...

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

thanks very much for sharing !

<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!!!

yes powerfull stuff ! the difference betwen being half dead and fully
alive.
when you end up at the hospital in a state of crisis , you better be
carefull.
In my local hospital they were going to give 3 IV of (hold yourself )
1000
mg of solucortef  each ( enough to kill  you ) when half conscious  i
told
them that lt could not be 1000 but 100 . the nurses very confident
told me
that it was right( writen on the paper by the doctor ) and that they
were
giving this  kind dosage all the times.
The other adisonian in my support group have all kind of similar
stories .
With addison disease it is wise to carry at all time a seringe and
clear
protocol of intervention in case of shock.

>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 sound that you are just on the edge, .
meaning you still have a chance to recover or becoming dependant for
life
to the supplementation.I didn't get for how long you are on
hydrocortisone
.?
The dosages given to you seems to be outrageously high ,hope you don't
stay
too long on more than 30 a day the outcome is osteoporosis , even on a
low
dosage (20 ) it is still the outcome in the long term. ( it is even
more
true for women )

< 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.

yes and it doesn't take much to go on the other side . ( seringe is
important here, i am preaching my self because i don't bother taking
one
even now that i know by experience,  that a crises can come  very
surprisingly fast and despite that i am often outthere in the wild  )

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?;-)

Dhea made a big difference to me too , didn't go into pregnenolone
yet.
my memory will like that i suppose ( it is pretty bad )
before the dhea my libido was gone for few years , it is back now .i
can
gain weigh too .

< 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.

When i gave myself permission to go for animal fats ,i devored huge
quantity
of it and started to feel a big change

< 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.

that is tricky,  to eat lot of salt,  because somehow it contribuate
to more
waisting of sodium , florinef seems to be a better choice . Cortef
have a
little bit of mineral corticoid activity too so some can manage
without
florinef

<I'm hoping pregnenolone might take care
<of that, as well as helping to reduce the hydrocort.

is pregnenolone can be converted in aldosterone ?( the natural hormone
that
is replaced by florinef )

!

<Is there some way to determine the adrenal output without
<weaning off cortef and risking a crisis?

I think there is tools to look at the state of the adrenals themselves
scanner?) i don't remember ,those kind of test have been done 19 years
ago,
overwise there is no test possible  or meaningfull while under
medications

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


thanks again for your effort.

jean-claude

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