Post by cbutton2009 on Jan 13, 2009 17:45:49 GMT -5
Just wondering . . .
Has anyone heard anything (new) at all out of the CDC, since their announcement almost a year ago? How about private research? Any new developments?
I have had this illness for almost two years, so has my little girl who is 7 - and downs-syndrome. As I am a single parent . . .the suffering that we are forced to go through every single day is beyond what I can put down here in words . . .but am sure many of you know what I mean.
To make it worse, I cannot see a doctor, as I am going through divorce, and afraid that a DOP diagnosis could put me at risk to loose my daughter. I have been diagnosed with Lyme Disease (1999) and Chronic Fatigue (2000) and have had a pretty tough time of it . . .however, when the first symptoms of this bizarre "syndrome" hit us in Jan 2007, (both myself and my daughter) we went to the docs, and were treated for scabies (which made no sense at all) but, followed what the docs told us. Needless to say, it wasn't scabies . . .and to this day, the symptoms have never gone away. Sometimes, after spending a small fortune on alternative medicines, we saw a little improvement, but, it's never gone completely. In contrast, the "bad" days aren't just "bad" they are horrific.
As I am (or should I say was) a college prof, I threw myself into learning everything I could . . .but feel that the thousands of hours spent in research, cleaning, treating etc . . .have not done much except maybe help me not feel so helpless. It is my habit of checking every couple of months to see if there is anything . . .so when I read about the agrobacterium connection, I had hoped that this would speed things up . . .but, instead, it almost seems as if there is an effort to debunk it!
Financially, for obvious reasons, our situation is bleak . . .and I do not have family I can fall back on. Although I keep trying, I cannot work, and have been denied Social Security . . .their rationale was that I had too much education.
I keep hoping that one day soon we will find a doctor whose compassion, honesty and/or common sense outweigh the fear of peer review, lawsuits and insurance codes, (not necessarily in that order) there might be a bit of hope for myself and my little girl . . .and the many, many others whose lives have been devastated by this hideous "thing" that has gone on for much too long.
So - does anybody have an idea when the CDC or Kaiser will release their findings? Is there anybody we can write to in order to get them to speed it up?
Has anyone heard anything (new) at all out of the CDC, since their announcement almost a year ago? How about private research? Any new developments?
I have had this illness for almost two years, so has my little girl who is 7 - and downs-syndrome. As I am a single parent . . .the suffering that we are forced to go through every single day is beyond what I can put down here in words . . .but am sure many of you know what I mean.
To make it worse, I cannot see a doctor, as I am going through divorce, and afraid that a DOP diagnosis could put me at risk to loose my daughter. I have been diagnosed with Lyme Disease (1999) and Chronic Fatigue (2000) and have had a pretty tough time of it . . .however, when the first symptoms of this bizarre "syndrome" hit us in Jan 2007, (both myself and my daughter) we went to the docs, and were treated for scabies (which made no sense at all) but, followed what the docs told us. Needless to say, it wasn't scabies . . .and to this day, the symptoms have never gone away. Sometimes, after spending a small fortune on alternative medicines, we saw a little improvement, but, it's never gone completely. In contrast, the "bad" days aren't just "bad" they are horrific.
As I am (or should I say was) a college prof, I threw myself into learning everything I could . . .but feel that the thousands of hours spent in research, cleaning, treating etc . . .have not done much except maybe help me not feel so helpless. It is my habit of checking every couple of months to see if there is anything . . .so when I read about the agrobacterium connection, I had hoped that this would speed things up . . .but, instead, it almost seems as if there is an effort to debunk it!
Financially, for obvious reasons, our situation is bleak . . .and I do not have family I can fall back on. Although I keep trying, I cannot work, and have been denied Social Security . . .their rationale was that I had too much education.
I keep hoping that one day soon we will find a doctor whose compassion, honesty and/or common sense outweigh the fear of peer review, lawsuits and insurance codes, (not necessarily in that order) there might be a bit of hope for myself and my little girl . . .and the many, many others whose lives have been devastated by this hideous "thing" that has gone on for much too long.
So - does anybody have an idea when the CDC or Kaiser will release their findings? Is there anybody we can write to in order to get them to speed it up?