Geeze you talk about a mole or how many stars are under your name and you get tons of responses.You say theres a chance to speak up about the way lyme is treated and what,no responses.Dr Jones has saved thousands of kids(alot on here)and theres no support for him,hes not the youngest man and yet he comming to be a voice for us.Dr Fallon is probably comming from NY and Pat Smith for NJ or somewheres around there and Dr Cameron.For the sake of the children who will get lyme I would think there would be huge support for this.I dont get this AT ALL.im so disappointed.I dont think Im out of line when I say shame.How come no responses to the Mass lyme hearing?
Posted by sofy (Member # 5721) on :
I can only speak for myself. There just isnt enough of me to get there. On a really good day Im thrilled to be able to drive the 2 miles to the grocery store. Its been 2 weeks so far.
Posted by Lymetoo (Member # 743) on :
Could you give us the link where this is discussed? I usually focus on helping people. I'm not anywhere near MA, so I tend to ignore things.
If it's something the rest of us can get involved in, direct us to where it tells us about that and what we can do.
DR J has plenty of support, but perhaps I missed something here?
Tell us what we can do.
PS...You need to remove drs names in your post
Posted by chainsaw joseph (Member # 6611) on :
I only posted docs names because it was already posted in the hearings info.Sofy,I totally understand,dont know if I can do it either but I have e-mailed people and a few newspapers and will write my letter.you could write a letter please and maybe contact your local newspapers.Lyme has beat me up so I dont know if i can pull off going,but I will try and if I cant I know I tried to do something.We just cant allow opurtunities like this to pass by.
Posted by robi (Member # 5547) on :
Are you thinking lymnet folks from hundreds of (or a thousand)miles away should attend ? I have to take someone to the doc with me and shes only 2 hours away. If there are other supportive things we can do let us know.
robi
Posted by Aniek (Member # 5374) on :
I emailed somebody from the lyme org in MA and never got a response. I didn't think there was a need to post on here about it.
But, if anybody has answers, I'm looking for more information on what the lyme advocacy goal is with the hearing. I know a state senator on the committee. I'm out of state and can't attend the meeting, but will be in the area the week prior and will meet with him if I know what I'm supposed to say.
Posted by chainsaw joseph (Member # 6611) on :
Im in same boat Robi,dont know if I can make it.You could read the hearing info,write a letter,e-mail any friends,notify you newspaper.Ive been reading you struggle with lyme hear for a while so you know how important this is.Thank you and i hope you feel better.Im open to any sugestions for the people who cant physically make it.Let just team up stong,please.
Posted by Lymetoo (Member # 743) on :
I live in MA. I am so sick I have someone who comes in to do my cooking, groc. shopping, laundry, etc. I am nearly broke as a result. How can people who are this sick be expected to deal with the politics of the disease when they can barely exist?
Posted by chainsaw joseph (Member # 6611) on :
I hear you Durameter,this disease has got a hold of my mind and nervous system,dont think i can cope with sitting in a meeting(but I might try).Could you write a letter,maybe inform your local newspapers,we need to do something so other people dont suffer as you and I.Thanks
Posted by lymeHerx001 (Member # 6215) on :
im confused,,, actually im broke and tired and confused dont know whats this all about
Posted by lou (Member # 81) on :
People in MA who are not able to attend the hearing could definitely write a letter to local paper telling about the hearing and the need for it, the consequences of late lyme and being unable to get treatment, ins co, lack of docs.
Bet there are readers of these papers who could go and just need to learn about it. That way, if you are too sick, you have found one or more substitutes! Plus you could ask people to write to their representatives, or whoever the MA coalition is suggesting. Write yourself, and mention this need in your letter to the editor.
In other states, people have asked friends, relatives to attend in their place.
Posted by DJP (Member # 5893) on :
I live in Mass and will do everything I can do get there.
Everyone who can't make it whether in MA or out of state should write and tell your story.
What should you emphasize? What have we been complaining about?
Lack of reliable testing Lack of doctors willing to treat Lyme Doctors ignorance when presented with Lyme - including diagnosing, testing and treating. Insurance company issues Prosecution of doctors willing to treat chronic lyme. Two standards of care - short term vs long term treatment
What should you ask for? Funding for: Better testing Physcian education Protection for doctors willing to treat chronic lyme Research supporting balanced views Public awareness/prevention
This is a huge opportunity for us to have our voices heard. I don't know specifically what their goal is, but we need to let them know what the issues are now!
forward a copy of your statement by October 1 to:
Send your letter here by Oct 1: E-Mail: [email protected] FAX: (508) 563-7780 Snail-Mail: Massachusetts Lyme Disease Coalition P.O. Box 1916 Mashpee, MA 02649
[ 21. September 2005, 08:13 PM: Message edited by: DJP ]
Posted by nannie (Member # 5250) on :
Although I realize that it was probably unintended, shaming patients into writing letters and openly disclosing details about their illness (i.e. private health information) does little to motivate patient support, and can do much to alienate.Dragging sick people into your political issues and agenda will not do much to accomplish whatever goals you are seeking to achieve.
It would seem to me that judging from some of the responses, many patients are in dire need of help and assistance for themselves. Although they appear to be asking for help, I question why their disclosure of need is met with continued response and request for their assistance. There are times when no means no.
When someone posts that they are unable to properly care for themselves, and that they have been forced to hire someone to come in and assist them, rather than posting a response asking them to write a letter to support YOUR agenda, perhaps you should stop asking them to help you and ask them how you can help them out.
In addition, ALL of us need to consider that this is a PUBLIC board. A stranger wandering around the Internet who happened to stumble into these posts might misintrepret or question the agenda and motivation behind some of the posts.
Posted by lou (Member # 81) on :
It is astonishing that someone could still not understand the need for political action. This hearing IS to help patients. And it is being organized by other patients and their families. And they are only asking people to do what they can.
I think joe was frustrated at seeing the board just continue on with immediate issues, not seeming to understand that the problems are all related and that we are now at just about the worst situation for lyme diagnosis and treatment in the last 20 years. And yet people don't seem to be doing anything to help out the few who are doing all the heavy lifting. They are doing this to help US, not the other way around.
Yes, it is true that people in other parts of the country can do less than the people of that state, so that can make it sound like they are not interested. And it may be the case that things are being done without any evidence of it online. Hope so anyway.
If we don't help ourselves, there are going to be more and more people unable to cope, having to hire help, being ruined financially, and never being able to work again. No group who has tried to improve our situation has gotten the kind of support they deserved. Why is this? It is so disheartening that anyone could misunderstand and not see the need.
Please don't pass judgement on people. Those that can be there - who are not too sick or too broke or too far away - I am sure will make every effort to be there.
My friend from Florida (on Lymenet) is going, and I would also go even though I live outside the United States - even if it does make me worse, however, I cannot afford to go becuase I will only just have come back from the US to see my LLMD there. I can't afford a transatlantic twice within 2 weeks! Otherwise, I would 'get right back on a plane' and go again!
So, I don't think it's a lack of interest, but some of us are restrained by finances, distance and being too ill to travel a great distance, etc.
I have also emailed everyone I know with the hearing announcement, but I did not announce that on Lymenet - but it doesn't mean I'm not interested.
DLL
Posted by Aniek (Member # 5374) on :
DJP,
That's a lot of information for legislators to absorb. Are there are 2 or 3 top priorities we should emphasize?
Thanks, Aniek
Posted by sizzled (Member # 1357) on :
Send a short statement on the value of what antibiotic therapy has done for you.
MassLyme @aol.com
(Psst! This is Steere territory....Them that don't want you to have more than the 'standard' dose.)
Posted by lou (Member # 81) on :
DLLiver, you are excused. No one expects heroics or impossibilities, just doing what is possible. Getting tired of hearing myself say this.
This is not passing judgement, just encouraging folks to fight for their own cause and not expect others to do it for them. Failing to change our current horrible situation will result in more suffering to people already having tickborne diseases, to people who will get them in the future, and add more names to the obituary list. This is not an overstatement.
If you are a newby and don't know why we are having to do this, google the Lyme Times, and read past issues of the newsletter in the archives.
Posted by Kara Tyson (Member # 939) on :
I am disappointed in you and your evaluation of people here.
Posted by DJP (Member # 5893) on :
Hi Aneik,
I guess I got so excited when I saw that they were actually having a hearing at the state house I got carried away.
I was just trying brainstorming a list of things that we could write about.
As sizzled wrote...this is Steere territory and most doctors here adopt that perspective. So, perhaps you could emphaze how long-term antibiotic treatment has helped you as sizzled suggested.
Thanks
Posted by chainsaw joseph (Member # 6611) on :
If you can complain about how I posted than you surely can complain to the Mass hearing boared by sending an e-mail.Everyone who said they couldnt make it I totally uderstood and just asked that they e-mail their testimony or contact a newspaper.Unfortunately,lyme is politics,thats why we have to fight for treatment,fight for insurance covereage and get misdiagnosed.This last statement is my opinion,take it or leave it-if you can post on lymenet you can at least send a testimony to help try to improve the way lyme is treated.Four great representative are comming to speak for us and we arent going to rally behind them,whats your plan,Im listening.We need to stand up,Steere isnt just going to go away,we need to make ourselves known,somehow.
Posted by daniella (Member # 6753) on :
I am willing to pick people up and bring them. I have a vehicle and will possibly have two that day. (my girlfriend and myself)I can pick up people from south western ct and bring them to the hearing area in Mass. and (of course) return them as well...
Let me know if anyone is interested.
daniella Posted by Christine202 (Member # 6158) on :
I do not think it right to pass judgement on people. Many of us have our plates full just trying to live day to day...
Others might not want to get involved in the politics of this disease and that is their purogative....
For myself, I focus on my life and what I can do...I have enough stress in NON lYme areas of Life that I do not need to stress myself out with Lyme politics... I choose to just move on, and come here for info, and help my LLMD out as much as possible. But I personally draw a line to how much I want Lyme to effect my life.
There are many here that DO want to get involved and have made it quite clear that they are very willing to do what they can to help, and I am sure they will.
Posted by chainsaw joseph (Member # 6611) on :
We all have the right to do whatever we want to do but could you tell me why you wouldnt want to write a short letter to try to improve everyones situation.Im not asking anyone to run for president.I DO NOT mean this out of disrespect,I dont,but the time you just posted here you could possible made alot of folks lives easier,even yours.I didnt mean to pass judgement but situation for us just plain stinks so yes it eats me up that hardly anything about the meating was on here.Why will tyhese doctors speak up for us in the future if we cant even write a letter of support.Now if you cant get out of bed and your to sick to write,well of course nobody expects you to do anything but if you can write,for sake of others why wouldnt you want to support this issue.When there are so many suffering,dont you feel it is an obligation to at least write.There is a great injustice in lyme.Please dont take me the wrong way,just want to see a change.I dont want to insult anyone just want to see the ball rolling.
Posted by Mo (Member # 2863) on :
This is really important, one of the greatest opportunities we have had to move the cause.
Please do whatever you can. Go, write, write letters to your paper (in any state) commenting on this happening in MA, send the info to your e-mail address book..
Leave a flyer in your Doc's office, submit a bit about your experiences and effects of long term care ..accurate diagnosis, whatever.
This is a state by state battle, and Mass will have allot of influence and ripple effect. It's also Steereland.
Do whatever you can handle, the key is in numbers responding even if you can't go.
Mo
Posted by sizzled (Member # 1357) on :
Up!
Posted by Foggy (Member # 1584) on :
Yes, good point Chain. I must reiterate:
To those who attend: Please make it clear that it is a TRAVESTY that Boston, arguably the finest city in the country for medicine & research, is in the dark ages when it comes to Lyme & related vector borne illness research.
Boston/Ma is an endemic region. Why is there no dedicated Lyme & Vector borne illness research center at one of Ma's leading teaching hospitals?
This will be a HUGE eye opener to many in the state who think a simple dose of Doxy will do the trick.
[ 23. September 2005, 11:16 AM: Message edited by: Foggy ]
Posted by hatsnscarfs (Member # 6562) on :
I'll be at the hearing and will notify my local newspapers.
I live very nearby. Email me if you need help with directions or parking.
hats
Posted by livinlyme (Member # 3773) on :
Sorry even though I think Dr. J is super I am almost homeless at this point so I doubt making a 1,000 mile trip will help me support my family.. Send me a link to sign a petition I will gladly support the man! He helped me to get a test on my kids and sent the results to a closer LLMD to get them treated.. so I owe him something.. Linda D
Posted by sizzled (Member # 1357) on :
Understandable, if you cannot attend but perhaps you can write a short email?
No judgement call here.
Posted by Christine202 (Member # 6158) on :
I just write a lengthy email to [email protected] and it just got returned saying address was "unknown"
Can anyone help? Thanks
Posted by livinlyme (Member # 3773) on :
Try [email protected] I think AOL is case sensitive.. I cant swear on it but I just senta test email I will know in a few minutes.. someone has a lyme moment here it is not [email protected] but the reverse...
Posted by sizzled (Member # 1357) on :
OOPS! Posted by Christine202 (Member # 6158) on :
Thanks! Believe me I know the feeling....LOL Posted by tickedntx (Member # 5660) on :
up
Posted by lymebrat (Member # 3208) on :
Hey Joe,
I've been away for a wile as my little girl was diagnosed with Juvenile Diabetes and I simply haven't had time to be on the board.
But I am here now, and even though I can't make the meeting, I will send an email.
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Thanks, my dear!! ![[spinning smile]](graemlins/spinsmile.gif)
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