Alyssa K from North Carolina (originally New York)
How long do you believe you have had Lyme/tick-borne illness?
I was diagnosed 10 years ago (2007) but was acutely sick for 2 years prior to that. It is believed I was infected years prior based on my medical history and because I suffered from multiple tick bites over the course of my life. In my teen years, I was diagnosed with mono a year after a large, circular bull’s-eye rash on the back of my knee was diagnosed as “heat rash.”
How long did it take you to get a diagnosis?
2 years, at least.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw my general practitioner dozens of times leading up to my diagnoses, a neurologist (who finally diagnosed me), and an orthopedist who suggested surgery for bone and joint pain. It was repeatedly suggested by my general practitioner that I was suffering from depression and that therapy would be a proper course of action. Even after a CDC positive diagnoses and a lumbar puncture showing Lyme Disease in my spinal fluid, an infectious disease doctor insisted I was not Lyme positive.
Were you diagnosed with anything else before Lyme? If so, what?
They were in the process of giving me a final diagnoses of MS (Multiple Sclerosis) when they figured out I actually had Lyme Disease. Depression, Mono, Arthritis and a litany of other diagnoses based on symptoms, not positive tests, were given to me prior to my Lyme diagnoses.
How long have you been treating Lyme for?
I’ve been treating Lyme and Babesia for 10 years now. Some of that time was been intensive treatment, while other years have been maintenance.
Do you have any coinfections? If so, which ones?
I have chronic Babesia and I was treated for Bartonella and Ehrlichiosis.
What types of treatments have you tried?
I work with an integrative LLMD and have done IV antibiotics, oral antibiotics, antimalarials, nutritional and diet work, herbal and vitamin supplementation, IV Vitamin C, massage therapy, acupuncture, physical therapy, PTSD therapy, cognitive therapy, and more…
List up to 5 of your biggest (past or current) symptoms:
Chronic fatigue, seizures, brain fog, pain, muscle loss and weight gain.
What is the biggest way that Lyme has affected your life?
Lyme Disease changed my entire life. I no longer have the physical abilities, strength, coordination, energy, nor health I used to have. My ability to financially provide and produce has been reduced to a fraction of what I was capable of. I lost my home, friends, and relationships. The entire experience, on an emotional, physical, financial, and medical level changed not just my entire life but fundamentally who I am. Learning to redefine your entire being, mourn the loss of a person you once were, and create new dreams within a set of newly defined parameters has been challenging and life-altering.
What do you wish people knew about Lyme Disease?
Human beings are becoming sick at alarming rates and left to figure this out on their own because we are caught in the middle of a mass scale medical controversy. Each year the numbers being diagnosed and becoming chronically ill with a debilitating disease grows larger and larger. We are no longer talking about a few thousand but are now looking at numbers into the millions. SOMETHING must be done; for the people already sick, the people who will be newly diagnosed, and most importantly for our children whose lives are being destroyed because of tick-borne diseases. We need proper tests, research, treatment, a cure and support. Lyme disease has long term economic repercussions on our society, is destroying family units and is not just here to stay but is proliferating at a rate faster than anyone ever thought imaginable. Something needs to be done not just for those already sick but for all the people who will become sick.
Any advice for someone newly diagnosed with Lyme?
Surround yourself with people who believe in you, find a team of doctors and health care practitioners that are working in your best interest not the insurance companies, don’t give up, make your health a priority, find your inner strength, practice gratitude, learn acceptance, never feel ashamed of who you are and don’t ever forget that this journey is different for every single one of us.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
Travel, go to the beach, spend time with friends and family, make art and take photos.