Guest guest Posted December 2, 1998 Report Share Posted December 2, 1998 nne & Suzanne, I am so sorry to hear of your mother's plight. My family is also dealing with my mother's illness. She is pretty much in the same shape as your mother. We are also upset with how the doctors are treating this. Originally, before it was definitely diagnosed as CJD, they wanted to do an EEG every week. Once CJD was confirmed, they basically gave up on my mom. They said that they have enough data on this disease. How can they have enough data when they can't tell us what causes CJD, give us any treatment options, or provide us with ways to avoid getting this disease. There is NEVER enough data until we get answers!!! Please hang in there and keep in touch. I just left Massauchusetts to come back to California, where I live. I will be back in MA at the end of the month, if you want to talk. Hang in there. My thoughts and prayers are with you. === It's never too late to be what you might have been - Elliott ---CPUB90@... wrote: > > From: CPUB90@... > > My mother was just diagnosed with CJD. We are from Taunton Massachusetts. We > are bringing her home from Mass General Hospital located in Boston, Mass., to > die. This is just blowing our minds apart! When we met with her team of > Doctors, I sensed a pattern of denial! Everyone had a different number of > people that they have had as patients at this hospital. Some of the doctors, > at different times, said it was very rare, only a few, while the nursing staff > told my sister and I that they see many cases.I have contacted the Mass. > Infectious Disease Control office, and have an appointment with the head of > their department 9 A.M. tomorrow morning. SOMETHING JUST DOSEN'T JIVE!!! We > have no way of finding if there have been any cases are in the Taunton area ( > and as I believe, many other poor souls sitting in phyciatric wards, getting > miss diagnosed). My mother was very quick. She became very confused on > November 1st, 98. SEE HOW FAST IT CAN BE! My dear mom is already on a feeding > tube, and very sick. She cannot talk, and is already showing sign of lung > involvement. We are devastated at what is happening to our DEAR MOTHER, and it > will be our mission, to find out! My sister and I have different views on the > source of my mothers illness, but one thing hold true. ...we are both learning > and talking to the public about this rare illness...THERE IS ABSOLUTLY NO > PUBLIC AWARENESS ABOUT THIS DREADFUL DISEASE! Sorry for my anger...but I am > mad and very hurt and scared that I am losing my best friend! Thank you for > reading this..nne & Suzanne > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1998 Report Share Posted December 2, 1998 nne and Suzanne So SO sorry about your mother. You are doing the right thing by trying to find answers. Keep at it until you get answers!! -------- >From: CPUB90@... >To: linda.lesher@... >Subject: RE: Re: NEWS >Date: December 01, 1998 > >From: CPUB90@... > >My mother was just diagnosed with CJD. We are from Taunton Massachusetts. We >are bringing her home from Mass General Hospital located in Boston, Mass., to >die. This is just blowing our minds apart! When we met with her team of >Doctors, I sensed a pattern of denial! Everyone had a different number of >people that they have had as patients at this hospital. Some of the doctors, >at different times, said it was very rare, only a few, while the nursing staff >told my sister and I that they see many cases.I have contacted the Mass. >Infectious Disease Control office, and have an appointment with the head of >their department 9 A.M. tomorrow morning. SOMETHING JUST DOSEN'T JIVE!!! We >have no way of finding if there have been any cases are in the Taunton area ( >and as I believe, many other poor souls sitting in phyciatric wards, getting >miss diagnosed). My mother was very quick. She became very confused on >November 1st, 98. SEE HOW FAST IT CAN BE! My dear mom is already on a feeding >tube, and very sick. She cannot talk, and is already showing sign of lung >involvement. We are devastated at what is happening to our DEAR MOTHER, and it >will be our mission, to find out! My sister and I have different views on the >source of my mothers illness, but one thing hold true. ...we are both learning >and talking to the public about this rare illness...THERE IS ABSOLUTLY NO >PUBLIC AWARENESS ABOUT THIS DREADFUL DISEASE! Sorry for my anger...but I am >mad and very hurt and scared that I am losing my best friend! Thank you for >reading this..nne & Suzanne > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 1999 Report Share Posted January 23, 1999 Pat; Thanks for the reference to the article, I will be sure and pick up a copy. a G. ---------- > From: APE826@... > To: cjdvoice (AT) onelist (DOT) com > Subject: Re: news > Date: Friday, January 22, 1999 12:37 PM > > From: APE826@... > > a, > > Liz had sent Dr. Bastian's request through the group. Dr. Bastian has been > doing research on CJD for years with his own money. He believes the " agent " > is bacteria (spiroplasma). > > There is an article in February 1999 issue of The Atlantic Monthly titled " A > New Germ Theory " by Judith Hooper. It mentions the new theory of Professor > Ewald and Cochran on infectious diseases. It is not on the > Internet yet but is at newsstands. > > I have an open mind.................Pat > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 -- http://www.independent.co.uk/sindy/stories/A0702923.html Quote Link to comment Share on other sites More sharing options...
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