Topic: 2013 FDA Warning about Fluoroquinolone antibiotics causing PERMANENT damage
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
mamalicious - I'm sorry you're in so much pain.
My body lacks the gene to process rifampin and zithromax (I get horribly ill if I take those).
Plaquenil is a quinolone. I got refloxed when I took a quinolone (it doesn't need to be a fluoroquinolone, the quinolones are also an issue).
Can you get a third, fourth or fifth opinion?
There's a couple alternative docs in Texas who know something about Lyme. I don't know how close they are to you.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Judie- Can you PM me the names? I am in the Dallas area but am pretty desperate...
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
OK Able to read some of the posts. I was told I had a bacteria infection when the FNP did a urine test for diabetes.
So took 2 cipro. One yesterday and one this am. Do not want to take a 3rd.
So what do we take.
I have had increased back pain which I read maybe from urinary track infection plus increased over all pain which I thought was due to being back in the apartment vs being at the hotel...but not so sure now.
I have zithro from last the first time I visited the FNP. I had that dry cough thing that I have had for years when the body is running on empty.
She thought I had walking pneumonia or something so prescribed the zithro which I purchased but did not take.
I have had cabteria in my urine off and on since college. Back then I would not get the abx tha twas prescribed as they made me worse.
I would go back for the check up visit and get a clean urine test...so did not put much improtance on the bacteria in the urine thing...unless it hurtt to pee ..then yes..took the abx.
I always got the UTI and it hurt to pee after I had sex with husband. Got where i did not want ot have sex with him nor did I end up even liking him.
So wondering if that along with ohter symptoms that came and went were because he had lyme disease and was passing it on to me??
So much more needs to be studied with this condition.
Docs at the time said I had depression but the anti depresive meds made me depressed.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I can not get any of these to pull up on my computer. I wanted to print out the info on one of them and drop it off at FNP's office.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Levaquin IV fried my brain and gave me burning sensations all over my body. It took me over a year to recover.
Posts: 1954 | From Illinois | Registered: Aug 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Boy, that Ch 8 website really screwed up my 'pooter! Way too much downloading. Here's the article text, for those w/ older devices: ----------------- 8News Investigates: Could this antibiotic permanently damage your health? (By WRIC Newsroom Published: April 21, 2015)
RICHMOND, Va. (WRIC) – Cipro is a popular and powerful prescription drug that may be in your medicine cabinet right now. But are there hidden side effects that you won’t find on the label?
“I was two weeks into taking Cipro and I lost the ability to talk,” said Richmond Furman, who has never been the same since being prescribed Cipro in 1999.
Cipro, part of a family of drugs called Fluorouquinolones, is powerful enough to treat anthrax and is widely prescribed for everything from ear infections to sinus infections.
Over the years, Furman was prescribed the drug multiple times for everything from a urinary tract infection to an ear infection. And while the infections cleared, he noticed those unusual symptoms intensify with each dose.
“I suffered ringing in the ears, vertigo, sharp stabbing pains, numbness in limbs,” Furman said. “I suffered panic attacks so severe I couldn’t sit down.”
It wasn;t until Furman began to research the drug online that he found there were others like him.
8News obtained an internal FDA memo that shows while more research is needed, the drug could be linked to mitochondrial toxicity. In other words, damage to one’s cells.
The memo goes on to say mitochondrial toxicity could be associated with neurodegenerative diseases like Parkinson’s and Alzheimer’s.
“There are still safe and effective drugs, even though they need to be taken with caution,” said Craig Parrish, the Virginia Department of Health’s Pharmacy Director.
Parrish added that these drugs have prevented a lot of hospitalizations, and side effects are rare.
And Bayer, the maker of Cipro, tells us, “patient safety is our top priority. We take all reports of adverse events seriously, and they are reported to the U.S. FDA as required.”
Still, Furman now refuses to take Cipro or any other Fluorouquinolone.
Instead, he takes a sort of cocktail of vitamins and anti-oxidants to counteract what he believes have been the damaging effects of the drug.
Cipro is not the only antibiotic in the family of drugs raising a red flag.
These drugs already come with a warning about tendon ruptures and nerve damage. But there is now a push for serious warnings.
You can watch Part I and Part II of Kerri O’Brien’s investigation at the top of this post. ------------------ I was *gonna* take Levofloxacin (sic?) for what ah Bleeved was a lingering "BLO" infection. Now I'm thinking more along the lines of going on an extended detox regiment! -M
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I did the tests and they turned out normal, but you never know, something might come up for you.
Posts: 2839 | From California | Registered: Jul 2012
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Important info about how to list these drugs on your allergy/sensitivity chart.
"When I told my doctors at Kaiser Permanente that I wanted fluoroquinolones to be put in my chart as a drug allergy, they couldn’t do it, because “fluoroquinolones” are a class of drugs, and they could only enter individual drugs into their system.
In order to get all fluoroquinolones in my chart, I had to list every fluoroquinolone separately, because if I just said that I was allergic to Cipro, they would still give me Levaquin, or Avelox or Floxin.
That’s a bit ridiculous seeing as it says ON THE WARNING LABEL that if someone has a history of hyper-sensitivity to one quinolone, they should avoid exposure to other quinolones."
"An FDA panel has found the benefits do not always outweigh the risks when it comes to some commonly prescribed antibiotics."
Posts: 2839 | From California | Registered: Jul 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
FDA Committee recommends label changes, warnings for popular antibiotics like Cipro, Levaquin
"Fluoroquinolones (FQ) are powerful broad-spectrum antibiotics whose side effects include renal damage and, strangely, tendinopathies. The pathological mechanisms underlying these toxicities are poorly understood...."
Posts: 2839 | From California | Registered: Jul 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
More info on levaquin not curing bartonella, it just causes resistance:
FDA Drug Safety Communication: FDA advises restricting fluoroquinolone antibiotic use for certain uncomplicated infections; warns about disabling side effects that can occur together
"Some signs and symptoms of serious side effects include tendon, joint and muscle pain, a “pins and needles” tingling or pricking sensation, confusion, and hallucinations."
Posts: 2839 | From California | Registered: Jul 2012
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posted
Just finished watching program on medical cannabis. They are using it to treat fluoroquinolone damage, or maybe they said they're treating the pain from it? Not sure which. It's in the Sacred Plant program series.
Posts: 13171 | From San Francisco | Registered: May 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Nature came out with a new article just this last week, "When Antibiotics Turn Toxic." (Nature, vol. 555, pg. 431-433, 3/22/2018) by Jo Marchant.
It discusses primarily the quinolone family of antibiotics (Ciprofloxacin and Levaquine, the two best known) and a new syndrome of potentially permanent symptoms recently recognized (in 2016) by the FDA called "fluoroquinolone-associated disability (FQAD).
FQAD sounds kinda' scary and it is. That's why it's wise to be aware of it because quinolones are used whenever other ordinary antibiotics have failed, as well as for primarily life-threatening situations.
The FDA also noted a disturbing pattern: fluoroquinolones had a much higher percentage of disabilities among their serious adverse event reports than did other antibiotics.
Accumulating evidence suggests that fluoroquinolones are damaging mitochondria, the power packs inside human cells that evolved from symbiotic, bacteria-like cells billions of years ago.
This kind of harm can affect every cell in the body, explaining why a wide range of symptoms can appear and get worse over time.
Because mitochondria retain some similarities to their bacterial ancestors, antibiotics can pose a particular threat to them.
Isolated studies from the 1980s on wards have suggested that fluoroquinolones impair mitochondrial function, but a 2013 study by Collins, et al is the most convincing.
They reported that antibiotics in several classes triggered oxidative stress -- a build-up of reactive, oxygen-containing molecules -- in mitochondria, inhibiting their function across a range of mammalian cells.
"We were surprised at how strong the effect was and how common the effect was across different classes," Collins says. But "the largest effects were seen in the quinolones."
At a conference last September, Bennett reported preliminary data that might hint at why only some people develop serious side effects from fluoroquinolones.
He took saliva samples from 24 people who reported neuropsychiatric side effects -- such as memory loss, panic attacks and depression -- and found that 13 of them (57%) shared a gene variant usualy seen in only 9% of the population.
Bennett is not revealing the gene's identity because he has a patent application in process, but he says that it seems to be a site related to poor metabolism of the quinolones.
Such a mutation might allow dangerously high levels of the drug to accumulate in cells, including in the brain. Bennett is now conducting a trial with 100 more participants to see if he can replicate the result.
If so, that might lead to a genetic test to identify people who should not be given these drugs.
He and Murphy have also found, in lab studies, that giving antioxidants alongside fluoroquinolones seems to mitigate the effects on the mitochondria. But such trials are difficult and expensive, particularly for drugs that are given in sometimes life-threatening situations.
Golomb is currently conducting an unfunded on-line survey to gather information on the experiences of thousands of patients..She hopes that it will lead to hypotheses about what might mitigate harms that could be tested in clinical trials.
But little support is available. That's typical for research on drug safety. ''Investigating medications that have been on the market for years isn't a priority for research agencies such as the NIH," says Bennett.
Manufacturers don't have an incentive to fund post-market safety studies, particularly for off-patent drugs such as cipro and levofloxacin, where the vast majority of sales are from generic firms.
Another factor is scientists' reluctance to publish results that drug companies might find unfavorable. "There's a long history of adverse action against people who expose drug and chemical harms," says Golomb.
Note: I've extracted excerpts from this article, mostly verbatim, since Nature is not sold on news stands, but is a very expensive academic subscription journal, found primarily in university libraries.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Someone I know just got terribly injured from taking a fluoroquinolone - she got stem cell injections recently to attempt to repair the body damage. Will post an update when I hear how it's going.
Posts: 13171 | From San Francisco | Registered: May 2006
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Wow, this is so depressing and scary.
Fluroquinolones are the only class of ABX that I am not allergic to now. I thought I'd never had a single sx from them, but....
I was dx'd with Vit. B6 toxicity neuropathy and told it would go away in a year, about 6 yrs. ago. It went slowly down in degree, and it's good it did, or I would have taken my life it was so awful.
The heat and numbness is permanent in my toes though, and sometimes flares up for no apparent reason all over with burning skin and chills to the bone. My temp drops below hypothermia and I need an electric blanket in very hot weather, but with my feet sticking out bare.
I was told never to take any B6 supplement again and as a result can't take the B Complex that really helped my depression.
Now I wonder if it was the Cipro I took long before that caused it and just a coincidence it happened when I raised my B6 from 50 mgs. a day to 200 mgs. daily, thinking I probably had Pyroluria.
Metronizadole cures me, and I mean it takes away every sx I have for as long as I am on it. They won't give it to me since they say it destroys the liver, not to mention gut bacteria. I do not think of it as an ABX though, but as an antifungual.
I appear to be screwed. Big hug to all of you who have suffered from this problem.
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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