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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

What labs / tests are you POSITIVE for ?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by xchocoholic, Nov 1, 2011.

  1. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    I'm not sure I'd like to try antivirals completely blind without any indications either, but didn't you say you have high (or highish) IgG, IgA and lymphocytes? That is much more solid that NK cell function tests. High lymphocytes with neutropenia is very strange.

    What level or range of levels are your IgG, IgA and Lymphocytes out of curiosity. A long time ago (1990's) Professor Komaroff found a subset of CFS/ME patients with high total IgG (15 - 20). It is a pity those patients weren't followed up as a subset.

    Also, have you ever had your ferritin and transferrin saturation done?
    golden likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    I have had a few iron studies done which were normal.

    pre antivirals i had a high total lymphocytes which has come down with antivirals, cd8 t cells have always been elevated above the normal range but have lowered with antivirals.

    I have had a number of tests which showed mild neutropenia but when on valcyte, which is known to lower neutrophils, they did drop to a moderate low level. this i think played apart in my sinus issues, this has eased up since being of valcyte.

    immunoglobulin tests which i havent had for awhile and my initial test i think pre antivirals showed slightly high above normal range for igg and iga immunoglobulins, igm immunoglobulins were normal. SInce antivirals igg has returned to normal, iga still high.

    I had been on antivirals for several months when i was somehow able to get a viral titres test for cmv. Its was 1.2, anything over 1 one classed as an active infection, i assume it would have been higher if i wasnt on antivirals. lab ranges etc seem different here to what i have seen over seas. I have not been able to get any viral titres measured since, although i have tried, i dont understand the reasoning for this?

    Lymphocytosis with neutropenia i dont think is rare amongst us as i have spoken with quite a few with similar abnormalities.

    Why dont u think an nk function test isnt a solid test? i think this test will eventually be a biomarker or a part of a group of biomarkers to diagnose ME??
    WendyM likes this.
  3. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    Thanks for the info Heapsreal - very interesting. Elevated IgG, above the nomral range (8-16) is very interesting. This would also tally with an autoimmune type phenomenon and not just viral. Do the antivirals help significantly? Also, have you had cidofovir or any of the really big antiviral hitters? It is a pity that Lipkin couldn't have used your blood for the viral detection study!

    I am a little cautious about making any connections of there being a common lymphocytosis or neutropenia because I have met quite a few patients who have those findings for reasons other than ME/CFS - malnutritional disorders such as Celiac disease, B12 deficiency/pernicious anemia, masked autoimmune diseases and it has to be said psychiatric conditions such as eating disorders. Plus there are plenty of patients with ME/CFS who don't have neutropenia or elevated lymphocytes.

    My own neutropenia disappeared after supplementing with B12 - I had low levels - so presumably it was just caused by paretial cell antibodies and subclinical deficiency.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    @kermit frogsquire I'm in Australia so I think would be too expensive to send there for research. But the no function test I had was a part of the cfs research being done here in Australia. They seem more interested in immuneabnormalities than pathogens.

    My doc said my igg levels were consistent with an ongoing infection. Don't think they were high enough to be in the autoimmune area.

    antivirals have helped me a lot but then I'm definitely in the herpes virus subgroup as my cfsme onset was cmv, ebv and chickenpox with a 6 month period. I was functioning at a 3 out of 10, now mostly an 8. Ratings aren't always accurate I find between individuals but I'm working 30hrs a week. Have short periods where I can do mild exercise and then weeks where I can't. Mostly used famvir and also did 18months of valcyte which helped a lot.

    I don't think there is any one type of immune profile for us other than to say it's dysfunctional. Seems to be just as many with high lymphocytes as those with low lymphocytes.

    I don't think antivirals are a cure but can improve ones condition if your in that sub group. Maybe some way to improve immune function with antivirals could get close to a cure.

    I have done heaps of b12 injections in the past, so I guess it's not the reason for my neutropenia. But than again chronic infections can also cause nneutropenia as well as neutropenia allowing infections to take hold???

    I think there's going to be sub groups of this illness. Maybe depends on what infections ones immune system allows through? Also chronic infection with immune system constantly on could lead to autoimmune conditions as well. We all have a lot of inflammation and oxidisation going on ???
  5. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,793
    Likes:
    1,462
    Florida
    @kermit frogsquire

    Love the name.

    I just wanted to add that eating disorders aren't always psychological. Plenty of celiacs or others with food intolerances are falsely diagnosed with eating disorders.

    In fact when I lost 20 + lbs due to celiac disease onset in 2005, one of my doctors warned me that I was looking anorexic. I don't know why he said that. I can't comprehend stupid.

    Tc .. x
    golden and Valentijn like this.
  6. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    True, but loss of weight with celiac disease would not be an eating disorder - it would be loss of weight due to malabsorption/diarrhea etc.

    Food intolerances also are not an eating disorder in my mind, but they can result in an inability to eat certain foods - I know it is a subtle difference, but I think it's an important one.

    In both cases the inability to eat certain foods can end up resulting in an eating disorder (fear of eating) and also people with true eating disorder can claim to have food intolerances as a way to justify their behaviour. Sometimes the lines get very very blurred.

    @heapsreal, wow, thats great that you can work 30hrs a week on the antivirals! It's interesting you mention famvir, that is like a half-way house between valacyclovir and valganciclovir isn't it? Have you had any issues with toxicity? It certainly sounds like you have solid evidence for a herpes virus activation. Have you ever tried adding any of the interferons as per Chia? Probably not worth the risk if you are up to 8 out of 10, but just wondered if you had tried them in the past.
    merylg and xchocoholic like this.
  7. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,793
    Likes:
    1,462
    Florida
    Hi @kermit frogsquire

    It looks like you misunderstood my post. I said people are routinely FALSELY dx with eating disorders when they actually
    Have food intolerances.

    So I seriously doubt the accuracy of a dx of an eating disorder.

    Even now, some are considering the gf diet to be a fad because they don't understand that many people can't tolerate gluten.
    The medical profession isn't helping with educating patients either. Sigh ...

    Tc ... x
    merylg and Valentijn like this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
    @kermit frogsquire i havent used interferon but have and still using interferon inducers, which basically stimulate your own interferon production.

    SO i have used immunovir, cycloferon and currently using arbidol for the first time. Im alternating between them every month or 2 to avoid any type of tolerance which is said to happen to these types of things. I feel they do help some.

    One time on cycloferon i had my nk function tested and it was above the normal range after being well below range, so i know the cycloferon works. Immunovir did seem to increase my nk numbers, wasnt able to get an nk function test at that time.

    If i had to pick between antivirals and an interferon inducer i would pick the antivirals.

    Currently i use the famvir for about 4 weeks and then see how long i last. The hope is eventually these interferon inducers will have my immune system working well enough that i wont need antivirals. At the moment i seem to last about 2-4 weeks before needing to go back on famvir.

    I usually monitor my immune function etc through lymphocyte subset test (testing we have here is limited and this is the best test for me we have) which i havent had in awhile, i see my doc soon so will get one then and see if my nk numbers have gone up as well as my neutrophil counts, thats the plan anyway.

    I also take a fist full of supplements for mito function and antioxidant effects. All i need is a cure for insomnia :)
    merylg likes this.
  9. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    Whilst what you say is true, there are also a very high number of people with eating disorders who are claiming to have food intolerances as a way to hide their eating disorder - so just playing devils advocate for a moment - imagine a doctor faced with someone with a food intolerance, how do they distinguish a real intolerance from the people with eating disorders?

    This in no way excuses doctors from misdiagnosing patients, but imagine for every real food intolerance patient, they see 10 people with anorexia who are claiming intolerances, it gets very very difficult. I think it is natural for doctors to become apathetic to the matter.

    I've seen time and again people who claim dairy/cheese intolerance tuck into carrot cake thinking the topping is icing sugar and have no problem - The topping is cream cheese! (I am speaking as someone with food intolerances by the way.)

    In my opinion food intolerances need testing properly - and treating seriously. Food should be put into capsules and the intolerance needs double blind testing. Tryptase and other marker may be helpful as well.
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,290
    Likes:
    8,994
    Amersfoort, Netherlands
    Link to the evidence please.
    xchocoholic likes this.
  11. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,793
    Likes:
    1,462
    Florida
    I've seen celiacs eat gluten intentionally. That doesn't mean they're not celiacs. Their reaction is going to happen. They're just in denial at the time.

    It's very difficult in today's environment to resist all the foods we're presented with. The foods we see typically contain the foods we're intolerant of. Papa Johns pizza ads on tv still make me salivate. It's a tough cycle to break.

    Tc .. x
    Valentijn likes this.
  12. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,071
    Clear Light
    just imagine the papa johns pizza covered in vomit. I find this immediately removes any desire for foods that make me ill :)
    xchocoholic likes this.
  13. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,793
    Likes:
    1,462
    Florida
    Yech ! I just ate. Lol. I usually envision a gf version. Tc .. x
    golden likes this.
  14. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,071
    Clear Light
    That would be a more pleasant way to do it :)

    Its terrible though to be bombarded by rubbish 24/7 and it can feel like a battle resisting the continuous pressure of junk.

    Yesterday a diabetic was telling me her seven year struggle to stop non diabetic foods but she still eats them.
    xchocoholic likes this.
  15. kermit frogsquire

    kermit frogsquire *****

    Messages:
    125
    Likes:
    37
    Totally agree, diabetics eating sugary cakes is a big one, especially as type 2 diabetics are often eldery and don't really understand.

    Hope people have got some more blood test abnormalities to share?
    xchocoholic likes this.
  16. Sparrow

    Sparrow Senior Member

    Messages:
    669
    Likes:
    767
    Canada
    Off the top of my head, this is what I can think of:

    MCV - mildly high (consistently since illness)
    MCH - mildly high (consistently since illness)
    DHEA-S - very low for age bracket (consistently)
    Alk Phosphatase - low for over a year now
    RBC count - borderline low
    EBV - elevated markers (incl early antigen)
    HHV-6 - elevated markers
    Bartonella - very elevated markers (igG)
    Brucella - borderline elevated markers (igG)
    potassium - sometimes low
    Copper - borderline low
    Blood pressure - got consistently extremely low at my sickest. Has gone up some since then, but not to where it was before my big crash.
    heapsreal and xchocoholic like this.
  17. halcyon

    halcyon Senior Member

    Messages:
    132
    Likes:
    86
    I've had the following show up one or more times since becoming ill in January:

    Low sodium
    Low potassium on serum test, borderline low on EXA test
    Boderline low magnesium on EXA test, normal on serum and RBC tests
    Low potassium to calcium/magnesium/sodium ratios on EXA test

    High albumin
    High bilirubin (I most likely have Gilbert's syndrome as this has been high for years)
    High RBC
    High hemoglobin
    High hematocrit

    High LDL cholesterol

    High eosinophils
    High CD8+ T lymphocytes
    High IgG4 subclass

    Low vitamin D (25(OH))
    High prolactin
    Low free testosterone
    Borderline low total testosterone, age considered

    High total urine volume
    Low 24 hour urine epinephrine

    Low ESR

    High serum B12

    Stomach biopsy 1+ positive for enterovirus VP1 protein and dsRNA
    Medium hiatal hernia
    xchocoholic and heapsreal like this.
  18. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,793
    Likes:
    1,462
    Florida
  19. halcyon

    halcyon Senior Member

    Messages:
    132
    Likes:
    86
    Latest abnormal result:

    Echovirus 30 Ab 1:320 (<1:160)

See more popular forum discussions.

Share This Page