Wilkie Wages War: June 2007 — A scary venture: Flying in the face of medical “wisdom”

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.

June 2007 — A scary venture:
Flying in the face of medical “wisdom”

By Barb Wilkie
I am trying something new. To me, at any rate. It flies in the face of “medical wisdom” as it has me eating potassium- and sodium-rich foods. And, drinking “tons” of water.

With worsening kidney health — not only the creatinine and BUN had soared, but the hemoglobin and hematocrit (red blood cells) had dropped to the lowest I’d be allowed to go without medical intervention being strongly suggested. As I saw it, I lived long enough to make it to my golden anniversary and if I’d like to aim for another milestone, say another decade or so, I’d best do something. Something short of medical intervention, that is. For I already live with chemical injury . . . MCS . . . Multiple Chemical Sensitivity (or Sensitization as I prefer to think of it) — the disability that cannot say its name out loud. Our healthcare system, as good or as bad as you may feel it is, is terrible — beyond terrible, in my opinion — when it comes to further polluting its patients with superfluous toxins benignly labeled “fragrance.” Along with pesticides and prescribed drugs, I might add.

I’ve had more than my share of Kaiser scentitizing experiences the past couple of months in being with my husband for his various tests as he is now battling prostate cancer. Again and again, my body has screamed at me: Kaiser is a source of air pollution due to all the fragrances everywhere. I could not use the bathroom in Emergency without being poisoned when I was called in in April for my too-high potassium reading. (At least the staff back in Emergency were not loaded with fragrances and for that I was thankful.)

But, fellow patients were enough to do me in . . . And on that score, Kaiser for whatever reason seems to steadfastly refuse to begin an education program of its staff, members and visitors. Why? Kaiser is a “society” of members and surely its many publications and notices stuck up on walls and in elevators could begin carrying the message: Fragrance products are volatilizing chemicals that pollute the air for all. Please do not use or wear scented products when coming to Kaiser. If they want to elaborate, they could add something like this: Fragrances should be used only among consenting, nonpregnant adults in the privacy of your own home.

Kaiser could educate patients and visitors, and certainly their own staff. All staff. Doctors, nurses, medical assistants, as well as all administrative staff, and even contractors. There is no reason why any one of those folks have to wear the superfluous toxins commonly and benignly known as “fragrance.” IF the product has the word “fragrance” on the label, it is poison to your body and the bodies of others. Just what kind of poison and what it will do to your body, may yet to be determined in some cases. In others, we are already fighting diseases that are often called “UNEXPLAINED” by the doctors. They just know they can diagnose a distinct disease, but they often don’t have a clue as to cause. OF course, they choose not to look at the commonly used petrochemical-derived fragrances, let alone artificial flavors or pesticides, OR prescribed drugs.

So, knowing how my body reacts when I’m around Kaiser and its plethora of scents, I had my blood drawn for a microscopic test of live and dried blood cells. My cells all ganged up, were terribly misshapen, had “bull’s eye” like centers of white showing — generally, my sample of live and dried blood showed my diet was far too acidic. Too many carbohydrates and protein. But, it would have been even worse — if that is possible — IF I had followed the renal diet handed me by my first of three Kaiser nephrologists (the fourth one I saw was then at UCSF) — I’ve not seen any of them more than once. Too much fear mongering drug pushing, and not enough sound encouragement to try to manage both MCS and renal disease. My internist, on the other hand, recognizes MCS and is working with me to handle it and my stage five renal disease. (Of course, should I get to the point of needing dialysis — IF I decide to try that — I’ll have to find a nephrologist.) I was told that to stand a chance of improving my kidney function — my “scrubbers” don’t work, but my kidneys continue to produce urine — I had to begin greening my meals. I immediately asked: What about the potassium? Any vegetable that is good for the general population is on the NO-NO list for the renal patient because of its high content of magnesium and/or potassium. I was told, THAT is exactly what I needed, along with lots of salt and water. But not just any water. Iodized water. And if you don’t have an iodizer, then distilled water that’s been doctored with an activator and baking soda. And, not just table salt. That’s bad for everyone. Himalayan salt is what is recommended.

GULP!

Before starting greening and salting our bodies, we went through a couple of weeks of transition. During that time, we had the anniversary celebration with the kids in mid June (our kids are all still in their 40s, and they have kids ranging in age from 19 to 3). My husband and I split a serving of salmon and fresh steamed vegetables, along with each of us having a salad. We had a grand time at Parkside Cafe in Stinson and had an alkalizing meal to boot.

As with most things in our 50 years, we are now on this diet together. Bill is battling a recently diagnosed aggressive prostate cancer and I am still waging war on renal disease. Together we had our blood tested; together we had our blood re-tested. In two weeks time, just in the two-week transition stage, we both saw remarkable improvement in the look and shape of our red blood cells. We could even see white cells moving in for the kill of some bacteria. Very interesting! Our source of education and entertainment? Justin Schmidt, who was trained by Robert O. Young, PhD of pHMiracleLiving.com. To see the book, go to http://www.amazon.com/exec/obidos/ASIN/0446528099/ref=ase_wwwphmiraclel-20/102-0138622-6385721.

After a week on the greens diet, I asked for an interim blood test through Kaiser. The potassium count had gone up to 5.7 that first week, however, as I’ve lived through a potassium reading of 6, I did not hear a peep from Kaiser about the potassium being too high this time. While I had cramps at that time, which ran along my feet and hands, legs and arms, I did not have an irregular heart beat. That I tend to get when my potassium is lower, like Kaiser likes it.

And now, following the second week of this special alkalizing diet, many of my blood cells look normal under a microscope and I no longer have any trouble with cramps. We’ll see what the July and August Kaiser blood test readings tell us . . . I’m hoping against hope that the creatinine and BUN will drop dramatically and the red blood cells will show an increase and that the rest of the stuff will all normalize nicely. Pipe dream? Why not? For more on pH balancing, see below. What is the immediate good sign? A drop in blood pressure. While still running too high to please Kaiser, it only goes into the low 150s with a fragrance assault, instead of up over 200 or in the 190s, which it has been known to do in the not too distant past. We even spent a night at Stinson with fabric softeners in the air, and I held steady in the 140s. Unbelievable for me. It must be the alkalizing of the blood . . . for there are too many records of my blood pressure soaring when exposed to fragrance products, and especially fabric softeners.

Stay tuned . . . follow along with the blood tests. See if this alkalizing diet might be something you would wish to try.

Alkalizing — sugar and yeast reduced — diet roughly means we eat NO vinegar, potatoes, mushrooms, beans, oranges, bananas, beets, carrots, wheat, breads of any standard description, certainly no desserts . . . although we did eat millet bread during transition. We eat NO dairy — but then, many doctors tell renal patients and cancer patients, “NO DAIRY.” We also do not eat generally sweet stuff, which is why we eat no beets, oranges or carrots. IF we need something sweet, it’s Stevia that we take on our occasional bowl of Buckwheat cereal. But we find that if we open a packet of that, we share just a teeny amount as it is excessively sweet by our standards.

We do eat — and I dare say, enjoy! — avocados, artichokes, asparagus, lettuce, kale, cucumbers, tomatoes, broccoli, spinach, cauliflower (mashed to make faux potatoes), grapefruit, limes and lemons. The later three, while seemingly acidic, supposedly become alkaline in your body.

Thus far, this is all the good news . . . and it remains so for my husband, but then, he was not living with chemical injury since age five, and made far worse in a toxic workplace, either.

But in my case, I’m not only living with stage five kidney disease, but also the effects of living for 64 years with varying degrees of chemical injury. So, by the end of June, I started experiencing some really strange symptoms. The worst of it was Parkinson’s-like symptoms, which lasted three weeks, but with lessoning jerks, shakes and tremors as the time wore on. By my birthday, mid-July, I only had an occasional buzz around my lips or in my finger tips and got through my birthday celebration without a spasm.

So, you can see why I started this diet with trepidation, even though I was hopeful I’d turn around my kidney disease by eating green. I’d had it drummed into me by Kaiser that I could not eat any potassium-rich foods without risking a heart attack or a stroke. Be dead on the kitchen floor with 24 hours of a high potassium reading. And that April 13 — Yes, Friday the 13th — Kaiser call about my high potassium, still was/is too real and too close for me to go into this diet with alacrity. But, here I am. Surviving thus far. So far so good. — barb; August 23, 2007