A Beginner's Primer

Your doctor said, "You have PN". What's next? You've done a quick
search on the Internet, and now you are reading several PN
websites. You have many questions. After a quick scan of the
different topics, you now have more questions, and questions you
don't even know to ask. Take a deep breath! This article is for
you, the newly diagnosed PN newbies. Before you ask your questions
(it's normal by the way), I invite you to take some time and read my
entire website, together with Tanya's and eborg's website. You'll
find links and references to all three websites regardless of which
site you arrived at initially. You will find the collective
experiences of everyone's contributions on these three websites and
it should help to answer most of your questions.

Let's start at the beginning with the diagnosis. Unfortunately, a
wrong diagnosis is a very real possibility. PN is relatively rare,
so there are NOT that many doctors and derms who have real life
extensive experiences diagnosing PN, and still less successful
experiences treating PN. I don't totally blame the doctors and
derms because there are just not enough patients, relatively
speaking, for them to develop successful diagnosis and treatment
histories.

At a minimum after you read and understand our websites, you will be
much better prepared to question your doctor or derm. Armed with
our collective experiences, you can accelerate your understanding of
PN, and choose to be an aggressive advocate for yourself, or just
passively and blindly trust whatever your doctor or derm tells you.
The choice is yours. Choose wisely!!

There are doctors and derms who still rely on just a biopsy for PN
diagnosis when they should know better. A biopsy can exclude PN,
but NOT CONFIRM PN with complete certainty. There is currently NO
test that can completely confirm PN. But what we can do is have
several tests to exclude other possibilities, thereby increasing our
confidence for a more accurate PN diagnosis.

At minimum, your doctor should order a Blood Panel and Urinary
Hormone Evaluation with GH. These tests will help to exclude or
include other possibilities. The Blood Panel should include a
CBC/Platelets, Complete Lipid Profile, Comprehensive Metabolic
Panel, and Endocrinology (Free T3). These tests will help detect
other possibilities like Diabetes, Renal Problems, Allergies, etc.
The Urinary Hormone Evaluation with GH will help detect hormonal
imbalances, etc. By eliminating the usual suspects, you can be more
certain you have PN.

If you are quite certain you have PN, then the next question is
what's next? I've listed many of the Allopathic treatments typically
available for PN on this site. (See Allopathic Treatment article).
I've tried and failed with many Allopathic treatments because it was
just symptom coping and did not address the root causes for PN. I
suspect many of you will need to do likewise before you may be open
to Natural Healing. That's okay! My purpose is to empower you with
many options so you don't need to take unnecessary risks you may
regret one day!

My choice to go with Natural Healing was easy after the Allopathic
failures, since I feel there isn't a better option currently
available. Allopathic treatments include potentially serious side
effects, and a potential lifetime of symptom coping, as we have
members who have had PN for decades. It's debatable whether PN
increases mortality. What's not debatable is PN increases
morbidity, as it reduces one's quality of life. Therefore, these
are my main reasons for using Natural Healing, to deal with root
causes, and to end PN, since I don't want to spend the rest of my
life symptom coping. Executing the Natural Healing recommendations
herewith is the harder part since it requires some work, discipline,
commitment and patience. But, I feel it's worth it and one reason
why I share this information with like-minded people.

I gave you a list of typical Allopathic treatments on my site for
your future reference. I'm not endorsing these Allopathic
treatments, but I do realize it may be a necessary part for you to
experience. However, I do strongly warn you against using two types
of Allopathic treatments – inflammatory inhibitors and
immunosuppressants.

Inflammatory Inhibitors are drugs like Thalidomide and Enbrel.
Prednisone, Cyclosporine, and Protopic are Immunosuppressive drugs.
A simple search on the FDA and other medical websites reveal many
citations, abstracts, clinical studies and trials published about
these drugs. There are people who know about the risks associated
with these drugs but choose to ignore or accept the risk. But,
there are other people (the newly diagnosed) who really don't know
about these risky drugs, which compelled me to write this beginner's
primer. It's one thing to take a risk, fully informed of a drug's
dangers. But it would be irresponsible of me, knowing the dangers
and not bother to disclose it. New people can use this information
to make informed decisions.

Inflammation is a natural reaction to infections, injuries, allergic
reactions, and other insults to your body. There are warning signs
that something is internally and potentially externally wrong. One
should heed these warning signs, not inhibit it. Inhibiting the
inflammation with drugs, is just suppressing the warning signs, but
not really dealing with what the body is trying to tell you.
Everyday, there are people who die of heart attacks and had unheeded
signs of chronic inflammation. They did not have any typical risk
factors for heart disease, like high blood pressure, high
cholesterol, diabetes, smoker, overweight, etc. However, the
medical community is beginning to acknowledge the real dangers of
not correcting chronic inflammation as an additional risk factor for
heart disease, blood vessel diseases, and other diseases. That's
why some doctors ask their patients to get tested for inflammation
by testing inflammatory markers like C-Reactive Protein, TNF alpha,
and many more. Inhibiting inflammation is not the answer.

Immunosuppressants are the second type of drugs. Since PN share
some autoimmune like symptoms, and some PN people have autoimmune
diseases in addition to PN, the idea with immunosuppressants is to
suppress the immune system to suppress the autoimmune like
symptoms. However, using immunosuppressants is like playing Russian
roulette with your health. A strong immune system is essential to
your overall health since it protects you from bacteria, viruses,
pathogens, and may prevent cancer cells from forming. A quick scan
of the FDA site reveal people who not surprisingly have cancer,
after using these immunosuppressants. Think about this! How long
can one suppress their own immune system and still reasonably expect
it to protect them? Don't misunderstand me. I think there are
times when using immunosuppressants are necessary and preferred. If
one had an organ transplant, and is facing a life or death decision
regarding organ rejection, then take the immunosuppressant. But
using immunosuppressants to suppress PN symptoms is a classic case
of the treatment being worse than the disease.

Unfortunately, there's more. Some people mistakenly believe if they
use these immunosuppressants long enough, they can eventually end
their PN. This is not common sense thinking, but wishful thinking.
Common sense tells us that the same immune system responsible for
protecting us is the same immune system trying to scream warning
signs of symptoms to us. The sooner we heed the warning signs, the
better chance we have of a full recovery. The longer we try to
suppress or ignore the warning signs, the greater the chance for
permanent damage, and the lesser the chance for a full recovery.

Unfortunately, it gets worse. Inflammatory Inhibitors and
Immunosuppressants are for SHORT TERM uses. There are no clinical
studies, trials, or other research that can definitively conclude
these drugs are safe for LONG TERM USES. This is not surprising
because when a drug is risky even for short-term uses, taking it
long term doesn't make the drug safer, but more risky. At best, one
may or may not get some temporary symptom relief with these drugs.
But when you stop taking these drugs, can your immune system still
reassert itself? Can it still do its job of protecting you and
giving you warning symptoms? Or are there permanent damages to your
immune system? If your immune system is no longer able to generate
warning symptoms, what else is your immune system no longer able to
do?

Some feel life is a risk, and this risk is worth taking. I feel
there is a time to take NECESSARY RISK when it's your best option.
In my case, I do have better options, which makes it unnecessary for
me to use these risky drugs.

You have control of two things, your attitude and your actions. My
attitude is I feel the PN symptoms are warning signs, and a blessing
because it was significant enough to get my attention, and it gave
me a second chance to make meaningful changes in my life and
lifestyle. I realize how lucky I am because not everyone gets a
second chance, so I better make the most of my second chance and not
waste it. What actions I've chosen to take, and continue to take,
are detailed on this website. May this information help you as you
begin your journey towards true healing! Choose your attitude and
actions wisely because your results will be a reflection of those
choices.