posted
i dont know but we could do with one.....i am sure there would be a lot of people turn up.....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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bcb1200
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posted
i'd go. Someone should organize for May.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Tricky Tickey
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posted
I could commit to go if it was organized. I want to do it!!!
-------------------- 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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posted
Most people are too sick and financially challenged to do this. It gets proposed every now and then but not done.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Did you hear about the protest last week in Washington DC with 45,000 people?
Neither did anyone else.
Lou is right. We need to do what we can, when we can, with the resources we have.
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
What protest in Washington?
So who's gonna take the reins here? Anyone wanna step up to the plate? I'm well now...almost to the finish line. Why not come up with a date for Washington...get a game plan. My Idea:
1.Decide what entity we wanna march on. (The White house, the Capitol, or how bout the IDSA?)I'm iliterate when it comes to political things knowing who does what.
2. What's the strategy? Bold signs about the IDSA inaction? Faulty tsting? Concealed information? We need to get crazy & blatant...call the IDSA liars if we have to.
3. Do we have a rally at the Lincoln monument? Do we need permission to do so? I have no clue.
4.Decide on an appropriate date. Who knows what's going on in Washington. Anyone have ties to the media, Hollywood connections? Producers?
5. Lodging...I can suggest a way to save a bundle on hotels. Book/bid em thru Priceline! I stayed in a 4 star hotel In DC for like $69.00 in 2001. Book air flights early..you save bucks. Or drive in vans.
Well, do I have an activist spirit, or what? I can't work alone, we need a supervisor, we need a leader here. I'm a motivator, not a leader. I follow somebody elses lead much better.
So who's serious?
-------------------- 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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onbam
Unregistered
posted
I'd sure as **** go.
Well...I'm sure you can infer from my signature what I think the strategy should be. The IDSA guys are just frontmen...it'd have to be a government institution.
posted
ooooOOOOOOoooooOOOOOOoooOOOOOooo... that would be fun!!
...someone may need to walk with a cut-out poster of me though... stuck on an island right now.
but yes! sounds like a good time
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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bcb1200
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posted
I would totally help on this if someone takes the lead. I realize the sickest people couldn't go, but I bet most lymies would along with their close friends / family.
I would do it at the capital or lincoln memorial
How do we get the LDA, ILADS, Turn the Corner, or CALDA to get this moving?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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If that protest, and others like it, don't make the news, then maybe this effort could be structured differently?
Like maybe use the green color effectively - drape the city in green. Have people wondering why there's green ribbons springing up everywhere. As long as it's legal to do.
Like plan it in tandem with meeting with Congress also, planning a Congressional event for May Lyme Disease Awareness month.
Like planning other events for May Lyme Disease Awareness month, collectively, in DC.
What about planning for a practical action, like handing out info on how to protect us and pets?
Note: at the recent San Francisco Lymewalk, we passed out 800 awareness slips to the public as we went down our main thoroughfare.
Like having a listing of what all is going on nationally for May Lyme Disease Awareness month.
How about a central place where we feed in where our articles are going, what events are happening, where the month is being declared governmentally, everywhere in the country, and make that part of the DC publicity, maybe for all the states.
I know the AIDS movement spilled their blood on the steps of the Capitol to get attention going. Can we do something too? Would have to be thought out.
How about some clever street action? Like people dressed as giant ticks? That would get attention.
Arkie is right - we need to have a coherent message about what we're asking for.
That Lyme and co's are spreading everywhere. That people and animals need tick repellent protection. That the tick problem needs to be addressed.
That research money is needed.
That these illnesses present in so many different ways that they're often not recognized initially.
That doctors need to be allowed to know about, recognize, test for and adequately treat.
That many people need an opportunity to get funding to go to the doctor and get treatment.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
first of all i wasnt a protest so to speak, it was a rally to take back sanity in this country, and there were about 250,000 people there, i was one of them.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Let's start planning....Heeeelp!!!!
-------------------- 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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bcb1200
Frequent Contributor (1K+ posts)
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posted
We could get famous people with lyme to speak. Daryl Hall, Dr. B, Pam Weintraub, etc, etc,
Who knows how to set this up?
May 2011!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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onbam
Unregistered
posted
"Rally to restore sanity." Unfortunately, what we have to say is not what they're calling "sanity."
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posted
I would looovvveee to do this! There are so many students here at my college who have Lyme Too! i would love to inform congress or the IDSA what I think about this whole thing and how it effected my education!
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
Maybe there could be multiple contingents, like young kids, students, families, the pets contingent, occupations, etc - just to show how many are being affected.
People could hold up signs about which state they are from.
People could hold up signs of our various Lyme orgs.
How about people walking with names/pictures/whatever of those who aren't there who have Lyme/co's?
And those who don't have it but are in support of those they know who do. They will have more energy to do things.
Then people should be giving out info along the way.
One parade idea: have people carry a large green cloth that people throw money into for fundraising.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
erick- I saw some pics from that rally. Looked like fun! Kinda like a mild Jimmy Buffet concert... ha! Glad you went!
In my comment above I was talking about a number of rallies, protests, etc. that go on regularly in DC. Most don't make the news and most do not make positive changes.
They are so common that it is here today, gone tomorrow.
Fun? Sure... but unless there are a million people (and even then it doesn't always affect change).... there would be a lot of time, energy and money... and work involved... and what would it accomplish?
Example- Take 2,000 average Lyme patients.
How many are well enough to make the trip?
How many have the money needed?
How many could afford to take off work to go?
How many won't have child care to consider that would hold them back?
How many can afford to use what little energy they have to make a trip there that may not be productive?
BUT... the most important thought...
What are you protesting in DC and what do you hope to accomplish by going to DC?
MOST of Congress is already listening. We have over 100 cosponsors on the federal bill (a large number compared to most bills). We also have the support of many more.
It is Pallone that has single handedly held up the federal bill as head of the committee, which no one has been able do anything about at this time.
The IDSA has him by the ... uh... ears.
Things hopefully will change since this last election and we are looking at it, so stay tuned.
And consider this...
If our most precious resource- Dr. J in CT- doesn't get more than a couple hundred people there to rally/protest for the kids (our precious kids) and his cause.... bless his heart...
And the actions don't change policy to the better for him or others...
Do we want to spend a lot of time, energy and money on a rally/protest that is not even focused?
Someone said.. "How do we get the LDA, ILADS, Turn the Corner, or CALDA to get this moving?"
I can not speak for them.. but from what I know...
First of all, they are 501 C3 organizations and certain types of political things are not allowed.
Second, they have very specific missions.... and funding protests are not written into them.
Lyme Rights is not a 501 C3 and they organize most of the rallies and protests... and do a wonderful job I might add.
BUT.. they must have a purpose and specific goal, people to help, energy and money (or try to) before they take on a project.
They also know the facts I mentioned above .. and know we need to focus our efforts where we can accomplish things.
MOST rallies and protests don't involve a team of all sick patients.... hence a much better attendance.
Hope that explains it.
But keep that spirit going. My thought is there will be some protests coming up... things were on hold waiting for the outcome of the elections.
posted
Thx for responding - yours is the voice of experience.
Maybe the kind of energy we're seeing here could be channeled into doing May Lyme Disease awareness actions wherever we are.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I've been down to the March for Life in DC. Granted, this may not be as large as that, but I believe that it would make some kind of difference. I would definitely go. ROAD TRIP!!! XD
-------------------- *~*Rerae*~* Bitten 3/98, Diagnosed 9/04 Treated 3 weeks, then pushed aside. Need good doc to pick back up. Posts: 25 | From Erie, PA | Registered: Oct 2010
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onbam
Unregistered
posted
TC--How's Dr. J doing, btw? Feel free to send me an e-mail.
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posted
late to the discussion here ... but many years ago, sometime back in the 90's, a group of people with lyme tried to organize a rally/lobby thing in DC for funding for lyme research- which they did- but it was tiny- and about maybe 20 of us showed up- (even that number might be pushing it ...) and some senator, whatever, spoke in support of it -- all of maybe 5 minutes! that was it, that was all- and the show was over- it happened so fast that the fat lady didn't even have time to sing!!!
but what did happen was a seed was planted ... because SO much has happened since ...
anyone attend? it was like in 97 or 98- in the spring- i think the cherry blossoms were in bloom ...
Posts: 94 | From shaker heights, ohio | Registered: May 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Robin 123: OMG!!! I love your idea of dressing up like giant ticks! Wow! I was planning on doing a tick float for the 4 states parade next year.
Well, I hate to have a damper put on such zeal here. I still say it's worth chasing; on our own.
-------------------- 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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Tricky Tickey
Frequent Contributor (1K+ posts)
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posted
Robin123: I love ALL your suggestions. WE are on the same page here. Exactly what I was thinking.
-------------------- 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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posted
Actually, I already did testify as a tick at City Hall the first year, before I knew any better!
It was after we found our first SF person infected here, which kinda had me freaked out, so I realized Halloween was on a Tuesday, which is the board of supes day, so...
I stuffed a pillow case and tied four dark bags around it, each with their two ties, to make eight little legs,
then forgot I had to get it through the metal detectors at City Hall. They wanted to open it up and I said I needed it as was for a presentation,
so they told me they were going to have to put it through the x-ray machine, and I said fine, I don't think you'll find any spirochetes inside
which I don't think they understood, but Tick passed the x-ray test and went on upstairs with me,
where he testified in his two minutes of public comment time: "And I bit someone here!"
The board president thanked Tick for his PSA.
Gotta tell ya, I felt empowered testifying as a tick. They have all the power! See the fun you could have?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Arkie, to enlarge on the idea: get folks to dress up as giant ticks chasing animals, with giant spray bottles chasing the ticks and animals -
maybe it doesn't always have to be a protest - we could do some street theatre - think teaching, awareness action -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I am SO on board with this. I don't have the skills necessary to organize it but I can help to advertise it and show up with a large contingent in tow. Love the tick costume idea. I think there are a lot of people who'd be enthusiastic about this.
-------------------- Currently infected with Lyme, Babesia, Ehrlichiosis, Rocky Mountain Spotted Fever, Mycoplasma, & Q-fever.
10 months into treatment, currently on Bicillin, Rocephin, Doxy, Biaxin, and Mepron. Posts: 87 | From USA | Registered: Sep 2010
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posted
Ok, so if protests don't get noticed, then perhaps this event could be designed differently? Like with some theater and humor, with giant ticks, etc? Everyone has to wear a relevant costume get-up?
Purpose being awareness/education/advocacy -
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Done carefully and age appropriate, it could be a good learning tool for children in summer camp or school.
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I too like the idea of tick costumes. If your town has local parades, it would be great to decorate a giant tick float.
Robin's idea of doing street drama is excellent. I suppose May is the best time to do it. Should we start a new thread? Under activism?
-------------------- 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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posted
Ok - 7 long pipecleaners - 6 of them dark, one some other color.
Connect the ends of two dark ones to make them double-long, then complete the loop with the other color to make a circle.
Take the other four and twist their middle sections around the two long dark circled ones to make four sets of legs.
Put around head, look in mirror at your homemade tick headdress and try to keep a straight face.
When you can manage that, then go do an errand and forget that you're still wearing it. Posts: 13116 | From San Francisco | Registered: May 2006
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Post a picture of the tick costume and the tick headdress. I wanna see this.
-------------------- 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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