The treatment

The treatment consists of four cures with Penicillin G and Hydrocortisone which is administered intravenous. It is an existing treatment which is administered for the disease Neurosyphilis since the 80’s and of which the side effects are known. In the Netherlands, this treatment has already been applied successfully on several ALS-patients.

Results, but not recognized.

The first results of this treatment are very positive. Three patients experienced an improvement in muscle power, swallow ability and speech ability. In the history of ALS treatment, those results have never been achieved before. Two out of three patients have been stable for six months and one patient has been stable for ten months. All three of them are experiencing a better quality of life.

Unfortunately, it’s not self-evident that ALS-patients qualify for this treatment. In the Netherlands it’s a standard procedure that the effects of treatments are tested in a clinical trial before it can be administered. It will take three to five years before a clinical trial is completed. As you’ve read, that is my maximum life expectancy.

Fight against time

I don’t have time to wait for this. The SEVBI foundation is pleading to administer this treatment off label because the results are so positive that it cannot be concealed. After many fights, frustration and battles I’ve started with this off-label treatment in July 2017 and the first results are very promising. My swallowing ability has returned to 100% and my speech ability and muscle power in arms and legs has improved. Before the treatment I couldn’t drink a glass of water without choking. Now I can drink a cup of coffee again.

At the end of October, I’m starting my second cure. If this is financially possible at least.

‘For me, a cure for ALS will never come. But with this treatment I’m hoping to become stable and enjoy my family for as long as I can, so my children can get a chance to make memories with their dad.’