DOM'S
NEWSLETTER
February 1,
2010
A Christian-based newsletter for people
with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome
(CFIDS), or Myalgic Encephalomyelitis (M.E.) and their
families.
20 TOPICS below - don't miss the RED ones! Readers' comments in BLACK. My comments in TEAL.
1. READERS
WRITE
"Thank you so much for
your hard work in keeping us connnected and informed."
"I was just diagnosed w/
FMS, hypothyroid and other wonderful things that go along with it. I am trying
to learn everything I can about my 'new' life."
"Thank you, thank you,
thank you! I just discovered your site www.fms-help.com. You are a wealth of
much-needed information! Thank you for sharing your
research!"
"Love your newsletter
which I read constantly and re-read."
"God Bless for your
newsletter and web site...it gives hope to many of us."
"I am grateful for
you and know it is the Lord that gave you this problem and inspired you
to find out more and write about it to help people like us who have no clue
about this problem, and the net is the only source.
"Thanks for another
wonderful newsletter!"
2.
STABILIZED LIQUID OXYGEN & FATIGUE
From a
reader--
"After researching
different brands of oxygen drops, I chose to try this brand because of
price:
http://www.liquid-stabilized-oxygen.com/ I take 5ml and hold it under my
tongue for 5 mins 2 - 3 times a day and am no longer tired. I have had FM
for 39+ years and most days I had a hard time putting one foot in front of the
other. My fantasies were always about napping! The tiredness was all
consuming. My question is, is this the same type of liquid oxygen that you
write about but in different form?"
FROM DOM: I researched this SLO and the price looks
great. The only negative for me would be the taste. The oxygen drops
I have been using since August 2009 are more expensive, but have NO TASTE at all
http://neveranoutbreak.com/oxygen.php?
partner=FM5H1PDB. I'm
glad this reader has found relief from fatigue - me too!!! I have felt
better since August 2009 than I have in many years. My husband always said
it was like I wasn't getting enough oxygen to my brain. Either of these
SLO products sound like a blessing - people suffering from CFS might want
to try this, but shop carefully - there are many SLO brands online and I
doubt that all work the same.
Answer from
reader--
"Let me answer first about the taste of the SLO because I am happy
to say that there is NO taste as far as I am concerned. Like I said, I
choose the method of holding it under my tongue for 5 mins instead of the other
choice to just swallow it before or after meals.......because you have to use it
an hour before or two hours after meals or some such thing. But because
I dislike the restrictions, I do it this way. It says you get the
full effect sublingually in 5 mins and don't have to wait to eat. I just
busy myself with something to do. Trust me, there is no taste. As
far as not sleeping, my Dr says that is the #1 culprit in making all other
symptoms worse. When we sleep, our bodies build, heal, grow, rest, etc.
etc. I have NEVER slept an entire night and have been the route of
sleep studies, psychiatrists, Drs. etc. I have vivid nightmares, and wake
up sobbing most nights. Plus, there's the constant pain that makes you
toss and turn continuously, and other health-related problems as well.
That's why the SLO is so important to me, no more tiredness even though I don't
sleep."
3.
XYREM & PAIN
From a
reader--
"I find no relief in any
kind of pain remedies and have tried many, many different things the latest
being Xyrem (sodium oxybate) at the highest dosage. It had pretty good
results, but was too expensive. My insurance company only covered it
for about 3 months worth. The side effects and restrictive bedtimes were
not worth it. I cannot remember a day in the last 40 yrs that I have not
been in debilitating pain."
FROM DOM: Search
past newsletters www.fms-help.com/newsletters.htm about Xyrem (powerful sleep drug).
Not sure if it is effective for pain, unless better sleep leads to less
pain. I have been pain free for many years now. A list of PAIN
SUGGESTIONS is at www.fms-help.com/what.htm - scroll down to PAIN section.
4.
MAJOR FAMILY PROBLEMS CAUSED BY FIBRO
FROM
DOM: My heart breaks for readers having severe family issues caused
by misunderstanding of FMS/CFIDS/ME. Some are being called lazy, shouted
at, threatened with divorce, etc. I wanted to share some of these
stories here, but I respect privacy issues. Frankly, our nervous systems
can't take this kind of stress and abuse for very long without things breaking
down even more. We are highly sensitive because our mysterious illness
amplifies stimuli to our brains and nervous systems. Fortunately, many
readers have very supportive and loving families - what a blessing!
But sadly, there are others whose parents / children / spouses do not wish
to be educated about this illness and are keeping up a barrage of emotional
abuse toward the ill person. This badgering makes the physical suffering
even harder to bear! Should you be caught in such a tragic domestic
situation, say to yourself, "I don't receive that" or "I dont' agree with
that." when you are mocked. You can say it under your breath or say
it out loud if it won't provoke the situation more. There are young people
on the mailing list whose potential in life has been drastically threatened -
their schooling (high school / college), plans for marriage and careers thrown
into the realm of impossibility in many severe cases. I pray for more
complete awareness of FMS/CFIDS/ME in our lifetime. Right now, the
big news is the XMRV retrovirus found in CFS
patients. If we can finally PROVE we are SICK and not
MALINGERERS, things will be much better for us socially and
emotionally. On my homepage www.fms-help.com in the YELLOW BOX, I have many
helpful and supportive articles for those suffering with FMS/CFIDS/ME, as well
as articles on relationships and fibro. You can
stay up to date on the new XMRV discoveries at www.fms-help.com/XMRV.htm - I am trying to keep this page up to date (old info is
first - new info follows - keep scrolling down this page for the
latest).
5.
DON'T DONATE BLOOD
FROM DOM: I
just heard from a reader with FMS/CFIDS who has a rare blood type
and often donates blood to the Red Cross - in fact, she is solicited for
this. As good-hearted as she is, I don't think she should donate any more
blood. The Red Cross has not yet begun screening for XMRV and the new
emerging research www.fms-help.com/XMRV.htm is going to change a
lot of things for us - especially if FMS/CFIDS is found to be infectious,
as Judy Mikovits (virologist) says it is. On the plus side, we will
be BELIEVED to be sick. On the negative side, we may become ostracized like AIDS
patients. That was interesting what she said about Magic Johnson being
controlled so well for HIV that he will never have AIDS. Wouldn't it be
great if we could have meds that would help us live a normal life?! Like
you, I too feel like I have been robbed of decades of life. My consolation
is that God had a plan for my life, which included allowing me to get this, and
that good will come from it. I think the Red Cross will need to start
screening for XMRV.
6.
HHV-6 & CFIDS
From a
reader--
7.
COLD SORES
From a
reader--
"My [teenage] daughter
has terrible outbreaks with cold sores that has turned into a system wide thing
called Erythema Multiforme. She has been on 1500 mg of Valtrex (max dose)
and 40mg daily of Prednisone. When they stopped the Prednisone she began
breaking out again - we are trying to keep her off the Prednisone. Cold
sores is in the HHV virus."
FROM
DOM: I finally found 99.9% relief from horrible cold sore
outbreaks. Since August 2009 I have been using the protocol at
http://neveranoutbreak.com/store/packagespecial.php?
partner=FM5H1PDB. For me, even massive
doses of Acyclovir wasn't keeping the cold sore virus in check
and my doc (internal medicine) told me that the drug was toxic to my
kidneys. The protocol I use involves drinking water with oxygen
drops in it 3 times a day and applying DMSO cream (smells very pleasant - rose
scented) to any areas of former outbreaks and also the back of neck / spine
where the virus hibernates. It's important to get the book that goes with
the oxygen drops and DMSO cream to understand how this all
works. This protocol has been a lifesaver for me!!! I also
tried Valtrex, no luck there.
8.
FOOD GRADE HYDROGEN PEROXIDE
From a
reader--
FROM DOM: I don't know how effective this is, but some
may want to take a look at this. I'm doing so well with my oxygen routine
that I don't want to switch horses.
9. SEDENTARY HOURS CAN KILL
YOU
Jan 21, 2010 -- Sedentary hours that accompany
TV watching can kill you
Watching TV or sitting in front of a computer for
extended periods can kill you, according to the results of a new study in
Circulation: Journal of the American Heart Association. -
The six-year study by Australian
researchers found that watching four or more hours of TV per day is associated
with an 11 percent increased risk of death in general, and an 18 percent greater
risk of death from cardiovascular disease in
particular.
FROM DOM: However, read the
rebut posted by
10. CLARK HOWARD
FROM DOM: Our plumber told me about Clark
Howard's website - a guy who knows how to save you money. I looked up his
site and found the health section http://clarkhoward.com/liveweb/shownotes/category/11/65/ - interesting. My husband
Donnie says he has a radio show too.
11. CHILDBIRTH &
FMS
From a reader--
"I was told after the birth of
my firstborn 39 yrs ago, that the trauma of the birth was what triggered my
symptoms. Six weeks later I was so crippled with what they diagnosed as
Rheumatoid Arthritis. It was debilitating.......now it's just
'normal'. They didn't know what FM was then. I've learned since then
that it has to do with the immune system. The Dr said that "it" lies
dormant in those that are prone to getting it and that something traumatic can
trigger it. I am turning 60."
FROM DOM: I have
heard from many readers whose FMS began with childbirth. It seems that
this doctor is right - it does seem to take some kind of trauma to the body or
emotions to get FMS going. My readers (since 1996) have pointed to
things like death of a loved one, divorce, childbirth, surgery, accidents (car,
falls, etc.), neck injuries, abusive marriages, abusive working environments,
etc. as the triggers that brought on their FMS - some people had multiple
stresses before their immune system broke down letting this virus breakl through
the defences. My own fibromyalgia story is at www.fms-help.com/fibro.htm.
12.
MTHFR GENETIC DEFECT & HOMOCYSTEINE LEVELS
From a reader--
"I have been suffering from
lyme disease/fibroyalgia symptoms for over 30 years. I saw an
allergist/immunologist a few months back and after doing routine blood work said
'I know what's wrong with you, let me do one more test and we will talk.'
Sure enough at next visit I was positive for a double MTHFR genetic
mutation and was told to have all of my family members checked because chances
are they have it also, which turned out to be correct. I don't know if you or
members are familiar with this deficiency but there is a direct connection with
fibromyalgia/chronic fatigue. It's funny how some doctors make light of
this deficiency and others stress how serious it can be. There is a double and
single mutation. A very helpful website that I found is www.NWHealthcare.net -
click on medical conditions on left hand column, then click on MTHFR illness.
Watch Dr. Neil Rawlins lecture, it is very, very interesting."
What is MTHFR?
MTHFR -
(Methylene-tetra-hydro-folate-reductase) is an enzyme found in the cells of our
body. It is needed to metabolize (break down) homocysteine, an amino acid found
in the proteins you eat. Elevated homocysteine levels have been associated with
fetal neural tube defects (i.e., spinal Bifida) and miscarriage. An elevated
homocysteine level can also indicate a increased risk factor for blood clots,
arteriosclerosis (hardening of arteries) and strokes in both men and women. The
metabolism of homocysteine depends on several enzymes, one of which is MTHFR,
along with B vitamins and folic acid. In other words, B vitamins, folic acid and
MTHFR are necessary to keep homocysteine levels within normal
limits.
Sometimes your MTHFR has a genetic defect. These defects are
fairly common and its estimated by some studies that up to 60% of the population
have one MTHFR mutation or another.
There are two common genetic MTHFR
mutations. If you have one mutation only, you are heterozygous. It is reported
that nearly half the population is MTHFR heterozygous. - it is nothing abnormal.
If you have two copies of the same mutation, you are homozygous. Homozygotes can
have elevated homocysteine levels in maternal blood and amniotic fluid. If you
have one copy each of the two different mutations, you are compound
heterozygotes. Compound heterozygotes have the same treatment and risk level as
homozygotes. If you have neither mutation, you are negative and don't need to
worry about MTHFR.
There is NO CURE for MTHFR mutation. If you have the
mutation, that's the way your body is made. You can, however, lessen any risk
factors you have by taking B vitamins, Folic acid and baby aspirin in doses
prescribed by your doctor. By taking these agents, you can lower your
homocysteine levels and therefor your risk for the conditions
above.
MTHFR mutations are hereditary. Families with significant early
cardiovascular disease or recurrent pregnancy loss might benefit from clinical
investigation.
++++ I typed this up from the form my doctor gave me, when
he told me I have MTHFR++++
13.
READERS' PRAYER CORNER
Reader with RA and FMS has been denied
disability after an accident at work. Please pray for things to be worked
out. (Can't mention her name due to the job and legal
situation.)
14. TIPS FOR GETTING DISABILITY FOR FMS
15.
LYME/FIBRO CONNECTION
Reader 1--
"To the patient
[www.fms-help.com/012310.htm] who wonders about the Lyme/fibro connection, I
went to see a "fibro specialist" three years ago, and he told me I had
Lyme. I even tested positive in a blood test. This doctor told me I
was the 5th person he had diagnosed that month. He then prescribed several
months of heavy duty antibiotics. After seeing other doctors, and doing
quite a bit of research on my own, I called our state epidemiologist, who said
there has NOT BEEN ONE confirmed case of Lyme in my state (people who acquired
it in my state, not people who contracted it in another state). She said
lots of doctors are diagnosing it, and that it is a "popular" diagnosis. I
wonder why the doctor I saw did not report his numerous cases of Lyme to the
state, as he is required to do. I don't know what is going on with the
supposed "Lyme epidemic", but for me it was wasted time taking antibiotics I
didn't need. It was finally confirmed that NO, I definitely didn't have
it, and it was only then I could get back to trying to treat the fibro.
That's my story anyway."
Reader 2--
"In response to a
piece in your last newsletter www.fms-help.com/012310.htm
regarding Lyme or Fibro... I was diagnosed with Lyme in l990....you see I was a
Veterinary Tech for over 20 years...we heard of Lyme in dogs before it was heard
of much in people. I know I was bitten by ticks many times living in the
Pine Lands of New Jersey, and never gave a thought to it...but the one
time was different...I got the target rash, and again, didn't heed the
warning...so I just continued with my life...until I started feeling very tired
and had flu like symptoms...then the muscles and bones started hurting like
crazy...went to several doctors, all of which said that I probably didn't have
Lymes...until I demanded the test...it took almost two years to get
diagnosed...I was in third stage and had the disease for several years before
being diagnosed...it took 3 more years of IV antibiotics and much suffering
before going into remission...six months later was diagnosed with Fibro...and
have been sick ever since...I think the Lyme brought this on, or maybe I have
chronic Lyme, I don't know...I have been on several courses of oral antibiotics
over the years, and they have not made a bit of difference in how I feel
regarding the pain, so I think it is Fibro...It is a very difficult thing to
say, and the doctors sure don't help...they seem to shrug off what is told to
them...as for now, have a decent doc and trying to control the symptoms, but
with each year I seem to get worse...I have been tested for everything that
mimics Fibro and all is negative...Thank God I have a very understanding and
compassionate partner. I pray for all of us with Fibro...it sure can ruin
lives."
FROM
DOM: About lyme/fibro, it is sure confusing. I tested negative for
lyme 2 years ago, but now I'm told that my the doc should have sent the sample
to a different lab....sigh. BTW, taking powerful antibiotics long term is
how I got CFIDS in 1987 www.fms-help.com/fatigue.htm
16. WEB MD
FIBRO SUPPORT GROUP
"Why does fibro relief
never last?"
17. MSG
CAUSES NEUROLOGICAL DAMAGE
From a
reader--
"MSG causes neurological
damage. I have the same problems you have. MSG is listed as "natural flavors"
& "spices" & 25 other names! See www.truthinlabeling.org."
FROM
DOM: MSG has been a subject in many past newsletters www.fms-help.com/newsletters.htm. I wonder if there are only some people who are
sensitive to it, though? The reason I say this is when I was growing
up, my parents used monosodium glutamate (MSG) in almost all
dishes. My family (except for me) were extremely healthy - my father was
incredibly vigorous (did roof repairs, climbed trees, etc.) until a few months
before his death at nearly 92. My mother, 88, runs circles
around me and always has. My brother was a rock climber, cyclist,
and at 56 can still run 10 miles on the beach when he visits us here
in Florida. Well.....then there's me.....maybe I'm adopted
(ha). Seriously....check out the hidden names for MSG: http://www.msgmyth.com/hidename.htm - and this article called "The Slow Poisoning of
America" http://www.rense.com/general67/msg.htm. (In my family's case, it must be reeeally
slow, or they are not sensitive to it.)
18.
HORMONES & INSOMNIA
From a
reader--
"I am so
sorry for all of the suffering that you went through due to insomnia.
I have had severe
insomnia for only 2 months now and i have never felt so
profoundly fatigued and
exhausted in my life! I think unless you have experienced it
is hard to explain to
people how it feels.I can't imagine living like this for 30 years
as you
have.
My insomnia started when
i had a hormone implant inplanted in my hip. I was given
progesterone to balance
the estrogen implant. My compounding pharmacist said
that my body is turning
the progesterone into metabolites that are causing
my
insomnia.
I hopefully will recover
my ability to sleep after i am off all meds. Have you ever
consulted
with a compounding
pharmacist about your problems ? Your body could be turning
your
female hormones into
harmful metabolites. Your own natural hormones could be
causing
your problems. Most
people would not think of going to a compounding pharmacist.
They will test your
hormones, cortisol levels and maybe you have an imbalance that
is causing your
insomnia.They know more about hormones than most MD's.
You are likely to have
one close by to consult with.
I did not sleep
last night so my brain is haywire now. I enjoyed your articles and sleep
advice!"
FROM DOM: My
insomnia story is at www.fms-help.com/insomnia.htm. Everything I've tried for sleep
is at www.fms-help.com/sleep.htm. What I use now is at
www.fms-help.com/what.htm. I would love to
investigate the hormone aspect, but finances do not permit. I am grateful
that my doc finally found the concoction that helps me sleep. However, I
am not a morning person - I schedule my work and music teaching for afternoons
and evenings.
19. AMPLIGEN FOR
CFS
From a reader--
"FDA Gets Data on Ampligen
for Chronic Fatigue Syndrome
When the FDA announced in December that it was not approving
Ampligen, it made recommendations to the company about what was needed to
improve the drug's chances of approval down the road. Hemispherx says the data
it has just submitted should sufficiently address some of the FDA's
concerns.
Ampligen is currently not approved for any use in the US, but some
doctors are prescribing it for their chronic fatigue syndrome patients through a
special program.
Ampligen
Ampligen (polyu I: poly C12U) in an experimental
anti-viral, immune-system modulating drug that's been in the works for more than
30 years. It's been studied as a possible treatment
for multiple conditions, including chronic fatigue syndrome (CFS or ME/CFS), HIV/AIDS,
certain types of cancer, and both avian flu and swine flu (H1N1).
In December 2009, the FDA rejected Ampligen as an ME/CFS treatment.
It would have been the first approved treatment for this condition. The
manufacturer has said it will move forward with further testing as recommended
by the FDA and continue working to get Ampligen on the market.
What Ampligen Does:
Ampligen is believed to work by jump-starting your body's natural
anti-viral pathway and regulating levels of RNase L (a substance in your cells that attacks viruses),
which can be high in people with ME/CFS. It's also
been shown to inhibit tumor-cell growth.
Ampligen for Chronic Fatigue
Syndrome:
In clinical trials, Ampligen has been shown to improve cognition, exercise tolerance,
neuropsychological health and overall function in people with ME/CFS; decrease
activity of HHV-6 (a virus believed to be linked to ME/CFS); and decrease RNase
L activity.
According to Ampligen's manufacturer, Hemispherx Biopharma Inc., more
than 40,000 doses of Ampligen were given to about 500 patients in clinical
trials at more than 20 U.S. Clinics. One of those clinics, the Hunter-Hopkins
Center, says 80% of its patients improved on Ampligen, and 50% improved
significantly.
Ampligen Dosage:
Ampligen is administered intravenously (I.V.). In trials and under
conditional permits by the FDA, patients typically have received 400mg of the
drug twice a week. Hunter-Hopkins recommends at least 12 months of therapy, and
18 months for the severely ill.
Ampligen Side Effects:
Possible side effects of Ampligen include:
- Mild flushing
- Tightness of the chest
- Rapid heartbeat
- Anxiety
- Shortness of breath
- Feeling hot
- Sweating
- Nausea
- Liver enzyme level changes
- Diarrhea
- Itching
- Low blood pressure
- Rash
- Arrhythmias
- Low white blood cell count
- Dizziness
- Confusion
Some patients have
flu-like symptoms for a few hours after receiving a dose of the drug, and the
company says these effects typically went away after several months of
treatment. http://chronicfatigue.about.com/od/treatingfm
scfs/p/ampligen.htm"
FROM DOM: Has anyone tried Ampligen in the
trial studies? How did it work for you? Please write
dombush@bellsouth.net.
20. PRAYER FOR HAITI
Got this from a friend--
PRAYER FOR HAITI
Lord, I just want to THANK YOU, because this morning I when I
awoke:
I knew where my children were.
My home was still standing
I am not crying because my spouse, my child, my brother or
sister are buried underneath a pile of concrete
I was able to drink a glass of water
I was able to turn on the light
I was able to take a shower
I was not planning a funeral
I thank you because I still have life and a voice to
cry out to you on behalf of the people of Haiti.
Lord you make the impossible, possible, You turn
darkness in to light.
I pray that you give Haitian mothers strength,
that you give them your peace that surpasses all understanding.
Please open the streets so that your help can may reach
those in need.
Provide doctors, nurses, food, water, and all that is
needed.
Give your peace and hope for all who have lost
family members, and nourish their faith and give them courage to go on!
Protect the children and shield them from disease.
Protect those who are attending to the Haitian people, help
them make accurate assessments of the people's needs, and ensure that their
actions are correct and timely.
I pray all this in the name of
Jesus.
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.
Alkalizing
Drops
Antioxidants
Cold Sore
Treatment
Colloidal
Silver
DMSO
DNA Protector
& Immune Booster
Essential Oils
Immune Balancing
Shake
Nutritional
Powder
Omega
3's
Oxygen
Drops
Protein
Powder
Shingles
Treatment
Stress
Tablets
Supplements
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.
