Coming to an end of the TB treatment... advice needed...

[Bluestone36]

Hi, I hope you are all keeping well!

I was diagnosed with Pulmonary TB back in August 2020 and I am now coming to an end of the 6 months treatment of antibiotics (in Feb 2021). It looks like I may have contracted active TB as far back as 4 years ago when i was traveling in Asia. I was told last year that my immune system was so 'good' that it seems to have 'masked' the TB, and luckily I haven't passed it on to my family. I just wondered if anyone has had experience of such a long diagnosis of TB like this? I live in the UK and feel very surprised it's taken this long to diagnose TB.

I was very ill when I was in Vietnam (4 years ago) I had to fly home as I had a persistent cough, pneumonia on the lungs and a plural effusion/pleurisy but they never tested me for TB back then as they said I was not showing the 'normal' symptoms for TB. At one point I was tested for Legionaries Disease and it came back positive but then negative which is apparently why i was never tested for TB.

I also have scarring on my lungs and a growth which the consultants called a granuloma. I was hoping this would go away after the TB treatment, but my CT scans don't seem to be getting better...has any one else experienced this? or a granuloma/scarring post TB?

It's been a very confusing few years, and I have been feeling quite alone with it (as I am sure many others do with TB). I am so glad to be coming to an end of my treatment (and my cough has gone!), but I wonder what the effect on my lungs will be/and my body from having untreated TB for this long. I also wondered if i have post viral fatigue/or CFS/ME, as i still suffer a lot of tiredness (however know the antibiotics aren't helping with this either!)

Any advice on how others have been 'post TB' treatment would be so useful to hear from you...!

I hope all of you are continuing to keep well and positive during these times!

[dino10]

Hi there. First of all congratulations on the last month of TB meds. I was also diagnosed in August. For the scars, My doctor mentioned that some scars dont go away but they do not effect our abilities in any way. I too have scarring.

One question to you would be, I also dont have cough but do you sometimes get phlegm .. I just experience it sometimes but even then no cough. Recently I got blackish yellow phlegm which makes me wonder what it was.

Anyways keep me posted

[Bluestone36 in reply to dino10]

Thank you for this response, even though hard to hear of others struggling, nice to be able to relate to people too, i hope you are getting better and feeling stronger, best wishes Jemma

[HelenC Partner TB Alert]

Hi Bluestone36,

Congratulations on getting so close to the finish line with your TB treatment - you're on the last stretch now.

I am sorry to hear that you still feel tired, though this is not uncommon. Once the TB bacteria are gone from your body it can still take time to rebuild your strength and shake off any last side effects from the medication. Make sure to get the rest you need, eat well and build up exercise gradually.

Best wishes,

Helen

[Bluestone36 in reply to HelenC]

Thank you for this Helen, i am now finished and slowly getting there, but on the mend, thanks for your kind words, Jemma

[HelenC Partner TB Alert]

Glad to help.