11.
PYROLURIA OR FMS?
From a newsletter
reader--
"Pyroluria (also
pyrroluria) is a genetic condition that interferes with the
metabolism's use
of Zinc and B6
and can result in horrible health, emotional and mental
symptoms. It is
thought that fully 1/3 of CFS patients are undiagnosed
pyrolurics (and 20$
of schizophrenics, 10% of bipolar, 20% of
alcoholics).
Here's the good news:
Zinc and B6 supplements can reverse
this condition in 3 to 4 months."
[NOTE
FROM DOMINIE: To learn more about pyroluria, do a search on the net.
Interesting!]
12.
SYNTHETIC SUPPLEMENTS
From Karen Pence--
Under the EU directive, a "positive list" has
been created to
mandate which dietary supplements will be allowed for sale.
The
list does not include about 350 supplement ingredients.......
Wondering why the positive list emphasizes synthetics? I'll
answer
that question with another question: What sort of company
specializes in manufacturing synthetic forms of natural treatments?
You
already saw it coming, didn't you? The answer:
pharmaceutical
companies. Large drug companies can easily
produce synthetic
ingredients at low cost. So the positive list will
certainly be positive for
drug companies, while many small
manufacturers of natural supplements will be forced out of
business.
[NOTE FROM DOMINIE: Lately
have you noticed all the TV commercials for new "drugs"? One of them is
"Dromias" for sleep. I looked it up on the net and it just contains a
combination of minerals, herbs, etc. Although these ingredients are
available at any health food store, this combination now has a drug "name" of
it's own. My guess is that the pharmaceutical companies are eager to reap
profits that have been going to the supplement industry. I hope that the
restrictions in the EU do not become part of our laws here in the
U.S.!]
13.
FMS/CFIDS DISABILITY ATTORNEY
Got this link from a newsletter
reader--
"Welcome to the law firm of Scott E. Davis.
We focus on representing clients who are disabled due to chronic pain or
fatigue. The firm has earned an excellent reputation nationwide for providing
quality legal representation that is both aggressive in legal strategy and
compassionate toward our clients' concerns. Chronic pain and chronic fatigue
disability cases are generally more difficult to win because the diagnoses are
often viewed with skepticism or are poorly understood by medical and legal
professionals. For this reason, it is important to choose a law firm that
concentrates in your type of diagnosis and has a solid record of success. If you
are considering filing a disability claim, please contact us for a free
telephone consultation."
[NOTE FROM DOMINIE: I am adding a
disability page to my site at http://www.fms-help.com/disability.htm It should be up very soon with some helpful tips from
newsletter readers who have been successful getting disability for
FMS/CFIDS. Personally, I am thankful to be doing so well now, but there
are many others who are not, and I think this information will be helpful for
them. I have listed what I am using at http://www.fms-help.com/what.htm - perhaps there might be some ideas there to try. But
please remember: I am not a doctor. I am a fibromyalgia/chronic fatigue syndrome
survivor.]
14.
BALANCING THE IMMUNE SYSTEM
I've had tremendous results with an immune
balancing product which I've taken for the past 3 years. I began noticing
small improvements after the 3rd week of being on this product. The
positive changes continued for the next 3-4 months then leveled off to where I
am today. I am able to live a normal life once again, for which I am
very grateful. If you are interested, I can send info via
email--write me at dom@fms-help.com. It has a 90 day
money back guarantee, which is very important for those
of us with "Millionaire's Disease!!"
15.
"IMAGINE" WHAT IT'S LIKE HAVING FIBROMYALGIA
"I get responses from people quite often on
[the IMAGINE article]. I have gotten off of most of my
meds, and have been taking vitamin/mineral supplements in replacement
of. I am lucky enough to work in an office that I can do my "stretching
exercises" throughout the day as I need them, and when things get really bad my
coworkers are pretty good about dealing with it. All of this combined with
watching what I eat (certain foods are deffinitely bad for my fibro attacks!)
and keeping myself moving and resting when necessary has helped
me greatly. My previous doctor had me so drugged up on meds that I just
could not function to maintain my job, my husband, and my son (he is 2
now!). I have read books on self hypnosis and utilize that at night - and
I'll tell you what, I am surprised but it has helped. I do not promote the
drinking of alchol, but a glass of wine at night works much better for me than
all those chemicals I was taking. Of course conversing with the Big Man
Upstairs :) and other fibro sufferers helps also."
16. EPSOM
SALT BATH AND BOWEL DETOX
See this link by Dr. Serafina
Corsello--
17.
CAUSE OF CFIDS IS BACTERIAL
[NOTE FROM DOMINIE: Could
this by why so many experience more energy and stamina when they use the immune
balancing product?? I'm not a doctor, just know what I've experienced
personally...]
18. NEW
FIBRO BOOK
Received this email from Harvey Diamond--
"This book has helped, and is helping, a significant number of
people dealing with fibromyalgia and CFS.
It is a totally natural, surprisingly simple and straightforward approach
that has somehow been overlooked.
Perhaps you can alert your readers/members of its existence. They can read all about the book at
www.fitforlifetime.com. Thank you for your ongoing efforts."
19. HYSTERECTOMY AND
FMS/CFIDS
"A lot of the members of [hysterectomy
support groups] are complaining about joint pain, and FMS, either before and/or
after their hysterectomy. I also noted when I was on an endo support group that
there was a lot of fibromyalgia and CFS amongst the members. Is there a
connection?" - Valerie
20. CFIDS
NOVEL WRITTEN BY A MAN
A newsletter reader sent this link to an
online novel called LIVING WITH A THORN by Karlton
Douglas.
21. FROM DR.
RODGER MURPHREE
A letter to those suffering from
Fibromyalgia and CFS--
"Contrary to what some doctors may have told
you, you’re not crazy, lazy, or suffering from a Prozac
deficiency. I know how frustrating it is to continue to look for
answers from doctors who don’t understand what you’re going through. These are
the same doctors who tell you to get more sleep (right!), take it easy, get more
rest, exercise more, and eat better. Or they send you off to a psychiatrist for
more antidepressant medications. This clearly shows that most doctors don’t get
it. I’ve found that most Fibromyalgia and CFS patients know more about
the illness than their doctors."
[NOTE FROM DOMINIE: READ MORE AT DR.
RODGER'S SITE AT http://www.DrRodger.com]
22. READER
NEEDS ENCOURAGEMENT AND FEEDBACK
This is from Linda RBicesilverfox@aol.com who would like to hear from anyone with similar experiences or if
you have helpful ideas--
"I HAVEN'T SEEN DR. MURPHREE YET, BECAUSE HE IS
LOCATED IN BIRMINGHAM/HOMEWOOD, AL AREA. IT IS ABOUT TWO HOURS FROM MY
HOME AND I JUST HAVEN'T FELT LIKE MAKING THE TRIP. I HAVE MADE APPOINTMENTS AND
HAD TO CANCEL AT THE LAST MINUTE BECAUSE OF DIARREHEA, PAIN, FATIGUE, ETC. (BY
THE WAY, HAVE YOUHEARD OF OTHER FIBRO PATIENTS HAVING TROUBLE MAKING,
GETTING READYAND GETTING TO APPOINTMENTS?? PLUS HAVING TO CANCEL??
I HAVE NOT REALLY RECEIVED THE CARE THAT I NEED
BECAUSE OF THIS FRUSTRATING PROBLEM. BEFORE I GOT SICK, I NEVER, NEVER HAD A
PROBLEM WITH MAKING AND KEEPING APPOINTMENTS.) HOWEVER, I HAVE SPOKEN TO DR.
MURPHREE BY E-MAIL ABOUT MY BOWEL PROBLEMS AND HE HAS SUPPLEMENTS THAT I CAN
ORDER BY MAIL PLUS HE OFFERS TELEPHONE CONSULTATIONS FOR $125.00, WHICH ARE NOT
COVERED BY INSURANCE. OF COURSE, I HAVE DONE NEITHER.
HAVE YOU HEARD OF
PROCRASTINATION BEING PART OF THIS SYNDROME????) WHAT CAN
I DO ABOUT THE "BRAIN FOG" THIS IS HINDERING ME FROM MAKING APPOINTMENTS
AND GETTING TO THE DOCTOR'S OFFICE??
I WENT TO MY FAMILY DOCTOR THIS PAST MONDAY
FOR MY HIGH BLOOD PRESSURE AND THE HEAT, BRIGHT FLUORESCENT LIGHTS AND
THE PAINT COLOR
ON THE WALLS NEARLY DID ME
IN!!!! PLUS MY BLOOD PRESSURE WAS SKY HIGH,
GIVING ME BURNING EARS AND CHEEKS SO THAT I
HAD TO CARRY A WASH CLOTH
FILLED WITH ICE TO PUT ON THEM. I WAS SO
WEAK; BAD KNEE THAT NEEDS SURGERY HINDERING MY WALKING; JUST TOTALLY MISERABLE.
AND THE DOC
GAVE ME ANOTHER BLOOD PRESSURE PILL TO START
TAKING. ALSO, HE WANTED
ME TO GIVE A BLOOD SAMPLE THAT ALWAYS MAKES
ME WOOZY ON A GOOD DAY! I HAD TO DECLINE AND PROMISE TO COME BACK LATER FOR IT.
I HAVE TO
SEE I HIM IN A MONTH. I HAVE BEEN
MISERABLE ALL SUMMER. PLEASE PUT ME IN TOUCH WITH OTHERS WHO HAVE SIMILAR
PROBLEMS." - LINDA RBicesilverfox@aol.com
23. FOOT
INSOLES FOR HYPERMOBILE JOINTS
From a newsletter reader--
"Please tell all your readers to get foot
leveler insoles computer generated, individually
made
plus see a good chiropracter that specializes
in this. One of few things that helps at all for those with hypermobile
FMS."
24. READER
FEELING BETTER
From a newsletter reader--
"I eat a more natural diet now, no preservatives (or as
few as I can); no aspartame, no soda, and am under the care of a chiropractor
and nutritionist. I found out I have low blood sugar and low adrenal
function. I feel better than I have in 20 years and am getting off of all
medicine."
25. LETTER FROM A
FORMER MEDICAL PROFESSIONAL
"I want to
share my story of what it's like to live with an incurable autoimmune disease
that affects my entire life, and in which most people have no belief of it's
existence.
I was a dental assistant for
twenty-five years, who changed careers in 1994, to become a chiropractic
assistant and massage therapist. I worked over
forty hours a week, and went to school in the
evenings. I am married to a wonderful man, and had an active social
life.
On Memorial Day Weekend, 1995, my husband got the flu, and
gave it to me. He recovered, but I did not. For the next four years, I had
overwhelming fatigue, nausea, sore throat, sore lymph nodes, pain all over my
body, and I saw my doctor at Kaiser Permanente, who did every test possible to
discover what my health problem was. Eventually, she just gave up, and
suggested that I was suffering from depression, and wanted to
prescribe an anti-depressant for me.
My husband became my advocate, and hired an attorney to
file for Social Security Disability, because I had been trying
for over four years to just "get well and go back to work", but it seemed that
it was becoming unlikely. He took me to various doctors, who did all sorts of
tests, and nothing was diagnosed until I found a doctor who knew about
Fibromyalgia. He tested my 18 body points for tenderness, and discovered that
ALL of them were tender. He diagnosed me as having Fibromyalgia/Chronic Fatigue
Syndrome, and he did prescribe an antidepressant, Elavil, to help me sleep. I
wasn't able to sleep for more than a couple of hours before I was awakened by
pain prior to taking the Elavil.
That was in 1996. I am still suffering with
Fibromyalgia/Chronic Fatigue Syndrome, and my entire life has been irrevocably
changed. I no longer am able to work, I am in chronic pain, despite daily
stretching exercises. I have NO social life at all. My husband has taken over
almost all of the chores that I used to be able to do, in addition to working to
support us both; we used to be a two-income couple. I cannot remember things,
because I suffer from "brain fog".
I recommend reading as much as one can about Fibromyalgia,
because it is a real disease, and it ruins many people's lives. My life will
never be the same as it was before I became sick and disabled by this insidious
and multifaceted illness. Please take the time to air my story, along
with the million others who suffer from this disease, so that the people in
charge will finally take this illness as seriously as it has changed our
lives."
[NOTE FROM
DOMINIE: Thank you for this letter! This is a fairly typical case of
FMS/CFIDS. Now we need a million more letters like it to be sent to the
addresses listed at http://www.fms-help.com/letter.htm on May 1, 2005. Together we can make an impact for
awareness! Please spread the
word!]
26. FOODS TO AVOID WITH
LOW THYROID
From a newsletter reader--
"What to avoid with low thyroid - my mom sent this to me
because we suspect that my thyroid is acting up:
Excessive
ingestion of certain foods can block iodine from being absorbed by the thyroid
gland; these include: turnips, cabbage, mustard, cassava root, pine nuts,
millet, peanuts, and soybeans. Until your thyroid health is
restored, you may want to avoid these foods completely. When your thyroid
is healthy again and you no longer have symptoms, you could include them
occasionally, but I recommend that you never eat them daily. The foods to watch
out for most are soybean oil in salad dressing, textured vegetable protein
used as a filler, and peanut butter.. These products are included in
many commercially packaged foods. It is interesting to note that in Asian
cultures soy is only eaten in small quantities and in forms that have been
fermented."
27. ASPARTAME HORRORS
DOCUMENTARY
Send in by a newsletter reader--
28. COCONUT OIL FOR
FMS/CFIDS
From a newsletter reader--
29. MED
DANGERS
From Dr. Jonathan Wright's newsletter--
"When drug companies run television ads
for their wares, has
anyone from the FDA ever noticed the extremely long and horrific
list of potential side
effects the announcer reels off? It can take up
half the airtime of
the ad. But these pharmaceuticals stay on the
market -- and herbs that carry
a fraction of the potential for side
effects are increasingly in danger of
being yanked.
Perhaps this is one of my more cynical days, but it does
make you
wonder if the powers that be would prefer us all to be fat,
depressed, diabetic, drug-dependent individuals. Let's face it, the
people who look at that list of attributes and see dollar signs seem
to
be the ones calling the shots."
30. CFIDS
ASSOCIATION OF AMERICA
From a newsletter reader--
Click on "Grassroots Action Center" for legislators and
legislation related to helping people with CFIDS.
31. MYCOPLASMAS AND
FMS
Received from author Marjorie Tietjen--
Every single symptom you mentioned can be
attributed to either Lyme disease and or mycoplasma. I have written several
articles on this subject. If you are interested here are the
links
What Chronic Disease Have You Been Labeled With?
Lyme Disease - Misdiagnoses And
Medical Dictatorship
32. FMS IN BRAIN OR
MUSCLES?
From immunesupport.com's Tip of the Day--
Researchers once believed that something must be wrong
with the muscles of FM patients because they seemed to be the origin of so much
pain and dysfunction. In fact, FM's former name, "fibrositis," literally meant
inflammation of the muscles and soft tissue. However, later studies ultimately
found no inflammation or nerve injury. Today, researchers generally concur that
FM is a condition which is centrally mediated by the brain and
is not a disease of the periphery.
33. ASPIRIN AND NSAID
DANGERS
From immunesupport.com's Tip of the Day--
According to Howard S. Smith, M.D., "The unwanted actions
of prostaglandins cause the pain that bothers most of us, as prostaglandins send
messages to trigger inflammation, resulting in pain and swelling. Aspirin and
traditional NSAIDs block the prostaglandins, thus blocking inflammation and
reducing pain and stiffness. But prostaglandins send a few good messages as
well, ones that protect the stomach lining and the kidneys. Therefore, by
blocking prostaglandins entirely, aspirin and traditional NSAIDs leave
us vulnerable to the risk of stomach ulcers, bleeding, and even kidney
damage." (Source: The Women's Guide to Ending Pain: An 8-Step
Program, by Howard S. Smith, M.D. and Debra Fulghum Bruce, M.S. Published by
John Wiley & Sons and available at www.amazon.com)
34. "AT HOME" YEAST
(CANDIDA) TEST
From a newsletter reader--
"My chiropractor's receptionist told
me how to check yourself for yeast: Keep a glass of water by your bed when
you go to sleep. On awaking make a lot of saliva in your mouth and spit into the
glass, if the saliva gets stringy then you have the yeast
infection. Mine did! Best part: "No doctor visit for
this!!!!"
[NOTE FROM DOMINIE: Now,
what do you do if you have yeast overgrowth (candida). I am not a doctor, but I
have heard of a few things that may help: 1. Three Lac (on
the net); 2. Caprylic acid (health food store); 3. The immune
product I take has something in it that addresses candida (please write me for
info: dom@fms-help.com); 4. Cut out sugar and refined carbohydrates.]
35. VITAMIN D OR SUNSHINE
FOR MUSCULOSKELETAL PAIN
Vitamin D deficiency is a recognized cause of chronic
musculoskeletal pain.....Drs. Plotnikoff and Quigley, at the University of
Minnesota in Minneapolis, determined serum 25-hydroxyvitamin D levels for 150
patients presenting with persistent, nonspecific musculoskeletal pain refractory
to analgesic medication. Fibromyalgia, complex regional pain
syndromes, and conditions that would inhibit vitamin D usage were ruled
out.
At least 90% of humans' required vitamin D comes from
exposure to sunlight, Dr. Michael F. Holick points out in an accompanying
editorial. He believes that recommendations to avoid all direct exposure
to sunlight and use of sunscreen whenever outdoors are "misguided" and have
"serious consequences."
Dr. Holick, of Boston University School of Medicine,
suggests that an adequate dose could be delivered to individuals in Boston by
exposing hands, face, arms and legs for about 5 to 15 minutes daily between
11:00 a.m. and 2:00 p.m.
Another way to restore adequate vitamin D levels would be an
oral dose of 50,000 IU of vitamin D once a week for 8 weeks, he adds, followed
by similar doses once or twice per month.
(from Mayo Clin Proc 2003;78:1463-1470)
35. DR. ROBY'S SITE
ON HORMONES, ALLERGIES AND FMS
Sent in by a newsletter reader--
http://www.onlineallergycenter.com/hormoneallergies/
36. READER ASKS IF
PROGESTERONE CREAM HELPS FMS
Please write Jennifer directly at jennifer.hunt@chiefind.com if you
have information on this subject or experience with progesterone cream as
related to fibromyalgia. (By the way, Jennifer submitted the
interesting site mentioned in #35.)
37. MASSAGE THAT HELPS
FMS
From a newsletter reader in Australia--
"Thought this might help (for those with
fibromyalgia who can tolerate massage and don't know about the
'Therapassist'). I had a massage yesterday from a
therapist who used a machine called a 'Therapassist'. I found it
didn't irritate my joint and muscular pain - after two years of waking up
with joint stiffness and joint and muscular pain throughout the day
associated with fibromyalgia, I actually woke up this morning feeling much
less stiffness and pain. The therapist who gave me the massage
yesterday has 40 years nursing background. She told me
the 'Therapassist' (1) is used strictly to assist the therapist
with the massage (the therapist uses hand-held equipment which is
padded (so soft on muscles) and vibrates to give a more consistent,
deeper massage than a therapist could give; (2) is very effective for
increasing circulation such as to help with lymphatic drainage
and increasing body temperature (esp. cold hands and feet) and bodily
muscular cramps associated with fibromyalgia; (3) treats the inner
muscular layer where she believes the pain is generated; (4) has been used
since 1957 and it came from America (so probably more widely
available). Anyway, although early days for me, so far I have found much
relief (when traditional remedial massage gave little relief) and want to tell
others about it (at the risk you may already know about it). Hope it
helps. Please keep your invaluable info coming."
38. REVIEW OF
FMS-HELP.COM AT BELLA ONLINE
Deanna Goodson wrote
a nice review of my fibromyalgia website at http://www.bellaonline.com/articles/art22767.asp
39. SPIRITUAL UPLIFT
CORNER
I have been enjoying late night readings of the Bible this
month. It helps me unwind and feeds my spirit. It's a book with
poetry, romance, advice, biography, suspense filled stories, wise sayings
and much more. Best of all, it's from the best author of all--GOD!
It draws my heart to His heart as I read His love letter to me. If you are
having trouble finding time to read God's Word each day, a friend sent me this
online Bible link. My family
and friends love it! Click on http://www.audio-bible.com/bible/bible.html - sit back and enjoy!
40. DOMINIE'S
PERSONAL UPDATE
I have been enormously busy lately with the Million Letter
Campaign for FMS/CFIDS. If somehow you've managed to get through this
whole newsletter and missed it, click on http://www.fms-help.com/letter.htm to
read about this exciting letter-writing campaign that will help ALL of us, as we
seek national recognition and awareness of FMS/CFIDS!
In addition, I just had a music recital for 20 students
and am also starting a Chinese Club in Clay County on Saturday. I am
most grateful for my husband, who is my time manager, and keeps me on track. I
don't know what I would do without him! He is also my photographer at the
twice a year recitals and I appreciate him sooooo much for his support of all of
my activities.
I owe my vastly improved health to a unique immune shake
that I have been using for 3 years. Don't know what I would do without
it--keeps me healthy and functioning!
Blessings,
Dominie
Bush
Return to Page 1 (Topics
1-10): http://www.fms-help.com/September2004.htm
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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