Hello All,

I have been missing from this community for quite some time due to, of all things, technical issues with an email address change. The problem is finally fixed and I am glad to be able join discussions. A lot has happened since the last time I was on this site, and I would like to share some information with you. Ever since the Covid pandemic in 2020 my CLS episodes had been more frequent and more severe. I have contracted Covid four times and have had the vaccination and boosters. My doctor and I were in touch with Dr. Druey many times as we tried to figure out the problem and the solution. We tried changing Ivigg brands as I was having a leak after every infusion, but that didn't help. We changed my infusions from intravenous to subcutaneous and this helped some. But in October of 2023 and in January of 2024 I had two more life threatening attacks. After the October attack, I had to be put on dialysis for several weeks.  Luckily my kidneys improved and I was able to get off of dialysis. Becasue of the October attack, the hospital staff knew how to treat me more effectively in January. To avoid kidney failure they immediately placed me on CRRT (continuous renal replacement therapy). It worked. They also used vasopressors and albumin to keep pressure in my veins and keep me hydrated while they administered Ivigg. This combination helped me have a shorter hospital stay and recovery time.  

The biggest news is that another doctor, who is a friend of the family, had been taking a Urolithin A supplement. He suggested I try it to see if it would benefit me. I began taking it in late January. It has done wonders. In the first three months I noticed the frequency of leaks beginning to slow down and the leaks were not as severe. I now have not had a Capillary Leak since April. I am back to teaching fitness classes, traveling, living a normal life, and I feel stronger than I have in years. I took the supplement to my doctor who manages my CLS to get his thoughts on Urolithin A. After reading articles and reviewing many studies from the NIH on Urolithin A, he suggested I share this information with the CLS community in hopes that it could help someone else. 

I continue to do my subcutaneous Ivigg treatments 2x a week. 

Best Regards,

Cristina Burns

 

Thanks so much Cristina for sharing this information. And welcome back!

Rebekah Sellers

For a recent (October 2023), comprehensive article on Urolithin A's effects see "Pharmacological Effects of Urolithin A and Its Role in Muscle Health and Performance: Current Knowledge and Prospects," available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10609777/

Its final paragraph reads: "In conclusion, key findings regarding Urolithin A in muscle health and performance encompass its regulatory effects on promoting muscle protein synthesis while inhibiting degradation, its interactions with crucial signaling pathways, potential enhancement of endurance and fatigue resistance, as well as its anti-inflammatory properties. These findings establish a solid scientific foundation for the potential application of Urolithin A in improving muscle health, promoting muscle growth, and enhancing exercise performance. However, further research is needed to validate these findings and to explore the safety, optimal usage, and suitable populations for Urolithin A."