Student stories: My TB journey
To mark World Tuberculosis (TB) Day (24 March), Oxford DPhil Interdisciplinary Bioscience student Ashwin Jainarayanan has shared his experience of living with TB and his road to recovery.
At age 26, Ashwin first noticed something was wrong while playing badminton. His reactions were slower, and he was tiring more easily when he played. However, it would be a year before he began treatment for TB.
Symptoms causing concern
“The symptoms were so vague at first, so I don’t blame the clinical team. No one considered that it could be TB.” Ashwin suffered with ongoing symptoms of fatigue, fevers, weight loss, back pain and rashes that were so painful he couldn’t walk, but never the persistent cough and breathlessness so classically associated with TB. After a year of blood tests, chest x-rays and investigations, he knew something was very wrong, but had no clear answer for the cause.
He said it was “frustrating and scary” and after waiting so long for a diagnosis, he “just wanted to know what it was, to face it head on”. Eventually, a biopsy of an enlarged lymph node gave him his answer, not the cancer he and his GP were so concerned about, but non-pulmonary Tuberculosis.
Non-pulmonary TB (meaning TB not affecting the lung) makes up around 50% of TB cases in the UK and explained why he hadn’t had the persistent cough and breathlessness commonly associated with TB.
Ashwin explained: “I was very relieved, I finally had something to fight against.” Having studied drug resistance in TB during his masters in India, Ashwin added: “I was quite satisfied, but I knew six months until the end of treatment was a long time.” Complications made it a long road to recovery but he is full of admiration for the Oxford TB team who “were always at the end of the phone”.
Testing and treatment
Dr Claire Winslade, health protection consultant for UKHSA South East, said: “Unfortunately, Ashwin’s story is not uncommon and we do see delays in patients getting treated because TB is not always initially considered and therefore not tested for. There are excellent TB testing and treatment services in place and patients can make a full recovery if they complete the course of medication. But it’s vital people with symptoms, and GPs and other healthcare professionals think about TB when they see or experience these symptoms.
“Delayed diagnosis and treatment not only impacts the outcomes for patients themselves, but also ongoing transmission. The longer patients remain untreated, the longer they are potentially spreading the bacteria. This is something that we’re working hard to address with our NHS colleagues.”
What to look out for as the general symptoms of TB:
• A lack of appetite and weight loss
• A high temperature
• Night sweats
• Extreme tiredness or fatigue
More information about symptoms of TB that affects the lungs (pulmonary TB) and TB outside the lungs can be found on the NHS website.