How has Lyme Disease affected your life? What inspires you?
‘A Thief Named Lyme’
Undetected Lyme Disease is a stealthy, insidious, and patient thief that robs you of your life with no prejudice or mercy. Late Stage Chronic Lyme Disease, Babesia and Bartonella have taken my money, my job, and obviously my once taken-for-granted healthy life. Lyme and ‘friends’ (other TBD’s- Tick Borne Diseases) are sneaky. If you aren’t one of the ‘lucky ones’ to have found the tick and/or gotten the tell-tale bullseye rash then the chances of you having Lyme Disease and its ‘friends’ probably wouldn’t even cross your mind. It didn’t mine, especially after many negative test results.
My symptoms started in 2004 as left facial numbness, headaches, tinnitus, fatigue, and neck pain which are fairly classic Early Stage Lyme Disease symptoms. However, without ever seeing a tick (which can be the size of a grain of sand) and/or a rash it’s difficult to know for sure when I was infected. I have worked many summers on the island and grown up here as a child so I knew I had a higher chance of exposure, but not having found a tick I really wasn’t that concerned. I started seeing a neurologist who over the course of 6 years tested me 7 times for Lyme Disease- twice by spinal tap- all with negative results. At this point I was convinced I did not have Lyme Disease. Little did I know.
By 2008 my symptoms had progressed and seemed unrelated. I was being sent from one specialist to the next. Nobody connecting the dots that the facial numbness and migrating joint pain were related to the continuous sinus infections I was having for a year, or to the bouts of GI symptoms that kept me out of work for months or the year long fever I had for no apparent reason. By then the chest pains, dizziness, vertigo, anxiety and mood swings (lovingly called Lyme-Rage by us Lyme Warriors) had also joined in on the fun.
Fast track to 2012 when literally overnight my world got turned upside down. I had full body tremors, difficulty walking, cognitive issues, and my hands became painful and nonfunctional. Over the next 3 years I went to neurologists, rheumatologists, gastroenterologists, urologists, and my primary care doc more times than I care to remember. I even went to the Mayo Clinic for a week. The only diagnosis anyone could come up with was neuropathy (a disease condition of the nerves), but no one could figure out what was causing it.
With neuropathy my symptoms are shooting, stabbing, pins and needles, burning nerve pain anywhere and everywhere in my body. My toes, fingers, nose and ears always feel frost bitten. I can’t control my body temperature. Other symptoms include night soaks, urinary incontinence, light and sound sensitivities, coma-like fatigue, and insomnia. My muscles ache like I’ve run a marathon and then got hit by a truck, and also have the flu. The horrible body ache is my constant pain. I have confirmed memory loss, and major problems reading/writing/multitasking because of this. I have not been able to work since 2013.
On Christmas day 2014 someone suggested I watch Under Our Skin a documentary about Chronic Lyme Disease. After watching and relating wholeheartedly to it I immediately contacted ILADS.org for a local LLMD (Lyme Literate Doctor) and got tested at the right lab (Igenex) and low and behold I was positive for Lyme Disease (a spirochetal infection), Babesia (a malarial type disease), and Bartonella (cat-scratch fever: a bacterial disease). I have been in treatment ever since and unfortunately I will be fighting these diseases for the rest of my life. When Lyme is caught this late in the game it is termed Late Stage Neurological Lyme Disease and is the most serious form.
While I was waiting on a correct diagnosis, Lyme and ‘friends’ were pillaging one room of my house to the next. Moving from one organ system to the next- including my brain, heart, and nervous system. It’s taken over every organ system in my body and it doesn’t plan on leaving. If I had known the conventional testing was no better than flipping a coin I may not be in this situation.
(Published in the Washington Island Observer in Wisconsin about my Lyme journey. My family has a cabin there. It’s a 26 square mile island with more deer than people. Roughly 700 year round residents.)