DOM'S
NEWSLETTER
(for people with
FMS/CFIDS and neuro-endocrine-immune illnesses)
JAN. 23, 2007
Although I call this "Dom's
Newsletter," it really is YOURS! Thanks for all your
input. I sure do learn a lot from my readers! My personal comments are in teal
below. If you are "fibro-fogged,"
simply scroll down and check out the 22 PURPLE
TOPICS IN LARGE PRINT. You can find them easily and skip things that
don't apply to you. However, I didn't want you to miss any information or
encouragement that you might be needing right now! - Dominie dombush@bellsouth.net
1. READERS
WRITE
"I can't thank you enough for your wonderful
website www.fms-help.com. I came across it
by accident, and I am so glad that I did. Please, keep it up!
You will probably never know how many people you are helping."
"It really does make a difference in knowing
that I'm NOT alone, especially on the days that my
husband / kids / rest of the world can't relate to my illness (well,
she's not bleeding, so she must be OK)."
[See
www.fms-help.com/relationships.htm about relationships and fibromyalgia. The only people who
truly understand life our with FMS are those of us who have this
illness.]
"I lost everything including Ph.D professional
career... to this condition. To be treated like a malingerer
with a bad attitude while feeling like this is as devastating as the pain and
loss."
2. WORK
FROM HOME IDEAS NEEDED
"Hello. I need your help. You seem to be so
on top of what really is going on with all the new info on fibromyalgia.
I was diagnosed about three years ago and things have not gotten better
at all. I am out of work right now and will need to back within the
next 60 days. I would like to find a way to work from home. Can
you suggest any companies that are not cons that I could check into? I live in
Bethesda, Maryland which is five minutes from Washington,
DC."
3. MEMORY FOAM
QUESTION
From a reader--
"According to your recent newsletter article #8
BEDDING - i have been sleeping on a memory foam pillow
for my neck for absolutely years - did not know there were neurotoxins
associated with it - how true is that - could any one please let me know - i
have several major problems with my health - they are FIBRO - LOW THYROID - RA -
GROWTH HORMONE DEFICIENCY(taking shots for that) - VERY LOW ADRENALS - LOTS AND
LOTS OF PAIN - mostly from RA/FIBRO right now - so i would like to know if those
memory pillows ARE NOT HELPING THE SITUATION - i am very attached to my pillow
and sometimes cannot sleep without it - does anyone out there have any input or
more information?"
4. MYCOPLASMAS
(revisited)
Reader requests
feedback--
"I have a question for you
and/or The Fibro Team. My OB/GYN is suspecting that my
scanty periods and brown bleeding is being caused by a possible
infection in the lining of my uterus by some type of
bacteria or mycoplasma. I know that scientific
evidence supports that mycoplasma is either the direct cause or a significant
co-factor in the cause of chronic illness such as FMS and could definitely be
contributing my fertility problems. He wants me to go on a 3 week antibiotic
treatment of 1000mg of Biaxin or Flagyl daily.
Unfortunately, I am so sensitive to antibiotics that just 500mg
once a day at bedtime makes me terribly sick and
miserable. Did you say that you started taking
Hyperimmune Egg Powder to treat the mycoplasma or was there some other treatment
that you did to help? I did a search on the FMS help website and didn’t find
what I was thinking of for an article. Could you please help me out?
Been doing some more research online about what mycoplasma really is. YUCK!!!
Makes me feel so icky to know that these little nasty things are infecting my
body! I did happen to see that the University of Nebraska Medical Center and
Creighton
University Hospital both do mycoplasma detection
testing so I just need to work with my doctor to convince him that it’s worth a
shot to at least pinpoint the exact strain of mycoplasma that’s infecting me.
He’s planning on meeting with some specialist in New York to discuss treatment options for
women in my position so I’m interested to hear what they come up
with."
5. FIBRO & FATIGUE CENTER
(revisited)
Update from a
reader--
"I had my 2nd
appointment @ FFC. I am very impressed with their diagnostics & the
interprtation of the tests by Dr. Campo (Norwalk, CT). He is very
nice & quite understanding. One thing I will mention... is
that he prescribed me a natural remedy made from
'earthworms' for fibrin issues!"
"I had viruses which are now
gone. Dr. Campo at the F&F Center treated me with
artemisinin, a natural supplement which is made by Allergy Research Group, and
also a supplement called "Anti-Viral" supplement made by Ultraceuticals. I
buy them both at the F&F Center. I had a pretty bad healing
crisis with them, but they knocked out the viruses.
You can always
give my name and email address if anybody wants to contact me."
6. PARVO VIRUS B19
From a
reader--
"Back in 2000, I supposedly came
down with Parvo-virus B19, the human parvo at which time I was
on disability for 9 months. I became quite ill...My body was in extreme
pain. I couldn't do little things like turn door knobs, cut with scissors,
walk a short distance to pick up my mail, roll over in bed. I
slept a lot... Anyway, about three months later, I was diagnosed with
Fibromyalgia. My body has experienced pain from head to
toe...sometimes at a lower extremity but always pain ever since...There are
times I can hardly walk or roll over in bed. Sleep is very
disturbed. May 2004, this Fibro got worse and again I wasn't able
to work...I found a wonderful ND but no cures. I go to him for
neurotherapy and through his help, I have taken more control of my life. I
have been on disability since May 2004. I never quite know how I'm going
to feel. I must say that the injections help me keep my Fibro in
check. Until I found Dr. Jones, I was prescribed many different
medications, none of which were helping me. Anyway, it seems that
it was the virus that kicked in my Fibro."
7. LIDOCAINE PATCHES FOR
PAIN
From a
reader--
"I have had
Fibro/Chronic Fatigue for 7 years and I am on disability.
I have found a wonderful doctor that is willing to listen and try things that
might be unconventional. I have been with him 5 years. Back in
December I went in for my monthly visit and was telling him that I was having a
really bad time with my Fibro; I felt like someone had beat me up all the time,
nothing worked. He then asked me if we had tried Lidocaine
Patches? I said no. They are usually used for
Shingles. He gave me a prescription and I went to the pharmacy and had
them filled. My pharmacist had not heard of them being used for
Fibro. I brought them home and put them on, I was not expecting a lot,
but, I was surprised; they worked. It was amazing. The pain
was gone and I could move like I had never moved before. I could
not believe how fast they worked. The only drawback is that you can only
wear the patches for 12 hours at a time. You can use up to 3 patches at a
time on any part of your body, but you have to go 12 hours without the
Lidoderm in your system. Please pass this on to other
people so they can ask their doctors about using these patches, they might work
for them also. I used these at Christmas and my friends were surprised at
how comfortable I looked; not stiff and in
pain."
8. LYRICA
(revisited)
Reader #1:
"Have been taking this
medication (Lyrica) for about six months now. I have
really
improved with the pain with it, except my mind, memory, and etc
have
been a lot worse?? I have no idea if it is the meds, or just regular
FMS. I
have not had to stay in bed since September, which hasn't
happened in the
last 7 years."
Reader #2:
"It was hard for me to
use Lyrica with my other
nite meds, as I was drugged for
3/4 of the day. I intended to then
gradually reduce my other nite
meds. That was taking too long, and I got
discouraged knowing I could
not stay in the house or the car for much
longer or stagger around the
house. I even took the 50 mg. several hours
before bedtime to see if
that helped. HOWEVER, I discovered that the prescription was for 50
mg.
and then discovered
there was a 25 mg. available. So I am now waiting to receive the new lower
script. I think that Lyrica
helps with my pain during the day
and something about my sleep is better
with it, so I am
hoping the 25 mg. works. I will then work on reducing
some of my other
nite meds gradually, of course , to avoid rebound.
and hopefully not
be drugged during the day. Also, it can be used during the day for
pain, and not just for sleep.
I would encourage those who are curious to try
it, but at the lower dose first."
Reader #3:
"I took Lyrica for 6
months. It worked WONDERFUL! I had a lot less pain.
However,
I gained about 30 pounds. I stopped taking it due to the
weight
gain. But other
than that, I had no other side effects, and I felt a lot
better when I was on
it."
Reader
#4:
"I've been taking
Lyrica for almost 2 years now because I also took it in a study when it was
experimental. It definitely takes the edge
off my pain. I take 300mg at bedtime which has
been wonderful because I am able to sleep through the whole night. It does make
me a liitle sleepy during the day and sometimes dizzy so I only take it during
the day when my pain is unbearable."
9. GOUT & FIBRO
"I had
bunionectomies on both of my feet over 15 years ago. Over the
last few weeks, both of my feet have been hurting, all over, but mostly on the
joint of the big toe where I had my surgery. Tonight I fell to the ground
in excruiciating pain in my right toe mostly and started reading in my medical
books. I'm wondering if I have gout and am heading to the Dr. in the
morning if it is still bad, even if it isn't. Have you had many
fibro friends who have gout along with the Fibro and I'm wondering if the uric
acid buildup is part of the fibro? Have you learned or researched
anything on gout and it's relationship to fibro? Any help would be greatly
appreciated. And of course, if you have any natural remedies as I was
reading and most of the drugs the Dr. may prescribe may be really hard on my
stomach. Please help."
10. MOBIC
From a
reader--
"I and also a friend who has FMS have tried
Lyrica. Neither of us stayed on it for more then two
weeks. I even stopped and tried again with several adverse side effects
and not much relief of pain. I have now been trying
Mobic (Meloxicam). Anyone out there have any
comments on this drug? It has greatly relieved pain.
Side effects noticed are tiredness, a little heaviness in chest, gas and
wanting to nibble between meals. I have stayed on the 7.5mg even
though I was supposed to go from 7.5 after the first week to 15mg after that;
each 2 x day. Being very sensitive to drugs, I chose to stay
with the 7.5mg, I have recheck with doctor in one week so not sure what his
comments will be. You may use my name and email if
people want to contact me directly." - Sharon coaks@mncable.net
11. VITAMIN D DEFICIENCY &
FIBRO
From a
reader--
"My nurse
practitioner (who has done so much more for me and all of
the doctors I've
seen) told me that she read some research that linked
vitamin D
deficiency to fibro, and bone pain especially in African
American
women. So she has me on a once a week vitamin D supplement. I'll let
you
know how it works."
12. NARCOLEPSY & FIBRO
SLEEP DISORDER
From a
reader--
"I have had FMS/CFS since 1992. But, I also was just diagnosed
with Narcolepsy/Cataplexy. I've read many stories on your site
where people are having sleep problems. I wonder if any of these people have
tried getting a sleep study. I have had years of feeling very
tired, all the time and slept all the time too. I always chalked it up to
chronic fatigue that goes along with the fibro. I never though it could have
been something more, such as narcolepsy.
13. DR. BOWERSOX
PROTOCOL
From a
reader--
"This has helped me immensely and he has cured so many
people. Please check this out. He uses homeopathics - no side
effects - only results.
http://www.recoverfromfibro.com."
14. GENE MUTATION THAT
INHIBITS FOLIC ACID METABOLIZATION (revisited)
From a
reader--
"Thanks to a reader [see
www.fms-help.com/011007.htm, topic
#7] I get a better product for my
gene mutation that inhibits
folic acid metabolization as this product is the converted form of folic acid
that my body needs as opposed to a product that only "helps" with metabolization
and I get it straight from a speciality pharmacy at get this
$16.95 per month Instead of $350.00 per month! I can't thank
you or your reader enough."
15. DRY
SAUNA
From a
reader--
"I have a far infared dry sauna. Ever
tried one? Any info on results from one? My husband and I both use
it. The first 90 days, I didn't sweat, thus very toxic. Now I sweat
tons! Excellent!"
16. VALCYTE HELPS CFS
PATIENT
From a
reader--
"
See http://www.msnbc.msn.com/id/16635440
- Male
founder of Pet Smart (pet supplies company) gets well
from CFS with antiviral drug, Valcyte. Incidentally he became ill after a hiking
trip - makes one wonder if Lyme or some other agent is an issue in transmitting
this disease."
17. NATIONAL FIBROMYALGIA
ASSOCIATION
From a
reader--
18. NATURAL STEM CELL
PRODUCT
From a reader--
"
StemPlex (natural stem cell product) is helping me sleep
better, better bowel movements, hardly any pain, I do not have severe
restless legs but it has helped what I had.
www.simplexityhealth.com/joanne"
19. VARYING DEGREES OF
FIBROMYALGIA
From a reader--
"It sounds as though your new reader [see
www.fms-help.com/011607.htm, topic
#1] did not know what her ailments were up until seeing this new doctor.
Am I reading this correctly? She just got a diagnosis? That really is
amazing given the fact that many doctors seem to label just about everyone as
having fibro simply by saying they have "sore muscles" or "my arm has
been aching for a while." I cannot believe the amount of people I
run into anymore who
claim to have fibromyalgia, yet they're working
these jobs where they have to lift heavy things or be on their feet all day,
or do something else that I would never be capable of doing.
I'm just dumbfounded when I hear this!
It's almost
humilliating and makes me feel weak or that my level of fibromyalgia is not
legitimate. I have so much
debilitating
pain that I cannot even work. I suffer in
severe pain. I battle
this on a daily basis, yet these people who claim to have the same thing
that I have say it in a way that it is no more to them than a
toothache! Then you have people such as this new reader who's been
suffering for years yet she's never had a diagnosis, I just don't get
it. I'd like to say that I am very happy for this new reader to
have found your site, a place to feel comforted in especially since
she's no doubt been so alone in her struggles for such a ver long
time. I too am happy to have found your site. You are a comfort to
us all."
[I soooo get the point this reader is
making!! There are varying degrees to this illness - or maybe doctors are
now using FMS as a wastebasket diagnosis! I suffered debiliating
fibromyalgia for 14 years before finding significant relief in 1996. As a
Type A person who loves to work, this was absolutely devastating! My
personal fibro story is at www.fms-help.com/fibro.htm...and
don't you just love it when people say, "Well, I get tired
too!!"]
20. TREADMILLS
BAD?
From a reader--
"Just came back from the chiropractor and he
said to lay off of the treadmill and just walk outside. The
treadmill is a chiropractor's best friend and causes
lots of hip pain especially for people with arthritis or
fibromyalgia."
21. SLEEP NUMBER
BED
From a reader--
"
I wanted to tell you
about my experience with the Sleep Number bed....Having FMS for
over 20 years now, and still in terrific pain no matter what I do, decided to
get a sleep number bed. I have had it since May 06, and also put a
3 inch memory foam topper on it [SEE TOPIC #8 ABOVE] , although really not needed,
but I had one. I slept like a baby for the first 4 weeks...then
little by little, the insomnia came back....the bed has helped
tremendously with the horrible back and leg pain I have, at least I can get out
of bed now without having to take my pain medications first and then wait for
them to work to be able to get out of bed. However this insomnia is
driving me nuts...I have done everything I can...temazepan helps sometimes, but
the other sleep meds not really. I am on strong pain meds and have
been for years...without them, I can not function. The pain is so
bad that I want to commit suicide. [SEE MY
PAGE AT www.fms-help.com/suicide.htm and also www.fms-help.com/misery.htm.]
I mean, the pain is probably an 8 on the scale, but it is unrelenting 24/7...it
doesn't give you a break!!!....my fibro fog fluctuates from one day to another,
sometimes it isn't even there, other times I feel like I'm getting
alzheimers.....my sinus problems are there also and don't go away.. also on
blood pressure meds...I'm a person that would not even take an aspirin and this
all started now that I think back in my early to mid thirties...it came on
little by little...not much was known about it then...so I just thought of the
troubles I was having as "getting older"...well, just wanted to put my two cents
in....wanted to let you know how I liked the Sleep Number bed..to me, expensive,
but worth it...I got the mid price model and am happy with
it."
22. DISABILITY FOR FMS
"I'm 35 years old and
have been on state disability for around 4 months out of the past 3 years.
Fatigue and totally frustrating brain fog
(lack of memory/focus, confusion) combined with the
anxiety of having those symptoms (which makes me anxious about
being anxious...) has all but rendered me useless in my current profession of an
Executive level admin. assistant. I suck at my job...I can't keep things
straight, even with using severely over-organized information, (which
makes me look careless, forgetful, and unfocused) and am a complete wreck
totally devoid of energy after 3 PM. I'd like to know if anyone
has gone through the similar thing, if they were able to work at all, or if they
ended up filing for Federal Disability. From some of the things I've read, it
seems like it is nearly impossible for a claim of Fibromyalgia to be recognized
by the Social Security Administration... I just want to weigh my options. I
did read through your disability page, and there are many very good tips and
much encouragement. I noticed how one individual mentioned feeling
"guilty" for going on disability...which is where I am. It is so hard
not to be a part of the working world...and I do feel guilty that my husband and
kids have to deal with the shortcomings... "
To find topics mentioned in my newsletters since 2003 or
anywhere on my FMS/CFIDS website, use the
Google search box below. If you missed any
of my newsletters and want to read back issues, go to the
archives at
www.fms-help.com/newsletters.htm.
Dominie Soo
Bush
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