DOM'S NEWSLETTER
Jan. 6,
2007
Well, do you like it? I hope
this one is easier to read for those with visual contrast
problems (a sign of neurotoxin illness), mental exhaustion, fibro fog,
migraines, etc. BTW, 80% of the voters
preferred this tan/brown background to the white, to reduce glare.
Several readers mentioned that the red words hurt their eyes, so I changed topic
headings to purple. Please take a moment to scroll down and
check out the PURPLE topics. I know you can't
read everything in my wordy newsletters, but don't miss out on something that
you might be interested in. #18
is why I keep writing this newsletter (for
10 years now) even though I tried quitting twice. I just can't stop
sharing all the extremely interesting info that I receive from you
all. Although I can't answer email personally, I make a valiant attempt to
read what you send me. We are all detectives sharing clues
and trying to find answers to this mysterious illness that doctors
can't help us with...at least not very much at the present time. -
Dominie dombush@bellsouth.net
1. "WHENEVER"
TIME
Got this from a reader
(in response to my having to cut back one day of working at the music
school)--
"We can never seem to do anything at a steady
pace or we get ill."
[FROM
DOMINIE: Isn't that the truth?! Reminds me
of a fibro T-shirt site someone sent me -- one of the sayings is "Whenever
time" with a picture of a clock - meaning that we USED to be able to plan our
work and work our plans, but with this illness, we never know when we will
be functional. I used to play piano and organ for weddings and
funerals, but can't commit anymore. I could never run the risk of possibly
not being able to show up and ruin such an important day in someone's
family life. I'm glad I am still able to teach music
part-time. A brief page about my piano students and teaching is
at www.fms-help.com/students.htm.]
2. LIVING WITH
LYME
Got this from a reader
- see the really interesting links aboutt Lyme on the left side of this
page--
3. DR. SHOEMAKER
AND CHOLESTYRAMINE (CSM)
As you all know,
this is my latest experiment for getting rid of my toxic mold problem (see
www.fms-help.com/mold.htm). I got this email from a
reader--
"I wrote to you last year about
Cholestyramine and Dr Shoemaker. Here is the
info for the pharmacy that
supplies additive free Cholestyramine to those
with chemical sensitivities:
http://planetthrive.com/cgi-bin/members/pub9990212284666.cgi?categoryid=9980212292201This is what I took last year. I was a bit naive and did not know a
lot
about CSM or detox. I took it 4x day as directed which I think was a
good
thing. The directions did say that taking it less than that would
increase
re-circulation of toxins. Eventually I only did it 3x day since it
was
difficult to schedule it in around food and supplements. I took it for 6
weeks and seemed to tolerate it fine, but then the second batch was sent
with a filler I had asked to be removed. I had a series of near-anaphylactic
reactions and stopped the CSM immediately. However, my MCS had been reduced
in that short time, enough to make my life so much more bearable on
a day to
day basis. I am very grateful to CSM. I wanted to resume
taking it again but
I am too scared. I recommend that anyone taking it
should take the additive
free version without the sugar and other harmful
fillers. Also, it is
important to note that you might have a serious
weight loss with it since it
binds to fat. Good luck! -
Julie P.S. Please check out my website PlanetThrive.com, where I
have info on the
Shoemaker Protocol and notes on getting
all the tests he recommends."
4. RACING
THOUGHTS
"In item #8 a
reader says she has racing thoughts and can't sleep. The herb
Passion flower has proven to help the racing thought part.
I have tried it . It works. I would recommend a good brand like Paradise
Herbs', which can be purchased at www.iHerb.com."
[FROM DOMINIE: For me, racing thoughts are helped
by the immune powder I've been using since 2001. I've also heard
that potassium maleate is good for this. See my 100 Tips for Coping with
Fibromyalgia and Insomnia at www.fms-help.com/contents.htm.]
5. SAMENTO FOR LYME
DISEASE
6.
OXYGEN (revisited)
"The
best Oxygen enhancing product is a product called "Oxygen elements
Plus" from Global Health Trax. This is a patented product that uses the water in your
body to make oxygen. Water is H2O. This product takes a small part of the
water and splits it and makes O2 and hydrogen. The Oxygen does all the good
things Oxygen does and the Hydrogen atom acts as free radical scavenger and
helps alkalize the blood and remove acidity and increase energy.
You can read more about it here: www.ghtdirect.com/oeplus_main.aspx?ID=www
I had been distributor for this company
for a couple of years. I still faithfully use this product daily. I
own a Oxymeter and you can measure the oxygen increase after taking 7-10 drops
of this product. You can see the effect within half an hour. A word
of caution: this product is so effective in cleansing the blood by oxygen that
it could lead one into Herxheimer effect initially for a few days. Also,
as Dr. Chaney aptly says in his recent DVD, "You live by oxygen and you die by
Oxygen". This means that even though increased oxygen does wonders over
abundance of it can lead to increased free radicals. Although this product
generates Hydrogen which quenches radicals, a free radical scavenger like
N-Acetyl Cysteine, or cloves would still help. As for the products such as what that this reader
recommends or uses, anything that produces oxygen in the stomach is
practically useless. Oxygen in the stomach is nothing more than
an "expensive burp" as a Ed McCabe world reknowned oxygen
researcher says. Oxygen produced in the stomach does not pass from the stomach
into the blood. To truly increase oxygen, one would either have to generate it
endogenously within the body or take Hyperbaric Therapy, very
expensive choice. A bottle of Oxygen Elements Plus is $29.95 and lasts
about a month. If any one is
interested in learning more about Oxygen, I would recommend the
book "Flood Your Body With Oxygen" by Ed McCabe. It is available at
Amazon: http://www.amazon.com/Flood-Your-Body-Oxygen-McCabe/dp/0962052728/sr=1- 1/qid=1167925047/ref=sr_1_1/103-4177719-4336638?ie=UTF8&s=books
This book goes into all types of oxygen
therapies and their history and effectiveness. It is about 700
pages."
7. METHADONE
FOR FIBRO
From a
reader--
"I'm a 67 yr. old retired wildlife biologist,
part of the FMS/CFS gang & suspected Lyme (although I continually
test negative). I was first dxd in 1987 so am going into 10th
yr. Started on Darvocet & 3 yrs. later had to go to
Vicodin, Soma & Elavil (very low dose) for sleep. 2
weeks ago I called my doctor, whom I might add is one of the greatest blessings
in my life, saying that I still could not take more than 6- 5/500
day of vicodin & still unable to take 2 at once without
severe nausea.
I (quite literally, of course) trust her with my life. I
did not want to try oxycontin which would render me more stupid than the
vicodin! She agreed....opiates are just not for me!
She said (on the phone) she wanted me to try
"methadone"....almost dropped the phone!!! Visions of heroin
addicts shooting up meth ran thru my foggy brain. She told me to
calm down, research the internet & see her on Jan.3.
I am now only 3 days in to taking 5mg. 3xday. I am
tapering the vicodin. Have taken none (zero) today.
My feet are barely tingling; the muscles in my legs,
arms, back & NECK are 80% improved. My mind clearer than it has been
in years. I am ready to reclaim life! Was supposed to take
3 days to notice difference.
I realize that this could change; I have crazy (usually
reverse) reactions to drugs as many of us do; however, for the moment I have
"hope" which is something I had run out of in 2006. I
realize that many fibromites would jump all over this with overwhelming
disapproval (had the same prejudice myself) but I am amazed at the
difference. I am alert! Amazing! I have been thru the
Dr. Murphree routine for yrs.; various other non-opiate pain management etc.
etc. End up back to square one...it doesn't work!
I don't know if I want you to share this info due to the
stigma attached to methadone; but at 67 yrs. old I am simply
not worried about addiction; heck already am addicted to opiates.
I'm tired of the whole thing and if I can feel well enough to pick up my
life again & kiss the zombie me goodbye that works for me.
There is an interesting site
www.methadoneanonymous.com that I
found thru Yahoo.
Met the founder online; a lovely note from the
founder with the same problem and who found the solution. Anyone
interested can check it out. There is a wide spectrum of info good &
bad on the site, but very interesting as to how methadone works. Interestingly
enough,
you don't get high on this drug. So if one is
looking for that...not gonna happen! Sorry this is long....3 days in
I am so excited & was dragging my feet on this.
So far so
good! Dr. called me today & was very pleased. Me
too!"
From another reader in response to
using methodone--
"Yes and wait until she becomes addicted
and needs more. I do not believe in all the hard drugs for pain. They do
work for a while then you
become dependent on them. I wish her
lots of luck, but been there done that and it is not for me."
[FROM
DOMINIE: This reader had to wean herself off morphine which she had been
using for pain from a car accident which caused her
FMS/CFIDS.]
8.
CHOLESTYRAMINE FOR DIARRHEA
From a
reader--
"I just read your most recent newsletter www.fms-help.com/010107.htm and was surprised to see
the word "Cholestyramine" in one of the headlines. It was being
used in conjunction with mold problems. I want to tell
you that I had about 12 weeks of the most horrible
diarrhea during the spring of 2004. It was so
severe and attacked me so suddenly without any warning signs -
much of the time I couldn't make the 12 steps from sitting on my bed to my
bathroom. I had to wear Depends and was too afraid to leave the
house. My doctor prescribed everything he could think of (about 5
different medications) and nothing worked. I also had to change pain
medication as the pills we going right through me. Then one day he called
and said "I think I have one more medication for you to try". It is
the Cholestryamine for Oral Suspension, USP Powder.
Wow! and Double WOW! It worked almost from the first
dose. One scoop taken in a few
ounces of water, must take other medications either one hour before or four to
six hours after taking it. I keep it on hand and take it with me when we
travel, although I have not had a recurrence of the diarrhea. I felt
absolutely NO SIDE EFFECTS when taking one scoop as
directed. Thought your "Team" members who suffer bouts of
diarrhea with their IBS might be interested in
this."
9.
LOW DOSE NALTREXONE (revisited)
"My Doc prescibed the
LDN for me last year. I have had CFS for almost 4 years now. I found that it did
NOT help me at all. She said that it was good for raising NK cells. It
kept me awake at night, even at small dosages and I stayed on it for
about 2 months and felt even sicker than before. It may work
for you, though. I, too, was very optimistic when she first told me about it and
I read all of the web sites on LDN and CFS/FM. So if you feel comfortable with
it, go ahead and give it a try. Just start at a very low dose so it doesn't keep
you awake. And it has to be taken at night to be
effective."
10. PONDERING WITH THE "WHY'S"
From a reader--
"Thank you for your continued encouragement.
I'm a Christian myself but being human, I still struggle with the "whys"
of things. In retrospect, I am glad that he gave me FMS to show how
horrible I was treating myself and my body. I've learned so much these
past 6 years and I plan to continue to learn more and I'm so grateful for that
experience. There's good and bad in everything I guess. I trust that
what is happening is of God's will and that things will happen when they are
meant to....or not meant to for that matter. He helped me find you and
it's been a continued blessing to learn from you and our many
other "friends" out there that continue to hope for the best for everyone
on our "team." This is one of my favorite verses when I have a bad
fibro day, along with the infamous Philippians 4:13 "I can do all things through
Christ who strengthens me," and II Corinthians 12:10, "Therefore, I will boast all
the more gladly about my weaknesses, so that Christ's power may rest on me. That
is why, for Christ sake, I delight in weaknesses, in insults, in hardships, in
persecutions, in difficulties. For when I am weak, then I am
strong."
11. FIND
FIBRO INFO FAST
Use the search feature on
my homepage at www.fms-help.com - the Google search box is on the right toward the
bottom, under my name. It will search my site and all past newsletters for
whatever topic you are seeking. Handy
technology!
12. NAET
ALLERGY ELIMINATION
From a
reader--
"Have you heard of NAET (Nambudripad's Allergy
Elimination Techniques)...I have tried it, and I believe it works. Not very
expensive either. Go to their website www.naet.com to find out
more."
13. SIGN UP
FOR THIS!
I got this info from
Brett Hodges, formerly owner of RemedyFind. He is now with
RevolutionHealth.com. If you register, it has many benefits such as
rating your doctors (YESSSSS!!!), seeing what other people say about
him/her, checking out meds, and even storing your personal health info all in
one place. To register, go to www.revolutionhealth.com/preview?code=uQgwZp8CMj.
If you were with RemedyFind, be sure to use the email
address and member name you had at RemedyFind, so they can identify you and
move over your RemedyFind profile and treatment ratings. Once
registered, you can use the features at www.RevolutionHealth.com.
14. FIND HEALTH ANSWERS
QUICKLY
15. GENE
MUTATIONS & COGNITIVE PROBLEMS
From a
reader--
"I have had CFS/Fibro symptoms with swollen glands, etc for
about 5 years now. My doctor does a lot of testing. I don't understand exactly
what the latest test results mean that my doctor did or why it would surface
now. Recently my doctor did a test for C677T gene
mutation. This gene mutation causes an inability to metabolize
folic acid so folic acid taken into the body is not utilized which
causes other vitamins ect to not be absorbed so everything gets out of wack and
there are significant effects on the brain. It is treatable with a prescription
called leuvocalcium or something like that. I am not sure how/why this mutation
would not bother me as a kid but on the net if I put C677T into my search engine
AND fatigue I get thousands of hits so it might be yet another test to ask for
to see if this is a problem for you. The prescription is expensive and although
it did not solve all of my problems ( I might not have been on it long
enough for complete reversal of symptoms, I recently lost the
prescription due to a change in insurance that won't pay for it, and now I have
a big increase in cognitive problems and
dizziness that is increasing."
16. POSITIVE IONS
DISPELLED BY SALT LAMPS
"The structure of the Salt Crystal contains surplus of
negative ions, which act as “dust collectors”. Once released
they attach themselves to positively charged air carrying dust, pollen,
mold, dander, cigarette smoke or odors; and “disarm” them, causing
carried particles to fall to the ground. This very powerful purification
process, invisible to your eyes is even capable of killing bacteria."
17. KEEPING MOLD
OUT OF THE HOUSE
Reply from a reader about my
aquarium--
"Yes in the sense that aquariums have a air pump that is
continuously pumping air in the tank and the outgoing air would have some of the
mold spores in the tank in it. And "No" in the sense that "air dilution"
in your residence or the room that the aquarium is in has a lot to do
with how you are affected. The larger the room, the more the air is exchanged
with other rooms and outside and such the less the effect from the
aquarium. Frankly, I think there
are a lot more sources of mold in a house than an aquarium, though that could be
one too. Are your A/C ducts in the floor or in the
attic.? A/C ducts and system are the most notorious source
of mold, specially if they are in the floor (under the floor in the
ground). have you had an air analysis of your
house. You can send for a kit (for about $40-60) that would instruct you
how to do a air test sample and send it to a lab and they will send you a report
of what is in the air. Also, for about $150 you can have a certified company
come and do a test of your air for you. Their report will show the
amount of dust, mold and other contaminants in the air. Also, if you can afford
it , I would suggest installation of Ultraviolet or similar sanitizers
in main AC plenum area. I can tell you more about it if you would like
to I hope
this was somewhat
helpful."
18. NO MORE "LONE
RANGER"
From a
reader--
"I just
want to start by thanking you for your wonderful website www.fms-help.com. It has been very
informative, and I don't feel like the Lone Ranger
anymore!! :) Through all this frustration your
website has shed light on a lot of questions I have, and will
definitely have as I search for answers!!"
[FROM DOMINIE: This
email nearly brought tears to my eyes! During the early 1980's when I
was first diagnosed with "fibrositis," there was no internet and the
doctors knew next to nothing (still do) about this mysterious
illness. I remember searching despondently for information about this
strange thing that had destroyed my life. I found a few short
paragraphs in the Merck manual in the dusty stacks of the public library.
It basically said that doctors should prescribe muscle relaxants and
anti-depressants and that a sleep disorder was involved. What a luxury it
would have been back then to have had a support group, or just ANYONE who
understood what I was going through! I had to quit my job (financially
disastrous) and was being mocked and ridiculed by my (then) husband who
called me unproductive, a mental case and a hypochondriac. But I
digress here....(shudder)....Fast forward to 2007. God kept me from
suicide www.fms-help.com/suicide.htm
several times in my darkest hours and showed me ways to cope, as well as giving
me a way to help others. Here are my personal stories (for those who
want the gory details): fibromyalgia
www.fms-help.com/fibro.htm; chronic fatigue syndrome
www.fms-help.com/fatigue.htm, insomnia www.fms-help.com/insomnia.htm.]
100 Tips for Coping with Fibromyalgia &
Insomnia
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE