needing advice : I haven’t been well for about... - MPN Voice

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needing advice

Plath1982 profile image
11 Replies

I haven’t been well for about three years now, and have suffered from fatigue since my early thirties. Just lately I have noticed that my feet keep turning red, I feel very breathless without an exertion, have heart palpitations, headaches with ringing in my ears, and lots of gastric issues. Just recently I had an endoscopy that revealed portal hypertension. After an abdominal CT scan they said there were no problems with my organs but the vein remains wide. During the scope they found h pylori, so I will take the medication after the bank holiday weekend. I have noticed on my most recent bloods that my red blood count is 5.04 and it has been higher previously. I’m not sure if this is significant? I realise that h pylori can cause lots of issues, but didn’t know whether to ask about my bloods too?

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Plath1982 profile image
Plath1982
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11 Replies
Luthorville profile image
Luthorville

I’m sorry that you don’t feel well. Do you have ET, PV? Anything else? It is hard to offer anything that may help. Are you on any medications for them?

Plath1982 profile image
Plath1982 in reply to Luthorville

I haven’t been referred to anyone yet. I have recently got private medical insurance, so I’m hoping the GP I see tomorrow helps me more than my local practice. Thank you though

Lyndjs profile image
Lyndjs

Sorry to hear you're feeling unwell. I have PV and many of the symptoms,you've mentioned,are similar to mine. Just wondering if you have an MPN? May be worth getting checked out. My was found in a blood test and I have also had a bmb.

Keep us updated please.

I hope you feel better soon and can enjoy the Easter bank holiday 🐣

X

Plath1982 profile image
Plath1982 in reply to Lyndjs

I’m going to use my private medical insurance to go forward. Sadly, I have little faith in own GP. I will look to move after the BH weekend.

Lyndjs profile image
Lyndjs in reply to Plath1982

Good thinking. I'd mention your symptoms and how they are similar to those experienced by others with a MPNs. Hopefully you'll soon find out the cause of all your symptoms 🤞

I'll be thinking of you

Keep us posted plz x

BlastedKnees profile image
BlastedKnees

Regarding H Pylori, typically that is a bacteria treated with an antibiotic. This should clear it and will help remove one problem so the doctor can work through your other symptoms. Sometimes H Pylori can be a recurring condition or is difficult to clear with antibiotics. I highly recommend using mastic gum. It’s a gum that comes from a particular tree in one of the Greek islands. They’ve used it for centuries to clear up gastrointestinal issues by chewing the gum, and use the powdered form in some food recipes for flavor. Clinical trials have shown that it is effective in helping kill H Pylori (one study found it cleared over 30% of patients within 2 weeks) and also for helping the gastrointestinal tract to repair ulcers and other inflammatory conditions, promote a healthy microbiome, etc.

My wife is Greek and introduced me to this when I had acid reflux. I took the capsule form (easily found on Amazon) but you can also buy the gum and chew it. It cleared everything and I continue to use it when I have any gastrointestinal issues such as reflux. It’s safe and has no known side effects aside from slight constipation in some people.

For the other symptoms continue to work with your doctor and update us on what they find. Bedt wishes!

Plath1982 profile image
Plath1982 in reply to BlastedKnees

Thanks for this suggestion. I’m also taking Manuka honey, so hopefully that will help too.

Rem31 profile image
Rem31 in reply to Plath1982

I’m off on a tangent here… in the UK there’s possible fraud around manuka honey and other imported honey. Speaking as a beekeeper my suggestion is to get in touch with your local beekeeping association and buy local honey direct from them. They will know it’s provenance. It’s my understanding that all genuine honey has antibacterial properties.

which.co.uk/news/article/uk...

theguardian.com/environment...

Plath1982 profile image
Plath1982 in reply to Rem31

Thank you. I will look into this.

Mostew profile image
Mostew

I flourish take antibiotics it’s good to take probiotics during and afterwards.

Optibac do good ones and have great helpline

I spoke to a herbalist who has practiced for 40 years when I had H plyori.

She didn’t hesitate to say take antibiotics as it’s verY stubborn! and gave supporting herbs

I had been very reluctant but listened to her . Glad I did

Hope you feel better soon

Plath1982 profile image
Plath1982 in reply to Mostew

Thank you. I will have a look at the above now.

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