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Go to hospital!

I tried supplementing with both. NAC 600mg x 1 or x2 seemed to improve my HCT control. So I stayed on it. Glycine didn't help with anything. There's also some evidence that it might increase growth hormone in high doses (something to stay away from as a cancer patient). So I've been supplementing with NAC for the past 1.5 yrs but not with Glycine. Other than those, fish oil (3.2g), wobenzym and AKG are fantastic supplements. Plus, green tea and hibiscus tea. I highly recommend them. Happy to share references.

@@MrStarchild3001Thank you very much for your input. I appreciate it.

Same here! Just baby aspirin was given to me for a daily medication. There’s got to be more

The symptoms of PV are common, nonspecific symptoms. Are your Hematologists saying that you don’t have PV? Do you have a JAK2 mutation? Have you had a bone marrow biopsy? If you have PV, you could try getting an appointment at MD Anderson in Houston. That’s where the MPN specialists are in Texas.

I’ve had PV since 2018 - had the jak2 gene test which was positive for a mutation. My levels were relatively normal so I wasn’t actively treated back then. Wasn’t til a few years later when WBC, platelets and RBC were elevated then phlebotomies were suggested as first line treatment along with baby aspirin. After few yrs phlebs caused my platelets to rise even more and robbed me of iron so bad that I couldn’t function. So now I am on Besremi (ropeginterferon) I still get Phlebs but not as often which is a relief… hopefully, you are not symptomatic and your levels remain relatively low. Go to a hematologist that specializes in rare myeloprolierative neoplasms. I wish you the best.

I live in Granbury, Tx. I had my first appt with Dr David D’Spain who practices in Weatherford, Granbury & maybe FW. He suspects PV & I did my first phlebotomy just yesterday. I’m not sure where we go from here. Depending on bloodwork results, I’m confident he’ll have a great plan for me, in addition to baby aspirin & occasional phlebotomies. It will be interesting to see if I have the J2 mutation. Anyway, you might want to make an appt with him. Best of luck.

Because big pharma only wants to treat the symptoms ..never the cure..maybe just antibiotics cure ailments

My Dr tells me the same thing but how can you stop when you want all the information you can possibly get on polycythemia Vera. I worry about it all the time since my diagnosis

Polycythemia Vera is only one type of polycythemia. The polycythemia caused by testosterone is a different kind.

there are different types: there’s polycythemia Vera which is what I have where the jak2 gene mutates. There’s also secondary polycythemia which is caused by something else. Also my hemoglobin has always been normal. My WBC, platelets, and RBC have all been high. Get bloodwork done on your levels to be sure. It’s how they suspected PV with me, and when I met with my hematologist they ordered a jak 2 gene test which was positive, so there was no question in my case that I have this.