Article: A Visit to Dr. Peterson: Part I

Article: Corrines Visit to Dr. Peterson Part I

You can view the page at http://forums.aboutmecfs.org/content.php?11-Corrines-Visit-to-Dr-Peterson-Part-I

 

Thanks Corinne for sharing the first chapter of your epic trip. :Retro smile:I love that they let you leave your RV in the carpark!Looking forward to reading more.Anne.

 

Thank you Corinne for sharing this story. I look forward to reading the rest!

 

Wonderful to read stories like this.

What type of sufferers does he see? Sudden onset only? Severe ones? Those who have had specific lab tests like RNase-L done already? Viral symptoms? Well-documented records and personal story and recommendations?

Thanks.

 

He sees many different patients in the ME/CFS spectrum. He will run about 8k worth of tests and does not seem to have an effective treatment. My consult with Dr Peterson several years ago was a complete waste of time. From recent patient experiences he uses similar treatments as the previous couple years. Thanks

 

Thanks Corinne for posting about your trip. I posted about mine a few months ago, until he told me he wanted me on AZT. I would love to hear where he stands now on treatment for XMRV. And while you're at it, maybe where he stands on XMRV altogether.

Samuel--he does have more expertise with the sudden onset ones. However, he seems to be opening up to the gradual onset because of XMRV and how it can be latent for years and cause slow gradual damage. He will give you the most exhaustive diagnostic work up you've ever received, but I don't know if the information you get is proportionally beneficial to the money you spend, especially if you don't have great insurance.

His treatment: ampligen, interferon for the immune modulators. vistide was the preferred antiviral before XMRV came about.

 

I'm sorry that Mike's treatment didn't go well, but that's not the case for everyone. He was very upfront with us that he might not be able to help. However, he brought both my husband and me back to health. I was a gradual onset case and I had no interesting labs beyond a bad tilt. I had letter from my doctor and my own letter.

 

Great that both you and your husband got some health back Anne! Obviously disappointing for Mike and I think I would be pretty wary of AZT as well...I don't know much about it either but surely you would have to take a very small starting dose?
Anyway, Ross on this forum has done pretty well on Vistide from seeing Doc Peterson so good luck to him!

Anne, if you had a bad tilt test that showed orthostatic intolerance, do you mind sharing what helped you? Lots of folk would be interested I'm sure.
Sorry to hijack here Corrine, but I'm a cheeky blighter at the moment!

 

I wonder how much the initial testing for te first visit would cost- for someone with no insurance at all? (from Canada)- Aslo could you possibly mention how long it too before you got an appointment?I am sure the trailer was very handy for you for the long trip and while there. Thank you for sharing and I am looking forward to part 2 as well. kati:In bed:

 

Was the AZT in regards to Dr. Peterson? I don't think he uses that? He's not doing any antiretrovirals as far as I know. He's actually got a lot of different stuff he does, depending on the labs. As for the OI, treating the CFS seemed to help that. He used Vatrex and IM Gamma Globulin on me (this was several years ago) and has done Vistide on my husband.I think the labs would be incredibly expensive, unfortunately.

 

According to Joey earlier in this thread, Dr Peterson wanted him to start AZT. I'm sure that would be just in his particular case and not general advice! As you say Anne, he treats what he finds. I have a lot of respect for the man, he's been through so much and never given up.
OI is such a difficult problem and I'm glad you've recovered from it.

Now to wait patiently, stop hijacking Corinne's thread and read part 2 when it comes...

 

To be clear, he said if a trial for AZT for XMRV began, he would jump in if he were in my shoes. He was not talking about prescribing it off-label.

 

Hey Tony...Don't think anyone is hijacking her thread, I'm sure she would like as much feedback as possible so she can have a better understanding of the treatment he provides. Also, if she starts a protocol with him, she can converse with others on the same or similar protocols. There is no doubt Dr P is dedicated and Corrine will get the best treatment he has to offer. :victory:

 

Ladybug you can also find the story on my website. I'm having some trouble with the articles pages again but her story will be up here soon - and all the tests she did. http://aboutmecfs.org/Trt/Corinne.aspx

 

Corrine had a strange delay. She tried several years earlier to get in only to find that they somehow lost her application. After she submitted it again she got in pretty quickly but I had the feeling that they may have opened something up for her. There's apparently a pretty long waiting list but when the WPI opens up next year things should go more quickly. Jooey might know more about the wait.

 

Thanks for the AZT clarification Joey.

Hi Mike, I'm with you. I was only referring to my own "hijacking" posts... So slap me with a damp tissue for my sins, lol.

Cheers!

 

Tony...lol Good luck Corrine, sounds like this has been a great experience.

 

Hi, this is Corinne here! This is the first time I've did anything like this. I am so glad you have found this story interesting. I am limited on how much time I can spend on the computer...severe headaches...but let me ask you if you have any questions I can answer so far. I see Cort was kind enough to answer some above. Part III is coming soon. Thank all of you for your encouragement. It means a lot. I am returning for a followup visit in Feb. Wish me luck.

 

Best of luck!