Wilkie Wages War: March 7, 2006

Environmental Health Network leader Barbara Wilkie discovered in July 2005 that her chemical injury/multiple chemical sensitivities had suddenly manifested as stage 4 (later stage 5) kidney disease (kidney failure). Despite dire warnings of death within a year, she eschewed dialysis and Western Medicine drugs and took a route of alternative medicine, Traditional Chinese Medicine, and strict dietary changes. She lived well for six years, far beyond the doctors’ predictions.  Barb died at home, surrounded by friends and family, on May 31, 2011.

During this time, Barb documented her journey. From diagnosis through June 2008, she created one huge website page packed with details, plus some side documents on diet and other topics.  We have divided these works into smaller pieces, by date or topic, to make it easier to read and find things.  For dates after June 2008, we have letters, online posts, and other documents.

Barb intended her work to be read and used. We hope this presentation will help you do just that.

Wilkie Wages War on Kidney Disease
(aka Renal Disease or Failure)

OR, AS I SEE IT: Life with yet another facet of living with MCS.
I want to live life while dying.

March 7, 2006

Well, I’m preparing for the fact that the Kaiser nephrologist may be correct and I’m going to
“check out,” as he put it, by the end of July 2006 if I don’t go on dialysis or have a transplant.
To even think transplant means an additional five or so years into the future after a
screening, so it seems to me, they loosely bandy about the idea of transplant.

However, I’m flummoxed by the fact that my creatinine clearance through a 24-hour urine
catch is normal, while creatinine is steadily climbing in the blood serum analyses. I still
feel great kidneywise, and still enjoy life to the extent possible considering my body is
constantly poisoned by perfumes and fragrances used by others — including staff, patients
and visitors at Kaiser. Kaiser Oakland has proclaimed to me that it is “fragrances sensitive.”
I wrote back that they were fragrance sensitizing, pointing out the obvious difference.
I never heard back.

IF you have a management team that doesn’t believe in cleaner air for all, and doesn’t put cleaner
air regulations and policies into place, please consider leaving. I suggest you leave before your
body becomes as thoroughly poisoned as mine by those superfluous chemicals such as fragrance
products, pesticides, new carpets, constant paint jobs, etc. Of course, finding a job in a workplace
with safer air is difficult, and especially if you are an older worker. But if possible, don’t try to
educate those around you as I had, for you will only be making your own condition worse and
no one GETS IT until they too learn for themselves just what chemical injury is. That’s when
they GET IT. Then, it is too late for them, too.

For years I’ve been reminding people of the adage, An ounce of prevention is worth a pound of
cure. Now some cities, like San Francisco, invoke the Precautionary Principle. Hey, people, it’s
time you start asking yourself if a petrochemically- derived product is necessary. There are
alternatives. Get to know them while you still have a modicum of health. You’ll certainly have to
learn of alternatives once you go into the MCS abyss. The one way we can continue is to
practice avoidance. But that becomes next to impossible when you live and work where others are
still imbued with mainstream industry advertising; so much so, they feel they HAVE to use
artificially flavored and scented products.

You never get truth in advertising, for if there were truth, you’d learn of the harmful chemicals
you are welcoming into your body and the bodies of your offspring, from womb on. Instead of
various fragrances being advertized as if they were just squeezed flower petals and citrus fruit,
you’d be told they were cleverly crafted — derived — from petrochemicals. The industry couldn’t
tell you that petrochemically derived scents are identical to those found in nature. (These days,
I’ve improved enough that I can be around pure, steam-distilled essential oils, yet I cannot be
around petrochemically derived scents.) And you’d learn that fragrances do not clean. The
industry recognizes that, they just don’t openly tell you that while enticing you to use their
scented products. And, despite industry advertising to the contrary, there is nothing
FRESH about any man-made scent. Stop being duped.

Do you REALLY need to have these particular poisons in your life? That IS the question
you must ask yourself. Your doctors aren’t educated enough in the field of environmental
illnesses to inform you properly. IF they were, they’d sure not have their pulmonary,
kidney, cardiovascular, cancer, headache, ADD, ADHD, Alzheimer’s, Parkinson’s, etc.,
patients using fragrances. And, doctors themselves would provide an atmosphere
free of petrochemical-derived fragrances for your visits. There are safer alternatives for
doctors, staff, other patients, visitors, AND the healthcare facilities also.

The numbers via a phone call this morning (March 7, 2006) are:

Iron is OK . . . I didn’t get numbers

Fortunately, other than creatinine and BUN readings, my highs and lows are generally only a little
high or a little low. But the kidney test via the blood seems to be unforgiving. Now, why is it that
the creatinine is in the “normal range: in the 24-hour urine catch, and yet runs so high in
the blood tests? On the other hand, and not to be falsely encouraged by the good news of the 24-
hour catch, Dr. Walser writes that “Many authors have recommended that the measurement
of 24-hour creatinine clearance be abandoned. …” (Coping With …, page 147)

Ah, HA! Learned something else. I ate a breakfast before the last blood test, because we had to go
straight to another appointment. Should not have, as food going in can affect the creatinine
readings. (Walser in Coping With…, page 148: “The morning of the test, take your
medications as usual but eat either a light breakfast or no breakfast (because a large
meal changes kidney function).”) Dr. Walser also suggests that one should not test the
creatinine level without first taking cimetidine, which we know by the brand name Tagamet.

Because my body cannot handle petrochemically derived medicines any better than it can
handle petrochemically derived flavors and fragrances, I don’t take medications. Including
cimetidine, but I do take supplements.

Also, there’s information available through the Internet and through Dr. Krop’s book,
Healing the Planet — One Patient at a Time See Dr. Jozef Krop Publishes Book on Life-long
Environmental Medicine Work; October 2002, Features, By Helke Ferrie
http://vitalitymagazine.com/article/healing-the-planet-one-patient-at-a-time/

In Healing, I read information on the Thyroid Gland — for example, it is responsible for
clearance of substances from the blood. And while my thyroid has tested normal in blood tests, my
body has indicated to my acupuncturist that like so many with MCS, I live with hypothyroidism.
I could not lose weight, even with strictly curbing diet once diagnosed with kidney failure,
my body always felt cold and especially the hands (this was a drastic change
as my body had always been hot, emitting heat like a blast furnace, hair loss, and my
cholesterol had elevated — but with the low-protein diet, has dropped to normal. With my
complaint of “Can’t lose weight, no matter what — not even with kidney failure,” he had
me take my temp three days running, starting before getting out of bed, and then two
more times at three hour intervals. When I started that program, my temp was
running 94 something – 95 something. Way low . . . and from me who used to run a
steady 99.6 and always felt way too hot. In recent years, I always feel way too cold.
No happy medium! But we’re hoping to get there with supplements and herbs for thyroid
improvement.

I was on thyroid supplements in Sept. 2005 for two weeks, but because there were no
blood tests taken, we’ve no idea how I was doing. By the time I had a test in October, I’d
already been poisoned by pesticides applied to utility poles on block and in front of
home on Sept. 27 — without warning!! — and a couple weeks after that I had a major
perfume blast while napping in the car, awaiting for our grandson to awaken to go to the model trains on Point Richmond. That poisonous blast came from a mom with a brand new baby in a pouch on her stomach. Once I could again begin breathing, I’ve wondered about the health — and life — of that infant. Both episodes were respiratory
poisons, which left me dealing with sinus and lung infections. Yeppers, inhaling toxins
invariably winds up as an infection for my body to fight. Thank goodness for acupuncture!!!
I heal quicker with help from the acupuncturist and his herbs.

Now, it could be argued that I’m grasping at straws in hoping that the blood tests have been
adversely affected by hypothyroidism, but I’ve seen straws driven into utility poles and into trees,
in a tornadic wind. And believe you me, this is a turbulent ride, so why not grasp at straws?