Myelofibrosis

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RE: Myelofibrosis

by jeff3 on Thu Oct 25, 2018 03:59 PM

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Lainela, here is a link to further understand transferrin:

http://www.irondisorders.org/absorption/

Roger your correct about the confusion regarding nutritional levels needed for health. Around 1999, Dr. Atkins wrote "Dr. Atkins' Vita Nutrient Solution". I read it in 2001 and noted  it's a comprehensive book focused on forms and levels of nutrients the body needs to avoid deficiencies and is written in a straight forward manner. I don't see it in the local book stores but it is available online. He is still relevent today.

RE: Myelofibrosis

by Lainela on Fri Oct 26, 2018 07:53 AM

Quote | Reply

Thank you, Jeff. 

Im just searching all information that can be useful to us.

Now im thinking to start use chlorophyllin.

https://lpi.oregonstate.edu/mic/dietary-factors/phytochemica

And here is one info about TSY-1 (Tianshengyuan-1):

https://www.newsmax.com/health/health-news/bone-marrow-chine

Are you and Roger in Facebook? If not, then its worth to register there just because of Myelofibrosis Private Support Group. You will find so many useful information wich can help us to beat MF. 

RE: Myelofibrosis

by Stimme on Fri Oct 26, 2018 08:22 AM

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On Oct 25, 2018 3:59 PM jeff3 wrote:

Lainela, here is a link to further understand transferrin:

http://www.irondisorders.org/absorption/ "" target="_blank" rel="nofollow">http://www.irondisorders.org/absorption/ " target="_blank" rel="nofollow">http://www.irondisorders.org/absorption/

Roger your correct about the confusion regarding nutritional levels needed for health. Around 1999, Dr. Atkins wrote "Dr. Atkins' Vita Nutrient Solution". I read it in 2001 and noted  it's a comprehensive book focused on forms and levels of nutrients the body needs to avoid deficiencies and is written in a straight forward manner. I don't see it in the local book stores but it is available online. He is still relevent today.

Jeff, I have the Dr Atkins book. I agree it is good. It even updates Dr Abnram Hoffer's niacin research for schizophrenia rather effectively!

I think we need to study the iron factor more closely. I seem to have read that it is possible to have iron levels over the safety mark and still be anaemic! My consultant said that the anaemia in MF is not resolved by taking more iron! That is why I have been taking B12 instead!

Any updates on that?

RE: Myelofibrosis

by jeff3 on Fri Oct 26, 2018 12:43 PM

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Glad you have the Atkins' book. Have you had a B12 test? 

https://www.b12-vitamin.com/deficiency-test/

RE: Myelofibrosis

by jeff3 on Fri Oct 26, 2018 12:50 PM

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Lainela, I'm not useing Facebook. Geron is testing a TSY-1 based product called Imetelstat. Here is a link:

http://ir.geron.com/news-releases/news-release-details/geron

Seems they have some kinks to work out however it could be a 2019 winner.

RE: Myelofibrosis

by Stimme on Fri Oct 26, 2018 01:24 PM

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On Oct 26, 2018 12:43 PM jeff3 wrote:

Glad you have the Atkins' book. Have you had a B12 test? 

https://www.b12-vitamin.com/deficiency-test/ "" target="_blank" rel="nofollow">https://www.b12-vitamin.com/deficiency-test/ " target="_blank" rel="nofollow">https://www.b12-vitamin.com/deficiency-test/

No B12 Test. I had a Vit D test a couple of years back and was fine, apparently. I have some ph testers but, no B12 test yet!

Meanwhile, here is a useful list of drug, herb, vitamin interactions for anyone taking medications!

http://www.nutritional-solutions.net/images/phocadownload/Rx

RE: Myelofibrosis

by Stimme on Fri Oct 26, 2018 01:27 PM

Quote | Reply

On Oct 26, 2018 1:24 PM Stimme wrote:

On Oct 26, 2018 12:43 PM jeff3 wrote:

Glad you have the Atkins' book. Have you had a B12 test? 

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No B12 Test. I had a Vit D test a couple of years back and was fine, apparently. I have some ph testers but, no B12 test yet!

Meanwhile, here is a useful list of drug, herb, vitamin interactions for anyone taking medications!

http://www.nutritional-solutions.net/images/phocadownload/Rx _DepleteInteractions.pdf"" target="_blank" rel="nofollow">http://www.nutritional-solutions.net/images/phocadownload/Rx target="_blank" rel="nofollow">http://www.nutritional-solutions.net/images/phocadownload/Rx

Did you say you don't have his book, Jeff?

There are plenty of current links e.g.

https://www.amazon.co.uk/Dr-Atkins-Vita-Nutrient-Solution-Fi

RE: Myelofibrosis

by Lainela on Fri Oct 26, 2018 03:42 PM

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This is question for all.

Do you know what kind of gene mutations you have? 

RE: Myelofibrosis

by Stimme on Fri Oct 26, 2018 06:47 PM

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On Oct 26, 2018 3:42 PM Lainela wrote:

This is question for all.

Do you know what kind of gene mutations you have? 

Lainela you are stretching my brain! The answer is - I haven't a clue!

RE: Myelofibrosis

by Lainela on Fri Oct 26, 2018 07:32 PM

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I mean JAK2, CARL, TET2, ASXL, TP53 - its all mutations found in MF. Each of this mutations means something, it can tell how MF can progress, how fast. So its really important to know wich of all this you have to help doctors find the best medication for you. 

As I understand CARL mutation is the "best" from all mutations found in MF.

Do not be misled, this is a serious disease, it requires proper attention.

As we live in Latvia, our doctors dont offer tests to check wich mutations we have. We will go to Germany to make all necessary tests.

Even if now we feel very good,  are using all this supplements about whom we are talking, I really want to be sure that we are doing all the necesarry things to get out from this. 

There is evidence how diet can imporve overall health and suppress symptoms of MF, as well evidence how doing yoga daly can also suppress symptoms and improve daly life. 

https://www.curetoday.com/articles/investigating-diet-and-nu

https://www.raredr.com/conferences/asco2017/yoga-mpns

https://www.mdedge.com/fedprac/clinical-edge/summary/hematol

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