Former Journalist | Tech Entrepreneur | Chronic Lyme Patient
Early in my health journey, I believed there was one cause, one diagnosis for the constellation of symptoms that had popped up in the summer of 2007 to make my waking life miserable. Over the years, however, as I navigated a broken healthcare system and tried a number of things that caused more harm than good, I very slowly realized just how complex and multi-faceted all of this can be.
Looking back, for me the hits to my system started in 1994, playing college soccer. We were going against RIT if memory serves (which it often doesn’t) and I went up for a header and was knocked unconscious. When I came to, I was on the bench. I knew the guys next to me, but couldn’t remember their names, didn’t know who we were playing, what the score was or why I wasn’t in the game. My memory returned about 15 minutes later and was otherwise “fine”, but that was my first major TBI.
Fast forward to probably 2002 or so (I was never good at organizing my medical timeline) and I had moved out to Colorado. I was again playing soccer and took a head or maybe an elbow, never did find out, right above my eye. I didn’t lose consciousness this time around, but I slowly got nauseous, started having vision issues and my memory left me by the time I reached the hospital. Significant TBI #2.
This one I didn’t recover from nearly as quickly and actually ended up having bad Post Concussive Syndrome (PCS), which none of my providers at the time believed was real. My first introduction to medical gaslighting, well before my Lyme diagnosis.
Anyway, it took me roughly 2.5 years to mostly recover from my second concussion and get back to some semblance of normalcy. My soccer days were over, but I started to get really active again, playing a ton of volleyball, mixed in with some basketball, skiing, running, hiking and mountain biking. I was feeling good and had completed a half marathon and sprint triathlon.
Not long after the half marathon, however, I started to get cramping in the palms of my hands and soles of my feet. That slowly progressed to migratory muscle pains, mostly in my legs to start. My knee started to give out for no reason when playing volleyball and all of the sudden I couldn’t catch my breath when exerting myself.
From there, I started to get worsening GI symptoms — premature fullness, bloating, upset stomach — and a knot below my sternum which inhibited my breathing, along with consistent muscle pain, especially in my hands, legs and neck. Over time, neurological symptoms started to appear, with bilateral inner ear dysfunction, heavy brain fog, processing and memory issues, eye floaters and blurriness, mood swings (especially feelings of rage) and dizziness. Through it all, my energy levels were non-existent and the smallest chores seemed beyond me.
At its worst, probably around 2012 or so, I was having 25 – 30 waves of dizziness daily, difficulty walking (thought I had MS at that point, especially with non-specific white lesions on my MRI) and was feeling fairly helpless and hopeless.
You’ll all recognize this next part. Over the next five years I sought out any number of specialists after finally accepting my primary had no idea what was going on — ENTs, neurologists, DOs, allergists, ophthalmologists, connective tissue specialists, naturopaths, acupuncturists, etc. It’s mostly a blur. During this span though, I had put my name on the waitlist of a well-known functional medicine provider in CO, and roughly 2+ years after being on the waitlist finally got in to see her for my Lyme diagnosis.
Some 10 years had passed from my initial symptoms. Sadly a common story for many of us in this community.
I won’t bore you with all the details of the providers I’ve worked with and the protocols I’ve been on since I started on my Lyme and co-infection journey. Suffice it to say there was a lot of ‘1 step forward, 3 steps back’ and a multitude of rabbit holes. I started with antibiotics and supplementation for Lyme, eventually moving to disulfiram (before getting severe fibromyalgia) with a doc out of Montana. Then I switched to working on Babesia and Bart with another doc out of New York.
From there I changed focus a bit, moving more into the mold and CIRS realm and working with a different doctor in CO on the Shoemaker protocol. I had become incredibly sensitive to just about everything at that point and the binder cholestyramine (CSM) they had me on caused a blockage. Took me 4 months to figure that out and to address it, probably the worst 4 months since everything started in 2007. Almost a year’s worth of mold remediation and remodeling eventually followed.
During all of this, my collective frustration built up over the years bubbled to the surface and Ravel was born. It was part selfish, wanting the last decade plus to count for something, and of course part wanting to make sure other patients didn’t have to deal with the misdiagnoses (or no diagnoses), medical gaslighting, untrained providers and exorbitant out-of-pocket costs.
I was fortunate to meet my co-founder, Jaime, around this time. Like many patients in our community, we had similar stories and similar frustrations and we decided to join forces, and the rest as they say, is history.
There have been a lot of ups and downs since this all began in 2007 (or really probably back in ’94 with that first concussion), with gradual improvement over time. While not necessarily close to 100%, I feel like I’m trending in the right direction and I’ve started doing some things around brain and nervous system retraining, which have really moved the needle for me, so excited about that.
We’re all obviously different and the same things won’t work for everyone, but we’re committed to providing patients with the best possible experience on their Lyme, mold and complex chronic illness journeys. It’s not always going to be perfect, but we promise to keep learning and to keep improving, in the hopes that all of us can return to full health and lead the lives we were meant to live.
