Newly diagnosed TB don't know what to do

Hello everyone. I just joined today.

My dad had a positive TB result confirmed 2 weeks ago. In the mean time we have not been contacted by the TB team. I phoned our GP for advice and he rang back to say the hospital were still analysing to see which strain it was and that was why they hadn't been in touch.

Now I'm left floundering at home with a very ill 82 year old dad who is down to just over 7 stone and unable to face more than a few mouthfuls of food a day. He feels TERRIBLE. So I'll and just fading away before my eyes. He's already a copd sufferer for about 10 years so quite weakened and I'm worried he'll not have any strength left to endure the treatment for TB. From what I've read online it really is grim.

I'm also wondering about how much of a risk there is to my mum ( sleeps in same bed ) or to me ( his carer ) And is it safe to have visitors? I've even read that dogs can catch TB from people. We have a small dog. She likes to snooze on dad's lap and sometimes licks his hands. I really hope she doesn't get sick but then I don't want to deny poor dad the comfort of his wee 4 legged friend as she really cheers him up.

I wish I knew what to do.

Any advice please?

11 Replies

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  • Hi there,

    First, let me say that I am SO sorry that you and your family are going through this. One of the worst stages of any illness is the "not knowing" stage.

    I am a 30ish year old woman and I had TB last year. So, I might be able to address some of your questions. However, I am not a medical doctor, so keep that in mind.

    First, just to be sure, was your father diagnosed with ACTIVE TB (rather than "latent TB")? Active would be when the infection is actually in the lungs. When you have active TB, you are contagious. If you just have latent TB, it means the bacteria is in your system, but is thus far "contained" and not causing damage (you are also not infectious). Not sure if anyone described this to you or not.

    So, to answer some of your questions (again, as a TB-patient w/ a good knowledge of the disease, but NOT as a medical professional):

    If your father has active TB, he is infectious. TB is actually pretty difficult to spread, in contrast to the common cold. If you have high ceilings and a well ventilated home, for example, the disease will spread less than if you lived in a very small space.

    Here's what I will say--it wouldn't hurt for you and your mother to both wear masks (just regular hospital masks) when you are around your dad. He could wear a mask too--but, given his discomfort, it might be okay if just you and your mom wear masks.

    Technically, until you have been on antibiotics for at least 4 days you are still infectious (although, to be safe, doctors usually quarantine people for 2 weeks). The 4 days rule was something a nurse told me like it was a "secret"--so maybe take it with a grain of salt.

    So, during my two week quarantine, anyone who came into my house had to wear a mask. I had to wear a mask to the doctor's--and I wasn't allowed to go anywhere else.

    I would strongly suggest that your mother wear a mask--assuming she is elderly like your father. That means she is much more susceptible to both initial infection and onset of the disease. It's probably fine that she is at home with your dad--but she really should be masked. You should also keep windows open as much as possible.

    You and your mother should also be tested for TB as soon as possible. PARTICULARLY your mother. The reason I say this is: IF your father has already infected your mother, she might only have "latent tb" (same for you). Again, this means that there is bacteria in your system, but it hasn't progressed to disease. (TB only progresses to "active" disease in 10% of people who are infected). If you or your mother have latent TB, you can both be treated for it before it does any damage to your body (i.e. becomes active). For you, assuming you are relatively young/healthy, the risk of it becoming active would be rather low (though I am young--I got active disease--probably because I was underweight and a smoker, which compromised my immunity). For your mother, however, if she has been exposed to the germ, and is any way in poor health (or just elderly), her immune system is probably weaker. If she DOES have latent TB, you can get that treated much more easily than if she has active TB--and there will be no harm to her lungs.

    So if your father has active TB (and not latent): use masks, open windows, limit visitors (they should use masks too). Also: make sure both you and your mother get tested.

    Please don't let the above freak you out. It stinks to have latent TB--but it is VERY treatable.

    Let me know whether you would like to know more about the testing process, etc. I imagine you are in the UK? So things might be different there than the US. But, I imagine some protocols probably overlap. In the US, they do an infection investigation and test your contacts.

    I wouldn't worry too much about your dog (but I am SO not an expert on that!!).

    TB can be transmitted from humans to pets. Like with human-to-human transmission, the disease can ONLY be transmitted through inhalation of microbes from a person's lungs (so, you have to cough pretty close to a person's face to give them TB--same with a dog). So yes, there is a risk--but it's pretty rare. If it were my dad, and the dog was a comfort to him, given what I know, I would accept the tiny risk.

    Lastly, they probably haven't contacted you yet about treatment because, as you said, they're checking the strain.

    This can be tricky, because "strain" could potentially mean "latent" or "active"--or in its correct usage, it would refer to the degree of drug susceptibility, i.e. TB is typically treated with four different drugs--but, if your strain is not susceptible to one or more, that will alter treatment protocol. In some cases, doctors don't want to start you on ANY drugs until they know what you are susceptible to--because you could develop additional resistance if you are not on the right cocktail.

    It doesn't sound like your doctors or the TB clinic have given you good information at all. You are very right to be frustrated. Let me know if you have any follow-up questions about what I've told you, or additional questions. If you'd also like advice on questions to ask your doctors, let me know.

    Like I said, I'm not a doctor, but, I am a scientific researcher (in neuro/cognitive development) and so I read a lot of research while I had TB.

    I'm here to help if you need me. I know TB is a very lonely illness and it can be VERY hard to find resources and/or other people with TB experiences.

    All the best to you and your family,

    MSJS

    P.S. Just so you know, as you consider masking, etc--my husband did not catch TB from me, despite me exposing him for more than a year to the disease (before I knew I had it).

    I also coughed on my beloved cats--and they have shown no sign of the disease.

    But, again, I STRONGLY urge your mom to wear a mask and get tested. And to keep those windows open.

  • Thanks so much for replying to my post so quickly and with so much good information. I really have been feeling helpless and adrift so it's really nice to hear from someone who understands.

    I'm thinking dads TB must be active as his symptoms are so severe. He had TB as a young man so maybe it's a reactivated bug from back then.

    I mostly worry about him wasting away while they assess the strain. He really is eating next to nothing and is just hanging by a thread.

    I also started him on co-trimoxazole last week from his copd emergency supply but now I wish I hadn't. It's a hard drug to tolerate and you need to take it with food and plenty of fluid. So Dad is taking it in a dangerous way that I'm also terrified will kill him before the TB team ever get round to seeing him. I don't think he can just stop the co-trimoxazole because then you create resistance by leaving its job only half done. Doctors always stress how you MUST complete courses of antibiotics. It's all so scary.

    Luckily I work at the hospital as a volunteer on Tuesdays on the ward where dad gets treated so I can talk to his nurses and maybe get them to prod the TB people a bit for me. I'm just hanging on hour by hour until then and hoping dad can last out til Tuesday and that I come home with some solid news and the prospect of help at last.

    Thanks for listening and I'm so glad you're well and your husband didn't get sick. You're an inspiration,

    All the best,

    Claire

  • Hi Claire,

    Do you know how your father was diagnosed this time? Blood test, skin test, sputum future, or x-ray? (or some combination)?

  • oops I should have said "sputum culture" NOT "sputum future"

  • That's these predictive keyboards for you! Mine is always stubbornly mistyping words on my behalf!

    We had to submit a course of 3 sputum samples spaced at least a week apart. TB was already suspected though based on his weight loss.

    I managed to get our GP to agree to come for a home visit tomorrow (or he may even come today if he has time) Thats taken the edge off the terrible worry a little bit today. He'll be able to answer the co-trimoxazole dilemma and maybe chase up the TB people. Even if they don't know the strain yet it can't be too soon to test mum and me or to give us some general TB advice.

    Here's hoping!

  • Great! I really hope you get some answers soon. From my experience, it can be very difficult to get answers at certain stages--particularly during diagnosis--b/c doctors/practitioners only want to tell you things when they are certain.

    If he was diagnosed from sputum, that means he has active TB.

    On another note: I kind of regretted writing yesterday that your mother shouldn't sleep in the same bed with him and that you should limit visitors. If your mother wears a mask while she sleeps with him, she should be okay. And same with visitors--if they are masked, they are okay. Particularly if you leave the windows open. This is NOT a medical opinion. Really, I am saying this because you have expressed worry that he might not hold on for much longer--for me, the minimal risk of contracting the disease would be an acceptable risk if this is the case. I feel awful saying this (I really hope your dad is going to be okay!). But I woke up this morning thinking that I had basically advised you to deprive him of some comforts.

    Again, this is not a medical opinion, just a "human" one. I had some concern for your mother if she is elderly, but I do think there are ways to manage these risks.

    And remember that TB is only passed through VERY close contact with a person who has the disease if they are coughing, speaking, etc. Like I said before, I coughed all over my husband for MONTHS before I knew I had TB and he was never infected.

  • Thanks so much. I've learned more from you than from any medics concerned.

    Yes Mum is elderly (86 in May) so her health definitely does need protecting.

    We're very lucky that we have a spare room right next to main bedroom so mum and dad can sleep apart but next door.

    I'll ask at the hospital tomorrow about masks. I'm praying we can avoid them though ( dad would be mortified) We'll all just have to avoid getting too close to dads face and hopefully be able to sit in the same room and watch tv or chat without having a mask on. But if we have to if course we will.

    My brother came for a visit yesterday and just was vigilant not to get into the 'cough zone'. He's not comfortable with bringing his children around though until he hears from a doctor that it's safe. He set up Skype on dads computer so that dad can still have face to face chats with his grandchildren even if just onscreen.

    So we're trying to make the best of things and keep hoping.

    You really have helped me calm down and face this whole thing. Thank you for taking the time to write to me. You're a very kind person. I really hope your health stays good after your own battle with TB. Thanks again,

    Claire

  • Hello iviviv,

    I am sorry to hear about your Dad's illness and your concerns about how that may impact others. I am glad that MSJS has been able to give you some excellent advice and support already.

    Do you have any further information from the TB specialists yet? It is normal to start someone on treatment for suspected TB even before the tests results come back. This is because treatment quickly limits the damage that TB can do and the risk that it can be passed to others. MSJS is correct that just two weeks treatment is enough to stop TB from being infectious. I wonder if the specialists are concerned that your Father has drug-resistant TB, particularly as he has been treated for it in the past, which is why they are delaying? I'm afraid I can only speculate myself as I am not a doctor. Please persist in pressing the TB specialists for answers and getting your GP's support to do so.

    With regards to risks to your Mum and dog. If you Father has TB in his lungs then they are at risk or breathing in TB bacteria. The best things that can be done to protect them in the short term is to limit the amount of time they spend with your Dad in an enclosed space, to ensure good ventilation in the home, and to ensure your Dad covers any coughs and sneezes. A mask is certainly a good suggestion. A strong immune system is the best defence against TB - as people with strong immunity can get rid of any TB bacteria in their body that they do breathe in. Good nutrition, plenty of sleep and avoiding harmful substances like tobacco or alcohol (if anyone in the family does enjoy these things) are key. This will also help your Father's recovery.

    Please let us know how things progress.

    Best wishes,

    Helen

  • Thanks Helen,

    It's so nice of you to take an interest and write a response to my problem.

    Today I learned that the bug that dad has is called mycobacterium and is not as infectious as actual TB although it is very close to it.

    That explains why we havent been contacted with instructions regarding quarantine or told to wear masks round dad etc.

    We're still in the same position i.e. waiting for the TB team to discover which strain of the bug this is and then design a treatment plan. But the confusion and stress is massively reduced.

    It will still mean some time in hospital and a 2 years course of treatment so dad was very despondent. But I think it's quite a relief not to be dealing with full on TB and feel much better about things.

    Just hope we can get started on treatment soon!

  • I'm glad that you have a bit more clarity. It's always better when you know what you're dealing with.

    I hope the doctors sort out the treatment plan soon and your Dad starts to feel better.

    Best wishes,

    Helen

  • Thanks XX

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