Hi Franky! Nice to hear from you. I have no idea how I got it, wish I did. Again, I have many theories (but that's as far as it goes). I believe it was transferred by a tick or other bug bite. I have had an open wound for the full 5 years, and no one else in my immediate or extended family, or people at work, have gotten it. I would say for the first 1+ years, I was not overly careful in not transferring it to the girls, as I just thought it was a poorly healing wound). Also, my husband and I have continued to be intimate throughout and he has not been infected. But I am somewhat lucky in that I only have it on one side of my face, not over my entire body, so it is possible to avoid contact with that one area.
I believe the critters die immediately once they are removed from the host (aka me - yuck!). this would also explain why the DR's cant see them, they die too quickly once extracted. (yes I brought samples, in desperation, with zero luck). Therefore, I think it would take a direct transference from one host to another (ie: bug bite). That might also explain why some people get it, and others not. I have traveled to other areas as part of my job, without my family. Very possible that I could have gotten exposed and they didn't. Alternatively, our family could have all been in the same area where bugs host these, but only I got bit by something. Maybe this is why others have a few family mbrs with it, but not all of them? It might
appear that one person got it first and then gave it to the other person. but I believe (again, theory only!!) that they could have gotten exposed/bit at the same time, but the incubation within each person is different based on their immune system. Or possibly, the maturity stage of the parasite that got transferred was different?. I would LIKE to think that, because then we could interact normally in society without fear of giving this to anyone else. If it were very contagious, I think my entire family would have had it by now.
Another strange observation - I have had it five years, and I have only had it in the one area on my face and down my neck on that one side (spread quite a bit, but seemed to radiate from that one initial area). I never had an outbreak anywhere else. I would be interested to hear from others, who have multiple areas. Any thoughts if each could have been an initial bite? I saw Bubba's story that it lives deep inside and can come out anywhere (that just scares the h*** out of me). But I plan to follow her treatment just in case
