Why a critical view is needed
Recent media releases about Lyme Disease (LD) or Lyme Borreliose (LB) vary in tone and content. Some still claim that (chronic) Lyme does not exist and is basically a marketing strategy for ‘quacks’ who intend to rip off their poor patients. Some warn against the fact that accredited medical specialists are attacked for trying to do their job and promote new laws to protect them. Numerous others warn about a current worldwide increasing plague of ticks and the likelihood that you can get infected by Lyme and suffer from longterm health issues.
Yet all media quote official statistical sources as truthful. In my opinion the media should be much more critical, since now people need to do the math themselves and mostly lack relevant information needed to critically review the underlying assumptions. In Europe, Lyme is still classified as a ‘rare disease’, while the current estimates of new Lyme infections are already higher than each individual category of cancer cases.
Current Dutch Lyme estimates
The Dutch estimates are that each year 23,500 acute Lyme infections take place, while 1,000 - 2,500 people stay ill - which is called ‘disseminated Lyme’. Dr. Kees van den Wijngaard, senior Epidemiologist Gastro-enteritis and Zoonoses & project leader of the Centre for Infectious Disease Control, Epidemiology and Surveillance of the RIVM kindly replied to my information request. He also sent me the report about the societal costs of Lyme Disease in the Netherlands.
From the report: “In the United States the LB incidence is 329,000 cases per year (107/100,000 persons). In the Netherlands and some other areas in Europe the LB incidence is increasing, and the geographic distribution of I. ricinus ticks in Europe is expanding. European-wide incidence estimates are complicated by large heterogeneity in surveillance data, but available estimates range from 65,000 to more than 200,000 LB cases per year. In the Netherlands, the total LB incidence is almost 25,000 cases per year (145/100,000).”
According to a 2013 article in the Huffington Post however, already in 2008 official counts of EM’s in Germany alone were 753,000 cases. According to Armin Schwarzbach, the scientific director of a certified laboratory in Augsburg, “you can double the number of infections, which means 1,500,000 fresh infected Borrelia patients each year in Germany.” This reasoning behind his statement will be clarified in this blog article, but you will already notice that the official German numbers are already over three times higher than the estimated total of infections in the whole of Europe.
So the total maximum estimates of 200,000 new annual Lyme infections in Europe seems to be incredibly low and arbitrary. Countries like Denmark are currently witnessing an explosion of ticks, with a 50% EM ratio after a bite. A 2006 report by the WHO stated that although “LB is the most common vector-borne disease in temperate zones of the northern hemisphere, the reported number of cases is largely underestimated as case reporting is highly inconsistent in Europe and many LB infections go undiagnosed”. Not much seems to have changed in ten years.
From the RIVM's original report I learned that the current statistics are derived from a questionnaire sent to all 10,250 Dutch General Practitioners (GP’s). The questionnaire inquired about the number of consultations for tick bites and diagnoses of Erythema Migrans (EM) in 2014, and the size of their practice population. How many GP’s responded was not mentioned, neither if the statistics were corrected for missing responses. Dr. van den Wijngaard confirmed that positive test results were not used as an indication; neither for acute nor disseminated Lyme.
A recalculation based on challenged assumptions
In the recent article ‘Lyme Disease Epidemic Increasing Globally Due to Climate Change and Human Activities’ it is mentioned that “In fact, less than half of those infected may develop the EM rash (Schuttelaar et al., 1997; Stonehouse et al., 2010; Berger et al., 2013).” This means that if 23.500 EM’s are reported, the estimated Lyme infections should be at least doubled to 47,000 cases.
Independent 2011 Dutch research also found that 40% of the 833 participants with an EM missed it, so they will not be reported. This leads to an upgrade to at least 78,333 estimated acute infections.
Yet another assumption is that all EM’s are recognised by the GP’s nurses. The Dutch GP Klein Haneveld told me that this is not the case amongst the doctors he has trained. He learned about Lyme, when he discovered that his own daughter had had it for 14 years. The movie is subtitled in English (click on 'settings' icon in the YouTube screen to select the language)
Finally the classic EM ring is only one of the many possible skin rashes after infection. The CDC reports seven different ones. Asking specifically for the EM thus limits the possible outcome. The CDC claims that 70% of the infections is followed by a classic EM, so in the calculation it should again be adjusted to roughly 112,000 cases.
Exclusion of other ways of infection
The RIVM also indicates on their website that congenital Lyme infection is unlikely. “Based on animal research and in analogy with other diseases caused by spirochetes (syphilis) there is the possibility that the Borrelia can be transmitted from mother to child. Regardless, the odds of human congenital Lyme disease is rare - even in endemic areas - and the relationship between incidental reported birth deficits and LB during pregnancy is unclear.” I find this strange given the fact that at least fifteen peer-reviewed studies have been published, in which this vertical transmission is proven to exist. Often with fatal consequences for the newborn.
Worldwide morbidity estimates are based solely on the tick population, limited to one sole species, as in this Dutch example. So could the truth of the matter be simply that nobody has any idea about the actual numbers of Lyme infections? This week I received a picture of an EM ring on the arm of a ten year old boy, who was bitten by an infected mosquito.
His father will not necessarily go to the GP, because he has learned about the standard response of most doctors: “I don’t believe in Lyme. No tick, no infection. It must be stress. Here is one day of doxycycline, which should be enough. Lyme is a fashionable disease”. And so on.
I know many people who claim to have been infected, with a clear EM ring, after the bite of a horsefly, mosquito, flee or another biting insect. GP’s will mostly claim that it cannot be Lyme in the absence of a tick bite and these people will not be included in any statistics. GPs now confuse the simplified criteria used for a statistical count with the diagnostic value of them, to the expense of many ill people.
This makes me wonder if using GP’s as the only source of data collection is enough to give a credible forecast of the possible prevalence of Lyme infections. If ticks were the only possible vector of Lyme, the tick count done by the University of Wageningen would set a maximum. They have calculated that 1,5 million Dutchmen, from which 300,000 bites in urban areas, get bitten by ticks each year. They also found that 20% of all ticks in the Netherlands are infected.
Yet with so many uncertain factors, basing a veritable prediction only on one isolated and limited indicator (an EM after a tick bite of one sole tick species) does not make much sense to me.
The only actual certainty we seem to have now is that Lyme infections are underreported and that the media is not critical enough to ask questions about the validity of these official numbers, but instead report them as real.
One thing concerns me though. It is often claimed that the current treatment of acute LB with short-term antibiotics is 90% effective. Could it be that this claim is only based on epidemiological data, as 25,000 / 2,500 = 10%? To my knowledge the first Dutch prospective study ever only recently started and cannot be interpreted yet. If so, this can’t hardly be called ‘evidence or patient based’ medicine.
Is Lyme an epidemic?
To my surprise I could not find any quantitative definition of an epidemic on serious websites for public health information. The only thing I could find was a vague definition: “a disease is called epidemic, when it occurs more often than normal”.
To appreciate the seriousness of Lyme it seems to make most sense to compare it with cancer, which is called the number one disease worldwide. In 2016 the number of new cases of cancer in the Netherlands were - according to estimates by the INKL - 108,400. These were divided in skin cancer (15,800), intestinal cancer (15,400), breast cancer (14,600), lung cancer (12,200) and prostate cancer (11,100).
So it can be noted that even the uncorrected official number of 23,500 new Lyme infections is about twice the amount of each individual category of cancer cases. When corrected to at least 112,000 new annual acute infections, the amount of Lyme cases is actually larger than all new cancer cases combined.
Due to the ongoing political controversies and the low validity of the current Lyme tests, there is no way to be conclusive about the actual number of latent, disseminated, late stage, chronic or persistent cases of longterm health issues due to earlier Lyme infection. My bet would be that this number is also higher than assumed.
It should be noted that compared with other health issues of similar proportions, Lyme has received hardly any attention; if attention is expressed in available research budgets. The image by Lyme Stats, which is used with permission for this blog, shows a similar absurd situation in the USA. In the USA Lyme is also more prevalent than breast cancer.
My new questions to the RIVM
These are the questions I will now mail to dr. Van den Wijngaard of the RIVM.
- what number is used by the RIVM to define an ‘epidemic’?
- is Lyme still a non-reportable disease in my country and if so, why is it called a 'disease of consequence' by the WHO and the ECDC, and why is it being tracked by the International Panel on Climate Change?
- can you at least double your estimates based on the latest research (50% absence of EM) or increase the numbers to 87.300 for the 40% missed EMs or to 112,000 when taking the missing rashes into account?
- how many GP’s out of 10,250 responded and are the statistics corrected for the missing respondents? If not, can you do so?
- have you made sure that GPs understand that the EM is only used for collection of statistical data and that the absence of an EM is not a valid diagnostic criterium to exclude possible Lyme infection (or another Borrelial infection in general, such as Relapsing Fever)?
- when are other ways of transmission, such as by different entropots or as an Sexually Transmittable Disease, going to be properly researched? Many positions are now simply based on 'expert opinions', in the absence of actual research.
- is the current Dutch reported percentage of treatment failure based on prospective / follow up studies (perhaps by the John Hopkins university) or is it simply derived from the current statistical estimates?
- why isn't the government giving information on well documented and mostly lethal transmission of Lyme from mother to child?
On a positive note
Unlike other countries such as France or the USA, the Dutch government does not ‘maximize’ the number of Lyme infections that are allowed to be reported. In Europe, Lyme is still classified as a ‘rare disease’.
According to EURORDIS a disease or disorder is defined as rare in Europe, when it affects less than 1 in 2000 people. The current official Dutch number (145/100,000) already translates to 1/689 in one single (small) European country, so that this European definition of Lyme is remarkable - to use an understatement.
Because of our ongoing work to update the current World Health Organisation's ICD 11 codes for Lyme Borreliose, the size of the actual Borreliose pandemic will become more visible over time. You can discover how this medical elephant has remained systemically hidden in the global living room, educate yourself, stop being patient, take action and - in short - help Shift the Lyme Paradigm.
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Author of “Shifting the Lyme Paradigm", chairman of the On Lyme Foundation and founding member of the Ad Hoc Committee for Health Equity in ICD11 Borelliose Codes