Tag Archives: neuropathy

Why All Recovered Floxies Are Only 99% Better

Every Friday Michelle Polacinski, a Floxie as well as the Director and Producer of ‘Floxed,’ sends out a newsletter to those who have subscribed to the ‘Floxed’ newsletter. The Floxed Friday updates are always interesting and thoughtful, and Michelle has given me permission to share them here. 
 
If you would like to receive the Floxed Friday updates directly from Michelle, please subscribe to the Floxed Documentary email list. You can subscribe through THIS LINK. Subscribing also helps Michelle to gain funding for the Floxed Documentary, and she doesn’t send out spam. 
 
The following was written by Michelle: 

It’s hard to bounce back from Fluoroquinolone Toxicity Syndrome. In fact, many people never do. For those who do, you may ask, How do you feel? Are you back to normal? Are you at 100%?

I don’t know a single floxie comfortable with saying they are 100% better. I never have. I also don’t think it’s possible to be “back to normal” or to who you were previously when something like this happens to you.

It’s traumatic. It changes your perspectives on life, on the medical system, on what the heck an antibiotic is, on what you put in your body, and the significance of everyday things. How can you ever be back to who you were, especially when you come back from a horrifying disability?

And no, rarely anyone can say they are 100% better because flare ups happen. Some symptoms never go away. Even if you feel good for years, one day you wake up with the worst chest pain in your life and you wonder, “Is this an aortic aneurysm?”

EBV and Nerve Damage:

I felt this way more recently with the onset of Epstein-Barr virus, which affects approximately 90% of the population, commonly known as mononucleosis or “mono,” and going back to a lot of the same supplements I took every day for years when I was at my worst.

I’ve been dealing with numbness in my hands again and it’s horribly frustrating. This came up after taking cacao, a neurostimulant, and it made me wonder, Are my hands getting better or worse?

A thing we floxies say is that “healing comes in waves.” Really. You’ll feel a symptom and it may come and go over the matter of a few days or weeks or months before you start to feel it get better. Maybe my long-time nerve damage in my hands is going through a healing process again thanks to the cacao or maybe it’s getting worse. I’ll never know and there is probably no PhD, no expert on Planet Earth, who has the answer to that question, so I just have to wait it out like everything else.

So for now, my pee is bright yellow all thanks to high levels of b-vitamins in my system, you know, to stimulate nerve healing, mitochondria healing, and all that stuff. Amy Moser mentioned in our interview that it takes about a month for one inch of nerve to heal and that her nerves are forever damaged after 8 years, so she believes.

Who knows?

What’s next for the Floxed Team:

We have awesome news to share.
We’re finally all meeting in Los Angeles to shoot some of our bigger interviews (shh) with some big researchers and medical professionals in the field next month.

I’m very excited since LA was my home when I was floxed and I can’t wait to meet some of these people I’ve only spoken to online or over the phone. I’ll be meeting even more friends/floxie family while we’re out there and this is my first time back home since getting floxed.

We’re also applying to more grants and we feel very positive about them, especially one that particularly focuses on female filmmakers making films about disability awareness (heck yeah we are).

***Wish us luck and please cross all your fingers and toes that we can get some of these grants. It would push the process along much faster***

Have a great weekend!

Best,

Michelle Polacinski
Floxie, Director, and Producer of ‘Floxed’

 

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.

 

 

The Floxie Hope Podcast Episode 11 – Diego

Diego Floxie Hope Podcast

I had the pleasure of interviewing Diego Vasquez for Episode 11 of The Floxie Hope Podcast.

Diego is thoughtful and wise.  His perspective on his floxing journey is poignant and beautiful.  I very much enjoyed speaking to Diego and he even brought me to tears during the interview.  I encourage all of you to listen to this podcast and share it with friends.  Diego has an amazing, uplifting, inspirational spirit.  You will be sure to be touched by this interview.

You can read about Diego’s Journey here – https://floxiehope.com/diegos-story-levaquin-side-effects/

You can listen to Diego’s Journey through these links –

https://itunes.apple.com/us/podcast/floxie-hope-podcast/id945226010

http://www.floxiehopepodcast.com/episode-011-diego/

Diego mentions that he is being treated for peripheral neuropathy by The San Antonio Neuropathy Center.  You can learn about the Center from this video –

 

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