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Leelee
01-20-2011, 06:45 AM
This is my first post and I am so glad to have found this forum!

My first Rheumy appt is on Monday, but before then I have a couple of questions I need help with.

My ANA is positive and my Smith Antibodies are positive too, but not by much. They are 1.3 (flagged high by LabCorp) and the range is 0.0 - 0.9. Since they are barely high does that mean anything? Might I not have Lupus?

I have been sick for years and after treating Lyme, Bartonella and Babesia for almost two years I still have a lot of symptoms so my doctor started looking for other causes. Lupus is one of them. All the symptoms "fit" but ironically she told me I did not have it. She thinks Lyme is still the main culprit.

My other question is about Anti-DNA (DS) AB Qn. The result was 3. The range for negative is less than 5. I wonder if my teeny bit of a result might indicate Lupus anyway.

Any advice or thoughts will be most welcome.

Thank you!

tgal
01-20-2011, 09:38 AM
Hi Leelee! Welcome to WHL. We are very glad that you found us. The questions that you ask are difficult to answer because there really is not test for Lupus. To get a Lupus diagnosis they look at your history and labs. Most likely your rhuemy will do another set of test and one of them will break down the ANA to get more information. He will also want a detailed history of your medical issues. As you are finding out Lupus mimics so many other diseases they have to cross those out before they can move on to a possible AI issue.

One more thing you need to know is that Lupus (and the other AI diseases) can take months or years to diagnose. Sadly you are going through what so many of us go through but we will be here as you travel down this path

I wish I could help more but I am glad that you found us. Welcome to the WHL Family!

Leelee
01-20-2011, 12:02 PM
Thank you tgal. I was afraid this was going to be a long process.

If after you first see a rheumy and no diagnosis is immediately forthcoming, does the doctor usually indicate one should follow up with him? Or does a person have to start all over trying to find another doctor?

I am so concerned about how all this works. Sadly, I went from doctor to doctor for years before I could anyone to even test me for Lyme. I am terrified this is how it works with rheumys too.

SandyR
01-20-2011, 02:19 PM
Welcome! Lyme was the first disease my previous doc thought I had. Then he suggested Lupus and like you I have the symptoms but not the proper diagnosis. That was about 5 or 6 years ago now and after finally getting sick and tired of being sick and tired about 2 years ago I really started looking for my answer and realized how hard it is to get one nailed down and how far back in my medical history I could really track being sick (15 years or so) without really realizing the pattern. It's hard to get diagnosed properly and it's frustrating, but if it took me 15 years to begin to see a pattern to how and when and how long I get sick I know it's not so easy for the docs. So far I've been told I have IBS, Diabetes, Psoriasis with Psoriatic Arthritis, Raynaud's, Rosacea, MCTD and Sarcoidosis. At different times I have been told one disease is really just symptoms of one of the others and that they are all related or not related depending on which doctor I talk to. I have bounced around from the PCP to the Gastroenterologist, Dermatologist, Chiropractor, Allergist, ENT, Rheumatologist, Cardiologist, and Optometrist as my symptoms have come and gone. I have also moved from NY to PA, VA and back to NY again since first getting sick. I've also gone from extrmemly active to almost completely inactive and back and forth depending on my health at any moment. My point is, each of us has a different journey to diagnosis. Many of us aren't even "officially" diagnosed yet and unfortunately, there is no standard path to the answer you are looking for or set pattern or routine for how to go about finding it. In this game you need to be your own coach, top player, cheerleader, teacher, disciplinarian and reward doler. Thankfully the people here are very good at helping you fufill these roles but you have to fight for you. I'm not going to lie and say it's going to be easy. There will be times you just want to break down and cry or throw things at the wall but we're here for you then too b/c we have gone through that too. A lot of this is based on instinct and gut feeling. If you don't like this rhuemy, find another one. One thing I have learned through this - that fancy degree your doctor has is just a piece of paper with words. You are the true expert on your body so if that doc isn't working, fire them and find another and always, ALWAYS, keep a copy of all of your medical records to take with you on your appts.

Sandy

Leelee
01-20-2011, 02:31 PM
Oh Sandy, I am so sorry you have struggled so long. I appreciate your candor. Looks like I have a long road ahead of me (still).

tgal
01-20-2011, 03:00 PM
I really can't add anything to what Sandy said. It is a long fight but yes, you do have to fight for yourself. The best advice I was ever given here was "the doctors work for you. You hired them and you can fire them too". Make them listen! If they refuse then go find one that will! Until then we will be here for you

mystiejm
01-20-2011, 03:16 PM
I have smith antibodies also. My rheumy told me that they are HIGHLY specific for SLE. I found it really interesting and have done some research on it, that I have seen only a few cases have been reported with other diseases(there may be more but that is all I saw). I know that anti-dna had a 90% chance that it is lupus and the anit smith is even higher. I also read that anti smith is no help in determiming disease activty just helps secure a diagnosis. Also, anti smith is one of the 11 diagnosis criteria(in the same category as DS-dna). Hopefully, since your blood work is showing abnormalitites, it wont take your docs too long to figure it all out. I have had lupus symptoms for 7 years and just recently did any significant abnormalities show up.
God bless, Mary.

tgal
01-20-2011, 03:35 PM
Just to clarify what mystie just said... there are 11 criteria but you do not have to have all 11 in order to be diagnosed. You only need 4 of the criteria and the doctor needs to be able to put all of that together with your history. Susie explains it perfectly in the "Newly Diagnosed" section which I am linking below.

http://forum.wehavelupus.com/showthread.php?2592-Criteria-for-Lupus-Diagnosis

Leelee
01-20-2011, 03:56 PM
It is all so complicated but this forum has given me a wealth of information. I had no idea what Lupus was until a couple of weeks ago. No doctor had ever tested my ANA and I had never considered Lupus as my problem.

But now, there isn't much doubt in mind that is my problem. I guess like everyone else here I wish the diagnois was quicker and more accurate.

Leelee
01-20-2011, 04:01 PM
Wow! Over a 90% chance of being Lupus! It would be such a relief to have this diagnosis. Not that I want to have SLE, but on the other hand I do want to have it so my life will make some sense.

I am 54 and have struggled since I was a teenager with versions and intensities of the same symptoms. Finally two years ago I was ready to give up. Really. It had gotten so bad I didn't care to go on. Slowly I came out of that darkness, but am ever fearful of returning.

Everyone on this forum is helpful and positive. I am grateful for all the support.

tgal
01-20-2011, 04:09 PM
Here is what Lupus.org has to say about the anti smith test. It is some really good information and explains what mysie said in a bit more detail

I had a positive anti-smith antibody test a couple of years ago. I was told that everyone with lupus does not always have this positive test, but everyone with a positive anti-smith antibody has lupus. Is this true? -- Holland, MI

A positive Smith antibody by itself does not mean that a person has lupus. An anti-Smith antibody is one of the important antibodies in lupus, but not everybody with this antibody has or will develop lupus. Whereas the antinuclear antibody is fairly nonspecific, anti-double-stranded DNA antibodies and anti-Smith antibodies more consistently indicate a person has lupus. Sjögren’s A antibodies and ribonuclear protein antibodies are also seen commonly in systemic lupus erythematosus patients. However, a positive lab test is not the same as having the clinical features of lupus. A clinical diagnosis depends on meeting the criteria set up to diagnose the disease. If the symptoms and objective signs and lab findings, including the antibody profile, match up, lupus can be diagnosed with some certainty. Lupus can also be diagnosed on the basis of a biopsy, such as of the skin or kidney. But a positive Smith antibody by itself does not mean that a person has lupus. You can read more about Diagnosing Lupus on lupus.org.

SandyR
01-20-2011, 05:31 PM
I'm glad you found us too. No one should have to feel lost and alone and helpless from a part of their health they can't control and don't understand. Many of us on here have struggled with depression from health struggles/diagnosis frustrations too. There are multiple threads on the subject you can find if you enter depression in the search box on the top right of the home screen.
I feel very fortunate that my road hasn't been as bumpy as others. As frustrating as it is I am so grateful it isn't as bad as it can be. Stick around here - you'll get a lot of inspiration and assistance here.

magistramarla
01-20-2011, 07:49 PM
Hi Leelee,
Welcome to WHL! I'm about your age - 53, and I have much the same dx as Sandy - MCTD. The advice that you have gotten here is right. If you are very lucky, you will have a rheumy who will start treating you for the symptoms, rather than getting hung up in the lab reports. Many folks can be sero-negative (never have positive labs), but still benefit greatly from treatment.
Keep looking for that great rheumy that you "click" with. I had one in Texas, then moved, and now I have a not-so-good one. I'm about to fire her and go to one at a teaching hospital.
Good luck, and keep in touch,
Hugs,
Marla

musick2myears
01-26-2011, 10:36 AM
Hi Leelee,
I have always had positive antibodies, but a lot of people do, which is why unfortunately some doctors will write them off as nothing. My titers tend to fluctuate and increase as my symptoms do, but everyone is different.
I was in remission for a very long time and "it's back" so I am going through my own dark period, I found this site the day the doctor confirmed that I'm in a flare and the people on this site have been so welcoming and warm that its helping me as I try to work through it.

I've had a few rheumatologist and I have to say I agree with Maria, you need to find one you like, and in my experience the ones at the teaching hospitals are better, I feel like they listen more and will work to find out what is wrong with you and how to treat it.
Best of Luck to you