A funky blood picture...

[Uzza]

Hi, I am Uzza, just diagnosed with JAK2 after ten years or more of increasing symptomology.

[Mazcd Partner MPNVoice]

Hi Uzza and welcome to our forum, what a lovely photo. How are you feeling now you have your diagnosis? Kind regards, Maz

[Uzza in reply to Mazcd]

Cheers, I am glad you like our photo. I am trying to grapple with what the Dx means for me, and how to manage Jak2 complications together with Heart Failure. I have a leaky mitral valve which has been repaired but still leaks. The valve ejection is about 78% which allows me to function reasonably being well maintained by a great deal of Rx, I might add. But there you go!

[Pippa63]

Lovely happy pic of you both. Hope you find this forum as supportive and friendly as I do

[Uzza in reply to Pippa63]

Thank-you, I am sure we will.

[mhos61]

Welcome Uzza. Which MPN do you have?

Lovely cheery photo by the way!

[Uzza in reply to mhos61]

Hi mhos61

Essential thrombocythaemia (ET)...but I have high Erythrocytes, Eosinophils, Basophils as well. I have not yet received the promised letter from my haemotologist outlining diagnosis and prognosis as yet. I am currently prescribed Aspirin and Hydroxyurea along with a host of meds for stage one heart failure secondary to childhood Rheumatic Fever. I have had chronic gout for the last ten years or so. But, my biggest bugbears now are fatigue, hands/feet, and gut issues. I am described in terms of 'complicated management'.

[Anag in reply to Uzza]

Hi Uzza and welcome to our group! I’m in Austria, have ET CALR and was diagnosed after my 3rd lightbstroke, 7.5 years into my illness. My doctor (a great friend and Uni Prof.) didn’t want to believe there was anything wrong, even when my thrombos were at 750!!! That’s why you don’t go to doctor friends. They see too much or too little. They are not objective.

Regarding you condition, I understand the rheumatic fever heart prob (my cousin has the same). For gout and General well being, it is important to remove anything causing stress to the organism. The first thing I did was remove all GMOs, pesticides, food additives, glutens and milk products from my diet. I buy nothing processed. Prepare everything like in the olden days. Within 6 months, this got rid of my fatty and sluggish liver, cholesterine problem, incontinence, histamine intolerance, swollen/achy joints, dizziness, eczema, brain fog, massive bloating, stiffness, hair loss, etc. This is really a huge change, but diet should be taken seriously. Best when the partner and family are on board. The change will take a month or two to organize. It’s worth it!!!

The next thing I did (a year later) was to remove all chemical cleaning agents and cosmetics from my house and get up to 80% organic foods. The healing for us all continued. I believe with all my heart that if all these stressors are slowly removed, almost every single symptom we have will reduce itself. I even reduced my meds. I look at my body as a bucket and every time there is an environmental assault on my body, the bucket starts to fill drop by drop. Eventually it overflows and that when we have illnesses. We need to slowly empty the bucket and allow our body to recover. That will take some year to reset. I’m convinced I’ve added years to my life expectancy. And those years are better ones. I now feel better at 54 than at 42!

If this is all interesting to you, find a really good holistic doctor in Australia, there are lots of them; one that will work with your other doctors and find a plan to strengthen you from within.

I love your picture and your energy and love for life that really comes through in your writing. That is so important! Glad to have you here and tryout Australian buddies will also be great for you! Once again welcome and wishing you lots great years ahead. Anag

[kbodh in reply to Anag]

Hi Anag ,

You mentioned about using holistic doctor to strengthen within. Do you think alternative therapies will help? It will be great if you could explain it a bit.

[Anag in reply to kbodh]

Hi Knochen, For me, alternative is the western medicine. All other treatments have been around for 1000s of years and many work better. I don’t take full aspirin. I take 50mg 3x/wk. on top of that, I take 60mg Ginkgo 3x/day. When my doctor increased my aspirin to 7x/wk, because my platelets we up, I had a horrific, life threatening nose bleed. I stopped both aspirin and Ginkgo immediately. The Ginkgo was out of my system within 12 hours. Aspirin needs 7 days! Yes, it is safer.

Also for headaches, period pain, Ischias, tooth ache, whatever, I take Turmeric. 3-5mg in hot rice milk, with a few drops of oil and a pinch of pepper. Works fast, lasts and there are no other side effects as with pain killers, which do a job on your gut (Center if our health) and brain and stomach. It also reduces inflammation and is know to kill cancer cells.

We need to have our chemo or emergency meds! They put out an uncontrollable fires in ya. but there is so much we can do on the side to strengthen ourselves!! And to counteract what the chemo is doing. Ex. My Anagrelid is bad for my collagen in my body, therefore, I simmer organic beef bones for 24 hours. Make 3 Liters of soup and drink a cup daily to get the collagen, magnesium, zinc, and all other vitamins in there. It’s a dream. I also look younger. 🙂

I also drink nettle tea for a month and then one month off. I make it with 60 C water and leave it overnight to get maximum effect. It equals out the ph in the body and help with digestion. I drink lemon in my water before meals to get my digestive juices going. All this helps my body.

A holistic doctor who is good will look at you and your personal make up and needs. We are all different. He/she will bring you in balance and you will become generally healthier and have more energy and live better. There are also TCM doctors and some love Ayurveda. These doctors know a lot. Western medicine and the Pharma industry try to disrepute them, since they can’t patent food or natural herbs and therapies because they didn’t invent them.

I get rid of warts, Candida and colds by taking or using oregano essential oils. I cream my skin with coconut oil and a drop of lavender essential oil or others. We don’t need chemicals. We only need them to get sick.

This is my deepest belief outside of God. Hoped to have helped! 🙂 Anag

[Uzza in reply to Anag]

Cheers Anag, thanks for that!

[hunter5582 in reply to Uzza]

I would ask the doc about PV vs ET with those kind of numbers. Regarding the other complicating issues (I have lots of those too) some may be related to the JAK2+-MPN and some unrelated. It is worth learning about the role of JAK2 in increased inflammatory cytokines (and all the issues they cause) and the importance of what your JAK2 mutant Allele burden is. Here are a few resources.

Here is one reference about the JAK2 Mutant Allele burden. bloodjournal.org/content/13....

Here is a reference to the role of inflammatory cytokines in MPNs ncbi.nlm.nih.gov/pmc/articl... .

There is a lot more out there on these topics. Takes a bit of effort to find the information - but knowledge is power and worth the effort. Hope this helps.

[Uzza in reply to hunter5582]

Cheers for that, valuable info to know!

[Uzza in reply to mhos61]

P.S. I glad you like my photo, I thought it most appropriate to include my team-mate.

Cheers,

Uz

[mhos61]

That sounds like a complex picture, hope you receive the haematologist report soon. It is tough when there are other comorbities to consider too. Great that you have a team mate.

Also, I noticed that you live in Australia. There is an MPN forum just set up there with the help of one of our Australian contributors (Steve from Sydney). The link is below.

Good luck

Mary

mpn-mate.com/

[Uzza in reply to mhos61]

Cheers for that!

[Cja1956]

Welcome to the forum! I was diagnosed with ET Jak2 + 11 years ago. It morphed to .PV about 3 years ago. There’s not much more info I can share that others haven’t said. Just get a good hematologist. The disease affects everyone in different ways

but fatigue seems to affect everyone. Sometimes it’s hard to tell if it’s the meds or the disease. I wish you all the best.

[Uzza in reply to Cja1956]

Cheers Cja 1956.