You may wonder why I
am writing about this – so here is an explanation. My beautiful, spunky, 3 year
old niece has been diagnosed with MAC. I last saw her in November of 2013 when
we were in California . One afternoon we took some time away from the events of
the funeral which brought us together and we went to the beach. It was her
first experience seeing the Ocean. She was SOOOOO excited. I held her hand as
we walked down the stairs. With every step she squealed “let’s go!” We had a
great day at the beach and she LOVED the water. She loves being outside and
playing and so her getting sick has caused a huge shift in her world and in the
world of my sister and brother in law. I went online to find out what I could
about her diagnosis and today I am sharing what I have learned. (My sister has written on her blog all about the experience they are going through so if you are interested in hearing about all this in her words you can link to her blog HERE)
2.
MAC is related to the tuberculosis germ, but is not contagious.
This would explain why my niece had a positive tuberculosis test. I never quite understood why she had a
positive tb test, but now I do!
3.
MAC organisms can be found virtually anywhere in
the environment. They live in water, soil, foods, and a variety of animals. As
a result, it is difficult to avoid coming into contact with MAC.
4.
MAC USUALLY
this affects people with the later stages of AIDS or people who are old and
have weakened immune systems. Try looking for information on MAC for children. It
is insanely uncommon and finding out information on children with MAC is
extremely difficult.
5.
Here is some of the information I found online
about MAC – which will illustrate how frustrating this process has been for my
sister and brother in law : MAC pulmonary (lung) disease’ major susceptibility risk factors
depend on which of the two types of disease are present. For nodular disease
the risk factors are being Caucasian, female, average age between 60 and 70,
and having bronchiectasis. The most important relationship in women is that of
bronchiectasis. For patients with MAC upper lobe cavitary disease, the major
risk factors are being male, average ages between 50-60, heavy smoking, and
often-excessive alcohol consumption.
Obviously my niece is neither a female
between 60 and 70, nor a male between 50 and 60. She is not a heavy smoker, and
her alcohol consumption isn’t excessive. DUH. She doesn’t consume alcohol!
6.
Fever is the main symptom of MAC, along with
night sweats, chills, weight loss, muscle wasting, abdominal pain, fatigue (often
caused by anemia), and diarrhea. These
symptoms in a little girl obviously are debilitating. She obviously does not
have much weight she can afford to lose, but she is in a lot of pain.
7.
MAC can also cause enlargement of the liver and
spleen, as well as the lymph nodes. This is how it was diagnosed in my niece –
who had one of her lymph nodes so completely destroyed by the bacteria that the
surgeon didn’t even think it WAS a lymph node when he removed it from her body.
8. As the bacteria spread through the body and
affect different organs there are obviously different symptoms. It usually doesn’t
spread from one organ to another, but in my niece’s case it is spreading or was
beginning to spread. My sister has to watch for things like vomiting, diarrhea
(which she got) and a cough – which would mean it has spread to her lungs.
9.
It is
possible to prevent MAC from causing disease and symptoms in HIV-positive
people using drugs (prophylaxis), a type of prevention that is almost always
recommended for HIV-positive people with compromised immune systems (less than
50 CD4 cells). Again and unfortunately, my niece is not in this
category of patients. It makes her treatment insanely difficult.
10.
If an HIV-positive person is diagnosed with MAC,
he or she may be required to continue therapy for life. This is necessary to
prevent MAC from returning. At this point we don’t have any idea how long the
treatment will be required for my niece. She has started the treatment and she
is reacting well after the first week.
11.
MAC must be treated with a combination of antibiotic
drugs to maintain control over the infection.
12.
Side effects of the medication taken to kill the
bacteria can include nausea, headaches, vomiting, and diarrhea. Blindness may
also occur as a side effect to the medication. The side effects to the bacteria
are almost as scary as the effects of the bacteria itself. Obviously we don’t want
our little angel to go blind - but nor
do we want the bacteria to shut down all of her organs.
13. Here is a photo of MAC bacteria under electron microscope.
