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Dr KDM, Dr Patricia Salvato and Dr Lucinda Bateman

Discussion in 'ME/CFS Doctors' started by LivingwithFibro, Aug 17, 2015.

  1. LivingwithFibro

    LivingwithFibro Lily

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    Between the three of them, who have you consulted with? Please talk about your experiences and which one you think is the best.
     
  2. JaimeS

    JaimeS Senior Member

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    I've only ever seen KDM. Here are my impressions.

    KDM is very thorough, intelligent, and though I've seen others call him 'cold' or 'disinterested', I
    a) Didn't come there for sympathy
    b) Found him easy to connect to. We laughed a few times over the course of the appointment.

    KDM's general attitude is, "oh, yes, I've seen this a million times before, I understand it perfectly", and some people have a very emotional reaction to this. The idea that someone might actually know what they're talking about can be earth-shattering, especially for long-term patients. Some people get angry - how can you know, no one knows, how dare you claim you know?! - and others burst into tears. I gave him my Skeptical Eyebrow, but that's just because certainty isn't my particular emotional 'hot button': sympathy is. So we got along quite well.

    The moment the appointment was over, I could see the more analytical part of his brain take over: it was like I had been filed away and therefore dismissed as a physical presence. Again, he was never rude to me, and I didn't take it at all personally!

    KDM will test for everything, and I mean everything. He's very particular about his tests, where he gets them - has done a lot of personal research in terms of which labs get the same results consistently (I have heard from others that he has sent labs separate samples of the same patient's blood, just to determine whether or not the results are consistent.)

    He is expensive, but only in comparison to your GP. For a specialist, his prices are very reasonable - but expect to pay a lot out-of-pocket for testing if your insurance refuses to contribute. Your testing will cost five or six times as much as the initial consult itself... or more. If you discuss finances with him, however, he is willing to adjust how much he tests for at once, or use another lab you have located if it is cheaper, or so I hear.

    Once he has the data, he attacks whichever problem he sees as most severe. He uses whichever methods have good data: allopathic, alternative, it's clear he doesn't care so long as it works. You'll see cutting edge stuff you've never heard of along with a supplement you could obtain from iHerb, along with lifestyle recommendations like drinking a lot more water.

    When you see him again, he'll reassess: you might start attacking the next problem down the line, or continue with the first one if he feels it hasn't yet resolved.

    You have to take the good with the bad, though. His schedule means he's in and out of the States at seemingly random intervals, which has negative consequences for patients who try to see him in Reno and patients who try to see him in Brussels. His staff is scattered because they are overworked, and their response time is atrocious as a result - unless you say you have a health emergency, in which case (I have been told) they are very fast to get back to you.

    Wait times for diagnosis were rough for me. I'm used to bloodwork coming back in a week, and genetics analysis taking a month to six weeks. My results from KDM came over three months after my appointment. As someone who has an illness that isn't well understood even by my family and friends, it was clear they kept thinking I'd been taken for a ride, or even that I was hiding my data because it showed nothing out of the ordinary - because no doctor here in the US ever takes that long to get back to you, no matter how busy they are.

    Speaking of American things, some of KDM's recommendations are difficult to obtain in the US. With a little detective work you can figure out most of it, but I've just accepted at this point there are some things I won't get my hands on. For the rest, I would recommend searching here on PR before beating your head against a wall as I did; there are lots of recommendations for how to obtain unusual meds. In the end, the abx was easiest: I just found a reputable Canadian pharmacy and they shipped it to me.

    Last but not least, KDM changes his protocol dramatically every few years. A lot of people could take exception to this. On the contrary, I think he's one of the few non-dogmatic therapists out there who is not so emotionally invested in his treatment plan being THE 'right one' that he refuses to change it. Instead, he shifts his protocol as new research comes in, and I feel that this is the mark of a good practitioner with an open mind.

    In the end, would I recommend him? Yes, without reservation. He's a good guy, doing good work, at reasonable prices, and he really is quite brilliant. If you can deal with the long initial wait for info, and the headache of trying to locate what he recommends, and the headache of communicating with his overworked staff, then you're going to get an excellent practitioner and a sensible, workable treatment plan that has a decent chance of making you feel better. Though I've just started some of his protocols, I've heard from other, longer-term patients that they have experienced marked betterment of their condition through working with him. I know of one person who went from being bedbound to being back at college part-time, which is just incredible, though not typical.

    I am sure that there are patients who have not improved by working with him. I hear them mentioned, but I seldom see them on here. There are also a few who consistently ask for 'proof' that his methods work. He publishes once in awhile, and he was part of the Canadian Consensus group. His published research plus patient testimony is the only 'proof' we have; and since no practitioner has 'the answer' in regards to ME, it's the best we're going to get. In the end, you have to make the leap to decide to see him or not, though to me, whether or not one ought to see an ME specialist of some stripe is a non-question. If it is at all within your means, you must do so. GPs have no earthly idea, nor do endos or neuros, despite this disease really being in their respective wheelhouses. Finding someone ME-literate to work with is essential to our well-being.

    Hope some of this helps, and good luck,

    J
     
  3. JaimeS

    JaimeS Senior Member

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    Oh, and search the boards! The information is out there.
     
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  4. A.B.

    A.B. Senior Member

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    The consult is €80. Tests are about €2500. I paid more than that.

    PS: when visiting him in Brussels.
     
    Last edited: Aug 17, 2015
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  5. JaimeS

    JaimeS Senior Member

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    Wowwww. The initial consult is a LOT more in the US.
     
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  6. Sushi

    Sushi Senior Member Albuquerque

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    He has to have malpractice insurance in the States which costs LOTS! And, he doesn't own the space he works in, as he does in Brussels--so more overhead. Also, appointments are longer in the States. I've seen him both places.
     
  7. LivingwithFibro

    LivingwithFibro Lily

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    Thank you, guys! I might be seeing KDM very soon in Belgium and booking an apt as I finally have the cash I need. :D
    I had the option to see these two as well but I went for KDM...I don't know, that's what my heart tells me. I do not want emotional support from a doctor either, I think KDM knows what he is doing.... and the best part is that he is up to date so I don't mind him changing my protocol.

    Thank you much for posting your experience! I cannot wait to speak to you guys and maybe meet some of you there.
     
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  8. JaimeS

    JaimeS Senior Member

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    Appointments are definitely longer in the States! I have heard people in Brussels say five to fifteen minutes for the first appointment, which is primarily for tests. In the US it runs very differently due to necessity: he can't haul his breath test machinery to Reno! Therefore doctor listens to every symptom and makes some rough guesses as to what might be going on, and then orders the tests after he's judged what you're most likely to have. The appointment was to be an hour, I think, but as I recall he went quite a bit over that to look at my MRI and cluck his tongue and shake his head at it. ;)

    This is just if anyone in the US is curious, now that I know you're in Europe. :)
     
  9. LivingwithFibro

    LivingwithFibro Lily

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    I read your review in detail again, I totally understand what you mean. I think I have family and friends for emotional support so why would I want that from a doctor? I can understand people need to be reassured but that's not really his job. And as you said, if he was giving therapy sessions or really becoming involved with the patient on an emotional level he wouldn't be able to do what he does at a fast pace. If you had said the same thing to me last year I would be offended but now I truly understand. I also think this kind of particular attitude might not be good for healing.

    Regarding the testing, would you say 3,000 or so euros would cover it? The initial consult is 80 euros if I am correct.

    Is it true that he emphasizes greatly on the gut? and methylation? What about diet?

    I am not bedbound but I do have CFS, I can do yoga and even dance for a bit but there are some days which are worse.... I always have pain no matter what and I am 34 kgs. Yes, 34 kgs. and I am 20 years old. I guess this is some sort of gut dybiosis or infection. I hope he can get to the root.

    I have e-mailed the clinic in Belgium and awaiting a reply.

    Thank you so much for your review as it has greatly put things into perspective for me.
     
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  10. LivingwithFibro

    LivingwithFibro Lily

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    Just saw your reply. So you are a patient of KDM too, can you talk about your experience?
     
  11. JaimeS

    JaimeS Senior Member

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    I think not everyone is in that position. I'm lucky (?) enough to have CFS or some version thereof run in my family - we've all been through this before. Miraculously, I have a group of women with whom I do 'book club' which is really an excuse to go out together for some wine, dinner, and intellectual conversation. They all know I'm sick and were very sweet and understanding when I had to pick up and leave in the middle of a dinner, once. I have a closer friend who listens to me b!tch about my illness and never once rolls her eyes. I feel very blessed. To be honest, I feel more like I dodged a bullet somehow. I could be doing this alone, as so many are.

    Or at all. Burnout is a definite possibility!

    I think it's a fine line between empathy and sympathy. Empathy is good; sympathy makes me feel sorrier for myself. Since I'm in a tough situation in the first place, encouraging me to think of myself as weak and disabled isn't a good thought pattern (beyond what is necessary to take good care of myself and not overdo.)

    Maybe another 500-700 Euros. Mine was high, but I was under the impression at the time that my insurance would pay for my testing, and informed him he could go to town.

    Yes, he focuses on the gut; however, I think it's what he focuses on first, and I'm in complete agreement. How can you fix anything else if you're having difficulty taking in nutrients and processing them? I went to an alternative medicine school and my profs were fond of saying, "you can't go wrong by addressing the gut and the liver" and "the gut first". I think it's just sensible.

    So far as I know, he is not the guy to go to for methylation or diet, but again, I'm a new patient. There's a decent chance we haven't gotten there, yet. My sole lifestyle recommendation was to drink two liters of water a day.

    Then you are where my mother was when she first realized she had CFS. Her issues were 99.9% gut! Everything she ate made her sick. I hope you get an appointment soon! KDM will be in Reno in September, so hopefully you can go before that. I've heard the wait for an appointment can be longer in Belgium, though.

    You're welcome, and good luck!

    -J
     
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  12. sarah darwins

    sarah darwins I told you I was ill

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    @LivingwithFibro - generally you have to call the Brussels clinic, or have someone do it for you, to make an initial appointment. They probably won't reply to an initial approach by email. They get so many emails that I think maybe they use that as a way to make sure you're serious!
     
  13. justy

    justy Donate Advocate Demonstrate

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    Around 3,000 euros for testing is pretty normal. You can go over the ones he orders with the nurse and cut it down if money is an issue. He is likely to be looking at the immune system, infections and the gut, based on what you have told him.

    You can wait forever for the clinic to get back to you by e mail so is uggest a follow up phone call about 5 -7 days after sending the e mail and say you are a new patient and want an appt. Im going to be there on the 27th October (returning patient)
     
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  14. Sushi

    Sushi Senior Member Albuquerque

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    On the other hand he tries to present you with his test findings in the most hopeful light, assuring patients that their conditions can be treated.
    He certainly investigates the gut thoroughly and often starts there with treatment (as others have mentioned), but he doesn't emphasize methylation. As far as diet, he usually runs a food sensitivity test and asks you to follow the results, but he doesn't stress diet much other than that.
    Agreed. And since he has ME/CFS in his own family he certainly has empathy.
     
  15. LivingwithFibro

    LivingwithFibro Lily

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    Thank you! I also think the gut is the first place to be targeted. That's why I took an apt with a GAPS practitioner (you may know about GAPS) for dietary recommendations and hope to follow the diet along with KDM's prescription.

    How is your mother now? I hope she is better?

    Thank you so much! Best wishes to your and your mum too :)
     
  16. JaimeS

    JaimeS Senior Member

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    Thanks @LivingwithFibro -

    Both my mom and my sister have shown improvement over time. Despite our incredibly similar genetics, we had different systems affected:

    My mom was digestive with immune. I'm sure we all have immune issues, but she had the swollen lymph nodes and raw sore throat when she was doing poorly. She is essentially vegan-vegetarian and much recovered. Despite feeling worn down often, she is far more active than other women her age. Walks 3 miles every morning! Dx with 'Epstein-Barr', which people say has the highest recovery rate out of the many subsets of CFS and ME.

    My sister has musculoskeletal, reproductive, hint of NS. She has a mostly 'fibromyalgic' profile, though what she was diagnosed with is 'Epstein-Barr Syndrome'. Tired constantly, in mild to moderate pain always, had endometriosis and eventually, a hysterectomy. Restless leg, which mom has, too. Still - able to take trips to see us, a 10 hour drive away, spend the next day sleeping. Still capable of it! Never got as bad as mom. And, may I say, she is the opposite of the psychosomatic conception of CFS: bright, cheerful, go-getter type with a PhD.

    Then there's me. Almost purely NS problems, with a hint of digestive. Back of neck pain always. PEM. Breathing problems.

    So weird how environmental differences have separated us, despite having a LOT in common, genetically. No matter what anyone says, there is a definite genetic component to this illness. That's why Valentjin and I keep going back to the SNPs....

    Thank you for asking!

    -J
     
  17. NilaJones

    NilaJones Senior Member

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    Excellent writeup, JaimeS! My perception of him is much the same.

    I have a sibling with the samy sx, roughly, and we provide great support for each other. It is so good to talk to someone who knows what you are experiencing, and to share what helps.

    There is a huge overlap in CFS/ME and EDS-3, many people have dual diagnoses. And EDS is a genetic disease. It runs in the paternal line, though.

    Are there also a lot of families with CFS and no signs of EDS (increased flexibility, especially in youth, etc.)? Or with CFS on the maternal side only?
     
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  18. JaimeS

    JaimeS Senior Member

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    I was first dx with 'Benign Joint Hypermobility', which is ED 4 (?) by any other name. No one in my maternal line is flexible like I am, though.

    -J
     
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  19. NilaJones

    NilaJones Senior Member

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    That's EDS-3, not 4, and it's the one associated with CFS :). How is your father's mom?
     
  20. JaimeS

    JaimeS Senior Member

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    Ninety-three this year and in amazingly good health. She had breast cancer (at 93!) had an operation, and came through it just fine. Still sharp as a tack, too.

    My father's side of the family has insanely good health.

    -J
     
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