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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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Any recommendations for first appointment with KDM?

Discussion in 'ME/CFS Doctors' started by Spinney Lainey, Apr 27, 2014.

  1. Spinney Lainey

    Spinney Lainey Senior Member

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    I am going to see KDM for a first appointment in a couple of weeks. Does anyone have any suggestions for how to get the most out of this session with him? @Sushi - please would you mind tagging the other people that have been to see him? Many thanks
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There are many here who see KDM but they may not all wished to be tagged! :confused: So I'll let them respond themselves when they see your thread.

    I think the most important advice is to be very well prepared: have some well-thought out, written questions, bring copies of all relevant lab tests, if you have memory problems bring someone like a family member to help you make notes and, if you see him in Brussels, realize that you will only have limited time with him as he is so busy there. In Reno appointments have been longer because his schedule is not so packed.

    Are you going to see him in Reno or Brussels? There are different things to keep in mind for both locations. But for both, don't expect to get your report and labs for 3 months or more. While you don't have to wait very long to get an appointment, getting the results and a protocol do take this long.

    Best,
    Sushi
     
  3. Valentijn

    Valentijn Activity Level: 3

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    If you have the fructose and lactose tests done, you'll be sitting on your butt in the waiting room for about 4 hours each day. I'd strongly recommend bringing something to keep you and family members busy for a while. Also you have to be fasting before and during the tests, so it's a good idea to have a plan in place for eating a lot afterward.

    If driving to the clinic in the mornings, be aware that traffic in the area can be quite bad. It's good to give yourself an extra 20-30 minutes to get there.

    On the first day you'll be given instructions for how to have the stool test done, so it might be a good idea to bring along equipment for that. I think a slightly saggy layer of plastic wrap over the toilet bowl (under the seat layer) sounds like the best approach, then something to seal the plastic wrap in to dispose of it in the trash. I ended up having to improvise a poo-catcher using a tissue box lined with several layers of toilet paper :meh:
     
    Last edited: Apr 28, 2014
    Spinney Lainey and justy like this.
  4. justy

    justy Senior Member

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    Hi Spinney - I also have an appointment in a couple of weeks and so far I have made some notes on questions/issues I want to discuss with him and also have written 2 documents with bullet points that I would like him to read before I ask questions/during the appt.

    I have one document with a history from childhood until now as my history is long and complex, written in short bullet points and broken down into childhood/first onset/remission years and then relapse.

    The second document has a list in chronological order of any Doctors I have consulted, tests with brief results and a brief over view of treatments tired so far and results of this (again in short bullet points)

    I have also included a long list of symptoms, which I have kept updated over the years, which he may or may not wish to peruse and a copy of the latest and most relevant tests, which in my case are Mito tests from Dr Myhill, translocator protein tests from Dr Myhill, Genova stool test and saliva cortisol and DHEA test.

    Sounds like a lot, and I don't expect him to read it all then and there, but I would like him to look at the history and brief overview of tests/treatments so far. I have been told he takes information in and processes it very quickly, so I think what I have prepared will be OK.

    Then I have a few questions/areas I want to discuss, which for me are:

    What does he make of my increase in brain/cognitive symptoms

    How would he recommend dealing with hormonal issues - is he happy for me to see a herbalist to try and balance these issues or will they sort out downstream of treatment with him?

    heart concerns/issues e.g. palpitations severe breathlessness, especially when bending over - what does he make of this (he is a cardiologist)

    Would he diagnose me, based on symptoms with M.E or does he think there is something else going on? will he try and get to the root of the issue, even if M.E is not diagnosed?

    How does he deal with patients who seem to have adverse reactions to everything they take or who can only tolerate tiny doses of medications and supplements, how will this interfere with any possible treatment?

    So how to cram all this into the short time allotted - I think if I don't ramble and I know he is brief then that should all be fine.

    Good luck with your appointment, I think we will just miss each other.

    Justy.
     
    merylg, Spinney Lainey and Valentijn like this.
  5. RML

    RML Senior Member

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    I also brought a document summarizing the main points and information. Perhaps bring a second copy for yourself too. I wish I did this as after I handed it over to him, I no longer had information at hand easily. Using my brain that early in the morning ain't great!
     
    justy, Spinney Lainey and Sushi like this.
  6. Spinney Lainey

    Spinney Lainey Senior Member

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    Many thanks for your helpful suggestions! Will let you all know how it goes!
     

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