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!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Multiple cytokine tests, different results. Any thoughts?

Discussion in 'Immunological' started by SOC, Jul 3, 2013.

  1. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    I finally got hard copies of my last immune tests. I now have data for three points in time and somewhat different conditions. The results are definitely different. I'll talk to Dr R about this when I see her in Sep, but there wasn't anything in these results she was overly concerned about at the time. So, just a puzzle, at this point, more than a concern. I'd appreciate any thoughts on this data.

    Conditions:
    3/26/12 First ever immune tests. I was still on Valcyte. Had been taking supposedly immune modulating supplements, but not within 4-6 weeks of the test. Blood drawn in Miami.

    12//10/12 Next visit to Dr R. Had not taken an immune modulating supps (as far as I knew) except Equilibrant in nearly a year. Blood was drawn before I saw dr. When I told her I had had surgery 2 weeks before, she said that immune tests would be distorted by that, so shouldn't be done then -- we should wait another 6 weeks. :mad: However, the tests were run by accident anyway.

    1/22/13 Because I had gone down to Miami for practically no reason and it seemed crazy to make me come back in only 6 weeks just for the testing, they gave me extra super special dispensation to have the blood drawn at home and sent to the U Miami Lab. (I do not recommend this. It took 3 phone calls to the phlebotomy services admin and 3 trips (2 failures) to the lab itself to get even the appearance of having it drawn and shipped properly for this very finicky testing -- and I still don't know if they did it right, just that the U Miami lab accepted it).

    Cytokine Data
    The cytokine data comes in pg/ml along with std dev and error, mean, median, percentile bin. The percentile bin is the simplest for quick looks. I've remarked the bins as follows to make it easy to read:
    1: below 10% -- very low
    2: 10-25% -- low
    3: 25-50% -- normal/okay
    4: 50-75% -- normal/okay
    5: 75-90% -- high
    6: above 90% -- very high
    for my own information I added another group
    0: my measure was 0 pg/ml :eek: (or maybe that's good :angel:)

    In the table below, orange is out-of-range low data, red is out-of-range high data
    The first 6 cytokines are labeled "Proinflammatory"
    The middle 6 are labeled "Th1/IL-8"
    The bottom 6 are labeled "Th2/Th17/Anti-inflammatory

    ETA: Oh crud, my pretty compact table failed. :( If anybody knows how to fix it, let me know.

    Cytonkine
    3/26/12
    12/10/12 post surgery
    1/22/13
    TNF a
    3
    4
    3
    LTa(TNFb)
    2
    4
    6
    IL1a
    4
    3
    4
    IL1b
    5
    3
    6
    IL6
    4
    4
    4
    TNFRI
    2
    4
    6
    IFNg
    3
    2
    3
    IL12
    4
    6
    2
    1L2
    3
    2
    0
    1L15
    3
    5
    6
    1L8
    3
    2
    4
    TNFRII
    3
    3
    6
    IL4
    4
    4
    3
    IL5
    4
    1
    4
    IL17
    2
    2
    0
    IL23
    1
    2
    1
    IL10
    5
    1
    0
    IL13
    4
    5
    3

    The first set doesn't look too bad. Inflammatory cytokines were certainly not high except for IL-1 beta, and anti-inflammatory cytokines were normal to high. Something looks pretty flaky in the Th-17 arena, though, with IL-17 and IL-23 quite low.

    The post-surgery cytokines are, expectedly, different. Pro-inflammatory modulated into the normal range -- probably good after surgery. The Th-1 cytokines went bonkers in different directions, but that might be normal post-surgery, I dunno. The Th-2/Th-17 cytokines tanked, which doesn't seem like a good thing, but whadda I know?

    The 3rd set is the most interesting. My immune system should be back to normal after the stress of surgery 10-12 weeks before. Should be. It looks awfully wacky to me.

    General notes from the report says "Elevated TNF RI and TNF RII suggest a chronic TNF-alpha elevation" o_O TNF RI and TNF RII very high (check), but TNF-alpha has been reliably normal. Go figure.

    LTalpha (TNFbeta) and TNF RI went from low to very high over 10 months. IL-10, OTOH, went from high to non-existent in the same time period. o_O IL-2 and IL-17 also went non-existent. :eek:

    The whole Th-17 (IL-17 and IL-23) thing doesn't look too good across the board -- definitely running low to very low. From the general notes, "Lowered Th-17 levels may leave the host susceptible to opportunistic infections." No big surprise there, I suppose.

    I'm off to dig around about cytokine info -- functions, reasons for abnormalities. I'd appreciate any info or just comments on this data.:)

    Further news on the immune cell and pathogen data in another post, should anyone be a data geek like me and interested in such things.

    Thanks!
    svetoslav80 likes this.
  2. PhoenixBurger

    PhoenixBurger Senior Member

    Messages:
    174
    Likes:
    123
    Did Rey re-run your same cytokine test? Thats like $3,000 each time right? :ill:
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    Test was run twice within 2 months. Don't know if the lab charged for it, or if insurance company objected or paid. I certainly wasn't out $6000 in 2 months. :)
    svetoslav80 and Valentijn like this.
  4. svetoslav80

    svetoslav80 Senior Member

    Messages:
    484
    Likes:
    149
    Bulgaria
    Thank you very much for sharing this. I was just about to start a topic about cytokines where everyone could post their cytokine test results, and maybe we can find a common cytokine that's elevated in all of us and use as a diagnostic test. However, as I understand, these tests are very expensive, and only a few people are doing them.

    p.s. I can't understand why so little people are interested in this topic. Maybe the cytokines are the key to putting definite diagnosis for PWC and other fatigue disorders.
  5. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    Yes, the testing is very expensive -- into the thousands of dollars for the whole shebang. Fortunately, my insurance pays a large part of that. Still, with 2 of us getting immune tests, it's a noticeable out of pocket expense.

    It seems to me that comparing immune data should be helpful. I'm willing to share mine and my daughter's if someone wants to put together some kind of structure to handle the large amount of data.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,150
    Likes:
    4,408
    australia (brisbane)
    do they offer any type of anti inflammatory treatment for the elevated inflammatory cytokines, something like enbrel for elevated TNF etc??
  7. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    No, my inflammatory cytokines are not really high overall. As I understand it, enbrel is a TNF-alpha inhibitor (although I could be wrong), and my TNF-alpha has been reliably normal.

    For me, it's the Th-17 stuff (IL-10, IL-17, IL-23) that's the real mess. Apparently there's nothing to do about that. :(
  8. lnester7

    lnester7 Seven

    Messages:
    1,190
    Likes:
    1,065
    USA
    SOC i have read IL-17 and IL-23 related tio leaky gut (that is who I knew that was not my issue) Google IL-17 and leaky gut togurther and same w IL-23.
  9. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    If it's not one thing, it's another, eh? :rolleyes: I never figured leaky gut was my problem... but then I didn't think I had active viruses (wrong) or OI (wrong), so having leaky gut would fit right in with my pattern.

    Thanks for the info. I'll go look it up.

    ETA: It looks like leaky gut is associated with higher IL-17. My IL-17 and IL-23 are quite low. So maybe I did actually dodge that bullet. ;)
    lnester7 likes this.
  10. madietodd

    madietodd Senior Member

    Messages:
    2,424
    Likes:
    1,603
    East Coast, USA
    SOC, did you find any useful links? I had this test done last September, and Dr. Rey never talked about my results. I just got a copy, and the brief story is:

    TNFa normal, LTa very low, IL1a low, IL1b low, IL6 normal, TNF RI so high there's no reading.
    IFNy low, IL12 very high at 12.53, IL2 normal, IL15 very low, IL8 and TNF RIso high there's no reading.
    IL4 low, IL5 high, IL17 high, IL23 high, IL10 very low, IL13 normal.

    I imagine I want the proinflammatory reading low, and the anti- ones high. Can you (anybody?) guide me to any links that will help me understand this?

    I didn't get any treatment or ideas, other than that I had to get rid of Lyme, from Dr. Rey. I'm trying to decide whether or not to go back at the end of October.
  11. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    madietodd, I can't say I found any really useful links. I see Dr Rey in a couple of weeks, so I'll have a chance to get more information about my cytokine reports then.

    I have the low IL-17 and IL-2 (although normal IL-8) that Dr Lipkin mentioned as common in long-term ME/CFS. Interestingly, your IL-8 and IL-17 are high. Do you know what the cytokine profile for Lyme is? Perhaps your cytokine profile is typical of chronic Lyme...? Monitoring cytokines during treatment might provide knowledge about how well the treatment is working.

    You, I, and my daughter all have normal IL-6. Isn't that the one that if it's high one could benefit from therapy to reduce stress according to a recent paper by Klimas et al? Looks like we're good there -- no stress therapy for us. ;)

    You and I have very different cytokine profiles. In most cases where I'm high, you're low, and vice versa. o_O No wonder there's not a known consistent pattern to cytokines in ME/CFS. What we do have in common are very high TNFRI and TNFRII which (according to my cytokine report) suggests chronic TNFalpha elevation. But neither of us has elevated TNFalpha. o_O We both have low IL-10, which is an anti-inflammatory cytokine.

    Isn't treating Lyme a reasonable treatment plan for you? Did you have other treatment or ideas you thought Dr R should have addressed?
  12. madietodd

    madietodd Senior Member

    Messages:
    2,424
    Likes:
    1,603
    East Coast, USA
    I fell down a rabbit hole re lyme. First off, the testing isn't reliable. Second off, 'they' say that once you treat it, you can't just re-test to see if it's gone, because you continue to test positive for.....I forget how long. And of course that testing is also not reliable. So I just took doxycycline for 2 months, didn't notice any difference in any direction, and gave up.
    I did go to an infectious diseases doctor locally who told me I'm not sick and I should see a therapist. So I really don't know what I want to do next. The trip to Florida would be expensive and difficult, though my insurance will pay for most of the medical costs. But the last trip was sort of a waste, other than getting tested and discovering that my infection titers aren't particularly high.

    Dr. Rey just said I had to treat the Lyme before anything else, and then we would retest because with Lyme gone the numbers would be different. I guess I wish she knew something about Lyme, and that she'd explained what my other test results indicated.
  13. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    Everything I hear says that 2 months of abx is not enough to see a substantial improvement with Lyme, so that might explain why you didn't see a difference in that time. Lyme is a tough bugger!

    Your cytokine abnormalities could be the consequence of Lyme infection, so it makes sense that Dr R says to treat Lyme first. I wonder if it makes any sense to go down to FL if you haven't been doing a treatment that will change your immune data. They'll take your blood, run the expensive immune tests, but nothing will be changed, so why bother?

    You do know that by law Dr R can't treat you, including write prescriptions, if you don't see her at least once a year. So if you want to continue to be treated by Dr R, you'll have to go down there even if you don't have the immune tests done.
  14. madietodd

    madietodd Senior Member

    Messages:
    2,424
    Likes:
    1,603
    East Coast, USA
    Yes. Since I got no treatment from her, that's not a problem!

    Thanks for your input. I'll figure it out......
  15. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA

    Sure isn't! :D

    So she wasn't treating you for Lyme? Did she refer you to a LLMD?
  16. madietodd

    madietodd Senior Member

    Messages:
    2,424
    Likes:
    1,603
    East Coast, USA
    She said that there's no Lyme in Miami (!) so she knew nothing about it, and she didn't know any doctors. I couldn't find an authentic LLMD anywhere close to me. I found one who sounded very flaky, and one excellent one who had stopped seeing patients.
    I had asked for the Lyme test, thinking (erroneously) that she might have access to really good Lyme testing. I don't think we've got anything in the US yet like what KdM does. And Brussels is definitely harder and more expensive than Floria :cool:.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,613
    Likes:
    5,405
    Albuquerque
    Most of the same tests are available in the US--I think I just read that even the LTT Elispot is available here. Don't remember which labs though. Someone else will remember.

    Best,
    Sushi
  18. madietodd

    madietodd Senior Member

    Messages:
    2,424
    Likes:
    1,603
    East Coast, USA
    I'm seeing my doctor tomorrow - I'll ask him if he knows of any excellent tests. Thanks.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,150
    Likes:
    4,408
    australia (brisbane)
    just smash the doxy and azithro for a couple of months, then do a week of flagyl each month while still on doxy/azithro for a further 6 months and reassess:thumbsup:
    Those the are antibiotics i ve used for lyme as well as cpn.
  20. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    Sounds like there isn't much she can do for you. :( Too bad you can't find a good LLMD. I'm thinking that your gut feeling that it's not worth it to you to see Dr R at the end of the month is a good one. Brussels might be a tough trip, but NV shouldn't be as bad. :)

See more popular forum discussions.

Share This Page