56 pm

          That’s exactly what I had, 24/7 nonstop! I also took omega pills, coconut oil and tumeric, but none of those helped my brain.

          I don’t know why the patch works, but it does. Maybe it’s one of the other ingredients in it, or because it doesn’t go through the stomach??

          Can’t you buy off the internet? that’s what I do.

          If you can’t order it let me know. I will mail you a pack of the ones I got.

        • Ann January 1, 2017 at 2:13 pm

          I havent found that over here, in my country. but i will google more. Ok, the off balance, didnt it go away until you took the patches then? Or did it got better before that? Im so tired off everything in the body, pain, neuropathy ,but the dizziness and off balance is driving me crazy. I have a hard time to go any where because off it.

        • joanneg January 1, 2017 at 2:50 pm

          My brain was the worst thing for me to deal with and that patch helps me with all the dizziness, off balance, shaking, vibrating, brain fog, concentration, following a conversation, doing tasks,feeling like I was gonna have a mental breakdown, and everything that was just wrong, and it made me feel almost normal.

          Let me know if you can’t get them, and I’ll mail you a pack so you can at least try them to see if they help you.

        • Ann January 3, 2017 at 8:30 am

          Hi joanne
          Thanks, so Nice off you. I Will let you know if i Will try that. Im going to try magnesium Again first. I tried that before, but reacted badly, but i Will try it Again first. How much colostrum do you take? It seems that my gut can take it this time. I tried it before, but then i just felt awful, but this time, its going better, so im happy about that. But i cant take it to much yet

  15. Elizabeth July 15, 2017 at 12:29 am Reply

    Oh I have the blood draw pain now too! Before it never used to bother me. Now it is horrible. Very strange. I have the same reaction as you, just as severe. Do you think things are still improving? Did it get better all at once or very slowly? I’ve turned a corner but am curious about your pace since our stories sound very similar

  16. Azz August 18, 2017 at 6:27 am Reply

    I seem to have paranoia and almost phychosis hallucinations, from all I’ve read I can’t seem to find anyone else who’s had this. If so is it possible to recover?? Ive been having it for 2 weeks now along with everything else mentioned above

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