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!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

The Hammer - Vistide and Dr. Peterson

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Cort, Jul 20, 2009.

  1. Jody

    Jody Senior Member

    Messages:
    4,060
    Likes:
    540
    Canada
    Ross,

    That's wonderful news that you're feeling better. I hope you just continue to improve. :)

    hvs, you said you haven't had any bad effects. Any improvement for you?
  2. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    Ross,

    Wow!!! That is impressive. Your numbers have improved greatly... The best part is that you feel better!!!

    I am positive for EBV, CMV, HHV6 and mycoplasma pneumoniae. I may mention this Vistide to Dr. Lerner and see what he thinks.

    I am really excited to see your numbers. That must make you feel great!!

    Thanks for sharing this with me. I really appreciate it... Cindy
  3. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    Vistide

    I just had the one treatment so far, Jody. The day after I received it I happened to feel better than I had for a few weeks (characterized by greater ability too endure being upright), but there's no way I can attribute that to the Vistide.

    It's great to hear your good news, Ross!
  4. Jody

    Jody Senior Member

    Messages:
    4,060
    Likes:
    540
    Canada
    hvs,

    No matter the cause for it I'm still glad you're feeling better even if it's temporary. :)
  5. Jody

    Jody Senior Member

    Messages:
    4,060
    Likes:
    540
    Canada
    Ross,

    I'm hopin' it will continue for you, too. :)
  6. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    Vistide

    No amino acids for me, Ross.

    I'm guessing you're close enough to Incline Village that you didn't want to bother going through the rigamarole of getting set up to do infusion close to home? That's what I'll need to do, now. At least my doctor at home is open-minded and I don't expect any problem there. Fingers crossed.
  7. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    Vistide peregrinations

    Ha, Ross, I told Dr. Peterson just about the same thing: "if you tell me to setting my hair on fire will get me better I'll do it." The consequences of not recovering in the next six months would be losing a career about eight years in the making with NO prospect for other gainful employment to support my family.

    You drove 9 hours? Killer to a guy with your health.

    Yes, I can see why he really wants to administer the infusions himself...the protocol is complicated and the consequences of any mistake could be terrible. Doing a few of his specialized tests in my hometown has proven a huge fiasco with one major mistake that delayed us a long time.

    I am coming from the other side of the country so it's not really a possibility to take my infusions in Incline. I've been keeping my home internist up to date this whole time and this week I will ask her if she is ready and willing to take charge of my vistide treatment. I am optimistic, but maybe she'll be hesitant to take the responsibility. I'll let you know...
  8. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hi everyone

    I have my first appointment with Peterson next week, and I just wanted to check: is he still pretty much pushing ampligen and now vistide, the combination depending on the patient?? As in, does he believe CFS is strictly a viral & immuno-dysfunction disease?

    best,
    joey
  9. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hi ross

    thank you for your response. So do you know if Peterson has a pretty uniform approach to treating CFS: that is, antivirals and/or immunomodulation? If not, what other pathways have you heard of him treating? I would just like to know because if he's only doing antivirals, I would reconsider seeing him.
  10. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    --Excellent: no bad reaction to the medicine from kidneys or liver. We're off to the races.--

    Joey, the great the thing about Peterson is that he assumes nothing about what is making you sick. I saw another doc who will remain nameless who's decided he "knows" what CFS is, and when I didn't fit his preconceived notion exactly, he...well...it just didn't go well.

    Peterson runs 1000 tests because he assumes nothing. He collects tons of data so that he can try to figure out what's going on whether its cancer, malaria, dengue fever, or this crazy syndrome. --Be ready for weeks of tests!

    But, yes, if you are one of the small percentage of people diagnosed with CFS who actually fit the Incline cohort (viral "driver," whatever the original cause), he's not going to recommend CBT...he has lots of experience in going after it aggressively.
  11. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    thanks hvs

    I appreciate the input. I just needed to know that he didn't suffer from tunnel vision like so many other CFS doctor/researchers do. You just confirmed that for me.

    best,
    joey
  12. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    If you're lucky enough to get accepted, indeed, Ross. Man, is he busy. Between his practice, stuff at Whittemore-Peterson, and various appearances he keeps moving. Carole is almost literally running all the time, too.

    I'm sorry to hear that it's been 15 years, Ross. But I'm glad even though this stuff has been resident in you so long the Vistide has really improved your mental clarity and viral loads.
  13. D.L.

    D.L. Guest

    Hammer head shark

    Am delighted to hear this success story & would love to hear about other experiences with Vistide.
    Caveat, you never know until you try whether something will help and if Vistide can provide a big enough bang to cure ME/CFS, seems it's worth a trial.
    A couple of months on Vistide may have slammed my viruses, but I couldn't tolerate the G.I. pain and feel more exhausted than ever. After much deliberation and equivocation, I've concluded I'm not a candidate.
    Hopefully I am an anomaly.
    Keeping my fingers crossed for everyone else! D.L.
  14. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    Ah, too bad D.L.. Did you actually see lowered virus numbers? Which viruses were plaguing you? Hve you been sick a long time like Ross? Was the visitde bothering you or the probednicad? Can we assume that you are seeing Dr. P?

    I'm sorry that you ended up more exhausted. Shoot.

    Is it on to valcyte or valtrex, perhaps?
  15. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
  16. kolowesi

    kolowesi Senior Member

    Messages:
    260
    Likes:
    14
    Central Texas
    Peterson workup

    Hi, Joey,

    Many congratulations on getting through all that!

    I really appreciate your reporting of the small details, the differences in perception. I'm so glad you are better now, and I really appreciate the reminder to be grateful that colors are brighter for me now, too.

    I can't wait to hear about your results. I can't believe they took blood, then had you do the stress test. The most blood I've had is 15 vials, you had almost twice that. I hope you are drinking some V8 today.

    Thank you for the great report and best wishes.

    Kelly
  17. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Vistide

    Wrote this on my blog, but Dr Peterson did make it sound like he only uses AVs in isolated cases these days. Leans toward immuno-modulators like IVGG and ampligen
  18. shiso

    shiso Senior Member

    Messages:
    159
    Likes:
    6
    Thanks Joey

    For generously sharing your experience with your Dr. Peterson appointment.

    I'm in Japan, where treatment options for CFS are paltry (as far as I can tell in the year I've been sick with post-infectious CFS) and am considering/weighing what doctor(s) I might want to try to see in the States, so this info is really helpful. Thanks!

    shiso
  19. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    113
    Rather Concise :)

    Joey for me that was the easiest blog post you've ever written and the bulleted points were particularly good. I can't believe that pic of all those vials of blood. When he reports back it will be fascinating to see what he measured and what he concludes.
  20. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59

See more popular forum discussions.

Share This Page