Dom's FMS/CFIDS Newsletter
November 12, 2008
A compassionate,
informative newsletter for people with fibromyalgia (FMS), chronic fatigue &
immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis
(M.E.)
21 topics below in PURPLE. Scroll down to see if any apply to you! Readers comments are in
BLACK. My comments are in TEAL.
Don't miss the
RED topics!
1. READERS WRITE
"It is the grace of God that I ran
across your page www.fms-help.com/fibro.htm. Your story made me cry. I've had fibro for 4
years and it has ruined my life, yet it has made me a more compassionate
and caring person."
"I just want to THANK YOU for your
passion in helping others with their challenges with this
misunderstood condition. I too have
Fibro and Chronic Fatigue."
"I am just blessed that I
found you."
"I'm so thankful that God has led me
to you and so thankful for your generosity with your time. You have
given me a hope that was diminishing. I'm going to read
everything you have posted. You have provided me with plenty of
information, that very well may help me recover."
"Thanks for your time and efforts
in behalf of all the FMS/CFS
sufferers."
"I stumbled onto your website www.fms-help.com this morning. After crying
myself to sleep last night, I woke up with a renewed energy to
find a way to feel better."
"I've enjoyed reading your website
filled with so much useful
information."
2. ANTIBIOTIC TREATMENT
From a reader--
"Just wanted to let you know that
I'm doing well on the [chlamydia pneumoniae] treatment. I am blogging
it on the website. I'm keeping track of my progress so that people who want to
go on this treatment can see what my journey has been like. Here's my
blog: http://cpnhelp.org/blog/gkirilova. So far my sugar cravings have gone way down and
I look forward to reporting more good news in the future."
3. DR. DANTINI & ANTI-VIRAL
TREATMENT
From a reader--
"I have suffered from FMS for five
years (since 29 yrs of age). I was unable to work these last five
years, was bedridden nearly three, and was on phase three of the disability
process. My husband divorced me and my parents financially supported
me. My parents never lost hope and sent me for treatment all over the
country. My pain was so excruciating that last January I was on a
Fentynal Pain patch usually administered to cancer patients, along with a myriad
of other prescriptions. At times I wished I was dead. I say all this
to clearly describe how miserable my existance was at the young age of 34.
Five months ago, by the grace of God and the recommendation of a dear friend, I
was driven to Ormond Beach to see Dr. Dantini. I had read his website and
it made sense to me-his Protocol was different than any I've tried and, having
FMS himself and successfully treating his own illness, Dr. Dantini understood
the struggles that accompany this often brutal illness.
Well, five months later, I am
strictly following the Dantini Protocol- his manegement of the illness entails
two KEY components-antiviral therapy (and that means management not a one time
deal of viral treatment- I expect relapses, but now I know how to handle them)
and latent food allergies (our immune systems have been in overdrive and
overtaxed therefore our bodies recognize common foods as enemies and tax our
system even more). Dr. Dantini uses Sage laboratories for
food testing-it is clinically backed and, for me, the most sensitive
testing. My results included 21 food intolerances. To make a long
story short, I feel better every week, not perfect, but good enough to exercise,
sleep well, GO BACK TO WORK, have a healthy relationship, and raise a five year
old! I am still healing and it is tough not to overdo it now that I have
spring in my step! Most of you would understand.
I cannot stress enough the
importance of the entire Dantini Protocol-this is a management program, not a
cure. Honestly, I know that I am infintely grateful to Dr. Dantini and his
personal research. He is one of us. If you meet him, there is no
doubt he understands what we deal with as a person with FMS/CFS. Please,
if you have the opportunity to be treated by Dr Dantini (he will work long
distance with your doctor), please do. He can give us the tools to manage
our illness, it is up to the individual to make it happen. He helped me
and it is worth a shot for anyone. His website is 4fibromyalgia.com. Peace and love to my FaMily."
4. ICE PACK
From a reader--
"I tried the ice pack on my
neck/where the little brain is. It help to quiet my thoughts and helped me
relax, it also helped with that nagging pain in my neck. I am familar with
the brain because I have taken Anatomy/Physiology class. a few years ago when I
brought up to my Dr. that there may be some kind of problem with my Hypothalamus
or something else in the head, he scoffed at me."
I too use an
ice pack at times on both the back of my neck and my forehead as I go to sleep
(wrap ice pack in cloth). It helps slow down my brain and nervous system
and stops racing thoughts. See www.fms-help.com/what.htm.
5. POST-POLIO SYNDROME
From a reader--
"I had polio at age 6, 1953 before
the vaccine came out. Post polio syndrome victims have a higher
incidence of fibromyalgia."
6. DEPLIN (L-METHYLFOLATE) FOR
DEPRESSION
"Deplin which is from Pamlab LLC and
is labeled a Medical Food but what it is is L-Methylfolate.
It is normally used for people with depression
but it affects alot of the neurotransmitters that are affected with fibro...so
they tell me. From what my dr told me, we
already have folate in our bodies but the methylfolate sends it to the brain and
though it is not a 'fibro' drug yet and is used for people with depression, and
because I am being treated for depression along with fibro, my doc is hoping it
is going to help with the fibro.
It is supposed to help those who cannot get 'over
the hump' of getting rid of the depression with the medicine out there.
Also supposed to help with mental clarity and other things. Wondered if anyone else has had any experience with
it? It takes about 3 weeks to
get into the system but I would like to say I am having some positive
effects. There are supposed to be NO
negative effects from this medicine. - Susie pjneal4@comcast.net"
7. FLU SHOTS NOT STOPPING THE FLU
From a reader--
I never get a
flu shot because my immune system is weak to begin with and I don't want to take
a chance tampering with it. I have been using an immune-balancer
since 2001, and I have not had the flu during the past 7 years, although I did
catch an upper respiratory virus a few times - once was due to working in toxic
mold www.fms-help.com/mold.htm for a
year.
8. LDN and BLOOD PRESSURE
"I read in the newsletter
www.fms-help.com/110108.htm a comment about
taking Low Dose naltrexone and it caused her blood pressure to go
up.
As you know, I too am taking the LDN and have good results. I
have
been on it since May. I would really like to make a connection
with
this writer to compare our problems. (I am not sure it is the
LDN--
today I dropped my Allegra to see if that could be the problem). I
am
currently being treated by a cardiologist for the high BP, she
has
tried several different medications for the BP, and it is not
coming
down. Last night it was 166/111! I have been on BP meds
for 15
years and very slowly it has crept upwards, with the past few
months
not responding to the meds. Yesterday I had a renal ultrasound to
see
if there is a blockage, but the gal doing it said "wow, you
have
wonderful arteries! so it doesn't sound like there is a
problem
there. Sounds good for a 66+ years! Could the person who posted
in the last
newsletter please contact me? I would be so greatful.
9. SALT CRAVING and ADRENAL FATIGUE
From a reader--
I always feel
better when I have some salt and sugar in my diet. Removing these
substances drains me.
10. "FROM FATIGUED TO FANTASTIC"
From a reader--
"Dr. Jacob Teitelbaum, Internal Medicine,
specialist
FMS, CFS has a book "From Fatigued to Fantastic" can get at
any book store,
maybe even library, it is paperback and has just about
anything we need to
know, except for the new meds that are not out. He
is retired from seeing
patients now and is establishing clinics around the
country, speaking
engagements, website "From Fatigued to Fantastic."
He is among the very
famous doctors who specialize in these illnesses, as
you may know. He was my
doctor and now I see his assistant who is also an
internal med. doc and has
helped with Dr. T's studies and now is treating
patients, me included.
I wish everyone in the group could have a copy of this
book. It of course,
does not have all the new meds that are coming
out."
11. CHOLESTEROL MEDICATIONS MAY CAUSE
FIBROMYALGIA
From a reader--
12.
VITAMIN E LEVELS LOW IN CFS
From a reader--
This may explain
why I became 95% pain free in 1996 (after 14 years of severe FMS pain) when
I began taking a powerful antioxidant (20 times stronger than Vitamin E).
I remain virtually pain free, although I deal with fatigue caused by my 40
year long sleep disorder (which my doc is currently working valiantly to
resolve).
13.
MASSAGE THERAPIST NEAR BOSTON
This massage
therapist wants to help fibro patients--
Hi
Dominie - My name is Wayne Jalbert. I am a Professional Licensed and
National
Certified Massage Therapist with over six years experience working
in
Boston's top Spas and Health Clubs. I have found that working in
the
Spa environment most people are just looking for a "fluff and
buff"
massage or a massage just because its the in thing to do. I became
a
Massage Therapist because I wanted to work with athletes,
tight
restrictive muscles, injury rehab, pain reduction, Fibromyalgia
and
Chronic Myofascial Pain Syndrome. I want to work in an area of
massage
where I can go home every night and feel like I have really
helped
people. I am currently starting a practice in Beverly,
Massachusetts.
Beverly is about 20 miles north of Boston on the North Shore
of
Massachusetts. I was wondering if you have any suggestion on how I
can
attract clients with Fibromyalgia and Chronic Myofascial Pain
Syndrome
in my area.
Sincerely,
Wayne D. Jalbert, LMT,
NCTMB
16 Lyman Street
Beverly, MA 01915
Phone: 978-273-9888
Email:
Bodyworkbywayne@aol.com
14.
BOTTLED WATER NOT SO PURE!
http://articles.mercola.com/sites/articles/archive/2008/11/08/bottled-water-not-so-pure.aspx
15.
"HIPPOCRATES SHADOW"
This book was
called to my attention by a reader--
http://diabetesupdate.blogspot.com/2008/11/book-you-must-read-hippocrates-shadow.html
"The only thing wrong with Hippocrates' Shadow:
Secrets from the House of Medicine
by David H. Newman, M.D. is its title, because it
gives you no idea what this insightful book is about. That means a lot of people
are going to walk by it who really need to read it.
The title of the
book should be Fixing Medicine. The
author is an emergency room doctor, someone who has learned to evaluate,
diagnose, and treat patients who are minutes from death. In this book, he brings
the same swift insight he uses in the ER to sorting out in a mere 214 pages
what's wrong with medical practice.
The titles of his chapters say it
all: "We Don't Know" discusses the gap between the all-knowing image doctors
present to patients and the huge number of conditions they neither understand
nor know how to treat.
"It Doesn't Work" describes how doctors continue
to use diagnostic techniques and treatments that research has shown to be
worthless.
"We Don't Agree" discusses how even well trained doctors can
look at the same test results, EKG, or X-ray and come out with completely
different diagnoses.
"We Don't Talk" and "We Prefer Tests" are
self-explanatory.
The most powerful chapters in the book are the three
that come near the end. "We Won't Unlearn" is a devastating look at the way that
false "Truths" (he calls them Axioms) become embedded in practice and how
doctors cling to them without any idea of where they came from, long after they
are discredited by research. We see this all the time with doctors who insist
that low fat diets prevent heart disease or nutritionists who tell us that our
brains will stop functioning on a low carb diet.
Dr. Newman shows that
medical practice is riddled with many more deeply held beliefs that harm
patients, beliefs based on findings published in Journals fifty or sixty years
ago which have been handed on from doctor to doctor as truth though they were
based on flimsy or even made up evidence.
The chapter, "We're Missing
the Meaning" explores the concept of placebo and shows how powerful the attitude
communicated by a doctor can be in helping or hindering healing. If you don't
think that your doctor's (erroneous) belief that you caused your diabetes by
being a lazy glutton is having an actual, negative impact on the way your body
works, this chapter will change your mind.
Finally, the chapter, "You're
a Number" discusses the way that statistics are manipulated to give patients
false ideas of risk and benefit. If you read nothing else in this book, you
should read this chapter.
In it Dr. Newman explains in simple terms a
vital concept:"number needed to treat" (NNT). The NNT is a statistical measure
of the actual number of people who will benefit from a drug or treatment. If the
NNT is 2 it means that one out of every two people who use the treatment will
benefit. This is a very different statistic from "risk" which as he explains is
used to magnify an otherwise unimpressive statistical result.
To see the
power of this statistic, consider that with statins, if you are not a middle
aged male who has already had a heart attack, the NNT is 250. That means one
person who takes a statin will not have a heart attack they'd otherwise have had
for every 250 people who take it. The other 249 people or their insurers are
paying a lot of money for a treatment that will do nothing for them and which
may cause devastating side effects.
If you have any interest in
understanding the way medicine is currently practiced, you should read the whole
book. It will make you better understand why the care you get is so
unsatisfying, and in addition it will make you realize that your doctor isn't
much happier than you are at having to practice in the current environment.
As I read through this book, I kept wishing that there was some way that
well meaning physicians like Dr. Newman could connect with concerned, activist
patients like the readers of this blog so we could work together to fix the
medical system together. Will that happen? Probably not, but we can always
dream."
16. THE HEART
and CHRONIC FATIGUE SYNDROME
If you didn't get the super-long medical
article I sent out a few days ago called "researchers discover
NEW CLUES about CFS/ME!" - write dombush@bellsouth.net
and request it. It is too long to print here. Contains fascinating
new info from CFS researchers in many countries. Finally, clues about the
CFS mystery are coming to light! The article also talks about post-viral
syndrome and why "graded exercise" can be harmful, if not fatal, to patients
with CFS/ME!
17. UPPER
CERVICAL CHIROPRACTIC
From a reader--
"Montel Williams had this
done and I recently found someone not far from me that is a chiropractor that
also works only on the neck and it is called the Upper Cervical Technique or
different other names. I must admit that I AM A HIGHLY SKEPTICAL PERSON:>)
but after studying on this and seeing it on Good Morning America, etc. for a
study for High Blood Pressure I thought I had to give it a try. I found out some
info. on me and I have a nerve pressing right on my lower upper part of my head
and saw it on the x-ray and I have a case that he had to ask some other of his
collegues about but he thinks that he should be able to help me about 90%. IF HE
DOES, YOU WILL HEAR ME SCREAMING FROM ALL THE WAY HERE:>) Here is a
site for more info. and great testimonials you can check out. There is a fibro.
one on there too. http://www.uppercervicalcare.com/testimonials.html"
I have
reported on various forms of chiropractic in several
newsletters. Search at www.fms-help.com/newsletters.htm for keywords "atlas orthogonal" - "upper
cervical" - "chiropractic" - or "upper brain
stem."
18.
L-TRYPTOPHAN FOR SLEEP
From a reader--
"There is a new formula on
the market. It just came out early this year and it works great. It is an
Advanced L-Tryptophan formaula. Life Extension makes it and I have found
it in common health food and herb shops. It is called Optimized TryptoPure Plus.
I get it at my local Herb Shop and it costs $40 for 90 pills. I guarantee it
absolutely works. Of course everyone is different, but this is a different
formula. It has something in it that bypasses the hormones that suck the life
out of L-Trypophan before it reaches the brain. The formula is set up to where
you get the most out of it without the levels being depleted before it reaches
the important parts.
I know it is pricey, but I suggest giving it a
chance because I have never seen one work so well that was not a prescription.
It says to take 3 a day, but you do whatever works for you, but given that the
bottle contains a 30 day supply. It does
help with sleep. Myself and my two kids take it. All three of us have these
diseases and problems with sleep, and these pills significantly help out. It is
the big difference between restful sleep and constantly waking up to readjust
yourself. It makes you feel naturally rested. It only takes about three days to
get intot he system fully too. It also
helps with energy and depression, and there is a little bit of better
concentration. Of course these things are only side effects of these issues we
have but for the L-tryptophan formula in this one, it has a lot better response
than any other I have tried. I figure if it can handle at least three things in
one capsule and have that great of an effect then it is worth the money. I have
cabinets full of products that never worked that eventually will just end up in
the garbage, and for this to work on me is significant to me. Like I said before though, everyone is different, and
although this formula is made for depression it is highly effective for
sleep (it even prints it on the bottle that it is for
sleep)."
19. MYCOPLASMA
INFECTIONS and FMS/CFS/ME
From a reader (in response to the
article mentioned in Topic 16 above)--
"My initial understanding was
the heart is only involved if you have CFS/ME, but NOT w/ FMS. Now I know that
is not true. We now know my dear Grandmother had FMS/ME. All her life she
was plagued w/ health problems and she found few answers other
than with the symptoms involving her heart. She died of a heart attack
and stroke at 62. She had a pacemaker in her 50's, and had problems w/
blood clots in her legs. My mom has FMS and at 62 had a severe blood clot
that nearly killed her. Fortunately she was with my brother-in-law who is a
nurse and he got her an ambulance ASAP which saved her life. Her cardiologist
wrote in the medical report that the cause was FMS. We were all surprised
he put the two together as he wasn't a fibro specialist. The cardio
doc said FMS caused hardened arteries and hard spasm-y heart muscles
(just like it does our other muscles). He said that causes the heart to pump
unevenly, leaving a pool of blood in the left chamber (it's called
regurgitation) which can then thicken and increase potential for clotting.
My mom now takes blood thinners. I
have never had any docs I've seen for FMS say it affected my heart, but when I
saw a CFS/ME specialist he told me how it affects my heart. He
did blood work and found that I have 4 mycoplasma infections that
affect my heart. One is called Chlamydia
pneumoniae (FYI - it's not a sexually transmitted virus - it is
transmitted by respiratory infections and it then mutates,
spreading throughout the body.) I take nitroglycerin
daily now and what's surprising to me is that it greatly relieves my pain,
especially in my legs. My doc said that due to our heart problems,
the smallest vessels don't get the blood they need and taking the nitro
gets circulation to those small vessels which is why it relieves
pain."
20. IS YOUR
MATTRESS MAKING YOU SICK?
21. DOM'S
UPDATE
I'm staying reeeeally functional these
days. Hurray!!! I'm keeping up with my piano teaching and church music
responsibilities. Still have bad days now and then, but I'm much better
"managed" lately. Sadly, there's no "cure" for FMS/CFIDS. For
me, the MAIN THINGS are REDUCING STRESS and getting on the right meds for
SLEEP. And also don't live or work in a MOLDY environment ("sick
building" www.fms-help.com/mold.htm). A list of things that help me is at www.fms-help.com/what.htm. Also,
check out my 100 Tips for Coping at www.fms-help.com/tips.htm. You
will also find fascinating and helpful articles on my homepage at www.fms-help.com (look in the
yellow box). I welcome all of my newsletter readers to join my
support group at http://health.groups.yahoo.com/group/dominie -
we have over 425 members now - lots of caring and sharing going
on!
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."
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.