Myelofibrosis*

Posted by wellness3070 @wellness3070, Jan 5, 2017

Anyone out there wishing to discuss above diagnosis?

@dot65

Why am I losing so much weight?

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Welcome to Connect, @dot65.
I moved your message to this discussion so you could meet others who are talking about myelofibrosis, like @heartspace @wellness3070 @rcand10s @gael and @bjsdancer.

Dot, you asked about weight loss. Some people do experience unintended weight loss. How is your appetite? Have you spoken with a dietitian?

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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

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Hi Steve,
I couldn’t find any evidence-based mentions of serrapeptase being used to help treat myelofibrosis. I found no mention of it in the National Center for Complementary and Integrative Health (NCCIH) database. A few members like @steve1948 @hishamhussain and @marzz have mentioned using it for lung conditions with varying success (or lack thereof).

Have you spoken to your wife’s doctor about it?

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hEHello out there. My name is Nancy Bush (shortshot80,net) I arrived on the Mayo Clinic site because I have 2 types of Lung Cancer. My son who will be 62 in August has been diagnosed with Jak 2 a little over a year ago. He has since been unable to work in his profession ( Plaster Contractor. Some one told him that perhaps this could have been contracted by “radiation”. What causes this disease? Is there anything he can do besides take this “(Hydroxyurea caplets? His body hurts all the time and his doctor tells him that he isn’t supposed to have any pain… But he does and cannot get any pain pills. At this time he doesn’t have any money/insurance to go to another doctor. Also just some information ## son’s second wife has lung cancer mastized to her lymph nodes. and his first wife died of “melanomah”. Any answers would be appreciated.. Nancy

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Hello, are you still discussing myelofibrosis? I was diagnosed in 2011. Presumably, it was already in existence before then because it was only discovered through an over 60s health check! I have taken no medication for this but my consultant Haematologist said recently, "Whatever you are doing keep doing it. It is working!" He said this in front of a medical student when I mentioned that we didn't agree on treatments so he was obviously serious. I have been making my own mixture of liposomal vitamin C which I have been taking with curcumin, medicinal mushrooms and various other supplements – often chosen after discussion with others on Cancer Compass and occasionally changed. Selenium is highly recommended but someone informed that that high doses of vitamin C interfered with it so I take that with water. I have also been interested in Serrapeptase an enzyme which apparently 'eats up' dead tissue (AKA fibrin) – my consultant and my Medical Herbalist both checked up on this and said it looks good! This has to be taken two hours after eating and one hour before. However, the dosage is not clear. I have read one can take as much as one wants but one needs to build up to it. On the other hand, it isn't cheap so I was hoping someone had more precise knowledge of this!

I quote:

Because of its protein chopping action, serrapeptase helps thin out the fluids formed from injury, thus facilitating the drainage of these fluids. This speeds tissue repair and relieves pressure that causes pain. Serrapeptase also inhibits the release of bradykinin, a substance that induces pain.

Serrapeptase is fibrinolytic, which means it digests excessive amounts of the protein known as fibrin. Fibrin causes the blood to clot or become sticky. The more fibrin, the greater the risk of heart attack or poor circulation. If one is able to keep fibrin levels under control, one prevents excessive stickiness of the blood flow, hence heart attacks and strokes. This is one of the mechanisms by which one can dissolve atherosclerotic plaque with serrapeptase.

Serrapeptase only dissolves non-living tissue, leaving living tissue alone. Blood clots, cysts and arterial plaque are all gradually dissolved. Over 50 clinical trials from Europe and Asia attest to the ability of serrapeptase to successfully treat conditions ranging from sprains, torn ligaments, post-operative swelling (edema), fibrocystic breast disease, deep vein thrombosis (DVT), carpal tunnel syndrome, ear, nose and throat infections and atherosclerosis. serrapeptase literally digests inflammatory tissue.

Serrapeptase was popularized by research done by the late and legendary Dr. Hans Nieper, an internist from Hanover, Germany, who used this powerful enzyme to treat virtually all degenerative diseases, including cancer, autoimmune diseases, crippling arthritis, atherosclerotic heart disease and dozens of other disorders.

Is Serrapeptase safe? On a scale of one to 1,000 with one being harmless and 1,000 being highly toxic causing death, we have aspirin, ibuprofen and corticosteroids at close to 1,000 while serrapeptase is closer to one. Yes, serrapeptase can cause mild gastric irritation in some elderly people but that’s really quite rare. The one caution about serrapeptase is that long-term safety studies have not been done. On the other hand, the supplement has been in wide scale use for over 30 years and nothing deleterious has been reported on a consistent basis. As with most nutritional supplements that are GRAS (generally regarded as safe), any adverse reactions that occur are usually in the mind of the individual using the supplement.

Dr. Zoltan P. Rona practises complementary medicine in Toronto and is the medical editor of The Encyclopedia of Natural Healing. He has also published several Canadian best-selling books, including Return to The Joy of Health.

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Welcome to Connect, @stimme. I’m sincerely happy to hear about the benefits of your current treatment protocol, but there are still no well-done, controlled clinical trials that have shown a substantial effect of vitamin C on cancer. Some studies do suggest a mild decrease in side effects of certain cancer treatments when standard therapy is combined with high-dose IV vitamin C.

Another factor to consider is that if you take a closer look at much of the research, you will see that these studies don’t use food or supplements as a source of vitamin C. Instead, researchers inject patients with very high doses of vitamin C – much higher than you could get from food or supplements directly – to see minimal benefits. By injecting a drug or supplement, it becomes active more reliable and quickly. https://www.cancer.gov/about-cancer/treatment/cam/patient/vitamin-c-pdq

Mayo Clinic advises that people consult with their current care provider before making any changes to their existing medication or treatment plan. And, when considering complementary or alternative treatments, I feel it’s best to be open-minded yet skeptical – learn about the potential benefits and risks. Here is an article from Mayo Clinic, that might interest you about whether vitamin C can help in any form of cancer:
https://www.mayoclinic.org/diseases-conditions/cancer/expert-answers/alternative-cancer-treatment/faq-20057968
Serrapeptase is an enzyme isolated from bacteria found in silkworms, and you are correct about it being used for many years, especially in Japan and Europe for reducing inflammation and pain due to surgery, trauma. Again, it is a dietary supplement, and clinical research about its efficacy is very limited. is
There’s also a lack of data on the tolerability and long-term safety of serrapeptase https://www.healthline.com/nutrition/serrapeptase#side-effects

A few members like @steve1948 @hishamhussain @richman54660 @farmerj @spicegirl have mentioned using it for other conditions with varying success (or lack thereof).

@stimme, I think most of us would do without meds if given the option, but sometimes they are necessary. May I ask if you would share your concerns?

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@kanaazpereira

Welcome to Connect, @stimme. I’m sincerely happy to hear about the benefits of your current treatment protocol, but there are still no well-done, controlled clinical trials that have shown a substantial effect of vitamin C on cancer. Some studies do suggest a mild decrease in side effects of certain cancer treatments when standard therapy is combined with high-dose IV vitamin C.

Another factor to consider is that if you take a closer look at much of the research, you will see that these studies don’t use food or supplements as a source of vitamin C. Instead, researchers inject patients with very high doses of vitamin C – much higher than you could get from food or supplements directly – to see minimal benefits. By injecting a drug or supplement, it becomes active more reliable and quickly. https://www.cancer.gov/about-cancer/treatment/cam/patient/vitamin-c-pdq

Mayo Clinic advises that people consult with their current care provider before making any changes to their existing medication or treatment plan. And, when considering complementary or alternative treatments, I feel it’s best to be open-minded yet skeptical – learn about the potential benefits and risks. Here is an article from Mayo Clinic, that might interest you about whether vitamin C can help in any form of cancer:
https://www.mayoclinic.org/diseases-conditions/cancer/expert-answers/alternative-cancer-treatment/faq-20057968
Serrapeptase is an enzyme isolated from bacteria found in silkworms, and you are correct about it being used for many years, especially in Japan and Europe for reducing inflammation and pain due to surgery, trauma. Again, it is a dietary supplement, and clinical research about its efficacy is very limited. is
There’s also a lack of data on the tolerability and long-term safety of serrapeptase https://www.healthline.com/nutrition/serrapeptase#side-effects

A few members like @steve1948 @hishamhussain @richman54660 @farmerj @spicegirl have mentioned using it for other conditions with varying success (or lack thereof).

@stimme, I think most of us would do without meds if given the option, but sometimes they are necessary. May I ask if you would share your concerns?

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Hello, Kanaaz, I don't think you can have heard of the liposomal mixture. This is a process whereby the vitamin C powder (I use sodium ascorbate) is blended with lecithin (I use organic sunflower lecithin as soya is only good if fermented). One uses a 'jewellery cleaner to vibrate the mixture until it is properly chelated. A doctor told me online that 22 minutes is a good time for this. There are many studies which say liposomal (80% absorbable) is at least as good as IV. In fact, there is a video online from a news station of a farmer in New Zealand who was in hospital with swine flu fever and leukaemia. His lungs were full and his life support system was due to be switched off at the end of the week until his sons insisted he had two injections of vitamin c (100 grams) his lungs began to clear and I am informed they continued to give him liposomal vitamin C. There is then a film of him flying his helicopter – cured! Linus Paulin did much to confirm the efficacy of high dose vitamin C against cancer.
As far as such 'research' is concerned, it is not in the interest of highly financed organisations (i.e. the pharmaceutical companies) to sponsor expensive research on substances which will yield them no profit! Besides which, for all the claims on double-blind placebo tests, there are none done on mixtures of drugs yet these are regularly prescribed without thought. When I was the secretary of the local branch of Epilepsy Action, a young lady phoned me to say she had had a heart operation for an arrhythmic heartbeat. I have a book which tells of medication side effects and what to do about it. I checked on the cocktail of drugs she was taking and sure enough, the side effect of one was this very condition. Another lady rang me. I went through the side effects of all the tablets she was taking for her epilepsy and said there were too many. She raised a storm about this at Addenbrookes Hospital until they reduced the drugs from, I think, eight, to just two. Her seizures went from three a day to just three a month. She was very grateful to me! Incidentally, my own epilepsy, which disappeared entirely in 1984 (after taking no medications for many years) was caused by pneumonia from having my tonsils out at the age of five! I learned scepticism (from the Greek scepire, to observe)_of the system at an early age!
One can, of course, always wait until someone in the system agrees but as these supplements are quite harmless I would have thought it worth taking a chance on which is what I am doing with apparent success!

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@kanaazpereira

Hi @wellness3070,

Unfortunately, research shows that muscle weakness can be one of the side effects; however, here’s some more information form Mayo Clinic, about treatment of anemia in myelofibrosisi: http://mayocl.in/2iPMnSZ

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Hi, Kanaaz, Thank you for this. That side effect – muscle weakness – had slipped past my radar. I have sudden muscle weaknesses in my arms and legs. I also have spinal stenosis which could also cause that (and may itself also be a side-effect, of course – fibrin in the spinal column). The problem for me is that I am a violinist. I can still teach but I was doing popular recitals. Now I dare not chance this in case I drop my bow. This has almost happened even when teaching!

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@stimme

Hi, Kanaaz, Thank you for this. That side effect – muscle weakness – had slipped past my radar. I have sudden muscle weaknesses in my arms and legs. I also have spinal stenosis which could also cause that (and may itself also be a side-effect, of course – fibrin in the spinal column). The problem for me is that I am a violinist. I can still teach but I was doing popular recitals. Now I dare not chance this in case I drop my bow. This has almost happened even when teaching!

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Good morning, @stimme . So I understand you have a chronic disease and you’re a violinist. How do the two things affect each other? I also have a chronic disease and I find it has affected everything I do. You said that you don’t give recitals anymore because of weakness in your hands. That must have been hard to accept. Have you found anything you can do for the weakness?

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Hi, Becky, I was having acupuncture plus some pretty vigorous massage. I also took osteopathy. He believes it is two spots in my spine where the vertibrae are trapping a nerve. He helps. I will tell more next week.

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@stimme

Hi, Becky, I was having acupuncture plus some pretty vigorous massage. I also took osteopathy. He believes it is two spots in my spine where the vertibrae are trapping a nerve. He helps. I will tell more next week.

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stimme, thank you for your contribution and I hope the acupuncture has helped. I came across this information and wondered if you or anyone here knows if this has developed as a myelofibrosis treatment:
https://nlm.life/25466670

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Dear Onamission, thank you. This looks rather exciting. As it is, I am my normal weight still. I do take pure curcumin in my liposomal vitamin C (which I make myself and which a number of intelligent researchers are saying very high dose vitamin C (IV or liposomal) will also counteract coronavirus!) plus medicinal mushroom capsules, Benfotiamine, Saw Palmetto, a D3/K2/Mg capsule, Mg & zinc tablets and Patrick Holford's Optimum Nutrition Formula. I was taking Serrapeptase but cannot currently afford this, good as it is recconed to be for eaing up fibrin. I also take selenium.
I am also building up the courage (and planning) to start the Breuss 42-day-fast with my doctor checking on my health!!

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@stimme

Dear Onamission, thank you. This looks rather exciting. As it is, I am my normal weight still. I do take pure curcumin in my liposomal vitamin C (which I make myself and which a number of intelligent researchers are saying very high dose vitamin C (IV or liposomal) will also counteract coronavirus!) plus medicinal mushroom capsules, Benfotiamine, Saw Palmetto, a D3/K2/Mg capsule, Mg & zinc tablets and Patrick Holford's Optimum Nutrition Formula. I was taking Serrapeptase but cannot currently afford this, good as it is recconed to be for eaing up fibrin. I also take selenium.
I am also building up the courage (and planning) to start the Breuss 42-day-fast with my doctor checking on my health!!

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… oh, and for muscle pain I use a CBD, MSM, Arnica, Turmeric, Rosemary, Eucalyptus etc cream called PURAGANIC – this is amazing. Every suffering person I have let try this agrees! I haven't had bone pain for a while, I have just realised! Perhaps I am doing something right? For nerve pain (spinal stenosis) I am afraid I take Ibuprofen (after food, of course) as this seems to be the only antidote to this!

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