"My Socalled Bout with AIDS."
This past March, I had the unsettling experience of being diagnosed with an
AIDS defining condition. The news arrived with cruel precision on the
10-year anniversary of my testing HIV positive, coinciding perfectly with
the orthodox axiom that we get a decade of normal health before our AIDS
The diagnosis was based on a grade 3 Pap smear with cervical dysplasia, a
result that insinuates cancer. Devastating enough on its own, my HIV
positive label added a layer of complication.
As you may know, cervical dysplasia and cervical cancer were added to the
AIDS definition in 1993 causing the number of women classified with AIDS to
increase notably. Even though some 65,000 Americans are diagnosed each year
with cervical cancers, and only a small fraction of these (about .0015%) are
among women that test positive, HIV + cervical abnormalities = AIDS.
I imagined Dr. Matilde Krim cackling with delight at this seemingly tragic
turn of events. Director of the orthodox AIDS research group AmFar, Krim had
pronounced me ³delusional² in a national television broadcast last fall for
daring to consider myself healthy. According to the good doctor, I am merely
enjoying the so-called latency period between testing positive and getting
sick. During her interview, she did everything short of wish I would die of
As an outspoken representative for alternative AIDS views, a full time
mascot for healthy HIV positives, and a new mother for the second time,
tackling this challenge was the last assignment I wanted. The diagnosis was
totally inconvenient to my life and work. I fell prey to despair, called my
husband and sobbed into the phone. Together, we recovered my rationality. I
dried my tears and asked the doctor to perform another test.
Given the unreliability of diagnostics in general, and the fact that Pap
smear slides are read by lab technicians for a matter of seconds, this
seemed a perfectly reasonable request. She refused, however, imploring me to
³stop being in denial," and acquiesced only after I politely but
unrelentingly insisted. Holding my own was emotionally exhausting, and in
the end it felt more as if she were humoring me than respecting my judgment.
The second Pap came back grade 2, a slightly less concerning level of
diagnosis. According to my doctor, this suggested the presence of Human
Papilloma Virus or HPV, a supposedly contagious condition associated with
cervical cancer. Since I have never been diagnosed with a sexually
transmitted disease, my husband¹s never had one, we¹ve been together for six
years, and all my previous Paps have been normal, I questioned the new
results. My skepticism seemed to reinforce her notions I was lolling in
denial. Our conversation turned contentious.
I cited information refuting the HPV/cervical cancer hypothesis, Professor
Peter Duesberg¹s well-referenced deconstruction in particular. I recalled
how the assumption that HPV caused cervical cancer had risen to popularity
in the late 1970s following the complete failure of the Herpes
Virus/cervical cancer hypothesis of the 1960s. That according to studies,
half the American adult population is infected with HPV yet only 1 percent
of women develop the cancer, and while equal numbers of men and women have
HPV, men rarely develop penile cancers.
My doctor responded by recommending I see a specialist.
After much discussion, the new gynecologist acknowledged the presence of HPV
only correlates with cervical cancer in some cases, and there is no evidence
of a direct, causal relationship.
Both gynecologists agreed I should disregard the second test and consider
the one indicating cervical dysplasia to be correct. Both recommended a
colposcopy (a fairly invasive and painful procedure), to prepare for a
biopsy, and urged me to act promptly. Instead, I decided to gather other
opinions from holistic health practitioners.
In consultation with a naturopath, I determined I would follow the
gynecologists¹ advice and act as if the worst-case scenario were true, that
I had cervical dysplasia or cervical cancer. Together, we created a protocol
that would serve to better my health no matter what diagnosis‹if any‹were
correct. This program included detox, colon hydrotherapy, digestive enzymes,
daily juicing, food combining, some new supplements, and regular
exercise‹something I¹d slacked off on since the birth of my daughter. On my
own, I added ozone therapy to the regimen.
Life went on as normal, apart from the whirr of the juicer every morning and
arranging for childcare during the ozone infusions.
Although I vacillated between dauntless, nervously hopeful and scared, my
confidence in what I know about HIV and AIDS did not waiver. What makes
sense in times of health makes the same sense in time of health challenge. I
felt no temptation to suddenly regard my positive HIV test as an illness in
need of treatment. Sometimes I worried how others might interpret or use my
situation, but the possibility of cancer did not inspire any panicked
denouncing or erosion of what I understand about science, medicine, natural
health, HIV and AIDS. If given a choice, I would have preferred not having
to deal with another dreaded diagnosis, but as long as life dished it up, I
accepted the opportunity to learn.
In August, I had a new Pap smear performed by a third gynecologist. I used
an assumed name and did not mention my HIV status. This time the result was
My doctor was at lunch when I called with the good news, so I left a message
with the front office manager who was totally unimpressed. She explained,
³That happens all the time. Most women get an abnormal Pap after having a
baby. We just run the test again and it usually comes back normal. If not,
the doctor gives them this little cream and that takes care of it.²
Until that moment, neither doctor had mentioned an abnormal test was normal
after childbirth, that second smears are routinely performed in such cases,
or that there was any ³little cream.²
I have since discovered that the overwhelming majority of my female
friends‹all HIV negative, some with children‹have received abnormal Pap
results like mine. For them, a second test was a matter of course rather
than a hard won concession. In every case, their results reverted to normal
with no therapy.
Testing HIV positive often means being treated differently‹with prejudice,
based on unfounded assumptions, and as though well informed decisions are
elaborate forms of denial. It seemed the dysplasia diagnosis confirmed my
doctors¹ beliefs about HIV, and my supposed illness was the expected
outcome. I felt frustrated, and even humiliated. I had to insist on getting
what everyone else receives without discussion‹the chance to be a healthy
human being until proven otherwise.
Whenever I speak in public someone invariably asks, ³If HIV doesn¹t cause
AIDS, why do a lot of people who test HIV positive get sick and die?² I
think a better question is: How does anyone who tests positive remain well?
Between the initial devastation of the diagnosis, the subsequent social
isolation, dire predictions by doctors, lab tests measuring our remaining
time, medical care that assumes our inevitable early demise, AIDS
organizations poised to usher us into death, negative expectations of
friends, family and the public, constant media reports on the incurable
fatal virus, pressure to consume toxic drugs, to regard ourselves as
infected, abnormal, and ill, pitches to sell off our life insurance,
exchange work for disability, and get a handicapped parking pass, and the
orders to keep a safe, latex-covered distance from people we love, I wonder
how so many of us manage to live.
According to official definitions, I had AIDS a few months ago. I¹ll never
know if the detox, ozone treatments, and dietary changes ³cured² me, if the
diagnosis changed along with my name, or as with most women, my cervical
abnormalities went away on their ownŠif they ever existed in the first
place. Of one thing, however, I feel certain: My knowledge and convictions
prevented me from accepting an unverified diagnosis, engaging in unnecessary
invasive procedures, and from believing my ability to live in health had
come to a crashing halt.
All too often, our options are limited by medical authorities that encourage
us to believe the worst, disregard the facts, deny our intuition, doubt our
health, and quietly obey orders. I offer my experience with hopes that those
of you also labeled HIV positive will create a foundation of knowledge that
supports your choices and that enables you to act in your best interests
when faced with life¹s many challenges.
Is 'HIV=AIDS' An Infectious Misconception?
HIV/AIDS Alternative Views http://forums.about.com/innocuous/start