• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Anyone in the Boston area know of a good specialist..

kelly8

Senior Member
Messages
191
Hi
I'm looking for either a primary care or specialist that has helped get to a diagnosis. I've run into a lot of brick walls here and I'm hoping to find an open minded physician.
Thank you!
Kelly
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Dr Wolf in Gloucester, MA diagnosed me, not sure of his 1st name. That was 14 years ago, he was the 2nd infectious disease Dr I saw.

Looking online it appears his 1st name would be Lucas or John. I got a diagnosis, but he offered no Treatment except taking NSAIDS. LOL I do still take them for pain and when I exercise, because I am sure that doing exercise increase my inflammation!

My illness started with Mono. FYI

Have you tried contacting MA CFIDS? https://www.masscfids.org/services

From the Website:

"We at the Massachusetts CFIDS/ME & FM Association understand just how difficult this situation can be. We offer several types of support services.

We can:

  • Assist with patient referrals to healthcare providers
  • Give guidance on disability process and issues—please see the Disability Handbook available on our website
  • Provide information about active support groups or other sources of supportContact Us form or call our Information Line. "

GG

Edit: Not sure he even still Practices, but perhaps if both are still in business, call both offices and see if the Dr ever gives the diagnosis!
 
Last edited:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
He's not a ME/CFS doctor but he is dedicated to fixing patients left out in the cold by conventional medicine. A family member with a complex situation got excellent care from him - Alex Bingham MD at the Rothfeld Center in Waltham. I'm sure he's be willing to pursue any diagnostics or treatment you feel you need.
 

kelly8

Senior Member
Messages
191
He's not a ME/CFS doctor but he is dedicated to fixing patients left out in the cold by conventional medicine. A family member with a complex situation got excellent care from him - Alex Bingham MD at the Rothfeld Center in Waltham. I'm sure he's be willing to pursue any diagnostics or treatment you feel you need.

Thank you @Learner1 . I did look into him. Unfortunately, the last time I checked it was 650 for the first appt with him. I've heard wonderful things about him but we just don't have that kind of extra money. And that didn't include any lab work or supplements :cry:. I've been keeping his info in my planner though and if I can't find a conventional Dr we may have to credit card it up. :nervous:
 

kelly8

Senior Member
Messages
191
For those interested... Dr Anthony komaroff is no longer seeing patients. He is listed as research only according to my Dr. ( I was trying to get a referral..)