Lyme Disease — Progressive Disintegration
December 23, 2010 By
I was born and raised in NYC.
In the early 90’s, my girlfriend and I moved to Branford, CT. I know, I know, Connecticut’s reputation for Lyme is legendary – actually named after the small town, Lyme, in the north-east part of the state. Well I loved biking, loved Connecticut, and checked thoroughly for ticks after each ride.
Sports were always easy. I was stronger, faster and angrier than my friends, which, when accompanied by extremely low self-esteem, made me fierce in competition. As an adult, I see clearly that the daily workout (beating), with my 6’5″ 260 lb, angry, angry-brother, played role in my athletic development.
And it was my brother, Paul, who first introduced me to Mountain Biking in 1983. He had returned from a summer-long tour of Europe (on bike) strong as hell and ready for off-road adventures with his (foolish) brother. We loaded his GTI with our now-vintage Specialized and Giant mountain bikes with sights on the South Mountain Reservation, in Millburn, NJ. He spanked me, over and over… and over and over. All day, on each climb, turn, descent. Broken and brused, I vowed that I would someday have my revenge.
So I started training with a vengeance, resentment and, possibly, a wee-amount of OCD.
My Giant led me to victory in my first beginner MTB race. Some upgrades, more training, and I managed a 2nd in Sport, and 3rd in Expert a few months later. I settled into the NORBA Pro-Eite category at the beginning of my 2nd season. I felt like the Bionic-Man! Even chanted the sound to myself when passing riders (ba-na-na-na-na-na-na). I never needed a day-off to recover, never bonked, and ran between 6-20 miles every morning – including race-day’s.
How could it be any other way?
I moved to Pittsburgh for Graduate School in 1995, and was fast there, too. I started a bike shop, assembled some riders, and worked as a messenger for fun and money.
A typical day:
120-160 miles running parcels between ordering/selling product and doing homework. Criterium or MTB races/rides after work and on weekends. Still, never tired, a bit hyper, and consistently strong on the bike.
Year #2 in Pittsburgh, my mother was diagnosed with Pancreatic Cancer. I returned to CT to see her and race the World Cup @ Mt. Snow.
It was during my pre-race ride that I was bit by that fucking black-fly. My chest swelled, and there was the stupid “bulls-eye”. Thought it was an allergic reaction.
I was lapped at Mt. Snow race, and “DNF” from knee-pain. Back in Pittsburgh, I was unable to ride or run. Walking was tolerable, but only with ibuprophen. Hard to describe the pain – it was like all the tissue under my kneecaps was pureed, inflamed, clicking, and unable to hold my femur and tibia in harmony.
Back in PA I experienced difficulty walking, concentrating, waking-up in the AM, and feeling motivated to do anything.
Not once during my two-years without bike or run did I consider my reaction to the fly-bite.
Instead, I diagnosed myself “Clinically-Depressed”. No need for an outside consultation, I was miles-ahead of my fellow PhD candidates, certain that my studies in Psychiatric and Alcohol Epidemiology made the case.
Ignorant.
You see, my mom died around the same time as my knee-problem. It was the only reasonable explanation.
I started regular visits with a psychologist who agreed. She recommended that I see a “healer” for my knees, and that I start swimming. So I swam and saw the healer, who, after a few very-painful sessions, removed my knee pain (mostly).
It was back on the bike. No pain in the knees, but hurting everywhere else. And, of course, no power, no endurance, and very whiny about the whole thing. It was the end of the world, as far as I was concerned. Who am I, if not a tremendous athlete?
My friends pushed me to continue, assuring that I would be strong again. What I could not grasp is my lack of training effect and recovery – I was 28 years-old, and my life was over. Now, really depressed. Way-stinky compared to what I had formerly thought was depression. I remembered a conversation I overheard about suicide: “How do you know that it will be better on the other side?” Thanks, I thought.
So I decided to embrace drugs. Not a good idea. Ten-years recovery gone, and in fourteen-months, everything else along with it.
I moved to Minneapolis in the late 90’s, and started riding again. I must have really missed it, because I felt good. Sure, the excessive-dosing on ibuprophen and caffeine helped, but they were only a temporary crutch.
My first summer I decided to teach these flat-lander’s how to race. Figured Expert class was sufficient to ensure good placement, and headed out to Buck to make my mark. My energizer bunny died that day. Mid-to back of the pack finish! What the hell are these Norwegians on? Are they genetically superior? Couldn’t be me, right?
I am a stubborn-man (OCD?), so it took a few years for me to admit that there would be no second-coming.
In 2003 I started to have difficulty pedaling with my left leg. It was weak and my knee tracked horribly. I visited two of the best fitters in the world without improvement. My power was fading, back hurt 24/7, and my left hip, knee and foot were no longer following direction.
My riding came to a halt in 2007, after numerous self-prescribed-fit-modifications (including copious amounts of duct-tape applied to back, ribs, hips) failed to keep me from teetering off the right side of my bike.
My friends could not understand what the problem was. I looked good, and was still reasonably fast on a bike. What they did not know is how I felt inside, during and after riding, how many supplements and anti-inflammatory drugs I needed to keep going, that I slept 10-14hrs every night and was tired all the time.
Lyme Disease
December 23, 2010 By
This Blog entry is for people struggling with Lyme Disease.
These stories reflect my personal experience and opinions, and should not be used for global interpretation/diagnosis.
Diagnosis:
I was diagnosed with Lyme Disease in NYC, June 21st, 2009.
My father insisted that I see his PCP, after my seven-year attempt to find relief from persistent back pain/left-side weakness had me no better than the day I first decided to get help.
Day #3 I was at NYU Medical Center for comprehensive neurological testing, to isolate the location and nature of my problem. Needle EMG’s have a reputation for being painful, so I was relieved when the doctor told me that we would save that test for last. He then informed me that the test I was about to receive could be very painful… “but not for all people.” I prayed to be an outlier, but that was not the case. The needle went-in, he’d ask, “are you ready”, and shock me before I could mutter a word. He was clearly disturbed about hurting me, saying, “I am sorry… sorry… that hurts”, with a very, very Russian accent, after each sample. Autonomic testing was next. Nice until I passed out. He had me lie on a table for a few minutes – strapped tight – and then rotated the table to upright. Not long after, he announced that I was going to lose consciousness, and before I could say, “No”, I was out. Last was the Needle EMG, which was a cake-walk compared to the former shock-treatment. He was very interested in the muffled sound from my legs and arms, showing me how crisp he sounded in comparison. Wish I know what he was saying, but the accent was too strong. I was pretty sure he said something about “crisp” being “better.”
Reading the report on my way home, the words “multifocal motor distally-dymelinating polyneuropathy” and “polyradiculopathy (cervical/lumbosacral)” caught my attention. I was surprised, because all my pain seems isolated to my thoracic region. It seemed to me almost like I was handed the wrong report.
These findings:
Polyneuropathy:
“A demyelinating disease is any disease of the nervous system in which the myelin sheath of neurons is damaged.[1] This impairs the conduction of signals in the affected nerves, causing impairment in sensation, movement, cognition, or other functions depending on which nerves are involved”
Polyradiculopahy:
“Radiculopathy is not a specific condition, but rather a description of a problem in which one or more nerves are affected and do not work properly (a neuropathy). The emphasis is on the nerve root (Radix = “root”). This can result in pain (radicular pain), weakness, numbness, or difficulty controlling specific muscles.”
My neurologist received the news like he’d won the lottery. “Ah-ha! You, my friend, are a candidate for lyme disease.” What? What about my back? “We have a lot of testing to do, my friend!” Great.
So I got a Brain-Spect, Spinal-Tap, MRI’s, some blood work. All positive for lyme disease.
I am still undecided if Spinal-Tap triumphed my “shock-treatments”. The weight is on the former if I include my vasovagal attacks (2)as part of that procedure.
Back to my Neurologist and Primary Care Physician.
Let me tell you about these guys first. They are the “medical-mafia” as far as I am concerned: A network of mostly Jewish doctors on the upper-west-side of NYC, providing services from the basements of brownstones, all with nasty receptionists who care very little for questions regarding anything – especially how long you will be waiting. Forget about insurance, and break the bank because they are extremely expensive. My dad is “connected” because his mother worked 30+ years at Lenox Hill Hospital, and made friends with the right people..
“Do you recall being bit by a tic? Ever see a bulls-eye on your body? Experience joint pain? Fatigue?”; I answered, ”No, Yes, Yes, Yes…” Told him that I was bit by a black-fly. There was a bulls-eye, followed a few days after by joint pain and fever. I had assumed it was just an allergic response. I was wrong.
