Supplements: Seen a lot of posts by people with... - MPN Voice

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Supplements

Handysmurf profile image
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Seen a lot of posts by people with all kinds of side effects from this disease so I just thought I’d put this out here in case someone can benefit from it - wondering if anyone else out there has come across the People’s Chemist? It’s operated by medical chemist Shane Ellison M.S. who formerly worked for Big Pharma, then saw the light and switched to making natural supplements and is fanatical about quality control and ensuring his products are pure.

As for me I was diagnosed in April 2020 - ET CALR Type 1 - asymptomatic - platelets 717 at last count - I am lucky for now in so much as I do not need to take any prescription medication or aspirin.

I am of the strong belief that aspirin doesn’t do a damn thing other than cause internal bleeding - although I am aware of those who would disagree.

In large part I attribute keeping aches and pains to a minimum by taking Joint Fx from the People’s chemist along with Daily Dose which contains turmeric.

I take other supplements and hope to stay off intensive drugs for as long as I safely can, although I have yet to find a natural cure for high platelets.

I have also found a TENS device to be very helpful - particularly when I was partially incapacitated at the beginning of this year with trapped nerves, pneumonia (although I did not discover this till early April) and high platelet count.

A transcutaneous electrical nerve stimulation (TENS) unit is a battery-operated device that some people use to treat pain.

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Handysmurf
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Mostew profile image
Mostew

Looked up people’s chemist it came up with NHS as I’m in uk ! . the American one looks good

Always pleased to hear from people using natural stuff . Even if we do eventually need to take meds we can hopefully lessen symptoms with supplements .

I’m still trying to lower platelets naturally . Goes down then up then down ( just when I think I’ll need to start Hydroxy .. ) !

EmeraldA profile image
EmeraldA in reply toMostew

Hi Mostew, I hope you dont mind me asking what supplements are you taking to try and lower platelets? I take a range of supplements. The one I am taking at the moment to try and lower platelets is Q10 200mg. Thanks B

Mostew profile image
Mostew in reply toEmeraldA

It’s good to share ideas

I saw a functional practitioner who specialises in cancer

He has made up a support mix with;

Yarrow. Milk vetch. Milk thistle ,white cedar , ginger

Also , CBD 10. Curcumin liquid

Trouble is it’s all so expensive . Can’t keep it up for to long

Don’t know if you saw this a few weeks ago ?

A Case of Essential Thrombocythemia and Tubercular Miasm

By molly Caliger

Worth a read

I’m waiting for next blood test then maybe seeing a homeopath

It will certainly be cheaper form of supplements ! And I prefer homeopathy

Let me know what you think

X

EmeraldA profile image
EmeraldA in reply toMostew

Hi did read that and found it very interesting! It is expensive I do agree. I take Q10, ginger root, curcumin, magnesium,vit C, apple cider vinegar, super Canosine, boron and oil of oregano. I also try and drink 3 ltrs of water, intermittent fast m, no sugar, eat as clean as I can with mostly a med. diet and run. x

EmeraldA profile image
EmeraldA in reply toEmeraldA

I should have said I also have a nutritionist to help me work out what I need. I am in the early stages with this.

Mostew profile image
Mostew in reply toEmeraldA

Yes best to get proper support and advice . Easy to take things that don’t mix well otherwise.

How do you do the fasting? I’d like to try but the things I am taking need to be had before food or after!

Sounds like you are taking good stuff

I take vit c and d and forgot to say reishi mushroom powder... Ridiculous amount of stuff !! Xx

EmeraldA profile image
EmeraldA in reply toMostew

I see your point about how fasting might be problematic. I do the easiest fasting possible. I dont have anything after my dinner. Until lunchtime the next day. I allow myself black coffee and water in the morning and I take my asprin at lunchtime too. I take my supplements in the evening after dinner. :)

MaggieSylvie profile image
MaggieSylvie in reply toEmeraldA

I do something similar with good results losing weight, only I take it further - up to the evening meal, so it's a 24-hr fast, with green tea. I'm not sure any of the supplements I take help with this condition and there are too many of them.

hunter5582 profile image
hunter5582

TENS units are great for some types of pain relief.

I have taken a bioavailable form of curcumin for years now to deal with osteoarthritis. It works better than any NSAID I ever took. I have not taken nor needed a NSAID on over four years.

After assessment by an Integrative Medicine doc, I also take: L-Glutathione and SPM Active (fish oil derivative) for systemic inflammation; Vit D, Vit B/Folate, Magnesium supplements for nutritional deficiencies.

I which there was a "natural" cure for thombocytosis; however, I believe that if something is biologically active enough to help you then it can also hurt you - whether it is "natural" or not. Many natural substances are toxic. Some of the drugs used to treat MPNs, such as hydroxyurea, are "highly toxic." Each of out choices come with risks and benefits, including doing nothing. I think you are wise to seek less toxic options for as long as you can. For myself, I am hydroxyurea intolerant, so when it is time to resume meds to treat my PV (likely soon) - I will likely opt for PEGylated Interferon. It is not without its own risks, but definitely prefer immunotherapy to a toxin-based approach.

All the best to you.

Igreyhound profile image
Igreyhound

I did get a bleeding ulcer from the daily aspirin

I was taking for my PV Jak2 positive..

I have numbness in feet and hands.. hence nerve damage- electrical stimulation does help

Will check out the Joint fx

Handysmurf profile image
Handysmurf in reply toIgreyhound

Igreyhound - Joint FX is magic stuff - I take two capsules daily both at the same time - but if I am having joint issues that particular day I'll double up with two in the morning and two in the evening. Joint FX also cures gout.

Handysmurf profile image
Handysmurf in reply toIgreyhound

Shane Ellison isn't everyone's cup of tea - he's pretty straight talking and doesn't give a damn about offending people with colorful language - but he make good products and cuts through a lot of the lies put out by big pharma. Don't let his attitude put you off.

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