Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Hi Lovette, I would stress the doctors being at opposites and not working together, 3 weeks, your cured vs long term abx. And the lack of education for the doctors, the horrible CDC definition, for surviellance only, yea right, That is all i can think of now. Love ya, Con, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 lovette, when a story was done on me (staqte wide) i was very pleased how it turned out.....i told them the truth.....showed them some letters and med reports.....told them my feeling on things such as education and basically gave them a lesson in lyme.....they included my suit against my employeer and how i was getting screwed (with a rebuttal from them that was so funny i had to laugh) and they also included a little bit by our buddie lenny since it was a new jersy story.... all in all it went well.....i recieved a lot iof positive feed back from peolple and calls from people wanting to know more about lyme......i took it as an oppurtunity to educate and bring lyme before the public......as this was over a year ago before we got fallout press from the vaccine.......good luck however u decide to go..... Reid....nnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Dear Friends: I just got a call from a local reporter who wants to do a story on my family since we all have lyme disease. Do you have any suggestions as to what to say to these folks? I mean, if you wanted to get any message across, what would it be??? Of course, I'm sure they'll ask us about the new vaccine.... Lovette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 helen....i have seen u quoted .... i have also made quotes over the phone and will never do so again ....as u say the are edited .......however when they did my story the reporter came to my house....i have had better luck that way.....as far as the phone.....after they qutoed me as saying that the vaccine was a step in the right direction....but cut out the part about only if u r sure that u are not infected and how can u be sure when the blood test are not reliable.....i have shyed away....Reid...nnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Dear Lovette, I've had reporters call more than once. Sometimes they're rather vague about what they want. One let me talk awhile and only printed 2 sentences! The vaccine question is tricky. I told them that the idea is good but that there are too many unanswered questions yet and that it is too new and that it doesn't cover co-infections, along those lines. They do not want real details--in my cases. Don't answer right away if you don't feel well. One called me early AM. They will print whatever they want. Most are taping you--ask! If you do it in person, say how you feel. Your story is real. You're a lawyer! I said, " in my opinion, I feel " ----a lot. The biggest issue for me is to get across is that Lyme is a clinincal dx (most have to have that explained) that you are SICK( and improve with tx I hope) and that NO test is accurate---even the best. Also, I am adament about letting my own LLMD prescribe tx and have it honored--TOO much insurance interference--atrocious! Lyme can most certainly be chronic and that it is estimated that 1/10 of all cases are reported. Everyone I know knows someone with it or has it. If that isn't eepidemic, what is? Good luck Lovette. Whatever you say always helps us. Helen in NJ F. Mott wrote: > From: " F. Mott " <smott@...> > > Dear Friends: I just got a call from a local reporter who wants to do > a story on my family since we all have lyme disease. Do you have any > suggestions as to what to say to these folks? I mean, if you wanted to > get any message across, what would it be??? Of course, I'm sure they'll > ask us about the new vaccine.... > > Lovette > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 Hi Reid, I too will not do phone interviews again. You are so right. I have been asked by the editor to submit a story to The Lyme Times and several other papers. Even asked by Mosby Publishing Co to submit what I know about pain and Lyme towards a book written by a PhD RN I know who specializes in pain. I was flattered but way too sick. I want to do so many things. All in good time. I did send this RN something on pain and Lyme though. I need to find out if the book is finished. Many medical people are interested in Lyme and pain but like all else, must make a lot of noise about it before anyone takes notice.. Reid, I think you are great. Just because I may " seem " like I can spell here once in awhile, be assured that my brain is shot. No more OR nursing for me. It's OK. One day at a time. Today I found my glasses in the freezer. Good thing. Blind without them and I have one pair. Helen in northern NJ---GOOD LUCK LOVETTE!!! RMcmur3194@... wrote: > From: RMcmur3194@... > > helen....i have seen u quoted .... i have also made quotes over the phone and > will never do so again ....as u say the are edited .......however when they > did my story the reporter came to my house....i have had better luck that > way.....as far as the phone.....after they qutoed me as saying that the > vaccine was a step in the right direction....but cut out the part about only > if u r sure that u are not infected and how can u be sure when the blood test > are not reliable.....i have shyed away....Reid...nnj > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 1999 Report Share Posted July 3, 1999 Lovette, I Have been busy here in Michigan trying to get the word out about how diagnosing Lyme late and not early effects us. Many of us in Michigan have late stage Lyme before we even get diagnosed because of DR's being Lyme illiterate in this State; thanks to a State that says we only have Lyme in oneCounty in the Upper peninsula of Michigan; Physicians don't get educated about the disease. You can go in with the classic EM rash and be told it's a spider bite or an allergic reaction to an insect bite and be given cortisone which is counter indicated for this disease. I have been interviewed by four newspapers during the last month and have had others from the support group that I lead tell their stories. Sometimes we get misquoted by the press but it is good to get our stories out there. I have & the MLDA have had many phone calls from the articles. Many people have been educated, helped and diagnosed because of these efforts, so please tell your story. Most of us have horror stories to tell, people reading them don't want to end up in the same shape we are, so they call and request information. Others with similar symptoms call and realize they may also have the disease. It is worth the time and effort and miss quotes to get the word out there. If you know of others in your area with Lyme and they are willing to also be interviewed it lets the readers know there are many of us suffering the consequences of a Lyme illiterate medical community and a States that appears to want to keep it that way. If I could figure out how to use my scanner I would scan you the articles that were written about me and others in my area. Good luck .... Carol Quote Link to comment Share on other sites More sharing options...
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