Polycythemia Vera Website Virtual Support Group

Vitamin E benefits: Natural anti-thrombin - circulates in the blood and prevents platelet aggregation or clots occurring inside the vessel, but does not interfere with the normal clotting process in wounds or with normal healing. In fact, it actually accelerates healing of burns and wounds. This is important not only in the treatment of heart disease, but in treating phlebitis and varicose veins caused by blood clots and venous obstructions. Tocotrienols also inhibit platelets by blocking thromboxane A2, which is exactly how aspirin works to cut the risk of heart attacks. Of course, Vitamin E does not have the possible side effects of aspirin. Sesame oil further reduces the risk of thrombi. http://www.vitasentials.com/e400toco.htm Note that I am taking 1-2 capsules of Gamma E Tocopherol/Tocotrienols.

Discount Phlebotomy - Whitney wrote: Jay excellent Question, I know of one patient where I go He has NO Insurance, So we were talking the Dr. Only charges him for the LAb< 20 bucks, and 65 to drain.. But If U do find some place that will help with out paying, please pass it on, Mayb Red cross, , Althou I know they dont clean or re use the blood, as the cells r jsut to big to clean it up jaykrienitz wrote: Anyone have any suggestions how I could keep my blood counts down and monitor them without health insurance? Thanks, Jay

Susan wrote:I was without insurance for several months and needed a phlebotomy desparately, so I started making many phone calls. The cheapest place I found was the Institute for Transfusion Medicine which is associated with the blood bank. They were only 1/4 the price of what the others charged. Try calling your local blood bank as I am sure they can direct you.

Suggestions & Links

	This page contains a collection of helpful personal experiences written by visitors and links to articles suggested by visitors.
	http://www.mpdinfo.org/faq/faq_pv.html This is the most thorough, yet understandable article covering almost all aspects of PV. A must read.
	http://groups.yahoo.com/group/polycythemia_vera/messages This is a personalized forum where we all share our ups-and-downs. Lots of great emmotional support and helpful tips from PV veterans from all over the world.

	Spivak2003 article Here is a very technical but up-to-date and comprehensive article summarizing much of the most current PV research . . .

	Green Tea Study A growing number of people with PV have found that drinking Green Tea has reduced their need for medication and visits to the phlebotomist . . ."We found they [tea drinkers] made five times more interferon after they started drinking tea compared to before drinking tea," Bukowski says. The coffee drinkers showed no enhanced production of interferon.

	http://racinnews.com/mpd.htm Please add the Harvard study, MPD Foundation and friends of ET! You can get their info off my site, the link is in my sig. Sue. This site contains information and links to: Primary polycythemia ("vera") vs Secondary polycythemia, Diagnosis and Causes - Written so YOU can read and understand it! Participating in the The Harvard MPD Study Acronyms
	Substitute Kiwi Fruit for Aspirin Besides Kiwi, purple (not white) grape juice, also works well with keeping the blood thin. For those allergic to or cannot tolerate aspirin, Ticlid can be used in its place. Best wishes to all, Susan blujeans49@yahoo.com http://www.kiwifruit.org/NewNutrition/heart.htm However, Duttaroy notes that one thing is clear from the research. Consuming kiwifruit is an effective way of inhibiting blood clotting and can improve cardiovascular risk profiles in healthy adults. Volunteers who participated in the study consumed two to three kiwifruit per day for a period of 28 days and experienced significant reductions in platelet aggregation (blood clotting) when compared to controls. This is despite the fact that volunteers maintained their regular diets during the supplement period. Further, after a two-week wash out period in which the volunteers stopped kiwifruit consumption, their blood levels returned to pre-supplement period base line.
	Home HGB Tester: Once again let me say how glad I am to have found others dealing with this weird thing we have.I have a real problem when I go into test my HGB level to see if it's time for a draining.They always have to stick me 5 or six times to get a flow and last time only got about an 1/4 in. to run the test on. Funny thing was that my level was only 15.7 and not high enough yet but was still thick as glue. I've found a home HGB Tester on the market that only takes a drop of blood to get a count and you can do it at home. Lets you get rid of some of the needles. http://www.hansonmedicalsystems.com/anemia.html

	http://www.cancer.org/docroot/CDG/content/CDG_hydroxyurea.html This is a generic description of the use and side-effects of hydroxyurea that was recommended by Nelson Kennedy, who has been taking hydroxyurea for several years now.

	Subject: Cause of PV: My year old mother has PV and has the phlebotomies, cellulitis, spleen inflamation, elevated white count, itchy skin, fatigue, thirsy all the time symptoms. Her doctor this week prescribed Hydrea to bring down her spleen which is hard and has distended her stomach a bit. I have found a mouse model in the research that associates an Adenovirus with PV that modulates EPO levels and drives red cell production. I feel that this disease is not as rare as we are led to beleive and there is some type of pathogenic component to it in humans.There is a familial association for which there may be a genetic component that could confer lack of resistance or succeptablility to pathogenic or viral infection.Another thing here is the spent phase where the blood forming cells inthe bone marrow are displaced by fibrin or scar tissue and anemiaresults. This is very similar to what happens in a granuloma where the immune system walls off infected cells with fibrin as a protecitve mechanism. There is an enzyme called serrapeptase that dissolves fibrin and may be beneficial for PV patients. We are trying that outat this time. It is also supposed to prevent or minimize fibrin induced blood clots that are a risk factor in PV. We are also looking for ways to increase both the cell mediated immune response and humoral responses that seem to be lacking. If there is aviral or intracellular pathogenic component the cell mediated immune response is not up to par and things that enhance NK cell activity might be beneficial. Additionally, cellulitis is an intercellular infection where the humoral or antibody response is lacking.I think that there is a lot more that needs to be done for people with PV form this perspective. Anyone know of any studies looking at NKcell activity in people with PV. From: Tom Brown Yahoo PV Forum Date: Sat Oct 8, 2005

	Vitamin E benefits: Natural anti-thrombin - circulates in the blood and prevents platelet aggregation or clots occurring inside the vessel, but does not interfere with the normal clotting process in wounds or with normal healing. In fact, it actually accelerates healing of burns and wounds. This is important not only in the treatment of heart disease, but in treating phlebitis and varicose veins caused by blood clots and venous obstructions. Tocotrienols also inhibit platelets by blocking thromboxane A2, which is exactly how aspirin works to cut the risk of heart attacks. Of course, Vitamin E does not have the possible side effects of aspirin. Sesame oil further reduces the risk of thrombi. http://www.vitasentials.com/e400toco.htm Note that I am taking 1-2 capsules of Gamma E Tocopherol/Tocotrienols. Discount Phlebotomy - Whitney wrote: Jay excellent Question, I know of one patient where I go He has NO Insurance, So we were talking the Dr. Only charges him for the LAb< 20 bucks, and 65 to drain.. But If U do find some place that will help with out paying, please pass it on, Mayb Red cross, , Althou I know they dont clean or re use the blood, as the cells r jsut to big to clean it up jaykrienitz wrote: Anyone have any suggestions how I could keep my blood counts down and monitor them without health insurance? Thanks, Jay Susan wrote:I was without insurance for several months and needed a phlebotomy desparately, so I started making many phone calls. The cheapest place I found was the Institute for Transfusion Medicine which is associated with the blood bank. They were only 1/4 the price of what the others charged. Try calling your local blood bank as I am sure they can direct you.