Like me, Maureen was not on
any medications for HIV when we first started volunteering. When
Maureen started the meds she developed severe side effects. Protease
Inhibitors had come into use by 1998 and Maureen was on a combination,
which included them. She developed some of the bizarre and severe
side effects found among patients treated with protease inhibitors.
The most common effect takes the form of disfiguring fat deposits,
an extended belly caused by the drug Crixivan, with nicknames
such as the "buffalo hump" and the "protease paunch".
These side effects were reported for the first time at the Fifth
Conference on Retroviruses and Opportunistic Infections in 1998,
reporting that 60% of HIV patients taking protease inhibitors
develop the manifestation.
Maureen could not tolerate the medications and she believed it
made no sense to put children, women and men on the same dosages.
She believed the reason she wasn't tolerating the medications
was because the dosage was too high and with that, too toxic.
She was a petite woman of five feet. Like many others, Maureen
wasn't sick, but was told by AIDS specialists at
St. Paul's Hospital that if she did not continue on
the drugs she would die. I saw her just after leaving the
hospital, crying because she had been yelled at when she
said she wanted to stop taking the treatment. Maureen, like
many people living with HIV, is the reason we have advanced
in HIV/AIDS treatments. Maureen was so determined to show
that the dosages of treatments needed to be regulated
differently for children, women and men, that she not only
wrote a paper, but presented her findings in Geneva at the
AIDS Conference the following year.
Maureen's body was ravaged by the toxicity of the
HIV medications. These new antiretrovirals and protease
inhibitors can have a negative effect and destroy T cells,
B cells, red blood cells, kidney, liver, intestines,
muscle tissue and the central nervous system. Quality of
life is greatly affected due to the side effects and many
diseases are showing up that are caused by the pharmaceuticals
because among other things, these drugs can weaken
the immune system.
Maureen's death in 2001 was very difficult. Even
though I have watched so many people deal with illness
and have watched close friends die, Maureen's death
touched me in ways I can't really explain. Only to say,
she was way too young in her 30's, a gifted and loving
person with strong convictions and dedicated to the education
of others. Having a close relationship with her family also
made her death more difficult. Equally, shortly after
Maureen's death, it was announced that
Dr. Julio Montaner, Director of Clinical Activities for
the B.C. Center for Excellence in HIV/AIDS at
St. Pauls Hospital and one of the leading experts
overturned the conventional "hit them hard, hit them
early" practice in antiretroviral drug therapy, making
individualized treatment available. Prior to this
announcement, antiretroviral therapy was routinely
recommended to anyone infected with HIV. Maureen will
be truly missed by all who knew her, but she certainly
made a difference in the short time she was with us!
Many more people will benefit!!!!
My concern is for individuals who have health problems
that are not addressed and who suffer needlessly and
possibly die. The AIDS virus is NOT solely responsible
for every health issue facing infected individuals.
The underlying concern is for those people who may not
be having any trouble with the virus in their system as
much as having some other factor affecting their health.
Symptoms of illness cannot be overlooked nor can all
symptoms be attributed to HIV. Rather than focusing all
of the emphasis on attacking the HIV virus, consideration
must be given to recognize symptoms of disease.
The disguises are many but the faces are those of individuals.
In the early 90's, at Howard University Hospital, doctors
reported distressing patterns of undiagnosed infections.
Findings of 40, HIV+ women who died of AIDS, showed at
autopsy, that half of the 40 women had more than one
disease unidentified! Seven (7) out of the 40 had several
other diseases. The others diseases were recognized only
at post mortem. Alarming about this situation was the
mis-diagnosis and no diagnosis that took place. Many
have died and many have suffered greatly due to
mis-diagnosis or no diagnosis.
My own experience with AZT in 1991 was one in which
I suffered from all the many side effects of AZT.
After having managed for 6 years without any drugs to
combat HIV and a continual bombardment from the medical
profession telling me I needed to be on the drugs,
I finally agreed and started taking AZT. I had chosen not
to take drugs for HIV from the time I was diagnosed until
this time, but having lived more years than expected,
I thought maybe this was a good time to start some
treatments to ensure living even longer.
When I did start AZT, it was with a positive attitude.
For the first six months, there were no signs of any
problem with my health or side affects. Unfortunately,
over the next few months, things changed considerably.
There was a progression of symptoms taking place and I
started to develop severe side effects caused by AZT.
I was suffering from out-of-mind experiences,
(years later I would learn many people who were
diagnosed with dementia did not have dementia,
but were suffering from the toxicity of the AZT),
headaches, fatigue, nausea, anemia, insomnia and diarrhea.
Along with these, I was suffering with the crippling
effects of neuropathy causing a deterioration of the
nervous system in my legs and in constant excruciating
pain caused by this condition.
Over the months, my health deteriorated and it was
apparent something had to be done. I had to find a way
to fix what was wrong. Not knowing what or how to do
that, I went to see my doctor. Understandably, many
people living with HIV/AIDS suffer from anxiety and depression.
I was not depressed and if I was anxious, it was only
to find out what was wrong. Let's fix it and
get on with my life! I related each and every thing
I was experiencing to the doctor. I must admit to not
having all my wits about me and I may have appeared
out of sorts, but I am not a depressed person.
Even so, the doctor gave me a prescription for
anti-depressants, which I took for several months.
When I stated again my concern regarding the ongoing
problems that I originally brought to his attention,
he referred me to a psychiatrist. The psychiatrist
prescribed an anti-anxiety medication, which I took.
I was very upset emotionally due to the bombardment
of all these additional drugs and their side effects!
My legs were getting worse with more pain as time went
on and the other signs that something was wrong still existed!
If I had my wits about me and could have analyzed the situation,
I would have realized that all the earlier signs,
headache, nausea, diarrhea, insomnia, dementia, my legs
crippling from neuropathy, discomfort and pain were
in fact the side effects of AZT.
It appeared as though my illness was progressing and
I might die. I hadn't received any answers from
the doctor so I decided to stop taking all the drugs.
When I was off all of the drugs and my head cleared
and I could think rationally, I happened to find the
literature on AZT given to me by my physician.
It clearly stated on the paper given me by the doctor,
each and every side effect of AZT, all of which I
conveyed to the doctor. I changed doctors when the
doctor did not recognize that I was suffering from all
of the many side effects of AZT, but instead put me on
anti-depressants and anti-anxiety meds. Clearly, it was
not appropriate for me to continue with a doctor who could
not recognize the side effects of the drugs he prescribed!
While others were convinced I was dying, had I not decided to
stop taking AZT, there is no doubt I would have died.
The AZT has caused irreparable damage and its effect on
my body has changed the state of my health forever!
Early on, treatment consisted primarily of AZT, every
four hours in high dosages. Today, dosages have been
reduced considerably and AZT is still used in combination therapy.
Also, AZT has been used successfully to prevent the
transfer of HIV infection from mother to child.
Unfortunately, people died due to HIV illness and the
toxicity of AZT. However, many more benefited and many
lives were saved. Many people lived until newer more
effective drugs became available and are living
healthy productive lives today.
I used AZT only for a period of 9 months and after
stopping the AZT, I lived 7 years without HIV/AIDS drugs.
For a very long time during this drug free period, I had a
problem with diarrhea and I tried to get my doctor in
Vancouver to validate this condition. I knew my body.
I tried everything to address the problem. I was aware that
something was going on in my body and I wanted to find
out what it was. When I first mentioned to my doctor
my interest in being seen by a specialist,
he said, "If I send you to a specialist for a scope and
they find nothing and a few months down the road you are in discomfort
and need to have it done again, the technicians will not want to do it." Ridiculous
as that sounded, he wouldn't refer me to a gastroenterologist. Instead, he prescribed medication to
help relieve the diarrhea.
Each time I went to the doctor with concern about the
diarrhea, he would say the AIDS virus caused the
diarrhea and that I should be on the HIV/AIDS drugs or
I would progress to disease and die. This wasn&t the
first time I heard this! Many who choose not to go on meds
have heard this over and over. I didn't want to go on
the drugs. I just wanted to clear up the diarrhea.
Several months later, I visited the doctor again. Still
experiencing problems with my bowels, I requested a test be
done. The doctor looked at me and in a taken aback kind of
way, he said, "Hold on, I'm the one who decides
what tests to do and whether they are necessary! "
Repeatedly on several earlier visits, I described the symptoms
I was experiencing. He asked me once again to go through them.
Had he not documented them? Obviously, he hadn't
validated them! Again, he advised anti-viral therapy,
due to his worries and concerns for progression of disease
and the likelihood of all my problems being HIV related.
He stated that even with tests, there might not be
conclusive evidence of what is causing the problem.
I said I wanted to know and that these health issues
were not normal. Before I could make a decision to start
anti-viral therapy, I felt these health issues needed to
be answered. The problems most likely would never be
given consideration once on the anti-viral therapy.
Unfortunately, very little recognition was given to my
health concerns by this doctor, with only HIV/AIDS
treatments recommended. So, off I went to find another
For over twelve years of dealing with HIV infection,
I tuned into my body and very often approached physicians
with information regarding a health problem. My ability to
describe the symptoms, the area affected along with being
well read on HIV/AIDS and with my history of HIV, gives me
some idea as to what may be the problem. Often, this includes
knowledge of tests that may be useful to detect the situation
and knowledge of possible treatment required.
My determination and constant pursuit to get to the bottom
of an illness led to success. When I did find a new physician,
an appointment was made with a specialist in gastroenterology.
Later, a scope was done, which showed colitis. For over a year,
I tried to get my previous doctor to acknowledge that there
was a problem. After six weeks on medication for the colitis,
my diarrhea was cleared up.
Having colitis undiagnosed for such an extended period
of time, meant I wasn&'t absorbing essential nutrients,
vitamins and minerals needed to keep my immune system running
properly. I lost weight because of the constant diarrhea and
was not able to gain weight regardless of how nutritious my
diet was. Going so long before the colitis was diagnosed
and treated was the primary cause of my weakened immune
system. These circumstances played havoc with my health,
which caused my immune system (cd4 count) to be seriously
weakened, putting me at risk -- not HIV!
If I had been satisfied to accept that nothing could be
done, I would have continued to suffer much longer.
There are many different opportunistic infections and
diseases and I feel that validation of the concerns of
patients regarding their health should be met. Over and
over, we are directed to HIV/AIDS drug treatments as a
solution, but the problem isn't necessarily one the
HIV/AIDS drugs will eradicate.