I finally had a blood test today - my first after the fast. My platelet count was 476 on May 2nd. My 10-day fast ended on 5/7. My prescription is for 5.5 grams of Hu each week, but for at least the last two weeks, I've been taking only 4.5. My platelet count is 387 today (5/31). Can words convey my joy?
My oncologist wants my count to be under 400, but because I am averse to medicine (especially poison, even mild poison like Hu), I told him my target is under 600. This means that I will take only one Hu per day (further reducing my Rx from 4.5 grams to 3.5) until my next blood test. If and when I have established a new dosage and stable platelet count, I might do another 10 day fast to see if the effect of that is more generally a permanent reduction in platelet production (I'd assume through metabolization of the extra megakaryocytes).
I will keep you all posted.
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dscotese
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Hi, thank you for sharing this with us. However, I would strongly advise anyone thinking of doing something similar to speak to their haematologist and doctor first. Maz
I agree that advice from professionals is always a good idea. I think it's even more important, however, to pay attention to your own body and to take risks. Those two have to go together, the risk-taking and paying attention. I find that reliance on professionals often inhibits us from growing and learning and having awesome lives. At the same time, ignoring professionals is foolish.
I guess this touches something about which I'm very sensitive. The word "Shamanism" comes to mind. A shaman represents two potentialities, a good one and an evil one, both proceeding from the trust we put into others. I am aware of far too many situations in which such trust has been violated, which is the evil potentiality. We can't explicitly know whether or not another person loves us, which is ultimately the only protection from the evil, but we can set our lives up in such a way as to make the question easy to answer. Paying attention and taking risks does that when they are paired effectively.
Anyway, thanks for replying, Maz, and helping people who forget to look before they leap remember that they really ought to, for their own sake.
DH65 pointed out that my link was broken, and I tracked that down to a small bug. If you write a sentence that ends with a link, you'd end the sentence with a period, and that's what I did. The period was interpreted by the code as part of the URL, which makes the URL fail. I edited my post to work around it, but I'm sure many other posts have been a small source of frustration for other people who wanted to visit someone else's link.
Thanks piggie50, and thanks DH65 for pointing out the problem. Apparently, there is a small bug that causes the period at the end of the sentence to be interpreted as part of the URL The URL actually ends with "html" so I added a space before the period and it's working now. I'll send support a message.
I hate the idea of poison going into my body, and am putting off meds other than aspirin for as long as possible, in agreement with my haem. However, I fail to see how going vegan will sort out my knackered bone marrow, which is the cause of my PV! I think it is very dangerous to encourage people to go vegan rather than take meds. I think it is far better to enjoy a healthy diet and drink large quantities of water, rather than abstaining from plenty of things that are good for you.
healthy diet is vegan. believe me eating factory farmed animals and consuming dairy is killing people slowly and the planet, not even to mention the unecessary suffering of innocent animals.. did I mention how animals are seen going into slaughterhouses covered in tumours? You think us consuming that is a good idea. Not to mention the fact the human body is not designed to eat meat.. check out What the Health, Forks over Knives and if you can stomach it Earthlings Happy educating xxx
hi ruby i agree, i am a long time vegetarian and quasi vegan and have pv. i also am hypersensitive to most drugs and chemo is not on my list of possible treatments. also, when i donated blood my platelet count went UP!!! i take many supplements, drink lots of water and listen to my 75 year old body. my fatigue has caused my activity level to go down, but i am still independent .
i hope that those who readily take chemo without research should get on a computer and find out what works for your body.
everyone doesnt respond to the same treatments good luck
There's a book titled "Antifragile" by a guy named Nassim Taleb which explores some of the ideas behind my own thinking. If you would like to see how going vegan might (might!) sort out your knackered bone marrow, that book is probably NOT the best place to start (the book I mentioned in my blog post, Fasting and Eating for Health by Dr. Joel Fuhrman, would be much faster).
I only mention Taleb's book because your post inspired me to provide you with the opportunity to expand your view of things.
One of the frustrating things I've discovered in my 48 years is that there is often bad stuff mixed in with good stuff. Surreygirl74 touches on this below. She and I disagree about humans being designed to eat meat, but modern agricultural practices most certainly were not part of whatever designed us (God or evolution) and our digestive systems. I think the best idea is to experiment (mildly!) and see what you come up with. This is how I was able to reduce my meds (poison, remember) by about 40 percent in the last two months.
I agree with you rubyrubyruby, I eat a healthy varied diet, meat fish vegetables etc and drink plenty of water. I also have the odd glass of wine when I feel like it. I exercise by walking whenever I can. I started taking hydroxy when I was 59, nearly 4 years ago now. It's reduced my platelets considerably and the risk of stroke/ thrombosis, I have no side effects other than dry skin ( my skin has always been dry anyway) . I trust my Dr's and feel I have a great life which I intend to continue for many years. Diagnosed PV 12 years ago.
DH 65, if you wish to read the blog from dscotese, click on the link scroll down and on the right hand side and click on the 10 day fast.
Best wishes to everyone
Judy
This is the best post I have seen! I don't need to read your blog. I went vegan in October 2015. Best thing I ever did, the only regret, I didn't do it sooner! My ferritin level has gone from 5 to 7 and now to 10, and guess what you don't need a corpse of another being to get your iron stores up. I was veggie for 20 years but was drawn back into eating fish when I was ill before my diagnosis, I didn't need fish or meat, I needed aspirin and venesection. I am surprised only by the fact you have to lower so low, my platelets sit around 600-800 and have gone as high as 900+ and I have still avoided any toxic meds. I have PV. What do you have ET or PV? Bravo - keep up the good work. Vegan diet is the best diet out there for everyone, the planet and for the animals. There is enough pain and suffering in the world Namaste
I have ET. I didn't know the difference until I read your blog. Thanks! I'm relying on my faulty memory for my assumption that my bone marrow has too many megakaryocytes (platelet factories). My Red Blood Cell count is fine - actually a little low because of the Hu, and so each one is swollen with hemoglobin.
My Dr. probably chose a low level because I'm relatively young for someone who has ET. I don't know how your right to your body works in the UK, but it seems that I can do whatever I want, so I chose to keep my count under 600 and argued with Dr. whenever he said 400. He also stopped insisting that I take more poison to get it as low as he wants it.
I write stuff in my blog because I, too, feel that sometimes, for some people, what I write is the best thing they'd ever see - if they see it. So perhaps you will read more of what I write. This might help: It is my intention to make the world a better place. I am realizing this intention by being the possibility of innocence, curiosity, and understanding for others. People like you, who speak up in defense of minority viewpoints because you see value in them, are rare gems, so thanks for being you and doing that.
Ah glad it could help! So glad more of us are blogging. I did it to stop people asking me about my blood cancer to be honest and put everything else in there so they got an understanding, even some of my so called friends regularly say stupid things to me like have you checked your iron and your B12.. I need a t-shirt saying "I can't have iron" as even the GP sent a letter about it the other day #epicfail.
How young is relatively young? I am relatively young for someone with PV. I also met the lady who was first diganosed with ET and she was young and never taken anything and her count has gone up over 1million and she manages and copes, she inspired me actually.
Definitely will follow your blog and thank you for your kind words!
I guess "relatively young" really means "young from what I think I know about the ages of people with ET." I'm 47. And now I remember reading that the onset of ET is usually around 40, so "relatively young" is most likely just incorrect. And my doctor just relies on drugs way too much.
I'm sceptical about this. I don't want to offend you at all, and applaud anything that helps tackle this disease, but, I have been vegetarian for over 30 years, not eating meat or fish because I don't want animals to die to feed me and I'm appalled at the way they are treat in slaughterhouses and on fishing boats.
I also have very little dairy in my diet as I realised years ago that it aggravated the problems I had with my sinuses, and this has been better since limiting dairy. I do have a very healthy Mediterranean style diet and take in appropriate protein and also supplements especially B12 as this is normally found in animal products.
And yet, my Jak2 gene still decided to mutate a couple of years ago and give me E.T.
I have tried to become even more "healthy" with regards to my eating, including more grains, super foods, hydration and supplements and my platelets continued to rise until I was experiencing optical migraines, extreme exhaustion and aches and pains.
I don't like the idea of taking "poison" at all, it terrified me, but on balance the idea of having a stroke and being left disabled or dying and leaving my family terrified me more.
I'm delighted for everyone who benefits from your suggestions but in my experience, it did not stop the mutation from happening or platelets from rising.
I'm sure that a mutation (JAK2, for example) cannot be reversed with a diet. The effect of that JAK2 mutation, as far as I understand, is that your bone marrow stem cells have a greater chance of becoming platelet factories rather than other bone-marrow cells (like red blood cells). I don't think your JAK2 mutation happened a few years ago, but that you were born with it. My understanding is that ET usually onsets at about 40 or so, and this suggests to me that it takes 40 years for the platelet-factory cells to outnumber others so much that your platelet count is elevated.
My hope, as expressed in my blog, is that the normal bodily function of getting energy when you aren't digesting anything functions by metabolizing the "extra" platelet factory cells ("megakaryocytes"). The phenomenon of the body metabolizing extra cells when you do a water fast is pretty well documented, as shown in Dr. Fuhrman's book. Whether or not the megakaryocytes in our bone marrow count as extras in that phenomenon is the real question for me.
If you find a licensed physician willing to tend to your care while you consume only water for 10 days, please try it and see if it causes any change in your platelet levels, and then see if that change is permanent. So far, mine has been, but I've stayed mostly vegan since I started because I don't know whether my platelet count is down because I have fewer megakaryocytes or because I'm vegan. I will eventually figure it out, I think. That is my plan. Anyone here with too many platelets can help - especially if you don't bother giving up meat. Eat meat - fast for 10 days under the care of a doctor - see if your platelet count improves, and if it does, see how long that improvement lasts after you eat normally (including meat) for a while.
A 10 day water fast is pretty risky even for "healthy" people.
The body goes into Ketosis and that is when it starts to metabolise or "canibalise" itself for energy. The first things to be used up are fat stores and muscle mass as the body tries to carry on the natural cell replacement. Using up the protein in muscle, leads to muscle wasting which in turn leaves us feeling weak and tired.
As blood is vital for the body to function, it will carry on making this so it can maintain vital organs and keep us alive. It will do this to the detriment of other things such as hair, skin and nails as the body has to choose which functions are more important. Making blood will always come first.
There is the risk that someone fasting will drink even more water to stave off hunger pangs. This can lead to Potassium and Sodium being "flushed" out of the body. These can drop to dangerously low levels with very few symptoms and unless you have access to daily blood tests there is no way you could know this. The effect can be fatal.
After "starving" for 10days, there is also a risk that your body would suffer from Re-Feeding syndrome after finishing your fast and beginning to eat normal amounts again. Once the body has reach the ketosis state, food should be re introduced gradually, in very small portions to avoid the electrolyte inbalance that this can cause. This again can be fatal.
I feel that my body is already under a lot of stress, and do not want to add to that. Starving (which Fasting really is) would put it under a great deal more. I dont wish to recreate the symptoms i am already feeling by purpously doing something to my body, which i beieve is harmful. My body actually needs more help through good nutrition, not by "punishing" it even more.
I work in eating disorders so have seen first hand the effects fasting/starving has on the body, and the short amount of time it takes to reach danger levels.
I know we all desperately want to find a way to reverse/cure the blood cancer that we have, but unfortunately i dont believe that diet will. What diet will do is give our body the nutriton it needs to carry on for us, and keep us in the best health possible. I shall carry on offering my body a "carrot" to keep on working for me, rather that a "stick" for going a bit wrong.
Do you have sources for the info you provided? Dr. Fuhrman's book is filled with footnotes. Unsourced claims lead to a lot of suffering, so I think it's in everyone's best interest to check out wherever we get our information.
Re feeding syndrome is a widely known phenomenon first recognised in Japanese prisoners of war who were liberated/surrended after the second world war. As they were all malnourished, their liberators (who thought they were being helpful and kind) gave them normal portions of meals and were confused and astounded when they began to die. It is now known that it is the sudden shift of electrolytes and the way a "starved" body metabolises fats and carbohydrates that causes this.
In the clinic i work, this is taken very seriously, and a patient who has starved for 3-5 days prior to admission will be treated as a re-feeding risk and started on tiny portions of food and monitored daily with blood tests. Portions will be increased very gradually, taking up to a week to reach normal size.
I have also witnessed patients who have taken in nothng but water or minute amounts of food and excess water, who on having blood tests have been found to have dangerously low levels of potassium and sodium, so dangerous that they had to be sent to a general hospital to have these administered intravenously over a few days. They had reported no worrying symptoms and this was only found by blood tests. The main risk ( but not the only one) with re-feeding symptom if undiagnosed is heart attack.
In my job, i work with G.P's, Dieticians and Nutritionists who do not promote "faddy diets" or even believe in "super foods". Believe me, i have asked them if there is anything i can eat or not eat that will slow down platelet production. Their combined consensus is "No"
These points are not secrets , they are medical/biological facts.
Thanks! I wonder if anyone has attempted a reconciliation of Dr. Fuhrman's work and the studies he cited with the evidence from starved patients. His work suggests that you do need to be under the care of a physician if you undertake a water fast for more than a few days because your electrolyte balance is important, and because of other factors.
What puzzled me was that you didn't address my direct experience, which was predicted by Dr. Fuhrman, and was beneficial, which is that after being in ketosis for up to about 72 hours (longer in men than in women, I think), a body that is no longer getting food to digest will start metabolizing toxins (instead of flushing them), and once the toxins are gone, it will start metabolizing whatever evolution considers "extra cells." This last is what I was after, megakaryocytes being the "extras" i was targeting. I'll know in a few days if the reduction in my platelet count is something that lasts more than a month.
I have a problem operating from a basis of fear, so your original post really rubbed me the wrong way. It's true that a lot of people don't pay enough attention to safely take risks that humans have been taking (generally forced into) for thousands of generations, but I would hate to see our tendency to pay attention to our bodies get replaced with a general fear of experimentation. The people on HealthUnlocked tend to be the ones who pay more attention too.
I recently watched "What the Health" and "The Future of Food" (among several other documentaries) that might help anyone who suspects that food might positively or negatively affect health.
I am a clinical nutritionist and specialise in conditions the Jak pathways. A plant based diet certainly can reduce upregulated Jak2 genes, in fact there is so much you can do to reduce overexpression of these genes. Dairy for example is a source of both estrogen and prolactin both of which significantly upregulate the Jak2/stat pathway.
Hello can you share with us what we can do to reduce up regulated JAK2 genes and reduce over expression of these genes?
So dairy I assume is milk, eggs, cheese etc, that we should avoid or minimize intake?
Your post is intriguing and sounds like you have some good information that could help those of us that are trying to fight things holistically. Turmeric has also been proven to minimize the JAK2 pathway as well.
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