Ten years ago, ambition drove me. I had studied at Cambridge University, graduated with honours, enrolled in a well-regarded master of fine arts programme, and had interviewed many of my favourite musicians for a national publication. Five days a week, I woke at 4am, wrote for two hours, worked out for an hour and a half, and then put in an eight- to 10-hour workday. My energy was abundant; it really seemed that I could achieve many of my dreams, as long as I put in the work.

All this had changed by the time I finished grad school. I was exhausted – it was all I could do to get to work, go home and sleep. My social life dissolved. I found myself more and more confused by the world. I lived with double vision, vertigo and torturous pain. One day I had to pull my car over when I suddenly realised I was lost. Where was I? How long had I been drifting off course? Eventually I realised that I was on the correct route – five minutes from my parents’ house, in a neighbourhood where I had lived for over 10 years. I cried when I got there: was early-onset Alzheimer’s possible at 33?

Over the next couple of years, I watched as my mind and body gradually seemed to break down. The worst may have been the day my left leg went totally limp while walking down a broken and famously long escalator at a Washington DC subway station. I hopped down hundreds of steps on my right foot while holding on to the handrail for my life – literally. Or it may have been the cluster headaches, which also are known as suicide headaches – and they nearly drove me to it.

Then came the tests – MRIs, EMGs, EEGs – and the physicians: neurologists, rheumatologists, a psychiatrist; and the antidepressants, anti-anxiety and antipsychotic medications, bringing little relief and no symptom resolution.

Early on, I was told to brace myself for life with multiple sclerosis, or even amyotrophic lateral sclerosis (ALS). After laboratory tests came back normal, a neurologist told me to be grateful and to “take a long beach vacation and see if that doesn’t make your problems go away”. I lay in bed and wished for whatever curse had afflicted me to take my life.

Last February I was referred to a doctor in Virginia who specialises in Lyme disease. Within a month of antibiotic treatment, not only had my pain and fatigue decreased by half, but I found myself reading again – sometimes whole chapters in one sitting! Within three months, I was active for the first time in years. After years of wishing for the relief of death, I am alive again.

Despite my experiences and those of countless others, many authorities state absolutely that antibiotic treatments lasting longer than 30 days are not only useless but harmful. However, just as Amy Tan wrote in the New York Times, when I am not taking antibiotics, I am physically and cognitively impaired. Without treatment, I cannot function; with treatment, I can.

I’ve learned that medical institutions often believe their texts contain all the answers – anything that isn’t in the books is likely to be dismissed. This attitude is irrational, counterscientific, and potentially dangerous for public health at large. Medicine is a science, and science involves ongoing discovery.

I am only one person, but I am too ambitious to have willed or imagined this disastrous illness into my life, not only because I literally would never wish the pain on my worst enemy but because my nature always has been based on curiosity, and my dreams have been big.

Lyme disease is still little understood, but that doesn’t mean it isn’t real. The bacteria that cause Lyme may only be the trigger for a lifelong ailment, but that doesn’t make the disease – whatever it should be called – any less real.

I am disturbed that, because most of the physicians I have seen didn’t know what was wrong with me, their conclusion was that all my health problems had to be caused by anxiety, or were simply imagined. After hearing this for so long, I really was ready to roll over and die.

Now that I am gradually coming back to life, I’ve got goals, and I’m driven to accomplish them. One of them is new: to let people know that Lyme disease is real, while accepting that much to do with it is still veiled in mystery. The medical community must stop blaming patients for suffering from health problems that aren’t yet fully explained in a textbook.