My Story of Lyme
Congressional District: CA07
Issues and Challenges
Melissa has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Rare / Underserved Disease, Discrimination (nonmedical), Gaslighting, Invisible Illness, Job Insecurity / Loss, Medical Discrimination, Prior Authorization, Underserved Community
My Story of Lyme
First let me take a moment to thank you for taking the time to read about my story. May it bring awareness and an understanding into the horrible disease of Lyme.
My name is Melissa Moya and I am the founder and CEO of Lyme Fight Foundation but more importantly I am a Lyme Disease patient / a warrior as we call ourselves. My Lyme journey is 6 years in the making so far and no light at the end of the tunnel just yet. The goal to reach remission is 6-8 years of treatment.
Lyme disease is one of the biggest imitators of so many other diseases and has more than 100 symptoms. Unfortunately, current diagnostic testing missed 60% of acute cases . I know this all too well. 6 years ago I had a hysterectomy that would forever change my life more than I ever thought possible. We have determined the trauma to my body was what triggered my Lyme to become active as we believe I have had it for many years. My symptoms started about 5 months after my surgery with a lump and pain on my left breast area. We all know what I thought it was… cancer. Test after test after test were performed for a reassuring negative result. Thank goodness! The pain then began traveling down my arm and into my fingers where it would begin to start tingling and going numb. It then moved to my right foot and began to travel up my leg. I have not had much feeling, if any in, my right foot since. Symptoms just continued, heart palpitations that led to ER visits, body aches, buzzing feeling, headaches, dizziness, hard time thinking / concentrating, eye pain and blurry vision, unable to keep food down.. Just to name a few. I have seen every specialist in town all with a “nothing is wrong” determination. I have traveled to San Francisco Neuro for them to determine I was crazy, even flew to the Mayo Clinic in Minnesota for them to diagnose me with Fibromyalgia and advised that yoga and not thinking about my pain would be my solution. I have been in more MRI’s then I can count, tons of X Rays, blood work, heart procedures, heart monitors, doctor appointments, needle nerve tests and possibly the worst of the experience was a spinal tap that leaked and needed 2 blood patches. None of my symptoms nor pains made any sense to doctors or myself and tests always came back negative. One holds their breath every time test results come back. You are tossed between wanting a name for your symptoms to praying you do not have whatever it is they are testing for. I have heard so many different ideas of what it could have been.. Breast cancer, MS, brain tumor, cancer, fibromyalgia and my all time favorite.. Just good ol' crazy! One really starts to think maybe they truly are crazy!
My prayers were answered when Dr Otton with Northern Lights Medical in Minnesota listened, cared and promised to help me find my answer. After 3 years of searching, having someone care and want to help let alone believe me.. was such a relief! November 2019 I received the call that notified me I had Lyme disease and 3 co - infections. At that moment I felt two things.. Relieved for finally having an answer and scared as I had no idea what that diagnosis meant or what was to come next. I would soon learn when I started treatment in San Rafael that next month.
The journey of Lyme treatment is the most difficult thing I have ever experienced, mentally, physically, & spiritually. It’s long, it's tremendously hard, it's tiring, it's overwhelming, it’s truly a fight and that fight is not just on the patient it is on all those around them...family, friends, co-workers, everyone! It’s a burden financially as it is not covered by insurance and it's time consuming as well as mentally draining. The treatment for Lyme has many layers and there are so many things you find that need to be repaired. If undiagnosed too long it even breaks the brain blood barrier as mine has which leads to so many brain issues, such as swelling, shrinkage, lack of oxygen and blood, small strokes just to name a few. With my chronic Lyme, I also have heart and gut issues. This disease takes no mercy when it sets out to destroy your insides! I have had too many Iv’s to count, for six months I had them 2 x a day 4 days a week, ozone treatments where they take your blood “clean it” and give it back, needle injections into my skull and neck which let me tell you is so very painful, electric current thru my body in hopes of helping it heal, have taken over 100 pills a day, given myself shots, I have even done my IV’s at home with my families help. Treatment comes with so many tests, weekly blood work, pills and more pills, all that costs so very much and if covered by insurance is so very very minimal. I have to date spent over $100,000 on my treatment. The cost seems endless.
The journey is long, overwhelming and scary… I know all too well. It brings heartbreak and more tears than one should ever shed… however it also teaches you how strong and resilient one is. You learn what really matters in life, who your friends and loved ones are and most of all you learn about yourself. You can be a fighter and a survivor and if someone out there needs a reminder or that little push .. I am here. My foundation is here. One cannot do this journey on their own nor should… We are much stronger as a group! The greatest killer of Lyme Disease is suicide and I understand clearly why… hurting every single day every minute of everyday is tremendously hard both physically, emotionally, and mentally. One needs cheerleaders to hold them on the tough days and celebrate the good days.
Lyme Fight Foundation was created as my silver lining to a journey I would have never picked. The mission is to bring much needed awareness to our community, prevention education in hopes others are not handed such a terrible journey, and to bring support to those suffering. This mission cannot be successful without other’s kindness and generosity. I know that together we can make a difference and we can save lives. Thank you for allowing me the time to share my story.
CEO Lyme Fight Foundation
My Motivation and Inspiration
To spread awareness in hopes that no one takes this same journey.