Guest guest Posted June 13, 1999 Report Share Posted June 13, 1999 Every county seat is supposed to have a law libary at the courthouse.........go and ask the law librarian for the States info on medical standards or if you have a major university law school in your area go there and you can get help............you also should be able to access all of you States Statutes from your computer.......just do a search using the state you live in and the word statutes.......sherri (alias lymebrain) > > From: lc lott <lclott@...> > > Hi all- > Heres another update. Saw my lawyer on Fri and we are starting the > lawsuit against the LTD co who refuses to pay me disability. Hoping > just the threat of a lawsuit will make them cave and pay me. > When we discussed the suit against the docs the problem we are going to > have is: Did the 5 docs that failed to treat me folow the standard of > care in the state of MI? > Any body have an idea how I can find out what the standard of care is > either in the state or even if there is a national standard maybe by > the CDC? I know they have the reporting standard but do they make the > standard of care for the US? > Any info would be appreciated. > L > > _________________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 1999 Report Share Posted June 13, 1999 Hi , I don't think there is a standard care for Lyme, since there are two schools of thought. The insuranace companies use the one they want. Your best bet is to get every article you can to dispute their " no lyme " in Michigan brains. All of us will probably testify for you that we need/needed treatment right away. Love ya, Connie, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 1999 Report Share Posted June 13, 1999 Hi , Our new attorney general has a web site, but I can't remember what the ad on tv said, I think it was something with her name Granholm? in it. Kelley was the Ag for so long i can't remember the new one's name. See what she has to say. Hugs, Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 1999 Report Share Posted June 13, 1999 --- sherri borgquist <srb13741@...> wrote: > From: sherri borgquist <srb13741@...> > > Every county seat is supposed to have a law libary > at the > courthouse.........go and ask the law librarian for > the States info on > medical standards or if you have a major university > law school in your > area go there and you can get help............you > also should be able to > access all of you States Statutes from your > computer.......just do a > search using the state you live in and the word > statutes.......sherri > (alias lymebrain) > > Sherri- Thanks Ill try that. I know my lawyer will be able to get it but I want to see for myself what the standard is. I have gotten a little paranoid about everyhting and guess I wont believe it till I see it myself. L > > > > > From: lc lott <lclott@...> > > > > Hi all- > > Heres another update. Saw my lawyer on Fri and we > are starting the > > lawsuit against the LTD co who refuses to pay me > disability. Hoping > > just the threat of a lawsuit will make them cave > and pay me. > > When we discussed the suit against the docs the > problem we are going to > > have is: Did the 5 docs that failed to treat me > folow the standard of > > care in the state of MI? > > Any body have an idea how I can find out what the > standard of care is > > either in the state or even if there is a national > standard maybe by > > the CDC? I know they have the reporting standard > but do they make the > > standard of care for the US? > > Any info would be appreciated. > > L > > > > > _________________________________________________________ > > > > ------------------------------------------------------------------------ > ONElist members are using Shared Files in great > ways! > > Are you? If not, see our homepage for details. > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 --- Cslyme@... wrote: > From: Cslyme@... > > Hi , > I don't think there is a standard care for Lyme, > since there are two schools > of thought. The insuranace companies use the one > they want. Your best bet > is to get every article you can to dispute their " no > lyme " in Michigan > brains. All of us will probably testify for you > that we need/needed > treatment right away. > Love ya, > Connie, MI > > Connie- If there is no standard of care in MI that will really help my suit as I can have experts from other states evaluate my case and determine if appropriate care was given. I also told my lawyer that we would have a hard time getting any doc here to testify against these people because of what happened to Dr. Natole. So we will have to go out of the state to get expert witness testimony as far as a Physician. Thanks for the support with the testimony. I will mention that to my lawyer when I talk to him next week. I know he is going to consult with that friend of mine that is a surgeon that I worked with. He wants him to give his opinion on whether or not I recieved appropriate care in general. And I know Dave will tell him that there was a definate abandonment on several issues. Im ready to blow the " no lyme in MI " theory right out of the water. Ill be in touch. Love ya, L ------------------------------------------------------------------------ > ONElist: the best source for group communications. > > Join a new list today! > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 I know that most hospitals have the standard of care posted and you receive a copy too. I don't know if this standard of care goes for doctors outside of the hospital setting too. Kiana M. Rossi mailto:bornfree@... I've been slimed with Lyme ... And now it is time To end this strife And take back my life! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 --- Cslyme@... wrote: > From: Cslyme@... > > Hi , > Our new attorney general has a web site, but I can't > remember what the ad on > tv said, I think it was something with her name > Granholm? in it. > Kelley was the Ag for so long i can't remember the > new one's name. See what > she has to say. > Hugs, > Connie > > Connie- Ill try to look her up and if I cant find anything I guess I will call and see what info I can get. Thanks for the info. L ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > > > Come join one of over 165,000 e-mail communities at > ONElist! > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 1999 Report Share Posted June 14, 1999 Hi , let me know if you need us, Con Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 --- Cslyme@... wrote: > From: Cslyme@... > > Hi , > let me know if you need us, > Con > > Connie- Thanks I appreciate it. Even if nothing comes out of this suit for me personally at least it will make the facts known that there is Lyme in MI. I will continue to fight for all of us not only here in MI but every where else. Maybe when there are enough lawsuits established these egotistical docs will realize that this is a true problem and pts arent going to be mistreated and labeled any more. Maybe I should run for office hu? How about Gov. LOL Thanks again. L ------------------------------------------------------------------------ > Got an opinion? > > Make it count! Sign up for the ONElist Weekly > Survey now. > ------------------------------------------------------------------------ > Please send privately messages unrelated to lyme. > /archives.cgi/ > /archives.cgi/Lyme-Docs > Email: -subscribeonelist > You may substitute " unsubscribe " , " digest " , or > " normal " for > the word " subscribe " ( " normal " is the opposite of > " digest " ) > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 I am finding that my onocologist usually has patients that " either die or are cured " . Like, she doesn't know how to handle an ongoing patient. I am actually trying to get into a trial, and she seems excited that I'll be - um- going elsewhere. Someone else will probably have specific steps to take. But, I'm just writing to let you know: I know how you feel. My other choices for doctors are one that is retiring soon and has a bad bedside manner OR a doctor who speaks broken English. I chose the English speaking woman who was REALLY nice the first appointment... since then it has gone downhill. Email would be cool. Though, not helpful if she doesn't answer. Good luck! Tammy _____ From: [mailto: ] On Behalf Of Wood Things Sent: Tuesday, October 28, 2008 10:18 PM Subject: [ ] Standard of Care I haven't written for almost two years. I was Dx in February of '07 and referred to my oncologist. I had an introductory office call and one more about a month later. I've been on 400mg of Gleevec since the beginning. Last September the doctor did an BMB. She emailed me and said that things looked fine and to keep taking the Gleevec. I've emailed her a couple of times, the last time being in June of this year asking about the need for me to have a CBC blood test. She hasn't contacted me on her own at all. I have had several of the common side effects and am currently having a tough time with skin rashes. If anyone knows of a good treatment for the dry, red, itchy spots please fill me in................when I emailed my oncologist today and asked about the rash she asked me if my dermatologist knew what caused it...............and I was thinking that Gleevec must have caused it and she should have known that.........maybe I'm wrong? Anyway.........my main question is whether or not other CML patients have such a loose connection to their doctor.......or should I be expecting more contact, and more concern from my doctor????? I don't complain much.......maybe that's a problem? Thanks in advance for the replies. Don Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Oh no Don, Reading your email pretty much shocked me! Have you not been doing regular (monthly+) CBC's? What about 3 month PCR testing? If so, how do you receive your results? You should be seeing your hem/oc every 3 months. What milestones in response have you reached (meaning how is the gleevec working for you ) I would STRONGLY, STRONGLY suggest (tell) you to seek a hemotologist oncologist. Your skin rash can very distinctly be a side effect - and you should NOT be having to educate your Dr on this. This standard of care is terrible. Where are you located? I am sure anyone on the list will have a CML expert they can recommend. Do not hesitate- this is your life, your quality of life.. To give you an example - my husband was diagnosed ) in October 2006. He quickly reached all milestones in regards to response but has CBC done every month, PCR every 3 months , a visit with his hem/oc every 3 months as well. We can call her anytime with side effects and she would see us at any point between the visits. We requested a second bone marrow biopsy this year, it was done. I know fellow patients who have had CML for 8-9 years and they still see their Dr's every 3-6 months . Let us know how to help - shalyn From: [mailto: ] On Behalf Of Wood Things Sent: October-28-08 7:18 PM Subject: [ ] Standard of Care I haven't written for almost two years. I was Dx in February of '07 and referred to my oncologist. I had an introductory office call and one more about a month later. I've been on 400mg of Gleevec since the beginning. Last September the doctor did an BMB. She emailed me and said that things looked fine and to keep taking the Gleevec. I've emailed her a couple of times, the last time being in June of this year asking about the need for me to have a CBC blood test. She hasn't contacted me on her own at all. I have had several of the common side effects and am currently having a tough time with skin rashes. If anyone knows of a good treatment for the dry, red, itchy spots please fill me in................when I emailed my oncologist today and asked about the rash she asked me if my dermatologist knew what caused it...............and I was thinking that Gleevec must have caused it and she should have known that.........maybe I'm wrong? Anyway.........my main question is whether or not other CML patients have such a loose connection to their doctor.......or should I be expecting more contact, and more concern from my doctor????? I don't complain much.......maybe that's a problem? Thanks in advance for the replies. Don Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Hi Don, as far as the rash goes, I went to a dermatologist when I had a terrible rash, on gleevec, she did a biopsy and said it was from the drug. She treated it with a cortisone cream, it lasted several months and was the pits! No help with the doctor problem,I am looking for a new one myself because the one I have is so egotistical and jealous of Dr. Talpaz, I can't stand going to him. Good luck, Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) From: Wood Things <donanddawn47@...> Subject: [ ] Standard of Care Date: Tuesday, October 28, 2008, 10:18 PM I haven't written for almost two years. I was Dx in February of '07 and referred to my oncologist. I had an introductory office call and one more about a month later. I've been on 400mg of Gleevec since the beginning. Last September the doctor did an BMB. She emailed me and said that things looked fine and to keep taking the Gleevec. I've emailed her a couple of times, the last time being in June of this year asking about the need for me to have a CBC blood test. She hasn't contacted me on her own at all. I have had several of the common side effects and am currently having a tough time with skin rashes. If anyone knows of a good treatment for the dry, red, itchy spots please fill me in.......... ......when I emailed my oncologist today and asked about the rash she asked me if my dermatologist knew what caused it.......... .....and I was thinking that Gleevec must have caused it and she should have known that........ .maybe I'm wrong? Anyway...... ...my main question is whether or not other CML patients have such a loose connection to their doctor...... .or should I be expecting more contact, and more concern from my doctor????? I don't complain much.......maybe that's a problem? Thanks in advance for the replies. Don Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 10/28/2008 Hello Don, What you describe is not a loose connection to your doctor! It is downright neglect on the part of the doctor. You need to find someone who cares about you and your needs. Remember this about any doctor: the doctor is your paid employee and nothing more. The doctor is well-paid for the work he or she does, thus you are owed the respect and care your doctor was trained to provide. Your doctor is merely the technician who works on your body. Without you and his or her other patients, the doctor would be out of work. Would you keep a mechanic if he showed such indifference when working on your car,? Your health is certainly more important than your car. You and your insurance company) are the CEOs of your health. Good doctors always keep in contact with their patients by having blood work drawn and monthly evaluation appointments. The good doctors also encourage their patients to call them if they are concerned about something regarding their health. A call allows the doctor to assess the level of anxiety expressed by the patient: it cannot be done in an e-mail unless it is an e-mail chatting session. Find someone who cares about you to care for you! Sandie ---- Wood Things <donanddawn47@...> wrote: > I haven't written for almost two years. I was Dx in February of '07 and referred to my oncologist. I had an introductory office call and one more about a month later. I've been on 400mg of Gleevec since the beginning.  Last September the doctor did an BMB. She emailed me and said that things looked fine and to keep taking the Gleevec.  > I've emailed her a couple of times, the last time being in June of this year asking about the need for me to have a CBC blood test.   She hasn't contacted me on her own at all. >  > I have had several of the common side effects and am currently having a tough time with skin rashes.  If anyone knows of a good treatment for the dry, red, itchy spots please fill me in................when I emailed my oncologist today and asked about the rash she asked me if my dermatologist knew what caused it...............and I was thinking that Gleevec must have caused it and she should have known that.........maybe I'm wrong? >  > Anyway.........my main question is whether or not other CML patients have such a loose connection to their doctor.......or should I be expecting more contact, and more concern from my doctor?????   I don't complain much.......maybe that's a problem?  Thanks in advance for the replies.    Don > > > > > Quote Link to comment Share on other sites More sharing options...
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