DOMINIE'S NEWSLETTER
AUGUST
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.
Scroll
down to read all 70 articles...short but interesting!
1. LETTERS FROM
READERS
2. LIST OF FMS SUPPORT
GROUPS
3. DENTAL ANESTHETICS
& FIBRO
4. REMEDIES FOR INSOMNIA
RATED
5. PROVIGIL & BIRTH
CONTROL PILLS
6. MAIL ORDER
PHARMACIES
7. EXERCISE &
FIBRO
8. NASTY PHARMACIST
(revisited)
9. MORE ON PROVIGIL
10. BRAS
(revisited)
11. IS SPLENDA
SAFE?
12. FMS/CFIDS &
SMOKE SENSITIVITY
13. SIMPLE DEFINITION OF
FIBROMYALGIA
14. FIBRO & ANA
POSITIVE
15. GENETICS &
FIBRO
16. MILLION LETTER
CAMPAIGN UPDATE
17. CYMBALTA
(revisited)
18. SENSITIVITY TO
SOUNDS
19. READER DOING
BETTER
20. THYROID UP AND
DOWN
21. LYME, STRESS &
FMS
22. GOOD DOCTORS / BAD
DOCTORS
23. TRAUMA CAUSES
FIBROMYALGIA
24. VIRUSES & CHRONIC
FATIGUE SYNDROME
25. RIFE
TECHNOLOGY
26.
ELECTROTHERAPY
27. SUGAR, FLOUR &
FMS
28. SUPPORTIVE SPOUSE
29. WEIRD
FEELINGS
30. FROZEN
SHOULDER
31. SKIN OFFERS CLUES TO
CFS
32. SUPPLEMENTS WILL BE
BANNED OR LIMITED
33. MYCOPLASMAS &
ANTIBIOTICS
34. CFS PATIENTS HAVE
BRAIN DEFECT LIKE AIDS DEMENTIA
35. VIOXX ALTERNATIVE
FROM A DOCTOR
36. FIBROMYALGIA BUMPER
STICKER?
37. HEART PROBLEM LINKED
TO CFS
38. HUNTINGTON'S DISEASE
& CFS - GENETIC PROFILING
39. HOT
FLASHES
40. ADVICE ON APPLYING
FOR DISABILITY
41. HEALING CHRONIC
ILLNESS AT HOME
42. INSOMNIA
NEWSLETTER
43. LUNESTA
(revisited)
44. MYALGIC
ENCEPHALOMYELITIS (M.E.)
45. SEX &
FIBROMYALGIA (revisited)
46. XYREM
(revisited)
47. LEVAQUIN DESTROYED
SLEEP FUNCTION
48. LOW DOSE
NALTREXONE
49. SEVERE STRESS CAN CAUSE
FIBRO
50. OVERDOSED
AMERICA
51. DRUG
SAFETY
52. PROTECT YOUR RIGHT TO
USE SUPPLEMENTS
53. FLU SHOT &
FIBROMYALGIA?
54. WOMEN FEEL MORE
PAIN THAN MEN?
55. SAFE
BEEF
56. KAY WALKER'S
STORY
57. LAURICIDIN
(revisited)
58. CO-Q-10 FOR
CFIDS
59. SYNTHOVIAL
7
60. ELECTROMAGNETIC
FIELDS INTERFERE WITH SLEEP
61. HILLIE'S CFS
STORY
62. VISUAL CONTRAST
SENSITIVITY TEST
63. DR. TEITELBAUM'S
PROTOCOL
64. ADRENAL GLANDS
(revisited)
65. FIBROMYALGIA FREEDOM
HOUSE HELPING UNIV. OF WASHINGTON
66. PAXIL
DANGERS
67. READER WITH POST
POLIO SYNDROME
68. DANGEROUS
DRUGS
69. SPIRITUAL UPLIFT
CORNER
70. DOMINIE'S PERSONAL
UPDATE
1. LETTERS
FROM READERS
"I found your site www.fms-help.com the other day and was very impressed by the thorough research you
have done and the wealth of information you provide! Thank
you!"
"Your web page is a HUGE inspiration to
me."
"I love your website!!!!!"
"I have been searching the internet for hours
for help with my FM/CFS. I am so glad I found your website www.fms-help.com!! It has helped me tremendously. I am 3 years into this
and just now getting a diagnosis of FM/CFS. Tried Neurontin for one week
until I realized being a zombie for the rest of my life was not the
answer."
"THANK YOU FOR YOUR WEBSITE AND ALL THE MOST
VALUABLE AND IMPORTANT INFORMATION I'VE EVER READ. YOU ARE TRULY PRICELESS
AND AM SO GLAD TO HAVE FOUND YOUR WEBSITE!!! YOU HAVE SAVED MY LIFE
LITERALLY WITH HOPE AND INSPIRATION AND ALL OF YOUR HARD WORK. I REALLY
MEAN.......I HAD PURCHASED GARAGE ENCLOSURE STUFF TO FIT ON THE PIPE OF MY
CAR AND I WON'T GO ON, BUT I'M SURE YOU UNDERSTAND THE
REST. YOUR HARD WORK CHANGED MY FEELINGS TO THE POINT THAT I WOULD
NEVER ATTEMPT THAT AGAIN! I WILL ALWAYS BE GRATEFUL TO YOU FOR OPENING MY
EYES TO 'HOPE' AND NOT DESPAIR!" [NOTE FROM DOMINIE: See
www.fms-help.com/suicide.htm.]
"Your site is
really really great!"
"I'm 45 and finally diagnosed with
fibromyalgia. I refused to believe that I had it for years, even when my
chiropractor told me I had all the signs. It was 'just stress,' 'my
mattress,' etc. The doctor gave me a prescription for Trazadone, which I
DON'T want to start taking. I am now going to attack this problem.
After reading up on it for a day and feeling overwhelmed and depressed about it,
I came across your site www.fms-help.com. I love it! After
reading some of your story and tips, I feel somewhat positive for the
first time in a long time. I think you ought to write a
book. With all the info and research you have, plus your positive outlook,
it would be a great help to a lot of people!"
"You're the only thing that has stayed the
same. My medication and my doctors have changed in the past two
years. But when I want to find out about fibro, I email you. Soon to
find my answer is on it way, either from you or one of your readers. Thank you
again."
"I must compliment you on your wonderful
website about FMS and CFS. I have struggled with the overwhelming majority
of the symptoms that you describe in your articles."
"If
nothing else, having fibromyalgia has taught me a few lessons, mostly out of
necessity. I can no longer multi-task, and so end up going through the day
at a pace I can handle with the fibro...the slower I go, the better I deal
!!! The Rat Race is no place for
fibros!!!!"
2. LIST OF FMS
SUPPORT GROUPS
From a reader--
Here is a list of FMS support groups for the
U.S., Canada and the U.K. If your group is not listed, you can add your
information--
3. DENTAL
ANESTHETICS & FIBRO
From a reader--
"I am in the process oft having all my amalgam
fillings removed and I have suddenly become allergic to the only local
anesthetic (citanest) that originally was tested okay for me, I became terribly
ill. I think persons with fibro and weakened immune
systems should be very careful which anesthetic is given to them during
dental treatments.
4. REMEDIES
FOR INSOMNIA RATED
This is a HUGE list of sleep remedies and you
can add your own ratings to these meds and supplements--
5. PROVIGIL
& BIRTH CONTROL PILLS
From a reader--
"I was reading about Provigil for fatigue in
the June newsletter www.fms-help.com/June2005.htm. I have
tried this from a Dr. at a pain clinic--he stated some women were in fact
feeling much better taking it and gave me some samples. Once I got home I read
the pamplet inside the boxes, and it plainly states that it can
interfere with birth control pills if you are on them so use a backup
method. This made me nervous given the fact we have 2 wonderful young
daughters, but I am clearly at my limit esp. with my fibro. I just wanted
other young women to have this info. I didn't notice it mentioned. I haven't
taken it much, given my fear of yet another little minx running around. It did
seem to pep up my energy for a few hours though."
6. MAIL
ORDER PHARMACIES
Pharmacy by Mail
and also this one from a reader--
"One good prescription assistance program is
RxOutreach http://www.rxoutreach.com/en/ They
have a list of drugs that you can get 3 months for $18, or 6 months for $30. The
6 months is the best savings. Have MD right out prescription for 6 months,
explaining the savings involved in doing so. Anyways, it is super easy and super
quick to sign up and get the meds you can get. It is all generics and the list
is not extremely long or varied, many are drugs that are low cost drugs to start
with, but the list seems to be growing each month, and any money saved is
worth it, me I will save about $100 by doing it this way, and it was very
simple...Almost every assistance program has denied me cause while I have been
out of work 9 months and still no disability money, many of them say I am not
poor enough,lol,they are only given to people who are down and out times
1,000,lol. Many you cannot have any insurance or any drug coverage whatsoever,
and other strict rules. RxOutreach is different. This one is entirely based on
income and no other factors. They have income guidelines for family of 1, 2, 3,
and so on. They are reasonable guidelines too, not crazy ones. Anyways, it's
legit, and I got 4 meds from them."
7. EXERCISE
& FIBRO
From a reader--
"WebMD with AOL Health - Being Active Won't Worsen
Fibromyalgia Dominie - What they don't explain
here is how if we do some kind of activity, we have to go to bed afterwards....
Today my mother was here to visit me, and after she left I couldn't get out of
bed for hours, and it may affect me for days to come. Articles like this
make me so angry--they give the public a wrong impression of what it's like to
have this disease! Maybe we have to start writing our own articles for
publication in major magazines and newspapers?"
[NOTE FROM DOMINIE: I agree
100%. Back in the 1980's when my FMS was at its worst
www.fms-help.com/fibro.htm, even any small physical activity, such as playing the piano,
putting dishes away or writing a letter---would cause days or even weeks of
excruciating pain. Now that I am doing better, this is no longer the case,
but at that time doctors were telling me that I was de-conditioned and needed to
exercise more....like....right! The only people who understand this
illness are those who have it....]
8. NASTY
PHARMACIST (revisited)
From a reader--
"In your June newsletter www.fms-help.com/June2005.htm is a thing
on a Nasty Pharmacist story...and the writer mentioned how you are only suppose
to fill your prescriptions at one pharmacy...I never signed any such medicine
agreement...Is this implied? Is this typical? Again I never signed one...and I
take control substances...And I do multiple pharmacies, usually mail order
(which even will do a 3 months Vicodin supply), and retail pharmacy pick up at
grocery store for Oxycontin and Adderral and anything new and/or short
term...but sometimes I do another grocery store, and I have done the $25 gift
card thing at other drug stores several times to get the free $...but no one
ever said to me I can only do one pharmacy??"
9. MORE ON
PROVIGIL
Another comment from a reader--
"My doctor took my of Provigil cause he felt it
was not working well enough and doing the trick he hoped it would do for me. He
started me on Adderal instead to try to help with
fatigue/energy."
10. BRAS
(revisited)
"Your stuff on bras was hilarous. And goodness,
I will be honest, I am so darn sick, fatigued, and in pain, I wear no bra
practically half of the time, not just no bra while at home, but no
bra to the store, to the doctor's, wherever. No shame and I never even
second guess it. Often I even forget I am braless, it is the last thing on
my mind. All that matters is comfort and pain management, if that
means no bra, then I don't hesistate for a sec."
11. IS SPLENDA
SAFE?
12. FMS/CFIDS
& SMOKE SENSITIVITY
From a newsletter reader--
"I sublet an apartment....little did I expect
that the apartment below me would have a smoker. This was extremely aggrevating.
Most people with chronic fatigue and fibromyalgia are sensitive to
smoke. Ballparks do not allow smoking anymore in the seats.
Hotels have special smoking rooms. Yet all apartment complexes around the
country allow it. Think how much havoc this is for people. Especially us who are
sensitive....I feel there is a need to have at least a certain percentage of
apartment complexes to be smoke free. This would improve the
quality of life for the people who are sensitive incredibly. Perhaps we
can do something to raise our voice and have some smoke free
apartments. This would benefit those who need it greatly and this would
not in any way inhibit smokers rights. There would be plenty of complexes that
would have smoking as perfectly fine. Why not raise our voices to be heard
about this most important matter? I wonder if we could somehow take it even
further and encourage a '2x2 for a healthier me and you' where each person could
be encouraged to write two letters and tell two people. Perhaps to a news
publication or a representative or both. Imagine if 1,000 people
participated the impact this could have and how much happier and healthier
apartment complexes could be."
[NOTE FROM DOMINIE: Not to
mention that smokers can cause fires by falling asleep in bed with lighted
cigarettes. Also, when they move out, their apartments are smelly and
yellowed, which requires more cleaning and preparation for a new tenant.
Seems landlords could give discounts to non-smokers!]
Comments from another reader--
"It is a real good thing to be concerned about.
We tried renting to non smokers with our units. The problem is some tenants lie
and they smoke anyway. Then if you leave an apartment empty because you can not
find a non smoker you end up paying the mortgage on that unit. It seems easier
than it is. A landlord does not want to lose a good paying tenant because they
smoke. It may even fall under discrimination, but I am not sure. We usually
advertise no pets and no smoking. It is easier to get those without pets.
A voice from experience!"
13. SIMPLE
DEFINITION OF FIBROMYALGIA
From a reader--
"I read this definition of FMS today (from
a nurse who has it) and thought it was a great, simple
explanation--
'Fibromyalgia is a
chronic cellular disorder that causes pain and prevents energy production in the
cells.'
So much easier than trying to explain symptoms
(most people don't care anyway - we all have our aches and pains to deal with),
or telling people you are tired and in pain and then they often say, 'I'm
tired and have pain a lot too so maybe I have FMS.' Plus saying it's a 'cellular
disorder' explains that it's something that happens inside the body so maybe
will avert some of the 'but you look OK!' comments."
14. FIBRO
& ANA POSITIVE
From a reader--
Here are a couple of articles about fibro and
positive ANA. I've often wondered if the two go hand in hand as I've had
both since the mid 1980's.
Original article
Please note that the ANA Titer they refer is
reported differently now than in prior studies. Here are the basics on the ANA
Titer:
15. GENETICS
& FIBRO
From a reader--
"I'm 51 and can trace symptoms back to birth
and have had a lifetime of
virtually every fibro-related symptom. In
reviewing the health of family -
fibro symptoms appear to be a theme -
receiving 'band aid' treatments. My
personal experience is that this
is a genetic disorder and for me, at least,
present at birth."
16. MILLION
LETTER CAMPAIGN UPDATE
On May 1, 2005 thousands of FMS/CFIDS sufferers
and their families wrote to media outlets about our illness in an effort to
raise awareness. I continue to post responses to this effort at www.fms-help.com/letter.htm Thanks
to all who wrote letters to help our voices be heard!
17. CYMBALTA
(revisited)
More comments from readers--
1. "I've been on Cymbalta for four
months. I don't know what I feel anymore. Loss of memory for one
thing, disoriented, light headed. It isn't helping my
Fibro."
2. "I no longer take cod liver oil gel tablets.
They weren't working well with the Mobic I take for pain and causing
problems. I joined Curves for Women instead and got put on Cymbalta and
things are so much better now."
3. "I took Cymbalta for only one day and
I almost lost my mind. I couldn't control anything mind wise, movement
wise, etc. I was one of the worst days I have ever gone thru. I
definitely will not ever take another Cymbalta."
4. "I've been taking it for about four
months and its not doing anything. So far I don't have any of those other
horrible side effects I read about from your other readers."
5. "I take Cymbalta which is supposed to
help with the pain, but no results for me."
18.
SENSITIVITY TO SOUNDS
From a reader who found this on the
net--
"Fibro causes changes in your sensory system.
People With Fibro (PWF) are often sensitive
to light, smells, sounds, odors, pressure on the body, and even some forms of
simple vibration. Changes in their environment is quickly noticed by people with
these sensitivities. I've had many PWF, tell me the noise emitted by fluorescent
lights just drive then crazy. Sleep (or the lack of...) plays a crucial
role in PWF. PWF often sleep, but due to the pain, wake up exhausted. PWF often
have the alpha-delta sleep anomaly. As soon as we reach that deep delta level
sleep, alpha waves (awake) intrude and either jolt us to an awakening or to a
lighter stage of sleep. Our body heals and many neurotransmitters are restored
during delta sleep, so we soon suffer from the effects of sleep
deprivation."
19. READER
DOING BETTER
"With so many suffering so much, I hesitate to
tell that
I am doing so very well, compared to the past. I
now
never have bad pain, just mild pain that goes away. I
seldom
have IBS; my insomnia nights are only two or
three a month.
What am I doing? I am not sure what is
helping. I take
10 mg. of amitriptyline each night, with another 10
mg.
and a cup of Sleepy Time tea if I am awake after half
an hour. I
use 1/4 tsp. of natural progesterone
cream, divided into two times,
each day. And I am
taking magnesium with my calcium for osteoporosis.
I
understand that magnesium is a relaxant.
I must add that I am even growing
fingernails, again,
after several years of nails that shredded and
broke
before they reached the end of my fingers! I hope that
this
can help somone."
20. THYROID UP
AND DOWN
From a reader--
"I'm having a
terrible time right now. I went to a physiatrist/rehab doctor who doubled
my Synthroid (I have Hashimoto's) to help with my fibro symptoms. Well, he
overshot how much I should have been getting, as I was also coming off of
Cymbalta. Initially I felt great, but now I am now hyperthyroid, with much
anxiety and depression at the same time. I went back to my internist, who
is having me stop my Synthroid for a week. I feel horrible. I think
I may need to go back on antidepressants, and am having to wait for a month to
see a new psychiatrist, who is very good..... If you know of any others who have
experienced this issue with the thyroid being up and down, would you let me
know?"
21. LYME, STRESS &
FMS
From a
reader--
"Was bit by a
tick...ended up 10 days in the hospital diagnosed with
meningitis--lyme as we know now. Never was well
again. My ex did leave to cheat when I got sick. After we
divorced, he stalked me for years. Sure that didn't help. I was
in constant terror. Most everyone I did a work up on in three
years at the clinic had some long term stress in their lives,
but also felt as child they had signs such as growing pains(?),
many sore throats (more than norm). I saw
hundreds of patients. All the test studies I offered to put my body
through--including an herbal study that almost did me in or put me in the funny
farm--it is way too sad....I'm in a huge flare now for pushing too hard.
No sleep, UGH. Most lymies think FMS is lyme or
a co-infection thereof, including the Bowen labs in
Florida."
22. GOOD
DOCTORS / BAD DOCTORS
From a reader--
"I went to your website and checked out the
doctors section you now have www.fms-help.com/doctors.htm - I was
sitting here crying reading them because they hit so close to home. Five years
ago I started having difficulty sleeping, I was always dreaming
that I was running from someone or something who was chasing me but I
couldn't see them. I would wake up so groggy. About the same time, I had
to quit going to my much loved Karate classes because I would get so
fatigued and out of breath, and that was just 15 minutes into
the class. My joints and muscles started getting so painful
that I just couldn't do it any more.
So, I went to my doctor of about 15 years and
started to tell him what was happening. He did all sorts of tests they all came
back negative. Except for my Epstein Barr. It was abnormal. I had to go back
into him several times before he finally placed me on disability because I was
no longer able to get to work and function in the way they needed me to....This
went on for about three months and finally my doctor said I think you can back
to work now. Without caring if I was up to it or not. I was lucky, I started out
the first month slowly, just 4 hours a day, and then built up from
there.
I was doing great until September of 2003 when
at the same time extreme stress from a manager at my work place and a death of a
nephew threw me into a spiral I could not come out of. I continued to work until
March of 2004, the stress unbearable at this time. But in January I had already
started seeing the signs of the terrible illness from 5 years ago resurfacing. I
had a breakdown at work, and had to leave. I went to the same doctor now
for 20 years and I was placed on disabilty for chronic fatigue,
fibromyalgia and major depression.
My world has been a nightmare ever
since, I am still on disability and my doctor has done every test he
can think of with no real results. He has been very rude to me
since, even stating in a subtle manner that I may be faking
this. I have gone out of his office so many times crying. He says he thinks I
can work after I have just sat there and told him how badly I still feel.
He keeps saying "exercise, exercise, exercise" but how do you
do this when you can't function. I have tried vitamins, doing more things around
the house (which sets me out for a few days afterward). One of the office
visits, he made a point to take me out of the exam room and scold
me in front of the receptionist and other workers. I was so
embarrassed. He is a great doctor, has won many awards but is frustrated at
trying to find an answer.
Finally, I referred myself to a clinic for
a complete physical. All findings were negative. I was referred to a
neurologist that had me do a sleep study. I told him I had had one
done before when I was ill and everything came back okay. I even tried a c-pap
machine at home but that only made me sleep worse. He told me there is a test
now that can be done the same time as the study to see if someone has
fibromyalgia. The test showed that I had 71 unexplained arousals which
somehow detect that alpha intrusions are affecting my deep
sleep and causing me to have no rested sleep.
I took these findings to my doctor at home. He
didn't even look at them and didn't really care to listen to me explain.
All he wants is to get me out of his office telling me, 'I don't know how you
feel because I don't have your illness.' Like I really want to be
there!!!
I really feel for all who have to put up with
Doctors like this. Maybe the Million Letter campaign in May www.fms-help.com/letter.htm will
help this nightmare come to an end for all of us."
23. TRAUMA
CAUSES FIBROMYALGIA
From a reader--
"We saw on your site that many sufferers write
that there
is no clinical proof that trauma causes fibromyalgia. Mark
J.
Pellegrino, MD, is board certified in physical medicine
and
rehabilitation and electrodiagnostic medicine and is one of the
nation's
leading experts in fibromyalgia. He is the author of numerous
books and
articles on fibromyalgia and suffers from fibromyalgia himself
and
maintains an active medical practice with over 15,000 patients
cared
for. He is located in Ohio. In his latest book,
'Fibromyalgia: Up
Close And
Personal,' he devotes chapter 30 entirely to post-traumatic
fibromyalgia which is caused by
trauma. There he states the various
traumas that he believes cause
fibromyalgia. We are using his book for
ammunition in our
disability fight and hope to get to an
appointment with him. The
book is what fibros are, all the way to
what makes things happen to us as fibros.
The book is published by
Anadem and should be available at your local Barnes
and Noble bookstore."
24. VIRUSES
& CHRONIC FATIGUE SYNDROME
From a reader--
"Due in part to its similarity to chronic
mononucleosis, CFS was initially thought to be caused by a virus infection, most
probably Epstein-Barr virus (EBV) . It now seems clear that CFS cannot be caused
exclusively by EBV or by any single recognized infectious disease agent. No firm
association between infection with any known human pathogen and CFS has been
established. CDC's four-city surveillance study found no association between CFS
and infection by a wide variety of human pathogens, including EBV, human
retroviruses, human herpesvirus 6, enteroviruses, rubella, Candida albicans, and
more recently bornaviruses and Mycoplasma. Taken together, these studies suggest
that among identified human pathogens, there appears to be no causal
relationship for CFS. However, the possibility remains that CFS may have
multiple causes leading to a common endpoint, in which case some viruses or
other infectious agents might have a contributory role for a subset of CFS
cases."
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25. RIFE
TECHNOLOGY
From a reader--
"It has
been rediscovered that most every microbe (one
cell organism, bacteria,
fungus, and virus) has at least one
ultrasound frequency which can destroy
the microbe easily."
26.
ELECTROTHERAPY
From a reader--
These Brain Waves May
Tame Fibromyalgia
This technique is gaining wide acceptance at
chronic pain treatment centers," says Lichtbroun, assistant professor at Robert
Wood Johnson Medical School, in East Brunswick, N.J. "At first I looked at this
device very skeptically -- and even now I am beginning to see some patients who
had a marked response at the beginning are gradually beginning to deteriorate --
so again I wondered if the machine had lost its power. But what I've found is
that patients eventually lose their incentive to use the machine, and less
frequent use appears to mean a return of symptoms."
The machine Lichtbroun refers to is the
Alpha-Stim CES device made by Electromedical Products International Inc., of
Mineral Wells, Texas. Patients using the device clip electrodes to their
earlobes, which transmit low levels of electricity back and forth, through the
head.
Both groups were told to use the devices for an
hour a day for three weeks.
For therapeutic use, patients are taught how to
use the devices so that "they can undergo the treatment in their own homes, at a
time that is convenient for them," says Lichtbroun. That's a big advantage over
some other approaches, such as massage, because it doesn't require "special
appointments or a trip outside the home," he points out.
The results of the electrotherapy
treatment were "very surprising," says Lichtbroun.
Physicians determine how severe a case of
fibromyalgia is by testing "tender points" -- areas of highly localized pain.
The study participants who had real electrotherapy treatment had a 28%
improvement in tender-point scores and a 27% improvement in the amount of
general pain they felt.
But most surprising, says Lichtbroun, was that
only 5% of the treated patients reported having sleep disturbances after
treatment, compared with 60% who had sleep problems before beginning
electrotherapy treatments.
And 90% of the treated patients reported that
their quality of life had improved as a result of treatment, while 20% of the
patients who were in the fake treatment group said their quality of life had
declined.
These results are almost too good, says Robert S.
Katz, MD.
27. SUGAR,
FLOUR & FMS
From a reader--
"I do good as long as I lay off the flour and
sugars (sweets, cold drinks, etc.); the bacteria, fungus, and yeast does not
build up as bad; I also use some Seagate products; more as money permits (pro
biotics, olive leaf extract, etc.)"
28.
SUPPORTIVE SPOUSE
From a
reader--
"I've been
reading your newsletter for more than a year now. I was very sick with fms last
year and had a flare that lasted nearly a year. I've had fms for about 10
years but was diagnosed only 3 years ago. nothing seemed to work..I tried so
many different drugs and supplements that the list drags on and on. I finally
found a combination of remedies that has worked wonders. I feel
like my symptoms have improved by 80%. Acupuncture, immune shake, malic
acid, co-q10, massage therapy, psychotherapy, a whole foods diet (fresh, organic
meats and lots of veggies and whole grains), wellbutrin 300mgs, hot water
bottle, and getting out of an unhealthy relationship is
what works for me. You are so correct when you say we need supportive men.
My ex used to blame me for my illness and thought I was
exaggerating it to avoid meeting up with friends. He didn't
understand how tired I was. He showed no empathy when
I had trouble carrying groceries up the stairs to our apt. I did not feel good
enough about myself to stand up to him. I also believed him because he had
been so caring in other ways! Now that I have my depression and symptoms
under control, I have so much more self-confidence. I can finally stand up for
myself and tell him to shove it. Having a supportive partner is absolutely
vital. Despite all my stress from teaching school, having financial
trouble, etc., my symptoms have not returned to the severity they were
last year. And I believe a lot of that has to do with being out of that
relationship. Please tell your readers...don't ever let anyone bring you
down and blame you for having a chronic illness. Don't ever give up..we
can all find the right combination of therapies to help us live a more normal
life. Thank you for maintaining such a great resource of information for
an illness that is so mysterious and misunderstood."
29. WEIRD
FEELINGS
A reader found this on the net--
"Mold alters brain function. When someone wants
to enter an altered state, they try to alter brain function. Drugs or alcohol
will do this, or certain practices (e.g. hyperventilation). I refer to molds as
psychoactive. If I get real bad, I call the local mental health hot line the
next day to see if they had a lot of calls. Many times their phone rang off the
wall while I was feeling weird. You can stop an allergic reaction by
alkalinizing the bloodstream. When you are feeling weird, or have a
sudden attack of weakness or achiness or your brain shuts down, take 1/2
teaspoon baking soda in water. Works in 5 minutes. Better yet, take 2
drops citricidal or citrus seed extract in water (tastes awful) . Works in 90
seconds. Or chew citrus peel."
30. FROZEN
SHOULDER
A reader needs advice--
"I am still having problems with frozen
shoulder. My range of motion is only about 45% in my left arm, it's been 9
months. We don't realize how lucky we are to have be able to reach above our
head or wash our hair, I just consider myself lucky to have two
arms."
[NOTE FROM DOMINIE: If you
have been suggestions, please reply directly to Mary at DMH22@webtv.net.]
31.
SKIN OFFERS CLUES TO CFS
From a reader--
"Researchers say the results suggest that despite
sharing similar symptoms with depression, people with CFS can be identified by
physiological measures: skin temperature and electrical activity within the
skin. They also say the study adds to the growing body of evidence that
demonstrates that CFS and depression are distinct disorders with different
disease profiles."
32.
SUPPLEMENTS WILL BE BANNED OR LIMITED
From a reader--
"For those not familiar with the Dietary
Supplement Health and Education Act of 1994, it was passed because 2.5 million
ordinary citizens wanted to make sure dietary supplements such as herbs,
vitamins, minerals and other food-based supplements could stay on the
over-the-counter market. Movement to create this law, known as DSHEA, started
when a 1992 FDA task force published a report announcing the FDA’s desire to
remove these products from the shelves as they represented a 'disincentive for
patented drug research'. Immediately following this announcement, millions
of Americans learned about how famed vitamin doctor, Jonathan Wright’s
patient-filled medical office was raided the same month by nearly two-dozen
gun-toting, flak-jacketed FDA agents in the name of regulating supplements.
Battering down an unlocked office door, these agents, backed by burly sheriff’s
department deputies, lined up staff and patients against the wall, pulled IVs
from patients arms in middle of treatments, confiscated patient records, took
the hard drive from the office computer all because Dr. Jonathan Wright was
using nutritional supplements to heal very sick people who could not get help
from standard allopathic medical care. As the story developed, it turned out
that this Gestapo-style raid was standard operating procedure for the FDA and as
the general public became aware of just how many doctors’ offices, manufacturing
companies, distributors and health food stores had been assaulted by similar
raids, the horror of all this forged a mighty health freedom army that resulted
in unanimous passage of DSHEA."
[NOTE FROM DOMINIE: A similar raid
was conducted at the Seasilver manufacturing facility in California about 2
years ago, where 750 employees were forced out and the company was taken over
for several months.]
This link also came from a
reader--
The features of Codex Alimentaris are:
-
No supplements can be sold for
preventative or therapeutic use.
-
Any potency higher than RDA levels
(pathetically low) is a drug that requires a prescription and must be produced
by drug companies.
-
Codex regulations are binding internationally
-
New supplements are banned unless given Codex
testing and approval (certain to expensive and lacking in scientific merit).
Norway and Germany are already operating under the new Codex regulations.
The price of zinc tablets has gone from $4 to
$52. Echinacea has risen from $14 to $153.
-
Codex regulations are not based on science or
research findings. These regulations were developed by 11 appointed persons.
Guess who appointed them?
And here's another website sent in by a
reader--
33.
MYCOPLASMAS & ANTIBIOTICS
From a reader--
"In the past month I have hit rock bottom with
my chronic fatigue. I have decided to forget about school for another
semester. I expressed my desperation to my mother who has been helping me
with health research. She decided to talk to a very knowledgeable
pharmacist in town. It turns out that he's had fibromyalgia for 30 years
and is now healthy and well. He said that he took Tetracycline, an antibiotic, for his mycoplasma
infection. He absolutely believes that mycoplasmas are a
factor in chronic fatigue, rheumatism, fibromyalgia etc. He also
asserts that the reason that the doctors don't acknowledge this is because
it is against their whole belief system and there is no money in it so the
pharmaceutical company's don't want them to know about it...that it's so easy to
treat! Money and power corrupts!!! He has referred us to a very good
web site: http://www.roadback.org/index.cfm/fuseaction/home.main.html This web site talks about treating rheumatic diseases
with antibiotics including fibromyalgia. Check it out! He said
that he suggests a low dosage of tetracycline for
about a years time. There's more good
news. I have more energy and I think it is due to the coconut
oil. I'm taking 3 tablespoons per day. Also I've recently
had an infection in my mouth. An infection of a gland, I believe.
Very painful! I started taking Clindamycin for the infection
and am feeling better. There's more!! My stomach is feeling
amazing!! The Clindamycin is taking care of my candida problem and the
only thing that could explain that is that it's taking care of the
mycoplasmas. I also read about a man who took
Azithromycin for a sinus infection and he had either chronic
fatigue or fibro....can't remember. He said that it didn't take care of
his sinus infection but he said that his bowel problems improved greatly.
How exciting I could be onto something
here!!"
34. CFS PATIENTS HAVE BRAIN
DEFECT LIKE AIDS DEMENTIA
From a reader--
"Over several years'
investigation, Dr. Mena has consistently reported that 71 percent of CFS
patients have a diminished flow of blood in their brains."
35. VIOXX
ALTERNATIVE FROM A DOCTOR
From a reader who got this letter from a
doctor--
"As you have probably already heard, the
prescription arthritis medication Vioxx was recalled last week after new data
showed that patients who took it continually for 18 months or longer had a
significantly higher risk of developing deadly cardiovascular problems,
including heart attack and stroke.
I have to admit, I'm not entirely
surprised by this news. I've long known that these types of COX-2 inhibitors
cause side effects worse than the pain you are trying to relieve! In fact, I've
found that most conventional medications -- both prescription and
over-the-counter -- don't address the underlying causes of arthritis. And, they
have been shown to damage the digestive tract, kidneys, liver, and may actually
hasten the destruction of cartilage by suppressing the creation of new cells.
Of course, with the newest information that's emerged about Vioxx, there's
no better time than NOW to abandon dangerous conventional treatment and examine
how natural remedies can treat arthritis safely and effectively.
Naturally Heal Aching
Joints
To keep your joints healthy, fight
inflammation, and rebuild cartilage, I suggest supplementing with the following
nutrients daily:
* 1 teaspoon of MSM
(methylsulfonylmethane) granules once or twice a day with meals. MSM is a
potent antacid, analgesic, and anti-inflammatory derived from foods. It actually
increases blood flow and delivers nutrients to injured cartilage tissues and is
helpful in improving your range of motion.
* 600-1,000 mg buffered
vitamin C helps form collagen in your connective tissue. Take this together
with 400-800 IU vitamin E, as d-alpha tocopherol, and 5,000 IU vitamin
A, as beta carotene. This antioxidant trio will help to slow down the
erosion of cartilage and stimulate the formation of new cartilage.
* 400
IU of vitamin D slows down the progression of osteoarthritis.
*
1,000-1,500 mg daily of glucosamine sulfate stimulates the manufacture of
the chains of sugars, amino acids, and sulfur that are critical to joint
movement, and help to restore the gel-like nature of cartilage.
* 1-2
tablespoons of flaxseed oil or 4-6 tablespoons ground flaxseed, can provide
you with important omega-3 fatty acids, which are converted in the body to
beneficial anti-inflammatory prostaglandins (chemicals produced by your body
that either cause or block inflammation).
* 600 mg of White Willow Bark
extract helps relieve the aches and pains of arthritis.
* 4 mg of
polygonum cuspidatum extract helps promote normal inflammatory response, and
may help ease the wear and tear of cartilage.
Please feel free to pass this
important information on to friends and loved ones who live with arthritis or
have been using Vioxx to relieve their symptoms."
36.
FIBROMYALGIA BUMPER STICKER
A reader would like to know if there is a
well-designed fibromyalgia bumper sticker available. If you have the web
address for one, please write me at dombush@bellsouth.net and I will share
the info in the next newsletter.
37. HEART
PROBLEM LINKED TO CFS
"Many people
with Chronic Fatigue Syndrome may have a serious heart
problem. A new finding
hints that blood circulation problems may be an
underlying cause of the
mysterious illness.
Nobody is sure what causes Chronic Fatigue Syndrome.
As more becomes
known, it's likely that some chronic fatigue patients will
turn out to
have different underlying problems than others. One major
symptom,
however, is feeling bad after exercise for more than 24
hours.
To Arnold Peckerman, M.D., that sounds a lot like a blood
circulation
problem seen in some heart patients. These patients have
something
called left ventricular dysfunction, in which the main pumping
chamber
of the heart is weak. When you exercise, your heart pumps out
more
blood. But these patients' hearts actually pump less
blood."
38.
HUNTINGTON'S DISEASE & CFS - GENETIC PROFILING
From a reader--
39. HOT
FLASHES
From a reader--
"I used to own a vitamin and herb shop. Some
things that may help with hot flashes are Vitamin E...at least 800 iu's per day.
Also, I'm in the medical field and Effexor 75 mg. works GREAT for hot flashes,
plus helps you sleep. It is used in conjunction with Vit. E for breast cancer
patients."
40. ADVICE ON
APPLYING FOR DISABILITY
From a reader--
Lengthy article about advice on applying for
disability
Your Right To Disability: Persistence
Pays Off
by Mac Sasser, Charlotte, NC
From Nov/Dec CFIDS Chronicle
41.
HEALING CHRONIC ILLNESS AT HOME
A most fascinating article from a
reader!--
42. INSOMNIA
NEWSLETTER
Topic 2 - Lady needs Trazadone plus Klonopin
for sleep.
Topic 3 - Rate sleep meds to help others with
insomnia.
43. LUNESTA
(revisited)
From readers--
"I took the plunge and started the new LUNESTA
sleep pill for my insomnia.
For anyone interested in this pill DO NOT BREAK
IT IN HALF. The taste is unbearable
and lasts forever. Take it whole and wait
until you are in bed. It works fairly quickly.
I am just starting my third
night. It seems to work better than most other pills.
So far no side effects
for me, but that does not mean it is safe."
"I just wanted you and your readers to know
that Lunesta seems to work for me. It's a new sleep aid drug and I took one
tablet and slept for a good 7 hours and felt fine the next morning. i haven't
used it every day, in fact I just use it once or twice a week to keep me on a
good sleep pattern since I tend to stay up late and sleep late on my days off (I
take it the night before I go back to work the next day)."
[NOTE FROM DOMINIE: Other
readers have reported their experiences with Lunesta in my recent newsletters.
Go to www.fms-help.com/newsletters.htm - click on SEARCH - type in Lunesta.]
44. MYALGIC
ENCEPHALOMYELITIS (M.E.)
From a reader--
"I think that two of the major things to
accomplish to move the ball forward in the political and medical arena is to
return to the original name, Myalgic Encephalomyelitis and the correct
neurological ICD code, G93.3 and also the adoption of the Canadian Consensus
Criteria for M.E./CFS."
45. SEX
& FIBROMYALGIA (revisited)
Below are some responses I received from
readers in answer to the question in the July 2005 newsletter (Topic #2) at
www.fms-help.com/July2005.htm--
1. "Ummmm....let me think a while.
Oh, yes, sex.....I think I remember that..... Are you kidding? Too
much pain!"
2. "Sex whats that? I remember it well.......used to be a sex monger but not anymore and it's not due to pain --
it seems that I am so overwhelmingly busy doing this and that and research and
trying not to over do the day that I just plain don't even think about having
sex with my man of six years. I guess I should start paying attention to him
before it gets too late. I enjoy sex with him greatly too but lately it
seems like its just too much effort to work on making anyone else feel
good."
3. "I also do not have a desire for
intimacy. I am in so much pain do not want to be touched. I can't
stand my body much less anyone else."
4. "Yeah, I can comment on #2 Sex & Fibro www.fms-help.com/July2005.htm I can comment
on that a lot. I’ve been married to the same wonderful man for 20 years, I
married him in 1985 and had my accident in 1994. I wasn’t diagnosed until
a few years ago, but I & my husband know darned well that FM does indeed
attack sex drive & sexual relations. After I was diagnosed with FM and
started on medication, I noticed that along with the pain going away the sexual
desire and ability to achieve orgasm was gone too. It seems that the
ability to feel pain and the ability to feel sexually all stem from the same
thing. For a long time I found that I could go through the motions and
force myself to go through the sexual act for my husband’s sake and for his
fulfillment. I know without a shadow of a doubt that that was a major
reason why our marriage survived. The thing is that after awhile my
husband started noticing and wanting more than just his needs
fulfilled.”
5.
"I
just wanted to respond to your newletter in regards to sex and FMS. I am
42 years old and feel like a 90 year old right now. I have been diagnosed
with fms for over a year now, but have been suffering for years.
I have been married for 9 years to a wonderful man
and am so grateful to God that he is patient and loving. Ever since
I had my first daughter 8 years ago, I have NO desire whatsoever. We did
manage to have a second girl 4 years ago but that is it. Since the onset
of the severe symptoms, I think we have made love 3 times. I feel like I
am cheating my husband out of a healthy life, but the desire isn't there, the
pain I suffer when we do make love makes me cry. I know I need to lose
weight but I cannot seem to get it to budge. I am so depressed now because
I cannot afford my meds. I cannot find work (couldn't do it anyway) and
cannot seem to get the work done for my bookkeeping clients that I have. I
have no drive! In any way! This fibro is
killing me! I want my old life back!"
6. "Since
my onset of symptoms in 2001, I have found that sex and desire have both been
very difficult. Intercourse was painful. I should mention that on 11/3/03 I had
my ovaries removed--or in other words, surgical menopause. I have recently learned a lot about my particular
causes and possible cures to both the desire for sex and the 'painful
intercourse'. I had to find out if
my hormones were in balance or if my HRT was enough to help on the estrogen side
of the ability to want sex. I have worked with my doctor to obtain an
optimal estrogen level and now have a better understanding of what causes a
woman to desire sex. Sorry 'guys' I don't know how fibro affects your
sexual life. It is not only estrogen
but testosterone also plays a major part in the physical desire for
intimacy. Raising to the right estrogen level allowed my adrenal glands to
produce the right amount of testosterone so desire returned (Yeah!) In
some women a combination drug called Estratest helps when testosterone is not
being sufficiently produced, but it can have the side effect of causing or
adding to a 'female' mustache and some hair loss. As far as the painful side of intercourse, again for
me, it was achieving the right hormone levels. I am now using a combination of HRT from my doctor and
a post menopausal natural supplement to help me in this area of concern.
The supplement I take contains natural estrogens called phytoestrogens (mostly
derived from soy beans), as well as black cohosh, dong quai, wild yam and
other natural ingredients. The supplement is for the menopausal symptoms
of hot sweats, lack of lubrication, etc. Hormone imbalance is one of the least, as far as I've
seen, talked about side effects of FMS/CFS. It is an area that I think
should be addressed more thoroughly."
7. I wanted to respond to the query in
your recent newsletter about sex and pain and sexual desire. I would bet
that this is a problem for many of us. I felt compelled to respond because it is
a "sore spot" for me lately. As with any physical activity, there is
muscle pain and fatigue afterward. As gentle as my husband and I try to be
together, you can't deny the physics. I am a small to average size woman
and he is 6'4", large framed and 245 lbs. The bottom line is that I
love my husband, but I have been avoiding sex with him because of the subsequent
pain afterwards. I know he understands. But combine that with all
the other stresses in life and it doesn't make for a solid marriage. The
longer I have this illness and the older I get (41), the less desire I
have. I feel so bad about it lately, because I know it's hurting our
marriage. I know that antidepressants typically decrease desire. I am not
on a pharmaceutical antidepressant, but I do take a natural blend. I
suppose that could have the same effect. Perhaps another reader will
respond with some ideas to help. I just wanted to offer my two cents and
let others know they are not alone with this added problem."
8. "I wanted to comment about this as my
husband and I had a wonderful sex life before my car accident and I was
diagnosed with the fibro. Our sex life was an every day thing, like taking a
vitimin so to speak and it was intense and very passionate. I have
found since the accident and since getting diagnosed with fibro, my system is
dryer then it used to be, now this could be from the medication that I am taking
contributing to this. I sat and talked with my hubby about things he felt had
changed and he said the biggest thing was his mental attitude about me, and his
fear I would hurt really bad for days after. He also said that since I have had
fibro, he has had to be aggressive with me, as in he gives me massages and helps
me relax before sex, he takes his time making me feel comfortable and he makes
sure he is very gentle with his touch. (also adding a bit of lube can help alot
too) He has said that other men who have a wife with fibro should try to
understand there is foreplay, so to speak before the actual foreplay and the men
have to take more responsibility and time to please their wife. He makes
me feel as relaxed as possible with the massaging then after when he
thinks I am totally cvomfortable then he will get more sexual with me. I myself
find his technique works wonders. My husband also commented on the fact that
there are some nights when I do not seem like I want sex and to be close because
I have had a painful day and those are the nights where I could use the massage
and the extra attention. So communication is also most important......letting
the other one know how we are feeling, it is a bit more time consuming but it
can work. I do find and this is going to sound od but please bare with me as
this is very personal but when he takes all the time with me and there is lots
of foreplay that it takes my focus off my pain and believe it or not when I am
in the middle of all the passion......I do not feel alot
of pain.......but as soon as I come down off that high, I do feel the pain
and it is about the same as before we started...maybe a bit better because I
have made that connection with my husband again, something I had thought I had
lost because of my health.I also find that some nights it is about him touching
me and me touching him and satisfying each other that way , not the
actual act of intercourse as those nights I cannot handle it. I guess with
having fibro and a partner, you have to have a much more opened mind about sex
and start experimenting with each other so you do not lose that closness
sexaully. Now we have not gotten into doing it every night again but the passion
is back. It takes time and patience and a gentle touch....think of it as getting
to know each other again like you were dating......make it fun and different. It
does help me deal with having fibro better when I don't feel like I am failing
as a wife. Hope this helps someone."
9. "I always had a problem with
medications for the FMS (especially antidepressants, klonopin, neurontin,
even some pain meds) they made me unable to climax. Wellbutrin is very
helpful. It not only increases desire but it makes it easier to
climax. I looked it up and that is a normal response with
Wellbutrin."
10. "I am 49 years of age. I have
spent endless amounts of money trying to relieve neck pain, mostly. Most
doctors said you do have a small problem with your neck, but it should not be
causing you so much pain. The pain perception was uncharacteristically
over sensitive. I finally found a doctor that sounded wacky but described
my symptoms to a tee. So I went to see him. Many $$$$ later, he
tells me I have an over production of adrenaline that suppresses the
production of all the other hormones: estrogen, testosterone,
serotonin, endorphins, thyroid and however many other hormones exist in the
universe. He told me not to get my heart rate over 130, because then I
start producing more adrenaline. He told me to have regular sex because
that releases adrenaline at just the right rate. I told the doctor
that I don't feel like sex and it's painful. He said even if I don't feel
like it, it has to be done, and of course to use whatever is necessary to make
it more comfortable. But I think what has really helped the most is
keeping the heart rate below 130. Within a couple of weeks, my neck pain
was gone and some of my dehydration (I am always thirsty). I have a lot
more energy, as long as I keep having sex. Anyway, I wanted to share what I
found with you to see what you thought and maybe it can help others. My
family members and friends swear this doctor is a quack, but none of the other
doctors, chiropractors, acupuncturists, surgeons, etc., have had no
success."
46. XYREM
(revisited)
From a reader--
"I started to take Xyrem [for
sleep] about 1 year ago. Within two weeks I thought that I had found a
miracle. Began to feel human again, it is amazing how a little thing
called sleep can change your world. Just BEWARE No one told me
that there are a few people who get another possibly chronic condition
called oral lichen planus. After about the 2
week I began getting these cold sores in my mouth, I never had been victim to
them before. First I asked my pharmacist and he said that he did not think
that they were cold sores as we know them. He suggested that I go to my
dr. To make a long story short. I spoke to my Dr, and to
the orphan medical team and sure enough this condition they do believe was
brought on due to the xyrem. The orphan team suggested that I stop taking
the drug. I was truly depressed. It was the first thing that I believed
had helped me in the past 4 years. Not that this happens often, I
just am one of the lucky ones,HA-HA but if you see unexplained
sores in your mouth stop and talk to your Dr. and the
team."
47. LEVAQUIN
DESTROYED SLEEP FUNCTION
From a reader--
"I'm a 44 yr old man who has had sleep
portion of my brain ruined by an antibiotic called Levaquin, kin to
Cipro. I took this drug two months ago and have been unable to sleep
without aids that work at first and then stop. I've tried Ambien, Lunesta,
Limbitrol which is Amytriptyline & Benzo of some kind. Tonight I'm
trying Ativan. I've tried all of the natural aids too and didn't do
anything but kind of numb me."
48. LOW DOSE
NALTREXONE
From a reader--
"I'm still struggling with my CFIDS. My doctor
has recently prescribed for me LDN -- Low Dose Naltrexone and I just started
taking that medication. She really believes that it will help and has done
numerous studies for this 'off Label' medication. I actually have been
feeling weaker since I've been taking it for 3 days now and
been having trouble sleeping again which is so bad for my CFS.
I feel very sick this morning and I think my body is telling me
to stop this med. I also have mycoplasma -- tried the antibiotic route for 8
weeks and it never helped!! I still test positive. I think I'm stopping
the Naltrexone!!! You can look it up on line at www.lowdosenaltrexone.org."
[NOTE FROM DOMINIE: LDN is
being prescribed for people with autoimmune illnesses, such as fibromyalgia and
chronic fatigue syndrome, to boost their immune systems. There are
some positive comments at http://lowdosenaltrexone.org/others.htm from
people with fibromyalgia who are using low dose naltrexone and improving.
I don't doubt that our immune systems are somehow involved.
I personally have had good results with an immune balancing (not boosting)
powder for the past 4 years. Without it, I barely
function.]
49. SEVERE STRESS
CAN CAUSE FIBRO
I personally believe that fibromyalgia may be caused by mycoplasmas (mutated viruses). When a genetically predisposed person goes through severe stress or trauma--either physical (car accident or surgery), mental (job problems) or emotional (loss of family member or divorce)--that this alters the immune response and allows mycoplasmas to do their dirty work in many parts of the body, including vital areas of the brain, such as the hypothalamus, the gland that controls various body functions such as sleep, temperature regulation, endocrine (hormonal) system, etc. Dysautonomia (autonomic nervous system dysfunction) develops.
50. OVERDOSED AMERICA
From a reader--
The Broken Promise of American
Medicine
51. DRUG
SAFETY
Check your meds--
52. PROTECT
YOUR RIGHT TO USE SUPPLEMENTS
From a reader--
53. FLU SHOT
& FIBROMYALGIA?
From a
reader--
"I too
believe that viral Pneumonia reactivated my FM in 1998. After much thought,
I truly believe I've had FM all my life, but not as debilitating as it is now. I
functioned at a very high pace. Before my FM showed up in full
force, I had taken a flu shot a week before. Not feeling good
anyway, I had some kind of a cold, I still took the flu shot. After that
my body caught the flu or FM and Pneumonia a few days later, I was hospitalized
for a week. My doctor diagnosed me with FM and said goodbye, there's
nothing I can do for you. This past year we were hit directly with two
hurricanes in Florida, and I was hospitalized again with this mysterious viral
infection that attacks my respiratory system. I thought for sure that I
was going to die that time, but after 8 months, I finally recovered, only to
realize that I can not stand longer than a few minutes, or go grocery
shopping. I'm bedridden. I have FM/RA. Last week after
more testing and more doctors, I was diagnosed with Diabetes Type II
(Insulin Resistant) and Neuropathy. So now with 4 chronic diseases, I
could use all the help I can get. I just love your site www.fms-help.com and all the hard work you put into it to help all of us who
suffer with these horrific diseases. I was denied for SSD & SSI last
year and reapplied again. I haven't heard from them yet, but I feel that
gut instinct that I will be denied again. The realization that the
SSS believes that I could still do some type of work just amazed me beyond
belief."
54. WOMEN FEEL
MORE PAIN THAN MEN?
From immunesupport.com--
"Research Suggests Women Feel Pain More
Than Men"
55. SAFE
BEEF
Received this information from a
friend...here's a snippet from the longer article--
What is Mad Cow Disease?
Dr. Petersen explained that mad cow disease is
one of several prion diseases. Prions are normal proteins, which, the current
thinking goes, can become misshapen and infect other prions, resulting in a
disease of the nervous system that causes dementia and ultimately death. Humans
who eat the nervous tissue of an animal with mad cow can develop what is called
variant Cruetzfeldt-Jakob disease (vCJD).
Dr. Petersen's first suggestion is one that the
French government instituted -- eliminate bone-in cuts, or meats
still on the bone. The reason for this is that the cow's nervous system --
including its bone marrow -- harbors mad cow disease. When you cook meat that is
on the bone, there is the possibility that marrow from the adjacent bone could
contaminate the meat. For complete safety, buy the steak or the roast, but
remove the meat from the bone before you cook it.
As for hamburgers, there is no need to go
without, says Dr. Petersen. Chopped meat is dangerous only because you rarely
have a way of knowing what parts of the cow it comes from. Have a butcher grind
it for you from a cut of meat, such as sirloin, that has nothing to do with the
cow's nervous system.
56. KAY
WALKER'S STORY
Kay Walker, Co-Founder of International
Coalition for Wellness (ICW), is much more than just an interested party.
In September, of 1998, Kay Walker was out for a walk when her life changed in an
instant. Kay was struck by a drunk driver and suffered severe life
threatening injuries. With God’s hand, Kay was able to recover from her
injuries, but was left with severe Fibromyalgia. She was also left with little
hope of a pain-free life. Kay and her husband John set out to prove the experts
wrong, and with the help of the other coalition members, developed this amazing
system. She now lives pain free and travels the US helping others with
Fibromyalgia. For further information you may visit Kay's website at
or www.fibromyalgiahelp.org (this site in under construction) or email Kay at icwellness@aol.com.
57. LAURICIDIN
(revisited)
"You may be interested in www.lauricidin.com As the discoverer of the pharmacological
role of monolaurin, I may have more information than found at other sites.
While I have received testimonials from several users of Lauricidin, I need more
to help convince my colleagues that it is of great benefit.
Your aid in this
matter will be greatly appreciated if you can ask your readers to send me
letters." - Prof. Dr. Jon J. Kabara JonKab@aol.com
58. CO-Q-10
FOR CFIDS
"I recovered completely from 18 months of
debilitating CFS in March 2000. I suffered all the symptoms as clinically
defined. Also during my ordeal, my brain malfunctioned with symptoms like high
anxiety, suicidal depression, insomnia and negative thoughts running through my
mind over and over like a 'spoilt record.' My endocrine glands were down too and
my emotions went flat. Scary I tell you. It was like in limbo neither alive nor
dead. Since my full recovery, I have done much research on CFS to
find out its cause and why I was cured. Now I have isolated 3 key dietary
supplements that can rejuvenate our body cells for self healing. A CFS sufferer
using this formula can see results within days! Yes my Q10 Formula has helped
friends suffering CFS, rheumatoid arthritis and even erectile dysfunction to
recover completely. Read about it in my website www.q10formula.com. Trust me.
I've been there, that dreadful CFS dungeon if I may call it, and now I've
found the key to release others and also the quickest way out."
59. SYNTHOVIAL
7
From a reader--
Interesting testimonials about hyaluronic acid
helping FMS. To read more about this subject in my previous
newsletters, go to www.fms-help.com, click on
SEARCH THIS SITE, then type in hyaluronic acid)--
60.
ELECTROMAGNETIC FIELDS INTERFERE WITH SLEEP
From the Fibromyalgia Coalition International
(FCI) newsletter--
"I had Oram Miller come to my house and
evaluate the electrical fields and the magnetic fields of each room in my house.
He made a lot of recommendations of which I have followed up on. It has made a
lot of difference in my sleep! I am now getting 7-8 hours instead of 3
or 4 hours each night and I feel so much better. - Evelyn E., Lone
Jack, MO"
61. HILLIE'S
CFS STORY
Australian newsletter reader tells how her CFS
began--
62. VISUAL
CONTRAST SENSITIVITY TEST
This website provides information on chronic
human illness caused by exposure to toxins produced by living organisms
(biotoxins). Many biotoxins are neurotoxins in that they adversely affect
neurologic function. Registered users will be able to complete questionnaires on
exposure history, medical history and current symptoms. Users can also take a
vision screening test that helps determine whether or not their health problems
are likely to be caused by biotoxins. Deficits on the vision test,
visual contrast sensitivity, have been associated with chronic illness
caused by biotoxin exposure (1-8). If the data suggest biotoxin-induced
illness, users can obtain a treatment protocol that has been used to
successfully treat many people. This paradigm for diagnosing and treating
chronic, biotoxin-mediated illness is based on research by Ritchie C. Shoemaker,
MD, and H. Kenneth Hudnell, PhD, and on the clinical experiences of Dr.
Shoemaker (1-8).
63. DR.
TEITELBAUM'S PROTOCOL
Recommendations for FMS/CFIDS pain, sleep
problems, anxiety, etc. from the author of "From
Fatigued to Fantastic"--
64. ADRENAL
GLANDS
Below are comments from two newsletter readers
in response to a question about the adrenals in the July 2005 newsletter
www.fms-help.com/July2005.htm--
Reader #1: "I've never taken adrenal supplements, however, years ago I made a
study on adrenaline, anorexia, and some other drugs. I discovered that
adrenaline is composed of Carbon, Hydrogen, Oxygen, and Nitrogen. These are the
same components in such drugs as Caffeine, Codeine, Cocaine, Morphine, Heroin,
and other opium derivatives, only the components are in different strengths in
the various drugs. My conclusion was that whenever one takes one of these drugs
the body reads that drug as excess adrenaline and ceases to produce adrenaline
so as to adjust the amount of adrenaline in the body. Then as the drug starts to
wear off and a withdrawal ensues a person goes through the discomforts of
headaches and lack of energy and other symptoms because the body is still
expecting that extra boost from the drug and has not yet begun to produce
adequate adrenaline to fill the gap. I used to have very severe withdrawals just
from missing a cup of coffee because my system is very sensitive. Everyone,
healthy or otherwise, has varying sensitivities to these various drugs and any
other, and great caution should be used in regard to anything that includes the
use of a drug that mimics adrenaline or affects its production. I am
NOT a doctor, but these are my personal findings based on a personal study
both from books and experience, as well as observations of other people who were
malnourished and appeared to be on a self-induced adrenaline
high."
Reader #2: "ANY
DRUG THAT MIMICS ADRENALINE CAN BE DANGEROUS ONCE YOU STOP THE DRUG. JUST LIKE
NOSE DROPS PLACED IN YOUR NOSE FOR TOO LONG A PERIOD OF TIME CAN CAUSE THE
TISSUE INSIDE TO DRY UP. ONCE YOU STOP THE NOSE DROPS THE MECHANICS INSIDE THE
NOSE FORGETS HOW TO WORK SINCE YOU ARE LUBRICATING THE VALVE ARTIFICIALLY. THE
BODY FORGETS HOW TO WORK BY ITSELF AND YOU CAN NOT BREATHE THROUGH YOUR NOSE.
PREDNISONE IS CORTISONE. CORTISONE IS WHAT THE ADRENAL GLANDS MANUFACTURE. THE
GLANDS WILL STOP PRODUCING THE CORTISONE IF YOU ARTIFICIALLY SUPPLY IT.
THERE ARE MANY DRUGS ON THE MARKET THAT YOU NEED TO BE WEANED OFF OF. WITHOUT
ADRENALINE YOU CAN NOT LIVE."
65.
FIBROMYALGIA FREEDOM HOUSE HELPING UNIVERSITY OF
WASHINGTON
"Just wanted to update you on what we have been
doing. Fibromyalgia Freedom House, nonprofit and public charity, has been
appointed by the University of Washington Medical School to be their advisory
group for the Department of Rehabilitation and the Pain Center's Fibromyalgia
Research Center's newly awarded 5-year grant. Our kick-off event announcing all
our plans in improving our methods of treatment...the safest way possible. Our
kick-off date is October 6, 2005, 3 p.m. to however long it takes to get the
ball rolling swiftly. We only have room for 35 at the Department of Rehab's
conference room...so need to get reservations in while there is the chance.
Call 206-362-2395 for more info. This is a free event with the following
presenters: Dr. James Robinson, MD, PhD, U of WA. Associate Professor; Joy
Selak and Dr. Steven Overman, Authors of the newly published, "You Don't
Look Sick," and the research team members. Audience is 1/2 filled
already, consisting of 60% healthcare providers, 10% government agencies, 30%
patients. Refreshments will be served. We have been waiting for years for this
opportunity.....now the door is opened....The pain scale article on your site
www.fms-help.com/pain.htm is going with
me to the research team at our next meeting. I will be advising the
University of Washington medical team of all the great help out there...like
you!"
66. PAXIL
DANGERS
"I would like to let you know about a drug
called PAXIL. I just went off of it and many others at Fibrohugs have had
bad results with it as well. Violence is one such effect of withdrawal.
The withdrawal symptoms, Ken, are like that of Heroin, but no Physician will
tell you that. I had all the symptoms listed there but I also felt like my body
was on fire, like little bugs were crawling all over me, like rats were inside
my privates (I guess that was the zaps they mentioned). It was just horrific!!
It takes weeks to come down from the withdrawal. I am using Benydryl to help me
go off of it. Although I am rid of the drug, I am still very very sick. I
am writing to you, Ken, to ask you to let our members know the danger of this
drug. No human being should go through that. A doctor should make us aware
of what a drug can do to us. But they do not do that. The pain involved in this
can last for years. Just ask xxx, xxx, and xxx from Fibrohugs to name a few. I
guess because I was only on it for a little under two years, my withdrawal was
not as bad as theirs but it was still horrific and I can only imagine what
theirs was like. I felt I should pass this along to you so you can be
aware of this drug and its dangers. One lady on the site lost her son to the
drug--he committed suicide. That is what it can do. I never knew
that."
To search more on Paxil, click this link:
http://www.google.ca/search?hl=en&q=paxil+warning&btnG=Search&meta
67. READER WITH POST POLIO
SYNDROME
"I have Post Polio (PPS) which from
reading your Newsletters, is very closely related to FMS. We are blessed because
Dr. Richard Bruno has done extensive research into autopsie reports of polio
victims since the early 1900's. In his book Understanding and treating
"Post-Polio Syndrome" and Chronic Fatigue The Polio Paradox , he
reveals that the spots on the brain cannot be seen by machines
until they are large enough and by then we have severe fatigue
syndrome.
We have developing brain fog also.
Due to an extensive injection of anesthesia over the last year, my concentration
was fading fast. I changed from an optimistic attitude to a pessimistic
attitude. Great concern drove me to the internet. The permanent workable
positive results:
1. Protein / Carbohydrate Ratio
diet of 3:4 (lost 10 lbs and blood pressure returned to normal)
2. Flaxseeds (Optimistic attitude
& concentration returned to what it was before the anesthesia damage to the
brain and nervous system). Flaxseeds are one of the highest foods in lignans and
Omega 3 oils.
3. Fresh raw coconut (Stablized my
weight on a regular diet with very little exercise due to my severe neuron
damage which causes severe fatigue after short periods of walking or standing)
Also, balanced my thyroid hormones to function more normally. Normal appetite
returned.
4. Cilantro Chelation - a handful
of cilantro leaves per day for 2 to 3 weeks (Rid my body of mercury and heavy
metal poisoning. Viruses and bacteria in the body are freed by the
loss of the mercury so 2 1/2 tablespoons of brown flaxseeds per day is
needed to delete these viruses and bacteria.) Grind the flaxseeds with a coffee
grinder or blender using an ice blade. Mix with 5 tablespoons of water or
sprinkle on cold cereal, not hot) Excessive heat, oxygen, and light
damage flaxseeds. Eat within 15 minutes after grinding to receive the full
benefit. Keep flaxseeds in the refrigerator or freezer.
4. B.E.S.T (BioEnergetic
Synchronization Technique) to keep the best possible electrical flow
throughout my body. This also corrected my shoulders and neck slump after
2 weeks of 3 times a week treatments. As my nerve flow weakens, my muscles
shorten and become weaker and painful with the shortening pull on them. This
treatement begins to reverse that action. Then I return every 3 to 4 weeks for a
tuneup because my nerve flow gradually drops with muscle use over a period of a
month. I prefer going to a 'Master" B.E.S.T level of Doctor of
Chiropractic who is in good health because if the doctor's nervous system is
strong then my nervous system is helped more. http://www.morter.com/practitioner.php "
68. DANGEROUS
DRUGS
DRUG
RECALL - This information was sent out by Ken
Eutenier from www.fibrohugs.com and
called to my attention by Pattie Caprio, founder of the Million Letter Campaign
www.fms-help.com/letter.htm
Please read below, because many with FMS/CFIDS are taking
these!
1. Major Drug
Recall!
2. Duragesic and the generic product WARNING.
3. Pregabalin,
Report Describes Potential Problem.
4. Antidepressant Medications and the
risk of suicidality.
5. Suicidality in Pediatric and Adult Patients on/off
Paxil
==================================================
1. Major Drug Recall. N.J. drug maker, Able Laboratories, suspends
manufacturing
operations and recalls all drugs.
New
Jersey company Able Laboratories suspended manufacturing
operations and
voluntary recalled all of their drug products because of the
FDA's serious
concerns that they were not produced according to quality
assurance
standards. It is important to note that this recall only
applies to the drugs produced by Able
Laboratories - and not to the same
drugs produced by other manufacturers. For
more information, please see FDA
press release. Recalled drugs include:
Acetaminophen &
codeine,
Hydrocodone bitartrate apap, Indomethacin, Naproxen
Sodium,
Propoxyphene naps/apap (generic name and under the Ivax label), and
Tramadol HCL
(under the Ivax label).
Download a sample
patient notice at http://www.spine.org/Forms/Able_laboratories_sample.pdf
2. Duragesic
and the generic product WARNING
FDA issued a public
health advisory to alert health care
professionals,
patients and their
caregivers of reports of death and other serious
side effects from overdoses
of fentanyl in patients using fentanyl
transdermal (skin) patches for pain
control. Deaths and overdoses
have occurred in patients using both the brand
name product Duragesic and
the generic product. Some patients and health care
providers may not be
fully aware of the dangers of this very strong narcotic
painkiller. The
directions for using the fentanyl skin patch must be followed
exactly
to prevent death or other serious side effects from overdosing
with
fentanyl.
Read the MedWatch safety summary, including links to
the Public
Health Advisory, Healthcare Professional and Patient Information
Sheets, and
the Drug Information Page at: http://www.fda.gov/medwatch/SAFETY/2005/safety05.htm#Fentanyl
3. Pregabalin, Report
Describes Potential Problem
A report in the July Annals
of Neurology describes a serious adverse
event experienced by a participant
in a clinical trial that may raise
a new caution about the use of
antiepileptic drugs for conditions other
than epilepsy. An elderly women
enrolled in a clinical trial of
pregabalin, a new drug for the treatment of
pain and seizures,
abruptly discontinued the medication and then developed
neurological symptoms
including headache, confusion and hallucinations. The
study's authors from
Massachusetts General Hospital (MGH) suggest that all
patients
stopping antiepileptic drugs (AEDs) should do so gradually to
avoid
complications of withdrawal.
Full Story: http://www.sciencedaily.com/releases/2005/07/050711015101.htm#
4. Antidepressant Medications and the risk of
suicidality
FDA notified healthcare professionals about
the availability of
updated Healthcare Professional and Patient Information
Sheets for
antidepressant medications that were the subject of a June 30,
2005
Public Health Advisory issued about the risk of suicidality (suicidal
thinking or
behaviour) in adults being treated with antidepressant
medications.
Read the complete MedWatch 2005 Safety summary, including
links to
the original June 30 PHA and the updated information sheets,
at:
http://www.fda.gov/medwatch/SAFETY/2005/safety05.htm#antidepressant
5. Suicidality in
Pediatric and Adult Patients on/off Paxil
FDA has
concluded that suicidal thinking or behaviour may increase in
pediatric
patients treated with any type of antidepressant,
especially early in
treatment. Increases in suicidal thinking or behaviour due
to drug can be
expected in about 1 out of 50 treated pediatric patients.
Note that, although
paroxetine is prescribed for pediatric patients,
it is not approved by FDA
for use in pediatric patients.
Full Story: http://www.fda.gov/cder/drug/InfoSheets/HCP/paroxetineHCP.htm
69.
SPIRITUAL UPLIFT CORNER
"Stepping Heavenward -
One Woman's Journey Toward Godliness"
by Elizabeth Prentiss
Below is a description of the
book:
"How dreadfully old I am getting! Sixteen!" So
begins Stepping Heavenward by Elizabeth Prentiss, the
journal-like account of a nineteenth century girl who learns, on the path to
womanhood, that true happiness can be found in giving oneself for others. "This
book is a treasure of both Godly and womanly wisdom told with disarming candor
and humility, yet revealing a deep heart's desire to know God," says noted
Christian speaker Elisabeth Elliot. "I do not hesitate to recommend it
to men, who need to understand the wives they live with, and to any woman who
wants to walk with God.
70. DOMINIE'S
PERSONAL UPDATE
I have been doing SO much better this
month! As most of you know who read the newsletter, I became physically
and emotionally depleted after my father's illness and death earlier this year
www.fms-help.com/eulogy.htm
A doctor put me on 1/2 tablet of Lexapro which helped greatly with the
crying. I also had to take atenolol for blood pressure for awhile because
there was too much adrenaline in my system from the stress. I have been
taking 1 scoop of the plain immune powder (sprinkled on cold cereal) plus
Dr. Murphree's adrenal cortex (1 capsule per day) and CFS/Fibro formula (1
packet per day). This past month I have come alive
again! Thank God! For a list of what I use and do
that helps me, see www.fms-help.com/what.htm
I had a friend years ago who developed a
biochemical depression so bad that she couldn't barely get out of bed to take
care of her 4 young children. I understand now what a severe depression
can do to your energy levels! Zilch! On top of the grieving for my
dad, I had to move my piano business to a new location, which was nerve-racking,
since I had to be out of the other place in 2 weeks. Thankfully the Lord
opened a door for me at Oak Forest Baptist Church. They are really happy
that I am there, and in addition to the 20 students I brought over, many from
the church and day care are taking lessons, including the pastor and his
wife! I play the piano at Oak Forest now, since they needed a church
pianist. How God works is amazing at times! We have a recital
coming up in August that everyone is preparing for. My students range in
age from 5 to 65.
I want to also mention how valuable my dear
husband is to me! Without Donnie, I couldn't do what I do. On top of
his job, he does all of the housework, yardwork and grocery shopping (sorry
girls, he's taken!) I have piano teaching business, the cooking,
dishes and laundry. My dear husband helps me with all of my
endeavors--he takes the pictures at piano recitals, sets
up sound equipment at the Chinese Club meetings, etc. We are there for
eachother for whatever comes up in life. What a joy! We will soon be
married 6 years. I have had two previous marriages that failed. Long
story. I am just glad for God's mercy and goodness.
Well, that's all for this month's
newsletter. May God meet all of your needs as you serve Him!
Yours faithfully,
Dominie Soo
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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