Anyone want to talk about Myelofibrosis?

Posted by wellness3070 @wellness3070, Jan 5, 2017

Anyone out there wishing to discuss above diagnosis?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

OK, link 1) Some of the key high-antioxidant foods to focus on include:

green leafy vegetables
cruciferous veggies (broccoli, cabbage, cauliflower, etc.)
berries
omega-3 foods like salmon and wild seafood
nuts and seeds (chia, flax, hemp, pumpkin, etc.)
unrefined oils like extra virgin olive oil and coconut oil
herbs and spices (ginger, turmeric, garlic, for example)

We have salmon every Sunday and white and tinned fish regularly. We always use coconut oil and olive oil (no others). Nuts and seeds are eaten every day including chia and flax, pumpkin and sunflower, hemp occasionally and always have a full drawer of organic veg.; berries I love!

I have no problem researching and understanding diet. I researched, over many years, a history of diet back to the Prosimion, 60 million years ago. I have given talks with music on the history of food and it would surprise me if any really thoroughly good diet has no historical background! There are variables for groups, of course, one is the different diets tolerated over ages in different peoples - ref William Wolcott and the Metabolic Typing Diet, essentially the basic difference between the hunter-gatherer diet of Africa (30-40& lean meat and 60-70% vegetarian), and the eastern European big game hunter (mostly meat with a little seasonal veg). There will naturally be a 'mixed type' too. Even the Innuit eat 24 different kinds of moss, apparently! This is why the 'single-minded' lobbies always battle over which is best. They have not heard of the history of variety (the only newcomer in the field being the Agrarian diet - not yet fully assimilated, it is said). Then, each individual is different too. It is both hugely complex and quite simple - the brain has no taste buds but, there again, we have three different kinds of these A) natural - (lost in the mists of our childhood, probably), B) Learned at table, C) corrupted by fancy! Overcoming the last two would be the simplicity of diet, but who said the simple is easy? The Weston Price Foundation determined that the maritime diet is the healthiest, the hunter-gatherer second and agrarian last!

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I will certainly read these, having heard a lot of good things about Glutathione. Meanwhile, I was looking at detox yesterday, specifically considering detoxing the spleen and I came across this video where she maintains that any detox must be carried out in a particular order and that the lymph system is last:

Judy Seeger
https://youtu.be/aBlbbeG1l5Q

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@stimme

Hello, I took serrapeptase for a while. I really had no idea if it was working and, as it was rather expensive I stopped in favour of several other supplements (which, combined appear to have contained my myelofibrosis without medication since diagnosis in early 2011). I recently added broccoli sprouts powder and quercetin to my liposomal vitamin C mixture which I take daily having been told they might reduce the fibrin. However, I had a sound scan yesterday and my spleen is bigger even though my blood counts are good and my consultant recently said I was 'unusually' stable. I am looking now at Serra Enzyme® 250,000IU Maximum Strength Serrapeptase. It is £50 for 80 ... gulp! I do not have savings of any quantity but have never stinted on experimenting with otherwise harmless options so would count myself reckless not to try it! I say throw caution to the winds and dare to spend where the results 'may' be positive!!

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stimme, before investing in the enzyme look further into tuning up the lymph system since the spleen is part of the lymphatic system you may experience a reduction in spleen size by approaching it in it's entirety. There are a lot of info on doing just that such as these two by Dr. Axe. Also research what castor oil packs do for the lymph system and for glutathione and what glutathione does for the body. The last link is about increasing glutathione.
https://draxe.com/health/lymphatic-system/
https://draxe.com/health/enlarged-spleen/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6770193/

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@heartspace

My wife was diagnosed with MF 4 months ago due to MPL mutation. We just heard antiproliferative, proteolytic enzymes like those in VITALZYM (serrapeptase)(World Nutrition, Inc.) may be helpful in ameliorating Myelofibrosis. Does anyone have any info/insight about this? Steve

Jump to this post

Hello, I took serrapeptase for a while. I really had no idea if it was working and, as it was rather expensive I stopped in favour of several other supplements (which, combined appear to have contained my myelofibrosis without medication since diagnosis in early 2011). I recently added broccoli sprouts powder and quercetin to my liposomal vitamin C mixture which I take daily having been told they might reduce the fibrin. However, I had a sound scan yesterday and my spleen is bigger even though my blood counts are good and my consultant recently said I was 'unusually' stable. I am looking now at Serra Enzyme® 250,000IU Maximum Strength Serrapeptase. It is £50 for 80 ... gulp! I do not have savings of any quantity but have never stinted on experimenting with otherwise harmless options so would count myself reckless not to try it! I say throw caution to the winds and dare to spend where the results 'may' be positive!!

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@stimme

Interesting and very thorough article. Thank you. I just found this article about compatible vitamins and minerals. I cannot vouch for the authority. Perhaps it requires more research!
https://www.amandean.com/blogs/news/the-abcs-of-mixing-supplements-and-what-vitamin-mineral-interactions-you-should-avoid
Everyone's favorite master antioxidant has very few negative interactions, which is yet another reason why its so easy to incorporate into your daily diet! It is so fantastic and goes well with almost everything. However, glutathione contains a substantial amount of sulphur, so you should not take glutathione along with other sulphur-containing supplements, unless you have received explicit medical approval to do so.

The sulphur caution that accompanies both both Beef Gelatin and Liposomal Glutathione goes not only for sulphur directly but any supplement that contains sulphur, including these popular supplements: garlic, glutathione, glucosamine, N-acetylcysteine (NAC), alpha-lipoic acid (ALA), chondroitin, and Methylsulfonylmethane (MSM). Since NAC and ALA are fairly popular supplements -- be careful and do your research before taking them in the same stack, at the same time as Glutathione.

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Your article is good seasoning in the community pot.

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@onamission

It is interesting. This article shows why liposomal Glutathione is the way to go because otherwise it's destroyed in the stomach
https://www.practicalpainmanagement.com/pain/neuropathic/relief-symptoms-associated-peripheral-neuropathy

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Interesting and very thorough article. Thank you. I just found this article about compatible vitamins and minerals. I cannot vouch for the authority. Perhaps it requires more research!
https://www.amandean.com/blogs/news/the-abcs-of-mixing-supplements-and-what-vitamin-mineral-interactions-you-should-avoid
Everyone's favorite master antioxidant has very few negative interactions, which is yet another reason why its so easy to incorporate into your daily diet! It is so fantastic and goes well with almost everything. However, glutathione contains a substantial amount of sulphur, so you should not take glutathione along with other sulphur-containing supplements, unless you have received explicit medical approval to do so.

The sulphur caution that accompanies both both Beef Gelatin and Liposomal Glutathione goes not only for sulphur directly but any supplement that contains sulphur, including these popular supplements: garlic, glutathione, glucosamine, N-acetylcysteine (NAC), alpha-lipoic acid (ALA), chondroitin, and Methylsulfonylmethane (MSM). Since NAC and ALA are fairly popular supplements -- be careful and do your research before taking them in the same stack, at the same time as Glutathione.

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@stimme

NAC sounds interesting. My pains are not from myelofibrosis. I don't have bone pain these days. The pains are from trapped nerves in thoracic and lumber vertebrae. I have been a professional orchestral violinist and all those tensions are probably coming home to roost. I am about to go back to my osteopath.

Jump to this post

It is interesting. This article shows why liposomal Glutathione is the way to go because otherwise it's destroyed in the stomach
https://www.practicalpainmanagement.com/pain/neuropathic/relief-symptoms-associated-peripheral-neuropathy

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NAC sounds interesting. My pains are not from myelofibrosis. I don't have bone pain these days. The pains are from trapped nerves in thoracic and lumber vertebrae. I have been a professional orchestral violinist and all those tensions are probably coming home to roost. I am about to go back to my osteopath.

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Sounds like your in good hands. Yes, the liposomal Glutathione form is out front. It's recommended to take it, or the non-liposomal form, 30 to 45 minutes before other supplements or food. I encourage checking out NAC as it offers enhancement for myelofibrosis pain relief.amoung it's repertoire.

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I have also heard a lot about Glutathione. It apparently is better absorbed in a liposomal mixture. I have been taking Anadin Extra for pain for some time and was concerned about the reported possible effects on the liver. My Medical Herbalist, to support the liver, then added Horsetail to the tincture he gives me of nettle root, Reishi mushroom and artichoke. Last week my blood test showed no problems with liver or kidneys! I still might update my research on Glutathione.

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