The reason the NVLP started this so-called Citizens Initiative was to force the Dutch Congress to put Lyme on the political agenda. More funding had to be allocated to research, information and the creation of a national Lyme expertise center where chronic Lyme patients would be helped. The Citizens Initiative was signed by over 71,500 people (on a population of then 15-16 million).
Together with the Ombudsman Foundation the NVLP made a survey, resulting in the report 'Lyme Disease, an underestimated problem' based on the input of 833 people with chronic Lyme. Although the research was intended as a statistical basis for the Citizens Initiative, the Dutch Health Council discarded it and claimed only to take the report into account for their considerations.
Outside of the Netherlands it has only been mentioned in the book for caretakers, Shifting the Lyme Paradigm, in which the most important finding of the research is mentioned: the fact that 89% of the included 833 people and who received the standard antibiotics treatment for Lyme, remained as ill as they were or even got worse.
The 2011 rapport in the Dutch press
In December 2011 the Dutch national Newspaper Trouw published an article headed "Doctors know too little about Lyme". It was a helpful summary of the results of the Ombudsman survey. Unlike our current digital survey, the 2009 survey was a paper questionnaire. Out of 1900 people it was sent to, 833 Lyme patients responded. The article opens with:
"Lyme Disease is an underestimated problem and Medical Doctors know too little about it, claims the NVLP. A survey that has been published today proves this. The survey inquired into patients' experiences.
You have a headache, feel tired, has aches in your muscles and joints. You go to your doctor, who states: "must be the flue. It will pass by itself" and sends you home. But it does not pass by itself. The symptoms remain and get worse. So you go back to your doctor. Who thinks: "this is strange indeed, that flue should have been gone by now. So maybe it is something else." Your doctor has read something about Lyme Disease, a disease that is transmitted by the bite of a tick that is infected with the Borrelia bacteria. So he asks if you can remember a tick bite. Yes, you reply, now that you mention it, I had one a few months ago. And? Did you see a reed ring on your skin, just after the bite? No? Sure? Well, in that case you cannot have Lyme. With this statement your doctor concludes the conversation.
A few months later. Your symptoms are now much worse. Next to the ones you already had, you now suffer from memory loss and have trouble to concentrate. You now also have migraines, nerve pains, numb spots and you lose control over your muscles. At your urgent request the doctor does do a blood test. The result is negative. Other diseases also cannot be found. Conclusion of your doctor: it must be in your head, so go and see a psychiatrist.
This advice leaves you in shock. You feel abandoned and tries your luck with a German doctor. This doctor uses another type of test. Guess what? Lyme is found beyond any doubt. You got a long treatment with antibiotics.
Fortunatley, but the evil is already done. Your discovery of Lyme is too late, at the cost of many physical and emotional damage. For months you did not work anymore. Odds are low that situation will change in the near future, because recovery is predicted to take at least a year.
This is just one example of what happens to someone who had the misfortune to be bitten by a tick. Someone with a similar story could also end up in a wheelchair, in bed for the rest of his / her life or even worse."
This is a summary of the main conclusions of the research report.
Conclusion 1: in practice the current information for doctors in different from reality; concerning the time it takes to get infected after a tick attaches itself, the way to remove ticks, how to act when a red (EM) ring shows up and how to recognize first symptoms of Lyme. The fact that the doctor does not recognize the red ring or the first symptoms, increases the risk of the development of chronic Lyme.
Conclusion 2: people often need to search for months or years to find proof of Lyme Disease. Requests for tests are refused, people get other diagnoses and the tests produce varying results. This all leads to a time to diagnosis that is too long, which has a negative influence on treatment effectiveness and elading to a detoriation of health of the long term.
Conclusion 3a: of all people who received the standard treatment for Lyme, 89% claims to have only temporarily benefitted from it and had partial, permanent, later or increasing complaints. This shows that Lyme can evolve after standard treatment.
Conclusion 3b: people get no or hardly recognition of permanent symptoms after standard treatment. This causes problems finding regular follow-up treatment in the Netherlands. Therefore people are forced - at their own expenses - to go abroad or to rely on alternative health-care in the Netherlands. Both appreciation for and trust in the regular healthcare in the Netherlands are low amongst Lyme patients.
Conclusion 4a: the consequences of being chronically ill due to Lyme are big: on average there is a loss of labor productivity of 54% and 10-30% of the participants needs help on areas such as housekeeping, mobility, living circumstances and legal, at their own expenses. The percentage of people with legal problems is possibly higher, because young adults are underrepresented in this study. Experience shows that especially this group deals with legal issues often.
Conclusion 4b: the consequences of Lyme for school children or students are big: for more than half of them the disease leads to substantial learning problems and high absence numbers. For more than 25% of these young people the disease has lead to ending their school or studies. The survey furthermore shows a consistent lack of understanding and (official) support for this group.
Conclusion 5: the complexity to recognize Lyme Disease leads to a prolonged diagnosis with severe consequences for the wellbeing of the patients and especially those with the symptoms that are most hard to recognize (see conclusion 2).
In May 2014, 5 years after the petition started, Dutch Congress held a plenary meeting about Lyme, in which Health minister Schippers promised that Lyme expert center would be established within one year. At the end of 2015, Lyme patients are still waiting for it to happen. Several hospitals are now claiming this status (read: money).
The active Dutch Lyme patient and blogger Berdien Renes recently did her own research among 238 people with Lyme on a closed Facebook group. Of them, 95% said they are not treated by any 'expertise center'.
Trouw artikel 17-12-2011 (in Dutch)
Onderzoek Ombudsman (Dutch pdf)
Shifting the Lyme Paradigm; the Caretakers' Guide through the Labyrinth (Priceless e-book)