Ketogenic diet and PV: Has anyone here been told... - MPN Voice

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Ketogenic diet and PV

hybiscus profile image
23 Replies

Has anyone here been told ketogenic diet could be a good option for Pv, Et or MF?

A friend with cancer went to MacMillan Cancer which referred him to Maggies and he learned about the positive effects of this diet on cancer..

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hybiscus profile image
hybiscus
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23 Replies
Kelly2 profile image
Kelly2

Actually I had a look at this diet today but dismissed it immediately when I saw that they concentrate on eating lots of fats.

hybiscus profile image
hybiscus in reply to Kelly2

True but it’s good fat, no carbohydrates and no sugar and lots of low carbohydrate vegetables... results on some conditions are impressive!

Kelly2 profile image
Kelly2 in reply to hybiscus

Hi. I am not familiar with this but in my opinion the Mediterranean diet is the most sensible.

Deefen profile image
Deefen

I’ve been on a ketogenic diet for 18mths - long before I was diagnosed with ET - but it appears I’ve had ET for over 4yrs. I think it’s an amazing way of eating - apart from all the weight I’ve lost and my mental clarity, all my little niggly inflammatory aches are gone. And if it does that, must be good for ET, which is linked to inflammation. Even though my platelets are around 700-800, I have no symptoms of ET at all - and wonder now if that is due to keto? Yes, it’s high in fat - but I firmly believe through extensive reading & research that we’ve been seriously mislead about the ‘dangers’ of fat for decades.

fee13 profile image
fee13 in reply to Deefen

Yes we've been fed very misleading information on fats, a lot stemmed from pharmaceutical company funded research.

Deefen profile image
Deefen in reply to fee13

Very true. And Big Pharma/Big Business keeps throwing ‘misinformation grenades’ into the press against keto as it’s costing them heaps. Weight Watchers is almost going broke thanks to people going keto - which costs them nothing - and works. And it actually is a very sustainable way of eating - not hard to stick to at all as the good, healthy fats satiate you. Every time I have bloodwork done - my numbers get better and better. My triglycerides are 0.7. My husband’s fatty liver is now completely normal.

JackLina profile image
JackLina in reply to Deefen

I would agree. I do my best to follow this diet but rarely manage it completely. When I do, I immediately notice the aches and pains of inflammation subsiding. Also the clarity of mind is evident. Even with my dietary changes, I feel the benefits and it's worth that extra effort. that and walking every day with my very fast walking dog! If I miss my dog-walking I soon feel the aches again and stiffness in all my joints.

Deefen profile image
Deefen in reply to JackLina

Definitely worth the effort. We’ve sort of got into a keto routine now and find it easy to maintain - even if we eat out. We only go off the rails when travelling - not going to avoid pasta in Italy, or bread in France!

Thank god most alcohol is OK on Keto! 😉

JackLina profile image
JackLina in reply to Deefen

You are so lucky being to indulge in enjoying alcohol. that is something that I can no longer enjoy since beginning the medication. I cannot avoid bread and we too spend time in France so it would be unheard of but I have for many years developed a definite avoidance of pasta. Devil's food!!!

I hope you continue to benefit. All the best

Deefen profile image
Deefen in reply to JackLina

I’m only on baby aspirin - and I hope that’s as far as I go 🤞🏻🤞🏻🤞🏻

JackLina profile image
JackLina in reply to Deefen

Good luck!

D1i2a3 profile image
D1i2a3 in reply to Deefen

Hi am new on here just saw your post on Kito diet have been on it for about a month just tried it as I had put on weight .Have Myelofibrosis was ET Before have been on hydroxycarbamide for about 10 years tried Ruxolitinib didn’t think it made much difference apart from putting weight on my playlet like you are usually 600 to 800 at the beginning they were 1325 not sure were best place for information on kito what you can eat can you have any alcohol only drink on a Saturday if I go out thanks Diana

Deefen profile image
Deefen in reply to D1i2a3

To do keto properly you can’t ‘wing it’ - you need to track the macros you eat each day (protein/carbs/fat) using an app like Carb Manager (it’s free - and it will work out your macros for you). It sounds complicated, but it’s actually very simple and you get into the routine of it after a day or so. I, like you, wasn’t really losing weight and when I started tracking my macros I realised I was way over in protein and way under in fats - when I did it properly and tracked the weight started falling off. I also invested in a blood ketone monitor and test my blood occasionally to ensure I’m in ketosis.

Diet Doctor is a good site for more info on Keto. Or read Keto Clarity by Jimmy Moore (you can download the book and it’s a very easy read).

I still drink alcohol- but lower carb ones - like whisky soda or vodka, soda and squeeze of lime.

D1i2a3 profile image
D1i2a3 in reply to Deefen

Thank you so much yes have been winging it although think I have still lost weight as I never ate any fat for years but probably too much sugar will try the sites as most I ended up on are America on YouTube although I like the guy who tries out the recipes thanks again for your help and hope you keep well Diana

Deefen profile image
Deefen in reply to D1i2a3

Thanks! Hope you work it out!

hybiscus profile image
hybiscus

Thanks for your reply ❤️

fee13 profile image
fee13

I have read the benefits of ketogenic diet but they also advised it should not be a long term diet. Mediterranean diet has been researched to reduce inflammation.

Deefen profile image
Deefen in reply to fee13

One of Britain’s leading cardiologists - Aseem Malhotra- would disagree with you re it not being a healthy, and very sustainable way of eating (I don’t call it a diet). Some of the anti-Keto studies - like the recent Harvard study - were funded by vested interests, like seed oil companies. Both my husband and I are far healthier on it - my triglycerides are 0.7 and his fatty liver has completely reversed. We are both at ideal weights now too. But it’s a choice we all have to weigh up for ourselves after thorough study and reading.

fee13 profile image
fee13 in reply to Deefen

Yes it is hard to find valid information from reputable sources. Best bet is to give things a try and see what happens.

Deefen profile image
Deefen in reply to fee13

Very true! We have to be our own advocates, health-wise.

beetle profile image
beetle

I have had excellent positive results on cholesterol, blood sugar and weight following the Mediterranean diet and have loved it enough to change my way of eating for good. I worry about severely restricting any of the food groups and having tried it in the past on Dr Atkins I found it impossible to sustain. Again, we are all different but I am a strong advocate of Mediterranean eating now.

Pkm52 profile image
Pkm52

My appetite has been poor since starting Hydroxyurea.

So grocery shopping, meal planning and peering into the refrigerator don’t make me feel like eating. I BELIEVE

inflammation is a component in our genetic induced MPN’s. So I am going to make nutritional moves to Keto or Mediterranean. I am hoping Wine is allowed on the Mediterranean diet. Happy to read beetle is doing well on his diet.

Anag profile image
Anag

I’m on the auto immune Paleo, (since Oct. 2018) which is similar. Also almost all foods I eat are organic. I also take supplements. I have ET and Hashimoto, histamine intolerance and many other little things including depression. At the 8 month point of keeping strictly on the diet m, most of these other things disappeared and I had energy for the first time in many years. I now take a third less thyroid hormone, not a sign of depression even during terribly sad events. It’s really worth it to clean up the body and allow the immune system to work properly. As my next step, after doing all I can with diet, I carefully had 2 amalgams out 2 months ago and today 3 more teeth were cleaned up from that terrible mercury. I’m detoxing naturally the whole time. The next 3 fillings will come out in September and 3 more end October.

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