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Greetings, fellow PN Sufferers. I am posting here what
I believe are the current theories about what is the true cause of PN. This
is by no means a complete list, and I am not offering any conclusions here.
My purpose in doing this is it helps me to stay organized and gives me some
paths to explore as I fight against this belligerent disease. Please feel
free to add anything and everything that you consider to be of value to this
list.
===Skin
This is the most obvious suspect, that something bad has happened to our
skin, so we treat it with lotions, ointments, creams, injections and Ultra
Violet light. But as we all so sadly know, none of us has gotten 100% better
through this approach alone. We do get some relief, but we have not been
cured by treating just the skin alone.
===Nerves
There seems to be some support for this, since the sensation of itchiness is
caused by the nerves sending an exaggerated signal to the brain. That is why
Zostrix or Capsaicin is prescribed; to deplete something called “Substance
P” that the nerves use to send their itchiness signal.
===Virus or
Bacteria
Some of our sufferers think our disease is caused by a virus or bacteria,
since they report having high levels of H. Pylori bacteria. Unfortunately
others of us have been tested for little or none of this bacteria at all.
There may very well be a virus at work in our bodies, but at this point this
is unknown.
===Insect
Bite
(09-03-03)
There is some evidence that PN started from an
insect bite. Some of the posts here are from people who clearly identified
they were bitten by mosquitoes, and then within a couple weeks, they had PN.
I find this to be pretty convincing evidence, especially concerning
mosquitoes. In my case I got PN in January 2000, but I can't pinpoint any
insect bite. However, we definitely have fleas and mosquitoes at our house,
and it would only take one bite of a disease carrying insect to infect me.
Unfortunately, from the discussions I have read on this board, most of us
can't point so clearly to being bitten by an insect, so we don't know this
for sure. If it does prove to be true that insect bites are the source, then
we can know for sure that a virus or bacteria is the root cause of our
affliction
===Diet
Some of us report particular foods or drinks that make us worse. Flare-ups
have been reported from alcohol and shellfish. Some of us suspect yeast and
wheat products, so we go on the Candida diet.
===Internal Organs
Sometimes internal organs become diseased and they expel toxins through the
skin. Some of us suspect that a diseased liver is the actual source of the
rashes and bumps that appears on our skin. Therefore, treating the skin is a
losing battle; instead, we need to be treating our liver with proper
medications.
===Immune
System
Very itchy skin is one of the symptoms of those who have weakened immune
systems, such as HIV sufferers. To get better, then, we would need to
substantially boost up our immune systems. As a result, many of us are
taking dietary supplements or getting intravenous treatments designed to
strengthen our immune systems.
(09-03-03) One of
our PN members reported here that she got MUCH BETTER ironically when she
got sick! In
fact the improvement was so dramatic, she was able to wear shorts and a tank
top within one or two days later. Wow! There was quite a bit of discussion
on this board about this, and the convincing theory is that her getting sick
actually weakened her normally overly agressive autoimmune system. Since her
immune system had to go off and fight against the sickness, it left her PN
bumps alone, causing her to have literally overnight improvement in her PN
condition.
In addition, Jan has been singing the praises of
Protopic
ointment, and the main purpose of that medicine is to surpress the
autoimmune response. Jan has seen wonderful improvement this past year using
it, and I have also seen great improvement in myself, even though I only
just started using it a week ago. As a result of these incidents, my vote is
that PN is probably an autoimmune disease.
(May 12, 2003)
The Mexico clinic That Tanya went to focuses it's
treatment on doing just this, so this is obviously an area that most of us
might want to focus on in our treatment plans.
===Environment & Toxins
Some of us are exploring the idea that our bodies have become toxic through
such things as the mercury in our metal fillings in our teeth or a build-up
of lead in our systems. Or it could be chlorine in our drinking water, or
preservatives in our modern processed foods, or pollutants that we are
breathing in our industrialized air that is doing this to us. However, the
people who live around us aren't getting this disease, so environmental
factors alone is not the likely cause.
===Psychosomatic
After reading through all the postings here on this board, it appears to me
that NONE of us PN sufferers think we are causing this disease and doing it
to ourselves. However, it appears that MANY dermatologists think our disease
is just psychosomatic; that we are causing our own disease. Many of us have
been scolded and told that “If you don’t scratch, then you will get well.”
We have been told the reason we have bumps on our bodies is because we
scratched FIRST, and thereby we irritated our skin, which then caused the
terrible bumps to appear. Quite a few of us have had our derms refer us to
psychiatrists to treat the “mental disorder” which they consider to be the
true source of our disease. But don’t you believe it! Not one person on this
board has posted that they were cured by seeing a psychiatrist.
===Stress
Some of us have been told that stress is the cause of our disease. However,
this appears to be a copout on the part of frustrated derms. I think it is
safe to say that EVERY ONE of us now has a substantial amount of stress in
our lives from having to cope with this awful disease. However, there are
tens of millions of stressed out Americans, and they don’t have this
disease. And in my own life I got this disease at a time when my stress was
quite low. No doubt past stress in our lives weakened some of our body parts
or immune system, which then allowed this disease to get a foothold, but I
just don’t buy it that stress ALONE is the source of our itchy bumps.
===Parasites
(May 12, 2003) I
added this category because my first derm tested me for this, so apparently
miniscule parasites can produce some of the symptoms of itchiness and bumps
that we all suffer from. What he had me do was smear an anointment all over
my body from feet up to my neck for one evening. Nothing came of it, so he
didn't go any further down this path. It's probably a huge longshot that
this is the source of PN, but I mention it here so nothing gets overlooked
in a search for a cure.
===Scratching
(Aug 03, 2003)
Many of us PN sufferers have been told by our derms that we are CAUSING our
own disease by our scratching.
I say Rubbish!
You can read a pretty extensive discussion about scratching from our varied
experiences under the thread "Dermatology
Conference". From what others have said here
and my own personal experience,
I strongly believe that the intense
itchiness comes first, which means something
went wrong in our bodies long before the scratching occurs.
For example, if you stop scratching, your bumps will NOT just go away. Also,
Jan posted how he had sores develop on his back where he couldn't even reach
them. Another member here did an experiment of scratching part of her skin
where she did NOT have PN, and guess what --no new bumps appeared there! In
addition, years ago I would be attacked by fleas from our cats, and even
though I scratched furiously, I NEVER developed the persistent PN bumps that
are now scattered over most of my body.
===Vaccinations
(Sept 09, 2003)
There is a growing controversy in the medical community that vaccinations
are actually more harmful than good. Some of the ingredients in a
vaccination shot are pretty toxic stuff, so the finger of suspicion is now
being pointed at the possible harm these shots are causing. As a result, it
only makes sense for us PN folks to ask whether one of those toxic
ingredients has produced in our bodies the PN we hate so much. You can read
some of the discussions about this on this board, and since many of us are
adults who haven't had vaccinations for 30 years or more, my vote is NO,
this is not the cause of our disease. But as Dennis Miller the comedian
likes to say in his rants, "I could be wrong."
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