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Immunologist

Discussion in 'General ME/CFS Discussion' started by Katyw, Jun 15, 2014.

  1. Katyw

    Katyw

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    Hi everyone

    I've managed to get an appointment to see an immunologist, and the appointment is on Tuesday. Just wondering if any of you have got any advice on things I should ask to be tested and/or things I should bring up?

    I'm not holding out much hope as there isn't any treatment in the UK for ME but hoping that if the immunologist digs deeper there might be something she can help with.

    Thanks
    K
     
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  2. Valentijn

    Valentijn Activity Level: 3

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    IL-8 is one that often turns up high in ME patients, if you're interested in having some verification of abnormality, even though it doesn't really specify the cause of the problem. Being post-exertional might help in getting a high result.
     
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  3. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @Ema will know. NK Cell Function is one.
     
  4. SOC

    SOC Senior Member

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    Low CD-8+ cell number is also found more commonly in PWME than the general population. You might want to have her check Th-17 cytonkines -- IL-17, IL-23, maybe others.
     
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  5. Raindrop

    Raindrop Senior Member

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    Most Immunologists don't "get it", but worth going anyway. I am not sure what your
    specific goals for the apt are. However, I would definitely have the doctor run the
    IGg, IgA, IgE,IgM Immunoglobulin panel. She did this for me after year and years of very abnormal
    HIGH iGg and a very serious problem was found. A very very high score, as well as
    very lows (mine had both), can reflect other diseases.
     
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  6. Katyw

    Katyw

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    Thanks for everyone's replies

    @Valentijn could you clarify what IL-8 is testing?

    @SOC I've had some immunophenotyping done as was tested for T-LGL but that was negative. The report says CD4:CD8=2.7 does that mean anything to you?

    @Raindrop I will definitely ask for those-my GP is clueless and has referred me as I have constantly abnormal blood work. I know that there's not much immunologists will to to help PWME Personally I think I need to see a virologist but hoping they might find something that could be treated.

    For everyone- I have heard some people taking about taking medicine that regulates the immune system (eg immunoglobulins) Is this worth asking about?
     
    Last edited: Jun 15, 2014
  7. Misfit Toy

    Misfit Toy Senior Member

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    I had lymphocyte testing and found out I have idiopathic lymphopenia. It took 2 immunologists to give me that diagnosis. I don't make WBC. Also, Ema may have mentioned, but for CVID. Or, the subclasses of igg, iga, igm. They are really important.
     
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  8. Ema

    Ema Senior Member

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    I would start with a regular old CBC with differential, IgG (total and subclasses), IgA and IgM.

    You could also get a Lymphocyte Proliferation Panel and a NK cell function test as well.
     
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  9. Ema

    Ema Senior Member

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    Also this is interesting from Mayo Labs:

    http://www.mayomedicallaboratories.com/test-catalog/Overview/60593
     
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  10. SOC

    SOC Senior Member

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    Not Valentijn, but since I had the info on the immune test results I was looking at to answer your next question, I figured I might as well chime in. :D According to my results paper:
    As far as I can tell, there's quite a variety in what's considered a normal CD4/CD8 ratio. Mostly it's measured because of concern about low CD4 in HIV, so they're more concerned about low ratio due to low CD4 and don't pay much attention to high ratios. This source says
    A ratio like CD4/CD8 is only meaningful if you know something about the individual components. For example, your CD4/CD8 is a little high. That could be because your CD4 is high, or your CD8 is low, or both. You could also have a very low CD8 with a normal CD4/CD8 if your CD4 was also low. Confusing, isn't it? The medical community got into reporting the ratio because it's important in HIV where it is known that CD4 cells are being destroyed and it is "known"(assumed) that CD8 numbers are normal. It's not so useful for the rest of us.

    My CD4 numbers are normal, but my CD8 is low. My CD4/CD8 ratio is 4.8. It has been as high as 6.3.

    Medications and supplements that regulate the immune system do so in a number of different ways. Until you know what is wrong with your immune system, you won't know what medications or supplements would be appropriate or safe for your condition. There's little point in asking an immunologist for meds until s/he has detected an abnormality for which a particular med is appropriate.
     
    Last edited: Jun 16, 2014
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  11. ukxmrv

    ukxmrv Senior Member

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    Most of the tests mentioned here are not available to UK NHS patients and even private Immunologists may not be using a lab that offers these tests sadly. I've had some correspondence with my PCT in London that covered testing through the hospitals here. It's not good.

    @Katyw, are you seeing a private or NHS immunologist and do you know if they have any experience in CFS and ME?
     
  12. Katyw

    Katyw

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    @Ema thanks-I will definitely ask what you've suggested

    @SOC thanks do much for all that info- very helpful.

    @ukxmrv yes, sadly I thought that might be the case! It is an immunologist on the NHS, and I don't know if they have any experience in ME, I didn't get much choice in my referral! My blood work has shown a constant chronic infection for over 10 months now (GP thinks viral) so he's referred me. I think I need to see a virologist. I'm hoping then can at least look further into things.
     
  13. ukxmrv

    ukxmrv Senior Member

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    Katyw, there are some interested NHS immunologists out there but it is a postcode lottery. Hope you get to see one of the good guys. They may run some tests to see if you have a virus infection that they recognise. There are some who will go a little further as well. Please let us know how you get on.
     
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  14. Allyson

    Allyson *****

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    yes they are on e different plain alas often - you could get them to look into any allergies you may have ..hives, asthma excema etc...and food intolerances.
    You could ask about POTS but it is not really their area - MCAD is though so you could ask about that too if you have any itching etc
    GOod luck

    ALlh
     

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