Nutritional Information

[sugarwhale]

My mom is 88 and was diagnosed with MDS (RA) about 3 years ago. She is transfusion-dependent, needing a transfusion every 3 weeks. Her RBC has been the major problem. Recently her WBC has been going down, and our doctor gave her Neupogen. Thalomid worked for 3 months; Vidaza worked for 6 weeks. Now nothing works. We’re hoping the Revlimid can be obtained soon, if the bureaucrats will stop sitting on it. I would like to know if there are supplements/foods my mom can eat which might help the MDS. What about herbs? What foods should she NOT eat? She eats pretty well; she is healthy other than the MDS; she is not diabetic; her weight is fine;and she has no allergies. Our doctor is wonderful, but he isn’t particularly enthusiastic about Alternative Medicine. We would like some ideas. My mom also has CLL, which we think may have been caused by the MDS; the CLL doesn’t seem to be a problem. Any ideas?

[uno grasshopper]

Hello Sugarwhale:

I know that many of us have different nutritional deficiencies, and thus different needs, so a tailored diet is best. There are also tons of different diets claimed to be healing for many different types of illnesses so it can make it confusing to choose which to start on. Some diets even seem to contradict each other. However there are some things which most natural alternative advocates agree upon such as avoiding refined table sugar, avoid harmful oils and fats like trans fats and hydrogenated oils, have an adequate clean water intake, stay away from preprocessed packaged foods, and use only organic or biodynamic produce. There are likely more things, but those are what comes to mind first regarding nutrition. Other than that I have listed a guideline of the foods I eat which can be seen here http://www.geocities.com/marlakins/Marlas_grub_list.htm The stuff I eat is on the top half listed as my “yes” list, and towards the bottom of the page is my “no” list. So far this has worked well for me. At the beginning of my diagnosis my diet was completely different. You can see it on my website http://www.geocities.com/marlakin under “My treatment.” You’ll noticed I started out vegan, but am no longer vegan. I now eat plenty of meats w/good fats. Also, you can check out John from GR’s health program on my website. Just click on to “Who is John Hess?” and it’ll take you to his story and program. OR here’s the shortcut to get to John’s story http://www.geocities.com/marlakins/johns_story.html

Hope this helps, and take care!

Marla

P.S. Have you looked into Essiac Tea at all? My father has MM and has been using Essiac which appears to be helping him. He has slacked off on the Essiac only to have his IgG counts move in the wrong direction. Upon restarting the Essiac, his IgG numbers are again moving in the right direction. I’m not sure how effective if would be for CLL or MDS, but Essiac is touted to be beneficial for other conditions like various cancers and HIV. My dad uses the actual herbs and makes a tea out of. It’s much cheaper to use that way than buying prepackaged Essiac tablets. My suggestion is to use only organic or wildcrafted herbs since non-organic types can be sprayed with lots of things that could actually be harmful to your health. (fungicides, pesticides, herbicides, etc.)

[sugarwhale]

Dear Marla,
Thanks so much for all your information. We’re going to ask our good doctor about that Essiac Tea. I think you’re wise about the refined sugar; one problem is that my mom has a sweet tooth! I’m 62 and healthy, but my sweet tooth is worse than hers! Some of the things your Website suggests we have done for years. We use good oils and whole grains. I think we’ll be taking a lot of your advice, and I thank you so much for replying.
Your friend,
Janet, aka Sugarwhale (that’s, unrefined sugar!)

[uno grasshopper]

Hello Janet:

You’re fortunate to do so well inspite of your sweet tooth! I admit I was quite bad, too! I think blood transfusions scared me out of it. Ha ha! I don’t know how true it is, but I’ve “read” that cravings for sweets is an indication of a magnesium deficiency. And one reason chocolate is a favorite is because chocolate actually is a decent source of magnesium. How convenient. . . Ha ha. But it would be interesting if you tried taking some magnesium supplements and see if it really does lessen your sweet cravings at all. If you do try it, let me know the results! It’s one thing to just read about it, and another to actually “see” results.

Take care!

Marla

[Caroline]

Marla,

I think what you said about Magnesium is true. I used to crave sweets all the time. Then a few months ago my legs started cramping up in bed almost every night and my friend suggested that I take Calcium and Magnesium. I started right away and found that the cravings stopped. I never really thought about it until I read your post about Magnesium. I can’t think of any other reason. I would say stress but my history tells me that whenever I am under any kind of stress, I eat anything I can find. Not now though and I have more stress in my life than I have ever had. I actually crave salads oddly enough.

Caroline

[Luke and Margaret]

Hi
We just returned from the naturopathic clinic. The critical supplements right now are magnesium (2x 250 mg., one just before bed), a whey powder to add proteins and calories, a diet focussing on soups with vegetables, chicken and turkey. The meat can be pureed if the appetite isn’t up to taking it any other way. No red meats of any sort. Rreduction in sugars; hHoney is the recommended sweetener.

Recommmended foods include 2-3 cloves of raw garlic daily, tomato, cooked cabbage, and mung bean sprouts.

A regime of hot and cold showers are prescribed to get the circulation going to to support lymphatic drain – start warm 3 minutes, then cold 1 minute, repeating the cycle three times and ending with cold. Also to stimulate circulation and digestive functioning, we’re to rub castor oil on the abdomen before bed time.

I hope this is helpful. I’ll tell you more as it unfolds.
Margaret

[patti]

Janet,

I’ll have to vouch for the magnesium also. I started taking calcium and magnesium in high school to control PMS symptoms and I lost my cramps, moodiness and sugar cravings after taking it for about 2 weeks. You have to build it up in your system. I take 1000mg – 1500 mg of calcium a day and the magnesium is 1/2 of total calcium dose.

Marla, yep, you’re right. Chocolate does give the body magnesium but the amount of magnesium depends on if the chocolate is regular milk choc. or dark choc.

Best Wishes,

Patti

[sugarwhale]

Dear Caroline, Luke & Margaret, and Patti,
My deepest thanks to all of you for helping me out. I am fine: It’s my MOM who has MDS. Both of us are addicted to chocolate. I DO take magnesium and calcium. However, we are going to ask our doctor about putting my mom on magnesium. It is quite possible she isn’t getting enough.
My mom and I are both under a great, great deal of stress just now. In a way she handles it better than I do: I’m the one who…overeats!
My mom does eat soups, garlic, tomatoes and cabbage. So do I. Neither of us likes mung bean sprouts! My mom also eats the protein whey powder; she likes it!
My thanks to all of you for helping us. We both need a nice vacation. Our favorite vacation destination is…Canada. We adore Canada, and I dream of taking my mom up the CN Tower and having her step on the glass floor! Thank you, all of you, so much. I’ll let you know what the doc says!

Your friend,

Janet

[Caroline]

Janet,

I hope your dream comes true. Canada is a nice place. Right now Ontario is pretty with our coloured trees.

I live an hour away from the CN Tower. I can step on that glass floor, but I don’t dare look down……I am terrified of heights. hehe My dream holiday is to go down East and see Prince Edward Island. My brother-in-law is presently relocating there from England so maybe next summer we will take my 93 year old Mother-in-law to visit.

Keep us posted. In the meantime, try to have a nice weekend.

Caroline

[sugarwhale]

Dear Caroline,
P.E.I. is gorgeous, and there are so many wonderful things there in addition to Anne of Green Gables sites. Canada makes life worth fighting for. Best wishes to you, Caroline!
Sincerely,
Janet

[bhanson]

Hi, Speaking of nutrition, has anyone had experience with Vitamin K2? Is is a good idea for MDS patients. I see some experiments done with it but no definitive conclusions? The pineapple and sesame seeds and noni are going well. We see the naturepath this week and are hoping for a little improvement in counts. Thanks to you all for all the great information and advice. bhanson

[patti]

Bhanson,

My MIL takes vitamins K1 and K2. Because her platelets are so low (around 17K right now, but have been as low as 10) we figured the vitamin K would help her clot if she started bleeding somewhere. Not sure if it’s ever worked but so far she’s never had to have platelets depsite how low hers have gotten. I have to assume that K2 is not a bad addition to someone’s regimen for MDS.

Patti

[bhanson]

Thanks, Patti, My husband takes K1 and I have ordered K2. I thought it might help, he has been bleeding excessively under the skin from small scratches. How much does your MIL take of each. Thanks for your help, regards, bonnie

[patti]

Bonnie,

My MIL just takes what the dosing on the bottle says. If it says two capsules then she takes one, twice daily for a total of two. Spreading it out will keep the volumn of the K in her body more evenly. Also, check out Marla’s site that she listed above in this topic post. She has done remarkably well using natural treatments for her aplastic anemia.

Best Wishes,

patti

[dusty]

For what it’s worth, I would caution the use of supplements unless their use is measured with routine blood work. This is especially true for calcium. Betty had a hypercalcimic event that was about as scary as anything we have gone through. Apparently some of the biproducts of leukemia behave chemically the same as the causes of osteoporosis. The result is that excess calcium is not removed by the kidneys. A build up of calcium is manifested as extreme constipation (excess calcium pulls water out of the colon,) weakness, lack of coordination, confusion, disorientation. She was hospitalized for four days to get the calcium back down. After this was over, I learned that ocassionally the first indication of leukemia is the hypercalcimic event. When Betty’s calcium got back under 10, we found she had low magnesium and phosphorus. We used over the counter mg supplements (250mg 2-3/day) to get the magnesium back up, and “Neutraphos” to get the phosphorus back up.
These electrolytes can be checked any where they do CBC’s. I would suggest they get checked at least every two weeks.
Stay Strong

[Author]

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