Autoantibodies and ANAs

[kisekishiawase]

@Malea @Lisa108 @manasi12 @Mel9 @Gingergrrl

Sorry for tagging again im curious.
To people who tested positive and have heart issues may i know what are the symptoms?

If its similiar to what i have?

I have palpitation,
tachycardia. Heart thumping so hard, excersize intolerance, pots symptoms, etc.

i wonder if it caused by it since i have AI.

I read about muscarinic, adrenergic AI and it covers many systems

 

[Malea]

I have palpitation,
tachycardia. Heart thumping so hard, excersize intolerance, pots symptoms, etc.

I have all of these symptoms, too. But I can’t really say, if these symptoms in my case are caused by the existance of the ABs because so much other stuff is going on that could cause them, too. (MCAS, CCI, probably some form of EDS and so on)

But nearly everyone I met along the way on the internet who had POTS-symptoms and got tested for the ABs, tested positive. (And there have been some studies in the past, that healthy people don’t)

 

[Lisa108]

Sorry, @kisekishiawase , I don't know.

 

[Gingergrrl]

@Malea @Lisa108 @manasi12 @Mel9 @Gingergrrl
Sorry for tagging again im curious.

No worries about tagging me and I replied in another thread (the thread re: Cell Trend testing) where you had asked the same question. Let me know if you can't find it.

 

[crypt0cu1t]

I don't know enough about all of this to give a good answer but I have not heard of steroids reducing autoantibodies (vs. IVIG reducing fully grown autoantibodies and Rituximab killing the B-cells to stop new autoantibody production). I think that steroids are more to control symptoms

I was also under the impression that steroids control inflammation caused by cytokines but do nothing to actually stop the antibodies from being produced.

 

[Gingergrrl]

I was also under the impression that steroids control inflammation caused by cytokines but do nothing to actually stop the antibodies from being produced.

This is my basic understanding as well.

 

[Belgiangirl]

@Gingergrrl

Can you explain what that means? Did the rheumy say that certain autoantibodies can actually make the ANA titer appear lower than it really is?! (or do you mean something else)?

And good luck @Malea for your appt. I had negative ANA of 1:40 in 2013 and 2014, even when I had a diagnosis of Hashimoto's (autoimmune thyroid), with very high levels of both thyroid autoantibodies. So I know that you can have thyroid autoantibodies and still have a negative ANA.

I did not test it in 2015, but in 2016, my ANA was positive at 1:160, speckled pattern and by then I was positive for 7/9 Cell Trend autoantibodies, anti GAD65, and the N-type Calcium Channel Autoantibody (that correlates w/LEMS). But none of these are common tests like the auto-abs for RA, Lupus, Celiac, etc. I really am not sure which autoantibodies correlate with the ANA?

After two years of IVIG, and one year of Rituximab, my ANA is now negative again at 1:80. My cell trend auto-abs are less (now four positive instead of seven, plus one of the new ones... so technically 5/11 positive now vs. 7/9 positive in 2016). My anti-GAD65 is still positive (but is much lower) vs. my CA+ Channel autoantibody is slightly higher. And my thyroid autoantibodies are much lower (but I was told they will never go negative). I doubt that any of what I just wrote was helpful ... It just seems that autoantibody levels do not always correlate with symptom severity, at least not in my case.

Interesting this!

I only saw now my ANA came back positive in january at 1:160 and pattern spickled.
No further information.
ENA came all back negative so no clue what could be the disease and no further testing.

Only today I let this see to my GP (my health detoriated badly last 6-12 months) from severely mild to more bedbound but also i had quiet a few stressors (trying to have a normal life).

Years ago a rheumatologist test came back positive for antiparietal cells (auto-immune cells affecting intestine apparently...).

This is nothing I have heart of in Belgium
positive for 7/9 Cell Trend autoantibodies, anti GAD65, and the N-type Calcium Channel Autoantibody

and I said my doctor didn't spoke me about it, I only discovered it now.
The reaction (GP in a city I just moved to: "Oh these are the difficult ones to interpret but oh normal, so many people have it. Google few, was the answer... While reading here, 1:160 is quiet high (it means even if we dilute it 160 times it is still positive and it looks spickled and as stated above it says auto-antibodies against the nucleus of the cell.
Nothing that should be considered normal if you ask me. 5% of the people will have it and indeed some may never feel a thing. But I suffer like all the time. So it is difficult to act like this is a statistical artefact like they always do with my results.

Especially the spickled pattern is strange I think....?

So no meds, no follow up, no other tests, typically belgium and how it treats young girls or ladies that are slim and seem healthy otherwise...

 

[Gingergrrl]

I only saw now my ANA came back positive in january at 1:160 and pattern spickled.

This was exactly like my ANA (1:160, speckled pattern) at the point that I was the most ill. Prior to getting sick my ANA was negative (1:40) and now after treatment it is also negative again.

Only today I let this see to my GP (my health detoriated badly last 6-12 months) from severely mild to more bedbound but also i had quiet a few stressors (trying to have a normal life).

I am very sorry to hear this.

Years ago a rheumatologist test came back positive for antiparietal cells (auto-immune cells affecting intestine apparently...).

I am not familiar with anti parietal cells but maybe someone else reading this will be able to help.

This is nothing I have heart of in Belgium
positive for 7/9 Cell Trend autoantibodies, anti GAD65, and the N-type Calcium Channel Autoantibody

These are just the specific autoantibodies that I tested positive for (plus the two Hashimoto's antibodies) and they might not be relevant at all to your case.

The reaction (GP in a city I just moved to: "Oh these are the difficult ones to interpret but oh normal, so many people have it.

I find this to be a very lazy answer on the part of doctors who are not interested in searching further. I had a rheumatologist say this to me in early 2016 so I asked him if he had ever seen a patient with the LEMS (calcium channel) autoantibody, who also had extreme muscle and breathing weakness, and also had a positive ANA of 1:160, speckled pattern) and he said that he had not. So he was actually dismissing my case b/c he just did not know what to do in my opinion vs. truly believing that it was just "normal" or "hard to interpret" etc. Needless to say, I did not continue to see him and got treatment elsewhere.

Nothing that should be considered normal if you ask me.

I totally agree.

 

[Belgiangirl]

Okay that is interesting, well for me the ENA test did not direct anything specific like sjogren, MCDS, SLE, ... I think that's why they just don't know and indeed especially gp's are quiet lazy here in Belgium it seems and often not educated enough I mean if I complain like this and I have to lay all day in bed, as a woman of 33, being dependent of sickness benefits while i have a master degree, please ... do look with me for an answer so that I can have the live I always dreamt of - like normal persons :-S ...

And going to a doctor is already hard because replacing myself gets very difficult even though I can drop in the car and park before the door (driving or going to the car and to the door and driving back already is too much), it gets even harder, and since you are saying things in a convincing or certain way or you know "fierce" (not that you scream but when you finally see a doctor you are enthusiastic to get the answer.
And all you get is basically: another hysteric woman - please...

My short breathedness also: hyperventilation I guess- was the answer.
I went to a pneumologist once, he asked me to come back for further research because something was abnormal. I never knew what. And I was too tired to comply with the next appointment... Maybe this is now 3 yrs ago.
My GP prescribe me a "puffer" as we call it here (for asthma patients) and I use it when I feel like I get a tight chest or to much mucus and coughing or short breathedness.
That's it...
I went to see a cardiologist this week, for the first time in 10 years despite taking inderal (propanolol) for so long for arythmia's, always medicating myself and just asking prescriptions to my GP.

That doesn't ring a bell apparently about "how hypochondriac I am"?

At least if I would be a hypochondriac than I would be very busy with other obsessions since I almost never go to any doctor or make (it to) any appointments or a very lazy one. But apparently doctors are too intelligent to make this reasoning?

By typing this I have pain in my hand. I have pain in my hands and feets all over the place last weeks which is something new, but apart from that i forget almost all symptoms when i am in a cabinet, I don't even bother telling them anymore... Can you imagine?

But so indeed, apparently they found this in january but why the hell tell me? It's just a positive ANA test for the first time in a person that can barely stand on her legs and has complaints for +15 years of weakness, tiredness, malaise, ...

So I am very happy for you that your doctors did intervene!! But I guess that is due to your other results. Because my ana test says positive but for the rest no test results for the specific diseases (ENA) yields positive so no clue.

Also my ferritin is low since I am 18, once way too law.
Last +5 years it is within normal limits, but still on the lowest end. I am looking pale as snow and i am weak and tired all the time. A friend who actually IS ABLE to go to work and do what she wants, had the same thing: got pills. She had complaints about them because it was too unpractical. No problem: go to hospital to get an iron baxter a couple times and the problem is immediately fixed.

I NEVER got that suggestion in +17 years!!

 

[Belgiangirl]

But to go back to the core: I am also as worse as ever and reallly hope I can get back better because this is very hard.
At least now I know where to look...I only have to find the guts and to go to a rheumatologist who is interested and has a good day and knowledge or if not at least does want to look if (s)he can make sense of it... even if that implies trying a medicine and see if it works, as long as something happens and you know you get any healthcare at all and they don't just laugh at you and you have to help yourself and just drink teas and rest a lot and try to stand up right long enough to cook something etc.

But apart from the 1:160 spickled, I am clue less and the doctors are too apparently and don't bother.
Anti-paretal auto-antibody is in the gut/intestines.

I especially wonder what the spickled means, if that would not be there I would tend to ignore it, but you can't tell me this is normal (but anyway once the labaratory noted: serum is yellow on my labwork). No one ever mentioned it.

 

[Gingergrrl]

My short breathedness also: hyperventilation I guess- was the answer. I went to a pneumologist once, he asked me to come back for further research because something was abnormal. I never knew what.

Did the pulmonologist do a spirometry or PFT (pulmonary function test)? I was wondering if that was the abnormal result or something else? All of my spirometry tests for several years showed pulmonary restriction and I had severe shortness of breath. It turned out that it was due to muscle weakness of my lungs and diaphragm and it reversed with the right treatments.

I went to see a cardiologist this week, for the first time in 10 years despite taking inderal (propanolol) for so long for arythmia's, always medicating myself and just asking prescriptions to my GP.

What did the Cardio say? Do you have POTS or a different kind of arrhythmia?

So I am very happy for you that your doctors did intervene!!

I was very, very lucky that I found two doctors who believed me. I never found a neurologist or rheumatologist though and tried very hard.

Also my ferritin is low since I am 18

I've often had low iron and/or ferritin and low-grade anemia, too. Still not sure why but I now take iron (pill) daily.

Anti-paretal auto-antibody is in the gut/intestines.

Can they pursue this (positive ANA titer plus anti-parietal auto-antibody)? To me this shows autoimmunity and I would want further testing (if I was the doctor which of course I am not )

 

[manasi12]

@Malea @Lisa108 @manasi12 @Mel9 @Gingergrrl

Sorry for tagging again im curious.
To people who tested positive and have heart issues may i know what are the symptoms?

If its similiar to what i have?

I have palpitation,
tachycardia. Heart thumping so hard, excersize intolerance, pots symptoms, etc.

i wonder if it caused by it since i have AI.

I read about muscarinic, adrenergic AI and it covers many systems

Sorry for late reply. I too have POTS and autantibodies indicating Sjogrens. I have IST also. So usually always dizzy , tired and get adrenaline surges . I'm in Asia too and though I have cardiologist who knows POTS, there is no doctor who'll give n monitor me for IVIG. Plus it will cost me a fortune . So I'm really stuck and worsening.

 

[kisekishiawase]

Sorry for late reply. I too have POTS and autantibodies indicating Sjogrens. I have IST also. So usually always dizzy , tired and get adrenaline surges . I'm in Asia too and though I have cardiologist who knows POTS, there is no doctor who'll give n monitor me for IVIG. Plus it will cost me a fortune . So I'm really stuck and worsening.

So howd you get the lab test if youre in asia? Im confused if its worth it for me to pursue the test? Also since many doctors dont approve it.
@manasi12

 

[manasi12]

So howd you get the lab test if youre in asia? Im confused if its worth it for me to pursue the test? Also since many doctors dont approve it.
@manasi12

I did the ANA test and ENA test which are common here. Did those at good lab with neurologist suggestion. But how to get treatment that is issue.

 

[tm999]

Can anyone help me interpret this ANA tests? I got the ANA test EIA with reflex cascade in April and it came back positive, but I tested negative for the specific antibodies of the main autoimmune diseases (cascades 1, 2 and 3). On June 4, I tested positive in the RFX titer pattern IFA with 1:640 titer and homogeneous pattern. On June 10 and again June 18, I tested negative on the ANA EIA with RFX cascade test and I am puzzled how I can have very different results in a short period when my titers were so high. I am wondering if anyone has experienced such a quick disappearance of ANA antibodies? I am also wondering if having a positive result in the ANA would be an exclusionary test for CFS/ME? Also, any views on which other autoimmune antibodies tests I could try to ask my doctor to order beyond the rheumatoid arthritis, lupus, sjogren, scleroderma, mixed connective tissue and parietal anti-bodies, which I tested negative? Many thanks!

 

[Gingergrrl]

I am also wondering if having a positive result in the ANA would be an exclusionary test for CFS/ME?

I don't believe so and throughout the years, there have been people on PR who have been both positive and negative on ANA test.

Also, any views on which other autoimmune antibodies tests I could try to ask my doctor to order beyond the rheumatoid arthritis, lupus, sjogren, scleroderma, mixed connective tissue and parietal anti-bodies, which I tested negative?

Have you tested for the two Hashimoto's autoantibodies? Also, would your doctor be willing to order one of the Mayo Panels for more obscure autoantibodies (like DYS1 for autoimmune dysautonomia or PAVAL for paraneoplastic autoantibodies)? There is also Cell Trend, in Germany, which tests for alpha & beta adrenergic autoantibodies and anti muscarinic/cholinergic auto-abs (and a few other, newer tests).

 

[kisekishiawase]

I did the ANA test and ENA test which are common here. Did those at good lab with neurologist suggestion. But how to get treatment that is issue.

But the muscarinic , adrenergic test only available @celltrend right? so how did you get it?


@Gingergrrl hello ive been googling but its hard to find info on muscarinic, adrenergic autoimmune issue? I wonder if in my case its likely that the issue are connected to that or other AI since im positive on jo1 antibody. So i wonder if my heart issue and intolerances are due to other autoantibody: (Heart tachycardia, heart beating hard, exercise intolerance, attack during sleep)

Do you know other people who are acknowledged on that issue too?

 

[manasi12]

But the muscarinic , adrenergic test only available @celltrend right? so how did you get it?


@Gingergrrl hello ive been googling but its hard to find info on muscarinic, adrenergic autoimmune issue? I wonder if in my case its likely that the issue are connected to that or other AI since im positive on jo1 antibody. So i wonder if my heart issue and intolerances are due to other autoantibody: (Heart tachycardia, heart beating hard, exercise intolerance, attack during sleep)

Do you know other people who are acknowledged on that issue too?

Anti Muscarinic M3 receptor antibodies are frequently found in early Sjogrens syndrome. They bind to receptors and impair acetylcholine transmission within autonomic nervous system. This leads to all dysautonomia i.e.heart and BP issues. You may be right that it's mostly autoimmunity driving your issues.

 

[Gingergrrl]

But the muscarinic , adrenergic test only available @celltrend right? so how did you get it?

I believe it is only through Cell Trend (and maybe one other lab in Germany) but I might be wrong.

@Gingergrrl hello ive been googling but its hard to find info on muscarinic, adrenergic autoimmune issue? I wonder if in my case its likely that the issue are connected to that or other AI since im positive on jo1 antibody. So i wonder if my heart issue and intolerances are due to other autoantibody: (Heart tachycardia, heart beating hard, exercise intolerance, attack during sleep)

I Googled your autoantibody Jo-1 and found an article in case it is helpful. It seems to affect muscle weakness and lungs if I am understanding the article correctly. What did your doctor say about it?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380442/

 

[tm999]

I don't believe so and throughout the years, there have been people on PR who have been both positive and negative on ANA test.



Have you tested for the two Hashimoto's autoantibodies? Also, would your doctor be willing to order one of the Mayo Panels for more obscure autoantibodies (like DYS1 for autoimmune dysautonomia or PAVAL for paraneoplastic autoantibodies)? There is also Cell Trend, in Germany, which tests for alpha & beta adrenergic autoantibodies and anti muscarinic/cholinergic auto-abs (and a few other, newer tests).

Thank you for your response! I did test negative for Hashimoto. I have not done the tests you mentioned and had never heard of them. I will look into them.