Any Success With Natural Treatments for Essential Thrombocythemia?

Hello
Your the same age I was when I was diagnosed with the Jak2 mutation, basically the exact same mutation for the Myeloproliferative Blood disorder. My understanding is it is a stem cell disease , the mutation is in the bone marrow cells. I am 70 now. I don't believe there's anything to correct the mutation and the result is thick blood, Essential Thrombocythemia hemorrhage. Normal CBC is under 400 and very serious is over 800 and more like 1000. The disease was probably acquired meaning you were born with it and it just became symptomatic. Mine was caught at a annual physical and my CBC show me at 900. I was put on Hydroxyurea and aspirin and referred to a Hematologist. I didn't want to take the medication either and I argued with the doctor. It made me very ill in the beginning. Now it's like nothing. I'm 70, and don't look a day over 45. I feel great. I do get my bouts and have to be hospitalized for a week about once every three years, now it's about twice a year. The thick blood can put a lot of stress on the heart while it's pumping harder to get the needed oxygen to your brain meaning your at high risk for heart attack or stroke. infarction-
It is definitely not good to not take the medicine. Now! if you find something natural to bring down your platlet count while taking the medication, the doctor will lower your dose or take you. off the med and keep you on the asprin or something like plavix.
Now, things that might be good for you, oxygen, anti inflammatory foods, berries, blood cleaners, but take that medication until you find something that lower the platelet count. Your life is depending on it. I was told distilled water will pull the residue of the chemo out of the body. beware, steroids will make my platelet count increase. bless you, bye.

After I was diagnosed with AML, which is a very serious illness with a five-year survival rate of maybe 20%, I briefly toyed with the idea of "helping" my doctor by doing my own research in the hopes that I might find something better than what he was recommending. It quickly became clear to me that while there was a lot of information in the form of research reports and academic papers, I would need a PhD or MD myself in order to interpret them. Treatment for AML can't wait five years while someone gets an advanced degree in order to understand the medical literature.

I decided that I would be best served by trusting the knowledge and experience of my doctors. After all, my doctor went to college, then medical school, then residency training. Some of my doctors have both an MD and a PhD. In addition, my doctors also consult other experts in the field when they have a difficult case. I did not think that anything I could come up with by myself would be better than that. I have found that a good survival tactic is to do what your doctor wants you to do.

It is worth noting that your condition will not stand still while you conduct amateur experiments on yourself with "natural" products. If ET means Essential Thrombocythemia, it looks like you have a fairly good chance of living a long time if you get treatment. I would not throw away that opportunity.

You say that you have done some reading, but you do not say where you are finding the reading material. If it is something you found on the Internet, then please be aware that the quality of information that you can access via the Internet, or find via a search engine, depends a whole lot on the source of the information. The nature of the Internet is such that anyone can create a webpage that says anything, for any reason. There should be no expectation that what you read via the Internet is true unless you know something about the source of the information.

If you have any questions or concerns about treatments, talk to your doctor.

I have given a lot of thought to where my friends and relatives could find relevant and true health information, and I have put together the list of sources below.

If you still decide that you are not going to take the medication that your doctor wants you to take (because he or she wants to give you your best chances of survival), then the best advice I can give you is to get your affairs in order.

Here are some sources of medical information that I trust.

General Information
National Library of Medicine: medlineplus.gov/healthtopics.html
For general information about a condition, use Google to search for: NIH condition-name patient education
or
condition-name patient education site:*.gov
https://www.mayoclinic.org and then select Health Library, or
https://www.mayoclinic.org/diseases-conditions
https://my.clevelandclinic.org/health/diseases

Specialized Information
https://pubmed.ncbi.nlm.nih.gov/
https://www.uptodate.com/contents/table-of-contents/patient-information/beyond-the-basics or
https://www.uptodate.com/contents/table-of-contents/patient-education
NIH produces consensus statements about many medical conditions.
Google: NIH expert consensus document condition-name

Treatment
https://www.cancer.gov/research/infrastructure/cancer-centers

If you like reading about your condition, see: https://www.nature.com/articles/s41408-017-0041-8
Among other things, the conclusion talks about the importance of getting an accurate diagnosis.

Hi Lisa,
None of us like taking meds, and yes, there are side effects to everything. I'm 71 and have had ET w/JAK2 less than a year. My heme doc has taken a lot of continuing ed on alternatives - there is not much out there, but new research is coming out every day.

Have you talked to a pharmacist? They are more knowledgeable about drugs than the Dr's are! At least then you'd know more of what to expect. What works for one of us does not work for all.

A lot depends on what stage you are in, what your overall health is like, and if your docs are open to alternative ideas. My primary is a functional medicine doc, and he sent me to the heme doc he works with when my platelets hit 481. So, right off the bat, I think I have more options. I've been as high as 580, but now back in the mid-400's. My regiment includes 81mg baby aspirin daily, monthly high-dose Vit-C IV's (25 grams + nutrition), quarterly IV chelation and a boat-load of supplements. All this is paid out-of-pocket. My blood is now tested every-other month (was monthly) and my heme doc says I will avoid HU as long as I stay below 600. That's the benchmark he has set for me. I walk daily, take a core stability class w/weights and am otherwise quite healthy. I keep all my appts as scheduled and take the supplements as he recommends.

There is no way of knowing the future. I'm not familiar with MPL EXON 10, but JAK2 is also a mutation. It may stay the way it is, or become something more. It's really important that you are comfortable with your heme doc. My heme doc is a member of the MPN network. You can search online - they sent me a lot of good info.

It's vitally important to get your platelet count headed where it needs to be. You can request an appt w/Mayo Clinic. Maybe they can recommend someone familiar with alternative treatments and find if there is something that might work for you.

Best wishes on your journey 🙂
UPDATE: My doc's office just called and changed me from chelation to a different type of IV, all based on my blood work. This is why you really can't be an island and try to solve it on your own. If your heme doc doesn't know enough about alternatives, look for a different heme doc. Maybe you'll have options, maybe not. I'd start w/Mayo Clinic if I were you.

My husband had high platelets, and had a severe stroke in September 2021. He was told platelets are "sticky" and too many formed a clot. He had a brain stem stroke. He is now taking baby aspirin, and hydroxyurea. Please rethink.

How high were his platelets when he had the stroke? And was he taking the aspririn when he had the stroke?

Can you tell me what supplements you are taking to lower your platelets? Obviously, what you're doing is working well for you

I hope you continue to do well.

Thank you for your reply and for all of the reading material.

There is a lot of bad info out there about ET. I think it's because many doctors are not up to date on treatments and dosing of meds, and many patients are frustrated and wasting money on unproven cures.

As a long-time ET patient with a family history of ET, I'd like to see:

1. More emphasis on wellness. ET patients should all be eating heart healthy diets that help reduce overall clot risks. ET patients should quit smoking. ET patients should be shooting for exercise to maintain good circulation.

2. More access to proven treatments. Pegylated interferons and ruxolitinib are currently too expensive for too many patients, and they are still off-label for ET despite being approved for PV and MF.

3. More info for doctors, and more info for patients FROM doctors. Doctors gripe about patients reading about ET on Google, but they don't understand that when they don't address symptoms or stay current on treatment options and techniques that patents get scared, frustrated, and turn to quack medicine that cranks up fears and lies about conventional options.