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.
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.
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.
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, 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.