This is interesting to me as my daughter (who is now 14) was diagnosed with lyme and co in 2016 (after nearly a year of symptoms, two hospitalizations, and 2 misdiagnoses -systemic lupus then somatoform disorder). She had very high ANAs in 2015 and 2016 (1:1280 speckled) but they diagnosed her with a psychological disorder- it was awful. Anyhow, over the past 4 years her ANA's have remained elevated and she's come up positive for SCL-70 at least twice. Her functional med specialist has believed it to be a false positive due to numerous underlying infections. BUT she is now getting worse and worse with what seems to be MCAS symptoms (wheezing, hives, rashes, dermatographia). And over the past few months she's been having weird circulation issues (burning sensations in fingers, toes, portions of fingers turning white- but not quite looking like typical Raynaud's -her toes and ball of foot swelling after swimming in cold water, and now the soles of her feet are peeling. I'm wondering if it could be part of MCAS, possible beginning of scleroderma, or maybe just residual damage from her long illness? Her functional med specialist said that babesia can cause circulation issues too just in case that has any pertinence to you. I'm sorry this is not of much help, but I really feel like we're stuck in limbo between the questions of a possible autoimmune disease of just effects of lyme/MCAS. And, since nobody knows the cause of autoimmune disease, maybe it is the stealth, chronic infections that cause the disease as well as the markers....??
This sounds exactly like my scenario. I grew up in CT, played in the woods all my life. Have 4 IgG bands on the western blot. Probably had lyme as a kid as I was always complaining of feeling off, exercise intolerance, ocd, all the typical lyme stuff. In 2014 I started to develop vestibular migraines and reynauds. They noticed my ANA was elevated. By 2016 I started to develop "fibromyalgia". In early 2019 the nerve pain started. Its now severe, to the point where it controls my life.
I may have had lyme, but what I have now is an autoimmune disease. My ANA is also 1:1280. I have a positive RNP, SSA and GAD65 antibodies. The official diagnosis is "Undifferentiated Connective Tissue Disease" causing small fiber neuropathy. If her ANA is 1:1280, i cannot stress how high that is. There is an autoimmune process at work.