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:
Rene Caisse & The History of Essiac Tea – Essiac Facts
http://essiacfacts.com/rene-caisse/
I just wanted to give you another site on the history in case you were interested in it ❤
Essiac Tea is an herbal remedy that a nurse, Rene Cassie, was using for 50 years that was healing more than 80% of her patients and they gave her the worse cases those who the doctors tried everything and were sent home with no hope.
Anyhow, Essiac Tea has an Amazing history of curing cancers. Please do an internet search and read about it.
Thanks, Joanne. When I get back from the surgery I’ll be contacting my herbalist and mention it to him. I’m sure he’ll know all about it and probably have a supply.
Thanks, L. I don’t know what z pack is!! I’ll have to check into it.
I just found this link by accident, but it made me wonder if those that reacted poorly to glutathione did so because it was too much, too fast… https://www.consultdranderson.com/fluoroquinolone-toxicity-cont/
Thanks, L. But I don’t think the doctors will allow me to do that, have anything interfering with the working of the antibiotics. But worth looking into.
of course you have to do what you believe is right. Here is a start on the research though (and I can remember in the past, when I was given antibiotics for UTIs the nurse would say “eat lots of yogurt.” https://health.usnews.com/wellness/articles/getting-your-probiotic-fix-when-taking-antibiotics
Hi, L. Thanks again. I’ll take along the probiotics and see if they’ll let me take them between doses of antibiotic. I’m taking magnesium too.
Hi all. Trying to figure out what has been exasperating my side effects lately (brain fog, anxiety, nerve pain, tendons, the usual…)
One of the things I’ve narrowed it down to was the inclusion of Apple Cider Vinegar in my diet. I started taking a shot of it every day (sometimes diluted in water, but usually not) and also putting some on my salads every day. Is there any reason to think that Apple Cider Vinegar could be irritating my symptoms? Has anyone else had any issue with it? It’s really my only significant source of probiotics.
Of course it could just be a “random cycle”, but honestly it does not feel that way. Just curious to know if anyone has had a negative experience with ACV.
That does seem like it would be an odd trigger, since it’s good for gut, and the gut is connected to everything. One thing—I would not take it undiluted. The only other thing I can think of, although these are not typical signs, is histamine intolerance. Those with histamine intolerance can not have fermented foods.
Thanks for your encouragement, Melissam. I’ll write when I can. Best wishes and prayers on your own present struggle.
Thank you Mike. That is so nice. We will pray for one another!
I’ve been hearing great things about the product MitoQ but when I look up the ingredients it does have alot of questionable additives in it as followed:
Microcrystalline, Carrageenan, Hypomellose, & Silica-Colloidal Anhydrous. You’d think for the price it would be 100% organic with no chemicals. All research shows eating organic and avoiding chemicals is the way to go. Unfortunately, in desperate circumstances we take desperate measures to try to get better. At this point its hard to trust any companies that aren’t just taking advantage of people trying to get better for financial gain. We trusted our doctors and look where that got us.
Paul,
I did take mitoq in the very beginning. I was floxed badly 4 years ago but eventually recovered to nearly 95%. I have no idea if mito q helped or not as I was taking a lot of supplements at that time, but it did help my energy level for sure ! My nerve and tendon pain eventually phased out over time though
The free radical theory of aging is extenselively studied for over 50 years,and the results are still controversial.The info I find about MitoQ is even more fuzzy;targeted on the mitochondria (question;what,if all your mitochondria are damaged by FQ’s? Does MitoQ stiil work,here?).
Well,it works 847 % more effective than CoQ10;science at its best,and all human beings are equel.How on earth do they determine how effective it really is? This 847 % more does,really mean it is 947% as effective as normal CoQ10? makes me wonder….
And,of course;I can’t find any research on MitoQ,and how it works on floxies and their damaged mitochondria.And this stuff is quite expensive,as well!
I did find info (an assumption?) that sports and other intense activity stimulates cells to make more (and healthy?) mitochondria,like I postulated a while ago.Might sporting and other intense activities really be a possibility for floxies to “repair” their mitochondria? My experience is that,after a period of being quite active (as far as being floxed allows to be) does have a possitive effect on my energy level.
As for the docu Lisa linked for us: a real must-see,but not that much new info.As usual,the Bayer liar tells us that,compared to all the people,helped and saved by these miraculous FQ’s,the problems of adverse reactions are minor problems,actually not worth talking about.
Well,lets see! You take the total of all users,substract the number of people who didn’t need such a hefty AB in the first place,or didn’t need ANY AB at all,then substract all the people where those FQ’s didn’t do anything positive,and the people who are damaged,a lot of them for the rest of their lives,or even died of FQ-poisoning. How many Happy FQ Users are left? Not so many,and certainly not as many as those Bayer- and other FQ makers want us to believe.And,compared to all the misery this poison caused over time,in my opinion;the balance for FQ use is convincingly on the negative side.
Thanks,Lisa,for pointing us to that docu;in Africa,too,FQ’s are of great concern.
Thanks Tricia! How long did you take it for?
I think off and on for about 6 months! And tons of magnesium, too.
I think off and on for about 6 months! And tons of magnesium, too.
can anyone send me the book The Fluoroquinolone Toxicity Solution…in our country we dont have paypal please
That book is a compilation of info,found on the web (and on websites like floxiehope :-))
One good resource that you can get for free online is “The Flox Report” (AKA “My Quin Story”). It’s packed full of info (over 250 pages).
Don’t let it scare you. It discusses a lot of the worst cases, but most people recover from being floxed. It will help you gauge the extent of your damage, and it has chapters on nutrition and supplements.
For me, it’s been 6 years since my floxing, and I’m living my life again. I spent 2 and half years unable to walk at all and wondering if I would ever walk again. Now I can walk for miles without any pain.
I’m convinced that the true healer is just time. Decrease your toxic load as much as possible. Eat the most nutritious diet you can, avoiding sugar, soy, caffeine, and any meat , fish, or dairy that could have trace antibiotics in it. I consider 2 supplements to be essential, Vitamin C and a good magnesium supplement. Magnesium oxide is useless. I got good results from magnesium citrate, but there could be some that are better. Soaking in Epsom salt is an excellent way to get magnesium into your system transdermally.
If you have floxed tendons, don’t let medical practitioners push you into physical therapy too soon. Floxies don’t have tendinitis, but instead have tendinopathy. It’s not good to work a tendon that still deteriorating. You’ll know when the deterioration stage has ended and the healing stage has begun.
Here’s a strange tip. Once my tendons entered the healing stage, they were still sore all the time, and I babied them. Then one day my husband took me out for the first time in a long time since I’d been floxed, and I rigorously exerted my tendons on that outing. It was really painful, but then, not too long afterwards, they completely healed. It’s like, once they’d started healing, they needed to be pushed to the limit to heal completely.
Hi guys. As I wrote on some previous post, I’m experiencing GI problems after taking a probiotic for a few days. It’s been a few weeks now, if not a month already, and my symptoms aren’t improving. I’m eating clean, doing physical activity and drinking water. But i’m constanltly bloated, costipated and sometimes I experience diarreha. I’m eating prunes, and drinking aloe juice. But nothign seems to work. I was thinking about a laxative. Any suggestion?
Hi Andrea prunes might not be the best of foods right now for you due to their high sugar concentration also juices have very high sugar concentration themselves maybe just try eating the fruits raw and don’t overdo it, i’ve been having GI problems myself ever since i’ve been floxed 4 months ago, the probiotics if they’re a good strain i think they do help but they’re not really a cure all try to look into the low fodmap diet ,that worked for me but keep in mind that you’re symptoms might wax and wane regardless of what you do at least that’s been my experience . You said your eating clean what are you eating exactly ? if you have intestinal issues anything gluten or dairy can be a big culprit regardless if you have a food sensitivity or not.
HI Remus. Nice to “meet” you. I’m eating all the things that made feel good until I screwed my gut flora with those probiotics a month ago. so, I’m eating whole grains, veggies, boith cooked and raw, fruits, nuts, legumes, poultry, meat, fish. All the good stuff. Real food. Avoiding all the refined crap. But. to get more specific, even when I was eating a 80% crap diet, I never experienced GI issues. It all started after the probiotics. Here’s my theory : many people experience bloating or costipation with the PB, but after a little while, or if they stop, they retourn to normal. But me, more specifically, my body, as a whole, has been so damaged by the FQ, that it can’t really regenerate after an “attack”, in this case the PB…I don’t know, but I feel this is the only answer. Many people expereince terrible relapses just by drnking coffee or taking the wrong medication eg: NSAID’s.
Andrea,prunes and aloe are often used as a laxative,by people,having constipation.And both are rich in sugar,
Aloe is not suited for long term internal use,and people with sensitive intestines should not use it at all,nor should people with kidney problems.
Research has shown that,feeded to rats,aloe causes the growth of tumors in their intestines.No research done with humans,yet,but the safety of aloe is questionable.Aloe is extremely over-hyped at the moment because many farmers have started growing aloe crops and are promoting their products without any research on the health claims.
What kind of probiotics do you use? During the time I used Lactospore I noticed that,when I had diarrea (comming from the barbeque of my neighbour),I didn’t feel sick,and the diarrea lasted for just a few hoursafter which my stools got normal again.Had a few more cases of food poisoning in which my intestines recovered in the same,remarkably short time.Might,partly,be because of the Flecainide I use,which makes the stool hard;I have to use extra fibers daily to prevent getting intestinal bleedings (again) because of this.But since I used this Lactospore for a few monht my stool is perfect,if not too compact from that Flecainide.Before the Lactospore it was not that stable,but changing from day to day.
I do advise you,again,to look for someone who can help you build a magnetic pulser;this helped me,in the past,after 3 years of loose stools (thanks to a course of Amoxicillin and Metronidazole).It took around 2 weeks to solve the problem;after that two weeks my loose stools went to normal and my carb over-sensitivity went to a level where I could eat bread and things like panetonne in reasonaqble quantities,again.Not like before that rediculous B course,but acceptable.
Have you considered you might have a gluten intolerance? Or an intolerance for other kinds of food? AB’s are the perfect way for creating food intolerances,and,because italians love to eat pasta’s and bread that should be the first thing to look at,considering your problem.
Henk, I’ve tried, only for a few days, to eat gluten free. Not because I was feeling bad while eating pasta or stuff like that, but just to try it. Nver noticed anything. So I kept eating the way I always ate. Now, all the healhty stuff, seem to gave me extreme bloating. All the rich in fibers foods : whole grains, vegetables, both cooked or raw and so on…It really seem that the PB screwed my gut health. The lady who sold me that stuff, it was very expensive, told me that it was normal, for a few days, to experience some discomfort, but I never thought something like that could happen. But Hey, welcome to the wonderful world of floxies!
PS the probiotics I used I called enterelle, to take for 6 days, after that, you should start with another one for 2 weeks, called bifiselle.
Hi Andrea,I think you might be right.I found some info about those PB’s and and what amazes me is the fact that you don’t have to use 2 products,like you wrote,but three;after the Enterelle and the Bificelle you have to use Ramnoselle.All made in Italy,of course :-)) You can switch language to italian,or several other languages,if you’d like:
https://farmacialoreto.it/bromatech-enterelle-integratore-alimentare-confezione-doppia-24-compresse
Could it be that the fact you didn’t do the whole protocol,al three products,?
Andrea,I found a shop that sells these probiotica a lot cheaper:
https://geopaleodietshop.com/product/4861906/enterelle-fermenti-lattici-con-saccharomyces-boulardii-probiotici?lang=en_US
Today I spoke to the lady whos sold me those probiotics. She’s a specialist in “naturopathic medice”…anyway she told me that it’s very common to experience these side effects during the treatment. She also told me I should have called her as soon as I started to feel bloated, she would’ve gave me another poduct, from the same line, specifically made for these kind of symptmoms. Right now, I’m not buying anything. Let’s see if I get better by my self…
I was floxed in 2007. I didn’t know anything about what levequin did to me. I also believe it’s a type of auto immune system interference. I’ve had tendon tears, neuropathy, now I’m having heart issues. I’ve always had a strong heart. I take vitamins and minerals subliguals so to absorb as much as possible. My gut is a horrible mess. Most people complain about going to much. I’m totally opposite. These are the extremely serious issues adding the newest aortic aneurysm may happen, meaning 90% of floxies need to be very aware of their aortic veins. Get screened for any weakened arteries. Add perfect teeth just breaking into pieces. All calcium depleted. I guess that was all happening prior to my discovering the cause of everything. The horrible nightmares, tremors the pain of the lightest item being placed on your leg. My 2lb cat caused severe pain. I’m not trying to discourage anyone. I’m extremely happy for those who have gotten better. I just don’t believe I will ever get better. I keep getting more things happening to me. Just when I was ok torn shoulder tendons deal with it. Neuropathy b6 and lots of biotin takes that burning pain away. Deal with it. Intercranial pressure , deal with it. Teeth breaking, heart damage. Totally messed up gut. I can’t deal with it anymore. This company needs to be held accountable for everything it’s done to us. All of us. I was okay with perhaps the four rare side effects listed as may cause dizziness, drowsiness, diahreah or constipation. I am not nor never will be okay with torn tendons, neuropathy ( progressive) heart damage. Teeth breaking , intercranial pressure. Aortic aneurysm disection or any other horrible things that it has caused. It is not okay with me at all. They know it gets into the mitrocodrial the deepest part of a humans cell. They need to figure out how to reverse it or at the very least stop it from doing more damage. No one asked to become permanently disabled. Physically and mentally. Emotionally this is the hardest thing I’ve ever had to deal with as most of you all have. I’m PISSED off knowing that 12+ years ago I was poisoned by levequin. I am extremely PISSED off THAT it’s still happening to other people. Young healthy people. All monies made by this maker of these poisons needs to be put towards finding out how to stop it. Fix what it’s 💔 broken and NEVER EVER AGAIN. Prescribe it to anyone. I would have taken my chances and I’m certain my sinus infection would have gone away without causing serious damage. I never in a million years would have imagined at 42 and in the best physical shape of my life I would have so many horrible things happen to me. I pray for those who have been hurt. I pray for you all to continue trying to get better. Make certain you get vitamins and minerals into you no matter what. Don’t ever give up. They need to be close to something that just might stop this. May you all have the most healthy days possible.
Andrea,I wondered why there is this regime of taking there three different probiotics one after another,and I think that the lady who sold you the Enterelle might be right (she’s a specialist in this,you wrote),and that the side effects from the Enterelle might vanish after having done the second part of the protocol ( Bifiselle),and the third part (Ramnoselle).After all,with this protocol you’re modifying your gut flora in steps,and the Enterelle contains a ferment,which eplains the bloating and other discomforts.
I don’t know the prices that “specialiste” asks for those probiotics,but at the webpage I pointed to (the cheap one) the Enterelle costs € 9,90 ,and the Bifiselle and Ramnoselle both cost €15 ,and that’s cheap;I spent a lot more money in the past (after the Amox and Metronidazole).I dó think this lady should have informed you about the possible side effects,and about the way this protocol works (or,is supposed to work). Maby she didn’t want to scare you of with the price of the total “package”of €40 ,but when this works it is well worth the price,I guess.
The lady might be a little bit more expensive on those three probiotics,but at the cheap webshop you’ll have to pay shipping costs.Keep that in mind.But the webshop is in Italy and the small packages fit the mailbox,so shipping costs might be low.In case you might consider to do the seond and first part of the protocol,here is the link to that webshop,again,this time the italian version (specially for you ;-))
https://geopaleodietshop.com/shop/category/14099631/fermenti-lattici/?lang=it_IT
Might be better to ask that specialiste,first,if you can finish the protocol by doing stage 2 and 3,or if it’s a better idea to start,again,with stage 1,the Enterelle,when you want to give this protocol a second chance.
lisalisa12years, I’m so sorry to hear that you’re still suffering after all this time. My heart goes out to you.
I agree that something should be done to stop this madness. The drug company knows full well what Fluoroquinolones are doing to people, yet doctors still prescribe it like candy. Fluoroquinolones should never have been used as anything except an antibiotic of last resort for life-threatening infections.
Absolutely agree. I don’t think they are good for anything. Save a life only for it to be destroyed piece by piece year after year. We’ve all have been through so much. My ankles were so distorted and swollen for about 3 years. Have problems with spans of time. Days weeks months years all get confusing I keep a journal just for when an absolute date is necessary. My Achilles tendon didn’t tear they certainly stretched out a lot and stayed swollen along with my feet. Believe caused by undiagnosed heart issues of which I’m now aware of. The swelling has gone away. I wear elastic support bands over my ankles they just slip over my heels and cross over the top of my foot. Really helps support the Achilles tendon. Still if I knew now what I didn’t know then. I would most likely say NO to any one of these poisons. Taking my chances with the infection. My primary gave me levequin a Dr I knew since I was 17 years old. I went back to him about 8 years in to tell him to NEVER ever give these toxins to anyone else. He said they’re FDA approved. I then asked him when was the last time he actually checked for updated side effects. He had nothing to say. Still trying my best as we all are. Hoping you all have a good today.
Celery juice everyday first thing in the morning on an empty stomach. Do that for about 2 or 3 weeks.
I’m going into my 13th year of being floxed. I’ve done just about everything possible to help. Being I had no idea what happened to me the 1st five years. It was able to get into my cells deep. It literally knocked me out for almost three years. I was doing okay. Then neuropathy. Then heart valve regurgitation now left ventricular functions low. I had my gut feeling great. Daily 💩 now again having issues. Chronic migrain intercranial pressure. I’m going to go back to basics beginning on Monday. Hopefully it will straighten me out again. The brain fog memory loss is the worst thing. Feels as if there’s no knowledge in my head yet I’m a college Graduate with degrees hard getting the info out. As you see In this post I’m all over the place. Going to try the lemon juice and olive oil cleanse before starting strict regiment diet and exercise. Hoping you all have the best day possible.
Hi there to you all; I am revisiting this site which is so useful more out of curiosity. I am terribly sorry to hear of all your problems, particularly you Lisa. I was floxed in 2011 and it has taken years to feel vaguely normal, though I had some remissions too. The worst symptoms for us ( I had only just remarried!) were mental: it was like I went mad. I don’t recognise myself for many of those years, at all. Only really coming back to my self when I stopped worrying about my weight which was fluctuating and started focusing on the microbiome.
In addition to probiotics, which are often best taken as Soil Based Organisms, you need to feed them with Prebiotics such as Raw banana powder or raw potato starch. This helps the microbiome restore to the 85/15% ideal of good to bad bugs!
Also Probiotics can be tricky especially if they are corn or milk based. (It happens.)
I had Coeliac disease anyway, but I have added Hashimotos and probably RA too as well as every food intolerance under the sun. BUT I now have days when I feel good again so please never give up. I have spent so much time not wanting or able to get out of bed, but when I addressed these absolute fundamentals I improved.
It’s not all plain sailing too much of any treat (wine, coffee, chocolate, cheese!) will set me back.
Thank you for a marvellous site.
Thank you for sharing,Philippa.
Hi Philippa, thanks for the infos. Never heard of soil based organism. What do you suggest? I’ve checked Garden of Life, and saw that they have this particular kind of probiotics plus the prebiotics (fiber) too. Do you know this brand. I always heard great things about it.
Soil based organisms are used for gardening,to (re-)activate the soil organisms.It is called Bokashi,and got populair during the last decennia becuase farmers noticed it brings healthier plants and bigger crops.
People with Crohn disease and other intestinal problems also use it to ferment a drink that proved to promote gut health,and with amazing success.
It’s sold under the name EM-X,and the bacterial organisms vary by state;the bacteries are “fitting” the soil of the place where you live (actually;it’s a selection of the bacteries that are selected from healthy grounds in your own area).Like the poop-transplantation,”stolen” by the “orthodox” medicine,from the alternative medicine where it was introduced and developed as an answer to heavily damaged gut flora,by AB’s,it’s used to re-populate soil ánd guts.
As far as I know,this EM is sold all over the world;here (NL;delivery to most european countries) we have this shop,but you may find shops outside Europe as well,and lots of information on the web:
https://www.emwinkel.nl/product/bokashi-starter-set-2-emmers-2-kg-bokashistarter/
The process is simple;you ferment a melasse solution with the EM-X ferment and use it as a probiotic.
The thing that pisses me off the most is that I’ve never experienced these kind of problems in two plus years, and after taking this damn probiotic it all went down the hill…
Henk mentioned aloe. Didn’t know it was used for constipation, BUT it is helpful for interstitial cystitis and the feeling of pressure, so it would be a good one to try. Maybe hit two problems at the same time. (I use the aloe caps.)
Andrea did ,and still does try it but it doesn’t seem to work;actually it does seem to do the opposite of what he hopes it,to do.
Trust me, it’s not what you did, it’s all part of the damage that is on-going. I am seven years out and I have been suffering from GI problems that resurfaced 6 years after the original episode of a few days after taking CIPRO. I have have symptoms reappear after about ~7 years. I hate to be negative, but once the CIPRO disaster begins, it becomes permanent. You will continue to have exacerbation, intensification, recycling of old symptoms… I have bilateral Achilles tendonitis that I thought was over 2 years ago.
I believe there is a direct toxicity (it’s minor component of the bigger damage), but I also believe that CIPRO triggers a destructive immune mechanism that no one is investigating. We are too focused on direct injury. I have yet to see a single research paper or even one researcher discuss the possible immune modification Fluoroquinolones may trigger. Look, it is very clear in medicine that certain infection or drugs can trigger chronic and destructive immune disorders. After 7 years of research and speaking with many victims, I am very confident that CIPRO toxicity is chronic, not because of direct toxicity, but rather it triggers the immune system. We have a a disease that is very similar to Lupus, ankylosing spondylitis…the cure is in looking at the immune system. Something to think about, except for immune diseases, NO OTHER known disease mechanism causes recurrent cyclic remissions and exacerbations. The cycles we speak about is our immune system.
Thank you for stating the obvious! I mean this, sincerely. So many people think this is a floxing witchcraft without logic, but immune response makes the most sense with most of these issues, hence the come and go of it all, plus random triggering. My Ophthalmologist also confirmed that my eye issue was inflammation , causing blurred vision, secondary to immune response from Cipro. Therefore, any immune trigger or medicine, depending on the individual, could trigger the initial immune response. This is why people go years and feel fine, then one day wake up unable to walk, typical immune.
I agree 100%. These drugs trigger something in our immune system, thus we can’t fully recover. I’m more and more sure about it. Otherwise, why so many of us develop food intolerance, for instance?
By the way, I don’t want to leave you thinking of negative thoughts. Everyone is
Different. Some people “recover” within months to a couple years. They usually have sub clinical symptoms. My life overall is much, much better. These cycles come and go, but we can still live a normal life.
can someone send me the books .in our country we dont have the permission to use credit card to buy on internet and i dont have money .please help me this my email
elmouelhimohamed@gmail.com
Ask Kerri Knox ( the author of the book) ,he’ll probably be glad to give you a few.For free,of course:
https://www.fqtoxicity.com/
Has anyone had to use contrast dye for a medical procedure? I may have to have a procedure to use it, and I’m very concerned. Thanks.
Deb
Yes me. I had a cystography a few months ago. Didn’t notice any problem with it.
I had a VQ lung scan which uses radioactive contrast dye. I didn’t want the test but my (OLD) pulmonologist scared me into it. I did fine, and I if you have read any of my posts, I was majorly destroyed by Cipro. And this was during one of the worst stages for me. Of course, we are all different.
I know we all can react differently, so we just don’t know until we try something. I am feeling some better and don’t want to get worse. Thanks much Andrea and L! How are you all doing now?
well, after several years and over $40,000 I felt like I could ALMOST return to most of my old life, in spite of having a half dozen likely permanent side effects. Then almost a year ago I got some weird congestion thing..post nasal, throat stuff, then it goes into lungs and I have trouble getting rid of it…up all nights some nights, coughing and choking. Have seen two ENTs, an allergist, two integrative doctors. Rules out most things except MAYBE mast cell disorder (thanks cipro) and I am reluctantly on meds for that, but they help only minimally, so maybe not. It is exhausting. If I could get past THAT, I think I would be ok. I have to now have special light lazer therapy after being diagnosed with macular Degeneration post cipro. Toes still numb. I’m ok with that although foot rubs used to be my favorite. Still get phantom scents, and tinnitus. That seems to be getting louder and that is really hard to deal with.
But other than that! What do you need the contrast dye for? Is there another way of getting the same info?
Hi Deb. I’m doing “good”, the aches and pain in my joints are improving very much, since I give up dairy and sugar, more than a month ago. I still have, from time to time, some low energy/sugar issues, but they’re quite meanagble at the moment. The main problem right now are my GI issues. caused/triggered by some probiotics I took a few weeks ago. And of course my old bladder issues…
Andrea,
It’s good to hear you are doing good too! I am doing better too, but it is a difficult journey with a lot of ups and downs and hopefully things will smooth out for all of us. I hope your GI and bladder issues resolve soon. We just have to keep plugging away!
Debs, I have sent a link to Lisa about contrast dyes which were published in “The Pharmacist” I hope she will post it, as it’s all about allergic re actions to the different dyes they use. I got it from ‘facebook floxies’ I am also due to get one and I won’t be using a dye as I don’t want to take the chance. Apparently the dye only helps the technitions to see 10%MORE. Again we are all different and others have had it with no problem.
Thanks Barbara! So are you getting a heart cath without contrast dye?
No Deb, I’ m getting one for the bladder. I will not have any dye’s. I don’t care what they say.
Also iodine contrasts have the same dangers.
These contrasts have never been good for anyone. Now that we’ve been floxed what are we supposed to do. I try to get ultrasounds instead of the CT scans or MRI. Going for a 2D ultrasound of my heart this week upcoming. Left ventricular function was 55%. I’ve always had a strong heart. I might need a pace maker. At 57 years old because I put to much trust in my Dr. One thing it’s taught me was never to do that again. I research and show absolute proof of what these drugs have done. We need to keep spreading the word and truth about them. No matter what. Saving one person from these toxins is worth all the effort. Have the best day possible..
Thanks Deb xx
Hi Deb,
Here is the link to the article that Barbara referenced –
https://www.uspharmacist.com/article/intravenous-radiocontrast-media-a-review-of-allergic-reactions
My take on it is pretty much the same as what has been noted. Some people seem to do fine with contrast dye, while others have horrific reactions. I don’t know that there’s any way to tell ahead of time what kind of reaction you’re going to have. Personally, I would avoid it if at all possible. That’s just me though.
Regards,
Lisa
And also, these are reactions for “normal” people that have not been floxed, which makes it all such a huge unknown.
Hi Barbara – I had a contrast dye I think the last time I had a CT scan . They injected something that made me feel very hot for a few minutes. I was ok afterwards. How is your husband doing? D o you think your floxing has brought on bladder problems?
Hi Madge,
To answer your questions, first as far as my husband goes, it’s been a nightmare and the worst time if my life. Worse than my flox which I never thought was possible. We are only now seeing a chink of light at the end of the tunnel. They don’t tell you that when therapy is finnished it gets worse before it gets better. I have watched him very carefully. There is a notice above his bed saying no quinolones. He’s been in hospital for a week after passing out twice. Hopefully he should be home on Monday. They tried to give him Nolotil which is a pain killer that is very dangerous to Northern Europeans. Southern Europeans are okay with it. When I told the oncologist it was well documented, her answer…I don’t know all the side effects of everything. Even though this drug is well documented and she uses it all the time. I wonder how many patients she’s damaged ?????
As for me they found a small bit of blood in my urine after a routine test. I had no symptoms, just lots of bathroom visits during the night. I don’t know if its the stress of everthing I’ve gone through or what. It could be nothing hopefully, as I have no blood in any urine using the bathroom. First they are doing an ultra sound, then a CT, then an MRI. Why I need all three I have no idea. The urologist told me about the contrasts there are two, and I’m going to refuse both. I could be okay with the iodine one but I’m not taking the chance. It’s perfectly possible to do it without any dye, they just have to study it more.
The stress I have experienced and all the travel I have had to do has caused my lower legs to swell up to over twice their size and my feet and legs burn. I was pretty on top of it before. I have taken Kratom for the pain which has really helped bur I have to limit it or you can become intolerant to it and like any allopathic drug you can get addicted to it if you overuse it. But I’m so glad I’ve had it as I have been in agony. I don’t know why my legs swell up, because after levatating them for some time they will go back to normal. It’s when they are down, even sitting in a chair they swell. I actually came to a stop when visiting the hospital one day as I just couldn’t walk any further the pain was so bad. I havn’t had that for a long time.
Lastly, my opinion of the medical profession has not changed. I have encountered many arrogant Doc’s Nurses on this journey with a balance of some really good ones. Like the amazing compassionate surgeon that saved my husbands life.
I have found with the ignorant ones, that if you don’t speak ‘fluent’ Spanish they talk AT you at ninety miles an hour very loudly. They don’t give you a chance to at least try to communicate. Some of them should bever be in the medical profession.
Hopefully when my husband comes home we can both continue to recouperate. I’ll let you know how I get on without contrast.
Barbara,
So sorry you and your husband both have been having a hard time. I would think the stress of all this takes its toll. I hope you both are feeling much better soon and your procedure goes well without the contrast dye!
I’m really sorry Barbara. You have had so much to get through it’ s really hard to have all this ongoing stress. Don’t worry too much about the microscopic blood. I have had that several times in the past and the ultrasound scans have shown nothing wrong. They are just a drag with having to drink all the water first. I bet it could be to do with the floxing. I am lucky in that I have no language problem when I go to hospital but I think it is easier to become fluent in French . I think Spanish is the hardest of the Romance languages because of the accent. But I still have had problems with arrogant doctors! Is the burning a return of the neuropathy? That probably has been brought on by all the stress. Hope your scans go ok. Bon courage
Aaaaah thankyou for that reasurance Madge. A couple of friends have told me the same thing, so I’m hoping it will be okay. Not sure I could take any more anyway.
The good news is, hopefully my husband will be home today and he looks much better thank goodness. I think once he can eat by mouth again he will improve even further. Quite a few things he went through were similar to being floxed, same re actions as fluro’s, like chemo are chemo drugs, so I’m not surprised.
I have found that ‘stress’ plays a big factor in my pain flares. If all is well my pain levels go right down. I was at a stage I could walk for about half an hour with no problem most day’s, and during the night pain in my legs or ankles, achilles or both would stop after a bathroom visit, weird. But during this episode walking a lot more caused agony and massive swelling. Now I am getting less stressed and elevating my legs they are improving. This like all floxie symptoms come and go and change. I have done everything to try and remedy this, but it looks like I am going to have to live with it for life. Ah well beats the alternative I suppose. Thanks again Madge, it helps when you hear this may be okay
My husbands oncologist is horrible, but he say’s this….”.look we have a desert to cross and we need a camel, so as long as she gets us across the desert who cares” lol.
I had contrast dye post floxing, no issues.
Gadolinium used in MRI’s can cause significant neuropathy. If you already have neuropahty because of CIPRO/Levoquin, be very, very careful. Find an alternative imaging technique if possible. This is a warning from the FDA. Don’t forger that the FDA warning is far lighter than it can be. Just think about the Fluoroquinolone warnings and the FDA.
https://www.fda.gov/Drugs/DrugSafety/ucm589213.htm
YIkes! After I read your post (thank you) I found this. https://articles.mercola.com/sites/articles/archive/2014/01/09/gadolinium-mri-contrast-agent.aspx
I need to find out what they use in the CT scans. I’ve had a few and didn’t notice anything drastically change with my neuropathy. I use biotin and B6 daily keeping enough in my system really helps with the burning pain. Not to much with the numbness. Greatful for any type of relief. Mostly worried about my heart now. Unbelievable how bad this poison is able to destroy our bodies from within the deepest part of a humans cell. I certainly hope they’re able to figure out how to stop it. I don’t believe they’ll be able to reverse the damage already done. Just praying for a way to stop it. It’s definitely not a rare or temporary thing. Going into my 13th year and it’s one thing after another. Hits the tendons cartilage nerves and muscles. In that order. We need to protect our hearts. Have the best day possible.
IT varies. Often they don’t need to use any contrast dye at all. (That is what I would ask for.) But the other downside is that they are high in radiation. That’s why if you can get the same information from an MRI that would be the way to go.
Chuck Norris’s wife had a horrible reaction to gadolinium contrast dye. Here is one (of many – just google it) article about her experience –
https://www.washingtonpost.com/news/to-your-health/wp/2017/11/08/chuck-norris-claims-his-wife-was-poisoned-during-mri-scans-sues-for-10-million/?noredirect=on&utm_term=.606a7281a892
L,
I can imagine that a lot of coughing and choking would be VERY exhausting and worrisome. I’m glad you got back to an almost normal life last year and hope the coughing and choking gets better soon and that there is medicine you can take to help a little. You have worked through so many FQ symptoms, so you will probably find a remedy for this too! I was on this site a good bit early on, and I know you have helped a lot of people including me and hope you can find your coughing remedy soon!
I have my annual cardiologist appointment tomorrow and I’m just trying to prepare in case I need a heart cath. I haven’t been able to take cholesterol medicine since I got the FQ toxicity 1 1/2 years ago.
well you know after the cipro I got pericardial effusion (fluid around the heart). They want you to take nsaids, which I of course could not. And I don’t think they would have even helped. I was taking huge amounts of turmeric and other natural anti-inflammatories, and nothing changed. But I did get “lucky” in one respect. Believe it or not I found an integrative cardiologist! (She is Harvard trained, but from Myanmar, so has a nice east/west balance.) She was the FIRST MD that, when I told her my story (and she could see I was just a quivering, gasping, shell of a person), she just shook her head, and took notes. She believed everything (how refreshing!) and started making recommendations that did NOT involve drugs or surgery. She wanted to take a “wait and see approach,” and scheduled me to come in every 6 months for an echo. (I drive 1 1/2 hours each way to see her, but it’s worth it.) The amount of effusion never grew larger, so we did not do anything with it. (One time when I wasn’t feeling too great and didn’t want to make the drive, I had the echo done at a local hospital. The cardiologist on call got all worked up about the amount of fluid, and he got me freaked out. (He also said he would PERSONALLY send the dvd to her, and of course he didn’t.) Anyhow, I finally sent it to her, and she said it was the same as it had been, and try not to worry and schedule another 6 month appoint. After a few years of this she said chances were pretty good it was permanent. But then when I went back a couple months ago, it had actually gone down some!
I know she always begins first with dietary changes and exercises. I think she would use drugs only as a last resort. If you are interested, she has a book called “Your Vibrant Heart,” and her name is Dr. Cynthia Thaik.
L , Hey it’s been a long time since I’ve been around. I just read about your heart issue. I believe we were floxed around the same time I was given Levequin in 2007, 750 mg for 10 days. For a simple sinus infection. Just wanted to say I started feeling better the vitamins and minerals along with 3 years of colostrum 3 times daily now 3 times weekly actually help my joints knees and shoulders. I’m having heart issues as well first it was regurgative valves now my left ventricular function was at 55% last year. I quit smoking 5 years ago I instantly blew up with water. I believe that the nicotine was being attacked and when I quit it began attacking me again. Almost 13 years later I’m still fighting the side effects. I don’t believe we ever truly get better. We can only keep it under control by hit and miss options we all share. I have to get a 3D ultra sound of my heart to see what’s going on with the left ventricular. I bought compression pants that really helped me to get rid of the fluid and keep it from building up. I unfortunately had no choice but to take a heart medication prescribed diuretics only take when I start coughing. That’s a sign of fluid build up in my lungs. I drink filtered water day and night and I use the bathroom every constantly. Hard getting a good sleep but better than taking another med. I never would have believed that this could still be happening not only to us, the older Floxie cases but to so many more people. Harmed because of the revolting greed of BIG pharma. It’s heartbreaking. I had a melt down a few days ago. I was on a rant about how horrible this really is. Then thought about how many people didn’t survive this evil mess. Some not even knowing what caused it all. I also wanted to say I had radioactive contrast and didn’t feel any thing go off inside. I just drank a lot of filtered water and flushed it out. Having issues with my teeth breaking also. Being this leeches out every possible nutrient in our bodies before we know what it actually does. Please all newly floxed be sure to get those vitamins and minerals in using subliguals is a cheaper alternative to IV infusion. So much more than I ever thought possible. I tell anyone who will listen to never take these toxic antibiotics called Flouroquonolones. They don’t have ” Rare Side effects ” They will hurt a human body in ways you can’t imagine. It can happen in a day, week month and years later. Treating the symptoms is our only hope. Until they find a way to reverse or hopefully stop it. We are Floxies and sadly most of us will always be. Some have gotten better than it hits again. Some stay better. We are all different and react in different ways. Tried and true definitely magnesium C Biotion & B 6 takes away my neuropathy pain. So so much but to have a few good days and not feel bad it’s a good thing. One day at a time. Praying for all to find whatever it is that helps you. Hit and miss I stick to the aforementioned basics. I’m trying Hi Lyte just started yesterday it’s concentrated electrolyte replacement. I’ll let you know if it helps or not. Be as well as possible.
no actually mine was in 2015. and I believe we do get better. In spite of current issues I am LIGHT YEARS from where I was. I was certain I was going to die (and wanted to for the first year or so.) Nutrient IVs helped me tremendously and prolozone injections fixed my knees. The only real excruciating pain I had was mid back and that went away soon after I started the IVs. Also had horrible pelvic pain that too is now gone.
Thanks much L. How nice to find a doctor who believes you about the FQ toxicity. I will see if I can find Dr. Thaik’s book. I like the idea of starting with diet and exercise instead of drugs. I am trying to control my cholesterol with diet and exercise, and I’m already thin so my weight doesn’t cause the high cholesterol. It’s so good to hear, even with some lingering symptoms, that you are doing SO much better!
I would not worry about not taking medicine to presumably reduce your cholesterol. The entire hypothesis of cholesterol causing heart disease is rubbish – bad science promulgated by people like Ancel Keys whose work has been exposed as a fraud and backed by Pharma who are making millions out of poisoning people with statins that are also mitochondrial toxins.
Cholesterol drugs are a scam. Your liver makes cholesterol and your body needs it. If you have a fatty liver you might need to eat less fat and protein and less processed food and more fruits and vegetables. . I know people on disability from statin drugs
Thanks Madge and Bob for taking the time to reply and give encouragement. I hope you all are doing okay!
Bacteriophages from the republic of Georgia are available here.
Bacteriophages are viruses that kill bacteria (and only bacteria) and are a great alternative to antibiotics.
https://www.alibaba.com/product-detail/bacteriophage_50043042501.html?spm=a2700.7724838.2017115.99.10d07929qPM3bA
Barbara. I’m so sorry to hear you and your husband have been struggling. I will say a prayer for you to find strength through this and definetly healing in the next few weeks. I’m sure the stress of it all is ramping up your symptoms. I can only imagine it is hard to find peace and calmness while in the middle of a storm. Keep us posted on your MRI and how you are doing. Meanwhile try to take a deep breath and ground yourself. Try to find a small piece of quiet and calm each day. I wish you well and that you and your hubby find healing soon! I will keep you in my prayers. Hugs…..💐💝🙏🏻Dee
Your so kind Dee. Thank you very much.I wish you healing to always xxx
You are right about stress making the floxing symptoms worse. Also about it not going away. In Dec 2017 I pulled something behind my left knee getting off a motor bike – just standing up on the pedals! I could barely walk for a few days and my husband had to go and buy me a walking stick at the pharmacy. It took 9 months before I could go downstairs not one at a time and then I had to go slowly and grip the bannister. Now the pain has come back and also extends slightly higher up . Picking stuff up off the floor hurts and it’s back to going downstairs one at a time! I have started the wisteria pruning today and have to be really careful not to stretch up too much as that triggers my rotator cuff tendonitis as does sweeping .polishing or any sort of cleaning. At 66 I feel like 86 ! Do let us know how your scans go. Hope your husband is continuing to improve. It must be a relief to both of you to have him home.
I have just purchased these e books and they started loading and then it has disappeared yet I have been charged through PayPal. Where can I find them?
Hi Guys,
so went for the cystoscopy and for my surprise I have chronical inflammation of my bladder and got another 30 days course of antibiotics. Then went to gastroenterology and they took my blood, although I was on pretty harsh gluten and lactose free diet (for 6 months) my both IgA results are worse than before. I refused colonoscopy because when I went for EKG (like pre surgery procedure) I saw the results and all my heart values are off so I don’t want to risk deep analgosedation. The doctor wants me to go for gastroscopy and then take something like Prednison.
I am in very unhappy state. I am pretty sure that this was caused by Ofloxin I took back in June. I am also very scared, I hoped that things would get better but seems it’s getting worse. Well at least the diarrhea stopped.
😦
so sorry to hear all this Attsy. I would not risk a colonoscopy either at this point. I hate that they recommended 30 days of antibiotics. I wish you could find a good integrative MD or an nd that could recommend a different way to go. I also don’t understand why that would be the first choice, since high IgA can indicate inflammation or autoimmune disease. How do antibiotics treat that? And many of us show similar conditions to autoimmune diseases. That is why doctors always assume it CAN’t be the cipro, and must be lupus or Epstein Barr, or chronic fatigue, etc. Do they have other info that your kidneys are compromised?
Uh, and prednisone on top of it. I have had three doctors now try to treat me with prednisone. Can’t / won’t do it. Are you somewhere where you could get a second opinion from a doctor who is more integrative?
Hi L, thanks for the answer. The antibiotics are for the bladder inflammation and were prescribed by my urologist.
The gastroenterologist (another and a new doctor) wants me to take corticoids because of my IgA level which is not getting down.
I wanted to get another opinion from another gastroenterologist but I have a problem now. I am BROKE – completely broke, as I was unable to work for last 6 months I have already spent all my savings. Now I have to go to work although I am extremely tired because I can’t afford to pay my health insurance by myself anymore (now my employer is doing it).
Here if you want to visit a specialist you need to have a recommendation from your GP (if it’s paid from your insurance), my GP refused to give me anymore recommendations because she can’t understand why I have problems with the doctors. It’s possible to get a new specialist (without recommendation) but it’s very expensive – you literally pay everything by your own and even many of them still want the recommendation.
Another problem is that I tried to suggest to the new gastroenterologist that maybe ofloxin could cause this, but he told me “it is not possible, I have never heard of it”, so then I rather kept my mouth shut. According to the reviews on the internet, it seemed this doctor could be more open, but unfortunately he is not. And that’s why I again don’t trust him, although his behavior was completely neutral and professional.
oh god, I know. I have spent $40,000 I didn’t have between over a 100 IVs, NDs, acupuncture, supplements, other treatments. (but the toxic and the ignorant doctor—yeah, insurance covered that!) And they are all so enamored of steroids!!! Steroids destroy stuff.
Didn’t know they gave antibiotics for inflammation. The inflammation is probably from the flq. (oh, and the “It’s not possible I have never heard of that,” is ridiculous. BEcause HE never heard of it, it couldn’t possibly happen. more arrogance.
I really hoped to find posts and comments related to Botox. But, the keyword search on this site never works for me any longer. Anyone else have issues with the keyword search on this site?
Hi Anna, I have the same problem, I either don’t understand how to do it or it’s not working….
Thanks, Attsy! I am using the Key search in the upper right corner of the Floxie main page. I also tried Control-Find on our main page to search for common words. Neither works for me, so there must be something wrong with the site. Not sure. Glad to know it isn’t just me! 😉
Hi Anna, I have botox and have never had any issues with it but each person is different
Thanks, J. Nice to hear how others have handled it after floxing. I also handle alcohol and coffee like a champ, and other people seem to not be able to deal with that. Odd that we all have somewhat different triggers.
Henk, I’m answering you here, about the EM-X. Very very interesting. Thnaks a lot. Did you use it? What do you think about this product? check the ingredients. Thnaks a lot.
https://www.gardenoflife.com/content/product/primal-defense-ultra-probiotic-formula/
Hi Andrea,I gave EM-X a try but failed to get the ferment process starting.A friend of mine tried it,but not for consumption but for his garden.His batch fermented very well.I think I gave up too soon on the fermenting but at the time I was very sick from the AB’s,still doing my daily job at the archeology,and had spend hundreds of Euro’s on pré- and probiotics,natural anti-Candida remedies and other miracle cures.
The EM-X was the last thing I wanted to try,but in the meantime I had built the Beck Blood Purifier and the Magnetic pulser,and within 2 weeks my guts were “normal”,and I threw out the EM-X.Might have tried it with an other batch but I was very depressed (just lost my favorite brother;he had blood cancer) and could hardly keep up my archeaology job and my housekeeping and the extra care my food needed.And I was physically,mentally and financially broke.
I’ve read quite a few good things about Primal Defence (this Ultra wasn’t there,at the time),but most of it was mainly promotional.A few good reviews on forums,too.But at that time I couldn’t find it here.So;I cannot give you a review out of own experience.It is about as expensive as the course you started,but stopped after 3 days.Some strays,like the Saccharomyces Boulardii,are the same in both.Main difference: The Primal Defence is used over a prolonged time while the course,starting with the Enterelle is supposed to be used once,over 36 days,with three different “recipies” (compositions).
Unrelated to floxing (likely related to two accidents I’ve had), I have had a 24/7 headache for a year that doesn’t feel like a traditional headache. It encompasses my face, back of head, neck, side of head, etc. I often feel every nerve in my face and head. And for those who followed my painful tooth saga, the tooth STILL HURTS but they believe it isn’t an infection anymore, but the nerves. They are saying it’s atypical trigeminal neuralgia, atypical facial pain, atypical neuralgia…all sorts of “atypical” things that I hear as “We don’t really know what you have but we know it hurts…”.
I’ve tried everything natural: naturopath, acupuncture, osteo, physio, etc. I recently started with a chiro and homeopth, but every single doc (neurologist, dentist, etc.) would really like for me to try low-dose antidepressants to cut the pain, and then wean off. Is this a bad idea post-floxed? There has to be others out there who are floxed and on much higher doses? Is it possible to be on them for say, a year, and then get off successfully before my body has too much of a chance to attach to them? 25mg or less of Nortriptyline? I’m still healing from being floxed and don’t want to mess anything up, but I also don’t want to be in pain if this could help.
Melissan,treating tooth pain with antidepressiva? That’s the most absurd thing I ever heard!
Another reason to avoid antidepressiva is the fact that many of them,for instance the widely used Paroxitin (Paxil) have fluoride:
https://slweb.org/ftrcfluorinatedpharm_antid.html
I think that I have the same problem,since about 15 years,but,most of the time not as severe as it was,back then,and as it is in your case.It think it’s caused by dirt and bacteria (among other microbes),causing an infection.My problems were caused by a severe magnesium defficiency (Thanx,Losec/Omeprazole,for 15 years!),but,of course,the dentist and his assistence put the blaim on the patient,me.They don’t know about the importance of magnesium for healthy teeth and gums,at all.
This colony of bacteria lives on food that enters the tooth pockets because the binding between teeth and gums is,for reasons like mag.defficiency,damaged/destroyed.Then,this infection puts pressure on the nerves.Same thing happens to me,all the time:when I pay extra attention on cleaning my teeth and gums,the binding restores,closing the pockets.The unpleasant,sometimes really nasty taste (and smell)disappear,and 1 or 2 days later I get a severe headache,in which my jaw,and neck,shoulder,and the right side of my face/head are involved.Sometimes I even get a small temperature rise,but no real fever.
The only painkiller I use is Paracetamole,and this,most of the time helps to keep the pain acceptable.But the only thing that “helps”,in the end,is brushing my teeth only just enough to clean the teeth itself,not the gums.Than,the infection finds it’s way to the outside,the nasty taste returns,sometimes my sweat and even my urine get a nasty smell,and the pain,headache,shivers,vanish in a remarkably short while.
I’ve asked my dentist to remove that tooth,several times but he refused it and sent me to his assistent for a throughout cleaning. I tried that several times but every time with the same result,as described above.After I asked him for a new tooth protese (upper side;caused by the Losec/magnesium deficiency),because the old one (my first one) was totaly worn out after 10 years,and didn’t fit anymore,he tried to talk me out of that.Then I didn’t go there for controls for 3 years after which he wrote me a letter,informing me that from that moment on he refused to have me as a patient anymore (I wasn’t lucrative for him).This action was based on his “house rules”,which I new nothing about,nor had I ever seen those,or got a copy.So,now I don’t have a dentist,and here a new dentist,or doctor,is very hard to find.The Netherlands,twenty-first century,science based medicine.
So,I cannot help you now,although I keep on searching for a solution. Taking antidepressiva isn’t a solution;it’s just asking for more problems and the doc’s that give you that absurd advise are best to be avoided.Even let that tooth be removed might not solve the broplem because the dirt/infected tissue might,for a part,stay behind and,as soon as the wound is healed,cause even bigger trouble.You and I will need very good and professional help for this problem to be solved.I hope we will find a suitable solution,soon.
Today’s article by Dr.Mercola might interest you,and others:
https://articles.mercola.com/sites/articles/archive/2019/02/09/root-canal-infection.aspx?utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20190209Z2&et_cid=DM265520&et_rid=539959978
Henk, thank you for your helpful insight.
I have head and neck and face pain (nerves, etc.) that are unrelated to the tooth though, and started one year ago. I was hit very hard in the back of the head/neck with a soccer ball at close proximity, and a year prior had bad whiplash from a car accident. That pain is different than my recent tooth pain, though because all of my x-rays and tests look clean, they want to lump in my tooth pain with the neuralgia. It COULD be possible that the tooth pain is not tooth pain, but nerve pain coming from my face. That is possible. But even if it’s not, what do I do with this 24/7 worsening head and neck and face pain? Therein lies the rub. And that is the reason for the low-dose antidepressants. Do we know if Avantyl has fluoride in it?
I will say this: I feel in my heart of hearts that my tooth pain is bacteria caused too, because two years ago it happened, and antibiotics fixed it. And while I was on antibiotics for the 3 days two weeks ago, the pain was almost gone, but I couldn’t tolerate the antibiotics and got off of them and the pain returned. So my question to you is, do you go on antibiotics when that pain starts for you? And if not, how long does the pain take to go away all on its own and do you do anything special for it to go? I really feel like i’m dealing with two separate issues: the tooth pain and the head/neck/face.
Something else you might want to investigate…PRP injection (platelet rich plasma). I know they have been used for knee pain, hip pain, so I imagine they might also be used in the neck area.
Melissam,Aventyl has a quite nasty set of adverse reactions,but,as far as I can find,has no Fluorid:
https://en.wikipedia.org/wiki/Nortriptyline
I think that the whiplash,followed by the ball-accident might be the main cause,but I don’t see how Aventyl,or any other antidepressivant might help here,and the adverse reactions could make things even worse.
Is the trigeminal neuralgia diagnose confirmed by a second opinion? It sounds logical,after the whiplash and ball accident,but taking any (synthetic) medication on base of a “suspected ” trauma or illness isn’t a wise thing to do.
I have a hernia in my lower back,with pain,sometimes in my left,other times in my right leg,and I discovered the best way to get rid of the pain,for a while,is,to use Paracetamol for a few days to lower the pain,and move as much as possible (ride my bike works well).Because the pain is on a lower level,my muscles relax,and,together with the movements,the oppressed nerve comes loose,and the pain resides for a while (several months,most of the time.
Something like that might be the reason of your pain (or,maybe,you have a neck hernia;somebody I know got one and had to stop working;got almost crazy from the headache and pains in a big part of his upper body).Lowering the pain is essential for relaxing the muscles because the pain cramps the muscles which,then,keep the oppressed nerve from getting free/loose from the oppression between the dorsal vertebas.
When a nerve is oppressed the pain can covver a big area of the body;a lower back hernia gives pain in the back,the buttock,the upper- and lower leg.Sometimes the pain in the buttock and the leg is worse than the backpain,confusing,because the cause is in the back.The toothpain might well be connected to the head-,neck- and backpain in a way most people,medics,included,wouldn’t think of.
I would be very wary of using wikipediea for a reference. They are written by virtually anyone, so this could very well be written by the drug manufacturer. (I know when I was doing a masters thesis we were forbidden from using the site as a source)
Ugh. Thanks Henk. I am happy for no fluoride but not happy for the nasty side effects. They are telling me the dose would be so lose that I could very well escape those side effects…and I could always get off…I just don’t know. I can’t take anything orally that stops the pain at all, nothing. I agree, I need to stop the pain to allow everything to calm down and relax the muscles…the pain is snowballing into more pain.
I have had spine MRIs. I have a bulging disc in my neck, but not herniated.
No, I have not had a firm diagnosis of trigeminal neuralgia. It is the dentists that believe that’s what it is (three dentists and an endodondist). I’m on a waiting list to talk to a facial nerve expert.
I was officially diagnosed with atypical facial pain. I feel tingly and numbness and burning in my neck, scalp and face all day long, but some days it is so bad. Frustrated. Thank you for weighing in with your knowledge!
I am so sorry to hear about your pain,Melissa,and I would wish to be able to help you more!
On,what I read and regarding the low dose I think you might give Aventyl a try.And ask if it is safe to combine the Aventyl with Paracetamol,or,even better,with CBD oil.The CBD oil is 100% safe,works very well for a lot of people and,as far as I know there’s no risk of any interaction with other medicines.
Try to find CBD-oil with a high CBD-content,15% or more;most CBD-oil (2,75-3 %) is useless,and very overpriced (it’s a hype,at the moment,with hype-prices :-((
Henk, thank you for your kind and thoughtful words. Thank you for taking the time to look it up for me. That means a lot, and I feel less scared to at least try, I’m going to give myself the month on the homeopathy first.
You’re welcome,Melissam,and I think that’s a wise descision.You might consider to try CBD oil,in the meantime,to ease the pain and it will probably help you to relax a bit,as well,while you’re using the homeopathic’s.
Personally, I would not go on antidepressants. I say this as someone who was on them for decades. They have their own set of side effects. (I am surprised this was suggested for pain also, especially since a common side effect is headaches!.) Have you tried cannabinoids?
Yes, I hear you. Low-dose antidepressants is very common for help treating this type of pain where it relates to nerves and such. The idea is for me not to be on it forever (hopefully), but to go on, forcing a reset and healing, and then get off. I don’t think that cannabis oil would have the same effect. I need to cut the pain signals, and then get off. Do you think that being on them would interfere with the floxing?
Also I am currently trying something homeopathic for this. I have no clue if it will work, but the homeopath/naturopath felt very confident…we will see….I still am not convinced my tooth pain is related, but I just want one of my many pains to pass!
well, as Henk pointed out many of them contain fluoride so at the very least I would rule those out
Yes, you are right L. That is for sure.
Melissa, sorry to hear you are dealing with pain in your head, neck, face area I hope you can maybe find a more natural pain reliever to help you?? I know you have tough decisions to make about treatment but I would try to avoid taking an anti depressant and get more opinions?? You said you had a relapse from taking the antibiotics. Are you doing better now? Have most of your increased symptoms calmed down again? I hope so!!! Keep hanging in there. Prayers for your healing!
I don’t think you can combat trigeminal neuralgia naturally :(. I think these low-dose antidepressants are in my future :(. I’ve been fighting it all year, trying everything natural, but it’s getting worse and not better. It’s not just the trigeminal nerve, but my entire face goes numb, etc. I’ve had so many scans and tests done at this point to rule out other things (MS, etc.). I’m with you Dee, but I’m stuck between a rock and hard place. I’ve had too many doctors tell me that if I don’t cut the pain, my brain will keep registering pain…it is a neverending cycle.
As for the relapse on antibiotics, it is not gone but much better. I’m still worse than I was, but very manageable and I am able to care for my 4 young ones and the household while my husband is away, no issues.
I’ve had so many opinions now. There isn’t a doctor that will treat a-typical facial pain or trigeminal neuralgia with anything but low-dose antidepressants (or Lyrica…). It’s very typical. I have a friend who was able to go on and then a year and a half later, come off of it and his pain stayed away. I guess that is the hope, but I don’t want to cause new issues for myself. Believe me, I’ve been fighting this for a year! It’s just at what point do you say, I have explored all options, and now I need the meds? That’s where I’m at.
Hi Melissam, I have also trigeminal neuralgia and tooth pain which is starting to get worse, so I hoped to find something which might help.
I was also offered antiepileptic pills but I refuse to take them (same as with antidepressants). I don’t know but I can’t recommend antidepressants especially when you are floxed.
Now I try some collagen laser and I was offered botox. Unfortunately laser doesn’t seem to help me.
Wish your pain would get better or you find some good solution. I understand, this is hell :/.
oh Attsy :(.
Which tooth is giving you problems? Mine is back left, at the bottom.
How long ago were you diagnosed with TN? Is it one cheek or both? I have pain on all three branches of both cheeks, but primarily on one cheek.
There must be so many floxed people on antidepressants, no? Does one interact with the other? I know we are both so reticent to take any new pharmaceuticals, but I’m trying to think it all through now.
It has been now over three months (but pain is since September 2018), I don’t know to which incident I could connect this – to my botched wisdom tooh job or to being floxed?
Pain is in my left side, upper jaw, the last tooth, it’s like sharp shooting pain spreading from cheek to nose, ear, bottom jaw, causing other teeth on the left side to hurt and also gives me headache. Sometimes it’s mild but sometimes is really bad.
I guess they are, but I took antidepressants for many years for IBS and it played badly with my stomach. I have now really bad stomach issues after being floxed so I don’t want to risk antidepressants. But maybe the pain will drive me crazy one day and I will take them – guess I never now, but I try to avoid them now.
Anyway I am very sorry for you :(. Do you know if the antidepressants really work for this kind of pain – I mean do you know someone who took them and it helped?
I’m so sorry Attsy! Yes, they are all saying the low-dose antidepressants would help for this. I just talked to my dentist who’s friend is on them for trigeminal neuralgia.
I just pray it all goes away and we don’t have to deal with it. If this homeopath fixes me naturally, i’ll give you his number! lol. I am hopeful but realistic??
Hi Melissa,
I am sorry too for your pain especially with four young children. I would avoid anti-depressants if at all possible. But I know you are in a tough place. I have heard cannabis oil is good for pain, but I haven’t tried it. I took a very low dose amitriptyline for a few months several years ago and it helped the pain and I had no side effects. It didn’t solve my problem though. But I have no idea how it would be to take it after being floxed. Hope you find something that works and feel better soon!
Deb
Thank you Deb! So your pain was not helped by going on the low dose antidepressants :(. I mean, I guess it was helped while on it, but not when off. If that happens I don’t know what I’ll do.
My timeline is:
– Car accident January 2016.
– First floxing July 2016. Did not know what was happening, and it was horrible. Healed after 5-6 months.
– Soccer ball hitting back of my head which caused a lot of issues: August 2017.
– Head pain and subsequent face pain: February 2018.
– Second floxing: May 2018 (actually because they thought my headaches were caused by sinus infection).
So there you go! This is the reason I don’t think that the floxing was the cause, though i did have a lot of scalp and face nerve pain post second floxing that came around last summer and left after a bit, and came around again after the amoxicillin reaction a couple of weeks ago. THAT part may be the floxing (actually hoping that is what it is so that I have a good shot of it leaving again).
I’m praying this homeopathic stuff will work and that will be the end of that! And the Kraton I’ll have to look up.
Melissa. Was this pain brought on by the floxing last year or the soccer ball/whiplash incidents??? I am glad your floxie symptoms are calming down again! That is one silver lining in all of this!! I know Barbara says a lot of good things about Kratom for pain. Don’t know if I spelled that right?? You might ask her about using that????
Melissa. What homeopathic remedies are you on?? I do a lot of homeopathic remedies since being floxed for my symptoms!
oh nice! I don’t know what this stuff is, but here are the names:
– Aconit D4 – Cedron D4 – Colocynthis D6 – Kalmia D3 – Verbascum D2
– Colocynthis 5CH
– Rhus Tox 15CH
– Chamomilla CH
– Aconit 15CH
Let’s hope this all works 🙂
What are your symptoms Dee? When were you floxed?
Melissa , I don’t recognize any of those remedies except for Rhus Tox. I got floxed in June of 2017. I am about 19 months out with about 4 lingering symptoms. Early wakeup, mild anxiety, pulsating tinnitus and several bathroom visits (loose) all taking place early morning when I wake up! My system ramps up in the morning! My days are pretty good though. I had at least 20 symptoms for the first several months. I was hit pretty hard as I couldn’t go back to work. I am 62 so I retired last January 18. I was a PE teacher for 38 years!! This floxing turned me upside down!! I’m probably about 85% recovered?? My homeopathic remedies I think are different then yours?? I am on Q doses which increase every 10 days. Been on remedies for year in a half. I work with Mr Mueller over the phone who has treated many floxies world wide. I even take homeopathic cipro (which sounds scary) but is suppose to help stop the cipro effects over time?? I’m on 6 different remedies. Hard to know how they are helping but I’m improving and older so I’m hoping they have been helping me!! 🙏🏻🙏🏻
Wow Dee! This is so interesting. I didn’t know any of that (homeopathic cipro???? yowza!). I agree, it sounds like you are doing so well. I was healing nicely too after the second floxing, until antibiotics 2x and reactions to both, but I’m getting back there. I’m sure i’ll be fine. I just need to figure out this head/face/tooth business. I pray I can get passed this pain.
I will keep this homeopath you talk to in mind…didn’t know there was someone who has helped many floxies like that. Very cool.
Yes. My homeopath actually created the homeopathic cipro. It is my understanding that his treatment methods are somewhat unique compared to other homeopaths!! You will get better soon especially if it flared up from the recent antibiotics! We will get there!!! One step and one day at a time!!!
Sent from my iPhone
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Lisa, what info do you have on Biltricide (Praziquantel ) for bilharzia.
Any Pharmacists on here I can ask about Biltricide (Praziquantel)
Melissa, how are you doing?? Are your symptoms getting better and improving?? I hope so!!!🙏🏻🙏🏻
Dee, you are so kind to check on me! I started the homeopathic stuff one week ago today so too early to tell. On Tuesday I felt my nerve issues worsening (like, vibrating skin, nerves in my body feeling numb like a mask on my arms and legs and spine and head…). I don’t know what’s from Quinolones, what is from my accident, what is just something that is happening to me…it’s all running into one another.
I feel the panic feeling is totally gone. I feel happy and have more energy since the relapse. And that is great news since the relapse was just a few weeks ago! I got back on my bike. yay!
I hate that I bend over and my spine starts tingling. I’m not quite sure if that is normal quinolone stuff that takes longer to heal I hate that I’m having this tooth pain that is really my trigeminal nerve. So overall, doing very well and moving around as usual, but moving around with constant issues/pain that I didn’t have before.
Melissa,homeopathy,most of the time,works that way.I don’t have much experience in it (I’m one of the personds in whom it doesn’t seem to work),but as far as I know,in the beginning things seem to get worse,and,as soon as your body starts to re-act,the improvement sets in.I hope it will do you good! Keep us informed,please.
A friend just tole me the same. I pray that is all it is: getting worsening sensations before they subside…that would be very worth it.
I wish it had worked for you :(.
I just saw a commercial for this device and thought I would post for those of you dealing with pain issues. I know NOTHING about this or if it works, but I just wanted to pass it along, since it does not involve pharmaceuticals. https://www.quellrelief.com/
The Quell is a TENS device,and an expensive one.What wonders me is,that they don’t mention the fact that it is a TENS unit,or might it be because you can find good decvices for way less money? Take a look here for an impression of what a reasonably good unit costs:
https://www.tensunits.com/category/tens.html
TENS might indeed be something,worth trying.
Like I said, I know nothing about it, and just wanted to throw it out there for anyone who cares to investigate
Melissa. Glad you are doing somewhat better!! That is a good thing!! I think you will recover and heal back to your pre antibiotic days in more time!! Try to ham in there and think positive!! You will get there!! I have taken 5-6 homeopathic remedies everyday since being floxed 19 months ago. I have not experienced getting worse from them and then better except for my worsening flox symptoms over the first few months of being floxed. So I would think you should improve rather then get worse since you have mostly recovered??? Keep the faith and stay the course in your healing!! You will see better days again!!
Thanks Dee! Your experience helps. I don’t know what is normal and what is not with this floxing business. This is my second floxing and in some ways it is very different than the first. Ugh. Yes to better days ahead!
I hope this helps someone. I was discussing CIPRO with someone a while ago and she said she had many symptoms that may be due to CIPRO. She had no idea she had been on CIPRO, but she did recall having multiple urinary infections that were treated with antibiotics. To make a long story short, after reviewing her medical records, she was given CIPRO multiple times. After reviewing her records, she noticed that each time she received CIPRO she developed depression, anxiety, joint pains, etc. Of course, no one knew what was wrong with her, so she was given all kinds of diagnosis. Eventually, she ended seeing a Rheumatologist who diagnosed her pains to be due to Lupus—no lab tests indicated Lupus.
Nonetheless, by the time I saw her, she was back to “normal”. I asked her what helped her. She said the Rheumatologist put her on 2 weeks of Steroids and her symptoms improved during the treatment. As soon as the steroids were stopped, the symptoms recurred. So, she was put back on the steroids for the next six months, divided daily doses. And I quote her, she noticed “very significant decrease in symptoms”. Because of the daily steroids, she was placed on Rituxan for nine months and noticed “major (she underlined the major) improvement and then the steroid was tapered off”. Now, she is off of steroids and Rituxan and she believes she is back to her normal health.
Do you know anyone who was mistakenly or even intentionally treated with steroids and a medication like Rituxan? I am searching to see if immunosuppression may be a short-term solution.
I think she is very lucky because steroids are incredibly risky. I would avoid ALL steroids forever.
Totally believe this, because I think Fleuroquinolones cause auto- immune disorders. People in this forum swear steroids cause more damage to those floxed, and because of that I will be cautious to take them. However, my Ophthalmologist also confirmed my reaction was due to inflammation from an auto-immune response to Cipro.