Ginger’s Story
I am nearing 70 yrs old and was recently diagnosed with Late Stage Lyme. I have spent years trying to find out why my fatigue was so bad and since the 1990s I’ve only been able to work part time and raise my two girls without crashing from exhaustion which has happened to me while trying to work full time.
It seemed like everyone around me was passing me up, including people older than I was, working longer hours and I could barely keep up with what I had to do let alone wanted to do. I was first diagnosed with hypoglycemia (#1 autoimmune) two years after the birth of my second daughter 1973. I miscarried my third child in the second trimester in 1981. My Doctor said that more miscarriages occur to women who have autoimmune issues such as hypoglycemia. He cautioned that other autoimmune issues could occur as I got older! He was one smart doctor because 6 months after pre menopause surgery for the removal of my uterus I lost estrogen and thyroid was diagnosed with Hashimotos (#2 autoimmune).
I thought, boy was my Doctor right! I now have 2 autoimmune issues! Well, I decided that my fatigue issues were coming from a possible low thyroid that had not been detected all my life but medication did help but did not entirely get rid of the fatigue. I’m trying to be vigilant and keep going from Doctor to Doctor who look at my blood work and say, you are fine! Then Fibromyalgia takes hold when in my mid 50’s. Seek a rheum for this diagnosis, yet all this time I have no elevated blood levels to indicate inflammation seen in other more serious autoimmune diseases like Lupus, MS or RA. My PCP is always pleased with my labs and finds nothing unusual. I leave thinking I know there is something not right still! I was starting to have dry eyes and other drynesses and I sought out a different Rheum at Baylor and asked her if I had Sjogrens. She said no, my labs did not show this. She told me I could do a lip biopsy but she was certain I did not have Sjogrens. I accepted her evaluation with out doing the lip biopsy. Years go on and I’m still not better and worse so I tell my PCP she has to find me a good Rheum that can diagnose what I have as the all over body pain was getting me down. By this time I’m on antidepressants for Fibromyalgia.
Then came the diagnosis of Ehlers Donlos Syndrome a genetic connective tissue disease. I’ve been double jointed in my shoulders all my life and had a shoulder injury while playing softball as a young teen. From the Rheum who diagnosed EDS, I decided to get a second opinion and disregarded everything other doctors had told me and headed straight to another Baylor Rheum who took my suspicions of Sjogrens to heart. I had blood work again not positive and biopsy was positive for Sjogrens (#3 autoimmune). No one but me questioned why I have three autoimmune diseases? Why all this fatigue, pain and low grade fever from time to time. None of these doctors could but all this together and none seemed interested in looking further.
While discussing with a close friend, all my issues she encouraged me to go see her doctor who diagnosed her with Lyme Disease. When I started investigating the symptoms, I was blown away at having every symptom, yet none of my doctors I’ve seen over 30 years put it together. After seeing Dr. Patricia Salvato, my mind was finally eased by knowing how this disease has ravaged my body, my lungs, my brain and my life! I’m currently in treatment and on Doxycycline for yet a few more weeks. Herxing has been bad but I do see light at end of tunnel! Started Low Dose Naltrexone last night and slept the best sleep I have in years!
I’ve not ever been complacent with my health but I need to know why doctors are not taught in medical school to look for infectious diseases? My co-infection is RMSF. I’m in process of going back to my PCP to tell her the news! I’m really wondering if she knows anything about Lyme and why she could not put all symptoms together to make this diagnosis. Are we living in a world void of really great doctors? It seems like it to me! I think one of the problems is most doctors do not use or look at their questionnaires if they even have them. My situation may just be very complex, but why has it taken me all these years to finally get an answer? I still would be looking if my friend had not had Lyme and pointed me in the right direction. There has to be thousands of people dying from Lyme and not ever knowing they had it due to the lack of training doctors get in medical school to recognize it. This is my story and I’m sticking to it! I hope it helps others to keep trucking until you know for certain you are properly diagnosed!
