with what eric started above, pammie and i took his venture to www.mdjunction.com to their LYME site where they have 800 active members.
one of their members, BEAUTY, wrote her own touching story and it was sent on eric's thread he started to HER STATE/FEDERAL SENATORS/HOUSE REPS.
now another of their newer members sent her own letter to her state's legislature/congressional members.
DHARM got an email back asking her to CALL THEM and talk about her situation!! so she plans on calling monday so she and her mom can go to her senator's office to discuss!
also, her fiance is a DISTANT RELATIVE OF NJ FRANK PALLONE, so she is asking us to send our own letters regarding OUR LYME STORIES to her, so she and dear mom can take an entire box load of EMAILS/LETTERS FROM ALL OVER THE USA TO PALLONE! they plan a personal visit to him since they live in NEW JERSEY!!
you can read more about this on this link and it's DHARM79 who we are to email our letters to!! *********************************************
posted
The support group that I belong to is from NJ.
Early last spring a few of us made an appointment to speak to Congressman Pallone in regards the
importance of supporting Lyme patients by signing Bill HR741 at his New Brunswick, NJ office.
His representative listened to our personal stories, took the scientific articles we brought
and assured us that he would give them to Congressman Pallone.
There was no response from the Congressman.
That May a rally was held in front of Congressman Pallone's office in Long Branch to let him know
that his signature on Bill HR741 was desparately needed.
Again no response.
At a town meeting in his New Brunswick office a parent of a child with Lyme read him a beautiful
poem about life with Lyme Disease and asked him to support Lyme research by signing the Bill.
He told her he hadn't read the bill yet.
The very next person that went in to see him asked why he hasn't signed the bill.
He told her that the bill would let people take long term antibiotics and that would be harmful to them.
(Did he read the bill in the 10 seconds between the two people?)
At the next town meeting later that week in Holmdel, NJ I had my turn to ask why he refused
to sign the Bill and support the research and education that the bill would initiate.
When it was pointed out that there was no reference to any medication dose in the bill, he stated that he would read the bill again.
Later he stated in Congress that he will not support the Bill for Lyme disease because his doctor neighbors said that it was bad for people.
Perhaps all the past letter writing and calls to his office has worn Congressman Pallone down.
I hope so.
But maybe a copy of our letters should also go to the HMO's, pharmaceuticals, and health
professionals that donate to his campaign fund.
Sorry for being the "Debbie Downer".
Turtle
-------------------- Turtle 1653 Posts: 57 | From East Brunswick | Registered: Oct 2006
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bettyg
Unregistered
posted
turtle,
thank you for taking the time to write of YOUR personal experiences being a JERSEY VOTER!!
yes, it's disgusting that he never took time to read the bill or your letters, etc.
yes, i agree with you that perhaps he might be getting worn down after the DIRECT CONSULTATION of last day in congress in dec. before they adjourned.
you've got a good point there too about copying folks to those you mentioned, but do you have any idea how many hundreds/thousands that would be emailing/snail mailing them all!?
who knows unless you try right!
anyway, you were not a downer; just being realistic based upon YOUR/OTHER JERSEY folks' experiences. thanks for sharing!
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I recall that the IDSA met with Pallone around the time of the rally last year.
Since then, his responses indicate that he is not interested in passing the bill or even allowing it to be heard. Apparently he buys IDSA rhetoric.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
up for those wanting to write their stories NOW, since the maryland dr. has NOT BEEN CHARGED at this time.!
PLEASE use a former one, a letter you wrote to a family member, or insurance company and email to address i showed above for DHARMA79....
posted
must share this well-written letter from mdjunction lyme moderator, beauty....
Okay-- this whole "ticks don't cross state lines" thing has got me (and I know it's a bad pun, but)-- TICKED!! Why don't they get it??
I brought this up in my letter to Congress-- the one going to Pallone's office with Dharma-- going to share here.
Dear Congressman,
We need your help, Sir. We are calling on you to take time out of your busy schedule to listen to us. To set aside your current ideology that encompasses Lyme Disease, and allow us to enlighten you with our testimonials.
The pandemonium of Lyme Disease is obstinately real, and requires the government's immediate attention.
I have Chronic Lyme Disease, and I am writing to you to make a plea for myself and others who are needlessly suffering from it's affliction.
I live in Oregon where my doctor claims it does not exist, yet I am clearly suffering from it.
I suffer from stiff, painful joints and muscles that freeze up on me; cracking, crunching joints especially in my neck and knees; burning bone sensations in my arms, legs, hands, feet, and spine.
I get electrical pulses that feel like I'm hot-wired. I experience muscle & nerve twitching, eye floaters that increase to the point it appears like having mosquitos swarming in my line of sight; numbness & tingling in my hands,
fingers, feet & toes; intense brain pressure due to inflammation; disabling ocular migrains; tinitus, buzzing, crackling, pain & sound hypersensitivity in my left ear; and swollen glands and lymph nodes.
My ribs feel bruised all the time. My heels feel as though they are fractured and there are days I can barely walk. I have issues with my equaliberium, I get off-balance & dizzy.
I have severely alterd and poor memory function, both long and short. I can often know exactly what I want to say but cannot seem to get my words to correlate correctly with my brain unless I take an extended length of time and put it on paper.
I experience both severe insomnia and bordeline Narcolepsy. I often use furniture to get around the house, and I have a cane & a motor scooter for the really bad days.
There are days I do not have the strength to hold my arms up to wash my hair in the shower. I am only 34 years old, and am virtually trapped inside an 84 year old's body.
I have been in debilitating states of health off and on, more on than off, for many years. Two years ago, they tested me for Mono, Lupus, MS & RA, and they all came back negative so I was diagnosed with what they called "severe" Fibromyalgia.
There is medical research that supports the possibility that Fibromyalgia and CFS of Type 1 etiology will have been activated by borellia burgdorferi (Lyme) or a sub strain or a mycoplasmal infection, or ehrlichiosis, babesiosis or a host of other infectious agents.
In addition, I have at least 80% of all the symptoms associated to Lyme, including pictoral proof that I had the EM rash, a bull's eye, and I still cannot get treated for Lyme Disease.
I meet the CDC guidelines for a clinical diagnosis of Lyme yet my doctor blatantly turned me away.
What is healthcare coming to, if you cannot receive care even when you meet guidelines that indicate for which treatment should be administered?
The guidelines, by which Lyme and it's course of treatment are determined, are severely inadequate so if I cannot come by appropriate healthcare management, what does that say for all the people who fall short of those guidelines?
I am not naive on this subject. My doctor is.
The IDSA is, and although I mean no disrespect, apparently many key people within our government are as well. And, from what I have read, this unfortunately includes you, too, Congressman.
Did you know, Sir, that although the IDSA claims that Chronic Lyme does not exist, and that Lyme Disease is capable of being cured, a person who is afflicted with Chronic Lyme Disease cannot, and will not, be accepted as a blood or organ donor, to receive life insurance, or to serve in our military?
Why, Congressman, if Chronic Lyme does not exist, do these organizations have strict policies in place that stipulate against accepting, or providing, service from people who have "Chronic Lyme Disease"?
There is medical documentation showing Lyme is in fact in every state yet hundreds of thousands of people continue to suffer across this country.
Lyme Disease has become a running joke because of the shortcomings in proper education and the inadequate guidelines that are supposed to be in place to protect us.
We are told, in every state, to protect our dogs not just from fleas, but from ticks because of Lyme Disease.
We are told what precautions to take when we're outdoors because of ticks who carry Lyme Disease, yet if we, ourselves, present with a tick-bite, a rash or symptoms of Lyme, we are scoffed and turned away. We're told it's 'all in our heads', and that Lyme does not exist in our topographical area.
Sir, please tell me, can not an infected tick attach to a migrating bird, be carried across the country, and at any random point along the way, fall off into a new geographical location?
Is it not true that a single, female tick can produce between 1,000-6,000 eggs during her lifespan?
A tick's lifespan averages anywhere from less than a year to two years, and if that tick is infected with Lyme Disease, the probability of her offspring being infected is vast.
Now imagine if even half of those reproduce, and so on and so on.
Does it not make sense then, that in a very short amount of time, this could cause a massive spread of this disease to all other areas?
This disease has quickly gone from being an epidemic along the east coast to a pandemic, not just country-wide, but global.
There are hundreds of strains worldwide, and while infectious disease panels argue over who's right or wrong, people continue to suffer.
The National Insitute of Health's research supports evidence that Lyme Disease is also spread by other vectors such as mites, mosquitos and biting flies.
They also support that Lyme Disease is spreading across the country, and that everyone is at risk.
Does it not make sense that if the majority of our healthcare professionals are ignorant to these facts, that they are inadvertently going to continue to turn people away, assuming Lyme does not cross state lines, and remains confined to the east coast?
And what of all the people suffering so close to what is considered 'Ground Zero' for Lyme Disease?
If they cannot get the attention & treatment this disease demands, what does that say for the rest of us across the country who live in areas where medical society continues to turn a blind eye?
Our lyme bills have been going stale in Congress for years. Why do you continue to ignore this??
Sincerely,
Tahnee H*******
[address withheld for the public forum, but was included in the letter ]
I am so sick of the ignorance!! Sorry, had to vent-- (((BIG HUGS)))
Post edited by: beauty4ashes, at: 02/04/2009 15:59
Lyme Group Leader-- Personal Disclaimer: www.mdjunction.com lyme moderator
wasn't that wonderful hitting it on the nail all the way thru!!
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bettyg
Unregistered
posted
up for reminder to write your letters and send to dharma, who will deliver your letters personally to PALLONE IN FUTURE. betty
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