lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Once it starts happening to more and more drs families, change will happen.
YES-i have said this for a long time and seen it happen many times in my life...however...the big pic is moving so slow.
im still disappointed about coverage of rallys...
it makes me more and more curious about conspiracy theories...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I know Kayak, but we never had the medium of Twitter, Facebook, or Youtube. Now drs can't just say "oh stop reading the internet" because more and more people are communicating with each other.
I don't see a conspiracy. It's simple to me, insurance doesn't want to pay, they lobby in Washington. Money talks, laws stay the same, drs dismiss a real thing in fear of losing their livelihood.
posted
This is so true. My GP has a partner who never believed in the existence of chronic lyme. This past year however his son's girlfriend has become bedridden from what turned out to be chronic lyme and babs. He ended up doing a ton of research and now believes in the existence of chronic lyme and actually encourages his patients to go to a LLMD if he suspects Lyme is an issue.
It (sadly) often does take people being directly affected by something in order for them to change their perpective. I agree fully with Droid that change is glacially slow at times, but it is happening.
I look forward to the day when no one with this hellish illness is dismissed outright and I think we are inching ever closer to that reality. Jess
Posts: 870 | From ct | Registered: Nov 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i also believe drug companies lobby to stop lyme treatment cuz they make so much more on drugs that cover up symptoms but dont cure the cause
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I agree change is happening. More and more people have heard of Lyme, or "Lyme's," as the case may be, and more are starting to know what it does. Keep talking and sharing info, folks, and let's help turn the tide.
Posts: 13116 | From San Francisco | Registered: May 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
This is how LLMD's are born, so to speak.
Usually either they are sick with Lyme or a family member is, which opens their eyes.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
It really is beneficial, at least for me, to see that change in the tide.
We all have those days where things don't look so good, but then you read articles written by ilads or turn the corner, and you realize that not only are you not alone, but that you have a tremendous amount of support behind you.
I also don't think we can underestimate our role in helping to facilitate that change. For example, there is a member on here that managed pull together three separate lyme awareness events in one day; in the state of Alabama nonetheless. That's pretty remarkable.
It's definitely not going to happen over night, but if we keep our heads up and keep grinding, we're going to be on top soon.
Posts: 169 | From The Poconos | Registered: Jun 2011
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posted
I got Lyme articles into several local publications this month! That's what I suggest doing for the May month, is calling publications around March and asking them if they want an alert article.
Every year I've managed to get a couple articles written and published in newsletters/newspapers/magazines. They hopefully get read by 100s, even 1000s of people, if the publication has a big enough circulation.
Think of which ones you'd like to contact for next year. Many say no, but some say yes, and are quite appreciative of our efforts! That helps get the word out.
My biggest spread perhaps so far - getting the word out to all the garden clubs in CA - that happened because a woman overheard me talking at the Flower and Garden show and suggested the idea of my writing an article that she would send out. Let's go for publication numbers...
In the meantime, with summer coming up, any of us who are able can pick up the phone and call a summer camp, a horse camp, a garden club, etc and let them know you're calling because you're concerned about ticks (even other insects) and would like to help inform them about public safety.
People can say no, but they can also say yes. Just go for the averages - some are going to be interested.
Posts: 13116 | From San Francisco | Registered: May 2006
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
That is awesome Robin! Kayak, yeah I agree. The Pharm companies need the MS, Parkinsons, Fibro, RA, CFS, ME patients to sell drugs to.
But insurance companies would save a lot of money getting those patients better and let them move on with their lives. Not paying for lifetime symptomatic scripts.
Not to mention it's the right thing to do. I know that doesn't matter.
posted
We can effect change. I have made a decision to be the "Lyme educator" to my 200+ friends on facebook.
Lymedisease.org and Better Health Guy are always posting great articles on facebook that can be shared.
Every time I post one I get a mini panic attack, I was raised to be private about these things. But I know it's the right thing to do, and I am doing it.
I only post the really good ones, and I only post 1 or so a week, just so they will take them seriously. I figure if I do it too much they will just start ignoring them.
Posts: 845 | From Northeast | Registered: May 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Up until a couple years ago everyone from our area had to travel at least 8 hrs by auto to see a LLMD.
Now we have 2 LLMDs within 2 hr drive. Both of these doctors became LLMD because lyme had struck their loved ones and/or themselves.
Even MDs looking for good medical care are put on the "we don't have lyme here roller coaster".
TG, for these 2 LLMDs!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
That's a good point Pam. Two of the doctor's in my area became llmd's because they were personally infected with lyme (as were some of their family members).
Posts: 169 | From The Poconos | Registered: Jun 2011
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posted
The tide is going our way, because more and more people are getting Lyme and co-infections and finding out they have them, which affects their families, their friends, their work, etc.
So, build on that unfortunate circumstance and let as many know as you can. With all of us, the numbers will add up and one day, it will be as known as AIDS is, etc.
And in the meantime, your reaching out to even one person can mean alot to that person!
Posts: 13116 | From San Francisco | Registered: May 2006
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Exactly. You never know who you could be telling that could make a difference. I had one conversation with a girl and she decided to get tested (she was pos.)
Now she make video's, blogs, and attends rallies. She was lucky and got better quick.
I understand why people are not vocal about it.
But if you are on the fence about whether to talk about it or not and it won't affect you negatively, tell everyone you can.
It's therapeutic and will eventually lead to law changes.
Besides, thirty-some yrs of silence has gotten us nowhere.
posted
I echo what Droid conveyed above. We need to be vocal about what our illness is with as many people as possible. It is indeed therapeutic and it also can help to address some of the ignorance about this illness.
For instance, I have a friend that I used to work with when I waitressed and she asked me how things were. I told her that I have been sick with Lyme and other tick borne illnesses. She was pretty ignorant about lyme but wanted to know more and is now educated about the illness and helps me when I post activist stuff like petitions on my Facebook for Lyme.
A lot of good can come out of telling the truth about what you are suffering from. As Droid said, silence has gotten us sh*t. Its time to try another way. Jess
Posts: 870 | From ct | Registered: Nov 2012
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Part of the problem is we all know there is a conspiracy by the CDC with Alan Steere and Barbara Johnson leading the charge.
They have worked with the IDSA who for some reason have taken the position it is better to under treat than over treat (maybe theywere scared by the malpractice crisis in the 1990's).
So we are portrayed as the crazy ones while this bacteria has proven to be drug resistant just like other spirochete bacteria.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Yea, change is coming soon. I stopped my daughter from playing at the school playground. The sad part is that she had to sit on the sidelines & I felt bad.
The other news is that a girl got a tick on her today, while the whole class was playing on the grass play field. The girl's parent's are not allowing her to go on the grass either now!!!!
Change is coming for sure. I have said this before & the truth is that unfortunately more people will need to get sick in order for this to happen. Once the key people become sick & then it hits people, it will take off. Sorta like AIDS did.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
It will take off - it's going that direction. I really suggest that everyone keep talking, sharing, writing, whatever you do, to speed up this process. People cannot learn about what's happening if we stay silent.
Tim, when denialists try to paint us as crazy, I switch to science and start discussing the biological realities of the spirochete and what it does. I think it is the most complicated bacteria on the planet. -?
Lymed, about kids playing outside - I've been wondering - if kids were slathered in tick repellent on clothing and skin, could they make it?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin-spot on! No one can be educated if sufferers of Lyme stay silent. Social media is a superb way for us to communicate our suffering and to educate people about the reality of the chronic nature of TBD.
And excellent point as well about switching to science to shut the denialists up. I had someone tell me that her dr told her lyme is ALWAYS curable after a few weeks of meds and that it "rarely progresses beyond joint issues and fatigue". I then explained to her about the complexity of spirochetal bacteria and also how Lyme is a cousin of syphilis and how it is indisputable that late stage syphilis destroys the nervous system, so how can Lyme not do the very same thing?
We need to stop being quiet. We do not need to be ashamed that we have this disease. Only silence is shame. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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posted
Thanks, Jess! Any of us who are capable of doing so can pick up the phone and call a place - a garden center, a summer camp, a horse camp, etc and let them know about ticks!
And how to protect, and where they can find more info about it. If we all do this, the public will get educated more quickly.
I am proud to report that I go to the Flower and Garden show here every spring, have chatted a bit with booths there, and now people are telling me they are telling others, including entire college programs in horticulture, etc!!
See what a difference we can make? Don't underestimate YOUR ability to make a difference.
Posts: 13116 | From San Francisco | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
so much deja vu here. i was the teacher who didnt want my students playing on the grass but would have lost my job if i refused. and i was wearing a big hat because i was on doxy at the time.
i was running the horse camp-insisted on kids wearing the right clothes and using spray...but my grandson did get an attached tick-the only one i knwe of i 6 yrs of camp-and when i took him to doc they said-no problem - ticks dont have lyme here...it is now known as one of the hot spots of lyme
more but cant type...im glad its changing...it is...so slow. and yes similar to aids
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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