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

 

 

 

18,717 thoughts on “Floxie Hope

  1. Ronna July 14, 2018 at 4:11 am Reply

    Daniela, did you eat big meals or a lot of food each day to help gain weight?

    • Daniela July 14, 2018 at 7:45 am Reply

      Not big meals, just those things: avocado, ripe bananas, nut butters, oily fish, sweet potato, put olive oil on everything. Drink coconut water. Turmeric tea with honey. Remember people lose weight by eating just meat and veg.
      I developed food sensitivities to wheat, dairy, chickpeas. You can look into that, too.

      • Don M July 14, 2018 at 9:07 am Reply

        I spent/wasted 2K on a “specialist” in the “wellness” chiropractic field who used holistic medicines. For my money I got the advice “eat often’. Eat small amounts several times a day. I got a list of “NO” foods as well as a list of “GOOD” foods.
        Your comments are right on.

  2. Ronna July 14, 2018 at 9:22 am Reply

    What are the no foods? I want to be sure I’m not eating them. Thanks for the advice😊

    • Daniela July 14, 2018 at 9:57 am Reply

      Maybe it is the SCD diet list of legal/illegal foods.
      http://www.breakingtheviciouscycle.info/legal/listing/

      Don, I once looked into a naturopath who makes you pay that much to do Deepak Chopra’s free questionnaire.

    • Don M July 14, 2018 at 10:26 am Reply

      I was told that the “NO” foods are the night shade family. White potatoes, tomatoes, eggplant, peppers, corn, peanuts. Prepared juices too. I am sure that if you Google night shades you can find a full list of them. “Eliminate (gluten) things made with flour “. Or use gluten free flours. Minimize sugar intake.

      “Eat every 3 hours while awake”. “Make your meals rich in protein”. “Eat healthy fats, nuts and seeds. I snack on Sunflower seeds, mixed nuts, almonds. Eliminate as much as possible “processed “foods. The items mentioned above (avocado, ripe bananas, nut butters, oily fish, sweet potato, put olive oil on everything) sound like good advice too. I try to get at least 3 table spoons of “Extra Virgin” Coconut Oil every day.
      Here in the US there is a wild caught imported sardine (Season brand) available at Costco that is packed in Olive Oil.

      My day starts with 2 eggs lightly poached in a small pan coated with Coconut Oil spray. NO FANCY NONSTICK PANS!!!! Very low heat and just get the whites to turn solid and get white. Chop up in a dish with 3 table spoons of Coconut Oil, 2 table spoons of “Extra Virgin” Olive Oil, salt and “PLENTY” of pepper.
      Turmeric is said to be “oil soluble”. It needs to be taken with oil (Olive oil is best) to be best absorbed. Hence the heavy use of the 2 oils. Bioperine (commonly known as black pepper) is said to also increase the absorbability of Turmeric. Hence the liberal amount of pepper in the eggs.
      Then drink your Turmeric tea.

      I hope this gives you some ideas on a variety of foods that are appetizing.

      • Daniela July 14, 2018 at 5:32 pm Reply

        The only problem with the Season brand sardines that are commonly sold is that they are skinless and boneless. But there are other brands from Morocco that are in olive oil.

  3. Daniela July 14, 2018 at 10:00 am Reply

    Don, Still trying to help the cat who got better on colloidal silver but still shakes its head and scratches a bit. Not really anything in its ears.
    Maybe it’s allergies.

    Reading about phage therapy. It’s non-antibiotic and tailored to each person’s bacterial problem. It has been developed at an institute in Georgia (the central asian republic)

    • Don M July 14, 2018 at 10:36 am Reply

      Hmmm. I can’t be of much help other than the Colloidal Silver. My cat likes to scratch a lot but it never seems to be around his ears.
      Has any vet ever given a Fluoroquinolone antibitic to your cat? Vets seem to think that the affect on animals is not the same as humans. My opinion here………. clueless ignorance.
      I’ll have to do some reading on phage therapy.

      • Daniela July 14, 2018 at 2:47 pm Reply

        The vets offer a standard mix of fq or neomycin/steroid/antifungal. I think it’s very lazy if you have paid for testing to determine if there are mites or yeast. They all say the cat will feel better in a few days to a week, but that’s the steroid!

      • Daniela July 15, 2018 at 11:28 am Reply

        The colloidal silver we got has potassium alginate (a seaweed thickener) and edta (stops metals from binding). They all seem to have that added. Do you think that’s a problem? Also it says it’s 10 ppm.

        • Henk Noordhuizen July 15, 2018 at 11:55 am

          I think you better look for a pure colloidal/ionic silver.Wiki on potassium alginate: <> So,it’s a salt and will bind the silver,making it useless.

          WebMD on EDTA:<> So,it will probably bind with the silver particles,and,again,rendering them useless.

          I wasn’t even aware that these combinations excisted.Two added substances,both probably rendering the silver particles useless and maybe even causing a risk for argyria.Better not use this but try to find a pure silver colloïdal/ionic water.Another possibility is to make your own,with the Sota Silver Pulser (I use this device,both for coll/ionic siver and for pulsing my blood),or one of the other devices on the market.

        • Daniela July 15, 2018 at 12:04 pm

          Thanks, Henk. I don’t know why they added those things. It says pure colloidal silver, but those they were in the tiny type on the bottle 😦

          We really have to do everything on our own!

        • Don M July 15, 2018 at 12:28 pm

          Read this article and you would go no where near Colloidal Silver.
          http://eco-friendly-green-products.com/dangers-colloidal-silver/
          If it were anywhere near true how come silver has been around since before the birth of Christ? How come it has been used by many civilizations throughout history? How come medical science is beginning to find out today that adding silver along with other antibiotics makes them effective again? How come Brigham Young University tested and published a paper on the fact that Colloidal Silver was active against over 600 different pathogens? With all the “plus” information out there today about Colloidal Silver and it’s many uses it appears to me that this article is very, very, very misleading.

          Regarding the EDTA. I am totally puzzled at why it would be mixed into Colloidal Silver.
          Here is a description of it from Google: “How does Edta work? EDTA is a chemical that binds and holds on to (chelates) minerals and metals such as chromium, iron, lead, mercury, copper, aluminum, nickel, zinc, calcium, cobalt, manganese, and magnesium. When they are bound, they can’t have any effects on the body and they are removed from the body”.
          Remember………. If you look into it silver is a mineral as well as a metal. Just like magnesium is a mineral as well as a metal.
          If EDTA binds up all these metals so that they can be eliminated and have no affect on the body what purpose could Colloidal Silver provide if this were added to it?

          I just read Henk’s reply to you and agree.
          As Henk said and I agree. My impression is that adding EDTA to 10 PPM silver means that for you it is worthless and to the company it is a safe and worthless product to sell.

          This product appears to be kind of like the article I refer to above.
          Both BS.

        • Henk Noordhuizen July 18, 2018 at 9:05 am

          Hi Don,thanks for posting this link: http://eco-friendly-green-products.com/dangers-colloidal-silver/ The best laugh I had in weeks! This lady,Mary without a familyname,starts with writing a “critical” article about Coll. Silver,telling us how dangerous it is.She even gives us a “source”: a link that doesn’t bring me to the supposed scientific article but to a biography of an MD. The article she mis-linked is on the Mayo Clinic website, and not a high quality scientific paper. I’ll post that link later.

          Mary’s article is just copy of the article of the Mayo website,and her try to frighten us with argyria is almost funny;because there are so few people who turned blue she placed a pic of one man and two women. Or wait: actually those two women are one and the same! So,in fact there are only two people she knows of,with argyria,both of them having used silver compound which are known to cause argyria. There circulates another pic,of a man who worked his whole life in a silver mine;she missed that one.

          Then she goes on,telling us: “But there are far safer and more effective products other than colloidal silver”. Of course,now she will give us a list of scientificly proven effective and safe alternatives. Or will she? Here is what she says:

          “Cancer Fighting: Both turmeric extract and green tea extract are said to be powerful chemotherapeutic agents for cancer. In fact, it is said that these herbs can cause cancer cells to self-destruct. Additionally, turmeric and green tea extract are powerful anti-inflammatories.”

          “Bacteria Fighting: Olive leaf extract and oregano oil have been said to effectively destroy pathogenic bacteria, fungus’s, viruses and protozoa such as malaria. The herbs are also known to help treat infections like AIDS.”

          Are said to be??? It is said??? Have been said??? Known to help???? Doesn’t this sound scientific to you?

          Half of the alternatives she lists link to Amazon,and are produced by Herb Pharm. Conflict of interest,maybe??

          In now way I can take this lady seriously. She wrote this article in april 2015,and updated in januari 2018. And still “doesn’t know” about an ocean of articles and documentation about the safety and effectivety of Colloidal and Ionic Silver,and the fact that metals and minearls differ extremely on toxicity. Silver and gold are not nearly ast toxic as lead and mercury.In fact the body NEEDS several of these,in trace amounts (iron,copper,magnesium,chromium etc).

          I’ve used Coll./Ionic Silver for years,orally,and still use it as a desinfectant,topically. Not a trace of Smurf-colour untill now! Oned did a little experiment with a left-over bit. I desinfected two clean glasses with alcohol,poured an equal bit of milk from a freshly opended bottle in both of them and added the bit of coll. silverwater in one of the glasses.Then I put both glasses near a window,directly in the sun,and “shoulder to shoulder”.

          After a few days the glass with pure milk started to develop “colourfull things” ,and a nasty smell.Nothing happened in the other glass.After 1 week The pure milk housed several,untill then unknown species,some of them possibly extraterrestrial. Still nothing changed in the “silver”-milk.I threw the extremely rotten and stinky melk away,after making some pics of the result,both glasses side by side.After another few days I ended my experiment.By the there were littje,rubber-like “balls” in the still smelling fresh milk. They had some resemblance with kefir (the water kefir looks like half transparant little “rubber” balls,too.Other little “experiments” with Coll. Silver showed the same effect; to much to tell,here.

          Thanks,again,for the link,Don;at least this lady brought me a good laugh,and that’s a very effective and safe medicine,and dirt cheap as well!

        • Don M July 18, 2018 at 12:15 pm

          Henk…….. I wasn’t quite as amused as you say you were. I was more like disgusted with the idiot woman. There are people who will land on that web site and believe what she has to say.

          My daughter had a case of Thrush. It was deep in her throat so the doctor gave her something that she had to swallow to get to the problem. It was toxic and caused her more problems. She has ended up with nearly untreatable GERD. And guess what the doctor has given her for the GERD. Yup….. Proton pumps to lower her stomach acid.

          I took her a quart of Colloidal Silver and said drink it. It would go to the source of the Thrush and not be toxic. She went online and did her research (wouldn’t listen to me) and came up with the Argyria “possibility”. She never touched what I took her and has been sick ever since.
          About the “Blue Man”. What people do not understand is what he was doing with the Colloidal Silver to get himself blue. First he was adding salts to make it stronger. I have read he was trying to make it well over 100 PPM. Next he was drinking as much as a pint a day of it. Third he was washing his face with the silver mix because he had Acne. All that ever seems to be out there is that the “Blue Man” acquired Argyria. Well daaaa.

          I have been drinking Colloidal Silver (making it myself to about 15 PPM) for about 8 years and I am NOT blue yet.

        • Henk Noordhuizen July 18, 2018 at 1:45 pm

          Well,Don,to be stupid is not a choice,so,I try to not get angry about her stupidity. And although I read a lot about CS, I never landed on her website;most people will not read that nonsense.

          I can understand about your disapointment ,your daughter not daring to use your CS after she read about the (very small) chance of getting argyria.In the end it was het choice.I suppose she knew of you using CS for quite a long time without changing into a Smurf,and most websites she read probably ensured her that te risk of getting argyria from properly made CS was very,very small,but despite of that all she descided to not use it. I think it’s best to respect and accept her choice and get over it.

          She is using PPI’s now,like I did,and it got me into a hospital after about 15 years of use (2 times in 2 weeks,with very hefty cardiac arrythmia;had a long list of health problems at that time thanks to PPI).I think that,today,it’s way more important to help her understand the risks of PPI instead of spending your energy on things from the past;you can’t turn back time but you might be able to help her stop the PPI before a new disaster strikes her.

          Paul Karason might be the most wellknown case of agyria,and he explaines on television many time which mistakes he made.He also declared that he still used CS (but without the salt added) and still believed in the health properties of it.He is the man on the pic Mary’s article.

          The woman is Rosemary Jacobs;she used CS nosedrops.Here,as well,the CS is not the problem but the formula of the nasal drops,CSP,or:Colloïdal Silver Proteïnes. After all this years she still doesn’t understand the difference between CS and CSP:

          https://rosemaryjacobs.com/rose1.html

          She makes the mistake of mixing up CS and CSP ( CS,bound to a proteïne) over and over again,which is,of course,very stupid. But I feel sad for her when I read how argyria ruined her life. I hope that people who visit her website understand that CS and CSP are not the same; it’s the proteïnes in CSP that cause the argyria. A wellknown fact,except for Rosemary Jacobs.

        • Don M July 18, 2018 at 5:04 pm

          Henk………. While thinking about making Colloidal Silver I wondered why solid magnesium could not be turned into a liquid by the same process as one does silver. After all one can buy ReMag and Angstrom magnesium in liquid form. They tout it as the best way to get your magnesium.
          Make it short. I found this site on making your own colloids.
          https://shop.eck-tech.com/product.sc?productId=137
          He says he buys his raw stock from here.
          http://elementsales.com/
          Interesting.

        • Henk Noordhuizen July 19, 2018 at 5:37 am

          My god,Don,now you scared the hell out of me! That guy is a total lunatic,and an extremely dangerous quack! First of all;many metals are dangerous and toxic,some even in trace amounts.I think he ate too much of his brownies. Read here how he makes his cannabis infused salt,and his brownies:

          https://shop.eck-tech.com/product.sc?productId=534&categoryId=1

          A friend asked me,a few years ago,if it’s possible to make colloïdal copper with my Sota Silver Pulser.He read or heard someting about it and thought it would have a possitive effect on his health.Out of curiousity a changed the silver wires for some copper ones and it seemed to work;the water got coloured.Of course I could not check how big the particles were,and if there hadn’t been oxidation during the proces (the electrolysis splits water into oxygen and hydrogen;that’s why some of the silver,during the making of coll/ions,settles on one of the wires in a thin,black layer).

          Needles to say that I let him make me a promis to NOT EVER consume the slightest bit of that colloïdal copperwater I made him.And he kept his promiss;wasn’t so sure of the health factor himself,I guess.

          This guy sells a lot of different collöids,and says that most are without any colour,and healthy. That might be because there are no particles there;his oversimple way of making colloïds with a dirtcheap AC/DC adapter will not work well with all metals,I guess.By the way: he even sels Amber colloïds and has made it the same way.But that’s impossible because amber is an isolater,so this electrolyse system can”t work!

          This guy is an excelent example of a stoned New Age lunatic gone wrong.Could best stick to his cannabis laden brownies and keep far away from all things for which you need a brain.As you might have noticed: he wrote a lot of health claimes regarding his products but doesn’t give any source. Not even when he writes about his favorite herb;he even writes some plain nonsense about cannabis plants,grown for cannabinoids other than THC and CBD. Probably took to much of his brownies ;-))

          The interdermal way of getting your magnesium is the best;it’s safe and not expensive if you use the “oil” form. Buying the “oil may be a little expensive but I buy the saltflakes and make it myself.Just put 6 dl. water and 660 grams of magnesium flakes (Zechstein salt) in a stove and add just a bit of heat.Shimmer well untill the salt is desolved and put it in a bottle when cooled down.A plastic bottle is better because this solution makes your hands quite slippery. I use destilled water but clean drinkingwater will do.

          I don’t see any reason for experimenting with coll. magnesium. I use a new form that’s highly absorbable: magn. bisglycinate.I buy this one at my favorite webshop BulkPowders (UK) which also has a dutch website where I can pay in euro’s,and where my magn.,inuline and spore probiotics are way cheaper than other sources as well. When I think I need it,I use magn.oil but keep in mind that taking too much magn. per day isn’t just a waste but it might disturb the balance of magnesium/calcium/vitamine D/Vitamine K2 too much.

          Don,sorry to disappoint you here but this experiment is not worth the costs and the risk. Some colloïds can be a blessing but some defenitely aren’t.

        • Don M July 19, 2018 at 6:31 am

          Henk…… Just a retiree doing some brain storming and looking for a cheaper way to have things. The idea was if silver (considered a mineral as well as a metal) could be made with electrified electrodes, why couldn’t magnesium (a metal as well as a mineral) be made the same way? It appears that it could but would it be cost and time efficient to do it?

        • Dee Gilmore July 19, 2018 at 6:44 am

          Ronna, we have a lot in common! I still wake up 5/6 am every morning and of course hit the bathroom!! Still deal with mild anxiety and some pulsating tinnitus. I don’t remember if you have the tinnitus too?? Both in our 60s. Glad to hear you are doing a little better now! That is real encouraging!! I definitely think being in our 60s slows our recovery but we will still make it even if we have to crawl!! I am retired PE teacher (just retired) so won’t go back to work and had to miss my last semester of teaching when I got floxed! It debilitated me quite a bit mostly my CNS nervous system. I was a wreak! I feel so much better at 13 months out but I think from reading stories that year in half-two years seems to be the norm for many floxies!! Here’s to continued healing and making it all the way!!!! We can do this!!!! Going back to work I think is a great idea for you!! I just try to stay busy but somedays are longer when I think about going through this and the fear and worry sets in!! How much FQ did you take to get floxed??

          Sent from my iPhone

          >

        • Henk Noordhuizen July 18, 2018 at 9:10 am

          Here’s the article Mary tried to link to (but failed):

          https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/colloidal-silver/faq-20058061

          Expert? Don’t think so.No sources,no documentation. It’s just his personal opinion on colloïdal silver.

        • Don M July 15, 2018 at 12:35 pm

          Just an added point. Floxicies are said to be low on magnesium and part of our problem. If that is so why on earth would one want to have anything to do with EDTA if it bound up the magnesium and it was eliminated?
          Daniela’s comment “We really have to do everything on our own!” is so true.

  4. Ronna July 14, 2018 at 12:23 pm Reply

    Thanks, I live near a Costco, will try the sardines. Daniela, did your hunger come back suddenly or slowly, how did you know it was back? My stomach is starting to growl again, before no noise at all.

    • Daniela July 14, 2018 at 2:49 pm Reply

      Yes, my hunger came back but it took a while. Try those food I suggested (forgot the coconut oil, thank you Don) because they are really rich in all the nutrients and vitamins you need.
      My impression is that you’re going to be okay 🙂

  5. Ronna July 15, 2018 at 6:37 am Reply

    Thanks a lot, that is comforting to me. Did you also have head pressure? When does that pass or get better, anyone know?

    • Daniela July 15, 2018 at 7:06 am Reply

      My head pressure went away. It’s been so many years ago I don’t remember when. Remember caffeine withdrawal lasts a few weeks, so you might be going through that.

  6. Ronna July 15, 2018 at 7:58 am Reply

    Daniela how long have you been going through all this and how are you now?

    • Daniela July 15, 2018 at 9:13 am Reply

      Ronna, My story is not yours. Anxiety is a known fq adverse effect. But it does show you have a lot of energy in you, so while extremely unpleasant it’s not such a bad sign!

      • Daniela July 16, 2018 at 1:31 pm Reply

        “unpleasant” should be more like “hellish”
        It makes any other problem seem a million times worse.

  7. Joanne. July 15, 2018 at 4:52 pm Reply

    Hi Everyone,
    I posted back about a seaweed supplement that was really helping me, but it fizzled out just like all the others! I’ve taken supplements that help me so much for a while and then they either stop working or sometimes they start making me worse.
    Today I started a new supplement, and as usual it’s helping me really Good, but I don’t know if it’s gonna fizzle out like all the rest!
    Anyhow, I started drinking Essiac Tea.It’s known for curing cancer, but it also surprisingly helped other ailments that the patients had. For example diabetes, thyroid diseases, eczema ect. so I thought I’d give it a try, and I’ll post back to let you’s know how it’s going.
    Here’s a couple sites if anyone’s interested. Also, watch the video it’s very interesting.
    Rene Caisse & The History of Essiac Tea – Essiac Facts
    http://essiacfacts.com/rene-caisse/
    And here are some testimonies from people who have used it
    tea.com/essiac-tea-testimonials.html#stage4esophagealcancer

  8. Dee July 15, 2018 at 11:15 pm Reply

    Ronna, I responded to and earlier post to answer a comment of yours. See “older posts”. Dee

    • Dee July 16, 2018 at 7:02 am Reply

      Joanne, are you the same “Joanne G” who wrote her recovery story? If so…..do you still use the vitamin and omega patches? You wrote that they really helped you with your symptoms, especially dizziness. Did you experience tinnitus?

      • Joanne. July 16, 2018 at 6:16 pm Reply

        Hi Dee,
        Yea, I’m the same joanneg. I don’t know how the g got dropped.
        Anyhow, the only supplement I use every day is magnesium, which is the only supplement that gives me steady, reliable help with all my symptoms. I still have very bearable issues, but I’m constantly trying new supplements to see if they will help them.
        So, occasionally I’ll use the patches, but I don’t notice much anymore. But the Omega patch really helped me sooo much when my head was full of pressure, and that soupy dizziness, but I hardly get that
        anymore-sometimes a little when flared up but nothing like before. But yea they helped a lot with that. I would put the patch right on the base of my neck where your head and neck meet. The first omega patch I put on my neck was crazy feeling it felt like liquid moving and pressure shifting then it felt as someone was just draining liquid out of my head!! That was with first few patches then it came to a standstill, but those patches are what started the relief in my head.
        Right now, I’m trying the Essiac Tea and Chloroxygen both are helping me pretty good. The Chloroxygen immediately takes the pressure or stoned feeling out of my eyes and clears up the muddled, foggy brain feeling. But I don’t know if they are just gonna fizzle out like the others. We’ll see. I’ll post to let everyone know

      • Joanne. July 16, 2018 at 6:27 pm Reply

        Also, I did have tinnitus really bad. It’s pretty much gone now. It only comes back if something flares me up, but even then it’s nowhere near as bad as it was. I’m not sure, but i think it went slowly along with all the crazy brain pressure and soupy dizziness idk?

        • Dee July 16, 2018 at 8:41 pm

          Joanne, thanks for getting back to me! I am glad to hear that your symptoms are bearable! Do you feel mostly recovered now?? I reread your story and I can’t believe you were on all those meds for 2 months!! Did you take the cipro for 2 months? Your recovery is amazing considering how many meds you took!!! Congrats on healing after all that. You must be one strong lady to go through all of that for a little over 2 years!! I am almost 13 months out and “mostly” recovered. I still wake up early at the same time every morning with anxiety and pulsating (throbbing) tinnitus. It had gotten quieter so I hope it will disappear!!! I have leaky gut that gets real busy early in the morning! Let’s just say I need to be near a bathroom! I have other symptoms that have gotten much better like achy stiff ankles and knees that cycle now and then. Also the brain fog. When did you feel your brain fog and tinnitus finally went away for the most part???? I pray that most of my remaining symptoms will go away in the next few months. I am 62 so kind of figure it might take me a little longer to recover?? I just hope to get there and out this behind me!!! I was going to try the Probiotic you recommend VSL 3?? I take 600-700 mgs of angstrom mag everyday.

        • Joanne. July 17, 2018 at 1:49 pm

          Hi Dee,
          Yea, if you have any stomach issues I would definitely try the VSL. I tried many probiotics, but that is the only one that works amazing for me.
          If you are only 13 months out and feel “mostly” recovered that is absolutely good news! At 13 months out I was fighting for my life!! I thought I was going to every day. I just didn’t think anybody could survive what I was going through!
          Anyhow, I thank God I did.
          But I’m definitely not fully recovered because if I quit my magnesium, i get really bad. So everything is bearable so long as I take the magnesium.
          Also, I believe if my tinnitus went away yours will too. It may take a while, but just knowing it can go away helps bear it.
          To tell you the truth, when supplements would take certain symptoms away it gave me so much hope that these issues were not permanent, and hope is what I hung on to cuz everything else was so scary.
          Anyhow, I’m not sure when the tinnitus stopped. I know supplements would help it at about 2 years, and I think about 3 years out it stayed gone with just magnesium.

  9. Daniela July 16, 2018 at 9:00 am Reply

    We put 2-3 drops of rubbing alcohol in the cat’s ears and the next morning the cat stopped scratching and was very active and alert. Kind of afraid to continue because it’s so strong, but it is a human remedy for swimmer’s ears. I suggested it to counteract water in the fake silver drops but the result was dramatic. (There was never any redness or discharge in the ear, just scratching and shaking.)

    It’s so hard to trust doctors and but also so hard to trust products.

    • Don M July 16, 2018 at 12:31 pm Reply

      For what its worth………… I have a problem with itchy ears and I told my doctor that I would dip a Q tip into hydrogen peroxide and rub it around in them, but be very careful not to get very far into the ear canal.. He said better to use rubbing alcohol.

      I also lay on my side and uses a dropper to fill the ear with hydrogen peroxide and wait until it stops fizzing. Then turn and drain it. Turn over and do the same with the other ear. Dr. Mercola says that for some reason doing this with it (the hydrogen peroxide) will help to ward off or eliminate the flu.
      Vets are trained in a way similar to doctors and they only know what they are being taught about modern medicine and its arsenal of antibiotics.

      • Daniela July 16, 2018 at 1:31 pm Reply

        Your comment is worth a lot! Thanks 🙂

  10. MJ July 17, 2018 at 11:03 am Reply

    Hi all,

    Short summary:

    – Levaquin reaction in 2009
    – Have made some improvements over the years, but nervous system still needs repair
    – Current doctor is going down the “damaged GABA receptors” road, which is in line with the proven research out there and feels correct to me (or is at least PART of the problem)
    – However, I am not sure if his approach is correct. He thinks it will help if I “flood” my system with GABA by way of supplementation and a pharma drug.

    Has anyone tried increasing GABA by any method? Taking GABA supplements? My doctor says that even though the receptors are damaged, having more GABA *could* increase the amount that successfully interacts with the receptors and could help me feel better.

    I’m just not sure. I do believe that dealing with the GABA receptors is correct, I am just not sure if this is a wise approach. If the receptors are damaged and I flood my system with GABA I imagine that it could potentially backfire and make me feel worse? Could perhaps even damage them MORE? If receptors are damaged, is it truly wise to flood your system with GABA?

    Does anyone have any experience/knowledge about GABA and GABA receprtors? To be honest, researching GABA has been overwhelming and I am finding myself very confused about the best approach to take. Any insight, or links to good articles/videos on the subject, would be so very appreciated.

    The pharma drug he suggested was Neurontin (aka Gabapentin), which he said would definitely work to increase GABA (while a supplement may not). I told him I’d need to do a lot of research before taking it. Has anyone taken this drug?

    Thanks all,
    MJ

    • Don M July 17, 2018 at 11:58 am Reply

      Hi there. I’ll be watching your replies because I have the same questions about GBA. Personally I am not in favor of the prescription stuff. Prescription stuff is how we got here in the first place. The supplement route may be OK though. So supplements might not be as effective as the prescription “says the doctor”? It appears that in everything we try that going slow with it is the right way.

      • MJ July 17, 2018 at 2:15 pm Reply

        Hi Don. My doctor said that GABA supplements likely will not work because they do not cross the blood-brain barrier in most cases. The research I’ve done on my own seems to indicate that he is correct. But he agreed that I should go slow and try the supplements first — even though I am even scared to try the supplement (!).

        I really think he is on the right track, focusing on GABA receptors. The question is what to actually do with them. I think the approach here could either make me or break me. I just have a sense that flooding my body with GABA may do more harm than good.

        • Bob July 17, 2018 at 4:50 pm

          I had no problem with GABA.

    • Dee July 17, 2018 at 12:06 pm Reply

      MJ. This is just FYI with an experience I had about 3 months out after being floxed. I wasn’t sleeping well and had horrible insomnia and anxiety. I took a half mg of melatonin to help me sleep. This is a pretty low dose of melatonin. I immediately started spinning like a top and my heart rate and anxiety went through the roof. I stayed up all night. The next day I developed terrible loud tinnitus in my ears that literally sounded like a jet engine! It was so loud I could barely hear myself think let alone sleep! At that time my Doc said because my gaba receptors were so damaged that they had an opposing reaction to the melatonin. Kind of like punching back! I have not taken any “calming” supplement or med since! I am now almost 13 months out and my sleep and anxiety have improved quite a bit. My tinnitus still remains but had gotten quite a bit quieter. I hope that means my gaba receptors are healing!!! I am still afraid to take any thing that calms you down. I may be able to now but not going to take that chance as I am not totally recovered. This was just my experience and my Docs opinion. I have read that in order to let your gaba receptors repair you should not take anything calming as if you were going through benzo withdrawal? You may have luck with gaba especially after all these years! I’m suprised (and a little scared) that you still have damage after 9 years recovering. How much Levaquin did you take to get floxed? Do you feel mostly recovered??

      • MJ July 17, 2018 at 2:27 pm Reply

        Hi Dee,

        Thanks for your response. This is good to know. I took courses of Cipro + Levaquin back-to-back. 500 mg each. In total it was about a month long of being on the drugs. I also took a corticosteroid later on which made me much worse.

        I still have issues, but don’t let that scare you. My story has no bearing on yours. We are all so different. If it helps, I *do* think I got hit harder than most (not all, but most) and despite still having issues nearly a decade later I am a happy person today. Wishing you all the best in your recovery.

        • Dee July 18, 2018 at 6:57 am

          Joanne, thank you for the advice on taking the VSL Probiotic. I’m going to try it. How much did you take a day? One or two pills?? Also I was just curious what your stomach issues were? Are they better now? I wake up every morning and have to go to the bathroom in an “urgent” way and it is usually loose. After 2-3 bathroom visits I do pretty well for the rest of the day. I know my anxiety and nervous system seem to be more ramped up early in the morning as I actually wake up at 5/6 am everyday weather I want to or not with my body in 5th gear!!! I don’t know if it is an adrenal issue still trying to balance out?? Just curious what kind of GI issues you had and how long they took to get better? Any other suggestions that helped your GI heal? As always thank you so much for your help and suggestions. Every little bit helps us all in our healing journey!!

        • Don M July 18, 2018 at 7:37 am

          May I add my two cents? Have you looked into fermented foods? Dr. Mercola says that in a helping of fermented foods there are more probiotics than in a whole bottle of store bought probiotics. Fermenting is not difficult and one can ferment a variety of different foods. Once you get going fermenting costs are just the foods you ferment and some pure (iodine-less not table salt) salt. Salts…. Pure sea salt or Himalayan salt. There are several different gadgets that make fermenting easier but they are really not needed to do it.
          https://ohlardy.com/fermented-food-uses/
          Look here for an explanation of some of the gadgets.
          https://www.makesauerkraut.com/fermentation-lids/

          Eating tasty fermented foods (and getting your probiotics) will beat taking pills any day.

        • Henk Noordhuizen July 18, 2018 at 7:40 am

          The best way of treating loose stool after AB’s is,I think,spore-biotics. Those survive stomach acid and promote a healthy gut lining. Combined with inulin this combo helps cure a leaky gut,IBS and other gut problems. The cheapest source for Lactospore and Inulin I could find is https://www.bulkpowders.co.uk/lactospore-tablets.html. The raeson this probiotic survives stomach acid is because it is a spore-forming bacterium (the only one known today). Inuline is the perfect food for probiotics.

        • Dee July 18, 2018 at 7:05 am

          MJ, thanks for letting me know about your experience and I was glad to hear that after all these years you are happy regardless of dealing with your floxie symptoms. That says a lot about your strength and attitude. I personally think the mental healing is just as hard if not tougher then the physical healing. I wish you continued healing and hope you find some renewed balance in your nervous system. I hope to fully heal and after getting quite a bit better at 13 months I hope for continued healing that is let’s me put all this behind me.

        • Dee July 18, 2018 at 8:10 am

          Henk and Don. Thank you for your suggestions for GI issues! Appreciate! I will look into both!! Trying to come up with my game plan to heal this mess!!! Every little bit of info helps!!

  11. MJ July 18, 2018 at 8:37 am Reply

    To Bob from up above – did you have any *benefit* from taking GABA or did it make no difference whatsoever? Do you / did you have clear nervous system issues?

    Interested in anyone else’s comments on GABA / GABA receptors. I’m a little confused on the best approach to dealing with them. More GABA to flood into the damaged receptors in the hope that some will successfully interact? Or *less* GABA *because* the receptors are damaged and become problematic when receiving GABA?

    • Bob July 18, 2018 at 11:28 am Reply

      My nervous system issues were terrible when I was taking GABA. I took 500mg at night with 1mg of melatonin. I do believe it helped. I believe you may be over thinking this. I would take it and see if it helps.

  12. Joanne. July 18, 2018 at 8:52 am Reply

    Hi Dee,
    The stomach issues were up and down throughout this whole ordeal. As far as diahrea I always had it because of the magnesium. Also, it took me a long time to realize when I’d get sleep problems along with flashing nightmares or ugly visions, it was my stomach! So when that would happen I would take a VSL in the morning and another before bed and it would start helping within 2 days.
    As for fermented foods, I always drink keifer and occasionally eat the sauerkraut, but I never notice it helping like the VSL

    • Joanne. July 18, 2018 at 8:57 am Reply

      Also, i never took the vsl every day more than a week, not that that was Good, I was just scared of everything. So, basically I just used it as I felt I needed it.

      • Dee July 18, 2018 at 10:02 am Reply

        Joanne. Thanks for the info on taking the VSL!! Is your stomach healed now? Hopefully so!!!

        • Joanne. July 18, 2018 at 10:23 am

          Yea, but im always trying to see if i can stop the magnesium and when I do that everything starts getting bad again.

      • Dee July 18, 2018 at 10:30 am Reply

        Joanne, my diarrhea was out of control when I first got floxed when taking pills and powder. When I switched to the Angstrom liquid magnesium it made a HUGE difference in controlling my diarrhea! Have you tried Angstrom at all?? It was like night and day and it also gets better absorbed. I take 1 oz at a time throughout the day about 4 x and add magnesium theronate pills in the evening since it crosses blood brain barrier to help my sleep a little more.

        • Joanne. July 18, 2018 at 10:48 am

          Yea, i did try Angstrom and Remag, but I couldn’t get my dosage right, so I went back to Doctor’s Best which im doing good on, and now that i’ve cut that to 400mgs a day i no longer deal with diarrhea. But thanks for thinking of me😊

  13. Ronna July 18, 2018 at 2:25 pm Reply

    Has anyone ever taken a Sudafed for head congestion?

  14. Ronna July 19, 2018 at 3:45 am Reply

    Dee, I know everyone says we all have our own story, but your issues sound very similar to mine. I wake up at 5-530 am whether I want to or not. I have early morning GI issues also. It has been 19 months for me and I am just now noticing an improvement in my symptoms. It is slow, but encouraging. My weight is improving and GI issues sort of normalizing. I slept until 7:30 the other day, not sure why. I tried every diet and supplement. Nothing made a difference. I know that stress is a bad thing, I am able to work part time now, 2 days a week. Don reminded me that distraction can be your best friend. Keep going and doing things no matter how bad you feel. Being with people helps me a lot. I am 66 years old, retired, but went back to work to help my brain. I now see a Holistic Medical doctor which has made a world of difference for me. I am considering medical marijuana, wonder if that has helped anyone? Head pressure is my main issue now, searching for ways to relieve that. Any suggestions?

  15. Ronna July 19, 2018 at 4:41 am Reply

    Joanne, Are you still using the Omega-3 patch? I only see a child’s one on the internet, where do you get it?

    • Dee July 19, 2018 at 7:24 am Reply

      Ronna, we have a lot in common!! I am still waking up at 5/6 am every morning and of course rushing off to the bathroom!! I still deal with that, mild anxiety and pulsating tinnitus. I have other things that cycle in and out but in general are pretty mild. We are both in our 60s. I do believe our age might “slow” down our healing but even if we crawl I think we will make it!! I try to keep thinking positive and believe in moving forward and our ability to heal! That is a good thing you went back to work part time. I definetly think that helps your frame of mind and engage with others and a normal life! The mental part of healing is so tough! I am a retired PE teacher(just retired! I could not teach my last semester as after being floxed my CNS was hit really hard. I was pretty debilitated. Let’s just say I was a wreak….a walking zombie! After 13 months I am so much more improved and able to live more normal now. I do have tough days when I am struck with a lot of fear and worry. I just try to remain positive and believe I can heal! I hope everyday for a full recovery. From reading the floxie stories I see that a lot of floxies take a year in a half to two years to recover so I keep praying that I will get there! I wish the same for all floxies going through this tough journey. How much FQ did you take to get floxed??

      • Dee July 19, 2018 at 8:30 am Reply

        Ronna, Not sure about ways to help head pressure. When reading stories I think for most it goes away in time!!😀

  16. Anna July 19, 2018 at 4:35 pm Reply

    I had ONE pill of Cipro, then read about the dangers, and immediately stopped taking it, then started Bactrim. A day after the one Cipro pill, all my bones/joints starting popping, knees were sore. Then day two I woke up with my eyeballs feeling tight, vision blurry, rubbed one eye and felt a tense tearing. Went to the ER and they said I did not have a torn retina, but more likely inflammation and tight tendons. Has anyone else here experienced tightness in eye tendons from this poison? Also, has anyone only taken ONE pill of this crap and how were you affected by that dosage? I am currently taking 750 mg of Mag Citrate & 2000IU Vit. D and I am feeling better today.

    • Madge hirsch July 21, 2018 at 2:41 pm Reply

      Sometimes my eyes make clicking noises when I move them – I think this is the tendons. 2000iu of vit D is a fairly small dose. You might need to double that.

      • Anna July 21, 2018 at 5:21 pm Reply

        Thank you so much for the Vitamin D advice.
        I increased my intakes to: 5000IU – D3 ; 1200 mg -Calcium ; 900mg – Magnesium; CoQ10- 200 mg

        • Barbara Arnold July 21, 2018 at 10:43 pm

          You need K2 to help the VitD absorbtion as well

  17. rohit aggarwal July 20, 2018 at 2:03 am Reply

    nice

  18. Ronna July 20, 2018 at 3:40 am Reply

    Dee, I took Levaquin several times during the last 7 years for pneumonia or sinuses, then they gave me Avelox with prednisone and that pushed over the edge. Never the same since. Mornings are always bad for me. The head pressure is the worst. GI improving after 19 months. Tinnitus still there most days. That was my first symptom. Had it years before I got real sick. I think I was slightly floxed for years and didn’t know it. I had bad insomnia one year before I got real sick. Dry mouth real bad still. I keep pushing myself to continue with life as normal, that’s the hardest part, My husband is not much help these days as he thinks I’m crazy, it’s so sad for me. I hope your life is better.

  19. Don M July 20, 2018 at 6:02 am Reply

    Lets talk about COLLOIDAL SILVER. Here’s a bit of history about Colloidal Silver.
    https://www.purestcolloids.com/history-silver.php
    Colloidal Silver is an “anti-infective”. Call it an antibiotic if you like but it is a germ killer.
    It has been around for a long, long time. The Brigham Young University tested it and found it to be effective against over 600 different pathogens. And pathogens can not acquire resistance to Colloidal Silver.
    It can be used internally and externally.
    It can be use to sterilize the kitchen counter, sterilize the clothes in your washing machine.
    It can be used anywhere one wants to kill germs!!! Colloidal Silver will will not cure a floxed person but it can help in many ways.
    I won’t expound any more. Just read the “A Brief History of The Health Support Uses of Silver” in the link above.
    May I add one more thing. Argyria. It is something that shows up on many “negative to silver” web sites. Today Argyria only happens with a “GROSS” misuse of Colloidal Silver.

    • Dee July 20, 2018 at 9:08 am Reply

      Ronna, I’m so sorry that you are going through this and especially that you are not being understood or supported by your husband. That has got to be very hard on you. But you are carrying on and you are continuing to fight to get well and find normalcy in your life. That says a lot about you and the strength that you have inside! You keep on keeping on for YOU!! It may take awhile for some of remaining symptoms to disappear or get a lot milder but don’t give up. I think month by month things will become more manageable and you will slowly get a more normal life back. Keep your faith and keep crawling, walking, moving forward every way you can!!! I had taken cipro for a UTI a year before being floxed and then 2×500 mg pills of cipro a day for 3 in a half days totally 7 pills. I started feeling neuropathy in my legs and stopped taking the meds. My nervous system got hit pretty bad. I did have probably 15-20 symptoms which many have disappeared or gotten better. So hence I am still dealing with my few lingering symptoms. My insomnia for the first several months was horrible so at least I sleep through the nights most of the time now but deal with a very early wake up. My joints in my knees and ankles would ache and be stiff and that is a lot better. I still will feel it now and then though. I had dry eyes and mouth too which is almost back to normal. It is still a work in progress as you know well but it is progress. You have shown a lot of improvement so continue to be encouraged by that!!! I am glad that your stomach is improving!! Did you take anything to help that?? Is your tinnitus any better then it was when first floxed?? Mine has gotten quieter but not gone yet and gets worse when I am anxious. All we can do is stay positive and hopeful and take baby steps to move ahead. We are doing it everyday despite the setbacks and remaining symptoms. One day at a time and one step at a time we will get there. You have people supporting you here and of course understanding the tough journey you are on so keep up your inner strength and your spirit to get well again! Your body will listen to your thoughts and intentions! ❤️

  20. Ronna July 20, 2018 at 11:43 am Reply

    Thanks so much Dee and all for the support, I’m going through a rough time now in my personal life due to all this sickness and symptoms. I will carry on the best I can do but it’s hard to mend a broken heart.

    • Dee July 20, 2018 at 4:44 pm Reply

      Ronna, stay strong and keep the faith. You can heal your heart too. Be kind and gentle to yourself. You are worth it!💐

  21. Danny July 22, 2018 at 12:34 am Reply

    I recently went to a urologist.. the nurse took my medical history and ongoing symptoms. My primary dr wouldn’t refer me to a urologist for possible prostate cancer. I have ALL the symptoms, even most symptoms from the spreading. Anyways., Dr came in sat down and said most symptoms are common for prosthesis. He prescribes me 500 mg of Cipro. 2 times a day for 10 days and schedules me an appointment to have a scope enter my penis.. “look for blockage and/or swelling of prostate glands”… how the hell is he gonna prescribe me a high level antibiotic for something he doesn’t know I have?!! Shouldn’t he prescribe a lower effective antibiotic? He if gonna diagnose me with prosthesis then why the prostate exam for the cancer. He said himself he didn’t think it was cancer. …. I’ve been reading up all day… Dr’s will prescribe Cipro do to the fact it can cause “false” positive results.. resulting in “surgery “ …. I’m trying to get my medical records from 2011-2014… I was treated for Lyme disease and I’m positive they gave me Cipro! My body is falling apart.. knees hips ankles shoulders wrists fingers back neck elbows all are so very stiff and constantly going numb and tingling… last Dr blames it on the Lyme disease… well a new Dr came to Clinic … she says I don’t nor have I ever had Lyme!! I’m only 45 yrs old and was told last week… buy a comfy recliner cuz there’s nothing you can do

    • Don M July 22, 2018 at 1:59 am Reply

      Doctor’s profession is called a “practice”. Seems that the reason is because they do constantly “practice”. 57 years ago I came down with a UTI. I was referred to a young Urologist who seemed to be “procedure crazy”. Now I realize that every procedure meant an additional charge on my bill. More procedures more money in the pocket. At every visit he had to run his tool through my urethra. His “stated reason” was that he was dilating it to be sure there were no restrictions. This caused the infection (eColi) to become embedded in my prostate.
      For 57 years I was shuffled among 7 urologists. Because of the gastric problems all the antibiotics caused I was shuffled among 3 different GI doctors. Then on to 2 different infectious disease doctors. I was give a “TON” of different antibiotics. None of them cured the problem.
      Then Cipro came on to the market. I started with it and it seemed to cure the problem, but then after a few days of being on the Cipro the problem would return. Why? Because it was found that I had a compound infection. I was dealing with both eColi (gram negative) and Enterococus (gram positive). Now (the doctor said) Cipro is supposed to kill off both gram negative and gram positive bacteria, but Cipro was not killing off the gram positive bacteria. The doctor would stop the Cipro and switch me to Amoxicillin. I would take Amoxicillin for a few days and then the problem returned again. Then it was back on the Cipro again. This went on for several years. I asked the doctor why not use both antibiotics together? He would never approve of it!!!!! I finally (on my own) took them both together and and stopped the “merry go round”.
      For the past 20 years if I had a flair up I would use both Cipro 500 and Amoxicillin 500 together. It would stop the flair up.

      If you research it you will find that there is a term “persistants”. Persistants are bacteria that have become mutated and are very resistant to antibiotics. They (especially eColi) can when exposed to antibiotics go into a state of “hibernation” and wait until the antibiotic is gone, then reappear. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1449587/
      Bottom line for me is………….. This “procedure crazy” Urologist with his persistent use of his tool to dilate my urethra embedded the bacterias in my prostate. When they were treated with the antibiotic combination they would retreat from the urinary tract and lay dormant in my prostate until my resistance dropped. When resistance became low they would flair up again.
      It is very doubtful that any doctor will support this (my) diagnosis but if you read and research “persistents” you will find this to be true. Google persistent bacteria.

      I can’t tell you how to proceed but maybe my history will give you some clues on what may really be going on and how to proceed with your problem.

      There are things that you can do to help your problem but looking back on my history I doubt that you will find the answers at your local MD’s office. Read the different “floxed by Fluoroquinolones web sites. There are many good suggestions there.

      I would like to comment on one thing though. Do some research on Colloidal Silver. Colloidal Silver has been around since before the birth of Christ. Colloidal Silver has been used in many different ways and in many different places through out the years.

      I have been floxed by all the Cipro use and recently was given an IV of Leviquin.
      I am 84 now and probably will never totally recover from the floxing. It is just a matter of learning the best ways to live with it.
      I did not know about all the problems with Fluoroquinolones until I began to read about them on the Internet.
      No doctor ever mentioned or admitted it.

    • Don M July 22, 2018 at 2:45 am Reply

      Danny……….. Read this story on floxie hope. She lists many different supplements that she used and claims she has conquered her floxing. https://floxiehope.com/lisa-cs-healing-story/

      After my long dissertation I thought that maybe I should mention a few things that I do now.
      “BETA SITOSTEROL” Beta Sitosterol is a supplement that is highly advertised and does help to shrink the prostate. I use it daily.
      D-MANNOSE…. D-Mannose is a supplement that I also use. D-Mannose works by making the urinary tract too slick for bacteria to adhere to the walls. Science says that eColi has receptors on it’s surface that D-Mannose adheres to and kind of balls the eColi up to where it can’t stick and is washed out. Many times you will here a doctor (Urologist) recommend that you drink cranberry juice. Why? Because cranberry juice has D–Mannose in it. Most cranberry juices (to make them palatable) are high in sugar. Sugar is not good.
      Hence pure D- Mannose capsules are a better and more effective way to go.
      I use D-Mannose regularly. As a deterrent from the bacterial UTI’s I take D-Mannose a couple days a week. Be sure you are taking enough each time.
      There are also supplements that contain several different urinary tract friendly things.

      This is NOT a recommendation because I am NOT connected in any way with the medical profession. It is what I do to try to mitigate my urinary tract problems.

      • Andrea July 22, 2018 at 7:55 am Reply

        Hi Don, I’ve used many supplements containg beta sitosterol : (serenoa repens, pygeum, stinging nettle) but all they did was making me pee more. Not exactly what I was expecting or hoping. Have you ever noticed that?

        • Don M July 22, 2018 at 9:34 am

          “Have you ever noticed that”? The urgency I just chalked up to chronic prostatitis. Also being one of the side effects of being floxed.

    • Bob July 22, 2018 at 8:14 am Reply

      Have you tried ozone or hydrogen peroxide IV`s.

      • Danny July 22, 2018 at 10:11 am Reply

        Bob….Ozone or hydrogen peroxide?? IVs?? Are you being serious??

        • L July 22, 2018 at 11:35 am

          I’ve tried to stay off this site for a while, but felt I had to respond to this. H2O2 IVs quite literally saved me. They allowed me to get off of inhaled steroids after I was severely floxed. I would not be here today, had I not had them.

          As for Ozone, it is remarkable and has helped countless floxies as well as lyme disease patients. Just find someone reputable. (I also had ozone injections in both knees for torn meniscus post floxing.) If you are not familiar with a treatment, please withhold your fear-mongering.

        • Barbara Arnold July 22, 2018 at 10:12 pm

          Great to have you back my floxie friend. Yes your absolutely right with ozone and H202. As I’ve said before I had ozone Autohemotherapy and I know without a doubt it was one of the main things that helped me. Your also right to say make sure you find someone who’s reputable. My ozone Doctor has 20 years experience. I still go for the odd one now and again. I have found also that Propax NT factor Lipids is really helping. There is a lot of research and evidence to say they help repair the mitochondria. I am only taking magnesium malate and NT factor at the moment so I can measure the improvement. The only other thing I take now is CBD oil for sleep issues. Getting the right one and dose is important but when you do it really helps. Nice to know your around L. xx

        • Bob July 22, 2018 at 6:32 pm

          .Yes, They may be the most effective treatments available. Do your research.

  22. Joanne. July 22, 2018 at 7:26 am Reply

    Hi Everyone,
    I just wanted you all to know I had to quit using the Essiac Tea because it starting flaring me up, which I should of known that it would because it has bacteria killing power, and anything that kills bacteria always flares me up.
    So, I think I’m gonna stop trying different supplements to try and get rid of my remaining symptoms and just do magnesium, but i’ll have to do probiotics
    for a while to replace some of what the tea killed off.
    I just wanted you all to know how it working or I should say not working.

  23. Anna July 22, 2018 at 7:50 am Reply

    Can anyone here weigh in on steroid drops in the eyes, after Cipro? I had one pill, and got blurry vision and eye swelling a few days later. I am still recovering, and the eye doctor suggested steroid drops. I’ve heard oral steroids or injections are a bad idea after Cipro, are steroid drops also dangerous?
    Also, has anyone flown after Cipro? Are there any concerns about flying a 4 hour flight after? I can’t think of any reason why cabin pressure would agitate a Cipro reaction.
    Thanks for any input —

    • Barbara Arnold July 29, 2018 at 9:47 pm Reply

      Anna, when flying I always load up as much as possible on COq10 Ubiquinole. As flying depletes this from the body according to Kerrie Knox (The Fluroquinolone toxicity solution)
      Also I would not take any steroids whatsoever if it was me. The person that gave you cipro should be struck off. The ignorance of these Doctors is astounding.

      • Anna July 30, 2018 at 6:41 pm Reply

        Thank you for the knowledge, Barbara. I do have Coq-10, so I will pay more attention to that supplement.

  24. Pauline July 23, 2018 at 4:49 am Reply

    Has anyone ever taken any benzos? They are another group of drugs that should be banned.

  25. Kyle July 24, 2018 at 7:06 am Reply

    I’ve had on and off I guess it’s brain fog, my body feels pretty good after 4 months of being floxed, but my head seems to continue to be hazy and It’s hard to explain but I will call it brain fatigue. I felt this way about 4weeks after being floxed and it went away for a month or so came back and lasted for a 7 or 8 days and then went away, it has come back it’s been 7 days and still hasn’t lifted. I take fish oil, I was also taking an adrenal energizer supplement that doesn’t seem to be helping to much. Has anyone had similar symptoms? If so is there a supplement that helped?

    • Don M July 24, 2018 at 8:07 am Reply

      Kyle……….. I have a constant problem with brain fog and fatigue. I have been floxed. Of course I am 84 so my age is the excuse that all the doctors use. You asked about a supplement that might help. MAGNESIUM…. Among many other things it is a muscle relaxant. According to doctors Mercola and Carolyn Dean proper magnesium level is very important to the body. One caveat though. They both say that when trying to get enough magnesium into the cells of the body pills are only from 4% to 20% effective and the diarrhea problems come into play before the magnesium is up to optimum level. Dr. Carolyn Dean sells a liquid magnesium product called ReMag. She claims that it is much, much more effective than pills because it bypasses the digestive system and is absorbed directly into the cells of the body. Another liquid product on the market is Angstrom magnesium. Research them.
      Another thing that is supposed to help with brain problems is Bacopa Monnieri. Research it.
      It is included in all the “fancy” high priced formulas that are advertised.

      Point…………. The traditional and “cheap” magnesium test is to test the magnesium level in the blood. It’s a very poor over all indicator because it is like blood sugar or blood pressure. At any given time it can change dramatically. The more accurate test of real magnesium level is the RBC blood test. It measures the magnesium level in the red blood cells. Research it.
      In the US there are several online places that one can order the RBC blood test without a script from a doctor. Google for them.

  26. Anna Owens July 31, 2018 at 1:31 pm Reply

    Hello,
    I am a floxie survivor and post things on my Facebook page from time to time about the dangers of flouros. Today, a physician decided to post on my page that Flouros were indeed safe. He was very angry. I would like to know if anyone would like for me to tag them in a response to him. I think it would be helpful if he could have actual people as references who have been hurt. It might not change anything, but I am always fighting for change for this community. If we change one doctor’s perspective, maybe we save some people from having to go through this.

    • Lisa July 31, 2018 at 2:20 pm Reply

      Hi Anna,

      I tried to look you up on facebook but there are lots of Anna Owens’ on FB and I wasn’t sure which one was you. Can you please send me a friend request and I’ll comment? https://www.facebook.com/lisa.bloomquist.90. Anyone one here can send me a friend request – if I don’t respond, send me a message too.

      Regards,
      Lisa

    • Don M July 31, 2018 at 2:25 pm Reply

      With all the information about the hazards of Fluoroquinolones that is available this doctor is either a blooming idiot or a troll. Either way he is way off base claiming that Fluoroquinolones are”safe”. What in his mind constitutes “safe”?

      • Pauine Neildi August 11, 2018 at 2:34 pm Reply

        Don Have u got a link to the company that does mag levels please, thank you.xx

  27. Don M July 31, 2018 at 2:42 pm Reply

    In the interest of trying to get the word out about the “sometimes” devastating after effects of Fluoroquinolones I have put my trusty printer to work and made up a business sized card titled “Fluoroquinolone Toxicity Syndrome”. Card front…………………
    Fluoriquinolone Toxicity Syndrome
    What is it?
    Being poisoned by the Antibiotics
    Cipro, Levaquin, Avelox, Ofloxacin and others of the same antibiotic family

    Card back ………………… References to web sites about Fluoroquinolone toxicity. https://fqwallofpain.com/
    https://fqresearch.org/
    https://floxiehope.com/
    http://www.slweb.org/ftrcfluoroquinolone.html
    http://www.myquinstory.info/

    I plan to hand them out to anyone who may be interested in avoiding being floxed.
    Think about it. Maybe you might want to do the same thing.
    I don’t know if this will post as I type it, but the message is still there.

  28. Pauline August 6, 2018 at 5:15 am Reply
    • kelhatesfq August 14, 2018 at 1:59 am Reply

      Does anyone have suggestions for GI distress? I cannot eat anything but a few very few items and now weigh 127 lbs. My stomach has been seen by a GI Doctor but they’re lost. I can do very little and it’s like the muscles around the digestive tract from top to bottom are acting off… I’m very lost

      • Don M August 14, 2018 at 6:06 am Reply

        Have you tried fermented foods? Not the kind you buy because many of them have been pasteurized (heated) to kill bacteria so they are worthless as a probiotic. Ferment your own and get the good bacteria into your gut. I am using cabbage as the base and adding various other things to change the taste. It is said by some “experts” that there are more beneficial bacteria (probiotics) in one helping of fermented food than in a whole bottle of store bought probiotics. Plenty of good bacteria in the gut is essential for over all health. There are kits that can be bought to make home fermenting easier.

  29. Ray M August 11, 2018 at 3:20 am Reply

    Hi

    I wasn’t sure if I should post my story or not, but since I found this site invaluable, I think I should. I hope you don’t mind me just jumping in and posting my story.

    I took 38 ciprofloxacin tablets of the 60 I got from the doctor for a suspected UTI/prostatitis in April 2016.

    A few days into the course I got pains in my heels. I didn’t link it to the antibiotics, I thought I needed to buy new shoes.

    My doctor said it was ok to take ibuprofen for my pains, so I was taking 4 a day alongside the antibiotics. As the days went by, things started to get worse, I couldn’t walk properly. I started getting stabbing pains all over my body and I had my first ever panic/anxiety attack. Then organ pain. I couldn’t eat or drink water without getting stomach pain. I couldn’t breathe properly, I couldn’t cough properly. Arthritis like pain in knees and wrists. My heart rate went from 69bpm to 98bpm at rest. I was dizzy all the time. I felt nervous. I couldn’t tell if I was hot or cold. I woke up many times completely numb from the waist down. My arms, legs, feet and toes tingled. I would wake up with lock-jaw. My teeth would hurt, I needed 4 root treatments in one week because of exteme grinding. I got migranes and extreme head pressure. My finger and toe nails went ridged, brittle and dry. My head and leg hair started to fall out. The snot in my nose changed colour. My mucous membranes were dry. My eyesight got worse, I needed spectacles and eye drops every night. I couldn’t talk properly – it was difficult to put a sentence together without stuttering or using the wrong words. I couldn’t remember things. Couldn’t sleep then nightmares when I did. I had diarrhea one day then constipated for days. I couldn’t drink coffee or smoke a cigarette without taking a full blown panic attack. I stopped sweating completely. I would cry and shake. I was frightened to have a shower. I lost 2 stone, mostly muscle. I’ve aged 10 years, My skin looked 10 years older. Many times I thought I was having a stroke or a heart attack. I couldn’t function. Death seemed like a good option. I planned to jump of the forth road bridge, I even started to write suicide notes for my loved ones.

    I found floxiehope but I would take panic attacks reading the stories (That’s hard for me to believe now). I stopped the cipro on day 19.

    The first things I bought was magnesium bath salts, oil and tablets and probiotics. I went on to buy thousands of pounds worth of supplements over the months in a desperate attempt to heal myself. I paid for endoscopies, cystoscopies, MRI scans, ECGs, kidney scans, (couldn’t wait for NHS appointments) I wasted a lot of money! I’ve spent all of my savings. I noticed some supplements would help a tiny little bit so I started to stick to things that worked for me. And slowly, very slowly I started to stabilize. It took me a year and a half to feel a bit better but I would relapse over and over again. I was frightened to say ‘I am feeling better’ because the next day I would feel ill again. Then almost 2 years after my first dose of cipro (April 2018), I woke up one morning feeling good and thought ‘I do feel better’, I even said it out loud. It was weird, because over three consecutive days I became myself again. My mind was back to how it was before cipro. On the third day I was feeling completely normal. I was me again.

    What a journey this has been. A fkn nightmare. It was like being trapped in a nightmare unable to wake up. Of course, no one including the doctors could understand what I’ve been through (except you guys). But I’ve learnt a lot and I would even say that my life is better now. I no longer smoke or drink alcohol. I’m fussy when choosing what to eat or drink. I can make kefir milk and kefir water! I’ve made kombucha, sauerkraut and fermented vegetables. I know about probiotics and antibiotics. I feel a bit like my own personal health guru.

    Anyway, I know what you’re all going through. It took me 2 years to recover. That suspected UTI/prostatitis that my doctor gave me cipro for turned out to be a massive bladder diverticulum. I had a laparoscopic bladder diverticulectomy and bladder neck incision last week. I should never have been given cipro, because I never had an infection in the first place.

    Also after ciprofloxacin I had a bad reaction to nitrofurantoin but I’ve had no issue with trimethoprim or fosfomycin (I needed a urinary catheter for a few months which led to infections). I had no reaction to the injections at the dentist or anesthesia at the hospital. I avoid pharmaceutical drugs and I rarely take pain killers of any sort. I used ice packs and hot water bottles for pain relief.

    So now I have to build my body back up. I’m only 9 and half stone (used to be 11 and a half) and 6ft tall. I’m skinny and a frail looking man but I can work on that.

    *A big thank you to Lisa and everyone on this site, the stories and posts helped me a lot.*

    • Dee August 12, 2018 at 6:49 am Reply

      Hi Ray! Congratulations on your recovery!! Did the cipro “cause” your kidney/bladder issues?? I wish you well on recovering from your surgery too! You mentioned “a few” supplements helped you recover. Which ones do you think helped? Do you feel symptom free now? So happy to read your story as it always gives us floxies who are still in recovery hope!!!

  30. Andrea August 12, 2018 at 2:00 am Reply

    Hey Ray, I’m Andrea.
    I’m happy to hear you’re feeling better now. But reading your story, as everyone else’s story I’ve read, made feel really sad and angry. I too was prescribed FQ for a “suspected” UTI. Actually that doctor, already knew there was no UTI, but “according to the protocol” you have to prescribe it, even if there’s no infection…these morons.
    I too have many problems with my bladder/urethra. That of course, only increased after the FQ, funny isn’t it?
    Anyway, from the exams I’ve done, I’m probably suffering from a bladder neck sclerosis. And also my bladder is “weak”. Doesn’t “push” too well. I don’t want to get surgery, because of the unpleasant side effects that this procedure involves ( dry ejaculation), plus, I’m not really sure it’s going to bring real improvements in my case. If you dont’ mind, can I ask you what have you noticed after the bladder neck incision, and what were your symptoms before the surgery, and if you find it helpful?
    Thanks a lot.

    • Ray M August 12, 2018 at 3:34 am Reply

      Hi Andrea, nice to meet you.

      I had the bladder neck incision 2 weeks ago and I’m still recovering from it (My xray last week shows that it’s not healed yet and urine is sitting in the bladder neck). I’ve got a large thick catheter in right now so I’ve not had a chance to pee normally yet. Of course it stings like hell (I’m sitting with an ice pack on my perineum at the moment).

      The professor couldn’t find out what caused my diverticulum so he gave me the incision anyway, as it will guarantee I’ll be able to pee with no problems.

      I’m 44, don’t have or want children now so retrograde ejaculation (dry ejaculations) doesn’t bother me so much. He told me I have a 50/50 chance of this. Of course I hope that I can ejaculate normally, but so long as I can pee (and orgasm) without pain I’ll be happy.

      The main problem I had was from the diverticulum – when I tried to pee, instead of it coming out the urethra it was going into the diverticulum and I’d only get a little bit urine out. So I went into urinary retention (was holding 2 litres at one point). My options were – indwelling (foley) catheter for life or ISC (Intermittent self-catheterisation) for life. I hated both but I was lucky to find one surgeon in scotland that was competent to do the operation, so I took that option. He said the op was a success, but I wont know for another few weeks yet. First they’ll remove this catheter, then they’ll remove the kidney stents. Then I’ll know if it really has been successful.

      You say ‘probably suffering from a bladder neck sclerosis’, can I ask what tests you’ve had? I ask because I orignally thought it was bladder stones or a urethral stricture I had, but of course it was neither. The MRI scan revealed it, as did the cystoscopy.

  31. Don M August 12, 2018 at 5:31 am Reply

    An alert that all should know about. Do you take blood pressure medication? If you do read this…………….. https://www.faithfamilyamerica.com/fda_recall_of_blood_pressure_drug_worsens_more_drugs_included_as_scary_details_revealed?utm_source=FFA&utm_medium=facebook

    Seems that some blood pressure medications have been found to contain a carcinogen.
    The contaminated drugs were made at a lab in China. They were then repackaged by pharmaceutical companies worldwide.
    If you are using a medication to help control your blood pressure for your safety check into this.
    Interesting how the FDA appears to be so quick to take action over this particular class of drugs but is rather lackadaisical about Fluoroquinolones.

    • Dee August 12, 2018 at 7:57 am Reply

      Hi Ray! Congratulations on your recovery!! I’m very happy for you!! Did the cipro “cause” your bladder issues?? I wish you well on recovering from your surgery!! You mentioned that a few supplements helped you heal? What supplements do you feel were most beneficial to you?? Also I guess you did ok on taking other antibiotics for repeat infections you had??? Are you symptom free now and feel fully recovered?? So glad to see you feeling normal again!!! Way to go!!!

      • Ray M August 12, 2018 at 9:44 am Reply

        Hi Dee. Thank you! You sound well. I had bladder issues first, then took 38 cipro tablets with ibuprofen, despite no infection. I’m fully recovered, I feel great now.

        I found fosfomycin antibioitc worked well for UTIs. It’s different in the sense that you take just one dose mixed with water (tastes like orange juice). I think it was designed for women with cystitis but works for men too. It doesn’t get prescribed often because it’s expensive. I had no side effects whatsoever and was also given a few boxes to take prophylactically when I had a catheter.

        These are the things that were most beneficial to ME. If I was on a budget these are the only things I’d buy:

        Magnesium Oil, Epsom Bath Salts and Soap, Magnesium Citrate
        Probiotics with prebiotics (worked my way up to 100 billion per day, reduced when I learnt how to make kefir milk)
        Organic Apple Cider Vinegar (every night before bed, diluted with filtered water)
        Colostrum (read a story here from Ruth and tried it)
        Milk Kefir (home made)
        Liposomal Glutathione (take too much and I would spin)
        Olive Leaf extract (for a couple of months only)
        Dental Guard (wish I used one as soon as I got floxed)
        Water Filter
        —–

        If I had money to spend i’d also dabble with (and still do):

        Liposomal Vitamin c (with vit d3)
        Organic Argan Oil
        Organic Olive Oil
        Manuka Honey (Highest UMF I could afford, swapped out sugar for manuka)
        Organic Unpasteurised Sauerkraut
        Organic Bone Broth
        Kombucha drinks
        Liquid Iron Supplement (with B vitamins) (every other day)
        Multivitamin (every other day for a couple of months only, I couldn’t eat much fruit because of the stomach pain)
        Water Kefir (single and double fermentation, homemade, cheap to make)
        Calcium with Magnesium Supplement
        Fermented Vegetables
        —–

        Things that made no difference to me, some causing me more stomach pain:

        Broccoli Sprout Extract
        Matcha Tea (caused me more pain and mild panic attacks, but managed to go through a dozen tins and still drink occasionally)
        Dandelion Root Tea
        Mastic Gum (caused me more pain)
        Coconut Oil (at first soothing then caused me pain)
        Elderberry Syrup
        GSE Liquid Concentrate
        NT Factors Energy Lipid Powder (gave me energy but didn’t soothe my stomach)
        Cod Liver Oil/Omega 3 Supplements (salmon/trout twice a week is better)
        Candida Cleanse (thought I had candida or H Pylori but didn’t)
        Enzyme Digest / betaine HCl (would burn my stomach a little bit, gave up)
        COQ10 (made sense to try it, but no real difference)
        Marine Collagen
        Echinacea liquid
        Colloidal Silver (had high hopes for this, but no difference)
        Goldenseal

        Of course I stopped all fluoride and through away deodorants and products that contained aluminium. Caffeine (like nicotine) was bad, it’s a serious irritant. I allow myself one cup of coffee a day now. I had one earlier and it’s like rocket-fuel, in a good way.

        In hyndsight I think time is the great healer more than supplements, but those above helped me a little bit. Magnesium baths and oil helped me the most, followed by ACV. But as you’ll know, there’s no magic bullet here.

    • Ray M August 12, 2018 at 10:29 am Reply

      Hey Don, Have you seen this updated Fluoroquinolone safety alert from the FDA, posted a month ago? Apologies if this is old news, but it’s new to me:

      https://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm612979.htm

      • Dee August 12, 2018 at 11:46 am Reply

        Ray. Thanks for getting back to me with lots of info!! I do appreciate!! I am 14 months out and feeling half human again. I still have some lingering symptoms that are hanging on! I hope in next few months they will let go!! I had a lot of CNS issues initially that have improved quite a bit! I’m still dealing with some mild brain fog/dizziness but much better. I have some tinnitus and I wake up in the morning with anxiety, throbbing ears and very urgent bathroom needs!! Although even all of that has made improvement over the past year. Did you have tinnitus or insomnia at all?? Curious if you experience neuropathy/tendon/muscle issues?? Would you say you felt “mostly” recovered by a year in a half? I am considering colostrum for my stomach as I get morning diarrhea. I’ve seen quite a few floxies seem to respond well to it?? Thanks again for your feedback. It means a lot!! Trying to keep my faith for a full recovery!!!

        • Ray M August 12, 2018 at 2:11 pm

          Hey Dee. I didn’t have tinnitus as such, mostly pressure in my head and behind my eyes. Of course I had neuropathy/tendon/muscle issues but that’s all gone. My muscles are tiny now so I’ve been using dumbbells, it was sore at first but now if feels good. I have to push myself to exercise but I feel better after it. Even at the height of my floxing, I took a walk every day (limping all the way). I found the probiotics helped with diarrhea and constipation, but I was also passing a mucous-like substance (I thought I had IBS or IBD). When the stomach pain stopped, so did that. The colostrum was best to take early in the day, some people say it gives them energy and might keep them awake. Just buy a small amount in case it doesn’t work for you or you might want to try two different brands.

          For what you say and by the tone of your post, I bet you’ll be back to normal in a few months. Just keep positive, you will get through it. If I can survive 38 cipro tablets, there’s no reason why you wont make a full recovery. Good luck, don’t get stressed, ignore the minor symptoms, think of how much you’ve improved over the last year. It’ll all be over soon, I promise you 😉 Take care..

        • carolyn August 12, 2018 at 3:23 pm

          thanks for the info Don re lab tests.
          The bp drug containing the carcinogen is called Valsartan.x

      • Don M August 12, 2018 at 12:20 pm Reply

        Yes I did. The biggest problem is the doctors and the rest of the medical profession. They seem to be too much know it all and are not paying attention to the reality here. I can only call it ignorance on their part.

        • Dee August 12, 2018 at 4:27 pm

          Ray. Thanks for the info and especially the encouragement!!! I hope I too can write my recovery story soon!! To continued healing and recovery for all floxies fighting this battle. Well wishes to you on recovering from bladder surgery. I will try and stay positive and not let setbacks or relapses get me down. Blessings. D

  32. Andrea August 13, 2018 at 4:15 pm Reply

    Hey Ray, I’m answering your question here.
    I’ve done urodynamics, Cystoscopy and Cystography. From these exams it seems like I have a bladder neck that’s too rigid and a slight stricture in my urethra. Now every doctor I went to, told me a different thing. Once again, these morons…One told me to get the surgery, another one told me that there was nothing wrong with me, and it was probably “all in my head”, expecially because “there’re no proofs that FQs cause these symptoms”, and the other one said to do nothing and just keep the things the way they are.
    I’ve a constant pain in my groin area, and sometimes it’s difficoult to urinate and expecially to empty my bladder. I’m taking an alpha blocker right now ( wich can be consideren a blood pressure drug, thanks for the info Don M.) but with very few results. If it wasn’t for the bladder issues, I will consider myself 80% healed with some occasional relapse (joint pain, low blood sugar, low energy) but most of the time I feel “good”

    • L August 13, 2018 at 4:45 pm Reply

      Many of us end up with pain in the pelvic area. Mine was so bad at one point I felt like I had crushed glass inside me. I strongly believe it is interstitial cystitis (at least in my case.) Should that be true for you, you might want to look into freeze dried aloe vera.

      • Andrea August 14, 2018 at 5:57 am Reply

        Hey L, how are you? good to see you back…anyway thanks for the info, I’ve checked interstitial cystitis. Very interesting. The point is that I had already some issues with my bladder before getting floxed, that’s why that doctor prescribed me the FQ as “prevention”. Anyway, How did you cured your I.C.? I was reading about Pentosan polysulfate sodium (Elmiron), something that should restore the inner surface of the bladder.

        • L August 14, 2018 at 10:10 am

          Well, when I had flare ups I got a Chinese medicine mixture and acupuncture (he does both) and it would take away the pain or pressure. Eventually it just seems to have mostly subsided on its own. The last time was a few months ago—I got the chinese mixture this time without the acupunture, and it was gone in a few days. (I can’t tell you exactly what it is because he mixes it himself each time.) I did recently buy the freeze dried aloe caps for something else though, so if it happens again I will give it a try. Luckily, the really horrible “crushed glass” pain only happened a few times early on. Now I just get the occasional pressure…but even that not much anymore. I do still though seem to have some retention. However early on in this nightmare, I was going to the bathroom 50-60 times a day, and getting up to go would keep me up at night. That is no longer true now.

    • Ray M August 14, 2018 at 12:11 am Reply

      I know how you feel Andrea. One doctor says one thing and another says something else. And getting those test done when you’re floxed is horrible. I was a shy guy, but now every urologist and nurse has seen me naked, I left my dignity at the hospital door. When I started to self catheterise I was given tamsulosin, within hours of taking it I felt really ill, I had to lie down, it gave me thumping headaches and BP issues, I stopped that quickly. Have you ever considered ISC, even once or twice a day to completely empty your bladder?

      I hope you get fixed somehow. I’m nervous to see what I’ll be like once this catheter is removed. My bladder neck incision is still really sore, it’s been almost 3 weeks, it better be worth it. I expect to pee like a horse, pain free. The prof. told me the only negative side effect will be dry ejaculations, nothing else. He said there’s no chance of incontinence, leakage or retention etc.

      • Andrea August 14, 2018 at 5:50 am Reply

        I really hope you’ll be fine Ray. I’m not going to get the surgery done. Not yet. Some way or another I’m still able to empty my bladder, not completely of course, as a matter of fact I have to go to the bathroom many times, even during the night. But, the alpha bloker helps a little in that regard. The problem with the bladder neck incision, is that, at least in my case,surgery doesn’t always solve the problem. Actually there’re many chances of realapse. Many urologist told me that, so I’ll wait. Now, of course, that doesn’t mean this will happen to you. I hope not…

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