1/1/16: Quick Update
Over the past year (ever since my 5-year mark) I've made multiple unsuccessful attempts at forcing myself to write a detailed update here, as I'm sure there are people stumbling upon my site & wondering how I'm doing--or if I'm even still alive. I am still alive somehow, but unfortunately I am also still completely disabled and living my "life" in bed. At some point I hope to work up the mental strength to write a more in-depth update, but I pretty much have PTSD now when it comes to the subject of floxing/fluoroquinolone toxicity. This has already stolen SO MUCH from me, I dread focusing on it any more than I already have to. My minutes, hours and days are spent relentlessly trying to distract myself from the reality of my situation. I am still alive (in the clinical sense only), I am still in severe pain, I am still unable to walk any further than I could six years ago when this nightmare began. I truly wish I had better news. I apologize to anyone who's emailed me and not received a response back. I just can't do it anymore. Thank you for your understanding.
"It could be worse--you could have cancer!"
I've had a few people now tell me, "It could be worse--you could have cancer!" I guess that's their attempt at making me feel better? Regardless, it's bullshit. First of all, cancer ends. You either beat it, or you die from it. THIS DOES NOT END! Cancer has treatments; this does not. Doctors acknowledge the existence of cancer; the vast majority of doctors do NOT acknowledge that floxing exists. Cancer shows up on tests; most of the damage caused by quin drugs evades traditional testing. Unless you physically rupture a tendon, most flox victims' x-rays, MRIs and even blood work will most often come back normal. This leads to all sorts of problems with being believed by doctors/friends/family, being able to sue the drug manufacturers for damages (tough to sue when you can't prove what a drug has done to you!), and being accepted for disability benefits. Untold millions of dollars are spent every year on cancer research. Call Bayer and ask how much they spent last year researching a cure for flox victims--victims of a syndrome THEY created! The answer is ZERO DOLLARS. And no one else is out there researching a cure for this either, short of us victims ourselves. There's no money in helping flox victims--only in creating them!
Lastly, there is sympathy for cancer patients. From my personal experience there is absolutely no sympathy whatsoever for flox victims. People do not call or email to see how you're doing. Literally every single one of my "friends" has drifted away on me over the past three years. My own family--who I LIVE with now--don't even speak of this. Sometimes I wonder if I'm the only one who's noticed that I've been in bed for THREE YEARS. It's literally not spoken about or acknowledged, as if it doesn't even exist. When this first happened to me back in 2009, I tried forwarding my mother various articles/websites/videos about floxing so that she could educate herself on what I was experiencing. When I later followed up with her about whether or not she'd visited the links I'd sent her, I was told she "didn't have time" or "the video was too long." Unbelievable. Meanwhile I'm lying here in agony day after day, month after month, year after year, constantly having to fight off the urge to end it all. Would this be the case if I were suffering with cancer? Would she not have time to read up on it? Would she act as if nothing is wrong? I suspect not! I have literally received more compassion from complete strangers on the internet (most of whom are floxed themselves) than I have from my own family and friends. This entire situation is fucking surreal.
UPDATE: My above statements have recently been CONFIRMED.
When this first happened to me, I quickly learned that there are two camps of flox victims--those who believe supplements have a place in treating FQ toxicity (usually newbies, I now know) and those who say not to waste your money--that supplements are useless in treating this condition (usually veterans). Well, you can see from the pic below which camp I decided to go with. I simply could not and would not accept the notion that there was nothing I could do to reverse this, and I'd quickly write off anyone who told me otherwise as being either negative or not knowing what they were talking about. There was no way in hell I was going to stand idly by as my body continued to literally fall apart more and more each day…I had to at least TRY to do something to stop it! I was certain that *I* was going to find a cure for this--even if no one else had yet! Certainly the cure was out there if I could only find it. And so I went supplement shopping online. I went to Vitacost.com and typed in "tendon" and "cartilage" and "collagen" and "connective tissue" and literally any product that came up, I bought. If someone online recommended I try something, I did. I've spent thousands of dollars on more supplements than I can possibly list--so many in fact that I eventually became one of Vitacost's "Top 100 Reviewers" on their site.
So how'd that work out for me? Well...not so great. I'm obviously still completely and utterly crippled and have noticed absolutely NO change whatsoever in any of my symptoms in response to any of the supplements I've tried. I think it's safe to say that supplements don't do SH!T to reverse the effects of floxing. I couldn't even entertain that possibility in the beginning of this nightmare, but I've accepted it now. There are still flox victims out there (almost always newbies or mild/moderate cases) who claim X helped them or Y helped them, but in all honestly they probably would have improved anyway with out it. So that's where I stand on the subject of supplements! My seasoned advice: Save your money. If there is any way out of this nightmare, it's time and time alone.
This is maybe 1/4 of the supplements I've purchased & tried over the past 3 years:
I have received numerous emails from other flox victims (many of them suicidal themselves) asking how I've managed to stick it out this long without killing myself. The answer is: I really don't know. I have literally been surviving one hour at a time for three years now. I am beyond exhausted, both mentally and physically. I know that this cannot last; living in this condition indefinitely is simply not an option…it is not sustainable. It must end one way or another, and preferably sooner rather than later. I'm honestly incredibly surprised and impressed with myself for making it as far as I have--for riding this bull for this long. I feel like this has been a 3-year-long rodeo and I've been clinging on to this raging animal with everything I've got, but it's going to buck me off at any moment. This will not end well.
I've been extremely close on two occasions now…notes were written and everything. I won't go into too much detail, but both times were 'saved' by holidays. Both times just happened to be in December, and I just couldn't bring myself to go through with it that close to xmas. I was so damn close though.
I guess there are a few things that have kept me going this long, even though it's a daily and often hourly tug-of-war for me. First off, people told me in the beginning, "It'll get better! You just have to stay strong and wait it out!" So I did. I've toughed this out for over three years now, only it hasn't gotten better. In fact some things (my legs, specifically) STILL continue to get worse. Unfortunately (as I've now learned), not all flox victims get their lives back, and I'm afraid I'm one of them. And at this point I just don't see it happening...I don't see any indication of a light being at the end of this incredibly long tunnel. I don't think I'm being pessimistic, I'm just being real. It's probably safe to assume at this point that this is permanent, and I'd likely be fooling myself to believe it's going to somehow start getting better this far out. I am not aware of any other type of injury that remains stagnant for a full three years before suddenly and miraculously beginning to heal. More often than not victims do indeed regain a good portion of their health back after being floxed; I, however, was evidently floxed beyond the dreaded point of no return…I am not one of the "lucky" ones.
Another reason I haven't offed myself--and I know this might sound stupid to some--is that I know they're going to autopsy my body once I do. I've researched online and apparently it's standard procedure for suicides/young deaths. My body has been through ENOUGH human-inflicted trauma as it is. Leave it the fuck alone!!! I realize I'll be dead and that it shouldn't matter at that point, but I actually have respect for my body unlike the outside world, and I don't want it hacked apart and toyed with any further! I've tried thinking up ways of just making myself "disappear" so that people can't get to me once I'm dead, but I haven't come up with anything realistic. The best option I've found is to be a suicide tourist in a country like Switzerland where physician-assisted suicide is currently legal (I figure they wouldn't need an autopsy afterwards since everything is clearly pre-arranged with the doctor), but it appears you have to suffer from a terminal illness in order to qualify. If I could have the earth just open up and swallow me, I would. I've truly had it with the human race and its unsolicited assault on my body.
Lastly, I know that killing myself would be EXACTLY what Bayer would want me to do. They'd love nothing more than for me to die silently in this room, fading into obscurity as they blaze ahead claiming more and more victims while continuing to profit every step of the way. Well I'm not going down that easily. They floxed the WRONG motherfucker. Part of me would also love nothing more than to go out in epic fashion at Bayer headquarters in an effort to make the news and hopefully get the word out about what they're doing, however A) my car is long gone B) I wouldn't be able to walk far once I got there and C) the media would likely just spin me as some lunatic and my message of warning would be lost. But boy, do I ever fantasize. I'd just like to say for the record that if I were ever to be placed in the same room as a Bayer exec, I'd deface him or her with my bare hands. And I mean literally de-face. I'd likely bust some tendons in the process, but it would be so worth it. An eye for an eye.
So those are the three main reasons I've clung on as long as I have. But as I said before, the condition I'm in is not sustainable and it must end one way or another. If it's not going to end through healing, then it's Plan B time. Whoever said "This too shall pass," "Suicide is a permanent solution to a temporary problem," and, "God never gives you more than you can handle" was obviously not severely floxed or suffering 24/7/365 from some other chronic or fatal condition. Some things do NOT pass, some things are NOT temporary, and some things ARE more than the human mind and body can handle.
I also have a real problem when I hear people say suicide is selfish. Sure there are instances where that can be true, but wanting to keep someone "alive" in a state of constant agony and incapacitation simply so that you don't have to mourn their physical death? THAT is selfish. Just because someone is breathing and has a pulse does not mean they are alive! Everything that constituted being alive, for me, came to an abrupt end on October 25th, 2009. My heart is still beating and my eyes still move, but my God I am not alive. Unless you've stared suicide in the face yourself, do not pretend to know what a person's mindset is at the moment they take their own life. I can't speak for anyone else, but I know for myself that when my pain level is off the charts and my muscles are literally tearing from my bones, there is no rational thinking going on in my head. NONE. I'm not sitting there calmly weighing the pros and cons of killing myself or thinking of what impact my death will have on the outside world. No--I'm in a near panic, my mind is racing for an exit, and I am hellbent on finding a way--ANY way--out. Nothing else exists in that moment, my thinking becomes very linear and my mission becomes incredibly clear: MUST GET OUT. When this happens I usually end up curling up in my bed, closing my eyes and forcing myself into a depression-induced sleep so that I can be unconscious. Sleep/unconsciousness is the next best thing to death, so I spend A LOT of time there. But at least I'm "still alive" for the sake of my family, right? Every time I wake up my heart drops in my chest as I'm immediately overcome with this wave of, "Oh shit--I'm still alive" followed by the realization that, "Fuck--I'm still in this crippled body." I cannot wait until I never have to experience that again. If a dog or cat was in this much pain, people would insist that it be put down--calling it 'cruel' and 'inhumane' not to. But when it's a human? Suddenly you're just supposed to grin and bear it until the bitter end. What's up with that?
Then there's the old line about suicide being "the easy way out." Are you fucking kidding me? Firstly, ending your own life goes completely againt our hard-wired human instinct to survive. There is NOTHING easy about ending a life you never wanted ended! In fact this is by far the most difficult and horrific thing I've ever been faced with. I don't WANT to die!!! I still had a ton of people to meet, places to go and things to do! But guess what? Bayer had different plans for me. They kicked my bucket list FOR me. I don't get to go to Australia now. I don't get to own my own house now. I don't get to own my own business now. Hell I don't even get to walk around the block! I have to deal with the reality of the situation I'm in here, and none of those things are going to happen for me at this point. I've swam in the ocean for the last time. I've bowled my last game. My gym pass has been scanned for the last time. It makes me sad to think of all the things I won't get to experience once I'm dead. All the songs I won't get to hear, all the changes in the world I won't get to witness. I'll never become old and bald and wrinkled which I guess could be seen as a good thing, but really…those old, bald, wrinkled people are the lucky ones. They've run through the gauntlet of life and survived. Me? I hit the invisible quicksand. I'd love to live long enough to see what a Playstation 10 looks like...but not like this.
I've tried to find ways to salvage what's left of me. If I could "simply" have my legs amputated and move on with my life using a prosthetics, I would! If I could go through life walking with crutches, I would! But neither of those options will work. This body Bayer has left me with is unsalvageable--it is beyond destroyed. Even if I had my legs amputated, I still wouldn't be able to walk because my hips are both bad. Hip replacements (and prosthetic legs, for that matter) are not an option because I wouldn't be able to complete any of the necessary rehabilitation work afterwards. I've looked into all of this, and you have to be able to hold yourself up using your upper body during rehab for either procedure, which I'd be unable to do. All of the joints and tendons in my upper body are just as damaged as the ones in my lower body, only it's not as apparent from day-to-day since they are not weight-bearing. Using my upper body to hold myself up (as with using crutches) MAKES them weight-bearing, which is horrifically painful and simply not possible (I attempted to use crutches once…what a mistake). Same thing goes with wheeling myself around in a wheelchair--I physically cannot do it. So if my body is not going to heal itself, and it is not salvageable though any other means, then I'm really out of options here. It'd be one thing if I was just bedridden without the pain. I could handle that. It would be another thing if I just had the pain without being bedridden. I could likely handle that too (although not if my muscles were still ripping from the bone...that's a deal breaker). Put it all together though--constant horrific pain AND being bedridden--and there's just nothing left of me. It's too much.
I need to make one thing VERY clear: When I do succumb to this, it was BAYER that killed me. My death will be a direct result of their having poisoned me. People will want to call my death a suicide…NO! Bayer "Healthcare" is 100% directly responsible for my untimely death. Don't ever get that twisted!
Lastly, I do not want any sort of funeral whatsoever. Burn what's left of my body or bury me in the ground (surprise me) and move on as if nothing ever happened. Carrying on shouldn't be difficult, as no one's had any problem doing it over the past three years so why should anything be different once my heart stops beating? To the people who knew me in person: If you weren't around when I had a pulse and was battling this beast, do not suddenly come out of the woodwork when I'm flatlined. None of that bullshit. The only thing I want from anyone is to please keep this website up and running for as long as humanly possible in one form or another. I have pre-paid my domain name for the next 10 years (the maximum allowed) so hopefully people will still be stumbling upon my warnings from beyond the grave in the year 2022 (God help us if this shit is STILL happening in 2022). If anyone out there knows how to clone a website and keep it stored as a backup in case this site for some reason goes down, I would appreciate it. Like I said before, Bayer would love nothing more than for me to die silently and fade into obscurity, taking with me all the evidence of what they did to me. Well they're not going to get that if I can help it.
But you don't have to take my word for it! Take it from a floxed physician...
"Fluoroquinolones can cause a severe reaction that hasn't been fully appreciated by the medical community. I am a physician and I know how ignorant we are with regards to the side effects. The FDA warning doesn't take a strong stand against the side effects and fails to mention that Fluoroquinolones lead to a SYNDROME with many side effects. To believe this class of medications causes one or another side effect is completely irresponsible of the FDA. As a physician and as someone that is suffering the Fluoroquinlone syndrome/toxicity, I beg the FDA to limit the use of Fluoroquinolones to life and death situations, and to recognize that Fluoroquinolones can lead to a syndrome that can last months if not years. If it wasn't for my vacation and sick leave days, and the kindness and understanding of my empoyer, I would be out of a job! Yes, a Physician at age 43 out of a job and on disability. This is proposterous to say the least. The FDA must take the sufferers seriously. Prior to this toxicity, I was a healthy, physically active person. I had NO medical history. For God's sake, I had never taken any meds except a few Motrins and Tylenols here and there. This medication has completely made my life miserable. I feel like a 300 year old person. Please, I beg the FDA to take a moral and ethical stand above monetary gains, and limit the use of these meds, and to better inform the public of the syndrome that may arise, and believe me, as a sufferer, the symptoms aren't your garden variety symptoms. THEY ARE FROM HELL!" --posted to askapatient.com on 4/8/12
THE HALL OF SHAME: Dr. Nisha J. Manek of the Mayo Clinic, Rochester
Six months into this nightmare I made the 10-hour drive--with arthritic hands and no car insurance--to the Mayo Clinic in Rochester, MN where I was assigned to Dr. Nisha J. Manek. What a waste. Dr. Manek was 20 minutes late to my 1-hour appointment and then refused to even consider the fact that Cipro had harmed me saying, "Cipro doesn't do this to people your age--you're too young." It was as if someone had gotten her entire education re: Cipro from reading word-for-word off the drug's warning label! This certainly wouldn't be the first time, but I expected more from a Mayo Clinic doctor. Now let's use our brains here: If Cipro only harms older people, then why is it forbidden for use in patients under the age of 18?? I'll tell you why: Because it destroys the development of their connective tissues! When I mentioned to Dr. Manek that I'm in contact with countless flox victims online who are my age and younger, I was quickly steamrolled over and told not to talk about things I read on the internet. Then when my test results came back unable to explain what's wrong with me (as is very often the case with flox victims) she looked at me and literally laughed saying, "What are you doing in this wheelchair!?" She then recommended I see a psych doctor, essentially insinuating that I'm crazy or that this is all in my head. Hey Dr. Manek? Perhaps you missed THIS ARTICLE published by your very own colleagues (probably in the next room over!) about the horrific side effects of FQ antibiotics. Please--educate yourself so that the next time a flox victim lands in your office desperate for help you won't be quite so ignorant, close-minded, condescending, unhelpful and offensive! Your ignorance cost me both my time and money--please don't let it happen again to another person in my situation. Talk to your colleagues who obviously know a thing or two about these drugs. And in the meantime, welcome to the Hall of Shame!
<Return To Homepage