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Low B cells + high antinuclear abs

Lalia

Senior Member
Messages
127
Location
Australia
Hi friends

Could someone help me make sense of this and/or let me know if they have a similar pattern...

My last set of blood tests showed low B cells and high antinuclear antibodies (dense fine speckled 1:2560). The antibodies have steadily climbed since I became sick (they were 1:80 this time last year).

My immunology results are copied below. What I don’t understand is how these two test results line up - I though high B cells usually correlate with autoimmunity, because they’re producing the antibodies. I have bacterial and possibly viral infections, which means I need my B cells to be fighting them. My doctor indicated that my limited B cells are busy creating antibodies against my own body instead of dealing with the infections. Has anyone else come across this?

We are now running more tests to try and figure out what the antibodies are attacking.

Immunophenotyping

CD3 (T cell-Total) 74 (range 58 - 84)
CD4 (T Helper cells) 45 (30 - 61)
CD8 (T Suppressor cells) 26 (12 - 45)
CD3+CD4+CD8+ 1
CD3+CD4-CD8- 6
CD19 (B cells) 6 (6 - 22)
CD16+56(NK cells) 19 (6 - 28)
DR 10
CD3+DR+ 1
CD4/CD8 Ratio 1.73 (0.72 - 4.18)
Lymphocytes 1400 x10^6/L (1200 - 4000)
CD3 Absolute Numbers 1036 x10^6/L (805 - 2332)
CD4 Absolute Numbers 630 x10^6/L (457 - 1498)
CD8 Absolute Numbers 364 x10^6/L (205 - 1013)
CD19 Absolute Numbers 84 L x10^6/L (93 - 480)

Comments: CD45/SS Lymphocyte gating: Mild reduction in B cells noted.
 

Lalia

Senior Member
Messages
127
Location
Australia
Wow! Haven't seen anyone saying they have an ANA result that high before.

(Dr) Jonathon Edwards has posted here on PR before to say that an ANA of 1:640 or greater is almost always going to be Lupus.

Hi @kangaSue (are you in Oz?) I’ve read the dense fine speckled pattern is rarely associated with connective tissue disorders (and my understanding is that lupus falls into that category, but please let me know if I’ve misunderstood). Ref: http://www.dhm.com.au/media/22053319/autoantibodies_8pp.dhm_web2016.pdf

We tested ENA and everything came back negative, which was confusing. Now testing intrinsic factor/ parietal cells, ANCA, smooth muscle antibodies, liver/ kidney antibodies (most of my symptoms are gastro/ liver related). I’d like to do more antibody testing in this round of labs, but trying to work out what else to ask for. Learner1 sent me a helpful list, but trying to narrow it down so my doctor doesn’t think I’m nuts. Suggestions welcome!
 

Lalia

Senior Member
Messages
127
Location
Australia
Hey @alex3619 - hope you don’t mind me tagging you, but I’ve just been reading some old posts of yours where you do a really good job of explaining B cell dysfunction. I found your old posts really helpful and wondered if you had any thoughts, or if you could point me to any resources to investigate my question above?

The thread I’m referring to is: https://forums.phoenixrising.me/ind...ituximab-and-cfs-jumping-the-gun.21329/page-7

Thank you for your time!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
wondered if you had any thoughts, or if you could point me to any resources to investigate my question above?
Hi, my knowledge is too general I think, though I can read papers and learn things from them. I have little specific knowledge of ANAs. Sorry. If your doctors are running more tests then it might help to keep posting results here, as there is no telling what might be seen, particularly if lots of patients see the results. Some might have been in a similar position. In addition we are getting more and more medically trained (or allied discipline) members all the time. If the information is here then somebody might be able to say more at some point.

The suggestion that you might like to look at Lupus might be worth pursuing, and your doctors should be able to do that.
 

Gingergrrl

Senior Member
Messages
16,171
Wow! Haven't seen anyone saying they have an ANA result that high before.

I agree, and had told @Lalia that same thing. My ANA was 1:160 which is elevated but not to the strikingly high level of hers at 1:2560. In her case, I cannot imagine a rheumatologist (or any doctor) being able to dismiss it and not test for further autoantibodies. I agree with @alex3619 that there are some very smart members here and to please keep posting your results @Lalia so we can all follow them and learn from what you find out.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
are you in Oz?
Yep.
I’ve read the dense fine speckled pattern is rarely associated with connective tissue disorders (and my understanding is that lupus falls into that category, but please let me know if I’ve misunderstood).
Well there you go, I didn't know there was a dense fine speckled pattern category. I have no expert knowledge here, just recall reading Jonathon Edwards comments. He also suggested doing a dsDNA test too with a high ANA titre.

A quick read on the subject suggests the experts don't know the implications of a DFS pattern either. This paper is clear as mud to me but maybe you make sense of it? I think it's saying you should be tested for anti-DFS70 antibodies;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939145/
We tested ENA and everything came back negative, which was confusing.
This is not unusual, particularly if it involves Sjogren's or Lupus which can take up to ten years or more for antibodies to test positive.

This paper does throw some light on this though where a DSF pattern is concerned. Seems to be more an inflammatory thing not involving a rheumatic condition;
https://www.pathologyjournal.rcpa.edu.au/article/S0031-3025(16)00062-3/pdf
 

Gingergrrl

Senior Member
Messages
16,171
Well there you go, I didn't know there was a dense fine speckled pattern category.

I didn't know about the "dense fine speckled pattern either"! My ANA shows "speckled pattern" but that is as specific as it got.

This is not unusual, particularly if it involves Sjogren's or Lupus which can take up to ten years or more for antibodies to test positive.

Wow, I don't think I realized that it can take up to ten years or more for antibodies to test positive. That is wild.
 

Lalia

Senior Member
Messages
127
Location
Australia
A quick read on the subject suggests the experts don't know the implications of a DFS pattern either. This paper is clear as mud to me but maybe you make sense of it? I think it's saying you should be tested for anti-DFS70 antibodies;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939145/

Seems to be more an inflammatory thing not involving a rheumatic condition;
https://www.pathologyjournal.rcpa.edu.au/article/S0031-3025(16)00062-3/pdf

Yes, you're spot on, the experts still don't understand what the dense fine speckled pattern means. Although it does *appear* to indicate the the patient doesn't have a connective tissue disease. I found this summary helpful: http://www.dhm.com.au/media/22053319/autoantibodies_8pp.dhm_web2016.pdf

Re: the DFS70, I think they do that automatically when the ANA comes back high, because all my tests have DFS70 noted on them.

My doctor mentioned something about the body creating an inflammatory state (with the antibodies) to keep bacterial/ viral infections at bay. Basically the body's way of adapting to the bugs, when it can't mount an immune response to them.

Anyway, we've run Anti-DNA (FEIA), Anti TTG, Anti Gliadin, Thyroglobulin, Thyroid Peroxidase and ENA panel (anti-RNP, anti-SM, anti-SSA, anti-SSB, scl-70, anti-jo-1 etc), all of which came back negative or in-range, which I think rules out lupus (for now at least). Next round is looking at ANCA, smooth muscle, liver/kidney, parietal cell and intrinsic factor.

Also running, CMV, varicella, HHV-6 antibodies, cocksakie/ enterovirus serology - to rule out. EBV EA-R and EA-D to make sure past-EBV infection isn't active. Plus I'm going to ask for more detailed B-cell testing, I don't fully understand it, but I think it's important to know about mature vs naive B cells.

My testing so far shows:
- Genetics, I'm a lewis non-secretor (tendency for infections to stay in the body and become more resistant over time) and have poor detox. capacity (fast phase one, slow phase two, polymorphisms in several CYP SNPS + SOD, NAT and GST SNPs).
- High copper/ low zinc
- Iron looks okay in the blood, but isn't being absorbed
- Sky high B12 w/out supplementation, again isn't being absorbed
- High SHGB, indicates estrogen not being processed
- AST/ ALT fluctuates, sometimes in-range, sometimes mildly out of range
- IGG/ IGA/ IGE and IGG subclasses all on bottom quarter of the range
- Low ACTH and cortisol

Thanks for your feedback, will update when I have my next round of results.
 

Lalia

Senior Member
Messages
127
Location
Australia
Hey @kangaSue - do you know if I wanted to test for autoimmune GI dysmotility, could I test for that via my GP in Oz, or would I have to get a special test from the States? Thank you
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Hey @kangaSue - do you know if I wanted to test for autoimmune GI dysmotility, could I test for that via my GP in Oz, or would I have to get a special test from the States? Thank you
The only really necessary test from that panel that can't be done in Oz is the gAChR (alpha3 nicotonic AChR) Ab test. Major private pathology companies here can arrange for a blood sample to be sent o/s for testing and I was quoted $300 odd to do it 5 years ago. Got it for nicks in the end in seeing a Neurologist as a public hospital patient.

I don't think they do the striated muscle Ab test here either but I don't recall seeing that one occur in anyone having GI dysmotility from enteric antibodies unless they had Myasthenia Gravis (MG) too.

You've had an ANA test already so no need to redo ANN1s again and they usually do GAD65 test with an ANA panel here, or maybe that's just a QLD thing. My GP ordered these and an AChR Antibody test (Muscle nicotinic Acetylcholine Receptor Binding Antibody) which is a standard test (Medicare rebated) for MG and also ordered the N-type VGCC (voltage gated calcium channel) antibody test and VGKC (voltge gated potassium channel) antibody test (no rebates - about $120 each now).

Private pathology Labs might outsource these last two tests to your State Pathology Lab and if that's the case, can often be had for nicks by taking the request form to a public hospital Pathology Dept. I've had a few freeby tests this way, even some imaging tests where there was an out of pocket expense if done privately outside of a public hospital.
 

Lalia

Senior Member
Messages
127
Location
Australia
Private pathology Labs might outsource these last two tests to your State Pathology Lab and if that's the case, can often be had for nicks by taking the request form to a public hospital Pathology Dept. I've had a few freeby tests this way, even some imaging tests where there was an out of pocket expense if done privately outside of a public hospital.

Thanks @kangaSue that rundown is extremely helpful. Can I just turn up to a public hospital with my pathology form to get testing? Or do I have to see a specialist at the hospital and convince them to order the tests? I can’t believe some of the stuff Medicare have charged me for in the past, even when the doc requests bulk billing.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Can I just turn up to a public hospital with my pathology form to get testing? Or do I have to see a specialist at the hospital and convince them to order the tests?
Without naming names, it was a healthcare proffesional who wised me up to this and I've just rocked up to where they do blood tests and hand them the request form.

I have seen specialists at both hospitals where I've done this so do have a patient identification number with them but I don't think it matters as the number wasn't on the request form and the results have always reached my G.P. I think it's the same as with the private mobs nowadays, everyone will take any request form.

These are major Brisbane hospitals though so I don't know how it would go over in a smaller regional hospital. They may have tighter controls over their budgets so be more easily able to hand you a bill.

You would have to see a specialist though (probably Neurologist) to have blood sent o/s to do the gAChR test and would have to have evidence of at least having Autonomic Neuropathy if not POTS.
 

StarChild56

Senior Member
Messages
1,405
Edited cause replying to anyone did not actually make sense, and this may or may not be relevant:

I just thought I'd post here when I had a pos ANA screen, it seems like Lupus would be homogeneous, vs speckled (although I may misunderstand completely), here is a screenshot of my lab (also this was the end of 2013 so perhaps it is already out of date)
upload_2018-6-28_19-29-21.png
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
@Forçe e Honra Your ANA screening looks very different than mine. The lab that did mine considered 1:40 or below to be negative. Mine was 1:160, speckled pattern (and although I researched this more than once, I have already forgotten what the speckled pattern pertains to-- which illnesses, I mean)!
 

StarChild56

Senior Member
Messages
1,405
@Forçe e Honra Your ANA screening looks very different than mine. The lab that did mine considered 1:40 or below to be negative. Mine was 1:160,
speckled pattern (and although I researched this more than once, I have already forgotten what the speckled pattern pertains to-- which illnesses, I mean)!

How odd. My lab was part of the University system (held in high regard). I don't understand why there are these differences, although I have noticed on my millions of labs sometimes it notes that different labs have slight differences in what is in range, or not.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
How odd. My lab was part of the University system (held in high regard). I don't understand why there are these differences, although I have noticed on my millions of labs sometimes it notes that different labs have slight differences in what is in range, or not.
It's common for even healthy people to have an elevated ANA result and it appears that a lot of doctors don't see it to be too much of an issue until or unless you test at 1:160 and above.

ANA alone is not a lot of help as a screening measure on which to base a decision to do more testing when not everyone has an elevated ANA in their pathology.
 

Gingergrrl

Senior Member
Messages
16,171
How odd. My lab was part of the University system (held in high regard). I don't understand why there are these differences, although I have noticed on my millions of labs sometimes it notes that different labs have slight differences in what is in range, or not.

I agree and I don't know why all the labs are so different with the ranges and interpretations. I would assume regardless if yours says 1:40, since it shows a pattern, that it must be positive. The rheumy who ran the test on me in 2016 even tried to tell me that 1:160 could be considered negative which I knew was pure nonsense (and I did not go back to him b/c he was unable to help me).

Edit: KS, I posted before I saw your reply and I agree that ANA alone does not tell you much (vs. positive ANA with multiple autoantibodies and autoimmune symptoms).
 

StarChild56

Senior Member
Messages
1,405
It's common for even healthy people to have an elevated ANA result and it appears that a lot of doctors don't see it to be too much of an issue until or unless you test at 1:160 and above.

ANA alone is not a lot of help as a screening measure on which to base a decision to do more testing when not everyone has an elevated ANA in their pathology.

Yes, my follow ups were negative. However, my PCP felt I was a serum-negative RA patient (I have a lot of very painful arthritis). I've also recently tested positive for several antibodies so it is interesting to me though it may mean nothing that 5 years later - I have a lot of autoimmune issues.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Yes, my follow ups were negative. However, my PCP felt I was a serum-negative RA patient (I have a lot of very painful arthritis). I've also recently tested positive for several antibodies so it is interesting to me though it may mean nothing that 5 years later - I have a lot of autoimmune issues.
Sjogren's and Lupus are notorious for doing a merry dance with your immune system for years before revealing themselves. Worse still with autoimmune conditions is that it's not unusual to have more than one of them at a time.