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Butterfly News Issue 4


Welcome to issue 4 of Butterfly News. We now have well over 200 subscribers!

Summer has arrived early here in the North West of England, although it probably won't last! Don't forget to apply your sunscreen whenever you are outdoors, even if it is cloudy! Shar Phoenix has again written the article for this issue, and I'd like to say a big thank you to Shar for providing the articles for Butterfly News.

* The Diagnostic Dilemma
* Correction to Butterfly News Issue 3


The Diagnostic Dilemma

Often, long before we know we have Lupus, we're aware that something unusual and unpleasant is happening within our bodies. But the process of diagnosis can be so long and frustrating that we may fear we'll never get an accurate answer and unfortunately, sometimes we don't. If you keep a journal, please be sure to share it with your doctor, having him or her enter the information you offer into your medical record, in your presence. Then, in your journal and in front of the doctor, note the date and time that he/she has entered that information into your record. This is often the only way we can be sure that our input will be saved.

Without such precautions, our doctors may fail to consider our symptoms as valid disease indicators, prolonging our ordeal and depriving us of medical services which could ease our pain and other symptoms. Journals are such effective health monitoring tools that presiding judges can accept them as evidence in claims for U.S. Social Security insurance. Our journals validate our experience; they're powerful tools in our struggle to arrive at diagnosis and to retain that diagnosis, no matter whether our doctors or their opinions may change.

Often, we're told that our symptoms do not indicate Lupus, simply because they don't fit a particular doctor's definition of SLE. Some doctors are so convinced that they're correct that they won't even consider our symptoms, do a physical or run blood tests. If insurance payment of our medical bills hinges on diagnosis, our coverage may be disallowed, making our already challenging lives more difficult. Then, when we connect to the internet and the worldwide Lupus Community, meeting more people with SLE, we find that our symptoms are common to many Lupies including some who've been met with the same damaging response.

Despite numerous qualifying symptoms and persistent effort, many people struggle for years without diagnosis and proper treatment. If they do have untreated SLE, pain and physical damage may increase as the disease progresses and some will be more likely to develop multi-organ involvement. If their SLE continues unabated, some will die, of unverified symptoms, some by intensely pain-driven suicide, having been denied the diagnosis and care that could have spared them. If some actually don't have SLE but have a related syndrome, accurate diagnosis is just as urgent. No one should be abandoned to wander the medical wilderness without answers, in pain and alone.

Granted, we must rely on proficient medical researchers to crack the Lupus code but if we accept compliant co-dependent relationships with our doctors, we effectively surrender our will. To protect ourselves during the diagnostic dilemma it's to our benefit to learn the base criteria for SLE diagnosis, the types of tests involved, their reliability and implications.

There is a base of eleven established criteria for SLE, which include photosensitivity, discoid rash, malar (otherwise known as the "butterfly" rash which appears across the face), arthritis and it's accompanying joint swelling, changes in blood chemistry, immunological changes, inflammation of the heart or lungs, mouth sores, neurological problems, kidney problems and abnormal titre of antinuclear antibody (ANA). In the antinuclear antibody test, titers represent a scale of values which are assumed to be positive in up to 98% of SLE, at least at some times of testing. The pattern most accepted as common in SLE is "speckled" with elevated titre. Sometimes our doctors may have the ANA test redone using a different technique. Specific antibodies may be tested, such as the antiphospholipid antibodies, which may increase the risk of blood clots or strokes. Doctors can also do skin biopsies comparing an individual's rashes and normal skin. These biopsies are said to diagnose SLE in about 75 % of cases.

There are several tests used in diagnosing SLE including the Anti-DNA test, the anti-Sm antibody test, the anti-RNP antibody test, the anti-Ro antibody test, and tests measuring serum complement levels. But because the ANA test is the most routine and is the test which so often is used to deny diagnosis of SLE. it is the focus of this article. For further information on testing and other diagnostic aspects in SLE, please check out the links included later in the article.

Primarily, it's important to remember that only any four of the eleven established criteria are required for a positive diagnosis of SLE and blood tests need not be the strictest qualifiers. Yet many doctors still rely most heavily on the ANA test. If an individual does show positive ANA results, the presence of only a couple of other factors are necessary for accurate diagnosis.

There are many doctors who believe that one negative ANA test result means someone absolutely does not have SLE, with the only exceptions in cases of heavy or prolonged use of steriods such as Prednisone or recent chemotherapy. While these are reputable exceptions, the ANA test is notorious in the Lupus Community for false negatives in SLE and has been for many years. Specifically, many people with several physical SLE symptoms can have alternating negative and positive results on the ANA test throughout their lives. Others who've had several active SLE symptoms for years have never had a positive ANA result even when most or all other criteria are obvious during testing. There are experienced doctors who readily admit these facts.

When the ANA test is negative but other symptoms indicate SLE, the LE test may provide an accurate result. This test is considered to come up as positive in 90% of us with SLE, if done repeatedly, at least eventually. It's said to be positive aproximately 20% of the time in Scleroderma, Rheumatoid Arthritis, Mixed Connective Tissue Disease, in liver disease, and in people taking medications such as chlorpromazine, isoniazid, procainamide or hydralazine.The LE test may indicate SLE in the abdomen, spine, heart or lungs. It may show a false positive in Lupoid Hepatitis or may appear negative during steroid therapy or during remission. Unfortunately, since the LE cell test is not specific for SLE, it's rarely used nowdays.

All things considered, Lupus is far too complex and multi-symptomatic a disease for one test to establish criteria absolutely. Those doctors who are most beneficial in diagnosis and treatment are those who are up to date on Lupus research. They'll be experienced in SLE diagnositc tests and their idiosyncrasies and able to knowledgeably analyze symptoms and medical history. Equally important, they'll interact respectfully with the individuals who employ their services, realizing that the inhabitants of the bodies they treat have expert knowledge in their own right. In seeking diagnosis, the best trained doctors are likely to be rheumatologists or clinical immunologists but if questions are unresolved or complications develop, it's wise to seek another opinion. Which type of specialist to consult will depend on the specific problem. For example, a nephrologist would be best for a kidney problem, an opthamologist for a vision problem or a dermatologist for a skin problem.

National Jewish Medical and Research Center has been rated among the top 10 independent biomedical research institutions of any kind in the world by The Institute for Science and Medicine and as the only one that also provides patient care. NJMRC was ranked as one of the three most influential research institutions for immunology and as the number one private immunology research institution in the world. Their website with current information on respiratory/immunologic diseases and treatment is at: Information on SLE symptoms, laboratory tests, treatments and diagnosis is at: The Worldwide Lupus Links website at: has many useful links to guide you through this process and two fine pages, "Gathering Evidence for a Diagnosis" at:

The previous two articles, "Self-Advocacy for Optimum Healthcare", "Our Right to Pain Relief" and this article are part of a continuing series. This series is meant to assist in creating tools that can help to equalize the balance of power between us and the medical professionals involved in our healthcare. Knowledge truly is power, especially when shared. Our best hope of achieving fast, accurate diagnosis and optimum care is to recognize that, if we wish to survive and even thrive, in spite of Lupus, we'll do well to assume responsiblity for our lives, exercising that responsibility assertively and wisely. The ultimate difference between victor and victim is that those who value their lives learn to cherish and protect them.

This information, offered as food for constructive thought, is the product of research and the contributed experiences of individuals with SLE; members of the Yahoo Club, "Living With Lupus". The positive support and encouragement of friends within the Lupus Community can do so much to aid us in living longer and living well. By connecting closely in the Lupus Community, sharing our experiences, our research and multiplying the power of one, we can help to change the future of Lupus.

This article was researched, written and copyrighted 2001 by Shar Phoenix



Correction: The following line was accidentally cut from from the 2nd paragraph of "Our Right to Pain Relief" in the 3rd issue of The Butterfly News. "The Joint Commission On Accredidation of Healthcare Organizations signed this act last year & gave doctors, etc. one year to voluntarily comply. "( In context, that would be clear as, act signed 1/1/2000 and in effect from 1/1/2001)


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