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Have here anyone seen KDM at WPI? Can you tell me about your experience?

Discussion in 'ME/CFS Doctors' started by Marianarchy, Dec 30, 2013.

  1. Marianarchy

    Marianarchy

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    I have an upcoming appointment to see KDM at The Whittemore Peterson Institute in Reno, Nevada. Has anyone here seen him at this location? I'm interested in finding out about the cost of the lab testing. Did he use a lab in the US or ship the blood overseas? Also, will WPI or KDM make Gc-MAF available to patients seen in the US? Please feel free to send me a private message if you are not comfortable posting on this thread.
     
    merylg and vli like this.
  2. alexk201

    alexk201

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    Hi Marianarchy, I am also planning on scheduling an app. with him.......did you find out any information that you were were looking for?
     
  3. Clodomir

    Clodomir In hibernation mood

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    Hi,

    He see patients the last week of january in Reno. See the website of the WPI.

    Clodomir
     
  4. Marianarchy

    Marianarchy

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    I have an appointment scheduled the last week of January. But no, @alexk201, I haven't found out any of the info regarding the cost of the lab testing or availability of Gc-MAF as of yet. The only info I received from KDM's office regarding testing stated that I would need to provide a credit card number to cover the cost of testing. I have no idea what the testing will cost, so I'm a little worried...
     
  5. alexk201

    alexk201

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    I also wanted to make an appointment for January, but the only info I got was that he charges $700 for the appointment. They could not tell me anything about the cost of labs or if any thing is covered by insurance. That is worrying as we have no idea what labs he is using and the cost. I know if he uses labs inside the US the fees can easily exceed $10,000
     
  6. filfla4

    filfla4 Senior Member

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    $700 for the appointment!! That's ridiculous! In Brussels the charge for an appointment with him is only around 80 euros. Of course then the lab tests and cost of meds put the whole thing up.
     
  7. maryb

    maryb iherb code TAK122

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    @fifla4
    is that for just the first appt? it may include basic testing. what about follow up?
    Doesn't seem to be a lot of information coming out about it.
     
  8. Thinktank

    Thinktank Senior Member

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    Is that price set by WPI or KDM himself? For the $700 i guess a lactose + fructose breathetest, EKG and spirometry are included. Perhaps also the 96 IgG food intolerance test from US biotek.

    The labtests are probably cheaper than the ones in Belgium.
     
  9. Firestormm

    Firestormm Guest

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    I have to say that I find the website information in general very disappointing from the WPI: http://www.wpinstitute.org/medical/DrDeMeirleir.html

    If they can't tell you in advance what the cost is going to be before taking your credit card details that would be worrying indeed.

    I don't have anything to compare the $700 to, other than the above stated charge of 80e from those who visit him in Belgium. Maybe $700 is reasonable for the USA - but you'd think as a prospective client you would be informed in advance what an initial consultation might entail.

    I doubt if any tests would be included in this charge - it would be for an initial consult I'd guess. Unless he is happy to assume that everyone who visits has ME and can be thus tested the same, or that his tests are able to determine a diagnosis and/or course of treatment.

    I don't have the best of opinions of KDM though I have never been a patient of his, but any more detail you might provide would be useful as I like to stay abreast of developments.

    Thanks and I hope your appointment leads to some improvements in your health.
     
  10. alexk201

    alexk201

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    The $700 fee is ONLY for the initial consult, nothing else included. I guess this is because this is a standard for the US when a doctor has lots of qualifications.
     
  11. acer2000

    acer2000 Senior Member

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    So they don't take insurance/medicare?
     
  12. Eucalypta

    Eucalypta Guest

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    lala-land
    I was the first patient that got an appointment with KDM in Reno, in the first week of November. It was strange, the WPI building was completely empty and it was just me, my husband and KDM, no nurses no one. He was there to set up his office etc but let me know he would loved to see me.

    I can confirm the $700 fee for the appointment but make sure you discuss the lab tests that are going to be done. I neglected this. I thought that since there is a large lab at WPI that he would use that for my blood tests and I could get it reimbursed from my insurance. That was not the case. They should have told me beforehand when I informed about the costs that he would take my blood back to Belgium and have it tested there. They did tell me that the costs of the lab would be added to the $700 but in no way I suspected that this would be RED labs in Belgium.

    I think you can imagine the shock that I got when my credit card company called me that an European 'Marketing' company wanted to charge an amount of $5000. They thought is was a fraude and I thought so too until they send me the details that said RED labs and then a light bulb came on.

    I waited, they had not send me an invoice or nothing so I just waited, figuring they would now contact me if the wanted me to pay. And yes after 3 days they contacted me and send me the invoice. My husband had a look at it and said that we as US residents do not have to pay European sales tax, in this case over 20% of the bill. So we contacted RED and got nowhere. They said we were not the first one trying to get the sales tax removed but that the Belgium law says that 20+% sales tax need to be paid over services. if we didn't pay I would not get my results released.

    We decided not to fight it but will contact the tax office to get the sales tax reimbursed.

    After I paid I heard nothing. Radio silence.
    When I saw KDM he said that we would have a telephone consult in 6 weeks to discuss the results of the tests but half december came and went and I figured with the Holidays especially in Europe it was no use in trying to contact them. I'm from the Netherlands myself but live in the USA.
    First thing I did this week was to write and email and request my test results before the phone app. so I can ask questions and a date for the phone app. to discuss treatment plan.
    Just a few hours ago I received my tests results(not good, more red than black) and a date next week for a phone consultation.

    About the appointment I had with him. I liked him, but I knew that before I had the appointment. We speak the same language so that makes a difference for me. First thing to go when anxious and in a brain fog is my ability to speak decent English.
    I had send him my medical records before the app; so we could save time instead of going over that.
    He looked at me and came closer and looked at my face and said I had the classical Borrelia mask. I always thought I had Lupus because that's how my face looks, the red mask. But he explained to me how it works and said it was probably in a very late stage. I have been ill since 1970 and diagnosed with ME in 1984 in the Netherlands.
    As a young child I was always ill, we lived in the forest, smack down in the middle, so being bitten by a tick would be nothing my mother would have been worried about. But besides that TBI are also transmitted by other nasties then just ticks of course.

    After questions and answers he told me that on top of my ME he thought I had Babesia and Borrelia and another I can't remember. To say I was shocked and not a happy puppy is an understatement.
    I went to see him and was hoping to go home with a treatment plan doe my ME. I am bed and wheelchair ridden. Instead I went home with 3 new diagnosis.
    In order to get from Oregon to Nevada my husband rebuild our truck and build a bed in the back so I can travel lying down but still I had a major relapse. We were there a week ahead of my appointment so I could recover a bit and that helped. if I had to travel back and forth in a short amount of time I think it would kill me.

    I'm not sure what he is going to recommend. When I saw him he said IV ABX because it's a late stage and oral abx won't work with me. The time I did ABX for my Cpn it resulted in a full blown systemic yeast infection that after 3 years is still bothering me. He would like to do this in Reno but I'm not sure how to manage that.

    Will keep you posted. If you have any questions let me know.
     
  13. Firestormm

    Firestormm Guest

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  14. Eucalypta

    Eucalypta Guest

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    lala-land
    Asking questions at WPI about the practice of KDM will results in no answers. They don't know. He will bring or train his own staff that is what I know because he told me so. I was hoping that he was going to use that beautiful infusion room etc for treatment but I'm not sure it that is the case if he is going to be there only for a few days and no staff yet.

    Maybe they want to see how things are going, if many patients will come to see him before they facilitate insurance etc. With providing insurance options comes a lot of rules and regulations I'm sure you will know. Instead of seeing him for an hour of 90 minutes it will be reduced to insurance rules to 10-15 min. I doubt if that would be workable situation for him.

    I see my own physician in Portland, who visits me at home and I get that reimbursed from my insurance. So you could visit him and than try to get it reimbursed. That is what I intend to do. Not sure what they will think about the Belgium labs though. I showed the list of tests that they did to my own doc who said that about 75% of the tests could have been done by Quest, the others are developed by KDM self.
    So I think my insurance will balk at the invoice. Maybe reimburse the KDM tests but not the ones that could have been done here. Lesson learned. Make sure you discuss this before agreeing to be tested.
     
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  15. maryb

    maryb iherb code TAK122

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    @Eucalypta
    thanks for all the info I'm sure many on here will appreciate it. Good luck with your treatment as well, hope you get some improvement.
     
    ggingues likes this.
  16. alexk201

    alexk201

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    I just spoke with his Belgian Office.....they said testing ranges usually from $3000-$5000.
     
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  17. SOC

    SOC Senior Member

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    Yeah, well, that's what we get for having for-profit healthcare rather than national healthcare or socialized medicine. Everything medical here in the US costs WAY more than in most European countries. $700 is not all that unusual for an initial appointment with a specialist. Usually follow-up appointments cost less but not always, I imagine.

    Lab tests for ME/CFS patients typically run in the thousands of dollars. I've seen 3 different ME/CFS specialists in my time with this illness and it has been the same for all of them. The high cost of tests is partly why our GPs won't run the necessary tests -- they don't want to listen to us, the insurance company, or the HMO complain about the cost. At least the specialists will do the tests we need. It's unfortunate that they cost so much, but they do. That's not the specialist's fault.

    It is typical that you don't come away from the first appointment with a treatment plan. The doctor needs to see the results of all the lab tests before s/he can decide what to do. Getting all the results in can take 1-3 months. That's life with this illness.
     
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  18. Eucalypta

    Eucalypta Guest

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    lala-land
    Yes, that is about what I wrote. They must have decided to stick to testing of the blood in Belgium rather than use the WPI labs or make use of Quest for the common tests.
    I think this will be a huge issue for new patients.

    And it suddenly occurred to me that I have not discussed treatment cost with them. I now wonder how much that will be. Will My infusions take place in Reno? Not everyone has a physician who will be comfortable administrating months of ABX infusions. Or insurance that is okay with that treatment and medication.
    After all there is no definition for ME/CFS and Chronic late stage Lyme doesn't exist according to the insurers.

    I'm getting a bit worried about the follow up cost, like treatment etc.
    I have fired of an email to Belgium asking if I will need to be in Reno for treatment and are waiting their response.

    If it all needs to be paid out if the pocket it could turn out being more expensive than Ampligen.
     
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  19. Eucalypta

    Eucalypta Guest

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    lala-land

    I'm not exactly new to this. I don't agree with you. I have been diagnosed with ME since 1984. So I have seen my share of doctors and specialists in a variety of countries.

    Based on my recent extensive testing 32 vials, we tested almost anything available to us so that KDM would gave a good and recent overview right before I went to see him. My physician fully supported my decision to consult KDM.
    Based on that KDM had ideas and could gave written a treatment plan so I didn't have to wait doing nothing for the past 9 weeks except getting worse.

    As for lab tests of specialists that run into thousands, I don't agree. It depends solely on your insurance. All my lab tests have been reimbursed specialized or common. And we test every 2 - 3 months an extensive amount of at least 26 vials. I never ever received a no or a complain from my insurer. They also paid for my a Genotype testing etc.
    So not all patients have to shell out thousands for testing.
    It is a matter of having the right physician and the right insurance.

    A lot of dr's offices can be very experienced with writing the right medical billing codes so that you get your reimbursement.i guess I'm lucky that way.
     
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  20. SOC

    SOC Senior Member

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    Yes, the right insurance will pay for the majority of lab tests. The tests still cost thousands of dollars. I don't pretend there's no cost just because I don't pay all of it out of my pocket. Not everyone has insurance that readily pays for all the tests we need.

    Did you check whether you were doing the tests KDM wants before you took 32 vials? Lots of docs, especially specialists, want to do the tests they believe will give them the best information, not the ones your GP thinks the specialist needs.

    It sounds like you have a GP who suits you very well. Maybe you don't need the services of a specialist like KDM. I agree, you are lucky that way.
     
    Last edited: Jan 7, 2014

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