Health

Chronic Lyme disease does not exist, says expert

Professor Miłosz Parczewski. Source: Independent Provincial Public Integrated Hospital in Szczecin
Professor Miłosz Parczewski. Source: Independent Provincial Public Integrated Hospital in Szczecin

Only five percent of tick bites result in infection, late-diagnosed Lyme disease is curable, and scammers offering long-month experimental antibiotic therapies should be avoided, warns Professor Miłosz Parczewski, the National Consultant for Infectious Diseases.

Last year, 25,244 cases of Lyme disease and 659 cases of tick-borne encephalitis were confirmed in Poland. Even though statistically only every 20th tick infects with spirochetes of the genus Borrelia, and Lyme disease in humans is quite easily curable, this disease causes fear and provokes disputes in the scientific community. Infectious disease specialists, the medical self-government and the parliamentary health committee protest against experimental forms of therapy. In April this year, the Provincial Administrative Court in Warsaw dismissed the complaint of one of the medical entities and agreed with the opinion of the Patient Ombudsman, who warned that the use of repeated antibiotic therapy in the treatment of Lyme disease was inconsistent with the state of medical knowledge and dangerous for patients.

PAP: Are we getting more afraid of Lyme disease? Are there more cases of infection?

Professor Miłosz Parczewski: Recently, there have been many reports about new ticks, tick-borne diseases and changing epidemiology. These changes are not major, but the problem can be described as 'future-related'. The main reason is climate change - it is warm, dry, we have frost-free winters. The fact that people often spend time in forest areas increases the risk of arbodiseases (diseases transmitted by arthropods, primarily ticks). Remember, however, that only approximately 5 percent of tick bites result in Lyme disease infection, even if the tick itself is infected. And Lyme disease is curable. We know how to diagnose this disease and treat it effectively!

PAP: So where does such a high overdetection of Lyme disease come from? Apparently, the suspicion of Lyme disease is confirmed in only 10 percent of patients referred to specialists,.

M.P.: Lyme disease is diagnosed based on the clinical picture (the most common early symptom is erythema migrans) and serology, i.e. the presence of antibodies in the blood. If the clinical picture is typical and antibody tests are positive, the diagnosis is simple. But if, for example, the erythema is not typical in its appearance, i.e. increasing in size - like a buffalo's eye, spreading waves on the water surface, or is located in the popliteal or hairy area, and does not have a characteristic rim, it may be a problem with diagnosis. Sometimes a tick bite is only a bite, a local reaction that does not exceed 3-5 cm, not a Lyme disease infection. In addition, we have other clinical forms, such as neuroborreliosis, myocarditis, and arthritis, which often pose a clinical challenge.

PAP: Will the serological test give a clear answer?

M.P.: Serology, i.e. the presence of antibodies in the blood, may persist for years after correctly treated (and therefore inactive) Lyme disease. Overdiagnosis is often due to the fact that the antibody test is an immunological test. It does not differentiate between immunological memory, i.e. past Lyme disease, and active Lyme disease. We have ways to make the diagnosis more probable, but it is not a test that detects the spirochetes themselves, i.e. directly detects bacteria.

A positive test result is often associated with non-specific ailments that are not Lyme disease: joint pain, for example due to degeneration; headaches, and these are cluster pains; neuropsychological symptoms, depression, deterioration of concentration, chronic fatigue. And, unfortunately, there are medical units that treat these non-specific symptoms with antibiotics for many years, not understanding or not willing to understand that antibiotics do not treat antibodies.

Antibodies are a function of our immune system and antibiotics will not make antibodies disappear. It is our immune system that has to extinguish this response towards the spirochete, which sometimes takes months or years. Long-term or multi-month antibiotic therapy has not been confirmed by research as effective, necessary or harmless antibiotic therapy! After all, we know that antibiotics lead to selection of drug-resistant bacteria and cause population damage - widespread administration of antibiotics results in more antibiotic-resistant bacteria and we will not have anything to treat people with in the future. Long-term, repeated administration of antibiotics may lead to permanent liver, pancreas and kidney damage.

PAP: Why is there such a serious disagreement in the scientific world regarding the treatment of Lyme disease that some doctors offer months-long antibiotic therapy for, as well as alternative methods of treatment, e.g. with ozone or oxygen in a hyperbaric chamber?

M.P.: The source of the problem are the two sets of recommendations in the USA: the IDSA (Infectious Diseases Society of America) recommendations, and the ILADS (International Lyme and Associated Diseases Society) recommendations, created by doctors and patients who had Lyme disease.

PAP: Only IDSA operates in accordance with international standards recognized by the Polish Society of Epidemiologists and Infectious Disease Physicians?

M.P.: Yes. It operates in accordance with the principles of medicine based on scientific knowledge and facts. In accordance with the principles of good clinical practice. The problem with the ILADS recommendations is that some of the assumptions come from in vitro studies, i.e. far, far pre-clinical studies. And these laboratory-level tests are being transferred to the 'clinic', which is not a correct way. The entire structure of evidence-based medicine - this applies not only to infectious diseases, but also to cardiology, neurology, immunology, gastrology, for example - is that we have a clinical trial of a new drug, which is based on data from multi-phase clinical trials on humans, with evaluation of safety and effectiveness. Laboratory tests do not provide such knowledge, so they must not be translated into therapeutic procedures.

PAP: What would you tell a patient who has been 'treated' for Lyme disease for several years?

M.P.: There is no such thing as 'chronic Lyme disease'. Lyme disease is classified as early and late. I advise patients to consult a wise infectious disease specialist who is up to date with the guidelines, especially those published by the Polish Society of Epidemiologists and Infectious Disease Physicians.

PAP: There is no adjective 'wise' on doctors' business cards, but in offices or on websites there are certificates, diplomas, training confirmations, etc. Seeing a diploma of the International Lyme Disease Society in the office, the patient gains confidence rather than have doubts.

M.P.: I agree. In today's world - of electronic media, social networking sites - it is very difficult to distinguish knowledge that is based on facts from knowledge that is fake news, in this case fake treatment, incorrect therapy. I do not have a ready answer on how to deal with this. As a national consultant, I try to ensure that the training of infectious disease specialists is at the appropriate level. And that everyone knows how to treat Lyme disease, for how long, and when to stop.

When treating Lyme disease, we must rely on facts, not fake news. I see the problem not only in doctors, but in patients' trust. And in understanding that Lyme disease is not the only disease in the world. That very often non-specific ailments can be a 'mask' of depression, multiple sclerosis, degenerative joint disease, and autoimmune diseases. It is not that doctors refuse treatment to anyone! We want treatment to target the actual disease. First, do no harm! This is our banner in medicine. Listen to medical authorities. Educate. I would like these messages to break through: firstly, that Lyme disease, especially early Lyme disease, is a curable disease in up to 98 percent of cases. Secondly, antibiotic therapy should last between 14 and 28 days. At the moment there is even a trend to shorten it. If someone offers months of therapy, it is worth asking what data the experiment is based on?

PAP: Patients usually ask, but is there a sufficient response from the medical community to the ILADS recommendations, which provide for long treatments with a mixture of antibiotics?

M.P.: There is a response. Recommendations must be developed on the basis of clinical research. They have their own strength. If a clinical trial does not exist, we try to ensure that such a recommendation is accompanied by an appropriate comment that it is based on very weak evidence, or that it is not implemented at all.

PAP: The ILADS recommendations may seem to be a 'rescue' for those who were diagnosed with Lyme disease late, several years after being bitten by a tick.

M.P.: And here we must be precise: there is no chronic Lyme disease, but there is late Lyme disease, in the form of neuroborreliosis, arthritis or atrophic dermatitis. It may occur even several years after the tick bite. Late Lyme disease is more difficult to diagnose and slightly more difficult to treat. But it is curable. Instead of oral antibiotics, intravenous antibiotics are administered for a maximum period of one month. We do not use ILADS methods and theories, because it is not a rescue, but a therapy for which the patient can pay with their own health.

PAP: In these more difficult cases, is the therapy according to the IDSA recommendations also repeated, if necessary? Are antibody tests performed multiple times?

M.P.: Yes. If we have any doubts, we always suggest treatment. With control of the serological effect. And with the selection of appropriate antibiotic therapy. So that repeating it after some time makes sense. With an appropriate antibiotic, most often administered intravenously, penetrating deeper into the joints and central nervous system. I would like to emphasise that deaths from Lyme disease practically do not occur. There are a few cases a year, only those related to myocarditis, which are practically not recorded in Poland.

PAP: Lyme disease is curable, but not in one hundred percent of cases. Can we live with it for several dozen years?

M.P.: Such cases are very, very rare. Lyme disease has a very wide sensitivity to many antibiotics and people receive these antibiotics 'along the way' due to other indications, so even if they have not been treated specifically for Lyme disease before, they can still be diagnosed with past Lyme disease. There is no such thing as seronegative Lyme disease, i.e. one with negative antibody tests. And we have also verified such cases several times. However, one can be infected with Lyme disease multiple times - a previous illness does not provide immunity to subsequent infections.

PAP: How many patients with suspected Lyme disease come to the Independent Provincial Public Integrated Hospital in Szczecin?

M.P.: In the infectious diseases clinic, we consult up to 40-50 people a day with suspected or diagnosed Lyme disease, which is about 200 a week. Some of them only come for check-ups because they are, for example, forest workers who are repeatedly exposed to ticks and should be checked once every six or twelve months. We have several early Lyme disease cases a week. Such patients primarily go to primary care physicians.

PAP: So if I see a tick, I should not go to the emergency room?

M.P.: It is not necessary. You can try to remove it yourself. Tick twisters are available in pharmacies. You should disinfect the bite area, but do not apply e.g. steroid ointment so as not to darken the image. You need to observe the bite site. The erythema characteristic of Lyme disease begins to enlarge between the third and fifth day, up to a month. If nothing appears, case closed. If EM rash appears and exceeds the diameter of a five-zloty coin, see a primary care physician. You can get your first antibiotic from your family doctor. If you report a few days after the bite, no tests for Lyme disease are performed because they will be negative. The immune system's response lasts two to four weeks.

PAP: Most bites do not result in infection?

M.P.: The risk of disease transmission depends on the feeding time of the tick embedded in the skin, the duration of drinking, and on what the tick has been infected with. As a rule, the risk is 5 percent. We recommend that if someone has multiple tick bites, they should contact their family doctor.

* * *

Professor Miłosz Parczewski is the National Consultant for Infectious Diseases, chief physician for infectious diseases at the Independent Provincial Public Integrated Hospital in Szczecin; head of Department of Infectious Diseases, Tropical Diseases and Acquired Immune Deficiencies at the Pomeranian Medical University in Szczecin; President of the Polish AIDS Society and Vice-president of the European AIDS Clinical Society.

Interview by Tomasz Maciejewski (PAP)

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