My
Story About Hepatitis C
Finding Out
On November 8, 2002, my telephone rang.
“Is this Melody?” I said it was.
“This is Dr. Hekmati. Are you alone, where you
can talk privately?”
“Yes,” I said.
(I had just been in for a routine physical exam three
days ago.)
“Did you ever use drugs intravenously?”
he asked.
“That’s not a secret,” I said. “Everyone
who’s read my books knows I used drugs a long
time ago. Late sixties, early seventies.”
“I have some bad news for you then,” he
said. “You’ve got Hepatitis C.”
He said I needed to retest for accuracy, then he hung
up the phone.
Hepatitis C? I had heard about it. I knew
people who had it and had to have liver transplants.
In 1993, I sat by a friend’s hospital bed
– a fellow counselor at a treatment center where
I had worked – and watched his stomach swell until
he died from it.
I was convinced that I was one of the people who had
a false positive -- until my next test results came
back.
My confirming scores arrived in words and numbers that
sounded like a foreign language.
My AST was
40, ALT
49. I had an HCV RNA PCR
viral load count of 756,090
iu/ml or 1,512,180 copies/ml.
I didn’t want this disease and I didn’t
understand the lab work scores. But if I had to
have Hepatitis C, I’d take the smaller number.
“Seven hundred and fifty thousand doesn’t
sound too bad to me,”
I said to the nurse who called to report the lab results.
“Well it sure sounds high to me,” she said.
Learning about the Disease
I had spent most of my adult years trying to believe
that I was loveable.
With this new diagnosis of a disease that had probably
been in my system for thirty or more years, I felt untouchable.
I went over to my daughter Nichole’s home on
Sunday to cook dinner for her family. When she held
out her youngest son Maceo for me to hold, I stepped
back.
The last thing in the world I wanted was to infect
him.
I felt contagious.
Dangerous.
Like a ticking time bomb.
I opened my purse and pulled out a pair of rubber gloves,
preparing to start cooking.
Nichole grabbed the gloves and started laughing.
“I’ve already started researching this,”
she said. “You can hold the baby. You can kiss
the baby. You can share food with him, Julian, Michael,
or me. You can cook without wearing gloves. It’s
a blood-transmitted disease. The only things you have
to watch out for are if you cut yourself. And you shouldn’t
share toothbrushes or razors because there can be blood
on those things.”
It took another month of research to believe what she
said was true.
After sifting through the morass of data available on
the Hepatitis C Virus, commonly referred to as HCV,
some facts began to repeat.
What is consistently reported by national organizations,
including health organizations and those dedicated to
HCV public awareness, is that HCV is a blood-to-blood
transmitted virus. It is not an STD (sexually transmitted
disease) unless sex involves blood contact or a person
has multiple sex partners. About 1.8 percent of the
United States population (four million people) and 3
percent of the world’s population (170 million
people) have it and the majority of those with it are
currently undiagnosed. The disease was identified in
1989. Before then, it was called Hepatitis Non-A or
Non-B.
An antibody test for the disease was developed in July
of 1991. That test was highly inaccurate. It was perfected
in September of that year.
Because it’s a blood-to-blood transmitted disease,
those at high risk for having it include intravenous
drug users – even someone who shot drugs only
once. But another equally high risk group is people
who received blood transfusions before the disease was
identified and blood donors became routinely screened.
Also at risk are people who snorted cocaine using a
snorting tube that had infected blood on it.
In the eighties, before the disease was identified,
people were contracting the disease at a peak rate of
200,000 new cases a year. The rate of new infections
has now slowed, reporting agencies agree, to a mere
20,000 to 25,000 a year. What appears now to be an epidemic
is really an illusion. It’s a delayed response
to an epidemic that already occurred.
A slow-moving disease that attacks and inflames the
liver, HCV is sometimes referred to as The Silent Dragon.
It often takes twenty or thirty years before the infected
person feels its fury. By then, it has been busy inflaming
the liver for decades.
Symptoms of HCV are universally agreed upon. There
may be some or no symptoms when the virus is first contracted.
If symptoms such as dark urine, the classic yellow eyes
and jaundice-colored skin, stomach pain, nausea, vomiting
and fatigue appear, they usually disappear – sometimes
for years -- leading the infected person to mistakenly
believe that whatever he or she had, is gone.
When symptoms reappear, often decades later, they may
be subtle. A general sense of malaise, just not feeling
well or up to par. Fatigue. Occasional stomach pain.
Symptoms may encroach on people so slowly they barely
know they’re sick. Quality of life may diminish
so gradually that fatigue becomes the norm.
Or people with HCV may have no symptoms at all. The
news may come in one swift blow to the psyche after
getting a routine physical exam or donating blood, then
receiving a phone call – or letter from a blood
bank – saying by the way, you have Hepatitis C.
What wasn’t clear from this morass of data was
exactly what this disease would do to me, what its course
would be – prognosis and morbidity rate, the doctors
called it. Would I die from it? Spend my life in bed?
Watch my liver blow up? Or would something else –
heart attack, old age, a stroke -- get me first?
By most accounts, about 20 percent of the people with
chronic HCV (like me) would develop cirrhosis or liver
cancer. And then die. But what about the other 80 percent?
What happened to them?
Mayo Clinic states that health experts are predicting
that HCV-related deaths will soon overtake the number
of AIDS-related deaths in the United States. On the
other hand, Mayo reassures people with HCV that “Even
so, your chances of survival are high. Right now, more
than 95 percent of people with HCV survive.”
What also confounded me was the cure.
Pharmaceutical companies and many of the national Hepatitis
organizations are rallying around what they call a new
gold standard in HCV cures, a drug called Peg Intron
(by Shering) or Pegasys (by Roche) used in combination
with Ribavirin. They insist this drug combination is
a welcomed follow-up to what has been the only FDA-approved
treatment until now, a drug called Interferon.
But the more closely I looked, the more confused I
became. Interferon, Peg Intron, and Pegasys were all
the same drug. Peg Intron and Pegasys were just pegalated,
or time-released forms, of Interferon.
People with Hepatitis C hadn’t responded well,
or in high numbers, to Interferon. The success rate
claimed was small – about 25 percent or less.
And the side effects were dire, ranging from death,
depression, suicide (attempts and actual) to flu-like
symptoms, relapse of drug addiction, permanent myalgia,
respiratory problems, pulmonary fibrosis, heart problems,
and a list of other diseases I hadn’t heard of
and couldn’t pronounce. Ribavirin, the drug they
were coupling with Interferon (by any name), sounded
worse. If you were pregnant, it could kill the fetus.
It could cause bacterial infections, anemia, immune
deficiency, and more.
While pharmaceuticals are claiming a 40 to 50 percent
cure rate by combining these two dangerous drugs, other
medical experts contend that these figures simply are
not true.
“As impressive as these results appear, a majority
of HCV patients on combination therapy do not have a
50 percent chance of clearing the virus,” wrote
Michael Marco in The Hepatitis Report: A Critical Review
of the Research and Treatment of Hepatitis C Virus (HCV)
and Hepatitis & HIV Coinfection (coauthored by Jeffrey
Schouten, M.D.). “For some HCV patients, combo
therapy may be a cure but for the vast majority, more
effective and less toxic therapies are needed.”
By now, the numbers I had been given when I first learned
I had the disease had begun to make sense. The RNA PCR
measured the amount of viral activity in my body. And
the higher number, the 1,512,180 copies/ml was the number
I should use. (Both figures were different ways of reporting
the same amount of viral load using different measurement
techniques. Most people talk about their viral load
in copies.) Although anything over a million sounded
high to me, I was actually in the low to medium range
for viral activity. The other numbers, the ALT and AST
scores, measured liver function. Of the two scores,
ALT was more important. Muscle inflammation or an infection
anywhere in the body could elevate AST scores, while
the ALT was a direct reflection of what the liver was,
or wasn’t, doing.
According to my doctor, my ALT and AST scores were
in the normal range. At first that was reassuring. But
the more I learned about this disease, the more I understood
that I was approaching the high end of normal.
Other things began to make sense too. The past year,
I had become increasingly fatigued. I had written two
books, done a book tour, had a broken finger (from skydiving)
repaired, and fixed a torn knee meniscus (from hiking).
But I wasn’t bouncing back.
I had written my last book lying on the couch.
The Silent Dragon was breathing fire on my neck.
And the cure looked more dangerous than the disease.
Treatment Options
I wanted this disease out of my body. I wanted someone
to give me something and make it go away.
I didn’t want to think about my liver.
My liver became all I thought about.
I began researching the treatment options in depth.
I stumbled onto one web site, called Hepatitis C Free.
There were so many products offered, I felt overwhelmed.
I needed something easier than that.
I saw Chinese herbal remedies.
And everywhere I turned, I saw Schering and Roche claiming
the miracle of pegalated Interferon.
I began talking to people.
“Do you know anyone who has Hep C and is living
a normal life?” I asked a friend in my home state
of Minnesota. (By now I lived in California.)
“Yeah,” he said. “Me.”
“Do you know anyone with Hep C?” I asked
another friend.
“Both my wife’s sisters have Hepatitis
C,” he said. “One is treating it holistically.
She takes vitamins and herbs, does Yoga. She looks and
feels great. The other keeps trying Interferon. She
looks like walking death.”
I told another friend I had Hepatitis C.
Her eyes got wide. “You do?” she said.
“My brother has it too. He just took that new
combo drug for it. It made him go insane. He almost
killed himself and his family. Then he relapsed on drugs
and alcohol. He’s back in treatment now.”
I began meeting people who had used Interferon. Some
had been on and off it for years, with no positive results
and many side effects – going back to it the way
a person returns to a compellingly sick relationship
-- hoping that this time, it will work. I met and talked
to one person who said Interferon had cured him. I talked
to another man who said he was now on Interferon (the
new combo) for the third time, that he had experienced
few side effects, and hoped that this time, it would
work. “So far, so good,” he said.
People with HCV were all around me. I just didn’t
know about it until I started talking about it. I learned
that not only was the disease often silent, so were
the people who had it.
“You should talk to John,” a friend in
California said, when I told him I had HCV. (John –
not his real name -- is a mutual friend of ours.) “He
just got diagnosed. He started this holistic program
and the disease is almost gone.”
Yeah, right, I thought.
Everyone was touting a cure, but nobody had any proof
– including the pharmaceuticals.
I decided to try a course of ozone and vitamin drips.
I couldn’t find anyone claiming that ozone and
vitamin drips had cured them, but I knew that at least
it wouldn’t hurt me. I had used ozone in combination
with vitamin drips in the past to cure a case of stubborn
pneumonia and to rejuvenate when my energy sagged. Ozone
turns into hydrogen peroxide when it enters the bloodstream.
Peroxide is good for anything.
I used so much ozone it felt like my blood bubbled
and I could taste peroxide.
Eight weeks later, I went in for more lab work. This
time, I went to a different doctor. (The doctor who
had done my original physical exam recommended that
I see someone more familiar with HCV.)
“Why are you here?” the doctor asked.
“I’ve been treating myself holistically
and I want to check my HCV viral load and my ALT and
AST scores,” I said. “Would you please draw
my blood and do that?”
The doctor reviewed my medical history form, the one
I’d filled out in the waiting room.
“You skydive,” he said. “Why do you
care if you have Hepatitis C?”
I wanted to say that if the risk/benefit ratio in skydiving
was as lousy and lopsided as it was with Interferon,
I wouldn’t be jumping out of planes. I wanted
to explain to him that if I had a less than fifty or
twenty-five percent chance of having any enjoyment from
a skydive, and an extremely good chance on each jump
that I’d be hurt, permanently injured, or killed,
I’d take up bowling. I didn’t.
“I care that I have this disease,” I said.
“Besides,” he said, “we should just
schedule a liver biopsy for you, then get you started
on the treatment.
“I’m not going to do that,” I said.
“Oh you’re worried about the side effects,”
he said. “No reason to worry.
We’ll just put you on antidepressants then you
won’t get depressed.”
“I’m not taking Interferon,” I said.
“And I don’t want antidepressants. Please
just draw my blood.”
“You aren’t drinking that Milk Thistle
tea, are you?” the doctor asked, almost as an
afterthought.
“Oh no,” I reassured him. “I’d
never do that.”
It wasn’t just me who found the data confusing
and the medical profession’s push to use Interferon
irritating. “I quickly realized that people with
HCV were not the only ones who needed to become experts,”
wrote Michael Marco in his introduction to The Hepatitis
Report. “I found that many primary care physicians
lack a complete breath of knowledge of the epidemiology
and clinical management of HCV.”
Marco also wrote that a reason for writing the report
was “an attempt to quell the mass hysteria about
HCV created by major weekly news magazines as well as
by the obnoxious ‘get tested, get treated’
HCV advertising campaign of a greedy pharmaceutical
company.”
Marco is Director of Treatment Action Group’s
(TAG) Infections and Oncology Project, the author of
TAG’s the Ol Report, The KS Project Report, The
Lymphoma Project Report, and editor of TAG’s the
Wasting Report. He’s also a member of the NIH
Office of AIDS Research’s Therapeutics Research
Working Group, the National Cancer Institute’s
AIDS Malignancies Working Group and AIDS Malignancies
Consortium, the USPHS/IDSA Prevention of Opportunisitic
Infections Working Group and a consultant to the FDA’s
Oncologic Drug Advisory Committee.
“The push to immediately treat everyone who tests
positive for HCV made my blood boil … ”
Marco wrote.
The numbers that had been so confusing to me in the
beginning now became important milestones as I waited
for the results. My liver scores came back in a few
days. They were down a little, but not much.
I waited four more days, staring at my liver the entire
time.
Finally, the doctor’s office called.
“Your viral load is 1,500,000 in copies,”
he said. (I later learned that although he had rounded
the number, he was only a few numbers away from being
exact.)
I hung up the phone. After all that ozone, my viral
load was almost exactly the same. Ozone wasn’t
working.
I had to find something else.
I went back to the web site called HepatitisCFree.com.
I wasn’t going to blow this disease out of me
in a month, or even two. I was going to have to work
at it, and with it. Within three days, I was staring
at boxes of supplements and teas. My freezer was full
of little frozen vials of something called Natcells.
The program cost money. It was going to take work,
time, and energy.
Although the man who ran Hepatitis C Free, Lloyd Wright,
said he had cured his Hepatitis C by following the treatment
regime he recommended, I wasn’t sure it was going
to work for me.
That’s when I learned that this was the program
that my friend John had used to begin curing his HCV,
the man our mutual friend had told me I should talk
to months ago. Although John had a much lower viral
load than mine, and had HCV fewer years than I had,
in just two months the Hepatitis C Free regime had almost
eradicated John’s virus, John said.
I had my first glimpse of legitimate hope.
The Regime
I liked the way the teas smelled, from the first time
I simmered the herbs on the stove.
Milk thistle regenerates the liver. Dandelion helps
clear the blood of any toxic buildup from the liver
not doing its job. Reishi Mushroom Tea powers the immune
system. Hyssop energizes and purifies. The odor from
Licorice Root, a potent anti viral, filled the house
with its sweet smell.
Cat’s Claw is just plain nasty, but I started
drinking two cups of it at bedtime anyway. It’s
a tea that other cultures say reverses deep-seated pathology.
Whether that’s true or not, it helped me fall
instantly asleep.
Friends became used to seeing me pull a Tupperware
container out of my purse and swallow a handful of pills
from a sandwich-sized baggie before and after meals
– whether I was meeting them for breakfast, lunch,
or dinner.
“That’s a lot of pills,” my daughter
said, watching me gulp them by the handful.
I nodded my head. I couldn’t talk. I had 12 pills
in my mouth, trying to swallow them, and another 12
on the way. Vitamin B’s – all the B’s.
Milk Thistle capsules, Dandelion Root capsules, Reishi,
Thymus, Adrenal support, Moducare, NADH, Lypotrope,
and more. Every supplement Lloyd said he took that cured
his HCV, I took.
If I was going to do this program, I was going big.
I was furious about having to work this hard at taking
care of my body. It took me hours just to sort the pills
into the baggies so I’d have each day’s
supplements in a container at the beginning of the day.
But I knew if I didn’t count the pills and arrange
them so it was convenient to take them, I wouldn’t
do this program with the dedication it required.
I didn’t mind the beverage I made each morning
– a nasty looking combination of aloe juice, high-powered
greens, mega doses of coral calcium, and super doses
of liquid C plus a sprinkle of even more Milk Thistle
powder. From the first time I drank the slimy muck,
it gave me an energy that I hadn’t felt or experienced
in years. And if I added pineapple juice and a banana
to the blender, it actually tasted good.
The most disruptive part of the new Hepatitis C Free
regime was the Natcells. I had to take a couple frozen
vials of adrenal, liver, thymus, or mesenchyme (alternately)
out of the freezer first thing in the morning, thaw
them by holding each in the palm of my hand, hold the
contents of each one in my mouth for five minutes, then
do the same with the next. I couldn’t eat or drink
anything before I did the Natcells and I couldn’t
eat or drink anything – couldn’t even brush
my teeth – for half an hour after taking them
or else they wouldn’t work.
That meant no steaming hot cup of coffee first thing
in the morning. It meant waiting another half hour after
swallowing the Natcells before coffee.
But from the first morning I held this clear liquid
in my mouth for five minutes, I felt an energy and an
invigoration I hadn’t felt for years.
I was irritated by all the work, frightened by all
the expense. I had worked doubly hard the year before
to build up a financial cushion so I could write a fiction
book the coming year. Now, all the money I had saved
was going for supplements.
I didn’t want to have to work this hard at taking
care of my body, especially my liver.
But whether I was happy about this labor-intensive
Hepatitis C Free regime, my body was. From day one,
I could feel it responding positively to what I was
doing.
You’d spend this much money on a house or a car,
I kept telling myself. You’d spend this much money
on clothes or furniture. Isn’t your body more
important?
“Lloyd, this is expensive,” I complained
regularly.
“I know,” he said.
“Lloyd, this is a lot of work. A lot of work,”
“I know,” he said. “Just keep putting
good things in your body.”
“Lloyd, show me your lab work. I want to see
proof that you actually cured your Hepatitis C,”
I finally said.
He pulled out the paperwork and showed me the numbers.
At least once a week, I made Lloyd tell me his story
again, even though I’d already heard it –
and read it in his book Triumph Over Hepatitis C. He
was an avocado farmer. Got injured in a tractor crush
accident in the seventies. They gave him blood transfusions
at the hospital. The blood was tainted, contaminated
with Hepatitis C. Neither he nor the doctors knew it.
Hepatitis C hadn’t been identified yet. Ten years
later, Lloyd found himself unable to build houses, or
farm. He’d show up on a job site, then sit down
on the ground and wonder what was happening to him,
why he couldn’t get up.
The doctors didn’t know what was wrong.
In 1991, he got tested for HCV, after the virus was
identified.
The problem was, the test they used was the first test,
the one that was highly inaccurate. Lloyd tested negative
for HCV.
Later on, after that test was perfected, he went back
in for retesting.
He tested positive.
Now he knew why he sat on the cement stoop at job sites
and couldn’t get up.
“My experience with people with Hepatitis C is
that they can’t get out of bed,” Lloyd said.
“And if they do, it’s just to go lay on
the couch.”
The doctors started Lloyd on Interferon.
“I went insane,” Lloyd said. “It
affected my mind, my muscles. I was a carpenter. I couldn’t
saw wood in a straight line.” Lloyd showed me
his carpentry work, wood lining the walls inside his
cabin-type Southern California home which has now been
turned into a ‘round the clock Hepatitis C Free
clinic.
“That’s before Interferon,” Lloyd
said, pointing to cedar strips perfectly cut and mitered.
“That’s after Interferon,” he said,
pointing to wood strips that had jagged, uneven edges.
“The doctor told me I’d have flu-like symptoms
from Interferon,” Lloyd said.
“What the doctor called flu-like symptoms kept
me in bed, curled in the fetal position, wishing I was
dead.
“I was homicidal,” this gentle man said.
“And I’ve been permanently damaged.”
When Lloyd realized that Interferon wasn’t working
for him, wasn’t the miracle cure that doctors
proclaimed, he stopped taking it and began working with
a holistic doctor, Dr. Finnegan. Finnegan is now dead,
but he pointed Lloyd to a course of supplements, frozen
Natcells, teas, aloe juice, and powdered greens that
changed Lloyd’s life.
And cured his Hepatitis C.
“This is expensive,” Lloyd complained to
Finnegan.
“I know,” Finnegan said.
“It’s a lot of work,” Wright said.
“I know,” Finnegan said. “Just keep
putting good things into your body.
Lloyd begged, borrowed, and sold everything he owned
to pay for his supplements. Eighteen months later, his
lab work showed that he was now undetectable for Hepatitis
C. A few years later, he wrote a book. Triumph Over
Hepatitis C tells Lloyd Wright’s story, and offers
the recipe he used to cure HCV. Lloyd put up a web site
to advertise his book. But instead of just wanting to
read Lloyd’s book, visitors to the web site wanted
to buy the cure. And they wanted to buy it from Lloyd.
That’s when he opened his online alternative
medicine Hepatitis C Free pharmacy.
Each weekend, Lloyd gets hundreds – sometimes
thousands – of emails. Many people are just inquiring,
passing by like I did my first time around his website.
“Most of the emails I get are from people who
used Interferon, realize it’s not going to work
for them, and want to know what they should do,”
Lloyd said. “Sometimes the person with Hepatitis
C writes me. Usually they’re so sick from Interferon
it’s the spouse writing or calling me. People
are scared, really scared to not do what their doctors
tell them to do – even if what their doctors tell
them to do isn’t working.”
Lloyd patiently answers each email himself, the same
way he responds to my emails. He answers questions about
viral load counts, AST and ALT scores. He describes
his supplements. He listens to people complain about
the amount of effort it takes. He tells his story, over
and over. He shares other people’s stories, people
who have also eradicated the disease by using this holistic
regime. If people don’t have enough money to get
the full program, Lloyd recommends a lesser program,
one that will at least help them live with the disease,
regenerate the liver, and have enough energy to get
out of bed or off the couch and return to work. And
when someone has no money, Lloyd sends as many free
products as he can.
A quick review of just one weekend’s emails shows
why Lloyd is fanatical about people not using Interferon.
He sees the fallout from the medical community, the
failures.
Lloyd doesn’t just sell supplements.
He deals in hope.
“Why so many products?” people ask Lloyd.
“What’s the one part of your program that
I can take, the key, the magic bullet?”
“There isn’t one,” Lloyd says. While
the pharmaceuticals claim that the synergistic effect
from the two side-effect laden drugs, Ribavirin and
Peg Intron, are just what the doctor ordered, Lloyd
makes the same claim about the supplements, teas, greens,
aloe, and Natcells – none of which have any negative
side effects.
“It’s the synergistic effect of all the
ingredients working together,” Lloyd says.
The Hepatitis C Free program is four-fold. It bolsters
the immune system. It supports the glandular system
– especially the thymus, pancreas, and adrenals.
It regenerates the liver. And it attacks the virus.
“The people who get better, who cure this disease,
are the people who drink the teas,” Lloyd insists.
If anything is the key, it’s the teas. The teas
unlock a door in the body that allow the other ingredients
to work.
The month before I started the Hepatitis C Free program,
I received a phone call about Nate (not his real name),
an old friend from Minnesota – someone I had shot
drugs with, lived with, then got into recovery with
in the early seventies. I learned that Nate had been
diagnosed with HCV. He went the pegalated combo route,
a decision his doctor made.
After the third injection, his respiratory system failed.
He was rushed to the emergency room, where doctors
induced a coma, then put tubes down his throat to help
him breathe. Almost one month later, about the time
I started on The Hepatitis C Free program, the doctors
pulled Nate out of his coma.
He was alive, but he couldn’t lift his head off
the pillow. And now, besides having HCV he had pulmonary
fibrosis, an incurable medical condition listed as a
side effect of the pegalated Interferon.
I loaded my car with the teas, the supplements, and
the little frozen vials (which I packed in dry ice)
and headed for Minnesota. “Looks like you’re
carrying around a body organ,” a clerk said, when
I purchased fresh dry ice and repacked the cooler.
I wanted to tell him I am – it’s my liver.
After arriving in Minnesota, I sat in the hospital
room with my friend, remembering all the times we’d
shared together – the drug using days, the recovery,
and now the Hepatitis C. Over the next three months,
I returned to Minnesota monthly. I watched Nate fade
while my strength increased daily.
I tried to share my new-found program with him. It
wasn’t too little, but it was too late. He didn’t
even have the energy to swallow the pills or drink the
teas.
“If I had known and understood that Pegasys would
really do this to me, I would never have used it,”
Nate said, right before he died of kidney failure.
“I knew, some part of me really knew, that I
shouldn’t use that drug. It was like injecting
poison into my body.”
In the really fine print about Interferon (or Peg Intron
or Pegasys), hidden deep in pharmaceutical jargon, the
diligent reader discovers that new side effects can
occur months after a person stops taking the treatment.
My irritation and annoyance at the expense and hard
work this holistic program required turned to gratitude
and determination. I was climbing a mountain, and would
just have to keep putting one foot in front of the other
until I reached the top. I still didn’t know if
I was eradicating the virus. What I did know was that
my energy had skyrocketed. My body felt thirty years
younger. And the program that was so overwhelming in
the beginning was now habitual.
I felt uncomfortable if I couldn’t brew my teas.
I felt a twinge of anxiety if I forgot to take my supplements.
And I could wait an hour after I woke up for my coffee.
The first thing I wanted in the morning was my Natcells.
That strange organ the liver was no longer something
disassociated from me, a glob of meat waiting for a
doctor to fix it. It was part of me, an important part.
It cleared toxins. Turned food into fuel. Gave me energy.
“It’s not that I’m afraid of dying,”
I kept telling Lloyd. “I know I’m going
to die someday anyway. What I’m afraid of is spending
years laying around with no energy, no passion, and
no life force.”
Friends and family noticed the difference in me.
My constant talking about Hepatitis C annoyed them.
But even my daughter had positive comments.
“If nothing else, I admire your persistence and
dedication,” she said. “I’ve watched
you just keep doing your program, no matter what.”
Instead of resenting my liver for being sick, I started
taking care of it.
Love your liver became my theme.
“A diagnosis of HCV doesn’t necessarily
mean you’ll need treatment,” proclaims the
Mayo Clinic. It lists the National Institutes of Health
(NIH) treatment recommendations for HCV: positive RNA,
a biopsy indicating liver damage, elevated ALT scores.
“Even so, doctors continue to debate who needs
treatment,” Mayo explains (treatment meaning Interferon
by any name.) “If you have only slight liver abnormalities,
your doctor may decide against medical treatment because
your risk of developing a serious disease is slight
and the side effects of treatment can be severe.
“On the other hand … no foolproof way …
your doctor may decide ….”
While I found many of the web sites about Hepatitis
C helpful, something about statements like that bothered
me.
“Physicians and patients must carefully weigh
the risks (which are clinically significant in the case
of treatment with interferon alfa-2b and Ribavirin),
the benefits (moderate in this instance), and the cost
(substantial in this instance) of any treatment option
for a disease that has emerged as an important public
health problem,” wrote T. J. Liang in the New
England Journal of Medicine in 1999.
Physicians and patients must carefully weigh this,
Liang wrote.
I finally understood what bothered me. It was reading
or hearing the words, your doctor may decide.
Our course of treatment isn’t our doctor’s
choice.
It’s ours.
Results
At the end of March 2003, I went in for new lab work.
By now, I had been on the Hepatitis C Free program for
nine weeks. While I had to take a course of antibiotics
during the program (something that Lloyd insists will
make the viral load go up), I had done the program diligently.
I felt great, better than I had ever felt in my life.
I slept soundly at night and six or seven hour’s
sleep was an adequate amount of rest.
I was working out again.
My mind was clear.
I was writing, skydiving, and traveling while taking
supplements, thawing frozen things, and brewing teas.
I was still emailing Lloyd daily, complaining about
all the hard work and begging for reassurance that my
liver wasn’t going to explode. Lloyd was still
patiently emailing me, insisting that my liver was doing
fine and suggesting that perhaps I might feel better
if I stopped obsessing.
The week I waited for the test results was brutal.
Within three days, I received my AST and ALT scores.
My AST
was 29.
That’s good, I thought. Twenty-nine is right in
the middle of normal range.
My ALT
came back at nine.
I looked at the number. A single digit. This score,
the truly indicative number for liver function, had
been at 49 when I was diagnosed with HCV. Now it had
dropped to a single digit number? I called Lloyd.
“A nine?” he said. “I’ve never
heard of anyone getting that great of a reading –
even me.”
I was encouraged, but scared. The true barometer for
me would be the viral load reading. While it was reassuring
to know that my liver was happily functioning, I wanted
to know how active the virus was in my body, and if
all these teas, frozen Natcells, supplements and green
slime were actually doing my body any measurable good,
other than making me feel better and more energized.
I waited. I obsessed. I called Lloyd twice a day.
“Do you think the lab would mind if I just went
over there and sat on a stool next to the test?”
I asked. “I could ask the technician to recheck
it every hour, just to see how it’s progressing.”
A week later, my fax machine ticked out a fax from
my doctor’s office. By now, I had found a new
doctor, a naturopath. She oversaw all my lab work. She
didn’t pester me to do Interferon, or the combo.
She had straightened out my hormones. (I was taking
estrogen, but Lloyd had said that women who had a hysterectomy
or were taking hormones had a hard time kicking out
the virus. He had said that women’s hormones need
to be perfectly balanced in order to cure the virus.
Dr. Metcalf had immediately identified this problem,
adding a daily dose of natural progesterone and two
other estrogens to my daily regime.)
I looked at the fax.
The first number, the HCV RNA PCR
number that had been 756,090 iu/ml in November 2002
was now 371,290.
The important number, the measuring stick for viral
activity, the one that had come in at 1,512,180 copies/ml
in November 2002 and again at a rounded out 1,500,000
in January 2003, was now 742,580.
In nine weeks my viral load had dropped in half.
I was encouraged about my viral load. I was thrilled
about my ALT. But I was still stuck at the halfway point,
climbing a mountain I didn’t want to climb.
I intend to get retested for viral load in August,
when I return to California. (I’m summering in
Minnesota while my home is being rehabbed.) And right
now, I have to go drink some freshly brewed Milk Thistle
tea.
Watch for an update.
Melody
Melody
Beattie |
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