Health & Human Services - Tick-borne disease Working Group

---

Wendy Phillips, Founder at the Lyme Treatment Foundation

To the Tick-Borne Disease Working Group,

I am the Founder and Executive Director at the Lyme Treatment Foundation, and I have Lyme disease.

Before being diagnosed with Lyme disease in 2017, I was in graduate school in California studying biochemistry. I ended up leaving my graduate program because of a mysterious illness that no doctor could diagnose.

I lost the ability to read and comprehend, follow written directions, I developed seizures and eventually became bedridden with heart problems from this debilitating disease. 

I moved back home to Florida and the symptoms I was experiencing became unbearable.

By January 2017, I was suffering with seizures, neuropathy, heart problems, excruciating back pain, dizziness and more.

It wasn’t until I was 26 and was experiencing heart palpitations of 190 beats per minute, that I was admitted into the hospital for my heart in July 2017. I truly thought I was going to die from this horrendous disease.

Luckily, while I was admitted into the hospital, an amazing nurse named Jamie came in and said that she thought that I had Lyme disease. The multiple physicians who saw me that day in the hospital disagreed, but this incredible nurse sent me to my current Lyme doctor, and I have been in treatment since 2017.

I still have symptoms.

This disease is a systemic, long term, life changing, horrific illness and even worse than the symptoms, is the way physicians treat these patients, who are just looking for answers, just looking to reclaim their lives and health.

Most physicians do not understand this illness, they do not understand that it is a chronic, debilitating disease and patients are often laughed at, told to see psychiatrists, etc. and end up suffering indefinitely.

I run a non-profit where we provide individuals with Lyme disease treatment grants worth up to $4,000, to fund long-term Lyme disease treatment that is not currently covered by insurance.

Since launching in 2019, we have received 938 applications for treatment grants from people all over the country, (including 49 U.S. states and Puerto Rico), pleading for funds for the treatment of chronic Lyme disease.

In 2020, we even expanded our granting program to those living in Canada, too, thanks to our partnership with The Avril Lavigne Foundation. And in 2021, we expanded our reach even further, to include the United Kingdom and Germany to help even more people suffering from the debilitating effects of Lyme disease. 

Here are some of the stats from our 2021 grant applicants:

• 76% of our grant applicants report experiencing debilitating heart symptoms
• 89% of our grant applicants report experiencing daily pain
• 63% of our grant applicants report being unable to work

People are suffering. I have read many of the applications that we receive, and it is truly awful what is going on. This is a chronic illness and should be designated as so. In our own applications, many entire families are affected and cannot afford proper testing and long-term treatment, and they need your help.

We need accurate blood tests, so that those suffering from Lyme disease and other tick-borne infections can be diagnosed early. We need this so that people do not develop severe symptoms from a late-stage diagnosis. We desperately need your help!

We also need long-term treatment covered by insurance. Too many people and families cannot afford long-term treatment on their own, as we see daily from those who apply for treatment grants with us at Lyme Treatment Foundation.

And worse, with so many being unable to work, many of our applicants have attempted filing for disability, but because Lyme disease does not qualify as a disabling condition, almost all of them are denied. We need your help getting insurance companies and employers to recognize how debilitating this disease is.

Some of our grant applicants have lost their homes due to attempting to pay for long term care on their own, and many of them have multiple family members affected by this illness.

Please, vote on calling this a chronic illness. The suffering happening cannot be put into words and we need your help! Labeling this illness for what it is, a long-term, disabling, life altering condition would help countless lives.

Thank you for your time and understanding on this matter,

Wendy Phillips
Founder & Executive Director
Lyme Treatment Foundation, Inc.

lymetreatmentfoundation.org

Content created by Office of Infectious Disease and HIV/AIDS Policy (OIDP)
Content last reviewed October 2, 2022