One of the most widely prescribed (over-prescribed) antibiotics – LEVAQUIN – damaged my Mitochondria,Autonomic and Central Nervous Systems.
Note: I have glossed over a lot of my last 6 years in order to make this as concise and readable as possible. Here’s a basic overview…
I was a good man, and I was working very hard to become a great father and provide for my new family. We lived in a house that we loved and that I was trying to rehab.
I was a Senior Network Engineer with a great and a very large Non-Profit with a presence in nearly every country and community on the planet. My scope of work was Global Data Security, Global Data Storage (SAN), Global Email and Global Web Infrastructure and Security, as well as Global Network Design and implementation. I absolutely loved working there, it was a very relaxed atmosphere compared to the hectic pace of the client sites I was used to as a Consultant for so many years.
I had a good Career. I was working out nearly every day, I was eating a clean and very healthy diet. I was on track to provide a secure life for my family.
15 September 2008 I was prescribed Levaquin, over the phone, for a cough. I was to have surgery on 17 September, and this prescription was “just in case”. I did take the time to read the information included in my prescription. And in 2008, the only reaction listed was that in rare cases tendon damage may occur – mainly in the elderly. What a lie… Soon after my first dose 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. I just couldn’t seem to follow conversations. Once I returned to work after surgery this was even more noticeable, but thought maybe I was just 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 know it yet, but a Nuclear Pharma-bomb that targets DNA 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 symptoms would be improved slightly during the early part of the day and I didn’t have as much difficulty moving my body and the pain wasn’t as intense. Most standard tests came back normal (another challenge of mitochondrial disorders), including an initial nerve test. Between what seemed to be waxing/waning of symptoms (characteristic of mitochondrial disorders) and basic testing showing nothing, I was told this was a panic attack.
They sent their Psychologist to my room who found me to be perfectly sane and found no reason to believe any of this was in my head. Both his opinion and my insistence that something is very wrong with me did me no good and I was discharged on the 4th day. In less than an hour I went from 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 from that point forward. Mitochondrial disorders – and the symptoms – are well beyond the scope of knowledge of most Doctors. And to be fair, my mind was/is heavily affected as well. Certainly I was not going to tell any Doctor of my cognitive issues, 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 myself very well. I simply had no words to describe most of it and there was just too many symptoms happening at the same time.
One night in mid-November (month 2), I had what felt like a mini-seizure. I was in the wheelchair on my way to the bedroom. All of the sudden I was freezing cold. I made it to bed and within a few minutes I was on my side in a fetal position shaking uncontrollably. I was freezing cold, but sweating profusely all over my body. I don’t mean cold sweats. I mean I literally soaked through my clothes. The pillow and bed were wet and my hair was soaked. This was not mild, this was an intense experience.
I had a lot of additional symptoms develop after that night.
By Christmas 2008, 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, 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. My list of daily symptoms can be found here.
On my “good days” I would get small, short bursts of energy some days 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. This means that all of my symptoms and weakness becomes far more intense. But at first I couldn’t understand the pattern(s), it confused me. To me, this made no sense and I thought maybe I was crazy.
It wouldn’t noticeably improve overnight; improvements would be slight and noticed over days or weeks while my ‘batteries’ recharged. But it sure as hell gets worse in an instant, there are many factors that will affect my baseline, stress and/or anger is also one of them. Below is an excerpt from one of my “scraps of paper” where I wrote my fragmented thoughts over the years.
It was about mid-November (month 2-ish) or so where I felt the effects of stress and/or anger for the first time. I was in a slight upswing in symptom intensity and was able to walk short distances. Nikki and I went for breakfast and when we came home, I remember getting angry about something. Instantly, all the improvements I had were gone, many new sensations appeared and I felt the electrical pain for the first time. In literally less than a second, my entire body was on fire with intense electrical pain – face included. I started to shake and quickly became weak. I was able to make it from the car to the back room near the garage that would later become my prison. Whatever was happening to my body because of that burst of anger was getting worse. The shaking and intense electrical pain lasted for days, but the weakness and worsening of symptoms that it caused lasted much longer. This was yet another thing to the Doctors credit I thought. Stress and/or anger makes it worse??? No way, now that sounds like something that’s in my head and since it seemed to affect all my symptoms, my logical brain thought maybe almost all were in my head too? The Doctors must be at least a little right I thought. It all just sounded crazy to me.
This is where the mental warfare really began I think. It would get much worse in coming months and years, but this is where it began. I was struggling to believe myself, and to the Doctors credit, this was making less and less sense to what little mind I had left. I mean, something that severe doesn’t just improve for no reason, right? I mean, if it’s really affecting me that much, it should always be reasonably close the same intensity right? If I need a wheelchair all day today, I should reasonably expect to require one all day tomorrow. But that’s not how it went. At least at first.
It would be years 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.
I had been to multiple specialists, including the Mayo Clinic. There they found the Autonomic Nervous System damage. They all but refused to believe anyone could have a list of symptoms this long, in so many different systems. When I showed him a partial list of symptoms I wrote (much shorter than the one posted here) the head Internist – the self-proclaimed “Dr House” – of Mayo said “Mr. Kaferly, if you actually had all of these symptoms I’d be looking at a corpse right now” and he encouraged me to “separate the wheat from the chaff” to narrow my list down to something reasonable. They too suggested at least some of this was in my head. I agreed to see the psychologists at Mayo who, like the others, found me to be perfectly sane and found that absolutely none of this was in my head.
Its been my experience that if you come to a Doctor with symptoms that they don’t recognize, you’re almost immediately labeled as crazy. I’ve also come to find out that my experience is not unique, unfortunately many have walked in my shoes.
Soon the weakness and symptom intensity would progress further and by April 2009 I would be consistently too weak and frail to move at all and I became bedridden, confined to an over-sized chair at the back of our house – for a very long time. No more “good days”.
For the first 18 mos I was mostly bedridden, but I would at least get some fluctuation in baseline allowing for good days from time to time. But from April to September 2009, I would not experience any appreciable bursts of energy nor would I get any “good days”. Most often I was entirely unable to communicate. Not only because of the severe cognitive issues, but also because I lost my ability to produce a voice. I was too weak. This video was taken toward the end of my time in the chair, in August 2009. This represents a good day in that I was able to speak and record, but is also very representative of what I mean when I say my ‘batteries are drained’…
We have had to boost the audio in this clip as my voice was so soft.
I was told I had Autonomic Nervous System damage at Mayo and that it would do all sorts of crazy things to me. But that didn’t explain the weakness. It couldn’t have been nerve related I thought – I can wiggle my toes! I can move my limbs slightly at least. So why can’t I move out of this chair and go to where my family is? Why am I stuck in this prison? There was more to it than just ANS damage, there had to be. But I didn’t understand it myself either. There were too many things happening at once for me to understand with the mind I had at the time. This was and is a hell unlike anything I could have possibly imagined. Death would have been an enormous gift.
By October I was starting to get some periods of improvement. It didn’t allow me to do much more than I did when I was bedridden and my energy would drain very fast. But I could at least move to another spot to rest. By November 2009, we lost our house to foreclosure, our car was repossessed. I was hardly functional and I just couldn’t understand what was happening.
In early 2010 I got my first IV of Glutathione. The Dr I saw was hardly knowledgeable and I had no trust in him, but not many Dr’s perform Glutathione IV’s so there weren’t many options. While the Glutathione was amazing, almost miraculous at first, I soon started to urinate a lot of blood immediately after his treatments. Between the unpredictable amounts of energy I’d have making it hard to make/keep appointments, the cost of the IV’s ($150-$175 each) and the complete lack of trust in the medical system I’ve since developed – if I wanted to have any chance at all of beating this monster the only way was to teach myself to perform my own IV’s. The cost is about 1/3 and I can have it whenever I need it. The problem was that I was terrified of needles and my vision was/is doubled and blurry – although Glutathione helped with that too.
If properly motivated, you’ll be amazed at what you can accomplish. I was a new father when this happened, and I was missing my sons life. I made the only choice available.
The Glutathione helped to combat what we now know to be mitochondrial issues and allow me notably better levels of functionality and longer periods of energy before I “hit the wall”. So much so that I thought I might try physical rehab. That only lasted a few days (or maybe a week) as I developed a incarcerated double hernia in my sleep one night after doing leg lifts in rehab. My muscles were not only weak, but they seem to get hurt easily.
In the summer of 2010, I saw an amazing Neurologist who listened and really cared. He let me take my time as I stumbled through the conversation, fighting my cognitive issues. I got a prescription for Glutathione and had it sent to the compounding pharmacy. Finally I could get my spinich!
After a lot of trial and error (heavy on the error part), Nikki and I were finally successful in administering my first IV. Her job was to screw the syringe to the end of the IV needle – and not throw up. It immediately helped me in a way I considered a miracle at the time. It was a night and day difference. I’d still hit the wall hard every day and end up similar to what’s seen in the video above, but it gave me a little bit of life back for a few hours. I got to spend time with my son and be mentally present somewhat, which until that point hadn’t really happened since I got poisoned. I didn’t want Nikki to have to go through this process anymore, so I learned to do it on my own.
I recorded videos of my first attempt alone to share. I posted them in 2013, found here. In the fall of 2010 we moved to Boulder in search of a healthier life and a more quiet, slower pace. Soon I had a home Nurse which really helped me stay on track. My baseline would fluctuate from severe to completely incapacitated like I was in the video above but once I was able to get my IV’s consistently, I would start to have better days where I was strong again for a few hours (until I hit the wall). And my baseline was improving slightly but steadily it seemed. This is when I was finally able to start making a little sense of what was happening to me. I finally had some of the layers of pain subside enough to identify the different sensations I was feeling. Until then, it was always too many things at once – too many different layers of pain all over the body and strange sensations everywhere. Some of the various symptoms would improve at slightly different rates, which allowed me to finally start to understand cause and effect. I now started to understand the patterns.
In mid 2011 I was diagnosed with Mitochondrial dysfunction. Excellent! Now I knew it’s name. And even better, I finally had a diagnoses that actually explained all of my symptoms and the patterns/cycles. It even explained the issues across all the different systems that I was experiencing and most of all, it explained why all symptoms worsen or improve as a group. Finally, root cause!! I had felt crazy for so many years, that even though this was very bad news I was truly grateful.
I expected that now I could just tell a Dr – any Dr – that’s what I have and they’ll just understand. That’s not the case.
Up until this time my average daily baseline still included intense heart pain upon exertion and even speaking once my batteries drained low enough each day. And especially after I hit the wall. But that was something that happened all day every day. At least my low baseline (how bad it gets) was improving. Small win, but a win none-the-less.
One of the Doctors here taught me to manage my energy budget, which has helped me keep from draining my batteries as low as seen in my video. This has helped to stabilize my baseline more than it had been at least.
But it’s now 2015 and I still have all the same issues. I am still largely unable to actively participate in my sons life – or even my own. I am still completely dependent on Nikki to facilitate the world around me. I still weaken very quickly and for the last 3 years my focus has been more on surviving another day, more than it has been on healing.
We have completely exhausted all funds on treatments and care and for the last 3 years I’ve been forced to go without the care or most of the treatments I require and this has caused a substantial degradation of my condition. Almost none of the known treatments for mitochondrial disorder are covered by insurance. We can’t even reliably afford the type of food I now require, or utilities even. But I fight hard, every day.