Rollercoaster of Hope and Fear

[Heroxx]

My Journey with Tuberculosis: A Rollercoaster of Hope and Fear

In February 2023, my life took an unexpected turn when I was diagnosed with fully sensitive pulmonary tuberculosis (TB). I commenced anti-TB treatment on February 8, 2023. The news was shocking, and I found myself grappling with a whirlwind of emotions.

While on treatment, I experienced some complications, including a pyrazinamide-induced drug rash and loss of visual acuity due to ethambutol. Consequently, my treatment was adjusted, and I restarted triple therapy on March 7, 2023. I committed myself to the 26-week treatment plan, determined to overcome this illness.

Initially, the treatment was tough. I experienced various side effects that affected my daily life, but I pushed through, hopeful that I would leave TB behind me. After completing my treatment, I was optimistic about my recovery. However, I began to experience palpitations and occasional chest pain, which left me concerned. Despite undergoing 2-3 X-rays that showed no signs of TB, I thought I was on the mend.

Fast forward to last week, when I received the most disheartening news: my blood samples indicated either active or latent TB again. The weight of that diagnosis has hit me hard, and I find myself feeling deeply depressed and anxious about what this means for my future.

I can’t help but wonder what went wrong. How could I have contracted TB again after completing my treatment? I’m left with questions swirling in my mind: Is it possible that the blood sample results are inaccurate? Do I need to start treatment all over again?

I’m reaching out to this community for advice and support. Has anyone else experienced a similar situation? How did you cope with the emotional toll of a TB diagnosis, especially when it feels like the journey might not be over? I’m eager to hear your stories and any insights you may have on managing this situation.

Thank you for taking the time to read my post. I appreciate any support or advice you can offer as I navigate this challenging chapter of my life.

[HelenC Partner TB Alert]

Dear Heroxx - thanks for sharing your TB story to date and the upsetting news that you have just received. TB can indeed return, if your initial treatment was unsuccessful or if you breathe in TB bacteria again. However, it sounds like more tests will be needed for you to know for sure if this is the cause of your new symptoms. This is because TB blood tests pick up antibodies to TB rather than TB bacteria itself, so they only show that you have had TB at some point.

I appreciate this probably leaves you with more uncertainty and questions. Take heart though, it sounds like your doctors are on the case and taking the right action to find out what is happening. They will then come up with a treatment plan in due course. Also, you have already taken such a heroic approach to your early treatment and you know what to expect going forward.

Hopefully you will hear from others on this forum with similar experiences. Do keep us posted on the outcomes of the next few days and weeks.

Best wishes,

Helen