The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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First KDM Appointment On Wednesday

Discussion in 'ME/CFS Doctors' started by collie, Apr 10, 2017.

  1. collie

    collie

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    After two months wait my first appointment with KDM is this Wednesday. Flying out from Dublin tomorrow evening, trying not to get my hopes up after so many let downs from Doctors in Ireland but hard to rein in hope I suppose thats a good thing and keeps me going. Will post an update for anyone who is interested when I get back on Friday.
     
  2. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    yEAH, PLEASE.
     
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  3. Starlight

    Starlight Senior Member

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    Good luck,hope it will bring answers for you.look forward to hearing about your visit.
     
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  4. JadeD

    JadeD Senior Member

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    Don't worry Collie it will all go well. I had my first appointment last Wednesday and although it was difficult with the fasting and sitting there for 4 hours each day, it actually gave me a mental boost as I knew I was doing something positive for my health. The staff are lovely and so is KDM. Be confident to ask him any burning questions that you have at the end of the consultation and he'll be happy to answer them albeit short and sweet. Good luck.
     
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  5. collie

    collie

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    Thanks for your reply JadeD I'm actually looking forward to the 4 hours peace reading my kindle, seldom get four hours to myself with 3 kids and a business :). Just hoping I get some answers and treatment options from this process.
     
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  6. JadeD

    JadeD Senior Member

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    Oh my you do have your hands full so the 8 hours will be a blessing! I'm very confident in KDMs approach. He may not give you all of the answers during the initial appointment, although he'll have a good idea what's going on from your symptom subset, illness onset and abdo exam. The test results will obviously confirm exactly what's going on and will guide future treatment. We treat what we find he told me. His wealth of experience is invaluable and in my opinion far exceeds what is currently available to us in the U.K. All the best.
     
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  7. collie

    collie

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    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 :love: mmmmmm. Back to the hotel I headed to do my tests, how I did this is probably best left unsaid :D:D:D. 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 :D). 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 :D
    Colm.
     
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  8. JadeD

    JadeD Senior Member

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    @collie - Your very accurate account just popped up on my e-mail. I'm really pleased it all went well. Except from the floating sample/ice situation :). I think your summary is informative and will help others decide whether or not to take the plunge and go and see him if they're able to of course.

    I agree with your bedside manner comments. I really respect his approach and like you think he's problem solving throughout. I did get him slightly off topic and we did have a few smiles and laughs which was heartening.

    Fingers crossed for us both that the results will show something treatable. My follow up is on 7th June. I know we have to keep somewhat guarded in the fact that we might be 'let down' like all of the previous occasions but we have to keep trying don't we.

    All the best Jade
     
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  9. collie

    collie

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    Thanks Jade hopefully it's the beginning of some answers for us. I suppose whatever happens we are the fortunate ones in that we have the opportunity to try this route when many in the same boat as ourselves can't.

    Strangely enough the day I was heading to Brussels I had an interesting call from an infectious disease doc I saw previously. He tested for infections etc didn't find any but put me on a course of rifampcin and azithrymicin which I had to come off after 2 weeks. But he did say while they didn't find any infection they found evidence of one whatever that means and that if I'm not better I should he getting more treatment so I contacted him to arrange another consult more irons in the fire.
     
  10. Valentijn

    Valentijn Senior Member

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    He's definitely an introvert, and much more focused on the symptoms and disease than interacting with the patient :p But he does light up from time to time if an interesting topic comes up regarding research or similar.

    For my suprise hotel poo collection, I tore the top off an empty box of tissues, lined it with a few layers of toilet paper, and held that while pooping. Then dumped the toilet paper out with the poo remnants after collecting the samples, and double bagged the tissue box just in case. At home I use a plastic plate placed in the toilet, which is a lot easier.
     
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  11. collie

    collie

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    Necessity is the mother of invention :D will have to remember that one valentijn :thumbsup:
     
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  12. collie

    collie

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    So I'm still awaiting the results from my tests with KDM (back with him on the 4th of July) but thought I would share an update with anyone who is interested.

    I attended an infectious disease specialist here is Ireland last year who put me on Rifampcin and Azithromycin he didn't find anything specific with tests but thought it was worth a shot. I lasted two weeks the pain in my liver was unreal and I came off them. I couldn't contact him as he had left the country for 3 weeks hols so left a message for him to contact me and forgot about it. Fast forward to the day I'm heading to see KDM in Belgium and low and behold he contacted me to see how I was. I explained the situation and we agreed to do a consult when I got back from Belgium.

    So 11th of May I had my consult and we spoke about the liver pain, tests I was getting done in Belgium etc. I agreed to go on another course of antibiotics these two are Cefuroxime & Lycimor, I reckoned I had nothing to lose while waiting for my appointment in Belgium. Been on them 11 days now and have noticed a definite reduction in my pain especially the bone pain in my shins. About day 6 of the course felt awful like I had been hit by a bus, and every time I take them I get a flare of symptoms some that I haven't had for a long time especially brain fog. My liver seems to be coping much better this time around as I had added Tudca, Choline & Liposomal Glutathione to my supps. Yesterday I noticed the red lines at the tips of my nails are getting lighter and my moons which I have lost on all my fingers except my Thumbs are starting to come back on two of my fingers.

    Not sure if this means I have some kind of infection but am hoping the upward trend continues, roll on the 4th of July when results of tests will hopefully back this up.
     
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  13. Daffodil

    Daffodil Senior Member

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    he is much calmer, relaxed and therefore friendly in reno. in Brussels, he is just uber busy, so can be a little short. its like an assembly line over there, one patient after another..he seems on edge in Brussels.

    once you get used to his temperament, its no problem at all. congrats on making a 100% right decision and seeing this genius!
     
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  14. JadeD

    JadeD Senior Member

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    Hi Collie

    The new antibiotics sound promising. Hopefully you'll continue to see some benefit.

    Just to let you know you can request your results from redlabs and lmo if you e-mail them directly. I did this and have all of my results now within 6-7 weeks after the blood was taken. It's good to have a heads up before you see KDM in July and it may help with your ID doc depending on his ability to interpret the results of course!
     
  15. collie

    collie

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    Thanks JadeD will wait another week and give them an email. Redlabs seem on the ball got my invoice from them within a day or returning to Ireland, only got my invoice from Armin labs yesterday which seems a bit of a wait. Will let you guys know if I get the results.

    thanks
    colm.
     
  16. msf

    msf Senior Member

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    Wow, ID docs over the Irish Sea are different! Your ID doc would appear to be treating you for Lyme based on his prescriptions, or something that responds to the same kinds of antibiotics anyway. I think you will find KDM a nice change in that he does not prescribe based on hunches, but rather on tests (although some would say that the interpretation of some of these tests is based on a hunch). Also, if you feel up to spending some time in Flanders whilst waiting for the doc then you will probably take his brusque manner less personally.
     
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  17. collie

    collie

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    So my first results are in from Red Labs on stool tests, bloods will be ready end of next week and msa stool analysis in another 3 weeks. Details below, someone better educated to explain these might comment but from what I can see I have major leaky gut. Now how do I go about reducing it? I'm currently taking cholostrum, SBO probiotic, Carnitine any other recommendations?

    sIgA 3726 range 510 - 2040 ug/ml
    Zonulin 343 range 10-110 ng/ml
    Calprotectin - low positive
    Fecal Occult Blood - Negative
    Transferrin - Negative
    Lactoferrin - Negative
     
  18. adelheid55

    adelheid55 Senior Member

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    KDM will prescribe the medicine for your leaky gut, don't worry. The food intolerance test will show which Food you have to eliminate.
    You can send an email to Arminlabs for Lyme results which they will answer quickly.
     
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  19. collie

    collie

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    thanks have just emailed arminlabs so hopefully they get back to me shortly.
     
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  20. collie

    collie

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    So I got my results from ArminLabs see below. Does this mean I have Lymes disease any comments appreciated.

    thanks
    colm.

    Borrelia Elispot

    Borrelia B. Full Antigen
    0-1 = Neg
    2-3 = Weak Positive
    >3 = Positive

    Result 2

    Borrelia b. OPS-Mix
    0-1 = Neg
    2-3 = Weak Positive
    >3 = Positive

    Result 2

    Norrelia Burgdorferi LFA-1
    0-1 = Neg
    2-3 = Weak Positive
    >3 = Positive

    Result 0

    The results of the Elispot tests indicate weak current cellular activity against Borrelia Burgdorferi.
     
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