Journey to Overcome PANDAS-Autoimmune Encephalitis

My name is Ethan Payne, I live in Verona, WI, and I am 27 years of age.  For the past 10+ years, I have been battling an autoimmune condition known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection.) The video above by Dr. John Bartemus lays out the causes, symptoms, and treatment for PANDAS. 

PANDAS has been extremely debilitating to me. The combination of physical and mental symptoms greatly effected and continues to affect my ability to live a happy, healthy and functional life. I had to take three semesters off throughout college to address/manage my symptoms, so it took me almost six years to get my accounting degree. I had to take three disability leaves from my first accounting job out of college because I wasn’t capable of performing my job responsibilities when not healthy, which was a good chunk of the time. I haven’t been able to start saving for a house or wedding because I can’t get in front of medical debt. I can’t even manage simple things like having a logical conversation or keeping track of my own schedule when I have a flare. If I didn't have the support of my family and friends, I wouldn’t have made it to where I’m at today. 

This less than ideal quality of life is the result of not being able to find a doctor that’s able to provide a treatment plan to keep me consistently healthy. I’ve pursued many doctors in various specialties such as immunology, neurology and psychiatry. Unfortunately, they didn’t have the knowledge of or experience with PANADAS needed to recognize the condition and effectively treat it. This made it extremely difficult to obtain a diagnosis, pursue proper treatment, and gain insurance coverage for all related medical expenses. This is additionally problematic because the longer a person with PANDAS goes untreated or mistreated, the risk for permanent damage increases significantly.  

In February 2020, I came across Dr. Bartemus’ in an online PANDAS forum. After following his many posts and videos, I reached out to him in May and decided it was worth it to pursue an initial visit with him in Cornelius, NC. Even though it was going to require some travel and a fee for the visit, that seemed minimal in comparison to the potential benefit. The initial visit was so much more than I could have asked for out of a healthcare professional. He was so knowledgeable and was able to explain everything in ways that were easy to follow. Based on his review of my complete medical history, he was able to come up with a list of things he believed were contributing to my symptoms. Dr. Bartemus then stated something I had been waiting so long to hear, "I can objectively test to prove or disprove my findings using four comprehensive tests. Based on that information, I feel confident treating these issues and comparatively testing to display progress." That statement gave me so much hope, especially when I was almost to the point of accepting that I would just have to deal with my current quality of life.

Dr. Bartemus is willing to work with my current doctors to provide a complete care plan that is supported by tangible evidence through comparative testing. Unfortunately, the testing and resulting treatment, won’t be covered by insurance. I am not in a financial position to pursue  even the initial testing with Dr. Bartemus without support. The initial testing will cost $2,100 and will need to be done every three months for the foreseeable future. The treatment will be dictated by the results of the initial and ongoing testing, so a price quote for the treatment wasn’t available. It could cost more or less than the testing according to Dr. Bartemus. 

If you are willing and able, my family and I would be forever grateful for your support in helping me pursue this incredible opportunity. All donations will go directly to the costs of initial and ongoing testing as well as whatever treatment results from this testing. Thank you so much for your willingness to donate and I'm so excited to further my road to recovery with your help!

Donations

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  • Renee Monroe  
    • $100 
    • 1 mo
  • Anonymous 
    • $20 
    • 1 mo
  • Junck Family 
    • $25 
    • 1 mo
  • Kelly & Brad Richardson 
    • $100 
    • 1 mo
  • Beth Trainor 
    • $25 
    • 1 mo
See all

Organizer

Ethan Payne 
Organizer
Verona, WI
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