Monthly Archives: May 2018

My Dear Friend Suzanne

My friend Suzanne was “floxed” as badly as anyone I have ever heard of. She was bed-bound for about a year. She was almost completely paralyzed for a period of time, and it even hurt for her to chew and blink. Every single tendon, ligament, and muscle in her body was damaged and weakened, and she experienced body-wide pain. She suffered from profound fatigue and weakness, and other toxicity symptoms that are far too numerous for me to list. Every cell in her body was adversely affected by the Cipro she took post-appendectomy. Her friends and family feared for her life for a long time, and there were even some times when she didn’t know if she would make it through.

She did make it through though. Suzanne was initially floxed in 2011, and I became familiar with her journey in 2012 when I saw a video of her taking her first steps post-flox (walking out of a pool while doing physical therapy). I had the pleasure of meeting her in-person in 2013 when we both went to Washington D.C. to advocate for fluoroquinolone toxicity awareness, recognition, and change in how fluoroquinolones are prescribed. At that time, Suzanne could walk several steps at a time, though her Achilles tendons were damaged in a way that made it impossible for her to put her heels to the ground, and she always had to have a wheelchair nearby. In-person I got to see what a strong, lovely, kind, thoughtful, interesting, and spirited person Suzanne is. We became friends after that meeting, and corresponded regularly.

In one of her messages to me she said, “While I appreciate your efforts in telling people that recovery is possible, I am not going to recover.  Too much damage has been done.  Some of the damage is irreparable.  I just need to come to terms with it.”

I responded with the post, “Redefining Recovery.” Here is an excerpt from it:

She knows her body, so who am I to argue with her?  She knows that the cartilage in her joints is not going to grow back.  She knows that she will never be able to do the physical things that she used to do with ease before she got floxed, because some of the damage done to her truly is permanent.  She will never run, she will never jump, she will never skydive or play soccer.

She has to come to terms with these things – these limitations that were unfairly and unjustly inflicted upon her.

She IS coming to terms with them.  As difficult as it is, she is finding peace and acceptance of her current condition and realistic future prospects.

Her story is not one of doom and gloom though.  Her story is one of perseverance and strength.  It is an amazing, beautiful recovery story.

My friend has come so, so, incredibly far.  She was completely paralyzed for a while – to the point where she couldn’t even chew and blinking was painful.  Now she can stand and even take a few steps.  She is working hard, with physical and mental therapy, to recover.  And she is recovering.  She is improving every single day.  She is working incredibly hard to do things that most people take for granted – chewing, walking, showering, having lunch with friends, etc.  She is doing those things.  Each one of those things is an accomplishment.  Each one shows recovery.  Each step that she takes is the result of a huge amount of strength, perseverance and bravery.

Suzanne continued to show a tremendous amount of strength and resiliency as her body healed. She had good days and bad, but overall, her momentum was forward, and her capacity increased. She never got to the point that she could return to work, or jog, or do many of the other things that she used to do pre-Cipro, but she did get back to living life. When I saw her again in 2016 she was able to drive, and even walk around without a wheelchair nearby.

Lisa and Suzanne

In 2017 she had a relapse in which the connective tissues in her hands and wrists were attacked, and she was scared that she wouldn’t be able to use her hands any more. Though that relapse was horrible and painful, she survived it, and emerged from it able to use her hands (not like she did before she got hurt by Cipro, but well enough that she was able to live her life).

In 2018 she has suffered a horrible relapse that she is still going through. She is completely bed-bound again, and is suffering from partial paralysis and severe pain. Her neck is swollen and painful, and it hurts for her to both swallow and breathe. She is suffering from CNS symptoms that include hallucinations and dark thoughts. She describes her situation as, “I am currently bed-bound, can’t walk or talk, and am living on baby food and pureed soup. I am suffering from extreme pain in the front of my neck and esophagus and also from central nervous system issues.”

Again, her family, friends, and community are scared for her. I’m scared for her.

I once wrote to her that if she was floxed as badly as I was, she would still be running–but if I was floxed as badly as she was, I’d be dead. I think it’s true too. She’s an amazingly strong person. She is far stronger than I am. She has been through so much pain and suffering, and she got through it, and now it’s being thrown back at her again. It’s awful, and I hate that such an amazing person is being subjected to such horribleness.

Though Suzanne is an incredibly strong person, this relapse is testing her strength and resolve. Her quality of life is horrible right now, and she is grasping for hope that things will get better. One glimmer of hope is that some fellow-floxies have been helped by stem-cell treatments, and she is scheduled to receive a stem-cell treatment in July. She has many obstacles to overcome before she can get the stem-cell treatment. It involves leaving her home and traveling thousands of miles–likely by plane–and that seems difficult-to-impossible right now seeing as she is completely bed-bound. Additionally, money is standing in the way. These treatments are expensive, and she needs help paying for her treatment. She has started a fundraiser to raise funds to cover the treatment and travel expenses. HERE is a link to her fundraiser page (or you can click the pic below to view it):

If you can please help by donating money, your help will be greatly appreciated!

I can’t know whether or not the stem-cell treatment will help Suzanne, but she needs something to work–something to help turn her body around again, and I hope that the stem-cell treatment will be that for her.

Suzanne is a dear friend and a wonderful person. She has helped hundreds, if not thousands, of people in the “floxie” community through providing guidance and advice. She has advocated for victims of fluoroquinolones endlessly in her community of Clearfield, Utah, in Washington, D.C., and also in our online community.

Any help you can give will be appreciated. Thank you for your consideration!

 

Fluoroquinolone Antibiotics Associated with Carpal Tunnel Syndrome

It is well-known and well-documented that fluoroquinolones weaken and destroy musculoskeletal tissues–especially, but not limited to, tendons. 

Additionally, it is known that fluoroquinolones cause neurological problems, and can lead to painful and debilitating peripheral neuropathy. (In 2013, fluoroquinolone warning labels were updated to note that Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin, and Floxin/ofloxacin can cause permanent and disabling peripheral neuropathy.)

Given that fluoroquinolones disproportionately affect the tissues in joints, and that they also adversely affect nerves (causing painful neuropathy), it’s not surprising that fluoroquinolone antibiotic use is associated with Carpal Tunnel Syndrome (CTS)–a medical condition that includes “pain, numbness, and tingling, in the thumb, index finger, middle finger, and the thumb side of the ring fingers,” as well as weakness and muscle wasting.

Both CTS and fluoroquinolone-use are common in America, and researchers Jasmine Z. Cheng, Mohit Sodhi, Mahyar Etminan, and Bruce C. Carleton, examined how they are related in “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” published in the journal Clinical Infectious Diseases in August, 2017.

In “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” the researchers found that, “Any use of FQ within the year prior to CTS diagnosis was associated with a 34% and 36% increased risk of CTS in the primary and sensitivity analyses, respectively” and that:

“The results of our study are consistent with an increase in the risk of CTS with FQs. The risk was consistent among all risk periods with a slight increase among past users, which may be due to the longer period elapsed for CTS to manifest itself. FQ-related neurotoxicity can persist cumulatively in relation to exposure levels [8, 9]. The exact mechanism by which this occurs is unknown [9], but proposed models include direct nerve inflammation and ischemia from toxic metabolite and free radical formation [10], and FQ-induced tendonitis/tendinopathy causing mechanical compression upon the adjacent nerves (eg, median nerve) that share the carpal tunnel [11]. Reports of nerve biopsy studies on patients who have experienced FQ adverse events have revealed significantly reduced nerve fiber density consistent with small fiber neuropathy, which may be a potential mechanism of CTS [12]. Although neurotoxicity is the second most commonly reported adverse event, with several studies documenting FQ association with central and peripheral nerve damage [8, 9], this is the first large-scale study exploring the relationship between FQs and CTS.”

CTS is a malady that affects thousands of people and has societal costs in the millions of dollars. In “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” the researchers note that:

“CTS is a disease of significant societal burden with a prevalence of 5% and incidence of up to 2.3 per 1000 person-years [4, 5]. CTS causes loss of function and decreased quality of life for individual patients, and also comprises a large cumulative drain on healthcare and socioeconomic resources from loss of productivity and worker’s compensation claims [6]. One study of 4443 CTS claimants in Washington State estimated a cumulative socioeconomic cost of US$197–$382 million over 6 years for this cohort alone [6].”

Fluoroquinolones are increasing the risk of CTS in millions of people (20+ million prescriptions for fluoroquinolones are written each year). Are doctors or patients aware that they are increasing the patient’s chances of CTS–a painful, debilitating, and costly condition–when fluoroquinolone antibiotics are taken? I doubt it, but they should be.

Please spread the word about how dangerous fluoroquinolones are by sharing posts, news articles, and research articles that connect fluoroquinolones with other illnesses. It wouldn’t occur to most people that a commonly prescribed class of antibiotics could be connected with CTS, psychiatric illness, pain, pseudotumor cerebri, tendon damage and ruptures, or multi-symptom chronic illnesses. But fluoroquinolones ARE connected with those, and other, diseases and syndromes. Articles like “Fluoroquinolone Use and Risk of Carpal Tunnel Syndrome: A Pharmacoepidemiologic Study” help to provide evidence of the extensive damage that fluoroquinolones do, and I am grateful to the researchers who examined the connections. Please spread the word so that doctors and patients alike are informed. Thank you.

 

 

7 Things You Should Never Say to a Floxie

This awesome, kick-a** post was written by my wonderful, thoughtful, irreverent, amazing, floxie friend Michelle. You can hear more about Michelle’s experience with fuoroquinolone toxicity on her episode of The Floxie Hope Podcast – https://floxiehope.com/2017/07/17/floxie-hope-podcast-episode-22-michelle/.

The Barefoot Aya

If there’s something that bothers me to no end, it’s when someone insults my intelligence. When people deny fluoroquinolone toxicity, an extremely horrible thing that happened to me, assume authority, and insult my intelligence, it’s probably the worst thing ever. Here are a few things you should never say to a floxie:

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