Friday, August 12, 2011

Is there a Lupus Doctor in the House? We need answers.

(or is it?)
     Why is it so hard to get answers to basic questions about autoimmunity? I have raised the issues below with several highly regarded experts, and I have gotten virtually no useful information.  I spoke to a professor of immunology who said, "The questions you pose are the very questions we are trying to answer. You have actually painted quite a clear picture of this complex, baffling disorder just by framing it as you have."
    I don't buy this. I am starting to wonder if they have any idea what they're doing when they "treat" us. How can we trust either their diagnosis or their "medical advice" if these fundamental issues remain a "mystery"?
    At the bottom of this post are some insights sent to me by Dr. Noel Rose, director of the Center on Autoimmune Disease Research at Johns Hopkins University.  I am still hoping we can get additional information on these issues:
   1.  Once autoimmunity has been set in motion, does it ever go away? Should we assume that we will endure this affliction forever?

    2. Can a healthy, active lifestyle (or any other intervention, or pure luck) enable the body to “cure” itself? Have meditation, yoga, acupuncture or other alternative therapies ever been shown to be effective in returning the immune system to normal? Can they lessen the degree of autoimmunity?

    3. Is autoimmunity progressive, i.e., should we assume that our ANA and other numbers will  rise, or are they likely to remain at the elevated levels that were initially discovered? Should we be retested periodically to assess our numbers, or is this of no value?   

    4. Will taking Plaquenil alter our lab tests for ANA, etc? Can it actually lessen our degree of autoimmunity?

    5. When lab results indicate that autoimmunity is present, how much difference do the numbers make? If ANAs, for example, are elevated to a relatively low degree, what should our course of action be?
    At what level does autoimmunity become a disease state?
    Is damage occurring within us even at low levels and even if doctors can‘t attach a name to the “disease”?

    6. If our lab work indicates autoimmunity, but we are unable to obtain a specific diagnosis, what should we do?

    7. Do higher numbers indicate that a process of greater severity and with greater potential for damage is occurring?

    8. In other words, are there degrees of autoimmunity? How does treatment differ with varying degrees? Should one’s decision on whether to take medication be determined by the lab numbers that depict the level of autoimmunity?

    9. I have read that the chronic inflammation which is associated with lupus and other autoimmune conditions can affect the skin, heart, lungs, kidneys, joints, and nervous system. My C-reactive protein tests indicates that I am free of inflammation. None of my doctors asked about this or tested me for it, even the ones who said I have systemic lupus -- I had the test done at my own initiative. How can this apparent discrepancy be explained: autoimmunity but no inflammation?

    10. Does the damage occur to us internally only during flares, or is it happening all the time like it is with high blood pressure? Is there really no way to tell if we are having an internal flare?

    11. What is a flare, exactly? What occurs physiologically during a flare? How long do they last? How is it that they can affect isolated organs when autoimmunity is systemic? Does each flare affect the same organ, or can they 'move around'?
    12. Is someone who has laboratory findings consistent with lupus, but who has not been conclusively or convincingly diagnosed with lupus by any of several doctors, still vulnerable to the internal “flares” and organ damage that a lupus patient faces?

    13. Should we be getting regular tests to monitor kidney function once autoimmunity has been discovered? What other tests should be considered to monitor possible internal damage due to autoimmunity? Are there tests to monitor possible neurological damage?

    14. Do ups and downs in lab results for immune function indicate that our condition is changing, or is the variability irrelevant to the seriousness of our condition?

    15. What factors might contribute to improvement or deterioration in the severity of our autoimmune situation?

    16. When one has elevated ANAs and other immune-system indicators but doesn’t have a specific diagnosis, what does that imply about our current state of health, and our future? What is the prudent action to take?

    17. Do elevated antibody readings mean that we have an autoimmune disease of some sort, even if it’s not lupus? If not, what does it mean? Does everyone fit into one of the 80 to 100 autoimmune disease categories, or do some of us have a “nonspecific” autoimmune condition?

    18. Is there some general regimen that a person with a nonspecific or undiagnosed autoimmune disorder should follow?

    19. Does the patient with lupus-like autoimmune lab results,  but who is said not to have lupus, need to take the extreme precautions regarding UV exposure as someone who has been positively diagnosed with lupus?

    20. Since I exhibited enough of the criteria in one month to be diagnosed with lupus but not enough two months later (although the lab results remained the same), is it possible that in subsequent months, I will once again face the prospect of a “definitive” lupus diagnosis? And then another reversal?

    21. Some of us have lab results that refer to a “high chromatin antibody level,” which is described as a frequent "early marker" of systemic lupus, yet doctors have not attached the name "lupus" to our condition. What are the other meanings that “high chromatin antibody level” can have? In what way should we follow up on these readings. as well as the DsDNA readings?

    The data I have seen indicate that high anti-chromatin antibodies virtually always indicate systemic lupus and are never found in healthy individuals.  According to the NIH, anti-chromatin antibodies are both sensitive and specific for SLE, and are a useful marker for an increased risk of lupus nephritis. "Anti-chromatin antibodies are not generally found in any other disease, thus showing very good sensitivity and specificity for patients with lupus,"says an article in the Annals of the Rheumatic Diseases. So on what basis would a doctor ignore these readings and retract a lupus diagnosis?

    22. When one has an autoimmune disorder, how does it affect the immune system’s ability to fend off the external invaders that it was intended to fight? If our immune system is engaged in attacking us, can it still protect us from the flu, pneumonia, shingles, cancer, etc? Is it safe to get a shingles vaccine?
    When one has an autoimmune disorder, are things that are harmful in general more harmful, such as pesticides, volatile organic compounds, pollution, sugar, chlorinated and fluoridated water, mercury fillings, allergens, etc.?

     23. If our lab testing indicates a low red and white blood cell counts and a high MCH and MCV, and if our blood-oxygen level drops significantly, could that be explained by autoimmunity? Are there treatments for this condition? Would B12 shots be indicated?

    24. Is it true that Vitamin D exacerbates autoimmune disorders, as Dr. Trevor Marshall has so intriguingly argued?

      25. If testing indicates that autoimmunity is present, is our immune system attacking us, even if doctors are unable to attach a name to our autoimmune condition?

    26. What does it mean if a patient who has always had ANA numbers within normal range develops a persistent increase in (positive reading) ANA Screen IFA, ANA TITER ANA, out of range double-strand DNA, a nucleolar pattern and an increasingly high (out of range) result on the antichromatin antibodies?
    It does seem that something which is NOT GOOD is happening in the body. Is that not the case?

    27. Is a 1:160 ANA titer what you would regard as a 'low level'? The lab numbers range from negative to low to elevated, and "elevated" is designated at 1:80. So is 1:160 'low level'?

   Dozens of my readers have reported this situation: Lab tests indicating an autoimmune issue plus the presence of many diagnostic criteria. Some doctors say they have a disease, others say they don't, some -- as in my case -- saying I do and two months later saying I don't.  Meanwhile we're warned about irreversible organ damage, even as we're told we don't seem to meet "enough" of the criteria "currently." One doctor acknowledged to me that diagnosing lupus is more art than science, but it's seeming more like a game of craps.

    28. LIKE MOST OF THE WOMEN WHO HAVE WRITTEN TO ME with elevated antibodies and other abnormal blood work, I feel that I am ill.  Are we all just neurotic?

    29. Do you believe that we should take Plaquenil "just in case," when various doctors equivocate on our diagnosis?

    30. Do you believe that probiotics can play a role in modulating autoimmune processes?

    31. If elevated ANAs are of no concern without "clinical parameters," as Dr. Rose indicates, what causes them to rise?
   32. If autoimmune diseases "wax and wane," does the internal damage that they are causing wax and wane as well? If your rash fades, for example, or if some of your other criteria improve, can you consider yourself "well" for the time being, or at least less unwell?

    Dr. Noel Rose, director of the Center on Autoimmune Disease Research at Johns Hopkins University, has been publishing articles on this subject since the mid-1950s.
    In his correspondence with me, he provided the interesting insight that, "Autoimmunity is not disease.  Autoimmune disease is a clinical diagnosis, and laboratory tests serve predominantly as confirmation."
     Low levels of anti-nuclear antibodies (ANA) are very common and are rarely a cause of concern in and of themselves, he adds.   "The presence of a positive ANA or other laboratory determination is by itself not indicative of disease.  It may remain the same, may disappear or may predict later disease. If there is no clinical indication, there is no reason to repeat such a test. "
     Dr. Rose stresses that laboratory tests are secondary. "Autoimmune disease is diagnosed by history and clinical signs and symptoms," not by numbers, he says. If you don't display the outward signs of lupus, for example, you don't have lupus -- no matter what your ANAs, anti-chromatin antibodies, CBC, etc.
     For patients who are concerned about the amount of damage that is being done to them internally by an autoimmune condition, the laboratory numbers are just one factor that is considered, he says. "This is a functional determination and not necessarily related to the amount of antibody," he adds.  
    Your treatment should be determined by your symptoms, not by your blood work, Dr. Rose says.  He also states that autoimmunity doesn't necessarily increase inflammation, so a low C-reactive protein test doesn't mean that an autoimmune process is not in effect.
    Your lab results can vary over time without an actual change in your clinical condition, he says.
    "Autoimmunity is by its nature specific, but the disease may not be well localized particularly in the early stages," Dr. Rose explains.
    Most autoimmune patients do not lose their normal immune response, he says, and are thereby not more susceptible to getting sick. However, some of the drugs used to treat some autoimmune disorders may impair protective immunity, he adds. 
    "Some forms of anemia such as hemolytic anemia or pernicious anemia may be related to autoimmunity," Dr Rose says.