ABC affiliate KSTP Minneapolis aired news story.
Friday, February 27, 2015
Wednesday, February 25, 2015
QVF partners with Bravelets
Tuesday, February 24, 2015
Wednesday, February 18, 2015
CBS3 Philadelphia news story
Thank you Stephanie Stahl and CBS3 Philadephia for airing this news story about fluoroquinolones.
It can also be viewed here
Media Opportunities and Inquiries
*Note: Check back often. This list will
frequently change.
Quinolone Vigilance Foundation is
frequently asked by reporters to find floxies who are willing to be
interviewed. Since November 2014 there have been a steady stream of
news broadcasts, and we could not be more pleased by the amount of
attention that Fluoroquinolone Toxicity. Finally, we have a voice and
we are able to reach millions of people so that patients are aware of
the dangers and can make an informed decision about their well-being.
If you are interested in being
interviewed, please contact Executive Director Rachel Brummert at
rachel@saferpills.org.
Please provide an e-mail address and phone number and Ms. Brummert
will pass along your contact information to the appropriate
person(s).
Quinolone Vigilance Foundation is available for media interviews and/or will provide an official statement which can be used for a print or television story.
Information for the press is located here.
Current interview opportunities:
Tampa, Florida
Pittsburgh, Pennsylvania
Eastern Iowa (Cedar rapids, Cedar
falls, Waterloo, Iowa City )
Tulsa, Oklahoma
Jacksonville, Florida
For a list of completed news stories click here.
Monday, February 16, 2015
Fluoroquinolones and Neurodegenerative Disease
In 2014, through a Freedom of
Information request, an FDA Pharmacovigilance Review document was
made public. The review, dated April 17, 2013, and signed by an FDA
Division Director, clearly links the use of fluoroquinolone
antibiotics to neurodegenerative disorders.
It hit me hard when I saw the report,
yet it confirmed what my neurologist had been saying all along.
I took Levaquin in 2006 for a suspected
sinus infection. Four years later, after suffering through 3 years of
frightening neurological symptoms, I was diagnosed with the
progressive form of a neurodegenerative disorder called
Neurosarcoidosis.
Neurodegenerative disease describes the
progressive loss of structure or function of neurons including death
of neurons. Neurons don't typically reproduce or
replace themselves so when they become damaged, or they die, they
can't be replaced.
Being diagnosed with Neurosarcoidosis was a frustrating journey because it mimics other diseases. It is only when other diseases are ruled out and invasive tests are performed that it is diagnosed.
At Princeton Medical Center, I underwent a lumbar puncture. The spinal headache following the procedure lasted for 5 days. When the results came back, I sat in the neurologist's office trying to process it. They found elevated protein levels and elevated lymphocytes. A brain MRI found space-taking lesions. A biopsy of brain tissue showed granulomas- the tell-tale indication of Neurosarcoidosis. Brain biopsies are risky and most doctors don't like to do them. However, it is the only way to definitively diagnose it.
Typically, our bodies fight perceived threats by mounting an inflammatory response. With Neurosarcoidosis, this response becomes excessive and ends up producing small clumps of cells that can cluster together in the brain, or any organ in your body.
When these clusters become large enough, they can begin to interfere with the functioning of your organs. The inflammation causes irreversible scarring in the affected organ.
Two- thirds of Neurosarcoidosis cases go into remission within a decade of diagnosis. The other 1/3 of cases fall into the category that I am in: the unrelenting, progressive form of this illness that leads to organ impairment.
Granulomas in the brain cause seizures, chronic meningitis, memory and motor impairment, and many other debilitating symptoms. It is extremely hard to treat.
I take medications to try to slow the progression. But a time will come when my memory and cognitive function will decline, as will my motor function and I will no longer be able to take care of myself. I am 44 years old, still relatively young, yet my symptoms often make me feel much older.
I frequently lose my balance. In fact, I lost my balance this afternoon, fell into a lamp, and shattered the light bulb. My vision is getting increasingly worse, and I have short term and long term memory loss. I am noticing differences in my speech and I often switch words mid-sentence. My spatial orientation has become more severe as has the anomic aphasia (problems recalling words, names, and numbers) and I have to compensate by getting to the word, name, or number in a round-about manner. Luckily, I have people around me who know what I am trying to say and they'll give me clues so I can arrive there on my own. It is when I am on a conference call or in a meeting with people I don't know that I struggle the most.
Had I known in 2006 that an antibiotic could lead to a neurodegenerative disease, I would have never taken it.
My hope is that the Citizens Petition submitted by Dr. Charles Bennett to the FDA leads to stronger warnings to include Mitochondrial Toxicity. Losing control over your mind and body is not something I would ever wish on anyone.
For more information, please visit http://www.saferpills.org/citizen-petition/.
Rachel Brummert
President/Executive Director
Quinolone Vigilance Foundation
www.SaferPills.org
Rachel@saferpills.org
Saturday, February 14, 2015
Tuesday, February 10, 2015
Fluoroquinolone Toxicity radio show
Quinolone Vigilance Foundation Assistant Director Donna Schutz was featured in a radio show about Fluoroquinolone Toxicity on February 9, 2015.
QVF Assistant Director Donna Schutz and Progressive Medical Center's Managing Director Dr. Gez Agolli
Sunday, February 8, 2015
QVF Fundraising Event
*DUE TO CIRCUMSTANCES BEYOND OUR CONTROL, THE BAND 'A DARK DESCENT' WILL NOT BE ABLE TO PLAY THIS FUNDRAISING EVENT. WE APOLOGIZE FOR ANY INCONVENIENCE.
*2/25/15- Goddess Crow has been added to the line-up.
On March 13, 2015 Quinolone VigilanceFoundation (QVF) is having a fundraising event in Stafford, Virginia.
Bands set up at 7PM. Benefit will start after 8PM.
This event is dedicated to the memories
of Bob Grozier and Chris Dannelly, who both tragically lost their
lives after taking the fluoroquinolone antibiotics Cipro and Levaquin
respectively, and will help Quinolone Vigilance Foundation continue
our work in research, advocacy, and education. For more information
about what we do, please visit us at www.SaferPills.org and on Health Cosmos.
Bob Grozier, 55, of Pennsylvania, died
on June 11, 2014, 12 years after taking Cipro. His death certificate
specifically notes his reaction to Cipro as a cause of death. Despite
Bob's immense suffering for 12 long years, Bob never stopped raising
awareness. QVF works closely with Bob's family so we can continue
Bob's mission.
Bob Grozier
Chris Dannelly of Duluth, Georgia,
husband and father of 2 took Levaquin. After 2 pills, Chris ended up
in the emergency room in extreme pain. Three days after taking
Levaquin, Chris died. His autopsy listed his death as a result of
taking it. Chris's wife Kathy is a QVF Ambassador for Duluth,
Georgia.
QVF Ambassador Kathy Dannelly, Jeff
Stephens, and QVF Assistant Director Donna Schutz were featured in a
news story on February 2 on WSB-TV:
http://www.wsbtv.com/videos/news/channel-2-investigates-complaints-about-popular/vDDZZS/
QVF Ambassador Kathy Dannelly (left); Jeff Stephens and QVF Assistant Director Donna Schutz (right)
Displayed at the event will be photos
of Bob and Chris, provided by their families, along with their
stories. We will also display QVF awareness materials and educate
the patrons about the dangers of fluoroquinolone antibiotics.
We are also displaying information about the death of Dick Decent of Def Leppard fame. In his own words he once wrote, " “I am too ill and in shock to post any more right now, but if you take anything away from this post, let it be an insistence on NOT TAKING ANY FLUOROQUINOLONE ANTIBIOTICS…. EVER… for ANY REASON.”
Dick Decent
Fluoroquinolone Toxicity does not discriminate.
We are also displaying information about the death of Dick Decent of Def Leppard fame. In his own words he once wrote, " “I am too ill and in shock to post any more right now, but if you take anything away from this post, let it be an insistence on NOT TAKING ANY FLUOROQUINOLONE ANTIBIOTICS…. EVER… for ANY REASON.”
Fluoroquinolone Toxicity does not discriminate.
Quinolone Vigilance Foundation wishes
to thank the following for making this event possible:
We look forward to a great show!
Saturday, February 7, 2015
Businesses That Support QVF
Quinolone Vigilance Foundation wishes to express our gratitude to the following businesses for supporting us and helping us raise awareness:
Agem Capital: http://www.agemcapital.com/social_responsibility.html
Progressive Medical Center
4646 North Shallowford Road
Atlanta, GA 30338
New Patients: 855-766-8228
Current Patients: 770-676-6000
Fax: 770-392-9805
www.progressivemedicalcenter.com
Baron & Budd Law Firm
3102 Oak Lawn
Suite 1100
Dallas, TX 75210
1-866-844-4556
www.baronandbudd.com
Hudak Chiropractic Wellness Center
909 Amboy Avenue
Edison, NJ 08837
732-661-0800
www.hudakchiro.com
Gallagher & Kennedy Law Firm
2575 East Camelback Road
Phoenix, Arizona, 85016
Telephone: 602-530-8000
http://www.gknet.com/
Quality Eye Care
Killeen, Texas
Sauganash Wellness Center
Chicago, Illinois
Statham Pharmacy
Statham, Georgia
First Citizen's Bank
Charlotte, NC
WRIC-TV
Richmond, Virginia
Friday, February 6, 2015
ABC2 Atlanta airs third news story about Levaquin
ABC affiliate WSB-TV Atlanta aired a third news story about Levaquin on February 5.
Since the original broadcast featuring QVF Duluth, Georgia Ambassador Kathy Dannelly and QVF Assistant Director Donna Schutz on February 2, we are told by reporter Jim Strickland that the stories have been shared on social media 4 million times.
Due to the overwhelming response to the original story, WSB-TV did a follow up story on February 3, which then led to the February 5 broadcast.
Quinolone Vigilance Foundation wishes to thank reporter Jim Strickland for his continued dedication to helping us spread the word, as well as everyone who shared and comment on the news stories.
Tuesday, February 3, 2015
Guest blog by Jenny Frank
“I Think She Fell Off A Cliff!”
Sometimes you can judge how you’re doing by the kinds of polite questions
good friends, respected coworkers, casual acquaintances, total strangers, and nine
year old students ask you.
“How were you injured?”, asked the polite medical technician as he wheeled
me in for an MRI. Actually, he only pushed the wheelchair to the door of the MRI
room. I had to hobble to the actual machine. Taking a metal wheelchair into a room
with a giant magnet would have made for an exciting ride, to be sure, but I had
already had enough excitement for the year, and 2011 had only just begun.
“Did you have knee surgery?”, asked the kind, but very out of shape, stranger
in the dressing room at the gym.
“Were you in a car accident?”,
“Are you Okay?”,
“Oh my God, what happened to you?!”
“I think she fell off a cliff,” one fourth grade student whispered loudly to the
kid standing next to him in line.
Clearly I had made an impression with my two knee braces, twin ankle braces,
and matching wrist braces, accessorized with a classic cane. If you’re dressed like
this you know for sure you are not doing well. It’s what we, here in Arizona, refer
to as the, “I tripped on the trail and fell into the Grand Canyon” fashion statement.
The worst part was trying to explain what had actually happened. I could tell that
each friend, acquaintance, and total stranger was waiting with baited breath for my
hair-raising tale of danger. I wanted to tell them that I had jumped into traffic to
save a cute kitten/puppy/toddler, that had strayed into rush hour traffic and was
facing certain death. I wished I could have regaled them with a glamorous story,
“You see, while I was skiing in the French Alps with my good friends, Brad and
Angie,…….” Instead, I was forced to endure their incredulous looks time and time
again when I told them the truth, “About a month ago, I took an antibiotic and I
sort of, ummm, had a bad reaction…….”
“ An antibiotic did this to you?!?
Yes, I guess you could say I fell off of Levaquin Mountain.
In December of 2010, I was prescribed Levaquin for a possible strep infection
that was never actually cultured. Levaquin is in a class of antibiotics called
fluoroquinolones, commonly prescribed for routine sinus infections, anthrax, and
the plague. That’s right, anthrax and the plague. Let’s pause for a moment and let
that sink in. High-powered medications that can leave your body with significant
collateral damage including spontaneous tendon ruptures, irreversible nerve
damage, and mitochondrial dysfunction. In fact, almost 50% of the antibiotics in
this class have been pulled off of the market over the years due to severe toxicities.
I was told none of this by the doctor who wrote the prescription, the nurse who
handed it to me, or the pharmacist who filled it. I was warned I might experience
“some dizziness”. In all fairness, that was an accurate statement. I did indeed
experience “some dizziness”. After eight pills, “some dizziness”, along with
difficulty breathing and severe joint pain, resulted in a late night visit to the ER in
an ambulance. I was diagnosed with a medication reaction, given some benadryl,
and sent home two hours later in the wee hours of the morning with the following
helpful advice, “Don’t ever take that again.” Duh!
I might have escaped with an expensive ride to the ER and a missed day of
work, except for the dirty little secret of fluoroquinolones. The characteristic that
makes it so difficult to diagnose a quinolone reaction, so difficult for patients to
connect the dots, so difficult for medical professionals to believe patients who have
been harmed by these drugs. The dirty little secret pharmaceutical reps won’t tell
your doctor. The big fat elephant sitting in the waiting room. Delayed Adverse
Reactions. Adverse reactions and effects that show up weeks or months or years
after you have stopped taking the antibiotic. Life-altering, disabling effects that
appear in your body long after the drug has left your bloodstream. Damage to your
body at a cellular level that won’t show up on an X-ray or an MRI or a blood test.
Three weeks after my late night visit to the ER, my body began to fall apart,
one cell, one tissue, one body system at a time. There wasn’t a part of me that was
not affected in some way. It was terrifying. And there was no cure, no treatment, no
way to reverse the damage. One doctor from a very famous clinic actually told me
the only cure was time, basically, go home and wait to get better. Nice.
Four years later, I am still recovering. Four years later, fluoroquinolones remain
popular, widely prescribed antibiotics. Four years later, patients, like me, are still
given prescriptions for “suspected” infections that were never cultured and
without informed consent. (Informed consent implies that the patient was actually
informed of the risks. How would that conversation go? “All right Ms. Frank, there
is a slight chance that you might possibly have a minor infection that I don’t have
time to culture. Here is a prescription for an antibiotic that could possibly make
your tendons snap, disable you for years, and cause permanent nerve damage,” said
no doctor ever.)
In spite of all the things that haven’t changed in the last four years, progress is
being made and the times, they are a-changing! Today, there is a national nonprofit,
the Quinolone Vigilance Foundation, dedicated to raising funds for research
and educating medical professionals. Today, there are two Citizen’s Petitions
before the FDA requesting additional Black Box Warnings be added to Levaquin’s
label, specifically for Mitochondrial Toxicity and Psychiatric Effects. Today
research on quinolone reactions is under way at the University of San Diego and
the University of Rochester. Today, there are patients, like me, speaking out about
the dangers of these drugs and demanding to be heard.
I no longer look like I fell off a cliff, although some days I still feel like I have.
I will never be the person I was before December 2010, but I remain hopeful. I am
hopeful that one day fluoroquinolone antibiotic toxicity will be understood and
effective treatments will be developed. I am hopeful that doctors will become
better educated about the risks of quinolones and only prescribe them for life threatening
infections. I am hopeful that one day no one else will needlessly fall off
the same cliff I did, the cliff I call Levaquin Mountain.
About the Author:
Ms. Frank serves as the Public Relations Director for Quinolone Vigilance Foundation (QVF). Ms. Frank is an educator. She holds degrees in Theatre and Drama from Trinity University (B.A.) and the University of Michigan (M.F. A.), as well as a Master’s degree in Elementary Education from the University of Phoenix. In addition to volunteering for QVF, Ms. Frank serves on the Executive Board for her local teacher’s association and political action committee. Ms.Frank has experienced firsthand the damage that can be caused by fluoroquinolone antibiotics. She is committed to educating others about the risks associated with these powerful antibiotics. She has been featured in several news stories.
Jenny@saferpills.org
ABC2 airs follow-up news story
Follow-up news story from WSB-TV Atlanta aired this evening. This follows the February 2 story.Thank you Reporter Jim Strickland, WSB-TV and everyone who came forward to share their stories.
Monday, February 2, 2015
ABC2 airs story about Levaquin risks
ABC2 aired a news story about the dangers of Levaquin. Reporter Jim Strickland interviewed Kathy Dannelly, whose husband Chris died after taking Levaquin, as well as Quinolone Vigilance Foundation Assistant Director Donna Schutz and her fiancee Jeff Stephens, who is disabled after taking Levaquin.
http://www.wsbtv.com/videos/news/channel-2-investigates-complaints-about-popular/vDDZZS/
The Dannelly family
Jeff Stephens
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