The following chapter is pulled from Andrew McGuinness' newly released book, Anatomised. This novel tells the story of a desperate battle against one of the world’s most dangerous and fastest spreading tick-borne diseases - Lyme disease. We love how Andrew uses fiction to explore the complexities of the illness experience and hope you will check it out.
The book officially launched TODAY, May 3! To read more, check it out on Amazon or at Barnes and Noble. A portion of Anatomised sales will be donated to support our work at STS!
Major Tom, Dr. Google and Eureka
By, AF McGuinness
Jack ransacked the internet for “Clinically Isolated Syndrome” and discovered Dr. Rama was out of touch with current research. Rather than having a 50/50 chance, the actual likelihood of developing MS in the next five years was closer to 80%. Patients with abnormal MRIs and spinal fluid were at higher risk of conversion, and the chances of converting after this period increased year on year. In America, CIS patients often started treatment for MS because it delayed conversion.
Trying to remain positive, he trawled the internet further looking for other possible causes of his illness. He consulted academic papers, patient forums and media articles. Perhaps this was the wrong thing to do; discovering the full range of neurological calamities that can befall a human being, including motor neurone disease, sarcoidosis and HIV. Using his PC as a medical encyclopedia and virtual G.P. was a minefield. Jack shared symptoms with countless other diseases, the commonest of which was still MS, and most were similarly incurable and degenerative. “Dr. Google” was self-contradictory too. He’d say one thing one minute, something else the next. Most forums were based on patients’ subjective experiences, predominantly in America. Stories were anecdotal and nightmarish. Members of discussion groups with no apparent medical training were diagnosing new members with all sorts of illnesses. Although the forums were supportive, twenty people could have wildly different opinions on the same person’s symptoms.
When Alice returned home Jack was already in bed, feeling as though his brain was oozing from his ears. His hands hibernated in wine coolers and he struggled to sleep, listening to trains passing, and the yelping of foxes. He must have drifted off eventually, because he awoke at four in the morning startled by the rare glimpse of a dream. He was grateful for the nocturnal driftwood churned up by the sea of his unconscious. For months now, he’d lost all sense of dreaming or all memory of dreams. He didn’t know if this was his mind melting down or the side-effect of painkillers, but whatever arrived in the summer, this affliction, this unwanted guest, it had acted like a thief in the night stealing all of his dreams in its swag bag.
But this night there remained a bold image of his old collie, Major Tom, the white ruff of his neck flashing in the moonlight as he charged through woodland. Jack had been hot in pursuit. Tom picked up the scent of something and was hunting it down, barking as he ran. On the brow of a hill, in a frosty clearing, Major Tom stopped abruptly, sniffing the ground, then arching his back in silhouette. He threw back his head and howled like a wolf. In the undergrowth beside him was a moving bundle; the old blanket that had belonged to Jack’s mother. Her blankie of love. Jack knelt down, unfolded it and discovered a fox cub that looked up into his eyes. Jack threw his own head back and howled at the stars as if he too was a wolf. And when he looked down again, the cub was no longer there, replaced by a baby. All the things he’d seen die in real life had come back to life that night: poor little Hunter, poor Major Tom, poor fox cub.
It had been a long time since he’d reconnected with Major Tom. Alice had brought him home as a Christmas present; a small puppy of black and white, twelve inches tall, twelve weeks old. They’d trained him, pampered him, fawned over him and loved him for thirteen years, never failing to marvel at his howling at sirens. Every howl was tailored to suit different sirens. And here he was, this night, almost alive, howling in Jack’s head like a supercharged alarm bell. Howling, Jack thought. Woodland. A hiking holiday in Wales. 18 months ago? Sandals and shorts. Horses and sheep. Field upon field of livestock. Pulling ticks out of Major Tom’s skin. Disgusting, swollen parasites engorged with blood. Major Tom died three months later and I, Jack thought, I started to feel unwell too.
Pandora heard Jack shuffle into the kitchen. She sat by the cupboard where her treats were stored. When he looked at her, she wagged her tail. How different Pan was to Major Tom. Just like children, each dog has its own personality. Pan couldn’t or wouldn’t howl; it was more of a half-hearted gargle.
As the PC took time booting, Jack recalled other medical ailments that followed his hiking holiday; mysterious bouts of flu, and colds he couldn’t shake for weeks that stretched into months. He’d been forced to cancel social engagements and one-off charity nights. Aches, chills and a crushing fatigue happened without physical exertion. Even odder, a stiff neck that was just there one morning and stayed for two months, so painful he couldn’t turn his head despite physiotherapy or strong prescription painkillers. And all of these things he’d forgotten about until now, after the Major Tom dream. And hadn’t these non-specific illnesses originated with an unusual rash on his leg? Yes, pale in the centre with an outer border of red that spread outwards in an oval shape at least a foot in diameter.
All of these symptoms after that rash that was so extraordinary he’d gone to hospital and they diagnosed cellulitis, giving him five days of antibiotics. It was as if he’d come back from Wales with a curse. Tom died, then his own series of unexplained health scares that Dr. Munch put down to the stresses of everyday life and Jack’s anxious over-thinking. But does anxiety give you remarkable rashes and a stiff neck lasting weeks? How many times had he broken into a cold sweat and dizziness, almost fainting? And then there were other unexplained things: testicular and bladder pain requiring more hospital visits, scans, blood tests, prescribed drugs. Were these things connected? Weight loss; a stone and a half in three months after Wales. Sleeplessness. Nightmares. Photosensitivity, tinnitus, the list went on. And one night, he remembered, he was sitting in the kitchen of the Fulham maisonette, and he’d said to Alice: ‘Something terrible’s happening to me. Something’s inside me.’ And she was worried he was falling into a depression, which was one of the reasons they decided to sell up and start again by the sea, hoping to leave illness behind.
Sitting now at the farmhouse table in the Bunker, he typed in all of his non-specific illnesses along with the word “tick”. For half an hour he came across the same single answer: Lyme disease. A bacterial infection carried by ticks transmitted to mammals from a bite. Undiagnosed and untreated, it could lead to life-changing illness including damage to the central and peripheral nervous systems. Pins and needles, numbness, brain lesions. Commonly mistaken for MS. His heart raced with recognition. European strains of the disease were more likely to be neurological. Tick, tick, tick, tick, boom!
He researched for hours, coming across American websites. One of these belonged to a “Lyme-literate MD” who preferred to call Lyme “Multi-Systemic Infectious Disease Syndrome”. Having treated thousands of patients from across the world, the doctor had formulated a questionnaire or checklist for Lyme. If a patient scored 46 or more there was a high probability he had a tick-borne disorder. A score between 21 and 45 and the patient had a possibility of Lyme. A score of less than 21 and the patient was very unlikely to have Lyme disease.
Jack got a pen and paper and completed the 55 questions as honestly as he could, underscoring himself in places to counterbalance any unconscious exaggeration born out of a need to name his illness. He scored highly on fatigue, motion sickness, vertigo, tinnitus, burning pains, depression, difficulty reading and writing, sleeplessness, the initial rash, a visit to an endemic region for ticks, testicular and bladder pain, stiff neck, and misdiagnosis of multiple sclerosis. He added up his scores from the four different sections and was astounded by his final result: 94. Lyme, according to this questionnaire, was certain.
He’d seen the name before, but thought it too rare, too “American”. The more he researched, however, the more likely it became. The bite from a tick and transmission of a vile, parasitical bacterium called “Borrelia” that if left untreated could affect the entire human body, most notably the nervous system, including the brain. Late-stage Lyme could cause white matter lesions and neuropathies, tingling, numbness and extreme fatigue, just like MS or syphilis. In fact, around the world experts were calling it “the great imitator”.
Could he have been bitten in Wales? Could he have been bitten in London? Could his beloved dog have brought ticks home in his fur? And Jack remembered how he’d slept in the lounge with his dying Major Tom. How he’d slept on the sofa where Tom sometimes slept. And soon after came the expanding Lyme rash, erythema migrans.
Now Jack was pacing, wanting to wake Alice. His head was full of questions: why didn’t anyone ever suggest Lyme disease? Was it just too rare in the UK? He looked again at photographs of Lyme rashes. Most were identical to the one he had. Yes, everything added up: not stroke, not tumour, not MS, but Lyme, Lyme, Lyme. A bomb seemed to go off in his head. Lyme was a name for his illness, a cause, and it was also a light at the end of a tunnel; a light that was no longer a train. It was a way out into daylight.
The excitement grew too much and he woke Alice. He sat on the edge of her bed telling her things before she was fully conscious. She asked him to slow down. She pushed herself up the bed. ‘You’ve never been right since that trip to Wales.’
He told her about what happened when an infected tick passed nasty bugs into the blood stream. How bacteria sought out hiding places to breed and prosper, like terrorist sleeper cells. ‘The terrorists have infiltrated the building of me,’ he said. ‘They got in at the ground floor (foot), spread to the next floor (leg), evaded all security (immune system) by disguising themselves. They took the express elevator (spinal cord) straight to the command centre (brain), holding my whole body to ransom. Now they are hiding out in all of my vital organs.’ He rambled, how Borrelia can be killed off with antibiotics if caught early, but how hard they are to kill if they’ve had time to spread and hide in the brain, the heart, the liver, and the lymph nodes. ‘In fact,’ he said, ‘the little bastards can live almost anywhere in the body. They’re living in my brain, Alice.’
‘My God, Jack. Could you have Lyme disease?’
‘Everything fits. We just need to prove it.’