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Sufferd vague diagnosis ME to

17 Replies

Having visited my lung doctor WHERE things ended up NOT to well with regard my treatmeant care and what I term a wishey washey vauge finger up ass diagnosis.

MY own investigations re my immune issues have uncovered few point we should all be aware off ( 1 ) is immunty issues blood works doctors won't routinely check for as the say it as little clinical significants.

Well I seen my lung doctor and we was talking about stuff I was coughing up THAT they totaly dismissed LIKE we don't know when we coughing trying to get stuff up of chest such as mucus or asbestos.

Then we OR I was talking about MONOCYTES anyway he said I would not worry bout them as I have bigger issues with immunty and started talking about pneumonia.

Having had time to reflect calm down I was thinking how lame our lung dieases blood test ARE the don't do full serum blood test and the don't do antibody test nor DNA test GOSH what do GPs do THE synical of us would say nothing THAT on face of it seem accurate.

Anyway all cut right to chases THIS lots on here with a lung dieases and un-diagnosed immunty issues of unknown thingy THAT could be treated and ease your lung dieases symtoms IF only you asked and doctors gp's looked.

Thus far MONOCYTES slightly elevated in my case AND my crappy looking blood could be compounding my lung issues blood that THINGY stuff that don't flow easy AND or could it even be that CVID of unknown thingy that lung doctors gp's don't want to treat look for but only treat end result INFECTIONS

Here is interesting read Bronchitisasas Cvid

ncbi.nlm.nih.gov/pmc/articl...

And or

lungdiseasenews.com/2014/11...

youtube.com/watch?v=kCBGc0v...

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17 Replies
Sheilab123 profile image
Sheilab123

Great article Jeff. I am having immuglobulin therapy and it certainly does help. It has been a rocky ride to get there and I swear had my blood been tested years ago my Copd would not be v severe. So guys and girls get your blood tested for immunity. Have a lovely day all! Love Sheila xx

alvorite profile image
alvorite in reply to Sheilab123

Excuse my ignorance but what is "IMMUNITY??" please

Sheilab123 profile image
Sheilab123 in reply to alvorite

Hi alvorite, it means that your immune system is not working properly, therefore cannot fight infections. Hope this helps! Xx

in reply to Sheilab123

Defo agree about doctors not geting on top of symtoms defo worth a ask ESP if symptoms could be eased

Think your right tho about servertry and how we are left WHEN things could be done.

sassy59 profile image
sassy59

Hi JAS have made a note of the article for Pete when he goes to Brompton next January. He has sarc and COPD. An immunity blood test could be a good idea.

You take care and good luck to you. Keep up the fight. Xxxxx

in reply to sassy59

Think immunity test are way forward esp for those with long term lung conditions

katieoxo60 profile image
katieoxo60

Hi Jeff thats a good article about CVID, I already read the lung disease news get it by email, but thanks for link for the forum . It makes you stop and think how many of us could have some immune deficiency, or even allergies we are not aware of. Many Asthmatics are not tested for their triggers or severe allergies, the NHS works very much on "spliters" as mentioned in fact my GP practice

says one thing at a time please.Some of the newer doctors are leaning more towards being"lumpers" and looking towards the wider picture like you think should happen. Most blood tests done here are just the basics unless you have certain more serious or rare illness. Bye for now

in reply to katieoxo60

Defo agree about looking at wider picture :)

Dedalus profile image
Dedalus

Interesting - thanks Jeff

in reply to Dedalus

Glad you found interesting defo eye opener with regard infections

Nottobad profile image
Nottobad

Hi good article. I am waiting to see an immunologist. Due to low immune system

in reply to Nottobad

Am going to see my lung doc to going to ask if I have cvid then going to ask to see immunity doc

Nottobad profile image
Nottobad in reply to

Good luck Jeff I also have psoriatic arthritis. That is caused by an overactive immune system. So my respiritary consultant has referred me to see an immunologist. Due to the part of my immune system that fights infections is low. But I have been waiting for ages to be referred. And there is no guarantee that they will see me. So the consultant says.

in reply to Nottobad

Thats disgraceful the might not see ya LIKE whats that about BUT yer i have arthritis to.

Cvid causes all them nastys and guts trouble.

Hope the get you sorted propper treatment as that seems half battle esp these days of cuts reforms

So dont be to shy to stick up for your self

All the best

Beth1949 profile image
Beth1949

I have been on immuglobulin therapy for three years. My pulmonary specialist recommended that I see an immunologist and he recommended IV therapy. Every 4 weeks I go to outpatient infusion at the hospital and spend 3 hrs hooked up to an IV.

It's hard to tell if it helps or not. I could be in much worse shape if I didn't have the IV therapy?

Beth

in reply to Beth1949

Some how I don't think it's all coincidence lung disease immunity issues.

jewel8888 profile image
jewel8888

I'll be bringing this up at my appt too. Right now I haven't had these yests , no refer all, RA, psoriatic arthritis, a lung lesion and they are thinking about operating on NY lung to figure out what do do to bahe me well. Maybe I'm the experimental candidate, I'm pondering that one.

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