How to rule out an autoimmune process ?

[pogoman]

I thought I should check in at the two week mark after rituximab, I hope everyone is doing well.
My symptoms are slowly improving.

Sleep improved almost immediately, I think from the nightly flexeril being more effective to the point I just started taking only half a pill before sleep.
The last few days before doing this I was very groggy in the morning which was unpleasant

I was also able to in the second week to go without the mid sleep pain meds, conversely this made the waking pain and muscle stiffness worse.

But in the whole, definitely improvement

 

[Gingergrrl]

I thought I should check in at the two week mark after rituximab, I hope everyone is doing well. My symptoms are slowly improving.

That is great news and thanks for updating us. I hope your improvements continue and get even better!

 

[pogoman]

Thank you!
I see the neuro in two weeks so maybe I will find out more then.
So far its like a small percentage of the symptoms get better, can't really notice day to day but after a few days have passed I can tell I feel better.
This despite the hot temps and humidity this month, normally its unpleasant for a month til I get used to it but I'm doing much better handling it.

Just random thinking about all the different things like vitamins, amino acids and protein I've tried over the years, the ones that worked would last a month or two at first and more recently last only weeks and days before symptoms came back.
I wonder if if the supplements were also strengthening my immune system to the point where it got triggered and started attacking my body again.

 

[Pearshaped]

i was wondering if someone could give an opinion with to the following:
years BEFORE me/cfs my ANAs were 1:1280(test was repeated 4x to make sure its not an error).
back then,my only symptom fatigue and achy here +there.but lived a normal very active Life.
Since onset of ilness ANAs only 1:160..
does that mean anything?

 

[kangaSue]

i was wondering if someone could give an opinion with to the following:
years BEFORE me/cfs my ANAs were 1:1280(test was repeated 4x to make sure its not an error).
back then,my only symptom fatigue and achy here +there.but lived a normal very active Life.
Since onset of ilness ANAs only 1:160..
does that mean anything?

It always means something and ANA of 1:160 is a positive result for a possible autoimmune condition but sometimes it's just an indication of inflammation.
Getting up as high as 1:1280 could mean waxing and waning Lupus symptoms but then again, if the high (ANA) number was accompanied by a dense fine speckled (DFS) pattern, it is probably due to an inflammation cause that's not likely to be an autoimmune antinuclear antibody (ANA)-associated rheumatic disease. Apparently though, some clinicians can't always pick a DFS pattern.
Have you had an ENA panel done to rule out Lupus or the other connective tissue disorders?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939145/

 

[Pearshaped]

I've never heard of ENA panel and don't know about the DFS pattern either.
They probably haven't checked that.

one time they told me i have a connective tissue disorder (they didn't know what kind) but because pain was not my main problem (and still isn't) diagnosis was dropped.
Thank you for that info @kangaSue
i know now what kind of blood work i want to ask for next time.

 

[men100]

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.

Hi, do you know if there is a way I can do the Mayo Clinic panel from Spain? I have contacted them but they have told me that I have to go in person to do it. It is a very long and expensive trip, I don't know if they understood me well.

 

[kangaSue]

Hi, do you know if there is a way I can do the Mayo Clinic panel from Spain? I have contacted them but they have told me that I have to go in person to do it. It is a very long and expensive trip, I don't know if they understood me well.

Mayo is an international referral centre for the testing of antibodies but maybe they only deal direct with other medical institute referrals outside of America. I do know that they will accept blood samples for testing from within America without the need to be seen personally.

You should be able to get most of the tests from Mayo's panel done locally in Spain I would have thought though. The AChR Ganglionic Neuronal antibody is the only exception to that and which only a few centres worldwide are said to be able to do this test well.

If not, Oxford University in the U.K is also an international antibody testing referral centre, the Immunology Laboratory at the Churchill Hospital, Headington, Oxford, that should be able to do all the tests in the Mayo panel including the AChR Ganglionic Neuronal antibody test (Serum a3 ganglionic receptor, by RIA) but it looks like you have to request the tests individually rather than them being offered in a panel.
https://www.ouh.nhs.uk/immunology/diagnostic-tests/neuroimmunology.aspx

 

[Gingergrrl]

I do know that they will accept blood samples for testing from within America without the need to be seen personally.

This is definitely correct and I have done several Mayo Panels that were sent to Mayo's Lab but I have never been there in person. I did panels at Stanford and at Quest that were sent to Mayo.

 

[Hipsman]

There's a sort of belief in my local cfs chat that Serum Protein Electrophoresis test can rule out autoimmity, but this is false right? Please share more info on this if you can...

 

[Gingergrrl]

There's a sort of belief in my local cfs chat that Serum Protein Electrophoresis test can rule out autoimmity, but this is false right? Please share more info on this if you can...

@Hipsman Someone more sciencey than me can explain this better but about 1.5 yrs ago my doctor ordered protein electrophoresis testing for me (serum & urine) b/c I had consistently elevated IGM for many years. He wanted to rule out MGUS or even cancer. All the tests came back negative so he felt that my elevated IGM was due to autoimmunity. Eventually, my IGM dropped down into the normal range. I had not heard of Serum Protein Electrophoresis testing ruling out autoimmunity vs. ruling out MGUS (monoclonal gammopathy) or even cancer (but am hoping others know more about this than I do)!

 

[Hipsman]

@Hipsman Someone more sciencey than me can explain this better but about 1.5 yrs ago my doctor ordered protein electrophoresis testing for me (serum & urine) b/c I had consistently elevated IGM for many years. He wanted to rule out MGUS or even cancer. All the tests came back negative so he felt that my elevated IGM was due to autoimmunity. Eventually, my IGM dropped down into the normal range. I had not heard of Serum Protein Electrophoresis testing ruling out autoimmunity vs. ruling out MGUS (monoclonal gammopathy) or even cancer (but am hoping others know more about this than I do)!

Thank you for sharing. Do you suspect autoimmunity and do you think it contributes to your sumptoms?

 

[gbells]

CFS/ME is an autoimmune disease

What makes you say this? Rheumatologists don't treat SEIDs. I had SEIDs for four years before I developed autoimmune symptoms from systemic lupus erythematosis.

 

[Daffodil]

What makes you say this? Rheumatologists don't treat SEIDs. I had SEIDs for four years before I developed autoimmune symptoms from systemic lupus erythematosis.

i must have believed that at the time but now I believe the disease exists because the brain stem is being compressed due to craniocervical instability.

I hope I don't believe something else next year lol

 

[Hipsman]

i must have believed that at the time but now I believe the disease exists because the brain stem is being compressed due to craniocervical instability.

I hope I don't believe something else next year lol

I don't think we should belive in one cause for everyone, autoimmunity and/or CCI can be for majority, but there will always be more that one group of patience with cfs

 

[gbells]

i must have believed that at the time but now I believe the disease exists because the brain stem is being compressed due to craniocervical instability.

I hope I don't believe something else next year lol

I think the instability is aggravating a weakness of the ligaments due to chronic inflammation from multiple infections. Some patients note that after their CCI issues are addressed surgically that they still have other SEIDs problems remaining.

 

[Daffodil]

I think the instability is aggravating a weakness of the ligaments due to chronic inflammation from multiple infections. Some patients note that after their CCI issues are addressed surgically that they still have other SEIDs problems remaining.

it seems that way somewhat but it's early in the game yet. I know Jeff considers himself pretty much recovered and even goes to the gym and lifts weights. The neuro symptoms and brain fog is gone for most people after surgery. Perhaps it takes a long time for the body to get back to normal after long term illness or perhaps there is lasting damage to mitochondria and whatnot.

Unfortunately, there is no data yet on immune markers before and after CCI surgery but Jeff stated that his EBV antibody titres normalized for the first time after surgery.

The brain stem controls a lot of body processes..if it is compressed......digestion breathing immune system, everything is affected

 

[gbells]

The brain stem controls a lot of body processes..if it is compressed......digestion breathing immune system, everything is affected

I don't think that brain stem compression would cause a positive EBV blood test.

 

[Daffodil]

I don't think that brain stem compression would cause a positive EBV blood test.[/QUOTE

downstream effects

delays gastric emptying, leaky gut, bacterial translocation, inflammation?

spinal cord injury causes low NK cell function....

 

[Gingergrrl]

Thank you for sharing. Do you suspect autoimmunity and do you think it contributes to your sumptoms?

In my case my illness turned out to be autoimmunity (but I am not sure how the elevated IgM played a role)?