Myelofibrosis

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RE: Myelofibrosis

by dnewman80 on Fri Feb 17, 2017 10:09 AM

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Hi all,

Just thought I'd let you know that I've just put up another post, this one is dedicated to my wonderful daughter, Jarrah.

Regards,
Dane. 

RE: Myelofibrosis

by GXK0017 on Fri Feb 17, 2017 01:42 PM

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I went to gym straight from my doctor's appointment yesterday! I sit at a computer all day long, and I also work from home so it's very easy to turn into a sloth. I've never been heavy per se, but I have put on about 15 pounds in the last two years. Since Christmas, I've lost almost 10. And I'd like to lose at least another five to be comfortable. I have always been a junkfood junkie, and now I think before I put something in my mouth. I love chocolate, but now I only eat one square of good dark chocolate, and that satisfies me. I make sure that I space out all of my supplements because I think that also was giving me problems. Things that I should take on an empty stomach I wasn't. I also take a Neprinol, which is a fibrin defense. I usually take vitamin C in a powder form that I purchased from Amazon. It's pharmaceutical grade. I know that the Lipsomal is the best, but it's expensive. I do keep capsules of that on hand for when I travel. Because I don't think it's a good idea to try to take a large quantity of white powder through TSA !!! Also, I live in dreary Ohio where Vit D is in short supply... supplements are a must!!! Gretchen

RE: Myelofibrosis

by DarylB on Fri Feb 17, 2017 05:15 PM

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I think consistant exercise is one of the major contributing factors that is keeping me going.  My RBC is severe anemia and the doctor attributes my ability to work a full day, do yard work, etc. to my exercise routine.  I walk at least 2.2 to 3.5 miles 6 days a week and lift weights, etc. 3-4 days a week. 

What I really need though is a protocol that will help me get my RBCs up and maintain them there...haven't been able to figure that out yet.

Daryl

RE: Myelofibrosis

by DarylB on Fri Feb 17, 2017 05:22 PM

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Gretchen,

my job keeps me behind a computer as well for the most part.  What I have done is purchased a VARIDESK sit to stand unit so now instead of sitting for prolonged periods I stand -- much better for you.  Just a thought.

Daryl

RE: Myelofibrosis

by AllGoodWays on Fri Feb 17, 2017 07:06 PM

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On Feb 17, 2017 5:22 PM DarylB wrote:

Gretchen,

my job keeps me behind a computer as well for the most part.  What I have done is purchased a VARIDESK sit to stand unit so now instead of sitting for prolonged periods I stand -- much better for you.  Just a thought.

Daryl

Good idea Daryl,

I have my laptop on an old metal dish drying rack 5 inches about the table top so that when I sit the screen is at eye level. I just checked and find I can easily stand and tilt the screen back! (DIY alternative)! Will try to remember to stand every twenty minutes for about five minutes or so.

Roger

RE: Myelofibrosis

by kelso on Sun Feb 19, 2017 07:29 PM

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Daryl,   Sodium Selenite (liquid form) is improving my Rbc and hemoglobin test after test.

Gretchen,  Actually took the bags of white powder (ascorbic acid) and made it through TSA on my recent trip to Florida.Came back to 14 inches of snow on drearier Long Island.

                                              Jon

RE: Myelofibrosis

by AllGoodWays on Sun Feb 19, 2017 08:04 PM

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On Feb 17, 2017 1:42 PM GXK0017 wrote:

I went to gym straight from my doctor's appointment yesterday! I sit at a computer all day long, and I also work from home so it's very easy to turn into a sloth. I've never been heavy per se, but I have put on about 15 pounds in the last two years. Since Christmas, I've lost almost 10. And I'd like to lose at least another five to be comfortable. I have always been a junkfood junkie, and now I think before I put something in my mouth. I love chocolate, but now I only eat one square of good dark chocolate, and that satisfies me. I make sure that I space out all of my supplements because I think that also was giving me problems. Things that I should take on an empty stomach I wasn't. I also take a Neprinol, which is a fibrin defense. I usually take vitamin C in a powder form that I purchased from Amazon. It's pharmaceutical grade. I know that the Lipsomal is the best, but it's expensive. I do keep capsules of that on hand for when I travel. Because I don't think it's a good idea to try to take a large quantity of white powder through TSA !!! Also, I live in dreary Ohio where Vit D is in short supply... supplements are a must!!! Gretchen

Hi, Gretchen,

Why don't you make your own liposomal vitamin C. I do! You simply look on youtube about liposomal vitamin C, reading all the comments for ideas, then buy a jewellery cleaner.

I use organic sunflower lecithin. I don't trust soya. It is mostly waste product!

There are several different methods of making this but discuss it here and online and you may even improve on it! You can then add other things as I do like curcumin!

RE: Myelofibrosis

by AllGoodWays on Mon Feb 20, 2017 11:04 AM

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On Feb 19, 2017 8:04 PM AllGoodWays wrote:

On Feb 17, 2017 1:42 PM GXK0017 wrote:

I went to gym straight from my doctor's appointment yesterday! I sit at a computer all day long, and I also work from home so it's very easy to turn into a sloth. I've never been heavy per se, but I have put on about 15 pounds in the last two years. Since Christmas, I've lost almost 10. And I'd like to lose at least another five to be comfortable. I have always been a junkfood junkie, and now I think before I put something in my mouth. I love chocolate, but now I only eat one square of good dark chocolate, and that satisfies me. I make sure that I space out all of my supplements because I think that also was giving me problems. Things that I should take on an empty stomach I wasn't. I also take a Neprinol, which is a fibrin defense. I usually take vitamin C in a powder form that I purchased from Amazon. It's pharmaceutical grade. I know that the Lipsomal is the best, but it's expensive. I do keep capsules of that on hand for when I travel. Because I don't think it's a good idea to try to take a large quantity of white powder through TSA !!! Also, I live in dreary Ohio where Vit D is in short supply... supplements are a must!!! Gretchen

Hi, Gretchen,

Why don't you make your own liposomal vitamin C. I do! You simply look on youtube about liposomal vitamin C, reading all the comments for ideas, then buy a jewellery cleaner.

I use organic sunflower lecithin. I don't trust soya. It is mostly waste product!

There are several different methods of making this but discuss it here and online and you may even improve on it! You can then add other things as I do like curcumin!

Astaxanthin is recommended here by Dr Mercola as being the ultimate antioxidant. This also, he says,  combats radiation. As radiation is one possible cause of MF I think this is rather interesting.  

http://articles.mercola.com/sites/articles/archive/2017/02/2

I am about to purchase this from iHerb: 

http://uk.iherb.com/tr/cb?pcodes=MCL-01304

RE: Myelofibrosis

by AllGoodWays on Thu Feb 23, 2017 09:26 AM

Quote | Reply

On Feb 20, 2017 11:04 AM AllGoodWays wrote:

On Feb 19, 2017 8:04 PM AllGoodWays wrote:

On Feb 17, 2017 1:42 PM GXK0017 wrote:

I went to gym straight from my doctor's appointment yesterday! I sit at a computer all day long, and I also work from home so it's very easy to turn into a sloth. I've never been heavy per se, but I have put on about 15 pounds in the last two years. Since Christmas, I've lost almost 10. And I'd like to lose at least another five to be comfortable. I have always been a junkfood junkie, and now I think before I put something in my mouth. I love chocolate, but now I only eat one square of good dark chocolate, and that satisfies me. I make sure that I space out all of my supplements because I think that also was giving me problems. Things that I should take on an empty stomach I wasn't. I also take a Neprinol, which is a fibrin defense. I usually take vitamin C in a powder form that I purchased from Amazon. It's pharmaceutical grade. I know that the Lipsomal is the best, but it's expensive. I do keep capsules of that on hand for when I travel. Because I don't think it's a good idea to try to take a large quantity of white powder through TSA !!! Also, I live in dreary Ohio where Vit D is in short supply... supplements are a must!!! Gretchen

Hi, Gretchen,

Why don't you make your own liposomal vitamin C. I do! You simply look on youtube about liposomal vitamin C, reading all the comments for ideas, then buy a jewellery cleaner.

I use organic sunflower lecithin. I don't trust soya. It is mostly waste product!

There are several different methods of making this but discuss it here and online and you may even improve on it! You can then add other things as I do like curcumin!

Astaxanthin is recommended here by Dr Mercola as being the ultimate antioxidant. This also, he says,  combats radiation. As radiation is one possible cause of MF I think this is rather interesting.  

http://articles.mercola.com/sites/articles/archive/2017/02/2 0/astaxanthin-whole-body-benefits.aspx?utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20170220Z2&et_cid=DM134538&et_rid=1893802235"" target="_blank" rel="nofollow">http://articles.mercola.com/sites/articles/archive/2017/02/2 target="_blank" rel="nofollow">http://articles.mercola.com/sites/articles/archive/2017/02/2

I am about to purchase this from iHerb: 

http://uk.iherb.com/tr/cb?pcodes=MCL-01304 "" target="_blank" rel="nofollow">http://uk.iherb.com/tr/cb?pcodes=MCL-01304 " target="_blank" rel="nofollow">http://uk.iherb.com/tr/cb?pcodes=MCL-01304

I feel reluctant to take these high doses of selenium. They make me feel nauseous and so I looked online at the Pauling Institute site. It also says that if you have a tendency to diabetes 2 not to take a selenium supplement. I am thinking that, because my platelets improved without taking selenium, but, instead, taking enzymes, multivitamins (and now a Mercola probiotic) with the liposomal C (containing curcumin) that I will continue to ease up on this or take smaller doses. 

http://lpi.oregonstate.edu/mic/minerals/selenium

Roger

RE: Myelofibrosis

by kelso on Fri Feb 24, 2017 05:48 AM

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I was always under the impression that small doses of selenium, actually sodium selenite,not selenate,would keep the Rbc and hemo in  check. I have never felt nauseous in taking this at bedtime and those numbers are always very good. What else is there to take  to keep those bloods  right ?   Very confused.  Thought  that vitamin C was for spleen and bicarb for overall acidity thing.   Currently on vit.b12, vit d, vit e, omega 3, 30 grams vit c, turmeric and curcumin, magnesium, and a multi vitamin. For what it is worth, I saw one those one hour tv (on paid tv chanells) about the benefits of curcummin. On three occasions  it was said that curcumin,magnesium, and vitamin d would keep leukemia in check. Again,for what it's worth. 

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