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Not sure what to do? ANA negative but RNP repeatedly high

Posted by jpoodle @jpoodle, Dec 18, 2023

Shifting joint pain and fatigue started about 2 years ago. ANA negative with low vitamin D. Primary care Dr ordered larger blood panel due to progressive symptoms of tingling and numbness in feet. Vitamin D back to normal with supplementation. ANA came back negative but RNP was positive/high. All other tests have come back normal: MRI of brain and neck, thyroid, A1C, B12, nerve conduction, various infections (Lyme), etc. Symptoms are waxing and waning (except tingly feet, that never changes) and have progressed to include shooting pain from my shoulder blades down the outside of my arms to my outside fingers, tingly and numb fingers, random jabs/stabbing pains all over, and this uncomfortable feeling on the top of my scalp. RNP has been high 4 times with negative ANA each time. Rheumatologist says unlikely to be a false positive that many times but other than that, not sure what’s going on. Do I just wait and deal with these symptoms until something changes? I’m managing but it’s not great to feel this way.

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pb50 | @pb50 | Dec 18, 2023

There are a lot of permutations in combinations of these two variables. You may have done this but if you enter this search term into Google you will see there are multiple Scenarios that could produce that combination. See if you resonate with any of them.

ANA negative but RNP high

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jpoodle | @jpoodle | Dec 18, 2023

Thank for your reply. Have tried that and nothing seems right. Have scoured peer reviewed journal articles and am working with a rheumatologist and a neurologist.

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pb50 | @pb50 | Dec 18, 2023

Well then that’s the right answer.

Keep us posted!

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windyshores | @windyshores | Dec 19, 2023

From the other post it seems this is not true:
"Testing for RNP antibodies is not useful in patients without demonstrable antinuclear antibodies." (Mayo Clinic Labs)

Did you have an Elisa or Western Blot Lyme test. It should be a Western Blot because Elisas have false negatives. Docs use the Elisa to screen and if positive go on to a Western Blot, but you can request a Western Blot.

Next problem is interpreting the Western Blot which is controversial. CDC wants a certain number of bands and a lot of Lyme docs go by whether bands are Lyme-specific, even if just one band (like 23).

I had your symptoms with a negative Lyme test and once I went on antibiotics the test turned positive! Diagnosis is pretty complex. You can try lymenet.org to find a doc (there are some extreme views on there though, in my view).

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3 replies
jpoodle | @jpoodle | Dec 20, 2023
In reply to @windyshores "From the other post it seems this is not true: "Testing for RNP antibodies is not..." + (show)
@windyshores

From the other post it seems this is not true:
"Testing for RNP antibodies is not useful in patients without demonstrable antinuclear antibodies." (Mayo Clinic Labs)

Did you have an Elisa or Western Blot Lyme test. It should be a Western Blot because Elisas have false negatives. Docs use the Elisa to screen and if positive go on to a Western Blot, but you can request a Western Blot.

Next problem is interpreting the Western Blot which is controversial. CDC wants a certain number of bands and a lot of Lyme docs go by whether bands are Lyme-specific, even if just one band (like 23).

I had your symptoms with a negative Lyme test and once I went on antibiotics the test turned positive! Diagnosis is pretty complex. You can try lymenet.org to find a doc (there are some extreme views on there though, in my view).

Jump to this post

Interesting about the Lyme testing. I had ELISA screening and now plan on asking my doctors about Western Blot. Probably worth looking into anyway.

Thanks so much for taking the time to reply!

REPLY
pb50 | @pb50 | Dec 20, 2023
In reply to @windyshores "From the other post it seems this is not true: "Testing for RNP antibodies is not..." + (show)
@windyshores

From the other post it seems this is not true:
"Testing for RNP antibodies is not useful in patients without demonstrable antinuclear antibodies." (Mayo Clinic Labs)

Did you have an Elisa or Western Blot Lyme test. It should be a Western Blot because Elisas have false negatives. Docs use the Elisa to screen and if positive go on to a Western Blot, but you can request a Western Blot.

Next problem is interpreting the Western Blot which is controversial. CDC wants a certain number of bands and a lot of Lyme docs go by whether bands are Lyme-specific, even if just one band (like 23).

I had your symptoms with a negative Lyme test and once I went on antibiotics the test turned positive! Diagnosis is pretty complex. You can try lymenet.org to find a doc (there are some extreme views on there though, in my view).

Jump to this post

I’m Curious…
Do you understand why your Lyme test would turn positive after an antibiotic course ?

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1 reply
windyshores | @windyshores | Dec 21, 2023
In reply to @pb50 "I’m Curious… Do you understand why your Lyme test would turn positive after an antibiotic course..." + (show)
@pb50

I’m Curious…
Do you understand why your Lyme test would turn positive after an antibiotic course ?

Jump to this post

The doc said I had had Lyme for quite awhile and it was "hiding" in tissue, and the antibiotics flushed the Lyme out, so to speak. Look up Herxheimer reaction for info on this. My own view is, who knows?! I had testing at a mainstream lab so the results were pretty reliable, and I met the CDC requirements for a positive diagnosis.

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pb50 | @pb50 | Dec 22, 2023

Thanks. I was transferring medical records from a prior health org in another state and found a Western Blot test result. I understand less than nothing about the test but I have several rows on the table that say “abnormal”. I think I had a pneumonia diagnosis at that time.

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1 reply
windyshores | @windyshores | Dec 22, 2023
In reply to @pb50 "Thanks. I was transferring medical records from a prior health org in another state and found..." + (show)
@pb50

Thanks. I was transferring medical records from a prior health org in another state and found a Western Blot test result. I understand less than nothing about the test but I have several rows on the table that say “abnormal”. I think I had a pneumonia diagnosis at that time.

Jump to this post

I will PM you. @pb50

REPLY
marymaryoregon | @marymaryoregon | Dec 25, 2023
In reply to @windyshores "From the other post it seems this is not true: "Testing for RNP antibodies is not..." + (show)
@windyshores

From the other post it seems this is not true:
"Testing for RNP antibodies is not useful in patients without demonstrable antinuclear antibodies." (Mayo Clinic Labs)

Did you have an Elisa or Western Blot Lyme test. It should be a Western Blot because Elisas have false negatives. Docs use the Elisa to screen and if positive go on to a Western Blot, but you can request a Western Blot.

Next problem is interpreting the Western Blot which is controversial. CDC wants a certain number of bands and a lot of Lyme docs go by whether bands are Lyme-specific, even if just one band (like 23).

I had your symptoms with a negative Lyme test and once I went on antibiotics the test turned positive! Diagnosis is pretty complex. You can try lymenet.org to find a doc (there are some extreme views on there though, in my view).

Jump to this post

Keep in mind when you see things posted on a public website (like Mayo) where it says “it is not useful to test for RNP without a positive ANA”. They are trying to say: in general, it is not the best idea to order this test for everyone if you have a negative ANA. But clinically… there actually might be people out there that have these rare results with discrepancies! Or their specialist feels there is a specific reason to do a certain test. That message is for the 95% or so of people who will probably not need an RNP antibody test after a negative ANA.

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