Skip's
Story
The
idea for this site began after I had participated
for several years in the online discussion group
sponsored by the International Pemphigus and
Pemphigoid Foundation. As I searched the web for
more information on pemphigus, I realized that
most of the sites were not very encouraging, and
tended to emphasize all of the negative aspects
of this disease. What started out as an attempt
to balance that with my personal story of
remission has grown to include stories from other
people in remission as well. Not all of them
followed the same path that I took, but their
stories are just as important, and need to be
told for the sake of anyone who suffers from
pemphigus or pemphigoid.
I
came down with my first symptoms of pemphigus in
November, 1994, just two weeks before
Thanksgiving. I didn't know it at the time. It
started out as a mild sore throat, but by
Thanksgiving Day, my mouth had begun to fill with
blisters and raw spots that were so widespread
and painful that I was unable to eat anything
solid.
After
a biopsy and consultations with several
specialists, I was diagnosed a month or so later
with pemphigus vulgaris, a variation of
pemphigus that mainly affects the mucous
membranes. I came under the care of a
dermatologist who would guide me through the next
three years of treatment for this very painful
and stubborn disease. His first step was to put
me on 20 mg of prednisone, and 100 mg of Dapsone,
per day, which turned out to be much too
conservative, and did nothing to relieve the pain
or stop the blisters from spreading in my mouth.
It got to the point where I stopped eating solid
food altogether, and could only tolerate bland,
liquid formulas, soups, baby food, and
occasionally, a cup of yogurt.
By
the end of March, 1995, my body and mind were so
exhausted from dealing with the pain, going
without food, and being unable to sleep, that I
was losing hope of ever getting back to normal
again. I had become delusional, thinking that my
body was filled with toxins that needed to be
"flushed," and I tried fasting as a
last resort. That only made things worse. I had
already lost 41 pounds, and was so malnourished I
could barely get out of bed, and spent the better
part of the next two weeks curled up in a fetal
position, trying to get comfortable, and getting
up only to go to the bathroom, take a shower, or
to join my family at night. There were brief
moments, lying alone, when I felt as if I was
leaving my body. I had a near-death experience as
a child, and again as a young adult, so I knew
that feeling. I was letting go, and drifting into
another world, and I didn't care. In fact, I
think I would have welcomed the relief from the
pain, and the sense of peace that was coming over
me.
My
wife had become so alarmed at my condition that
she and my sister contacted the dermatologist and
insisted that I be hospitalized. He hadn't seen
me for over a month, and wasn't aware of how far
I had slipped. He agreed to admit me to the
dermatology unit at Yale-New Haven Hospital,
where I was put on 80 mg of prednisone, 100 mg of
Imuran, Percodan and a time-release morphine
capsule, MC Contin, for pain. Because these drugs
come with a number of side effects, I was also
put on Compazine for nausea, Carafate to prevent
stomach ulcers, an anti-bacterial rinse, stool
softeners and laxatives to prevent constipation,
and told to "swish and spit" with
Lidocaine before each meal. Within three days, I
was strong enough to go home, hopeful that my
life would turn around again, but it would be
several years before I was finally able to get
control of my symptoms and enter into what is now
a 12-year remission.
After
I was released from the hospital, my treatment
plan called for me to continue taking prednisone,
at 80mg, until new blisters stopped forming, and
then to taper it down very slowly, in increments
of 10-20 mg every other month. Each time I tried,
I flared up again. Over the next two years, I was
not able to get below 20 mg, and it seemed like I
was always in pain, and still having difficulty
eating and sleeping. The side effects of the
drugs had begun to take their toll, and it felt
as if I had lost my "6th sense," and
didn't know how to take what people were saying.
I didn't understand the subtleties of what was
being said, and had lost my ability to read
between the lines, or to intuitively know when
people were joking, or when they were serious. I
became depressed and angry, and during the worst
moments, considered my situation hopeless and not
worth living for. But there were also times when
the higher doses of prednisone would have the
opposite effect, and I would feel elated, and
extremely happy with my life, even though the
burning sensation inside my mouth was a constant
reminder that I was still very sick.
Back
in the 70's, I had worked as a clinical
psychologist in an adolescent treatment program
in Dayton, Ohio. My specialty was childhood
schizophrenia, and I became very interested in
the theories of Dr. Abram Hoffer, and Dr.
Humphrey Osmond, two psychiatrists who were
experimenting with the use of vitamin B3 to treat
schizophrenia.
When
we are faced with a stressful situation,
adrenaline is released in the body, causing a
"fight or flight" response. The source
of the stress does not have to be a physical
danger. It can be something as simple as a heavy
work schedule, lack of sleep, or anything that
touches our nerves, and can become "chronic
stress" when it occurs on a daily basis.
Over the years, chronic stress can lead to an
automatic response beyond our control, and
serious psychological and physical disorders can
occur. When facing a stressful situation, we
either fight back, identify the source of our
stress, and stand up to it, or we turn inward,
run away, and put off dealing with it to another
day. Whatever our response, it is almost always
accompanied by the sudden or prolonged release of
adrenaline. In the case of schizophrenics, the
adrenaline released under stress converts to
adrenochrome, which is known to cause
hallucinations. Since schizophrenia is considered
to be a perceptual disorder, in that the
schizophrenic "sees things" that are
not there (hallucinations), and believes things
that are not true (delusions), Hoffer and Osmond
searched for a natural compound that would
interfere with the production of adrenochrome.
Dr. Hoffer, who is not only a medical doctor
trained in psychiatry, but also a biochemist,
knew that niacinamide is capable of blocking the
conversion of adrenaline to adrenochrome. He and
Dr. Humphrey began administering large doses of
B3 to their patients in Saskatchewan, with great
success.
After
joining the online discussion group sponsored by
IPPF, I was surprised to find that one of the
treatment programs for pemphigus also involves
the use of niacinamide. Usually, 500-1000 mg of
niacinamide is prescribed, 3 x day, along with an
antibiotic from the tetracycline family. It is
always the amide form of niacin that is used.
Since pemphigus is often referred to as "a
stress-related" illness, could it be that
the release of adrenaline in our situation is
also converted to adrenochrome, or a similar
compound, causing the immune system to "see
things," and to attack healthy tissues and
cells?
By
1997, after two years of living with pemphigus, I
was determined to get back on my feet again, and
willing to try anything. I knew that I
needed prednisone and Imuran, but I was also
hoping to find something to add to my routine
that might improve my overall health, and help to
put this disease behind me. I remembered what I
had learned as a psychologist, and how I had
experimented with Hoffer and Osmond's vitamins
myself, twenty-five years earlier. I had taken up
to 1000 mg of niacinamide, the same amount of C,
100 mg of B1, 100 mg of B6, and 200 IU's of E, 3
x day for years, just to see how it would effect
me. I did feel much stronger and more energetic
on the vitamins than I did when I would go off of
them, but the major benefit, as far as I could
tell, was that I seemed to think more clearly, as
if the oxygen I was breathing was going straight
to my brain. If I hadn't experimented on my own,
back in the 70's, I might not have thought to go
back on the vitamins when I had pemphigus.
Knowing they couldn't hurt me, and were not
contraindicated by either prednisone or Imuran, I
started taking large doses of niacinamide again,
along with C and the other vitamins, and waited
for a miracle.
After
several months, despite the positive effects on
my over-all health, my blisters were no better
than when I had started, and I wasn't feeling the
kind of changes I had expected. I began to
research the healing process, trying to
understand how the body deals with wounds and
open sores, and discovered that zinc was used by
many burn units across the country to treat
severe burn injuries, and also to speed the
healing of open wounds. It seemed to me that the
blisters in my mouth were very much like burns.
It was the same kind of pain, and they were
definitely open wounds that never seemed to heal.
Adding zinc to my vitamin routine seemed like a
logical thing to do, so I bought a bottle of
Solgar's "zinc 22," and began
experimenting again.
When
I was younger, I was in the habit of writing in a
journal, so by the end of 1997, I ended up with a
very detailed account of my experience with
pemphigus up to that point. I had written about
the usual things, how I was feeling, what was
going on around me, and my thoughts about life in
general, but I had also listed all of my
medications, and any changes that my doctor made
to my treatment plan, as well as how I was
feeling and whether or not I was improving from
day-to-day. In the process of trying to find
something that worked, I bounced back and forth
between adding zinc to my diet, taking the
vitamins just by themselves, or going without
anything at all, and I noted these changes as
well. It wasn't until I started reading back
through my journals that I saw a definite
pattern: when I had added zinc at 22mg to my diet
consistently for 3-4 weeks, my notes were always
upbeat and positive. All of the improvements
seemed to come after taking Hoffer and Osmond's
vitamins together with zinc, so I
decided to stick to that routine, and after 3
months, I could literally see the sores in my
mouth beginning to heal. I began to examine them
with a flashlight as often as possible, and was
very excited to see that they were surrounded by
a ring of white tissue that seemed to be closing
in on them. As the weeks went by, the redness at
the center of each lesion eventually gave way,
and only the white tissue remained. Within a
week, it would turn a healthy pink. I was also
mentally aware of the feeling that pemphigus was
on its way out of my body, following the same
path it had taken, but in reverse. The most
recent sores were the first to heal, followed by
the older lesions. By the end of the next 3
months, everything seemed to be under control
again. Not coincidentally, I had also managed to
taper down to 5 mg of prednisone, and went off of
it completely in January, 1998. I have not had a
single blister since then, except for a brief
flare-up in February of that year that lasted
less than three weeks, and after 11 years of
relatively perfect health, I consider myself
cured. (updated 11-25-09)