We are hearing more and more about cases where the symptoms of Lyme disease become so overwhelming that the person feels that life is no longer worth living. We ourselves have met such patients, but fortunately they are still healthy today thanks to the treatment put together by the Foundation’s doctors.
However, there have been some who did not have a happy ending. A year ago, a young Canadian woman chose euthanasia because her life had become unbearable due to Lyme disease. If our views on the significance of Lyme borreliosis seem exaggerated, let us consider the multitude of such cases: if it is so easy to treat, why was it not treated? If the diagnosis was wrong, why was the real cause not found?
There is one case that continues to trouble me: two years ago, an article was published about a young man who had been treated several times for Lyme disease but still had symptoms, and in whose brain several strains of Borrelia were found. He would be 29 years old today, but he did not live to see that age because he committed suicide at the age of 23.
During his medical history, he repeatedly met the criteria for Lyme disease and sometimes for co-infections, was treated several times, and eventually ended up in psychiatric care because his Lyme disease was not treated due to the diagnosis of PTLDS (Post Treatment Lyme Disease Syndrome – synonymous with unsuccessful Lyme treatment).
What is outrageous about this whole situation is that the young man was able to commit suicide in such a way that he met all the criteria for his brain to be used by the institution treating him. Where did he get the knowledge to carry out his act in such a way that his brain would remain examinable and produce the appropriate paperwork for the ethics committee? Who helped him?
Beyond the anniversaries, a recent conversation reinforced my intention to write this opinion piece: a doctor is following the protocol for a patient suffering from similar symptoms, which is almost certain to fail. There is no need to prove the existence of neuroborreliosis, especially not with the outdated method required by the guidelines. It is enough to establish a diagnosis of “Lyme borreliosis with neurological symptoms and co-infections” and treat it. Why?
- Lyme disease has been proven to cause neurological symptoms, even in the early stages, as cytokines and chemokines produced by the infection cross into the brain parenchyma. They cause inflammatory symptoms without the presence of Borrelia.
- Serological tests have been proven to be insufficiently sensitive for detecting antibodies in the blood, so the diagnostic criterion that cerebrospinal fluid and serum antibodies must both test positive is virtually impossible to meet.
- There are newer, increasingly accepted tests, e.g. detection of CXCL13 (CXC type chemokine ligand 13 subunit) in cerebrospinal fluid, but its sensitivity is also questionable in many cases.
- Co-infections can further complicate the neurological symptoms of Lyme borreliosis. For example, in the case of Bartonella, there have been cases of co-infection where, after successfully treating both infections at the same time, the psychiatric and behavioural symptoms completely disappeared.
We therefore recommend that, instead of invasive spinal tap procedures, doctors should try to diagnose Lyme disease based on blood tests and treat the symptoms with a combination of appropriate treatments. A young woman has been visiting doctors for a year and a half with existing positive laboratory results and a Lyme-Bartonella co-infection. We hope she can hold out until she receives treatment.
