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Anyone been to the Whittemore-Peterson Institute in Nevada?

Discussion in 'ME/CFS Doctors' started by Fuschia, Jun 12, 2013.

  1. Fuschia

    Fuschia

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    Looking for info on price/prescriptions/tests. For me, it's a plus that it's a research centre that has an advanced lab, my only concern is.., does that come at the expense of the patient? I'm happy to let all my test results be used for research but I'm a bit worried about less necessary tests (spinal tap!!) being run purely for research purposes. Also if you've been, which specific doctor would you recommend? My history is viral onset four years ago, POTS used to be a problem but not anymore and no other complications, so just need a doctor that's pretty straight down the middle.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Fuschia,

    So they are seeing patients now? What doctors are there--we might know some of them?

    Sushi
  3. Fuschia

    Fuschia

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    I don't actually know if they're taking on patients, I was just having a look around their website. I guess I better find that out first and get back to you!

    F
  4. Ayaju

    Ayaju Senior Member

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    Fuschia ~ If you go this route, I hope you have better luck than I did! I applied (thoroughly; as they require), way back in 2005. I was told it would be a 6 month to a year wait to see Dr. Peterson. Long story short: I never heard from them; even after repeated attempts on my part to inquire 'what up?' through phone calls and letters.Even my doctor at the time wrote a letter to them for me. They completely and totally ignored me. Again, I hope you have better luck than me! Please keep us posted. Judy
  5. Dreambirdie

    Dreambirdie work in progress

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    The WPI fell out of favor with the ME/CFS community of patients due to their unfair treatment of Judy Mikovits, and the resulting fiasco that followed. I'm sure there's plenty of info about that, if you just google it.

    Also, the fact that Harvey Whittemore "a Nevada powerbroker who headed a billion-dollar real estate company and pulled the strings of state politics as a prominent lobbyist for more than a decade was convicted (in May 2013) of making illegal campaign contributions to U.S. Sen. Harry Reid" doesn't help their credibility much either. "Harvey Whittemore, 59, could face up to 15 years in prison and hundreds of thousands of dollars in fines after a federal jury returned guilty verdicts on three counts tied to nearly $150,000 illegally funneled to Reid's re-election campaign in 2007."

    I haven't heard of any patient yet who has had a good experience with WPI. They might exist, but if so, where are they?

    http://www.huffingtonpost.com/2013/05/29/former-nevada-powerbroker_n_3354281.html
    Valentijn and ukxmrv like this.
  6. Ayaju

    Ayaju Senior Member

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    Wow! Didn't have a clue about any of that... time to move out of the cave I've been living in.

    Sounds like I was spared! If you hadn't come along, I'd never have known! I like your avatar a lot.

    Judy
    Dreambirdie likes this.
  7. Dreambirdie

    Dreambirdie work in progress

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    Thanks Ayaju. My avatar is Jung's drawing of Philemon, from his famous RED BOOK.

    Your avatar is pretty cool as well. :thumbsup:
  8. Firestormm

    Firestormm Guest

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    Fuschia

    Meet the Doctors in the Center for Translational Medicine

    Not that I am endorsing them of course. Just for info. :) Also you might like to check their facebook page for any other information. Not that there appears to be very much of actual substance pertaining to prices or treatment protocols.

    It has been a long time since I checked out what they were up to, I must admit. I'm sure they attract patients but it sure would be nice to hear from some - as it always is from others using well-known 'treatment centres'.

    Perhaps you would kindly let us know how you get on should you decide to enroll as a patient with the WPI?

    n.b. Some in the ME community lost interest in WPI because of the Mikovits drama. Some in the ME community lost interest in WPI because of all the XMRV hype. And some didn't. No reason not to follow them up if you feel you want to of course.
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    No clue here, either. I think I would prefer to stay in the cave. We just can't seem to catch a break. :(
  10. Fuschia

    Fuschia

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    Just an update - I've made an appointment for end of September to see Dr Frederiks. I'll let you know how I get on :)
  11. Daffodil

    Daffodil Senior Member

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    hi fuschia. any updates on your appt with dr. frederiks at wpi? i thought the clinic was closed until kdm gets there..?
  12. Charles555nc

    Charles555nc Senior Member

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    Hey Daffodil! Long time no see. Can I ask what meds you are trying currently? Your personal page doesnt have much activity. I was actually thinking about re-trying antiretrovirals because I can tolerate most meds now (Im on my 4th month of continuous Valcyte!). Apparently people dont believe in XMRV anymore (there are still plenty of HERVs that can be causing symptoms)?

    Im on:
    Valcyte 2x a day
    LDN (4.5mg) once a day and twice a day 12 hours apart on the weekends (had another herx when I took it twice a day!)
    300mg doxycycline with food (too much nausea on an empty stomach)
    One scoop of baking soda a day on an empty stomach- do not eat for an hour after (had a herx and clearer head, whatever I have loves acid)

    Diet:
    Low meat consumption, no sodas (huge symptom increase), mostly naked juice brand to drink, salads, and yogurt. Gluten free.

    Various low level vitamins.

    Im at 8/10 if I really watch my diet.
  13. August59

    August59 Daughters High School Graduation

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    Were you taking the Valcyte for XMRV or other viruses, such as CMV or HHV-6? If taking for the CMV or HHV-6 then I would encourage you to keep taking it until your HHV-6 titers drop. Dr. Montoya has had patients that did not see improvement till after 6 months and a couple have been on it for a year and have only made good progress in the last few months. Not sure if he has changed them to something else yet or tapering them down, but I am trying to find out.

    There is a new doctor in Huntersville, NC that specializes in Methylation and Neurosensory Testing - Dr. Tim Jackson
  14. Charles555nc

    Charles555nc Senior Member

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    Valcyte for cmv, hhv6, and epstein barr.
  15. Fuschia

    Fuschia

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    Hi daffodil,

    I'm sorry I forgot to update you all. Basically I cancelled the appointment a while ago because I'd rather hold out for an appointment at Klimas's clinic as there's more info out there about what sort of treatments they do....better the devil you know etc! I'm calling the Florida clinic regularly, they're not taking any new patients still but was told they might have news on that soon.

    f

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