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In Belgium to see Dr de Meirleir

Discussion in 'ME/CFS Doctors' started by Valentijn, Oct 28, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    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 :p 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. :eek: 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 :cautious:

    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 :cool: 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" :rolleyes: 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 :angel: 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!
    EMilo, Ema, anne_likes_red and 18 others like this.
  2. Lymelight

    Lymelight

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    Brussels, Belgium
    Never noticed Belgian geese were very aggressive. They must have been frightened by the storm :aghhh:
  3. Valentijn

    Valentijn Activity Level: 3

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    Nah, they wanted food, so they followed/chased us around the pond :rofl: Though the Egytian-Belgian Geese were much more polite and went for a swim instead.
    Lymelight likes this.
  4. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    Here's a list of what's getting tested.

    RED Laboratories:
    Pro-inflammatory cytokine panel
    Perforine
    Elastase
    Absolute CD57
    Absolute NK cells
    Soluble CD14
    C3A
    C4A
    Prostglanding E2
    VEGF
    Total antioxidant capacity
    Nagalese
    HHV6 - DNA?
    Candida - IgG
    Borrelia burgdorferi - PCR
    Bartonella spp. - PCR
    Borrelia burgdorferi, afzelii, garinii, spielmanii, bavariensi - IgG and IgM (immunoblot)
    Chramydia pneumoniae, trachomatis, psittaci - IgG and IgA/M (immunoblot)
    Yersinia - IgG and IgA/M (immunoblot)
    Bartonella henselae, borrelia burgdorferi, coxiella burnetii, rickettsia conoril - serum zoonosis screening
    FOB - Transf + lactof-calprot - stool
    Soluble IgA - stool

    infectolab:
    Borrelia - Elispot LTT (pre-pay)

    US BioTek Laboratories:
    96 General Foods

    Labo Medische Ontledingen (I think):

    ESR
    Hemoglobin
    Hematocrit + RBC
    WBC
    Formule
    Thrombocytes
    APTT
    CRP
    RA
    ANF
    Urine acid
    Total protein
    Protein electroporese
    Ferritine
    AST
    ALT
    GGT
    TSH
    25 OH Vitamin D

    ??:
    B cells - CD19
    T cells - CD2, CD3, CD4, CD5, CD8
    NK cells - CD16, CD56
    Activation - CD25, HLA-Dr
    Other - CD45

    ??:
    1.25 OH Vitamin D
    Immuno-phenotyping
  5. SanDiego#1

    SanDiego#1 SanDiego#1

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    SouthEast USA
  6. SanDiego#1

    SanDiego#1 SanDiego#1

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    SouthEast USA
    When is he coming to the US? Interesting Post.

    San Diego #1
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I know someone who is seeing him in the US in a couple of weeks but I don't know how long he will be here for.

    Sushi
    Valentijn likes this.
  8. snowathlete

    snowathlete

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    @Valentijn, thanks for the detailed description of your trip. Sounds good. Glad you avoided falling trees and the roof of the clinic remained in place! Hope you get some answers and can get better. Keep us posted how things go.
    justy and Valentijn like this.
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I had heard that Europe was getting some major storms. Glad that the roof stayed on the clinic and the tree missed your hotel room.
    Valentijn likes this.
  10. bel canto

    bel canto Senior Member

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    It does sound like northern Europe got blasted. What timing for your trip! Glad it all worked out for you, and thanks for posting the information.
    Valentijn likes this.
  11. JBB

    JBB Senior Member

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    Wow what a comprehensive list! Thanks for copying it all out for us. Very interested myself as I am considering seeing KDM.

    I recognize some of these tests (mainly the viral / bacterial ones) but most of the other are completely alien to me. What implications do these all have for treatment?

    Pro-inflammatory cytokine panel
    Perforine
    Elastase
    Absolute CD57
    Soluble CD14
    C3A
    C4A
    Prostglanding E2
    VEGF
    Total antioxidant capacity
    Nagalese
    +others!

    Haven't really got any idea what all these relate to (as well as many of the others)...some look like immune system I'm guessing? Some just look like random combinations of letters to me :confused:!

    Best wishes,

    J
  12. Thinktank

    Thinktank Senior Member

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    I've seen KDM last week and your list looks much similar to mine although i had to pay a bit more because i requested the checkup to be comprehensive as possible. Total for me +/- 5500 euro.
    RED labs blood + MSA stool test: 4090 euro
    Infectolab: 240
    In-clinic testing + US-biotek food panel: 350 euro
    Labo medische ontledingen + other stuff: ?? around 1000 i guess

    The turnaround time for the borrelia elispot is just 2 days so you better give them a call or send them an email for the result at the end of the week or early next week.
    Valentijn likes this.
  13. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    Day 2 was relatively uneventful. I took my urine sample when I got up at 6:30am, and was able to collect my stool samples at about 7am without any catastrophes.

    I did some reading on the internet, and it sounded like the most hygienic method is to coat something disposable with a lot of toilet paper, then poop into it, and scoop samples from that. I was in a hotel room, without a lot of options, so removed the top of a shallow tissue box I'd brought, and lined it with several layers of toilet paper. That worked quite well! :thumbsup:

    No mess, no smell, etc. The scooping into the bigger container (for IgA analysis I think), was difficult, because it's a tiny spoon and a relatively big container. The smaller container for shipping off to RED laboratories just needed one spoonful, but wanted it thoroughly crushed and mixed with the preservative, though it was a bit hard to reach the bits of the sample at the very bottom with the spoon.

    Oh well, they seemed happy enough when I took the samples into the nurses :p The smaller container came with an envelope for shipping, but we took it with us to the nurses, since they could probably send it to RED laboratories pretty easily since they were already sending a ton of blood there. Presumably it'll end up in the right place.

    Then I started the fructose test, which was identical to the lactose test, except that it tasted better. I felt like crap for most of the morning, either due to the fructose or my stool-collecting acrobatics. Sat on the floor again quite a bit.

    We were done with the breath tests at 11:30, then went to make an appointment for my followup visit with Dr de Meirleir in mid-January. I'll also be doing some sort of exercise test then.

    I then took my Yohimbe immediately, and was feeling better by the time we got lunch. I even managed to walk about half a mile to a belgian chocolate store ... up a hill as well! I'm not feeling any major effects yet, though I did get wiped out after lunch, and on the way home. It mostly felt like a "I lost a ton of blood recently" thing, rather than PEM.

    Then a two hour drive, and home again :D I took a nap, and felt pretty decent after that, though now I'm a bit bleary this morning. Though I did wake up early with a sore stomach, probably due to eating gluten for lunch yesterday.
    snowathlete, SOC, Sushi and 3 others like this.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Valentijn

    We could have a whole thread about the strategies and "stool-collecting acrobatics" of collecting in a hotel bathroom. :rofl:

    We are a very creative bunch--I approached it as an interesting puzzle! And the lab bunch seem easy-to-please on this issue.

    Sushi
    SOC, filfla4 and Valentijn like this.
  15. Fogbuster

    Fogbuster Senior Member

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    Thanks for your incredibly detailed description of your experience @Valentijn! Im sure eventually after more and more tests come back normal, I will delve heavily into my savings and make the trip from the UK. Btw I did my stool collection like previous april fools jokes. Put cling film across the loo! Much simpler method imo.

    Best wishes
    Jamie
    Valentijn likes this.
  16. Daffodil

    Daffodil Senior Member

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    you can see KDM in reno, too. i dont think they are taking insurance though, and first consult is $700 so belgium might be cheaper.
    Valentijn likes this.
  17. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Wow I really like some of the tests by Dr. Merleier. Good luck Valentijn!
    Valentijn likes this.
  18. roxie60

    roxie60 Senior Member

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    @Valentijn I then took my Yohimbe - what is this?


    Hope you get answers and dierection from your tests. Look forward to hearing about your progress.
  19. Valentijn

    Valentijn Activity Level: 3

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    It's bark (or a bark extract in the case of Yohimbine) which pretty specifically suppresses a gene which has been shown to be up-regulated in ME/CFS patients following exertion in a couple small studies.

    It takes care of my OI, magnesium, and gut-motility issues. It seems to have an impact on avoiding PEM as well, though my muscles are just as limited in what they can do. My resting heart rate has gone from 80-85 down to 70-75.
    roxie60 likes this.
  20. Thinktank

    Thinktank Senior Member

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    Europe + South East Asia
    Which gene does yohimbe suppress?

    Have you sent infectolabs an email? I bet your borrelia elispot results are ready by now.
    I also received most of the results from lab. medische ontledingen after a week, except cytokine subpanels 1&2 which have been sent to himmunitas.
    Valentijn likes this.

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