Starting Imunovir

[Guest guest]

Hey, fellow travelers,

Just thought I'd drop by and post on what I'm doing currently. (Aside from the

usual CFS/ME answer, " not much " !)

I saw Dr Klimas last October, and have had one telephone consult with her

since then. She has started me on Rx-Imunovir, which I must order from Canada

since it isn't available in the U.S. Apparently Dr Klimas has permission to

prescribe it, because this isn't an under-the-radar situation, it's just that I

have to send away to a Canadian pharmacy for it.

I started it about two weeks ago, ramping up slowly: 1/2 tablet per day for 3

days, 1 tab/day for 3 days, 2 tabs/day for 3 days, 3 tabs/day for 3 days.

Starting next week I switch to a M-F schedule with weekends off, and will be

alternating weeks between 6 caps/day and 3 caps/day.

My side effects are primarily flu-like, which is usual for me when taking

something that boosts my immune system. More tired, more brain fog, and in

particular more all-over " chills " . My partner said I felt hot at one point, but

my temp by oral thermometer has stayed in my usual low range.

Dr Klimas wants another set of blood tests in ~3 months.

I'm taking 4.5mg low-dose naltrexone (LDN) daily in the evening before bed. I

started this before seeing Dr Klimas, but she thinks that's a good idea and is

having me continue it.

I've cut way back on other pills, to just the ones that seem prudent in a

general sense: multi-vitamin, Omega-3,6,9, SAM-e, vit D3, calcium /magnesium,

ubiquinol, plus some magnesium & potassium drops in juice.

Concentration is difficult, and getting things done is a struggle. I try to

build in happy moments here and there, like ordering flower seeds and thinking

about Spring being only a couple months away.

Oh, and I found out about a month ago that I am XMRV-positive. That doesn't

immediately affect my treatment, but I may wind up participating in a clinical

trial being organized by Dr Ian Lipkin sometime down the road.

Being on the cutting edge of science is kind of interesting; I just wish *I*

wasn't playing the part of the guinea pig!

Best wishes,

Marcia on

in Salem, Massachusetts