Article: The Corinne - Dr. Peterson Chronicles: Followup #2 (Sept 2010)

You can view the page at http://forums.aboutmecfs.org/content.php?357-The-Corinne-Dr.-Peterson-Chronicles-Followup-CFS-treatment-ME-CFS-antiviral-procrit

 

It's been a slow but upward road for Corinne. It was really clear to me in this post that she had markedly improved. I could tell from how she wrote...how she was unafraid to go on the plane trip....and a general tone of lightness and enthusiasm.

She is still clearly very ill but her quality of life and functionality is up quite a bit. I found it interesting that Dr. Peterson feels she should continue to improve, perhaps dramatically, on the same protocol - the main factor appears to be time.

Of course she can't afford to do everything he wants to her to do in the amounts he wants.....

 

Thanks for the report! I'm curious what he thinks about XMRV at this point..? Also, what did he think was causing your IL-8 to be high and how common that is in his patients. Mine is high and I can never get an answer to why. Glad IVIG works for you. I tried it and it had very weird effects on me and didn't cause any improvement.

 

Lovely to hear - thanks Cort. Would that we could have Dr Peterson here too.

 

Hey Peterson would be a great interview! He's never been very public (although he's very good in public!)...I'll give him a try...

 

thanks, corrine! can you tell us if you or Dr. P thinks the procrit (sp?) is contributing to yr remarkable recovery?

 

The very first prescription Dr P gave me to try was the Procrit...and as he handed it to me he said "try this and don't expect to notice anything". So my feeling is that the Procrit may not make that much of a noticeable difference, however he emphasized the fact that he wants to maintain my hematocrit in the low to mid forty's range and that is what it is doing. How that translates to improvement, I don't know, but I imagine more RBC's can't hurt!

 

I have read that high IL-8 is common. Mine has been high since I visited the first time in June 2009. I believe it's just part of the dysfunctional immune system...you know....elevated in some areas and depressed in others (as I have almost no NK function) because of the viral load? or XMRV? That is why he was interested in testing me again, after he believed he had lowered the viral load.....however it is still high. I believe he may be considering immune modulation now....just my guess.

 

Hi Corrine,

Congratulations!

I have just started seeing Dr. De Meirleir in Brussels and he is using the same probiotic VSL #3.

Also, I had my inflammatory cytokines tested at VIPdx and the only one which was high was IL8--which was 42. From others, I understand that this is not very high. Do you mind telling me what range your IL8 is? (Maybe it is in your attachment but the link won't work for me)

I am XMRV + by culture and am beginning treatment with GcMAF. I have taken LDN for a year and a half. Has Dr. Peterson ever commented on GcMAF?

Again, congrats on all the improvements! It encourages us all.

Sushi

 

Corrine do you remember your IgG levels for herpesviruses? I would love to find out what they were.

 

my IL-8 was almost 2000

 

corinne.
thanks for posting..glad to see you're improving.
I always used to think we should be getting EPO..isn't that what the Tour de France bicyclists dope with? Procrit would be the legit version, I assume.
Intrigued by your FreAmine IVs. I tried 24 of these and saw no improvement...my AAs were still low on a UAA & the arginine exacerbated my herpes virus infections.
You may not have had that problem since you are on Valtrex.
BTW, have your EBV titers come down on Valtrex.
Thanks & to your continued success.

 

Corinne,

Thank you for posting your excellent Chronicles, having all those tests, and asking "all" of those questions!

You mentioned having a blood volume test, do you have low blood volume hence the IV saline and Procrit? Did you have increased pressure on your spinal tap by any chance?

So glad you're improving, it's wonderful!

 

My IL-8 has been as high as 8000. Right now I hovering around 860.

 

My IL-8 has been as high as 8000. Right now I hovering around 860.

Have you noticed any difference in your health as your levels came down?

 

ldnhunter, what did you do to bring it down?

 

to sushi

my IL-8 is 438!!!!1

 

Corinne,

Thank you for posting your excellent Chronicles, having all those tests, and asking "all" of those questions!

You mentioned having a blood volume test, do you have low blood volume hence the IV saline and Procrit? Did you have increased pressure on your spinal tap by any chance?

So glad you're improving, it's wonderful!

yes, Gemini...I had the blood volume test and it was low.
And yes, DrP said my spinal pressure was about 185 or something like that.

 

I had the blood volume test and it was low.
And yes, DrP said my spinal pressure was about 185 or something like that.

Corinne, thanks... so encouraging to hear Dr. P tests for and treats these significant symptoms.

I printed your Chonicles and sent copies to homebound patients who don't have computer access. They wanted me to tell you how helpful your information is and how grateful they are for all you're doing.

 

Thanks Corrine for sharing this information...
I am considering going to see Dr. P, but I need to fill out the forms and
get on the waiting list I guess.

This really helped me!
Hope Love Light

P.S. Keep us posted about your April visit and good luck!