Fermented foods

[Camelian]

Is fermented milk and yoghurt ok to use? I've read there's lots of health benefits but also read it has vit k2 in it so not sure if it's good for ET as read vit k thickens blood??

[Superwoman]

Hi this is interesting, as Vit K is a very important not only for our minds but our bodies as we get older. I have had a few stomach issues of late and have been seeing a gastroenterologist, he recommended that I take a live culture drink called Symprove which I am doing it is a three month course, it was tried at UCL London, and many patients have been pleased with the results, especially anyone suffering from IBS and diverticula disease, and anyone that has been on too many Antibiotics over the years as this strips the gut of all the good bacteria, it’s not cheap either but so far so good.

As regards to VIt K 1 and 2 they are important for our bodies and can be found in most green vegetables like Broccoli, Kale, in fact most green vegetables, if you eat lots of green veg on a daily basis, The Vit K1 eventually converts itself into K2 which is the important one. Another source of Vit K is from fermented yogurt like Kefir which is something I have been taking for a while as well and my bloods are all normal, (long may it last)

Long and short of it, if you are worried speak with your Haematologist, nurse or GP, the Doctor I am seeing knew all about MPNs so would not of suggested it, have also spoken with a nutritionist and she also knew about MPNs which in this day and age amazed me as when I tell people that I have ET they look at me blank😟 so it was good to get some good advice.

Not sure if this helps in anyway, but it would be good to hear from anyone else about Vit K 1-2

Jean

[Camelian in reply to Superwoman]

Thanks Jean yes that really has helped.

[Anag]

Hi Camelian! I’ve read on one ET patient’s blog that Vit K caused her thrombos to skyrocket, but she was juicing on a full health kick and was getting enormous amounts of K. I eat lots of green leafy salad, not too much broccoli or kale because of the extra high K vitamins. My new doctor was the first doctor that knows something about nutrition. Halleluja! She said that we shouldn’t overload ourselves with this particular vitamin, as we do for ex. when we take Vit. C to fight a cold. I take 1.5 g every 2 hours and it works. Cold gone in 2 days. Regarding fermented foods, I am a huge fan. Our gut loves them! Happy gut, happy person. I make my own sauerkraut (fermented for 2 weeks at room temperature) and Kimchi (fermented for 10 days in the fridge). That’s the best way. It’s actually quite easy. All you need is a bit of courage and the right stuff. A bowl of well-made sauerkraut has the same amount of lactobacilus as 3 bottles of Omnibiotic! There is a catch with kefir and yogurt! If you buy them, there are often no bacterias in them, because they are generally pasteurized and homogenized. All good bacterias then die. Some companies add bacterias to their products. fermented foods are also often treated. Making your own yogurt is really simple. Please start with grass fed organic milk only! All other milks in our industrial time are bad for our health! Heat up 2 Liters of Full fat milk, but only to the point, where you can stand dipping your pinky in for 5 seconds without it being “hot”, else the bacteria don’t survive. Stir in 1 cup of yogurt with cultures or buy the cultures. Wrap the whole, closed pot with a blanket. Put the whole thing in the oven (don’t turn it on!) just keep everything warm as long as possible. Speeds up the process. Leave overnight or 8-10 hours. Should be thick. Pour into a bag made of cheesecloth and let the water drain. The more you drain, the thicker the yogurt. You may drink the water that’s left over. Also healthy. As superwoman said, it’s super important to keep the gut (and microbiom) really healthy. It the center of our health! Hope to have helped! Anag

[Camelian in reply to Anag]

Wow it must be easier than it sounds??

I'm glad your hem confirmed you should reduce ya vit k - the conflicting information from different hems is a little concerning though.

I will definitely include some of the good stuff you mentioned in my diet it may have to be the shop bought varieties thought as I'm limited with time. Do you eat rice or pasta? It seems like potatoes are a no no. I'm not gonna lie I'm struggling with what to eat . I'm limiting my bread and when I do have it i have rye and sourdough it seems to agree with me more. I have porridge and fruit for breakfast generally skip lunch then have an evening meal either fish or chicken with salmon with salad or veg. I do still have a small amount of potatoes on my Sunday dinner. I think the food restrictions are pretty hard to get your head around I use to love a bowl of branflakes😋

[Anag in reply to Camelian]

Hi again Camelian,

SInce I jumped into the Auto Immune Paleo Diet (but modified to fit me) I am feeling the way I did, when I was 40 (I'm 53). It was very hard at first, but I am so happy I did this. I don't crave anything anymore! I eat almost 2000 cals a day and have lost 35 pounds in 19 months without trying. No carbs at all, except some rice cooked in lots of water to get rid of arsenic-this plant loves to pull it out of the ground, and 1-2 x a week oatmeal. Wheat and other grains (not just gluten) cause me digestive problems (distention). No milk products except feta cheese (lamb/goat's milk). No night shades (tomatoes, aubergines, artichokes, potatoes, physalis, goji berries). I still eat potatoes 1x per week. Nothng processed. I consume a lot of olive oil-more than a liter/week for the family, coconut oil, organic grass fed butter. As much bio as possible. Organic animal proteins. I can pay for this, since we stopped eating out. That saves tons of money. I don't do gluten-free. If I shouldn't eat something, I don't try to eat something that looks or tastes like it. I just try to cleanse my body, so it has a chance to fix itself. I studied a lot and was betting on the fact that if my body is freed from all chemicals and foods that bother me, my immune system will have a chance to slow down or even heal my ET. The researcher from Copenhagen University said that ET has a lot to do with the immune system. They are starting human trials on the vaccine they have developed that cativates specific immune cells that could destroy our mutated megacariocytes. That would be amazing. I hope I've helped.

[Camelian in reply to Anag]

Yes anag thank you very much very informative certainly appears you've done your research. Whats the name of the researcher from Copenhagen I'd like to read a bit more about that it sounds promising. I'm slowly starting to change my diet I'm addicted to my morning porridge though. I work with a lady who had all sorts of health problems which she said she's now either reduced symptoms or totally eliminated simply by changing her diet so I definitely agree with your theroy about eating the right food. My workmate like you has done lots of research around food and eats a lot of the food you've mentioned- she's also gonna give me some tips on what to eat. I'm 57 so I'm hoping changing my diet has the same results as it did with you. I'm also praying they find a cure before I'm 60 cus I dread the thought of going on medication because I react to everything and when I feel nauseous, as it appears you do with most of the meds used, I just want to sleep I hate that feeling it knocks me for six. What part of the country are you from?

[Anag in reply to Camelian]

Hi Camelian, I'm a Greek-Canadian-American living in Austria! : ) Studied in London many years ago. I don't feel nauseous from meds. I get heart throbbing from Anagrelid, but only when I take 2 tablets together. I take 4, spread out as far as possible throughout the day. First one at 7am and last at 11pm. The information regarding the research and vaccine are from Prof Mads Hald Anderson. It was on this page from the PVReporter 3 days ago. "Using T-Cells to Fight MPN - CALR and JAK2 Vaccine". The diet has changed the life of many of my friend, one who was fighting with all kinds of symptoms and weakness for about 15 years. She's 63. Had tried everything. She feels great and our skin is so beautiful. All my eczema in gone. My whole family is healthier. No more neurodermitis, no more brain fog, etc. You can have oatmeal porridge, which we love! Add applesauce, blueberries and maple syrup. Yummy! 60 is still young! Praying is a must. The Lord has been leading me well. I've found reason for this illness. I am more aware of my life and enjoy everything in it more than ever before. I will pray for you too. Anag