Essential Thrombocytosis

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Essential Thrombocytosis

by Marcyb on Tue Apr 11, 2006 12:00 AM

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Hi, I just came home from the hospital today after being there for a week with intitially a pulmonary embolism and subsequent diagnosis of essential thrombocytosis after a bone marrow biopsy was done. My cytogenetics will not be back until next week so I am not sure if I have any acoompanying disorders. I am on Agrylin instead of hydroxyeurea due to risk of leukemia in later life. I also take aspirin. I am 32 years old and a little freaked out. I am also on coumadin for the lung clot and Cardizem for the tachycardia that the agrylin is giving me. Does anyone have any lifestyle suggestions such as diet or exercise to help me remain or become healthier? Thanks. I have read other posted messages and I feel better already. Marcy B

RE: Essential Thrombocytosis

by NanaMelissa on Mon Nov 12, 2007 12:00 AM

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Hi,

I'm not sure if my lifestyle has helped me (yet) or not. I hadn't had blood tests for at least 6 or 7 years but had not felt well during the past couple of years. My platelets have been high now for 9 months and I tested positive for the Jac2 test.

I am fairly active -- I excercise -- take dance classes (that make me sweat) 2 times a week 1 to 2 hours each and sometimes go to yoga or the gym as well. I find that my limbs do not fall asleep when I keep active.

My main problem has been muscle pain, an odd pressure in my limbs, sometimes they fall asleep, constant headaches (which finally disappeared last week) and fatigue.

Since I've been diagnosed I started to losely follow a ph balance diet (because they say this is cancer and cancer cannot live in a ph balance of 7.0) which means eating a lot more fresh, organic vegitables. See www.ph-ion.com/

My son made me promise to drink fresh (organic) wheatgrass juice daily, so I get two onces @ day at least 5 days a week when and where I can. When I cannot get it I take E3 Live which I have at home or powdered Pure Chlorella. These are supposed to oxogenate the blood. See: http://ask.yahoo.com/20010802.html and http://en.wikipedia.org/wiki/Wheatgrass.

I take fresh bee pollen almost daily: http://www.goddess-within.com/11652.html This is the product I take. Take a look at: http://www.envirobee.com/beepollen.htm

I have ordered a homeopathic remedy from www.mobcitin.com in Germany -- but have not yet received it. It has claims to completely cure thrombo. But we shall see. I've been waiting to get this product since the beginning of Oct. with no luck.

Also I have been researching (on-line) other ways to thin or relax the blood. Garlic is one such way, as is (and I don't know much about this one) Olive Leaf extract. I've been taking garlic (which I believe the pills are contrindicated with blood thinners) and I've tried the Olive Leaf extract for about 2 months -- which claims to relax the blood and also to eliminate parasites. I spoke with one alternative doctor on a radio show and he said to check into leaky bowl syndrom and also parasites as a cause. Though I'm not convinced about all that.

Other than those supplements I also take a liquid mineral called Fulvic Minerals: http://www.vitalearth.org/index.htm These have some good claims re cancer.

I try to take a organic liquid vitamin each morning along with higher doses of natural vitamin E, Ester C
http://en.wikipedia.org/wiki/Vitamin_C

Okay have I overwelmed you yet? I must spend most of my paycheck on my lifestyle now. I have a son and a grandson and I don't want to have complications as I'm only 45 years old.

I also juice fresh organic vegitables. Celery and beets are especially good for the blood. I juice carrots, kale, spinich, etc. and add lemon juice. I do this at least once a day and would do it more often if I wasn't out at work or dance class. It's not cheep, but it sure makes you feel good.

As for drinking water I was told to drink Reverse Osmosis purified water. I also carry Figi water around with me to drink. I don't drink coffee, caffinated tea or hot chocolate, no soda, no diet products, no chlorinated or florinated water.

I stopped eating wheat and all forms of processed foods. No refined white flour or sugar. I felt a great deal better when I did this and my allergies stopped completely. I recently cooked with a peanut sauce that I had in the frig and had a terrible reaction (sneazing and watery burning eyes) and than read the label -- it had WHEAT!

Last but most important is NO BAD OILS such as canola (which is rapeseed oil, sunflower, safflower, etc.). All I use is olive oil for everything. This is one of the most difficult to control because we like to eat out once or twice a week.

I've also read that salt is bad for any blood disorder. And drinking lots of water helps.

Okay, I hope this information helps you. Friends tell me that if I wasn't this healthy in the first place I might be a lot sicker. My doctor says that nutrition/lifestyle does not effect thrombo.

I guess all that I can suggest to anyone who wants to be healthy is eat whole organic foods, limit the amount of meat, wheat and chemicals you put in your body, drink plenty of good water and exercise at least 3 times a week.

I am very curious what the link is between all of us patients who have this. I've read that chemical exposure, radiation exposure or electrical exposure may play a part in acquiring this disease. I'd love to see a profile for all of us patients. Ciao

RE: Essential Thrombocytosis

by Cyteh6 on Sun Dec 02, 2007 12:00 AM

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I am starting on the vegetable juice diet, going more alkaline vs. acid, cutting out meat. My homeopath said it is most important to keep hydrated and take omega. Even though homeopathy has not helped I believe your approach is the about the best way to minimize side effects that can develop down the road. Best wishes.

RE: Essential Thrombocytosis

by roula on Sat Jun 28, 2008 12:00 AM

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Hi everyone,

I too have ET and have had it for 15 years. I am now 49 and was diagnosed after I had my 2 children.

I was on Hydrea at the beginning and because of the risk of developing Leukemia my doctor took me off it. I was then on Asprin for about 6 years but have stopped that too.

My count is now at 710 and goes up and down. I also have an enlarged spleen and have had the JAK2 mutation blood test and I am negative.

I don't totally understand what that means but my doctor said that I am lucky that it is negative. He also says that its not if I get worse its just a case of when. He says that this condition usually goes for about 10-15 years before things start to go wrong. Well I've reached 15 years and I'm starting to get nervous.

My doctor insists that I have a well balanced diet and a no stress life.

Yeah right..........thats going to happen....no stress.....

But he insists that stress makes this condition worse.

With the diet I personally don't think it changes ET at all but it does ensure our immune system is in top order and able to fight off whatever is thrown at us.

I too wish I knew more about this so if anyone has anything that they feel can help please let me know.

Good luck to you all and strength to all of us.

RE: Essential Thrombocytosis

by ruselrones on Thu Jun 10, 2010 10:55 AM

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ARelative has been diagnosed with Essential Thrombocytosis. The condition was detected due to a high platlette count, and confirmed by a bone marrow biopsy.I also prefer liquid mineral called Fulvic . Extract and Olive Leaf Extract. Modulating the immune system is key, especially in individuals with autoimmune disorders.

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