At Caudwell LymeCo we hear so many stories about lives ruined and the devastating effects of Lyme disease that we sometimes wonder if anyone actually recovers from this horrible illness. So we are happy to share a story with a happy ending.
Above all, we want to share the very important lessons to be learned from it.
George Clowes, fully recovered from Lyme disease
George Clowes is used to spending most of his time out of doors. As a market gardener in Hampshire, he cultivates flower bulbs and enjoys the countryside.
When he caught Lyme disease, he was already well aware of ticks and the threat they pose, as he had already suffered from Tick Bite Fever in South Africa years earlier.
George was lucky in several ways. He was diagnosed and treated very promptly, and he recovered fully. While we know that being treated without delay increases the chances of making a full recovery, there are other factors which aren’t fully understood.
CLC: When and where did you catch Lyme disease?
George: In North West Hampshire on a farm between Newbury and Basingstoke. It was mid-June, 2003.
CLC: What made you go to the doctor?
George: I had a splitting, extraordinarily severe headache and felt as if I had flu along with a slight swelling in my groin. I knew something was not right, as I never get a headache and very rarely get flu.
“Search for a bullseye red mark. If you do not have one it does not mean you don’t have Lyme disease”
CLC: So always being a very healthy person was what helped you realise there was something out of the ordinary going on. How did you find out it was Lyme disease?
The characteristic Lyme disease rash
George: I had only once before suffered from such an awful headache with flu-like symptoms and that was in about 1974 when I contracted tick bite fever in South Africa. I therefore Googled ‘tick bite fever UK’ and was told to look for a bullseye red mark. This I found on my right lower leg. The tick had long gone. It was very distinctive and absolutely circular at that time being red and about 1 inch in diameter with a white bullseye. This grew over the next few days to a diameter of some 2 inches before slowly fading over the next week. I therefore was pretty sure I had contracted Lyme disease and went to see my local GP at the Oakley and Overton Partnership.
CLC: You were lucky that you did have the rash, and such a distinctive form of it, as many Lyme patients never have a rash, or else have one that doesn’t look like the textbook target shape. How did your GP react to your self diagnosis?
George: Fortunately my usual GP was unavailable and I instead saw Dr Rachel Hickson, who is now at the Andover Health Centre, who had previously worked in the New Forest and therefore had experience of Lyme disease. She confirmed that my self-diagnosis was indeed correct and put me on a course of antibiotics, Doxycycline, for about 2 ½ to 3 weeks. She also took a blood sample for testing which came back negative.
“Ticks have a nasty habit of accessing extraordinary places”
CLC: It sounds as if your GP may not have been aware blood testing isn’t necessary when diagnosis can be made from a rash. What advice would you share with other people to help them recognise a Lyme disease infection?
George: If you get a blindingly severe headache which may (or may not) be coupled with flu-like symptoms immediately search for a bullseye red mark. If you don’t find one it does not mean you do not have Lyme disease. Go to the doctor and report that you think you might have it. Invariably I believe blood tests come back negative and they prove entirely unreliable. Much rather be safe rather than very sorry and insist on being prescribed a long course of strong antibiotics.
CLC: How much did your doctor seem to know about Lyme disease? What did they do that you think all doctors should do for a patient who may have Lyme disease?
“All doctors should be made aware of the symptoms and awful consequences of not treating it. Even if in any doubt whatsoever they should immediately prescribe treatment to be on the safe side.”
George: Fortunately because of her work in the New Forest my doctor knew all about Lyme disease as she had seen it often. All doctors should be made aware of the symptoms and awful consequences of not treating it. Most importantly there needs to be a 100% reliable blood test. Even if in any doubt whatsoever they should immediately prescribe treatment to be on the safe side.
“Blood tests prove entirely unreliable. Much rather be safe rather than very sorry and insist on being prescribed a long course of strong antibiotics.”
CLC: How did you feel during treatment? Did you recover fully during treatment?
George: The headache and flu-like symptoms disappeared within a couple of days after which I felt fine.
CLC: Have you had any lasting symptoms since treatment?
George: I have not suffered, and am not suffering, from any side effects that I know of. As far as I know I have thankfully fully recovered.
“I was told to look for a bullseye red mark. This I found on my right lower leg. Blood sample testing came back negative.”
CLC: Do you feel anxious about possibly catching Lyme disease again? Is there anything you do differently nowadays to keep yourself safer?
George: I’m not anxious as I’m always outside on farmland and up in Scotland where ticks abound, and in any event I know exactly what to watch out for. I don’t do anything different except be sensible in my attire so that ticks have less of a chance of getting at me. That said, ticks have a nasty habit of accessing extraordinary places despite my best efforts to keep them out!
“I don’t do anything different except be sensible in my attire so that ticks have less of a chance of getting at me.”
Caudwell LymeCo Charity was created primarily to help the thousands of people in Britain who are less fortunate than George, and who suffer lasting consequences of Lyme disease. We need everyone to be treated promptly, and prescribed sufficient courses of treatment; and we need to understand why some people still do not recover.
Lyme disease is one of the most under-researched illnesses in the western world.
Oh dear. Doesn’t this article reinforce the myth that 2 -3 weeks of doxy at 100mg a day is enough to treat Lyme and if you are still ill it must be “something else”? I think a bit of research among patients would show that 200mg twice a day for at least 6 weeks, or longer is symptoms persist is what is needed by most people. Especially as most aren’t lucky enough to find a doctor to diagnose them as soon as they are infected.
You were very lucky to consult with a LD aware GP. My daughter developed the bulls eye rash and came down with flu like symptoms about 2 weeks after camping at a festival in an area known for ticks (we subsequently realised) and a field that is normally grazed by sheep.
We went to the out of hours service at the local hospital because we suspected LD, having googled the symptoms. We were told that it definitely wasn’t LD, she’d probably been bitten by a horse fly, that even if it had been a tick it probably wasn’t infected. Prescribed antihistamines and pain killers. We returned three days later as instructed if nothing had improved, saw the same nurse practitioner and given the same advice.
Really wish I’d been so LD aware then as I am now. My daughter got better after a week or so, but I suspect she is still at risk of developing the full blown disease. I understand it can lie dormant for some years.
If only that nurse had taken the trouble to investigate rather than guess!
I think it is interesting that the blood test was negative, although he had the bull’s eye rash which is diagnostic. Most doctors are advised that a negative test is proof that Lyme disease is not present.