Posted 3/23/2020 12:36 PM (GMT -6)
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!!