Post by ctbarb on Feb 1, 2010 14:39:23 GMT -5
Hi Folks,
My visit to Boston was not everything I would have wanted...the Chief of Medicine did not show, but the intensivist did and was a kind, knowledgeable man. He took a history, viewed the samples and asked where they came from and appeared shocked when I told him! He examined me, asked about the lesions, specifically those on my feet and legs...examined the "Sleeping Giant" and asked how long it had been there and how it felt. He spent most of the hour on where I had been, if I had been out of the country in the last 20 years - and I had been...location, food, contacts, etc.
Then, another doctor appeared and asked why I was there...arms crossed, and an attitude before he even got into the room! He wanted my medical records, and I explained I was there for a second opinion (no records required) and that I had discussed the lack of records with Dr. #1. He flatly told me that he wouldn't spend 2 seconds on my case if I didn't produce the medical records! I told him that he was already in possession of the best medical records on me from my previous visit at his facility! He then wanted to know where they were? Told him, your files...he said, well if they aren't here now, we don't have them! I then informed him that this was an issue, my privacy and confidentiality of my records were now in question, and he'd best find them! He got huffy, and stalked out of the room! Dr. #1 was clearly embarrassed, and apologized for not having those records present. We went out to the discharge area and the gal at the desk clearly remembered me, and I asked her if she had my files. She said she was sure they were in the system, but no one had asked for them! At this point, Dr. #2 came by and just glared at me, and I made it a point to ask the clerk again if my records were in the system and she said "YES". Dr. #2 gave me a look that would kill...and I smiled back at him.
Upon leaving, I asked Dr. #1 an off-the-cuff question: I said, have you heard of a disease called Morgellons? I told him that I had seen an ABC Special by Paula Zahn a few years ago, and that one of my samples looked just like those she had on her show. He said he had never heard of Morgellons! Then asked if I had checked on the internet, and I said "No"...I could see where this was going....Morgellons, the Internet Disease...Then he said, well you can find anything on the internet, but would you please send me a picture of your slide? He said that he would look up the ABC Special on Morgellons and compare the two...
So, here we were, in one of the world's best facilities on Infectious Diseases, and he had not heard of Morgellons!!! I played my "Sally Stupid" role and just let it drop. As I was leaving, he asked me not to forget to send him the slide pix of the Morgellons look-alike...hmmmmmm.
My report will be sent to be reviewed by the Chief of Medicine and Infectious Diseases once the samples are processed. Many of those samples were entwined with fibers...easily seen...so I can't wait to hear the report. I go back for a follow-up in 2 weeks.
I've already sent him the link to the ABC special and a pix of the my slide that clearly matches what's on the tape. We shall see what they say here.
Since it was about 5F I thought best about riding my horse naked through the streets of Boston! I didn't wish to catch pneumonia in the process....hee-hee. Perhaps the weather will be a bit warmer in a couple of weeks.
What he did say however, that was interesting and gave me some hope, was "This is a most interesting and bizarre case"...he has no idea just HOW interesting it is about to become.
I know it doesn't give me any more info than I had going in, but perhaps something will come out of the samples and his look into Morgellons. I continue to have hope...and faith in Him.
I did contact the producer of one of Boston's stations, that had interviewed me previously about Morgellons. She is supposed to call me tomorrow to discuss a follow-up....this could get really interesting! Wish me luck!
Love and prayers,
ctbarb
My visit to Boston was not everything I would have wanted...the Chief of Medicine did not show, but the intensivist did and was a kind, knowledgeable man. He took a history, viewed the samples and asked where they came from and appeared shocked when I told him! He examined me, asked about the lesions, specifically those on my feet and legs...examined the "Sleeping Giant" and asked how long it had been there and how it felt. He spent most of the hour on where I had been, if I had been out of the country in the last 20 years - and I had been...location, food, contacts, etc.
Then, another doctor appeared and asked why I was there...arms crossed, and an attitude before he even got into the room! He wanted my medical records, and I explained I was there for a second opinion (no records required) and that I had discussed the lack of records with Dr. #1. He flatly told me that he wouldn't spend 2 seconds on my case if I didn't produce the medical records! I told him that he was already in possession of the best medical records on me from my previous visit at his facility! He then wanted to know where they were? Told him, your files...he said, well if they aren't here now, we don't have them! I then informed him that this was an issue, my privacy and confidentiality of my records were now in question, and he'd best find them! He got huffy, and stalked out of the room! Dr. #1 was clearly embarrassed, and apologized for not having those records present. We went out to the discharge area and the gal at the desk clearly remembered me, and I asked her if she had my files. She said she was sure they were in the system, but no one had asked for them! At this point, Dr. #2 came by and just glared at me, and I made it a point to ask the clerk again if my records were in the system and she said "YES". Dr. #2 gave me a look that would kill...and I smiled back at him.
Upon leaving, I asked Dr. #1 an off-the-cuff question: I said, have you heard of a disease called Morgellons? I told him that I had seen an ABC Special by Paula Zahn a few years ago, and that one of my samples looked just like those she had on her show. He said he had never heard of Morgellons! Then asked if I had checked on the internet, and I said "No"...I could see where this was going....Morgellons, the Internet Disease...Then he said, well you can find anything on the internet, but would you please send me a picture of your slide? He said that he would look up the ABC Special on Morgellons and compare the two...
So, here we were, in one of the world's best facilities on Infectious Diseases, and he had not heard of Morgellons!!! I played my "Sally Stupid" role and just let it drop. As I was leaving, he asked me not to forget to send him the slide pix of the Morgellons look-alike...hmmmmmm.
My report will be sent to be reviewed by the Chief of Medicine and Infectious Diseases once the samples are processed. Many of those samples were entwined with fibers...easily seen...so I can't wait to hear the report. I go back for a follow-up in 2 weeks.
I've already sent him the link to the ABC special and a pix of the my slide that clearly matches what's on the tape. We shall see what they say here.
Since it was about 5F I thought best about riding my horse naked through the streets of Boston! I didn't wish to catch pneumonia in the process....hee-hee. Perhaps the weather will be a bit warmer in a couple of weeks.
What he did say however, that was interesting and gave me some hope, was "This is a most interesting and bizarre case"...he has no idea just HOW interesting it is about to become.
I know it doesn't give me any more info than I had going in, but perhaps something will come out of the samples and his look into Morgellons. I continue to have hope...and faith in Him.
I did contact the producer of one of Boston's stations, that had interviewed me previously about Morgellons. She is supposed to call me tomorrow to discuss a follow-up....this could get really interesting! Wish me luck!
Love and prayers,
ctbarb