posted
Do you know any more about details? Can anyone just show up and testify? Wow...what an opportunity! Thanks for alerting us!
Posts: 307 | From Byfield, MA | Registered: Jan 2004
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posted
Just saw that there is quite a bit of information about the hearings on General Support. Sounds like a wonderful opportunity for us!
Posts: 307 | From Byfield, MA | Registered: Jan 2004
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The Joint Massachusetts Legislative Committee on Public Health has announced that there will be a Public Hearing on Lyme Disease beginning 10:00 am, Wednesday, October 12th in Hearing Room A-1 at the Massachusetts State House, Beacon Hill, Boston.
The program will begin with testimony from an expert panel consisting of:
* Brian Fallon, MD, MPH Columbia University College of Physicians and Surgeons; Director, Lyme Disease Research Program, NY State Psychiatric Institute; Principle Investigator for N.I.H. Chronic Lyme Retreatment Study
* Daniel Cameron, MD, MPH Principle Investigator,N.I.H. Lyme Double-Blind Randomized Placebo-Controlled Study; Board of Directors, ILADS; Private Practice, Mt. Kisco, New York
* Charles Ray Jones MD Private Practice: Pediatric and Adolescent Lyme Disease, New Haven Connecticut
* Patricia V. Smith President, (national) Lyme Disease Association, Inc.; Vice President, Political Affairs, ILADS (International Lyme & Associated Diseases Society)
The general public will then be invited to testify. Lyme patients from everywhere are welcome; however, Massachusetts residents will be given preference regarding testimony. Although legislators have asked the public to testify ``from the heart,'' written notes and/or cards will be permitted. Time will be limited to 5 minutes (IMPORTANT, one to two typed pages is about 5 speaking minutes; there is, however, no limit to the written testimony that you may choose to submit to the Public Health Committee). Bring your written testimony to the hearing, and please forward a copy of your statement by October 1 to:
A Large Turnout is as important as the quality and quantity of Personal Testimonies. Please bring your children, spouses and other family members. Drs. Jones, Fallon & Cameron and Pat Smith are all traveling a long distance and sacrificing much to help us make this into a successful event. This is THE opportunity that we have been waiting years for! The Massachusetts Legislature has never, EVER held hearings on Lyme disease at the State House in the past; let's not be faint of heart but, rather, let's all 'seize this moment!' with our cogent and coherent testimonies and our OVERWHELMING attendance! We have, at this event, the opportunity to begin changing conditions for Lyme patients here in Massachusetts and nationwide.
I hope to see you ALL at 10 AM sharp on Wednesday October 12th at the Massachusetts State House (Hearing Room A-1)! Note: For those coming in private cars, parking is underground about 1/4 mile away. Allow extra time)
Sincerely,
John Coughlan Director Massachusetts Lyme Disease Coalition Ph: (508) 563-7033
*NOTE: there is a possibility that a physician from the Steere/Klempner group may be added to the program.
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Posts: 819 | From New York, NY | Registered: Oct 2001
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
As I'm all booked to fly from the UK to New York next week to see my LLMD, I am not going to be able to make it as I'll have to return here before the 12th (can't afford two trips)...sadly.
But, I'm behind all of you who can make it!
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
up
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Anybody have more info on what the goal of hearing is? Did the Lyme community push for it? If so, what message are they trying to send? Is there specific legislation that they are trying to pass?
I already emailed the MA Lyme Coalition but didn't get a response. I know a state senator on that committee and would like to discuss this personally with him prior to the hearing, because I am out of state and can't attend.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Those who can't attend - WRITE LETTERS via email or snail mail!
The general public will then be invited to testify. Lyme patients from everywhere are welcome; however, Massachusetts residents will be given preference regarding testimony. Although legislators have asked the public to testify ``from the heart,'' written notes and/or cards will be permitted. Time will be limited to 5 minutes (IMPORTANT, one to two typed pages is about 5 speaking minutes; there is, however, no limit to the written testimony that you may choose to submit to the Public Health Committee). Bring your written testimony to the hearing, and please forward a copy of your statement by October 1 to:
E-Mail: [email protected] FAX: (508) 563-7780 Snail-Mail: Massachusetts Lyme Disease Coalition P.O. Box 1916 Mashpee, MA 02649
Posts: 1485 | From USA | Registered: Apr 2004
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posted
If we can't make it, can we fax or email our stories (short version) and you can give copies of these to the legislators there? That's something most of us could manage. What should we emphasize?
tj
-------------------- tj Posts: 296 | From Portland, OR | Registered: Jun 2003
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posted
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!
This is where the message said to send your testimonies!
E-Mail: [email protected] FAX: (508) 563-7780 Snail-Mail: Massachusetts Lyme Disease Coalition P.O. Box 1916 Mashpee, MA 02649
Posts: 441 | From USA | Registered: Jul 2004
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posted
I would like to go (Im in PA) .... What do I write? A short version about how lyme has totally wreaked havoc on my life and 2 childrens lives? How I spent 2 years looking for help? I don't think there IS a short version but I will try.
We are supposed to send a copy of our story first by OCT. 1st? pattiecake
Posts: 687 | From PA | Registered: Oct 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
9/21/05
To whom it may concern:
I'm writing to have my story submitted for review at the public Lyme Disease hearing on October 12th in Hearing Room A-1 at the Massachusetts State House, Beacon Hill, Boston. I have had Lyme Disease for 7 years and have finally been properly diagnosed January of this year. I've been from doctor to doctor trying to find out what was making me so sick. I was tested for Lyme amongst other things and always came back negative. The Lyme tests are not accurate and not acceptable for diagnosing someone with Lyme. I have found out that to my dismay that the public knows very little about Lyme desease. I didn't know until just recently. Finally a friend told me she thought I had Lyme and sent me to a Doctor who knows how to treat Lyme and other tick born deseases. I tested positive with two specialty labs. The Doctor I go to doesn't take insurance due to the fact that he treats aggressively for success in conquering this horrible debilitating disease. Insurance companies don't "allow" Doctors to treat aggressively with out persecution or scrutiny. My insurance company should not dictate my health. They are not doctors. Allot of the literature available from my insurance company on Lyme is outdated. On their audio directory they talk about the lyme vaccine "Lymrix" which has been off the market for many years. It is really pathetic and unsafe how much control the insurance industry has.
Thanks so much, Heather xxxx xxxxxxxxx Aberdeen, NJ 07747 732.000.0000
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
pattiecake, yes, write your story! I'm going to write my testimony and I'm going to include photos of my two little ones with Lyme because it's too much for me to drag them there and it'll be too much on them. I'm planning on being there in person.
Send it here: E-Mail: [email protected] FAX: (508) 563-7780 Snail-Mail: Massachusetts Lyme Disease Coalition P.O. Box 1916 Mashpee, MA 02649
Posts: 441 | From USA | Registered: Jul 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
What is the goal of the hearing?
If people are asked to write letters, we need to know why the hearing is being held and what the goal of the hearing is.
Are we supposed to write about the difficulty of diagnosis? Of treatment? The benefits of treatment? Our symptoms?
From past experience, if it is not clear what the message should be, then the testimony won't fit the message and the legislators will leave the hearing misunderstanding the issue. Please tell us what we are supposed to talk about!
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
Write why long-term antibiotic therapy has helped you.
Better yet....come and show your face!
Posts: 4258 | From over there | Registered: Jul 2001
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
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?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I plan to be there (and have forwarded my testimony to MassLyme).
It will be the third anniversary of what should have been my due date with our third child whom I lost when I was four months pregnant...now knowing with almost certainty that is was because of my misdiagnosed Lyme.
I am very excited about this opportunity!
Julie
Posts: 307 | From Byfield, MA | Registered: Jan 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Emailed my letter
But haven't gotten a response back
Posts: 1485 | From USA | Registered: Apr 2004
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posted
Maybe we should bring a pair of shoes for each person who couldn't attend and line them all up so people can fathum the numbers of us. That is what they with Aids patients!
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
willing to bring people! Let me know if you need a ride!!!
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
UP
Chill Chainsaw,,,lot's of us will probably email and not let you know...
Good that you may have woke some folks up however a more pleasant post may have done the same......
more flies with sugar kinda thing....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
Sorry Tony ,the mass hearing thing was there for days and very few responded,in fact I brought it back from page 4. I kept waiting for a huge response for days but nothing.It finally ate me up and I got up the nerve to post.Hey man Im happy to be the one to kick,as long as we team up,hope your well dude.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
Since I'm not in MA, I have no idea who the newspapers are out there
So if anyone knows the names of the newspapers (or can post email addresses for the newspapers) I'd be glad (and I'm sure others will also) to send in a letter to however many end up being listed
Posts: 1485 | From USA | Registered: Apr 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
up
Posts: 1485 | From USA | Registered: Apr 2004
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-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
I've e-mailed the WI. group to send in testimonial's.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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lymeloco
Unregistered
posted
Joe, I do want to go. I am trying to find somebody to take me. Do I have a car? Yes. Is my mind competent enough to drive on a highway? No.
Will I write a letter? My head is so screwed up, that I'm going to have to have somebody put it in context for me. I have trouble with writing what I'm writing now!
I have been through and still going through a lot like the rest of you!
If I'm fortunate enough to get somebody to take me, they'll have to speak for me.
Do I blame you for getting upset? No, but I do believe there will be more people from Ma. than you know.
Don't forget, pretty much of Ipswich, Ma. is infected! There has been news left and right over the spring and summer. One was a two whole page spread in the Globe about two families suffering with this sucky disease.
As far as writing the newspaper, do we need permission from our llmd's? I wouldn't want them to get in trouble for this.
Should we get permission? I may be from Ma. but reactions from this area, people think I'm nuts! You know, take antibiotics for four weeks and your cured!
I'm also pissed that the school departments are not having any type of workshops on this disease. In my 17 yrs. as an asst. I've seen children that make me wonder whether they have it themselves! Unfortunately, children can't explain their feelings like adults!
You all know that nobody wants to hear about this! My mission is to try and get some type of education in our schools here, but it will have to be through one of my friends who works with behavorial and special needs do it for me.
In fact, she's the same person that got me to see an llmd. I told her I didn't have lyme. She said it wouldn't hurt to find out.
Test after test over all these years, two lyme tests neg.. Who would've thought lyme? Her brother has it, but so far as of right now he's been doing great!
When I did get diagnosed, the doctors in this area are still not buying long term antibiotics! I'm fortunate right now that I don't need referrals.
I had to take early retirement. Do you realize that there is no disability when you work for a city? I am fortunate enough to have the city paying 75% of my ins. but it's more than what my retirement check is.
I don't want you guys to read my tone like I'm upset with any of you. I'm not, I want to go too!
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posted
As with other struggles, silence is deadly.
Legislators have a lot on their minds these days. The Lyme problem is unlikely to fix itself without sustained effort on our part. We need to send a clear message to MASS about what has gone wrong and what has helped.
Let's pounce while we have a chance!
Please write to the legislators, attend the hearings if possible, and spread the word.
If long-term antibiotics have helped you, please let these lawmakers know.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
To the top of the page for more readers to see.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Lyddie
Unregistered
posted
To members of the legislature:
Our family, like many others, has suffered tremendously from Lyme Disease. Yet we are among the lucky ones who were diagnosed properly (though at the chronic stage of the disease) because we had enough information to pursue proper testing and proper evaluation of those tests.
Options for Lyme patients are extremely limited: we know of only one physician in Massachusetts who is recommended as truly knowledgable, by the Lyme Disease Foundation. In addition, when we have responsibly pursued "differential diagnoses," meaning we have gone to other doctors, at the request of our family doctor, to make sure that there isn't something else going on, we have often faced ridicule and abuse. Parents are even vulnerable to suspicion when they bring children with so many different symptoms, to doctors who are overwhelmed by such a complex picture.
The problems with Lyme testing are little known by the public. The Elisa test has a high false negative rate. The Western Blot is done differently at different labs, and is interpreted differently by doctors. The CDC criteria were originally epidemiological, not clinical. These testing uncertainties are a nightmare for patients.
I sent away for lab kits from labs that are good with Lyme tests, with the blessing of our doctor, who arranged for the blood to be drawn. It should be noted that, paradoxically, the healthiest member of our family tested the most positive, and the sickest the least, probably due to immune problems. I myself converted to highly positive AFTER weeks of antibiotics, and was positive at that point no matter what lab tested me or which doctor saw the tests. Yet I had received a postcard prior to the antibiotics, telling me I did not have Lyme! Clearly more research is needed on testing for Lyme.
The standard 30 day treatment does not address disseminated Lyme disease. One of our daughters got better after 30 days, but immediately relapsed. We then did three more months, and she got better. Our other daughter needed almost two years, off and on.
I have probably had Lyme for years and years (and may have even given it to my kids), and have been on antibiotics for 5 years now. I originally improved in the first 6 months of treatment, and do fine on the medications, but if I stop them, within two days I am very sick. This is a mysterious situation suffered by many. There are possible explanations for this, including the possibilty that the meds drive the bacteria into "cyst form," and the bacteria convert back to spirochete form once the meds are stopped, and are once again capable of lots of trouble-making. Clearly more research is needed on the Bb organism and on medications to eradicate it.
One of our children, who also has type 1 diabetes (making any infection that much harder) has had her entire adolescence, perhaps her childhood as well, impacted by Lyme. She has had asthma and frequent pneumonias, sinus problems, migraines starting at age 5, knee and ankle problems requiring surgery, the loss of the use of her right wrist, a 3 month psychosis on tetracycline, complex partial seizures, a horrendous daily headache for two years, low thryoid, dizziness, fatigue and fast heartbeat. She missed months of school for several years.
She is an amazing person through these challenges, but I wish she didn't have to be quite so amazing.
Many people who think they have chronic fatigue, fibromyalgia, or lupus, actually have Lyme. They have been told that they don't, because their Elisa was negative. One woman recently told me that she had a daughter who had spent 5 years of her adolescence in bed. They belonged to a huge chronic fatigue support group for kids and parents. Last year, these kids were all tested properly for Lyme, and all but two were positive.
We are moderates in the Lyme wars. We believe that thorough differential diagnoses should be done so that we don't say "everything is Lyme." We also have a very healthy respect for side-effects of antibiotics and other drugs used- but, these medications are absolutely necessary, and may even be life-saving.
We are also moderate in that our family uses a Lyme physician within the insurance system, because we cannot afford traveling out-of-state, paying out of pocket for appointments and tests- although we have done consultations elsewhere. We would like more choices that are possible financially for people with Lyme.
We would like to see more funds for research. It is possible that certain people with certain genetic traits are more susceptible to problems with Lyme, through autoimmune problems triggered by the Lyme, for instance. Why do some people get so sick while others don't, and why do some people respond to the meds while others don't? Current medical opinion seems to exclude those of us who don't fit their model, so perhaps the model needs to be changed.
Finally, there is a nastiness that we have experienced in regard to these controversies that is very troubling. All patients deserve compassion, courtesy and respect from physicians to whom they turn for help. The treatment of Lyme patients by the medical establishment greatly increases the suffering involved with this disease.
posted
Thanks to everyone who is moving this effort along!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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lymeloco
Unregistered
posted
Excellent letter Lyddie! You articulated it very well, and you put all the important things that need to be stated.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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lymeloco
Unregistered
posted
Henson, I didn't address mine. Just wrote my testimony, and e-mailed it to Mass.lyme. I know what you mean about lyme brain.
I wonder how many people this room can accommodate?
I really do believe there will be an excellent turn out though! I'm still hoping I can make it!
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-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
This is one of those times when Lyme patients need to make special effort to focus, focus, focus.
The hearing in Boston could well have a major influence on our ability to receive adequate treatment in the future.
Please be there if you possibly can!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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bettyg
Unregistered
posted
Finally got my 1 page written testimoney emailed to Mass. better late than never.
Best wishes to ALL good there; CAN'T WAIT TO HEAR YOUR PERSONAL COMMENTS.
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