We live two hours away, so we drove down here from the Netherlands. We made reservations in Grimbergen, which is a town just north of Brussels. The clinic is at the north end of Brussels, so we only have a 7 minute drive to get from the hotel to the clinic.
The hotel is adjacent to an elaborate thermal spa, but I can't handle being submerged in hot water, so we're avoiding that for now But there are rather nice accommodations in the area, including two great restaurants, one in walking distance for me, and one in walking distance for normal people.
So we had a 5 course Chinese dinner last night. This turned out to be a good thing, because I had to fast from 8pm until about noon. We slept well, in a room off of the main road and next to a very nice little park with a bunch of trees and a pond. And some very aggressive Belgian geese.
We left the hotel half an hour early, which turned out to be a good thing, because the traffic was pretty bad. Our 7 minute drive took us about 20 minutes. And we came to appreciate having arrived 10 minutes early, as the Belgian Monsoon Season began right after we got inside. Torrential downpours, huge gusts of winds, etc ... at a couple points it sounded like the skylight in the waiting room was getting pulled off of the building
I gave the woman at the front desk my contact info, paid for the visit itself (80 euros) and then went to the nurses' room. A guy had me breathe into a tube, then I got a glass full of water and lactose, and sipped that as my breakfast while I filled out a refreshingly pertitent symptom questionnaire. Every half hour for the next three hours a nurse would come into the waiting room to get new breath samples from the patients.
I saw Dr de Meirleir about half an hour after arriving, and it was a pretty short appointment. But he got straight to the point. He wanted to know about what medications I'm taking, and he already knew about Yohimbe and what its mechanism of action. He was also interested in my onset, and an episode 5 years prior where I had sudden onset of stretch marks (and new ones a few months ago) and right-sided numbness. He took a look at the stretch marks, and seemed fairly certain that it was from Bartonella. He wants me to come back in two months to discuss my results and whatever the plan is based on those.
So then we went back to the waiting room, where I played games on my laptop while waiting to see if the wind would remove the roof or not. There wasn't any unsecured internet access. Then I got called back into the nurses' room, with a list of tests Dr de Meirleir wants to run, and a brief explanation of what they involve. I'd already seen them discussed here, so nothing was too surprising. I turned down the VDR genetic test, since I already have pretty extensive results from 23andMe, and actual vitamin D levels are being tested as well (both forms). The food allergy test might be a bit redundant since I had one done about 18 months ago, but since I still have some symptom, I thought it might be good to get the test from a different location, as well as to see if any knew intolerances have popped up.
I got an explanation on how to do the urine and stool tests. Urine is a fasting one ("nuchter"), and one stool test needs to be done while I'm here and left with the clinic, so it can be sent off immediately. That one also had to be pre-paid to the lab which processes it, and we were given instructions on how to do that. And I was also instructed that the way to do a stool test is by covering the toilet lid with toilet paper (several layers?), pooping on it, and scooping it into container with the little spoon that is included.
The nurse told us that the price tag would be about 3,500 euros. I was expecting 2,000 to 3,000, so that didn't come as much of a shock. My parents are already going to help with at least 2,000 of that, maybe more, so we can manage the rest. We'll also try to get my Dutch health insurer to reimburse some of that.
Then I laid down on a table, and she came over to take my blood after a bit. She found the vein quite easily, and I barely felt it when the needle went in After she took several vials, I heard a lot more empty vials clanking around and asked how many there were. She responded that there were 15 in total ... but "they're just small ones" I was very light-headed afterward, and took my time standing up, and then spent the rest of my time in the waiting room sitting on the floor with my laptop.
When my last breath test was done, we went in search of food, and ended up at what I had thought was a tavern-like place with some basic meals. But it turned out to have very high quality food and the most amazing view imaginable, of the old part of the building as well as an ancient church above it on the hill. If you ever seem "hammetje" on a menu and think it's a little piece of ham - it's actually an entire leg chunk with a lot of meat. And it tastes heavenly Fortunately I was ready for a hearty meal after 16 hours of fasting, and 15 vials of blood lighter.
Then we returned to the hotel room where I crashed for a couple hours. Oh, and a small tree fell over outside our window while we were gone ... I was not kidding about the storm! High winds in the Netherlands from the same storm were over 150 kmh (94mph). The plan is now to rest until dinner time, partake of all-you-can-eat sushi a few doors down, and get to bed early again so we get up early again. Then off to do the 3 hour fructose test tomorrow, and deposit my fasting urine sample, and a stool sample or two. Then homeward!
The hotel is adjacent to an elaborate thermal spa, but I can't handle being submerged in hot water, so we're avoiding that for now But there are rather nice accommodations in the area, including two great restaurants, one in walking distance for me, and one in walking distance for normal people.
So we had a 5 course Chinese dinner last night. This turned out to be a good thing, because I had to fast from 8pm until about noon. We slept well, in a room off of the main road and next to a very nice little park with a bunch of trees and a pond. And some very aggressive Belgian geese.
We left the hotel half an hour early, which turned out to be a good thing, because the traffic was pretty bad. Our 7 minute drive took us about 20 minutes. And we came to appreciate having arrived 10 minutes early, as the Belgian Monsoon Season began right after we got inside. Torrential downpours, huge gusts of winds, etc ... at a couple points it sounded like the skylight in the waiting room was getting pulled off of the building
I gave the woman at the front desk my contact info, paid for the visit itself (80 euros) and then went to the nurses' room. A guy had me breathe into a tube, then I got a glass full of water and lactose, and sipped that as my breakfast while I filled out a refreshingly pertitent symptom questionnaire. Every half hour for the next three hours a nurse would come into the waiting room to get new breath samples from the patients.
I saw Dr de Meirleir about half an hour after arriving, and it was a pretty short appointment. But he got straight to the point. He wanted to know about what medications I'm taking, and he already knew about Yohimbe and what its mechanism of action. He was also interested in my onset, and an episode 5 years prior where I had sudden onset of stretch marks (and new ones a few months ago) and right-sided numbness. He took a look at the stretch marks, and seemed fairly certain that it was from Bartonella. He wants me to come back in two months to discuss my results and whatever the plan is based on those.
So then we went back to the waiting room, where I played games on my laptop while waiting to see if the wind would remove the roof or not. There wasn't any unsecured internet access. Then I got called back into the nurses' room, with a list of tests Dr de Meirleir wants to run, and a brief explanation of what they involve. I'd already seen them discussed here, so nothing was too surprising. I turned down the VDR genetic test, since I already have pretty extensive results from 23andMe, and actual vitamin D levels are being tested as well (both forms). The food allergy test might be a bit redundant since I had one done about 18 months ago, but since I still have some symptom, I thought it might be good to get the test from a different location, as well as to see if any knew intolerances have popped up.
I got an explanation on how to do the urine and stool tests. Urine is a fasting one ("nuchter"), and one stool test needs to be done while I'm here and left with the clinic, so it can be sent off immediately. That one also had to be pre-paid to the lab which processes it, and we were given instructions on how to do that. And I was also instructed that the way to do a stool test is by covering the toilet lid with toilet paper (several layers?), pooping on it, and scooping it into container with the little spoon that is included.
The nurse told us that the price tag would be about 3,500 euros. I was expecting 2,000 to 3,000, so that didn't come as much of a shock. My parents are already going to help with at least 2,000 of that, maybe more, so we can manage the rest. We'll also try to get my Dutch health insurer to reimburse some of that.
Then I laid down on a table, and she came over to take my blood after a bit. She found the vein quite easily, and I barely felt it when the needle went in After she took several vials, I heard a lot more empty vials clanking around and asked how many there were. She responded that there were 15 in total ... but "they're just small ones" I was very light-headed afterward, and took my time standing up, and then spent the rest of my time in the waiting room sitting on the floor with my laptop.
When my last breath test was done, we went in search of food, and ended up at what I had thought was a tavern-like place with some basic meals. But it turned out to have very high quality food and the most amazing view imaginable, of the old part of the building as well as an ancient church above it on the hill. If you ever seem "hammetje" on a menu and think it's a little piece of ham - it's actually an entire leg chunk with a lot of meat. And it tastes heavenly Fortunately I was ready for a hearty meal after 16 hours of fasting, and 15 vials of blood lighter.
Then we returned to the hotel room where I crashed for a couple hours. Oh, and a small tree fell over outside our window while we were gone ... I was not kidding about the storm! High winds in the Netherlands from the same storm were over 150 kmh (94mph). The plan is now to rest until dinner time, partake of all-you-can-eat sushi a few doors down, and get to bed early again so we get up early again. Then off to do the 3 hour fructose test tomorrow, and deposit my fasting urine sample, and a stool sample or two. Then homeward!