DOM'S
NEWSLETTER
December 22,
2009
A
Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue
& Immune Dysfunction Syndrome (CFIDS), or
Myalgic Encephalomyelitis (M.E.) and their families.
15 TOPICS - don't miss the
RED ONES! Readers comments in BLACK. My comments in TEAL.
1. READERS
WRITE
"Thanks for all you do in being a clearing
house for fibro information."
"I have enjoyed reading your newsletter
about insomnia, etc. Now, I feel I'm not alone and possibly have hope of
somehow managing this huge problem called insomnia www.fms-help.com/insomnia.htm. Thank you for such a wonderful service and
compassion."
2. QUESTION ABOUT
DR. KLIMAS' VIDEOS
From a reader--
"Thanks for sharing the videos from Dr. Klimas www.fms-help.com/121609.htm (Topic 1)
about XMRV. I watched a couple of them with great
interest. In segment 11 on "Taking care of yourself", she
mentions several supplements and some other drugs. I had a hard time
understanding the names of the drugs she talked about, one of them sounded like
Inosine? If you or anyone is able to share those, I would surely appreciate
it."
FROM DOM: My speakers are
malfunctioning and Donnie's computer crashed a few weeks ago. If anyone
can get the list of drugs/supplements that were mentioned, please write
dombush@bellsouth.net and I'll put them in the next
newsletter.
3. KANGEN
ALKALIZED WATER
From a reader--
"I read the article on Baking Soda www.fms-help.com/121609.htm and have been
drinking Kangen alkalinized water for some time now - have you
heard of this from Japan - we had been use a water revitalizer and and had to do
a three stage process in first filtering our water, then removing all particles,
then running it through the revializer to restructure the water. Yes you got it,
I too have been trying everything for my fibro. We tried the drops but that was
a hassle & we tried the alkaline diet also so when the Kangen unit came
along that really simplified things - If you haven't heard of it I am sending a
link - I was very impressed with the many things that can be done with the
either alkaline water or even the acidic water like the man that almost lost his
foot in Japan because he cut it and had diabetes - he was told he would have to
have it cut off - luckily he got a second opinion and went to a hospital that
had this kind of water and they had him drink the alkaline water and soaked in
the acid water and saved his foot - that was amazing!"
4.
5-HTP
From a reader--
"I have done so much research on
insomnia, looking for something to help me. I found Dr. Roger
Murphree's site and read about 5-HTP. I have been taking 1 100 mg capsule the
first time I wake up in the night and I go back to sleep and sleep the rest of
the night, getting 7 1/2 to 8 hours a night. I used to get 4 hours and wake up
at least once an hour. Now i wake up once, take a capsule and go back to
sleep. It took about 3 months to get regulated but it's been a real
life-saver for me."
FROM DOM: I've tried
5-HTP on 3 separate occasions, but it did not help my insomnia - actually I felt
kind of weird in my head. I'm glad it helps some people with
insomnia. A sleep disorder can wreck our health and lead to fibromyalgia
and other problems. For 3 years I used a melatonin complex formula, but
that suddenly stopped working after 3 years. I finally had to resort to
the immune powder and
sleep meds.
5. HERXHEIMER
REACTION
From a reader--
"I took coconut oil for 2 weeks --i read it is very
antiviral-the extra virgin kind is 8 dollars. i dipped my chicken or chip or
bread in it, put it in some recipes.....it made my flu symptoms much worse--the
herxheimer reaction--so i stopped it and then the next week or so my flu
symptoms went away-Praise God--i am still fatigued and weak but better, olive
leaf also gives the herxheimer reaction. i am going to try some new vitamins and
stuff in january - when i have a little money to pay caregiver to be with
me--cause most new things make me worse."
FROM DOM: From experience, I
have learned to use JUST A TINY BIT of anything new - whether a supplement or
drug (use a pill splitter gadget - cheap from Walmart) to see how your body
reacts.
6. CREATINE
Reader 1--
"In my note [about creatine www.fms-help.com/121609.htm],
I forgot to mention a real big change for me from using creatin --
my hands have straightened out. They had been turning into claws,
neither straight nor fully closed, always partly curled up. But after a
couple of days of creatin, my fingers straightened out completely. In
another week, I could make a full fist, and since then they have
been normal hands again. It didn't help the clumsiness tho. LOL. Also, it
hasn't helped with my ongoing thirst problem, the reason I took it in the
first place. But I'm so very grateful for the things it has done.
|
Reader 2--
"For the comment on creatinine consumption
www.fms-help.com/121609.htm for any chronic pain syndromes/arthritis/Lupus/CFS/ME/FMS /all auto
immune diseases, etc: Please check with your Doctor first before consuming
it. It is not approved by the FDA. Please have serum renal (kidney)
studies done every 2-3 months as high creatinine levels are dangerous to the
body. The level should run between 0.60-1.40mg/dL.
Additionally, we need to consult our Primary
care physicians and specialists about ALL over the counter supplements that we
take (or preferably before we take them) that are not FCA approved. If you don’t
know if they are please look online or ask your Pharmacists if there are any
reactions or interactions to your body organs or your
medications."
Reply from Reader 1 again--
"Creatin/creatine are the same thing,
different spelling. But creatinin/creatinine is NOT the same
thing. I believe it's a waste product in the body, and the nurse is correct --
high levels of creatinin/creatinine are a bad thing. But I
don't think anyone would buy and take creatinin/creatinine. There's a lot
about both of these things on the web, and anyone considering using it can find
a lot of material to read.
It is confusing but I'm taking what hundreds of body builders take,
and I only take one scoop in a day whereas they may take 3-4. The reason I
wasn't afraid to try it is because there aren't any serious side
effects. If you are a heavy user, they recommend that you stop it for a
while then go back on but I don't think a fibromite would be taking such large
amounts.
I also have a comment about the nurse saying we should check with our drs.
about over-the-counter products. It is my experience that drs. (and nurses)
don't know about those things, and even when they do, they will generally try to
get you on to some expensive prescription anyway. I have been overdosed every
single time I have had prescription medicine, because my body can't handle it.
My fibro drs. gave me elavil, vicodin, lortab, percocet, etc, even tho at low
doses, and they all knocked me out or stopped working quickly, whereas taking
one 500 mg. OTC acetaminophen pill a day was very helpful for my pain. (I don't
need that anymore since taking creatin tho.)
I realize all of this is a matter of opinion and personal experience but we
who suffer normally read a lot, research every suggestion, experiment with
everything, trying to get some relief. When someone can show me that there is a
proven cure (or a proven cause!) for our problems, then I will listen to
them. Creatin works for me but maybe not for the next
person."
7. OXYGENATING &
ALKALIZING
From a reader--
"I, too, have been doing oxygen and
alkalizing - albeit the old fashion way, with food grade H2O2 and
baking soda, but it works none the less. I tried going off the H2O2, for a
while, but noticed almost immediately, that I felt worse. Now am back to 10
drops twice daily, and feel good on that amount. I'm also using powdered
(crystalline) Vitamin C (5 grams daily), to help with detox,
for my MCS. I think that is also helping. Am mixing my baking soda
into the water, with the powdered Vitamin C -this bubbles and fizzes, and tastes just like AlkaSeltzer. I test my urine, and am maintaining a pH of 7.0 by doing this. I am totally convinced that by using H2O2 and alkalizing that we are fighting several conditions at the same time: cancer, infection (viral
(flu [H1N1, Seasonal Flu, Epstein Barr, XMRV, etc.], fungal (Candida),
and bacterial [UTI, pneumonia and bronchitis]). We are also allowing our
bodies to have an optimal environment to heal, by oxygenating our cells, and
keeping our tissues at optimal pH."
FROM DOM: I continue to
do great with the oxygen drops -
I've been using the drops in my drinking water since August. I have not
had any viral illness or cold sores since then, which is pretty amazing, since I
was having cold sores one after the other for years. I did have trouble
with an eye infection, catching something from the piano at church, but that
cleared up with antibiotic eye drops. I have not very few days of feeling
totally drained and fogged out since beginning the drops. The oxygenating
and alkalizing effect of the drops has been most helpful to me. In fact,
besides the immune powder
(which I've taken since 2001), this is the main thing I need to keep going!
8. CIRCADIAN
RHYTHM
From a reader--
"Lately, my circadian rhythm won't let me sleep at night.
I tried my darnedest to turn it around, and finally gave up. It wore me
out, trying to rearrange my sleep times. ;-{ Maybe after the new
year, I will try again. I really do miss being up, when the sun is
up."
9. XMRV & CFS/ME -
A STUNNING FIND
10. XMRV - CFS/ME
REPLICATION STUDY IN SWEDEN
From a reader--
"The discovery of a retroviral link to ME/CFS, reported in the major journal
Science in October 2009 (Science 2009; 326: 530–1), has the potential to advance the diagnosis and treatment of the
illness greatly (see our overview essay XMRV and ME/CFS — A stunning find). The
major finding was that DNA from
the XMRV virus
could be detected in the peripheral blood mononuclear cells of over two-thirds
of ME/CFS patients’ samples from the blood
bank in the Whittemore Peterson Institute tissue
repository, but in less than 4% of healthy control
samples. Also, the researchers reported that XMRV proteins
were being expressed in blood cells from ME/CFS patients at very high levels
compared with controls, and that patient-derived XMRV was
infectious and transmissible.
These findings have caught the attention
of the scientific world, but the next steps are equally important. Chief among
these is for independent laboratories across the world to attempt the
replication of the WPI
findings among their own local populations of ME/CFS patients — it is sometimes said
that replication studies are where the rubber meets the road in science! Since
the WPI researchers
used samples selected from several regions in the US where “outbreaks of
CFS” had been documented
(using patients diagnosed on CDC-1994
criteria and Canadian Clinical criteria 2003), blood
samples from patients in other areas or countries might throw up very different
results. Will ME/CFS samples from other regions of the
US show similar high rates of positivity? And what about European
samples?
This replication study is one attempt to
answer this question — to establish whether XMRV nucleic
acid can be found in peripheral blood mononuclear cells, plasma and serum of
Swedish patients and controls."
11. HEALTH CARE
BILL
From a reader--
"Here is information on how to help defeat this ObamaCare
Health Bill. If you choose to act, by typing in your zip code you can find
out who the 2 Senator's are for your area and how to reach their office.
This Bill will be like death to seniors if it passes. Much will be taken
away from us and many will die from the lowered quality of
care. I feel their mindset in government toward seniors is that
basically we have reached the age of uselessness and we are seen as takers of
the system instead of givers, and to government that makes us a drain on
the system. http://www.capwiz.com/afanet/callalert/index.tt?alertid=14462366."
FROM DOM: A CNN poll
shows that 61% of Americans do NOT want this health care bill to
become law, for a number of reasons - just a few: care will be rationed, quality
will decline, hospitals will be driven out of business, small business owners
will not be able to afford coverage for employees, married couples will pay much
more than if they were single and living together, etc.
12. XMRV IS NOT
HIV
"Not HIV!
- XMRV is about as different from HIV as a retrovirus can be in several
ways. XMRV doesn’t appear to replicate rapidly which means it has a low
mutation rate and suggest it might be relatively easy to create a
vaccine for but also gives researchers less of a window on the treatment end to
knock it down.
“The potential pathogenecity of the this virus should not be
underestimated” Dr. John Coffin
Treatments - Its unclear whether HIV
drugs are going to work. (The WPI is reportedly testing them and antivirals
including Ampligen in the lab). Interestingly AZT, which had been
sitting on the shelf for 20 years before the HIV epidemic hit, was
developed against a gamma retrovirus (like XMRV). Even more interesting the drug
developers apparently have a good number of anti- retroviral drugs
sitting on the shelves that didn’t appear to work well enough against HIV but
could find some promise with XMRV.
Vaccine Yes, Treatment ? - It may not be
easy, though. Dr. Coffin reiterated the fact that the viruses remarkable genetic
similarity from person to person (even between people located across the
country) meant that chances for finding a vaccine were pretty good and, in fact,
one has been developed for a similar virus. The low replication rate, however,
apparently make it more difficult to target treatments against this bug.
(Different HIV treatments target different stages of its replication
process).
(Genetic diversity is essentially a function of
replication; the more a virus replicates the more small changes in its DNA
accumulate. The fact that genetic diversity is so low in this bug suggests that
it is not replicating very much. It could also suggest that a contaminant got
into the samples but the researchers appear to have discarded this scenario.
)
In key ways HIV is the exact opposite of XMRV; it
replicates rapidly and demonstrates high rates of genetic
variability. Dr. Coffin noted that the HIV virus will mutate
more simply living in a person’s body over several months than
XMRV has between people living different parts of the country. What we
have with HIV, of course, are alot of treatment options (@30 drugs) and, despite
years of enormous effort and money - almost zero advance on the vaccine
front.
Hopefully the opposite scenario will not prove true with XMRV.
Dr. Coffin reported some antiretrovirals were proving effective at least in the
lab against the virus. (Ampligen was reportedly working in at least some
patients cells.) Translating the results from the lab to an actual patient is,
often difficult to do, however.)
Does Low Replication Mean Little or No
Disease? - Not necessarily. A virus doesn’t need to replicate in order
to effect the body; it simply needs to be alive and pumping out injurious
proteins. The idea of a kind of smoldering infection with low
replication rates has caught on in some parts of the research community.
Dr. Glazer has,for instance, identified enzymes produced by EBV that can
cause a number of negative effects.
Add to that the fact that a large percentage of ME/CFS
patients T-cells are typically ‘activated’ (turned on by a pathogen) and then
throw in Dr. Coffin’s statement that a large percentage
of activated cells carry the virus and you get the picture of a
virus that may be very prevalent in the body; i.e., it might not need high
levels of replication to do its work.
I’ve had many people come up to me and ask how I can get
involved. Dr. John Coffin
XMRV and ME/CFS - How to explain the high
apparent rate of infection in the ME/CFS patients but not the healthy controls?
Dr. Coffin thought of three main possibilities;
- the patients happened to live in areas where outbreaks of
this virus had occurred
- they had an immune system defect that left
them particularly vulnerable to the virus
- the virus actually infects everybody but is just easier to
find (is more active) in people chronic fatigue syndrome (the
opportunistic virus theory)."
13. FRESH ALOE VERA FOR COLD
SORES
From a reader--
"I used fresh aloe vera gel, right from the plant, on my cold
sores, and they went away OVERNIGHT! I've never found ANYTHING to be so
effective. All the pain, itching, even the blisters, went
away!!!!!"
14. PRAYER
REQUESTS
FROM
DOM: I added this section to the newsletter because several readers
asked for prayer this week. Our combined prayers can help lift heavy burdens.
From Linda: "Mom, who will be 84 soon... fell
5 days ago and broke her hip. The anesthesia has (temporarily, I hope)... robbed
her of her reasoning and understanding capacity. She is totally confused.
Believes she is at home and being punished for some wrong-doing. I am so scared.
She was moved to a nursing home yesterday afternoon for rehabilitation. I have
no idea for how long. Please pray for my little mama, who has
been my very best friend in life for nearly 60 years."
From Shirley: "My mom, who just turned 88,
has alzheimers disease and is in terrible pain from debilitating arthritis in
both knees. Please ask the readers to pray for her. Prayers are
needed for me to help me make the right decisions despite what the family
feels."
From Teresa: "On Sunday, my mother had a mild
heart attack while shoveling snow. Today she is having a triple by-pass
done. Please add her in your prayers."
15. DOM'S
UPDATE
This is Dom, the guinea pig.
I am
making a huge experiment during these 2 weeks I am off from teaching for the
Christmas break. With all the news about the XMRV retrovirus affecting our
DNA, I decided to try a DNA/Immune product to see what happens. It is supposed to
protect your DNA and also BOOST your immune system. Since 2001, I have
been using an immune-BALANCING powder daily with noticeable improvements in a number of areas of health and well-being. My other
most important discovery has been the oxygenating drops in
August. I have been doing considerably better with these
drops. Almost no fatigue, brain fog, no cold sores, etc. My husband
doesn't think I should tamper with success, but I wanted to try the DNA product
so I have temporarily suspended taking the immune powder to see what the DNA
product will do for me. I am only on day 4 and I am only taking half as
much as recommended (because I am always cautious when trying something new,
whether a drug or supplement). The only thing I have noticed is that I
have not slept well the past 3 nights since getting off the immune powder
- but we have also had crazy weatheer here - dropping from 85 degrees to 30
degrees, which has me shivering. As you know here in Florida, it is always
DAMP, so 30 feels quite cold. When I'm shivery, I can't sleep, despite
sleep meds www.fms-help.com/what.htm. I plan to continue my DNA/Immune product experiment
for 30 days (although the company recommended 90 days to see improvement in
immune function). If any of my scientific readers can explain this to me I
would appreciate it: Do we need to BOOST or BALANCE
our immune function? Some say that our immune system is overactive and we need to tone it down and BALANCE it,
while others say we have an underactive immune system
and that's why we can't fend off viruses, etc. The recent discovery of
XMRV causing CFIDS/FMS was a huge one, even though there were other researchers
hypothesizing for years that a retrovirus caused our illness. Basically, I want my immune system fixed and nothing
bad (like XMRV) messing around with my DNA.
I will keep you updated on my DNA
experiment as the weeks go on. If you want info about the DNA/Immune product, please write dombush@bellsouth.net
May the Lord bless you during this Christmas
season when we reflect on the incarnation: "For God so LOVED the world that
he gave his only begotten Son, that whosoever believeth in him should not perish
but have everlasting life." - John 3:16
My
personal salvation testimony is at www.fms-help.com/salvation.htm.
If anyone is experiencing holiday depression, I invite you to visit my page at www.fms-help.com/Christmas.htm. We often feel the loss of our loved ones more acutely during the Christmas season. I know that I miss my precious Dad more than words can express, although I would not want to call him back from heaven's glory to live again in this evil world.
I hope that readers who
ordered my Christmas piano CD www.fms-help.com/CD.htm will enjoy the
soothing music. I want very much to make a non-seasonal CD as well with uplifting songs of
faith and comfort.
Merry Christmas to all!
Dominie
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE