Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

New test result,same old story

Discussion in 'General ME/CFS Discussion' started by notmyself, Mar 17, 2017.

  1. notmyself

    notmyself Senior Member

    Messages:
    286
    Likes:
    365
    hi there,

    I receive some new results today..

    I check my immuglobines

    IgG -11.24 g/L range 5,40-18,20
    IgA- 1.72 g/L range 0.63-4.84
    IgM -1.38 g/L range 0.22-2.4
    IgE- 17.8 ui/ML range lower than 100


    Any relevance to this..?..the doctor said that these together with my other blood tests proves that there is no pathogen in my body or any dysfucntion..and that if i have a problem is not from the immune system..is that true?..
     
  2. eljefe19

    eljefe19

    Messages:
    483
    Likes:
    633
    Not necessarily. At OMF they offered me RTX for several elevated autoantibodies. My IG levels were all "normal" and they still believe there is an immune component, otherwise I'm sure they wouldn't be recommending RTX. My NK numbers were both normal as well.
     
  3. mrquasar

    mrquasar Senior Member

    Messages:
    215
    Likes:
    809
    Houston, TX USA
    Which autoantibodies did they test for at OMF? And how much were your visits and tests there? Did you have insurance?

    I would love to get these tests done but I don't have insurance so it will be a significant financial hit. Have to decide it's worth it first.
     
    Shoshana likes this.
  4. Kati

    Kati Patient in training

    Messages:
    5,463
    Likes:
    19,551
    Hi @notmyself remember that there are no aproved biomarkers for ME, but the closest of them all would be NK cell function. While some from our patient group have Immune globuline abnormalities, not everybody does.

    These test results simply show you do not have these abnormalities, but it is not reflective on whether you are sick or not sick.

    I cannot wait on the day when the lab tests will truly show how sick we feel.

    Best always, Kati
     
    Shoshana, Cohen2, notmyself and 2 others like this.
  5. eljefe19

    eljefe19

    Messages:
    483
    Likes:
    633
    For example, my NK cell function test was normal. But my doc says unequivocally I have ME. So, obviously it's not a biomarker. @mrquasar At OMI they send off your blood to a german lab, and they test for a few autoantibodies. I had I believe 4 positives, against Alpha Adrenergic receptors and a couple Muscarinic. Most of my test results were normal, I also have done the Cunningham panel which I know they use. It tests for some more autoantibodies, of which I only had one abnormal result. Basically, if you have any of these autoantibodies, they are going to offer Rituximab. Be prepared the cost is almost 50k a year. It's crazy. I'm happy to answer any other questions too.
     
    Shoshana, Diwi9 and Cohen2 like this.
  6. notmyself

    notmyself Senior Member

    Messages:
    286
    Likes:
    365
    HI, i wish that aswell,but regardless of that i still need to find an organic issue to take out of my head that anxiety is causing me all this..The NK cell test is pretty expansive ..500 euros is ridicoulous ..i am also almost sure that it will not show low activity ..i feel i am immune to any virus around,in my house everyone was sick with flu except me,,i even drink from the same bottle to see if i get the flu..and i didin t..That can mean my immune system is overactivated ,but in this case why all my immunoglobulins are normal..i just hate medicine
     
    Shoshana likes this.
  7. Kati

    Kati Patient in training

    Messages:
    5,463
    Likes:
    19,551
    Hi @notmyself I have normal immunoglobins. i have ME, I have been sick for 8 years and I haven't had a single cold since onset.

    i understand your need to find an organic abnormality. I am also impatiently waiting. I keep on hoping for abnormal results because with all of the normal results, my family dr thinks it's all in my head. i get it.
     
    Shoshana and notmyself like this.
  8. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,379
    Likes:
    24,200
    USA
    @eljefe it's interesting b/c my NK functioning tests are very low but we are fairly certain now that I do not have ME/CFS vs. autoimmune disease and fighting to get insurance coverage of RTX. I was told low NK functioning can be found in many illnesses, like MCAS and mold exposure, and not unique to any one disease.

    It's not an option for me to pay for RTX privately (but my insurance covers all the blood tests and basic stuff). We got insurance to cover my IVIG (my co-pay is expensive but manageable) so am hoping it will be the same for RTX.

    I have so many abnormalities on tests that I've lost count. It seems (although I do not know why) that tests are normal in me/cfs and mine are so off that it also must make my docs think it is another issue.
     
    mrquasar likes this.
  9. Silence

    Silence

    Messages:
    81
    Likes:
    68
    Northern CA
    My IG are pretty much normal too, but my CD4 is always low... like in the 300s. You could ask for a lymphocyte panel. You could also check you IGG subclasses. I have low IGG subclass 3 deficiency with normal IGG levels- I think its common in this disease. At least that's what I remember my Dr. telling me.
     
  10. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    878
    I asked my OMI doc about the German testing and was told it might be something we will want to do down the road and that right now it costs $500 but that the price may come down in the future.
     
  11. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    878
    I actually just an hour ago got back my results from my big initial OMI testing. My doc messaged me in regards to it saying that I have lots of abnormalities and we will go over them during our next phone appt". Hate the waiting.

    Going thru the results myself now. One thing that stands out is that my "Complement Component c3" and "Complement Component c4" are both are below normal range with C3 being extremely low. The posts online I am finding say these are findings found in Lupus but my ANA has always been negative. Going to look into this.

    NOTE: I am NOT referring to Complement C3a and C4a as those are not the same thing as C3 and C4.
     
    Last edited: Mar 19, 2017
    Gingergrrl likes this.
  12. notmyself

    notmyself Senior Member

    Messages:
    286
    Likes:
    365

    i make those those aswell...
    Complement C3 - 0.9 range 0.82-1.85
    Complement C4- 0.22 range 0.15-0.54

    they are in range ..even tho C3 in kinda closed to low..
     
  13. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    878
    Your supposed to have complement C3 and C4. The are an important part of your immune system. If they are within range then they aren't significant.
     
    Valentijn and notmyself like this.
  14. valentinelynx

    valentinelynx Senior Member

    Messages:
    640
    Likes:
    1,392
    Tucson
    Hi @Gingergrrl! Me, too, trying to get insurance approval for RTX. I've got the same antibodies as you, if I recall. However, I lost my insurance coverage for IVIG when I had to change insurance companies in January (BC/BS left Tucson's individual market), so we're fighting for that now, too. Even though my IgG is obviously low. Such an endless tail-chase!
     
    Gingergrrl likes this.
  15. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,379
    Likes:
    24,200
    USA
    My insurance situation is complex (won't bore everyone w/the details) but can't see any scenario before May/June that I'd be doing RTX (for a few different reasons).

    So BC/BS left the marketplace (ACA) plans in your area and you just got dropped?! Am so sorry to hear this.
     
  16. Starlight

    Starlight Senior Member

    Messages:
    124
    Likes:
    658
    Do any of you know what is the name of the German lab. Doing the testing. I am in Europe and would be interested in getting some testing. I imagine OMI would be using a reputable lab and would be glad of any help with this.
     
  17. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,379
    Likes:
    24,200
    USA
    Yes it is called "Cell Trend" lab and the head is Dr. Harald Heidecke. I have all of the info that I could give you later if you can't find them (but am not at home right now).
     
  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    1,999
    Likes:
    5,048
    USA

See more popular forum discussions.

Share This Page