‘My holiday Lyme disease horror’
A young woman from Bath is bouncing back and rebuilding her life after her world was turned upside down when she contracted Lyme disease while travelling in May 2016.
India Matthews was travelling round Asia with a friend after finishing her A-levels, and was excited to be taking up a place at Newcastle University that autumn. Young, healthy and energetic, India, then 18, was typical of many teenagers, and was not expecting to be floored by illness. Sitting in a restaurant in Thailand, she was browsing the menu when she felt a spider on her arm. She said: “The next thing I know, it bites me. I flicked it off, but my arm started throbbing.” India, now 20, continued her evening as planned, but something was not right. Her arm was still itchy days later, and had started to swell in size. Determined to enjoy herself, she tried to ignore the pain. But after two weeks the problem had worsened. India started waking up with a stiff neck, feeling feverish and aching. But, as people often get ill while travelling, she carried on ignoring it. She said: “I just thought ‘oh well, I’ll get over it.’” Then, a month after the initial bite, India couldn’t take anymore. She said: “We were in a hostel and I’d gone to sleep as normal. However, I woke up and I felt odd. “My vision was blurry, my hands were tingly and my whole neck had gone completely numb. I was freaking out.” India went to hospitals in Singapore, Vietnam and Japan over in the following weeks to try and discover what the problem was. But, even after extensive tests, no
Still unclear as to what her problem was, India returned to a tropical disease specialist in Bristol. Yet more testing led to more unanswered questions, but one possibility did emerge: Lyme disease. She said: “A family friend had had it and she had been constantly telling my mum that she thought I was showing the symptoms. “She had been to Germany for treatment, so she put us in contact. “My parents had only wanted to do this as a last resort, as it’s so expensive, but we were left with no choice because of the treatment in England. “I think the problem is that testing is so unreliable. Unless you catch Lyme disease in the first month, it’s so difficult to diagnose.” Extensive testing in Germany revealed that India had SIX different tick-borne infections, including Lyme disease. Her relief at finally being able to put a name to her problems was immense. She said: “I just cried. The man who ran the clinic set it up because his daughter had become ill with Lyme disease and no one knew what was wrong with her. He’s just the nicest person.” India was given extensive treatment and, six months on, she is still combining antibiotics and herbal remedies. She still takes 30 of the latter a day. She said: “It’s pretty full-on. Some of my symptoms have improved but it’s very up and down. Some days I feel ill, some days I feel better.” Although the diagnosis meant India could begin to understand what was wrong, it did not stop the disease impacting on her life. When she first returned from travelling she tried to embark on her studies at Newcastle University, but only lasted a week before dropping out. Now a student at the University of Bristol, the disease played a significant role in changing the course of
one could tell her what was wrong. Worried, India decided to cut her trip short so she could seek medical help in the UK. She said: “My parents were obviously really concerned. “They took me straight to a doctors, and that’s where it all began.” India was tested for “every possible thing” - but there was still no diagnosis. She said: “I saw so many different consultants - every kind you can think of. My mum was doing so much research to find out what was wrong with me because no one could tell us. “They were like ‘oh, you’re just exhausted post-travelling, you’ve got glandular fever, you’ve got ME,’ but I couldn’t read - I couldn’t do anything.” India went to see a neurologist but was told there would be a six-month wait. She said: “It was ridiculous. I didn’t want to wait for that long, so we paid privately. “I went four times and every time they tried to prescribe me drugs. “But, I was only 18 at this point so I didn’t want to be taking them, and one drug actually just made me feel worse.” India was eventually diagnosed with neurological functional disorder, which she says is “basically a very broad term for chronic fatigue”. But, she feels like this was just a way of explaining away her problems. She said: “It was just felt like they were saying ‘we can’t really explain your symptoms, so you’ve got this.’ “At this point I was really getting really light headed, having fainting spells. Any symptom you can think of, I had it. “It affected my sleep a lot. I used to get really bad sleep paralysis. “That’s when you wake up and your brain is fully active, but your body is completely paralysed - you literally can’t move. It was terrifying.”
supposedly. Honestly, the last two years have felt like my darkest moments - it’s been awful.” India is determined to put the disease behind her, although she is yet to recover completely. She said: “I have monthly reviews and, after six months, my Lyme disease has almost gone. “The next step is to just keep going with the treatment. I’m young, so I should get better. “If I’m ever stressed or really exhausted the symptoms might return, but they should go mostly fingers crossed.” Despite not wanting to go to study in Bristol initially, India is now enjoying herself and looking forward to the future. The religion and theology student says she wants to find a career where she can help people when she graduates. She said: “I want to offer emotional support. Open up my own cafe, with really healthy food. “I want to do something with my illness.”
the last two years and altering her relationships. “I can’t drink on antibiotics, so I feel like I’ve missed a huge chunk of that side of university. “I had really debilitating symptoms - I couldn’t do much. “I would say I’ve lost a few friends over it. “Maybe I resent them slightly because they’ve not really been there, or we’ve just drifted apart because I can’t go out as much and do other things I’d normally do with them. I’ve missed out on so much. “But, my boyfriend’s been so good, and my parents having been amazing.” India said one of the problems with Lyme disease is that, outwardly, it is very hard to tell someone is suffering. She said: “If you look at me now, you wouldn’t know I was ill - I don’t look it. That’s the hardest thing you look well but you aren’t. “A lot of the suffering is mental. But, I didn’t get any support because I didn’t look bad enough,