DOM'S
FMS/CFIDS NEWSLETTER
January
13, 2009
HAPPY NEW
YEAR!
Below are 20 topics in PURPLE. Don't miss the RED TOPICS! Readers
comments are in BLACK. My comments are in
TEAL.
1.
READERS WRITE
"I just found your website www.fms-help.com and
newsletters. I have been reading for the last 3 hours.
It is so helpful. I have FM and
CFS."
"Your newsletter is such a blessing
I've learned a lot (sometimes I think more than from my
doctors)."
"I have recently been told I have
Fibromyalgia. I now am scared because I cannot understand this
illness. I am so cold at times and hot at other times. I am extremely
weak. I cannot sleep but a couple of hours if any at a
time."
"I have not been officially
diagnosed with FMS but the doctors have not been able to find out what is wrong
with me. From what I read on fibromyalgia, I feel like I am
reading about myself."
"Thank you for your
invaluable information, very precious indeed!"
"I ran across your site
www.fms-help.com while
searching the web
for Alternative Solutions for Fatigue in Fibromyalgia
Patients. After viewing so many sites of....
well frankly... lesser quality, I was pleased to land on
your front door!"
"Thank you so much for your
newsletters. You are supporting so many people round the world with your
understanding and empathy of this "life taking"
condition."
"It's nice to read about, or at
least feel connected to someone, that has identical symptoms
that I am currently experiencing now. I might not be able to have the
energy to get out of the house soon. I have a child who needs
me."
2. AN
INSOMNIAC'S STORY
From a reader--
"I never had sleep problems before
in my life. I had a baby almost five months ago. Ever since I came home from the
hospital, I would awake many times during the night. (I went to the restroom
when I woke up so I thought my bladder just hadnt gone back to normal yet or I
had a bladder infection.) I could always fall right back to sleep though. One
night I actually got a good 8 hours only waking up once and felt LETHARGIC the
next day. I couldn't understand why. Then recently, my baby started waking up
every two hours or so during the night. Or I would get woken up by the dog right
outside our house barking 10 times at 2 in the morning. I could still pretty
easily fall back to sleep though but it started to become harder. During this
time, I was very tired so I went to take a nap during the day- but COULDNT! I
lost the ability to nap. Then one night I slept at someone else's house when I
had a sore throat to catch up on lost sleep and didn't sleep the whole night. I
would feel like I was starting to fall asleep and would feel the need to go to
the bathroom. Once I got back in my house, this didn't happen again. It did
start to take longer to fall asleep at night- like an hour or more. I started to
have throat symptoms again so I slept away from home to catch up on sleep.
Didn't sleep all night. Came home and slept only an hour and a half broken up.
The next night I had total insomnia for two or three nights, 4 nights- didn't
sleep at all. (This was two weeks ago) Since then I've been trying melatonin
(helps me get 20 minute sleep increments a couple of times)- my mom tells me-
and I remember my dreams so I guess I slept."
3.
CONGESTED BRAIN
From a reader--
"Please research the info. on using
both Glutamine = Glutamate = congested brain. A newer title
from Donald Scott and son on topic of ALS, states the
function of these chemical amino acids sets of other problems that are life
threatening to FM/CFS/M.E. victims. Also, same small book tells how vitamin D
should NOT be supplemented due to causing other problems, I have just over the
last year upped my intake of all these and yes am doing much worse. After
finishing most of this authors materials found it all so devastating
beyond anything ever to pass my eyes. May God have mercy on us and all the other
victims as this goes on."
4. MRSA
& FIBRO
From a reader--
"For some unreason I got MRSA on my
knee in April....No idea how I got it or why......but I was able to take the
meds they gave me. Does anyone know if getting weird
infections like MRSA is normal for people with FIBRO? This is
the first time I had problems with weird infections in my body.....Does anyone
have any input on this?"
From Dom: People
with fibromyalgia have compromised immune systems. Battling viruses,
bacteria, and fungi is common. There's a host of things I must
use to keep myself above the line of infection. See my list at www.fms-help.com/what.htm.
5. FIBRO
FLARE DISAPPEARING THROUGH DIET
From a reader--
"I went through a
nightmare of a flare up for several months and wondered if I
was going to stay that way the rest of my life. It was VERY discouraging and
depressing! Even in my depression, I continued to do a modified version of
Callenetics every morning as my exercise program (I have done this faithfully
for over a decade) and continued to stay away from soft drinks (I have also
avoided these for over a decade). In spite of these things, I continued to
experience a very rough time and was beyond desperate for help. My doctor
recommended starting me on Lyrica, but I had a “check” in my heart about it and
told him I wasn’t ready to “go there” yet – I would pray about it. I tried
Valerian root and Melatonin, with limited results. I pored over
every newsletter you wrote and through those was inspired to do some more
research of my own. Because of some information on your site, about 4 months
ago, I started eliminating refined sugar and caffeine from my
diet to hopefully help with sleep. I also started to
avoid all white flour and milk. It was not an instant
fix, but by the 2nd month, I was amazed at the change in my
sleep patterns, mood, muscle cramps and restless legs.
The weird hand/brain disconnect and foggy thinking cleared up. The
strange feeling of inflamed nerves eased up. So many symptoms
have pulled back into a very manageable stage. My mom sent me vitamin D
supplements, Super B Complex and Natural Vitality’s CALM (magnesium supplement
to drink). I believe these are also adding to the diet benefits.
Since I live in Papua New
Guinea I can’t get nutritional supplies in the
country, but the Good Lord heard my cries and provided for me. I also live
in an area that hardly grows any vegetables. Again, the Lord answered my
prayers and a friend from the Highlands of PNG now goes to the open market and
buys loads of veggies for me as a standing order to come up on any mission
flight headed this way. I feel so cared for by our Lord. With His
provision, I eat very healthy – lots of fruits and vegetables, fish (local) and
chicken (local). Things are looking up!"
From Dom: Read my 100 Tips for Coping with Fibromyalgia and
Insomnia at www.fms-help.com/tips.htm.
6.
LIGHTNING PROCESS
Comments from a
reader--
"First let me say I have NOT
tried the Lightning process www.fms-help.com/122208.htm yet,
but know from the website that it includes techniques from Neurolinguistic
Programming, Hypnosis, and Osteopathy. I am a hypnotherapist and NLP
Master Practitioner - and I find the idea of marrying these techniques with
knowledge of Osteopathy to be very intriguing. I'll be taking his training
next year. To dispel some of the fear based opinions regarding hypnosis,
NLP, et. Al., let me say that none of these techniques are 'simply' mind over
matter, but they are NOT mind control, either. They use what we
know about HOW the mind works, HOW the mind affects the body at a neurological
and systemic level, to re-program the mind/body connection. For
many people, this can heal MANY problems. It is not a cure for all people
all of the time, but it is a definite cure for some people some of the
time."
7.
NEPRINOL FOR FIBRIN
From a reader--
" NEPRINOL®
AFD (Advanced Fibrin
Defense)*
http://www.arthurandrew.com/neprinol
http://www.biomediclabs.com/fibromyalgia
Fibrin is a
substance naturally formed in the human body that plays a significant role in
our health and general well being. Fibrin is responsible for
scar tissue, thrombus formation and inflammation with its associated
pain. Neprinol®-AFD by Arthur Andrew Medical contains a
blend of systemic enzymes that specifically address fibrin levels in the
body. Natural removal of fibrin by the body is accomplished
by enzymes (principally plasmin) whose role is to attack excess fibrin
buildup. Neprinol®-AFD provides superior fibrin-active
enzymes in a combination designed to address fibrin buildup and much
more.
NEPRINOL® is radically more advanced
than today's leading systemic enzyme blends. NEPRINOL®'s formulation is more
complete and essential than a daily vitamin, and with it you can supplement the
enzymes that Mother Nature takes away from us as we age. NEPRINOL® contains
several sources of anti-oxidant rich ingredients, as well as a full
spectrum of proteolytic (protein digesting) enzymes, enterically coated to adapt
to a wide spectrum of pH levels. NEPRINOL®'s exclusive formulation contains
several highly concentrated digestive enzymes that assist the body in its
ordinary digestion of fats, proteins, sugars, and carbohydrates.
These digestive enzymes also work in the blood removing waste material
and converting undigested food particles into energy.
Anti Inflammatory Enzymes
Our
body produces certain chemicals called Prostaglandins in response to injury. A
certain type of prostaglandin causes inflammation, leading to redness,
swelling, constriction of blood vessels and decreased tissue permeability.
Anti-inflammatory enzymes like Serratiopeptidase, Bromelain and other
proteolytic enzymes help by breaking down these proteins in the injured tissue
thereby facilitating the rapid removal of cell debris. It works
synergistically with the natural repair mechanism of our body. Unlike aspirin
and some anti-inflammatory drugs, enzymes do not inhibit the production of
prostaglandins and thus reduce swelling and pain without interfering in the
natural process of healing.
Enzymatic Detoxification
NEPRINOL®AFD is the most
potent systemic enzyme blend available. These enzymes use a lock and key
mechanism to emulsify and release dead, dying and toxic materials from the
body. When this process takes place the only way to cleanse the body
is to release this debris back into the bloodstream so that it may be processed
by the liver and kidneys and then finally released through urination or a bowel
movement. We refer to this process as Enzymatic Detoxification,
which can sometimes be uncomfortable. Symptoms such as headache, fatigue, upset
stomach and diarrhea may occur. If at any point you may start to
feel ill you may be detoxifying too quickly. Decreasing your usage
for a more gradual and comfortable detoxification period is therefore
recommended. It may take several days to completely cleanse the body of
unwanted debris. We recommend drinking plenty of water during detoxification to
allow the body to dilute the toxins that are being expelled. Please call
us anytime if you begin to feel ill.
Enzymatic Detoxification is only
temporary and in some of the most extreme cases will not last for more than a
period of 14 days
8.
BENZODIAZIPINES
From a reader (male)--
"About Klonopin - I was given a
similar compound and it almost killed me, turns out that I don't metabolize
anything in the benzodiazipine group and it builds up in my body to lethal
proportions in a matter of days. Anybody about to try this stuff, needs to
check carefully with their pharmacist before and during use until they're sure
its safe. I only took the stuff 3 days and it was nearly a month before I began
to feel normal again."
9.
CAUSES OF CFS - PER THE CDC
Causes of Chronic Fatigue Syndrome,
per The Centers for Disease Control (U.S. Dept. of Health and Human
Services)
From Dom:
Summary-- the cause remains unknown, but include possible infectious agents,
stress, toxins, immunology, hypothalmic-pituitary (HPA) axis, neurally
mediated hypotension, and nutritional deficiency.
10. LYME
/ BABESIA
From a reader--
"When I was fighting Lyme Disease,
the doctor said I had a co-infection called babesia and he referred to it as a
cousin to malaria. I was taking antibiotics for it so for sure it's not a
virus. The good news is that I think I'm free of Lyme Disease and
Babesia. I'm so much better. Now all I have to contend with is
Rheumatoid and Osteo arthritis, Fibro and Osteoporisis. I've had both
knees replaced and one hip. My left hand is bent double. My fingers
are down to the palm of my hand so this year I've got to do something about
that. But believe me nothing is as bad as the Lyme Disease
w/babesia. My doctor says that 60% of those with fibro has Lyme
Disease. I can't encourage you enough to suggest to all to be
tested for Lymes and for everyone to remember the test is only as good
as the doctor. My Lyme doctor sent the results of the Lyme to my
Rheumatolgist and he insisted I didn't have Lymes. But I stuck with Lyme
doctor and I'm so glad I did. My test for the babesia came back negative
but my doctor said that had happen to several of his patients that had the same
symptoms as me and he encouraged me to continue with the meds. The meds
were so expensive and I'm still trying to get my credit cards paid off but they
work. One was $1,000 a month. Something else I've wanted to tell you
about. I had been on the meds for quite a while and I didn't seem to be
getting any better. I was ready to stop when I was searching the
internet for any thing I could find and came across a support group chat
room for people with Lyme Disease and the subject was babesia and the
medication I was on. Everyone agreed that the medication didn't help them
at all till they reached a certain month and then they all noticed an
improvement in thier condition. I always considered that a God
thing. I looked for that chat room over and over again and never could
find it. But because those people were sharing that info I am well from
Lyme w/babesia. I was doubting my doctor but when I heard from people that
were going through what I was then it was believable."
11.
KIDNEY DISEASE OR CFIDS?
From a reader--
"I was reading through this [U.S.
Dept. of Health and Human Services Centers for Disease Control (CDC) - Causes of
CFS http://www.cdc.gov/cfs/cfscauses.htm] and a light came on in me. If you look up the kidney disease I
was just diagnosed with you'll know why. Fibrillary GN. And, they can't
figure out why I have it since I have never had Hep. C, Lupus or any of the
other ai's that generally cause someone to get it. I had hematura for a very
long time and after running several tests they finally decided to do a kidney
biopsy. If they had'n't they never would have found it."
12.
MYOFASCIAL PAIN SYNDROME (MPS)
From a reader--
"I suffer mostly from a
tight squeezing feeling in the back, shoulders and chest. I remember explaining
that some people suffer more with the MPS symptoms than the fibro symptoms and
some people vice-versa. MPS has trigger points and fibro has tender
points. I have
some interesting information that could help with MPS and perhaps Fibro pain. It
might not be new to you but then again it could be. So here’s the links:
http://www.somaticliving.com/page1.htm
http://www.somatics.com/
The first link is to a
UK based website which I read last
night and I am waiting for a response from them. If I can afford a consultation
then I will go and let you know the outcome."
13. WHAT CAUSES CHRONIC FATIGUE SYNDROME
(CFS)?
14.
C-REACTIVE PROTEIN (CRP)
Inflammation from Chronic Fatigue
Syndrome May Increase Risk of Other Illnesses
15.
"QUEEN OF THE DARK CHAMBER"
From Dom: This
intriguing book title came to my mind last week. My mother mentioned it to
me decades ago - about a woman who could not tolerate light or
noise. She was bedridden in a dark room for over 50 years, yet
was very courageous and inspired many. Her medical condition
intrigued me, because it sounded like what people with severe CFIDS
experience. This lady was born in China in the 1890's, and came to
the U.S. during the war. I wrote to
a friend who works for Chinese Christian Mission to ask if she knew anything
about this book - here's what she said--
"Yes, we know Christiana Tsai and have visited
her when she was in Paradise, PA in the late '60s. We not only know her, CCM's
1st movie was on her in the '60s too. Sorry the movie is no longer available,
techonology has changed so much. When we visited her, she was weak
on her bed in her dark chamber, but would sit up to talk to us and tell
stories to our 2 sons who were under 10 years old then. She sounded weak at the
beginning, but as she went on and on, her voice grew stronger and stronger.
Christiana had an amazing testimony. Surely I would recommend for you
to read about her and be blessed by her courage."
Reader
1--
"Malaria is caused by a type of
mosquito. There are different types of malaria, and if she had
cerebral malaria, it can damage the brain and it can then have
long lasting symptoms. Many cases of malaria are fatal, and it is one of
the highest causes of death in Africa. Some of the symptoms are similar to
flu, and it can be misdiagnosed as flu (some flu symptoms are similar to fibro),
but you can have an extremely high temp, which will also cause damage to brain
receptors. I am also porphyric, which also has the symptoms - when you
have an attack - of not being able to tolerate light and noise and you have
severe abdominal and liver pain and hallucinate.. This can also have a
long lasting damage to brain receptors, actually, you can become psychotic and
spend the rest of your life in an insitution. Porphyria is a biochemical
blood disease. There is a different form of it in America, where is mostly
has an effect on the skin. There are lists and lists of meds you are not
allowed with phorphyria eg. 1 aspirin can put you in hospital, no sulphur drugs,
no barbituarates, very few antibiotics, not supposed to have sleeping meds, have
problems with anaesthetics - my heart has stopped twice while under anaesthetic,
and all in all, it just makes life and taking meds very complicated. Half
of the things other people recommend for fibro, I can't take. Well the,
short of it is, that there are many other diseases eg menengitis,
enchaphilitis (cant think how to spell it) which also cause you to have a
reaction to light and noise - including alzheimers!!!!! Maybe fibro and
alzheimers are related!!! I know of I am having a bad memory day, I call
it alzheimers lite - I have had a stroke as well, so all of the above really
makes for me not having many brain cells left. Until last year, I used to
write for our local newspaper, but am making so many errors with typing, ones
spell check does not pick up eg. "full", instead of "fool" - than I no longer
can write for the paper."
Reader
2--
"I am holding this book in my hand right now as I read
your email. I did not read through the entire book yet but now I will. I
recall back in 1970s, we had a retreat in PA and [several ladies] went to visit
her. She is an inspiration despite her mysterious
illness."
16. CAR
ACCIDENTS & FMS
From a reader--
"I've had FMS for over 15
yrs. In October I was in a bad car accident. While I had no
broken bones or anything, the FMS took a major hit. I've just returned to
work yesterday. I'm on half days right now. I'm experiencing
severe fatigue, my head is very foggy and I can't think clearly. Also
recently I discovered that my reflexes in my legs are gone. I've also
noticed my legs have been feeling very tired and sore and heavy lately. Do
you think this is all FMS related or could I have something else going
on?"
From
Dom-- I'm not a doc, but it sure sounds like a fibro flare to
me. A lot of people develop FMS from car accidents, and if they already
have fibro, an accident can cause severe flare-ups of symptoms. The
accident may have impacted this reader's brain and nervous system, which is
basically what's wrong with those of us with FMS/CFIDS. See 50 signs
of fibromyalgia at www.fms-help.com/signs.htm. A list of things that help me is at www.fms-help.com/what.htm. I have 100 tips for coping at www.fms-help.com/tips.htm. Hopefully with time and reduced stress, this reader's
symptoms will improve. This illness is so baffling for both doctors and
patients.
17.
BRAIN WORMS - WASH YOUR HANDS!
From a reader--
18.
COFFEA 30 FOR SLEEP & PAIN
From a reader--
"I just read this interesting answer
to the question below. And it became clear to me why Fibromites have Brain
Fog. We don't get enough restful sleep because of our pain. We are
sleep deprived so we have Fibro Fog. So the cure for this is to get
restful sleep. Taking Coffea 30 has helped achieve restful sleep without
any side effects and I've also cured my Fibro pain as much as 80%. My
flare ups are fewer and farther apart and not nearly as severe. My
anti-inflammatory diet has also been a great help. The answer to the pain
is in Sleep and a healthy diet. When you can break the pain cycle, healing
can begin to take place."
Q. What are the effects of sleep
deprivation?
A. If you don't allot enough time for sleep, you
become sleep
deprived. Besides being sleepy during the daytime,
sleep-deprived
people often have problems with their thinking. They are
slower to
learn new things, they may have problems with memory, and their
ability to make judgments may be faulty, enough so that they may think
they are really starting to "lose it" when the problem is really not
enough sleep.
From
Dom: Sleep deprivation is a form of torture in POW camps! My doc
finally got me on meds that help me get a combined total of 8 hours of
sleep per night - heavenly! My list of meds is at www.fms-help.com/what.htm. Without sleep, the body can't heal and various systems start to
malfunction or even shut down.
19. HOT FLASHES
From a reader--
"I was diagnosed with fibro approx.
10 years ago and recently had a pretty bad flare-up. I noticed that you
have or had been having trouble with hotflashes. Due to endometriosis
surgery also about 10 years ago I am going through a somewhat early menopause
& have found that after taking the Indian herb ashwagandha my hot flashes
have completely gone away. They actually went away after the first day of
taking it! Just thought it may be helpful."
20.
DOM'S UPDATE
Whew! Just been through a very busy Christmas/New
Year season with my students, church musician work, out of town company,
etc. Amazingly, we had the best Christmas at our house in 10 years for
these reasons--I was not sick in December (miracle), there were no major
family issues going on, a cousin from up north whom I had not seen in 22 years
came to visit, my 87 year old mother is doing well, and we had beautiful
services at church for Christmas and New Years and much uplifting music.
Well, it doesn't get much better than this! Having had Christmases
for many years that were the opposite of all I just described, I was deeply
grateful for this season and actually enjoyed it all! Thanks to God and to
all of you who prayed for me. I am cherishing each memory. I pray
that 2009 will be a year of improved health for all of us! A list of
things I use to stay functional is at www.fms-help.com/what.htm.
Your fibro
friend,
Dominie
Bush
==================================================
II
Corinthians 1: 4 - "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.
Return to Dominie's FMS/CFIDS Home Page
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.
