Dr. Burt's Clinical Trial for RRMS

Today I decided to email Dr. Burt's Clinical Trial for RRMS. Last year Selma Blair m
ade the news for putting her MS into remission. I dug into that once I heard about it. It sounded promising but I know there was no way I would be able to get that treatment. She is a celebrity with access to the best doctors in the world. Over time I found out who her doctor was. At first, I thought it was Dr. Nash in Denver Colorado but later after her film, Introducing, Selma Blair, I learned it was Dr. Richard Burt in Chicago. Recently, I read his book, Everyday Miracles, and thought why not? It obviously isn't working out with the Beat MS trial since they won't respond and left me in the wind... I am so discouraged about that whole thing but with this one, what do I have to lose? They probably won't respond but we will see what happens.

Here is what I wrote to them;

My name is Julie. I am an active 33-year-old and live in rural Northern, California. I am a student at Arizona State University, pursuing my bachelor's degree in Anthropology. I love biological Anthropology. I also love to draw, sing, do crafts, exercise, and to read. I have so many interests but those are just to name a few.

I was diagnosed with RRMS in 2020, shortly after my mom passed away. My first symptoms I believe were in 2017 and were difficulty swallowing, panic attacks, and vertigo.

I had an attack in June of 2020 which lead to my diagnosis. My symptoms in June 2020 were hemi-dystonia and whole-body weakness that after 2 days recovered on the left side but dominated my right side.

Then, I had a back-to-back relapse in June and again in August of 2021. My symptoms were paralysis of my right side and this relapse happened while I was on Copaxone. I was hospitalized for 5 days and then transferred to their rehabilitation center for another 5 days for inpatient physical therapy. This was the first time I had ever spent the night in a hospital due to my own illness.

My second attack in August left gave me left-sided weakness and severe hemi dystonia. The Hemi-dystonia was so bad I couldn’t stand during the attack, my right side would fold in on itself, and my face would contort in muscle spasms. I worried about biting my tongue hard enough to cause severe damage. It was very scary. My only relief during these attacks was that they were only about a minute long. This relapse happened when I first started Tecfidera and was I was told it was probably because I wasn’t on the medication long enough for it to take effect. I had only just started it but when I did it made me very sick. I would dry heave right after taking the pill in the evening and lost my appetite completely. My doctor switched me to Vulmerity but my insurance said that they wouldn't cover it because I hadn’t been on Tecfidera long enough. I did receive a bottle of Vulmerity to last until my first infusion with Rituximab. 

My last relapse happened when I was approaching a year on Rituximab at the very end of August, the beginning of September 2022. My symptoms started with cognitive delay, trouble reading out loud, difficulty with word finding, memory problems, and again right-sided weakness. I was hospitalized for 2 days. The doctors wanted to keep me longer but we had a wildfire in our area that was getting closer to our home so, I requested prescription steroids and returned home.

Since diagnosis, I have had 4 relapses and have been on 4 drug modifying therapies. I failed Copaxone, couldn’t tolerate Tecfidera, had issues with insurance coverage on Vulmerity, and I recently failed Rituxan. My doctor recommended Mavenclad but I am not due to start that until April of 2023. At our last appointment, she recommended I look at clinical trials for HSCT and prescribed Mavencald to help “reboot my immune system”. I have no other health conditions and I am only on vitamins and Rituxan from my last infusion in October.

After doing a lot of research, and reading Dr. Burt’s book, I realized my best option to prevent further disability is HSCT. I understand that HSCT it is not guaranteed to work or to reverse damage done but I am willing to take a chance, especially since I have tried four medications without success. Please let me know what I can do to be a part of your trial.

I look forward to hearing from you.

Sincerely, ...