I have just had a positive for TB in my first sputum test. I am waiting for the 2nd and 3rd sputum test results which wont be out till Monday.
Meanwhile, I am just an emotional mess. I am petrified that I have infected my husband my 6 year old boy. We are due to get on a plane to Spain in Dec 15 to see family for Christmas and it looks like it will be cancelled. And it is all my fault. Treatment is going to cost us as we have very little insurance only. I am scared of the treatment and its side effects, will I go blind, kill my liver, go deaf? Will this recur when I am older and my immunity is dead low?
I am just filled with guilt, fear, worry and anxiety. And I cant speak to anyone I know because I know I will get stigmatised. I just feel so alone right now.
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MagicCauldroness
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I am so sorry to read of the distress that your recent positive test for TB has caused you. It must be an awful thing to go through.
Please don't cancel your holiday just yet though. It generally takes just two weeks of treatment for any infection risk from TB to be stopped. Hopefully, you will have your final results and start treatment in time for that.
Though your husband and son may have been exposed to TB, please be reassured that it is not as easy to catch as a cough or cold, and they will be offered a test and any necessary treatment as soon as possible. Also, don't feel guilty, as anyone can get TB and you must have got it from somewhere yourself.
With regards to your treatment, I can't tell you how you will react to the medication. Though the treatment can be unpleasant, the side effects are different for everyone. The important thing to remember though is that it is life-saving and also stops any risk of you passing TB on to others.
It is good that you are reaching out to others through this forum, as listening to other people's TB stories and getting their advice is a great way to get through this.
Thank you for your reply HelenC! I have read that people get so weak from the medication, I wonder if I will be the same.
The hospital has just told me that results will only be outon Monday as I have just only submitted my 3rd sputum test today. I don't know how I will spend this weekend. Going insane, probably. I really hope that it won't be a complicated case and treatment can be started soon.
Both my husband and son went to the hospital to get their Mantoux test done. But was told by the pediatrician to wait for my results and recommendation from my doctor. I guess we are all just so anxious!!!
I think that's the preconception of TB that most people, even myself, have. That it only happens to a certain group of people. And when it happened to me, it's a whammy in the face. And brings on the feeling of guilt like I did something wrong and brought this crisis into the family.
Yes I am glad I reached out. It was so debilitating when I was told of my first results. And even more lonely and scared after the doctor told me and hung up. I was just left alone at home with my 6 year old as hubs was at work. Wondering what to do or say.
Reading other people's experience has helped me tremendously. I know what the treatment is and a bit of what to expect. I am just afraid of being quarantined as my boy has never left me, not for a single night, in his 6 years of life. But I will have to for his sake. His tears will tear me apart.
I guess once the results are out, I will be off this emotional roller coaster and be more objective and focused. Right now, I am thankful that there is this forum here to support me emotionally. Thank you so much.
I know it's not easy to go through such an "experience", but you need to stay positive and look after yourself as much as you can.
I took TB treatment for 6 months and had absolutely no side effects so I hope the same for you.
Regarding your worry about passing it to your family - it could well be that they haven't got it. My husband was next to me when I was coughing (and had no idea it was TB) and luckily he hasn't got it too. In fact nobody that was around me and was tested seemed to have caught it. My mom's results showed latent TB but she could have had it for a while.
However my baby niece was given antibiotics for 3 months even though her results came negative because she had already had done the anti TB vaccination and it could have influenced the results. She was only 1y when she started the treatment and Thank God she is fine and healthy.
I understand you are feeling guilty, but it's not your fault and anybody else could have been in your place, so stay strong and focus on recovery.
I had worked from home for 2 weeks and everybody was supportive. I know it's not easy to talk about this with anyone, but for sure it helps to talk with family and good friends. There are many people out there who had TB and it's nothing to be ashamed of.
As far as I am aware the TB treatment is free within EU and possibly in other countries too.
Thank you Dana02 for replying. It is hopeful to know you did not have side effects to the meds. I pray if I go through it, I will have minimal effects too. Unfortunately, we are not in EU but in Malaysia. I am Malaysian so I can get pretty much free treatment. I don't know if my Spanish husband and son is elligible for it. I hope they are.
I am praying every night that my son and husband will not be infected. I was told if I am in the early stages then the chances of infecting others is lower. I was coughing so much before with my son just next to me. And in an enclosed car too. That worries me so so much.
I think I am waiting till Monday for the results to come out. Once I know what is happening, then I will tell my brother and then discuss with him how to tell my mom. My mom is the panicky one. She is always telling me to look after my health etc. She would be so so worried.
Thank you D for your kind wishes. I will try my best to stay positive.
You are not alone, I am new in this group but I feel so free to tell there my story, but after the 3rd sputum is negative then you are allowed to go home , i was so lucky that my kids didn’t get this infection from me, I wish you speedy recovery
Sorry to read you distress but I totally understand! TB is a horrible disease and when you have kids that have been exposed to it I know I felt/ was so poorly with it I dreeded the thought of a diagnosis for them.... I felt so guilty about my mum and partner having latent tb too! Treatment has been ok no major issues just remembering to take them and resent heartburn. Side effects outweigh the tb disease 100% to me!
Keep your holiday you deserve it with what you have been through plus you won't be infectious then anyway! I tell everyone and anyone about my tb experience now don't be ashamed it's not our fault we contracted it! Theses group chats help understand our own and others experiences allowing us to cope. X
Hi Soul01! Thank you for asking. I have not as my 2nd and 3rd sputum test was negative and there was nothing else indicating tuberculosis. As such, my pulmonologist wants to wait for the culture results to see if it is positive or not. We will find out by the 24th December 2018, latest. What a Christmas I am going to have ;( Meanwhile waiting for the culture results, I will have to submit another sputum test on the 10th December, xray and blood test again. Depending on the results, he will see if he can clear me to fly to Spain...
We never did a blood test. Maybe because the sputum test superceeded it. I am still unsure. They have not cleared me yet. Because of that 1st positive sputum, they want to do more tests. At the moment, I am still undiagnosed. I have had doctors tell me that 1 positive sputum test should have been enough to start treatment immediately. So I really dont know anymore.
Hi! I am new here, thank you for sharing your story, I just have received my TB blood test results, and I am very worried, so came here to get some idea of what others experiences with the treatments. Hope you are doing well!
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