DISCLAIMER: I am not a medical
doctor. All material presented in this
newsletter is intended to be used for educational purposes only.
Consult with your own physician or health care practitioner before you make any
dietary changes. The information in this newsletter is not intended to treat,
cure or prevent any specific condition or disease.
For easier reading: Print out this newsletter to read off-line
in a comfy chair or set your text size to "LARGEST" on your computer!
SCROLL DOWN TO READ THE NUMBERED ARTICLES
BELOW....
1.
LETTERS FROM READERS
2.
CHRONIC ILLNESS AFFECTS THE FAMILY
3.
TALKING ABOUT YOUR ILLNESS AT WORK
4. HOT
FLASHES
5.
MYCOPLASMA BASICS
6.
IMMUNOGLOBULIN INJECTIONS
7.
RHINITIS AND FMS
8.
STRESS AND CFS ONSET
9.
READER NEEDS HELP WITH THYROID
10.
READER SENDS VALUABLE MYCOPLASMA RESEARCH
11. LOW
CARB DIET HELPS FMS
12.
AUTHOR OF "MY NAME IS FIBROMYALGIA" FOUND!
13.
UNRELENTING FATIGUE AND DRUGS
14.
PREGBALIN DANGEROUS?
15.
HYPERBARIC OXYGEN
16.
MAGNETS FOR PAIN
17.
BOWEL DISORDERS
18. FMS
AND TRAUMA
19.
PLANES AND PNEUMONIA
20. DR.
ROSENBAUM ON FMS/CFIDS
21. NEW
CFS THEORY
22.
FMS/CFIDS AS CHRONIC LYME DISEASE?
23.
CENTRAL NERVOUS SYSTEM DYSFUNCTION
24.
BLOCKING INFLAMMATION
25. FOOT POUCHES REMOVE TOXINS
26.
WEIGHT LOSS
27.
HOMEMADE RELIEF ITEMS
28.
FIBROMYALGIA AWARENESS DAY - MAY 12
29.
FIBROMYALGIA ADVOCACY - WE ARE NOT ALONE!
30.
DIZZINESS, TINNITUS AND HEARING LOSS
31.
INTERNATIONAL FMS/CFIDS CONFERENCE
32.
FOODS TO AVOID ("SCANT")
33. SLEEP
DISTURBANCES AND FMS
34.
MEASLES VIRUS FOUND IN BRAIN
35.
MICRONUTRIENT STARVATION
36.
SLEEP AND THE IMMUNE SYSTEM
37.
GETTING DISABILITY FOR FIBRO (revisited)
38.
HYPERIMMUNE EGG POWDER
39.
SPIRITUAL UPLIFT CORNER
40.
DOMINIE'S PERSONAL UPDATE
41. A
MERRY HEART
===========================================
1. LETTERS
FROM READERS
"This is the most wonderful web site on
fibromyalgia I have ever seen! [ http://www.fms-help.com ] It has been more helpful than any I have ever seen. It
is also laid out extremely well and easy to use."
"I read your story today [ http://www.fms-help.com/fibro.htm ]. I have many of the symptoms you described. I feel like I
have to do the research for the Dr's. They just don't understand what I'm going
through."
"All the things you said you experienced [
http://www.fms-help.com/fatigue.htm ]
were happening to me, at first I thought I had some disease like lupus MS or
maybe even a brain tumour, I was out of my mind with worry, so I went to
my GP who sent me to a neurologist, then an immunologist, I had a MRI,
which came back as nothing wrong, so their bottom line was that I have
fibromyalgia/CFS."
several times. It is comforting, in an odd
way, to hear your testimony
and to be able to nod along."
"Thank you, thank you on providing yet the
most complete and helpful site yet [ http://www.fms-help.com ]. I feel
better from just having reviewed it and to know I am not crazy and the forever
suffering mom as I have been described."
"I'm 27 and a Registered Nurse. But most of
all my defining characteristic is that I have had chronic fatigue for 11 years
and it is getting worse and I'm scared. I graduated from nursing school last
summer and have never been able to work. My couch is my life and I'm embarassed
to go back to my doctor because I'm sure he thinks I'm a hypochondriac. Every
week I have a different ache or pain or problem. I feel like a guinea pig. I
have been to over 20 specialists and I cry when they tell me, "the test came out
normal. I can't find anything physically wrong". I suffer from panic attacks and
depression too. Thank you for posting your tips. I was waiting for 8:00 am to
hit, so I could call another dr. and ask for a muscle relaxer-I hurt. So to pass
the time away I went on the interenet and found your site. I will try your tips
[ http://www.fms-help.com/tips.htm ], if
nothing else, thank you for the hope you gave me this morning!"
"Recently went to your web site [ http://www.fms-help.com ] and found it extremely helpful!!!!!! Thank you for your time, info
and understanding. It is nice and comforting to know someone is out there
with some great advice and some alternatives."
"Your Newsletter is wonderful, as
always. I don't know what we would have done without your helpful and
intelligent information during the last year with this horrible FMS
diagnosis."
"I'm almost 20 and I have had fibro
since I was 16. I wanted to tell you that I absolutely love your site [
http://www.fms-help.com ] & the
info is VERY helpful, so thank you for me and all the others who have fibro!!!
2. CHRONIC
ILLNESS AFFECTS THE FAMILY
From immunesupport.com's Tip of the
Day--
Chronic illness is a family affair. Everyone
whose life touches ours - our partners, children, parents, siblings, close
friends - will be affected by our disease to a greater or lesser extent. They
miss the person we used to be, and they aren't sure how to help us. With the
best of intentions, they may advise us to eat better, exercise more, and get
back into the swing of life. Or worse, they may abandon us emotionally, refusing
to acknowledge our struggles, or physically, deciding they can no longer bear
the burden with us. Communication on an individual level is always important,
but sometimes patients need outside help to keep their relationships as healthy
and intact as possible. Sometimes a group setting that encourages communication
between partners is helpful; other times, it might be necessary to see a
therapist one-on-one for the advice and support you need." (Source: A Delicate
Balance: Living Successfully with Chronic Illness, by Susan Milstrey Wells.)
[NOTE: This is one reason I have been
writing a fibromyalgia newsletter for the past 7 years--to support those who are
suffering with FMS/CFIDS and offer a forum for sharing information. Many
who are disabled by FMS/CFIDS do not have the support and understanding
of family and friends. Truthfully, if I didn't have this condition
myself, I would have a hard time understanding it in others! So we
need to help one another. One thing that puzzles me about the fibro
posting boards on the net is that whenever someone reports that they found
something that helped them, everyone "flames" them! I think we should
cheer them onwards! I reeeeally DON'T want to be a lifelong member of
"Club Fibro!" See my 100 TIPS FOR COPING WITH FIBROMYALGIA AND
INSOMNIA at http://www.fms-help.com/tips.htm Lots of good info!]
3. TALKING
ABOUT YOUR ILLNESS AT WORK
From immunesupport.com's tip of the
day--
"If you have a chronic illness and still manage
to work a full or part time job, you face many challenges - including a lack of
understanding among bosses and coworkers. While talking about your illness too
much will no doubt bring you the disdain of your colleagues, not talking about
your illness isn't a good idea either. "Indeed, there are some compelling
reasons to share the news about your health at work," Miryam Williamson writes.
"We will have an easier time seeking accommodations that allow us to continue
working. Also, she notes, if there is a chance we will have to apply for
disability, the fact that we have a chronic disease should appear on our work
record. Most importantly, we don't have to pretend we feel well when we don't."
(Source: A Delicate Balance: Living Successfully with Chronic Illness, by
Susan Milstrey Wells.)
4. HOT
FLASHES
From a newsletter reader--
"Just a quick note on Effexor. I was prescribed
it in place of HRT for my hot flashes. The usual dose for depression(I was
told) is 75mg or more. I took 37.5 mg and my hot flashes were greatly
reduced, which was a godsend as I was waking up from night sweats even with my
nightly klonopin and flexeril. I did find, however that I gained another
10 pounds on it. I am now taking only 18.75mg of the Effexor along
with a progesterone cream and having the same results, if not better.
Maybe one or two hot flashes a day vs. one or two and hour! This seems to
be a fairly safe substitute for HRT."
[NOTE: My hot flashes went down from 25
per day to about 3 per day since being on an immune balancing product.]
5.
MYCOPLASMA BASICS
A newsletter reader sent this interesting site
about mycoplasmas and FMS/CFIDS: http://www.newhopemedicalcenter.com/fibromylagia.htm
Here is a short quote:
"Mycoplasma species are tiny,
simple bacteria that unlike other types of bacteria lack a rigid cell
wall. These strange life forms do not cause typical infections like other
bacteria such as streptococcus and staphylococcus. Sometimes they are
found in the mouth and urinary tract of people with no evidence of disease and
yet they are implicated in the pathogenesis of serious illness such as FMS, CFS
and even cancer. To make matters even more complex, they are not easy to
diagnose as simple antibody tests are often negative, and even PCR testing seems
to be falsely negative sometimes. Finally, if the diagnosis of mycoplasma species is
made, they do not always respond to antibiotic therapy because they seem to hide
in the body. Nonetheless, mycoplasma forms can seriously disturb the
immune system. Sometimes they activate the immune system as with
inflammatory diseases like rheumatoid arthritis, and sometimes they can suppress
the immune system. Consequently, the diagnosis and treatment for these
stealth pathogens has been conflicting and generally disappointing."
[NOTE: The article goes on to discuss blood coagulation and therapies to help
FMS/CFIDS patients.]
6. IMMUNOGLOBULIN INJECTIONS
From a newsletter
reader--
"I had an immunoglobulin
injection about three weeks
ago and, though it's early days yet, I have
been
feeling steadily better, after a year of being really
bad and well
over a year before of stuff which I
didn't realize was chronic fatigue at the
time.
I don't know what else would account for my
improvement,
because all else failed previously. So
it's at least worth a try for
anyone else." [AND IN A LATER EMAIL, SHE WROTE:] The other day I mentioned
getting apparent relief from an immunoglobulin injection, but I also
should
have mentioned having bought a Niagara Thermo Cyclopad
at about the
same time, i.e. about three weeks ago.
Since then I have very little
knee and ankle
problems, nor "restless legs" at night. Also I
get
hours of relief from back, shoulder and chest pains.
The
product isn't cheap, but my experience says it's
worth the money and my usual
scepticism about sundry
"alternatives" is gone in at least this instance,
so
that's why I'm letting you know about it."
7. RHINITIS AND FMS
From immunesupport.com's Tip of
the Day--
"Rhinitis symptoms are present
in approximately 70% of FM and CFS patients. Because only 35% to 50% have
positive allergy skin tests, nonallergic mechanisms may also play a role.
Baraniuk et al (1998) found no differences in the basal secretion of markers in
vascular permeability, submucosal gland serous cell secretion, and eosinophil
and neutrophil degranulation in nonallergic FM/CFS subjects. Irritant rhinitis
has been associated with FM/CFS." (Source: The Concise Encyclopedia of
Fibromyalgia and Myofascial Pain, by Roberto Patarca-Montero, M.D., Ph.D.)
8. STRESS AND CFS
ONSET
From immunesupport.com's Tip of the Day--
"The onset of CFS may be associated with preceding stressful
events and multiple other precipitants. A study that divided CFS patients into
two groups based on whether onset was sudden or gradual found that the rate of
concurrent psychiatric disease was significantly greater in the CFS-gradual
group relative to the CFS-sudden group. Although both CFS groups showed a
significant reduction in information-processing ability relative to controls,
impairment in memory was more severe in the CFS-sudden group." (Source: The
Concise Encyclopedia of Fibromyalgia and Myofascial Pain, by Roberto
Patarca-Montero, M.D., Ph.D.)
9. READER NEEDS HELP WITH
THYROID
Please write Joe at Jdiana@wm.com if you can help. Here's his
email:
"I have a low thyroid. There is
no immune response going on but for some reason I am not converting t4 to t3. No
problem take synthroid. Wrong. I tried every form of thyroid meds known and they
all invoked a harsh reaction. My muscle spasms went into over drive. Cytemel
(t3) was the worse offender. Why? That's what I need. What's the deal? Has
anyone else had this reaction? What did they do? I am told this is life
threatening because I have no measurable t-3. HELP! I am told by my doctor that this is really rare , is
it? Some one must know! You can share my email with anyone who may know."
Joe
10. READER SENDS VALUABLE MYCOPLASMA
RESEARCH
Received from
Allison--
"Thanks so much for your
newsletters, and that article by Don Scott. The
latter got me all fired
up and I have been spending HOURS reading about
mycoplasmas on the
Internet. My naturopath hadn't heard of them, so I've
sent her the
sites below and plan to get te$ted for mycoplasmas soon. My feedback on
the Scott article: I'm very glad I read it, but I find it unfortunate that
he doesn't document his sources and show readers all these declassified
documents he has. It makes him less credible to me. As a
result
of his tone, I discounted some of what he had to say. However,
I
looked up the Winnipeg experiment he mentioned and it is true:
In 1953
the Pentagon lied to the mayor of Winnipeg and performed what were
apparently
biochemical tests on the people THIRTY SIX times. Yikes! A good
place to start is this readable overview of mycoplasmas. References
at
end of the article. In addition to this article, there are other
related
topics at the upper lefthand side of the page.
http://www.shasta.com/cybermom/asimple.htm
Next
is Drs. Garth and Nancy Nicolson's site, The Institute for
Molecular
Medicine. Their daughter came back from the Gulf War with GW
Syndrome, they subsequently contracted it, and eventually figured out
mycoplasmas' role in
GWS and treated her and themselves. http://www.immed.org Hard to navigate at first, but has lots of info
via the menus on the bottom of the page.
Here are FAQs http://www.immed.org/FAQ.htm and some of the
Nicholsons'
reports: http://www.immed.org/illness/fatigue_illness_research.html
A
recent article by Dr. Kent Holtorf suggesting CFS/FM are caused
by
"hypothalamic, pituitary, immune and coagulation dysfunction":
http://www.immunesupport.com/library/showarticle.cfm/id/4320.
Also
scroll down to the end of this page for related articles.
A November 2002
article by Gabe Mirkin, MD, on mycoplasmas and his unabashed use of
antibiotics:
http://www.immunesupport.com/library/showarticle.cfm/ID/4090/.
He says,
"Doxycycline achieves much higher tissue concentrations than
tetracycline,
while minocycline penetrates tissue far more effectively than
doxycycline."
The New Hope Medical Center site mentions autologous
vaccines, plus stealth
pathogens producing increased levels of blood
coagulation.
http://www.newhopemedicalcenter.com/chronicfatigue.htm
[NOTE: Thank you so much,
Allison, for your valuable research!]
11. LOW CARB DIET HELPS
FMS
From a newsletter
reader--
"I have found the reduced
carbohydrate diet wonderful. Muscles that have been rigid and painful for
years are now flexible and relatively pain free. This is only after 3
weeks on the Atkins diet! My cardiologist is very supportive - half of his
staff members are on the diet and feel much better."
12. AUTHOR OF "MY NAME IS FIBROMYALGIA"
FOUND!
Thanks to a newsletter reader,
I am now in touch with Terri Been, the author of the fantastic article that I
have emailed so many copies of. Here's Terri's correspondence with
me:
"My full name is Terri Been and
I live in Colorado. I wrote "Hi, My Name is Fibromyalgia" in 1996, when I
was still working. I was a Fed. Govt. Secretary for many years. At
this time, because of the fibro, I was only working part-time. I had had a
very stressful and painful day, and for the upteenth time, was trying to explain
to my co-workers what Fibromyalgia was and why I could not keep up my
workload. They just gave me the "blank look" that "normals" give
you. I was so frustrated and was almost in tears while I drove home, came
in, sat down at the computer and wrote the article. I never even edited
it! The funny thing is that someone who ran a Fibro support group here
liked the article so much, she sent it into the Arthritis Foundation and they
said it was too negative! If they only knew how it has gone around the
world! I have met wonderful people from France, Belgium and even
Madagascar!"
[NOTE: THANK YOU, TERRI,
FOR YOUR GREAT CONTRIBUTION TO THE FIBRO WORLD!!!]
13. UNRELENTING FATIGUE
AND DRUGS
From immunesupport.com's Tip of the Day--
"It is extremely important for FM patients to realize that
many medications, including sedatives, muscle relaxants, tranquilizers,
antianxiety drugs, antidepressants, and narcotic pain medications, add
significantly to an already-overwhelming fatigue. It's a toss up whether or not
the added sleep they provide can produce enough energy to overcome their sapping
effects. The list of medications that can cause somnolence is long, and many
patients are taking more than one of them. I urge all patients with unrelenting
fatigue to review their medications with a pharmacist and check for this common
contributing factor. Over-the-counter nonsteroidal anti-inflammatories and
analgesics may also contribue to decreased energy production, according to some
studies.
(Source: What Your Doctor May NOT Tell You About Fibromyalgia,
by R. Paul St. Amand, M.D., and Claudia Craig Marek.)"
14. PREGBALIN
DANGEROUS?
Got this quote from a newsletter reader--
"Pregabalin is a pain reliever that until early 2001 was
undergoing clinical trials. After receiving alarming reports that mice
that were given Pregabalin developed tumors, Pfizer Pharmaceuticals cancelled
further studies of the drug in humans. The company still hopes to win FDA
approval for Pregabalin."
15. HYPERBARIC
OXYGEN
A reader tried this and wrote the following:
"I tried mild hyperbaric oxygen briefly and felt wonderful,
but the next day I felt terrible."
16. MAGNETS FOR
PAIN
From a newsletter reader--
"I have constant head pain from a car accident in 1989.
As much as I want to be a productive member of society, and the fact that I do
enjoy interaction with people, I simply can't take the torture of having to work
an 8 hour work day and start crying on my way home every night because the pain
is so severe. Regarding magnetic therapy, I can vouch that it works. When I
first used magnets several years ago I put them on my forehead for my
headache and within minutes the pain lessened but did not disappear. And
sometimes my head would be throbbing and the magnets would at least stop
that. However, you may want to caution your readers that over time the
magnets have stopped working completely for me. I do not know if that would
happen to everyone but in the beginning they did help some. And also the magnets
must be very powerful in order to work. There are many fraudelent companies
selling magnets that I am pretty positive would not work on severe pain. I
did not use them for my FMS pain but I don't see why it would not help that pain
as well. And what is wonderful is that it's so simple and painless. If you
want to pass this onto your readers please feel free. Hopefully it will
inspire people to try them. I recommend them to everyone I know that has any
pain problems."
17. BOWEL
DISORDERS
From a newsletter reader--
"IF ANYONE HAS BOWEL DISORDERS THEY CAN GO TO
http://www.silverspringsupplements.com AND READ THIS
GUY'S STORY AND SEE THE PRODUCTS HE HAS. IF THEY WANT HIS
BOOK
"PATIENT HEAL THYSELF" IT'S FREE. THEY JUST PAY THE
SHIPPING."
[NOTE: My bowel and digestive problems went away since using an immune balancing product that works in the intestinal
tract.
18. FMS AND
TRAUMA
From immunesupport.com's Tip of the Day--
"A study from the UK provided further evidence for a link
between the onset of FMS and trauma."
[NOTE: Many, if not most, of us with fibromyalgia have
experienced unusual amounts of stress or traumatic incidents prior to the onset
of our strange disorder. My personal theory is that any kind of acute
stress, such as physical illness, viruses, mental pressures, job problems,
unresolved psychological issues, accidents, surgery, bereavements, divorce, etc.
overly challenge the immune system and this allows mycoplasmas to do their dirty
work. See articles 5 and 10 in this newsletter for more info. My
sister in law who has a Ph.D. in virology told me many years ago that all my
symptoms were coming from the hypothalamus. Lately I have been coming
across research that supports her theory. I now wonder if mycoplasmas
invade the hypothalamus and cause the widespread misery we know as FMS.
Mycoplasmas hide behind healthy cells, and this is what creates autoimmune
disorders. The body begins to attack
itself. From what I understand, the hypothalamus is a gland in our brain
that orchestrates many body functions. Vitamins and minerals are not
the answer, although they are good to take. There is something else
fundamentally wrong with our bodies that only can be solved when the immune
function is straightened out. I have been feeling 100% better since June
2001 using a hyperimmune egg powder product. To read the scientific theory
behind hyperimmune egg, see
http://www.HyperimmuneEgg.org ]
19. TRAVEL ADVISORY:
FLYING AND PNEUMONIA
MONDAY, MARCH 17, 07:49 AM (Global World News
Network)
"The mysterious flu-like outbreak of a Drug-Resistant Super Bug
continues to spread from continent to continent." Today, the World Health
Organization (WHO) issued a rare emergency travel advisory on fears that a form
of pneumonia is now a global health threat. "Until we can
get a grip on it, I don't see how it will slow down," said WHO spokesman Dick
Thompson. "People are not responding to antibiotics or antivirals. It's a
highly contagious disease and it's moving around by jet. It's bad."
The disease, known as atypical pneumonia has killed at least nine
people, including one American, and hospitalized scores of others and is being
spread from Asia around the world by air travellers. Australia's acting
chief health officer Professor John Mathews said the biggest worry about the
illness, described by the WHO as Severe Acute Respiratory Syndrome
(SARS), is that there is no treatment until the cause is
found. "The most important concern internationally is that we don't
yet know whether the agent is a virus or bacteria that's causing this
particular severe acute respiratory syndrome," said Matthews.
[NOTE: I personally use an immune balancing product.]
20. DR. ROSENBAUM ON
FMS/CFIDS
From immunesupport.com's newsletter--
Michael E. Rosenbaum, M.D., is a pioneer in Nutritional
Medicine,
specializing in the treatment of Chronic Fatigue Syndrome,
fibromyalgia,
Myofascial Pain, endocrine and metabolic disorders, and
allergies. He
states, "About 80-90% of CFS patients have fibromyalgia (FMS).
I believe
that FMS has multiple causes including chronic infections, physical
and
emotional trauma and connective tissue inflammatory diseases. CFS is
just
one potential cause of FMS." Read about his treatment
recommendations.
http://go1.warp9ems.com/go.pl?tu=24559103-1195
Click here to read TOPICS #21-40 (Page 2 of the April 2003 Newsletter)
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.
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