This is topic I talked to former Pres. Bill Clinton in Ames, Iowa today about lyme disease bill! in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:

Posted by bettyg (Member # 6147) on :

full house stuffed in those small seats with NO leg room! HE DIDN'T DO Q/A. after applause ended, I hollered out,

"Bill, please thank Hillary for co-sponsoring the lyme disease bill in senate on behalf of us lyme patients." He couldn't hear the 1st, so I repeated it. So you have a problem with lyme in IOwa?

YES, WE ARE NO. 15 OUT OF 50 states with it.

so then he talked about stem cell research for various illnesses! I'm patting myself on the back! he shook hands for 3-4 minutes and left!

Betty G
Posted by Robin123 (Member # 9197) on :
Congrats, Betty!! So if Hillary becomes prez, she could put the First Gentleman in charge of fixing the Lyme problem...
Posted by shazdancer (Member # 1436) on :
Nice work, having a pitch ready to go like that, Betty! We should all practice having a sound bite and a follow-up.

Well done,
Posted by Andie333 (Member # 7370) on :
Good for you, Betty!
Posted by yanivnaced (Member # 13212) on :
Good work Betty.

Bill and Hilary at one point lived in Chappaqua. Which is in Westchester County NY - one of the epicentres of Lyme disease.

They're probably very familiar with Lyme.
Posted by Monica922 (Member # 13496) on :
You go Betty!
I go to the LLMD right near where they live [Smile] I think they have a research org there also but I have not been able to reach them.
Posted by stella marie (Member # 7216) on :
Betty G.... you never cease to amaze me, in a good way of a course!!!
Posted by Michelle M (Member # 7200) on :
Way to BE HEARD, BettyG!!

Posted by merrygirl (Member # 12041) on :
Great Job!!!!!!

You rock!!

[woohoo] [woohoo] [woohoo]
Posted by 6t5frlane (Member # 8628) on :
I live in NY. As far as I know Hillary did noy introduce any Lyme legislation. Sen Dodd did. ( Bill S1479 )Hillary along with 11 other Sen. sponsored same. Also REp. Christopher Smith ( Repulican )introduced HR 3427 that never became law ( lyme ) . I'm sure she will take credit for it if you mention it to her,but thats not the case. If there is another I'm not aware of it
Posted by Vermont_Lymie (Member # 9780) on :
You're the best Betty!

Good time to reach the candidates, as they are reaching out to the voters. I read that Clinton recently came out with a new proposal to fund research on autism.
Posted by CaliforniaLyme (Member # 7136) on :
BETTY! You are so awesome!!
Posted by radfaraf (Member # 11909) on :
[woohoo] superbetty
Posted by lymemomtooo (Member # 5396) on :
Way to go Betty...Now if we could reach all of the potential candidates...You Rock gal.. [woohoo]
Posted by bettyg (Member # 6147) on :
Originally posted by 6t5frlane:

I live in NY. As far as I know Hillary did not introduce any Lyme legislation. Sen Dodd did. ( Bill S1479 ) Hillary along with 11 other Sen. sponsored same.

Also REp. Christopher Smith ( Repulican )introduced HR 3427 that never became law (lyme ) .

I'm sure she will take credit for it if you mention it to her,but thats not the case. If there is another I'm not aware of it


new nos. S 1708 and HR 741

on senate bill, hillary and obama have BOTH CO-SPONSORED the newest bills.

FYI, no republicans have co-sponsored either bill from when i checked last week when pineapple updated both bills with new names!

ALSO, 2 other major things i forgot to say above:

1. bill talked about his FOUNDATION raising funds for HEALTH: HIV/AIDS, etc. and i was thinking to myself.

we should approach his foundation also on the LYME ISSUES! what do you think?

2. bill also told about a VIP contacting him who wanted to play golf on a prestengous course in NYC. bill was able to make some arrangements including getting caddies!

bill was about to get into a golf cart, when the caddy took him firmly by the arm. "you know I'm NOT a caddy"! bill's 1st thoughts were, "oh, a terrorist"!!

my full-time job is a NYC FIRE DEPT. CAPTAIN, who was involved in 9-11 !! it was YOUR wife, hillary, who came to our aid right away and being ON SCENE. she saw all the dangerous chemicals we were breathing 24/7.

environmental people came but they were wearing MASKS FULL-TIME WHEN THEY WERE THERE.

it was hillary saying we need to provide for those workers who will have health problems due to what they have breathed.


hillary again came thru over and over for us! we used to brag we were republicans, mocho men, etc.

but NYC FIRE/POLICE DEPTS. ARE NOW DEMOCRATES due to your wife, hillary clinton, who have helped us get our needed health services!


WOW, GUYS, THAT WAS POWERFUL! it was all i could do to restrain myself in my seat from hollering out, "yes, that''s what it is like to have chronic lyme disease!"

it was amazing listening to him telling about from college how she has been involved in KIDS programs and being a "CHANGE AGENT"! she would tackle things over and over making necessary CHANGES to that system.

at one time when they were dating 35 yrs. ago, he told her to DUMP HIM and go on with all her plans on helping people with the most powerful NYC LAW OFFICES!

anyway, i'm really glad i went to hear and put my 2 cents in. I HAD MY HANDMADE SIGN TOO thanking her, obama, and CHRIS DODD for cosponsoring bill that dodd/smith wrote, but they would NOT LET ME TAKE IT INTO THEATER! darn, i forgot it there! did send a note to 1 of 2 hillary people who send me emails 2-3 times a wk. asking for it back IF they saved it!

yes, ALL politicians have been hitting IOWA STRONG! we get normally from 1-5 phone calls daily plus 2-3 mails and EMAILS!

it's ridiculous when they are right IN MY CITY to not go hear what they have to say and put LITTLE COMMENTS IN WHEN I GET THE CHANCE! [Wink] [lol]
Posted by 6t5frlane (Member # 8628) on :
Like I said Hillary did NOT introduce any Lyme legislation...Thanks
Posted by Soleilpie (Member # 8481) on :
Yay Betty!
Posted by 6t5frlane (Member # 8628) on :
BTW. Not sure where you get your Hillary info but it was Carolyn Maloney and Robert Menendez that introduced legislation on behalf on the 9/11 first responders. " The Zadroga " act HR3427. ( still not passed . Hillary attached herself to that and also wanted some other legislation on there behalf. Her story is that the " right wing conspiricy " put a stop to it. She forgets to put the part in that it EXcluded all the first responders to the Pentagon and flight 93. While she may really feel for this group it would look like a " PR " stunt. Maybe this will give you an idea
Not trying to stir up a political thing but she seems to get a lot of free press that sometimes just ain't true. As far as Bill goes, well he has been caught lying so many times I lost count
Posted by Tincup (Member # 5829) on :
Well look at you.. a real voice for all of us!

Thank you BettyG for doing that!

I was just told that the folks running for office are more likely to sign on as co-sponsors if another canidate has. They don't want to be up'd one.

Chris Dodd has been our Lyme life line and since he is running.. it is "cool" for the others to join on.

The legislators office also told me that is a good thing for us.. as it is no longer a state issue... it is a national one.

So thanks for jumping up and down in your seat and telling them like it is.

We need a lot more BettyG's in our camp!

You keep up the good work BG!!! And thanks!

[Big Grin]
Posted by adamm (Member # 11910) on :
The Clintons are Bilderbergers, are they not?

[ 11. December 2007, 02:47 PM: Message edited by: adamm ]
Posted by map1131 (Member # 2022) on :
Go Betty, go Betty, go Betty. Rah!!!!!

Boy, they are going to get so tired of hearing us all.

Posted by bettyg (Member # 6147) on :
tincup, you are embarrassing me, you know! [Embarrassed]

you know i don't have a BASHFUL bone in my body, don't you all know?

a former woman management co-worker once told me, "Betty, you've got more balls than anyone I know of!"

she said that after I called in on a radio program where our then current governor was talking about issues! Since he was NON-UNION, and I was a clerical union steward, I brought up to him the union contract being negotiated, and was he finally going to TRY to work with them for a mutual satisfying contract? He dodged the question just saying, sure i will work with them as usual!
Posted by savebabe (Member # 9847) on :
Betty rules!!!
Posted by jblral (Member # 8836) on :
Yay, Betty! Now can we get somebody to do something similar at an Obama rally?
Posted by just don (Member # 1129) on :
Betty Rocks,,,yes she does!!

[woohoo] [woohoo] [woohoo]

Thank YOU for voicing your concerns!!!unlike--just don--
Posted by daise (Member # 13622) on :
Yay BettyG! [kiss]

Robin said,
"Congrats, Betty!! So if Hillary becomes prez, she could put the First Gentleman in charge of fixing the Lyme problem..."

Yes! [Razz]

Somebody else said you have balls. Here's for BettyG's Balls! [woohoo]

Way to go, woman!

Daise [hi]
Posted by bettyg (Member # 6147) on :
0prah was here supporting obama in DES MOINES last sat night with 18,000 crammed in there with people passing out galore.

a friend went and STOOD entire time 20' from them! i'll have to ask her if they had Q/A or not!

obama was here july 5th; i wrote a handwritten note to him and gave to his DC STAFF member about lyme bills, nos.etc. and ASKED HIM TO CO-SPONSOR or lyme bill. i noticed i think it was AUG. WHEN HE DID CO-SIGN!


thanks daise for your cute, hilarious saying!! [lol] [Wink] [group hug] [kiss]
Posted by roro (Member # 13383) on :
wtg bettyg!!!!!

6t5frlane, I don't know why you keep saying "Hilary didn't introduce any legislation" bettyg never said she did.

she said Hilary "co-sponsored" the lyme bill, which means she signed it. those who signed it are FOR us.
Posted by bettyg (Member # 6147) on :
thank you everyone for your many comments!


roro, thanks for clarifying what i did say above! [group hug]
Posted by perplexed (Member # 1913) on :

Your unfailing energy always amazes me. Good for you!!

Hugs, Perplexed [woohoo]
Posted by Greatcod (Member # 7002) on :
Nice job--a role medel for getting to the big time inacessible politicans.
Posted by groovy2 (Member # 6304) on :
Thanks Betty -
Posted by WildCondor (Member # 434) on :
Good job Betty! Keep yelling!!!

We all have to keep yelling and screaming and make them listen!!!
Posted by SuZ-Q (Member # 5903) on :
Alright, Betty!!!!
Posted by evgen (Member # 14118) on :
well, it good when some of your politicians are concerned about lyme. Non of them here in Russia, we do this fight on our own
Posted by bettyg (Member # 6147) on :
evgen, so sorry you in russia have to fight so hard for anything like our lyme disease! [group hug] [kiss]
Posted by bettyg (Member # 6147) on :

time to reply for you researchers/arguers. i'm going to my family's christmas gatering today so no time to respond, but get em guys!! thanks!


Frequent Contributor
Member # 9197
posted 20-12-2007 04:59 PM
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: 1351 | From: San Francisco | Registered: May 2006 | IP: Logged

Frequent Contributor
Member # 7521
posted 20-12-2007 11:24 PM
Well.....YOU ROCK, GIRL!!!!

Posts: 368 | From: Connecticut | Registered: Jun 2005 | IP: Logged

Frequent Contributor
Member # 6147
posted 21-12-2007 12:03 AM
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!
Posts: 12479 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged

Frequent Contributor
Member # 12041
posted 21-12-2007 09:28 AM
Wow Betty!!!
Maybe you should run for president??
I will vote for you!!
Great work!

Posts: 1103 | From: USA | Registered: May 2007 | IP: Logged

stella marie
Frequent Contributor
Member # 7216
posted 21-12-2007 11:48 AM

Betty G,
Here is some copy of your chat w/ Dodd. It's from the online Wall Street Journal, not sure if you saw this yet.
Stella Marie
Posts: 457 | From: over there | Registered: Apr 2005 | IP: Logged

Frequent Contributor
Member # 6147
posted 21-12-2007 02:03 PM
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!!

info purposes only;NOT CONSIDERED MEDICAL ADVICE!Info providedshould NOT be used replacing YOUR PERSONAL MD ADVICE.SITE LINKS are provided for EASY RESEARCH.Site Info is the opinion of those WHO publish the sites;NOTnecessarily that of Betty G.
Posts: 12479 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged

Frequent Contributor0
posted 22-12-2007 03:17 AM

any of you up to arguing!! try this one out; a reply to most 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.

info purposes only;NOT CONSIDERED MEDICAL ADVICE!Info providedshould NOT be used replacing YOUR PERSONAL MD ADVICE.SITE LINKS are provided for EASY RESEARCH.Site Info is the opinion of those WHO publish the sites;NOTnecessarily that of Betty G.
Posts: 12479 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged
Posted by Robin123 (Member # 9197) on :
Ok, Betty, I took first crack at responding to Keylyme. We got 'em in a squeeze right now. I encourage others here to join in the "chronic Lyme does exist" argument.
Posted by lymie tony z (Member # 5130) on :
Very Very good BettyG,

But I thought you were sick?

You're doing this while not feeling too well is an inspiration to us all.

Even if you might not like the candidate who is appearing near you....

Even if it's for an hour or so away from our friendly couch's...

we have got to make the effort of getting in the public's face....


Again, congrats BettyG

Posted by lymednva (Member # 9098) on :
I posted my reply! [Big Grin]
Posted by bettyg (Member # 6147) on :
robin and barbara!

BRILLIANT letters each of you wrote! i'll have to go back after my christmas family together today to read it again tonight when i have time!
[group hug] [kiss] [group hug] [kiss]

thanks to both of you for writing and bringing out great things.

also i hope someone includes brian fallons recent NJMD lyme study; long term abx do help! gotta leave now for noon luncheon!!
Posted by bettyg (Member # 6147) on :
hi tony z,

i've got more fatigue than anything, and i'm blessed to be NOT BEDRIDDEN like so many of you.

so when events are right HERE IN TOWN where i can get there in 5-15 minutes top, WHY NOT GO?

i have been blessed to be very vocal, and i mentioned that to my 3 brothers today; we're all opinionated and hard workers like our folks were, and my late sister.

i have to be very careful with our 2" of ice from 1.5 weeks ago; we're expecting another one tonight/tomorrow! i got home today before the snow started. WINDY; awful on roads.

with my new left hip and falling twice in sept/oct. spraining my right wrist bad ... CAREFUL is the name of the game and i use my cane to help me get myself balanced.
[Big Grin]

so i have put out my EMPASSIONED PLEA!

look for the presidential candidates coming to YOUR LOCAL AREAS in the early states and TALK TO THEM every chance you get about your lyme disease, and passing our SENATE/HOUSE LYME BILLS IN WASHINGTON DC!

better yet, have your personal story typed up and give to THEIR "LOCAL" STAFF REPS OR ANY WORKING THE CROWD THERE SIGNING YOU IN, ETC. they will get your letters to these candidates!


pres. bill clinton came to same city where one of my brothers lives today where our xmas was held!
Posted by bettyg (Member # 6147) on :
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!
Posted by bettyg (Member # 6147) on :
texas, here you go; it was buried since i copied the entire post from elsewhere to THIS thread! so sorry!!

Betty G,
Here is some copy of your chat w/ Dodd. It's from the online Wall Street Journal, not sure if you saw this yet.
Stella Marie
Posted by bettyg (Member # 6147) on :
i'm copying again robin and barbara's replies to keylime, infectious dr. below; they disappeared somewhere as welll as my early am response today!
i broke them up since the site doesn't recoginize paragraph spacing! i highlighted some of the outstanding rebuttal comments too; enjoy! betty

my lengthy response in early am IS NOT SHOWN ON WALL STREET ST. OR HERE; i copied to them both but was ready to go to bed then; trying again!

KeyLyme, I have to disagree with your comments here.

There are plenty of reputable Lyme experts in academic medicine who know about the reality of chronic Lyme.

New York City's Columbia University's new Tickborne research Center, which just opened last year, is dedicated to researching all aspects of chronic Lyme.

The medical organization that understands chronic Lyme is ILADS, and the Burrascano guidelines spell out standard antibiotic treatments for attacking all three forms of the Lyme bacteria.

I don't believe the seven specialist mentioned in the NEJM treat many patients with Lyme nor get them better like ILADS doctors do.

Patients languish without antibiotics, and with them, many recover fairly well after prolonged oral/IM/IV treatment.

You can't prove people with Lyme don't have Lyme.

The bacteria can hide intracellularly and also hide in cyst form. Studies have shown the bacteria in tissues.

The authors listed in the NEJM have vested interests in Lyme tests, vaccines, consulting for insurance companies, etc, and as such, are under investigation currently by the CT atty general for anti-trust violations.

I understand the IDSA guidelines created by the NEJM authors rely upon 400 of their own studies, out of at least 19,000 that exist -- ie, that's approximately 2% of the total.

And a great many of the total show the persistence of Lyme in tissues and the blood. The Lyme bacteria can be seen in the blood with darkfield microscopy.

I think you could benefit from looking at some of these other studies. And by the way, candida can be clearly detected in blood and stool tests.

Comment by Robin K - December 22, 2007 at 4:59 am

Keylime, I suggest you read the following response to the NEJM article mentioned above.

I have had Lyme Disease for over 40 years. I was finally diagnosed 20 months ago, when I had already had to leave the job I loved as an elementary school teacher.

This disease has totally changed my life, causing an irreparable rift in my 24 year marriage which ultimately ended in divorce, taking away my career when I was in the prime of my life, putting me in bed for hours a day, and sometimes months at a time, due to severe fatigue and inability to even sit up for more than 30 minutes at a time.

After being in treatment for Lyme and co-infections for 20 months I am beginning to see improvement. People who know me are noticing it.

However, I am nowhere near ``normal.'' I really have no idea what that is, having been ill so long.

What I can tell you is that I am still very limited in the activities in which I can participate. I suffer from severe cognitive deficits, fatigue, chronic pain, and spend too many hours at home, or watching when I would much rather be out ``playing'' with others.

This disease has changed my life. I won't get the old one back, but I am learning to live within my limitations, and finally have hope.

You see, when I received a diagnosis of Lyme Disease I was given hope. I no longer was resigned to a life spent in bed watching from the sidelines. Now I can enjoy time with my friends and family. I have a long way to go, but I am happy to finally be making progress in my road back to health.

You see, Chronic Lyme DOES exist, and with proper long-term treatment it can improve. I am not resigned to a life of pain and suffering.

I am looking forward to my future and being an active participant in the lives of my children, and their children, traveling, and just enjoying life!

Comment by Barbara H. -
December 22, 2007 at 10:17 am

my reply again; will try to POST onnline site again; maybe it was too lengthy!! [confused]

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


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! [Smile]

Betty G, Ames, Iowa
Posted by bettyg (Member # 6147) on :
thank you so much scientist MOM!

kudos for the wonderful letter you wrote and published on lymenet! i appreciat it very much.

i was totally shocked and hurt to be attacked like that! thank you for stepping forward with your info!

did you see the post where sarah/california lyme posted where infectious dr. zemel responded and was nasty? think it's in medical and has many replies. if you find it, please reply to that one also.

so nice to have scientists part of our ALL PROFESSIONS MEMBERS! [group hug] [kiss]
Posted by bettyg (Member # 6147) on :
I forgot to come back here and update on my REBUTTAL LETTER TO KEYLIME DUCK! on WALL ST. JOURNAL ONLINE EMAIL HE WROTE attacking ME!

Journal did NOT show onilne my rebuttal letter whether it was because:

too lengthy or 1 letter per person; don't know!

still time for more REBUTTALS TO DUCK KEYLIME! [hi]

Powered by UBB.classic™ 6.7.3