Myelofibrosis

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RE: Myelofibrosis

by Jri638a on Wed Sep 28, 2016 12:49 PM

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The protocol I use is based on my findings on net (i.e. what reduces inflammation and what has in research been proven to have an effect etc) and also based on tips from other forum members that I have read more on. Protocol not published or definite (I have changed it over time based on knowledge and based on long time of consumption i.e. reduced selenium a bit). I assume lot of us on forum use similar protocol with some deviances when it comes to how much and which preparates.

A tip is to start by reading my previous posts (click on my user name and go from there). If you cant get it together I may take the time to write down my current protocol.

BR Johnny

RE: Myelofibrosis

by Mlupita on Wed Sep 28, 2016 02:18 PM

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It looks like we have a good place to start and that we will be busy doing some reading and research. I'm sure there will be more questions that follow, and I thank everyone for giving us a real place to come for answers and support.....thank you!

RE: Myelofibrosis

by Lainela on Wed Oct 05, 2016 02:16 PM

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On Sep 28, 2016 2:18 PM Mlupita wrote:

It looks like we have a good place to start and that we will be busy doing some reading and research. I'm sure there will be more questions that follow, and I thank everyone for giving us a real place to come for answers and support.....thank you!
Hi everyone. My husband is using for more than month pure vitamin C powder with orange juice. He takes 6 g 5 times in a day. Now we check blood results but without any changes. How long we should take vitamin C to see some improvments? Please be so kind and share your expierence. Il be very thankful. Laine

RE: Myelofibrosis

by logansuma on Wed Oct 05, 2016 06:57 PM

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Hi Laine,

Is your husband feeling better?  That's the first thing that happened for me..I felt soooo much better ..lost my bruises....my veins seemed to be stronger..didn't blow when getting stuck...more energy.   I've been using the protocol for 2 months now. Started with lyposoming and taking 24G of vit. c. then added selenium up to 3,500 mcg.  Just got Dalt's selenium today, before took Twin Labs Selenium Selenite.  Started potassium citrate instead of sodium bicarb for ph.  Today, I 'm starting on curcumin tea.

Have seen some improvement in blood levels wbcs almost normal,  rbcs still anemic but have gone up from 9.4 to 10.5.  Platelets pretty stable at 542. Been off hydroxura since end of july, 2016.  But my labs weren't horrible when first diagnosed.  I had ET for almost 20 years.  First, I took interferon for 3 yrs. and then hydroxurea for 16 yr.  I was so concentrating on my platelets that my anemia almost went unnoticed.  

I think of this as a journey....I think I can do it forever, as long as it keeps me feeling good.  So don't give up... try selenium selenite and the rest of the protocol.

Good luck and good health.  Jan 

RE: Myelofibrosis

by Mlupita on Sat Oct 08, 2016 07:40 PM

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Hi Everyone (again)- Was reading on the Bloodwise.org.uk site, that once diagnosed a patient should have "a consultant, clinical nurse specialist & a multidisciplinary team" and was wondering if that was also the case, here in the States? My Dad (recently diagnosed) doesn't seem to have any of that. His hemo/onc was going to see if he could start him on Jakafi, and then it more or less was delivered, no follow up, no verbal instructions, no you need to have blood Eval in so many days, no communication that it was even approved (from his hemo/onc). So I'm questioning....did he have a memory lapse about this (he is 79), but seems to be pretty in control and for the most part on top of things when we talk, or was he just overwhelmed after the diagnosis, could it be a symptom, did my Dad just somehow fall thru the cracks, or is this how his Dr. treats his patients? Of course I cannot follow-up with the Dr. until he formally lets the dr. & staff know that they can talk to me (as I live in another state and have not been with him to any appts.). Also, is there some tricks to using this board? I have responded to 2 private messages sent to me and have not heard back from either person. I have discovered that I must use my computer to send private messages (as opposed to my iPad or laptop), but once sent, the board tells me message sent, and still no response (so please forgive me if you are waiting for me to respond). Thanks for any and all help! -Lupita

RE: Myelofibrosis

by DizDis on Sun Oct 09, 2016 12:45 AM

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Hi.  I'm using the curcumin/turmeric combo along with Vitamin C.  I am wondering if you have experienced yellowing of your skin while on this protocol.  How long have you been using it and have you noticed any improvement?  I was using capsules, but have started mixing it according to your suggestion.

Thanks,

Nadya

RE: Myelofibrosis

by Lainela on Sun Oct 09, 2016 09:22 AM

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On Oct 05, 2016 7:29 PM AllGoodWays wrote:

On Oct 05, 2016 2:16 PM Lainela wrote:

On Sep 28, 2016 2:18 PM Mlupita wrote:

It looks like we have a good place to start and that we will be busy doing some reading and research. I'm sure there will be more questions that follow, and I thank everyone for giving us a real place to come for answers and support.....thank you!
Hi everyone. My husband is using for more than month pure vitamin C powder with orange juice. He takes 6 g 5 times in a day. Now we check blood results but without any changes. How long we should take vitamin C to see some improvments? Please be so kind and share your expierence. Il be very thankful. Laine

Hi, Lainela,

I agree with Jan. I started off with the itching. As soon as I took the large dose Liposomal C the itching went. I wrote this on MPN-NET, the myelofibrosis website (very politically correct). They said I wasn't allowed to write this as it hadn't been tested. As a matter of fact someone picked up on this and emailed me to say that he suddenly recalled that when he had had IV Vitamin C injections his itching had gone too. I no longer even look at that website because they all seem to be complaining about side effect etc. and never getting anywhere.

I was diagnosed by chance in 2011 I have not got any worse even though I take the vitamin C in bursts and then leave off. After taking the Selenium (obtained from Richard - Dalt1) (and not taking this religiously, either) my platelets have improved.

I would say it is worth believing in it, myself - (and probably getting the proportions and timings really right too!)

Best wishes,

Roger

Thank you for all replies. :) We stoped to use roferon A in july.

Now from august 28 we are using vitamin C and selen. The energy is back, he is feeling realy good. When he started to use roferon he became sleepy, but no more. When he start to use C vitamin burning in stomach disappeared. Now we just waiting results from platelets and hemoglobin. 

I found information about dandelion roots. Here you can find more information:

http://healtheternally.com/1562/dandelion-weed-can-boost-you

RE: Myelofibrosis

by Lainela on Sun Oct 09, 2016 09:39 AM

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On Oct 09, 2016 9:22 AM Lainela wrote:

On Oct 05, 2016 7:29 PM AllGoodWays wrote:

On Oct 05, 2016 2:16 PM Lainela wrote:

On Sep 28, 2016 2:18 PM Mlupita wrote:

It looks like we have a good place to start and that we will be busy doing some reading and research. I'm sure there will be more questions that follow, and I thank everyone for giving us a real place to come for answers and support.....thank you!
Hi everyone. My husband is using for more than month pure vitamin C powder with orange juice. He takes 6 g 5 times in a day. Now we check blood results but without any changes. How long we should take vitamin C to see some improvments? Please be so kind and share your expierence. Il be very thankful. Laine

Hi, Lainela,

I agree with Jan. I started off with the itching. As soon as I took the large dose Liposomal C the itching went. I wrote this on MPN-NET, the myelofibrosis website (very politically correct). They said I wasn't allowed to write this as it hadn't been tested. As a matter of fact someone picked up on this and emailed me to say that he suddenly recalled that when he had had IV Vitamin C injections his itching had gone too. I no longer even look at that website because they all seem to be complaining about side effect etc. and never getting anywhere.

I was diagnosed by chance in 2011 I have not got any worse even though I take the vitamin C in bursts and then leave off. After taking the Selenium (obtained from Richard - Dalt1) (and not taking this religiously, either) my platelets have improved.

I would say it is worth believing in it, myself - (and probably getting the proportions and timings really right too!)

Best wishes,

Roger

Thank you for all replies. :) We stoped to use roferon A in july.

Now from august 28 we are using vitamin C and selen. The energy is back, he is feeling realy good. When he started to use roferon he became sleepy, but no more. When he start to use C vitamin burning in stomach disappeared. Now we just waiting results from platelets and hemoglobin. 

I found information about dandelion roots. Here you can find more information:

http://healtheternally.com/1562/dandelion-weed-can-boost-you r-immune-system-and-cure-cancer/?utm_source=jdt&utm_medium=Facebook&utm_campaign=main&src=jdt"" target="_blank" rel="nofollow">http://healtheternally.com/1562/dandelion-weed-can-boost-you target="_blank" rel="nofollow">http://healtheternally.com/1562/dandelion-weed-can-boost-you

There is  one more interesting information about dandelion benefits. :)

http://www.naturalhealth365.com/benefits-of-dandelion-tea-ca

RE: Myelofibrosis

by logansuma on Sun Oct 09, 2016 07:46 PM

Quote | Reply

On Oct 08, 2016 7:40 PM Mlupita wrote:

Hi Everyone (again)- Was reading on the Bloodwise.org.uk "" target="_blank" rel="nofollow">http://Bloodwise.org.uk " target="_blank" rel="nofollow">Bloodwise.org.uk site, that once diagnosed a patient should have "a consultant, clinical nurse specialist & a multidisciplinary team" and was wondering if that was also the case, here in the States? My Dad (recently diagnosed) doesn't seem to have any of that. His hemo/onc was going to see if he could start him on Jakafi, and then it more or less was delivered, no follow up, no verbal instructions, no you need to have blood Eval in so many days, no communication that it was even approved (from his hemo/onc). So I'm questioning....did he have a memory lapse about this (he is 79), but seems to be pretty in control and for the most part on top of things when we talk, or was he just overwhelmed after the diagnosis, could it be a symptom, did my Dad just somehow fall thru the cracks, or is this how his Dr. treats his patients? Of course I cannot follow-up with the Dr. until he formally lets the dr. & staff know that they can talk to me (as I live in another state and have not been with him to any appts.). Also, is there some tricks to using this board? I have responded to 2 private messages sent to me and have not heard back from either person. I have discovered that I must use my computer to send private messages (as opposed to my iPad or laptop), but once sent, the board tells me message sent, and still no response (so please forgive me if you are waiting for me to respond). Thanks for any and all help! -Lupita

Hi Lupita, Don't think your Dad fell through the cracks.  I think the hemo/oncologists feel like there isn't much to do for MF and just kind of wish we would go away.  I've had the same doctor for years with my ET and once I was diagnosed with MF, he had a whole different attitude towards me... At least that's how I felt.  He didn't want me taking Jakafi, said there were too many side effects,  said I could take prednisone and protomix for gerd (from the prednisone?)  Anyway, I felt hopeless until I found Dalt's story on ehealth.  I feel the protocol is the only answer, at least for me.  I am interested in prm-151.  Don't know how the others feel about it.  

RE: Myelofibrosis

by Jri638a on Mon Oct 10, 2016 10:37 AM

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Hi Nadya,

Turmeric can cause yellowing of your skin due to that it contains lot of beta carotene. Eating loads of carrot (which also contains beta carotene) can also cause the same. This is not dangerous and it will disappear if/when you end using turmeric.

I use Vitamin C and Curcumin/Turmeric both in large doses and I do not experience yellow skin. I have used mega dosing of Vitamin C since December 2015 and curcumin/turmeric for 4-5 months. I also combine with lots of other vitamins but those in more normal doses. Expect nothing else than that it takes time to get improved health although some experience quick changes at the initial phase of starting to mega dose Vitamin C.
I have improved my health from having a constant decline in blood values for 1 1/2 year (from first blood test to last test before I started consuming vitamin C and other vitaminerals 2 weeks after I was diagnosed with MF) to having improved blood values with each test with one exception. My blood platelets were 927 at peak and now down to 550. My energy is way better. Using curcumin/turmeric is a long process before any major changes (expect at least 6-12 months).

Note that as curcumin/turmeric “takes care” of your bad stem cells this may actually mean that production of all blood cells decrease, since less stem cells in overall, this could by doctors be an indication of that your MF is progressing. I had one drop in blood values followed with a significant improvement with the following blood test which from my view confirms this.

Note that the dose on curcumin is important, having to low dose won’t bring any major result. I read that a dose of 6 grams curcumin / days is a good dose (I take 3,5 gr turmeric (1 tea spoon) + 1,75 gr curcumin (1/2 tea spoon) with black pepper and virgin olive oil mixed with hot water 3 times a day which should be about 6 gr pure curcumin.

BR Johnny

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