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I am booked in to see Prof. de Meirleir in January

Discussion in 'ME/CFS Doctors' started by snowathlete, Nov 27, 2012.

  1. SOC

    SOC Senior Member

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    IIRC, Dr Rey does a follow-up PCR test when there is a high Parvo B-19 IgG to determine whether the high titre is due to high leftover antibodies from a previous infection (no biggie) or an chronic infection (biggie). Might be worth asking for if KDM doesn't do it automatically.

    I had a chronic Parvo B-19 infection detected by PCR. I had an IgG of 6.82 [>0.9 neg, 0.9-1.1 equivocal], so your viral titre is much higher than mine. That doesn't necessarily mean that you have a chronic infection, of course, but does make it seem more likely.

    Equilibrant knocked the socks off my relatively mild Parvo B-19 infection within 3 months. I only had to take 1 pill, although the standard dose is 6 pills. It did a number on the Coxsackie virus, too. :D
     
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  2. snowathlete

    snowathlete

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    thats encouraging. I dont mind having something so long as i can kill it. :ninja:
     
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  3. snowathlete

    snowathlete

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    So, I tried to find out some more information about my Parvo B19 result. Is my IgG result high? The tentative answer, I think, is yes - which suggests perhaps it could be a chronic infection even though I dont have IgM antibodies for a recent infection.

    I found this study where 65% of 500 women (quick read suggests they were not immunocompromised) were positive for B19 IgG, with a mean S/CO of 5.07.
    Most of the results that I have seen, even in one or two ME/CFS patients, were under 10, so my result may be of some signficance perhaps.
     
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  4. snowathlete

    snowathlete

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    Yeah I expect KDM will do me a PCR now, but if not I will request it, unless he plans to just go ahead and treat anyway. What alternative is there to Equilibrant, and if there isnt a good alternative, where and how could i get it? Do you have to be a patient of Dr Chai's?
     
  5. SOC

    SOC Senior Member

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    I think the alternative is gamma globulin, which can have some major side effects. We tried Equilibrant first and for me, it worked. Definitely worth a try.

    Here's where you can buy it. No need to be a patient of Dr Chia. As I understand it, this company is run by his son. http://equilibranthealth.com/
     
  6. Daffodil

    Daffodil Senior Member

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    a couple of hours after i drank the fructose, i started having a lot of digestive issues....i guess this means i am intolerant? maybe this explains why i hated fruit my entire life and my mother had to force me to eat it. i always felt a little sick after, especially with apples.

    how do they treat this? no fruit???
     
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  7. snowathlete

    snowathlete

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    I think so yeah, diet to avoid it. Some fruits are higher in it that others. I don't know what else its in.

    Thanks SOC, ill see what de meirleir says first but nice to know there is this option. It has E102 / yellow #5 in which may be an issue, it makes me go psycho. Haven't had it since I was a kid. Probably only a very small amount in the tablets though, so maybe ok.
     
  8. globalpilot

    globalpilot Senior Member

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    Your ferritin is extremely high. My reading in the past found average was around 90 for women. Have you looked into hemachromotosis ?



     
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  9. snowathlete

    snowathlete

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    Yeah it is quite high. I have looked briefly at Hemachromototis. I understand it is often (though not always?) genetic. My 23andme data says I dont have it, based on my dna. It can easily go a lot higher than mine in Hemachromotosis from what I have read. I havent yet looked into whether they test all the relevant markers, but my guess is that they do in this case.

    Why is it high then? I dont know. I know that it is often abnormal (high or low) in ME/CFS patients. Once I have the rest of my results and De Meirleir's report I will hopefully know more.
     
  10. GcMAF Australia

    GcMAF Australia Senior Member

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    yeah
    60-70% of the CFS patients of Dr Lewis are fructose intolerant
    so basically little fruit
     
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  11. ukxmrv

    ukxmrv Senior Member

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    I met another patient for KDM's who had lost considerable weight by giving up fruit (had a reaction to the Fructose test and he suggested that she stop eating it for while to see what happened). She had been obese and trying to lose weight for a long time. Stopped the fruit and finally lost weight.
     
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  12. WillowJ

    WillowJ Senior Member

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    ESR range - some labs will put a lower limit on the reference range. It is said that PWME may have a low ESR. Low ESR is discussed in this article, but how low is "low" is not established there.
    http://labtestsonline.org/understanding/analytes/esr/tab/test

    given by what comes after, seems to be the differential on the CBC.
    http://labtestsonline.org/understanding/analytes/differential
    see above article

    In addition to the conditions listed in Wikipedia, many PWME have elevated ANA. My computer is unhappy so I can't get refs just now.
     
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  13. santi

    santi

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    Here are my comments on some of your results

    Eosinophils 4% [0-4]: eosinophilia may be due to parasitism. Shouldn't be high on a normal pacient.

    ANF (Antinuclear factor) 40 [0-40]: autoimmune marker. There are a bunch of others too. Not good to have even one of them positive. In my case ANF=0.

    Urinezuur (Uric Acid) 7.1 [2.2-7.4]: Uric acid is a waste of the organism and ideally it would be 0, since is of no use. Having it high may indicate poor diet, prolonged fasting, intense exercise prior to analysis or medical conditions. Some people tend to have it pretty high (>5).

    Eiwit elektroforese (Protein electrophoresis): protein deviations may indicate several problem and is not normal to have a single one out of the limits. Even being close to them may make some doctors suspicious as I've been told.

    Parvovirus B19 IgG pos 24.3 [1.1> pos]: If you want to look for current infection, probably you should test for B19 antigen (B19 antigen enzyme immunoassay (EIA)), not the antibody that is generated by your body and can be present lifetime.



    No it's not. Lowest value is not 40, but less than 1 (<1/40).
     
  14. snowathlete

    snowathlete

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    thanks santi for your feedback, it all helps paint the picture.

    from the little that I read about ANF, it seemed to be saying that doctors usually only care when it is at more than 160, or sometimes 80, but that seems strange to me. I did have the same test done by the NHS a couple of years ago and that was reported as negative. I also had some other autoantibodies tested at that time and they were reported as negative too.

    I suspect that De Meirleir will want to test more for Parvovirus given my result.
     
  15. clive powney

    clive powney Senior Member

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    Did this testing lead to any positive treatment/outcome? I had tests for lyme done in both quest labs and a lab in Brehmen Germany , both came out positive. I was on a variety of antibiotic regimes for around 18 months prescribed by the breakspear clinic in the UK but never got any better
     
  16. clive powney

    clive powney Senior Member

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    Snowathlete - you mentioned in an earlier post that you would post how much the tests cost?
     
  17. WillowJ

    WillowJ Senior Member

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    "they" say that it's not unusual for "healthy" people to have a low positive ANA and for this reason titers up to 1:80 are always counted as a negative result.

    1:120 (or 160, whichever is the right number for this level) is borderline; some will consider this negative and most will consider it positive, but the significance of it to a normal medical doctor is to watch the patient for development of a recognized autoimmune disease; in the US they would refer to rheumatology for this purpose.
     
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  18. snowathlete

    snowathlete

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    so at 40, maybe it is ok...:confused:
     
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  19. snowathlete

    snowathlete

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    I thought i had done that somewhere, but i may have only meant to, and forgotten.

    The costs worked out as follows:
    €80 or 90? each of the breath tests
    €280(ish - can't remember exact figure) for the stool test
    €2,500 Euros for the other blood tests at Redlabs.
    €90 for the second lab tests in in Belgium
    I think I paid a couple of hundred dollars for a allergies panel from a US lab too. Cant remember exactly.
     
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  20. maryb

    maryb iherb code TAK122

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    Just wondering if you had your report yet? Able to share?
     

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