Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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How to rule out an autoimmune process ?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Markus83, Jun 21, 2018.

  1. Markus83

    Markus83

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    How can I rule out an ongoing autoimmune process? I know that there are many autoantibodies which can be tested, but I'm asking myself if an autoimmune process should show up in other tests aswell, e.g. T-cell differentiation?

    It seems that the rheumatologists just measure ANA, ANCA, RF, Anti-CCP and if they are ok, then you don't have any autoimmune disease. But how safe are these screening tests?

    What would make sense to be tested for? I'm trying to get IVIG covered by my insurance, and I think high autoantibody titers would be a good thing to argue for IVIG.
     
  2. drob31

    drob31 Senior Member

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    I think it's impossible to rule out.

    People can be seronegative and not produce antibodies that are detectable for years. Or, never produce antibodies.

    Symptoms > lab results.

    So a symptomatic pattern that matches a condition is more important than what the lab work says.
     
    crypt0cu1t, Thinktank and alkt like this.
  3. junkcrap50

    junkcrap50 Senior Member

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    These tests aren't sensitive enough to catch autoimmune disease before it's already a pathology with organ/end result destruction. drbo13 is correct in that you can be seronegative and not produce antibodies that are detectable for years.

    There are a few specialty labs (Cyrex, Celltrend, others here) that have more sensitive serology, but their tests are probably not recognized by insurance companies or mainstream doctors.

    If you are trying to get IVIG approval, you will need positive standard rheumatology tests. Whoever the doctor prescribing IVIG will know what is needed for insurance company approval.
     
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  4. ebethc

    ebethc Senior Member

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    I thought IVIG was based on low IG + subclasses.. no?
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    I don't know if you can ever rule it out b/c there are endless autoantibodies that someone could have.

    It is definitely not accurate that those tests alone would rule out an autoimmune disease. I believe all of those tests would be safe (they are just blood tests) but I don't know if they are always accurate, especially a single ANA test. The moment I was diagnosed with Hashimoto's Disease (autoimmune thyroid), I was told it was the gateway to other autoimmune diseases and nothing could have been more true (in my case). So I would consider testing thyroid and all of the basics as a starting point and then testing the more obscure.

    It seems that the only "sure thing" to get IVIG covered by insurance is if you have CVID or chronic immune deficiency (which I do not). I got it approved for autoimmunity but it has been a non-stop battle for two years that I am still dealing with today.

    Those tests alone are not recognized but if you have other tests (from Mayo Clinic for example) then you can show additional tests like Cell Trend to bolster your case with insurance.
     
  6. kangaSue

    kangaSue Senior Member

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    Deciding what to test for is generally determined by the symptoms that one has but the connective tissue disorders are fairly common disorders that should be checked for with an ENA panel.

    Autonomic dysfunction features strongly in many autoimmune conditions too so something like the Mayo DYS1 panel (Autoimmune Dysautonomia) covers a lot of bases.

    GAD65 antibody is another quite prevalent thing.
     
    Malea likes this.
  7. junkcrap50

    junkcrap50 Senior Member

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    You're correct. I had a lapse in thinking.
     
  8. Markus83

    Markus83

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    There are several other indications which qualifiy for IVIG besides CVID, e.g. some special neurological autoimmune disorders.

    My understanding of the law at least in Germany is that even a Trial&Error therapy has to be covered by the insurance if you have a severe disease for which no other treatment exists. But it's hard to get it through, you probably have to go to the courts and this might take years with an uncertain outcome.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    This is definitely true and there are many autoimmune conditions that respond well to IVIG (separate from the issue of getting insurance approval). Some are Myasthenia Gravis, Guillain-Barre and CIDP, Stiff Person Syndrome, MS, LEMS, dermatomyositis and polymyositis, vasculitis, and these are just off the top of my head. It can also be used with Autoimmune POTS and MCAS (even though insurance has not caught up to this yet).
     
    Learner1 likes this.
  10. Pink

    Pink Senior Member

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    Who tests for autoimmune diseases and what blood tests would they be? My primary care dr hasn't; I'm not sure if the cfs specialist did . She ordered pages of tests and I dont know what they all are . (Spent a fortune on a follow up call after the blood tests and I'm none the wiser.)
     
    mrquasar likes this.
  11. Daffodil

    Daffodil Senior Member

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    CFS/ME is an autoimmune disease
     
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  12. mrquasar

    mrquasar Senior Member

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    I've been following some of your recent threads. How are you doing lately?
     
    Pink likes this.
  13. Pink

    Pink Senior Member

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    Thank u for asking @mrquasar
    Not well sadly.
    Frustrated by drs who brush me off or send me for dozens of blood tests w not much result other than more tests and more vitamins.
     
  14. ebethc

    ebethc Senior Member

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    how do you know that?
     
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  15. Daffodil

    Daffodil Senior Member

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    I talk to researchers.
     
  16. ebethc

    ebethc Senior Member

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    can you share anything more, like research or specific tests? I've never tested positive for any AI disease, but maybe I'm not being given the right tests
     
    scienceshea likes this.
  17. Daffodil

    Daffodil Senior Member

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    demeirleir is the researcher most ahead with this disease and he had a paper out..i think it was called "from infection to autoimmunity" or something. also rituxan helps some people...that is also used for autoimmune diseases.

    there are new treatments on the horizon. I am hoping this will all be over in a couple of years. Its hard to hope after 25 yrs of this but......they are getting close. Not necessarily to the root cause - I am not sure they will figure that out in our lifetime - but to effective treatment.
     
    ebethc likes this.
  18. Thinktank

    Thinktank Senior Member

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    To my knowledge KDM has always dismissed ME/cfs to be autoimmune of nature.
    Did he change his mind? (That wouldn't be the first time....)
     
  19. Neunistiva

    Neunistiva Senior Member

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    Just one of the possibilities. Still hasn't been proven. Don't mislead people.
     
  20. Daffodil

    Daffodil Senior Member

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    what do you mean he dismissed it?
     

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