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Is It Or Isn’t It? Does Your Doctor Know For Sure?

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  • claudine intexas
    January 2001 s Advocate: http://www.hcvadvocate.org/ Is It Or Isn’t It? Does Your Doctor Know For Sure? C.D. Mazoff, PhD This last summer I was invited to
    Message 1 of 1 , Oct 31, 2001
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      January 2001's Advocate:
      http://www.hcvadvocate.org/

      Is It Or Isn�t It?
      Does Your Doctor Know For Sure?

      C.D. Mazoff, PhD

      This last summer I was invited to give a talk to a
      gathering in Nelson, British Columbia (cross the
      Golden Gate, and go north until you see the first
      grizzly bear and then hang a right). In the audience
      were 2 physicians and several nurses. I opened with
      the following sentence. �I�m not here to cause an
      argument, and I don�t want anyone to get upset. I�m
      also not a medical doctor, but in my opinion,
      hepatitis C is NOT a liver disease; it causes liver
      disease among other things. To my relief, nobody
      laughed, and nobody left.

      This fall I had a chance to repeat myself at the
      Washington Hepatitis C Summit in Seattle Washington
      (cross the Golden Gate, and go north until you see the

      first salmon and then hang a left). This time I put
      the question to Dr. Robert L. Carithers, Director of
      Hepatology at the University of Washington. His
      response was �yes, calling hepatitis C a liver disease

      was more due to lazy infectious disease specialists
      than aggressive hepatologists.�

      So if hepatitis C is NOT a liver disease, why is it
      called a liver disease? And what does this have to do
      with you and me anyways? Isn�t it just a technicality?

      A semantic quibble? No.

      How many times have we heard the story of someone who,

      not feeling well, goes to the doctor and is told a
      version of the following: �Oh, well you have hepatitis

      C, but not to worry. It�s the best kind to have. And
      as to your symptoms, well they must be in your head
      because your liver isn�t scarred enough to be causing
      them. Here take these antidepressants and go home.�
      But doctor,� you protest, �I�m so tired and achy, it
      can�t be in my head. I�m losing my job, I can�t
      concentrate, I think I might need to apply for
      disability. Could you write me a letter?�

      So, the doctor writes a letter that goes something
      like this: patient is slightly narcissistic and
      perhaps undergoing personal problems. The illness is
      not serious, and most likely temporary. I have
      prescribed an anti-depressant.

      How it works:

      When a liver becomes heavily scarred, no matter what
      the cause, it can no longer do its job of converting
      food into energy and of cleaning up after itself. It
      gets sloppy and leaves by-products in your system,
      some of which act like poisons. These �toxins� can be
      measured through blood tests. A person with this
      condition-end stage liver disease-will need to take
      special medicines to try to help compensate for the
      liver dysfunction. Hence, the term �de-compensated�
      cirrhosis.

      Those who hold that hepatitis C is a liver disease
      will only acknowledge �symptoms� at the point of
      decompensation. Up until then, anything you experience

      is caused by something else, not the hepatitis C, so
      they believe.

      Those who hold that hepatitis C is a systemic disorder

      see the situation rather differently. They see a
      system under attack by a virus that multiplies very
      very quickly, producing viral loads much higher than
      in HIV. They see an overworked and confused immune
      system trying to cope with a virus that mutates
      rapidly to avoid detection. They see a virus that
      directly inflames muscle, nerve, joint and heart
      tissue; that triggers all sorts of immune
      irregularities.

      Is it any wonder then that many persons with hepatitis

      C not undergoing treatment, nevertheless experience
      symptoms similar to those on Interferon: sweats,
      aches, blurred vision, dry mouth, fever, memory loss,
      confusion, irritability, and so on. Surely all of
      these people cannot be making it up, so what then is
      causing all of this? Answer - a body under attack from
      a virus.

      There are several studies showing that symptoms
      reported by hepatitis C sufferers often bear no
      correlation to enzyme levels, stage of scarring or
      liver dysfunction. Puzzled researchers have come up
      with various theories to explain the aches and the
      �fatigue.�

      Fatigue is caused by metabolic dysfunction
      Fatigue is caused by a blunting of the stress response

      Fatigue is caused by altered transmission of nerve
      impulses in serotonin pathways
      Muscle aches are caused by direct activity of virus on

      muscle tissue
      Confusion and memory problems are caused by the virus
      hiding in the brain.
      Tiredness and achiness are caused by heightened immune

      reaction (cytokines)
      In many cases, the above symptoms may also be caused
      by what are called �extrahepatic� illnesses that have
      been triggered by the hepatitis C virus and your
      body�s response to it: but there are specific tests
      for these other conditions, and should you develop
      one, if your doctor is thorough, he or she should find

      it.

      But what if they don�t? Does that mean you�re making
      it up? Sad to say, many doctors around the world still

      perceive hepatitis C as a slowly moving, non-life
      threatening, and non-disabling liver disease for the
      majority of those who have it. And as long as this
      perspective obtains, it�s not going to be easy for
      you. Some physicians and researchers understand the
      seriousness of the illness and the effects the viral
      activity has on many of us, but they are in a
      minority.

      Many hepatitis C groups take an active position with
      respect to education and advocacy. The Hepatitis C
      Support project in San Francisco is one, HepCBC in
      Canada is another. Fighting for your rights and
      educating physicians when you�re ill is not fun, but
      if we don�t do it, who will? I encourage you to find a

      local active support group and to help change the way
      we are treated. If not for yourself, then for someone
      you love.


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