Myelofibrosis

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RE: Myelofibrosis

by didi5 on Tue Jan 31, 2017 02:24 PM

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My WBC was up to 80,000, now at 20,000, my spleen has gone down. My platelets are now in the normal range. I feel fine.

RE: Myelofibrosis

by HelderAbreu on Tue Jan 31, 2017 02:58 PM

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Thank you.

I hope that will work with my mother too.

RE: Myelofibrosis

by HelderAbreu on Wed Feb 01, 2017 01:52 AM

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Sorry. And your hemoglobin? Do you need blood transfusions?

Thank you.

RE: Myelofibrosis

by didi5 on Wed Feb 01, 2017 02:49 AM

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No I've never had a blood transfusion...when I was diagnosed with polycythemia Vera in 2007 I'd have phlebotomy 's every few months...then in 2010 I was diagnosed with myelofibrosis...since then I've had maybe 4 phlebotomy's..

RE: Myelofibrosis

by dnewman80 on Wed Feb 01, 2017 10:48 AM

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On Jan 21, 2017 2:07 AM dnewman80 wrote:

Hi all,

I'm new to this forum and I'm not really sure how to post on this discussion, except for 'Quote' or 'Reply'. So hope you don't mind that I'm pseudo-replying to your message Jon.

The reason I'm posting is that I've started a new blog that some of you might be interested in. I'm a 36 year old Australian who was diagnosed with myelofibrosis over seven years ago. Next month I will be going in for a bone marrow transplant with the hope of curing me from this disease. 

I thought it would be a good idea to start a blog to tell my story. So here it is:

Feel free to pass it on to whomever you think might be interested.

Best wishes,
Dane. 

Another post is up on my blog. This one is dedicated to my beautiful wife Nicole and our relationship with MF:

https://dnewman80.wixsite.com/mfandme " target="_blank" rel="nofollow">https://dnewman80.wixsite.com/mfandme

Best wishes,

Dane.

RE: Myelofibrosis

by DizDis on Fri Feb 10, 2017 07:03 PM

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Hi Roger,

I'm still using Dalt's protocol and wondering whether you know anything about using that as well as circumin.  Any info on contraindications to using them both simultaneously?

Thanks,

Nadya

RE: Myelofibrosis

by Derik on Sun Feb 12, 2017 02:52 PM

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On Feb 10, 2017 10:52 PM AllGoodWays wrote:

On Feb 10, 2017 7:03 PM DizDis wrote:

Hi Roger,

I'm still using Dalt's protocol and wondering whether you know anything about using that as well as circumin.  Any info on contraindications to using them both simultaneously?

Thanks,

Nadya

Hi, Nadya,

I know of no contraindications between the protocol and curcumin. In fact, I have recently been putting up to a tablespoon of curcumin in my liposomal mixture:

ie. 4 1/4 tbls of organic sunflower lecithin + 2 cups water soaked and blended ... add three tbls sodium ascorbate (vit C) with 1 tblsp acerola (natural vit C) + 1 tblsp sodium bicarbonate + 1 tblsp curcumin with pepper and ginger (a special product) and 1 cup of water, all blended then and into jewelry cleaner for 8 minutes. 

I then mix half a glass of vegetable juice with half a glass of the mixture and consume this as and when. I also take a multi vitamin, a special probiotic from Dr Mercola and some enzymes. I stopped taking the selenium a couple of months back because it was making me nauseous and my platelets still improved!

I am considering adding sweet wormwood. I don't just stick to one protocol, myself. I prefer to change multivitamins occasionally and add or change other supplements as I am impressed by their write-ups. I also eat organic veg, salad and fruit and nuts, corn bread, not wheat bread, but like my coffee and occasional red wine.

Inconsistent or inspired? - take your pick (probably a bit of one and a bit of the other!).

How are you doing, Nadya? Are you making your own liposomal C? Are you being consistent (unlike me)? Any signs of improvement yet (official or felt)? Either way it can only do you good.

Best wishes,

Roger

Hi Roger

The fact that you dont use selenium anymore I understand that.Is selenium suppose to be good for high or low plateletscount?My count is to low.You say that your count is still improving.Your count to high or to low?

Greetings

Derik

RE: Myelofibrosis

by GXK0017 on Thu Feb 16, 2017 09:19 PM

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I have Essential Thrombocytosis, was diagnosed in 2009 after a high platelet count in a routine blood test, For the first six years, my hematologist simply had me taking a baby aspirin and having my platelets checked every six months. In 2015 they spiked over 1 million. Luckily, my doctor has a wait and see approach, versus immediately putting me on any medication. About a year ago, I found this website and this link. I started the protocol with the vitamin C, & sodium selenite. When I had my platelets checked three months later, they had dropped down to 789,000. When they were checked again last November they spiked to 1.1 million. My doctor said that this is my blood, and I will probably experience this roller coaster for the rest of my life. I started thinking back to what I was doing when the count always stayed well below 1 million. At that time I was exercising several times a week and in the last few years I've gotten rather lazy with that. I started going back to the gym three times a week, continuing to walk my dog 2 miles a day, and really watching what I eat. I cut out a ton of junk food and sugar. And Inc. much more fruit and vegetables. I'm still on the protocol, and I have also added turmeric and vitamin D. Today I had my check up. My platelets reduced by almost 50%. The count was 586,000. I cried tears of joy and hugged my doctor. We are all on this journey for life, and I think the one thing to remember is to never give up. Gretchen

RE: Myelofibrosis

by Monika16 on Thu Feb 16, 2017 09:37 PM

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Hello Gretchen, Itt is so very great to hear your story! :-) It gives hope to you and to any of us. I am on my jounrney with MF too with a very similar story as yours. I am not on the protocol but I am on my own protocol with only natural things and also keeping changing my lifestyle , eating well and also studying dietetics and wortrking in a shop with supplements and eco food - that is alll thanks to MF. I have good hope for the future. Anyhow very nice to hear stories like your. Just keep doing what you are doing. Hugs from Monika

RE: Myelofibrosis

by GXK0017 on Thu Feb 16, 2017 10:34 PM

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Thank you Monika!! Being informed and making your own choices is half the battle in my opinion
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