Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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KDM clinic appointment Monday

Discussion in 'ME/CFS Doctors' started by justy, Nov 22, 2014.

  1. justy

    justy Donate Advocate Demonstrate

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    Hi, I am in the clinic Monday 23rd for one day , will be having first IVIG and consult and echo.
    Anybody here going to be around there on Monday?
     
    Ritto, Gingergrrl, halcyon and 2 others like this.
  2. AndyPandy

    AndyPandy Making the most of it

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    Good luck @justy. Hope it goes well.
     
  3. duncan

    duncan Senior Member

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    Justy, if I recall correctly, you also struggle with Lyme and Bartonella. I wonder if they've checked you for Babesia? Just with your respiratory symptoms...

    Anyway, will he be doing anything specifically for Lyme & Company? If you've already spoken to this, I apologize. I am just curious what happens when ME/CFS clinicians bump up against Lyme. Just so you know, Enlander is my ME physician, and he wanted to treat me for both.
     
  4. justy

    justy Donate Advocate Demonstrate

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    Havent been tested for Babs, but I do have Cpn. KDM is big on treating Lyme and co infections. He offers oral abx, iv abx and herbals as well as other treatments. I am starting with ivig as he thinks my immune system is really struggling with all the infections - I also have some autoantibodies so the ivig may help this as well.

    I was meant to start with oral abx, but have problems with all 3 I have tried so far...

    Glad you are seeing Enlander, he would have been my other choice as he does SKYPE consults and visits London to see patients.
     
    ukxmrv, Sushi, duncan and 2 others like this.
  5. Hanna

    Hanna Senior Member

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    Good luck too Justy!
    Hope the IVIG will bring you some good reaction.
     
    Sushi and justy like this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    Best wishes @justy and am so glad the day has finally arrived that you will have your consult, echo, and start the IVIG. Please keep us posted and have a safe journey :hug:.
     
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  7. justy

    justy Donate Advocate Demonstrate

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    complete fail. Made it as far as checking in at Eurostar terminal - shaking by the time I got out the car then assaulted by the noise, lights, crowds, smells etc. Sat shaking, twitching and crying in my wheelchair in departures and soon realised that I am not well enough to go.

    5 hour car journey to get that far and now at my mums in west London for the night and home again tomorrow. Perversely I am jut not well enough to go to Belgium to have treatment... feeling pretty despondent and very worn out tonight. So sad I couldn't make it, but I realise that getting there, doing a whole day at the clinic and then coming all the way home again on Tuesday was too much.

    Its not as if KDM was going to give me a magic pill tomorrow to make me all better - itinvolves once a month trips like this and could make me much worse. Scared to lose any more ground. Looking forward to going home tomorrow...
     
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  8. Cheshire

    Cheshire Senior Member

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    I'm so sorry for you... Hope you'll find a solution
     
    Wildcat likes this.
  9. Helen

    Helen Senior Member

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    Dear Justy,
    So sorry to hear about how hard this was for you. I wish it could be possible to get the IVIG somewhere closer to you, or at least I.M. injections with gamma globuline to start with. A big hug
     
    justy likes this.
  10. maryb

    maryb iherb code TAK122

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    @justy
    what can I say..so sorry to hear that. You know sometimes these things are just beyond us, but no-one can ever accuse us of not trying. Rest up when you get home, tomorrow is another day.
     
    justy likes this.
  11. AndyPandy

    AndyPandy Making the most of it

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    So sorry @justy. Thinking of you.

    Best wishes Andy
     
    justy likes this.
  12. SOC

    SOC

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    So sorry to here that, @justy! :hug:
     
    justy likes this.
  13. Sushi

    Sushi Senior Member Albuquerque

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    Also so sorry but glad you stopped the trip in London rather than continuing and feeling worse. Also glad that you were near your Mum's place. But nothing like home when you are ill.

    Best wishes and :hug:'s,
    Sushi
     
    justy likes this.
  14. xchocoholic

    xchocoholic Senior Member

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    I'm sorry to hear this too. I don't know how this works but maybe KDM will have a workable solution for you. Take care. X
     
    justy likes this.
  15. JAM

    JAM Jill

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    That sucks! I hope you can figure out a safe way to get the treatment you need.
     
    justy likes this.
  16. Revel

    Revel Senior Member

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    How frustrating for you @justy :(. Hope the journey home tomorrow is more comfortable for you than today's travel experience.
     
    justy likes this.
  17. daisybell

    daisybell Senior Member

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    :hug::hug::hug:
     
    justy likes this.
  18. Kina

    Kina

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    Hi Justy, my heart goes out to you. I understand the assault by noise, lights, crowds, smells etc. My life has been made miserable and at times totally unbearable. I am sorry it didn't work out. Many many many hugs from me. I was hoping so much that you would get there to get treatment. Don't give up. It will happen. :hug::hug::hug:
     
    catly, Gingergrrl and justy like this.
  19. Daffodil

    Daffodil Senior Member

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    Hi Justy. Why not purchase the IVIG from KDM, bring it back home with you, and use a subcutaneous pump? That is what I do.
    xoxoxo
     
    Gingergrrl, justy, Hanna and 2 others like this.
  20. SDSue

    SDSue Southeast

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    Oh @justy my heart hurts for you. As hard as it must have been, you were wise to turn back. When PWME say "can't", unfortunatley we really mean it.

    I'll look forward to hearing a good report when you're able to make it! :hug: Rest well.
     
    zzz, Gingergrrl, justy and 1 other person like this.

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