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:
For those dealing with pain, this looks like it could be promising. (This particular doctor is in California.) http://www.nbcnews.com/nightly-news/video/can-virtual-reality-sessions-treat-chronic-pain-stanford-doctor-yes-955306563957
Barbara and L: Thank you so much for the responses regarding Ozone Therapy. I am happy to hear that it worked/is working for you. I am very interested in trying it, but am still nervous. I hope you don’t mind that I explore both sides of this and play a little devil’s advocate…
If you read only the first few paragraphs of the Ozone Therapy Wikipedia page, a source I believe to be trustworthy, it mentions death and lawsuits and states that there is no evidence it actually works. This information seems to be prevalent across the internet.
If it is such a miracle, and is helping patients with cancer, etc, why don’t we hear more about it? Surely the FDA can’t keep the so-called cured patients quiet? Wouldn’t they be shouting it from the rooftops?
Furthermore, I looked into its use in other countries such as Germany and found a link called “The Misconception of Ozone Treatment in Germany”, a page that includes this statement: “Being German and living in Germany, I can tell you that ozone therapy in Germany is officially regarded as a bogus treatment. It’s not covered by state mandated health insurance. The claim that it’s standard of care in Germany is unfortunately completely false.” And this was from a page that was SUPPORTIVE of Ozone Therapy.
L – have you met and spoke with the patients that your ND says he has treated with Ozone? Or are you taking his word for it? I’ve seen so many NDs over the years and I’ve learned that a lot of their claims are exaggerated.
Please don’t read this as me being argumentative – I believe your stories and am so happy to hear that Ozone has made a difference for you. I am just trying to approach it from a skeptical perspective, a perspective I *wish* I had before I decided to blindly follow the advice of my doctor and take an FQ. I need to be careful with the treatments I use, as we all do.
Ultimately, I hoping this just provokes some more people to post some positive experiences with Ozone, because for such a miraculous treatment there seems to be SO FEW (why?!) Has anyone else out there had success with it?
I was cautious about ozone at first. I have since gotten 2 prolozone Injections and today got my first ozone injection by an integrative dentist. Germany has its own medical establishment that doesn’t want competition. The fact that it is used so much over there proves people are choosing to use it due to the results. I wouldn’t trust Wikipedia any more than I would trust the FDA. Look up cipro on Wikipedia, I’m sure they think it’s just wonderful.
I think it’s smart of you to ask! Ok, first, I will just say that when I was doing my master’s thesis we were not allowed to cite Wikipedia, because it is not considered a really well respected and researched site. As for the people who got the ozone, I talked to them directly. They were there when I got IVs (The rooms seat anywhere from 1-5 people where I went) and a common topic of conversation involved what we were getting and how it was working. As for the FDA….they are bought by big pharma, and big pharma hates all these naturopathic treatments because they can’t patent them. There is currently a Levaquin lawsuit backeast that names not only Johnson and Johnson as defendents, but the FDA commissioner who approved it. She is charged with racketeering because her husband was heavily invested in J and J stock at the time. The current FDA head of the drug arm had the bulk of his salary while at Duke underwritten by the pharmaceutical industry.
When I was in my early desperate months, the only really kind, concerned regular MD I saw, a rheumatologist, knew I was going to start getting Ivs. I ran the list by her and some she said she thought were fine, some she was unfamiliar with and the H2O2 she said she thought was dangerous. I of course did it anyway because as I mentioned, I was gasping for breath. I don’t blame her because this is how they are trained—pharmaceuticals good/natural treatments-bad. However if you do a little searching online, you will find some more progressive institutions using H2O2 Ivs like Cleveland Clinic. (whatever you do avoid the quackwatch site…I presume it is operated by a shill for big pharma. In fact the term quack dates back to the early days of Rockefeller and his chemical corporation buddies. THey wanted to peddle their chemicals for medicine with no competition, so they gave lots of money to medical schools as long as they ONLY taught chemical treatment and referred to natural treatments as quackery. In the height of hypocrisy, Rockefeller himself apparently used ONLY natural cures.
Right on.
Hi Jason,
Firstly you are COMPLETELY RIGHT to question and be skeptical, shows you have a good brain, and lets not forget you can no longer take chances with your health. I wish I had your attitude “before” I was given cipro and “blindly” took it.
Secondly, “Big Pharma” cannot make any money out of ozone, as it can’t be patented, they hate the fact that it helps people and they can’t make a profit out of it, so they will do all they can to discredit it, generally if people go down the natural route, that’s money they are not making.
I dont know about wikipedia as I have never used them, so cannot comment.
My Ozone Doctor works in a private medical hospital in Alicante. As I said he has been using ozone for 20 years, but no I havn’t met any of his patients, but I see them in the waiting room. I thoroughly researched him and ozone before he treated me as like you, I don’t let anyone medical or natural give me anything unless I have done the research first.
Thirdly, this is not “a miracle cure” I don’t believe there is one, but I do believe in giving yourself the best chance of recovery by using different methods. I have a life now, from being in a wheelchair, having a multitude of symptoms to where I am today. I am not fully recovered, because each week I have really good days and some little bad ones. But in the past year I have flown long haul twice and am planning my third to Vietnam in November. I celebrated my 74th birthday in May and am determined not to let a course of pills beat me. Life is to short.
The methods I used when I found out what had happened to me were,
A protocol of vitamins and minerals from “The floroquine Solution” by the way it is Not the solution, but it had to have helped even though it was not measurable. I spent a fortune and tried so many, so I know that alone was not enough.
Going Gluten, and sugar free, and cutting down on dairy. This helped me loose weight as I had piled on 36lbs after cipro. Also going gluten free is good because it helps with inflamation.
Ozone Autohemotherapy, which for the first time I did notice a difference in terms of energy especially. Also it really helped with burning tingling etc. Again it is not “A Miracle cure” and I can only tell you my experience.
I am presently having accupunture from a Chinese Doctor who trained for seven years, she is in the clinic where my Doctor (Medical) also (Natural) is supervising and knows full well all about fluroquinolones. He used to work in Emergency and would ‘NEVER’ use cipro unless it was a life or death situation. The accupunture is also helping, but again good days and some bad.
Doing my best to stay positive, even though there have been many “dark” days. I try to zone out any negative thoughts, and I “Bloody” wont give up.
I think my point in all this is to say this for me has been a marathon not a sprint, as it is for many of us, (I am 2 years 9 months out) but if I at 74 years now can do it so can you younger ones.
I hope some of this helps and if you need to question further by all means do. We are all different but we can all contribute to helping each other and beating this.
Love and hugs,
Barbara xx
Jason,
I just thought, I should add what I thought made it worse.
Firstly all the Doctors I saw who treated me with contempt, who treated me like I was an idiot. “What did an old lady like me know”? Even though not ONE DOCTOR helped me apart from the Ozone Doc and the Doc in the Chinese clinic that I’m seeing now.I believe they all had a “God Complex” Each time I came away from these so called Doctors my pain would increase, caused by stress and frustration. Not ONE read the information I took with me, one commented that the “internet was the bain of his life. They sure don’t want you to gain knowledge.
Secondly, I had a nerve test which caused a massive flare up of agonising pain. I had just come back from holiday and for the first time in a long time I was starting to feel pretty good. Was it the test ? Seemed to much like a coincidence to me, but others have had the test without a problem. It was very invasive, but the results showed no nerve damage ??
Thirdly it was my own fault but I did nothing about my diet for a long time, so I was eating gluten which causes inflamation. I figured my life was a mess, I was in pain, so sod it I love bread. I did not think it would make a difference but it did when I engaged my brain and went gluten free. It helped with energy and brain fog, and of course my gut.
Any kind of stress is a cause of pain as it releases cortizone in the body.so trying to STOP reading horror stories from other floxies is a given. I dip in and out of this site and the fluroquine solution site now. In the begining I was consumed by it daily searching for a cure. Now I know at this moment in time, people do recover and I prefer to take on that belief, and hope that one day there will be a “Cure” for you all.
Here’s a thought for you ….HOW LONG DOES IT TAKE FOR A BABY TO GIVE UP LEARNING TO WALK AFTER FALLING DOWN HUNDREDS OF TIMES.?
Having myself done 17 years of research & ongoing because of my many horrific experiences with western medicine into big Pharma & all those connected to them.
the conclusion I reached long ago means that I now avoid allopathic medicine like the plague on humanity it is, thats unless I literally have no other choice in the matter i.e. their is no natural effective treatment, or I will literally die without it, one reason among a few is because there is NO such thing as a safe allopathic drug unfortunately prescription or OTC .
This in depth research has also left me with the sorry conclusion that every aspect of allopathic medicine is completely corrupted,& I mean EVERY aspect of it, & unfortunately as far as the drug regulatory agencies go, this sadly ALSO applies to them. As things stand right now, the FDA as far as I am concerned IS Big Pharma .
Therefore, when I do have occasion to visit an allopathic Dr, ALWAYS at the front of my mind is the following : the understanding that I am NOT actually speaking to that Dr .. I AM speaking directly to the pharmaceutical industry. So I will listen to what they have to say, then go home & carry out MY OWN research IN DEPTH.
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2282014
Debs Bloody hell. This is amazing, where did you get this video from? I am circulating it widely.
I agree entirely with all of your comments. I really do. I have lost all faith in allopathic drs. As you and others have said drs just represent Big Pharma and of course have their own financial interests very much at heart.
Thanks for the video it explains a lot.
The history of a subject is often where the truth on a subject, or where clues eventually leading to the truth / or what is closest to the truth can so often be found.
That’s why when I research, i research with an open mind without self censorship BOTH sides of a subject, no matter HOW far out, bizarre or opposite to my own opinion at that time it might be.
I will look into that subject in great depth, including that VERY important history, & I follow it right the way back to the source, or at least as far back as i can go . When I eventually feel I have reach a conclusion from that research, I will then immediately try to prove that conclusion I’ve reached wrong. That way I know I’ve done all I can to reach the most accurate answer at the time .
And having an open mind, if new information comes to light I will be back on that subject like a dog with bone reassessing my conclusion / opinion, unlike our brainwashed allopathic Drs who seem to think for some strange reason that science is not an evolving subject but is static, & who also seem to think that they learned all they need to know at Big Pharmas medical schools, & they do not need to continue to evolve, to learn anymore.
Lots more where that one came from, like this one in case you have not seen it .
Debs,
Thanks for posting these videos. I’ve long suspected that something wasn’t right in recent years and my suspicions have been confirmed by your posts.
These people have a brutal agenda and judging by the millions, perhaps even billions around the world who are suffering from “mysterious” chronic illnesses, I’d say they’re succeeding in their plan.
Luckily, God sees all and He will not stand for this chemical mass murder spree. It won’t be long before Mother Nature takes back control of this world.
Natural World > Chemical World
May somebody help me with a very little problem.
Half a yr before, I was identified as having the candida
I wish to look at some diet against Candida albicans.
In the Internet, a lot of information on this issue.
Although opinions often diverge. And I failed to find the correct selection for me personally.
Maybe the forum participants can propose an established diet or maybe several quality recipes against candida?
I’ll be really thanks for almost any help
Thanks!
Claytonrem,
This is my natural Path’s website and I believe he posted recently about your question.
If you can not find it you can always call him or search his posts. he gives a 10 minute free consult.
http://naturopathic.doctor/#
In the mean time I will look up some more for you and what i tried.
Michael
I just now saw Your question and just wanted to respond by saying that I had that candida stuff and it is a long hard battle along with everything else ongoing. A guy told me to take three or four cloves of garlic and crush them. Let it sit for about ten or fifteen minutes and mix with salsa. Enough to eat in one sitting without getting sick, as it can be harsh on the stomach. I drink a lot of lavender tea and You could mix with fresh shredded ginger filtered through a coffee basket after heating it in a bit of water. Organic sugar or honey with half and half is good, but candida feeds on sugar so You have to watch that. Ginger and lavender is calming and ginger is very good for prevention of sickness while easing the stomach. The more garlic You can intake on a daily basis the better as it kills candida. Also tumeric root is good however You can learn to use it for strength and Vitamin D. Also lemon water is very good for a whole lot of things. By now I hope You have found help and pass this on. I took Levaquin enough to kill a mammoth elephant and suprised I’m still alive at all. Carry on well…
Thanks all for your responses regarding Ozone.
L – you had said that your ND also helped “former” floxies with ozone. Were those people you also met? Also, do you have a source about the Cleveland Clinic using H202? I tried to google it and search for it on their website, and came up with nothing. In fact I found a Cleveland Clinic page where a patient asked about Ozone Therapy and the Cleveland Clinic doctor responded that they don’t recognize it as a treatment because there isn’t enough validating research behind it.
Again, please don’t see this as me being nitpicky and argumentative. I am not denying what you say, I just want to explore this from all angels — and I, personally, just see more negative than good out there. Can the FDA be THAT good at hiding it from us? Sure, maybe in medical journals and online articles, but I just don’t believe that they’d be able to hide true accounts from all the patients who have apparently had success with ozone.
There just seems to be no correlation between the long list of conditions ozone purports to have treated, and the amount of people who have successfully been treated by it. If it is so effective shouldn’t we be hearing more from all of these people? Where are they?
Barbara, being in Europe, do you hear about it often there? It sounds like it is still an alternative treatment, but is it a well known one, like acupuncture? Most people in the US seem to have never heard of it. I wish we knew someone in Germany who could verify, personally, whether or not it is as big as some claim it is in Germany.
Bob, thanks for your note and please keep us posted on your progress with ozone. Did you feel any different after? Better? Worse? The same?
Thanks, Debs…yeah, I’m trying to do my own research too, it is just so difficult knowing what is true…
My daughter is going to the Funational Medicine Clinic at Cleveland Clinic. She was diagnosed with Lyme by doctor Mark Homan who is rather famous. You may have seen him on PBS. The doctor was able to confirm Lyme but my daughter was told they couldn’t treat it or the CDC would “shut them down.” Why, because it has been designed decreed that 2 weeks of antibiotics will “cure” lyme, which it will if you catch it in the first 2 weeks. After that it spreads and changes form and hides in fat and organs where antibiotics don’t reach. But insurance companies dont want to pay for long term treatment. So the CDC covers their backs and tries to shut down doctors that treat it. The FDA and CDC are the enforcement wing of the PharmoMedicalMafia. They want you sick so they can “manage” your symptoms. That was so much as adminted to me by a nurse getting a nutritional IV this week at the clinic where I got prolozone. She worked in oncology in a major hospital but she would not take chemo for breast cancer because she knows the damage it does. 75% of oncologists say they would not take chemo but they will give it to you at $30,000 a bag. Yeah, hard to believe it’s that bad but it is. If you a really progressive doctor they will come after you. Doctors using ozone was the to keep a low profile.
Yes, it is truly abhorrent. Sadly, corporations are running pretty much everything these days. My new MD is integrative and a Lyme specialist. Thankfully there are people out there who take their oath to heal seriously.
That’s Dr. Mark Hyman.
Question for Lisa: I believe I remember you taking kratom for pain in the past. How did thathe work out for you?
Hi Bob,
I think it helped a bit. I wouldn’t call it a strong painkiller, but it helped with the pelvic pain I was experiencing. Some floxies have said that it helped them immensely. I wouldn’t say that was my personal experience, but I think that it helped as much as an OTC painkiller would have, but maybe with fewer side-effects.
Regards,
Lisa
Some peoplevel have reported story stomach problems with kratom. Did you have any and what dose did you take?
Are any of you folks taking probiotics to speed up healing of the digestive system or are these a waste of time and money? I’ve taken probiotics sporadically in the last 2.5 years. I’ve no idea if they have helped me in any capacity but then again, I’ve never been consistent with them.
There’s reports and studies out there that claim they are a fundamental part to gastrointestinal health, while other reports and studies state no positive impact.
Which to believe?
I’ve been taking a brand that contains 11 Billion + Live Active Whole Cells. It consists of 11 strains: 4 Human / 1 Plant / 6 Dairy (veg. capsule form).
What’s the outlook like on probiotics? Should we be taking them? Are they an integral part to recovery from FQT or do they have little to no effect?
I make my own yoghurt & have done so for many years, & I do eat a great deal of it.
I eat it 3 times daily at least with my meals, & often will eat more.
I am convinced that this has certainly helped protect my micro-biome.
Considering the amount of times I’ve been floxed & the damage I suffered, the fact that even after my 7th floxing I have still improved a hell of a lot from my worst in many ways . I personally feel I would right now be be rather worse off, maybe not so improved If i had not been doing this consistently.
Debs,
Thanks for your feedback. I’ve done the kefir route but being lactose intolerant, it doesn’t sit too well with me. I used to be a heavy consumer of milk and I think that caused my intolerance. It’s not bad, but I prefer to steer clear of all dairy products these days.
Happy to hear that homemade yogurt has helped you a great deal.
That is to say, all dietary products. The capsuled probiotics give me no trouble.
Lukasz – I have been eating cashew-based yogurt made by a company called Forager. It’s surprisingly tasty and it uses probiotic cultures just like the milk yogurts. If you have access to it, you may want to try it. I’m a fan.
also cultured sauerkraut is good for probiotics. I have trouble with dairy too but I find that goats milk kefir (plain otherwise too much sugar) agrees with me and is also very good
Lukasz – I tried lots of probiotics and finally found one I like. Prescript Assist includes lots of unique strains of soil based probiotics not found in main stream products. I also have used two food based probiotics successfully Gut Shot which is a liquid made from cabbage with other elements. The original works best for me. And finally good old Kimchi. I like it and it has lots of bioavailable probiotics.
Lisa,
I looked it up and it’s something I would definitely be interested in picking up. Sadly, accessibility to products like these are very limited here in Canada, often none existent. I’ll check some of the health food stores anyway. Thanks for the suggestion.
L,
I’ve had kefir off and on since this all began. Doesn’t give me a lot of trouble but I’d still prefer a dairy-free alternative. Thanks for weighing in.
AColeman,
I’ve also consumed kimchi for a while. I really like it and yes, you’re right. It has many health benefits including that of being a good probiotic source. Cheers.
I received Cipro qnd Flagyl in a combo iv for diverticulitis. Six weeks later I had a colonoscopy. My gastroenterologist prescribed a probiotic but I was a bit sporadic about taking it as I started to suffer from acid reflux which was new for me. I blamed the probiotic but now I’m pretty sure it was a floxing symptom . After the one pill of Cipro for a suspected UTI when I finally found out about being floxed I started taking the probiotic every day. My guts work better than they used to do ( though I rarely became constipated except when travelling) and I do not get as many diverticular twinges. The acid reflux has more or less gone. I also take aloe vera juice most days. It does not taste that good so I mix it with a little cranberry juice.
Madge,
Thanks for sharing. I also find myself to be less constipated when using probiotics. Think I might stick with them.
Madge, raw almonds helped me with bad heartburn and stopped it in its tracks. I don’t know if they’ll help as well if it’s acid reflux, but it may be worth a try.
Thanks Pam- I will try them if it comes back. On the whole my digestion is ok now though I have had to restrict my diet due to the diverticulitis.
Hi Madge,
There is no ryhm or reason to this as I have read so many people don’t get constipated after taking a probiotic. I had to stop because after trying several different ones, 50,000,000 and up to 14 strains I GOT constipated. Hmmmmm???
That’s a drag. Do you feel your gut has recovered anyway since being zapoed by the FQ? Iread a comparitive study of antibiotics on microbiome disruption and FQs were the worst culprits.
Lukasz it all depends where you buy them, and if they are dead or live cultures. The quicker you can get them the better. If you buy them from a store sometime the cultures are already dead. Also prebiotics are good to take along with probiotics to help them along.
Here is Doctor Axe’s article on the matter.
https://draxe.com/probiotics-benefits-foods-supplements/
Michael
Michael,
Yeah, whether the probiotics are alive and well has always been a concern of mine. Like you said, we could easily be picking up dead bacteria which is of no use. I guess probiotics found in fermented foods will always triumph over encapsulated probiotics.
Hi Lukasz,
One thing that was recommended to me to help build up a healthy gut is an enteric coated probiotic capsule, which allows the probiotic to make it through the stomach acid and into the intestines without having a lot of it killed off.
Thanks for the ideas on skin health, too!
Hey everyone. I just saw this posted on facebook and thought it would be of interest to those of you dealing with pain issues. http://herb.co/2017/02/23/cannabis-pain-patch/
What the hell…..the back of my hands look like they have aged 20 years in the past 2 months. Over 2 years after taking Cipro. Crazy timeline. Does this skin thing ever get better?
Kurt, I’m having the same thing with lots of crepey skin 14 months after taking Cipro. I’m curious if anyone found a way to help the skin recover from this…
Sorry to hear that Pam. Hoping that this issue gets better with time…
Kurt and Pam,
Vitamin C is probably your best bet for skin-related issues.
There are people who claim that Apple Cider Vinegar is beneficial too.
Thanks for the info!
Hello everyone,
I just wanted to update you as to my condition. As many of you know me on facebook. I was recently diagnosed with Adult Autoimmune Enteropathy and it is a rare autoimmune condition that attacks your small intestines. I have been dealing with malabsorption and dehydration and severe weight loss and extreme pain. This all happened after I was floxed over 5 years ago. I took both levaquin and Cipro. It first attacked my brain and joints then tendons and eventually my guts. I have seen experts at Cleveland Clinic and Lansing and Grand Rapids Michigan and now the University of Michigan in Ann Arbor. I have been hospitalized quite a few times. My biopsies have been sent to many places such as the Mayo Clinic and Chop.
A few Doctors think this is connected with Cipro which we know it is. If the Cipro does it at the cell level or if it causes an autoimmune response. All I know is my body is not healing.
I am on Prednisone and Entocort and now they have me on Tacrolimus to try to stop my immune system from attacking my intestines.
I am just taking one day at a time and focusing on my recovery have to let everything else go. You can not focus on what you can’t do and focus on what you can.
Anyway hang in there everyone.
Michael Teeter
Michael, What I began doing quickly after all the joint pain, muscle spasms and twitching began was to make liposomal Vitamin C. It’s easy if you have the time, and it helped me to slow down all the roving joint pain that would hit a different set of joints every few days. My cousin explained it to me like this: Your immune system is detecting an enemy that has settled in your soft tissues (your joints) and is sending out white blood cells to attack that foreign body, but it starts attacking your joint tissue too. The Vit. C, along with lots of magnesium, chlorella, and boron that appears to help get the fluoride out of your system, really helped to slow the progression. I’ve also been taking a probiotic that is enteric coated so it makes it through the stomach acid all the way down to the intestines. I’m 14 months out and don’t have nearly as much of the joint pain I had a year ago! Whew! This is scary stuff. I hope some of this might help you, too!
I am just extremely enraged whenever I stop in here to see So many more Newly Floxed People , I am Ten Years out ….. 3/19/2007 I can say I had a horrible first few years, because I had absolutely No Idea what was happening to me, Lawyers were telling their Clients Not To say anything……I was given 750 mg of Levequin for ten days, I actually didn’t associate it with any of the “Symptoms” I was having Tremors, horrible nightmares and especially unbearable pain in my left shoulder that way back in 2010 , I believe this hits you the hardest after you completely Stop taking it, I took it six separate time prior to ANY WARNINGS. I worked out 5-6 days weekly and walked miles afterwards. I had lost 70 lbs and was planning on having knee surgery to repair an old injury that had gotten worse, thus the dedication of losing weight and getting strong. I finally saw an advertisement in 2011 about tendon tears and to call an Attorney, long story short I was taken on as a Client and after 3 years dropped as soon as it turned into a Class Action Suit. The less clients the more they make, I was told ” I was to young to have tendon Tears,” by this time the Brain Fog was starting to hit me badly, the depersonalization , the chronic Fatigue it was to a point I could no longer drive because I would ACTUALLY FALL ASLEEP WHILE DRIVING. I pretty much slept for Three years , aware of what was happening in my surroundings but as if watching my LIFE through a Camera lens. I did what I had to do, pay bills and feed my dog and cats, I even kept up on housework somewhat, except for the PAPERWORK 😦 From what I have learned through this entire process is everyone is DIFFERENT, some thing may help one of us and do nothing for someone else. I totally agree with the magnesium, and essential Vitamins especially C , E D A and several others, I was Deficient in almost every Vitamin we have…. I had a Thyroid issue which has since straightened itself out , how I don’t know, perhaps I am finally getting what I need for my body to function as well as possible. I Do have severe Endocrine issues I believe it was because of my non existent eating habits of which consisted of mostly Juices and water, I had absolutely No Hunger what so ever and ten years Out I am just beginning to feel Hunger Pangs slightly , I KNOW I was hurt so much worse then I should have been because I had absolutely no information about this at all, until 2011 and still nothing really helped ME, again I was in a terrible Brain Fog. I Thank God for finding this website and for Lisa’s selfless act of documenting her own journey because I actually really started healing only 17 Moths ago, yeah Fifteen Months ago, after over 8 plus years of suffering, and fighting with Doctors, thinking I was absolutely Crazy out of my mind. Thank you Lisa for everything. I became an everyday searcher, thanking as always joanneg and Linda or L for all of their suggestions, I popped in a few weeks back to inform you all of an accidental discovery that really took A LOT of the Neuropathy Pain Away, its been ( Brain Fog again ) at least eight weeks and amazingly the pain Hasn’t Come back ? This Biotin is made with Coconut oil and also contains magnesium and SILICA ( something I have always thought was poisonous because of those little gel packets that say Do Not Eat ! ) apparently that is because its a gel and if moistened could cause a chocking hazard , who would of thought We actually have Silica in our Bodies already and its main job is to Help rebuild Connective Tissues and Keep the nervous System healthy …. I took a few capsules and chewed them wanting as much as possible to get into my blood stream sublingually though the insides of my cheeks, I was like a Crazed person, a child in a candy store a monkey with bananas, I was completely UNABLE to STOP eating these Capsules, I actually had to go put them up in another room up high as far away as possible, that is how much MY BODY WANTED TO INGEST THESE CAPSULES. apparently I am/ was excessively deficient in Biotin ( Vitamin H its called ) and also I am thinking Silica , these are two supplements/ vitamins that I have NEVER been tested for as far as I know in my Life. I get complete bloodwork ( 24) Tubes Every Six Months for the past two years. It has also relieved a lot of my shoulder pain ( Torn Tendons in both ) knee pain and my hair skin and nails are growing like crazy. I also take unflavored Collagen Peptide powdered each morning and later during the day something called GREEN FOOD , its a powder also because I am still not eating correctly that generally is just ME trying to get as much vitamins back into my system as possible it consists of a Food Blend all greens ,antioxidant blend EPA Fiber Blend ( Flax Seed & Apple pectin ) and a Digestive blend of enzymes and pre & Pro biotic Blend , all of this in a glass of 8oz water or a smoothie up to three times a day, I also take my Life Changing Colostrum LD ( thank you joanneg) which is what Actually brought me back from what I thought was the end of me. I apologize for taking up so much space ,I just wanted to Share with you all . I also want you all to KNOW THAT I AM NOT A DOCTOR, I AM NOT ASSOCIATED WITH ANY COMPANIES SELLING ANY OF THESE PRODICTS I HAVE MENTIONED , I ONLY KNOW these have helped me more then I have could EVER EXPECTED , being that I was poisoned over Ten Years ago. My Only Hope is that these products may help you to heal as much as possible, praying they ever heal you completely being these effects are hitting Now, hoping you can get a head start on them and wipe them out. I would also like to take another minute of your time and mention a man who also helped me Tremendously , a Doctor who had been injured himself by these terrible Drugs, and fought So hard for all Floxies Dr J.S Cohen who tragically passed away Two years ago this past December. He was a pioneer into this uncharted World, exposing exactly what WOULD HAPPEN TO EACH OF US , Not what MIGHT HAPPEN. His book is my Bible , I read it over & over & over again and I always seem to discover something I had missed ? Its called HOW WE CAN HALT THE CIPRO AND LEVEQUIN CATASTROPHE. The Worst Medication Disaster In U.S History. How to Protect Yourself and Your Family From the Massive Overuse of the Six Antibiotics That Can Destroy Your Life. JAY S. COHEN, MD Critically acclaimed Author of Over Dose The Case Against the Drug Companies. I would highly recommend this book to Anyone floxed or not, it has several peoples documented journeys throughout, showing how these drugs actually change our DNA ! Thankfully these have been Pulled off of the Prescribing Go To List , but we ALL need to be vigilant , because there were SEVERAL WARNINGS THAT THE FDA HAD PUT OUT and DOCTORS just Ignored them ! That first 750 mg of Levequin I took, was ALREADY KNOWN to cause Neuropathy FORTY YEARS BEFOR I INGESTED IT ! I am as I said Ten Years out and had more Doctors paid attention to their patients and Read the Updated Side Effects of these Six Drugs, they could have saved So many people from going through this Nightmare . I still tell anyone who will listen, post on Social Media even though these cant be given unless ITS a LIFE OR DEATH SITUATION. I have said it before and I will say it again, had I not begun to Finally start feeling somewhat normal again, I certainly would have taken My Chances with a Sinus Infection. I am certain it would have cleared on its own . Ooops 1 more thing oil of Oregano and a Good Pro biotic will clear up most Viral, bacterial and or Fungal infections NATURALLY WITH NO HARMFUL SIDE EFFECTS Unless your Allergic to Oregano. Just Start taking it as soon as you feel as if your getting a cold or virus. I discovered it by researching naturally healing No Side effects about Five years ago, it cleared up a sinus infection completely within 5 days, just take it with food, or belching is unpleasant, and not before sleep, Its like eating pizza before bed Ugggh.I have So much more I want to share, and I will how to clean out lymph nodes etc . all naturally. No side effects KNOWN. Allergies are Here and Borage Tea is the Best, I have been using it for several years I start drinking it in April and I have absolutely no allergies to the Trees or Flowers, I started late this year, well lots of rain in NJ , and I have a massive Pressure Headache, so I’m going to have a cup and look up if it contains Fluoride or not, that’s another thing, Fluoride from the earth or Fluorine a known carcigen that’s a by product of other chemicals, Bio Hazard that should have to be carted away and disposed of properly, instead our idiotic States Towns Pay for the crap to be put into our water Supply, its Good for Us ?? No It IS POISON. Hoping and Praying for Each Of YOU to Get as Close to Perfect Health As Possible, Because It is Possible ❤ NEVER EVER GIVE UP HOPE 🙂 Always keep searching ………..
Hey Michael,
Your situation sounds a lot like mine. Even though I never received a proper diagnosis (and at this point I don’t care to since I know what Cipro and Clarithromycin does to the body and its’ organs), I’m certain that I have a similar if not exact condition as you since I experienced and continue to experience the same issues that you described. I lost a lot of weight since this all began and have been having trouble putting it back on. It’s as though my digestive system is broken down and cannot absorb/process food. It’s brutal since disease loves an environment that is acidic and having organs that are unable to perform their jobs is more of an uphill battle. These brutal drugs also attacked my brain first. It’s been 2 1/2 years and I’m just now starting to come around mentally, though I sometimes wonder if my brain will ever be 100% recovered.
These drugs should be nicknamed the ‘Life Destroyers’ because that’s precisely what they do to people’s lives.
I refuse to give up though. Like you said, all we can do is take it one day at a time and hope for the best down the road.
I just wanted to say I like you am Ten years out, I still have severe Gut issues no signals to use the toilet. I have gained weight which is opposite of everyone else it seems, I initially lost but I was working out 6 days weekly & walking 2 MILES DAILY. I just wanted to ask if you have tried using Colostrum LD, that helped me immensely, been using it for 17 months, I still have issues, I am So very very Sorry you are going through this horrible ordeal. There are absolutely No tests to show we have been Poisoned. I on the other hand had a FULL BODY SCAN six months before taking Levequin. I was petrified of getting Cancer, because I was losing my sister to it, My Doctor ordered this Test to show and Assure me that I did Not have any Type of metastatic Diseases. It showed my back issues and knee issues nothing with ANYTHING ELSE. I am hoping this will be a Break through that will Actually Prove what these Drugs WILL DO not may do and How devastating they are to the Human Body. Michael have you read about or heard about something called Stool Implants ? This is something that has been happening for I would think at least 2-5 years ( Brain Fog have time period issues) But So many people were actually helped using this procedure , they have extremely healthy Screened individuals Donate their Stools which are then put through a process that makes them into a viable way to transplant into the ill person, they have been using this initially for people with Severe weight loss due to Colitis Chrons several types of GUT RELATED ISSUES that have left people unable to Heal their Own Gut themselves by no matter what Means they have tried, I am serious about this, and from what you have written it seems your situation is dire, taking medications as you know to well only aggravates the situation. PLEASE PLEASE PLEASE get in touch with a Teaching Hospital I believe it was in Boston and ask about this. It is becoming a pretty standard procedure and is as easy as getting a colonoscopy in and out same day, and ALL the people who received these transplants have MADE Complete Recoveries , Michael Please ask about this new innovative procedure, it just may save your life , living day by day wondering has to be so very hard for you. I wish you the best of Health, I just Know I stopped in here so very early for a reason, and I believe it was to tell you about this. God Bless and Praying for your Healing.
Hi Lisa M, can you post exactly which biotin supplement you are taking? I would like to try it, and thank you for letting us know how you’re doing 🙂
Yeah right. Please stop scamming people
Jay Allen,
Take your bullshit testimony elsewhere. Nobody here cares to be scammed out of their hard earned money.
You should be ashamed of yourself.
One of the things that scares me most is that I find so few descriptions that seem to reflect my experience. 7-8 months in, whenever a drug causes a reaction (I was given a antidepressent 5 months in that reacts with levofloxacin, even after I warned the doctor not to prescribe anything with such a reaction- I was not allowed access to google when given the drug- since then other drugs that interact with the antidepressant but not levofloxacin cause levofloxacin reactions, even a month after I stopped taking the antidepressent!) Localized areas of my connective tissue become highly fragile and prone to injury- to the point where using stairs or speaking can cause an injury- over a couple of months, the fragility goes away, but any injuries incurred while it was present linger, and can re-injure even months after they stopped being noticeable- the ones in my hamstrings feel like they could be permanent..
I have very little pain or inflammation- the pain only comes when I injure a locally weakened area by trying to use it normally. I’ve had minimal problems with noise sensitivity and coldness in my feet and hands- but this has never lasted more than a month.
My only real problem is connective tissue damage. When it initially weakens an area (knees, feet, groin) it feels hyper fluid and like the region is hardly there at all. I can feel the initial reaction happening, it feels like the area is spasming, vibrating, pumping something through the local area- afterwards the area is just weak,and fragile. Does anyone have any insight to offer/ a similar physical experience? I’m hoping for some kind of reference in what I can expect
* I should clarify, when a weakened area is used and injures, it can get inflamed, but it’s not the huge immobile swelling out of nowhere other people describe, The local tendon just gets really weak and sensitive.
I have a question about prevention and not sure if this is the right place to ask. I am on the 3rd day of 5 day Levofloxacin for kidney infection. The Fluoroquinolone Toxicity Solution ebook seems to have so much good common sense health info that anyone could benefit from. I’m already gluten/dairy free, very little sugar, etc. Would there be benefit from trying to follow the protocol for a month or so after I take the last pill, to help deal with any dna damage that might occur? Does damage always occur or just for the people who start getting all these painful health issues. I know it can show up months later. Just curious. I’m 61. I had to take it 2 years ago for a kidney infection and am very grateful no problems that time. This time when my dr. was going to give me Levofloxacin for kidney infection I asked for an alternative. I was amazed she said ok and prescribed Sulfamethoxazole. But my fever went up for 2 days & didn’t get better. I had fear of hurting my kidneys and when she thought Levofloxacin would definitely help, I went for it out of fear. I am finally feeling better, although still very tired.
If it were I, I’d ask for an alternative ASAP. There must be other antibiotics you can try that aren’t in the Fluoroquinolone family. Of course kidney infection must be treated by abx, but Levaquin can ruin your life.
Hi Ellen,
In this post you will find some supplement suggestions that might mitigate the harm from FQs. https://floxiehope.com/2016/02/25/mitigating-fluoroquinolone-damage/. I hope that helps!
Regards,
Lisa
Thanks so much for the information Lisa! I need to re-read it to get it all, but on the medical paperwork that comes with this horrendous drug, it didn’t say you couldn’t take magnesium, calcium, etc., it just said that less than 2 hours before or after this drug. So maybe tonight I will start taking a dose of magnesium, because it will be hours away from my pill. I will also look into NAC.
A couple suggestions from dr jay cohens book would be to take magnesium 4 hours away from the Levi ( I know it says don’t take mag but mag depletion is a huge reason for so many problems. Oh you take it 4 hours away it shouldn’t interfere also supplement with vitamin e. If it were me I would request a non-fluoroquinolone. Typing on a small phone so sorry about typis
Thanks for your suggestions! I will look into Jay Cohens book and info re: Vit. E and also magnesium.
Yes, I regret responding from fear. It’s just that the 1st alternative didn’t work, so I ended up having fever for at least 4 days, going up to 103. Just didn’t want to risk damaging my kidneys, by “trying out” another one that may not work. That’s why I’m trying to find out if following as much of the Fluoroquinolone Toxicity Solution ebook right away for a couple of months, could minimize possible problems. I send out healing thoughts and prayers to all who are going through this.
Ellen The dr should have done a microbiological test to see which antibiotic your uti is sensitive to.
Hello everyone. I am thinking about going to a herbalist but am thinking about homeopathic treatment too. I have booked an appointment for next week. I don’t know which one will be more relevant and beneficial to my cause. I hate living like this.
I hear you. I actually saw dramatic improvement with an ND (Dr of naturopathy and IV treatment which was very expensive…but what is the alternative. I did also get some help from an acupuncturist who also used Chinese Herbal Medicine. I was not even able to use the latter though until the former got me well enough to move around on my own.
Lisa, have you seen this? I found it on Amazon recently–talk about outdated dogma.
GRRRRRRRRRRRRRRRR
I tried to leave a comment on the book but it would not submit.
This beggars belief. I have left a review and submitted it, but I dont know if it will be accepted or not.
I went to amazon and found it and wrote this (which is being reviewed): “This is dangerous information. Cipro is a failed chemo drug. Even the FDA after much outcry stated it should NOT be used for UTIs and other simple infections. More than 300,000 people have died and millions more have had their lives devastated from this class of drugs that destroy DNA, mitochondria, collagen, bone…wreak havoc on all systems and organs. There is NO CURE if you are injured, and side effects are thought to be cumulative, so even if you have used Cipro before, it does NOT mean you are safe to use it again. The author of this book is not only doing a great disservice to the public but may be putting himself in legal jeopardy.” I encourage others to do the same. (There was already another one star review. Too bad you can’t do zero stars.)
I noticed too that if you do a search, the book directly below is Dr Jay Cohen’s “How We Can Halt The Cipro & Levaquin Catastrophe: The Worst Medication Disaster In U.S. HistoryOct 25, 2015” 🙂
L…that one star was me. I have sent a copy to Lisa. They accepted my review, I only wrote…this stuff is poison, take it at your peril. It devastates lives. I didn’t write more because I did not think they would accept it. So hopefully lots of floxies will also write a review. It’s disgusting how someone is making money out of thus crap.
They wouldn’t post mine! I got this: “Your review could not be posted.
Thanks for submitting a customer review on Amazon. Your review could not be posted to the website in its current form. While we appreciate your time and comments, reviews must adhere to the following guidelines:
http://www.amazon.com/review-guidelines“
L….I think you have to choose your words and also title. Thats why I kept mine short. But also the title was …..devastated lives. Somehow they didn’t pick it up. Try again, read mine and try to do the same sort of vein. Good luck xx
Sorry….the title was called ….The destruction of peoples lives.xx
Hello everyone! My name is Heather, I am a 29 year old very active travel ER nurse. I received a script for Cipro for a kidney infection almost a week ago. On June 13,14 and 15 I took 500 mg twice a day. I was not informed that there were concerns regarding tendonitis from the PA or the Pharmacist who filled my script. In any event…I ran 4 miles on the 13th (my 29th bday) and 4 miles on the 14th. I developed Achilles tendon pain in my left leg. I was also having some insomnia and headaches. The next day I realized that my tendons were hurting badly, a run half marathons and salsa dance regularly and have never had any pain. I researched cipro and was horrified with what I found. I discontinued it immediately. Since the 15th I have slowly developed inflamed tendons. My neck and shoulders are hurting, lower back and hands. I am currently at work in the ER and my neck is burning. I have been reading articles and just ordered $211 worth of supplements to try to combat this. Does anyone have any advice for me? Should I not exercise anymore? I am extremely active and exercise is my life!!! 😦 I am supposed to work a nursing contract in the virgin islands starting July 31st. What should I do? Please help!!
– Heather
I was floxed 4 years ago aND have been through it all. I don’t know what you think about homeopathy but when I have used it for years. When I was floxed I heard there was a homeopathic cipro but I could not find it. Just recently I found a doctor in CA that has it, Dr. Mueller at Homeopathic Associates. He said if I had gotten it soon after taking the cipro it could have potentially recovered quickly. There was one post I saw that said it helped them. They take cases over the phone. In the mean time I would start taking magnesium and calcium. Cipro depletes magnesium massively and calcium chelates cipro. Your body cant stand any extra stress I would definitely stop exercising for now. I thought I was recorded eyed 6 months after floxing climbed up on a roof and relapsed. Find an ND who can give you nutritionall IV’s. Try not to panic but it will take awhile to recover. Take Epson salts baths but don’t get the water too hot. Believe me it could be worse. I think you will be OK but stop pushing your body. IT needs rest. Check out Dr. Mueller. He does a free conference call.
I would stop exercising, load up on probiotics, magnesium, vitamin E and avoid fluoride and GMOS, gluten, anything nonorganic, esp meats that could contain antibiotics. There are many good posts regarding what helps, if you scroll back. For me personally, the lifesavers were nutrient IVs (high dose vitamin C, H2O2, Meyers and phosphatidylcholine and glutathione. Others have been helped by ozone therapy. I also, over a year later, had prolozone injections in both knees because of torn menisucus. Sadly, the fluoroquinolones eat through all connective tissue. The Achilles seem to be especially vulnerable.
We have all been in your situation. I had to stop performing because body wide side effects from Cipro. These drugs are incredibly toxic, and it’s not just connective tissue. They can affect every organ and body system. The good news is, you learned rather quickly what was going on. There is a book by a doctor who passed away last year, dr Jay Cohen: “How We Can Halt the Cipro and Levaquin Catastrophe: The Worst Medication Disaster in US History,” that you might want to get (online). He covers all the supplements he believes help.
Like Bob I recommend you find a good ND that does IVs (or integrative doctor…I actually have found both.) I am afraid most allopaths will not be very helpful.
Take magnesium supplements, the topical spray helps tremendously and soak in magnesium baths. Avoid ALL pharms, nsaids, and steroids which will make you way worse!! I use all forms of magnesium, probiotics and colostrum. I’ve tried many supplements, these are the ones that seem to give “me” the most help. Everyone seems to respond differently from supplements. But the majority are helped the most from magnesium. Good luck, I certainly hope you have a mild reaction. And never take this class of antibiotic ever again.
Hi floxie community,
I am going into my 6th yr post flox. I consider myself somewhat of a veteran, but at the same time I really can’t call myself a veteran because I really don’t have any insightful, life changing tips for new people who have been damaged. I have no experience at getting better, so I’ll just say my body has not been the same for a long time. The only wisdom I have for the unfortunate new people who have been harmed is that this affects collagen production. Yup, six years later, hundreds, if not thousands of posts read, this is my conclusion. The floaters in my vision, my changed physical appearance, the changing skin, joints and tendons that hurt the sensitivity to the sun, and many, many more symptoms–it’s all collagen related. I was floxed at 33, I was very plump, full, strong, and my collagen levels, if there is even any such thing as that, were pretty high. I am now 38 and lie and say I’m 43 when asked because it’s embarrassing to be going through what I am going through and only be 38. It makes me kind of angry, which is why I am posting today, as a kind of therapeutic activity. For me, there is no getting better, I’ve learned the human body cannot replenish collagen lost, if we were we would never look old, and we all do get old. Unfortunately, Fluoroquinolones have managed to help me get old quicker. I’ve taken the magnesium, multivitamins, whey protein, juice concoctions, soaked in the ocean, drank tea, drank all the water, cut all the sugar I could. Sometimes in isolation, sometimes all at the same time. Nothing has worked.
My only advice is keep living life, don’t get down. Today I am down, but in a couple of hours my kids will come home and I will fake that dad is o.k. and after faking it for a couple of hours, I almost believe I’m better, until new symptoms come up or the old ones kick in. Keep taking supplements because supplements give hope. I didn’t improve with supplements. I keep coming back to this forum and read through posts because I hold hope someone will find the answer or the magic cure and post it. Thank you for those who post and do it in the name of helping and providing hope for all of us.
There was a post a few days ago about some some one that took 9 years to recover. Don’t give up. After 4 yearsI can barely walk but I am not giving up.
Bob, just to let you know I was in a wheelchair for 3 months unable to walk, but I can now. I went shopping yesterday with a friend and although after a few hours I was pooped, I walked all that time. So glad your not giving up xx
I had dental work in Oct that sent me back to square one except for my feet which are worse than ever. I did 4 prolozone shots but so far that hasn’t worked. I did an IV today and I was telling the nurse about cipro and the room the light bulbs started going on in the room of people that were floxed and had not made the connection, including the nurse whose husband and 10 year old daughter was floxed and is still limping. This madness needs to stop. If anyone knows a good hacker there is a certain corporation’s bank account (whose name begins with B) that I would like to hack.
OH yeah, Bob. I want to see Bayer hauled into court for all the people whose lives they have wrecked. And then I want them to pay for all of us to get stem cell therapy. Heartless, capitalistic vultures.
I had some dental work done and no problems. (I assume yours was from the anesthetic?) My holistic DDS has advised me to have all my amalgams removed, for the mercury, which I will likely do…but then that’s thousands more money to replace them. ugh. BTW really interesting video online called “smoking tooth” about the release of mercury. Of course you have to have it removed by someone qualified. The gold standard for holistic dentists is Huggins trained.
I have “smoking teeth” on tape. I found a great dentist who uses ozone and wears a hazmat suite when he takes out almalgams.
Yeah my guy uses the hazmat suit too. I think I will wait and just be “put out” and have them all done at once. Can’t stand to have anything over my mouth of nose.
Yes John, you are so right. These toxins damage all connective tissue. The purported reason for the floaters is that it attacks the vitreous gel, just as it attacks collagen. I had floaters and so many little black “dots” (another type of floater I believe) that at times it was like looking through gauze. It really screwed up my very good vision in one eye. One thing that DID help some was L-carnitine drops. IT’s a hassle—-4 x a day for a YEAR, but it did make a difference in terms of size and number of floaters.
While I don’t know of anything to help repair collagen (I keep trying different supplements) I again do urge you to try nutrient IVs for any other problems you are experiencing. Glad you have your kids to keep you sane.
NAC eye drops…sorry
Hi John,
Really sorry to hear how you are. It’s horrendous how you have suffered so much like so many others. I get really angry when I read posts like yours. There’s no accountability and it’s so unjust. The thing is John its really hard to know what helps, I didn’t feel that suppliments helped either, but I dont know what I would have been like without them, thats the problem. I did think ozone therapy helped, and also gluten sugar and mostly dairy free because I was the opposite to you I piled on the weight after being floxed. I have lost 22lbs so far and do feel much better. Less fatique, brain fog, depression etc. I am 29 months in and apart from burning pain heavy legs from the knees down I feel I have a life. This whole flox thing is a mystery as it effects us all in so many different ways. For instance why does the pain I have stop at my knees ?? Some think its because it’s crossed the brain blood barrier, who the heck knows. Bone broth is supposed to help with collagen, please don’t give up because no one knows much about this even now, which makes it important for you to believe you can get better anytime. Some have got better after 9 years, others 9 months. I try to focus on the good bits inbetween the bad, it doesn’t always work, but mostly it does. I think one of the worst things about this is it’s hidden, so it’s not like a broken leg, something people can see and understand. Unlike you I look younger than my 74 years and I am frequently told how good I look grrrrrrrrrr. No one would know what I am feeling, because they can’t see it. Anyway John, just wanted to say your young you have lovely kids, so hang in there keep going and one day anytime…..who knows you will fully recover. Big Hugs Barbara
Hi Barbara- know what you mean about it not being visible. I inherited very good skin which I have looked after, so consistently looked 15/20 years younger than my chronological age till floxed. Even now with the damage that has suddenly appeared I still have relatively good skin for a 65 year old. I have the grrrrr reaction when I go to the doctor and he tells me I look well . I have noticed that in summer my skin is less dry which I think is down to more olive oil consumption . We always have a good lettuce crop so eat salad everyday. I dont like shop lettuce so don’t eat it if we aren’t growing it.
I too am struggling with weight but I am convinced it’s due to not taking the T3 anymore. I had another episode of arrythmia about a month ago but luckily it went without needing to go to the hospital. I have to see my cardiologist again soon and am preparing for a battle as I suspect he will want to put me back on blood thinners now I am over 65. Hope the heat down there is not getting you down.
Hi Madge, good luck with the cardiologist, I’m seeing mine 16th July, can’t stand him, but this time I am going to be all sweetness and light. I will ask again what causes arrythmia as last time he said it could be the thyroid, but mine checked out fine. Definately not Cipro he said. Thinks he’s God has all the answers, but he can’t get off his lazy a… and investigate or be bothered to read the information I gave him. Ah well onwards and upwards. It’s hot here, but I can manage, I just dive in the pool or sit in my air conditioning living room. It’s the nights that are difficult because the pain wakes me up and then it’s hot and sticky. Still musn’t grumble, it’s raining “again” in the UK. Let us know how you get on.
What about collagen precursors approach?
https://www.ncbi.nlm.nih.gov/pubmed/18806118
Does anyone have good knowledge about precursors supplementation?
We can take bone broth or hydrolised collagen, but the question is: are they really helpfull to rebuild collagen?
I was taking L-Prolin together with lots of others supplements. However, for my connective tissues, the best was fasting.
John- I’m 4 years out and entering my 5th year. I’ve improved, but not nearly enough to be happy or pain-free at all. One thing you said that resonated with me was that supplements give hope. I couldn’t agree more. Lately I’ve explored active b12 protocols and the mag group protocol. I’ve told my wife that when I stop trying new things I’m in real trouble. Because without hope, even a little amount, I dont know how I’ll do this.
I hate to see people still dealing with pain. Mine fortunately went away…I am guessing one of the several IVs I was getting. But I know others have been helped by cannabis. Also, please look into prolotherapy if your pain is related to damage from cartilage, joints, etc
OOPS! Sorry, not L-carnitine drops, but rather NAC drops…
I did something really childish yesterday. I was having lunch in a hotel when I saw a notice board that said Bayer Meeting with arrows pointing to this room, so I wrote in bold capitals POISONERS on it ha ha ha. I am 74 years for gods sake, but it gave me a strange pleasure. I have sent tons of emails to this crap company and all I get is go back to your health care provider. Anyway I’m allowed to be childish at my age ha ha.
Ha ha, beautiful!
Well done!!!!!!
Oh Barbara, you just made my day! Love it. I have done similar things myself. (One doctor, who had been SO dismissive to me, and even called me delusional and said this was all fake medical knowledge—and btw was a neurologist who knew nothing about nerve damage from these drugs—well, he banned me from his office, threatening to call police. Why? Because after my last visit, I told the people in the waiting room to run for their lives. 🙂
Hi L……ha ha ha ha, you crack me up ha ha ha. What a team we would make 😈😈😈😅😅😅. Whats a hazmat suit ? I have some mercury fillings but I’m leaving them now. I think you have to be very careful if you have them removed.
It’s a suit that covers them head to toe—and yes you have to be careful about mercury removal, which is why it should only be done by someone specifically trained to do so. And let’s keep on making mischief for those who so deserve it!
Hi L -I remember you said you had a lot of upper back pain when you were first floxed. I am getting this at the moment. I think it might be pulled muscles as my muscles pull very easily these days . What did yours feel like? Sometimes it hurts breathing but not all the time. My trigger points in the chest are also very painful at the moment and I have had what feel like muscle spasms in the ribs.
This was like no other pain I have EVER had. IT definitely was not muscular. The only way to describe it is that if felt like it was coming from deep in the bone. I don’t think it is coincidental that it was around the scapula, and I had had two fractured ribs and a cracked scapula several years earlier (thanks to violent coughing from pneumonia that I got AFTER a flue shot!) . I think this stuff “preys on” your vulnerable areas. The pain was WORSE than the cracked ribs, which up til that point had far and away been the worst pain I had ever experienced. Of course one MD said “oh arthritis.” Yeah, right! suddenly and that extreme? Seriously, on a scale of 1 to 10 it was a 20. It was one of the first things to go after I started IV therapy and luckily it is one of the side effects that never returned again. (I still get pain/pressure in the pelvic area. I thought THAT had gone too, but it reared its ugly head again this week.)
But I do know what you are referring to, when your breath catches from the pain. I have experience that from back muscle issues. I also had horrendous chest pain and pressure for months following the Cipro. A doctor and several people here have come up with “costochondritis,” which makes sense, but I don’t think it was that. I think it was mitochondrial damage and nerve damage.
I’M experiencing something very similar to this now., Madge, Of course I have and do have. other health issues ongoing, worsening from past 20 + yrs. I’m sending Best hopeful thoughts, prayers for all that are effected.. not sure this will get sent… and be readable. email Android.? BEST..
Hello all…i havent been on this site for a while. Was floxed over 2.5 years ago after taking alternate rounds of both cipro and levaquin plus an NSAID . have mostly recovered to nearly 95% thankfully. My question is, what are we, as floxies, supposed to do if seeking employment and mandatory vaccines including flu shots are forced upon us??
This is very concerning as it seems like more and more employers are forcing immunizations.
Tricia……since being floxed I have had the flu shot every year for two years. I struggled with the decision whether to have it or not, but at my age I did not want to take the chance of getting the flu. I have had no re action or problem with it so far, but we are all different and we all have to make our own difficult decisions unfortunately.
Flu shots work less the older you get! You would do just as well if not better keepiing your vit d level above 50ng/l and taking NAC. I believe my 2010 flu jab ( the first year they put the H1N1 strain in the seasonal vaccine) reactivated a floxing from 1999. I have not had a jab now since 2011 as despite the vaccination I got flu in Feb 2012. On doing some research I found that that years vaccine actually made it more likely that by Feb you would get flu! This year was the first year of taking the NAC and I made hubby take it too. Not even one cold all winter.
I agree with you Madge. I have read similar reports—not to mention the chemicals they use in vaccines. In the years before I got floxed, two of them, I ended up with the flu and then pneumonia. After being floxed, I told my ND I was worried about ANY other pharmaceuticals, and that I usually get a flu shot and didn’t think I should. I agreed completely. Now, at the first sign of anything, I take oil of oregano drops. (And you mentioned NAC–my new integrative dr, who is a pulmonologist as well as internist told me that if I do feel asthma coming on—which I haven’t now in two years—to up the NAC to 300 mg 3 times a day.)
Don’t get them. A forced injection of a foreign substance is the ultimate in subjugation. My dad had a mini stroke from a flu shot. You dont know what’s in the shot. They don’t give a damn about our health.
Tricia, I’m interested in your recovery journey and what helped you. I, too, took Levaquin and an NSAID (Naproxen) for four days before stopping. I am 5.5 months out. Thank you!
Hi guys,
I have not been on here in a while but talk to some of you in private. I have a question I do not know if anyone will have a answer too!
I am 17 months out and was doing better except for just the daily little flares. I could walk again a bit and my burning would just come & go. My creaky skin was better and I had not had the back pain in a while but hips still hurt. My joints that all cracked all the time had stopped. Now I had a couple of relapses that these symptoms would come back but not as bad or long.
But now I am in the worst relapse I could imagine were every symptom is back and worse. I have had a move and a lot of stressful situations in the last 4 months but had got through them, then boom! Needless to say I am just beside myself at 66. I do not know how much more I can stand and cannot relate to one thing that caused this.
But here is the question. I have found that I have eye pressure and need laser surgery for Narrow angle glaucoma. The thing is I read they use steroid eye drops after this surgery so being in the amount of pain I am in at the moment I have said I would rather take a chance on losing my eyesight than taking a steroid that would cause me more pain. I know this is maybe a stupid thing to say but have any of you had to have a steroid after floxing and what as been your reaction?! Thanks a bunch, Nicole
That is not a stupid thing to say Nicole. I understand exactly where you are coming from. After gasping for breath for months, experiencing excruciating pain, a strangling sensation, horrific olfactory nerve damage to where everything in the world asphyxiated me—I have often said I would rather die than go through all that again. (In fact, one night I was pretty certain I was having heart attack —awful crushing pain and I did NOT call an ambulance because I figured they would try to IV all sorts of pharmaceuticals into me….and at that point I was so damaged I really wanted out.) SO—I understand your concern. I have had the same. I now, post Cipro, in addition to the huge floaters and blurred vision, have early stage macular degeneration. I am freaked out when they want to even use dilating eyedrops!
I did a quick online search and an alternative is an NSAID eye drop—-just as bad I think. I would discuss what’s going on with your eye doctor. I mean, there MUST be others that can’t take these drops. While rare, there are integrative opthamologists out there. I would do a search and see if there is one near where you live and what they might suggest.
Thanks so much L.
I go to a integrated pharmacy and they could only come up with NASID’s as well. He did say the steroid eyedrops had a very low dose in them. But I know what you mean about even the drops for being dilating. I had to see my normal eye doctor then a specialist and not only did I have my eyes dilated but had all kinds of drops for different photos and numbing drops so he could put the lens in my eyes. Then I get this crazy relapse so have wondered if they caused it. But then again I also questioned changing my shampoo. Lol So tired of being afraid of everything!
I am seeing my normal eye doctor today to see if I can at least hold the surgery off for a while.
Isn’t it just horrible what this has done to our lives!!!!
Back to the cardiologist next week!
No kidding. I HATE having to be so careful of everything. One of my favorite things before all this was a road trip. Now I’m like “well, how am I going to get organic food, and make sure I have enough non-fluoridated water, and jeez, all the bazillion supplements I have to take with me…etc” Forget it. I have to go to the opthamolgoist next week because in addition to all the other post-Cipro eye issues, now there is some other retinal abnormality. 😦 And I got back to the cardiologist every 6 months because I STILL have fluid around my heart from the Cipro! (The recommendation is of course steroids or nsaids and I won’t take either.) IF it gets to large it would have to be drained. ugh. Believe it or not though I actually found an integrative cardiologist! Harvard trained! I have to drive over an hour to see her, but worth it to me. The last one wanted me to have a ct scan, after so many other post-Cipro tests. I asked him why and he said “to make sure it isn’t cancer”. That was when I said “Enough!” I didn’t need more radiation on top of everything else. When I told my new cardiologist about the ct scan and his reasoning, she just shook her head.
Let me know what the eye doc says. It is good if you can have more time to maybe research alternatives.
Hi L,
The eye doctor I saw said I did have narrow angles which was why she sent me to the specialist and he needs to make the call. I told her will not talk to me any further about it. She said I was playing Russian roulette by not having the laser surgery because we do not know if I will get a high pressure tomorrow or a year from now but it could take my sight. She did say they do use steroid or anti inflammatory drops after the eye surgery. But in the end she told me it was my call as this is a preventative surgery and maybe I need to explain my situation to him better. She does not get the fact he will not see me again to just talk! I am going to just take my chances as this relapse is just too severe at the moment. It is like every symptom I have had has come back all at once.
By the way, a road trip for me at the moment is just getting to the grocery store. Lol
You know what you might do….if you have a naturopath you already see, ask him/her if they have an opthomologist they like that has similar sensibilities. I originally, post Cipro, was sent to this guy who is like world-reknown…gives lectures all over the place, has incredible credentials. BUT he was very dismissive of my Cipro concerns. Well, I looked him up on dollar for docs and he took $25,000 from the pharmaceutical industry that year. I don’t care HOW credentialed he is, I will not see someone who is so obviously compromised. So then I saw another optha. and HE was raving about the first guy and said he was going to see his lecture. He also was very dismissive of my concerns about ANY eye drops. So I asked my integrative MD— he had no suggestions. I asked my ND—no answer. I asked a holistic dds I had seen and she DID give me name. I see him this week. He is no integrative per se, but she said he has similar leanings to hers. So maybe you could get a referral for someone who might be willing to try to find an alternative to the steroids/nsaids….
Good morning L,
Thanks for the thoughts.
I talked to my NP and they can give you different herbal remedies for some eye conditions but she said she knows of no eye surgeon who would be helpful as there is no cure for glaucoma.
The surgeon did call today and said he uses anti inflammatory drops for 3 days after the surgery. Maybe better than the 7 days of steroid drops I saw on line but not willing to go there at this point.
I do not understand if the eye drops would effect you as much as taking a NASID but will ask my chemist.
I have searched everywhere for a natural anti inflammatory eye drop but can’t find one.
So back to the drawing board!
I am guessing those anti-inflammatory drops are either the nsaids or the steroids… ugh. good luck and keep me posted
Yes L, it is NASID drops. So I am cancelling for the moment as this relapse really makes me feel like I am going to die. It is a different feeling than before so strange.
I did see my doctor today and he is giving me a prescription for a medical marijuana oil but he wants me to go through a government controlled company as he dose not trust the local shops. He does believe it will at least help the nerve pain part.
After a year and a half he finally saw I was not getting out of this today!
oh, good. I sure hope that helps you. meanwhile I am going to do some investigating on the eye drop thing
Thank you L, I really appreciate it.
I can save you a bit of time in the research dept in some areas here . I have quite a bit of information on the eyedrops subject having done a lot of research in this area after my own nasty reaction to both the dilating drops & then subsequently the drops prescribed ( both the preservative & preservative free versions ) for the glaucoma I was diagnosed with, which I now am being told after seeking further clarification I don’t actually have. ( I have been a stable what is known as a glaucoma suspect for many years ). I also had a full workup with drops & investigations which left me further damaged. I even reacted further to the preservative free dilating drops despite having my eyes flushed out afterwards.
All this happened in the Autumn of last year, & unfortunately to date I am still experiencing problems. One reason I am not around so much atm is that this has triggered further problems with serious eye pain & those headaches I get re using the computer .
In regards to narrow angles, please be aware that various drugs can precipitate an actual attack of angle closure glaucoma in those with narrow angles in particular.
Are you ( Nicole ) what is known as a ‘narrow angle glaucoma suspect’ ? An attack of angle closure glaucoma is classed as a medical emergency, & you mention this laser treatment being used preventively.
We do have a FB group specifically for eye related issues for anyone interested .
Anyway I will leave a few relevant links on the drops / glaucoma subject , It is something I personally feel that has to be researched in great depth to try to work out the best route to take when it comes to to the eyes, weighing up the risks vs any benefits depending on the specific problem.
One thing I do know is that there are a lot of very ignorant Drs out there when it comes to knowing about the systemic absorption of topicals, & subsequent problems which can potentially arise from this .
http://www.glaucoma.org/glaucoma/are-you-an-angle-closure-suspect.php
There are many Drs out there who actually are quite misinformed or ignorant on various aspects of glaucoma. & the various treatments & will prescribe drugs which can actually make things worse. This article Is very good is very informative re glaucoma per se. How much does your Dr actually know ?
http://skirsch.com/medical/KirschVisionLoss.htm
various drugs can potentially trigger an attack of angle closure glaucoma or other ocular complications.
https://www.ncbi.nlm.nih.gov/pubmed/12908846
When it comes to getting your eyes dilated I would recommended to make sure that they use the preservative free version . & always make sure that they are not just doing this automatically . Not all eye examinations require this. the preservative used BAK in particular is dodgy
http://www.myopia.org/dilatingdrugs.htm
There are alternatives to dilation , to the best of my knowledge ( though don’t quote me on this ) the jury is still out in regards to whether this can miss some things which can be picked up with dilation
https://www.verywell.com/optomap-retinal-exam-3421829
The effects of dilation can last longer than they say ( particularly relevant in children )
http://drkisling.com/uncategorized/how-long-doe-eye-dilation-last/
Because I am a glaucoma suspect & so many drugs can be risky for me in this particular area , let alone the flox related sensitivities to SO many drugs I now have This is just another reason I try to avoid those allopathic drugs as much as humanely possible.
As you can see the whole subject is a minefield, & personally I feel a lot of research must be done in order to weigh up the risks versus benefits in each persons unique situation
.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3178216/
https://www.facebook.com/groups/750106561713556/
Do you have any information on what drops ARE safer?
I know how you feel. I love eating out and live in probably the best country in the world to indulge BUT the French are late to the organic trend. It is possible to buy organic food in shops ( even this is not 100% sure for no antibiotics – they are forbidden for prophylactic treatment and growth promotion but sick animals can have very restricted treatment under the organic label) but no guarantee in most restaurants. Having to stick to “safer” foods takes the gloss off! Also I find if I stick to my routines at home I feel better. Even a short 2/3 day trip on the bike though enjoyable sometimes has to be paid for with a return of symptoms even if I have faithfully taken the bazillion supplements while away.
I took cipro over a year ago now, still have issues, I know that I have twitching in my body/muscles that is related to the cipro. It’s not constant, it goes away for a period of time and then comes back. Today I burnt my hand pretty badly with a straightening iron, and so I cleaned the burn and applied antibiotic ointment because I don’t want it to get infected since it is a really bad burn. The twitching came back about an hour after using the ointment. I just wonder if anyone could give me some ideas on why this is? I am really frustrated. I just want to get back to my life but I can’t because I have to worry about every single little thing. Am I doing more damage to my body by using freaking antibiotic ointment? Does the twitching indicate more damage or is it just a completely benign thing? I just want to hear what someone else thinks because I have no idea what to think anymore.
I was floxed 4 years ago and went into a full blown relapse from some dental work. I think the stress on the nervous system has been so great some of us cannot stand the negative effects of common drugs. I still believe in full recovery though.
yeah, the continuing issues, the recurring side effects, the worrying about every freaking thing you eat or apply. It’s a huge pain in the ass. I am almost 21/2 years out and have had side effects come back that I thought were long gone. What I would recommend in place of the antibiotic ointment is colloidal silver. Get a good, high-quality one. IT’s expensive, but well worth it.
Thanks for all the information Debs.
I have gone through it all but still a little lost.
I went back to my first eye doctor who sent me to the specialist and she said my pressure was around 16 both days she took it but my angles are narrow so yes I am diagnosed as a glaucoma suspect. She said the specialist goes on and does the laser surgery as a preventive of having a acute high pressure that would be a medical emergency and at this point that should be enough and I would not be put on medication but checked every 6 months to make sure it is working. I would probably take a chance on this if it were not for the anti inflammatory drops for 3 days afterwards. My GP told me yesterday even though it is topical they go down into your nasal passages and into your system somewhat.
I had my eyes only dilated by the 1st doctor but the specialist used 3 different drops for all the tests I was put through and a numbing one to look at my angles through a lens.
It may just be a coincidence that I started getting strange flox symptoms a few days later that have escalated to every symptom I ever had come back with even some I didn’t have. I almost feel like my body is giving out on me!
Now I have had a very stressful few months so I just could have hit my breaking point.
That being said my surgery is set up for August 1st so I will cancel I guess for now and hope for the best.
I do take a beta block for irregular heartbeats & high blood pressure spikes. I probably should have my sugar checked as my mom passed away from complications of type 2 diabetics. It has been borderline for years so maybe I should look more into that.
Glaucoma is not in my family but my mother had lost a lot of her eyesight due to the diabetes.
I joined the Facebook page you suggested and I will look into this a bit more as I think I am confused with this diagnosis on top of all the other crazy things I have to go through because of doctors mistakes & FQ’s!!!
Thanks again!
It could be the stress that has precipitated the relapse rather than the eyedrops. I had a stressful period earlier this year and had a lot of my floxing symptoms return . After my last run in with Cipro ( one pill only) I had an episode of afib and was put on a beta blocker. On the dose prescribed by the hospital cardiologist I felt like death barely warmed up . I suspect it was the standard dose and maybe my liver was not metabolising it fast enough so I was getting a build up. On reducing the dose drastically I was much better able to tolerate it . Luckily my own cardiologist said I could stop it a few months later.The only time I get high blood pressure is when trying to convince doctors of the dangers of FQs!
I think you are probably right Madge.
I had to move in April and since it was to a small condo I had to sell or give away all my furniture and start over. I also spent weeks cleaning and packing as my husband is 74 and still works long hours. I did this with torn tendons but was okay until I had about 15% of the packing left and my body just gave out. I got through though but had so many things on me thes last few months with unpacking, having to take my grandchildren more as my son was travelling out of the country with his job, my husband’s work was crazy, I had a lot of doctor appointments and I had a bad fall that has torn more shoulder tendons. Then to get the news about my eyes was like the icing on the cake. I also had started texting with a young Floxie who was in emotional trouble and I wanted to him but he is talking about wanting life to be over so much and I am just not strong enough to keep holding someone else up I guess. So I finally just blew up. I guess I knew it was coming as little things from my floxing were already getting worse day by day. I have never been healed but my feet were better and I could do daily chores and shopping. The thing is my family saw this as she is fine now and kept putting more & more on me and I did not want to say I can’t do it anymore as I don’t think they really understand or believe what has happened.
I was floxed about a year and a half ago in the hospital. I had had Cipro before but the first pill this time gave me acute hepatitis and I was then doubled dosed with a Avelox then even though they caught my liver 3 days later they still left me on the Avelox for 10 days. I am surprised I lived and the tendons actually did not start until over a month later then the neuropathy burning starter 4 months later, hives and a billion other things followed. I was being treated by a NP all along because I found FH right away and learned so much. I was at a point of feeling hopeful that I would have some kind of life but this relapse is so much worse than any other that I have had & at 66 I am starting to feel this is maybe it for me.
Sorry to vent, not really like me. I have lost my friends and my husband is tired of hearing me talk about this and maybe God is too. I have gone back to the crying stage again and yes I also see a psychologist over this! Lol Wow… the money I have spent trying to get better. I am really missing my old life and just silly stuff like having my nails done. Just so hard to believe life changes so much over a antibiotic and no one seems to get it!
Okay enough complaining and I do have another question for anyone. I got a CBD medical marijuna patch yesterday but see it has lidocaine in it and worried about lidocaine and floxies?! Thanks for listening, mornings are hard!
You have really been through the wringer. But do not despair. I am sure all this stress will have contributed massively to your relapse. You need to be firm about not taking on too much and try to get back on an even keel. Your family needs to be more compassionate and stop burdening you. Your grandchildren are actually your son’s responsibility not yours and it is unfair to expect you to look after them when you are sick. And we are sick when in the middle of a relapse. I had a mini relapse after having to travel 3 times to the UK from France ( hardly a long distance) in two months. Since then there have been problems within the family. Hives was one of the symptoms that came on though I did not have it immediately after my last floxings.
I am starting to feel a bit better now . I am lucky in that my husband ( same age gap as you) is very supportive and we are luckily retired. I find the hot weather helps. I think it is maybe because I sweat so much especially when gardening. Maybe I am sweating out toxins. I have also started using iodine by painting it on my skin. I read that this can help fibrocystic breast pain which I suffer from and which I suspect has been worsened by the floxing.
When I have relapses I try to tell myself that I will improve again and that the firther out I get the easier it will be though at our age the waiting is hard. I will be 2 years out from my last pill at the end of this month and 3 years out from the hospital iv floxing in octobre. Bon courage as we say here!
Just to show how differently we all react, I seem to do worse in hot weather! Much better when it’s cool or cold. Where I live it has been hovering around 100. Ack.
HI Nicole. So, I saw my new opthamologist yesterday. I couldn’t remember what your condition was, but I just asked generally about alternatives to steroids/nsaid drops post surgery. He assumed I was talking about cataract surgery, so I just went along with that. He said there are not alternatives (again one doctor’s opinion) BUT he also said they were not mandatory. Now again, this was post cataract surgery, but the same may apply. he said they PREFER to give the drops for inflammation, but said it could be done without and what would happen was, recovery would be a bit lower. The eyes would feel a bit blurry, a bit gritty. However he said the antibiotic eyedrops WERE necessary. Then he went on to tell me (and this is disturbing) that the newer class of fluoroquinolones were the number one choice! ACK. But then he added, of course that they would not be used on someone who had had a problem with them in the past. So I think you might check with a couple different doctors and see if one of them is willing to do the surgery with just an antibiotic afterwards and not the steroid/nsaid. Again, it may be different for your type of surgery, but maybe not.
And in this small small world, when I was checking in, the receptionist got an “OMG” look on her face when I mentioned the Cipro. Her sister had had a major health issue after Cipro.
A friend emailed this to me. I posted it on the floxiehope facebook page. I also wanted to share it here:
“This is an item I found in a British Daily Newspaper. I think its great advice to all floxies, and maybe it will help because it’s written by a British Doctor.
The title is………FIND A MEDIC WHO LOOKS YOU IN THE EYE
Respect is crucial and how the doctor addresses you is telling. You want a doctor who looks you right in the eye, with kindness and respect.
If he doesn’t make eye contact, he doesn’t see you as a human being and will be treating you as a blood test, condition or body part. That could be bad news for your health.
Similarly, does your doctor really listen ? And ask questions about your life ?
Physicians and patients have been indoctrinated that our personal lives are relevant only to a psychologist or therapist – but nothing could be further from the truth.
Everything that happens to you effects your health. No part of you operates independently.
If the doctor does not ask personal questions, he wont be able to provide the correct treatment you need as an individual.
You also want a doctor who encourages you to ask questions, without making you feel stupid for doing so. There is no such thing as a stupid question.
We have been conditioned by the arrogance of the medical profession to think we are less important than the doctor, hence our questions are stupid.
If a doctor looks down his nose at you, ignores your questions or answers you in a condescending tone, you have to move on, whether your a private patient or seeing an NHS doctor.
I wish ALL doctors had this doctors attitude, so much more healing would take place.
Thankyou to a true healer….Dr. Martin Scurr.”
Yes, so very important, both physically and mentally
Had a SEVERE reaction 5 1/2 years ago. Had every symptom posted here. I still have pain in my hands (Proximal and distal joints), intermittent twitches, some burning pain in my lateral ankles… However, today I walked as much as my endurance/conditioning tolerated and I was even challenged to a game of handball and I played a full game. I hate to sugar coat things, but I am so much better. I am not normal, but life is much, much more bearable, and MORE normal. Life is good once again. Hold on there, you will be much, much better.
That’s terrific! Especially impressed with the handball!!!
Cipropoisoned- I believe I read many of your posts from another site, maybe Surviving Cipro, years ago. So glad things are improving.
Hi SM, that is me. I am much, much better. Still have issues, but they are minor 1 out of 10. How long will it take to go back to normal, I have no idea. However, it seems like there is progreseive, slow improvement.
Cipropoisoned- Are you doing anything worth discussing, or has it been just a matter of time and healing? So glad to hear you’re doing well. It gives us ALL hope. 🙂
SM, it’s all been time. We have no idea what is going on, so it’s hard to treat something for which you don’t know the mechanism of. I personally believe it’s all an immune reaction that withers with time.
Actually there is some idea of the mechanisms by which it destroys. The first two letters “dear doctor” and “dear colleague” give an explanation of what happens. And while time is certainly important, there are things that demonstrably help, eg magnesium and probiotics. Another good source is Dr Jay Cohen’s book “How We Can Halt the Cipro and Levaquin Catastrophe: The Worst Pharmaceutical Disaster in U.S. History.”
forgot to give the link to the letters! https://floxiehope.com/tag/dear-doctor-letter/
That is such great news!! So glad you are feeling better! That’s great hope for all of us. Thanks for sharing…
Thanks everyone but I just did a text to you all, and Madge and L I had a lot to talk about but lost the whole text for some reason and it took me a hour as my shoulders & hands hurt so bad to text.
I have been crying on the bathroom floor all night and losing this text has just so upset me. I am so weak right now. I will get back to everyone when I can. Sorry, just so depressed this time, much more than I ever was.
Hello everyone. I was just floxed… nearly 2 weeks ago, and these have been the scariest, most overwhelming weeks of my life. I have a 2 year old daughter I barely have the energy to care for anymore. Please, if anyone has any suggestions for the newly floxed, let me know! I already have very bad symptoms, weakness, brain fog, unable to control my body temperature, heart palpitations, you name it. Does it just get worse from here? I started supplements immediately after stopping the Cipro (I took the Cipro for 5 days), and have also been doing acupuncture but still feel extremely ill and feel worse by the day. With all that being said, I am very thankful for this page and wish you all the best of luck as well.
Lisa has a page devoted to the newly floxed. In addition to supplements (hopefully including Magnesium—up to 800 mg and if you avoid citrate diaahrea shouldn’t be a problem) and probiotics—multi-strained) avoid gmos, non organic meats, fluoride. Will it get worse? Maybe yes, maybe no. We all react so differently. Here is what Lisa (owner of this site) posted. https://floxiehope.com/tips-for-the-newly-floxed/
I bought an arnica rub a few weeks ago and haven’t used it because for some reason I am really worried about having a reaction to it. It seems ridiculous to me, I’ve looked at the ingredients over and over again, and it’s a homeopathic cream, but I’m still worried that I’ve missed something. Just seeing the words anti inflammatory and pain relief cream makes me think of steroids.
The active ingredients are: Arnica montana (Leopard’s Bane) 1X 8%, Aconitum napellus (Monk’s Hood) 1X, Belladonna (Nightshade) 1X, Calendula officinalis (Garden Marigold) 1X, Hamamelis virginica (Witch Hazel) 1X, Hypericum perforatum (St John’s Wort) 1X, Ruta graveolens (Rue) 1X, Symphytum officinale (Comfrey) 1X
and the inactive ingredients are: aloe vera juice, carbomer, caprylic triglycerides, cetyl alcohol, glycerin, glyceryl stearate, isopropyl palmitate, phenoxyethanol caprylyl glycol, polyglyceryl-10 stearate, sodium hydroxide, stearic acid, sunflower seed oil, vitamin E, water.
Does this seem safe to use after being floxed? I’d appreciate any help that someone can offer.
That seems fine. I have used arnica many times. And this one seems to not contain unhealthy ingredients like parabens (used to preserve.)
Hello Everyone,
Is there anyone here who has seen a great homeopathic doctor in the UK?
Its hard for me to find someone that is aware of Cipro Toxicity. Most of them say it doesnt matter what drug caused the reaction but to identify the symptoms and treat the body as a whole. I would feel more confident if there was somebody who has direct experience with Cipro.
I would opt for a naturopath. You might try to get a referral from this site http://www.naturopathy-uk.com/home/home-what-is-naturopathy/
what can we do for balance/vertigo issues? is this 100% nerve damage related? mitochondria related? i feel like im constantly walking on a boat and it feels like my body is being pulled straight down. ruined my life. 6 years out.
life was good for 2 years (took long to get better from 2013) Then something hit me 3 months ago, it started with a dry cough, thick nasal drip, anxiety kicked in severly/depression also, im 49, period were 40 days late, am i in perimenupause?, feeling of 10 bricks on my chest couldnt handle movement on the tv choking to breath 74/7 so severe i had to get back on ativan, extreme fatique, from healthy energetic woman back to squeare 1, at least i sleep without sleeping tab , they want to put me on angeliq and brintellix AD. any advice as ive read to get to menupause can take you off your head lines, no really hot flushes yet. anyons here went through menupause with this sudden onset how long? cant function at all without the ativan tried for 2 months. tried st john wort nothing helps all natural calming stuff did nothing to help me. ive been on ativan the first7 months in 2013 but could go without for a few years till now, i know how bad benzo is but i want i dont want to jump off a cliff.
well you are certainly in the right age range for perimenopause…but all of those would not be attributed to it, unless you think the change in hormones has reactivated the flq toxicity? I had a pretty rough go with it…had night sweats and hot flashes for years. I did hormone replacement which helped a lot, but having been floxed I don’t know that I would recommend that. I have tried st johns’ wort and it did nothing for me either. For depression something that really does help is turmeric (95% curcomoids) 1,000 mg day. It is not immediate, but if you stay on it it really helps. (Studies have shown it to be better than Prozac.)
Hey everyone,just stoping by to say hi.Been a while.
Still not fully recovered,still dealing with relapses,still haven’t given up,
still haven’t forgotten you all.Sorry I haven’t been here in a while,
but sometimes I just want to close myself off to the reality of my
situation and just binge on Netflix.I feel guilty for that.Lately I found
that hitting my relapses,cycles,flares,etc with three or four days of green juicing
really helps.Thinking about going back on Colostrum because that helped me so
much in the past,If only I can find away to get around the side effects.
So understand FrankB!
I have been in the worst and most painful relapse so far. Even worse than the beginning. Do know for sure the reason why this one is so bad.
I have also been watching Netflix. Just binge watched Grace & Frankie!
May I ask what side affects you got from the colostrum? I have some but have not tried it yet. My gut is so touchy with everything.
Thanks, Nicole
It’s good to take breaks from here! Are you staying on probiotics? I would recommend that for life.
Hi Nicole,Hi L.The side effects I experience from Colostrum is mainly(only)
an extreme drop in libido and constipation.The libido I can deal with,it’s
why the drop happens that bothers me.Obviously it effects my hormones in
some way and I’m afraid to stay on it too long.Is it possibly estrogenic? I have a female friend who has been using it without side effects in that area,so I wouldn’t be afraid to
give it a try if you haven’t already.The constipation is bad.A teaspoon of the stuff
will back me up.I have the same problem with Whey powder.L,No I’m not on any probiotics.Can you recommend any brands or
foods? My problem is I had and still have other ailments before getting floxed.I
suffer from IC,prostatitis,frequent bladder infections,so I am forced to use antacids sometimes to calm down a flare up.Antacids always trigger a floxing relapse with me.
I wonder why? Strange.Our bodies produce bicarbonate naturally…And so I have to
make a decision,one discomfort for another.It’s either I use a bicarbonate to
knock out the infection and inflammation or go on an antibiotic.I’ve sworn to never
take a another antibiotic ever again.I have let my family know that in the event I
get any ailment that requires an antibiotic to survive it,like pneumonia I’m letting the disease
take it course.
P.S.Never heard of Grace and Frankie,I’ll have to check it out.
Hope you feel better,
Frank
Can’t answer regarding the colostrum but in lieu of antacids I would try papaya enzyme or something more natural. If you are having digestive issues you might want to go on Betaine HCL. It is a bit tricky to know how much to begin with—I had an ND helping me, but I started out taking 4 with each meal that had protein. That was 2 years ago. I weaned my way down and now I still take one capsule with a protein meal, and occasionally I take something called essential enzymes with other meals. Another option is organic apple cider vinegar. Good to have on hand for so many uses.
I’m with you on illnesses! I might try something like amoxicillin, but other than that—no more drugs. I would get a high dose vitamin C IV or similar. I used to get flu shots religiously (although two years I got the flu anyway and one year it led to double pneumonia.) Never again. I have not gotten one in almost three years and never will. (I was reading a magazine yesterday and it had an article about all these different vaccines they were urging people to get. Ugh. Guess I have to write another letter to the editor!
Hi Frank,
I actually use tums and have not had a problem I don’t think even though I am in a bad relapse I have had the tums all along.
I did see a story about a doctor that stopped the FQ toxicity in someone by using tums somewhere.
That being said they are not really good for you and the things L has suggested are much better for you in the long run.
I have had a round of Amoxicillin for a uti since floxing and no problem. I have also had a diverticulitis attack and had to have something stronger so had Augmentin also with no problem.
NOther meds have caused reactions but some I have to take because I am 66 and also had other issues before. Some I have given up like my statin even if it did not make my cardiologist happy.
Like L I also had a flu shot every year but never will again.
This floxing was a very bad one and now know it was my third in 12 years. I just never put my symptoms together with taking a antibiotic. It is really disgraceful to let this happen to anyone. I try to not be angry but you know I kelp telling them in the hospital something was wrong then later called four different pharmacies and said great drug, will not hurt you. Not one side affect was ever mentioned and this was just 18 months ago??!!! I was even double dosed in the ER with Cipro & Avelox after the Cipro had put my liver into acute hepatitis. When I told them what kind of pain I was in they just treated me like a baby and yelled at me.
Anyway if you watch Grace & Frankie start with season one. This is the third season. I do not know your age but this sitcom may only appeal to the over 50 gang! Lol
yes, I get so angry too at how DISMISSIVE healthcare providers can be when you try to explain how toxic these drugs are. As for UTI, I have CURED one since being floxed with no antibiotic. I don’t have the whole protocol at hand, but an ND (esp a female one) should be able to provide you with it. It involves high doses of vitamin C, vitamin A, d-mannose, and Herb Pharms’ urinary system support. IT is supposed to take two weeks. Mine took almost a month. But a test showed it did indeed go away.
Funny you should mention not taking statins. Just recently a friend of mine went to my integrative internist complaining of stomach pains and a couple other symptoms. The first thing the dr tried was taking him off statins and putting him on ubiquinol. Guess what? Pain is gone.
Has anyone dealt with widespread neuropathy? I have burning feet, tingling and pins and needles in legs, hands fall asleep at night, and atypical trigeminal neuralgia symptoms, how do you deal with this? Does it improve with time? I am five months in from taking Levaquin 500mg 1x/day for four days. Thank you.
Hi Penny. I was one who was severely floxed…more than 30 side effects, some terrifying, effecting vision, breathing, olfactory…just really head to toe damage. PN, although most tend to think of arms and legs, hands and feet, can be anywhere in the body, and I had nerve damage literally everywhere.
I am 2 12 years out and 90-some percent better, but I do still have PN in my toes and a couple fingers (and a few other persistent side effects.) Mine is only numbness as this point and may be permanent, but I am not giving up. (The label does say it can cause permanent nerve damage.) I had horrific pain in some other areas that I think was nerve damage related, and I suspect the toes and fingers being the furthest of the extremities may have something to do with it. I think what helped me the most, although one can never be certain, were phosphatidylcholine IVs. The recommendation is 40—which is a LOT. I stopped for a while, and now have only 4 more to go to reach that. But even after just a few, some pain which I believe was nerve related disappeared. (I also wanted to continue the IVs because it is also supposed to help mitochondria, and I was told that some of my issues were related to mitochondrial damage.)
PEMF (Pulsed Electromagnetic Field Therapy) is supposed to help with pain from neuropathy. I only tried it a couple times, and may try again at some point.
Yes, I have that aND it has gothen worse overy time, Make sure you take B vitamins like folate, benfotiamine or another absorbable form of thiamine and B-12. When I stopped taking it mine got worse. Find a good ND or functional medicine doctor. I went to 2 neurologists at Cleveland Clinic that were worthess. One of them even told me to find a functional medicine doctor.
should be 2 1/2 (not 212!)
Hi everyone, I’m 5 years floxed this coming October, was 35 when it happened. Have been on and off this site since then. I’d say realistically I’m 65ish percent better I was severely floxed. I still have pain which I believe is the connective tissue/fascia pain mostly. Some nerve pain to. It’s all in varying degrees. Had a few questions anyone try gelatin?( If so how did you take it) I’ve read it can help with joint/connective tissue. I couldn’t stomach bone broth but maybe I’ll try again. Deep massage helps me temporarily too but I can’t afford a massage every day. I use to be a massage therapist before this.some people recommend prolotherapy but I can’t inject my whole body. Also regarding dental work what to do? For cavaties I just suck it up and use nothing but I need a crown eventually and can’t use any Caine’s. Any suggestions? Thanks, Heather
for pain in connective tissue I would look into prolozone and prolotherapy. (prolozone doe use procaine.( wa severaly floxed but seem ok so far with all the Caines (did you try carbocaine too?)
Yep tried carbocaine for dental work 3 or so years ago, had migraines for weeks and bad flare-up of pain for months and that was using only 3rd of the dosage. I haven’t tried them all but assuming they would all put me back after that happened. I even skipped the epideral when I gave birth a year and half ago to risky. So if that’s what they use in prolotherapy that’s out for me.
damn. sorry to hear that. procaine is what they use in prolozone. I don’t know what they use in prolotherapy. you might want to search that out.
Heather what you just said makes so much sense for me. I just had Alcaine drops for 3 different eye tests and I have been in the most painful relapse ever since a month ago when I had them. I have been trying to figure out what I did and that was the only thing different. Unfortunately I need laser surgery on each eye one at a time with these drops and NASID drops. I could lose my sight without out the surgery but this relapse is worse than I ever was.
So you have pretty much answered what happened. At the moment I will just take my chances without surgery because my pain is unbearable.
I don’t know who ask about the all over neuropathy but I have had it just about everywhere. Mostly terrible burning. Like L I had a very bad floxing 18 months ago. My burning was coming and going until this relapse, now horrible again.
Also for the person who cannot eat bone broth I use a high quality collagen powder. I was not giving it enough credit and stopped it. My skin got all wrinkly again and now all my joints are popping once more. It had stopped after a few months on the collagen power.
I had septocain for dental work back in Oct and have had a major relapse. I tried prolozone, with procaine, and that has done nothing good. I guess it was the procain.
So I am getting worse still. I am still playing the begging game for help. I stay positve I try to find the joy in each day. The one thing I have no more tolerance for are poeple who are curious about me. I have been understanding for 2.5 yrs now. I have been kind to those who wish to use my illness as talking points with people I used to work with for them to make conversation and have an in. I am now done with that. I don’t think people understand that asking someone for information on how they are doing because they are curious is messed up. I don’t need people to be curious about me. I need support and love and if people want to be curious about me they can get me telling them where to go and how to get there. Maybe they will learn that my kindness was a gift and they didn’t deserve it.
I am just going through trying to live and don’t need to be treated like a thing of curiosity by anyone I am a human being. I will not tolerate not being treated like one anymore. My heart is getting worse and so are my attacks. My fiance told me sometimes he holds me when I am sleeping because I don’t look like I am in pain. I don’t think the people who say I just wanted information cause I was curious understand that at all.
I am so sorry. Sometimes people just plain suck. You need to do whatever is best for you. Certainly anything that is stressful does not help your health at all. Sending a virtual hug.
YEah I used to say I have to be understanding. But I so sick of it. I just getting worse. I sorry I haven’t written oyu just so tired lately. I have to use computer to write email and I just so tired lately. Even me naturoapth look at me with sad face last time I go in. He going to special conferance in September about people with unlabled seizure behavior. It seem that they making new classification for nerve issues. Gosh I wonder what we may have been damaged by,,,,,,,,,,,,,,,,,,,,,,,,,
Hi Nicole can you tell me which collagen powder you use and how you take it? Also I don’t really take medications anymore but I find that benedryl helps the nerve pain. Maybe it slows down the damaged nerve receptors I’m not sure really but it cuts down my pain level. It does not cure it or take it away but I end up taking it every other day because I have a 14 month old and have to do something to help with the pain. I also started tumeric this week. I take a bunch of other supplements and notice the difference when I am eating extremely anti inflammatory but it’s hard to keep that up all the time. Ugh figuring out how I will get a dental crown seems impossible.
again, luckily for me I seem ok with procaine and the others my holisitic dds uses, but I also want to warn you against nitrous oxide, if you were considering that. This is a quote from “My Quin Story” : ” If I need a local dental anesthetic (which is very rarely), I always request a low-epinephrine numbing medication, since my body does not respond well to the amount of epinephrine contained in regular numbing injections (no-epinephrine is also available).” I don’t know what those would be, but might be something to investigate.
Hey guys, read something I thought I would pass along for those of you dealing with pain. I am taking MSM for allergies and connective tissue and then I just saw this when I was googling. Might be worth a shot. “Maybe the most important find of MSM is that it is an {effective pain killer]. MSM works on many types of chronic pain. Stanley W. Jacob M.D., Ronald M. Lawarnce M.D., Ph.D. in 3/99 published “The Miracle of MSM” The Natural Solution for Pain”.
Heather I am in Vancouver, BC and I get a collagen called TruMarine Collagen. I do believe it is just Canadian and if you are in the states you will have to order it. I have some Floxie friends down there who have ordered it and love what it has done for them. My NP says it is the best and my supplement shop seems to sell out fast.
You can put it in liquid or your food like yogurt. You just have to give it a few minutes to dissolve. I just put a scoop ( which comes in the jar with it ) in my water bottle and shake it up. I only have one scoop a day but you can have two. My friend in NYC puts it in her tart cherry juice.
I have heard from a few people about antihistamines helping with the nerve pain. Does anyone know why?
I am going to look into the MSM L for the pain. I just tried CBD oil but lowered my heartbeats into the 40’s so my cardiologist said for me not to use them as this is normal with some people. I also bought patches but luckily did not use them as I saw they had lidocaine in them as well and something just said don’t use them. That was before I had the Alcaine drops in my eyes. pretty sure they are what has caused my relapse as it just came within a few days of the eye tests. Now what?!