About Debora
Last year (2009) in September, I came across a blog, Death by Levaquin. The blog struck a huge chord with me because as you will see by the following, I have experienced something similar in my life. I have been in touch with John (the author of that blog) several times now, and I have promised him that I would join my voice with his and others who have started similar blogs. The following was my original post on his site:
4 months ago, my spouse Joe and I returned from a great vacation in Florida. Three days later, he was diagnosed with severe cellulitis in his legs from bacteria he picked up swimming in the Gulf of Mexico. He was first given an antibiotic that he was sensitive to because of its similarity to penicillin and switched to a sulfa based drug. Five days later he was in the hospital with a raging infection with Cipro running into a PICC line. A few days later they added Levaquin to the cocktail. When he came out of the hospital he was taking oral Levaquin and vancomycin IV. All the while he was complaining loud and long about the pain he was suffering in his feet, ankles, legs, hands and shoulder. The response to the hands and shoulders was “lets treat your left leg first….” since that was where the cellulitis was. Fast forward to now… he is in pain, hasn’t returned to work and has become depressed from the knowledge that he is most likely crippled for the rest of his life because he went on vacation. On Friday, after seeing a neurolgist and being diagnosed as having DIABETIC peripherial neuropathy (the Docs were all very careful to use the term “diabetic”) even though he has never had symptoms of PN up until now, he spoke with a co-worker. He told her that he thought he might have fluroquinolone poisoning. She said I know you do. Why? Because her spouse had the same thing. This weekend has been the best since our return from FL because he has the name of the neurologist that diagnosed this lady’s husband…. maybe next week will bring some hope. The pain won’t be gone, but at least now he has a name for the disorder and knows that he isn’t nuts.
If you have been affected by the horrible side effects of these medicines… all of them are nothing short of BAD… please ring the bell loud and long about the effects. Be your own advocate. Talk to your doctors, friends, family and strangers about the problems these drugs create. If your doctors or family or friends do not know about the problems, educate them. If they scoff at you or think you are delusional, hypocondriacal, or what ever other epithet they wish to throw at you, fight back with education. There are thousands, perhaps millions who have been affected by these drugs and there are voices calling out for attention and change. As I build this site I will be posting links to other sites, documents, articles and more.
Just know that you are not alone.
© 2009-2010
I was totally floxxed this time last year. It has been hard fight back. Now I feel flatlined a lot of the time, tho I have resumed my life. The floxxing still flummoxes me. I was LUCKY, my doctor said it was a reaction to the Cipro. I would not put one pill in my mouth then-they backfired. I almost died twice. the PAIN, the spazzing, the headaches, the mental deterioration and anguish. I could not eat, walk, omg I was white for months and yellow too. toxic floxic I was systemically poisoned by Cipro, this I know.
Also had kidney surg in May to remove huge stone. btw i have seen ciprofloxin stone on the web. I believe chelation is one key to remove the cipro/toxins.
So in September I switched to distilled water and that keeps my stomach okay now, that really made me feel like a human again to have an appetite!tho I got off disability in August. Lately it is hard to feel lucky, I think the worst of it all was the crazies/depression/but pretty hard to top even the memory of the sheer physical PAIN of floxing.
Now, I struggle with depression and still feel rather detached from my life.
The cipro detachment factor still surfaces ):
Oddly, now it is my arms and hands and tendons to bother me most tho when floxxed (FLOXIC) was my hip, abdomen, thigh, and down. If it burns, I stop. I kept the cane though. And I never over do. I adapted. And I hope and pray I NEVER have to put another rx pill in my mouth again.
Dear Debora,
I am so sorry to hear your story. I understand the devastation of having your life as you know it taken away from you with the swallowing of a pill. I will pray for you and your husband. Thank you for creating this resource for others to follow in your path. Thank you for your courage and strength.
Blessings,
Nikki
Debora, So sorry to hear about your husband’s floxing. I too am a victim of All 3 FQ’s, Avelox, Cipro & Levaquin. 66 Pills plus a co-rx with methylprednisolone for 42 pills twice. I am having severe tendon damage, no rupture “yet” but my arms and legs have slits in them; was told by one Philly neuro, “your atrophy is from being in pain these many years” & dxd me with CRPS/RSD(complex regional pain syndrome/reflex sympathetic dystrophy)I’d initially been dxd with “fibro” I also suffer Sjogren’s & Lupus & Lyme (I test neg for Sjogren’s borerline for lupus, currently neg for Lyme as they changed the criteria so more people are neg as to not make it look like there is an epidemic. I am also on FB; if you’d like to chat I go to the FQ Toxicity chat at Yahoo too. If you can let me know the name of the neuro you took Joe to, so I might look them up. I have an appt in a few weeks for a neuro in NY (my 2nd-first one told me I knew more than HE did-Peter Y. Kim @ Columbia, an assistant clinical professor and I got my degree from Google!)) I am also facing another sinus surgery out of state( I live in NJ & have to go to OH)!but never taking another FQ as long as I live! I’ve had chronis staph/strep going on 3 yrs!
The memory problems are horrible, jsut when I thought I was getting over it it pops back up, the new info seems to be the hardest for me to remember. I can read about FQ’s & not be able to reiterate the same info back to someone. Thank goodness for a favorites list & this computer! Take care & hope to hear from you soon!
Hi Cathy and thanks for commenting!
The neurologist (which I’ll email the name to you) has kind of backed off what she originally said… interesting because Joe was asked to be in a Pfizer sponsored study by one of the other neuros who was interested in Joe’s high level of PN. Once it came out that he had been floxed, she said well, he shouldn’t be in the study but he did have diabetic peripheral neuropathy. Sheesh.
Lately he’s had a chronic infection in his foot and has had to have several vanco IVs at the hospital because of his refusal of FQs. BUT, he was told by some of the nurses around the hospital that they have had several meetings about identifying adverse FQ reactions. I feel like this is an real step forward since, between us and another floxed person here in our town we’ve identified over 15 people locally who have had adverse reactions to FQs in the last 5 years.
IMHO, I believe that fibro is an adverse reaction to FQs as well… perhaps not all fibro but I am pretty sure that my fibro is a result of Avelox and Levaquin over a period of about 15 years. Those good ole sinus infections! I have had more than my share of “Here, take this.” samples shoved at me.
Keep trying to be well… I’ll email you the neuro info.
Best,
Deb