After effects of TB and the antibiotic treatment

[Bluestone36]

Hello all,

I hope you are all keeping well,

I finished my 6 months worth of antibiotics for Pulmonary TB back in February 2021, however since then i am still dealing with chronic fatigue, feelings of nausea and sickness and just generally feeling 'unwell'. I have officially been diagnosed with CFS/ME now, which helps to explain it all a little bit, a CFS nurse even told me i had 'Long tail TB' which i thought was an interesting response!

Since leaving the TB clinic I have had no support on the lasting effects of having had TB/ or the antibiotic treatment.

When i talk to my respiratory consultant about the symptoms i am still experiencing, i basically get a shrug of the shoulders, as if they have never heard of anyone experiencing long term effects of TB/ and the treatment , i just wondered if anyone else still feels or felt ill after they were treated? I also have chest pains from scarring, but have now been referred to a pain clinic.

I am just struggling with the fact there is no support for people with lasting effects from TB, and it seems to be relatively brushed under the carpet or maybe just not researched enough, any comments or hearing others stories would be so helpful,

take care all

jemst0ne!

[hottchoc]

I feel for your frustrations. I think anyone who has suffered TB is given the brush off and sadly told to move on, however it’s not as simple as that, just like Covid you can continue to suffer long after treatment has finished and support should not be begged for. I’m not really sure our medical profession truly understand. A true ‘cure’ can only be reached if both patient and doctor work together, the ending of medication does not mean the ending of treatment.

We still need a supporting role, you only need to look on here to know we have all been failed in that. But please don’t keep your worries to yourself, this forum needs to help each and every one of us no matter how small, so please don’t feel alone, and do ask for help from your team x

[Bluestone36 in reply to hottchoc]

Thank you for this message, even though it's hard to hear about others struggling, you are right that having this community is good to share and know that we are not alone with it. It's just a shame it's sort of so hard to get the support, and that there is still some much stigma around TB. I have found it so hard to talk to friends and family, but of course, as so many of them don't even realise it still exists!Thank you again and i will make sure to checking in here, and keep being a part of this community, thanks and take care x

[Soul01]

In the UK there seems to be little understanding of post-TB issues. Research is being carried out in some countries but I am frustrated that doctors seem disinterested. Once TB medication is finished, all problems disappear.

My biggest challenge has been fatigue. It has improved over time but still hits me sometimes. This includes physical fatigue and mental fatigue. There is a great deal of sympathy for people with long COVID but little understanding of post-TB difficulties.

[HelenC Partner TB Alert]

Hi Bluestone36, I'm sorry to hear you are still struggling. Hopefully your symptoms will resolve in time as you get fitter and stronger. Try to eat well, rest as much as you need and build up exercise. Best wishes,

Helen