Is Lyme Disease taken seriously in the UK?
A few words about tick bites. Most people probably arent aware theyve had a tick bite. They may be what we call silent. Even if they have they may not think theres anything significant about it and may not bother going to see the doctor. A lot of people dont know what ticks are. Some people know because theyve seen them on their pets and may have seen them on vet programmes on TV. But one things for sure: that the general awareness about the potential for Lyme Disease in the general population is very poor and Im going to present some data on that later on.
Thats just a photo of a tick feeding, you can see only 2 pairs of legs; head and legs buried under the skin. Thats why of course they are difficult to remove, especially to remove the head which is often left behind. But we think its important that the head is removed because there is no doubt that the propensity for Lyme Disease will be dependant on the number of spirochaetes introduced by the tick.
Risk factors for tick bites: exposure of body parts in wild areas of woodland or moorland: walkers, campers, hunters etc are at particular risk and certain occupations such as foresters. But the fact is that anyone who takes a walk in the countryside can be at risk. By far the most common time for tick bites is in the Summer and that may be one reason why the incidence of Lyme Disease is reported to be mainly in the Summer.
So this is a graph showing the reported times of onset in the year for Lyme disease. Now, that may be because people like to go out in the summer but it may in fact be, and I dont know if anyone has got data on this, that even someone whos carried Borrelia for a long time tend to become symptomatic during the summer months.
If anyone knows any more about that, please let me know.
Ive been diagnosed with Lyme Disease so this is where it gets a bit tricky, but one of the most important things Im going to say is that Lyme Disease is essentially a clinical diagnosis. The CDC in America acknowledge the fact that serology isnt helpful as false negatives and false positives occur very frequently. Another misconception is that inflammatory markers are usually raised in Lyme Disease. Certainly the ones quoted for CRP and ESR may be are normal and usually are, and most cases overlooked. But I think that we can safely remove the question mark from that.
One of the other things to bear in mind regarding the diagnosis is that we are often dealing with a chronic condition which may have been there for years and years. This may have been relapsing, it come and goes. Almost always it is multi-systemic, and as a result there can be a huge diversity in the types and the severity of the symptoms.
Lyme Disease may present to any speciality and it may be present early on or it can occur years after a tick bite.
Further points about the diagnosis: Im not going to go into the CDC criteria, Im sure this will come up later on. Its based on a points system and most often we cant say for certain whether the diagnosis is there. The CDC criteria make it very important to have Erythema migrans but we know that thats not present in all cases and it is present in less than 50% thats what the ILAD guidelines quote, but it may be present in less than 10% , we just dont know.
There are very few other physical findings. Lyme Disease produces a mild encephalopathy and I think the concept of encephalopathy is more developed in the States. Encephalopathy is essentially a brain condition which can produce a diverse variety of symptoms from cognitive impairment to pure mental health symptoms. It is suggested that you should suspect Lyme Disease when arthritides (thats body pains) are present with mild encephalopathy.
How common is Lyme Disease in CFS and fibromyalgia? Well we dont know, but it may be very common. Other clues to diagnosis: if someone has a strong Herxheimer reaction with antibiotics- thats suggestive.
Erythema migrans. Its very variable, difficult to diagnose. Not all cases are central clearing (bulls eye rash) and histology isnt diagnostic. Its very rarely possible to see spirochaetes, certainly from reports. Common on legs, especially groins, Erythema migrans (EM) may appear anywhere in the body and come in multiples from multiple tick bites. It is quite common for the EM to occur a slight distance away from the tick bite. So these can clear or may be present for very long periods. They used to be called ECM or erythema chronica migrans.
Lyme Disease Action, Registered Charity Number 1100448, Registered Company Number 4839410
Home | Terms and Conditions | Site map