DOM'S
NEWSLETTER
SEPTEMBER 25,
2007
A compassionate
informative newsletter for people with Fibromyalgia (FMS),
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (M.E.)
TOPICS ARE IN
PURPLE. MY COMMENTS ARE IN TEAL.
Don't
miss:
#3 SICKO -
health care is not free
#8 GET OVER IT -
so says this fibro doc
#11 ANY SUGGESTIONS? - reader desperate
#19 STOMACH VIRUS CAUSES
CFS? - new
research
#23 DOM'S UPDATE -
enjoying life!
1. READERS
WRITE
"Thanks so much for your newletter and website! They are very
informative and full of wonderful information."
"Please keep up your wonderful work. I know I look
forward to your newsletter. It shows me that I am not alone,
and there are so many wonderful people out there suffering with FMS. You
give us hope. Thank you so much for that."
"I have learned a lot from your website as a fibro
newbie."
"Just wanted to say, because I don't think I
have before, how much I love your site. Reading other people's words that could
have been written by me gives me comfort. I am not as alone as
I feel."
"Great website!"
"I have been looking at your tips www.fms-help.com/tips.htm and have decided to try
a number of them out and see if they help me!"
"I
just ran across your page www.fms-help.com and I absolutely
love it!"
"Thanks again, Dom, for such a wonderful and informative
newsletter."
2. PROBIOTICS, SUGAR,
YEAST & BACTERIA
Excerpt:
Most people have no idea that the number of bacteria in your gut outnumber the
cells in your body by about 10 to one and you have about 100 trillion
bacteria in your colon. Many experts believe one of the major mechanisms of
disease is related to the bacteria growing in your intestine. This is one
of the reasons why sugar really devastates your health. Not only does it
disrupt your insulin and leptin levels but
it is an incredible fertilizer for growing bad bacteria and yeast in your gut.
It does far more than cause yeast and Candida to grow, the anaerobic bacteria it
supports are probably even more dangerous than the yeast. When you eat a healthy
diet that is low in sugars and processed foods one of the major benefits it
produces is that it causes the good bacteria in your gut to flourish and build
up a major defense against the bad bacteria getting a foothold on your
health. A high-quality probiotic is the one thing I take myself and advise
all my patients, family and friends to take with them when they travel
overseas. Although this recent study cited above only partly bears this out, I
suspect there are reasons for this discrepancy. For one, there are many brands
on the market, but many of them contain insufficient quantities of bacteria. In
fact, a study a few years back found that
one-third of the probiotics on
the market were worthless and did not
have the bacteria they claimed in the bottle. Additionally,
when treating acute infectious diarrhea,
large therapeutic doses are
required (typically an entire bottle over a day's time or about an eighth of
a bottle every hour until the problem is resolved). Most often, the symptoms
will subside within four hours. Using a probiotic is one of the most
amazingly consistent approaches to managing travelers' diarrhea I have ever
seen. In addition to a lot of lousy products on the market, there are many good
ones.
3.
SICKO
From a
friend--
http://www.capmag.com/article.asp?ID=5011 -
"Single-Payer" Health Care Is Anything But Free - by Paul S. Hsieh,
MD (September 17, 2007) - Excerpt: "Michael Moore's
latest movie "SiCKO" sings the praises of the Canadian "single-payer" socialized
medical system. Some Americans want a similar system implemented in the
United
States. Defenders of the Canadian system
frequently claim that patients don't have to worry about money when they're
sick--the health care is free. But is this really true? No.
First, it is ludicrous to think the system is free. Each citizen is forced
to pay for his neighbors' medical care in the form of high
taxes. (As a percentage of GDP, total taxation is 28 percent higher in
Canada than in the
United
States.) The government, rather than
individuals, then decides how that money is spent."
4. URIC ACID, M.S.
& GOUT
From a
reader--
"I was reading your newsletter www.fms-help.com/091807.htm and
something grabbed my attention. I recently had a CBC (Blood Work) and discovered
something pretty interesting. I tested very low
for Uric Acid @ 2.2 (Reference Range) 2.4-8.2. I realized that
this had not been tested since 1996 and when I looked at THAT test saw that it
was 2.0 even back then and my doctor said NOTHING! The reason this is critical
is that when I started doing searches on the Internet such as (“low uric acid”
causes) I found a definitive connection between
LOW URIC ACID and MS (Multiple Sclerosis). The majority of MS patients
have very low uric acid and when it is raised by either specific drugs (which
have side effects) or Inosine, available
over the counter, (which is now in phase 2 of clinical trials) patients see
remission or stability of their condition. Molybdenum, also available over the
counter, raises Uric Acid as well. HIGH URIC ACID can and does cause
Gout and even more interesting is that almost without exception Gout patients NEVER get MS and MS patients NEVER get
Gout. And the connection? Uric acid levels. I’ve been battling with
neurological symptoms for over a decade that are similar but not exactly like
MS, Fibro and also Adrenal Insufficiency as well so for me this is big
revelation. I would encourage the reader who was concerned about MS to have her
levels of Uric Acid tested as it may provide a clue."
5. GUAIFENESIN & BLOOD
PRESSURE
From a
reader--
"I just have a comment to make about this treatment. A
friend of mine that also has Fibro told me about this product. I tried it
especially for my back pain. It caused alot of coughing up mucus for the first
couple of weeks or so; but was well worth it for several months. Then I started
feeling really weird and decided to check my blood pressure. It was 175/115.
Very high. My blood pressure had always been normal. After this I stopped taking
this product and my BP is back to normal. However so is the back pain. But I can
live with pain better than risking a heart attack or stroke from the high
BP. Just thought I would tell you my story on this. People really need to keep a
close eye on their BP if they decide to try this."
6. METABOLISM
Please respond directly to
Jo jodavidson@mac.com--
"Does
anyone have any idea how to speed up metabolism? After years
of this illness I suddenly now have a slow metabolism. Has anyone had
any experience with a product called Fucothin that is being promoted
by Jordan Rubin?"
7. FIBRO
HEREDITARY?
From a reader--
"I have been thinking for years that Fibromyalgia is
hereditary or at least a predisposition to
it. You see, I am 60 years old and have suffered with FMS for about 20
years now...long story..however, I remember my mother had problems and thinking
about this, her problems were identical to what we suffer with the FMS. Of
course, nothing was known about FMS at that time. I have two
sisters. I am the oldest, and both of my sisters have FMS among other
things. Now my nieces are in their 30's, and they are both showing
signs of the FMS...strange, isn't it? To me it shows there is some kind of
link here."
8. "GET OVER IT," SAYS FIBRO DOC
SCHERGER
From a reader--
"Doctors like Scherger www.fms-help.com/091807.htm, which
I've had the misfortune of going to in the past, give new meaning to "Hypocratic
Oath". They are hypocrites! As someone who tried not once, not twice, but three
times, at least, to "get over it", I know for a fact that pretending it doesn't
exist is not the way to improve. In fact, each time I attempted to "wish
it away", "will it away", "pretend" it away in order to just "get over it", I
developed new symptoms and worsened the ones I already have. Proceeding
as if one does not have this, and pushing oneself to live what I refer to as a
"normal life", working at least 40 hours a week, commuting, taking care of a
household, etc., does not make this better. If it did, I would be cured! I wish
doctors like this would have been able to come live with me during those times
that I tried to "get over it" and see what the results were (frequent
hospitalizations, nearly dying). Doctors I had been seeing at the time
could not believe how much worse I got trying to "get over it" and one even
dismissed me as a patient because he was so angry that I had not followed his
advice to not go back to work and not push myself. I can't wait to see this
doctor, as he ages, develop health problems so we can write him and tell him to
just "get over it". With our luck, he'll drop dead of a sudden heart attack,
leaving us without the satisfaction of uttering these words to
him."
9. SLEEP STUDY COMMENTS
From a
reader--
"I had two sleep studies done and was allowed to take
my meds with both of them. Even with the ambien and soma I slept only 3
1/2 hours the first time and 5 hours the second time. They told me I got
no deep sleep and had over 50 arousals of alpha waves into delta waves. My
sleep doctor thinks I do have upper airway resistance syndrome and they just
don't know how to diagnose it. He tried to get my insurance to cover a
trial period with a CPAP machine to see if it improved my sleep, but they
refused. I would have to use the nasal pillows as I am severely
claustrophobic and could not handle a mask on my face. Even when I have
surgery they have to lay the mask by my nose till I go to sleep or I go into a
panic attack. I do know that I get much better sleep at home most of the
time than I did at the clinic, but some nights I still sleep poorly. Using
a lightbox every morning for half an hour helps me get to sleep at a decent
hour, but I still wake up early and cannot get back to sleep. I take
ambien 10 mg and soma 4 nights a week and 1.5 mg of klonopin along with an over
the counter sleeping pill the other 3 plus melatonin nightly. I have found
that the generic for ambien just does not work well for me and my pharmacist
said if they just gave me the name brand it would cost me a $65 dollar copay,
but if my doctor calls it in that I need the name brand then my copay is $39
which is $20 more than the generic but so worth it. So my next refill I
will have Dr. Pellegrino call in the name brand. I want to see if it is
truly the generic causing me problems or if I am just going through a rough
patch in my sleep. Right now I am sleeping a little better due I think to
having surgery this past Wednesday to remove a melanoma from my leg. The
anesthetic makes me sleepy for a week or so which has been a
blessing."
10. ANTIDEPRESSANTS & WEIGHT
GAIN
From a reader--
"As for antidepressants for sleep, it took huge amounts of
elavil to get me to sleep and I gained a huge amount of weight in a short period
of time plus was totally hung over the next day. I had the same problems
with trazadone. I now refuse to take antidepressants as for me the side
effects are much worse than the problem being treated!"
11. ANY
SUGGESTIONS?
"I have been getting your newsletter for about a year. I am
soon going to be homeless, I can't work, can't get disability since I don't have
enough work credits and my alimony is ending. No help from legal aid and can't
find an attorney to do this pro bono. In addition I have spinal Stenosis and
degenerative disc disease in addition to A lung disease. I am so depressed and
worried. There seems to be no help. Prayers are needed. - Blair"
12. CALCIUM & MAGNESIUM
MAKE READER FOGGY
From a
reader--
"I am one of your devoted readers and am so grateful for all
that you do. You are amazing! Although I try to make intelligent
choices (after all, I am a UCLA alum like you) I discovered that I was doing
something helpful that was causing another problem. In addition to
the usual FM pain, I have been struggling with debilitating fatigue and brain
fog. I still work full time as a CPA and was getting very concerned about
the ability to do my job. I have dutifully been taking Calcium /
Magnesium supplements three times a day to prevent osteoporosis. In
a light bulb moment, it occurred to me that perhaps the Calcium / Magnesium (I
know sometime used to help people sleep) was making me sleepy and foggy.
Guess what? I switched my Cal/Mag supplements to bedtime only and
I am much more alert and feel so much better. I can't believe I did this
to myself! I just thought I would pass this information on to you
in case any of your readers are making the same mistake I made. I ordered
your vitamin mineral supplements but still felt tired and foggy after taking
them. Now I know why! Can't wait to see the difference."
13. CFS PAGE FOR
DOCTORS!
From a
reader--
Most of us have to educate our
doctors about FMS/CFIDS/ME! This article and others (print them out and
take the articles to your doctor) can help. Some doc think they know
it all and don't welcome input from patients, but the best docs are open to new
information. Personally, I will not return to a doctor who doesn't
understand (or care about) my condition or be willing to learn. When you
think that most doctors are scheduled to see 6 patients per hour, there isn't
much time for chit-chat during your appointment. Leaving him/her some
printed information to read might help. Or send the information
ahead of time before your appointment. Just remember that doctors can't
work miracles with this illness. They can prescribe drugs that may or may
not relieve some symptoms (usually the side effects are so negative that they
offset any positive). I have a list of things I'm using now at www.fms-help.com/what.htm - I
have had my life and functionality back since June 5, 2007! Thank
God!
14. DOES YOUR
ANTI-PERSPIRANT CAUSE CANCER?
15. THE MORE YOU
SLEEP THE LONGER YOU LIVE??
16. VITAMIN D
DEFICIENCY & FIBROMYALGIA
From a
reader--
17. MISINFORMATION
WARNING
From a
reader--
"While I realize that comments in
your newsletter come from readers and not from physicians, I am concerned about
much misinformation that is being spread among readers who do not differentiate
between fibro symptoms and concomitant symptoms of other disorders, such as
depression, arthritis, etc. I have several
disorders that can interact with fibromyalgia: depression, PTSD, GERD, IBS, TMD,
asthma and osteoarthritis.
It is very important to realize that while these disorders may impact
each other, they are separate disorders, and one must consider
the consequences/symptoms of these disorders separately. I am very
concerned that many people attribute or relate practically every symptom they
have to fibromyalgia, which among other things, can result in their not
getting appropriate treatment for those disorders. I would like to see you
remind your readers of this on a regular basis."
18. BURNING
SENSATION
From a
reader--
"I don't get
an all over burning, but certain foods can trigger a form of
neuralgia in my shoulders and arms, and my skin becomes so sensitive
that a simple touch triggers the burning. Sensitivity to any kind of airborne
pollutant, but especially scented junk like air fresheners, fabric softeners,
shampoos, detergents, perfumes, colognes, body washes, etc. can start it up,
also for me they can trigger instant migraines, nausea and vomiting, brain fog,
intense drowsiness or even asthma symptoms. Start with simple things, test them
out one at a time til you find your triggers, then avoid them if you can.
The sleep disorder is the key for me, once I had it under control the
other stuff is better,except for the airborne junk which still remains
a problem."
Interesting. Restorative sleep helps the immune system heal
your body. Allergies and chemical sensitivities are indicators of a
malfunctioning immune system (probably a revved up one). Those of us with
chronic insomnia know that everything goes downhill when we are
sleep-deprived. You can read my insomnia story at www.fms-help.com/insomnia.htm and a list of things I've tried for sleep at www.fms-help.com/sleep.htm."
19. STOMACH VIRUS
CAUSES CFS?
Article from
readers--
"Various viruses have been shown to play a triggering or
perpetuating role, or both, in this complex disease. Microbes which have been
shown to trigger CFS/ME include enteroviruses, Epstein-Barr virus, Chlamydia
pneumoniae, parvovirus B19, Coxiella burnetii, Borna disease virus, Varicella
Zoster virus, cytomegalovirus, and human herpesvirus type 6 (HHV-6). Chronic
microbial infections which have been documented in CFS/ME patients include
Coxiella burnetii, parvovirus B19, Chlamydia pneumoniae, hepatitis C,
enteroviruses and human retroviruses. Virus reactivations in CFS/ME include
Varicella-Zoster virus, Herpes Simplex virus (HSV) (increased frequency of cold
sores) and EBV."
20. MUSCLE TIGHTNESS
"I have been doing some studying on Vitamin D
and have learned so much. My dr. just put me on 5,000 i.u. of vitamin D to
see if it will raise my levels since they have been so low (29 was the latest
and the highest I've been). I will give you an update when I am retested
to see what the difference is. I am so thankful to hear that it is
common with fibro. I never knew that before. I have been trying to
get out every day and walking. That puts me in the sun at least 10 to 15
minutes. Don't know yet if it helps. I will probably get tested
again next month but don't know yet. Could you ask your readers if
they experience tight thigh muscles. They have been
miserable for a few months now. This is something new for
me. - Shirley"
21. STRESS
& FIBRO
From a
reader--
"I read with fascination the article you
included in your newsletter of Sep 18 www.fms-help.com/091807.htm about
the hippocampus. I think there may be a lot of truth to
this. No one talks about it, but I bet 99% of people with fibro
have experienced severe or long lasting stress in their lives. I
know I have, due to relationships, upbringing, etc. Maybe fibro is like
Diabetes II - you stop producing enough insulin, just stop, and develop
diabetes. Maybe with chronic stress you just convert all your dopamine to
ephinephrine or norephinephrine (stress hormones) and are constantly under
stress, which you learn to live with, and can no longer turn this pathway
off. But when you go to sleep you do not get a restful sleep because you
do not get rid of "waste products" from your cells and these build up over a
long time. I've attached an interesting theory of sleep which made sense
to me. I have been trying to "get rid of toxins" lately by taking
wheatgrass. (It's supposed to do that.) First thing
that happened to me was that I could not stay awake when I took it. Have
to take it at bedtime as it absolutely exhausts me. If I take too
much (for me that's 7 pills and the max is 20) I get terribly depressed and
anxious, so I can only stand 4. I just wonder if, because of being
constantly stressed, that causes us to be unable to get a rejuvenating
sleep which prevents our bodies from cleansing and getting
refreshed. How many people with fibro also have sleep apnea? There
seem to be very many from your articles on apnea tests. Adenisone is a
chemical that is connected to falling asleep. If that is blocked we cannot
sleep. Stress hormones would block that. Evidently adenisone
increases the longer we are awake and when it is high enough we will
sleep. If this is blocked by low constant levels of stress hormones we
cannot sleep properly. Scientists are looking at the role of adenisone in
sleep apnea. I really think that the key to this is restful sleep and what
is preventing it - over production of stress
hormones."
22. NAC
(ANTIOXIDANT) DANGEROUS
23. DOM'S
UPDATE
I've been feeling good
since June 5, 2007! What a relief to not be suffering and struggling
through every day! I had forgotten what it was like to be a normal
person. I am able to travel, work and keep up with my
responsibilities. Life is a JOY once again!
I still don't do
mornings, but fortunately I have a job (teaching music www.fms-help.com/students.htm)
where I can schedule my students in the afternoon and evenings. I
also serve as administrator for the school now.
I have tried
soooo many things since 1982 to help the numerous debilitating
aspects of FMS/CFIDS - see my personal story at www.fms-help.com/fibro.htm. I
finally have a regimen that works for me - a list of things I'm using and
doing are at www.fms-help.com/what.htm. Different things work for different people. There's no
"magic bullet" or "one size fits all" solution. It takes a lot of
experimentation to find things that help - I have felt like a guinea pig
for the past 25 years!
Many of the things on
my list www.fms-help.com/what.htm
have a 30 day money back guarantee, so that is always good! Too bad docs
and pharmacies don't refund your money if their treatments and drugs don't help
ypu. We've all had a "cashectomy" over the years
looking for things to relieve our misery.
My longtime
readers know how awful my health has been. I am amazed to be
enjoying my life and work again! I would have never believed it,
because It has been many years since I felt any enjoyment in life! I
have no pain, fatigue or fog to slow me down now. Wow! It all
started in May when my church earnestly prayed for me. Then my husband
enouraged me to try the things I am now using. That was on June 5 and the
rest is history....ha! (See my newsletters from June, July and
August 2007 at www.fms-help.com/newsletters.htm -
there's a "Dom's Update" at the end of each issue.)
It has been
almost 4 months now and my life has changed dramatically. Even my husband
is not nervous anymore that I am going to relapse. He carried such a heavy
load for so many years because I was barely able to function - I was near
collapse most of the time. But my brain is finally getting oxygen now, and I have things that help me combat
stress and give me sustained energy and
stamina. Life is good!!!
Now if only
I could get rid of this (40 year long) sleep disorder www.fms-help.com/insomnia.htm.
However, once your sleep clock breaks (mine broke at age 16), it seems
permanent. I'm thankful to have sleep meds and other things that
help me www.fms-help.com/sleep.htm.
In the past I have gone as long as 5 days without sleep. Many years I
slept just 1-3 hours per night and had to get up and go to work the next
morning. It just tears your body down! Sleep deprivation is actually
a form of torture used in POW camps! Thank God for sleep meds - they are
merciful, but you have to find the right ones for your system. (It's not
like "real" sleep, but I'm grateful for any "knock out"
time!)
In further
complaining, I continue to have a chest tightness and a cough at times - this is
from working in toxic mold in 2005 www.fms-help.com/mold.htm.
Sometimes it almost leaves, but it always comes back. I think I'm just
stuck with it. At least I don't have the debilitating
fatigue, fog, and sensitivity to light and noise anymore. Just the
other day, my husband and I were in Best Buy - a store I always avoided because
of the noise (which was torturous to my delicate nervous system) and the
overwhelming visual distractions. Well, this past weekend, I had no
trouble shopping there! The sights and sounds that used to drive me out of
the store had no effect on me. I was like a normal person!!!
Yay!!!!
For my newsletter
newbies, I just want to mention that my homepage www.fms-help.com has MUCH GREAT
INFORMATION for people with FMS/CFIDS/M.E. - look in the yellow box on the left
for many intriguing and helpful articles! You can also
surf back issues of
my newsletter at www.fms-help.com/newsletters.htm.
Use the search box to find topics of interest related to FMS/CFIDS - meds,
symptoms, supplements, etc. There isn't much we haven't discussed in the
newsletter, but new information becomes available daily, which is what keeps
this newsletter going -- even after 11 years! So stay tuned! One of
the best things about the newsletter is that we are not alone! We have
eachother! I am so deeply grateful to my readers for the great advice and
information they have sent me over the years. The only
people who understand this condition are those of us who have
it. I wish the docs could help us more, but often they aren't
up to speed on this illness. Even those who do "get it" aren't able to
help much, except with meds, which can sometimes have terrible side
effects....been there, done that.
I love hearing from
readers, but would greatly appreciate if you could keep your emails as brief as possible, as I
am overloaded. Also, if you want to ask a question in the
newsletter, please state your question or situation as succinctly as
possible and check spelling and grammar - this will save me editing time.
Thanks so much! If you want responses from other readers, I need your
permission to use your first name and email address. (Remember that
this is an ONLINE newsletter, so anyone can read it once it is launched to the
net.) Anything sent to me without permission to use your name is
always used ANONYMOUSLY, and I take out any personal information, so you are
safe!
Have a blessed
day!
Dominie
Closing
thought--
"Be kinder than necessary, for
everyone you meet is fighting some kind of
battle."
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DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE
DISCLAIMER: I am not a medical doctor. I
am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website
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 website.