Tuesday, 14 November 2017 12:39

Addressing patient questions after a media attack on German Lyme clinics

Written by
Rate this item
(28 votes)

After the broadcast of the documentary 'Undercover in the German Lyme clinics' on Dutch TV, many patients and their families were left with questions or concerns. As the Danish reporters of the original documentary called 'Snyd eller Borrelia' did not allow for the other side of the story, we collected these questions and asked the Medical Director of one of the German clinics that was attacked to address them. An interview with Dr. Carsten Nicolaus, founder and head of the BCA clinic in Augsburg. 

"Snyd eller Borrelia was a pre-scripted very mean piece of journalism, which seems to have been purposefully set up to frame German Lyme experts". Dr. Nicolaus

What is BCA’s approach to Lyme diagnosis and treatment?

Dr. Nicolaus: at BCA we offer both conventional antibiotic treatment as well as treatments with naturopathic and herbal antibiotics. Those treatments are guided by measures to strengthen the immune system of the patient, to fight inflammation - which the EliSpot / LTT markers are showing us - and to fight pain.

This approach is basically the approach ILADS (International Lyme and Associated Diseases Society) is following in the United States. I have been in contact with the US-ILADS medical and scientific society from the beginning and I’ve been the first European who has become member of the ILADS board. The ILADS Lyme guidelines meet the 2011 internationally accepted evidence-ba

sed standards set by the US Institutes of Medicine (IOM).

LADS is critical of the IDSA-guidelines promoted by the CDC in the USA. These IDSA guidelines do not meet the standards of the IOM, were deleted from the National Guidelines Clearinghouse and were specifically mentioned as a case of bad 'evidence based' guidelines. But still they are used as policy in most countries in the world, supported by the outdated and limited ICD codes of the World Health Organisation (WHO). 

This is why there are still too many medical boards out there who think that it’s enough to give a Lyme patient antibiotics for two or three weeks. They think, if this dosage doesn’t work, it’s not Lyme or they think there is no chance to cure or at least help the patient with antibiotics. According to my experience of 25 years and the experience of a lot of other Lyme experts globally, this is absolutely the wrong assumption.

What about diagnosis?

Dr. Nicolaus: Lyme diagnosis is a clinical diagnosis, triggered by symptoms and supported by several tests. This is the case with most diseases. A Lyme diagnosis is not based on a mere test result, as the IDSA wants to make us believe. There is NO test out there yet, which can for sure diagnose whether someone has Lyme or not. The officially recommended ELISA test often fails to provide accurate results - especially in the late stages of the disease. The EliSpot tests show whether the patient has been in contact with the infection, but not necessarily whether the patient feels ill because of this.

Every test has its weaknesses and strengths. So it is important that a doctor is experienced is on this and knows how to implement and interpret a whole range of such tests. Unfortunately, the ELISA is too often false negative. But the 2nd stage of the official tests, known as the Western Blot / Immunoblots, are also recommended by us.

At BCA clinic, we put a lot of hope and research on PCR tests now – because if the symptoms are present and PCR shows a significant number of bacteria, the correlations are very strong. With PCR we get a close and very reliable picture of the co-infections as well.

Why, in your opinion, is there so much fighting about Lyme disease and treatment? 

Good question. There is a long-standing international network that invented and patented the highly unreliable ELISA-test. There is a lot of money being made off the ELISA-test. Leading members of this group are now the main 'suppliers' and 'expert witnesses' of the voices who want to discredit any competitors with Lyme diagnostic technologies.

Often these 'experts' who are quoted in those reports, have in real life never even tried to treat a Lyme patient, nor have they had successes in this. Most just claim to say, they know how it DOESN’T work and recommend to send patients they can’t heal into psychological or psychiatric treatment.

What Borrelia and Co-Infections patients need to support their health is joint research on diagnosing and treatment and a thorough differential diagnosis, with the best panel of tests available. In case of a Lyme diagnosis they need antibiotics and holistic help, so that their body can recover. Not the other way around.

After losing the infection and the pain, any dark state of mind and fear caused by the pain usually disappears very quickly. Almost all patients with mental health problems that we successfully treated for Lyme and coinfections, had resolutions of mental health issues after their bodies recovered. I can say this with certainty.

What is BCA’s recovery rate?

We use a Quality Management system to both track treatment results as well as to provide our patients with the best available support during their treatments. Even though we mostly get the patients who were undiagnosed and untreated in the mainstream system, we see that out of nine patients, six fully recover, three improve and only one is not responsive to treatment. 

What we didn’t know for years, but had been found just out some time ago, there are for example people who for genetic reasons don’t respond to certain kinds of antibiotics – just to give one probable reason. Or sometimes patients have two illnesses and Lyme is not the one causing the main symptoms.

This can happen in some single cases, of course and without a crystal ball no one can know in advance. 

What happened with the Danish TV-report? There are rumours that they accused you of not granting them access to the lab and of testing healthy people positive.

This is very easy to answer. From the first moment we started with the interviews – after my team had shown them the whole clinic, the lab, the tests and explained everything - it became been clear they were not interested in answers, but were only seeking confrontation. They came up with single cases, but I’d never talked about these cases, because they were not my own patients.

Even if doctors would know the details, in Germany and probably also in the Netherlands, they are not allowed to talk about patients without their permission. A doctor who ignores this doctor-patient confidentiality will lose his license immediately in Germany. So of course we were not able to answer for those two reasons. And when trying to explain this, the reporters cut those answers. This made us look as if we’d been trying to hide anything, which was ridiculous.

The main 'fake patient' they’ve sent to BCA lied about his symptoms (we checked the files), yet he confirmed he had been bitten by a tick and fell ill afterwards. So what else should a good doctor do other than believing him and suggesting a treatment? It was just meant to trap both us as well as the other German doctors and labs, so the script was built up that way.

Their other healthy colleagues with the test blood partly lived in areas where many ticks are infected. So it’s possible they have a latent, sub-clinical infection. I have understood that the Danish lab refused to make their serological test results public, when requested by the Danish patients to do so.

Of course only ill people with really significant, constraining symptoms are treated; not all people who are just positive in any test. But unfortunately the reporters had no interest in all those explanations, which would have changed their story completely. Whatever we’d said, they had their opinion ready and cut it in the way it suited them.

Even some of the patients who were quoted as the 'victims' tried to step back from the report, when they saw how one-sided the material had been cut and what was cut out. They felt much better after treatment, but the broadcasters didn’t let them share that side of their stories. 

We don’t know whether the ILADS patient-centered treatment guidelines - that meet the IOM 2011 internationally accepted standards - are the only way Lyme can be successfully treated. We support research in various directions and we also run a lot of research in our own lab. But we’ll continue to do our best and currently the ILADS treatment guides are the best to our experience, because one's best is the only thing a doctor and a person can do. That is what doctors swear to do, when they swear on the Hippocratic oath.

In the Dutch edition of the broadcast, professor Kullberg of the Dutch Lyme Expertise Center implied that the German labs refuse to cooperate in international scientific research. Is this true?

Dr. Nicolaus: “The more we started to know about lyme and other vector borne diseases, the more questions appeared the same time, BCA has over the years set up a research department, called “BCA research”, focusing on Lyme and other vector-borne diseases. This department is performing basic and applied research on developing new methods or substantially improve  diagnostic methods in the fields of direct detection of the pathogens ,  the immunology of the disease and epidemiology. It is cooperating with various institutions in Europe and worldwide.

Major projects are:

On Epidemiology:
- Investigation of the frequency of pathogens and non pathogenic organisms  harbored by ticks by deploying latest molecular technologies e.g. NGS,
- long term survey on Borrelia and co infections in ticks in the Augsburg area

On Patomechanisms of Borrelia
Molecular and morphological investigation of the pleomorphic forms known to occur in Borrelia to understand and to open new therapeutic approaches.

On Diagnostic tools and Serology BCA research is working on:

  • Improving the culture techniques for Borrelia, including optimizing processing of human and animal material  such as biopsies, CSF , blood, synovial fluid and directly from ticks, etc
  • Developing new and improving molecular approaches for direct detection of Borrelia and tick borne organisms  in human and animal material by improving extraction methods and evaluation of methods for sensitivity and specificity. Molecular methods deployed are conventional PCR, qPCR, nested PCR, sequencing.
  • Developing test methods for urine to detect Borrelia
  • Additionally to improve and massively reduce costs of lyme and co-infection antibody detection, BCA participates as a leading partner in the EU funded project Hilysens I and II. The objective is to develop an highly sensitive, micro-biochip for antibody detection in small blood volumes and multiplexed for the common tick borne diseases.

BCA research is also cooperating with veterinarian university departments to investigate Digital Dermatitis , a major problem of hoofs in cattle  and found to be associated with Treponema spp. A possible similarity to Morgellons disease is under investigation.

BCA is working on immunological characterizing patients by profiling various cytokines and inflammatory markers before and during therapy. Several methods are employed e.g. Facs scan analysis of peripheral cells for surface markers or gene expression.

BCA has set up and cares for a biobank for material related to tick borne diseases which is used for various research purposes.

Why are the costs of treatment so high?

Yes, we are very sorry that Lyme patients - different to for example cancer patients - have to pay for their bills on their own. At BCA we stick to the German Official Scale of Fees wherever possible, so we are not more expensive than a regular hospital. Some patients even manage to get some services paid by their insurances, but most need to pay out-of-pocket.

Insurances have 'red flagged' Lyme in the 1990's, due to high treatment costs. This is why both the insurers and the IDSA, to whom large sums of money was paid to create the current guidelines that deny the seriousness and length of the disease, are now sued by a group of patients for anti-trust violation and racketeering in the USA. 

As long as Lyme is framed like this by powerful actors in the health system, Lyme patients unfortunately will have to pay for a lot of life saving support out of their own pocket. 

Additional information

After the original Danish broadcast, BCA issued a public statement which can be found here

The Danish makers of the documentary are reported for supporting human rights violations at the United Nations.

Tabitha Nielsen, who was actually recovering because of her Lyme treatment before the original broadcast was published in 2016, is now dying. In this movie clip you can hear her explain how TV2 cut out how she actually recovered from her treatments. 

The Nymph d'Or awards are notified to delete the documentary from their list of award nominees.  

InterviewerHuib Kraaijeveld

About On Lyme

We focus to share stories that matter on this website. You can sign up for the On Lyme Newsletter to receive updates on new publications. 

If you want to support our work, your donation is highly appreciated.  

Would you also like, rate and share this article in order for more people to get this information? 

 

 

Read 2737 times Last modified on Thursday, 22 February 2018 14:05
Huib

Huib Kraaijeveld

Initiator On Lyme Foundation