Dominie's Newsletter
November 6, 2006
 
 
Below are 10 topics of interest to people with fibromyalgia, chronic fatigue syndrome or M.E.  Scroll down to see if any are relevant to your life with fibro! - Dominie
 
 
1. SEROQUEL (revisited)
 
Reader #1--
 
"I used to take 25 mg Seroquel for sleep.  but sometimes it worked and sometimes it did not, and I could not take a higher dose as it made me so jumpy and nervous."
 
Reader #2--
 
"I use seroquel for sleep, and it works great!  It takes a couple of days to get over sleeping all day and being severely groggy, but the first night I took it I  had the first full nights sleep in YEARS. And I can go to bed and fall asleep the first time!  This stuff is marvelous.  My psychiatrist prescribed it, and he told me to play with my dosage until I found one that worked for me.  I generally cut my 200 mg tablets in half or in quarters.  Seroquel is an antipsychotic drug, so some doctors will not prescribe it, however, any psychiatrist probably will."
 
Reader #3--
 
"I tried Seroquel with no success. It also puts a person at risk for diabetes and weight gain. I'd be careful with this anti-psychotic drug. For some it seems to work wonders with sleep issues. With me Klonopin has been the best along with prayer and natural supplements (amino acids, st. john's wart, vits., glandulars, etc...)  Seroquel made my brain feel really bad--but I tend not to do well on anything psychotropic except benzopines. I'm weird."

 
 
2. MARSHALL PROTOCOL
 
From a reader--
 
"I just wanted to share some information from a friend of mine who was just diagnosed with FMS .  Her doctor, who also suffers from the disease, has done a research and believes that the cause of these illnesses is from intercellular bacteria.  The treatmeant is called Marshall Protocol with the use of antibiotics and it takes 3 years to be cured.  For more info go to http://www.drshlifer.com/." [The Marshall Protocol is a link at the bottom of this page.]
 
 
3.  CYMBALTA (revisited)
 
From a reader--
 
"I tried Cymbalta and it made me a wreck.  I seem to not be able to take many meds and not in very high doses."
 
 
 
4.  CHIARI MALFORMATION SURGERY - QUESTION
 
From a reader--
 
"I am writing to ask you a favour, I have had an MRI and have Cerebellar Tonsils or Chiari Malformation the same as my sister, we were wondering if any of your readers could contact me with regards to having had the operation and what were there symptoms before and after the operation, we are just doing some research and on telling you my story you sent me some information before, but it would be good if we could get in touch with some of these people, my email address is franwaz@ozemail.com.au  as I have been told I had fibromyalgia syndrome for the past 7years and now, this is quite weird that no one came up with it before."  
 
[FROM DOMINIE:  Chiari Malformation is an anomaly at the base of the brain.  Please write Fran directly at franwaz@ozemail.com.au, if you have had this surgery, supposedly for FMS relief.]
 
 

 
5. FIBRO & FATIGUE CENTER (revisited)
 
From a reader--
 
"I wanted to put in my two cents regarding the Fibro and Fatigue
Centers. I took my daughter there and she was helped, and we also met many
people who are feeling better. My experience was that they do not say they are
curing anyone. They simply are giving some options for treatment of symptoms
that are not usually available at a regular doctor's office. Yes, they are very
expensive and not covered by insurance. But many of the blood tests were
covered, even by Medicare, and the doctors are better able to interpret the
results than doctors who do not know about CFS and Fibro. Having a doctor who
knows about these syndromes is a relief. There were two things specifically
that were of great value. One was that we were able to get a bicycle
ergonometry test done to establish the level of disability. The test was done
at the center, but done by another provider. All the arrangements were done
through the center. Also, the blood work established several treatments that
helped, particularly the shots of growth hormone. The center doctor sent all
pertinent information to our Medicare Part D carrier and the growth hormone
prescription was approved without hassle on our parts. The Medicare Part D
carrier is covering these shots at a cost of $3 per month rather than the $300
it would cost without insurance coverage. After two days on the shots, my
daughter could tell a distinct difference in her brain fog. She said she felt
like she could think for the first time in years. I believe the fact that the
center has all their research, test results, and protocols "in order" is the
reason we were able to get this treatment without any delay or fight. Results
of treatment at the centers depend on the individual. I met many people who
have been able to return to work, even though my daughter has not been able to.
 A lot depends on your level of disability, individual factors, and whether you
have the money and desire to do everything recommended."


6.  VEGETARIAN
 
From a reader--
 
"I became a vegetarian 20 years ago after attending a workshop on animal welfare.  I had been involved for several years and was eating only free-range meat.  Everything I read made me sick, but it wasn't until I saw videos of what the animals endure in the fur industry, factory farming, cosmetic testing, etc. did it really hit me hard.  It has been 20 years and I can still see those video images as clearly as I did then.  I walked out of that workshop, got in the car, and told my husband I would never eat another piece of meat, use another product that had been tested on animals, or use, eat, or wear anything that involved animals.  And I haven't.
 
Back in those days, it was hard to be a vegetarian because the only foods out there were beans or something called TVP (textured vegetable protein).  None of the fast food or regular restaurants served any kind of vegetarian fare.  I admit it was really hard.  These days it is easy because places now serve vegetarian food (Burger King, for example, has a vegetarian burger), plus the freezer section of the grocery stores (even places like Food Lion) are filled with fake meat products.  Morningstar Farms has fake hot dogs, corn dogs, steak, chicken breasts, chicken nuggets, hamburger (like to cook with), sausage...the list goes on and on.  And it tastes so close to the real thing, you don't feel like you're missing anything.
 
Although I first became a vegetarian for ethical reasons, I later learned it is better for the planet and for my health as well.  Meats are full of hormones, antibiotics, etc.  The reason mad cow disease became an issue was farmers were feeding cows feed that contained rotting cow parts not suitable for human consumption and cannibalism is one cause of the prion type diseases, like mad cow.  The cows were eating their own kind...they weren't given a choice. 
 
One big reason little girls and boys develop sooner than they did in my day is they are eating hormones every time they eat meat.  One reason there are super bugs is due to the secondary consumption of antibiotics when people eat meat (it's also caused by the overuse and abuse of antibiotics directly).
 
The amount of land, water, and resources that goes into making one pound of meat could make hundreds and hundreds of pounds of grain or soy products.  And the grain or soy products doesn't produce the amount of waste and pollution meat production does. 
 
I am so glad they have come out with so many alternative meat products because one can only eat so many beans!  ; - )   I honestly do not feel like I am being at all deprived. 
 
If you went straight from being a meat eater to being a vegan, I can definitely understand why you couldn't do it.  That's too big of a leap for anyone, even me.  I would never recommend anyone do that all at once.  I would start with stopping meat for a few years, then little by little, replace eggs, milk, etc. with alternative products. 
 
We do still use eggs as long as they come from my friend who raises chickens as pets, not for the soup pot.  I know her chickens will never be killed, even when they quit producing.  They get a good, healthy, natural diet and they have the run of the yard.  They aren't kept in tiny cages in a dark, smelly room with their beaks cut off (they do this because being in that small of a space creates so much stress among the birds that they tend to peck each other.  Rather than giving them more space, they cut off their beaks.)
 
In 20 years, I have not faltered once.  I think if I tried to eat a piece of meat, I would throw up just because my body is no longer used to digesting meat, not to mention the emotional response. 
 
I remember seeing an animal welfare poster that showed a dog, a cat, a cow, and a pig and it said "Which do you pet and which do you eat...and why?" and that really stuck with me."
 
[FROM DOMINIE:  Many years ago, in an effort to improve my health, I tried to be a vegetarian, but just couldn't stick with it.  I found that I needed some animal protein in my diet.  Some of my extended family were vegetarians for decades, but have become meat eaters again.  I don't know if being a vegetarian helps a person be healthier, because from my mail these past 10 yeras, I have found that they experience fibro, CFS, and other illnesses, just like non-vegetarians.  Each of us has to live with our convictions.  For myself, I don't worry about eating meat because people in the Bible ate meat, even Jesus, so I don't think it's wrong.  Perhaps meat-eating was part of the "fall" of man, because in the Garden of Eden, Adam and Eve ate only plants.  For those who want to investigate juicing and the vegetarian lifestyle, see http://www.hacres.com/.]
 
 
7. EXCESSIVE SWEATING
 
Question from a reader--
 
 "I wondered if you have any update on excessive sweating, which is suffered by those of us with Fibromyalgia? Some meds have been responsible for adding to the discomfort, but I wondered if anyone had discovered that it's mostly caused by a certain food or food? I 'd appreciate any information or source that you might have on this subject."
 
[FROM DOMINIE:  The floor is open on this one.  My first thoughts were that our autonomic nervous system is malfunctioning - see my page at www.fms-help.com/autonomic.htm.  Another cause of excessive sweating could be hypothalamus malfunction or even hormone imbalances--or perhaps we have too much adrenaline being pumped into our system.]
 
 
8.  CANADIAN FMS/CFIDS ORGANIZATION
 
From a reader--
 
"Here is an excellent FM organization here in Canada that may be
helpful also to American and International sufferers. The url is
http://fm-cfs.ca/home.html."
 
[FROM DOMINIE:  This website has tons of great information!]
 
 
 
9. CHRONIC FATIGUE IS A REAL ILLNESS, GOVERNMENT SAYS!
 
From a reader--
 
http://www.msnbc.msn.com/id/15535705/
 
 
10.  DOMINIE'S PERSONAL UPDATE
I continue to use the ideas and protocols listed at www.fms-help.com/what.htm.  I keep this list current, as my methods of coping change from time to time.  Without these helps, I wouldn't be functioning! 
 
Our school of music is going really well!  I have 32 students (piano and guitar), and I continue to play the piano for my church.  It's a blessing and a privilege to serve!   I am pain free, but still battle fatigue.  To read my FMS story, see www.fms-help.com/fibro.htm.  To read my CFIDS story, see www.fms-help.com/fatigue.htm.
 
The immune product I have been using since 2001 is the basis of everything else I do for my health.  If I stop taking it for even 2-3 days, the following problems come back -- lowered resistance, gas and bloating, breakouts and complexion problems, swollen glands and racing thoughts.  (Yuck!  No wonder I stay on this!!!)  For info and brand name, please write me at dombush@bellsouth.net.
 
I also use essential oils - see www.fms-help.com/oils.htm.  There are specific essential oils that help with fatigue, energy, stamina, relaxation, sleep, and warding off colds, viruses, infections and sore throats.  It is wonderful to not be a victim to viruses anymore.  As a piano teacher, I sit next to many students during the week who are sick, coughing, sneezing, etc.  I am glad that I can "fight back" these germs with essential oils - diffused and applied topically.  If I don't work, I don't get paid, so I reeeally don't want to call in sick.  These oils are my "shield!"
If you would like to be on my new oils mailing list or want info about the oils I use, please write me at dombush@bellsouth.net
 
Well, time is flying by - tomorrow I will be 55!   I was diagnosed with FMS in 1982 when I was 30 and working as a legal secretary in Gainesville, Florida.  I can hardly believe I have nearly 25 years "experience" with this illness now.  Read my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm
 
After many years of misery and disability, I have found ways to help myself manage the complex symptoms of this illness.  I have to take a lot of care to not overstress and overcommmit my time and energy.  And lately I have learned to be much kinder to myself, spending much more time resting and recuperating, so that I can be functional part of the "real world" for at least some of the time.  It helps too that my husband Donnie is such a help at home.  I am blessed!
 
Dominie Soo Bush


   
DISCLAIMER: I am not a medical doctor. I am a person suffering from health challenges. The purpose of this newsletter 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 presented in this newsletter. It is not meant to substitute for medical care nor to prescribe treatment for any specific health condition.
 

 
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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.