dsDNA results from Mayo Clinic vs Other Labs

Posted by anxiousowl4 @anxiousowl4, Dec 27, 2023

How does Mayo Clinic process dsDNA bloodwork differently than other labs? After having multiple lupus symptoms, my home lab had me at an ANA titer of 1:160 and dsDNA of 33 with an abnormal but unassociated ENA. Reluctant to do anything, my rheumatologist said that she wanted a new sample to send to Mayo because they did dsDNA "differently."

My results came back today and my Mayo Clinic results were: dsDNA Ab with Reflex, IgG, S < 12.3 IU/mL < 30.0 (Negative) Negative for dsDNA antibody by enzyme immunoassay. No
further testing recommended.

The labs were taken a week apart. What could account for the difference?

What would be a reasonable next step considering my labs the week before and symptoms?

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Interesting fact:
I had sent an email to the folks at Mayo who were looking for patients of IBM for clinical trials. Never heard back from them as to whether my qualification was adequate or any further info. This cannot be the norm (?).

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All lab tests fluctuate some and results can be different between labs, which adds to confusion. Your 1st result of 33 is just above the threshold of what is considered positive and the 2nd result could have been 29 (but considered negative because it is under 30). With 3 labs being abnormal (do you know the other ENA?) and symptoms, there seems to be something going on. In my experience over 40+ years, I see many rheumatologists who dismiss symptoms and positive labs and are reluctant to make a diagnosis. This can mean longer suffering, more pain and possibly damage to organs for lack of treatment. I would seek a second opinion as IMO dsDNA of 33 is significant. Make a thorough list of signs and symptoms, perhaps a diary of those, and gather all labs you have had done before seeing another Dr. PS do you have IBM?

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@slkanowitz

All lab tests fluctuate some and results can be different between labs, which adds to confusion. Your 1st result of 33 is just above the threshold of what is considered positive and the 2nd result could have been 29 (but considered negative because it is under 30). With 3 labs being abnormal (do you know the other ENA?) and symptoms, there seems to be something going on. In my experience over 40+ years, I see many rheumatologists who dismiss symptoms and positive labs and are reluctant to make a diagnosis. This can mean longer suffering, more pain and possibly damage to organs for lack of treatment. I would seek a second opinion as IMO dsDNA of 33 is significant. Make a thorough list of signs and symptoms, perhaps a diary of those, and gather all labs you have had done before seeing another Dr. PS do you have IBM?

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Sorry I see the IBM post was from someone else.

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@nmenonk2022

Interesting fact:
I had sent an email to the folks at Mayo who were looking for patients of IBM for clinical trials. Never heard back from them as to whether my qualification was adequate or any further info. This cannot be the norm (?).

Jump to this post

You might have better luck going to the NIH website (clinical trials.gov) and doing a search for IBM trials. There you can contact the research team directly.

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@slkanowitz

You might have better luck going to the NIH website (clinical trials.gov) and doing a search for IBM trials. There you can contact the research team directly.

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Thanks.Happy NewYear!!!

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@slkanowitz

All lab tests fluctuate some and results can be different between labs, which adds to confusion. Your 1st result of 33 is just above the threshold of what is considered positive and the 2nd result could have been 29 (but considered negative because it is under 30). With 3 labs being abnormal (do you know the other ENA?) and symptoms, there seems to be something going on. In my experience over 40+ years, I see many rheumatologists who dismiss symptoms and positive labs and are reluctant to make a diagnosis. This can mean longer suffering, more pain and possibly damage to organs for lack of treatment. I would seek a second opinion as IMO dsDNA of 33 is significant. Make a thorough list of signs and symptoms, perhaps a diary of those, and gather all labs you have had done before seeing another Dr. PS do you have IBM?

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Thank you so much. I am keeping a photo diary of all of my symptoms, which I did share with my rheum, who today messaged that I had "no evidence of rheumatologic disease." Seven years in the making, my symptoms / labs are:

*dime-size scalp inflammation spots that bleed and bald
*peeling skin on hands
*vibratory uticaria
*recurrent fever
*chronic fatigue
*severe post-exertional malaise
*chronic inflammatory damage to gallbladder, removed
*chronic inflammatory damage to abdominal lymph notes, removed
*butterfly rash
*red, flat, lacy rash on chest and upper thighs
*occasional loss of sensation in finger tips
*gastrointestinal upset
*vertigo / tinnitus / fluid in inner ear without infection
*occurring in very "flare" like patterns following stress or other triggers
*ANA positive (1:160 speckled)
*ENA positive
*dsDNA antibody positive (33 iu/ml)
*occasionally completely normal CBC, CMP, urine tests and GFR
*occasionally very bad CMC, CMP, and GFR
------
Because my ENA was positive but with no association on the extractable nuclear AB panel and my sed rate, CBC, CMP, and C reactive protein are sometimes normal and sometimes not, she won't budge on that there's nothing wrong. In the meantime, I am living in a body that I hardly recognize that gives me a very low quality of life. I am a former D1 athlete and current teacher who rarely missed a day in the classroom and now if I teach too hard one day, I literally cannot work the next. It's absolutely bonkers. After being bounced from specialist to specialist (cardiologist, pulmonologist, neurologist, gastroenterologist, dermatologist, endocrinologist, ENT) for each symptom and having each one tell me that my symptoms are autoimmune, I am at a loss of where to go next because the person they all tell me to go to tells me there's literally nothing wrong (even though she documents photo evidence herself when I'm in the office with her). Thanks for your reply and have a happy new year!

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New to this. Hi all. My ANA titer has fluctuated since 2014. It recently was 1:340. No diagnosis. I don’t know what further testing to request?
My ANA titer was 1:640 after completing my Covid 19 shots.
I was diagnosed with long Covid from the shots. Is it even remotely possible to get long Covid from MRNA vaccines? And, does anyone know what my diagnosis may be with fluctuating levels?

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