How to rule out an autoimmune process ?

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.
 

drob31

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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.
 

junkcrap50

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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?
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.
 

ebethc

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

Gingergrrl

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

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?
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.

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.
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.

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.
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.
 

kangaSue

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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.
 

Markus83

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

Gingergrrl

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

Pink

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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

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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.)
I've been following some of your recent threads. How are you doing lately?
 

Daffodil

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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
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.
 

Thinktank

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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....)