Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
Discuss the article on the Forums.

Simple test to check immune system function

Discussion in 'General ME/CFS Discussion' started by SK2018, Jul 4, 2018.

  1. SK2018

    SK2018 SK

    Messages:
    239
    Likes:
    845
    Asia wide + UK
    Some members here have wondered if they have underlying immunological abnormalities,there is a reasonably simple to perform test that can be done to look for such though.

    How to find out if you have some immunological issues with your immune cells then ? including B, NK and T cells ect ? ...

    Asking for a FACS test of the CSF (for those with many neuro symptoms) is one way but you can also ask for a serum FACS test to test "lymphocyte subsets" such as T cells ,B cells CD3,CD8 ,CD4 ,CD19 ect and look out for HLA DR+ T cells "Human Leucocyte Antigen" positive T cells normal ratio is between and about 5-7% HLA DR+ means "activated" T cells and if you have a high number of HLA DR+ T cells like 12-35% they are fighting something and with "chronic activation" they may be fighting a self antigen in others words "you", also this test should be able to show any areas that are lacking (immune difiency)

    Also IMO testing levels of IL 6 and various other cytokines (full cytokine panel) can be useful.My facs test showed problems anyway.

    Just a thought....

    MORE INFO
    https://www.antibodies-online.com/resources/17/1247/what-is-flow-cytometry-facs-analysis/
     
    Mary, crypt0cu1t, Lalia and 5 others like this.
  2. Wishful

    Wishful Senior Member

    Messages:
    935
    Likes:
    1,329
    The problem is getting a proper interpretation of what the numbers mean. My cytokine panel showed half a dozen elevated or slightly elevated cytokines. The immunologist said something like: 'There's something going on, but I'm not familiar with the pattern, so I can't help you.' I suppose you could get lucky and the tests would show a clear failure that is understood and can be treated. I think that might more likely be a case of having an immune disorder in addition to ME/CFS. It's possible that treatments for viral response or autoimmune response might reduce the severity of some symptoms in some patients, but I don't get the impression that it's going to make a significant difference for teh majority of ME/CFS patients. If treatments for immune disorders were effective for us, I think we'd hear more than just a few anecdotal reports of success.
     
    Mary and alkt like this.
  3. Sundancer

    Sundancer Senior Member

    Messages:
    529
    Likes:
    1,239
    Holland
    I can ask all i like but would not get it.
    Even the simplest things like thyroid testing need some discussing.

    But I know that my immune-system is off...no need for testing, my body tells me clear enough,
    and as long as there is no cure for that... I'll struggle along with curcumin and elderberry,
     
    Mary, adambeyoncelowe and alkt like this.
  4. Wolfcub

    Wolfcub Senior Member

    Messages:
    546
    Likes:
    1,234
    SW UK
    I find this interesting. But I can just imagine what the NHS and my GP will make of it...."Oh you've been internetting again?" wonder if this kind of testing would need to be done privately or if NHS would do it...but if you don't ask, you don't get. I would definitely get some info at least from the test, I think. Because in my case I have no other medical history or issues going on etc. So my results may be clearer than they might be for some people.
     
  5. SK2018

    SK2018 SK

    Messages:
    239
    Likes:
    845
    Asia wide + UK
    I did it privately.
    d it
     
    alkt likes this.
  6. Sundancer

    Sundancer Senior Member

    Messages:
    529
    Likes:
    1,239
    Holland
    I would like to have mitochondrial tests and cytokines tested. Won't happen of course....
    that would be proof that I'm ill, that's all what I want realy, objective something that proves that I'm ill.

    I do not have a medical history either ( except for gutproblems that is, but those were " all in my head" I do have a history of severe depression though, I find that makes it even harder to be taken serious...)

    Oh but you are depressed, well, I'm not ( happily) and I now damn well how that feels so when i say I'm not, I would much like to be believed.
     
    Mary, Forçe e Honra, alkt and 2 others like this.
  7. SK2018

    SK2018 SK

    Messages:
    239
    Likes:
    845
    Asia wide + UK
    The way I look at it is any markers we find guide treatment choices better even if it's just us "experimenting" ,I mean If cytokines are all up then there are things that can suppress that both pharma and herbal ect ,it's better than going in totally blind anyway.

    heyb
     
    Mary, Forçe e Honra and Learner1 like this.
  8. Wolfcub

    Wolfcub Senior Member

    Messages:
    546
    Likes:
    1,234
    SW UK
    @SK2018 Where did you get the test done? And how much did it cost?
     
    alkt likes this.
  9. SK2018

    SK2018 SK

    Messages:
    239
    Likes:
    845
    Asia wide + UK
    The National Hurt Service likes to fob people off ,it's cheaper to send people with rare illnesse to shrinks.

     
    Forçe e Honra, alkt and Sundancer like this.
  10. SK2018

    SK2018 SK

    Messages:
    239
    Likes:
    845
    Asia wide + UK
    My FACS (flow cytometry) was done in Europe ,but I also had one done in uk via Bupa ,was about 200 quid for the test a neuro or immunologist ,oncologist can order it.

     
    alkt and Wolfcub like this.
  11. Wolfcub

    Wolfcub Senior Member

    Messages:
    546
    Likes:
    1,234
    SW UK
    Yes those tests would be great if you could find a way to get them.

    There IS a physical cause to CFS. I know there is. But what. We have yet to fully understand. Meanwhile people like you and others get shoved aside in a way and prescribed SSRIs or some other drug because the medical profession are stumped.
    And I challenge anyone to not get depressed, downhearted, or at least some mood changes after being physically unwell with no answers for (as in many cases) a long time. It wears down our spirits and our energy.
     
    Mary, alkt and Sundancer like this.
  12. Wolfcub

    Wolfcub Senior Member

    Messages:
    546
    Likes:
    1,234
    SW UK
    Thanks. £200 is not too bad for a thing like that which may help define a problem quickly. Bupa is a thought for sure. I am due to see a neurologist (NHS) in Sept. But I could get the test done privately anyway perhaps.
     
    alkt likes this.
  13. Sundancer

    Sundancer Senior Member

    Messages:
    529
    Likes:
    1,239
    Holland
    I'm dutch, but is same here
    of course there is, but as long as the narrative doesn't change we indeed get shoved off. Thats the reason I should like cytokines and mito's tested. then you have not an answer on why its off, but you do have a clear result why you cannot " come of your butt"

    I do not do any medication, makes me ill. And even though doctor don't believe that, I've known for a long time.

    also get shoved off as " she's not right in the head" My GP does not say that exactly, but I do hear him thinking that.
     
    Mary, alkt and geraldt52 like this.
  14. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,151
    Likes:
    5,395
    Pacific Northwest
    MitoSwab in Pennsylvania can test mito function for US$300.
     
    Mary, alkt, Marley101 and 1 other person like this.
  15. Sundancer

    Sundancer Senior Member

    Messages:
    529
    Likes:
    1,239
    Holland
    alkt likes this.
  16. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,151
    Likes:
    5,395
    Pacific Northwest
    You do need a doctor to order the test. Then, you can do the test at home and ship it to Pennsylvania. Geographically, I shipped mine as far as you would... I've had blood shipped to the UK and Germany, so it's not too difficult.

    They sent a 3 page report, which was quite helpful.

    And, since then, I've been able to piece together some answers for the results. A nitrotyrosine test from HDRI was helpful, too. You have an expert in your country...
     

    Attached Files:

    alkt and Sundancer like this.
  17. Sundancer

    Sundancer Senior Member

    Messages:
    529
    Likes:
    1,239
    Holland
    I have an expert in my country?? could you unveil that for me?

    Next week I go see Dr Visser, first specialist ( cardio) in many years, I hope he'll objectify my OI plus I think I do have real heartproblems ( apart from the ME anomalies I mean)

    I had a test for nitrosative stress some...err more then a year ago, it was OK. I can feel that it has lessened enormously compared with 3 years ago. Thanks to sups I still take, the methylcobalamine is a big help too, should have started that much earlier, but did not know.

    It is so painful that much knowledge is there ( here I mean, on PR) but that I did not know and was too sick to hunt for it)

    reading a paper like you added, takes enormous toll on me still, cognitive exertion is as bad as physical and my brain just does not want to work like it was in those better days.
     
    alkt likes this.
  18. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,151
    Likes:
    5,395
    Pacific Northwest
    I find reading papers to be worth the effort. Or perhaps you csn just look up the author, who lives in your country.
     
    Sundancer likes this.
  19. Wolfcub

    Wolfcub Senior Member

    Messages:
    546
    Likes:
    1,234
    SW UK
    I can't manage doctors' medication either without horrible effects and I never could even when I was well. I am lucky to be able to tolerate Ibuprofen and amoxycillin and they are about the only two "drugs" I can handle. I use herbal medicines instead . The two above were only ever used for 1) any intense pain , and 2) for tooth abscesses which nothing else will reach.
    Like you I am so sensitive to medications and always have been. I was lucky before. I was fit and rarely needed them.

    But even herbal medicines haven't helped me at all these last few months.
     
    Sundancer likes this.
  20. Sundancer

    Sundancer Senior Member

    Messages:
    529
    Likes:
    1,239
    Holland
    yes I find it worthwhile too, but only on days I'm up to it. I'm very slowly recovering from a viral intruder which has thrown me back almost to the pit.

    Dr Maes is not in Holland anymore, his work was not valued, he was laughed at by his colleagues as a quack and i think he's currently doing research in Australia. I do have a book from him though which I've read with much interest
     

See more popular forum discussions.

Share This Page