9. BOOSTING OR
BALANCING?
Reader
1--
"In response to your question whether we need to balance or
boost our immune system [Topic 15, www.fms-help.com/122209.htm],
I don't know that we know enough
to answer the question...I don't know if
the researchers can tell us, but my understanding is that our T-cells,
particularly our Th1 cell, which are pro-inflammatory, are overactive, trying
essentially to kill an un-killable virus, I speculate... or
perhaps it is effective in keeping the virus in check... flu-like
symptoms are generated to respond to virus; the downside is inflammation,
causing all types of other problems...But there's so much more to the story... I think it will take
quite a lot of digging to get to the answer on that one, and for a lay person,
it's REALLY hard to get at it because it's essentially beyond our
training...but it would be awesome to
ASK a scientist to answer the question!
Another big aspect is that we tend to have
gut dysbiosis... leaky gut... possibly from the reckless
medical practice of prescribing antibiotics like candy for
every little sniffle, which has disrupted the delicate balance of gut flora in
favor of CANDIDA, which has worn our intestinal lining thin, causing further
weakening of our immune system...I'm going to
at some point soon begin a regimen to strengthen my gut wall and rebuild my
digestive system... My understanding is that it should have a huge impact
on my immune system.
Here's some info from the VIPdx Labs site:
For instance, when PKR is decreased and Nitric
Oxide in turn, is down-regulated, Natural Killer Cell function and T-lymphocyte
activity is excessive. This can lead to increased Th-1 immune activation. When
PKR and Nitric Oxide are in excess, Natural Killer and T-lymphocyte cells
activity is decreased. For instance, studies have shown that a decrease in NO
results in decreased activity of NK and T-cell function against
cytomegalovirus (CMV)-infected cells. So even though the T-cells are activated, it appears to be
killing at least the cytomegalo virus... perhaps even the XMRV
virus... The
flu response is the proper response to a viral threat, but there are negative
consequences to having the response essentially turned on continually...
but we have a virus continually too... This is all
speculative... I'm definitely NOT a researcher."
Reader
2--
"I hope you'll let us know how that DNA supplement works
for you. My own personal experience of the ones I've tried was no help. I tried
an RNA supplement too as XMRV works through the RNA but also no luck with that
one. We are all different though and it also depends on the supplement so I am
curious to hear if the supplement helps you. Your
comment about boosting or balancing the immune system - that's the million
dollar question! An endocrinologist I saw a few years back told me I
have "hyperimmunity" which means my immune system
over reacts to things (I was given that as an offical "diagnosis"
though I've never really heard of that before). However I think also our immune
systems are depleted in many ways, partly because they
likely do over react and are always on over drive. Also also our
metabolisms don't work properly affecting immune function. I
think our immune systems need boosting and balancing. One great
thing about the immune powder
you take is it balances so is good for folks whose immune systems
are in over drive."
FROM DOM: I have been on the DNA supplement for 10 days. So
far so good. I was not sick during Christmas for the first time in many,
many years - but I think it may be due to the oxygen drops that I've been using
for the past 5 months.
10. AN
EYE-OPENER
From a reader--
This was a "real eye-opener" . . . .
There was a blind girl
who hated herself because she was blind.
She hated everyone,
except her loving boyfriend.
He was always there for her. She told her boyfriend,
'If I could
only see the world, I would marry you'
One day,
someone donated a
pair of eyes to her. When the bandages came
off, she was able to see
everything, including her boyfriend.
He asked
her, 'Now that you
can see the world, will you marry me?' The
girl looked at her boyfriend and
saw that he was blind. The
sight of his closed eyelids shocked her. She
hadn't expected
that. The thought of looking at them the rest of her life
led her to refuse to marry him.
Her boyfriend
left in tears and days later wrote a note to
her
saying: 'Take good care of your eyes, my dear, for before
they were
yours, they were mine!'
This is how
the human brain often works when our status
changes.
Only a very few remember what life was like before, and who
was
always by their side in the most painful situations.
Life is
a Gift.
Today
before you say an
unkind word - Think of someone
who can't speak.
Before
you complain about
the taste of your food - Think of someone
who has nothing to eat..
Before
you complain about
your husband or wife - Think of someone
who's crying out to GOD for a
companion.
Today
before you complain
about life - Think of someone
who went too early to heaven..
Before
whining about the
distance you drive Think of someone
who walks the same distance with their
feet.
And when
you are tired and
complain about your job - Think of the
unemployed, the disabled, and those
who wish they had your job.
And when
depressing
thoughts seem to get you down - Put a smile on
your face and think: you're
alive and still around.
11. COCONUT OIL,
LAURICIDIN & MONOLAURIN
From a reader--
"I read your reader's comments on coconut
oil www.fms-help.com/122209.htm
and I have some great info from my doc on that I wanted to share. My doctor was
invovled in the XMRV research/study - he teaches at Standford in the
virology (sp?) dept. and devotes much of his time to researching the immune
issues of CFS/FMS. He was very excited to share the XMRV study w/ me when I went
a few months ago and he said he believes for the first time in over 10 years of
treating only CFS/FMS that he can offer REAL HOPE to his patients! Let's pray
this is true. He told me there is nothing
yet avail to cure XMRV but that the BEST thing to help surpress it available
right now are two powerful antivirals called "Monolaurin" and "lauric
acid" found in coconut. Lauric acid is also found in human
breast milk, interestingly (doesn't this just show how amazing God is!)
My doc gave me a wonderful research paper and a website that I will give
you. There is a supplement that has just these two compounds extracted and
intensified from the coconut. I asked if I should get the supplement and he told
me that unfortunately he would not yet have me take it because the die
off would make me too sick and overwhelm my liver with toxins. He
cautioned me that even plain coconut could throw me into a terrible
relapse of symptoms. For years I've tried coconut off and on, and
always felt worse, yet kept trying different forms as I'd read so many
great things about it. Now I know why it makes me feel worse. Right now my doc
has me on a protocol of natural remedies to strengthen my immune system, heal my
digestive tract, and detox my liver plus therapeutic doses of certain vitamins
and minerals. I am on meds for severe candida and an antibiotic. He said in a
few months when my immune system and liver are stronger he will start me on the
monolaurin supplement (from coconut). So I personally am not yet on it but
some of your readers may be interested. He said he has lots of patients on it
who have had wonderful results, but they were not as sick as me when he started
them. Here is the link if you want to pass it on to your
readers...http://www.lauricidin.com/default.asp.
I would caution any who want to try it to go very very
slowly! Also FYI I have NOT yet been tested for XMRV and I asked about
that. I have tested positive for 4 other viruses that are often caused
by XMRV and my doc said he is almost certain I have XMRV. He can
test me but the cost is $400 and I found out my insurance will NOT
covered it. Whether or not I have XMRV I'd be on the same
protocol right now until there is a med to cure or supress XMRV so I'm
holding off on the test till I have the money."
FROM DOM: I tried
Monolaurin/Lauricidin several times and always had a worsening of symptoms, so I
discontinued it. But different things help different people....that's what
makes this illness so baffling to docs as well as
patients.
12. ITCHY FROM FIBERS
IN CLOTHING
From a reader--
"I was wondering if anyone else has this problem - I get
very itchy from fibers on clothing. This time of year is hard
with all the sweaters & heavy materials around. My eyes, nose are all itchy
& scratchy, my face too! I have to wash my hands alot to get fibers off of
them. I notice this every year, & it is so hard to walk into a department
store with clothes & rugs, anything with shedding fibers. I thought it was
just wool, but it seems to be everything that sheds fibers! Very annoying, but
just another symptom to add to the ongoing list."
13. MELATONIN &
SLEEP
From a reader--
"I used melatonin for many years and it was great, then
when I started to go into menopause it didn't work at
all. I have been battling sleep problems for about 30 yrs too.
I am now 52 and ambien does work but I usually only get about 4 hrs then I
wake up, if I am off from work the next day sometimes I will take a 1/2 pain
pill in the middle of the night when I wake up to use the restroom, and can help
me to fall asleep again."
14. BRAIN
FOG
From a reader--
"Is there some thing specific to clear up the bad brain
fog? I still have to try and work 40 hrs week, and am so painful and
exhausted that I feel like I am going to fall down and not be able get back
up."
FROM DOM: The only
things that have ever helped my brain fog are: oxygen drops in my
drinking water (to alkalize my pH and get more oxygen to my brain), and sniffing
Peace & Calming essential oil http://dom.younglivingworld.com (which
works on the limbic portion of the brain). Also, getting restorative sleep at night is really
important - a list of everything I have to use for sleep is at
www.fms-help.com/what.htm. Strangely, even after a night of poor sleep, I am
sometimes quite alert and don't suffer brain fog. The fog comes out of
nowhere.
15. ACID-ALKALINE
BALANCE
From a reader--
"For 2010 I want to balance my life with
nutritious food that will make my body alkaline. I went online and plugged in
alkaline-acidic foods. I really got an education! There are 381,000 hits for
this subject. For 2010 it is my sincere intention to pay attention to what I put
in my mouth and to ask the Lord to help me lighten up and laugh…even in the pain
and other debilitating symptoms. And to pray for those who suffer in mind and
body. I would like to hear what other positive intentions your readers
with FMS, M.E.,CFIDS have for 2010."
FROM DOM: I started
investigating acid/alkaline balance around 1984. When I finally got online
in 1996, I found much conflicting information and lists of acid and
alkaline foods. I've tried alkalization through diet
unsuccessfully. The easiest and most successful thing I've found are
putting oxygen
drops in my drinking water. I think most people with FMS/CFIDS/ME are
discouraged by all the things they tried that didn't help. But you're
right - alkalizing may be one of the best things we can do. If anyone has
other helpful ideas, write dombush@bellsouth.net.
16. EDUCATED, BUT
NOW DISABLED
From a reader [edited for anonymity]--
"I suffer from Fibro, CFS, RA, etc. I have had fibro
for at least 20 years but had been able to keep a fairly 'normal'
life. Three years ago I was offered a full scholarship to go back to
school at age 50. I made it through 2 years of school and managed to
graduate with a 3.85. I was working 40 hours a week and taking a full load
of college classes. I went to work [at my new job] but it was very
stressful. I began to experience severe fibro fog and couldn’t remember
things. I was getting progressively worse as far as my movement and pain
levels. Finally the pain became so severe that I had to go on leave to get
it under control. I went back to work for a couple months when my doctor
and I decided that I could no longer work. During this time my doctor has
added CFS/ME to my diagnosis as well as the Rheumatoid Arthritis."
FROM DOM: With fibro,
STRESS is our #1 enemy (see tip #1 at www.fms-help.com/tips.htm).
Also, see disability tips from other readers at www.fms-help.com/disability.htm. I am sure sorry this reader has not been able to use her
hard-worked-for education, but it is not unusual. Something like
this happened to a very dear friend of mine 20 years ago - she was a secretary,
divorced after just a few years of marriage, and decided to go to night school
to get a better job. She became a computer programmer.
Well, there were 60 hour work weeks and she never saw the sun - she said it
was dark when she went to work in the morning and dark when she got off at
night Within a year she had full blown fibromyalgia and has not been able
to work in her chosen field.
17. HOMEOPATHIC COLD
REMEDY
From a reader--
"I wanted to share with you something that I have
found that has been astounding for colds - it is UMCKA - it is a homeopathic
remedy that I use at the first sign of a cold and throughout until all symptoms
are gone. I usually have only one bad day and the rest of the time I can barely
tell I have a cold. Before it would last two weeks with all kinds of
symptoms."
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE