Non Tuberculous Mycobacteria.

[Janlyn1953]

Hi.

Anyone out there had this awful infection?

if so please share your experience with me.

I've been I'll for months and dont seem to be getting better.

I

[heatt]

Hi Janlyn1953 sorry to hear you are not feeling good. Our stories are all different, some very very long and others shorter, some stay on meds and some stop them, some never start them. Are you on the big 3 medications and do you have a good specialist

[angie26]

Hi Janlyn, I had Bacterium Avium and was just about to go on the drugs when my consultant first did another bronchoscopy and found it had gone? he asked me what I had been doing differently, apart from small changes in diet and excercise nothing! I have to say I didn't feel that unwell with it, however, 2014 I did contract TB and had to go on the drugs , not nice!! We are all different in how we feel and how we react to different drugs, I'm one of those that don't tolerate them well. I hope you get something to help and you feel better soon XX

[Armadillo57]

Hello

Yes I’ve had it. I bet your frightened, nobody has heard of it, your Gp doesn’t understand it, your losing weight, am I right?

It was shocking it took 23 months to get rid off. Several changes to meds’ as it is clever and already lives in your white cells so you have to keep alternating one of the meds. They give you three - four tablets known as chemotherapy antibiotics. I looked at them and was scared. I was told which do you prefer this one can potentially damage your optical nerve the other the liver or ear? I replied am I going to die the consultant said No I’m going to cure you but it will take time and it did. I was so tired.

Youve got to stick it out even on bad days - stick it out. Even now I have to send samples in as they can’t say it will never return. The meds left me with tinnitus and they found I had no immunity so I’m now on the programme for immunoglobulin replacement therapy.

Stay strong follow their advice let it run its course cos there is nothing you can do except take the meds. You will pick up I promise you that but it affects your mind cos your so Ill scared and nowhere to run except your consultant as my gps said it was to complex, they had been a Gp for whatever many years and never come across it, others asked me to right it down.

That’s gives you so much confidence- not.

Do they know the source it’s either picked up from soil, cigarette papers. Aerosol water or you have breathed it in and it has stayed. That is what I was told.

How far into it are you.

I really understand how you feel and I sand you all the support I can x

[santisuk in reply to Armadillo57]

Great post - the kind I would be looking for if I contracted something a bit scary!

[Patches2]

There is an excellent US site Inspire.com which has an enormous amount of posts on MAI which you should find very helpful.

Good luck with the medication.

[Ortho10]

Hi Janlyn

I have the same health issues as yourself, and one of my samples has just identified the same Non Tuberculous Mycobacteria.

I'm due to have a CT next week, I'm keen to know how your situation has played out.

Kind Regards.

[Janlyn1953 in reply to Ortho10]

Hi.

I just keep having chest infections.

I'm allergic to mould, so this attacks my lungs, and stays on them causing chest infection.

Not a lot they can do, I'm limited to medication.

So just take the Antibiotics when an infection comes on.

I do keep myself as active, as I can walking my dog etc.