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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Mon Nov 15, 2010, 07:23 PM
S001 S001 is offline
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MDS cured by a macrobiotic diet?

I came across this article about a 41 year old male, who was diagnosed with MDS (the type wasn't specified though). He decided to go on a macrobiotic diet and subsequently 'cured' himself.

I'm guessing it is only an exception. Sounds too 'easy' to be true actually. Any thoughts?
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  #2  
Old Tue Nov 16, 2010, 03:37 AM
Neil Cuadra Neil Cuadra is online now
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The article quotes his own doctor as saying we don't know:
However, Dr Liu said the reasons behind Mr Low's recovery cannot be fully understood. 'He could have spontaneously recovered or the change in his diet may have helped remove the unidentified toxin from his body,' he said.
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  #3  
Old Tue Nov 16, 2010, 07:53 AM
squirrellypoo squirrellypoo is offline
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I was THE healthiest person everyone knew when I came down with MDS. I was running 30km every week in addition to walking 6km back and forth to work every day. I lifted weights at the gym in addition to frequent heavy lifting while renovating our boat. I drank maybe once a week, and I cooked the vast majority of my own meals with organic fruit and veg, and I never ate red meat (mostly because I just don't like the stuff!). I can't even remember the last time I ate fast food, but it must've been at least 10-15 years ago. I was a few months' shy of 30, and the picture of health.

The suggestion that patients can fix their bone marrow through diet alone, or the implication that an unhealthy lifestyle brings this upon patients is absolutely insulting and makes me very angry. The only thing articles like this do is to delay patients from seeking actual treatments for their disease and lines the coffers of bogus macrobiotic "doctors" and "naturopths" promoting this drivel.

I'm tempted to send this to Bad Science and let Ben Goldacre (an actual doctor and researcher) have a field day.
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34/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 4 marathons now!! (PB 3:30!)
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  #4  
Old Tue Nov 16, 2010, 08:06 AM
S001 S001 is offline
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Quote:
Originally Posted by squirrellypoo View Post
I was THE healthiest person everyone knew when I came down with MDS. I was running 30km every week in addition to walking 6km back and forth to work every day. I lifted weights at the gym in addition to frequent heavy lifting while renovating our boat. I drank maybe once a week, and I cooked the vast majority of my own meals with organic fruit and veg, and I never ate red meat (mostly because I just don't like the stuff!). I can't even remember the last time I ate fast food, but it must've been at least 10-15 years ago. I was a few months' shy of 30, and the picture of health.

The suggestion that patients can fix their bone marrow through diet alone, or the implication that an unhealthy lifestyle brings this upon patients is absolutely insulting and makes me very angry. The only thing articles like this do is to delay patients from seeking actual treatments for their disease and lines the coffers of bogus macrobiotic "doctors" and "naturopths" promoting this drivel.

I'm tempted to send this to Bad Science and let Ben Goldacre (an actual doctor and researcher) have a field day.
I completely understand. My dad was always healthy throughout his life, and this diagnosis surprised us as well. I'm curious about what Ben Goldacre would have to say about this too.
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  #5  
Old Tue Nov 16, 2010, 02:08 PM
maggiemedical maggiemedical is offline
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A hope for bone marrow A hope for bone marrow and blood related dieses through herbal

I knew a doctor Li 35 years ago when one of my friends diagnoses with Aplastic Anemia. After doctor Liís treatment, she is not only survived, she also married and gave birth to a baby boy, she is still alive now.

Doctor Li is living in a small village in China, she inheritance her familyís many generationís herbal medicine practice and secrete prescription, her father is still helping her now to treat patient. On the past summer, I brought back one patients to visit her and found out her cure rate is so high, I suggested her to help more people since I know many is suffering and hopeless. She agreed and would like me to help her outside China.
Her expertise is on blood, bone marrow related diseases, I remembered she told me her cure rate for
Aplastic Anemia is more than 85%, Low Platelet is 100% and some other type of bone marrow related illness average more than 60% etc.
If anyone would like to try this alternate medicine practice, you can e-mail me your blood test, bone marrow biopsy and ultrasound for liver and spleen( if there is). My e-mail is : maggiemedical@gmail.com
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  #6  
Old Tue Nov 16, 2010, 06:31 PM
Robi1Knobi Robi1Knobi is offline
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The China Study

Very interesting article...I also read, "The China Study". Its a compilation of every nutritional study that's ever been done. It advocates a vegan diet. I tried it, but couldn't do it for 3-4 months, the time I needed to do it in order to see if my blood levels would be affected (takes that long for blood cells to regenerate), plus my B12 levels went down. Ugh...I love bacon! So..we are trying to be vegans-at-home and I work full time days now (your immune system needs to heal between 9pm-5am). Any thoughts? I have moderate AA, and not on any medications, just want to do what I can to help myself.
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  #7  
Old Wed Nov 17, 2010, 09:03 AM
cheri cheri is offline
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Macrobiotic Healing....

I too know of someone who cured herself oF AML thru Macrobiotics...her name is Christina Pirello--she is an author and has a pbs tv show Christina Cooks (www.christinacooks.com) She's amazing...check her out...
I have met her personally and she had AML at age 26--she is now in her early 50's. She inspired me to go macrobiotic back in March......when I felt I could do nothing to cleanse the multitudes of posions that had accumulated in me from chemo and sepsis and antibiotics galore!

I was 99% devout until recently, when neutropenia cut back on my fresh veggie intake....but I still will never go back to eating meat. I've flirted with some dairy recently, and my body makes it clear...stay away!
It did not cure me, but it made me strong enough to continue the fight. My hypoglycemia, from age 15, is GONE! My allergies are GONE!
No meat, dairy, caffeine,white sugar, white flour, processed foods, artificial sweeteners...sound impossible? No, but it does take some reading and some help and some discpline. I thought I had a healthy diet too.
Cancer thrives on sugar and acid. This diet corrects both. IT CAN"T HURT YOU!!!!!!!!! It is based on clean whole healthy foods, and is a lifestyle that you can delve in as deep or far as you wish, or not. I just makes sense.
I think eating clean is one thing we have all forgotten...the ways our parents and granparents ate. Fast food/restaurants didn't exist. It is scary how much poison is in our foods, and how toxic our environment and lifestyles have become.
I choose to eat this way because it can only help me in the fight...the less my body has to work on junk I put in it, the more it can fight the bad guys!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #8  
Old Wed Nov 17, 2010, 04:06 PM
Flamingo Jim Flamingo Jim is offline
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I have to agree with squirrellypoo here, it seems very unlikely that diet alone could somehow reverse chromosomal changes in your blood. My thoughts on when I hear about these miracle cures:
- Was the original diagnosis correct?
- Maybe some people at early stage of disease still have enough "good" cells left in their body to effectively fight off the bad ones. Now could a good diet help that process? Maybe, but I think it would be more a reflection of the persons own immune system. There are plenty of stories from middle ages of people constantly exposed to the Plague but never got sick..even though entire members of their family died from it.
- For every person you hear about being cured, what about the 99 others who went down that path and ended up with delayed treatment and/or dying?

I don't think I would take that chance on waiting. However, if you are out of options, I definitely would understand people trying anything..some people have no choice.
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  #9  
Old Wed Dec 22, 2010, 03:05 PM
Robi1Knobi Robi1Knobi is offline
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Cheri, Flamingo Jim, and Squirrelpoo..

Cheri- I'm on the same path you are, would love to trade recipes, please message me!
Flamingo Jim- I take a supplement that has been proven in double-blind, placebo-controlled studies to prevent DNA mutations. I myself have an RNA mutation (TERC), so I'm taking it to prevent further mutations. Its raw fruits, vegetables, and berries, so if taking it can prevent further mutations, why wouldn't you take it or add more to your diet? I do both...
Squirrelypoo- I'm sorry you were healthy your whole life, and this happened to you (. I can imagine how frustrated you were when you were diagnosed. I also thought I was a very healthy eater, but when I started doing what Cheri did (no dairy, refined sugar, no additives or artificial sweeteners) and changed my lifetime of thinking, my blood levels started to even out...I'm still moderate AA, but its been since May since I've needed blood.
I hope you all get better!! We are all different, so what works for 1 of us may not help all of us, but some things we do can only help. Is what your putting into your body everyday going to Harm or Help? That's what I ask myself...
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Linda, 45 yo, married, mother of a 13 yr old, moderate AA with TERC mutation (2007 NIH), now moderate AA (Nov 2009), Pulmonary Fibrosis 2010, not a transplant or immune suppressant candidate, was on Danazol study (Aug 2011-2013), last transfusion May 2011, trying to learn about nutritional help.
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  #10  
Old Wed Dec 22, 2010, 04:22 PM
tom30 tom30 is offline
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Hi Linda, Could you please share the name of the supplement you are taking, and maybe the link to the study you are referencing. I'm glad you found something that works for you. Thanks
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Tom- 50 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA
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  #11  
Old Thu Dec 23, 2010, 09:12 AM
Marlene Marlene is offline
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Hi Linda,

Yes, please share. There are so many products out there and if someone comes across one of high quality, it's good know.

Thanks,
Marlene
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  #12  
Old Thu Dec 23, 2010, 02:39 PM
Robi1Knobi Robi1Knobi is offline
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Marlene and Tom

I take Juice Plus. Ya'll can go directly to their website to check it the research and product out.
I became a distributor (can buy it wholesale) after being on it for 2 years, because I knew I'd want to take it for the rest of my life. Now my husband and daughter are on it too (1 kid per adult get it free for up to 3 years). Since my diagnosis, I have googled foods that help or hinder AA, and I try to avoid alcohol, dairy, tahini and cranberry juice due to studies I've found. I have read that pomegranate juice can help platelets, and also eating real licorice lol! Now...if I can have pomegranate martini's every once in awhile does that balance everything out? If you have any other helpful info to share, that would be great! Good luck guys )
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Linda, 45 yo, married, mother of a 13 yr old, moderate AA with TERC mutation (2007 NIH), now moderate AA (Nov 2009), Pulmonary Fibrosis 2010, not a transplant or immune suppressant candidate, was on Danazol study (Aug 2011-2013), last transfusion May 2011, trying to learn about nutritional help.
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  #13  
Old Thu Dec 23, 2010, 02:40 PM
Robi1Knobi Robi1Knobi is offline
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Marlene

Did you read the study I just came across about wheatgrass to lower iron-blood levels? Google it...its worth a try?
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Linda, 45 yo, married, mother of a 13 yr old, moderate AA with TERC mutation (2007 NIH), now moderate AA (Nov 2009), Pulmonary Fibrosis 2010, not a transplant or immune suppressant candidate, was on Danazol study (Aug 2011-2013), last transfusion May 2011, trying to learn about nutritional help.
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  #14  
Old Thu Dec 23, 2010, 09:59 PM
tom30 tom30 is offline
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I came across an article in the WSJ about a 70 yr old Doctor doing Triathlons, I use his diet as the basis of what I'm eating although I pass on the wine as that is toxic to marrow. Here is the cut and paste on that and the link.

The Diet

Before Dr. Maroon started running, his meals consisted of doughnuts, sugary cereals, hamburgers and hot dogs. "Now, I consider all of that poison," he says. "The body is a fine-tuned machine. It needs the right fuel."

Dr. Maroon is a proponent of the Mediterranean dietólots of fruit, vegetables and protein. "I avoid all whites," he says. "No white rice, sugar, pasta, salt." Dr. Maroon eats salmon, which is rich in Omega-3 fats, three to four days a week. He eats foods that he says naturally reduce inflammation, such as green tea, which he drinks three times a day.

For breakfast, he makes a bowl of oatmeal with blueberries, bananas and nuts and will also have a poached egg with a piece of lox for extra protein. Lunch is a turkey sandwich on whole-wheat bread and a piece of probiotic dark chocolate. For dinner, Dr. Maroon cooks his salmon with steamed asparagus, Brussels sprouts or broccoli, and will drink a glass of red wine.

http://online.wsj.com/article/SB1000...YWORDS=surgeon
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Tom- 50 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA
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Old Fri Dec 24, 2010, 10:13 AM
Marlene Marlene is offline
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Hi Linda,

Now I remember you posting about the Juice Plus. I had forgotten. It's difficult to find "real" licorice. Most is missing the herbs. But many herbal teas contain the root. Not the same as the candy though.

I did see the study on wheat grass for iron. John is using a green drink with it in it but he hasn't had his FE checked since April. He'll get that done in the next few months. Hopefully it will be in normal range.

M
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Old Sat Feb 12, 2011, 08:30 PM
Robi1Knobi Robi1Knobi is offline
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Licorice

I like Scotty dogs liquorice, google it )
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Linda, 45 yo, married, mother of a 13 yr old, moderate AA with TERC mutation (2007 NIH), now moderate AA (Nov 2009), Pulmonary Fibrosis 2010, not a transplant or immune suppressant candidate, was on Danazol study (Aug 2011-2013), last transfusion May 2011, trying to learn about nutritional help.
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Old Mon Feb 14, 2011, 01:34 PM
tom30 tom30 is offline
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dragon boat racing being studied for effects on cancer survivors

I found an interesting piece on macrobiotics which explains it as basically the usda pyramid minus the dairy and meats. www.ncbi.nlm.nih.gov/books/nbk20885/ . I see a few folks have tried it, has anyone stuck with it? Also is anyone following Bruce's protocol from aplastic central. There are quite a few folks that have credited recovery to macrobiotics. Since I haven't been diagnosed at this point and my numbers are stable I'm trying to avoid kicking a hornets nest. I eat a lot of fruit and wild salmon (5x a week) avoid red meat and i'm hesitant to take a leap to this. I can't believe that the diet hasn't been tested. While looking for data on the NCI web site in clinical studies I came across a study and Grant to study the effects of dragon boat racing on cancer survivors! http://www.cancer.gov/cam/attachment...portfy2007.pdf but nothing clearly stating if this diet helps or hurts.
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Tom- 50 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA
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  #18  
Old Tue Feb 15, 2011, 12:36 AM
Greg H Greg H is offline
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Hey Tom!

I haven't tried macrobiotics, but I did read a couple of books about it when my wife was thinking of making that move.

A lot of it makes good sense, as the NIH page you linked to suggests: whole grains and veggies as the base of the diet.

Dropping the meat and dairy is definitely do-able, but it takes some work to make sure you're getting enough protein. My daughter's a vegan, and protein has been a bit of a challenge. It's pretty easy to wind up on a mostly carb diet if you're not careful.

Finally, like a lot of stuff, macrobiotics can become a near religion with some practitioners, and, at that level it's pretty complicated and involves some ingredients that will require mail order or a big asian market nearby.

Good luck!

Greg
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Old Tue Feb 15, 2011, 09:40 AM
tom30 tom30 is offline
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Hi Greg, Thanks for the insight, I can't get my head some of the macrobiotic diet but the grain and vegetable basis makes sense and after reviewing what I eat I could use more grain in my diet. I started adding rice and grain, but I'm moving in small steps, so far my additions have just knocked off more crap by default. I all but dropped red meat but will keep the fish and some chicken for now. Some new studies just came out on the benefits of fiber. http://online.wsj.com/article/SB1000...WhatsNewsFifth

Greg, if you have any research bookmarked that you can share I'd appreciate it. I'm glad to hear that your results continue to improve....
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Old Tue Feb 15, 2011, 09:58 AM
Marlene Marlene is offline
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Hi Tom,

At first I thought you were joking about a study funded for Dragon Boat racing until I scanned the link. I don't understand why they continue to fund studies where we already know, based on empirical observation, prior studies and experience, that physical exercise is beneficial in the prevention and management of disease. I'm not sure what they hope to achieve by doing studies to confirm what is already accepted by most.

I think dietary studies are probably the most difficult to design. With macro-biotics, you really need to customize the diet for the individual which can be problematic in the design and evaluation of the study. Diet is just one aspect of healing and most studies do not have a holistic approach.

Marlene
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Old Tue Feb 15, 2011, 01:35 PM
Greg H Greg H is offline
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Quote:
Originally Posted by tom30 View Post
if you have any research bookmarked that you can share I'd appreciate it.
Hey Tom!

I haven't done much research online one macrobiotics; I just read through the cookbooks my wife bought.

I did find the book Anti-Cancer by David Servan-Schreiber to have a lot of good common-sense stuff in it -- backed up be research. It's not focused on blood cancers, but he's a neurologist who had a brain tumor early in life, responded to treatment, relapsed, and began to wonder why. So he has a lot of good stuff on anti-oxidants, soy, green tea, chocolate, as well as exercise and meditation. It's worth a look.

I bought "How to Prevent and Treat Cancer with Natural Medicine" on the recommendation of another marrowforums member, but I haven't started reading it yet (You'd think this sort of thing would take priority, but there's this new book on eels I just had to read first!).

If you're increasing grains, I highly recommend Bob's Red Mill Oatmeal and Five Grain Cereal for breakfast. We're also big fans of bulgur wheat based tabouleh salad, particularly in the summer.

This is going to sound strange, but bear with me. I have laying hens, and feed them on a ration I mix myself, using whole and cracked grains (scratch) and a vegetarian commercial layer feed. I can buy scratch that's just wheat and corn anywhere, but one of my suppliers has a four-grain scratch that also includes milo and millet. I make the extra effort to get that because the hens love it and lay better when I give it to them. They do better on a greater variety of grains, I think because they get a fuller complement of amino acids.

People ain't chickens, but I think the principle holds. Better brown rice tonight, oatmeal in the morning, and some bulgur at lunch than just one grain or another.

That's my chick-o-biotic thinking on grains!

Take care!

Greg
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  #22  
Old Wed Feb 16, 2011, 01:39 PM
tom30 tom30 is offline
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Hi Greg, Thank you for the reading suggestions, I downloaded anticancer last night and got half way through. It is a much more logical approach than I've seen elsewhere. I'll order the Bob's Red mill Oats when I run out of my regular box.

On your chick-o-biotic idea, you might try marketing that you might get a lot of yuppies from up north jumping on that bandwagon....

Thanks again....
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  #23  
Old Mon Feb 11, 2013, 09:08 PM
JulieD JulieD is offline
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Think bigger than the actual diet

I understand that folks have become leery of miracle diets, but this isn't about the type of foods you eat as much as WHAT IS ON THEM. This is about microorganisms. Do a little research. We evolved to subcontract much of our immune function to microorganisms. With the overuse of antibiotics and excessive cleaning, we have sent autoimmune diseases through the roof. Look at the most current research; it's all about treating MS with pig whipworms, treating C. diff infections with fecal implants. We have to maintain a balance of health microorganisms in our guts, and that is what micro- or macrobiotic diets, or vegan diets do for us. Fatty foods favor one kind of microorganism, and not the one you want dominating your immune function. So, look past the idea of the diet and at the big picture of what the change promotes in terms of balance. Also, go pet some farm animals and DONT wash your hands after!
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  #24  
Old Mon Feb 18, 2013, 02:55 PM
Lbrown Lbrown is offline
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I'm participating in this study: http://www.indiegogo.com/ubiome/x/2022202?c=home (13 hours left to join if you're interested).

Hopefully they will learn a lot more about the human microbiome, and the way it affects diseases.

Deb
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Old Mon Feb 18, 2013, 07:09 PM
Marlene Marlene is offline
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Interesting project Deb.

Gut microbe balance is an important factor in natural medicine. Has been for well over 15 - 20 years now. It's only been recent that mainstream medicine is looking at it.

Take a look at this article just published linking gut bacteria to cholesterol metabolism.
http://www.sciencedaily.com/releases...0218092558.htm

JulieD....Most if not all pre-modern cultures ate fermented foods daily. Not only were they nutrient rich, but contained way more beneficial bacteria than you could get in probiotic supplement.
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