Monica W. from Colorado
Updated: May 3, 2020
How long do you believe you have had Lyme?
How long did it take you to get a diagnosis?
From the time of acute debilitating illness…7 ½ years.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
YES!!! Primary care (multiple), ER providers (multiple), gastroenterologists (multiple), gynecologists (multiple), neurologists (multiple), rheumatologist, endocrinologist (multiple), dermatologist, ophthalmologist, infectious disease, multiple other specialists and surgeons.
Anything else you would like to share about trying to find a diagnosis?
I was repeatedly dismissed and had no access to testing for Lyme Disease, even though I had been a field wildlife biologist my entire career, was born and raised in the Northeast US, and had multiple tick attachments throughout my life. I was told over and over that Lyme does not exist in Colorado - even though I had lived and traveled in highly endemic parts of the country. The mere belief that Lyme does not exist in Colorado kept me from testing and diagnosis.
How long have you been treating Lyme for?
3 ½ years.
Do you have any coinfections? If so, which ones?
Yes…Anaplasmosis, Bartonella and Babesia.
What types of treatments have you tried?
IV and oral antibiotics and antimicrobials, herbal and supportive care. Treatment has helped!
List up to 5 of your biggest (past or current) symptoms:
Gastric dysfunction, cognitive dysfunction, widespread PAIN, fatigue and insomnia.
What is the biggest way that Lyme has affected your life?
The severe disability and diagnosis was the only thing that led to my children and husband to get tested and treated for these diseases. It cost me my career, our financial security, friendships and many of the activities that I loved…it has strained our marriage and our family in ways that are too complex to describe. BUT, it inspired me to help others: patients, physicians, previous co-workers, family, friends and our community to become armed with the information that we were lacking. It led to the establishment of our 501(c)3 non-profit “Colorado Tick-Borne Disease Awareness Association” to promote education, prevention, research and advocacy - and this has become my passion.
What do you wish people knew about Lyme disease?
Lyme and other tick-borne diseases are expanding in geographic range and prevalence. This is a nationwide and worldwide issue! These diseases are often difficult to navigate as testing is unreliable, manifestations of illness are so diverse, and physician education/experience is so variable. Prevention of a tick bite is the best way to avoid disease, but it is not foolproof. Timely and accurate diagnosis and treatment is CRITICAL to best outcome. Awareness NEEDS to be elevated! The effects of this disease can be debilitating in the physical, emotional, social and financial arenas….and understanding of these impacts is sadly limited.
Any advice for someone newly diagnosed with Lyme?
You are not alone! Seek the care of a medical care provider EXPERIENCED in treatment of Lyme and the multiple other tick-borne diseases. Reach out, get the facts, advocate for your health if you are able or find a loving, capable advocate if you are not.
Fun fact time! What is your favorite thing to do in your free time?
Getting to the outdoors with my family! Yes…with protection against ticks!