I have JAK2 ET and MPN: Anyone else have these symptoms?

Posted by jak2mpnpositive @jak2mpnpositive, Mar 1, 2022

Hi all,
I've suffered for many years with this MPN disorder, but it seems not many others have the same symptoms, so I'l posting this to see if anyone else has similar symptoms.
First of all, it's important to note that I had lyme disease undiagnosed for 4 years. Right around the time I started to experience symptoms from Lyme disease, my platelets shot up. With that said, I am certain that this is when the JAK2 was triggered. However, it took my another 9 years to be diagnosed with JAK2, ET MPN. My platelets are currently around 890. I am 40 years old. With a recent pregnancy, my platelets went down into normal range and I felt AMAZING!
Symptoms that I experience: Very red (almost purple) feet when sitting too long. This is not comfortable.
Upon sitting too long at a desk, typically in front of a computer, if it's consistent for several weeks, I start to feel as though I am going to die. There is no other way to explain it. It's as if my blood is stagnet. It's VERY uncomfortable. The only way for me to feel better is with exercise and continued movement.
I've had a hematologist tell me my symptoms aren't related to my MPN and I've had one tell me they are. It's very frustrating.
Does anyone else have any similar symptoms?
Thank you.

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janemc | @janemc | Jan 31 6:37am

In reply to @toste "@janemc thanks for responding, his last platelets were 577, but feeling good except for getting tired...." + (show)

@toste

Every aspirin is helping his blood flow freely! Keep up the good work.

I wish there were an equally effective pill for the fatigue.

Your husband is so lucky to have you. Please don't forget to take care of yourself, too.

jammy17 | @jammy17 | 2 days ago

In reply to @lag630 "My husband had Lymes and Erlichiosis (another tick-borne disease) 12-15 years ago. In 2021 he was..." + (show)

@lag630
Hi I had Lyme disease about 20 years ago and was then diagnosed with primary myelofibrosis about 12 years ago. Now I have leg weakness and irregular heartbeat. I believe this is all connected but can’t get any answers from doctors. I used to be very fit running ultra marathons now I struggle to walk

jammy17 | @jammy17 | 2 days ago

I also have high platelets

Lori, Volunteer Mentor | @loribmt | 1 day ago

In reply to @jammy17 "@lag630 Hi I had Lyme disease about 20 years ago and was then diagnosed with primary..." + (show)

Welcome to Mayo Connect, @jammy17. While there is no definitive proof yet, there are studies underway that have led to a possible correlation of Lyme's disease and some blood cancers, especially CLL (Chronic lymphocytic lymphoma). While Lyme disease itself does not directly cause cancer, chronic inflammation associated with it may elevate cancer risk. So perhaps down the road there will be more discoveries on how this tiny bug can wreak so much havoc to our body in causing other blood cancers such as myelofibrosis. (MF)

Twenty years ago there wasn't much information on Lyme disease. Were you able to be treated right away with Doxycycline or did it take a while for your doctors to diagnose the Lyme's disease?
Are you in a treatment program for your MF?

maine | @maine | 1 day ago

In reply to @loribmt "Welcome to Mayo Connect, @jammy17. While there is no definitive proof yet, there are studies underway..." + (show)

@loribmt
Lyme three times, now PV. Interesting to hear this possible link. Who is researching? Where?

Lori, Volunteer Mentor | @loribmt | 22 hours ago

In reply to @maine "@loribmt Lyme three times, now PV. Interesting to hear this possible link. Who is researching? Where?" + (show)

Hi @maine There have been numerous studies by researchers over the past decades of longterm side effects of Lyme disease. You can do an online search by typing in questions such as "Is there a link between Lyme disease and Cancer". You'll bring up a list of articles.

At this time, research results suggests Lyme disease does not directly cause cancer. However, chronic underlying inflammation, a potential consequence of untreated or persistent Lyme disease, is a known risk factor for various cancers including lymphoma.

Here's a smattering of some of the articles online. While I'm not advocating them as credible sources there is information of the possibility of correlation.

~Lyme Disease And Blood Cancer: A Startling Connection Revealed In New Study (tickbootcamp.com)
https://tickbootcamp.com/lyme-disease-and-blood-cancer-a-startling-connection-revealed-in-new-study/
~Does Lyme disease cause cancer. (advancestudy.org)
https://advancestudy.org/does-lyme-disease-cause-cancer/
~Can Lyme disease cause leukemia (medicalnewstoday.com)
https://www.medicalnewstoday.com/articles/can-lyme-disease-cause-leukemia
From what I'm reading, there's been no direct link with PV (polycythemia vera) or other myeloproliferative neoplasm disorders. There are many other random factors that can impact our bone marrow causing a misfire in DNA that can eventually lead a blood caner or chronic condition. You may never know the cause of your JAK2 mutation but I thought the point that @jammy17 brought up about Lyme disease and their MF diagnosis was interesting. So that's why I did a little sleuthing.

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