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My trip to see Professor De Meirleir (long post)

Discussion in 'ME/CFS Doctors' started by justy, May 17, 2014.

  1. justy

    justy Senior Member

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    Hi, this is a very long post, but I have decided to put it here, rather than as a blog as I think that way more people will see it - hopefully the information will be useful to others.

    As it is so long I have put in headings so that people who want to can just read that section, rather than wading through the whole thing.

    I arrived back from my trip to Belgium to see Professor De Meirleir on Tuesday night and have been mainly resting up since then, so haven’t been able to write up about my experience. Unfortunately I am still feeling very ill from the trip and today woke up with a horrible ‘depression hangover’ which I don’t get very often but it’s nasty when it hits and will hopefully only last a few days.

    I also have the nasty hit by a truck feeling every morning severely at the moment – it’s reminding me of how ill I used to be and also making me a little depressed that it may stick around for a while, but I am trying to be positive as the actual trip and clinic visit went so well.


    The Journey
    We drove to Belgium, through the channel tunnel so it was a long trip. As we live on the far West of Wales it is a 6 hour drive to the tunnel, then an hour boarding and travelling under then another 2 and a half hours the other side to Vilvoorde, where the clinic is. On the way we broke this up with a night’s sleep in London, but coming home we did it all in 1 day, after a busy morning in the clinic and that was definitely too much for me.


    The Hotel
    We stayed at the Eurovolley, where a lot of patients stay from all over the world. It was a very basic set of rooms in a sports centre (Oh the irony!) but it was a really nice place in terms of the friendliness and helpfulness of the staff and the use of the canteen for eating – the food was really good, but quite expensive.

    What I liked the most about it was that all the rooms and canteen/restaurant/bar are on one level so it was nice and easy to do everything, on the second evening I was too ill to eat in the cafeteria so my husband brought my food to our room with no problems. There is also free WIFI which was usually reliable.

    The only problem we had – and it was a big problem, was that our room (no. 124) was right above a noisy boiler/aircon unit thing which hummed very loudly all night, so the first night I only had about three hours of very broken sleep, and spent most of the night very distressed and trying to stuff toilet paper in my ears.

    My husband slept like a baby. This was really tough as if it is your first time at the clinic they want you there at 8 o’clock in the morning for breath testing, with fasting from 8pm the evening before until 11.30am.
    Before leaving for the clinic that morning we asked to swap rooms and luckily they were able to do that – we swapped to room 107 which was in a different corridor and that night I slept really well.

    The clinic is very near the Eurovolley so getting there is very easy and quick. We drove, but you could walk (not very scenic), or get the staff at Eurovolley to take you for a small charge.


    The Clinic
    When we arrived, after checking in with the receptionist I went to see the nurse. She asked me to breathe into a large syringe device, before giving me a large glass of Lactose solution to drink. After that you sit in the waiting room and the nurse comes in every half an hour until 11.30 to get you to breathe into the device again. The next day the drill is exactly the same re fasting and breath test, but instead they give you Fructose to drink.

    The waiting room was quite busy both days, and the chairs are not particularly comfortable for someone who is ill and exhausted, but overall the clinic felt calm and welcoming. There were a group of us doing breath tests and having first appts, some other people were in for follow up appts and then there where a large group of people coming and going all morning who were having IV’s.

    All in all it was very busy with patients and I was surprised at how many they could see in one day – it also showed just how hard KDM and the nurses work.


    The consultation.
    At about 9.30 am KDM called me in for my consultation with him. My husband came in with me as an extra pair of ears – particularly useful as my brain was in full switch off mode and I was weirdly nervous. Also really glad that I had prepared so well and typed up brief notes and a list of questions as I really was so exhausted by the time I got in there.

    KDM himself was very nice, he had a kind manner and smiled and even joked a bit with me, he made me feel at ease and I felt that he genuinely cared. He said straight away that he could tell I was a ‘Viking’ with my blue eyes and then told me they had been doing some genetic research to do with the ability of different genetic subtypes to ‘clear and deal with’ infections, particularly they are interested in intracellular infections.

    He said they were finding the blue eyed, Viking types more susceptible to on-going chronic infections- I think he said a paper was coming out on this soon- but my memory is not reliable on this point. He seemed very excited by this research and other new patients also told me he had mentioned it to them.

    Then he asked me some questions while looking at the tick box symptom form I had been asked to fill in. The form was very good as it had very pertinent questions and you could also tick severity. He asked how my children were, and if there was any autism amongst my children – there isn’t, but I explained the various other family issues.

    He asked other questions which I do not recall, then he asked me to jump up on the couch and felt my stomach. He found an excruciating tender spot on the right hand side about level with the belly button and told me this was the immune system area and was commonly very tender in his patients.

    Then he asked me about my questions (I had already told him at the start that I had some) and he also took my notes and said he would look over them that night at home (once again surprised at how hard he worked for his patients), he did however glance at them while I was talking about my concerns. I asked him about my worries over my heart and he talked about low blood volume and circulatory issues – he also wants to do an echocardiogram on my next visit, but I am not sure when that will be as my follow up appt is by phone in 10 weeks.

    Then I asked him about various other symptoms and he was very reassuring saying these where all very familiar to him and that it was most likely caused by widespread inflammation in the body, possibly caused by a chronic infection. He told me that now 95% of his patients have some kind of infection that will be wreaking havoc in the body, and usually more than one.

    Then I asked him about my increasingly bad brain issues – the feeling of my brain moving, the vagueness and the body spasms. He said he was certain this was caused by inflammation in my brain and then said that the inflammation was most likely causing me to have seizures that where causing the body spasms. This was what I had thought was probably happening and he reassured me that this was most likely reversible if they can find a cause a and reduce the inflammation.

    Then he talked about a new trial they were going to start in 3 months’ time with 3 drugs plus a placebo for bringing down brain inflammation. He was hopeful that one of these drugs would prove very useful for patients in the near future and he seemed excited about this.
    My final questions where around my diagnosis and what help he could offer me. He said exactly what I wanted to hear- he told me he didn’t care what I had, or what anyone wanted to label it or what name it was given - all he was interested in was looking at the bigger picture to find what was wrong and treat it

    . I asked if my age and length of illness was an issue and he was also positive about this and told me of other patients who had been ill for much longer and made very good progress

    . At this point I felt very emotional and had to stop myself from crying in his office. Then we said goodbye and the consultation was over. I don’t know how long it lasted, but it felt just right, and although he didn’t say anything too specific about my own case I came out feeling very hopeful that he would do everything he could to get to the bottom of it.
    Once back in the waiting room, the tears did come and I had a bit of a cry, the emotion just spilt out and I decided that I didn’t mind if people saw – we were all in the same boat and it was an emotional ride!


    The second day in the clinic
    The next day we were back at 8 am, this time after drinking the Fructose and starting the breath test for the day the nurse took me into a room and showed me all the tests he had ordered, this is just the redlabs one, with the prices in euros on the right hand side:
    Proinflammatory cytokines panel 164,00
    Perforin expression 115,00
    Elastase 115,00
    CD57+/CD3- Absolute count 62,00
    Soluble CD14 70,00
    Prostaglandin E2 70,00
    Vascular endothelial growth factor 70,00
    IL-17 Cytokine (Elisa test) 79,00
    Nagalase Activity 89,00
    DNA extraction blood 50,00
    HHV6 Human Herpesvirus 6 53,00
    Borrelia burgdorferi sl / PCR 99,00
    Bartonella spp / PCR 99,00
    Chlamydias serologie- IgG & IgA/M 159,00
    Yersinia Serology - IgG & IgA/M (immunoblot) 159,00
    Zoonosis 180,00
    Tularemia Serology 46.00
    Metagenomics stool Analisys 280,00
    FOB-Trans. + Lactof.-Calprot. 63,00
    There was also LTT Borrelia testing at infectolab in Germany, a test that went to the states (I was lucky as the next batch was being sent the next day so my results should not get held up), and food allergy panels, full blood counts etc as well as the Lactose and Fructose breath tests and the exercise test and an echocardiogram.

    I haven’t added it all up yet to get the final cost, but it will be about 3,000 euros approx which is what I expected.
    The nurse showed me these and had me sign the forms, she explained about the various payments:

    (KDM’S fee 80 e paid the first day to clinic.
    Fructose and Lactose breath tests 90 e each paid second day and exercise test 125 e paid second day also to clinic.
    Infectolab must be paid by bank transfer within 24 hours or they will not process the blood.
    The Redlabs invoice I got by e mail when we got home and can be paid by bank transfer or credit card.
    The American lab I have not heard from yet.


    Then she took the blood for the tests, and what an enormous amount of blood they took – at least a whole armful and then some. She had my lay down to do it, but I actually felt pretty dizzy quite a long while before she finished –

    I don’t know how many vials – perhaps 20 or 25? I do know I had to lay down for a long while after. Then it was back to the waiting room to continue with the breath test. At 11.30 am that was finished and we went into the car park to brew up some tea and make lunch on our camping stove (what a godsend that was!) While still trying to get some food in me the nurse called me in for my exercise test.


    The exercise test
    I knew this was going to be tough, coming hot on the heels of 3 exhausting days that included lots of travel, giving them a lot of blood and having done two short days of fasts, but as I am not going back for my follow up apt but having it by phone I asked to do it that day before leaving.

    The nurse was great and got me in as quick as she could so that we could go home. She hooked me up to some wires that read your heart, took a reading then got me on the bike, put a mask over my mouth and nose (it was a bit scary and hard to breathe, but ok really).

    Then I cycled, with the machine making it harder – she asked me to keep it at a constant reading on the screen and said I should stop when I couldn’t do it anymore – but before I felt like I would fall off. This point came very, very quickly – I could only have been on there for 5 minutes - and I was worried I hadn’t tried hard enough or that they wouldn’t get a good enough reading from it, but she said it was OK, although She did seem surprised that I couldn’t do more.

    I guess I had one eye on how bad I was going to crash just from the trip, and I am usually not able to exercise at all and use a wheelchair for outside.
    After that we paid for part of the bill (see above) and made a phone apt for mid-July and then left. Overall it was a very exhausting, very emotional, but hopefully very worthwhile journey.

    Thanks for reading!
    Justy.
    Last edited: May 17, 2014
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  2. golden

    golden Senior Member

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    Brilliant Justy!

    So pleased for you getting some good testing done.

    Thankyou for your post, I was wondering if you had been yet.
    xchocoholic and justy like this.
  3. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    That was an interesting narrative, thanks.

    This bit stood out in particular:
    Is that spot located where the abdominal muscles (abdominus rectus) tie in to the external obliques (via the flattened tendon called an aponeurosis)? If so, does it matter which side? I've had an inexplicable tender spot there for many years, long before I got sick.

    [​IMG]


    P.S. Why can't you get the echocardiogram at home?
    Last edited: May 17, 2014
    justy likes this.
  4. RML

    RML Senior Member

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    Thanks for sharing your story Justy. Glad you got there finally. It is quite a trip isn't it! I took me nearly 2 weeks resting after it, maybe 3 until I felt anyway normal, for at least normal for me. I went to Brussels by flight so it wasn't as long for me. But when I was still living in England, or at least in the process of moving my stuff home, and going back to sell my flat in Herts, I remember the car journey to Holyhead for the ferry was absolute killer, I dreaded it each time.

    I'm doing my exercise test on Tuesday, so glad to know your experience. To be honest, I cannot imagine even doing 5 minutes of it. Am really not looking forward to it.

    Rest yourself well and recover from it all. It's hard to put yourself through the effort and strain but for a good purpose at the end of day.
    justy, Valentijn and peggy-sue like this.
  5. peggy-sue

    peggy-sue

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    I've just poked my middle, on both sides of my tummy button - there's a sore bit on the right hand side!
    I never knew that before. (That I had a sore spot or that it meant anything!)

    Rest up, Justy, I hope a whole load of good comes from all your exertions, it's certainly sounding positive!

    Hmmm, I'm of viking ancestry, blue-eyed, I have a great aunt who had the funny bent finger indicative of viking genetics, but I do not suffer from recurrent infections, (well not until now, 10 years in, with oral thrush etc.)
    justy likes this.
  6. RML

    RML Senior Member

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    @Sherlock It also did this on me. Trying to remember it now but for me I think the spot was about 2-3 inches across from belly button and maybe an inch down. I wasn't expecting such a reaction because never noticed pain there, but when he pressed down it was agony, I nearly leaped off the couch ha! By time I got back to my room, I noticed a bruise there too, lasted about a week.
    I meant to ask him why he did it and what it meant but my brain was too dopey and still asleep to process this to ask. Mine was on the right side and he also did the same on the left though, but no reaction.
    justy and Sherlock like this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @justy

    Thanks for such a thorough narrative! You did splendidly--in that you actually managed with all of those extra stressors.

    And yes, I have always found the Eurovolley people extremely helpful. They know we are ill and respect that.

    Note for future visits: those of us who react to big blood draws know who we are. Not everyone reacts but if you know you are likely to, ask KDM to give you IV fluids afterwards--he is happy to order it (he did for me). This can make the recovery easier.

    Rest up, you are officially a hero! :thumbsup:

    Sushi
  8. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Thank you, @RML. That seems to be something different from me, then. Maybe in your case that's an inflamed lymph node? The bruising wouldn't seem to fit that, though. Did he press really hard?

    Then again, if you are small, then maybe 3 inches could just about reach the type of spot that I indicated. There is a kind of shallow vertical furrough between the two muscles there.
  9. RML

    RML Senior Member

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    I'm 5'0 so yeah I'm a shortie! I'm not sure if he was a bit rough or just that he had to press hard to get the reaction. It's hard to remember the exact spot all these weeks later, so I am only estimating.
    Mine was def right side, and he did check the other side in same spot so patients must react both sides.
  10. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Thanks again, @RML. I just did a websearch, but coudn't find anything on this. Maybe your and Justy's accounts are the first :)
  11. Hanna

    Hanna Senior Member

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    Thanks a lot Justy to take the time and all the efforts for relating your experience with KDM. Wish you to recover quickly from the extra stress and exhaustion, and a lot of success with your new treatment to come.
    justy and peggy-sue like this.
  12. Cheshire

    Cheshire Senior Member

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    My uncle has got 4 bent fingers, he's green-eyed (like nearly everybody in my family), he was also told by his doctor that it was because of viking ancestries but my eyes are brown...
  13. filfla4

    filfla4 Senior Member

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    I remember that tender spot from my first visit 3.5 years ago! I too jumped in pain when he pressed it rather strongly.

    I've always had pain in that spot, long before I became very ill. In fact, I was first diagnosed with ovarian cysts (this is more than 30yrs ago when the testing wasn't good), and then I was told that I had a rumbling appendix (I never had acute appendicitis) and it was advised that I have an appendectomy since I was of child-bearing age.

    After that the spot was still always tender and before seeing KDM I always thought it was my appendectomy stitches playing up.

    So many years later when I got to see KDM he was very annoyed that doctors are so quick to remove bits!! He was also annoyed I had had a tonsillectomy. He said the appendix has a purpose to serve and should not be removed unless acute.

    I have since learnt that the appendix is a site where certain good bacteria gather which are important when one has an episode of a gastric bug or food poisoning. It seems that this spot is tender with many ME patients and there has been a lot of research recently about the microbionta and the importance of gut bacteria.
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  14. peggy-sue

    peggy-sue

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    I'm sure I read recently (last couple of years) that the appendix has a role in the immune system.
    filfla4 likes this.
  15. Sasha

    Sasha Fine, thank you

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    http://politicalblindspot.com/scientists-finally-discover-the-function-of-the-human-appendix/

    Interesting... my brother-in-law just had an emergency op after his appendix burst so I've been noticing everything appendix-related lately. I heard in the last few days that appendicitis is rare among non-Westernised Africans but when they change to a Westernised diet, appendicitis starts appearing. Don't know if that's true.
    filfla4 likes this.
  16. NK17

    NK17 Senior Member

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    Thank you Justy for your in depth reportage of your visit with KDM.

    He really seems to want to get the big picture of each one of his patients and for that and his long experience in the ME/CFS field he really stands out as a great clinician.

    The tender/sore spot in the belly is also something that Dr. John Chia has told me about when I saw him a couple of years ago.

    I wish you a smooth recovery after the long trip, the sleepless first night and all the tests.

    I hope KDM will find one or more effective treatments to pull you out of the well, you really deserve it :hug:.
    Helen, peggy-sue, justy and 2 others like this.
  17. Daffodil

    Daffodil Senior Member

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    hi justy. may i ask how long you have been sick?

    my friend also had a spot that was tender around that area and KDM said that was indication of lyme...maybe it was the spleen? I cannot remember.

    you can ask the eurovolley staff the next time to switch you to another room. I did that before and they were very accommodating. sadly, the mattresses are so old there, my back was a mess.

    I also loved the restaurant...and the cute waiters! lol

    the dark meat at breakfast is horsemeat! :-/
    justy likes this.
  18. justy

    justy Senior Member

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    @Sherlock The tender spot is on the right hand side and I never noticed it before he went looking for it. He did press VERY hard and I have just prodded it now myself and it is still tender there.

    @Sushi that is interesting about the iv fluids - I have never received any before, but I do wonder if this may have helped after the large amount of blood was taken. The nurses didn't seem to mind me laying on the bed for a while, but I definitely seemed to take longer than everyone else (of course!) and I am not squeamish, but did think I might faint WHILE she was doing it. Do you know how many vials of blood they normally take? I was too afraid to ask in case it made me feel even more weird.

    @Daffodil yes luckily I did get switched to another, quieter room. But yes the beds could be a bit better - and I haven't slept in a single bed for years! Luckily I don't eat meat so no horsemeat passed my lips. In the morning, as I couldn't eat I took some rolls etc to have for lunch at the clinic straight after fasting. Afraid I didn't notice their cute waiters, but my husband was quite engrossed in the women's volleyball team practice!!

    Feeling a little better today and already itching for my results. The next big hurdle is can we afford the treatment and can I tolerate it.

    All the best
    Justy.
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks for posting.
    just make sure you post about the cure;)
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  20. RML

    RML Senior Member

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    I asked the nurse how many vials would be taken, he didn't tell me, just that it would be a lot ! Once before, I had about 14-15 vials done at a hospital for a gp, but this time it seemed to take significantly longer than even that. Not that it bothered me too much as lying down on the couch seemed glorious compared to uncomfortable seats outside, and I was so tired and exhausted I fell asleep once I lay down. I think the nurse was worried I was having a reaction or feeling faint, and kept asking if I was ok, but I could not keep awake, or eyes stay open.

    Also, I wouldn't worry about getting emotional. A girl and her mother came out from their appointment on the second day, and she was visibly upset about it for a while afterwards. Perfectly normal I think, and every other patient there understands too.
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