Live long enough to warn others… check.

I have been having a very rough time, more so than usual, these last 4-5 months. Especially the last 6-8 weeks, I have been locked in my shell again and communicating has been more difficult.

It is with a grateful yet heavy heart that I post this.

For years I had no idea what was happening to me (or what caused it) and my Doctors were equally as confused. I had issues and symptoms in so many systems at the same time and worse still, my mind was so heavily affected that I couldn’t understand, much less relay what was happening to me. In the early years, I held tightly onto the hope that I’d at least live long enough to tell my story and warn others. That time has finally come. On 30 March, CBS Denver aired my story.

I fought hard to make it to this moment, and to me it means more than I can say. I made it to a milestone, and I made it further than I ever thought I would. For over 6.5 years now I have lived with the understanding that I may not live until morning or that best case, I may never recover enough to speak intelligently about what is happening to me and/or get the help I desperately need. But with a lot of help, I did it. 

Both Nikki and my mother helped me prepare by role-playing which allowed me to practice getting some of the words out. I’m still in here somewhere, my intellect is mostly intact – albeit slow when my batteries drain lower. But I get lost easily and my brain seems to run out of power just like the rest of my body does. I had to use cue cards to keep myself on track and even then at times I still became confused when the reporter would ask questions. I liken my brain issues (some of them) to trying to watch a youtube video on dial-up. I know what I am trying to say and I start talking, but soon I reach the end of the buffered part of the video and it gets all choppy and stops. Or like someone is turning the sheet music too fast and I just draw a blank.

I knew there would be no way to convey the entire story of what these drugs can do to a human being – or what they’ve done to me. Very few of my issues/symptoms were covered in the interview, but I knew going into it that I’d only have 60 seconds or so to cover a tremendous amount of issues – that after 6.5 years I still don’t know how to summarize effectively. I’m grateful to have gotten as much out as I had, and I’m equally grateful that Kathy Walsh was so gentle and understanding. She took her time and didn’t rush me, her patience was and is deeply appreciated.

One of the questions she asked was “Do you think you’ve lost your ‘fight’?”… That’s where you see me choke up a little. A perfectly appropriate question I suppose, but it totally blind-sided me, I felt somewhat incensed by the implication that I’ve lost my “fight”. I’ve been through far too much torture, more than I’ll likely ever have words for. I will never lose my “fight”… I may lose the fight, but never my inner fight. My inner fight is the only thing I have control over anymore.  I’m a father now, my life no longer belongs to me. I fight for my son and I will never let him down.

I cannot thank Kathy Walsh and CBS enough for helping to get the word out and warn as many other as we can. It’s been my experience (echoed by many others) that most in positions of power do not want to discuss what a multi-billion dollar per year drug class actually does. It’s a minefield that few will step into. That includes Doctors, Politicians and I assumed media as well. Luckily the time has come for the truth to be told. Thank you Kathy and CBS for your efforts in warning the public about the serious dangers of this class of drugs.

My life has been hijacked by this drug. Coming up on 7 years later and I’m still battling intense progressive entire-body weakness, multi-system issues and an unimaginable amount of pain. I am a small fraction of the man I was before Levaquin.

Warning the public and educating prescribing/treating physicians is top priority. It is my hope that the exposure across the nation recently will save many lives. Thank you to all who have had the courage to come forward to tell their stories.

Your Brother in Fight,

Denver Levaquin Story


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