My Lyme Story: Roland Maxted

For many years, I had been ill every 3 or 4 months for 7 or 8 days at a time with fatigue, chills, dizziness, headaches and muscle pain, but without the high temperature that one normally associates with flu-like symptoms.

In August 2018, after honeymooning in Cuba and Mexico, I was very unwell for a month which included a week’s stay in my local general hospital. Numerous tests were sent to Porton Down, including malaria and leptospirosis, and all came back negative. I was discharged none the wiser about my illness and so my GP suggested that I go to the Hospital for Tropical Diseases at University College Hospital in Euston. 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 send off blood to them.

Roland Maxted

Initially, I was treated with two courses of double antibiotics but these made no difference at all. My symptoms were eventually kept at bay for 9 months by a homeopathic treatment called micro-immunotherapy which makes minute adjustments to the body’s immune system. However, this was not enough to cure the disease and in the autumn of last year the symptoms returned with a vengeance, laying me low for 7 weeks.

I decided to consult a German doctor with over 30 years’ experience in treating Lyme disease. Blood tests revealed that my immune system had further weakened since the tests in 2020 and the levels of Borrelia and Bartonella (a co-infection) had increased. Other co-infections often associated with Lyme disease were present in my system. Moreover, a positive Anaplasma test confirmed that I had been bitten by a tick. Unfortunately, the test could not tell me when this was. 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 this year, I began a course of herbal remedies with a view to introducing antibiotics at a later stage. Herbal treatment can be an integral part of Lyme treatment. My doctor is hopeful that I will be feeling much better in 6-9 months but I have heard of patients requiring two or three years of treatment before they are able to lead a relatively normal life. I am experiencing a strong reaction to the treatment which lures the bacteria out of their hiding cells and into the bloodstream. One can feel worse for many weeks before starting to feel better. I have also suffered from clinical depression and anxiety for many years and I now suspect that Lyme has been a contributory, though not the only, factor. I am now 3 weeks into a 3-month course of antibiotics and have experienced a strong Herxheimer reaction for the past week. I am hoping that this is not going to last for the duration of the course as I have fatigue, chills, headaches and muscle aches again.

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 my 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 consultations, blood tests and medication are very expensive. My heart goes out to those patients who are unable to afford private treatment and who are scrabbling around for remedies at the mercy of “quack” physicians.