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First Consultation With KDM

Discussion in 'ME/CFS Doctors' started by Allyb510, Jan 20, 2017.

  1. Allyb510

    Allyb510 Senior Member

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    This is an account of my first appointment to see KDM in Belgium.

    Hopefully this post may provide information for others considering a visit. I’m very pleased with the way the trip went, as you will see. Feel free to skip to the sections you’re interested in.


    Pre Appointment

    We left for the long haul trip to Brussels, deciding not to attempt a marathon driving session but break it up over a few days. Flying was not an option due to the logistical nightmare that any travel with me involves. Allergy is one of my prominent health issues. If I eat the wrong thing I can end up with a visit to casualty. It has happened numerous times.) To avoid this, I have to bring my ‘safe’ (and by safe I also mean ‘rare’) foods with me as I cannot be sure of their availability where I’m going. (Once I was trapped in Stansted Airport in a snowstorm for more than 24 hours with no safe food, having severe hypoglycaemia and then fainting on a packed train to London.) So, it is essential for me to have my safe/rare foods.

    As we finally approached the outskirts of Brussels, the motorway was surprisingly busy. For many years I've suffered a lot of pain and subsequently I also suffer anxiety. I was bothered by both of these during this journey. Continental drivers are fast and prone to weaving in and out of traffic at will. Scary, when the roads are slick with black ice!

    It was snowy when we arrived at our destination, a cottage we’d found on Airbnb. This worked out very well for my stay so I’d highly recommend Airbnb as a means of finding accommodation in Brussels. Most of the city centre apartments are unsuitable for people with M.E. My requirements in accommodation were…free parking, few or no stairs, cooking facilities, pleasant surroundings, easy supermarket access and less than half an hour travel to Himmunitas. With this studio apartment, I managed to satisfy all my requirements and more, at a very reasonable price.

    We took the following day very easy. I was dizzy and weak because my normal restricted diet was even more restricted in preparation for the Fructose test. I was also anxious about the next day’s appointment but, at the same time, I was looking forward to taking some action at long last. Nearly fifteen years had passed since I was initially diagnosed with M.E. (and I had many years of ill health before that). Fifteen further years with no support or treatment. I'm determined this year will be different.


    Day 1 of Clinic Visit

    It was a 25 minute drive on pretty busy roads from our cottage to Himmunitas. This compounded my anxiety. The clinic was quiet when we arrived. The Lactose Breath test was started straight away. A nurse came to take the baseline reading and I was given a solution to drink. Then further readings were taken every 15 or 20 minutes to record the amount of hydrogen in my breath. My brain fog was very bad which made completing a questionnaire about my symptoms very tough. I find it hard to assign values to my symptoms! What number should I pick? I feel I made a hash of that questionnaire but luckily I’d prepared a typed medical history along with diagnoses, medications I’m taking and foods I’m currently eating. So that may have mitigated things a bit.

    At approximately 9:30 I was called in to see KDM and my husband went with me. This was just as well, as my memory is atrocious. My husband, who’s got a superb memory, was able to remind me afterward of things we’d discussed. KDM was kind and soft-spoken. He told me he would read my medical history later and then launched into a number of questions. When did my problems start? What meds am I taking? Do I tolerate alcohol? Do I have allergies? Do I have jaw pain? Do my gums bleed and do I have mouth ulcers? Do I have digestive problems? Do I suffer from urinary or vaginal infections?

    There were many more questions. I answered yes to nearly everything. I was surprised to learn that my hormonal problems and history of miscarriage were most likely related to M.E.

    I was asked to 'hop' on to the examination table. KDM noticed a rash on my upper abdomen and said it was evidence of mast cells. Pressing my abdomen below the umbilicus on the right caused instant pain and nausea. I felt I could be sick. He told me there was inflammation in my lower gut which has caused my stomach to stop contracting, giving rise to reflux.

    He asked if I’d ever been bitten by a tick. I had, as it happens. At least once, as a teenager on our farm in Connecticut, I remember having a bloated tick in my hair and my mother touching it with a lit cigarette to make it drop off. Of course, now we know that is exactly the wrong thing to do but then we didn’t think about it one way or the other. I developed asthma about that time so there is possibly a connection between these events.

    I will attempt to sum up KDM’s initial thoughts, pending test results. This is my understanding of what he said…

    The cause of my ill-health was most likely a gram-negative bacterial infection that inappropriately activated my immune system. There was an inflammatory response in the gut that never went away. Chances are the original infection is now gone but the immune system has remained inappropriately activated. He said this initial infection could have taken place many years ago and this is why my health declined over decades. Every life event, physical or mental, has caused a worsening.

    He doesn’t feel that my exposure to chemicals caused the problem. He feels that my high viral counts are consequences. As is my small bowel bacterial overgrowth is also a consequence.

    As far as brain symptoms are concerned, KDM says that lipopolysaccharides are causing neuroinflammation. The brain is particularly affected by this toxin, which can destroy grey matter. He feels that permanent damage will have been done but that treatment can bring a level of improvement.

    KDM is all about the testing. He told me we will do the tests, get the results and make a plan. We will see if there is still an active infection, how well the immune system is regulated, how much inflammation there is and what is happening in the gut.

    He told me he has seen thousands of patients presenting with similar symptoms and with similar medical histories. He told me my situation can improve. I felt very heartened by his confidence.

    At the end of the appointment, I explained my worries about coping with having a lot of blood taken. (I have a history of fainting while having blood drawn.) KDM said he would organise for me to have a litre of IV saline.


    Day 2 of Clinic Visit

    Again, I arrived for 8:00 a.m., having fasted for more than 12 hours. This time the clinic was much busier with people of different nationalities waiting to be seen, having testing or having infusions. It struck me that Himmunitas is a magnet for people from all over the world. There really are so few centres of expertise in this field. My Fructose Breath test began immediately. The solution caused an instant blinding headache and I remarked to the nurse that I felt drunk. He was trying to explain the blood tests that the doctor wanted me to have but I couldn’t take it all in. (Later, the nurse told me that I was very fructose intolerant. Strange, because I haven’t eaten fruit for years.)

    The time for the dreaded blood draw came round. The nurse was sympathetic and reassuring as he knew how anxious I was. Blood was taken while lying on the examination table. 20 - 25 vials were removed and I was extremely dizzy toward the end. Straight away I was hooked up to the IV saline that was waiting. The nurse lifted my legs to allow blood to flow to my head. As the drip replenished the lost volume, I gradually began to feel better. I very much appreciated this nurse’s help.

    These are the investigations I had

    Armin Labs (Borrelia EliSpot)

    Himmunitas (Lactose and Fructose breath tests and urine neurotoxin)

    Labo Medische Ontledingen (various haematology, haemostasis, autoimmunity, biochemistry, hormone, immunophenotyping and 25-OH-vitamin D)

    R.E.D. Labs (tests for immune dysfunction, gut function and infection (bacterial, viral and fungal))

    US Biotek (Food Allergy Panel)


    Post Appointment

    We arrived home the day after leaving Brussels. A marathon session. My husband did all the driving but I still felt like a zombie. Never again would I do it that way!


    Conclusion

    Its early days but I feel happy that I’ve taken this step. I’ll have spent approximately 3,000 Euros in total but I believe this is value for money for all the information I'll receive. Many labs would charge considerably more than I've been quoted. I only paid 90 Euros (£79) for his consultation, a small sum for someone of KDM's standing and experience. In February I will be paying £300 to see a consultant allergist in the UK!

    In conclusion, this is a positive start to the new year. I’m reassured that KDM will be able to work out what my issues are and come up with a treatment plan. Should this round of testing not yield any clues, I don’t think he’ll give up. But I’m realistic about what can be achieved. I know long term damage will have been done. I've been ill for many years. If I’m able to regain any of my former health, I will be satisfied.

    Now, the test results…
     
    Last edited: Jan 23, 2017
  2. Daffodil

    Daffodil Senior Member

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    @Allyb510 thank you for that wonderful, informative post.

    I have been in treatment with KDM for 4 1/2 years now, starting after 19 years of illness and lots of incorrect and toxic treatments.

    I hope you keep updating us!
    xo
     
  3. Allyb510

    Allyb510 Senior Member

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    Aw thanks Daffodil! I would love to know your story and if you've been helped under KDM's guidance. I hope the toxic treatments haven't left any lasting legacy. We are quite a delicate bunch really and can be easily damaged by meds that 'normal' patients can tolerate.

    xx
     
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  4. Starlight

    Starlight Senior Member

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    @Allyb510 thanks so much for this very informative and helpful post. I would love to be able to go to KDM so very interesting to have an idea of a consult and what sort of testing he does.
    I notice you mentioned he said that your immune system was overactive. Then later in the post you said he told you that it was suuppressed and unable to fight viruses. Did he explain how it could be overactive and undertake?
    Again,thanks so much!

    @Daffodil I have been following you for so long. I was wondering how you are and what kind of improvement you feel you've had over the past years with KDM? I really appreciate all you share. I'm on antibiotics for over a year with another Dr and have had some improvement in things like pain and stomach issues but I have no increase in energy and can not be any more active. Hard to what the right course of action is sometimes.
     
  5. justy

    justy Donate Advocate Demonstrate

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    Thanks for this very through post - you sound very similar to me. we also travel by car, from west Wales, takes 12 hours door to door and we nearly always do it in one go now with me laying down, and arriving 'zombified'.
     
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  6. Allyb510

    Allyb510 Senior Member

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    Thanks @Starlight! I think KDM means my immune system overreacts to harmless substances, resulting in my vast array of allergies, and yet isn't strong enough to keep certain infectious microorganisms at bay. We all have so many chronic sinus and other infections with M.E. that we can't overcome, don't we? x
     
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  7. Allyb510

    Allyb510 Senior Member

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    Hey Justy, it takes days to get over that zombified feeling doesn't it? Even my vision and hearing shut down somewhat (tunnel vision and a whooshing in the ears). Too much stimulation for the nervous system I think!

    When are you off to Belgium? x
     
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  8. Starlight

    Starlight Senior Member

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    @Allyb510 That is very interesting, I also have many allergies that I didn't have before I got sick 11 years ago. I never understood and that was a very clear explanation so thank you very much.it makes total sense.
     
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  9. Daffodil

    Daffodil Senior Member

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    @Allyb510 i am very happy i am seeing KDM and am very fortunate that there is some money left for me to do so. he has helped me more than anyone else.

    i won't bore everyone with my story which they have heard many times lol. i have a treatment thread on this board but please IM me if you want to talk!

    just remember to hang in there when it gets difficult....KDM Knows what he is doing
     
  10. Dechi

    Dechi Senior Member

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    Thanks for sharing your story ! I wish I could see him, but it's a bit complicated from Canada...
     
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  11. JES

    JES Senior Member

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    I wonder if KDM offers any treatments that cannot be bought online? The only one I am aware of is Rifaximin, which is difficult to get in my country for anyone, even with a prescription. That is one of my main concern with traveling to Belgium. I have no doubts that he is a good doctor, but treatments for CFS/ME are still at infancy.
     
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  12. Murph

    Murph :)

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    Great post. I hope the treatments you get are effective! And if not, you've gained some information at least, on what doesn't help. It feels good just to be proactive sometimes.

    (Did you get a score on that fructose breath test? I did that and I remember the lab tech was quite amazed to see a number over 100.)
     
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  13. justy

    justy Donate Advocate Demonstrate

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    Im going in a week, will be there for 8 weeks - its a long time away from home!
    I have a diagnosis of MCAS on top of everything else - is that what you have? have you seen Dr Afrin's book 'Never Bet Against Occam'? its a great book, and easy to read.
     
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  14. Daffodil

    Daffodil Senior Member

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    I'm in Canada....
     
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  15. Daffodil

    Daffodil Senior Member

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    how would you know what to buy? what he gives you and for how long, is based on a lot of testing and interpretation of the tests
     
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  16. adelheid55

    adelheid55 Senior Member

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    @Ally hi, everything you have written is exactly the same as KDM told us about our daughter. She is now being treated for one year but so far there hasn't been any improving because of her being ill for a very long time. We hope this year will be better. And I hope the same for you.
     
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  17. Allyb510

    Allyb510 Senior Member

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    No worries @Starlight :). I remember Dr. Munro of Breakspear Medical also telling me this years ago. She is very heavy into dealing with the allergy component of the problem to take stress off the immune system. I'm not sure what KDM's focus will be but, in any case, the allergy part of the problem really affects everything else. Without my extensive allergies, I would have been able to tolerate supplements and drugs that could have helped me. I'm sure you are the same.
     
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  18. Allyb510

    Allyb510 Senior Member

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    That's very reassuring Daffodil! I'm so pleased. I don't believe for a minute it's an easy fix though. KDM told me he treated his daughter for 8 years before she was better and I don't think she's completely well even now. I suppose he's learned a lot over all these years and hopefully we won't have to go 8 years before improvement!

    I will look for your story and IM for a chat.

    I won't give up on KDM if he doesn't give up on me. So many doctors have given up on me after only a few negative test results!
     
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  19. Allyb510

    Allyb510 Senior Member

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    Are you? That's quite a trip for you then, to Belgium! Must be exhausting to even think of it. Well done that you've managed to find the reserves of strength.
     
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  20. Allyb510

    Allyb510 Senior Member

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    I hope you can manage to make it over. I don't think you'd be disappointed! x
     
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