posted
Ok so I just really can't believe how ignorant and mis-informed the general public is about lyme disease and its risks. Yes I know that the reason behind that stems from the medical communities ignorance about it. The medical community has been ignorant about it for years therefore the general public hasnt been informed. quite sad
I went to my job last week and I couldnt believe how all my co workers were like "Lyme disease? whats that? how do you get that". I also had one person tell me "Wow, youre the only other person besides one of my friends th at Ive ever met to have lyme disease. I never hear of anyone having it" and then this one I thought was hilarious when one co worker said "Ya I told my mom you were out sick with lyme disease and she said she didnt even think people got lyme disease anymore". I told him its EPIDEMIC right now. and he was shocked. My boss asked me if i ever saw a rash and I said no. and then another co worker said "well i didnt think people got that unless they went into the woods. you been hanging out in the woods?". and i responded "never even set foot into a woods im not an outdoors girl". I'm totally convinved that I got my lyme by hanging around my friends dog. I used to cuddle with it alot and lay on the couch with it. The tick probably fell off him and onto me.
its sad how ignorant people are. little do they kno what a huge health crisis it is and how EASY it is to get. Ive come to think that when I tell people about my experience they get scared, Because they realize how mis informed they truely are about it.
I'm sure youve all witnessed this yourself when you have to explain to people what you have and what it is.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Been there.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
You think that's bad....I come into contact with many nurses in my job. When the opportunity arises, I tell them about getting Lyme. Their responses? Get a load of this:
"How'd you get that?" "Where did you get it?"
and one prize answer: "Lyme?..What's.....oh, yeah!"
When conversations run deeper, it's even more shocking. They know nothing. Real comforting, huh?
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Hambone
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Member # 29535
posted
There was a lady in town who had Lyme about 20 years ago. She caught it in the acute stage and it cleared up pretty quickly.
So now people think I should be like her. They say, "Oh is that all it is? Yay! All you do is take antibiotics and then you'll be well."
And many are wondering why I'm not well yet, as if I must be milking this illness for all it's worth.
Posts: 1142 | From South | Registered: Dec 2010
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posted
^ exactly. I think most of the population just thinks you take antibiotics and in a few days youre better. Like when you treat strep throat or an ear infection. Little do they know about the toxicity of this bacteria and the herxing and all that junk
Posts: 995 | From somewhere out there | Registered: Oct 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I live in the land of 3 weeks doxi and have a nice life. I want to scream.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Camp Other
Unregistered
posted
I think that a lot of people are ignorant about it and I'm betting a lot of us knew significantly less about it until we got into the situations we are now in.
I knew about the bulls-eye rash and what deer ticks were growing up, but I never got bit by one back then (that I know of, and I was pretty much a go-getter and functional until my early 30s). But I myself did not know how serious Lyme could be. I was ignorant, too, and it's not something that was part of my daily conversations.
Here, we're *swimming* in it. Living it, and not by choice. The sad thing about others' ignorance is that they are just as vulnerable as I was - anyone is; anyone can get this disease.
How do we teach them and let them know how it's really like and what the issues are without becoming one of us (heck no)? CALDA does education and outreach. Maybe if any of us are healthy enough to do a short presentation in public schools for free now and again, that would help protect the kids. But the general public and the media still doesn't get enough of the right exposure and sadly learn about this stuff from things like the Tribune article.
i know some people hand out flyers at local farmers markets when it's warmer weather, and take pamphlets with them to doctors' offices and dentists' offices - anywhere where anyone will listen where it isn't considered rude and there is some context for opening the conversation on Lyme Disease.
I keep thinking one of the ways to signal boost the education would be for all Lyme patients to make a web page somewhere with the information about it including citations on persistence and post it, along with strategically used keywords, that the info would at least go up in Google ranking when someone looks up "Lyme Disease".
That and to get more media outlets to agree to talk about the possibility of persistence and find some microbiology students willing to blog about it and talk to reporters about it. Who would be a good source to approach? Utne Reader wrote something recently that was supportive... maybe looking at the "best of the progressive press" they reprint from could give someone ideas?
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posted
When my daughter was first diagnosed with LD, my initial reaction was "Thank God! A few weeks of abx and she'll be fine" After being dx'ed with CFS and trying treatment after treatment to no avail, the dx of LD was a welcome relief.
Ha! Not so much. You all know how it goes.
The more I talked to people the more I learned that so many in my area are/were very very sick with TBD. I have since come to find out that we live in an endemic/epidemic area.
Sadly, most go untreated or under-treated in our epidemic region. But I have encountered local docs who "get it"--a hematologist and a foot specialist believe it or not.
One ER nurse I met a few years ago had a very, very sick son at the HS level. The school district he was in opted to not provide him with an education or any services he might have been entitled to.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Camp Other
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posted
AlanaSuzanne,
Sorry to hear so many in your area are and were very, very sick. I swear, we can't all have fibromyalgia and CFS - whatever those are.
For what it's worth, I've seen a specialist who didn't disbelieve me when I mentioned Lyme Disease persisting or relapsing - he'd gotten Bartonella a decade ago from a cat and while he was treated for it, still has pain and problems today that he lives and works with. It was a relief to hear of another doctor validating my experience... makes me wonder just how many are out there who question and wonder even if they aren't vocal believers or advocates. If we could find them somehow and ally ourselves with them, maybe this tide could turn?
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posted
Lymegal, I realized early on we were in the position of having to clue people in.
So I typed up various size flyers - 1/8 - 1/4 - 1/2 page sizes, with varying amounts of info and suggested websites to go to for info. I've been handing them out for four years now.
I also hit all the booths at appropriate expos here, and people come from all over the country to display their goods and services.
It's also possible to get some brochures. You can get free ones from the LDA.
If you want to help people learn, you could think about how you would be most comfortable doing so.
Posts: 13117 | From San Francisco | Registered: May 2006
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I told my ND that I would be better in a month, all it was going to take was low dose antibiotics and sheer determination and the will to get better.
It is now over a year later. The pain that I have experience all year (and for the last 3 years) has been torture. I have just started nuerontin to help with the extreme nerve pain.
I am also extremely exhausted. It feels like an elephant is sitting on my chest.
I am so scared that i will never get better, but I did just start a cyst buster, so I still have a little hope left.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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