Re: Immunopro_post-exertional malaise.... instantly?!

September 26, 2006

Hi Steve -

I'm not an expert (scientist wise) but I'm a 15 yr vet of this disease and I

can tell you that a lot of your symptoms sound to me to be adrenal. I've had

(still do but better) adrenal exhaustion, as this disease depletes your adrenal

reserves.

This is just my hunch, according to your symptoms. What does everyone else

think?

-Wendi

stevenhorr <sonofdelbert@...> wrote:

Hi,

Since I've been on immunopro, I have felt pretty good. However, now

my post-exertional malaise has been more severe and has manifested

faster than ever before. Today, doing a little 5 minute song/dance

routine (extremely mellow!) with my kindergarten students, I got the

PEM within an hour, and it has lasted well into the day. Last week,

at a school picnic, chasing a ball twice made me extremely... dumb

for two entire days, and it manifested quickly, also.

My post-exertional symptoms are almost all cognitive. I get light

headed, dizzy, extremely grouchy, depressed, disoriented, cannot

focus, cannot communicate, cannot move properly, flu-like

exhaustion, extreme sensitivity to light and sound, headache, and

dryness. It used to take awhile to set in, but lately, all it takes

is running for the bus, and I'm paying the price almost instantly,

and for the remainder of the day.

Is this a part of herxheimer? Does this mean the whey is working? Or

am I getting worse for some reason because of it? Has anyone else

had a similar experience?

Anyway, thanks for all the info and prior responses,

Steve

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September 26, 2006

Hi, Steve.

It could be a detox effect for sure, particularly given some of your symptoms

are now

worse. So, it sounds like immunopro is working and that the layers of toxins

and/or

infections are being dealt with in layers, some more or less less troublesome

than others.

It would helpful I think if you got a test done to see if glutathione is getting

repleted, such

as Immuno Sciences Lab's RBC total glutathione test for about $80. If your

glutathione

status has improved, then I think you're a good candidate for adding an

effective chelation

therapy such as DMPS.

Effective chelation requires good detox capacity which boosted glutathione

indicates and

getting rid of your heavy metals stores and infections in this way could do the

trick to help

you eliminate the lingering brain problems.

" stevenhorr " <sonofdelbert@...> wrote:

>

> Hi,

>

> Since I've been on immunopro, I have felt pretty good. However, now

> my post-exertional malaise has been more severe and has manifested

> faster than ever before. Today, doing a little 5 minute song/dance

> routine (extremely mellow!) with my kindergarten students, I got the

> PEM within an hour, and it has lasted well into the day. Last week,

> at a school picnic, chasing a ball twice made me extremely... dumb

> for two entire days, and it manifested quickly, also.

>

> My post-exertional symptoms are almost all cognitive. I get light

> headed, dizzy, extremely grouchy, depressed, disoriented, cannot

> focus, cannot communicate, cannot move properly, flu-like

> exhaustion, extreme sensitivity to light and sound, headache, and

> dryness. It used to take awhile to set in, but lately, all it takes

> is running for the bus, and I'm paying the price almost instantly,

> and for the remainder of the day.

>

> Is this a part of herxheimer? Does this mean the whey is working? Or

> am I getting worse for some reason because of it? Has anyone else

> had a similar experience?

>

> Anyway, thanks for all the info and prior responses,

> Steve

>

September 26, 2006

Hmmm, I wonder if that's why quitting smoking always caused my

symptoms to flare up big time! Smoking probably messes with the

adrenals. Well, you are the second person to suggest the adrenal

thing today. If you, or anyone here, can suggest a way (preferably

without synthetic drugs) that I could address my adrenal problems,

I'd greatly appreciate it.

cheers,

Steve

> Hi,

>

> Since I've been on immunopro, I have felt pretty good. However,

now

> my post-exertional malaise has been more severe and has manifested

> faster than ever before. Today, doing a little 5 minute song/dance

> routine (extremely mellow!) with my kindergarten students, I got

the

> PEM within an hour, and it has lasted well into the day. Last

week,

> at a school picnic, chasing a ball twice made me extremely... dumb

> for two entire days, and it manifested quickly, also.

>

> My post-exertional symptoms are almost all cognitive. I get light

> headed, dizzy, extremely grouchy, depressed, disoriented, cannot

> focus, cannot communicate, cannot move properly, flu-like

> exhaustion, extreme sensitivity to light and sound, headache, and

> dryness. It used to take awhile to set in, but lately, all it

takes

> is running for the bus, and I'm paying the price almost instantly,

> and for the remainder of the day.

>

> Is this a part of herxheimer? Does this mean the whey is working?

Or

> am I getting worse for some reason because of it? Has anyone else

> had a similar experience?

>

> Anyway, thanks for all the info and prior responses,

> Steve

September 26, 2006

On Sep 26, 2006, at 4:11 PM, stevenhorr wrote:

> Hmmm, I wonder if that's why quitting smoking always caused my

> symptoms to flare up big time! Smoking probably messes with the

> adrenals. Well, you are the second person to suggest the adrenal

> thing today. If you, or anyone here, can suggest a way (preferably

> without synthetic drugs) that I could address my adrenal problems,

> I'd greatly appreciate it.

DHEA

DLPA

adrenal support supplements (there are many on the market)

.....and don't discount the value of supplemental cortisone, in the

form of Cortef or Fludricort; or of supplemental testosterone, for

that matter.

If you've got decent insurance, you might ask for a referral to a

good endocrinologist. The adrenals are one of the harder organs to

correct without pharmaceuticals (I know, I've spent years trying),

but a good endo can guide the process so you get the most benefit

from the least amount of hormonal fiddling.

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

And in personal news....

Adrenals are one of my handful of remaining ME-related issues. It's

been greatly complicated by the fact that I seem to be entirely

lacking in the P450 enzymes that clear cortisone from the body --

even topical creams will make me fat, sore, and (most frighteningly)

violent.

However, I seem to have achieved some small success on this front.

Dr. T at the FFC in LA (now, there's a good endo for ya), who tried

me on Cortef last summer and didn't get far, gave me Fludricort for

my OI last month.

The smallest doses of Cortef are 5mg pills, which I split into

quarters and took every other day -- and they were still too much for

me to handle. Fludricort, on the other hand, comes in doses all the

way down to 10 mcg -- tiny tiny tiny doses. On top of that, I'm

quartering these pills, too, and taking them only twice a week. It's

almost like taking none at all.

It seems that we've finally found a dose I can handle. I feel good,

smart, clear, and lean; and there's a slow warming and clearing in my

organs that's similar to the one I experienced for almost a year

after getting on the thyroid meds five years ago.

So it can be done, at least for me.

Sara

September 26, 2006

Steve I'm doing this just now, as my adrenals are quite exhausted. I just did

the DHEA/Cortisol ratio saliva test and will get the results next week.

Meanwhile I'm taking big doses of a bovine extract from NZ called Cortrex. I

believe there are similar in the US. It helps alot. Put it this way, without it,

I crash. I also take 25mg of DHEA. Similar experience, if I reduce the dose or

try to change it around, like the time of day (I take it in the morning with my

thyroid hormones), I crash. I also take lots of supplements, and day before

yesterday had an IV infusion of selenium, vitamin c, magnesium, B, B12, Folate,

glutathione, a mix we've worked out is just right for my body. I won't feel the

real benefits of this for a few days. I also have acupunture, which helps

immensely, though I have to be careful that I don't overdo it after the

treatment when I think I'm doing better than I really am. I drink licorice tea,

have lots of vitamin c powder, and saline - 1 litre of water to 1 level tspn of

organic Celtic sea salt to hydrate.

You must be bushed mate. I don't know how you work at all.

Hope this helps a bit.

Re: Immunopro_post-exertional malaise....

instantly?!

Hmmm, I wonder if that's why quitting smoking always caused my

symptoms to flare up big time! Smoking probably messes with the

adrenals. Well, you are the second person to suggest the adrenal

thing today. If you, or anyone here, can suggest a way (preferably

without synthetic drugs) that I could address my adrenal problems,

I'd greatly appreciate it.

cheers,

Steve

> Hi,

>

> Since I've been on immunopro, I have felt pretty good. However,

now

> my post-exertional malaise has been more severe and has manifested

> faster than ever before. Today, doing a little 5 minute song/dance

> routine (extremely mellow!) with my kindergarten students, I got

the

> PEM within an hour, and it has lasted well into the day. Last

week,

> at a school picnic, chasing a ball twice made me extremely... dumb

> for two entire days, and it manifested quickly, also.

>

> My post-exertional symptoms are almost all cognitive. I get light

> headed, dizzy, extremely grouchy, depressed, disoriented, cannot

> focus, cannot communicate, cannot move properly, flu-like

> exhaustion, extreme sensitivity to light and sound, headache, and

> dryness. It used to take awhile to set in, but lately, all it

takes

> is running for the bus, and I'm paying the price almost instantly,

> and for the remainder of the day.

>

> Is this a part of herxheimer? Does this mean the whey is working?

Or

> am I getting worse for some reason because of it? Has anyone else

> had a similar experience?

>

> Anyway, thanks for all the info and prior responses,

> Steve

September 26, 2006

Hi Steve,

I hate to butt in with information that is not complete or inaccurate

but perhaps this will trigger someone's memory.

I believe that smoking (nicotine that is) is similar to other brain

neurotransmitters (dopamine?, seratonin?, sorry I can't remember

exactly). This is supposedly the reason many people feel stress

relief from smoking when their brain biochemistry is off; because the

nicotine fits in the same size/shape keyhole. Perhaps someone knows

the exact relationship.

Also, regarding Adrenal Fatigue: I have read a very informative book

by Dr. called Adrenal Fatigue - the 21st Century Stress

Syndrome. His website is " http://www.adrenalfatigue.org/ " . I

learned about the problem and the solution (which supplements to

take) in the book (which I currently don't have as I loaned it to

someone). It was written some time ago but it seems like it is based

on scientific fact.

Blessings,

Marti

> > Hi,

> >

> > Since I've been on immunopro, I have felt pretty good. However,

> now

> > my post-exertional malaise has been more severe and has

manifested

> > faster than ever before. Today, doing a little 5 minute

song/dance

> > routine (extremely mellow!) with my kindergarten students, I got

> the

> > PEM within an hour, and it has lasted well into the day. Last

> week,

> > at a school picnic, chasing a ball twice made me extremely...

dumb

> > for two entire days, and it manifested quickly, also.

> >

> > My post-exertional symptoms are almost all cognitive. I get light

> > headed, dizzy, extremely grouchy, depressed, disoriented, cannot

> > focus, cannot communicate, cannot move properly, flu-like

> > exhaustion, extreme sensitivity to light and sound, headache, and

> > dryness. It used to take awhile to set in, but lately, all it

> takes

> > is running for the bus, and I'm paying the price almost

instantly,

> > and for the remainder of the day.

> >

> > Is this a part of herxheimer? Does this mean the whey is working?

> Or

> > am I getting worse for some reason because of it? Has anyone else

> > had a similar experience?

> >

> > Anyway, thanks for all the info and prior responses,

> > Steve

>

September 27, 2006

How long have you been on ImmunePro? It seems lots of people notice

a decrease in effectiveness after some few months of taking it.

>

> Hi,

>

> Since I've been on immunopro, I have felt pretty good. However,

now

> my post-exertional malaise has been more severe and has manifested

> faster than ever before. Today, doing a little 5 minute song/dance

> routine (extremely mellow!) with my kindergarten students, I got

the

> PEM within an hour, and it has lasted well into the day. Last

week,

> at a school picnic, chasing a ball twice made me extremely... dumb

> for two entire days, and it manifested quickly, also.

>

> My post-exertional symptoms are almost all cognitive. I get light

> headed, dizzy, extremely grouchy, depressed, disoriented, cannot

> focus, cannot communicate, cannot move properly, flu-like

> exhaustion, extreme sensitivity to light and sound, headache, and

> dryness. It used to take awhile to set in, but lately, all it

takes

> is running for the bus, and I'm paying the price almost instantly,

> and for the remainder of the day.

>

> Is this a part of herxheimer? Does this mean the whey is working?

Or

> am I getting worse for some reason because of it? Has anyone else

> had a similar experience?

>

> Anyway, thanks for all the info and prior responses,

> Steve

>

September 27, 2006

Hi,

I have only been on the immunopro for about 3.5 weeks, and have

noticed very little difference until this week... it seems like my

symptoms are suddenly become quite a bit worse. I hope it is working,

and I think I'll ride it out for another 3 weeks or so and see if

things get better.

cheers,

Steve

>

> How long have you been on ImmunePro? It seems lots of people notice

> a decrease in effectiveness after some few months of taking it.

September 27, 2006

Thanks, Sara. Good to hear you've found a way to deal with your own

adrenal issues (although it sounds like quite the roller coaster

getting there!). I would like to go get further testing here and

perhaps try and get a prescription for some of these things, but

language barrier is a big obstacle. If I go back to North America,

money for medicine etc becomes an issue, but here, I have the money

and everything medical is really cheap, but it's very hard to get

what I need (and get doctors who understand English, let alone the

complexities of something like CFS, which my last Korean GP told me

was essentially laziness and I just needed to exercise harder!)

I'll keep looking for low risk DHEA/DLPA online, though. I heard

something about licorice a couple of times here...

Thanks sincerely,

Steve

> DHEA

> DLPA

> adrenal support supplements (there are many on the market)

>

> ....and don't discount the value of supplemental cortisone, in

the

> form of Cortef or Fludricort; or of supplemental testosterone,

for

> that matter.

>

> If you've got decent insurance, you might ask for a referral to a

> good endocrinologist. The adrenals are one of the harder organs

to

> correct without pharmaceuticals (I know, I've spent years

trying),

> but a good endo can guide the process so you get the most benefit

> from the least amount of hormonal fiddling.

>

> ----------------

> And in personal news....

>

> Adrenals are one of my handful of remaining ME-related issues.

It's

> been greatly complicated by the fact that I seem to be entirely

> lacking in the P450 enzymes that clear cortisone from the body --

> even topical creams will make me fat, sore, and (most

frighteningly)

> violent.

>

> However, I seem to have achieved some small success on this

front.

> Dr. T at the FFC in LA (now, there's a good endo for ya), who

tried

> me on Cortef last summer and didn't get far, gave me Fludricort

for

> my OI last month.

>

> The smallest doses of Cortef are 5mg pills, which I split into

> quarters and took every other day -- and they were still too much

for

> me to handle. Fludricort, on the other hand, comes in doses all

the

> way down to 10 mcg -- tiny tiny tiny doses. On top of that, I'm

> quartering these pills, too, and taking them only twice a week.

It's

> almost like taking none at all.

>

> It seems that we've finally found a dose I can handle. I feel

good,

> smart, clear, and lean; and there's a slow warming and clearing in

my

> organs that's similar to the one I experienced for almost a year

> after getting on the thyroid meds five years ago.

>

> So it can be done, at least for me.

>

> Sara

>

September 27, 2006

I'm checking the website out right now. Many thanks!

Steve

> Also, regarding Adrenal Fatigue: I have read a very informative

book

> by Dr. called Adrenal Fatigue - the 21st Century Stress

> Syndrome. His website is " http://www.adrenalfatigue.org/ " . I

> learned about the problem and the solution (which supplements to

> take) in the book (which I currently don't have as I loaned it to

> someone). It was written some time ago but it seems like it is

based

> on scientific fact.

>

> Blessings,

> Marti

>

September 27, 2006

I drink licorice tea, have lots of vitamin c powder, and saline - 1

litre of water to 1 level tspn of organic Celtic sea salt to hydrate.

> You must be bushed mate. I don't know how you work at all.

> Hope this helps a bit.

Thanks, . It ALL helps me put the pieces together, really.

And I AM bushed! I just pretty much work and crash, daily, but

fortunately I am still able to work (knock on wood). Korean kids give

me at least two new grey hairs every day!

Steve

September 27, 2006

Many things that make us better also make us worse. My experience is that

ANYTHING that gives me more ability to stay active results in symptoms: sore

throat, sneezing, coughing, fatigue, ache, stomach pain. And cognitive stuff.

But I am more concerned for you that you are living at the edge of your ability

to function. I did that for years, until I couldn't any more, and fell over the

edge. I was just trying to live, get what I could out of life, but it was tithe

biggest mistake I have ever made, and I have paid for over a decade with just

shreds of a life left. Since I couldn't possibly have many decades left-1plus?-

it was a loss I grieve.

I once heard- and it did help me get a grip- to only ever use 2/3 of my

available energy for activity and leave the rest for healing. It was very hard

to figure out how much was 2/3, but almost never using myself up has REALLY paid

of.

That's what Cheney said from the beginning;lifestyle first.

A word to the wise.

Adrienne

Immunopro_post-exertional malaise.... instantly?!

Hi,

Since I've been on immunopro, I have felt pretty good. However, now

my post-exertional malaise has been more severe and has manifested

faster than ever before. Today, doing a little 5 minute song/dance

routine (extremely mellow!) with my kindergarten students, I got the

PEM within an hour, and it has lasted well into the day. Last week,

at a school picnic, chasing a ball twice made me extremely... dumb

for two entire days, and it manifested quickly, also.

My post-exertional symptoms are almost all cognitive. I get light

headed, dizzy, extremely grouchy, depressed, disoriented, cannot

focus, cannot communicate, cannot move properly, flu-like

exhaustion, extreme sensitivity to light and sound, headache, and

dryness. It used to take awhile to set in, but lately, all it takes

is running for the bus, and I'm paying the price almost instantly,

and for the remainder of the day.

Is this a part of herxheimer? Does this mean the whey is working? Or

am I getting worse for some reason because of it? Has anyone else

had a similar experience?

Anyway, thanks for all the info and prior responses,

Steve

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

September 27, 2006

Hey Steve -

Yes, Licorice is probably one of the best things you can take for your

adrenals. I see a very good naturopath who is helping LOTS of folks with adrenal

fatigue (it's so much bigger than you realize, and not just with CFS folks). For

my adrenals, I take whole licorice extract (Wise Woman Herbals). Also, I take

something called " Phytisone " by Thorne Research (2 caps in a.m.). The Phytisone

has a whole bunch of adrenal tonics like licorice and ashwaganda root. It's also

relatively cheap, from the U.S. standpoint at least ($11/bottle). Also, a good B

vitamin pill. Adrenal fatigue depletes you of B6 and B12. I take upwards of 500

mg/day. And of course lots of Vit C.

Other than that, reduce stress and avoid all sugar and white flour products.

There is no pill (other than Cortef, which I will not take) to " fix " your

adrenals. It's really something that you have to work on yourself.

That's my 2 cents on adrenal fatigue. Take care of yourself!

=Wendi