Lupus or Lyme? Indeterminate Avise CTD 11 months ago and symptoms still current

Hey all,
This online forum has really pulled me through so much anxiety and has helped me so much with all the symptoms and issues I’ve been having. I'm normally hanging around the Lyme disease group but thought it would be smart helpful to come over to this forum and see what you all think and what I should do moving forward.
I’ll give you some history first. In 2014 I was finally diagnosed with Lyme, mold, cmv, hhv6, and mycoplasma with already having thyroid disease(Hashimoto’s dx 2012) after being driven crazy by crazy symptoms for years that we’re actually Lyme and co-infections all along. In 2014 I had a positive ANA, chromatin antibodies, and an scl70 that was positive in 10/15 and then all but the ANA were negative 12/15. Now fast-forward to 12/17 I had a positive mycoplasma, positive sinus infection with two bacteria’s, and a positive Bartonella henslae and sibo all diagnosed. in 2018.
Fast forward now to the last couple months I have still been feeling terrible even after the herbals and antibiotics for treatments with an approved ILADS doc. I’m also starting to get worse it seems as Raynaud’s have shown up in my hands at work, getting spider veins in my legs, my nails are very pale, and just no one seems to know what to do with me. I requested a rheumatology panel and my doctor ordered the avise CTD panel. All that came from it is an indeterminate result for lupus.

The results are: (result [<=>] range)
Ana 55 - weak positive according to lab
Hep2- 1:640 (high titer)
Anti DsDNA 188 (<320 negative with lab)
Negative ec4d (5<15), negative bc4d (44<61)
Anti-carbamylated protein negative (13<20)
Anti-cardiolipin igm negative (4<20)
Anti-cardiolipin igg positive (51<20)

I don’t know what to do with these results and if Lyme is causing them or if I do have an underlying autoimmune disease besides the hashi’s? I only have at most 2-3 of the 11 criteria for Lupus and just don’t know what’s wrong. The white fingers and vein issues have freaked me out it just seems no one has answers. Also I’m Hesitant to see a rheumatologist as I don’t want them to diagnose me if it’s not actually the disease or treat me as a guinea pig.

What would you all do and could Lyme be behind this or does this sound like lupus?

Thanks so much for all and God Bless you all and your paths to healing!!

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....??

Twin2jlb said...
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.