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My first appointment with KDM

Discussion in 'ME/CFS Doctors' started by RML, Apr 7, 2014.

  1. RML

    RML Senior Member

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    Well, it was actually 2 weeks ago today that I was in Belgium seeing KDM for the first time. I was fairly wrecked after it, so I'm really only coming round from it now. The 2 days seemed to pass by in a bit of blur, so now I'm trying to recap on it and remember what he had to say and work out what most of these tests are actually for!

    I have paid 2 invoices already, from Redlabs I think. They came by email. I'm still waiting for the American invoice, I think the nurse said it will come by post. How long does it usually take?

    One of the many questions he asked me was if I ever had a whiplash injury. I have, twice! The last one was about a year before I felt sick. I'm just curious what is the relevance of this? What impact might it have had, or how would it be involved? I never linked them before, so I'm clueless on this. All the other questions I understood the significance of.

    Also, before leaving I made a follow up appointment for 8 weeks later in May. Now I'm wanting to change this because I know results take a lot longer to come back than they stated to me. Would 3 months be enough or push it back to 4 months time?

    Before going there, I found so much helpful information here, but I still feel fairly clueless, so sorry if I bombard you all with lots of questions now!
     
    merylg and justy like this.
  2. justy

    justy Senior Member

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    Hi, I have my first apt with KDM in mid May. I have heard from patients that expecting a 4 month wait before a follow up would be realistic. I will probably go for a phone consult at that stage and a follow in person up after a couple of months of treatment.

    As for the whiplash, I have heard of a number of patients who have become ill or severely relapsed after whiplash type injuries. I met a young woman on a forum, a few years back who had had severe M.E, got better and then relapsed badly after whiplash in a car accident. She saw Perrin for Perrin technique for a while (not sure of timescales) and eventually I believe recovered again.

    Hope you get some more answers from those actually in the know.
    Cheers,
    Justy.
     
    RML likes this.
  3. Daffodil

    Daffodil Senior Member

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    hi RML. the test results themselves don't take that long to come back, but by the time he sees and analyzes them and writes the report, it is 3 - 4 months. you can ask for your results to be emailed before that, if you want....I always do that.
     
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  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @RML

    Just a guess about the significance of whiplash: we know that the brain stem is often involved in ME--perhaps whiplash could injure the brain stem?

    Sushi
     
  5. Vegas

    Vegas Senior Member

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    Funny you should say that. I just got an email message from a traumatic brain injury patient today who was suffering from what i recognized as cerebellar dysfunction. He is about a month out from the TBI and is experiencing classic signs of an injury to the cerebellum: Impairment in fine motor skills, ataxia, postural instability, tremor, and vestibular dysfunction. He was rear-ended at about 40 mph and suffered a severe whiplash injury. These cerebellar symptoms are not all that common with whiplash trauma, although this injury was severe.

    From working with TBI patients, I see many (and have lived many) of these similarities between traumatic brain injury (TBI) and ME/CFS. There are fundamental neuroendocrine shifts that take place with TBI, and are not largely understood.

    With Mild brain trauma, I anecdotally find that those that fare the worst have some psychological history of anxiety or depression, and they commonly have GIT dysfunction and signs of B vitamin disturbances. These injuries to the brain set off enormous releases of stress hormones, which can correlate with injury severity.

    I think with milder concussive injuries, prognosis seems to relate to ones capacity to suppress oxidative stress. This, I think, is why children often do better. Of course, if the insult is severe enough, and happens very early in life prior to brain development, they can fare more poorly.

    One of the common patterns I see is that these injuries precipitate a stress response, one that never really normalizes. I think the un-metabolized amines play a part in altering these patient's microbiomes, while concurrently affecting their moods.
     
    beaverfury, taniaaust1, justy and 5 others like this.
  6. RML

    RML Senior Member

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    Thanks for all the responses guys!

    @justy I will look into the Perrin technique. I did hear of someone on an Irish site using that too and finding it of use. Good luck with your appointment in May!

    @Daffodil I will do that and get results emailed prior to going. At least then I will be prepared and understand them and what's going on.

    During the brief chat with KDM, I did get snatches of useful info and pointers, especially in regards to my migraines and hearing loss, he also did a quick examination that hurt like hell, but my still half asleep brain couldn't come up with decent responses or further questions at the time. I just dumbly sat there looking at him!? So yeah, I'm hoping next time I'm more prepared and that I will actually have some input into it.

    @Sushi @Vegas The feedback on whiplash and brain injury is interesting and makes sense. I will look into it a bit more now I have a starting point.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Some patients record their appointments with him. And some take a trusted second pair of ears and brain to help with formulating questions in light of his comments.

    I don't have the "second brain option" so I try to think of all the possible ways the discussion could go and create written questions that I can use while in the appointment. He is patient while I take notes and cross out answered questions.

    Best,
    Sush
     
  8. RML

    RML Senior Member

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    Yeah, I did bring my Mum in with me, mainly as I have moderate severe hearing loss, (rapidly deteriorated in last year) and I'm at the point where I can hear/ understand very little, so my mum was my second ears rather than a second brain. It was strange as he would ask question and kinda then look to my Mum, and we were both answering once I worked out what he asked. It was a little confusing and suppose didn't help communication in general.

    I will record it next time for sure, and actually make use of the paper and pen I brought in with me.
     
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  9. RML

    RML Senior Member

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    It's 3 weeks on from my visit to Belgium and I am still waiting to receive one of the invoices. Earlier I wrote that is was from American lab, so i figured it might take a bit longer to arrive by post from there. But it is actually the invoice from the general lab in Belgium, Labo medische ontledingen (or something similar).

    Should I chase this up or wait a little longer. What is the usual waiting times for this?
     
  10. Valentijn

    Valentijn Activity Level: 3

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    I think some of the invoices took a few weeks to arrive. I wouldn't stress about it - they'll contact you if something went wrong or they're expecting payment but somehow didn't get the bill to you yet.
     
  11. maryb

    maryb iherb code TAK122

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    Are you sure its not an invoice that needs paying? some of them you have to pay the lab direst.
     
  12. RML

    RML Senior Member

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    Thanks I don't mind waiting if that is usual timing, on my list of tests the nurse had written that the invoice would be either by email or by post next to them, but no idea of timings. I didn't want to be too lax in case there was a problem and it might effect getting the tests done or push back the date on results.
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    That lab takes a long time to send the invoice, but don't worry! they will send it eventually. I think mine took well over a month.

    Sushi
     
  14. RML

    RML Senior Member

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    I got my Borrelia Elispot LTT results back from Infectolabs but not sure what it means...

    At the end it says : 'The results are an indication for an actual cellular activity against Borrelia'

    But I can't work out if that is a yes or no results?

    Borrelia Fully Antigen is +22
    Borrelia OSP Mix is +18
    Borrelia LFA1 is 1

    with references of <2 for all of them.
     
  15. Valentijn

    Valentijn Activity Level: 3

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    Actual cellular activity would mean that you have a current and active immune response to Borrelia. So basically you've got a nice case of Lyme. Welcome to the club :p

    "OSP" is the reaction to the Outer Surface Proteins of the Borrelia, which your body is recognizing as pathogens and attacking. LFA is Lymphocite Function-associated Antigen, so is another type of immune response to the Borrelia.
     
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  16. Clodomir

    Clodomir In hibernation mood

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    Hi,

    Normally, I see him every 2-3 month (I am living in Belgium…), but I booked my second appointment, 3,5 month later. First analysis takes always longer.
    I know that Redlab begin to test just after receiving the payment. It takes at least 1 month to have the results. What you can do, is asking the nurse, when it is the right moment to have an appointment. Nurse Names: Jan (man), or Noosa. Phone them and see. You must phone in the morning. They don't answer in the afternoon.
    What I also do is, just a few days before the appointment, asking them to send me the results by mail so I can prepare
    my appointment.

    You will find a lot of information on the red lab website: http://www.redlabs.com

    have a nice day

    Clodomir
     
    Valentijn likes this.
  17. RML

    RML Senior Member

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    Thanks @Valentijn , my head is in a bit of a spin right now.

    I woke this morning determined to actually get through some things on my to-do lists which have not shifted off that list for weeks, and I'm fed up thinking about doing them but not actually getting anything done at the same time. I was only getting started on this and ticked off a few bits when I got the email with results. My to-do list is completely stalled now haha!

    I was quite content to wait several weeks for results, even the 4 months, but now I'm getting really curious and impatient for the rest of them too.

    I'm trying to work out how and when I picked this Lyme up. KDM did say it started before the date I stated as the begining of my sickness.
     
    Valentijn likes this.
  18. Valentijn

    Valentijn Activity Level: 3

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    My exposure was about 20 years prior to diagnosis. Some symptoms that were likely inflammation-related began back then, but otherwise it was a slow decline until I hit the ME-wall a few years ago.
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi RML,

    That is an extremely positive Borrelia test! I think anything over 2 or 3 is positive and you are at 22 and 18. While Borrelia is not a "fun" diagnosis (what is!) once you get it under control, you should feel better. Now you have an indication as to how to proceed.

    Your test and the rest of your reports will be coming.... Mine came last week and took longer than usual.

    Best wishes,
    Sushi
     
  20. RML

    RML Senior Member

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    Do you only get it from a tick bite or can you pick it up from someone else? I was working in a hospital when I get sick 2 and half yrs ago, and in contact with very sick nd highly infectious patients, I always wondered if I picked up something from one of them.But it goes way back further than that. what about mosquito's ? I did get a few of them on holidays in Italy the year before I got sick.

    Yes Sushi, I noticed the high numbers and wondered about them. Been googling these test results today and most seem to be 4 or 5, maybe even 7. So wondering if 18 and 22 mean I've got it worse, longer etc
     

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