posted
Next Wednesday, I will be meeting with a writer to discuss access to medical care for Lyme disease and other TBDs. I would like to be able to discuss, with accuracy, stories besides my own, and so am soliciting stories from other Lyme patients.
Please tell us your story, making sure to cover the questions listed below. Please email your replies to Suzanne at [email protected] with a copy to David at [email protected].
Feel free to respond either in direct response to each individual question, or in essay form.
We want very much to hear both from people who live in Texas and those who live outside of Texas. All of your stories are important to our work.
We will protect your privacy, and your names will not be used in published articles without your express consent.
Here is what would be helpful for us to know: (if you do not have exact answers, please approximate to the best of your ability)
- Where do you live currently? (City and state if you are comfortable sharing that information, or just your state as we need to know whether you are living in a state which has passed legislation protecting LLMD's and/or requiring insurance coverage for treatment)
- When, where, and how did you became ill?
- How difficult was it for you to find a doctor who would (a) diagnose you; and (b) treat you? (e.g., how many doctors did you see before getting a diagnosis, how much time and money did you spend on treatment for other illnesses with which you were misdiagnosed, how far did you have to travel to find a Lyme-literate medical professional, any other information which you feel is relevant to your journey to diagnosis and treatment; or are you still struggling to find it)
- How much sicker did you become while searching for a proper diagnosis and treatment?
- Does, to your knowledge, your doctor have charges pending by the state medical board related to treatment of chronic Lyme which could threaten his/her license?
- What other information do you feel is relevant to your access to competent Lyme care?
- If you live in a state which has passed legislation protecting LLMD's and/or requiring insurance companies to cover treatment, do you feel that you have benefited from this legislation and, if so, how?
- Would you be willing to speak directly with the writer to provide more detail about your story?
This writer wrote about the challenges of access to Lyme treatment several years ago, and is trying to determine what, if anything, has changed.
Your stories will also help David and I with our work to provide supportive information to demonstrate the need to protect Lyme-literate medical professionals in Texas which we hope will prove beneficial to patients and doctors in other states, as well.
If you have any questions, please do not hesitate to ask.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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bettyg
Unregistered
posted
Suzanne, you received my book story; you asked for it you know! LOL
Yes, I always get involved in advocacy issues; someday, we in Iowa will need your help. So got to stay on the good side of all you lymies working for lyme bills, LLMDS, etc.
YOU helped me so much right after my correct chronic lyme dx 6-04 after being misdx 34 years; this is payback Suzanne!
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Yes, I did get your story; thank you! I know I can always count on you. You're the best!
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Please share your stories. This is a writer who, though preferring to remain unidentified at this time, could really help raise the profile of Lyme in TX and possibly outside of Texas, as well.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Thanks to all who have shared their stories with us. We will, though, need more if we are to be able to demonstrate to officials in a position to help us the difficulties faced by the Lyme patient population at large.
This is your fight so please help us.
If we are not hearing from more of you because you still have concerns about who we are, we need to know that, too, so that we can find a way to reassure you.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
I just emailed my story -- it was very therapeutic to get it all down in one place! Thanks for the opportunity, and good luck with the project. And let me know if I can help you further.
Did you ever get Tincup's 4-6 Q/A of 100 lymies on: how many drs. did you see; cost of doctoring while you got correct dx; how many pills are you on, etc?
Perhaps it's in Treepatrol's newbie links; I don't know; I don't have time to go look.
TC is very busy herself w/her state's lyme bill. Bettyg
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Yes, I've just received your email. Thank you for taking the time to write a detailed accounting of your story.
As I said in my email reply message to you, it matters not that you are not in Texas. We must all work together, even if change will come one frustratingly slow state at a time.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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It was super-easy. I just did a brain dump, and got in a little rant in the bargain! I figured you guys will slog through whatever bad prose I send you and pull out what's helpful.
Again, good luck, and thanks for making an effort.
Do you have a website that describes your project?
We are working on a web site, but it will take some time.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
my story has been sent. Hope it helps!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Yes, thank you very much for your efforts to assist us.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
I am meeting with the writer tomorrow at lunch. I want to thank the 32 people who took the time and care to send us your stories.
If you have not submitted your story yet but would like to, please feel free to do so at any time. We have a long road ahead of us, and everyone's story will help us convey our message.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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bettyg
Unregistered
posted
32 stories; that's not bad in 1 week's time I believe!
Suzanne, may it be a very productive, lyme meeting tomorrow. Fill us in as time permits please. Bettyg
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