well 3 years after being diagnosed with SD I finally found an awesome rheumy who did PFT and echocardiogram for the first time. I am very relieved that they are both perfect and all my bloodwork is now too except my ANA at 1:320. My cd57 for Lyme came back at 95 and I am going to be able to reduce some antibiotics in a few months I think. This rheumy, while not an AP doc is just awesome to me. He was so supportive in my battle with long term disability. I have ended my relationship with that program now and just choose to work 4 days a week. This doc wants to keep out of the Lyme controversy like all the rest but he does listen with great interest about infectious cause of SD. He wants more studies done as he thinks the medical community is clearly missing something. He is stunned with my great progress and said he can hardly find a trace of SD on me anywhere and he has not seen anyone’s skin get this soft. When I told him I was going to cut off some of the drugs I was shocked when he said “no don’t change a thing you are doing” . Since I am on 3 oral antibiotics that came as a surprise to me from a rheumy. I assured him I would keep on the doxy and he was good with that idea. I have to travel from Victoria to Vancouver to see this man but it’s so worth it! I have an awesome Lyme doc, naturopath and GP but when you can get an allopathic specialist on your side it rocks! Have a great weekend everyone!
Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C
So happy with your good news.Way to go kid.
When you have a spare minute could you e-mail me the name and phone of your rheumy.I have a friend in North Delta
where I used to live.She has bad RA and really need a good doctor. email@example.com
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