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Polycythemia & Lymes

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Posted 11/7/2019 10:46 PM (GMT 0)
I am a new member. As I scrolled through this forum to decide if I want to be a part of it I read a short response from a patient that has polycythemia and Lymes. I do too. His question was: Did the Lymes cause the polycythemia? That is my question also. I was diagnosed A year and a half ago with Polycythemia Vera. I have extreme itching, especially out of the shower or hot water. I mean over the top itching to where I feel like a lunatic. I finally found a Doctor Who wanted to dig deeper to find out more. I tested positive for Lymes., Bartonella , and Babesia.. all tick viruses. Anyone with experience involving any of this?? Thank you !!!
Posted 11/7/2019 11:52 PM (GMT 0)
Hi, Pamy! Welcome to the forum. I'm glad that you are here, and hope that we can be helpful.

I'm curious which tests were used to diagnose you with polycythemia. I always have slightly high hematocrit levels on CBCs, and a lot of people mention having "thick blood" due to these infections, so I wonder how many symptoms overlap and what the relationship might be between tick-borne infections and polycythemia. I hear you about the post-shower itching that is characteristic of polycythemia, but a lot of us with Lyme get that symptom because of other types of dysfunction, like for example mast cell activation syndrome.

It's great that you found a doctor who is inclined to dig deeper and has discovered these infections! Now you can treat them.

I hope that someone with polycythemia can help you evaluate the possible linkage you suspect, and that you keep us updated with what you find out!
Posted 7/12/2021 12:33 AM (GMT 0)
Hi, I thought I would add my two cents (doesn't buy much these days). I also have Polycythemia. The symptoms are a lot like Lyme. I thought they were part of Lyme until my Doctor noticed my blood was getting thicker every year. How many of us I wonder have high Hematocrit levels and or high Hemoglobin levels. Is it something that occurs with long term Lyme? I don't know the answer but find it interesting that a number of Lyme patients are concerned with high blood levels. I have read online that they can control most symptoms through Phlebotomy (blood draws) and or medication. I am new to Polycythemia, so I don't know how it goes myself, but it sounds like it can be controlled in most cases.
Posted 7/12/2021 10:26 AM (GMT 0)
i think a lot of Lyme patients have at least occasional high Haematocrit or high haemoglobin levels

these are two of my regular CBC results that can be over limit

although i think its continuously elevating over time that would be something more unusual - but i still would not be at all surprised if its associated with a Lyme disease or co-infection - especially those that infect the bone marrow where the blood cells are made - eg bacteria like bartonella, Brucella

its not inconceivable that infections there could upregulate some signalling pathway through inflammation or by products and cause odd disturbances in body chemistry.

intense itching or burring or prickling sensations in the skin are also associated with Lyme disease and co-infections - via completely different mechanisms also - often forms of neuropathies
Posted 7/12/2021 2:15 PM (GMT 0)
High hematocrit is associated with heart disease, so I wonder if a lot of folks with Lyme having high hematocrit is less about Lyme and more about how common heart disease is in the population in general. I wish we had better stats on this stuff!

Also, I usually have slightly high or borderline high hematocrit on CBCs, but my blood draws are always in the morning, when I'm less hydrated generally, which makes the hematocrit test higher than it might later in the day.
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