The Beginning of Steele’s Chronicle
Our Journey with MDS Begins by Patti Steele:
On July 26, 2004 my mother-in-law came to our home to celebrate my son’s 5th birthday. As we sat on the couch chatting I happened to look down at the floor and my eye caught something. Mom’s pant leg had raised just slightly and I caught site of the largest bruise I had ever seen in my life. The darkest black and purple I’ve ever seen, this bruise was just slightly larger than a large grapefruit. As I freaked out on my MIL for not telling us about it she explained what happened. She fell over a piece of furniture about six weeks prior to this day. She said it had gotten so much better than it was. I was horrified!
My initial thought was that she had some sort of blood clot. I took her to the doctor the next day. He did not believe it was a blood clot but did an ultrasound just to be sure. He also did a standard blood test. The next day mom received a call with the name of an oncologist that she was to make an appointment with right away.
The oncologist did a bone marrow biopsy and in the hallway told me that mom was very very sick. Her blood test results showed a hemoglobin of 6, a hematocrit of 18, platelets of 50,000 and white cells of 2000. I took this information and went home and began researching everything I could find about these numbers. By the next day I knew two things. Mom either had Aplastic Anemia or Myelodysplastic Syndrome of the worst type. And neither of those things had a very good prognosis. That same day they sent mom for her first blood transfusion. Two units of blood flowing into her veins for what would be the first of many times doing that.
On Aug. 3rd we headed back to the oncologists office for the results of mom’s BMB. She had MDS classified as RAEB-t. Refractory anemia with excess blasts in transformation. She also had greater than 30% blasts in her marrow which meant she would probably transform to leukemia very soon. Today, her disease has been reclassified as RAEB-2. Meaning it is of the most serious type with the poorest prognosis. Her cytogenetics were normal. That, we found out later, was a good thing.
The doctor refused to give us a prognosis per se, he would only tell us mom was very ill and there was nothing they could do for her except for a new chemo that had just come out. This chemo had a 15% success rate. What we heard was that it had an 85% FAILURE RATE. Both mom and I said that if we took a test in school and only got 15% on it, we’d flunk that test. How could someone call that a “success rate?” Mom made up her mind right then and there that she would not do “their” chemo. By this point I had read enough to know that she should be getting irradiated blood products for her long term health. The doctor literally had a fight with me. When I finally told him we’d take our money and find someone who would give us what we wanted he threw his hands in the air and said, “Fine! You can have your d*** irradiated blood, but it’s a waste of money!” But we got what we wanted. And we believe to this day that is why they’ve not had trouble finding mom a match despite having received more than 45 units of blood.
My internet research yielded that mom probably had 4-6 months to live.
And so our journey into natural medicine began. Fortunately, mom had always taken very good care of herself. She ate very very healthy already, maintained a healthy weight, was physically active and really felt pretty good.
I read everything I could about MDS on the web. From there, I put together a supplement routine and diet regimen that she was to follow as closely as possible. And mom did it all. She is the most disciplined person I know. For 12 months we flew by the seat of our pants reading, studying, changing her supplements around everytime we learned about something new. And she did pretty good. She still felt well and had energy, even when her blood was low. The doctors couldn’t believe it, but they wouldn’t admit that anything we were doing was helping. Mom was simply an “anomoly.”
Over that first year though, mom’s transfusions became increasingly more frequent. She was losing 4 weeks off of every transfusion until her body settled on every 10 days or so. And that became her new “normal.” By now her platelets were only 8,000 and she was taking large quantities of Vit. K daily (9mg. twice daily) to prevent bleeding and trying to keep from getting platelet transfusions. It was around this time that we found out about a program at mom’s clinic called Integrative Medicine. It is a group of naturapaths that work directly with cancer patients (as well as others) and their doctors to use natural medicine as well as conventional medicine to treat their diseases. This was what we needed! We met Dr. Cindy Reuter and she has become one of our best assests in this fight. She was thrilled to hear that mom refused chemo because she had seen the ravages of it with too many of her patients. Dr. Reuter went through the supplements I had mom on and the diet changes we’d made and really fine tuned things. She explained the importance of not overloading the digestion with pills as that could be bad for the body as well. We liquified as many of mom’s supplements as we could and she eliminated a large multitude of them. She was focusing on fixing what made mom get sick in the first place? Mom and I had determined that the stress of taking care of dad with Alzheimers at home for 2yrs prior to that put her body through more stress than it could take. That stress, we believe, allowed for her one and only root canal to send infection throughout her whole body. We read a great book called “The Root Canal Cover-Up” and realized that what he described in that book is exactly what happened to mom. The naturapath agreed with us that the root canal and subsequent stress of caring for dad were the precursor to mom’s disease.
After about 4 or 5 months with Dr. Reuter she felt like she’d turned over every rock she could and asked mom how she felt about doing chinese medicine. We were very open to that so long as we stayed away from the spiritual aspects. Mom and I are both born again christians and knew the importance that the spiritual emphasis plays in chinese medicine. And so we started to meet with Dr. Menge Kou. Dr. Kou put mom on many chinese herbs mixed together that she would make as a tea sometimes up to 5 times a day. He also did acupuncture, a treatment called Moxa, and he trained her on some whole food type of eating. We’ve been seeing Dr. Kou for only 4 months or so now.
This saga continues on the attached pages at Steele’s MDS Herb Chronicle.
May 10, 2007 Update
Sadly, Patti’s MIL passed away on April 9, 2007. However, Patti has graciously shared more details of her MIL’s treatment for anyone interested. I have cut and pasted it below from the Chronicles of Steele 2007 thread.
“This will end up being a fairly lengthy post. I am going to try and put the nutritional/supplemental routine that mom was on into print here. I am only going to use the most recent routine she had because things really changed from the beginning when we were flying by the seat of our pants to the end when we had the guidance and help of both Drs. Reuter and Kou. I will separate her routine into food and supplement categories. And I will probably have to use some commentary to explain a little bit.
Foods mom ate nearly daily specifically to treat her disease:
To cleanse the liver:
1 organic beet
1 organic cucumber
1 organic lemon
juiced through her champion juicer. Added 1 tlbs olive oil. Drank one time daily.
1/2c. organic yogurt daily
1 tbls of flax seed mixed with her yogurt daily
1/2 c. mung beans daily for iron chelation
2 cups of Dr.Kou’s chinse herbal tea formula daily
For platelets:
juicing 1 whole pineapple. Eating 1 tbls of black sesame seeds ground up.
Eggs, meat, cheese daily for protein to prevent muscle wasting.
Supplements:
1 scoop of Beyond Whey added to her daily yogurt (prevents muscle wasting)
HMF or Flora Source probiotic daily (1/2 tsp. of HMF/ 5 caps of flora source)
Unda Numbers 2, 37 and 710. These were bone marrow and liver cleansing homeopathics. 10 drops each twice daily. One of these is called Medullosseinum Plex (bone marrow).
2 capsules of Natures Sunshine Super K daily (help bleeding/clotting). These are 9mg caps – not the 1 mg you get in the store
1 capsule Natures Sunshine kidney activator daily (to clear out fluid – her kidneys weren’t functioning fully and if she didn’t take this fluid would build up around her heart and lungs and cause pain). This is a combo of uva ursi, juniper berries, parsley, dandelion root, and chamomile. 830mgs.
1 capsule/3x’s daily of Natures Sunshine Super Algae – this is a combo of Klamath blue green algae, chlorella and spirulina. 1600mgs. It was used to keep mom’s bowels moving as this was an issue for her.
1 capsule calcium/magnesium 400mg mag/800mg calcium
1 tbls Cod Liver Oil daily
1 tsp Natures Sunshine chlorophyll mixed with 8oz hot water (this is yummy). chorophyll is an excellent blood builder.
1 capsule Milk Thistle 2x’s a day 250mg caps. This was for liver cleansing.
1 cap. Eco Marine Shark Liver Oil – 3 x’s a day 500mg.
1 cap. bromelain 2x’s a day – 500mg.
1 cap Bee pollen – 400mg
1 cap. Natures Sunshine Liv-J. – liver cleanser 872mg.
1 cap. Natures Sunshine heavy metal detox – 446mg.
Mom was taking a lot of stuff not sanctioned by Dr.Reuter or Kou. She just felt like she “had” to if there was any chance it would work. Particularly the liver cleansing stuff because she was taking neupogen shots twice a week and was concerned about the drug processing through her liver. When her platelets hit 8000 Dr.Kou asked her to not take any capsules anymore out of concern they would cause bleeding in either her esophagus or stomach. From that point on she emptied all of her capsules into either her morning yogurt or if they were evening capsules, into a very small amount (like a tablespoon) of applesauce. Just enough to get it all down. She was extremely regimented up until she went into the hospital on March 2nd. After that, she gave up just about everything but the yogurt and probiotics in the morning (and she wasn’t taking the 1/2 c that Reuter told her to but that’s what she was supposed to be doing). She drank Dr.Kou’s teas when she could get the energy to make one up. She lived 38 days from the time of her first infection and 9 days from the day she fell.
If we could do one thing over again I would rather she juiced more and did less supplements. But she had a mind set about supplements that was hard to change. Knowing what I know now, after a few years of study, talking, research, I think juicing would have been far more valuable. But maybe it wouldn’t have bought her anymore time either. Only God knows. Anytime someone told her about a supplement they read would help something pertaining to her MDS she would try it. Even if only for one bottle. But I think this was detrimental. However, she would not be swayed otherwise.
I think that’s it. Hopefully I haven’t missed anything important. If I have, I’ll add to this later.
Patti”
Thank you, Patti!
Marla
