DOM'S FMS/CFIDS
NEWSLETTER
April 14,
2007
Topics are in PURPLE. My comments are in TEAL. - Dominie
URGENT WARNING - SEE #11.
1. READERS
WRITE
"Thanks so much for your newsletter. It
is wonderful!!"
"Intriguing
information."
2. SKIN CRAWLING
SENSATION
Reader
1--
"Yes I had it and still do but not as bad. I
initially thought there were bugs crawling all over my face and in my hair. I
sprayed my entire
bedroom with a bug spray. Then I realized it was from the
nerve damage from my auto accident. It took almost 2 years before it
quieted down, but it does get better. If you fell or had any trauma or
nerve damage it may be the cause. Once I started to take a
sedative at night it seemed to calm down. But it drove
me crazy. Good Luck."
Reader
2--
In regards to #2 SKIN CRAWLING SENSATION...I
have had this symptom. For 9 years I thought I had Fibromyalgia & I recently
found out that it is Lyme Disease. This may be a symptom of
Lyme. I have also found out that about 90% (or more) of people with
Morgellon's Disease also test positive for Lyme. Morgellon's
Disease is a very painful & devistating disease that some poeple suffer
through. Many of the doctors dismiss this illness as a psychiactric disorder but
I don't think it is. If there is a relationship between Fibro, Lyme, &
Morgellon's Disease, it may explain why people may feel the "crawling"
sensation. Lyme is a parasite similar to Syphilis & it lives in between the
cells. I'm not an expert but I feel this may be the reason some of us experience
this symptom. Please do further reasearch into all of these illnesses as a
potential cause of your "Fibromyalgia" if you suffer from this symptom. ***
Please note - facial paralysis can be a symptom of chronic Lyme Disease or other
viruses such as herpes. It's called Bell's Palsy (http://en.wikipedia.org/wiki/Bell's_palsy). Please research it further to find more info about this. There is
alot of info & support on the internet. be sure to find a Lyme Literate
Doctor to help you with this issue if you feel you may have Lyme
Disease.
About Lyme Disease--
Reader
3--
"From a friend 59 years in massage and
alternative health -- crawling things can very well be parasitic
worms (people get them just like dogs or cats). Go on an organic
apple juice only diet for threee days and evening of 3rd day take 4 oz of oil
(olive) and lay down near convenient bathroom. Wait 10 days
for eggs to hatch and repeat. Do yearly. Good luck and prayers are
with you."
Reader
4--
"I have the
same skin crawling sensation. The skin crawling is actually pretty
interesting. I have myofascial and the crawling goes from nerve to
nerve to nerve. I will feel like a walking anatomy lesson some
days. What isn't fun is the pain that comes right after the crawling
sensation stops. It is almost as if my body is "pinging" the various
nerves to see if it is worth sending a pain jolt through the circuit.
Ha! It makes me laugh."
Reader 5--
"Regarding question #2 at www.fms-help.com/041107.htm,
please tell her about restless leg syndrome. It can drive
a person over the edge and many times it goes along with Fibro. It can
make a person feel all sorts of other things too and it will drive you
crazy. You may use my email address." Judy miyas@cptnet.com
Reader 6--
"The woman who mentioned all of the skin sensations--check for
parasites. Also, I had that when I was full of
heavy metals (hair testing showed some and DMPS showed
more.) Also, oddly enough when I had the really bad tingling and nerve
stuff, it turned out I had suddenly become allergic to wheat and tons of
other foods. Most blood tests don't show this. The House Ear
Clinic in LA is a good place."
Reader 7--
"This is in response to the person who has the skin crawling feeling in the
face and also numbness too. I also have that. When I was in my late
twenties I had trigeminal neuritis. My neurologist treated me with an anti
seizure drug and I never had it again but since that time I have had those same
feelings as described. My hunch is that there was some kind of nerve
damage. Recently my doctor had my vitamin B level tested and I was
low even though I take vitamin B pills. She switched me to
sublingual B vitamins which are absorbed by the body better
and I have noticed a decrease in the creepy crawly feelings! They are
realtively cheap and very safe so I think it would be worth a try. I did mention
the sensations to a different neurologist a couple years ago and he
ignored what I said. So before going to a neurologist, how about a vitamin B
test?"
3. WHAT'S
HELPING
From a
reader--
"Since I have been taking
magnesium and malic acid, glucosamine, vitamin B complex, and clonazepam
for sleep and as a muscle relaxant, my symptoms are really better. I
think the supplements must be of good quality. I have also severe tinnitus, now
I am trying ginkgo biloba."
[If you would
like to share meds, supplements or protocols for managing your FMS/CFIDS, please
write me at dombush@bellsouth.net.]
4.
FIBROMYALGIA & FATIGUE CENTER
[revisited]
From a
reader--
"Since I have gone to the Fibromyaliga &
Fatigue Center, I feel that there is a logical explanation for
why we all are ill. It's just that not everyone is able to go to a physician who
has the expertise to pinpoint the causes of our illnesses or the money to afford
proper treatment. It may not be 100% of us who can find the complete answer, but
I have found the Fibromyaliga & Fatigue Center to be very helpful in the
search for the cause of my own symptoms."
[But are they
actually helping people get better? A lot of readers would like to
know. If you have been treated at an F&F Center, please
write me at dombush@bellsouth.net.]
5. CHECK
YOUR DRUG INTERACTIONS
From a
reader--
"I
just checked out your 'Check Your Meds' page at www.fms-help.com/meds.htm, and the link
there (www.aidsmeds.com/cmm/DrugsNewContent.asp). The site gave a different result for my combined list of
meds, than the drug interactions 'checker' I have been using for some time,
which is http://www.drugdigest.org/DD/Home and click on the 'Check Interactions' button. I will be
checking both sites from now on. If you wish, please pass on to your
readers the DrugDigest link above, as another resource they can
use."
6. SLEEPY IN THE
DAY - WIRED AT NIGHT
Female volunteers sought for study of sleep & immune function
in CFS
by Editor - Immunesupport.com -
04/09/07
"An
ongoing NIH-funded research project at the UMDNJ* Pain & Fatigue Study
Center in Newark, New Jersey, is exploring the theory that “malfunctioning”
cytokines in the blood of Chronic Fatigue Syndrome patients are responsible for
making them sleepy during the day and “wired” at night. A successful outcome
could lead to corrective therapies, the researchers say. The project – "Sleep and Cytokines in CFS" – is
seeking relatively sedentary female volunteers (CFS patients and healthy control
subjects) in the New York/New Jersey area. It is led by Benjamin Natelson, MD,
professor of neurosciences at New Jersey Medical School and Co-Director of the
Study Center. See
7. DISRESPECTFUL
MEDICAL TREATMENT
8.
ADRENALS
From a
reader--
"I had saliva testing done which showed a
complete absence of adrenal hormone in the evening (not just low, but not
detectible). So this interested me in trying Dr. Murphree's adrenal support,
which I think was helping."
9. LOW DOSE
NALTREXONE
Got these links about
low dose naltrexone from PANDORA--
10. SURVEY
PARTICIPANTS NEEDED
Got this information
from Shari Ferbert of AAFTER--
AFFTER is conducting a
research project for FMS and I hope to enlist your participation. The study
is in the form of an on-line survey that is simple and brief;
the purpose being to evaluate the symptoms and characteristics that
people with fibromyalgia share. We have a deadline of
April 18th and the more participants we have, the more meaningful the
study will be. With your help we can collect information that may enable
further research for fibromyalgia. We are circulating two
versions of this survey; one for people WITH fibromyalgia, and the other for
people WITHOUT fibromyalgia for use as a control group.
11. AMBIEN
WARNING
From a
reader--
"I would like to comment on the problem with
ambien; I had been taking it off and on for a year. I live alone so I was
unaware of the side affects.....until one morning I woke up about 4am, went into
my kitchen, to my horror!!!! I had been cooking all night, had my food processor
out, burn food on the stove, cooked everything from mash potatoes,
to marcaroon and cheese, and the mess!!! IT scared me so, as I could have
burnt the condo down............I found my ambien bottle in my pocket
book.....with six pills missing. Later I found four on the floor. I had
take one, and obviously forgot and took another. I work in a hospital, went to
the pharmacy and asked about the side affects; they stated "amneisa".I filled
out a form and set it to the FDA telling them of my experience. When I mention
what happen to my family, my cousin stated she had a horrible experience. She
work up to find a fresh cup of Dunkin Donuts coffee and muffin by her bed;
she had gone out and "drove"..........and like me remembered nothing.
I tell the doctors at work as it is a popular sleeping medication. Hope
this is an eye opener for your readers. I would strongly suggest
those who live alone, not take it. I was taking only
5mg!!!"
[See my sleep page at
www.fms-help.com/sleep.htm for a list of things I've tried for sleep. I presently take
1/3 to 1/2 of a 10 mg ambien tablet at night (for a total of 3 to 5
mgs). It causes some amnesia and also stimulates appetite! I
wonder when this drug was in its trial run if the pharmaceutical company noticed
these things. Be very careful when using ambien
and take the very least amount needed.]
Well, that's all for now! It's so true that only those of us with
FMS/CFIDS understand what it's like to have this illness. Check out the
fascinating links on my homepage at
www.fms-help.com. Look in the yellow
box on the left. Kind of surf around, and I know you will find LOTS of
helpful things!
Dominie Soo Bush
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