Hello---I am new to this blog and just happened to see this post about Dr. Birnbaum and your question about alternative treatments. I live near DC and recently attended Dr. Birnbaum's lecture at the Sjogren's Syndrome Foundation's national conference. I got to speak with him afterward and I have an appointment to see him in August (he is obviously very busy with his practice, because I'm having to wait several months to see him.) I am 56 years old and have had Primary Sjogren's since I was in my 20's but was not diagnosed until I was 35. My first cousin has it also. I have fibromyalgia, sleep apnea, chronic pain all over and extreme fatigue; also believe I have had some nervous system involvement for some time now, as I have had restless legs and some other symptoms for several years. Over all, however, I think I have done quite well using almost all natural therapies to treat myself for quite a few years. I have very bad side effects to just about any drug I take, and I believe that for the most part, when your immune system is
compromised, your body will probably NOT like chemical drugs!I have never had a lot of clinically significant bloodwork, however, I was diagnosed when I had a salivary gland biopsy done at Duke University's Sjogren's Research center that showed the lymphocytic infiltration which is positive for Sjogren's. If you read a lot of medical articles about Primary Sjogren's you will find that it is quite common to be "seronegative" but yet have serious complications from the Sjogren's, including neurological. What I wanted to pass along to those of you who are interested are 2 natural treatments that have especially helped me, one of which I just started 2 weeks ago but has already helped my nervous system symptoms of dizziness, imbalance, and tremors. After taking an herbal tea called Flor Essence for 5 days, which is the perfected version of a Canadian remedy called Essiac, those symptoms have already subsided.
After 13 days, I am experiencing more energy and sleeping better, and have had NO headaches since taking it!! Please research online to read about this remarkable herbal tea and draw your own conclusions! There is a fascinating book about the history of it called "The Essiac Report" by Richard Thomas which you can find in many book stores. Thousands of people since the
1930's have had remarkable success with this formula with many different conditions. I am very hopeful and excited about taking it! The other thing that has helped my eyes greatly is taking Evening Primrose oil (Omega 6 fatty acid) for about 14 years now. I read about studies in England that showed improvement in different aspects of tear functioning in those taking EPO, and after a year of taking it back then, my eye Dr. was amazed at the difference in my eyes. I no longer had the "staining" (dry spots) on my corneas. I am still taking it and had a complete exam and field vision test last week, and my eye Dr. here says my eyes look great! I can ONLY attribute it to the EPO, because my cousin has had numerous corneal transplants over the years and I have had NO problems that way. Be careful to balance it with taking Omega 3's also. Someone on this blog mentioned that "an ANA test decides" if you have Sjogren's Syndrome. That's actually not very accurate----an ANA (antinuclear antibodies test) can be positive for any number of autoimmune diseases, not just for SS. It is only one of numerous "clinical criteria" for establishing a diagnosis of SS. The salivary gland biopsy is still one of the most accurate ways of diagnosing it, as far as I know. I was told years ago that some people can actually have positive ANA's just because one of their parents does, and they may not actually have disease at all. The Sjogren's antibodies (SSA and SSB) are not even diagnostic for sure, because only about 40-50% of people with SS have them positive. Sorry this reply is so long, but I have studied much about Sjogren's for a couple of decades now (not that I'm an expert by any means), just have a lot to share, and definitely understand the misery that Sjogren's causes!