The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Does anyone have any experiences with Dr. Peterson of Incline Village?

Discussion in 'ME/CFS Doctors' started by Lyratic, Oct 3, 2016.

  1. Lyratic

    Lyratic

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    I'm thinking about seeing him, but before I go booking any flights I'd really like to know what this community thinks. Thank you!
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    Have you talked to them about getting an appointment? It used to be really hard to get one.
     
  3. Lyratic

    Lyratic

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    It does take a while, but I'm willing to wait if he's worth it!
     
  4. justy

    justy Donate Advocate Demonstrate

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    I would! There was a long blog sequence by a patient of his a few years back on PR if you or someone can find it.
     
    Jennifer J and Lyratic like this.
  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Do the blog posts come up in the general search, or is there another way to search those?
     
    Lyratic likes this.
  6. Old Bones

    Old Bones Senior Member

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    @Lyratic I may have found the blog sequence @justy was thinking of. I did a search of the forum for: "Corinne Doctor Peterson" and found 15 results. Here are a few links:

    http://forums.phoenixrising.me/inde...tment-and-testing-by-corinne.2031/#post-51037

    http://forums.phoenixrising.me/inde...peterson-chronicles-followup-2-sept-2010.569/

    http://forums.phoenixrising.me/index.php?threads/corinne-at-dr-peterson-7-driving-miss-wilted-daisy…chains-required-march-2012.18494/#post-281070

    These far precede my membership in PR. So, I searched Cort Johnson's website: http://www.healthrising.org/

    Here's what I found -- definitely worth a look:
    http://www.healthrising.org/a-chron...nt-visits-dr-peterson-the-corinne-chronicles/

    "A former athletic trainer, Corinne Blandino, came down with a severe case of chronic fatigue syndrome (ME/CFS) in 1993. Over the past two years Corinne has been detailing her experiences with Dr. Dan Peterson. one of the top ME/CFS physicians/researchers in the world. In her blogs Corinne relates her progress and plies the doctor for information on wide variety of topics."

    All I can say personally is that I saw Doctor Peterson when he made a presentation in my city a few years ago, and was very impressed with his knowledge and understanding.
     
    Last edited: Oct 4, 2016
    Jennifer J, Izola, Lyratic and 4 others like this.
  7. Daffodil

    Daffodil Senior Member

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    @Lyratic i remember you had to write some kind of letter and then wait to see if he wanted to accept you as a patient. i did that once but he rejected me.
     
    justy likes this.
  8. junkcrap50

    junkcrap50 Senior Member

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    I have no experience with him personally, but a person I know does. She told me a lot about her experience as I was considering seeing him.

    First, he takes insurance, which is a pleasant surprise as many CFS doctors don't. Second, he is very thorough with his testing. He orders a large amount of tests which covers a wide range of items. Third, he treats mostly with anti-virals.

    He sits more in the viral-cause camp of CFS and treats a lot of his patients with very strong anti-virals. My friend who saw him and her daughter in law who also saw him, both were on IV antivirals for 3+ months. The drug (can't remember which one) was not covered by insurance and was quite expensive, normally $20,000 per prescription (don't know how many doses or how long a purchase lasts). However, Dr. Peterson tells his patients to shop around various pharmacies for the best price and my friend was able to get hers for $5,000 per prescription. Because the antiviral is IV and incredibly strong, he requires you to live in incline-village for treatment, which is a huge added expense. You have to be followed carefully and get weekly bloodwork. The anti-virals are very toxic and can kill you.

    Despite all this, he seems to have success with it. My friend and her daughter-in-law are nearly entirely recovered/cured. My friend's daughter-in-law was able to finish school and attend an Ivy league college and works a great job. My friend says she's nearly normal except for gut issues. The daughter-in-law however does have to go back every so often for "tune-ups" for maintenance. Though, I think it's more nutritional IVs than anti-virals. With their treatment, my friend did havehigh anti-viral titers, however, so his treatment approach may differ or each patient.

    He does NOT believe mold has any role in CFS as Dr. Niel Nathan and Dr. Joseph Brewer believe. (Disclaimer: I am using the Brewer protocol as I've tested positive for mold mycotoxins.) And Dr. Peterson doesn't seem to waste time with all kinds of nutritional supplements. He may recommend some, but he uses more traditional medicine to help his patients.

    Hope you find this helpful.
     
    ErdemX, Jennifer J, actup and 2 others like this.
  9. Daffodil

    Daffodil Senior Member

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    @junkcrap50 you are probably referring to the drug Vistide. May I ask how long your friends have been feeling well on the drug? Are they still on it or did they feel well after they stopped it as well?

    its interesting that your friend still has gut issues. the specialist I see works on the gut and other bacterial issues

    thanks
     
  10. Daffodil

    Daffodil Senior Member

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    @Lyratic I know some who have seen him....I know of a couple who got well on Ampligen but it is unclear if they stayed well. I know a couple who are still seeing him and have been for decades and are still struggling. I know another who feels that he got worse with Peterson and his IV drugs. I spoke to one man who did very well on Vistide then declined somewhat when he stopped it....and it is unclear how he is now.
    xo
     
  11. Lyratic

    Lyratic

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    Thank you! That's exactly what I was looking for.
     
    Izola likes this.
  12. Lyratic

    Lyratic

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    Thank you! I know his treatments are very expensive, but he does seem very experienced and to get good results!
     
  13. junkcrap50

    junkcrap50 Senior Member

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    I don't remember the drug. It may well have been Vistide. She just recently finished treatment with Dr. Peterson this summer - so a couple months. As far as I know, she's still doing well. Her daughter-in-law saw Dr. Peterson while in high school and she has been out of college for a number of years and is pretty much normal as I know. They both were only on the drug while they were temporarily living in Incline Village, as they needed to be supervised while on it.
     
  14. Daffodil

    Daffodil Senior Member

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    wow. that is very interesting. antivirals didnt work for me and i took them for yrs...even trying the IV toxic one....but I never had very high viral antibody titres. this disease is a true mystery.
     
  15. ebethc

    ebethc Senior Member

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    I think that many ppl have the same symptoms, but arrive at the same place due to different problems... when ppl finally find the culprit(s), they insist that's the problem for everyone..(viruses, methylation, mold, microbiome, hormones, combinations of any of these and on and on). plus, timing is key, and variations on the same protocol/drug/supplement can make a big difference, so I've learned to keep an open mind when it comes to GOING BACK to things I've already tried... ugh... Then you have to find a doctor whose "playbook" is aligned w your symptoms... For me, viruses, gut and mcad are my current focus, so kaufman is a good doctor for me (if the day ever comes that I can afford him!)

    Hang in there, @Daffodil !
     
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  16. GlassHouse

    GlassHouse

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    I applied to see him in late Jan/ early Feb 2016. I've called around once a week and emailed 1-2 times a month to check on the status of the application. As of 9/2/16 my application finally went into his office for review. No word yet on whether he has accepted me.

    So far it's been 10 months and no word on a possible appointment date, but I was expecting a wait. The hardest part is I have a progressive form of the illness and working makes me worse, but I want to hold onto my insurance because Peterson accepts it.

    If I get in I will let you know :) I'm near Sacramento CA, so I really hope I can see him since travel would not be as costly. I'm hoping he'll go for my low NK cell function of 8 LU.

    If you apply to see him, I recommend making 2 copies of all your records just in case his office loses your application (didn't happen to me, but I've heard it has happened to others). That way you can send another without having to find all your tests again.
     
  17. NicholasNYC

    NicholasNYC

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    Thanks, that was very helpful.
     
  18. Hotch

    Hotch Hotch

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    Hi GlassHouse,

    I can not find Dr petersons email address. I live in Australia but am seriously considering going to see him. Hence I have asked my son who lives in Nevada to phone his clinic and ask some info. He said he will ring this week. I would much prefer to contact him myself. Could you please enlighten me of his email address? This would be very much appreciated! I wonder if calling his clinic might hurry things up for you. From what Corinne said she phoned them many many times. I hope you hear soon! It is no fun at all playing the waiting game.

    Cheers, HOTCH
     
    Last edited by a moderator: Nov 6, 2016

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