This site is to give HOPE to those who are suffering from Fluoroquinolone Toxicity Syndrome as a result of being poisoned by fluoroquinolone antibiotics – Cipro, Levaquin, Avelox, Floxin, etc. It contains stories of healing.
Cipro, Levaquin, Avelox and all other fluoroquinolones are dangerous drugs that can have devastating effects that cumulatively I’ll refer to as Fluoroquinolone Toxicity Syndrome or Floxing. Fluoroquinolone Toxicity Syndrome/Floxing includes damage to connective tissue (tendons, ligaments, cartilage, fascia, etc.) throughout the body, damage to the nervous systems (central, peripheral and autonomic), and more. The damage done by fluoroquinolone antibiotics can destroy a person’s quality of life or even kill them. Certainly, there is a time and a place for drugs with dangerous side effects. If you find yourself in a septic shock induced coma, fluoroquinolones may save your life. Unfortunately, these drugs are not being reserved for life or death situations. People are being prescribed them for urinary tract infections, suspected prostate infections, upper respiratory infections, as a prophylactic for travelers’ diarrhea, ear infections, pink eye, etc. Thousands of people have suffered needlessly from the devastating effects of fluoroquinolone antibiotics, when another, safer antibiotic could have, and should have, been used.
The damage done by fluoroquinolones is largely unacknowledged by the medical establishment and an accurate diagnosis, compensation and relief are difficult to come by. There is no known cure for Fluoroquinolone Toxicity Syndrome/Floxing. However, many people continue to LIVE after being poisoned by fluroquinolones. They find healing, recovery, perseverance, compassion and hope. These are their stories.
This site is meant to give hope for healing to those who are adversely effected by fluoroquinolones. It is no way meant to disregard the pain of those who are chronically suffering from the horrifying effects of Cipro, Levaquin, Avelox or the other fluoroquinolones. There are people who don’t recover. Their stories are real and they matter. There are also people who are able to recover and I share their stories with the hope that they inspire others, or at least give hope that recovery is possible.
Here is a New York Times article about the dangers of fluoroquinolone antibiotics – http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_r=0 – more news stories, research papers and other resources can be found on the “Links and Resources” page.
Here is a Facebook group that is a great resource for those going through Fluoroquinolone Toxicity – https://www.facebook.com/groups/floxies/
Featured post – I’m floxed. Now what?
The Fluoroquinolone Toxicity Solution Ebook has helped many Floxies to recover, including Daniel, Cindy and Ruth. As a bonus, you will also receive The Floxie Food Guide – a book of diet guidelines to help you through fluoroquinolone toxicity:
This is a very interesting complex story that does show just how complex these Health issues can get, sadly this is very common, people chasing their tail, getting no where with Doctors of course, 1 step forward 2 back, no one believes her not even “friends”, goes on for years and years, etc
http://thepowerofpoop.com/tracy-macs-story/
I think many of you will identify with many things in the story, especially any longer term suffering or severe suffering people, I know I do myself
Note that Cipro is brought up in the comments, and several people who took it are there looking for answers in comments and also identified with the story etc.
Jason, you seem like a wealth of information and I’m wondering if you can reach out to me via email? amyrowe91@gmail.com. I have some questions for you. I was floxed three weeks ago.
Well Jason, it appears the people have spoken. Why don’t you get your ND and make it official? (btw did you see the post re HPLC from Alain in France? I am not familiar with that test.)
Hi all
I have not been writing here on a while. Not good at all.
Just have to tell you about this. My doctor has not belived me in all this, said that i have depression and anxiethy ( off course i have that in all this, but its because off The flagyl that i have been Hurt from)
In january i did a brain scan. The doctor told me that it showed that i had to little liquid in the brain, but everything else was find, and that its not Dangerous she said . Then i did a mri recently. She called me, told me that The only answer she got from this was that everything was find. But that she Will send it to another hospital to get a second apinion. Then i had a very bad feeling, that she had not told me everything. Last week i got my medical records/journals. I had asked about all that, even The answers from The mri and brain scan. I never got that, so yesterday i went over to my doctors office and said that i wanted every paper on this that they have. First they said that they cant write that out, but i said, Yes you can! And got angry, after a while i got The papers. And when i read all that, i was chocked, my doctor has been lying to me.
She her self, had been writing “this patient has special changes in her brain” and when i read both The mri and brain scan, they had been writing “tonsill herniation in the foramen magnum and to little liquid “. How could she not tell me this? Im so angry, mad, and sad. I have The right to know every thing thats going on in my body. Im changing doctor, but it takes time here.
And i also did other tests, and my doctor said, “you have damage to your feet like The diabetics have “, i asked her what that means, but she Will not tell me more. Im starting to Wonder if she is a real doctor, she dosent seem to know anything and not Telling me things. Im not going to write here what i think about her, but i have some words for her. 😦
Hi Ann,
What I don’t like about your situation is that they are writing that you have psychological problems not to help you, but only to help themselves. If you really had a psychological problem, they should help you immediately with that. It is as if they can say, This person is not worth helping because their problem is “psychological”.
But their treatment of psychological discomfort is usually dangerous psychiatric pharmaceuticals. So let them write all that stupid stuff. The treatment they would offer anyhow is just more dangerous medications.
Extreme anxiety and nervousness IS a symptom and proof that you were injured by the medications that were given to you.
In Chinese medicine, anxiety and worry lead to intestinal problems, such as IBS. And acupuncture has specific remedies for it. The anxiety that we are all experiencing can be the root of some of our other illnesses. So it is always good to stay relaxed and happy, which is not a very easy thing for us. And if nobody can help us with this, we have to do it ourselves as best we can.
So it is not necessarily a bad thing to have that on your medical records. You can even “thank” her for giving you more proof of being injured by flagyl. But try to find a doctor who is not as prejudiced as she is. It is becoming more obvious that anxiety is a product of these pharmaceuticals and you now have a record of it being diagnosed after taking flagyl and not before.
“Thank you for making a record of one of the known symptoms of pharmaceutical poisoning. Please refer to me to a doctor who will help me with ALL the problems caused by these medications.”
Much love,
Daniela
Hi Daniela
I know what you are coming from. I am just so happy that i decided not to take antidepressants, The doctor said i needed them. And i almost took it.
I have a history with panicattacks and depression, but i was find several years before this, and was happy, until this happened. And because of my history, she blames all this. But it showed something on The mri and brain scan, i did test at a neurologist, it showed that i have damage in my feets, but still its depression and so on. Im just so chocked that they want see this. But The sad part is that she lied to me, twice. But today i have talked to The Boss (dont know The Word in english) at The hospital, she needed to hear everything i have experienced with my doctor, so she said that this is not okay, and that i should have called her before. So now she Will let me see another doctor, and I hope that i can get more help now, even if i dont trust doctors right now. And she would personally talk to my new doctor so i can get right care.
Yes antibiotics cause alot of damage. And anxiethy is just one thing. When i think of it, i guess that it was that, that started my anxiethy along time ago.
Oh Ann, I’m so sorry. I am so sick of doctors saying there is nothing wrong. The late Dr Jay Cohen, in his book, writes at length about how harmful and unethical that is. I am pursuing a lawsuit on my own—daunting and I would not recommend, but I went back to the “neurologist’s” office because I lost a copy of his report. (He is the one that called me delusional over and over in his notes.) They would only give me the pages with stuff like my height and weight on them! I left without the rest. This is one reason (other than the fact I am so in debt) that I am pursuing this lawsuit. Thee doctors need to man up, admit they are not the infallible gods they think they are, and come clean.
I urge to contact that ND whose name I gave you that was referred by the ND here in the states. I know it is far from where you live, but please at least contact his office and see if he can recommend someone closer. Sending hugs.
Ditto that, Linda!
you know, there are SOOOOO many of us. It is miraculous that this is still the best kept secret in the medical community. (I mean aside from those who collude to keep it secret)
No Joke! I just had a conversation about it with my new, young dentist, who had never heard of it. We discussed the use of fluoride….or rather, NOT using fluoride on me. He was very interested in the topic, and said he was going to research it and would be talking to me again in the next few days. I gave him this website to help with his research 🙂 It was so nice to actually be “HEARD” and not told I was crazy!
OMG” that,a great! You know the one dr who was at all knowledgable and compassionate was also younger. There is a ton of info out there on how toxic fluoride is. Erin brakovich herself has campaigned against it. You ought to show him the story of how it started, so the aluminum industry could off load their waste. Also a list of countries who no longer fluoridate their water. It’s a step…..one dr at a time (who is willing to listen.)
I just read this on a FB post from the truth about cancer. Every product with fluoride says “not safe for children. “. Hmmm, would be interesting to look into that, esp since childrenareoften given fluoride treatments,
My dentist actually told me that water in the town that I live in does NOT contain fluoride. He has not lived here long, so that tells me that he has done some research on the topic. I’ve been living here for 20 years and I never knew that fact about our town water. He also told me to check the bottled water that I buy to see if it contains hidden fluoride in the ingredients.
our town will add fluoride to water system this month. Kinda worried.
Hi Linda
Thanks for your words
Im also sick of doctors saying nothing is wrong. And when they lie also, i mean, why? Why lie? I cant understand that. It was another hospital that prescribed me The medication, so they dont even have to think about it. Or do they want to protect The other doctors, i really really cant get it. She lied to my face,on The Phone and even to my fiance. maybe she never thought that i wanted to se All my medical records.
I think its very good that you are pursuing a lawsuit. Go Linda!
Its so Hard to deal with all this, im so sick, and have to fight The doctors, fight for my right in this. That should not be The case. But here in sweden i have done a report on The doctors in The emergency. Now i have to do a report on this doctor to. I know i have to do that, but i have hardly any energy left. My body is getting more and more sick. I just want to get better.
Im going to a ND Linda. I was there today actually. He is really great, he helps me with my gut, and try to help me to heal that. But he cant help me with The brain. That i have to see someone else for. But im going to go to this ND. He did blood test, send that to germany. And now i know that im allergic to gluten, oats, rye (is that The right Word?), so now i also know why i have had a really bad stomach before all of this to.
hugs to you to Linda
Yes..all the right words. And many of us (most? All?) need to avoid gluten. And yes I think doctors do stick together, and don’t want to make it look lik another dr did something wrong….self-protection. So much for the hypocratic oath. (How appropriate…when i started to type that last sentence, auto correct typed hypo critic.)
Linda
But its just so sick that they protect each other. Like we patients dont even exist.
But now i finally know why im not getting better, only worse, because of The tonsill herniation in the foramen magnum in my brain. All thanks to flagyl! And i also found that tonsill herniation has been reported as damage after taking flagyl, even if its not so common , and The prognosis dont seem to be good 😦
I had read an article earlier on FB about BAyer an J& J being sued for lying about Xarelto. The usual suspects. I found the email for a doctor who was quoted in the article and just sent a LOOOOOOONG email to him begging him to help do something to stop the use of FLQs. These bastards have made their billions from the misery of others.
I am so sorry Ann. I have never heard of that before. I looked it up and one site said that if it is not too severe it can be controlled with medication. I hope it turns out to be that. xo
Hi again Linda
Can i ask you where you read that? That i can take medication for it. Because when im searching it only discuss operation in The brain and that the prognosis is not good. I really hope i can have help for this. This also explain my bad headache, the pressure, dizzieness, off balance, my severe pain in my spine and so on.
I think fq should definitly be stoped, but not only fq. Flagyl is also a nasty poision. Talking to alot Who are damaged. So many drugs should not even be out there. The only thing i can think that this drugs should be prescribed, is when its a life or a death situation. For me, flagyl shouldnt be the first medication to take. But like my doctor said “Ohhh we prescribe that to pregnant women “
Hi Ann,
Sorry to hear you are dealing with such ignorant excuses for medical ‘ professionals ‘, I have so much in my medical records that is completely wrong, various things I was not told about its unreal, I probably have information in my records they are still withholding, this actually seems to be par for the course for many unfortunately.
The fact you mention that they think you have anxiety/ depression as a cause of your issues tells me all I need to know re this. One thing to keep in mind its that when medical records are released, Drs are allowed to withhold any information that ( according to them ) they decide could be detrimental to their patients health & this includes their psychological health .
It seems to matter nothing to them, that them withholding stuff & us finding out about it later could leave a total irreparable breakdown in trust of these people for life of course ( sigh )
I have symmetrical T2 high signal changes in the line of the corticospinal tracts on my brain MRI. floxing seems to often cause hypertensive lesions to show up on MRI, many of which which can mimic neurodegenerative conditions. they though I had everything, they tested me but I had none of them, instead I am floxed . I do not know the situation re this & Flagy, whether this could result in the same sort of thing l have not looked into it but will do so when i get time
The diabetic thing they are talking about re your feet, I would think they might mean you have peripheral nerve damage ( as this is often a complication of diabetes ). have you had any tests for diagnosis of this ? Ie a skin punch biopsy or a EMG/NCS ( not very useful that last one for diagnosing peripheral neuropathy, it will all too often completely miss it )
Hi debs
Thanks for your answer
Yes i did test with The neurologist. Not a biopsy, but They tested my big nerves. They said i dont have peripheral neuropathy, but i have damage in my feet like The diabetics has, but i dont know what that is. I hope i can ask my new doctor about this. Maybe its small fiber nerve damage or something with The blood circulation. Because i have really dry feet now, cant sweat, and my feet are cold, really really cold, my toe nails crack and are White and Bluetooth now
Im sorry that you have that damage and changes in the brain :-(now i know that i have tonsill herniation and to little liquid, but i have to find out what that is, and if i have to live with that or not.
Hey Ann, I think the medication is for when it is not bad enough to require surgery, to help with side effects. I read it on several sites. here is one: http://www.wichiaricenter.org/Chiari#treatment Also, I read something about spontaneous resolution on the national institutes of health site.
http://www.ncbi.nlm.nih.gov/pubmed/15854268
Hi Linda
Thanks for The links 🙂 very Nice of you. That spontaneous resolution would be Nice, because surgery in the brain sounds scary. I read that if you dont have so much symptoms you can get help from medications, but i have alot, so The surgery sounds better in that way. But i do need to get to a neurologist Again and a neurosurgeon or something, this never ends.
How are you Linda since last we wrote ? I hope you are getting better and better. Hugs Ann
well I hope you find someone who is an expert on this. yes, it would be great if it spontaneously resolved! Here is another site that talks more about the testing, etc. http://www.wichiaricenter.org/Chiari
I am doing better…had a bit of a relapse in the breathing problems and neck-nerve choking feeling but that is better. Still mostly anxiety, some lingering GI issues, vision problems and numb toes. But far better than I was.
Keep us posted!
Hang in there, Linda! Hugs!
Linda
Im so happy for you that you are better, than before. So sorry about your relapse, but good that you are better Again. 🙂
Thanks Again for The link that you send. I have saved that site so i can show my new doctor. But im afraid that they are going to say that i have to live like this, and that they Will not help me. But im not giving up
In the page you send, it says that The herniation can be from before, from choldhood and so on. But i have never had any problems before, so im sure i got this from flagyl. Found a page, that they had done research, and a few cases were reported that they got tonsil herniation from flagyl, so im sure its because of that. Now i just have to have my doctor belive me and help me in this. And like we all know with doctors, its not easy at all 😉
Not sure about in other countries, but here in the US, first psychotherapists are not coverdd under HIPA as far as being able to get records. As for other doctors, they can only withhold under certain conditions: notes collected for litigation, some research notes, notes held by a prison, if it endangers pubic safety or your own (and state laws may have different laws on this.)
Stephanie, I am sooo sorry. My feet stay on fire and sweat (or the are completely FROZEN). My feet sweat in the morning and my socks stay wet all day, which makes my feet cold. I wear diabetic and sweat absorbing socks, but doesn’t seem to help. I have notice my underarms sweating more, but contributed that to the fact that I rarely take off my coat because the rest of my body stays cold. Floxing made me lose my body thermostat. When I get outside in the heat or exert myself (which doesn’t take much these days), my body doesn’t sweat like it used to. I contracted toenail fungus because of my feet staying wet all the time. I tried to take Oil of Oregano for it, but it made me really nauseated and my head hurt. I’ve been using Tea tree oil, but haven’t seen much improvement. I take 3 mg of Boric Acid by pill. Daniela, do you apply the Boric Acid Powder directly to the yeast infection?
I have the same issues with sweat anything I do causes me to sweat I have to constantly change and powder myself. I feel like I smell all of the time. I take off clothes and put on clothes constantly. I have gone into fits a few times not being able to control my temperature. It was like from the beginning. I have lost total control of heat regulation. I am terrified of getting nail fungus so I force myself to deal with cold feet because I know they sweat too much. I don’t even know when my feet felt warm. I let the heat up a little and then let them get cold to keep from sweating. So tea tree oil was a no go:( I was thinking of trying that. but don’t want to spend the money. I have only tried grapefruit seed and tea tree oil powder to stop it. They sell it in a store where I live and it burns like nothing else made me sick from the burning but it stops the sweat takes away the odor and the yeast. I just was not prepared for it to burn that badly. I also have to pick away the dead skin. It’s so gross.
I don’t think you should ingest that much boric acid. One tiny capsule of boric acid powder in the vagina usually cures a virulent yeast infection within a day, or maybe needs to be repeated once or twice but not more than that. People also use it for ear infections in dogs. You just need a tiny bit.
Sorry, Daniela. I am taking Boron, not boric acid. I wonder if the Boron would help with my nail fungus. I will have to investigate that one.
Boric acid is this
http://www.amazon.com/HUMCO-HOLDING-GROUP-Boric-Powder/product-reviews/B001V9WY0S
Thanks Daniela. Found a video on youtube about putting some in your shoes for foot fungus, as well as other uses. I wear socks, so I’m not quite sure how it will get to my toenail infection, but it’s worth a shot. The way I have been feeling the past week, I will take all of the suggestions I can get in order to help heal my body. I’ve taken a down fall the past week or so. Trying not to let myself get discouraged, but it’s hard. It was 23 degrees here last night, and I still had to sleep in my room with no heat and my feet wrapped in cool rags, because they were burning so badly. My body temperature has gone crazy. They are calling for snow tonight…don’t really want to miss work for another snow day as work gets me out of the house and moving. But I’m feeling so poorly that I would welcome it at this point so I can keep my feet elevated all day. Thanks again for the information!
Hi everyone … I haven’t been able to catch up on comments for a while — house guests — but I wanted to post the following link. It’s from a pharmaceutical company in the S.F. Bay Area that is well into studying mitochrondrial damage. kpaxpharm.com
Their website, hopeforfatigue.org, has a link for medication-induced mitochrondrial damage, with further links for “Ways to Feel Better,” “Medication Induced Research,” “Medication Induced Clinical Trials,” and “Medication Induced Support Groups,” which lists FloxieHope. So perhaps you already knew about this, but I want to share this with anyone who didn’t.
http://hopeforfatigue.org/medical-conditions/medication-induced-gwi.html
Thanks Carla! Good to hear from you and know you are doing well….I’ve been struggling to stay afloat the past few weeks from a flare up that still hasn’t gone away. I just want to say “THANK YOU”!!!!! :):):):):) You are amazing, and I have enjoy reading your information on facebook. Also, has anyone tried Life Extensions Mitochondrial Energy Optimizer with BioPQQ???? Just wondering if anyone had tried it and gotten any results for Mitochondrial damage.
Hi Everyone,
I haven’t been on in a while, because I’ve been preoccupied reading as much as I can about my dx of Hyperparathroid.
But, I wanted to let you all know what’s going on with Colostrum and the HPT.
The Colostrum got me out of that HORRIBLE flare that I had been in for four months since
Sept
.
It took away the tinnitus, the dizzy, soupy head and the vertigo.
It helped with my joints, especially my shoulders so that I can now sleep on my sides every night and lay flat without the room spinning.
And it helped my stomach so much, that I now can eat whatever I want without any problems (so far).
With all that being said, all those issues are still there and things do flare them up, so the Colostrum didn’t whined up being my “cure all” 😦 But it keeps the intensity at a much lower level. So I don’t regret buying it or telling you all about it, because that and Magnesium have been the best help throughout this whole ordeal.
But I can’t go on living like this. Even with the help from the Colostrum, it’s a constant battle trying to keep the symptoms at bay, and it’s a constant guessing game as to what flares you up and what actually helps, and for how long it will help.
For example, the Colostrum worked like a miracle for about 20 days, then I started getting some worse flares, so I tried adjusting my dose but truly never knowing what I’m doing or why it’s flaring, or why the Colostrum isn’t working like a miracle anymore ???
So, I signed up for the surgery at The Parathyroid Center in Florida. I live in Ohio, so that was a BIG decision for me. But it’s the only dx I got throughout this, so I want to have the surgery PRAYING that it heals me or if nothing else, it eliminates it,
If you go on parathyroid.com and read What Patients Say, you will see these people are suffering in the ways we all are. So, I have HOPE that maybe this is the answer.
We can never give up on HOPE.
I’ll keep you posted.
As always, praying for the complete healing for all floxies!!!!!
Joanneg! Praying for you dear! As Bruce says, always praying for complete healing for all floxies!!!! Hang in there!
Here is one testimony,
Patient: NM. Cleveland, Ohio. Registered Nurse
Dear Dr. Norman: I am so excited and have been since awakening from my parathyroid surgery and realizing that all of the HORRIBLE symptoms that I had suffered over the past 20 months, that had literally debilitated me,are—GONE!! The generalized bone pain, the relentless nausea, the tired to the bone feeling, and most of all,the the Horrible dizziness and vertigo,are gone!!! You, with the gifted surgeons hands, and the intelligent brain, did what 11 other Drs. could not, you knew immediately that it was the high calcium causing all of my problems and you were absolutely right!! You have given me back my life and I plan to return to my nursing job and career in two weeks. I could never put into words my praise and thanks to you. I will be forever grateful.
Hi All,
So I am trying to get a news story together with a friend of a friend who works at a well known newspaper. I need short concise examples of your stories focusing on how Drs lied to you and or ignored you. Please send them as soon as possible along with any links to reports that I can send the reporter to the many reports about corruption in the pharmaceutical industry that can be linked to our situation. I want to make sure all our voices are heard and this is the easiest way😜. I have no guarantee that the story will run but with each of your help it will be enough evidence to support running the story.
From a Sr. Olymian/Master’s track gold medalist to difficulty walking thanks to one Avelox pill 3 yrs ago for sore throat. -Tom Marsella, Fresno 559 281 8181
Thanks Tom!!! This will help please everyone send in synopsis of your stories especially what doctors said or did like lie.
I was given Levofloxacin Oct ’13 by my Internist’s PA. After being diagnosed with Peripheral Neuropathy in ’14, asked Internist how I contracted, and his answer was, “anyone can develop PN”. I was familiar with condition, since my husband is diabetic. He knew his PA had prescribed bad med. The PA committed suicide in Feb ’15.
Deborah
nonna0815@yahoo.com
omg….do you think the suicide was connected?
Yes, Linda I feel it was.
That’s very sad and at the same time —this might sound weird—but reassuring to know that people really do care about what they have done. I wouldn’t want my doctor to kill himself–but it sure would be nice if he would take some responsibility for not even checking drug interactions between cipro and prednisone, and mostly for not warning me about possible permanent nerve damage and for not even being AWARE of how hideous these drugs are.
AMEN!
I’m starting to think that iodine somehow has a connection to the connective tissue health for floxies. My achilles was starting to feel much better after supplementing with it heavy for a week. I stopped and now it’s back to feeling unstable. Interesting. I am thinking that its secondary by getting rid of heavy metals and halogens such as obviously fluoride that break down the enzymes that build connective tissues.
Mark, I am going to start my Potassium with Iodine tomorrow. Hoping it will help with my muscle and tissue problems. Glad it helped! How much Iodine were you taking? I am very med sensitive since my floxing and have to be careful. Going to start off low and check for side effects.
I started with 2-3 drops in a glass of distilled water, and have gine up to 8.
Hello everyone. Took cipro for two weeks between mid January and the beginning of February this year. Five weeks on from stopping course now. Very worried. Tested negative for peripheral neuropathy last week via all sorts of nerve tests. Not sleeping well because I am so stressed. I just can’t switch off. Any help and advice from you all would be appreciated. Any tests I should ask my doctor for? Will write more when more cogent.
It is not at all unusual for tests to come back negative. There is a “Dear Doctor” letter here in Lisa’s list of resources from a Dr Todd Plumb, who was himself “floxed.” As he explains the reason the tests often come back negative is that the problems are functional and not structural. If you can, I would try to find an integrative or functional doctor or a naturopath, especially one that is familiar with fluoroquinolone toxicity. You also want to make sure to start taking magnesium supplements, the most bio-available you can find, and avoid fluoride. If you look through the resources tab you can find a lot of inf that you can take with you to the next appointment. Also, if you want to post what area you live in, there may be someone on the site who can recommend a doctor.
ps…and please, whatever you do, do not let a doctor try to fix it with more pharmaceuticals, especially NSAIDs or steroids
I don’t know what is happening I have been slurring my words for the past half a hour I have very limited use of my left side. I have spams where the top and sides of head burn so badly that I don’t know if I am having seizures. I have three more weeks till the neurologist can see me. I am scared that my boyfriend is going to watch me die.
I’m so, so, so sorry my dear Stephanie! I suggest that you go to the hospital. It’s better safe than sorry when it comes to stroke symptoms, and slurring words can be a sign of a stroke.
Huge hugs and prayers going your direction!
xo
Lisa
Thank you Lisa sadly I am very sacred of the hospital and I already owe them too much money from going when they told me I was crazy but charged me every time. Where I live the hospital is responsible for giving me Levaquin and reading over the notes it’s frightening. Im trying to stay positive and just hope that the damage doesn’t get worse. Has anyone heard of brain damage from this with my symptoms? I am just really scared I feel like the nerves on my left side are dying. Can that happen it’s just so hard to move on my left side. I get spasms when I do I can’t even grab a cup
Oh honey, I am so sorry. Have you contacted your naturopath? Also, if you told the neurologist that it is an emergency —or have someone else call for you and explain how desperate you feel the situation is, maybe he can squeeze you in sooner. I cannot imagine a doctor not accommodating someone in your condition. (When I first called my naturopath, he was booked, but when I explained how dire the situation felt, he told me to “come on down.” Like you, I would be afraid to go to a hospital. They will first want to redo all the tests you have already had, and then I would be afraid they would want to hook me up to pharmaceuticals that would exacerbate everything. PLEASE first thing tomorrow have someone call the neurologist and explain it is an emergency…perhaps even your ND would do that??? Please keep us posted. xoxox
Xoxo to you too I have been laying flat sleep no sound nothing so I can do a little bit. I am going to let my naturopath know what’s going on but as far as the nureologist he deals with high level cases so people with als and so on so they really don’t move patients because everyone is high level my naturopath has tried to speed it up and it’s just not possible. I am just scared and yeah no way in hell am I going back to that hospital there are multiple Drs that lied to me gave me bad drugs. At that hospital they don’t even redo tests they look up your old information and if they don’t know what’s wrong they charge you and release you and tell you that you’re crazy. I went there and the doctors were freaking guessing. It really comes down to my brain. My naturopath has exhausted every test it all comes out fine. He cannot get approved by my insurance company to get a brain scan Aethna does not allow naturopaths to order scans. I hate my insurance company I also think all of the long term disability crap has to do with this. Trying to deal and email everyone has caused me so much stress. I find out next week if I am approved. But my naturopath has said that to find out what he needs to next with me he needs to see the brain scan. Till then he would be guessing and can do more harm. He is very careful with me because he feels like so many have not.
I will let you know what he says tomorrow just scared and angry that my stupid insurance company won’t cover the scan if ordered from my naturopath. I feel like this is all on them he could have seen everything a long time ago if they would let him. I mean the man specializes in nerve damage works on people with crazy illnesses but nope the insurance company will charge me like $3k if he orders it.
Oh Stephanie! I think you should go to the hospital! I agree with Lisa, this sounds like a possible stroke. You need to take every precaution for your life! Have your boyfriend take you to the hospital immediately! Sending you prayers and blessings!
Hello !
We are in France. We are floxies.
We want to undergo HPLC tests to track residual fluoroquinolone in our blood.
The HPLC technology offers two possibilities :
[1] Measuring the amount of fluoroquinolone in the blood of a patient who undergoes a medical treatment. Typically: 10 mg/liter.
[2] Measuring the amount of fluoroquinolone in the blood of a floxie a long time after the treatment. Typically: from 0,0 mg/liter to 0,4 mg/liter.
However in the French HPLC centers the second measure is not provided in clear.
Instead, the result is labeled “0.0 to 0.4” which is no help.
How about English speaking countries?
Is it possible to have full results?
Greetings!
Alain
Hope I posted in the right place 🙂
Bonjour Alaine! I have never heard of this testing, and was not aware that there was a way to track residual fluroquinolone in the blood. I have always been told that there was no way to test for FLQ. Where did you hear about this?
Linda,
I learned this in a francophone forum called “atoute.org”.
Here is the URL of the section dedicated to the FQ.
http://www.atoute.org/n/forum/showthread.php?t=78772
I think the HPLC is very important for all floxies.
It allows them to assess their level of intoxication.
Also, the decrease in intoxication due to measures taken.
There’s just one problem.
The French HPLC provide no guidance in the area 0.0% – 0.4% concerning floxies. Some of us are afraid that this is done on purpose, so that floxies can not sue.
We are interested whether in English speaking countries HPLC tests are blocked or not the area 0.0% – 0.4%.
Yours.
Alain
My French is very rusty, but I could read enough to see how similar those posts are to the ones here. So sad. I did not see anything about the HPLC test. Interesting though you mention that you think specific data may be left out to prevent suits. That would not surprise me in the least. It is very difficult for doctors to confirm a diagnosis of FLQ toxicity, especially since most tests come back negative. Also, let’s face it—they are extremely resistant to thinking something they gave us did indeed poison us. I am currently in the process of my own suit against he doctor and the pharmacy for failure to warn. I don’t know about there, but here, thanks to a Supreme Court decision, if we took a generic, we cannot sue the manufacturer—neither the original one nor the generic one. As for suing the doctor, pharmacy, one of the major hurdles is proving “causation.” You and I know 100% what caused all this damage…but getting an MD to testify as to that, or even getting one to acknowledge it is close to impossible.
JASON—are you familiar with the test Alain refers to?
Stephanie,
Please check your blood work.
High Calcium levels can cause strokes, seizures, slurred speech, vascular problems, bone pain, tooth pain, hair loss, stomach issues, insomnia, brain fog, confusion, anxiety, panic, extreme fatigue, dizziness, vertigo and other symptoms.
When I read of the seizures and slurred speech I thought I should let you know.
Your Calcium level should be in the nines, but if you have a hyperparathyroid problem it can fluctuate from nines and tens or even higher, so check more than one of your calcium levels.
When your parathyroid glands are properly working your calcium levels will not fluctuate like that.
These fluctuating calcium levels could explain why we floxies get waves of more intense symptoms then periods of less intensity??
I’m 21 months out, and I just found out I have fluctuating high calcium levels and have been dx with hyparathyroid. I signed up for the surgery. I will let you all know if it works. It’s supposed to take every one of your symptoms away, a lot of times immediately after surgery, or some people said their symtoms gradually went away during the following two weeks after surgery.
I would go to the hospital and have them check some vital things like your heart, blood work (cmp) and I don’t know of anything for the brain except a ct scan.
I don’t know for sure, but I don’t think they can refuse anybody treatment regardless if you owe them money. Also, I wouldn’t worry about debt, your health and peace of mind is worth it. Just don’t let them give you any drugs/pharms.
I pray God helps you, and I’m so sorry you are suffering so much.
I meant to say the hospital “can’t refuse” you treatment.
Also, calcium controls our nervous system.
Stephanie, I think that Joanne’s suggestions are very good. Getting your calcium levels and parathyroid functioning checked sound like a very, very, very good step.
Thank you everyone it means a lot because I really am scared that by the time I can get to the neurologist that it will be much worse. I relooked over my records because I wanted to be sure all my stuff was in line and no one lied to me and my calcium levels are perfect. I had my thyroid scanned and they said it was perfect. I had my levels all checked and my naturopath redid tests because he said it made no sense my thyroid should be off nope perfect.
I really wish it was something else but in two months I was given around 10k milligrams of Levaquin/cipro and in one month given the same amount of flagyl plus also given steriods. I told doctors the whole time it felt like it was move up my left side through my nervous system and u said I think it going to my brain. They said I was just scared. Then the brain burning started and slowly started to take away my motor functions but I didn’t get the IVs till I was 7 months in and now it’s just really scary. I will keep you updated. I just am to the point where I truly blame the Drs who lied to me and my insurance company for their bs about what type of dr can order tests. I just don’t want to die at 35. I want to get my divorce and marry my boyfriend like we planned in the woods with close friends and a food truck. I just watched my boyfriend cry for two days because he is scared too. I’m to a point where I’m trying not to lose hope. I don’t understand our medical system.
PLEASE PLEASE PLEASE call, or get someone else to call the neurologist tomorrow morning and tell them it is an emergency and you can’t wait weeks to see him! Again perhaps you can talk your ND into making the call for you. xoxoxoxo
I will try and see how it goes. Fingers crossed. I just keep good thoughts for me. Xoxoxo
I will hold those thoughts too!!!!!
Stephanie, sending you lots of hugs, love and prayers!
Keep us posted joanne g! Praying for you! HUGS!
Hey Everyone,
I just wanted to let people know that healing my gut with a low FODMAP, gluten free, dairy free, sugar free diet has been helping me out immensely. At the end of last year I could hardly walk, couldn’t sit up, and had no energy. My muscles, tendons, and ligaments were screaming at me and it felt like I was dying. I’m still nothing close to my old athletic self today, but after a few weeks on this diet I’m now able to sit all day and go for a walk. I am also able to play with my two young children.
I had a battery of test performed at the beginning of the year and I am deficient in a number of vitamins and minerals, have multiple food allergies, SIBO, Candida, and Celiac disease. My IgA (gut inflammation) numbers are literally off the charts. I’m not out of the woods yet, but healing my gut has been the best thing I’ve done since this hell began a year and a half ago. I’m off of all supplements (used to be like 30) besides vitamin D, glutamine, biocidin, and topical magnesium. I eat at least 9 servings of organic vegetables a day (thank you Vitamix), antibiotic/hormone free/wild meat, seeds, nuts, and some occasional fruit. I only drink water (usually with lemon). I have not cheated once since receiving my test results. I can feel myself healing every day, so it’s not hard to stay the course when it means I don’t have to back to the pain.
I urge all of you test your gut health because I developed severe allergies to healthy foods like Olive Oil, Kale, Apricots, Zucchini, Cucumber and about 60 more seemingly healthy foods. For me it wasn’t enough to go on a gluten free diet or an SCD/low FODMAP diet. I had to figure out my allergies and go on my diet.
I don’t think it’s possible to heal your body without without healing your gut first. My fingers are still crossed because I feel like this is too good to be true after having so much pain and so many setbacks. I hope I’m no jinxing myself, but I had to share this update just in case anybody can be helped by doing what I’m doing. I’ll keep you posted as to my progress in a few weeks.
That’s great, Chris! It is so amazing how connected everything is to the gut. (Probably why there are so many books out now about the gut by Dr Perlmutter, Dr Josh Axe, etc)
That’s wonderful, Chris! I’m so happy to hear of your great progress! 🙂
Great news, Chris! Thanks for the update! I’ve been struggling the past few weeks with a relapse. You helped to give me hope again.
chris, who did all of these tests on you? was it a funtional doc? with sibo there are alot more symptoms involved. thanks dan.
Hi Stephanie…
Hope you are doing a little better and hopefully got in to see a “doctor”….I know how scary that can be 😦
Sending you hugs and prayers
Tricia
Hi everyone, I am on my second round of Cipro in about 5 weeks for a UTI. The first time around I didn’t finish the whole course because I was feeling better (big no-no I guess with antibiotics) I experienced no side effects. Well, my UTI came back a week ago and I asked my doc for another prescription of Cipro. I really didn’t want to take more antibiotics, and first tried to treat it at home with D-Mannose, but I didn’t want it to spread to my kidneys so I started the Cipro.
And then I decided to start researching Cipro. What a shock! So many horrible stories of bad side effects. I am so concerned that I will develop symptoms. I’ve been taking it since Friday, and was experiencing some nausea and light headedness. But today, since my first dose this morning, I’ve begun to feel tingling in my right arm going up to my face. Is this just in my head? Or am I beginning to experience a bad side effect? I’m really concerned, and feel like I’m caught between a rock and a hard place, I don’t want my UTI to come back, but I don’t want to have permanent damage from a drug. Please help!
I should mention I did put a call into my doctor to report symptoms today, haven’t heard back from her.
Thanks
Oh Nicki. First take magnesium a few hours before or after the Cipro, if you continue on, which I really hope you don’t. The D-mannose alone may not be enough…What it does is it keeps the little buggers from sticking to the wall. There is a way though to treat it without antibiotics. Get yourself to a naturopath. I did it, and I can’t recall the amounts (I know the vitamin started out with a lot and then you cut down a little every day. Anyhow, the treatment was with high doses of vitamin C, Vitamin A, D-mannose and Urinary system support from Herb Pharm. It is supposed to take a couple weeks—took me a little longer but I was retested an the UTI went away. Also, if you go to someone who does Chinese Herbal medicine they also have formulas to get rid of it. I really hope you do not stay on the Cipro. Please seek out a naturopath that is trusted. What area are you in?
not to mention—Lisa posted something a while back about a study where the control was I believe, Ibuprofin and the FLQ did not do any better! And no, it is not in your head. The symptoms you mentioned are indeed those of flq toxicity.
Hi Nikki
I would call your doctor and ask to be switched to a much, much safer antibiotic. I don’t think the symptoms are in your head, unfortunately most doctors dismiss the side effects/ damage causes from these drugs.
Take care
There was a post on Facebook FQT page from a lady whose friend (Ph.D. Biochemistry & Molecular Biology) was looking into FQ and damage to Mitochondria. There were many supplements in antioxidants category to help with cell repair or stop cell damage. There are so many supplements like Pycnogenol, Resveratrol and Mito 2 Max mentioned, then you look at CoQ10, NAC, and ALA, how do you know what is good for floxies?????
All of the mitochondrial support supplements certainly have the potential to be helpful for floxies. Lab tests have shown that NAC helps to protect cells from FQs. Several people have reported positive results from MitoQ. I think that all of the mito supporting supplements are certainly worth a try. If I were to do things over again, I would start with MitoQ because it has helped others.
Thanks for the reply!!! Being 8 months out, is this a supplement to prevent damage or help rebuild cells??? Or both???
I think it’s supposed to help with both.
I cannot sleep. Did not sleep a wink last night and only a few hours the night before. Can anyone give me some advice from experience. I am close to going into hospital to be sedated and very scared. Sorry this is not a positive story. Have taken one valium this morning. If you cannot sleep did anyone take sleeping pills?
Are you taking any magnesium Richard?
Hi Richard,
Here is a post listing some things that have helped people through insomnia – https://floxiehope.com/2016/01/18/48-tips-for-overcoming-insomnia/. Yes, sleeping pills have helped some people, but they have their own problems, and I think they should be avoided if at all possible. They can be addictive, they can have paradoxical effects, they can cause psychosis, they have rebound effects, etc. They are for temporary use only if you do choose to use them. I recently read a book called The Effortless Sleep Method that was wonderful and I highly recommend it. Insomnia can be panic-inducing. Please try not to panic. It will get better, and the calmer you can be, the more likely it is to subside sooner.
Hugs,
Lisa
Hi Richard. I did take sleeping pills because for several months I only slept 1-3 hours a night—and for the first few weeks I slept ZERO hours– and I had the additional problem of severe, suffocating-like breathing problems from Cipro. During the worst of it I was lucky to get one hour WITH the pill but it was the only relief I got from feeling like I was suffocating to death. At that point, I just really wanted “out.” As I started getting nutrient IVs and the breathing eased up a bit I started to wean myself off the pills. (I don’t think you have to wean, but I wanted to “trick” my body into getting used to less of it.) I was taking the generic for ambien. So, when my breathing eased up a bit I started cutting the pills in half. I did that for a couple weeks. Then I cut them in quarters and did that for a couple weeks. Then I stopped. I still had insomnia maybe one or two nights a week, but the others I was sleeping around 7 hours. That was about 9 months ago. Today, I only have insomnia maybe once every couple weeks and most of the times I sleep 8 hours. I would normally not recommend taking any pharmaceuticals now but sleep is so important, and it did help me get into a pattern. I had tried things I read about like different herbs and tart cherry, melatonin, etc. Nothing worked, so for me it was really the only way.
Also, they can be addictive. That is why it is important, if you do go the sleeping pill route,that you do it for the shortest time possible. I was on them for I think around 3 months before I started weaning off.
Richard, if it is possible to get it, a cannabis oil that is Indica-dominant will help you sleep peacefully. I am looking forward to the time we can all use cannabis in a responsible manner for healing and all the medical benefits. It is the best sleeping help I have found.
Many tips on insomnia here Richard
Unfortunately, chronic insomnia very often is one of the unwanted gifts from the FQs . Some of us are seriously affected, others have found some relief by trying various things. Here is a list of some of the things we have found that have worked for some of us to varying degrees. I have been in this world having been floxed 7 times in all, almost as long as the FQs have.
I was actually on sleeping tablets & they just stopped working for me when I was severely injured by my most damaging floxing. which is actually not a bad thing imho I can confirm this having done 15 years of research & ongoing on psychiatry itself, & all types of drugs including many of the psychotropic drugs, I realised there was something VERY wrong with those drugs & psychiatry itself, because of my own experience of spending many years existing in Iatrogenic neuropsychiatric hell on earth.
If you ARE thinking of going down that road, I would strongly recommend getting your OWN FULL ( as possible ) informed consent on sleeping tablets BEFORE you let them anywhere near you, & this goes for anyone here thinking of using ANY of the psychotropic drugs .
Drs as with the FQs, are completely misinformed & do NOT know just how dangerous these drugs actually are. For anyone who DOES decides to go down this route, I would suggest to take the lowest dose to be effective for the shortest amount of time, & then to get yourself OFF them VERY SLOWLY indeed.
Research Dr Peter Breggin for information on the psychotropic drugs, he has been inside the drug companies he has seen internal files, things others have not, & been an expert witness involved in many lawsuits, he knows what he is talking about . On his site & also on Youtube you will find his simple truths video series on psychiatry / the drugs, it is very informative.
Your average everyday Dr, they actually do not have a clue re the dangers of the psychotropic drugs, because the RAW DATA from the clinical trials carried out on them, including the truth on the adverse reactions is withheld to an immense degree, due to psychiatry & Pharma being tucked up nice & close in bed together, they have actually been joined at the corrupted hip so to speak for a very long time .
Primary Drs imho, should NEVER have been allowed to prescribe psychotropic drugs in the first place. They are literally playing Russian roulette with their patients lives, every time they write a prescription. Many people actually end up with lifetime careers as Iatrogenic psychiatric patients, all because of our Drs not knowing the true risks of what they are prescribing.
Always keep in mind that ALL allopathic drugs are poisons, & each of these drugs has a toxic profile. Some drugs are just more toxic than others, & generally those with a more serious toxic profile also carry with them, the potential for more serious ADRs.
There are actually many natural effective alternatives to the poisons Drs dish out for various conditions.
When Big Pharma, the Federal Death agency ( FDA ) & our Drs, trot out the same old tired line, & try to convince us of the following “( insert drug ) has been approved as ‘ safe & effective ‘ ” , please keep in mind that this is factually NOT correct . There is actually NO SUCH THING as a safe allopathic drug.
https://floxiehope.com/2016/01/18/48-tips-for-overcoming-insomnia/
I am ordering it if I can’t get it in my home town in England in the health food shops. Is there any particular type I should get?
Thank you for your reply.
There are many types of magnesium. The type that seems to be reviewed most positively by “floxies” is magnesium chloride applied topically. It is often sold as “magnesium oil” even though it’s not actually an oil. A company called Ancient Minerals sells a good one that I like a lot. Epsom salt (magnesium sulfate) baths are good too. Different people tolerate different kinds of magnesium differently, so if one doesn’t work well for you, perhaps try another. It’s also important that you have properly functioning kidneys before supplementing magnesium. Have you had your kidney function tested?
Regards,
Lisa
The FORM of magnesium used if a person has any degree of kidney impairment is in my opinion important. The fact that the FQs can cause both acute kidney injury / failure ( which is a known documented potential ADR from FQ use, and which you usually would know you have, & which if caught can often be reversed ) & the fact they can potentially trigger chronic kidney disease ( CKD ) later down the line, something which is NOT acknowledged by the medical profession, and which often has NO visible / noticeable symptoms until often around 60% or more of the kidney function has been lost (, loss of function which in CKD is NOT reversible ! ) and the fact that various forms of magnesium can be detrimental to kidneys which are not functioning correctly, all this means it is very important in my opinion to get kidney function tested BEFORE going down the magnesium route, particularly as many when using magnesium for FQ toxicity, often use magnesium at quite a high dose.
The medical professions approach to treating chronic kidney disease, seems to be as in so many other things skewed. There is a difference between kidney disease & kidney failure, & magnesium is SO important, however as someone who has CKD, I personally I would be wary & recommend using the pico-ionic form of magnesium only, IF it is found that a person has any degree of kidney impairment, & the more the impairment, the more cautious I would be.
For anyone using magnesium of ANY kind, I would advise regular testing of kidney function due to CKD being potentially triggered by FQ use later down the line ( & many allopathic drugs can actually cause damage to our kidneys ) due to the VERY important fact, mentioned above, that CKD often has NO noticeable/ visible symptoms until it is quite advanced, & this loss of function is NOT recoverable. Because of this fact, even if kidneys when first tested are found not to be impaired from FQ use, I personally feel it is very important to then keep an eye on them .
I would also advise when starting down the magnesium route, as with any new protocol, to start off slowly, as what can help one person or even many people, can actually hurt others . Magnesium is certainly not tolerated by everyone, It is certainly NOT something that agrees with me.
http://www.naturalnews.com/038713_kidney_disease_magnesium_nutrition.html
I am saddened to let you all know that “Destruida” has passed. I know that she helped many of you through FQ toxicity. She generously offered her time and advice to many. She was a powerful advocate for victims of fluoroquinolones. In her non-FQ-related-life, she also loved animals and spent much of her time rescuing abandoned and hurt animals. My condolences to all of her loved ones.
I don’t think I ever heard that name before, but anyone who rescues animals is a friend of mine. So sorry.
That sucks. She was hit pretty hard by Cipro as well if I remember correctly.
Was her death Cipro related?
Hi Lisa,
I remember her well. Many of her posts gave me lots of hope and inspiration when I was first floxed about a year and a half ago, scared to death. I am very sad she passed away, I know she suffered greatly but also recovered somewhat. I hope she didn’t pass away from any FQ related injuries:(
Thanks for letting us know and my condolences also to get loved ones…
*to her loved ones
I did not hear this. I didn’t know “Destruida”, but my hearts for hear family. I will be praying for her family and that her soul is now at peace.
I don’t know whether or not her passing had anything to do with FQs. I’ll let you guys know if I hear anything – if it is for releasing to the public.
You can read what happens on her blog:
http://destruida-los-restos.blogspot.co.at/?m=1
A Tetanus shot caused some kind of Cipro related relapse after which her skin lost the function to repair itself properly and she got painful infectious wounds mainly on her legs. Following that she planned to take her life. I’m not sure if she did it or died following the skin condition but in both cases it’s a sad story.
What sticks out is that she wrote in the last week before dying she passed away she told a nurse about the dangers of Cipro while she was in hospital and the nurse simply replied that she doesn’t believe her that her initial issues came from Cipro. F*ck them they’ll all get theirs sooner or later for that.
This was Kate (Destruida) before taking Cipro at age 60:
http://destruida-los-restos.blogspot.co.at/p/kate-alive-before-quintoxication.html?m=1
That’s what this f*cking Cipro and these stupid ass docs did to us, are doing to others right now and will continue to do in the future. Hope they all get it soon.
Rest in peace Kate! We all believed you and hope you’re at a better place now! (-_-)/
I read all and saw the pictures. I am in tears. And yes, f*ck them all. They say it can’t be the Cipro, it can’t be the levaquin….when they could take ONE FRIGGIN MINUTE out of their lives and got on the internet and actually BELIEVE a patient for once. I pray I NEVER have to go to a hospital and will avoid MDs like the plague. They need to educate themselves and reacquaint themselves with the hippocratic oath/ “Nor shall any man’s entreaty prevail upon me to administer poison to anyone….”
I looked up her blog and I am sick to my stomach. I am so sad for her and don’t know when the world will wake up. She must have been in so much pain. Fuck that nurse. How people in the medical profession can even attempt to say anything when they already have an answer is beyond belief. I just have no words except for curse words. I just want people to wake up. That her death was not in vain. I can’t stop crying.
yeah, I would like it to be not in vain…and all the other hundreds of thousands. With SO many people affected, in SO many countries, there has GOT to be a way.
There has to be something I want to do a candle light vigil something for her. I just feel like there are so many of us and we all lay in bed everyday hoping to get better sharing our stories and people just freak out. I just want to do something for her
Maybe we can start an impeachment campaign for the head of the FDA. Get people to sign to impeach that fucker. I don’t know the legal portion and cannot read much right now. But if anyone can find out what we need to do to start a campaign for impeachment let’s try. Let’s do it for everyone who lost hope and felt like the medical system betrayed them. Bernie says he can’t do it alone. If you vote for him or not is up to you but one thing he says that we all can agree on is that this country needs a revolution lead by the people to force government change. I am willing to go on the streets for this with my dog in toe to get people to sign this. I just need someone to help me who knows law to get this going. And some brave people to stand outside and get the signatures. Who is with me?
You can’t impeach the head of the FDA. a new one was just appointed. What about an Avazz campaign. They are world wide and they get attention.
What’s an Avazz campaign?
Avazz does worldwide online campaigns to advocate for various causes such as social justice, pollution, pesticide use, etc. They send emails with thousands of signatures to heads of companies, heads of state or whomever. google them
There will be a reckoning, “the mills of the gods grind slow but exceedingly fine.”
I am at a loss for words after reading about that poor woman in Spain. We all know that helpless feeling of not being helped or heard by the people who actually got us sick. My legs (below my knees) and feet looked like that for 6 months after being floxed. I was in agony. I can’t imagine having those lesions all over my body and the pain she is going through. My heart hurts for her. I feel so helpless. I’m with you, Stepanie! Something needs to be done to open the eyes of the world!
Thanks if you have any ideas let us know 💗💗 I dont know how to start petitions does anyone know how to start one for impeachment of the FDA head?
Steph, I only have pics of my toes blistered and the first big rash across my chest. I had more pictures, but they eventually made me so depressed (and suicidal) to look at them that I deleted them. I wish now that I had saved them for this purpose. I was floxed four times (and steroids for a year) within 3 months and got worse each time (and MANY times in my lifetime; however, I did not know what was actually happening to me!). I truly thought I was going to die. I, too, preapared my Will and got my affairs in order the best that I could considering the severe pain that I was in at that time. I, too, was mostly concerned about my sweet dog being left behind with no one to care for her. Death would have been a sweet relief. Unfortunately, I can totally relate to this poor woman in Spain. My heart hurts for her and her family. I wish for NO ONE to ever have so much pain that they welcome death as a sweet relief to this life. I only wish for people to live happy and healthy lives to the fullest. I wish our medical practitioners (and FDA) would actually listen and feel the same about their patients when treating them. My prayers are with this family and all of the people on this site for healing to occur within this lifetime! Living life should not be this painful for anyone! Blessings to all! I am so thankful for the support and information of the people here. Steph, if you would like those few pics, feel free to email me jackiewinn@hotmail.com
Stay positive suicide yer while I admit it to be so very tempting at times is not the answer. You have been through so much I get it. Believe me and I am still shaken from her passing. But we will beat big pharma we will win. They want us to give up because they win. I may need the pics later for something. Stay strong!!💗💗💗
Man that was tough to read. My heart goes out to her. As bad as FQ’s are, I’ve NEVER seen them induce the kind of stuff that she seemingly went through her last months. Horrifying. As hard as Cipro has made my life the past eight months, it absolutely pales in comparison to her experience and I feel fortunate that I can still live my life without many restrictions. Makes me think something else was afoot in her case as well.
The tetanus shot probably would caused no reaction if not for the cipro. I used to love a tens machine after a chiropratic adjustment. I got one after cipro and it put me in bed for a week. My nerves couldn’t take it. After getting poisoned by these drugs your system may be forever compromised.
Well I can’t even walk without excruciating pain since Cipro (2 years) and was a young athlete prior with no prior illnesses. Just shows that there are a wide range of side effects to Cipro and you are very lucky if you made it out again.
In Kate’s case it was a weakened cipro-body’s reaction to a tetanus shot I suppose.
It will be 3 years in june since I was floxed. My pain goes from my feet to the top of my head along my left side for months at a time (like right now) and rattles my brain so bad I can’t function. It is truly torture. I just called the Functional Medicine Clinic at the Cleveland Clinic to see what the waiting list is to get in–one year. There are 1600 people ahead of me. I said “what does that tell you about conventional medicine,” the lady on the phone said, “it doesn’t work.” This is the world famous Cleveland Clinic admitting conventional medicine doesn’t work.
I have actually referred people to the Cleveland Clinic after reading about it —had no idea they had such a long wait list! I worry about places like that being closed down by big pharma.
The CC is going to expand the functional medicine clinic. They are looking for more doctors to hire. They know that is the future of medicine and they want to cash in.
Oh that’s so sad. Destruida was a great source of help and information to me when I was newly floxed. Thoughts and condolences to her family and friends.
I’m sorry to hear that! I remember her posts well. 😦
Any floxies out there had dental work with Septocaine? Any side effects? I’m having a tooth extracted, and this is what the dentist uses: Septocaine – 4%. Little nervous about having it done. I was floxed 4 yrs & 4 months ago.
I am not sure about the difference between the two, but I would suggest calling around to an holistic dds (Huggins trained) and find out what they use. (Since being floxed I ONLY go to a Huggins trained dds because they use far less toxic materials, no fluoride, etc)
Yes, he is a holistic dentist. He uses acupuncture and essential oils for pain management. I’ll be using a clove oil paste he makes for after the extraction. My question was about Septocaine – a numbing agent, not about holistic dentistry and toxins. Again, if there are any floxies who have had Septocaine, please let me know if any side effects. Thanks.
OK, I am in the middle of writing an Avazz campaign petition. IT is asking for a picture…anyone??? something that really captures the devastation of this crap
How abou a picture of a mitochondria being distroyed?
hmmmm…not a bad idea. not sure how to get one that isn’t copyrighted. was also hoping for something a little more provocative. thanks steph
I would google pics of it and see if something that is more shocking pops up. Probably the best way to find a good one that will make people think that’s messed up lol
I have written to a site that uses The Myth of FLoxing pic…the “after” photo…in case I don’t hear back, does anyone know who owns the copyright?
Linda, I have a picture of my foot and ankle on my FaceBook page … Facebook.com/ChristmasCarla. I posted it as my profile pic once to get people’s attention. You are welcome to use it. I have more pics that are even more dramatic if you want … where should I send them?
Thanks…no longer needed. I was looking for a picture for the petition and I have one, thanks. You can see it here. https://secure.avaaz.org/en/petition/Congress_of_the_United_States_the_World_Court_in_Hague_Limit_the_Use_of_Fluorquinolone_Antibiotics_to_LifeDeath_Situatio/?cvrCmcb
OK everyone, I got the ok from the owner of the Myth of FLoxing photo (unfortunately only a small part fit in the space provided.) But I created an Avaaz petition. PLEASE SIGN everyone, and Lisa, if you have a way of sharing it with the FB fluoroquinolone site, or any other sites you are involved with? Thanks.
https://secure.avaaz.org/en/petition/Congress_of_the_United_States_the_World_Court_in_Hague_Limit_the_Use_of_Fluorquinolone_Antibiotics_to_LifeDeath_Situatio/?cvrCmcb
Way to go Linda. This could get some attention
I sure hope so. The other petition I did through another site doesn’t seem quite as global. This has just gone on too long, and with the new FDA commissioner a huge former big pharma guy, I won’t hold my breath waiting for the FDA to do the right thing. Please sign everyone, and then share and have others sign.
Thanks Linda! I have signed and already forwarded to my friends!
Thanks! I just posted it on some relevant post under an article.
I’ll share it tomorrow when there are more people online. 🙂
Thanks Lisa!
So horrible to find out about another person losing their life because of these toxic drugs. None of us willingly or knowingly gave our permission to be Poisoned. Sending my sympathies out to Kates family, and pray that her death was not in vain.
I posted her Blog and pictures on my Google account, wanting people to SEE what these drugs do to human beings. Kate wanted it to be shown, as she posted the pictures. I can now say I had several sores like that on my lower legs, about two years ago. I thought they were caused by scratching in my sleep, as the Neuropathy sometimes feels like Fire Ants biting and crawling inside my skin. That was about the same time I was given a tetanus shot as well ? I also signed Linda’s posted petition and shared it on FB, PUBLICALLY . People need to be WARNED, Doctors are not taking this seriously enough, I will scream out loud to anyone who will listen about how dangerous and deadly these Fluoroquinolones are. THEY MUST BE USED IN LIFE OR DEATH SITUATIONS ONLY !!!! After almost ten years of this suffering back and forth, I am not even sure I would want anyone of these drugs even then, Knowing my Life will become a living Hell after ingesting them. Wishing you all the healthiest days possible for you.
Amazing Linda💗💗💗
Hi Stephanie,
I’m really shaken up too about Kate “Destruida’s” death. It almost makes me want to get off all forums all together and just move on with my life in the best way that I can. This sight has tons of valuable information and support though, but sometimes it really fuels my anxiety as well 😦 of course after being floxed though, I think we all have tons of anxiety.
Hey Tricia,
I don’t think I will ever get over Kate’s death. I keep wondering was she alone? Did a friend hold her hand as she passed. None of deserve to die alone with no one their to comfort us. It’s all I can think about. Was her beloved pet with her? It just breaks me up inside. I have always been someone who gives people the shirt off my back with out expecting anything in return. I stop on the form then I come back. I come back because at the end of the day no one else understands the emotional and physical pain we go through besides us. People besides my boyfriend have a hard time getting it. So I come back because I know I need the support we all do especially on bad days.
I highly recommend Jigsaw Health supplements. They have sustained release technology (SRT) where you can take high doses and it is distributed to your body over the course of 8 hours. I take 4,000mgs in the morning of Magnesium and Vitamin C, and another 4,000 at dinnertime. This ensures that these crucial nutrients are in your body constantly.
Well, I am disappointed to say that so far there are only 16 signatures on the petition. PLEASE if you haven’t signed, please do so. THE ONLY WAY things are going to change is if we keep our voices being heard. I am sure no one would wish what happened to them on another soul, and if we keep making noise at some point this travesty will end. Please sign, not only to keep other from this nightmare, but also for vindication to all those doctors who said it was all in your head, or it couldn’t possibly be the cipro/levaquin/avelox….
https://secure.avaaz.org/en/petition/Congress_of_the_United_States_the_World_Court_in_Hague_Limit_the_Use_of_Fluorquinolone_Antibiotics_to_LifeDeath_Situatio/?cvrCmcb
I have signed and I think two other people from my Facebook share signed too😘
I knew you would xoxoxoxox
There are 105 signatures now.
Yay this is wonderful news!!!!
great!
Glad to know you are okay joanneg, jwinn so sorry about the colostrum causing you to flare up 😦 keep looking for what helps you. May each of you find the healthiest way possible.
Hi everyone, sorry to bother you all. I know you cannot give medical advice. But I need help. I can’t sleep. I have taken one sleeping pill for each of the last two nights. They don’t get me through the night. I am so wired, is there a safe sedative I can take? My parents are close to taking me to the hospital where they will just give me anything. I am desperate and scared. How can I help my CNS calm down. Is there a safe sleeping pill. I have taken two Zopiclone. What do I say at the hospital about sedatives.
Richard, I don’t know where you live, but if you can get some Indica-dominant Cannabis, preferably in oil, it’s the best thing ever for insomnia. It helps with a lot of other Floxie symptoms also … pain relief, anti-inflammatory, relieves nausea, stabilizes emotional swings … much more. I am so looking forward to our being able to utilize the medical benefits of Cannabis when it is completely available.
p.s. The Sativa-dominant strains are the ones that cause anxiety, paranoia and insomnia when overdosed. Indica strains are relaxing; if overdosed, you just sleep more.
Zopiclone is a nonbenzodiazipine also. Should I avoid pills? What if I need something. Do any of you know a Doctor who I can phone who understands This problem. It is almost six weeks since I stopped the course of cipro. I took it for two weeks. Did you guys suffer insomnia. I will be blunt how did you cope with the panics.
Thank you all again
Hi Richard,
please try not panic about the insomnia situation this is so very common in us , to feel like we are extremely wired, to feel like we are overdosed on caffeine 24/7 to not be able to sleep. I have not not been able to sleep myself for more than 3-4 hours for a very long time myself. Please just be very careful going the hospital, all they can do is to prescribe more drugs for you, probably psychotropic drugs for this, & please keep in mind we can often have a problem metabolising many allopathic drugs due to the FQs inhibition of the Liver P 450 enzyme pathway.
Personally, I have gone many days without sleeping before, but eventually I do crash & sleep ( albeit for only 3-4 hours ) every single time. This is something SO many of us experience, I have been in this weird world we inhabit long enough to know that this situation is so very common for so many of us. Despite all this i am still here, & still functioning, despite being unable to sleep for days on end every so often, & apart from this no more than 3-4 hours a night & after 26 years after being multiply floxed . It is something I eventually got used to & now even seems normal for me. Please, although it is hard I know not to do so , try not to panic about your insomnia situation, it will just make things feel even more awful for you.
What have you tried so far in the above tips posted ?
Allopathic Drs I feel are not the answer here for our type of insomnia situation, sleeping tablets actually stopped working completely for me after my most damaging floxing I feel our insomnia is different than what is considered by allopathic Drs usual insomnia. So I was wondering, have you looked into finding an alternative Dr for this particular problem ?
Beyond Meds is a very good site for seekiing alternative treatment, there are many useful tips / information here on various subjects anxiety panic trauma insomnia etc. click on the links at the top of the page . I find this site very useful indeed myself .
http://beyondmeds.com/2013/02/05/help-for-insomnia/
Thank you so much for your reply. Are there any medical tests I should have done? My mother thinks acupuncture might help. May I hear your story?
I believe acupuncture helped Lisa. It helped me later on, but what helped me most early on was nutrient IVs. Scroll through some older posts and you will see a lot of info on what helped different people. And I am with Debs re allopathic (western med) doctors—unless you find one that is integrative or functional. Otherwise I would find a good naturopath.
also be aware that many tests may (in my case ALL did) come back negative. The reason was explained by a doctor (Todd Plumb) who was himself floxed. The problems are functional and not structural.
Linda I carry Dr Plumbs letter of experiences that happened to him in my purse along with Dr J Cohens book.. I argued with my Primary about these drugs, he looked the black box up in front of me blah blah blah may hurt people over Sixty on Steroidal medication.. I said KEEP READING ! People of Any Age, I said so now younger healthier and mostly physically fit people are becoming severely INJURED because of what You just Did…READ THE ENTIRE WARNING. Not just the small print. Thousands upon Thousands of people have already been injured, more and more each and every hour of every day ?????? THIRTY YEARS IS LONG ENOUGH. I Thank God for leading me to this site and all of the wonderful information provided here. I am going into my Tenth year and have absolutely no idea how I am still alive? I can only say I slept a lot, after the initial insomnia phase. I was Floxed six times within two and a half years, I think it may have been because I was physically fit except for a knee and back injury, I also had nerve damage in both my hands and wrists. I had blood work done, and was just sent for more TWENTY TWO TUBES to be exact.. this past Wednesday, had a death in my family so I had to put it off a week, wont know results until 4/12. I will of course pick up my reports not knowing much about all of the tests freak out but I need to know. Best of luck to all finding what helps heal you best Hugs
Just saw your post. I took Dr Plumb’s letter with me and a half dozen other articles from places like Mayo Clinic and could not get ONE doctor to even read them!!!
Well, I was so angry after my latest episode with the neurologst who called me delusional, and refused to give me my records, that after I filed a complaint about him to the CA Medical Board, I composed a LONG letter to the Government Accountability Office. I didn’t even know there was such a thing! Well, they just got an earful on the FDA, Bayer, Johnson and Johnson and how they have put greed over our well-being. One day, and I hope it’s soon, all of this is going to come out, and THEN we will no longer be ignored.
Wow, that’s a LOT of tubes. I had about 20 once…hope they come back with good news. Let us know.
I my experience it is time passing that will in the majority of people help a great deal with the insomnia issue , you are I see, very early indeed into your reaction Richard.
My story is a very long one more like war & peace lol .
I have been floxed 7 times myself with various FQs. acquired along the way 3 misdiagnoses & a lot of malpractice etc badly treated by allopathic medicine. I have done a lot of research into many things as a result over a long time. Floxing is extremely complicated, there are many things that can be tried, various approaches for the various symptoms which might help & I am sure others will chime in here with some tips for you.
there are many helpful comments on here if you look back through them, & also in the information on the right of the page, along with inspiring stories of people who feel they have recovered from this.
Although I have been around for a very long time I would never consider myself an expert on floxing, absolutely not it is very complicated
Having been around a while however I do have the benefit of being able to see the bigger picture in regards to our various symptoms & see patterns .
The majority of people who have been floxed in my experience & opinion, eventually do recover to the point where they are able to move on with their lives where this situation does not consume every waking moment & thought. Some will reach a point where they eventually feel completely recovered ( this I experienced after my first floxing after many years , & I also reached a point in a subsequent floxing where I felt around 80% recovered ). The biggest majority of recovered floxies I feel in my opinion & experience are those who eventually are again able to move on as above where this becomes just another bad life experience which can be consigned to memory, albeit with perhaps some lingering issues, perhaps a certain amount of exercise intolerance to various degrees , aches pains they did not have before , . that sort of thing.
This is not a short term situation for the majority unfortunately, where we are so used to becoming unwell then quickly recovering, say as with the flu, it can be very hard to get our heads around thinking in a different way , but if possible to do this can be very helpful to try to adjust thinking patterns to think of healing over a longer timeframe.
It can be helpful to see a neurologist, I personally feel, but one thing to always keep in mind when going down the testing route of any kind is that floxing mimics many other things, often CFS/ME Fibromyalgia etc & Drs are trained to match symptoms with known conditions.
FQ toxicity can even cause the markers for various autoimmune conditions to show up in the various tests used for diagnoses of these. what often happens in this case is that the markers will then be no longer detectable further out if the person is retested . Many of us are misdiagnosed with various conditions we do NOT actually have, so please just be a bit careful if you do go down the testing route, especially so whilst so early into your reaction.
It can be overwhelming as there is such a lot to learn , please do not panic about trying to find it all out at once, & if you start feeling overwhelmed with all the information it can help to take a break now & again, in fact I still do this myself .
I hope this is of some help .
I’m curious, Debs how you got floxed so many times. Is it because at the time you didn’t know the cause and ended up getting more FLQs?
Yup, unfortunately so . I did not join the dots until I decided to obtain my medical records. I eventually have managed to acquired 25 years worth. I have a few still to get from way back, so hope their are no more nasty surprises.
I now have so much paperwork in regards to these records, that that they actually have their own bookcase lol .
Ugh. How awful. I too started looking back, thinking this was the first time and Cipro and the reason I was hit so hard was because I was given prednisone at the same time (which I know didn’t help) and sure enough—I was given levaquin a few years ago. Looking back I think I may have had some minor reactions, but because I was sick I just attributed it to the illness. I have moved around a lot so not sure I could even remember doctors I saw as far back as you have gone! And let me guess—were you told you had fibromyalgia? chronic fatigue? some other mystery illness? What makes me so angry is that while we may not have connected the dots, the FDA and drug companies did long ago. Unconscionable. Was each time you were floxed worse than the last?
Has anyone heard from Joanne g? I know she was scheduled for surgery. Was hoping for an update by now. Sending prayers your way, Joanne g! HUGS!
Hi jwinn
I’m still here:) and thank you for your prayers.
I applied for surgery at the Norman Parathyroid Center in Tampa, Florida.
They gather your lab records from your doctor(s) and decide whether or not your labs indicate that you indeed need surgery, then you are either scheduled or denied.
Well, I’m still in the gathering my records stage, which they say is the longest part of the process. If I’m excepted, the surgery will take place roughly within five weeks of exception.
I will definitely keep you all posted throughout this process as I find things out.
How have you been jwinn? Last I remember you were flared up from the colostrum. I sure hope you have found some relief.
You may want to try supplementing with Iodine, Borax, Vitamin C, and Magnesium. That’s a great protocol to naturally cure hyperparathyroid without having an invasive surgery done. All these things are essential for floxies I believe as they also detox fluoride. Something to think about.
Hi Mark S,
I thought about doing that protocol. I found it on the earth clinic website when I was looking for natural ways to cure hyperparathyroid.
But, I decided not to go that route after watching a women who tried it and recorded her results for a year, and in the end her levels were worse.
She wound up having the surgery and was healed of all her symptoms.
After already suffering for 21 months, I didn’t want to try another thing that possibly doesn’t work at all, when the surgery has a 98% success rate.
To put it briefly, I’m just tired!!! Tired of suffering, tired of supplements, and I’m just praying this is this answer.
But, I do appreciate you trying to help me, Thank you 🙂
Hi everyone, did anyone get bad leg pain a month or so after stopping their medication . My buttocks, hamstrings, calves are all really hurting. I am spasming /twitching when I try to go to sleep. I am so distressed I am sorry, I don’t know what to do. Can I take painkillers and or sleeping tablets. Did not sleep a wink last night after 6 hours the night before.
Yes Richard I did and still do it’s common amongst those cipro victims who experience tendon and muscle pain.
This isn’t medical advice so consult your physician but I would take magnesium (angstrom and ancient minerals) asap…
Possibly about to go into hospital for distress. What should I say to staff?
Have you gone to an ND for IV treatments? I have them all of the time. For me in the beginning, I was foolish and took pain killers and it made me much worse. I suggest getting medical marijuana. Ask them what is good for pain and they will set you up and you will feel better and get some sleep. Personally the only way I will ever go to a hospital ever again is if something is broken. Hope you get some relief from your pain.
It is likely they would give you steroids which could make you worse. They probably wouldn’t believe this was fq related. It’s a scary time and you may be dealing with this stuff for a while. It is not likely conventional medicine can help you as they caused the problem in the first place. Find a functional medicine doctor. Take magnesium and some of the other supplements you have heard about here. Are you using the topical magnesium oil? You may want to check out the website “the healing gift” and talk to Linda Freud. She is a medical intuitive. She helped me out when I was first floxed. GABA might help you sleep. When I was first floxied a glutathion IV helped immensely. You need nutrition and you need detoxing but the detox has to be controlled so its not too fast. Linda Freud is good at that.
So I just got denied my long term disability thank goodness for my hr because they are collecting all the information to fight it. I have to apply for social security disability and feel hopeless like giving up. They ignored everything my ND said and found out the first neurologist lied and said I was okay. He saw me once gave me medication said it was the original medication. I don’t know how I am going to live I have cancelled my doctors appointments except for the new neurologist to hope that he can be the voice of reason. I feel so lost so hopeless. I keep getting doors slammed in my face when non of this was my fault. I keep just falling I’m scared I’m going to lose my boyfriend and be homeless. I don’t know what I’m going to do. I have somethings I can sell and I feel like giving up. This is too much I told my case worker what am I supposed to do till the appeal? I told her I can’t work she said she knows but that’s what the counsel concluded. I told her I won’t be able to live or go to the dr that they have signed a death warrant for me. She just listened. I said I know this is being recorded and that prudential just killed me. You killed me. I had to fight the pain to fill out the social security forms I just feel like going some where with a sign that says that prudential and big pharma killed me. I have tried to stay positive but this is too much for me I’ve worked since I was 15. I told my case worker I’m not lazy I have worked my whole life. I don’t know what’s going to happen to me. I don’t understand this. My friend said he was denied when he had cancer. These pacs are evil. They are bent on killing people. Forcing people to become homeless I have enough money to pay my half of rent and eat chili from trader joes for a month. Beyond that, I’m up shits creek.
I hate that this is happening to you!this is why I am so passionate about sending letters and emails….so someone with clout somewhere finally pulls some strings and shines a light on this horrific fraud. There was a dr on a 60 minutes segment re death with dignity. He sai it was a cooruption of the medical profession. I found an email address for him and let him have it…telling him the corruption started long ago with big pharma and the FDA and he should worry less about people wanting out with terminal illnesses and more about the ones that drs and big pharma are destroying. I cannot believe you were denied disability. Can you find an integrative doc who might go to bat for you? Did the turn you down because it came from an nd? Probably, sine the don,t recognize them and don’t pay for their treatments. I am so so sooty steph. I hope your hr has some success. Hang in there. Xoxo
They completely ignored my ND. I don’t get it he was good enough for short term disability. They said there was no blood work to prove it and no tests and I’m still being diagnosed. Wtf is that? I just can’t anymore. I filed for social security I emailed my ND and told them what happened. I said I can’t afford to come till I get the appeal reversed it will take at least three weeks and all I can do is sell crap. I feel like I have been punched in the face too many times.
Xoxoxo Linda
OMG OMG OMG. What if you showed him something that says that most tests come back negative anyway? That letter from dr Todd Plumb on this site says that radiological tests usually come back negative. He then mentions other tests, but says “may” show something. A disability lawyer, I believe is like most personal injury lawyers, where they don’t charge up front. That’ a good idea.
So they won’t charge me till after? I don’t know what they need to see. They said it will take 24 hours to send the final decision and that they have to mail it they cannot email it. I told my hr lady and she was pissed because she was supposed to be notified before me so she could help me with whatever I needed. The freaking case worker even said she knows I can’t work. I mean this such bs. This is all bs. They only focused on the western medicine Drs. I want to give them all Levaquin and cipro and then see what happens to their blood tests.
I knew someone once that was so sick and weak and her weight was down to 80 lbs. she laid on a couch and was so thin that her body conformed to the crack between the cushions. She was turned down for disability. She finally got disability by pretending to be crazy. She eventually did recover. I met a young man once that was perfectly health who was on disability because he was “slow” in his own terms. I told him I bet he could handle a shovel OK to dig ditches and he said, “yeah I could do that.” The difference was he had an attorney. You have to have an attorney to get disability. Try to keep from getting to depressed and keep fighting. don’t give up. If you give up they win.
How do I get an attorney? I don’t have money for one. This system is so fucked up. I have had five attacks with spasms so bad I wanted to die today. I can’t even think straight. I hate all of this. The Drs that did this to me don’t care. No of this is right. I literally have enough money for this months rent and my car payment the rest I have to hope my boyfriend will cover. I will have enough for my co pay to the new neurologist but that’s it. I will have to hope that I can get social security in but that is up to when my dr gets all of the stuff in to me to send. I seriously want to scream. I actually did. This is fucking bs I can pretend to be crazy I just don’t want to but wtf I guess that’s how you get shit these days. I am too chicken to kill myself but I wish I wasn’t. I wish I was braver to just end it. It would save stress for my boyfriend and then it could just be over. I’m just tired. I’m so tired of this of screaming for help and getting punched in the face. I’m waiting to get checked for brain damage. I had to wait this long because my insurance wouldn’t approve and the first neurologist did jack shit for me and was always on vacation. I called his office in tears because the meds he put me on made my hands curl in and so dizzy I couldn’t eat. I’m tired and I have no money for a lawyer.
If you are talking about SS disability they don’t get paid until you do and the amount they collect is controlled by law. I know this is a bitch but you need to calm down. You will be able to think more clearly if you are not freaking out. Please try to meditate. find some good calming music on the internet and put on some headphones. Of course the govt, insurance companies, doctors, etc don’t give a damn about us. They do what makes money. I don’t know what your boyfriend is like but things are more likely to work out if you can calm down. I am the sole support of my family and I am in so much pain and so weak and dizzy everyday for the last several months and I know what it is to feel like killing yourself or worry about being homeless. It does no good to think about that. Think about recovery and live one day at a time. You can do it. And by the way on top of everything else I have the IRS threatening to take my wages. I actually got in touch with someone at the IRS last week who was trying to help me because he was almost floxed and he knew something about it. If you can keep a positive attitude things will work out better. I am telling you this because I know how bad it is and I want you to keep it from getting worse. Hang in there and don’t despair. Expect a miracle.
Well said, Bob!!!!!!!!!!! We ALL needed to hear your ‘Pep’ talk! Anxiety can certainly make your body react in a negative manner. It can definitely make symptoms worse. Hang in there, Stephanie!
Stephanie, This floxing is a disaster both Physically Mentally and Financially. They have named this disease but apparently are still playing games with our lives, I would advise you to look for a Mental Health Clinic in your area that has a sliding scale Fee. It will not only help relax you by speaking to a Therapist it will give you the proof that you need for Disability. I had started Therapy back in 2003, after losing my father in a home invasion, I had a really hard time with that, it helped me so much. I then was Floxed in 2007, not getting the FULL PHYSICAL SIDE EFFECTS UNTILL 2009, I went back to Therapy. I started at the YMCA on a sliding fee scale $5.00 a session and after being Floxed my Therapist retired from the Y but allowed me to continue at her private practice because by then I had started receiving SSI. Please do not allow this to consume you. I had almost given totally up when I found this site, I knew Nothing back in 2009, there was Nothing to be found big shh shh thing. Nobody would talk about because of lawsuits, now that’s its a Mass Tort it’s all out in the open about Tendon Damage and Peripheral Neuropathy….What about all of the other injuries it has caused us ? I know no one ever asked for my Consent to poison me, and I certainly had no Knowledge that that’s what Levequin was going to do to me.The big Pharmaceutical Companies have been poisoning people with FQ,s for over THIRTY YEARS & counting. We must Stop them, any way possible I tell strangers about them and what they WILL DO. Stephanie I wish you all of the best please try to take care of your health, that includes your mental state I know it really messed me up, physically and mentally. Good Luck. May you all have the healthiest day possible for you.
Lisa, if you don’t mind me asking, what “reason” was used to qualify you for SSI? None of my doctors want to put a “NAME” on any of my symptoms. When I remind them of my antibiotics and steroid use, they just look at me with a blank face. I want to make sure I have everything documented properly in my medical files. I am looking for guidance! Thank you!
Bob That is so very true they always turn people down first and sometimes second application, afterwards a Disability Attorney is needed there is NO COST UNTIL IT SETTLES, They can only take a Certain % as well, Stephanie they will also go back to the Original date of Filing, so you will get retroactive pay. They have updated illnesses but being Floxed apparently isn’t one of them. Look for an Attorney that ONLY DOES DISABILTY CASES, They will not accept you unless they Know you will win, they have people there to see if you would be able to do certain jobs, some of us type obviously but it wouldn’t be enough to earn a living . That is what it is Based on, the Ability to do a job over and over again on a daily long term basis. To support yourself and house yourself. Obviously these drugs masked so many injuries, undetectable by tests, the SOB Pharmaceutical Companies are horrific just like these Poisonous Drugs they are STILL giving out like mints. Best of luck to all, may you all be as healthy as possible.
Oh Stephanie. My heart breaks for you. I, too, was turned down for disability. I was down to 80 pounds and could not walk and could barely breathe. My brother, who as also poisoned by Cipro, lost his job of 35 years and was also denied disability. My nephew cannot walk or feel anything from his knees down (he can’t even stand for shoes to touch his feet in the dead of winter), and he was denied disability for 7 years after being Floxed for a kidney infection. He was diabetic and the antibiotics and steriods they put him on almost turned him into a vegetable. He finally found a Neurologist who diagnosed him with Bruns Garland’s Disease. That was the key to his disability. He still cannot walk and floxing was definitely the beginning of his mound of physical disabilities. Apparently, ‘being Flowed’ is not a valid reason for disability. They had to have a medical diagnosis with a ‘label’ that matched their list of valid reasons. Veteran’s can now get disability for being ‘Floxed’ because they are relating it to ‘Gulf War Syndrome”. As civilians, we have not recourse. Do you have a friend that is a RN who could help you refile your paperwork? My x boyfriend got it for PTSD, but his Mom was a nurse and knew exactly what to document and how to word the paperwork. She said that made all the difference in the world, and if he had gone to the SSI department to complete the paperwork, he never would have gotten it. Please don’t think you will be homeless. I don’t know where you live, and I don’t have much; but I will share, and would do my best to keep a roof over your head and make sure you were fed. I’m definitely not the healthiest person on the planet, but I will do my best. We have to stick together!
Well, I just read your post, after reading ChristmasCarla’s to Stephanie…I am in tears. You are both so so sweet. It is remarkable how generous people are on this site and how welcome it is after getting treated so poorly from doctors, hospitals, insurance companies, etc. xoxoxoxoxo
Linda, I am sorry for the reason that we have joined together; however, I am thankful we have found each other, and I no longer feel so alone! HUGS!
Stephanie, I’m not sure where you live, but if you are facing homelessness, you are welcome to come use my guest room until you find your way. I’m in Santa Rosa, California. Right now my guest room is being used by the daughter of an old friend, who was going to be living in her car after her children left home and she could not afford her apartment. She will be staying a month and is now looking into a share rental near here.
In April, my best friend, who lives in Hawaii, will be using the guest room in order to meet with doctors here about her condition, which appears to be major Floxing plus a Traumatic Brain Injury. She has had amazingly inadequate medical care in the Islands, and finally got an appointment at Stanford to analyze her condition. I believe they are doing research on FQT at Stanford, and I am looking forward to sending them information from here.
Not to worry if you need a room before this will be vacant, as I have two extra bedrooms and you will be welcome in the other one, even tho you’ll have to share it with my craft supplies and sewing stuff! This invitation stands any time! hugs to you …
ChristmasCarla, I just want to say YOU ARE SO SWEET!!!!
Sorry. Damn it. Not sooty
Has anyone tested high for vitamin b12? I’m not supplementing, yet my b12 levels were super elevated, and it’s not good. I googled it and causes for elevated levels of b12 without supplementation is liver /kidney failure, or leukemia. I’m freaking out so bad:(
Yes pre flox my b12 was normal. The past two b12 test were about 2000. I read other floxies with similar b12 levels.
My B12 levels were low. I take B12 shots every 3 weeks.
Hi Terry
Do you know why this is? And is your liver /kidneys healthy also?
Thanks:)
I have asked my former doctor and functional doctor. Both weren’t concerned because my liver and kidney numbers were normal. But, I’m still nervous about this.
and this sucks since b12 is supposed to help with nerve damage.
For those of you interested in testing your B12 levels, or anything else, this post is really excellent – http://fluoroquinolonethyroid.com/book_page/what-to-do/testing-on-your-own-when-the-docs-refuse/. Getting calcium levels tested, and looking at parathyroid function, has been mentioned several times lately too. The post can help with those too.
And what kills me is I had the exact same test (urinalysis) requested by an ND. Insurance wouldn’t cover it—but requested by MD and they would. Insanity. thanks for all the info
Thanks Terry
How far out are you ? I’m 15 or 16 months
Aug 28 last day of Cipro and feet pain. Mid October after six days of methyl prednisone for feet, is when the 25+ symptoms of toxicity appeared.
Hi Terry,
I’m 21 months out and my b12 is high, it’s 998, and i don’t supplement with it??
That is borderline high. Mine was double that.
I know, the limit is 946, but it still has me wondering because I don’t supplement it.
I hope more people let you know their levels, maybe it’s just part of this. If so, that would ease your mind.
Normally B12 is utilized by the body and excess is excreted. For some reason the liver is dumping the b12 into the bloodstream.
I never looked it into it, but i think I’m going to and if I find anything out I’ll post it.
In the mean time, if anybody has high b12 levels or if anybody knows if FQ’s affect it and how, we would appreciate your input
WoW those are high levels, I had some really low levels of everything because I slept for so long, I also always had to get B-12 shots anemic, I will let you know after the 12 of April, actually before that I can pick up my reports pre Doctors visit. Will probably scare the crap out of me, but I have you all here to let me know what things mean 🙂 Wishing you all the healthiest days possible for each of your conditions.
Another possibility for the finding of raised B12 levels is the MTHFR genetic defect.
http://www.stopthethyroidmadness.com/mthfr/
jwinn your such a sweet heart ❤ I am sorry the colostrum didn't help you. I tried the Sovereign Labs First it really made me feel so much better, I then tried Prime Life that said all these wonderful things, noticed a difference right away. I researched it extensively and found any Colostrum over 6 hours post calving actually is starting to change into milk, thus the lactose problem. The Immune Tree 6 is Guaranteed to be from the First Milking within that 6 hour time frame. I remember joanneg stating she thought it worked better then Sovereign labs Brand. That is probably the reason. I was feeling so good, then realized why I started feeling crappy again, ran out of Epsom salts.. I ordered 25lbs of it, that should keep me in baths for at least a Month, three day delivery and only $23.75 Free Shipping within three days, Bulk is better then paying $6.00 for a Half gallon container, four baths worth. I will let you all know how the Immune Tree 6 works, The Prime Life I found was 12 hours post calving…It gave me headaches. I gave two bottles of Sovereign s away 😦 Ordered Immune Tree tonight hoping it will get here quickly. Best health to all. PS: Had to cancel my endocrinologist appointment due to Loss in Family, I have to wait again until 3
4/12 for results TWENTY TWO TUBES OF BLOOD along with Urine This Doctor is supposed to be one of the best in Tri State, she was with me for an hour and a half, I waited six hours to see her, defiantly worth the wait, uncomfortable but so worth it.
Thank you, Lisa. I am sending prayers for you and your family. So sorry for your loss. I hope you are able to get good results from your new doctor! You found a Doc who actually listened and wants to make a difference! That is encouraging news! Thank you so much for the interesting information on the Colostrum. I tried the Immune Tree 6 in the powder form. I also have Symbiotics Colostrum Plus in the capsule form, as well. I don’t know much about the quality of the Symbiotics pill form except it says it is only from the first milking, free from pesticides, antibiotics and rBHT hormones. I never really got a chance to try the pills (I got them in pill form mainly for convenience at work), because of my bad reaction to the Immune Tree 6. I am trying to get myself together for when I have Spring Break at the end of the month to try to slowly start taking it again to see how my body will react. It scares me a bit, because I still haven’t recovered from the last reaction…It hit me pretty hard… Although, I am some better. My plan is to take is slow, and try it again. Praying my body will not reject it next time, like it did the first time! Please keep your fingers crossed for me!
Terry and joanneg,
I googled more into it and if glutathione levels are low, it can definitely elevate b12.
Where is Jason? He knows all about this stuff 🙂
NAC and ALA are supposed to help increase glutathione levels. (I also got a push of it with each IV I got)
You can also elevate glutathion levels with Life Wave patches (300%)
Linda, I have been testing my daily supplements with a pendulum before taking what it indicates, and for some time now, it has been giving me a negative reading on taking ALA. It’s always positive on the NAC, and has only been positive on the ALA once or twice a week. Does anyone know why ALA would be counterindicated?
I take NAC and BioAstin Hawaiian Astaxanthin every day. I have no experience with ALA. I would be interested in hearing more about it. ChristmasCarla, I hope and pray that you are feeling better!
Hi there—took me a few minutes to find your post. This site tells about possible contrainications for ALA including kidney and liver problems, and also may interfere with thyroid. I am hypothyroid so perhaps I should not take, but it is good for so many things I am dealing with. What is this pendulum you use? Sounds like muscle testing.
Hi Linda … yes, it is similar to muscle testing. It’s just a way of showing if the substance you are testing will increase your energy or is contraindicated. I have a crystal pendulum that I got from John of God in Brazil. To test something, I hold it in my left hand (receiving hand) and dangle the pendulum from my right hand (sending hand). If the substance is good for increasing my energy, the pendulum will swing out and back, perpendicular to my body. If it is not needed or actually contrary, the pendulum will swing back and forth, across my body. You have to have both hands involved, since it is the energy from one hand to the other that is being tested.
Sometimes, the pendulum will indicate not to take something (like the ALA) several days in a row, then will indicate yes, take it, once in a while. You can test other things than what you are ingesting as well, such as magnetic jewelry, things you might be allergic to, and so on. I believe it is a way for your body to tell you how it will react, since the “brain” in your gut doesn’t have words.
One way I test the pendulum to see if it is actually valid is to put something in my hand that I know is not good for me … try white sugar, or NSAIDs, or anything you know you have a bad reaction to. For me, it always confirms what I suspect.
I have been using a pendulum to scan supplements for quite some time. I can’t take ALA either and i suspect that the acid is bothering my gut. You may find that something that tests negative one day will test positive another day or another time of day. This is a good way to test what brands are best for you for any given supplement.
Never heard of the pendulum. Will look into it.
Terry,
I found this site http://www.yourhealthbase.com/B12overload.htm which talks about stomach issues causing high b12 levels. And FQ’s do mess up our stomachs.
It’s a lot to read, but you can go half way down the page to the case study, which is pretty interesting.
Let this ease your mind, and it also makes sense for floxies.
Sorry, I meant to reply to both Tricia and Terry.
Thanks Joanneg 🙂
I sure hope it’s something as simple as that. I still think I’m really depleted in glutathione though, I might go in for a push soon, see if that helps
Hi Tricia,
Yea, there are probably so many things that can cause elevated b12.
So I would try not to think of the worse case scenarios, because we already have enough stress(24-7) with our other issues. Especially when there are some other less scary explanations that really make sense for our situation.
This is all so overwhelming that I guess this is my way of coping 🙂
Received results from yesterday’s blood tests. B12 has dropped down to 1026 from previous 1939.
That’s great news Terry 🙂
I just got results from my complete metabolic panel, all is “normal range” so I assume my liver/kidneys are ok.
I’m going to get my b12 rechecked also
Terry are you supplementing vitamin b12 or were you ever? I just started supplementing as of yesterday
A little over a year ago B12 was at 507. Floxed in August 2015, but 85% of my symptoms showed up October. Tested in November above 2000. Started taking massive B complex and tested January 2016 at 1939. Numbers went down a little. Stopped massive amounts of B complex and started B complex once a day. Test yesterday dropped to 1026. The only idea that I can think of is that the liver is healing.
Who does your test??? I need to have some test run.
Doctor requested a blood panel of tests.
Can you all hear me screaming from where you are???? More insult to injury. I went to get another copy of the office visit from the neurologist to possibly use in a law suit. Now, this was the nitwit who, in his notes, referred to me as “hysterical” and “delusional” (3 times) –only at the time I got them, around a year ago, I was so out of it, I don’t know what I did with them (it is possible I tore them up in a rage.) Anyhow, I went back to get another copy and I was handed the pages with all the statistical stuff, but no notes. I said I needed the notes. I was refused. I went home. I called the next day and said I had a right to my medical records. They kept saying “you already got a copy.” I offered to pay .25 a page, which I think is the rate in CA. Finally, after several calls, they said it had to be in writing and with a picture ID (interestingly they never asked for the ID when they handed me the other pages). I went BACK to the office, showed my ID, handed them a letter and SASE and said I would file a complaint if I didn’t receive within 15 days (again CA law.) Today I received a certified letter. I thought it was my records. Nope, it was two pages of lies about me harassing office staff, and threatening me with law enforcement, if I called or came by again, and telling me if I wanted the records to mail a request and a check for $35!!! Then he added at the end that my condition had nothing to do with Cipro, and a lawsuit would be frivilous!!!! Well, thank you for your legal opinion, jerk. Just as valuable as your medical one. GRRRRRR. I filed a complaint with the CA medical board.
Everyone here should be on a candida protocol and completely eliminated fruits, wheat, and dairy. Kill the candida, seal your gut, and things will come about in order. That’s what I am doing right now. I cheated this weekend and drank alcohol/ate dairy. You know what? It flared up my cipro symptoms full force. Knee joints started cracking like crazy, achilles heal flare, etc. I’m convinced that we are all suffering an overgrowth of yeast and the faster we can get that under control, the healthier we will be.
This is a big reason why many on here have reported benefits from Colostrum. It does a great job at killing Candida. However that is only one step in the equation. I can’t stress enough how much you need to eliminate fruit/dairy/wheat from your diet, SWEAT in a dry sauna, supplement things like borax/iodine/probiotics/10-undecenoic acid. Let’s face it, the Cipro DESTROYED all of our guts. It is now up to us to rebuild them. Rebuild your guy, rebuild your life. I HIGHLY recommend the following website to follow a good Candida protocol. This man also suffered greatly from Levaquin for over two years. Once he detoxed the candida, he made huge strides forward.
http://maintenancemotions.com/my-candida-approach/
Mark
Have you completely eliminated fruit?
For the time being, yes it’s essential to eliminate fruit. For at least a couple weeks when starting your candida regiment. Over time it’s okay to slowly reintroduce them into your diet but you need to absolutely starve the candida first.
Terry
Do you think your b12 levels were really high because you were deficient? I read that this can happen, especially if glutathione is low, your body cannot absorb b12 efficiently so basically it causes those levels to sky rocket. That’s why it makes sense to me why those levels went down after you supplemented. I have all the symptoms b12 deficiency:( am starting injections tmrw.
I wish I had the answer!
Is anyone in the UK on this site?
I know there have been others from the UK. People don’t always read all the posts. You might try doing a work search on earlier posts.
Thank you
WORD search. sorry
To further my point on Candida, I believe this is a HUGE reason why Floxies are magnesium deficient and STAY THAT WAY until we get rid of it. Candida yeast interferes with the way that magnesium is taken up in your intestine, which causes a bevy of physical problems many of us experience. Freakin fungus, man -__-