DOM'S FMS/CFIDS
NEWSLETTER
May 1,
2009
A Christian-based
newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune
Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their
families.
14
TOPICS IN BLUE. READERS' COMMENTS IN
BLACK. MY COMMENTS IN TEAL.
DON'T MISS RED TOPICS!
1. READERS
WRITE
"I am crying as I have just discovered your
site www.fms-help.com after searching the web
for hours."
"I have read your story on your
website and I couldn?t help relating to much of what you went through?including
your story of the mold infected ducts www.fms-help.com/mold.htm at a prior
workplace!"
"I have been looking over your website
and have found a wealth of information. Thanks so much for all of your hard
work!!!"
2.
AMYGDALA RETRAINING
I have reported several
times on Ashok Gupta's amygdala retraining program in past newsletters
www.fms-help.com/newsletters.htm, but a reader just sent me this most
interesting article, where his theory is explained very
well--
Ashok Gupta Explains the Amygdala
Retraining Program for ME/CFS/FM and Associated Illnesses
Note that
predisposing factors (genetics) is the first step on his chart! Secondly,
acute stress. Thirdly, bacterial or viral influences. So
the bottom line could be genetic predisposition or even in utero
influences, because every person under acute stress or exposed to
viruses or unsanitary conditions (e.g., living in a war zone or
concentration camp) don't develop FMS/CFIDS. Something else is going on
that we don't fully understand as to why people develop this
condition. A list of occupations my readers had at the time their
FMS/CFIDS began is at www.fms-help.com/occupations.htm.
As you can see, we are a diverse group of people!
3. ELECTROPOLLUTION
From a reader--
"I
laughed when I read the desciption of the BIOPRO cell chip in your newsletter
www.fms-help.com/042309.htm. As an
licensed professional engineer who works in the field of telecommunications,
specifically RF (Radio Frequency) or wireless, I can assure you this device is
nothing but a placebo. Their own description is very, very careful to
never state that it will reduce the RF signal level exposure because that is
somwething that could be easily measured. They'd be in violation of
advertising laws.
If it
doesn't reduce your exposure to the phone's RF radiation, what does it do
then? In their own words, it helps you "deal with the cumulative
stress associated with living in today's electronic environment."
In other words, put this device on your phone and stop worrying about the
exposure you are still getting from the phone! Don't worry, be
happy! :-) That's called the placebo effect when it works on the
weak minded.
Of
course it could also possibly block all incoming and outgoing calls which
would also reduce a person's stress level, but there's already a device on the
phone for that....an ON-OFF switch. So I doubt it will do that.
If it
did reduce RF signal levels to any degree it would interfere with the
cell phones proper operation. You'd miss or drop calls more often.
If you're trying to call 911, this could cause MORE STRESS especially when
it doesn't work due to low RF signal levels.
Worry
does cause stress. Stress does cause increases in certain stress-related
illnesses. So as a placebo, I'm sure it sometimes works as
advertised. But it's simply snake
oil in a technological cover. There are much better, less expensive ways
to reduce our stress brought on by worrying about things we shouldn't.
Spending hard-earned money on fakery in this economy should cause us all more
stress!
My
free advice, "Don't worry, Be happy!"
4. HOT
FLASHES
Reader
1--
"What worked for my hot flashes was
DHEA. I started at 5 mg. at the recommendation of my ND. That
was when I was beginning to go thru menopause. Now, a few years
later, I need more, maybe 15 -25 mg. You just watch for symptoms of
facial hair, acne, etc. That means it is too much. But it has relieved hot
flashes and vaginal dryness for me."
Reader
2--
"Please tell your reader who's suffering from
hot flashes that low dose antidepressants can help. I was
taking Prozac and quite accidentally discovered for myself that I
had no night sweats, no hot flashes. At about the same time,
a British study confirmed that small doses of Paxil alleviated these
annoying symptoms associated with menopause. I came to the
conclusion that Prozac (because I can't tolerate Paxil) had the same effect
for me. Who ever thought there would be an upside to depression, chronic fatigue
and fibromyalgia? Well, this is it. If your reader is opposed to taking
antidepressants, then tell her to try soy supplements, available in any
supermarket, health food store or pharmacy."
5. MORE
MRSA IDEAS
Reader
1--
"I read in your newsletter about your friend
with MRSA and I want to tell you about an experience I just had that might be of
interest to your friend.
I recently fractured a rib, which was
incredibly painful. A week after it happened, I still could barely move,
even taking pain meds. My chiropractor called to ask me to come in for
something unrelated, and I told him I could not because of my rib. He said
he could provide me with some treatments that would speed the healing of my
rib.
I was suspicious of this, but willing to try
anything, so I hauled myself into his office. He gave me a laser
treatment, which consisted of pointing several laser beams at the location
of the fracture for a short period of time. Afterwards I was in as much
pain as when I came in, but he assured me that if I could come in every day and
get this treatment, I would notice a difference. So I did. I first
went in on a Monday, and by Friday I was moving with much less pain. The
following week I went on Monday, Wednesday, and Friday, and by the end of the
week I felt at least 75% better.
While I was getting one of the treatments,
the nurse told me the story of one of their patients who contracted MRSA and had
an open wound in her foot that would not heal and had been there a year.
They decided to try the laser. She had the treatment every day for two
months, and it healed the wound. I know that going to the doctor every day
for two months doesn't sound like fun, but I think I would choose doing that
over living with an 18' wound that won't heal.
When I read the story about your friend, I
did a fast search to see if I could find anything on the Internet about this,
and I did find the following:
Ultraviolet Light C in the Treatment
of Chronic Wounds with MRSA: A Case Study
VOLUME: 48,
Issue Number: 11
author: Thao P. Thai, BScPT, MSc;
Pamela E. Houghton, BScPT, PhD; David H. Keast, MD, CCFP; Karen E. Campbell, RN,
MScN, NP; and M. Gail Woodbury, BScPT, MSc, PhD
A worldwide development of virulent bacteria that are
resistant to multiple antimicrobial treatments is occurring.1 One strain of
antibiotic-resistant bacteria currently receiving attention is
methicillin-resistant Staphylococcus aureus (MRSA). In many hospitals in the
United States and Europe, the prevalence of MRSA has increased from less than 3%
in the early 1980s to rates as high as 40% in the 1990s.2-5 Since the first
report of MRSA in Canada in 1981, the number of MRSA cases has increased
dramatically, and cases of community-acquired MRSA also have been
documented.6-15 Methicillin-resistant S. aureus bacteria colonize the skin and
open wounds and may interfere with wound healing.16
Artificially produced
ultraviolet light (UVL) was introduced as a therapeutic treatment for skin
disorders at the beginning of the 20th century.17 Cell culture and animal
studies that have examined mechanisms by which UVL augments wound repair propose
that UVL can stimulate cell proliferation,18 epidermal thickness,19 blood flow
in the cutaneous capillaries,20 and wound debridement.21 A particular wavelength
of UVL of between 200 nm and 290 nm called ultraviolet light C (UVC) has been
shown to have bactericidal effects.22-26
Recent studies indicate that UVC can
kill antibiotic-resistant strains of bacteria such as MRSA in laboratory cells
and in animal tissue.24,26 However, whether UVC can kill these bacteria when
applied to human chronic wounds, using suggested clinical protocols, is not
known. The purpose of this case study was to evaluate the potential role of UVC
in reducing wound bioburden and improving wound status in chronic ulcers
infected with MRSA.
Method
UVC treatment protocol. Using an application
technique that has been previously described by Nussbaum et al,21 UVC was
applied at a distance of 1 inch and perpendicular to the wound using premeasured
disposable spacers. Before treatment, a 254-nm, cold quartz UVC generator,
approved for clinical use in Canada (supplied by Medfaxx Inc., Raleigh, NC) was
warmed for 5 minutes before being placed over the wound. The ulcer was cleansed
with sterile saline, a thick layer of petroleum jelly was applied to the
surrounding periulcer skin and any healthy granulation tissue, and the wound
edges were covered with a drape.
The UVC generator was applied to the wound
for 180 seconds per wound site. This length of time is recommended for the
treatment of infected ulcers21 and was selected based on the MRSA killing rates
reported in a previous in vitro study.24 To shield the eyes from UVC, the
therapist and patient wore protective goggles. All products applied to the
patient were sterilized or discarded after a single use. Equipment that had to
be reused was decontaminated using appropriate protocols.
Subject
recruitment. Approval for research involving human subjects was obtained from
appropriate institutional review boards. The purpose, method, risks, and
benefits of UVC treatment were explained to the patients and/or their
substitute-decision makers and informed consent was obtained. Patients included
in this case series had a chronic ulcer present for at least 3 months that was
infected with MRSA. By definition, an infected wound has a positive swab culture
and clinical signs of infection, including: marked redness extending beyond the
wound margins; increased pain; and increased amounts of foul smelling, purulent
wound exudates. Oral antibiotic or topical antimicrobial therapy may or may not
be required.27
The article continues here: http://www.o-wm.com/article/1008
I hope this has been of some help. If your friend
wants to try to find someone to administer the laser treatments, I suggest that
she call some chiropractors first. My treatments cost $30 each. Not
much until you start having them daily, and insurance does not cover it.
So I guess cost is another consideration."
Reader 2--
"Your friend that has the open wound could probably be
helped with Manuka honey. I have a cousin that had surgery and it would
not heal. An old time Mexican doctor told her to put honey on the wound, It
worked! also colloidal silver can work for the msra and olive leaf. Hope
this helps some. Have they tried to cauterize the affected area?"
6. "FIBROMYALGIA IS BAD
ENOUGH WITHOUT SAVELLA"
"Fibromyalgia Is Bad Enough Without Savella -
Next week, fibromyalgia sufferers ?
desperate for relief ? may be facing a new threat, one more insidious than the
disease they've been fighting. You see, on April 28, new fibromyalgia drug
Savella will hit the pharmacy shelves ? a boon for Forest Labs, but a potential
nightmare for patients. The company's own 'Medication Guide' for
patients is a 2-page primer on suicidal thought and actions?and it only
gets worse from there... The prescribing information for
Savella starts with a black box warning, followed by a list of EIGHT warnings
and precautions which include seizures, liver damage, and abnormal bleeding.
These special warnings come in addition to the laundry list of known adverse
reactions, which range from vomiting and insomnia to chest pain and
hypertension. And this is before the drug has been sold in even a single
pharmacy, before we have any idea what the long-term side effects might be.
Bottom line: Don't let your desperation for relief lead you to try this risky
new medication ? especially when you'll find several safe natural remedies to
treat the debilitating symptoms of fibromyalgia, right in the HSI Cures
Library."
7.
INSPIRATIONAL
From a
friend--
SOUND BITES: Something to
chew on that is good for the soul?
THE SEED OF HOPE
We may picture life as spiraling
forward. We are going along, feeling safe and secure? Then comes the
upset, a period of painful disorientation. The crisis may be divorce, loss
of a job, move to different location, destructive behavior of a loved one, a
challenge to deep beliefs, serious illness, or death. The old way of
thinking and doing things comes unglued. Doubt, panic, and great pain may
accompany this phase.
Darkness comes when we are forced to
let go. We want to hang on but cannot. We are no longer in control. We
feel fearful. In the moment when the old dies and the new has not yet begun,
there may be a time of terror. "My God, my God, why have you forsaken me?" (Mark
15:34, also Psalm 22:1-22) We want to run away, but no choice remains except to
continue on. We accept the pain and awfulness and feel like we are
dying.
It seems it will last forever, but
of course, it won't. Within the death of the old lies the seed of hope for
the new?
"It is the same too with the
resurrection of the dead: what is sown is perishable, but what is raised is
imperishable; what is sown is contemptible but what is raised is glorious: what
is sown is weak, but what is raised is powerful; what is sown a natural body is
raised a spiritual body? Death is swallowed up in victory. Death, where is your
victory? Death, where is your sting?" (1 Corinthians 15:42-44, 54-55 NJB)
-- Nancy
Regensburger in Walking Through the Waters
8. PEN PAL
PROGRAM
Looking for a CFS, FM or ME Pen
Pal?
From: CF
Alliance, http://health.groups.yahoo.com/group/CFAlliance/The CF Alliance
has restored it's successful CFS, FM, ME Pen Pal
Program.
It is specifically for
CFS, FM, ME and related illness sufferers only.
If you would like a pen pal application, please email us for an
application at cfpenpal@yahoo.com
9. PILL
SPLITTING
From a
reader--
"I just finished reading your current
newsletter www.fms-help.com/042309.htm, and wanted
to point out a
small item to you. You are always very careful about the
mention of or
wording of anything which might cause a reader harm. So
when I read in your
comments about 'have always used a pill splitter to try
the least amount of
med', I felt compelled to write you on
this.
Although in the minority, there are
a number of medications which should not
have their delivery mechanism
altered (dividing pills, opening capsules,
etc.) Best case the med
is rendered completely ineffective. More often,
though, is the worst
case: The medication can reach toxic levels with an
otherwise safe
dosage.
Please advise readers to never
divide, crush, chew or otherwise alter the
delivery method of any medication,
without first consulting their physician
and/or reading the physician's
prescribing reference. My concern is that
one of your
readers might not be aware of the potential dangers and, after
reading that
you 'always' do this, will do it as well and without a further
thought.
The consequences could be fatal with some medications.
Let's take a
currently popular drug as an example. Ambien CR
From this
page:
http://www.ambiencr.com/using-ambien/ambien-dosage.aspx"AMBIEN CR tablets should be swallowed whole and never divided,
crushed, or
chewed."
The most common reason that I'm aware of, is too
early and too fast
absorption of the medication. The delivery mechanism
of these meds is
designed to withstand breakdown in the stomach, instead they
will pass into
the intestinal tract where absorption into the bloodstream is
slow and
prolonged. Disruption of the delivery
mechanism by dividing, crushing,
chewing etc. causes absorption to
occur in the stomach, raising serum
concentrations too quickly and to much
higher level than may be effective or
safe.
Unfortunately, Sanofi
Aventis (maker of Ambien CR) offers no explanation,
even in the full
prescribing reference. I find that odd. Usually the
specifics are
noted so that this form of overdose can be recognized and
treated promptly by
a physician.
OK enough of the cautionary tale, you get the
picture."
FROM DOM: My
doctor is aware of my "pill splitting." For me, taking too high a dosage
of a drug can be awful, but a smaller amount works well. I know
that with a controlled release (CR) drug, such as Ambien CR, pill splitting
wouldn't be a good idea. To save money (I am a self-pay patient with
hospitalization only and a prescription card), my internal medicine doc
will prescribe higher doses of what I need (and fewer pills) and tells me to
split the tablets. He is only doing that with meds that can safely be
split. So everyone, use caution with pill-splitting, or call your
pharmacist or doc to ask about a certain med. A list of things I use is at
www.fms-help.com/what.htm. I could tell horror stories about some
meds docs have had me on for sleep. Some of those are listed at www.fms-help.com/sleep.htm.
10. WORK
& FIBRO
FROM DOM: I
just heard from a long-time reader who is lamenting that he can't keep even a
part-time job due to his FMS/CFIDS. He says he feels "guilty" and
"lazy." He was admiring the fact that I can work part-time.
I sure do understand this kind of "beat yourself up" thinking, and I
also think men with fibro feel this more acutely than women (see men with fibro
at www.fms-help.com/men.htm). But we
are all unique and need to accept our assets and our limitations. I
have a bad habit of thinking at times (in a depressed way), "If only I didn't
have FMS/CFIDS, I could have a REAL job in Jacksonville and make good money and
not always be scraping the bottom of the barrel." But then I ponder the
fact that God has made it where I can only work part-time as a piano teacher in
a small community. It is no glamour job, but I am thankful for the
wonderful students I have. I wish I could teach twice as many, but my
health just can't handle it. If I wasn't a child of God, I would have even
bigger questions, and might even be bitter over my "wasted" college
education, marital failures, etc. I just have to believe in Romans 8:28
that all things work together for good for those who love God and are called
according to His purpose. (The next verse says that he is trying to
conform us into the image of Christ - not into the image of a successful
CEO.....ha!!!) I have addressed the topic of "work and fibro" in
several past newsletters. We all need some kind of income to survive
living in this world. Try a SEARCH at www.fms-help.com/newsletters.htm for:
"work at home," "work from home," "employment," " jobs," etc. to locate
those past newsletters where readers had sent in some good
ideas.
11. SWINE
FLU
Is a swine flu pandemic
fact or fiction?
Dr. Mercola says more
people die from the swine flu vaccine than from swine flu. Here are 3
intriguing links--
And also got
this from a reader, who is a disabled vet from FMS/CFIDS stating that vaccines
are dangerous--
"The US in 1976 was in a panic over the
Swine Flu due to one case found at Fort Dix. The Ford Administration
forced by a Democratic Congress rushed into production the Swine Flu Vaccine
Program. 35 Million were vaccinated in the US in the month of October
1976. Thousands of people had adverse reactions to the vaccine and many
died. By Dec 1976 President Ford issued a directive to cease using the
Vaccine Immediately. The US paid out Billions in vaccine damage claims.
Unfortunately for me they continued to use the vaccine on military personnel as
a control group and in April 1977 I was given the vaccine. I
finally won my VA Disability Claim 2 years ago for my CFS and FMS due to the
swine flu vaccine and multiple vaccines. Please put out this
warning for people not to get the swine flu vaccine if it is offered
again."
12.
FIBROMYALGIA AWARENESS DAY - MAY 12, 2009
This is an
excellent opportunity to send a letter or email to our family and friends
explaining what fibromyalgia and/or chronic fatigue syndrome is. I plan to
send out the article called "Understanding
Fibromyalgia" by Karen Richards http://www.healthcentral.com/chronic-pain/fibromyalgia-287033-5.html. I also think the poem "When You See
Me" by Mary Hastings at http://www.fms-help.com/poem1.htm is excellent for sharing. Another simple, but classic
awareness piece is called "My Name is Fibromyalgia" by Terri
Been at www.fms-help.com/mnif.htm. We don't want to appear whiny or self-pitying, but we
do want understanding and respect for our illness. These TV ads about just
swallowing a pill for fibro and getting on with your life are so
deceiving. Let's help increase awareness this year. If you wish to
write a personal letter to friends, it should be as brief as possible.
Everyone has problems, so reading about our problem may not particularly enthuse
them. If our illness were something visible or well-known, we would not
face so much misunderstanding. But we can continue taking measures
to educate those around us - including our doctors. And if you wish,
feel free to direct people to my FMS/CFIDS site at www.fms-help.com, so they can learn
more.
13.
LEVAQUIN - DANGER
From a reader--
"I was finally starting to feel a lot better
with my muscle aches/pains, but then a few weeks ago I was prescribed
Avelox (which is a form of Levaquin) for an upper respiratory infection and
now I have pulled or torn shoulders!!! Maybe rotator cuff injury in BOTH
shoulders! I have an appointment to see an orthopedic surgeon and
I also have a call in to a lawyer. I had no idea this could happen!
When I read the pharmacy instructions for the Avelox, it said something about "a
possible rupture of the Achilles tendon could occur" but that it was rare!
After suffering with this shoulder pain, and finally breaking down to call the
orthopedic surgeon, I saw a commercial regarding Levaquin and tendon
ruptures. Well, I looked it up on the internet and discovered that
hundreds of people who took it have been having the Achilles tendon ruptures,
AND rotator cuff injuries among many other horrible side effects.
Sometimes these injuries/side effects are irreversible!! And the worst
thing--these side effects can occur sometime after discontinuing the
medication--even 6 months or a year later! Apparently, some thing about
the drug weakens tendons/muscles where there is limited blood flow.
As you can imagine, this is devastating! I have never had shoulder
problems before. Please let everyone know that unless it is a
life or death situation, they shoudn't take any type of Levaquin! I
am very afraid I may need surgery and/or this may never heal! I have so
much pain just reaching for things, I can't reach over my head or behind my
back, have trouble getting dressed, and the pain even wakes me up from my
sleep! I just pray that with conservative treatment, my
physician will be able to relieve this horrible pain. The
fibromyalgia pain is bad, but nothing like this feeling that my arms are being
ripped out of their sockets! I have contacted an attorney because
anything I can do to possibly help make sure this drug is no longer
available to prescribe at random I will do.
By the way--I am only in my middle 40's--when you read
info about Levaquin, it says these side effects are more likely to occur in
older people over 60, etc.--NOT TRUE!!! The tons of people who are
experiencing side effects are ALL AGES even children! And, some people are
coming away with a diagnosis of fibromyalgia after taking this
drug!"
14. DOM'S
UPDATE
We had a wonderful piano
recital last Saturday at the LABC School of Music where I teach. The picture at the top of this newsletter was taken by my husband in the lobby before
the recital began. Most of my students are beginners, age 6 to retired. A funny thing
happened! Our administrator got up at the end of the program and invited everyone to
join us for a "recession" in the fellowship hall. The audience cracked
up! He meant "reception."
I feel pretty good most
days. I use the things listed at www.fms-help.com/what.htm.
However, I do have some days when I'm under stress where I feel like my
energy plug has been pulled. Overall, I think I am functioning as well as
possible for someone who is 57 and has had FMS/CFIDS since
1982.
Dominie
II Corinthians
1: 4 - "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.
Return
to Dominie's FMS/CFIDS Home Page
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.
