1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

My first appointment with KDM

Discussion in 'ME/CFS Doctors' started by RML, Apr 7, 2014.

  1. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    It is exactly a month now til I am suppose to start treatment in Belgium.

    But I am now not sure it will even happen, and thinking of cancelling altogether.

    I am finding nothing accommodation wise, and even the pokiest kips are horrendous prices. Even flights going over there, have gone sky high now. I wasted too much time trying to organise it here at home while should have been concentrating over there and got flights way back when cheaper.

    When I first heard the cost of IV at the clinic, I thought it was reasonable and was able to accept this price. Now other costs taken into consideration, I am not sure it will be affordable at all.

    I'm pretty down so I never make decisions when I'm like this. Maybe i'll just put it off a few months instead.
     
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,518
    Likes:
    9,660
    Amersfoort, Netherlands
    Are you looking at regular apartment rentals, or vacation rentals? It's a very bad time of year for cheap vacation rentals, but maybe you can do a "normal" rental for a pre-set time period.
     
    maryb likes this.
  3. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    Looking for short term apt rental ideally. I did see a place yesterday, I will contact them today asking a bit about it and see if they will allow 3 months stay. It is not along bus route as I hoped. But I will work out how far away and how will get to clinic when I arrive.
    It is not many weeks left, so getting worried about it. Other than that place, I will either go a week early and look then , or wait til I get there to look and hope I am not too sick or having bad reaction to IV.
     
    Valentijn likes this.
  4. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    I also went the other day to a specialist to organize colonoscopy as recommended by KDM, he also decided to gastroscopy too.
    This guy was a lot nicer than the supposed Lyme I.D guy I went to before.

    Obviously he wasn't sure what to make of Lyme diagnosis etc esp as my GP wrote - ? Lyme diagnosis abroad on request letter.
    And he noticed another mistake in my summary report - prostate pain. I was worried he would completely discredit everything else cos of that mistake. But he was ok by end of discussion. Didn't understand KDM's way perhaps, but said 'who am i to interfere with this comprehensive plan' or something similar. I think it was mainly my fear of doctors at this point that had me paranoid.

    Lyme is not his area or his interest, I went there for the other bits and got that from him anyway. I will have it the week before I leave so hope there is no extra problems or complications.
    Well, besides picolax fun! :meh:
     
    justy and Valentijn like this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,100
    Likes:
    6,080
    Albuquerque
    If you are going to get an endoscopy (gastroscopy), ask KDM about getting tissue samples for biopsy. He is doing some good research along this line. Others (in other countries who have had endoscopies) have had samples sent to the lab KDM recommended. The tissue samples have to be taken at a certain depth, so you would have to get all this information from KDM.

    Best,
    Sushi
     
    Valentijn and RML like this.
  6. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    Hmm sounds interesting, good to know he is continuing to do research, don't know where he finds the time! Anyway, would it cost me extra for testing? Not sure what my doc will make of it but I'll see what I can work out.

    How do u contact him anyway? Can you email him directly or just the general email (to Ira i think) to clinic and asked them for info or answers from him?
    I also want to confirm my start date and some details, as I only scribbled that down in a notebook, I also wrote 5 days a week, but I am sure that must be wrong cos everyone else seems to be doing 3 days etc

    Also want to ask (beg) to stop b12 or if there is alternative. If it is vital, I'll try stick with it.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,100
    Likes:
    6,080
    Albuquerque
    No, it only costs the patient the price of shipping the sample. I find that phoning the clinic works much better than emailing as they are snowed under with emails.

    But to ask about the tissue samples, you could write an email addressed to him, with a note on top "Please forward to Professor De Meirleir," and send it to any of the secretaries. He gets these emails and I have always had a response from him--the time lapse varying with the urgency of my question. If you have an endoscopy already scheduled and it is soon, you might want to phone and ask a secretary to give him the message.

    A secretary could look in your file and see when your IVs are scheduled.

    Sushi
     
    RML likes this.
  8. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    Can anyone tell me if the clinic is closed for holidays now?

    I emailed yesterday, wanting to confirm that my start date for IV's is 4th August at 1 o clock. And to check how many days a week it is, I wrote 5 days a week, but most seem to be on 3 days a week unless I picked it up wrong. Also asked if I will appointment with KDM that day too for echocardiogram, he just said next time about that, so could be anytime or first day there.

    Obviously I know they are not great at answering emails, so been ringing all this morning several times and not picking up.

    I want to book flights and accom, and don't want to do this until it confirmed. I don't trust a verbal appointment and arrive there on Monday 1 o clock and they not expecting me, and I've already paid expensive flights and 3 months rent. Would they fit me in anyway, even if not 'down' for it.

    I am getting anxious and stress now, only 2 weeks to go and want it to be definite and finalised before I leave, I don't want problems and issues when I arrive.
     
  9. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,518
    Likes:
    9,660
    Amersfoort, Netherlands
    I'm pretty sure it's open this week, but closed next week and the week after. They reopen an August 4th. They typically have a ton of patients arriving in the morning right after they open, so it might be better to call after 10am or so.

    I wouldn't worry about confirming the IV appointments. You aren't seeing the doctor, and the IV's are a very routine and daily occurrence. There will be a lot of other patients doing exactly the same thing, and the nurses don't really care if you're exactly on time or not. You don't even need to talk to the receptionist when you go in for any IV treatments, and I'd generally recommend against it since she doesn't give clear instructions anyhow, probably assuming that everyone has done it before :rolleyes:

    Basically you just walk into the nurses' area (the one with a big desk and some table-bed-things in the back), and knock on the open door there or get their attention when they're looking in the right direction. There's a chair just inside the nurses' area which is a nice place to sit and wait for a couple minutes if needed.

    They'll have you on a list of people who are being treated - if not, they just check the computer records to see what's going on. Then they get everything started, you sit for a while, they unhook you, wrap up the catheter area, and off you go!
     
    justy, Sushi and Clodomir like this.
  10. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    thanks val, think Im just getting panicky ! things tend to go wrong or not to plan when I'm involved somehow always!
     
    Sushi and Valentijn like this.
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,518
    Likes:
    9,660
    Amersfoort, Netherlands
    @RML - Do your treatments start at 1pm? I'm there from 9am until 12-1pm-ish, so maybe I can loiter a bit one day to say "hi" :D I'll be there on the 5th, 6th, and 7th of August.
     
  12. maryb

    maryb iherb code TAK122

    Messages:
    2,888
    Likes:
    2,018
    UK
    @RML
    where did you find to stay?
     
  13. JoanDublin

    JoanDublin Senior Member

    Messages:
    176
    Likes:
    391
    Dublin, Ireland
    @RML

    Did you get through? I just phoned them a few minutes ago and got speaking to someone so they are definitely there
     
    Sushi and Valentijn like this.
  14. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    Of course, I will look forward to it. Yep start at 1pm, on the Monday. Sorry I thought I replied to this already, but I read it last week, while my accommodation search was falling apart, along with my sanity.
     
    Sushi and Valentijn like this.
  15. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    Yesterday was Picolax day and bland restrictive diet too. According to the instructions, I was to stop eating solids by 1.30pm, but I was a little late and stopped instead at 3.30pm. Took 2nd sachet at 6 and was getting worried cos it was having no effect on me until 10pm. By 11, I was in bed and felt awful, all shaky and weak, one of my hands went numb, also really really drowsy.

    Today was filled with all kinds of crap too!

    I am terrible in mornings, and if I can, always try to grab an afternoon appt when I'm going somewhere. This wasn't possible in this case as they were squeezing me in last minute before I head to Brussels.

    So 5.30am alarm starts are always bad, this was particularly so... I looked like I was dying (funny as consultant said when he meet me the other week, I look too healthy to be coming to him). Well, nobody thought that today. I couldn't keep warm, and my usual gasping thirst I always have was at a whole new level of thirsty. And I was starving! It felt weird, I didn't know what it was at first, as for a year or more now I have completely lost appetite, never hungry (always feel full hours after eating very little). Today, I had hunger to make up a year of no hunger. I didn't mind at that point, all these feeling crappy bits,as I thought it would over soon. Be home by lunch time, rest up for rest of day etc.

    I thought my appointment was for 7.30am this morning, but when I arrived there, It was just to check in to day care along with many many others. It was an hour before the secretary called me, then when I paid I had to wait in another waiting area for another half hour, then taken to a bay room to change to p.j's and they'd be along for me shortly they said.
    Well, it was actually 11.00 before I was wheeled off and 11.30 before doctor came in to do the 2 procedures (gastroscopy and colonoscopy).
    As I was expecting to be in by 8, my mum planned to come back for 10.30 for me, she was late coming back but even still she was waiting in bay before I was brought back out. I then had to wait for an hour or two for obs, and til sedation wore off properly. Finally got feed some tea and toast by 2pm.

    I didn't mind waiting a bit, I was so tired and crappy didn't really care, but by 10am I was getting a bit peed off, seeing everyone else wheeled off and back , and then someone else. I think I was last one to be called. I got a bad headache by 9.30ish, was so hungry and thirsty, and tired. If I had known it would be such a long wait, I would have pushed back the dinner/final solids til later in previous evening. And also would have had more water too, that I had to stop 2 hours prior so stopped it at 5.30/6am.

    I must have looked awful, cos nurses kept stopping to ask if I was ok, and one even asked if I had taken sleeping meds, I was so drowsy and sleepy. Like I said mornings are always bad, but then no food/water, not much sleep and picolax drained me of any energy I could have had. My energy levels in last month and half have been much improved, great even, so I am fearing now that picolax strain on my body etc will ruin that. I still feel awful now, had terrible cramps in tummy after dinner, kinda gone now though and still feel v sleepy and almost sedated. Hopefully after a good nights sleep, I'll be ok tomorrow and recover properly.

    Because of the delays and my mum being too early, the carpark bill was was 15Euros. I had told her to go drive it out and back in again, but she wanted to there for doctors rounds at the end, in case I didn't hear it all and I still drowsy and groggy. But we were worried about car park but no way expected it to be that much.
     
  16. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    Hate packing, getting stressed out now! Too hard to fit 3 months into 1 case, especially having to cover 2 seasons, by the end of Oct when I'm done be much colder than most of stuff I've picked out! And my meds are gonna take up half the case too!

    This last week has just flew by, mostly trying to try up loose ends and get things in order before going away. Also had a big slump early in week, which didn't help matters, and was largely by myself without usual help, as my Mum is desperately trying to finish some work before going. She is not gonna have it complete I don't think, she will give it a final push tomorrow. She has been pushing herself way too hard to cover too much all by herself in last few months, and I fear she will be just exhausted and wrecked as I am. I have been trying to cover bits and pieces to get organised like banking and washing clothes, organising appointments, and Ill pack her stuff while she is working tomorrow.

    Anyway, I realised also that I made a big muck up when ordering my pre-treatment meds. I don't know what is up with my brain but it obviously wasn't 'charged up' when I was sorting it out. Probably because I had such difficulty with getting it all, and was anxious to access it and start off on some treatment.

    So I ran out of the Choline DHA earlier in week, for some reason I didn't calculate how much I would need and just ordered one pack of it, which doesn't make sense as I worked it out for the Lactoferrin and ordered 2 packs, and I take them both twice a day.
    I can't remember what Choline is supposed to do for me, but in last few days I have been having hot sweats and overheating again, especially yesterday I was nearly passing out with them, sweat dripping off my face - gross! And that is something that has improved drastically since taking pre-meds, not been an issue at all. So it is good to know something is working and improving but a pain that it's run out too soon.

    Also my gluthatione should have run out by now, (I knew I didn't order enough of that) but I must be taking ver small teaspoons of it to still have some left.

    Now I don't know when to order it, or what delivery address to use. I spend the first week in Eurovolley, before moving to place I'm renting. I can't remember how long it took to arrive before, and I don't want to be checked out and moved on if it arrives to Eurovolley, don't even know if they will take deliveries. And I'd rather not wait a further week without the stuff to take until I move to permanent address. I'm so annoyed I didn't cop on early enough to order it to my home here and pack it in my case.

    And the other issue is the VSL, instead of ordering too little, I've got way too much of it. I ordered 3 month supply to carry back from Brussels before but only had a month and half to go at that point, so now I have to truck it all back to Brussels again. Such a pain because have to use cool bags and ice packs etc to keep it cool. I have a whole load of boxes of it, esp as I haven't always been taking it twice a day as I should. It was a real hassle getting it back on plane before so gonna have to do it all again. I messed up big time!

    Anyway, I'm exhausted now and way passed my bed time, I'll worry about it and work it out tomorrow. Right now, I need to clear off my bed as it is covered with clothes all in ordered piles and some scattered about, while trying to work out what to bring and what to leave from earlier on. I should have ordered a second case, a 15kg case doesn't hold much esp when most of it taking up with my stupid meds that I cocked up on.
     
    AndyPandy, Valentijn and Gingergrrl like this.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,100
    Likes:
    6,080
    Albuquerque
    @RML

    The Eurovolley will let you use the fridge in the kitchen! :)
     
    AndyPandy and Valentijn like this.
  18. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    1,907
    Likes:
    3,168
    USA
    @RML, I'm not sure if I have posted in your thread before but have been following your journey and want to wish you the best of luck on your travels to Belgium. I totally understand re: the suitcase and I only had to pack for two nights to see my CFS specialist (and we went by car) but still needed a cooler for the meds that had to be kept on ice, special food b/c I am on such a limited diet, all my medical records, etc, and my suitcase was packed! I was wondering, can you ship some boxes of stuff over there besides the one suitcase? (I mean like extra clothing and stuff you do not need immediately?)
     
    justy and AndyPandy like this.
  19. RML

    RML Senior Member

    Messages:
    148
    Likes:
    295
    Dublin
    That's great @Sushi - I didn't even think that far ahead with storage when I arrived. Handy to know I can use the fridge.

    I was half thinking of ordering more VSL3 when I have to get more Choline and Readisorb. But Amazon prices are crazy. And I think before I got it in pharmacy in airport but needed a script for it, and I don't have an appoitment with KDM set up so it could take weeks before I see him to ask for another script of it.Looks like I will have to pack in there somewhere afterall.

    Thanks @Gingergrrl43 , that is a good idea. I also now thinking perhaps I will come home for a weekend in the middle, and bring more over then. So I can get rid of lighter summer clothes, and bring more warmer clothes then.

    It would also be nice to get home for a quick break in between (over last few days every time I walk pass my dog, I stop and give her a big hug and tell her how much I'm gonna miss her. Now she has big sad puppy dog eyes looking all forlorn, I swear she knows she gonna be abandonned for ages. She is my rock these days, keeps me sane through the bad days and I'm worried about leaving her). Anyway, I am not sure to book these flights in advanced in case I am having major reaction or herx and feeling crappy at the time. And having to fit in two flights, home and back, over a weekend might be too much.

    Just today left to sort all these little bits and decide on them. I don't want to have too much to panic and do on Sunday morning before leaving. Getting my hair washed and some food on will be enough before the flight at 6pm.
     
    justy, AndyPandy, Sushi and 1 other person like this.
  20. AndyPandy

    AndyPandy Making the most of it

    Messages:
    236
    Likes:
    480
    Australia
    Good luck @RML. Hope you get your meds and packing sorted out and all goes well.
     
    RML likes this.

See more popular forum discussions.

Share This Page