Hi there! Lena was the only one that would come and visit me in the hospital; she's been a great friend to have -- so of course you may use my Open Letter. :) Please feel free to make as many copies as you want. And if I can help in any other way (a lot has happened since the publishing of that letter -- it was used by Pat Smith, Pres. of the Lyme Disease Associasion, as evidence that we need to change the treatment protocol) ..just let me know.
Plus.. back in 2003 in that hospital visit where the PICC Line was taken out (i.e. not the time Lena came to visit me at UWMC) -- I had 30 students a day crowding into my room asking me questions about what it's like to live with so many complications and secondary diseases/conditions on top of a multi-systemic disease.
The students really seem to want to learn about Lyme disease, Chronic Lyme and the differences/similarities -- not to mention the different courses of action for treatment depending on what stage of Lyme the person is in. If you ever need to talk more (I found a lot of students wanted to ask more but were reluctant to get into my private business.. but I'm not private when it comes to educating the public about Lyme disease and the many forms the spirochetes take (L-form, which is when they make cysts around the bacteria while said bacteria lays dormant in the system. Scientists actually have seen the bacteria share information with each other -- mating in a way -- and therefore it morphs into different bacteria. Plus the bacteria is 'sneaky' -- it'll hide. Literally, hide in any tissue, organ, system it pleases. One of its favourite spots is at the base of the brain where the spine starts down the neck. I have so many cognitive problems, some days I can't even speak. Good thing you caught me on a semi-clear day.
These bacteria are so hard to test for and get at.. I explained the oxygen thing in my open letter -- but these bacteria don't have cell walls! For all the MDs who like to state that the Lyme spirochete (Bb) is a "cousin" to the syphilus spirochete.. to which we reply: "Yeah, like the Stealth Bomber is a cousin to the *Sopwith Camel!"
*The red plane we would see Snoopy ride in the comics. ;) It's a very early biplane (two wings).
My mother and caregiver also wrote something from her POV, if you're interested I can send you that. (I would just need an email address to send it to.)
Re: Lyme diseaseastrcatFebruary 19 2006, 02:36:30 UTC
Thanks so much! I also perused the memories of lyme_disease and read a bunch of the articles you had posted throughout. It was a great addition to some of the journal articles I found doing database searches. I can't believe people compare syphilus and Lyme (I love the Snoopy plane comparison!) - other than the very very basic classification, they're so different!
You're right - I think students do tend to be more enthusiastic about learning thing. I guess we're still at the point where we're not jaded or set in our ways, and almost by force, have our minds open to all sorts of different ideas and information. I can understand why all the students would like to see you and question you - your case is so different than many of the more common conditions that we see every day. I hope they came away from the experience with increased knowledge and sensitivity to those living with chronic disease.
I really appreciate your openness and willingness to share your story in the interest of education - not everyone would be so strong. And you're right - Lena is the best friend in the world! We've known each other since 1st grade, and I'm so glad you've gotten to know her, as she's such a wonderful person.
Plus.. back in 2003 in that hospital visit where the PICC Line was taken out (i.e. not the time Lena came to visit me at UWMC) -- I had 30 students a day crowding into my room asking me questions about what it's like to live with so many complications and secondary diseases/conditions on top of a multi-systemic disease.
The students really seem to want to learn about Lyme disease, Chronic Lyme and the differences/similarities -- not to mention the different courses of action for treatment depending on what stage of Lyme the person is in. If you ever need to talk more (I found a lot of students wanted to ask more but were reluctant to get into my private business.. but I'm not private when it comes to educating the public about Lyme disease and the many forms the spirochetes take (L-form, which is when they make cysts around the bacteria while said bacteria lays dormant in the system. Scientists actually have seen the bacteria share information with each other -- mating in a way -- and therefore it morphs into different bacteria. Plus the bacteria is 'sneaky' -- it'll hide. Literally, hide in any tissue, organ, system it pleases. One of its favourite spots is at the base of the brain where the spine starts down the neck. I have so many cognitive problems, some days I can't even speak. Good thing you caught me on a semi-clear day.
These bacteria are so hard to test for and get at.. I explained the oxygen thing in my open letter -- but these bacteria don't have cell walls! For all the MDs who like to state that the Lyme spirochete (Bb) is a "cousin" to the syphilus spirochete.. to which we reply: "Yeah, like the Stealth Bomber is a cousin to the *Sopwith Camel!"
*The red plane we would see Snoopy ride in the comics. ;) It's a very early biplane (two wings).
One thing is I didn't use my real name on the version I set on the 'net, so please credit ©Lianne Antrim
My mother and caregiver also wrote something from her POV, if you're interested I can send you that. (I would just need an email address to send it to.)
Thanks for asking, what an honour!
Namaste.
Cheers,
Willo
Reply
You're right - I think students do tend to be more enthusiastic about learning thing. I guess we're still at the point where we're not jaded or set in our ways, and almost by force, have our minds open to all sorts of different ideas and information. I can understand why all the students would like to see you and question you - your case is so different than many of the more common conditions that we see every day. I hope they came away from the experience with increased knowledge and sensitivity to those living with chronic disease.
I really appreciate your openness and willingness to share your story in the interest of education - not everyone would be so strong. And you're right - Lena is the best friend in the world! We've known each other since 1st grade, and I'm so glad you've gotten to know her, as she's such a wonderful person.
Thanks so much again!
Cheers,
Cat
Reply
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