Barb Wilkie's EHN Website
Last updated 2008

EHN Board President Barb Wilkie was very ill from chemically-induced kidney disease for several years. She passed away May 31, 2011. EHN presents this site both as a tribute and as valuable information. Many links and references will be out of date but Barb's research holds up over time. We will be transferring the site page by page, with updated details, to EHN's main site. If you would like to reach an EHN staff person, please contact us directly.

Barb Wilkie's site;
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Wilkie Wages War on Kidney Disease (aka Renal Disease or Failure)

The "Low Sodium, Low Potassium, Low Phosphorus Grocery List"
provided by a Kaiser nephrologist.

This list makes a mockery of anyone living with MCS.

Just look at the synthetic flavors, dyes, creams, sugars, . . . processed food that we all
learned to avoid years ago. And just look at the types of food the doctor highlighted for
me to concentrate on ingesting. NO wonder that guy thought I'd be dead in a year. I would
have been, just on this diet alone. Not to mention the drugs he wanted to push on me.
But that tale is found in Wilkie Wages War on Kidney Disease at


August 8, 2007
The following was written by me BEFORE I learned of pH balancing and a diet of greens --
which means food heavy in potassium and magnesium, along with salt. But not just
any salt, one should use Himalayan salt -- pink salt from the Himalayan Mountains.
You can read more about this adventure by visiting my story, A scary venture:
Flying in the face of medical "wisdom"

Again, I am simply reporting what I am doing in an effort to live comfortably and feel
good with diagnosed stage five kidney disease.

Greening my diet began on June 10, 2007. I noticed a dramatic improvement in
creatinine and BUN readings, the potassium also dropped with my July 5 blood test. Four
weeks later, creatinine, BUN and potassium went up relatively little, and magnesium
dropped to a tenth of a point above high normal. Please do your own research . . .
especially IF you have kidney disease. I say: So far, this is working well for me, despite all
the dire predictions IF I ate foods high in magnesium and especially, potassium. Go figger!

Yet something that's never been explained to me -- and I never really thought of before I
started on this alkalziing diet -- is that first nephrologist, who handed me the following
"grocery list," highlighted "lemonade or limeade." Yet, everyone else at Kaiser had a fit if I
had said I had lemonade or limeade. On the current diet, I can have lemons and
limes, just not in a sweetened drink, due to the sugar becoming highly acidic in
one's body.

July 4, 2009

An update. Wonders of wonders, I'm still alive and still experimenting with my diet.

This past month I had such a hankerin' for almonds. I've been off of beans, nuts, dairy, only eaten a little fish, etc., trying to keep my phosphorus down, but it's been high for months upon months. I've noticed in the past that if I started peeing protein, it meant I wasn't getting quite enough meat, so I'd go to Red Onion in El Cerrito for one of their hamburgers. Then I got to wondering, IF that works on protein to bring me back to a "trace" reading, What if I ate some nuts this month? As I've yet to have my July test, I can only imagine.

My guess is that phosphorous will go sky high. But, what if my body has been "leaching" out phosphorous because I hadn't been getting enough and THAT is why it shows up so high in my blood? Just a question and we'll soon learn the answer.

I've done this sort of experimenting from time to time, trying to inform my Internist ahead of time when I play around with the types of foods I eat. I've experimented with foods high in potassium and also magnesium to see what and how much I can handle. It's all one living in a lab situation for me . . . there is seemingly no information on diet for people choosing to live with kidney failure, while long-term avoiding the drug and dialysis approach.

Of course, she doesn't want me drifting too far from what's sensible because too much or too little potassium and magnesium can cause heart problems. If I want to keep living, I'd best not kill myself off too soon with diet experiments. However, I've found that I can live quite comfortably with a slight rise in potassium and magnesium. Get a little too high in either one and I do notice the heart going a bit haywire.

But heavens, nothing compares with what my heart does on a good dose of someone's flagrant fragrance or the air "fresheners" that abound at Kaiser! That and oil spills on the Bay and releases from Pacific Steel Casting (we're on the eastern edge of a plume) have sent my heart into wierd poundings and beats, erratic as all get out. Now, that, my friends, IS scary.

February 2007 --

The Kaiser recommended diet. Hang onto your hats!

We ALL are stakeholders when it comes to breathing. We also are stakeholders when it
comes to the artificial flavors and dyes we are to ingest.
As with synthetic scents, just
because it is on the market does not mean it is safe to use. The tests proving the harm
haven't been done. Therefore any one making a complaint about reactions is seen as
only anecdotal evidence at best, or at worse, someone to be stultified. MCSers know.

Interestingly, many items that contain artificial dyes, flavors, sweetners and creams
appear on the following list of foods, which I was given during my first visit to a
nephrologist on July 26, 2005 (one grandchild's sixth birthday). And those are the very
foods I avoid . . . even IF high-lighted by the nephrologist as something I should
ingest. (Doctor-highlighted foods are indicated by bold face in table below.) Suffice it
to say, I generally follow the fruits, vegetables and spices part of the list and
pretty much ignore the rest. Some items listed as approved fruits and veggies, are on
other lists of foods high in something that I'm to limit. So, those I seriously limit or aovid
depending upon my body's reactions.

Doctors play by adjusting medicines; I play this game by adjusting foods. My life,
my choice. And, so far, so good. Perhaps even far better than had I listened to the four
nephrologists who wanted to put me on their standard bill of goods . . . whether I
needed those drugs or not.

Heavens, I couldn't/ wouldn't consume some of the following food when I was just
dealing with MCS, so I'm sure not going to consume those items now. What
is really amusing to me is that some of the brand-name products are alien to me.
Additionally, I've never been able to eat eggs, or drink milk and have no desire to
ever even try substitutes. What I could eat -- or would eat -- was of no interest to the
doctor. I thanked him for the list of fruits and vegetables, but couldn't seem to make him
understand that some of the other stuff, including his highlighted items, would make
me very sick. Such a battle. Why??? Hence, I've just done as I pleased . . . and in January
2007, I'm still alive to talk about it.

But the real kick in the pants, is that some stuff has been struck out by him, and others not.
For example, cookies have been struck, but not doughnuts or various candies . . . Well, if
you look at the table below, you'll see for yourself.

The cautions given on the original sheet are: "Keep in mind your fluid restriction" and
"Diabetics -- use caution for sugar intake." That's it. What fluid restriction? Amount?
Type? What??? And while I've never had diabetes, a lot of sugar is not good for the
kidneys, let alone the rest of the body, so I avoid or limit those items.

I love that line about fluid restriction, because having seen a total of four nephrologists,
I've never learned of any "fluid restriction." What I have learned is that they all want
to push me on drugs, whether my body needs a diuretic or BP medicine, or not. And
never mind that I've already had adverse reactions to steroids. What's a patient to do?

Well, my answer is that I've done research, learned about high-potassium foods
from other sources, followed an even stricter diet than the following. I also avoid drugs,
take hyperbaric oxygen therapy, seek acupuncture and chiropractic care, visit a Taoist healer
who made a change in my kidney pulses with his technique of rolling jade balls along
my body's meridians. And, I also travel this journey with my Kaiser internist and
my EI doctor from SFPMG, along with a biofeedback specialist. And, of course, the most
important part is the encouragement of family and friends. I couldn't do this without
all of you.

Should you care to learn more, you can start by looking at:

And now, August 4, 2007 -- another year past my first nephrologist's predicted "dead"line --
I still feel remarkably well. Enjoyed being with all our kids and their kids for our 50th
anniversary, and basically am able to enjoy life and keep up with my husband's schedule
of doctor appointments and tests.

I've more info to add regarding kidney disease and diet. On June 10, 2007, my husband and I
began alkalizing our diet. You can learn more about that by visiting my story, A scary
venture: Flying in the face of medical "wisdom"

The thing about alkalizing our diet, is that it turns all the kidney diet info heretofore
dutifuly practiced, upside down, on its head. I now eat AVOCADOS, GRAPEFRUIT,
KALE, etc. And, I've been doing that since June 10th and not only am I still here to talk
about it, but my numbers improved tremendously in July over June . . . and they have
pretty much held their own in August 2007.

You can learn more from Justin Schmidt in the SF Bay Area . . .
Justin Schmidt, Practicing in Oakland and San Rafael
Trained at The pH Miracle Licving Center by Dr. Robert O. Young
Member: International Microsopy Association-New Biology
Justin_schmidt -at-

Or by going to

What is really fun is to compare the renal diet from Kaiser with my new found diet for
alkalizing. No wonder I thought I'd be dead if I had fully practiced the diet given me by
Kaiser. And it is a standard kidney diet. Isn't that enough to scare one into doing one's
own research????

July 4, 2009

Still independent of drugs and dialysis! Still feeling fine. Still able to take care of hubby
and his nephrostomy tubes, grandkids from time to time, live life and enjoy the heck out
of pretty much everything I do. I am so very, very happy I chose to LIVE life while dying of
kidney failure. It's so much better for me than having gone the drug and dialysis route.
Perhaps my journey will help others make this same decision. IF you can handle drugs and
surgeries and all that entails, then for goodness sakes, listen to your nephrologist. But IF
you know that the drugs will make you extremely sick feeling and the surgery for dialysis
could well end your life all due to underlying chemical injury, then please feel
encouraged by my story.

Of course, all this hinges on the fact that my kidneys still make urine. It's just that they
don't properly clean my blood, don't send out the hormones to control blood pressure and
to encourage the body to make red blood cells. In that way, I live with kidney disease.
And it is because of my type of kidney disease that I've managed as well as I have by
avoiding drugs and dialysis thus far. Those are very important considerations. My complaint
is that nephrologists don't seem to be trained for anything but pushing drugs, dialysis and
transplant. There's no room in their lexicon for doing kidney disease my way.

Best wishes to all!
-- barb wilkie

Grocery List given me by Kaiser nephrologist
(Typos, if they exist, are mine.)

Believe you me, I did NOT use everything on this list. I followed it for the vegetables
and fruits. My underlying MCS precludes the items loaded with artificial sweetners,
dairy, flavors and dyes.

Just because the nephrologist highly recommended them, doesn't mean I consume them.
Chewing gum???? Jell-O???? And, he left in doughnuts, even if not highlighted.
Doughnuts??? Candies?????

But then, I felt he showed little understanding of MCS. When it came to handing out
this list, I thanked him for the list of available vegies and fruits but announced plainly
that I'd not touch most the artificial stuff. And, I haven't. But did he even accept my
accepting of the vegies and fruits? No. He kept talking to me as if I were balking at a
restricted diet, not at a diet loaded with sugars, cane and artificial. Not as though I were
balking at dyes, artificial creams, flavors, sugars etc. He simply wouldn't hear my
thanking him for vegies and fruits. Nope, he had his mind set. And that was that!

Of course, he's the same doctor who on July 26, 2005, said that I'd be checking out in a
year . . . and then went on to ask in his supercilious best: "You do KNOW what I mean by
'check out' don't you?" To which I replied succinctly, if not too politely, Drop DEAD!
-- barb January 5, 2007 . . . and still counting!

February 28, 2007 . . . now seven months past my "dead"line . . . and still counting and still
feeling fine. Still being told that my "clinical presentation does not match my numbers."

Below, I've indicated the items struck by the doctor and also those highlighted by the
doctor (bold). Something else that struck me as strange, is that it was OK for me to
put artificial creamers in my beverages, but the same stuff was struck by the doctor
under the heading, DAIRY/DAIRY SUBSTITUTE. Oh, well, I've never used them in any case.

(Keep in mind your fluid restriction)
(Diabetics -- use caution for sugar intake)
Fruit punch
Hi C ® (cherry, grape)
Horchata ®
Juices (apple, cranberry, grape)
Kool-Aid ®
Lemonade or limeade
Mineral water
Nectars (apricot, peach, pear, 1/2 c serving)
Nondairy creamers (Coffee Rich ®, Mocha Mix ®, etc)
Sunny Delight ®,(citrus flavor)
Pop/soft drinks (Regular or deit) 7-Up ®
Cherry 7-Up ®
Cream soda
Ginger ale
Grape soda
Lemon-line soda
Mello Yello ®
Mountain Dew ®
Orange soda
Root beer Slice ®
Sprite ®

Why are the nondairy items struck out here, but not under beverages? I don't know, but I don't use them in any case!
Brie [struck out by doctor]
Butter [struck out by doctor]
Cottage cheese [struck out by doctor]
Cream cheese [struck out by doctor]
Nondairy creamers [struck out by doctor]
Nondairy frozen dessert topping (Cool Whip ®) [struck out by doctor]
Nondairy frozen desserts (Mocha Mix ®,) [struck out by doctor]
Rice milk, unfortified

Egg substitute (Scramblers ®, Egg Beaters ®)
Pork (fresh) (pork chops, roast)
Tofu (soft)
Tuna (canned in water) Turkey Veal

Bagels (plain, blueberry, egg, raisin)
Bread (white, French, Italian, rye, soft wheat)
Bread sticks (plain)
Crackers (unsalted tops)
Dinner rolls
Dry cereals
English muffins
Hamburger/hot dog buns
Hot cereals
Melba toast
Oyster crackers
Pita bread
Rice (brown, white)
Rice cakes (apple-cinnamon, etc)
Tortillas (corn, flour)

Butter [struck]
Cream Cheese [struck]
Margarine [struck]
Mayonnaise [struck]
Miracle Whip ® [struck]
Nondairy creameers [struck]
Salad dressings [struck]
Sour cream [struck]
Vegetable oils (preferably canola or olive oil) [I use olive]

(Please, no chocolate) (Diabetics -- use caution with sugar intake)
Animal crackers Cake (angel food, lemon, pound, sponge, strawberry, white)[struck out by doctor]
Candy corn
Chewing gum
Cinnamon drops
Cookies (shortbread, sugar, vanilla wafers) [struck out by doctor] Corn cakes [struck out by doctor]
Cotton candy [struck out by doctor]
Fruit ice
Graham crackers
Gummy Bears ®
Hot Tamale ® candy
Jell-O ®
Jolly Ranchers ®
LifeSavers ®
Muffins (blueberry, lemon)
Newtons ® (fig, strawberry, apple, blueberry)
Pie (apple, berry, cherry, lemon, peach)
(Serving size = 1 medium-size fruit or 1/2 cup canned, no added sugar)
Apple juice Apples
Apricot nectar
Apricots (canned)
Cranberry juice
Cranberry sauce
Figs (fresh)
Fruit cocktail
Grapefruit (1 half)
Grape juice
Lemon juice
Lime juice
Logan berries
Mandarin oranges (canned)
Peach nectar
Pear nectar


(Diabetics -- use caution for sugar intake)
Apple butter
Corn syrup
Granulated sugar
Maple syrup
Powdered sugar

Bay leaf
Caraway seed
Extracts (almond, lemon, lime, maple, orange, peppermint, vanilla, walnut)
Garlic powder
Horseradish (root)
Lemon juice
Mrs. Dash ®
Onion powder or flakes
Parsley or parsley flakes
Pepper (ground)
Poppy seed
Saccharin [I'd NEVER use this!]
Sesame seeds


(Serving size = 1/2 cup, no added salt)
Alfalfa sprouts
Bean sprouts
Beets (canned)
Cabbage (green, red)
[Not Napa, it has too much potassium]
Chili peppers
Collard greens
Dandelion greens
Ginger root
Green beans
Jalapenos (fresh)

Mustard greens
Peas (English)
Seaweed kelp
Spaghetti squash
Summer squash (scallop, crookneck, staightneck, zucchini)
Sweet peppers (green, red, yellow)
Turnip greens
Water chestnuts
Watercress [I had Chinese watercress with garlic one night and the next day a blood draw with a high potassium reading. I've not eatten watercress since and haven't had potassium problems.]
Wax beans
(High phosphorous foods) DAIRY
 Cream pies or desserts
 Frozen custard
 Ice cream
 Ice milk

 Peanut butter

 Baked beans and pork 'n beans
 Beans (kidney, lima, red)
 Dried beans (white, navy,   pinto)
 Dried peas (black-eyed,
  split pea)

  Pancakes (from mix)
  Waffles (from mix)
  Whole-grain bread and cereals

  Nuts and seeds


Ask your dietitian about any other food that may not be on these lists.
[Yeah, sure. What dietitian? I've had to learn through my Internsit, acupuncturists and on my own! One of my strokes of good luck is that my local acupuncturist is also a nutritionist.]

In progress -- it may be slow but it is steady. Please bear with me. Thank you. -- barb

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Wilkie Wages War on Kidney Disease