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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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In Belgium to see Dr de Meirleir

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

  1. Valentijn

    Valentijn Activity Level: 3

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    Woohoo, it just took 3 more tries and now the IV is running normally since 7:30pm! It was the nurse I see the most who came by, and she tried the first two on the right hand. No vein in the first attempt, and the 2nd one hit the vein but couldn't get the little tube to go in all the way, and when she tried to get a little saline in it stung and formed a bump nearby which is already a lot smaller. And then it bled a lot when that cannula came out :rolleyes:

    So now it's near the pointer finger of my left hand. Not an ideal location, but hey, at least it's not on my mouse hand! After she finished up, I finished my sushi (fiance is coming home late, so got delivery), and am now going to lie down and whimper for a bit :D 6 catheter attempts is a new record for me - and must remember to get more from the pharmacy, since I go through so many every time.
     
    Last edited: Aug 27, 2014
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Funny, last night I had a very vivid and explicit dream of having a catheter put in totally without pain and then having the clinic staff serve me a delicious meal during the infusion.

    I must have been cyber-psychic sympathizing with you!:rofl:

    Sushi
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I can't 'like' your last 2 posts as they don't sound at all pleasant, to put it mildly. Ouch ouch ugh!

    Coincidentally, my axillary (armpit) lymph nodes have been aching every day lately, which they don't usually.

    My HOPE is that this means something like: my immune system is resetting itself. Maybe this is exposing previously hidden pathogens and/or the immune system is having a go at them.

    But I SO wish I knew!

    BTW Sean Connery spoke a few words to me in the 1970s, the most memorable being "Thank you, operator." This former international telephonist was all of a flutter! (And I can't find a suitable emoticon)
     
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  4. Valentijn

    Valentijn Activity Level: 3

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    :woot:
     
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  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Maybe you can start a new trend - infusion cafes.
     
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  6. Daffodil

    Daffodil Senior Member

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    my friend does infusions at a hospital in Reno. they give her a menu and she can order food!
     
  7. Valentijn

    Valentijn Activity Level: 3

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    I felt pretty cruddy again last week, starting a couple hours after the infusion on Tuesday evening and lasting until the following Monday afternoon. So I get about 24 hours of feeling decent every week before the next infusion starts :rolleyes:

    The nurse today was the one I see the most, but she couldn't get a cannula in after 4 tries. So she called the hospital, and they sent an EMT out. I bet the ambulance made an interesting first impression for the new neighbors :wide-eyed:

    Anyhow, the EMT did a bunch of prodding and squeezing and smacking, tried once to get a cannula in my left hand, and decided my arms and hands are pretty hopeless. So I now have a cannula hanging out of my right foot for the next 50 hours or so. It's not painful, except when I walk ... I guess I'll have to cancel my plans to run a marathon tomorrow :rofl:

    Fortunately my fiance's mother is staying with us for a few days to help take care of me and make dinner and such. So I can get away with walking even less than usual for a couple days.

    And now I'm exhausted and going to lie down until the infusion finishes.
     
    Last edited: Sep 2, 2014
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Ouch ouch ouch and oh dear.

    Not good. Hope things improve soon. Thank goodness your sense of humour is still alive and well.
     
  9. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Valentijn Ouch for your poor foot:eek: and hope you feel better soon!
     
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  10. Valentijn

    Valentijn Activity Level: 3

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    I'm learning to walk funny in entirely new ways :D
     
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  11. xks201

    xks201 Senior Member

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    So is Kenny not doing his job?
     
  12. justy

    justy Senior Member

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    Valentjin has her IV infusions at her home, as prescribed by Dr De Meirleir.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    Huh?
     
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  14. justy

    justy Senior Member

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    Hang in there @valentjin !

    How many more weeks to go now?
     
  15. Valentijn

    Valentijn Activity Level: 3

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    One!
     
  16. justy

    justy Senior Member

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    Horray !! :):thumbsup::balloons: Hope you feel better when it all ends and can have an M.E style party! (mine usually involve once a year inviting some friends round for dinner - which they inevitably have to bring, or else I start cooking and someone else has to finish it, and then they all sit and get pissed while I go to bed at 9pm)
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    And for our American friends, pissed means drunk, not annoyed!
     
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  18. Valentijn

    Valentijn Activity Level: 3

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    So last week sucked. With the cannula in my foot, I really couldn't walk, and hopping around was very difficult, precarious, and painful. So I started limping around while leaning on a chair which has felt pads on its feet, and that worked a little better. Still exhausting though. The nurse was also very late getting here to do the Thursday infusion, due to a widespread scheduling meltdown, so it took me even longer than usual to get the bloody cannula out :meh:

    And then I was pretty sick for the rest of the week, probably with a bit of PEM added to it from having to rely so heavily on muscles on I don't usually use. Fortunately my fiance's mother was here while I couldn't walk, so I literally only got up to use the bathroom.

    This week there was a new nurse, who used to work at the airport in Amsterdam, and in an ER. She got the cannula in on the first try :jaw-drop: :balloons: :lol: And it's in a good location on my left hand, which is extra useful since I got a weird rash on my right hand with a bunch of little water blisters a few days ago, and it hasn't fully healed yet.

    My fiance's mother is here again for a couple days, so again that should be a big help. Though at least I can walk around a bit this week :D Still pretty exhausted though, and not up to cooking or doing much of anything other than using the toilet and making a cappuccino once in a while.

    So just two more infusions, then I should be done for a while. And back to Brussels on Sept 16th for an appointment with KDM.
     
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  19. Valentijn

    Valentijn Activity Level: 3

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    As of 15 minutes ago, I'm done with the IV infusions! Hopefully to never ever do one again for the rest of my life :D

    I haven't been feeling crappy after infusions this week, and am even feeling a bit decent today. So hopefully that's indicating that I'm done herxing, which hopefully means I've not got any Lyme bacteria left to kill off.

    When we're sure we don't need them anymore, we'll call the home care to let them know, and they'll come pick up their folder and such, and any spare bits we don't need.
     
  20. RML

    RML Senior Member

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    So happy for u! You must be delighted to be finally finished with it all. Best wishes for future improvements! x
     
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