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In Belgium to see Dr de Meirleir

Discussion in 'ME/CFS Doctors' started by Valentijn, Oct 28, 2013.

  1. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I find that having ME is my greatest impediment to dealing with ME. :confused:
    SDSue, ukxmrv, AndyPandy and 12 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    The 2nd infusion went quite well. My fiance was here to drive us to the clinic, so that's a few euros saved :D The infusion itself seemed to go a lot faster this time.

    My mom got blood drawn for a Lyme Elispot LTT while were there, since she was also bitten by dozens of ticks over the years in the same region where I was bitten.

    I asked about moving my port to a different area, since it's right on the bendy part of my wrist currently, and a big pain in the ass. But since my veins are hiding, the only other spot is on the inner elbow, which would be even worse. Plus even my inner elbow veins are crappy for IVs. Apparently this is a common issue with the ME patients at the clinic, and triggered an impassioned speech from Nurse Nossa on the matter :rolleyes:

    So the port is staying where it is for the next two days, but we're leaving off the gauze wrapping, since the pressure of that pushing against the port was causing constant stinging and aching. I just have to be extra careful not to get it wet.

    We had dinner in the hotel last night, and it was hella good. They brought it to the room, even though they usually don't do room service. I've mentioned this before, but it would be a sin for anyone to leave Belgium without trying a "hammetje" (little ham).
    ukxmrv, rosie26, Sushi and 3 others like this.
  3. xchocoholic

    xchocoholic Senior Member

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    Hi @Valentijn,

    I'm enjoying your writings. What does "hella good" mean ?

    On the veins, I'm not sure if it will help but I had 5-6 Myers cocktails about 4 years ago, that appear to have helped my veins. I'm unclear about the long term effects because my memory sucks but I had a dramatic improvement in my ability to tolerate these after about 3.

    Avoiding dehydration helps my veins too. Everytime I have to go to the ER due to dehydration from dry heaving my veins are hard to find. But normal sticks when I'm hydrated aren't a problem anymore.

    Hope this gets easier for you. Tc . X
    Valentijn likes this.
  4. xchocoholic

    xchocoholic Senior Member

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    Hi @Sushi

    I just checked and I take Creon 24,000. Because of my insurance, I get 500 via a mail order drug company for $40. ☺

    I'd been using Enzymedica enzymes but not their lipase for several months and when I re-started this my stomach would gurgle for a little while after taking it. I was ok within a few days tho.

    I was prescribed this because my stool tests showed that I was low on elastace twice. I already knew I couldn't digest food normally tho. I can taste meat putrifying in my gut if I don't take something to move it along. Bleh !

    Tc .. x
    Valentijn likes this.
  5. xchocoholic

    xchocoholic Senior Member

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    I'm amazed that we pwcs are as well informed as we are.
    Goes to show what motivation can do for improving medical research.

    Tc .. x
    Little Bluestem likes this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Oh dear - you are thus condemning Jews, Muslims, vegetarians, vegans and processed-meat-avoiders as sinners! :(
    Valentijn and justy like this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Valentijn

    I'm glad the IVs are going smoothly so far.

    Do they take the port out at the end of the week and put a new one in the next week? Yes, ME patients and veins! :aghhh:

    Sushi
    justy likes this.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Funny - mine are pretty good, even though I get polyuria so am often dehydrated.
  9. Valentijn

    Valentijn Activity Level: 3

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    Yup, so I'll get nearly 4 entire days without an annoying thing sticking out of my hand :thumbsup:
    justy likes this.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    :thumbsup::thumbsup:
  11. Valentijn

    Valentijn Activity Level: 3

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    The hammetje shall cause all men to lay down their broccoli, and unite the world in a brotherhood of succulent pork!
    ukxmrv, xchocoholic, SOC and 3 others like this.
  12. Mij

    Mij Senior Member

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    Hmm, what else did they add to your IV's?:p
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm OK then, being a woman! :D (Have never really understood the appeal of ham, or pork generally, except perhaps bacon)
    maryb and justy like this.
  14. justy

    justy Senior Member

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    Poor little piggies!
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  15. Valentijn

    Valentijn Activity Level: 3

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    I woke up with my right hand pretty swollen this morning, but not painful or red or hot. It sounds like that usually means the catheter needle has slipped out of the vein, which isn't a problem until trying to put more fluids into it. Hence I'll probably need a new one today :( And there's only one nurse, so hopefully it won't take too much time.
    ukxmrv likes this.
  16. maryb

    maryb iherb code TAK122

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    @Valentijn
    Oh dear that definitely has to come out then, roll on luchtime. its fluid leaking into the tissues around the vein (I was told by a nurse when it happened to me) good news is if its not hot or painful it'll be okay.
    Is the one in the neck/chest only used for things like dialysis?

    How're you feeling?
  17. Valentijn

    Valentijn Activity Level: 3

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    I'm not feeling worse than usual. Heart rate is doing a lot better, probably due to the IV fluids. No obvious side effects or herx reaction yet.
    justy likes this.
  18. Valentijn

    Valentijn Activity Level: 3

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    Infusion #3 has gone quite well. A different female nurse was there today, very friendly and calm. She took out the catheter from my swollen wrist, and put a new one on the back of my left hand. I managed to bleed all over her in the process, but it's now nicely in place and not uncomfortable at all. I can bend my wrist and use my fingers as needed, though I have to push the wrapping back slightly to let my pinky roam freely across the keyboard :D

    The swelling has started to go down a bit in my right hand as well - I'll be able to shake my fist at people again in no time! :cool: And now I can operate my mobility scooter a lot easier. And eat. And wipe my butt :oops:

    The hotel is still quite good. Apparently they close on the weekends, and typically just deal with business and related on-site events during the week. It's been pretty quiet though, despite the excessive beer drinking last night, according to one of the staff :p

    We're still waiting to hear from the home care org and the pharmacy to make sure they're ready to deal with me. But they should have all of the info that they need.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    All good news. Its a great relief that you will be able to shake your fist at people again soon--this is an essential human function! :cool:

    Forget, which hotel?

    Glad they have hired another nurse--they are all way to busy!

    Sushi
    Valentijn likes this.
  20. Ema

    Ema Senior Member

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    My magic IV spot (found after 18 cidofovir infusions) is on the top of my arm, on the thumb side about a hands width up from my wrist.

    Everything on the underside of my arm or on a bendy spot was eventually irritating or bruised madly. My hand was OK but inconvenient.

    Hopefully as you get more fluids, your veins will be easier to find too and you will find your own magic spot! (And I totally didn't mean that to sound as dirty as it does!) :D

    Glad things are going well for you overall...just curious, does your mom have symptoms, or if the test just to see if she has been exposed?
    justy and Valentijn like this.

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