Notes by András Pál Bózsik, Lyme disease laboratory specialist
I recently heard some information from an old teacher and friend of mine. He said that more than 70 per cent of publications in medical literature are based on unrepeatable or false data. One of the most famous cases of this was when it was discovered that the data underlying Alzheimer’s research had been deliberately manipulated, and subsequent publications were only able to repeat it through manipulation. Decades of research and drug development were based on this data, and the person who was found to have falsified it was even allowed to keep his job. A similar example is that the experiments underlying homeopathic “medicines” are also based on a benign error, yet they have not been retracted even after decades. Dr Csaba Szabó also presents some similar cases in his book.
This is an astonishing number, and at first glance it is difficult to believe. However, for those of us who are active in Lyme disease research and have been working on various diagnostic and therapeutic solutions for decades, this is unfortunately not surprising.
In the field of Lyme disease, there are a particularly large number of people who cling to long-disproved theories and are unwilling to even consider new ideas. In most countries, including our own, Lyme disease recommendations refer to articles written in the 1980s and omit important evidence. In the case of pneumonia, it might be acceptable for someone to rely only on publications from 20 to 30 years ago. But in the case of a disease that most doctors did not know about when they were university students because it had not been described or identified, it should be a basic requirement to follow the latest scientific information. If they do not do so, then at least they should not interfere with the work of those who try to diagnose and treat based on the latest medical findings.
Unfortunately, many patients suffer because their doctors – whether out of good intentions or resentment – refuse to accept the latest scientific findings. I myself have encountered cases where someone deliberately provided false information or specifically tried to discredit another researcher. This is not uncommon in the field of Lyme disease.
Our task, as those who want to diagnose, treat and analyse laboratory results based on the latest information, is to persevere even when some doctors and patients turn away and say, “This method is not accepted.”
The Lyme Borreliosis Foundation’s initiative fills a gap because it analyses the latest articles and news by topic in Hungarian.
I have read more than three thousand recent articles on Lyme disease. I know exactly how much the perception of the disease has changed even in the last five years.
Take diagnostics, for example, where the role of serology has changed dramatically over time. Initially, this was the only testing option. Later, however, the criteria were narrowed (at the so-called Dearborn Conference), thus excluding 50% or more of patients from the possibility of diagnosis. In addition, the term “seronegative Lyme borreliosis” was banned. Then came another twist: many people today say that serology is useless.
Why do I personally think that it makes a lot of sense? The results of IgM, i.e. the early immune response, are indeed significant, and the results of IgG, i.e. the late immune response, can also be interpreted. The doctor can use these to the patient’s advantage. In Lyme disease, we often see true IgM positivity in untreated patients, even in the late stages of the disease, and residual IgG in successfully treated patients. Serological tests now very rarely show false-positive reactions. But interpreting them is a separate task: why does a patient in the late stage have a “fresh” IgM reaction? Why does IgG reactivity disappear quickly after even a single dose of antibiotics, and why can a much broader IgG reaction persist even years after successful treatment? The real question is how to interpret the results, not how to deny them. Of course, it is easier to dismiss something as false data than to think about why it might be true.
The same is true for the detection of Borrelia in the blood. The latest results show that it can indeed be found, but until now it has been searched for using the wrong methods and in the wrong place – in the wrong “fraction” of the blood and using methods that do not take into account the rapid genetic change of the pathogen. Today, several types of direct diagnostics can detect the presence of the pathogen in almost all body fluids.
Until this information reaches the average treating physician, we must fight and help patients struggling with Lyme disease.
András Pál Bózsik
