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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches |
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#1
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Vitamin K2 + D3
In Japan, MDS patients are often treated with Vit. K2 + D3 orally and the response rate is reported as high as 30% (Professor Miyazawa at Tokyo Univ). I have been on an informal trial for 6 months and nothing seems to have happened although virtual stability in my counts may in fact be a good sign. And there are absolutely no side effects either. Has anyone else any experience with this form of treatment?
Ken Whiteman (MDS- RCMD) Last edited by Ken Whiteman : Fri Feb 2, 2007 at 07:09 AM. Reason: I had not finished the post |
#2
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how can we also can do this trial?
thanks bonnie |
#3
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Because these are vitamins there are no insurmountable obstacles in creating your own trial although your doctor's approval would be advisable if only in monitoring any adverse effects on elevated calcium levels (which has not occurred in my case).
The dosage is 45mg Vit K2 daily and 0.75micrograms Calciotrol (not the normal Vitamin D3) taken orally every day. In Japan they seem to give it 6 months to see if there are results. You may have trouble finding Vit. K2 capsules as opposed to Vitamin K capsules which include K1, K2 and K3. In Australia they were imported for me direct from Japan where they are manufactured as "Glakay" by Eisai Co. Ltd. in Tokyo. They are also more cheaply available in Bangkok, Thailand where the same capsules are repackaged for the local market under the same brand name and packaging. You should do your own search on this therapy - look up "Vitamin K2 and MDS" or have a look at reports by mainly Japanese researchers especially Professor Miyazawa. There was also a paper presented at the 2005 ASH conference. Frankly I think it is worth discussing with your doctor as there seems there is almost nothing to worry about regarding adverse side efects etc. and the cost is hardly a burden. Good luck, Ken Whiteman |
#4
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hi
is there anyway we can contact and join this trial of Vitamin K2 + D3 ? From what i find on internet this is a worldwide trial, is there any contact that can be provided? thank you very much bonnie |
#5
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You can create your own trial by simply buying the vitamins yourself or if necessary through a doctor's prescription. The Glakay (Vit. K2) is manufactured in Japan and as I believe you are in Hong Kong surely this would be readily accesible perhaps through a hospital pharmacy. Be careful to take the dosage as indicated in my previous post as one capsule three times a day adding up to 45mg of K2 and 45 micrograms of Calciotrol (derived from D3) Have a calcium level blood check and monitor the level after a few months to make sure there is no adverse effect - which would be unusual according to the research.
Also clear all this with your doctor of course; this is an unusual therapy for MDS which apparently does work for some. It is not a drug treatment which is no doubt why little attention is given to it in the USA and other countries. But definitely worth a try : no downside and inexpensive. |
#6
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thanks for your information
will there be any effects on me since i am a Hepatitis B virus carries i am asking on this forum because my dr seem not to care about any alternative medicines. that is why i hope if there is a way can contact japan's people directly thanks bonnie |
#7
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Bonnie,
I am not a doctor but I cannot see how your Hep B condition would be affected by a course of these vitamins. Seems like you should be changing doctors immediately if your existing doctor is so lazy. |
#8
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Hong Kong Doctors
Dear Bonnie
We were from Hong Kong but now moved to live in New Zealand.We share the same feeling with you on the ways HK doctors treated their patients.My wife was also Diagnosed as MDS RAEB in 2004 and treated at the University of HongKong Blood unit and had bad experience with the doctors there.We went to Shanghai and other places to look for alternate treatment and are now taking regular herbal tea.Other then the regular 6 weekly blood transfusion my wife looks normal,her white cells and platelets were also half the normal level but maintain that for the last three years.Rgds Robert siu |
#9
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hi robert thank you for your support and message
is there any recommendation you can give for herbal dr. here in hong kong that you know of? or you are having natural treatment in new zealand? thanks bonnie |
#10
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Quote:
Regards Brian Mullan |
#11
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Vitamin K2(Menatetrenone)
I received my stock of Menatetrenone this week.I ordered it from an online Chemist and received it 10 days after the order was placed.The cost was $63 US per hundred capsules.I will keep you informed as to how things go.My doctor was quite supportive.
Regards Brian Mullan |
#12
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Vitamin
Thank you for sharing alternative methods. Please continue to share your experiences as I would like to hear more about your experiences. In the meanwhile, if I am able to explore other avenues of other methods, I will put my findings on the forum as well.
Best of luck with the vitamins. -June Choi |
#13
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vitamin vk2
I have taken menatetrenone for the last 11 weeks but unfortunately my disease has progressed to AML and I will commence chemotraphy this week.I said I would report back as to how I went taking the VK2.My counts were very bad when I started Haem 90,WCC .7 Neut .3 and Platelets 14 and I needed transfusions weekly to keep them at those levels.I think it could have worked if I had started earlier????????
God Bless and Good Luck Brian Mullan |
#14
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Ken,
I was just diagnosed last month, and am interested in pursuing the K2 treatment. I also have Post Polio Syndrome and the dr I see for that has me on 7200 mg of D3 to treat the symptoms of that. After my MDS dx, he also suggested I check out K2. I found the Japanese studies and a source of K2, and joined this forum for the express purpose of asking if anyone had tried it. Was thrilled to find this tread! It's been almost a year now since your initial post -- what result have you experienced?
__________________
Darla, dx MDS (RARS) in Dec 2007, currently on vitamin B6 and procrit. |
#15
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Any thing new?
Hi all,
My Mom (81 years) has early MDS. I've read about the Japanese and Dutch studies regarding K2 therapy but there hasn't been anything new for years. I also noticed that the last post here was on Jan 31 2008 and it is now April 2009. I was wondering how Ken was doing after all this time. I was also hoping Brian and Darla are doing well. Good Luck to you. Does anyone have any more info on K2 & D3 treatments? |
#16
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Quote:
Von Hamrick (MDS-RAEB) |
#17
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To Ken Whiteman
Ken are you still on K2. Is it helping. Let us know how you are doing>
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#18
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Interesting,, have people thought of finding out which foods those vitamins are in and just eating the foods instead? The body might absorb the vitamins better that way. For example vit K is in Kale, and vit D is in mushrooms,,,,, I am starting to increase those in my diet after reading this.
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#19
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The challenge with getting this much vitamin K2 in food is that it would take roughly 40 cups of Kale to reach the 45 grams of Vitamin K2 that was taken in the trials done in Japan. The vitamin D3 can be obtained by hanging out in the sun for about 20-30 minutes without sunscreen. Even if your body only needed 1/4 of the kale as was needed in pill form it would require about 10 cups a day. Being a fan of leafy green vegetables, it is hard for me to fathom 10 cups of kale in a week, much less each day.
it is a good thought and shouldn't discourage people from trying to get as much as possible through natural sources though.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body. |
#20
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I though it was 45 mg of K. And of that, not all of the vitamin k in the supplement taken will be absorbed. Absorption will depend on how well each persons digestive system is functioning. This is true for food too.
Be sure to include herbs, fresh and dried, in your meals. Basic, thyme, , oregano, sage, cilantro, parsley, marjoram, dandelion, etc have lots of nutrients in addition to vitamin K. They have anti-microbial properties as well.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#21
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Marlene,
Thank you for correcting me, you are right, it is 45mg. Fortunately, my calculation still holds because there are 1147 micrograms in a cup of kale. I meant to put 45mg, but goofed. Grams sounds so much more grand.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body. |
#22
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Yes....that's still a lot of kale .
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#23
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Even *I* don't like kale that much, and I sure do love kale!
FYI - vitamin D is known to be harmful to people with sarcoidosis. It is thought that it could be bad for people with autoimmune diseases in general, because part of the problem seems to be a dysregulation of the body's vitamin D. My treatment includes avoidance of vitamin D, and sun. Also when you take certain drugs like cyclosporin, you're supposed to avoid sun due to an increased risk of skin cancer due to the immune suppression. Deb |
#24
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vitamin D regulates the immune system. I heard it was good for people with auto immune diseases.... I was taking it all last week and seen improvements in my RBC counts... I sent my boyfriend to buy more cause I only had a week supply..... I sure hope it works!
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#25
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Yes to Kale
Yes my doctor said vitamins are more readily absorbed through what you eat. He is a specialist so he would know. Kale is good, Good Luck
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