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Is my immune system collapsing? New lab results, more worries...

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Jul 20, 2015.

  1. Antares in NYC

    Antares in NYC Senior Member

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    Lately I'm getting afraid to get new lab tests to check how I'm doing. In recent years it seems like my entire body is falling apart, one system at a time.

    My latest test numbers relating to my immune system just keep getting worse. I wanted to share these lab results here, so maybe someone with more knowledge in these matters can explain what's happening to me. The samples were taken two weeks ago, I just got the numbers today:

    As usual, EBV and HHV6 levels are off the roof.
    • EBV Early Antigen Ab IgG: High 29.0 U/mL (ref. 0.0 - 8.9)
    • EBV Ab VCA, IgG: High 85 U/mL (ref. 0.0 - 17.9)
    • EBV Nuclear Antigen Ab, IgG: High 35 U/mL (ref. 0.0 - 17.9)
    • HHV6 IgG Antibodies: 2.3 (positive >0.99)
    But then we get to NK cells and immune function:
    • Abs. CD8-CD57+ Lymphs: Low 35 /uL (ref. 60 -360)
    • % CD8-CD57+ Lymphs: Low 1.6% (ref. 2 -17)
    • NK Cells, Function: 12 (low end) LU30 (ref. 7-125)
    Then we go to IGG and IGA:

    IgG, Subclasses(1-4)
    • Immunoglobulin G, Qn, Serum: 923 mg/dL (ref. 700-1600)
    • IgG Subclass 1: Low 399 mg/dL (ref. 422-1292)
    • IgG Subclass 2: 369 mg/dL (ref. 117-747)
    • IgG Subclass 3: Low 38 mg/dL (ref. 41-129)
    • IgG Subclass 4: 24 mg/dL (ref. 1 - 291)
    IgA, Subclasses (1-2)
    • Immunoglobulin A, Qn, Serum: 211 mg/dL (ref. 91-414)
    • IgA Subclass 1: 172 mg/dL (ref. 73-301)
    • IgA Subclass 2: High 107 mg/dL (ref. 13.4 - 97)
    And finally we get to this:
    • Human Trans.Growth Factor beta 1 (TGF-b1): High 4040 pg/mL (ref. 344-2382)
    • Antiparietal Cell Antibodies: 106 (positive >24.9)
    What am I to make of all these progressively worsening numbers? What's the meaning to the very low numbers of several immunoglobulin subclasses?
    What's the meaning of having such a very high Human Trans. Growth Factor beta 1? What is happening to me? What now?

    So sick of being sick, frankly.
     
  2. SOC

    SOC

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    Those numbers look similar to mine. Not exactly the same, but generally similar. I don't have any info on TGF-b1 or antiparietal cell antibodies, so I haven't a clue what they mean.

    When my IGG subclasses looked generally like yours, I was told not to worry about them until they got worse... which they did. They finally got bad enough that I got IVIG, but it's too soon to tell if it's going to do me any good.

    Your NK cell function is still in range, so you probably won't get any doc interested in that, but you could try inosine, which you can get without a prescription. My daughter's NK cell function went from very low to high normal over the course of a year with it.

    All I can get from my doctors is that it looks like immune exhaustion, probably from an as-yet-unidentified pathogen and all we can do is fight the infections we can find and support my immune system as well as we can. For me, that means antivirals, possibly Imunovir at some point in the future, and IVIG.

    Who's your specialist? Has s/he any recommendations about any of this?
     
    AndyPandy, Valentijn, justy and 4 others like this.
  3. Antares in NYC

    Antares in NYC Senior Member

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    Hi SOC, thanks for your reply.
    I don't see my CFS specialist until early August, so I don't have any official opinion on these lab results. Another doctor I've been seeing, a Lyme specialist, has definitely suggested IVIG recently.

    In terms of how these numbers look compared to previous tests, this is what I know, for your reference:
    • Antiparietal cell antibodies: my body's inability to absorb B12 --> these numbers just increased from the low 90s to 106.
    • NK function was 16, now it's 12.
    • NK CD8-CD57 % was 1.8, now 1.6
    • EBV numbers all around higher than they were before.
    • IgG Subclasses 1 and 3 were slightly low before, now they are definitely low.
    • Then there's the numbers for Human Trans.Growth Factor beta 1, which are extremely high. It's the first time I see this, and I have no clue what this means.
    Overall, all numbers keep getting progressively worse with each test, no matter what. The only positive in these results is that my CD19 levels came down to normal, which were alarmingly high two months ago, sending two of my doctors into alarm mode.
     
    Last edited: Jul 21, 2015
  4. jess100

    jess100 Senior Member

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    Who will you be seeing in August?
     
  5. Antares in NYC

    Antares in NYC Senior Member

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    My ME/CFS specialist, NY-based. I would only talk about my specific doctors on private one-on-one chats, not out in open threads.
     
  6. jess100

    jess100 Senior Member

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    OK got it
     
  7. Rlman

    Rlman Senior Member

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    what time did you do the blood test? IGG and IGA are highest in the morning like 6-9AM.
     
  8. SOC

    SOC

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    Mine too, although my EBV and HHV6 titres drop over time when I'm on AVs, so they're not that high anymore. They do climb again when I've been off AVs for a while, but now we don't delay getting me back on AVs when that happens.

    I've found it rather discouraging that my immune labs just keep getting worse even though symptomatic treatments have made me more functional and helped me feel much better. Something is clearly going south and we don't have it under control. My best hope right now is that the symptomatic treatments, including the IVIG, will keep me functional enough to survive until our researchers and clinicians figure this thing out... and get us a treatment that deals more effectively with the root cause than anything we have so far.
     
    AndyPandy and Antares in NYC like this.
  9. Antares in NYC

    Antares in NYC Senior Member

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    The samples were collected around 9am.
     
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  10. Antares in NYC

    Antares in NYC Senior Member

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    I just had a chat with another doctor, who told me that having insurance companies approve IVIG therapy is very difficult, and they often reject it first.
    Another uphill battle!
     
  11. SOC

    SOC

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    It is, indeed! I had the best luck when both a hematologist and an immunologist wrote letters saying I definitely needed IVIG. The hematologist has a team (!) of people whose job it is to deal with insurance companies, so they had a lot of experience knowing what to say and how to fight insurance arguments.

    Even so, we had to wait until my overall IGG was below range, even though I had other deficiencies that should have been sufficient. It may be that since your overall IGG is well within range and your subclasses deficiencies are still relatively small, you might have to wait a bit longer before your insurance company will be willing to pay for IVIG. :( However, if you're like me, that may only be another 6 months. You might want to make sure you get retested every 3-6 months. It was my impression that evidence of continued decline (as opposed to a single low measurement) strengthened the argument for IVIG. And maybe get tested later in the day if @Rlman is right and IGG is highest in the morning. ;)
     

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