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

Blood Cancers & Disorders | Last Active: Jul 14 12:00pm | Replies (71)
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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @hudson2019 The use of hyperberic chamber treatments for Lyme’s diseases is gaining recognition. I live in an area of high instances of the scourage and have heard positive comments from the treatment. Instead of typing out what I know, I found a good article for you with all the information.
https://www.nationalhyperbaric.com/hbot-treatments-and-conditions/lyme-disease
I’m just happy you found a doctor who takes Lyme’s disease seriously. If you try the therapy, please report back on your progress!

I’m so sorry to hear that your wife passed from AML with FLT3 mutation. I had the same leukemia in 2019 and it was an incredibly challenging ordeal, including a bone marrow transplant. Despite efforts by both patient and supporting oncologists, AML-FLT3 can be a difficult disease to treat. I’m very sorry for your loss.
So you’ve been having to face your new health issues flying solo. Do you have a support system nearby with family and friends?

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Replies to "Hi @hudson2019 The use of hyperberic chamber treatments for Lyme’s diseases is gaining recognition. I live..."
cathy8 | @cathy8 | Jul 13 10:43am

Hi just a quick update on my treatment, I was diagnosed with two mutt Jak2 and Calr , apparently to have one is ok but two is very unusual...my platelets were over 700 and haemoglobin dropped to 8 mg. Fatigue was the worst aspect. I was on Hydrea for some months with no real affect, I also had 3 transfusions to help the anaemia. Subsequently I've been taken off the Hydrea and now inject weekly with interferon 150 ml and once every three weeks with Aranesp 300 ml, the platelets have started to come down and the haemoglobin has come up from 8 to 10.4. it's still early days and the chronic fatigue is still there but at least the bone marrow is functioning a little better...hope this is of help or of interest..my final diagnosis was MPN ET

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