In depth autoimmune testing - what to ask for??

[Seadragon]

Hi all,

I recently got some more in depth immunological testing done by a specialist in London and the only things that came back positive were ANA as usual (no other evidence of Lupus though - anti DSNA normal, no physical manifestations of Lupus either) and Anti Smooth Muscle Antibody (but all other liver tests were normal which rules out Autoimmune Hepatitis).

Also "low functional antibodies to Pneumococcus" (I have no idea what this means though he wanted me to get the vaccine but I have so far refused as I react horribly to vaccines)

I really want him to do more in depth testing for autoimmunity but haven't got a clue what tests to ask for. Sed Rate (ESR) used to come back high but now normal, same with Rheumatoid Factor.

There must be more thorough testing to detect if there is autoimmunity going on in my case which I have suspected strongly for some time but as you can see I can't prove it yet.

Not sure if this is the right section of the board to post this?

Also if autoimmunity was indeed a factor (or a possibility) what immune modulators would be worth a try? I always feel better and more functional and in a lot less pain when I have a virus (it's like my immune system has something to focus on instead of attacking my CNS). I'm convinced if I could replicate this, I would be 50% or more better!

Love Esperanza x

 

[Xandoff]

Esperanza, I was in your position for years, seven to be exact. When you find a real ME CFS Doctor they will know what tests to run. Normal GP or General practice Docs know next to nothing about what tests to run or where to order them from. For seven years I tested normal for everything and I was very ill. If you check my profile page you might see some of the tests I had that were significant for me. Are you in the U.S.? There is a co-cure list that you can google or Bing for ME CFS Doctors. Find one. Good luck. Keep searching. I remember I had and sed rate test that was almost ZERO and my GP thought it was a fluke but this sometimes happens with ME CFS. Google ME CFS Co-Cure List.

 

[Seadragon]

Thanks for the reply Xandoff,

Unfortunately I have had all the tests for viruses and all were negative - only one showed past exposure (not active infection) with EBV.

Also all CD counts, C3 and C4 complements etc etc all normal.

We don't have ME/CFS docs in the UK - I am seeing an immunologist who doesn't know too much about these illnesses plus I am 24 years in to this illness and the more typical hallmark ME/CFS symptoms have been replaced with autoimmune type symptoms.

I'd appreciate any further input from people who have had this type of in depth autoimmune testing as I just don't know what else I can ask for test wise.

Can docs test for autoantibodies (apart from the obvious ANA etc), different complements, cytokines etc? That is the type of thing I was asking for info about.

Love Esperanza x

 

[mezombie]

Hi Esperanza,

Can you get a referral to a rheumatologist?

Lupus and less well-known autoimmune diseases are treated by rheumatologists in the US. These specialists also have training in immunology and a decent one should be able take the results you already have and dig deeper with additional appropriate testing.

There are a number of immune modulators on the market but I was told some years ago that one has to be careful as they can actually make someone with autoimmune disease worse.

 

[Rufous McKinney]

Here I am, visiting this thread (again) with no recollection of having ever seen it before. Donchalov the over boiling hippocampus?

Thought I'd share the following:

I recently got a biopsy on my left parotid which found low grade B cell lymphoma in a lymph gland. The Pet CAT scan showed action in some other areas, but they recommended no treatment at this time, to just Wait and Monitor.

I got alot more blood work done after years of not getting any. I then went to a rheumatologist who generally found I do not exhibit most of the rheumatological conditions they focus on. Lupus, scleroderma, and a few other things.

So my blood work mostly came back pretty normal, wiht a bit of Rheumatic Factor Activity, and a few other numbers slightly positive but nothing really huge or worth further pursuing.

Mostly I think I have Sjogrens symptoms but did not come back with positives there (which is to be expected as the tests aren't very good).

 

[SWAlexander]

Sjogren's symptoms.

Did you have an ANA test reg. Sjogren's? ANA test could determine if you have an autoimmune disorder.

My first visit and tests at Rheumatology turned out similar, - no significant results except vWD. Hematology however found APS and a pre-diagnosis for encephalitis. CT showed "something" but was not stipulated as encephalitis. Now, 3 years later, a final diagnosis revealed lupus, HSV1 and HSV2.

3 years have passed and I´m still waiting for an appointment with a virologist.

 

[Treeman]

I'm in the UK. My immunologist did some testing and found tpo and ana autoantibodies. However as I understand it, the NHS only tests for a few of the known 120 or so auto antibodies. I read if you have one, you will have others.

I also read an article by an auto antibodies expert and they stated that there could be up to 3000 auto antibodies with the vast majority still to be discovered.

It's not just ME/CFS that resides in the dark, many associated areas of medicine do too.

And even if we're able to identify any auto antibodies, what treatment is there for them?

I wish you good luck, but not sure what any of us can do.

I spent a couple of years resting and my auto antibodies disappeared. The immunologist said it was unheard of for them to resolve (mainly the tpo ones). It only made me marginally better.

 

[SWAlexander]

known 120 or so auto antibodies

You bring up a good point about the known and unknown ANA.

For systemic lupus erythematosus, Sjogren's syndrome, scleroderma or mixed connective tissue disease is no real “cure”. Symptoms (inflammation) are commonly treated with cortisol or methotrexate.
Both can create long-term problems, as I personally have experienced.

Science could widely use double-stranded DNA (dsDNA) for autoimmune disease discovery and diagnosis.
Methylated genes often create dsDNA. If these are discovered (like TB creates sometimes up to 3 dsDNA), science would be closer to a direct diagnosis.

I have improved very much since Covid hid me in late 2020 and RSV in 2022 in addition to ME/CFS. However, the skeletal muscle weakness I have had since childhood remains. I have no illusion that there will be a cure for PPS.

 

[SWAlexander]

Today I found this about Sjogren's.

12 Reasons People With Sjogren's Don't Get Diagnosed
https://www.sjogrensadvocate.com/post/12_reasons_why_not_diagnosed​