Diagnosis--possible lupus

[calli66]

Just got blood test results yesterday, and I'm still digesting this information. My ANA and Rheumatoid A results are WAY positive. The doctor said he thought it was "textbook" lupus. I'm not so sure, based on some information I've found on the internet. Seems like further tests are needed. Maybe it's Sjogren's.

The doctor said I "definitely" have some sort of collagen vascular disease. Great. That does explain why I have dry eyes. But I don't have dry mouth, and have no other symptoms. The only reason they did the ANA tests was because my complete blood counts have been showing low white blood count and low platelet count. I've been nervous about this for weeks, and I guess it helps "a bit" to narrow down the cause to auto-immune problems.

I'll try to get a referral to a rheumatologist as soon as possible---I need some more information and testing, I think. The whole thing is feeling pretty weird at this point.

Just needed the support of my friends here at the Dry Eye Zone.

Calli

[Rebecca Petris]

((((Calli))))

Wow. Wow wow wow. I'm sorry... And I wish I knew more about auto-immune diseases but I just don't. I hope a rheumatologist can shed some more light. Diagnosis of these things just seems so shaky sometimes. I'll be holding out hope that they're wrong until we hear more. Keep us posted. I am sure there are several people here with lupus... maybe they've got ideas to share.

[Silverlady]

Ouchie, ouchie

Calli,
I just would like to hug you. What a fiasco. But if they find the answer, then you have an answer and can get appropriate treatment. I have rheumatoid arthritis and Sjogren's. They both can cause dry eyes. Either one alone or both together. Sometimes Rheumatoid is the primary disease and Sjogren's decides to join the party. And Lupus can be the same way.

I hope you get your answer soon and yes..a rheumatologist is the way to go. I'd get all my test reports so that the tests that have already been run don't have to be repeated. {{{Good luck to you.}}}}

Billye

[calli66]

Thanks, everybody.

Calli

[Rojzen]

labels; leading edge docs; traces

Dear Calli66 - - I just wanted to send a hug, and to say that pinning down autoimmune disease, or even that there IS real autoimmune disease, sometimes remains a vague and convoluted process. . .This can be good news, though. When my severe dry eye set in, I was tested for the testable diseases, after my ANA came up HUGELY high. . .My family practitioner told me he was CERTAIN I had lupus. . .but then tests for antibodies to double-stranded ANA, then the gold std. for lupus diagnosis, were negative. .Sjogren's tests were positive, but low enough to be inconclusive. . .and so after 3 rheumatologists, an endocrinologist, and a neurologist all weighed in, I came away with the Dx of "nonspecific autoimmune disease, with sicca and fibromyalgia." After that, I recovered from the malaise that started it all, fever went away, and only my eye problem remained. . .All the initial systemic stuff could return some day, but who knows? As of today, my ANA is on the low side, but I don't get it tested anymore, except by accident, since ANA says very little about any particular condition.

Even a positive lupus test does not say much about how illness will or won't manifest. . .Possibly RA is easier to confirm and project . . .Anyway, try, if possible, to remain inquisitive, even after a doctor says your case is "textbook." Keep digging, and, though I'm hesitant to suggest costly directions, consider finding a rheumatologist who is REALLY leading edge. . .

I sense you are going to be AOK. . .

In meantime, if you're like me, you will always suspect that some missing trace nutrient or toxin plays some role, in these difficult autoimmune conditions. . .At the moment, I am trying a course of low-dose Lithium Aspartate, and after 3 weeks on this fascinating trace supplement, essentially all my fibromyalgia pain has disappeared. . .Time will tell. . .

[calli66]

Rojzen-

I REALLY appreciate your comments and insight. I don't know if they tested for double-stranded ANA, but the results had a "speckle pattern" and a titer number (high). The lab report says the pattern is a general indicator of Smith and RNP antigens (is ribonucleic acid single or double?).

I hope I can get a good doctor---I don't know how many there are in my HMO network. I want a doctor who will look at my whole medical history and not just base everything on the lab test numbers.

I can really relate to your reasoning--that there is Something Missing, like a trace element, that can help. My own suspicion is that whatever I have, I've had it for a long time--maybe more than 25 years. I had traveled in foreign countries and had gotten dysentery and parasites in my twenties, and my body changed from being 'normal' to having major food sensitivities. With the onset of menopause, my dry eyes got worse, as did my digestive problems. and I verge on being hypothyroid.

I have to stay positive about this, and keep on reminding myself that I have my dry eye symptoms under control, have recently gotten my digestive problems worked out, too--- and I feel OK.

Thanks for the vote of AOK support!

Calli

[dianat]

Calli66,

My best to you. I know nothing about autoimmune disorders, but I can certainly sympathize. In the days when I even suspected such a thing for myself I was terribly nervous.

Do let us know what you find out when you see the rheumatologist.

Diana

[Rojzen]

the relevant tests; the missing links (incl. Nicholson tests)

Calli -- If any of us can lend any insights, or spark any new inquiries, we are all absolutely honored to be able to do so. . .

I am not well-enough educated, at the moment, to make sense of the test results you describe, but I can say that when I finally found a great rheumatologist, he explained that the test for antibodies against double-stranded DNA (and RNA is single-stranded) made sense for lupus (and possibly other autoimmune diseases) because it signified, if positive, that the body was producing antibodies not against viruses (which, I believe, are RNA structures with shells), but, rather, against native body cells, which, other than unfertilized eggs and sperm, contain double-stranded DNA, as a rule. . .This is grossly oversimplified, I fear, even as the layperson's explanation given me by my own doc. . .but possibly it explains, in part, why the particular test was prevalent, at least back in 1998, when I first got sick. . .I also recall that some other autoimmune diseases had their own fairly dispositive tests. . .such as one for scleroderma, I think. . .In any case, I suspect that testing is even better now than when I first became ill. . .

But re: "first getting sick": I find it fascinating that you had a parasite infestation that seemed to leave you changed afterwards. . .I had a variety of chronic fatigue-type ailments before my first known GI infection. . .but I did then once have a devastating case of campylobacter, which left my GI tract severely dysfunctional for a long time, after which I started getting a variety of new diagnoses, over coming years, including a previously undetected, fairly pronounced mitral valve prolapse, osteoarthritis, colon problems, etc. Given the severity of the campylobacter episode, I couldn't help but wonder whether it had changed me forever. . .

When I first got DES, I came across lots of literature about the Nicholson testing protocols that were being used for soldiers with Gulf War Syndrome. ..Nicholson was a biochemist, I think, whose daughter returned from the first Gulf War very will. . .He ultimately isolated some peculiar bacteria in her system. . .and after treating these with very prolonged and high doses of antibiotics in the tetracycline family, like minocycline, he seemed to get a remission for her and for many other similarly situated veterans. . .

Today, there are a few docs who still don't believe in autoimmune disease at all. . .Like Dr. Mirkin of Maryland, who once had a radio show. . .I saw him for a while. . .He treats EVERYTHING with antibiotics. . .and sometimes he gets amazing results. . .He claims to have cured his wife of RA by prescribing minocycline. . .I think he likes to try anti-virals, too, when he deems these appropriate. . .Alas, there are not too many of those around. . .

I am concerned that HMO docs may not have the freedom really to ponder and explore a person's case. . .If you are stuck with the HMO, could you possibly specifically ask for a double-time slot on the schedule, for a consultation in which there is time for real talk about what your tests are for, and how they are interpreted?

[Natalie06]

Calli

I am also not very educated on auto-immune diseases but having dealt with endometriosis for 20 years, a very poorly understood disease, I can relate to what you are going through and send you prayers, positive thoughts and strength.

Natalie

[calli66]

Again, thanks to everyone for your support.

Rojzen--the explanation you wrote about the dsDNA and RNA really made a lot of sense to me---just what I needed.

There seem to be 8 rheumatologists listed in my HMO, so yesterday I "googled" all of them to see what I could learn. But--it's so hard to glean any info other than just the general stuff. One is the chief of the Rheum clinic, another is a researcher who speaks Russian, one is a woman from India, another came from a competing health insurance network, one is Hispanic, one does research into the neuro-psychiatric aspects of lupus, and the seventh is about 75 years old and specializes in Rheumatoid A.

As you can see, I spent quite some time on the computer yesterday! I'm going to ask my GP to do some asking around FOR me, and see if she can get anywhere.

I will try to schedule a "double" appointment with the Rheum.--that's a good plan. Sometimes I wonder really how much time the doctors spend studying one's chart. They breeze into the examining room--and out--I'm sure they've looked at the test results, but maybe that's it.

The Lupus Foundation website stresses that a good diagnostician ALWAYS considers the personal and medical history as much as the lab results.

I realize this is off-topic for dry eye talk, but I don't have any other group that I feel close to right now, so I'm sticking with you guys.

Thanks.

Calli

[Rojzen]

my best rheumatologist

Hi, again, Callie - -So glad you are hitting the net, and sizing up the various docs available through your plan. Indeed, a good doc MUST know your history and your current symptoms fully, before pasting a label on the situation. Wanted to chime in, here, that the best rheumatologist I ever saw actually came from a population that is particularly hard hit by lupus: she was a young, African-American woman, who practices and teaches at Howard University Medical School/Center. She saw SLE patients daily, knew the disease intimately, and was hugely enthusiastic about proper diagnosis and successful treatment. (I was, by the way, an idiot, for not following this doc's recommendations for the fibromyalgia she diagnosed. . .I would have felt better faster. . .but I was preoccupied with the eyes, at the time. . ) As with dry eye, some of the best researcher/clinicians themselves suffer from the disease in question, or come from a population that is affected heavily by it. . .Possibly a woman physician, at the very least, would get you closer to that target, if this is of interest. . .

[calli66]

Diagnosis Update: lupus

Everybody,

My regular doctor called me yesterday--she had been on vacation and had just looked over my lab results from the Hematologist. She told me she thought it was a bit ridiculous of the doctor to tell me I had lupus just based on the elevated ANA test. She also said my Rheumatoid Factor test wasn't "that high." So she wants me to come in for more tests, and to go over my medical history and symptoms. Then she'll refer me to a specialist of the right sort.

So, I'm feeling quite a bit better. I feel like my doctor is looking at this in a more practical way. And it gives me hope that maybe I DON'T have lupus. At least now, I'm not so scared.

Calli

[Lucy]

Good luck, Calli, in figuring out the puzzle! The autoimmune stuff is not the thing to have if you want a "quick and solid" diagnosis. It helps hearing things that make sense to you. Sometimes docs can really be off the wall on this. Or far from the wall is maybe a better description. Let us know how you're doing from time to time.
Lucy

[calli66]

Update on poss. lupus Dx-maybe not?

Hey everybody,

Since I first posted, I've gotten a few more tests done, and my regular doctor thinks it's more likely that I have Sjogren's. So maybe it's not lupus. I go to see a Rheumatologist in 3 weeks--somebody to look over all the test results and see where to go next. Got the SS-A, SS-B antibodies, and thyroglobulin antibody, and, and.....

I'm feeling more positive now than I did when I first started this thread. Just joined the Sjogren's World forum---seems like a lot of relevant info there for me. As they say, "Knowledge is Power."

But my right eye is WRECKED this week! What the heck! Back to using Blepharide ointment and Lotemax for a few days--trying to cool things out. I had been "experimenting" with foregoing the warm washcloth compresses twice a day, and it was OK for 2 weeks, but now maybe I'm "paying." But why just ONE eye?

Ah, the Mysteries.

Calli

[Lucy]

Hi Calli-
I love the Sjogren's World forum almost as much as I "love DEZ." I didn't know much when I went over there about a year ago, but it's very educational and members are helpful and compassionate.

From one Sjoggie to(maybe) another--Lucy