You said, "gary-i understand why you posted this and im not saying you shouldnt, i found it very interesting/sad. i think your intentions were to bring to light the very ugly side of this disease in hopes of raising awareness of what people are going through and how the medical community is abandoning sick people for various reasons. however i dont know if some people can handle it. then again i guess people know what they are getting into when they read forum good or bad".
Yes, you hit the nail on the head as to why I posted this sad story. I know it's a downer, and not inspiring or encouraging to read stories like this, but it's a sad reality of this disease. Sometimes new people come on this forum who were recently dx with Lyme disease by a GP, or ID doctor, and given three weeks of abx and were told everything will be just fine. We know that isn't usually the case.
When new people come here, it's up to us to educate them about
how important and urgent it is to seek treatment from a qualified LLMD or LLND. So many people have trusted their GP's when they were told that all they needed is 3 weeks of abx and problem solved. Patients should be able trust their doctors, but sadly, the medical community has done a great disservice to so many of us with Lyme disease. I don't want to see newly diagnosed Lyme patients come on this forum and get the impression that this disease is nothing to take seriously. It's up to us to help them understand the serious consequences of under treating this disease. We have a responsibility to do all we can to encourage people who come here to seek a qualified doctor so they don't come back to us later and say, "why didn't you warn me of the serious consequences of this disease?".
As Tina Garcia, who writes for the Public Health alert
so eloquently said, "The deadly consequences of the IDSA directing its membership to deny and ignore chronic Lyme disease patients is easily understood. If chronic Lyme patients seek help from 8,000 infectious disease specialists across the United States, then the majority of those patients desperately seeking help will be rejected and turned away. The diagnosis will be delayed, no treatment will be forthcoming and the infection will spread throughout the patient's body with irreversible damage over a period of years, just as occurs in tertiary syphilis. I am not referring to "some" or "a few" patients in this very real scenario; I am referring to the majority of patients. Such majority will eventually end up on disability costing our government millions of dollars in the long run..."
In my opinion, the blood of this couple who committed suicide is on the IDSA, CDC, AMA and the insurance companies. I know what it's like to live with late stage lyme disease. I don't think I could ever commit suicide, but I have, in the past, prayed many times to not have to wake up to another day of suffering. While I am doing so much better than I was in December (near death), I still suffer with this consequences of this disease, and very possibly will for the rest of my life. Damage has been done, and some of it may not be reversible. If only I had known ten years ago what I know now. I don't think we should make a point of over emphasizing tragedies like this, but neither should we keep quiet about
it. It's up to us to educate, encourage and help people understand the seriousness of this disease. After we've done our part then it's up them to make their own decisions.
In the mean time, we'll continue to do our part in encouraging, and supporting, newcomers (and "oldcomers") that come here, and give them hope that they can beat this disease with prompt and appropriate treatment. I believe this forum, as well as other Lyme forums, has probably saved countless lives. We may never know the many lives we've impacted in a positive way. I know my life has been positively impacted by this forum. Because of this forum I was given information that led me to a treatment protocol that is helping me get better. I've been blessed and encouraged by the people on this forum. I hope I can be an encouragement and blessing to others who come here as well. You (and many others here) have been a blessing to me JYW--thank you!