Hard question about labs from Mayo

Hi--

I got my labs from Mayo and I'm really glad they did my labs and ordered the right things it seems.  They are much more sensitive than what the regular labs are.

The question I have is that I have the following antibodies present, in my blood:

ss-dna antibody, ELISA 41

ANA mildly elevated

SSA/RO 0.2

SSB/RO < 0.2

Ab Liver/Kidney Microsome Ty 1 1.5

Antismooth Muscle Antibody NEG

Phospholipid Ab IgM serum < 4.0

Phospholipid Ab IgG serum  < 4.0

Cytoplasmic neutrophil p-ANCA POS

AMA/M2 < 0.1

All of these levels (except the P-ANCA) fall below what would be considered a positive reaction, but are present, though not in high enough quantity to be considered positive by current standards. Except for the Antismooth Muscle Antibody which was clearly negative, all the rest are marked with a special mark and listed below, I guess as something to watch.

My question is, isn't the fact that I have these antibodies at all a sign that I have, or did have, or may be developing full-blown autoimmune disease?

I'm just wondering because my family has asked and it seems odd that one was clearly NEG while the others were not clearly negative, just low.

It makes me wonder about people with negative labs, who may have these antibodies, but not in high enough quantity to be considered a positive result at the time tested.

I also wondered what ss-DNA is vs. ds-DNA and what the difference is in terms of illness.

Hopefully this will help my doctors to see that something is happening.  I also wonder if the plaquenil and pred tapers are the reasons why these might be low but present since all my inflammatory markers right now are in the normal ranges, which is great.

Thanks for any help you can give. Also, the doc recommended I up my plaquenil back to 400 a day for the stiff skin in the hand and finger and it already seems to helping some, though my forearm is shot. Anyone who wonders if it's worth a try, it's been over a year and its finally really working and it does make a great difference in some people.

Love to you all.

 

Yeah, and when you try to describe it, you feel like a puppy in a circle being told to pee in the corner. How do you say, I just feel like crap! That p-ANCA I found out is a pretty positive marker for autoimmune hepatitis, but is also positive for other stuff, but maybe at least I'll get them to do my liver biopsy. It's odd, wanting one of those when I know its going to hurt so bad. I'm still recovering from the nerve torture they did to my arm. I told them my arm and shoulder were in horrible pain and to lift them made me cry and they confirmed that. So what do they do? Stick needles through the muscles into the nerves and shoot electricity through them for about two hours. If my arm wasn't sore before, it is now. I swear, the people who do those tests must love to hurt people.

Well, I think my rheumie here will take the results to heart more. It confirms what he suspects, and the whole thing might just be coming into full bloom.

I will. I'm hoping someone with medical experience or similar experience with low but "negative" labs will post. I guess this is why Mayo gets the big bucks and has such a high success rate! I sure hope I don't have all those things, but I feel like I do, so in a way, it is comforting that its not just in my head.

My personal non-medical feeling is that there must be some value to reporting the low but negative numbers besides the word NEGATIVE, which some did come up as, hence the reason Mayo reports them. I'm hoping my rheumatologist will see them and know I may have a tendency to develop these problems if my immune system gets bad again.  They mentioned something about ssDNA being indicative of SLE.  I always thought dsDNA. Anyway, I've found that while some antibodies are normal for people to have in small quantities due to vaccines and things, none of these are normal to have. 

I just wonder how many of us who suffer and have negative tests really have positive, just low results, and what that means. Hopefully someone more in the know will post.  I would ask the doc, I asked mine. My endo said that my high antibodies to my thyroid were important, even more so than my TSH and T4, which are often normal, though I have obvious signs of illness that are helped with treatment and the treatment causes my antibodies to go down. Many endos would not treat me based on antibodies and physical symptoms alone. I did get a thryriod scan done and it showed clearly the disease, so it is confirmed and the amount of damage obvious to them. So I guess tests and the majority of "good" docs can be wrong.

Well, let me know what your doc says and I will do the same.

I went to Mayo Jacksonville and saw a rheumatologist, Dr. Perselin. It sounds like the tests there might help you too. I talked to my endo and she said that the presence of these particular antibodies are abnormal, and the fact they are too low to score a positive result in most labs is a sign that I'm in remission right now, since my inflammatory stuff is low too now.

The other thing I like is that they tested me for ss-DNA not just ds-DNA, I don't know the difference other than one is single stranded dna and the other is double stranded. Both are indicative of lupus.

The rheumatologist there has only said I have fibro and then reluctantly agreed with my local rheumie that I have sjogrens. I know my local rheumie will take this more seriously if the Mayo one doesn't. I haven't gotten my last appointment and end result yet, and they may order more tests now. I don't know. I came through liver transplant, not rheumatology.

I have read in all the stuff I looked at for these tests that ANA does not have to be positive and that these antibodies can be present when there is no ANA. But then they go on to say that the ANA is the predictor between lupus and other stuff like PBC. Let me know how it goes. I have to go back tomorrow and Friday. I may be done after that, I don't know.