Sorry for not really being around the boards much...things have been rather crazy lately. I ended up having a chest port implanted yesterday morning so I could begin IV Rocephin and I ended up having a complication that I'd never heard of. The surgeon told my Mom that he suspects I have a condition called scleroderma (a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases) because when he went to make the small incision in my neck to help feed the line into my heart, he found that cutting into my neck was like trying to cut through gristle in a piece of meat...I dulled some of his scalpels.
He cautioned me that he had to dig through a lot of muscle to get things placed right & that my neck would probably hurt quite badly for a little while. Boy, he wasn't kidding, my neck hurts easily twice as bad as where the port was placed in my chest. I had never heard of scleroderma before and I was wondering if anyone else has experienced this as a complication from Lyme, Bartonella, and/or Babesia. It's not really listed as a complication that I could see, but it's just really weird to have Lyme & co-infections along with this other autoimmune condition and have them not be related. I don't know, I would really appreciate some input & guidance. I thankfully have an appointment with my LLMD already scheduled for Monday (and I plan on asking him about it), but I'd really love your guys' input.
Your Lyme Doc is not likely to have the specific skill set to deal with this development. When PTLDS has not been resolved damage to the auto-immune system is not uncommon. Scleroderma is actually NOT uncommon . It is a very serious autoimmune disease that needs specifically treated or it can get very bad very quickly. It is often co-occurring with Raynauds.
The initial presentation in most scleroderma patients is Raynaud's phenomenon.Nailfold capillary microscopy can help differentiate primary Raynaud's phenomenon from that secondary to an underlying connective tissue disease.Although not specific, ANA has high sensitivity in scleroderma (60%-80%) and is useful as a screening test.Limited and diffuse diseases have different disease courses and prognoses. The nature and extent of organ system involvement also determine the prognosis.Therapeutic modalities now include ACE inhibitors for scleroderma renal crisis; parenteral prostanoids, oral endothelin receptor antagonists, and PDE5 inhibitors for pulmonary hypertension; cyclophosphamide for interstitial lung disease in early scleroderma; and octreotide for intestinal pseudo-obstruction.
Once the auto-immune system is damaged, it is rare that the damage can be reversed by treating the cause. However early and aggressive treatment of autoimmune diseases can dramatically improve outcomes. Depending on the type of scleroderma one has, there may be a range of physicians to deal with. Generally a Rheumatologist does the initial work up. Hopefully you have just a bad day with the surgeon, or one if the milder secondary forms scleroderma. This is a serious enough situation that I would ask your surgeon to make a referral, as the wait time for the better rheumies can be quite lengthy.
At the very beginning of my diagnosis journey, my GP first called the autoimmune indication 'overlap syndrome' as I had so many different symptoms of different autoimmune diseases, but he could not determine any for sure except Sjogren's. He suspected I had Scleroderma, but my second and current Rheumatologist says not. However before he decided this, I had done quite a lot of research on this, and I agree with tj1, you need to get to the very best Rheumatologist you can find, as soon as you can.
If your Lyme Doctor is not familiar, perhaps your general practitioner can not only suggest a Rheumatologist, but get you an appointment in the near future.