Topic: spoke to Pres. Candidate Sen. Chris Dodd about Dr. Jones, Conn. kids llmd/lyme bill!
bettyg
Unregistered
posted
today, CONN. SEN. CHRIS DODD, FOR PRESIDENT, was in ames and talked at our youth & services building with attendance of 50-75.
he talked about the YOUTH things he has worked on in his life, and how much it meant to him, etc.
when Q/A started, i RAISED MY HAND PROMPTLY and chris acknowledged me again as he did in boone this summer. i identified myself from ames, and that i have chronic lyme disease. i said we've been discussing children, and i want to update you on what happened in hartford, conn. yesterday to our kids LLMD, DR. CHARLES JONES.
i told all the outcomes; how these 2 years of hearings have cost around $1 million out of pocket that we lyme patients have raised to defend dr. jones.
i told chris that he needs to talk about also the LYME DISEASE SENATE BILL HE WROTE AND SPONSORED! he needs to talk about it her/other states since all states are affected. told chris earlier to tell the audience about the lyme disease bill that he wrote, "you're doing a good job, don't stop now!" lol :kiss
kidded him earlier during a photo shot that his barbersop tv ads have been cute and effective; which they have been. he explained how he got involved in the lyme disease bill since he lived in the next town by LYME, CONN. he explained how drs. were diagnosing us psychological; it's all in your head. heard the audience gasping here and there.
i spoke up again saying that hillary and obama have both signed up on CO-SPONSORS of senate bill.
i said NO REPUBLICAN pres. CANDIDATE has signed on as co-sponsor on either SENATE OR HOUSE bills as i looked last week when pineapple updated the list of signers.
then i finished by again thanking him for writing and SPONSORING THE SENATE LYME DISEASE BILL on behalf of over a million lyme patients nationwide! then they went onto someone else.
later, i got a good hug from chris! my 1st!
FIREFIGHTERS OF USA have signed on with him. they have a huge yellow bus w/DODD on it. i met a group of FF from state of WASHINGTON who are here for 2-4 days to blitz iowa's 99 counts,
also some woman was taping the entire show. asked her later who she was, from IOWA PRESS RADIO that is an off-spring of WOI RADIO, 640 AM and i can't remember FM no. i don't listen to them. perhaps www.woiradio.com
i'm not sure. they would broadcast it later on am and fm but there was NO TIME TABLE since we have SO MANY full-time running candidates all over iowa!
friday night going to hear nm gov. bill richardson speak. -----------------
ONE BRIEF POLITICAL ACTIVISM COMMENT FROM ME! ********************************************
for those in NEW HAMPSHIRE AND SOUTH CAROLINA and then the following states in order of voting for candidates,
please attend as many meetings as you can where you see CHRIS DODD coming to your city and VOTE for him to run for PRESIDENT!
voice your concerns on how he standing up and leading the country in our fight for LYME RESEARCH, etc. tell chris "the navy floppy hat lady told us to come here"!
HE'S OUR LYME DISEASE BILL LEADER! let's do all we can to help get him elected, and he'll make sure kids' LLMD LIKE DR. JONES are protected since he knows the background of meeting with all those lyme, conn. MOMS w/lyme children!!
firefighters told me we need to get him as no. 4 of votes gotten from our caucus.
right now, it's OBAMA, CLINTON, EDWARDS, RICHARDSON..i think;
DODD IS ONLY IN 1% like dennis kucinith, sp! ******************
any iowans reading this note, please make every effort to attend your local CAUCUS MEETNG. JAN. 3 weather/ROADS provided!
thanks for letting me hijack this thread, and now back to DR. JONES HEARING RESULTS, people's feelings, and other attendees comments!
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posted
This is great, Betty. When you're done addressing all the prez candidates, could all your posts addressing them be combined in one for future reference? Are you going to ask any of them if as prez they will need a Secretary of Lyme position filled? Hint, hint! Posts: 13117 | From San Francisco | Registered: May 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
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
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bettyg
Unregistered
posted
TRACY, you've done what you can do by giving us all wonderful, detailed notes of dr. jones hearing.
i'm doing what i can on the presidential campaign trail!
robin, what you have in mind; would the different links be ok to post or my ACTUAL COMMENTS to each be in one? getting up from my evening nap and just coming on here!
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Wow Betty!!!
Maybe you should run for president??
I will vote for you!!
Great work!
Melissa
Posts: 3905 | From USA | Registered: May 2007
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-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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bettyg
Unregistered
posted
stella, god bless you for posting that; I AM TOTALLY SHOCKED! but i used the opportunity to reply back to article with the below. I have company that just came. posting and leaving!
Alex, thank you very much for including me in your recent political article on Chris Dodd for President! I have to admit, you shocked me seeing my name in your journal!
Yes, Iowa is no. 15 out of 50 states with lyme disease reported. 300 other illnesses mimick lyme so it takes along time to correctly diagnose. Some of these include:
Alzheimer's/dementia, Parkinson's, ALS, MS, fibromyalgia, chronic fatigue, Bell's Palsy, and majority of mental illnesses!
Chris Dodd is the only person in congress who has undertaken trying to get a national LYME DISEASE BILL PASSED, which will include lyme research and funding!
IDSA, Infectious Disease Society of America, treats just bitten by ticks or other vector-borne co-infections for UNDER 30 DAYS! They do not believe CHRONIC LYME exists! We do.
ILAS, International Lyme Associate Society, treats CHRONIC LYME patients with antibiotics for longer than 30 days of antibiotics; sometimes years.
I was bitten 38 years this Christmas by a tick that came off my folk's LIVE Christmas tree! I didn't see it; it was not embedded in me, and it did not give me a bulls-eye rash! I got sick and 2 weeks later dr. diagnosed me with mono/epstein barr virus.
I was MISDIAGNOSED for 34 years by 40-50 drs/specialists!
I was the one who researched lyme disease when I heard about it with all my symptoms and got tested by a western blot igm and igg blood test sent to Igenex LYME diagnostic lab in Palo Alto, Calif. I had enough positives to meet CDC stands of being diagnosed for lyme by my 28 year primary care dr.!
You're asking how can a tick live in this COLD weather and be in a tree? Well, they can survive the cold. Deer brush up against them; birds are the biggest carriers of lyme/co-infections; squirrels and mice climb up the trees. The ticks crawl off the animals onto the branches awaiting another live meal!
How I traced mine back to this was easy! I have kept a journal since age 13 and note my health poblems in there as they occur. It was zero or below zero in Iowa. I have no pets and neither did my roommates. Too bold to garden; so that made eliminating things easy!
I enjoyed the story about the ITCH as well, as the majority of us with lyme have gluten; allergic to wheat, oats, barley, AND/or dairy too! Me, it's milk, cheeses, egg whites, and garlic!
So I'm pushing for better labeling of foods so our allergies don't act up on us and we end up in the bathroom most of the day!
We lyme patients in USA SUPPORT CHRIS DODD for president! He has over 30 years of dedicated service in congress MAKING THINGS HAPPEN!
Chris, you've got my vote!! **************************
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bettyg
Unregistered
posted
any of you up to arguing!! try this one out; a reply to my feedback on article about me/lyme disease, etc.
i've seen this KEYLIME name in many other places; always arguing his "distorted" facts!
TINCUP, are you out there! this one was made for you! go get em tiger! **************************
Betty- I'm so sorry to hear of your health troubles.
I'm afraid though that ``chronic'' lyme disease is most likely not the cause of your symptoms. *******************************************
Almost every reputable lyme expert in academic medicine has decicively come out against the idea of chronic lyme.
It's disappointing to me that Chris Dodd has been won over by proponents of this false clinical entity.
Unfortunately, in Connecticut it is a widespread ``problem'' and many people (voters) have been duly decieved so I can understand his position from a political standpoint.
Worst of all though, is that people who are suffering for other causes are being incorrectly labeled as having chronic lyme.
Since there is no such disease, any attempt to treat it is unsuccessful and exposes the patient to unnecesesary risk.
Though you may be firm in your beliefs Betty,
I would direct you and other readers to the latest review article in the New England Journal of Medicine authored by seven of the top infectious disease specialists in lyme
(N Engl J Med 2007;357:1422-30.)
I have no doubt that patients who have been diagnosed with ``chronic'' lyme disease are indeed suffering from very real pain and other debilitating symptoms.
They're just not infected with the bacteria that causes lyme disease.
Unfortunately, there is alot of money to be made and much harm to be exacted by unnecessarily treating such patients with IV antibiotics for months or even years.
From the article:
``Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections.
Other examples that have now lost credibility are ``chronic candida syndrome'' and ``chronic Epstein-Barr virus infection.''57,58
The assumption that chronic, subjective symptoms are caused by persistent infection with B. burgdorferi is not supported by carefully conducted laboratory studies or by controlled treatment trials.
Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted.''
Comment by keylyme - December 21, 2007 at 4:08 pm
you can certainly tell this was written by one of the infectious drs. that WROTE the above journal listing he quoted! what a shame he WON'T GIVE HIS GIVEN NAME/TITLE!
I'm who I say I am! IOWA FARM DAUGHTER AND PROUD OF IT! with chronic lyme disease of 38 years.
posted
Frequent Contributor Member # 6147 posted 23-12-2007 01:55 AM
i'll get my thoughts together and have my rebuttal statement to "DUCK KEYLIME" later during normal hours on here!
wouldn't it be nice if "ducky keylime" were to be ACCOUNTABLE, and use his full given name and medical credentials instead of HIDING UNDER A FALSE NAME!
I, Robin, and Barbara all gave our birth names in our replies; why can't he? chicken? ashamed??? yes, I guess I would be too! --------------------------------------
bettyg Frequent Contributor Member # 6147 posted 25-12-2007 03:24 AM
moderator's ? did you remove the copies of robin'''s and barbara's replies to keyllime that i posted here and in activism? they are gone now??
my reply just now to keylime.... **************************
KEYLIME, what a shame you are hiding behind some nickname instead of giving your full name and title of being an infectious dr. somewhere in America!
Robin, Barbara, and I are who we say we are; in fact, I'm an FARMER'S DAUGHTER from IOWA and proud of it.
You stated, "Almost every reputable lyme expert in academic medicine has decisively come out against the idea of chronic lyme".
We CHRONIC lyme patients are very proud of our LYME LITERATE MDs who treat us; they are very reputable to us vs. IDSA; with the exception of perhaps a dozen who treat us as a ILADS dr. would!
You, keylime, are deceiving the public, but more importantly the CHRONIC LYME PATIENTS nationwide and internationally!
Instead of getting us prompt and CORRECTLY diagnosed, you are jeopardizing our lives by NOT curing us when those are just bitten and have either a tick embedded or a bulls-eye rash.
You, IDSA, are NOT giving long enough antibiotics to kill all the spirochete and any/ALL CO-INFECTIONS that the tick or other vector-borne insect is carrying!
Many like me who have been so sick for DECADES, have had high hopes of getting into REMISSION! We know it is a rarity to be cured when we've had it this long, but some have managed this.
Others have gotten worse, and died as a result of many complications from lyme and other illnesses since they could not get the proper lyme treatment near them. Also, we were not treated long enough and with the correct meds!
You stated, "Worst of all though, is that people who are suffering for other causes are being incorrectly labeled as having chronic lyme. Since there is no such disease, any attempt to treat it is unsuccessful and exposes the patient to unnecessary risk."
Keylime, I'm so sorry you are confused, but it is just the OPPOSITE way; not the way you have written this. You, the IDSA medical community, have deceived us.
You stated, "I have no doubt that patients who have been diagnosed with ``chronic'' lyme disease are indeed suffering from very real pain and other debilitating symptoms." Finally we AGREE on this one point only!
"They're just not infected with the bacteria that causes lyme disease."
Again, your statement above is wrong! Why is it I have medical evidence from 4 of the top LYME DIAGNOSISTIC LABS IN USA? I may have bought your decision if only ONE of the labs had these findings, but 4 with the SAME RESULTS! These labs are reputable!
"Unfortunately, there is alot of money to be made and much harm to be exacted by unnecessarily treating such patients with IV antibiotics for months or even years.
Keylime, you are right; there is money to be made but it is the IDSA Drs. that are making it!! NOT ILADS doctors!
IDSA Drs. have large quantities of stock in many or ALL labs; they've been given many medical grants, and the list goes on.
I refer you to the below article published in NEJM in either Sept. Or Oct. 2007 by Dr. Brian Fallon, Director of the new Lyme Research Center at Columbia University, NYC. I do not have the specific reference no. handy at this early am hour on Christmas morning.
"A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy
B.A. Fallon, MD J.G. Keilp, PhD K.M. Corbera, MD E. Petkova, PhD C.B. Britton, MD E. Dwyer, MD I. Slavov, PhD J. Cheng, MD, PhD J. Dobkin, MD D.R. Nelson, PhD H.A Sackeim, PhD
ABSTRACT
Background: Optimal treatment remains uncertain for patients with cognitive impairment that persists or returns after standard IV antibiotic therapy for Lyme disease.
Methods: Patients had well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment. Healthy individuals served as controls for practice effects.
Patients were randomly assigned to 10 weeks of doublemasked treatment with IV ceftriaxone or IV placebo and then no antibiotic therapy.
The primary outcome was neurocognitive performance at week 12--specifically, memory. Durability of benefit was evaluated at week 24. Group differences were estimated according to longitudinal mixedeffects models.
Results: After screening 3368 patients and 305 volunteers, 37 patients and 20 healthy individuals enrolled. Enrolled patients had mild to moderate cognitive impairment and marked levels of fatigue, pain, and impaired physical functioning.
Across six cognitive domains, a significant treatment-by-time interaction favored the antibiotic-treated group at week 12. The improvement was generalized (not specific to domain) and moderate in magnitude, but it was not sustained to week 24.
On secondary outcome, patients with more severe fatigue, pain, and impaired physical functioning who received antibiotics were improved at week 12, and this was sustained to week 24 for pain and physical functioning. Adverse events from either the study medication or the PICC line were noted among 6 of 23 (26.1%) patients given IV ceftriaxone and among 1 of 14 (7.1%) patients given IV placebo; these resolved without permanent injury.
Conclusion: IV ceftriaxone therapy results in short-term cognitive improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition occurs after the antibiotic is discontinued. Treatment strategies that result in sustained cognitive improvement are needed. Neurology� * * *GLOSSARY"
Keylyme, one final point to make is this:
We chronic lyme patients can not understand WHY the IDSA doctors and our wonderful ILADS doctors DON'T work TOGETHER using the brilliant minds that each doctor has!
May 2008 be the beginning of a TEAMWORK approach on getting IDSA's 2006 LYME TREATMENT GUIDELINES changed to help us CHHRONIC LYME PATIENTS NATIONWIDE and inernationally have QUALITY OF LIFE IN REMISSION! How plain and simple is that to you? Thank you!
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daise
Unregistered
posted
Yay BettyG! That's two politicians!
If enough of us keep watch for politicians traveling to our town on the current campaign trail-- WE COULD MAKE LYME DISEASE A CURRENT BIG DEAL--A CAMPAIGN ISSUE!
For example, we can tie it in with:
1.) "The health crisis" of healthcare.
a.) (Include Social Security payments that have to be made, foodstamps, etc.)
b.) That it's better for everyone if accurate testing is developed.
c.) That ALL docs try to catch EARLY LYME.
d.) Effective, shorter, cheaper treatment needs to be well-funded developed. IDSA can have nothing whatsoever to do with it! IDSA needs to be barred from Lyme research!
2.) Profits over patients? Or PATIENTS OVER PROFITS?
3.) Childhood diseases: KIDS FIRST! We're not going to leave any child behind!
4.) The CDC has a very public face and is supposed to alert the public: "They're asleep at the wheel at the CDC."
If enough of us keep watch for politicians traveling to our town on the current campaign trail-- [i]WE COULD MAKE LYME DISEASE A CURRENT BIG DEAL--A CAMPAIGN ISSUE
*********
Daise, yes I spoke to Chris Dodd twice; once to Bill Clinton where no one else got my thank you in when he didn't allow Q/A!
I heard 5 of 6 top democrats:
obama, edwards, hilary, chris dodd, and joe biden.
richardson..would have except i had a long drs. appt. and it was half done by then and room was JAM PACKED even a stairway going up to storage area! that's when he had actor martin sheen there!
i did write obama a note on lyme disease since he limited Q/A and spent time galore with the YOUNG HS SENIORS/COLLEGE KIDS!
i asked him to co-sponsor SENATE 1708 LYME BILL; 1 month later; he did sign on! coincidence; i'll never know, but i'm taking the credit for getting it done!
IOWA CAUCUS LAST NIGHT; I was so disappointed that Chris Dodd only got 6 of us wanting him; we needed total of 60 people PER candidate to be VIABLE; meaning for them to be included in final totals.
so we had to dissolve DODD, BIDEN, AND KUCINICH'S groups! i joined the other underdog, richardson!
i'd be happy with the other 3 as well. door knockers came to my home from calif. for hillary; okla for richardson; and neighbor for edwards! phone calls were normally 6-12 daily plus emails galore! so tired of all that; nice and peaceful again here today.
i was just reading in our local newspaper that i missed seeing ACTORS TED DANSON & WIFE, MARY STEENBURGEN, SP, TOWNDOWN OLD BREW PLACE EATING after GOING DOOR TO DOOR for Hillary.
last night's caucus showed ACTOR/DIRECTOR RON HOWARD/OPIE at our jr. high school for HILLARY too! my niece was there; i'll have to ask her if she saw him there!! he, wife, and 4 kids were headed to BLACK HILLS on vacation!!
I collect celebrity autographs and sure missed out on lots of them right here in town! uffda!
kevin bacon/band came to h.s. cafeteria and played for john edwards! kevin had heard edwards 1 month prio in NYC and asked what he could do .... come to iowa and campaign. guess he was here 1-2 days.
***************
NEW HAMPSHIRE AND FLORIDA LYMIES ********************************
i hope you will attend EVERY local town hall meeting any of the candidates have!! be prepared for them, and even hand them or their DC STAFF MEMBER a letter from you telling all about your lyme disease, INSURANCES NOT PAYING FOR OUR LYME APPTS., TESTINGS, ETC.
daise, glad you are getting ready where you live. i encourage ALL IN OTHER STATES BETWEEN NOW AND FEB. 5 to do the same; attend meetings and write your letters to candidates
and to your state''s senators/house reps IN DC to co-sponsor S 1708 and HR 741 lyme bills !
grab some of the OUT OF STATE PRESS AND TELL THEM YOUR LYME STORIES! it's a shame CHRIS DODD isn't still in since he wrote the lyme disease bill!
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Congrads on making that contact and a difference Betty.
NOBODY ever comes to OUR state and if they stop by for 15 minuts it is in the BIG towns 150 miles away so can NEVER make contact.
They dont NEED our votes,,,we are too small and insignificant to matter!!
see how living in a populated famous state makes a HUGE difference in life???
We are JUST known as the boring state that takes a long time to drive thru with NO scenery(on the interstate) A drab state to THOSE that dont LIVE here!!!
TOO DULL,,,TOO DRY,,, AND TOO LONG to get out of quicker!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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bettyg
Unregistered
posted
quoting don....
We are JUST known as the boring state that takes a long time to drive thru with NO scenery(on the interstate) A drab state to THOSE that dont LIVE here!!!
TOO DULL,,,TOO DRY,,, AND TOO LONG to get out of quicker!! .....
Don, 1 time I stopped at your collectible car museum, etc. Good to get out stretching and enjoying "old" things around.
Don, you are NOT BORING; never dull; never dry on your wonderful gift of humor, and never long-winded!! So you are representing Nebraska well!
I just got a quick glimpse on news now; is Nebr. in super Tuesday contest or after that? I didn't even get thru reading all the names before they were on the next screen.
Don, Iowa is 3 million folks only;; 1 of top 5 ELDERLY states in USA.
Yes, I count myself being very lucky that THEY/press swarm here for our being 1st in nation with our caucus. many states were changing theirs around which moved iowa's up; some were trying to get IOWA'S AS DEC. 15th !!!
it brought millions of $$ into our state since we are NOT a big tourist area even.
Believe I read where Ron Howard said he/wife had NEVER been in Iowa until they stopped to tromp for Hillary.
Many of these folks were in my town OVER and over since we have a large state university located here. Obama pushed for those and high school seniors getting involved, and they turned out in thousands!!
now to end my post about Chris Dodd.
Tonight I had my monthly diabetes meeting to go to, so picked up a pizza from Papa Johns; my favorite place.
I forgot all about it, but I still have CHRIS DODD FOR PRESIDENT BUTTON ON MY runaround in COAT! Said I'd continue to wear it since Chris wrote our lyme disease bill, and I'd continue to push folks on getting it out of committee to be voted on in both houses and signed by Pres. George W. Bush!.
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bettyg
Unregistered
posted
forgot to come back here and mention that my 2nd email to WALL STREET JOURNAL they did NOT put on their website!
don't know if only ONE LETTER PER PERSON or DEFINITELY THE LENGTH OF IT!!
still never to late for more LYMIE FEEDBACK to that hosital idsa duck!
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