When I was diagnosed with an MPN in 2020, at age 67, I had been extremely healthy all my life (no hospitalizations for anything except childbirth). I also was on no medications. Interestingly enough the only health issue I had was a very serious stomach virus a couple of years before I was diagnosed. It turns out I had Hpylori. It was actually picked up at the same time as my MPN was diagnosed even though I had symptoms for a couple yrs. So the thought is could a virus such as this in any way affect the development of an MPN? Worthy of consideration I would think, especially since no one seems to know the origins of MPN.
I personally think It would be very worthwhile if the medical community would develop a comprehensive questionnaire for patients when someone presents with a rare disease to see if there are any commonalities between patients.

I'm 63 and have had Epstein Barr for 34 yrs.since age 30. Back then Dr's had no clue what EB was. The onset was severe flu and symptoms such as severe fatigue, low grade fever and sore throat, all that lasted for years. Dr's thought I was a hypochondriac or something.
Finally somewhere in my 40s I had a blood test confirming EB that was dormant in my system. At least there was a real reason for my years of suffering and symptoms. I got diagnosed with ET April 2023 and my platelet graph shows platelets began rising in 2018 . I only got diagnosed because I noticed my platelets rising and not my Dr.
My oncologist wanted to start me immediately on HU as my platelets were at around 465. I refused because being in the range I was and being physically fit I though I would take a wait and see approach. It's been 2 and a half yrs and my platelets have stayed between 450 and 508. At last test I was at 487. I'm keeping my fingers crossed and will stay off HU long as possible cause it's poison. Just my opinion. Please follow what your Dr says cause every one is different. In the mean time I eat right and exercise 5 days a week.
Good luck everyone.

From what I could read, one possible explanation is that MPNs make our bodies more vulnerable to infections, so maybe we are more vulnerable to getting infected with H.pylori too.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC77...

In some places in the world, H.pylori infects up to 80% of the population, yet very few get symptoms. Different strains are more or less likely to give symptoms or result in gastric lesions or malignancy.

There are some speculations that since H.pylori is capable of inducing alterations in the stomach lining that can lead in some people to malignancy, and as it can impact the immune system, that it can be linked to other manifestations outside the stomach, such as thrombocytosis or autoimmune thrombocythopenia. But I could not find any study showing cause and effect, just an asterisk that people with chronic blood cancers were far more likely to be infected with H.pylori. That could even be due to the fact that MPN patients are more likely to get infected generally, and due to MPNs, we are also more likely to have symptoms if infected, so we have a higher likelihood of being detected.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC41...

Given that no one in my immediate family got infected with H.pylori, for me this infection obviously happened during adulthood and it was brutal. Most likely, my hereditary thrombocytosis made me more susceptible to get infected and to have symptoms. I do not think H.pylori caused my essential thrombocythemia, as the mutation that causes my ET is inherited and I had signs of ET since I can remember. My dad didn't have H.pylori and still had an MPN.

"The higher susceptibility of H. pylori infection and high frequency of gastric lesions in patients with MPD suggests a surveillance of these patients. The eradication of H. pylori to avoid probable gastrointestinal problems is advised in MPD patients."
https://pubmed.ncbi.nlm.nih.gov/15711666/

"As the susceptibility of HP infections in PV patients are higher, it is recommended to have close surveillance of these patients by screening HP presence."
https://asclepiusopen.com/clinical-research-in-...

What I could find is that H.pylori is very capable of causing transient hematological issues, but they resolve upon eradication of the infection, so it seems not to cause permanent hematological issues:
https://www.sciencedirect.com/science/article/p...

As H.pylori is brutal on immunity and the body generally, it makes MPN symptoms more brutal too. At least I felt it did that for me. And as the MPN symptoms are becoming more cumbersome, we go to the doctor and we get these diagnoses.

But I agree that studies should explore what exactly makes us so much more susceptible to H.pylori infections, what makes us more susceptible to having lesions when infected, and whether having been infected with these bacteria influences the evolution of our illness.

Risk of infections in patients with myeloproliferative neoplasms – a population-based cohort study of 8 363 patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7738400/

Hematologic manifestations of Helicobacter pylori infection

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4177465/

Gastrointestinal lesions and Helicobacter pylori in patients with myeloproliferative disorders - PubMed

https://pubmed.ncbi.nlm.nih.gov/15711666/

@A myMPNteam Member Hi Mark, interesting what you said but makes sense. The MD Anderson Dr. said Pegasys and Besremi are what should be used bc they shrink allele burden and sometimes actually remove it, can actually remove the MPN mutation in some ppl, some ppl take temporarily, some always, and some only a small maintenance dose.

He did also say it’s unfortunate many Hematologists and MPN Dr’s still prescribe toxic HU and other type drugs as they are not fit for human consumption.

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A myMPNte...

Makes sense. Bc Epstein Barr virus is said to be linked to many ppl with MPNs.