Turmeric

[Meeileem]

Does turmeric really lower platelets in ET patients?

[Mich10]

Hi I haven’t heard this before, so will follow with great interest! x

[Boss1]

Hi there,

I have PV/ET according to my haematologist. I have been taking 1 g of Curcumin, the most active part of Tumeric, daily for 6 years. My platletes remain about 550. Aspirin and ocassional venesection. I do have the itchiness with change of temperature and bathing but apart from that sympton free.

academic.oup.com/carcin/art...

library.ehaweb.org/eha/2018...

onlinelibrary.wiley.com/doi...

This is a completely natural substance which lower inflammation and helps other diseases too. No side effects.

[Hidden in reply to Boss1]

Hi Boss1, that is really interesting. Can I ask what your platelet count was when you were diagnosed, before you took tumeric?

Thanks, Debra

[Boss1 in reply to Hidden]

About the same but what is interesting is that my Haematocrit, although it does creep up, really surprises my consultant that the process is so slow. As there is no control experiment eg another 'me' without the curcumin...it is hard to 'prove' the same with so many natural therapies, but I'm sticking to my guns on this one.

bbc.co.uk/programmes/articl...

[huisiebydiesee in reply to Boss1]

Hi Boss1

Thank you for the interesting research articles. I am MPF Jak2+ but symptom free. Instead of ‘watching and waiting’ I’ve been on my own journey, helped by an Integrative/Functional medical practitioner. Apart from mega doses of liposomal vitamin c and max dose of selenium, I also take 4 gm of curcumin per day (recommended by a Functional Oncologist. Diet also strictly anti-inflammatory - with emphasis on vegetables and fruit and supplements to support, according to levels needed as shown in blood tests. Complete count Blood tests due early in October so will let this forum know the results either way. But fingers crossed! 😊

[Kdavie12 in reply to huisiebydiesee]

Please can you recommend a functional oncologist in the U.K., also how much does it cost? Thank you very much.

[Boss1 in reply to huisiebydiesee]

Good luck with your results. Where are you in the world? I have a sister who is a medical herbalist hear in the uk and her knowledge on diet and health is so much better then any doctor I have met. I feel in the UK there is so little training for doctors and nurses on diet. It is see as just an add on which is quite absurd! I put it down to her that my counts are so low.

[huisiebydiesee in reply to Boss1]

I’m in South Africa and trust our Functional/Integrative medical practitioners quite a lot. Can’t believe that 2 haematologists consulted had nothing more to say than ‘wait for the symptoms’. Of course, my attempts to address the myelofibrosis might come to nothing but at least I feel a whole lot better taking this active role in fighting for my own health. And I’ve lost weight which feels great!

[Boss1 in reply to huisiebydiesee]

That is exactly it! It is so good for us to be able to take an active role no matter what our condition. I changed haemotologists at the beginning as my first one was like a brick wall as far as any communication on bettering my health in general etc. If I'd stuck with him I would have been on hydroxy for the last eight years without needing it. I still don't need it for now.

[h2ogal in reply to Boss1]

Thank you so much for the links. My doctor told me not take turmeric but I think I will start taking it again as I think I felt better with it.

[POOGY]

My husband (who doesn't like technology) took himself off Hydroxy & started a more natural route after speaking with a naturopath doctor. His platelet count was 660 at worse but now remains around 400-470. The consultant was quietly amazed that we'd got things under control WITHOUT his drugs!!! These consultants have only studied drug use so don't know of anything else. They are clever people & Yes, we do need them. There are many herbs etc which can help the body & as others have said here, it works. Drugs are SO toxic that eventually, you'll need another one to treat the side effects & so it goes on. Please do your research & maybe visit a Naturopathic doctor who will treat the WHOLE body.

[Hidden in reply to POOGY]

I agree about drugs, my mother was on methotrexate for her arthritis but in taking this drug for many years helped her arthritis but weakened and damaged her heart. Methotrexate is on a par with hydroxyurea. I am impressed with your drop in your platelets. 400 is classed within the normal range. I do take vit C daily. I am only on aspirin, and are very reluctant to take HU. Platelets 700.

[Skyehope in reply to POOGY]

Poogy - what natural route did your husband take please? Very intetested.

[POOGY in reply to Skyehope]

Skyehope - My husband's platelet count was found, initially & quite by chance, to be 670. After being on Hydroxycarbamide for 18 months & the count always around 380-420 approx. He decided to stop taking the drug & see what his body was doing naturally. This is when he went to the naturopath who treated his whole body. He took curcumin, garlic, Bacopa complex, fish oil, Vit D, B vitamins etc. Etc. Please remember that we are individuals so each treatment for each person will be different. Basically, you'll be trying to balance the body up, because if one thing is wrong, that will effect something else. The naturopath always asked for the latest blood test result because this tells us everything & she always explains things. We are in the UK . My husband is now on 4 monthly checkups. When he saw the consultant he thought my husband was still on the mess, taking 1 each day & 2 at the weekends. He was so surprised to find my husband had stopped taking them! However although he didn't agree with stopping, he knew that's the way we going to go for the time being. That was 1 year ago & things have remained steady, so amazing stuff so far. Sometimes you have to help yourself with your health. I hope this helps a bit & it's always nice to chat to someone else. God bless you

[Skyehope in reply to POOGY]

Thank you Poogy. I have PV but my platelets are higher just now so was curious as to what might take them down. I always run any supplements past my lovely haem nurse first just to be sure. I hope things continue well for your husband x

[Lifam]

I am very much for natural herbs too, unfortunately as much as I dislike the extremely toxic Hu or other same purpose drugs I still have to be on it, having ET our bone marrow over produce platelets and will continue doing so, we can't stop it as there is where all our different blood cells come from, and because of that, we can only use something that can kill some of the excess platelets for us. I am a big believer of tumeric Curcumin, I believe it can work like blood thinner, I even intend to ask my Haem if I can use that to replace my blood thinner but I doubt if tumeric can replace HU, I wish it could, I may be wrong.

[Boss1 in reply to Lifam]

The thing is, they are 'not allowed' under their guidelines. I do understand why because they treat all patients the same and have their protocols. Naturopaths etc look at the individual patient in all cases and have much better knowledge on diet even though in the UK they are so often seen as 'quacks' which is absurd. Modern medicine came from the herbalists originally, look at Aspirin. Herbalists believe in using the whole or greater part of the plant. My sister, who treats me is very careful with contraindications so needs to know what normal drugs I am on for anything, when I do take them. I wouldn't take Curcumin in high doses without this back up. My Haemotologist is a bit amazed with my results. However, I will take Hydroxy or Interferon etc if I have to as it is a life saver for people with these diseases.

[Pte82 in reply to Lifam]

Look into red palm tocotrienol to control platelets. Also research how quercetin complements red palm tocotrienol. Hu lowers magnesium. Search on krispin magnesium for more info. Magnesium also prevents platelets from sticking together. Boron increases magnesium absorption. Put nothing boring about boron in your search window. Hu causes ulcers. Vitamin C is critical for collagen to strengthen skin and blood vessels. It also helps with night sweats and itching. Liposomal C lasts longer than non liposomal.

[Lifam in reply to Pte82]

Thank you. Will look into it since my stomach hasn't been feeling that good lately. But my haematologist appointment not until July.

[Pte82 in reply to Lifam]

Lifam, always discuss supplements with your haematologist before using them. Use the time until your next appointment as an opportunity to become more knowledgeable about your diagnosis. Do a Hydroxycarbamide vs JAK2 inhibitors search to compare these treatments. Then investigate "JAK2 signaling pathway" and see how quercetin, astaxanthin, selenium, vitamin C and red palm tocotrienol each affect the pathway. Then research each individually to find their benefits. Also search on "senescent cells" MPN to gain insights of how they impact your health. Also see what effect quercetin and red palm tocotrienols have on senescent cells. Finally, find products you use that contain or emit benzene or toluene such as paraffin candles. Search on "benzene MPN" to learn more about the association. Take notes and ask about what you've learned with your haematologist.

[Lifam in reply to Pte82]

Thank you so much. I'll do that.

[Lifam]

Yes, I totally understand that even we can take Curcumin (that to my understanding is helping blood thinning?)we still need Hydrea etc