Michael K’s Story

Levaquin damaged my Mitochondria and Autonomic Nervous System causing significant issue across most of my organs and systems and unspeakable pain that lasts to this day. My list of concurrent symptoms covers most of my major systems and is far too long to list here. After the initial reaction, my issues quickly progressed to my being predominantly bed-ridden for the first 18 mos. 6 months of which my body was usually too weak to produce a voice or move my limbs, or even go to the bathroom. 7 years later, I am in layers of pain – pain that goes far beyond anything a ‘normal’ human being has ever had to endure. I am still like a defective battery that discharges too fast and does not recharge correctly, if at all. As my ‘batteries’ drain, my long list of symptoms (across multiple systems) intensifies dramatically. My brain slows (further) and I’m more confused. My body becomes heavier and weaker. Vision becomes even more doubled and blurred. The pain increases dramatically. My severe deficit in cellular energy has a dramatic and horrific effect, causing progressive dysfunction in my most energy-dependent organs, processes and systems. Most notably (but not limited to) my brain, eyes, heart and all muscle groups.

My story:
Before Levaquin hijacked my life, I was a very active and fit 34yo man. My workout routine included 50-90 mins of intense cardio(daily) in the morning and I would lift weights 90+ mins in the afternoon 5 times per week. I was a new father, my son was 15 mos old when life as I knew it ended. His first word was Dada, two short months later his Dada became an uncommunicative, immobile, unrecognizable shell of a man.

In late Sept 2008 I was prescribed Levaquin for a minor cold, “just in case”, a few days before a simple sinus surgery. I did not want an antibiotic as it was just a minor, simple chest cold. But I trusted the Doctor. After all, that’s what we’re taught to do. I did take the time to read the information included in my prescription. At that time in 2008 the only warning was that “in rare cases tendon damage may occur – mainly in the elderly”. We all now know that to be an outright lie.

Within the first few doses I noticed I was very detached from my body and my life. It was like I was living in a movie or a dream of some sort. I was on auto-pilot going through the motions of the day, but felt completely severed from the presence of it. My thinking was much slower and I was having a rough time processing things. Meetings, easy questions my co-workers would ask. No matter how hard I tried, I just couldn’t seem to follow conversations. The simple surgery went as planned without issue, and afterwards I was directed to resume and continue my course of Levaquin, which I did. Once I returned to work after surgery my body was noticeably heavier and slower and my cognitive issues were more pronounced. I thought maybe I was still recovering and just needed to try harder. But perceptually, I was a hot mess.

On Monday, 6 October 2008, I woke up unable to feel my legs. I didn’t realize it yet, but a nuclear bomb had just gone off in my body. By the end of that week there were so many system-wide symptoms developing and progressing. I was becoming weak, frail and walking seemed nearly impossible most times and I was in a wheelchair by Thursday. That day, the prescribing Doctor hung up on me after I reported my symptoms. By the weekend I was in Neurological Intensive Care.

While always present and affecting me, some days my growing list of symptoms would be improved slightly during the early part of the day (when my cellular energy levels were at the peak) and I didn’t have as much difficulty moving my body and the pain was slightly improved. I had a marginally easier time using my words. Most standard tests came back normal (another challenge of mitochondrial disorders), including an initial nerve test. Between what seemed to be waxing/waning of weakness and symptoms (characteristic of mitochondrial disorders) and basic testing showing nothing, I was told this was a panic attack and discharged on the 4th day. In less than an hour I went from the ICU to the parking lot. I felt humiliated in front of my family. I didn’t understand. This became representative of the type of results I would get from most Doctors over the next couple of years. Mitochondrial disorders – and the presentation of symptoms – are far beyond the scope of knowledge of even the most specialized Doctors. My mind was/is heavily affected as well, certainly I was not going to tell any Doctor of my cognitive issues as they already seemed to think it was in my head. But I had a hard time understanding my symptoms myself and due to the worsening cognitive trouble, I was not able to explain my issues well or communicate effectively. I simply could not use my words to describe most of it and there was just too many symptoms happening at the same time in too many systems in my body.

By Christmas 2008 (month 3), my list of symptoms had dramatically increased to include seemingly all of my major organ systems. Most notably my Heart, Brain (cognitive), eyes and all muscle groups. My “bad days” would include entire-body weakness such that I was unable to hold my head up, swallow or chew food, speak without immediate and intense pain in my heart, layers of pain not of this Earth, slowness of thinking/processing/understanding, doubled and blurred vision, difficulty breathing and many other issues.
On my “good days” I would get small, short bursts of energy giving me very limited communication and functionality. But I would instantly become frail once I had used that energy supply – most times that was just a few minutes of any activity. Once I “hit the wall” as I now call it, my “good day” would immediately become exactly like my “bad days” and what I call my “baseline” would be significantly lowered.

Soon it would progress further and by April 2009 I would be consistently too weak and frail to move at all and I became entirely bedridden, confined to an over-sized chair at the back of our house – for a very long time. No more “good days”.

It would be years of continuous pain, struggle and shame until I was diagnosed with Mitochondrial damage, which explains all of my symptoms and their confusing patterns. Mitochondria are the powerhouse of each of our cells and Mitochondria are responsible for over 90% of the energy needed by the body to sustain life.

While I have fought hard to have made some improvements over the last 7 years, I am hardly what any sane person would consider ‘functional’. I can usually stand when I want to now, I can even walk from one side of the house to the other before I feel my batteries drain. On my good days I can walk short distances or even make a short trip to the grocery store. But I can’t do it twice. The physical toll is sizable, and once I spend energy I don’t get it back which generally means there’s not enough energy left in my cells to correctly run my organs and systems. Still, I get weak quickly and I am/have been in layers of intense pain beyond description or imagination – every second of every day for the last 2,555 days. I still cannot reliably care for myself and I count heavily on my wife to ensure I’m fed, have clothes to wear, explain situations/translate the world for me, etc. My world must now be very predictable and slow for me to have even a chance at understanding. I have taught myself to administer my own IV’s to help reduce the intensity of some of the painful symptoms and I have been forced to learn to be very economical with my energy budget. I am still largely housebound and I do not have enough strength or stamina to go on most family outings, no matter how short they may be. As a result, I have witnessed my young son experience the world through pictures that they take for Daddy. This is not a life. This is a tortuous prison filled with shame, guilt, struggle, heartbreak and agonizing pain from which there is no escape and for which there is no help.

Thank you for taking the time to read. I can only hope justice will be served and no more innocent lives destroyed by the unchecked greed of the Pharmaceutical industry. I was given this drug for a cough and it has so far nearly cost me my life. I wish I kept the cough.

Michael K