Hi Colleen, Please see my posts from April 13 & 14. Dr. Herbst is now with Advanced Lipedema Treatment and seeing patients. She said it will be awhile before she begins trials for the med CBL-514. I saw her on July 9th, and she said I have Dercum's, an autoimmune disorder which she suspects ADL (I'm having my genetics done), dysautonomia, venous insufficiency. She said I have thousands of lipomas and fibrosis from broken small vessels which are leaking their contents causing the fibrosis and lipomas. I was diagnosed with Mast Cell Activation Syndrome a year ago, and that is what's causing the inflammation within my small vessels causing them to break open. Also recently found by a good internist, I had a prior septal infarct, polycythemia, and a suspicious lung nodule. Good times! 🙂 I'm taking the supplements suggested by Dr. Herbst, starting a keto diet, and have appointment with a vascular surgeon. Good luck to you and everyone on this journey! https://www.advancedlipedematreatment.com/

@slhayton, you can search the database of clinical trials here: https://clinicaltrials.gov/

To find clinical trials at Mayo Clinic use this site: https://www.mayo.edu/research/clinical-trials

If you have general questions regarding research at Mayo Clinic or would like assistance searching for clinical studies that match your interests, please contact:

Non-cancer clinical studies questions
Phone: 800-664-4542 (toll-free). This number is answered from 8 a.m. to 5 p.m. CST, Monday through Friday.