Recent diagnosis of latent TB, looking to share...

[Bluestone36]

Hi there,

I hope all of you are keeping well,

I have recently been diagnosed with latent TB after waiting 3 years for a diagnosis. I have been referred to a TB clinic, so hope to get some advice and answer soon. At the moment though I am feeling quite overwhelmed by it.

I went travelling 4 years ago and even though TB was mentioned when I was abroad and home, I have since been mis-diagnosed twice with other respiratory infections/conditions.

I also have had concerns around talking to friends/ family/work about it and whether they might ask if i am (or have been) contagious.

Has anyone else had experience of being diagnosed with TB after such a long time? I also wondered what the advice was for Covid? And what peoples experiences of this are.

I know there are some positives here (I am so glad to feel I finally know what this could be!!), but I thought I would share my situation and see what comes back

thanks!

[hottchoc]

Hello Bluestone36 - Hearing you have been infected with TB is always a shock. it comes in two forms, latent and active (asleep or awake). When the bacteria are asleep it can do no harm to you or others, and is thought that 1/4 of the worlds population is infected with it.

Knowing you have latent TB gives you a great awareness to look for any active TB symptoms where at that point you would be highly infectious and need immediate treatment.

People live with latent TB all their lives and some decide to take antibiotics for it and some do not. If you don’t, there is a 10% chance of it waking up sometime in the future. so please don’t worry, if you are latent you are not infectious. Good luck

[Bluestone36 in reply to hottchoc]

Hi hottchoc - thank you for replying, thats useful to hear.

[Soul01]

Hotchoc summarised it really well. The main thing to consider and to discuss with the TB team is whether you want to be treated for latent TB. They will discuss it fully with you. Make sure you ask plenty of questions so you feel that you have all the information you need.

[SadieR]

Hello Bluestone36,

It’s good you have a diagnosis and you will now have choices to make which can be overwhelming.

One thing I would ask is you say about being misdiagnosed, have you had TB symptoms? Presumably you’ve had a chest X-ray once it was confirmed you had latent TB to rule out active TB. Latent TB you are not contagious, when someone has active TB they are.

I was diagnosed with latent TB in 2017 through work contact tracing. It came as a really big shock as myself and my colleague who had active TB didn't fit into any of the really high risk groups.

I decided to have the antibiotics because although the risk of it becoming active is really low at 10% I felt I just wanted to rid myself (hopefully) of this sleeping bacteria. I also felt that TB can only start to be eradicated worldwide if latent TB is treated. This is very much a personal choice though that you have to feel comfortable with so weigh up all your options.

With regards to other people’s reactions I have to look back and smile about it because it was interesting! There is a general lack of understanding around the disease. It’s very much believed that it’s a disease of the past. When I told friends and family I noticed a little step backwards from them and as I explained why I wasn’t contagious they would then relax. It’s hard work sometimes going through all the explanations but I was always open about it and never hid that I had it. It’s the only way that people will have more understanding and awareness that it is out there and anyone can get it.

With regards to COVID my understating from reading around is that if you’ve had latent TB (treated or untreated) there is not any extra risk. If you’ve had active TB and have been left with lung damage (as my colleague had) then you are in a more vulnerable position if you were to catch it so need to take extra care. There is some good information on the various TB websites.

I wish you the best in the decisions you have ahead of you, hopefully you have good support from your TB team. Take care 🌻