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» LymeNet Flash » Questions and Discussion » Medical Questions » lyme nets response to Mass lyme hearing so far

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Author Topic: lyme nets response to Mass lyme hearing so far
chainsaw joseph
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Just trying to get an idea how much of an impact we are making.If you wrote a letter or wrote to the newspapers,or are going to Boston or sending a representative for you,could you please sign in. I will start,I wrote a letter to Masslyme(I wish they would let us know how many letters they have recieved).Ialso wrote to the new bedford standard times,the fallriver herald and the providence journal but havent heard from any of them.I hope to go to Boston if Im well enough.
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krazykt1
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Wrote a letter to masslyme and sent copies of correspondance from CMA. I am in Canada but I figure it all helps..
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SunRa
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writing testimony to MassLyme, contacted local papers, and if I'm having a better day & a friend can drive me, then I will be there!(unfortunately due to my head sx, theres no way I'd be able to stay very long or I would take the bus being offered)
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Lyddie
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I am just checking in about the hearing. I am going with two of my children. I sent written testimony to MassLyme, and sent a copy of it to our local senator, with whom I am acquainted. I also sent notices to about 20 local or area newspapers. As far as I know, quite a few people are going.
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giftoflife
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Chainsaw,
I will be attending and speaking at the hearing. I
hope to bring tears to the legislators eyes as I tell them my story about my 13 year old son. There is bus leaving from Western Mass. early that day. If anyone would like to get on it please contact me.
giftoflife

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dontlikeliver
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Nearly finished writing testimony for email..if I win the lottery I will be there in person.

DLL

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bpeck
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I originally wanted to attend, and to speak, but was told they couldn't guarantee me the speaking time as they're taking Mass. residents first, which I totally understand.

So - I sent my Testimony.

I hope there is a really big turn out. How could there not be when Martha's Vinyard is the Lyme capitol of the USA?

Barb

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lou
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Sent testimony to masslyme yesterday. Am a little confused as to whether this should be going also to the hearing officials. If so, this address was not in the original info, or did I overlook it. Anyone know?

Hope someone has put the info in Martha's Vineyard and Nantucket newspapers.

Thanks Joe for trying to stir folks up. I know you mean well and were frustrated at the apparent lack of interest. Hope there is a big turnout. Look at what they did in CA....maybe there is hope for MA.

[ 27. September 2005, 11:08 AM: Message edited by: lou ]

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Michelle M
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Well, call me a slacker. Be "disappointed" in me. I haven't done it.

I get up at 5:00 a.m. every day, feed horses, dogs, cats, cook breakfast for my child, take her to school, and drive 26 miles to work a full-time stressful job all day. I take Provigil to keep from falling asleep while working or driving home.

After work, I pick up my child, and either take her to soccer, or run errands, or recently -- drive to my mother's, who had surgery a couple weeks ago for colon cancer. She lives alone and I cook her meals and run her errands and take her to the doctor.

If I'm home by 7:00, that's good. If I get dinner cooked, homework checked, dishes done, house tidied, and get my own child tucked in by 9:30 or so, that's good.

I have been in treatment for neuroborreliosis since June and there are many times when I could barely work and knew it. But as a single parent, it was impossible.

When I had a vacation a couple months ago I spent a couple days doing an article for our local paper on Lyme disease which appeared as an unedited two part series. I've also educated our local Health Department and my flyfishing club.

I guess what I'm trying to say is while I can appreciate your zeal, I didn't much care for the berating tone of your last post, and this post leaves me with the feeling that if a sufficient number of people don't "sign up," your wrath might be loosed again.

Each of us does what we can, when we can. I do not believe we should be called upon to "prove it" -- to you or anyone else.

Maybe you have a lot more free time than I do.

Michelle

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lymeloco
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Has all the support groups from every state been notified?

Has anyone written The Cape Cod Times? Vineyard Gazette? Boston Globe? The Boston Herald? Falmouth Times?

For those that have the intellect, which I see quite a lot of people have on here, maybe there should be one spokesperson for this!

Would these articles go in the opinion pages?

Has fliers gone out to people explaining what's going on?

Are the doctors involved? Did they say it was o.k.?


Voice of the public? What if people aren't having trouble with treatment?

Boston Medical does have a lyme research dept..
Not all doctors in Ma. our against us, only the ones that our making life harder for all of us!
You know who they are!!!!

Think about it! Everything I suffered with before, and I'm going back to childhood on, all the tests, and minor surgeries for nothing!

Kidneys, bladder,female problems, upper G.I., lower G.I., TMJ, severe ear pain, numbness, balance, shakes, speech, word retrieval, stuttering, depression, body jerks, swallowing difficulties, yeast constantly, feeling like bugs biting, fears, worry, anxiety, and the list goes on!

I know I haven't hit on all of them yet, but since antibiotic treatment, most but not all have gone, and the ones that do come on, are far and fewer than before!

I am still trying to find a way to go. I might even ask my daughter if she could take time out of work. She's a nurse manager, and I don't think that's the easiest job to take time from!

Boy, I'm on a roll! Why weren't we notified by our doctors?
Where did this info. come from originally?

Sorry guys but that felt good! Any feedback???

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lymie tony z
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Yes Chainsaw,
As I wrote in your initial inquiry, I have sent an Email.

It's amazing that it took less time to send an email than it took to read someones excuse not to send and email...

Or is that too painfully obvious..... [Roll Eyes]
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

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chainsaw joseph
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Michelle,sorry you feel that way about me.My wrath is at the way lyme is treated(doctors,government,insurance,CDC),my wrath is not against anyone here.After the struggles we all have for being believed and trying to get treatment yes I was dissapointed that there wasnt any visible response to this oppurtunity.Hope you belive me when I say Im just trying to help,I aint perferct,peace.
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HEATHERKISS
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sent email testimonial

--------------------
HEATHER

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riversinger
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quote:
Originally posted by lou:
Look at what they did in CA....maybe there is hope for MA.

Yep! Look at what we just got passed in CA! A bill protecting our physician's. This is a year and a half after a similar senate hearing in CA, at which many patients spoke. BTW, Michelle is from CA. We are working hard out here!

I can understand why you want lots of participation, but your best bet is getting MA residents involved. They are the local voters, and will have the most clout. After that, local states.

I'm sure it will help to get letters from us, but not nearly as much. We are just too distant to threaten your legislators in any way, politically, financially, etc. But I wish you many, many responses, and even better, a positive effect from it all!

--------------------
Sonoma County Lyme Support
[email protected]

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JillF
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Sent email

Sent email to the newspapers listed in other post

If anyone has additional email address of websites of newspapers, please post and i will send emails to them also

Dont' have time to be looking into it myself. My son has been extremely sick for the past 2 days

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Linda LD
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I sent an email and am trying to get someone in my support group to go--I have little kids and can't go...

Linda

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chainsaw joseph
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I e-mail the taunton gazette and 2 marthas vineyard papers and also nantucket.Thats 6 papers Ive contacted and havent heard from any of them yet.
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Julie-MA
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I sent my testimony about my five year old and me to MassLyme. (My understanding is that they will be certain the proper people at the State House receive all the testimonies.) My local senator received it last spring. I plan to be there, though I do not think I will try to get my five year old to attend, just too long a day.

Julie

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daniella
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I will be there!!!


daniella [Cool]

--------------------
~Things may happen in my life time to change who I am but I refuse to let them reduce me...~

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lymeloco
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Would somebody tell me who to address this hearing to in Boston?

Do we state that even though we might not be able to attend that I would like to send my testimony anyway?

I have written all my e-mail contacts...many whom are educators, family and friends.

I also forwarded the news about the upcoming hearing.

I'm just not sure how to start the letter. I do have a fax, so I could still get it in on time.

Trust me, I do want to help in any way I can.
If I do go, not sure if I'll be able to speak.

The words may not come out, I might start stuttering or totally forget what the hell I just said. I also tend to shake under pressure.
Neve know when it's going to hit!

I just don't want to look like a jerk!

Thanks for those of you who can help me.

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chainsaw joseph
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I sent my letter to masslyme,hope they are taking it from there.I couldnt speak either,everything you said and more.Still havent neard from the 6 papers ive e-mailed but that doesnt mean anything.
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Christine202
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I wrote to MASSLYME last week...

I want to attend the Boston Meeting but I will be at my LLMD for an appt ( ironically) that day.

Anyway I'm glad that I ended up putting my "say" in this conference by writting.

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lymeloco
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Thanks Guys!!
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lymeloco
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Joe, I've written my letter, but have to wait to fax it because I only have colored paper.

Just talked to s/o and he's going to buy white paper on his way home from work.

I will fax it as soon I get the white paper.
I read my letter to my s/o over the phone, and he said it's sounds good.

Do I need a cover letter for this? What do I put if I do?

Thanks everyone, together we will win this fight!

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nan
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A big thank you to all of you! Joe...you are doing a great job of motivating the troops.

We have been assured that all letters will be read by the Health Committee.

Letters may be addressed to: Joint Masachusetts Legislative Health Committee; Massachusetts State House;Beacon Hill, Boston.

Then submit to [email protected]

You are all wonderful....thanks so much!

[Big Grin] nan

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nan

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imanurse
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I have not responded. My eyes are so puffy from crying all day and I can't think straight so someone can write in for me.

I can't even advocate successfully for my own daughter to get a da## 504 so how could I be successful at anything else???

The law does nothing for me here. No protection whatsoever. Schools do not believe in accommodations for those with disability here at our school.

--------------------
**Eat Chocolate**

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nan
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There are quite a few mothers and fathers complaining about the fact that their children are refused for 504 plans. THIS is against the law!!!!!

Call any CORD office and they will tell you.
Your complaint, Nurse, is one heard a LOT and I intend to use it in my testimony as will others!

Your frustration is shared by many. Hard enough for adults to deal with this. Many can't work.
But kids are expected to go to school every day and stay out of the nurse's office, and parents are told, "He looks fine...we think he's trying to get out of the work"...I was a teacher for 23 years and I find the attitude toward these kids from the schools abominable.

So glad you will go and tell your story.
No child left behind is a joke!

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nan

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Lymeblue
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I'm going too
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hatsnscarfs
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I'm working on my testimony now. I'm unclear whether I send it just to Masslyme or whether I'm supposed to send it to the State House too.

Hope to see lots of you there. I'll be wearing my signature hat & scarf so stop by and say hi.

hatsnscarves

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nan
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Hatsnscarves...

Just send it to [email protected]
John will make sure that all letters will be turned over to the committee.

Thanks. nan:)

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nan

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ArtistDi
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Hi. I emailed my story and heard back from the
representative. At this point in my treatment,
I am unable to attend in person.

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lymeloco
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I ended up e-mailing mine because the fax wouldn't go through. It just kept ringing and ringing.

I hope I did it right. Oh well if not, more testimony for them to understand our lyme brains!

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FightFireWithWater
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Glad you found a way to get your message in, Loco.

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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!

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DJP
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I'll be at the hearing. Haven't written any thing yet, but will try to contact papers and TV stations.
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henson2
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HI,

I just sent in my testimony to MassLyme email address.

OK, to be clear: sending it to MassLyme means that this is sufficient, John will make sure they get these testimonies?

Are we supposed to send hard copies somewhere?

I was able to make the case that because of the university I attend, I was given immediate access to the major Boston hospitals, renowned nationally, and that even the caring and concerned specialists I saw there did not know what to do with me. I did not name any names nor make it at all hostile. (I did not see any of the big players so they won't be offended).

I also told how my positive Elisa was deemed a false positive bec. my PCP didn't know better. And how twice I was given the short courses of abx and when they didn't cure me, the doctors decided I couldn't have Lyme.

Then how finding the right LLMD and correct dx in the 6th year of illness gave me hope. And how long term abx caused improvement. But that the disease is so entrenched now that my future is really uncertain. How devastating it has been for 11 years etc etc.

I'm doing too quick a summary here to do it justice - I put a lot in and used my "how to write an argumentative essay" skills.

My question is, who gets chosen to get up and speak? Do we raise hands? Do they call names?

I am coming and hopefully bringing my mom. I hope I get to meet a bunch of you. [Smile]

I just wasn't sure if I should be practicing my oral delivery. LOL.

Anyone? How do we know if we get to speak? Who decides, or do they choose hands raised? It would help me to know so I can rest up for a few days beforehand, too.

Off to crash after this major effort. It's hard... they should know how bad we feel while we're still trying to do this advocating!!

Feeling very Lymied out and in need of hugs from fellow understanding Lymies. I always find it so hard to write my story. It's a painful one.

Am I going to go and end up crying? Sometimes this disease really hurts --- I mean the times you can't distract yourself from your life now.

Sorry, didn't mean to whine.

Love and hugs

Thank you to everyone who wrote!!

Tomorrow I will contact the "report a news story" at our local TV stations and even national news.... they have links for news tips. We should get the press there!!!!

((((Hugs))))

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hatsnscarfs
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I just sent my testimony to MassLyme too. I'm wondering the same things Henson is.

hats

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Lymeblue
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See you there Henson2 I'll arrive the day before the hearing.I' would like to hang with lymies too!!!
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chroniccosmic
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Sent mine today, a bit late but hope they can add it to the stack. You go lymies to all who are making the trip! [bonk]
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FightFireWithWater
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Up, once again!

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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!

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FightFireWithWater
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We're getting down to the wire, folks.

Please represent your own health interests by attending the hearings on October 12 in Boston!

--------------------
"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!

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FightFireWithWater
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The time is here, folks. The highly important hearings in Boston are being held this Wednesday, Oct 12. Again, it is in your personal interest to be there! This is a very special opportunity to get things changed for the better.

[ 10. October 2005, 11:51 PM: Message edited by: FightFireWithWater ]

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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!

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