A HEART TO HEART TALE
Updated:
5/30/05
Not so long ago, I was reading the Winter 2004 edition of "The CFIDS Chronicle" and noted
about the observation that over 80% of people with CFIDS have unrestorative sleep
problems.  My wife and I have had CFIDS for over 15 years and each of us has been going
through different, but more severe sleep problems than we had for any years before.  None
of our sleep medications that we have tried are working.  What is the cure?  “Go to a
sleep specialist.”  Almost everything we read about CFIDS tells us to go to a specialist.  
We have gone to several specialists with very limited success.  If anything, go to a doctor
who specialize in CFS or is very knowledgeable in the field.

On the second page of “letters to the editor” of Readers’ Forum, I read: “Before a cure, we
need to get rid of the humiliating, degrading “F” (Fatigue) word.”  That statement is the
single most important statement ever made about CFIDS because nobody
takes us seriously.  We say we are “fatigued” and everybody gets “fatigued” from time
to time whether sick or well.  Here we have a difference in definition.  Suddenly, it hit me!  I
now know what I have been trying to say for years without knowing how to say it.  CFIDS
works funny like that.  The brain doesn’t want to function right.  Maybe I still can’t say it well,
but I am going to try.

THERE IS NO CAUSE FOR CFIDS! We diagnose and define CFIDS symptoms,
not illnesses.  I have believed for years that CFIDS was and is an immune dysfunction, and I
think that I or we can prove it.  For example, a prestigious research university made
newspaper headlines a few years ago by claiming that their test results showed that a lot of
people with CFIDS suffered from hypotension.  I was enraged by the comments, because I
have CFIDS, and I have had hypotension, and I know that hypotension is not CFIDS.

My tale starts in 1988 when my wife tested positive for strep throat.  Our doctor
gave her the usual antibiotics to cure her.  The strep throat did not go away, or if it did, it
kept coming back to be treated again with stronger antibiotics.  (An immunologist recently
informed me that there are no strep throats that cannot be cured with antibiotics.)  The next
thing I know is that I test positive for strep throat that was treated with the usual antibiotics.  
The strep throat did not go away, or if it did, it kept coming back to be treated again.  The
next step in my saga is that in November 1988, both my wife and I came down with the worst
case of "flu" that we had ever had.  This started our journey into CFIDS.

On a beautiful spring morning in May 1992, I suffered a class 4 heart attack and lived
through it, despite congestive heart failure 3 days later.  By the time they thought they could
get around to a bypass operation, I was running an extremely high temperature from what
the doctors said were many infections.  They fed me almost every kind of high-powered
antibiotic to kill as many of the infections as they could.  Five days after my bypass, I had to
go through a second surgery to remove arterial deposits in my right leg.  During this time, I
received blood transfusions.

(A special personal message from my experiences.  You see very few obese
people in CCU.  Many current studies show that obese people and people
who do not exercise properly greatly increase their risk of a heart attack.)

My wife and I were worried about how my CFIDS would affect my recovery.  Surprisingly, I
had no symptoms of CFIDS for about 3 months.  This gave me time to start my recovery.  
Later, I had to ask the question: Why did my symptoms of CFIDS go away for 3 months?  
Was it the massive doses of antibiotics and/or the blood transfusions?  I finally decided it
was the blood transfusions of “good” blood which helped my immune system get under
control long enough to permit my recovery.

In 1998, I received a heart transplant from a 20-year old male athlete's heart.  This time I did
not get a multitude antibiotics, but I did get the blood transfusions.  I expected the same
benefits I got in 1992 to give me time to recover.  WRONG!  I felt more CFIDSy than I had
in years and could barely function.  Again, I and my doctors had to ask why.  The major
difference is the immune suppressants that I was and am required to take to keep my body
from rejecting my new heart.  The blood transfusions had no positive affect on me.

THERE IS A CAUSE FOR CFIDS! The cause is an immune dysfunction caused by
mutant infections  that cannot be cured with the normal antibiotics.  Probably, the overuse
by us and doctors of antibiotics will ultimately affect the immune system.  I think that if all of
us who do have CFIDS go back into our medical history far enough that we will find a time
when an infection or illness did not react correctly to treatment.  All the questionnaires we
have received are from people whose illnesses started with some disease or illness.)  This is
why so many of us test positive for Epstein-Barr, mononucleosis, CMV, HHV6, etc.  There
are protocols for some of these illnesses which will help until our immune systems are back
in order.  For instance, after my transplant, I developed active CMV which really did me in.  
However, there is a protocol for CMV and I felt better after the treatment, but went back to
normal CFIDS.  When doing a throat culture, they found CMV again. A new protocol seems
to have placed it back on the inactive list.  Both my wife and I have tested positive for HHV6,
but there is not currently a protocol for long term help with HHV6 as we both can attest to
from blood test results.

Lyme disease is another problem.  We know that it is transmitted by mosquitoes, and a
protocol exists for treatments.  However. I have recently read that there seems to be some
sub-strains of Lyme disease which are not yet treatable.  Some UK doctors are currently
testing to see if some of the infections resulting from Lyme disease are in a larger portion of
ME (CFIDS) patients.

So, we should not only get the “F” (Fatigue) out of CFIDS, but we need to get rid of the “S”
(Syndrome).  We have CHRONIC IMMUNE DYSFUNCTION

Now we have an objective to find ways to get our immune systems back
under control.  I do not believe there will be one major solution, but many, since there are
many ways our immune systems can get messed up.  The symptoms everybody is talking
about are also ways we can mess up our immune systems worse; such as, lack of restful
sleep, stress, pain, a cold or flu, etc.  Remember, the over use of antibiotics can mess up
our immune systems and create mutant viruses.  However, there are researchers currently
working with CFS believe there can be 1 single cause.

Until we find ways to correct the immune system, we will have to continue to treat the
symptoms, experiment with different treatments, and help each other with things that have
worked or not worked for us over the years.  This is an area where people with CFS/CFIDS
can and should help each other through chat rooms, support groups, and communicating
with others who are trying to do the same thing.

I have never responded to the family of the young man who gave me his heart because in
some ways I always felt guilty by taking a heart that might have saved someone else’s life or
someone who would be able to do better with a new heart.  I no longer feel that way.  I must
have lived through a class 4 heart attack, congestive heart failure, sudden cardiac arrest
(death) in a restaurant, and a heart transplant for a reason.

I feel that the reason I lived through all of this is to start getting the medical profession
concentrating on immune dysfunction.  We can also help to deter people from getting
this “Dreaded Disease” due to the overuse of antibiotics, which is even concerning the
medical profession. Remember, our CFS/CFIDS seems to have started with a mutant strain
of strep and then was over-treated with antibiotics which did not work - a chronic
immune dysfunction.
WHAT CAN YOU DO TO HELP AVOID A HEART ATTACK:  Stop
smoking!  Get blood tests to check cholesterol!  Keep blood
sugar within normal range!  Diet until your obtain normal weight
for you height, age, and bone structure!  Find ways to control and
manage stress!  Keep a heart healthy exercise program! Eat
fruits and vegetables on a regular basis.  Consume alcoholic
beverages in moderation, unless your beliefs prohibit it.  KNOW
YOUR FAMILY TREE.  Generics play an important roll with your
health.  Go to www.hhs.gov/familyhistory for the latest "My Family Health
Portrait".
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