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Question re: ANA results

Gingergrrl

Senior Member
Messages
16,171
Would that be testing for anti-citrullinated protein antibody, a common marker seen in rheumatoid arthritis?

I re-checked my autoimmune testing and I did have this anti-citrullinated antibody test but was negative. My number was "5" but the range was totally different. My only positives were the ANA and Hashimotos Abs (plus the abnormalities on the Mayo paraneoplastic panel which few docs know what to do with.)
 

Gingergrrl

Senior Member
Messages
16,171
Yes, but the rheumatologist said I don't have rheumatoid arthritis. I don't think I do either, as the only joint pain I get is in my hands and its minimal.

Just checked the results again, and although unclear due to blurry scan and a line on the original paper, it definitely appears to be 161 or 164. Anything greater than 59 is considered "strong positive." I don't understand how I can have that high of a number and not have RA.

@Strawberry can you ask the rheumy to clarify? The rheumy I saw dismissed my positive ANA of 1:160 speckled pattern as a false positive which I think is pure nonsense. Why do these tests if they are all dismissed when abnormal?
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
My rheumatologist said 1:160 titres were not relevant too. Once the numbers climb by a couple more factors to 1:320 or 1:640 I think doctors start to think the result might be relevant. My ANA is 1:1280 and the doctors agree that this probably does mean something!
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
@Strawberry can you ask the rheumy to clarify?
I haven't seen her in probably 5 years. The blood work she had ran said no lupus or RA markers, no ANA. Although she only ran blood once, while my doctor had had positive ANA come back two times before he sent me to her. Two different doctors, two different labs, drastically different test results. One I could see as being a false positive, but I had two positives before I was sent to her, and one positive since. My normal doctor (and me) believe the 3 positives over her tests, as obviously I haven't felt well for years, and he knows it.

And this "Why do these tests if they are all dismissed when abnormal?" could be the golden question...
 

Gingergrrl

Senior Member
Messages
16,171
My ANA is 1:1280 and the doctors agree that this probably does mean something!

@daisybell Do they say what they think it might mean or just leave you guessing to figure it out on your own? I would think a number that high has to mean something even if other markers are negative.

And this "Why do these tests if they are all dismissed when abnormal?" could be the golden question...

Agreed and I cannot tell you how many abnormal tests I have had dismissed in the last three years, not just autoimmune stuff but ischemia on a treadmill tests, breathing tests, autonomic tests, etc. Why do them if the abnormal result is then dismissed as a "false positive" or as "poor effort" etc?
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Just checked the results again, and although unclear due to blurry scan and a line on the original paper, it definitely appears to be 161 or 164. Anything greater than 59 is considered "strong positive." I don't understand how I can have that high of a number and not have RA.
I thought yours was a seriously high positive too when I saw the reference range.

Channelopathies are something being seen to be implicated in ME/CFS.

ANA, as a marker for autoimmune inflammation is often found in a number of autoimmune conditions along with voltage-gated calcium channel antibodies (VGCC), the N-type VGCC Ab (that @Gingergrrl was found to have) has been reported in some of the few with ME/CFS that get tested for this Ab. It's known to be pathogenic so it's worth getting tested for that with an ANA finding in my opinion. It's a readily available blood test, costs about $120 here in Australia.

It's one that I was tested for too (in the absence of an ANA finding) as it shows up in small percentage of those with just chronic GI dysfunction (I don't have ME/CFS) and I have a low titre in the "normal range".

Strangely enough, I don't have any sign of inflammatory markers in blood tests yet my bowel was badly inflamed at my last colonoscopy and was easily perforated during the procedure so inflammatory markers, or the lack of, are not something you can rely on as indicative of seriousness of a particular condition.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
@daisybell Do they say what they think it might mean or just leave you guessing to figure it out on your own? I would think a number that high has to mean something even if other markers are negative.
Eventually the rheumatologist decided to give me a diagnosis of CREST syndrome but after some initial testing to rule out potential problems associated with the condition (such as pulmonary hypertension) they decided that everything was stable, and discharged me from the service. This was obviously despite me having ME/CFS, as they weren't interested in that at all. So I technically have two named auto-immune conditions (I also have Graves' disease) - neither of which is actually being monitored by anyone!
Personally I think everything has to be related - and I'm not at all sure that the high anti-nuclear antibodies that I have aren't related to my ME symptoms, but as no medical person is interested, I just try to ignore it all. One day I hope to get rituximab and perhaps that will sort all the issues for me.
 

Gingergrrl

Senior Member
Messages
16,171
I thought yours was a seriously high positive too when I saw the reference range.

Me, too, (re: @Strawberry) which was why I thought it might be worth asking the rheumy or consulting with a new one.

Channelopathies are something being seen to be implicated in ME/CFS. ANA, as a marker for autoimmune inflammation is often found in a number of autoimmune conditions along with voltage-gated calcium channel antibodies (VGCC), the N-type VGCC Ab (that @Gingergrrl was found to have) has been reported in some of the few with ME/CFS that get tested for this Ab. It's known to be pathogenic so it's worth getting tested for that with an ANA finding in my opinion. It's a readily available blood test, costs about $120 here in Australia.

@kangaSue I know we've talked about this but your comments made me curious about a few things. You said that channelopathies are being implicated in ME/CFS and that is my understanding from the work at the Charite in Germany, too. Do you think my calcium channelopathy could some day end up being a biomarker (for the auto-immune sub-group of ME/CFS) or do you think that even if everyone on PR was somehow tested, this auto-antibody would still be rare?

I recently joined a Facebook group with members from all over the world with this auto-antibody and there are only about 36 members which makes me think that either the antibody is extremely rare or very few people are being tested. And the people in the FB group have a vast variety of diagnoses and many are struggling to find a diagnoses b/c they have horrible symptoms but no diagnosis. Some have LEMS (which was ruled out for me by EMG) but most do not.

I was also curious b/c you said the ANA is a marker for autoimmune inflammation but could the ANA correlate with something like the N-type VGCC or only with things like Lupus, Rheumatoid Arthritis, and known diseases? Am trying to really grasp this b/c if I had tested positive for the lupus markers (which I didn't) then the rheumy I saw was fully on board for IVIG, RTX or even plasmapheresis but once I did not meet criteria for a well-established autoimmune disease and I "just" had the N-type Calcium channel Ab (plus the anti GAD65 Ab, the two Hashi's Ab's, etc) he decided the ANA must be a false positive which is crazy to me. The calcium Abs might be weakening all my neuromuscular junctions according to other doctors who can think outside the box and I'm now getting the opportunity to try IVIG but only b/c I fought like hell after two neuros and that rheumy said no.

Lastly, you said the test is readily available in Australia but I have a friend here in the US who I was talking to last night who literally cannot get any of his docs to order this test and we were brain-storming how he can get it. I lucked out that I was tested for it (without even knowing what I was being tested for) but then even when it was positive, the doc who tested me denied me any treatment. Do you know how someone would go about getting this test in general?

Strangely enough, I don't have any sign of inflammatory markers in blood tests yet my bowel was badly inflamed at my last colonoscopy and was easily perforated during the procedure so inflammatory markers, or the lack of, are not something you can rely on as indicative of seriousness of a particular condition.

That is wild, and I would have thought for sure that your ANA would be positive!
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl I'm so happy for you that you are getting to try some new treatments that will hopefully help. Have you felt any change in your breathing since your infusion?

@PDXhausted Thank you and as far as my breathing, I have noticed some very small changes but nothing to the level that I could walk without the motorized wheelchair inside of my apt. I've noticed that my breathing is better in the sense that I am able to do more while lying down or seated and my arm strength has improved. So I can do many little daily tasks now without assistance (while seated) without becoming short of breath.

I was able to do many errands back to back with my husband today (pharmacy, get bday gifts for my mom and bring them to her, go out to dinner, etc) and I felt completely normal doing all of this- with wheelchair of course. However, at one point, we parked somewhere in which getting out of the car meant stepping up on a curb (the equivalent of one stair) b/c it was not a wheelchair accessible parking space. I thought, I can do this no problem, but when I stood up and stepped up onto the curb, I became breathless immediately and it worsened over the next 5-10 minutes until I was completely breathless and got chest pain and it took about 30 min to subside.

So in that sense, there is no improvement in my ability to stand, walk, or ascend a curb that is equal to one step. But seated, I can now open bottles, carry items from cabinet, hang my towel on the rack and stuff that prior to the IVIG my arm was so weak that forcing it would leave me breathless (or I just couldn't do this stuff and required assistance.) So overall, I feel stronger and see an improvement but absolutely nowhere to the level that I could walk even just the length of my bedroom without the motorized wheelchair. But I never expected this from one IVIG treatment so I am not disappointed. Sorry for such a long-winded answer!

Eventually the rheumatologist decided to give me a diagnosis of CREST syndrome but after some initial testing to rule out potential problems associated with the condition (such as pulmonary hypertension) they decided that everything was stable, and discharged me from the service. This was obviously despite me having ME/CFS, as they weren't interested in that at all. So I technically have two named auto-immune conditions (I also have Graves' disease) - neither of which is actually being monitored by anyone!

I am horrified that you have Crest Syndrome and Graves and no one is monitoring either condition (although I know at this point that nothing should horrify me any more). I am hoping you can receive some real medical care in the future.

Personally I think everything has to be related - and I'm not at all sure that the high anti-nuclear antibodies that I have aren't related to my ME symptoms, but as no medical person is interested, I just try to ignore it all. One day I hope to get rituximab and perhaps that will sort all the issues for me.

I am with you and hope to get the opportunity to try RTX some day, too. Have discussed it with one of my doctors and we want to see how I do with 3-4 treatments of IVIG at the higher dose. If my insurance will permit this, then I might be able to try RTX in the future but am doing one thing at a time. I doubt my insurance would allow RTX and I will apply for the program through Genentech if I do get to that point. I am not sure if that program is only in the U.S. and have not looked into it yet.
 

PDXhausted

Senior Member
Messages
258
Location
NW US
@Gingergrrl I'm so excited for you, I hope this is the first step to recovery for you.

I'm in the process of getting more tests done including re-doing my ANA (I was only 1:40 when I first became ill) and doing the Mayo panel that you had, since I have a lot of muscle problems that may not be typical of ME. So we'll see. It's been helpful reading about your story though.

In the process, I just tested positive for some bacteria too so I may have something entirely else going on. I guess we'll see how everything shakes out...
 

Gingergrrl

Senior Member
Messages
16,171
Thanks @PDXhausted and I'd be very interested to learn what your Mayo test results show (and my prior ANA's were always 1:40 back to 2010 before this one.) I'm glad my story has been helpful. In my FB group, someone just posted about how the calcium channels are leaky (with this antibody) and that this relates to the muscle weakness. I really relate to the experiences in that group and wonder if this antibody ties in with many diseases and not just ME/CFS (or a subgroup of ME/CFS.) It is so complex and am really hoping that IVIG and the treatments I am pursuing to reduce this antibody are on the right track no matter what label my disease ultimately has.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Do you think my calcium channelopathy could some day end up being a biomarker (for the auto-immune sub-group of ME/CFS) or do you think that even if everyone on PR was somehow tested, this auto-antibody would still be rare?
@Gingergrrl , I'm no expert and I've mostly researched this from a chronic GI dysfunction angle with not having ME/CFS myself but channelopathies in ME/CFS includes a few different ion channel antibodies so I think your N-type voltage-gated calcium channel Ab specifically is still going to be at the relatively rare end of the spectrum, same as it is for those with autoimmune GI dysfunction but statistics for both conditions are built on relatively few people being antibody tested. Channelopathy testing could at least identify a sub-group that should benefit from rituximab.

It would certainly be interesting to see the results if everyone was put through the equivalent of the Mayo PAVAL panel http://www.mayomedicallaboratories.com/test-catalog/Overview/83380. I for one wouldn't be surprised if nicotonic acetylcholine receptor (AChR) antibodies (GANG AChR Ganglionic Neuronal Ab in the Mayo panel) turned out to be even more prevalent (as is the case in those tested for autoimmune GI dysfunction) as this can affect all aspects of vagus nerve signalling function, vagus nerve being a nicotonic AChR. It is even rarer to be tested for this though and very few centers are able to do this test.
I was also curious b/c you said the ANA is a marker for autoimmune inflammation but could the ANA correlate with something like the N-type VGCC or only with things like Lupus, Rheumatoid Arthritis, and known diseases?
ANA or even GAD65 I think can be the marker of something going on and, in your case, N-type VGCC is the pathogenic antibody that is being alluded to, at least, I think that's the way it goes. When you get a marker and pathogenic antibody together, that could mean a hidden cancer is brewing somewhere so a paraneoplastic syndrome, but not necessarily so.

By the way, it's not something you really want to hear but I was reading recently that a cancer from paraneoplastic syndrome can remain elusive for up to 5 years. Great to hear that you are finally getting IVIG though. I don't know if that gives any protection from a paraneoplastic syndrome, hopefully it does.
Lastly, you said the test is readily available in Australia but I have a friend here in the US who I was talking to last night who literally cannot get any of his docs to order this test and we were brain-storming how he can get it. I lucked out that I was tested for it (without even knowing what I was being tested for) but then even when it was positive, the doc who tested me denied me any treatment. Do you know how someone would go about getting this test in general?
I priced the test at a couple of major players in the private pathology testing field here, both said they could do it but the test was outsourced which I found out in my home state is done through the major State Government pathology lab, Pathology Queensland. I assumed the same should apply in the States so maybe one of the major tertiary institutions over there? Or maybe they are bigger money grubbers over there in wanting to lump one test in with a heap of others to extract the maximum from your pocket?

It doesn't even need a specialist to order the test here, my G.P. made the request for me.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Perhaps @Jonathan Edwards would like to comment about the Anti-CCP titer.

The relevance of all these autoantibody tests is only statistical. I personally think there are strong reasons for thinking that people with symptoms of ME/CFS with high autoantibody titres are probably suffering from an autoimmune process, but for individual cases one can never be sure.

As an analogy. If an archaeologist finds a new cave dwelling civilisation by the beach he may look around to see if there are knife-shaped stones. If in the cave there are bones of animals with cuts that would need such stones then if he finds a knife shaped stone on the beach he might well think it had been used. But if you look hard enough on a beach you are bound to find pretty much knife shaped stones. And if there are no animal bones in the cave and you find knife shaped stones you are not necessarily going to think they were used for hunting.

So an autoantibody is never in itself a diagnosis of a disease. The illness part of the disease must be there in order to think the autoantibody might have caused it. If an autoantibody does not fit an illness it is hard to know if it means anything. If the cave had burnt bones in it you might think the knife shaped stones had been used to hunt the animals that were then cooked, but they might have been trapped and cooked. And of course if you know from other caves that there are nearly always knife shaped stones where there is cooking you may infer hunting with stones, but it is all speculation. That is why doctors disagree so much and why setting 'diagnostic levels' on these lab tests is silly.

Some tests give diagnoses. A fracture on an x-ray means a broken bone. A flat ECG means no heart activity. But in chronic illness tests are generally not like that, as you know.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
So an autoantibody is never in itself a diagnosis of a disease. The illness part of the disease must be there in order to think the autoantibody might have caused it. If an autoantibody does not fit an illness it is hard to know if it means anything.

But why does this have to be when we are so obviously ill? I don't quite understand that, unless it is just the point that no one knows where to look other than lupus and RA. I have had 3 low positive (1:80 speckled) ANA, and while looking up that data for this thread, I noticed for the first time the very high anti C citrulli (184). Even if doctors don't know what that means if lupus and RA are negative, wouldn't you think that it should be investigated further when we are obviously in a downward spiral?

Sorry, I feel like a brat with this post, but this IS my life that is slowly wasting away. I do understand that you know how frustrated we can get, so my apologies, I'm not trying to be insensitive to you. Just venting!

My daughter used to say she wanted her Mom back, but now that she is 21, she no longer remembers what that mildly ill and fatigued Mom was even like. All she remembers is the Mom that can't hike, camp, be social, go to movies, clean, cook.....
:cry:
 

Kati

Patient in training
Messages
5,497
But why does this have to be when we are so obviously ill? I don't quite understand that, unless it is just the point that no one knows where to look other than lupus and RA. I have had 3 low positive (1:80 speckled) ANA, and while looking up that data for this thread, I noticed for the first time the very high anti C citrulli (184). Even if doctors don't know what that means if lupus and RA are negative, wouldn't you think that it should be investigated further when we are obviously in a downward spiral?

Sorry, I feel like a brat with this post, but this IS my life that is slowly wasting away. I do understand that you know how frustrated we can get, so my apologies, I'm not trying to be insensitive to you. Just venting!

My daughter used to say she wanted her Mom back, but now that she is 21, she no longer remembers what that mildly ill and fatigued Mom was even like. All she remembers is the Mom that can't hike, camp, be social, go to movies, clean, cook.....
:cry:
Hi @Strawberry I understand your distress very well. We are all looking for a biomarker which will not only determine what illness we have but also measure its degree of severity. To have it on paper would prove very handy to show our doctors, family and friends that indeed we are sick.

It's just that ANA is not diagnostic of anything these days. We simply don't know what it means. Healthy people can have a high titer, and that says it all.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
But why does this have to be when we are so obviously ill? I don't quite understand that, unless it is just the point that no one knows where to look other than lupus and RA. I have had 3 low positive (1:80 speckled) ANA, and while looking up that data for this thread, I noticed for the first time the very high anti C citrulli (184). Even if doctors don't know what that means if lupus and RA are negative, wouldn't you think that it should be investigated further when we are obviously in a downward spiral?

Sorry, I feel like a brat with this post, but this IS my life that is slowly wasting away. I do understand that you know how frustrated we can get, so my apologies, I'm not trying to be insensitive to you. Just venting!

My daughter used to say she wanted her Mom back, but now that she is 21, she no longer remembers what that mildly ill and fatigued Mom was even like. All she remembers is the Mom that can't hike, camp, be social, go to movies, clean, cook.....
:cry:

Looking back you say the test was for C citrulli. I don't think that has anything to do with citrullinated peptide antibody or RA in fact. I guess C citrulli is some sort of bacteria or something.

I think you are right that the problem is simply that nobody knows where to look further. Physicians cannot investigate if nobody knows what they would test for.
 

Gingergrrl

Senior Member
Messages
16,171
@Jonathan Edwards This seems strange to me b/c a doctor tested me for the paraneoplastic panel, discovered I had the N-type calcium channel antibody, and then that I had a positive ANA 1:160 speckled pattern (when all prior ANA's were negative.)

There must be a connection b/c this antibody blocks calcium from going into the cells and there is now research that shows when athletes exercise, they can leak calcium from the cells. So whether it is leaking or being blocked by an antibody, the calcium is not inside of the cell and it can cause muscle weakness, pain, and all sorts of problems. It seems like scientists would be interested in the more obscure antibodies, especially when someone who has them are so sick.

If they highly correlate to small cell lung cancer and LEMS (Lambert Eaton Syndrome) then they are capable of causing severe damage. It seems like treating or reducing them at at earlier point would be of value (to the patient and to furthering science.) All I was told is to get a high resolution lung cat scan every six months and to get tested for LEMS which I did immediately. I had to fight like hell to get IVIG (which I am doing now) and every step of this process is occurring b/c I have found solid doctors to help me and an iron-clad will to keep going.

It seems like science saying, "We don't know and we don't care" is a cop-out and like @Strawberry I am just venting and this is not directed at you or any one person!
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl, I'm no expert and I've mostly researched this from a chronic GI dysfunction angle with not having ME/CFS myself but channelopathies in ME/CFS includes a few different ion channel antibodies so I think your N-type voltage-gated calcium channel Ab specifically is still going to be at the relatively rare end of the spectrum, same as it is for those with autoimmune GI dysfunction but statistics for both conditions are built on relatively few people being antibody tested. Channelopathy testing could at least identify a sub-group that should benefit from rituximab.

Thanks and I value your opinion b/c you are one of the few people who currently post on this board (that I know of) who has been tested for these antibodies and researched them in detail so you are an expert to me :). I tend to agree with you that the N-type VGCC is rare but if more people were tested, we'd find out that it is not as rare as we thought it was. I also agree that channelopathies can identify the sub-group who could benefit from RTX and I am hoping to get RTX next year after several months of trying IVIG and seeing how that goes.

It would certainly be interesting to see the results if everyone was put through the equivalent of the Mayo PAVAL panel http://www.mayomedicallaboratories.com/test-catalog/Overview/83380. I for one wouldn't be surprised if nicotonic acetylcholine receptor (AChR) antibodies (GANG AChR Ganglionic Neuronal Ab in the Mayo panel) turned out to be even more prevalent (as is the case in those tested for autoimmune GI dysfunction) as this can affect all aspects of vagus nerve signalling function, vagus nerve being a nicotonic AChR. It is even rarer to be tested for this though and very few centers are able to do this test.

I was negative on the AChR antibodies but I do know of a few people who were positive (who are not posting on this board.) I know there is also an experimental test in Germany for another similar Ab (I forget the name at present) and I suspect I would be positive for this one if tested based on my past reactions to both cholinergic and anti-cholinergic meds.

ANA or even GAD65 I think can be the marker of something going on and, in your case, N-type VGCC is the pathogenic antibody that is being alluded to, at least, I think that's the way it goes. When you get a marker and pathogenic antibody together, that could mean a hidden cancer is brewing somewhere so a paraneoplastic syndrome, but not necessarily so.

I agree that the N-type VGCC Ab is the pathogenic Ab being reflected by the ANA (b/c 2-3 years ago when I had the Hashi's Abs, my ANA was still negative.) I know it can correlate with a hidden cancer but so far, this has not been found in my case. My understanding is that if it is a paraneoplastic syndrome (the dysautonomia, shortness of breath, muscle weakness, etc) then treating the cancer could eliminate the PNS, but since they have not found any cancer, there is nothing to treat in that regard so we are trying to knock down the Abs, first starting with the IVIG.

By the way, it's not something you really want to hear but I was reading recently that a cancer from paraneoplastic syndrome can remain elusive for up to 5 years. Great to hear that you are finally getting IVIG though. I don't know if that gives any protection from a paraneoplastic syndrome, hopefully it does.

Thanks and I have had my first IVIG treatment and second on 8/10 at higher dose. We are building up slowly to the autoimmune dose. I have heard anywhere from 3-5 years as the length of time that someone with these antibodies should be tested for cancer which is scary. Am hoping if the IVIG reduces the antibody that it gives some protection against the cancer and PNS but who knows? My high resolution lung cat scan which included the thyroid and thymus glands was clear in March 2016 and if I repeat in six months that is around Sept/Oct. But it's a lot of radiation to keep repeating it!

I priced the test at a couple of major players in the private pathology testing field here, both said they could do it but the test was outsourced which I found out in my home state is done through the major State Government pathology lab, Pathology Queensland. I assumed the same should apply in the States so maybe one of the major tertiary institutions over there? Or maybe they are bigger money grubbers over there in wanting to lump one test in with a heap of others to extract the maximum from your pocket? It doesn't even need a specialist to order the test here, my G.P. made the request for me.

Thanks and will relay this info to my friend although it may be different in the US vs. Oz.