His belief is that most people with CFS were born with a
weakened adrenal system, passed down to us by previous generations. He explains
how we try to help ourselves, push ourselves, only to get worse. I have found
more help and comfort from his book than any other book I’ve read!!"
"Dr. Poesnecker explains in his book Chronic Fatigue
Unmasked 2000 that his theory is based on having low functioning
adrenals. He mentions that he would rate his patients based on a score
of whether he thought they always had low functioning adrenals (hereditary) or
whether a series of stressors, or a catastrophic stressor or trigger placed too
great a burden on the body. I know in my case this is exactly the truth, since
I’ve had 4 Adrenal Stress Index profiles in the last 3 years, all of which show
that I have adrenal fatigue. I have severe, disabling fatigue, anxiety off the
scale, sleep disorders and a host of neurological symptoms like paresthesia
(tingling and burning sensations in the skin and muscles all over my body),
visual difficulties, tinnitus, etc. I believe I was about 50/50. I always
struggled to be as healthy as others, but the combo of antibiotics/menopause/a
near fatal reaction to thyroid meds nearly destroyed my adrenal function. JJust
this alone (not withstanding that CFS is caused by virus, stealth pathogens or
something else) is enough to explain MANY of the symptoms we all have. Namely,
that we have hyper-sensitivities to light, sound and a complete inability to
handle stress. The adrenals simply cannot keep up with the demands, the
hypothalamus goes on alert, prompting many of the neurological difficulties
since it is the ‘interface’ with outside stimuli and I might add directly
connected to the central nervous system processor. I was the gal that wrote to
you before and said I was considering being treated (but ONLY by phone) by the
Clymer Healing Center in Pennsylvania. They have been a great help in
understanding how my adrenals and hypothalamus (HPA axis) do not function
correctly, prescribing adrenal compounds like Adrenal Cortex Extract,
Mil-Adregen and now small amounts of Cortef because my adrenal function is still
not working right. At this point I think they’ve been all the help they can and
I’m going to be seeing Dr. Gilbert Manso in Houston a very vocal Christian, PTL.
It very well may be that we all have a similar profile personality wise, but Dr.
Poesnecker and Dr. Neville who took over his practice say that a majority of
their patients who come for treatment for CFS have, in fact, malfunctioning
adrenals, EASILY diagnosed by a saliva test. Now whether they had it to begin
with or developed it after the ‘trigger’ that began CFS, Adrenal Fatigue or
Fibromyalgia remains a mystery."
I have seen it advertised at eBay for $22.95 by a company
named "aliveandaware.net" which I have dealt with and had very good service."
[Fortunately, I have not had
constipation with cholestyramine, but I am only using 1 scoop per day. According
to Dr. Shoemaker's protocol - doc who wrote MOLD WARRIORS, you should take 3-4
scoops per day, but it's hard to fit that into my schedule. Still, I am
improving! See my mold page at www.fms-help.com/mold.htm.]
5. METHODONE
From a reader--
"I also felt 'possessed,' if you will, on
trazadone & remeron....really was just
"junk" that I tried & dumped in the toilet a few days later many years ago.
As for my 3rd week on methadone, I am no longer taking vicodin or xanax and pain
is minimal. I have not gone thru any "withdrawal!". I really am afraid to
believe it. Am still having difficulty taking 5mgs. 3 x day as am just too
sleepy. So have to drop to 2/day to function well. But function I do: I went
shopping for 4+ hrs. 2 days last week!!!! I haven't been able to do that in
YEARS! Will have to learn to pace myself all over again as the days in between
shopping splurges were not pleasant, but not totally disabling. A day of
shopping like that a month ago, would have left me hugging my mattress for
weeks!! So I will be the "methadone lab rat" for y'all!"
6. COMPASSION
From a reader--
"Over the past ten years, I took an antidepressant,
which made me gain thirty pounds, and caused me all kinds of terrible
side effects, in addition to the Fibro!! So, I stopped taking it, and not only
feel a lot better, but feel more like "me" and I've lost the thirty pounds and
now weigh what I always have weighed since I was an adult, which is a "normal"
weight. Being overweight taught me to have compassion for people with weight
gain "issues" since I was always slender for my entire life, and thought that
people who were overweight just didn't 'control" their food intake, or exercise
enough. So, now that I have been "overweight" with no control over it, I
understand how it feels, which is good. Compassion is one of the most important
qualities that we must all have in this life."
[I have learned this too! If I had
not had to struggle with FMS/CFIDS since 1982, I would probably be very
judgmental toward people who complained of these weird symptoms. I have come to
realize that God knew what He had to do to improve my compassion and
understanding, which I know now is even more important than enjoying perfect
physical health. My 3 personal stories about having fibro, CFS and
insomnia are at: www.fms-help.com/fibro.htm, www.fms-help.com/fatigue.htm, and
www.fms-help.com/insomnia.htm.]
7. ANKYLOSING
SPONDILITIS
A reader works with a young father
who has ankylosing spondilitis and she asked him about it. Here is what he
wrote--
"The most profound and immediate improvement [with my
ankylosing spondylitis] seems to be by following the
strictest Candida
diet. In short, eat ONLY meat (unprocessed), non-starchy veggies,
coconut oil, olive oil, lemon juice, eggs, real butter (the only dairy product),
and probiotics. There is nothing else that I can eat and feel well. I would be
happy to answer any specific questions if you want to pass on my e-mail." -
Scott
scottbutts@netzero.net
8. PAIN
WORSE WITH RAIN
From a reader--
"My pain is significantly increased whenever it either gets
rainy or we get the dry desert winds called "Santa Anas" here. The beach weather
is usually quite temperate and that's been extremely helpful for me! So, weather
does affect me!!"
[Damp or rainy weather used to
make me ache more from my fibro also. Heat or cold did not. Was diagnosed with
FMS in 1982 - see www.fms-help.com/fibro.htm. I have been 95% pain free for
many years now, although I still have limitations of my energy and need to
rest. A list of things I currently use/do is at www.fms-help.com/what.htm. My
husband says I have remember I'm 55 and not 25 anymore.....ha! My mold problem
may be going away finally....at least I sure hope so.....see update below.]
9. DOM'S
MOLD UPDATE
"CSM powder (cholestyramine) was a
prescription from my doctor at St.
Vincent's who worked as a Capitol doctor
in Washington, DC. I
asked him to prescribe it after reading MOLD WARRIORS
by Dr. Ritchie
Shoemaker, sent to me by George, a newsletter reader. Dr.
Shoemaker's site is at
www.chronicneurotoxins.com. I am supposed to be taking 3-4 scoops
per day,
but only take 1 (due to time limits on when you can take the
stuff). CSM tastes pretty good
(fruity) - you mix it in water and I add a
small amount of apple juice for
flavor. It's a generic drug now and the can
was only $10 at Walmart pharmacy
- a bargain compared to the financial drain
I had last year with so many
expensive meds. One of them, an inhaler because
I couldn't breathe, was $97!
I told the pharmacist I would just
have to die. However, after negotiations with my doctor's office,
they got
the price "down" to $63 and I bought it - and it didn't help! This
mold
illness has been one of the most frustrating things I've dealt with.
Because
my cholesterol has been high (273), the doc thought we could try CSM even
for that purpose, but you don't have to have high cholesterol to use it. It
absorbs
both mold and cholesterol. You
don't stay on it once you are well, unless you get re-exposed to
mold. Last
week I had 3 good days (I had energy, felt alive, did not cough or feel
there was an elephant on my
chest). Maybe this stuff is working. I've
also got some of my other meds and
supplements tweaked a little, and
10. MICROWAVING
SPONGES
From a reader--
"Apparently many people tried to microwave DRY sponges after
seeing this tip on the net, and started fires, and broke microwaves. Sponges
have to be WET to use this technique safely and not NUKED until dry."
11. CHOLESTEROL
From a reader--
"I just got this book from a health food store, so I can sound
like I know what I'm talking about when I tell my Dr. I'm not going to take
Lipitor anymore:
Statin Drugs - Side Effects and The Misguided War on
Cholesterol by Duane Graveline, M.D. He's a former NASA scientist &
astronaught. His website:
http://www.spacedoc.net/. I went
researching because I just can't afford the Lipitor right now, but I'm glad I
did! Search amazon for "Statin Drugs" and you'll get quite a few other books
along the same lines. Seems like a lot of them were written by doctors, too."
12.
FRONTIER MEDICAL INSTITUTE
A reader asks if anyone has tried Dr. Terry
Grossman at the Frontier Medical Institute in Colorado. If so, how did
it work out?
13.
PLEASERS
Reader 1--
"When I attended Dr. Jacob Teitlebaum's lecture in Stamford,
CT this past summer, he too placed a type A personality at the
top of the category for those who acquire CFS/Fibro. However, it's not just
somone being hard -driven. It's the person who is hard driven because they
have to please others and have the need to feel needed.
They don't know how to say no to anything. This is entirely
different from the hard-driven executive who burns himself into a heart attack
because he's climbing the corporate ladder. Trust me, he knows how to say no,
mostly to his family and friends. The type of hard-driven Teitlebaum was
taking about is the one where you already have 10 things on your platter but you
would feel guilty if you didn't watch your friends' kids on the very night when
you're preparing a report for a meeting in the morning, and oh by the way mom, I
need a costume for Halloween tomorrow. So you watch the kids, who are bratty,
sew a costume and stay up until 2am writing the report that you get up at 6am to
get into work for that early meeting in order to give it. This type of driveness
provides no room for the person to respect themselves. Most people in the
helping professions fall into this category (in otherwords, how many overweight
doctors/nurses tell you to lose but refuse to take the time out for themselves)
as do 9 out of 10 women. Interesting how CFS/Fibro hits women most
frequently. On top of this constant self-imposed stress,
which lowers immune resistance and most likely burns out the adrenals,
Dr Teitlebaum said that he and the doctors he's trained have stopped as "Did you
have a traumatic event happen?" and just ask "What traumatic event happened just
before you developed CFS?" Even when someone says nothing, he'll ask what was
happening in their lives around that time. Inevitably the person will say
something like "Well, I was in the middle of a nasty divorce...." People of this
personality type are so used to being over-pressured that they don't realize how
traumatizing that is or that it's an event that places them high up on the
stress scale. Illness is another thing that's right up there whether it's yours
or a family members'. People don't realize that the constant
stress of being a type A pleaser personality reduces your immune system to mush
as well as burns out the adrenal glands. They're really always on the
brink before a life event pushes them over the edge. In otherwords, their glass
is so full of water, there's no room for anymore. When the life trauma or major
challenge hits, the water spills over the edge. As for the not exercising,
when I crashed with CFS I was going to the gym 3 X's a week and had a
personal trainer. I'd always been active, had always exercised, and
enjoyed the outdoors. When I was at the Teitlebaum lecture, I found others who
had a similar story. It's after the CFS/Fibro hits that one finds it so hard to
get back into an exercise groove because what you're capable of doing is
different each day. However, people with CFS/Fibro have been shown to have lower
glutathione levels and more difficulty detoxing chemicals from their
bodies...and we're all taking something for this. Exercise is an effective tool
to help our bodies detox. In fact, sometimes the stiffness and pain is more from
toxin buildup than the fibro."
Reader 2--
"I almost always get an upper respiratory
illness just before Christmas. 3 years ago it was
bronchitis for 6 weeks, this year it was a sinus
infection for that long. Yet I end up hosting his son and
daughter-in-law and everyone acting as my being sick is no big
deal. I'm convinced that the hosting instead of putting myself to
bed is the reason I end up on a second round of antibiotics. So we finally
came to an agreement that if I end up sick another year, he'll take on the
hosting duties, I'll put myself to bed, and when they come we'll just tell them
I've been sick and need to rest. Here's some money - go to the store and
get what you'd like to eat. Meanwhile, please keep the noise down.
That way, he can see his son and I don't feel responsible for making them feel
welcome. Took my after holiday stress level way
down. Maybe I won't dread the thought of the holidays next
year."
[Years ago, I read a book called
THE PLEASERS by Dr. Kevin Lehman. I identified myself right away as a
pleaser, and I'm sad to say, for a short while after reading the book, I was
saying NO all the time to people - like toddlerhood revisited - but I eventually
came into balance. If you read this book, just be careful not to alienate
those you love by a sudden personality change......ha!]
14. IDENTITY THEFT
Watch this short video by a Sheriff on YouTube
Identity theft from autos, especially in Florida--you
don't need the stress of something like this happening to you.
15. OVERACTIVE
BLADDER
A reader asked me a question about this and here was my response,
which may be helpful to other readers with this
problem--
"I've been using 02 sachets since 2001. I get them from
Nutronix.com. When my OAB was really bad, I would put one of the
sachets in my water bottle that I take everywhere. At
home, I open a
sachet and pour the "sand" into a plastic water container
that I keep in the
fridge. There are many ways to alkalize your body (for
instance putting a
drop of ingestible grade essential oil in a glass of
water, or through diet
- avoiding foods that make your pH acidic.) For me,
I have to avoid
orange juice, oatmeal and sometimes tomato-y foods like
spaghetti. I
have been doing lots better lately with the use of essential
oils, but
that's a whole 'nother story.... The mineral sachets are easy to
use."
16. VACCINES & FMS/CFIDS
From Reader 1--
"The stress and burden of carrying the world
on one’s shoulders can give way to Fibromyalgia….but what is 'Fibro?' Where did
it come from? I’m still convinced that Dr. William Wong’s
research is correct: Latent Polio and other vaccines that went dormant
in the body 40 years ago, when we were young and resilient, will release with a
vengeance under the stress and burden-bearing emotions of our later years. There
have always been people with stress and burden-bearing—The Depression; WWII;
Persecution; Famine; etc. But FMS was an unknown. It was not until our
generation—the Baby Boomers—who were the guinea pigs for Polio and other
vaccines—that FMS and CFIDS became an epidemic. By the way, CFIDS-FMS is almost
non-existent in 2nd and 3rd world countries. They certainly have stress and
burdens—but they don’t have vaccines!"
From Reader
2--
"I got CFIDS as a teenager. I was
17. I was very happy, getting straight A's again after a period of
rebellion, had been accepted to the college I wanted, and had lots of friends,
etc. I was already in counseling due to the rebellion stuff, and was very
happy and well adjusted. I had not been a sickly child, though I had been
under a lot of pressure around school but it didn't really bother me until
I was about 13, because school was always easy for me. However, I
got an experimental vaccination at the age of 12, and after that, I began to get
sick a lot. I had a blood test about 6 months after that
vaccination that showed so many white blood cells they had to evaluate me for
leukemia. This shot has been denied by the state, county, and city where
it was given to me. In other words, it never happened. Why
would they do that? I don't know. But a friend of mine in that same
line for that free vaccination also has a very bad case of CFIDS. I see
a 100% correlation between that d*** vaccine that was free--so my working class
mother went ahead and got it for me- and my health beginning to unravel,
culminating in one of the worst cases of mono at the age of 17 that
anyone had seen. It never went away. That was over 22 years
ago, and I still suffer from this and that horrible symptom, and I've
learned to cope and adapt. But I have high titers of Epstein-Barr (about 7
years after I had mono I actually tested positive for a monospot again),
Parvovirus B19, and HHV6A. Personally, Acyclovir (antiviral) has
helped quite a bit. I would strongly suggest you read
'VACCINE A' by Gary Motsumoto. I have had emails with this
writer, and he has confirmed through an anonymous government source (so he can't
prove this, but he has plenty of proof about the other incidents) that a vaccine
using the adjuvant Squalene was given to children in the late
70's and early 80's."
17. STRESS &
CANCER
From a
reader--
"In 1999 after many years of
chronic pain & major sleep problems, I finally had to give up my work as I
felt that my body, physically & mentally, was totally burnt
out. Later on that year I developed the cancer condition Hodgkins
Disease,also known as Hodgkins Lymphoma which as you may know is a cancer of the
lymphatic system. What I won't be able to prove is that the
previous stresses put on my body over the preceding 12 years had any bearing on
the onset of Hodgkin's, but it probably had some impact on
it. The Hodgkins was successfully treated with radiotherapy but
unfortunately recurred in 2004/2005 when thankfully it was successfully treated
again, this time with
chemotherapy."
18.
CANNABIS
"I can attest
that cannabis will help with sleeping, but smoking it makes one cough, and
I can't say that it is 'good' for you. I have a lot of problems sleeping,
too, but I can't smoke anything because of my
lungs."
19. ALGAE & STEM
CELLS
"I am a real
estate agent that has fibromyalgia. Before I started taking
algae, I would have to come home and take a nap once or twice a
day. I didn’t think too much about it because I was 62 and thought it was
because I was getting older. After starting algae I hardly ever took a nap.
There's an all natural stem cell product
[Stemplex] to help your body reproduce its own stem cells. I am
now 72 years old and very active selling real estate. 2 days after I started
with this I found myself sleeping much better. My legs must not be as restless
because my bedcovers are hardly moved at all, before sometimes I would even find
some of them on the floor. Also I have not had to take a pain pill since I have
started taking it. www.simplexityhealth.com/joanne.
20. RESPONSES TO LETTER FROM COLLEGE
FRIEND
Here are some
responses (could not print all, but these are typical) that I received
about my friend's email about the causes of FMS/CFIDS--
"Sounds like
self-righteousness to me. Everybody knows what the other person
should do. Frankly, I was offended."
"Wouldn't it be lovely if this was true?
All we would have to do is 'relax' and we would all be fine.
However, we know from our collective experiences that FMS and CFS are more
complicated than that. You may recall that it was not so long ago that doctors
believed that PMS was due to stress and was 'all in a woman's head.' Now we know
that PMS is a hormonal problem. Someday, we will find out what causes FMS/CFS.
In the meantime, we should all take the best care possible of ourselves. We
should eat right, exercise, laugh, have a positive outlook, etc. However, please
let's not blame ourselves for these conditions. I refuse to believe that
being hardworking, caring and responsible has caused this. We all know in
our hearts that it is not the case."
"I do not buy your friend's
explanation. Yea I too do a lot, but I also have had one problem after
another since age 16. It equaled a dozen surgeries and much more. I grew up on a
farm, we raised our own natural foods, (beef, veggies, chicken, pork) and I come
from a very spiritual family devoted to Jesus. Sorry, I just think your friend
is grouping folks together. Nope! Not buying it."
"I just read your [response to
your college friend] and I feel like it was written by me. Your friend is so far
off base. She makes firomyalgia sound like a cult that we have all chosen to
join. It is what it is and I believe every one has their own way of
coping. I thank God for people like you who really
care about people like me. You always put such a positive spin
on the subject that you write about. You never pretend
to know it all but you are so generous in sharing what is going on in
your world and methods you have tried for coping."
"I can see why that email from
your former
classmate bothers you. To me, she is too forward, too
bossy, too know-it-all, and too 'preachy.' You,
on
the other hand, are sensitive to others' needs and
feelings, and try to
offer help in a loving, compassionate way.
Don't let her bug you any further."
"I truly feel that those of us that
come down with these illnesses are genetically predisposed to
getting them...and the Type A, driven folks who do not come down with FM/CFIDS
after a trauma of some kind (physical/mental/emotional; after a long time of
stress or a short time) are NOT predisposed to developing them. I think
that genetic predisposition has to be 'in place' with a person in order for them
to possibly develop these illnesses....and I'll bet that some folks with the
predisposition that experience trauma in their lives do not develop these
illnesses...so, to some degree, I think an added factor is just plain old bad
luck!! So, with predisposition in place, and bad luck, then comes the
trauma, of whatever source: physical (like me, a car accident I feel was
the trigger); emotional; and mental. I don't think everyone with these
illnesses is as lucky as your friend seems to be, 'recovering' from
FM/CFIDS. I truly believe that you can have varying levels of these
illnesses. I don't think that the type of personality you have (driven or
more laid back) is that much of a factor in developing FM/CFIDS...at least,
not for all of us. I have never been a super, gun-ho Type A, BUT...I have
been a caring person all my life and maybe too much so. Proudly, I now say 'no'
a lot more than I say 'yes'!!"
"Researchers have found genes now that
predispose someone to CFS/Fibro. The toxins you're
exposed to in utero set you up for later life disease. And the cause and
effect are so far removed from one another, it has been hard to link
them."
"Type A people do not have a patent or copyright
on
gathering CFIDS/FMS diagnosis labels. In our group we have a
child
diagnosed at the age of 18 months, her biggest stress
being a wet diaper."
"When I went for a second opinion for
FM at Duke University, they told me up front that people who had FM were
ones that had always taken care of others. I said,
'Bingo!' That coupled with severe job
stress."
"Not all folk stress out in the same
way, with the same results. Stress seems to attack the weakest
point in the body; therefore for some the result might be fibromyalgia,
for others it might be cancer or some other malady."
"What about inherited
predispositions, the environment we can't control, even Adam and
Eve's
original sin? I believe there have been studies of the personalities of
those
with FM/CFS and the results were that it is
NOT true that most with this
disease are of the perfectionist,
overachiever type. Maybe it only looks like
that
because those of us who are like that are the ones who keep on looking
for
help!! The other personality types may just give
up."
"I don't think I am over-responsible. I
might sometimes be Type A but am just as happy to laze the day away
reading and thinking. I never moved and shook the
world. Barely worked a total of 2 years in my whole life. I
have tried every supplement under the sun, with little or no great
results. Chlorella, spirolina, blue green algae, brown algae with
fucoidan, oxygen, biostrauth, milkthistle extract, borage extract, wachters
mineral and seaweed vitamins, Energy C powder, noni juice-evil stuff, coloidal
minerals by that Dr. Wallach, Flanigan water, homeopathics, b12 tablets, stupid
Juice plus tablets, www.seablue.com transdermal vitamins,
Peppermintplus pills, freshly juiced carots and apples, wheat germ, and on and
on and on, acupuncture, ouch!"
"It is foolish and arrogant for
someone
to say that if you are not healed it is all your
fault. I have already
pointed out the sheer
stupidity of that stance not so nicely to a
new-ager at a
health food store."
"According to the pain
specialist I used to go to when I suffered from RSDS, people who are type A
personalities have what’s called a “high sympathetic
tone.” This means basically that type A people are more ‘wired’
in temperament and thus have a more keyed up 'fight or flight response' which
basically puts these people at a greater than normal risk of developing
neuro-muscular disorders, especially when under stress. Thus your friend is
right, but for physiological reasons more than psychological ones.
The keyed up sympathetic nervous system is why you’re type A in the first
place."
"I do
wonder if the stress and or being an over-responsible workaholic is causative or
coincidental. I say this because we have 2 neighbors with fibromyalgia, I have
not heard of their also having chronic fatigue syndrome. I would
not characterize ether as being over achievers. Both have had stresses
to deal with, but I do not believe the stresses were any different the those
enjoyed by others in the community."
"It's not surprising to me that
people with FMS/CFS feel better when they
take some stress out of their
lives, and take better care of themselves
nutritionally. So do people with
syphilis, TB, Lyme disease, cancer, and
even just ordinary people!!! It
doesn't constitute a 'cure' for the disease.
I hate to 'dis' your college
friend, but she really hasn't discovered any
magic cure. In fact, she may be
EXTENDING people's agony by implying that
their feeling sick is caused by
their attitude and/or not eating enough
vegetables, etc. She'll wind up
making people (like YOU) feel worse about themselves,
because she makes it THEIR fault that
they don't feel better.
This 'positive attitude' stuff
annoys me greatly.
It is a convenient tautology: if
you feel sick, you don't
have a "positive enough" mental attitude. If you do
your best to have a
positive mental attitude and you still feel sick, well
then, you simply
aren't trying hard enough! No way to break THAT chain of
logic!
Ignore your friend's advice - she is
clueless."
"Your friend's email
bugs me too! I suppose this approach works for her, but I do not think
this is applicable for the FMS/CFS sufferers in general. However, this has
been the attitude many doctors have taken that I've visited and I must say,
it's very tiring. Like you, on the advice of said physicians, I
have taken exercise classes and fairly extensive therapy all to remain the
same or decline health wise. I have dealt with this
condition for at least 25 years and am in a terrible flare presently. This
journey has been long and exhausting.....your newsletter gives hope and
reassurance to so many of us fellow sufferers. God bless you for your commitment
to keep it going."
Til next time,
Dominie Soo Bush
FMS-HELP.com - My homepage has links to "100 Tips
for Coping with Fibromyalgia & Insomnia," plus many other
helpful and supportive articles.