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

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?

Good morning I have the CALR mutation. I think I'm going too try the IV Antibiotics with the Hyperbaric chamber any thoughts on the Hyperbaric chamber. I also think Stress plays into this, yes my Integrative medicine Dr thinks that might of flipped the Switch for me the Lyme Disease Cancer Dr says nothing, my wife passed away from Acute Myeloid Leukemia with a FLT3 gene in 2020, so I question a lot of things.

Welcome, @hudson2019. You’re certainly having your share of medical drama the past couple of years. Lyme disease can cause huge variety of issues in the body so I’m happy to see that your doctor is taking this seriously. Lyme disease is finally getting recognition and treatments are more forthcoming.
It appears the HU is helping reduce your platelet level as anticipated. I hope you continue to improve and that the Lyme Disease treatments are successful for you. Did your doctor feel there was any correlation between the elevated platelets and Lyme or is the ET due to a genetic mutation such as the JAK2 gene?

Hi I was Diagnosed with ET in Jan 24im on Hu 1000mg day I also was Diagnosed with Lyme Disease in May 23platelets over million than platelets now 665been treated For Lyme Disease oral Antibiotics for two months Lyme still there Dr Suggests intervenous Antibiotics with Hyperbaric Chamber 6wks. I have no Symptoms of either Disease but trying too get platelets Down and the Lyme Disease too.

I too have found that heavy exercise really helps. I returned two weeks ago from an 9-day wilderness backpacking trip with four long days (10-, 11-, 12-, and 13-miles) of hiking between camps, and feel completely restored. I'm sleeping better and can work through the afternoon fatigue with an occasional short nap and by going out and tackling gardening chores in our southern heat and humidity. I've been on hydroxyurea intermittently for 18 months, finally getting platelets down to 469,000 taking 500mg daily.

Ive been diagnosed with PV one of the MPN'S and I could tell something was wrong because my cell numbers were increasing over time and was told dehydration several times..Finally the numbers went over normal so I made an appointment with a hematologist..He knew without the Jak2 it was PV but did the Jak2 which was positive. My problem with this hematologist is when I asked questions if he didn't like it he'd say "don't ask questions like that" well that was the last visit with this guy. I'm with another Hematologist at another facility who wanted their own Jak2, bone marrow and lab work and who has made me a partner in my care. I wouldn't think twice about changing hematologist's if your not getting answers..Your symptoms sound troubling to me. I'm 76 you're a young mother, please consider getting into the weeds and find out what's going on....I'm from the medical profession and know how to navigate the system, they don't intimidate me....Don't except what you know is not right. Your inate self is almost always right. Good luck.....

My experience was a bit similar. The primary care provider poo-pooed my symptoms to fibromyalgia or depression. He offered me a prescription for antidepressants. I got up, walked out the door, and found a new doctor. He was probably doing the best he could with the knowledge he possessed, but I knew my body was screaming for help. Let’s take a minute out of our day to spread the word with thoughtful conversations.

Thanks so much for your input. I do find antihistamines help. Like you I don’t bathe every day. I’m 75 and plan to live along time with this nuisance diagnosis.

Jerkin and everyone else, good morning,

Once in a while I do have some itching which I ignore, no scratching ever and no over the counter meds for this symptom. One thing I found that helped, well maybe a couple; I don't ever take a bath, I don't shower everyday instead I use a sponge bath and don't use anything on my skin with alcohol in it...In other words, if you use cream on your skin watch the ingredients..Other than my face I use aquaphor (advanced therapy ) it's thick but it truly works for me. when I had breast cancer they suggested I use it after radiation...So I went to it for my skin to avoid the itching before it starts. I use this for everything other than my face which I use cepaphil cream my dermatologist suggested it. I drink a good 90 oz of water each day which hydrates from the inside. and thins the blood both it's very effective. I stopped feeling sorry for myself and accepted my "new normal" as someone suggested on this site, it works..Trust me when I say I get this is difficult but manageable and we're going to live a long time with watchful care,,There are many out there much, much worse off then we are,,Hope some of this helps, don't be a stranger..We may have an orphan blood cancer but this site offers us a support system and I'm grateful for it.

I was really surprised to find out that my primary doctor, dermatologist , ENT, eye doctor all knew quite a lot about the disease. I actually see 2 Hemotologist, oncologist as I live 6 months in Florida and 6 in Wisconsin. They both agree on my treatment. New normal is right. Do you ever have itching. ?