This is our very good dog, Buster, a chihuahua/rat terrier. My husband did NOT want us to get this dog 7 years ago, but guess whose BEST FRIEND he has become?? (Two guesses...and it's not me!) By the way, this newsletter is going to the dogs. Buster suggests Topics 9 & 30.
39 TOPICS in this issue. (Whew! - scroll down to check them out!) Don't miss the RED ones! Readers comments in BLACK. My comments in TEAL.
Previous newsletter: www.fms-help.com/070410.htm Newsletter archives: www.fms-help.com/newsletters.htm
Dom's Fibro Story: www.fms-help.com/fibro.htm Dom's CFIDS Story: www.fms-help.com/fatigue.htm Dom's Insomnia Story: www.fms-help.com/insomnia.htm
===============================================================================
5. JONI EARECKSON TADA - BREAST CANCER
A reader suggests that we send get well cards to:
FROM DOM: I'm sure most readers know who Joni Eareckson Tada is - a sweet, caring Christian woman who became a quadiplegic at the age of 17 from a diving accident. God used her pain and struggle to begin a ministry called Joni & Friends to help other disabled people. Joni is such a delightful, positive, joyful Christian! Her breast cancer surgery was Monday, June 28. She will need chemo, but is otherwise recovering well. Years ago, I read her book "Joni: An Unforgettable Story" and it made a deep impression on me. She was so open and honest about her physical, mental, emotional and spiritual struggle caused by the accident. It's amazing how the Lord has comforted and sustained Joni over the years and used her to do so much good and also bring people to Christ for the world to come. They say her BEST book is "The God I Love: A Lifetime of Walking with Jesus" - also available on audiobook. There are some stellar reviews at http://www.amazon.com/God-Love-Lifetime-Walking-Jesus/product-reviews/0310240085/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1 and you can read snippets of the book there.
6. CURE TOOTH DECAY??!!!
From a reader--
FROM DOM: See http://www.curetoothdecay.com/Tooth_Decay/Cure_tooth_decay.htm - I hate going to the dentist. I'm going to check this out!
7. NEURONTIN & ELAVIL
From a reader (nurse)--
"I have found in working with patients that neurontin (gabapentin) (and elavil) both are very helpful for nerve pain which is what they are used for where I work (and of course their original uses as this class of drugs starts off almost always as anticonvulsant and then mood stabilizer for bipolar). Elavil is a tricyclic antidepressant. I have not seen them used successfully for fibro pain EXCEPT for the fact that tricyclic antidepressants like doxepin and elavil (amitriptyline) can help significantly with quality of sleep which does help some people with fibro."
8. DARK CIRCLES UNDER THE EYES
From a reader--
"To the woman looking for help with those dark circles under her eyes www.fms-help.com/070410.htm. I sent for mine from TV but now it is available at ULTA. and if you don't like it, RETURN it. Whether you purchase it through television or at ULTA, a full refund is available. you might have seen the many infomercials when you suffer from insomnia...product name: HYDROLYZE - BUT IT WORKS! Within two weeks, dark circles were gone, bags were almost gone and that purplish color some of us get in the corners of our eyes...GONE! my grand daugher tried it for her allergies and it worked...once you do get your problem under control, you can then use it only two to three times a week for management instead of every night. I started doing that and I am fine. I used it every night for the first few weeks..The jar I purchased for my grand daughter has lasted 6 months so far. The jar is $45, but when lasting that long, it is not bad! I use the HYDROXIDE for my face, too. I suffer from Scleroderma.....my skin use to be nice, but this illness has wreaked havoc on my face (and other parts)....and the HYRDROXIDE has helped a lot in giving me back some of my pre-illness smoothness. it works. Also, since this product is for "repair", I use it ONLY for that, and use it sparingly (you don't need much) and rely on my Origins or Estee Lauder for the moisturizer. So, if I wash my face in the middle of the day (and I DO), i don't use the "H" product...I use only the moisturizer....the repair is done at night...(and OH IT FEELS SO GOOD!) and in the morning, as instructed... p.s. I use special cleansers and have tried them all...i mean literally - all the items on TV I HAVE TRIED...ask me about a product and i can give a review!! one thing I also like is HYRDOXIDE's very gentle cleanser...and it lasts forever!!! no sudsing...just a gentle cleanse that rinses clean. (NO, I DON'T WORK FOR THE COMPANY, LOL)."
9. HUMOR
From a reader--
And then finally the Newsletter
How Not to Find XMRV? the CDC XMRV Study : http://www.forums.aboutmecfs.org/content.php?180-The-CDC-XMRV-Study-How-Not-to-Find-XMRV
Be sure to keep abreast of all the news on XMRV on the XMRV Buzz
Page
http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx
12. WHAT A POEM!
We've voted in a
government http://www.truthorfiction.com/rumors/r/roymoorepoem.htm 13. PERSONALITY CHANGE Please respond to
Kathy cfsandme@hotmail.com-- "I read on the 100
symptoms of fibromyalgia www.fms-help.com/signs.htm that
you sent out that personality changes are one of the symptoms.
This actually really concerns me because I feel like my personality has
disappeared. I use to laugh all of the time and was really bubbly.
People use to comment on what a great personality I had. Now I can hardly laugh
and my personality is gone. I was even able to be myself even as sick as
I am up until a few years ago. I thought that it must be a medication that
I am on and I was going to ask the doctor to change it for me now I am wondering
if this is from the fibromyalgia. I was wondering if anyone can share
their personality change story with me. Since this is on the list
someone out there must be able to relate. Please e-mail me at cfsandme@hotmail.com Thanks, Kathy." FROM DOM: Wow! That's me too! I have wondered
about this lately. I've lost my zest, my joyful laughter, my interest in
life, bubbly personality, etc. It's not depression. I'm wondering if
it's been the meds I have to take to sleep that affect my brain and central
nervous system. Also, at 58, it could be "mid-life crisis" (or make that
"late life crisis"). Or maybe I just don't have the energy for extended
conversation and wasting my energy with excessive
enthusiasm?? 14. EXHAUSTION From a reader-- "I have not yet been diagnosed with FMS or
CFIDS. I am becoming more
desperate by the day for a diagnosis and treatments that will
help me resume life like a normal person. My most pressing symptom is exhaustion / fatigue / malaise / lethargy /
weakness / drowsiness. Some of your descriptions [ www.fms-help.com/fibro.htm and www.fms-help.com/fatigue.htm ]
fit perfectly: “half alive”, “so incapacitating that I would have to go
to bed”, “too tired to hold up my head”, “bowling ball being balanced on a
pencil”, “like a fish trying to swim upstream”, “collapse in total exhaustion”,
fatigued and exhausted 90% of the
time.” 15. FIBRO-MISUNDERSTANDING 16. SHERRI YOUNGWARD'S SOOTHING
MUSIC From a reader-- "Will you please thank the reader who suggested we listen to
Sherri Youngward's Christian music [in last newsletter: www.fms-help.com/070410.htm]?
I ended up buying and downloading 12 individual songs from six of her
albums and then burned them on a CD for my car. I absolutely love this
girl's voice. She sings with almost a whisper and its very soothing as she
sings scriptures and also coordinates descriptions of nature's wonders into her
music. When I drive, I love to play relaxing Christian music. It
calms me and keeps my mind on Jesus. Tip: Another wonderful girl
singer/songwriter is Kari Jobe. She has the sweetest
voice and is very open and vulnerable in her songs." 17. PCVID From a reader-- FROM DOM: Please see the info I have about CVID
(Common Variable Immune Deficiency) at www.fms-help.com/071907.htm -
Topic 8. I hope this reader can keep us posted on her
results. 21. GENE-EDEN, AN ANTIVIRAL SLEEP
SUPPLEMENT Got this from a friend-- http://www.gene-eden.com/sleep.htm http://www.gene-eden.com - In a recent study, people who suffer from
sleeping problems report better sleep with Gene-Eden, a
natural supplement that targets many common chronic viruses.
Rochester, NY (PRWEB) October 14, 2009 -- Recently, polyDNA
conducted a series of interviews with users of the natural antiviral Gene-Eden.
Analysis of the interviews revealed that the users of the supplement experience
less sleeping problems, that is, better sleep relative to the time before taking
the supplement. Trouble sleeping? Recent scientific
studies show that the cause of many sleeping problems might be an infection
with a chronic virus. As Professor Mark Opp,
from the Medical School at the University of Michigan, said: "Data reviewed
demonstrate the extent to which sleep is altered during the course of (an)
infection." One of the studies, which showed the relationship between chronic
viruses and sleeping problems, was conducted by a team of scientists headed by
Professor Jose G. Montoya from the School of Medicine at Stanford University.
The study showed that treatment with the antiviral drug valganciclovir
benefited many people who suffered from a sleep
disorder. In the study, the scientists gave the drug to a group of
patients who were suffering from sleep disturbances, and who had a high
concentration of chronic viruses in their body. The drug worked. It resolved the
sleeping problems in 75% of these patients! Gene-Eden is an all natural, broad
range, antiviral dietary supplement that targets many common viruses during
their latent or chronic infection phase. These viruses include the
Epstein-Barr virus (EBV), Herpes Simplex virus (HSV),
Cytomegalovirus (CMV), Varicella Zoster virus (VZV), Human Papillomavirus (HPV),
Hepatitis B Virus (HBV), Hepatitis C Virus (HCV), and other
less known viruses. FROM DOM: If anyone decides to try Gene-Eden for sleep,
please let me know how you do with it. Write dombush@bellsouth.net. This sounds
promising! 22. FIBRO PREJUDICE Reader 1-- 23. FLAX FOR FIBROMYALGIA & CHRONIC FATIGUE
SYNDROME From a
reader-- http://chronicfatigue.about.com/b/2010/07/07/flax-for-fibromyalgia-chronic-fatigue-syndrome.htm 24. THE OTHER BRAIN From a reader-- http://www.amazon.com/Other-Brain-Schizophrenia-Revolutionizing-ebook/product-reviews/B00328ZUNE/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1 -
"The Other Brain: From Dementia to Schizophrenia, How
New Discoveries about the Brain Are Revolutionizing Medicine and
Science" 25. MULTIPLE CHEMICAL SENSITIVITIES
(MCS) From a reader with
MCS-- "We that have MCS have a real hard time living
in this world in many ways. Many people are so nasty to us and think our
ways are weird and crazy. We are just trying to survive with our
disability but very few people see it that way. Everyone in my
husband's family turned against me and thought I was over reacting
and just plain crazy. It was too big of a problem for any of them to not
wear perfume around me. That was much too big of a problem for them and it
did not matter that their scents caused my body pain as well as many other
different reactions that would last a week or more. Hurting another person
just did not matter to them. It finally came to the point after years of
trying to make them understand that I had to say NO to them coming into my
house. My house was my one truly safe zone and spreading their scents and
perfumes around inside the house was making it unsafe for me and hurting
me. If they did not care what they did to me....I had to do the only thing
that I could do to protect myself and so I had to enforce the rule that they
could not come into the house anymore wearing perfumes and if they continued to
wear it to our house they would have to visit with my husband outside on the
covered patio. Even then they would not stop wearing the perfumes and
fragrances. Can you believe anyone being that stubborn and unfeeling
? I would never do that to someone. Just knowing something I was
doing harmed someone would be enough to make me stop it. We don't need to
understand another person's problem to be kind. If we human
beings could just be more kind to each other. It seems we have no choice
but to bear these things as best we can with grace and with the help
of our heavenly Father. What would we do without Him?" 26. NO MORE COLD SORES From a reader-- "After about six months of the alkalizing
drops I have not had one outbreak of cold sores.
Hallelujah! And, thank you, Dom." FROM DOM: I've been using
stabilized liquid oxygen drops in my drinking water since August 2009. It
has made a huge difference for me. These drops alkalize and oxygenate,
keeping the herpes simplex virus in check. I also use DMSO cream
topically. Both are great! They also make alkalizing drops for those
who drink coffee or tea. 27. NO MORE JOINT PAIN FROM DOM: I've been using the Joint Formula for
several years. Very soon I no longer needed osteoarthritis meds (hard on
the intestines) for pain relief in my hand. 28. SKULL PAIN Please reply directly
to Mary tansnan@waspwireless.com-- "I'm a fibromite and
have been for about 19 years but I've gotten so much 29. BETTER SLEEP From a reader-- FROM DOM: Anyone try this stuff? I've tried almost all
of these ingredients - either alone or together, but without success. Each
of us has a different body chemistry and sleep problem, but I'd be interested to
hear from some fibromites or those with so far
incurable insomnia. Write dombush@bellsouth.net. 30. BEAGLES RESCUED From a reader-- http://andrewsullivan.theatlantic.com/the_daily_dish/2010/07/liberating-beagles.html 31. SUNBATHING MAY MAKE CFS WORSE From www.fms-help.com/aids.htm-- "Sunbathing May Make CFS Symptoms
Worse It is being increasingly recognized that
exposure to sunlight isn't as good for people as we once thought it was. As
scientists document the damage that pollution has done to the ozone layer that
surrounds the earth and protects all living things from the sun's harmful
radiation, people are being warned that unprotected sunbathing not only
increases their chances of developing wrinkles and skin cancer, but may also
damage their immune systems. It is not known for sure how sunlight
damages the immune system, but it may be through a process similar to the way
skin is hurt by the sun's rays. The ultraviolet light that makes up part of the
sun's radiation is known to be able to damage skin cells' DNA, the genetic
material that resides in every type of cell. It's possible that immune system
cells are damaged that way by the sun, as well. It's also possible that Vitamin D, a
vitamin that people make in their bodies after exposure to sunlight, contributes
to the worsening of CFS patients' symptoms. It's been suggested that vitamin D
may not be processed properly by CFS patients, and that the resulting chemical
imbalance may make their symptoms worse. In any event, most doctors who treat CFS
patients caution them to stay out of the sun. Dr. Charles W. Lapp, who works with Dr.
Paul Cheney in Charlotte, North Carolina, advises his patients to avoid
sunbathing. In a "Self-Care Manual" that Drs. Cheney
and Lapp wrote for their patients in 1991, they also advise patients to avoid
the sun. They caution that exposure to sunshine "may reactivate herpes group
viruses or provoke skin reactions." Another reason for CFS patients to avoid
the sun is that many find that their eyes have become extremely sensitive to
bright light, a condition that is called "photophobia." Drs. Cheney and Lapp
advise their CFS patients to wear sunglasses to protect their eyes from the
sun." FROM
DOM: My experience with the sun has been two-fold. I try to get out
in the sun about 20 minutes a day, but there are days when I am battling
pre-cold sore or pre-shingles symptoms, and the sun definitely makes that
worse. I also have to wear dark sunglasses when riding in the car to
prevent sensory overload on my brain with objects rushing by and splashes of
sunshine flickering all over the car. However, I do need some natural
light each day. As a piano teacher at a school of music, I work inside
every day, and then I write the newsletter late at night, so I have to make an
effort to get out in the sun. I think our brains need a certain amount of
daylight. See my 100 Tips for Coping with Fibromyalgia & Insomnia at
www.fms-help.com/tips.htm. 32.
CHIROPRACTIC NEUROLOGY From a reader-- "I watched the set of videos
regarding chiropractic neurology and found them fascinating." FROM
DOM: See my page at www.fms-help.com/brainbased.htm. 33.
"MOMINIE" From a reader-- "I know it's difficult, but for that one
friend who does not understand, there are thousands of us, your online friends,
who love you. Your understanding of us, and your support has helped us
through so many episodes of people who don't understand. Know who you are,
Mominie to us all." FROM DOM: I
just had to chuckle. Many decades ago, I was secretary to a company with
18 realtor associates - many of whom were first time newbies. I solved all
kinds of situations for them and listened sympathetically to their problems with
clients, etc. One of them coined a new name for me: "Mominie." To my
glee, one day a piece of junk mail arrived at the office - it was addressed to
"Mominie" instead of "Dominie." No doubt a "typo" on somebody's part -
what a hoot! 35.
ANTI-VIRALS FOR CFS From a reader-- I've learned a lot from your
site, and for the past several months have been faithfully taking the immune
boost supplements you have suggested. The immune boosters
have helped for about half a year. I have been so
pleased! I'd NEVER had any med or supplements help me for that long!
Usually 3 weeks has been the maximum time anything has worked for
me. But, the immune boosters allowed me the closest thing to a 'normal'
life for 7 months - until lately. Once more, things are
not working as well as they once were. I'm starting to
crash - becoming more zombie-like each day now.
Terrifying. So, I've been
praying fiercely for the courage, motivation, residual energy, cooperative
Dr.s, and the Lord's blessing, to put an end to fighting SYMPTOMS of
CFS - and to go after the CAUSE! I have always
suspected - the villain in CFS is
VIRAL!!!! My body has been
telling me that for years! My pain has never been in my
muscles - or joints - but in the lymph nodes. Sore throats come
and go. Fever and chills come and go. Looks like a virus! Acts
like a virus! I started with short bouts of
CFS fatigue since I was infected with Hepatitis "A" - working
with [a missionary organization] in [Central America] in the late 1980's.
The bouts didn't concern me as I always recovered from them.
However, the missionary community kept receiving disturbing reports
of an increasing number of our members returning from the field with an
illness called "The It." "The It" was un diagnosable. It
was fatigue and pain that never went away. "The It" spelled
the end of any missionary team's work. For me, "It" became a permanent reality for me in
2002. I was doing mission work again in [a Central American country].
After a mere five months there, I became sick with such a severe
flu/pneumonia, I needed a breathalyzer to get antibiotics to open my lungs. I
was bedridden for nearly 3 weeks. Following that illness, energy never
returned. I could not finish my mission assignment and returned
home early. Confused. Broken in body and spirit. Everyone telling me it
was 'all in my head.' 'Just depression.' "It will go away after a
short rest.' No. Upon returning to the
USA, I began seeing more Dr.s than the woman with the issue of blood in the
Bible!. Every specialist (Except a virologist, of course.) did the same
thing - took a CBC blood test. Every test said the same thing: my white
blood cell count was LOW. Platelets - LOW, Lymphocytes -
LOW, Monocytes - LOW. Immune system - LOW!!!! How come no one
could see it - my immune system was fighting
something!!!! In desperation,
I took trips to Seattle and Salt Lake City to see specialists at the
Fibromyalgia and Chronic Fatigue Centers . At first, it seemed
like a wasted trip. I was given no treatment that worked. I
was sent home with nothing but 19 pages of blood
tests. It took me several years to
realize - but those 19 pages have since become my best friends. The
Fibro/CFS Center tested things that no other specialists thought of; viruses,
heavy metals, fungi, parasites, hormone imbalances, etc... I came home with
paperwork proving my blood work was OFF THE CHARTS with an HHV6
virus! Just stuffed from head to toe with the little
beasties! I had never heard of a virus as a possibilty! No Dr.
in Idaho heard of it, either. But then, Dr.s in Idaho know very
little of CFS. Initiate self
research. Wow! What an education! There is more than
one virus out there getting the blame for causing CFS!!!
XMRV may just be the new kid on the block. I
was amazed at the list; Such as: EBV
- (Epstein-Barr Virus); FROM
DOM: I have LOTS of info about HHV6, EBV,
Cytomegalo, etc. on my site! Try a search from the Google box on my
archives page at www.fms-help.com/newsletters.htm. I too believe that CFS is viral or possibly a
faulty immune system response to a virus. Here are
just a few links about CFS and viruses on my
site-- 36. HIV
VACCINE From a reader-- "If FMS is akin to HIV, maybe this
will help us also?! Scientists Discover Antibodies that Stop More than 90%
of HIV Strains: http://www.eurekalert.org/pub_releases/2010-07/nioa-nsf070210.php." FROM
DOM: See my page "Is CFIDS related to AIDS?" at www.fms-help.com/aids.htm. 38. DATING
WITH FIBRO From a reader--
"I am 29 and in that 'looking for a spouse' stage. I
have about 1/2 or less a normal days' energy..so. only 8 hours in my day
as opposed to 16). It's so tough to know HOW MUCH to
tell an acquaintance, friend, potential mate...Too much too
earlier is...too much...but with others, not explaining enough
leaves them perplexed,. and gives the wrong idea (lazy, disinterested,
unfriendly, ungenerous...none of these things are remotely true
about me...but I know it can appear that way, especially to new people I
meet). In addition to illness, and how to support myself, I
don't know HOW i'll possibly find a good man, that cares about me, for me,
AND accepts the limitations of this illness. I have no
time for him! Everything I do is focused on keeping my body in
shape. I realize one of the things I DESPISE most about being
ill --is that it makes one, forces one to be selfish--(at least, appear to
be). I want to be generous--give my time freely to friends, etc, and to
potential mate, etc. I feel this robs one of one's natural kindness--just
because we have to take care of ourselves all the time! I think i'm
accepting that I may never be fully better (i never, EVER
would have suspected, being such a physically, mentally, emotionally
healthy person for first 18 years of life--I never expected to get sick
and STAY sick. But now I realize, with all my limitations, all the health
related problems (no time, no money, lots of uncertainty...) I need to
find a mate who accepts all this, understand...and still knows it's NOT
ME. It's just what I have to deal with. I don't know if your
readership--how many folks are in their twenties/thirties? I'd be
curious about stories of-- well, how dating, seriously, is going...if any
feedback. E.g., when to tell what to a
potential mate (2nd date, mention? 3rd date, divulge just
how serious it is...but yet, does not define you?) Such tricky things!
another particularly difficult thing I've found, and I know others here
have express--but that I look (as you do) VERY healthy. In fact I get
complimented all the time for my glowing skin, beautiful hair, smile,
etc...Which, is nice...(honestly, I love the male attention, esp in my
early twenties ;) But I must say, people judge so much on
appearances--if only, only they now how, well, it takes all my
energy to be there, awake, focused, sitting (without stretching every two
seconds). I feel like I lead such a double life
sometimes.. two Me's - the Sick Me and the doctor life, and
the Healthy me, and the career, and dating....Such different
people! .I've told my family a few times I wish I actually LOOKED as
poorly as I feel...But my mother always says..."oh honey, then you'd never
be able to do anything--everybody would be concerned all the
time!" Ok, true, so maybe just ONE day a week, I'd like everybody to
be concerned all the time!" FROM DOM: This reader
raises a very good question. Please send advice or comments to
dombush@bellsouth.net. 39. CLOSING THOUGHTS FROM
DOM Some readers asked if anyone is doing better with their
FMS/CFIDS. The answer is yes and no. Some are, some aren't. As
you find things that help you - that work consistently (as this is a sneaky
illness) - please write dombush@bellsouth.net. My own list of what helps me is at www.fms-help.com/what.htm. I am so sorry that I can't always answer email
personally. I receive so many suggestions from readers, but only can
include a limited number in the newsletters. I do my best to keep everyone
informed. (If they ever find a cure for this thing, we can all be in an
"ex-fibromite" club!) BTW, I have many pictures now from readers and have
appreciated seeing all of you. What a joy! If you are a reader who
has not yet sent in their picture, please email photo to dombush@bellsouth.net. I will
never publish these - they are just for me to know who I am writing to!
However, many readers who sent in pictures would love to see the other
readers. If I ever get time to find a way to do this, I might just do a
photo email or something - but only with permission from each person and there
will be no names. Privacy is first and
foremost. When I get some time, I will email everyone to ask for specific
permission from those who wish to be included. I think it would be a lot
of fun! But I realize that there are those who may not want to be
recognized, for instance, if your employer doesn't know you have fibro and
you don't want them to know. (This is an important topic in the fibro
world: "To tell - or not to tell.") Love and prayers, Dominie ============================================================= II Corinthians 1: 4 -
"[God] 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. 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.
that's rotting at the core,
Appointing Godless
Judges;
Who throw reason out the door,
Too soft to place a
killer
In a well deserved tomb,
But brave enough to kill a baby
Before
he leaves the womb.You think that God is not angry,
that our land's a
moral slum?
How much longer will He wait
Before His jud
How are we to face our
God,
From Whom we cannot hide?
What then is left for us to do,
But stem
this evil tide?
If we who are His children,
Will humbly turn and
pray;
Seek His holy face
And mend our evil way:
Then God will hear
from Heaven;
And forgive us of our sins,
He'll heal our sickly land
And
those who live within.
But,
If you
don't - then you will see,
A sad but Holy God
Withdraw His hand from
Thee.
www.fms-help.com/misunderstanding.htm - a friendship is rescued that almost dissolved due
to "fibro-misunderstanding"
"I just received my diagnosis yesterday. It is
Primary Common Variable Immune Deficiency. I'm sharing this
with you because some of your symptoms sound very much like mine. I will be
starting treatment over the next couple of months. Treatment invloves
infusion with antibodies from donor blood. I am hoping this
will make me feel like myself again. Because our symptoms are so similar you may
wish to be tested for PCVID if you have not already."
18.
NEURAGEN
From a reader--
"I noticed a few people talking about the
homeopathic "Neuragen" [www.fms-help.com/060710.htm and www.fms-help.com/061210.htm].
I decided to try it, as I have to try everything at least once. It really
does decrease the pain in my feet, but the smell is so unbelievably
powerful that I can smell it all day long, and sometimes even taste it. I
didn't find it that helpful and will not buy it again."
19. DIATOMACEOUS
EARTH
From a reader--
"We have used Organic Diatomaceous Earth for years as
insect control in the house and yard as well as parasite control in our two
cats. Recently on a forum someone left a link to http://www.earthworkshealth.com,
where I read for the first time of Organic Food Grade DE and all the benefits
that various persons have reaped from taking DE orally as mixed in
liquids, yogurt or applesauce. I was spellbound, KNEW this was an
important God informercial and read the ENTIRE website - even the "About Us" box
with two drop downs, one of which is "Heaven". The "Heaven" drop down box
contains a very compasionately explained Biblical plan of salvation plus
encouragement to contact the Smiths and share the good news of their
salvation choice. I am astounded about this totally natural God
given DE! After a little more investigation and a heartfelt
prayer of thanks, Hubby and I began taking DE that day and have
tolerated a tablespoon a day very well. The Food Grade DE is a slightly
gritty to the touch powder consistency and mixes easily in liquids, then
needs stirring to consume it all as it settles out because it does not dissolve,
only gets moistened and becomes somewhat suspented in the liquid. There is
no taste and by the fourth day I was no longer aware of the very slight
grittiness of the DE drink. We both mix about 1 TBSP of DE in our
morning protein drink and find it very palatable. I experienced a good bit
of detoxification symptoms for the first few days
which have now lessened considerably but are continuing so I KNOW this stuff is
doing something wonderful. And Mr. Constipation stated with surprise that
the dryness of his stool was significantly less but otherwise he has had not
discernable effect that he can note. Today I read some more about DE and
tracked down this article
http://www.vitaletherapeutics.org/vtlmntox.htm.
I sensed it was time to let the FM group know about this totally nontoxic
mineral based product. This article tells about the effects of DE
in removing heavy metals including dental mercury from the
body. I have called our local feed store to see it they will
order it as Earth Works says the shipping is less when shipped to retailers than
to the public. We plan to lay in a good supply and switch to this brand
permanently. I have now also found references on other health product
forums."
20. AIR
MATTRESSES
From reader (same as #19
above)--
"Second BIG change at our house is that we purchased
via Walmart online a package of two twin Coleman air mattresses
for future camping trips. In the product reviews was the testimony of a
man and wife who had spent a big bundle on an air bed that still did not provide
help with sleep. They bought these same twin Coleman mattresses,
zipped them together and put them on the expensive bed as a mattress topper
saying that they now sleep very well and he could not believe such a small
expendature produced such grand results. Well, monkey see - monkey do at
our house. Hubby and I are older and turn at night because hip or shoulder
or leg gets to hurting from the pressure on the bed. Knowing too much
about the awful outgassing of foam matress toppers, we knew they were not a
choice. Well we aired up the Colemans - about 2/3 full to start, zipped
them together and placed them under the layers of cotton toppers and down
comforters we had on the bed trying to get a softer surface, hoping to avoid the
plastic feel of the mattress. Naptime came and my husband did not move for
3 1/2 hours! I have never seen him so still in sleep. When I awoke
after only 45 minutes I was miffed I did not sleep longer - until I realized I
felt rested (wonder of wonders). It has only been two nights now, but we
are absolutely sold on keeping the air matresses as our new mattress
topper. They are very squooshy and a bit difficult to turn and reposition
on, but once I lay down and make that effort to get everything aligned and
comfortable it feel like I am floating on God given clouds as there is NO -
absolutely NO pressure spot even after 8 hours of sleeping - which I did the
first night!. I do not know if other air mattresses would do the same
thing, only that the Coleman twins DO. I used to sleep on a larger pillow
to help elevate my shoulders a bit and lessen any lingering reflux. But
with the Coleman filled to squooshy, my bottom almost touches the bed while my
upper torso and legs become somewhat elevated on the mattress so I have very
comfortably switched to a smaller pillow. We aired these plastic
mattresses outside for about a week of sun and rain before cleaning them and
bringing them in. I am usually ultra sensitive to the smell of plastic and
cannot smell these at all (of course they are secured under quite a bit of
bedding as explained above). I would imagine they would get too hot if it
were just one sheet over the air mattress, but the way we remade our bed we are
both getting a MUCH better quality of sleep. Phooey with what a bed
"should" look like - we treasure receiving the rest our Lord intended we
have. Our bed is queen size so the matresses hang over each side a bit BUT
and we put pillows at the foot to take up the space because twin is not as long
ans queen. The wonderfully HUGE summer bedspread my Sis gave us covers it
all almost to the floor still. I just had to share sugh a significant,
economical discovery with others who might benefit! My
husband and I talked this morning about waking up without joint
pain or joint stiffness since we have started the DE and are sleeping on
the new air mattresses. He and I both find that moving first thing in the
morning is much easier and pain free now. But because we made both
changes around the same time we do not know if it is the Diatomaceous Earth or
the softer and fuller body support of the air
mattress."
FROM DOM: A few months ago we had company and I
ended up sleeping in my office on an air mattress (actually two of them).
The top one was about 2/3 deflated and I slept like a baby - I don't think I
moved for many hours. It cradled my body so comfortably. However,
the next night it didn't seem to have that effect - but I have battled
insomnia for 42 years, so you really can't go by my experience. It's
definitely worth a try!
"I was watching one of those 'judge' shows
and the defendant had a lot to say about the accusations by the plaintiff...I
did not see the judgment made...but what angers me is this: when the
plaintiff explained she needed an hour break of being a nanny to the def's
daughter, she was then ridiculed by the defendant.."oh yes, I looked up
fibromyalgia (plaintiff's illness) and it is a what they call it when
someone is always complaining and too lazy to work".....the judge only
said "oh that might not be fair"...and went on to say 'well, let's get on with
...."...the JUDGE seemed to be embarrassed for the plaintiff, but I THINK SHE
MIGHT HAVE NOT UNDERSTOOD FMS, EITHER....SHE DID NOT SAY ANYTHING TO THE EFFECT
THAT IT IS A REAL ILLNESS, ETC. IF THAT DEFENDANT HAD SAID 'OH HER
CANCER JUST SHOWS SHE IS LAZY"....THAT JUDGE WOULD HAVE BEEN ALL OVER
HER!! THIS IS EXACTLY WHY I DO NOT LIKE TO TELL ANYONE (INLCUDING
AND SOMETIMES ESPECIALLY DOCTORS) THAT I HAVE FIBRO. SINCE I HAVE
THE FORTUNE(?) OF HAVING OTHER ILLNESSES, I CLAIM ONE OF THEM...ANYTHING BUT
FIBRO!! I think I am more sick of THIS than the actual illness
itself! I hate the commercials for Lyrica that seem to show how a person's
life can be NORMAL if you take that product....they do the same thing to RA meds
- makes me wonder if those with RA want to scream for the same reason. RA IS
PAINFUL!"
Reader 2--
"I lost a friend because she said I was
always sick, and another one because she thinks fibromyalgia could be
contagious."
FROM DOM: See Topic 15
above.
worse the last few
years. Apart from the severe to migraine headaches
that I had suffered
with for a long time, and also a soreness that gets
all over my
head, I have for a few weeks now suffered a new type of pain
all
over my head. I will be fine one second and the next the pain
just
takes over my entire head--not a headache but pain in the muscles
covering
my skull. It is so tender that I can't stand for the back of
my head to
touch a recliner or mattress or anything.
As I said, I've
suffered with my skull/muscle area in the head getting
very sore/tender etc
for years but this is different. It's a miserable
pain that starts at
the base of my skull at my neck and just covers all
the way to my forehead.
It actually makes me feel sick. My sister, an RN
for 35 years, was
going to stretch the muscles around my neck to try to
help me. I told
her about my head and she was going to try to rub it and
as soon as she felt
the back of my head she was very surprised to learn
that my head is swollen.
She said she could even feel a pocket of
inflamation and said it appeared to
be inflamation all over my head.
Please ask your readers
have they ever gone to the doctor with something
like this and what did he
diagnose/prescribe for it. I'm so miserable but
I feel like the doctor
may sure enough think I'm nuts. I'm very
discouraged right now. - Mary
tansnan@waspwireless.com" 34.
THE SILENCE OF THE DYING
From a reader--
Dr.
Dantini in FL uses antivirals to help CFS patients. He can be found on my
site too. Use search box. The antiviral I use to
keep cold sores and shingles at bay is acyclovir. Cheap. I've tried
Valcyte (didn't help) and also Famcyclovir (horribly expensive) when I was
battling shingles last year. My cold sore page is at http://www.fms-help.com/coldsores.htm.
I
wonder if the immune BALANCER I used for 8-1/2 years would help this
reader? I used to have the constantly swollen glands, sore throats, low
grade fevers, etc. back in my really bad CFIDS days and this stuff helped.
If I missed a day, my system would crash.
37.
READERS' PRAYER CORNER
Susan - My friend
Pam's daughter, Meg, just gave birth to a baby girl
yesterday. However, Meg had to be whisked away within 20 minutes of the
birth for cancer testing, as it appears she may have aggressive leukemia
and they may be starting chemo immediately depending on more blood
testing. Please pray for Meg, her husband and baby. (Meg's mother,
Pam, helped Susan start the first fibro support group in their area in
1996, so please pray for Pam's stress levels and fibro during this
difficult time.)
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME
HOMEPAGE
