Topic: How can one survive in the face of the IDSA guidelines being upheld.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I don't know how to live if the IDSA guidelines are upheld. The frustration, the negligence by our society, the ongoing inablity to be treated properly by the medical community....
How does one go on....how do I keep my chest from exploding....
If only I were healthy, and could afford it, my life's work would be to get recognition for this disease.
It is what I want to do for the rest of my life. My children are nearly raised now.
How can I do this? I have ideas, but they take MONEY. They take TIME.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It isn't much longer to wait. I know it is hard to do too.... really hard. I submitted a number of papers and I am hoping they come to a decision soon!
BTW-
I have yet to find anyone anywhere who thinks they will be changed. Except me! Really! No one I have spoken to. But I have faith!
I believe they can not let them stand as is. SOMETHING must be changed in light of all the evidence, even if it is just minor wording. But not to worry either way....
Because just like we've done with the health departments who have blocked our paths for so long and caused so much destruction.... we've learned to pretend they are a pile of doggy do-do on the floor and we just walk around them.
And we will continue to do that with the IDSA guidelines... so hang in there.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thank you for your response Tincup. So.....when you say you know of no one who thinks the guidelines will be changed, are you speaking of professionals on the panel? Or just fellow activists?
If it were just me that were sick, that is one thing, but with three daughters with chronic lyme disease.....and I would like some healthy grandbabies....even just live ones (one of my babies was still born).....
I don't know... the frustration feels too much to bear.
A few weeks ago I got a news lyme email that the european guidelines for lyme disease are explicit that there is no such thing as lyme disease.
A lady at my Swiss school let her daughter go on a field trip in the summer that took her daughter into the woods....and yes, she got lyme disease...it was undertreated....and now she is many months into the infection.
The Swiss medical establishment tells her there is no such thing as chronic lyme disease. I sent this lady to a clinic in Germany that will treat chronic lyme...and the Swiss doctor called the mom to tell her that if she loved her daughter, she would not take her to the quacks in Germany!
I feel like my chest will explode just talking about it.
It seems too much to bear sometimes. And as many times as I have explained to my parents that I have to return to the U.S. for medical treatment, they ask me again and again why that is...
Swiss people think I am crazy when they have good doctors here....Swiss insurance won't pay for going out of the country for treatment...that is why we have to remain on global insurance, not local, and can never become "local" in switzerland. We will have to return to the U.S. when our "assignment" is over.
It goes on and on...but then I'm preaching to the choir. The world is upside down....crazy....cats and dogs living together....
Oops.. that was a line from "Ghostbusters"...have to keep some humor going....
<Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well darn it all wreck... you've managed to put tears in my eyes now! Oh my. I ache inside for what you are having to deal with now.
I know it isn't comforting to hear but we are going as hard and fast as we are humanly able to try to break down the IDiots wall so more won't suffer and so we can proceed to finding a cure.
You said.. "So.....when you say you know of no one who thinks the guidelines will be changed, are you speaking of professionals on the panel? Or just fellow activists?"
Sorry I didn't make that clear. As far as the professionals on the panel- I have NO contact with any of them. I will not even think of "bugging" any of them, even ones I know, while this process is ongoing. So it is NOT their opinions.
My comment about not knowing anyone, was in reference to patients, activists and others involved. Actually yesterday someone on LN did agree with me.. so that makes two people (she and me)... that think the Guidelines will be changed somewhat.
And don't think it is only there that folks think you are crazy. HA! It is so common these days that if a patient doesn't say they were told they were crazy, I'd have my doubts they even had Lyme!
Pray wreck, if you pray. Also join in each and every time the organizations here ask for help. We need to help them pave the way. The more supporters the better.
And educate those who WANT to be educated. I know you do, but that is a must.
When I got sick, NO ONE for years knew anything about Lyme. You couldn't buy an article about it if you had to. Now look at the state of it. We ARE making progress. But when loved ones are involved it will never seem or be fast enough... will it?
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
We need a new John Steinbech to write "The lyme of wrath". Too many stories trying ford the darkness for light. Hope you find the solutions you need Mary.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Thanks you guys. Daughters with lyme disease.....heartbreaking. My husband has it too, but he doesn't need to bear children in the future now, does he. :-)
My oldest seems to suffer the most. By the way, she is just startig college...full scholarship, and she is pre-med. She is now working on research funded by the Michael J. Fox foundation on Parkinsons. (We all know he has lyme disease!!!)
She was the only freshman picked to work in this lab. I'm so proud of her!!!
But she suffers.....
You guys don't know how much your support means to me...just to open this email and see you have responded
Thanks, and happy holidays. Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
Hi Wreck, Your story is sad and similar to mine. My sons are dealing with Lyme and I have been doing everything I can to raise awareness and to make sure my sons dont suffer as I did for so long. Not everything takes money. Lime/Lyme green ribbons outside have brought so much attention to my area many have joined in. "Ribbons Across America" is really making us visible. I also started a support group in my area when others called me following an article of my story. Together we host a monthly support group at our local library and have met so many wonderful people fighting as we are. We never know who will be well enough to host but we have managed so far and we've made our little group known across MA and by larger Lyme organizations. my phone rings with people asking for help. One step at a time. One day at a time. Being able to answer questions to those in need is fulfilling and doesn't cost anything. Writting letters when the Lyme disease association emails "Call to action" is helping too. Letter writting or support group host is my way to make a difference and I will continue to fight for our children. You can too and it doesn't have to cost money. Every letter counts. Blessings,
Trish S-L-A-M.org
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I Trish. I have been writing letters when able since 2004. It has been a tough, long, draining journey, as you all know very well.
I always respond to the "call to action" that arrives in my mail box. I have even had two little fights with my parents because they say they "pray" for me, which is great!!!
But, I say to them....have you DONE anything!!!! Have you written a letter....
I have written senators....oprah, obama, news channels, newspapers, neighbors and friends, doctors......
My area does have a support group....but they speak Swiss-German. That leaves me out. I should try to go to one... one of these days, and see what it is like there.
Very few people here know about the politics of lyme disease. I'm the crazy lady who says all her kids have lyme disease.
I've been around this stuff for a long time...met many of the players, seen many of the doctors.... taken all the medications......
I've distributed the green magnetic ribbons for the back of the car....given out pamphlets to the schools on lyme disease....
Held my suffering children for 7 years now........
I find that just not thinking about it sometimes is the only way to move forward and feel joy. sometimes I can trick myself into thinking my family is just like everyone else's...
But we are not.
People talk truth in science, evidence based guidelines....trusting the government and our news agencies......
I am one disallusioned human being.
I know I sound down, but today I had my book club ladies over for our Christmas meeting..
Tomorrow I host another book club I belong to for their Christmas party....
I fly to the U.S. in a week for the holidays and will see my oldest daugther who started college this fall.
Many happy moments this week and next. That is what I will focus on.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
You are not disallusioned and I too am the "lyme lady in town." With so many now sick schools finally want to hear from me and we are making a difference. Safe trip and I'll pray you are well to enjoy the holiday!
blessings,
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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