Dr. Carsten Nicolaus is one of the leading European specialists in the diagnosis and treatment of Lyme disease. For more than 30 years he has dedicated himself to the study of this pathology and to direct patient care. Now, it collaborates with public and private organizations around the world that want to gain knowledge or deepen in Lyme and other vector-borne diseases as well as those that want to implement effective diagnosis and treatment protocols. Dr. Carsten Nicolaus is the president of the Scientific Committee of the Dr. Ángel Bueno Gracia Foundation – SOS Lyme.
You are an international reference in the diagnosis and treatment of Lyme and other diseases caused by a tick bite. What makes Lyme disease so special?
The complexity of the illness is what makes Lyme Disease so unique. It is reasonably easy to manage in the acute stages but becomes much trickier in chronic stages. It can present itself with many different symptoms and complaints and has in fact become known as the chameleon of medicine. Specific symptoms for Lyme Disease are rare and certain skin conditions and chronic fatigue are amongst the only “accepted” Lyme symptoms by the authorities. These symptoms can however also be seen in many other health conditions too which doesn’t make diagnosing easy.
Why is it so difficult to diagnose?
Long and extensive training is required to learn about and understand clinical conditions. These are much more important than any diagnostics or lab tests. Tick born diseases in general require a good understanding of diagnostic tools in order to get all the required information from diagnostics and testing.
Diagnosis can be very challenging because of multiple different unspecific symptoms. There is no “one fits all diagnostic” option, and we cant rely on serology because 50% of Elisa tests are innacurate.
It seems that the European authorities are not aware of the importance of current and future Lyme. Do you think this is so? Why?
Yes I think this is correct because all awareness in the past has been spent mainly on acute stategy because for a long time chronic lyme was seen as a rare finding and considered to be a waste of time to investigate any further. Acute is not challenging but chronic is a big issue with th amounts of new patients being diagnosed every year. 20% of acute are expected to become chronic cases.
In health, prevention policies are essential. Can preventive measures be taken when we talk about Lyme?
Living in high endemic areas and being exposed to ticks or other blood suckers increases the risk of getting one of the tick born diseases. Some “tick controls” should be adhered to and consideration should be given to things like wearing the right clothing, using repellants and checking our clothes and bodies carefully after outdoor leisure activities in risky areas.
An accurate and timely diagnosis is definitive in diseases of this type. In what state is this issue? Have it advanced in recent years?
Even in acute stages where patients have visited clinics or hospitals directly after the tick bite, it is not unusual for them to get either no treatment at all or treatment that is not appropriate. The treatment is often too short because practitioners continue to ignore new guide lines.
Chronic stages are much more challenging because the disease is masked by other health conditions which don’t always get dealt with because of the wrong treatment options. Nevertheless a lot of advances have been made in diagnostics in recent years. After we have learnt about the inaccuracy of serology, we have tried to introduce new methods. Tests like PCR testing and T-cellular testing have become mandatory to be able to offer the best diagnostics.
From our point of view, specialized Lyme education seems very important. What is your point of view on this?
I would definitely agree and we need to spread more awareness by educating doctors as well as patients who need some basic knowledge in how to proceed in the event of getting bitten by a tick. Doctors should be trained to know about all diagnostics options and treatment approaches.
Does Lyme treatment require specialized centers for diagnosis and treatment?
It shouldn’t but without them patients would be lost because it is not easy to diagnose or treat the illness and most cases, especially complex cases, need specialized doctors and services.
Would Lyme education at European universities be interesting?
It is definitely important to achieve a high level of trained doctors and this should be part of their medical training, particularly in high endemic areas. It would be great for all doctors to have some knowledge but as mentioned previously, complicated cases will probably need more specialised doctors and centres.
Besides the university education in Lyme, do you think it is necessary to make the disease known to the entire population to facilitate early detection and thus prevent so many cases from becoming chronic?
This is essential, the word needs to be spread to achieve higher awareness worldwide to avoid so many patients landing up in chronic stages.
As Chairman of the Scientific Committee of the Dr. Ángel Bueno Gracia Foundation – SOS Lyme, what role do you think the Foundation should play in the fight against Lyme?
To spread awareness in Spain about potentially serious infections diseases. Patients should be given some basic knowledge and doctors should be much better prepared to deal with chronic and acute stages.
To initiate more research to optimize diagnostics tools which are still very weak and for improving treatment options for patients.
To provide an understanding that this is not just a national problem but in fact an international problem as well with over 100 countries now recognizing that they are facing real challenges with Lyme disease and its co infections.
Collaboration in research and science should be mandatory in future.
And finally, do you think there is hope for people with Lyme disease? What is your message in this regard?
In a career with over 30 years of treating Lyme patients, I have seen the majority of patients achieve a good outcome but only when treatment approaches are based on evidence medicine. My message to patients would be that it is not a lost case if they are treated by a well trained lyme specialist and that they have a good chance of improvement and even full recovery. It has to however be accepted that in the majority of cases this cant be done in the short term and that long term treatment is inevitable to achieve the best results.
