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Pre-visit preparation for Dr. KDM.

Discussion in 'ME/CFS Doctors' started by bananabas, Sep 10, 2015.

  1. bananabas

    bananabas Senior Member

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    As stated in my introductory thread, I am scheduled for an appointment with Dr. KDM in November.

    They have sent me the attached file as pre-appointment info and said that no further action is necessary. However, in this file they only state "Blood tests" to the tune of 2500 €, without further explanation. I understand these will be selected by KDM based on my symptoms and history. However, I would like to know what tests I could do before going to see him and which of those I already did I should take to him. I should mention that tests I already did all came out fine (details in my original post), and it's been a while (~2 yrs) since I last did blood tests, so those are not up to date.

    I see three main categories of things I could ask my romanian GP for
    • blood tests that are commonly available
    • repeat CPET, tilt table and other "mechanical" tests
    • tests for excluding other diseases

    Could you please help fill this in? Thanks!

    On a last note, they also did not ask anything about symptoms or send any form for me to fill in. If they plan on doing it all there, they might have the surprise that I'm too exhausted to do it due to the trip.

    Oh, and any other preparatory advice for the visit is of course more than welcome!
     

    Attached Files:

  2. deleder2k

    deleder2k Senior Member

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    I'm not 100% sure, but I think he requires you to do all the tests again...
     
  3. bananabas

    bananabas Senior Member

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    Yet I heard there are some he doesn't do, like the tilt table or repeat CPET. Also, I'm not sure which differential disease tests he does.
     
  4. A.B.

    A.B. Senior Member

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    As Hip said, you might have POTS and this is worth investigating. It's treatable.

    In the clinic you will be given a symptom form to complete.
     
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  5. Gijs

    Gijs Senior Member

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    I also have POTS but it is not so treatable as you quote at all.
     
  6. A.B.

    A.B. Senior Member

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    I must admit that I'm not very familiar with POTS. My impression was that there are some treatments, but I'm guessing they're not particularly effective.
     
  7. Sushi

    Sushi Senior Member Albuquerque

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    For tests where results change quickly like a complete blood count, he will want a very recent one. He doesn't retest things that have been tested very recently.

    Getting thyroid tested would be helpful too--free T3, free T4, reverse T3, and antibodies if I remember correctly. If you can get a good virus panel done, that would be helpful. Also tests for things like C. pneum. He will test you for tick borne illnesses. You could get the LTT test ahead of time from http://www.arminlabs.com/en/tests/elispot--that is a test he respects. I don't know if you can get an inflammatory cytokine panel done, but that would be useful. Maybe others can think of some more.
     
  8. JaimeS

    JaimeS Senior Member

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    There are definitely treatments! How helpful they are depends on the individual and the source of the symptoms. POTS is, as the name states, a syndrome rather than a diagnosis that implies a distinct etiology. Therefore it can be caused by multiple autonomic 'pictures' rather than one.

    Primer on the Autonomic Nervous System by Robertson et al (3rd ed) has an entire chapter on orthostasis and two articles on POTS. It lists neuropathy, hyperadrenergia, and deconditioning as different potential causes and with different recommendations for each. You can further break hyperadrenergic POTS down into central hyperadrenergic POTS, norepi transporter deficiency POTS, and mast cell activation disorder POTS. Both articles start with a sentence that amounts to "please don't think of POTS as one illness with one cause and one treatment."

    To make a long story short (too late!) different treatments for different people with different 'kinds' of POTS means different levels of effectiveness for treatments for everyone. :)

    -J
     
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  9. Snookum96

    Snookum96 Senior Member

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    Hi Jaime,

    Is the book mention very technical? I'm interested in reading it as I find it hard to find much reliable info on dysautonomia online besides the basics. I pick up things pretty quickly but some of the more science-y stuff I have a hard time with.

    Thanks!
     
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  10. justy

    justy Donate Advocate Demonstrate

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    Personally I wouldn't bother with getting testing done before going, especially if it's difficult to arrange as KDM will do very comprehensive testing anyway. You may find it the other way round actually, that tests done by KDM can be followed up with your Romanian Dr (eg a positive Anti nuclear antibody test can be followed up with more specific tests for autoimmune conditions)

    As Sushi suggested Thyroid tests might be good to do, and maybe some basic rheumatoid tests.
    See my other post for my opinion on the CPET test, especially if you are very ill this may wipe you out for months, or in my case years...

    Testing for POTS is a good idea (or general autonomic dysfunction) KDM doesn't do this and I still wonder if I have some element of POTS.

    The testing will be more like 3,000 euros, rather than the 2, 500 they quoted you.

    They give you a tick box questionnaire to fill out - the waiting room can be hellish if you are very unwell. I always take my wheelchair in with me to sit in as its more comfortable when you are waiting around - as he expects all new patients to be in the office for two mornings doing fasting fructose and lactose breath tests. Do take something to eat so you can eat as soon as they say you can, and if you feel really bad tell the nurses and they may let you lay in the nurses room or sit in the IV room.

    Getting ready:
    I did three pages of bullet points for him to look over which included: a timeline of my illness with major events/symptoms etc on. A list of Drs seen and things tired with outcome to date, a page of relevant testing and results. Then I also wrote myself a page of questions (you will never be able to remember them all when you are in there) and I always take a pen to write his answers down. He is happy to answer questions and patient about it...usually! Be prepared for the appointment with him to be fairly short - 15 to 20 mintus is normal and sometimes even 10 - but then I always have questions...
     
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  11. JaimeS

    JaimeS Senior Member

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    It is technical, @Snookum96 - but I like it because it's arranged in the form of short, interrelated articles, so it's not really like a textbook; this makes it a lot easier to read a bit and stop without losing ground. I also think it's fair to say that the reading varies from "oh yes, of course" to "a medical degree would not help me understand this" because each article is written by a different author or group of authors. There is a section on ME/CFS as a disorder of the autonomic nervous system in and of itself that is (shockingly!) cogent and well-researched. It's probably a good one to give a skeptical physician, in fact, though after reading it they would almost certainly refer you to an autonomic specialist rather than claiming to understand your condition themselves.

    -J
     
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  12. Snookum96

    Snookum96 Senior Member

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    Thank you!

    I think I'll order it and give it a try. I have a tilt table test coming up and I want to better understand dysautonomia.

    Thanks again!
     
    JaimeS likes this.
  13. bananabas

    bananabas Senior Member

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    You mean doing the tilt-table test?

    Right. What they don't say, however, is what these 3000 euro tests are.

    Are there any KDM pacients that have shared/are willing to share what tests he did?
     
  14. A.B.

    A.B. Senior Member

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    Lactose and fructose intolerance tests.
    A CPET.
    Food intolerances.
    Various special tests mostly related to immune function and gut health, such as PGE2, cytokine levels, secretory IgA, soluble Cd14, lactoferrin, C3A, elastase, nagalase, PrPc (and others).
    Urine neurotoxin test.
    Microbial stool analysis.
    And what I believe are western blot tests for various bacteria.

    I'm going from memory here so I'm sure I'm missing some stuff. He also tested me for midichloria mitochondrii (I'm not sure why he tests for this newly discovered pathogen about which we know so little).
     
    Last edited: Sep 15, 2015
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  15. Drass

    Drass

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  16. JaimeS

    JaimeS Senior Member

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    Um, I wrote a blog post about it. Just be aware that everywhere I was skeptical he'd find anything was where he found something. ;)

    -J
     
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  17. justy

    justy Donate Advocate Demonstrate

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  18. bananabas

    bananabas Senior Member

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    I wonder, how many of you have confirmed these blood test results by re-doing them in the same time period at an independent lab?
     
  19. JaimeS

    JaimeS Senior Member

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    Most people can't afford to get the lab tests done at multiple labs and compare; and if they did, and the values differed dramatically, from a logical standpoint it still doesn't give you anything. You can't tell from that data which test is correct or if they are all invalid. The best you can do is aim for repeatability with the same lab; and that is how KDM chose the lab he likes best. He sent the material from the same patients to different labs, cut out any outliers, and then sent the same blood again to see if the lab still said approximately the same value. Again, this is measuring precision, not accuracy, but it is the best that can be done without microscopy.

    For pathogen studies, you can remove the blood and examine it microscopically and hope to catch sight of one of the critters; that is the only way to verify a blood test's accuracy.

    Sorry if I am a little snippy on this. We just had a huge conversation about Lyme testing that I found very disheartening. Those were the conclusions I drew from the discussion.

    -J
     
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  20. Drass

    Drass

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    I have a similar question.

    Do we know if in the beta tests of these labs, they have been trying to use the same person to analyse his blood during several weeks to see if the results are consistent? I'm not too sure about it..

    I have tested myself in several clinics for lyme and i just got my positive in ArminLabs....
     

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