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    Old 08-31-2014, 02:37 PM   #1
    Complement
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    Good Complements?

    Before starting with my questions and concerns about my daughterís condition, I would like to thank all the wonderful people on this board who helped me learn by posting their questions and concerns about lupus. My deep appreciation goes to VeeJ and Ladybud who have been tirelessly helping everybody for so long with their wealth of information and with such kindness.

    One month ago my 31 year old daughter developed a sudden onset of multiple joint pains (fingers, wrists, shoulders, knees, and ankles) that was worse in the morning. She felt fatigue on some days but no other symptoms. After a few days (with some relief with a couple of Aleves a day) we saw our PCP. He prescribed Mobic (15 mg/d) for pain and ordered a bunch of tests.
    The first set of blood tests included CBC (all normal except slightly low Hgb and Hct), Metabolic panel (all good except slightly high protein), inflammatory markers ( high ESR,69, high CRP,1.8) ANA (high, 1:320, nucleated), TSH (normal), RF (negative), pro time and INR (both normal). Urinalysis result was good except some RBC (5-10 hpf), and few squamos cells. Hand x-ray was normal.

    Given the high ESR, CRP, ANA, and mild anemia, the PCP immediately ordered a second set of blood tests which showed high ds-dna (20, normal range 0-4) and normal/negative results for Pro Time, INR, APTT, anti-SS-A, anti-SS-B, anti-Jo-1, anti-Scl-70, anti-CCP, anti-Centromere B, C3, and C4. The third set of tests immediately followed and showed mild iron and vit. D deficiency, positive anti-RNP, slightly prolonged DRVVT (43 sec, normal range 29-40) with borderline (1.2) ratio, and normal/negative results for anti-Sm, anti-SM/RNP, anti-Histone IgG, anti-TPO, TSH, and vitamin B12. Our PCP talked about the results pointing to an autoimmune disease but did not give a specific diagnosis and referred us to a rheumatologist whom we will see in a few days.

    Here are my questions and concerns and I would really appreciate it if I can have some feedback. 1) Reading good sources of information on the internet, including this very helpful board, I am almost certain that this must be lupus. Any thoughts on that? 2) Although BUN and creatinine level were good and there was no protein in urine, but with the high level of ds-dna and evidence of hematuria (urine cast not done yet), Iím concerned about kidneys and wonder what should we expect the rheumy to do immediately? 3) Is there any positive value in having good complement levels (C3, C4) in this picture? 5) Most probably the rheumy will prescribe Plaquinil but I wonder if anything else should be prescribed under such circumstances? 6) I see that some rheumys give prescription for prednisone on an as needed basis, but how much and for how long and is this advisable? Sorry for such a long first post! Thank you.

     
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    Old 09-01-2014, 04:21 AM   #2
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    Re: Good Complements?

    Hi. I'm only a (dumb) patient, so please read with a big grain of salt.

    1. Only a rheum can know if this is lupus... and even then, probably not during her first appt. I doubt the lab values listed are enough, without further qualification (some examples follow). Also, only specialized rheumatology labs are really equipped to run these tests well. Some things that stand out to me in your post:
    (a) For anti-ds-DNA, I don't recognize that reference range (not that you should trust MY take ). Most specialty labs use IU/ml; and for that, one online source calls < 30 negative, 30-75 borderline, and > 75 positive. So I think a lot rides on how high this value really is---plus, I bet he'll retest.
    (b) For +anti-RNP, do you know the range? Question (a) above becomes very important here, because anti-RNP *in the absence of* the other AB's possible in lupus is the very definition of Mixed Connective Tissue Disorder (MCTD).
    (c) For sed rate, do you know the range? I ask b/c 60 might be very high. But many things can elevate ESR, incl. infection and AI's other than lupus.

    2. RBC's in urine can be caused by things other than glomerulonephritis, for example, kidney or bladder infection, stones, kidney injury, certain meds, exercise, other kidney conditions, etc. Since BUN and creatinine are normal (presumably serum albumin isn't depressed, since you didn't cite it) and there's no protein in urine, I don't know whether a rheum would call for a 24-hour urine collection or kidney biopsy at this juncture. (But 24-hour urine collection detects other things, too, like stones, so perhaps he'll call for it?)

    3. Normal complement values only mean (I think) that this particular criteria for SLE hasn't been met. But since you generally (but not always) only need to fulfill 4 or more, a person could have lupus without meeting this one.

    (5) Plaquenil is the DOC for non-organ threatening lupus (and some other AI's too), where there's no major organ involvement. But I wouldn't expect any meds to be prescribed yet, pending further findings and proof. Same goes for #6, Prednisone, except that it's sometimes prescribed in low dosage to address inflammation---but even then, typically only AFTER the rheum has had sufficient time for his own labs, a physical evaluation, a lifetime medical history, etc., and ruled out the other possibilities suggested by labs.

    But honestly, I'd want the rheum's evaluation to be "by the book" and "from scratch", not just an automatic acceptance of ONE possible interpretation of her previous labs. The specialist who dx'ed me called for new labs, also made me get my 3rd (ow!) skin biopsy, even though I'd had decades of symptoms and abnormal labs, also 8 years of skin rashes... because he needed to be sure, for which I respected him totally. So I hope her rheum goes by the book, also explains his decisions on doing (or not doing) certain things now. I'm really looking forward to hearing about her appt. and I wish her luck (and you, too, of course). Sending you both my best, Vee

     
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    Old 09-01-2014, 06:37 AM   #3
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    Re: Good Complements?

    The only thing I can really chime in on is the dsdna. Sounds like your lab does the same values mine does (under 4 negative, 5-9 interdeterminate, 10+ positive - max reading 300). Of all the reading I've done, this ref range is **possibly** with a new method thats auto done by a laser setup by bioplex. I cannot for the life of me find out the sensitivity or specificity or if it can accidentally bind with ssdna like the ELISA test.

    20 although outside of the standard deviations is probably a positive, but its not insanely high. Anything with a positive value will read high on labwork.
    Your rheum will probably retest, they almost never trust another labs work. Because of all the methods of testing dsdna now, its highly possible that you will show positive in one method, but not in another. This happened to me with dsdna with 2 different tests by 3 different labs(2 positives, 1 negative) and that leaves me more confused.

    Complement levels are looked at in the whole picture and are watched for drops. The standard range is sort of wonky from my understanding, unless the reading is very very low during the first tests.. So a complement reading thats low could be normal for one person, or a complement reading inside normal could be low for the next person. So these are retested and followed for drops/rises.

     
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    Old 09-01-2014, 07:40 AM   #4
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    Re: Good Complements?

    Alicakes, what you just wrote about the (fairly new) "bioplex" anti-ds-DNA testing method is extremely interesting! I just saw articles suggesting that it's both highly sensitive and highly specific---but alas, nothing on how its findings apply vis-a-vis the ACR criterion for anti-ds-DNA. i.e., how high it must be to be counted as fulfilling that criterion.

    Complement, I'd never read about the "bioplex" methodology until today! I really hope you'll share how the rheum interprets its result, also whether he (she?) also runs one of the older method tests, to get a nose-to-nose comparison---and etc. I hope he or she is one of those chattier types who actually explain their thinking, always a huge plus on an initial consult. Again, good luck!

     
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    Old 09-01-2014, 10:30 AM   #5
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    Re: Good Complements?

    Im not sure if the complements were by bioplex, just the dsdna test I know for sure was for me in at least one instance, maybe two.

    From my limited understanding yet tons of reading, the bioplex was calibrated to work like the ELISA for WHO levels. so less than 4IU/ml is about equivalent to less than 30... 5-9 = 30-50... 10+ IU/ml = over 50IU/ml and anything outside of the standard deviation of 1-2 units is significant or not false positive. *head spinning*

    My current rheumy is not yet board certified and in training. He's harsh, doesnt explain much, has trouble reading his own tests and calls everything false positives... So I'm seeing someone else in a few weeks with more experience. Hopefully he can shed some light.

     
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    Old 09-01-2014, 01:32 PM   #6
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    Re: Good Complements?

    I just submitted a reply but I don't see it being posted. What have I done wrong? I'm submitting this to test if it gets posted. Sorry, I'm a newbie!

     
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    Old 09-01-2014, 04:18 PM   #7
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    Re: Good Complements?

    Vee, thank you for answering my questions in detail, and also thank you Alicat for adding your helpful information about anti-ds-dna tests and complements.

    1. I agree that only a rheumy can give a lupus diagnosis but I thought with a strong positive anti-ANA and anti-ds-DNA (plus multiple joint pain along with mild anemia) then diagnosis of lupus is kind of certain. In terms of rheumys accepting only special labs to do the testing, I thought the test already done by the PCP would be acceptable because both of them are in the same medical complex and would probably use the same lab, but maybe not?. (a) The anti-ds-DNA result only shows the normal range being 0.0-4.0 U/ml but does not provide any more categories. Alicat, according to the Bioplex categories you provided, and as you said, her value of 20 is not insanely high but it is a strong positive. But still the rheumy could order that to be done with a different method to be sure. (b) For the anti-RNP, it says positive and the value is 4.6 but does not provide the normal range. And again, just like anti-ds-dna, the interpretation and normal range varies between labs. In an older post in 2011, a normal was defined as less than 1.0. (c) Yes, her sed rate of 69 is quite high as the normal range is 0-20. Infection as a possible cause for high sed rate could be unlikely as she is not showing any signs of infection. I must add that she has had silicone breast implants since two years ago, but I doubt it that it has anything to do with her current condition?!

    2. Can RBC in urine be caused by things other than GN in the face of no related symptoms? And the test was done two days after the end of her period, so contamination could not be a factor. Yes BUN and creatinine were both good (10 and 0.6) and albumin was a little low (4.0) but still within the normal range (3.5-5.0). I donít know how reliable the dipstick urine test is for protein?

    3. My question regarding the complement level was mainly in terms of any prognostic value. With high anti-ds-dna and hematuria, I wondered if having a good level of complements means anything? I thought if kidneys are already affected, the complements would be low, but maybe not now and it will decline with time? But as Alicat said, maybe whatís important is not the absolute value in one point in time, but its trend over time?

    I do hope that the rheumy we are seeing in a few days is very competent (and going by the book!) and a chatty one, as I have a lot of questions. Alicat I also hope that you find your new rheumy very competent and approachable. I will definitely keep you posted. Thanks again.

     
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    Old 09-01-2014, 06:58 PM   #8
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    Re: Good Complements?

    Alicake, I'm sorry for misspelling your username (not alicat!). Thanks again for your input.

     
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    Old 09-02-2014, 02:03 AM   #9
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    Re: Good Complements?

    Complement, SLE is dx'ed using 11 "classification criteria" pre-established by the American College of Rheumatology (ACR). You may find them in the "sticky posts" (permanent info posts)*, located above the user threads. Generally (but not always) you must meet 4 or more of the 11 for a dx of systemic lupus. They need not present simultaneously, btw; instead, envision checking each off in *indelible ink* once it's fulfilled.

    *The "stickies" are pretty abbreviated. You could find fuller explanations of the criteria in hardcovers, etc. Complicating matters, a newer set of ACR criteria is being test-driven by some rheums, but this newer (and wordier) version doesn't seem to have been accepted by the ACR & maybe never will be.

    Below, I kept my focus on only several criteria, the ones you've alluded to. In my (patient's) mind, some 64k questions might be---

    (a) IS ANA high enough to be counted? (With the older tests, weak positives aren't counted, like 1:40 or 1:80. I've seen articles and books in which doctors cite various levels---1:320, 1:640, or 1:1280---as countable. Problem is, the new "multiplex" tests described by Alicake use a different scale. But the concept is the same, I bet: what is a "weak positive" vs. "positive" vs. "strong positive"? Also note that things other than an AI disease can cause a positive ANA, presumably in the lower range of numbers, e.g., viral or bacterial infection, family tendency, age, etc.

    (b) Is anti-ds-DNA high enough to be counted? Same concept as above, meaning what level counts...? Also, you'll note that only several AB's "make" the ACR list: anti-ds-DNA, anti-Sm, antiphospholipid, lupus anti-coagulant, and false-positive syphilis test. Certain "fuzzier" antibodies are possible and likely add some weight although not creating a checkmark, e.g., anti-ribosomal P, antineuronal, anti-RNP, anti-Ro, anti-La, etc. (You could find a full listing of AB's elsewhere.)

    (c) Is "kidney disorder" present? Note this is defined as PROTEIN or ABNORMAL SEDIMENT. (RBC isn't the same as protein & isn't a criterion).

    (d) Will arthritis be counted? (Other causes must be ruled out, like Lyme as one example... I think.)

    Some criteria have thresholds and/or special embedded meanings. For example, under "blood abnormalities", hemolytic anemia is the form of anemia created by premature destruction of RBCís (from the disease or from an antibody targeting RBCís); and it has thresholds (but I don't know them).

    Also, many symptoms that don't make the list are extremely common in lupus but arenít "specific" enough to be listed because there are so many other causes for them (elevated ESR is a good example).

    RBC in urine. RBC isn't a criteria. RBC may be caused by many things, like kidney or bladder infection, stones, kidney injury, certain meds, exercise, other kidney conditions, etc. Re: the part of your question about dipstick vs. urinalysis, I think a dipstick test can detect protein (which IS a criteria) but not casts (which are also a criteria)Ö and that she needs urinalysis (urinalysis is both more complete and more reliable).

    Bottom line on the kidney criteria: a person can have lupus without having "kidney involvement"... or any "major organ involvement" for that matter (major organs being defined as kidney, brain, heart, lungs, etc.) But having lupus doesn't rule out getting other kidney problems like stones, infections & the like. (I have lupus without kidney involvement; and I have kidney stones as a separate issue.)

    Complement levels. Per my hardcover, these are 28 plasma proteins whose interactions kill bacteria and clear away immune complexes. During inflammation, they decrease, and low levels can suggest that lupus is active. As for prognostic value, I think it's like many (probably most) of these criteria: they can rise and fall as flares come and go. Blood labs & urinalysis are only snapshots in time trying to trap lupus, a roller coaster...

    Just give a yell if above isn't what you were after or doesn't make enough sense. I hope others correct and/or add more.

    As I said, I can't even guess if a doctor will call this lupus, or "lupus in the making", or "we need to recheck her down the road", or... I only wanted to convey some of the nuances buried in the criteria. In that any somewhat elevated ANA and anti-ds-DNA put lupus on the radar, in her shoes I'd definitely want fully evaluated and to get myself well-established with a rheum. Some rheums (the chatty ones who seek to educate) explain which criteria you've met & why, also which you haven't & why. Others are Delphic oracles, uttering pronouncements with no explanations (I found that type horrible). So if you encounter the Delphic type, just ask really good questions! (Here we're pretty good at helping people formulate those.)

    I think you're making great inroads on the critical concepts. When is her appointment? Looking forward to updates. Sending hugs to you both, Vee

    P.S. I also misspelled "Alicake", sorry.
    P.P.S. I once read an article by a world-famous British rheum in which he said (I paraphrase) that any 'ole doctor can diagnose lupus in the presence of really high ANA and anti-ds-DNA, palpable malar rash, and lupus nephritis proven by biopsy. Well, no wonder: those are "classic" criteria & suggest a serious degree of lupus. It's all those MILDER cases that present the real diagnostic challenge, he added.

     
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    Old 09-02-2014, 03:43 AM   #10
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    Re: Good Complements?

    P.S. Another thought. In the "sticky" with the classification criteria, if you scroll down, you'll see a list of so-called "alternative criteria". These are things very often seen earlier in life in those who later develop lupus. When the rheum takes your daughter's lifetime medical history (which he definitely should do), your daughter could mention all that apply. Doctors who really "get" lupus will ask about these things even if you don't bring them up.

     
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    Old 09-02-2014, 04:25 AM   #11
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    Re: Good Complements?

    Dont feel bad about the name mispell!

    VeeJ is right. I meet 4+ of 11 criteria including positive ANA, DSDNA, arthritis & malar rash, but since dsdna is close to complements level and not "off the chart" I have no diagnosis and no treatment still.

    With anything in the urine, I think they'd retest to look for more abnormalities before doing 24/hr catch or biopsy. It may have been a contamination.

    The multiplex machines tend not to pick up ANA below 1:160, they can, but not usually. My doc didnt follow up the ANA with a IFA titer, but some might.

    Also like VeeJ said, theres grey areas.. UCTD, pre lupus, MCTD, etc... A good rheum will at the very least watch and see and some will treat conservatively in the meantime.

     
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    Old 09-02-2014, 09:17 AM   #12
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    Re: Good Complements?

    Welcome, and I'll chime in. In fact, I wrote a lengthy response to you 20 minutes after you posted your first post, and unfortunately, it never posted. So I'll try again. Your daughter's PCP should be commended, first of all, for a doing a more thorough work-up than most do, which will give the rheum a lot to work with. Diagnosing lupus comes from a combination of the gestalt of labs and signs and symptoms, and is really a judgment call made by the Dr. This area of medicine is particularly difficult because of all the overlaps in symptoms and labs with other disorders, and no one, or rarely, presents with a textbook case. The criteria are guidelines, not hard fast lines, and some Drs use them more or less depending on their experience and preference. So it is common for one Dr to say one has lupus and another to say not. Frustrating to say the least, but that is the reality. In your daughter's case, she has several, significant symptoms and labs that point in that direction. Sed rate of 69 is considerably high, ANA of 1:320 is meaningful, not borderline, anti-dsDNA of 20 with an upper limit of 4 is significant, etc. Her blood in urine could have been from her period ending a couple of days ago, so I would not be overly worried about that but a full urinalysis with microscopic exam should be done again, looking for cells, casts, crystals (related to stones), not just a dipstick. Normal complement levels just mean she is not exhibiting all of the signs that can be present. Placquenil is the first line drug, and may be prescribed initially with Prednisone. Placquenil takes 3-4 months to get full effect and Prednisone works in 1-2 days to give relief of symptoms, so they can be good together initially, but Prednisone is fraught with side effects for long term use, so best to taper off as Placquenil starts working. There are still some stones the rheum can turn over as far as tests, but her PCP got a very good start. I know how hard it is to see your child, even as an adult, going thru something like this. I hope it gets identified quickly and she feels better soon.

     
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    Old 09-02-2014, 10:29 PM   #13
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    Re: Good Complements?

    Vee, Alicake, Ladybud, thank you all for your very helpful comments/inputs.

    Vee, thanks for bringing my attention to the issue of the degree of ďpositivenessĒ in regards to the level of anti-ANA and anti-ds-DNA. I understand that blood in urine by itself is not a criteria but the reason for my concern was the high level of ant-ds-DNA which made me think that maybe kidney is already involved. Hopefully rheumy will order another urinalysis to also include test for cast so that we know better what is going on. I have to say that I just assumed the urine test was done with a dipstick, but I could be wrong, as in the urinalysis result, blood 50 Ery/uL, RBC of 5-10 hpf, and few squamous epithelial cells were reported and I think those canít be by dipstick?! Your comments on complements are helpful. Again I assumed that IF this is lupus, and IF this is a flare, then why complements are not low? But as Ladybud said, she is just not exhibiting that sign, not yet! I looked at the list of alternative criteria and didn't find anything that would apply to her. So weíll see what rheumy makes out of all this, and I really hope she is not one of those Delphic types!! I will report back.

    Alicake, Iím sorry that despite meeting 4+ criteria, you still donít have a diagnosis and treatment in place, and I hope the new rheumy will handle it much better. But I didnít quite get it what you meant by ďsince dsdna is close to complements level and not "off the chart" I have no diagnosis and no treatment still.Ē You mean both were high, or both were low? You could be right that the RBC in urine could have been a contamination, that was PCPís answer when I asked him about it, he didnít seem to be alarmed by it, but weíll see what the rheumy will do with that.

    Ladybud, thanks for chiming in and helping me get it! First Iím sorry that you also put the time and typed your response but it didn't get posted, but I have to say that it made me feel a little better that maybe the reason mine didn't get posted was not because I was stupid, since it happened to the expert too!! Iím glad you tried again and posted because you (and Vee, and Alicake) are opening my eyes to all the intricacies that goes with lupus diagnosis. I tell you, I read a lot and the information available on the net is limitless, but what I learn on this board, I canít learn anywhere else. So thanks again. I agree with you that our PCP should be commended for his thorough examination and work up and giving us so much information, all in a matter of 10 days, and I told him that, because by reading this board I realized unfortunately that has not been the case for so many. I just hope that rheumy will prescribe Plaquenil to help her with the joint pain. Except early in the morning, when she wakes up with stiffness and more pain from lack of movement, she is relatively OK during the day (taking Mobic 15 mg/d). So I wonder if she should be given Prednisone, given the side effects? Would a low does of Prednisone be helpful? Yes it is hard as a mother to watch this, especially when you donít know what path it could take. Thanks again.

     
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    Old 09-03-2014, 01:49 AM   #14
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    Re: Good Complements?

    Complement, a person with lupus doesn't ever "have to" meet additional criteria, meaning they aren't pre-ordained. I'm sure there are a few patients who meet all 11 during the course of illness, but I believe they're by far the exceptions---thus complements may NEVER go low, plus lupus meds act to disrupt such things. In the same vein, if you borrowed hardcovers, you'd find literally hundreds of symptoms and complications possible, yet many of us will experience only a limited number.

    Similarly, nephritis isn't a "given" either, even in the presence of anti-ds-DNA. Certain lab values & urinalysis values (BUN and creatinine in blood labs, protein or casts in urine) are better flags than the AB, also certain symptoms like swelling. For sure, nephritis must be kept on the radar, but I wouldn't assume at this juncture that it's present or even lurking. (I confess it was the first thing that came to my mind when I was told lupus was a possibility, but I scanned several hardcovers and reviewed my lab values, and therefore felt far calmer as I headed out to meet my second rheum.)

    Another powerful concept: lupus (if this turns out to be) ranges widely, from mild ("subacute", meaning no major organ involvement) onward. It's not a death sentence. Almost all patients live full lifespans. It's a continuum on which many patients are kept mild-to-moderate, given modern meds & doctors, regular checkups, compliance, etc. Also, lupus is diagnosed only when a rheum is sure, and you actually WANT that caution. No doctor should EVER prescribe meds that modify (Plaquenil) or flat-out suppress (steroids or immunosuppresants) the immune system without being sure.

    So although worry is unavoidable (what mom wouldn't be?), please know that things could actually turn out better than you now fear. BTW, my hat is off to you for absorbing so much so fast. You get my vote for super-mom! Looking forward to more, hugs, Vee

     
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    Old 09-03-2014, 04:41 AM   #15
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    Re: Good Complements?

    Im sorry, sometimes my typing gets cut off. What I meant was my DSDNA isnt off the charts (two different labs a couple weeks apart, one was 18 IU/ml, one was 15 IU/ml with the same ref range) and my complements are reported within normal range. So that, in my opinion, is good news and confusing.
    Im glad it means I'm not at high risk for being severely sick if I have lupus. But then, Im nervous...will I get treatment, will they figure it out, is it this or that, is it even possibly lyme causing all my pain. All these things run through my head. So i know exactly where you & your daughter are coming from right now.

     
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