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Honestly..what do you think?

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Old 05-01-2009, 05:47 AM   #1
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Honestly..what do you think?

Hi! I am new here...I am a 34 yr old mom of two! My sister was dx with Lupus in September. She had bad arthritis, photo sensitivity, mouth sores, stomach problems, rashes, etc....blood work....

I am a TOTAL hypochondriac so I went to my dr and asked to have my ANA tested (dumb). It was 1:40 (which is kind of neg...kind of pos???) My anti DS DNA was >300!!!!!! I was like, "what?"....I have no symptoms - at all! So my dr told me to stop "looking for a problem". Anyway, over the last 6 months, I keep getting my bloodwork done. The only tests that EVER come up pos are the ANA and Anti DS DNA. All the Ro, La, Anti SM are all neg. My generic bloodwork, urine, sed rate, c reactive protein, etc...are all normal...not even borderline.

The only symptoms I have ever had have been tingling in arms, ear ringing, mild vertigo (sometimes) and anxiety. I asked my Rheum about CNS Lupus and he said that was more like seizures, stroke, confusion, etc... I had an MRI which did show a small non specific lesion. When they re-did the MRI with contrast, it DID NOT light up (or something) indicating, it was "old"....not MS related....or autoimmune.

So, my other sister is convinced I have Lyme??? I live near the woods, have a dog (who gets ticks), etc... She told me that her husband tested pos once for these antibodies but actually had Lyme...not Lupus. My Dr. said that was possible and has referred me to infectious disease. He also said that some family members of those with Lupus can show antibodies but never develop the disease. My sister sees Dr. Lahita and he told her the same thing.

What do you guys think?


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Old 05-01-2009, 11:51 AM   #2
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Re: Honestly..what do you think?

I'd listen to your Dr and stop looking for something to be wrong. I have pretty much all the symptoms of Lupus, have had them for a long time; along with high ANA there was no doubt the fist visit with my Rheumy that I had Lupus. That is just one of the problems I have. The symptoms you have are probably from worrying about something you probably don't have. If it was Lyme disease you would have a lot more symptoms, and don't go reading about, you say you are a hypochondriac well reading about something before you know you have it will probably send your brain into overdrive and next thing you know you have more symptoms. When my general Dr suggested a few different things I waited until I went to my Rheumy and let him decide what is wrong. Then I researched Lupus.

Old 05-16-2009, 06:43 AM   #3
Angel MJ
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Wink Re: Honestly..what do you think?

hi jenny nj ... welcome to the boards.
meant to write to you a few days ago but have been going somewhat *mental* but i think i need to as the last response was somewhat 'unkind' ...
i think it is rational and normal to be concerned ... don't be bogged down by the what if's ... you are healthy so embrace it & don't worry yourself sick!

i think your sister is going to need you now as you are the strong one and she has this rocky ride ahead but doesn't have to do it alone ... support can get us all thru the darkest days!

dx lupus is symptoms based (in a nutshell) you need 4 out of 11 criteria ... so read the sticky posts and keep your eye on things ... here i mention (again) my favourite author Dr Daniel J Wallace, The Lupus Book. get hold of a copy ... library/bookstore (vee has another author that is also good)
there is a section on family and lupus, it is possible for positive lupus patients that have siblings with positive ANA but never develop symptoms ... i would recomend reading this book as it can help you understand your sister's road ... the invisible illness ... even let her read it ... it helps me understand things (had my copy for 6 years and still learning)

your sister is lucky to have you ... you came here for whatever reason but you are here and she has you! please send her my strength and tell her how suprised she will be when she starts realizing how many fellow lupies there are out here, there, all over! there are also loads of places for people dealing with people dealing with lupus ... Hang in there!

Old 05-16-2009, 08:36 AM   #4
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Re: Honestly..what do you think?

Hi, JennyNJ. The other lupus hardcover I read, other than Dr. Daniel Wallace's, is by Dr. Robert Lahita. (You mentioned a "Dr. Lahita" in your post...?) In his hardcover, Dr. Wallace writes that anti-ds-DNA is "rarely present" in people who do not have lupus. But he quickly qualifies this with the statement, "Occasionally, healthy patients have low-level positive tests."

His chapter titled "Is It Really Lupus?" may be especially interesting to you.

Has your rheumie quantified how high an anti-ds-DNA of > 300 is? A lot high? Or only slightly elevated?

Dr. Wallace also notes that anti-ds-DNA tests are very tricky to do reliably. Do you know if the lab doing your tests is one favored by rheumatologists?

Are your BUN and creatine levels also normal?

In your shoes, to be honest? I'd find it impossible NOT to wonder, even without obvious symptoms. You know, you could ask if lab results can precede the onset of more tangible symptoms; and if the answer is NO, then maybe you could kick back, relax a lot (or a little), and let things be, unless something changes. (Easier said than done, I know!)

I hope nothing more evolves for you & I hope your big sis is doing well. Hang in there & take good care, Vee

Old 05-17-2009, 09:28 AM   #5
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Re: Honestly..what do you think?

Hi! In response to the last few messages.... I saw another Rheum who did more bloodwork. The ant ds dna is still >300 BUT the ANA is 1:40 (which he considered to be negative) All other tests were normal or negative. Kidney tests, both blood and urine were normal. My sed rate was a 7 (low) c-reactive protein normal. Ro and La were negative. The blood clotting tests were all negative... the other "lupus" tests were negative (anti smith and rnp??) My compliments were all normal.

So..... I have read that family members can carry the antibody and my Dr. feels at this time, that is whats going on...HOWEVER, I did have 1 positive band on the Western Blot show up (for Lyme) and with the "small non specific white matter lesion" on the brain....and the ds dna I am really beginning to wonder if this is tick related. From what I hear and read.....that can explain all of this. I don't want to be in denial I will have to just see.

Any thoughts?

Old 05-20-2009, 06:33 AM   #6
Angel MJ
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Re: Honestly..what do you think?

hi jennynj - firstly ***phew*** thank goodness for you!
really glad that there are so many negative results - i alway try be positive but then in thiscase negative is great.
i'd suggest keeping a journal with any symptoms you have and keep an eye on it ... how is your sister doing?

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