Boy did I love this video you made!! I've been saying this over the past couple months to my husband. Its the truth LYME IS EVERYWHERE so why are these doctors seeing it? Counting on my fingers I've had at least 7 people who've called me in just the last couple months who went the their doctor for help because they got bit. Like you said some got 14 days antibiotic 7days or none. Guess what half of them have called me telling me there symptoms are back and stronger than ever. When will it end!?
Thanks Ali. It's very scary to me. The prospect of a population infected with Lyme is a nightmare scenario. We've just got to keep spreading the word and telling our friends, neighbors, and communities. People think that I'm funny because when I walk around outside very much I have my pants tucked into my socks. That's fine. The good thing is that some of them now do this. Small differences.
Very true Steve, until the insurance companies and the politicians are forced to change the GP's are really co -erced into practicing bad medicine. It does a dis service to everyone. The only thing that's gonna possibly change this is an outspoken Lyme community.
I hear ya Clark, we gotta raise hell with the CDC, the docs and the politicians. I'm not sure where to begin yet and its hard when feeling so sick, but it really is up to those of us who have been impacted by this to bring about change.
Great to see you again, you are looking really good!!
Thanks Thane. I have been able to change my GP's mind. He's not an LLMD, per se, but now, when he sees a nasty bite he goes straight to the doxy. I know this because he has been treating my father for early onset. This Doc is not a bad man, but the news is not out on the medical grapevine that this preventative approach is far more preferable to waiting and trying to do detective work and give time for inaccurate test results to come in. This huge first step change has to become standard.
Oh, yes. And also learn how to read your own test. You may find that you and your LLMD have profound disagreements about what your diagnosis is, and what the treatment should be. Just because a Lymie finds and LLMD doesn't me that he or she has found the right LLMD for them. We really have to be vigiilant in every single step of this process.
I agree. I have so many people who come to me with questions and I try my best to give them answers but it would make things so much better for EVERYONE if the doctors could be competent enough to deal with the clear, early cases. My dad had a very classic early case and thankfully, knowing what I've been through and because he was intent on getting treatment, he got a month of Doxy and has been fine. But the doctors wanted to brush him off at first even with the classic bulls eye. Frustrating!
I had the very same experience with my Dad... fortunately he and I were able to convince him that he needed to change his entire approach to early onset Lyme infection. Even though I got infected because of what this doctor didn't iknow, it gave me great hope to know that he is a reasonable and intelligent man who was open to changing his mind. Just wish someone else had talked to him before I came along.
$250 is cheap in my world. it's a hell of a lot cheaper than the 100k+ that we've had to spend on just me. I have heard the steroid treatments. I've heard of 10+ bites of just my friends that are educated this summer and our dog got bit last night. How do we push for change? Not sure, more educated patients who recognize when they're not being properly treated. We can't change all GP's but we can change how we approach our healthcare.
I completely agree. We've got to be firm about our treatment. When one of my actors couldn't get antibiotics for his bullseye rash, he went to the ILADS site and printed the treatment protocols and told the doctor he wanted ABX as the protocol called for. The doctor said that she wouldn't do it, so he asked that the doctor put into writing the reasons that she would not give him a legitimate treatment. The doctor reconsidered and gave him the Doxy. We've got to be firm.
I have seen this time and time again. I am an 'out' Lymie and I get a lot of questions and I do my very best to give them the most up to date information and to send them to doctors that I've seen and tests that I've had and I still hear negative things from doctors. It's sad that a lot of times these people will just trust the system and the doctors that they see. It scares people that the more sensitive tests are more costly so people hold off.
Boy did I love this video you made!! I've been saying this over the past couple months to my husband. Its the truth LYME IS EVERYWHERE so why are these doctors seeing it? Counting on my fingers I've had at least 7 people who've called me in just the last couple months who went the their doctor for help because they got bit. Like you said some got 14 days antibiotic 7days or none. Guess what half of them have called me telling me there symptoms are back and stronger than ever. When will it end!?
alicat4377 2 years ago
Thanks Ali. It's very scary to me. The prospect of a population infected with Lyme is a nightmare scenario. We've just got to keep spreading the word and telling our friends, neighbors, and communities. People think that I'm funny because when I walk around outside very much I have my pants tucked into my socks. That's fine. The good thing is that some of them now do this. Small differences.
cleric1104 2 years ago
Very true Steve, until the insurance companies and the politicians are forced to change the GP's are really co -erced into practicing bad medicine. It does a dis service to everyone. The only thing that's gonna possibly change this is an outspoken Lyme community.
cleric1104 2 years ago
I hear ya Clark, we gotta raise hell with the CDC, the docs and the politicians. I'm not sure where to begin yet and its hard when feeling so sick, but it really is up to those of us who have been impacted by this to bring about change.
Great to see you again, you are looking really good!!
thane17 2 years ago
Thanks Thane. I have been able to change my GP's mind. He's not an LLMD, per se, but now, when he sees a nasty bite he goes straight to the doxy. I know this because he has been treating my father for early onset. This Doc is not a bad man, but the news is not out on the medical grapevine that this preventative approach is far more preferable to waiting and trying to do detective work and give time for inaccurate test results to come in. This huge first step change has to become standard.
cleric1104 2 years ago
I can relate. I tell everyone to get a copy of their tests to make sure they got the wrong kind, etc.
TheAngelwhisperer 2 years ago
Oh, yes. And also learn how to read your own test. You may find that you and your LLMD have profound disagreements about what your diagnosis is, and what the treatment should be. Just because a Lymie finds and LLMD doesn't me that he or she has found the right LLMD for them. We really have to be vigiilant in every single step of this process.
cleric1104 2 years ago
I agree. I have so many people who come to me with questions and I try my best to give them answers but it would make things so much better for EVERYONE if the doctors could be competent enough to deal with the clear, early cases. My dad had a very classic early case and thankfully, knowing what I've been through and because he was intent on getting treatment, he got a month of Doxy and has been fine. But the doctors wanted to brush him off at first even with the classic bulls eye. Frustrating!
penguini1982 2 years ago
I had the very same experience with my Dad... fortunately he and I were able to convince him that he needed to change his entire approach to early onset Lyme infection. Even though I got infected because of what this doctor didn't iknow, it gave me great hope to know that he is a reasonable and intelligent man who was open to changing his mind. Just wish someone else had talked to him before I came along.
cleric1104 2 years ago
$250 is cheap in my world. it's a hell of a lot cheaper than the 100k+ that we've had to spend on just me. I have heard the steroid treatments. I've heard of 10+ bites of just my friends that are educated this summer and our dog got bit last night. How do we push for change? Not sure, more educated patients who recognize when they're not being properly treated. We can't change all GP's but we can change how we approach our healthcare.
peterpauliepan 2 years ago
I completely agree. We've got to be firm about our treatment. When one of my actors couldn't get antibiotics for his bullseye rash, he went to the ILADS site and printed the treatment protocols and told the doctor he wanted ABX as the protocol called for. The doctor said that she wouldn't do it, so he asked that the doctor put into writing the reasons that she would not give him a legitimate treatment. The doctor reconsidered and gave him the Doxy. We've got to be firm.
cleric1104 2 years ago
I have seen this time and time again. I am an 'out' Lymie and I get a lot of questions and I do my very best to give them the most up to date information and to send them to doctors that I've seen and tests that I've had and I still hear negative things from doctors. It's sad that a lot of times these people will just trust the system and the doctors that they see. It scares people that the more sensitive tests are more costly so people hold off.
peterpauliepan 2 years ago