Worth watching re inflammation

[Paul123456]

Interesting video regarding reducing symptom burden and possibly even slowing progression.

youtu.be/FzyoPAGTu-U(Not working as expected?)

And note the reference to N-acetylcysteine

[Stevesmum42]

Thank you Paul ,

just watched,..... very interesting presentation. I have been looking at starting the Mediterranean diet for a while , this will give me added impetus to change. I was thinking it would be interesting to see the statistics of Mpn patients who live in Italy Greece etc. re their longevity and quality of life , as opposed to their Northern European counter parts.

Thank you for all your helpful informative posts so appreciated.

Regards Sandy.

[Aneliv9]

Thank you, i was watching this trial and waited for results. I am from Greece, so i will enhance my Med. diet ,cause I wasn't so faithful to it. To much sugar and minor vegetables these past 6 years.. i will reverse it dramatically from now on.

As far as reference to N-acetylcysteine, why is it so worth mentioned??? I haven't heard about it..

[Paul123456 in reply to Aneliv9]

NAC is noted in one of the slides as improving symptom burden plus the same team are currently running a NAC trial so clearly think a potential benefit .

[Superwoman]

Thanks for that Paul, considering they mentioned IBD Which I have just been diagnosed with Colitis or Chrones and might have to go on steroids or have part of bowel removed, having ET is bad enough but now this it getting to me a bit, even though I more or less eat a really good balanced diet hoping that giving it a few tweaks might help.

So thanks for this

Jean

[Paul123456]

Sorry to hear about your IBD.

Are you trying probiotics? I think promoting good gut bacteria might be a possible solution to many problems. There appears to be ongoing research into this

Best Paul

[fee13 in reply to Paul123456]

Agree! Prebiotic & probiotics 😀

[Superwoman in reply to Paul123456]

Hi Paul, yes I take Symprove daily, this was recommend by a gastroenterologist earlier this year, the product also has the backing of Kings College Hospital London, being as it’s water based people that have a lactose intolerance or gluten problem can take, the down side it is rather expensive, but if you by two months you get the third month free, and I must admit it has helped me a lot.

Jean

[Sweetlucy in reply to Superwoman]

I had a look at the website. It is extremely expensive. Doesn't kafir or fermented veg work as well? Or even a bottle of pills

[Superwoman in reply to Sweetlucy]

I get my Symprove from Kent Nutrition Clinic, it’s quite a bit cheaper at £139.90 and you do still get the third month free. Yes you can use Kefir yogurts they also are not cheap about £1.30 a pot love these as well, used to get tablet form but had to take so many in a day to get the correct balance and again turned out just as expensive, so when recommend by the gastroenterologist, I thought I would give it a go, take first thing in the morning when I get up and ten minutes before a cup of tea. The plain has not got a very nice taste but the Mango and Passionfruit is very good.

As for fermented veg never been a lover of it especially sauerkraut, my mother used to make this she was always pickling vegetables she also used to make yogurt which used to taste like the Kefir ones we get today which was lovely but as for the veg too this day I do not like.

Jean

[Sweetlucy in reply to Superwoman]

Thanks for the information.

[tessa46]

Many thanks Paul, this is really interesting. I am luckily pretty symptom free, despite being diagnosed (ET JAK2) after a minor stroke, in 2015. I follow a mainly Mediterranean diet (including red wine!) and exercise regularly. The thing I don’t understand is that anti inflammatory diets restrict the nightshade family (includes tomatoes, potatoes & aubergines) but these do feature in a Mediterranean diet and I certainly eat them. So I’m confused about this - any ideas? Many thanks for all your useful inputs

[Paul123456 in reply to tessa46]

Tomatoes are a staple part of my diet! Contains lycopene which is highly anti inflammatory.

Agree re red wine and one slide indicates symptom relief!

My golden rules are minimise sugar, refined products, junk food etc.

I’m Med Diet but use coconut oil in addition to olive. Lots of whole grains, veg, fruit and fish. I add in plenty of herbs, especially oregano which was shown to be of benefit in one MPN food study. Ginger and green tea.

[Ebot in reply to Paul123456]

Yes, you’re right about tomatoes. There are some mixed messages about the ‘nightshade veg’. Though (on digging) the consensus seems to be that the idea they increase inflammation is a bit of a myth and that there is no evidence to suggest they do - quite the reverse. But that does suggest that there is confusion which could do with clarification.

[Sweetlucy in reply to Paul123456]

A tea spoon of organic hemp oil has the correct ratio of omega3 and omega6. I started to take it daily. It's expensive and tastes awful but so do my smoothies. Every thing goes in, apple orange blue berries spiralina chorella macca curcumin ginger kale beetroot cauliflower and other stuff I can't pronounce. With all this I should be entering the marathon. Should mention Beta Alanine which stops the itching

[Ebot in reply to tessa46]

That’s an interesting point about tomatoes etc (certainly tomatoes are a mainstay of Mediterranean diets) and maybe worth picking up on with the authors of this study.

[light in reply to Ebot]

Tomatos have vitamin K

[Lifam]

Thanks for sharing, I've saved that and will definitely watch it later

[Lifam]

I've been following the Mediterranean diet idea since I was diagnosed, and I have been doing well at this stage.

[hybiscus]

Thanks so much for sharing, very interesting 🙏

[beetle]

My health markers have all improved substantially since adopting Mediterranean diet. I must confess I eat a lot of tomatoes but have noticed when I really overdo it I tend to get UTI so I do try and be careful. It is so tempting when the greenhouse is full of lovely red fruits but I know that they are better for you cooked than raw. Homemade tomato soup has been a real plus this year. Thanks again, Paul, for bringing our attention to interesting articles

[Boss1]

Hi there,

Great stuff. My herbalist here in the uk has been advising me since diagnosis of PV (Jak2+) and I have been on a mediteranean diet ever since (not that strict). I have been taking many supplements which help lower inflammation. I take 1g of curcumin a day. My haematolgists seem a bit amazed at my low counts (platelets have been settling down to 488 in the last 8 weeks. It is really slowing down progression. This I am certain of. If only the natural doctors and conventional doctors could get together....what a great day that would be. The effects of low inflammation diet and particularly curcumin have been known about for years and years by herbalists and naturapaths, and they face so much ridicule from the medical profession and the media here in the UK. Still, it's all good! We all have some good news on the horizon it seems

[Sweetlucy]

Is this research still current? I'd love to participate? I've been vegan for over 30 years enjoying fruit and vegetables in huge amounts but still got MPN. Now only eating organic produce. God only knows where this comes from. My sister has severe seliac disease and must avoid gluten Also Thyroid problems. I wonder if it is all related

[Aneliv9 in reply to Sweetlucy]

The fact that your nutrition is so perfect, is a bit discouraging for me to be very faithful to Mediterranean diet! What mpn and how many years?

[Sweetlucy in reply to Aneliv9]

I was diagnosed about two years ago after a bmb. Was told I have ET and PV is that possible? My second cousin's little girl has a blood disorder although I am not sure what. I'm not in contact with them.

[hunter5582 in reply to Sweetlucy]

Sort of. Essential Thrombocythemia means you have thrombocytosis (too many platelets) but other blood cell lines are in the normal range. The thrombocytosis is primary - not a secondary result of another medical condition. Polycythemia Vera means that you have multiple blood cell lines (at least two) elevated. So you can have thrombocytosis and in addition erythrocytosis (too many red cells) and/or leukocytosis (too many white cells).

The MPNs are genetic disorders, but typically an acquired rather than a congenital mutation. The is a rare familial variant, but it is not common with MPNs. There is some research indicating that there may be a genetic predisposition for some - a haplotype that predisposes you to acquire the JAK2 617f mutation.

Hope that helps

[Paul123456 in reply to hunter5582]

Hi

I note your issues with HU, just wondering why you haven’t tried Pegasys?

Best

Paul

[hunter5582 in reply to Paul123456]

The MPN Specialist recommends phlebotomy-only based on my profile of symptoms. He does not favor "sanitizing" blood cell numbers in the absence of symptoms. In fact, he calls chemotherapy to chase a lab value "a fools errand." This doc does in fact favor peg-interferon when chemo is indicated based on the patient's needs. If I do ever need to resume chemo - I will be evaluating both peg-interferon and Jakafi. Not sure which would be better. Will have to wait and see.

[Sweetlucy in reply to Aneliv9]

Don't be discouraged. A vegan diet can be unhealthy if you live on chips, crisps and baked beans. I've lived on veggie burgers and veggie sausages which are processed foods. There are many factors in acquiring MPN. In my case perhaps years of inhaling paint fumes and other chemicals while renovating my house. I didn't even wear gloves. Years of heavy smoking and eating food contaminated with glysophate. A man in the US has been awarded millions of dollars after developing Non Hodgkin's Lymphoma from years of spraying glysophate (Round Up)On the golf course where he was employed. On the other hand years of using hair dye.

The cause must be found but big business would fight hammer and tong to prevent a ban on their product.

[mhos61 in reply to Sweetlucy]

It does make you wonder! Particularly when this video alludes to autoimmune conditions can precede an MPN.

[Sweetlucy in reply to mhos61]

I've got an underactive thyroid too an on medication for this. The latest NHS statement about diet recommends 8-9 different fruits and vegetables daily. Even I would struggle with this.

[mhos61]

Thanks for this Paul. I enjoyed it, watched it twice.

[Kimmyk]

I have telling my doctor that I feel that I have itching and what feels like being stuck with a pin due to inflammation caused by foods, allergens, anything that can bother me at the day or time. She just looks at me like I have two heads. I wish if doctors were more interested in what they're treating and see and research things like this.

[carlyjo]

Great video. Thanks for posting Paul 👍 Much appreciated Carolann 😊

[Hidden]

I found this talk extremely interesting and revealing. Not only for the information about the role of inflammation but also for some of the 'extras' it provided. 1) the possible connection with autoimmune disorders and prolonged inflammation 2) how there might be a familial link. Thank you for posting.