Method of Treatment
The fourth course ended on 26 September. You can read the report of 10 October below.
As previously mentioned, the method comprises four 21-day courses of treatment during one year. The courses consist of administering daily eight-hour intravenous infusions of a combination of a high dose of penicillin G and hydrocortisone. An assessment of the results is carried out following each course, before proceeding to administer the next. The positive effects of the first course of treatment in December 2017 persisted until mid-February 2018, after which the symptoms returned very gradually. The second course, which started on 6 March, was again very positive! The symptoms in terms of speech, swallowing and lung function were effectively reduced. At the end of April the voice and peak flow (lung power) started to slowly deteriorate again, but Jan was in better shape than before the first course of treatment. Just before the start of the third course, speech, swallowing and breathing functions were still better compared to 5 December 2017 when the first course of treatment began. The progression of the disease has therefore been successfully counteracted as far as these symptoms are concerned. The third and fourth course have also been completed. Read below the reports of the courses of treatment.
Full details of the treatment can be found at www.sevbi.org SEVBI is an abbreviation of the organisation’s name in Dutch, Stichting voor Effectief Voorschrijven Buiten Indicatie (Foundation for Effective Off-label Prescription). On the basis of trials previously performed with a small group of patients, the organisation concluded that the treatment proved efficacious in relieving the symptoms of dysphagia (difficulty swallowing) and dysarthria (difficulty speaking) in particular, and to a lesser extent the pulmonary and muscular functions. The former symptoms are the ones from which Jan suffers the worst.
The first signs of Jan’s illness became manifest in August 2016, when he encountered difficulty in speaking and partial paralysis of his diaphragm, which prevented effective abdominal breathing. Jan underwent a course of acupuncture in June 2017, with a view to reactivating his diaphragm. He began using respiratory support at night at around the same time, allowing the diaphragm muscles to rest sufficiently to enable him to breathe adequately throughout the day.
The entire story, from the initial signs to the manifestation and development of Jan’s illness, can be found under the header “My story”
Please click “here” to view an example of the treatment’s efficacy. Meanwhile, Jan himself has experienced the efficacy of the treatment himself. Below you can find the reports of the first and second courses, which have also been sent to the insurer.
Harlingen, 28 January
“I myself have undergone the first course of treatment (5-26 December 2017) and have experienced only positive effects, especially in terms of swallowing, speech and respiratory function, which now last longer than one month after treatment. In the period from a few days after the start of the course to the present day, I only choked once, whereas it was almost daily before the course. It is a great relief if you can just eat and drink without fear! My peakflow (coughing power) was measured weekly by the physiotherapist and improved from 2.85 to 3.7 and even 3.8 last week, as measured during a visit to the ‘centre for artificial respiration at home’ in the hospital UMC Groningen. Before the treatment I had to regain breath for two hours after a quiet bike ride of a few kilometres. Now it is fifteen minutes. For the first time since August 2016, I have been able to lie on my back for a short period of time without getting short of breath, and in the side position for a longer period of time without oxygen or artificial respiration. Since the first week of treatment, I have been able to speak louder, longer and more audible. Not only the caregivers can testify to this, but also friends, family and colleagues. “Hey Jan, you’ve got your old voice back”, was a remark of a colleague I’m calling weekly. At the end of November, just before the course started, I had reduced my social contacts to a minimum, because I couldn’t talk any more. My partner Denise did the business phone calls. After the first week of the treatment I was able to speak audibly again and also in the evening. It’s great if you can just talk to people and take phonecalls yourself. The quality of life is almost 100% again. The medication has already given me a few fantastic months. The positive effects are expected to decrease slowly (based on experiences of others) and the symptoms will gradually worsen again until the second course of treatment (6 March)”.
Harlingen, 28 March 2018
The second course was again very positive. The symptoms that returned after mid-February have been effectively reduced. Swallowing and breathing are OK again! Voice improved greatly after the first week, as also noted during a monitoring visit on 12 March. In the third week decline of voice due to poor condition, but Jan reported on Wednesday 28 March that his voice was much better again!
Harlingen, 1 July 2018
The third course has ended. Positive effects on swallowing and speech function and improvement of the peak flow. I am glad that the third course was successful too. I have been enjoying the positive effects for almost seven months now and am sure I would not have had the quality of life I have now without the courses. The second and third course showed less spectacular results than the first course, but were still very worthwhile. The courses mainly have effect on the so-called bulbar symptoms and lung function. Loss of strength in hands, legs and neck has not been stopped, but may be delayed. Maybe the fourth course will also bring improvements. I am very grateful to everyone who has made this treatment possible!
Harlingen, 10 October 2018
The fourth course ended two weeks ago. This course had little result. After the first five days there were improvements in speaking, swallowing and lung strength, but they didn’t last very long. As far as these symptoms are concerned, I am back at the level of 5 December 2017, the start date of the first course, and so I have had 10 months of respite thanks to the courses. Other symptoms, such as loss of strength in hands, legs and neck have worsened, especially since mid-August. The courses appear to have less and less effect and the disease persists. Additional courses do not seem to make sense. Unfortunately there are still no other means to stop this incurable disease and so it remains to be seen how quickly the progression will proceed. On this page you will find regular updates. I think that everyone suffering from ALS/PSMA should have the opportunity to alleviate the symptoms with these courses. I have experienced the positive effects myself and find it unethical, not to say inhuman, that people with such terrible diseases are not given the option to try these courses.
Jan's treatment
The results of the courses are described below.
Interim report end of August 2018
Meanwhile, just before the fourth course of treatment (end of August 2018), the symptoms have worsened again. Speaking is very difficult, as is swallowing. The peak flow is fortunately still at the same level as a year ago before the first course, but other characteristic symptoms of ALS / PSMA have gradually worsened. The index finger / thumb grip is so weak that the turning of keys or loosening lids of pots, etc., with the left hand is no longer possible. One of the experiments to determine if you have ALS is whether you can walk on your toes and heels. Unfortunately, this is no longer possible with the left leg. Walking is now difficult. I felt this coming this past year, but the treatment has suppressed that symptom so far. I am very happy that thanks to the treatment I have been able to experience a good quality of life all this time. Hopefully the fourth course will bring relief and improvement again.
The starting date of the fourth course of treatment is 5 September 2018.
Efficacy of the fourth (and possibly last) course of treatment in terms of hand strength, lung strength, speaking, swallowing and other symptoms.
During the treatment every Monday and Friday hand strength and peak flow are measured under supervision of a physiotherapist.
Wednesday 5 September:
Hand strength: left 24, right 30 (strong decrease left)
Peakflow: 2,80
Voice: very unclear. Speaking is very tiring, especially in the evening
Choking: have to be careful. Cannot be distracted while eating or drinking.
Other symptoms: numb feeling in upper lip and feet back again. ‘Stiff’ feeling in the legs and muscle spasms and since mid-August I cannot stand on the heel of my left foot anymore. Walking is difficult. Thumb/index finger grip further weakened, especially left hand.
Friday 7 September:
Hand strength: will be measured monday
Peakflow: 2,70
Voice: still very unclear. Speaking is very tiring, especially in the evening
Choking: have to be careful. Cannot be distracted while eating or drinking.
Other symptoms: numb feeling in upper lip and feet back again. ‘Stiff’ feeling in the legs. No muscle spasms. Left foot functions slightly better. Walking is somewhat less difficult. Thumb/index finger grip the same.
Monday 10 September:
Hand strength: left 28, right 30
Peakflow: 2,80
Voice: still very unclear. Speaking is very tiring, especially in the evening
Choking: slightly better, but have to be careful.
Other symptoms: numb feeling in upper lip and feet. ‘Stiff’ feeling in the legs. No muscle spasms. Left foot functions slightly better. Walking is somewhat less difficult. Thumb/index finger grip the same.
Wednesday 12 September:
Hand strength: will be measured friday
Peakflow: 3,10 (better!)
Voice: more clear. Speaking is tiring, especially in the evening
Choking: no choking, but still have to be careful.
Other symptoms: numb feeling in upper lip and feet seems to lessen. ‘Stiff’ feeling in the legs. No muscle spasms. Left foot functions slightly better. Walking is somewhat less difficult. Thumb/index finger grip the same.
Friday 14 September:
Hand strength: will be measured monday
Peakflow: 3,10 (the same)
Voice: more clear. Speaking is less tiring.
Choking: no choking, but still have to be careful.
Other symptoms: numb feeling in upper lip and feet seems to lessen. ‘Stiff’ feeling in the legs. No muscle spasms. Left foot functions slightly better. Walking is less difficult. Thumb/index finger grip the same.
Monday 17 September:
Hand strength: right 30
Peakflow: 3,00 (somewhat less)
Voice: more clear. Speaking is less tiring.
Choking: no difficulties with swallowing, but still careful.
Other symptoms: no more numb feeling in upper lip, numb feeling in feet seems to lessen. ‘Stiff’ feeling in the legs. No muscle spasms. Left foot functions slightly better. Walking is less difficult. Thumb/index finger grip the same.
Friday 21 September:
Hand strength: will be measured monday
Peakflow: 2,80 (hopefully better monday)
Voice: more clear. Speaking is less tiring.
Choking: no difficulties with swallowing, but still have to be careful.
Other symptoms: no more numb feeling in upper lip, numb feeling in feet seems to lessen. ‘Stiff’ feeling in the legs. No muscle spasms. Left foot functions slightly better. Walking is less difficult. Thumb/index finger grip the same.
The starting date of the third course of treatment was 5 June 2018.
Effectiveness of the third course of treatment with Jan in terms of hand strength, lung strength and voice.
During the treatment every Monday and Friday hand strength and peak flow were measured under supervision of a physiotherapist. We also made voice recordings.
Tuesday 5 June:
Hand strength: will be measured friday
Peakflow: 3,00
Voice: It takes a lot of effort to speak somewhat audibly, especially in the evening.
Choking: have to be careful, especially with fluids.
Friday 8 June:
Hand strength: right 30
Peakflow: 3,10
Voice: It takes less effort to speak somewhat audibly, even in the evening.
Choking: have to be careful, especially with fluids, but swallowing is easier.
Monday 11 June:
Hand strength: right 34
Peakflow: 3,40
Voice: It takes less effort to speak audibly, even in the evening.
Choking: no difficulties with swallowing.
Friday 15 June:
Hand strength: right 33
Peakflow: 3,20 (hopefully better score next week)
Voice: It takes less effort to speak audibly, even in the evening.
Choking: swallowing OK.
Monday 18 June:
Hand strength: right 34
Peakflow: 3,30 (at least well over 3)
Voice: It takes less effort to speak audibly, even in the evening.
Choking: swallowing OK.
Friday 22 June:
Hand strength: right, will be measured monday
Peakflow: 3,20
Voice: It takes less effort to speak audibly, even in the evening.
Choking: swallowing OK.
Third course also brings some major improvements!
Effectiveness of the second course of treatment with Jan in terms of hand strength, lung strength and voice.
During the treatment every Monday and Friday hand strength and peak flow were measured under supervision of a physiotherapist. We also made voice recordings.
The starting date of the second course of treatment was 6 March 2018.
Monday 5 March:
Hand strength: Left 30 kg
Peakflow: 2,80 (back to square one)
Voice: speaking is very tiring, especially in the evening
Choking: have to be careful, especially with fluids.
And further: numb feeling in upper lip has not returned
Friday 9 March:
Hand strength: Left 30 kg, Right 34 kg
Peakflow: 2.80 (not yet improved, perhaps because of a cold)
Voice: only tiring in the evening
Choking: no chocking, but still careful
And further: no muscle spasms, no stiff legs in the morning!
Monday 12 March:
Hand strength: Left 30 kg, Right 34 kg
Peakflow: 2.90
Voice: better audible, less tiring in the evening
Choking: no choking
Wednesday 14 March:
Peakflow: 3.30 making progress!
Friday 16 March:
Hand strength: will be measured monday
Peakflow: 3.30 (improvement continues, hopefully next week even more progress!)
Voice: the same
Choking: no choking
Monday 19 March:
Hand strength: not yet measured
Peakflow: 3.50 (good progress!)
Voice: the same
Choking: no choking
Friday 23 March:
Hand strength: not yet measured
Peakflow: 3.40 (remains stable!)
Voice: a lot worse on Tuesday and Wednesday because of bad condition. After replenishing potassium deficiency a lot better!
Choking: no choking
Monday 26 March:
Hand strength: not yet measured
Peakflow: 3.40 (remains stable!)
Voice: gets better as condition improves
Choking: no choking
The second course was again very positive. Once again, many thanks to all those who made this possible!
The starting date of the first course of treatment was December 5.
Monday December 4th a 0 measurement was done:
Hand strength: 32 kg
Peakflow: 2,85
Voice: hardly audible, hardly any voice in the evening
Choking: several times a day (liquids)
Friday 8 December:
Hand strength: 30,5 kg
Peakflow: 3,50
Voice: better audible, more clear, also in the evening
Choking: no choking this friday
Monday 11 December:
Hand strength: 31 kg
Peakflow: 3,6
Voice: better audible, more clear, also in the evening. Return of higher pitches
Chocking: no chocking this monday
Vrijdag 15 December:
Hand strength: will be measured monday
Peakflow: 3,6
Voice: better audible, more clear, also in the evening. Return of higher pitchest
Chocking: no chocking
Other improvements: no more numb feeling in upper lip anymore, less numb feeling feet soles, no muscle spasms, no stiff legs in the morning.
Monday 18 December:
Hand strength: 32 kg
Peak flow: 3,7
Voice: more clearly audible, clearer sound, also in the evening. Higher pitches have come back.
Choking: no choking
Other improvements: numbness left side of upper lip has disappeared, numbness of the soles of my feet has decreased, no muscle spasms, no stiff legs in the morning.
And…
For the first time in one and a half year I can lie on my back for a while without getting short of breath!
Friday 22 December:
Hand strength: will be measured wednesday
Peak flow: 3,6
Voice: more clearly audible, clearer sound, also in the evening. Higher pitches have come back.
Choking: no choking
All of the other improvements are continuing!
Christmas Day was the last day of the first course of four. The results are so positive that it has been decided to continue with the second course on 6 March!
A great big thank you to everyone who has made this possible!
Contact
Email info@janfirst.nl
Phone +31 645729511
T.a.v. Denise Junge
IBAN NL90ABNA0988293528
Achlumerdijk 18
8862AJ Harlingen