Tuberculosis: Hi everyone, I have just... - Lung Conditions C...

Lung Conditions Community Forum

55,234 members66,007 posts

Tuberculosis

agammyt profile image
25 Replies

Hi everyone, I have just been told I have tuberculosis! I have emphysema and bronchiectasis and this news was a bit of a shock. The TB nurse is visiting me tomorrow to guide me through the medication I will need (mainly various antibiotics) but I am still totally shocked as I thought TB had been eliminated from this country. Has anyone else had TB - if so please tell me about it - I am very concerned about the people I may have infected!

Written by
agammyt profile image
agammyt
To view profiles and participate in discussions please or .
Read more about...
25 Replies
mrsmummy profile image
mrsmummy

Hi agammyt . The BLF produce several leaflets about TB. Check them out here:

blf.org.uk/search/site/tb

agammyt profile image
agammyt in reply to mrsmummy

Thank you so much - will check them out.

newlands profile image
newlands

There is a TB clinic ar my local hospital so there must be a few people with it. Did you have it as a child ? Because I believe it can come back later in life

I had it in 1940s and do worry it will rear it’s ugly head again

Don’t worry about infecting people you maybe have a strain that doe t pass on to other people the nurse will tell you everything you need to know

Take Care

Dorothy

agammyt profile image
agammyt in reply to newlands

Thank you - I didn't have it as a child but the nurse told me that at least one third of the population is walking around harbouring the TB bug. Thank you again Dorothy.

Sillysausage234 profile image
Sillysausage234

Hi, my brother recently came back from Thailand and only by chance,on a routine medical for a teaching job in Saudi found out he had tb he got treatment and is now clear.he stayed with me when infected whilst in this country so I was tested and had a bad reaction to the skin test so was suspected of being positive for a few weeks however a blood test ruled it out,my understanding is you have to be in very close contact with someone for quite a while to pass it on according to the experts ,they do act swiftly so good luck with treatment.

agammyt profile image
agammyt in reply to Sillysausage234

Thanks Alan - The nurse who came yesterday did say that I had to be in close contact with someone for some time to pass on the infection so I feel a little happier now.

So sorry for you it must be scary. Unfortunately people are refusing vaccinations these days so there is a recrudescence of all sorts of diseases.. and we have to think about travelling..

With our weak lungs and immune systems we are more prone to catch things but TB is well taken care of at least.

brit-thoracic.org.uk/standa...

Take good care and let us know how you are getting on x

Fran

knitter profile image
knitter

The BCG or TB vaccine used to given routinely in the UK to all teenagers.....I don't know why it was stopped.

My eldest daughter was given hers when she was only a week old.....all the babies in the ward were vaccinated, forty six years ago nobody asked questions of staff.

The NHS website page gives details now of who is eligible for the BCG test and injection.

Carnival567 profile image
Carnival567

Unfortunately TB is making a comeback for various reasons including more widespread travel and migration. I am surprised that BCG has been discontinued. My son had a positive reaction but thank goodness no TB. He is now 38 and fine!

angie26 profile image
angie26

Sorry to hear that, I had TB in 2014 and I was horrified, was told it could have been there for a long time and just reared it's ugly head! having had breast cancer in 2007 my immune system they say was down!! I had an awful time getting my family tested, was told it's extremely difficult to catch!!!! so how did I get it was my answer, anyway family were tested and all was fine thankfully. I did the TB cocktail of drugs, not nice but necessary. I am left with an A typical bacterium, not TB and psdeudomonas and COPD with ongoing treatment. I hope you get well soon, do let us know how it all goes for you.

Sjf129903 profile image
Sjf129903

I have bacterial infection as well they tested me for tb but negative and all related tb bugs nothing and its still there

agammyt profile image
agammyt in reply to Sjf129903

Thank you for this Sif129903. Wish my TB test was negative. Trouble is I don't feel ill at the moment but will feel ill when I start taking the medication! Crazy!!

Sjf129903 profile image
Sjf129903 in reply to agammyt

My problem is they scrapped some bacteria out sent it to infectious disease specialist to grow in a petra dish and it wouldn't grow biopsy shows nothing but the bacteria is still there they can't treat it cause they don't know how

peege profile image
peege

My first grandchild, born in a West London hospital, was vaccinated at birth against TB.

I too wonder why the NHS stopped the routine teen vaccinations when there is so much TB around, it doesn't make sense.

Good luck in getting rid of it agammyt

agammyt profile image
agammyt in reply to peege

Thank you peege. I have just started the medication - loads of tablets which I hate taking but will persevere just to rid myself of just another big bug!!

mas7656 profile image
mas7656

One of our GPs had tb a few years back.

Take care.

agammyt profile image
agammyt in reply to mas7656

Thank you mas7656 - if the doctors can get it then I don't feel so bad. Apparently many of us can be walking around with TB and not know it.

tctelboy profile image
tctelboy

I am 75 years old now and lived in Kenya for some ten years in the 90's. I contracted TB probably in a bar! I had what was defined as 'open tb' which can be caught from a person's breath and is quite simple to catch if the person next to you has it! This meant for me that I was basically isolated at home and because I had lost so much weight I could not have injections (which were intra muscular) and had to take tablets for some six months until the open tb was no longer infectious ie closed.

Having smoked for most of my life (not for last two years) and suffering from COPD and Emphysema, my doctor, who had also had tb, informed me that the tb had permanently damaged my lungs and makes the copd worse obviously. Having said all of this, of course life goes on and we have to accomodate the difficulties these diseases produce although most people get the all clear. The only thing that I am nervous about is that I did read somewhere that tb can return if the patient is taking prednisolone, although I have not had this confirmed.

All in all, my tb experience was quite difficult with weight loss, isolation and general weakness and tiredness. It was 25 years ago now, so I'm still here, happy, positive and as I look outside at the beautiful sunshine today, I think I will go for a ride on my electric bycicle.

So agammyt, take very good care, you'll beat it for sure.

All the best

Terry

Foxy79 profile image
Foxy79 in reply to tctelboy

Hello I'm foxy79

A message to mas7656 RE Tuberculosis

I had tb in 2009 and was isolated for 2 weeks weight loss and I was a smoker know I'm on poedrisolne cause I had it for so long I'm on frequent 20mg side effects are weight gain I was 7.5 stone know I'm 13 stone I have copd respiratory type 2 asthma broncechtisis emphysema I'm on oxygen nebulizer and bipeb machine everyday with lots of tablets due to Tuberculosis I have been tested everytime I get chest infection us it tb it's not perdiesoline helps fight diseases as it has side effects like bloating weight gain take care

agammyt profile image
agammyt in reply to tctelboy

Thank you tctelboy. You certainly had it very badly but - as you say - that was 25 years ago and you are still here. I shall have to ask about prednisolone steroids as I take two a day which helps relax my bronchial tubes. I know my lungs will be further damaged by this TB but there's little I can do about that now. To date I have not lost weight and don't even feel ill so perhaps I have it very slightly!! But 0- thank you again for your information and your kind words.

agammyt profile image
agammyt in reply to tctelboy

Thank you so much. I don't think I am going to experience the problems you have had to deal with - thank goodness. Your observation about prednisolone is of interest as I do take those so will speak to the nurse about that. I appreciate your good wishes.

Foxy79 profile image
Foxy79

Hello agmmyt RE Tuberculosis

I'm very sorry to hear about it and I had it in 2009 it's a long process lots of medication around 15 tablets a day and there's a orange tablet that makes your urine goes orange don't get worried over that and you might have to go in the hospital for 2 weeks regarding if it's contegeis and get everyone tested who came in contact with you I'm sorry but this disease is still here and it's air born where people come from EU and abroad they bring it they don't get tested like other countries and lots of people don't know that they have tb until they get screened the damage of it is very seriously bad to lungs I'm still paying for it as one after another like body fluid builts up exerbation constant chest infection and that's few of them due to that my oxygen drops I'm on oxygen cylinder and when I get to much oxygen in my blood I get black out I need to use bibep machine I'm not trying to scare you or upset you in other words it's a slow killing disease only way you can maintain it I hope things work out for you 👍 if you need advice please text me foxy

agammyt profile image
agammyt in reply to Foxy79

Thanks Foxy79. Yes much of what you have told me has just been explained by the TB Nurse. Initially I have to take 7 tablets first thing each morning, before food, and a vitamin later in the day. I have also been warned about orange urine, tears etc and I will be monitored regularly and have regular blood tests to check my liver. Apparently, TB can lie dormant for years and many people carry it without knowing. At the moment we don't know if anyone, apart from my husband, will need to be tested. You have to be in close proximity with someone on a very regular basis for there to be a possible chance of infecting them.

I am sorry to hear you are on oxygen - I have that to look forward to but I hope when it happens I am as stoical as you. Thank you again

Realityrock34 profile image
Realityrock34

It may be worth asking the nurse about your condition.if you are in contact with other people you certainly haven't got tuberculosis mycobacterium which is contagious. The other type of tuberculosis often referred to as NTM exists in the soil and air. These nasty bacteria make themselves at home in damaged parts of the lungs deep down . I have a mantra for these squatters telling them to push off.!!!

Good luck!

glassflower profile image
glassflower

There is latent TB and active TB. You are not contagious with latent TB. I just watched a docco on Prime Video called 'The Forgotten Plague' which was really interesting about just how bad TB was (killing 1 in 7 ppl in US only a 100 years ago) and how the cure was found. If u have latent TB your body has isolated the bacteria and encased it with calcium that will show up as white specks on your lungs in an xray. If you get something like Aids or something that compromises immune system and get sick it may bring the TB to active stage. About 10% of ppl will develop active TB I think. Antibiotics can bring that down to 1% but course is long and a TB specialist I spoke to once said he had latent TB and had decided to not do antibiotic course which surprised me.

You may also like...

Non TB Mycobacterial infection

Hi, I have bronchiectasis and have been diagnosed with a non TB Mycobacterial infection. I start a...

Hi All, New here... Restrictive Lung issue?

recently had a spirometry which shows that I'm not suffering from asthma or copd, which I have been...

ciprofloxacin V levofloxacin

to try it and if I have a reaction to go to A&E immediately and I will have to have IV. Has anyone...

So Yet Another Follow Up - Starting I think 2020 - Bizzar,

consultant again - The MDT had been consulted and they said no to BSG - I had to go back to...

Recently diagnosed Asthma & COPD overlap…. Struggling with anxiety

this forum. I have recently been diagnosed with Asthma and COPD overlap. Came as a shock to me as...