Re: Help with Post-exertional Malaise?

[Guest guest]

On Aug 27, 2006, at 7:22 PM, stevenhorr wrote:

> Thanks to the advice from many people on this board, I am about to

> begin self-treatment with Immunopro, SAM-e, and enzymes. I was

> wondering if anyone has had any luck with post-exertional malaise or

> fatigue treatment? Is there anything that anyone has successfully used

> to specifically treat or alleviate that awful depression and brainfog

> that follows exercise? This P.E.M. is the prime symptom from which I

> suffer. Smoking used to help, but I've quit, and I think I need a new

> way to open up the blood vessels in my brain or something...

Steve: Whoa, dude! Slow down!

Yes, many of us have gotten significantly better, with time and

effort. Personally, I've found ways to manage my muscle and joint

pain, allergies, brain fog, and sleep issues to the point where they

are no longer seriously constraining problems (as long as I keep up

the treatment, and don't push too hard). For me, post-exertional

malaise remains the last big hurdle. I think that's a common

experience for many of us who've been at this a long time.

But it's taken me seven years of research, experimentation, dead

ends, rogue doctors, big bills, and frustration to get here. I think

that's a common experience, too.

This list can do a lot to help you avoid the dead ends and big bills;

but you do need to pace yourself, and be very systematic about how

you approach it.

Rule One: Don't start more than one new treatment at a time. Keep a

lab journal or computer diary, noting when you started taking it, how

much you took, when you started noticing changes, and what those

changes were. Also note dosage increases or decreases, progress, and

stop dates (if you decide to stop); as well as best sources (in case

you want to keep taking it, and need to get more).

Avoid adding anything else to your regime until you've spent some

time getting to know that one thing well, have fiddled with the

dosage until you've gotten it right, and are sure about what it is or

isn't doing to you. It could take three days. It could take three

months. But moving on to something else until you really know this

one is a recipe for confusion. If you're taking three new things, and

something goes wrong, it's just a lot harder to sort out which one's

the culprit (or, to complicate things further, maybe it's a bad

interaction?).

ImmunoPro and SAMe are both known to cause devastatingly strong

reactions in some of us. Neither should be taken up lightly. And even

bad reactions to these can tell you very important things about the

specific contours of your disease, so you need to be able to be very

clear about what's happening as you take them. These days, almost

every big setback I have can be traced back to experimental treatment

gone sideways. I'm very respectful of the inherent risks in every new

thing I try, and do my best to minimize them.

Pick one new thing and start with it. You don't say which enzymes

you're taking, but I'd begin there, since they may help you process

the ImmunoPro better. Once you know for sure if they're a) tolerable

and helpful, then move on to the ImmunoPro. In turn, your reaction

to that will tell us a lot about your glutathione status, which has

implications for how well you're likely to tolerate the SAMe.

(Actually, there are a whole series of precursor supplements that may

greatly improve your results with SAMe -- we can discuss those when

you get there.)

Another first-response thing that seems to help a lot of people here

is magnesium, taken in tandem with pyrioxidine B6 (p5p) which is its

co-factor. This is great stuff, cheap and easy, and quite a bit of

bang for many of us.

We'll get you there. But this is a long trek, not a sprint. Take it

easy and careful, and you'll be a lot more likely to get better --

and a lot less likely to damage yourself doing it.

Sara

[Guest guest]

Hi, Steve.

If after trying them, you find that you can't tolerate ImmunoPro or

SAMe, you might give some thought to whether you might have a

methylation cycle block. In any case, as Sara said, I would suggest

doing one thing at a time and also starting at low dose.

Rich

>

> Thanks to the advice from many people on this board, I am about to

> begin self-treatment with Immunopro, SAM-e, and enzymes. I was

> wondering if anyone has had any luck with post-exertional malaise

or

> fatigue treatment? Is there anything that anyone has successfully

used

> to specifically treat or alleviate that awful depression and

brainfog

> that follows exercise? This P.E.M. is the prime symptom from which

I

> suffer. Smoking used to help, but I've quit, and I think I need a

new

> way to open up the blood vessels in my brain or something...

>

> Any advice would be greatly appreciated,

>

> Steve

>

[Guest guest]

Steve: I used to have problems with post-exertional malaise. I did the Dantini

protocol (food allergy testing with resulting food allergy rotation diet~hard at

first but got used to it; Valtrex antiviral medication 1 mg 3 x daily with

Zantac before the am and pm dose to buffer the stomach). I started that in

2003. It took six months before I noticed a difference, and that seventh month

I got more done than I had in two years previously. Watching my diet, getting

rid of wheat and all processed foods really helped with the brain fog. I also

started Recuperation (the formula from Spain that is a powdered blend of

potassium, calcium, magnesium and sodium) Jan 2003. This product not only gave

me back my desire to do things, it gave me the energy to follow through, and got

rid of the post-exertional malaise. I have tried all kinds of supplements, some

with great success, some with no results, and this product I will stay with. I

use the saline formula, used two sachets per day for the 6-8 months (can't

remember exactly), then my body didn't seem to want as much, only one dose per

day. I can remember the first two weeks were strange, with dry, cracked lips

getting used to more salt in my diet, and a few mood swings more than usual,

then wow! I was waking up one hour earlier each day, and my naps were only

20-30 minutes with rest of one hour, rather than a 2-1/2 hour or more nap of

desparate tiredness.

I can still crash if I overdo it, but I can roller skate for two hours and not

feel tired afterwards. I work 5-7 hours at our school cafeteria on my feet on a

cement floor the whole time. I even worked a 11-1/2 hour day this summer and

did NOT crash, even though I was pretty tired for several days afterwards.

In your busy lifestyle (I'm sure it's busy, who's isn't?), make sure you don't

push yourself. Dr. Dantini gives us permission to nap every day (whether it's

at lunch, after work, etc.), he says we HAVE to rest~so I do. I plan my

schedule so there is time to rest, and if I am going to have a busy day or two,

I rest more a few days before and after. Say NO to requests of your time

(unless it's family needs that are required) and someone else will spend the

time and energy so you can rest. This doesn't mean you get to be lazy and not

help around the house. (Forgive my sense of humor~I watched a show where the

husband told everyone not to bother him for the first half-hour after he got

home from work; and this half hour ended up being the whole evening every day.)

Just pace yourself and don't overdo it.

How are you sleeping at night? Are you getting enough sleep/rest time? Are you

dreaming? Are you snoring and waking yourself and your family (if you have one)

up at night (sleep apnea?). I wasn't rested enough for a couple of years; hubby

had sleep apnea, I went through menopause and was waking every hour with hot

flashes; I hurt all the time with Fibromyalgia and couldn't relax, etc. It took

six months of taking Melatonin (a natural way to relax) prescribed by Dr.

Dantini (he recommends 5-10 mg at night until you get rested, then cut back to

3-6 mg, then 1-3 mg per night about 1/2 hour before bedtime, then going to bed

when you feel sleepy).

I rarely get post-exertional malaise, only if I travel and don't get enough

sleep (8-9 hours) and have to sit cramped without getting up and moving around.

Like the time I went to Las Vegas with a friend, spent 10 hours in the car one

day, got 7 hours of sleep, then coming home spent two days of 5 hours in the

car, helped clean the house we stayed at, then got 6 hours of sleep that night

between. I was BITCHY and exhausted. I know not to do that anymore. If we are

traveling, I let everyone know I have to have 8 hours of sleep and lots of

breaks or I can't go. I can't go on tours anymore with the kids at our school

where we live and work, and I miss it but they are way too busy for my health.

You give some and get some.

Hope this helps some, too.

in La Selva Beach CA

Help with Post-exertional Malaise?

Thanks to the advice from many people on this board, I am about to

begin self-treatment with Immunopro, SAM-e, and enzymes. I was

wondering if anyone has had any luck with post-exertional malaise or

fatigue treatment? Is there anything that anyone has successfully used

to specifically treat or alleviate that awful depression and brainfog

that follows exercise? This P.E.M. is the prime symptom from which I

suffer. Smoking used to help, but I've quit, and I think I need a new

way to open up the blood vessels in my brain or something...

Any advice would be greatly appreciated,

Steve

[Guest guest]

Sara: Great advice. You go, girl.

Re: Help with Post-exertional Malaise?

On Aug 27, 2006, at 7:22 PM, stevenhorr wrote:

> Thanks to the advice from many people on this board, I am about to

> begin self-treatment with Immunopro, SAM-e, and enzymes. I was

> wondering if anyone has had any luck with post-exertional malaise or

> fatigue treatment? Is there anything that anyone has successfully used

> to specifically treat or alleviate that awful depression and brainfog

> that follows exercise? This P.E.M. is the prime symptom from which I

> suffer. Smoking used to help, but I've quit, and I think I need a new

> way to open up the blood vessels in my brain or something...

Steve: Whoa, dude! Slow down!

Yes, many of us have gotten significantly better, with time and

effort. Personally, I've found ways to manage my muscle and joint

pain, allergies, brain fog, and sleep issues to the point where they

are no longer seriously constraining problems (as long as I keep up

the treatment, and don't push too hard). For me, post-exertional

malaise remains the last big hurdle. I think that's a common

experience for many of us who've been at this a long time.

But it's taken me seven years of research, experimentation, dead

ends, rogue doctors, big bills, and frustration to get here. I think

that's a common experience, too.

This list can do a lot to help you avoid the dead ends and big bills;

but you do need to pace yourself, and be very systematic about how

you approach it.

Rule One: Don't start more than one new treatment at a time. Keep a

lab journal or computer diary, noting when you started taking it, how

much you took, when you started noticing changes, and what those

changes were. Also note dosage increases or decreases, progress, and

stop dates (if you decide to stop); as well as best sources (in case

you want to keep taking it, and need to get more).

Avoid adding anything else to your regime until you've spent some

time getting to know that one thing well, have fiddled with the

dosage until you've gotten it right, and are sure about what it is or

isn't doing to you. It could take three days. It could take three

months. But moving on to something else until you really know this

one is a recipe for confusion. If you're taking three new things, and

something goes wrong, it's just a lot harder to sort out which one's

the culprit (or, to complicate things further, maybe it's a bad

interaction?).

ImmunoPro and SAMe are both known to cause devastatingly strong

reactions in some of us. Neither should be taken up lightly. And even

bad reactions to these can tell you very important things about the

specific contours of your disease, so you need to be able to be very

clear about what's happening as you take them. These days, almost

every big setback I have can be traced back to experimental treatment

gone sideways. I'm very respectful of the inherent risks in every new

thing I try, and do my best to minimize them.

Pick one new thing and start with it. You don't say which enzymes

you're taking, but I'd begin there, since they may help you process

the ImmunoPro better. Once you know for sure if they're a) tolerable

and helpful, then move on to the ImmunoPro. In turn, your reaction

to that will tell us a lot about your glutathione status, which has

implications for how well you're likely to tolerate the SAMe.

(Actually, there are a whole series of precursor supplements that may

greatly improve your results with SAMe -- we can discuss those when

you get there.)

Another first-response thing that seems to help a lot of people here

is magnesium, taken in tandem with pyrioxidine B6 (p5p) which is its

co-factor. This is great stuff, cheap and easy, and quite a bit of

bang for many of us.

We'll get you there. But this is a long trek, not a sprint. Take it

easy and careful, and you'll be a lot more likely to get better --

and a lot less likely to damage yourself doing it.

Sara

[Guest guest]

Thanks, Sara.

I guess I'll start with the enzymes, check out my reaction, and then

move on to the whey powder. I'm pretty eager to get better, no

doubt! It's been a long haul for me also, and I've made very few

gains over the years. I don't believe I have this cfs/me nearly as

severely as many people here. It's ony after I exercise that I feel

absolutely terrible. Otherwise, I feel pretty good most of the time.

But being unable to exercise is extremely frustrating for me!

What do you mean by: " ImmunoPro and SAMe are both known to cause

devastatingly strong reactions in some of us " ? What kind of possible

reactions should I be looking out for when I start them?

Thanks very much,

Steve

>

> > Thanks to the advice from many people on this board, I am about

to

> > begin self-treatment with Immunopro, SAM-e, and enzymes. I was

> > wondering if anyone has had any luck with post-exertional

malaise or

> > fatigue treatment? Is there anything that anyone has

successfully used

> > to specifically treat or alleviate that awful depression and

brainfog

> > that follows exercise? This P.E.M. is the prime symptom from

which I

> > suffer. Smoking used to help, but I've quit, and I think I need

a new

> > way to open up the blood vessels in my brain or something...

>

> Steve: Whoa, dude! Slow down!

>

> Yes, many of us have gotten significantly better, with time and

> effort. Personally, I've found ways to manage my muscle and joint

> pain, allergies, brain fog, and sleep issues to the point where

they

> are no longer seriously constraining problems (as long as I keep

up

> the treatment, and don't push too hard). For me, post-exertional

> malaise remains the last big hurdle. I think that's a common

> experience for many of us who've been at this a long time.

>

> But it's taken me seven years of research, experimentation, dead

> ends, rogue doctors, big bills, and frustration to get here. I

think

> that's a common experience, too.

>

> This list can do a lot to help you avoid the dead ends and big

bills;

> but you do need to pace yourself, and be very systematic about

how

> you approach it.

>

> Rule One: Don't start more than one new treatment at a time. Keep

a

> lab journal or computer diary, noting when you started taking it,

how

> much you took, when you started noticing changes, and what those

> changes were. Also note dosage increases or decreases, progress,

and

> stop dates (if you decide to stop); as well as best sources (in

case

> you want to keep taking it, and need to get more).

>

> Avoid adding anything else to your regime until you've spent some

> time getting to know that one thing well, have fiddled with the

> dosage until you've gotten it right, and are sure about what it is

or

> isn't doing to you. It could take three days. It could take three

> months. But moving on to something else until you really know

this

> one is a recipe for confusion. If you're taking three new things,

and

> something goes wrong, it's just a lot harder to sort out which

one's

> the culprit (or, to complicate things further, maybe it's a bad

> interaction?).

>

> ImmunoPro and SAMe are both known to cause devastatingly strong

> reactions in some of us. Neither should be taken up lightly. And

even

> bad reactions to these can tell you very important things about

the

> specific contours of your disease, so you need to be able to be

very

> clear about what's happening as you take them. These days, almost

> every big setback I have can be traced back to experimental

treatment

> gone sideways. I'm very respectful of the inherent risks in every

new

> thing I try, and do my best to minimize them.

>

> Pick one new thing and start with it. You don't say which enzymes

> you're taking, but I'd begin there, since they may help you

process

> the ImmunoPro better. Once you know for sure if they're a)

tolerable

> and helpful, then move on to the ImmunoPro. In turn, your

reaction

> to that will tell us a lot about your glutathione status, which

has

> implications for how well you're likely to tolerate the SAMe.

> (Actually, there are a whole series of precursor supplements that

may

> greatly improve your results with SAMe -- we can discuss those

when

> you get there.)

>

> Another first-response thing that seems to help a lot of people

here

> is magnesium, taken in tandem with pyrioxidine B6 (p5p) which is

its

> co-factor. This is great stuff, cheap and easy, and quite a bit

of

> bang for many of us.

>

> We'll get you there. But this is a long trek, not a sprint. Take

it

> easy and careful, and you'll be a lot more likely to get better --

> and a lot less likely to damage yourself doing it.

>

> Sara

>

[Guest guest]

Hi ,

Thanks for your reply.

> How are you sleeping at night? Are you getting enough sleep/rest

time? Are you dreaming?

I do take melatonin from time to time, but generally have decent

sleeps (although I grind my teeth like a madman). The only time I

don't sleep well is if I exercise, in which case I often wake up

feeling like I'm not getting enough oxygen. My brain also

feels " buzzed " after I exercise so that I lay in bed all night,

absolutely exhausted, but I cannot really get into a deep sleep.

It's a terrible feeling.

Perhaps if the new supplements I just splurged on don't do me good,

I'll look into the Recuperation you write of.

Thanks a lot,

Steve

>

> Steve: I used to have problems with post-exertional malaise. I

did the Dantini protocol (food allergy testing with resulting food

allergy rotation diet~hard at first but got used to it; Valtrex

antiviral medication 1 mg 3 x daily with Zantac before the am and pm

dose to buffer the stomach). I started that in 2003. It took six

months before I noticed a difference, and that seventh month I got

more done than I had in two years previously. Watching my diet,

getting rid of wheat and all processed foods really helped with the

brain fog. I also started Recuperation (the formula from Spain that

is a powdered blend of potassium, calcium, magnesium and sodium) Jan

2003. This product not only gave me back my desire to do things, it

gave me the energy to follow through, and got rid of the post-

exertional malaise. I have tried all kinds of supplements, some

with great success, some with no results, and this product I will

stay with. I use the saline formula, used two sachets per day for

the 6-8 months (can't remember exactly), then my body didn't seem to

want as much, only one dose per day. I can remember the first two

weeks were strange, with dry, cracked lips getting used to more salt

in my diet, and a few mood swings more than usual, then wow! I was

waking up one hour earlier each day, and my naps were only 20-30

minutes with rest of one hour, rather than a 2-1/2 hour or more nap

of desparate tiredness.

>

> I can still crash if I overdo it, but I can roller skate for two

hours and not feel tired afterwards. I work 5-7 hours at our school

cafeteria on my feet on a cement floor the whole time. I even

worked a 11-1/2 hour day this summer and did NOT crash, even though

I was pretty tired for several days afterwards.

>

> In your busy lifestyle (I'm sure it's busy, who's isn't?), make

sure you don't push yourself. Dr. Dantini gives us permission to

nap every day (whether it's at lunch, after work, etc.), he says we

HAVE to rest~so I do. I plan my schedule so there is time to rest,

and if I am going to have a busy day or two, I rest more a few days

before and after. Say NO to requests of your time (unless it's

family needs that are required) and someone else will spend the time

and energy so you can rest. This doesn't mean you get to be lazy

and not help around the house. (Forgive my sense of humor~I watched

a show where the husband told everyone not to bother him for the

first half-hour after he got home from work; and this half hour

ended up being the whole evening every day.) Just pace yourself and

don't overdo it.

>

> I rarely get post-exertional malaise, only if I travel and don't

get enough sleep (8-9 hours) and have to sit cramped without getting

up and moving around. Like the time I went to Las Vegas with a

friend, spent 10 hours in the car one day, got 7 hours of sleep,

then coming home spent two days of 5 hours in the car, helped clean

the house we stayed at, then got 6 hours of sleep that night

between. I was BITCHY and exhausted. I know not to do that

anymore. If we are traveling, I let everyone know I have to have 8

hours of sleep and lots of breaks or I can't go. I can't go on

tours anymore with the kids at our school where we live and work,

and I miss it but they are way too busy for my health. You give

some and get some.

>

> Hope this helps some, too.

>

> in La Selva Beach CA

>

[Guest guest]

Sara. I'm a little surprised at your confidence that reading this list will 'get

you there' but I am interested in what your protocol. Do you mind listing it?

Schmidt <schmidtmba@...> wrote: Sara: Great advice. You go,

girl.

Re: Help with Post-exertional Malaise?

On Aug 27, 2006, at 7:22 PM, stevenhorr wrote:

> Thanks to the advice from many people on this board, I am about to

> begin self-treatment with Immunopro, SAM-e, and enzymes. I was

> wondering if anyone has had any luck with post-exertional malaise or

> fatigue treatment? Is there anything that anyone has successfully used

> to specifically treat or alleviate that awful depression and brainfog

> that follows exercise? This P.E.M. is the prime symptom from which I

> suffer. Smoking used to help, but I've quit, and I think I need a new

> way to open up the blood vessels in my brain or something...

Steve: Whoa, dude! Slow down!

Yes, many of us have gotten significantly better, with time and

effort. Personally, I've found ways to manage my muscle and joint

pain, allergies, brain fog, and sleep issues to the point where they

are no longer seriously constraining problems (as long as I keep up

the treatment, and don't push too hard). For me, post-exertional

malaise remains the last big hurdle. I think that's a common

experience for many of us who've been at this a long time.

But it's taken me seven years of research, experimentation, dead

ends, rogue doctors, big bills, and frustration to get here. I think

that's a common experience, too.

This list can do a lot to help you avoid the dead ends and big bills;

but you do need to pace yourself, and be very systematic about how

you approach it.

Rule One: Don't start more than one new treatment at a time. Keep a

lab journal or computer diary, noting when you started taking it, how

much you took, when you started noticing changes, and what those

changes were. Also note dosage increases or decreases, progress, and

stop dates (if you decide to stop); as well as best sources (in case

you want to keep taking it, and need to get more).

Avoid adding anything else to your regime until you've spent some

time getting to know that one thing well, have fiddled with the

dosage until you've gotten it right, and are sure about what it is or

isn't doing to you. It could take three days. It could take three

months. But moving on to something else until you really know this

one is a recipe for confusion. If you're taking three new things, and

something goes wrong, it's just a lot harder to sort out which one's

the culprit (or, to complicate things further, maybe it's a bad

interaction?).

ImmunoPro and SAMe are both known to cause devastatingly strong

reactions in some of us. Neither should be taken up lightly. And even

bad reactions to these can tell you very important things about the

specific contours of your disease, so you need to be able to be very

clear about what's happening as you take them. These days, almost

every big setback I have can be traced back to experimental treatment

gone sideways. I'm very respectful of the inherent risks in every new

thing I try, and do my best to minimize them.

Pick one new thing and start with it. You don't say which enzymes

you're taking, but I'd begin there, since they may help you process

the ImmunoPro better. Once you know for sure if they're a) tolerable

and helpful, then move on to the ImmunoPro. In turn, your reaction

to that will tell us a lot about your glutathione status, which has

implications for how well you're likely to tolerate the SAMe.

(Actually, there are a whole series of precursor supplements that may

greatly improve your results with SAMe -- we can discuss those when

you get there.)

Another first-response thing that seems to help a lot of people here

is magnesium, taken in tandem with pyrioxidine B6 (p5p) which is its

co-factor. This is great stuff, cheap and easy, and quite a bit of

bang for many of us.

We'll get you there. But this is a long trek, not a sprint. Take it

easy and careful, and you'll be a lot more likely to get better --

and a lot less likely to damage yourself doing it.

Sara

[Guest guest]

I would go with Renewpro - a newer Whey protein that I found worked very well. I

did not do will with the older ones.

stevenhorr <sonofdelbert@...> wrote: Thanks, Sara.

I guess I'll start with the enzymes, check out my reaction, and then

move on to the whey powder. I'm pretty eager to get better, no

doubt! It's been a long haul for me also, and I've made very few

gains over the years. I don't believe I have this cfs/me nearly as

severely as many people here. It's ony after I exercise that I feel

absolutely terrible. Otherwise, I feel pretty good most of the time.

But being unable to exercise is extremely frustrating for me!

What do you mean by: " ImmunoPro and SAMe are both known to cause

devastatingly strong reactions in some of us " ? What kind of possible

reactions should I be looking out for when I start them?

Thanks very much,

Steve

>

> > Thanks to the advice from many people on this board, I am about

to

> > begin self-treatment with Immunopro, SAM-e, and enzymes. I was

> > wondering if anyone has had any luck with post-exertional

malaise or

> > fatigue treatment? Is there anything that anyone has

successfully used

> > to specifically treat or alleviate that awful depression and

brainfog

> > that follows exercise? This P.E.M. is the prime symptom from

which I

> > suffer. Smoking used to help, but I've quit, and I think I need

a new

> > way to open up the blood vessels in my brain or something...

>

> Steve: Whoa, dude! Slow down!

>

> Yes, many of us have gotten significantly better, with time and

> effort. Personally, I've found ways to manage my muscle and joint

> pain, allergies, brain fog, and sleep issues to the point where

they

> are no longer seriously constraining problems (as long as I keep

up

> the treatment, and don't push too hard). For me, post-exertional

> malaise remains the last big hurdle. I think that's a common

> experience for many of us who've been at this a long time.

>

> But it's taken me seven years of research, experimentation, dead

> ends, rogue doctors, big bills, and frustration to get here. I

think

> that's a common experience, too.

>

> This list can do a lot to help you avoid the dead ends and big

bills;

> but you do need to pace yourself, and be very systematic about

how

> you approach it.

>

> Rule One: Don't start more than one new treatment at a time. Keep

a

> lab journal or computer diary, noting when you started taking it,

how

> much you took, when you started noticing changes, and what those

> changes were. Also note dosage increases or decreases, progress,

and

> stop dates (if you decide to stop); as well as best sources (in

case

> you want to keep taking it, and need to get more).

>

> Avoid adding anything else to your regime until you've spent some

> time getting to know that one thing well, have fiddled with the

> dosage until you've gotten it right, and are sure about what it is

or

> isn't doing to you. It could take three days. It could take three

> months. But moving on to something else until you really know

this

> one is a recipe for confusion. If you're taking three new things,

and

> something goes wrong, it's just a lot harder to sort out which

one's

> the culprit (or, to complicate things further, maybe it's a bad

> interaction?).

>

> ImmunoPro and SAMe are both known to cause devastatingly strong

> reactions in some of us. Neither should be taken up lightly. And

even

> bad reactions to these can tell you very important things about

the

> specific contours of your disease, so you need to be able to be

very

> clear about what's happening as you take them. These days, almost

> every big setback I have can be traced back to experimental

treatment

> gone sideways. I'm very respectful of the inherent risks in every

new

> thing I try, and do my best to minimize them.

>

> Pick one new thing and start with it. You don't say which enzymes

> you're taking, but I'd begin there, since they may help you

process

> the ImmunoPro better. Once you know for sure if they're a)

tolerable

> and helpful, then move on to the ImmunoPro. In turn, your

reaction

> to that will tell us a lot about your glutathione status, which

has

> implications for how well you're likely to tolerate the SAMe.

> (Actually, there are a whole series of precursor supplements that

may

> greatly improve your results with SAMe -- we can discuss those

when

> you get there.)

>

> Another first-response thing that seems to help a lot of people

here

> is magnesium, taken in tandem with pyrioxidine B6 (p5p) which is

its

> co-factor. This is great stuff, cheap and easy, and quite a bit

of

> bang for many of us.

>

> We'll get you there. But this is a long trek, not a sprint. Take

it

> easy and careful, and you'll be a lot more likely to get better --

> and a lot less likely to damage yourself doing it.

>

> Sara

>

---------------------------------

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

On Aug 28, 2006, at 9:28 AM, cort johnson wrote:

> I would go with Renewpro - a newer Whey protein that I found worked

> very well. I did not do will with the older ones.

>

> stevenhorr <sonofdelbert@...> wrote: Thanks, Sara.

>

> I guess I'll start with the enzymes, check out my reaction, and then

> move on to the whey powder. I'm pretty eager to get better, no

> doubt! It's been a long haul for me also, and I've made very few

> gains over the years. I don't believe I have this cfs/me nearly as

> severely as many people here. It's ony after I exercise that I feel

> absolutely terrible. Otherwise, I feel pretty good most of the time.

> But being unable to exercise is extremely frustrating for me!

>

> What do you mean by: " ImmunoPro and SAMe are both known to cause

> devastatingly strong reactions in some of us " ? What kind of possible

> reactions should I be looking out for when I start them?

You've probably been hearing Rich talk about genetic SNPs and

glutathione. Many of us (according to his working hypothesis, perhaps

even most or all of us) have genetic problems with sulfur metabolism

that prevent us from making glutathione. One group of these issues

makes it hard for us to synthesize the whey proteins in ImmunePro

(and I'm with Cort: try RenewPro first). These folks have a hard time

with it, and find they have setbacks upon trying it.

Another group (which includes me) has problems farther down the

cycle, where SAMe gets metabolized. Since this is one of the last

steps in the chain before glutathione gets made, we can tolerate a

bunch of the precursors. But I can't even clear SAMe. I took it for

about four days last March, and ended up spending three weeks in bed.

We're still sorting out just how common these genetic tweaks are --

but it's clear that they are far more common in us than in most

people. This is why Rich is suggesting genetic testing: it's not

cheap, but it will let you know far more precisely just where you're

likely to encounter trouble, and also where to focus your efforts to

actually do some good. It can be a real time and money saver in the

long run.

Sara

[Guest guest]

On Aug 28, 2006, at 9:27 AM, cort johnson wrote:

> Sara. I'm a little surprised at your confidence that reading this

> list will 'get you there' but I am interested in what your

> protocol. Do you mind listing it?

Let's put it another way: I've found more interesting and potentially

valuable options faster in a little under a year on this list than

I'd found in the ten years beforehand. The power of our collected

knowledge here is very strong, and an incredible asset to anybody

working this through. You want to know about anything -- odds are

good that several folks here have tried it, know the good and the bad

of it, and may have some information that can really help you a)

decide if you're a good candidate and make sure that if you do it,

you do it right.

Yeah, I've also taken some tough rides. SAMe, Recup, and FIR saunas

were the three biggies -- but those were important learning

experiences as well, in no small part because members of this group

helped me interpret (correctly, I might add) what had gone sideways.

The SAMe adventure led to the discovery that I'm missing at least one

or two important P450 enzymes, which in turn explained a lifetime of

agony and frustration with prescription drugs, and also empowers me

to avoid ever having to go through that again in the future (once I

get my genetic tests back this fall -- something I wouldn't have done

without this list or this experiment).

The Recup adventure has in recent weeks led to tests, research, and

conversations with doctors that are pointing me toward some

innovative ways of dealing with my confounding (and also long-

standing) adrenal issues.

The FIR sauna, along with my experiments with GSH (also facilitated

in part by this list), have pointed towards metals and other toxicity

issues that I might not have thought to pursue on my own. One result

is that I'm also looking into biotoxin issues related to my long-

standing mold allergies -- another connection I would never have made

without this list.

And those were three that went BADLY. Other things I've learned about

here that I consider good wins include RenewPro, lipo GSH, coconut

oil, and magnesium/B6. I also found out why the glutathione shots my

doctor was giving me worked -- something he couldn't explain, but

Rich could.

In 23 years, I've never had a resource like this to help me put the

puzzle together. It's just light-years ahead of any other single

source I can think of.

As for my protocol....jeez, it took me over a decade to put that

together. It may take me that long to list it. Here are the high

points, in rough order of discovery:

1. Avoiding push-crash at all costs.

2. Sleep study and CPAP treatment for sleep apnea.

3. Armour Thyroid/DHEA combo to treat Hashimoto's and 's.

4. Big messes of vitamins -- multis, aminos, minerals. There are at

least 40 items on the list.

5. Identification of food allergies, and eventual elimination of soy

from my diet. This ended my FM and much daily tiredness.

6. Bioidentical HRT to replace messed-up reproductive hormones. (This

may be important for male PWCs as well.)

7. GSH/B12/AMP injections, supplemented with lipo GSH on non-

injection days.

8. ProBoost

9. Morning shake with banana, yogurt, organic fruit, RenewPro, and

coconut oil.

That's the oversimplified version. The supplements alone would take

an hour.

Sara

[Guest guest]

Wow, this is all pretty overwhelming. I will stick with the

Immunopro because I just ordered it, the SAMe, and the enzymes from

America. It was expensive and took a month to get here. I live in

South Korea. Getting access to genetic testing my be a little tough

here. Medically, they do things differently in Korea. And, well, the

language barrier...

I'll keep reading the archives on this list, but I feel pretty

intimidated by the volume of information! Thanks for sharing your

experiences.

Steve

> > What do you mean by: " ImmunoPro and SAMe are both known to cause

> > devastatingly strong reactions in some of us " ? What kind of

possible

> > reactions should I be looking out for when I start them?

>

> You've probably been hearing Rich talk about genetic SNPs and

> glutathione. Many of us (according to his working hypothesis,

perhaps

> even most or all of us) have genetic problems with sulfur

metabolism

> that prevent us from making glutathione. One group of these

issues

> makes it hard for us to synthesize the whey proteins in ImmunePro

> (and I'm with Cort: try RenewPro first). These folks have a hard

time

> with it, and find they have setbacks upon trying it.

>

> Another group (which includes me) has problems farther down the

> cycle, where SAMe gets metabolized. Since this is one of the last

> steps in the chain before glutathione gets made, we can tolerate

a

> bunch of the precursors. But I can't even clear SAMe. I took it

for

> about four days last March, and ended up spending three weeks in

bed.

>

> We're still sorting out just how common these genetic tweaks are --

> but it's clear that they are far more common in us than in most

> people. This is why Rich is suggesting genetic testing: it's not

> cheap, but it will let you know far more precisely just where

you're

> likely to encounter trouble, and also where to focus your efforts

to

> actually do some good. It can be a real time and money saver in

the

> long run.

>

> Sara

>

[Guest guest]

On Aug 28, 2006, at 4:20 PM, stevenhorr wrote:

> Wow, this is all pretty overwhelming. I will stick with the

> Immunopro because I just ordered it, the SAMe, and the enzymes from

> America. It was expensive and took a month to get here. I live in

> South Korea. Getting access to genetic testing my be a little tough

> here. Medically, they do things differently in Korea. And, well, the

> language barrier...

I can imagine. I moved from the US to Canada a couple years back, and

am only now finding my feet in this system. Adapting to an Asian

system would be, to say the least, daunting.

The good news is the two tests that several of us have gotten useful

info out of are both doable from a distance. The Yasko panel is a kit

that you send for, with a finger-prick blood test you do to yourself,

then overnight to the lab in a regular FedEx or DHL envelope. The

postage would be high, but much cheaper than airfare <g>, and you

don't need a doctor's involvement at all. You get a book and video

that orient you to the whys and wherefores of the various tests; and

the results come in about 2-3 months along with the doctor's

interpretation and recommendations (you pay extra for this, but it's

probably worth it). This is the one that some of us are using to

correct our methylation blocks.

The other one, the Genovations detox panel, needs to be ordered by

a doctor (a naturopath will do), but otherwise is pretty much the

same thing -- only it's a saliva swab instead of a finger-prick. It

comes back in 2-3 weeks. It's the one that shows how well you detox

stuff like SAMe, metals, and so on.

Sara

[Guest guest]

WOW, Cort!

This is a pretty big statement coming from someone with a large and long endured

multiple chemical sensitivies(MCS) component to their illness. Would you mind

telling us in more specifics about how RenewPro is working so well for you?

Have you had a reduction in MCS symptoms? Every once in a while I talk to

someone with MCS or someone who knows someone with MCS and I never know what to

say to them in support other than to agree that it's mostly organic, not all in

their heads, and that I understand the need for them to avoid literally almost

everything to keep symptoms down as much as possible.

It would be good to finally have confidence in pointing out that there is

something other than avoidance that might really help, like RenewPro.

cort johnson <cortttt@...> wrote:

>

> I would go with Renewpro - a newer Whey protein that I found worked very well.

I did not do will with the older ones.

[Guest guest]

Thanks Sara. Would it be possible for you to direct me to a place

where I could order these tests?

> The good news is the two tests that several of us have gotten

useful

> info out of are both doable from a distance. The Yasko panel is a

kit

> that you send for, with a finger-prick blood test you do to

yourself,

> then overnight to the lab in a regular FedEx or DHL envelope. The

> postage would be high, but much cheaper than airfare <g>, and you

> don't need a doctor's involvement at all. You get a book and

video

> that orient you to the whys and wherefores of the various tests;

and

> the results come in about 2-3 months along with the doctor's

> interpretation and recommendations (you pay extra for this, but

it's

> probably worth it). This is the one that some of us are using to

> correct our methylation blocks.

>

> The other one, the Genovations detox panel, needs to be ordered

by

> a doctor (a naturopath will do), but otherwise is pretty much the

> same thing -- only it's a saliva swab instead of a finger-prick.

It

> comes back in 2-3 weeks. It's the one that shows how well you

detox

> stuff like SAMe, metals, and so on.

>

> Sara

>

[Guest guest]

I am having excellent results with NAET (Energy Medicine Big Time)

for my allergies and this would go for MCS also I believe. This is

what Dr. Devi writes about CFS:

" " " This long-term illness can affect the whole body. It is

characterized by debilitating fatigue and other persistent problems,

such as low-grade fever, sore throat, insomnia or drowsiness,

inability to concentrate, pain in the muscles and joints, enlarged

or painful lymph nodes, general muscle weakness, headaches,

forgetfulness, excessive irritability, confusion, difficulty in

thinking, depression and lack of interest in life. People who suffer

all or some of these symptoms fall into the CFS (Chronic Fatigue

Syndrome) group. This definition of CFS was developed by researchers

and published in the March 1988, " ls of Internal Medicine. "

Previously, this illness was described as a chronic Epstein-Barr

virus or syndrome (CEBV) or chronic mononucleosis. Researchers

decided that the name Chronic Fatigue Syndrome would better reflect

the major symptoms, without suggesting a cause, because no one knows

the cause of CFS.

In my opinion, the major cause of CFS is allergy to: foods, (sugar,

B complex, starches, alcohol, iron, fat amino acid, minerals,

copper, lead, tap water, spices, food additives, food coloring and

hormones), environmental substances (chemicals, wood, formaldehyde,

fabrics, carpets, detergent, newspaper, ink, pesticides, and

cosmetics), infectious agents (bacteria, viruses, parasites, and

pesticides) and emotional factors (divorce, miscarriage, sudden loss

of loved ones, etc.). Some people are allergic to everything,

including their own body secretions (saliva, blood, urine, and

mucus, etc.). We see many patients who were going to CFS clinics for

years with little result. When they are treated for allergies by

NAET, they respond very well. Usually CFS patients need hundreds of

NAET treatments to get back to normal life. Some of our CFS patients

have been treated with two to three office visits per week for three

or four years before they were able to resume a normal life.

A 35-year-old woman had been treated for CFS and EBV and was on

disability for three to four years. In spite of all the treatments

and the good nutrition she was receiving, her problems were getting

worse. She was thoroughly evaluated in our office and was found to

be allergic to almost all foods and fabrics. She was glad to know

that she was suffering from allergies, rather than some incurable

illness. Within a few months or her initial visit she started

showing marked improvement. In her case, most of the allergens

affected her spleen and heart meridians. She had four to six months

of continuous treatment (three to four visits a week) to clear

almost all her allergies. At the end of the period she felt normal

and began to work regularly.

A young woman of 28, who had been treated for EBV for seven years,

was also found to be allergic to foods, external substances, fabrics

and water. In her case she was severely allergic to regular tap

water. She had been on disability for seven years. Her heart,

stomach, spleen, gall bladder and large intestine meridians were

affected. After treatments in our office for almost a year, she was

able to work full time as a teacher. Many mild to moderate cases of

CFS have been treated successfully with NAET.

Genetic predisposition may play a role in CFS just as we see in

cases of allergies. Most CFS patients show inherited sensitivity to

allergies. We are living in an environment of electromagnetic

pollution. All types of energies are bombarding our bodies from all

directions, causing continuous blockages and resulting in a wide

range of psychological and physiological disorders. Present day

electromagnetic pollution may be causing weaknesses in the immune

system. The pangs of immune deficiency diseases would not be felt so

dramatically if patients had stronger immune systems. Allergies

would not affect the body so much. You have to strengthen the immune

system, and strengthen the function of the thymus gland, the spleen,

lymph flow and bone marrow. If you suffer from CFS and other immune

deficiency syndrome ailments, you may be able to fight them

eventually if you make it a point to follow balancing techniques

twice a day.

Electric and computer radiation can cause energy blockages in the

body. We see and treat many people in our office who react to

computer materials and radiation. A 48-year-old male computer

programmer suffered from severe fatigue, frequent headaches,

insomnia, and irritable bowel syndrome for the last 8 years.

Coincidentally, he worked as a computer programmer for 8 years. He

found that he was significantly allergic to computer radiation,

which was affecting all 12 of his meridians. When he was treated

with NAET for radiation and various environmental allergies, he was

able to lead a normal life again. After six years, he still remains

symptom-free. " " "

pp. 438-440 " Say Good-bye to Illness " by Devi S. Nambudripad M.D.,

D.C., L.Ac., Ph.D. (Acu.)

> >

> > I would go with Renewpro - a newer Whey protein that I found

worked very well. I did not do will with the older ones.

>

[Guest guest]

:Hi , I guess you missed my earlier message. I'm afraid that while I found

Renewpro to very effective at raising my energy levels that I ultimately had the

same problem with it that I do with everything else - my energy went up and

then I 'crashed' -became really jittery - and had to stop. This is the story

of my life. So while I certainly think everyone should try Renewpro its going to

have to remain one of those things I turn to occassionally. Of those it will be

near the top of my list. I didnt do well with Immunepro or Immunocal or

whatever it was that I tried several years ago but I really like Renewpro. It

was because of your story that I tried and I'm glad I did even if I cant use it

much.

davidhall2020 <davidhall@...> wrote:

WOW, Cort!

This is a pretty big statement coming from someone with a large and long endured

multiple chemical sensitivies(MCS) component to their illness. Would you mind

telling us in more specifics about how RenewPro is working so well for you?

Have you had a reduction in MCS symptoms? Every once in a while I talk to

someone with MCS or someone who knows someone with MCS and I never know what to

say to them in support other than to agree that it's mostly organic, not all in

their heads, and that I understand the need for them to avoid literally almost

everything to keep symptoms down as much as possible.

It would be good to finally have confidence in pointing out that there is

something other than avoidance that might really help, like RenewPro.

cort johnson <cortttt@...> wrote:

>

> I would go with Renewpro - a newer Whey protein that I found worked very well.

I did not do will with the older ones.

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Hi, Cort.

I see. I've for well over a year now continued with RenewPro use with the same

benefits I've previously mentioned and no setbacks with increased exercise. At

the same time, I have yet to crack the incessant clog and pain symptom on the

right side of my brain, my most troublesome symptoms as a PWC, if you've ready

my recent posts.

Anyway, do you identify with the several PWCs on this list who are finding CBS

SNPs, via the basic Yasko panel, that seems to be why whey products for them are

quite problematic, requiring a different path to improve methylation and

glutathione status? I gather the rough rule of thumb is if you are sensitive to

sulfur products or if you have used nondenatured whey with limited or no success

there is likely a methylation block in this cycle in you that needs unblocking.

cort johnson <cortttt@...> wrote:

>

> :Hi , I guess you missed my earlier message. I'm afraid that while I

found Renewpro to very effective at raising my energy levels that I ultimately

had the same problem with it that I do with everything else - my energy went up

and then I 'crashed' -became really jittery - and had to stop. This is the

story of my life. So while I certainly think everyone should try Renewpro its

going to have to remain one of those things I turn to occassionally. Of those it

will be near the top of my list. I didnt do well with Immunepro or Immunocal

or whatever it was that I tried several years ago but I really like Renewpro. It

was because of your story that I tried and I'm glad I did even if I cant use it

much.

[Guest guest]

I have no idea about the Yasko stuff - my reaction seems to occur purely to

increased energy - I can provoke by doing meditation so I dont think its tied to

any single substance. There certainly is a breakdown somewhere and it does have

to do with energy production. I assume my mitochondria are working okay (?) -

they're able to get me to a nice clean feeling of energy but somehow, somewhere

something goes wrong. Am I releasing toxins?

It would be great to talk to Yasko about this. Cheney really didnt have a clue

- he thought maybe mercury but I KNOW thats not it because I did have increased

mercury due to eating lots of fish and I did have symptoms of mercury poisoning

that were unusual for me (tingling in the fingers, extremeties) but my

'reaction' did not become more prominent. I was rather disenchanted that he did

not figure that one out - I had to point it out to him. He was just going

through his standard ideas without really thinking about them.

He also suggested I to the Genovations detox SNP test. He said 'if we can

identify the short circuit in your detoxification' then we can work around it.'

I said well you know I've tried just about everything - is genovations going to

suggest something I havent tried? He said Genovations has looked all over the

world to come up with ways to combat these things. (They dont do any gene tests

that dont have a treatment for them). I was leery again - but said okay and then

got my tests back and they said eat more fruits and vegetables - take more Vit.

C. I got so upset Cheney almost ended our relationship. I quickly came crawling

back. That got me off on my Cheney rant - that stuff is still ticking away in

there!

Anyway altho Cheney was very familiar with it - he didnt have a clue altho I

must say I ran out of money pretty quickly. That brings up - oh god - another

Cheney rant. About halfway into our time together he mischaracterized my

reaction completely - After flying all the way across the country he said 'Oh

thats just the Herxheimer Effect'. Of course the Herxheimer Effect occurs in

the opposite direction - get worse first then better later. The first thing I

told was - I have one problem - this is it and he couldnt retain it. Of course

he'd just picked up my chart as I walked in. $500 bucks an hour. Of course

there were good times as well.

I have never in 25 years been able to take anything for more than a couple of

weeks. For the first 10-15 years I tried everything and didnt find anything that

made the slightest difference but in the early 90's everything started working -

at least in the short term.

You're not well but you've made alot of progress -why not put together a

little summary of your efforts to date - and what helped and I'll post it on the

website?

CORT

davidhall2020 <davidhall@...> wrote:

Hi, Cort.

I see. I've for well over a year now continued with RenewPro use with the same

benefits I've previously mentioned and no setbacks with increased exercise. At

the same time, I have yet to crack the incessant clog and pain symptom on the

right side of my brain, my most troublesome symptoms as a PWC, if you've ready

my recent posts.

Anyway, do you identify with the several PWCs on this list who are finding CBS

SNPs, via the basic Yasko panel, that seems to be why whey products for them are

quite problematic, requiring a different path to improve methylation and

glutathione status? I gather the rough rule of thumb is if you are sensitive to

sulfur products or if you have used nondenatured whey with limited or no success

there is likely a methylation block in this cycle in you that needs unblocking.

cort johnson <cortttt@...> wrote:

>

> :Hi , I guess you missed my earlier message. I'm afraid that while I

found Renewpro to very effective at raising my energy levels that I ultimately

had the same problem with it that I do with everything else - my energy went up

and then I 'crashed' -became really jittery - and had to stop. This is the story

of my life. So while I certainly think everyone should try Renewpro its going to

have to remain one of those things I turn to occassionally. Of those it will be

near the top of my list. I didnt do well with Immunepro or Immunocal or whatever

it was that I tried several years ago but I really like Renewpro. It was because

of your story that I tried and I'm glad I did even if I cant use it much.

---------------------------------

All-new - Fire up a more powerful email and get things done faster.

[Guest guest]

Hi, Cort.

johnson <cortttt@...> wrote:

>

> I have no idea about the Yasko stuff - my reaction seems to occur purely to

increased energy - I can provoke by doing meditation so I dont think its tied to

any single substance. There certainly is a breakdown somewhere and it does have

to do with energy production. I assume my mitochondria are working okay (?) -

they're able to get me to a nice clean feeling of energy but somehow, somewhere

something goes wrong. Am I releasing toxins?

***Maybe you're a so called " pathological detoxifier " ? Rich mentioned this a

little while back.

***This is where one part of your detox pathway actually works exceptionally

well, but eventually a more than average level of extra-toxic intermedate

metabolites build up because the other part of you detox pathway that is less

than stellar to begin can't keep up with the pace.

***It would be interesting to see your results from the mitochondrial ATP

analysis testing provided by that London lab that does this if not in addition

the basic Yasko SNPs panel.

It would be great to talk to Yasko about this.

***How about snagging a direct interview with her for your monthly newsletter?

You and we who get your newsletter might learn a whole lot more from her, you

never know what might come out of such a thing(You saw the success I produced

with a simple two paragraph email request to the HHV6-Foundation's director to

test lipoceutical glutathione on HHV6, remember simple high leverage actions do

work!)

Cheney really didnt have a clue - he thought maybe mercury but I KNOW thats not

it because I did have increased mercury due to eating lots of fish and I did

have symptoms of mercury poisoning that were unusual for me (tingling in the

fingers, extremeties) but my 'reaction' did not become more prominent. I was

rather disenchanted that he did not figure that one out - I had to point it out

to him. He was just going through his standard ideas without really thinking

about them.

He also suggested I to the Genovations detox SNP test. He said 'if we can

identify the short circuit in your detoxification' then we can work around it.'

I said well you know I've tried just about everything - is genovations going to

suggest something I havent tried?

***Genovations got me to taking Folapro for MTHFR SNP compensation which I

hadn't taken or known about previously and eventually seeing the connection of

about at least five SNPs I have that told me that whey proteins might be worth

revisting though I had tried them before to no avail(nondenatured whey RenewPro

being the the type of whey that finally provided some help).

He said Genovations has looked all over the world to come up with ways to combat

these things. (They dont do any gene tests that dont have a treatment for them).

I was leery again - but said okay and then got my tests back and they said eat

more fruits and vegetables - take more Vit. C. I got so upset Cheney almost

ended our relationship. I quickly came crawling back. That got me off on my

Cheney rant - that stuff is still ticking away in there!

***Let go and let God...Or at least let go! Cheney has his shortcomings like

everyone, though they do unfortunately come, along with his pioneering knowledge

of CFS, at a high hourly rate which many of us have paid, ouch!(I think it's

hard for even the sincerest of doctors treating us to come close to

comprehending the bind we are in for continuous years of coming up with the

money for daily sustinances while so sick let alone the large bills for using

their services, tests and prescriptions with no promise of results).

Anyway altho Cheney was very familiar with it - he didnt have a clue altho I

must say I ran out of money pretty quickly. That brings up - oh god - another

Cheney rant. About halfway into our time together he mischaracterized my

reaction completely - After flying all the way across the country he said 'Oh

thats just the Herxheimer Effect'. Of course the Herxheimer Effect occurs in

the opposite direction - get worse first then better later. The first thing I

told was - I have one problem - this is it and he couldnt retain it. Of course

he'd just picked up my chart as I walked in. $500 bucks an hour. Of course

there were good times as well.

> I have never in 25 years been able to take anything for more than a couple

of weeks. For the first 10-15 years I tried everything and didnt find anything

that made the slightest difference but in the early 90's everything started

working - at least in the short term.

>

> You're not well but you've made alot of progress -why not put together a

little summary of your efforts to date - and what helped and I'll post it on the

website?

***You're welcome to use my remarks as stated at the bottom of message#90019 and

my remarks in a post just previous to this that both cover this. To conclude,

add those comments to mine now that those results have held and that I'm now

readily tolerating an aggressive oral DMPS heavy metal chelation therapy,

because of repleted glutatione from RenewPro use, to help further my

improvement.

>

> CORT

***

> davidhall2020 <davidhall@...> wrote:

if you have used nondenatured whey with limited or no success there is likely a

methylation block in this cycle in you that needs unblocking.

>

>

[Guest guest]

>

>

>

> ***Maybe you're a so called " pathological

> detoxifier " ? Rich mentioned this a little while

> back.

>

>

> ***This is where one part of your detox pathway

> actually works exceptionally well, but eventually a

> more than average level of extra-toxic intermedate

> metabolites build up because the other part of you

> detox pathway that is less than stellar to begin

> can't keep up with the pace.

Could be. Would like to do mito ATP testing and the

Yasko - but cant.

Yasko interview is an idea if shes not too busy. I am

gong to start trying to interview researchers for the

newsletter.

>

'Cheney rant'.....

> ***Let go and let God...Or at least let go!

Good advice!

Congratulations on the Chelation stuff - I know its

been really helpful for several CFS patients. I'll bet

it will work out well.

>

>

> ***You're welcome to use my remarks as stated at the

> bottom of message#90019 and my remarks in a post

> just previous to this that both cover this. To

> conclude, add those comments to mine now that those

> results have held and that I'm now readily

> tolerating an aggressive oral DMPS heavy metal

> chelation therapy, because of repleted glutatione

> from RenewPro use, to help further my improvement.

>

>

> >

> > CORT

>

>

>

> ***

> > davidhall2020 <davidhall@...> wrote:

> if you have used nondenatured whey with limited or

> no success there is likely a methylation block in

> this cycle in you that needs unblocking.

> >

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

>

>

>

> ***Maybe you're a so called " pathological

> detoxifier " ? Rich mentioned this a little while

> back.

>

>

> ***This is where one part of your detox pathway

> actually works exceptionally well, but eventually a

> more than average level of extra-toxic intermedate

> metabolites build up because the other part of you

> detox pathway that is less than stellar to begin

> can't keep up with the pace.

Could be. Would like to do mito ATP testing and the

Yasko - but cant.

Yasko interview is an idea if shes not too busy. I am

gong to start trying to interview researchers for the

newsletter.

>

'Cheney rant'.....

> ***Let go and let God...Or at least let go!

Good advice!

Congratulations on the Chelation stuff - I know its

been really helpful for several CFS patients. I'll bet

it will work out well.

>

>

> ***You're welcome to use my remarks as stated at the

> bottom of message#90019 and my remarks in a post

> just previous to this that both cover this. To

> conclude, add those comments to mine now that those

> results have held and that I'm now readily

> tolerating an aggressive oral DMPS heavy metal

> chelation therapy, because of repleted glutatione

> from RenewPro use, to help further my improvement.

>

>

> >

> > CORT

>

>

>

> ***

> > davidhall2020 <davidhall@...> wrote:

> if you have used nondenatured whey with limited or

> no success there is likely a methylation block in

> this cycle in you that needs unblocking.

> >

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi, Cort.

cort johnson <cortttt@...> wrote:

Would like to do mito ATP testing and the

> Yasko - but cant.

***Got it. There's got to be a way somehow for more PWCs to get access to these

tests as they're some of the most insightful tools we've ever had to date as a

CFS community, better than the RnaseL testing and several others of note

combined!

***I wonder if any of the state or national ME/CFIDS patient organizations has

thought of annually designating a portion of their funds from donations to

covering the top three or four CFS tests available for a handful or so of PWCs

who stick out more than most as needing this boost in their path to getting

well? I wonder if that new Neveda clinic for CFS, with the 11 million dollar

grant, will provide some pro bono servicing of some PWCs in this way?

> Yasko interview is an idea if shes not too busy. I am

> gong to start trying to interview researchers for the

> newsletter.

***This could be quite powerful. These interviews could be the voice of the PWC

community asking some pointed, smart and tough, albeit respectful, questions of

these researchers and give us all a take on how each see's CFS now going into

2007 and how they see the favored hypothesis for CFS by other researcher's

integrating with their own views and if not, why not, specifically.

***Among professional researcher's,

Dr Yasko, Dr Myhill(sp?), Dr Vernon,

Dr DeM, Dr Shoemaker and Dr Cheney would be my top picks to go for at this time.

Also as much as we get and are familiar with Rich's views on this list, having

him respond to questions and on record in your newsletter format could draw out

more that we(and maybe even he) don't now know and perhaps leverage his getting

a spot on a tv panel of people being interviewed about CFS by OPRAH!

***It could happen.

[Guest guest]

Vernon is at CDC. No good can come from there as long as Reeves is in

charge. The era of the CDC being worth anything is long gone.

On 9/5/06, davidhall2020 <davidhall@...> wrote:

>

> ***Among professional researcher's,

> Dr Yasko, Dr Myhill(sp?), Dr Vernon,

> Dr DeM, Dr Shoemaker and Dr Cheney would be my top picks to go for at this

time.

[Guest guest]

Hi Bob,

>>>The era of the CDC being worth anything is long gone.<<<<

Many would agree with you here. However, the era of the CDC's power over our

lives and CFS treatment is far from gone.

Most of the Physicians who we sit in the rooms with to discuss our treatment, or

request tests and prescriptions from...look to the CDC for Official CFS

guidelines. The CDC specifically discourages against any testing for CFS.

Media and Medical Journals that our Doctors read are filled with " CFS " papers

authored by Psychiatrists and Cognitive Behavioralists.

The CDC names and defines conditions for Doctors to consult. The CFS definition

has become increasingly heterogeneous, with ME/CFIDS/CFS barely recognisable.

Yet, still remaining there, as

nothing accurate actually exists

today.

{This is why patients and advocates world wide want the Canadian Case Definition

for ME/CFS adopted}

Many patients do not seem to realize that the CDC's vague or erroneous

information is often what is on our Doctors minds when they respond to us with

that glazed over look in their eyes...dismiss the research we bring them, or the

treatment requests that we make (or they can't run out of the room fast enough).

Katrina

> >

> > ***Among professional researcher's,

> > Dr Yasko, Dr Myhill(sp?), Dr Vernon,

> > Dr DeM, Dr Shoemaker and Dr Cheney would be my top picks to go for at this

time.

>

[Guest guest]

Kat,

Can;t disagree with anythng you siad. Still doens;t change the fact

that CDC isn't; worth a bucket of warm spit.

I donlt think CDC or NIH will ever change - too much loss of face.

The question is how do we get our doctors and everybody else to listen

to somehting else?

- Bob N.

On 9/10/06, kattemayo <kattemayo@...> wrote:

> Hi Bob,

> However, the era of the CDC's power over our lives and CFS treatment is far

from gone.

>

> Most of the Physicians who we sit in the rooms with to discuss our treatment,

or request >tests and prescriptions from...look to the CDC for Official CFS

guidelines. The CDC > > specifically discourages against any testing for CFS.