olliec
Senior Member
- Messages
- 111
- Location
- London, UK
I travelled from London to Brussels in mid November 2011 to see Prof De Meirleir. I did it with an open mind as I know some have found him to be very good, but others not. I finally received the tests and treatment regime details three months later. He's proposing amoxicillin, b12, probiotics, vitamin c, 4ME, and then in a couple of months to start gcmaf. That sounds ok to me. I'm certainly keen to try gcmaf and see if it helps. But this is where the problems begin...
I emailed "Kalida" who are apparently the supplier of 4ME. I had no idea what it was (no-one bothered to tell me), but I gather it's basically Nexavir. I expressed my concern about injecting an expensive substance from a company that apparently has no telephone, web site, or address, and operates through a Hotmail account (!). I've emailed them several times, but they ignore my emails. I've asked De Meirleir's clinic for help, and they have just shrugged their shoulders and referred me back to Kalida. I don't know how important this 4ME is to the treatment regime, but I will not be taken for a ride.
I was sent prescriptions for b12 and amoxicillin. My local pharmacy couldn't understand the belgian prescription, but said in any case they don't do enteric coated amoxicillin, so they can't fulfil it. I contacted De Meirleir's clinic, and it's taken them several weeks to reply to my email (after chasing weekly for about 4 weeks), and they just told me my pharmacy "should" be able to provide them. Obviously this doesn't help. It seems I might now have a source for the B12.
I'm so fed up. I've spent so much money travelling to Belgium, the tests, and then I'm simply sent a pile of papers and left to get on with it, with no support whatsoever.
Last year I met Dr Enlander and I decided to go to Belgium as it's closer than New York, but I'm starting to think I've made a bad choice. Dr Enlander replies to emails from people who aren't his patients, but it seems De Meirleir doesn't even reply to emails from people who ARE his patients.
Is mine a typical experience? Can anyone offer any suggestions about how I might proceed? If anyone is taking 4ME from Kalida I'd be reassured to know it is working out ok. Does anyone know if Dr Enlander has any patients in the UK on 4ME/Nexavir/GcMAF?
Ollie
I emailed "Kalida" who are apparently the supplier of 4ME. I had no idea what it was (no-one bothered to tell me), but I gather it's basically Nexavir. I expressed my concern about injecting an expensive substance from a company that apparently has no telephone, web site, or address, and operates through a Hotmail account (!). I've emailed them several times, but they ignore my emails. I've asked De Meirleir's clinic for help, and they have just shrugged their shoulders and referred me back to Kalida. I don't know how important this 4ME is to the treatment regime, but I will not be taken for a ride.
I was sent prescriptions for b12 and amoxicillin. My local pharmacy couldn't understand the belgian prescription, but said in any case they don't do enteric coated amoxicillin, so they can't fulfil it. I contacted De Meirleir's clinic, and it's taken them several weeks to reply to my email (after chasing weekly for about 4 weeks), and they just told me my pharmacy "should" be able to provide them. Obviously this doesn't help. It seems I might now have a source for the B12.
I'm so fed up. I've spent so much money travelling to Belgium, the tests, and then I'm simply sent a pile of papers and left to get on with it, with no support whatsoever.
Last year I met Dr Enlander and I decided to go to Belgium as it's closer than New York, but I'm starting to think I've made a bad choice. Dr Enlander replies to emails from people who aren't his patients, but it seems De Meirleir doesn't even reply to emails from people who ARE his patients.
Is mine a typical experience? Can anyone offer any suggestions about how I might proceed? If anyone is taking 4ME from Kalida I'd be reassured to know it is working out ok. Does anyone know if Dr Enlander has any patients in the UK on 4ME/Nexavir/GcMAF?
Ollie