I am booked in to see Prof. de Meirleir in January

snowathlete

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Thanks Alex.

You're right, it is expensive. But, it is cheaper for me to travel and stay for a night or two in Belgium and be tested in Belgium than to see someone in the UK.
Further, I can't remember the fee, but it's around 40-70 Euros to see KDM. Thats a lot cheaper than I thought it would be. To see someone at the Breakspear in the UK for example is more than £200.
The test prices in the UK are about double that of RedLabs in Belgium!

Still, it is a lot of money. :eek:
At least I will get lots of bonus points on my credit card...
 

snowathlete

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Thanks San Diego. The travel does worry me, but my dad is coming with me, which will definately make it a lot easier.
I am doing it mostly by train, Eurotunel.
 

snowathlete

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Thanks Nielk. Will do. I have plenty of time to prepare information that might be helpful. I plan to update my blood test results, print those out. I also want to think about which blood tests i should ask for. I know he will have his own idea, and there will be a lot of overlap, but i want to think it through anyway. So, any suggestions are welcome.
 

Sushi

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Just booked this today. Looking forward to having some tests and at least trying something.

Got to sort out travel and hotel. I already have my passport.
Congrats! Most patients stay here: http://www.eurovolleycenter.be/opening_E.htm

It is a 20 minute walk to the clinic (if you choose) or they will drive you over and pick you up for 4 Euros. They will also let you use their fridge and freezer, and if you talk to the cook, will try to cater for weird diets.

It is a sports center, incongruously, but they also have about 50 rooms and since they are close to the clinic, cater to clinic patients. Very basic accommodation but OK. Contact me in chat sometime and I'll tell you more.

You can take a bus or a taxi there from the train station. I'm not sure where the Eurostar comes in, but one of the main train stations has a commuter train to Vilvoorde, and from there it is a short bus or taxi ride to the clinic. I think the bus from the Vilvoorde train station that goes past both the Eurovolley and the clinic is # 47, but I'd have to check to be sure.

I need to go over sometime soon. When I make arrangements, I'll let you know.

Best wishes,
Sushi
 

justy

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Hi Snowathlete - this is great news! i am also planning on going in the spring. I just need to save a bit more money first. How much are you reckoning on for testing etc (without travel)? I have heard it can run up to £2,000 on tests maybe a bit more or maybe less. This is how much i am aiming to save, plus extra for travel and accomodation.

I'm glad you have someone to take you. My husband is taking me and we will probably leave the kids with their grandma for 4-5 days and drive there (eurotunnel).

I would also be interested to hear others suggestions for testing ideas and what to discuss with him when there.

all the best, Justy x
 
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Hi Snowathlete - this is great news! i am also planning on going in the spring. I just need to save a bit more money first. How much are you reckoning on for testing etc (without travel)? I have heard it can run up to £2,000 on tests maybe a bit more or maybe less. This is how much i am aiming to save, plus extra for travel and accomodation.

I'm glad you have someone to take you. My husband is taking me and we will probably leave the kids with their grandma for 4-5 days and drive there (eurotunnel).

I would also be interested to hear others suggestions for testing ideas and what to discuss with him when there.

all the best, Justy x
Wondering- does the clinic do the testing (draw) or do they send you somewhere else?? Here, (US) many do not even do the blood draw. You have to handle on your own with another Dr.. Please let us all now how you do. Hope everything works out great for both of you.

San Diego
 

Sushi

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Wondering- does the clinic do the testing (draw) or do they send you somewhere else?? Here, (US) many do not even do the blood draw. You have to handle on your own with another Dr.. Please let us all now how you do. Hope everything works out great for both of you.

San Diego
It is a full clinic with a lab, IV room, and two nurses, they are really good with blood draws--which counts for a lot of us.

Sushi
 

snowathlete

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Oh, congratulations! How long a trip is it (hours) to get there?
Good question madietodd. It'll take about 5 hours on the eurostar from Wiltshire to Brussels.
Not sure how long it'll take to get to the hotel yet.
It's one heck of a long way for me, I think I will find it quite overwhelming, but it should be fairly straightforward and I have someone else with me to deal with problems if they come up. I'm determined to try something.

Thanks Sushi. I'll check this out, and talk to you about it. Handy knowing someone who has already been there.

How much are you reckoning on for testing etc (without travel)? I have heard it can run up to £2,000 on tests maybe a bit more or maybe less. This is how much i am aiming to save, plus extra for travel and accomodation.
Hi Justy, Like you, I'm expecting it to cost up to £2000. I checked and they said I can refuse any test I dont want or can't afford. On the whole I'm going to take their advice though, just good to know that i can put a limit on it. I see this as money well spent because with so little really known for sure about the illness, I can at least get some facts about how the illness is affecting my body.

They are really good with blood draws--which counts for a lot of us.
That's good to hear Sushi. I had a horrible fainting experience a couple of years ago so I am keen to avoid that. The staff we spoke to seem really nice.

I found other people's experiences on here really useful, so I will definately do my best to report back and inform people about the experience.
 

Sushi

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Good question madietodd. It'll take about 5 hours on the eurostar from Wiltshire to Brussels.
Not sure how long it'll take to get to the hotel yet.
It's one heck of a long way for me, I think I will find it quite overwhelming, but it should be fairly straightforward and I have someone else with me to deal with problems if they come up. I'm determined to try something.
...That's good to hear Sushi. I had a horrible fainting experience a couple of years ago so I am keen to avoid that. The staff we spoke to seem really nice.
How about 17 hours! And that is just to the Brussels airport! A killer trip for sure.

From central Brussels, you can take a bus to the clinic or the hotel I mentioned for 1 euro and about a 45 minute ride. Taxis are very expensive there, but of course would be faster.

For the blood draw you can lie down on one of the IV "beds." I won't let anyone draw blood unless I am lying down. If you have to fast, pack a lunch and bring some teabags or whatever you drink. There is hot and cold water available to make drinks.

Best,
Sushi
 

snowathlete

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17 hours...man that sounds rough, I don't know how you do it. The 1 euro bus sounds great. Need to save where I can!

Thanks November girl, and everyone else for the support!
 

snowathlete

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trains, eurostar and hotels all booked. I feel shattered having spent most of the day looking at options and arranging everything.