DOM'S FMS/CFIDS
NEWSLETTER
April 23,
2009
A Christian-based
newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune
Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their
families.
23
TOPICS IN BLUE. READERS' COMMENTS IN
BLACK. MY COMMENTS IN TEAL.
DON'T MISS RED TOPICS!
1. READERS
WRITE
"I was diagnosed last
year with CFS. I love your
site!"
"My story is so very
similar to yours www.fms-help.com/insomnia.htm. I haven’t slept for 15-20
years and have tried absolutely everything and spent thousands of
dollars on numerous remedies. My marriage is in pieces because of my CFS
and lack of sleep."
"Reading over your
site www.fms-help.com has been an
insightful validation for most of what I seem to be going
through."
"I was
surfing the net the other day and came across your website. It's taken me a couple of evenings to get through all of the
pages, because of the fog, but I just want to say that you are AMAZING!!!
So many of the things that you have written I could have written
myself."
"Thank you for all the
wonderful work that you do."
"My husband
is faithfully taking his [immune] drink daily and has found better
rest/sleep in the
evenings."
"I have been reading
your site intently and am really getting some great
information. I am going to print out your stuff and keep it with
me for my doctor visits."
"I feel like if I could
unzip my skin, pull out the muscles and 'ring' them out like a wet towel and
reinstall, I would feel better. The insomnia is another
story. That part is brutal."
"I just finished
reading your online article “Marital Harmony" www.fms-help.com/marriage.htm. It is really good. I am going through a rough time in my
marriage right now."
|
"I agree with what you
say about this dreadful disease being viral and how it
attacks us. Nice to have someone like-minded.
This has been the result of my own studies and experiences over 10 years
of suffering from FMS."
"Just venting to one who
has fought a long fight well."
|
"I can't begin to tell
you how much I appreciate your website www.fms-help.com and your sharing all of your valuable
information and experiences. I have been glued to it since I
found it."
"I ran into your website
by accident. What I am most happy about is that you are a
Christian. How awesome."
"Your story www.fms-help.com/fibro.htm really hit home. I have IBS, TMJ, General
Anxiety Disorder, and Insomnia. I cannot sleep without taking
medication. I just wanted to thank you for your website. It
is filled with great information."
"Thanks, Dom, for your
wonderful e-mails and the care and understanding that only a
fellow fibromite can give."
2.
EMOTIONS AND THE IMMUNE SYSTEM
From an immunologist /
microbiologist--
"Many people have some
version of Fibro/CFS due to trauma. So many people with whom I speak
started feel badly after trauma. If you had low-grade inflammation all
these years, and now it is full blown
inflammation, rebalancing immunological responses may give major
comfort. Also, pain is the result of immunological responses,
etc. You have nothing to lose in trying [the immune balancing
powder]. In reference to having a "broken brain," as
you know, there is a major involvement of immune function with emotions
and the nervous system--it is only articificially separated by
docs. Balance immune function and make a difference in
attitude https://www.securedcontent.net/legacy/web/resources/MindBody.pdf."
FROM
DOM: This is a fascinating document!
3.
ELECTROPOLLUTION
The BIOPRO chip reduces EMR
fields on cell phones, computers and electronic
equipment--
4.
MISUNDERSTANDINGS DUE TO FIBRO
Reader 1--
"Some look down on
me because I have SSI and medicaid which I got because of terrible
depression, fibromyalgia and glaucoma. I did not ask for this. On a very
bad day I can't get out of bed because I am so tired, or because I can't
sleep...the muscle tightness and stiffness. Sometimes I cannot even hold a
clear thought. These people tell me that I have these benefits
because of them paying taxes. What do they want..for me to shoot myself? You
know, some day they could also need help on account of an illness, but they
don't think! They think they will always have good
health. I took care of both of my parents, they are now
gone. My father made a living hell for me and mom. He was an
alcoholic. I don't know how, but I survived. Now that they are gone,
I should be happy and healthy, enjoying my life. Well, this
fibromyalgia is making my life a living hell. Life is not
fair! Thank you for having a wonderful newsletter and hopefully
There will be a cure for this."
Reader 2--
"My boss says
that 'there is no such thing' as fibro...... the doctors just
tell you that's what you have because they are too lazy to figure out what is
really wrong. Or at least that's what HIS doctor told him. I sent
him a link to your site www.fms-help.com, and
told him to read it slowly."
5. RIFE
TECHNOLOGY
"I read with
much excitement the article expressing your interest in Rife Technology. I
am in Southern California and have been using a safe, non-invasive energy
technology called Quantum Biofeedback, which is used to map and balance the
immune system in order to identify and influence stress, pain and relaxation
related issues. My SCIO Device has Rife Frequencies built in and I often
refer to Dr.Nenah Sylver's manual: The Rife Handbook of Frequency Therapy
during a client session. I had previously contacted you about my belief
that electropollution is a factor that should be addressed. Dr. Garvy [St.
Augustine] also feels that noxious fields (electromagnetic and geomagnetic
fields) and heavy metals, such as lead, mercury and aluminum need to be
eliminated. When I saw the impact that electropollution was having on some
of my clients, I became involved with Biopro Technology to offer a solution
www.mybiopro.com/keepsmiling.
I would be happy to offer my Quantum Biofeedback services to anyone in
Southern California with the goal of conducting a study at a reduced
fee. Feel free to contact me anytime." - Donna Woodworth
donnawoodworth@aol.com
7. SLEEP
PROBLEMS LINKED TO SUICIDAL BEHAVIORS
From a
reader--
8.
CHANTIX
From a
reader--
"I do NOT care what others may say about this particular drug -
Chantix. For ME, it has been my true life saver! Serotonin: the ONE
thing that is missing in all who suffer from Fibromyalgia and this is THE one
thing that Chantix makes available. I've been taking it for 8 months now with
absolutely surprising results. My dexterity is such now that I can once
again use my computer for longer than 15 min at a time; I can go to the store
once a month rather than once a week now...as I can put away ALL groceries
before the pain begins...and when it does, it has never returned as it did
BEFORE I began taking Chantix. It is an
anti-depressant but works in a new way. It "unblocks" the path to the
Serotonin allowing for it's release into the system. People with Fibro
have the amount of Serotonin they need but can't get to it because the Fibro
sets up barriers. Chantix breaks them down! My pain level has decreased tremendously. I've been able to cut
back on the amount of narcotics that I'd had to take prior to beginning this
medicine...meds I've needed and been on for SEVEN years! CHANTIX isn't a cure...but it literally saved my life. I was on
the verge of just chucking it all in...so very tired of the constant pain and
not being able to take care of myself and my pet properly. This med is
issued for those who want to quit smoking and while I do still smoke and cannot
take but a small dosage of CHANTIX, it is enough to make my quality of life one
that makes it worth living once again. I
truly believe that anyone with Fibro who is on narcotics or pain to try this
medicine."
FROM DOM:
Chantix (varenicline) is a smoking cessation medicine.
9.
SLEEP
From a
reader--
"I am using
Valerian (Nature's Way) and Passionflower - one capsule each one hour
before bed and have not slept this well in years.
Rx sleep aids always made
me feel worse and drugged up. I got onto the consumber lab website to research
brands and this Nature's Way brand was one of the ones they recommended. since I
have been using the herbs for the last month almost, I have not woken up at
3
AM as usual and stared at the ceiling or clock, I am much calmer, and my pain
has decreased significantly along with the insane
carb cravings. I
have also gotten a very interesting book c alled 'The Edge
Effect' by Dr. Eric Braverman. Explains a lot about the
neurotransmitters (GABE, Acetylcholine, serotonin and dopamine) and the symptoms
deficiencies in any one of those causes. A very interesting quiz to take and I
was surprised with my results. I think it explains some of my symptoms as
well."
10.
LAURIE'S NEW SITE
Laurie is a
newsletter reader who recently began her own FMS/CFS site with a lot of
interesting links. It has a friendly, upbeat
tone.
Not Just Living With
Fibromyalgia, But Thriving!
11. HOT
FLASHES
A reader
wrote asking what she can do about hot flashes. Here was my reply and I am
open to other suggestions any readers may have. Write dombush@bellsouth.net. Hot flashes are so
miserable. I still have them at times, especially in Florida where the heat and
humidity are so extreme. I have a cloth bag filled with rice that I keep
in the freezer. Putting it on the back of my neck for a few minutes stops
the flashes. Also, I found that my body wash was leaving a film on my skin and
"sealing in" the heat. I went back to using Shaklee Basic H - just a few
drops on a wet washcloth, and my skin feels silky and not loaded down with
gunk. As you know, you can't sweat efficiently if your pores are clogged
with residue. I use vaginal estrogen, since I don't tolerate oral
estrogens very well. I had a hysterectomy 24 years ago due to
endometriosis, but had to give up on premarin because my system was all messed
up. Some people say that herbal preparations help, such as estroven and
remifemin, but I tried all those with no help. I think some of my hot
flashes are not just hormonal, but also have something to do with this FMS/CFIDS
virus that I seem to be carrying and coping with, until one day it can be
eradicated. Another think I like is the Chillow, that you can buy at the drug
store. You fill it with water and can sleep on it, and it feels
cool."
12.
EMPLOYMENT FOR PEOPLE WITH FMS/CFIDS
"What types of
jobs / employment do your readers with CFS/fibro do? I am forced to
go back to work due to financial problems and I am looking for jobs that are
flexible, possible work from home jobs. Is there any list
of “jobs that work” with our limitations. My background is in healthcare
but many of those positions are high energy / rigid schedule jobs. I
would be grateful for anyone who could share some information…..please feel free
to give my email address to anyone who could offer some help.- Debra djbsack@verizon.net"
FROM DOM: I have had several newsletters on this important topic!
Go to www.fms-help.com/newsletters.htm and type any of these words into the search
box:
job
"work from
home"
"work at
home"
employment
My stepdaughter
compiled a lot of good information in one of those
newsletters. Personally, if I weren't a piano teacher and able to make my
own hours, I would be doing a search just like this!
I have a piano mom (non-fibro) who does medical transcription from
home. She shares the job with some other ladies, and they sign up for
which hours they will be on their computers. If
you have any other job ideas that are do-able for people with FMS/CFIDS,
please write dombush@bellsouth.net and I'll share the
info in an upcoming newsletter.
13.
FIBRO360.COM
New
site and support group for people with fibromyalgia at
http://www.fibro360.com - run by the Fibro & Fatigue Center. Lots of
info!
14. DO
CELL PHONES CAUSE BRAIN TUMORS?
15.
PROTOCOLS USED AT THE FIBROMYALGIA & FATIGUE CENTERS
www.fms-help.com/tips.htm - 100 Tips for
Coping with Fibromyalgia and Insomnia - things I learned since 1982. I am
not a doctor, just an FMS/CFIDS survivor. This is written from a patient's
point of view.
16. BEWARE
OF RED YEAST RICE EXTRACT
From a
reader--
"I wanted to warn
you (and hopefully you'll include this in a newsletter to warn others) -
people with CFS/Fibro should be careful about taking Red Yeast Rice
Extract.
My doctor put me on it
last fall because my cholesterol levels weren't "happy." I'd already made
it clear that Dr. Teitlebaum warns against prescribing regular
cholesterol meds for people with fibro, since they can induce fibro in
normally healthy people (it's because they leach Co Q10 from
the body and that's found in every cell as a necessary component for
energy). I had friend who'd taken the Red Yeast Rice Extract and I
thought...yeah great.
From the moment
I started taking it, the problems began. First, the great burst
of energy and stamina I'd had last summer started to wane. Then I had a
fibro flare for 2 1/2 months. I started developing Achilles tendonitis
(that's still with me to a lesser degree). I gained 10 pounds. And
it all culminated in February when growing gut problems got so bad, I spent most
of our vacation on a cruise too sick to enjoy anything or sleep at night and
nearly unable to find anything to eat that wouldn't cause stomach
problems. When my acupuncturist said my liver was
stagnant, bells and whistles went off in my head.
When I first purchased
the Red Yeast Rice Extract, my buddy at the Vitamin World really encouraged me
to get the version that was coupled with Co Q10. As he put it, just
because it was natural didn't mean anything since the natural cholesterol
products work in the same manner as the pharmaceutical cholesterol drugs.
I also remembered that when my ex was on Zocor, his doctor did regular liver
enzyme profiles to make sure it wasn't damaging his liver.
So I did the thing
I should have done BEFORE I ever put this supplement in my mouth. I got
online and researched it. What I discovered shocked me. First,
Red Yeast Rice Extract is what the cholesterol drug Mevacor was derived
from. It can have the EXACT same side-effects as the pharmaceutical
drug. Every problem I'd noticed since beginning the supplement is one of
the side-effects of MEVACOR.
I stopped taking
it and within 48 hours had nearly as much energy as I'd had last
summer. The fibro is but a memory. My gut is just fine,
thank you. My head is the clearest it has been in over half a year.
The tendonitis is still with me, but I've begun losing weight (5 pounds) and I'm
hoping that as I continue to lose, that will ease.
Please warn others to be
careful of even what supplements they take. There is one out called
Sytrinol that has 12 years of clinical research behind it. It's derived
from citrus fruits and in all the studies conducted, it has shown no
side-effects in either animals or humans, yet it has proven to be very effective
for cholesterol. That or Niacin, if you can tolerate it (I can't).
Artichoke heart extract is another good alternative. But be
careful what you take, research it carefully, and note any side-effects you
start feeling after you begin taking it. Supplements are NOT
side-effect free. Remember, digitalis is derived from the Foxglove plant
(a natural substance). Foxglove supplementation can kill you as quickly as
digitalis in an incorrect dose."
17. LYME
OR FMS/CFS?
From a
reader--
"Dr. Shor, from
Virginia, was interviewed in a public health alert magazine as stating
at least 50% of his CFS and FMS patients actually have Chronic Lyme and or
Coinfections. He will be interviewed on a public radio station with Diane
Rehm. He was at the recent CFS International Conference.
INTERVIEWS with Diane
Rehm
For those with Sirius radio, she is
about Channel 134 or 135.
ON THE MARC MEDIA
ANNOUNCEMENT
On the Marc Media is pleased to
announce that NPR'S, The Diane Rehm Show will be discussing the Lyme
disease controversy and UNDER OUR SKIN, an eye-opening film investigates
the untold story of Lyme disease, an emerging epidemico larger than
AIDS. Diane Rehm will also be discussing Pamela Weintraub’s
book, Cure Unknown, Inside the Lyme Epidemic.
This is a huge
opportunity to educate the masses about the seriousness of Lyme
disease. The Diane Rehm show, which has been on the air
for 25 years, has more than 1.7 million listeners each week and has become one
of public broadcasting’s most-listened-to programs.
Special Guests Monday, April 20
Pamela Weintraub, author of Cure Unknown, Inside the
Lyme Epidemic
Dr. Samuel Shor, Associate Clinical Professor at George Washington
University and Internal
Medicine of Northern Virginia
Richard
Blumenthal, Connecticut Attorney General
Dr. Philip Baker,
Executive Director of American Lyme Disease Foundation
18.
MRSA
I have a friend who
has been struggling with MRSA ever since she had lapband surgery last November
for weight loss. She has an incision 6"deep and 18" long that won't
heal. She wears a wound vac and a nurse comes to clean out the incision
every night - an extremely painful process. She is married with 2
children, both with health challenges. I mention all this to say that if
any of my readers are struggling with MRSA and did not receive my emails on this
last year, please write dombush@bellsouth.net and I would be glad to send them to you. I sure wish
that my friend would consider something other than what the doctors are doing,
which isn't helping so far, and it's been 6 months now! She also had to be
re-operated on to remove more infected tissue and the story isn't over
yet. She was formerly an active and involved member of our
local community, but this horrible situation is driving her bananas and
keeping her home and away from people. I know that FMS/CFIDS is majoy
challenge in life, but as I consider my friend's plight, my heart goes out to
her!!!
19.
FIBROMYALGIA AWARENESS DAY - MAY 12, 2009
This is the best thing I've
found to help people understand FMS/CFIDS. It would be great to email
this to friends and family on May 12 to increase awareness of our
complex and often misunderstood illness.
Understanding Fibromyalgia - an open letter
20. ONIONS CAN
CAUSE FOOD POISONING
From a reader--
"Written by Zola Gorgon - author of several cookbooks.. Watch out for
those spoiled onions...
THE too too long STORY HAS TOO MUCH
PERSONAL DETAIL ABOUT WHO SHE KNOWS AND WHAT INGREDIENTS ARE IN MAYO WITH ALL
EXTRA INFO....UNNEEDED INFO. SO I AM DELETING THE 'NEWSY' STUFF...WHICH
MIGHT MAKE THIS A BIT "?????" BUT THE FACTS ABOUT ONIONS IS LEFT
UNTOUCHED...WHICH IS THE IMPORTANT PART, ANYHOW.
BEGIN:
I had the l privilege of touring
Mullins Food Products, makers of mayonnaise.
Questions about food poisoning came
up, and I wanted to share what I learned from a chemist.
Ed is a chemistry
expert .....
During the tour, someone Asked
if we really needed to worry about mayonnaise.
Ed said that all commercially-made
Mayo is completely safe.
"It doesn't even have to be
refrigerated.
" He explained that the pH in
mayonnaise is set At a point that bacteria could not survive in that
environment.
Ed says that when food poisoning is
reported, the first thing the Officials look for is when the 'victim' last ate
ONIONS and where those onions came from (in the potato salad?).
Ed says it's not the mayonnaise (as
long as it's not homemade Mayo) that spoils in the outdoors. It's probably the
onions, and if not the onions, it's the POTATOES..
Onions are a huge magnet for
bacteria, especially uncooked onions. You should never plan to keep a portion of
a sliced onion. He says it's not even safe if you put It in a zip-lock bag and
put it in your refrigerator. It's already contaminated enough by being cut open
and out for a bit, ...... (,,,,, watch out for those onions you put in your
hotdogs at the baseball park!)
Ed says if you take the leftover
onion and cook it like crazy you'll Probably be okay, but if you slice that
leftover onion and put On your sandwich, you're asking for trouble.
Both the onions and the moist Potato
in a potato salad, will attract and grow bacteria faster than any Commercial
mayonnaise will even begin to break down.
Also, dogs should never eat onions.
Their stomachs cannot metabolize onions."
FROM DOM: WOW!
This explains something that happened to me 8 years ago! While traveling
in GA, I went through a Checkers drive-through and took a hamburger back to my
motel room. Very shortly thereafter, I began having symptoms of food
poisoning, only it was worse because I also got violent vertigo - the
room was spinning for hours and I had to lie on the bed, holding on for dear
life. My husband was visiting relatives and I could not reach him by
phone. What an ordeal! I always knew that it was the onions on the
burger that made me so violently sick, but you never hear about it, until today
when a newsletter reader sent this info. Also, about mayo not needing
refrigeration (commented on above), Donnie knows a lady who doesn't refrigerate
her mayo - it makes me shudder to think about that, but evidently it is
true. Here at home we are so careful about eating fresh food - when in
doubt, throw it out. I can think of few experiences in life worse than
food poisoning.
21. AN OBESE
NATION
Reader 1--
http://www.care2.com/c2c/share/detail/621352 -
interesting article! MSG is in EVERYTHING!! It is a slow
poison. MSG triples the amount of insulin the pancreas creates,
causing rats (and perhaps humans) to become obese. They
even have a name for the fat rodents they
create: "MSG-Treated Rats."
Reader 2--
"One of the best overviews of the very real
dangers of MSG comes from Dr. Russell Blaylock, a board-certified neurosurgeon
and author of “Excitotoxins: The Taste that Kills.” In it he explains that MSG
is an excitotoxin, which means it overexcites your cells to the point of damage
or death, causing brain damage to varying degrees — and potentially even
triggering or worsening learning disabilities, Alzheimer’s disease, Parkinson’s
disease, Lou Gehrig’s disease and more.
Part of the problem also is that free
glutamic acid is the same neurotransmitter that your brain, nervous system,
eyes, pancreas and other organs use to initiate certain processes in your
body.[4] Even the FDA states:
“Studies have shown that the body uses
glutamate, an amino acid, as a nerve impulse transmitter in the brain and that
there are glutamate-responsive tissues in other parts of the body, as
well.
Abnormal function of glutamate receptors has been linked with certain
neurological diseases, such as Alzheimer’s disease and Huntington’s chorea.
Injections of glutamate in laboratory animals have resulted in damage to nerve
cells in the brain.”[5]
Although the FDA continues to claim that consuming
MSG in food does not cause these ill effects, many other experts say
otherwise.
According to Dr. Blaylock, numerous glutamate receptors have been
found both within your heart’s electrical conduction system and the heart muscle
itself. This can be damaging to your heart, and may even explain the sudden
deaths sometimes seen among young athletes.
He says:
“When an excess of
food-borne excitotoxins, such as MSG, hydrolyzed protein soy protein isolate and
concentrate, natural flavoring, sodium caseinate and aspartate from aspartame,
are consumed, these glutamate receptors are over-stimulated, producing cardiac
arrhythmias.
When magnesium stores are low, as we see in athletes, the
glutamate receptors are so sensitive that even low levels of these excitotoxins
can result in cardiac arrhythmias and death.”[6]
Many other adverse effects
have also been linked to regular consumption of MSG,
including:
• Obesity
• Eye
damage
• Headaches
• Fatigue and
disorientation
• Depression
Further, even the FDA admits
that “short-term reactions” known as MSG Symptom Complex can occur in certain
groups of people, namely those who have eaten “large doses” of MSG or those who
have asthma.[7]
According to the FDA, MSG Symptom Complex can involve
symptoms such as:
• Numbness
• Burning
sensation
• Tingling
• Facial pressure
or tightness
• Chest pain or difficulty
breathing
• Headache
•
Nausea
• Rapid heartbeat
•
Drowsiness
• Weakness
No one knows for sure just how
many people may be “sensitive” to MSG, but studies from the 1970s suggested that
25 percent to 30 percent of the U.S. population was intolerant of MSG — at
levels then found in food. Since the use of MSG has expanded dramatically since
that time, it’s been estimated that up to 40 percent of the population may be
impacted.[8]"
22. MERCURY
FLUORESCENT BULBS
From a reader--
Since we may be getting this light bulbs
whether we want them or not, we should all be aware of what to do if we break
on. Never let a child handle one of these bulbs.
23. DOM'S
UPDATE
I've been doing
very well lately. Donnie and I had a great time at the Clay County
Fair. It was only 10 minutes from our house, so I had no travel
problems. I had a wonderful day and felt like a NORMAL PERSON!
What a joy that was! I've had a good run with my health for several
weeks, for which I am most grateful. Here's a picture Donnie took of
me in the "Old Florida" section. We enjoyed collard greens, corn
bread and ice cream - Southern favorites! The weather was sunny and in the
low 80's. Earlier that week we got 5" of rain in 24
hours!
Now here's a
neat little tip that has nothing to do with FMS/CFIDS except to make our live a
bit tidier in this day and age of non-stop email communication:
You can
clean up your email forwards of all those annoying >>>>
marks by downloading a free program called "Email
Stripper" www.papercut.biz/emailStripper.htm. I've been using it for years. If
you are like me, you get tons of email - some of it is really good
stuff, but it's been forwarded a zillion times. It's easy to make it
readable again when you want to send it on. With Email Stripper, you just
paste, clean, and copy (3 easy clicks).
We had a wonderful Easter
presentation (drama, choir, orchestra) at church last weekend
- it was well worth all the extra rrehearsals and effort that went into
it. I hope the audience was blessed as much as we were in preparing
it.
I continue to have to be
very careful of my stress levels and also take meds and supplements that help
me. A list of things I use is at www.fms-help.com/what.htm.
If I didn't have a sleep disorder www.fms-help.com/insomnia.htm, I
would need virtually no meds at age 57, just supplements - but I've had a sleep
disorder since I was 16. Without sleep, I would die. Before I was
adequately medicated, I went so many years living on just 1-3 hours of
sleep per night. That wrecked my health and brought about the FMS/CFIDS, I
believe. There is
much fascinating information, research and encouragement on my
FMS/CFIDS homepage at www.fms-help.com. I began the site in 1996, writing it from the point of view of a patient looking for answers.
Dominie
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100 Tips for Coping with Fibromyalgia &
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My Fibromyalgia
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Fatigue Story
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II Corinthians 1: 4 - "Who comforteth
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that we may be able to comfort them which are in
any trouble, by the comfort
wherewith we ourselves are comforted of
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Homepage at www.fms-
help.com
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