SOC
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Been through a bad month :In bed:, so please forgive me if I'm not clear or am asking for info already available. I've been trying to read some relevant threads, but the necessary cognitive function isn't there to process it all. :headache:
Neither daughter nor I have had immune function tests. I think that is the next step for us (probably long overdue, actually), but our current specialist doesn't do them. I'd love to see Dr Klimas, but we simply can't afford it. I'm hoping to get some immune function tests done locally and perhaps see if we can get a local immunologist interested enough to try to help. Our local mega medical monopoly has not been at all helpful so far with ME, but if I can convince them to run immune tests we might get somewhere.
What immune tests should I ask for? I'm assuming NK cell function is critical. Is asking for a "NK cell function" test sufficient or do I need to be more specific? Are there any other tests that would be useful in documenting a serious immune problem? We can assume my PCP is completely ignorant about this. My best hope is to freak her out enough with test results to get her to refer us to an immunologist.
What are the best papers/references to convince the PCP that these tests are appropriate? The is a mega medical practice that follows the CDC line slavishly about ME, so they might require convincing that immune tests are appropriate for ME patients.
Wish I didn't feel like crap and could do this research on my own. Seems like this latest setback has affected me in ways others haven't. :sad: While I don't feel fluish, like I have in past relapses, my energy/endurance/stamina has crashed, I need to sleep a lot more, and for some reason I'm having mood issues I've never had before. Those may be related to a large drop in cognitive function. Since most of my cognitive issues had cleared up, losing cognitive function again -- even if it's only temporary -- is perhaps more disturbing than it used to be. A bit too Flowers for Algernon for my taste.
I think this particular relapse has a 3-fold cause -- some sort of GI illness (my GI system is usually like cast iron -- it never gives me problems), followed by a trip to see Dr L (7 hours drive each way. Recently I've been doing fine with it, but this time-- just coming off the GI thing -- was harder), and the flu shot I got at Dr L's office (usually I do okay with them, just a minor increase in symptoms for a week or two).
I'm getting pretty confident we've beat back the HHV-6 and EBV, but I strongly suspect we have immune function problems still to deal with. I'm wondering if my current problem is more immune than viral-related which is why it feels a bit different than previous relapses.
Neither daughter nor I have had immune function tests. I think that is the next step for us (probably long overdue, actually), but our current specialist doesn't do them. I'd love to see Dr Klimas, but we simply can't afford it. I'm hoping to get some immune function tests done locally and perhaps see if we can get a local immunologist interested enough to try to help. Our local mega medical monopoly has not been at all helpful so far with ME, but if I can convince them to run immune tests we might get somewhere.
What immune tests should I ask for? I'm assuming NK cell function is critical. Is asking for a "NK cell function" test sufficient or do I need to be more specific? Are there any other tests that would be useful in documenting a serious immune problem? We can assume my PCP is completely ignorant about this. My best hope is to freak her out enough with test results to get her to refer us to an immunologist.
What are the best papers/references to convince the PCP that these tests are appropriate? The is a mega medical practice that follows the CDC line slavishly about ME, so they might require convincing that immune tests are appropriate for ME patients.
Wish I didn't feel like crap and could do this research on my own. Seems like this latest setback has affected me in ways others haven't. :sad: While I don't feel fluish, like I have in past relapses, my energy/endurance/stamina has crashed, I need to sleep a lot more, and for some reason I'm having mood issues I've never had before. Those may be related to a large drop in cognitive function. Since most of my cognitive issues had cleared up, losing cognitive function again -- even if it's only temporary -- is perhaps more disturbing than it used to be. A bit too Flowers for Algernon for my taste.
I think this particular relapse has a 3-fold cause -- some sort of GI illness (my GI system is usually like cast iron -- it never gives me problems), followed by a trip to see Dr L (7 hours drive each way. Recently I've been doing fine with it, but this time-- just coming off the GI thing -- was harder), and the flu shot I got at Dr L's office (usually I do okay with them, just a minor increase in symptoms for a week or two).
I'm getting pretty confident we've beat back the HHV-6 and EBV, but I strongly suspect we have immune function problems still to deal with. I'm wondering if my current problem is more immune than viral-related which is why it feels a bit different than previous relapses.