pre hGH & bGF status; limited supply of CNS

[Guest guest]

Peggy, you asked if I could talk about my level of functioning before the hGH

and bGF treatment, especially since Cheney says on the tape that the most

improved patients were the ones who were closest to healthy when they started. "

Peggy, I don't think I fit Cheney's profile of potential successes very well! I

had plateaued and even gotten a little worse over the last several years. At my

Oct '00 visit, Cheney said I was predominantly phase three, with many elements

of phase two, and some of phase one possibly recurring. In the past he had me at

three or a three/two combo.

But my bike test had gotten worse, I tested positive for myco and HHV6 in early

'00, and had those little white " punctate lesions " show up on an MRI of my

brain. Like everyone, my " window " varied as my boundaries shifted and I kept

putting myself through the push-crash stuff, but in general I had about a three

to four hour window of minimal activity a day. (Not always all at once - an hour

up, rest, another hour up, rest, etc.)

I could not go out two days in a row without crashing - twice a week was doing

well. (Usually only got out for doctors appointments, support group stuff, and

sometimes church.) I slept well and consistently at night, seven to eight hours,

but always required six to eight hours of " couch time " during the day. Resting,

not napping. Watched a lot of TV.

Fatigue was definitely my most profound symptom, then brain fog (neuropsych

testing showed severe short-term memory and processing speed problems.) Pain was

mild compared to a lot of folks - some flu-like aching. Oh yes - I ran a

low-grade fever most of the time for years. Yes, years.

Knowing what he does now, I wonder if Cheney would have even let me do the

program. Of course, we did spend several months doing immune modulation with

Isoprinosine and Formula 560, and the NK test results normalized, so he probably

would have. But I still ran fever through most of the treatment protocol.

Stopped about the time I finished it. :-)

You also asked about mercury detox. Haven't done it. Still have a mouth full of

amalgams. That's next. Cheney said I was too sick to do it earlier. That will

definitely be a topic at my Sept appointment.

You also asked how many years I've been sick. Don't have the usual simple

answer. Three separate sudden flu-like onsets, one full recovery, one 90%

recovery, still working on this third one. I've had three-and-a-half functional

years since 1987. (Functional meaning I could work or go to school full-time.)

Two good years after the first episode, one-and-a-half after the second. I've

been on disability since 1996. (As a student working on a dual masters degree

from '87 to '95, I wasn't eligible to apply.) Thank God that I was able to work

in '94 and '95 and have access to a great disability plan.

To answer your last question, I benefited most from the Mesenchyme (fetal - and

the top seller of the bGFs), the Thymus (adolescent) and CNS (adolescent). Those

three are the ones I'm doing again now in a second round.

You mentioned being interested in the CNS. Couple of things to be aware of. I'm

sure you know there's a very slight risk of Mad Cow, though it's very, very

slight since this company exercises extreme care, and to my knowledge there

haven't been any reported cases in Canada. (To be honest, I'm more than willing

to take even that infinitesimal risk since it can take 10 or more years for it

to manifest, and I'd rather have 10 really great years than three or four

decades of shadow life. Though I certainly understand and honor those who feel

differently. I don't really want to start a thread on these comments!)

There is a limited supply of CNS. You can check with Greg at Women's

International, but a couple of months ago they had the last 100 or so boxes in

existence. The expiration date on those boxes is Dec of this year.

The manufacturer needs an order of at least 600 boxes to do a production run,

and a clinic in California that used to place large orders for the CNS is no

longer in business. Greg was not optimistic about getting an order of 600 boxes

anytime in the near future. So for now there's a limited supply with a Dec '02

expiration date. Just FYI.

Take care. Carol