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.