Sjogren’s Syndrome

Sue 2005 USA

In August of 2003 my life was suddenly altered. Although I had some issues over the prior 16 years, no doctors could tell me what I was dealing with. Fatigue, joint pain and over the prior six years I would experience a weird sensation once per month where my eyes would be very dry. The dryness usually came around my monthly cycle and would go away shortly after, though the pain and the fatigue continued. I would go to GP’s, Neurologists, MD’s and soon became what I call a Medical Mystery. With my mom having Lupus and an Aunt having Raynauds I would contstantly wonder if these symptoms were a version of those illnesses. Alas my bloodwork always came back normal. Then in the summer of 2003 while on vacation at my summer home and after a day on the beach getting sun, I got my dry eye episode. I assured my family that it would be only temporary as it has always gone away within a day or two, however by the end of the week there was no relcif. Eye drops were ineffective, I bought just abour every brand known to man and they would just evaporate from my eyes as quick as I put them in. I played a waiting game for three more weeks to see if the symptoms would subside. I was hesitant to see a doctor to hear the same “I don’t know what it is”. Finally after being unable to drive a car from not being able to use my eyes, I made an appointment with an internist. I told her the problem wasn’t new and that every doctor I’ve seen hasn’t a clue. I told her I am tired of not getting any answers. She promised to get to the bottom of these problems. She took blood and all my tests came back normal. She then referred me to a Rheumatologist who also took blood that came back normal. He said based on my symptoms of dryness, joint pain and fatigue he would say I had Sjogren’s an Auto Immune Disease that attacks the moisture producing glands. He also recommended I see an opthalmalogist and told me there wasn’t much he could do for me. The opthomologist did the Schimmer test which measures the amount of moisture in your eyes. The test read 0 in left eye and 1 in right eye. He reccomended tear duct plugs which are surgically inserted to trick the eye into tearing. He put one plug in each eye. I went back about a week later and told him there was no relief still. He said that one plug isn’t enouch so we will put two plugs in one in the upper duct as well as the lower. Well this was too much as I looked like I was crying all the time. Yes it solved the dryness but now I couldn’t control the liquid. I work in sales and crying for the sale never works (Ha Ha) It wasn’t very funny really. The opthalmologist said this was the best he could do. One wasn’t enough and two is too much. The tear duct plugs added moisture but the fatigue and joint pain were constant. I went to a web site specifically for Sjogren’s and met a woman in New York who also had negative blood work and a Sjogren’s diagnosis. She was very pro active in research other causes of this illness including Lyme and Mycooplasma. She found the roadback site first and told me of a doctor in Georgia that treats with AP therapy. I told her I would go anywhere and try anything at this point. She went first. She started to chart and journal her progress, I was encouraged and was set to go to Georgia ( I live in Michigan) when she called to tell me about a doctor listed on the road back site who works in West Bloomfield , Michigan. Well that being only an hour away and Georgia being much much further, I contacted him and scheduled an appointment. He was scheduling about 4 months ahead at that point. Well lets just say from the moment I met him I knew he would get to the bottom of this bizzare set of sumptoms. He took 20 vials of blood. Some went to Maryland for PCR test for mycoplasma, and some went to the local lab. I don’t think there was much he left out. At that visit he noticed my thyroid gland was enlarged. He sent me for a cat scan of the thyroid. I got a call from this doctor about 5 weeks later. He said that some of my tests were in and some hadn’t come in yet but that the mycoplasma test was positive for two separate strains. He said that I take the prize for the highest titer he had ever seen. He called in a prescription for Minocin and Zithormax and also told me that my Vitamin D levels were low, from my vitamin panel my vitamin C level was 12 and it should be minimum 20, he said it was at scurvey levels. Wow I thought I ate pretty healthy! My hormone levels were pretty much zip, I was producing nothing no estrogen and no progesterone I started on Minocin and Zithromax, 100 mg Monday Wednesday and Friday and Zithromax on Tues and Thursday. He prescribed a natural hormone cream from a compounded pharmacy made specifically for my set of circumstances. He put me on Extra C 5000IU a day, DHEA, Flax Seed Oil Niacinimide, Vitamin B 12 injections, Vitamin A, Celtic Sea Salt, Iodine, three multi vitamins a day, something for digestion and a good probiotic. My thyroid scan showed no cancer but it was enlarged even though my thyroid blood work showed things were in the normal range. I take my regime very seriously and have never missed a dose of anything in seven months. I had some mild herx’s in the beginning, mostly tingling and out of body feelings which went away after about 2- three months. I noticed an increase in my energy and I no longer needed to fall into my comotose sleep. At about the four month point I could tell him that I felt about 30% better. My dryness / tearing had ceased for the most part. Occassional dryness still but nothing like before. I had a severe herx in February where I swear I felt like I had cancer of the bones, there wasn’t anything that didn’t hurt. I was also very cold the first few months of treatment. The doctor told me that the mycoplasma will attempt to lower your body tempurature as it likes a cool enviornment. This has since gone away. After this severe herx I can remember the date, it was February 13. I woke up without any symptoms, no joint pain, no fatigue no dryness. I felt like a teenager. I’m 47. I had the best day. I believe they call this day a window. My doc says you will have windows of improvement just as you may have set backs or flares as your body fights the toxins caused by the die-off of bacteria. Since then I have been on my way back. I am considering going back to work part time to start. My doctor said not to push it that at the 6 month to one year point I should be ready to return. I used to work 50 hours a week prior to becoming ill. I have a positive attitude toward this treatment. I do believe that infections are the root cause of Auto Immune diseases. I am an advocate of this treatment and I am not the least bit worried. Yes, I fully informed myself prior to starting this treatment and between some of the other drug choices such as steroids, plaquinil and methetrexate this program seemed alot safer to me. My doctor believes in building up the immune system while also attacking the infection. I am now 50% better at the seven month point. I have a few bad days here and there but compared to prior to AP there were no good days. I and my family are thrilled at the results. I hope this encourages you who are hesitant or worried. It is not a piece of cake and you must be patient as it is a slow and steady process but well worth the result. I have always been a pioneer and hope that as I get through this therapy I can leave my journal for my children and grandchildren should any of them ever encounter an illness such as Auto Immunity.

Return to Stories