1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Corinne at Dr. Peterson #7: Driving Miss (Wilted) Daisy…Chains Required! (March, 2012)

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 16, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,011
    View the Post on the Blog

    View the Post on the Blog
    Last edited by a moderator: Dec 2, 2013
  2. Corinne

    Corinne

    Messages:
    55
    Likes:
    4
    Please feel free to leave questions or comments. It may take me awhile to respond as I will need to find someone to answer thru...don't want to compromise my soon upcoming trip back to Dr. P with head pain and dizziness. Thanks for your patience. :)
    camas likes this.
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    What is going on Vasoactive Intestinal Peptide? Is that something you can take? Are taking anything for that deficiency?
  4. Lynne B

    Lynne B Senior Member

    Messages:
    105
    Likes:
    96
    sydney, australia
    Thanks, both of you, for all the work you've put into this thread. It's very interesting to know how others are faring and it's particularly heartening to hear about all the scientific effort going into uncovering biomarkers, causes and remedies. Please keep it up whenever you can.

    Cheers, Lynne
  5. Corinne

    Corinne

    Messages:
    55
    Likes:
    4
    regarding VIP....my result in March was 51...normal and up from the 16 he considered low. It is something I will ask him about when I see him.
  6. anniekim

    anniekim Senior Member

    Messages:
    588
    Likes:
    193
    U.K
    Wonderful, always love to read about your visits to Dr Peterson, so appreciate you sharing them. i just find it therapeutic to hear of a doctor who leaves no stone unturned and is so focued on our illness, so rare but hopefully the blueprint for the future. Oh to have all that testing;-)

    Also a huge thanks for asking my question about why can using the computer cause cytokine storms. Unfortunately, although I did learn something from Dr Peterson's answer, I probably didn't phrase my question well as what I wanted to know is why does the computer cause a cytokine storm? Is it something to do with EMR? Am still confused and scratching my head but anyway thanks for asking.

    I am sorry you deteriorated after doing better, such experiences are hard to deal with and can pack a real emotional punch. I'm glad you have with the advice and support from friends decided to not try the ivig again until your body has stabilised, sounds a sensible idea.

    I'm also very sorry about your loss of your dear friend, Stephen. it was so kind of you to write a tribute to him. May he rest in peace.

    Good luck for your next visit and, as always, I look forward to reading about it.
  7. Forebearance

    Forebearance Senior Member

    Messages:
    382
    Likes:
    106
    Great Plains, US
    You might want to read Dr. Shoemaker's work with VIP. He figured out that low VIP is a downstream effect of the inflammatory cascade that is happening in our immune systems.

    I think I remember him writing that people who have their VIP tested tend to be very low in it, so the lab has gotten a false idea of what the normal range is.

    Thanks for sharing your visit with Dr. Peterson, Corrine!
    Forbearance
  8. ldhunter

    ldhunter

    Messages:
    26
    Likes:
    5
    Thank you for this great article Corinne and Cort! We have both had similar experiences and I feel like I've re-lived my visits! I do hope to run in to you sometime! :)

    Please take care of yourself and I wish you the best on your upcoming appointment.
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    Hope we see you there :)
  10. Corinne

    Corinne

    Messages:
    55
    Likes:
    4
    Makes sense that the VIP normal standard is abnormally low as even though my number of 16 was considered normal by the lab, Dr P considered it low.

    And I just want to make it clear...it wasn't the IVIg I was hesitant to go back on, it was the SCIg (subcutaneously...not intravenous). I have never had a problem with the IVIg and in fact I was trying desperately to be able to get that at home...which I finally have been able to do!!!. I will get IV number three this week, much to Dr P's approval! I have noticed some improvement with the first two infusions.
    Thanks for all your kind and supportive words. I will be going back next week and hope to meet more of you :)
  11. niall

    niall

    Messages:
    90
    Likes:
    37
    Florida
    Hi Corinne, I have almost completed 9 months on Ampligen. I have a significant increase in my energy level and generally feel better than before treatment began. However, I am of the opinion that the antiviral properties of Ampligen do not target the reactivated herpes viruses very well as I continue to have the sore throat, headache etc. I have seen reports showing no change in antibody levels to HHV6 and Epstein-Barr after six months of Ampligen infusions. I recently learned that Hemispherx is not as strict about the patients in their study receiving other medications after six months on Ampligen. In your experience with Ampligen, have you or any other recipients tried an anti-herpes medication such as Famvir or Zovirax during the last six months of Ampligen treatment?
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,920
    Likes:
    4,882
    Sth Australia
    thanks Cort and Corinne for sharing this. Its always a very interesting read.

    I hope you get back to that bettered base line soon Corinne.
  13. acer2000

    acer2000 Senior Member

    Messages:
    577
    Likes:
    216
    I am curious about this as well. In Dr. petersons opinion, what is making VIP low?
  14. Corinne

    Corinne

    Messages:
    55
    Likes:
    4
    Since I am not on Ampligen ...yet....I can't officially answer this, except that when i asked Dr.P last week if going on Ampligen meant going off anitvirals (I'm on Valtrex and IVIg), he said "Not necessarily."
    merylg and vli like this.
  15. niall

    niall

    Messages:
    90
    Likes:
    37
    Florida
    I guess if one starts Ampligen and in not in the clinical trial then Hemispherx's requirements do not apply and the doctor can prescribe whatever medications he or she thinks is best to augment Ampligen's therapeutic effects. Anyway I had blood drawn on August 6th to check my antibody levels for Epstein-Barr and HHV6. If they are still elevated, Dr. Klimas said she would consult with Dr. Peterson about starting me on Famvir as well.
  16. niall

    niall

    Messages:
    90
    Likes:
    37
    Florida
    Dr. Rey recently told me that she has been successful in putting her patients into viral (herpes) latency using lower dose Famvir or Zovirax. These medications are better tolerated than Valcyte. When latency has been achieved (this takes an extended period of time), then a maintenance dose is given to preserve that condition. I asked Dr. Rey if her patients are able to resume normal life activities and she said, "Yes". This is the best information I have heard since I started seeing Dr. Klimas in 2005.
    merylg likes this.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,837
    Likes:
    5,681
    Albuquerque

See more popular forum discussions.

Share This Page