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    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.

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SF Bay Area Primary Care Doctor Recommendations

maybe some day

Senior Member
Messages
775
Location
West coast
Years ago, I saw a dr. Toth in Concord. I'm not sure what type of insurance he takes, but his practice does deal with CFS / ME. I saw him once or twice, but I couldn't afford to go because I have an HMO.
 

hmnr asg

Senior Member
Messages
558
I live in San Jose and have tried many doctors and they have all been awful! I used to think Stanford must have so many good doctors but they are all pompous a@#holes and have zero bed side manners. Worst of all they try to feign empathy in the most comical ways. It's so clear they are just repeating their training: "Mr X, have I addressed all your concerns?" (this is how my neurologist ends our conversations) to which I want to say : NO! but I have to just walk out of their office having wasted hours waiting and scheduling the appointment. They cash in from my insurance, I get no closer to finding a treatment, or even anyone who is willing to take me seriously.

Anyhoo good luck finding a decent doctor in the bay area. I moved to the bay area from a small town in Canada and my doctor back there was SO much better than any of these fancy stanford/UCSF doctors I have seen over the years.

Sorry I didnt have any suggestions :(
 
Messages
16
Was looking for CFS Docs recently though it turned out Dr. Gordon is still working. In my search, I contacted an old acquaintance who used to run a support group years ago. I think these are doctors who are experienced/sympathetic to CFS rather than specialists and I don't know anything about them, but here are the names she emailed me.
There are Shaw, now in Foster City, Patel in Redwood City, Dr. Green and Dr Harris.
I can try to find out more, but she is not in great shape.
 

Jyoti

Senior Member
Messages
3,373
Hi @Ejw18 . It is like a quest for the holy grail, isn't it? I have a PPO now and thought that might really help me find someone good, but so far, not so much luck. I have an adequate PCP (Hana Holistic) in Berkeley who was at least willing to diagnose me once I put all the facts in front of him. He even offered: you might want to see this great movie called 'Unrest.' I guess I should be grateful he had that much info.... Still, he is constantly suggesting that I try to increase my exercise, so I don't count on him for guidance. He Rxed LDN at my request and made a referral to a cardiologist once I told him that I strongly suspected POTS. It is definitely better than being told to go home and meditate. On the other hand, I see a wonderful doctor named Gabriella Heinsheimer (https://www.genbook.com/bookings/slot/reservation/30148774?category=20418340) .

She is retired and so cannot order or prescribe, but she has a lifetime of working in the trenches. She is an MD with TCM training as well as homeopathic and herbal backgrounds. I see her about once a month (in Richmond, she sees only a few patients a week) and I am reimbursed for a portion of what I pay out of pocket (usually an hour's visit for $125) by my insurance company. She is not an ME/CFS specialist, but she is neither ignorant nor arrogant, and has kept me going, given me hope and helped me through some of the worst times with this illness. She has a breadth of knowledge and a deep store of compassion and those have been more healing for me to date than anything I have received from any other physician. She doesn't have a website or anything--this is a small and very personal practice-- so seeing her for the first time was a shot in the dark for me, but we clicked and it was well worth it. For what it is worth to you.....
 
Messages
16
Thank you all so much for your suggestions. I'm so grateful for this forum where we can all support each other as we navigate through this ridiculous healthcare system.
 

Sing

Senior Member
Messages
1,782
Location
New England
Yeah! I am pretty new in the Bay Area with Medicare coverage and am hoping for some guidance from someone about a good doc. Hit or miss has always been fruitless for me and a drain on time, energy and hope.

Had an excellent primary doctor in Vermont. Found him after years via recommendations. He is no more educated about this illness than others—though is more experienced now—yet smart, kind, responsible and willing to learn—as long as he sees any treatment as sufficiently safe for a patient and justifiable, according to his medical knowledge. He was a pleasure after years of « roaming in the wilderness », including with specialists who should have known more than they did, I thought, when my problems fell across their specialty (neurologists, immunologists, endocrinologists, etc.) But these doctors still only seemed to see those issues in the standard ways within those specialties and not consider and think with the whole symptom picture. To me they didn’t apply the specialized knowledge they had to my overall picture. Mistakes can be made that way, and you hope they won’t be major! Caution is always advisable in these circumstances, I learned, despite my sometimes feeling very willing to take a risk for some improvement.

All the years of having to be « expert » in our own field and condition. It is not fully possible, of course, but what I mean is that there is a need to retain a leadership position and be assertive. If collaboration will work with the doctor, then that seems best to me. And definitely not just simply applying the standard answers to their standard categorizations. There is a regimented, corporate form that the medical field takes which is detrimental to patients, especially those who fall outside the boxes and whose condition has not yet been mapped and formulated for a quick, uniform response.
 
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