Light

Somewhere in 2012, I contracted two lyme co-infections. However, I did not get any of the known initial tell tale symptoms: Bullseye rash or high fever to name two. If I was bitten by a tick, I did not catch it in my usual tick-check post ride. I pull so many ticks off myself throughout the summer season and happen to live in one of the most heavily infect states let along counties (Hillsborough county show up as something like 80% of ticks tested being carriers of one or all of the tick-born illnesses). The routine is part of my regiment: Check legs post ride. Strip down buck naked and do another check. Hop in the shower and hose down. Put clothes separate from other clothes. And still I’ll find ticks. We have 3 fuzzy critters too. All of which go outside. So some may find their way that way too. But I have been reluctant to share my tale here till I knew with confidence what was up. It’s taken over 7 doctors and 4+ years of back and forth to figure it all out. Not until this past spring did I finally say: enough is enough. I was beginning to mentally “normalize” the abnormal. I needed to get to the bottom of this and that means seeking out a Lyme Literate Doctor so I can once and for all either say “yay” or “nay” on the possibility of my symptoms being Lyme related. So I’ll detail my experience below. This isn’t to scare anyone, but simply to put together my experience so others who are experiencing something similar without answers, can possibly find this helpful. But one thing that I want to make abundantly clear: I have not let this take over my life. I’ve been leaning on mental toughness and will power, determination and what I call “The Inside Force” to carry me through this. I’ve been riding this whole time too. Sometimes with gusto, other times just barely because of fatigue. But like Kat Daley says: YOU GOT THIS. So it’s with this continued spirit, I’ve been attacking each day and healing slowly one pedal stroke at a time.

So as I mentioned above, somewhere in 2012, something wasn’t quite right. If I did have any initial symptoms, no bullseye rash appeared and I “might” have had flu like symptoms. Which I could have shrugged off as allergies (some springs and summers are worse for me than others as I’m allergic to pollen – which coincidentally, can give me FLU LIKE SYMPTOMS: Soreness. Scratchy throat. Stuffy nose. Fatigue or overall tiredness. But all that didn’t register. Business as normal till one day I woke up, sat down on the toilet but noticed my legs were twitching. Subtly. Constantly. However, that day I had just finished up a long ride for me (40 or 50 miles) as I was prepping for the H100 which was a new thing for me. I’d traditionally ridden shorter rides ever since high school. Really not exceeding 15-20 miles actually. Most were short intense and very anaerobic. Not aerobic in the true sense. SO I thought: “Maybe my body is just plain tired and needs recovery”. This led into some night time cramping too. Pop up and my hamstring would go ballistic (and I have never been one to cramp). I was also cramping 2 hours into rides too. With some research I figured out I was just going too fast too soon and on the bike cramping was put in check with proper warm up, heart rate, food/hydration etc. But that muscle twitching was still there. Odd.

Hampshire 100 completed, but muscle twitching still was there. More oddness. Then in 2013 through 2014, I was having a lot of fatigue problems and I wasn’t sleeping so well. Like I’d pop awake at 2am, and not be able to get back to sleep some time around 5 or 6am. This went on for months. Right around this time, Lynn was also going through a lot of transitions with Eastern Mountain Sports and their eventual sale/liquidation of their staff… Which wasn’t exactly not stressful for her and that passed on to me. Maybe this was some of that? But the symptoms continued to mount where it literally felt like I had been run over by a truck some days. Riding was a real effort and took true will power. I also started having trouble with floaters in my eyesight. Mental brain fog / forgetfulness. Again, these are symptoms of lack of sleep (Fatigue, memory etc.) But these are also brought on / triggered by Lyme and it’s co-infections. That winter I decided I was in tough shape, and this was NOT normal. So I went into to see my doc during an annual physical to tell him of my symptoms. He thought it was sleep apnea and scheduled a sleep test. (Seriously?) I did not think that was it. I really genuinely thought and felt as though “something is after me.” I’ve been an athlete all my life and am in pretty good tune with my body. That didn’t sit right with me as sleep had never been an issue. So second opinion followed with some additional testing. I was dramatically vitamin D deficient. Which would explain the fatigue but not necessarily the twitching, but fatigue and stress can do weird things. Ok, I was put on a regiment of Vitamin D. Harmless enough. Around this time I had already been up and down my diet (which was and is impeccable). I was literally racking my brain to figure out what changed. Nothing really. Major switch in diet was less meat as my wife is a vegetarian, but I still get my fair share of protein via beans and fish.. Back to observation of my body, something still felt off. Like I’m fighting something.

So 3rd doctor visited and change of primary physician. More testing. I insisted on a Western Blot test. I literally had to ask firmly I wanted to be tested. One thing to know about Lyme and it’s confections is that it can mimic a lot of other diseases but if it’s been in your body for a length of time, it often moves from the bloodstream and settles down for a long life in your central nervous system and it can hide/cloak itself so it goes largely undetected even by the most rigorous testing. Any lyme literate doctor will tell you that testing alone is not the end all be all confirmation. You must listen to the patient and observe/pay attention to the symptoms they are describing and use testing as a foil against this but not as the final say given Lyme’s ability to mimic, cloak and go largely undetected. I fell into the stereotypical Lyme patient of seeing over 3 doctors over 3 years before you get the right treatment. But of course, my testing came back negative. So on to other possibilities. I was experiencing lower back pain and by this time I was also developing a drop foot on my right side and a gait instability. Literally I could not stand on my toes with a one footed calf raise. My foot was glued to the floor. Signals from my brain were normal, but the return was not which resulted often in things “sort of working” or just not being normal. Often I’d pick up a leg, only to have the opposing muscle group begin to not stop contracting, so I’d have to straighten my leg out to get it to stop contracting. It was annoying to say the least. Again all this and I’m still riding. Still working. Still vigilantly going to the gym 2 times per week and adjusting my workout to try and strengthen these weaknesses I was developing.

Then to a 4th doctor who in retrospect, actually was helpful but did not know enough about what it was they were actually seeing in the testing. EMG’s followed which revealed “demyelination”. But testing also showed active attempts by my body to “re-nervate” muscles. So whatever it was, it was going after the fatty protective sheath on my nerves and my body was trying to heal itself. This was at odds with say what MS testing would show or ALS may show (which the Neurologist went over with me as painful and scary as all hell as that was… You DEFINITELY don’t want any of those, and most certainly do not want to be misdiagnosed). I went and saw a back specialist and had a full thoracic MRI. 2 x 90 minute session with and without contrast. Then a 3rd. Still nothing. I was then recommended as an “interesting case” down to Massachusetts where I saw a specialist with neuro-muscular diseases in athletes. More EMG’s. More time with 2-3 more doctors. EMG’s corroborated first findings… oh but wait! We’re noticing changes and improvements in other tests. “You’re such an interesting case” they say followed by “…but we do not know what’s going on. We’ll need more tests and more time”. And now this is when i could no longer feel my feet. Numbness would come and go. Rotate. Intense sensation of cold or heat would set in. My feet would literally be red and purple with blotches or be stone cold and take on a white leathery appearance. And sudden pin point searing pain that would come as quickly as it would go. When I asked him about Lyme, they shrugged it off and said “I don’t think it’s that. This is something else.” Then came the diagnosis “I think you have a hereditary neuropathy.” Basically have a happy life but don’t sign up to be a tightrope walker.

Right around this time, I was also in recovery mode really starting to feel better. It had not occurred or had I noticed the cyclical nature of all this until this past fall of 2016 when I was at the Philly Bike Expo walking in down town Philadelphia when all of a sudden… my gait started to act up again. It was hard to push off with my right foot. So I slowed down, took my time, got my cup of coffee and went on with the rest of Sunday’s show. But I had been feeling better but now something was up. This tapered off after the show 2-3 weeks later but then again this past spring of 2017 I developed intense pain in the backs of my legs that would radiate up and through my hamstrings and I no longer could sit more than 5 minutes without my legs and feet going complete numb and being really uncomfortable. Again: Still riding. Still going to the gym fighting for every inch. At some points and on some rides, my legs would feel like lead. I’d go from totally fine to “SHIT. Fatigue is coming on and I haven’t even gone through that creep leading up to it.” Other times, and this is the most prominent for me, would be a total and complete lack of power. Like push as hard as I can and just barely keep those pedals revolving. I’d get invites to long group rides and turn them down because I did not want to be “that guy” literally holding everyone up and having the wheels fall off only 10 miles in. So I just went back to that self imposed cave of solo riding. Taking solace in this one fact: I can still ride. If I can still ride, I’m still good. That was paramount. I had to ride. And there have been times when I though “shit, can I actually ride?” When that doubt would seep in, that’s when I’d call on that INSIDE FORCE to motivate me and dig deep. To say to hell with these symptoms and I’m fighting through it. Mental toughness.

But this past spring I had enough. I was thoroughly frustrated with the medical community. No one seemed to know what was up and this is with 1000’s of dollars worth of testing. What they could tell me was what I DIDN’T have. It really felt like when I’d describe my symptoms, no one truly listened (this is my perception) and everyone would shrug off the stuff that most concerned me. They would fall back onto routine and try and fit me into that slot that says “this is what you are”. No observation and true problem solving from what I could tell. All this came to an abrupt head when I saw an acute disease specialist who said “You need to start managing your symptoms and making adjustments to your daily routine so you can live a life that is manageable.” That doctor went on to show me braces for my lack of ankle stability and started recommending pain medications (opioids) to manage my pain. This was the end of the line basically and I just needed to come to grips with this fact that I was going to be living with this daily till the end. That did not sit with me as again, I really felt like something was after me. Gnawing away slowly and I was actively fighting back. I walked out into that parking lot white hot and steaming with frustration. I sat down in the car and took a minute to myself thinking when a conversation popped into my head I had with a good friend a while back who had experienced many of the same darn symptoms who went undiagnosed for some time. He ended up seeking out a Lyme Literate Doctor who happened to be a Naturopathic doctor. I know what you’re thinking as I was thinking the same thing: now I have to go to some kook? But by this time I was willing to try and see anyone to try and figure this out. I hadn’t gotten anywhere with traditional medical doctors and experts. So I dug up the contact, made the phone call, did some research and decided what the heck. Dr. Greenspan was an expert in the field of Lyme Literacy so what do I have to lose? At the bare minimum, I just wanted to scratch Lyme or more important the co-infections off my list so I could get on with my life and go on to the next plan. So an appointment was set.

All I can say is boy am I happy I took that chance and rolled the dice. Here I am since July 4th of starting my treatment plan for two co-infections (Bartonella and Mycoplasma Pneumonia) and I’m starting to see some light at the end of the tunnel as symptoms slowly wax and wain. I’ve had genuine moments and days where I’m feeling more like that old self. Symptoms will come on in waves then go away quickly as the bacteria react to the antibiotics and supplements I’m on. But Dr. Greenspan listened closely to my symptoms and all the symptoms others shrugged off or threw their hands up about, she really honed in on and paid close attention due to her expertise and knowledge. Especially those in my feet which are apparently tell tale signs of Bartonella. I’m not symptom free by a long shot but I’m making progress slowly. I’m reassured by her staff’s positive outlook and support and that emboldens my own too. And through all this, I’ve still been riding. I’ve still been in the gym even if it has been a struggle. I can’t imagine what I would look like and feel like if I WAS NOT doing all those things and insisting on being active to try and fight all this. But one thing is certain: There’s a certain level of skepticism from the medical community about the seriousness of this bacteria and the co-infections. Some take it seriously, while others do not since the “test” said so otherwise. I had to be persistent and insistent and really start to question the doctors I was seeing (which in many cases, they did not take kindly). My own job here as a designer first is to problem solve. That starts with observation. To truly see. To truly listen. That means I must set aside my differences. I must set aside my pre-conceived notions and truly understand what it is I’m observing. Because then and only then do you really truly begin to formulate a plan that leads to unique solutions for the problem you’re facing. I’m by no means out of the woods on this one, but like Poppy used to say: “NOW WE GO.”