DOMINIE'S NEWSLETTER
SEPTEMBER
2005
DISCLAIMER: I am not a medical doctor. I am a
fibromyalgia/chronic fatigue syndrome survivor. The purpose of this newsletter
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 newsletter.
1. LETTERS FROM
READERS
2. FIBROMYALGIA PAIN
SCALE
3. REVERSE
THERAPY
4. MILLION LETTER
CAMPAIGN UPDATE
5. VITAMINS BY
PRESCRIPTION ONLY?
6. FEELING IRRITABLE FROM
FMS
7. 5-HTP FOR SLEEP
8. MAGNESIUM & MALIC
ACID
9. SEX & FIBROMYALGIA
(revisited)
10. BAD EXPERIENCES WITH
DOCTORS FORUM
11. BIO-CRANIAL THERAPY
FOR FIBROMYALGIA
12. CEREBRAL ATROPHY
& CFIDS
13. RIFE MACHINE,
ETC.
14. READER GETS
SSD
15. ANA TEST FOR
AUTOIMMUNE ILLNESSES
16. ELECTROMAGNETIC
SENSITIVITY
17.
NAPROXEN
18.
NATURALCURES.COM
19. FENTANYL PATCHES
& WELLBUTRIN
20. LUNESTA
(revisited)
21. CHRONIC FATIGUE IS
NOT ALL IN THE MIND
22. IS FIBROMYALGIA
KEEPING YOU FROM WORK?
23. DR. LEMMO &
HISTAMINE DESENSITIZATION
24. ELECTROTHERAPY
(revisited)
25. MEMORY FOAM
MATTRESS
26. ARE FIBROMYALGIA AND
MS RELATED GENETICALLY?
27. NASTY PHARMACIST
(revisited)
28. MYALGIC
ENCEPHALOMYELITIS (CFS)
29. MEN WITH FIBROMYALGIA
AND/OR CHRONIC FATIGUE SYNDROME
30. SPINAL CORD
COMPRESSION & FMS
31. LAURICIDIN FOR YEAST
& VIRUSES
32. OSLER'S
WEB
33. DRUG RECALL
(revisited)
34. COCONUT OIL FOR
CFIDS
35. EXERCISE & FIBRO
(revisited)
36. GOOD DOCTOR
LIST
37. NEURONTIN &
SUICIDE
38. BOOKS ABOUT
FIBROMYALGIA
39. DR. RODGER MURPHREE'S
SUPPLEMENTS
40. EMOTIONAL EXPERIENCES
& YOUR HEALTH
41. PSYCHOLOGY TODAY
ARTICLES (revisited)
42. SILICONE
BREAST IMPLANTS & FIBROMYALGIA (revisited)
43. GENETICS &
CFS/ME
44. MARY
MOELLER
45. ROZEREM FOR
SLEEP
46. NICE LIST OF
FMS / CFS / M.E. SITES & ALSO SSD SITES
47. JOHNSON
PROTOCOL
48. FIBROMYALGIA
BUMPER STICKERS (revisited)
49. TEENAGER WITH
CFIDS
50. BOOK BY A
NEWSLETTER READER
51. ONE SIZE DOESN'T FIT
ALL
52. BOWEN TECHNIQUE FOR
FMS PAIN
53. GETTING
SSD
54. PAXIL DANGERS
(revisited)
55. FIBRO-MAN (WITH
CFS)
56. ANTIBIOTICS FOR
RHEUMATIC DISEASES
57. FIBROMYALGIA - THE
LONELY DISEASE
58. MAN WITH CFIDS/M.E. -
ANDY PORTER
59. DR. SHOEMAKER &
MOLD WARRIORS
60. 10 TIPS FOR
VISITING SOMEONE WHO IS SICK
61. PRESCRIPTION
ASSISTANCE
62. TOO MUCH SUN &
AUTOIMMUNE ILLNESS
63.
GLYCONUTRIENTS
64. DR.
TEITELBAUM
65. INTRAVENOUS
MICRONUTRIENT THERAPY
66. NATIONAL FIBROMYALGIA
ASSOCIATION (NFA)
67. CHRONIC SLEEP
DEPRIVATION
68. INCORRECT DIAGNOSIS
& TREATMENT OF LYME DISEASE!
69. FIBROMYALGIA
AWARENESS BRACELET
70. SERAX
QUESTION
71. CAREER
HANDBRAKE
72.
IMMUTOL
73. IRRITABLE BOWEL
SYNDROME OR CROHN'S?
74. FINANCIAL HELP FOR
SMALL EMERGENCIES
75. HOW TO SAY
"NO"
76. THRIFT STORE IDEA FOR
FMS
77. CANDY'S FIBRO
T-SHIRTS
78.
FIBROTALK.COM
79. LOCAL FMS
CO-OPS?
80. SOMEONE CARED ENOUGH
TO HELP
81. INDEPENDENT LIVING
CENTERS
82. BONE
TIRED
83. DESPERATE FOR
SLEEP
84. ANTI-VIRALS FOR
CFIDS
85. CRANIAL
OSTEOPATHY
86.
VIBRA-TRAINING
87. GOOD PRESS FOR CFIDS
88.
BIO-WARFARE?
89. CELIAC DISEASE, BRAIN
DAMAGE & FMS/CFIDS
90. DO YOU KNOW A GOOD
FMS/CFIDS DOCTOR?
91. ANXIETY & PANIC
ATTACKS IN WOMEN
92. CORVALEN (RIBOSE)
HELPS SURGEON WITH FMS/CFIDS
93. MIRAPEX - PARKINSON'S
MED FOR FIBRO
94.
EFIBRO.COM
95. GABA FOR ANXIETY
& TRYPTOPHAN FOR SLEEP
96. DR. DEVIN
STARLANYL
97. REMEDYFIND.COM
98. SPIRITUAL UPLIFT
CORNER
99. DOMINIE'S PERSONAL
UPDATE
1. LETTERS
FROM READERS
"Thank you for your tireless efforts for all
those experiencing FMS."
"I just read and copied 4 times the
letter to the healthy from us www.fms-help.com/healthy.htm -
It really blew me away. I am still having a hard time gaining my
breath. That letter was so remarkable. Ever since I have been
diagnosed I have kept my condition to myself. Other than my immediate
family no one knows and I have desired to keep it from my extended family.
We all know why. I am the one who was always called
'lazy,' 'stupid,' and 'Doesn’t try hard enough or her
best.' I have kept a lot of anger bottled up inside myself and
the 'vindication' of the diagnosis hasn’t helped a bit www.fms-help.com/cerebral.htm - I am more than
curiously reluctant to let my parents & grandmother know about my
syndrome. I am considering telling them. I found an interesting
reference of Fibromyalgia being a 'sister' disease to MS and was more than
interested in that assessment as my half-sister has MS. Anyway, I still don’t know if I will tell them, but the letter has
had a definite impact on me and I am grateful to you for having sent it on to
me!"
"God bless you for the service you
provide!"
"I look forward to your newsletters every
month. The minute I see your letter, I give myself plenty of time to just
go through each item and soak it all in. Sometimes the ones that I don't
think pertain to me.....usually do after I read them. So your gift to
writing these newsletters is a refuge and a safe haven for people suffering
and depending on others to help them just get through the day."
"The information you supply, you can't get
anywhere else. Believe me I've looked."
"The Thief of Many Lives by
Kathleen Houghton www.fms-help.com/thief.htm was fantastic,
as I suffer from CFIDS. I sent it to all my family and it really helped them
understand what most of my days are like. Bless you for posting
it!"
"I feel like I continually do research on FMS
and other things and my doctors wipe their behinds with it."
"I look forward to every newsletter and read it
all--very informative and also comforting. I do wish though that medical
experts will know very soon exactly what causes fibro.
It's bad enough to have it, but it sure would be a peace of mind to know how we
all got it in the first place."
"I've picked up a lot of good
tips from the newsletter - please keep it going!"
"Once again you did an amazing job on the
newsletter. I am impressed with your ability to do so much. Even in
your darkest hours you still always keep working hard for all of us. Thank
you and may God bless you and your wonderful work."
"I appreciate the info you send, otherwise we
FMS suffers would not know anything about the disease. When I mention
something I had read on the site, most doctors give me a blank
look. They know nothing about FMS and aren't eager to
learn. My daughter has Type I Diabetes. Her father and I had to do
all the research on our own to learn how to treat the disease, (same thing for
FMS)."
"Keep up the good work, we all need
you!"
"I just wanted to thank you for all of the work
that you do for those of us who suffer with Fibro. I read every article in every
issue that you send out each month, and I don't know how you do it! It is so
much work, and knowing that you are also suffering from Fibro is truly inspiring
to me." [NOTE FROM DOMINIE: I couldn't do the site and
newsletter if I felt as bad as I used to with my FMS/CFIDS - see my (long,
sad, happy ending) story at www.fms-help.com/fibro.htm I
am glad to share the useful information I come across each month, even though I
am doing 98% better now, because I just can't forget that others are still
suffering!! My motto is "No fibromite left
behind!"]
"The CF-Alliance
volunteer staff loves your newsletter! It's filled with helpful information and
a variety of personal insights into Fibromyalgia."
"Thank you for the
newsletters. They are packed with info and I really love
reading them."
"My family does not know what CHRONIC FATIGUE
is. They think it is something I made up."
"I have just become the leader of a small
support group for FMS and your site helps me tremendously. I look forward to
your newsletter each month."
"Just wanted to thank you so much for sending
me those two songs www.fms-help.com/servant.wma and
www.fms-help.com/welcome.wma.
You have a beautiful voice and I will be listening to them daily. God
bless you. I look so forward to your newletters, which have given
me more information than any doctor I have ever gone to. I am
going through a situation now with a uncaring doctor and rude
staff and I think to myself, 'How would Dominie handle this?' and
I think I have the answer. I am so sick of being treated like I'm making
up this stuff. If only they could walk a day (no make it a week, I really want
them to suffer) in my or anyones elses shoes that have fibromyalgia and
CFS. Thank you again, you ARE truly a inspiration for all of
us."
"I have been using the immune powder for four
years now myself. I am happy to hear I am using something that has worked for
someone else too."
"I was so touched by your beautiful eulogy for
your father www.fms-help.com/eulogy.htm. It was
truly inspiring and gave me a great deal of comfort. Your family's words
and thoughts were so lovingly expressed and your scriptures so consoling."
[NOTE FROM DOMINIE: It helps me in my grieving to share my
father's life with you. He had a pure and loving heart and a
Christ-like spirit of serving others.]
"I always read the entire newsletter. I
mean I don't skip over any of it, just read it from beginning to
end."
"You are a good example of a person who
has found a way to make lemonade out of the lemons that life has handed
you. Most importantly, you have used your
faith in God to sweeten the lemonade so that your endeavor can truly find a
way to quench the thrist of others. I believe that when you are living
with a condition that can be as debilitating as fibromyalgia, you have two
choices. You can use it as an excuse to question God, thus adding to your
stress and frustration. Or you can use it as a conduit to increase your
faith in God. Thankful that you chose the latter and you are
allowing God to use you to help others."
"I tried the Search Site
and it works great!" [NOTE FROM DOMINIE: Use Google search box at the end of this newsletter to find
specific topics of interest on my site and newsletters....you CAN find that
"needle in a haystack" you are looking
for!]
"I just listened to your songs. You have
a beautiful voice! Thank you...it started my day off on the right
foot!"
"Your website www.fms-help.com has been so
helpful and informative. You have confirmed all of my symptoms as valid
and not in my head - like all the MD's I've seen in the past. I now see a
holistic practitioner who is also a DO. Keep up the good work - I have
forwarded your website to many people who suffer from FM as well as others who
are not sure."
"Your website www.fms-help.com is so
validating for me, and it is so well organized, objective and
comprehensive. Thank you, thank you, thank you."
"Thank you for all the work you do for us. I know I
would be suffering a lot more without you."
"I am on your readers' list and just at this late (early?)
hour listened to your beautiful singing; it is just what the Lord ordered!
It softened my heart, which was much needed. Thank you and bless you...you
ARE a servant - I am so proud of you; all you do and being in the pain and
exhaustion that we suffer - you are amazing. I appreciate so very much the
time and effort and energy you put into your newsletters."
"I love getting your newsletters www.fms-help.com/newsletters.htm
because there is so little support or understanding of this disease in
Australia. I have printed off many pages from the letters to show to family and
friends and they now know how life is for me."
"I have a very deep respect for you because you held onto
your site, and kept building on it, after the death of your father www.fms-help.com/eulogy.htm whom I
know you were so very close to. It had to be extremely hard."
[NOTE FROM DOMINIE: Thank you so much for these kind
words. I am still grieving for my father and miss him every day! He
was a man full of love, kindness, honor, integrity and Christ! He had a
beautiful soul, and I was blessed to have him in my life for as long as I
did.]
"Without your e-mails, news letters, testemonies and
updates so many of us would have given up. We are linked together by you and
we know we are not suffering alone."
"Just read about everything I could get my hands on in
your website www.fms-help.com. I
think I have fm. My mom has fm and we are sure that my grandma had it also,
undiagnosed, of course. I have researched a lot of info on the internet,
but your site is by far, THE most informative I have come
across."
2.
FIBROMYALGIA PAIN SCALE
"That fibromyalgia pain scale is pretty
helpful. Jodi Bassett's functionality scale for Myalgic
Encephalomyelitis/CFS was skewed in my opinion. For example, she called
50% functionality a situation where a person was functioning at 30%. Look
at this example: 50%: Overall activity level
reduced to around 30% of expected. May be unable to walk without support much
beyond 100/200m, a walking stick or wheelchair may be used to travel longer
distances. Several hours of deskwork may be possible each day if requirements
for quiet and resting are met. Physically undemanding social activities are
possible."
3. REVERSE
THERAPY
From a reader--
What causes M.E., Chronic Fatigue
Syndrome and Fibromyalgia?
The condition is caused by what we call ‘Hypothalamitis’ – over-activation of the Hypothalamus
area in the Central Nervous System.
The Hypothalamus is situated in the mid-brain, from which place it
controls practically every organ in the body, mainly through the Endocrine
system. In particular, it influences the Sympathetic Nervous System (ANS) and
the Immune System, where most of the symptoms of ‘Hypothalamitis’ arise. In all,
the Hypothalamus controls energy levels, the sleep cycle, muscular function,
circulation, temperature, the gut and defence against infection.
The key function of the Hypothalamus is to co-ordinate the actions
of the Nervous system, the Muscles, the Gut and the Immune system, along with
the body’s energy reserves, so that a balance can be maintained. In this way we
can go to a state of vigilance in challenging situations, returning to repose
when the crisis is over. Or we can fight infections and then return to a
recuperation phase. Similarly, energy levels can rise in order to cope with
required activities, falling again as we prepare for rest and sleep.
The basic problem in ‘Hypothalamitis’ is that this delicate
balancing act is lost due to Bodymind’s realisation that the person is at
sustained risk of harm.
If external pressures go on too long then Bodymind, working
through the Emotional brain, or Limbic system, creates a ‘chemical memory’ about
the threat. Each time situations come up that are associated with the problem
the chemical memory is activated and the Hypothalamus places the body on ‘action
stations’ and send symptoms to warn the person that s/he is under threat. If
pressures continue, the Hypothalamus goes into runaway, chronically over-working
the body to remain on red alert, and sending escalating symptoms to warn of the
problem.
When the Hypothalamus wishes to activate an ‘alert’ reaction it
secretes Corticotrophin Release Hormone (CRH) to the Pituitary. The Pituitary,
in turn, releases Adrenocorticotrophic Hormone (ACtH) to the Adrenal Glands
which then produce a series of hormones which initially stimulate the
Sympathetic Nervous system, the Immune system and increase energy levels.
However, under constant over-stimulation from the Hypothalamus hormone
production starts to falter and the result is (a reversible) ‘Adrenal
burnout’.
Sufferers can experience muscle pain/weakness, fatigue, headaches,
swollen glands, poor concentration and memory because the Hypothalamus triggers
the release of chemicals that tense the muscles, shut down attention, exhaust
the energy supply, increase lymphatic fluid and alter blood flow to different
areas of the brain. A dysfunctional Hypothalamus ceases to
respond appropriately to feedback from the body regarding its exhausted state.
Instead it continues to flood the body with hormones that stoke up the symptoms
until problems are resolved.
Failure by the Adrenal glands to produce adequate Cortisol (which
suppresses the Immune system) is then picked up by the Hypothalamus, which
assumes that the organism is in still more danger, causing it to overwork still
more, until Immune system and Sympathetic Nervous system up-regulation becomes
chronic.
While this over-activation continues Bodymind is constantly
signalling, through the symptoms, that action is still required in order to
restore a balanced exchange between the internal and external environment.
‘Hypothalamitis’. To this extent it still awaits action on ‘the message of the
symptom’. To resolve this issue is the central task of Reverse Therapy.
4. MILLION
LETTER CAMPAIGN UPDATE
The Million Letter Campaign was held on May 1,
2005. Despite thousands of letters that were sent by sufferers all over
the world, we received surprisingly few responses. (It makes me wonder if we are
as invisible as this illness!) Hopefully the people who opened all these letters
were made more aware of fibromyalgia and chronic fatigue syndrome (myalgic
encephalomyelitis) and multiple chemical sensitivity.
If you participated in the campaign and
received a response from ANY of the addresses we wrote to, please contact MLC
founder Pattie Caprio ivorycgd@noln.com. I am posting responses at the top of
the page at www.fms-help.com/letter.htm. Thanks to all who
participated in the campaign to increase FMS/CFIDS/MCS awareness in our society.
It was wonderful to have the cooperation and united effort of so many!
Below is an encouraging and much
appreciated comment from a newsletter reader about
Pattie Caprio, the disabled graphic designer who founded the
campaign--
TO PATTIE: "Thanks for what you have
done. I remember the quote, 'It takes just one candle to light the
darkness.' You have been that one candle and have now lit many
other candles from your first fire."
5. VITAMINS BY
PRESCRIPTION ONLY?
From a reader--
"Your dietary supplements: Under attack
again"
And from another
reader--
TAKE ACTION TO DEFEAT HR 3156, LIMITING
AVAILABILITY OF DIETARY SUPPLEMENTS
We need your help to put the brakes on a bad
bill in the U.S. House of Representatives. H.R. 3156, otherwise known as the
Dietary Supplement Access and Awareness Act, would give the FDA authority to ban
virtually any herb or specialty product from the market if it failed to pass an
arbitrary risk/benefit analysis.
H.R. 3156 threatens to fundamentally alter
DSHEA (the Dietary Supplement Health & Education Act.) DSHEA allows you to
purchase dietary supplements while giving the Food and Drug Administration
authority to remove unsafe products from the market.
H.R. 3156 would hold dietary supplements to a
higher standard than riskier food additives and over-the-counter drugs. It
proposes onerous and unnecessary reporting requirements that will increase the
cost of your medicinal herbs without providing a safer product. It also
establishes a troubling risk analysis process that could remove any dietary
supplement even if there is no proof of actual harm.
According to the language of H.R. 3156, an herb
should be removed from the market if there is any chance of a so-called risk
unless "sufficient" health benefits are proved to the FDA's satisfaction. This
approach ignores the bio-individuality of individuals and is an impossible
standard for most supplement manufacturers to meet; the science in this area
receives less than 1% of U.S. research funding.
This bill is unacceptable and if allowed to
progress will severely undermine your health rights. Take action today! And tell
your friends. Together, we can put the brakes on this bill that is bad for
health, bad for you, and bad for the nation's pocketbook.
Please go to the following link to ask your
Congressperson to vote NO on this bill:
And now this--
Unfortunately, there is another anti-health bill in the House,
and a vote is coming up soon. The Central American Free Trade Agreement
(CAFTA) would trade away many sensible and humane health and environmental
standards. If you haven't already, please take a moment to read about
CAFTA and send a message to your representative:
6. FEELING
IRRITABLE FROM FMS
From a reader--
"Interesting article I believe is true because I know when my pain is
subsided there is a pleasant cheery person under the grumpy outer layer." -
Dave
http://www.drlowe.com/myofascial/generalinfo/emoneuro.htm
Snipped: More is
on the website.
"It
is common for patients who are laden with chronic, intense myofascial
constrictions to report severe mental agitation, fretting, insomnia, and other
unpleasant thoughts and emotions. It is also common to hear these patients
exclaim how profoundly relieved they are of their unpleasant thoughts and
emotions after therapy relieves their constrictions and associated trigger
points."
7. 5-HTP FOR SLEEP
From a reader--
"I had to try 3 different brands of
5-HTP before I found one that helped me sleep. It is not as
'strong' as a
sleeping pill but it definitely helps. The brand name is PLATINUM but they are
in Ontario, Canada, so I don't know if they are available in the
US."
[NOTE FROM DOMINIE:
I have made three serious attempts in the past to use 5-HTP for sleep and all
have failed. Just shows we are all different. What works for one may
not work for another. See my sleep page at www.fms-help.com/sleep.htm for
some other sleep ideas.]
8. MAGNESIUM & MALIC ACID
From a reader--
"For those who suffer from fibromyalgia, there
is help. The
combination of malic acid and magnesium has been shown to
relieve
the pain and tenderness associated with fibromyalgia as well as
increase energy production. Malic acid is a natural fruit acid
which is
present in all living cells and plays a key role in the
energy-producing
Krebs cycle. It is known as "apple acid" because
it is found in high
concentration in apples, as well as other fruits
and vegetables. Magnesium
is an essential mineral which plays a
role in many of the reactions leading
to energy production. Patients
with chronic pain and fibromyalgia are often
deficient in magnesium.
In studies, patients with fibromyalgia noticed
a significant
improvement in pain within only 48 hours of receiving the
malic
acid + magnesium supplements. More and more doctors are
recommending these supplements for their fibromyalgia patients
as they
have proven to effectively and safely improve fibromyalgia
symptoms. Jorge
Flechas, M.D., M.P.H., a holistic practitioner
in Hendersonville, N.C., has
participated in two medical studies
that have tested the combination of
malic acid and magnesium for
fibromyalgia patients. In these studies,
patients reported a
significant reduction in pain and tenderness within 48
hours
and without any side effects. In his practice, Flechas has used
these combination supplements for six years on about 500
fibromyalgia
patients. "I have found the results are positive
90 percent of the time," he
says.
Billie Jay Sahley, Ph.D., a
San Antonio nutritional specialist
and author of Malic Acid and Magnesium
for Fibromyalgia and Chronic
Pain Syndrome, reports impressive results in
fibromyalgia patients.
Several years ago, she conducted a study with 12
fibromyalgia
patients. All 12 reported a significant improvement taking a
supplement of malic acid in combination with magnesium and other
nutritional cofactors. "The sooner malic acid and magnesium are
started,
the faster patients begin to return to their normal
lifestyles," remarks
Sahley."
9. SEX & FIBROMYALGIA
(revisited)
From a newsletter reader--
"My wife has EXTREMELY BAD FIBRO
and it has been 4 years now. She got worse quickly and is still very bad
and cannot do much of anything. In terms of sex it is very difficult since
she does not have any desire to do the medicines (effexor and now cymbalta).
We got married 4 years ago and she got sick less than a year later.
Sex is a huge part of our relationship and it is very difficult. She
forces herself to do it and do it well and I know she suffers after. But I
know that she does it out of love and to keep our marriage together. Her
and I agree how important it is to our relationship and we will continue with
sex and intimacy. Her thought is that she is going to be in pain no matter
what so why not have sex and enjoy it."
10. BAD
EXPERIENCES WITH DOCTORS FORUM
Have you had a bad experience with a
doctor? Feeling
discouraged....insulted.....devastated?????
Visit this forum! You are not
alone!!!!
11.
BIO-CRANIAL THERAPY FOR FIBROMYALGIA
"I woke up when I was about 18 scared out of my
mind because I could scarcely breathe, the pain was so searing. I
immediately thought, "I must have been in an accident! Maybe hit by a
truck!" I tried to move....anything. All I could do was
scream. It took me two days just to walk normally. I am now 32 and
have been suffering since then. I have tried so many things. I
realize, looking back that I have had occasional relief and there are many
things that seem to help, but I continue to nose-dive back into pain and haven't
found one perfect answer. The closest I've come to 'unbelievably amazing'
took place very recently. I heard about bio-cranial
therapy. I wrote to a bio-cranial doctor from Texas who referred
me to a chiropractor closer to my aread who practices the procedure.
'Aaaugh!' A chiropractor? I've never seen a chiropractor for
anything and found the idea very scary. Still, I was in such a desperate
state, I was ready for yet another try.. grasping for straws! I went in (I
must admit with a negative attitude). My husband and I were sick with
worry that we were going to get ripped off. The procedure began. It
was short, and I have to admit, pretty painful. It lasted all of about 3
minutes. As I walked out, I was shaking and anxious for fear of what I'd
just done. I felt a warmth run from my head down to the center of my
body. It's been a few days and although I wish it were a one time thing, I
am told I need to come in many times at first and then hopeful only occasionally
after that. I am like a stunned deer in the headlights right now. I
have to say, I don't understand how or what has happened, but I am going back in
soon and will ask lots of questions. Truthfully, I am floored. The
only time I felt this little pain was when I was on a morphine patch, - which I
ended up ripping off because I hate feeling stoned and have four little girls to
take care of! Please, fibromyalgites - I encourage you to at least look
into this. I am dying to hear what effect it has on others with my
condition." [NOTE FROM DOMINIE: See
http://www.drstuart.net/fibro.htm for
more information. Please write Amy directly at amycall45@hotmail.com if
you have tried this and have comments to share.]
12. CEREBRAL
ATROPHY & CFIDS
From a reader--
This is from Dr. David Bell's July 2005
FMS/CFIDS/ME newsletter (which some of you may wish to subscribe
to):
"I do not like to deliver discouraging news.
But for many years the medical world has been dismissing CFS/ME because there
has been no science to say that this illness is serious. Now that scientific
information is pouring in abundantly. Is the medical world going to continue to
maintain that ME/CFS is a trivial psychosomatic problem of neurotics and
hypochondriacs? In this issue of the Lyndonville News, I
would like to summarize several studies, two of which show the presence of
cerebral atrophy. In lay terms, that means that the brain has decreased in size,
presumably because of death of brain tissue. The other reviews outline a new
study proving the cognitive symptoms and some older studies demonstrating
decreased blood flow to the brain (cerebral hypoperfusion). In my opinion these
issues are connected or linked." Click on http://www.davidsbell.com/LynNewsV2N3.htm to
read the rest of this article.
13. RIFE
MACHINE, ETC.
From a reader--
"I have been deeply involved in researching
elctr-medicine for my fibromyalgia and a freind with HIV. It's been a
wild journey I've acquired a Rife machine (rifetechnology.com), a magnetic
pulser, ozonator and a Beck blood electrifier. I am having AMAZING results
with thses machines from the fibro to curing ulcers, colitis, tinnitus, most
allergies and fatigue. They are extraordinary. What finally
convinced me to buy the Rife machine was the fact that the FDA shut Royal
Raymond Rife down in the 1930's. I have discovered so much amazing and
inexpensive stuff out there to cure almost anything, and a lot of it has been
suppressed. I am very disillusioned at this point with the medical
establishment....here are some links to follow if you're
interested."
14. READER
GETS SSD
From a newsletter reader--
"I filed for SSDI January 3, 2005 and I was approved on June
20th, 2005! A large retro check was deposited into my account on July
1st! SSDI stated that I was disabled retro to August 2003 (last time I had
worked), which is why I received a retro check. I did all the
research and paperwork myself. I decided that if I was denied (and I fully
expected to be denied the first time) that I would appeal within the appropriate
time period. If I was denied again I would then use an attorney.
I'm very fortunate that I was approved so
quickly. However I do feel that my age had a large part in the
approval as I was 60 years old when I applied. I had been putting it off
but finally decided to file. I'm so thankful that I did!
I don't know what the approval was based on, as I have numerous
things going on. I filed based on Fibromyalgia (was diagnosed by a
Rheumatologist in 1994), chronic pain, sleep apnea, bronchial asthma, peripheral
neuropathy, and severe spinal cord compression. I had surgery on my neck
for the cord compression on June 8th.
I did a LOT of research before I filed, and there were several
internet sites that helped me a lot. I also searched the Social Security
site for the lists of impairments and what did or did not qualify.
These are some of the sites that helped me:
I also had all of my medical records to send in to SSA. I
spoke with each of my doctors prior to filing to "feel them out". Each
doctor was 100% supportive of me filing and I'm sure that helped my case
too.
I sincerely hope that this information can help someone!"
[NOTE FROM DOMINIE: I have not had to file for
disability myself, but many people with FMS/CFIDS will need to do this to
survive. Please visit my disability page at www.fms-help.com/disability.htm
for more stories of people with FMS/CFIDS who applied for SSD and were
successful.]
15. ANA TEST
FOR AUTOIMMUNE ILLNESSES
From a reader--
"Some additional info for your
readers on the ANA test mentioned on your web page at www.fms-help.com/lab.htm. The
ANA test is used to diagnose Scleroderma, one of many immune-related
diseases. 95% or Scleroderma patients have a positive ANA test. See
http://www.scleroderma.org/
After getting and
researching Reynaud's phenomena the past 2 winters (95% of Scleroderma
patients have Reynaud's), I finally convinced my doctor to do an ANA
test which was positive. So now the question, was Fibromyalgia a
misdiagnosis, or do I have both? Maybe the APA test can answer that
question.
The thing is, Scleroderma can
become directly life-threatening due to pulmonary complications. I'd
rather have just had Fibro at this point. This is something everyone who thinks they have Fibro
should get tested for so proper treatment can begin. Please pass this info
along to your readers on your website."
16.
ELECTOMAGNETIC SENSITIVITY
From a reader--
"So many people with FMS (including me)
have electromagnetic sensitivities and have to limit their time
on the computer."
17.
NAPROXEN
From a reader--
"I was on Naproxen for so long it gave me an
ucler and also H-phlori!"
18.
NATURALCURES.COM
From a reader--
"You have to get the book, Natural Cures they Don't Want You To Know
About. It's number 2 on the nations best seller book.
Go to www.naturalcures.com
It's all true, its all about stuff like this but he also tells you how to heal
yourself. Everything you knew, but couldn't quite put it all together.
He put's it all together."
19. FENTANYL
PATCHES & WELLBUTRIN
From a reader--
"I have been told from people on them that the
generic Fentanyl patches do not really work they either do not touch the pain or
they deliver to much medication. Along with that I inquired to the FDA
about information on Wellbutrin because I had some really bad experiences with
it and a few others. All I can tell you I was back to 'normal' without them and
have been for years with the exception of the weight gain I can't get rid of.
(I'll settle for having the stomach fat relocated to my butt so I have some
booty and something to cushion the tender points.) Here is the Email I got back from the FDA."--
Thanks for writing. There is
not much in the way of information on
long-term use for Wellbutrin, not
withstanding data on patients who
did not need the drug. You may check
the literature at
www.nlm.nih.gov searching pubmed.
As
for the patch, the FDA approves labeling which
contains
"recommendations"for prescribing. Doctors can disregard this
if they
want. Typically, to be prescribed the patch you can't be
"opiod
naïve" or the risk of adverse side effects increases enormously.
You
can read that labeling
http://www.fda.gov/cder/foi/label/2005/19813s039lbl.pdf
The
box warning may provide more insight into your doctor's
decision.
Best regards,
MK
Division of Drug
Information
Center for Drug Evaluation and Research
Food and Drug
Administration
20. LUNESTA
(revisited)
Comments from readers--
"I talked my doctor into prescribing Lunesta
2mg and I was delighted when he prescribed 100 tablets, which I picked up at
Costco for a little over $3.00 per tablet. I was pretty excited that I had
a positive substitute for Restoral and Ambien. It didn't work for
me. I tried it two nights in a row and didn't even get a couple of good
hours sleep either night. I probably shouldn't say it, but on the third
day I traded with a friend for 10 MG Ambien. That always works. To
me, it is a huge disappointment. After all the pre-market publicity, it is
a downer for certain."
"I was told that antihistamine is not good for
the heart. I am off it now and taking the Lunesta for sleeping which
does help. I still do not get restorative sleep."
"Lunesta makes me sleep and I don't wake up all
fuzzy and weird. But I don't like to take it too often because sometimes I
fight it."
"I have been taking the sleeping medication
Lunesta for two months. So far the results are good for me. I seem to get
tired during the day and Lunesta keeps me a little groggy also. If you are on
Lunesta, please inform me as to what you are feeling with this pill. They
do not know what long term effects this sleeping med has and that bothers
me. I'd like feedback please." [RESPOND TO PATTIE DIRECTLY AT ivorycgd@noln.com.]
[NOTE FROM DOMINIE: To search
my site and past newsletters for other comments from people who have tried
Lunesta, use the Google search box at the end of this newsletter.
21. CHRONIC
FATIGUE IS NOT ALL IN THE MIND
From a reader--
"The evidence that CFIDS is a 'real' disease
seems to be coming in fast and furious! I just read this quickly, but I
thought I would send it right out to you. Along with the cerebral
atrophy evidence, it does seem like things are looking up!" http://www.newscientist.com/article.ns?id=mg18725093.700
And from another reader--
Chronic Fatigue Gene Signs
Found
"Scientists believe they have pinpointed biological
markers of chronic
fatigue syndrome which could help develop a test and
treatment for the
condition. CFS, or ME, makes people feel extremely tired,
and can cause
weakness, headaches, and disrupted sleep. Scientists, now
based at St
George's Hospital, London, found differences in the way genes
are expressed
in white blood cells of people with CFS/ME. But others say the
New Scientist
findings may not explain all cases. It is also due to be
published in the
Journal of Clinical Pathology. The scientists say their
findings fit with
the understanding that a virus, such as
Epstein-Barr, may trigger CFS/ME,
because that illness might alter
how genes are expressed. CFS/ME often first
appears as a flu-like illness,
but does not then go away.
(See Story from New Scientist) (7/21/05)
(See
Story from Baylor University Medical Center) (7/21/05)"
22. IS
FIBROMYALGIA KEEPING YOU FROM WORK?
Allsup claims a 97% SSD award rate for
disability claims--
23. DR. LEMMO
& HISTAMINE DESENSITIZATION
Link from a reader--
Prior to the development of antihistamine
drugs, histamine was once the treatment of choice for allergic and
autoimmune disorders. Clinical research published by Dr.
Horton, MD in the United States during the 1930-1950’s pioneered an effective
management of multiple sclerosis, and headaches using only histamine. Thousands
of patients received benefit from histamine (5, 6). The treatment became to be
known as "histamine desensitization". The concept is similar to allergy shots
for the treatment of asthma or hayfever, but instead of using pollen, dust, or
grasses, small doses of histamine are used instead. http://lemmo.com/side_navi/tr_index/allergies/allergies.html
24.
ELECTROTHERAPY (revisited)
From a reader--
"I have tried
electrotherapy also. I would not recommend it. It was supposed to help with my
migraines. It made them 50% worse and did absolutely nothing for my
fibromyalgia. Along with this outcome, you often have nausea and dizziness while
using the device."
25.
MEMORY FOAM MATTRESS
From a reader--
"On the subject of mattresses
and pads, I would like to add one I don't see mentioned. I bought a
'generic' version of the Tempur-pedic memory-foam (NASA-technology) mattress
pad, and I LOVE IT!! And so does my husband, who is an athlete. (Great
pair, huh? An athlete and a fibromite! The day after he runs a marathon, I
always remind him that this is how I felt EVERY DAY for years!! He
definitely "gets it" now!) Anyway, the brand name is of course
very expensive, but you can get the generic versions pretty
reasonably."
26. ARE
FIBROMYALGIA & MS RELATED GENETICALLY?
Question from a newsletter reader--
"I was diagnosed with Fibromyalgia thirteen years ago after yeas
of being told I had Fibrositis and/or Muscle Tension. My brother was
diagnosed with Primary Progressive MS about five years ago. I know
articles say Fibro is heredity. I also know there is a correlation in the
symptoms of Fibromyalgia and Multiple Sclerosis. My brother has gone
through many tests and they have found lesions in his back and brain which
confirm their diagnosis. So here is the
question: Since Fibro is heredity, could it be that my brother's
MS is also coming from the same genes that produced the Fibro
in me? We know of no one in our family who had Fibro, although I told my
parents it was probably diagnosed as rheumatism, arthritis, or the like. I
think this would be very interesting to find out and possibly help further
generations." [NOTE FROM DOMINIE: If you know of any research
on this subject, please write me at dombush@bellsouth.net
and I'll put it in the next
newsletter.]
27. NASTY
PHARMACIST (revisited)
From a reader--
"I just wanted to reply to the lady about the
nasty pharmacist. He's right. I did sign a contract that covers a lot of things
about using the medication as instructed to buying it at one pharmacy. This
protects the dr and you from looking like the addicts that use multiple
pharmacies. They do it so that they may get duplicate drugs at several
places. They get more than one doctor prescribing for them so they have
prescriptions for each pharmacy. There are too many people misusing the
medications by selling them, giving them to people they weren't prescribed for
or using them themselves for so called recreational use. And in dangerous ways,
like crushing Oxycontin pills. It makes it harder on all of those who are
careful about following doctor's orders, keeping their medications out of the
reach of others and appreciate the fact that they have compassionate
doctors. As a last resort, when all else has failed many have found that
pain medications are the only thing that relieves their severe pain at all. It's
so important that they and their doctors do all they can to assure the patients
will be able to continue getting these often life saving medications. Some with
FM went to Dr. Kervorkian due to lack of finding any relief for their sufffering
(and many act on their own). Pain can cause several life threatening
conditions itself, from shock to heart damage from a constantly increased blood
pressure and pulse due to pain. Doctors are under a lot of
scrutiny right now so to protect themselves and their patients most draw up the
contracts. The contracts also state that the doctor will not stop treating you
so long as you follow the contract. That's also a blessing when so many
are dropped by their doctors when they can't "cure" them, and they are not
willing to risk prescribing pain meds."
From a pharmacist with
FMS/CFIDS--
"I am a registered pharmacist in Iowa. I, too, have
FMS/CFIDS. Up until 3 years ago, I had practiced full time. I have been a
pharmacist for 12 years. I am now disabled. I am sorry for what happened to your
patient. That pharmacist had no right to treat her in such a way. It was
ignorance at its ugliest. Another case of what we deal with daily - "You don't
look sick/in pain." The reason her doctor uses a "medication agreement" is to
try to facilitate communication between himself and the pharmacy of her choice.
A pharmacist can be used as an advocate for your health if you choose to utilize
one pharmacy. It is imperative that your pharmacist know every medication that
you take and about the state of your health in order to properly fill your new
and existing prescriptions. We watch for drug interactions, drug and disease
interactions, drug allergies, appropriate drug use - as in are you getting
refills on time, are you using too much or too little, and yes, we do watch
for the use of controlled prescription drug abuse - but that occurs on a very
infrequent basis, thankfully. Many of the pharmacies I have worked for will
honor competitors' coupons. Instead of going elsewhere for that $10 to $25, try
asking if your own pharmacy would like to keep your business. I imagine they
would. I trust my own pharmacist implicitly. The medications I am taking affect
my life every day. If they are filled incorrectly, at the least they could do no
harm, but at the worst, they could KILL ME. Would you change doctors every time
there was a coupon in the paper? In every profession you will come across
the worst practitioners and the best. I like to hope that I am one of the best.
Pharmacists are repositories of a wealth of drug and healthcare information. I
wanted to be the best that I could be everyday for my patients. I tried to treat
them as I deserve to be treated - with respect and compassion. I thought of
myself as a teacher, too. I am teaching my patients about their medications and
sometimes about their diseases. I tried my best to answer every question my
patients had and I utilized any and all resources available to
do so. Again, I apologize for her experience. I hope that she can
find a pharmacy that she is comfortable using , and I encourage her to try
using that pharmacy exclusively. The pharmacist - patient relationship can be a
good one and mutually rewarding, too."
28. MYALGIC
ENCEPHALOMYELITIS (CFS)
From a reader--
"I wanted to remind you to use the term Myalgic
Encephalomyelitis/CFS if possible since we're trying to get the name changed and
also the adoption of the Canadian Consensus Criteria which uses the term Myalgic
Encephalomyelitis/CFS."
29. MEN WITH
FMS/CFIDS
FMS/CFIDS is an equal opportunity illness--not just for
women! See my new page with stories from men suffering wtih FMS/CFIDS at
www.fms-help.com/men.htm - they are representative of
the many men I have heard from since my site began in 1996.
30. SPINAL CORD
COMPRESSION & FMS
From a reader--
Entire article is at
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15083352&query_hl=1
CONCLUSION OF STUDY: Our findings indicate that some patients
who carry the diagnosis of fibromyalgia have both signs and symptoms consistent
with cervical myelopathy, most likely resulting from spinal cord compression. We
recommend detailed neurological evaluation of patients with fibromyalgia in
order to exclude cervical myelopathy, a potentially treatable condition.
31. LAURICIDIN FOR YEAST
& VIRUSES
"Normally individuals take the Lauricidin® and reduce/eliminate
other supplements. Lauricidin® seems to be more than an
antimicrobial/immune booster. It seems to be essential for biochemical balance
which leads to self healing."
"The antiviral, antibacterial, and antiprotozoal properties of
lauric acid and monolaurin have been recognized for nearly three decades by only
a small number of researchers: their work, however, has resulted in 50 or more
research papers an numerous U.S. and foreign patents. Prof. Dr. Jon J. Kabara
performed the original seminal research in this area of fat research. Kabara
(1968) first patented certain fatty acids (FAs) and their derivatives (e.g.,
monoglycerides (MGs) can have adverse effects on various microorganisms. While
nontoxic and approved as a direct food additive by the FDA, monolaurin adversely
affects bacteria, yeast, fungi, and enveloped viruses."
32. OSLER'S
WEB
From a reader--
"I noted a report by one of your readers (item
24 in your August Newsletter www.fms-help.com/August2005.htm) with infections
in CFS/FMS. The quotation states that the CDC said that retroviruses, for
one, were not confirmed in CFS. Well, I think this comes from an attempt
by CDC scientists to replicate a finding by Dr Elaine deFreitas, who had found
retroviruses in CFS, but her study could not be completed. Apparently, the
CDC never followed her procedures which are complex, no matter how hard she
tried to get them to do so, and this may be a reason why they did not
replicate her findings. They rushed into print to say so and to discredit
her. All this, along with the tragic
history of CFS 1984-1995, can be found in a big book, Osler's Web, by Hillary
Johnson. Not a happy but riveting read, which I recommend to all
your readers. (Available cheaply at www.amazon.com.)"
33. DRUG RECALL
(revisited)
From a reader--
"I am concerned that this drug scare will make it even harder for those of
us in need of pain meds to receive them. I always read the directions, and the
paper insert sent along from the manufacturer and every responsible adult should
do the same. Stop blaming doctors for our screw ups! I've been on Duragesic
patches since they were available years ago. If they are pulled off the market I
will have to go back to taking pills every day. Please for those of us who's
lives depend on these meds, Stop the Scare!!! Buy a Pill Book or a PDR (they are
in paperback) and read about your meds!!!!!"
34. COCONUT OIL FOR
CFIDS
From a reader--
"I don't know much about coconut oil, but I'm
definitely going to look into it! Along with helping with a great many
health issues, it supposedly helps with AIDS and
CFIDS!"
35. EXERCISE
& FIBRO (revisited)
From a reader who authored an article on this
subject--
"I noted the concern of one of your readers (item
7 in your August Newsletter www.fms-help.com/August2005.htm)
with the recommendation to exercise. I have had a similar concern, asking
myself, how is it that people in the exercise studies seem to improve, and I and
others only get worse? So I examined 3 studies, two of
which are quoted over and over again until they have attained that status of
dogma, just by repetition. They are not what they seem. It answered
my question. Please see the result of my findings below, which were published on
Co-Cure. Not everybody has the resources to examine
these studies in detail to reveal what they actually do. Like your reader,
I feel we should make this kind of information widely known so that we and our
doctors are not fooled." [Article listed in Co-Cure: DOES GRADED EXERCISE THERAPY IMPROVE
POST-EXERTIONAL MALAISE IN CFS? http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0503e&L=co-cure&F=&S=&P=1616]
36. GOOD
DOCTOR LIST
37. NEURONTIN &
SUICIDE
From a reader--
38. BOOKS
ABOUT FIBROMYALGIA
Lots of choices here including: AMERICA EXHAUSTED, THE COMPLETE IDIOT'S GUIDE TO
FIBROMYALGIA, FIBROMYALGIA FOR DUMMIES, etc.--
39. DR. RODGER
MURPHREE'S SUPPLEMENTS
From a reader--
"Have been taking Dr. Murphree's CFS/FMS
formula & digestive enzymes since July 2004. Also made drastic diet
changes...sugar, wheat, dairy, etc. Was so much better within 3 mos &
cont'd to get better. End of April I fell!!! I really fell
hard!!!! So, now am back to square one. Back to bland diet which I
had gone off of slowly without any problems. Now everything makes me feel
sick! I'm having a hard time eating anything these last 3 mos.
Wouldn't think of going of CFS/FMS formula...glad you
have found it also. Guess we just have to back up & start over
sometimes AND watch what we're doing...as in dressing ourselves in cotton
batting & being very very still!!! Had given up my walker & cane
when I went airborn! Back to Square
39!" [NOTE FROM DOMINIE: See Dr. Murphree's supplements
at www.DrRodger.com.
I also have a page about him on my site called "A Caring Doctor" www.fms-help.com/murphree.htm Read
what I use from Dr. Murphree at www.fms-help.com/what.htm.]
40. EMOTIONAL
EXPERIENCES & YOUR HEALTH
Below is a snippet from this
site--
While there are hundreds of studies that explore the
emotional roots of disease, the most insightful place to start may be the
breakthrough ACE Study.
In the 1990’s over 17,000 patients of a large health plan
were enrolled in a study to assess the link between emotional experience and
adult health. (The federal Centers for Disease Control co-designed the study.)
The results were stunning; as the authors wrote, “…they have given us reason to
reconsider the very structure of primary care medical practice in
America.”
Participants were asked whether they had experienced any of
eight forms of personal abuse or dysfunctional family behavior before the age of
18 (each called an “adverse childhood experience”, or ACE). More than half of
the patients had one ACE or more.
Even more surprising was the correlation to health outcomes:
those who had experienced an ACE were between 4 and 50 times more likely to have
an adverse health condition or disease as an adult. The adverse health outcomes
covered a surprisingly wide range, including heart disease, fractures, diabetes,
obesity, alcoholism, and more.
The authors concluded that the ACE Study “…documents the
conversion of traumatic emotional experiences in childhood into organic
disease later in life.”
41. PSYCHOLOGY
TODAY ARTICLES (revisited)
"Now that this drivel is posted online, I
strongly suggest that people go to the addresses below, and let Psychology Today
(PT) know what they think of this. To write back to PT, simply click
on the author's name."
42. SILICONE
BREAST IMPLANTS & FIBROMYALGIA (revisited)
From a reader--
"I am one of those people who has
developed FMS shortly after getting silicone breast implants. I am going to get
them removed and hope it helps, but I was 100% healthy before I got them and now
I'm barely functional."
43. GENETICS
& CFS/ME
From a reader--
07-27-2005
Scientists believe they have pinpointed
biological markers of chronic fatigue syndrome which could help
develop a test and treatment for the condition.
CFS, or ME, makes people feel extremely tired,
and can cause weakness, headaches, and disrupted sleep.
Scientists, now based at St George's Hospital,
London, found differences in the way genes are expressed in white blood cells of
people with CFS/ME.
But others say the New Scientist findings may not
explain all cases. It is also due to be published in the Journal of Clinical
Pathology.
The scientists say their findings fit with the
understanding that a virus, such
as Epstein-Barr, may trigger
CFS/ME, because that illness might alter how genes are expressed.
CFS/ME often first appears as a flu-like illness,
but does not then go away.
'Hijacked'
The researchers compared levels of gene
expression in the white blood cells of 25 healthy people and 25 who had CFS
using DNA chip technology.
They found differences in the behaviour of 35 of
the 9,522 genes they analysed.
Further genetic testing showed 15 of the genes
were up to four times more active in people with CFS, while one gene was less
active. Several genes the team pinpointed play important roles in mitochondria,
the "powerhouse" of cells.
One of the products of these genes is EIF4G1,
which is involved in the protein production in mitochondria.
EIF4G1 is hijacked by some viruses, so cells may
compensate by increasing gene expression.
The genetic differences lead to changes in how
blood proteins behave which could allow the development of a blood test for CFS,
the team say.
Other genes are involved in regulating the immune
system or playing important roles in nerve cells.
The team will now carry out further research on
1,000 CFS patients and healthy people.
Not 'made-up'
Dr Jonathan Kerr who led the research team, which
is currently in the process of moving to St George's, said: "The involvement of
such genes does seem to fit with the fact that these patients lack energy and
suffer from fatigue."
He added the work could also potentially lead to
a treatment for the condition.
"We have shown that a significant part of the
pathogenesis resides in the white blood cells and in their activity. It will
open the door to development of pharmacological interventions."
Dr Russell Lane, a neurologist at Charing Cross
Hospital, in London, said: "This exciting new work shows that some aspects of
this complex illness may be understandable in molecular terms, and that CFS is
not a 'made-up' illness."
Chris Clark, chief executive of Action on ME,
told the BBC News website: "The prospect of having a diagnostic test is very
encouraging because many people with ME can currently take well over a year to
find out what is wrong with them."
Dr Neil Abbot of Merge, a charity which funds
research into CFS/ME, said: "CFS/ME can have very different effects on patients.
"We're not looking at just one condition with a definitive patient group.
"So it might be hard to get a gene signature
which works for everyone with CFS/ME."
But he added: "This research
probably won't be the answer for everyone, but it is still very
interesting."
Another reader sent this link from the New
York Times:
Updates: Genes and Chronic Fatigue
Syndrome
By NICHOLAS BAKALAR
Published: August 2, 2005
44. MARY
MOELLER
From a reader--
"Mary Moeller has been symptom-free from
fibromyalgia for 8 years or so, and helps others through consultations, her
website, meetings, and occasional conference calls. You can sign up
for her monthly news when you look around at her website http://www.fibrosolutions.com."
45. ROZEREM
FOR SLEEP
From a reader--
ROZEREM coming in August 2005
"FDA Approves First Noncontrolled Prescription
Medication for Insomnia Date Published: July 23, 2005 Source: Newsinferno.com
News Staff
The FDA has approved a new prescription sleep
aid called Rozerem, which will reportedly treat insomnia without causing
dependence. The drug is manufactured by Takeda Pharmaceuticals, based in
Lincolnshire, Illinois, a wholly owned subsidiary of Takeda Pharmaceutical Co.
Ltd., Japan's largest pharmaceutical company.
The new drug, which will be available by late
August, works differently from other sleep aids by helping to regulate the
body's sleep-wake cycle. This will provide a new option for relief to the
one-third of American adults who suffer from insomnia to one degree or another.
Rozerem works by stimulating the
melatonin receptors in the brain, which regulate the sleep-wake cycle. It is
this cycle that keeps you alert during the day and in the evening allows the
body to wind down and fall asleep at night.
"In people who sleep normally, the pineal gland
in the brain responds to darkness by producing a hormone called melatonin," says
psychiatrist Louis J. Mini, MD, Takeda North America's medical director for
neuroscience. "This natural melatonin . dampens the alerting signal so the sleep
load overrides [the waking drive] and allows a person to fall asleep." Insomnia
occurs when these drives get out of balance.
Whereas many sleeping pills address the problem
by trying to enhance the sleep drive, Rozerem it seems tries to suppress the
wake drive by simulating the effect of melatonin. Rozerem, Mini claims, is more
effective that melatonin supplements, for which there no clinical trials yet.
In addition, Rozerem, unlike the sleeping pills
Ambien, Lunesta, and Sonata, is completely non-addicting and is the first
prescription sleep aid that is not a controlled substance.
According to a news release by the drug's
manufacturer Takeda Pharmaceuticals North America, the 8-milligram tablets show
no evidence of abuse and can safely be prescribed for long term use.
Some doctors believe that because Rozerem is
not habit forming, it will be a popular alternative to other sleeps aids and
will encourage those afflicted with insomnia to treat the condition with
medication.
David Neubauer, MD, associate director of the
Johns Hopkins Sleep Disorders Center and author of Understanding Sleeplessness:
Perspectives on Insomnia, said: "There will be a lot of interest. One -- because
it is the first sleep drug in a very long time to have a new mechanism of
action. And two -- I think there is going to be a very high comfort level in
prescribing this drug. The safety level is extremely positive. A lot of doctors
-- and a lot of patients who haven't beeen interested in a sleeping pill -- may
view this in a different light and may be more comfortable giving it a try."
Others, however, such as Dr. Milton Kramer, who
is director of the sleep disorders center of Bethesda Hospital in Cincinnati and
teaches psychiatry at the University of Cincinnati and at Wright State
University School of Medicine in Dayton, Ohio, do not believe the impact of the
drug will be that substantial, stating "its effectiveness in chronic
[sleeping-pill] users is not enormous."
While Rozerem will likely be seen as safe
alternative for insomnia relief it does have several side effects including
somnolence, dizziness, and fatigue. It is intended for people who have
difficulty falling asleep and should not be used by people who have severe liver
problems, since the drug is metabolized by the liver."
46. NICE LIST
OF FMS / CFS / M.E. SITES & ALSO SSD SITES
47. JOHNSON
PROTOCOL
From a reader--
48.
FIBROMYALGIA BUMPER STICKERS (revisited)
From a reader--
49. TEENAGER
WITH CFIDS
From a newsletter reader--
Son's Illness with Chronic Fatigue
Syndrome Launches Mom's Crusade
50. BOOK BY A
NEWSLETTER READER
FibroMyalgia
Story, A Spiritual Journey to Healing is a personal journey of one woman’s battle with the physical and
emotional torment of fibromyalgia.
A journey that begins with a traumatic accident leading
to a life-threatening blood disorder followed by a 15-year nightmare of adverse
drug reactions and the symptoms of fibromyalgia.
http://www.authorhouse.com/BookStore/ItemDetail.aspx?bookid=21137
51. ONE
SIZE DOESN'T FIT ALL
Comment from a newsletter reader--
"Everyone tells you that if you 'follow my
guidelines you will get better.' So far did any of these stories get us
healed? We all read the FMS books by so many doctors, nurses and patients.
But I still say FMS is not a ONE SIZE FITS ALL syndrome. We all know that
taking certain drugs help some and kill others. Our genes and body make up
is different because God created us like finger prints and snowflakes....all
different. We all have different DNA and Chromosomes."
[NOTE FROM DOMINIE: I can say
"Amen" to that. There are many drugs and supplements that help people
manage their FMS/CFIDS, but they do not work for everyone. I guess we
should just be glad when we find some things that help
us. FMS/CFIDS has been called
"Millionaire's Disease -- we have to try so many things before we find what
helps! For a list of what I personally use/do, see www.fms-help.com/what.htm.]
52. BOWEN
TECHNIQUE FOR FMS PAIN
From a reader--
"The Bowen Technique was developed in Australia in the
1950's
by Thomas Bowen, a gifted healer. Late in life he discovered he
had
an unusual gift that allowed him to intuitively know what was
ailing people
and how to help them relieve their pain. His healing
technique is unique in
that it was developed without him having had
any previous medical or
healthcare training.
He claimed he could feel tiny vibrations in people's muscles
that
helped him find the exact location to work on. He spoke of his
skill
with great humility and frequently stated that his work was simply
a
gift from God. Tom had the capacity to quickly assess what
was wrong with
someone and where they were out of balance. He
could look into a room full of
people, glance at them for about 20
seconds, and know what their problems
were. Although he never
advertised, it was estimated that he treated over
13,000 people in
the course of one year, and he claimed a success rate of
about 88%."
53. GETTING
SSD
"I wanted to send reassurances to the person who wrote
that. Practically everyone is turned down the first time they apply for SSI
& SSD. No matter what your disability is, I think it is a matter of
principle with the SSA to turn you down the first time you apply. Stay positive
and keep trying. It has taken my brother more than 4 years to finally obtain
Medicaid waiver for his disabled child. Check out some of the suggestions that
other people have used to help them get disability. I just wanted to send you my
encouragement to keep trying."
54. PAXIL DANGERS (revisited)
"I am a pharmacist, so I know about the side
effects of these meds. It is not just Paxil You need to taper off
most antidepressants or you can experience symptoms of 'withdrawal.' It is
really important to taper off gradually. I
know someone who had terrible withdrawal from Effexor. It took her weeks to
taper off. And the longer you have been on it, the longer you need to
make the taper. Another person I know on Effexor,
if he misses one day's dose, the next day he feels awful, like he has the worst
flu, headache, etc. You have to know that every
drug has side effects, but no one can predict who will get which
ones. Paxil works great for some people, Zoloft
works better for others, etc. The FDA is now having the
drug companies put "black box" warnings on the drug literature for these
anti-depressants to warn prescribers on the potential for suicide in people
taking these meds. Fortunately all of this information is out there on the
internet for everyone to read about, not just the health
professionals."
55. FIBRO-MAN (WITH
CFS)
Book by Ed DeHooge
"
I questioned my manhood and my masculinity...
I believe that masculinity is dangerous to your overall health. Why do I say
this? Well, there is a burden of being a man in society... There are expected
social and environmental norms that are just engrained in our American society
that are just placed on a man. People in American society expect these norms
from a man... A man gets CFS and FM, which are two illnesses with no cure;
furthermore, your manhood is of no value to help you to overcome them because
all the masculinity that one can muster-up cannot overcome CFS and
FM."
56.
ANTIBIOTICS FOR RHEUMATIC DISEASES
"For over a decade, The
Road Back Foundation has advocated research and education in the use of safe,
inexpensive antibiotics for rheumatic disease. At the start, the mission had few
participants or supporters. But, the environment for acceptance of this therapy
has changed, in part due to a series of successful clinical trials of the
antibiotic minocycline in rheumatoid arthritis and scleroderma, two key of which
were fully or partially supported by The Road Back Foundation. Studies in the
United States and abroad have been reported in such leading medical journals as
The Lancet, Annals of Internal Medicine, Journal of the American Medical
Association, New England Journal of Medicine and Arthritis & Rheumatism.
Antibiotic protocol (AP) has been found to be safe and effective in those
applications, and its benefits have been shown to increase over time. A heresy
some years ago, AP is now accepted by the United States Pharmacopoeia, the
Arthritis Foundation, and prescribed by some physicians throughout the
country.
The Road Back Foundation's support of AP (antibiotic protocol)
has been informed and enriched by the experience of thousands of rheumatic
patients throughout the world. For the great majority of these individuals, AP
has produced extraordinary benefits, including the restoration of lost functions
and the return of a quality of life they never thought could be reclaimed.
However, the spectrum of rheumatic diseases is complex, and the response to
treatment comprises many variables.
For some, the use of antibiotics to
address infectious agents may be a partial solution to the complex mechanisms of
rheumatic disease. Patients who have been sick for a long time or who present
with a virulent form of their illness might encounter challenges on the therapy.
Much is yet to be learned about the role of genetics, hormones, the immune
response, the blood's coagulation system, environmental toxins and antigens.
Diet (especially food sensitivities), climate, psychological status, stress and
drug reactions are all known to be critical factors as well and must be
carefully considered.
Our mission includes the sponsorship and
encouragement of research to broaden the understanding of how these diseases
happen, and to increase acceptance and use of antibiotic therapy as an integral
and first-line treatment for the rheumatic diseases. The Foundation remains
focused on AP as a safe and effective treatment, with minimal side effects, that
has been proven to help the majority of patients who use it properly. We plan to
remain focused and will continue to pursue the connections to eventually be a
part of solving the ancient puzzle of rheumatic disease."
[NOTE FROM DOMINIE: I can't take
antibiotics, so when needed, I use a very high quality colloidal silver (natural
broad spectrum antibiotic). I have even heard of people whose CFS improved
doing this. Remember, I am not a doctor. I just report the news. Do
your own research before trying any of the hundreds of protocols mentioned on my
site, and consult your physician for advice.]
57.
FIBROMYALGIA - THE LONELY DISEASE
[Excerpt] "I've heard FMS referred to as
'the lonely disease.' I agree. Over the years I've had symptoms, tests and
medications for allergies, heart problems, flu viruses, hormone deficiencies,
anemia, and others. One doctor giggled, 'My goodness you're a
mess.' I can still see his smirk. After negative stress test
results, a heart specialist shrugged and said, 'Just make
more laps around the block!' Evidently both of these doctors thought it was all
in my head and I began to wonder too...but if it's all in my head, why does
every muscle in my body hurt so much?"
Along this same subject, I frequently get
emails like this one--
"I find I am going through doctors at a pretty
good clip! I am on SSDI, so first I have to come up with real $, not
Medicare, to walk in their door! No biggie, compared to what I
am getting for ten minutes of a doctor's time, which is not enough time to
diagnose the common cold! Plus, I am getting the distinct
impression that I have been labeled hypochondrial somewhere
along the line. I have been really discouraged with the medical
profession lately."
58. MAN
WITH CFIDS/M.E. - ANDY PORTER
[Excerpt] In 1985, Andy Porter fell
ill with what he thought was a common cold. What follows is his story, from
being diagnosed with CFS to meeting the challenges of living with a chronic
disease. The following story tells of my dramatic change from being a fit,
healthy racing cyclist, into a physical, mental wreck within days of suffering
from a mild, acute viral infection. What it demonstrates is how the suffering
has not been helped by a biased medical profession, which on occasion, served no
more than to intensify symptoms and was not prepared to consider anything that
did not comply with well-understood, easy-to-treat conditions of ill
health.
59. DR.
SHOEMAKER & MOLD WARRIORS
From a reader--
"I noticed you had a mention of the VISUAL
CONTRAST SENSITIVITY TEST (VCS test) in #62 in your latest newsletter
www.fms-help.com/August2005.htm, with a
link to Dr Shoemaker's site. I am currently reading his book Mold
Warriors. I was surprised to read what he says about Fibromyalgia and
wanted to bring it to your attention in case you hadn't heard of this. He
says in Mold Warriors: 'I really despise the diagnosis of
fibromyalgia....Fibro usually means a biotoxin illness;
certainly more than 98 percent of patients I've seen who've been diagnosed with
fibromyalgia actually have MSH deficiency.' If he's right, this would be great
news for fibro sufferers. I don't have CFS or FMS, but do have MCS and find
your newsletter informative and helpful for overlapping symptoms. I am exploring
the possibility of bio-toxin related illness for myself, and am finding Mold
Warriors fascinating. He really explains the biochemistry behind biotoxin
illness in layman's terms
(which is sometimes difficult for this layman to
understand!). I did not read his book Desperation Medicine yet,
but I believe it is the book he
recommends first as the primer on biotoxin
illness."
And this update from the same
reader--
"Please read this article at Dr Shoemaker's
site: http://www.chronicneurotoxins.com/learnmore/fibromyalgia.cfm MSH is an anti-inflammatory, regulatory hormone made
in the hypothalamus. Without MSH, deficiency creates chronic non-restful sleep
and chronic increased perception of pain.; i.e. chronic fatigue and
chronic pain, amongst other symptoms. Dr. Shoemaker has a way of
diagnosing/testing each pathway in biotoxin illness and treating. Unfortunately,
MSH replacement is not currently approved by the FDA and he is fighting this.
But there may be other ways to increase MSH for those who are not past the point
of MSH production. Dr. Shoemaker is located in Maryland, but freely shares his
diagnostic testing and treatment protocols so that your local doctor can follow
the same program. Would definitely be worth looking into for those with CFS and
FMS."
[NOTE FROM DOMINIE: I am
amazed at how much research is coming out now about the role of the hypothalamus
in FMS/CFIDS. My sister-in-law, who has a Ph.D. in virology,
told me 15 years ago that all of my symptoms were coming from the
hypothalamus. This was unheard of back then. She is a very
smart lady!]
60. 10
TIPS FOR VISITING SOMEONE WHO IS SICK
See http://www.butyoudontlooksick.com/tipsandarticles/10_tips_for_visiting_sick.htm - The author, Christine Miserandino, who
has lupus writes: "I have unfortunately been on both sides of this
article. I have spent time visiting friends and family when they have been sick,
but I have more often been the patient everyone is visiting. Many of the visits
went very well, but unfortunately others didn’t go so well for them or me.
Hopefully my mistakes or my tips from experience will help you. Visiting someone
who is sick isn’t always easy, but it can be an enjoyable time and it should
primarily be a comfort for the patient." This is a very useful
article!
61.
PRESCRIPTION ASSISTANCE
From a reader--
"A new Partnership for Prescription Assistance
program offers people without prescription drug coverage a single point of
access to more than 275 public and private patient assistance programs,
including more than 150 programs offered by pharmaceutical companies. To access
the Partnership by phone, call 888-477-2669 or visit their Website at https://www.pparx.org/Intro.php. A good
way to get info on this site is to click on 'Media Center' at the top, and then
click on 'Frequently Asked Questions.'"
62. TOO
MUCH SUN AND AUTOIMMUNE ILLNESS
From Dr. Greenblatt's newsletter--
"Skin cancer outnumbers all other cancers
combined, and every year more than 1,000,000 new cases are diagnosed in the U.S.
alone. Scientists know that exposure to UV light is one of the primary causes of
skin cancer, perhaps because the free-radicals generated by sunlight are very
damaging to our DNA. This sort of damage can lead
to aberrant skin cells that may become cancerous. Also, some autoimmune
diseases such as lupus (systemic lupus erythematosus (SLE)) seem to start after
heavy exposure to sun, possibly due to immune damage.
The statistics are alarming and show that
teenage women are putting themselves at great risk for skin cancer and other
skin damage by tanning themselves improperly, especially with tanning
beds....Using a tanning bed is just as dangerous as
tanning outdoors. The only difference might be that there is a time limit on the
tanning bed, whereas there is no time limit on the sun unless you are very
careful."
63.
GLYCONUTRIENTS
From a reader--
"Glyconutrients play a very important role in preventing some illnesses and
helping induce recovery from others, including cancer, autoimmune diseases,
neurological disorders, and chronic or recurrent infections." Dr. Mondoa, an
authority on glyconutrients and author of a book entitled, Sugars That Heal,
says, 'Glyconutrients awaken the immune system as if from a coma and the body
begins to respond naturally fighting off pathogens more effectively without any
harmful effects.' Mondoa says there are more than 200 sugars found in nature and that most
of them are used in the for the production of energy. 'Some of these
sugars are necessary for proper immune function. Some research indicates that
they may be of equal value as vitamins, minerals, amino acids and essential
fatty acids,' he says."
[NOTE FROM DOMINIE: Too bad "one size fits all" isn't
true regarding help for FMS/CFIDS/M.E. However, I am glad that people with
our illness are getting help from various modalities. We have to try SO
many things before finding what helps our own bodies start functioning
again. For me, the desperate search began in 1982 -- it has been a
wild roller coaster ride of ups and downs (hope given, hope extinguished).
My journey toward wellness has taken me along some interesting avenues--some
helpful, some not, some dreadful, some wonderful. For a complete list of
what I use and do, see www.fms-help.com/what.htm.]
64. DR.
TEITELBAUM
From a reader--
"I was very moved by Greg's story www.fms-help.com/men.htm. I have
similarly suffered. I am being treated by Dr. Teitelbaum in Maryland
and I feel almost 100% better. His web-page is wonderful too if one can't
afford him (expensive), or doesn't want to travel. His whole protocol is
listed and it's saved my life."
65. INTRAVENOUS
MICRONUTRIENT THERAPY
From the FCI Link Newsletter--
Can IntravenousMicronutrient Therapy Help
Fibromyalgia?
IVMT:
In the past few
decades, intravenous micronutrient therapy has been popping up in more and more
alternative clinics across the country. In the past few years, Dr. David Katz, a preventive medicine
specialist at Yale-Griffin Prevention Research Center in Derby, Conn.,
has treated about 60 patients with it, and he said about 80
percent of them have had good results. He says about one in five feels better
after the first treatment and others improve more gradually, reporting changes
after four or five treatments.
WHAT IS
IT? The therapy
is a high-dose combination of B-complex vitamins, vitamin C, magnesium, and
calcium. The nutrients are delivered through a slow intravenous drip, allowing
patients to absorb higher concentrations than oral dosages. It is safe and
effective for most patients. It is painless, with only a slight pinch from the
injection and warmness experienced. Patients typically receive eight weekly
treatments and then are assessed.
WHY DOES IT
WORK? Little
research exists on IVMT. Many physicians have never heard of it. Those who do
use it in their practice are unsure of why it works but say the high
concentration of micronutrients helps strengthen the immune system, reduce free
radical damage, improve cellular membrane quality, or boost cellular energy.
Katz has a theory that fibromyalgia is a condition where blood flow to muscle is
impaired in some way, which creates a feeling of muscle overuse. Katz said the
common denominator between physical activity, the
current drugs for treatment, and apparently IVMT, is increased muscle blood
flow.
WHO IS IT FOR? Katz said IVMT
is for patients who are relatively healthy other than having fibromyalgia. Those
with kidney function problems are generally excluded from this therapy because
the kidney has to clear the high dose of nutrients infused. Also, those with
congestive heart failure or other conditions that do not respond well to an
increase in blood volume may not be candidates for IVMT. For more information on
the trial, log onto http://www.clinicaltrials.gov/ct/show/NCT00067405?order=1.
66. NATIONAL
FIBROMYALGIA ASSOCIATION (NFA)
67. CHRONIC
SLEEP DEPRIVATION
From a reader--
"I am a FMS sufferer
and your writing of your chronic sleep deprivation rang a bell because I have
had this now for 4 months and am desperately unwell." [NOTE FROM
DOMINIE: See my fibro story at www.fms-help.com/fibro.htm and my
sleep page at www.fms-help.com/sleep.htm.]
68. INCORRECT
DIAGNOSIS & TREATMENT OF LYME DISEASE
From a reader--
"I too have been diagnosed with Lyme disease by
a doctor in Kansas City, MO. She uses the Bowen Labs in Florida. The problem
with this is that this test is in the research stage - it is not
recognized by most (any other) reputable doctors and it is not covered by
insurance. I went through batteries of blood, urine, and fecal tests. I
endured about 3 months of intravenous antibiotic therapy. One full month of
which had to be completed in Kansas City, when I live in Anamosa, Iowa. I had to
live in Kansas City, in a hotel room for a month. The doctor at one point had me
taking nearly 90 tablets of medications and nutritional supplements throughout
the day. I had to schedule the day around the pills, starting at 3 am until 11
pm. I had 3 PICC (peripherally inserted central catheter) lines in my arms for
which I still have scars. All this at a cost of $70,000, of which we had to pay
$30,000, and we are still paying off the loans. This doctor also expects payment
up front before any treatment of $10,000. I have since had 2 other
opinions from the University of Iowa and an internist specializing in
infectious disease who say there is no way I have Lyme disease. This
Kansas City doctor claimed that she could cure me - I was taken in. I would
strongly caution your other reader to get another opinion if they haven't or to
at least get confirmation of the diagnosis of Lyme with the standard and
accepted Western Blot. If you are interested in the Kansas City
doctor's name, I will gladly share it with readers. She is in business
to make money off of poor souls like me looking for a cure and really seemed to
care little for me as a patient when it came down to it. I
felt I should say something, but I know there are probably a few patients out
there with FMS who do have Lyme, too."
69.
FIBROMYALGIA AWARENESS BRACELET
From a reader--
70. SERAX
QUESTION
"I
asked my fibro doc why it is that when I take my 10 mg Serax that I have more
energy, and he just said he didn't know. It seems to me that it would be
important that a relaxing drug would give energy - somewhat of a paradox,
isn't it? Do you have any ideas on this?"
[NOTE FROM DOMINIE: Please
respond to Jo directly at jojune1@yahoo.com. Serax is a benzodiazepine tranquilizer, similar
to valium. I do know that a lot of people with fibromyalgia have opposite
reactions to medications....for instance, sometimes anti-depressants cause
feelings of depression. Any comments for Jo? I think our regulating
mechanisms don't work properly.]
71. CAREER
HANDBRAKE
I loved how this reader described her
FMS/CFIDS!--
"I don’t know whether I am starting to see some
light at the end of the tunnel, but then I get slam-dunked and can’t get my act
together at all. Great as a career
“handbrake." There are so many things I have done and found out – many the hard
way that cross over with your wonderful site www.fms-help.com Also, you
as a fellow sufferer are a lifesaver – no other site has done so much for
me." [NOTE FROM DOMINIE: You can read my
fibro story at www.fms-help.com/fibro.htm
and my chronic fatigue story at www.fms-help.com/fatigue.htm
My career has taken a different turn since 1982 because of having to cope with
the limitations of this illness. Thank God, for the past 12 years I have
been able to be teach piano and guitar part-time. I also play the piano
for my church and for weddings and funerals. That is about all I can
manage. Although I have not had to apply for SSD, I am in full sympathy
with those with FMS/CFIDS who must do so in order to survive! See www.fms-help.com/disability.htm.]
72.
IMMUTOL
From a reader--
http://www.immunocorp.com
- "Raa's original fish mediciine has evolved into several renowned
products. The human product is called IMMUTOL®. It contains highly purified
Norwegian beta glucan (NBG) that is substantially more powerful. In fact,
IMMUTOL is now considered to be the most powerful natural immune enhancer in the
world, dwarfing the effectiveness of products like echinacea and mushroom
extracts.
IMMUTOL® is supported by rigorous clinical testing, and
recommended by doctors worldwide. So, if you suffer from the horrors of a weak
immune system, which can include cancer, viral syndromes (chronic fatigue,
Epstein Barr, herpes, HIV), parasitic and bacterial infections, or any other
immune problems such as colds, flu, and allergies, help your immune system! Get
IMMUTOL! And, if you're not sick and would like to ensure your good health,
there's no better way to maximize your immunity than with daily use of
IMMUTOL."
[NOTE FROM DOMINIE: I have been
using another immune powder since 2001 with excellent results.
Obviously, the immune system is involved in FMS/CFIDS. I think that
addressing a malfunctioning immune system is the first step in trying to manage
this illness. For a list of what I use/do, see www.fms-help.com/what.htm.]
73. IRRITABLE
BOWEL SYNDROME OR CROHN'S?
From a reader--
"Many people with Crohn's or Colitis
(collectively known as Inflammatory Bowel Disease, IBD) don't know we have
www.ccfa.org and support group meetings
for them. Incidentally, for months before my hospitalization and diagnosis
of Crohn's in 1996, I THOUGHT FIBROMYALGIA WAS CAUSING MY DIARRHEA. See
www.ccfa.kintera.org/Tennessee/Knoxville
for full scoop."
74.
FINANCIAL HELP FOR SMALL EMERGENCIES
From a reader--
www.modestneeds.org - "Modest Needs is a
non-profit organization reaching out to the people conventional philanthropy has
forgotten: hard-working individuals and families who suddenly find themselves
faced with small, emergency expenses that they have no way to afford on their
own."
75. HOW TO SAY
"NO"
From a reader--
"As the contact for our group I have been asked
the following:
Can I borrow some pain meds, just over the weekend? (It
was New Year's Eve.)
Can you babysit my kids? I'm exhausted.
Can you
take my laundry to the laundromat?
Can you bring me some groceries?
Can
you pick up my order of take out Chinese?
Can you lend me $300 to pay my
rent?
Can you come and get me take me to the doctor then to the pharmacy and
back
home? (A round trip of 70 miles.)
My house is a
mess, can you vacuum for me? Oh, my vacuum needs bags too,
can
you pick some up on the way over?
Can you take me to the meeting?
Oops, I
forgot to bring some money, can you loan me a dollar for a soda?
Can you
explain to my husband what I'm going through? (I can't even
explain it to my husband what I'm going through but he knows I'm
going
through something and doesn't neet explaining)
What
happened at the meeting? Did you video tape it?
The answer
is 'Sorry, no, I can't.'
Your heart [can be] in the right place, but in
this disease we must all float
our own life raft and keep others from sinking
us."
76. THRIFT STORE IDEA FOR
FMS
From a reader--
"I've often thought of opening a thrift store
with part of
the proceeds or all going to a
fund to help FM/CFS patients who really
do
need help with med money, utilities,
cash for things food stamps won't buy,
relocation within reason...so
many women especially get abandoned by
husbands,
boyfriends or family and just need an occasional hand up.
I think you
could get community support if enough advertising
was done and
it would spread the word
about FM at the same time."
77. CANDY'S
FIBRO T-SHIRTS
78.
FIBROTALK.COM
79. LOCAL FMS
CO-OPS?
From a reader--
"My house is a total wreck. Too bad we
can't figure a way to start a help each other (in our areas) FMS co-op! Like
house work, shopping , cooking or whatever."
80. SOMEONE
CARED ENOUGH TO HELP
From a reader--
"When RSD struck, I was left with two curled up
crippled hands, agonizing pain, suicidal tendencies, confusion, skin
sensitivity, etc etc etc. Horrible things had to be done to me medically to
prevent the amputation of my limbs. Perhaps if someone had pleaded for me to get
help, I wouldn’t have been as bad off. Maybe someone would have showed me
the way to improving the dreadful lot I was in. I couldn’t work, clean, I
couldn’t even comb my hair without agonizing pain, let alone worry about having
a clean home. The medicine I was on was making my heart fail. I also had
undiagnosed athsma and chronic pneumonia. Well, guess what. Hubby didn’t care, cuz he was horribly selfish and
cuz he was an oink. So the home descended into a state of filth that was
shocking. He totally ignored me. And one day a friend came
along, a new friend that stood up to the wrong-doings and apathy and
the ‘don’t get involved’ attitude of people around her, and faced it off. She
DID something. She cleaned my home, she cooked me food, she massaged my painful
shoulders, she took me places, she helped me out in so many ways, all the while
she was dying of terminal cancer. Well, the
story goes on… God saw her plight and healed her of the cancer (a most dramatic
thing to have personally witnessed!!! ) and healed me as
well. Thus it is when we truly stick our
necks out for the Creator. Sometimes people try to chop them off, but the
Creator is there to make our heart-felt works bear fruit because He responds
very deeply and personally when we opt to simply do the right
thing!"
81.
INDEPENDENT LIVING CENTERS
From a reader--
What is an Independent Living Center?
Independent Living Centers are typically non-residential,
private, non-profit, consumer-controlled, community-based organizations
providing services and advocacy by and for persons with all types of
disabilities. Their goal is to assist individuals with disabilities to achieve
their maximum potential within their families and communities.
Also, Independent Living Centers serve as a strong advocacy
voice on a wide range of national, state and local issues. They work to assure
physical and programmatic access to housing, employment, transportation,
communities, recreational facilities, and health and social services. These are
just a few of the services offered.
There are nearly 500 ILC’s in the USA. Many are state
supported. See http://www.ilusa.com for
information and list of states.
82. BONE
TIRED
From a newsletter reader--
"Bone tired. Sufferers of the
mysterious ailment must cope with a host of challenges. Drop-dead
exhaustion hovers. Routines that are second nature now feel like
monumental tasks. Getting out of bed consumes precious energy.
What doesn't? Your doctor, employer, even family and friends, may assume you're
lazy. They're wrong. This is chronic fatigue syndrome - and,
no, you're not imagining it." [Read this great article at: http://www.nydailynews.com/city_life/health/story/335804p-286847c.html -
it really describes the CFIDS problem, which levels the bright and ambitious
almost overnight.]
83. DESPERATE
FOR SLEEP
I have a friend with severe fibro who is a
church pianist. She had to have some surgery done and was
looking forward to the anesthesia so that she could
sleep! (Only a fibromite would understand that!!) See my sleep page
at www.fms-help.com/sleep.htm
84.
ANTI-VIRALS FOR CFIDS
Here are the latest comments I received from the
"sleepless man" that I have been reporting on for the past several
years--
"Dr. Johnson has proved EVERYONE with FMS/CFS
has abnormal viral counts. Why isn't everyone on your list on anti-virals
(Valtrex or
Valcyte)??? Anyone with abnormal viral loads should be on it for
life until virus is not detectible. Those
without results didn't get to that stage. I am going back to work August 25. Gained 35 lbs
muscle. Lift weights every other day, walk 40
minutes every other day. Still disturbed sleep --
no delta, but don't take any sleep meds -- they don't work. Pain no better.
There is a link between allergy and virus and the immune
system. To stop allergy you must kill the cells
that react abnormally to allergic substances. You
need 300 mg daily of luteolin in water, 50 mg of rosmarinic acid and a mast
cell inhibitor like Nasalcrom to be taken 3-4x daily for life.
This works for asthma also. Monolaurin may help (I take 4 scoops daily) as does bovine
colostrum, if lactose and casein free like 80/40 brand but to kill the virus you need Valtrex. Get the Dr. Johnson protocol. YOU CANT GET
BETTER UNTIL THE VIRAL LOADS GO TO NOT DETECTIBLE."
[NOTE FROM DOMINIE: Comments,
anyone? Dr. Dantini, whom I have reported on in previous newsletters,
successfully uses anti-virals with CFIDS patients. If you have had either
positive or negative experiences with anti-virals, please write me at dombush@bellsouth.net. I have been
using an immune balancing powder for the past 4 years with excellent
results. This month I began an experiment with Lauricidin (anti-viral,
anti-fungal, anti-bacterial pellets), but I have to also stay on the immune
powder or I get sick (this is considered a normal Herxheimer reaction).
However, I have to work and can't afford to be non-functional, so I stay on
the immune powder and take just a tiny bit of Lauricidin to see if it can help
rid me of cold sores, which I seem to get about every 3 months like
clockwork. I would be interested in anyone's experience with
Valtrex. If I recall, I tried it many years ago for chronic cold sores,
but it was very expensive, I wasn't sure it worked and I have lousy
insurance.]
85. CRANIAL
OSTEOPATHY
From a reader--
"A cranio-osteopath here did some really
invasive work on me the very week I no longer could sleep alright
anymore. Cranial osteopathy is usually a gentle discipline and I had
no idea she was going to crack my skull like that – I had gone because of my
sore ribs and hyperventilation. Anyway after a couple of sessions
with her I thought she was looking ill and she charged dearly for just gently
pressing on my spine for 30 minutes after the first visit’s huge big spinal
crack. Also I kept catching her out in fibs – like I asked for a
testimonial from a previous person she told me of with sore ribs and she got all
embarrassed and stuttered she had no testimonial and couldn’t remember the
client’s name. There were a few other little things that set alarm bells
ringing. I later visited another cranio-osteopath in the same
area who said the other osteopath’s partner was dying of cancer so her mind was
most likely not on her job. I am not trying to cast blame....I did
have various other traumas which had set the wheels of sickness into motion,
possibly even high gear but the neck crack was directly before the sleeping
problem."
86.
VIBRA-TRAINING
From a reader--
"Yesterday I did Vibra-Training at a centre 10 minutes away.
It was a really weird sensation. You only do 10 minutes on the
machines with a trainer. It is very cheap too (amazingly). You
adopt various poses and these powerful machines vibrate your body and work all
your muscle groups. The little girl who was my trainer didn’t know
how hard those exercises were for me to do I think she thought me a wimp.
My glasses kept vibrating off my nose, my teeth were jangling in my head, at one
point I couldn’t breathe to talk to her as every ounce of concentration was
going on just staying in the pose until the machine ended that minute of the
session. I was hoping the vibration would “awaken” for want of a
better word my Central Nervous System but in a positive
way. They state it affects the C.N.S. and balances
hormones – I don’t believe anything without some sort of
verification. Well I got out of the session and felt like I was
totally going to puke and then got a hyperventilation bout which I used to get
severely but now are exceptionally rare and I can handle really
well. It is panicking that does HVS breathers harm. By
bedtime I realized something happened last night – for the first time in
I can’t remember how long I felt happy, like a little joy. That
sounds odd but truly real joy has been absent from my life for ages. Could
that session have promoted DHEA? I have no idea – usually I go for
something to help with no expectations which is good because mainly no good
comes. So I’ll give the Vibra a whirl again tomorrow. I
think though that Fibros can possibly experience some sort of relief by trying
something new as if it is going to save them and maybe we just want more than
anything for this to be the great CURE so for a hot 5 seconds we get
happy."
87. GOOD PRESS FOR
CFIDS
From a reader--
88.
BIO-WARFARE
I have been wondering if the FMS/CFIDS epidemic
was caused by bio-warfare experimentation. I read some de-classified
information in the Jacksonville, Florida Times Union newspaper a few years ago
that blew my socks off! As part of a government experiment about 40 years
ago, viruses were dumped on cities from Alaska to Florida to see what would
happen to population groups. At higher concentrations, they could disable
population groups completely without killing them. This is part of
bio-warfare experimentation. If our benevolent government is experimenting
in this way, I wonder what nefarious governments are up to. Since we share
the same atmosphere as the earth turns, we might be making the whole world
sick. I've heard from people with FMS/CFIDS from every continent except
the North and South poles. See my page at www.fms-help.com/mycoplasma.htm and
also The Disabling of a Nation at http://www.rense.com/general38/disabl.htm. Could it be that FMS/CFIDS is caused by a designer virus
targeted to incapacitate the "movers and shakers" (Type A personalities) of a
society??
89. CELIAC
DISEASE, BRAIN DAMAGE & FMS/CFIDS
From a reader--
"I attached this web site http://www.celiac.com/st_prod.html?p_prodid=1066&p_catid=101&sid=91hH9H1FP9tbD1X-53105224829.f3
for you
because I have Celiac Disease and received this information from an email
newsletter I get through www.celiac.com. I've also read in the
past that Celiac Disease is common among FMS/CFS patients." [NOTE
FROM DOMINIE: I had a friend who was first diagnosed with FMS, then with
RA, but was not getting better. Her husband, through researching the net,
discovered that it was celiac disease (gluten intolerance). She is now on
a gluten free diet and has become rail thin, but this is how she manages her
illness.]
90. DO YOU
KNOW A GOOD FMS/CFIDS DOCTOR?
From a reader--
The CF-Alliance offers free Patient-Recommended
Good Doctor Lists for the
USA, Canada and the UK. If you know a good ME,
CFS, FM doctor or clinic
please let us know and we'll add your
recommendation to our current list.
REMEMBER, YOUR RECOMMENDATION COULD
HELP SOMEONE SUFFERING TO FIND THE
MEDICAL HELP THEY NEED. You can make a
difference in someone else's life.
To recommend a good ME, CFS or FM
doctor or to request a
Patient-Recommended Good Doctor List, please mail or
email the CF-Alliance
with your name and USA state or country (if outside of
the USA).
MAIL your doctor recommendation or request
to:
91. ANXIETY
& PANIC ATTACKS IN WOMEN
You might not be a "worry wart" after
all. Anxiety and panic attacks can be caused by hormone
imbalances. See http://tinyurl.com/ae2yf.
92. CORVALEN
(RIBOSE) HELPS SURGEON WITH FMS/CFIDS
From a reader--
93. MIRAPEX - PARKINSON'S MED FOR
FIBRO
From a reader--
Researchers say new findings suggest that the
pain associated with fibromyalgia may be caused by abnormal signal
processing in the brain and central nervous system.
Therefore, targeting how the nervous system sends pain signals
to the brain and then how the brain interprets those messages may offer a new
avenue for fibromyalgia treatment.
Mirapex is part of a class of drugs known as dopamine receptor agonists that
targets this pathway. The drug stimulates the production of the brain
transmitter dopamine and is believed to inhibit sensory responses like pain.
The results appear in the August issue of Arthritis &
Rheumatism.
Researchers say the drug was well-tolerated, and the most common side effects
of the drug were weight loss and nausea. The fibromyalgia patients did not
suffer from hallucinations and sleep attacks commonly reported by people taking
Mirapex for Parkinson's disease.
94.
EFIBRO.COM
New fibro site from a newsletter
reader--
[NOTE FROM DOMINIE: This is
run by the Fibromyalgia & Fatigue Center, but has a posting area for people
who want to discuss FMS.]
95. GABA FOR
ANXIETY & TRYPTOPHAN FOR SLEEP
From a reader--
"I believe
there is an autoimmune element involved in many disease
processes creating various symptoms for each of us from autoimmune thyroid to
CFS and Fibromyalgia. We live in a different world were we consume so many
things that maybe on their own wouldn't cause a problem, but in combo with other
things does. I also believe viruses play a part in all this
too. I was tested for mycoplasma and was treated for that for a
six month period as well as Lyme. My Dr. who is a board certified internist has
really worked with me with the last three years and I am so grateful. One
supplement she put me on which is available by prescription is
Tryptophan and the other I use occasionally for
anxiety is Gaba, which I get from the Pain and
Stress Center www.painstresscenter.com. The
Trytophan is from a compounding pharmacy where they can
actually prescribe you the med and compound it for you. They are 500 mg
each I usually take one at night. It has helped with my depression
and sleep."
96. DR. DEVIN
STARLANYL
A number of years ago, Dr. Devin Starlanyl
wrote a book called Fibromyalgia and Chronic
Myofascial Pain Syndrome: A Survival Manual. It was one of
the first books I had about FMS. Her site is at http://www.sover.net/~devstar - Here's a short quote:
"This site describes two medical conditions which often occur together:
Fibromyalgia and Chronic Myofascial Pain. Chronic Myofascial Pain was
previously called Myofascial Pain Syndrome. These conditions are currently
among the most misdiagnosed of ailments."
97.
REMEDYFIND.COM
Find and/or rate remedies for fibromyalgia,
chronic fatigue syndrome, etc. at www.remedyfind.com.
98.
SPIRITUAL
UPLIFT CORNER
The Mouse Trap
A mouse looked through the crack in the wall to
see the farmer and his wife
open a package. "What food might this contain?"
He was devastated to discover
it was a mousetrap.
Retreating to the
farmyard, the mouse proclaimed the warning. "There is a
mousetrap in the
house! There is a mousetrap in the house!"
The chicken clucked and
scratched, raised her head and said, "Mr. Mouse, I
can tell this is a grave
concern to you, but it is of no consequence to me. I
cannot be bothered by
it."
The mouse turned to the pig and told him, "There is a mousetrap in
the
house."
The pig sympathized, but said, "I am so very sorry, Mr.
Mouse, but there is
nothing I can do about it but pray. Be assured you are in
my prayers."
The mouse turned to the cow. She said, "Wow, Mr. Mouse. I'm
sorry for you,
but it's no skin off my nose."
So, the mouse returned
to the house, head down and dejected, to face the
farmer's mousetrap
alone.
That very night a sound was heard throughout the house -- like the
sound of a
mousetrap catching its prey.
The farmer's wife rushed to
see what was caught. In the darkness, she did
not see it was a venomous snake
whose tail the trap had caught.
The snake bit the farmer's wife. The
farmer rushed her to the hospital, and
she returned home with a fever.
Everyone knows you treat a fever with fresh
chicken soup, so the farmer took
his hatchet to the farmyard for the soup's main
ingredient.
But his
wife's sickness continued, so friends and neighbors came to sit with
her
around the clock. To feed them, the farmer butchered the pig.
The
farmer's wife did not get well; she died. So many people came for
her
funeral, the farmer had the cow slaughtered to provide enough meat for
all of
them.
So, the next time you hear someone is facing a problem
and think it doesn't
concern you, remember -- when one of us is threatened,
we are all at risk.
We are all involved in this journey called life. We
must keep an eye out for
one another and make an extra effort to encourage
one another.
"Bear ye one another's
burdens, and so fulfill the law of Christ." Galatians
6:2
When I was 19
years old, I was going through a very hard trial in my young
life. I found a verse in the Bible that has become the theme of my
life. Now at age 53, it's as true as ever! II Corinthians 1:4: "Who comforteth us in all our tribuation, that
we may be able to comfort them which are in any trouble, by the comfort
wherewith we ourselves are comforted of God." I have
had lots of suffering along the path of life, but also many blessings. In
considering why I spend so much time writing the newsletter and working on my
FMS/CFIDS site www.fms-help.com, I thought of
something Jesus said: "For unto whomsoever
much is given, of him shall be much required." (Luke
12:48). I have become the steward of vast amounts of
information that I feel morally obligated to share, and as long as health
permits, it is my joy to do so! FMS/CFIDS can be a lonely illness. Thank
God for the internet and email where we can share our experiences, joys and
sorrows, with those who understand and care! You might say that my
motto is: "NO FIBROMITE LEFT BEHIND!"
To make my site more personal, I
added two songs that I sing and play on a digital piano. I like soothing,
inspiring, calming, faith-building, edifying, and peaceful music, because I
need all those things in my life! Here they are:
99.
DOMINIE'S PERSONAL UPDATE
Whew! August was a busy month with my
student's annual music recital. I tend to get overly stressed out when
preparing for these events. My husband is very supportive, patient
and helpful, and I really appreciate him for that! Donnie is the
photographer for my recitals, so has seen me go through my
panic-stricken preparations many times now...I guess he's gotten used to
it. Normally, my health takes a beating from the stress of preparation,
but this year I did fine, thanks to a lot of prayer that Donnie requested for me
from various people.
The recital turned out to be a wonderful
success with 27 students (ages 5 through 70) performing on piano, guitar,
autoharp, accordian and harmonica, as well as some vocals. My
students are just average folks.
It blesses my heart in this day and age of CD players and Ipods to see
people willing to put forth the effort to learn to play an
instrument.
A reception followed with lots of food and
everyone seemed very happy with the program. I thank God for health and
strength (just enough....and with great effort) to keep teaching and also
play the piano for church. Having a chronic invisible illness is tough
because people don't understand that you may not feel well. I try
to explain FMS/CFIDS so that people understand my limitations and
that I'm not being a slacker when I have to say NO to things.
I am thankful for various helps I've found over
the years that enable me to keep my strength up and the pain down - see www.fms-help.com/what.htm for a
current list of what's working for me.
The cherry on top of the ice
cream was at church this weekend when a small group of
instrumentalists joined me in a special we performed. I played the piano
and sang, along with an older man with a beautiful tenor voice.
Our little "orchestra" had two autoharps, an accordian and an
Omnichord! It was SOOOO MUCH FUN!!!!!!!! We've got to do this
again!!!! Thank God for the happy times in life.....there is always enough
sadness and trouble to go around.
I wish you a good month, and may God bless you as you live for
Him.
Your fibro friend,
Dominie Bush
II Corinthians
1: 4 - "[God] 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.
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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME
HOMEPAGE