DOM'S
NEWSLETTER
August 2,
2008
A compassionate, informative
newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune
Dysfunction Syndrome (CFIDS), and Myalgic Encephalomyelitis
(ME).
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."
Reader's words are in
BLACK. My comments are in TEAL.
Topics are in PURPLE.
(Don't miss topics in RED!)
1. READERS
WRITE
"Your site www.fms-help.com is most informative and very
validating...it's a lonely feeling."
"I've spent countless hours on the internet
researching FMS, and your list of 100 things to help FM
sufferers www.fms-help.com/tips.htm is by far the
best information I have came across."
"I am very
intrigued with your story www.fms-help.com/fibro.htm, because
reading all you have gone thru is like
describing my life for the past 5
years."
"Your website www.fms-help.com is very well laid out,
and easy to read and understand."
"I have learned more from
your newsletters www.fms-help.com/newsletters.htm and
postings like this than I have ever learned in any one of the gazillion doctors
offices I have been in, during my own 13 year odyssey through the labyrinth that
is CFS & FMS."
"Your tips www.fms-help.com/tips.htm on coping
with [FMS / Insomnia] have been very helpful, it is hard to find people
who even acknowledge this condition."
"Between your great research and what
you learn from readers, I'll bet you have the most well informed
group online for FMS/CFS/ME!"
"I have been fighting the
fibromalygia dragon for 6 ˝ years now."
2. 5-HTP
SUPPOSITORIES FOR SLEEP
"Dr. Cafarelli has helped me sooooo
much with sleep - I was as bad as you were www.fms-help.com/insomnia.htm or
even worse. Now I sleep almost every night. However, when I have a
bad night, and they do happen I get sooooo afraid that its starting
again. I don't know if your readers are willing to try suppositories
but I'm here to tell you that his stuff has NO side effects, is soooooo calming
and promotes sleep and tranquility during the day. It has 5-htp in it, i
took it orally and it did NOTHING. But the suppositories are absorbed
directly into the blood and they work BRILLIANTLY. I am so grateful.
Yes they really really truly work. It may take a while but I can honestly
say they have saved my life. The reason I could not sleep was
because I always had a hyper-anxious nervous impending doom feeling and that
especially would act up right before bed. Plus the restless legs
and sometimes my whole body twitched but I got the insomnia BEFORE i got the
RLS. I can't honestly say I get good sleep every night - yesterday I
worked physically too hard and I was so exhausted that I couldn't sleep too
well, its weird. BUT I DID SLEEP AND I WAS FUNCTIONAL TODAY. And,
I still worry extensively about sleep, for instance right now I am worried about
tonight, I don't think that will ever go away. But I have had some awesome
nights of sleep, and those days are wonderful!! I do sleep EVERY
NIGHT.
The other thing I would do was I would drift off and jerk awake
after a minute or so and be awake the rest of the night. I was truly
hellish. What has helped me with that is the suppositories for one, but
also using breath easy strips (I can get 3 nights from one strip if I take the
oil off my nose). I had sleep apnea, mild I think - i also do something
very strange - I tried using chin-up strips and I am allergic to my saliva so I
got some of their rolls of tape and I put a very narrow strip under my chin up
the side of my face and that had taken care of the apnea because I can open my
mouth a little but not enough to "snort" if you know what I mean. Anyway,
hopefully thats not an issue for you.
Before these suppositories I was
like you - nothing worked not herbs or oral 5-htp or ambien, nothing - I
was at my wit's end and very near death at my own hands. I know thats a
terrible thing but its the truth, I know you understand.
Anyway,
to say Dr. Caferelli is my hero is an understatement. The
other thing he helped me with is my Restless Legs Syndrome - I know iron is not
good for you but I had to get my ferritin up and NOTHING worked, not meat or
supplements or anything. Well low and behold he has suppositories with
iron in them. Now my RLS is controlled but i have to keep my ferritin well
over 100. If I DO have a bad night I can feel my legs, but nothing like
before.
I lost all my money, my
career, everything with this, developed horrible tinnitis from lack of sleep,
TMJ, you name it but not the awful fibro pain. So I guess I have aspects
of fibro but praise be to God not the horrible pain or Chronic Fatigue. I
try so hard to be grateful for what I do have now and that is sleep, maybe not
the best sleep but nevertheless sleep....enough where I can have laughter, joy
and a life and even feel the grace of God, because when I was not
sleeping God seemed very far away.
To try out about the
suppositories call Human Performance Labs in West Palm Beach, FL, phone
561-682-1101. They are as close to a miracle as I have found so
far!"
3.
OXYGEN-STARVED BRAIN
From a
reader--
"When I first started developing symptoms
(approx. 2 years ago) I always felt like a big problem was my blood
flow, because I would feel a lot better for a little while after a
massage, or exercise. And felt like the other big problem was that I
wasn't getting enough oxygen; especially to the brain, because I wasn't
able to think as good/clearly as I use to. Anyways, a while back, (before i
was even diagnosed with FM), I was in respiratory therapy school, and was
messing around w/ a oxygen tank and decided put it on 12 lpm, and try it
just for fun. I noticed after we were done with the tanks, and lecture
resumed, that my thinking ability was much more clear (short
term) like it use to be, but didn't think much of it. Later on, when I
again used the oxygen tank on a high amount of o2, my brain
once again felt like the "fog" had been somewhat lifted, and it was
once again easier to think/concentrate. When we would practice/use our
pulse oximeters to measure (obviously the pulse) and our o2 saturation of
the blood, my o2 saturation would always be fine though. However,
I still felt like oxygen was a problem for me. Then one day I put 2 and 2
together, and came 2 the conclusion that even though my o2 saturation was
fine, the movement of my blood wasn't, thus the reason my body
wasn't circulating the o2 through out my body and brain like it should, and
in turn causing me all these problems pain/"brain fog" etc. So when I
read about a lot of FM suffers having RBC movement issues, it totally makes
sense."
4. REMOVE
MERCURY FILLINGS?
From a
reader--
"If you do not have major illness and are
functioning I strongly recommend having ALL the metal in your mouth replaced by
one of the renowned biological dentists in your area. Where do you
live? I am happy to send you a copy of our newsletter with listings of
DAMS, (dental amalgam mercury syndrome), coordinators in your area. They
can lead you to a biological dentist who can safely do filling
replacement. It is not safe to have your regular, amalgam-using dentist do
this, since they are who know nothing about how to do removals
safely. A good mercury-free dentist will know how not to expose you to
more mercury while removing it. Gold is an alloy and only 2%
gold. Gold used in dentistry is made up of many other metals.
Having dissimilar metals in the mouth sets up a battery right next to the
brain! This is dangerous. Talk to a good biological dentist about
replacing the gold in your mouth. - Joan D."
5. GARLIC
FOR COLD SORES
From a
reader--
"Just want to tell
you what I use and have found to
work for cold sores (herpes virus). I take
garlic capsules at the first sign I
am getting an outbreak. Kaolic is good
but I have found other brands too.
If I have let it go too far
and ahve an outbreak, it still helps
it to heal faster. I read about
this in Dr. Northrops book. Also can go
on line and type in herpes virus
and garlic. Also for colds, I take
echinacea right away. It works for me.
Seems better than taking Nyquil. Just some
suggestions."
6. ZYPREXA
FOR SLEEP
From a
reader--
"I haven't tried seroquel, but use another
anti psychotic called Zyprexa with great results. I've been taking it for 7
years strictly for sleep. It works wonders!!"
7. HERPES
VIRUS CAUSES CFS
Reader 1 (CFIDS book
author)--
"I was very pleased to read that finally
herpes virus causes CFIDS www.fms-help.com/virologist.htm. I
wrote this in my book, "Beyond the Dark Cloud," and also said everybody needs
their mercury removed in order to feel better. I had so many mercury
fillings. The dentist in1994 pulled almost all my teeth. I miss
my teeth, but I do not miss the mercury. It has to be a dentist who knows
what he is doing, otherwise it could be fatal. I also wrote about coffee
enemas, which really take the toxins out of your system and less headaches
then. I have been writing and writing that the the cause of CFIDS is
herpes infections. Now it is finally looked into."
Reader 2 (medical
researcher)--
"My husband has looked at the HHV-6 in
CFS. It's highly unlikely that the virus itself is the cause. It's
more likely the trigger for latent dysfunctional immune
responses. Just about everyone comes in contact with HHV-6,
however, not everyone ends up with chronic symptoms as a result. That's
when you ask why not? And what's different about those who do? The answer
to the last question is that those who do end up with chronic symptoms are ones
whose immune systems were most likely damaged in utero so that
they couldn't mount a sufficient response against HHV-6 when it enters the
system. The immune system profile of someone with CFS is one of skewed
immune responses, generally toward dysfunction in the face of external invaders,
in particular viruses and bacteria. It's far more likely that the
chronic after effects from HHV-6 challenge is the result of an immune
system that was rendered incapable of being able to mount an effective response
to viral infection long before that person was even born."
Reader 3
(friend)--
"I have HHV-6 and it was detected by blood
test my insurance considered "experimental". I think it was elevated IGg
antibodies. Still even if one could get their doc to test for this, they say in
89% of cases the person has the infection but there could be that 11% who has
the antibodies but not the infection, so due to that they don't consider the
test "proof" of it. It's too bad because it seems right now this could be the
most accurate marker of CFS. In my case for example my antibodies were 3x higher
than the "normal range" so that would seem it would be even more suspicious I'd
have it, yet still my PCP doc doesn't consider it really means much that I have
the antibodies. Fortunately the specialist I am seeing who works w/ the
virology dept. at Stanford is going to treat me for HHv6.
The treatment is hard to go through because you have whats called "die
off" which brings symptoms worse than the disease itself. So they won't
even treat me until they get my immune system functioning better as the doc said
I couldn't handle the treatment now. This HHv6 is one of four active macoplasmas
that I have. The other one is the Chlamydia pneumonia which is
probably even worse/ more serious than the HHv6. I guess bottom line here is
that all along you have been correct in asserting mycoplasmas www.fms-help.com/mycoplasma.htm as the
cause of CFS and probably FMS too."
8.
SLEEPNET.COM
http://www.sleepnet.com/ - "Since
1995 - Everything you wanted to know about sleep but were too tired to ask." -
Forums and sleep disorder info.
Reader
1--
"The seroquel idea is not so good [for
sleep]. These anti-psychotics should be left to the patients
who need them for that purpose. I have relatives on these. My daughter tried it
for sleep and it didn't work for that at all, but then you have the problem of
getting off it like so many other things that affect the brain. Have you
tried any drugs that are anti-seizure type drugs? My daughter is doing fairly
well on a combination of clonazepam, gabatril, and doxepin and melatonin. Her
doc has worked with her on low doses of combinations--one that helps her get to
sleep, one that helps her stay asleep, and the clonzapam is for her restless
legs. Of course, the real problem is that after awhile, you have to change them
up or try something new as the body habituates to them.Or you try them again
after a lowering the doses and going off them and then going back on. She
also got a new mattress--we used our tax rebate to have a local company make an
all natural latex mattress--one four inch layer of extra firm with a top layer
of 3 inch very soft latex. The top layer is not attached so that it can be taken
off and aired out. This has helped her short sleep times feel more like quality
sleep. Also her bed frame has slats so the latex can breathe. This has
eliminated feeling too hot and sweaty to sleep. Of course, she uses
her oils and her Bach essences for specific accompanying problems of the
moment. It's always a merry-go-round of trial and
error!!"
Reader
2--
"My dad was prescribed Seroquel for
sleeping. He was having hallucinations and bad
nightmares. I didn't know it was the meds until he passed
away. I had left so quickly that I forgot my sleep
meds. I saw his meds when I got to his house so I split one with my
husband. We both had bad dreams and felt like we'd been hit over the
head. Also, my friend started taking them. I didn't know about this
for a week and after telling me of her nightmares, she said the dr put her on
this. I told her that's what was causing these bad dreams. Needless,
to say, she quit them and I will never take another."
Reader
3--
"Seroquel didn't work for me. It can cause
you to gain huge amounts of weight and it greatly
increases your risk of diabetes and it is bad for your
liver."
Reader
4--
"Under no circumstances should anyone
who is not severely bipolar or schizophrenic take this drug...I know of 3 people
who took it as suggested to sleep.. all had severe adverse reactions..
the sleep was almost coma like, lasting a full 24 hours.. after that severe
panic attacks starting occuring..this happens particularly if you have any
propensity to them to start with..Please avoid this drug at alll
costs!"
10.
EMOTIONAL FREEDOM TECHNIQUE (EFT)
Reader
1--
"I have used EFT for a number of different
issues and it WORKS on everything. You need to check out
and subscribe the EFT web site. I get their weekly newsletter which
is extremely helpful as is their free download. I also found watching the
YouTube videos helpful. You can also purchase instructional DVDs from the
web site. Look up EFT - Emotional Freedom Technique - Gary Craig's
official web site. It's an amazing technique that really works. You
can also find a practitioner that can even help you over the phone. It's
that easy and that effective. I had one phone consultation thath
was amazing and cleared up one issue in a minute. I used it for teeth
clenching. After breaking 2 teeth and needing 2 extractions and one root
canal, I got a night guard. Then I used EFT and cured my teeth clenching
in a matter of minutes. I use it every now and then to reinforce it.
It's not good for pain, per se, you need to get to the emotional part of
it. That's where a practitioner comes in handy. They are trained to
do this. There is a link to practitioners on the web site. It's
really easy to learn, though, through the free tutorial download. Click here: EFT - Emotional Freedom Techniques --
Learn from the Founder Gary Craig"
Reader
2--
"Went through the tutorial. EFT
doesn't work for me. Tried it several times. Nothing."
Reader
3--
"I have studied and tried EFT. But due to the fact that I
have not been regular at it I have reservations in saying whether it does work
or not. Sometimes it really works, other times it doesn’t seem
to do much. I think the reason is I may have not hit the core issue
on times it didn't. One has to be pretty specific in targetting
the real issue, or otherwise it doesn't
work."
I recently experienced a huge boost in emotional healing and
freedom from worry, anxiety and depression from reading the book, "Healing for
Damaged Emotions" by David Seamands. I highly recommend it! I
talk about this book in "Dom's Update" (last topic in the newsletter at www.fms-help.com/071808.htm).
11. I'M
GOING TO BEAT THIS!
From a
reader--
"I laughed when you said a lot of
recently diagnosed FM suffers would come to you and say "I'm going to
beat this!!!!" but actually ended up being the one getting beat up
instead. That was me!!! I would say that all the time, go hit the
gym hard, and in turn end up bed ridden for the next few days or so
(not always, but a lot of the time). This went on for months and
months, until I found out through research, that you have to take it easy,
and not over do it. To me, it's much better to do a little everyday of the week,
then a lot 1 or 2 days out of the week."
12. LYSINE
FOR HERPES (& CFS?)
From a
reader--
"A common and very
effective treatment for most herpes viruses is taking the amino acid Lysine.
Lysine blocks the amino acid Arginine, which is required by the herpes virus to
replicate itself. I know this because my cat has a feline herpes and is on
lycene treatment. It’s very helpful to him. I looked it up on the
internet, and it turns out that human herpes viruses are often treated the same
way. It might be an inexpensive thing for CFS patients to try, seeing that this
information is now telling us such may be the
cause."
13. ANXIETY, MEMORIES & THE
AMYGDALA
From a
reader--
"I just received an information sheet from
the Pain and Stress Center www.painstresscenter.com/AboutPainStressCenter.html that
says GABA slows down messages from the amygdala--where all memories and
anxiety is stored and released. Sleep Link contains GABA,
L-theanine (to relax), 5HTP (serotonin) and other ingredients. I take
two Sleep Link pills and two L-Theanine pills. It has worked now for
several months."
14. DRY
MOUTH
From a
reader--
15. FDA
ACKNOWLEDGES FIBROMYALGIA
From Dom's message
board--
16. OXYTOCIN FOR
PAIN
From a reader--
"Oxytocin as experimental treatment for
FMS - been using for 2 months now with good results! Oxytocin is
a hormone made in the heart, but it is responsible for numerous functions in the
body. One important use for FMS is that it is a vasodilator,
which means it gets oxygen to the very smallest cells in our bodies, effecting
ATP. We all know w/ FMS we have problems metabolizing oxygen and producing
cellular energy. Another interesting thing is it has an amazing capacity to
reduce pain. In fact it is often used to treat narcotic addiction because it
fits into pain receptors just like opiods do. Additionally it effects
neurological hormone balance/functioning, so can have the benefits of reducing
depression and anxiety. Finally it is supposed to help with nitric oxide
metabolism, which more and more studies are showing to be problematic in
FMS. I found out about oxytocin through the Fibro and Fatigue Center in
Sacramento CA. They use it on most of the patients and have had great
results. The downside is for it to be most effected it has to be injected,
subcutaneously, a few times a week. So I am now giving myself shots of
it. I can tell you I am terrified of needles and would not do this unless I was
getting incredible results. I can be at 8-9 pain scale, give the shot, and 20
minutes later be nearly pain free! Plus they now have special extra sharp, thin
needles, and give you xylocaine to numb it so the shots are not painful at all
surprisingly. Here is a great link I highly
recommend that explains all the ways oxytocin is beneficial for FMS:
17. VEGAN
DIET & FIBRO
"In your
recent newsletter, someone wrote in regarding a vegan diet and being
pain free from eating that way. I would like to
e-mail this person to find out
how and what they did, I thought this might be helpful
for me."
Vegans, please respond to Kathy, especially if you are pain
free from fibro. Thanks!
18. ACID
REFLUX
From a nutritionist responding to an article in a recent newsletter
about Tagamet--
"Tagamet is different. The proton pump inhibitors
and are called this because they limit acid production and release. This can
lead to poor digestion as you said and nutrient absorption. In many cases,
fibros/CFS folks have not enough acid and then overproduce after they eat.
These pills temporarily help but in addition to fractures are also associated
with development of food allergies.
As a nutritionist, I don't believe
they are the way to go. I would recommend instead something like
bodyecologydiet.com from Donna Gates with replacing good bacteria, and she has a
protein digestion formula that contains acid. I was not able to tolerate this,
however, I have had good results with Enzymatic Therapy brand "Acid Ease" which
you take before meals and which seems to help me digest my food
better.
The three things that I have seen to work in my practice
for reflux are: stop eating 3 hrs before bed, do a food diary to see if
certain foods are a problem (one of my patients found out that without Taco Bell
food her acid reflux disappeared), and some form of probiotic. Good results from
Natrol Acidophilus Biobeads. (Enteric coated, one per day and relatively
inexpensive).
19. DOM'S
FMS/CFIDS MESSAGE BOARD ON YAHOO
My online support
group is open to all subscribed newsletter readers at http://health.groups.yahoo.com/group/dominie. Presently 350+ readers are
using the board. You can ask a question, voice a concern, vent about
FMS/CFIDS, or provide info that might be helpful for the group. To
avoid getting tons of email, sign up for either
Daily Digest (all posts sent in ONE email ONCE a day) or
choose No Mail/Web Only (just visit the site to post or
read posts as you have time). If you are not yet subscribed to my
newsletter, go to www.fms-help.com and
click on "Request Newsletter" at the top of the
page.
20. CIRRHOSIS &
FMS
From a reader--
"Cirrhosis and FMS - is there a connection????
I had read before that there is more evidence that people w/ CFS and FMS may
have much higher rates of cirrhosis and other liver problems. For one thing,
autoimmune problems can contribute to both. I am now more sure of this due
to a recent experience. I have had horrible acid reflux that
even nexium won't touch for a few years. Also I have nausea and/or stomach
pain almost 24/7 that never goes away. It's a gnawing feeling, or similar to the
morning sickness when I was pregnant. My liver enzymes have been slightly
elevated a few times but my PCP doc "wasn't concerned" because I am on meds
which could do that. The docs at the Fibro and Fatigue center in
Sacramento, CA do a major detox program on the second month of their treatment
protocol. One thing they use is a med called
"ursodial", which they say is to help with clogged bile
ducts which are common in FMS. The med is a bile salt that is
used for cirrhosis and to help dissolve gall stones. It is very safe w/
little/no side effects as it's something your body makes naturally, just in
lower amounts. Amazingly as soon as I started taking it my nausea and acid have
dissipated to almost nothing! So I think that whether or not I have
cirrhosis, I have clogged bile ducts and perhaps that contributes to my acid
reflux as well. Also I am guessing I have problems digesting fat, and perhaps
gall stones. You may know that SAMe is often prescribed
to help w/ FMS and it's also beneficial for cirrhosis as it is a liver
detoxer. So if you can't try the Ursodiol you may consider SAMe,
although you can't use it w/ anti-depressants as it is a natural
anti-depressant. I used it for years with good results. Some of you may
have heard of using a med called "questran" or "cholestramine" which is part of
one docs FMS protocol. Both these meds are liver meds that help w/ fat
metabolism and liver function. So maybe there is something to this. If you
Google "cirrhosis and fibromyalgia" or "ursodiol + fibromyalgia treatments", you
will find some interesting research on this."
21.
VITAMIN D
From a
reader--
"IN REGARDS
TO FIBRO BEING CONNECTED TO LACK OF VITAMIN D, I TEND TO DISAGREE. I HAVE
LIVED IN PHOENIX, ARIZONA since 1971 and have been diagnosed since
1996 after getting very sick suddenly. MY FIBRO JUST WORSENS EACH
YEAR."
22.
DON'T DRINK THE MILK
Reducing or
avoiding dairy consumption helped my overall health and allergies too. I
think there are too many hormones and antibiotics in processed milk that were
wreaking havoc on my fragile immune and endocrine systems. See my 100 TIps
for Coping at www.fms-help.com/tips.htm.
23.
TOXIC METALS
The Reason You Still
Feel Sick?
24.
EXERCISE DOESN'T HELP CFS
From a
reader--
"At the moment I am going to Aqua Therapy,
but it seems that by Thursday I am totally debilitated and can’t get up.
This has happened for the past 2 weeks."
Typical.
25.
LYRICA
Reader 1--
"I have so many pronounced symptoms
suddenly since the doctor increased my Lyrica dose that I didn't know
if it was coincidental or not. I have been off of the morning dose for 2
days and although I can't say the pain level is better, I am most certianly more
alert. One of my new problems: my joints in my fingers are so
swollen and pained I cannot get my wedding band on. Also, my shoulder, hip
and knee joint pain has doubled and the muscle spasms are crazy. The pain
meds I have taken aren't even touching the pain. Everything burns and
aches! I'm not quite sure what to do but since the doctors can't seem to
do more for me I'm left to search for a solution."
Reader
2--
"I saw the new Lyrica ad today and I
was mad. This one starts off with a woman saying "I used to have to
push myself every day just to perform my normal daily activities, but now w/
Lyrica I feel much better". I'm glad Lyrica is getting the word
about FMS out but how dang inaccurate! How many of us
even do "normal daily activities" like we used to? Plus we are NOT
supposed to push ourselves or we will never get better. Then to imply we just
take our Lyrica and keep pushing and we will be fine ...#$%(!ARRGH makes me
mad! I wonder if other readers have noticed it yet or anyone will write to
Lyrica."
My doc gave me 6
weeks of free Lyrica samples, but I opted not to try it based on reports I've
gotten from readers. Also, I can't afford to continue with it even if it
did help! I have been pain free since 1996 (had severe pain only during
the first 14 years of my fibro www.fms-help.com/fibro.htm) so
can't say Lyrica would be for me. (For pain relief suggestions, go to www.fms-help.com/what.htm - scroll
down about halfway and look for the RED writing.)
26.
BABESIA, FIBRO, WEIGHT LOSS & LYME DISEASE
From a
reader--
"Mepron [$1,000 per
month made me feel almost normal], which I take along with
Azithromycin. By the way Babesia is fatal if left untreated. I had a
sister-in-law who died several years ago, weighing 70 pounds, and the diagnosis
was fibro. So if anyone is losing weight and has been diagnosed with Fibro
they need to see a Lyme Disease doctor."
27.
MAN WITH FIBRO
From a
reader--
"Physically I feel like some one beats the
s*** out of me everyday, and I wake up after rigamortis has set in.
Emotionally it is just something I live with.....believe it or
not."
28. CELEBREX
From a
reader--
"I hope the
reader who is taking Celebrex [mentioned in recent newsletter] noted that
it was listed as one of Dr Mercola's '8 Drugs Doctors Will Never
Take'!"
29.
DISABILITY FOR CHRONIC INSOMNIA
From a reader on Dom's
Yahoo Message Board--
"According to brain research scientist, John Medina:
'Loss of sleep hurts attention, working memory, mood, quantitative
skills, logical reasoning, and even motor dexterity.
In his book Brain
Rules, Medina highlighted a NASA study that showed a 26-minute nap improved a
pilot's performance by 34%. Sleep on it.'
My lawyer is using my
"Chronic Insomnia" as one of my diagnosis towards my
disability.
Because of pain from my back and Fibro I am unable
to get more than 2 1/2 hours of sleep even with sleep meds.
I have taken
pills that they have told me will knock out a 400 lb man. And yet get no
sleep.
For the amount that I would need to take to work would cause
my breathing to slow and my respiration and heart would be too
labored.
Sleep meds reverse on me and wire me with anxiety and keep me
awake."
30. MOLD
EXPOSURE & TRAVEL
Today a reader and I were
discussing Dr. Ritchie Shoemaker's protocol www.chronicneurotoxins.com for
helping victims of mold exposure. This is what I replied:
"I only used CSM for about 3 months
- couldn't manage the tricky dosing scheduuule. At first I thought CSM
might be helping (mold), but then I hit some stress and went back down the
chute. I finally got better several months later (functional) when I got
back on the supplements I mention at www.fms-help.com/what.htm. My only lingering mold symptom today is inability to
travel more than about 25 miles without severe debilitating fatigue -
something happens in my brain from the jostle of
travel and the effect of flickering lights (sunshine coming through the trees as
you speed by in the car) that shuts my brain down. This did not happen to this
extent prior to extreme indoor mold exposure in 2005 (where I worked for
one year) www.fms-help.com/mold.htm. I do remember as a child
feeling an unpleasant "disorientation" from the flickering light of traveling in
a car, and as an adult I can't handle strobe lights or loud
pulsating noises without feeling like I'm about to have a seizure.
I remove myself from excessive stimulation of light and
sound."
31.
GUIDELINES FOR GETTING SSD FOR FIBROMYALGIA
Reader
1--
Ever wonder what your
chances are for getting SSD for fibro? Allsup, Inc. www.allsup.com has
helped a lot of people get SSD benefits. They have lots of good info on
their site and a FREE EVALUATION. Recently I talked to a local
attorney about getting SSD for my FMS/CFIDS limitations, but he said that here
in Florida you have to earn less than $500 per month for 6 months or not work at
all to prove that you can't work. What a Catch 22 situation! I have
to keep working (piano teacher), because my income is absolutely necessary for
our survival. There is no way you can prove to someone how hard it is to
force yourself to go to work when your body/brain is not functioning
properly. I have to take a lot of things (meds/supplements, etc.) www.fms-help.com/what.htm in order
to function and they are expensive, but absolutely necessary so I can keep
working. (A vicious circle!) Check out the Allsup site if you need
disability benefits. They do take a chunk out of your back benefits, but
it's better than no benefits if you have to go it alone unsuccessfully trying to
get SSD. More disability tips from my readers at www.fms-help.com/disability.htm.
For a list of occupations my readers had when they were afflicted with fibro,
see www.fms-help.com/occupations.htm.
It's alarming how much positive productive human energy has been lost due
to this illness. The world is the poorer for our lack of being able to
participate as we once did.
Reader 2 (on Dom's Yahoo
message board)--
"I have SSD, I
worked for a little over a year after applying. I made close
to $700 a month.
I believe SS has changed the amount you are allowed to make
up to
$900 a month.
While I was awaiting approval, and working, I could prove
that my medical
expenses took care of what I made.
I
did not win on Fibro, in fact Fibro was not the first thing listed. If
you
list Fibro first it sets off red flags. Once I got my first denial,
and
I hired a lawyer, she went back 15 years for diagnosis, during our
ifrst
meeting and wrote them all down on my appeal application.
I won not for any one diagnosis, it was the accumilation of
diagnoses that
feed off of each other.
SS has set the amount
that an attorney can collect from the back payment
once you win. Up to a
maximum. The only thing you will have to pay for is
any fees that a Dr will
charge for copies of records. Many times if you go
in person to your Dr they
will give you copies free.
The amount of pain medication and treatments
that you are on carries a lot
of weight. Chiropractic care and massage
therapy count as pain management.
It takes a little work, but you can
get all the information off of the SS
web site. Just have to dig for
it."
32. BLADDER
& GI PROBLEMS HELPED
From a
reader--
"Probiotics
help my bladder problems 100%. The doctor said I had intersitial cystitis
and I was skeptical about the prescription he wanted me to take. I started
taking digestive enzymes and probiotics for stomach and GI
problems, Coincidentally they also helped with my bladder problems. There
is research on this I have found via the internet that supports this same
finding."
33.
INFLAMMATORY BREAST CANCER
From a
reader--
34. MAGNESIUM
FOR MUSCLE SPASMS & FIBRO
From a
reader--
"http://www.bellaonline.com/articles/art54443.asp -
For quite some time now I have been using Magnesium mainly because I heard it
helped with my IBS (constipation). Interestingly enough I have noticed
much reliefe of my fibro/cf symptoms. I am hoping once the winter comes
back around I will still feel this reliefe. Not quite sure yet. I do
hope so."
Magnesium is one of my 100 Tips for Coping with Fibromyalgia at
www.fms-help.com/tips.htm. It has worked well for me for muscle stiffness and
"gelling."
35. ANY
QUESTIONS FOR DR. RITCHIE SHOEMAKER?
And from another
reader--
"Dr. Shoemaker's theories of biotoxin
illness (and treatments for same) would seem to offer
some
explanations and possibly some help for people who have been diagnosed
with
Lyme and treated abundantly with antibiotics, but still remain ill. He
raises
the possibility that people with certain genetics may not have the
ability to
get rid of biotoxins (including the ones from the corpses of dead
Lyme
critters) on their own. His toxin-binding protocol (cholestyramine)
would
theoretically apply to many forms of biotoxins, including those
from
single-celled marine critters and toxic forms of mold."
WATCH THESE VIDEO
CLIPS WITH DR. RITCHIE SHOEMAKER ABOUT BIOTOXIN ILLNESSES -
FIBROMYALGIA, CFIDS, LYME DISEASE AND MOLD TOXICITY! AWESOME!!!
http://www.biotoxin.info/webcasts
36.
HOMEOPATHICS FOR MYCOPLASMA INFECTION
From a
reader--
"WOW I was out looking for the a
place to order some vitamin c powder for the detox protocol I am
on now. I have months more of this before starting the "antibiotic therapy"
to fight the mycoplasma infections I have. I was surprised to find this site
that already has developed a homeopathic remedy specifically
to treat several strains of mycoplasma infections just for
CFS!! There is lots of great info here in the article about it - you
may want for your newsletter or to pass on to the other person you
know who has been doing the Stratton protocol. I am going to order the formula
so I'll update you of my progress after I get going on it! It is only
$15.00. They don't say anywhere how many months you have to take it,
or if you get a die off/herx effect from it but I figured it's worth a
try! I could even take it with the antibiotic protocol to help it along as
homeopathics generally don't interfere w/ other meds. Homeopathics are usually
hit or miss w/ me - I use some regularly that work great, others don't
do a thing. I sure hope this will be one that works! They have many
other products that could treat various symptoms or work in conjunction with the
mycoplasma formula to help detox also. They don't sell it directly from their
website - you have to call or email the company to order it. I'm going to ask
them some questions about the product so I'll let you know if I learn any other
info that may be useful.
Here's the direct page with the article on
mycoplasmas/CFS
Here's the home page for the company who developed the
product - you can click on their "tools" data base, then click on interactive
product database, then if you scroll through the product list to "mycoplasma" it
will list the ingredients, description, and indications for the formula. Also
you can find the product info on all their other formulas this way.
http://www.desbio.com/index.html
Thanks again for keeping all this new info moving
forward re: the mycoplasmas!"
37. MORE ON DOCS IN NORTHERN
CALIFORNIA
"Just wanted to clarify my info. on
these two doctors in Northern California. BOTH use natural products
and pharmaceuticals in treatment of patients. Dr. Powell’s
office uses vitamin support, diet adjustment, etc. from the start of their
treatment in addition to the prescribing of any medications that a patient may
need. The prevailing theory is that people with some various
chronic illnesses have a genetic predisposition ie “weak link(s)” causing their
bodies to malfunction after trauma, stress, illness,
etc. Both doctors emphatically stress that recovery from
fibro or chronic fatigue is a huge, long term commitment on the part of the
patient… I am currently in the first phase of methylation cycle
treatment and continue to experience the infamous “die off” Herxheimer
effects. However, I know that this time it is a form of “good”
illness rather than the curse of fibro/chronic fatigue continuing
unchecked. Blessings to all those who are trying to get
well!!"
38. EZORB
From
someone a reader contacted--
"I had fibromaylgia and I would say
I am 99.8% better. Cured, I don't know but I tell you I would not stop
taking my EZorb to see if it came back. The only signs I have left are
when I have a massage or use a massage chair that I can feel some trigger points
deep down inside me above my shoulder blades.
My experience with most people
who have fibromaylgia and who are not getting relief from it are:
- They refuse to follow instructions
and take the double dosage for the first three months.
- They refuse to continue taking even
the regular dosage for months---I mean even like a year before giving up on
it. (It took me 6 months or more on double dosage to feel any relief and
the relief after that was gradual with many set back days.) I finally
went down to three capsules twice a day rather than two twice a day like the
directions say and I have stayed on the three twice a day.
- They refuse to do any kind of
exercise because it hurts.
- They refuse to give up on any prescription
medications the doctors have given them. These medications (except I
don't know anything about the new lyrica as advertised on TV) are usually
anti-depressants and or some type of narcotic. I was hooked on
one--clonozapam and I kept needing more and more to release my muscles and
when it would wear off, my muscles were tighter than ever. I had to be
weaned off of it and went through horrible withdrawals like any drug
addict. it was awful and I think that this drug really aggravated the
situation and that is one of the reasons why it took me so long to get any
kind of relief from the EZorb.
So, I don't know whether there
is a cure or not, but I know these symptoms do go away in time if the above is
followed and it does take a long time. I have hundreds of customers on EZorb that buy
from me via eBay. they don't tell me what is wrong with them, but I do
know some do have fibromaylgia and they order over and over
again."
39. LUNESTA
From a reader--
"Have been taking Lunesta for too
long - after a bad experience with Ambien and still totally unable to sleep,
night after night, I gave in and began taking Lunesta. I take supplements,
do all the pre-bedtime protocols, have a good mattress and pillows but do not
sleep. I also have FMS so am in constant pain at one level or
another.
I hate taking a sleeping
pill. In addition to the FMS fatigue, I fear the pill adds to the
fatigue. Lunesta keeps me with a bad taste in my mouth. At first it
was nearly unbearable but now I kind of don't notice it. I also am having
problems with dry mouth, icky, yuck.
With Lunesta, I do get 5-6 hours
of sleep, it is broken but it's better than being awake all night."
Lunesta is one of the meds I take for sleep occasionally, but
certainly not the most effective one for me - I call Lunesta my "nap"
med. See my list at www.fms-help.com/what.htm.
40. DOM'S
UPDATE
Well, this newsletter is
getting kinda long, so I'm going to sign off with my update now.
I've been feeling very well these days. I keep up my regimen of
"helps" www.fms-help.com/what.htm and also
TRY to avoid stress - or at least I try to manage it better with meds,
supplements, prayer, faith and lifestyle changes (like saying NO to
activities that I know will overload me).
I thank God for the health
and strength He gave me this month to fill in for our vacationing pianist
at church www.fms-help.com/MBC.jpg. There
was a lot of challenging choir music, many hours of practice and rehearsals, but
I got through it, thanks to those who understood my health situation and prayed
for me. I continue to teach afternoons and evenings at the School of Music
www.fms-help.com/students.htm.
I never schedule anything for the mornings, because of my "iffy" sleep
situation!
Something funny happened last night .... an "ambien
moment" for sure! For those of you who have to take
ambien (zolpidem) for insomnia like I do, you know about the amnesia it
sometimes causes. Occasionally I have "eating amnesia" - like finding
crackers in bed with me the next morning (ha!), but nothing like the hilarious
thing I noticed this morning! I meant to paint my toenails last
night, but it was getting late, I was tired and had a big day ahead of me,
so I took my ambien and went to bed. How surprised I was
this morning to notice that my toenails were painted and looking quite
nice!! HA!!!!!
After
not sleeping for so many years www.fms-help.com/insomnia.htm, I am grateful for any meds or supplements that can help
me sleep! Years of unrelenting insomnia wrecked
my immune system and quality of life! (When you stop and
think about it, POW camps use "sleep deprivation" as a form of torture,
so you know it is BAAAAD!!!) For a list of things I've tried for sleep,
see www.fms-help.com/sleep.htm.
Have a blessed
day!
Dominie
DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE
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.
