Topic: Maryland Lyme patients with questions- please read
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Maryland patients- got a question?
Medical, insurance, where to buy a supplement? Any questions about your kids? Can't get meds?
After you type it up here... please feel free to copy and paste it on an email and send it to your legislators and ask THEM to answer your questions for you. Nicely please.
The DHMH just told me they will not do anything to help the Lyme situation in Maryland... even after hearing the news from the AG report... and all the facts and figures on this exploding epidemic.
Even their Maryland Get Ticked Of Program is a sham as they told me they have no money to give out brochures or the magnets they advertised (even though they can get cases of free literature, etc from the CDC).
But yet they put out a press release saying they are doing it... knowing there is no money and they aren't going to do it? HELLO?
They can't seem to be able to take Lyme prevention info to county fairs and booths where they are already setting up at... because they are too "poor" to do so.
They claim they have NO money .
This is in spite of the fact they get billions of dollars each year in their budget from taxpayers money. More than any other agency in the state... and guess how much goes to Hopkins?
They said if we want help to go to the legislators and tell them our problems.
Soooooooooooo... let's go!
I figure if we tell them to stop funding Hopkins research cause they are IDSA and the IDSA has been busted... we can use the money they get!
Here is a site to find your representatives... with emails listed.
posted
Hey there TC. My lymie daughter, hubby and lymie son are all moving to Calvert County MD in July. She is under the impression that "at least there are LLMD's in MD". Is that the case?
I went to the LymeMD page and was immediately turned off by the statements I read there.
Any good guys in MD/DC? I'm sure she will be posting here herself in the seeking a Dr. section soon, although her Dr. here has agreed to treat her long-distance as long as she sees him twice a year. She has been making good progress and I would hate to see her relapse big time.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Gramma -- Yes, we have very good LLMDs in Maryland. If you need names, send me a PM. Your family will be in good hands in Maryland.
TC -- Well, well, well. An outright suggestion to contact our legislators and tell them our problems. I welcome the opportunity and will specifically tell my legislators that the DHMH sent me.
Anyone up for a letter writing party?
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Question for Maryland residents....I was at a Montgomery County government meeting today and someone mentioned all the "lyme activists" pushing education about prevention in Montgomery County. (It was not a negative comment.) Anyone know anything about this? Is there possibly an organized "lyme movement" in Maryland (or Montgomery County) that I am not aware of? I didn't have a chance to speak with the woman from the county government who said that.
Tincup.....do we need to all take a trip to Annapolis when the assembly is back in session and meet with our reps in person to lobby for money? I am willing to organize if people will agree to show up. I do know that the budget is in absolute shambles and ALL are getting cuts. I'm not excusing it....just know that budget numbers don't add up right now.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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NatCapLyme and some activists in the county were instrumental in getting County Exec Leggett to implement an education campaign back in April. Apparently, it was the culmination of years of work.
Signs will be posted in parks and trails, info is posted on the county's website. Brochures are also supposed to be made available, altho I haven't seen any.
It's a first step in the right direction.
Posts: 52 | From silver spring, MD | Registered: Jan 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey gramma...
Calvert County? GREAT! I like it there. That's where I would hunt down the sharks teeth years ago. Lots of fun! And many Native American camps there too... use to be... mostly along the rivers.
Lou would be a BIG help in locating a local doc for your dear ones. Glad she saw the post. But I would also encourage your daughter, et al to keep in touch with the LLMD she has too.... at least till she is happy and settled.
As for the LymeMD site... yeah, I know. I have known folks who are very happy there... and the doc seems to be good and a decent fellow... (OUCH did I say thattttttt???) even though his name is affiliated with the "dark side".
I've actually grilled patients to find one that was unhappy so I could boot him from here to Mars along with the rest.... but his patients all seem to be pleased.
I also mentioned to that doc that wording on the site had to go. It sucks. But to survive in a ducks world... sometimes you have to grow web feet and quack a little.
Or else you would be the UGLY SWAN!!!
Hope to get a chance to meet your family one day. That would be nice.
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Lou,
Ya got me laughing! Can't sneak one by you... that's for sure!
You said.. "TC -- Well, well, well. An outright suggestion to contact our legislators and tell them our problems."
I tried it last night. Wrote up about 8 emails. Marked the title as Immediate Attention Requested Please... for a patient in that district who was not doing well.
Know how many responses I got today?
NONE!
I also have bad news from our officials in Maryland today. Know how many are going to help us with the Lyme situation?
Yep... NONE!
I've turned the state inside out and NO help to be found. I don't think they HEAR us.
But.. for the effort I did learn a lot of new things... so hope to put something together soon and be able to break through that wall and get folks help.
In the meantime though.. the letter writing campaign would be great. I figure if they can't help me help others... then THEY can help them.
But they REALLY need to be kicked at this point.
I do have some notes I don't want to post.. but once I get straight... will let you know. OK?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
DJ...
You said..
" I didn't have a chance to speak with the woman from the county government who said that."
Glad Nika mentioned the DC group. Good for her.
Also... I was on the phone one evening for a LONG time speaking with a county employee there.. very nice lady. She had some folks close to her who were sick. We talked about everything in the world that day it seems.. but she did tell me she was going to help get the word out there... the "right" word.
She was in a position to do it too. Don't know if it is the same one.. but my bet is yes.
Good to know someone is actively working to get help for the county (DC group)- good for them!
DJ said..
"Tincup.....do we need to all take a trip to Annapolis when the assembly is back in session and meet with our reps in person to lobby for money?"
Truth is... I don't think we need their money... mostly because whatever money they would give... if we could squeeze their turnip.... would be controlled or governed by the DHMH. That's like giving the IDSA our taxpayers money and saying, "have at it. See how much more damage you can do!"
We NEED to be heard on the issues of corruption within the tick-head trio (DHMH, Hopkins, IDSA).
We NEED to kick the state for advertising they are actively working on prevention efforts... when in fact they told me there is NO budget for it at all ... and no plans to carry through with their Maryland Get Ticked Off Campaign.
I guess they thought if they wrote a press release and said they were doing something (KNOWING they weren't going to).. it would make them look good.
And keep in mind.. it only took THREE years for them to write that press release.. that isn't worth the paper it is written on.
Yes.. I am mildly furious. I REALLY don't like being lied to on top of everything else.
You said... bless your little pea-pickin' heart... "I am willing to organize if people will agree to show up."
Hot diggity dawgs we got us a keeper!
That is pure music to my ears. I am sooooooooooo tired and worn down. I REALLY need help. There are so many things we could do that would help... but we need man-power and someone to do them.
We've been promised funding for 2 projects that need attention immediately.. and I can't even get to them! BIG deals too!
I want to get those who can help a bit... even stuffing envelopes or making a few calls or research... and get them together to make some plans and share the load.
Is it possible you could make a post or send out emails asking for some help? I don't have the organizational skills to handle emails or the ability/energy to take that on.
We could call it the Task Force or something nice?
Please let me know... and thanks for the suggestion. Oh... and about the rally, etc.... that might be something we can do... but before we ask for help... we want to be sure what we are asking for... and be sure it won't backfire.
You said.. "I do know that the budget is in absolute shambles and ALL are getting cuts."
Yes.. the Governor made that very clear too. But then we don't really want money... probably one of the few groups who don't. But we DO need help.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Nika! Is that you?
I can't believe I didn't make that connection before. HA! I am a dope... no doubt.
Yes.. the DC group has done some good things. They also jump in when we need help in the legislative arena. Good to hear they have gotten Montgomery County to do something! And I know... it takes FOREVER to make anyone move! Glad they stuck with it.
Good job and thanks for letting me know!
I also have new info that MAY help some other counties do the same thing... and it won't cost us either. One of the many things needing to be done that I can't get to right now.
Is there anyway you can get a few folks to pitch in from the other group?
Maybe you and DJ could try to get some folks?
Then we can do a conference call and make some plans.
It is nice to FINALLY be able to make plans rather than spend all our time running around putting out fires.
Encouraging! But we do need help before we can do anything.
I'm the daughter... can you send me a PM with your suggestions? I would be greatly appreciative!
-------------------- I can do all things through Christ who strengthens me.+++ Diagnosed with Lyme in 2005. Suffered for years before that. Still treating/fighting it. Son diagnosed with Lyme and Babesia in 2007. Son diagnosed with Asperger's in 2011. Posts: 40 | From Maryland | Registered: Jun 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Jbio --
I sent you a PM
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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