5/30/05
other points of interest which we have not yet had time to research
and/or incorporate into the narrative sections of this web site.
possible causes of CFS seem to indicate an immune dysfunction from long periods of illness or possibly
overuse of antibiotics without appreciable improvements in their illnesses. In this case, the best
treatments would appear to be to find a way(s) of restoring our immune systems to function properly.
According to a recent study, 80% of people with CFS start with an infection.
2) STRESS: seems to be a common trigger in making our health and situation worse according
to a recent study. This would indicate the need to find ways to reduce personal stress or work on
methods of stress management. The inability to get proper sleep and rest also makes our conditions
worse.
3) DRY MOUTH: Several people have mentioned dry mouth which creates cavities in your
teeth like it is going out of style. Dry mouth is usually caused by certain medications such as
antidepressants and sleeping pills. Some people have mentioned it as a result of the CFS/FM. If you
have dry mouth, you should talk to your dentist and/or doctor quickly. See "DRY MOUTH" under
treatments for more information. Our dentist recommends "biotene". You can get it in toothpaste form,
mouth wash, and oralbalance that is applied directly onto your tongue. Dry mouth is something you
must battle constantly.
4) CHRONIC BORRELIA: infections was mentioned on the message board of
immunesupport.com (see "websites" section to locate specific message). It is a form of lyme disease
which some doctors in the UK have found promising. However, we still continue to believe that lyme
disease could be only one of many possible causes of CFS.
5) BRAIN FOG: seems to be common to most of us at one time or another. Racing Brain
Syndrome is another problem we seem to have now and again when our minds just won't stop.
Somehow this usually happens as we are trying to sleep. Some people call it "bouncing brain". You are
not alone. Even with mixed studies, ginkgo still remains our best bet especially with a vitamin B
Complex. Some medical studies have shown that some medications used for Parkinson's and
Alzheimer's have been very helpful; however, strong drugs of this nature should be used only as a last
resort and with the agreement of your doctor.
6) CARE GIVERS: We too often forget those around us who help put up with us in our daily
lives. They don't really understand how we feel and the problems we face sometimes doing the simplest
of things. We need to remember these people who help us and tell them so. A message for our
care givers: please try to understand us and be patient with us. Some day things will
be better!
7) CAUSES: Recently, I got an email from the National CFIDS Foundation, Inc. that told me
that immune dysfunction is incorrect because there would be a depletion of STAT1 alpha. He is going to
send me a draft. They also think they have the cause down and are looking for funding. ProHealth sent
me an email that Dr. Katz is now sure that it is some kind of autoimmune disease. In the meantime folks,
we are going to have to help ourselves
8) TREVOR MARSHALL, Ph.D.: Many people are in a buzz over the Marshall
Protocol, originally developed for Sarcoidosis patients, that is currently used by some people with CFS.
This gets into the TH1 inflammatory process and autoimmune system. More information can be found at
www.immunesupport.com and www.marshallprotocol.com.
9) IMMUNE RESPONSES: A lady recently emailed us stating that when her immune response is
low and she suffers from severe depression. We have mentioned this several times throughout this
website that a low immune response causes all types of severe reactions, including increased
depression, often severe, as well as many other types of severe responses. We have not yet stated any
specific response to immune dysfunction because everyone is different and what works for ea ch of us is
also different. We do know that if you are prone to certain illnesses or symptoms that a bad day or
feeling extra low will exacerbate these conditions. For instance, my wife suffers from problems with
her entire left side of her body. When she has a relapse, it kicks in her left side problems worse than
ever. I, on the hand, feel sick all over and my body pain greatly increases when I am having a bad spell.
10) CRITICISM: We recently received a couple of email's with suggestions. One lady
advised she would like to read it, but red was very difficult for her. We have and are in the process of
changing colors on the website eliminating red. However, a website is not a book someone reads cover
to cover. We try very hard to make it easy to read and highlight the most important points
because most people scan a website. We try to space each section to be printer friendly to enable
you to take sections to your doctors. Therefore, printing the pages will come out in black (if you have a
color, you'll have to adjust it. Secondly, a lady said we had a good site, but it didn't include that when
she was down several things became worse. We have tried to state all the way through that CFS gets
better and worse which does effect your whole body. We treat highs and lows differently. For instance,
my wife and I have a "curing" level of the things we take including supplements. When we are down, we
take full dosages as suggested. We have a "maintenance" level that are lower dosages when we feel
about as good as we can.
11) HOW EFFECTIVE ARE OVER-THE-COUNTER COUGH
MEDICINES? According to a recent "Parade Magazine", Americans spend billions of dollars every
year for over-the-counter cough medicine. The magazine referred to several studies and one on 100
children with upper respiratory infections. The results for the placebo were as good as those for cough
syrups. Ir recommended getting a doctors prescription for a cough syrup with codeine or one of the
derivatives. We don't necessary agree with this and recommend using codeine in only
severe cases and continuing coughing that cannot be stopped.
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