A much belated (other than a like) thank you to you,
@Sushi,
@halcyon and
@ebethc. Your knowledge is so helpful. I'm picking this ball up again and trying to move steps closer. I have a few questions hopefully you and others can answer. Thank you so much, I greatly appreciate all of you !
Can you get some basic testing for viruses done before making a decision? I ask because, as I understand it, both OMI and Dr. Montoya focus on viruses. Not all of us have a major viral component, so knowing if you fit their focus might be helpful.
Hi,
@Sushi and everyone. I've been encouraged along the lines, and keep reading in the posts to others, that it's important and can make a huge difference seeing an ME/CFS specialist. I was choosing Stanford or OMI because I can probably get a ride there from Southern California (I can't fly due to MCS/angioedema reactions), I have MediCare/MediCal, OMI seems less expensive than other U.S. specialists, and I may have a place to stay up there.
I thought the doctors at Stanford and OMI deal with other aspects of our illness than just the viruses, such as the various ins and outs of ME/CFS, OI, POTS, inflammation, etc. Wouldn't it still be good to see them even if I end up not having other viruses? One for better documentation about anything I have going on especially since my PCP is not doing so, and to have suggestions and their treatment options for any conditions and symptoms I have.
(Side note: I do have enteroviruses. I need to follow up with Dr. Chia to see if he has other options because I can't do equilibrant.)
Can you get some basic testing for viruses done before making a decision? I ask because, as I understand it, both OMI and Dr. Montoya focus on viruses. Not all of us have a major viral component, so knowing if you fit their focus might be helpful.
@ Sushi and anyone else, what tests should I get? These (pink highlighted below) that
@ebethc had done? Other ones?
@Jennifer J - I was tested for the major CFS viruses, and only EBV came back positive... Based on this, I decided to skip Stanford/Montoya. (fyi - I was tested for EBV, CMV, HSV-1, HSV-2, HSV-6).
The problem is that each of the specialists seem to have a main focus, so if you can get basic testing done before "investing" in a specialist, that would likely be helpful. For instance, I don't have any high viral titers (though of course testing may not reflect reality), but I have tested positive for some intracellular infections.
Edit: I also have gut involvement so that is another factor to consider.
I don't think that there is a general recommendation that would work for all.
A couple more questions if you can answer for me,
@Sushi and anyone else, the doctors at Stanford and OMI don't test for intracellular infections? And they don't work with the gut? Are any of the ME/CFS doctors more comprehensive? Thank you!