***
DOMINIE'S NEWSLETTER ***
NOVEMBER 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 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 newsletter.
Scroll down to read Topics 1-14 below--
1.
LETTERS FROM READERS
2. FMS/CFIDS MILLION LETTER CAMPAIGN UPDATE PLUS
T-SHIRT AND SWEATSHIRT INFORMATION
3.
FOOD ALLERGIES AND FMS
4. DOCTOR SAYS VIRUSES CAUSE FMS
5.
TREATING AND BEATING FMS AND CFS
6.
MASSACHUSETTS NEUROLOGIST
7.
RELIEF FROM FIBRO BY AVOIDING EXCITOTOXINS
8.
NATURAL VIOXX ALTERNATIVES
9.
SLEEP PATTERNS
10.
VAGUS NERVE AND STRESS
11. A
HUSBAND WITH FMS
12.
STOPPING ASPARTAME HELPED READER'S FMS
13.
THE 10 MOST DANGEROUS TOXINS IN YOUR HOUSE
14.
VITAMIN C
15.
MEMORY FOAM MATTRESS
16.
FLU SHOT?
17.
COLD SORES
18.
(topic removed)
19.
MONOLAURIN
20. TV
SHOW ABOUT FMS
21.
HOW BOB CURED HIMSELF OF CFS AND IBS
22.
ANESTHESIAS TO AVOID IF YOU HAVE CFIDS
23.
A.D.D. AND FIBROMYALGIA
24.
BOOK WRITTEN BY HUSBAND OF A FIBRO SUFFERER
25.
ESSIAC TEA
26.
GETTING DISABILITY FOR FMS/CFIDS
27.
NAC FOR IMMUNE SYSTEM
28.
HOW TO FIND A GOOD DOCTOR
29.
CYMBALTA FOR FIBRO PAIN
30.
MOLD AND FMS/CFIDS
31.
VACCINATIONS AND CFIDS
32.
FACES OF FIBRO - YOUR STORY IS REQUESTED
33.
DESK YOGA
34. CF
ALLIANCE ESSAY CONTEST
35.
GRADUATE STUDENT NEEDS HELP BY NOV. 24
36.
SPIRITUAL UPLIFT CORNER
37.
DOMINIE'S PERSONAL UPDATE
1. LETTERS
FROM READERS
"I stumbled on your site by accident tonight and found it very good, I added you to my
favorites. I was dx with fibro 15+ years ago, they didn't call it
fibromyalgia back then. I really think I have had many of the
symptoms back to childhood and through my teens. I am retired on SSD due
to Fibromyalgia. I was [in a highly stressful professional job] and
the stress was taking over my life. So was the fibro...I
had no choice after 20+ years and total fatigue, depression, chronic pain...you
name it!"
"So happy to come across your site and know
there is someone else out
there that is battling this demon besides me. I am
57 yrs old and was
diagnosed about 2 yrs ago...I know there is alot
of
info on the internet about fibro but sure is different when its
more
personal....I am reading all your site...very helpful,
especially the natural
approach tips http://www.fms-help.com/tips.htm"
"Thanks again for helping me see the light at
the end of the tunnel, and
helping me believe that if we make a few changes
in our life, believing and
following God, getting back to the basics of
life, and taking time for
ourselves, makes all the
difference in the world."
"I have found many things on your
site to help me understand this illness. I
subscribe to many newsletters which repeat the same info, but your newsletter
seems to have additional info I haven't seen elsewhere.
Let's hope there will be a better understanding and acceptance for FMS/CFS/ME so
we don't have to keep validating our illness to all the different doctors we
continue to seek."
"There is so much to read on your webpage http://www.fms-help.com I think its
about the best I've seen. You certainly have run the gamut of
treatments and meds! Thank you for all the work and research
you have put into this."
"I have been feeling alot better in the last
three months. I have made so many changes in my life style lately. I
have followed alot of your tips http://www.fms-help.com/tips.htm
and I want to THANK YOU!!!!! so much for giving me back my life, and help
me realize how sick my body and mind really was."
[ABOUT MY HUSBAND'S ARTICLE IN THE
OCTOBER ISSUE http://www.fms-help.com/October2004.htm]-- "I was going through my emails and when I saw that
Don wrote....that was the first thing I went to. I was curious!!!!
He is a wonderful and insightful man. I
am so glad that you have him in your life! I think that it was great
that he wrote and he should continue so that newsletter readers can take
that portion to share with their significant other. It is one thing
to read about FMS/CFS when you have it but to read about it from his
perspective is a way of reaching out to those who feel helpless to the
ones they love. Thank you, Don." |
"I apologize for the delay in my response
to your email. It is difficult somedays to get it all done. I have visited your
links and am very happy to be a part of this plan to write the million letters
campaign http://www.fms-help.com/letter.htm
Our first support group meeting is this
Saturday. I am excited and will share all of the information I have been
collecting with the group. I was only diagnosed a couple of months ago with FM,
CFS & OA all the same day. It has changed my life more than
anything I have ever encountered."
"I was diagnosed years ago and told nothing can be done. So I have
lived with it. Got to the point recently that "living with it" was
no longer reasonable or do-able. This evening I came across your
website accidentally. God bless you for what you have suffered, and
what you are doing to help everyone else."
"I call your newsletter 'my fibro
guardian angel.' It has helped me so very much."
"I found your site by
accident several weeks ago and put it in my favorites. I came across it
again today and have spent most of the day reading it. It is truly
wonderful! I especially wanted to thank you for your Marital Harmony
section http://www.fms-help.com/marriage.htm.
Every point you made rang true. I will read and re-read those words many
times. You may have saved my
marriage!"
"I e-mailed my husband the poem from your website
"My Name is Fibromyalgia" [by Terri Been] http://www.fms-help.com/mnif.htm I know that this will give him perspective from a voice
other than my own. Your site has lifted and encouraged me...strengthened
me and held me steady. Mostly, it's given me a place to rest when
I'm tired and misunderstood. Thank you for providing a home for
all of us FMers to meet in."
2. FMS/CFIDS MILLION LETTER CAMPAIGN UPDATE PLUS T-SHIRT AND SWEATSHIRT
INFORMATION
See http://www.fms-help.com/letter.htm for details of the exciting Million Letter
Campaign that will help all of us with fibromyalgia or chronic fatigue
syndrome. There are now 12 ladies on the MLC Team working very hard
to get the word out to support groups, doctors, FMS/CFIDS organizations,
newsgroups, etc.
Below are some comments from the
ladies working on this campaign--
"This is taking off isn't it? Of course
people are excited about this. Who could blame them. This is an
awesome labor of love and I am sooooo PROUD to be a part of
it."
"I am excited about MLC and got fired up when
Pattie suggested sending letters to TV shows.
We have gone through difficult
years not knowing what my husband had and we both needed the strength and energy
to raise the children and have been discouraged by people around us who don't
understand what he was going through and that he cannot work. People need to
know!!! And that is what MLC is for."
We are asking all FMS/CFIDS sufferers to
write a one page letter, make 5
copies and send them to the 5 addresses listed at http://www.fms-help.com/letter.htm on MAY 1, 2005. Complete directions are on the website.
PLEASE SEND THIS WEB ADDRESS TO ANYONE YOU KNOW WITH FIBROMYALGIA OR
CHRONIC FATIGUE SYNDROME. We need everyone's participation
for this to be effective. We will all speak with ONE VOICE.
We are hoping for national recognition and a greater
awareness of FMS/CFIDS!
3. FOOD ALLERGIES AND FMS
From a newsletter reader--
"Just wanted to update you on my condition
since it such a miracle to me. My internist tried everything possible to find
out what was causing my FMS/CFIDS so he finally did a extensive food
allergy test on me. It turned out I was allergic to more food than I was able to
eat but I set out on the food detox program. For two wks the withdrawal
was torture but after that, I began improving to the point of disbelief.
I have no muscle pain, no arthritis pain,
well, to make this short, I have no symptoms whatsoever of what was dogging me
since 1983!!!! It's like a miracle. The only thing I have left to cope with is a
nagging pain in my right lung area that we can't seem to get rid of. We can't
find what's causing it, but with all the other pain gone, it's like I have a new
life anyway. I'm getting to do things I haven't done in years. Plus, I've lost
83 pounds. I never could lose weight before even though I didn't eat very much
food. No one believed me. I eat the same thing I ate before!!!! But now, the
weight is dropping off. I still don't exercise, but can't get around much better
than before. Exercising will come in only a matter of time.
There may be something to this food allergen
thing!! Maybe more should look into it. I've stuck right with the limited food
program the Florida test laboratory made for me. It's worth it to have my life
back."
4. DOCTOR
SAYS VIRUSES CAUSE FMS
From a newsletter reader--
Illinois Doctor Gives Hope to Fibromyalgia
Sufferers
09-22-2004 Local Doctor Gives Hope To Fibromyalgia
Sufferers
Reporter: Shannon Samson
New Media Producer: Kerry
Corum
An Evansville, Illinois physician is going to the American Academy
of Pain
Management conference in San Antonio Wednesday, to present what could
be a
breakthrough finding. He suspects the chronic pain of diseases
like
fibromyalgia could be caused by a series of
viruses.
Anita Held, 64-years-old, needs a basket to hold all
the pills she needs to
get her through the day. Fibromyalgia leaves her sore
all over and
constantly tired. She says, "Breathing is an effort, just moving
the least
little bit is just an effort. So some days I actually will sleep
all day
long."
Pain specialist Dr. David Johnson
realized the fatigue, aches and chills
many of his patients describe are the
same symptoms that come with a case of
the flu. So he had an idea: What if he
tested them for some common viruses?
"I went through and listed about three
or four viruses, and didn't even know
if the labs could test for them, and my
gosh, they came back positive."
He eventually came up with list
of 17 viruses and found that his
fibromyalgia patients were all
testing positive for anywhere from three to
nine viruses each. Dr. Johnson
believes their immune systems aren't
recognizing the viruses as pathogens and
as they steal cell material to
replicate, the patient is left with a host of
ailments. He's prescribing
anti-viral medications to try to suppress the
viruses, which can take years.
In the meantime, Johnson says, "I want to
get the word out to physicians to
test for the virus, use the anti-viral
medication and let's all have some
input and see if we can eradicate this
condition."
That would be a dream come true for Anita Held, who just
found out she has
three viruses. "I am glad they found something, because now
we have
something to work with, is the way I look at it. That's not bad
news."
She says it's good news to think maybe someday she could spend
more time
with her grandchildren without getting too tired.
So far, 26
of Dr. Johnson's patients have tested positive for up to nine
viruses. He
says six are responding well to anti-viral medication.
Besides
fibromyalgia, the treatment is also helping sufferers of chronic
fatigue and
irritable bowel syndromes.
Dr. Johnson outlined a list of the viruses
he's testing for in fibromyalgia
cases:
*Epstein Barr virus
EBV
*Cytomegalovirus CMV
*Herpes virus: 8 types
*Parvovirus B
19
Norwalk agent
*Rotavirus
*Enteric
Coronavirus
*Enterovirus
Astrovirus
Calcivirus
*Varicella - Zoster
virus VZV
Torovirus
*Adenovirus
Picovirus
Pogosta virus
Sindbis
virus
*Coxsackie A and B virus
*The most frequently involved virses.
Most patients will have from three to
nine of these viruses at abnormal
levels.
For more information on Dr. Johnson's research, contact
his office in
Illinois at 812-425-2662.
Source: All content ©
Copyright 2000 - 2004 WorldNow and WFIE. All Rights
Reserved. The original
article is posted at:
http://www.14wfie.com/Global/story.asp?S=2271049&nav=3w6rQvkD
5. TREATING
AND BEATING FMS AND CFS
From a newsletter reader--
"I am 65 and have had FMS for 8 yrs. It
cost me my marriage, my professional career--just about everything! I have
been taking Dr. Murphree's supplements for the past 3 month (author of "Treating
& Beating FMS & CFS") and cannot believe that I am 60% better; have also
been on a rotation diet and eliminated sugar, caffiene, gluten, dairy products
from my diet and am not feeling deprived. So I totally agree that
MEDICATIONS don't address the problem!"
6.
MASSACHUSETTS NEUROLOGIST
From a newsletter reader--
"i have talked to the neurologist in
massachussetts who has found a number of us with fm/ cfs to also have multiple
sclerosis. he has given me the go ahead to share his name and address with
you. he is dr baharani padmanabhan.angels neurological center, 144 dean
st, taunton, ma. phone 508 828 1212. to make an
appointment to see him plz call 781-781-3773. he believes that
there is an underlying inflamatory process causing many major autoimmune
problems. he believes that fm/cfs is just another expression of this unknown
disease. many people can develop more than one response to this
inflamation. for example; you could have fm, sjogerns, and ms
along with thyroid problems all at the same time. conversley just
because you have fm/cfs doesn't necessarily mean you have or will devolop ms.
this is a good point. he uses brain mri s to
confirm his diagnosis. he told me to look up a recent article by dr robert
grossman in the 01-04 edition of the american journal of radiology. it has some
interesting info about fuzzy gray readings to the myelin areas of the
brain. i haven t located the article yet. when i do i'll contact you. i
like him alot. he uses regular ms treatments to help reduce the overall
inflamation in our bodies. i'll let you know how they work. where
most doctors ignore our pain, he is very aware of it and seriously tries to help
us. he has even referred one of his clients to my support group for nonmedical
help with her suffering. very unusual for an m.d. to do. hope this
can help someone. ma cfs/fm support group"
7.
RELIEF FROM FIBRO BY AVOIDING EXCITOTOXINS
A newsletter reader found this is her
answer for stopping FMS pain--
8. NATURAL
VIOXX ALTERNATIVES
From a newsletter reader--
"I have used several great combinations of
anti-inflammatory alternatives for several years for different
areas of inflammation, & the stores are stocked with combinations that
individuals should research & read up on for themselves for their own
particular problem. The best thing I've found for pain is simple
enteric coated aspirin or ibuprofen; both better than Vioxx!
Never bothers your stomach because it opens in the intestine, not the
stomach, & comes in generic & is much CHEAPER than prescription drugs
& has no side effects if used correctly! The other pain &
anti-imflammatory alternative I've found to be very good is bromelain - on an
empty stomach! In this capacity it MUST be taken on an empty stomach &
works wonders for me & several others I have recommended it to. For
best results take it with Super Oxide Dismutase, Vitamin C, L-Cysteine &
your regular dose of calcium and magnesium. Remember that iron blocks the
assimilation of other minerals, so keep any doses of that far away from the
calcium & magnesium. I make up my own herbal anti-inflammatory now
that is a combination of Cat's Claw, boswellin, willow bark, turmeric,
codonopsis & feverfew. There are many books that help you
and I recommend 'Herbal Prescription" by Phyllis Balch and Linda Rector Page.
I must say that anyone who
owns the 2-volume set of Public Citizen's Health Research Group's book
"WORST PILLS, BEST PILLS" doesn't have problems with bad prescription
drugs because this valuable guide tells people 60 years of age and over (the
most over-drugged people on the planet) what is good for them and what is not.
It also gives the truth about these drugs (for the rest of the
population), including, when appropriate, what would be better to take for the
same problem. The pharmaceuticals have put so much garbage onto the market
that hasn't been tested properly or has tested adversely & the bad tests
were withheld, that Health Research recommends no new drug that has any question
about its safety and efficacy, be taken until it has been out 5 to 7 years and
proved itself. [You must remember that the pharmaceuticals' concern is
their bottom line, & their whining about how much research costs falls on a
deaf ear where I'm concerned because our tax dollars pay for most of it &
these corporations make multi-billions of dollars a year in profits and are
still subsidized by the government!] These books are available from
www.worstpills.org. A membership to
Public Citizen and Health Research for one year, with accompanying monthly
newsletters, is just $35.00. I can't recommend them enough. Public Citizen
is the group that first tried to make the car manufacturers put in seat belts
and air bags, and when the National Institute of Health used taxpayers' monies
to do the main research on AZT (a drug for HIV/AIDS) and the NIH then gave it -
gratis - to Burroughs-Wellcome, a British drug company, Public Citizen sued to
stop them! They lost after climbing the 'justice' ladder, but these things
I mention are just the tip of the iceberg of what they have done representing
the American public. I absolutely refuse to take a prescription drug
unless it is a life-threatening situation. I have gotten rid of 2
different kinds of cancer, grand mal epilepsy, arthritis & pneumonia on my
own with herbs, diet, exercise, visualization &
supplements. I hope this is of some help to
someone."
9. SLEEP PATTERNS
From a newsletter reader--
"I just read this and it is soooo me.
No wonder I'm such a night owl
lately but can't get up in the
morning...."
alteration of sleep cycle. This is being
tired in the morning and perking up late at night. The person would prefer to go
to sleep at 3 A.M. or so and get up at noon."
10. VAGUS
NERVE AND STRESS
A newsletter reader found this on the
net--
"I cannot emphasize enough how a
hidden hiatal hernia also can deplete
the adrenals, and cause poor stress
tolerance, anxiety or depression.
This could be present from the
trauma of birth! The person will not
be breathing right; the vagus nerve
will be over-reacting. In fact,
recent research indicates that it is the
vagus nerve that is the
body's master stress interface. The state of
the vagus nerve
determines your "vulnerability to stress," and your
"reactivity to
stress." But the Vagus nerve is pinched from a
hiatal hernia, which
one expert says 85% of the population has. Over 90% of
my clients
have a hiatal hernia! The vagus nerve connects or interacts with
many
other organs and nerves-the whole body is out of synch. The heart may
be pressed against and will not beat optimally. An over-reactive
vagus
nerve, I have found, is a major causative factor in food,
chemical and
electromagnetic allergies! Everyone need to learn how
to test and correct
this hiatal hernia/hyperexcited vagus nerve
syndrome, or
else the adrenals will continue to weaken."
11. A HUSBAND WITH FMS
"Now try to imagine
the reverse when the husband has FMS--a so-called woman's disease. I have
to pretend nothing is wrong even when I feel like collapsing. I have to be
strong for my kids and my wife when I can hardly keep going some
days. My son has sensed something isn't quite right with me
without having to tell him, and he seems to understand most the time. But
I can still see disappointment in his eyes when I decline playing catcher (he's
a pitcher) due to the pain in my hands on some days. And that hurts
me more than the physical pain does. So sometimes I just endure the pain
and do it anyway.
One negative effect on
my marriage (there have been many) is that I find myself being less
than tolerant when, after keeping up with my chores even though the pain has me
in a fog, then I find my wife sitting in front of the TV and none of her chores
even started. Although that might irritate most people, it goes beyond
that sometimes when I've endured so much pain to get my chores done.
These are just a couple of
examples. Since I'm the bread winner with so much is expected
of me that I just keep going somehow. My 3-point therapy
(nutrition, exercise, & flexeril) is the only thing keeping me in the game
most days. Take any one away and I can't take enough
Tylenol."
12. STOPPING
ASPARTAME HELPED READER'S FMS
From a newsletter reader--
"I came across your site http://www.fms-help.com a couple of months ago and really enjoyed it. I was
diagnosed in March of this year and I had been going downhill ever since.
In September someone gave me an article on aspartame in diet soda and
other diet products. I was an avid drinker of diet soda so I went off
of it. I would say 75% of my pain has subsided and I have more
energy. I also have come across a chiropractor in WI which works with
fibro patients and he has helped immensely. So I am back on the road to
better health. Thought you would like to know which options helped
me."
13. THE 10
MOST DANGEROUS TOXINS IN YOUR HOUSE
From a newsletter reader--
14. VITAMIN
C
From a newsletter reader--
"Taking 500 mg of Vitamin C with fruit before
a breakfast of eggs every day and will also. Wait 30 minutes before eating
after taking vitamin C and eating fruit. When the feeling of conjestion or
illness begins increase to 1000 mg of Vitamin C with fruit every 4 to 6 hours
until illness or conjestion disappears. If too much is taken very loose bowls
happen. Also, doctors on various websites have stated that it prevents polio and
west nile virus and distemper in dogs from taking hold on our bodies. This
information my general practitioner adviced for me to do since my immune system
is weak. It has really worked for me. Our area is infested with West Nile
infested mosquitos."
Dominie's homepage - http://www.fms-help.com -
My personal FMS/CFIDS story, 100 tips for coping, 50 signs
of fibromyalgia, emergency marriage manual, plus other helpful articles offering
compassion, support and encouragement for people with Fibromyalgia and
Chronic Fatigue Syndrome.