The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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OMI, Dr. Montoya at Stanford, or Both?

Discussion in 'General ME/CFS Discussion' started by Jennifer J, Jan 25, 2016.

  1. Jennifer J

    Jennifer J Senior Member

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    Hi, Everyone.

    If I can make this happen, I will probably only get one shot at getting there.

    Which would you recommend to go to: OMI or Dr. Montoya at Stanford? Or both? And why?

    Thank you so much for any of your experience, knowledge, insight and help.:)
     
  2. halcyon

    halcyon Senior Member

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    I chose Stanford over OMI for several reasons. The big one is that Stanford accepts insurance so the appointment and all the testing was covered. The other reason is that Stanford tests for more viral infections than OMI.

    The downside to Stanford is the wait time. When I was referred back in 2014 the wait was one year just to see a PA. OMI had a far shorter wait time at the time, but I believe they are more popular these days so I'm sure the wait for OMI has increased.
     
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  3. halcyon

    halcyon Senior Member

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    Not what you asked about I know, but being in socal I hope you've also considered trying to see Dr. Chia too.
     
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  4. Sushi

    Sushi Senior Member Albuquerque

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    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.
     
  5. ebethc

    ebethc Senior Member

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    @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)

    @Sushi - I didn't know that OMI is focused on viral CFS, too... If this is true, than they are not for me; I believe the EBV is a secondary problem for me.. Do you recommend anyone else as a CFS specialist?
     
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  6. Sushi

    Sushi Senior Member Albuquerque

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    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.
     
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  7. minkeygirl

    minkeygirl But I Look So Good.

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    @Sushi. Intercellular infections? Like mycoplasma or cpn? Not trying to be personal just wondering for myself and testing. Thanks
     
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  8. Sushi

    Sushi Senior Member Albuquerque

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    Yep, also Bartonella, Lyme....
     
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  9. minkeygirl

    minkeygirl But I Look So Good.

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    @Sushi that's what I thought. Going to ask immuno to test me for all that plus whatever else we can think of when I see him in April. Woohoo I'll be cured!
     
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  10. Jennifer J

    Jennifer J Senior Member

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    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 ! :angel:

    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.)


    @ Sushi and anyone else, what tests should I get? These (pink highlighted below) that @ebethc had done? Other ones?


    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! :hug:
     
  11. halcyon

    halcyon Senior Member

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    I would recommend it if you have positive confirmation of an infection with these viruses. Dr. Chia does use other things, though usually in combination with Equilibrant. He may have some other ideas for you though.

    Here's what Stanford ran on me: HHV-6 PCR QUANT, EBV NUCLEAR ANTIGEN (EBNA) IGG, EBV EARLY ANTIGEN IGG, EBV VIRAL CAPSID ANTIGEN IGM, EBV VIRAL CAPSID ANTIGEN IGG, VZ IGG, MYCOPLASMA IGG/IGM AB, HERPES VIRUS 6 IGG AND IGM AB. I had already previously tested negative for CMV and HSV1/2. Stanford likes to use Focus Diagnostics for these tests. If you had these done elsewhere and went to Stanford they would probably rerun them all on you through Focus. They also re-ran enterovirus serology (I had already seen Dr. Chia before seeing them) though they use the wrong test for coxsackie B.

    I imagine the other testing that they do depends on your individual symptoms and what testing you've already had.
     
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  12. helen1

    helen1 Senior Member

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    Yes OMI tests for CPN for example. And they tested me for SIBO and definitely work with the gut. The only one that might be more comprehensive is DeMeirleir but pretty equal.
     
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  13. Firefly_

    Firefly_ Senior Member

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    They (OMI) also check nk cell function, genetic stuff, hormonal stuff like cortisol and whatnot, thyroid, Lyme and co, and whatever else rings a bell based on your symptoms, then when those labs come in they do even more testing to more deeply pursue what might be going on.
     
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  14. JAH

    JAH Senior Member

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    If you have Medicare/medical, Stanford will be free. Montoya will check cpn, mycoplasma, as well as all herpesviruses. But they are really focused just on that, and they will treat with ant virals and anti inflammatories. If you have POTs, they will refer to another specialist at Stanford. You could get a tilt table test, amongst others. (Again, free!)

    OMI more comprehensive in testing and treatment, like the others have said, SIBO, Lyme, immune function. Suprisingly Montoya doesn't do a lot of immune tests.

    Benefits to both- more sophisticated testing at Stanford, if you have other problems that might require it, but OMI takes a broader approach.

    Good luck, JAH
     
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  15. ebethc

    ebethc Senior Member

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    what are "intracellular infections"? any examples?
     
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  16. helen1

    helen1 Senior Member

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    Bartonella, chlamydia pneumonia, mycobacteria

     
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  17. ebethc

    ebethc Senior Member

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    are those all related to lyme? I believe that Bartonella is... not sure about the others.. thanks
     
  18. helen1

    helen1 Senior Member

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    They're often coinfections of Lyme, so in that sense you could say they're related. But they infect lots of people without Lyme too.
     
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  19. Jennifer J

    Jennifer J Senior Member

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    Hi, @halcyon. Thank you, this is good to know. I was hoping there might be other options for me.

    Thank you for this information, too. It's very helpful especially including the information on Focus Diagnostics. :angel:

    Thank you, @helen1 and @Firefly_ . :) This is very helpful.

    Hi, @JAH. Thank you, thank you, this is very useful information. :thumbsup:

    Wish I still lived in the Bay Area, with so many good doctors up there. I'm also thinking of KDM, too. One time shot for me, if I can pull this off.

    Thank you everyone for your help on this. :hug:
     
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