DOM'S
NEWSLETTER
April 15,
2008
A compassionate and
informative newsletter for people with Fibromyalgia (FMS),
Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) or
Myalgic Encephalomyelitis (ME)
Topics are in PURPLE. Readers comments are in BLACK.
Dom's
comments are in TEAL.
Scroll down to read the 22 topics in PURPLE below.
1. READERS
WRITE
"Your website
www.fms-help.com is packed with
useful information and I learned a few things I hadn't
come across before concerning CFIDS and FMS."
"People who don't have fibro just don't get it and most
of them don't want to hear it. It's really sad that it is
not more recognized as it really is a horrible disease."
"I have suffered with fibromyalgia
many years along with the looks and remarks from people that think I am just
lazy."
"Thanks for the site - its pretty
amazing!!"
"I’ve just read your
100 tips www.fms-help.com/tips.htm and found them to be
very informative. I’m so happy to see that so many of your findings and
experiences are so like mine."
"I found
more info on your site www.fms-help.com than on any other that I have seen. I feel like it is a GOD
send."
"When I am feeling frustrated, depressed, in
pain, and sometimes hopeless, I know that I can read your newsletters.
They give such hope and are filled with such very useful
information. We can easily get stuck when our doctors
don't really have a clue as how to help us, much as they may want
to."
"God bless you for sharing your story
www.fms-help.com/fibro.htm and for being
so willing to help others through your own
experience with pain."
"Fibro seems to be a hydra
of a disease. Just when I cut off one head of ignorance, 10 more sprout
up."
"Thank you for posting such a
wonderful site!"
"I was finally diagnosed with fibro after
five years of being 'tortured' by doctors and being called a
hypochondriac on more occasions than I can to remember.
I've been on meds and antidepressants for years and
decided I can't take being numbed up anymore."
"I have been reading your website www.fms-help.com for several days and
have found it extremely helpful."
"Your site was wonderful in that it reminded
me I'm not alone. And put a face on a fellow fibro sufferer for
me."
"Thanks for sharing your story. The information on your website is invaluable and
educational - it can help soo many people who are feeling
overwhelmed, frustrated, and lost."
"Your site is wonderful and so
informative! God bless you for offering it!"
2.
VAXA
From a
reader--
"I have been taking Vaxa homeopathic remedies
lately for the fibro fog and fatigue to help me through all the demanding
details of my job and it has really been completely helpful. Here is a
link in case you are interested. http://www.add-adhd-help-center.com/index.html. It is a website primarily for ADHD but with fibro fog I might
as well have that too."
3. LYME
& FMS
From a
reader--
"From what I've read, the symptoms of the two
conditions are identical and many Lyme tests give false negatives, so people
spend years thinking they are living with fibro when really treatment for Lyme
would help them. Both my teenage daughter and I suffer from extreme
and crippling fatigue, body aches, muscles twitches, chills, neck aches and
pain, glands tender, lymph nodes tender, pains in bones, general feeling of
being ill. Fibro runs in my family (my sister has it) but the more I
investigate, Lyme disease seems to be a possibility. We plan on seeing a doctor, but I'm discouraged at how many don't test
for Lyme or take it seriously. Have you been tested or heard of other fibro
patients who ultimately turned out to be Lyme disease
sufferers?"
4. A
"REAL" DISEASE
From a
reader--
"Thank you for
the postscript to your newsletter www.fms-help.com/031208.htm (topic #25) about
how much you dream to be understood and have a 'real' disease. I
am completely on that page as well. It is just so frustrating to
have to explain over and over how tiring this stuff is. I went to
the dentist yesterday and halfway through the cleaning I was ready to stop
because I was just worn out from holding my mouth open. I (again) had to
explain about the fibro/myofascial. Sheesh! I wonder now if there is
information on what kinds of dental procedures can be done. I am having
old fillings taken out and I will read diligently through your archives on how
to deal with mercury as well as ask the dentist to do all she can to lessen the
impact."
Anyone have dental
suggestions? I hate going to the dentist (I'm dental phobic because my
childhood dentist would drill my teeth without novocaine.) Write
dombush@bellsouth.net
5. GLUTEN
Reader 1--
"I sure can
relate to the person who wrote to you about eating / not eating foods containg
gluten. I thought 'how in the world did my story get into this
newsletter?' One thing from my own experience I would like
to add is that once I went strictly gluten free...... I became MORE (if that is
possible) sensitive to gluten hidden in things, or accidentally eaten. A
few days ago I made a big pot of chicken and vegetable soup ..... home made, all
fresh ingredients and NO GLUTEN..... it was yummie. After dinner I decided I
would freeze up the left over soup in individual sized protions for future use,
but the soup was ultra thick, so I added a carton of (so called)
all natural chicken stock to the soup, and froze most of it.... kept a bowl
out for dinner the next night. Ate the soup next night - still tasted
yummie. About 3 am I woke up with screaming stomach pains...... bad
diarrhea.... endless trips to the bathroom..... followed by exhaustion and all
over (again) body pain............ IT SURE A'INT WORTH IT...... if you go gluten
free... stay that way... seek carefully for hidden ingredients in store bout
foods.... 'barley' was hidden in the stock I added to my
chicken soup....... NEVER AGAIN!"
Reader 2--
"Bless your
heart! WHAT on earth are you allowed to eat? Just reading
your post caused me to stress out. And how do you do it? I
mean, I LOVE my food....it is going to be very difficult to NOT eat my
grains, even though I know the outcome - but mainly because I know the
outcome is 'out there' and not immediate. If I had immediate results from
these new ways of eating, I am certain I could do it; but to do this day in and
day out and not know when I would have relief would be very difficult. My
hat is off to this reader. Does anyone else out there love her/his
food? I love to sit down with hubby and share a wonderful salad from our
garden; I love to slice a piece of cheese to eat with it; mmmmmm fresh fish he
caught on his last camping trip.....oh and when it comes to pasta, don't get me
started. I eat one meal a day....my meal with hubby. I do eat my
fruits and veggies when they are in season. I bet I sound like
I must not be all that bad if I am not willing to go through all of this
difficult change: the fact is that I do live in horrible pain; I
suffer from several auto immune diseases (arthritis, scleroderma, thyroid
disease, lichen sclerosis, raynauds, fms, cfids, etc) and DO want to
be off all the meds . But this sounds so HARD (yes I know, we
must want it bad enough) and I DO want it....but still I lack What it takes to
do this. I am going to search out the glutenfreeforum.com because I want
to know more....and I will go into it with a positive attitude, but I also know
myself...and shame on me, but this sounds so UNFUN.
(smile)"
6. PROF.
GARTH NICHOLSON
"I was wondering if anyone else has has
improved after doing Professor Garth Nicholson's protocol??? www.fms-help.com/031208.htm I was also wondering if his protocol is in
his book or is it on a special website or something??? I was in the air
force and received many immunizations and have been
diagnosed with Fibro, CFIDS and chronic Lyme disease so I was thinking his
book may be helpful, but would like to here if there are any others that have
read it and what they think before buying it! I've had a
cashectomy myself so I have to keep the spending down. -
Carolyn"
7.
TRAMADOL (ULTRAM) FOR SLEEP
From a
reader--
"I was prescribed Tramadol over a
year ago and I too find it very helpful. In my case it is used as a sleep aid -
one pill at bedtime as needed. My aches and pains stop so I sleep deeper if only
for the 4 hours. I suppose full dosage - 4 times a day -may be in reserve for
when I might need more. This medication even though it is not a narcotic can
become addictive. It certainly relaxes me and removes the pain. Because it has
Tylenol, be careful not to exceed the maximum dosage when combined with other
medications. Also Tylenol can have an effect on IBS.
This medication seems to reset my
sleep pattern after several days so that I do not need it every night …depending
on a lot of factors like seasonal, weather or stress levels of course! I
really do not like having to rely on meds but this is really helping me when I
need it most …for sleep. I suffer from one of the side effects: night
sweats!"
8. THE "SHAME" OF
FIBRO
From a
reader--
"I worked in the medical field for 25 years and saw the
development of this condition, but also was brainwashed by the establishment it
was just a bunch of lonely old women seeking
attention. Imagine my horror and 'shame' when I was
diagnosed 7 years ago. The treatments then were not very
effective and I continued to live my active life without help. My new
internal medicine doctor referred me back to the rheumatologist who really
believes the condition is real and has a convincing manner about him. His
research findings and his library of associated research went a long way to help
me dispel my belief that this is just a trash can diagnosis, employed by
unsympathetic physicians to shut up annoying troublesome patients."
9.
GLANDULAR FEVER / MONO / FMS
"I got an email from
one of the readers saying she also gets swollen glands every time she has a
"flare". I've actually now had swollen glands
for 4 weeks and fever too, and finally went to the doctor
yesterday and got antibiotics (which I always resist taking) for a latent sinus
infection. But I spent the entire night awake last night in huge pain in
all joints and eyes, and especially in my lower back, and it brings to mind a
similar episode from 1992 when I spent two whole weeks in bed with the exact
same symptoms, that doctors could not pin down to any reason, and did not know
how to treat except with vitamins. Was that, and is this a full-blown
acute fibro attack? I wonder. Very nasty though! When I had blood
tests done in 1992 all it showed was an excess of white blood cells - which
means infection of some sort - but no one knew where or why. What a mystery. I
also had another similar episode in 1990 which lasted only a few days, or maybe
a week, with the same blood test results - and the diagnosis was
glandular fever, which I have now discovered is the same as Mononucleosis in the
USA. Here we call it glandular fever. The doctor yesterday thought I
might have glandular fever but since I don't have a sore throat, just the sore
glands, that was ruled out. Interestingly, he said that glandular fever
never left the body once one had had it - it stayed with one forever.
So, are these acute attacks of Fibro, which the rest of the time is
just low-grade chronic? wish I knew. Anyway, back to work... on a Sunday... worked all of yesterday too
on this deadline for tomorrow. This is probably why I am sick, all
the stress. - Lara"
10. FORCED EXERCISE DOES NOT HELP
CFS/ME
Article from co-cure.com submitted by message
board member--
Why should ME/CFS-patients be cautious with
physical exercise?
Who risks decline after a forced
reconditioning
program?
______________________________________________________
Most
ME/CFS-patients have chronically activated immune systems, as is the
case in
Rheumatoid Arthritis patients. This problem is not detected in
routine
laboratory tests because these are mainly indicators for
inflammation and do
not reveal an altered 'innate immunity'.
Nevertheless, there are
laboratory tests available which indicate the
presence of these
maladjustments and which worsen under the influence of
physical exertion. The
parameters are: hCRP (high sensitivity CRP), elastase
(index of immune
activity), NO (nitric oxide) and presence in the serum of
DNA, RNA, LPS
(lipopolysaccharides), and/or antibodies for bowel bacteria in
the
blood.
If ME/CFS-patients are systematically examined for these markers,
one finds
that the majority of them have one or more abnormal values, and it
is
therefore probable that they will have a slow recovery after
physical
exercise. Furthermore, patients will sometimes feel worse after
exertion
because the underlying anomalies continue to become worse as a
consequence
of the physical exertion.
The case of nitric oxide (NO) is
interesting. As a result of disruption in
normal bowel flora in these
patients, there is sometimes an increased
NO-production by these bacteria.
Also, due to an activated nonspecific
immune system, the enzyme iNOS is
responsible for higher NO-values in the
serum. This, among other things, is
responsible for a lowered blood pressure
because it expands the larger blood
vessels. As a result, the peripheral
blood vessels must contract, which
causes a maladapted circulation in
different parts of the body.
Nitric
monoxide, or simply NO, plays an important role in physical exertion.
An
acceleration of the heartbeat causes the blood flow to increase. As
a
response to this, endothelial cells trigger a number of processes to
raise
the production of NO. This leads to several processes which
raise
NO-production and activity and keep it going: the eNOS (endothelial
enzyme
that stimulates NO-production) becomes more active and there is a drop
in
the inactivation of NO caused by a decrease in production of free
oxygen
radicals and by activation of the anti-oxidizing ESA. NO is toxic
for
natural killer cells and T-cells because they lose their ability to
function
if there is too much NO circulating. This is one of the
reasons why
ME/CFS-patients easily become ill after they have engaged in
physical
activity.
Sports is beneficial to healthy
individuals because NO has a protective
impact against arteriosclerosis and
bacterial infections. However, an excess
of NO is detrimental and patients
should be advised that physical exertion
has been shown to lead to a build up
of NO in people suffering from ME/CFS.
Furthermore, these patients
show exercise intolerance because the blood
supply cannot adapt to the
increased exercise-induced demand for oxygen in
the tissues
.
The case of NO is just one of the many imbalanced systems
which create
exercise intolerance and/or delayed recovery. Typically, an
ME/CFS-patient
of the Rheumatoid Arthritis type will have a much lower
exercise capacity 24
hours after undergoing an exercise test till exhaustion.
Also, a lot of
patients do not reach their target heart rate when they are
pushed to
perform an exercise test, due to muscle weakness or pain in the
lower
extremities. This muscle weakness is a result of the binding of NO to
the
ryanodine receptors in the muscles. The pain is a result of maladapted
blood
flow in the muscles of the same extremities, which results in a
premature
accumulation of lactic acid. A portion of the NO will oxidize: NO +
O2 ->
ONOO - (peroxynitrate). This is a very strong free radical which
damages
cell membranes.
What can we learn from this
?
ME/CFS-patients must *never *be forced to do compulsory
exercise; they must
listen to their bodies and not to other people who think
they know better
but are not familiar with the biology of these disorders.
Physical exercise
must be adapted to the individual, based on the severity
and consequences of
the illness. Therefore, the individual patient evaluation
should be
extensive, specific and adapted to the
disorder.
Leo Trower
References:
. Ito et al.
Cell.Immunol. 1996 : 174 ; 13
. Englebienne & De Meirleir 2002 - book
(291 pages) - CRC press
. Mihylova et al. Neuro.Endocrinol.Letters 2007 : 11
; 28
. Connolly et al. J.Appl.Physiol. 2004 : 97 ; 1461
. Sobko et al.
Free Radical Biology & Medicine 2006 : 41 ; 985
. VanNess et al. J.
Chronic Fatigue Syndrome 2007 : 14(2) ;
77
No wonder I don't do well with exercise
and often come down with viral illness after any kind of stressful or prolonged
exercise! After 26 years of this illness (onset was June 1982), I had
begun to think that exercise must somehow be "activating" a virus lurking within
somehow. I can do mild exercise - like walking - without negative
consequences. But I can't get damp and chilled, or be out in damp night
air without getting sick virally - sometimes for a week. People think it's
weird, but it sure is nice to know that researchers have an explanation for
this phenomena observed in CFS/ME
patients.
11. BLOOD VOLUME - SALT - SUGAR - JUNK
FOOD
From a
reader--
"I had fatigue for
years. I would feel fine as long as I didn't over do - and by over doing
that could have just be
a ten minute walk or going to
the mall and walking. As long as I did my regular house chores and
regular
job and didn't add anything to
it I was fine. If I did over do then I would get fatigue and it would take
days,
weeks or sometimes months to
get to feeling normal again. Finally my doctor put me on a thyroid
medicine
(Synthroid) and after being on
it two months I could do more and not get fatigue. (Note: I do know
the difference
between being tired and being
fatigued). I've been on the Synthroid about 4 years now. I am
overweight. My
eating habits are not good at
all. I've been trying to diet and every time I get on a diet and start
losing weight
I get fatigued again and then I
start eating in order to feel better. I go back to a high sugar
diet and I'm fine
in no time. All the
diets do this to me including high protein, low carb,
WW, calorie counting. I haven't told this
to my doctor because I'm afraid
he will think I'm crazy. When the fatigue hits me while I am dieting it
just
won't go away unless I do go
back to my junk food diet. It lasts all day and I wake up with it.
I'm pretty in
tune to my body and I notice
that when I start the diet and my body starts to lose excess fluid that's
when
the fatigue sets in. I've
tried buying exectrolyte replacement powder from the health food store but
that
really doesn't help
much.
My bloodwork is pretty
good. No anemia. Sugar level slightly high but no diabetes. I
don't have fibromyalgia.
I don't smoke, don't
drink. Most people go on a
diet and gain more energy and I seem to do the opposite.....
I haven't been excercising
because my weight is out of control and
I'm just not physically fit to exercise."
I do understand
what you are saying. I think CFS has something to do with blood
volume. As we lose fluid, that volume may go too low for us. I have
some info on my site about that. Go to www.fms-help.com/newsletters.htm - type blood volume in the search box. Once you get a page you
want, hit ALT-F and type in blood volume in that box. It will take you
directly to the place on the page where it is mentioned. Also, about the
sugar and junk food, I too have had to turn to sugar and/or junk food to get
energy back. I think it is because of high sugar and high salt
content. We may need the sugar because of hypoglycemia tendencies, and we
may need the salt to keep our blood volume from falling too low. These are
just my thoughts. I'm not a doc, just a fellow CFS sufferer.
One more
thought........anything that makes us feel depressed mentally (like dieting!)
can make our condition worse. We HAVE to keep ourselves feeling on the
happy side. For me and probably many others, junk food represents fun - it also
tastes good (ha). Perhaps the mental effect is just as important as the
sugar and salt. I know I sound like a weirdo saying this, but I think it
is true for me. And see Topic #10 (above) for why forced exercise does NOT
help CFS patients. Also see www.fms-help.com/trying.htm for why "trying harder" doesn't work
either.
12.
FINANCIAL ASSISTANCE AVAILABLE FOR PEOPLE WITH
FMS/CFIDS/ME
Contact: Dr. John Ivy FOR IMMEDIATE
RELEASE
Tel. 208/255-1216
Email: reachingoutsite@aol.com
FINANCIAL ASSISTANCE AVAILABLE TO
THOSE SUFFERING FROM
FIBROMYALGIA, CHRONIC FATIGUE
SYNDROME/ME
Chronically Ill People Now Have an
Emergency Fund to
Draw on During Times of Financial
Hardship
Chronically ill people generally have
little to celebrate about, but that’s all about
to change. Members of Reaching Out, a
website dedicated to helping those who
suffer from Fibromyalgia and Chronic
Fatigue Syndrome/ME, now have an
exciting program to rely on during
financial emergencies. The program, called
“Emergency Outtie Fund,” began in March 08
and is the brainchild of Karen
Clinton, Support Group Administrator,
Carrie Nelson, Editor of Reaching Out’s
free monthly newsletter, and Sparrow Ivy,
Website Administrator of Reaching
Out’s site at www.reaching-out.info. “We started the fund,” commented Sparrow
Ivy, “because we saw so many members
having to choose between filling their
monthly prescriptions or paying
rent.”
Of course, for many chronically ill, they
are no strangers to having to choose
between two necessary items. “You can
practically watch someone go through
the sad and unfortunate stages you went
through earlier,” commented Sparrow.
“It starts off with losing your sources of
income. Then there’s the loss of health
and life insurance, prescription and other
work related benefits. Then we quickly
deplete our savings and our friends’ and
families’ ability to help. Finally, we start
the process of deciding if we’re going to
fix our vehicle or buy that prescription.
After watching our Member’s go this bitter
process over and over, it became
unbearable, so we decided to start this
fund.”
Reaching Out was started in 2004 by a
small group of people who were battling
Fibromyalgia, Chronic Fatigue Syndrome/ME
and other associated illness. Their
services, all free, includes a website
which offers advocacy, small, email support
groups, links, current updates on
treatment and research, 24-hour chat and
bulletin board, and stories of courage for
all survivors. Also available is a terrific
free monthly 18-page newsletter which can
be seen in some of the best doctor’s
offices in the U.S. and Canada or sent to
an email address. They’ve won two
web awards and were listed in the top five
websites by Karen Richards on
About.com in 2007.
If you’d like more information about this
topic, or to schedule an interview, please
13. BACH
RESCUE SLEEP REMEDY
Has anyone tried
this? Also would like to hear from anyone who can explain to me what
Bach Flower Remedies are. I had a strange experience with a
chiropractor years ago in regard to these substances. Please write
dombush@bellsouth.net with any
info.
14.
DIFFERENCE BETWEEN FMS & ME/CFS
Post from a
message board user--
"Quoting from http://www.immunesupport.com/library/print.cfm?ID=8748&t=CFIDS_FM -
Some immediate differences regarding treatment stand out:
FM patients seem to do much better
at exercise than 'pure' ME/CFS patients. And the ME/CFS patients appear to have more problems
tolerating drugs." - The post continues with this comment: "I have the worst of both worlds... so to speak. FM'ers usually
have varying degrees of drug sensitivity but I always felt people didn't
understand me when I said my body just doesn't tolerate most drugs. So
many subtle differences but we all end up in the same boat. No wonder this is
so difficult for researchers. :) "
15. "WHO WILL END UP
TREATING FIBROMYALGIA"
A shift in thinking is underway.
With all the research showing fibromyalgia isn't rheumatologic but is actually a neurologic disorder, some
doctors say we should no longer see rheumatologists.
It makes some sense -
rheumatologists specialize in joints, bones and muscles. They're not experts on
how the brain perceives and processes pain. Neurologists are.
But will neurology
welcome us with open arms? Are neurologists thinking how nice it would
be to take on the challenge of fibromyalgia? Will their waiting lists
accommodate a huge influx of people?
Many of us have had bad luck
with GPs or internists. Do you suppose they're busily educating themselves so
they can diagnose and treat us effectively?
Call me a cynic, but I'd say,
not likely. Are we going to get stuck with primary care providers who don't even
believe we're sick? Are we going to end up without a "home" as the medical
community takes us out of the rheumatologic category without providing a viable
alternative? What's your opinion?
I'd love to hear from those
of you who already see a neurologist. How has your experience been? Do you think
you're treated more effectively?
http://chronicfatigue.about.com/b/2008/03/25/who-will-end-up-treating-fibromyalgia.htm
Interestingly, a reader on my message
board said she thinks fibro is a lymphatic and liver
disorder. I myself see a doctor of internal medicine
who manages my meds www.fms-help.com/what.htm,
and I think he is really smart. He was one of 3 doctors who worked in
the Capitol building in Washington, D.C. helping politicians who suffered from
stress disorders. He is sympathetic with my FMS/CFIDS symptoms and does
all he can to alleviate them.
16.
"WHEN ADVERTISING KILLS"
Advertising has been called
“legalized lying” by both H.G. Wells and Mark Twain. See http://www.mnwelldir.org/nw_current.htm -
This article targets the pharmaceutical
industry and their half-truths and lies about drugs advertised on TV.
Scroll down about 1/4 of the page to read the article "When Advertising
Kills." One interesting thing it says is that eating 20 cherries has the
same pain killing ability as taking an aspirin.
17. "DISEASE MAKES DUBIOUS DOCTOR A
BELIEVER"
Tuesday,
March 25, 2008
By Yvonne Betowt, Times Staff Writer, The Huntsville Times
18.
SINGULAIR LINKED TO SUICIDE
Singulair is a popular
allergy medicine.
19.
FORMER DRUG SALES REP TELLS ALL
20.
IODINE FOR FIBROMYALGIA
From a
reader--
"The reason I am
writing to you at this time is because of something that has come up recently in
our Fibromyalgia Recovery Group.
Last October, I came across some research being done on fibromyalgia by a group
of doctors who were using inorganic iodine as part of a treatment
program. I decided to attend a medical conference in Coronado, CA,
on “The Safe and Effective Implementation Orthoiodosupplementation in Medical
Practice”. Quite by accident, I sat next to Jorge Flechas, MD, at the
Friday luncheon. As we chatted, I discovered that he was doing a research
project with fibromyalgia patients and achieving astounding results.
He had been treating a group of fibrocystic breast disease patients with an
iodine/iodide combination (Iodoral) when one of them (who also had fibromyalgia)
commented that her fibro symptoms were going away. This reminded me
of Dr. Paul
St. Amand’s experience with the patient who had tartar on his
teeth!! [For the past 6 years, our group has focused on Dr. St.
Amand’s guaifenesin protocol for fibromyalgia reversal.] Dr. Flechas explained that he was now
treating a second group of patients, and he would be publishing a report
soon. I asked how long the treatment lasted, and he replied a few
MONTHS!! I was astounded—and intrigued. I went home
and did a great deal of study on the internet and, to my surprise, I discovered
that the principal researcher on this was Dr. Guy E. Abraham who was a Professor
of Endocrinology at UCLA at the same time that Dr. St. Amand was an Assistant
Professor of Endocrinology there. (The first
coincidence!) Secondly, I discovered that iodine was often “used to
treat gout” (like guaifenesin) and is mucolytic (like guaifenesin). (The
second and third coincidences!!) However, iodine is not a
medication. It is a nutrient required by every cell in our
bodies!! I put together a slide presentation which
explains a lot about the relationship between iodine and fibromyalgia---and many
other “modern” diseases. /www.fibromyalgiarecovery.com/Putting%20The%20Pieces%20Together.pdf
I think you will find this to be very interesting! And below is a
link to a sheet which compares the guaifenesin protocol with the iodine
protocol. www.fibromyalgiarecovery.com/Guaifenesin%20vs%20Iodine.pdf - Those of us who have been taking guaifenesin for years
have always wished for something that was easier (no need to avoid salicylates),
faster (months instead of years) and cheaper (about half the
price)!! Iodoral is an inorganic combination of
iodine and iodide. It can be taken with other medications and is available
without a prescription. I feel that it will increase the speed with
which people reverse their disease, as well as allow many to reduce the amount
of medication that they are currently taking. We have people who have been
able to reduce their thyroid medication, their insulin, their pain meds, and
their sleeping meds. Our Fibromyalgia Recovery Group is currently
working with Dr. Jorge Flechas (North Carolina), Dr. Guy Abraham (California),
and Dr. David Brownstein (Michigan), however we want to spread this information
to as many doctors as possible! All three of these doctors are
M.D.’s but Flechas and Brownstein are also more interested in natural therapies
after having become disillusioned with allopathic medicine’s reliance on
dangerous drugs. There
is now an entire website (other than mine) that is devoted to iodine
research: www.Iodine4health.com
21.
WORK FROM HOME IDEAS
From a
reader--
"I have received your
newletters and e-mails in the past. I just haven't been up to spending
much time on the computer. I did recently learn of some links to
legitimate information for those who may be well enough to work from
home and I wanted to share them with you:
1-800-571-2397
1-800-526-7234; TTY: 1-877-781-9403
1-800-619-0111
Those who are in the process of waiting
for disability may want to skip some of the above numbers and links unless they
are sure they are well enough to work from home since some of the above are
affiliated with the government. Maybe a happy solution to avoid
the oppressive process of having to file for disability."
22. DOM'S
UPDATE
Miracles do happen! I'm feeling
GOOD! My husband took a few days off from work last week, and I
was on Spring Break from the music school, so we went to the beach one day and to the County Fair the next! We had SOOOO much fun and I felt
fine. WOW!!!! For the first time in years, I haven't ruined my
husband's vacation time!! ! What a blessing to feel normal!
Temperature here in Florida last week was in the 90's - almost like
summer! My husband actually got quite sunburned doing yardwork
during his time off.
Well, all this feeling good doesn't come without a price!!!
I found that I have to diligently keep up with my meds and
supplements and also keep my stress levels
down. I often have to say "NO" 
to commitments that I'd much prefer to say YES to. This
can create misunderstanding, but I have learned that to have any kind of life at
all, I have to take care of myself. We fibromites are
not "normal" and can't do what normal people do and take for
granted.
My piano teaching
schedule 
www.fms-help.com/students.htm is
VERY full right now and I've also had a busy time recently as a church pianist
during the Easter season. But
I'm learning (slowly) to listen to my body when I am
tired (although I don't like what is says...ha!!!!!) It is my "Type A" nature to attempt to "push through"
exhaustion. Fortunately, I have a lot of "helps" (listed at www.fms-help.com/what.htm) that
usually can relieve my symptoms and give me added endurance and energy. It
took a lot of trial and error to find things that help me function and keep me
relatively comfortable despite this condition.
In 1990 my fibro was so
bad (onset June 1982), that just a few minutes of piano playing caused me weeks
of pain and suffering! I thought I would have to give up music entirely,
but now I play the piano all the time with no consequences. Once your health is taken away, and then given back, you really
appreciate it!!!! I am deeply
grateful.
My one bugaboo is that
I am still not able to travel 
very far at all. This is why we have to
"vacation" locally. For example, my husband and I drove 30 miles to a
neighboring city a few weekends ago, and by the time I got there, I was
exhausted. I do okay in my own community, and I know for this I should be
grateful. No problems going to Wal-Mart, church,
etc.
Some of you have been
following the saga of my dear sweet friend Curtis (age 86), with
whom I made a hymn CD in 2004. He called it "Curtis Jones Sings
Hymns: I'm 83 years old....this is the best I can do!" (He always
had a sense of humor!) Sadly, Curtis passed away last week. It was
heartbreaking to me and all who loved him. This kind
gentleman suffered many adversities and misfortunes in life, but he persevered
in faith and love. He was a great blessing and helped many people.
At the funeral Saturday, they played 2 hymns from his CD. (Not everyone
can sing for their own funeral!) Curtis's honorable life backed
up the lovely songs he sang and gave them credibility. His legacy lives
on through his CD. If you want a copy, please write me at
dombush@bellsouth.net. I
especially think the elderly will enjoy it. I don't know how long the
funeral home will keep his obituary and video online, but if you are interested,
go to http://www.broadusraines.com/index.cfm and
click on "Curtis Jones" on the right. At the end of his obituary is a link
to the video. The world is a poorer place without his loving presence, but we will meet again in heaven!
Faithfully
yours,
Dominie
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE
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.
