DOMINIE'S
NEWSLETTER
Jan. 1,
2007
Happy New
Year to my Fibro Team!
This is how one
reader referred to us and I loved it! You guys ARE my "team," and I
appreciate you all so much! As we enter 2007, let's hang in there together
and keep learning ways to deal with (or even cure?!) our neurotoxin
illnesses. Take a quick scroll down to check out the topics
below in RED - some may be helpful for your
own situation! - Dominie
1. LOW DOSE NALTREXONE
(revisited)
"I took low dose naltrexone about three
years ago. I have had very
severe CFS for a long time. I met with
Dr Bihari and I also know the
other doctor who has
been a part of promoting this for CFS. I talked
with one woman who
said it put her symptoms into total remission. I
was so excited and
hopeful. Total remission? What a dream that would be!
For me, when I took
it, I took a lower dose than usual. I had
the
most severe reaction, slurred speech, could not move, felt
more
drugged than I ever had in my life, totally unable to get out of
bed
or speak. It was awful. My husband actually had to put
this bell by
the bed so I could call him when I needed something,
because I
couldn't even call out! I felt like I was vomiting but
it would come
up and then not come out.
In spite of my initial
severe reaction, I lowered the dose, skipped a
night and started
again, kept trying it over the course of a few
weeks and lowering the
dose down to the point where they said it
could not be giving me side
effects- but it DID give me awful side
effects. The doctor who pushes
it, Dr Bihari, said it was and is the
best treatment out there for
CFS. I don't buy that at all. Not at all.
So I kept trying, and never
felt good on it. Then one day suddenly I
felt my old self again, I had
energy and could hold normal
conversations, and I remember feeling
just like I did in high school,
normal!!! I was so excited. The only
thing was I gained weight alot
in my face and that was from the drug,
and I also was very short of
breath, uncomfortably so.
The good day lasted one day- maybe two- then I slid down
again and
the side effects just got really bad. I kept a diary of my
symptoms
and feelings on it. It's an intense drug.
If you try
it, start much lower than suggested if you are sensitive
to medicines
like I am. It did help one woman I know! We are all so
different and
have different things."
[FROM DOMINIE: Now that's the
truth!!! One person's miracle drug is another person's worse
nightmare. FMS/CFIDS is such a complicated monster to fight and it seems
to keep mutating and is not the same for each person. And we wonder why
doctors are confused about us?!]
From Reader #2 (a nurse)--
"It is used to treat autistic children who are
self-abusers. It causes decreased sensations of pain or
pleasure. As it binds to the opiate receptors in the brain, it
diminishes the sensations, be they pain or pleasurable. As I said, this is
an off label use for this medication."
From Reader #3 (whose sister tried
LDN)--
"I am responding to your request for
information on Naltrexone. My sister and my family are both strongly
against the use of Naltrexone, Suboxone, etc.. In October, a pain
management physician thought my sister needed to get off of Dilaudid for her
pain, which we all agreed was too strong of a drug for her to be on. She
was weaning herself off of this drug on her own. The physician talked up
his program of Suboxone and Naltrexone for pain. He put her through a
detox program to get her off Dilaudid (which she took exactly how prescribed by
her physician, never anymore, sometimes she took less). This put her
through a spiraling nightmare!!!!!! The drug made her feel
that she was out of her mind, had creepy crawly all over her, but it did help
the pain. She felt totally out of control! I do not
recommend this drug for anyone, unless you are (and need) to go through detox
and are addicted to alcohol or drugs. She was not an addict and had only
been on Dilaudid for four months, taking it as prescribed by her
physician. She is now going through a program
with a physician in California to reverse the symptoms of
Fibromyalgia. His name is Dr. R. Paul St. Amand in Marina del Rey,
California
(310) 577-7510. He has written a book about his study and his protocol it
is called "What Your Doctor May Not Tell You About Fibromyalgia. We found
this information from a friend of a friend who went through his program and is
feeling like a normal human being and can live a normal, productive life!
My sister started the program on 12/26/06, prior to that she was in debilitating
pain and was not able to function or live a normal, functional life. She
was put on disability around the year 2000."
2. CHOLESTYRAMINE (QUESTRAN)
- revisited
Feedback from a reader about my new experiment with
cholestyramine for my mold-induced respiratory illness--
Dominie—Be very careful with this! First of all, the
Questran has lots of sugar in it, unless it is the no-sugar
version. Start VERY low dose. My daughter used this for a short
period of time. She was never able to get up to the “normal” dose because the
toxins were released in such a way that she could not get them out of
her system fast enough. She suffered a crash that I’m not sure she has
ever recovered from, since she was doing so well at that point we were trying to
get rid of the residual toxins in her body.
She became re-poisoned! I am not saying don’t take it, but I think doctors are
very “blithe” about recommending--but they don’t have to deal with the reactions
in their own bodies and you do! Elissa has since found that ANYTHING she does to
release toxins causes problems. Before she starts anything, she must be sure her
bowel elimination is 2-3 times daily. Then she has to be able to drink enormous
amounts of water and urinates every 30 mins to hour. Plus she does an enema
every day or every other day to help get the toxins out quickly. Sometimes this
is not enough, and the body is just engulfed by what is released. I noted when
we explored the use of Questran that the doctor recommended taking some other
medicine beforehand for the Herx effect—can’t remember what. We didn’t do
that.
A word on the diagnosis—I think the trigger for your Fibro was mold. Then in
order to compensate/adapt for the toxin, your body may have started into the
cascade of changes that causes Fibro. Yes, getting rid of the toxic effects of
mold will help, and may make you more functional, but I think to be “cured” your
body has to go back through the changes it made in order to get back to
“normal”. A long process. I think the cure is coming in the form of
something that will help the genes return to normal, but we’re not there
yet.
I think my daughter’s CFS was triggered by mold and has been re-triggered three
times by mold exposure. She is undergoing treatments now that have made her very
sick, but now seem to be helping. These are homeopathic, herbal, and traditional
meds prescribed and administered by a D.O. who is in practice near us. Very
expensive, as all the doctors who are working with success on Fibro and Fatigue
seem to be charging $360 an hour or portion thereof. As the toxins have
been released, her skin has developed all sorts of sores and cysts and eczema.
The toxins are having to use the skin as a way out because she can’t get them
out fast enough through kidneys and bowel.
This doctor says she has Lyme also, and is doing an
herbal treatment for that. I think everyone who has CFS or Fibro has more than
one bacterial and viral problem because the immune system is the first thing to
go haywire as a result of trying to deal with whatever toxin or trauma initiates
the illness.
I have read some simple things that you can try on the mold in
respiratory passages. Using a nasal spray made with Nystatin
powder. They gave her PleoNig, another homeopathic, but a doctor has to
order that. It cost about $40 and she used it for a month. May have to do it in
cycles.
3. VISUAL TEST TO DETERMINE IF YOU HAVE A NEUROTOXIC
ILLNESS
From a reader--
"Dr Shoemaker...he has a website, you can do an
inexpensive visual test to see if you have a problem with neurotoxins...
www.chronicneurotoxins.com It
correlates with chronic Lyme disease."
[FROM DOMINIE: I tested
positive in May of 2006 after working in toxic mold for a
year.]
4. ALLERGY SHOTS WERE
THE ANSWER
From a reader who had to quit working in a mold-filled
environment--
"Last year I worked at a [school] that was filled
with mold. For ten months I suffered to the point that I was taken to
the emergency room by my husband because I was convinced that I had a serious
lung illness. My lungs were clear but I was out from work for almost 3 weeks. I
went to my board and begged for them to clean up the mold. I found black mold
under the kitchen sink, on my ceiling in my office, under tiles in classrrooms
and growing all over the walls. My recovery was slow. I also visited a
nutritionist and started on a good liquid vitamin that included some herbs and
minerals that I was not taking prior to this. It was a long time until I felt
like myself. I continued taking massages, visiting the chiropractor every few
months, exercised slowly until I built myself up again. The most important
thing I did was to leave my job. For the first time in my life, I actually
walked out of a job with no notice. I knew if I didn''t I would end up back
in the hospital Once I left the mold environment, I began to feel a little
better. I made sure i went to bed early and kept stress to a minimum. I now work
in a brand new [facility]. I am on no inhalers and no antihistimines.
The allergy shots have worked wonders for me and my fibro is just about
non existent. The only time I have flare ups is when the weather
changes. In [Florida], it can be hot in the morning and temperatures can drop
dramatically. This usually triggers some fibro, but with patience, yoga.
meditation and exercise I can usually get it back in order very
quickly."
[FROM DOMINIE: I'd love to go
back on allergy shots, but without major medical insurance, I can't afford
allergy testing or shots as a self-pay patient. I am presently trying the
protocol in Dr. Shoemaker's book, MOLD WARRIORS. The canister of
cholestyramine only cost $10 today at the pharmacy....I will keep my readers
posted. I am also looking into getting some Singulair samples from the doc
to see if I can breathe better and stop this hacking
cough.]
5. DR. BRADY'S BOOK ON
EMOTIONS AND PAIN
From a reader--
"I have read and am trying the recovery program in a book
called "Pain Free for Life: The 6 week Cure for Chronic Pain
without Surgery or Drugs" by Dr. Scott Brady. He believes
that many chronic pain illnesses in which no structural abnormalities show
reason for the pain, is caused by repressed emotions of anger, fear, and shame
that have been buried in the subconscious for years. He himself had been
diagnosed with many back problems and fibromyaligia and is now pain free.
He has a pain clinic in Florida. Dr. Brady talks
about pain prone prersonalities such as perfectionists, people pleasers,
stoics, legalists, fear prone, and combo personalities. I am a
combination of people pleaser and fear prone myself. Dr Brady recommends a
mind-body-spirit approach with a strong emphasis on depth journaling about
repressed emotions from the past and present . He stresses meditation and
guided imagery along with prayer and strong spiritual health. I have not
decided whether I totally agree with him yet, but I am doing his program and am
amazed at how much better I am feeling after doing the 20 minutes of
depth journaling daily about repressed emotions. I am a Christian
and my faith is what has allowed me to function at the level I do.
When I finish my journaling each night, I pray over it , give it to God and let
it go and boy does it feel good! I scrubbed my floor on my hands
and knees for the first time in about ten years and the only problem I had was
sore knees so next time I will wear knee pads. I have been using his Pain
Talk and not letting the pain hold me back and am now more active than since
before my fibro diagnosis. For me I feel his idea of Autonomic Overload
Syndrome might be right on as I developed fibro following the death of my then
36 year old brother twelves years ago. All of my pain is not going away,
but it sure is going down and I am doing things I thought I would never do
again.. Readers can find more info on Dr. Brady at his website at http://www.bradyinstitute.com/.
It is definitely worth the read even if you don't agree with him."
6.
ASTHMA
Reader responds to my "reactive airway disease"
diagnosis--
"My first reaction to reading your symptoms is that they
were mine. My question is have you considered asthma? My doctor dx'd my chronic
cough and chest pressure and tightness as asthma. I now
take Advair in the morning and at night every day and haven't used my emergency
inhaler for a year! It is so great to have one big health problem controled. It
would tie into the mold problem, Allergies to mold can give you
asthma. Also, is there any chance that you can move
to a drier place? I am worried that all this exposure to mold can be cumulative
and you could get worse as time goes on and your lungs get weaker. Will keep you in my prayers."
[FROM DOMINIE: Tried Advair
earlier this year. No luck. No help with Albuterol inhaler
either. We are talking about moving to the coast - my Ph.D. virologist
sister-in-law's suggestion - to get away from the Florida inland mold.
Would have to leave the peak of my career as a music teacher here, though, and
that's a huge decision.]
7.
COSTOCHONDRITIS
A pulmonologist/D.O. I consulted 6 months ago says I don't
have anything wrong with my lungs - that this is costochondritis (inflammation
of the sternum). I may have that, but must disagree with him - it's also
something in the respiratory system - I can tell when I get around allergens,
like my dear little puppy I had to give away www.fms-help.com/Jasmine.htm.
[Sorry if this newsletter sounds
like it's all about me, me, me. I know that many readers are struggling
with similar symptoms, so I hope this issue will be of help and interest to
someone besides myself.]
8.
SLEEP
From a reader--
"What are you taking to get restorative sleep? I have FM,
sleep apnea and a
host of other problems. I've taken melatonin for months and
also DHEA with
no noticeable results.(I have a C-PAP machine that I also
use.)Ive tried
some sleeping pills which work for a while but I don't like
their effects. I
have racing thoughts and almost no energy to even go for
short walks. Could
you please send me a list of things that you take that
help you?"
9. STEALTH
PATHOGENS
From a
reader--
"Are
you able to have someone work with you to get the Igenex Western Blot
IGG, IGM tests? Lyme titre can be negative, in the presence
of a full blown chronic lyme state. The trick is to find someone that
is willing/ able to make use of the report once it's done. Also, if it
isn't lyme, there may still be stealth pathogens making you sick. After
reading everything I can get my hands on and understand about stealth
pathogens, I'm pretty well convinced they are at the root of most CFS, and
probably FM too. They damage the CNS [central nervous system] and
it's downhill from there. I pray you will find answers to your
health issues, discernment as to who might be able to help you in the medical
community."
10. ANTIFUNGALS
AND PROBIOTICS HELPED READER
From a newsletter reader
who has battled sickness for years--
"I didn't think my illnesses would
ever come to an end but indeed they finally are.
I've been on anti-fungals and probiotics for 17 months
now and I have no more colon pain, vaginitis, fibro
and a list of other things that have subsided. I was on
prescriptive anti-fungals and Natren probiotics for almost 6 months and then I
went on natural anti-fungals and Natren probiotics. It took a year before
I started seeing some real changes but now I'm doing so well I can't believe
it. It's a slow process when healing and restoring the small
intestine. The doctor said it could take 3 yrs to restore the
small intestine where the candida parasites make small holes and then the toxins
get in the blood stream and cause all kinds of problems in different
places. Mold is a fungus and
has to be treated as such. But, again it's a long
process."
11. CHOLESTEROL IS NOT
NECESSARILY BAD
Got this from a reader - interesting story
of a lady who became a vegetarian but went back to being a red meat
eater--
12.
OXYGEN
From a reader--
"The past two years I have mirrored
your health circumstances [See www.fms-help.com/mold.htm]. I
initially got sick in the early 90's after receiving my first teaching position
in a sick building...I was finally diagnosed with Epstein Barr-fibromyalgia by
my gynecologist, but a neurologist suggested I had been environmentally
compromised (sick-building) + bad genes. I will not let this world tell me
that it's my genetic fault that I had CFIDS/fibromyalgia, Dominie. I
didn't have the money to try the products you endorsed, but when I did get
money, I tried OXYGEN therapy. I am back in public
teaching, and the chronic upper respiratory yuck is fading...I tried
stabilized liquid oxygen -- I am still using the original bottle...I
found this website doing CFS research, and I figured since Epstein Barr was a
type of herpes virus, I may as well give the Oxygen a try. Type in
Breath of Life in your browser, and you should get
results."
13. MISERY LOVES
COMPANY
From a reader--
"I have been recieving your wonderful
newsletters for some time now and has helped me tremendously. I was tested
for allergies which were horribly expensive..as you know and i am
allergic to every known mold!!! I am on drops
placed under the tongue once weekly and this coming May will be 2
years. I am afraid to say it isnt helping ..but i will
say i have a long way to go. As you stated in your newsletter,i too,lived
in a bad, bad moldy environment for five years.(Didnt know) I have chronic
sinusitis,chronic Bronchitis,asthma,you name it if there isnt a cure
for it, it seems as though i am finding out i have several incurable
things happening to me as each year goes by. Thought i would let
you know i,too, have the same problems with this."
[FROM DOMINIE: If there are no answers or
relief in sight, it is somewhat comforting to know there are others battling my
same monster.]
14. LYME
DISEASE
From a reader--
"I see there is another person who is
talking about Lyme Disease and proper
testing as the underlying cause of cfs
and fibro. I presently see a well
known Chinese dr. in New York.
He uses herbal meds and accupuncture. When
he checked my trigger
points and I jumped off the table, he said that fibro
is caused by the
Lyme bacteria lodging in the trigger points and
shutting
down blood flow which it does to the brain as well.
I have NO doubt he is
on the money.
I have seen Dr. Shoemaker
in Md. He is an expert in toxic mold, but do not
think your disease is
toxic mold. That is his area of expertise, so
everything to him is
caused by toxic mold. He does not truly understand
Lyme
disease and the fact that it is a
horrid neuro toxin and causes severe
immune dysfunction and
deficiency. I did take cholestyramine. It didn't
do
anything for me.
I don't know if you had the Igenex Lyme
test, but you can test negative and
still be positive. Some
of the drs. in the NY area will send a patient to
the lab 7 to 10 days in a
row for an Igenex test to try and catch the
bacteria when it might
come out of hiding from your cells, tissues,
ligaments etc. Those Lyme
literate physicians know a Lyme patient when they
see one. They do not
rely on tests exclusively, they use clinical
evaluation.
Just to let you know
tics carry every disgusting thing that exists on this
earth, including, mycoplasma, chlamydia, viruses, fungus, parasites,
Lyme,
Babesia, Bartonella, Ehrliciosis, Rocky Mountain Spotted
Fever and probably
l00 other things that have not been
named. Lyme is also carried by
mice and other
small animls, mosquitoes, fleas, flies chiggers and maybe
even spiders. It is generational,
can be passed on through mothers milk and
may be sexually
transmitted. The government should be ashamed for keeping
an
epidemic under wraps for fear of having to do something about
it! I have
been sick for so long I can't remember being well. (over 25
years). Hell on
earth is an apt description of this
disease."
[FROM
DOMINIE: I was tested for Lyme earlier this year and it was negative, but
if Lyme is so hard to catch, I feel kind of hopeless as a "self-pay" patient to
do any extensive and expensive testing. Most of us need a
miracle!]
15. BEE
PROPOLIS
From a reader--
"I was very interested to read about
your chest problem...I've had ME / CFS for more than 2 years now. In April
this year (about 9 months ago) i suddenly contracted bronchitis which never went
away. I've been on multiple antibiotics but i cant shake it off,
and i'm left with similar symptoms to you... chesty cough, tightness, fatigue
and a foggy head. I am left wondering if
the ME/CFS compromised my immune system so that the infection was able to take
hold... i am prone to bronchitis because i've got asthma but
antibiotics have always been totally successful in the past. Now i'm left
with this hideous lung problem which seems to be almost as
disabling as the ME/CFS. Very annoying. I have found that high doses of
purified Bee Propolis (3000mg, twice a day - every 12
hours) helps alot (at least temporarily) and totally stops the
phlegm, coughing, tightness and wheezing. The propolis also has an amazing
effect on my mood and has cured my depression (i have stopped taking my
antidepressants). I've had some mild side effects of some stomach
sensitivity and irregular bowell movements. Also some possible memory problems -
but that might be the ME and fatigue, and not the propolis. But propolis
has potential bad side effects - propolis can attack mucous
membranes - so i wouldn't recomend taking it long term."
16.
INSPIRATION
From a reader with mold
problems--
"Worry
looks around, sorry looks back, Faith looks up."
Love it!
17. PAIN SPRAY
(revisited)
From a reader--
"I also tried Dr. Franks Pain Spray
(referring to your item #4) and although it did not make me feel "wired",
it did NOT help any of my physical pain, fibro or otherwise. Also got the
run-around and took many calls to get money back on their "guarantee". Just
thought I should let you know."
18. MY
HUSBAND
Just reflecting here...I've been sick with
one thing or another all of my life (I'm 55.) What is called
FMS/CFIDS began in 1982. My husband says that it seems people either have good health or they
don't. He is healthy - thank God. He does pest
control - is exposed to chemicals, mold, filth, mice, rats, spiders and insects
of all kinds, etc. that would put me in a hospital, yet he is super healthy -
sleeps just 5-1/2 hours a night, wakes up full of energy, commutes 1 hr
each way to work, drives all over the county, sometimes has to work outside in
all kinds of weather, comes home and does my housework, yardwork, etc. It
amazes me what good health is like! I thank God for his good health,
because he has been my rock when I felt like giving up totally. He
understands my weakness, although he does not have it himself. He's not
perfect (don't tell him that, haha), but he's God's gift to me and I haven't
always had it this good. Our picture is on my homepage at http://www.fms-help.com/. Figuratively
speaking, Don is traveling down the "road of life" in a shiny brand new pick up
truck, whereas I'm stuck in a gas-hogging, rusty old clunker that breaks down
every few miles....frustrating!
19. ASTHMA? - DON'T INHALE
THE OILS
Although the oils have been wonderful
for other things that have plagued me, since I have had reactive airway disease,
I read in the EODR to not inhale the oils when you have asthma. Use them
topically only - a drop or two on soles of feet. Essential oils soak
through the skin to provide medicinal benefits to the bloodstream and
cells. Our skin is a big sponge! To get
DOM'S OILS NEWSLETTER, write me at
dombush@bellsouth.net and
request the OILS newsletter. My oils site is at http://dom.younglivingworld.com/ where
you can order a free report to find out why people are so excited about
rediscovering these ancient oils that were used as medicines. I began
using the Omega Blue
capsules (check my site for info) and I have no more
depression, despite lots of crummy things happening. My very smart
sister-in-law with a Ph.D. in virology told me that Omega 3's and Fish Oil were
really great for depression, so I decided to try the Omega Blue capsules.
It turned out to be a very good suggestion.
20. RATE YOUR
DOCTOR
Just heard from Brett Hodge, owner of
RemedyFind. They have been sold to Revolution Health, a start up company
created by Steve Case (AOL founder) and others, with the goal of bringing
constructive change to health care. The aim is to give people the tools,
information and support to actively manage their health and wellness. You can
now register at www.revolutionhealth.com/preview?code=uQgwZp8CMj.
When you register, be sure to use the email address and member name you
used at RemedyFind – so that we will be able to identify you and move
over your RemedyFind profile and treatment ratings. You’ll have
immediate access to everything Revolution Health has to offer on our first day.
Once you register, I hope you’ll visit us often at http://www.revolutionhealth.com/. You
can also invite others to this exclusive preview, and I hope you do.
They can access the site through the same address - www.revolutionhealth.com/preview?code=uQgwZp8CMj. Here are a few things you can do on the
site:
- Rate your doctor and see what others say
- Try a cool tool – understand
your risks – learn what to do about them
- Ask
health questions and get answers from people like you
- Fill out a profile and invite
others into your circle
- Learn about our upcoming health
membership program
21. DOCTOR IN MARIETTA,
GA
From a reader--
" I have been treated for fibromyalgia and
chronic fatigue for more than 5 years. In the past year, I have found a
wonderful doctor at the Fibromyalgia & Chronic Fatigue Center in Marietta,
Ga. Unfortunately it's a 4 hour drive, but worth it. Dr.
Bullington had my blood work sent to Igenex and another lab. I was
positive for Lyme disease, ehrlichiosis, Epstein Barr (off the charts), CMV,
micoplasma infection and a blood clotting disorder. My previous blood work
showed that I was not producing hormones, had under active thyroid and pituitary
glands,was not producing growth hormones (due to my sleep disorder) and was not
producing enough killer cells. I also have H-Pylori and diverticular disease. I
am almost afraid to have any more tests... I thought about joining a
local support group but I couldn't find an "I have almost everything in the
book" group. Thank God! (and some good genes) I have low pulse
rate, low cholesterol, low blood pressure and I am slightly underweight. I have
been on antibiotics for 3 months along with numerous other meds and supplements.
I probably would have given up years ago if I had not started reading your
newsletters."
Well, that's all for now. Wishing everyone a HAPPY NEW
YEAR!
Dominie Soo Bush
www.fms-help.com -
Dom's FMS/CFIDS website - lots of info - CHECK OUT THE LINKS
IN THE YELLOW BOX
100 Tips for Coping with Fibromyalgia & Insomnia
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE