Bittersweet Validation: Thoughts on my Muscle Biopsy
“The chances of the biopsy showing anything are pretty low, if at all,” the neurologist said to me as he walked out the door. I looked unknowingly at my wife as his words caused me to briefly reflect on the history that brought me here.
My symptoms started in 2007 after taking 750 mgs of Levaquin for 21 days. No, I did not have a shotgun reaction where all the symptoms come on at once, but instead my symptoms all came on slowly. But, looking back, the contrasting before and after Levaquin could not be more stark:
Before and After
Before Levaquin: I had a career in law enforcement and I was physically large and very active. At 6’ 4” and 243 lbs I would bicycle, on average, 7 -10 miles a days, and bench press 300 lbs. And no, I wasn’t some muscle-bound knucklehead either. My I.Q. ranged everywhere from 145 to 160 depending on which test (Stanford–Binet through Raven’s Matrices) and I had completed two college degrees in disparate fields. The worst health problem I experienced was the occasional knee problem, from and old track injury in high school, and GERD, from drinking too much coffee at work.
After Levaquin: Tendinitis, tendinosis, small fiber neuropathy, mild denervation of distal muscles, two heart attacks (yes two), gastroparesis, chronic fatigue, and mitochondrial dysfunction. These are the main diagnoses and does not include the numerous other small issues that affect us post floxing.
Big difference, isn’t it? Even the heart issues I know were caused by Levaquin. You could be thinking that I could have had heart disease brought about by lifestyle or genetics not brought on by the Levaquin, but for the most part, you would be wrong. You see, prior to my floxing, I was provably healthy. I did not drink, smoke, or engage in otherwise naughty health habits. Arguably, you may have found me a bit boring (not that I didn’t engage in a bit of revelry in my younger days) but I could readily attest that I was not diabetic, I ate healthy, and like I mentioned above had a routine exercise schedule.
In addition, four years before my floxing I had a nuclear cardio stress test and heart scan, because I wanted to increase my high intensity workouts. Being in my early forties, my doctor wanted me to have the test to rule out any abnormalities, such as arterial heart blockages (remember Jim Fixx) before I increased my high intensity workouts. The result was a clean bill of health, when it came to my cardio system, but I digress.
I have had the blessing of having two excellent primary care physicians over the last decade, with the first one being spectacular (no, he was not the one who floxed me, that was a urologist). The second primary care, and also my current one, is not completely ‘on board’ with the fluoroquinolone toxicity, but he agrees that in my case I was delivered a “one – two punch” where the Levaquin initiated some very unpleasant problems in my body.
Back to Neurology
Despite fasciculations, muscle fatigue, mild atrophy, and neuropathy, numerous EMG’s and NCV tests showed no abnormalities. That changed somewhat in 2010 when my neurologist, frustrated he could not find anything, sent me to the University of Chicago’s Peripheral Neuropathy clinic. Again my EMG & NCV came back negative, as did any other tests with reasons for my symptoms, except for one. They performed a nerve punch biopsy on my right thigh and ankle. Sent off to a lab called Therapath in New York, the results came back abnormal.
The nerve biopsy detected ‘significantly reduced small nerve fibers’ and they gave me diagnosis of peripheral neuropathy (polyneuropathy). Interestingly enough, the pathology on the tissue showed no amyloid deposits or micro-inflammation. One of the neurologists who did the nerve punch said the damage was indicative of a toxic exposure, such as seen with heavy metals, yet all my testing showed no exposure. Despite my suggestions and even protestations, no one at the University of Chicago would even entertain the idea that Levaquin caused this damage.
My symptoms continued to progress with severe gastrointestinal problems manifesting and the diagnosis of Gastroparesis.
In 2013 a repeat EMG at my neurologist’s office started showing some subtle changes to my nervous system. Their EMG showed mild to moderate denervation of my distal muscles. During a follow up appointment to discuss the EMG findings, the specter of mitochondrial problems was brought up in the conversation and my neurologist suggested that I see a mitochondrial specialist. Even he was puzzled due to my previously robust health. My primary care agreed on the suggestion based on my symptoms, but unfortunately my insurance company denied the referral, so I was left to work within my local system.
My primary care then referred me to the Illinois Neurological Institute (INI), located in Peoria Illinois, and covered by my insurance. There I saw a neurologist who specialized in muscular dystrophy. I saw this neurologist several times before the option of a muscle biopsy was discussed. This neurologist was skeptical of most of my suggestions and in general was skeptical that mitochondria problems could be behind the health problems I was experiencing. To me it was obvious, but to him, since I exhibited no signs of large motor problems commonly seen in neuromuscular pathologies, I was a puzzle.
The muscle biopsy that we discussed would be an invasive procedure. It would be a deep open biopsy of vastus intermedius muscle of the left leg. The procedure involve about a three inch incision where they would harvest about an inch-long strand of deep muscle fibers. The neurologist reiterated that because I did not have an elevated CPK, the likelihood of my muscle biopsy showing any abnormality was very slim.
Sources of Information
It was then I reached out to the United Mitochondrial Disease Foundation (UMDF), Mito Action, and the Mitochondrial Medicine Society (MitoSoc). I was told by the UMDF that this biopsy holds the greatest promise for detecting mitochondrial problems over needle or punch biopsies. I shared this information with my neurologist who again said that it more than likely would come back negative, so be prepared for the possibility.
The UMDF told me that an elevated CPK was not necessary to capture mitochondrial problems. I shared my concerns with my general practitioner told me that the neurologist, who has his expertise in muscular dystrophy, was viewing my case through the filter of his experience. Admittedly, my neurologist said that they do not see many mito cases (even though most neuromuscular disease are indeed mitochondrial based).
After several months of deliberation, mainly over fears of how I would tolerate the procedure, I decided to go ahead with the biopsy. Oddly, my insurance company factored into the decision. They repeatedly denied my doctor’s request for genetic testing calling it ‘experimental’ and cost prohibitive. Ironically, the muscle biopsy was going to cost much, much more than the genetic testing.
I had quite a bit of anxiety about the procedure since I do not metabolize drugs well since floxing, but I went ahead with the procedure on February 7th, 2017, a deep open muscle biopsy of the left vastus intermedius. I tolerated the procedure fairly good and was told that it would take several weeks to analyze the tissue.
The week before the procedure I am sure I became an annoyance to the neurosurgeon’s nurse. I wanted to make sure that they performed the correct testing on the muscle tissue so I forwarded them lists of tests taken from the UMDF and MitoSoc websites and pestered them until I was sure that the pathologist was on the same page.
Finding a Culprit: Bittersweet Validation
After several weeks, I was contacted by my neurologist’s nurse who said the pathologist found some abnormalities. The pathologist said they did not find any red ragged fibers normally scene in mitochondrial disease but they did find cytochrome oxidase negative fibers which are indicative of mitochondrial dysfunction often seen in mutated or damaged mitochondria. They also found a few fibers with increased succinate dehydrogenase staining. They recommend the muscle tissue get sent off to a University lab for more in-depth testing which will take about 8 weeks.
Since then I have been researching the findings. I do know we are on the right track as the findings do explain my symptoms. We just need to dig a little further in the genome and the mitochondrial metabolism to uncover some more answers.
After so many unremarkable tests, and so many years, some of the bigger pieces of the puzzle for me are starting to fall into place. One floxy friend told me that the results must be ‘bittersweet validation’. I guess that would be a good way of putting it.
If another floxy undergoes this type of procedure looking for answers, I would be interested in hearing their results and experiences.