August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Which expert do I see? Need opinions, please!

Discussion in 'ME/CFS Doctors' started by EMilo, May 27, 2013.

  1. EMilo


    Seattle, WA
    Hi Sabrina,

    Thanks for the link ~ I had not heard of this doctor before... HOWEVER, she costs $400/hour and I've had no income for a year and am just waiting for my savings to run out before I'm on the streets... How do people afford these doctors??

    I know all specialists are going to cost, I guess that's why I would risk spending the last of my money on someone I have read a lot about rather than someone who may not help at all... :cry:
  2. rebar

    rebar Senior Member

    The ones that really matter are the diagnostic ones that can led to treatment.
    an immune panel that can clearly show deficiency and a good viral panel which can show if any are active.
    The blood work I did 4 months ago showed I am dealing with both, immune deficiency and reactivated EBV and HV6.
    This led to my doctor prescribing hizentra, and I will probably start an antiviral, (again). My immune panel function was sufficiently low for my insurance to cover the rather exorbitant cost.
    Valentijn likes this.
  3. Valentijn

    Valentijn Senior Member


    My ND in Seattle has helped quite a bit by ordering labs - you can get them via LabCorps or Quest Diagnosits, etc, with a doctor ordering them (and an ND is a licenced doctor). He's also quite a bit cheaper than $400 since insurance companies usually don't cover NDs anyhow. I'm not completely sure (mom pays my doc bills), but I think it was something like $120 for the first visit lasting over an hour.

    Via the private testing companies you can get literally anything tested. Despite me getting ME in the Netherlands where Q-fever was an endemic cause of identical symptoms, no one bothered to test me for it here - yet I was able to get it tested in the US where Q-fever doesn't even really exist :p There are also labs like European Laboratory of Nutrients (they have a US location too) which do some more specialized/alternative testing.

    And something else you can do without any doctor is get genetic data tested. It's $99 for to test about one million genes. There's also at least one website for interpreting them in an ME/CFS-relevant manner (in addition to the health data provided by 23andme) based on your genetic results.
    WillowJ and SanDiego#1 like this.
  4. SanDiego#1

    SanDiego#1 SanDiego#1

    SouthEast USA

    Elizabeth- Just so you will know Cheney s $750.00 an hour 3 months ago. $10.00 a word for e-mail and $750.00
    for pc or e-mail.. $350.00 or $400.00 as far as I know is reg fee for these Specialists. Someone else may know of someone less expensive.

    My Best to you.

    San Diego #1

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