View Full Version : new with a question- ds dna positive then negative? warning LONG!

02-20-2009, 07:52 AM
i am new here, i lurked for a few weeks til i realized what a great and supportive board this was and i felt so alone yesterday i had to post. this post is going to be long so i want to thank anyone who sticks through this. first an intro, my name is michelle, i am 25 years old and i am married to my soldier, mike. we have two kids, one 3 year old daughter named lily and i am currently 25 weeks pregnant with our son, due in june.

for 6 years no i have had bouts of painful joints, fatigue etc. i have had a facial rash for as long as i remember. i did go to the doctor about this when i was 20, he told me i was overweight (at the time i was) and depressed and he put me on antidepressants. later i was diagnosed as bi polar II though i feel this was a misdiagnosis. i have been off the meds for 4 years and have led a normal psychological life since then. anyways that was the last time i went to a doctor about my issues. a year and a half later, i got pregnant with my daughter. i had a severe subchorionic hemorrhage (bleeding from behind the placenta) for 11 weeks with my daughter. i was on complete bedrest for the first trimester and a half of my pregnancy and it was emotionally devastating.

when i found out i was pregnant in september, my mind went straight back to the nightmare that was the sch. i had been referred out to a civilian perinatologist due to the severity of the last hemorrhage. i had done some research over the internet and there was a strong study on how clotting disorders can cause the sch. so at my first visit i asked my np if she would be willing to do a basic clotting panel assay on me and she was. as an afterthought she decided to test my ana and apa levels. a week later i was in for an u/s and the u/s tech told me that there was an order for more bloodwork and it was for lupus. as soon as i heard that word my heart filled with dread. my great aunt died ultimately from her lupus. towards the end of her life it took her kidneys and blood vessels and she died after an operation for an embolism in her chest. i remember how sick she was and it freaked the crud out of me. anyways, i came to find out my ana titre was 1:320 and it was speckled and that it was concern for perinatologist.

so i went for next slew of bloodwork. when my results came back in my np called and asked if i ever had any of the diagnostic criteria for lupus, and i met 5 out of the 11. she then went over my blood work. my clotting assay was normal, my anti ro and la antibodies normal. my complement levels were normal but my c4 level was on the low side at 20. then when she read my anti ds dna it was a 26 and she stuttered. normal is a ten, mine was almost 3x higher. immediately i was referred out to the ONLY rheumatologist in my area. ironically, my np had seen him in the past for possible ra and she warned me that the appointment was going to be long but thorough.

so i met the rheumatologist after his pa diagnosed me with reynaud's phenomenon and fibromyalgia. i also have osteoarthritis in my knees, hips, hands and elbows. he went over my history and my blood work. i asked him if i had lupus and he told me to prepare myself because i had a positive lupus test. he wasn't too sure about my malar rash, he felt it was acne so i got referred out to a dermatologist who has told me that it was from the acne. he said a malar rash doesn't blanch out (in my research i have read the opposite, it does blanch out because it is essentially a pooling of blood under the skin) i have been treated for the acne for 3 months now, my face is as clear as it's ever been but guess what i still have the malar rash! if the acne was treated wouldn't have the rash went away? i also was diagnosed with tiny spider angiomas (telangiastacias) on my hands and arm.

the second time i went to the rheumatologist he told me that i clinically did not have lupus after he told me i had it, and since i was pregnant he wouldn't put me on anything. he had retested my lupus panel and my c4 level was still on the low end of normal and my anti ds dna was high at a 17. this was in december. he wanted to see me the first week in march and if i felt symptoms he would reorder my bloodwork.

fast foward to the 2nd to last week of january. i started feeling achy and tired. i also had developed several mouth sores, on my gums, cheeks and tongue. the achiness in my joints was so bad that if i crossed my legs i would cry in pain while uncrossing them. i could barely open the screw top on milk, never mind cans etc. i am 25 years old, i wasn't too far long in my pregnancy yet and i knew it wasn't that. i knew this had to be a flare up. one day the first week i felt like this i was vacuuming and all of sudden sweat began pouring out and i felt hot. i ran to the bedroom to take my temperature and it was a 100.5! everyday the pain, fatigue and fever got worse. after almost 2 weeks i was FINALLY able to get in touch with my rheumatologist and all he did was order my bloodwork. and then i waited, and waited some more to get the results. if it wasn't for my np at my perinatologist calling me yesterday i probably would have never recieved them.

last week, i started feeling a bit better. no more fever, my joints were relatively better but my heart out of nowhere would race! last tuesday morning it got so bad i called up my perinatologist and asked what they recommended. they said er so that is where i went. after 5 hours the cardiologist in the er found no structural abnormalities (he didn't do an ecg either) but he said that this type of heart anomaly goes along with the lupus flare i had described. when he called my rheumy to ask if he should rx prednisone he had to YELL at my rheumy to remind him who i was. my rheumy had no clue!

i saw my peri the day after and they redid my blood work because my np didn't like how red my rash was (she wasn't convinced my rash was just acne but she couldn't say much because her speciality is perinatology) she ordered my complete lupus panel.

i got all the results back yesterday for my first round by rheumy ordered the end of january and the round ordered last week. my levels the end of january were normal for c3 at a 135 then a 136. my c4 levels dropped from a 20 to an 18 bringing them borderline low. my peri ordered a ch50 panel which came back super low at a 49 and then my anti ds dna. in january it was a 13 and then it was negative!!!! how could it have been negative after 3 positive tests? and what does that mean for me? i do have to add that the last test was performed at a totally different lab. could this have something to do with it?

i don't have a definitive diagnosis and i was in the process of going back home (nyc) because my parents aren't convinced this rheumy is worth jack after my treatment this past month. they want me to see my aunt's rheumatologist whose specialty is lupus. but ultimately, what the heck does this negative test result mean? is it normal for the test to come back negative after so many positives? are these symptoms all in my head. how can two out of the three complement levels point to a flare but my anti ds dna is normal?!?!

i feel so alone, i was crying my eyes out. and after my less than stellar treatment from my rheumatologist this past month i feel like i am going to get doors slammed in my face from here on out. and how is it my perinatologist and np are more concerned about my "highly possible" lupus then my own rheumatologist?!

i know this was a novel, i have to thank everyone for reading this, any insight, at all would be wonderful. i don't want to feel alone anymore and i know everyone here would understand.

eta- i have also had a 24 hour urine test done because my peri was concerned about me developing pre eclampsia. she wanted a baseline done. my 24 hour urine showed i was spilling 250 mg of urine and i have protein in my urine at every doctor's visit.

Angel Oliver
02-20-2009, 08:06 AM
First of all hello and welcome and many congratulations on being pregnant. Wow you have been through it have 'nt you. Yu are not alone anymore.You will see the many lovely people will come and hug you and give you all the answers you are looking for...just wait and see. Im sending you gentle hugs right now so get ready.............hugs sent :)

I fully understand your frustrations with Doctors. Ive wrote essays on them on here lol :) At first i had M.E then its not, i ve had a breakdown....then its not... i have Lupus and then it s not.....now i have M.E again and many other little ailments.Doctors are not always right. I am a bit bias at the moment and have lost all confidence in them. To the extent that i am trying to get someone to come with me from now on to speak up for me.

If im not wrong, i think it is normal for you to have a negative test come back after all the pOsitive ones you had. There are so many more knowledgeable people here who WILL know for sure all about the blood works, so hang in their and watch those replies flood in for you.

You will feel at home here in no time and will feel a little better now knowing you have somewhere to go and not be judged, but truly loved and helped in what ever you go through from now on. I am glad you joined us. I wish i had more answers. :)

Hope you felt that hug i sent ya.


02-20-2009, 08:18 AM
hi michelle (this is my daughter's middle name)

Welcome to the group. You will be amazed at the knowledge displayed by so many members. I agree with your parents....you should go to ny to see your aunt's rheumy. You are, rightfully so, no comfortable with your present level of care, and you need to have confidence in your dr. ...there are so many questionable characters out there. The dr. in ny will already know some history, and hopefully, will be more compassionate.

Diagnosis can be the most frustrating part of this disease. I tested positive for 13 years before finally getting the diagnosis. Even went to the mayo clinic, and got a fibromyalgia diagnosis even though my ana was hompogeneous and positive.

There are members on this site that have tested positive for years, then had their diagnosis changed....i understand the the tests can vary depending on the level of the flare that you are in. I also know that tests can vary between labs.

Hope you will consider seeing the rheumy in ny....maybe they can recommend someone in your area....at least you will have some confidence in their diagnosis.

best of luck to you, keep us posted.

02-20-2009, 08:38 AM
Go to the rheumy your aunt had! Have they tested your anticardiolipin as well? I am not versed in all the alternate names that tests have but I would be concerned about antiphospholipid syndrome which if I understand is a autoimmune clotting disorder associated with lupus somehow. http://www.apsfa.org/aps.htm here is some information on it..... It can cause the kind of pregnancy issues you have had.

Gather up your records and tell them you need an urgent appt as you are pregnant, etc., with a family history, there is a greater concern than average.

I am praying your pregnancy gets better and you have a wonderful outcome!

02-20-2009, 09:43 AM
Hello Michelle,

I'm Rob, and I was diagnosed with SLE in 2004, and I'm 41 now. I'm sorry to hear you are getting the typical "rheumo runaround". I honestly do not know what is wrong with rheumotologists, as your story is far too typical. You have Lupus, then you don't clinically have Lupus? You meet the diagnostic criteria, you have a family history of Lupus, and they diagnose you then undiagnose you. Typical. Fire that rheumo and go to the new one. I was diagnosed by FOUR separate Dr/Rheumo's with SLE, two of them being the official specialists that work for the Social Security Administration. I was approved for full disability benefits. I have all the diagnostic criteria, family history, constant flares-the works. I saw a new Rheumo last year, after waiting 3 months, only to walk in and have him ask me "What makes you think you have Lupus?". Say what? I explained to him that I was not there for a diagnosis, I was there for treatment. After he made a smart remark to me, I had finally reached the end of my rheumo-rope. I went off on him, fired him in a very public way, it wasn't pretty.

Anyway, long story short, If you think the rheumo doesn't have a clue, find another one. There seems to be severe lack of even marginal rheumo's out there. I'm going to refrain from making any comments about your specific test results, as I'm not really qualified, and even if I was, brain fog sometimes makes things confusing for me.

I just wanted to say hello, and welcome you to our group. Please make yourself at home.


02-20-2009, 06:13 PM
I to am new to this group but had to post when I read your post. Hang in there gal and please know that you are not alone going thru this. I too was young when I first came down with lupus symptoms...first it was my thyroid and total bed rest with my first child. I too had a placenta issue and it was horrible. You worry the whole time you are pregnant. But when I became pregnant with my second child I had the same issue and knew this isn't normal...I felt awful with the second pregnancy. I couldn't eat or even move from pain in joints....Doctors kept saying it was old injuries from my bad horse accidents that I had...yeah right! My lupus screamed loudly when I was pregnant. I had my first malar rash when pregnant and you know no one even noticed. Well family did but not one doc. So after having my child and then getting worse...my foot blew out. I had a large bone cyst in my foot and they did surgery. Foot doc...informed me you have a bad autoimmune disorder!!! Well that started the long road that I am on...I have been told you have lupus...you have Psoratic arthritis ...you have RA. Then start all over again. I have 9 of the eleven criteria at any given time but they go with the blood work that changes all the time. Sometimes it is positive and other times neg. Drives me nuts.
So hang in there...and know that you are not alone. I too have two natural beautiful children and they are healthy and grown. Just take care of yourself as best as possible right now....HUGS!

02-20-2009, 08:59 PM
Hi Michelle,

My name is Faith and I have Lupus, Fibro, anti-phospholipid antibody syndrome, etc. I would go see a doctor in New York; a specialist who has Lupus patients. I was leaking protein at a rate of 113mg on a 24 hour, and my specialist told me not to worry about it as long as it was under 500 mg. Have you had your blood pressure checked? Also, the labs should be sent to Specialty Labs, Rheumatology Diagnoist Laboratory, Mayo Clinic Laboratories, Scripps Clinic Laboratories as they can be different.

I would get a copy of all medical records before you visit your aunt's specialist in New York and take them with you. I am praying your pregnancy gets better and a specialist will ease your mind with the correct diagnosis. I would also suggest a book by Daniel J. Wallace called "Lupus A Guide for Patients and Their Families." You can find it in your local library or on used book online stores.

If at all possible, check into private insurance if you can afford it; because once you are diagnosed with Lupus, you will no longer be able to get insurance on your own unless you live in a state that supplments high risk medical insurance at a very high price. I wish I had known this prior to diagnosis.

Take care and keep us updated,


02-20-2009, 09:38 PM
Hi!! Congrats on the pregnancy! It sounds like your chuggin along the smart way! Have you been able to see the baby in an untra sound yet? Boy?? Girl?? How exciting!

Yes, your ds-dna test can be negative (falsely negative) It can also be falsely positive. What does that mean to you? It means that you do not have a positive ds-dna result from whatever laboratory took your blood last. It could be lab error, it could be your pregnancy, it could be a number of things.
Try not to get hung up on the fact that your ds-dna results went from positive to negative and negative to positive while you're preggers. What other blood tests results were abnormal?.

Do you have a copy of all of your lab results? Request copies be mailed or handed to you everytime the results come in. Does it it look like there have been significant changes during your pregnancy from prior lab results? You don't need to be a medical health care professional to read your lab results, just to interpret them. The lab tells the medical professional whether or not the lab result is within range and the medical professional attempts to tell you what it all means...

YOu may never get a definitive Lupus diagnosis - a lot of people never do get a definitive Lupus diagnosis.

Pregnancy does whacky things to your body as it is. Stay on top of your bloodwork and see if there is anything that can be done re: joint pain. Did your osteoarthritis get diagnosed using films? Or did someone just look at your knees and guess?

You do need to keep that kidney thing in check. It sounds like you're on top of getting your kidney function monitored just stay persistent on that. Don't be afraid to go to the hospital if your intuition goes off.

Yes, your ds-dna can go from positive to negative and vice versa. During pregnancy, anything can happen.

Disclaimer: I'm not a health care professional and obviously not qualified to give medical advice.

sick n tired
02-20-2009, 09:47 PM
Hey Michelle,

I agree that you need to go to your Aunties Rheumotologist. It is amazing how many Rheumy's are Arrogant jerks. Many have had the you have lupus no you don't have it diagnosis.
I also agree with Faith about insurance. Sometimes it is a blessing in disguise to not be dx'd until you can get insurance...of course the blessing is short lived, because it seems that it is said to be all in the head...

02-21-2009, 07:57 AM
i wanted to thank everyone individually for their responses. alot of you posed questions that i want to respond to to clarify my post. i know it was a whole mess of history i gave and it was alot. i apologize. i appreciate the support i received and i feel like i am on the road to knowing what exactly my body is doing with everyone's support!

angel- thank you so much for your wonderful, warm response. it must be part pregnancy hormones part relief but i appreciated your supportive response and i cried my eyes out.

mountaindreamer- i think ia m on a long road that you spoke of. i am definitely going to ny. my parents are getting me the tickets on thursday for next week.

kukukajoo- i have already tested my lac and acl antibodies. this is what led led me on this road. they came back normal and i don't have aps. i have heard lupus alone can damage the placenta since it's the maternal/fetal barrier.

rob- thanks for the welcome and thanks for reiterating how important seeing a new doctor is. i never thought this process was going to become as hard as it is.

tishka- being pregnant with this has been hard. everyone has told me that pregnancy lessens the lupus symptoms. yea right. thanks for the feedback, it was what i needed.

faith- the rheumy i see sees only lupus patients. he has 30 years teaching/practicing experience in the lupus speciality. his name is dr. beinenstock, has offices on the upper east side and in brooklyn. anyways, i have leaked protein my whole entire pregnancy but my bp has always been normal, sometimes borderline low. when i had my 24 hour urine they told me not worry since it wasn't over 300 (borderline for pre-eclampsia). it was 250 and normal is 150mg in a day. the possible kidney involvement hits it close to home because of my aunt. i can't imagine how much damage a body can take til it gives up. anyways, dh is active duty army and an iraqi war veteran. he also is about to commission (become an officer) and he plans on being a career man. so i am not worried about the health insurance aspect. once he retires we will have health insurance to the day we die. if we were in the private sector i would be more worried then us being military.

justomegirlindallas- i am having a boy! i am excited because our famiy is complete and since a boy, i am assuming, is going to be different then having my girl. anyways i have only had my anti- ds dna done while pregnant so i don't know what it looks like otherwise. :lol: i was 7 weeks pregnant when my rheumy gave me the news of my lupus. i had my three prior labs done at quest and this past lab done at my peri's medical center's lab. i am more inclined to think it was the different lab. also, of course i googled what it could mean and i have read during flares there are cases of neg ant-ds dna results because the ds dna is going after the kidneys and it is getting peed out. with my protein levels etc i am only inclined to assume this is a fair possibility. ultimately i won't know til i see this doctor since i am not a doctor either. the two labs that came back abnormal were my complement levels: my c4 at 18 (borderline) and my at 49 -super low. my perinatologist is inclined to think it was a flare while my rheumy has never called me back :angry:

sick and tired: you are right with the assumption that it is all in the head. that is enough to anger me and frustrate me because it makes me question whether i am being a hypochondriac (which i am not!) i have a life insurance policy with the us army for 100k but my bank sent me term policy offer for a great rate since i am turning 26 on march 13th. i am considering buying into it knowing that once i have this diagnosis, if i get it, i will never get life insurance and i want to protect my children and husband in the even i die untimely. so you are right about the blessing in disguise.

i want to thank you all again! you have all made me feel welcome and i appreciate it!

Angel Oliver
02-21-2009, 08:06 AM
Ah i am so glad we all managed to help you if only a little. Just a warning though. If you visit the arcade here......you will get addicted lol:)

You now enjoy all the places in here and have some fun.You know we all here for you and little baby boy inside....ahhhhh. :)

Love and gentle hugs (not the ones that make you cry though)

02-21-2009, 10:13 AM
Wow I am sorry you are dealing with this! I understand how miserable it is to be in limbo with a diagnosis and then to have the fatigue and knwo that you are so young but feel so much older than your age.

Sending you gentle hugs and hope that the new rheumy can help you. Sometimes you have to weed ethrough the meanies to get to the good ones. Giving you lots of support here!

02-24-2009, 01:34 AM

In regards to your question..positive then negative anti- double strand dna...yes, you can have a positive and then a negative and both can be accurate. It is said, thought to be decreases in anti-double-stranded DNA levels are associated with concurrent flares...

And too...a decreased or negative anti-ds.dna or ANA doesn't mean you are not in a flare..ah, the madness.

A positive test is only part of the evidence, a tool not the whole diagnose of Lupus...even though the anti-ds DNA is one of the most specific auto antibodies in Lupus...

So...it is imortant to us to have a diagnose for our sanity it isn;t necessary for treatment. Know, they should always treat your symptoms. Are you on Plaquenil?

Getting a diagnose is a maddening trip. Keep looking for a doctor that matches with you..that you feel good with. My doctor here...ah, I would leave him if I could.

Your primary, even your NP can prescribe the drugs...

I know it gets discouraging, but take a deep breath and have another go at it. You are worth it...

Keep looking for your wellness, Michelle...hope today is a better day...


02-24-2009, 06:18 AM
I am also new to this site. my test were positive for three years and the last one was negative. from what my doc says and what i have learned from other people that can happen. my doc thinks it has to do when your in a flare she not sure but has seen it also.

i think you should change doc asap. the one thing i had to do was that. it took me a hospital my aunts to finally go see someone else my gp just didn't know what she was talking about. neither did the gi doc, he did tell me to see a reumy which i did who refered me to and internist which i love. once you find a doc you like the better you will feel good luck and just remeber you woke up today and thats a good thing.