Guest guest Posted March 14, 2012 Report Share Posted March 14, 2012 First, there is NO typical bullseye rash, these typically show up in 30 - 50% of cases.... AND sadly, since this was anews report, everyone hearing this will now look for the rash and with no rash, they will think they do not have Lyme!! Well this lady (wife) talking about their situation got me tearing up... I felt very much for them knowing they have to payfor treatments out of pocket which is SO expensive... This was not the case before the IDSA (Infectious Disease Society of America) issued what many believe to be faulty Lyme guidelines in 2006. Before they did this, insurance paid for Lymetreatments.. And the husband just sitting there with the " Lyme stare " got his message across also... Terry, this couple did a good job, I am sure many watching here also teared up, getting their message out that Lyme isvery expensive and in the US insurance will not pay for Lyme treatments.. I don't think they could have gotten their message across any better, both failing health and expensive treatments they must pay for said it all.. I know from them sitting there and giving this interview, they are truly worried about their futures. I have to think this is consuming them. No vacations, no kids, they are dug in for the long term.. Very sad.... Please tell them for me Terry, they did a good job of getting their message out... Take care,Jim TV NEWS STORY Message List Reply | Delete Message #32735 of 32776 < Prev | Next > Here's the news story. Not what we wanted but definetely a step in the right direction. http://www.wnep.com/videobeta/88ee5a79-4207-4203-8fc7-0a3918c25638/Health/Healthwatch-16-Lyme-Disease Here's the Newspaper story which is not at all what we described http://thetimes-tribune.com/news/falls-family-struggles-with-lyme-disease-symptoms-1.1284723#axzz1p2g8c1Cw Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2012 Report Share Posted March 15, 2012 Jim, We spent no less than 1 hour with each reporter in a pre interview that they had a full understanding of the facts. We typed up notes and printed out information that they could take with them. I was slated to be part of the interview, however her presentation of their story was far more compelling than mine would have been, so I declined. I was getting choked up myself sitting there behind the camera watching them. There is another local TV news station and a radio station with great talk show hosts. They are next on the list. You are correct is is all consuming for them. has been seeing Dr. C in NY he was just taken off abx after 8 months which included a PICC line as well as oral with no results. He came by today and coiled for the second time at 432. Hopefully we get some hits Terry From: Jim in Jax Sent: Wednesday, March 14, 2012 6:49 PM To: Lyme and Rife Group Jim! Subject: Re: TV NEWS STORY First, there is NO typical bullseye rash, these typically show up in 30 - 50% of cases.... AND sadly, since this was a news report, everyone hearing this will now look for the rash and with no rash, they will think they do not have Lyme!! Well this lady (wife) talking about their situation got me tearing up... I felt very much for them knowing they have to pay for treatments out of pocket which is SO expensive... This was not the case before the IDSA (Infectious Disease Society of America) issued what many believe to be faulty Lyme guidelines in 2006. Before they did this, insurance paid for Lyme treatments.. And the husband just sitting there with the "Lyme stare" got his message across also... Terry, this couple did a good job, I am sure many watching here also teared up, getting their message out that Lyme is very expensive and in the US insurance will not pay for Lyme treatments.. I don't think they could have gotten their message across any better, both failing health and expensive treatments they must pay for said it all.. I know from them sitting there and giving this interview, they are truly worried about their futures. I have to think this is consuming them. No vacations, no kids, they are dug in for the long term.. Very sad.... Please tell them for me Terry, they did a good job of getting their message out... Take care, Jim TV NEWS STORY Message List Reply | Delete Message #32735 of 32776 < Prev | Next > Here's the news story. Not what we wanted but definetely a step in the right direction. http://www.wnep.com/videobeta/88ee5a79-4207-4203-8fc7-0a3918c25638/Health/Healthwatch-16-Lyme-Disease Here's the Newspaper story which is not at all what we described http://thetimes-tribune.com/news/falls-family-struggles-with-lyme-disease-symptoms-1.1284723#axzz1p2g8c1Cw Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2012 Report Share Posted March 16, 2012 Hi Terry, I figured after my long interview and then short clip on the news, they basically pick what sounds like the best part of the story to them, meaning facts probably aren't good news!! The more air time you can get, the more it sinks in to the listeners.. Talk shows may be more interested in the facts, so don't throw them out!! 8 months is a long time for IV and oral abx.. I know Dr Burrascano recommends 14 weeks minimum, but many are on them far longer... I believe Dr. C follows Burrascano's protocol.. Just coming off the abx, there may not be much of a Coil herx, usually need to be off the abx 2 - 3 months... No results after 8 months, that has to be tough.. Did he even feel worse while on this regiment? I felt horrible on IV Rocephin and oral Flagyl for 14 weeks and I would never do it again.. Jim > > Jim, > > We spent no less than 1 hour with each reporter in a pre interview that they had a full understanding of the facts. We typed up notes and printed out information that they could take with them. > > I was slated to be part of the interview, however her presentation of their story was far more compelling than mine would have been, so I declined. I was getting choked up myself sitting there behind the camera watching them. > > There is another local TV news station and a radio station with great talk show hosts. They are next on the list. > > You are correct is is all consuming for them. has been seeing Dr. C in NY he was just taken off abx after 8 months which included a PICC line as well as oral with no results. He came by today and coiled for the second time at 432. Hopefully we get some hits > > Terry > > From: Jim in Jax > Sent: Wednesday, March 14, 2012 6:49 PM > To: Lyme and Rife Group Jim! > Subject: Re: TV NEWS STORY > > > > > > First, there is NO typical bullseye rash, these typically show up in 30 - 50% of cases.... AND sadly, since this was a > news report, everyone hearing this will now look for the rash and with no rash, they will think they do not have Lyme!! > > Well this lady (wife) talking about their situation got me tearing up... I felt very much for them knowing they have to pay > for treatments out of pocket which is SO expensive... This was not the case before the IDSA (Infectious Disease Society > of America) issued what many believe to be faulty Lyme guidelines in 2006. Before they did this, insurance paid for Lyme > treatments.. And the husband just sitting there with the " Lyme stare " got his message across also... > > Terry, this couple did a good job, I am sure many watching here also teared up, getting their message out that Lyme is > very expensive and in the US insurance will not pay for Lyme treatments.. I don't think they could have gotten their > message across any better, both failing health and expensive treatments they must pay for said it all.. > > I know from them sitting there and giving this interview, they are truly worried about their futures. I have to think this > is consuming them. No vacations, no kids, they are dug in for the long term.. Very sad.... > > Please tell them for me Terry, they did a good job of getting their message out... > > Take care, > Jim > > > > > > > > > > TV NEWS STORY Message List > > Reply | Delete Message #32735 of 32776 < Prev | Next > > > Here's the news story. Not what we wanted but definetely a step in the right direction. > > http://www.wnep.com/videobeta/88ee5a79-4207-4203-8fc7-0a3918c25638/Health/Health\ watch-16-Lyme-Disease > > Here's the Newspaper story which is not at all what we described > > http://thetimes-tribune.com/news/falls-family-struggles-with-lyme-disease-sympto\ ms-1.1284723#axzz1p2g8c1Cw > Quote Link to comment Share on other sites More sharing options...
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