I don't know too much about the politics of Lyme. I just find it so heartbreaking that this is going on. Before a week ago I never knew really anything about Lyme Disease.
How can people be so cruel? Just let people get the care they need! I wish everything didn't have to be about money.
It makes me so sad. I pray that some kind of cure will come along. I wonder if that will ever happen??? When I think about everything I get overwhelmed with fear. It just seems like all some kind of conspiracy.
I hate that people know so little about Lyme. I hate that people find out I was dx with it and say "oh well at least it will go away with antibiotics. You will be better." They know so little. I find it tiring to even explain it to anyone...
Posted by Lymetoo (Member # 743) on :
It is indeed VERY overwhelming!!!! I've been here for 7 yrs and not that much has changed. Posted by bsigel (Member # 11810) on :
It is sad that we live in one of the wealthiest countries in the world and people with lyme disease are still suffering and there is very little help for anyone living this screaming nightmare. Like my daughter's neuro opthalmologist said, if everyone in Hollywood had lyme disease there would be a cure.
Posted by Aniek (Member # 5374) on :
There has definitely been a change though. There has been an increase in news coverage, not just of Lyme, but of the treatment controversy.
I believe we are at a turning point. It might be a turning point that will take years to be fulfilled, but it is a turning point. And we have the many wonderful activists on this board who somehow find the time and the energy to make their voices heard.
Remember, things usually get worse before they get better. The ducks will be fighting really hard to keep the status quo. We just need to remember to stand up for ourselves, and to make sure those in need get help.
Posted by Vermont_Lymie (Member # 9780) on :
Yes, I think things will change, sooner than we think. But not soon enough.
Just look at the great folks working on lyme education; the lymenet community; and the fact that tick borne diseases are on the rise. You cannot suppress the reality of TBD's forever when it is affecting and will affect so many people.
I went to the Columbia Lyme Research Center opening. The determination, energy and integrity of all the folks from the lyme activist community -- Pat Smith and the Time for Lyme folks -- gave me great optimism about the outcome of this battle.
Posted by bettyg (Member # 6147) on :
Lauren, use these teaching tools for family/friends/co-workers, etc. who CAN'T get it!
in my newbie package I sent you were these 2 wonderful posts from:
1. LYMEDAD's letter to family/friends!
2. DAR'S TOY STORY about being a neglected toy since we have lyme disease.
3. MOST POWERFUL THING TO DATE is
YANKEE MAGAZINE's 32 pages online of the ENTIRE lyme story to date! DAYSTAR POSTED THIS.
do a search, found at top under NEW POSTS
type in YANKEE MAGAZINE MEDICAL TEXT ANY DATE
LEAVE MEMBERSHIP BLANK, hit send
read the posts you find; one will be the direct link to read this online! there is an option on the right to PRINT off! point this out to whoever you send this too ... 32 large print pages where you can read every word!
good luck!
yes, things are changing w/attorney general Blumenthal Conn. getting involved and filing an anti-trust suit.
the recent 2 lyme protests; during my 3 years here ... i hadn't seen that done before. Posted by CaliforniaLyme (Member # 7136) on :
I pray for Blumenthal-!!!!!!!!!!
Posted by Ellie K (Member # 12056) on :
As MLK said, "The arc of history bends toward justice."
But change sure can be slow...
Posted by Skyler (Member # 11549) on :
Both my mother and I have been talking about just this.
We both say it seems like we are in some sort of nightmare. It does not seem real that this could be the world we live in. You would never ever think in America that this would be going on. It seems implausable!
We just need to keep fighting for a change. Which seeems impossible being we are the ones that are sick... but we just need to keep fighting. We need to work on getting advocates for Lyme Disease.
Things will change... i just don't know when.
Posted by wilsongal22 (Member # 11210) on :
I agree with all of the above.
I often wonder about this myself. Sometimes I get so overwhelmed thinking about everything. It makes me sick.
If you know anything about the mower accident I had right before this happened I was thinking about A LOT of stuff. My mind was full at the time and the message not to stick my foot under the mower couldn't get through all of it.
I often think a lot about life and the world we live in. Why it is the way it is. How it will change in the future. Everything I don't understand and everything that we can't give a simple explanation for.
So, I am right in there with it. I get overloaded trying to think about so much all the time. I get worried and depressed about it. Yet, even though I know I can't figure it out, I still think about it constantly.
So, I hope things change. I hope things get better.
Posted by Geneal (Member # 10375) on :
How many years was AID's around before adequate funding was designated to it?
I know it is not an exact comparison, but it was only when AID's starting
Affecting the famous as well as heterosexuals did it get the "front page" so to speak.
Change is usually slow and painful.
We are basically fighting an institution (IDSA) and ignorance.
I continue to try to affect at least one person whenever I can by explaining Lyme
Symptoms, causes and treatment. It starts as a grass roots movement.
It grows and spreads (like Lyme) until a general populace is aware and/or infected.
I hope and pray that the day is coming where all of us can get properly diagnosed and treated.
Hugs,
Geneal
Posted by randibear (Member # 11290) on :
i am sorry to say that i am a "negative nelly" on this one.
i think many of us will be gone (whether because of lyme or other reasons, hopefully, living to old age), before things really change.
i'm 56 and don't think i will see any significant changes in my lifetime....just too many mindsets and unwillingness to admit it...
Posted by Just Julie (Member # 1119) on :
I've been here for awhile too, 7 years now. I believe since I have the gift of enough time to look back at the journey, I can say for certain, DEFINITELY, that having this, this thing, Lyme disase has slowed me down. Not physically (well, probably there too) but emotionally, and mentally. Like, I can't just keep plowing ahead with my own agenda, because either my brain can't keep up, or I just don't have the drive to keep plowing thru.
I'm most especially thankful that having this disease process has made me GRATEFUL. Thankful that I do know now not to go roaring thru the tall grass and underbrush of the lush open spaces where I live, and maybe keep getting bitten, over and over and over.
That I don't drag my sons out to the open spaces to hike, and camp anymore, to get bitten over and over and over.
Just to have had my eyes opened, to be aware of how I could be much sicker than I already am, or maybe not in the state of remission that I currently am, has made me thankful.
To have met so many people here on this board, most not in person, but who have still made such a difference to me, my mindset from day to day, has been unmeasurable in it's gift.
So, while I guess I could have come down with something else, say MS, or Fibro, or ALS, I believe I am grateful that I had a measure of hope in the abx combos that I took, that I could get both my son's in treatment the way that it ended up being, that my oldest son did not have a brain tumor (daily headaches shortly before he was diagnosed) and my youngest did not have bone cancer (was unable to walk with his knee so painful).
Those were what I was looking at BEFORE I got the lyme diagnosis's for us all. MS, brain tumor, bone cancer. Hmmmm. I'll take Lyme, I guess.
For what it's worth, in the long range time frame I've had to look at all the events unfolding in the Lyme world, I don't think I'll see much of a "cure" in my lifetime. I'm 44 yrs old, btw. I have serious doubts about whether either of my sons's will either, they're 17 and 14.
I can't put a name on this one, but back in 1985 when I graduated from nursing school, and AIDS was just starting to be the grave sentinel of death, I read a research paper from Europe that my SIL (older wiser nurse at the time) gave to me. This was before the internet, I don't know where she came upon this paper, but it detailed out how there would never be an AIDS vaccine, and that this most likely would be a death sentence for the time to come. I totally believe what I was reading about AIDS at the time, it was very plausibly written.
I have the same sense about Lyme, that I had about AIDS back then. It's eerie, but I have to believe what I sense.
Well, a lovely bowl of organic chocolate pudding is calling my name in the fridge---made by Gregoire (yes, same Gregoire in Berkeley's gourmet ghetto--hi Ellie! I thought of you today!)
Over and out loved ones, Julie
Posted by tailz (Member # 10014) on :
I think it's going to change, but I don't think they are going about treating Lyme the right way.
I mean, right now, long term antibiotics are the only available solution, but I don't think we are ever going to cure anything with a bunch of pills - ever - though that's what we need to fight for now.
And I think it's going to take something drastic here for the medical community to shift their thinking - and their politics - because the cures are out there, if only we'd all look.
You go to the store and pick up a product - any product - be it food, or cosmetics, or shampoo - or even toilet paper or the drugs we all take for Lyme - and what do we find? - toxic chemicals. They're in our air, food, water. They're in our homes and schools, and we can't seem to avoid them because we all love convenience.
And when we think we've finally reached a plateau, we add cell phones and wireless to the mix of all things - microwaves - radiation.
I don't have a lot of support on this theory, but if you read 'Cross Currents', you'll see exactly why we all are sick with Lyme. These frequencies are harming us, and we've essentially become experimental rats for technology that was never truly proven safe.
So I worry that it will quite literally take a plague of some sort to totally wake this world up, while scientists wait for that final vote of 'proof' that this new technology is detrimental, which only a brave few are even attempting to look into.
Here's the 'science' for them: For every action there is a reaction. And you simply can't keep pumping all of these toxins and all of these frequencies into the environment indefinitely without consequence. Bottom line.
So I have to wonder what all these manmade chemicals and frequencies are doing to the rest of the solar system. It's scary alright - something scarier than even Lyme.
Posted by CaliforniaLyme (Member # 7136) on :
YES I think things will change!!!!
Maybe not in our lifetime but I hope so!!!! Maybe not though!!!
But I think we have the best group of doctors in the world working with us and for us- and I believe in them- and in us, too!!! I know many pepole like me who have devoted years of their lives non-stop to this- and with each new infection there will be more of us- and more- and sooner or later there will be a tipping point!!!!!!!!!!!!!!!!!!
![[rant]](graemlins/rant.gif)
![[shake]](graemlins/shake.gif)
![[Wink]](wink.gif)