Jean-Claude,
I'm not sure who you're addressing with this reply, since it includes
quotes from both me and Siobhan but...

My Addison/paleo story very briefly (hah!) goes like this:

During my 13 years as a vegan (1984-1997), I endured a bowel
perforation, 15-inch removal and resection and peritonitis (1991--I
lived, obviously).  Add to that undiagnosed and untreated Crohn's
Disease (aggrivated by my high-carbo grain-based diet), among many
other
maladies like chronic pain and candidiasis.  Four years ago to the
month
(I was only 36), my physical and hormonal state declined rapidly
within
six months.  I was down to 95 lbs. from my normal 125 (I'm 5'6".)--I
looked like a wraith with those sunken, dehydrated, dark-circle eyes.

Chronic fatigue and pain left me unable to produce my artwork and run
my
business. Uninsured, I didn't care to put myself through the
conventional medical system, so I researched alternatives.  With no
results from supplements, I changed my diet, albeit very slowly.  The
nutritionist I was working with didn't have the knowledge to fully
interpret many of the tests we tried, but Crohn's and adrenal problems
peeked through in things like low sodium and high BUN levels, high
mononcyte and erythrocyte counts, anemia, low white counts, numerous
food allergies, and of course, the overwhelming evidence of symtoms
(like salt cravings, BP's 90/56, just to mention a few).  Allergic
food
elimination and adding animal protien helped somewhat, but the fatigue
remained, especially with any exercise.  (I've been very physically
active all my life.  I normally hiked a rugged mountain trail for 3
miles before putting in 8 hours in my home workshop each day.)  At one
of my prolonged low points (1997-1998), I could force myself up a
short
slope and back, but then I'd be exhausted for a week or two.

Last spring, after trying to reintroduce rice to help gain weight back
(silly me!)--the only grain I was able to eat for a few years--it did
more harm than good.  So I've been strictly paleo since.  But I did
not
improve much, nor did my appetite.  I started with a good holistic MD
last summer.  He immediately wanted to put me on hydrocortisone, but
(silly me again) I resisted and stuck with adrenal glandulars and
thyroid treatment (My body temperature was around  96.7 degrees F.)  I
showed a little improvement.

So, on one of those "good days" this February (2000), I took a fateful
hike.  It was a four-miler, with 15 lbs. of photography equipment on
my
back.  To make an already long story short (?:-), I made it home.
Dizzy, incredible back pain, barely able to get up and empty an
always-full bladder, guzzling water and salty broths for a week, I
called my MD.  They couldn't give me an appointment for 6 weeks!  He
called in a script and I gladly started on 20mg./day hydrocortisone.
After 3 weeks I was able to drag myself to the allopathic osteopath
that
the state pays for, just to see if he could do something for my severe
back inflammation while I waited to go to my holistic MD.  That was
useless.

I finally got to my doc and he saw how horrible I looked.  He okayed
me
to try a higher dose of hydrocort.  I showed improvement on 40mg. and
was going to try 60mg. with a short hike.  But that same day (late May
2000), I ended up in the hospital emergency room for a Crohn's
emergency
(partial intestinal blockage, dehydration) and was subsequently put on
125mg. solu-cortef, IV.  WOW!  Did I ever wake up after 4 years of
chronic fatigue!!!

So, tapering down on the hydrocort and experimenting with higher doses
and exercise since then has only affirmed what my doc and I now
believe
to be Addison's.  That fateful February hike episode was about as
close
to an Addisonian Crisis as I could get without being taken in for an
emergency.  I was lucky to have made it out of the Quebec Run Wild
Area,
because there was nobody else around for miles.  Until we get the
Crohn's under control (the allopathic treatment for that usually
starts
at 40-60mg. prednisone), it looks like 30mg. hydrocort will just
barely
keep me on my feet.  I hope to reduce it some time in the next year.
DHEA and pregnenolone are working nicely, especially for motivation,
creativity, memory, muscle strength and libido (wanna come back to my
place, nudge, nudge?;-)  I'm also up to 116 lbs., after not being able
to get past 106lbs. on a paleo diet of 1 1/2 lbs. of fatty meats/day,
with some much-needed hydration.  I'm not on Florinef yet, as my water
loss seems to be cyclic.  When I start to lose too much water, get
constipated, or my BP drops, I increase my salt intake.  I had a mild
dehydration episode a few weeks ago, where it was very warm and humid
and I just couldn't hold onto water no matter how much salt I ate.
Ended up with abdominal cramping from Crohn's/IBS.  So, Florinef may
be
in my future--don't know yet.  I'm hoping pregnenolone might take care
of that, as well as helping to reduce the hydrocort.

Energy increases I have are cyclic also.  I learned that progesterone
can be converted to cortisol, and that certainly explained why I would
perk up little during that premenstrual time.  Well, at least I know
the
ovaries still work somewhat!

So, although it's never been determined what % of my adrenals are
kaput,
my doc has DXed me with adrenal insufficiency, and I wholeheartedly
concur.  Is there some way to determine the adrenal output without
weaning off cortef and risking a crisis?

Pooped out just from writing this long-winded thing,
Lois


Lois wrote:

I've been unable to locate any "alternative Addisonians" either (other
>than you, of course).  Are there more of us around somewhere?

Siobhan wrote:

>I have never accepted pharmaceutical drugs for Addison's and have not
done
>*any* pharmaceutical drugs for about 12 years now.

May be we don't talk about the same thing !.  I have been told that To
be
diagnosed with addison disease you need to reach a point where 90
percent of
the  cortex of the gland has been destroyed. You need to be close to
,
or
in an addison crisis .( that can be fatal  if not treated ) With less
than
90 percent of the glands ,it is still possible for more than  the 10
percent
left to produce enough cortisone to function.
so apparently you never reach that point or did you go into crisis.?

 did you or Do you have to take adrenal extract to function or can you
produce enough of  your own cortisone?

 if i could start all over again, knowing  now what is the consequence
of
starting cortisone replacement ( complete shut down of the cortex of
the
gland ,osteoporosis etc...) and knowing better now how  to deal with
stress
i will not start the therapy  so blindly. There is many thing that
could
be
done before that.

There is one young woman in our local addison disease support group
who
is a
chinese doctor when she got diagnosed with addison she felt obliged to
start
the therapy despite her resistance to it .
She manage now one year latter,   to stay  on a very low dosage (
little
bit more than half normal )
and use many chinese herbs to help.

There is a naturopathic doctor  close to here who have ben diagnosed
too
and
despite all the research for alternative that he did,  he had to take
the
full dosage of  cortisone

My self i started the process to reduce below the minimum dosage ( 20
mg
cortef) and manage for months with 17.5 only  .I think eating lot of
animals
products helped me to do that on top of the emotional work that i am
doing.

jean-claude