Myelofibrosis

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RE: Myelofibrosis

by dalt1 on Thu Jan 11, 2018 01:16 PM

Quote | Reply

On Jan 11, 2018 8:50 AM HelderAbreu wrote:

On jan 10, 2018 4:29 DarylB wrote:

My bottle of selenium, that I got from NORI, doesn't say anything about refigeration -- only warning it has is to not take in conjunction with Vit C ... which I don't pay much attention to (I just separate the Vit C dosages and the selenium by 7 hours).

I would be curious Richard, do you think selenium needs to be refrigerated?

Daryl

Hello.

How did you get the NORI selenium? I tried to contact them, but they said that can't sell to individual people.

Thank you.

Hi Daryl,

For four weeks after my initial MF diagnosis, I took selenium with my vitamin c and fresh orange juice. No side effects and my blood counts returned to normal. I think people are frightened with the amount of misinformation put out there.

Dalt

RE: Myelofibrosis

by dalt1 on Thu Jan 11, 2018 01:19 PM

Quote | Reply

On Jan 11, 2018 8:50 AM HelderAbreu wrote:

On jan 10, 2018 4:29 DarylB wrote:

My bottle of selenium, that I got from NORI, doesn't say anything about refigeration -- only warning it has is to not take in conjunction with Vit C ... which I don't pay much attention to (I just separate the Vit C dosages and the selenium by 7 hours).

I would be curious Richard, do you think selenium needs to be refrigerated?

Daryl

Hello.

How did you get the NORI selenium? I tried to contact them, but they said that can't sell to individual people.

Thank you.

I live in the tropics and have never refrigerated selenium. My main worry is some child visiting may think it is a bottle of water.

The smell some people are getting is dried selenium around the bottle top. This can oxidize to a brown colour and does smell. Just clean the top of the bottle or use another bottle.

RE: Myelofibrosis

by dalt1 on Thu Jan 11, 2018 01:25 PM

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On Jan 10, 2018 4:15 PM AllGoodWays wrote:

On Jan 06, 2018 1:34 AM dalt1 wrote:

On Jan 05, 2018 11:49 PM Terry77 wrote:

Hello ebyer,

I don't understand it when you say, "I have a hard time with the liquid selenium because even the smell of it makes me nauseous."

There's no smell or taste. Using the high concentration I have, I put 5 drops in a small glass of water and I wouldn't even know anything was in the water if somebody handed me the glass. 

And if the protocol is working well, then why would you stop it? And why are you adding raw garlic to anything? Who said to do that? Why not save the garlic for your evening dinner of shrimp scampi? 

Terry

Raw garlic is rich in B17 which is an effective cancer cure. However, B17 doesn't have any effect with MF or PV. Sometimes if one builds up with selenium too fast, they do get an aversion to the product even though it really doesn't have any smell or taste. 

When I first used selenium, I used 5ml per day from day one and it did cause nausea for at least one week untll my body became used to it. It did take me two years to mentally overcome my aversion to selenium. I persevered as I knew it was working.

Dalt

Hi, Richard,

Glad to see you are still keeping in here. I have kept my selenium in filtered water but out of the fridge for quite a long time. It was suggested that the smell that put me off was probably due to bacteria in the water. Do you suppose that is so? I still have some left because I haven't got a water tester yet. 

I recall you said it didn't need to be kept in a refrigerator but now I rather suppose you meant the selenium rather than the mixture in water!

Regards,

Roger

Hi Roger,

i am still here. Lately I have been away a lot with athletics and also visiting my older children who are working 1500 kilometres away (900 miles).

I still use selenium daily and never refrigerate it. If I start getting a smell, I replace the bottle.

Selenium is anti viral and anti Baterial so the chance of bacteria surviving in your selenium is nil.

My older son who is a lawyer has just moved to the UK for several years. I may visit next year and maybe, time permitting, we can meet up.

Dalt

RE: Myelofibrosis

by Carla3 on Sat Jan 13, 2018 02:55 AM

Quote | Reply
Good Evening Friends, I am hoping I can gets some feedback regarding the protocol my sister has been on for approximately 4 months for ET. She started Richards protocol with pharmaceutical grade Vitamin C, Selenium and bicarb. She was a bit overzealous initially and worked up to 24 grams vitamin C and had severe abdominal pain with intestinal issues. she had such distress that she ended up in emergency. The good news was her platelets went down 85,000 within a very short period of time. She waited 3 weeks to start again and went very slowly but between the gas from the bicarb and Vitamin C intestinal distress she was able to get to 30 grams but not maintain as it caused such abdominal distress. After much research she decided to try the liposomol. She is taking 16 (500mg) pills which equals 8grams, but according to what ive read it's potency is 5 times that of the powder. So I consider that to be 40grams . Her Daily nerve pain from post shingles that she had 4 years ago has been worse also. Platelets were 706,000 Nov 30, gone up to 726,000. For those taking the liposomol is she taking the right doseage? Any suggestions would be so appreciated. She is getting discouraged. Thank you very much for any recommendations or suggestions. Grateful for this site! Carla

RE: Myelofibrosis

by AllGoodWays on Sat Jan 13, 2018 08:41 AM

Quote | Reply

On Jan 13, 2018 2:55 AM Carla3 wrote:

Good Evening Friends, I am hoping I can gets some feedback regarding the protocol my sister has been on for approximately 4 months for ET. She started Richards protocol with pharmaceutical grade Vitamin C, Selenium and bicarb. She was a bit overzealous initially and worked up to 24 grams vitamin C and had severe abdominal pain with intestinal issues. she had such distress that she ended up in emergency. The good news was her platelets went down 85,000 within a very short period of time. She waited 3 weeks to start again and went very slowly but between the gas from the bicarb and Vitamin C intestinal distress she was able to get to 30 grams but not maintain as it caused such abdominal distress. After much research she decided to try the liposomol. She is taking 16 (500mg) pills which equals 8grams, but according to what ive read it's potency is 5 times that of the powder. So I consider that to be 40grams . Her Daily nerve pain from post shingles that she had 4 years ago has been worse also. Platelets were 706,000 Nov 30, gone up to 726,000. For those taking the liposomol is she taking the right doseage? Any suggestions would be so appreciated. She is getting discouraged. Thank you very much for any recommendations or suggestions. Grateful for this site! Carla

Hi, Carla,

I don't know about liposomal pills. I used to buy lipospheric sachets from Ireland which were rather expensive, until I began making my own liposomal mixture. What 'make' are they? I read too that liposomal C is 80% absorbable as opposed to 16% of the powder alone. I doubt this is a fixed figure it probably depends on other factors too! However, your sister would seem to taking a goodly amount. Incidentally, I take sodium ascorbate rather than ascorbic acid which is more acidic.

Could there be other factors involved? Sometimes there is a setback in healing. Do you have any idea of the original cause? Does she live near a power station or mobile phone tower? Does she work amongst a lot of electrical equipment?

Roger

RE: Myelofibrosis

by AllGoodWays on Sat Jan 13, 2018 08:45 AM

Quote | Reply

On Jan 11, 2018 1:25 PM dalt1 wrote:

On Jan 10, 2018 4:15 PM AllGoodWays wrote:

On Jan 06, 2018 1:34 AM dalt1 wrote:

On Jan 05, 2018 11:49 PM Terry77 wrote:

Hello ebyer,

I don't understand it when you say, "I have a hard time with the liquid selenium because even the smell of it makes me nauseous."

There's no smell or taste. Using the high concentration I have, I put 5 drops in a small glass of water and I wouldn't even know anything was in the water if somebody handed me the glass. 

And if the protocol is working well, then why would you stop it? And why are you adding raw garlic to anything? Who said to do that? Why not save the garlic for your evening dinner of shrimp scampi? 

Terry

Raw garlic is rich in B17 which is an effective cancer cure. However, B17 doesn't have any effect with MF or PV. Sometimes if one builds up with selenium too fast, they do get an aversion to the product even though it really doesn't have any smell or taste. 

When I first used selenium, I used 5ml per day from day one and it did cause nausea for at least one week untll my body became used to it. It did take me two years to mentally overcome my aversion to selenium. I persevered as I knew it was working.

Dalt

Hi, Richard,

Glad to see you are still keeping in here. I have kept my selenium in filtered water but out of the fridge for quite a long time. It was suggested that the smell that put me off was probably due to bacteria in the water. Do you suppose that is so? I still have some left because I haven't got a water tester yet. 

I recall you said it didn't need to be kept in a refrigerator but now I rather suppose you meant the selenium rather than the mixture in water!

Regards,

Roger

Hi Roger,

i am still here. Lately I have been away a lot with athletics and also visiting my older children who are working 1500 kilometres away (900 miles).

I still use selenium daily and never refrigerate it. If I start getting a smell, I replace the bottle.

Selenium is anti viral and anti Baterial so the chance of bacteria surviving in your selenium is nil.

My older son who is a lawyer has just moved to the UK for several years. I may visit next year and maybe, time permitting, we can meet up.

Dalt

Hi, Richard,

Thanks for that info regarding the selenium. I will try this.

Meanwhile, it would be good to see you. Whereabouts in the UK does your son live? My nephew is a lawyer in Milton Keynes. Another nephew is a detective inspector in the Leicester police. I tried to encourage him in music. Ah well!

Roger

RE: Myelofibrosis

by Carla3 on Sun Jan 14, 2018 02:58 PM

Quote | Reply
Thank you Roger for your response. We are not sure what triggered the situation. She does have the Jak 2 gene. She has worked in very stressful positions and around electronic equipment such as photo copy machines and large screen computers for years. If anyone else is taking liposomol pills any feedback would be appreciated. Again thank you Roger for your support! Carla

RE: Myelofibrosis

by AllGoodWays on Sun Jan 14, 2018 03:11 PM

Quote | Reply

On Jan 14, 2018 2:58 PM Carla3 wrote:

Thank you Roger for your response. We are not sure what triggered the situation. She does have the Jak 2 gene. She has worked in very stressful positions and around electronic equipment such as photo copy machines and large screen computers for years. If anyone else is taking liposomol pills any feedback would be appreciated. Again thank you Roger for your support! Carla

Hi, Carla,

One always has to take into account the original cause may be acting on one again. You say she did work amongst electrical equipment for years. Does she still? I wear a pendant:

https://www.amazon.co.uk/s/?ie=UTF8&keywords=emf+protection&tag=googhydr-21&index=aps&hvadid=196713666413&hvpos=1t3&hvnetw=g&hvrand=5928992313239037411&hvpone=&hvptwo=&hvqmt=b&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9046212&hvtargid=kwd-488655877592&ref=pd_sl_2yvogu2bcg_b_p28

Best wishes,

Roger

RE: Myelofibrosis

by kelso on Sun Jan 14, 2018 10:24 PM

Quote | Reply

Carla,

          Like your sister, I too am Jak 2 positive. Have been on the lypo vitamin C for for a little over 2 years. Have mf,not et. 

Carla,

          Like your sister, I too have the Jak2 mutation. I have MF though,not Et.  Been using lypo vitamin C (3 packets per day)  and so far, so good. Spleen and bloods good. Only knock is that is ridiculously priced. Most on this board make their own. I also had trouble getting over 35 grams of the powdered C.           Jon



RE: Myelofibrosis

by jeff3 on Sun Jan 14, 2018 11:16 PM

Quote | Reply

Carla, my wife has been using for the past two years the  Mercola liposomal capsules for those times when using the commercial Aurora liposomal C she is using is inconvenient. I have not seen a report showing the vitamin C blood level with the Mercola product. I would encourage your sister to try a commercialy prepared liposomal product and gradually replace the capsules with it but, like my wife, reserve them. She is currently using 15ml four times a day. Is your sister on any prescriptions for her diagnosis?

   

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