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Kansas, thank you for the link. I'll check it out. Out of the 12 doctors I've seen only two did a test, only for what they could see with the "naked eye". They took a plug from my scalp where I had lost hair, and they both came back with alopecia. This was early stages of the disease. Since then, no other doctor has done any tests. They tell me I have a psychosis for parasites. To a person suffering, to me, I felt it was a slap in the face, but I just thank them, pay my hard earned money and go to another one. I have taken pictures of my scalp (which is full of lesions), and other parts of my body now after 2+ years and since March have been putting samples of things that have come from my body in separate Ziploc bags. Only one doctor would look at one photo. The rest "don't have time for that."
I am in touch with someone I met on the internet who has written a book and he's trying to help. He has helped a lot of others so I'm encouraged.
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@basslakeview - so sorry you have spent all these years ... isolated and fighting this alone. Early on in my husband's journey we chased the Morgellon's possibility and it seems to me there was a medical school, or some institution that was making Morgellons a priority .... but it will take me awhile to try to find who/where it was.
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The comments from the doctors stating that you have a psychosis for parasites has me furious. Many people, as well as doctors, label things they don't understand as mental issues. I can't tell you how many told me I was imaging the headache I get just walking by the tire dept in a store or how I feel when exposed to cigarette smoke. My rubber allergy results are in black and white now for others to see, testing as high as the test goes, so much so that the off gassing let alone contact raises my histamine levels. Like you and others I have had symptoms which confused many doctors and their labeling us neurotic is an easy out. You are on the right track to getting this figured out, just like I did (yes, I had physical causes for my symptoms as you do to). I found doctors that believed me and helped me. You have many of us that hope you learn something with your upcoming appointment and I don't want to pressure you but many feel invested in your life now so if you are up to it share what you learn.