Hello friends, my intention was to follow up every month regarding my progress recovering from getting floxed, but I missed the July update due to a variety of challenges and setbacks. If you have been following my recent posts, you have read about my devastating reaction to the generic equivalent of the fluoroquinolone antibiotic Levaquin, levofloxacin. Other common antibiotics in this class include:
Cipro (ciprofloxacin)
Avelox (moxifloxacin)
Tequin (gatifloxacin)
Today marks 82 days since my reaction to levofloxacin. Twelve weeks, and I have had only minimal improvement. Some days are better than others, and some are so bad I wish I could crawl into a hole in a cave on the moon to escape.
During this time, I have become somewhat of an unwilling expert on the subject of fluoroquinolone antibiotics and their effects. It's not something I ever could have planned for, but it's something I am trying to embrace (albeit bitterly, on occasion) in an effort to feel more in control of my health and my choices.
In the beginning of this floxie journey, I mentioned that I would be documenting successes as well as setbacks. As many victims of fluoroquinolone toxicity syndrome can attest, there is no one-size-fits-all cure to recovering from floxing. It is largely a "try, try, and try again" type of approach for most of us. However, here are a few things that have helped to alleviate some of the symptoms for me:
Magnesium
I can't stress this enough. Magnesium is your friend. Even before getting floxed, I am sure I was low in magnesium, as many people are. Magnesium deficiency can cause a variety of symptoms, including headache, fatigue, nausea, and loss of appetite. You can read more about the effects of magnesium deficiency here and here.
I have added magnesium through an oral supplement combined with calcium for better absorption, and a topical magnesium oil that I rub on sore muscles, or on the bottom of my feet when I go to bed at night. I find that if I miss even one day, my pain is greatly increased the following day. It certainly isn't a magic cure, but it does make a significant difference.
Tart cherry juice
There has been quite an increase in information recently about the health benefits of tart cherry juice, especially in regards to pain relief for condition such as gout, joint pain, urinary tract infection, and insomnia. From Prevention magazine to the Huffington Post, media all over the world has picked up on the many beneficial properties of tart cherries.
There are a couple down sides to tart cherry juice that I have found. First, it's terribly expensive, at least for me. It's hard to swallow (pardon the pun) a $16 price tag for a bottle of juice. Second, personally, the taste of the juice is quite strong for me. I mixed it with cranberry juice and it's actually pretty delicious that way. I have noticed when I make a point to drink a small glass every day, my pain level is noticeably reduced.
Tai Chi
Exercise, of any kind, is typically not advised during the acute phase of fluoroquinolone toxicity. Because of the damage caused to the tendons, ligaments, muscles, and fascia, adding any strain, however slight can potentially result in devastating injuries, including ruptured tendons (commonly in the Achilles tendon, and rotator cuff). For the last 12 weeks I have been essentially on bed rest by my doctor: no lifting, no bending, no squatting, no twisting, no stairs, no walking for long distances, no swimming, and no exercising.
Don't get me wrong, I certainly wasn't the most athletic person even before getting floxed, but being completely restricted from all movement, even normal activities such as doing laundry, or washing dishes, has been extremely difficult. Not only do my joints and muscles hurt, but I am weak. I have trouble moving a jug of milk from the refrigerator to the kitchen counter. So, finding something that allows me to move without straining anything is a challenge, to say the least. I turned to tai chi, which I do by following along at home via YouTube, and it has been a good start to heading off some of the atrophy and loss of flexibility that comes from being restricted from normal activity for so long.
I look forward to updating this blog in the future with additional helpful treatments and therapies for recovering from fluoroquinolone toxicity syndrome. This is absolutely one of the most difficult health challenges I have ever faced. There have been dark days, when I felt myself close to a point where I may have given up. But every time I got that low, I looked at the faces of the people around me that are fighting this with me every step of the way, and I know I can't let them down.
It's important to reduce your stress as much as possible, surround yourself with loving, compassionate family and friends, and forgive yourself for your limitations. YOUR body didn't let you down. A toxic medication did. Sending you all love and light and hope, and quick healing!
...and of course, here is the disclaimer:
The information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. The purpose of this website is to promote understanding and knowledge of various health topics. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on this website.
Saturday, August 1, 2015
Tuesday, June 16, 2015
One Month Post Flox
One month ago my world changed, perhaps permanently.
As you may have seen in my last post, the newest word in my dictionary is "flox." I imagine that you have never heard of the word before now, and if you haven't then you can certainly count yourself a lucky one. Of course, it's not necessarily a word recognized by the medical community, but if you are one of the luckier floxing sufferers you have a doctor or medical professional that is familiar with the devastating side effects drugs such as Cipro, Levaquin, and Avelox cause.
Perhaps the greatest side effect, that you will likely never see on any manufacturer's packaging insert, is the loss of self.
It's not the breath-stealing pain exploding in my joints. It's not the burning ache smoldering in my muscles and tendons. It's not the vertigo that causes the room to whirl like an out of control carnival ride. It's not the stiffness in my spine that makes it impossible to bend, twist, or lean. It's not the emotional upheaval from having your world stolen overnight by a medicine.
The worst thing, for me, is feeling like I've lost myself. I was a wife, a mother, a friend, and a full-time employee. Six pills was all it took to steal that from me. Instead of an active participant in my life, I am a bystander. I am a lonely onlooker, excruciatingly aware of what I had one short month ago, and what I no longer have.
Keep your head up, they say. It will get better, they say, It won't last forever, they say. But they don't live my life. They don't walk in my shoes. They don't have to look their loved ones in the eyes and say, for the thousandth time, "I can't."
This post isn't supposed to be about doom and gloom. And I certainly haven't given up. But this fight is a hard one. It's one of the hardest thing I've been faced with in my entire life. I'm just one month in, and still in what most would call the acute phase. I very likely have many more months ahead of me before I ever get back to normal.
Until then I will continue to fight for a new normal, and ignore the pain, the muscle cramps, the balance problems, and the depression. Until then, I will continue to push for therapies that help relive my symptoms and give me back myself. Until then, I will continue to look my seven year old daughter in the eyes and say, "I can't right now, but mommy won't stop trying."
As you may have seen in my last post, the newest word in my dictionary is "flox." I imagine that you have never heard of the word before now, and if you haven't then you can certainly count yourself a lucky one. Of course, it's not necessarily a word recognized by the medical community, but if you are one of the luckier floxing sufferers you have a doctor or medical professional that is familiar with the devastating side effects drugs such as Cipro, Levaquin, and Avelox cause.
Perhaps the greatest side effect, that you will likely never see on any manufacturer's packaging insert, is the loss of self.
It's not the breath-stealing pain exploding in my joints. It's not the burning ache smoldering in my muscles and tendons. It's not the vertigo that causes the room to whirl like an out of control carnival ride. It's not the stiffness in my spine that makes it impossible to bend, twist, or lean. It's not the emotional upheaval from having your world stolen overnight by a medicine.
The worst thing, for me, is feeling like I've lost myself. I was a wife, a mother, a friend, and a full-time employee. Six pills was all it took to steal that from me. Instead of an active participant in my life, I am a bystander. I am a lonely onlooker, excruciatingly aware of what I had one short month ago, and what I no longer have.
Keep your head up, they say. It will get better, they say, It won't last forever, they say. But they don't live my life. They don't walk in my shoes. They don't have to look their loved ones in the eyes and say, for the thousandth time, "I can't."
This post isn't supposed to be about doom and gloom. And I certainly haven't given up. But this fight is a hard one. It's one of the hardest thing I've been faced with in my entire life. I'm just one month in, and still in what most would call the acute phase. I very likely have many more months ahead of me before I ever get back to normal.
Until then I will continue to fight for a new normal, and ignore the pain, the muscle cramps, the balance problems, and the depression. Until then, I will continue to push for therapies that help relive my symptoms and give me back myself. Until then, I will continue to look my seven year old daughter in the eyes and say, "I can't right now, but mommy won't stop trying."
Friday, May 22, 2015
I've been Floxed
Two weeks ago, I had never heard of the word "flox," or the phrase "getting floxed," or the endearing name "floxie." It's amazing what can change in eleven days. People that have had serious adverse reactions to fluoroquinolone antibiotics such as Cipro (ciprofloxacin), Levaquin (levofloxacin), and Avelox (moxifloxacin) have dubbed themselves "Floxies," and now I am in their club.
A bit of background before we get started. The last several months have held some serious health challenges for me: I had a terrible, severe upper respiratory infection that lasted eight weeks from October to December, I broke my tailbone in January, I had a sinus infection in February, and I caught strep in March. Somehow, in April, I escaped from the health snowball I'd found myself in.
At the start of May, that changed however. I woke up early in the month with a hacking, productive cough that was eerily similar to the way my bronchitis had begun last winter, and in an effort to avoid getting ill like that again, I went immediately to my doctor. She agreed that it was prudent to treat this aggressively and gave me a prescription for an antibiotic called Levaquin. I had taken the same drug in the winter, after a Z-pack (azythromycin) and Keflex (cephalexin) had both failed to alleviate my symptoms. I believed that I had tolerated Levaquin before, and was eager to complete this course of medicine and stop my bronchitis before it really got started.
Nine days later I found myself in my doctor's office once again, this time in agony. Every joint in my body--and I *do* mean every joint--felt as if it was simultaneously broken and on fire. My neck, shoulders, elbows, wrists, knuckles, hips, knees, ankles, and spine ached and sparked electric fire with even the smallest movement.
I was aware of the black box warning on Levaquin that was added by the FDA in 2008 warning of the risk of tendon rupture, especially of the Achilles tendon, in certain vulnerable patient populations. I have never had a ruptured tendon, and not knowing what that pain would be, I was not confident that I was experiencing that side effect. I DID know, however, that something was terribly wrong.
In many ways, I am quite lucky. My primary care doctor and the nurse practitioners in his office are amazing, capable, compassionate individuals. The APRN that I saw quickly diagnosed a reaction to the medicine and insisted that I stop taking it immediately. She had no better suggestion for me than to rest and drink plenty of water, unfortunately.
Each day since then has been a challenge--physically, emotionally, spiritually, and mentally. I am consumed by pain, which is frightening in its intensity. It migrates from joint to joint, with one day my shoulders feeling the worst, then the next day it's my hips, and then the next it's my ankles. I am exhausted, I am cranky, I am depressed, and I am stressed out. All because of a medication that I took in good faith in an effort not to get worse.
Oh, the irony.
The good news--which I am holding on to with all the zeal of a bulldog--is that I was diagnosed quickly. Google helped me find the thousands and thousands of other people like me, people that were injured while taking a medication prescribed by their trusted medical professionals, and that were now left coping with a series of conditions that are difficult at best, and crippling at worst. Connecting with communities of others that have experienced the same symptoms is both uplifting and demoralizing.
I was literally in tears the first night as I crash-coursed my way through the many, many articles about the dangers of fluoroquinolone antibiotics. There were an overwhelming number of personal accounts detailing how profoundly people had been affected by the medication they had taken. It was difficult, in fact, to find positive stories, stories of survivors and thrivers.
I am still in the "acute" phase, which the general consensus tells me will last approximately a month. My doctor seems to think I will take six to eight weeks before recovering completely. I have read one story after another from other "floxies" that show a more sobering timeline: often six months to two years, if not longer before life gets back to some sort of normal.
I'm not going down without a fight, however. After all the challenges I have faced in my life, THIS is not how I'm going down. This will not be the end of me, if I have to fight tooth and nail to make it happen. So, if you have recently discovered that you, too, are a floxie, don't you dare give up hope. Yes, this sucks. It sucks beyond all possible reasoning, and not many people around you are going to truly understand the magnitude of what you are dealing with.
But don't give up.
There is an abundance of information at your fingertips via the Internet, there are support groups on Facebook and Twitter, and there are websites whose sole message is one of hope and healing. Two of my favorites can be found here and here. Educate yourself. Reach out to others. Surround yourself with loving family and friends that will support you while you heal. And most of all, don't give up hope.
Please check back soon, as I will be following up with my progress, and hopefully will have some more information for you regarding what treatments have worked for me, and what hasn't helped.
A bit of background before we get started. The last several months have held some serious health challenges for me: I had a terrible, severe upper respiratory infection that lasted eight weeks from October to December, I broke my tailbone in January, I had a sinus infection in February, and I caught strep in March. Somehow, in April, I escaped from the health snowball I'd found myself in.
At the start of May, that changed however. I woke up early in the month with a hacking, productive cough that was eerily similar to the way my bronchitis had begun last winter, and in an effort to avoid getting ill like that again, I went immediately to my doctor. She agreed that it was prudent to treat this aggressively and gave me a prescription for an antibiotic called Levaquin. I had taken the same drug in the winter, after a Z-pack (azythromycin) and Keflex (cephalexin) had both failed to alleviate my symptoms. I believed that I had tolerated Levaquin before, and was eager to complete this course of medicine and stop my bronchitis before it really got started.
Nine days later I found myself in my doctor's office once again, this time in agony. Every joint in my body--and I *do* mean every joint--felt as if it was simultaneously broken and on fire. My neck, shoulders, elbows, wrists, knuckles, hips, knees, ankles, and spine ached and sparked electric fire with even the smallest movement.
I was aware of the black box warning on Levaquin that was added by the FDA in 2008 warning of the risk of tendon rupture, especially of the Achilles tendon, in certain vulnerable patient populations. I have never had a ruptured tendon, and not knowing what that pain would be, I was not confident that I was experiencing that side effect. I DID know, however, that something was terribly wrong.
In many ways, I am quite lucky. My primary care doctor and the nurse practitioners in his office are amazing, capable, compassionate individuals. The APRN that I saw quickly diagnosed a reaction to the medicine and insisted that I stop taking it immediately. She had no better suggestion for me than to rest and drink plenty of water, unfortunately.
Each day since then has been a challenge--physically, emotionally, spiritually, and mentally. I am consumed by pain, which is frightening in its intensity. It migrates from joint to joint, with one day my shoulders feeling the worst, then the next day it's my hips, and then the next it's my ankles. I am exhausted, I am cranky, I am depressed, and I am stressed out. All because of a medication that I took in good faith in an effort not to get worse.
Oh, the irony.
The good news--which I am holding on to with all the zeal of a bulldog--is that I was diagnosed quickly. Google helped me find the thousands and thousands of other people like me, people that were injured while taking a medication prescribed by their trusted medical professionals, and that were now left coping with a series of conditions that are difficult at best, and crippling at worst. Connecting with communities of others that have experienced the same symptoms is both uplifting and demoralizing.
I was literally in tears the first night as I crash-coursed my way through the many, many articles about the dangers of fluoroquinolone antibiotics. There were an overwhelming number of personal accounts detailing how profoundly people had been affected by the medication they had taken. It was difficult, in fact, to find positive stories, stories of survivors and thrivers.
I am still in the "acute" phase, which the general consensus tells me will last approximately a month. My doctor seems to think I will take six to eight weeks before recovering completely. I have read one story after another from other "floxies" that show a more sobering timeline: often six months to two years, if not longer before life gets back to some sort of normal.
I'm not going down without a fight, however. After all the challenges I have faced in my life, THIS is not how I'm going down. This will not be the end of me, if I have to fight tooth and nail to make it happen. So, if you have recently discovered that you, too, are a floxie, don't you dare give up hope. Yes, this sucks. It sucks beyond all possible reasoning, and not many people around you are going to truly understand the magnitude of what you are dealing with.
But don't give up.
There is an abundance of information at your fingertips via the Internet, there are support groups on Facebook and Twitter, and there are websites whose sole message is one of hope and healing. Two of my favorites can be found here and here. Educate yourself. Reach out to others. Surround yourself with loving family and friends that will support you while you heal. And most of all, don't give up hope.
Please check back soon, as I will be following up with my progress, and hopefully will have some more information for you regarding what treatments have worked for me, and what hasn't helped.
Subscribe to:
Posts (Atom)