posted
I have heard that this doctor is no longer doing lyme patients and is not giving out abx anymore. Does anyone know why?????
Posts: 256 | From Boston, mass | Registered: Jan 2008
| IP: Logged |
bettyg
Unregistered
posted
dian, same story why ANY of our llmds aren't ... being investigated or threatened to be.
IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I wouldn't say ANY of them aren't giving out abx. Some are no longer doing it, or take a very conservative approach.
Dr. L was accepting many insurance plans and that accompanied by a Lyme dx can spell trouble for LLMD's in certain states. MA is one of those states.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
This situation needs to be dealt with. I have asked Merrygirl and Tracy to contact Pat Smith and to begin finding a way to unite patients of this LLMD and to find out exactly what happened and what can be done to help.
Patients need to unite and follow a leader. The Massachusetts Lyme Disease Advocacy group is one possible option to unite through. We can not allow this LLMD to be all alone in this without the voice of the patients and their advocacy representatives.
It needs to be her patients and their family/loved ones who take the lead on this initially in my opinion. Put together a team and find the truth. Spread the word about this post to other patients. Get the dialogue going.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Ok, I have to know - did Dr L himself or his staff tell you that he is no longer taking Lyme patients or is this hearsay that has not been checked out? Really need to know this as my son is his patient and we haven't heard this... thanks.
Posts: 89 | From NC | Registered: Jun 2008
| IP: Logged |
posted
First of all, Dr. L is a woman. Secondly, she has told her patients directly that she can no longer treat them for Lyme. It seems that she might wait until they go in for their appt. to tell them, but some she has called.
Do not confuse her with another prominent LLMD in the Northeast.
Posts: 588 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
posted
Thanks for that clarification! Much appreciated luvdogs....
Posts: 89 | From NC | Registered: Jun 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes the data has been confirmed. Patients who see her are encouraged to contact her personally to ensure they're clear if they have questions. I'm attempting to still find out what's going on as patient reports come in.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Remember she was NOT a solo practice. Maybe her "bosses" asked her not to treat Lyme.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
posted
The sad situation is that no matter what happened, she is obviously being made to stop treating by someone with a lot of influence.
I suggest you contact the powers that be there and let them know how loved she was and how unfair this is to us as patients.
Let them know that you were being treated and if you were getting better.
Let's not go down quietly. Let your voice be heard. Someday they will listen and get it.
-------------------- But the greatest of these is LOVE Posts: 19 | From New England | Registered: Mar 2009
| IP: Logged |
bettyg
Unregistered
posted
faithhopenlove,
please go to ACTIVISM, and do a search for wisc. llmd who they notified...by wisc. health dept.
those people rallied strong:
emailed, wrote, FAXED, snail mailed their legislative folks, the health dept., .... you name it and wrote letters to editors galore.
they did so much hollering the wisc. health dept. BACKED OFF AND NO HEARINGS EVER CAME OUT OF THIS.
private message mike...can't remember his nickname here .... PM ME; i'll give you his email addy.
IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I agree with Betty. Rally people, rally. All her patients need to get extremely angry and write letters.
I got a report today of exactly who is responsible for what's happening to her. It's the Boston Medical Board. She's in big trouble.
A patient reported this to me.
quote: She then went on to explain her reason for becoming a Lyme Doctor, she had a very young boy as a patient who was very ill and no one could figure out what was wrong, and after going to a seminar of Dr H, she began treating this child appartently he is doing well. I did discuss with her that maybe someday she could come back on to help us Lymies and maybe open a practice further West of Boston, she chuckled and said that would be nice. She went over all my test results with me and told me what she thought I should be taking such as supplements and did give me 4 prescriptions, she said she was sorry but that was all she could do, she wished me good luck, The last thing she said was that I should see Dr R.
[ 04-06-2009, 09:12 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
ok folks, i used the search for this dr. i discussed about and found these 2 informative ones to give you IDEAS WHAT TO DO AS A COLLECTIVE GROUP TO "RALLY AND FIGHT THIS TOOTH AND NAIL"!! *****************************************************
actually need to contact about this.
Posts: 571 | From Massachusetts | Registered: Oct 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
For your Massachusetts contacts, research out to these people. See what they can do to help you organize. They are the Massachusetts representatives Contacts.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
In my opinion, I would not contact Marino Center or she may be out of a job entirely. I'm sure they don't want their name associated w/any of this.
I would say the Boston Medical Board and legislators. Contacting the hospital would do nothing at this point since they are the ones that put up a stink and probably reported her to the medical board.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
First Thing First: Contact Pat Smith
I think you should begin by contacting your primary advocacy groups, Pat Smith of the Lyme Disease Association to start. Tracy, why don't you contact Pat and handle that piece. After you do that, you can delegate the rest of the energy down a trail using an e-mail list, which I'll explain.
Let The Advocacy Leaders Lead
The advocacy leaders (Pat Smith, MA Lyme Coalition or whoever else is currently established as our hub in MA, needs to be brought in to do the primary leading and even set up support group meetings so many of you who can go, meet together face to face to also deal with some of this. The big advocates like Pat and your state Lyme Hub Group can deal with the political and legal statements, advice, etc or how they want individuals rallying beneath them to move.
My Limitations
The thing I'm handling right now is filtering information as random patient reports come in. That's how I figured out this stuff so far, but it's a huge amount of work just doing this, so I can only direct/mismanage somewhat, hehe. I'm like a telephone switchboard operator these days. I'm maxed out beyond that.
Who Within Massachusetts Is Our Advocacy Group
Ask Pat who you can contact in Massachusetts to advocate and lead. I'm not sure if the names and e-mail addresses of those individuals are still active, but try them too.
Start an e-mail list to build hard-core recruits
Why don't you start an e-mail list, so you can talk privately with patients without outside interference. You collect their e-mails, and then you put them in the "Cc: field of your e-mail letter as you send it. Put your own address in the "Send To" area.
This will take your statement and privately send it "only" to the group of people who you ask to speak with. This way only those very serious about contributing can give their energy and time. I'll join but like I said, the rest of the ideas have to be delegated, I can't do more than I already am.
You can start the e-mail list with me if you wish. [email protected]
Use Lymenet Activism Forum
You can have anyone else you want PM you their address if they're dead serious about "activism" on this specific subject. You can recruit people from Lymefriends, as well as here at Lymenet in the Activism forum.
Use that forum to get advice too. There are political advocates on this board who are specialized and suited to answering more of your questions.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Trish, many of us cannot read all caps posts. I am one of those. On the Internet it is also known as screaming.
I know you want to get your point across and are understandably upset about this. However, you will reach more people if you use lower case rather than all caps.
Thanks for understanding.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
posted
The following is listed on the Commissioner of Board of Healths profile page. It may help in writing letters. I've also included the address of the Executive offices.
Commissioner John Auerbach "Helping People Lead Healthy Lives In Healthy Communities"
We believe in the power of prevention. We work to help all people reach their full potential for health. We ensure that the people of the Commonwealth receive quality health care and live in a safe and healthy environment. We build partnerships to maximize access to affordable, high quality health care. We are especially dedicated to the health concerns of those most in need. We empower our communities to help themselves. We protect, preserve, and improve the health of all the Commonwealth's residents.
One Ashburton Place, 11th floor Boston, MA 02108 617-573-1600 LETS SEE IF HE WILL LIVE UP TO THIS!
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
That's a great place to start!
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I think we need to write letters and fill up his voice mail box too.......along with alerting the Boston Globe and Chronicle and Channel 5....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I just made a post in the main forum linking to this thread. I'm not sure if this can be moved to Activism or not. If it is, will my link still work in the Medical Questions forum post or will I have to edit it?
Anyway, to read the post in Medical Questions, go here:
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Someone needs to begin collecting e-mail addresses privately via PM to begin the Massachusetts Activist Discussion.
Could someone come forward and take over this responsibility? It is a private method that all of us have access to, and will allow a large group of people to easily begin exchanging the necessary ideas that we'll take forth as this process evolves.
posted
I was wondering about this as well, Tincup. Thanks for bringing it up.
Seems it would be prudent to apply caution when we are talking about someone's medical license and livelihood.
I've only "spoken" to her via email since this broke & it's highly unlikely she'll put anything in writing to any of us.
quote:Originally posted by Tincup:
Did anyone have direct contact with the doctor and did said doctor ask anyone to do these things?
If not you may be hurting rather than helping. And I know that is not your intention.
PLEASE check that out and ONLY do what the doctor and their lawyer request.
Posts: 571 | From Massachusetts | Registered: Oct 2008
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Just some suggestions or thoughts:
Build a larger organization by spreading the word of what lyme is through the movie under our skin. The best way might be to get every church in ma. to show it in each parish. Get everyone talking about the disease.
The more people seeing it the more difficult it is for the legislators to ignore it.
Once the movie is seen by as many as you can, start creating petitions for referendum changes. This will take time!
The medical review board is appointed by the governor of the state. Do some investigation of the individual doctors on the review board. Get familiar with their relationship with governor. What their affiliations are and how they got to be on the review board in the first place.
Just collect the information as best you can to create a dosier of the situation so you can assess how you can best act politically.
Find lawyers within the lyme community or are lyme community friendly. To help pursue legal matters.
Join other forums with chronic illnesses. They are impacted every bit as much as we are with the heavy handed approaches of these medical review boards.
The rallying cry shouldn't be about LLMDs it should be about helping doctors feel free to help get their patients well. Whether it's lyme, fibromyalgia, ms, parkinson....
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have a few emails to people involved, and I am hoping for a direcct response to that question of wether she wants help or not.
I do think regardless of wether she wants help we should still be able to write letters to "them"....
can we move this post to activisim?????
thanks, melissa
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
posted
Contacted Commissioner Auerbach's office of the DPH and they are very interested in what is taking place but we must put it in writting. I was going to send a letter to get the ball rolling. They are waiting for a letter from Me and will make sure the commissioner receives it. I believe if we make Dept of Health aware of what the registry is doing they can interfere with the process or at least know that the information I give them is accurate. Followed hopefully by the rest of the lyme communities power. Shall I move forward?
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
trish, do NOT move forward until you get DIRECT FEEDBACK FROM THIS DR!!
melissa contacted 2 contacts; wait for what they find out directly from LLMD...thanks.
trish, please go back and edit your ALL CAPS posts so we can read what you typed; just click on pencil to right side of EACH post back-to-back you posted. we sure would appreciate it...thanks!
IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Trish, I say yes, move forward.
I understand the concerns around the doctor's safety.
If we do nothing, we are colluding with the very people who have just caused 300 people to very possibly be denied treatment and/or cure.
If we do something, we are showing intolerance to this action.
I'm thinking we don't have to "name" the doctor, but why can't we contact the media about this ATROCITY, particularly media who have been doing Lyme related pieces lately, like Chronicle?
Why can't we write all the powers that be without naming her name?
I can't in good conscience do nothing, it feels very wrong.
What was that thing that Margaret Mead said? I think it SO applies right here and right now.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Do we all understand that there are patients with PICC lines in their arms and no where to go? I personally was at DR. L's office yesterday listening to her talk about how upsetting this is, and how she has NO WHERE to send them.
It isn't just "oh well, gotta find a new doctor." It's hundreds of people who are going to backslide, get worse, maybe relapse to the point of no return, have PICC lines with no IV meds and no one to order nursing care for them....
This is a crisis. Yesterday she told me the only doctors she felt comfortable referring her 300 patients to have already stopped accepting patients.
I gave her the name and number of my doctor I am returning to. He is great. I saw him today and told him of the situation. Guess what he said?
He will only take a very few patients. That's it. And I happen to know he is pretty much the only one she is referring patients to.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
She is scared. She has two little children and has only been in practice in MA for six months.
Of course she is going to say no. If she wanted to fight this, she wouldn't have shut down her practice so fast.
We need to find a way to fight this as a community, and protect her as best we can. If enough attention is drawn to it, I think it can only protect her more.
This isn't about the doctor's feelings, though I would be the FIRST person to be concerned about that. I personally care deeply and am very fond of this woman.
But I feel that we are showing her how much she means and how valuable she is by taking action. It has to be BIG enough action to not put her at risk, and she does not have to be personally named.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
LOOKING FOR SERIOUS ACTIVISTS
Anyone who is "seriously" interested in contributing to the activist aspect, which is the deep detailed work, PM me.
FOLLOW THE LEADER?
Anyone interested in following advice given by the higher activists once we have plans in place, stay in this thread and in the thread in seeking doctors:
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Ok everyone. All the "leaders" know where I want you to discuss "organizing details"
The gritty, messy, debates, and confusion will be done at a separate website privately between those who are really getting their feet deep in the mess.
From this point on, I would like seeking doctors and medical question threads to be public domain where the leading advocates of the Massachusetts campaign release the coherent data that we've actually organized for public consumption on the private website.
It will be up to you, the public to write letters, make calls and put into action the details we flesh out. You don't have to join if you don't wish, this is not a "draft" militia.
Leaders with skills and talents in media, legal, political, journalism/writing, speaking, and communication in general are encouraged to join the deeper project. You will be working in teams with other individuals with your same skills.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
The doctor in question wants no hep from us. She was very appreciative, but she thinks it wil a settle down. I got info today.
melissa
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
This is bigger than the doctor in question. This is about care being robbed from 300 patients who are desperately ill.
I knew she would want no help. But WE need the help. 300 patients with no where to go need the help.
We can act, there are things we can do that do not directly relate to her. This is a HUGE issue, not just a Dr. L. issue.
Michael, thank you from the bottom of my heart for taking charge. You are an angel. I am just too sick right now to lead anything. But I will do whatever I am told.
Creative Guy would be a great asset, too. He writes a mean letter and is very gifted in the activism area.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Alright, so we're expanding this campaign. It's regarding "all" physicians in Massachusetts, and all patients in Massachusetts involved in Lyme Disease and associated infections.
We'll continue forward without involving the physician. The concepts and issues are the same.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Ok. So certain doctors don't want us to mention them we dont have to! We have a perfectly legitimate fight of our own here. We must get the state to stop threatening doctors. No names just leave them alone since we are offered no other avenues to health. No treatment guidlines offered by anyone! Governor Patrick put this group together now they are taking our doctors. I think that is where we begin! We begin now and hard.
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
| IP: Logged |
posted
Betty G. Caps are gone. I deleted both posts even tough they are the only thing I and many can read. I am not screaming at anyone by using caps. clearly your vision is what is important here. do you know how trivial this is? how many emails you've sent me over capital letters? I've got bigger problems than caps and retreiving emails because I did so. Please consider this before reprimanding me when my health is the way it is and my future so uncertain. thank you
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
This post is for everyone who has volunteered to help. I'm responding to Tin Cup, but the same information is also for you.
Your Skills and Talent
Tin Cup, what is your primary skill -- your strongest talent? We have four primary group leaders right now. Tracy will be setting up a private discussion forum on a different site where we -- the leaders -- will collaborate in teams.
Currently we have:
4 Main Groups To Take On Challenges
Media and Legal: Merrygirl is currently leading this. Obviously it involves finding out the laws we need to review, and preparing media contacts through the news, etc. Merrygirl can give a description of her strengths and what her goal is. Anyone who has similar skills or interests in this, will work with her in a team. Merrygirl lead the charge on talking to other leaders, including the main advocacy groups and gathering their wisdom and advice. On Lymenet under the "Support" group section, look up the Massachusetts leaders, and contact them. Speak to the leaders in Connecticut, as well as in California and Rhodes Island -- and finally, Pat Smith. This should keep you busy -- without overwhelming you -- for awhile, and report back.
Political: This involves which people will be contacted politically. Trish is the best leader for this direction in my opinion is gearing up and finding out exactly who we speak to politically, and where our focus needs to be. She's already begun doing what Merrygirl suggested regarding "who to write, call, fax, e-mail, and the addresses and such." It seems she could pull this off for Massachusetts. Generate a list of the representatives for each county, as well as our senators, and anyone within the individual departments, such as Commissioner Auerbach's office of the DPH. She'll let us know who she finds to be the most valuable contacts.
Website Activism: Tracy will do what she always does well-- talk, and talk a lot -- she's awesome at it. She'll talk about what we're planning by directing patients to these threads (Dr. L in Seeking, and Are We Angry, in Medical Q's). She knows a lot of people in a lot of places and is running one of the focal point websites. She will talk with other people who run other websites about Lyme, and begin advertising this "Be all you can be, Army Of Millions Union".
Communications and Recruitment: This group is the primary leadership position at this time. I am currently leading this. This is a position of motivation, directing, organizing, etc. I will continue to monitor changes going on in the community via individual members, and collect information and try to regurgitate it coherently for the public viewing on Lymenet as we collect data in the private discussion. I will also try to motivate people.
Information Exchange Will Occur
These are the primary groups. Obviously each group is welcome to work on the other groups issues indirectly and to pass data back and forth between the teams. We all come in contact with information that crosses over so it's best to pass it on to the specialized group when we learn something new.
Recruitment
We are recruiting right now. Who wants to fight? We're going to kick some serious ***, and we're going to do it right.
The goal of our recruitment is simple. I once heard a quote that goes: "The best leaders aren't those with the most followers, but rather those who create more of the same, more great leaders."
How Is The Heiarchy Built?
We want teams to generate mutual give/take relationships. Debate is encouraged, but a final say will be done by the elected leader of each team. At present we're arbitrarily assigning direction based on talents and skills. We expect natural leaders to arise.
Conclusion
My ideas and direction are open to discussion. If someone doesn't like how I handle things, or wishes to give me private opinions, please do, I have never done anything like this. I'd be more than happy to pass on the position and work under someone, in-fact I'd be more comfortable that way, but for now I'll do what is needed.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Our Goal
Trish explained what our goal is. We have many subgoals on the road to this destination that will appear but need to be established as information comes in. Our mission statement will be designed around the core concepts that other advocates (including Tin Cup) have recognized as fundamental and strong supports. We want to avoid the "pot-holes" on the road to our destination.
So our main goal: "Our goal here is to adopt legislation that will enable our LLMD's to treat lyme beyond current guidelines without fear or threat from the state medical board. Eventually getting a spot light on HR 1179 and finding congressional leaders to sign on."
This goal will likely change a little. I'd like to expand on the shortcomings of the Rhode Island and Connecticut issues in their bills and create a stronger bill also preventing insurance companies from denying claims when physician "do" have the ability to treat beyond the current IDSA standards.
E-mail List
I like the idea of an e-mail list and have been working on this for awhile. I'm going to ask all the team leaders to e-mail me at [email protected] with the subject line "I'd like to join" and then provide the e-mail you'd like signed to the group in the message field.
Anyone who is interested in joining a team to flesh out courses of action, to assist in applying your connections, talents, whatever -- PM me here and we'll talk, and then I'll take your e-mail address.
I am also going to unite us with the Rhodes Island leaders via the e-mail list if they're willing to join our team leaders. Any team leaders or activists from Rhodes Island and Connecticut who have input in what the Massachusetts team is doing, please join our e-mail discussion. E-mail me at [email protected] and say "I'd like to join" in the subject field and then post the e-mail address in the message field that you'd like the group messages to go to.
Regional groups in Massachusetts are also working on projects, and I'd like to unite all of Massachusetts. I want to know what others are doing. I want to be flexible and know where we can help "them" if they have already paved some roads. I want their input and ideas.
Silence
From this point onward (after I've collected your e-mail and sent you the first group messsage), details of the directions we'll take are not to be posted for the public to see until we've mastered the underlying organization. This is "Only" for the team leaders. We will design a "Call To Action" arrangment when necessary. As Tin Cup stated: There are eyes and ears watching, and this I know for a fact, so let's keep the chatter off the main forum.
Tin Cup
I know exactly where to put you now. You're in the fourth group with me. You have wide spread contacts, and provide tempered reason to the emotional motivation, allowing us to better focus our aim. Rather than using a shot-gun out of emotion, you'll help turn us into snipers.
Constructive Criticism
Constructive criticism is absolutely necessary and any of my team leaders who encounter it, I'm trusting you to accept it and process it -- even sleeping on it -- if you feel frustrated by it or sapped of energy. You do not have to take all the advice given, but you are expected to be mature and to not react. If you're sick and unfocused and irritable -- don't post until you're cooled down and stable. Do not take anything personally in this arena of activism. The only thing we take personally here is the way in which the enemy has injured, killed, embarrassed, dismissed, and minimized us or those we love.
Advocates Have Reported
Reports have come in regarding how to politically accomplish our final goal, and it is "not" by writing massive amounts of letters or contacting the media immediately. I want those of you in those groups who are handling media and political areas to do your work quietly and only discuss it over the private e-mail group. We have a lot more planning to do. Do "not" send out anything at this time, just work on designing the letters, and collecting the contacts.
If you're in agreement, say "Yes" here on this section, then e-mail me to join the group.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic