Hi, I'm Wendy,
When I was 21, I went up to Vermont for a wedding with my husband, Charlie. One morning Charlie's dad asked us if we wanted to walk the dog. I, being an outdoorsy girl, of course said yes, definitely! We walked through their back yard through some tall grass, over a small creek and onto a golf course. I was thinking wow, Vermont is so beautiful. Look at those mountains, not realizing my life was about to change.
We continued walking and walked back through the woods and it was so quiet and beautiful and amazing, coming from a Florida girl.
Well the excitement ended there when we came back into the house and I had all these tiny specs on me. I thought, maybe it’s just dirt, but when I picked one off of me, it didn’t feel like dirt. I told Charlie I was gonna go wash my legs off, so I did and then I googled Lyme disease.
He came to check on me and said, "I have some too", but he wasn't worried like I was, and just brushed them off. When I googled Lyme disease, the website said symptoms include, fatigue, bullseye rash, joint pain and I just thought, oh, I can handle that, even if it is Lyme. Ha.
Well I was very wrong.
That weekend we went to the wedding and I felt great. We were on the dance floor and all of the sudden it was like I got hit with a ton of bricks. I had to sit down and Charlie gave me his coat.
We went home the next day and I thought wow, I don’t think I’ve ever been sick like this before. Later, I found out that it’s very common to have flu like symptoms soon after being bitten by an infected tick.
Fast forward 2 years and I started to feel off. I was going to school at Florida Gulf Coast University, studying biology and I was having trouble remembering things, like facts for exams and meetings with lab groups. I was having trouble focusing and started to not want to be around people, which was very strange for anyone who knew me. But I continued on, received my degree and went to grad school to study biochemistry in California in the fall.
In California, my symptoms only intensified. I blamed them on the air pollution, the city life in Long Beach, grad school itself, etc., and soon realized that these symptoms were not going away, in fact they were getting much worse.
By February 2016, I was having problems with fatigue, memory, had debilitating low back pain, which made it near impossible to work in the lab, and a plethora of other strange symptoms. In May, I decided to leave my graduate program at Cal State, Long Beach.
By August 2016, we were back in Florida and I was bedridden most of the time. My hands and feet were freezing, I had shooting pains. My doctor had no clue.
By December, actually right before our wedding, I was having weird throat and mouth symptoms, like swollen tongue, burning tongue, and throat tightness. To this day, no one has been able to tell me if it was an allergy, or just the Lyme, because Lyme can cause allergies in people.
All of the symptoms continued to come and go, and doctors would blame them on the stress of getting married and said, “once you're married, you'll feel better”. But I didn’t feel better, I was getting much worse.
By February, I developed heart palpitations and neuropathy. It was getting horrible. I went to see two rheumatologists, two neurologists, an ophthalmologist, two cardiologists, an arrhythmia specialist, an allergist and more and nothing, not one of these doctors could find anything wrong.
Then in March I started having seizures, or I guess seizure-like activity. They were horrible. I couldn’t speak during them, but I was totally aware of what was going on, which just made it that much worse.
I remember having a seizure, or "seizure-like activity" while driving to another doctor in March 2017 and when the episode ended I got really dizzy and while driving my vision completely disappeared and all I could see was white, it was like blacking out, but instead of seeing black, I saw white.
I somehow managed to pull over, once the episode ended and I just started crying and called someone to come and get me. I really haven’t driven much since then.
The neurologist I was seeing said I didn’t have seizures. He wasn’t listening, and that visit, after that drive, was the last time I would see him.
My family was getting frustrated, they started to think all of this was anxiety and so did some of the doctors. At this point, I had an MRI, 3 CAT scans, a liver ultrasound, a chest x-ray, had every blood test known to man, and went to the ER something like 9 times. It was so awful, and no one could give me any answers.
My brother-in-law got me in touch with a patient advocate in New York and he said all of my symptoms were classic of late-stage Lyme disease. He was working hard on getting me an appointment in NYC or Connecticut with a Lyme Literate Medical Doctor (LLMD). But they had long waitlists, like 7-9 months, so I had no idea what I was going to do.
I was admitted into the hospital for my heart at the end of June 2017, at the age of 26 and when the infectious disease doctor came in she said, “I can tell you one thing, you don't have Lyme and continued on, saying, "Wendy, I really can't believe your symptoms... everyone thinks they have Lyme”. She later admitted that she stopped treating Lyme disease 5 years ago because of how controversial it was.
I was in that hospital bed just too sick and too tired to even cry and just thought, I'm going to die by the end of the summer if I can’t get treatment.
Then an amazing nurse, named Jamie came in and she said, "I know that the doctors don’t think you have Lyme, but I saw a patient just like you last summer and he ended up having it". She amazingly enough had his contact information and she referred me to my current Lyme doctor.
The following week I met with the Lyme doctor for over an hour. He started me on high dose antibiotics that day. I can't express enough gratitude to that nurse and to my current Lyme doctor. They truly saved my life.
As I was improving, life threw another curve ball. I was seeing my Lyme doctor for about 4 months when my husband, Charlie woke up one morning and couldn’t walk. His most debilitating symptom was pain and he walked with a cane for much of 2017 and 2018. He was eventually diagnosed with Lyme, Bartonella and Ehrlichia, while I was diagnosed with Lyme, Bartonella and Babesia.
It's been a pretty crazy year, but now a little over a year into my treatment, I'm starting to feel like my old self again. Many of my symptoms have disappeared and although I still haven't hiked, exercised, etc., I am just so grateful to be here!
As we payed for our treatments and hospital bills, I was shocked at the expense of it all. And when I learned thousands of people around the country were looking for funds to see a LLMD and get a diagnosis, or to continue antibiotic treatment, I felt compelled to do something to help!
So while I was recovering myself, I decided that my goal was to raise money for people of all ages throughout the United States, so they could see a Lyme Literate Medical Doctor, get a proper diagnosis and start treatment, and that was how the Lyme Treatment Foundation was born!
Please consider donating. Every bit will help someone in need of life saving treatment. Together we can make a difference!
Founder & Executive Director
Lyme Treatment Foundation, Inc.
Wendy Phillips, Founder & Executive Director, Lyme Treatment Foundation
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