DOMINIE'S
NEWSLETTER
DEC.
29, 2006
Below are 5 short topics. Be
sure to read #5, my latest experiment in getting rid of respiratory problems
caused by exposure to TOXIC MOLD last year. I would appreciate some
feedback. - Yours truly, Dom (the Guinea Pig...again)
1. LYME DISEASE OR
FMS/CFIDS?
From a reader--
"It might be worth your better health to be tested
with Igenex labs test for Lyme disease. It can be ordered from the Lab,
taken to your dr to have the requisition signed, have it drawn where ever you
get your lab work done and then send it out to Igenex for accurate and sensitive
testing. A good many people with FM/ CFS have underlying issues with
Borrelia and co infections. Chronic Lyme disease mimics more
than 300 diseases. Being tested is worth the effort. If there
are any positive bands from the test, it would indicate a need for you to find a
lyme literate dr. I was diagnosed with FM/ CFS in
April. In August my lyme test came back positive. Since then
I've been treated with antibiotics and am finding a measure of progress.
I'm not well by far, but am certainly better than I was. I was tested with a Lyme titre 5 years ago and it was negative.
It's important to have the Igenex Western Blot IGG and IGM, even if the titre is
negative IF you have symptoms. And the symptoms are those we have
withCFSand FM. I'm on a mission to be sure anyone I have contact with that
has CFS is aware and has the information necessary to make an informed
decision. CFS is a collection of symptoms indicative of an underlying
disease process of undertermined origin. I honestly think there are many
that are misdiagnosed, or that accept CFS and the final diagnosis and that just
isn't right. I hope I'm not being too pushy here. Your mold
sensitivity concerns me. Many with Lyme have multiple chemical
sensitivities as well. Please ... do a lot of Lyme related research and
make yourself familiar with the controversy of the lyme
tirtre."
[FROM DOMINIE: I was tested
for Lyme this year and it was, but this reader initially tested negative
also.]
2. LOW DOSE NALTREXONE - CAN
YOU HELP JENNY?
"I need to ask a favor from you and
your email recipients. Yesterday, I had a post-op appt. with my
reproductive surgeon who happened to mention the drug naltrexone as a possible
treatment to "cure" fibromyalgia. Now although I didn't agree with his
claim that it can "cure" fibromyalgia (because we all know better), I was
intrigued to hear about it. Once I started doing my research online I
found some interesting articles related to it (read excerpts below)...and was a
little schocked to hear that it's main purpose was to treat people
with an alcohol or drug addiction! While that's not the point, I am very
interested to hear if you or any other person with FMS or CFIDS on your email
list has heard of this drug or has tried it as a treatment option.
Seeing as how my recovery from my fertility-related surgery is complete and
we've been given the green light to start trying to conceive, I would love to
reduce the symptoms of FMS as much as I can before I get pregnant since it
appears that your FMS symptoms can be absolutely horrible to endure during
pregnancy. I hope to hear of some feedback!! Thanks for the help.
- Jenny jennifer.scott@chiefind.com"
Low-dose naltrexone
(LDN)
Low dose naltrexone
(LDN), where the drug is used in doses approximately one-tenth those used for
drug/alcohol rehabilitation purposes, is being used by some as an "off-label" experimental treatment for certain immunologically-related disorders,
including HIV/AIDS, cancer, autoimmune diseases, and central nervous system
disorders.
ReVia (Naltrexone)
is an opiate-receptor blocker medication that is approved for the treatment of
alcohol dependence (U.S. FDA). Naltrexone is also used to block the
effects of narcotics.
Although clinical studies are
lacking, some physicians believe that low dose Naltrexone (LDN) may be helpful
for individuals with auto-immune and immune related disorders. The theory is
that LDN may stimulate the pituitary to increase the production and release of
endorphins, which helps to regulate the immune system. The therapeutic dosage
range for LDN is from 1.75mg to 4.5mg every night. Dosages below this range are
likely to have no effect at all, and dosages above this range are likely to
block endorphins for too long a period of time and interfere with its
effectiveness. NOTE: Low dose Naltrexone needs to acquired from a compounding
pharmacy (they either grind up the 50mg tablets of naltrexone to prepare the LDN
capsules, or use naltrexone, purchased as a powder, from a primary
manufacturer).
There is growing recognition in the scientific community that autoimmune
diseases result from immunodeficiency, which disturbs the ability of the immune
system to distinguish "self" from "non-self". The normalization of the immune
system induced by LDN makes it an obvious candidate for a treatment plan in such
diseases.
The experience of people who have autoimmune diseases and who have begun
LDN treatment has been remarkable. Patients with diagnoses such as systemic
lupus, rheumatoid arthritis, Behcet's syndrome, Wegener's granulomatosis,
bullous pemphigoid, psoriasis, and Crohn's disease have all
benefited.
Because LDN clearly halts progression in multiple sclerosis, its use has
been more recently extended to other neurodegenerative diseases, such as
Parkinson's disease and amyotrophic lateral sclerosis (ALS or Lou Gehrig's
disease) whose etiology remains unknown but for which there is suggestive
evidence of a possible autoimmune mechanism.
In addition, people with
fibromyalgia and chronic fatigue syndrome have had marked improvement using
LDN, suggesting that these entities probably have an important autoimmune
dynamic as well.
[FROM DOMINIE: See my previous article about low dose
naltrexone at www.fms-help.com/August2005 - Topic
#48.]
3. GOOD ADVICE FROM A READER
"The happiest people don't
have the best of everything. They just make the best of
everything." [FROM DOMINIE: Aaaaamen! We can make lemonade out of
lemons.]
4. WIRED FROM PAIN
SPRAY
From a
reader--
"I ordered "Dr. Frank's Joint and Muscle Pain Relief
spray" (I'd been hearing about it for a while) and while it may help others, I
was one of two in about 12,000 people who became "wired" from the formula. (it's
a bunch of homeopathic remedies) After the second day, I couldn't fall asleep at
all...felt like I'd had about 12 cups of
coffee.)"
5. DOM'S LATEST EXPERIMENT
As most of
you know, I have been sick for over a year with major respiratory problems
caused by exposure to toxic mold at my former workplace. A kind reader
sent me the fascinating book called MOLD
WARRIORS by Dr. Ritchie Shoemaker. I have been reading it
and decided to try cholestyramine (Questran) to lower my cholesterol
level (which is high - around 252), and also to bind and remove
mold and toxins from my body. This experiment will begin today,
Dec. 29.
Dr.
Shoemaker says fibro and CFS are incorrect diagnoses. He believes
these are biotoxin or neurotoxin illnesses. If I had the money, I
would fly to MD to see him, but my insurance is for hospitalization only.
It does not cover doctor's office visits, tests, etc. But it does have a
prescription card that helps somewhat. BTW, for all of us who need meds to
function, Wal-Mart now has $4 generics on hundreds of common
prescriptions. This can save us self-pay patients a bundle of
money!
My doctor at
St. Vincents in Jacksonville says I now have reactive airway
disease. I have chronic cough and chest pressure and tightness,
not relieved by anything but Tussionex (codeine cough syrup - $40 per
bottle). Just before Christmas, I had to give away my darling puppy,
Jasmine www.fms-help.com/Jasmine.htm,
because her dander was making my breathing problem worse. It was such a
sad decision to make and we shed many tears! Fortunately, Jasmine went to
a good home - close friends of ours from church with two girls and they love her
already.
Well, I have
to get back to teaching next week. I can only hope the Lord will send me
the answers I need for my health before I have to go back. I have 34
wonderful students waiting for me and a wonderful School of Music to teach at,
if my health will only hold up.
If you have ever tried CSM (cholestyramine or Questran) for
mold sickness, would you please write me at dombush@bellsouth.net? I would love to hear your story. If anyone has been to Dr.
Ritchie Shoemaker in MD, I would also be interested to hear about him.
As I think
back on my own onset of fibro in 1982 at age 30, I had been living in a damp
concrete block duplex in Gainesville, Florida that had mold growing inside the
house. I had to bleach the interior walls frequently. I now wonder
about my fibro diagnosis. Mold toxicity causes almost identical problems
as FMS/CFIDS.
I am doing
better with driving around town wearing my "cataract surgery" sunglasses to cut
down on visual stimulation from too many objects flashing across my mind as I
drive. It fatigues me terribly - especially the strobe-light effect of
sunshine coming through the trees as you drive along. My husband came up
with the dark sunglasses idea.
My
sister-in-law (Ph.D. in virology) thinks that I need allergy testing
again. Back in 1990 when I had this done, I was covered by insurance for
the tests and shots. Now, it is financially out of reach for us. I
am so hoping the cholestyramine is the answer.
Well, I hope
you had a beautiful Christmas season, minus hassles with dysfunctional
relatives. My highlights this month were singing in the Christmas
cantata, playing for Christmas church services and singing a solo at the
Christmas Eve Candlelight Service ("Sweet Little Jesus Boy," a beautiful old
spiritual). These things really light up my heart and soul!
Although I have had this miserable, fatiguing and highly
irritating respiratory illness for over a year, I am thankful to still be
alive and have my husband, my mother, and Buster, my little dog who I don't
think I am allergic to. I believe that as long as we are alive on this
earth, God has a purpose for us.
Please write
me if you have any experience with mold illness. I am most interested in what
you have to say. I have been on antibiotics and anti-fungals to no
avail. CSM will be my new experiment! I'll let you know how it's
going. If you have a few minutes, check out
Dr. Shoemaker's site at www.chronicneurotoxins.com and also www.moldwarriors.com. My
mold page is on my
site at www.fms-help.com/mold.htm.
It could be
that what most of us have is a biotoxin illness, rather than
"FMS" or "CFIDS" (just a constellation of symptoms that are caused by
neurotoxins that can be measured with specific tests).
Happy New
Year to All!
Dominie Soo Bush
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.