Tag Archives: Facebook

Patience and Kindness

Perhaps it’s because of the winter solstice dark and cold, or because 2019 was a particularly bad year for some people, or because being floxed SUCKS, or because of fear, or because nuance can be difficult to convey via the internet, or because of a million other potential reasons for ill moods, but it seems to me that people have been particularly impatient, rude, and even hateful on the floxie facebook pages and groups–including the floxie hope page and the fluoroquinolone wall of pain page, both of which I manage. I’m pretty decent at ignoring unpleasant things and avoiding confrontation, but the comments that are mean-spirited are starting to bother me. Perhaps in recognition of the holiday spirit or the change of the year (and decade), I would like to make a request – can y’all please be nice?

No one knows the perfect way to go through fluoroquinolone toxicity. No one knows the correct way to cure this. Everyone is experimenting and trying their best. Some people try things that they hope will be helpful or curative that have hurt others. The people who try these things are not stupid or trying to rub an adverse reaction in anyone else’s face. Sometimes knowledge of best practices shifts and what someone tried years ago is now known to hurt floxies. It stinks, but it happens. There’s no need to belittle people for what they tried years ago – or what they tried yesterday. People are doing their best to heal with the information they have. Feel free to give more information, but I would like to ask people to please be thoughtful when “correcting” others.

A common criticism on the floxie hope facebook page is that posts are old. Yup – some of them are. This site has been around for 6.5 years – since June, 2013. I put older posts up on the floxie hope facebook page because I figure that some people will still get value out of the posts. I sincerely hope that they are helpful, hopeful, or otherwise valuable to some of the people who see them. I also don’t think that 6 years is that long, or that a 6-year-old post is less valuable than a 6-hour-old post. However, if some of the information is out-dated or incorrect, I apologize. I did the best I could at the time I wrote each post, and I’m still doing my best now. I try to post accurate and backed-up information, but sometimes I’m wrong about an assertion. It happens. I’m a blogger. This site is my blog, not a peer-reviewed journal. I have always tried my best to be correct, but I don’t have the resources to verify any of my assertions about the causes or effects of fluoroquinolone, so please take everything I write with that grain of salt.

I also put up old posts because, frankly, I’ve gotten tired of doing fluoroquinolone research, putting together pieces of information from various sources, and formulating thoughtful and informative posts. I don’t have the emotional or intellectual energy to do that like I used to. I apologize. I wish I still had that energy and passion. But, to be honest, it has waned. I miss the passion that I once had, and I feel like the posts I have written in the last year-ish are not particularly inspired (or interesting). I would LOVE to have thought-provoking, interesting, inspired, passionate posts on this site, and I invite anyone who is interested in putting a post on floxiehope.com to send me what they’d like to post. This site has a decent-sized audience and it’s a good way to say what you want to say about fluoroquiolone toxicity to the community. Please let me know if you’re interested in writing for floxiehope.com (through either clicking THIS LINK or on the pic below).

One more thing that is a bit tangential – Facebook is cracking down on a lot of sites and groups, and I hope that the fluoroquinolone toxicity community on Facebook doesn’t get hurt by the crackdowns. I don’t think I’m breaking any FB rules, but even without thinking I’m breaking any rules, I’m still having some issues. This notice is currently on the fluoroquinolone wall of pain facebook admin page:

I clicked on the “learn more” link and, as far as I can tell, all rules have been followed. But maybe I did something inadvertently that was against facebook’s rules. Or, maybe they’re wrong. Either way, facebook has a massive amount of power to affect our reach and our ability to spread the word about fluoroquinolone toxicity, and if they shut down the pages and groups related to fluoroquinolone toxicity, well, that will be an awful shame. Facebook has facilitated the growth of this community (as I’m writing this, the Fluoroquinolone Toxicity Group on Facebook has 10,761 members). It has facilitated people sharing information about this illness, recovery, coping, etc. I am grateful to Facebook for all that it has offered. But what it gives, it can take away. I’m slightly worried that a wrong move can result in the disillusion of a major meeting-ground for floxies. I hope that we can continue to use facebook, and it would be a shame if we couldn’t and had to start over on a different platform. If you have a problem with something that is posted on the floxie hope facebook page or the fluoroquinolone wall of pain facebook page, please contact me rather than reporting it to facebook. Maybe then we can stay in their good graces.

*****

Warning Signs of Fluoroquinolone Toxicity

Almost every time I mention how Cipro messed me up, I get the response, “Oh yeah, I’ve taken that – it doesn’t affect me.”  To which I respond, “I took it several times before I reacted to it too. My body went completely hay-wire the second time I took Cipro. Don’t take it again.”

Adverse reactions to fluoroquinolones aren’t allergic reactions, they’re something else. The pathology of adverse reactions to fluoroquinolones is unknown – to anyone (or, if someone knows, they’re not publishing research papers about it). My guesses to the pathology can be found at https://floxiehope.com/2013/06/20/what-is-fluoroquinolone-toxicity/.

Unlike allergic reactions, adverse reactions to fluoroquinolones often occur long after the fluoroquinolone use has stopped. Antihistamines do nothing to stop an adverse reaction to a fluoroquinolone (though they may be able to help with some of the inflammation symptoms and they don’t seem to hurt most Floxies).

Though some people react to their first dose of a fluoroquinolone, many don’t, which leads them to falsely believe that these drugs are safe and that they won’t react to them in the future. Unfortunately, an adverse reaction to a fluoroquinolone can occur even if (maybe especially if – because there is (anecdotal) evidence that fluoroquinolones accumulate in the body and that there is a “tipping point” at which the body overloads) they have been taken with no adverse reaction in the past.

Looking back, I had some of these warning signs after I took Cipro the first time, in 2010. My eyelid twitched and I developed strange, but passing, abdominal cramping.  I experienced a “weak bladder” that I attributed to genetics and age. I had itchy legs at times and just thought it was dry skin. I didn’t connect any of these things to the prescription antibiotics that I took to treat a urinary tract infection.

If I had connected those symptoms to the fluoroquinolones, I may have been able to avoid taking Cipro again, and I may have avoided the pain and suffering that I went through starting in December, 2011.  (https://floxiehope.com/lisas-story/). I hope that this list of minor symptoms serves as a warning to you.  Please don’t take any fluoroquinolone antibiotics no matter what, but especially if you are experiencing any of the following, heed your body’s warnings and stay away from these drugs!

What FQ can do (HINTS AND CLUES THAT MIGHT SAVE YOUR LIFE)

Perhaps you have taken quinolones in the past and you think that they worked well and that you did not react negatively to them. Check the following subtle symptoms of the beginning stages of a quinolone intoxication from an earlier treatment and the normal interpretations that people make of them.

* You had a strange bout of tendinitis, for instance in the outer tip of the hip, normally diagnosed as trochanteric bursitis caused by tight belts or resting on you side at night. The same applies to other areas of the body, like the elbow (epicondylitis) diagnosed as an overuse of your tennis racquet or gardening practices, but you remember that you had never had it before.

* It takes you longer to recover after exercise. It is not alarming and you have not paid much attention to it.

* You sleep worse than before; it seems normal as you have a lot of pressure at work.

* From time to time you have some small throbbing pains in different parts of the body. They last only for a few seconds, so there is nothing to worry about it.

* It is strange- but you have occasional twitching in an eyelid, or any other part of the body. It is not painful.

* Some nights you feel some mild itching migrating along your body. One brief itch here, and another there. It is more intense in the scrotum or groin. Instead of identifying it as a peripheral neuropathy, you conclude that your clothes, your perspiration or the new brand of soap that is more irritating must be causing it.

* You feel some stiffness, and your range of movement is not as full as before, especially in one or both legs, but it is normal because you are getting older.

* You do not tolerate coffee as well as before. Now you have to reduce the amount of coffee that you used to drink.

* Your memory is not as good as it used to be. The cause may be too many things to think about and too much stress. And you are no longer a young person.

* There is an urge to urinate when the bladder is partially full. When you feel the need to urinate you have to rush for the toilet. Most urologists think that it is due to a dysfunction associated with a benign enlarged prostate but in reality it is a neurological deficit caused by the prescriptions of quinolones that they gave you.

* You cannot flex fully, or strongly, your big toe (one or both), or sustain the flexion for more than a few seconds. This is an indication that your large nerves (anterior tibialis) have started to fail due to the toxicity. This sign is a strong warning that your body will not tolerate more quinolones.

* Sometimes, you have nightmares while falling asleep that scare you. How strange you think. They are toxic panic attacks that reflect toxic damage to your brain.

If you have experienced some of these symptoms since you took your first quinolone, perhaps you have reached your first threshold of tolerance, that -once surpassed- can result in the destruction of your life soon thereafter if you take more quinolones.