Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Referred to Infectious Disease doctor

Discussion in 'General Treatment' started by Zensational, Sep 25, 2015.

  1. Zensational

    Zensational Senior Member

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    Orlando, Florida
    My primary referred me to an Infectious Disease doctor because of my high EVB, CMV, etc results.
    I am wondering if there is any point in going since they will be mainstream medical. If I do go is there anything I should know/expect from anyone who has seen one of these doctors?
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I recently went to one. He knows I got sick after a virus, and have been sick for 20 years, but he reads labs in a conventional way and thinks everyone as exposed.

    He would not rx Valcyte even though my IgM was high because my cmv by pcr was negative.

    He is monitoring me on Valcyte which I get on my own. I am now waiting to find out of he will test CMV HHV6 and EBV next month to see if the Valcyte is helping.

    He also told me to stop Famvir since it "does the same thing" but I chose to stay on it.

    He aid IVIG would maybe help since my immune system is a mess, but that doctor (allergist) is another story so that will wait.

    In hindsight, I fought to see this guy vs some bad ones in my plan. Maybe one of them wouldn't care as much and read the material I brought about Valcyte for CFS.

    I'd say go if it's not a huge burden. at the very least maybe you can get an rx for Famvir. I get mine from my NP.
     
    alkt and Valentijn like this.
  3. Zensational

    Zensational Senior Member

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    Orlando, Florida
    I am reluctant to take any antiviral drugs or any drugs for that matter because my liver is impaired. I am doing alternatives instead. A little progress here and there but nothing to speak of. Recently a friend came to my house and commented that it looked like an apocathary. I told her that I see it differently. I see it as a testament to my willingness to do whatever it takes to be well. She apologized of course. People don't mean to be insensitive but they have no idea what is really going on and I an certainly not going to give it energy by explaining it.
    Whenever I go to a mainstream doctor I am aware of how this disease has fallen through the cracks. I feel like we are pretty much on our own, but I also am much better and getting ready to go to Puerto Vallarta, Mexico for a month.
    I plan of checking out the status of the GCmaf there since some doctors in the US are being killed for giving it.
     
    merylg likes this.
  4. SOC

    SOC Senior Member

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    Natural supplements can also be damaging to the liver. It would be wise to do research on a good scientific source like Natural Medicines Database to check your supplements' impact on your liver. It's also important to check interactions among supplements.

    :eek: Seriously!? Doctors are being KILLED for giving GCmaf? Who is killing them and why? It hardly seems worth killing someone over. o_O
     
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  5. duncan

    duncan Senior Member

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    Is this a reference to the rumor that 11 Holistic doctors were found dead within 90 days, most if not all involving unusual circumstances?

    God, you can't make this shit up. We live in the twilight zone.

    I'm just glad it had nothing to do with Plum Island. :)

    Zensational, not all ID's are disasters. I go to one that is not afraid to deviate from the book, or learn from his patients. Still, odds are against that, I fear. Hopefully, yours will be one of the good ones.
     
    Last edited: Sep 25, 2015
  6. minkeygirl

    minkeygirl But I Look So Good.

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  7. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    :eek: I thought she meant killed as in their careers being killed by losing their license, not killed as in KILLED.
     
  8. Mary

    Mary Forum Support Assistant

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    Southern California
    @minkeygirl - how are you tolerating the Valcyte, and how much are you taking?
     
  9. minkeygirl

    minkeygirl But I Look So Good.

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    @Mary I started out pretty low and am now on 450 mgs with no problems. Which is surprising. I tried 900 mgs but I had horrible abdominal cramping and bloat. I lowered it to 675 and still had the bloat and cramping so I'm holding at 450. I just couldn't deal with that.

    I'm due to get labs next month but I have not heard from the ID about testing CMV, EBV and HHV6. Seems to be you would want to test that to see if it's working so I don't know what his problem is. Oh yea, I don't have any viruses! I'll try to get my PCP to run them (he has before) and then we'll know.
     
  10. Mary

    Mary Forum Support Assistant

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    Thanks! I think it's possible Kaufman may want to give me Valcyte because of high HHV6, but won't know until tomorrow. I think I need to find an ID doctor down here as cannot afford to have Kaufman monitor me, even by phone - way too expensive. But will see what he says tomorrow - maybe my numbers are better than 2 years ago --
     

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