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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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    Just back from my trip now. Appt went good, didn't take long at all. Was as airport by 12, flight not til 21.15 though, so heaps of time to kill. Decided to enjoy the beautiful 25 degrees sunshine outside for a bit, got burnt to a flipping crisp - arms and shoulders and a big shiny red Rudolph nose too!

    Did way too much walking today, not even to mention the pathetic bike pedalling attempt, in a lot of pain right now in legs. Which is concerning as thankfully pain is not usually an issue for me. Oh well, hope it improves after a good sleep.

    I'll report back properly tomorrow. Can't deal with it right now
     
    Hanna, Little Bluestem, justy and 3 others like this.
  2. justy

    justy Senior Member

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    Glad i'm not the only one who had a 'pathetic bike pedalling attempt'. Hope you recover from the trip quickly and look forward to hearing all about it when you are ready.

    TC
    Justy.
     
  3. RML

    RML Senior Member

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    Overall, this second trip was easier in general. Last time, arrived v late on Sunday night, and stayed til the Wednesday, so it was a bit long and fed up of the hotel by then. This time stayed only the 1 night, and arrived about 5 ish on Monday so gave a good chance to get organised and settled and have an early night.

    After a misunderstanding and confusion about where to meet the shuttle bus for pick up at airport, finally arrived, had a short rest and then went for some grub. Food was a bit stodgy and didn't feel good afterwards. So even though I was a bit tired, went for a walk down the road strolling along different streets and houses nearby. It was a gorgeous day, about 25 degrees, which was a nice surprise. I love the sun and always feel better during summer, but at home all of May has been lashing rain and still feeling wintery, and needing heat on in house. I was way over dressed with a vest, sweater, zip up hoody, jacket and scarf when I just arrived lol. For rest of evening just rested up, looked over test results again, and organised my questions for KDM. I had way too many and wanted to make I gave important priority.

    I got a good rest and getting up early wasn't too bad, since I am not used to waking and getting up early. So considering this, I was doing quite good. Especially compared to last time where I felt like I was resurrected from the dead. I was generally much more alert and 'with it' which helps.

    Anyway, shortly after arriving at clinic for 9.30, was the exercise stress test. To put it nicely, this was all kinds of hell!!!
    And not just the exercise part either. The most 'stress' came from my inability to hear and understand what was being said. (Because I don't get out I don't think I even realise how bad my hearing problem really is.) I keep doing wrong and needing to ask to repeat again and still not knowing, especially when she was getting machine ready etc and with her back to me. Instead of taking off my top, I just rolled up sleeve! Then she said it again, I only removed my sweater but not my vest top, so had to be asked again. Rest of it followed much the same! So embarrassing!

    Anyway, the pathetic pedalling part didn't go so great either. It's really hard to know when to actually stop, I keep trying to keep going and going, because it barely had started so I couldn't just stop? It got to point where I could barely go anymore, the nurse asked me do I want to stop because I was making all sorts of faces and grimaces trying to push on with it. So I agreed to stop, she then asked me why. I said it was because my legs in lot of pain and could barely move them anymore. And the fact that my breathing was bad. Which was obvious I'm sure, as I could barely answer through gasping for breath! I knew Justy saying she did about 5 minutes, but I didn't even think it was even that long so I asked. She told me the doctor would give me the information. So I don't know how long I lasted, I was worried it wouldn't be long enough to give a proper result.

    Also, last time I was at the clinic, loads of people coming out of that same room had print outs so was assuming it was from exercise stress test and asked her about it, again told wait to see the doc. Perhaps those patients had something else done. Also, thought I would have had the echocardiogram done this time, but no that is for August. Took quite a while for my breathing to settle back to normal. And also one of my most hated symptoms - pins&needles/tingling in my feet- were going crazy! This is not an issue now mostly, only when I over do things and push too much, I get my feet problem slightly so use this as to gauge that I need to slow down or not do so much. During the meeting with KDM, he didn't mention much about the test at all, so I brought it up. He said it was stage 4 disability and in no way could I work.


    (I will finish rest of it in a bit, about the meeting with him, I need a bit of a break)
     
    Last edited: May 26, 2014
  4. justy

    justy Senior Member

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    Thanks for the update - yes the exercise test was hard - although I really felt I hadn't tried that hard, but was exhausted anyway!
     
  5. RML

    RML Senior Member

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    So when it was finally time to have a chat with KDM, I was brimming with questions and eager for information. I was a bit cheeky perhaps because i dragged a chair to the side of the table and up a bit so I was closer to him to hear better! It is definitely the Lyme I have, as I worked out from test results. More than that, he was particularly worried about the very raised cytokines tests, especially the IL-8 being 20,000. I asked if this was normal for his patients to be raised, he said yes, but not that high as in my case. He said my body is fighting like hell and mentioned me being in the top 10% (for fighting it I think). He mentioned about a cytokine cascade or storm but didn't catch what he meant by this. And that eventually they will wear out completely and immune system no longer be able to fight. He was adamant that sooner its treat the better, can't leave it much longer.

    For treatment, he went with I.V's but made no mentioned to orals and I didn't bring it up. I questioned being able to get this done at home, he mentioned someone in Blackrock Clinic used to do them, but now retired. I guess he means Dr. Austin Darragh. I have booked in for his clinic for August. But will look into doing here at home and see if I can get anyone willing or available to do it. Would be nice to be near home especially if I herx badly, and I have no idea how to go about organizing accommodation in Brussels.

    He also said my B cells were in bad shape too. Is this the IgG test? He mentioned at some point about Lymphoma risk, and I can't remember if it was to do with Lyme in general or wrecked B cells. At this point, my Mum mentioned that my dad died of a Lymphoma and a v agressive one too. He said he would put me on Immunoglobulin.

    He also said put me on gluthionne (?) but I can't remember for what or why.

    He wasn't too bothered by the mold result, just that it can make Lyme slightly worse.

    He had some interesting information about the LTT test. I asked him why it was 18,22 etc when most seem to be 4 or 5 or 7, I don't think I quite got the answer I was looking for (I wanted to know if it meant I had the Lyme longer, worse, fighting it more etc). He stated into a big discussion about the results, most of which I didn't catch. Basically it means he could tell from the results that it wasn't the American Lyme I had (the b.b one - can't remember what the name is) but European Lyme. And he has been trying to get them to change their protocol for testing it. Then he went on about different types - Polish, Russian and something else Lyme being harder to treat maybe. He didn't know which one I had but it is European type anyway.

    He couldn't tell how long I have Lyme, could be from birth or when I first got sick 2 1/2 yrs ago.

    I asked him about chances of recovery etc. He said something like 75% better after 18 months and 85% by 3 years. I could return to work etc but never have a body able to run a marathon. I would continue to get worse and worse - 6% loss of functioning per year. I think! I was only picking up half of what he was saying and my Mum filled in the gaps afterwards!

    When I was leaving I talked briefly to one of the I.V girls, she said KDM was great , he gave her her life back. Before she spent most of time in bed, and couldn't walk, now she is feeling great again and back at work. I didn't get to ask her how long she been on treatment or follow it up. Shuttle bus came but she is going to help get me info for someone who is in accommodation nearby.

    Overall, it was short meeting but good, the worst bit I think was waiting 9 hours at airport. There is probably more stuff but I can't think right now. I've got splitting headache and ringing in my ear. And my memory is terrible.
     
    Last edited: May 26, 2014
    taniaaust1, SOC, Hanna and 8 others like this.
  6. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Thank you for giving that info. I would love to see the Dr. Can i get loans to see him or does it have to come out of your own pocket? Im positive I have chronic mycoplasma (if not reccuring) and haven't been tested for Lyme. I also have chronic candida but no doctors seems to care about my chronic infections.

    Also is it easy for you to get the treatments in Ireland? Do you you get the treatments on the NHS once you test positive?
     
  7. RML

    RML Senior Member

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    @Ambrosia_angel To be honest, I have no idea how to go about organizing it here in Ireland, or if it would be easy. In fact, at the moment I do not even have a GP. My experience from them so far would say no! I will rest up a few more days maybe next week look into it. He did mention a doctor that used to do in Ireland but is now retired, so I could check with the same clinic in case someone else took over doing it. There are 2 two places that look at fatigue /M.E so I will also check if they do I.V's. Also, my aunt is a nurse and will check around at her hospital and colleagues. I am not hopeful though. If you illness goes against the grain off the run of the mill stuff, it is difficult to get them to do it. We don't use NHS here, but I reckon it would be similar. I did live in England for 4 yrs and was working in NHS as part of my degree course so I am familiar with how it works.

    I also worried if they would even except the LTT test because it is not used here. KDM went into a big speil about how it was recognised and accepted and it shouldn't be a problem. But still I think it would be questioned
     
    justy, Sushi, Valentijn and 2 others like this.
  8. RML

    RML Senior Member

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    He also seemed fairly certain that my hearing could come back. Now I'm not too sure on this, because I always thought once it was damaged, it can't be fixed. But I wish I knew this for sure, or had treatment before now. Tomorrow, I am going to pick up my hearing aids, and it's gonna cost a hell of a lot of money. Especially if only a temporary need for them. The 5 grand going on them, could well be used on IV treatment instead.

    I put off ordering them for months and now I have more answers than I had then, and I think I would have made a different choice.
    Obviously, there are different levels of hearing aids, the audiologist was pushing the top of the range, costs more of course, but she said for a young person, who is out in working world, and socially, needs the best as they have most needs and experience variety of environments and sound barriers associated. Of course, for me that is not the case, and I tried to tell her this. And wanted to go with a lower range and price. The most basic was she said for old people mainly only watching tv and inside the house etc. Now this one matches a description of me perfectly. But still I would have gone a range or two up anyway. Now I feel I made a bad decision and should have gone for basic one to tide me over until treatment or improvements start. It is terrible to feel need to prioritise where the money goes onto which treatment area.
     
    taniaaust1, justy and merylg like this.
  9. acer2000

    acer2000 Senior Member

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    $5,000 for hearing aides? Thats absolutely nutty pricing. Surely you can get decent ones for less?
     
  10. Daffodil

    Daffodil Senior Member

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    hi RML. I am wondering...you mentioned that KDM said you would continue to worsen 6% a year...did he mean if you did not get treatment?

    thanks
     
    taniaaust1 likes this.
  11. maryb

    maryb iherb code TAK122

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    Just wondering if anyone has an appointment within the next 2 weeks?
     
  12. Valentijn

    Valentijn Activity Level: 3

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    I almost certainly will, for my first IV antibiotics infusion. Not sure on the date, but hoping for Monday or Tuesday. We'll call to make the appointment Friday, when we're more certain of the infusions being able to continue immediately after returning to the Netherlands.
     
  13. SDSue

    SDSue Florida

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    @Valentijn I'm excited for you to get started on the treatment and will watch hopefully for good reports!
     
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  14. maryb

    maryb iherb code TAK122

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    Sorry I meant with KdM?
     
  15. Valentijn

    Valentijn Activity Level: 3

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    Ahh, I'm just going to his clinic, but won't be seeing him.
     
  16. SDSue

    SDSue Florida

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    Does he have another doc working with him?
     
  17. justy

    justy Senior Member

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    No he doesn't - he seemed to be working very hard the days I was in the clinic - with nursing staff for doing all the tests and IV's etc that were also going on,

    I think a couple of weeks before I went he had two students training with him, but I think someone else may know morea bout this than me - I was just pleased o see he might be training up some more doctors - it seems to me that most of the specialists that help people with M.E so much are older and we NEED good doctors to be coming up through the ranks.
     
    Valentijn likes this.
  18. Valentijn

    Valentijn Activity Level: 3

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    Yeah, from what I've seen the nurses handle all of the IV stuff.
    A woman (doctor? student?) from Adelaide, Australia was there while we had our appointment. She was asking a lot of questions and followed us around a bit since we were speaking a language she could understand :p
     
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  19. SDSue

    SDSue Florida

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    At INIM, I saw the new doctor (Vera). I felt quite confident in her skills, as managing this disease is definitely something that can be grasped by a willing doctor. Unfortunately, I believe it requires extended training, almost a residency-type situation. In Vera's case, I think she worked by Klimas's side for 2 years.

    Once again, it comes down to reliable, repeatable testing in the mainstream. Imagine the day, when one of "us" first shows up at our GP's office, is taken seriously, and undergoes the appropriate testing, thereby saving untold thousands and years of suffering ...... since I'm dreaming, maybe I should throw in a unicorn - might be more likely:woot:
     
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  20. Art Vandelay

    Art Vandelay

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    Hi @Valentijn I just thought I'd ask whether they introduced the woman from Adelaide to you and whether you might remember her name? We desperately need some doctors here who follow KDM's methodical approach.

    Please don't worry if you can't remember, my brain fog severely reduces my ability to remember names!
     

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