Cause of Polycythemia Vera
★★★★☆
I am a journalist who was on a big story, and uranium, silicate glass, and antimony were found in one burner of my gas stove. 9 months after exposure after I started passing silicate glass kidney stones. Uranium was also found in my hair and the urine of one member of our family. Less than 2 years later, my platelet count was super low, and hemoglobin creeping up. Iron also was elevated 6 years later. Am now dealing with a diagnosis of polycythemia vera.
My understanding is that it's often attributed to genetic mutations due to radiation exposure and is not usually hereditary. Also, ATSDR study in PA where there were increased incidents of polycythemia vera showed an increase in exposure to coal dust with uranium in it. Just thought I'd comment about my experiences. If you smell a rat in your personal situation, there may be one. Two known criminals went to jail in relation to my case.
Wishing all of you the best outcomes.
(Charlotte, Nc)
08/03/2018
Digger, I have similar experiences and after having been ill for many years with a syndrome that had many debilitating symptoms I came on something that was helping with most of those symptoms and it is called Imusist. Then my nueropathy got much worse and my feet and lower legs went black and red and it was very painful. I added the Hydrogen peroxide regimen and took EDTA to remove heavy metals. I also cut out all carbs to eliminate lectins from my diet and am on raw Dandelion root and B17. I am doing much better and my feet are looking good. BTW, I also drink distilled water and that helps my iron overload dramatically. I will check back here in case you want more details.
(Seattle, Washington)
02/02/2023
What hydrogen peroxide regimen are you on? Do you have polycythemia Vera?
(Las Vegas)
06/30/2022
Dietary Changes
★★★★★
I have just managed to get hold of a copy of Jason Fung's fasting book - so hopefully, more info is on hand.
One of the things I had heard from a cancer doctor - was when fasting for cancer - water only, and then distilled water at that. Having been eating ketogenically for a while - fasting is not a hard thing to do!
(Usa)
07/23/2018
Dietary Changes
★★★★★
If you want, just look up foods on the internet that thin your blood and avoid the ones that thicken your blood. I no longer take hydroxyurea or get phlebotomys and am normal!!
(Nj)
12/31/2014
What was the diet?
(Srilanka)
01/22/2015
(New York)
01/27/2015
(Malta)
02/01/2015
Very good news to hear that you learned how to optimize your health and return your red blood cells to normal and healthy levels! Please do let us know which foods you ate, it would help out a lot of people. Polycythemia Vera also runs in my family. Thank you and good health to you and all other PV sufferers out there.
(New York, US)
02/01/2015
(Nampa, Idaho)
02/09/2015
(India)
02/10/2015
Hi Bonnie, Thanks for sharing your experience, but you are not saying which food you ate, so that we can also try and get benefited. Thanks..:-(
(Saffron Walden, Essex)
02/12/2015
I would like to know the diet for polycythemia vera please as my wife is not getting on with hydroycarbamide.
(Chicago)
03/29/2016
In my and most cases enlargement of the spleen and a rise in hematocrit, platelets and white cells were not inhibited by diet and supplements. The drug that does slow or stop PV is Pegasys, a weekly dose of Interferon. There is not other drug that improves the bone marrow and attacks the underlying disease. I take many a supplement and they help, along with exercise with your overall health. I avoid supplemental B6- B12 and Iron since they part of the blood making process.
(Saint Petersburg, Fl)
09/12/2022
(Usa)
02/24/2015
Isn't the 800,000 your platelet count? My platelets were at 1 million and normal is 200,000-400,000. I am totally confused. I had essential thrombocythemia diagnosed 3 years ago. (Jak2+). Now after new symptoms and a bone marrow biopsy I have polycythemia vera and all my counts are high. With hydroxyurea my platelets have gone down to around 500,000.
I guess I just want to know if I am mistaken in thinking that the numbers you quoted are actually a platelet count not a red blood cell count??
(Mo., US)
03/20/2015
I have been eating kiwi's, taking turmeric and red wine extracts along with ginko biloba. My counts stay down for a ten to 12 week period before needing a phlebotomy. I too am interested in the above diet. Given what I have researched and tried on myself I am skeptical that Bonnie was able to achieve that great of a success. Do share Bonnie, what's your secret?
(Faithville, Us)
03/20/2015
Water thins the blood, most people are at some stage of dehydration but aren't aware of it, and there are a lot of websites that have loads of information on thinning the blood. Bonnie stated she searched for them and added those things to her diet. The internet is our library.
(Charlotte, Nc)
07/05/2015
What was the diet that lowered your planet count?
(Hod Hasharon)
07/11/2015
Hi bonnie Can you please ellaborate about the diet? I have been diagnoised with pv for 11 years now and I also use aspirin and hydrea. Would love to hear about other natural treatments. Thanks a lot Shimi
(Texas)
08/12/2015
I have just been recently diagnosed with PV, I have learned that you have to stay iron deficient, that is why the platelet count stays high. I am certainly going to research this diet, I do not like taking blood thinners and hopefully I won't have to for very long. My hematacrit when diagnosed was 64.8, normal as you know is less than 45, I was fixing to have a stroke, very important to keep under control. I was just diagnosed at the end of June this year so this is all new to me. Thanks for all the info this far.
I was told by MD Anderson physician that you never take vitamins with iron and the platelet will always be high. Just keep on monitoring, I still go twice a week. Stay healthly everyone. Take care
(Florida)
08/23/2015
Hello, everyone. Bonnie is my mom, for her diet we researched what foods are high and low in vitamin k and iron. She eats foods that are lowest in each of these. Lots of raw garlic and cayenne pepper. Lots of pomegranate juice. Food high in salicylates but also check they are not ones high in iron or vit k. Lots of water. Omega-3 righ foods. You have to follow a very strict diet.
(SC)
04/25/2021
(San Diego, Ca)
08/23/2015
★☆☆☆☆
Hi, I was diagnosed with PV 4 years ago and am seriously allergic to hydroxyurea. I am a Registered Nurse and understand the progression of PV but have no knowledge of holistic foods/ medicine to relieve burning/itching skin that keeps me awake at night. Please share any experience/knowledge others have experienced regarding reducing high RBCs, Platelets and WBCs headaches and burning/itching skin. I was diagnosed at age 51. Thank you, Alicia
(Rhode Island)
11/03/2015
(Saint George)
11/03/2015
I also have been diagnosed with PV / ET in 2009. I believe It is your platelets that are going that high not the red blood cells which makes it essential thrombocytosis or ET.. the red blood cells also get dangerously high with PV but not those numbers you were using. maybe you have essential thrombocytosis. Pamela
(Ny)
06/22/2016
I am contemplating interferon. I am also listening to the talk about defeating p.c.v. with an herbal approach. Did you consider that? Have you had any side effects from the interferon? Thank you
(Hyderabad, India)
07/03/2016
(Los Angeles, Ca)
09/26/2016
I was diagnosed with PV about 20 years ago. Taking Aspirin low dose, phlebotomy every 4-6 weeks. Now was prescribed Hydroxyurea. I am afraid to take it: looks like it has a lot of side effects. Also developed Iron deficiency. Constantly feel tired.
What food/supplements can I take to improve? Can anyone recommend a diet?
(New Zealand)
03/23/2023
Hi Eli, I was diagnosed with Polycythaemia Vera Almost a year ago, at the beginning I was having two Venesections a week, I was taking a small Aspirin and a Hydroxyurea capsul once a day, I've had no problem at all with that medication, Venesection went down to once a fortnight then once a month until my blood count was normal, I then went five and a half months before my next Venesection and since that one, I have not have not been asked to do another for almost three months. I have the People at the Venesection unit along with my GP Checking my blood count, Hope your well and all others on this site. Denis
(California)
10/21/2016
I've had PV JAK2 + for 2 1/2 yrs. I take Floradex with iron an herbal supplement that has no side effects. I have been able to get my ferritin level from 6 to 12 over time. It hasn't changed how my Hct goes up, or effected my platelets or WBC. My Doctor is not supportive of me taking this but I track all my lab values so it is obvious it hasn't effected anything but my ferritin.
(Delhi)
11/26/2016
(Mn)
01/31/2017
Hi, I have high platelets (Essential Thrombocythemia, a Jak2 gene mutation), diagnosed in 2011. I actually had symptoms for about 10 yrs but the MDs were unable to discover the cause. My main symptom was burning in my great toes.... which was caused by clotting in the bone marrow of my toes. I would get relief for 4 days by taking ONE ibuprofen. (NSAIDS mess w your platelets, make them less sticky).
Any way, I am on Hydrea 500 mg daily, and my platelets are now fairly normal. The burning stopped soon after the platelets decreased. They went from a high of 850,00 to 450,000. I would prefer to stop the Hydrea, aka Hydroxyurea, but would risk clotting again. (The Hydrea side effects I have are dry skin and some darkened facial spots.)
I am an RN.
My RN friend was diagnosed with PV last yr. She slowly improved after diagnosis, and phlebotomies, and she takes Hydrea 1000 mg daily. Her itching was very bothersome. I suggested she take a supplement called Cellular Energy and the itching stopped!
(USA)
07/31/2023
Rosie, research Nattokinase and Serrapeptase for blood thinning and fibrin /blood clot dissolving.
(Tennessee)
02/01/2017
Dear Rosie,
Thank you for sharing this. I am fascinated that one ibuprofen would improve your condition for 4 whole days.
20 years ago I had a fallopian tube rupture as part of a complication of a tubal pregnancy. I had multiple surgeries and blood transfusions because of life threatening blood loss. They never concluded the source of the continue bleeding (this was after they had tied off the ruptured tube). I did have ITP at the time and so was always low in platelets, but had had surgery before and since with out complications.
However, prior to the rupture (I didn't know I was pregnant) I had been taking ibuprofen regularly for headaches.
I have suspected before that the ibuprofen use had made the bleeding situation worse, especially on top of my already low platelets.
I think it isn't recommended to take it up to 20 weeks before surgery. Of course, you never know when you will have surgery.
~Mama to Many~
(Somewhere, Europe)
02/02/2017
(Tennessee)
02/02/2017
(Argentina)
04/22/2017
Low iron is high platelet (high blood clot risk) and viceversa...
Iron lowers platelet counts.
But if your levels of iron and iron reservoirs are over the top and you keep dieting on iron high foods you will have problems.
Iron foods result in low blood clots, if your body doesn't have sufficient iron you will probably suffer from blood clots.
BALANCE the body is the result?
(Nashville Tn)
05/28/2017
I want to heal my polysythemia vera and would like learn specific foods to eat during my breakfast, lunch and dinner.
(Canada)
05/29/2017
(Wah Cantt Pakistan)
08/17/2017
i m 56 male .weight 113 kg too much. got two heart attack 4years and two years ago .both time my hb was 19 and hct was 52.unfortunately my country pakistan. after two years diagnosed P.V secondary .polibotomey 6 time. now it controlled.my hb is 11.8 and hct 47. iron in body just 9. can I take Omega 3. because I have eye decease. please tell what can I do please please
(California)
09/13/2017
I diagnosed with PV last week, age 42, have healthy life routine. Thanks a lot for sharing this Bonnie, this is very promising and I am not wrong to the followings. I have started having 1/2 clove raw garlic with glass of water on empty stomach every other morning. I also have mix of 2 table spoon of organic apple cider vinegar( with mother) in a glass of water on empty stomach in the morning. We use a lot of turmeric and garlic in Persian food. Good idea to check the vitamin K. I am so glad that I found this fourm. Does any body know about effect of kiwi & guava for PV patients? Thanks, Semi
(Arizona)
09/14/2017
★★★★★
My test results have also changed drastically with a VERY strict diet. After 6 small strokes in May, my NMD put me on a vegan like diet. I was getting phlebotomized every 3-4 weeks. Staying low on iron and vit k is a must, but you also eat to clean your blood. Vegis until you can't eat anymore. We looked up a ton of vegan recipes on a website called knifesoverforks and eventually we added very little organic poultry and wild caught salmon along with goat or sheep cheese. This makes it much more sustainable for our family. I haven't had a phlebotomy in 3 months now and my tests are normal. Foods can heal. 🌹
(Ca)
09/14/2017
(New Zealand)
09/30/2017
I am interested in What you take - especially the blood palace . What brand do you buy and how much do you take also has it stopped your PCV from going up . I have tried many things and are still trying to get on top of my condition find it hard to balance as I have also very low ferritin levels.
(Las Cruces, Nm)
12/31/2017
(Durban, South Africa)
01/05/2018
Please can you send me the foods that helped you with polycethemia Vera and the diet that I can use?
(New Zealand)
02/03/2018
Cannot see how thinning the blood could ever lower the red blood cell count but good luck to you.
(Tacoma, Wa, Usa)
04/04/2018
I am interested in what you ate that helped you.
(Pakistan)
04/30/2018
Hi could you plz tell me about which food I should take as I'm also a PV affected. Thanks
(New York)
07/30/2018
(Quebec)
08/25/2018
(NM)
09/12/2022
My Menu for the day I was just told I have polycythemia vera and went on a massive dietary research for five days. Here is what I found we can eat. This is the lowest iron foods, at least in the USA. Salmon (not raw) Tuna (not raw) White meat chicken (no skin) Garlic Avocado Apple Pear Black tea (no sugar) Green tea (no sugar) Coffee (no cream or sugar) One can eat white cheeses in very small dose if desired. I saw a site or two that said we can eat walnuts, and also boiled eggs, but I am still checking on that. I've seen some good talk about pomegranate juice and cranberry juice. Herbs: (See if you have an herbologist in your town, otherwise call one on the phone and start a conversation about an herb plan.) Research says these help us: Turmeric Garlic Cayenne Pepper Aloe Vera Cinnamon Ginkgo biloba Dong quai Feverfew Bromelain Evening primrose Melatonin Also suggested on some sites, a spoon of baking soda in glass of water. But see how you feel after a week of this. A spoon of apple cider vinegar every day. But see how you feel after a week of this.
(Pakistan)
07/04/2023
Nattokinase + Serrapeptase
★★★★★
EC: Sorry about that. Shouldn't be an issue. Please email it to us and we'll post it for you ([email protected]) and find out from our programmer why it didn't paste.
(Mi)
07/25/2013
I've been diagnosed with Polycythemia Vera (PV) at 45, which was 15 years ago, during an abdominal exam, my spleen was large. Confirmed with bone marrow test. Dr. Put me on anagrylin, now increased to 600 mg. /day. Along with 4-6 phlebotomies per year keep my counts in reasonable range, platelets and hematocrit. I am also taking Coumadin due to A fib. This helps thin the blood. All combined seem to work. I know when it's time for phlebotomie when I itch and I am a little light headed. I am surprised by the small number of comments. I heard that increased number of people diagnosed with PV were found in an area recently polluted. Looking forward to hear about others' experiences. You take care!
Potassium Bicarb
★★★★★
An alkalizing alternative to sodium bicarbonate for those with high blood pressure or on a sodium restricted diet is potassium bicarbonate.
