The costs

Because the treatment is not (yet) recognized, health insurers refuse to reimburse the costs.


De total medical costs per cure of 21 days are: € 6.234,-

These costs do not include:

  • Consultation/doctor prescriptions
  • Determine CBC (complete blood count)
  • Placing a midline catheter or PICC line
  • Monitoring services
  • Homecare and infusion necessities

Lyme disease.

Apart from ALS I’m also diagnosed with Lyme disease. It is important that I also get treated for this disease after completing the four Penicillin G and Hydrocortisone cures.

This particular Lyme variant is very persistent and harmful and requires a long-term treatment of 1 to 4 years.

The costs of the Lyme treatment

In the Netherlands, doctors follow the CBO-guidelines which dictate a maximum antibiotic treatment of 30 days. This is not enough to cure from Lyme disease. A treatment accordant the ILADS guideline is the only option to cure from Lyme disease. This treatment also won’t be reimbursed in the Netherlands. Once again the healthcare system is failing a chronically ill patient. A full ILADS treatment costs about 50.000 euro.

To pay for the ALS and Lyme disease treatments, I’ll need an amount of 100.000 euro.