Hi fellow Anne,
I did not have a diagnosed autoimmune disease before Covid, but my doctor thinks I have one now thanks to this lovely virus.
But, the drug I’m taking is starting to work, today I had about 3 hours of feeling normal, with normal energy. My heart rates are significantly better. My avg heart rate and my walking heart rate have both gone down by about 10 beats per minute, and my resting heart rate is down by 6.
I’m still trying not to get my hopes up too much, and just be happy during those moments when I feel better.
I found out about this research when I saw Bruce Patterson, the primary researcher, online at a Covid conference. What he said made sense to me physiologically, so I finally went to this site and ordered the cytokine and spike protein tests. They’re expensive - that’s why I waited for about 5 months before I just decided to take a chance (there are some insurance codes that may work for some reimbursement).
Anyway, 72% of my lab results were abnormal. It was incredible to finally see what was causing my problems.
You have to have your own doctor working with you. The clinic only consults, they do not prescribe medication. My primary care doctor is all on board - he’s very interested in figuring out how to help his LC patients.
The drug I’m taking, maraviroc, was developed for HIV and it attacks the Covid debris (the spike protein) that’s causing all my inflammation.
I did some research ahead of time and read an article that looked at the pros and cons of Dr Patterson’s (Dr P was the head of Stanford Medical Center’s virology department) research. It criticizes Patterson’s grandstanding, but also says that P’s studies validate that the drug I’m on shows the most promise for people like me - those with extreme fatigue and dysautonomia. I’ve been on it since July first - and I finally seem to be improving. 🤞
Here’s the link if you’re interested:
https://www.covidlonghaulers.com/north-america/home
Let me know if you have other questions. I hope you find something that helps.