SOC
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Today I saw the kind of doctor (a hematologist/oncologist) every doctor should be -- a true professional. He looked at my labs, thought about the big picture, asked intelligent questions, listened to my answers, decided to do some reading about ME and call my specialist to find out more about it. He didn't try to sort out my problem in 8 minutes, but spent an hour going over my history and medical records.
When he asked about the Valcyte and Valtrex, I told him (with some trepidation) that I had trouble keeping EBV and HHV6 suppressed. Instead of giving me all that irrelevant crap about healthy people and herpesviruses -- everybody has them so they don't mean anything, healthy people can have high titres so they're meaningless -- he said, "Well, I'm not surprised given the state of your immune system."
Thank you! Finally someone who can think logically and look at reality!
It was like seeing an ME/CFS specialist. He listened to what I was saying. He believed what I told him, and he understood that it made sense because it fit with his professional experience. Not a hint of that "It's all in your imagination" crap. Like my ME/CFS specialist, he was telling me some of the symptoms I was likely to be experiencing (I was). It was that wonderful, "Hey, s/he gets it!" feeling I had the first time I saw Dr Rey.
The best news is that while he can't explain WHY my immunoglobulins and lymphocytes are dropping (he seems to think it might be genetic), he doesn't think it's related to a malignancy based on other labs and clinical presentation.
The other good news is that he says I'm an excellent candidate for IVIG and wants me to have the first infusion in a couple of days. He thinks I'll feel much better with IVIG. This may be a case of the man with a hammer thinks everything's a nail, and without knowledge of ME/CFS he may be overly optimistic about how much improvement I can get, but still, I think I'll feel better generally if I'm not catching everything under the sun and dealing with repeated herpesviral reactivations.
He was also disgusted that my PCPs have been refusing me abx all these years. "Yes," he said, "People like me don't need abx to get over small infections. We're sick a few days and we recover. Abx use is for people like you. You get a small infection and are sick for weeks or months because your immune system can't set up an effective fight. You NEED the help of the abx. That's what they're for." He's putting in my record that I should get abx when I have an infection, and not be told to go home and wait it out anymore. Again, thank you! It's about time! Hopefully no more pneumonia for me.
Now my only worry is that he'll do some reading about ME/CFS on the internet and decide I'm a hypochondriac after all. I did give him the lovely table of recent research that... er... somebody.. made recently, so hopefully that will get him started in the right direction anyway. In any case, he's not going to change his opinion about the IVIG since it was based entirely on my labs which he felt more than justified the treatment.
Hurray for all the good doctors out there -- the ones that understand what being a professional is all about, the ones that believe their profession is about caring for people and helping them improve their health. I can now list two of these true professionals on my healthcare team.
When he asked about the Valcyte and Valtrex, I told him (with some trepidation) that I had trouble keeping EBV and HHV6 suppressed. Instead of giving me all that irrelevant crap about healthy people and herpesviruses -- everybody has them so they don't mean anything, healthy people can have high titres so they're meaningless -- he said, "Well, I'm not surprised given the state of your immune system."
Thank you! Finally someone who can think logically and look at reality! It was like seeing an ME/CFS specialist. He listened to what I was saying. He believed what I told him, and he understood that it made sense because it fit with his professional experience. Not a hint of that "It's all in your imagination" crap. Like my ME/CFS specialist, he was telling me some of the symptoms I was likely to be experiencing (I was). It was that wonderful, "Hey, s/he gets it!" feeling I had the first time I saw Dr Rey.
The best news is that while he can't explain WHY my immunoglobulins and lymphocytes are dropping (he seems to think it might be genetic), he doesn't think it's related to a malignancy based on other labs and clinical presentation.
The other good news is that he says I'm an excellent candidate for IVIG and wants me to have the first infusion in a couple of days. He thinks I'll feel much better with IVIG. This may be a case of the man with a hammer thinks everything's a nail, and without knowledge of ME/CFS he may be overly optimistic about how much improvement I can get, but still, I think I'll feel better generally if I'm not catching everything under the sun and dealing with repeated herpesviral reactivations.
He was also disgusted that my PCPs have been refusing me abx all these years. "Yes," he said, "People like me don't need abx to get over small infections. We're sick a few days and we recover. Abx use is for people like you. You get a small infection and are sick for weeks or months because your immune system can't set up an effective fight. You NEED the help of the abx. That's what they're for." He's putting in my record that I should get abx when I have an infection, and not be told to go home and wait it out anymore. Again, thank you! It's about time! Hopefully no more pneumonia for me.
Now my only worry is that he'll do some reading about ME/CFS on the internet and decide I'm a hypochondriac after all.
I did give him the lovely table of recent research that... er... somebody.. made recently, so hopefully that will get him started in the right direction anyway. In any case, he's not going to change his opinion about the IVIG since it was based entirely on my labs which he felt more than justified the treatment. Hurray for all the good doctors out there -- the ones that understand what being a professional is all about, the ones that believe their profession is about caring for people and helping them improve their health. I can now list two of these true professionals on my healthcare team. 
