Treatment support app: If you are on treatment for... - TB Alert

TB Alert
733 members263 posts

Treatment support app


If you are on treatment for TB, remember that your TB Nurse is there to support you every step of the way. If you have trouble with side effects, remembering to take your tablets or the emotional aspects of TB please let your TB Nurse know. If you would like additional support, you may also like to download the useful MyTherapy app (free for Android and iOS). The award-winning app sends daily reminders for medicines and appointments; includes a diary function to monitor your symptoms and side effects, helping you report back to your TB nurse; and includes a team function to allow family and friends to remind you to take your medicine.

14 Replies

Helen who can answer any questions I have on possible TB in UK I had interning gama test 4 years ago Wich was positive the infection whent on its own now everything has come back stronger and started in my ankle then spread to knee then hand and throat I have no chest problems but I can't seem to get tested again

HelenCAdministrator in reply to minka

Hi Minka,

I can provide general advice and support about TB, though I am not a qualified doctor so I cannot give specific medical advice. Even if I were a doctor, it is difficult to give advice without having a full medical history. You should speak to your GP or seek a second opinion if you do not feel you are getting the support you need.

That said, I will try and help a little. What are your current symptoms and why can't you get a test?

Best wishes,


minka in reply to HelenC

well helen i have had this thing for 4 times now wher i cant walk cos knees swell up and ankle hurts and little nodules appear on my hands on the dips and pips dont hurt but can get inflamed.

this all started back in april when i got ankle pain then it spred to my knee with hot and cold feet and swetting in bed waking me up wet through with swet bed all wet with it Then the feet started to get hot red hot on both feet if i tried to walk like somthing was inside my feet with tingling sensations.

kept feeling cold through the day like my thermostat had gone wrong in my body

Then my gums started to receed in my mouth needed to have 2 teeth out whent bad and i had had before this started teeth splitting.

Some time ago 4 years to be precise i had this but not as bad and i cleared off completly I had no chest infection but they did a gama infernon test on me and it showed possitive But as i was starting to get much better they said they would leave it alone as the pills had big side effects but this is not the sort of trait that tb does but it could be that i was infected with latent tb


The doctor dosnt want to give me the test i dont know why but this thing feels like it is eating away at the bone off me The more i try to push the more i have problems my walking distance has gone right down since april. And i have shown them the letter if i was on immune suppresents like predisone and this poped up again i would need a further test because it could have come back on again My bloods have had the normal screening but they say nothing showing inflamatory markes calcium etc. just like last time

many thanks for the help but what i thought wa just an inside ankle sprain has moved on and i knew it as soon as i saw the fingers dips and pips markers.

HelenCAdministrator in reply to minka

Hi Minka,

As I say, I can't provide medical advice as I am not a doctor. It does sound like you have a complex set of symptoms that do require medical insight - though they may or may not relate to TB.

It is always worth seeking a second opinion if you are unhappy with a doctor's decision or simply need further explanation or reassurance that their advice is correct. You are welcome to approach another GP in your own surgery or a different practice.

I'm sorry I cannot offer specific advice but I hope this helps.

Best wishes,


minka in reply to HelenC

Thanks Helen if I new a place near to Warrington I would go and pay for the test myself if you know of anyone let me know thanks.

HelenCAdministrator in reply to minka

I wouldn't recommend seeking out a test without a doctor's referral. As I say, your symptoms do sound complex and distressing - but they may not be connected to TB or even to each other, only a doctor can tell you that. Please persevere with your GP and seek a second opinion if you are unsure or are not getting the support you feel you need.

Best wishes,


link to toes problem

How are you getting on? I am having the same problem with noone prepared to properly test me and not able to arrange my own tests without a doctor's referral. The doctors have the monopoly on you. You can't take samples on your own anyway which is needed if it is extrapulmonary TB. I was treated for TB then put on biologics and developed TB symptoms again but noone is prepared to help you with testing. They just say it is very unlikely and leave it at that.

There is no such thing as a second opinion as no doctor is going to say the first doctor missed a diagnosis of TB. That would have too many public health implications. I have found that out the hard way.Neither are they going to admit the drugs they gave you caused you to get ill.

Unless there is a policy not to treat TB second time around?

Has anyone had problems caused by the TB treatment itself. They say just a short course of antibiotics destroys all the good bacteria in your gut. I did not think of any side-effects like that when I took 6 months of TB drugs but that must have severely compromised my gut function. I think I was prescibed some B vitamins alongside the drugs but I just didn't think of the damage the drugs were doing. I have loads of gut problems now.

Has anyone any experence of peripheral nerve damage due to TB? I have symptoms now which tie in with nerve damage and I read some research somewhere that said 50% of recovered TB patients have peripheral nerve damage. My GP won't refer me for testing though.

HelenCAdministrator in reply to Sammy2

Hi Sammy2,

Please, can I reassure you that no doctor would refuse to test you for TB unless they are confident that you do not have TB, and a second doctor would not agree with the first doctor just to save them from embarrassment. Also, TB would always be treated no matter if it was the first, second or even third time that someone fell ill.

TB is a life-threatening condition and is also a public health risk. All doctors would take it very seriously to prevent harm in their own patient and the risk of TB being passed to others.

Whilst we do come across cases where TB is diagnosed late, this is most often because no-one has thought to test for TB rather than because TB has been discounted.

I do not mean to discourage you from getting help for your symptoms. If you have troubling symptoms you have every right to get a diagnosis and the treatment that you need. However, to pursue an avenue that has been repeatedly discounted by qualified medical professionals is unlikely to get you the right answers.

I hope you do get the help you need.

Best wishes,


Chelsea68 in reply to HelenC

That is just not true! I had tb 3 years ago, and after the treatment had finished the symptoms returned very rapidly..I became very ill but was told it wasn't possible for it to return..I was told by the specialist that I was paranoid, and was treated very badly at a very well known top London chest clinic..I begged them to investigate but to no avail. It has taken a year of me barely able to function, including it affecting my brain..before it has been diagnosed. The tb nurses here are pointless. It's not great here in the heart of the

HelenCAdministrator in reply to Chelsea68

Hi Chelsea68,

If you read my post again you will see that I have not said that doctors can't be wrong, which is why it is always worth seeking a second opinion - or even a third. I explained that a doctor would not refuse to diagnose or treat TB if they believed it was the problem. Also, a second doctor would not protect the first doctor from embarrassment if they disagreed with the initial diagnosis - they would certainly seek a diagnosis and treatment if they suspected TB.

Whilst it is true that doctors can be wrong, it is also true that people can misdiagnose their own symptoms and worry unnecessarily - particularly without the benefit of years of medical training. This is why I urged Sammy2 and Minka to be open to all possible explanations for their symptoms and to continue to pursue a correct diagnosis and treatment whatever that may be.

I am sorry that you have had such a bad experience. TB can return if it was not treated properly the first time, or if doses were missed. It is also possible to develop TB a second time if you breathe in TB bacteria again. What form of TB did you have the first time and what have you been diagnosed with this time, it sounds like they may be different forms of TB? And what medication are you on? I am happy to provide advice and support if needed.

best wishes,


Hi helen mam

I am 17

I am brain tb patient

I am on ATT since July 2016

But cold pain in legs n head still continue

Does that mean progression in my brain lesions?

Will I ever have relief from headaches n cold pain

Will my brain lesions ever get resolved?

For how long does cns tb requires treatment?

HelenCAdministrator in reply to rina-roy

Hi Rina-Roy,

I have just replied to your other post but now see that I may have been confused. Are you still on treatment? I am not a doctor so I can't provide specific medical advice. If your TB treatment is working then your TB symptoms should get better, but the medication itself can make you feel very ill. Either way, a doctor should be able to provide advice and possibly medication to help.

Best wishes,


rina-roy in reply to HelenC

Yes I am still undergoing treatment. Ill see my doctor this week .

Thanq for the information helen mam.

Thanq so much for the reply on all my posts

You may also like...