How do I know? I bought sulphate test strips and tested my urine. I’ve done the test twice so far.
The day the strips arrived, I rushed to the bathroom to urinate. I had been preparing myself for days to discover a high level so I wouldn't be disappointed. Both Dr. Roberts and Dr. Yasko advise their patients to follow a special supplement and dietary regimen for weeks or months, and I’d only been reducing protein seriously for a week!
I captured my urine in a plastic container, plunged the test strip in for a second, and stared at four little red squares. Red? The squares are supposed to be pink!
My first thought was, Suppose I am too high for the test? I couldn’t handle the suspense, so I walked away from the bathroom. A drink of water diverted me for a few minutes before I returned to study the test strip in daylight: there was 1 pinkish yellow and 3 pink squares.
When I compared my result with the pictures on the package, I saw that I fell into the category of >400. It wasn't the lowest category, and so I had to check my notes. Dr. Roberts asks his patients to get their levels to >400 and keep them there for two months. That's not too long to stay on this diet if I can keep getting encouraging feedback with my sulfate strips.
In case you haven't the foggiest idea what I am talking about, you can read the post preceding this one called "My pounding heart". Here's a quick summary. Starting at the methylation cycle where methionine is converted to homocysteine and then recycled back into methionine, some of the homocysteine binds with the CBS enzyme and is further broken down into glutathione and/or taurine. From there it is turned into sulfite, and finally into sulfate. (These chemical pathways have hundreds of steps, and I have only given the most important ones.) Problems arise when metabolites are moving too quickly down the pathway, leading to excitatory toxins like ammonia, hydrogen sulfide, alpha keto-glutarate, high sulfites, and high urinary sulfate excretion. Problems can also arise when something is too slow, for example, when sulfite is not being converted into sulfate quickly enough.
My urinary sulfate tested quite high back in April 2007even though I was functioning well and finally, for the first time in 7 years, had the energy to do aerobic exercise. I half-heartedly followed Dr. Amy Yasko's ammonia protocol, and then, because I didn't notice a difference, gave up on it.
When I started the simplified five protocol this past December, Rich van Konynenberg recommended the following changes:
A. Cut out supplements with high sulfur, such as N-acetyl-cysteine, whey protein powder, taurine, and glutathione.
B. Started the following supplements:
• Yucca (I sprinkle some on protein foods when I remember, or I take a pill)
• Activated charcoal (1x or 2x a week, I mix ¼ tsp with water and drink it down with a straw, always waiting 3-4 hours after my dinner-time supplements, just before going to sleep)
• Ora Kidney (a product from Douglas Labs) once a day with meals
• Molybdenum (I take the liquid E-lyte drops) to support the conversion (at the end of the pathway) of sulfite to sulfate
C. Make dietary changes. "No way," I told Rich at first "I have a freezer full of kale, collards, and other things from our garden; plus I love garlic and onions." But as I learned more, and thought about the benefits I got from making dietary changes in the past, I realized my resistance was foolish. When I read on Dr. Robert's site that his patients should get their sulfate levels down for two months and then can add back some of their favorite foods, I decided I could manage just about anything for two months. If I didn’t get results, I would go back to eating all my favorite, forbidden foods.
So here are the dreaded dietary changes recommended by Dr. Yasko. Reduce protein intake and reduce all high sulfur vegetables. Just about everything with protein in it has sulfur in it, which makes for a very limited diet. Dr. Roberts has detailed instructions with food lists and recipes.
However, there is one catch, and it's a big one: people with CFS/ME tend to have problems on a low protein diet. Our amino acids are always low, presumably because we are burning them for fuel, since our Kreb's cycle and mitochondria are producing insufficient energy through sugar and fat burning. I’m one of those non-vegetarian folks who withers like an old vine whenever I've tried a vegetarian diet. And should I mention that when I did the raw vegan experiment, the white light in my meditations turning into a bright red steak, pulling me out of meditation and into the kitchen.
My compromise diet is to take small portions of meat, fish, poultry, goat cheese or soy (about 2-3 oz at a time) and to select vegetables that are low in sulfur, such as lettuce, cucumber, carrots, celery, and beets. Before I used the first sulfate strip this past Monday, I also had dinners of beans and rice pasta. But I feel best when I eat low glycemic, unrefined carbohydrates.
Because of my first, good test result, while patting myself on the back for being virtuous, I decided to add a little more protein and sulfur to my diet and retest after 2-3 days. I had yummy collards one night for dinner, an egg two days in a row, and added some garlic to my gluten free pasta. Fortunately, when I retested urinary sulfate, I was still in the optimal >400 range!
But there is another twist: by adding more animal protein, my urinary ammonia went up. And this led me on a search to examine other pathways that make or process ammonia. My search led me to NOS (nitric oxide synthase), where I also have a genetic polymorphism (a nice way of saying a defective variation) that slows down the action of this enzyme. But that is another day's discussion!
What to do if you have, or think you could have, a sulfur issue
If you feel worse when you take high sulfur supplements like taurine, MSM, glucosamine sulfate... or antibiotics like Batrim... or if you’ve had reactions to sulfa drugs... or you have asthma, which is often associated with reactions to sulfites.... You could have a CBS upregulation or a slow BHMT enzyme.
Here are four ways to get confirmation of your hunch:
• order sulfate test strips from a chemical supply lab; for about $30, you will get a jar of litmus strips that can test for urinary sulfate. There are five possible test results. If more than one of the squares on your test strip is yellow, you’re excreting excess sulfate.
• do a laboratory test for urinary amino acids. If ammonia, taurine, and or cysteine are high (or if they are in a moderate range but quite high relative to other amino acids) you most likely will benefit from watching sulfur.
• do a laboratory test for urinary organic acids. If sulfate is high, you’ve been tagged.
• order the nutrigenomics methylation panel through HolisticHeal.com This is the only certain way to know if you have a CBS upregulation or a BHMT downregulation.
I you decide to try the diet and supplement changes, here are a few caveats I've learned over the years.
Make everything you can from scratch, use organic and chem-free ingredients (locally grown where possible), and avoid restaurants. You can buy sulfite free wines and dried fruits at many health food stores.
Sulfites are in many processed foods. They are sprayed on light colored fruits and vegetables to prevent browning. Shrimp is sprayed to prevent black spots. Sulfites are also used to condition bread dough and to bleach food starches. Fortunately, a 1986 FDA ruling prevents their use at salad bars. All foods treated with sulfite must be labeled, so if you see a preservative on the list of ingredients, don’t buy that food. Restaurants that use canned and frozen foods most likely will have sulfites in their food.
See the FDA page on sulfite at http://www.fda.gov/fdac/features/096_sulf.html
Another resource is the No Sulfites page where you will find several informative essays from an individual with sulfite intolerance.
It may seem impossible to spend more time in the kitchen if you already have limited energy from CFS/ME. But it will pay off in the long run. When I need to keep meals simple, due to limited energy, I have salad I’ve previously made up which I combine with a small amount of a protein source from last night’s dinner. I always make enough food at dinner to have at least one lunch from the leftovers. If I have leftover fish, I’ll mash it up like tuna salad, mixing in freshly chopped celery, or perhaps carrot and cucumber and some organic mayonnaise. Or I might slice leftover meat or chicken and make my own chef’s salad (without the highly preserved luncheon meats.) A good friend found me a breadmaker at a yard sale; now I make my own gluten-free bread from Bob’s Red Mill mixes. His GF brown bread is delicious, and I spruce up the GF sandwich bread mix with fresh herbs, or poppy and caraway seeds, or sunflower and sesame seeds. I even made it once with pitted black olives. Yum!