I quite agree that many doctors have the wrong idea, but writing obs*eniti#s about doctors for saying tests are normal when they are normal does not seem likely to help!!
this is an old thread, but I'm inclined to chime in anyway... I think that part of the frustration is when doctors don't acknowledge their own limitations, what I call the "playbook" .They have a set list of tests that they do and set dx and protocols, and it's all within their own paradigm (rheumatology, immunology, etc.) I don't think that's the problem, though: they seem oblivious to their own inherent limitations, or the fact that a different playbook or paradigm could be helpful, or even significant...
One allergist/immunologist actually said, "Oh, you're just one of those ppl who always has something wrong" .I don't think she meant to be obnoxious; she saw no big red flags in testing and drew a conclusion... I was on a medical leave from work & was not as exhausted as I usually am, so I figured that she was a little misled by my appearance... Sorry I was too coherent & showered! I looked at her in shock and told her, "I'm at the end of the line here, I can't go through life at half mast like this anymore.... on this push-crash cycle that ruins my career" ...I get so tired of trying to figure out what to do next by myself...
I saw Dr Mariana Castells' excellent presentation on vimeo and asked my PCP if she would order the tests recommended by Dr Castells and sure enough they came back indicating mast cell problems ... Why didn't the immunologist think of that when my allergy tests came back negative? (yale trained, stanford residency, so no excuses re training) It's one incremental step, but I'm grateful for any step I can take in the right direction.
She was unaware of the antiviral therapies being used by Montoya & Kaufman down the road in Palo Alto and Mountain View, too. Starting AV's this spring was the only thing that burst my swollen lymph nodes.. It was a breakthrough that i could have had TWO YEARS earlier if she was thinking outside her playbook. Why didn't she tell me to go to a CFS specialist?
This immunologist is just one example that's indicative of a pattern... They could have a little more self- awareness about the inherent limitations of their practices..i.e.,using the playbooks they memorize w/in their own specialties.