Dr. Bartley Cryan:

I mentioned that there is an active neurological service in Cork University Hospital. A number of people there have progressive neurological conditions and there will be quite long differentials for the potential causes of those conditions. If a treatable cause can be found, the onus will be on the neurologist and the investigating doctors to exclude as vigorously as possible all treatable causes. Lyme disease, being one of the treatable causes, would be vigorously pursued by the neurologist and the investigating doctors. It is not that the patient wishes he or she has Lyme disease; it is that the treating physician will vigorously check for any treatable condition in somebody who might otherwise have an untreatable relapsing condition.
Deputy Doherty mentioned that a person may have the symptom complex but not the antibodies. It is very difficult to explain scientifically, and it is difficult to prove it if one reviews the literature, how in the absence of the organism and an immune response to the organism somebody can get the symptoms that are part of that chronic Lyme syndrome caused by the organism. One has either an infection or an immune reaction to the infection. In either case one should be able to detect one or other of those. If there is no evidence of it detectable and the person has symptoms - the symptom complex is very broad and the list of things that can cause that is extremely long - one can rule out Lyme disease by the absence of the bacterium or by the absence of the body's response to it. Obviously, people who have been infected and are not treated can get chronic Lyme disease. On the issue of the use of the term chronic Lyme disease in the absence of antibodies or evidence of infection, there is no literature proving that it actually exists.
One wonders why some people, such as Deputy Brendan Griffin's constituent, is not responding to treatment, and perhaps she is not being treated for the right thing. He mentioned that 30% of the tests were false negatives. The vast majority of the false negatives occur early in the infection where the erythema migrans has come because one gets the erythema migrans in the first 30 days, usually in the second week. The antibodies only start to become positive around then. One may find that the antibodies are positive in week four and the rash is present in week two. It is a very characteristic rash. Any GP who sees this and recognises it will repeat the test about six weeks later and it will confirm it. When one takes that out of the count, the testing is quite accurate.
On the German laboratories, there are a number of laboratories. If one searches the Internet, one will find people in the US saying they will PCR and will detect Lyme disease in a whole series of body fluids. A professor in our department has been trying to do that with Lyme disease for the past two years without any success. The people I referred to will do that test at great cost to the individual. Many people are offering very questionable tests to people at great expense. The test used by the laboratory in Germany is a lymphocyte stimulation assay. The speaker at the committee's previous meeting, who seems to have enormous experience in Lyme disease, surprisingly has not written very much in the literature. I actually looked it up to find some of the bases for his suppositions. He has written only one letter but no scientific publications, which is extraordinary given his interest in the syndrome.
However, on the tests that he recommends and about which he is quite positive, the literature is very mixed on that particular test. It is a cellular version of what we do with antibodies so one is looking at versions of the same thing, but in other hands the sensitivity and specificity would suggest that it is not as good as the test we do. Germany seems to have a particular interest in all of this but where is the most Lyme disease in the world? New England. Where are the people who have the longest experience of dealing with lyme disease? The US. Where is the most serious Lyme disease, the specific borrelia burgdorferi? We have a variety of other species that are less pathogenic. The US. Whose advice would one be best advised to follow? The people who deal with it most often, the most serious forms of it and have the most problems with it and who actually diagnosed it, in the first place. We follow the IDSA guidelines, the CDC guidelines, the UK guidelines and the ECDC guidelines, all of which are singing from the same hymn sheet. In fact, it could be the same document.