although social media was did not lead me to my diagnosis, it has lead me to trying different protocols. I can often find the stories told through social media scary, but Lyme is a scary disease. It has allowed me to connect with other Lyme patients and learn from them. If I feel alone, i can access social media to read about others and communicate with them through online chat sites and personal blogs.
Social media has been an encourager and a discourager of my diagnosis. I have learned alot from different treatments and have been confused alot by so many treatments. I can no longer work due to the illness but I am a medical professional and the medical social media is terrible and not educated. The web sites I visit for individuals with Lyme diagnosis are very encouraging and help me make it through my day. I have also been able to get resources through online social media that I would have not otherwise. In Texas the social political and medical media is skewed and misinformed. Unfortunately it has taken our only LLMDs licenses away and has given Lyme a terrible image.
I had a doctor suggest Lyme disease to me as one (of several) things that could possibly be making me so sick, but she never followed through with testing me for it. So I got online and researched it. I discovered that I had an alarming number of the symptoms. After years of being misdiagnosed, that website was ultimately what led me to my diagnosis.
I too had a health practitioner suggestvlyme as a possibility. Social media and on line research helped me to believe lyme is whatvwas wrong with me. It led me to the video "Under My Skin" which I found so helpful and it led me to my LLND.
It has impacted my Lyme diagnosis by showing me that I am not crazy that each and every Lyme patient is going through what I have gone through or will go through. I would of never been so educated by the social network if I did not follow on a daily bases..I have learned so much and I owe it all to my social network..
Social media provides an opportunity for education about the lifestyle associated with Lyme Disease. Many ideas are discussed that give me questions and information I never thought of by myself. I have found it a benefit when people share where they purchase equipment and supplements at reduced prices, and resources that may be accessed to help navigate the pitfalls in the social systems unprepared for Lyme (i.e. dealing with insurance, how to find a good LLMD, what are the political issues surrounding Lyme Disease, and public awareness).
Social media is ultimately what led me to even consider Lyme Disease and then what led me to the right Dr. for me. I also found out about how to eat right and what supplements worked. And I would come online and connect with others when I was scared and feeling alone with my illness. It gave me hope to see some people get better and to know I wasn't alone. I don't think I would have learned about all the steps that worked for me if it wasn't for the suggestions of others online. I stay active in the Lyme social networking world even now that I'm better because I feel like it's a family and I'm really grateful that we can share what we've been through with each other and encourage each other along the way.
I love to see what people post of Facebook with links to current research, articles & websites having to do with different topics related to Lyme (such as detoxing, diet, Candida ect). It is wonderful to not have to be searching the internet all on my own.
Also, I love to hear about others struggles and victories related to their personal Lyme journey. It puts validity on my illness and reminds me it truly is a disease not just an illusive sickness that I have been dealing with for over a decade.
Lastly, I love to see the passion within the other Lymies for advocacy. As a whole we are sensitive to others struggles with Lyme and the reality that this disease will continue to spread in the coming years. We want to raise awareness and fight for a better care for future Lyme patients. It is a great way to advocate for Lyme.
Social Media has been important for me in that it allows me to connect with other Lyme sufferers. This can be a lonely disease when you have physicians telling you over and over that "There is no Lyme Disease in California"
It has not only helped me in connecting with others but also helped to build a support system and friendships...all vital in dealing with this disease. When you have a rough days the Lyme community is there and likewise if someone out there is having a tough time...we reach out and support each other!
It's been an important tool in not only recieving information such as protocols and herbs and vitamins, but also in sharing information about support groups, walks, gatherings, conferences etc.
Its heart breaking to see how many people out there are suffering with this disease. More and more newcombers are joining the Lyme social communities...sad yet confirmation to know you're not crazy, the disease is real, you're not alone, so many to walk this road with you...
Reassuing to know so many are out there are fighting along with you against the injustices brought against us by so many medical proffesionals and our own government who refuse to believe and/or treat us properly.
If I can convince one parent in our Lyme-endemic region to do daily tick checks on their kids, all of this is worth it. My Lyme is late-stage disseminated due to the ignorance of local docs. I do not want others to follow in my footsteps, so I use social media as a soapbox.
The most important thing that social media has provided me is with support. Knowing there are many people out there makes it easier to deal with. Its also a good source to find out what other people have tried.
although social media was did not lead me to my diagnosis, it has lead me to trying different protocols. I can often find the stories told through social media scary, but Lyme is a scary disease. It has allowed me to connect with other Lyme patients and learn from them. If I feel alone, i can access social media to read about others and communicate with them through online chat sites and personal blogs.
ReplyDeleteSocial media has been an encourager and a discourager of my diagnosis. I have learned alot from different treatments and have been confused alot by so many treatments. I can no longer work due to the illness but I am a medical professional and the medical social media is terrible and not educated. The web sites I visit for individuals with Lyme diagnosis are very encouraging and help me make it through my day. I have also been able to get resources through online social media that I would have not otherwise. In Texas the social political and medical media is skewed and misinformed. Unfortunately it has taken our only LLMDs licenses away and has given Lyme a terrible image.
ReplyDeleteI had a doctor suggest Lyme disease to me as one (of several) things that could possibly be making me so sick, but she never followed through with testing me for it. So I got online and researched it. I discovered that I had an alarming number of the symptoms. After years of being misdiagnosed, that website was ultimately what led me to my diagnosis.
ReplyDeleteI too had a health practitioner suggestvlyme as a possibility. Social media and on line research helped me to believe lyme is whatvwas wrong with me. It led me to the video "Under My Skin" which I found so helpful and it led me to my LLND.
ReplyDeleteIt has impacted my Lyme diagnosis by showing me that I am not crazy that each and every Lyme patient is going through what I have gone through or will go through. I would of never been so educated by the social network if I did not follow on a daily bases..I have learned so much and I owe it all to my social network..
ReplyDeleteSocial media provides an opportunity for education about the lifestyle associated with Lyme Disease. Many ideas are discussed that give me questions and information I never thought of by myself. I have found it a benefit when people share where they purchase equipment and supplements at reduced prices, and resources that may be accessed to help navigate the pitfalls in the social systems unprepared for Lyme (i.e. dealing with insurance, how to find a good LLMD, what are the political issues surrounding Lyme Disease, and public awareness).
ReplyDeleteSocial media is ultimately what led me to even consider Lyme Disease and then what led me to the right Dr. for me. I also found out about how to eat right and what supplements worked. And I would come online and connect with others when I was scared and feeling alone with my illness. It gave me hope to see some people get better and to know I wasn't alone. I don't think I would have learned about all the steps that worked for me if it wasn't for the suggestions of others online. I stay active in the Lyme social networking world even now that I'm better because I feel like it's a family and I'm really grateful that we can share what we've been through with each other and encourage each other along the way.
ReplyDeleteI like what Lisa said too about social networking showing us that we're not crazy. I felt the same way!
ReplyDeleteI love to see what people post of Facebook with links to current research, articles & websites having to do with different topics related to Lyme (such as detoxing, diet, Candida ect). It is wonderful to not have to be searching the internet all on my own.
ReplyDeleteAlso, I love to hear about others struggles and victories related to their personal Lyme journey. It puts validity on my illness and reminds me it truly is a disease not just an illusive sickness that I have been dealing with for over a decade.
Lastly, I love to see the passion within the other Lymies for advocacy. As a whole we are sensitive to others struggles with Lyme and the reality that this disease will continue to spread in the coming years. We want to raise awareness and fight for a better care for future Lyme patients. It is a great way to advocate for Lyme.
Social Media has been important for me in that it allows me to connect with other Lyme sufferers. This can be a lonely disease when you have physicians telling you over and over that "There is no Lyme Disease in California"
ReplyDeleteIt has not only helped me in connecting with others but also helped to build a support system and friendships...all vital in dealing with this disease. When you have a rough days the Lyme community is there and likewise if someone out there is having a tough time...we reach out and support each other!
It's been an important tool in not only recieving information such as protocols and herbs and vitamins, but also in sharing information about support groups, walks, gatherings, conferences etc.
Its heart breaking to see how many people out there are suffering with this disease. More and more newcombers are joining the Lyme social communities...sad yet confirmation to know you're not crazy, the disease is real, you're not alone, so many to walk this road with you...
Reassuing to know so many are out there are fighting along with you against the injustices brought against us by so many medical proffesionals and our own government who refuse to believe and/or treat us properly.
If I can convince one parent in our Lyme-endemic region to do daily tick checks on their kids, all of this is worth it. My Lyme is late-stage disseminated due to the ignorance of local docs. I do not want others to follow in my footsteps, so I use social media as a soapbox.
ReplyDeleteThe most important thing that social media has provided me is with support. Knowing there are many people out there makes it easier to deal with. Its also a good source to find out what other people have tried.
ReplyDelete