Welcome to our community, Kevin!
The best physician to have on your side is a veteran internist or allergist/immunologist with a teaching and/or research appointment in a medical school -- someone who is competent AND compassionate and not afraid to manage a rare-disease patient. I looked up many of the physicians affiliated with the Frederick Regional Health System in and around Frederick and wasn't impressed by what I saw.
If I were you, I would make an appointment with someone affiliated with the Johns Hopkins School of Medicine in Baltimore who is very senior and, though they may not be a right match for you, they would be able to recommend one or another colleague interested in rare diseases, blood disorders, and immunological issues. As a first point of contact, I like the profiles of the following Hopkins internal-medicine physicians: Drs. Eric B. Bass, Daniel Ernest Ford, Craig Evan Pollack, or Gregory Paul Prokopowicz, see https://www.hopkinsmedicine.org/gim/clinical/jhoc.html I also like the profiles of the following Hopkins allergy/immunology physicians: Drs. Antoine Azar and Jody Robert Tversky, see https://www.hopkinsmedicine.org/allergy/interests/ Take information on your medical and hospitalization history with you to the first encounter.
If you haven't done so already, ask your current doctor to send your medical history to, and request a consultation with, Dr. Kirk Druey at NIH/NIAID, so you may visit with him and get his evaluation and best advice. He's the world's leading expert on SCLS, and you are very close to Bethesda, so it would be silly for you not to have him in your corner, as well. His contact information is on the page Community Details, under Tips or Suggestions.
And please fill out your profile page (https://rareshare.org/profiles/dudescls) with as much detail as possible about your medical history. We're still learning a lot from one another.