Topic: The tick has hit the fan- IDSA guidelines deny treatment
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
When you get time..
Call the Infectious Disease Society of America and thank them for ruining your life.. and for destroying the lives of many more to come.
While you have the phone close by... you might want to thank the insurance industry for being right on top of the IDSA guidelines (in their pocket).. chomping at the bit.
Point being... have you ever seen an insurance company move fast to HELP you?
In less than a week after IDSA guidelines hit the internet they have already started refusing patients their medications for Lyme disease... while quoting IDSA guidelines!!!
I just recieved this on an email. ````````````````````````````````````````````````
This disturbing letter was received by a patient denying her medical treatment:
My doctor has been trying to get them to allow me to use Ketek and or Biaxin. This is what they said to me:
..[my insurance company] has recieved a request to preauthroize Ketek 2 daily. This request is not approved for reimbursement based on [my insurance company]'s limitations and exclusions for coverage outlined in the prescripton drug benefits section/rider of your member contract.
This specific benefit exclusion is: This medication is not FDA approved for this condition and this indication is not an accepted use per Stand Reference Compendia.
Additionally, the Infectious Diease Society 2006 Treatment Guidelines for Lyme Disease specificaly state the following:
Because of lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme Disease: first-generation cephalosporins, fluoroquiniolones, carbapenems, vancomycin, metronidazle, tinidazole, amantadine, ketolides, isoniazin, trimethprim-sulfamethozazle, flucanazole, benzaathing penicillin G, combinations of antimicroials, pulsed-dosing (i.e.,d some days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozon, fever therapy, intravenous immunogloblin, cholestyramine, intravanseous hydrogen peroxide, specific nutritional supplements, and others.."
Now Betty.. how do you like the edited title? I've never done that before.
posted
Edited: Tincup, this is too important a subject; would you change your topic line accordingly to something else; example:
06 IDSA guidelines EXCLUDES chronic lyme treatment or something to this effect!
All the newbies who don't know you, will not begin to realize how CRITICAL THE CONTENTS OF THIS POST ARE. Thanks for your consideration Tincup!!! BG
Tincup and Mike, I broke this up for myself when I received in my private email from each of you! Talk about DISGUSTING!
Each treatment we are ON, is covered in their DENIAL LETTER!!!! They didn't leave anything out !
I encouraged all on my lyme list group to CALL SENATORS/REPS/ WRITE THEM/ about this mess; IT'S AN ELECTION YEAR....BE IN THEIR FACE ! ***********************************
My doctor has been trying to get them to allow me to use Ketek and or Biaxin. This is what they said to me:
..[my insurance company] has received a request to preauthroize Ketek 2 daily.
This request is NOT approved for reimbursement based on [my insurance company]'s limitations and exclusions for coverage outlined in the prescripton drug benefits section/rider of your member contract.
This specific benefit exclusion is: This medication is NOT FDA approved for this condition and this indication is NOT an accepted use per Stand Reference Compendia.
Additionally, the Infectious Disease Society 2006 Treatment Guidelines for Lyme Disease
specifically state the following:
of lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential harm to the patient,
the following are not recommended for treatment of patients with any manifestation of Lyme Disease: first-generation cephalosporins, fluoroquiniolones, carbapenems, vancomycin, metronidazle, tinidazole, amantadine, ketolides, isoniazin, trimethprim-sulfamethozazle, flucanazole, benzaathing penicillin G, combinations of antimicroials, pulsed-dosing (i.e.,d some days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozon, fever therapy, intravenous immunogloblin, cholestyramine, intravanseous hydrogen peroxide, specific nutritional supplements, and others.."
Don't forget, do a tick check! bETTYG
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
IDSA:INS Cos
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Time to get the lyme green buses gassed up and ready to march on Washington...
before we run out of abx....and get really crazy on their collective a$$e$.......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Is there any reason why this ins co cannot be identified? I think everytime someone gets this reply from an ins co, their name should be publicly posted (the company, not the patient).
Posts: 8430 | From Not available | Registered: Oct 2000
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
What a bunch of crap!!! Did they list an alternative to all the treatments that they slammed?
Oh, let me guess, lose weight like what they say at the Mayo!
This just ****es me off.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
lou..
To respond to your question... The insurance company name was removed when I got that notice.
If the patient wants to post it... they can. And yes.... I agree with you.. the insurance companies should be made to squirm with all the negative publicity we can give them.
`````````````````````````````````````````````
I just got an email about someone breaking down the IDSA guidelines into plain languge so folks can figure out what they are talking about... and how it will effect all of us.
It was a 2 word reply... in what they said was "plain English"... and read...
posted
This really is ridiculous- It is obvious that the people writing these statements have never had someone they love sick with lyme nor had it themselves
How can they be so blind?
Thanks for bringing this to our attention
Sarah
Posts: 119 | From new york, NY, USA | Registered: Apr 2005
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posted
Just had this crazy idea and by-golly I think it would work!
I wonder if we could personally challenge Steere et al to accept a pint or so transfusion of blood from those that have been CDC positive and then "cured" by using their guidelines.
Ya think they would go for that? As they say, the proof is in the pudding (or blood).
Hmmmm ... now how to word the invitations for all the onlookers that would like to serve witness to the sure to be historical transfusion ...
I'll work on that and get back to ya
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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bettyg
Unregistered
posted
Tincup, old girl; you did GOOD on editing/adding to your subject line! YOU GOT MY ATTENTION! 1st time doing this wasn't so bad; was it? lol
I'll send this link also to the person who shared this story with both of us about seeing about NAMING INSURANCE CO.!!
Ok, election day is 2 weeks from today.
How about calling your LOCAL reps/senators offices to find out when they are going to be NEAR YOUR AREA.
Make an appt. to visit with them about our lyme health insurance & DENIED REIMBURSEMENTS ... all out of pocket, etc.
If you can get the appt., how about seeing if someone extremely sick, on IV, in wheelchair could possibly come and tell THEIR story to our DC rep/senator ?
Also like the idea of humor interest story in newspaper, but most will NOT do it BEFORE ELECTIONS due to all the LETTERS TO EDITORS.
Time for us to take action NOW in whatever capacity we are capable/physically able to do!
I sent 2 emails to my senator tonight about other stuff.
But I'm GOING to write a new email for 2 senators and 1 house rep. about LYME, S1479, AND NEW IDIOT IDSA GUIDELINES. Bettyg
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posted
This makes me extremely angry and very, very scared -- for all of us.
WHY???????????? Why are they doing this??????
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
My Friends,
I do believe the time for action is at hand.
No more pleading with Oprah,Montel,Dr. Phil, Whoever...
We have GOT to make a Nonviolent but very Up front and personal physical protest.
The IDSA cannot be allowed to systematically doom us to slow,painful,insanity and death.
I know what I want to do...march,crawl,hop,limp or whatever on washington ....
Any other suggestions??? Better Ideas??
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Did others watch the benefit for autism research and education on Comedy Central the other night?
It was hosted by Jon Stewart and had lots of big names from Jerry Seinfeld to Peter Williams. And it was very funny.
Clearly someone who cares deeply about autism is very well connected in New York and Hollywood.
I imagine some of the Literatti for Lyme celebs like Amy Tan are also well-connected.
They may not be huge draws themselves (hey, I love Amy Tan, but she's not exactly a Jerry Seinfeld), but I'm sure they run in the same circles as many of these big stars.
How can the folks at the LDA who have been cultivating celebrities like Tan work with them to get big name, non-Lyme infected/affected celebrities to take up this cause, as has happened with HIV/AIDS, etc.
Who knows, maybe Amy Tan knows Bill or Melinda Gates. There must be someone at the LDA who knows her well enough to ask.
Here's my other thought: i would think the pharmaceutical companies that make the drugs on the IDSA hit list for Lyme disease treatment would object to the blackballing of their drugs for Lyme treatment.
We could start letter-writing campaigns to the presidents of the pharmaceutical companies that manufacture drugs that have helped us personally, asking that they oppose the IDSA guidelines and help "educate" Congress on the dangers of this type of restriction.
The pharmaceutical companies have huge clout on Capitol Hill and believe me, they use it.
In my opinion, they are more powerful than the health insurance and medical groups combined.
Posts: 164 | From USA | Registered: Jul 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Lesley, YOU have hit upon a great idea..
..... "Here's my other thought: i would think the pharmaceutical companies that make the drugs on the IDSA hit list for Lyme disease treatment would object to the blackballing of their drugs for Lyme treatment.
We could start letter-writing campaigns to the presidents of the pharmaceutical companies that manufacture drugs that have helped us personally, asking that they oppose the IDSA guidelines and help "educate" Congress on the dangers of this type of restriction.
The pharmaceutical companies have huge clout on Capitol Hill and believe me, they use it.
In my opinion, they are more powerful than the health insurance and medical groups combined."
I hope the LDA and ILADS are already working on this.
Also I do not know Amy's handle on here, but I have been told that she might be a member. Not sure if she is still around or not. She may be doing all that she can already.
Posts: 2360 | From SE PA | Registered: Mar 2004
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I'll be at both LDA (fri) and ILADS (sat/sun) conference in PA...I'm sure there will be much discussion of this and maybe we can drum up a plan.
I think we need to make the most of the new lyme film...people need to see this film to get the big picture...maybe we can get our local independent theatres to show the film while we hand out information... (people love movies...)
-------------------- We are spiritual beings on a human journey...
quote:Originally posted by humanbeing: Anyone going to the conferences this week?
I'll be at both LDA (fri) and ILADS (sat/sun) conference in PA...I'm sure there will be much discussion of this and maybe we can drum up a plan.
I think we need to make the most of the new lyme film...people need to see this film to get the big picture...maybe we can get our local independent theatres to show the film while we hand out information... (people love movies...)
How did you get the abiltity to attend the ILADS conference?
Posts: 559 | From Cary, NC | Registered: May 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
the film is not being released until at the earliest NEXT summer!
We need direct action in each of our towns. Am march would be gret but the numbers wont be high enough. We each need to get numbers in our closest cities and do something coordinated with other large cities.
I also like the idea of "letting" the pharma industry know that their meds have helped us....and the IDSA guidelines will not let us have these meds.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Rather than marches, how about some small "demonstrations" at polling places on Election Day.
Best choices might be the polling places of politicians with the power to move Lyme legislation forward or perhaps polling places near NIH or CDC.
The key would be to get press coverage. Someone would have to write a press release and get it to local media outlets.
Seems the press may be looking for Election Day "human interest" stories.
Or ... how about bigger demonstrations outside the headquarters of any insurance companies denying coverage for Lyme treatment prescribed by a doctor.
Posts: 164 | From USA | Registered: Jul 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Lesley, I think you've got some very good ideas!
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Pharma does not care whether the patient pays for the drugs or the insurance company. So, this will not affect their bottom line.
In fact, if you have a mail order pharmacy benefit as part of your ins plan, the ins co will actually pay quite a bit less than the going price. They negotiate special below market prices for drugs, especially brand names. So, pharma could actually end up doing better if the patient rather than the ins co pays for drugs.
In other words, don't count on big pharma to bail us out.
Posts: 8430 | From Not available | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
If the insurance companys reject the claim for meds I know alot of people who just don't have the cash to buy the meds.
And they will not be bought. At this point I won't trust anyone to "bail us out" but ourselves.
I think lesley1954 has a valid point. Hit them where it hurts the most. In their pocket books.
I am so angry at this point I can't see straight .
They took away the only LLMD in the southeast. Me & alot of others have no place to get treatment. Only the affluent people or people well enough to travel may stand a chance.
Now they are taking away our meds & coverage!!!
I will, if I have to take wheel chair service to DC
I don't care if I relaspe more from the trip. I am already screwd & without help.
So lets all pack up our walkers, canes, wheelcahirs & head for the nearest city & do some screaming. Maybe burn some flags.
We need big attention. I for one am not going to lay around at home & rot be left for dead!
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Maybe one way to look at the big picture here is to break down what is best to do to NOW (the next few weeks)
what to do over the next few and more months,
and then what to do over the long haul, cause there just is no doubt that there is going to be a very long haul involved here.
My quick vote for what to be working for right now is to put political pressure on reps before THIS election, that is right NOW.
Pressure them to support addtl lyme research funding legislation, pressure them about the corruption of the ISDA guidelines, tell your stories. Go in a wheel chair to YOUR LOCAL REP's office. Call the media to tell them to meet you there. If you can't do that, write a letter or send a fax. Need help finding contact info for your rep? Post in activism and someone will help!
Skipping to the long haul. There will be always be ISDA type guidelines until there is a body of Columbia uNiv type conducted science that swamps the cherry-picked and distorted data of the ISDA's. IMO, any and all efforts to get funding for reality-based TBD science are critical.
Back to my fog of the day....
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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People in the SE need to go see their reps, ask about the lyme bills in public gatherings with reps running for re-election. If in NC, go see state legislators, tell them how this has affected you. Picket the NC state medical board offices. Make this a public scandal, not just a private injustice and tragedy.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
The more I think about this, the more furious I get! Lyme bills are great, and they DO protect our doctors... but this is just down and dastardly denial of service to a very ailing community. (I can't help but think that some of this is payback for the organized efforts we, as a community, have already put in place.)
There is a special circle of H*ll reserved for the IDSA folks, and I believe it is crawling with ticks....
I actually agree that hitting the Pharma companies is a good idea... I know that without insurance, I won't be getting the drugs at all --and I know I'm not alone! I simply can't afford out of pocket care, and I'm in better financial shape than a lot of you, since I am still able to work (for now, knock wood!)
I'm also rather attracted to the "hobble on Washington" idea, though I doubt it'll have longterm staying power. Am I jaded, or just realistic?
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Many good ideas here.
May I suggest?
This weekend at LDA?ILADS conferences there are additional meetings going on and we will be discussing plans and actions to take on this topic.
Just to save yourself time/stress/energy...
Maybe wait another week.. until after the meetings and things have been discussed and planned. Once we have a solid plan.. sorted into areas of who can do what.. the best use of our resources... THEN we can unite and ROCK and ROLL!
Yes.. I am as anxious as everyone.. but I do know to be effective and make a difference we must focus on what will get the job done best... then go fo it.
Now.. hear this..
I am NOT saying for anyone to not do what they want now. Please feel free to help yourself and do what makes you feel better.
I am just saying one big hurricane coming at you can raise more eyebrows than a bunch of scattered thunderstorms.
In the meantime.. may I suggest?
Write a short version of YOUR story to have ready to mail. Make it so your audience can be anyone from the media to the legislators. One page is perfect.
Make an updated email list so you can contact everyone you know to help when the time is right. We will have to move fast when the time comes.. and it is hard to keep up if you aren't prepared.
Make a list of all your local legislators.. if they aren't already on the activism list over in the activism section at LymeNet... to have ready.
Make a list of contact information for any and all folks who will NEED to know the situation so they can react and help. Focus on people who are most at risk...
Examples:
Local and state and federal parks in your area,
Electric and phone line workers,
Natural Resources Police,
Outdoor business (camp grounds, kayak outfitters, wild fire teams, etc)
Road maintence crews for state and local areas,
Animal hospitals, vets offices
Schools in endemic areas,
And so forth...
By the time you get that done.. and it WILL be needed... we should have come up with a plan of action.
.........When more than one standard of care exists, the critical question becomes who decides the appropriate course of treatment for the patient. Under the medical ethical principle of autonomy, the treatment decision belongs to the patient.
Hence, the American Medical Association requires that the physician disclose and discuss with the patient not only the risks and benefits of the proposed treatment, but also the risinsks and benefits of available alternative treatments (regardless of their cost or the extent to which the treatment options are covered by health insurance).[20]
For example, patients with prostate cancer (where significant uncertainty exists regarding long-term treatment outcomes) must elect between watchful waiting, radiation and surgery.
The legal doctrine of informed consent also requires that patients be advised of material treatment options. Treatment choices involve trade-offs between the risks and benefits of treatment options that only patients-who know the kinds of risks they are willing to run and the types of quality of life outcomes that matter to them-are uniquely suited to make.
.........Respect for the basic autonomy of the patient is a fundamental principle of medical ethics. Without adequate information about treatment options, their probable outcomes, and the risks and benefits associated with each, patients cannot act autonomously.
Today, however, many patients are either denied treatment by their HMO physicians who follow actuarial treatment protocols generated to keep treatment costs down, or they must find an independent physician to treat them, with the all but forgone conclusion that coverage for this treatment will be denied by their insurer based on cherry-picked (economically favorable) guidelines. Moreover, HMO physicians generally do not advise their patients that treatment alternatives exist.
THAT'S A BIG POINT THAT OUR DOCTORS DON'T TELL US, AND IDSA SEEMS TO DENY IT EXISTS!!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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bettyg
Unregistered
posted
CONGRESS LEGISLATIVE LIST STARTED OF 50 STATES...
federal senators/reps names/addresses/phone no./emails!!!
Use Hayley's list and contact YOUR state's house of rep SHOWN on her list involved in the HR bill that is being held up by their committee.
Contact YOUR LOCAL REPS OFFICE in your state. Find out when/where they will be in your area, and see about SCHEDULING appt. to meet with them about signing off on the bill
and giving them your story..typed/printed about your chronic lyme and how IDSA's guidelines are screwing you to be left bankrupt...
without a home, medical bills you can't pay for, and living on the street with NO medical treatment...
ACTION IS NOW!!!
I also agree w/Tincup on finding out what the LARGER group of top LYLE LEADERS think would be best, but we've got to use these days/hours to OUR ADVANTAGE NOW!
They will be MORE AVAILABLE NOW; towards last few days; they will not be available to SPEAK to; or hear from!
That's my opinion and as Ann-Ohio says, "I'm sticking to it!" now to bed, Bet tyg
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Wow-
3 really useful/insighttful posts in a row about responsing to ISDA guideines. I'm glad I stopped by.
Thanks for your list of to-do's, TinCup. It seems like a pretty comprehensive and important list of materials -to-have-at hand/and distribution to public contacts -to-have -lined up for anytime at all.
I look forward to hearing what the LDA/ILADS etc. recommendations are for action- couldn't agree more that unity and coordination in action is vital.
But I also don't think that there is any conflict of interest or waste of energy in acting NOW to lobby our reps.
I agree with you 100%, Betty. The election is only 3 weeks away, and getting more crazed by the day. The last week before the election will be focused intently on internal campaigns' stuff- GOTV, etc.
Elections like this don't come every 2 or 4 or even 8 years. This is a great window of opportunity to genuinely be heard, and this particular window is closing quickly.
(PS- most observers believe if the DEMs take back the House- a very good possibility- there will be little to nothing accomplished in the lame duck session, then a great deal of agenda-rearranging. My guess would be TBD issues would be about oh, 1,000th on the list of things to do.
And if the Republicans hold the House, there will be a great rush to get things passed, but hmm, good guess is none of it will have to do with TBD's. )
Gail- What a wonderful point about the legal doctrine of informed consent!
That notion may not carry the day in this particular battle at this particular time. But it seems a GREAT banner to raise in a much longer fight by patients/patient advocates against the "evidence-based medicine" fad that is helping to deeply warp how medicine is practiced here in the US.
Here's to bottom-up AND top-down advocacy!! Methinks the lyme -world needs both.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
This specific benefit exclusion is: This medication is not FDA approved for this condition and this indication is not an accepted use per Stand Reference Compendia.
Additionally, the Infectious Diease Society 2006 Treatment Guidelines for Lyme Disease specificaly state the following:
Because of lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme Disease: .....
COMMENTS / QUESTIONS!
*How long does it take for a drug to be approved by the FDA for a particular use?
*Is that what Dr B is working on now?
*Are there any Rx drugs left not on this list?
*How does this effect Babs, Bart, etc? (Ketex is approved for mycoplasma I know)
*How do you get approval for "experimental" trials?
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
This specific benefit exclusion is: This medication is not FDA approved for this condition and this indication is not an accepted use per Stand Reference Compendia.
Additionally, the Infectious Diease Society 2006 Treatment Guidelines for Lyme Disease specificaly state the following:
Because of lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme Disease: .....
COMMENTS / QUESTIONS!
*How long does it take for a drug to be approved by the FDA for a particular use?
*Is that what Dr B is working on now?
*Are there any Rx drugs left not on this list?
*How does this effect Babs, Bart, etc? (Ketex is approved for mycoplasma I know)
*How do you get approval for "experimental" trials?
Posts: 242 | From Mississippi | Registered: Oct 2006
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