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 seeing patients in Reno on Sept 5th and 6th

Discussion in 'ME/CFS Doctors' started by Gingergrrl, Aug 16, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I had contacted KDM's assistant over two months ago re: possibly setting up an appt with KDM in Reno and just got an e-mail back today! I no longer need the appt as I got established with care at OMI. However, I wanted to pass on the info in case anyone else needs it.

    The e-mail had a generic flyer to download which said that KDM will be scheduling patients in Reno on Fri Sept 5th and Sat Sept 6th from 8:45 am to 5:00 pm. The consults will be at the Whittemore Peterson Institute at the University of Nevada.

    It said if anyone is interested in an appt to send an e-mail to irads@ehmb.be and to include name, date & time you prefer the appt, if you are a new patient, address, phone number, and date of birth.

    It said the first consultation is $700 and follow-up appts are $350 and that an initial consult is approx 45 min. It also said that patients can schedule the "Lactose and Fructose breath test" and if other tests are performed, the labs will invoice you later and they will need credit card info in advance.

    I am assuming once you get your appt time, that they will send you follow-up medical forms, etc.
     
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  2. Sushi

    Sushi Senior Member Albuquerque

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    @Gingergrrl

    Thanks, good to know. They waited to send you this email until they knew when KDM would be in Reno. Complex schedule, difficult to plan when he will get a gap to travel to the States. Looks like he is just taking a few days off from the clinic in Brussels.

    Sushi
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @Sushi, I totally understand and I could tell from talking to the woman at WPI back in June, that they really didn't know yet when KDM would be back in Reno. In my case, it all worked out for the best and I know I ended up where I was supposed to for treatment.

    But I am hoping there might be someone just starting this journey who lives near Reno where this is a perfect match for them!
     
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  4. NilaJones

    NilaJones Senior Member

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    Thank you for posting this, @Gingergrrl! I just emailed them, to see if any appointments are still available.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @NilaJones I got another e-mail at a later date saying that KDM would also be coming to Reno in Nov. I did not save that one so do not know the dates but you should definitely call or e-mail them if you are interested. Best wishes!
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    It is the 6th and 7th I believe.

    Sushi
     
  7. Strawberry

    Strawberry Senior Member

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    Is "KDM" a doctor that I should see to rule in or out CFS? If so, how often does he come to the states?
     
  8. Sushi

    Sushi Senior Member Albuquerque

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    KDM is Kenny De Meirleir from Brussels--one of the handful of ME/CFS specialists in the world. He got a US license a bit over a year ago and comes to Reno every few months, as he can fit into his schedule. He doesn't have a set schedule for coming as it depends on his other commitments (he also travels to Norway to see patients and is involved with research and conferences), as well as coordinating with the patients who want to see him in Reno.

    I'd guess he has been there about 4 or 5 times in the last year. I will probably see him in Reno in Nov. as I have been his patient for a few years.

    If you are considering it, take into consideration that testing will be expensive--especially the first round--as it is very thorough, and your insurance is unlikely to pay for it.

    Best,
    Sushi
     
  9. NilaJones

    NilaJones Senior Member

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    Woo! I think I will be there, too. Maybe we could meet for lunch, and anyone else from PR who is in town :).

    Is he likely to redo tests that I have had before? I have a had a LOT of stuff, because my local doc and insurance are good about testing, if not much treatment.

    Is there a list of tests we can have done at home, where insurance covers, before we see KLM?
     
  10. NilaJones

    NilaJones Senior Member

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    KLM will be in Reno November 7th and 8th, with 30 minute time slots for each patient.

    @Sushi: That seems a very short time (though understandable!). What is most important for us, as potential patients, to bring up? Or is the appointment really meant to be just a meet and greet and scheduling of testing, with real discussion done by skype or something later?

    Can some of the tests KLM orders be done by local labs after we get home, if not before?
     
  11. Sushi

    Sushi Senior Member Albuquerque

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    I'll see if I can answer your questions :). First, KDM, not KLM, or someone could get confused! The 30 minute appointment is the minimum. If he doesn't have a crowd waiting, he may spend more with you. It is definitely not a "meet and greet," but all business. Bring all your relevant lab results. He will redo things that change quickly, but not things that don't.

    The nurse will give you an intake form to fill out before you see him with very detailed questions. The consult will be to go over your history, symptoms, and earlier lab findings and a physical exam if necessary. Then he will order the tests he thinks are necessary (and his nurse will go over them with you so that you can say if some are too expensive, or you don't want them for some other reason.)

    Then they will draw blood. I ask him to write up separate lab requisitions for tests that can be done in the US under my insurance. He didn't have any US lab requisitions last time I saw him, so this time I will bring some. (My local doctor had to requite them on Quest forms).

    In Brussels, appointments are even shorter but, if I am very organized with my list of questions, the time has always been adequate. Being very organized is extremely important in order to use the time well. There is no standard list of lab tests he orders as it depends on the individual's history and symptoms. But he will always want a recent and complete CBC, so you can get that done ahead. If you have a local doctor that will work will him, this is a big plus.

    If you opt for the lactose and fructose tolerance tests, each will take a whole morning and you would have to let them know in advance.

    Yes, it would be great for the PR members to get together there. Last time some of us had lunch in the little cafe on the ground floor of WPI. My appointment is Friday after lunch.

    Best,
    Sushi
     
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  12. Sushi

    Sushi Senior Member Albuquerque

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    If anyone wants to make an appointment with KDM on Nov 7 or 8 in Reno, here is the email address to write to: Charlotte Francois <charlottef@ehmb.be> I got an appointment from her overnight.

    Sushi
     

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