How I've Been Handling PV

[honor2012]

I highly respect this forum and the sharing of experiences. I would like to share my experiences. I have had Polycythemia Vera for over 15 years. I am 79 years old. I have taken HU a few times when my platelets rose to 1,500,000.I am a firm believer that food is medicine and do not take medication unless absolutely necessary. The only negative effects from my Polycythemia is exhaustion. My platelets are now 1,200,000 and my hematologist monitors my CBC every two weeks. He has me do Phlebotomies whenever my hematocrites reach 41. He said if "Any new headaches or bleeding, or vision changes, or chest pain, or shortness of breath, please let us know immediately." He will then start HU.

First thing in the morning I take a “Dragon slayer” combination of fresh chopped garlic, fresh chopped ginger , lemon juice, cayenne pepper, and honey. My whole family does this and we have not had a cold or flu for the past 15 years.

My diet includes organic vegetables, fruits, apple and an avocado a day , banana , salads , bone broth, 82% dark chocolate, honey, eggs, sauerkraut , garlic, onions, basil pesto, Ezekiel bread ,granola whole grain oats , low fat yogurt, low fat milk, pomegranate juice, cranberry juice, cherry juice, ginger juice, nuts, berries, a combination of( flax, chia, and hemp), fresh herbs, parmesan cheese, olive oil, coconut oil, and avocado oil.Glass of red wine and coffee.

Always check for sugar content . Sugar is poison for the body.

Supplements:

Neprinol AFD by Arthur Andrew 2 capsules twice a day

Ceylon Cinnamon by Nuts Flair 1200 mg two once a day

Resveratrol 1450 by Purely Beneficial two once a day

B- Complex by Nature Made one a day

Bromelain by NOW one a day

Vitamin D3 1000 iu by Sundown

Magnesium two a day

Omega Krill 5X by BioTrust two a day

Red Palm Tocotrienols 50 mg by NOW

Ginkgo Biloba 120 mg by Nature's Bounty one a day

Turmeric Curcumin w/ Bioperine

Bayer low dose safety coated 81 mg one a day

Grape Seed Extract 800mg by Carlyle two a day

Uricel by Rejuvica 1/4 tsp once a day

Cherry Force by Rejuvica 1/4 tsp once a day

CBD capsules 300 mg by Greenhouse once a day

Lectin Shield by Gundry MD two a day

Vitamin E

Mushroom Reishi powder mixed into my decaf coffee.

Pure Ginger Juice very important I mix it with Cranberry Juice, Pomegranate Juice, Cherry Juice, and Equal ( aspartame good for lowering platelets )

I also make sure to walk everyday,keep hydrated, do Yoga, and get on my vibrating machine Zazz . Please research this machine. Keeps circulation going.

Best to all,

Teresa Beltramo

[hunter5582]

It sounds like what you are doing is working for you. I would certainly agree that food is medicine. Your kitchen is a pharmacy. Your approach would go a long way in controlling inflammation, which is a key issue in managing MPNs. I hope you have a doc who is knowledgeable about the use of complimentary health approaches since many supplements can and do interact with the medication we take. Congratulations on finding an approach that works for you.

[honor2012 in reply to hunter5582]

Thank you for your response. You are correct that some supplements can interact with medications. It is very important that we check it all out Since I am not on medication I am not concerned however if I am put on HU my doctor will let me know which supplements to discontinue I have done a lot of research and many of the things I take help lower platelets etc MPN is fortunate to have you on board with your experience and caring Gratefully

[hunter5582 in reply to honor2012]

Thanks. I consult with an Integrative/Functional Medicine specialist specifically to get input into the interface between supplements and conventional Western medicines. When I asked about the contraindication for combining fish oil and aspirin, my PCP did not know the answer. He referred to to the specialist I now consult with. She has been a very valuable part of my care team. Identified nutritional deficiencies I was unaware of, exposure to high levels of mercury (too much tuna), and added several anti-inflammatory agents (L-Glutathione and SPM Active) to the Curcumin I was already taking. We just recently added Reishi and Astragalus to improve immune response, which is being suppressed by the Pegasys. It does seem to be helping.

All the best my fiend and wishing you good health.

[honor2012 in reply to hunter5582]

Thank you . You are the best source for information. I had high level of lead because I would help my parents paint rental homes. The following is what I did after some chelation. Heavy metal detox foods to eat :cilantro

garlic

wild blueberries

lemon water

spirulina

chlorella

barley grass juice powder

curry

green tea

tomatoes

probiotics

Gratefully, Teresa

[MPort]

You are an inspiration. And Hunter. You walk the talk. I am going to copy your food lists and try to incorporate them in my diet - some oods I do already plus walking - my earmy morning joy. Thank you for sharing. I too have PV 16 years and have been on Pegasys for about 13 years. Venesections were a great misery for me so when Pegasys finally took over I was so grateful. I keep HCT at 38 as if it creeps to 39 it shoots to 42. I have avoided this happening for some years and hope it will continue.thank you both again. Mairead

[Mostew]

Great to hear how well you are doing . Really helps me to not waiver in my approach which is keep an eye on symptoms and if I feel ok with good energy I’m happier than starting Hydroxy.

My consultant wanted me to take meds 2 years ago but now respects my wishes and is monitoring bloods regularly. Taking aspirin daily. Functional practitioner says it’s hard to get correct dose of any natural alternatives…

Keep up the good work

Xx

[Loubprv Volunteer]

Crikey Honor. You must be rattling!I have always been an advocate of we are what we eat. I avoid all processed food - including supplements and vitamins actually - alcohol, preservatives and additives.

Organic food where possible and I eat a lot of dairy produce full fat and yes I do eat sugar in puds and cake but not every day and in moderation.

I feel as fit as a fiddle.

I drink 2-3 litres of tap water every 24 hours and hike for at least 1.5 hours a day..

I have taken 1000 mgs of HU daily along with 75mgs aspirin and 75mgs levothyroxine for the last 12 years.

I have a venesection about 3 times a year.

My platelets vary between 270 and 470 - usually! At 1,200,000 your platelets sound very high? My specialist in Mpn’s at the Christie has a wobbly if mine go over 600 which they did once.

I think we all have to do what suits our particular lifestyle - perhaps without obsessing?

Quality of life is important to me and that includes eating out and socialising!

Just saying that in case anyone out there is worried as they chomp on a choccy digestive or 3.

I m 67 and was diagnosed in 2009.

Stay well . Love Louise

[Mostew in reply to Loubprv]

If we are trying to stay of conventional meds it’s a good idea to add supplements. (Wisely chosen)

I did think Honor is taking a lot but she has done research and is happy with what she is doing .

You are right Consultants are very keen to have us taking meds. As the havnt been trained in other way .

I would have been put on Hydroxy 2 years ago.

Glad you feel well with how you have chosen to respond to your MPN .

I Also avoid sugar , a little honey is nice

Warm wishes to you

C

[Loubprv Volunteer in reply to Mostew]

And to you Mostew. I actually studied dietetics and nutrition at uni about 90 years ago so I do know what I m talking about.

You know if I had poo pooed the meds 12 years ago I would most certainly have had a very serious and probably fatal stroke. My haematocrit on diagnosis was 74.

I have never smoked or taken the pill.

I m well aware that medics like to hand out the drugs but sometimes these drugs are life savers.

We have a friend who died from heart problems last year. He was a Christian scientist and of course believed wholeheartedly in self healing. Sadly it didn’t work for him.

Sometimes we need the drugs that “ big pharma” as they say in the US produce.

We would have been in dickies meadow ( and to some extent still are) without Covid vaccines, and without many many other vaccines and medicines come to that.

Food does not heal us, it can play a MASSIVE part in how well we stay.

I ve proved that too.

I think to say that it can replace vital medication is misleading and dangerous.

Do you live in the UK or the US?

Best wishes

Louise

[Mostew in reply to Loubprv]

Uk

[Mostew in reply to Loubprv]

Ps. Good quality Red wine is beneficial

As it contains Resvetarol . (A small !)glass

[Mostew]

Oh dear . I’m sorry for misunderstanding. I’m not against meds when needed, and will take Hydroxy when the time feels right .

While I am feeling better than I have in a long time , I’m happy to continue the route I’m taking . With an open mind that things change..

Warm wishes to you

Carolyn

Ps I had COVID vaccine s ….