DOM'S
NEWSLETTER
May 6,
2008
A compassionate,
informative newsletter for people with fibromyalgia (FMS), chronic fatigue &
immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis
(M.E.)
30 topics below in PURPLE.
Readers comments in
BLACK. My comments in
TEAL.
DON'T
MISS! #20 & #24
IN THIS
ISSUE:
1. READERS
WRITE
2. ULTRAM / TYLENOL
CLARIFICATION
3. GREEN TEA HAS
CAFFEINE
4.
ADRENALS
5.
FIBROMYALGIA IS A DISEASE - NOT A SYNDROME
6. NITRIC OXIDE &
FIBRO
7.
CORTISONE
8. FORCED
EXERCISE
9.
IODINE
10. DOM'S SUPPORT
GROUP
11. THYROID, ADRENALS,
DIGESTION
12. MAY 12 -
FIBROMYALGIA AWARENESS DAY
13. BROMELAIN &
GLUCOSAMINE
14. ANTIBIOTICS &
FIBRO
15. DISRUPTED CIRCADIAN
RHYTHM
16. WHY YOU HAVE TO GET UP
FOR THE BATHROOM MORE WHEN YOU CAN'T SLEEP
17.
FIBROMYALGIA TALK RADIO
18. ALTERNATIVE MEDICINE
HELPING
19. U.K.
FMS/CFIDS SITE
20.
UPPER BRAIN STEM OVER-FIRING CAUSES INSOMNIA & FIBRO
21. COLDS
22. HOT FLASHES
23. CURAMIN
24. CHIROPRACTIC
DANGER
25. SLEEP SUPPOSITORIES
26. IMMUNE POWDER
HELPING
27. DISABILITY TIPS
28. CUBA
29. POEM FROM A
READER
30. DOM'S UPDATE
1. READERS
WRITE
"Thank you for the opportunity for
communication that you offer."
"I've been searching fibro sites for a couple
of years to find any tidbit of help. I have gotten tired of reading the
same old jazz over and over, was looking for the kind of
realistic help you provide. Some books help a little but
none have been as comprehensive as your 100 points www.fms-help.com/tips.htm, especially
your pithy explanations."
"Thank you for creating your web site
www.fms-help.com. Only when you
read about others in the same boat as you, do you truly feel like
'wow--someone does understand and can relate'."
"I can't tell you how
happy I am I found out about you!! You are so full of knowledge
and inspiration! God bless you! And please keep it coming."
"Another great newsletter. I look
forward to each and every one and archive them all for
reference."
2. ULTRAM
/ TYLENOL CLARIFICATION
Reader
1--
"Was reading [ www.fms-help.com/042008.htm
] about what the person said about Ultram not having Tylenol in it. It does not
but there is Ultracet which is Ultram/Tylonol, when they first started using
Ultram. It was to hard for some to take, so they made the Ultracet, so I
think someone is right about it just has the name wrong."
Reader
2--
"In regard to Tramadol, Tramadol does not
contain Tylenol. It is marketed under the name of Ultram. Ultracet,
on the other hand, does contain Tylenol, as it is made up of Tramadol plus Tylenol. Hope this
helps!"
Reader 3--
"Regular Ultram/Tramadol does not contain
Tylenol. However, the formula known as Ultracet does contain
acetaminophen/Tylenol. At a bit higher doses, Ultram can cause some
people to experience insomnia and even sweating."
3. GREEN
TEA HAS CAFFEINE
From a
reader--
"In your last news letter at #14 about
Migraine a
reader says green tea does not contain caffeine, this
is false
and is a very common false belief.
Here is something from
Wikipedia,
'... Green teas contain two caffeine
metabolites
(caffeine-like substances): theophylline, which is
stronger
than caffeine, and theobromine, which is
slightly weaker than
caffeine.'
A Google search will also provide many sites where the
myth
of green tea not containing caffeine is debunked.
I do not know why so
many people think green tea does
not contain caffeine, and I do not know how
those
"rumors" get started but do they have a long life!
If
the reader in question gets relief from his/her
headaches by drinking lots of
green tea it is most
probably BECAUSE of the caffeine!!!
Many
migraine/headache medications contain caffeine
because (with most people)
caffeine helps.
For example Tylenol with codeine contains 15 mg
of
caffeine.
Anacin contains 32 mg of caffeine.
I just found a caffeine content comparative
table
at http://www.stashtea.com/caffeine.htma cup of green tea contains 1/4 of the caffeine in a
cup of
instant coffee.
So our reader (at Topic #14 - migraine www.fms-help.com/042008.htm ) by drinking
four cups
of green tea is getting the exact same amount of
caffeine there
is in a cup of instant coffee!
I would still recommend green tea over
coffee for many
health reasons/health benefits over coffee,
but at
1/4 the caffeine of coffee, green tea is not a
caffeine free drink at
all!"
Thanks for this correction and
clarification.
4.
ADRENALS
Lengthy but informative
comment from a reader--
"As a person who has been
dealing with severe adrenal issues for the past 6 years I can add a lot to this
discussion. I started out with AI (Adrenal Insufficiency) and ended up being
diagnosed last year with Addison’s Disease, which is when your adrenals don’t
function, or lose a majority of their function. This can be the entire adrenals;
or in my case just the part that makes cortisol/aldosterone. I still make
adrenaline and nor-adrenaline, which is made is a different section of the
adrenals. If you suspect that you have adrenal problems; DO NOT, I repeat, do
not start using any medications such as Cortef (synthetic hydrocortisone),
Natural hydrocortisone (made from a yam base), Isocort, over the counter (made
from sheep adrenals but it DOES contain hydrocortisone), or prednisone, BEFORE
you are tested.
I can share from experience, in ANY case, you MUST have a 4
part cortisol measurement. Doctors will want to test A.M. blood only, or a 24
hr. Urine cortisol, but these are not as diagnostic as a 4 part, which is
usually a saliva test, done at 7:00 a.m., noon, 5 p.m. and bedtime. We make the
majority of cortisol in our bodies before 8 a.m., however I have seen test
results where there is nothing in the morning and spikes at night. You can
easily see from the test what your body is doing on a particular day.
You DON’T need a doctor to order this test, which runs
about $120-$140. It can be ordered from
http://www.canaryclub.org. They use the
same labs as my doctor here in Houston; Diagnostechs and ZRT. And at the same
time, they offer other tests such as hormones and thyroid measurements. They are
extremely accurate, as I’ve had concurrent ones done at both labs and blood
tests at my doctors with the same results.
If you suspect you have serious Adrenal Insufficiency,
it’s prudent to see an Endocrinologist to have an ACTH Stimulation Test, which
basically is just a morning shot that stimulates the adrenals to produce
cortisol within a certain time frame, and if they don’t they can diagnose you
with Adrenal Insufficiency. BUT, you CANNOT be on any form of oral
hydrocortisone to have the test run and once you start the medication, it’s
extremely hard to wean off to take the test.
Regarding your question about adrenal supplementation. If
you take adrenal extracts, drops, herbs, etc. these do not cause the adrenals to
become “lazy”, however, there are varying degrees of success with these
therapies and they rely on the fact that the adrenals are healthy enough to
‘regenerate’, which mine were not. There are MANY people who have had good
success with them.
If you have a baseline saliva cortisol done, it’s EASY to
tell from subsequent tests whether the therapy is effective. I tried them for
nearly 4 years and spent 1000’s of dollars on ACE (Adrenal Cortex Extract),
Mil-Adregen, Licorice Root, Ashwaganda, Siberian Gensing, consultations with
homeopaths at the Clymer Healing Research Center in Pennsylvania, but my
adrenals continued to decline.
Plus, if your adrenals really ARE declining then you need to
see a doctor for a morning blood baseline measurement of ALDOSTERONE, which is
made in the adrenals and controls sodium/potassium ratios in the body. If you
are having regular CBC (complete blood panels) and notice your potassium is very
high, this can also be an indicator of declining adrenal function. Also, if you
crave salt all the time, or your skin is changing pigment, becoming darker or
yellow, this also a good diagnostic indicator.
Each person is different, however, the school of thought is
that if you take more oral hydrocortisone than the body needs, it will begin to
feedback to the adrenals and tell them to make less. Not taking more than what
you need is called a ‘physiologic dose”. For most people, this can be 15-20 mgs.
a day. But, I again stress, the ONLY way to tell is to monitor this with saliva
or blood tests. If you see morning baseline cortisol measurements declining, you
know for certain the adrenals are responding and making LESS.
Once you are totally dependant on hydrocortisone, then you
are “technically” an Addison’s patients and being on complete hydrocortisone
therapy is a slippery slope. In my case, I have to have syringes of Solu-Cortef
(which is a liquid form) for emergencies, because in the event, say, of a car
accident, or even vomiting the body cannot make the cortisol it needs and must
have it some way if it cannot be ingested.
That being said; many people with Chronic Fatigue and
Fibromyalgia find they greatly improve when their adrenals are addressed AND
they find out whether their thyroid is working. There is an interesting web
site:
http://www.drrind.com that is pretty
accurate in it’s instructions on body temperature testing to help diagnose
adrenal/thyroid issues. But in short, if body temperatures are low and erratic,
it usually indicates adrenal, if low and stable - thyroid. If your temps are
really low, less than 97, it’s pretty certain you have some kind of hormonal
issue.
IF you suspect you have adrenal problems AND thyroid
problems concurrently, the adrenal problems have to be addressed before thyroid
because you can run the risk of overstressing the adrenals. This happened to me
and I became extremely ill when we tried to introduce first Armour Thyroid, then
Synthroid. This is mentioned in the ‘contraindications’ section of both meds as
well as in the Physician’s Desk Reference.
Have your TSH, FREE T4 and FREE T3 and a thyroid antibody
panel done at your doctor’s office or again order it from
http://www.canaryclub.org. It’s a blood
spot test where you just prick your finger and deposit the blood drops on a
special card,
The thyroid panels are more expensive than the cortisol
panels, but for people whose doctors are uninformed or non-responsive it’s worth
every penny. I again can’t stress enough, the FREE’s are the best indicator of
true thyroid function, as Free T4 is the ‘storage’ hormone in the body and it
converts to Free T3, which is the ‘active/energy’ portion. In my case My TSH is
1.4 (Excellent), Free T4 mid-range (OK), but I’m WAY below range on T3, which is
why I have been having debilitating fatigue. Had my doc not tested this, we
would not have known that I was not converting the storage to the active
hormone. MOST doctor will not test the FREE’s without you badgering and
insisting on it.
Here is a quote from an article on T3 from the National
Institutes of Health--
'Decreased T3 function exerts widespread effects throughout
the body. It can decrease serotonin and growth hormone levels and increase the
number of adrenal hormone receptor sites. These effects may explain some of the
symptoms observed in WTS (This is something called Wilson’s Syndrome). The
dysregulation of neuroendocrine function may begin to explain such symptoms as
alpha intrusion into slow wave sleep, decrease in blood flow to the brain,
alterations in carbohydrate metabolism, fatigue, myalgia and arthralgia,
depression and cognitive dysfunction.'
Don’t these symptoms sound familiar???? This is now the
first time in 5 years I stand a chance at some real progress as we recently
found an oral hydrocortisone I can tolerate and will begin T3 replacement
therapy in the next few weeks. Sorry this post is so long….but I have
spent the last 5 years researching, studying, praying to understand the whole
adrenal/thyroid component of this illness."
Comment from a reader about
adrenals--
"You had asked
www.fms-help.com/042008.htm
if anyone has a thought on whether Adrenal supplement weaken your own
adrenals. From all I have read, specially Standard
Process website (a company respected by chiropractors and has been around for
decades here in Wisconsin) and also Wilson's book on adrenal, the answer
seems to be that the long term use of actual adrenal glandular could
do that, but the salts (minerals) made with complexing these adrenal
components with mineral salts , a special process, does not cause such a
problem since it only provides food and mineral to your own adrenal
gland. Also, a point to keep in mind , too much adrenaline in the
blood equates with increased muscular pain since adrenaline tends to contract
muscles, leading to pain."
5.
FIBROMYALGIA IS A DISEASE - NOT A SYNDROME
From North Texas
Fibromyalgia Support and Meetup Group - http://fibromyalgia.meetup.com/285--
"We had Dr.
Kenneth Kippels speak, and he said that there are evidences that prove that
Fibromyalgia changes multiple systems within the body and therefore
is definitely a disease. They can prove by certain changes within the
blood, changes within the brain tissue and destruction of or changes to the
adrenal glands, thyroid and pituitary that yes, Fibromyalgia is not a Syndrome,
it is definitely, a disease!"
6. NITRIC
OXIDE & FIBRO
From a
reader--
"I keep stumbling on something I never heard of before.
This is the third time in two days. It has to do with Nitric Oxide
http://molecular.biosciences.wsu.edu/Faculty/pall/pall_main.htm -
The fifth principle is the most important one for the sufferers of these
illnesses and for the dedicated physicians and other health care providers who
are trying to effectively treat them. We need to lower
the NO/ONOO- cycle biochemistry for effective treatment; treating symptoms will
never be very effective because symptomatic treatment does not get at the basic
cause of illness."
7.
CORTISONE
From a
reader--
"I think one of your readers [ www.fms-help.com/042008.htm ] may
have been thinking of supplementing with cortisone to the point that the body no
longer produces its own supply adequately. For adrenal support I have
been taking Dr. Teitelbaum’s Adrenal Stress End formula for less than a week,
and I already have a tremendously improved amount of energy and
focus. Along with 5 mcg of Cytomel, I have been a new woman with
much less pain and fatigue."
8. FORCED
EXERCISE
From a
reader--
"I found the article on forced exercise very
interesting [see www.fms-help.com/041508.htm, topic
#10 ]. I fell on the ice over a year ago and spent months in therapy on my
shoulder. When they tried to force my arm in an upward backward
position--it virtually went into trauma. When they gently moved it slowly,
it would gradually relax. Anyway, I learned a long time ago to pace myself
to maximize my energy level."
9.
IODINE
From a
reader--
"The Iodine article [ www.fms-help.com/042008.htm ] was
interesting. . . my blood test shows thyroid deficiency even
though I am on prescription. The naturopath has now put me on some
kelp. She recommended Iodol in the beginning, but I have been allergic to
the iodine solution injection you take when you have xrays. Maybe the
natural (?) Iodol would be a good idea."
10. DOM'S
SUPPORT GROUP
260+
newsletter readers have joined the message board at
http://health.groups.yahoo.com/group/dominie. I suggest signing up for the NO EMAIL / WEB ONLY
option. Otherwise you will get tons of email. You can check
the message board online when you have time and also search by
topic.
11.
THYROID, ADRENALS, DIGESTION
From a
reader--
"I decided
to take the plunge and go wholeheartedly into the naturopathic world last
June. As you know, it (appointments and pills) is very expensive.
The original diagnosis showed that my adrenals were not functioning; since they
are the administrator of the body systems, all my minerals were ending up stuck
in my kidneys--thus, osteoporosis. It appeared that everything else in my
body was not at functional capacity as well. When my reports came back
(urine/saliva) after the beginning of this year, they didn't seem to show
much improvement. Neither did I feel better. Last month, I was ready
to ask for a maintenance program and felt discouraged. However, when
my blood test from last year was compared with this year, there was improvement
in all my body systems except thyroid. The main culprits appear to be
thyroid, adrenal, and digestion. I am using extra natural adrenal
supplementation for stressful times. I am also using (my own choice)
balanced amino acid complex and a natural sleep combo. As you know, it is
a continual process of learning what helps and what doesn't."
12.
MAY 12 - FIBROMYALGIA AWARENESS DAY
Does anyone know
of events to participate in or letter writing campaigns this year? I'm
pooped out. Write me at dombush@bellsouth.net. Our last big "hurrah" was the Million Letter Campaign in
2005 www.fms-help.com/letter.htm. Sadly, I'm not sure it did much good, although many
thousands of letters were mailed to media. Maybe the most effective way is
to just try to educate those around us - friends, family, neighbors, co-workers
(assuming you can still work), doctors, clergy, and
lawyers.
13.
BROMELAIN & GLUCOSAMINE
From a
reader--
"The supplements I am
using are Bromelain and glucosamine cream with msm. The Bromelain is (pineapple
enzymes), it reduces inflamation,boosts the immune system, help with digestion,
helps with depression.The glucosamine cream with msm is a a topical cream you
apply on site of pain, it is used also for arthritis. The Bromelain is to
be taken 3 times a day to treat fibromyalgia symptoms and the cream can be
used as needed.These are the two supplements that made a big difference in my
life and by spreading the news i am hoping to help others. By
the way bromelain is not to be used with any blood-thinning
medication,tetracycline and aspirin, because of the increased risk of
interaction. Hope you find the information useful."
14. ANTIBIOTICS
& FIBRO
From the message
board--
"Someone mentioned that antibiotics helped
get rid of their FM symptoms. (I
assume temporarily.) That is possibly
related to Dr. Pimentel's work. He
noticed that most people with FM had an
overgrowth of bacteria in their
small intestine. More bacteria corresponded
to more pain. He used
antibiotics to bring the bacteria numbers down, and
then medication to
improve the body's mechanical removal of the excess
bacteria. I think
presently, he may have added a supplement of bile to the
treatment protocol,
to help keep the bacteria numbers down.
If the
excess bacteria in the small intestine is of the type that creates
lactic
acid (usually it is), then this could be one of the sources of excess
acid in
the body. The excess acid interferes with the energy of the
cells --- they
can't take in oxygen properly. So you fatigue easily and your
muscles hurt.
The excess bacteria also interfere with the absorption of B12.
They also
break down conjugated toxins that the liver has dumped in the
intestines,
making the liver's job a whole lot harder, as the toxins can now
be
reabsorbed.
By the way, you need adequate T3 thyroid for the proper
mechanical removal
of the excess intestinal bacteria. I think that is one of
the reasons that
Dr. John Lowe's use of a lot of T3 is helpful."
15.
DISRUPTED CIRCADIAN RHYTHM
16. WHY
YOU HAVE TO GET UP FOR THE BATHROOM MORE WHEN YOU CAN'T
SLEEP
Sleep deprivation was found to change the
body’s blood flow, leading to:
-
More frequent bathroom breaks in the
middle of the night
-
A reduced fall in nighttime blood
pressure
-
Higher salt content in the
urine
-
17. FIBROMYALGIA TALK RADIO
From a
reader--
"Live on www.blogtalkradio.com/fibromyalgia
- Join Lynne Matallana, president and foounder of the National Fibromyalgia
Association, as she discusses National Fibromyalgia Awareness Day and the NFA's
"Caring by Sharing" campaign. Friday, April 25, 2008 from 10:00 am -
11:00 am Pacific Time, 1 pm EST HOW TO PARTICIPATE:
Listen live at www.blogtalkradio.com/fibromyalgia
or Call in to listen live at (646) 915-9615."
18. ALTERNATIVE
MEDICINE HELPING
From a
reader--
It was magnified 400 times and he
saw that it had yeast and that it multiplied even more in 6 hrs.
I have been so far 3 and a half
weeks on the water cure, billions of probiotics, flaxseed, omega
and
borage oils. Calcium,
magnesium in a solution, a non dairy, non sugar,non gluten diet, B-12
injections.
It has been so far with very
positive results. I feel great and to think that felt that i was dying and
writing a will.
If anyone is interested in
seeing this doctor. They will have to come down to the Rio grande
Valley.
He comes to Brownsville, texas a
few times a month. The rest of the time he is in Austin Texas.
He treats Autism , and has had very
good results. By the way , there are people out there already
driving their cars who had
Alzhiemers. Great results with that too.
Of course, thank the Lord above all
!!!!"
19. U.K. FMS/CFIDS SITE
General
information.
20. UPPER BRAIN STEM
OVER-FIRING CAUSES INSOMNIA & FIBRO
This site has a short explanation of
what causes fibromyalgia (brain stem malfunctioning) and a very interesting
video by chiropractic neurologist, Dr. Michael Johnson.
He says that fibromyalgia pain, insomnia, fibro-fog, IBS, dizziness, light
sensitivity, heart palps, etc. are all caused by over-firing of the upper brain
stem.
Dr. Johnson says most fibromyalgia patients
have had severe stress - physical, emotional, or sexual abuse. He
gives oxygen to fibro patients for their cerebellum
to get more oxygen. This helps most of them! He also uses auricular
therapy (acupuncture without needles called stimflex on the ear, which slows down the upper brain stem). He
also uses auditory stimulation, visual stimulation, olfactory stimulation (sense
of smell), and says eye exercises helps fire the
lower brain stem (which explains why rolling my eyes upwards repeatedly when I'm
trying to go to sleep helps relax me - and most of us focus our eyes straight
ahead 99% of the time because of wearing glasses, watching TV, being on the
computer or reading).
He also uses warm water in the ear which stimulates the
semi-circular canals. He says that exercise of the
arms helps this brain misfiring problem more than exercise of the legs,
because arm exercises help a different area of the brain (which explains
why just a few minutes of lifting my 3-lb. weights relaxes me and helps me yawn
and get sleepy at night when I feel tense). He recommends
L-tryptophan from Montef (pharmaceutical grade) which helps build up serotonin,
also Omega 3's (natural anti-inflammatory), and adrenal support (from
Metagenics). Dr. Johnson says you need HIGH QUALITY nutritional
supplementation (not Walmart).
Dr. Johnson thinks that Trazadone is
the best med for fibro patients for sleep, but on that I differ! (You can
read what Trazadone did to me at www.fms-help.com/sleep.htm.) After I watched this video, I understood why
certain things I am using now are helping (e.g., a supplement that takes
oxygen to the brain, certain essential oils by inhaling the smells, audio
tapes to balance the brain, etc. - my complete list is at www.fms-help.com/what.htm).
I think this doc is right on about the whole fibro
dilemma! I would love to get some feedback from readers. I am
especially interested in his treatment of insomnia, which I have suffered from
since I was 16 www.fms-help.com/insomnia.htm. I am now 56. I have to take 3 different meds to
sleep most nights, but I am not complaining - because I found that going
without sleep was worse!!! You just can't function without
sleep!
Has anyone been to Dr. Michael Johnson? He is located
in Wisconsin. There are also other chiropractic
neurologists around the country who use his techniques. Please
write dombush@bellsouth.net with any info. Thanks for any
feedback!
Below
are responses I received from readers who viewed the same
information about Dr. Michael Johnson (referenced above):
Reader
1--
"Thank you so
much for this. It has given me so much hope. It makes perfect
sense. When I was first diagnosed I went to a health food store here
called Sun Harvest. I got a little booklet on Fibro and it mentioned much of
what he mentioned and suggested L-Tryptophan and the others. I took them when I
was working and could afford them. Now I can’t afford any of it until my
disability comes through. I no longer have health insurance and I am 59 so even
with disability I wouldn’t get Medicare until I am at least 61. You have to wait
2 years after your case is approved. I am going to figure a way to get this
book. The other thing is it explains why the bio-identical hormones I was taking
helped so much. As an RN this made so much
sense, I just cried as I watched it."
Reader
2--
"Interesting you sent me
this as I just found this site a few months back and also felt it very
accurate. They have a place on their site where you can try to find a
local doc who does the protocol. The closest doc to me was 3 hours away, and he
did a free consultation. I went in and had the neurological testing and indeed I
had all the things this website talks about. I desperately wanted to do his
protocol but he said I'd have to come in 2x/week for the first month, then
1x/week. He said the drive alone (6 hrs round trip) would cause so much stress
and fatigue it would undo the benefits he could give me. However I continue to
search for a doc closer to me. I highly recommend if any of your readers
can find a doc who does this to give it a try!!!
That said, I found a doc who does part of this protocol, along w/
Dr. Tietelbaum's, Dr. Bennetts, and Dr. Lowes (T3 thyroid therapy).
He works heavily on the CFS stuff - viral/, mycoplasma
and Chlamydia pneumoniae, Herpes Viruses, EBV,
etc. He does labs for a long list of viral, bacterial, and
fungal infections as well as testing all metabolic functions. After 1
week I'm already seeing results. He uses hormones, supplements, vitamins,
and medications in his protocol. The thing that is helping me most right
now is I'm injecting oxytocin into my leg once a week. It's the
hormone women make when pregnant/nursing and it's responsible for a large range
of metabolic functions - I'll put a link on that below. I'm also
taking injectable magnesium and B-12 plus vitamin D3 and a few other
things. Vitamin D3 is a big part of his protocol. He lists his protocol on
his website plus has a list of the top research articles for the last
15 years for FMS/CFS - (would be a great handout to give a doctor who doesn't
know much about it). He believes that we are genetically
predisposed to it, then PTSD, an accident or trauma sets it off causing
neurological malfunction, HPA Axis to stop functioning properly, and a weak
digestive and immune system. He treats the sources of all those
problems. Once all those problems develop he says our metabolism
slows down to a similar state of an animal in hibernation state and we can
no longer produce energy. He brings patients out of the hibernation state w/
hormonal and nutritional supplementation, then works on building the immune
system, fighting off the molds, viruses, etc, He is in Sacramento CA but
there are other docs around the country who use a similar protocol - you could
probably find on his website or email him. Here is his site - I recommend
you go through all of it as there are some great resources.
Here is his site (Dr. Powell):
Article on oxytocin: (you have to scroll down past the
adds)
Reader
3--
"What Dr. Michael Johnson has to say about the firing of
the upper brain stem is highly interesting. There is a strong
serotonergic pathway between the brainstem and the hypothalamus. Plus in
fibromyalgia, the hypothalamus is reacting as if it is under the influence
of too much serotonin. His recommendation to take tryptophan therefore
seems incongruous. Too much tryptophan or serotonin can keep you awake. Too much
serotonin is harmful, and can make fibromyalgia worse, as in that recent post
about a person having been diagnosed with fibromyalgia but who actually had the
serotonin syndrome. The symptoms are similar. One must be very careful about how
much tryptophan or 5-HTP that they consume."
Reader 4--
"My first Feldenkrais therapist gave me a number of eye
exercises to break the neurological patterns and relieve
pain.
things like
1. turning head slowly left back to center
taking your eyes with you 5
times .... then right back to
center, taking the eyes with the head 5
times
2. repeating it
all but leaving the eyes focused straight ahead while
turning the head
3.
turning again but having the eyes moving counter to the
movement."
Wow! This is so
interesting! I read a long time ago that some therapists are using
something like blinking light therapy to help people get past emotional
trauma. It causes the patient's eyes to go back and forth rapidly and
repeatedly. Interestingly, I know an older woman who suffered much trauma
as a child. I noticed that when she is under stress, her eyes move rapidly
back and forth so fast that it seems almost humanly impossible!
Maybe this is her subconscious way of relieving neurological and
psychological stress....the brain and eyes are connected. Also see Dr.
Johnson's other site www.lifechangingcare.com.
I also got this comment from a
doc who knows Dr. Johnson--
"Dr. Johnson has been a huge influence on my life and on my patients' lives. There are not too many
people like him. He is brilliant and he cares."
Also, I found out
that Dr. Johnson addresses this issue of neck manipulation in Chapter 10 of his
book, referenced above.
21.
COLDS
From a
reader--
"I would however like
to recommend this for colds: Cold Calm, homeopathy from Boiron. Very cheap
but excellent for me for any sniffling/cold or cough. Also their stomach
upset medicine is great. And their cough medicine with honey combined with the
Cold Calm stops my coughs which for the longest time would not let me sleep. I
was thinking this may help you so you wouldn't have to take the generic nyquil
which I imagine has chemicals."
22. HOT
FLASHES
From a
reader--
"Hot flashes: what I have found is
to stop the sugar, and use flax seed oil (this has helped my friends who
have not been helped by other things), and if you have never tried Kefir it is
wonderful stuff. I mix in a little honey along with the ground flax and my
health has been so much better. That remifemin stuff helps a lot of folks
but some folks tell me it doesn't
work."
23.
CURAMIN
From a
reader--
"I
wanted to tell you about Curamin. I stumbled upon this in an article in
the magazine given out at our Naturally Yours grocery store here. Curamin
is a natural supplement for inflammation and
pain."
24.
CHIROPRACTIC DANGER
From a
reader--
"Some perfectly healthy people are
dying of strokes after neck manipulation."
Watch video at
http://www.neck911usa.com/vide.htm -
this is cause for alarm! I have a wonderful chiropractor for the past 15
years - he is the only one who can "fix" my upper back and neck problems when
they occur. I only see him about 3 times a year. I have had
chiropractors in the past who were very rough and I did not continue with
them. However, having just heard back from Dr. Michael Johnson (#20
above), he says he addresses this issue in Chapter 10 of his book (mentioned at
#20 above).
25. SLEEP
SUPPOSITORIES
From a
reader--
"I finally got relief using
suppositories with 5-htm and tryptophan from a chiroproactor in S. FLorida - he
saved my life. I control the restless legs with iron. But its sure
not perfect - however, I am so grateful when I get sleep as I didn't used
to at all. About my 'cure' - the reason the 5-htp now works is
because it is in suppository form - it's amazing because it did nothing for me
orally. My Doctor has literally saved my life - I don't think I
can emphasize that enough. You might want to give his suppositories a try
- I think it would get you off all sleepp meds - they work with no side effects -
must make you very relaxed - I take my suppository around 10pm go to bed aroung
11:30 or midnight. Still don't have normal sleep patterns but I sleep - I
would have been dead by now if I didn't find Dr. Cafarelli. Spent all or
our money, ruined my career the whole nine yards - I don't have to tell
you."
26. IMMUNE POWDER
HELPING
From a
reader--
"I can't begin to thank you enough
for the immune [powder]. I didn't get back in touch because I wanted to be
sure. But from mental clarity to emotional
stability to glands going down to more
physical stamina. I couldn't believe it. I am only taking
it in the morning."
27. DISABILITY
TIPS
From a reader who just got
SSD--
"To let you know so that you can pass it along to others trying to
get their Social Security. Talk with your attny. Make
sure what your states guidelines are for filing. Also get as much
medical evidence as you can. Make sure that your doctors keep good records
and if they say that you can only sit for an hour a day make sure that its in
their records. If they say that you must have more than normal
breaks during your job make sure that its in their reports also. Any thing
and everything that would help you make sure that its in the doctors
records. You have a right to your primary care and all other doctors
records. You can get them at any time by asking for them from the doctors
office. If there is something in there that either your doctor hasnt
told you about or that you dont agree with then make sure that you speak with
your doctor about it. Just make sure that there is nothing in those
records that will come back and bite you in the butt. You
keep track of all that was said to you from your doctor and then
if its not in his report then ask why. Its your life and if you cant work
any longer then make sure that you have everything right at hand to prove that
you cant work."
28.
CUBA
"My husband was diagnosed with
severe fibro, severe chronic fatigue, severe insomnia, ... two years
ago. He was in a near fatal car accident in 2001 while doing missionary
work in Kenya. He suffered multiple serious injuries, including a
concussion which resulted in no recollection of the accident. The reason
why I am writing to you, is that my husband has been to
Cuba four times since his diagnosis. Each time he goes,
he is pain free, and his sleep quality improves dramatically. The benefits
of the trip usually last upon his return to Canada, for as long
as he has been away (if he goes away for two weeks, he is able to function
once he returns for two weeks). It is quite remarkable on the one
hand, and very sad on the other. It reminds me of the movie
'Awakenings.' It is heart rending to watch him slowly deteriorate to
the point where he is no longer able to function. I know that
Americans are not permitted to travel to Cuba, but I was wondering if there
are any other fibromites that have experienced the same thing? Some people
think his problems are psychological in nature, and that the benefits that
he experiences there are all in his head. Would you mind to pose the
question to others on our behalf? - Susan"
I have 2 thoughts: First, climate - or even more sunlight
- may be the main factor. >Secondly, perhaps there is less electromagnetic activity in Cuba
(less computers, cell phones, electrical lines,
etc.)
More from
Susan--
"We chose Cuba
because it is so inexpensive to travel there. We always manage
to get a last minute flight and a great deal. This last time, my husband
was able to travel for $1005, for two weeks - all inclusive: flight, taxes,
hotel, and meals. He has someone help him at the airport with a wheel
chair, and then is able to tolerate a short bus ride to the resort.
Within hours he feels like a new man. It is
remarkable.
I was intrigued by your thoughts on the electromagnetic
activity. You may be right. Cuba has very little industry,
they do not use pesticides, and most people do not own a computer or
microwave."
29. POEM FROM A
READER
"WHAT IS MY
FUTURE?"
by Susan B. Harvey suswiland@yahoo.com
"What is my future?
Today I’m feeling pain and torture.
Where do I go where do I belong?
All I want is to live and be strong.
How do I cope with this uncertainty?
This daily pain makes me struggle to find
clarity.
I’m pulled in directions like the angry sea.
All I know is I want to be ME!
Two dreaded diseases are slowly taking my
life away.
“You will just have to live with it,” the
Doctors say.
I’m always in turbulence each day feeling
old.
Osteoarthritis and Fibromyalgia have taken
their toll.
I try acting like nothing is wrong.
All I want is to dance and sing my own song.
I’m crying inside hiding my pain.
Everyday my body is in a strain.
The pain is not all in my head, it’s real,
real as can be.
I try to ignore by counting, breathing, and
praying to Thee.
I’m really glad when the pain pills kick-in
for me.
Some days I need one, two, or even three.
People look at me and say “why are you
looking so mean?”
I say with a smile “the pain today is
extreme!”
Yes, my hair is in place, with my makeup a
glow.
If they only knew, how much I don’t want the
pain to show.
My Primary Physician NOW, knows what to
prescribe.
My Medical Insurance has the power to over
rule and deny.
How can my insurance do this to me?
All I want is good sleep and to be pain free.
I’m trying to stay positive and do what the
EXPERTS say.
I agree to try anything to brighten my day.
I’ve tried Yoga, walking, and massage to
mention a few.
Special diets I’ve tried but other
complications start to brew.
These dreaded diseases cause stress as a
wife.
I really want my husband and me, to have a
passionate life.
The love is there in my heart, that’s for
sure.
Why does it have to be so difficult to
endure.
My mind is sharp as can be.
I’m constantly proving myself to me.
Some say I procrastinate, that’s not true.
The pain makes me stop instantly, what I’m
about to do.
Have patience with me everyone please.
This is not a joke, I’m not trying to tease.
I can’t keep up like I wish I could.
My body will not cooperate as it
should."
30. DOM'S UPDATE
Busy, busy, busy!!! I'm feeling well these days, thank
God!!! Playing the piano/organ at a new church, filling in for
musicians who have health problems. It is very challenging, and I have to
practice a LOT, but I am very happy there! Also, my stepson is
getting married Saturday, then the following Saturday is our School of Music
Spring Recital. Yipes! So I have to keep after my health VERY
diligently now! Any little thing that pops up, I have to fix right
away because I can't afford to go into a disabling slump again!
A list of things I am using to keep me going is at www.fms-help.com/what.htm.
Stress is my worst enemy, so I avoid it as much as
possible. When I can't avoid it, I am learning to pray and depend on the
Lord more - He is strong when I am weak, which is often. I hope one day
scientists will figure out what is wrong with our brain stems (see Topic 21
above) - then I won't need to write a newsletter, because the docs will
know how to fix us.....what a wonderful day that will
be!
Dominie
II Corinthians
1: 4 - "[God] 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.
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