Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Didn't want to do it... I just blurted it out. . . "Chronic Lyme is Real."
Today, while waiting for colonoscopy, I.V. getting started, nurse going over my med list, and she asks me about my Lyme diagnosis. Her boyfriend and dog both bitten 2 weeks ago.
For over 20 minutes, she peppered me with questions, and I answered with "just the facts."
Imagine, a nurse, a medical professional, in a Lyme epidemic area, with no education or knowledge about T.B.I's. It's just unreal.
I explained the lack of a rash, faulty western blots, capable tests for Lyme that the CDC refuses to ackknowledge, disclosure in Maryland that a negative western blot DOES NOT mean you don't have Lyme ( thanks Tincup),
transmission from mother to child, other insect vectors, mainstream doctors who refuse to treat, insurance companies who refuse to pay for LLMD's or meds .lyme symptoms, and Lyme prevention.
I also made sure to tell her to document everything and gave her the website to bayarealyme for free tick testing.
She thanked me and said how knowledgable I was. I said there are millions of Lyme sufferers like me searching for answers on how to get well.
She said there isn't a lot known about Lyme disease. I said, " But what is known and researched, and documented, should matter, not be discredited by the CDC.
Anyways, doc said I have diverticulosis. I said, add it to my long list of ailments.
Keep spreading the word warriors. Posts: 2977 | From Florida | Registered: Nov 2016
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
You go girl. That is our purpose to educate the medical establishment. Even though that is sad, someone has to do it.
I've done it countless times. And on most occasions it's because the medical person has a story to tell me about a loved one that had this bite and is now having strange sx.
My colonoscopy this year was to educate my nurse on her son's experience with tick bites.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You were able to read the open opportunity of her inquiry and demeanor well so, well done!
It was just common sense when someone very open who really wanted to learn more asks - vs. when you are in a vulnerable position during a procedure and receive demeaning "attitude" from those who have already determined there is no such thing.
Also, that she was willing to go beyond just the task at hand was a perfect opportunity.
It is important to know that sometimes we have to be cautious or our care suffers from their attitude toward us. I've had that happen many times more than their being receptive. But this worked out well.
If you were not able to give her ILADS or LymeDisease.org websites, I hope you remember her name and can send her a note with those it.
I'm glad you were such a good teacher in this instance. When someone says "not much known about it" it is really that not much in THEIR tight IDSA world will be filtered through as they dismiss it.
But if you send her a letter, be sure it's not opened by any staff member that it is clear to go right to her. Don't know if it would be possible for you to go back in person and catch her in the hallway sometime to hand it to her.
You might ask that she share the information with those open to it yet - why I suggest not being overheard talking in front of others - it's just to be aware that it her boss may not be so thrilled she is learning more.
With a letter sent or even left at the desk for her, some clerical staff who would open mail first, take it out of the envelope and flatten the page (common in the world for that to be just a thing that happens for convenience) . . .
but some staff are also trained to sniff out stuff about lyme. In some clinics, they actually get a bonus for not diagnosing any lyme. And, in some places, it's against the "rules" to entertain lyme literature and any incoming might not get where you intend - into her very hands.
It can vary state to state and clinic to clinic, though. In my state, several medical professionals have been officially censored for even talking to patients about lyme.
I was one of those they were talking to - I had gotten wind they that did treat in the past and was begging for their help and they kept pushing me away but I was did not understand and kept asking -- and they got into deeper trouble than they'd previously been.
Of course, all this is wrong and we still need to stand up to truth - to help others not be in the dark, too - it's just that it can be very tricky to figure out the best ways to do in each instance. -
[ 07-12-2017, 12:57 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Yeahh, Bonnie!!! A prize for you!! Posts: 6199 | From Brussels | Registered: Oct 2007
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