Monthly Archives: December 2015

Dear Epidemiologists – Please Take a Look at Fluoroquinolones

FQWallofPain

This paragraph, in a 2013 New Yorker article entitled The Big Sleep, caught my attention:

“In a recent paper in the online edition of the British Medical Journal, Daniel Kripke, a professor emeritus at the University of California San Diego School of Medicine, examined five years of electronic medical records collected by a health system in Pennsylvania. He compared more than ten thousand patients who had been prescribed a sleep medicine—most commonly Ambien—and more than twenty thousand patients who had not. After adjusting for age, gender, smoking habits, obesity, ethnicity, alcohol use, and a history of cancer, and after controlling, as much as possible, for other diseases and disorders, Kripke found that people who had taken sleeping pills were more than three times as likely to have died during the study period as those who had not. Those on higher doses of the drugs were more than five times as likely to have died.”

The drug featured in the article was a new sleeping pill called Suvorexant, and the quote is about Ambien, but it made me wonder–Can someone PLEASE do a similar epidemiological study for fluoroquinolones? I want to know how health outcomes are for those who take fluoroquinolones versus those who take other antibiotics.

The symptoms of fluoroquinolone toxicity are similar to the symptoms of autoimmune diseases like R.A., M.S., Lupus, scleroderma, and other autoimmune conditions–and several people have been diagnosed with those diseases after experiencing fluoroquinolone toxicity. Fluoroquinolone toxicity symptoms are also similar to those of fibromyalgia, M.E./C.F.S., P.O.T.S., and other “mysterious” diseases of modernity. Fluoroquinolone toxicity, like those diseases, features peripheral neuropathy and central nervous system disturbances (like brain-fog, intractable insomnia, etc.). Psychiatric disturbances have been commonly reported among those suffering from fluoroquinolone toxicity. Severe musculoskeletal problems among those taking fluoroquinolones have been reported (and actually studied). Frighteningly, some who have experienced fluoroquinolone toxicity have experienced symptoms of neurodegenerative diseases like A.L.S. and Parkinson’s.

The warning labels for fluoroquinolones are 43 pages long, and list many of the symptoms of fluoroquinolone toxicity. In the November 5, 2015 FDA meeting regarding fluoroquinolones, it was acknowledged that symptoms of fluoroquinolone toxicity are severe and that they resemble the symptoms of many diseases. Fluoroquinolones have also been noted as a source of permanent disability, and delayed adverse effects have been experience and documented. The FDA panel at the November 5th meeting noted that further studies of fluoroquinolones are needed.

YES, further studies are needed.

We need long-term studies that determine whether or not people who are given fluoroquinolones are more likely to be diagnosed with an autoimmune, neurodegenerative, psychiatric, or “mysterious” disease than those who don’t take fluoroquinolones.

I hope that someone takes a closer look at fluoroquinolones to see what the long-term health consequences of them are. Patients and physicians alike should know whether or not there are long-term consequences to taking a prescription drug–so they can adjust their actions accordingly.

Additional musings on this topic can be found in the December 14, 2015 post on Hormones Matter, “Dear Epidemiologists, Consider Fluoroquinolones.”

flu tox get help you need banner click lisa

 

Happy Holidays 2015

happy-holidays-cartoon-hd

Happy Holidays, friends!

For those who celebrate Chanukkah, HAPPY CHANUKKAH!

For those who celebrate Christmas, MERRY CHRISTMAS!

For those who celebrate Kwanzaa, HAPPY KWANZAA!

And for those who just want to celebrate the solstice, HAPPY SOLSTICE!

I hope that each of you has a lovely holiday season, filled with love and joy! I hope that any pain you’re experiencing because of FQ toxicity is lessened by the warmth and love of family and friends.

Though I sincerely hope that your holidays are filled with joy and love, I know that the holidays can be difficult for many people–especially those dealing with mysterious, chronic illness (like fluoroquinolone toxicity).

It’s difficult enough to feel like your body is falling apart–it’s even rougher when you’re expected to decorate the house.

It’s difficult enough to have a mysterious illness that most medical professionals don’t understand–it’s even rougher when family members don’t understand.

It’s difficult enough to have lost your job and income because of your illness–it’s even rougher when you feel guilty about not being able to afford presents for your loved ones.

It’s difficult enough to deal with horrible food sensitivities–it’s even rougher when everyone thinks that your food sensitivities are made up and that you should just have a cookie.

It’s difficult enough to deal with fatigue and exhaustion–it’s even rougher when kids need your time, attention and energy.

The holidays can, without a doubt, be a time of struggle for those dealing with multi-symptom, mysterious illnesses like fluoroquinolone toxicity.

I hope that those who are dealing with pain, exhaustion, lack of acknowledgement, financial troubles, grief, loneliness, etc. this holiday season are able to find support, love and healing. If those aren’t possible, I hope that you just are able to get through the season not too terribly scathed.

I hope that the traditions of the season give you comfort and joy. I hope that sitting by a fire warms your bones, and that hot apple cider warms your tummy. I hope that you get and give presents that show you and your loved ones that you are, indeed, loved. I hope that you enjoy some delicious food. I hope that you feel loved and appreciated and that both lessen the pain that you’re experiencing. I hope that you feel grateful for the gifts that remain in your life, because cultivating a feeling of gratitude is healing and good for the soul. I hope that this is a time of healing for your body, mind and spirit.

I truly wish you Happy Holidays, friends!

Huge hugs,

Lisa

Post Script – Tragically, several people have lost their battles with fluoroquinolone toxicity recently. My heart aches for their loved ones. I’m sure that this holiday season will be especially difficult for them, and I am so, so, so sorry for their losses! I hope that they are able to find some hope and healing even though the holidays will, undoubtedly, be difficult. Huge hugs to each of you!

 

flu tox get help you need banner click lisa

In Memory of Dr. David Flockhart

On November 26, 2015, the floxie community lost Dr. David Flockhart, M.D., Ph.D., a beloved physician and researcher who passed away at his home in Indianapolis, surrounded by his family, after a year-long struggle with an aggressive form of brain cancer called glioblastoma multiforme.

Dr. Flockhart was a beacon of hope for many people dealing with fluoroquinolone toxicity. He acknowledged the harm done by fluoroquinolones, and was able to help hundreds of floxies with both his vast knowledge of the harm that fluoroquinolones do, and personalized treatment protocols. His floxed patients loved him for his caring bedside manner and he was considered by many to not only be a physician, but also a friend. He will be missed by many.

A lovely obituary for Dr. Flockhart can be found here – http://sideeffectspublicmedia.org/post/remembering-david-flockhart-md

From the above obituary, it is noted that, “Over the course of his career, he (Dr. Flockhart) became one of the world’s foremost authorities on drug interactions and reactions. Patients from around the nation sought his opinion when other doctors insisted they were simply imagining or inventing sometimes painful and debilitating side effects.”

Dr. Flockhart spoke out to the media about adverse effects of fluoroquinolones. He noted in the PBS Newshour Frontline expose, “Certain Antibiotics Spur Widening Reports of Severe Side Effects” that, “You don’t use these big guns, if you like, for killing mosquitoes, for little limb infections. You should use them appropriately for big infections that they’re useful for.”

Also, reported in the Washington Post article, “It Pays to Read the Warnings When You Open Up a Prescription,” “’The vast majority of physicians don’t even know how to report side effects to the FDA. They don’t have a clue,’ says David Flockhart, head of the Department of Clinical Pharmacology at the Medical School of Indiana University. ‘And there’s a psychological resistance to believing that what they’ve done has hurt.'”

Dozens of other quotes from Dr. Flockhart about fluoroquinolones can be found throughout the internet.

Dr. Flockhart didn’t only focus on fluoroquinolone toxicity. His career in research and medicine had many facets. He was a pioneer and leader in the field of pharmacogenetics, the understanding of how an individual’s genes affect his or her response to drugs. Additionally, “He published more than 250 articles, reviews, and book chapters, and was a member of many prestigious professional organizations. He received numerous awards, including the Leon I. Golberg Memorial Lecture Series Award from the University of Chicago, the Rawls-Palmer Award for Progress in Medicine from the American Society for Clinical Pharmacology and Therapeutics, and the Nathaniel T. Kwit Memorial Distinguished Service Award from the American College of Clinical Pharmacology.” (quoted from his obituary)

Candy Markman, a past board member of Amnesty International’s U.S. section and a personal friend of Dr. Flockhart noted that, “He was an enormously compassionate human being who really respected other human beings.”

My condolences to Dr. Flockhart’s family, friends, patients and associates. He is missed.

 

flu tox get help you need banner click lisa

 

The Healing Power of the Sea

Lisa Kauai

If I could turn back time, and I had to go through the acute stage of fluoroquinolone toxicity again, I would forego 90% of the doctors’ appointments and I would head straight for the beach. Really–I’m not joking at all. The times that I’ve spent at the beach, and, specifically, in the ocean, have been incredibly healing for me. The sea has given me significant symptom-relief, and I have felt great progress in my healing every time I have visited the ocean post-flox.

The sea is like a giant mineral bath. It is full of magnesium, sodium, and trace minerals (including iodine). Our bodies absorb these minerals through our skin. As most who are reading this know, fluoroquinolones deplete the body of magnesium, iron and other minerals. Soaking in ocean water can help to replace those minerals. Additionally, fluoroquinolones damage the thyroid, and the iodine in the sea may help to repair the thyroid.

I am guessing that most of the benefits I feel while at and in the ocean have to do with the absorption of minerals from the sea into my body through my skin, but there are other benefits to being at the beach too. The times that I’ve gone to the beach post-flox have all been times when I’ve been on vacation, and I have been relaxed while I’ve been there. De-stressing is good for everyone, especially floxies whose GABA neurotransmitters are downgraded, causing them to have difficulty relaxing (though the difficulty relaxing tends to be paired with fatigue – a horrible combination, for sure). I also got tons of vitamin D3 from the sun while at the beach, and vitamin D3, as well as other beneficial things from the sun, are anti-inflammatory and good for the body.

This is a bit woo-woo, but I’ve always felt like being in the water was good for me energetically. It feels as if my nervous system is both energized and relaxed when I’m in the water. In my recent interview with Dave Asprey on Bulletproof Radio we chatted about this. The healing effects of submersion in water for people dealing with multi-symptom, mysterious illnesses, are documented–though I’m not sure of the mechanism through which water heals.

Post-flox, I’ve always felt better in the water. Swimming, even in chlorinated pools, has been healing for me. But I never feel as good in a pool as I do in the ocean. The pool is healing, but the ocean is magical for me. It helps–immensely.

I was never a beach person before I got floxed. I was born and raised in Colorado and I am a mountain girl through and through. I never understood the appeal of beaches–they’re sandy, the sea-water makes my skin sticky, and I both overheat and get sunburned easily. After I got floxed though, I started to appreciate the water because it was healing and energizing for me. About 10 months post-flox I went on vacation to Hawaii and felt the healing power of the sea. Being in the ocean felt AMAZING! Ever since then, I have gotten in the ocean whenever I have the opportunity, and each time it has been invigorating and healing. I guess that I’m a beach/ocean person now–there are worse changes in the world. :p

I hope that fellow floxie friends find the ocean to be as invigorating and healing as I do. The sea is one of my favorite kinds of medicine.

 

flu tox get help you need banner click lisa