1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

My first appointment with KDM

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

  1. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Got an email from clinic with some more results. Trying to go through them now and make sense of them.
     
    maryb and Valentijn like this.
  2. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Going through them is very slow going, not being helped by fact I'm really dopey and super tired, overdid it big time last two days.

    Both breath tests normal. Food wise: banana, cranberry, pineapple and broccoli are issues for me.

    After getting the LTT test back positive a few weeks back, I was anxious to find out results for other Borrelia tests, but they were negative, as well as co-infections etc

    At the moment, I have ignored the results that look ok, and just honing in on the 'reds'.

    Aspergillus Niger was 36.8 with ref range of 0-25

    CD57 was 55 with ref range of 60-360

    DPP4 was 16.26 with ref range 18.80 - 33.79

    I'm working through them gradually, the next lot are the cytokines (I think that is what they are called) and they seem all off. I'm going google crazy trying to work out what even these tests are for, let alone what the results mean for me.
     
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,498
    Likes:
    9,612
    Amersfoort, Netherlands
    @RML - Aspergillus Niger can cause hearing loss due to infections of it in the ear.
     
  4. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    IL-1 beta serum 342 ref range (0-3)
    IL-6 serum 224 ( 0-5)
    IL-8 20960 (0-15)
    MCP1 261 ( 0-165)
    MIP-1Beta Serum 7694 ( 0-155)
    TNFS serum 26 (0-6)


    Ok so I am freaking out right now, I might cry. Those results are not just high but sky rocketing off the charts high. Is it wishful thinking to assume it must be a mistake?
     
    cigana likes this.
  5. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Metagenomics Stool test showed my diversity index of 3.99 which is Low category.

    My Gram +/Gram- Ratio also low 4.38.

    And firmicutes/bacterioidetes ratio also low 4.51. It says with it that a low ratio is assoc with gut inflammation.

    9 came back out of reference level. And two were at 0 - Bifidobacterium and asaccharobacter.


    I also got results from the lab I was worried about as I never received the invoice, but they have been tested anyway.

    From here, the IgG3 was low at 0.15 with ref range 0.20-0.93
    And 1.25 Di-Oh Vit D was high at 80.5 ref range 20-75.

    anti-nuclear factor was negative, CRP, Ra Latex and other vit D test were normal.
     
  6. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Redlabs showed positive for Fecal Occult Blood but negative on Calprotecin, lactoferrin, transferrin.

    Yersinia and Toxomplasmosis are negative.
    Chalymdia (Pneumoniae, trachomatis, Psittaci) all negative.
    Nagalese is fine.
    Bartonella henselae is negative
    Coxisella and Ricksettia is negative.

    I was also tested in 2 more ways for Borrelia but they are negative. Only a positive on Ltt test.

    Epstein Barr and herpes were negative.

    Elastace, VegF, Soluable CD14, phagotest are fine. Even the protoglandins test came back in range.

    The perforin test came back in range too, but only just, it was 749 with a ref range of 0-750.

    So that is pretty much that, my long awaited test results. Can't wait to get back to KDM next week to hear what he thinks of it all.
     
    merylg and Valentijn like this.
  7. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Thanks for that, I was doing a quick 'google' on each test as I went through it, I came across this also. Intersting, also said it could be temporary.
     
    Valentijn likes this.
  8. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,498
    Likes:
    9,612
    Amersfoort, Netherlands
    No need to freak out ... whatever is wrong with you has been wrong for quite a while :D Nothing has changed except that you now have proof that something is wrong and clues to finding out what it is. That's progress!
     
    Bessie, justy, merylg and 3 others like this.
  9. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Yeah, actually it is a bit weird to some test results showing something is up. All them docs that keep saying your tests are fine/normal/ok there is nothing wrong with you blah blah blah. Of course because I only had vit and mineral level testing done, nothing wrong with them.
     
    merylg, ahimsa, Sushi and 1 other person like this.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,066
    Likes:
    6,031
    Albuquerque
    @RML

    Great you got your results but don't freak out or break your head trying to understand them. The important thing is how the results all fit together so just think up some good questions for your appointment with KDM. That is what he looks at--not individual tests so much as the whole picture together.

    Probably the LTT test is the most significant one for Borrelia.

    Keep us posted!

    Sushi
     
    justy, ahimsa, RML and 1 other person like this.
  11. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Thanks guys!
    I will give it a break now, and wait to see what KDM has to say about it. I did briefly talk to Dr Charles Shepherd a few days ago, and mentioned the Ltt results to him. He seemed to be skeptical of M.E patients being diagnosed with Lyme, especially from German labs. But then he had never heard of the LTT test.

    Anyway, that is just a side note, I have my own specialist for now, and I am happy to trust him with interpreting the tests and giving me feedback on them.
     
    justy and merylg like this.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,066
    Likes:
    6,031
    Albuquerque
    Of course that is from Infectolabs website but it is clear that the FDA has approved the methodology of LTT testing, though perhaps not for Borrelia.

    Sushi
     
    Valentijn likes this.
  13. cigana

    cigana Senior Member

    Messages:
    617
    Likes:
    206
    UK
    Hi RML,
    Thanks for posting your results, it is always interesting to see.
    Don't freak out too much about the IL-8. Almost every KDM patient results I've seen have extremely high IL-8. I think the first thing you should do is get away from the mold!
     
    Sushi likes this.
  14. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    The mold result is another positive I wasn't expecting as i don't remember mold being an issue in any of the places I've lived.
     
  15. acer2000

    acer2000 Senior Member

    Messages:
    587
    Likes:
    230
    To what does he attribute the high IL-8? I have never gotten a good answer to that one from my Dr.
     
  16. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Well, I have not seen him again yet to discuss the implications of the results, but I will be asking him when I see him and see then what he makes of it all.
     
  17. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    Will KDM prescribe sleeping tablets for me? Or does he just stick to treating what he finds on the tests?

    In the months running up the Xmas, I had a period where I was doing very well, or at least much better. Many people commented on it to me, I was at 2 funerals in Nov and Dec, so family and friends that don't see me often mentioned it. My aunt even suggested I might be able to get a job soon, ok so I didn't really think that, but I was stronger and more able.
    From mid- January, I have been on a downward slump though. At first, I wasn't too bothered by it, I often have good periods followed by bad periods and assumed that that bad patch would lift after a while. But it's mid-May now and it hasn't yet.

    From October to early January, I was on sleeping tablets so I am thinking that perhaps these were helping and resulting in a marked improvement.
     
  18. justy

    justy Senior Member

    Messages:
    2,678
    Likes:
    2,891
    U.K
    I would certainly ask him about it. Like you I have these inexplicable better times followed by months of crashing - other times I bounce back more quickly - I can never work out what causes these.

    When is your follow up appointment?
     
  19. RML

    RML Senior Member

    Messages:
    148
    Likes:
    294
    Dublin
    It's on Tuesday, I fly out tomorrow. So I'm trying to plan what to ask him etc, but I have a million and one questions and many of them probably stupid questions. I don't want to be wasting the short time slot for meeting him

    It's pretty annoying when I cant work out what to avoid or change. I wondered if It was a certain supplement making the difference. But it's more likely my sleep was different or better resulting an improvement because of sleeping tabs.
     
    Little Bluestem, Sushi and Valentijn like this.
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,066
    Likes:
    6,031
    Albuquerque
    @RML

    As far as I know he has no problem prescribing sleep meds. Many of us get them through our primary care, but he has approved what I have been taking, so I'd guess that if you ask him, he'd prescribe for you.

    BTW, I don't know how filling a Belgian prescription in Ireland would work for you, but I have sometimes filled scripts in Belgium before I left--they are not very expensive there. If you are staying at the Eurovalley, they have driven me to a pharmacy in Vilvoorde to fill prescriptions. Himmuitas will give you a list of pharmacies that are used to filling KDM's scripts.

    Best wishes for your trip and appointment! No questions are stupid--if it is something you want to know, ask away!

    Sushi
     
    justy, Valentijn, RML and 1 other person like this.

See more popular forum discussions.

Share This Page