| www.turnto23.com/news/19337804/detail.html - symptom chart
Response rom a reader--
"I had H1N1 and had an awful sore throat. That
was my first symptom. It was an achy throat. Same for my 7 y/o son.
His was so bad the doctor did a rapid strep test, he could barely swallow.
When that came back negative they did the H1N1 swab and we found out that's the
strain we had. I was down for a whole week. My kids got over it in
about 3 days each."
7. DEXEDRINE FOR INTERSTITIAL
CYSTITIS (IC)
From a reader--
"I want to share a new treatment that I
found while I was having a very bad episode of IC/painful bladder
syndrome. The pain was so bad I just could not stand it
anymore. I have had fibro since approx. 1993, diagnosed in 1998, then
started having bladder problems, then I had my gallbladder removed, a
hysterectomy, a prolapsed bladder repair which was done too "tight" and had to
be loosened.... For the last year I have been on Macrobid daily to try to
help with the painful bladder symptoms but I still get flares and this last time
it just wouldn't stop. It has been approx. 3 months now, constant burning
pain in my abdomen daily, having to know where the nearest washroom is wherever
I go, so I stayed at home as much as I could, using a catheter at home when I
couldn't go, getting up numerous times during the night, either I couldn't
go or I would go 40 times a day, it was a nightmare...So, I started looking on the internet for studies done
on IC/painful bladder and found this one lonely little study done in the
US. There were only two people in this study but both people reported that
after they took this medication that they were painfree and if they missed a day
or two then the pain came right back again. It was
Dexedrine which is used mainly for children with ADHD, in the
study they took 20 mgs in the morning and 20 mgs in the afternoon. Since I
have looked on other websites and found others that have taken it even though
urologists don't seem to acknowledge or recommend it. My doctor & I
decided to try it and I have been taking 15 mg extended release every
morning. The pain is 90% gone, and if I take 25 mgs of trazadone at night
I only get up once during the night. It is unbelieveable and well worth
trying. I have to stress though that I tried the normal dexedrine and it
didn't work, it has to be the extended release so you want to be careful about
taking it in the afternoon or near bedtime, it will keep you awake. I also
take medication for my thyroid and it doesn't seem to interfere with that.
It is just simply amazing!"
FROM DOM: Google dexedrine IC for more info.
8. FMS, CFS, & IMMUNE
FUNCTION
From a reader--
""I understand as you have stated that you are not a
doctor but sometimes that is what we need more than anything, to reach
out to each other, see what options we have, see what others have tried, and
decide with the help of our physician what is best for our own
bodies. As all of us know, there are no two of us alike and no
one treatment that works for all individuals fibromyalgia and everything else
that we develop as a result of the fibro as the years pass. I
personally think that it is our immune systems that just do not work
properly, therefore we get other things like IC, chronic fatigue,
IBS, Reynauds etc., etc."
FROM DOM: I
agree. I have had a damaged immune system since birth, I think - had
many illnesses as a child, gamma globulin shots to "boost" immune function,
etc. I finally developed full-blown FMS in 1982 at age 30
www.fms-help.com/fibro.htm and later CFIDS in 1987 www.fms-help.com/fatigue.htm after a horrible virus. Since 2001, I have had to depend on
a high-tech immune balancing shake to keep myself going. And a few
months ago I began using oxygenating / alkalizing drops which raise the body's
pH. (Viruses can't do their "thing" in an oxygen-rich environment.)
I feel normal now. Without these two things, I wouldn't be able to work or
even function. A list of things that are helpful to me is at
www.fms-help.com/what.htm. Maybe
some of these things will help others with FMS/CFIDS and related problems.
9. PLACEBO EFFECT OF ADHD
DRUGS
From Dr. Murphree's health newsletter--
FROM DOM: Having raised two ADHD
stepsons, I can say this was true in our experience as
well.
10. XMRV VIDEO
CLIP
Short video clip from a reader--
XMRV is catalyst to ME, CFS, and neuro-immune
disease
FROM DOM:
Wow. This is impressive! They may have finally found what causes
CFS/ME. BTW, XMRV is transferred through breast milk, so lactating CFS
patients will definitely want to watch this video!
11.
LAUREL'S CFS VIDEO
From a newsletter reader--
LAUREL'S CFS VIDEO
Laurel made a video
presentation for an upcoming government meeting. people
can attend or
send notes. laurel decided to make a video, and it was
accepted and
will be played at the meeting. since she can't talk, she did 2
versions
- one with music, one with her sis in laaw talking for her. i
thought
she did a great job, especially given her limitations.
anyway, here are
the links:
http://www.youtube.com/watch?v=LvweCk44WHs - sister in law talks for her
http://www.youtube.com/watch?v=qQX0XLqdx1A&feature=related - music only
she's not doing well now so can't answer comments much at all right
now.
still, i thought u all my like to see it.
jim
FROM
DOM: I could soooo relate to Laurel! I too was like a "zombie"
- was diagnosed with CFIDS in 1987 www.fms-help.com/fatigue.htm
(FMS earlier in 1982 www.fms-help.com/fibro.htm).
I believe CFIDS/ME is caused by a virus living inside our
bodies that has hijacked our brain and nervous system. I wish I
could communicate with Laurel or refer her to my site www.fms-help.com to
see if she could perhaps find any ideas there.
It is very sad, but there
is also a youtube video about a young woman who succumbed due to CFS. I
sent the link last year, but here it is again if you missed it.
This video is worth sharing with anyone
who doesn't understand what it's like to have severe CFS/ME (chronic fatigue
syndrome / myalgic encephalomyelitis). The post-mortem on this young woman
revealed that she died of a spinal cord disease and
should have been treated by a multi-disciplinary medical team, not put
in a psychiatric center!!! Brace yourself for the
video--
What is Myalgic
Encephalomyelitis?
(or CFIDS - Chronic Fatigue
& Immune Dysfunction Syndrome)
M.E. is
characterized primarily by damage to the central
nervous system (the brain) which results in dysfunctions and
damage to many of the body’s vital systems and a loss of normal internal
homeostasis. Therefore, although Myalgic Encephalomyelitis is primarily
neurological, symptoms may be manifested by: cognitive, cardiac, cardiovascular,
immunological, endocrinological, respiratory, hormonal, gastrointestinal and
musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have
been authentically documented in M.E. Symptoms are also caused by a loss of
normal internal homeostasis; the body becomes unable to make all the appropriate
physiological adjustments that allow it to maintain homeostatic equilibrium in
response to the changes to the internal and external environment that are part
of everyday life. The body/brain no longer responds appropriately to homeostatic
pressures, including (to varying extents): physical activity, cognitive
exertion, sensory input, orthostatic stress, emotional stress and infectious
stress.
Also see these pages on my site:
12.
DOM'S UPDATE
Our LABC School
of Music recital Friday night was WONDERFUL!!! I was so proud of my
students! 30 of them performed (age 6 through retired). They
played the piano, guitar, violin or sang. It was a LOT of
work putting this together, but such a joy to look back on. I would love
to show you a picture of our group, but I don't know the laws about putting
people's pictures on the internet, so I am erring on the safe side and leaving
the picture out. But for you ladies, I just wanted to mention that some of
the little girls had the most beautiful, feminine dresses - they looked like
angels! Many of them chose to curtsey instead of bow after playing
their songs, and they were just precious!
Hope everyone is
doing well, or as well as can be expected, given our FMS/CFIDS condition.
Topics 10 and 11 above were very important, so I hope
you checked them out (short video clips). I
will be sending out in a separate email quotes from a book called "Running on Empty" that a reader is sending me excerpts
from (about viruses, etc.) Most interesting.
Dominie
| 
100 Tips for Coping with Fibromyalgia &
Insomnia
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE
