"Aug. 27, 2013 -- The FDA is strengthening its warning that a popular class of antibiotics, called fluoroquinolones, may cause sudden, serious, and potentially permanent nerve damage called peripheral neuropathy...."
I'm currently experiencing tendon swelling, peripheral neuropathy and double vision since taking levaquin in early September. I hope it's not permanent. Lot's of pain going on.
I just wanted to post the information I've gathered so others can make an informed decision if they want to take these drugs.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Avelox did a number on my achilles tendons. This was almost ten years ago, and while they did not rupture, they never healed.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
I think Cipro is the one that started me off.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Cipro is the ONLY thing that has helped my chronic UTIs. I SO wish there were other alternatives.
I have tried EVERY cranberry supp. One of them helped for years, but apparently has worn off.
I am now taking Seagate OLE in hopes to treat/prevent UTIs.
I think the OLE is useful. But I think I will ultimately need to once again take the cipro to tame a UTI that will eventually turn into a kidney infection unless I take an oral abx.
Been there, done that, way too many times. When it comes to taking the cipro vs. not, my options are limited.
Taking the oral cipro is much more acceptable than ending up in the hospital with a full-blown kidney infection.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
posted
I was taking fluoroquinolones and always took a little break after being on it for 3 weeks, alternating with another type of antibiotic for bartonella.
Also took a lot of magnesium and never had any tendon pain , or any other issues.
Posts: 238 | From Where | Registered: Aug 2012
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Need Vitamin C in high doses if have damaged tendons.
Need Vitamin B12 and other B Complex vitamins to heal nerve damage.
It is only considered "permanent" because regular medical science does not recognize healing can occur using non-pharmaceutical substances and/or without surgery.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
The people who haven't had a bad reaction are lucky.
The reactions are delayed and can happen 6 months or even a year after taking the med.
I saw one estimate that 1 in 100 to 1 in 250 are effected adversely from fluoroquinolones.
These are chemo meds.
Don't mistake a bad reaction for a herx. This stuff is a time bomb.
I've spoken to so many people who have had issues with these meds and healthy lifestyle made NO difference.
I took high doses of magnesium before taking it and it made no difference. I take a ton of supplements and support for Lyme already.
I even read the tedonitis solution BEFORE taking it and was doing the stuff on there because it was so similar to Lyme treatment. I and wanted to make sure this bad stuff wouldn't happen.
My body keeps having more and more reactions to this stuff. I'm 6 weeks out from my last dose and I dread what's next.
I was reading about D-mannose for UTIs.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Can regenerate mitochondria with PQQ.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Beaches-im sorry thrre is no alternatuve but you do have to tke it
Kidney infection can be life threatening
I have had llmds tell me more than once to take a short course of steroids for bells or asthma or colitis if it is bad
And we all know steroids are bad for us
I hope you are prepared to take the supplements that help protect you
There are whole mitichondrial protocols...i had to use these after being poisoned by statins to a point where i couldnt walk
Take csre of yourself...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Judie,
Thanks so much for all the excellent detail here. Such an important matter. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
beaches .. I was getting UTI's very frequently and about 6-7 yrs ago I began taking D-Mannose twice a day. Not a single infection since then.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
D-Mannose was the first thing I tried. Had no effect whatsoever in preventing UTIs/kidney infections.
I have a very long history of UTIs/kidney infections. I went into full blown sepsis once, because my ONLY symptom was a high fever! Almost went septic again due to that being the only sx, but by that point we knew it was likely due to kidney infection. I've been hospitalized about 25 times for them (yes, you read that right!), and the ONLY sx was the fever. It's VERY frightening.
Last few years, thankfully, I get the actual UTI sx. Unpleasant, but waaay better than just showing up in the ER with a fever of 102+ and rising.
This supplement IMO helped prevent those kidney infections:
It's a great supplement, but lately it hasn't helped prevent the UTIs, hence the need for the cipro.
I know all about the tendon damage from this class of drugs. When I had sepsis from the first kidney infection, I was on IV levaquin for 10 days or so.
My Achilles tendon was so sore I could barely walk. I know the tendon damage/pain can come months or years later.
Bactrim used to work, but the last time I took it, my entire body itched all over, which I think was an allergic reaction.
So now I am faced with trying to prevent/treat these infections with the only oral abx I can take that covers the e. coli/klebsiella organisms.
The OLE extract is helping to keep it at bay, but I do think that within the next few days I will have to start the cipro.
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Kayak, thanks! I know...I will have to do what I have to do.
As for the steroids, I don't sweat that. DD was a very bad asthmatic. She needed to breathe. I need them for another medical situation. End of story. It is what it is.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Gosh, the decisions we have to make are so tough.
There's always a decision between risks and benefits.
I didn't have enough information to make an informed decision before taking levaquin.
That's what's upsetting. I was never told some of the important risks (like the permanent nerve damage or tendonitis being incredibly common, not rare, or that the symptoms come on so incredibly fast).
If a situation is life threatening, I can understand wanting to take a risky drug.
I read one story where it took a woman 4 years to recover from a fluoroquinolone. She then got cellulitis and it was take a fluoroquinolone are die.
She took the med and had to go through recovering again.
It sounds like not all the damage is repairable though once a line is crossed.
We've go to do what we have to do....
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
More info:
Thread: fluoroquinolones cause secondary gene mutation amplifying resistance
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
wow! terrible! as if we don't have enough to worry about!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
To make it even more confusing, a lot of fluoroquinolone toxicity symptoms are the same as Lyme symptoms.
So many people with bad symptoms from fluoroquinolones were tested for Lyme and were told they were negative (who knows if that's accurate either).
Since you can have delayed reactions to fluoroquinolones for years I'm now faced with when I have a flare up asking, "Is this from Lyme or is this from levaquin???"
I won't know whether I need antibiotics or something else.
This is the conundrum that's going to plague me now.
I had to stop all meds last week. For some reason the antibiotics were interfering with healing my tendons and nerves. Those are more disabling than infection symptoms right now (or so it seems). So much pain and swelling, especially at my joints. Ugh...
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Levaquin and cipro gave me nerve damage - terrible burning sensations all over my body.
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
posted
What about factive?? Same thing? Cherylsue was your damage permanent?
I have to think of other alternatives for bart. Rifampin didn't do the job even after 2yrs and when I tried septra I got these weird thing on the bottom of my feet and finger tips. They hurt to the touch and couldn't figure out if it was killing the RMSF or a drug reaction.
What do we do? Cant take biasing either...to many heart issues on that.
Posts: 908 | From Albany | Registered: Nov 2008
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
There are herbal protocols for Bart.
Buhner, Byron White, etc.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I have to think of other alternatives for bart. "
I was faced with this decision too. I'm allergic to all the drugs for it.
I don't think the fluoroquinolones actually completely get rid of bart:
I can't do Byron White. He uses ingredients I'm allergic to.
I do okay with Researched Nutritionals - BLt.
At least the infections aren't spreading like wildfire right now. I'm just looking for containment while I heal from the "adverse drug reaction" from levaquin.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
lymeboy
Unregistered
posted
I know these are risky drugs but avelox knocked my Bart back in a big way. I don't think quin. drugs eradicate Bart completely though.
IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I don't think quin. drugs eradicate Bart completely though."
They don't. There was just a post with studies saying bart builds resistance.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
This is timely:
Experts: Top antibiotic carries hidden side effects not listed on the label (posted November 3, 2014 on ABC)
"Bennett said thousands of people have reported psychiatric side effects to the FDA. He also pointed to a 2013 FDA review of six different fluoroquinoles, including Levaquin, that raised the possibility of mitochondrial toxicity."
posted
Can this warning be put at the top of the discussion section permanently....that way those who do take it will have all of the information prior to doing so.
It is that important. I am seeing to many people damaged by these chemicals on this forum. Sad, when there are other options.
Hope this gets taken seriously.
Posts: 172 | From ohio | Registered: Feb 2010
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm in a support group for people with chronic illness. The members have random, awful symptoms. Many the doctors can't figure out.
I made an announcement about what happened to me with levaquin, warning people not to take these drugs.
It turns out at least 2 others were damaged by cipro and levaquin.
One was taking steroids with cipro at the same time and has been seriously ill for quite awhile.
The other is the one I mentioned in the other thread who committed suicide a couple months after my announcement. She couldn't take the pain and vertigo that cipro caused her to have anymore.
This is after making my Lyme announcement two years ago. I urged people to get tested. Two people came back positive for Lyme (not the cipro people) and are now in treatment.
So many are walking around damaged by Lyme and/or fluoroquinolones and don't know it.
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Judie, I am SO sorry to hear about your friend.
Quite literally, Cipro is the ONLY oral abx I can take for chronic UTIs b/c of allergies to numerous other abx, as well as the type of gram neg bacteria found in my uriine cultures.
When my UTIs decide to go upward I am hospitalized and my IV abx options are somewhat expanded.
I am fully aware of the dangers of this class of drugs. I am also acutely aware that this class of drugs has kept me out of the hospital numerous times.
As with everything else, buyer beware.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
List of different generations of quinolones.
posted
I have Lyme & have had an IV 2.5 years I had a bad bladder infection. Ciprofloxacin was the only PO drug to that would cure my infection, all the others were heavy duty IV drugs. It affected all my ligaments & tendons. When I asked my LLMD she said stick it out for a month.
I knew the infection was bad I saw the results & why my internist would not touch it. I walked with 2 canes & sometimes crawled. I would forget and fall flat on my face a few times. Best I can say 1 month is better than the usual 2 weeks. You will be done!
I had chronic bladder infections in the past. You will never rid yourself from them if you do only 10-14 days if it's stubborn it will return in a couple of months! The pain is bad, but it can lead to horrible kidney issues. Laying down the pain was not as bad.
It took about a month for the pain especially in the achillis tendon to go down. Use heat,ice, topicals along the way along with your usual pain meds! Everytime I get a UTI I pray for it to be clean more than the other tests.
-------------------- Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro. Posts: 51 | From Chicago | Registered: Jun 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Use heat,ice, topicals along the way along with your usual pain meds! "
Unfortunately that's not enough for the degree of damage these drugs cause if you are floxed.
There was even a class action lawsuit for PERMANENT tendon damage from these drugs.
People who are floxed usually wind up not being able to process medications like ibuprofen because their metabolism has been messed up.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
All I know is that Cipro is the drug of choice for me. I wish it wasn't but it is. And I am grateful that there is SOMETHING that keeps me out of the hospital.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I started this thread to warn others about the risks. I'd like to stay on topic.
More articles about fluoroquinolones causing damage:
The Poisoning of America: The Rise of 'Mystery' Illnesses Including Chronic Fatigue Syndrome, Fibromyalgia, and Gulf War Syndrome
During the 1990-91 Persian Gulf War, then-Navy corpsman David Ridenhour often browbeat troops in 1st Battalion, 5th Marines to take their medications — the anti-nerve agent pyridostigmine bromide and another pill, new to the market, to prevent anthrax.
Ridenhour took them. And while he doesn’t completely blame his Gulf War illness symptoms on the drugs, he was interested to learn that last summer the Food and Drug Administration toughened its warnings for Ciprofloxacin,or Cipro, saying the potent antibiotic can cause severe and sometimes permanent nerve damage.
Ridenhour has that damage, known as peripheral neuropathy, which manifests as tingling and numbness in his limbs.
“They told us to start taking the Cipro, and I didn’t know what it was for,” he said. “But I clearly remember being told it was to prevent anthrax. Until then, as far as I knew, anthrax was a sheep disease.”
It’s been well documented that the Defense Department stockpiled 30 million doses of Cipro during the Gulf War, and 150,000 troops received anthrax vaccines to prevent infection. But less well known is that during Operation Desert Shield and Desert Storm, some troops actually took Cipro in anticipation of an anthrax attack.
According to Marine Corps documents, members of I Marine Expeditionary Force near Jubayl, Shaikh Isa and Bahrain International Airport and elsewhere took Cipro for a week or more as a prophylactic — although it was not approved to prevent or treat anthrax.
That approval from the FDA wouldn’t come for nine more years.
“What gives me nightmares at night is that I feel like I helped poison the guys in my unit,” Ridenhour said in a recent interview with Military Times.
Powerful antibiotics: Cipro and other fluoroquinolones — including Levaquin, Avelox and other medications with “flox” in their names — are powerful antimicrobials used to treat serious bacterial infections.
But along with potency comes a litany of precautions, warnings and side effects — information that service members and their families should consider when they are prescribed these medications, or when they request them to treat routine infections.
In 2008, the FDA added a boxed warning — its most serious alert — to fluoroquinolones, noting they can cause tendonitis and tendon rupture. In 2011, the agency added a second boxed warning, saying the medications can worsen the symptoms of myasthenia gravis.
And while the most recent warning for peripheral neuropathy is not the most severe alert, it is alarming.
According to the FDA, nerve damage “may occur soon after these drugs are taken and may become permanent,” and is unrelated to dosage levels. The warning applies to oral medications as well as those delivered by injection.
“The onset of peripheral neuropathy after starting fluoroquinolone therapy was rapid, often within a few days. In some patients, the symptoms had been ongoing for more than a year despite discontinuation of the fluoroquinolone,” according to the FDA.
In 2011, 23 million patients received prescriptions in the U.S. for Cipro and other fluoroquinolones, including 294,069 prescriptions dispensed at Defense Department facilities. From 2009 to 2012, a total of 1.2 million prescriptions for fluoroquinolones were distributed at military treatment facilities.
'Guinea pigs': Cipro has a long history of use in the U.S. military, dating to at least 1989 when it was tested on soldiers in Egypt for travelers’ diarrhea.
It was again widely used in the Persian Gulf War, although the number of those who actually took it is not well documented. Former troops who wrote Military Times said they took white pills that they later figured out were Cipro when the drug became more widely recognized and distributed.
“I’m one of those Marine combat veteran guinea pigs who took those pills,” one former service member wrote. “I’m 100 percent service-connected [VA disability] because of the toxic soup we were exposed to and those damn pills.”
Biological warfare experts and retired Marine Gen. Walter Boomer, who led I MEF during the Gulf War, said precautions were taken because the threat of an anthrax attack was legitimate.
By September 1990, Iraq had achieved industrial-scale production of anthrax, had stockpiled 30 tons of the medium needed to grow more and had shown no reservations about launching chemical attacks on its own people.
“We viewed [anthrax] with as much seriousness as their potential to use chemical weapons; ... I was presented by [U.S. Central Command] with these options that if we were attacked it would prevent an outbreak, so with that information, it was a fairly simple decision,” Boomer said.
Scientists have spent years trying to determine what may have caused 250,000 Gulf War veterans to develop multiple and often debilitating symptoms after the war.
Because symptoms are varied and troops were exposed to a variety of environmental hazards, from oil well fires, pesticides, vaccinations, medications and possibly nerve agents, researchers say it will be difficult to pinpoint a cause. But Ridenhour thinks the recent FDA warning may explain some of his symptoms. “It clearly says ‘peripheral neuropathy,’ and that’s what I have,” he said.
In 2000, the FDA approved Cipro to prevent inhalation anthrax after possible exposure, the first antibiotic approved as a treatment in the event of a biowarfare attack.
During the 2001 anthrax attacks, thousands of workers at the U.S. Postal Service, the White House, the U.S. Capitol and elsewhere took Cipro. The Department of Health and Human Services requested enough to provide 12 million people with doses for 60 days.
While Cipro and other fluoroquinolones are widely prescribed, their use has leveled off since 2002. Within DoD, prescriptions for fluoroquinolones actually are waning, down 14 percent since 2009, according to Pentagon data
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
This internal FDA memo recognizes that a patient who had successfully taken fluoroquinolones before passed his "fluoroquinolone tolerance threshhold" with the first pill of a second round of Levaquin:
On page 9. He was put in ICU and died two weeks later. Scary stuff.
Posts: 748 | From Texas | Registered: Feb 2015
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
quote:Originally posted by SickSam: This internal FDA memo recognizes that a patient who had successfully taken fluoroquinolones before passed his "fluoroquinolone tolerance threshhold" with the first pill of a second round of Levaquin:
On page 9. He was put in ICU and died two weeks later. Scary stuff.
That pretty much sums it up. Fluoroquinolones are a time bomb. The drugs works by causing cell death (in both the host and infection).
Once you cross a certain point (even just one pill can do it), you can't come back.
I would like to copy and paste the text on page 9, but can't for some reason. I hope other will read it. Lots of important information there.
On page 10 it mentions one of the possible predisposing factors is Lyme disease.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I think the issue is that doctors don't do a good enough job warning people about the risks of these drugs, AND monitoring them once they are on it. And I think this is true with all drugs, not just flouroquinolines.
Too many doctors prescribe drugs too casually without even knowing all the side effects themselves!
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
quote:Originally posted by dali: Can this warning be put at the top of the discussion section permanently....that way those who do take it will have all of the information prior to doing so.
It is that important. I am seeing to many people damaged by these chemicals on this forum. Sad, when there are other options.
Hope this gets taken seriously.
I agree. Here's another article:
FDA Allows Chemo Drugs To Be Prescribed As Antibiotics
posted
Thank you for taking my suggestion into account. I hope this helps others make an informed decision.
Posts: 172 | From ohio | Registered: Feb 2010
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Eye issues associated with fluoroquinolones:
posted
I wish I had seen this information BEFORE the damage was done.
While being alerted to the issues with Levequin and electing not to try it as I had more than enough nerve and tendon problems, I was not made aware of Cipro being the same type of drug until after the fact.
Now I can only hope the exponentially increased tendon pain, neuropathy, vision issues and disassociation among many other changes will eventually resolve themselves.
I will say Cipro did help my Bart symptoms quite a bit while taking it but it seems I traded one set of issues for another.
Please be careful with this stuff, it is no joke!
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
quote:Originally posted by average joe: I wish I had seen this information BEFORE the damage was done....
...I will say Cipro did help my Bart symptoms quite a bit while taking it but it seems I traded one set of issues for another.
Please be careful with this stuff, it is no joke!
I totally agree. I'm sorry you weren't alerted to the dangers and I'm very glad this thread was pinned.
I saw a news report a week after I was floxed. I know it's frustrated.
I hope we can all heal from the damage and inform others of the adverse reactions BEFORE they take these meds.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
So i developed nerve pain in my head on the left side as a sudden event right after a big pulse of abx in December. It was triggered by a high pitch noise and has led to hyperacusis and severe pain.Dr. J has been useless during this whole thing. I am honestly scared that one of the multiple abx he had me taking caused this as an AE.
I was pulsing Mepron, Mino, Omnicef and Flagyl when it happened.
It was just so sudden in my head, in response to a loud noise and now i seem to have permanent hyperacusis and severe pain that gets worse and worse. I can barely touch head or face and feel like its triggering central pain.The neurosurgeon said I have occipital, temporal and possibly trigemianl neuralgia but MRI doesn't show a cause for sxs.. big surprise...
I am scheduled with Dr.C but am honestly feeling terrified of antibiotics even as bad as other symptoms are getting...My head pain is unbearable daily.
Dr. W has rxed Rifampin, zithromax and planquinil...He thinks I should have a steroid injection even with the risk it is so bad. So scheduled with pain management per the neurosurgeon.
Im in PT, seen craniosacral dr, dentist for teeth and guard for grinding, ND who did some detox and light therapy (the frequency was picked up by the nerve in my head) I think it made it worse. I had lymph massage which also irritated head as it can barely be touched..Im taking triliptal but doesn't do much.
I am baffled and honestly terrified at my turn for the worse. I am stuck not sure what to do to help myself and everyone is just guessing at what has happened )-:
Posts: 97 | From Rockwall,TX | Registered: Apr 2014
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
'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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic