DOM'S
NEWSLETTER
July 1,
2007
A
compassionate, informative newsletter for people with FMS/CFIDS/ME.
TOPICS BELOW ARE IN PURPLE.
MY COMMENTS ARE IN TEAL.
Don't miss: #9 - Teen male develops CFIDS, #13 -
"I'd Rather Be Working," #22 - Brain Virus, and #24 - Dom's Update - Still feeling
great!
1.
READERS WRITE
"I
enjoy every bit of the news letter you send
me."
"Your site www.fms-help.com is amazing--certainly
the most informative of any online."
"Thank you for your
newsletter. I read it every
time."
"Your web site has
been a wonderful treasure chest of stories, inspiration and
helpful hints and resources."
"The work you do for
all of us that are severely stricken with fibro is truly a
calling for the Lord, and I cannot tell you how much I appreciate your
newsletter and all the time you put into this for all of us."
"We love
you and continue to eagerly eat up every newsletter you
publish."
"You have much
patience to take the time to do all that you have done for us, and I just want
to thank you from the bottom of my heart. I have learned so
much about fibro and the different facets of
it."
"I can’t express to you how much you have helped me over the years with
your newsletters and e-mails when you find out anything that you think we should
know about. I look forward so much to seeing your name appear
in my e-mails."
"I am so
glad that I came across your web site and subscribed to your
newsletter. It is very helpful."
"You
are the only one whose newsletter I truly look forward to
receiving. I get a lot, and I belong to various support groups for CFS and
Fibro, but yours is undoubtedly the Best one that I've ever read, and in each
one I learn so much new stuff about Fibro, and I am so heartened by
it."
"Thanks for all
the help you have given me and many, many suffering
people."
2.
WOMEN'S PAIN IS DIFFERENT THAN MEN'S
Article sent in by a
reader--
3.
LYRICA COMMENTS
Reader
1--
"Lyrica is the same
as Neurontin but processed by a different drug company. I've
taken Neurontin for many years (5) and it works for me when the generic
didn't. Not about to change to Lyrica just because that company is pushing
doctors to do so...not when what I've got does work."
Reader
2--
"In regards to Lyrica being approved for
fibromyalgia, it was the first drug
I was prescribed. For me, I have
terrible aches in the palms of my hands
which are also red and
blotchy. They feel inflamed although my
Rheumatologist said my blood
tests were fine and it was just FM. Long
story short, once the Lyrica
built up in my system, the side effects of
"swelling of the hands and feet"
made the drug worse than the condition
itself, so I stopped using it and
went to Neurontin which helps much more
with the achy
palms."
Reader
3--
"My anesthesiologist,
whom I was seeing for pain management, gave me a month’s worth of samples of
Lyrica to try. In addition to having fibromyalgia, I also suffer from diabetic
neuropathy in my right thigh. From what I’ve read, most people who do respond to
it respond very quickly - within a few days they feel relief. Me? I felt no such
thing. In fact, I felt absolutely no different than if I had never
taking the medication to begin with. After explaining that to the
anesthesiologist, he stated that if I hadn’t felt any type of change within the
first couple of weeks that I would probably never respond to it. He used it
himself for lower back pain and a type of sciatica and got complete relief
within a few days so at least he knew its effects. I was
disappointed in it because like everyone else, I was looking
for a miracle drug."
Reader
5--
"I use a very small amount of Lyrica
for nerve pain—just 50 mg. at night rather than the usual three times a day.
At the same time, my fibro pain and my arthritis pain have
definitely diminished. I
stopped the Lyrica a few days ago as an experiment and find I’m still doing
fine. But—there’s always a caveat—is it the Lyrica or
is it that cold weather does me in and it’s very warm
now?"
4.
DIVINE HEALING
A newsletter reader
wrote who had been healed of a condition related to fibro. That made
me recall an amazing healing I experienced 13 years ago. I had
suffered since my teens with painful endometriosis. At age 34 I had a
complete hysterectomy to try to get rid of this problem, as I was having only
one good day each month. The other 29 days were agonizing and
miserable.
Unfortunately, after
the surgery, residual endometriosis attached itself to my intestines and was
inoperable. The awful pain was back 6 days a month and nothing could help
it. The
doctor said this happens in 1% of cases of women who undergo surgery for
endometriosis (guess I was just lucky....) Another specialist wanted me to
take male hormones, but there were some side effects I just couldn't risk,
and no guarantee it would fix the problem. I was at my wit's end.
One Sunday I visited a
small church in a poor section of our town. God used a dear little lady in
that church to pray for me at the altar at the end of the service. She did
not know who I was or even that I was sick. I did not have any faith,
but thought it was very sweet of her. Amazingly, God healed me less than 1 hour after
she prayed. The pain left and never returned.
I thought this
lady must have been an angel. I later found out she worked at
WalMart! I
don't know why God sovereignly steps in at times in a miraculous way--but not
all the time. This is one of the great mysteries. When people asked Jesus
why a boy had been born blind, he said it was so that the glory of God could be
revealed. Our illnesses and afflictions are probably serving a bigger
purpose than we know of.
Interestingly, while
thinking upon this subject, I received this from reader with
FMS--
"I started writing
poetry when God healed me of non-hodgkins lymphoma, I was
terminal and had been given two to three years to live at that time, it has
been over twenty years ago and I am still testifying of my beautiful
miracle."
5.
LUNESTA & BAD TASTE IN MOUTH
From a
reader--
"I checked the side effects listing and one
of them is a bad taste in the mouth. My thought is that since Lunesta is
processed through the liver and there is a warning on it for
people with liver problems, possibly the people taking it who get the unpleasant
taste may be having some kind of cross effects with the liver. This
is one of the few medications that I haven't gotten any of the possible side
effects with. The one warning I did take note of is that it can cause
withdrawals symptoms if taken for 1-2 weeks straight. My doctor told
me it takes like 24-48 hours to process all of the drug out of your
system. I know when I first took it, I'd still be sleeping well
from the Lunesta that many days after I'd stopped it. Again, that's a
liver effect...it takes that long for the liver to process it out of the
body. Which takes me back to the bad taste....could be a
link."
[I've been using
Lunesta for a month or two and it works quite well for me. I had to stop
taking Ambien after 10 years because of short term memory loss and night eating
binges. For a complete list of things I've tried for sleep since 1982, see
www.fms-help.com/sleep.htm.
There is no one thing that seems to help every single insomniac - drugs work
differently for each of us. It sure is great when you find something that
works and doesn't give you a hangover. Having a broken sleep clock is no
fun! My insomnia story is at www.fms-help.com/insomnia.htm.]
6.
POEMS ABOUT FIBRO
You can find some
really good poems about life with FMS/CFIDS/ME at www.fms-help.com/poems.htm.
These have been submitted by newsletter readers over the
years.
7. WHY SUFFERING?
From a
reader--
"I
noticed that those of us with fibro almost always have our health complicated by
multiple problems, usually painful ones. For instance, in addition to Fibro I
also have problems with Complicated Migraine Syndrome and Spinal Stenosis, as
well as having four slipped disks, and other annoying
things. I wonder why that
is? More importantly than
that, what can I learn from it, or how can I develop my character
through this suffering so that I am more pleasing to
God?"
[My heart resonates with this reader's
thoughts. There could be a greater purpose in suffering than
we realize.]
8.
CHEMICAL INJURY
From a
reader--
"I don't have FM but was on the verge 20 yrs
ago as my chemical injuries were untreated and my symptoms were
increasing. I understand the struggle of visiting drs for years and
they now knowing what to do. I
have been seeing one of the top drs in the nation who is doing research for FM
CFS and MCS. Dr Grace Ziem had worked for 30 yrs in
researching. She is in her mid 60 and all her life has basically done this
research. She had found some solutions and using a biochemistry professor
to affirm and pull it all together in writing. Her web page is
www.chemicalinjury.net. I
have seen her for six years and am using the glutathione nebulized and
nasal form. It works along with the balance of folate and
b12. Many people took the b12 and folate but never had the
glutathione nebulized to work with it so never got results. We
who are using it are amazed how it reduces or reactions as it heals. She is
an MD not a pathic dr. So the tests she uses are sound scientific by very highly
reputable labs. She will gladly consult with your local GP's who wish to
read her pages and go along with using this protocol with
you."
9. 19-YEAR-OLD MALE MUSICIAN DEVELOPS
CFIDS
I was alerted to this article by a
reader. What a story! This young man can write extremely well!
Check out his incredibly expressive article about being diagnosed with CFIDS at
the age of 19 and what his life has been like for the past 4 years.
Also,
here is a comment about this article that I received from another
reader:
"Wow!
I am reading this with tears pouring down my face! The young man writes
so beautifully and his situation and symptoms remind me so much of what
my daughter went through. (However, she had so many warning signs that were
overlooked by her doctor before the final crash). I am going to forward this on to my daughter. I am sure it will hit
home with her!"
10. METHADONE
"I continue to take 5mg.
methadone 3xday (since Jan.07) & can't believe how much better my
life is. The 1st 2 mos. I really overdid because I had so little
pain & paid dearly for it Mar, Apr. But I stuck with the
methadone only taking vicodin (it didn't really help much) when pain was
intolerable. Delighted to say it paid off. After 10 yrs.of
pain my muscles just weren't up to the new challenges I demanded of
them. I am no longer taking vicodin, elavil, etc. or anything
else except vitamins & supps as before & the greatest pay off is how
clear I am mentally!!!! No more fog & indifference! My
pain range has gone from 8/9 to 2/3 and I'll take that any day!!
I know several people jumped in after you
printed my comments about the benefits of methadone & I would like to hear
from those that were "pro", not con. I am amazed & would love to hear
others comments. I felt like I was "coming out of the closet" at the time
& will admit that there is one hell of a stigma the
uninformed have attached to this drug that alleviates your pain while
giving you back your mind! I have some funny stories about
pharmacists & other drs. at my health plan--their reactions to my being on
methadone. Thank God for my doctor who set them straight when I told her
their comments! Glad I can still laugh! My dr. was really at a loss
as to what to do with me since I am apparently opoid intolerant. I have
talked to others online who take oxycontin and that was the last thing I wanted
to take & in fact my dr. said she would refuse to prescribe anyway.
The nausea I had to tolerate just to take six 5/500 of vicodin a day was
awful."
11.
FIBROMYALGIA SUPPORT GROUP
From a support group leader--
12.
CYMBALTA
From a reader--
"I've recently
started taking Cymbalta...and it has made a great difference with the
fibro-fog...I'm even thinking of driving again...my
concentration & fatigue were so bad that I was
terrifed to get behind the wheel. I also noticed I'm able to accomplish
more housework as far as organizing things and doing them in
order...Cymbalta is supposed to help with pain...not sure about that
..because I got my steroid shot at the same time I started on Cymbalta....anyone
else have any say about Cymbalta?"
[Write dombush@bellsouth.net. You can
also read more comments about Cymbalta that are posted on my site and
newsletters by using the Google search box at the end of this
page.]
13.
BOOK: "I'D RATHER BE WORKING"
A book suggested by a reader on a subject many of us
can relate to!--
[This book by Gayle Beckstrom, a
fibromyalgia sufferer, looks great! Has anyone read this?
Would love to hear some comments! Write dombush@bellsouth.net.]
14.
FLU SHOT?
From a male reader--
"Having FMS, I can always remember being
easily tired. But in the past 5 years it seems much worse. I think
it can be traced back to Dec. 2002, when I got a flu shot and a pneumonia
shot. I think that that was a big mistake. Seems like I recall that
these shots can make a miss with your immune system. Too bad it's so hard
to put your immune system back."
15.
LOW DOSE NALTREXONE
From a reader--
"After receiving a few emails from fellow
team members, I’ve discovered that I may one of only a few people that have had
incredible luck with low-dose naltrexone for the treatment of
fibromyalgia. I had absolutely no side effects and was
able to get off of ALL of my medication to where I am now only taking that one
pill at night now. Just goes to prove (again) how unique and
special we all are."
16. SICK FLARE?
From a male reader--
"Do flares have to just be muscle
pain? I recall several times I went out with friends, another time I spent
a weekend at a friend's house during Superbowl weekend 2004, and just last year
in late June when my family and I went to a waterpark for several days, and
within a day or two after doing these things, I got either a really bad
flu, and the worst nausea and diarrhea after the water park. Are
these flares? Just last week, I had a cough and could not figure it
out. A friend tohught it was allergies."
[For me, a fibro flare (FMS began in 1982 www.fms-help.com/fibro.htm) always
involved pain, stiffness and worsened sleep. But with CFIDS (began in 1987
www.fms-help.com/fatigue.htm), I
noticed a viral illness that would begin after too much activity. An
example: I went to a Valentines Banquet at church with a few hundred
people. The lady beside me had a cold. She was well in a week.
I was sick for the next 6 months - it went into bronchitis, then pleurisy.
The most recent example of this was after attending a riverside wedding
in the early evening. A damp warm breeze was blowing. The bride
and bridesmaids all wore strapless gowns and were not chilled at all.
I was sick for a week. Was it something I caught from other wedding
guests, or was it exposure to the elements? (Nobody better send me to
Siberia! HA!) Comments? Write dombush@bellsouth.net.]
17.
PROBIOTICS
From a reader--
"Usually people who
suffer from what we suffer from doctors love to glut you with
antibiotics. That lowers the natural bacteria in your intestines.
Dan Active is good or any yogurt helps
as well."
[This reader is absolutely
right! I almost always have to take acidophilus to avoid yeast
infections. What I really appreciate about the new "rocket fuel" powder
I'm using is that it contains vitamins, minerals, fiber and PROBIOTICS all in
one. It cleanses, nourishes and builds up good bacteria all at the same
time. For info, write dombush@bellsouth.net. I'm feeling great!]
18.
RADIO SHOWS
From Marly Silverman--
"Here are radio shows that PANDORA is coordinating with Dr.
Albert Robbins--
19. ALKALIZING
From a reader--
"I have been reading alot about
balancing your PH in the body. Since I have been
doing what I read...I am better. You take 2 tb. of Apple Cider Vinegar (any
brand) and one fourth to one half teaspoon of baking soda (Arm and
Hammer). Mix it together (it will bubble) with a half glass of water and
drink it at least two-three times a day...try to do it on a empty stomach. This
helps balance your PH...and the vinegar gives you energy and helps with
pain. It is said that if your body is alkaline...that disease cannot get
started. I have been reading the book "Alkaline or Die"...but found
this information above online."
[I try to use an alkalizing
powder every night before bedtime to keep from becoming too acidic. Acid
causes pain and disease. When I become too acidic, I get
an overactive bladder problem--and who needs that?! The alkalizing
powder I use was also helpful in getting rid of another miserable problem I had
awhile back, so I'm sold on this stuff! If you want info, write me at
dombush@bellsouth.net.]
20. ATIVAN FOR PANIC DISORDER
I had agoraphobia (fear of open
spaces) from age 14 to 34. I know that a lot of people with FMS struggle
with panic disorder too. I sometimes take Ativan (Lorazepam) for help with
sleep. Just got this interesting link from Revolution Health, a
really great new site--
21.
DOCS CAN'T FIND ANYTHING WRONG
I think we can all relate to this
reader's experience--
"I am trying to get as much info about Fibromyalgia and CFS as possible to
help myself. I am tired of going to doctors who will not help me… they
can't seem to find “anything” really wrong with me… lab tests all look
great…etc. I am 43 years old and my health / condition of life started
changing at 41… I want my life back!!
22. BRAIN VIRUS?
Link from a reader--
Could a brain virus be causing
CFIDS?? Here's a quote from this site:
"HHV-6 is an infection that can persist in the
brain tissue long after the primary infection and after evidence of the virus
has long disappeared from the plasma in the circulating blood. Therefore,
direct evidence of chronic infection is not easily attainable by standard
laboratory tests, even though it has long been suspected as playing a role in
chronic fatigue syndrome (CFS), in conjunction with Epstein Barr Virus (EBV) the
virus that causes mononucleosis."
Thearticle sent in by the newsletter reader
was about a study being done at Stanford University in California:
"A Randomized, Placebo-Controlled and
Double Blind Study."
23. NOT MILK
From a reader--
"I’m a fellow PWC. It’s so nice to see someone else knows how
horrible milk is (for your body, environment, and cruelty to animals). You
mention Rice Dream, but have you tried Almond Breeze? Almonds are so good for
us, yet who wants to eat all that fat? The Blue Diamond Almond milk comes in an
unsweet version that’s fantastic."
[For more info, see www.notmilk.com. A lot of people feel better when they don't drink milk -
for instance, allergies, constipation, hormonal fluctuations go
away.]
24. DOM'S UPDATE
I'm still
feeling GREAT!!! I started taking two products on June 5 and noticed a
change for the better in just a couple of days. I have
no more fatigue or
brain fog! Yep. Gone! I have been living like
a "semi-dead" person for the past 2-1/2 years, as most of my readers know who
have been following my miserable saga of suffering.
I am just
so
grateful to feel like the real
me again!
Although I haven't
pushed the envelope yet with travel or anything really stressful, I have noticed
some unusual abilities now - like being able to go to the mall and be out all
day with my husband (whose favorite hobby is window shopping). I
am thinking straight again and have plenty of energy. The sky seems
bluer, the grass looks greener and the mall sights and sounds don't drive
me crazy like they used to. We even ate in the food court - a place that I
would avoid because of all the noise and commotion. Too much stimuli would
make my brain feel like it was ready to explode! But now it's lots of fun
and the noises didn't bother me. I had a really good
time!
When I was
suffering with fatigue and fog, I couldn't make my thoughts go in any particular
order. This made performing simple tasks very difficult, such as getting
dressed or making dinner. There were too many mind-boggling steps to
accomplish. I felt overwhelmed by the details. Even making a
simple salad with just 3 ingredients was a Herculean task...which is hard
to believe for someone who was an honors graduate of UCLA and held
responsible jobs for years! (See "Yuppie Flu - Drained by the Brain" www.fms-help.com/yuppie.htm and
"Brain Functioning in Reverse" www.fms-help.com/brain.htm.)
I was close to mental and physical collapse most
days. From the
minute I got up (assuming I could do that), I would have to conserve my two
cents worth of energy and hoard it like a miser. In the shower I would
wash my hair as slowly as possible in order to have strength to later step out
of the tub. (Now that's an energy
crisis!) Resting
did not help. I would sniff essential oils to recover myself, but the
condition always returned, and I would have to take another "hit" to
function again for a little while. I was grateful for even a
temporary respite from my suffering.
But since June 5 when I began taking the products recommended by my
husband, I have had energy by the boatloads! I was even
jumping around happily the other day to show my husband how much better I
felt. He became immediately alarmed and cautioned me gravely to not burn
up my energy so fast! Poor man!!! He has had to live with a
devastated wreck for so many years. But I feel great now...I can
think straight again and life is good!!
If you
want info on what I'm using, please write me at dombush@bellsouth.net for
names of products and the link to my store. I don't know if they will
help others or not. They don't claim to cure any disease, but there
are some very sound reasons as to why they are helping me. I'm
not a doctor, but I think it has to do with getting oxygen
to my (formerly exhausted) brain and also detoxifying
my system. There's a 30 day
money back guarantee, which is great for all of us who have had
"cash-ectomies."
Unfortunately, last month I spent $1,000 for out of pocket
medical costs (read: "credit card debt") for doctors visits, lab tests,
etc., only to be told that there is nothing is
wrong with me! Now
that's really strange, because I have felt like a dying
person for the past 2-1/2 years! I suppose that compared to finding out
one has cancer, this is good news, and for that
I am
grateful. It's also a good idea to rule out any "detectable"
illnesses, such as heart problems, which is what the doctor thought I
had.
Right
after I spent all this "plastic money" on non-productive medical help, our
church choir (Wednesday night) and the deacons of our church
(Sunday night) laid hands on me and prayed for my health situation. It was
not long after this when my husband suggested I try these products--and
they have brought me back to feeling normal. I just want
to THANK GOD for answering these
prayers!!!
My only remaining problem
(besides the sleep disorder which I've had for 40 years and manage
with sleep meds www.fms-help.com/sleep.htm) is the
chest tightness, cough and breathing problem that developed when I worked
in toxic mold in 2005. However, there may even be hope for
this! The company that makes these two products that help me
also makes a lung formula. I also plan to try
their anti-stress formula, because a newsletter reader with
fibro said this helps her wind down after a stressful day.
This all
sounds good and promising, so I will continue to
serve as a "guinea pig" in the name of science!
Til next
time,
Dominie Soo
Bush
Acne
Treatment
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Sore Treatment
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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE
DISCLAIMER: I am not a medical doctor. I
am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website
is not to diagnose or cure any disease or malady, but is presented as food for
thought. This information cannot take the place of professional medical
advice. Any attempt to diagnose and treat an illness should come under the
direction of a physician. No guarantees are made regarding any of the
information in this website.