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In Belgium to see KDM

Discussion in 'ME/CFS Doctors' started by szenn, Jul 15, 2013.

  1. szenn

    szenn

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    Hi
    I thought I would give an update on my quest to find out what is wrong with me.

    Anyway, in short I thought I might have CFS and everyone (9 doctors, including William Weir, a rheumatologist and neurologist said I didn't).
    I began to doubt my own sanity. I had booked to see KDM two months ago and actually wrote to him saying
    'Everyone thinks I have anxiety, what do you think? Should I cancel?' I gave a list of my symtoms.
    I begged his secretary to forward my email and she did and within the hour the prof. had written back to say
    'no, I think you should come'.
    I was more than surprised. I have no real fatigue, no swollen lymph nodes, no PEM and no cognitive difficulties. Just weird bladder burning, sleep problems (can't maintain sleep) and burning in feet and hands, oh and I am bright red like a tomato most days.
    Anyway here I am, right now in Belgium. Saw KDM today, he was very friendly, very chatty and said he thought I had Bartonella and probably Lyme disease. (I do have a cat! but London is not exactly Lyme country....although I have removed ticks from my cat and been scratched by him....I don't remember a bull's eye rash though)
    Tomorrow I am to have many blood tests.

    But he says I have probably had it years and it was triggered by an infection.
    He says there is no such thing as CFS/ME. That all CFS/ME problems manifest as immune/gut problems but are caused by: Lyme, operations, vaccinations, Bartonella and such - all l kinds of different stuff. Sorry if I am teaching my grandmother to suck eggs here. I am new to this remember!

    Worried that if I have had it this long will my daughter who is 4 have it?

    I really liked him, I am just confused as I wrote to a lyme specialist in London months ago and he said my symptoms were not consistent with lyme, even though they did seem to be when I checked them against a Lyme symptom list.

    Overall I am really glad someone does not think I am just have GAD though, If there is a moral to this story, it is trust what your body is telling you and keep pushing. I know people out there have been back and forth for years. I have only been symptomatic 6 months and I do feel better that something 'might' happen now and I may get better.

    If anyone is interested, the previous discussions are here...I am not saying anyone would be..I do rant on but hey ho, it's here if you're bored.
    http://forums.phoenixrising.me/inde...-forum-and-worried-i-might-have-cfs-me.23820/

    http://forums.phoenixrising.me/index.php?threads/update-on-my-cfs-diagnosis.23947/
    Beyond, Little Bluestem, Ema and 5 others like this.
  2. Valentijn

    Valentijn Activity Level: 3

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    szenn - even if you don't have PEM and typical ME/CFS, you obviously have something going on. So I think the sort of testing that KDM runs is a great idea.

    Really, most patients without an easily diagnosed illness would probably benefit from seeing an ME specialist :p They're used to finding and treating so many chronic problems.
  3. AbbyDear

    AbbyDear

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    I have seen a few videos by dr. Shoemaker, dr. Cheney, and dr. KDM, and some things they say make sense to me/agree with my experience, confirm things I have thought or literally felt, etc, that no other doctor can seem to realize, or connect the dots. Most docs have no idea of Othostatic Intolerance/POTS or even dysautonomia in general or how to test for it. I once fell back down to my seat after standing to greet a doc, and he thought I was joking around, taking no note of the condition, nothing, no check of blood pressure, etc. Most are not aware of cytokines and their effect on brain. Many docs do not even recognize CFS/ME - one told me flat out he did not believe it even exists, in any form period, like people were just "tired", or faking.

    Anyhow, I wish I could see one of them. At the same time, Lyme is serious condition with serious treatment. I am not sure how many docs/second opinions are necessary to be confident, I suppose this may be a personal criteria, but certainly, the testing, though not 100%, should help to confirm... and/or rule out other things. Others here might be able to comment on the testing. This (lyme) treatment can be very difficult. After doing some research, and maybe talking with some that have/have not improved with treatment, weigh the risks vs benefits. Maybe there is a trial preiod where you might know after a short period of time if it working ?
    szenn and snowathlete like this.
  4. snowathlete

    snowathlete

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    Hi Szenn,

    Glad to hear you're seeing someone who can offer you some help. I'm a patient of KDM too and he knows his stuff, and a lot more besides ME/CFS. The burning feet is very common as a Bartonella symptom.

    His wide range of testing is one of the main things I wanted when I looked for an ME/CFS doc. I tested positive for Bart, and he thinks I probably have Lyme too. I see him next month when I'll have the Infectolabs LTT test for Borrelia.

    Regarding your worries, most often he doesn't prescribe treatment until he has test results (at least, that was the case for me), so then you will be more certain as you will have those results to go on. But, sometimes the tests can give false negatives and in such cases I guess he may still treat. Personally, I'd go with it as he has a lot of experience and knowledge.

    I worry alot about the posibility of my daughter having it too. I asked KDM about this and he said maybe. He also said that my wife almost certainly had it. I said that if they go symptoms I would bring them to see him and he agreed that the earliest he sees people with symptoms the easiest and quickest it is to fix it. So far my daughter, 2.5 years, is really healthy.
    szenn likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi szenn,

    KDM will pay a lot of attention to your lab tests before treating you. He has enormous experience with this spectrum of illness and can often guess your diagnosis from your history and symptoms, but he will test for Borrellia and Bartonella in several ways to try to get a firm diagnosis.

    I am awaiting the results of genetic sequencing for Bartonella as fragments were found in my blood and he wants to confirm it.

    Best wishes with this! I think you are in good hands. He has helped me a great deal.

    Sushi
    szenn likes this.
  6. szenn

    szenn

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    Hi Snowathlete
    I know you are a patient! I sent you a message remember!
    My daughter seems pretty healthy too but does get infections easily and get upset tummy and loose stools frequently. But KDM asked if she had problems learning language or had ADHD tendencies and if she was bright. And She was a very early speaker, and is certainly not autistic or ADHD. Very bright. I could take her tomorrow and get her tested but he said wait and see my results.
    Thanks for your help btw,
    Valentijn and snowathlete like this.
  7. szenn

    szenn

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    Hi Snowathlete
    I know you are a patient! I sent you a message remember!
    My daughter seems pretty healthy too but does get infections easily and get upset tummy and loose stools frequently. But KDM asked if she had problems learning language or had ADHD or autistic tendencies and if she was bright. And if she was a very early speaker. She is certainly not autistic or ADHD. Very bright. Learnt language early.
    I could take her tomorrow and get her tested but he said wait and see my results.
    Thanks for your help btw,
  8. szenn

    szenn

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    Melatonin does help my sleep. But I only tried it twice. I now have a prescription for ...Rivortril ..I think that's the name. Anyone had this..epileptic drug...benzo?
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A lot of us here use it. It is called clonazepam or klonopin in other countries. About 20% of people seem to have problems with getting tolerant to it and having to raise the dose. I don't. It is a very helpful drug for me in a lot of ways. I usually only take a small dose at night but occasionally take a dose during the day if I have gotten PEM.

    Sushi
  10. maryb

    maryb iherb code TAK122

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    WHAT......
    Nielk likes this.
  11. snowathlete

    snowathlete

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    Indeed, I remembered after I posted. Sorry about that - very foggy brain.

    That is very interesting about language development. My daughter's speech is quite behind. She understands words well, and knows what things are but she can't say them very well. I think it's probably normal because me and my brothers were very late talkers too. But I'll keep this in mind.
  12. taniaaust1

    taniaaust1 Senior Member

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    Rivotril .. as another said, in other countries its called Klonopin or Clonazapam. Thou he is known to be a good doctor, he is being a bit misleading by making you think this drug cant be harmful. (maybe he's being misleading if he thinks you've also got anxiety as well? and hence maybe he doesnt want to worry you).

    It isnt addictive as such as by going by the definition of drug addiction being something which will cause one to crave the drug and due to those cravings want more and more.. BUT people can and do get stuck on this drug for some cant just come off of it, due to trying to do so can give some TERRIBLE effects due to their body becoming "adapted" to this drug and hence then finding one needs to take more and more for it to work.

    So yeah it dont cause drug "addiction" but it can cause terrible drug affects causing some to not be able to get off of it and can cause people to need to keep increasing their dosages as the body adjusts to it (builts up tollerance and body can start to rely on the drug. there is NO safe benzo). Some have even had to go to drug addiction clinics to get off of it safely.

    The above being said.. it is a common used drug in ME/CFS and for many of us has been very helpful. Many do manage to be on this drug safely and without any issues even when coming off of it. I myself had no issues when I stopped it and in my case it was very helpful. I took it for the constant neuro overstimulation and anxiety one can get with ME/CFS from overactive nervous system.

    Best luck. Do not think this drug is safe thou for all, it is a serious drug to be on (all the benzo drugs are as they can cause drug adaption and tollerance) and taking it needs to be weighed up fully with your need and used with caution.

    I would trust that you do not have ME/CFS based on your symptoms and what all those doctors have also said about you not having it too. (I personally think ME is a real illness but CFS may not be).
    Nielk and Tito like this.
  13. ukxmrv

    ukxmrv Senior Member

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    Good luck with KDM. I think that it is worthwhile being tested and trying his treatments. He'll be seeing a whole range of patients with different hard to diagnose complaints. That's the advantage to some of the CFS and ME doctors, they get used to seeing the "difficult" patients. Also he should know how these infections impact on different ways.

    I've taken Ritrovil (clonazepam) off and on at different times. No problems with coming off and on it although another patient I know ended up in a drug addiction clinic in the UK.

    The Lyme expert that you wrote to in the UK may be one of those who doesn't agree that Lyme is a chronic hard to treat disease. I had the NHS Lyme test and the infectious disease consultant that I saw thought that was the end of the matter.

    Would you mind elaborating on the symptoms seen in children? My niece has just been diagnosed ADHD but with a high IQ. She's very good at language, maths etc.
  14. szenn

    szenn

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    Hi

    Hi thanks for all your responses.
    KDM didn't elaborate too much on symptoms in kids. He just asked me if my daughter was very anxious, had ADHD symptoms or autistic symptoms, e.g., was not sociable and if she had problems with language.
    ukxmrv likes this.
  15. szenn

    szenn

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    Met a chap at kdm's clinic who had Bartonella for one year. Uk did nothing about his symptoms so he went and got diagnosed by the prof . One year of treatment and he is well again.
    He was having a final appointment.
    Encouraging
    Orchid, atoska, Vojta and 8 others like this.
  16. Daffodil

    Daffodil Senior Member

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    u should trust kdm. he is 10 ahead of everyone else. you went to the right place right away, which is a great decision.

    he said there is no such thing as cfs, to me too!
    Beyond, Little Bluestem and Lymelight like this.
  17. szenn

    szenn

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    Did he help you?
  18. Daffodil

    Daffodil Senior Member

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    hi szenn. i dont know yet. i just received my test results and recommendations, which took 4 months.

    i have been sick for 21 yrs so i will not know for a long time, whether his recommendations will help me. however, i have been doing his GcMAF protocol (under another doctor's care) for 1 1/2 year and its the only thing that has ever helped me in 19 yrs.
    szenn likes this.
  19. szenn

    szenn

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    I am glad I went too.
    I have had such a horrible, horrible time this past six/seven months with unexplained symptoms, no sleep, worry etc. The worst part was the reaction of some members of my family , calling me a hypochondriac, telling me it is in my head, I need to see a psychiatrist etc. and UK doctors omg. My doc is a kind and lovely man but after six months of telling me I don't have candida on my tongue, I insisted on a swab and guess what it is candida. He now tells me it's nothing to worry about. Nor my IBS, bladder pain etc.
    The only medical professional who treated my symptoms with dignity was KDM. Not only that but he explained why they were happening.
    Trouble is in the UK GPs have limited knowledge. You can insist on referrals but even if you see a rheumatologist, neurologist etc if you symptoms don't fall into their remit then they don't help because they can't. They are too specialised.
    There needs to be somebody who sees the 'big picture'
    serg1942, Beyond, allyb and 3 others like this.
  20. szenn

    szenn

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    Wow well that's amazing
    What did he find?
    Why did it take 4 months?
    Thought results came back in two

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