to The VT CFIDS Associaton, Inc.
and our VTCFIDS Support Group,
It was an exciting, eventful first meeting. I had a unique experience
when I told the group some of how CFIDS had affected my life. In the
silence of your listening I felt a quick and accurate perception, a
comprehension and empathy which I hadn't felt before in any group and
very rarely with individuals either. Receiving your understanding and
empathy "put me on the map", helped me "click into place".
I became better able to perceive my own reality in useful,
perhaps life-altering ways. How curious that it takes an empathic, understanding
response from other human beings to enable one even to know one's own
reality. It's as though, before this, I were inadvertantly cast into
some dungeon-like unconsciousness--as if by one of those bad spells
in fairy tales--before some kind people came along and released me with
their understanding. The gift you all gave me was transmitted in the
silence, in the quality of how you heard me--and I felt it!
I brought up the subject of the adrenal hormone cortisol, which I have
been taking as two 5 mg. pills of Cortef (brand name) since 1998,
because it is easily the most helpful treatment I have found, and because
I expected that few of you would have tried it. Before my doctor presecribed
this, I took a saliva test called ASI (Adrenal Stress Index) and TAP
(Temporal Adrenal Profile) which showed how my cortisol and DHEA levels,
tested at 4 times duing one day, compared to a normal range. Both this Family
Practitioner and later a Naturopath told me they regarded this saliva
test as more accurate than the typcial blood test for cortisol
taken once in a day, first thing in the morning. This test cannot show
what your cortisol levels are the rest of the day. PWCs do not
typically have outright adrenal disease and failure--which standard
testing can identify--but rather an underfunctioning HPA axis--meaning
that our hypothalamus does not seem to be doing its job notifying the
pituitary gland to notify the adrenal gland that adrenal hormones are
needed. So, functionally we can end up with a low adrenal picture, which
is called hypoadrenia. You can look that up for the symptoms. Also if
you want to find out what a fully crashed adrenal system is like, look
up Addison's Disease. Anyway, as is thoroughly shown in the book I passed
around, Safe Uses of Cortisol by Dr. William Mck. Jefferies, low
dose cortisol for those who are functionally below normal levels,
is safe and very helpful--both for energy and for the immune response
it enables. As I briefly said, the very bad reputation that cortisol
got with doctors was the result of their prescribing doses that were
far too high. Later, when the patent ran out, the drug companies had
no incentive to research it further.
A few other facts for your general knowlege. Dr. Jeffries writes that
if you had no ability at all to produce cortisol, you would typically
need 40 mg per day--that is the full replacement dose under normal conditions.
Another doctor recently told me that 30 mg was now considered adequate
for a full replacement dose. So that gives you a baseline for judging
amounts of this hormone. Another important fact is about prednisone.
Prednisone is 4 times stronger than cortisol. Lab made cortisol is chemically
identical to what our bodies make. Prednisone is a much stronger version
of the drug which is not what our bodies make. Prednisone is useful
in short term treatment of serious, often life-threatening conditions,
like severe asthma, etc. but is harmful long term. So it is typcially
tapered off in short order to bring a patient out of a crisis.
To describe the experience I have with 5 mg cortisol in the late morning
and another mid-afternoon, it feels like water to a thirsty plant or
as if the water came in and lifted a boat off the ground. I suddenly
feel normal and able to do normal tasks. Once I accidentally took two
pills and the feeling of "too much" was one of internal pressure
and irritability. The cortisol wears off after 6 hours and is not a
good idea to take before you need to sleep as it activates the system.
With an appropriate dose, there is a sense of balanced energy and
good immune function.
Another important point is that while cortisol is considered a master
hormone, able to do many tasks and even be converted in the body to
some other types of hormones when they are in short supply, it cannot
do what the other adrenal hormones do, such as the fight or flight response
of adrenaline or the salt (and water) retaining function of another
adrenal hormone whose name I forgot. For me, all of those hormones and
functions are low. I have little "exertion capacity", little "push"
or ability to deal with intensity, speed or noise. So cortisol
doesn't correct that.
There are a number of hormones in our system which medicine can't yet
reproduce or administer in physiologically appropriate ways. But, as
those of us with CFIDS often are, functionally low on many of these
hormones, any safe supplementation we can employ to pull up our
levels to normal can significantly improve the quality of our lives.
Thank you all. I am on the Buddy List. My email is correct but I have
moved from Bellows Falls and am now living in Westminster,
Wishing you all the best,
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