DOM'S
NEWSLETTER
for people with
FMS/CFIDS
JAN. 29, 2007
Wow!....So much great
reading in this issue! You will notice some reader's email addresses in
various topics below -- these team members requested feedback, so you can
write them directly. My own comments
are in teal.
On a personal note,
we backed out of the condo deal. The
response from the fibro team was 90% opposed, due to the risk of noise and
rising HOA fees (all of which would be out of our control). Thanks for
your warm-hearted counsel and also for caring about my fragile nervous
system. I really believe we are wiser in numbers than we are
individually. Our fibro team
is the greatest!!!! (Rah-rah!) - Dominie :)
1. NIP IT IN THE
BUD
From
a reader--
"It
seems i have been controlling my back and neck muscle tightening (and
thusly the pain) with Klonopin which is an anti-anxiety
and panic attack medicine. i use a small dosage when i sense any type of
anxious event occurring (nipping it in the bud) ...its terribly in-expensive
ironically."
2. CHEAPER
PRESCRIPTIONS
From a reader--
"My home business has to do with health
discounts. They're not insurance but discounts for medical procedures,
dr's visits etc., dental, vision, chiropractic, and prescription. I get
the dental, vision, prescription, and chiropractic card free because I'm in the
business. I had my dad (a doctor) prescribe the pill for yeast
infections. I got it because of the antibiotics I'm on. Anyway these
pills cost about $20 for each pill!! My dad prescribed about 6 pills for
me, so that I have them when I need them. So the total comes out to
$119.79...ouch!! Anyway I used my discount card and the total came
to $8.73!!! A savings of $111.06!!!! I wanted to share that with everyone that has a hard time
getting insurance to cover them because of our pre-existing
conditions. You can use the dental and medical discount cards as
many times as you'd like. No limits. Also it doesn't matter if you
have a pre-existing condition because it is NOT insurance but just strictly a
discount on procedures and meds..etc. I don't want
to sound like I'm soliciting here. I just believe in this product because
I know how much it helps me!!! People can also get the
prescription card free for a year!!! They need to go to my
website www.deliveringonthepromise.com/40370915 They watch the video and then can sign up for the free prescription
card. Just have people email me first gkirilova@hotmail.com
and then I can make sure that they have providers in their area."
3.
PAIN IN
LEGS
"I have for the past week
been having severe pain from my hips down
through my knees, nothing I take seems to do any good, I went to pick
up my little granddaughter on Thursday and when I got
home it was all I could do to hardly straighten out and stand up, it was a two
hour drive. I was wondering if there was or is anyone out there who has similiar
pain and what they are doing for it. I so would appreciate some
information."
4. LYRICA
(revisited)
From a reader--
"I've been taking
Lyrica since the beginning of December. I have
gained 10 pounds and I am calling the Dr. tomorrow to discuss
stopping it. I'm only taking 75 mg. twice a day, which is not anywhere
near the therapeutic dose. I think it is helping with the pain but I'm
going to stop it before I get dependent on it. I've been doing Weight
Watchers since January of 2005 and had lost close to 50 pounds with 20 more to
go. 30 more now. I originally gained all this weight on high
doses of Paxil, which I did need at the time for severe
depression. I never had a weight problem before (I'm 50 years
old) and literally had learn how to lose weight."
[To see other comments
about Lyrica on my site and in my newsletters, use the Google search box at
the bottom of this page.]
5. DOES FIBRO
GET WORSE?
"RE: VARYING
DEGREES OF FIBROMYALGIA in your newsletter www.fms-help.com/012307.htm, I
thought I would ask your readers if any of them had seen an increase in
symptoms, (gradual or bit by bit). I have worked since I was 17
years old in mainly 4 professions. So I have not had a lot of jobs. I worked in
a hospital, nursing home, a day program/supported employment training for
individuals with developmental disabilities both children and adults and now for
12 years I have worked in a non-profit organization, on the phone, helping
people with material problems thay are having. Sometimes they just need a
listening ear. I am fortunate to have a headset that I can get up and move
around but some days that does not make any difference. I take a lot of
time off, am fortunate to be able to do that because I have worked 22 in
non-profit so my vacation time is counted and my time off is adjusted to
that. However it does not make it easier to get the time off especially
when the ED does not understand the disability. I feel like if I quite and
go on disability, which means a year without income, I first
will lose everything and also the disease has won. I have been called a
very stubborn person and I do not take losing very well. Back to the
degrees of fibro..... is there any documentation showing
that this can happen? I would love to hear from some of your
readers."
[See my disability page at
www.fms-help.com/disability.htm - I
have not had to file, but many readers have - this page has their advice on
getting SSD for fibro.]
Another reader
writes--
"Your newsletters sustained me through the
nine-year process that finally resulted in a fully
favorable ruling in my SSA Disability case. You offer lots of
valuable information and inspiration to people affected by
these conditions who feel lost and alone."
6. ANKYLOSING
SPONDYLITIS OR FMS?
Question from a
reader--
"Do you know of anyone who was
diagnosed with FMS when actually they had ankylosing spondylitis or was
diagnosed with ankylosing spondylitis but actually had FMS? In my 20s I
was told I had ankylosing spondylitis but then later told it was a
mis-diagnosed. Lately--20 years later--I am told I have FMS, but the
specialist now thinks it may be ankylosing spondylitis."
7. CONNED ABOUT
CHOLESTEROL?
8. VITAMIN D3
& FIBRO
From a reader--
"I read the reader's comments about Vit
D3. It's funny that she mentioned it. I was just tested for it and
mine was very low. I am now on 5,000 mg per day. Yes 3
zeros."
9. INFECTIONS,
HORMONE IMBALANCES & HYPOTHYROIDISM
From same reader--
"I am also now on
doxycycline. An antibiotic, as part of a CFS recovery
program outlined in www.roadback.org I
typed in chronic fatigue or fibromyalgia and came up with a bunch of info.
I just read this: 'Antibodies to
Chlamydia pneumoniae have been found in 78.3% of FM patients
tested or 67.4% for unselected rheumatic patients.' I was just tested for Chlamydia pneumoniae and it came out
positive!!! That is why I'm on antibiotics now.
Here's an interesting statement the Dr makes
(which I think all of us know already from our own experiences): 'I have yet to see a patient with rheumatoid arthritis or
scleroderma (or other autoimmune disorders) who has normal hormone
levels.' I'm also on high levels of
thyroid medication (120 mg). Luckily my Dr is great and allows me to be on
it because I have all the symptoms but still test negative for it.
This leads to another statement he makes about
hypothyroidism and its connection to chronic illness: 'Chronic illness often affects numerous endocrine glands, including
the thyroid, adrenals, ovaries, hypothalmus, pituitary, testes and others.
The most common endocrine gland to malfunction is the thyroid gland,
manifesting as hypothyroidism (an under-active thyroid). I
believe hypothyroidism is the most under-diagnosed condition in a majority of
patients with chronic disease. In
my clinical experience, those with autoimmune disorders such as rheumatoid
arthritis or scleroderma consistently have signs and symptoms of
hypothyroidism.' That explains a few
things about all of us doesn't it? Another thing
that I read struck me...I thought oh this is sooo ME!!! This is what it
said: 'I have observed that another adrenal
hormone, DHEA, is often suboptimally produced in those with autoimmune
disorders such as rheumatoid arthritis, scleroderma and others. Adequate DHEA
levels are important for tissue repair and the proper functioning of immune
system cells.' Lo and behold, I have been
tested for DHEA and my levels are extremely low and am now on 25mg per
day.
Previously I would sway from hypothyroidism to
chronic fatigue...back and forth not knowing which I
had. Now I know that it is possible to have
hypothyroidism probably due to the chronic infection!
This site has given me hope. I have spoken of this
man before...this pharmacist that told me about him
treating his own fibro by taking low doses of
minocycline for a year. That was about 30 years ago now
and he's over it like a bad cold. He referred me to this site.
I'm going to take the multilevel approach with my
healing like we all are whether we like it or not I guess. I'm going to
deal with the Chlamydia infections and also deal with my
hormonal imbalances at the same time. Here is where I found the list of tests they recommend people
have done: http://www.immed.org/illness/clinical_testing.html. If it doesn't come up then go to www.immed.org and click on clinical
testing. I hope this helps someone out there."
10.
ALPHA-STIM
From a reader--
"I thought you might be interested in this
product. I use it daily and I think it works to help me with my insomnia. I am
not longer taking Ambien after 6 months of use. It's used in treating
pain, depression, bi-polar disorder, and
insomnia and it's drug free. http://alpha-stim.com"
11. SWOLLEN
JAW
"My
daughter for the past 2 weeks has had a swollen jaw, terrible
pain, been to doctor, dentist, emergency room, and still no answer. The
dentist took e-xays and nothing shows, yet they put her on antibiotics, all
kinds of pain meds and still no help. Today she is going to a specialist but
knows he isn't going to find the problem. Any info would be appreciated.
She is on disability for fibro and has been for over 2 years
and is only 42 years old. They just keep sending her from doc
to doc. I am wondering if her jaw is out of line, she clinches her teeth, as I
do. SO any info would be appreciated."
12. GOOD REMINDER
From a
reader (who is living in extremely meager circumstances)--
"Everyday, it is hard, as it is for nearly all who are ill and losing
income, yet, I have learned so many times, to REMEMBER that
the
ALTERNATIVES, of being a quadriplegic or
homeless or
in the midst of a war, just
bring me back to thankfulness and
appreciation for all I
have."
13.
CRACKED POTS
From
a reader (who describes herself as a cracked pot)--
An elderly
Chinese woman had two large pots, each hung on the ends of a
pole which she
carried across her neck.
One of the pots had a crack in it while the other
pot was perfect and always delivered a full portion of water.
At the
end of the long walks from the stream to the house, the cracked
pot
arrived only half full.
For a full two years this went on daily, with the
woman bringing home only one and a half pots of water.
Of course , the
perfect pot was proud of its accomplishments.
But the poor cracked pot was
ashamed of its own imperfection, and miserable that it could only do half
of what it had been made to do.
After two years of what it perceived to be
bitter failure, it spoke to the woman one day by the stream "I am
ashamed of myself, because this crack in my side causes water to leak out
all the way back to your house."
The old woman smiled, "Did you notice that
there are flowers on your side of the path, but not on the other pot's
side?"
"That's because I have always known about your flaw, so I
planted flower seeds on your side of the path, and every day while
we walk back, you
water them."
"For two years I have
been able to pick these beautiful flowers to decorate the
table.
Without you being just the way you are, there would not be this
beauty to grace the house."
Each of us has our own unique flaw. But it's the
cracks and flaws we each have that make our lives together so very
interesting and rewarding.
[Another reader wrote this week and
said, "I've come to the point where I've submitted myself to God's will
even if that means being sick." There are reasons for everything that
happens in our lives, especially for those who loves God - Romans 8: 28,
29]
14. LYMPHATIC SYSTEM
AND FMS/CFIDS
From a reader--
"My wife
found this info from a Dr. Mark Shaw about the cause of CFS
(which he himself had)."
Here's a short quote--
"In
the vast majority of Fibromyalgia and Chronic Fatigue patients presenting, their body has been under a
lot of stress for a long time. Human beings are very resilient organisms, but like all organisms
exposed to excessive stress and
tension over an elongated period there comes a breaking point. At some point you were exposed to a viral/
chemical/ bacterial attack. Many Fibromyalgia and CFS “experts” have focused their research
purely on the exact type or species
of virus or bacteria or spirochete or chemical that is implicated at the initial point of exposure. And indeed
normal attacks by these elements
vary widely in the degree of damage and illness they can cause. But, and this is significant, in pure cases of Fibromyalgia and Chronic
Fatigue Syndrome, the etiology of
the post exposure illness always has a distinctive set of measurable symptoms which differentiate it entirely
from the initial “trigger”
infection. In other words the
“trigger” for your illness is now largely irrelevant. The major part of your Autonomic Nervous
System is centered around the brain and spinal cord. It consists of two parts. The Sympathetic
and Parasympathetic nervous systems. These are often known more
amicably as the “day nerve” and the “night nerve” respectively. The nerve
ganglia that control these systems
are centered around the middle area of your back, between Thoracic 2 and Lumbar 2 (for ease of reference I
will call it T7). It is the area of the spine between the lower ends of your
shoulder blades, the scapula." Read more at Dr. Shaw's website at www.beatfibroandfatigue.com.
[Dr.
Mark Shaw's approach to FMS/CFIDS is really unique. I think he is on
to something that might help us. See my page about the autonomic nervous
system and it's relationship to fibro at www.fms-help.com/autonomic.htm. If anyone has tried Dr. Shaw's techniques,
I would love to hear from you. Please write me at dombush@bellsouth.net.]
15. READER
WITH SEVERE CFIDS
From a reader--
"Four years ago I
could climb stairs, too. Now I can't even drive and
get sick lying
back in the car seat to get to my doctors, which, is
the only place I've
gone in over 3 yrs. I have severe chronic fatigue
with all the
CDC symptoms. I go from the bed to the couch and have to
have
help getting dressed, getting a bed bath, getting my food, and
sitting up
with my feet out on the couch to eat. As the
devastating
exaustion has gotten worse so have my all my
"sensitivities".
I would like to find someone
that has CFS as severe as I do to talk
to on the phone with. It takes
me so long to type (3 hrs to type
this) that email is out. If
you know of anyone would you give
them my email, please? Thanks, for
your help." - Marcella mdlchapel@bresnan.net
16.
LIMITATIONS
Got this great advice from a
long-time reader--
"Regarding limitations, they aren't so bad.
Think of it as opportunities to smell the flowers, instead of
always tending the garden."
[When I was
growing up, my mother would often ask me this question, "What have you
accomplished today?" It's a great question and helps to keep you from
wasting your life, but later when illness hindrered me from achieving and
accomplishing, pondering this question would make me depressed. I just
love the words of an old hymn, "In the Garden," about the sweetness of
fellowship with God. The words go like this: "I come to the garden
alone, while the dew is still on the roses. And the voice I hear falling on my
ear, the Son of God discloses. And he walks with me and he talks with me,
and he tells me I am his own. And the joy we share as we tarry
there....none other has ever known!" -- I need to walk in the garden
more with him and quit trying to prune all those roses! Rest is okay,
especially resting in the Lord!]
17.
LACTONEX
From a reader--
"I wanted to share Lactonex (basically a high dose of
Acidophillus)...I'm not sure if the spelling is correct.
However even if you're on antibiotics, this will keep your
digestive system working. The pharmacist I talk to...who
had fibro...recommended this to me. You take the whole bottle and it'll
balance your intestinal flora and prevent yeast infections. Who knows it
might even help for IBS. I don't know. I'm picking it up at the
pharmacy today. If they don't carry it you have to have them order it in
for you. Say said it only cost 7 or 8 bucks or so."
18.
ELEPHANTS
I was talking to a friend recently
who has gone through many years of severe trials with an ailing husband. I
said,"I don't know how you made it through so many years with this difficult
situation." She replied, "You know how you eat an elephant, don't
you?" I said, "No. How??" And she said, "One bite
at a time." Loved it! Thank God we can't see the
future. "Life by the yard is hard. Life by the inch is a
cinch."
19. DR.
GORDON
From a reader--
"This doc has a lot of good info on his
site. On the left side click on the Fibromyalgia and learn about
"hypercoagulative state."
Nattokinase is the enzyme best for
dissolving fibrin. Jarrow and Doctor's best make good
Nattokinase. This doctor also operates
this link where I have seen the best EDTA and chelating products for
detoxifying heavy metals. Chelation is his
specialty. But you will find a lot of well researched info under Q & A, on
the left side, close to the bottom. This
link is for his institute: (there is short video of him on home
page) http://www.gordonresearch.com."
20. MICROWAVE KILLS GERMS IN
SPONGES
From a reader--
[This article says that microwaving kitchen
sponges for 2 minutes kills bacteria. Be sure the sponges are wet.
The reader who sent this article also microwaves
toothbrushes.]
21.
SEAWEED
From a reader--
"
I have known for year that the
brown seeweeds ( and to some extend red sea weeds) have the most miraculous
healing properties.
There are several places on the net you can
get this product for $26 and free shipping. A reliable source I have dealt
with is www.aliveand aware.net (also known as www.aliveandaaware.com). The above site describes how the
Alginate present in this product removes heavy metal
toxins (like Cholestyramine does)."
22. GAMMA
GLOBULIN
From a reader--
"Gamma Globulin is a protein like substance
and is a normal part of our body. We can increase or decrease as
follows: Allergies, infections, heavy metals increase it. If we are
low on it, Colostrums and Whey protein provides plenty of it. Most Whey
protein will say on the label that it contains so much IgG. It appears from this reading that it is good to have
plenty of Gamma Globulin (IgG) in our system to fight the "bad guys", but we
also should be ready to face some discomforts (Inflammation, allergies and
such) when they do. The controlling mechanism is supposed to be
our Hypothalamus gland , which is somewhat damaged or out of tune in our case so
we under or over react to invaders. Gamma Globulin is also
known as Immunoglobulin G or IgG."
[Interesting...I used to be given gamma globulin shots as a child
because I was sick all the time--mostly upper respiratory
infections.]
23. PACING &
SWITCHING
From a
reader--
[This is a practical article about how to manage FMS/CFIDS on
a daily basis. I should heed this advice. It's about pacing yourself
throughout the day so you don't use up all your energy, and also switching
activities frequently so you are not sitting in one position all the time, or
doing only mental exertion without a break. The reader who sent it said
that she, for some reason, has not had any trouble pacing her
housework....ha!]
24.
CANNABIS
From a reader--
"I CANNOT
sleep. I’ve done it ALL. I’ve joked for a few years about my last
resort being cannabis. I might be there. Never tried it. Am all
about following the rules. A doctor NOT a street corner (although it’d be a lot
easier I’d imagine). Any words of wisdom?"
25.
GRATITUDE
This was in the Our Daily Bread devotional booklet last
week - I have occasionally felt like the jogger in this story, as we probably
all have at some point in our lives!
A story is told about a vendor who
sold bagels for 50 cents each at a street corner food stand. A jogger ran past
and threw a couple of quarters into the bucket but didn’t take a bagel. He did
the same thing every day for months. One day, as the jogger was passing by, the
vendor stopped him. The jogger asked, “You probably want to know why I always
put money in but never take a bagel, don’t you?” “No,” said the vendor.
“I just wanted to tell you that the bagels have gone up to 60
cents.”
26. WORK FROM HOME
(revisited)
From a reader--
"I just wanted to let
you know that I have received some responses for my question about three weeks
ago about working from home. I have met some new folks and they are great
and full of wonderful information. It really helps in these situations to
know that you are not alone. Your newsletter is so
helpful and full of the best
information."
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