DOM'S
NEWSLETTER
November 12,
2009
A Christian-based newsletter for people with Fibromyalgia
(FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS),
or Myalgic
Encephalomyelitis (M.E.) and their families.
"For which
cause we faint not; but though our outward man perish, yet the inward man is
renewed day by day. For our light affliction, which is but for a moment,
worketh for us a far more exceeding and eternal weight of glory; While we look
not at the things which are seen, but at the things which are not seen: for the
things which are seen are temporal; but the things which are not seen are
eternal." II Corinthians 4:16-18
15 TOPICS - don't miss the RED
ONES!
1. READERS
WRITE
"Your website www.fms-help.com is very helpful, and I think it would be a great help for
someone who has recently been diagnosed with fibro and has no idea what
to do or what options may be out there for them."
2. TEST AVAILABLE FOR
XMRV
From a reader--
"Wanted to pass along this press release about
XMRV: http://www.redlabsusa.com/press/ - Viral Immune Pathology Diagnostics (VIP
Dx) announces the introduction of its family of diagnostic
tests for the Xenotropic Murine Leukemia Virus-like Virus for
XMRV associated neurological disease
(XAND)."
FROM DOM: I have been reporting on the XMRV
retrovirus in recent newsletters www.fms-help.com/newsletters.htm
- XMRV may be the culprit in FMS, as well as CFS - see articles
below. If anyone has the XMRV test and wants to report about it, please
write dombush@bellsouth.net.
Here are the articles sent previously - one of the main things to be
gained is that this illness is NOT psychological or psychiatric - we are not
malingerers or hypochondriacs!
3. ENCOURAGEMENT FOR
MOMS WITH FIBRO
From a reader--
"May I share a few words for you to pass on to the mom who
wrote about her life wreching insomnia? I so well understand the horrible
struggle of that and how terrible it is to struggle through life, day by day, in
severe fatigue. I too hate that feeling above all - even more than the pain.
From one mom to another, I want her to know how it can be so easy to let the
enemy use guilt to make us think we can't be a good enough mom for our children
due to our FMS. For years I lived w/ so much depression over the fact that I
couldn't be the mom my children deserved due to my illness. I beat myself
up daily over how I would do so much better if I just had some energy. I have
cried many times because I feel so sad that my children are stuck with "a mom
like me". Few people talk about the emotional and mental challenges of
being a mother while living w/ CFS/FMS. It's heartbreaking to not be able
to get down on the floor and play with your children...to fall asleep next to
them at night while trying to read their bedtime story, unable to finish...to
not be able to get a decent meal on the table...to hear my children beg me to
play outside with them or take them to the park when I don't have the energy to
even get out of bed. I've cried on my DH's shoulder many times about these
issues and I'm most fortunate that he lets me cry on his shoulder and he cares.
One day in tears I said "I just wish I would die because you and the kids would
be so much better off without me". He then said some things that opened my
eyes. He reminded me how because of my lack of energy, our children aren't
run all over town to endless activities as most kids are. Because I can't
get out of bed many days, they come snuggle with me and we read books together
often and they treasure this time with me. Because I can't do everything
that needs to be done around the house, they are learning, as children should,
how to take responsibility and pitch in for the good of the family. My
husband told me that though I can't get down on the floor and play with my
children, we have a heart connection that is very special because I have time to
listen to my children and really get to know them on a deep level.
We made a list of the ways that God has used this illness to bring special
blessings to my children, my husband, me, and our family. When the enemy
tempts me to feel defeated and devalued as a parent because of this dreaded
disease, I get that list out and read it and it really helps. Would you
share this with the mom who wrote that email or post it in your next newsletter?
I want moms to know that God promises to use ALL things to good, and He will
bring good even out of our parenting w/ FMS/CFS if we just give it to Him and
trust Him. It's not easy and there are those days I feel really sad that my
children are "stuck" with a sick mother, but if I tell God how I'm feeling,
He's quick to show me all the blessings in it and encourage me."
FROM DOM: I hear from
many moms with fibro who need these encouraging
words!
4. MERCURY REMOVAL
HELPED
From a reader--
"I had all my mercury fillings removed about 7 yrs.
ago. While it didn't "cure" the CFS/fibro, I definitely feel like there
was an improvement .... at least for me. Perhaps a 40-50%
improvement. I still have to carefully pace myself, but the major flares
are fewer and further in between. I still am unable to exercise, and I
also have to schedule rest periods in between each small activity ... but
overall, having the filings replaced was worth it to me.
Please tell your readers that it's absolutely imperative that they have the
mercury fillings removed by a dentist who is knowledgeable in this area.
There are still dentists out there that swear mercury fillings are
harmless. Have your readers "interview" the dentist prior to letting them
remove the fillings. In order to do this procedure, they must use the
correct equipment and precautions or the mercury will be absorbed, swallowed,
and breathed right back into their bodies as they drill the particles out.
You need to make sure that the dentist puts goggles on you, and a special "dam"
in your mouth so the mercury particles are not swallowed. The whole
purpose is not only to get the mercury out of your teeth, but out of your body
as well.
It would be smart to first have your doctor do a blood test to measure the
amount of mercury in your bloodstream. The mercury content in my
bloodstream was about 10x the amount it should have been. In fact, my dr.
said that it's actually rare for someone to have such high mercury levels.
He told me he didn't think having the fillings removed would 'cure' the
CFS/fibro, but he said it would definitely help. And he was right ... as I
said before, I improved by 40-50%.
When I had the first few fillings removed (about 6), the first dentist I
went to did not follow the correct protocol and I paid dearly for it. For
4 solid months, I had the most horrible vertigo that never went away. I
found out later it was because drilling the mercury out, let it spread
throughout my body (by breathing it or swallowing it). So, the when I had
the rest of the fillings removed, I went to a dr. who was well schooled in the
proper technique and I didn't have ANY dizziness/vertigo after he removed the
fillings.
It's very pricey to have it done. I think I had about 14 fillings
removed and replaced and it cost me about $3,000 to do it.
Also, after having it done, I went to a naturalist doctor who is also an
M.D. He gave me a prescription for chelation so that it removed the rest
of the mercury from my body.
So, here are the steps your readers need to take if they want to do
this: 1. Have your dr. do a blood test to see how much mercury is in
your body. 2. Find and interview dentists who know how to use the
correct protocol in removing the mercury fillings. 3. Find a
naturalist dr. (preferably an M.D.) and have him give you the prescription for
10 days of chelation."
5. ANTIBIOTICS FOR LYME &
AMALGAM REMOVAL DID NOT HELP
From a reader--
"I just wanted to let you know that I was tested for Lyme
by the Elisa and it was negative and then tested by the Western Blot with a Lyme
Literate physician and he said that I had chronic Lyme disease.Well,
I did years of Antibiotics and they didn't help me at all they just made me
worse. I went to 2 Infectious disease doctors and they said I didn't have Lyme
disease and said it can only be diagnosed by both the Elisa and Western Blot
test and not the Elisa alone. Basicly its like this, the CDC says you have to
have both tests positive to be diagnosed with Lyme disease. And ILADS says you
can been diagnosed by just the western blot or by having the symptoms.CDC
dosen't believe that there is such a thing as Chronic Lyme and ILADS believes
that you can have Chronic Lyme. Regular doctors go by what the CDC says. I am
not sure which is true either way because I didn't get any better from long
term antibiotics.All I got out of taking the antibiotics was side effects and
chronic yeast infections. I am guessing that you had the Elisa test done Dominie
and that because that was negative your doctor decided to not do the Western
Blot test! Also, I had my metal filling removed and that
didn't help at all either. That made me worse too because I ended up having to
get a root canal after the new filling was put in!"
6. A MANS POINT
OF VIEW - NATURAL THINGS & CANADIAN HEALTHCARE
From a male reader with FMS--
"The readers of your column who legitimately complain about the either lack
of success with pharmaceuticals or the total failure with one or more of them in
tandem. I could be very nasty here but I will simply say that anyone who thinks
they are going to do well on pharmaceuticals is not dealing with reality. If you
want to get worse take as many as you possibly can. I wish you well and your are
going to need all the best wishes you can get. I am 110% allergic to all
that BIG BROTHER PHARMACARE PUTS OUT. In fact I fully believe that some of my
FMS were preexisting prior to being deluged wih drugs. These conditions were
only worsened with them. Since I 'saw the light' and spend most of my life
researching the web for the good things that are out there that really do work
in the alternative healing modalities have I begun to restore my health slowly
but surely. Oh yes I now am totally responsible for funding all my health care
here in Beautiful Canada because of this. Even thourgh Canada claims to
be inclusive and cover all...when it comes to health care that is mostly true as
long as you will take what they dole out. Other than that you are totally on
your own. And their attitude on the subject is less than
complimentary. Case in point....PAIN....the worst you can
get. I have discovered that capsaicin and curcumin have done wonders. Three
weeks on "cure" mode have wiped out 99.99999% of all pain. Even being one
week plus without all pain meds because of an ordering boobooo I am still very
very comfortable to say the least. So I am looking forward to getting back
on my meds on a maintenance dose when they arrive in a few days. Natural
things go in and restore when you get the right thing. But one word of
caution here not all natural meds are created equal. You have to know what
works and not. There are very good natural things out there that do
work. There again you have to know which ones."
FROM DOM: He's right! Use as few
meds as possible. Your body isn't deficient in meds, but in natural
substances that help the body heal and repair itself. A list of things I
have found helpful (both meds and supplements) is at www.fms-help.com/what.htm. Without this things, I couldn't
function.
7. QUESTION ABOUT BACK
PAIN
"I am hoping you can help or pass this on to your readers
and see what they think. I have pain in my lower back for over 10
years. I have had MRI's showing 2 herniated disc. I have had steroid
injections to many to mention over the years. I found out in physical therapy
that my feet turned in and they had me get inserts and things started to change
for my back but I still woke up everyday with back pain. My husband had back
surgery over the winter after hurting his back. His surgeon really impressed me
and I asked him if he would mind giving me a second opinion and he said yes. He
poked around on me which hurt and also did and MRI and nerve test. Both turned
out fine. No herniated disc! Only arthritis in the back. He then stunned
me by saying I think your problem is fibromyalgia. I said no not again.
I told him how over the years I had been diagnosed with different arthritus but
never thought this would be the culprit of my lower back pain for 10 years. I
questioned him on how this could make my back go out where I could not walk on
my left leg and would be bed ridden except to be driven to the chiropractor for
a week to get me back to normal. He said yes it can cause all that. I was upset.
He said you have trigger points all over. I agree with that but I have been to a
great Doctor (last year) who said if I have it, that it is a very mild case
besides just having plain old arthitis. I want to know if anyone else
has back pain like this. My cousin has fibro and I know how much pain
she is in and some days she is bed ridden and she is just a few years older than
me. Thanks for listening. - Teresa aseretwright@yahoo.com"
8. FIBRO GUYS
WEBSITE
Got this info from a reader--
"My name is Rick Farwell, and I'm a
24-year-old male with fibromyalgia. I wanted to let you know about a new website
I have created for men of all ages affected by fibromyalgia, chronic fatigue, or
other chronic pain disorders. FibroGuys.com was
launched to give men affected by fibromyalgia a place to meet, share stories,
and make connections. As you know, fibromyalgia afflicts women at a much higher
rate than men. Consequently, men suffering from fibromyalgia can be isolated
even further, compounding what can already be a devastating, debilitating
disease. Fibro Guys' mission is to enable men with fibromyalgia to connect with
one another on a human level.
Fibro Guys is an
online social network that functions much like Facebook or MySpace. It is
absolutely free, and members are able to participate in discussions, maintain
personalized profiles, share pictures and videos, start their own blogs, and
chat with other Fibro Guys members. As the website was just launched last week,
I would appreciate if you could tell the members of your support group about
this new resource for connecting with other males with fibromyalgia.
Although the site is geared towards men, everyone is welcome to join
Fibro Guys! This includes women, teens, family and friends of people with
fibromyalgia, and anyone looking to learn more about the disease.
I hope
you can take a few minutes to visit the site! As Fibro
Guys.com was recently launched, feedback is
appreciated. Please feel free to send your comments, suggestions, and
constructive criticism to fibroguys@gmail.com.
- Rick Farwell"
9. FMS &
BLIND
"I was born with vision problems. I never thought of
it as a tragedy really. I had usable vision during my early years and was
just trying to do what was expected of me by teachers and parents. I
developed glaucoma while very young, and I lost my remaining vision within
several years. That was horrible for me because I did not adjust well to
not seeing anything. I got easily dizzy, confused, and even upset.
Several stressful surgeries did not help matters. I missed quite a bit of
school, 81 days in fifth grade alone. I was able to get my braille books
and study on my own and be promoted to sixth grade.
In high school, I noticed I had sleep problems at times
and got my days and nights mixed up in the summer. I didn't worry overmuch
about it. Just thought maybe I was a little bored or just lazy or lacking
in will power and discipline.
Sleep matters only worsened in college. I spent one
entire semester going to bed about 6:30 pm and getting up at about 4:30
am. I had no roommate and really had few friends. I was too
serious trying hard to maintain a 4.0 average and to take some advanced
placement tests to place out of several courses so as not to be delayed in
graduating. I kept that 4.0 throughout my first three semesters and had
over 60 hours going into my 4th semester, beginning my junior year. Not
that all that matters now. Getting good grades is such a hoax and a
myth. It's networking and being sociable and doing decently well unless
you are a scientist or doctor, perhaps.
I looked for work and found a typing job but had so much
trouble with sleep that I had an EEG trying to rule out narcolepsy or sleep
athnea. Both were ruled out, and I left my typing job. I later
taught for several years but found the work very stressful. I knew even
then something was not quite right with me. I thought if I could
find the right supplement, and I sure tried many, I would be ok.
Several years ago, I was diagnosed with FMS. I
remember feeling relieved that I actually had a real condition. Now, I
hate the very word FMS or anything with fibro in it. Though I did manage
to get a Masters Degree prior to any diagnosis, I have never been able to use
it. I have felt like this past decade was wasted. Last year, I had a
severe reaction to steroid medication, suffered a dangerous fall either down
several flights of stairs or off an upper story balcony. I suffered
fractures to my back and pelvis which are still painful. I hurt more now
than I ever did. I also have been waiting for recommendations concerning
FMS treatments, but as of this writing, 09-11-09, I have received nothing.
I feel so lost and overloaded by this FMS. I could just about handle being
blind. Granted it was no holiday, but this combination of FMS and
blindness is just ghastly.
It's tricky, too; because I'll have a good day and then
think I'm normal. I'll then have a bad day (where I collapse to sleep
about 8:30 pm, wake up about 12:30 am anxious and worried, then take something
and go to sleep for another four hours) and have to start canceling plans to
visit people or to shop for groceries (cooking is a trial) or even to visit the
chiropractor. It usually takes me planning ahead over a week--even two--to
get rides to places, so when I have to cancel, I can't just go the following
day. I have looked for a supportive church group and am continuing to do
so, also, a hobby, and things to do to keep my mind ok. I love to learn
new trivia type facts and such. I just feel if I disappeared, no one would
really notice. Food has gotten to the point where I always feel guilty:
guilty if I have a Coke, a hamburger, or I worry that I will never be able to
afford to eat like www.mercola.com
suggests you should.
Reading Dominie's newsletters over the past five years has
been an interesting experience--educational even. I am glad I'm not alone,
though it can seem I am sometimes. I wonder if other blind people exist
with this and how they cope. Seems we are all so differently impacted by
this syndrome! I wonder if they handle the anxiety, mental fog, and
tiredness better than do I? - David triviaguy@bellsouth.net "
10. LYME TESTS &
LABS
Reader 1--
"Your reader www.fms-help.com/110909.htm was
right that the Elisa test has many false negatives, and the Western Blot is
better, but most labs interpret the western blot test by the CDC definition
which is flawed and still misses a great percentage of lyme cases. If you
want more details about the politics of why the CDC defintion misses so
many cases I would reccomend reading the book Cure Unknown: Inside the Lyme Epidemic
by Pamela Weintraub, a scientific journalist. For
those on a budget, it should be available in most public libraries.
For a more accurate diagnosis I would
reccomend IGENEX labs. http://igenex.com/Website/ IGENEX gave me the results according to the CDC definition and
also the results according to IGENEX standards. Most lyme literate doctors
see IGENEX lab tests as superior to regular labs because, amoung other
reasons, they recognize more bands (a technical term related to the test
results). I tested negative according to CDC definition and positive
according to IGENEX standards for lyme. I tested positive for some
lyme co-infections which also supports the lyme diagnosis. To understand
the reasons for the difference, I strongly reccomend reading the book. You
will be amazed at all the money-making greedy reasons things happen in the
already existing, government-run portion of our health care system (i.e. CDC,
NIH, FDA, etc.)."
Reader 2--
"Absolutely you could have had the wrong test. Go on youtube - watch
"Under Our Skin" trailer also get book insight into lyme
disease. this will help everything you have make sense. I can't
believe it myself but I am giving it a whirl. Find someone in your area to do
the cd57 blood test."
11. SODIUM
CHLORITE
From a reader--
"Right now my doctor has me on
MMS, sodium chlorite, like your oxygen drops, to fight
my lyme and other infections. She does muscle testing to see what
protocols may be best for me, and MMS is the one that came up as a good one
for me right now to fight the lyme. Her muscle testing that initally that
revealed lyme turned out to be accurate when we followed up with the
blood work, so I am relying on the muscle testing in this regard as
well.
Many people use antibiotics to treat lyme, but in cases
where the person has had lyme more that a few weeks, antibiotics
reduce symptoms while on the antibiotics, but often don't cure lyme, even
when people stay on them for years. I wanted to avoid the antibiotics
because 4 weeks of IV antibiotics made my father's lyme much worse (he has now
lost the use of his feet now and barely walks with a cane), and it kicked up his
psoriasis again (which he had made go away through immune boosting
diet and supplements, etc.) and also led to shingles which now, 2
years later, still bothers him. His health has continued to go
downhill much faster since he was on them. Yet, his doctor told him
he was cured of lyme now because of 4 weeks of IV antibiotics. He
has tried so many different things through the years that he is not ready
to try my MMS or the oxygen drops.
If you do have undiagnosed lyme, the oxygen drops may
be helping to address it, along with whatever other infections may be wreaking
havoc in your system. One of the lyme co-infections behaves just like
malaria in the body, and sodium chlorite is very effective against
malaria."
FROM DOM: I've been
having great success with oxygen drops
& DMSO cream for the past 3 months. The drops (put in drinking water) alkalize the body's pH and
increase oxygenation. The DMSO cream is if you have the cold sore or
shingles virus dormant, and it prevents outbreaks by stopping the
herpes virus from being able to do it's dirty work. I apply the cream
at the first "tingle" and nothing develops. What a blessing!!!
I was suffering from almost continous cold sores due to a lousy immune system,
related to the sleep disorder, and two shingles attacks this year. I have
been feeling well for 3 months now. A cold sore TRIED to make an
appearance a couple weeks ago after a ton of stress preparing for the recital,
but I kept applying the DMSO cream and it never
materialized!!!!
12. CANCER CURED IN
CANADA, BUT BIG PHARMA SAYS NO WAY
From a reader--
13. DOM'S
CONFESSION
FROM DOM: Just a
few comments here about sugar. First, I hope none of my readers is
consuming too much of the white stuff. Sugar (in all its forms)
causes all kinds of health problems - yeast (candida), vaginal infections,
bladder infections, diabetes, depression, mood swings, increased fibro pain,
etc., etc. - maybe even cancer by making the body too acidic!
However, I just have to tell you this (if you promise not to spread it
around!) A few weeks ago, I was feeling "post-recital" (which means
that twice a year I become ultimately stressed-out preparing
25-30 students for a school of music piano & guitar recital and
feel extremely drained when it is over!) Well, in this depleted
state of mind and body, I was running errands all over town the next day and
felt just awful!! I suddenly got the crazy idea to go to a fast food
drive-thru and get a shake! Yes! I absolutely CRAVED one! Now,
before you jump to conclusions, please understand that I have a fast food
shake maybe once every few YEARS, if that. Well, after drinking a
Burger King vanilla cupcake flavored shake (probably the worst thing you can
possibly consume), my energy zoomed back within minutes (sugar rush?), and I not
only got through with all of my errands, but I also felt very well and energized
enough to get my webwork and housework done that night when I got
home. I had no crash, rebound, or negative effects. I am
NOT promoting unhealthy sugar consumption, but did wonder if low blood sugar is
part of my energy crisis at times? I was tested years ago and found to be
rather hypoglycemic, but have learned to control that through diet. I
have no desire to repeat my "sugar shake" experience, but it sure did help me
that one day - instant energy. It was probably a once in a lifetime
experience, but sure was FUN for a change!!! (Now please don't tell
anyone....I'm supposed to be writing a health newsletter
here!)
14. UBO'S IN THE BRAIN
& MULTIPLE CHEMICAL SENSITIVITY (MCS)
From a reader--
"I had a brain scan in 2000 and
[wonder about] the results as it relates to CFS. Have you ever heard of
UBO's [unidentified bright objects] in the brain in people
with CFS? I have them in my brain. I also have other interesting
brain information, and also what happened to my brain when I was poisoned by
Pesticides and came down with Multiple Chemical Sensitivity, 3
years after I came down with CFS and Fibromyalgia. It would be good for
your readers to know this also and be warned against pesticides and other toxic
chemicals. Once our immune system is compromised and we get a chronic
illness, we beome more subseptible to other health conditions and other
illnesses."
FROM DOM: I don't know
if I have UBO's or not - can't afford a brain scan. Anyone else have
UBO's? Write dombush@bellsouth.net. Our immune system is crucial to our
health. (Did you know that 80% of our immune system is located in our
intestines??! It's called the "gut brain.") I've been using an
immune shake daily since 2001, which works in the digestive tract. It
is #1 on my list of helps at www.fms-help.com/what.htm.
15. FIBRO & FATIGUE CENTERS
From a reader--
"According to the fibro and fatigue center I
used to go to (lot of money spent-nothing helped) they feel fibro has stemmed
from either one of two situations. Either you get if from sleep
imbalances which in turn cause thyroid imbalances and hormonal imbalances or you
get it from underlying viral infections such as the mycoplasma,
cytomegaloviruses, parvo, and c. pneumoniae which in turn cause thyroid
imbalance and hormonal imbalances as well. For me, I have all the nasty viruses
and such. Therefore, my immune system is in dire need of an overhaul."
II Corinthians
1: 4 - "Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at
www.fms-help.com for Fibromyalgia and Chronic Fatigue
Syndrome sufferers and their
families.
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.
