DOM'S FMS/CFIDS/M.E.
NEWSLETTER
August 3,
2009
A Christian-based newsletter for people with
Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS),
or Myalgic Encephalomyelitis (M.E.) and their
families.
40 TOPICS IN BLUE. (Don't
miss RED topics.) READERS' COMMENTS IN
BLACK. MY COMMENTS IN
TEAL.
1. READERS
WRITE
"Thank you for your
helpful newsletters, I don't feel quite so alone. Like you, I was
once a very high functioning person full of life and
ambition. Now I struggle to make it through each
day."
"During 7 years of being
housebound from CFS/MCS, it was your emails and newsletters that
God used to give me the hope and love I needed not to
give up."
"I am severely insomniac.
Have had fibromyalgia most of my life. My life is a living
hell."
|
"I just read your site. The links and
suggestions gave me information I didn't have
before." |
"My daughter and I continue to read each and
every newsletter that you publish. Within the context of the articles, we find
the strength and inspiration to carry on."
"Oh what a dream, to have more
life-force, to serve our Lord better, and have a home that doesn't look like
a doper's crash pad. I am excited by your
protocol, and admire your courage."
"I have fought to get treatment for so many
symptoms and diagnoses for over 40 years. The faith I have in God gets me
through the terrible days and nights. My family still seems to be
clueless after so many years."
"I am loving your info
on Fibromyalgia."
"Your understanding of the
problems we have make me feel a bit less like a melodramatic
sniveler."
"I've been a reader for 7
years now and most of what I know about CFIDS/FMS I have learned from
things you have shared."
2. FIBRO
& DENTAL ISSUES
From a
reader--
"The Fibromyalgia Dental
Handbook"
FROM DOM: This
book got mixed reviews on amazon - check out reviews before
purchasing.
3. LOW
DOSE NALTREXONE (LDN)
From a
reader--
"I receive a fibromyalgia newsletter that
comes from a group in North Carolina. They mentioned a breakthrough
medicine that apparantly is working fantastic for Chronic Fatigue
Syndrome. It's actually a very old medicine - but just recently tried on
CFS at VERY VERY LOW DOSES. Have you heard anything on Low Dose
Naltrexone? At large doses - like 50-100mg, it has been
used to treat detox of heavy drug users - like herion and cocaine users,
etc. But, at doses of 3mg - 4.5mg - it seems to reverse Chronic
Fatigue. The theory is that certain CFS suffers have experienced
damage to the pain/pleasure center of the brain - either by a virus or
extended trauma - and the brain no longer produces endorphins. Or, very
limited endorphins. Endrophins are also needed to suppport the immune
system - thus folks with endorphin depletion appear to have auto-immune
disease - but they don't! Apparently, the use of LDN is not
addictive - some have been able to use it for years. What information have
you heard or found on it? Everything I have tried is no longer
working, and I feel my CFS could very easily be caused by
endorphin-deficiancy. I would like to try LDN, but cannot find a Dr. who
believes this scenario!"
FROM DOM: I have
reported on low dose naltrexone (LDN) in several past newsletters.
Try a search for either "naltrexone" or "LDN" at www.fms-help.com/newsletters.htm. Then use ALT-F (or your browser's
"FIND" feature) to located the topic on each page. I would love to
hear from readers who have tried LDN and how it worked for you. Also,
how did you find a doctor willing to prescribe this? Write
dombush@bellsouth.net.
4.
PREGNANCY & FIBRO
"Do you have any info or newsletters regarding Fibro/CFS
and pregnancy?"
FROM
DOM: Very important topic! I hope some readers with
FMS/CFIDS who have been pregnant will write Teri about how things went for
them. Pregnancy has been discussed in some of my past newsletters -
search at www.fms-help.com/newsletters.htm for the words pregnant, childbirth or
pregnancy.
5. CPAP
MASK
6. CHANTIX
UPDATE
From a
reader--
"It has been nearly a year now since I began
Chantix. My pain is still much lower, my concentration still improved, my
memory still much better, my abilities to be more responsive with my muscles has
returned to that which I'd had prior to Fibro...you know, regarding dexterity
and such. Of course, I still have to monitor my physical activities as the
"day after" still occurs, but, to be ALIVE again!"
7.
MYCOPLASMAS & FMS/CFIDS
From
Steve--
Thank you for sharing your trials and faith
with me.
"Though he slay me, yet will I trust in Him:...
He also shall be my
salvation:.."
"For I know
that my redeemer liveth, and that he shall stand
at the latter day upon the
earth: And though after my skin
worms destroy this body, yet in my flesh
shall I see God:
Whom I shall see for myself, and mine eyes shall behold,
and not another; though my reins be consumed within me."
- - - - - - - - - - - - - - - - -
- - - - - - - - - - - - - - - - - - -
If you would like to understand what CFIDS
and similar diseases
actually are, and how they work, I have several hours of
audio
and video on the topic archived here.
http://biopsyops.org/Media/At first, it all may sound a bit incredible, but please be assured
that
world renowned microbiologist Dr. Garth Nicolson (with
over
600 peer reviewed journal articles to his name, and with him, his
wife and daughter all having suffered from the disease themselves)
knows
exactly what he is talking about.
I have
done what he said and am back to work myself after being
debilitated myself
much like you yourself were.
Grace, Peace and Great Joy in Jesus
our Lord and Saviour!
8.
INABILITY TO TRAVEL
From a
reader--
"I enjoyed your story [I Couldn't
Sleep] at http://ccmusa.org/Read/Read.aspx?mag=CHG&y=2&i=1&a=3.
My illness began at age 19 after a six month infection. I just thought it
coincidental that we both started so young. I am now 62 and still have the
problem.I tried to take a car trip with my hubbie to another state but could not
make it, so I agree with you that short trips are all I can do."
FROM DOM: I have
been unable to travel more than 30 miles since working in toxic mold in 2005
www.fms-help.com/mold.htm. This is the one
lingering problem I still have. My brain just can't make all the
adjustments to changing stimuli (flickering light, sounds, etc.) When I
ride in the car with my husband to shop, etc., I usually wear dark sunglasses so
that my brain is not so stimulated. This wards off the feeling of collapse
so that I can stay out longer. Also, those of us with a severe sleep
disorder find traveling difficult, especially having to keep up with others in a
group. I never schedule work or appointments until after 12 p.m., because
this gives me time to sleep if I am not on a regular sleep
schedule.
9. SLEEP
AS AN "ART"
My response to a reader asking
how to stay on a sleep schedule when you have a sleep disorder:
"I don't take my
sleep meds at the same time every night, because if I take them and I'm not
"ready" to sleep they don't work - for hours - or even all night.
Sometimes I take my second dose before even sleeping from the first dose.
Can't say I always feel at the top of my game. My only secret is to not
plan ANYTHING before noon. That gives me time to get some sleep somewhere
somehow. A list of everything I've tried for sleep is at
www.fms-help.com/sleep.htm. A list of what I use now is at
www.fms-help.com/what.htm. My insomnia story is at
www.fms-help.com/insomnia.htm.
10. GOD'S
STRENGTH IS SUFFICIENT
From a
reader--
"Thank you for this article http://ccmusa.org/Read/Read.aspx?mag=CHG&y=2&i=1&a=3.
Of course it’s familiar because I too suffer from fibro, etc., but to
see my struggle reflected in your story is a reminder to me that God is
indeed near me through it all. Someday I will ask my Lord why he
chose me to suffer – but for now I realize there are many, many, many others who
are hurting more than I (both spiritually and physically) and His
strength is sufficient for me to carry on and live for
Him."
FROM DOM:
My pastor www.fms-help.com/MBC.jpg
says that the devil throws everything he can at those who saved and doing right
with their lives, but God uses what was meant for evil to refine and
purify us and make us more like Jesus. This is an encouraging truth!
2
Corinthians 12:8-10
"For this thing I besought the Lord thrice,
that it might depart from me. And he said unto me, My grace is
sufficient for thee: for my strength is made perfect in weakness. Most
gladly therefore will I rather glory in my infirmities, that the power of Christ
may rest upon me. Therefore I take pleasure in infirmities, in reproaches,
in necessities, in persecutions, in distresses for Christ's sake: for
when I am weak, then am I strong."
11. RUDE
DOCTOR
From a
reader--
"I am really upset and angry at my
doctor. I usually see him once a month, as I do take narcotic
pain medicine for my pain. I have been suffering with FMS, MPS, neuropathy
in my legs and arthritis for over 15 years now. I went to see him
this week . The week before I was in the hospital for eschemic colitis,
and the hospital was in the next state over, as I was visiting my son and
grandchildren for a week. So I told my regular MD about this, and told him
I'd get the records for him and he seemed very
uninterested. Then he told me he wanted to cut my pain meds in
half...as it is, even with my pain meds, there is quite a bit of
breakthru pain, but I refuse to take anymore than I am
taking. I told him that I can not do that and explained all about how I
was feeling and the pain I was in. Then he said to me "you don't
want to be like Michael Jackson, do you?"....I was shocked at
that! I asked him how he could even think of that, as I have been his
patient for over 3 years now. Then he said that the pain could be
all in my head!!!! That did it, I am dumping him and getting another
doctor...what is the problem with him? Could it be all of the
sudden he is afraid to give me my meds because of what happened to MJ? He
was so rude and uncaring, I just could not believe it...Just
had to vent....Wondering if anyone else has had a similar
experience."
12.
MYALGIC ENCELPHALOMYELITIS (M.E.)
Myalgic
Encephalomyelitis (M.E.) is a neurological condition (brain / brain stem damage)
caused by a virus. See Jodi Bassett's site at www.ahummingbirdsguide.com. Jodi lives in Australia, and in 1995
when she developed M.E., her doctor told her to keep
doing as much as possible. This caused irreversible damage to her
body. I think of the people in my life who have erroneously
given me this bad advice! Many people in the U.S. diagnosed
with CFS (Chronic Fatigue Syndrome) or FMS (Fibromyalgia) actually have
M.E. The onset is sudden. Read my CFIDS story at
www.fms-help.com/fatigue.htm and
my FMS story at www.fms-help.com/fibro.htm. You can also read 64 symptoms of M.E. on Jodi's site at www.hfme.org/themesymptomlist.htm.
Also, she has a great article about what M.E. feels
like at www.hfme.org/whatmefeelslike.htm.
13.
FETUSES FOUND TO HAVE MEMORIES
|
By Jennifer Harper, The Washington Times |
| |
|
"They weigh less than 3 pounds, usually, and are perhaps 15 inches
long. But they can remember." |
14. SLEEP
& LYRICA (PREGBALIN)
From a
reader--
"I've just started taking pregabalin, called
lyrica in the US I believe. Since then (only since 6th July) my sleep has
been the best it's been in years!"
15.
AMBIEN, LUNESTA, PROVIGIL
From a
reader--
"Read your info re: Ambien. I also used
it for a while and had the same issues as you. Food binges, short
term memory. I also had bed nightmares. My doctor switched me to
Lunesta. I have none of those issues anymore. Have taken it for over a
year now. I usually (if I'm lucky) get 6 hrs. of uninterrupted
sleep. Other than that I am only taking Provigil. It stopped the
brain fog for me. I can function almost normally most of the day."
FROM
DOM: My personal med list is at www.fms-help.com/what.htm. I've been using ambien (zolpidem) for 12 years (10 mg per
night, divided into 2 doses of 5 mg each - one at bedtime and one in the middle
of the night when I wake up). Lunesta was only good for a 2 hour "nap" and
was every expensive even with my prescription card. I have not tried
Provigil (it's for excessive sleepiness and narcolepsy). I never get
sleepy, just a sick, tense, tired and wired
feeling.
16. CHI
MACHINE HELPS FIBRO
Link from a
reader--
FROM DOM: This kind of makes sense, since our CNS (central
nervous system) is out of whack. If anyone has used the Chi Machine and
experienced relief of their FMS/CFIDS symptoms, insomnia, etc., I would love to
hear about it. Write dombush@bellsouth.net.
One Chi Machine ad says: "RESTORATION OF
BALANCE TO THE NERVOUS SYSTEM: If the parasympathetic and sympathetic
nervous systems fail to ensure balance of function, insomnia, excessive
dreaming, digestive problems, stomach pain. palpitation, anxiety, constipation,
neurasthenia and extensive forms of aches and pains as well as mental stress may
surface."
17. HOW TO
KEEP YOUR HEART FROM BEING TROUBLED
Do not let your heart be troubled. Christ told you how to do
this even when there is much to trouble you: Fix your mind on the fact that all
these troubles will soon be over. You will soon be going to a mansion in Heaven.
Christ gave you assurances of this:
1.
You have Christ’s word for it. And He would never lie: Let not your heart be
troubled: “you believe in God, believe also in me. In my Father’s house are many
mansions: if it were not so, I would have told you. I go to prepare a place for
you. And if I go and prepare a place for you, I will come again, and receive you
unto myself; that where I am, there you may be also. And whither I go you know,
and the way you know” (John 14:1-4).
2. You have done all that is required to go there simply by trusting
Jesus: “Thomas said unto him, Lord, we know not whither you go; and how can we
know the way? Jesus said unto him, I am the way, the truth, and the life: no man
comes unto the Father, but by me. If you had known me, you should have known my
Father also: and from henceforth you know him, and have seen him” (John 14:5-7).
3. You do not need to see the mansion which He has prepared. You have
seen His other good works: “Philip said unto him, Lord, show us the Father, and
it is sufficient for us. Jesus said unto him, Have I been so long time with you,
and yet have you not known me, Philip? he that has seen me has seen the Father;
and how say you then, Show us the Father? Believe you not that I am in the
Father, and the Father in me? the words that I speak unto you I speak not of
myself: but the Father that dwells in me, he does the works. Believe me that I
am in the Father, and the Father in me: or else believe me for the very works’
sake” (John 14:8-11).
4. You have the added assurance that comes from your answered
prayers: “Verily, verily, I say unto you, He that believes on me, the works that
I do shall he do also; and greater works than these shall he do; because I go
unto my Father. And whatsoever you shall ask in my name, that will I do, that
the Father may be glorified in the Son. If you shall ask any thing in my name, I
will do it” (John 14:12-14).
WISDOM KEY: “Let not your heart be troubled: you believe in God,
believe also in me” (John 14:1).
EXAMPLE: The Christians in Asia
Minor were being greatly persecuted for their faith. They were
scattered from their homes and faced torture and death. The apostle Peter wrote
to show them the purpose and rewards in this suffering: “Beloved, think it not
strange concerning the fiery trial which is to try you, as though some strange
thing happened unto you: But rejoice, inasmuch as you are partakers of Christ’s
sufferings; that, when his glory shall be revealed, you may be glad also with
exceeding joy” (I Peter 4:12-13).
Peter assures them that they were sharing in Jesus’ suffering to
bring salvation to mankind and would be rewarded with great joy when they see
Christ.
18.
CIGUATERA
From a
reader--
"Thanks a million
for your website and your comments.....I was looking for someone like you,
fighting CNS diseases. 10 months ago I got something
called ciguatera from eating fish [in a foreign country]
infected by a neurotoxin called ciguatoxina. My symptoms are very
similar to Fibro so far. And after almost 1 year, I start to realise that
is also affects my brain, besides all the rest of the problems of my body,
specifically fatigue that is the same as fibro. I can't do almost anything
and I am 34 years old. The doctors just prescribe neurotin,
amitryptiline and lyrica so far, but reading the side effects, I am not willing
to lose the part of my body that, at the moment, is still healthy. I prefer to
take just analgesics....at least it doesn't affect my head as
badly."
FROM DOM: Wow. I sure feel sorry for this
reader. Neurotoxic illnesses are awful to live with and so hard to
"cure!" I have been battling my way back to relative health after working
for a year in a moldy (hurricane damaged) building www.fms-help.com/mold.htm. See
Dr. Ritchie Shoemaker's site about Ciguatera at http://wwwchronicneurotoxins.com/learnmore/ciguatera.cfm. He is a doctor in Maryland who dealt
with the Pfiesteria outbreak there and knows a lot about neurotoxic
illness. I don't know if his protocols will help, but it's worth taking a
look at.
19. TIGHT
MUSCLES
From a
reader--
"Do your muscles feel constantly
constricted - mine never relax and I have serious neck problems
too. I always have had chiropractic adjustments to readjust
my neck (and scioliosis) and it doesn't work anymore - but puts me in
a huge fibro flare for a couple of days and am miserable - massage flares me up
too. Have you ever tried or know of anyone who has tried physical
therapy for fibro and neck problems?????"
FROM
DOM: YES!! I've had the same thing for years. Neck
problems, scoliosis, etc. Visits to numerous chiropractors (I have an
excellent one in St. Augustine, if anyone needs a referral.) Have you
tried taking magnesium for the muscle gelling and stiffness? Magnesium
helps muscles relax. It's one of my 100 Tips for Coping at
www.fms-help.com/tips.htm. My current meds and supplements are
listed at www.fms-help.com/what.htm. These help me cope and keep me relatively functional.
Something is wrong with our CNS (central nervous system, including brain) that
makes us feel like this. See more on my site at www.fms-help.com.
20. MALIC ACID FOR
FIBRO FLARE
From a
reader--
"I talked to my chiropractor today and told him how
bad I was hurting. He said it's a fibro flare. I didn't know fibro
hurt this bad (back pain wise) - it seems to have gotten worse for
me. He told me to take Malic Acid twice a
day for two days and that should stop the flare up. I bought some
with Magnesium in it (Magesium Malate). If you google malic acid all kinds
of stuff comes up for fibromyalgia pain. I just took one with
lunch and will give you an update in a couple of days to how it is
working. I am going on vacation this Saturday to visit with family for two
weeks so need to get better quickly."
21.
BLADDER INFECTION
From a
reader--
"I love colloidal
silver - I take it when I feel a bladder infection
coming on. I take two dropper fulls once a day for a few days and they go
away."
FROM DOM:
I use Colloidal Silver www.lifeplus.com/dominie for the same reason, and it has always
worked for me. I also spray it up my nose if I feel a sinus infection
starting. Those of us with FMS/CFIDS have compromised immune systems and
seems we always need to be attending to our bodies in some way to keep infection
or viruses from taking advantage of us.
22. IMMUNOVIR
(ISOPRINOSINE)
Isoprinosine Update: Immunovir - A Promising, Low Cost and
Safe Prescription
Antiviral
By: Alina Garcia MD
Fibromyalgia and Fatigue Center, Las
Vegas
Recent findings presented at the 2009 International Association of
Chronic Fatigue conference in Reno, Nevada Conference by University of Miami
researchers revealed promising potential for Isoprinosine (ISP) in the treatment
of Chronic Fatigue Immune Deficiency Syndrome. Sixty one patients were studied,
and treatment in all patients resulted in clinical and immunologic improvement.
Isoprinosine (ISP), a non-toxic immune
system stimulant, is a nucleoside, which is a basic compound comprising cells.
It is extremely safe and has been available in Ireland and Canada for 20 years.
Until now ISP has not been extensively utilized in the U.S. Although the
University of Miami study was small, and larger placebo controlled studies are
necessary, these preliminary findings are quite promising for sufferers of this
relentless condition.
ISP has been studied extensively in AIDS research
and Sub Acute Sclerosing Pan Encephalitis (SSPE). Researchers in Brazil have
published results that ISP may even inhibit replication of viral RNA. Latent
viruses are often associated with chronic fatigue and fibromyalgia.
ISP
has shown promise in treating CFIDS specifically via its immune modulating
functions. Cheney, et al, has shown that ISP enhances Natural Killer (NK) cell
function which is known to be suppressed in many CFIDS and FM patients.
I
have been using Isoprinosine in selected patients for several years with
favorable clinical outcomes in the majority of cases. ISP is more cost effective
than other immune modulators and may therefore be a more viable option for some
patients.
The Fibromyalgia and
Fatigue Centers Inc. are dedicated to treating chronic
fatigue and fibromyalgia using an integrated comprehensive approach.
For
more information visit www.fibroandfatigue.com or contact a patient
representative at 1-866-443-4276.
FROM
DOM: Anti-virals, especially cheap ones, are of interest to me because I
have to stay on 800 mg of acyclovir daily to suppress cold sores, which
have gotten out of control as I have aged.
23. BAKING
SODA
July 17, 2009 -
Daily dose of baking soda ‘can keep kidney patients off
dialysis’
FROM DOM: I use a high quality alkalizing agent
whenever I feel my body becoming too acidic. Write dombush@bellsouth.net for info.
24. HUBBY
SPEAKS
My
husband Don www.fms-help.com
often writes heartfelt emails to our family. For all his support of me, I
would like to feature an article by Don in my newsletters from time to time - so
here goes the first one. He says he wants to write one soon about living
with a spouse who has FMS/CFIDS--
"DEATH IS SURE A COLD FIVE LETTER WORD! I THINK WHAT BOTHERS US
ABOUT THIS WORD, IS THAT WE WILL ALL EXPERIENCE IT. DEATH IS NOT
FUNNY, BUT IT SURE IS ON HOW WE TRY TO BEAT IT! WE READ ALL THE
TIME ABOUT PILLS, MIRACLES, TREATMENTS THAT WE CAN TAKE TO MAKE
US FEEL AND LOOK YOUNGER, AND IF THAT DOES'T WORK - MAYBE A LITTLE
SURGERY. BUT THE BOTTOM LINE IS WE WILL FACE IT ONE DAY. FOR
SOME OF US THE ROAD IN FRONT OF US IS SHORTER THAN THE ROAD BEHIND US! AS
A CHRISTIAN, WHEN ONE OF OUR CHRISTAIN RELATIVES OR FRIENDS PASS ON, WE
HAVE - ON ONE HAND - A JOY THAT THEY WILL NEVER SUFFER ANY MORE
PAIN AND WE WILL SEE THEM AGAIN, BUT THE DOWNFALL IS WHAT THE LORD ALSO
GAVE US - AND THAT IS A HEART AND EMOTIONS AS CHRISTIANS WE MAY KNOW
HOW HAPPY THAT PERSON IS THAT HAS GONE TO BE WITH THE LORD, BUT WE ALSO
FEEL SUCH GRIEF AND SADNESS THAT WE WILL NOT BE ABLE TO HUG, TOUCH, OR
COMMUNICATE WITH OUR LOVED ONE OR FRIEND AGAIN! SOMETIMES THOSE EMOTIONS
COMES OUT IN TEARS, BUT FOR SOME, IT IS HELD IN FOR A LATER DATE AND IS
TRIGGERED DOWN THE ROAD, WHEN SOMEONE OR SOMETHING REMINDS US OF THAT PERSON!
I THINK THE HEART IS WHAT STORES OUR WONDERFUL MEMORIES OF A LOVED
ONE! IT SEEMS LIKE THE HEART, HAS THE ABILITY TO RELEASE OUR
EMOTIONS, WHEN WE NEED TO PULL UP A LAUGH OR A TEAR ABOUT OUR LOVED
ONES! WOULDN'T IT HAVE BEEN SAD IF GOD, WHEN HE MADE US, HAD NOT LEFT OUR
MEMORY OF GOOD TIMES, SO THAT WE CAN PULL THEM UP AT ANY TIME WE WANT TO SPEND
TIME WITH OUR DEPARTED LOVED ONES."
25. YEAST
(CANDIDA)
From a
reader--
"Along with mold being extremely toxic, I have also have
recently found that fungus (overgrowth) called Candida in humans can cause
a myriad of different symptoms, many which include CFS and FMS. I had
several outbreaks of Candida over the last several months (thrush, around the
mouth) after taking two courses of antibiotics.. Although, I do have a
immunodefiency IgA which makes it difficult for my body to fight
Candida, my alternative medicine practitioner did the tests and found that I
have a SEVERE cause of systemic Candida. Since then, I have been on a two-fold medication
regimen for intestinal parasites and I have also for the last 2 1/2
weeks been on a Candida diet consisting of only whole
foods; no gluten, corn, dairy, peanuts, sugar (anything white), no
fruit, and only vegies that are non-starchy. This list continues
on what not to eat but I can say that I am feeling MUCH better. My
mental clarity has improved and my episodes of fibro pain have
lessened. I plan to use this diet as a springboard for more
healthy eating. I have never eaten so many vegies and salads in my
life and I love it! If whole foods can cure diabetes (as seen on TV
recently in AZ)...who says that the same can't be said for CFS and FMS.
Candida can make you severely ill. For
more information on Candida go to www.health-truth.com."
FROM
DOM: Yeast overgrowth (candida) is in my 100 Tips for Coping with FMS
& Insomnia - click on www.fms-help.com/tips2.htm#23 to read about yeast.
26. FUNGUS AMONG
US
From a
reader--
"Have you ever heard of Doug Kaufmann? First of
all, he is a Christian; second, he is TV on his own show called "
Know
the Cause" on the Christian broadcasting station. He thinks just about
every disease is caused by FUNGUS! - like mold from old homes and
businesses. He is
great! He also has a website called
www.knowthecause.com. He recommends this
nose spray and throat spray from Seagate, and I'm telling you just 1 squirt in
your throat and the pain is completely gone. I also have a severe case of
Fibromyalgia, Thyroid (hypo), severe osteoporosis and everything you mentioned
on your website
www.fms-help.com, EVERYTHING!"
FROM DOM: I
corresponded with Doug Kaufmann many years ago about fungus. I probably
have mentioned Doug in some past newsletters www.fms-help.com/newsletters.htm. (I've been writing FMS/CFIDS newsletters since 1996, but
only have archived those since 2003.) Doug's site http://knowthecause.com is so fascinating, comprehensive and helpful. He has
a SEARCH BOX on his site. Type in the MOLD. Wow!! I've
had 3 severe encounters with mold in my fibro-lifetime, most recently in
2005 when I worked in a hurricane damaged ("sick") building in Florida
www.fms-help.com/mold.htm - but check out Doug's
site!
27. ROOT
CANAL
From a
reader--
"I couldn’t agree more on mold and fungus contribution to
chronic fatigue/fibromyalgia. On a different note – I just got back
from a root canal therapy procedure. Turns out that
the root under my front crown was carrying quite a long term
extensive infection that extended from the root up under the sinus
cavity. The endodontist suspects that this infection has
affected my general health in some way. This was discovered
purely by accident by my diligent regular dentist. I was treated
unsuccessfully for sinus issues a few times in the past year thinking that was
what was going on. Though I will be on antibioitics which most likely will
exacerbate my candida issues, I’m expecting some improvement in the next month
or so. There are so many contributing factors to our
health. Next month I get tested for heavy metals toxicity which I have read
about on your website. Thanks for being willing to cover it
all!!"
28. GLUTEN
FREE
From a
reader--
"We are having a really wet July here in Canada! So mold is on
my mind too! Despite all the rain I am doing OK. I think it is because I am
finally gluten free. That took a while believe me! But I felt
better right away. After going off wheat, eating any felt like
someone had kicked me in the gut and I immediately looked like I was 8 months
pregnant! Then rye bothered me... and so on. I suppose in the end not eating
baking means that you eat healthier!"
29. HYPERBARIC OXYGEN & OZONE
From a
reader--
FROM DOM: This is a
most interesting article!
30. AMERICAN HEALTH
CARE BILL
From a
reader--
"Thanks for sending this out. I
agree with you even though I am of a
different religion & I'm not
conservative. This huge mandate is being
jammed through way too quickly. I
was always in favor of having some
kind of healthcare for all American
citizens (not just employees) but
this mandate is very scary to me. First, it
was a big rush to get the
massive bank bailout through, now this... I never
thought I'd be
agreeing with Rush Limbaugh but I don't like what is going on
these
days. Thank you for all the work you do to get good information
out! It
seems pretty obvious to me that some kind of eugenics
program is
happening but most people I mention this to think I'm out
of my mind.
It's too much of a paradigm shift for most people to even
consider.
The people who have been fighting Fibro, Lyme, CFS/ME, HIV,
etc...
many of us understand. We are some of the ones who are on the
front
line."
31. IS
FMS CONTAGIOUS?
From a
reader--
"Assuming what I have is indeed FMS (according to
two rheumatologists), if it were simply transmitted like a virus (saliva, body
fluids, etc), my entire family would be infected--especially my wife of 22 years
(and girlfriend for 7 before that) should be showing some signs of FMS.
But she is not. If the cause of FMS was something as large as a virus,
they’d have found it by now. It must be something very, very tiny.
Or it could be whatever is leftover once our immune system reacts or overreacts
to a common virus. There are as many theories as stars in the sky.
I’ve had persistent symptoms since 1991, waxing & waning symptoms since
1972. The cause could be almost anything.
I once had a Chinese fellow tell me about a
couple (both from China) with “Fibro” who discovered they got better when they
cut calorie intake below a certain threshold. Everybody has a theory I
guess, but I also discovered a waning of my symptoms during a period in 2006
when I was not eating much during radiation therapy for a benign but aggressive
tumor. The radiation shut down my remaining saliva glands resulting in a
temporary loss of taste, and with it loss of appetite. Another time my
pain ceased during a week-long moderate fever. I’m just one person.
Add up all these stories for all FMS patients, and it is no wonder
doctors are confused!"
32. MYCOPLASMAS &
CANDIDA
From a
reader--
"For the last year
I've been working w/ a doc (Michael Powell in Sacramento CA) who believes
CFIDS/FMS is mainly caused by mycoplasmas. He did much blood work on
me and found 4 major mycoplasmas including chlamydia pneumonia,
HHv6, walking pneumonia, and EBV. There is much written on the chlamydia
pneumoniae - it's called the heart attack virus and very common for people w/
CFIS to have it. The first few months of treatment they put
me on therapeutic doses of many supplements (B-12 injections, magnesium
injections, high vitamin C, iodoral iodine, T3 thyroid, and others). Then
they tried low dose antibiotic therapy. I couldn't
tolerate it due to horrible candida. The doc said that's
common and he stopped the antibiotics and put me on diflucan
and nystatin for the yeast. This was so helpful! I lost 20 pounds
(which I'd gained suddenly a year earlier for no apparent reason) in 2 months.
Also after a year of no periods I got regular cycles again after 2 weeks on
the meds. I must eat an anti-candida diet also. After 6 months of on
again/off again treatment w/ the meds and strict diet the yeast is being kept at
bay. Now I am managing it w/ very strong probiotics and digestive enzymes.
So far that's working. My mental symptoms like anxiety and
depression have improved since the candida is more
controlled."
33.
NITROGLYCERINE HELPS PAIN & "COLD" FEELING
From reader who
submitted Topic 32--
"The second treatment that's had significant
results for me is nitroglycerine. It improves
circulation and that's the main reason docs think it helps. It has
significantly reduced my pain to where I am down to 10% of the
meds/doses I was taking a year ago. There are many great
articles online about nitroglycerine and FMS. I now wear nitro. patches
but started w/ oxytocin injections (those could lower my pain from a 9 to a 3
about 15 min after injection!) If you haven't covered this topic yet and
want links to research let me know and I'll send them. I'd be curious if
other readers are using or have tried nitro. It's inexpensive, covered
by insurance, and no dangerous side effects so I'd say it would be worth a try
for many, especially those w/ severe pain. Also it helps keep me from
being freezing cold all the time."
FROM DOM: Write dombush@bellsouth.net with
comments. I hear from so many readers who feel cold all the time - maybe
nitroglycerine will help?
34. FORGIVING
ABUSERS
From reader who submitted Topics 32
& 33--
"The third (and maybe most
important) "treatment" has been spiritual in nature. Dr. Powell believes PTSD
often plays a role in triggering FMS and CFIDS so he wanted me to do cognitive
behavior therapy. Instead, I chose to join a counseling group at church to work
on learning how to forgive others and heal from spiritual and heart wounds. With
the help of Christ and the group I have worked through forgiving people who
abused me in my past. It's been a year of intensive, often painful, tedious work
involving much prayer. I've confronted many fears and opened my heart fully to
the Lord. Christ can truly bind up our hearts and until we surrender our
hearts fully to Him and let Him into the dark places I believe we
can never be free of sickness of any kind."
35. COPPER TOXICITY
& BRAIN MALFUNCTION
From reader who
submitted Topics 32, 33 & 34--
"I just had more labs
done and next month I will go back in for results and hopefully be able to start
the low dose antibiotics again. I will also start a metal detox med as I am
extremely toxic in copper. They are testing for other
metals too. There is much written online about copper toxicity and it
often plays a role in nerve and brain malfunction issues."
36. SWINE FLU &
VACCINES
From a
reader--
Flu Shots Put
Children in the Hospital
37. COMMON
VARIABLE IMMUNE DEFICIENCY & FLU SHOTS
"Do you get flu shots, and are you getting
the one for H1N1 this season? My immunologist wants me and my
husband to get these. Right now I have a lung infection called
bronchiectasis www.nhlbi.nih.gov/health/dci/Diseases/brn/brn_whatis.html. I have had CT Scans and am on my second round of antibiotics
plus prednisone...which I hate! Beside fibro, I have Common
Variable Immune Deficiency...I get asthma and pneumonia, and bronchitis
often, and end up in the hospital on IV's. I am on weekly infusion
Vivaglobin for my immune system...I don't make many B cells, I take iron, and D
because I am deficient in those areas too. I want to avoid any type
of flu, it could kill me...But I hate all those foreign drugs in me...Any
suggestions?? Ever hear of others with these diagnoses? I would like
to hear from someone who has this too." - Sandie lesandsandi@yahoo.com
FROM DOM: My response to
Sandie was that I don't get flu shots because I'm afraid of what they will
do to my fragile immune system. I've been using i26 Complete Support since
2001 www.legacyforlife.com/dominie and will hope for the
best. Here's an account from a
newsletter reader who took the swine flu vaccine in 1976, but wishes to remain
anonymous--
"I took that shot in 1976 because my grandfather, who
was only 28 years old in 1918 (with 2 kids, my father then 2 years old, and my
uncle Tony who was only 4 years old) -- he died from swine flu during the
epidemic. He did not even last 24 hours. I was afraid I would get it too,
so on my last day of work at the Newspaper where I worked, I went for the shot.
They lined us up like cattle and gave us NO LITERATURE to read on it. I took the
shot even after watching a few people pass out from it. I thought they
were just afraid. I waited to catch a bus to go home. I began feeling
sweat running down my back and within an hour I had a 105 degree
temperature. I went to bed without dinner. When I woke up the next day I
had boils all over my face. I had to go and have my face frozen with nitrogen
and injections of cortisone. Then after they killed the virus on my skin my hair
began to fall out. I had to go back to get cortisone injections in my
head. I was a mess and wore a wig for a long time due to hair loss. Later
I was treated by a doctor who almost killed me. I was on my death bed 3
times at the age of 26 to 27. I ended up in the hospital on my honeymoon from
adrenal failure. My now ex-husband rushed me to the hospital and they hooked me
up to cortisone drip to get my adrenals to work. I have never been the same
since. my condition has now spiraled into a severe case of Fibromyalgia
and I am on complete disability." http://www.askthegooddoctor.org/Critical%20Alerts.htm
38. MANUKA
HONEY
From a
reader--
http://www.benefitofmanukahoney.com/ - Manuka Honey is a premium medical-grade
honey, exclusively found in the New Zealand region. It has been discovered
that this unique type of honey contains extraordinary healing properties that
are capable of treating a wide spectrum of health conditions such as ulcers,
acid reflux, gastritis, strep throat, acne, wounds, burns, eczema, ringworm,
wrinkles, MRSA Staph infections, etc.
39. AMYGDALA
RETRAINING
From Ashok Gupta to a
reader--
"Hope you are well. You may remember that I contacted
you a while back concerning a new treatment called "Amygdala Retraining" for
patients with ME/CFS and Fibromyalgia. Since then, the treatment has gained more
awareness across the world, which has enabled us to start some
preliminary independent trials which I shall keep you informed
of. The previous Clinical Audit paper is scheduled to be published in
a peer reviewed journal in Spring 2010. This Clinical Audit of 33 patients
showed that 90% of patients improved, and two-thirds of patients went on to make
a full recovery or very close to that mark within one year (Average number of
years with illness, 10.5 years)
I wanted to let you know that
the first 3 hours of the DVD recovery programme are now available to
view free online for members of your support group (links are below which you
can email to people if you like). These free videos allow people to understand
the hypothesis in layman's terms, and see if it is relevant for them. If some of
your members do not have access to the internet, we can also send them a DVD of
the videos for free in the post. Furthermore, I was wondering whether
you might be interested in sending free DVDs to your members in any newsletter
that you might send out via normal mail. We have had some patient groups send
out the DVDs to their members with positive feedback. I would also be happy to come and give a talk at your patient group
meetings if that is logistically possible.
A new article on the hypothesis has
been published on the Prohealth website which has some updates to the
original hypothesis, you can view the articles here:
http://www.prohealth.com//library/showArticle.cfm?libid=14508
http://www.prohealth.com/library/showarticle.cfm?libid=14706 (Question and Answer Session)
There is also an update to my original
medical hypothesis, after I presented a poster at the IACFS/ME conference in
Reno (USA), it is available to view half way down the page here: http://www.guptaprogramme.com/html/medicalPaper.asp . This incorporates observations about latent
virus reactivation, and toxicity.
Please let me know if you would like to send out any
free DVDs to members,
Kind regards
Ashok
Just got this interesting idea from a reader who purchased Ashok Gupta's CD's--
"I purchased the amygdala retraining kit. While I haven't had CFS symptoms for going on 16 months now (and I'm expecting that to continue), I do find my anxiety increasing. I started reading through the accompanying book last night, and what he's presenting is solid as far as neuropsychology goes. I also think he could have a much broader base if he marketed the system to people with generalized anxiety disorder and other anxiety issues. In fact, if he did so, he might be able to help people BEFORE their amygdalas get so over stimulated they can't shut off."
40. DOM'S
UPDATE
My life would be just about perfect if I could only
enjoy it! Not many people get to work in the field they love (for me,
music and teaching), but when you feel bad so much, it isn't fun at
all. Still, there are so many people in much worse shape,
like those dear folks languishing in nursing homes or suffering
in burn units, so I try not to take myself too seriously. (I can throw
some big pity parties.) What starts my feelings of extreme mental,
nervous, and physical suffering is not sleeping well or having
excessive stress. If I can keep these 2 factors under
control, I feel almost normal, like today. What a joy it is to have
reasonably good health! Fortunately, those awful days do go
away. I found a lot of things to help me cope, which I listed at www.fms-help.com/what.htm.
Of particular importance to me are sleep meds. My insomnia story is
at www.fms-help.com/insomnia.htm -
I've had a sleep disorder since I was 16. I am 57 now. Insomnia has
basically wrecked my life and my health. I am SO grateful for my doctor
(internal medicine) helping me find the right meds for my sleep problems.
He said if I can get enough sleep, the rest of my health complaints would go
away. I am thankful that I only had pain with my fibro for the first 14
years (1982-1996) www.fms-help.com/fibro.htm. I
have been 95% pain free for many years now, thanks to various things I found,
listed on the page mentioned above.
On a positive
note, I had such a blessing the other day! A friend called to
ask if I was okay after playing for a funeral. She said, "I know you have
health issues, so I just wanted to check on you." I called her back (in
tears) to thank her for her kindness. I was so touched! Few people
realize the agonies we go through because it doesn't show on the
outside. Sympathy (or at least concern) sure felt good for a change.
Most of us with FMS/CFIDS/ME suffer alone,
because others don't know or notice. Actually, I went to 3 funerals that
week. Watching friends decline into death was heart-wrenching.
We all need to prepare ourselves for this inevitable event. These words
from the apostle Paul (I Corinthians
15: 42-58) mean a lot to me--
42So also is the resurrection of the dead.
It is sown in corruption; it is raised in incorruption:
43It is sown in dishonour; it is
raised in glory: it is sown in weakness; it is raised in power:
44It is sown a natural body; it is raised a
spiritual body. There is a natural body, and there is a spiritual body.
45And so it is written, The first man Adam was
made a living soul; the last Adam was made a quickening spirit.
46Howbeit that was not first which is spiritual,
but that which is natural; and afterward that which is spiritual.
47The first man is of the earth, earthy; the
second man is the Lord from heaven.
48As is the earthy, such are they also that are
earthy: and as is the heavenly, such are they also that are heavenly.
49And as we have borne the image of the earthy, we shall also
bear the image of the heavenly.
50Now this I say, brethren, that flesh and blood
cannot inherit the kingdom of God; neither doth corruption inherit incorruption.
51Behold, I shew you a mystery; We shall not all
sleep, but we shall all be changed,
52In a moment, in the twinkling of an eye, at
the last trump: for the trumpet shall sound, and the dead shall be raised
incorruptible, and we shall be changed.
53For this corruptible
must put on incorruption, and this mortal must put on
immortality.
54So when this corruptible shall have put on
incorruption, and this mortal shall have put on immortality, then shall be
brought to pass the saying that is written, Death is swallowed up in victory.
55O death, where is thy sting? O grave, where is
thy victory?
56The sting of death is sin; and the strength of
sin is the law.
57But thanks be to God, which giveth us the
victory through our Lord Jesus Christ.
58Therefore, my
beloved brethren, be ye stedfast, unmoveable, always abounding in the work of
the Lord, forasmuch as ye know that your labour is not in vain in the
Lord.
www.BibleGateway.com helps me
locate verses on various subjects. Simply select the Bible
translation you prefer, then type in a word or subject. It
is so interesting! (Don't feel like reading? It will even read the
Bible to you.) I use BibleGateway almost every day. My personal
preference is the King James Version (KJV) www.fms-help.com/bible.htm. We must be born again to enter the kingdom of God.
My personal salvation story, Religious but Lost, is at www.fms-help.com/salvation.htm.
Well, I hope you
have many days of "feeling good" this month! My newsletters get rather
long, for which I apologize, but there is always so much info to share with
you - most of it comes from my readers! We all seem to have an "angle" on
this illness, so compiling the info into one place in a newsletter is
a labor of love for my fellow sufferers.
Til next
time,
Dominie
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.
