Welcome to 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 – Why NSAIDs Suck for Floxies (and Probably Everyone Else Too)

[This site is about Fluoroquinolone Toxicity Syndrome, Floxing, cipro side-effects, levaquin side-effects, avelox side-effects, floxin side-effects, fluoroquinolone antibiotics, antibiotic side-effects, dangerous drugs, cipro danger, levaquin danger, avelox danger, cipro reaction, levaquin reaction, avelox reaction, floxin reaction, Cipro recovery, levaquin recovery, avelox recovery, floxin recovery, recovery stories, fluoroquinolone poisoning, adverse drug reaction, healing, hope, and any other keywords that are important. :) ]

Please support Floxie Hope –

Thank you!  More info about supporting this site can be found HERE

The Fluoroquinolone Toxicity Solution Ebook has helped many Floxies to recover, including Cindy and Ruth.  Affiliate link –

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6,106 thoughts on “Welcome to Floxie Hope

  1. tricia June 8, 2015 at 4:32 am Reply

    Hi everyone…
    I’m about 8 months out from being closed by levaquin….about 2 months ago I felt like my symptoms were worsening and I was having a severe reaction , as I was in excruciating pain! However, I just returned from a month long vacation overseas. While on vacation I hiked, walked for miles, all with very minimal problems. I felt 90% recovered!! I returned home 2 days ago, and I feel most of my symptoms have returned.
    Has this happened to anyone else before???

    • Jason June 8, 2015 at 7:50 am Reply

      Hi Tricia. I am currently in Mexico right now and experiencing something similar. Before I left I was having a somewhat minor relapse, possibly brought on by a combination of exercise and fluoride. The day after I arrived here my relapse all but disappeared after having it for about 3 weeks, I am 100% sure this is because there is no fluoride in the water here (which is really toxic waste hydrofluoric acid back home in the water falsely called fluoride, though fluoride is not really better). I am also not playing Tennis, however at home I was only able to play once every week due to pain in legs, vs every 2 days when all my symptoms were gone. So again this leads me to believe that because I am now NOT ingesting 7 or 8 different chemicals (including hydrofluoric acid) through my bodies largest organ every single day in the shower, my relapse is gone (I’ve now been here one week).

      Hard to say what will happen when I return home, but it seems VERY likely that at some point the combination of ingesting those chemicals again and participating in vigorous exercise like Tennis and Soccer will indeed likely re-mobilize the toxins yet once again in my body as it seems I did not purge them all out the first two times (initial poisoning and my first re-mobilization/relapse). What I will do when this happens is treat it like an initial poisoning, and supplement according and hopefully purge more of the junk out until eventually most or all of it is gone and I stop having relapses. For reference, I am about 4 months out, after a ton of supplements and about 2.5 months I was 90% symptom free which lasted about 6 weeks, then I had a 3 week relapse which is now gone for 1 week. Good luck

    • holofcb June 8, 2015 at 12:16 pm Reply

      Hi Tricia! Funny, my last year’s recovery happened after 20 days of overseas holidays. After I returned i sustained the recovery for months… Crazy crazy flox world.

      • tricia June 9, 2015 at 3:34 am Reply

        That’s great!! I hope you’re still in recovery:)

  2. tricia June 8, 2015 at 7:06 am Reply

    *floxed— sorry for the type-o

    • Jason June 8, 2015 at 9:17 am Reply

      BTW – nice vaca! Where did you go? That is great news you were able to do all that exercise and have very little or no ill effects while away.

      • tricia June 8, 2015 at 10:01 am Reply

        I went to Amman Jordan and Egypt w my daughter and her father. It was interesting! They only served bottled water there. I ate all non organic food and had soy, wheat, sugar ….took no supplements (except for ionic magnesium) and felt almost cured!! I wonder if it’s just a psychological thing….being away from home, work, responsibility made me feel better??? Its a mystery…
        Hope you’re enjoying Mexico;)

  3. Linda Livingston June 8, 2015 at 8:00 am Reply

    My “side effect of the week” (about 4 months out and it seems I get a new side effect almost every week) is hives. I wake up with big, welty, itchy hives on my torso and arms. Anyone else get hives while floxed? How long did you get them?

    • Michael Teeter June 11, 2015 at 5:38 pm Reply

      Yes and I still have them.

      • Linda Livingston June 11, 2015 at 7:51 pm Reply

        Oh no Michael! I hope mine go away. They don’t appear every morning, but most mornings lately. Then they are gone within a couple hours.

  4. Karla June 8, 2015 at 7:54 pm Reply

    Linda,

    I don’t have hives but I do get a rash on my chest and shoulders that comes and goes. It doesn’t really itch. Isn’t it amazing that new symptoms just spring up? I hope that you find a way to take care of your hives and that you feel better soon. I wonder if any essential oils could help? I used them for my bout of bronchitis a few weeks ago. It cleared up naturally.

    • Linda Livingston June 8, 2015 at 8:23 pm Reply

      well, they are very itchy, but luckily they don’t hang around long. I usually wake up with them and they are gone in a couple hours. But thanks for the reply

  5. Peter June 8, 2015 at 10:50 pm Reply

    This stuff really ages you fast. I’ve noticed a massive increase in white hairs all over my head, crows feet, and bags under my eyes that don’t go away. Never had any before this medicine. I’m eating very healthy. The healthiest in my life and there is no progress. I really don’t think this is curable.

    • SM June 9, 2015 at 8:34 am Reply

      Peter- I don’t disagree. I’m almost 2 years out from only 6 days of Cipro (first and only time I ever took it). I’ve read hundreds of recovery or recovering stories. And while there are people who will give credit to 1-2 things they did that made all the difference, the vast majority will point to time. Yes, eating well can help. Yes, supplements and massage and nutrient IVs can all help. But what those things mostly do is give your body the best chance to rebound. I’ve done acupuncture and IVs and PT and massage. I’ve tried supplements as well. I’m not sure any have made a difference. But for now, I’m doing a weekly massage (it has loosened up my leg muscles) and several supplements that I have documented shortages of (magnesium, B12, D). I’m also trying out some exercise- cycling and even a little (1/2 mile) treadmill jogging to see how my body responds. But is this curable? I don’t think so. That doesn’t mean we won’t recovery. Most do, I believe. And people like Debs and others who have been around this world for a long time will tell something similar- time helps most people. Most people recover fully or mostly.

    • Linda Livingston June 9, 2015 at 8:54 am Reply

      I think it really depends on the side effects too. My breathing problems remain, but the numbness in my fingers and some of my toes is almost completely gone and my excruciating back pain has greatly diminished in less than two months of IVs (I think the phosphatidyl choline and high dose C IVs are likely most responsible for that.) As for the bags, crows feet and gray hair, those things could also be due to stress and insomnia—so don’t lose hope that at least the bags and grey hair may reverse at some point.

    • John June 10, 2015 at 4:22 pm Reply

      Hi peter,
      I agree, most of my symptoms are similar to stuff that comes up as you age: weak knees/tendons, wrinkles, just loosing collagen in general. Maybe thats why fq toxicity is not detectable in blood tests, cells just flat out die, and they do so over time anyway no matter how healthy you keep yourself, doctors cant diagnose us with premature aging, can they? Anyway, father time always wins out, unfortunately, this drug did us no favors by speeding up that time. I relate in that ive always looked young for my age. I was 33 when floxed, and In addition to my overall health taking a hit, so has my self esteem. This site helps me put things in perspective things could be much worse and I consider myself to be lucky. Am i upset at the fact my life, my body, its natural way of just “being” has been changed by a prescription drug, of course, but life goes on. Hopefully our bodies adjust at some point. Whats helped me lately is sleep. I have 2 kids 5 and 9, sleep has always been an issue anyway. However, on those nights i can sleep 6-8 hours of nonstop interruption, I feel really good. Ive been trying for a about a month to really priortize good night rest and it seems to be helping.

      • kelhatesfq June 10, 2015 at 4:53 pm Reply

        Interesting train of thought, do FQs prematurely age you. Well, anything that attacks the body and effects it’s cells or well being is definitely going to prematurely age you. Smoking, depression, any sickness, drug addiction, stress..on and on.. I had a chat buddy a few years back told me her Mom drank herself to death after 10 years. I imagine she didn’t look too pretty in the process. Been around plenty of people including an ex that had all white gray hair nearly by the age of 20 years…God awful to see that in such a young woman you have to face such realities that some people don’t face till 50 or 60…but life was that hard I figure that I am for the first time in my life relating to what they went through.

        Getting a good night sleep may even been tough due to the pain, mental illness and restless one receives by not having purpose or a life they once did. I find that if you let your body just do it’s own thing and stop trying to force it to rest when you want it to you can achieve a good nights rest sometimes.

        I wonder if this disease is just like all the rest of the diseases. Another challenge… More mysterious than some but nothing new. If it passes in some people at least the prognosis isn’t hopeless. : )

        • Heather June 10, 2015 at 7:06 pm

          Its definitely not hopeless everyone! I can not say I am recovered but I’m so thankful to be as healed as I am. I think that moderation always helps, I don’t push my body to hard but I try to be lightly active(walking, light yoga). Also sleep is so important to heal the brain.

  6. JoAnne June 10, 2015 at 8:50 pm Reply

    After 3 weeks on Levaquin in Jan. 2013, my right Achilles ruptured and I began having tendon and muscle pain throughout my body. Later that year my hair also turned white and severe wrinkles (of someone 20 yrs older) appeared.
    I was told by 4 reputable orthopedic surgeons that I would never walk again if I didn’t have immediate surgery. My opposite knee needed a replacement and it was apparent could not withstand the required “non weight bearing” weeks.
    Found an orthopedic surgeon who agreed to treat without surgery – and to use intensive PT.
    I did this for 1 1/2 years and the Achilles is now completely healed.
    After researching what the top athletes do about tendon problems, it became apparent that collagen production can be an asset to healing.
    I researched Serovital (hgh formula designed for skin – anti- wrinkling).
    One month after starting on Serovital I had decreased all-over tendon and muscle pain and stiffness that had started several months after the Levaquin use.
    The longer Serovital was taken, the more positive the effects.
    A side benefit was that the wrinkles disappeared after 6 months.
    Has anyone had experience with using natural collagen enhancing formulas ?

    • Linda Livingston June 10, 2015 at 9:03 pm Reply

      Fantastic! I cannot report yet–too soon, but one of the IVs I have been getting is high dose vitamin C which is supposed to be very helpful for collagen rebuilding. I have also just started a collagen peptide protein powder. Actually my problems were more nerve related—pain and numbness, blurred vision and severe breathing problems not related to the lungs—likely damage to the autonomic nervous system and/or mitochondrial damage to the heart muscle. I am so glad you sought another opinion and that you found someone obviously more integrative. I am having a hard time with that here, but actually found a more integrative cardiologist, and my treatment is overseen by a naturopath. Now I am going to go look up serovital!

  7. mike June 11, 2015 at 11:18 am Reply

    I agree Fq’s age you not only in appearance but especially how you feel. Over the last three years I look like I’ve aged about 10. My body feels like it has aged about 30.

  8. Jennifer Cook June 14, 2015 at 4:32 pm Reply

    I just found this site and decided to write because I have been beating the bushes trying to get help. Maybe some of you can give me hope. I look like I have rheumatoid arthritis, my skin gets red and peels, the pain is often unbearable. My hands, feet, face, neck and legs swell. My chest hurts, my back hurts and all lower discs have collapsed in my back. My shoulders and around to my ribcage hurt and often spasm up. I am over sensitive to touch, it causes pain and the list goes on and on. There is hardly a spot on me that is not an issue. I am exhausted and feel alone in this. I am allergic to every narcotic pain med except for demerol. I cannot function on something that strong and besides that it will make me sick on my stomach and it gives me a migraine. I am also allergic to steroids. All the tendons in my hands protrude and all joints are swollen. I don’t even know where to seek help or even if there is any to be had. Has anyone out there found anything that I might pursue to obtain relief or reversal? It has been 6 months of torture so far. I live in an area where the sun is very strong and I can’t even endure being outside for very long. I grow plants for a living as well as selling my paintings and I cannot do my job right now. Does anyone know if there is any hope for me? I will grab any straw that is offered. I hope this does not offend anyone, please forgive me if it does as I mean no harm, but my prayers go out to all of you. Jenny

    • Linda Livingston June 14, 2015 at 4:47 pm Reply

      Hey Jenny, you didn’t mention what preceded all of this. Were you on Cipro or Levaquin?

    • Lisa Bloomquist June 14, 2015 at 5:48 pm Reply

      My heart aches for you, Jenny! I’m so sorry for everything that you’re going through! Take a look through the recovery stories on this site – there is a lot of good advice within them. Magnesium supplementation, especially transdermal magnesium chloride, helps most people. Mitochondrial support supplements – like CoQ10, NAC, Resveritrol, vitamin C, vitamin E, etc. help a lot of people. Alternative medicine therapies helped me a lot. IV vitamin, mineral and antioxidant (especially glutathione) therapies have helped many people. Time helps just about everyone. The body has amazing healing abilities. Find things that help you – supplements, foods/diets, doctors, therapies – and work them every day. Getting through this is a process, but you can, and will, get through it. Hang in there.

      Hugs,
      Lisa

    • Rene June 15, 2015 at 2:42 pm Reply

      Hi Jenny,
      ASAP:
      WE are all ages, sizes, and weights here. Most everybody around the Globe who has been harmed by these drug has benefited and NEEDS to get Magnesium “into the Cells”. That means you. Do not underestimate the recommendations here or what I and others suggest.

      This drug strips it out of the cells….MAGNESIUM is needed for 700 different process in the body. The entire muscle skeletal system. That means, Muscles, Tendons, Ligaments, All soft tissue,…..Also needed for the Heart which is a MUSCLE!. The NERVOUS SYSTEM, The Blood Sugar Balance, BRAIN – Serotonin….The list is very very long. You cannot get MAGNESIUM “INTO” the Cells unless you get “MAGNESIUM OIL SPRAY” and apply it to your body. This form of Magnesium is: Magnesium Chloride which is a very effective way to get magnesium “inside” the cells and fast. You can buy it online From Ancient Minerals.

      It may tingle, or sting when first applied after 5 minutes or so….that is normal. Just skin sensitivity. This will likely diminish after the first week or so of daily application. Apply anywhere from 8- to 20 sprays to your LIMBS ie. the length of the limb including wrists and ankles & Hips, lower back sacral area…..these large surface areas are best. The delicate skin of the sides of neck, may be sensitive…..that is normal normal. If it burns to the point that you are in pain then of course by all means rinse off in the shower or just get a warm wash cloth and wipe of the residue. This is easily done. It is NOT an oil….though the name suggests that it is. It is water, w/ Magnesium Chloride. Wash you hands after so your palms wont get dry. You may wish to wipe off the excess salty residue with a warm wash cloth too. Wait 30 minutes or longer for complete absorption before wiping or rinsing off.

      This is the # One thing you should start doing for yourself. And AVOID all Over the counter meds, and prescribed meds. ADVIL, IBUPROFEN, STERIODS, ARE A BIG NO NO!

      They are NOT to be used. Will exacerbate the already severe issues caused by these drugs.
      I have copied & pasted older post I wrote, pardon the repetition where you find it.
      ——————————————————————
      The first 1 year is dreadful….but do not let it convince you that you cannot recover.

      First if you do not already know, I will recommend the following:
      These are not arbitrary considerations. These are directly to help address the long list of systemic issues that reveal themselves over the first & 2nd year of this injury. Eliminate toxic sources….add nutrient based risk free supplementation to facilitate healing. A long long worth while road to restoration and healing. “Systemic Musco-skeletal injuries” and Peripheral neuropathies…..Neurological issues are the bulk of what you will be wading through. Pharmaceutical drugs will not aid you….high risk or increased complications and pain.

      #1 ASAP: MAGNESIUM – your friend for years to come

      ORAL Magnesium – Magnesium Citrate – do not take Glyciante – or other forms. 400 mg daily. Natural Calm is an excellent brand. It is Ionic form. Amazon on line or Vitamin Shoppe, or IHERB are great resources for purchasing supplements.

      Regarding Magnesium “GLYCINATE”:——————————————————————

      The glycinate form has the risk of being issue for those with Neurological issues such as anxiety, sleeplessness, jumpy thoughts, tired but wired, lack of calm……being that glycinate can be a factor for the balance in the brain between GABA & GLUTMATE. You do not want to increase “glutamate”…..Glycinate is a risk in contributing glutamate. In fact it is a form of “glutamate”and therefore stimulation in excess is not how we are designed to live regardless of the FDA’s approval of artificial sweeteners, aspartame, and “natural flavors”…MSG….Hydrolysed yeast and protein, or yeast….ALL which ramp up glutamate in the brain….over stimulation causing neurons to over fire….burn out, and die. FDA and the food Corporations at there finest.

      Fluoroquinolones disrupt this balance quite markedly for many…by interfering with the Gaba receptors….. which are calming neurotransmitters…..hence without that clear signalling you have “glutamate” stimulating and no Gabba to put on the breaks. Gabba supplementation is helpful but not without eliminating the contributions of glutamate that are artificial additives in the diet. Veg caps are important as they are Not made form Gelatin another glutamate exposure.

      The science is complex and therefore to cut to the chase: Glycinate is not bad, it is a only a worthy consideration for those individuals who are either ADD ADHD or Flouroquinolone poisoned…..eliminating excess contributions of those substances that cause unbalance between GABA & Glutamate. We are already exposed to excess glutamate in the various food & beverages, protein powders, sports products,…etc. manufactured packaged foods allowed by the FDA and produced by the food conglomerates. The system created illness, we did not suffer with generations ago like we do today.
      ————————————————————————————————

      #2 Trans Dermal Magnesium OIL…spray .-after 20 min.wipe off excess lightly with wash cloth. keeps skin from drying out. Very helpful. I bought on line from “Ancient Minerals”.

      The spray – sprayed into palm and applied to hips, legs arms as needed. You do not need to use more than 8- 20 sprays….in fact best to start conservatively. Just 8 sprays….or 4 sprays 2x’s per day……. It may sting some….ok….but if burns, then jut rinse off or wipe off with Wash cloth. Dilute by 1/2 and apply as you did before. ** Intracellular needs are only met by this form of magnesium and trans dermal through the skin. Oral supplementation cannot achieve the levels needed intracellular. You will likely experience 3 days of substantial relief….. However…count the number of sprays you have used so you can easily calibrate dosage. Decrease dosage or frequency becuase once you are saturated more is not better. Calibrate according to your own individual needs.

      3) Epsom Salt Baths – Magnesium can be absorbed into the cells far better than just oral Magnesium. Helps alleviate the pain to various degrees. Do not underestimate the benefit. Cipro interferes in the intracellular magnesium so this is why these baths are profoundly important. Do NOT buy, Epsom Salt w/any Aspartate, or anything that says anything but Magnesium Sulfate. Aspartate is an excito-toxin to the brain.

      Get some Epsom Salt and soak in that often. Be sure when you purchase it: must only be Magnesium Sulfate! Nothing else….no aspartic acid or anything….Aspartic acid is garbage and will not help you, could harm you, making you feel worse. You will be doing this for the next few months, taking epsom Salt baths.

      A comprehensive approach really has served all of us who have made progress, in that one with out the other would not be sufficient.

      DO NOT TAKE ADVIL or other NON – Steroidal DRUGS –Also -DO NOT TAKE STEROIDS !! Will make thinks worse, compromising Tendons, ligaments further. Dangerous! The risk of tears or ruptures is real.

      A) I had all my Hormones levels checked: Estrogen, Progesterone, Testosterone, Thyroid T3 T4, DHEAS, Pregnenolone. I was low in everything. Supplementation was only with bio-incidentals. NO synthetic pharmaceuticals. These supports were deployed by trans-dermal cream or tablet. Hormones have a huge say in many processes in the immune system and Brain and everything else…The idea is how to treat yourself holistically. Whole body..not symptoms. Symptoms indicate issues with systems. Endocrine effects all the other systems.

      B) Vitamin D levels..Crucial! Vitamin( D3) supplementation is profound if your levels are low.
      Mine were low. I take 10,000 IU daily from Thorne Research (excellent quality brand) and just one small Vegetarian capsule! Vitamin D3 is a hormone…very profound need by all. The United States is deficient. The minimum to address deficiencies is 2000 -5000 IU…..

      C) Vitamin C IV Drips! This will help the cells with anti-oxidants which is needed for such a great burden of Oxidative stress on the body/hence the pain. Cannot be achieved by oral Vitamin C, (1.5 hours or longer for an IV but well worth it, no joke) Your Cells will love it. Naturopath’s who do IV therapies provide this form of therapeutic care.

      D) Take ZINC Picolinate – USA everybody is deficient.

      E) Avoid MSG, Natural Flavors, Hydrolyzed or Autolyzed anything! Do Not use artificial sweeteners!! they are very toxic to the brain. Nothing with Glutamate..makes pain worse. No to chewing gum, and fluoride toothpaste.

      F) Consider to purchase from LIFEWAVE on line the ” Y-AGE Glutathione Patch”.

      Helped me tremendously, with fatigue, some kinds of pain, brain alertness, and sense of well being! This is non-trans dermal patch worn on meridian points. Nano- technology raises the glutathione levels within the body. The most powerful necessary anti-oxidant and detoxification that the body utilizes to handle the burden of chemicals/ drugs and i our environment. The body will make more of it’s own. Nothing goes into the body. Instructions will come with it where to place it on your leg or foot or abdomen. They ship all over the world. The guy behind it came out of Nassau. Will be worth you purchasing for approx: $80 US dollars for 30 day supply.

      If you become a member the price drops. (You do not have to buy monthly) You can rotate patches. Take off at bedtime or may not fall asleep. The fatigue is because of the high Oxidative stress happening..counter by doing the mentioned above.

      Also, Naturopaths that do IV Therapies such as “Vitamin C” often also offer “glutathione” as a push. This is an intravenous 15 minute push. Not painful, very safe and can really help with the neuropathy and pain in your feet or elsewhere.

      The Y-age Glutathione patch is the more economical way……and it works by increasing your own glutathione levels. However trying a glutathione push one time maybe worth your while too. It may give you insight as to how adding antioxidants such as Vitamin C & Glutathione are so very valuable.

      G) AVOID: packaged food -with preservatives, & chemicals. The burden on our detoxification pathway has been altered making us very sensitive to the exposure of the junk in manufactured, processed food…If God made it, it’s ok. Man made likely garbage.

      H) Drink water through out the day!!!! Everyday.you don’t have to guzzle, but drink through out the day.Hydration very important.

      ANXIETY /SLEEP PROBLEMS /
      OVERLY SENSITIVE to SOUNDS / Twitching…TIRED & WIRED
      —————————————————————————————–

      L-Glutamine is very helpful to rebuild the gut lining… however it is extremely deleterious when supplemented for those with Glutamate issues. Same thing with Whey…which can really be an issue for those with glutamate issues. Glutamic Acid found in many vitain formulas ca also be problematic. ….. I am one of those individuals. I do have, Gaba / glutamate & folate issues, methylation issues. Because of this possibility for others it is best to proceed conservatively with the bio-chemicals that tend to be with the least potential issues.

      H) L-Theanine…it can help balance some of the anxiety you are experiencing from lack of Gabba…leaving you with too much Glutamate unopposed. Cipro effects the Gabba receptors in the Brain. 200 mg am – 200mg pm not more than that. I use at bed time as needed.Purchase L- Theanine Brand that only L-Theanine and nothing else.some brands add Calcium. NO supplemental Calcium should be used.

      Do NOT take any “supplemental” CALCIUM ..this will make things worse regarding Brain Health – for those of us with Anxiety, feeling tired and wired, lack of calm in our thinking and mood. Wired & tired & pain issues. This also applies to autistic children. What we share in common is an issue with balance between Glutamate & Gabba in the Brain. Will WORSEN NERVE PAIN.

      ALSO he need to AVOID !: MSG, Hydrolysed or Autolysed Yeast, Natural Flavors..And high glutamate foods like BEETS, Legumes, which will “ramp up” the Glutamate in the Brain without Gabba to oppose it and keep things in check/balance. Stimulating/Calming balance between the two.

      K) OMEGA 3 – Fatty Acids. BRAIN – inflammation – “Nordic Naturals” – makes excellent quality brand. Vitamin Shoppe, Amazon, IHERB can buy from.

      This is also a CNS – Central Nervous System – injury. 3000 mg daily = 2 caps 2x day. I take a total of 5 per day.

      L) Phosphatidylserine Serine –
      Helpful for the cell membrane to keep it fluid, and able to absorb and detox waste

      M) Ubiquinol – The active form of “COQ10″ for “energy production of the cell”, supportive for the mitochondria.

      Just to clarify, everything that I wrote to you is not arbitrary or general….the forms which each supplement are in, is for a reason. ORGANIC FOOD as much as possible!!! I also want you to know that what you have described is not unique to you….You are not a freak, or weird, shocking as it seems there are thousands upon thousands who have been injured by this class of drugs.

      Fluoroquinolones are “chemotherapeutic drugs” being used as antibiotics. This information is easy to find but with held from the medical community as a whole with the full knowledge of the FDA and the pharmaceutical companies. It is a complete disgrace that this has continued for 20 years!! Knowingly profiting off from maiming the public.

      I encourage you to feed your ears, eyes, and thoughts with all things that are of love, joy, laughter, and worth your precious life. Skip the ugly, television programming that offers little to inspire or uphold that life is worth anything at all. You need all that can support you and provide nourishment for your spirit and healing form these injuries. We are designed to heal, and the medical establishment seems to believe otherwise….and so they base their decisions on suppression of symptoms….with their drugs….which create illness.

      God Bless

      • Jason June 15, 2015 at 9:57 pm Reply

        Its a great post overall as I’ve said before, but I do hope you will add to it that people need to drink lots of UN-FLUORIDATED water. This is absolutely critical in my opinion, everyone here has been fluoride poisoned, and people who do not lower their fluoride burden risk: getting worse, their recovery taking much longer or potentially never recovering.

        Fluoride/Fluorine is one of the most toxic substances on Earth, right up there with arsenic and is in the drug everyone took, it is also one of the most reactive substances on Earth and no one truly knows how much this screws up the internals of a Human Being, though more and more evidence is piling up. When I see people here having relapses that are WORSE than their initial Floxing, which unfortunately happens too often, well to me it logically points to exactly one substance, one that gets stored in the body where other toxins are hiding (of which most people have many), interacts with them and then eventually all get re-mobilized (things like exercise, saunas, aggressive deep tissue massage etc are known to potentially mobilize fluoride) only now its a worse toxic sludge since its not only fluorine and the rest of the drug, you can have mercury, aluminum, cadmium and many other things now attached to it.

        Educate yourself on Fluoride and the many sources and hidden sources (like table salt and many other weird places) find out if your water supply at home has it (95% of USA & Canada do) and do your best to avoid it like the plague to help yourself heal. People that want to get even more serious and aggressive should also educate themselves how to purge it out of the body, I did this and am convinced that I got rid of a good amount of Fluoride and the damaging drug attached to it, I did not get it all as the relapse I had would likely point to, but the fact it was a minor relapse again to me points to less toxic load in body than then I was originally floxed.

        I have also noted at the top of this page that my relapse completely disappeared when I left Canada, and I am still not back there and relapse is still gone, coincidence that the water I am showering in where I am now has no Fluoride? Coincidence that Tricia also had all her symptoms all but disappear when she went away for one month to a country that does not add fluoride to water and after being home for only 2 days had most her symptoms return? I think not folks

        • Linda Livingston June 16, 2015 at 8:36 am

          I totally agree with Jason too about the fluoride. POISON with or without cipro…but it is apparently what makes it such a dangerous neurotoxin, and helps it bind to whatever it latches onto in the body. I have shared my story on one or two anti-fluoride sites.

        • Rene June 16, 2015 at 11:58 am

          Hi Jason,
          Thank you for the suggestions to include the Fluoride aspect. There are indeed so many details to remember that can have a meaningful impact over the long long course of time.

          The attempt to post as much helpful formation as quickly as possible to someone who is new is quite a feat. Again, I admire your spirit or perseverance in spite of the challenges. Everyone is persevering as best they can. Your research skills has been a great blessing, and I do identify with that in that I also looked high and low since 1996 when I went for several years in declining health due to Lyme……and than had resumed a relatively normal functioning life……til Cipro than a new paradigm ensued. Much of my prior research had been a source or a foundation that I could build upon and apply to my understanding of how illness & chronic issues ensue and can be reversed. Rubik’s Cube keep turning til you get stuff to line up better.

        • Linda Livingston June 16, 2015 at 12:06 pm

          Rene- a good half of the patients that go to see the two naturopaths I go to for Cipro toxicty have Lyme—and I hear their very similar stories of having gone from doctor to doctor with no help. Luckily there are more and more doctors now aware of how prevalent Lyme is—and I have heard of a couple who “specialize” in it now. (They are also more integrative physicians.) One afternoon this young woman was telling me about how she saw a neurologist for a year and kept saying she was sure it was Lyme and he kept wanting to treat her for other things. She finally left in tears. Low and behold, it was the same one who said in my visit report that I was “delusional” for saying all the side effects were from Cipro! Ack. Someone—please take away his license.

        • Rene June 16, 2015 at 4:16 pm

          Yes Linda….there is plenty of that nonsense to go around for all. Several years of wading through the integrative world of medicine as well…..I had doctors want to “hug” me as if that is some kind of game plan for treatment. offering pych meds, in that if I could trick my brain into an artificial non depressed state that would take care of all. No matter what I said or my demeanor it was consistently ridiculous and potentially dangerous should I have followed their direction.

          I praise God every day for the discernment he has given me.

        • Rene June 16, 2015 at 4:40 pm

          Linda FYI: Lyme Literate specialist doctors are frequently as dreadful as the rest of the MD’s as far as the approach. I did an about face entirely, after having dabbled into the premise that after 4-5 years of undiagnosed Lyme that somehow these daily antibiotics would salvage my health at the late stage of my illness. The experience led me to jump ship…..based on what I went through taking daily antibiotics for days n days, week n weeks on end. Horrific. It a completely flawed premise, and dangerous beyond measure.

        • Linda Livingston June 16, 2015 at 5:25 pm

          well I imagine that is why I am seeing so many Lyme patients at the naturopath’s

      • Gina June 17, 2015 at 1:49 pm Reply

        Rene,
        Great info you posted! What do you take for your MTHFR issues? I also have MTHFR issues. But am overwhelmed what to do!! Any advice you could give me would be greatly appreciated!! Thanks so much!!!

  9. SM June 15, 2015 at 1:39 pm Reply

    Being around the flox boards is an interesting experience. You see some of the same people on there. And you see quite a few new names pop up from time to time. But there are also many people who just aren’t there anymore. Many have theorized that this is because those people have recovered and moved on. That’s a very optimistic take I’d say.
    I tend to be a pessimist. And one of the things that gets me about this illness is how it has far surpassed even my pessimistic expectations. At about 3-4 months in I read the Flox Report cover to cover. It was sobering. But I knew at that time that I wasn’t a “severe” case and that I’d be looking at 18-30 months until I would make a good, maybe even full, recovery. Now, the Flox Report is filled will problems, mostly in the weight that so many of us give those recovery timelines and categories of severity. And I now realize the error in my ways.
    But at 24 months out I can honestly say that my improvement has been minimal at best. My significant foot pain has persisted for 24 months. There was improvement during the first 6 months, but I feel it’s been relatively stagnant since.
    It wasn’t supposed to be this way, to go like this. We are supposed to bounce back. So many recovery stories I have collected involve people recovering between 18-36 months. I looked at this time as a time of recovery, a time when I’d know I was turning the corner. But so far, it hasn’t been that way.
    “How much longer do I do this?” I often ask myself. I don’t know the answer. But I do not intend on being a 5+ year floxie, still suffering, still living every day in pain. Life just hasn’t been fun for the past 2 years. It isn’t worth it to me. Not an hour goes by that this doesn’t consume my thoughts. And one of the reasons I’ve kept going is because of the hope of recovery. But as time moves on and little changes, that hope diminishes. And without that, why keep going? Two years is too early to make those choices. That’s what I think. But maybe 3 years isn’t. Regardless, the choice is in the hands of the person in pain, the person who has to deal with a daily existence void of true peace and happiness. I hope that I don’t have to make that choice. I hope my recovery is right around the corner. My floxing started about the same time this website did. I’ve read every story multiple times and will will never understand why the FB group can have 3000 members but there are only a limited number of recovery stories on here. And let’s be honest, many of those are really “I’m getting better” stories because the people are far from recovered. I’m still hopeful that my story will appear up on this site someday. I’m holding on to that hope. It’s all I have.

    • Linda Livingston June 15, 2015 at 2:08 pm Reply

      SM…I can certainly understand your despair, but let me share with you how far I have come in just months.

      At the risk of boring everyone with my side effects again, I will try to summarize: head to toe nerve damage including blurred vision and a terrifying “light show”; hyperosmia (exaggerated sense of smell that made me a shut-in–everything from hand lotion to flowers to foods cooking asphyxiated me (this was a deal breaker for me had it gone on); ravaged GI system with 30lb weight loss; excruciating mid-back pain (worse than when I had cracked ribs); numb fingers and toes and “out of control jerking pinky finger”; bladder pressure; insomnia (most nights 1-2 hours WITH a sleeping pill) knee pain, pericardial effusion (fluid around the heart) and severe depression. The absolute worst was horrific breathing problems–not lung related–a combination of nerve damage and perhaps mitochondrial damage to the heart muscle. At the worst, I was bedridden, then I could only “shuffle” across the room, bent over. There were entire days when I felt like I was being choked and suffocating. I prayed I would die in my sleep every night for a couple months. It was absolutely nonstop torture. I could not do anything but sit all day, and be driven to appointments. After a dozen not-helpful MDs I bit the bullet and went to a naturopath, where I have been getting IVs for phosphytidalchoine, H2O2, High dose vitamin C, glutathione, and Myer’s cocktail.

      In just two months, the numbness in my fingers is gone as is the out of control finger. The numbness in my toes is about 1/2 of what it was. The excruciating constant back pain is now only once and a while, and no where near as painful. I have gained back ten pounds, the hyperosmia is only there faintly, and the breathing, though still not right is immeasurably better.

      These treatments are expensive, and I am out of work, but I have borrowed to get them, because if I couldn’t be better, like you, I wouldn’t want to be here. I am even driving myself now short distances. From where I was just two months ago to where I am now is astounding. Please, don’t give up hope, and try something you haven’t yet tried. (PS Also remember, the Flox Report is just one patient’s estimation.)

      • SM June 15, 2015 at 9:38 pm Reply

        Linda- Glad to hear you’re making some progress. I certainly haven’t given up yet. I have tried lots of things- PT, acupuncture, IVs, massage, and supplements such as B12, D, and magnesium (all ongoing). I just haven’t seen anything that makes a difference. And sometimes I get a few good days but then bad days inevitably follow. It’s just so frustrating. And it’s hard to stay positive when nothing works and it’s been two years.
        Thanks for the positive words.

        • Linda Livingston June 16, 2015 at 8:41 am

          It is the most frustrating thing in the world, especially when it seems to be “one step forward, two steps back.” I can’t tell you how many nights I prayed I just wouldn’t wake up, especially when the breathing became suffocating. Just wondering if among the IV treatments –did you do Phosphatidylcholine? It very specifically targets nerves, and so much of this is nerve damage. I have read you need 10-20 IVs (and I always get a push of glutathione) The high dose vitaman C helps restore collagen (and I get glutathione push with that too.) These things take time. And as Jason pointed out, avoid fluoride like the plague. Even bottled spring water has some naturally occuring fluoride, but no tap water, unless you are lucky enough to live in a rare city that has banned fluoride in water.

      • Jason June 15, 2015 at 10:51 pm Reply

        Great news indeed Linda that you have found multiple things that are helping. I’ve said it before and will continue too that Floxed Human bodies are NOT going to be helped by just trying one or two things at a time. Many of the success stories you see and including people just relating their stories in these pages, people were taking multiple things like 10+ (simultaneously too, not consecutively), coincidence? Its really not to me, when you look at the facts of exactly what this drug does to the body, its completely absurd to think that just a couple of things would help, this is a serious and complicated poisoning that everyone who has done research agrees on, just look at Rene’s post above and you begin to see some of the many ways this poison screws up the body, Rene has done the research, people should pay close attention to Rene’s posts. There is a good reason there are so many things recommended in that post, and I can tell you that there are MANY more that should be included there too, if someone is serious about preventing and fixing the damage that this drug does.

        Having said that, I can also completely understand where you are coming from SM, being someone that has suffered not 2 years but THIRTY years. I’ve said it before that at times I too feel I am at the end of my rope, so I know exactly where you are coming from, I have seen 40 plus doctors and specialists over the years, Natural paths, tried hundreds of supplements, diets, thousands of dollars, and yet my condition (debilitating brain fog) persists and continues to ruin my life and have me feeling quite literally like the walking dead. My family thinks its all in my head, thanks for the support…

        Low and behold, it looks like after 30 years I MAY of had a breakthrough, the doctors in Canada are near useless but I am now in Mexico, where you can see a Neurologist THE SAME DAY you go to their office. I went to one here, and then later went to a GP and both of them suggested the SAME damn things that Doctors at home have never tested. I just got back some blood work tonight that looks (more tests are needed) to confirm their suspicions, so my hope meter is actually registering again after feeling like giving up for the last 6 months, of which floxing just made things much worse. (I am quite sure the drug induces hopelessness, I know I suffered from it even more than my usual and its just one more symptom that has to be dealt with)

        Anyway point is as Linda and others have said, there is always hope, and unfortunately people need to fight for it, and for themselves, literally, even though you feel like you can’t. Its one very *$(&(&#ing evil drug that beats you down yet demands you fight, debilitates you yet demands you exercise to help yourself get better. Do some people recover by doing nothing? Sure, but I would bet my savings many more people recover by being proactive, trying many things out until they find something that works etc and I would also bet these people recover much much faster (Many examples of this have been shown here at FH actually in the last 3 or 4 pages alone). There are I believe many common things that will help most Floxies, and these are well documented already on these pages and in stories and get brought up time and time again. Then there are things that are not so common, this is where experimentation is needed, everyone has their little differences, different thresholds, toxin levels, dna differences, etc. You have to find what works for you, and you have to research and cater your supplement plan according to the specific ailments you are suffering from.

        In your case SM, you have PN, yet you have not tried to supplement specifically for this nerve damage, even after I did some research for you and pointed to websites where other people are suffering from the same condition and supplementing with the KNOWN things to help PN, and learning from each other in the process. How can you expect to get better if you are low in Vitamin C and take Lithium? If your car has a dead battery and you change the starter do you think that will help? I feel for you I really do (why I did some research on PN, something I don’t have myself), I read back in these pages quite a ways and seen the desperation in your posts even 6 months back, I truly hope you will consider what I am saying here and act on it, it seems your well being depends on it and please keep just a bit of hope in reserve as hard as I know that truly is (and I really do believe me), even if nothing else works we know that for many people time eventually will.

        • Debs June 16, 2015 at 3:09 am

          And on the other hand, & with respect to all here, I personally feel I have improved no differently myself each time I have been floxed, than someone who chooses to follow strict dietary / supplementary protocols. I have done nothing at all myself, apart from cleaning up my diet

          The first time, & I was seriously floxed, I actually did not have a clue what had happened to me. & so I changed nothing at all. Even so, I still eventually got to a place where I felt completely recovered from that floxing. Another time, I eventually reached a point where I felt 80% recovered. We must always try to keep in mind that each persons floxing is completely unique to them in EVERY respect & when it comes to potential treatments, whatever this might be, what can really help one person, can in fact sometimes seriously hurt another.

          My epsom bath experience obviously being just one example of this.

          My personal opinion, based on my own & experience of watching others go through this after being in this world more than a little while is, that although of course dietary / supplementary protocols can certainly help, & some may indeed be VERY helpful , we need to be very careful when instigating them, & imo the biggest thing which will eventually show just how damaged they are, & how much they will improve / potentially recover, & the biggest improvement in a persons symptoms will eventually be seen over TIME.

        • SM June 16, 2015 at 10:00 am

          Jason- I appreciate your feedback. I’d like to clarify a few points however. Let’s be clear about a few things: I’ve suffered for 2 years. You’ve been a floxie for, what, 6 months? (Sorry, I’m actually unsure how long). My point? I think you’re relatively new to the world of floxies. Also, you don’t know what I’ve done and not done (which you claim to in your post). Please don’t presume to know. I have not listed all of my attempts over the past 2 years. Thirdly, while I appreciate your help in researching for me, it isn’t research I haven’t done myself. I know the protocols for PN. It’s not rocket science. Again, I’ve been dealing for 2 years. I’m educated. Again, if floxing was as simple as ALA and vitamin C and magnesium baths, we would all be recovered!

          So while I appreciate the research you’ve done and shared, I’m also not in awe of it. One, the protocols for PN are common knowledge. I know them. I’ve tried most. Second, I feel that the tone of some floxies is of knowing all in a place where we know very little. Claiming that Epsom salt baths or avoiding fluoride are the keys to healing is absurd (in my opinion). How do I know? One, I’ve done them both- for 2 freaking years! And another, there are thousands of floxies on the FB group who’ve also done them and not been impacted.

          For SOME people, taking vitamin C or D or B12 or magnesium can make a difference. It can. But I would argue that for many people, their bodies heal slowly and partially over time. And, they often cannot point to a specific cure. I have hundreds of stories of recovery that my wife has collected off of various web pages. And while most people attempted various remedies, there’s no pattern of healing protocols that work even most of the time. Now I’m not suggesting we do nothing and just wait. I have not. But taking 17 supplements is not necessarily the answer either.

          And for the record, I’ve had a rather extensive blood test done that examined levels of minerals and antioxidants in my white blood cells done. What was I not deficient in? Vitamin C. ALA, COQ10. All the V vitamins except B12. Glutathione. All normal. I was, however, deficient in magnesium and B12 and D. I have been supplementing all of them for months now. I take oral mag. I drink pico-sized mag. I use magnesium oil. I take magnesium baths. I do. All those things because I know I have a deficiency.

          So thanks for the advice. I don’t believe that my well-being depends on me acting on your guidance. You’re not an expert on my floxing and my experience. Advice is always welcome. Advice with judgment is not. I can go to the doctor and get that.

        • Linda Livingston June 16, 2015 at 10:36 am

          Not at all surprised about the magnesium deficiency. In fact, when I was first floxed and desperately searching for answers, I had read that Dr Flockhart, from U of Indiana med school (one of the first I believe who treated people with FLQ toxicity) recommended milk of magnesia in small doses every morning and evening. I was ready to try anything, so I did that—but as you can well imagine, this is not sustainable. FLQs leech the magnesium out of you, as I am sure you know–which is why the drug manufacturers tell you to take the cpro or whatever at different times than mag, since they compete. (Damn, wish I hadn’t followed that instruction.) One of the first IVs I got though had way more magnesium than you could ever orally consume, which I think is helpful.

          I have had some discussions with Jason and I don’t think he was trying in any way to suggest that you had not done your own homework. I do understand what you are saying though—I had a similar reaction to someone else’s post that sounded like it was THE only way, and seemed very adamant that you follow it to the letter. We are all different and have had different reactions. I have had almost none of tendon/muscle problems, but have had severe nerve damage to the heart, eyes and nose. Obviously my treatment will be more geared toward that. And on that note, I want to reiterate what Lisa posted—these are and should be suggestions only. We are not physicians (as far as I know) –and hey, I haven’t had any luck with them anyway! I was glad to find a naturopath who knows far more than I do about how the body/nutrients work, and has taken the pressure off of me to be constantly trolling the internet trying to find “cures.” So, everyone, suggest away–but remember we are all different.

        • Jason June 16, 2015 at 10:52 pm

          Linda thank you for interpreting my intentions correctly. SM, I’m sorry you did not, I guess the post did come on a little strong as I felt the obvious desperation in your posts warranted it (again I am referring to your posts for at least the last 6 months which all have a very very similar tone, and all refer to trying the same things in the same way with virtually no results). Yes I read back a long ways in these pages at FH as a very small part of my entire massive specific research project on Floxing, and yes your posts actually stood out enough that I remembered them as again I truly sympathize with you going through my own much much longer course of desperation, which is why I have tried to reach out to you as I have been researching the Human body and ailments for more years than many Doctors.

          SM there are actually a few issues, misinterpretations and a lot of very obvious and concise points from my posts and others posts missed in your reply, but it seems quite evident that you ‘mostly’ have your mind made up about Floxing and especially your Floxing (as much as I hoped I could break that down a little to try and help its just not) so indubitably at this point there is not much point in continuing this discussion or me trying to help you any further.

          Just one more thing, I have never claimed to be an expert and have stated the contrary many times (yes there are a few people around who have done “massive amounts” of research that might unintentionally sound that way when sharing info, I think in almost every case I have seen its unintentional anyway and if I have come across this way I assure you its also unintentional I]m just sharing to try and help), never said avoiding Fluoride would cure anyone (far from it, this is just one of the misinterpretations in reply as I have stated numerous times including in that very post healing is a multi-pronged approach) and as far as your well-being I just hoped you would “consider” some of the general basic points made like to keep trying things and especially specific things until you hopefully find something that works, since you have very blunted stated many times that you simply can’t keep living with your symptoms. Anyway best of luck to you on your journey, hopefully something(s) you try or as I said eventually time will heal you, and hopefully sooner rather than later for you.

        • SM June 17, 2015 at 12:28 am

          Jason-
          I appreciate you responding to me. I do have some desperation in my posts and you’ve picked up on that correctly. It’s a forum for me and many people to express themselves. And sometimes I just want to say what I’m feeling.

          I want you to know that I have not and will not, anytime in the near future, give up trying things to recover. And I thank you for caring enough to respond to my message. I’ll also add that it is my personal opinion that my actions play very little role in my own recovery. That may sound contradictory, and I guess it is. But based on tons of reading of people’s stories from this site, the Facebook group, and even other groups, I really think time is the only consistent healer. Magnesium and other supplements are vastly over-rated, again in my opinion. Most people who recover do so without significant or consistent supplement use. That said, I’m taking supplements because, like you, I’m trying to give myself every chance. And who knows, maybe that 8th nutrient IV I’m doing tomorrow WILL make a difference. I doubt it, but I have little to lose but money and I’m way beyond caring about that. I have tried lots of things throughout my two years. I was relatively conservative for the first 18 months, but that has changed during the past six. Conservative didn’t work. I waited and nothing happened.

          As far as you helping me, I appreciate your effort and attempts, I really do. But it isn’t necessary. I know plenty about what works and what doesn’t for floxing and PN. While I haven’t done the research some have done, I truly believe I have read more personal floxing stories than almost anyone. So I do have knowledge about what has and has not been effective for some people. And, to be fair, I don’t recall ever asking for help. Maybe I’m wrong- you like to say how you refer back to the 6 pages of posts in this section, but being on a phone I find that very awkward and never do so. Regardless, I have expressed a feeling of hopelessness and despair that I feel. You’ve noticed that and are correct. I appreciate you reaching out to me, even if your tone was a little strong and judgemental in my opinion. I do know that you’re just trying to help. And because of that I’m sorry I jumped at you in my response.

          And a little advice, not that you’re seeking it- when you say things like I missed some “obvious and concise” comments that you’ve made, it can come across as condescending. If you’re aiming for that, great. But if you’re trying to help people, you might want to improve your bedside manner.

          I wish you the best of luck in your healing. Despite our apparent rift, I’d like nothing more than to see your name, the names of all others who post on here, and mine up in that “Recovery Stories” section in the near future. And by near future I mean freaking soon. We’ve all dealt with this crap long enough.

        • kelhatesfq June 17, 2015 at 4:04 pm

          You may be 100% right but be cautious prescribing advice. Each patient is an individual with a set of issues and health problems. Speaking of which Doctors generalize us and throw at us gallon of supposed Scientific Prescribed Treatment. Eventually the very things you wrote about may be a medical prescription but nobody know’s what this disease is for certain. i.e. People swear by IV Vitamins, meanwhile there is conflicting evidence your body forgets how to produce it’s own levels of certain types of vitamins

        • SM June 17, 2015 at 4:47 pm

          kelhatesfq- I agree, which is why I generally don’t prescribe advice. Instead I state what I have tried. And I have my opinions- but those relate to my own body and how it responds.

          Thanks for the information on IVs- never knew that. Just adds to the fun!

        • Jason June 17, 2015 at 7:43 pm

          SM – I am very happy to hear you say you are going to keep trying, I really believe you will recover and that the right combination of things can really help do that faster but if not found, I still believe time will heal you. Obviously this is just in my unprofessional opinion but none the less, FWIW.

          Also guys point taken on being a little more careful on general advice, again I usually always always veer very much to the cautious side, but in SM’s case I was truly just very concerned (I apologize for tone it just seemed past posts had no impact) and I just hoped to somehow get a message of hope through, so hearing you say you will keep fighting really makes me happy for you.

          I am very lucky in my own Floxing, knowing the Human Body as I do I took an extremely aggressive approach day 1 without Avelox and 10 weeks later I was 85% symptom free from the crappy 25 or so issues I had from this stupid drug, and at just 12 weeks I was 90% better. Given my age and mostly not great state of health pre-floxing (unlike most who are often young and in great health) which included joint and tendon issues for a few years, crazy brain fog and many many others I won’t bore anyone with, I was truly terrified this drug was going to completely destroy any chances of playing sports ever again let alone live in some kind of normalcy. For me the moment I learned about what this drug was capable of the “aggressive approach” was not a choice but a complete necessity and I know without any shadow of a doubt what I did worked (22 of 25 symptoms gone in 12 weeks, and many of them in just 2 weeks), so just really really lucky I had enough knowledge to prevent any big damage and knew how to rid my body of most of the toxins as quickly as possible.

          Never give up guys there is truly always hope as hard as it is to see it at times!

  10. Anonymous June 16, 2015 at 12:11 pm Reply

    As someone who has suffered the adverse effects to fluorquinalones- more specifically Cipro, (leaving me totally wheelchair bound for 2 years, pain, brain fog, and yes I still have poor balance and numbness in one leg). I also have cystic fibrosis. Now, levofloxicin is the only oral antibiotic my chronic pseudomonas infection is sensitive to. I still choose to take it because I don’t fancy being hospitalised every few weeks for IV antibiotics. Levo doesn’t affect me as much as cipro did, but it does still give me a temporary worsening of symptoms. I’ve also had it IV with it being one of 3 antibiotics sensitive to the bugs I was growing with double pneumonia. I would have died if I hadn’t agreed to have the combination of all 3 drugs intravenously pumped into me.

    Drug reactions could happen with any drug- it’s a foreign chemical and there’s no telling how your body will react (trust me- my allergy list has 10 drugs on it) and I would take cipro again at the drop of a hat if it saved my life. My best friend is deaf from aminoglycosides but she has never once told anyone not to take it. You are scaremongering and it’s unnecessary. People like me with CF have no choice with the antibiotics we can take & people like you telling us not to take something and even the twitter bots telling parents of young kids with CF to not allow the Drs to prescribe it (who are all well trained and work closely with pharmacists and microbiologists) Is absolutely ridiculous.

    This reaction is unbelievably rare and whilst I wouldn’t wish this side effect on anyone, I would never suggest someone not take a drug their Dr had prescribed. Potentially, people could die because of your scaremongering. I still live with the side effects but just have had to adapt and get on with life the best I can whilst dealing with awful lungs (which I can assure you would be 10x worse if I didn’t still take Levo). Life doesn’t stop just because someone has had a peculiar reaction.

    Please just think about what you’re doing. I understand why you would want to raise awareness, but what you’re doing is dangerous and such a waste of time and energy if you still have ongoing symptoms from your reaction. It’s a matter of perspective.

    Sorry. Just my thoughts on the matter.

    • Linda Livingston June 16, 2015 at 12:22 pm Reply

      Anon—I am sorry for all your troubles. These FLQ are MEANT for life-threatening illnesses, not for simple infections. And the big difference is that while it’s true that all drugs have possible side effects, they do not all have the potential to cause PERMANENT injury. It is not scare-mongering but rather ringing the alarm bell that you should always take a safer alternative. I just went through two very hellish months of breathing problems caused by nerve damage. (This among a dozen other hellish side effects.) I quite literally felt like I was suffocating, all day and all night. I have blurred vision, numbness, pain, and experience hyperosmia where all scents were asphyxiating to me, making me a virtual shut in. Why? Because I was given Cipro for a simple urinary tract infection.

      And side effects are not that rare. That is what the drug industry would like you to believe. There have been thousands (more likely tens of thousands) that have suffered horrific, sometimes permanent side effects because of FLQ drugs. Now it is linked to Gulf War Syndrome. This is not scare mongering, this is trying to help our fellow human beings avoid the horrific side effects we have experienced.

    • SM June 16, 2015 at 12:27 pm Reply

      Dear Anonymous,
      I’m glad Levaquin gives you some relief. But no one here has claimed it doesn’t work at killing off the bacteria it’s designed to kill. As a matter of fact, many of us don’t believe it should be banned. We just believe it should be given from doctors who understand the side effects. And if they did, they wouldn’t be handing them out like candy for suspected UTIs and suspected prostate infections.
      Also, this is not scaremongering as you say. The people on this site aren’t sending you emails of warnings. We didn’t ask you to come on here and visit us. The site is for floxies to seek out help. And it’s also to raise awareness to those interested. If you’re not, go on your way.
      Lastly, this isn’t an incredibly rare reaction. There is a FB group with thousands of members suffering varying degrees of this. And some 20 or so new members are added each week. Doesn’t seem rare to me.
      So I encourage you to continue on your path. Take Cipro or Levaquin all you’d like. Personally, I’d rather die than take it again and suffer again. Of course, I’m not dealing with CF and can’t relate to what you’re dealing with. But I do know that people shouldn’t be given a last line of defense antibiotic for basic crap like suspected UTIs. It should be reserved for life or death situations. And yes, FQs were never designed to be a mainstream antibiotic. Never.

      • Linda Livingston June 16, 2015 at 12:33 pm Reply

        SM–well said.

        • SM June 16, 2015 at 12:45 pm

          Linda- Your response was much like mine. You beat me to it by about 2 minutes. :)

      • Anonymous June 16, 2015 at 1:06 pm Reply

        But the reason Drs are handing these out is because antibiotic resistance is a real problem now adays. People who don’t need antibiotics go to their GP and demand them for a slight cough or cold, or sinus infection; all of which will clear up without the need for antibiotics at all- just a bit of patience. Or people don’t finish the course they’ve been prescribed. Therefore, it leaves the more common drugs useless in many cases. By throwing fluorquinalones into the mix, the chance of resistance is reduced because the bugs are being hit by a different antibiotic. They aren’t just handing them out because they’re lazy- it is tactical in battling resistance.

        I don’t “like” to take Levo at all but I don’t have a choice. It’s a case of a reaction for me, or death and I have too much to live for not to chance it and hope the same thing to the same extremity doesn’t happen again. Ask anyone in the CF community about this topic and their response will be exactly the same as mine. I was terrified taking Levo for the first time after the cipro reaction. But I was OK and I live to tell another tale.

        No you’re not emailing me, but Twitter bots have been spamming me and my friends for weeks. I know first hand the horrors this drug can cause but I don’t send tweets to people saying “don’t take it”. That may or not be related to this page, but the point is, people are trying to stop people taking it & some people are easily frightened and will listen to a few people’s horror stories as opposed to the thousands of success stories their Dr has had with the drug.

        Having CF with an adverse side effect to Cipro very nearly killed me. Not being able to move around to help clear my chest meant that I saw a sudden and irreversible decline in my health and the ways my lungs functioned. I would never wish that on my worst enemy but my dr had my best interests at heart prescribing the drug in the first place. I don’t hold a grudge against her for that in the slightest.

        • Linda Livingston June 16, 2015 at 1:46 pm

          Sorry Anon but it is not just the patients “asking” for these drugs- yes, there is a problem with people not finishing ,etc, but had I finished mine, I don’t believe I would be alive today. As it it, I came very close to death. The big problem is doctors being woefully uniformed or just plain “lazy” (To quote pharmaceutical researcher Mahyar Etminan), The problem is the FDA that does the bidding of big Pharma and refuses to limit their use. Even the CDC recommends limiting their use to serious illness. They ARE becoming resistant for the very reason that they are prescribed for simple infections instead of the big guns they were intended for.

          As one with lifelong asthma, I can partially understand your problem. (and my breathing problems after cipro were not lung, but nerve/heart related. It was as if someone flipped the “off” switch, and for more than a month it was beyond terrifying.) What is interesting is that after being on prophylactic inhalers for decades, I was told that the inhaled steroids were exacerbating the FLQ toxicity. I could also no longer take prednisone—my “go to” when things got really bad every few years. (And after years of being told by doctors that the inhaled steroids have no effect on bones—guess what? diagnosed with osteoporosis in my early fifties. I also found out they had been suppressing my adrenals, by doing the work for them.) So–what the hell was I going to do? Have asthma on TOP of the heart/nerve breathing problems, which were already nightmarish? Well, I took a leap of faith with my naturopath and have been getting H2O2 IVs (which they also use now to treat lung cancer and COPD, although you would never know it from all the COPD drug commercials.) I weaned off the inhaler which I had been taking two puffs, twice a day. Guess what? No asthma so far.

          If you feel you need to be on FLQs then that is what you need to do. I will tell you though that if you are only seeing allopathic doctors, you are only getting a part of the picture. I also will say, not to scare you, but to educate you, that they now believe that the effects of FLQ are cumulative, and though you might do well the first , third or fifth time, you may have a problem on the 6th.

          I don’t tweet, so it is not from me, but every chance I get, I warn friends and acquaintances about the dangers of these drugs. I wouldn’t wish the hell I went through on anyone. And I KNOW they are not meant for simple infections. But they are a multi-billion dollar industry for bigPharma, so they keep getting peddled as a great drug by the sales reps and they doctors, who aren’t even aware of the black box warnings, give them out inappropriately, out of ignorance and laziness.

        • SM June 16, 2015 at 1:54 pm

          Anon- Personally, I don’t support the work of those on Twitter who are sending those tweets. Though I would say they’re just trying to impose change and save those who have no idea what this drug can do.

          I will disagree that doctors are prescribing because of resistance. J&J and Bayer have marketed well. They have made these drugs first line of defense drugs. So while they may be saving someone from that life threatening UTI or that death bed sinus infection, they are doing massive damage to not only the patients, but also the entire system. Why? Because when someone REALLY needs one of these drugs, as in your situation, they’ll be powerless if they’ve already taken them 7 times in the previous 3 years.

          Also, it might be nice to actually PROVE an infection before pulling out the heavy artillery. I’d bet, and this is only a guess, that half of the floxies wouldn’t be floxies had we A) been tested for an infection and B) given a more appropriate drug for the condition. I never had an infection and was never swabbed. I had never had a UTI but the Italian doctor handed over Cipro without a simple test even knowing I’d never had one. Do you know what my personal doctor said about this? He said he could recall the last time he saw a man with a UTI and would never have gone further without testing. But my story isn’t unique. Countless floxies have similar stories. Unproven infections of simple origin should not be automatically be given Cipro. Many in the medical field agree. I’ve hear doctors say, ” I would never prescribe that.”

          So if you think that FQs are your miracle drug, that’s fine. But it’s destroyed many lives as well. And it didn’t need to happen. Big pharma and the FDA are in bed together and any semi-educated American knows that. I’d use Cipro if I were you too. But do you really think getting floxed is worth it for a suspected UTI? Really?

        • Heather June 16, 2015 at 7:58 pm

          Anon,

          Fluoroquinolones should only be prescribed in serious life or death situations. If that is your situation and your only option then it is understandable that your physician would prescribe it. Unfortunately in many cases physicians are giving them out like crazy for suspected infections that are not serious. Honestly this medication should have an informed consent which would deter physicians from using it as a first resort. You may have a great physician but unfortunately most of them are uninformed and don’t even realize the extent of damage that can be done. Lastly this reaction is not rare, it may come in various degrees of seriousness or delayed which in term leads to the adverse reaction diagnosis to fall through the cracks.

        • Mark June 23, 2015 at 3:25 pm

          Guess you’re working for the medical system and never took Cipro before…

    • Rene June 16, 2015 at 4:10 pm Reply

      Please note that fluoroquinolones are “chemo-therapeutic antibiotics” that break the DNA strand of the persons DNA as it does with the bacteria. This is not worthy of causal use. Years of CFIDS, later to be diagnosed with Lyme…..fluoroquinolones are not and will never be suitable choices for that segment of the population or any other that is not at deaths door.

  11. Daniela June 16, 2015 at 12:50 pm Reply

    To the person who feels they can’t endure anymore:

    Depression is a side effect of all this. Try to think of it in a detached way. It’s like a stain on your shirt that you will wash off eventually. Think of something you love, that is beautiful to you or somehow makes you happy, remember that feeling and summon it when you feel down. Just like a muscle, you can exercise that and it will become easier and effortless.

    You will get better and/or adapt. You were hit with a freight train, it’s not going to go away quickly. If no one else is acknowledging what happened to you and respecting you for your battle, at least you can do that for yourself. You should be proud.

    • SM June 16, 2015 at 2:01 pm Reply

      Daniela- Thanks for your comment. For me, I’m not sure my mental faculties have been affected. I know my posts might make it seem as such, but I really believe my depression is sane, is normal. I don’t want to give up because I’m depressed. I want to give up because of the pain. When the pain goes, if it ever does, my desire to live will be stronger than ever. I do think it’s possible to feel like one wants to end their life and not be mentally unstable. I realize that the drugs can also affect this part of us, but in my case I feel my struggle to find the desire to live is purely out of a physical response to pain. Of course, I could be completely wrong. :)
      Thank you. I always appreciate a little positivity.

    • tricia June 16, 2015 at 2:04 pm Reply

      That’s a great post Daniela!!! So positive and I think we all need to be reminded that depression is a side effect of these drugs…

      • Linda Livingston June 16, 2015 at 2:07 pm Reply

        yeah, it’s like a double whammy. First, there is the side effect of depression, then there is the depression in response to the OTHER horrible side effects. Either way, if you can make it through that really black phase, which I truly thought I would not, then you can at least try to tackle some Cipro butt!

        • Anonymous June 16, 2015 at 2:41 pm

          I’m not an American. I live in the UK. I think the difference is, UK first line treatment is penicillin. I imagine it’s different in the USA but I can only speculate as I don’t know.

          I totally agree with you. Cultures need to be taken in order to establish the best line of treatment, but certainly in the UK speed and cost is the essence of he NHS. It’s cheaper and easier to take an educated guess at whether there’s an infection at all and if so, which antibiotic to use for it. Patients are impatient and sometimes the guess is miles out, which sounds like it could be the case in your situation.

          I know the bugs I grow on my lungs: they don’t go away regardless of treatment. Antibiotics just dampen things down until the next exacerbation.

          No FQs are far from my miracle drug (what sort of miracle would leave me wheelchair bound for 2 years??), but they hold me steady until I can fit in the next course of IV antibiotics (for two weeks which I mix and administer myself from home which is draining and exhausting physically and emotionally). I take levo every 6 weeks on average and have done for the past 3+ years. Fortunately the side effects haven’t been cumulative.

          I think you’re forgetting cipro destroyed my life too. I was a sporty, active, dancing, extroverted musician. Post cipro, I’m a wobbly, weak, quiet, 20 something year old who has had to make drastic life changes in order to try and have some degree of normality. This is not solely down to cipro though- CF has a lot to answer for here.

          But I’m happy. I’m so laid back I’m horizontal and I have so much to live for. Granted, I’ll be lucky to make 30 with the state my lungs are in now but I have to get on with life.

          I’m not belittling anyone’s reactions and experiences. I know how hard it is to fight for diagnosis and acceptance of this sort of reaction, but it’s really not worth the energy of trying to tell people not to take cipro. What happened to us is unfortunate, and yes maybe Drs do need to revise their prescribing methods, but get out there and enjoy the cards you’be been dealt.

          That is where I am leaving this debate. I know my attitude to the drugs are probably totally the opposte to many of yours. That is totally understandable, but personally, I’d rather have my life albeit more sedentary than I’d like than be able to run a marathon. I believe that I was given this life because I’m stubborn enough and feisty enough to do it justice and make something of it- as are all of you.

          Best of luck to you all.

        • Linda Livingston June 16, 2015 at 3:09 pm

          And best of luck to you too. I hope they find something that will help you. Truly wishing you the best.

        • Jason June 16, 2015 at 11:16 pm

          Anon I think you have still missed the main point all the others have made, since you still think “its not worth the energy to warn others”.

          When someone’s life is literally turned upside down and in many cases completely ruined for many years or in some cases even indefinitely, and all because the Doctor “over-prescribed” an unnecessary and unbelievable potent and toxic drug that was never even needed, you better believe that almost all of us here believe it is worth every single bit of energy to protect others from going through this torturous hell for in almost all cases, no reason at all.

          Yes, in some potential situations the drug might be the only option, and if it is going to save someone’s life obviously that is better than doing nothing. These situations however are so far in the minority that they could be said to be rare. Much MUCH more common is the hundreds or thousands of pills irresponsibly given out every single day somewhere in the World for MINOR and even “potential” aliments like “suspected UTI”, or confirmed UTI, “suspected sinus infections” or confirmed, etc etc as others have stated, all non-life threatening. This has been happening over and over again, for years and years (since 80’s), and people’s lives have been completely altered and/or ruined all because the drugs are being completely misused.

          So yes, its worth every bit of energy to save people suffering from minor ailments from having their lives unnecessarily and completely ruined due to shear irresponsibility.

        • Jason June 16, 2015 at 11:28 pm

          And this is also why you see even many former professional Doctors “spending energy” warning people about these drugs:

          http://articles.mercola.com/sites/articles/archive/2012/10/20/fluoroquinolones-side-effects.aspx

          “Quote” Fluoroquinolones: The Deadliest Antibiotics on the Market?

          If your doctor hands you a prescription for a fluoroquinolone antibiotic (this could be not only Cipro or Levaquin but also Avelox or generics ciprofloxacin, levofloxacin, and moxifloxacin, or others), be very certain that your condition warrants the risks that come along with taking these drugs.

          Fluoroquinolones have fluoride as a central part of the drug. Fluoride is a known neurotoxin, and drugs with an attached fluoride can penetrate into very sensitive tissues. The fluoroquinolones have the unique ability to penetrate your blood-brain barrier, entering your brain and damaging your central nervous system. Many of these drugs have already been removed from the market due to their toxicity, and those that remain are riddled with black box warnings required by the U.S. Food and Drug Administration (FDA).

          In a 2001 study by Dr. Jay Cohen, the following reaction rates were documented:

          – Nervous system symptoms occurred in 91 percent of patients (pain, tingling and numbness, dizziness, malaise, weakness, headaches, anxiety and panic, loss of memory, psychosis)
          – Musculoskeletal symptoms in 73 percent of patients (tendon ruptures, tendonitis, weakness, joint swelling)
          – Sensory symptoms in 42 percent of patients (tinnitus, altered visual, olfactory, and auditory function)
          – Cardiovascular symptoms in 36 percent of patients (tachycardia, shortness of breath, chest pain, palpitations)
          – Skin reactions in 29 percent of patients (rashes, hair loss, sweating, intolerance to heat or cold)
          – Gastrointestinal symptoms in 18 percent of patients (nausea, vomiting, diarrhea, abdominal pain)

          —-

          Given their potential to harm, they should be reserved for treating only the most serious bacterial infections that won’t respond to any other treatment; instead, they’re often offered for mild conditions like sinus, urinary tract and ear infections.”end quote”

  12. Maria June 17, 2015 at 12:41 am Reply

    Hi Everyone!
    I am so happy to have found this site, just learned a week ago about Cipro and it’s horrible side effects.. Been suffering for over a year now. Pretty much pain all over my body, from my neck to my toes. I am only 29 years old and have seen about 5 different doctors with no success. I’ve been diagnosed with Fibromyalgia and other autoimmune diseases. Which honestly think it was just a guessing game. However I am very hopeful because I’ve just scheduled my first appointment at a Clinic that provides IV vitamin infusions. I’ve been doing a lot of research in the last week, and at soon as I heard about Glutathione I googled for clinic nearby and thankfully was able to find one. I am excited and hoping that finally I get to have some relief, this definitely has been a nightmare. My story is just like Linda’s. I was prescribed Cipro for an UTI back in May 2014. I’ve suffered every single day ever since, the pain is unbearable, there has been many nights when I just cry and ask myself why would anybody allow this to happen to people. My life has changed drastically, I’ve always been a very active person, lost my job due to the several doctor’s appointments and now I am at home most of the time unable to do much, it is so frustrating!!. I wake up at night many times because of the pain, unfortunately as soon as I wake up in the morning the pain is still there again, it never goes away. My legs get very swollen, my skin is very sensitive and get bruises so easily. From my lower back all the way to my toes I have constant burning sensation and feel like a thousand needles are poking me at the same time. I am unable to walk for more than 5 minutes without feeling pain. I’ve tried several things/meds at this point, so I am definitely ready to try this last resort. Prayers would be definitely appreciated. Thank you for creating this forum, at times I felt so alone in this situation. But now feel like I am not the only one and that there is still a light at the end of the tunnel. Blessings to every person struggling because of this antibiotic, let’s keep supporting/encouraging each other and never give up!!!

    • SM June 17, 2015 at 1:01 am Reply

      Maria-
      Welcome and good luck to you with your vitamin IVs. Be patient. For some the results can be quick. For others it may take time. I’m not sure what you know about floxing, but please ask away. There’s lots of people to offer help.

    • Linda Livingston June 17, 2015 at 10:09 am Reply

      Maria, so glad you found the IVs. and after only five doctors. I went through to 12! I can tell you that my back pain, which was excruciating, has all but disappeared. I am not sure which of the IVs helped the most, but I would guess the phosphatydalcholine, which helps with nerve damage, or the hi-vitamin C which helps repair collagen, but I get a glutathione push with everything, so it could be that too. (all except the H2O2 –more for my lungs.) I hope you start feeling some relief soon. I started feeling the pain diminish in less than 2 months (twice weekly.) And yes, it is unimaginable to me that people can know about these horrific side effects and still sell the drugs, knowing they will be used for simple infections. The FDA is too beholding to the drug companies. They should be limiting the use of FLQs to only life and death situations. Anyhow, hope you are soon posting about how much better you feel!

      • SM June 17, 2015 at 12:52 pm Reply

        Linda- I have an IV today. I dabbled in them in February but maybe I didn’t do them enough. I’m back now and want to do them a lot this summer. How high is your C dose? In California, and maybe other states too, you can’t go beyond 10 grams without some special blood test. I did 10 a few times. Are you higher than that? I’ve known people to do 25 grams or more. I’m going to ask my ND about phosphatydalcholine today. I’ve never heard of it. Are you doing Myer’s as well? Twice a week for 2 months is a lot. These IVs run me about 200 per visit. Glutathione is cheap but the others aren’t. Again, maybe I need to do this way more than I have.

        • Linda Livingston June 18, 2015 at 8:44 am

          sorry SM I just saw this. Yes, I did the blood test for the Hi-C and am getting 50 grams. There is a very small percentage of the population that cannot get them. I did Myer’s the very first time I went and maybe one other time. I get H2o2 for my lungs, so the other trips are split, for now, between the ptc and the vitamin c. My Ivs run around $150—yeah, it’s a lot of money, but I really had zero quality of life when I started. I am way in debt and need to be well enough to look for work soon!

  13. Gina June 17, 2015 at 6:25 am Reply

    Rene,
    Great info you posted! What do you take for your MTHFR issues? I also have MTHFR issues. But am overwhelmed what to do!! Any advice you could give me would be greatly appreciated!! Thanks so much!!!

    • SM June 17, 2015 at 1:01 pm Reply

      Gina- That’s a great question that I’m sure Rene can provide some insight into. I have MTHFR as well- C677T heterozygous. I think lots of floxies have the MTHFR mutation, but many also do not. So I’m not sure if there’s any relationship. I know, for me, that I could not tolerate B12 in methyl form. Everything I read said that I should have been taking that form, but it gave me huge red bumps all over my legs. The worst part is that I thought it was just part of my floxing and didn’t connect the bumps until months later. Saw the dermatologist, who swabbed the bumps and the tested positive for gram negative bacteria (Suggested Cipro!). I finally figured it out and now take a different form of B12 that doesn’t bother me. I have no clue if that at all relates to MTHFR.

      • Gina June 17, 2015 at 1:45 pm Reply

        What type of B12 do you take? Is it helping? I also couldn’t handle the methylated B12 the dr gave me. Maybe the dose was to high?

        • SM June 17, 2015 at 7:34 pm

          Gina- There 2 types of B12 I’ve used without issue- hydroxycobalamin and adenosylcobalamin. Neither are easy to find. I bought Seeking Health’s version on Amazon but both are currently unavailable through that company. I started slow and worked up to 2000-3000 mcg daily. I could do more and may. There are other companies that make this type of B12.

          Is it helping? Not that I’m aware. But my B12 was the only abnormal blood test I had just 2 weeks after floxing. It had been 900 some time before floxing and plummeted to under 300 right afterward. My doctor was stunned that someone could drop that fast- apparently we have lots of B12 stored and it should take years to deplete it. Anyway, the supplements have brought my levels up, yes. They haven’t necessarily impacted pain. But my thinking has been, if I’m actually low in something, I want to supplement because I want my body to have what it needs to heal. So the B12 may not take the pain away after a few months of use, but it may give my body the tools to heal the nerves, if that makes sense. And that may take a while…But, I was low in it, then supplemented and it shot up, then I went off of it (because of the rash), and then it plummeted again. So now I’m not screwing around. I’m sticking with B12.

        • Rene June 17, 2015 at 7:41 pm

          For Hydroxycobalamin And Adenocobalamin support – a spray called BLACK BEAR is very useful for anyone with B12 issues. These forms are well tolerated by all. You can buy from them directly on line or through Amazon. I use this brand for a couple years know and it is easy and well absorbed. Taste is good too.

          God Bless,
          Rene

  14. tricia June 17, 2015 at 9:25 am Reply

    Jason,
    That’s interesting about the correlation of being in a place w non flouride water and feeling better! Idk if that’s a coincidence or what? I drink Reverse Osmosis water everyday, but obviously use tap water for showers, baths, washing, etc. I wonder if getting a reverse osmosis filter would help?
    There are several cities here in the states that have voted against using flouride in their water, unfortunately I don’t live in one of those cities……

    • SM June 17, 2015 at 12:47 pm Reply

      Tricia- I live in a city that doesn’t use fluoride. I have no idea if that has impacted me. I don’t feel worse when traveling but rarely drink tap water when traveling. I don’t know if it would matter, but I’d rather not take the chance. I feel the same way about any non-organic animal product including dairy, eggs, and all meat. No thanks.

      • tricia June 17, 2015 at 4:00 pm Reply

        Thanks for the response SM. I also avoid non organic meat/ dairy and never drink tap water. Still, it seems whatever I eat or dont eat, organic or not…. I always feel the same. Coffee, alcohol, soy, wheat, sugar….I don’t feel better or worse. The only thing that’s made any positive impact were Taurine and magnesium oil , as suggested by Rene. I definitely think this is all just a waiting game :)

        • kelhatesfq June 17, 2015 at 4:05 pm

          Cold water and positive thoughts are the only thing I’ve been prescribed in any fashion so far out of 50 items that have helped soothe things. Time = the best possibility for a lot of people

        • SM June 17, 2015 at 4:53 pm

          Tricia- My situation is similar. I haven’t reacted to much. I did have a significant reaction a year ago to a seafood meal. It was the one time I stepped out of my tight diet. All wild fish and seafood and I was immediately hit. The effects lasted a couple of months. Other than than, I’ve done paleo and all vegan- no difference. Alcohol doesn’t bother me. Nether does dairy. It doesn’t really seem to matter. I feel pretty much the same most of the time. Like I said before, I was very conservative before but I’m trying a few things now. Nothing that should hurt me too much, but just some things that might give me a boost.

        • Rene June 17, 2015 at 7:13 pm

          Hi Tricia, your response to Taurine is significant in that it is a sulfur based support which points to that you may respond well to Epsom Salt and high sulfur foods like garlic, broccoli.

    • Jason June 17, 2015 at 10:02 pm Reply

      Well as I alluded to above it is almost certainly NOT a coincidence at all, there is so much evidence to the contrary that in fact it is very close to being indisputable. I’ve also read many stories of people healing from Fluoride toxicity and some are simply by avoidance which is key and why I stress it every now and again.

      I also drink RO water and have done a TON of research on water over the years and use to sell water about 10 years ago. Unfortunately I have never had access to properly test the RO water I drink for Fluoride content, and there are conflicting opinions out there on whether or not RO can indeed remove it or not (its notoriously hard to remove), and of course everyone in the business has their own agendas so its hard to know who to believe. FWIW, I do believe it is one of the best “shots” we have to drink “F” free water, there are only a couple more options and again I really don’t know how much if at all more valid they are.

      An important note about RO water, it is very acidic and this I know for a fact. If the body is acidic it can cause inflammation, which is again something Floxies need to address and hopefully avoid making worse. The water is also stripped of minerals (and most of all the chemical garbage that was in it too) so someone drinking RO Water can kill 2 birds with one stone by adding minerals to their water before drinking it, which also brings its PH much more alkaline depending on the amount and what was added.

      • Jason June 17, 2015 at 10:11 pm Reply

        Here is just one story I am referring to which I have posted before and believe it is worth posting again. Its from the Earth Clinic which is a great website where people have been healing themselves naturally from a multitude of ailments for years and discuss their trials, tribulations and success’s in detail.

        Here is the story:

        Posted by Fluoridefree (San Diego, Ca) on 05/28/2012

        I’d like to say thank you so much to God for answering my prayers and thank you EarthClinic for helping to save my life. I have been so miserable with muscle pain, muscle twitching, jaw pain, constipation, dry eyes, dizziness, stomach pain, depression, anxiety, headaches, fatigue, itching all over even in my ears, pain under left shoulder blade, muscle contraction, and the list goes on. I have been terribly ill for over a DECADE. I have seen numerous doctors. At only 23 years old, several years ago the best advice one docter could give me was to start walking with a cane. Most docters wrote me off as a hypochondriac or tried to put me on anti-depressants.

        I’m a yoga teacher, so I’m very in tune with my body. I just knew it wasn’t “all in my head”. I tried several different remedies on EarthClinic through the years and tried cutting out many different foods thinking I had a food allergy. It literally felt like I was allergic to every kind of food. However finally after constant prayer, a very patient husband, and years of research; I figured our that my sickness had worsened significantly in 2008 when parts of San Diego began putting fluoride in the water. The intial exposure came from growing up in Indianapolis, IN. And I became extremely sick in 2011 after the birth of my daughter (anesethia has fluoride) and when all of San Diego County started fluoridating their water.

        After just one week of avoiding as much tap water as possible in food and drink and using a pinch of borax in reverse osmosis water, I feel like a different person. This IS a miracle! I had gotten to a very dark place. Even with the birth of my daughter, I had lost the will to live with so much pain. Just a heads up though, there have been several times where I took Lugol’s iodine and the detox symtoms were utterly unbearable. Blessings!

        • Linda Livingston June 17, 2015 at 10:32 pm

          yes, and it makes me crazy that the U.S. still puts it in our water. ” Most developed nations do not fluoridate their water. In western Europe, for example, only 3% of the population consumes fluoridated water…. There are more people drinking fluoridated water in the United States than the rest of the world combined.” (from http://fluoridealert.org/content/bfs-2012/) I have sent emails to U.S. reps, the president, the vice-president and many others begging them to look at this. I heard they recently decided to lower the amount, but they (we) need to get rid of it. It is just a byproduct of aluminum I believe, and I read (although I can’t recall where now) that the whole push to put it in our water was so industry could get rid of its waste.

        • Jason June 18, 2015 at 8:19 am

          Yes what they put in the water is not actually Fluoride or Fluorine but toxic waste “Hydrofluoric Acid”, its been called by many “one of the greatest crimes against Humanity this century.”

          Due to its extremely toxic and reactive nature, disposal was reported to be a huge problem with an extra huge cost tied to it, so a deal was made with the devil more than 50 years ago to dump it into the water supplies and tell people “it will be good for you”, a blatant and ridiculous outright lie

  15. Maria June 17, 2015 at 2:15 pm Reply

    SM and Lynda,

    Thank you so much for your response.

    Would really appreciate if someone can give me more info on Floxing, honestly I am not very familiar. I am just trying to get as much information as I can. Found out about Cipro just last week and I was shocked, almost every side effect is exactly what i am feeling. I reside in Minnesota and would like to know if there is any doctor here that would be willing to diagnose this as Cipro poisoning, not sure about your experience but it seems like there are not too many doctors out there well informed about this problem.

    • SM June 17, 2015 at 5:13 pm Reply

      Maria- I’m not sure where to start. I’ll give you some basics and then others will chime in. Usually, Lisa and Rene will provide some good information/tips.
      1. There is a FB group called The Fluoroquinolone Toxicity Group. It’s private but you just ask to be a member. There’s like 3,000 members. There are tons of knowledgeable people on there. A warning though: for some people, it can be overwhelming. So just be aware and don’t be afraid to step away if it’s too much to deal with.
      2. I’d advise you to avoid a few things and I think most floxies will agree: NSAIDS and steroids would be the top of the list. They can really impact your symptoms in a very unpleasant way and for a long time. I’d also watch your diet. Floxies will often react to certain foods but the foods are not consistent. Just pay attention. Personally, I do not eat meat that isn’t “Free of Antibiotics”. I also eat wild fish- most farmed fish and seafood are treated with antibiotics, some foreign stuff can be treated with FQs. I also eat only organic dairy and eggs. Not all floxies are that cautious, however.
      3. Be gentle with your body. Many floxies think exercise is helpful, but only when your body calms down a little and responds well. Early on, exercising can worsen things. Later on, it can help people out. Not all. But some.
      4. As far as what to take, that’s where it gets heated. Many people swear by certain things while others feel that floxies can overdue things and cause problems. Many floxies suggest magnesium, vitamin C, and maybe even some B vitamins. D can also be helpful as it seems a lot of floxies are low. Blood tests can help with B12 and D levels but it’s a useless test for magnesium levels.
      5. No doctor I am aware of will “diagnose” you with FTS. I decided I had it and told my doctors. I never asked them. But for me the reaction was very closely connected to the Cipro so it was a no-brainer.

      I hope that gets you started. I’m sure others will add on to these ideas.

      • Linda Livingston June 17, 2015 at 6:41 pm Reply

        I echo everything that SM said, and as has been mentioned before avoid fluoridated water. The fluoride component of fluoroquinolones is what makes it such a deadly neurotoxin.

        I too had no luck with MDs—and gave up after a dozen of them and many tests. Also again, magnesium is so important because cipro, levaquin, etc leech it from your body. It damages so many areas of the body as well as mitochondria, collagen, tendons, bone, etc, that its affects are widespread, and we don’t all end up with the same ones.

        Again, and this is only my experience–I was floxed mid February. I was bedridden weeks later, 30 pounds lighter, with blurred vision, excruciating pain and severe nerve-damage related breathing issues. I needed help to just shuffle, bent over, across the room. Two months after I started IVs, I am walking normally, look more like my old self, the pain is greatly diminished as well as the numbness, and the breathing, while still a problem is infinitely better than it was.

        Even if you decide not to do IVs I would recommend you call around to different naturopaths in your area, or better yet get a referral, who may be able to at least give you some good info on how to detox your body. (I was lucky because the one I see had actually worked with FLQ toxicity before.)

        Also, if you go to the resources section of the floxie hope site, you will find literally pages of links to articles, etc.

    • Gina June 17, 2015 at 5:54 pm Reply

      What part of MN do you live? There are some Natural Drs in MN.

    • Rene June 17, 2015 at 7:34 pm Reply

      Hi Maria,
      Sorry you have been injured too. I have just posted the last couple days a huge post but will add it once again as it has been cleaned up…more organized. In case you have not seen. Basic foundational supports to help your entire body handle the oxidative stress, inflammation, and pain. This is not a guarantee but a well considered and shared experience for many including myself. Just copy & past it to a word document for easy reading and Reference. It too tiring to read such small print for long posted information. God Bless you and may you recover and made whole. Amen.

      ASAP:
      WE are all ages, sizes, and weights here. Most everybody around the Globe who has been harmed by these drugs has benefited and NEEDS to get Magnesium “into the Cells”. That means you.

      Do not underestimate the recommendations here or what others and I suggest.

      This drug strips it out of the cells…. MAGNESIUM is needed for 700 different processes in the body. The entire muscle skeletal system. That means, Muscles, Tendons, Ligaments, All soft tissue…Also needed for the Heart, which is a MUSCLE! The NERVOUS SYSTEM, Blood Sugar Balance, BRAIN – Serotonin…. The list is very very long. You cannot get MAGNESIUM “INTO” the Cells unless you get “MAGNESIUM OIL SPRAY” and apply it to your body. This form of Magnesium is: Magnesium Chloride, which is a very effective way to get magnesium “inside” the cells and rapidly. You can buy it online From Ancient Minerals.
      Making your own spray is super easy and economical!

      It may tingle, or sting when first applied after 5 minutes or so…. that is normal. Just skin sensitivity. This will likely diminish after the first week or so of daily application. Apply anywhere from 8- to 20 sprays to your LIMBS ie. (The length of the limb including wrists and ankles & Hips, lower back sacral area)…these large surface areas are best. The delicate skin of the sides of neck may be sensitive…that is normal. If it burns to the point that you are in pain then of course by all means rinse off in the shower or just get a warm wash cloth and wipe of the residue. This is easily done. It is NOT an oil…. though the name suggests that it is. It is water, w/ Magnesium Chloride. Wash you hands after so your palms wont get dry. You may wish to wipe off the excess salty residue with a warm washcloth too. Wait 30 minutes or longer for complete absorption before wiping or rinsing off. You do not have to rinse off or wipe it off, but the first couple weeks can be helpful, while the skin is acclimating to absorbing. The residue can be drying at first.

      This is the # One thing you should start doing for yourself. And AVOID all over the counter meds, and prescribed meds. ADVIL, IBUPROFEN, STERIODS, ARE A BIG NO NO!
      They are NOT to be used. Will exacerbate the already severe issues caused by these drugs.
      I have copied & pasted older post I wrote, pardon the repetition where you find it.
      ——————————————————————
      The first 1 year is dreadful….but do not let it convince you that you cannot recover.

      These are not arbitrary considerations. These are directly to help address the long list of systemic issues that reveal themselves over the first & 2nd year of this injury.

      “ELIMINATE toxic sources….
      ADD nutrient based risk free supplementation to facilitate healing.

      A long worthwhile road to restoration and healing. “Systemic Musco-skeletal injuries” and Peripheral neuropathies…Neurological issues are the bulk of what you will be wading through. Pharmaceutical drugs will likely not aid you…. high risk or increased complications and pain.

      #1 ASAP: MAGNESIUM – your friend for years to come

      ORAL Magnesium – Magnesium Citrate -400 mg daily.
      Natural Calm is an excellent brand. It is Ionic powdered form. Amazon on line or Vitamin Shoppe, or IHERB are great resources for purchasing supplements.
      Do NOT take Magnesium Glycinate.

      Regarding Magnesium “GLYCINATE”: ——————————————————————

      The glycinate form has the risk of being issue for those with Neurological issues such as anxiety, sleeplessness, jumpy thoughts, tired but wired, lack of calm…being that glycinate can be a factor for the balance in the brain between GABA & GLUTMATE. You do not want to increase “glutamate” because it is stimulating…Glycinate is a risk in contributing glutamate. In fact it is a form of “glutamate” and therefore stimulation in excess, contributes profoundly to the anxiety…sleeplessness, tired and wired…etc. We are not designed to handle this regardless of the FDA’s approval of artificial sweeteners, aspartame, and “natural flavors”…MSG…. Hydrolyzed yeast and protein, or Autolysed yeast or protein….ALL which ramp up glutamate in the brain….over stimulation causing neurons to over fire….burn out, and die. FDA and the food Corporations at there finest.

      Fluoroquinolones disrupt this balance quite markedly for many…by interfering with the Gaba receptors… which are calming neurotransmitters…hence without that clear signaling you have “glutamate” stimulating and no Gaba to put on the breaks. Gaba supplementation is helpful but not without eliminating the contributions of glutamate that are artificial additives in the diet. Veg caps are important as they are Not made form Gelatin another glutamate exposure.

      The science is complex and therefore to cut to the chase: Glycinate is not bad, it is a only a risky contributor of excess glutamate & increased pain. Therefore must be considered for those individuals who are either ADD ADHD or Flouroquinolone poisoned…
      Eliminating excess contributions of those substances that cause unbalance between GABA & Glutamate is very important to turn things around. We are already exposed to excess glutamate in the various food & beverages, protein powders, sports products, etc. manufactured packaged foods allowed by the FDA and produced by the food conglomerates. The system created illness; we did not suffer with generations ago like we do today. Thanks to FDA and the food conglomerates who got the public in this mess.
      ————————————————————————————————
      #2 Trans Dermal Magnesium OIL SPRAY Instructions for making your own.

      1lb bag of it and made 1 equal parts filtered water to 1 part Magnesium Bath Flakes. ¼ cup Magnesium Bath Flakes to ¼ cup Filtered water placed in shallow pan (non aluminum) low heat till flakes dissolve in 60 seconds…will give you 4 weeks supply. Simply pour carefully into small glass spritzer bottle that can be purchased at health food stores like Whole Foods…or online. They are typically cobalt blue 2ounce or 4 ounce.

      The spray – sprayed into palm and applied to hips, legs arms as needed. You do not need to use more than 8- 20 sprays….in fact best to start conservatively. Just 8 sprays….or 4 sprays 2x’s per day……. It may sting some…totally normal & OK…but if burns, then just rinse off or wipe off with Wash cloth. Dilute by 1/2 and apply as you did before.

      ** (Intracellular needs are only met by this form of magnesium and trans dermal through the skin.) Oral supplementation cannot achieve the levels needed intracellular.

      You will likely experience 3 days of substantial relief… However…count the number of sprays you have used so you can easily calibrate dosage. Decrease dosage or frequency because once you are saturated more is not better. Calibrate according to your own individual needs.

      3) Epsom Salt Baths – Magnesium can be absorbed into the cells far better than just oral Magnesium. This is inferior to using the MAGNESIUM CHLORIDE BATH Flakes as a Spray. Epsom Salt is also Magnesium Sulfate, which is not bad, But less efficient than Magnesium Chloride / Magneisum Oil Spray. Sulfate is also not always well tolerated by everyone…..

      Cipro interferes in the intracellular magnesium so this is why the trans dermal method is so significant . Do NOT buy, Epsom Salt w/any Aspartate, Aspartic Acid or anything that says anything but Magnesium Sulfate. Aspartate is an excito-toxin to the brain.

      A comprehensive approach really has served all of us who have made progress, in that one with out the other would not be sufficient.

      A) I had all my Hormones levels checked: Estrogen, Progesterone, Testosterone, Thyroid T3 T4, DHEAS, Pregnenolone. I was low in everything. Supplementation was only with bio-incidentals. NO synthetic pharmaceuticals. These supports were deployed by trans-dermal cream or tablet. Hormones have a huge say in many processes in the immune system and Brain and everything else…The idea is how to treat yourself holistically. Whole body. Not symptoms. Symptoms indicate issues with systems. Endocrine affects all the other systems.

      B) Vitamin D levels.
      Crucial! Vitamin (D3) supplementation is profound if your levels are low.
      Mine were low. I take 10,000 IU daily from Thorne Research (excellent quality brand) and just one small Vegetarian capsule! Vitamin D3 is a hormone…very profound need by all. The United States is deficient. The minimum to address deficiencies is 2000 -5000 IU…

      C) Vitamin C IV Drips! This will help the cells with anti-oxidants which is needed for such a great burden of Oxidative stress on the body/hence the pain. Cannot be achieved by oral Vitamin C, (1.5 hours or longer for an IV but well worth it, no joke) Your Cells will love it. Naturopath’s who do IV therapies provide this form of therapeutic care.

      D) Take ZINC Picolinate – USA everybody is deficient. Wound healing, immune system, and 100’s of enzymatic processes in the body.

      E) Avoid MSG, Natural Flavors, Hydrolyzed or Autolyzed anything! Do Not use artificial sweeteners!! they are very toxic to the brain. Nothing with Glutamate, Glutamic Acid, Glutamine, Glycine. Makes pain worse. No to chewing gum, and fluoride toothpaste.
      AVOID: packaged food -with preservatives, & chemicals. The burden on our detoxification pathway has been altered making us very sensitive to the exposure of the junk in manufactured, processed food…If God made it, it’s ok. Man made likely garbage.

      G) Drink water through out the day!!!! Everyday. You don’t have to guzzle, but drink through out the day. Hydration very important.

      H) Consider purchasing from LIFEWAVE on line the ” Y-AGE Glutathione Patch”.
      Helped me tremendously, with fatigue, some kinds of pain, brain alertness, and sense of well being! This is non-trans dermal patch worn on meridian points. Nano- technology raises the glutathione levels within the body. The most powerful necessary anti-oxidant and detoxification that the body utilizes to handle the burden of chemicals/ drugs and i our environment. The body will make more of it’s own. Nothing goes into the body. Instructions will come with it where to place it on your leg or foot or abdomen. They ship all over the world. The guy behind it came out of Nassau. Will be worth you purchasing for approx: $80 US dollars for 30 day supply.

      If you become a member the price drops. (You do not have to buy monthly) You can rotate patches. Take off at bedtime or may not fall asleep. The fatigue is because of the high Oxidative stress happening. Counter by doing the mentioned above.
      Also, Naturopaths that do IV Therapies such as “Vitamin C” often also offer “glutathione” as a push. This is an intravenous 15-minute push. Not painful, very safe and can really help with the neuropathy and pain in your feet or elsewhere and detox.
      The Y-age Glutathione patch is the more economical way…and it works by increasing your own glutathione levels. However trying a glutathione push one time maybe worth your while too. It may give you insight as to how adding antioxidants such as Vitamin C & Glutathione are so very valuable.

      G) AVOID: packaged food -with preservatives, & chemicals. The burden on our detoxification pathway has been altered making us very sensitive to the exposure of the junk in manufactured, processed food…If God made it, it’s ok. Man made likely garbage.

      H) Drink water through out the day!!!! Everyday. You don’t have to guzzle, but drink through out the day. Hydration very important.

      ANXIETY /SLEEP PROBLEMS /
      OVERLY SENSITIVE to SOUNDS / Twitching…TIRED & WIRED
      —————————————————————————————–
      L-Glutamine is very helpful to rebuild the gut lining… however it is extremely deleterious when supplemented for those with GABA & Glutamate issues. Same thing with Whey… which can really be an issue for those with glutamate issues. Glutamic Acid found in many vitamin formulas can also be problematic. ….. I am one of those individuals. I do have, Gaba / glutamate & folate issues, methylation issues. Because of this possibility for others it is best to proceed conservatively with the bio-chemicals that tend to be with the least potential issues.

      1) L-Theanine…it can help balance some of the anxiety you are experiencing from lack of Gaba…leaving you with too much Glutamate unopposed. Cipro affects the Gaba receptors in the Brain. 200 mg am – 200mg pm not more than that. I use at bedtime as needed. Purchase L- Theanine Brand that only ingredient is L-Theanine and nothing else. Some brands add Calcium. NO supplemental Calcium should be used.
      ——————————————————————————————————————-
      Do NOT take any “supplemental” CALCIUM. This will make things worse regarding Brain Health – for those of us with Anxiety, feeling tired and wired, lack of calm in our thinking and mood. Wired & tired & pain issues. This also applies to autistic children. What we share in common is an issue with balance between Glutamate & Gaba in the Brain. Will WORSEN NERVE PAIN.

      ALSO need to AVOID! MSG, Hydrolyzed or Autolysed Yeast, Natural Flavors. And high glutamate foods like BEETS, Legumes, which will “ramp up” the Glutamate in the Brain without Gaba to oppose it and keep things in check/balance.
      ———————————————————————————————————————-

      2) OMEGA 3 – Fatty Acids. BRAIN – inflammation – “Nordic Naturals” – makes excellent quality brand. Vitamin Shoppe, Amazon, IHERB can buy from on line. Quality matters.
      This is also a CNS – Central Nervous System – injury. 3000 mg daily = 2 caps 2x day.

      3) Phosphatidylserine –
      Helpful for the cell membrane to keep it fluid, and able to absorb and detox waste/Brain needs this.

      4) Ubiquinol – The active form of “COQ10″ for “energy production of the cell”, supportive for the mitochondria
      .
      5) Veggie Cap GABA
      This can help supplement the need you have…for Gaba.
      Just to clarify, everything that I wrote to you is not arbitrary or general….the forms which each supplement are in, is for a reason. ORGANIC FOOD as much as possible!!! I also want you to know that what you have described is not unique to you…. You are not a freak, or weird, shocking, as it seems there are thousands upon thousands who have been injured by this class of drugs.

      Fluoroquinolones are “chemotherapeutic drugs” being used as antibiotics. This information is easy to find but with held from the medical community as a whole with the full knowledge of the FDA and the pharmaceutical companies. It is a complete disgrace that this has continued for 20 years!! Knowingly profiting off from maiming the public.
      I encourage you to feed your ears, eyes, and thoughts with all things that are of love, joy, laughter, and worth your precious life. Skip the ugly; television programming that offers little to inspire or uphold that life is worth anything at all. You need all that can support you and provide nourishment for your spirit and healing form these injuries. We are designed to heal, and the medical establishment seems to believe otherwise…. and so they base their decisions on suppression of symptoms….with their drugs….which create illness after illness.
      God Bless

      • Jason June 17, 2015 at 9:45 pm Reply

        And of course when you are drinking all that water which is a great recommendation Rene is making, just please please make sure it is fluoride free water or as close to it as you can get, we are all fluoride poisoned here and it causes in my opinion many of the symptoms people experience so ingesting more fluoride can almost certainly make things worse.

      • SM June 18, 2015 at 8:06 pm Reply

        Rene- This is really great info. I know you’ve posted it before, but I REALLY read it carefully this time. A couple questions?
        1. I have had a white blood cell tests done to measure virtually everything. My glutathione levels were good. Would there be a reason I still might do a glutathione push? (I’ve done about 5, all before I was tested. Didn’t notice a difference.)
        2. That same blood test did show I was low on cellular magnesium. I don’t notice any symptom change when taking magnesium, oil or orally. I assume that you, if you were me, would continue taking magnesium and applying the oil indefinitely even without a change of symptoms. Would that be a correct assumption?

        Thanks, Rene, for you time.

        • Rene June 19, 2015 at 8:29 pm

          Hi SM,
          Due to concerns some have with shared opinions, let me say that my opinions have been derived from my research and my own personal experience and no I am not a professional medical practitioner. The insights that I have came from living through Lyme and then of course Cipro. These

          Glutathione “push” has it’s value but it also has it’s limitations and potential reasons not to get a “push” or rather ongoing weekly pushes.

          For me the first two were pretty helpful with neuropathic pain, and I did notice an increase in my energy on the days I received it. But then I found that the subsequent pushes made my nerve issues a bit more pronounced. I am not alone in this. Others have fared well at the start….but then like me they backed away from it. It did not hurt me, so that was not the issue…..but it is a sulfur based biochemical and that is my area of restrain if you will. NO MSM, or Frequent Epsom Salt Bath, or high dosages of Alpha Lipoic Acid. for me…..all sulfur based. These are all perfectly healthy and needed nutrients but for folk like me to supplement with them can be problematic. So often not at all or very low dosages. This is a genetic issue….The sulfur is not used properly and sits around as a Sulfite which is not a good thing.

          As Far as Not experiencing any improvements from using Magnesium Oil Spray, that is surprising. The spectrum of improvements can be anything from feeling more relaxed, better sleep, and ease in ones body as far as feeling rigid…..to decrease in pain, mood improvements, aches diminished, and to a degree Neuropathic pain.

          The RBC magnesium test, though not optimal is better than any standard blood test that is run. Standard blood test do not give evidence of “intra-cellular” Magnesium. The RBC Mag test can be purchased online for $50 through online web sites like http://requestatest.com/magnesium-rbc-testing. Do not accept that your magnesium levels are normal if your doctor has ordered the inferior “serum” magnesium test.If your serum magnesium levels are shown to be high your doctor may assume everything is fine and lead you to believe there is nothing to worry about. Because as the magnesium inside the heart cell goes down, the body tries to compensate. So the “serum magnesium” actually goes up! Urine analysis is good to do through Metametrix or Doctor’s Data through your Doctor and might be covered by insurance.
          Naturopaths, Functional Medicine Doctors, Osteopaths are the one that typically will order those type of tests. Standard Medical doctors just look at symptoms, standard blood work and choose from the drug menu to suppress symptoms.

          You really need to sit and deliberate in your own understanding of your body to decide whether you believe Magnesium levels to be adequately supported. I tend to lean in favor of it’s trans-dermal use, with some ORAL magnesium Citrate, becuase of the the nutrient poor foods that are all derived from the nutrient poor soil. It certainly will not harm you, or is it costly.

          i hope this helps you reason through this,
          God Bless, and keep your faith rooted in all that is good.

        • Linda Livingston June 19, 2015 at 9:42 pm

          Well this just shows how different we all are. I’m with you on the magnesium–I take oral supplements and the occasional Myer’s cocktail that has mag in it…but mag oil did absolutely nothing for me. Also, I have gotten a glutathione push with almost all my twice weekly IVs and my progress, with the exception of breathing issues, has been remarkable in just two months. Fortunately, unlike chemical drugs, most of these things will not harm you if you try them.

        • SM June 20, 2015 at 9:04 am

          Rene- Thank you. I will continue with the magnesium simply because I don’t believe a moderate dose will hurt. Also, I am low as proven on a WBC test. Next time I’ll do the RBC test, but this one was done through my ND. It was expensive and comprehensive- everything from minerals to vitamins to antioxidants. My deficiencies were D and B12, which matched basic serum tests. And then magnesium.
          I’m using mag citrate now. Had to start slow with it as it certainly gets things moving.
          It is my understanding that mag levels can take a long time to replenish so I’ll continue indefinitely. I’m aware of several floxies who took mag for 6-12 months before noticing significant changes. Who knows if that was from mag, but I’ve got lots of time…been two years and counting.
          Thanks for your reply.

        • Linda Livingston June 20, 2015 at 9:14 am

          Magnesium citrate is fine, but it does have a laxative effect. Next time you might want to purchase this (from Natural News) “Magnesium glycinate — Magnesium glycinate (magnesium bound with glycine, a non-essential amino acid) is one of the most bioavailable and absorbable forms of magnesium, and also the least likely to induce diarrhea. It is the safest option for correcting a long-term deficiency.”

          Learn more: http://www.naturalnews.com/046401_magnesium_dietary_supplements_nutrient_absorption.html#ixzz3dcT9ZIwp

        • SM June 20, 2015 at 10:22 am

          Linda- I have used glycinate for several months. I’m trying citrate off Rene’s suggestion actually. If you see her earlier posts, her research suggests that glycinate can excite the nervous system. But I agree- glycinate was very easy on my system. :)

        • Linda Livingston June 20, 2015 at 11:08 am

          Whatever works for you. A search for bio-available magnesium will show the different types and benefits/side effects.

  16. Jane June 19, 2015 at 6:29 pm Reply

    It’s been 2 years and 3 months since I was floxed. I was hit the hardest in the tendons, and was crippled for a very long time. I am finally walking again. I’m able to walk around my house without needing crutches or a cane anymore. Other than brief, mild flare-ups, I can walk without pain, though tendons do feel a little stiff.

    Being able to walk has revealed another problem though. It’s one that I didn’t realize I had when I was laid up for so long with my feet propped up all the time. I really only started walking pretty well about 4 or 5 months ago and only started walking a lot more than usual, including standing for prolonged periods of time, about 2 months ago.

    This has revealed that I’m having a circulation problem; it’s venous insufficiency from what I can tell. It became really evident a few days ago after an unusually long day of standing and walking. The next day, my feet were numb and a little swollen, my toes were cool and slightly bluish, my legs slowly turned a pinkish red from broken capillaries, and arms and legs felt like they were made out of lead. Since I started walking, I also have developed a small leg ulcer on the outside of my left ankle that changed from looking like a pale scar to having a bluish purple border after than long day of walking and standing.

    I’m still eating a very healthy diet with lots of fresh veggies, like I have been since I was floxed. I’m still taking a good multi-vitamin/mineral supplement, vitamin C in high doses, and magnesium citrate. My blood pressure is perfect, and I’m not overweight. Actually I’m still underweight and suffered some muscle wasting from being floxed. Sometimes I do worry that one of the muscles that was hit was my heart.

    I have upped the cayenne, garlic, turmeric, ginger and other blood thinning spices and foods. I’m planning to buy some support hose. I refuse to see a doctor about this after all the harm the last one did to me with Levaquin.

    Has anyone else experienced circulation problems as a result of being floxed, and if so, what did you do that helped?

    • Linda Livingston June 19, 2015 at 8:13 pm Reply

      Hi Jane—so sorry it has taken so long, but glad you are finally up and about. I don’t blame you for not wanting to go back to an MD. I lost all faith myself. First, since you mentioned your heart, I have had severe breathing problems and one pharmaceutical researcher suggested it was perhaps caused by mitochondrial damage to the heart muscle. I was on Cipro, and the FLQs are known for mitochondrial damage.

      I would suggest that you might want to look into electromagnetic therapy. My naturopath is going to use that with me at a later point—right now I am focusing just on getting IVs–HIgh dose C for collagen repair, phosphatydalcholine for nerve damage, and a couple others for specific problems, like asthma, which I can no longer treat w/ inhaled steroids.

      I was curious and found this site online, that offers some suggestions> http://www.veinhealthcarecenter.com/patient-information.php?Alternative-Treatments-3

    • SM June 19, 2015 at 11:24 pm Reply

      Jane- Sorry. I do have some circulation issues I believe, but not to that extent. I have cold feet and early on, I had some vasculitic rashes/spots on my ankles. This was very early, maybe month 3-4, and it disappeared quickly and never returned. My feet are cold, like I said, but I’ve never had the discoloration you’re experiencing. So sorry.
      I’m sure you’re aware that the Flox Report refers to vasculitis quite extensively. Some even suggest that poor circulation is at the root of many floxed people’s issues. I have no ideas on how to resolve it though. Sorry.

      • Daniela June 21, 2015 at 11:51 am Reply

        It’s relatively easy to improve circulation. Standing, gently lift your arms above your head for less than a minute, then slowly lower. You will feel tingling in your fingertips. Continue with yoga or tai chi exercises for all the other parts of the body to improve circulation. No shipping and handling, no purchase required ;)

        The Govt of India just published a gentle yoga guide which you can find on their site for International Yoga Day 21 June, under the heading “Common Yoga Protocol.”

        http://idy.nhp.gov.in/

    • Heather June 20, 2015 at 8:56 am Reply

      Hi Jane,

      I definitely experienced circulation problems. Would get swelling in ankles my feet would go completely numb and left hand sometime. One time I got on of bed and fell because I had no feeling from mid calfs down. Over time it has improved a lot but still not perfect. If I hold phone for an extended period of time my left pinky goes numb. I iced my ankles and knees alot. I have taken various supplements but nothing specific to vascular health.

  17. ursula June 20, 2015 at 6:07 am Reply

    http://ghn.thegraychannel.com/uncategorized/iodine-for-cipro-and-levaquin-damage/

    they say iodine removes fluoride
    I remember Dr Terry Wahls also mentioned iodine in het protocol

    • Jason June 20, 2015 at 10:41 pm Reply

      That’s a good written article from yet ANOTHER Floxed user who has found VAST improvement by taking Iodine. It also links to other interesting and informative articles, such as Iodine helping to heal PN, and even a specific group of Floxies on Facebook who are completely focused on using Iodine to help cure themselves, people would do well to read it.

      My very first post here at FH about 6 pages ago was about how Floxed people are Fluoride poisoned and I asked why no one here was talking about using Boron/Borax and Iodine to help, as there is much evidence and many many stories around that these are the 2 things that can help the most. I also noted that it is VERY possible, that by detoxing Fluorine out of the body, it is quite possible you might be getting rid of some of the rest of the stupid drug that was attached to it when you swallowed or had it stuck in your veins.

      I found the response quite disappointing and couldn’t figure out why this was not a more hot topic here, but then I suppose the overall complexity of the Human Body combined with the complexity of a Floxed Human Body can make important info like this slip through the cracks. Still, I found this to be one of the best sites on the net for Floxies (esp the stories and comparing them for ideas), but I started Iodine and Borax almost immediately unlike anyone here that I’m aware of, and am convinced its one of the main reasons I eliminated 22 of 25 symptoms in 12 weeks, and I’m also convinced that when I had the inevitable relapse it was a very minor one (unlike many who have worse ones) because I have indeed purged a good amount of this junk out. Now I am just one more success story to add to the list thanks to following what many others before me have done.

      • Jason June 20, 2015 at 10:57 pm Reply

        Just another tidbit that came up when looking through the comments on that article.

        https://www.integrativepsychiatry.net/urine_halides_doctors_data.html

        This is a test that looks for Halides like Iodine, Fluroide and Bromine (found in high amounts in many breads). Bromine and Fluoride can displace Iodine, which can screw up Pituitary Gland, Thyroid etc (and much more). Want to know how they test your levels of these elements? They do what is called an “Iodine loading test”. Why they do this is because while Bromine and Fluroide can displace Iodine, it works the other way around as well, so you take Iodine to displace (remove) Fluoride and Bromine from the body. There are multiple sources on the Internet talking about this, and again multiple success stories (like the one I posted further up the page) talking about how they healed themselves using with Iodine, Borax or like in my case, both.

        “Quote” Urine Halides by Doctors Data is a comprehensive assessment of iodine as an essential element required for normal function of the thyroid gland, immune system, and the integrity of thyroid and breast tissue. Sub-optimal total body iodine status is associated with insufficient intake of the essential element and excessive intake of the highly antagonistic halides; bromide and fluoride. Iodine sufficiency and the retention of antagonistic bromide and fluoride can be readily assessed by analyses of iodine, bromine and fluoride in urine after administration of a loading dose of iodide/iodine. “End Quote”

      • Jane June 21, 2015 at 8:35 am Reply

        That’s interesting, Jason. I have heard testimonies from people who used a 5% Lugol’s Iodine Solution to clear up skin lesions only to discover that they had other health issues clear up as well, and that was just from painting iodine on the their skin lesions. Like magnesium, iodine can be absorbed through the skin.

        I also recall reading that about 40 years ago, the food industry switched over to using bromine in breads and that thyroid disorders have increased exponentially since then. Supposedly the thyroid can’t tell the difference between iodine and bromine, so the thyroid will suck the bromine up, displacing the iodine in the thyroid. It is said that iodine therapy can help the body eliminate all kinds of baddies, like fluoride, bromine, lead, aluminum, mercury cadmium, arsenic, etc. Definitely worth looking into.

      • Linda Livingston June 21, 2015 at 9:17 am Reply

        How timely. One of the naturopaths I see mentioned Iodine to me last week. She said that even a lot of NDs won’t recommend iodine, but she does. She didn’t mention taking it with anything else though. Gonna give it a try.

      • SM June 21, 2015 at 1:19 pm Reply

        Jason- I looked a the article you’re referring to and have also come across that FQ group that advocates iodine. Did you follow the iodine protocol referenced in this article?

        I’m off to do a few things but I’ll reread the article tonight and also look at the links.

        Thank you.

      • Jason June 21, 2015 at 7:51 pm Reply

        Indeed there are many reported benefits of getting enough Iodine and like you say it can apparently detox much more than just Fluoride, Dr. Sircus swears by it for many things actually, “Quote” After we understand that iodine is an excellent antiviral, antibacterial, anti fungal, mold and yeast agent we begin to glimpse the catastrophic mistake made for substituting pharmaceutical antibiotics for iodine.”

        http://drsircus.com/medicine/cancer/the-end-of-antibiotics

        So it reportedly can be used to even help kill Candida, which the Floxie who wrote article above was also doing besides helping to heal from the quin drug as well.

        —-

        I did not follow the protocol mentioned in that article, I more or less came up with my own based on all my research, I was also leery of going to some of the high amounts that some users do as it does still seem controversial and you can damage your Thyroid if you are not careful.

        The author of that article definitely did some of his/her own research, and gives some good overall advice there like especially starting low and slow, expect some detox effects at some point, Floxies need to be extra cautious etc.

        What I myself generally did was the following:

        1. I used Exercise, Sauna, Iodine and Borax to mobilize and help remove toxins.

        This is an extremely aggressive approach as I was desperate to purge the stuff ASAP in the hopes I would do the least amount of damage and get rid of the symptoms as fast as possible. I also did not have a severe reaction by anyone’s definition, so felt confident enough to take this approach.

        Note that when you do this whether aggressive with all or cautious approach with 1 or 2, once you mobilize any toxins you are opening yourself up to potentially becoming more damaged, as now toxins that were stored become free radicals and start floating around in the body damaging cells, DNA etc everywhere they go. Also, the Fluorine element of the drug is extremely reactive as mentioned before, and depending on your overall toxic load it can now be attached to other nasty elements that were also stored in you, things like Aluminum, Cadmium, maybe even Mercury and to me this explains why some Floxies have relapses that exhibit even worse symptoms than the original Floxing. Note this is just my own opinion and theory based on nothing more than my own research, knowledge and logic.

        With the above in mind, you can see that anyone who is already suffering a LOT of nasty symptoms and/or having a severe reaction should probably avoid doing any of those things and just be sure to avoid more Fluoride, the last thing you want to do if you are suffering in a big way is make yourself worse and do more damage. For other people who don’t fit that category, you will have to decide whether or not to stir stuff up in order to purge more of it out. Anyone who does this should strongly consider the following:

        2. Helping to prevent damage. The body naturally produces antioxidants, but is now in a weakened state and is overloaded with junk especially if you are mobilizing even more of it so the body will need extra help. Vitamin C (lots), Gluathoine, NAC and anything that is a precursor to Gluathoine should help a lot. Selenium helped me greatly and is recommended by many sources, I took this daily and noticed a difference with the very first dose. You can also take Vit E and Astaxanthin for a multi-pronged approach if you feel you need it (I sure thought so and did it)

        3. Soaking up the toxins – ie helping the body remove them. The body will naturally detox these things, but again for most people is now overloaded and we can help it in several ways by consuming things that will bind to the toxins helping them to exit ASAP to prevent further damage. Eats foods high in fiber and sulfur, fiber is very important here. Spirulina & Chlorella can work well but you need to ensure you are buying “clean” products, as they are very absorbent they can be polluted from the get-go if not. Drink Chlorophyll Lemon Water, this is a great combo that has many benefits. Baking Soda can help with symptoms and other things. I don’t know much about this one, but I’ve seen activated charcoal recommended for binding to toxins. I also use Clay to bind to toxins, but there could be potentially downsides for it too, I mix mine with Psyliuum Husk.

        I hope that helps some of you if you decide to go this route, I really should have my Iodine level tested (Thyroid was fully tested, did the “patch test” for Iodine which seems like a basic guide but not entirely accurate of course) but I am still using Iodine to this day on my skin and sometimes in water internally (and of course I am unlucky in that I have to shower each day and absorb more Fluoride through my bodies largest organ).

        I did do many other things not listed above as well, Floxing does such extensive damage and I did not want to leave any stone unturned. Supporting severely ravaged joints. MAG for many things like sore tendons, muscles etc plus replacing what Fluoride was stealing. Melatonin, Gaba, Valerian root and more to help with insomnia from drug. Things to Alkalize body and help with all the pain and inflammation drug caused. Supporting an already damaged and further damaged Liver. Probiotics to help restore the gut balance. Vit D and others.

        There was even more, but I think I have now listed the most important things I did, and to me all of them were necessary for a newly Floxed person.

        Healing from this absolutely awful drug is a VERY tall order indeed, and I wish there was some easy way for everyone to do it but of course there just isn’t, and some are in for a really long hard journey unfortunately which is really heartbreaking. If only we could take some of the big wigs at Bayer and shove a bunch of this drug down their throats, maybe then this garbage would be taken off the market if we threaten to keep doing it….

        • Linda Livingston June 21, 2015 at 8:02 pm

          and speaking of Bayer, Jason, I had 60 minutes on and Leslie Stahl was doing a piece on the outrageous cost of drugs for cancer. (uh—$60,000 for another month of life?) so I wrote 60 Minutes and told them about our experiences with the greedy Big Pharma, and mentioned Bayer specifically. Some day, some time, I hope I will get someone to do a piece on this that is more than just local. (Of course, with all the drug ads you see, I know there is enormous profit from ad revenue—but this is too big a story whose time has come.)

        • SM June 21, 2015 at 8:22 pm

          Jason- Thanks for that comprehensive reply. It’s interesting. I think the prevailing belief among experienced floxies is that the stuff doesn’t stay in our systems. But there are plenty of people who believe that it does. And there’s people like Melanie who were recovered only to have a full-on relapse that lasted more than a year after exercising. And that seems to support the theory of it being in our tissues and being mobilized.
          I’ve just returned to exercising. I did a little throughout my process but was too afraid to hurt myself, my tendons. The past 2 weeks I’ve done some running on a treadmill which is something I never thought I’d do. Up to a mile. My body hasn’t seen bothered. It also started doing some weights. Again, the first workout I was very gentle. Then I pushed a little more in the second one, still being cautious. And today, I pushed quite hard. I’ve been noticing that my hands seem nervy lately. And maybe, the exercise is mobilizing some crap. Hmm. Not going to stop. I’ve read about several floxies who really benefited from exercise once they were way passed the acute phase. And as long as it’s just a minor uptake in nerve issues, I’ll ride it out for a while. I do happen to be doing glutathione and C IVs so based on what you said, the timing could be good.
          Thanks again for the comments. Much appreciated.

        • Jason June 21, 2015 at 8:35 pm

          Here’s another Borax success story from the very useful Earth Clinic. Here at this link you can see 4 pages worth of people discussing what they did to heal or try to heal from Fluoride poisoning. I really like reading these kinds of stories and hope u do too

          http://www.earthclinic.com/cures/fluoride.html

          Quote” A brief history. 7 years ago thyroid cancer, the next year adrenal fatigue then early menopause, the following year uterine prolapsed followed by hysterectomy- the following year fibromyalgia and neuropathy. Early Childhood was fluorinated water along with fluoride tablets. Fall of 2008 I was looking at total disability. I could barely walk and couldn’t sleep because of the pain and was throwing up daily from the pain in my back. I was on many medications that gave me no relief and I have since found out that they had fluoride as a binding agent. I was sure that my life was over at 45, but thanks to Ted and Earthclinic I am almost at 100%. After reading about fluoride I came to understand where all of my problems originated. I had all the symptoms and reactions. It has been an uphill battle with my doctors and relatives, but you can’t argue with a body that is almost pain free. I began the borax detox of 1/8 tsp in a liter of water and within 3 days my symptoms were almost gone. I watch everything I eat and can detect fluoride in vitamins, foods and drinks within 15 minutes of ingesting it. I still suffer from the neuropathy and some pain from the neuropathy but I am off all meds and I have my life. I only wish more people would try to understand the fluoride connections. My sister and mother both suffer with side effects of fluoride and I have only been able to influence my mother. I still borax 5 days on and two days off and give my body a break every month or so for about a week. Thank you :)

        • Glen June 21, 2015 at 8:37 pm

          The 60 minutes segment on Pharma blackmailing cancer patients into paying their insane prices to stay alive was truely shocking. What really opened my eyes was the fact that they pay doctors a commision to prescribe their product.
          quote:
          according to an independent study, the single biggest source of income for private practice oncologists is the commission they make from cancer drugs.

          I did not know these kickbacks were happening. I wonder how much bayer / J&J paid my Dr. to ruin my life

        • Jason June 21, 2015 at 8:54 pm

          Linda – I hope you do too! Unfortunately Big Pharma is filthy rich and basically government-backed, so seemingly impervious to being brought under the microscope and more importantly stopped in any way :(

          SM – Very welcome. That is great you can exercise and not just a little! Whenever I was in real pain I always rested and never pushed for sure, sadly ever time I exercise even now I get pain in places that is not normal and definitely damage from the drug, but I rest and then go at it again (and it was getting less and less until I had relapse, now its on decline again but I am half expecting another minor relapse to happen especially once I play Soccer again)

          IIRC, Melanie is the one (or knows someone) who was symptom free for 6 years! Then, wham, after fairly intensive exercise a full blown relapse, and I think worse than original Flox. This is a scary story as 6 years is a long time and unfortunately as you know its not a rare story either.

        • Jason June 21, 2015 at 8:58 pm

          Glen – Indeed commissions are a HUGE problem and just one more reason Western Medicine is really losing its usefulness (for me its been entirely useless for 30 years and in fact has done me much much more harm than any tiny bits of good ever done)

        • Linda Livingston June 21, 2015 at 9:46 pm

          You just gave me an idea Jason—as did the first gentleman in the video. Long shot, but worth it. Usually civil cases are “easier” because there is a lower standard of proof required. But like he said in the film they are criminals. Next letter—to the Attorney General!

        • Jason June 21, 2015 at 9:18 pm

          Linda have you seen this video?

        • Linda Livingston June 21, 2015 at 9:36 pm

          Jason—no, I hadn’t seen that! Terrific piece, and I will use it in my future mailings to representatives, news shows, etc. Like the first injured guy said ” These people are criminals…they belong in prison for the rest of their lives.” Couldn’t agree more. Thanks for the post.

        • Glen June 22, 2015 at 8:31 am

          Jason,
          Ater reading your posts regarding fluoride, I started a little research…

          Ran across this interesting research paper from Mayo Sports Medicine Center

          Musculoskeletal Complications of Fluoroquinolones:
          Guidelines and Precautions for Usage in the
          Athletic Population

          http://www.levaquinadversesideeffect.com/wp-content/uploads/Documents/Hall-2011.pdf

          Excerpts:
          “Several possible mechanisms have been suggested for the toxic effects of fluoroquinolones on cartilage, including a deficiency of functionally available magnesium, inhibition of mitochondrial dehydrogenase and proteoglycan synthesis,
          altered DNA metabolism (through inhibition of DNA polymerase), tissue accumulation of fluoride, and increased ROS production in chondrocytes”

          It also has a section describing Evaluation and Treatments..

          “Similar pathoetiologic mechanisms may be responsible for fluoroquinolone-associated changes across all tissue types, although this supposition is not fully supported by the literature. Existing data regarding these mechanisms suggest that
          treatment with antioxidants (eg, vitamin E and coenzyme Q10) and/or magnesium may prevent or reduce these toxic effects.”

          And:
          “Although purported in the lay media [98], currently no evidence supports treatment of persistent symptoms with infusions of antioxidants such as glutathione.”

          Just thought I would pass this along as this particular paper is not listed in the Links and Resources section. Perhaps lisa could add this.

        • Linda Livingston June 22, 2015 at 9:01 am

          Good article, but I would have to disagree re the glutathione. Like magnesium, the FLQs consume glutathione which is necessary for healthy cell function. This is from Doctor Mark Hyman’s site: “I called it the mother of all antioxidants…The good news is that your body produces its own glutathione. The bad news is that toxins from poor diet, pollution, toxins, medications, stress, trauma, aging, infections and radiation all deplete your glutathione.
          This leaves you susceptible to unrestrained cell disintegration from oxidative stress, free radicals, infections and cancer. And your liver gets overloaded and damaged, making it unable to do its job of detoxification.” http://drhyman.com/blog/2010/05/12/what-is-glutathione-and-how-do-i-get-more-of-it/

        • Jason June 22, 2015 at 11:01 am

          Another interesting and in depth looking study, unfortunately they failed to really explore the Fluoride connection from what I could see from very quick read through, other than the one paragraph you pointed out which at least acknowledges it, but does nothing to expand on it like other sources and studies have. They also only looked at one of the many areas of damage, so a limited study for sure (and probably better that way since its specific, a study trying to look at everything would be unbelievably long and complex). They really focused on how MAG can be critical to a Floxed subject in regards to Musculoskeletal which concurs with other similar studies I have read and the fact that Fluoride robs the body of MAG (they did not mention the robbing part that I seen, but numerous other sources do).

          If you want to know more about the Fluoride connection, just search through my posts in the last 5 or 6 pages or so, I posted and linked a lot of good info, studies, etc showing the how and why it is so critical, in the opinion of experts, scientists, etc that I happen to agree with. (just click on older posts link and then search page for “jason” or “fluoride”). Unfortunately I have not amalgamated these altogether yet into one document, it is part of “my story” that I am writing and do hope to finish one day.

          Although Fluoride is only one aspect of the how and why this drug is so damaging, to me its one of the most important and overlooked aspects, again I have posted a ton of info about this on past pages that really shows the very obvious connection

          However as the study you linked somewhat points out, there are many other troubling aspects to the drug as well besides Fluorine/Fluoride, and I mean MANY, Gaba issues, Liver damage, DNA damage, Mitochondria damage, the list goes on and on. I am mostly convinced from my extensive research that “most” of the “symptoms” are from Fluorine poisoning, and “most” of the “damage” is from the rest of the drug. Where does that leave a Floxie? Well, you see my opinion on how I think it should be dealt with in my posts directly above. There are some other things I have mentioned in the past too in addition, like how to help heal Mitochondria damage, DNA damage, dealing with Gaba, Gut health, etc. Again no easy or standard route for most, everyone a little different, damaged a little differently, and a complex bunch of things going on inside of Floxed body :(

          (disclaimer, I am not a professional I am only sharing my opinion based on extensive research of studies, experts, user experiences, etc)

        • Linda Livingston June 22, 2015 at 1:58 pm

          I purchased some iodine today from my naturopath. After what you posted, and what else I have read, it just makes sense since I am careful about the water I am drinking, I should try to help eliminate what I already have, flouride/wise. Plus I have also read it helps with hypothyroidism, which I have, as well as immune function, among other things. As for its use in fluroquinolones, I believe it is what makes them so tenacious as far as anchoring themselves to dna, mitochondria, etc. (They were already dangerous enough when they were just “quinolones.” Then they had to go and make them even more toxic.)

        • Lisa Bloomquist July 4, 2015 at 6:44 am

          Last night I took an epsom salt and borax bath. I slept SO WELL last night. I’m not sure that there is a causal relationship – I don’t have horrible sleeping problems and sometimes I just have a random night of awesome sleep – but I wonder if the borax in the bath really helped. Just something to look into/try for those floxies who have sleep issues.

  18. Rosa Jiron June 21, 2015 at 8:15 am Reply

    I spend lot of money looking for help and is horrible I have neurologic problems I am desperate could anybody tell me something about legal help because somebody should be responsible for something like this.

  19. Linda Livingston June 21, 2015 at 9:33 am Reply

    Rosa, yes, someone—the doctor, the pharmaceutical company, etc SHOULD be responsible. It is criminal that we are left to find expensive remedies to pay for something that was the fault of someone else.

    I am a paralegal, so I cannot by law advise, but I will tell you what I have done so far (without much success I am afraid.) First, I looked into suing Bayer, that makes Cipro. I discovered I could not because I took a generic. (There is one state, I believe it is Alabama, but can’t recall, that actually allowed a plaintiff to sue the original mfr after having been given the generic. But unless you live in that state, the decision has no weight in other states.)

    I have been trying to get someone to handle a medical malpractice case, especially since I fell under one of the black box warnings—I was given it with prednisone. Now, while it is known that steroids exacerbate the FLQ the wording of the black box refers specifically to ruptured tendons, one of the few side effects I have not had. And this black box was not courtesy of BAyer, but rather a hard-won “victory” for a group called Public Citizen. (My contention though is that the doctor was willing to let me suffer a ruptured tendon, for a simple UTI, when there were far better antibiotics available.) I have been unable to find anyone to take my case and I have a couple theories on why. First, the doctor is with a large medical group and there are likely too many connections with law groups, their families, friends and this particular group. So then I tried finding an attorney not so close to home. Still no takers. I think part of the reason may be that my injuries are too “invisible” (can’t see suffocation, depression, pain, numbness) and I think another large reason is that “everyone (physicians) uses Cipro.” SO, I imagine their way of thinking is “if all physicians use cipro, then how is it negligent?”

    I have also sought legal counsel against the pharmacy that actually handed me both Cipro and Prednisone at the same time, with no warning regarding the interaction. No luck there either.

    So, does this mean I am giving up? Hell no.

    If you took the original ciprofloxacin or its counterpart for levaquin or another FLQ, you may be able to find a class action suit. I recall seeing one regarding nerve damage. If you think you have found an attorney, you might want to check them out with Martindale-Hubble or Avvo. Good luck! And keep us posted.

    • Glen June 21, 2015 at 11:38 am Reply

      I wish you luck in your legal persuits. It seems like the odds are stacked against patients due to the fact that lawyers typically require medical testimony that links your issues to FQ. You will not only be fighting big Pharms, but also the FDA, and your own doctor that prescribed the poison (ironically protected by Dr/ patient priviledge).
      What I think would be much more effective is to go to Healthgrades.com or Vitals.com, look up the Dr. that precribed the junk, or the Dr. that says “it’s all in your head”, or any other Dr. that you visit that does not have a knowledge, or desire to treat these issues, and write a review of your bad experience(s). If enough of us do this then maybe. (just maybe) that particular Dr. will think twice about prescribing this junk to your (or my) relative for minor health issues. The are only three thing that will change physicians behaviour…

      1. Law suits (again good luck).
      2. Insurance companies… this may be an avenue if they realize the $$$ they are spending on the treating floxed patients. The cost of treating chronic FQ issues vs. cost of the “cheap” pills.
      3. Bad publicity, and public shaming… local newscasts, online reviews, video taping your
      sessions and posting online (they REALLY hate the idea of patients documented their own sessions).

      Apparently the FDA will take years to change the ‘living’ warning labels, if ever, and even then that will not stop the Dr.s from injuring future patients. The current black box warning haven’t stopped this epidemic of malpractice, so I don’t think stronger warnings will protect future floxings.
      I am tired of being abused by the medical community, and will be fighting back a bit more agressively,locally, and directly.

      • Linda Livingston June 21, 2015 at 12:23 pm Reply

        Interesting you should mention insurance companies, because I did just that. I wrote a letter outlining how they could save millions, using myself as an example of just ONE of thousands—I saw 12 doctors (9 specialists) and had countless blood tests and ultrasounds. That’s thousands of dollars for just one patient.

        As for the FDA—they are in bed with big pharma. It took a hard fought legal battle by Public Citizen to get them to even put a black box warning on. I agree with you regarding warnings though—if the physicians don’t read them what is the point?

        I have posted bad reviews of the doctors, but honestly I am not sure how valid those sites are. I know a very good doc that got bad reviews, and a couple horrible ones that have great reviews. As for doctor/patient privilege, it is really there to protect the patient.

        Glad to hear you are fighting aggressively, as am I. I have contacted members of Congress as well, and will not give up the fight.

        • Glen June 21, 2015 at 12:53 pm

          Do not underestimate the power of Vitals / Healthgrades. The point is not really whether the overall ratings on docs are accurate, but rather to specifically warn other
          potential patients about your own personal bad experience with that doctor.
          If a doctor prescribes FQ’s for minor issues without knowing or warning the patient of the potential of very serious consequences, then that absolutely needs to be called out on it. Think of it as a public service by educating both the doctor, and future patients of the dangers of FQ abuse. Believe me, Dr’s do read their own reviews, and if only one Dr. decides to actually read the warning before prescribing, or maybe a patient that has a minor sinus issue looking for a Dr. will read the review, and educate themselves about floxing and avoid all the pain that we are experiencing. It will be one small success. This war can be won on small battle at a time. It just pisses me off that the Dr. that prescribed me levaquin for a sinus issue a couple years ago is probably still injuring other patients today without any knowledge of the consequences, or worse yet, knowing the consequences, and not informing their patients appropriatly (1st Do no Harm!). If store down the street was selling tainted baby formula, then they would deserve to be called out on it, so I see no difference with Dr’s prescribing FQ.

          Last year, Intuit tried to force an ugrade to turbotax using bait and switch tactics. After 2 weeks of nasty reviews on amazon, they very abruptly changed course, and release new version of the software. Even though they had a virtual monopoly on tax software, the power of consumer reviews force a change that no lawyer, or gov’t agency could have.

  20. Melanie Kemp June 22, 2015 at 11:57 am Reply

    Hi everyone. Havn’t been on here in awhile. Things have gotten much better. I’m back to work. Not symptom free but very functional after being bedridden and suicidal.. At the moment I’m just left with a little head pressure.. it was terrible at the beginning of my relapse. Tinnitus but not as loud and I get some reprieve at times. Tingling..mosly left sided leg and arm but it can be wherever.. but predominantly left side…comes and goes… have some very normal days. Food sensitivity is nowhere near as bad although I still stick with organic animal products and not to much in the way of sweets… All in all much much better so I’m sure i’ll reach 100% as I did before the relapse. Hope everyone is doing well.

    • SM June 22, 2015 at 12:58 pm Reply

      Good for you, Melanie. Very happy for you. Every story of getting better is one that I not only feel good about for the actual person, but also for al floxies because these stories give us all a little more hope. You didn’t do anything special, right? Just seems like your body is healing?

      • Heather June 22, 2015 at 7:38 pm Reply

        Hi guys,

        Interesting about the Iodine since my last blood work I was low in Iodine. My naturopath said to buy some iodized salt since I had been using sea salt which had none. I still have to go get some.

        • SM June 22, 2015 at 8:58 pm

          Heather- What blood test is that called? I’ve had thyroid tests- all normal.

    • Rene June 24, 2015 at 11:25 am Reply

      That is wonderful wonderful news!!! I am so very happy for your good news. Yes, you will continue to improve, and God Bless you for persevering through all that suffering to be where you are now. I am thrilled to hear that you are back working, and well just a answered prayer!!

      • Mark June 24, 2015 at 11:44 am Reply

        Rene,

        Do you think that phospholipids derived from soy lecithin are ok to take for me? They’re in the liposomal Glutathione and Vitamin C from Livon Labs.

        Mark

        • Rene June 24, 2015 at 1:43 pm

          Hi Mark,
          I understand your concern as I have the same. Soy & Corn both being a GMO product now world wide except possibly Mexico for Corn?

          I cant answer with certainty…..but I follow a simple method of trying out a new supplement. I start at 1/2 or 1/4 the dosage for a week if no negative effects than I titrated up to full dose. It may be perfectly fine for you, or if you feel weird or have negative response than ditch it.

          I take a phosphatidylserine complex supplement and it is derived from soy. That is the only place I allow it in my supplements or food.

          The other option for glutathione is to take the “precursor” like NAC – N- Acetyl Cysteine.

          I also use the Lifewave patch – (Y-age Glutathione) non trandermal, works on energetics of meridian points on the body.

          I hope this hasn’t confused you or added more information than you care for….all these little details can be tedious at times. and others can be a game changer for improvements.

          God Bless,
          Tahnee

        • Mark June 24, 2015 at 2:45 pm

          No Rene not too much info at all. Thing is I’ve been into healthy food, hard training and supplements all my life, it’s just the Cipro thing that changed me into being very suspicious and careful when selecting new supplements to try out. :)

          So you’re taking the Livon labs supp as well without reacting to it? Sounds great. Did it help you at all or not? How are you btw? I can’t remember you writing about your side effects I would be very interested to know if you recovered or not.
          Has been 13 months for me now and I’m still not recovering. My main issue is the tendon pain all over as well as starting back and neck pain. :/

          Mark

        • Rene June 25, 2015 at 4:55 pm

          Hi Mark,
          Well forgive any repetitiveness on my part: The Lipospheric Vitamin C is noticeable for when I am feeling run down….so immune system. Vitamin C IV drips helped me a lot with inflammation, oxidative stress…..and pain. My right leg was severely injured by Cipro….and i was unable to stand at the sink to brush teeth or do dishes…walk etc. So I did do plenty of time with knee pads crawling on the floor in my apt, and crutches, and wheelchair. The first 2.5 years approximately….. It took a very very long time for me to get where I am now (4th year) No wheel chair, walking aids, no more cane. I can exercise, but with limitations. I can walk all day pretty much and am very agile. I am a petite, 5.6 115 lb woman. Still applying the MAG OIL nightly….The Lifewave patch – Y-age Glutathione and other supplements: Zinc Picolinate – Phosphatidylserine – Vitamin D3 – 5 HTP – Potassium – Omega 3’s Fish oil, no packaged foods other than Sunflower seed, Sardines, Real Olive oil (California) All organic food. No Grains. None. No dairy. Butter, eggs, fish, chicken yes. Nutri-Bullit for green drinks.

          Prior to Cipro/FDA….I did suffer with Lyme Disease but I crawled out of that valley too! To have a pretty good quality of Life. Not ideal, but I could do the important things, and enjoy being moderately active except when in an episode of Lyme Flares. I always took excellent care of myself….and appeared to others healthy, fit, and energetic. This was a blessing becuase I could keep my struggles with Lyme private and my identity as a able bodied person. The were some very tough years with Lyme that I will not go into, but lets just say I earned my stripes and experience so that when Cipro/FDA sucker punched me after (1) tablet and then disabled me after the 3rd and final tablet, not only was I amazed and horrified at the severity of it…..but had a profound understanding that intense suffering prolonged suffering, is Not the final say on whether a person can recover and heal. I spent years and years reclaiming my health, never ever giving up and obtaining what I trusted in my heart to be true. Healing. There was no way I was going to accept “this” for the rest of my days. I often thought of our VETS. I told myself it they can do it, so I can I…period. I gave myself over to God as I learned to do many years ago and said looks like we are going to be busy. I am doing this WITH You…..and anyone who wants to join welcome….the naysayers I forgive and keep my sights on HIM. I give all the glory to God for every blessing I have received, all I did was stay faithful and tons of research.

          The back and neck pain, was not part of my problems but shoulders and arms, wrists, and hands and fingers yes. Legs, hips yes. Left side of face yes. Ask Lisa for my email and i will answer some things in greater detail.

        • Mark June 26, 2015 at 1:39 am

          Hi Rene,

          Thanks for all the infos. Wow took yiu a very long time I’m only in for 13 months now and already had enough of this.

          Btw since you’re taking Livon Labs Lipo Vit C as well did you notice the calcium disodium edta in it? I read up on it and it’s not that healthy. :/
          http://www.livestrong.com/article/220542-dangers-of-calcium-disodium-edta/#page=1

          http://www.shape.com/healthy-eating/diet-tips/7-ingredients-are-robbing-you-nutrients/slide/4

          Sure, for a healthy person a little bit won’t do anything but since we’re all f’ed up by Cipro I’m not so sure if the soy lecithin, alcohol calcium disodium edta combo will be fine for me in the long run.
          I took 1/2 a pack today to try anyways. So far only difference I notice is increased tinnitus and feeling a little dizzy which I attribute to being nervous prior to taking it.

          Mark

        • Rene June 26, 2015 at 10:17 pm

          Mark,
          That dizziness may be due to the Lipo which is the phosphatidylserine…..I say this because you may have a congested liver/Gall bladder….Phosphatidylserine and other fats are excellent for the membrane of our cells. Keeps them fluid so that they can absorb nutrients and detox waste. Nerve Cells have a phospholipid cell membrane. The cell membrane mus be fluid not rigid. They need to signal properly. Think of a rigid membrane vs a rigid membrane….

          You can purchase an excellent “Phosphatidyl Serine Complex” from “Holistic Heal”. It is a bit pricy till you understand that it has several lipids. You get 60 soft gels which is about 2 months supply or longer. I suggest you take one soft gel and squeeze out 1/4 of it onto your finger. Lick it off, do that as your dose daily for 3-5 days….if all is well use 1/2 of soft gel…3-5 days…if all is well add another 1/4. If at any point you feel wonky….than decrease.

          This Cipro…Fluoroquinolone injuries is also a CNS injury so many of the nutrients that I have been using are with that in mind as well as keeping things very conservative and specific. I dont want to take anything that doesn’t count in a meaningful way. That does not mean that suffering/are instantly gone. It does mean that you are providing the best possible chance of supporting the terrain/ environment for cells to function and converse optimally.

          I do not take it Lipo Spheric Vitamin C daily…only when suspect a cold or flu.

          I will look into your question though. It is certainly valid. Will take some time so maybe a week to give an opinion.

        • Rene June 26, 2015 at 10:26 pm

          Hey Mark,
          I do know a little bit about EDTA….it can be an issue for some but usually in higher doses such as for chelating heavy metals…however due to the sensitivities the floxed folk have it is absolutely within reason to question whether you can tolerate it.

          I don’t like that you felt dizzy from a half pack. Not that you are in danger, but dosage is a factor as is the substance itself. Try again, half pack and if this repeats itself than as to whether it is the EDTA or the other ingredients is hard to determine.

          You may be dose sensitive to the phosphatidylserine too, or the EDTA.
          You can put it aside for now and revisit it at a later date.

          God Bless,
          Rene

        • Rene June 30, 2015 at 1:59 pm

          Hi Mark,
          I wrote a post to answer in greater detail your question but it has disappeared? Anyhow, the “edta” yes could be an issue for some individuals…..but so can dosage of a particular substance. The Phosphatidylseriene is of great value for the cell membrane keeping it fluid and not rigid, which is important for absorption, detox and signaling.

          There is an excellent phospholipid supplement that I been using for a some years now purchased from Holistic Heal on line. Phosphatyidyl Serine complex. Pricy but worth it because it has more than just one phosphalipid and so a great bargain in one. You may want to start with just squeezing out 1/2 of the soft gel…..for a few days to see how you respond. All good? Then add 1/4 more for a few days. if you feel wonky than decrease from where you are by a 1/4. I use one a day, but tolerate (2). At first I could only manage 1. The increase of tolerance is a good sign.

        • Rene June 24, 2015 at 1:45 pm

          Hey Mark, oops….I take the vitamin C you take too. so that would be the other source of soy. So it hasn’t been an issue for me.

    • Mark June 24, 2015 at 12:01 pm Reply

      Good to hear!

      What do you think helped you the most?

      Mark

  21. SM June 23, 2015 at 12:00 am Reply

    I avoided alcohol for the most part during year one. Not any more. I have less than I used to but I do have a few beers here and there with friends. Tonight was one of those nights. What surprises me is that for all the floxies who talk about alcohol as if it makes their bodies react negatively, my body is the opposite. After 2-3 drinks, I feel so much better. Why? Does the alcohol just numb the pain? Or is it more about vasodilation? My feet are toasty rather than cold and achy. Thoughts? I could just have 2 beers for breakfast every day. Then 2 more at lunch. Then 2 more at dinner. :)

    • Heather June 23, 2015 at 6:10 am Reply

      It says Iodine serum/plasma on the results. Normal is between 52-109 mcg/l, mine is at 45 when it was tested 2 months ago. Completely forgot to try to fix it until these recent posts.

      • SM June 23, 2015 at 12:24 pm Reply

        Thanks, Heather. I’ll ask my
        Doctor.

    • Jason June 23, 2015 at 6:55 am Reply

      Isn’t that something how many Floxies report tons of inflammation and pain (this was me), so cold water/ice can help a lot to shut it off (a strategy talked about inThe Fluoroquinolone Toxicity Solution ebook) and yet others report already being cold, achy and even dried out. (we did discuss this somewhat in recent pages). Really shows how different people can have different reactions and symptoms.

      It would seem, that anyone cold and achy is indeed having trouble with circulation, so your theory on vasodilation is probably worth exploring. There are many many natural things you can do to improve circulation, and maybe much to your dismay, are healthier than beer :)

      • Jason June 23, 2015 at 7:10 am Reply

        A few ideas here: http://www.earthclinic.com/cures/circulation.html

        Of course sitting too much, or any lack of movement really is going to be negative, and exercise helps a lot to counter this.

        • Jason June 23, 2015 at 7:16 am

          http://www.diabetesselfmanagement.com/managing-diabetes/complications-prevention/improving-blood-flow-to-the-feet/

          Here is a very interesting page, talks about improving Blood flow to the feet with a couple different techniques and Diabetic Peripheral Neuropathy (PN caused by complication of Diabetes, so the cause is different but the condition is the same, nerve damage and PN possibly also combined with poor circulation)

        • Jason June 23, 2015 at 7:18 am

          Here is just one more resource, https://www.organicnutrition.co.uk/articles/circulation.htm

          3 pages with a lot of good info on circulation, how to improve it, etc They are selling some of the supplements but nevermind that, the info is good

        • SM June 23, 2015 at 12:27 pm

          There’s no question about movement. I’m a teacher and when I’m working my feet hurt from being on them. When I’m off work and sitting more, they’re cold and achy. Bit of a dilemma. :)

      • SM June 23, 2015 at 12:31 pm Reply

        Thanks for the articles. Read some medical studies this AM on Pub Med regarding garlic tablets and calf blood flow. Quite a significant impact actually. Going to try. If not, there’s always beer.

        • Jason June 24, 2015 at 10:42 am

          SM – you mentioned garlic, and I just ran across this article in doing some of my other research:

          http://doctorvolpe.com/category/neuropathy/

          Allithiamine found to reverse neuropathy

          Allithiamine is a fat-soluble form of vitamin B-1. Although vitamin B-1 (thiamin) is most commonly found in its water-soluble form, allithiamine is also a naturally occurring form of this vitamin and is found in many foods, including garlic.

          Since it is fat-soluble, allithiamine has the advantage of being excreted at a much slower rate than the common form of thiamin. In addition, while thiamin in any form is associated with health of the nervous system, the fat-soluble form is far more effective in promoting recovery of a damaged nervous system.

          An extreme form of chronic vitamin B-1 deficiency is seen in alcoholics. Alcohol is metabolized like a carbohydrate but provides no nutrients at all and thus robs the body of many vitamins, especially thiamin. This extreme deficiency can lead to a form of dementia known as Wernicke-Korsakoff psychosis that is treated with daily vitamin B-1 injections.

          —-

          Please see link for full article

        • Lisa Bloomquist June 24, 2015 at 8:07 pm

          Jason and SM, I recommend reading Dr. Derrick Lonsdale’s articles about thiamin – http://www.hormonesmatter.com/author/derrick-lonsdale/ He’s brilliant and has been helpful to several floxies.

          In one of his comments he said:

          “Japanese investigators discovered that a form of thiamine occurred in garlic bulbs ONLY when the bulb was cut or crushed. They called it allithiamine because it occurs in a number of plants of the allium family.It is a disulfide derivative of thiamine that they found to have a greater biologic effect than the original thiamine. Years of research followed and the most modern and clearly the most effective molecule is thiamine tetrahydrofurfuryl disulfide (TTFD). This is the best synthetic form of allithiamine and research in Belgium (Lucien Bettendorff) has shown that it crosses the blood brain barrier(BBB) and enters the brain. Benfotiamine is NOT a disulfide and does NOT cross the BBB. TTFD is made in Japan by Takeda Chemical Industries in Osaka and is a prescription item as Alinamin in Japan. I have had an Independent Investigator Licence (IND) from the FDA since 1973. I have sent regular reports to the FDA that I have never seen toxicity and that many different diseases respond to its use because it BOOSTS CELLULAR ENERGY, thus helping self healing that is the normal bodily response to injury and disease. FDA rules allow it to be imported by individuals FOR PERSONAL USE. It can be obtained on the Internet from Europe and Mexico as Alinamin, or Fursultiamine. For more information I suggest going to my blog, “Oxygen, the Spark of Life” and read the posts about this remarkable substance.”

        • Jason June 25, 2015 at 5:55 am

          Lisa thanks for sharing all this, guy is undoubtedly an expert on Vit B1 to say the least, and really stresses its importance in the Brain which really has me thinking. Very interesting excerpts about how allithiamine only comes from crushed garlic too! Lots of other great info in the other articles too.

    • tricia June 24, 2015 at 4:41 pm Reply

      SM
      I totally agree! The first few months I avoided all alcohol, even wine w dinner. Now, however, I do drink fairly socially and it helps in all aspects, given I don’t go overboard and drink in moderation!! It definitely seems to help w pain, it calms my anxiety, and also makes me feel more ” normal” .
      Perhaps alcohol will delay my recovery, or perhaps it will have no impact. But my goodness….we as floxies have suffered so much!! I say, whatever brings any relief from pain and suffering…..than by all means do it!!!

      • Linda Livingston June 24, 2015 at 5:05 pm Reply

        SM and Tricia—So nice to hear about your experience with liquor! I haven’t had any alcohol in almost 5 months, and I miss my evening wine with dinner—and occasional scotch! I think it is likely not in my best interest now, until I get better. But I sure look forward to it. I’ll drink to that!

        • SM June 24, 2015 at 7:11 pm

          Tricia and Linda- I was very cautious in the beginning because I was afraid to damage my nerves. I no longer believe that’s an issue as long as it’s a reasonable amount. I have found that hangovers are even worse as a floxie. Maybe that’s because the old me would have awoken and taken a couple of Advils and gone back to bed! The new me drinks water and curses to himself for overdoing it.

          And I think the point of feeling normal is super important. When one cuts out alcohol, severely limits foods, and can’t eat at restaurants, it impacts one’s social life. When you
          combine that with the pain and symptoms, it’s a whole layer of crap on top of what we are dealing with. I’ve even felt that way about clothes. Ive had difficulty wearing socks and many shoes.

          The pain by itself is enough. Add in the other stuff and it just adds to what we face.

        • Linda Livingston June 24, 2015 at 8:57 pm

          I could ‘t agree more. Unfortunately, in addition to the breathing problems I had hyperosmia–exaggerated sense of smell, and I can’t begin to tell you how hideous that was. IF it had not gone away, and thankfully it mostly has, it would have been a deal-breaker for me. Everything was asphyxiating, and combined with the breathing problems, I felt like I was choking from the least scent. And a restaurant—forget it! In fact, today, for the first day in almost five months, I actually went into a restaurant. I had been a virtual shut-in and like you said, it was just one more horrible layer to deal with. I also, in addition to other professions, am a professional stage actor. It has been heartbreaking, not just not being able to perform, but not being able to enter a theatre. I think that would still be too much for me scent-wise at this point.

          It also pissed me off that I had to be so careful about what I ate. My friend found a place with organic food, and still I was mentally crossing things off that normally I wouldn’t have. But yeah—I sure have missed the social thing.

  22. Jason June 23, 2015 at 7:40 am Reply

    This post is “mostly” geared to Women here that are low in Iodine and/or thinking of taking Iodine, as there is some good info on Cysts, estrogen and other stuff like how critical diet is for anyone polycystic which is all too common. It also mentions the importance of tyrosine for Iodine intake, I have not verified that but don’t doubt its validity considering the source.

    http://www.curezone.org/forums/fm.asp?i=1952171

    This is someone at Curezone quoting Ted from Earth Clinic, Ted is the most knowledgeable person at Earth Clinic.

    Note Ted is NOT talking about Iodine in regards to a Floxed person, he is only talking about people with other ailments supplementing with Iodine in general. He also mentions how Chlorine another Halide also competes with Iodine something I forgot to mention in the discussion further up, and everyone’s water has this (He also mentions Bromine is not just in Bread but potentially in any products with white Flour).

    My wife’s Naturalpath discussed with her a lot of the same information as she has cyst issues in Breasts and Ovaries so I thought this would be good timely info to share.

    • Heather June 23, 2015 at 5:18 pm Reply

      Hum I’m low in Iodine and have cysts. I hate the chlorine in water, I am going to put in reverse osmosis this year. Going back to the post about being cold, achy and dry and also having pain inflammation and using ice I had both! I couldn’t regulate temperature the first year, was so dried out, dry eyes and everything else but I also iced like crazy, 10 ice packs at a time on all joints like 3 times a day for months in the beginning so I’m pretty sure you can have circulation, joint issues,inflammation, and a lot of other systems affected at once unfortunately.

      • Jason June 23, 2015 at 6:02 pm Reply

        Good god, I wondered what a poor person would do if they were both cold and achy plus full of inflammation and pain, talk about a roller coaster, sorry to hear you’ve gone through this.

  23. SM June 25, 2015 at 1:44 pm Reply

    I’m pretty much doing the gym on a daily basis now, maybe 5-6 days per week. The workouts are short, maybe 20-25 minutes. I do weights 2 times per week- I want to give my body lots of rest. I do biking intervals the other days. I’m also doing lots of foam rolling (and have been for 2 months). This may all hurt me or help me or not make any difference. But screw it- I’ve been patient for a long time. And I feel almost normal when I’m working out. It’s more than mental too. My feet are calm when I’m working out. Must be the blood flow.

    • J June 25, 2015 at 3:05 pm Reply

      SM- you and I both seem to have nerve issues- mine is only symptom left after seriously too many things to count . I am vratef for that but would love this to resolve :) I have been exercising for a while now (28 months out,say forties and athletic prior). Doesn’t seem to hurt . Yesterday I knew boarded on lake and it was awesome.thought I would tear something for sure but was no worse the next day. I have recently been to a dr. Who wants to try the “rebuilder” as well as vibration and infrared light therapy among some others things . I am wondering g if you or anyone else has tried these types of therapies aimed at “regular” neuropathy (whatever that means! ) and if so what was success rate. I did lots of Iv’s at about month 6 when I seemed to be getting worse not better and I do think they helped with the other symptoms – just not the nerve prickling tingling burning of twitching in my legs- so frustrating ! I too have decided life just go on which is not acceptance but rather I need to live again-go out to dinner , sports, activities with my kids, work etc. and yes- beer or glass of wine is on that list !! I have corresponded with Heather (thx Heather!) and her nerve pain seems so much better – is it just time???? I hate to keep investing in these therapies if they don’t work (I am already on a nutrition program with supplements so that part is covered). But I hate to think I am missing something. I spoke to the rebuilder company and they say it’s for any type of nerve pain so maybe worth a shot. Not much to lose I suppose ??Thx!

      • J June 25, 2015 at 5:11 pm Reply

        Meant to say 18 months out !

        • SM June 25, 2015 at 6:53 pm

          J- Yes, my issues are mostly nerve-related and it’s settled in my feet mostly. I wake up with a little irritation in my hands but I don’t notice them throughout the day. My legs are okay, too. On the positive, my feet used to be crazy sensitive to touch. For the first 6 months, I had to sleep with my feet out of the covers because I couldn’t handle even sheets touching them. Socks were impossible- even walking on carpet was unpleasant. There was never numbness though. I am now wearing socks daily and they don’t seem to bother me. Sheets are fine too. My legs used to have some nerve stuff too- big fasciculations in my quads and calves, sensitivity to fabric, tingling. But my legs are mostly normal now.

          I haven’t tried the Rebuilder or light therapy. I have looked into both though. I do know of floxies who have done the Rebuilder or TENS units and have done well. I did a TENS unit at PT for a while and it didn’t help me in any way. But I still have considered it. The nerve stuff takes time- a lot usually. And I’m not convinced that we even have nerve damage. These sensations are possible without actual damage to nerves. I know of floxies who had even the skin punch biopsy done and it came back as normal- this despite years of nerve-related pain! I also know of floxies who tested positive for neuropathy with the skin punch biopsy and recovered.

          I wish I had the answer. I say you do the Rebuilder- if it works, any of us would gladly spend the money!

          Something that still confuses me about this is the supplementation part. I had extensive blood work done that measured tons of stuff at the cellular level. And other than B12, all of the other minerals, vitamins, hormones, and antioxidants normally associated with nerve stuff is normal. ALA, glutathione, all other Bs are all normal. And even my B12 was supposedly not low enough to cause the nerve issues. My guess on that is that my B12 was low because my body has been using it to repair. Anyway, how do I supplement with all of these things that are supposed to be good for nerves when they are all normal?! Maybe the fact that they are normal is irrelevant…

          Time, J. I know lots of people whose nerves recovered at 24-48 months. It’s awful but there is hope.

        • Jason June 25, 2015 at 8:38 pm

          SM I was going to mention something about this before. If I went and got tested for MAG and it said I was sufficient (it did actually just 2 weeks ago), there is NO way I would stop taking MAG, and same goes for any of the supplements that help me. If I was deficient, then I would take more for sure, and if I was very high in something I might only take a little or possibly none if it was not that important. However, just being sufficient in something, to me, is not a reason to not take it at all (and we have to remember the accuracy of some of these tests is highly variable, etc too).

          I think the main thing here to remember is just because someone is sufficient in something it doesn’t change the fact that taking some of it might help them with an issue they are having, and if its natural and something the body uses anyway chances are its not going to hurt either especially if you keep it inside the recommended range.

          Just my opinion hope it helps.

        • Rene June 25, 2015 at 9:30 pm

          Hi Jason, just want to add to your point…..
          the ranges that are considered “normal” are often misleading in that they are not necessarily optimal. Average may in fact be useless, for some individuals. Ratio are important too…and the RDA for many nutrients are no longer valid.

          Urine Analysis for Amino Acids, minerals, and trace minerals, Heavy Metals can give great insight where blood serum tests fall short or only give a look at things from the one perspective. Urine Analysis is showing Functional ranges which may look entirely different than Urine. The diagnostic tools are just that…..you need different tools to see differcent aspects of how things really are. This area of testing with just standard CBC blood serum test is only showing so much from a particular perspective.

          The care I received using Bio-identicals opened this understanding…..there is no one size fits all. The ranges leave a whole host of people out in the cold….and stndard medical care is all about drugs…..not the biochemicals and nutrients that are the raw material that are driving all these processes eery second of ones life. Having said that, more is not better necessarily……but with such nutrient poor food and soil that it is grown from it is quite a stretch to think that all these nutrients are readily supplied and able to handle the toxic and highly stressed lives of today.

      • Jason June 26, 2015 at 9:43 am Reply

        Rene good points thanks for adding those. I plan on making a couple of very detailed future posts on Aminos and Metals/Minerals in particular as they are extremely vital to every living person’s health, not just a Floxie.

        As for Metals and Minerals, the best and most economical test I have found is this one: http://www.holisticheal.com/hair-elements-test-kit.html

        This one test will show you if you are toxic in Mercury, Lead, Aluminum etc most of the important ones, then it also tests you for some of the most important vital minerals as well like MAG, Moly, Boron, Iodine, Potassium, Selenium etc. All for $85.

        • Rene June 26, 2015 at 9:21 pm

          yes that is an excellent resource and test choice….best if used along with the urine analysis as well.

  24. Rene June 25, 2015 at 9:33 pm Reply

    I made quite a few typos….sorry not wearing my glasses and sleepy to boot. Lastly, genetics play a substantial role and therefore we see the details do matter.

    • SM June 26, 2015 at 12:07 am Reply

      Thanks, Jason and Rene. I appreciate those answers. It’s something I’ve been wondering about for a quite a while now. And your answers make sense. All of this stuff is so overwhelming. I feel like I could be taking 15 supplements at once!

      • Jason June 26, 2015 at 8:27 am Reply

        Unfortunately, my belief is the average Floxed person needs at least that many, and in some cases probably more :( Of course this is somewhat variable on each individual, as in how long ago they were floxed, exactly what symptoms they are having etc but when you add up all the damage and symptoms that this drug does I really don’t see any way around it if someone wants to truly protect themselves from as much damage as possible, and in turn also shorten their journey as much as possible.

        To me, this drug is one of the worst possible poisons a person can take, it might even be worse than Chemo & Radiation (I know someone who just went through a ton of this and she recovered greatly in less than a year). Just Fluoride alone, is more toxic than lead and just under arsenic on the scale of nasty, and lead and arsenic are extremely toxic poisons. Then add to it the rest of the DNA and Mitochondria damaging drug (critical things to Human health) and its no surprise at all what people are going through here and for how long. We are talking extreme dangers to Human Health, which to me requires extreme measures to try and counteract as much as possible. So as ridiculous as 15 supplements sound (my wife thought I was cuckoo and she didn’t know the full extent…) unfortunately its not nearly as ridiculous as the amount of damage someone will likely suffer by taking Cipro and then not trying to counter it after. For me this perspective was key

        • SM June 26, 2015 at 9:49 am

          Jason- You may absolutely be right on your approach to supplements. I will also say that many, many people recover without extensive supplements. Some even recover without ever knowing what was wrong and without implementing a recovery plan.
          Personally, I am very cautious about megadoses. This comes from The Flox Report, My Quin Story, as well as many experienced floxies. I can see the value in a multivitamin. Although I’m afraid to take 30 things at once- if I react, how will I know the source? There was a relapse on the FB group a year ago and the only thing the guy did was a vitamin E supplement recommended by his doctor. Scary!
          Maybe my opinion will change as time passes- it already has. Today I’m doing 25 grams of C in IV form. But overall I’m still conservative. Taking 500 mg of mag, 5000 IU of D, 3000 mcg of B12, and a B complex isn’t megadosing in my mind. Even my doctor knows I’m taking these and doesn’t oppose. (Although I really don’t give a damn what he thinks!).
          I started out this journey a little scared of supplements. One reason why is how I reacted to B12 initially and how that freaked me out. I’m now taking more and more as time goes on. I think it’s important for floxies to listen to their bodies and pay attention as they supplement. Many people benefit from them, but many have negative reactions to one or more.

        • Linda Livingston June 26, 2015 at 1:16 pm

          Agreed Jason. And I learned this morning that in addition to all the other awful things that fluoride does, it keeps people docile. (Hitler used it for that purpose.) The pairing of fluoride with a quinolone is just criminal. They were bad enough BEFORE the fluoride was added.

        • Rene June 26, 2015 at 9:53 pm

          I take approximately 15 individual supplements..and they are very well thought out and specific “supports” being nutrients it is Not the same thing as taking the half a dozen or more medications. These supports are not taken in mega doses either. The high dosages are for Intravenous Nutrient therapy….such as Vitamin C which has tons of research world wide about the benefits of using it at therapeutic levels for a period of time.

          These are not extreme measures. Extreme is when you are using methods with high risk or doing harm that is dangerous. Cipro and the rest of those poisons are high high risk. The view that using nutrient supports is somehow extreme is not in fact true, though standard medicine practices respond with such disgust, and arrogance. They are beholden to the shock and awe of pharmaceuticals….but as we all have experienced how absurd this propaganda is. Their method of care is denying the harm done, when one’s body is left ravaged by the very thing that was “supposed to bring health & wellness”. !!! Bayer & the Nazi doctors/scientists can swim in that dogma til the end of time.

          NUTRIENTS – that drive the ENZYMES and Conversions -Conversation of all these wonderful processes are how we are designed to thrive, repair, heal. This is the one area that all doctors are asked to forget about when they finish their schooling…..and are encouraged to dive deep into the pool of DRUG CULTURE as the great OZ and ruler of Life itself. Take this little pill or pills for the rest of your days…..it really is a science fiction nightmare of modern times.

          The FDA – The Funeral Directors of America and the Drug companies are the grim reaper. Now we have these billionaires like Bill Gates deciding, influencing the global decisions about vaccines and GMO’s in Africa…….I rebuke all of that nonsense, posturing like some savior of the poor. Obscene. Thus is the world. But we are so blessed to see through the propaganda albeit through our own suffering. That too provides a steely sword of truth to cut through the darkness and share what we know, like good people let the story be told and passed along. The knowledge and understanding is of value for our children, for our neighbors for the people.

          Nutrient supports are just that. “Support” for the body to heal. Plants, herbs, minerals, enzymes, trace minerals, amino acids, water, fats, antioxidants, all working together. Not division, not suppression, not toxic. Not crazy, fanatical nonsense of made up nonsense, and hidden dangers of horror. Amen.

        • Linda Livingston June 27, 2015 at 10:09 am

          “Funeral Directors of America” good one

        • Jason June 26, 2015 at 11:58 pm

          Let me clarify a couple of points just to make sure the ideas I wanted to convey came through correctly.

          When I say extreme measures, I do mean taking 15 different supplements. I think just the very idea of taking 15 different ones is ridiculous and therefore to me extreme, and would really not ever be needed by the average person (thus again making it extreme) the trouble here is no one is an average person anymore, we have been severely poisoned.

          As Rene points out, extreme does not mean massive doses however, and are probably not needed by anyone in most cases. Very big doses of Vitamin C can be helpful for at least a few things, and probably wouldn’t hurt here either, the other one where larger than usual dose could come into play here would be MAG. As Rene also points out, taking natural things the body needs anyway is, looked at in another light, also far from extreme. (and like she says also not like taking scripts, natural things almost never negatively interact with each other. I’ve tried over a hundred different supplements over the years and the only reaction I have gotten is from Glutamate after being Floxed since my gabba receptors are now screwed up).

          Look at it this way, in the ideal World, we would be living in a non-toxic environment, air, food and water would be nourishing and full of nutrients, and people would eat each day the proper amounts of veggies, fruits, meats etc giving their bodies the daily required amounts of vitamins, minerals, aminos, etc needed just to function properly under NORMAL daily circumstances. Now look at the reality, Chem Trails, Nutrient depleted and toxic soils, heavily contaminated waters, chemical based foods, GMO poisoned foods, air laced with garbage, and on top of all this, NO ONE, and I mean no one (that I have ever met and that lots of people) eats the right amounts of the right foods that the body would need in the ideal World, nevermind the toxic World, and the food is mostly toxic on top of that. I was never ever a pill person for many years, but once I fully accepted the reality that changed. Now add to this, that people here have been severely and acutely poisoned and all of a sudden 15 supplements doesn’t sound unreasonable anymore…

          —-

          You are correct in your listening to the body methodology, this is very important indeed, sometimes people can even have an allergy to certain things, at least 2 people here had very bad reactions to Epson Salts. Yes if you start off taking a bunch of things at once as well, if you have an issue you won’t know which one brought it on. There are other considerations too, Debs has brought up before that some supplements are hard on kidneys, and/or liver and those too are under attack here, so getting those functions tested would be the prudent thing to do first, if someone wants to wait to do it (I know I didn’t, I would rather of taken that risk than wait for tests and leave my body unprotected while Cipro ravaged it)

          There is no question people can and will heal without supplements at all, but at what cost? The body will slowly detox the junk out, slowly repair itself, slowly try to replace depleted stores of critical nutrients, Vitamins and Minerals, etc but remember that the body is being robbed here big time while also having the shit kicked out of it in many areas, its a full on assault. Do you really think people should just leave themselves completely unguarded for this kind of assault? I say no way! No body is going to be prepared enough to defend itself against that kind of bomb going off once the threshold is surpassed and the full on assault begins, think of Normandy with no big machine gun batteries set up, its going to be a slaughter, and that is what the drug does to a defenseless body. Antioxidants are critical here, they protect the cells from damage, the body has these naturally but its not prepared for a severe poisoning, its barely getting by with the toxic World shit as it is. Other things are needed to soak up the toxins, to help the body remove them asap. And on and on, you get the idea from the post I made above for the what and why. The thing is, without the extra help, its like we leave the beach empty and just let the assault forces walk all over it, trampling everything in its path as it goes. With the extra help, you at least give the body a fighting chance.

          Now this analogy especially applies to a newly Floxed person or a person having a relapse. People a year out or more are likely in a very different situation from a newly Floxed one but if still suffering, they’re still with specific needs that are not “normal” at all and are likely not being fully met once again, so to me at least it only stands to reason that some extra help for this abnormal situation would be what the body really wants and needs.

        • Jason June 27, 2015 at 12:03 am
      • Jason June 26, 2015 at 9:12 am Reply

        Oh and you’re not kidding on the overwhelming part, there is just no way the poor average Floxed person can begin to comprehend what happens when they were blinded-sided by Doctor and take a Fluoroquinolone (and sadly therefore what to do about it after). Then nevermind those who have some knowledge of Human Chemistry and have researched the quins, as not even the scientists and experts know the full extent of everything going on, saying its complex is almost an understatement.

  25. tricia June 27, 2015 at 8:09 am Reply

    Does anyone know if burning pain can also be a sign of nerve regeneration?? I had PN symptoms when I first got floxed, but most of that went away in February of this year. For the last day or two now I’ve had burning / tingling sensation all over. I’d hate to think my PN returned!!! I did read somewhere that burning can be a sign of nerve damage and also nerves healing. I just don’t know. Is anyone else familiar w this??

    • SM June 27, 2015 at 9:14 am Reply

      Tricia- I can’t answer that question but do want to reiterate something I’ve wondered about many times. It is very possible that we have nerve pain and issues without actual nerve damage. There was just a comment yesterday on the FB group where several people had tested normal with not only nerve conduction tests but also skin punch biopsies. I’ve seen this many times from floxies- normal skin punch biopsies. There are a couple answers I can think of. One- there is no nerve damage but something else is disrupting the nerve transmission signals. Two- the tests are simply not measuring the damage that exists. Regular nerve tests often do not pick up abnormalities, especially when related to small fibers. But the skin punch biopsy is supposed to. Maybe the damage is there and these tests don’t see it? Of course there are floxies who do have PN as defined by a test.

      Another thing to remember with floxing is that healing often doesn’t work in a linear fashion like we are used to with illnesses. I know you know that already. When the burning stops we think we are done with that symptom, but then it can easily return months later. In my opinion, this is very normal with floxies. This isn’t like healing a crushed nerve where progress can be felt on a monthly basis in a linear fashion as the nerve regrows. It’s a little more complicated.

      So, are the nerves healing with burning sensations? Who knows. I often ask myself similar questions. Sorry I can’t answer that.

      • Daniela June 27, 2015 at 10:46 am Reply

        The tests! Ha! I test positive for all the pain ones, but my main symptom is vertigo. So you all can take it from me about solving pain problems, which is no dairy, gentle yoga.

      • Rene June 27, 2015 at 10:19 pm Reply

        I share the same view as you. There is a dis-regulation of signalling if you will…..which can improve. Consider tourettes, or epilepsy which are on the same spectrum if you will…..some nutrients like Taurine can mitigate these misfiring signals if you will. And toxic poisons can interfere with signalling. The test such conductive nerve tests are valid but of course they are also limited…..which again is used against the patient to be dismissive. Which of course has prompted all of to look deeper for ourselves.

    • SM June 27, 2015 at 9:47 am Reply

      Tricia-Also, in my experience with nerve crap, the symptoms have changed over time. My feet used to be crazy sensitive to fabric touching them (it felt like sandpaper rubbing) but aren’t so much any more. That’s been a slow change over 2 years but it’s really improved the last 2-3 months. They used to burn more too. They still do but not nearly as frequently. Lastly, for me the symptoms are no longer covering as much of my body. I still have many issues, but the area they cover is smaller and smaller. This doesn’t necessarily make my daily pain any less, however, if that makes sense.

      So things change and whether that’s a trend toward healing or not I don’t know. Different people heal differently. I know of floxies whose healing was super slow the whole time. I also know of floxies who turned a corner and improved more rapidly at some point. At this point, my healing is snail-slow.

      • tricia June 27, 2015 at 7:13 pm Reply

        SM,
        At least you’re noticing some improvements! That’s great and hopefully over time the pain will be slightly less and less.
        I’m about 7.5 months out and although things were getting horrendous at the 6 month mark, I feel I’m also improving somewhat. Today I was able to jog for one mile, whereas a couple months ago I couldn’t walk a half mile without my legs and feet cramping. I guess as floxies, it’s vital to take note of even the slightest improvements :)

        • SM June 28, 2015 at 9:13 am

          Tricia- Good for you for jogging! It is those improvements which give us energy to keep fighting. For me at least. When I feel stagnant, it’s very depressing.

    • SM June 27, 2015 at 9:51 am Reply

      Sorry, one more. For me, the pain is still there but the tingling and buzzing is rare now. No idea why. The pain sucks though!

    • Daniela June 27, 2015 at 10:43 am Reply

      I recently got burning in my heels. I also had this years ago and was told it is a sign of tendonitis. It went away that time, so I hope it does again this time as well.

      Gentle stretching will increase blood flow and assist in healing. But remember gentle :) One way I use is to sense gravity and let that help me go deeping into a stretch, with no pushing or pulling whatsoever. It’s meditative at the same time !

      • SM June 27, 2015 at 11:04 am Reply

        Daniela- You do no dairy? How long before that benefited you? What about gluten?

        • Daniela June 27, 2015 at 12:45 pm

          No dairy for pain, no grain for brain fog and digestion. Benefits were immediate (next morning) and it all comes back if I have some just as fast.
          Gluten-free for over a year did not work. I had to give up rice/lentils, etc as well for digestion and brain fog.

        • SM June 27, 2015 at 1:14 pm

          Thanks, Daniela. Interesting stuff.

        • Jason June 27, 2015 at 1:37 pm

          Daniela are you saying just giving up Gluten was not enough to cure your Brain Fog, you had to cut out all things that were hard on digestion too? If so, can you give a few examples of these things? TIA

      • Daniela June 27, 2015 at 2:45 pm Reply

        Jason, just replace grains with veg. A lot of supplements have lactose and flour, though.

    • Rene June 27, 2015 at 10:27 pm Reply

      Tingling or sharp pains, twitching can occur while healing, same as they occur when in a chronic injured state…..except they will be intermittent and not round the clock. Cominng and going…..that can occur after 2years or so.

      I have experienced astonishing peripheral nerve pain after 3 years from using vibration or percussive type of methods for body work. Not instantly…..but that evening and the next 48hrs I was burnishing and buzzing. This has to do with how that frequency of vibration travels along the nerves. So there are bona- fide instances where certain things can exacerbate ones previous injuries and yet that too subsides…..only to return when the culprit /or method that irritated the peripheral nervous system is repeated.

      • J June 28, 2015 at 6:50 pm Reply

        So if it is faulty nerve signaling then what helps reset that? Is it time? Are there therapies? My doctor is convinced that mine is a communication issue (I passed all nerve tests) and has offered some therapies but I can’t help but think it’s another stab in the dark – there has to be a way to reset the brain…to stop the misfiring . I had the same sensations in my arms originally that I have currently in my legs. No idea why my brain will keep misfiring to my legs and not my arms ?? My burning also is better but the tingling and bee sting sensations continue and it hurts to walk or stand. I exercise through the pain as my PT said since its nerves not tendons there’s no harm. It’s been about 9 months since I started and I’m no worse for it and in fact think it helped many areas – just not the nerve pain in legs . SM you have given me hope that the extreme sensitivity can improve as I can’t stand to have anything touch my skin on my legs . Anyway- I am currently on vacation and plan to enjoy every minute despite the pain!! I know I’m better than I was last summer so to me that’s progress- albeit at a snails pace!

        • Linda Livingston June 28, 2015 at 8:14 pm

          Nerve damage can definitely get better. One of my more hideous side effects was hyperosmia. It is really difficult to explain just how grotesque it was. It was olfactory nerve damage that caused everything I inhaled to smell as strong as bleach. For example, my ND’s office is the equivalent of say 1/4 block from the elevator. At my worst, I could smell a coconut candle burning in his office as soon as the elevator doors opened. And even after they put it out, put me in a room by myself, I could STILL smell it for an hour or so. Mere hand lotion would reduce me to tears. Everything was so asphyxiating I became a literal shut in. I couldn’t even take a short walk because the smell of flowers choked me. Anyhow, after several months of that, it is now 90% gone. As for therapies, and again, this is what seems to be working for me…I am doing phosphytidalcoline IVs, which are supposed to help with nerve damage, mitochondrial damage and circulation (among other things.) I have also heard that alpha lipoic acid is good for nerve damage as well as the B vitamins. Enjoy your vacation!

        • SM June 29, 2015 at 6:45 pm

          Linda- That is quite a symptom! Wow. I can’t even imagine. You hear this stuff and think, “How can that even be real?” But as a floxie, we all know that this can cause some crazy crap.

        • Linda Livingston June 29, 2015 at 7:19 pm

          Yeah–I really can’t do it justice. Had it not gone away, it would have been a “deal breaker” for me because I couldn’t be around anyone. I couldn’t even cook a potato in the microwave because the smell was too overwhelming. I actually went into a restaurant a few days ago for the first time since mid-February. It was the first time the fumes from the food didn’t asphyxiate me. I had to change out all my personal products for unscented. I also had nerve damage in my eyes (still blurred) and my ears (loud sounds would make me jump out of my skin) and the worst—my heart or the autonomic nervous system, which is still causing breathing problems. This stuff is such poison!

        • Rene June 30, 2015 at 7:01 pm

          Taurine 500 mg 2’x per day was helpful for me for twitching and has been given to those with tourettes or epilepsy……..of course only by Nutrient Based and minded Holistic practitioners with a neurological education. 5-HTP which helps support serotonin has helped me too. I purchase Thorne Research products becuase of quality which is key. iHerb sells for decent pricing.

          What state do you live? You may want to find a Carrick Institute educated physician, which means a chiro with that neurological training, and Kinesiology training to help with this. That is what I did…..not standard chiro care which is not worth anybodies time or money in my opinion.

        • Linda Livingston June 30, 2015 at 7:58 pm

          and bonus points for taurine—good for eye health and heart health

  26. SM June 30, 2015 at 10:57 pm Reply

    Rene (or anyone else)- A question on magnesium. I have switched from glycinate to citrate based on your thoughts. I’ve noticed from your past comments that you suggest about 400 mg per day, which is pretty much the RDA.
    Based on what I’ve read elsewhere, people should use the bowel tolerance gauge to measure how much to take. I thought citrate would affect my digestive system easily, but I’ve found I can take 700 mg of Natural Calm and still not have my bowels affected (sorry for the detail).
    My thinking is that I should take that much if my body isn’t letting me know it’s too much. Thoughts? Thank you!

    • Mark July 1, 2015 at 7:17 am Reply

      Hi SM,

      As far as I was told by an authority on magnesium the way you do it is correct. If you got diarrhea reduce the amount of oral magnesium you are taking. Or take angstrom and transdermal magnesium and get no diarrhea at all.

      Mark

    • Rene July 1, 2015 at 11:18 am Reply

      Hi SM, The bowel tolerance test is a good measure. However, if you decide to include using the Trans-dermal route, than you can decrease the Oral amount. The idea being that, if your intentions are to address the “intra-cellular” magnesium than the trans-dermal “mag oil spray”, will be something like 20 -30 sprays daily….or more or less. depending on size of person, needs….etc. Once you have discovered what the number of sprays fits you best than that in turn will decrease the amount of “oral MAG Citrate” that you need. Which also, will make it more economical too.

      My experience was 20 sprays 2x’s day the first 3-4 days than noticed that I went from feeling relaxed and good, to lethargic and so clearly I needed to decrease the initial dose. I decreased it in half, than again decreased it to 10 sprays per day. Remember to count the amount of sprays that you apply so that you can easily track what is working. Too little or too much.

      You will find that you just need 1-2 teaspoons of the Mag Citrate – Natural Calm.

      God Bless,
      Rene

      • SM July 1, 2015 at 11:28 am Reply

        Thank you, Mark and Rene.

  27. Linda Livingston July 1, 2015 at 9:39 pm Reply

    OK, this has been my month (well June) to contact as many pubic officials and news agencies as I could. I have contacted members of congress, congressional committees, public agencies, even the president. (I was thrilled to get a call from someone regarding my writing to the White House, only to find out she was with a mental health agency and was calling because I had the word “suicide” listed in side effects. Sigh.) I have written ProPublica, NPR, watchdog groups, and more. It is astounding this has been going on for so many decades and yet is still such an enormous secret, as far as doctors and the rest are concerned. And it is really time for the toothless, impotent FDA to go or have a serious makeover. I encourage everyone to write their representatives and anyone else they can think of that might be a more public voice.

  28. kelhatesfq July 1, 2015 at 9:47 pm Reply

    Something I should leave here as my symptoms have been acting up today. Due to stress. Sometimes you might think a website like this is over publicizing ‘hope’. Though the reality is if stress/depression can cause a refloxing any level of ‘positive or decisive determination’ is greater than any supplement or treatment for Floxing.

    Sure, don’t take Cipro again. Don’t allow someone to poke you in the butt with a syringe of X drug. Though(!) a lot of us may have a non-linear path of healing. Some may be sick longer and some may never recover to perfection(run 10 miles) some healing has to be possible for nearly everyone. Probably if determined almost everyone. My psychiatrist use to call me the most doom and gloom individual he had ever met and I can say that. That must mean something :P

    • Jason July 2, 2015 at 8:15 am Reply

      Yeah good points Kel, stress is a killer no doubt about it and I’m sure could bring on more symptoms or even a relapse. Hope and positive thinking are very powerful healers indeed, the mind is oh so powerful, people can literally “think” themselves sick or can help themselves heal, its been proven it has this kind of power. I know in the depths of suffering that hope and positive thoughts are very hard to hang on to, I seen first hand how this drug in particular knocks you down, and then kicks you when you’re there, there were days I felt so utterly hopeless, depressed, angry, and the list goes on and yet my floxing was not even a totally severe one, I could still walk etc so I’m sure those who are severely suffering must find hanging on to hope even harder. No matter the severity though when the poisons are flowing through your veins and attacking your body it is debilitating and quite demeaning overall, so any amount of hope from anywhere is indeed a most welcomed and much needed form of therapy for sure. This is where the stories I think help a lot, knowing that others suffered just like you and then got through it, they definitely helped me, I know I came here on my worst days looking for signs of hope that the shit would end, and I indeed found it here in the stories and in these pages. Thanks to all who passed it on

    • Linda Livingston July 2, 2015 at 8:58 am Reply

      your post just made me smile

  29. Peter2 July 2, 2015 at 12:57 am Reply

    Hello, everyone.

    Ive been on levofloxacin combined with metronidazole 10 days. 2 days after i stopped them i started having itching on my hands and elbows and i have some red zones there. Also some red zones started showing on other parts of my body but just the hands are itchy(and the scalp aswell). I went to the doctor and she told me to start taking prednisolon F(steroid – dexametason) combined with xyzal. However i see that taking steroids after levofloxacin can lead to really bad stuff. I asked about this but she told me i have urticaria and alergic reaction and i should start taking these meds.

    What is your advice? The itching is really annoying right now… im kinda worried about my situation right now.

    • Jason July 2, 2015 at 7:50 am Reply

      Hi Peter, all these drugs/chemicals/steroids are all bad no question. Search the Internet for natural ways to relieve this itching and rash and what does sound like an allergic reaction, for sure there will be some good ways, hopefully someone else with experience with it will chime in here I have none. Good luck

    • Rene July 2, 2015 at 12:48 pm Reply

      ASAP:
      Get into EPSOM SALT Bath! NOT HOT….just comfortably warm. The mag sulfate will help you detox. Repeat daily…..Also ASAP: Find Naturopath doctor who does IV therapies. You want Magnesium IV…..and glutathione push.

      This is what I would have done that first week of the onset of my adverse reaction. I urge you to do this, becuase it is safe and effective. Will not guarantee that you wont have issues, but to take these measures now is wise, and in my opinion necessary. This is a systemic injury.

      ASAP: Buy from Ancient Minerals on line, the Bath Flakes 1lb bag or more to make your own Trans-dermal Magnesium Oil SPRAY

      Use spray – spraying (1 or 2) pumps into palm of hand and apply to hips, legs arms, where and as needed.
      After 20 min. wipe off salty residue lightly with washcloth. (After you have used for a few days or longer you may find that at bed time you don’t need to wipe off reside – just your palms).
      (Keeps skin from drying out) Rinse of hands well.

      8 sprays will give you approximately 100 mg.

      To Start: You can use liberally for the first few days than you will want to decrease the amount used. The reason for this is that you will be well saturated. One-way to determine the # of sprays you need is to be sure that you count how many sprays you have used the First time. That is your measure to against.

      Example 1st Day of use: (20) sprays AM & PM (at bedtime)

      2nd Day: Same as before or less if you want.

      3rd Day: 10 Sprays AM & PM

      4th Day: Same as before

      5th Day: 5 Sprays AM & PM

      You can play around with the dosage…to determine what your needs are. If you feel relaxed, and your mood and energy better….that is Good. If you feel lethargic, or less energy, slight dizziness…. than decrease the number of sprays in ½ or less or Skip usage for a day.

      You should feel ease in your body, and suppleness returned to your musculoskeletal system. This has been a priority supplement for anyone with chronic stress, health issues, and Cipro or Levaquin exposure and for anyone who is eating non-organic food. All of us are deficient and not possible to replenish from diet alone, or oral supplementation.

      To Make your OWN:

      Ration: One Part Magnesium Chloride Bath Flakes: to one part Filtered water.

      I only make ¼ cup Flakes to ¼ Water because it lasts me a month and easy to make fresh sample. Put this in small pan to melt the flakes over low heat. About 60 seconds. Voila you have your own Magnesium Oil. Put in blue bottle and your set.

      FYI: Any tingling or stinging is normal especially the first days or weeks of application. If it burns, at a specific location then wipe off with wet washcloth. If it burns everywhere than you will need to dilute it to 1 part water to half part Magnesium. Many folks tingling or light sting is not bothersome, though kinda funny feeling, and mistakenly think that is wrong, or do not want to apply again. After 30 minutes all is absorbed. After wiping off residue warm washcloth the tingling stops. This effect does fade substantially after the first few days of repeated application.

      I apply it to my shoulders front & back, down arm to elbow, ankles front and back up to knees front and back of lower leg. Sometimes lower back, back & front of upper legs and sacral spine area and top of Gluteus Maximus.

      God Bless,
      Rene

      • Linda Livingston July 2, 2015 at 3:08 pm Reply

        Peter2—I would also find a trusted naturopath soon as well, and let him or her guide you. These drugs do deplete magnesium, but I would personally (and was) started on Myers cocktail IV because it contains magnesium, but also b vitamins which among other things will help with any nerve damage, and other antioxidants. Personally, the ancient minerals mag spray did nothing for me. I don’t have a tub either—just a shower, but in addition to the IVs I began taking chelated magnesium. Some forms of mag are more readily absorbed than others and don’t cause the laxative effect. You can search and find many sites that list the different types of magnesium and their benefits. Glad you are getting at this early.

    • Rene July 2, 2015 at 1:04 pm Reply

      Dear Peter,
      None of us are medical doctors….but for those like myself that have researched this intensively, Please do NOT steroids, NSAID!! Benadryl is your safest bet. However the bigger most significant picture is that you need Magnesium like you need water and air.

      I just posted a lengthy post about it, just minutes ago.

      Till you get your hands on magnesium bath flakes from Ancient Minerals….get EPSOM SALT and get into the tub ASAP. No added ingredients, listed!!! Not Aspartic salt, or anything with the words Aspartame, aspartic…etc. Just MAGNESIUM SULFATE.

      • Peter2 July 2, 2015 at 1:59 pm Reply

        Thanks for your help, i already started taking magnesium supplement orally(its in the form of magnesium orotate). I have Magnesium Oil spray as well. Taking vitamin C. I started taking antihistamines(benadryl type medication). Hope ill get this thing off me… And the funny thing is i still need to see if my therapy at least worked for the problem i had because there is a significant chance it did not…

        I dont have a tub – will soaking my legs into a bowl with the solution do similar work?

        • Rene July 2, 2015 at 7:18 pm

          YES! You can simply soak your feet in the epsom salt.

          However, besides the oral intake of magnesium which cannot address the “intracellular” need…..Buy the Bath Flakes from Ancient Mineral. Those will arrive probably by Tuesday or Wednesday next week…after the Holiday. Order through Amazon which is very good about fast shipments. By making your own spray as i instructed in previous post than you can benefit from the trans-dermal application. I cannot emphasis this enough.

          Oral Supplementation should be Magnesium Citrate…..The orotate is not the best form for absorption for your needs at this time. Depending on if you are in the USA or not, Vitamin shoppe sells a brand called Natural Calm – Which is highly absorptive, though will not address the intracellular need.

    • Heather July 2, 2015 at 4:51 pm Reply

      I would try benedryl before even thinking of steroids.

      • Heather July 2, 2015 at 4:54 pm Reply

        Oh and not all antihistamines are equal. Benedryl is the best for severe reactions, I have had anaphylaxis from foods before and that is the only one that could help.

      • Linda Livingston July 2, 2015 at 5:45 pm Reply

        I’m with you Heather. Steroids are why I got knocked down so badly by Cipro. Never again.

  30. Linda Livingston July 2, 2015 at 8:54 pm Reply

    I am sure that anyone who was floxed by Cipro would be loathe to think they had further lined the pockets of Bayer. Well, I was surprised to see the Bayer logo at the bottom of a Coppetone Ad, so I did a little research. It did NOT surprise me to find they also make insecticides, herbacides, adhesives, polyurethane, seed treatments and more. I , and found these labels are all now part of the Bayer Group: Claritin, Coppertone, Afrin, Dr. Scholls, Alka Seltzer, Flintstone Vitamins, Campho-phenique, Aleve (hopefully NO ONE is taking that or any other NSAID), Midol, Bain de Soleil, 1 a day, and of course Bayer aspirin. So let’s start a boycott! (I am sure the Johnson and Johnson list is even more extensive.)

  31. SM July 3, 2015 at 5:09 pm Reply

    Sometimes I have these moments when I think things could go my way. And other times I am rudely reminded that the pain is still here and still very real. My 2 year flox-a-versary just passed. In those beginning months I had no idea this is what I would be dealing with 24 months later. It’s a good thing too. I couldn’t have handled that knowledge in those early months. And even when I educated myself on floxing, I still didn’t foresee this. Not for this long.

    I’m convinced the mental and emotional aspects of this are as bad as the physical. And I don’t think I have any mental and emotional symptoms, not directly anyway. For me, as I’m sure for many, the fear that this may never go away or that it will take 4 years or 6 years or whatever, is the most difficult symptom. When my nerve pain flares or I’m on my feet and the pain builds, it isn’t so much the pain but the reminder that I’m still damaged, still not recovered. That’s what hurts the most in some way. If I knew this was temporary it would be so different. Not knowing is the scariest symptom of all. And it’s something that most non-floxies cannot comprehend.

    I constantly remind myself that most people come out of this crap and go on to have very normal and pain free daily lives.

    • Linda Livingston July 3, 2015 at 5:19 pm Reply

      I totally agree with everything you said, SM. It is still unfathomable to me that people at Bayer and Johnson & Johnson KNOW all these horrific side effects, have known for decades, and continue to market these drugs, especially for simple infections that could be treated with far less devastating drugs.

      • Jason July 3, 2015 at 10:21 pm Reply

        Don’t forget a big part of the problem is also how they are being misused, they were never meant to be used for simple infections, AFAIK, but as a last line of defense when no other drugs have worked to kill an infection, and for that purpose, if someone is going to possibly die, maybe they could serve a purpose, maybe.

        Used in that way, barely anyone would need the drug. Yet if you look up traveler’s Diarrhea want to guess what one of the number one recommended drugs are? Yep, being recommended as a first line of defense, not last. Not regulated properly, again the Funeral Directors of America (great label Rene! when it fits….) fail here big time, Doctor’s should be under strict orders for these kinds of potent dangerous drugs, really they should have to report if they gave them out and for what and made to report what else was tried first so almost restricted completely, and held accountable if given out otherwise, THAT would be one possible solution if its even going to stay on market. We all know they are that dangerous, and those #^(*#^*(#ers do too, but they do nothing. I wonder if there are other drugs that actually have those kinds of rules, I mean these quins are known to be one of the most dangerous out there, but likely there are others too (one similar to this was mentioned last page I think) so clearly these kinds of regulations if not in place, need to be.

        The more you learn about Government and their operating arms, the more you wish you didn’t know, that line from “the Matrix” always comes to mind….

    • Jason July 3, 2015 at 10:02 pm Reply

      Yeah for sure it is a terrible symptom all of itself just as you say, and like for you I’m sure also the worst symptom for many others too, which itself causes more due to stress. One of the definitions of stress is “having to deal with an important unknown outcome”, and really there is nothing more important than someone’s health. I know for me when symptoms were at their worst, like you the pain sucked but much worse was the angry, hopelessness, stress and depression that it provoked.

      On that note, Linda agreed it is a vicious heinous crime and definitely high on the list of some of the worst possible, and one where many parties are responsible for letting it continue, and to my mind those ones “allowing” it to continue are even more responsible, they know what is happening, they have the power to stop it, and yet they do not, why? Only one logically explanation, money, and very likely pay offs. Regardless, Bayer execs and all those who say it is safe enough to keep selling should all be made to take 6 weeks of Cipro, combined with with Advil and Steroids for good measure of course….Bastards

      • Linda Livingston July 3, 2015 at 10:14 pm Reply

        Yeah…can’t remember Jason if you were the one who told me about Rockefeller and the chemical greed machine that became entwined with allopathic medicine, the FDA and the AMA…but I am guessing that like Rockefeller himself, they don’t take their own drugs. It’s also so disingenuous for them to say “contact your healthcare provider if you experience of the (bazillion) side effects.” Because as we all know, it is already too late by then. I recently sent my ex-doctor a message ending in “how could you give me the same drug they use for anthrax victims, for a UTI? And why would you give it to me at the same time as prednisone?” I know I will never hear a reply to that, but 11 of the 12 MDs I saw were OBLIVIOUS and only knew what a “Great” drug Cipro is. More unnerving is that even after I handed them a ton of info, only one was even willing to let some new information in.
        But yeah, the manufacturers….how is this not equal to war crimes? We are being tortured, and as I mentioned before my worst side effect is horrific, often suffocating breathing problems. Yeah, like they’d ever let any of themselves or their families suffer through that. But, since this is floxie HOPE, I am not giving up on trying to find someone with a voice on a national level, to finally look at this.

  32. F July 4, 2015 at 1:30 am Reply

    Hi everyone, new guy. It’s time to say hi and to thank everyone for giving me hope. I have been coming to this site to read and try to figure this out. Thanks to SM, J, Rene, Jason, Linda, Daniel and of course Lisa, sorry if I missed anyone. I have been trying to figure out if I have been floxed or just some poor shmuck who just started having PN symptoms out of the blue. …But not out of the blue. Tinnitis and foot parasthesia started near the end of a long (6 weeks!) course of Cipro for a bacterial, possibly acute, prostatitis? fatigue, night sweats etc. Been 2 1/2 months since I finished the Cipro. Nerve conduction tests normal but Neuro says it could be small fiber Neuropathy. A year ago I was climbing mountains, now it hurts to stand in line at the grocery store..Depression?…yup. Severe! SM, J, reading back to your posts on June 25 and your discussion on some improvements to your and others nerve issues have given me hope. I have been a good student. Started good multivit, b complex, Magnesium, Ubiquinol, Methylcobalamin, Vit E, C, Alpha lipoic acid. Found a Naturopath and started Glutathione IV. SM, “J. Time. I know lots of people whose nerves recovered at 24-36 months. It’s awful but there is hope.” What you say about the anger and fear and hopelessness being worse than the pain. Any news that anyone has recovered from PN is welcome. Our worlds have been thrown into the meat grinder. Anything to keep going.

    • Linda Livingston July 4, 2015 at 9:52 am Reply

      Hi F! Sounds like you are so on the right track! You might also ask your ND about phosphatydalcholine, which helps repair nerve and mitochondrial damage, and high dose vitaman C—good for a multitude of things, but especially to help rebuild damaged collagen.

      And yes, I do NOT think it is all a coincidence. It’s strange how it impacts all of us in different ways. My worst was breathing problems, damaged olfactory nerves creating a hideous over-sensitization to all smells, the blurred vision and a ravaged GI system. BUT I did suffer peripheral neuropathy as well, among other things, and I hope this will be a boatload of hope for you. The numbness in my fingers (one of my first side effects) is completely gone. One finger I had lost complete control over—it just had these little like mini seizures where it would jerk all over by itself, but if I tried to use like for typing, it was worthless. That is completely gone. The numbness in my toes is 80% gone. This is after just two months of twice weekly IVs. (One of the IVs I get is H2O2 for my lungs, but I don’t know its other effects) But I have been getting the High C and PTC regularly, each with a push of glutathione at the end. So yes, there is definitely hope!!!

  33. F July 4, 2015 at 1:31 am Reply

    BTW, happy independence day to you Americans from your Canadian brother to the north!

    • Lisa Bloomquist July 4, 2015 at 7:04 am Reply

      Welcome, F and thank you for saying hi and for sharing your story! It sounds like you’re on a good path and I echo your thanks to the wonderful people who contribute so much wisdom and insight to this site. All of you are appreciated!

      The supplement regiment that you’re on sound good – like those that have been helpful to other floxies.

      Anything that you can do to improve your fear, anger and hopelessness is a step in the right direction. I think that a good talk therapist can be wonderful (preferably one who doesn’t think that more drugs are the answer to this – you have a reason for your anger and fear that isn’t going to be fixed by more drugs). Religious practices and communities can be helpful. Meditation helped me immensely. I think that a good acupuncturist and/or chiropractor could be helpful too. Getting my head, heart and spirit in good places were crucial for my healing. I think that those things are just as worthy of work and attention as the physical symptoms. All are tied together.

      Did you see this? http://floxiehope.com/2015/04/15/cipro-is-no-better-than-a-placebo-at-treating-chronic-prostatitis-chronic-pelvic-pain-syndrome/

      Regards,
      Lisa

    • Jason July 4, 2015 at 10:05 am Reply

      Hello fellow Canadian F, sorry to hear you are a fellow sufferer. Glad to hear you have been doing some reading, I think some of the most important advice anyone new can get here would be to read through the stories, and to also read back a good 5 or 6 pages in these pages and to look for people who have similar symptoms to you and what advice was given for them and in stories what they did that they think worked. Tons of wisdom and good advice has been shared just in these pages and some are from people who have done lots of research, of which unfortunately there is much to do

      I’ve posted some stuff in the past about PN specifically that I would like to re-post in case you never seen it.

      https://www.caring.com/articles/peripheral-neuropathy-treating-it-the-natural-way

      Looks to be some good suggestions there but the one warning I will give is with ALA, its a VERY powerful supplement that crosses the Blood Brain Barrier, and is often used to help detox metals from the body. Due to this, if a Floxie takes it could have some very nasty effects, especially in the dose they are suggesting and if the person is harboring a fair amount of metals.

      In doing more research, I found many other websites suggesting many of the same things for PN as that one I linked above, but also seen Magnesium, B Vitamins, Acupuncture, and acetyl-L-carnitine suggested by many other sites as well in addition to what is in link above. It also seems ALA is universally suggested by pretty much every single site, so there is likely research and real experiences to back up its suggested use. Also inflammation once again seems to be a key factor here, and we know this drug we took causes tons of inflammation, so reducing it another key.

      Acetyl-L-carnitine seems to be quite important as well, you can read about how it helped people with PN from chemo (so very similar situation) in a study done here:

      http://naturalmedicinejournal.com/journal/2010-08/therapeutic-effects-acetyl-l-carnitine-peripheral-neuropathy-review-literature

      Quote in the conclusion: “Given the level of evidence of ALC’s therapeutic effects on various types of PN combined with its lack of toxicity, ALC has the potential to dramatically affect the quality of life of patients with PN.”

      The Earth Clinic is a website where people have taken their health into their own hands to try and heal from every ailment imaginable naturally, I refer to it often and highly recommend it. For PN, there are 2 pages worth of comments over at Earth Clinic where people have been trying some of these methods, and discussing their results here: http://www.earthclinic.com/cures/peripheral-neuropathy-treatment.html

      Here is one of the comments: Quote” I have had peripheral neuropathy for years. I have discovered several things along my journey. The absolute best supplement (but not a cure) for me has been transdermal magnesium oil or gel. One of the symptoms of magnesium deficiency is numbness/tingling. The reason to use the magnesium transdermally is that you can get more absorbed directly into your system without the possible side effect of diarrhea which can occur with oral dosages. I have tried many brands, but Ancient Minerals is hands-down, the best. You should not use the magnesium if you have kidney problems or low blood pressure.”

      Note the Kidney warning, Debs from this site has wisely pointed out people would do well to have their Kidney checked after being floxed and before using Mag as Mag can be hard on it and the drug damages Kidney, Liver, etc

      Here is one more comment: Quote “I have been taking alpha lipoic acid, acetyl-L-carnitine, sublingual liquid Vit. B12 and omega 3’s for about 10 months. I found the combination helped lots but I still had symptoms. My neurologist told me to add MAGNESIUM . After lots of research I bought a transdermal gel magnesium that I apply to my feet and lower legs morning and night.That helped more. Magnesium is best absorbed through the skin. I also take a dose or two of the effervscent magnesium each day. NOW I have added turmeric capsules 3 times daily and wow lots of relief .I have been adding turmeric powder to as many foods as are suitable too. Research says that if you eat something with black pepper when you take the turmeric it boosts the power of the turmeric.”

      Note on the black pepper, I read exactly this somewhere as well, that it increases the absorption of Turmeric in a big way. I put both in my morning shake.

      Many more comments over at EC

      —-

      One last thing about PN, this looks to be a good general video for anyone looking for more info on PN, and I think he gives some general advice about it too, like high sugar is a real no-no etc (I did not watch it all but skimmed through it)

      • Linda Livingston July 4, 2015 at 10:34 am Reply

        yes all good stuff Jason, and regarding the tumeric/black pepper, you can also purchase turmeric that has something called piperine which again makes it better absorbed. Great anti-inflammatory, and a bonus. There was a study done where they substituted turmeric (1000 mg) for prozac, as an antidepressant. And the tumeric was just as effective. If you scroll down a bit in this article (after her food discussion) she gives info on the study http://kellybroganmd.com/article/move-over-prozac-how-turmeric-helps-with-depression/

        • Jason July 4, 2015 at 12:14 pm

          Anyone with depression or who knows someone with it might be VERY interested in a new article Mercola just published (click on first result that shows in this link below, FH would not let me post direct link not sure why):

          http://search.mercola.com/results.aspx?q=Social%20Anxiety%20Disorder

          All these SSRI’s are chemical garbage to begin with, many laced with Fluoride, again, and as pointed out by Mercola, unproven, and there was at least one study which shows HIGH serotonin is a more likely culprit than LOW, so for many people an SSRI is completely the wrong approach anyway. Not to mention (the ridiculous and notorious side effects, most need more pills to help with the problems the SSRI’s caused, Big Pharma agenda win again) they do nothing to correct a true imbalance, they only allow more of one single Neurotransmitter to be available to the brain, Serotonin. However, even if the person is truly low in Serotonin (which no Doctors even ever bother to test, believe me I know, they just throw the script at you based on symptoms only) SSRI’s do NOTHING to increase that level, so allowing more of it be available can once again be futile if the level is too low.

          This brings us to a much much better and more natural solution, actually making sure your levels of Neurotransmitters are sufficient, and then balanced. This is done with proper testing with a qualified and knowledgeable Natural-path (many are not properly trained for this, be careful) and then levels and balances are corrected with Amino Acid therapy (which I hope to post much more details about when I get a chance, they are critical for every single persons health).

          Ideally, again, people eat properly balanced meals and they get their much needed Aminos and other nutrition through their food, and then the body uses these for hundreds of things which includes manufacturing Neural Transmitters. Reality, once again, is most people don’t eat properly at all, and in many cases on top of that don’t exercise enough, smoke, drink, are overly stressed, don’t sleep enough etc so its no surprise Depression and 100’s of others diseases and ailments are prevalent in today’s overly stressed and busy society (of course there are more causes to these things, but diet is a huge one). You are what you eat was no joke folks, diet is imperative!

        • Linda Livingston July 4, 2015 at 12:24 pm

          While you were posting this, I was reading numerous articles on how top spots at the FDA are filled those who have close ties to big Pharma. What a worthless, dangerous, corrupt agency. And Jason, I have been on antidepressants for decades—told I would need to stay on them. I just got tired of it, when I found the article on turmeric. I weaned myself off and onto the turmeric, which has so many health benefits. I was doing great for over a year—until the Cipro got me. Still doing the turmeric though. The last pharmaceutical I am on is levothyroxine for low thyroid, and I am talking to my ND about getting off that too…

        • Jason July 4, 2015 at 10:14 pm

          Linda that is awesome you got off of those drugs successfully, something I understand can be very very difficult to do (yet another negative against them). I am surprised something like Turmeric can be THAT effective, but you are obviously living proof it can be for some people. Good God I feel for you Linda the last thing you needed after all those years was Cipro, but you are obviously very strong, determined and doing awesome at healing from that too.

          For the Thyroid, I think Bio-identical Hormones would be what Rene would recommend (unless I am wrong Rene?) and I think she has done much research on this where I am just beginning to. I am pretty sure my Adrenal glands are under active, and I’m currently looking into Hormones as therapy for it and other things but have much more reading to do.

        • Linda Livingston July 4, 2015 at 10:19 pm

          I am scheduled for a consult with one of my two naturopaths for a consult on the thyroid. Interestingly, some NDs are ok with the pharmaceuticals in this one area. I will follow her suggestion. Hey, she just cured me of a UTI with no antibiotics, so I trust her completely. Now, if I could just breathe normally again…..

        • Jason July 4, 2015 at 11:42 pm

          Linda here are a couple more tidbits you may or may not know.

          For Turmeric, apparently absorption is the one draw back, hence the recommendation to take it with pepper and as you noted some supplements put piperine in the mix. The company AOR makes a supplement using Curcumin called “Curcumin Active”, which is reported to be 100 times more bioavailable than standard Curcumin extracts (and apparently confirmed with Human Study). Now I haven’t fully researched all the claims they make so take what follows with a grain of…pepper. What I can tell you is AOR is a very good company from what I know, and they sell a lot of very well put together supplements.

          Here is some of the info they report about Tumeric and Curcumin:

          “Turmeric root contains several curcuminoids, and curcumin is the most
          powerful of them all. Unfortunately, turmeric root extracts contain less than
          2% curcumin. Even a 95% curcumin extract has such poor bioavailability
          that it is only effective in very large doses, and most curcumin products do
          not even provide a 95% curcumin extract!

          There has been much research over the last ten years to develop formulations that can deliver more of the active component curcumin in fewer capsules per day. Curcumin Active from AOR is based on the breakthrough results of this extensive research and is the most highly absorbable and effective curcumin supplement on the market – with the latest research showing a greater than 100-fold increase in bioavailability compared to traditional curcumin supplements. Just one capsule of
          Curcumin Active delivers an effective dose of curcumin, equivalent of over
          13g or over 30 capsules of a 95% extract.

          You can see much more info here:

          http://www.aor.ca/products-page/advanced/curcumin-active/#research_tab

          —–

          Note that most of the info is all geared towards the pain relief and anti-inflammatory properties of Turmeric and Curcumin, so a lot of it may? not even apply to the other important Neural properties you are more interested in. I actually tried this supplement for pain and inflammation as an alternative to Advil (this was even pre-flox…) and though it usually helped, it did not wow me for sure, and I don’t think it can compete with just rubbing Turmeric right into the sore muscle as Daniela suggested, but unfortunately that is very very messy.

        • Linda Livingston July 5, 2015 at 9:29 am

          thanks for the info..and yeah, I was more interested in anti-inflammatory. Also the study re antidepressants was done with tumeric itself, but I will definitely look more into this one..thanks

        • Jason July 4, 2015 at 11:43 pm

          There is some more good summarized info about all this again here:

          http://www.aor.ca/wp-content/uploads/2012/11/INFS04247-Curcumin-Active.pdf

        • Jason July 5, 2015 at 12:07 am

          The other tidbit I wanted to mention was on the Breathing issues. I’m not sure exactly what you are suffering from but for anyone with breathing problems there are 2 supplements that are supposed to help HUGE, and in fact I know more than one person who uses them and swears by them, one is my Step-mom with COPD. These things are reported to help people with all kinds of breathing issues too, from Asthma, to Allergies, to Emphysema, COPD and more. It has reportedly helped thousands and thousands of people but I don’t think its widely known about possibly due to only being mostly available in Canada (not sure on this??).

          The main one is RespirActin, a completely natural formula designed for breathing issues. Some of the ingredients:

          Rosemary, Juniper & Cinnamon – antioxidant activity
          Thyme, Sage & Spearmint – anti-bronchitic properties
          Cinnamon, Cumin, Juniper – anti-asthmatic benefits
          Clove, Ginseng, Chamomile – anti-allergenic properties
          Cumin, Damiana, Spearmint – anti-inflammatory
          Clove, Sage, Cinnamon -antihistamine
          Damiana, Rosemary, Cinnamon – expectorant
          Witch hazel, Fenugreek, Marshmallow – 5-lipoxygenase inhibitor

          You can read a little about it here and see some reviews as well.

          http://www.nationalnutrition.ca/detail.aspx?ID=2255

          The other supplement that is supposed to also help breathing issues and was recommended to me for my Mother with Emphysema by more than one person was NAC, and actually best if taken with with RespirActin as apparently they can work well together. I forgot the “why” for NAC, but when I got home and researched it I verified what the people who recommended it told me.

        • Jason July 5, 2015 at 12:11 am

          Here is a bunch more on it here:

          http://www.mjspharmacy.com/breathe-easy-respiractin-p-557.html

          And of course there is the manufacturer website as well. I hope if you end up trying it it helps!

  34. F July 4, 2015 at 4:15 pm Reply

    Thanks for the welcome everyone..and the advice!

  35. Suzanne July 4, 2015 at 9:53 pm Reply

    Been on and off this site since being floxed in January. I have made gains in some areas and none in others. I haven’t really told my story but I found that time, clean diet, as little flouride as possible (don’t forget it’s in food too) supplements of b-12 complex, additional b5, l carnitine, IV immunoglobulin monthly treatments and taking Gabapentin have helped me get to where I am today. I only drink bottled water and make my own tea with it. I have lost so much of who I am as a person and what defines me, it is so discouraging at times. I have seen a lot of docs and have had some tell me I don’t know what I’m talking about to doing everything they can to figure out why and how this happened to me. My newest doc is nicknamed Dr. House and I was told if anyone could figure out how to help me, it’s him. I feel blessed. I was bed, couch and house bound for months, now I get out and even attempt to drive (can only tolerate 5-10 min due to nerve issues) I have tested “normal” on all nerve tests including ncv, EMG, skin punch biopsies…no way I’m doing muscle or nerve biopsies…so, I want to let you know there is light at the end of the tunnel. Also, I look to this site for ideas of ways to possibly help me along. I find things that may help one person will not help me BC I have my own medical history. I know I was looking for anyone and anything that could help me when this happened to me, just be careful you get medical advise on what you may take, even supplements. I went from being an athlete to now being happy when I can walk 3/4 mile in less than 20 min. I have had so many different symptoms it is just crazy! The things that have helped me cope is to try and not look back at what you used to be able to do but look to what you can do today and hope for what you can do tomorrow. I had a neighbor die from cancer in February and I remember I am still alive. Not great, not who I used to be, but alive and there are so many other people worse off than I am! I actually saved my brother and mother from taking cipro and levaquin that was prescribed for them to treat a sinus and bladder infection, Crazy!! My purpose? Who knows?? Find joy each day in something you love and try, try so hard to just forget about it for one day as much as possible. It is hard to do BC its in your face constantly but live, laugh and love! I could go on forever and find I tell my story to anyone who will listen and spread the word. keep hope BC that is all I cling to at times. I miss my former self and life, esp my job, playing with my kids and being active. I hate sitting around!! But I am still here to be apart of their lives and just witnessed my dtr graduate hs! So, awaiting more blood work results, probable spinal tap and see where we go from there… Hoping for some answers. Btw, it most definitely affects mitochondria! FDA needs to support that warning!
    Have a great day everyone. Hope this all makes sense, it’s pretty late here… Happy 4th

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