*** DOMINIE'S NEWSLETTER ***
SEPTEMBER 2004
DISCLAIMER: I am not a medical
doctor. I am a fibromyalgia/chronic fatigue syndrome survivor. The purpose of
this newsletter is not to diagnose or cure any disease or malady, but is
presented solely as food for thought. This information cannot take the place of
professional medical advice. Any attempt to diagnose and treat an illness should
come under the direction of a physician
Scroll down this page to
read Topics 1-10 below:
1.
LETTERS FROM READERS
2.
MELATONIN, 5-HTP AND MENOPAUSE
3.
DIGESTIVE ENZYMES HELP READER
4.
MEDICATION TIPS
5.
FMS/CFIDS MILLION LETTER CAMPAIGN
6.
SLEEP AND VITAMIN B6
7. DRY
MUCOUS MEMBRANES
8.
PROBIOTICS AND ANTIBIOTICS
9. IS
FMS LOW THYROID?
10.
UPDATE ON THE SLEEPLESS MAN
11.
PYROLURIA OR FMS?
12.
SYNTHETIC SUPPLEMENTS
13.
FMS/CFIDS DISABILITY ATTORNEY
14.
BALANCING THE IMMUNE SYSTEM
15.
"IMAGINE" WHAT IT'S LIKE HAVING FIBROMYALGIA
16.
EPSOM SALT BATH AND BOWEL DETOX
17. CAUSE OF CFIDS IS BACTERIAL
18.
NEW FIBRO BOOK
19.
HYSTERECTOMY AND FMS/CFIDS
20.
CFIDS NOVEL WRITTEN BY A MAN
21.
FROM DR. RODGER MURPHREE
22.
READER NEEDS ENCOURAGEMENT AND FEEDBACK
23.
FOOT INSOLES FOR HYPERMOBILE JOINTS
24. READER FEELING BETTER
25.
LETTER FROM A FORMER MEDICAL PROFESSIONAL
26.
FOODS TO AVOID WITH LOW THYROID
27.
ASPARTAME HORRORS DOCUMENTARY
28.
COCONUT OIL FOR FMS/CFIDS
29.
MED DANGERS
30.
CFIDS ASSOCIATION OF AMERICA
31.
MYCOPLASMAS AND FMS
32.
FMS IN BRAIN OR MUSCLES?
33.ASPIRIN AND NSAID DANGERS
34.
"AT HOME" YEAST (CANDIDA) TEST
35.
VITAMIN D OR SUNSHINE FOR MUSCULOSKELETAL PAIN
36.
READER ASKS IF PROGESTERONE CREAM HELPS FMS
37.
MASSAGE THAT HELPS FMS
38. A
REVIEW OF FMS-HELP.COM IS AT BELLA ONLINE
39.
SPIRITUAL UPLIFT CORNER
40.
DOMINIE'S PERSONAL UPDATE
1.
LETTERS FROM READERS
"I suffer from CFS and am amazed at the
wealth of knowledge on the web, yet people know nothing
about it. I was also
frustrated with doctors and friends who thought it was
all in my head.
Your website is
already on my favorites list."
"You have a great website http://www.fms-help.com for those of us
in
the same health situation as you, but, who are just learning how to
cope
with this problem. It is comforting to find that
others have
experienced the same, sometimes weird, symptoms,
that healthy people
can't relate to, and are dealing with them in various
ways."
"Thank you for all
of your HARD work and research for all of us who believe what you are
doing is a pure act of
kindness."
"I am frustrated because I
am not used to being told by doctors, who think they know
everything and
will not admit to when they are not sure, how my body is
reacting, when I am
the one who knows how its reacting."
"I have been using [the immune product you recommended] twice a day.
This has reduced my med intake by half--maybe
more. I am going to continue to take
it."
"I feel it is wonderful what you and Pattie are doing in
coordinating the million letter campaign http://www.fms-help.com/letter.htm that
is such a service you are offering to the people out there who need help.
It's sad but most people think chronic fatigue is laziness and
fibromyalgia sounds like a fancy name for "faker." People
do not show much respect to either condition. How can we build the most momentum
for the letter writing campaign?" [NOTE FROM DOMINIE: I am urging my newsletter
readers to tell people about this campaign, post it to fibro newsgroups, tell
other FMS/CFIDS sites you find on the net, talk to other sufferers, doctors,
etc. We need to get things rolling between now and May 1, 2005!
There are 6 million of us, so just a few hundred people sending letters will not
do the job!]
"MY FAMILY DOCTOR IS NOT INTERESTED IN
FIBROMYALGIA, EVEN THOUGH HE HAS
PRESCRIBED SOMETHING FOR NEARLY EVERY SYMPTOM. I TOLD HIM THAT I WAS
GOING TO HAVE TO GO TO A FIBRO SPECIALIST AND HE SAID THAT I SHOULD
DO
THAT. I EVEN OFFERED HIM A FIBRO BOOK THE OTHER DAY AND HE TURNED
IT
DOWN! CLOSED-MINDED, DOESN'T WANT TO LEARN ANYTHING NEW,
ETC. (IN ALL
FAIRNESS, HE'S A GERIATRIC INTERNIST PLUS I HAD LOANED HIM TWO OTHER
BOOKS A LONG TIME AGO (THE YEAST CONNECTION AND A PMS BOOK) AND HE
NEVER GAVE THEM BACK AND DIDIN'T EVEN REMEMBER MY GIVING THEM TO
HIM."
[NOTE FROM DOMINIE: We have all been in
this newsletter reader's shoes and it is maddening, frustrating and just
plain hurts! All the more reason we need to support the Million Letter
Campaign http://www.fms-help.com/letter.htm.]
"I wanted to tell you that
I found your website http://www.fms-help.com extremely
helpful and reassuring and I think you've done a wonderful thing by
sharing your story with us and giving us helpful information!"
"I have not written to you before, however, I want to let you know
that your newsletters have helped me in dealing with
Fibromyalgia. Keep us the good work. God bless."
"From South Africa. Thankyou for standing up for a case that so few people
understands or know about.
I have learned to suffer in silence but it takes its toll
on my everyday lifestyle, needs and the way I am dealing with those closest to
me."
2. MELATONIN, 5-HTP AND MENOPAUSE
From a newsletter reader--
"I was very struck by your comment on the
Melatonin and 5HTP NOT helping you, especially after your hormones changed due
to menopause. Although I am 35, I have been in surgical menopause since
30, due to endometriosis; I cannot tolerate HRT in any shape or form.
About a year ago I tried melatonin, and 5 HTP, what a disaster. They
worked in reverse and I was totally off the wall I was so hyper! I think
the health food store didn't quite know what to do with me! I was
fascinated to read your comment on the change of hormones potentially causing
the negative and strange reactions to such medications - it makes complete sense
to me!"
3.
DIGESTIVE ENZYMES HELP READER
From a newsletter reader--
"Thank you for your recent newsletter http://www.fms-help.com/July2004.htm.
You have helped me in the past with suggesting a superantioxidant, which has
helped my symptons. One thing I would like to share is talking a digestive
enzyme after a main meal, a Naturopath recommended it to me as she said it is
thought that fibromyalgia sufferers have an inability to process/absorb
essential minerals. I have found this to significantly improve my muscle
twitching/spasms, burning sensation, inability to sleep etc. I certainly
know when I don't take this at night. The product is called "Digestive
Enzymes" made by Solgar, manufactured in the USA. The Naturopath said it
is a high quality brand, on the front of the container it says "providing
digestive enzymes which breakdown (digest) proteins, carbohydrates, starches and
fats:
(Each tablet contains)
Dibasic Calcium Phosphate
225mg
Ox Bile Extract
130 mg
Pancreatin (4X)
equiv to 520mg of
pancreatin) 130 mg
Aspergillus Oryzae Diastase
65 mg
Betaine HCI
65 mg
Vegetable Powdered
Cellulose 64 mg
Papin
32 mg
Pepsin
Extract
30 mg
equiv to 100mg pepsin
Flavour (peppermint leaf powder) 25
mg
Vegetable Stearic Acid
22 mg
Silicia
11 mg
I take one after my main meal at night. The difference for me
has been significant and I feel now I can get on with my
life."
4.
MEDICATION TIPS
From immunesupport.com's Tip of the
Day--
Here are some tips regarding medication use
from Rosalie Devonshire, M.S.W., and Julie Kelly, M.S., R.N., from their book
"Taking Charge of Fibromyalgia":
-Never take your medications without
fluids. Take a sip of water first and then the pill.
-One of the possible side effects of tricyclics
could be a dry mouth. A dry mouth for long periods can increase the risk
of tooth decay, particularly in people with Sjogren's Syndrome, so do
not forget to mention this to your doctor and dentist.
-Do not put your meds in a medicine
cabinet that will be exposed to hot, humid temperatures. It is not wise to leave
them in your car or purse where they might be exposed to heat build-up.
-Give up caffeine! It alters
and interferes with your sleep pattern. Do not forget that there is caffeine in
tea, chocolate, and cola drinks. Also, many over-the-counter pain and cold
medications contain caffeine (check labels carefully).
-Alcohol interferes with your
sleep quality and does not mix with medications.
-Nicotine can affect the
effects of medications.
-If you are just trying a new medication,
ask for samples. Many FM patients complain that their drawers
are filled with unused medications.
5.
FMS/CFIDS MILLION LETTER CAMPAIGN
I want to say a BIG thank you to Pattie Caprio
and Nancy Bielik for all the hard work they did this past month in getting the
Million Letter Campaign flyers designed, printed and mailed to the fibromyalgia
symposium in Arizona. We all burned a lot of midnight oil getting this
project done. Nancy is continuing to offer her services to mail the flyers
to FMS/CFIDS groups and individuals who want to distribute them.
I also want to say THANK YOU to all who
responded with donations and/or advice for this campaign! I tried to send
a thank you email to everyone who contributed, but I just did not have
time because of the time-consuming work that had to be done on the flyers
this month. I am SO touched by the many letters that were sent
along with the donations! Some could only give a dollar (which is what
Pattie suggested). Others gave much more, as they were able. I am
keeping close accounting records of all donations. Unfortunately,
contributions are not tax deductible since we didn't set up a non-profit
organization (which takes loads of time and money).
Let me know of any FMS/CFIDS support groups or
organizations who want flyers. We are ready to send them to whoever asks
for them. Send me an email at dombush@bellsouth.net The MILLION LETTER CAMPAIGN is something we can
do TOGETHER to make a difference--not just for ourselves but for all those who
will develop this illness in the future! We need
ALL our voices to be heard on May 1, 2005. PLEASE HELP GET THE WORD OUT by
contacting fibro websites you come across on the net, telling support groups,
friends with FMS, etc. The information for this event is at http://www.fms-help.com/letter.htm
It is an extremely important for ALL
fibromyalgia/chronic fatigue syndrome sufferers. I love this quote that someone sent me:
"This is the one true
joy in life - the being used for a
purpose recognized by yourself as a mighty
one - the being
thoroughly worn out before you're thrown on the scrap
heap
- the being a force of nature instead of a feverish,
selfish little
clod of ailments and grievances, complaining
that the world will not devote
itself to making you happy."
George Bernard
Shaw
Below are letters I
received from readers--these are perfect examples of why we need to get
behind the Million Letter Campaign on May
1,2005--
From a former career
person--
"I have FMS /CFS and it has robbed me of my career."
From a pregnant lady with FMS
regarding her employer--
"Human Resources is not interested in the human aspect--I will
be forced to quit my job."
This one was about the logo
voting--
"We are victims...this comes to us out of the
blue and takes the doctors sooo long to diagnose it
and in the meantime we do alot of
suffering!! Also I chose this logo because
of the word UNITE. If we don't
unite to make the public aware of what it is and
how terrible it can affect our
lives...we will be living behind a curtain
for the rest of our lives!"
This one is from a disabled
R.N.--
"There are many more than "one million" FMS/CFIDS sufferers in
this country. NOW it is "our" TIME to let our needs be known.
To fight for our LIFE, until the battle is won. We need
to take action now, to offer hope to the millions after us who
will know that we had the courage to change the things we could, and the wisdom
to know the difference. We will not accept the things we cannot
change, until we have reached the few "good" men and women who have been
placed in positions of power, that govern with the COURAGE to change
the things we know they can! On May 1, 2005 we hope to know our true
advocates in order to support them in their support of all of us.
Ultimately, in GOD WE TRUST....... Now [after a career in nursing] I am one that
is "sick" and in need, and that is my reason for wanting to fight in
this battle with you, for you, and all the others. We must not LET GO, and
never give up HOPE. GOD BLESS PATTIE for using her limited strength to
share her talents and abilities with MILLIONS! (She is an example for all
of us to follow.) We all have something to share, and we all must
give what we can. And GOD BLESS DOMINIE for her selfless giving,
above and beyond, in order to lead by example, and
encourage the chronically ill to stay in the battle for LIFE. Praying
for more Faith, Hope, and Love, to fill our hearts, one day at a time,
as we learn to TRUST GOD."
From a former medical
professional--
"I have forwarded your Website for the FMS/CFIDS Million Letter Campaign
http://www.fms-help.com/letter.htm,
plus I have sent you a "sample" letter, to get your "take" on how it
sounds.
[NOTE FROM DOMINIE: See #25 below for her
letter.] I hope this will help. Your Website has
been a Godsend to me! It's filled with so many useful tips, and advice, and just
good to know that this illness is real, and that a lot of people besides me have
it! There will be strength in numbers!"
Suggestion from a reader about
the Million Letter Campaign:
"It will take months and years to get
them to open those letters. I understand the backlog of mail is tremendous
due to the screening for anthrax. If you use postcards or maybe oversize
postcards they will get through quickly." [NOTE FROM DOMINIE:
If you think this is necessary, then send postcards. It will be hard
to write much on them, but maybe enough can be said. Does anyone else have
information about this?]
6. SLEEP AND VITAMIN
B6
From a newsletter reader--
"To
sleep through the night, take Vitamin B-6 in the morning. It really
works!!!
Don't take it at night, though. If you do, you won't sleep a
wink."
[NOTE FROM DOMINIE: Different things work for different
people. For other ideas, see my sleep page at http://www.fms-help.com/sleep.htm
Lack of sleep is a BIG issue for most people with FMS/CFIDS. I've had a
sleep disorder for over 30 years.]
7. DRY MUCOUS
MEMBRANES
From a
newsletter reader--
"A daily dose of 'Nature Made' Soya
Lecithin (437 mg) & Choline (144 mg)
have eliminated my dry mouth, nose
and vaginal mucous membranes."
8. PROBIOTICS AND
ANTIBIOTICS
From immunesupport.com's Tip of the
Day--
While probiotics are especially
helpful in preventing antibiotic-triggered bouts of diarrhea, a daily supplement
can help keep your digestive system in working order and may even stimulate your
immune system. Research has also shown that probiotics may treat irritable bowel
syndrome and yeast infections. (Source: Body & Soul magazine, Sept-Oct
2003.)
9. IS FMS LOW
THYROID?
A newsletter reader sent in this
question and this link:
[NOTE FROM
DOMINIE: I've reported on Dr. Lowe several times in past
newsletters. Thought it deserved another mention here. Seems that
many people have plausible theories about what causes FMS/CFIDS. I have my
own theory--mycoplasma infection.]
10. UPDATE ON THE SLEEPLESS
MAN
About 2 years ago, I sent out an
appeal for a man who had not slept in several years. Your outpouring of
responses and suggestions were most heartening and he tried many of your ideas,
but sadly to no avail. People still ask me about Jon, so below
is his most recent response (when I asked him what his present doctor
was recommending):
"it would take too long to
explain
hormones
vitamins
immunotherapy
diet
so far $1,000 a month
no significant result
just waiting to die"
[NOTE FROM DOMINIE: Please keep Jon in
your prayers. Jon and so many others who are suffering are the reason we
all need to participate in the Million Letter Campaign. We are not
alone! Read more at http://www.fms-help.com/letter.htm
We can speak with ONE VOICE! More research needs to be done on FMS/CFIDS
and disability claims need to be taken seriously by lawyers and doctors.
Most of us with FMS/CFIDS have been cut down in our prime of life by this
unwelcome intruder into our lives.]
DISCLAIMER: I am
not a
medical doctor. I am a fibromyalgia/chronic fatigue syndrome survivor. The
purpose of this website is not to diagnose or cure any disease or malady, but is
presented as food for thought. This information cannot take the place of
professional medical advice. Any attempt to diagnose and treat an illness should
come under the direction of a physician. No guarantees are made regarding any of
the information in this
website.
Work from Home in Your Pajamas!
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