A former teacher who was bitten by ticks that he didn't even notice was left bedridden for more than a year. Roland Maxted was "unable to work, study or do any strenuous exercise".
Roland was previously fit and active, but has now battled quarterly week-long periods of illness for many years. He gets fatigue, chills, dizziness, headaches and muscle pain, but without the high temperature normally associated with flu-like symptoms.
It was in August 2018 that Roland got to the point where he sought medical help. He had been on honeymoon in Cuba and Mexico and, when he returned, he became unwell and spent a week in hospital.
"Numerous tests" were done, including for malaria and leptospirosis, but they came back negative, reports HertsLive. Roland was discharged, feeling "none the wiser".
Returning to his GP, he was advised to visit the Hospital for Tropical Diseases at University College Hospital in Euston.
Roland, from Abbots Langley, Hertfordshire, said: "After three consultations and further extensive tests, still no one had any idea what was wrong with me. By sheer chance, we were talking to a retired GP friend of ours who recognised my symptoms as being very close to those experienced by his wife.
"She had been diagnosed with Lyme Disease and co-infections by a laboratory in Germany and he recommended that I sent off blood tests to the same lab. The results showed that I was highly positive for Lyme Disease and co-infections."
Lyme disease is caused by Borrelia, a spirochete bacteria, and it is the most common tick-borne infectious disease in the northern hemisphere. The disease is endemic in many parts of the United Kingdom, particularly in woodland or heath-land areas but disease-carrying ticks can also be found in cities and gardens.
It can also be transmitted during pregnancy from mother to baby. Symptoms can start with a rash, commonly known as a 'bulls-eye rash' but it can also be more irregular, leading to a misdiagnosis of ring worm or cellulitis.
The rash may not be detected straight away and one in three Lyme patients experience no rash at all. However, some people will have no idea that they have been bitten, as ticks may be as small as a poppy seed and remain undetected.
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If caught in the first few weeks after a bite, Lyme can be successfully treated with antibiotics. However, once it becomes chronic, it is notoriously difficult to diagnose and treat, and Lyme disease is often misdiagnosed as another illness or even "not taken seriously" enough by doctors, according to Roland.
Speaking on the effects the disease has had, Roland said: "In 2020, I stepped down from full-time teaching after a career lasting 31 years. In the 15 years spent at my last school, illness resulted in me taking almost a year in cumulative sick leave.
"Just a few months ago, I was going to the gym regularly, rowing, and singing in my local church choir. I was one year into part-time study for an MA and had built up a portfolio of private tutees. I had begun part-time, non-residential training for self-supporting ministry in the Church of England.
"Now, all of that is on hold as I am unable to work, study and do any kind of strenuous exercise. We are eating into savings to fund my treatment as an hour’s physician consultation costs £500, my last set of blood tests almost €2,000, and two-months’ supply of herbal remedies is £600 to £700."
The awareness of the disease is currently small due to NHS doctors receiving training which does not go beyond the National Institute for Health and Care Excellence (NICE) guidelines. Roland added: "Much more is known about it in countries such as the USA, Germany and Belgium to where patients often have to turn in order to be successfully diagnosed and treated.
"NHS tests for Lyme are often superficial and so patients are forced to turn to private physicians at home and abroad, often at great expense. In my own case, Lyme was never mentioned as a possibility or tested for at the UK hospitals which I visited."
Roland was treated with two courses of double antibiotics, but these did not make a difference. His symptoms were kept at bay for nine months with a homeopathic treatment called micro immunotherapy, which offers minute adjustments to the body’s immune system.
However, the treatment was not enough to cure the disease and - in the autumn of 2022 - the symptoms returned with "vengeance" making him ill for seven weeks. This led Roland to consult one of the world’s leading experts in Lyme disease, who is a German doctor with more than 30 years’ experience in the disease who sees patients online in Germany, the UK and the USA.
"Blood tests revealed that my immune system was further weakened since the tests in 2020 and the prevalence of Borellia and Bartonella (a co-infection) was massively increased," Roland said. "All the co-infections normally associated with Lyme were present in my system.
"Moreover, a positive anaplasma test confirmed that I have been bitten by a tick. Unfortunately, the test cannot tell me when this was but, given the duration of my symptoms, it was probably years ago. I have no memory of it, nor of developing a rash, but perhaps I am among those one third of patients who did not do so."
In mid-January of this year, Roland started a course of herbal remedies with a view to introduce antibiotics at a later stage. Roland emphasised that herbal treatment is an "integral part" of Lyme treatment and research published by Johns Hopkins Medical School in the USA in February 2020 revealed that no one can be cured of Lyme by antibiotics alone, as they also need herbal remedies which include cryptolepis, aka Ghanaian Quinine.
Roland's doctor is "hopeful" that he will feel better in six to nine months, however patients can require two to three years of treatment before they are able to lead a "relatively normal life". He has been experiencing a "strong reaction" to the treatment, which lures the bacteria out of their hiding cells and into the bloodstream.
The infection can spread anywhere in the body if left untreated, leading to around 70 recognised symptoms. People can develop issues with their endocrine and neurological systems and experience musculoskeletal, cardiac, dermatological and neuropsychiatric problems. May 2023 is Lyme Disease Awareness Month. The charity Lyme Disease UK is running an annual awareness campaign and are encouraging members of the public to take part via its website here.
Roland added: "My friends who are Lyme sufferers and I want to see a far greater understanding of Lyme amongst health care practitioners in the NHS and greater resourcing of testing, diagnosis and treatment. We look forward to the day where there is a specialist Lyme doctor in every hospital in the UK. In the meantime, we 'Lyme warriors' will go on fighting!"
As part of his efforts to raise awareness, Roland held a 'Wear Lime for Lyme' day on May 5 with his local barber Taylor Murphy at Perception Male Grooming and staff getting involved. Roland's West Highland Terrier, Bubble, also showed his support by joining in with his own lime outfit.
Lyme Disease UK similarly wants to raise awareness of the disease among the general public as well as underlining the importance of taking precautions against ticks, and the steps which should be taken if bitten. For more information, visit the website here.
Lyme disease symptoms
Symptoms of Lyme disease include but not limited to:
- Malaise;
- Unexplained flu-like symptoms;
- Soreness and achiness;
- Light and noise sensitivity;
- Cognitive problems;
- Fatigue;
- Stiff neck;
- Facial palsy;
- Numbness
- Tingling
