Hard question about labs from Mayo

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/18/2008 4:51 PM (GMT -7)   
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.
 
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/18/2008 6:45 PM (GMT -7)   
Hi Marji, Boy I have no clue about labs. I'm glad the plaq. is helping your fingers though. That's good news. Most of my test come back normal. other than a 1:2560 ana and sometimes I have anemia. The lowest my ANA ever was is 1:1230 or something like that. That was one time. Hopfully someone has some answers for ya. Or a link that explains this stuff. I've been coming here since 06 and I've learned a lot. Unfortunately I still don't know anything. Thisis the dog goneest disease I have ever seen. Don't you just yearn for some kind of simple mumps and chicken pox or somthing?
love ya
carol
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
 
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/18/2008 6:56 PM (GMT -7)   
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.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/18/2008 7:22 PM (GMT -7)   
Hi Marji . . . some meds DO help push the anti-bodies towards negative. I think others here have posted that once they started on the meds, their numbers were down sometimes.

I can't speak up for myself at the doctor's either. So I always wright a note about my current symptoms and I do spend a LOT of time trying to word it just right so the doc can understand. I am able to give him my paper with my list of current meds, current symptoms, what is better, what is worse and any questions. He then uses my typed paper to write his notes on and he puts it in my file. He also answers any questions. *phewwwww* It really takes the stress off during my doctor visits. My GI just took my paper and stuck it in the file. But, I wonder if she read it later?? I still got lots of help from her and I had my own copy of the paper to refer to so, if I needed to, I could just read from the paper. *sigh* I'm way to shy at the doctor visits.

Keep us posted!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/18/2008 8:05 PM (GMT -7)   
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.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


doodlebee
Regular Member


Date Joined Mar 2008
Total Posts : 60
   Posted 5/18/2008 9:56 PM (GMT -7)   
I also had low but negative numbers on most of the ENA antibodies (anti-SM, SSA, SSB, Jo1, RNA, histone, etc.) and wasn't sure if that meant anything (meant to ask my doc last time but of course forgot). I figured it's probably like ANA – they can be present but not considered abnormal unless they're over a certain number.

The only difference I know of between dsDNA and ssDNA is that dsDNA is very specific for lupus. My lab report didn't differentiate the two. It just said "anti-DNA" and didn't give any numbers but just said negative.

Well I know I'm not much help, but I hope you get the answers you need soon. Glad the Plaquenil is helping you. :)
~ Bee

God is the strength of my heart! - Psalm 73:26


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/18/2008 11:34 PM (GMT -7)   

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.


Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


KAnne1989
New Member


Date Joined Nov 2007
Total Posts : 16
   Posted 5/20/2008 4:53 AM (GMT -7)   
From what I understand, many blood tests used to indicate autoimmune diseases can vary back and forth from neg to positive to elevated....I have 6 indicators of lupus but have not been diagnosed yet because the rheumatologists seem to think "no ANA, no lupus." Geniuses...they're sending me to Mayo in Jacksonville, so this intrigues me. Which Mayo Clinic did you go to...??
"Whatever life brings,I've been through everything
And now I'm on my knees
Hoping
But I know I must go on
Although I hurt I must be strong
Because inside I know that many feel this way...."
- "Don't Stop Dancing" Creed
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/20/2008 5:10 AM (GMT -7)   
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.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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