Was wondering if anybody with ET has had success with naturopathic help

Hi folks. Been on here a while, but never posted. Got diagnosed with Essential Thrombocytosis back in Nov 2017, and put on 1000mg of Hydroxyurea per day. At the time my platelet numbers were up over 1700, and WBC was 18. After a month, my dosage got increased to 1500mg per day, since my numbers came down, but not enough, in the eyes of my hematologist.

Five months later, my WBC is down to normal (8), but my platelet count is 742. Been dealing with extreme / crippling fatigue, but from the sounds of it, it looks like a lot of people on here are dealing with that. It's nice to know it wasn't just in my head.

I guess my question was, if anybody has had success with any sort of naturopathic help, or dietary changes, in this battle.

Thanks for your responses. Nice to know I'm not alone.

[Mardi]

How much hydrea are you taking? I’m on 10 x 500 mg a week - doing well - dr might need to increase hydrea for you - I’m 74 dx four years ago. Platelets a bit under 400 last time. I have Pv and the haematocrit ( % of blood cells in the blood) needs to be under 42 for women and 45 for men.

[Hidden in reply to Mardi]

He started me off with 14x500mg a week, and then increased it after a month, to 21x500mg per week when the platelet count didn't come down as much as he'd hoped.

[katiewalsh]

Hi Jerry, I am fortunate my fatigue isn’t crippling or extreme & I tend to shy away from naturopathic treatment. But there’s been great success by many here from changing to a really healthy diet-no processed foods, etc. I assume you’re drinking at least 2 liters of caffeine free beverages? Katie

[Hidden in reply to katiewalsh]

I've been trying to drink 3 liters of water per day, as recommend by the hematologist. I did go see a naturopathic doctor, and he put me on a Mediterranean type diet, along with therapeutic fasting. I guess we'll see what the results will be. Next blood test is this coming week.

[Mazcd Partner MPNVoice in reply to Hidden]

Hi Jerry , have you checked with your haematologist about the therapeutic fasting, just to make sure it is ok for you to be doing it. Maz

[Garden987 in reply to Mazcd]

HEalthUnlocked. HI Maz. This isn't strictly and totally about ET but am having trouble with HealthUnlocked re password. NOt sure I'm still a member. Have been trying for hours re resetting password but not getting anywhere. Had note saying my blogs had been refused! Sorry to trouble you but can't think of anyone else to ask for help. Suggestions please? Love. MAry

[Mazcd Partner MPNVoice in reply to Garden987]

Hi Mary, I am not sure what is happening, but you have been able to put this question on so something is obviously still working for you, also not sure why you are getting a refused note, I have not blocked you or restricted you at all from the site, I will put through a help request to the admin team for you, they will be in touch. Love Maz x x

[Garden987 in reply to Mazcd]

MPN VOice. Maz, thank you so much. Have been having a breakdown with this machine today (most days in fact!) and couldn't access keyboard or understand what the replies meant! Still not sure about my password but will stop screaming now. Hope things are well with you. I k ow you hadn't deleted me! Mary. XXXX

[mbr8076 in reply to Hidden]

How do you therapeutically fast? And,?why because of toxins from Hydrea?

[Tinkerbell13]

Hi JerrySK, been having Turmeric capsules for a while, which helps with general health re ET, and now having Pomegranate juice (no sugar involved), which, have been assured by friend, has reduced her platelets, but she also said 'need to have 100 ml a day over months, before see real results'. Am always interested in hearing of alternatives to the chemo drugs. Best wishes to you. Tinkerbell

[Hidden in reply to Tinkerbell13]

Thanks. I've heard good things about Turmeric, so I've been trying to add it into my diet whenever possible.

[Tinkerbell13]

Think important to use actual root or a good capsule, as opposed to powder, as told that isn't strong enough....every good wish, Tinkerbell

[Searcher56]

Hello Jerry,

I have been thinking of visiting a functional medicine practitioner, it is going to be very expensive but I am trying out different avenues first, like heavy metal detoxing.

Searcher56

[BloodZero]

Yes and No. I made changes such as eliminating sugar and junk food from my diet. Minimising gluten and dairy. Drinking lots of water. Minimum 2lt a day. Exercise within my limits in addition to regular walking. And rest when i need to. But dont over rest.

No it hasnt helped my blood counts but yes it has helped my quality of life. Im less fatigued. Less muscle and bone pain. Very few headaches. Better sleep and better moods.

[hunter5582]

If you have thrombocytosis + leukocytosis I would be wondering about Polycythemia Vera. What do your erythrocytes look like? It does not sound like you are having an adequate response to the HU. If you are JAK2 positive, I woyld wonder about Jakafi. Maybe peg-interferon as well. Unfortunately lots of docs, even hematologists, don't know much about MPNs. If you have more than one vllod cell type elevated I would get diagnostoxs straightened out to figure out the meds.

Regarding the alternative medicine question, I have never heard of any viable "natural" alternatives for reducing hematapoisis. If you are having trouble with secondary symptoms related to inflammarion (note link to JAK2+) then Turmeric-curcumin works really well for me.

Hope you get it all straightened out. All the best