Lyme disease in the UK
This is an account of my husband's battle with Lyme disease, an underdiagnosed condition in the UK
My husband Reg used to work as a landscaping contractor. He had his own business and was self-employed. He specialised in “hard” landscaping – building walls and paths and ponds and did house-painting and decorating. He combined this with small-holding, keeping pigs, sheep and poultry and making cider and took care of our youngest son. He was successful in his business and a very supportive husband and father.
Three years ago he fell ill with an infection that resembled a bad cold. This lasted three months. He started sleeping badly, waking often with night sweats. He had problems with his prostate which became enlarged and had severe pains in all his joints. Our doctor was unable to find any diagnosis which fitted such a wide range of seemingly unrelated symptoms and put Reg’s condition down to his modest alcohol consumption. He prescribed pain killers and referred Reg to a rheumatologist initially, and later a psychiatrist. Within a year my husband was unable to carry out any physical activity and could not walk far, use his hands, or raise his arms above his head. He was taking strong painkillers every day, alpha blockers, medication to shrink the prostate, and eventually anti depressants. He had chronic severe pain that could not be alleviated.
In his frequent visits to the doctor he became aware that he was being regarded as work-shy, a hypochondriac and a bone-idle drain on the State, despite the fact that he was not eligible for any State benefit, and was not receiving anything. He changed doctors and started taking me to his appointments. It was at one of these appointments when I was present that his new doctor mentioned that Lyme Disease was a possibility and asked Reg whether he had ever been bitten by a tick. Reg has had numerous bites both from ticks and from spiders. She organised a blood test for Lyme.
Weeks passed with no result. When we chased it the doctor told us that the sample had been lost. She said, however, that the blood technician had told her Lyme was not a problem in the UK and could not account for my husband’s symptoms and so she would not take a fresh blood sample for testing.
Months passed. Reg’s personality deteriorated. He was moody and irritable and could not cope with answering questions, changes in plans, or stress of any kind. With our financial situation worsening by the day he had a lot to be stressed about. His memory faltered and he could not remember familiar routes or the name of villages.
Then a few months ago he had another tick bite. A locum doctor prescribed Doxycycline without any argument. For the first week of the course of antibiotics Reg was ill with a high fever, sweats and flu like symptoms. In the second week he developed grey patches and streaks in his vision. A retinal eye scan showed cotton wool spots on the retina. These took two months to heal and disappear. At the end of the month course of treatment his use of painkillers was halved, his pain in his joints, though it hasn’t abated fully, is so much better that he was able to set to work decorating the house. He is now planning to start up in business again as a painter and decorator. He is close to his old self. He still gets tired and can only work for a few hours a day but is definitely on the mend.
Do our doctors acknowledge that he had Lyme disease? Not at all, though it was first suggested by our second doctor. The illness in the first days of Reg’s course of doxycycline is, in their view, merely a coincidence and an unrelated virus. The fact that he is unlikely to have been ill when given antibiotics if there was not an underlying bacterial infection is not something they will contemplate. The retinal cotton wool spots are due to diabetes in their view , though my husband has not, and has never had, diabetes. My husband’s recovery is due, they say, to the antidepressants and the counselling. And the reduction in pain in his joints? A more positive mental attitude!
As a biologist I was shocked at the level of ignorance of our doctors who seemed to have little understanding of insect and arachnid vectors and diseases and an unwillingness to do any background research. Today when Reg was having his last appointment with an opthamologist (who confirmed that the cotton wool spots have disappeared from Reg's retina) he had a conversation about Lyme, ticks and spiderbite. The opthamologist asserted flatly that no UK spider can bite a human! I don't know anyone who hasn't at some time been bitten by a spider. This opthamologist knew nothing of tick bites, or Lyme disease. I can only hope that he has heard of Toxocara!
As for now? I am cross with our doctors about the time this has taken, particularly as some of the damage may be irreversible. However, I am very happy that my husband seems to be on the mend at last. A few month ago our future looked very bleak and now we have hope, new plans and our life back.
Lyme disease in the UK is caused by Borrelia garinii spread by deer or sheep ticks. It can produce a characteristic rash described as a “bulls eye”
The disease bacterium is a spirochaete (similar to syphilis) It can invade tissues causing a wide range of symptoms, including arthritis in the joints. It can migrate to the heart, brain, eye; cause fatigue, depression, numbness, facial palsy. It can be confused with rheumatoid arthritis, multipleschlerosis, fibromyalagia, lupus and a whole range of other conditions. It can cross across the placenta and infect an unborn baby, and it probably can be sexually transmitted (as can syphilis)
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