So here's my update after my 3 days in Brussels with KDM.
Tuesday 11th of April
Flew from Dublin to Brussels, booked a late flight as I'm not the best in the morning. Flight time is only 1hr 20mins so was fine. Arrived in Brussesls at about 9pm and got a taxi to the Eurovolley centre in Vilvoorde took about 10mins. Taxi was €25 from the airport.
The hotel is clean and the staff were nice but I wouldn't be staying here again. No major issues with the place it is cheap but when going for your initial 2 day appointment you have a lot of free time and there isn't much to do, I traveled alone as I didn't want the wife to leave the kids so maybe this had something to do with it. There is a nice park across the road and a restaurant called De Fontaine in the middle of the park but that's about it. It is very close to the clinic, the first morning I got a taxi cost 8 euros but I walked to and from the clinic for the rest of my appointments think it took 10-12 mins but you do have to cross to big junctions so wouldn't be for some people.
Wednesday 12th of April
Got up about 7am which was 6am in Ireland and for me as the earliest I have gotten up in about 3 years. taxi arrived early at 7.35 and had me at the clinic for 7.40am, the taxi driver actually commented that he passed by it every day and didn't know what it was, there is just a sign at the road saying Hummanitis. Receptionist was very nice, took my details and asked me to fill in a form which i was to give to KDM during my appointment with him. Nurse came out and took me into side room to start Fructose breath test, they take an initial reading (just blow into a tube) then they give you a drink to take out in the waiting room. There were 2 other people having their initial appointment that day, the nurse would come out every half hour and have us blow into the tube this went on from 8am until the final one at 11.30am. I have had this test before (was diagnosed with SIBO previously) in Ireland and it only took two hours and was on a digital machine not sure if there is any differences in the tests)
About 9.30am I was called in for my appointment with KDM. What can I say warm he is not, there was no shaking of hands no introduction nothing. I'm not saying he is rude but I found this very off putting, I'm used to dealing with people on a daily basis with business and this made even me feel a bit awkward. I know some people with this illness suffer with anxiety and I had it pretty bad for a stage last year when my adrenaline was high so just be prepared and don't take it personally. Myself i couldn't care less if he has the personality of a brick if he finds something and is able to offer me a treatment option.
We briefly went through my history and did a physical exam of my abdomen, I explained I have SIBO and he said all of his patients do, he explained why I always get pain on the right side of my abdomen as this is were the small and large bowel meet and there is a valve there. Now one point here and maybe this is why he doesn't come across as warm, you can almost see his brain working as you talk to him analyzing what you are saying.
Once finished with KDM back to the waiting room to finish the Fructose test, the nurse gave me 2 kits for stool sampling and urine analysis. I have done a few stool sample tests in the past and most of the kits I was given have trays etc to enable you to collect the stool this kit is literally a test tube with a spoon in it considering the cost of the test €280 you would think red labs who the test is from would give a better pack.
Back to the hotel I went, had missed breakfast and was starving so ordered a pizza which came straight out of a box but was actually nice. Went for a long walk around the park and then had a snooze for a couple of hours. Walked to the restaurant in the middle of the park at around 6pm for dinner. I had already checked the menu on line which if you are going there I advise you to do as the menus aren't in English (if you speak english that is
) although the waiter did offer to go through the menu with me, had a lovely Fillet steak
mmmmmm. Back to the hotel I headed to do my tests, how I did this is probably best left unsaid
. One of the tests has to be kept refrigerated which would be fine if the hotel had fridges in the room which they don't, I ended up putting it in a zip lock bag in the sink with ice, trying to get it to stay under the water was fun.
Thursday the 13th of April
Got up again at 7am, one of the tests is a urine test which has to be the first sample of the day so did this and after showering etc walked up to the clinic.
Day two is the exact same format as day one, Lactose breath test starts at 8 and goes on every half hour until 11.30. Around 9.30 I was called in by the nurse and he went through the blood tests that KDM had recommended for me. I counted them including the standard bloods there were 50 of them (if these don't show up something I'm giving up
). The tests are for mold, mycoplasms, lyme and co infections and immune function, strangely enough he didn't order any viral tests which given I had chronic EBV as a teenager I surprised at. The nurse went through all the prices and explained how I would be billed, some of the tests like the fructose, lactose, urine & food allery panel you pay for at the clinic. Think my total bill for tests comes in around €3500 which I was expecting. Have to say the nurse was brilliant taking blood, don't have a problem with needles anyway but I know some people do. He was asking me how long I was sick, explained 3 years and he said that was very short they normally see people who have been sick a lot longer told him I will take that as a positive sign so. I did ask him if patients get better, he said they reckon about 70%, nothing to back this up but just thought I would throw it out there.
Before I left I re-booked my follow up appointment, I'm scheduled to see KDM on the 4th of July. I will be doing an exercise test (not looking forward to this) before hand and will see himself after. It will only be a day visit this time flying in that morning and back that evening as I fly out on two weeks hols with the family the following day so will be a bit manic.
I hope this helps some people if considering whether to go or not and what to expect. Is KDM like a normal doctor no, does he have that bedside manner we all look for in the ideal doctor no and tbh I don't care. I have been to countless doctors/consultants and some of them have been amazing lovely people and some of them have been extremely arrogant but they all have something in common none of them have a clue what is wrong with me. If KDM finds something to treat that no one else has so far that will do for me.
apologies for the length of the post
Colm.