The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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My first appointment with KDM

Discussion in 'ME/CFS Doctors' started by Drass, Jul 14, 2015.

  1. Drass

    Drass

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    Hello,

    last week i had my first appointment with De Meirleir in Bruxels. The meeting was very short, something like 5 mins but i had to stay longer in order to make the lactose/fructose tests.

    Was a bit weird for me that more than the 95% of the patients were females.. knowing that also more than the 90% of the patients are supposed to be infected with Lyme.
    Women are more likely to be bitten by the insect than men? they develop more intense symptoms?

    Talking about the doc. He didn't pay too much attention to what i had to say to him, just was focused to fill his forms in order to know what kind of tests to perform.

    I got tested for (with prices):
    First day- 664.50e
    80e Consultation
    234.50e Borrelia to ArminLabs
    90e Fructose
    90e Lactose
    160e Food Panel
    10e Urine test

    R.E.D. Labs - 2280e
    164,00e Proinflammatory cytokines panel
    62,00e CD57+/CD3- Absolute count
    70,00e Soluble CD14
    70,00e Prostaglandin E2
    70,00e Vascular endothelial growth factor
    70,00e D-lactate
    70,00e L-Lactate
    50,00e DNA extraction blood
    53,00e HHV6 Human Herpesvirus 6
    132,00e Molds igG panel
    99,00e Mycoplasma spp + Pn / PCR
    99,00e Bartonella spp / PCR
    99,00e Midichloria mitochondrii / PCR
    159,00e Chlamydias serologie- IgG & IgA/M
    159,00e Yersinia Serology - IgG & IgA/M (immunoblot)
    46,00e Tularemia Serology
    180,00e Zoonosis
    140,00e Babesia genus FISH
    75,00e IgA/IgM intetinal bacteria
    280,00e Metagenomics stool Analisys
    63,00e FOB-Trans. + Lactof.-Calprot.
    70,00e Soluble Immunoglobuline A



    By the moment, i got the results from:
    sigA (Soluble Immunoglobuline A) 13 µg/ml normal range 510/2040 µg/ml
    calprot Calprotectin Negative
    Fecal Occult Blood Negative
    Lactoferrin Negative
    Transferrin Negative



    I will have to wait still a month to get all the results and the letter from the doc.



    Some questions :)

    1) Does anybody knows whats that sigA about? is it so bad to have such a low level of it?
    2) Is it possible to make the follow up of the second visit by skype/phone?
    3) Why the amount of female patients its so so so high compared with male?

    Regards,
    D
     
    Joh, sarah darwins, merylg and 2 others like this.
  2. Valentijn

    Valentijn The Diabolic Logic

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    Men and women have differences in their immune systems, hence it's not uncommon for diseases to affect the genders disproportionately. So even if each gender is infected at a similar rate, there might be a tendency for only one gender to have a dysfunctional response in much larger numbers, possibly progressing into a new disease or more severe disease.

    Hence Lyme might be a trigger for ME, as several viruses and bacteria are known to be, but only in a subset who are predisposed due to gender and probably other factors as well.
     
  3. justy

    justy Senior Member

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    Hi Drass - im having treatment at the clinic at the moment so probably saw you there!

    M.E is know to affect more women than men...as Val says our immune systems are different (amongst other things ;)) so could account for it. I'm sorry I don't know the answer to your other questions.

    Also I suggest you will wait more than a month for the test results and Dr letter - it usually takes around 3 months. Follow ups can be by phone or in person. I suggest you make the appointment soon.
     
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  4. MadeleineKM

    MadeleineKM Senior Member

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    Testosterone protects a bit and mask symptoms, ME tend to get worse certain times in the womens cycle. Often during ovaluating so the hormones make different responces in the immune system. I was at a conference with Judy Mikovits and she talked about this with hormones, quite interesting. The first meetings with KDM tend to be short because he has some tests he need to make at first to start seeing the picture of your illness, he will know more for your next consult
     
  5. msf

    msf Senior Member

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  6. msf

    msf Senior Member

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    It's soluble IgA, it's a measure of how much IgA you have in your gut.
     
  7. Apple

    Apple Senior Member

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    5 minute appointment?? o_O Did he not want to know your history etc?

    If you don't mind me asking; did you have all the tests done on the same day as your appointment? I'm planning on travelling to see him..

    Good luck with your other test results :bouquet: Where were you travelling from? How long have you been sick?
     
  8. msf

    msf Senior Member

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    I think one of the reasons KDM doesn't respond sometimes is that, while you may think your symptoms are specific to your case, they are actually common in his cohort of patients. If you mention something out of the ordinary (in terms of his cohort of patients) he will often respond to this.

    If you are able to give a stool sample on command then one day should be enough, but if you prefer to take your it's easier to come back the next day.
     
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  9. Drass

    Drass

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    I flew from alicante to charleroi and took a minibus to the center, then a metro till somewhere close to gare de nord (where to pick the bus to the military hospital, close to the clinic).

    I did all the tests but one on tuesday (fructose). It was 16 tubes of blood, stool/urine samples, lactose and fructose tests.

    I have been sick since almost 15 years, but im much worse since the last 3, when i had a treatment with interferon+ribavirin for the Hepatitis C. ( I think i born with Hepatitis C, my mother had the same kind as me)

    regards,
    D
     
    Last edited: Jul 14, 2015
  10. msf

    msf Senior Member

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    Wow, Hepatitis C and ME, that doesn't sound fun. I remember Dr. Chia saying that interferon had a negative effect on his patients.
     
  11. Valentijn

    Valentijn The Diabolic Logic

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    A lot of forms get filled out before going into the office. I don't recall exactly what, but a medical history might have been part of it. At any rate, the initial appointment is mostly just for saying "hi" before the testing starts, and maybe a few questions to figure out the best direction the testing should take.

    Testing is also often refined based on the results from the first batch, and as any other symptoms or side-effects emerge. For example, starting certain types antibiotics made my Bartonella marks flare-up several time over the years, and I finally noticed the pattern of that after starting to treat Lyme at his clinic. Bartonella had tested negative (it does 80% of the time for people who are positive), so now I'm being treated for that as well.

    @Drass - Anyhow, I'd expect a lot more discussion to happen at the following visit. I'm not sure if it's feasible to plan on having that on the phone, if more testing is indicated based on results from the current batch of tests. Though since you're in Europe, maybe your doctor or a local lab can do the blood drawing and properly prepare and ship the samples as needed. Shipping might be expensive, but it's gotta be cheaper than flying :p
     
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  12. A.B.

    A.B. Senior Member

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    In addition to what Drass said:

    The tests are spread out over two days, but most are done on the first day.

    I was also a bit surprised by the brief first consultation - but I'm guessing de Meirleir has heard the same stories so many times. Treatment will depend on the test results.

    After several months you'll get your results plus a treatment recommendation. I'm still waiting for my results. Fingers crossed for useful information :)
     
  13. MadeleineKM

    MadeleineKM Senior Member

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    In Norway we fill out a very detailed questionaire for his appointments and write a history witch include what medisine we use and what food we dont handle so well. I think he does a good reseach before deciding what tests that he purposes to do
     
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  14. Daffodil

    Daffodil Senior Member

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    @Drass ..many CFS patients have low sIgA, as do autism patients and others. It is a measure of mucosal immunity. It can not always be rasied, as it can be genetic. About 30% of the population has low sIgA.
     
  15. Drass

    Drass

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    Well that can explain then why i have always had stomach problems. I was told with 13 years old that i had inflammatory bowel disease after a colonoscopy and years of having problems..


    About the first visit and the procedure:

    They give you one questionary as this one when you enter to the clinic:
    http://s14.postimg.org/4btyjatj5/11349073_10206709375723795_1436713654_n.jpg
    http://s24.postimg.org/59g8cuazp/11336024_10206709375683794_1436575684_n.jpg

    When you meet KDM you give this questionnaire to him, and he makes you some questions as: How long are you ill, how it started, do you have any sickness etc, filling his own questionnaire.
    After this the visit is over and you with the nurse to start making the analysis.

    As i saw that others were filling a different questionnaire i went to reception to ask about it, and they told me that is the follow up one. It looks like this:
    http://s28.postimg.org/7wt06k6j1/11650519_10206710252785721_285008600_n.jpg

    I hope this info is useful for you :) I would have liked to see it before going to the clinic to have a good idea of how it looks the procedure.


    Greetings
    D
     
    Last edited: Jul 14, 2015
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  16. ErdemX

    ErdemX

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    Thank you @Drass for all the info including the papers :) I will be visiting in 2 months, I hope you can get a working treatment plan..

    Did they specify if you should visit again after you get your initial letter from the doc?
     
    LivingwithFibro likes this.
  17. Drass

    Drass

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    @ErdemX Yes, they told me to appear on september 14th.
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    They tend to be a bit hopeful as to when your test reports and KDM's report analyzing them will be ready. About 3 1/2 months is more realistic.
     
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  19. Drass

    Drass

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    I just wonder why some people is diagnosed with Borrelia if they are having tests from the NHS, armin labs and Red labs negative, and just cause of the symptoms are getting it.

    When people are getting a negative result on a test of HIVs, there ends the topic, they don't have it. Why Borrelia after getting several negatives even from the trusted labs as Elispot, its still being diagnosed as positive?

    D
     
  20. Valentijn

    Valentijn The Diabolic Logic

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    HIV testing is highly accurate. Most Lyme testing is highly inaccurate and provides a shockingly high number of false negatives - bordering on 50%. The Elispot-LTT improves the false negative problem considerably, but still has a false negative rate of around 10%. There is also the matter of Lyme basically hijacking the immune system, which has been proven to happen, and I'm really not sure how that affects the results.

    Additionally, if someone has a different infection commonly transmitted by the ticks who also transmit Lyme, as well as Lyme symptoms, that gives a pretty strong basis for Lyme treatment. And at the end of the day, many people who are suffering and very debilitated by their symptoms are willing to take a chance on a treatment - and their choice in that matter should be respected.

    Testing repeatedly is often not financially feasible. So I'm not really sure why you think it's common that people are repeatedly testing negative via any single test, including the Elispot-LTT, and being treated solely on symptoms regardless.
     
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