I have been an advocate for patients and practitioners of Lyme and other tick/vector-borne diseases (TBDs) since 2011. I served on the Board of the National Capital Lyme Disease Association and co-founded and facilitated a regional support group. I have and continue to lobby for medical-political change on behalf of the TBD, alpha-gal, and mast cell communities, and the practitioners who serve us.
My professional background is in cellular biology.
My personal story is likely much like your own in that it took me years, with a sundry of doctors in the wake, to be properly diagnosed despite having dozens of known tick bites over a condensed period of time. My initial symptoms were panic attacks, PVCs, and a near complete loss of balance. For eight years I could not walk in a straight line, or sometimes at all, without assistance and was unable to drive or perform mundane tasks like grocery shopping due to the overload of visual stimuli. My 8th cranial nerve, the vestibular nerve, was hit hard. It was akin to being on a rocking boat 24/7 with occasional bouts of true vertigo and tinnitus.
In 2006 I abruptly developed severe joint pain and Bell's Palsy from another bite. I had no doubt about the connection.
I found a Lyme-literate medical doctor who placed me on a PICC line with intravenous antibiotics almost immediately. Six weeks later I was able to walk independently and drive. I never tested CDC-positive. I had also acquired "coinfections" and was treated concurrently with continued Lyme protocols. I have been in remission since 2018.
Alpha-gal (AG) allergy commenced via a tick bite while walking to my car through a friend's front yard (*always* take precautions!). Thankfully I knew to avoid consumption and application of all mammal/byproducts until I got tested. It came back positive. I was blessed to be seen by one of the co-discoverers of AG who shared an office with a terrific mast cell disorders specialist. They remain my mentors, and I am so thankful for them.
A year after AG and while avoiding mammal everything, accidental cross-contamination occurred and I had my first anaphylactic episode four hours later. AG then morphed into full-blown Mast Cell Activation Disorder (MCAS). Toxic mold exposure by way of my condo's HVAC was the proverbial straw. I was hospitalized four times in six months, down to 82 pounds and eleven foods despite a very full MCAS protocol, and my physicians confessed they did not know if I would survive. I type this with full acknowledgement of absolute miraculous interventions that occurred, and some real-life angels who, so very graciously, remain in my life.
I now spend my time happily chasing after my toddler daughter, another unexpected miracle. My love for the outdoors hasn't waned; you might even catch me hugging a tree. I enjoy hiking, plodding in creeks, waterfall pools, and exploring new sites with my little adventurer. I still find deep gratification with my hands wrapped around a good microscope, and appreciate music, museums, and the arts.
Here is what you need to know...
You are not alone in this.
Really.
Truly.
As one of my LLMDs repeats to her patients after every appointment, "You are important, and you matter".
