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ME/CFS Specialists in Seattle, WA State

SSekouB

SSekouB

Senior Member
Messages
1,082
Location
Seattle
Desperate to find anyone who can even point me in the right direction...
Diagnosed with ME, but told frankly by my Primary that I need to find someone who specializes in the disease. He admitted that they do not, and that what help or support they can give is “embarrassingly limited”. He said he doesn’t have anyone in their system he can refer me to, yet wrote a “referral” to whomever I might be able to research and find.
It has been a frustrating 3-years. Does anyone know of doctors, clinics, specialists located in Seattle? The entire State of Washington? Would greatly appreciate recommendations.
 
B

Bander

Messages
40
I live in Seattle and I work with Dr. Matt Davies to deal with my cfs. He is an endocrinologist at Swedish. He is not an expert on cfs, but he believes it exists and he has been very supportive of every experiment I have wanted to pursue. Because he's not an expert, he's not likely to keep up with the latest research ideas, but he's willing to listen when I report to him what I've heard. For example, I mentioned Dr. David Systrom's work with cfs patients who have POTS and mentioned that he has had success with Mestinon and Dr. Davies was willing to have me try Mestinon (which I have found helpful). So even if you don't find a cfs specialist, it's possible you can find a sympathetic doctor who can allow you to direct your own healthcare.
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
That is not the kind of help that I've been getting from my current doctors. This disease is far more complex than Mestinon and though my stage 3 cancer was successfully treated at Swedish, they have been totally inadequate at getting me any help in diagnosing or treating my immunodeficiency, autoimmunity, multiple infections, neurological issues, POTS, MCAS, nutrient deficiencies, mitochondrial dysfunction, hormonal imbalances, etc.

I have had excellent care from a ME/CFS specialist, naturopathic doctors, a mitochondrial specialist, 2 neurologists snd a hematologist, none of whom work for Swedish, PolyClinic, UW, Virginia Mason, Providence, Kaiser, or Overlake.

This disease is complex, and getting proper diagnosis, treatments like IVIG, Valcyte, antibiotics, nutrients, hormones, MCAS meds, POTS meds, and other treatments have brought me from 40% of function 3 years ago to 85% function today.

I filed 2 complaints with Swedish about their bungling ME/CFS care and lying to me and all I got were butt-covering letters from their attorneys.
 
SSekouB

SSekouB

Senior Member
Messages
1,082
Location
Seattle
Bander said:
I live in Seattle and I work with Dr. Matt Davies to deal with my cfs. He is an endocrinologist at Swedish. He is not an expert on cfs, but he believes it exists and he has been very supportive of every experiment I have wanted to pursue. Because he's not an expert, he's not likely to keep up with the latest research ideas, but he's willing to listen when I report to him what I've heard. For example, I mentioned Dr. David Systrom's work with cfs patients who have POTS and mentioned that he has had success with Mestinon and Dr. Davies was willing to have me try Mestinon (which I have found helpful). So even if you don't find a cfs specialist, it's possible you can find a sympathetic doctor who can allow you to direct your own healthcare.
Click to expand...

Thank you so much. This is extremely helpful, not to mention encouraging. I’ve given up hope of finding a “specialist” in the true sense of the word who is local, but a doctor who is sympathetic to the disease and willing to admit he is no expert, is often just as valuable. I appreciate the perspective. You voiced exactly what I’d hoped — that there are doctors in the area who believe ME/CFS is a real thing and are willing to help navigate the unknown.
 
J

Joolie

Messages
5
Learner1 said:
Just saw this, sorry for the delay. None of the large medical systems in Seattle offer any help at alk, but I will PM you @SSekouB
Click to expand...

Would you be willing to PM me as well? I'm here as well and I've gotten to the point I can't keep throwing stuff at the wall and hoping it will stick, I need someone who knows what they're doing and I'm not having any luck finding anyone local. I can't travel very far but if it's someone who can definitely help me, I'll push my limits for that. I'm in Shoreline.
 
J

Jobiska

Messages
4
I am a caregiver for a person who is severely ill. We have found no one in the Seattle metro area that is a specialist in me/cfs. I have complained at UW, Swedish and Evergreen, to no avail. I think Swedish is still sending people with a cfs diagnosis to the psychiatrist. Please post if you find a doctor who can help.
 
F

Foxglove

Messages
82
Learner1 said:
I filed 2 complaints with Swedish about their bungling ME/CFS care and lying to me and all I got were butt-covering letters from their attorneys.
Click to expand...
Just curious, have you tried filing a complaint with the office of the insurance commissioner? Or the state medical board?
 
minimus

minimus

Senior Member
Messages
140
Location
New York, NY
I got a call from the Center for Complex Diseases last week and was told that David Kaufman is going to be relocating to Seattle. Not sure of the timing or if/when he will accept new patients. But if you live in Seattle and can afford him, it might be worth calling his office to get more information and get on his waiting list, since he seems to be well-liked on this forum.
 
SSekouB

SSekouB

Senior Member
Messages
1,082
Location
Seattle
minimus said:
I got a call from the Center for Complex Diseases last week and was told that David Kaufman is going to be relocating to Seattle. Not sure of the timing or if/when he will accept new patients. But if you live in Seattle and can afford him, it might be worth calling his office to get more information and get on his waiting list, since he seems to be well-liked on this forum.
Click to expand...
Thank you so much!! I will look into this.
 
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