randomised controlled trials

Join us on Friday October 28th and Saturday October 29th to view streaming video of the The Twelfth Annual ILADS Lyme Disease Conference which is designed to foster collaboration and dialogue between Lyme disease researchers and those who care and advocate for Lyme disease patients in a variety of settings.

The conference will provide updates in clinical knowledge, treatment techniques and innovations in care. To view the entire conference program, click here.

http://www.ustream.tv/channel/ilads-2011-lyme-disease-conference

#593

From: Phyllis Mervine <pmerv@...>
Date: Fri Oct 28, 2011 1:38 am
Subject: new Lyme Times is out

kmnehlatc

LymeDisease.org (formerly CALDA) members have already received their Lyme Times (see below) in their mailboxes. If you haven't seen it yet, we have updated our "look." Same mission, same great content. Don't you want one, too? All you have to do is join -- The Lyme Times is a benefit of membership. Go to lymedisease.org and click on the little Join link in the upper right-hand corner. If you don't want to join online, you can send us a check. Instructions are on the page.
Phyllis Mervine
LymeDisease.org

#594

From: Phyllis Mervine <pmerv@...>
Date: Tue Nov 8, 2011 3:34 am
Subject: LymeWalks

kmnehlatc

I'd like to thank all those who donated to my Lymewalks page. Together
we raised $931 on my page alone!

Imagine what we could do if 10 or 100 or even 1000 people set up pages
and sent the link to their friends and family.  If 1000 people raised
even $50 each, that would be quite a sum! And if 5,000 people raised
$100 each -- wow!  A lot for research!

Next year!!!

The actual Walk was September 25, but donations are still coming in. If
you missed it and want to donate, go to
http://www.firstgiving.com/CALDAlymewalk, click on Donate directly to
this nonprofit at the bottom of the right hand side. All monies go
directly to fund Lyme research.

In case you didn't notice, CALDA changed its name to LymeDisease.org, to
reflect more accurately the national work we are doing. Lymewalks was
set up under the CALDA name.

Forward, together!
Phyllis Mervine
LymeDisease.org

#595

From: Phyllis Mervine <pmerv@...>
Date: Tue Nov 8, 2011 4:39 am
Subject: It would be FUNNY if it weren't so TRUE

kmnehlatc

http://goanimate.com/user/0O9iSj3Bg6aA

not a hoax but a clever video.
Phyllis Mervine
LymeDisease.org

#596

From: Phyllis Mervine <pmerv@...>
Date: Tue Nov 15, 2011 3:20 am
Subject: Need a laugh?

kmnehlatc

You know how IDSA is always saying the "randomized clinical trials" show that antibiotics do us no good and may be dangerous? How any evidence that long-term antibiotics are helpful is "anecdotal"? Well here's a tongue-in-cheek article with a different take on

randomised controlled trials

http://www.bmj.com/content/327/7429/1459?tab=full

Phyllis Mervine
LymeDisease.org

#597

From: Phyllis Mervine <pmerv@...>
Date: Mon Dec 5, 2011 6:25 am
Subject: Lyme Makes Top Censored Story List

kmnehlatc

Project Censored: Media - Democracy in Action has listed Lyme disease as
#21 on its list of 25 Top Censored Stories for 2012. Citations include
national Lyme Disease Association, Centers for Disease Control,
International Lyme and Associated Diseases Society, and Under Our Skin.
Read more about it at
http://www.lymedisease.org/news/touchedbylyme/projectcensored.html

#598

From: Phyllis Mervine <pmerv@...>
Date: Wed Dec 7, 2011 7:51 pm
Subject: Still time to take Lyme patient survey; end date is Dec. 31

kmnehlatc

If you haven't taken LymeDisease.org's patient survey yet, please take a moment to share your views. The patient perspective on Lyme treatment options is largely ignored by the medical establishment. With information from this important survey, we hope to change that!

Click here to learn more about the survey and to take it yourself.

(Note: the system only allows one survey per computer. If you have multiple family members with Lyme, they will need access to additional computers to take the survey.)

Phyllis Mervine
LymeDisease.org

#599

From: Phyllis Mervine <pmerv@...>
Date: Fri Dec 9, 2011 4:29 am
Subject: Re: Still time to take Lyme patient survey; end date is Dec. 31

kmnehlatc

If the previous link didn't work for you, try these.

To find out more about the survey and take the survey
http://www.lymedisease.org/news/lyme_disease_views/surveyends.html

To go directly to the survey
http://www.surveymonkey.com/s/XLG5QTG

The medical establishment ignores our views. Let's knock their socks off!

Phyllis Mervine
LymeDisease.org

On 12/7/2011 11:50 AM, Phyllis Mervine wrote:

If you haven't taken LymeDisease.org's patient survey yet, please take a moment to share your views. The patient perspective on Lyme treatment options is largely ignored by the medical establishment. With information from this important survey, we hope to change that!

Click here to learn more about the survey and to take it yourself.

(Note: the system only allows one survey per computer. If you have multiple family members with Lyme, they will need access to additional computers to take the survey.)

Phyllis Mervine
LymeDisease.org

#600

From: Phyllis Mervine <pmerv@...>
Date: Wed Jan 4, 2012 3:51 am
Subject: What happens if you change your email address

kmnehlatc

If you change  your email address and don't tell Yahoo, they will
continue to send emails to your original address. Very quickly, your
status will be changed to "bouncing" and you will not receive any more
emails from the group.

If you change your email address, let Yahoo know. There are 2 ways to do
this.
1. If you get Daily Digest -- by clicking on Change settings via the Web
on any email you receive from the group.
2. If you get Individual Emails -- by clicking on Visit Your Group and
then on Edit Membership at the top of the home page of the group.

If you change email addresses and don't tell Yahoo, Yahoo will not know
who you are and you will not be allowed access to the group.

Periodically (but not very often)I go through the lists and clear out
the bouncing members. If you don't want to be bounced or cleared out,
please take care of address changes promptly!
Phyllis Mervine
LymeDisease.org

#601

From: Phyllis Mervine <pmerv@...>
Date: Fri Jan 6, 2012 2:09 am
Subject: Do you have anything that worked well for pain?

kmnehlatc

I'd like to collect responses and maybe write something up for the Lyme
Times. It seems like various kinds of pain are a problem for many. Will
you please share your solutions? When you reply, please copy to my
personal email address, pmerv@... in case I miss it on the group.
Phyllis Mervine
LymeDisease.org

#602

From: Phyllis Mervine <pmerv@...>
Date: Thu Jan 26, 2012 7:43 am
Subject: WOW! You all are the Petition Queens & Kings!

kmnehlatc

from Tincup of MD

I was hoping to see 5,000 signatures on the petition by Valentines Day. It is very possible we will make it, especially considering in less than 24 hours- 11:00 PM last night to 10:35 PM tonight....

We got over 3,000 signatures!

Absolutely amazing! Cheers and applause to you! Having the community working together to give the IDSA guidelines the boot is wonderful!

Keep up the good work, and thank you for signing on! Thank you also for sharing this petition with everyone you know!

Direct Link to Petition http://www.lymedisease.org/petitionscript/index.php

#603

From: Phyllis Mervine <pmerv@...>
Date: Tue Jan 31, 2012 4:08 am
Subject: We are up over 8,000 on our petition!

kmnehlatc

Miki from Washington wrote this (BTW it's not true, it's a joke):

There are now 7500 signatures, night of January 29, five days into the signature collection campaign.

There is a rumor that with 10,000 signatures, the IDSA Lyme guidelne authors will be given a life sentence in jail.

15,000 signatures, they get sent to Guantanamo.

20,000 signatures, they will have accomodations in Iran.

Let's get them out of the country!

Miki

Sign now and encourage friends and family to sign!
http://www.lymedisease.org/petitionscript/index.php

#604

From: Phyllis Mervine <pmerv@...>
Date: Fri Feb 3, 2012 1:51 am
Subject: Petition Nears 10,000 Signers!

kmnehlatc

Can we top 10,000 by midnight? Let's try! We are that close - we need fewer than 200 more signers. Sign here
http://www.lymedisease.org/petitionscript/index.php

Meanwhile, New York Senators Blumenthal (former CT Attorney General) and Gillibrand have written to the National Guidelines Clearinghouse and Lyme Policy Wonk has a new blog,

Senators Request Removal of IDSA Lyme Guidelines from National Guidelines Clearinghouse

Click here to read more
http://lymedisease.org/news/lymepolicywonk/index.1.html

2nd February 2012

#605

From: Phyllis Mervine <pmerv@...>
Date: Fri Feb 3, 2012 4:36 am
Subject: Countdown to 10,000

kmnehlatc

If you time it right, you might be #10,000! 25 more to go!

#606

From: Phyllis Mervine <pmerv@...>
Date: Fri Feb 3, 2012 6:00 am
Subject: We Did It!

kmnehlatc

We made 10,000!! In the last few minutes, Lorraine and I were sending emails back and forth every few seconds: "TEN," "SIX," "FOUR," etc. It was changing so fast I almost missed it. We were laughing.

Let's not stop here. The more we have, the better. Thank you all.

#607

From: Phyllis Mervine <pmerv@...>
Date: Fri Feb 10, 2012 10:32 pm
Subject: Thousands of Patients Rally Around Petition

kmnehlatc

Over 11,600 people have signed the NGC petition!

HOWEVER, lest people see this as less urgent because of the response so far, we have to do even better than that. And given the power of the IDSA we need to do as well as we possibly can. This is a pivotal point in our fight to get effective medical care and funding for research.

The IDSA has the money and the power, and now they have committed what seems to us to be fraud in order to continue with their denial of chronic Lyme disease. And the government group, the National Guidelines Clearing House, is about to leave the controversial IDSA guidelines up on their website, implicitly bestowing government legitimacy on them -- unless we can stop them. The IDSA guidelines sanction medical neglect.

Let's at least double our numbers!

The IDSA 2006 guidelines are flawed, outdated, and harm patients. The petition calls on the National Guidelines Clearinghouse to remove the guidelines from their website and calls on the IDSA to revise the guidelines. With your help we should be able to double, triple, quadruple our numbers. This is a pivotal point in our fight to get effective medical care and funding for research.

Join the fight now! Sign here (you don't have to have Lyme to sign)

http://www.lymedisease.org/petitionscript/index.php

Thank you! Together we will prevail!

#608

From: Phyllis Mervine <pmerv@...>
Date: Sun Feb 12, 2012 4:13 am
Subject: Petition almost to 12,000!

kmnehlatc

11,904 people have signed the NGC petition. Have you sent reminders to family and friends?

#609

From: Phyllis Mervine <pmerv@...>
Date: Thu Feb 16, 2012 10:16 pm
Subject: NGC Petition really, really needs your support

kmnehlatc

http://www.lymedisease.org/petitionscript/index.php

Hi folks,

We really need EVERYONE who sees this post to make the petition to the National Guidelines Clearinghouse their own personal priority right now http://www.lymedisease.org/petitionscript/index.php

Send a note to everyone who has any idea that you've been struggling with this terrible illness, and ask that they sign the petition. Ask that they send it to everyone they know. Write back in a few days to remind them. Be a pest! Allow me to role model for you :-)

If they want more info than just your educated request, then let them know that:

1) the IDSA has fraudulently claimed that their guidelines have been updated, thereby enabling them to perpetuate controversial, flawed guidelines that deny that OUR illness (chronic Lyme) even exists.

2) the National Guidelines Clearinghouse (NGC), part of DHHS, has accepted the claim of updating by the IDSA, thereby giving the controversial guidelines implicit government support by continuing to post them on the NGC website.

3) faced with considerable evidence of the falsity of IDSA's claim of reviewing the guidelines according to the rules, and faced with letters from a number of legislators the NGC has agreed to review their decision.

BUT IT HAS BEEN WEEKS AND THE GUIDELINES REMAIN POSTED.

The only strength we have is in showing considerable public support. The tool we have for that now is the petition http://www.lymedisease.org/petitionscript/index.php

The response we have had to the petition is, frankly, anemic. This can only be because Lyme patients don't get how urgent this is.

Thirteen thousand signatures on the petition tells the NGC that we have weak or no public support. It doesn't even show the support of everyone with the illness who's online.

Please don't just let them roll over us. This is a pivotal point for us. If we can't even do this successfully,. forget about your plans for protests, sit ins, rallies, marketing campaigns etc.

There's an old joke that some of you may know from which I learned the life lesson that if you're drowning, you get on the first lifeboat that shows up. We're drowning from Lyme disease. Right now this petition could be a strong lifeboat.

Thanks,

Ellen Lubarsky, NewYorkLyme

#610

From: Phyllis Mervine <pmerv@...>
Date: Thu Feb 23, 2012 3:55 am
Subject: NGC Petition up to 15,000!

kmnehlatc

It's exciting that we have reached this milestone, but as the White Queen told the panting Alice, if you want to GET anywhere, you have to run twice as fast.

We can't stop here, not when this is what the CDC still has on their website about chronic Lyme -- I mean "Post-Treatment Lyme Disease Syndrome." Implying of course that persistent infection has nothing to do with symptoms that persist after standard treatment.

If you're in a hurry, don't read further. Just scroll to the bottom to find the link to the petition and remind all your contacts we still need signatures. I am not suggesting you forward this whole email to your friends and family. They may believe the CDC and think you should just follow their advice.

Here's what they say. ( http://www.cdc.gov/lyme/postLDS/index.html ) I'm sure you can spot many inaccuracies, starting with the "10-20%." The real number is actually closer to 50%.

Post-Treatment Lyme Disease Syndrome

Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches¹. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme disease Syndrome” (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that lingering symptoms are due to residual damage to the tissues and the immune system that occurred during the infection. Similar complications and auto-immune responses are known to occur following other infectious diseases.

In contrast, a few health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. However, there is no credible scientific evidence that PTLDS is caused by persistent infection. More importantly, studies have shown that patients treated with prolonged courses of antibiotics do not do better than patients treated with placebo.

The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months or even years to feel completely well. If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Doctors may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions instead. It simply means that the doctor is trying to help you cope with your symptoms using the tools available.

You may be tempted to try treatments that are unproven or non-standard in order to feel better. Unfortunately, many fraudulent products claiming to treat “chronic Lyme disease” are available on the internet or through some providers. These products have not been shown to help and can be toxic and even deadly.

It is normal to feel overwhelmed by your ongoing symptoms. Some things that may help you manage your PTLDS include:

Confirm your diagnosis. Make sure that Lyme disease is the only thing affecting your health.
Become well-informed. There is a lot of inaccurate information available, especially on the internet. Learn how to sort through this maze.
Track your symptoms. It can be helpful to keep a diary of your symptoms, sleep patterns, diet, and exercise to see how these influence your well being.
Maintain a healthy diet and get plenty of rest.
Share your feelings. If your family and friends can't provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need.

Sign our petition at http://www.lymedisease.org/petitionscript/index.php

1 of 1 Photo(s)

petition 15,000.jpg

#611

From: Phyllis Mervine <pmerv@...>
Date: Tue Feb 28, 2012 3:48 am
Subject: Becoming an activist for the Lyme cause!!

kmnehlatc

Hi folks,
Have I mentioned that we all need to get on this job of getting many thousands more signatures for this petition. http://www.lymedisease.org/petitionscript/index.php

Do you get what happened here?

----The IDSA knowingly (fraudulently) misrepresented to the National Guidelines Clearinghouse that they had followed the rules and reviewed their controversial 2006 IDSA Lyme guidelines.   These are the guidelines which have been responsible for insurance coverage denials, and for preventing funding for research for chronic Lyme disease.

----The National Guidelines Clearinghouse (part of DHHS) accepted the lies, didn't follow their own guidelines, and kept the 2006 on their website, thereby giving them credibility as new guidelines - which would be valid for FIVE MORE YEARS. FIVE MORE YEARS without research funding or insurance reimbursement.

----If Lorraine Johnson of Lymedisease.org (formerly CALDA) had not picked up on this we would have been sunk. Even after she complained to NGC they did nothin.   They commented to Lorraine that she was apparently the only one bothered by this??!!

----Only the pressure put on NGC by legislators got them to reevaluate their decision.

----Now the NGC needs to hear that "the whole world is watching" - or as close to that as we can muster. We need to gather enough signatures to let them know there will be public pressure if they do not act honestly and fairly.

PLEASE NOTICE THAT WHENEVER THERE ARE A FLURRY OF POSTS ABOUT THIS THE NUMBER OF SIGNATURES RISE TEMPORARILY - THEN ALL BUT STOP. SO PLEASE KEEP UP REMINDING PEOPLE TO SIGN THE PETITION. IT'S NOW STALLED AT BELOW 16,000. I PROMISE YOU THAT IF YOU KEEP REMINDING PEOPLE ONLINE THEN NUMBER WILL START TO GO UP AGAIN. PROMISE.

For those who want to gather signatures in their neighborhood, I will attach the paper petition which is a little different from this in that it shows the importance of this issue for everyone's medical care in general. Print it out and use it!!

But, frankly, there are so many Lyme patients on line and almost all have some people in their lives that we should be able to at least double the number of online signatures if we keep posting to various Lyme groups.

About the paper petition (attached). It's a little different from the online petition because it deals with how this issue can ultimately effect everyone. Paper petitions should be kept separate (people should not sign online AND on paper). Send them to the address on the bottom of the petition.

When you go out to collect signatures take both the cover sheet and the sheet with the signature lines with you. People may want to read the entire issue on the first page and then sign the second which has an abbreviated version on the top.

This is really important. Please send each page in as soon as you're finished with it since we need to keep letting the NGC know that the number of signatures is rising.

Thanks,
Ellen Lubarsky, NY

1 of 1 File(s)

petition.pdf

#612

From: Phyllis Mervine <pmerv@...>
Date: Wed Feb 29, 2012 6:29 pm
Subject: Listen Online to Diane Rehm show on LD

kmnehlatc

Listen and leave your comments at

http://thedianerehmshow.org/shows/2012-02-29/diagnosing-and-treating-lyme-disease

Guests

Dr Paul Auwaerter

associate professor of medicine, Johns Hopkins University School of Medicine
and clinical director, division of infectious diseases.
Johns Hopkins Hospital

Dr. Samuel Shor

internist, private practice and associate clinical professor at George Washington University.

Dr. Brian Fallon

professor of clinical psychiatry.
director, Lyme and Tick-Borne Diseases Research Center. and
director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine
Columbia University

Stephen Barthold

professor,department of pathology, microbiology and immunology
Center of Comparative Medicine at the School of Veterinary Medicine, University of California, Davis

#613

From: Phyllis Mervine <pmerv@...>
Date: Tue Mar 6, 2012 7:43 pm
Subject: Re: Excellent Lyme article in the Washington Post

kmnehlatc

NY activist Ellen Lubarsky came up with a great idea. She wrote:

You all realize what this means, don't you? It means you now have another excuse to write to your email lists. Send them this article and again ask them to sign the petition at www.lymedisease.

org :-)
Ellen

Here's the original:

The doctor diagnosed chronic Lyme disease, but many experts say it doesn’t exist

By Laurie McClellan, Monday, March 5, 4:47 PM

I don’t believe in the Loch Ness monster. I don’t think government scientists are autopsying aliens in Area 51 or plotting a vast conspiracy from a bunker at the North Pole. But for the past two years, I’ve lived through an experience that has felt, at times, like a real-life episode of “The X-Files.”

What happened is this: My husband became frighteningly, mysteriously ill. And when two doctors finally fit the puzzle pieces of his symptoms together, we discovered that, according to medical authorities, his disease does not officially exist.

http://www.washingtonpost.com/national/health-science/the-doctor-diagnosed-chronic-lyme-disease-but-many-experts-say-it-doesnt-exist/2012/02/06/gIQA4aMHtR_story.html

#614

From: Phyllis Mervine <pmerv@...>
Date: Tue Mar 20, 2012 10:17 pm
Subject: "prophylactic treatment was totally ineffective when delivered ≥2days after tick removal."

kmnehlatc

Dear People,
Since 2001 the IDSA has been recommending preventive treatment of a single dose of doxycyline for tickbites under certain narrow conditions. Piesman et al. have just published a new article concluding that if the treatment is given as little as 24 hours after the bite, only 47% of the mice were cured. Piesman also concludes that "Prophylactic treatment was totally ineffective when delivered ≥2days (48hrs) after tick removal." The IDSA recommends treating if

Tick is estimated to have been attached for ≥36 hours (based upon how engorged the tick appears or the amount of time since outdoor exposure)
Antibiotic treatment can begin within 72 hours of tick removal

In the past 11 years, the misinformation has spread widely on the internet. Your mission, should you choose to accept it, is to seek out sites displaying the inaccurate information and ask them to correct it. I have prepared language below for you to use. Simply cut and paste. The quote is from the IDSA recommendations so it's likely to be quoted exactly on each website. Let's see if we can turn this around before another 11 years goes by. You will be saving lives.

To avoid unnecessary duplication, let us know when you do it and if you get any responses. I am doing http://www.uptodate.com/contents/patient-information-what-to-do-after-a-tick-bite-to-prevent-lyme-disease-beyond-the-basics
Guess who the editor is? Allen Steere. I found the emails for custom service, editorial, education, and media. I sent to all. It took a little while to figure it all out and to put this together, but it worked fine.

It will be easier for them to fix if you give the URL where the misinformation occurs.

It might be worth contacting newspapers and magazines that have published the info but you'll need to change the language a bit to encourage them to publish a new article based on the updated info. If they thought it was good the first time, they might like the correction, too.

Phyllis Mervine
LymeDisease.org

Please correct this misinformation on your website. [PUT THE URL HERE]

"If the person meets ALL of the above criteria, the recommended dose of doxycycline is a single dose of 200 mg for adults and 4 mg/kg, up to a maximum dose of 200 mg, in children ≥ 8 years"

In 2004 Zeidner et al. noted that the "sustained release" doxy was curative, but regular doxy only 43% effective. [ Antimicrob Agents Chemother. 2004 Jul;48(7):2697-9. Sustained-release formulation of doxycycline hyclate for prophylaxis of tick bite infection in a murine model of Lyme borreliosis.]

In 2008 Dolan et al. reported on the success of 14 days of exposure to antibiotic bait formulations..

Am J Trop Med Hyg. 2008 May;78(5):803-5.

A doxycycline hyclate rodent bait formulation for prophylaxis and treatment of tick-transmitted Borrelia burgdorferi.

Dolan MC, Zeidner NS, Gabitzsch E, Dietrich G, Borchert JN, Poché RM, Piesman J.

Abstract
The prophylactic and curative potential of doxycycline hyclate formulated in a rodent bait at concentrations of 250 and 500 mg/Kg was evaluated in a murine model of Lyme borreliosis. Both bait formulations prevented tick-transmitted Borrelia burgdorferi infection in 100% of C3H/HeJ mice (N = 16), as well as cured acute, established infection in mice (N = 8) exposed to bait for 14 days. Spirochete infection was cleared in 88.9% to 100% of infected nymphs feeding on mice fed 250 and 500 mg/Kg antibiotic bait formulations, respectively. These data provide evidence for exploring alternative techniques to prevent transmission of Lyme disease spirochetes.

This month Peisman and Hoigaard note that "prophylactic treatment was totally ineffective when delivered ≥2days after tick removal." [2 days = 48 hrs]

Ticks Tick Borne Dis. 2012 Mar 13. [Epub ahead of print]

Protective value of prophylactic antibiotic treatment of tick bite for Lyme disease prevention: An animal model.

Piesman J, Hojgaard A.

Abstract

Clinical studies have demonstrated that prophylactic antibiotic treatment of tick bites by Ixodes scapularis in Lyme disease hyperendemic regions in the northeastern United States can be effective in preventing infection with Borrelia burgdorferi sensu stricto, the Lyme disease spirochete. A large clinical trial in Westchester County, NY (USA), demonstrated that treatment of tick bite with 200mg of oral doxycycline was 87% effective in preventing Lyme disease in tick-bite victims (Nadelman, R.B., Nowakowski, J., Fish, D., Falco, R.C., Freeman, K., McKenna, D., Welch, P., Marcus, R., Agúero-Rosenfeld, M.E., Dennis, D.T., Wormser, G.P., 2001. Prophylaxis with single-dose doxycycline for the prevention of Lyme disease after an Ixodes scapularis tick bite. N. Engl. J. Med. 345, 79-84.). Although this excellent clinical trial provided much needed information, the authors enrolled subjects if the tick bite occurred within 3days of their clinical visit, but did not analyze the data based on the exact time between tick removal and delivery of prophylaxis. An animal model allows for controlled experiments designed to determine the point in time after tick bite when delivery of oral antibiotics would be too late to prevent infection with B. burgdorferi. Accordingly, we developed a tick-bite prophylaxis model in mice that gave a level of prophylactic protection similar to what had been observed in clinical trials and then varied the time post tick bite of antibiotic delivery. We found that two treatments of doxycycline delivered by oral gavage to mice on the day of removal of a single potentially infectious nymphal I. scapularis protected 74% of test mice compared to controls. When treatment was delayed until 24h after tick removal, only 47% of mice were protected; prophylactic treatment was totally ineffective when delivered ≥2days after tick removal. Although the dynamics of antibiotic treatment in mice may differ from humans, and translation of animal studies to patient management must be approached with caution, we believe our results emphasize the point that antibiotic prophylactic treatment of tick bite to prevent Lyme disease is more likely to be efficacious if delivered promptly after potentially infectious ticks are removed from patients. There is only a very narrow window for prophylactic treatment to be effective post tick removal.

#615

From: Phyllis Mervine <pmerv@...>
Date: Wed Mar 21, 2012 6:21 pm
Subject: "prophylactic treatment was totally ineffective when delivered ≥2days after tick removal."

kmnehlatc

Dear People,
This is an updated version that includes Betty Maloney, MD's published paper, omitted from my message yesterday. Use this one.

Since 2001 the IDSA has been recommending preventive treatment of a single dose of doxycyline for tickbites under certain narrow conditions. Piesman et al. have just published a new article concluding that if the treatment is given as little as 24 hours after the bite, only 47% of the mice were cured. Piesman also concludes that "Prophylactic treatment was totally ineffective when delivered ≥2days (48hrs) after tick removal." The IDSA recommends treating if

Tick is estimated to have been attached for ≥36 hours (based upon how engorged the tick appears or the amount of time since outdoor exposure)
Antibiotic treatment can begin within 72 hours of tick removal

In the past 11 years, the misinformation has spread widely on the internet. Your mission, should you choose to accept it, is to seek out sites displaying the inaccurate information and ask them to correct it. I have prepared language below for you to use. Simply cut and paste. The quote is from the IDSA recommendations so it's likely to be quoted exactly on each website. Let's see if we can turn this around before another 11 years goes by. You will be saving lives.

To avoid unnecessary duplication, let us know when you do it and if you get any responses. I am doing http://www.uptodate.com/contents/patient-information-what-to-do-after-a-tick-bite-to-prevent-lyme-disease-beyond-the-basics
Guess who the editor is? Allen Steere. I found the emails for custom service, editorial, education, and media. I sent to all. It took a little while to figure it all out and to put this together, but it worked fine.

It will be easier for them to fix if you give the URL where the misinformation occurs.

It might be worth contacting newspapers and magazines that have published the info but you'll need to change the language a bit to encourage them to publish a new article based on the updated info. If they thought it was good the first time, they might like the correction, too.

Phyllis Mervine
LymeDisease.org

Please correct this misinformation (based on a 2001 paper) on your website. [PUT THE URL HERE]

"If the person meets ALL of the above criteria, the recommended dose of doxycycline is a single dose of 200 mg for adults and 4 mg/kg, up to a maximum dose of 200 mg, in children ≥ 8 years"

In 2004 Zeidner et al. noted that the "sustained release" doxy was curative, but regular doxy only 43% effective. [ Antimicrob Agents Chemother. 2004 Jul;48(7):2697-9. Sustained-release formulation of doxycycline hyclate for prophylaxis of tick bite infection in a murine model of Lyme borreliosis.]

In 2008 Dolan et al. reported on the success of 14 days of exposure to antibiotic bait formulations..

Am J Trop Med Hyg. 2008 May;78(5):803-5.

A doxycycline hyclate rodent bait formulation for prophylaxis and treatment of tick-transmitted Borrelia burgdorferi.

Dolan MC, Zeidner NS, Gabitzsch E, Dietrich G, Borchert JN, Poché RM, Piesman J.

Abstract
The prophylactic and curative potential of doxycycline hyclate formulated in a rodent bait at concentrations of 250 and 500 mg/Kg was evaluated in a murine model of Lyme borreliosis. Both bait formulations prevented tick-transmitted Borrelia burgdorferi infection in 100% of C3H/HeJ mice (N = 16), as well as cured acute, established infection in mice (N = 8) exposed to bait for 14 days. Spirochete infection was cleared in 88.9% to 100% of infected nymphs feeding on mice fed 250 and 500 mg/Kg antibiotic bait formulations, respectively. These data provide evidence for exploring alternative techniques to prevent transmission of Lyme disease spirochetes.

In 2011 Wisconsin Journal of Medicine published a review detailing the failure of one-dose doxycycline prophylaxis and proposing an alternative, more effective treatment option. (Maloney, B. The management of Ixodes scapularis bites in the upper Midwest. WMJ. 2011 Apr;110(2):78-81; quiz 85.) The full text article is available at http://www.wisconsinmedicalsociety.org/_WMS/publications/wmj/pdf/110/2/78.pdf

This month Peisman and Hoigaard note that "prophylactic treatment was totally ineffective when delivered ≥2days after tick removal." [2 days = 48 hrs]

Ticks Tick Borne Dis. 2012 Mar 13. [Epub ahead of print]

Protective value of prophylactic antibiotic treatment of tick bite for Lyme disease prevention: An animal model.

Piesman J, Hojgaard A.

Abstract

#616

From: Phyllis Mervine <pmerv@...>
Date: Thu Mar 22, 2012 8:59 pm
Subject: RE: What to do after a tick bite to prevent Lyme disease (Beyond the Basics)

kmnehlatc

Paper petition REMOVE OUTDATED IDSA GUIDELINES FROM NGC FINAL 2.27.pdf

This is the reply I received after requesting one website to correct their information on prophylactic treatment for tick bite.

They don't care if the guidelines are based on incomplete or faulty information. They don't care if their recommendations will cause hundreds or thousands of avoidable cases of Lyme disease.

This serves to illustrate once again the importance of pressuring the NGC to delist the IDSA guidelines from their website. If you haven't signed yet, do it today. Remind friends and family to sign. Again! and again! If you have patients, print out the paper copy and make it available in your waiting room. Let's see if we can hit 20,000 signatures by the end of March. It's doable - we're up to almost 18,000.

http://www.lymedisease.org/petitionscript/index.php

Paper petition attached for your offices, neighborhoods, clubs, places of worship etc.
It's up to you!
Phyllis Mervine
LymeDisease.org

-------- Original Message --------

Subject:	RE: What to do after a tick bite to prevent Lyme disease (Beyond the Basics)
Date:	Thu, 22 Mar 2012 12:06:01 -0400 (EDT)
From:	ATHORNER <EDITORS@...>
Reply-To:	ATHORNER <EDITORS@...>
To:	pmerv@...

Dear Phyllis Mervine,

Thank you for your feedback. Our recommendation regarding antimicrobial prophylaxis against 
Lyme disease is based upon human clinical trial data and is consistent with the Infectious 
Diseases Society of America guidelines. The studies you cited were murine studies; 
recommendations for patients are ideally based upon studies in humans. 

Sincerely,
Anna Thorner, MD
Deputy Editor, Infectious Diseases
UpToDate



From: pmerv@...

Please correct this misinformation on your website. 

http://www.uptodate.com/contents/patient-information-what-to-do-after-a-tick-bite-to-prevent-
lyme-disease-beyond-the-basics 

"If the person meets ALL of the above criteria, the recommended dose of doxycycline is a single 
dose of 200 mg for adults and 4 mg/kg, up to a maximum dose of 200 mg, in children ? 8 years" 

In 2004 Zeidner et al. noted that the "sustained release" doxy was curative, but regular doxy 
only 43% effective. [ Antimicrob Agents Chemother. 2004 Jul;48(7):2697-9. Sustained-release 
formulation of doxycycline hyclate for prophylaxis of tick bite infection in a murine model of 
Lyme borreliosis. ] 

In 2008 Dolan et al. reported on the success of 14 days of exposure to antibiotic bait 
formulations.. 

Am J Trop Med Hyg. 2008 May;78(5):803-5. 
A doxycycline hyclate rodent bait formulation for prophylaxis and treatment of tick-transmitted 
Borrelia burgdorferi. 
Dolan MC, Zeidner NS, Gabitzsch E, Dietrich G, Borchert JN, Poché RM, Piesman J. 

Abstract 
The prophylactic and curative potential of doxycycline hyclate formulated in a rodent bait at 
concentrations of 250 and 500 mg/Kg was evaluated in a murine model of Lyme borreliosis. Both 
bait formulations prevented tick-transmitted Borrelia burgdorferi infection in 100% of C3H/HeJ 
mice (N = 16), as well as cured acute, established infection in mice (N = 8) exposed to bait for 
14 days. Spirochete infection was cleared in 88.9% to 100% of infected nymphs feeding on mice fed 
250 and 500 mg/Kg antibiotic bait formulations, respectively. These data provide evidence for 
exploring alternative techniques to prevent transmission of Lyme disease spirochetes. 

This month Peisman and Hoigaard note that "prophylactic treatment was totally ineffective when 
delivered ?2days after tick removal." [2 days = 48 hrs] 

In 2011 Wisconsin Journal of Medicine published a review detailing the failure of one-dose 
doxycycline prophylaxis and proposing an alternative, more effective treatment option. 
(Maloney, B. The management of Ixodes scapularis bites in the upper Midwest. WMJ. 2011 Apr;110(2):
78-81; quiz 85.) The full text article is available at http://www.wisconsinmedicalsociety.org/WMS/publications/wmj/pdf/110/2/78.pdf

Ticks Tick Borne Dis. 2012 Mar 13. [Epub ahead of print] 
Protective value of prophylactic antibiotic treatment of tick bite for Lyme disease prevention: 
An animal model. 
Piesman J, Hojgaard A. 

Abstract 

Clinical studies have demonstrated that prophylactic antibiotic treatment of tick bites by Ixodes 
scapularis in Lyme disease hyperendemic regions in the northeastern United States can be effective 
in preventing infection with Borrelia burgdorferi sensu stricto, the Lyme disease spirochete. A 
large clinical trial in Westchester County, NY (USA), demonstrated that treatment of tick bite 
with 200mg of oral doxycycline was 87% effective in preventing Lyme disease in tick-bite victims 
(Nadelman, R.B., Nowakowski, J., Fish, D., Falco, R.C., Freeman, K., McKenna, D., Welch, P., 
Marcus, R., Agúero-Rosenfeld, M.E., Dennis, D.T., Wormser, G.P., 2001. Prophylaxis with single-dose 
doxycycline for the prevention of Lyme disease after an Ixodes scapularis tick bite. N. Engl. J. Med. 
345, 79-84.). Although this excellent clinical trial provided much needed information, the authors 
enrolled subjects if the tick bite occurred within 3days of their clinical visit, but did not analyze 
the data based on the exact time between tick removal and delivery of prophylaxis. An animal model 
allows for controlled experiments designed to determine the point in time after tick bite when 
delivery of oral antibiotics would be too late to prevent infection with B. burgdorferi. Accordingly, 
we developed a tick-bite prophylaxis model in mice that gave a level of prophylactic protection 
similar to what had been observed in clinical trials and then varied the time post tick bite of 
antibiotic delivery. We found that two treatments of doxycycline delivered by oral gavage to mice on 
the day of removal of a single potentially infectious nymphal I. scapularis protected 74% of test 
mice compared to controls. When treatment was delayed until 24h after tick removal, only 47% of mice 
were protected; prophylactic treatment was totally ineffective when delivered ?2days after tick 
removal. Although the dynamics of antibiotic treatment in mice may differ from humans, and 
translation of animal studies to patient management must be approached with caution, we believe 
our results emphasize the point that antibiotic prophylactic treatment of tick bite to prevent 
Lyme disease is more likely to be efficacious if delivered promptly after potentially infectious 
ticks are removed from patients. There is only a very narrow window for prophylactic treatment to be 
effective post tick removal. 


________________________________________
What to do after a tick bite to prevent Lyme disease (Beyond the Basics)
 
Author
Linden Hu, MD	Section Editor
Allen C Steere, MD	Deputy Editor
Anna R Thorner, MD
 

This e-mail message may contain confidential and/or privileged information. If you are 
not an addressee or otherwise authorized to receive this message, you should not use, 
copy, disclose or take any action based on this e-mail or any information contained in the 
message. If you have received this material in error, please advise the sender immediately 
by reply e-mail and delete this message. 

Thank you.

1 of 1 File(s)

#617

From: Phyllis Mervine <pmerv@...>
Date: Sun Apr 1, 2012 1:06 am
Subject: Fairfax County, VA Painting Its Deer Pink

kmnehlatc

Fairfax painting its deer shocking pink; will the shame finally make them go away?

By Tom Jackman

Fairfax Wildlife Biologist Vicky Monroe displays the day-glo pink pesticide that will show up on deer and any other animal who visits the county's new feeders. The ridicule from their friends in the forest could be intense. (Tom Jackman - The Washington Post) Deer: the scourge of NoVa. They tromp through our backyards, they crash through our windshields, they eat our shrubbery. Worse, they transport the dreaded blacklegged tick from the woods to our neighborhoods, where the ticks then hop off the deer, hop on to us and give us Lyme disease, red bull’s-eye scars and other Very Bad Things.

So Fairfax County is undertaking an innovative program to study tick infestations. They’re placing deer feeding stations at 20 points in two parks, Sully Woodlands and Hemlock Overlook. When the deer come to eat the corn at the stations, they will rub against rollers treated with a pesticide that will kill ticks. And to distinguish the treated deer from the untreated, the pesticide is colored day-glo shocking pink.

#618

From: Phyllis Mervine <pmerv@...>
Date: Thu Apr 12, 2012 10:33 pm
Subject: Find Dr Phil Lyme show

kmnehlatc

Dr. Phil is devoting part of his show tomorrow to Lyme disease. Not a regular viewer? Here's how to find what channel it's on:

http://www.drphil.com/shows/listing/

Select your state
Browse the listings for the channel and air times

If you want to verify the information you can

Click on the URL of whichever station you prefer and then
Look for the program schedule on the station's website.

It's tomorrow and it looks like it will be good! We'll be talking about it on Touched by Lyme and Facebook. Dorothy will send another notice around shortly. Stay tuned!

#619

From: Phyllis Mervine <pmerv@...>
Date: Fri Apr 13, 2012 6:10 pm
Subject: more help finding the RIGHT Dr Phil show

kmnehlatc

Thanks to Melissa in California for this tip.

It is Episode # 1804. There are a LOT of Dr. Phil episodes shown every day,
throughout the day on lots of stations, so look for Ep. 1804, "A woman wants
the right to euthanize her severely disabled offspring; chronic Lyme
disease." The original air date is 04/13/12

#620

From: Phyllis Mervine <pmerv@...>
Date: Sun Apr 15, 2012 8:06 am
Subject: If you missed the Dr Phil show on Lyme

kmnehlatc

http://lymedisease.org/news/lyme_disease_views/drphil-lyme-episode.html

go here

NEWS: Watch Dr. Phil Lyme episode here

#621

From: Phyllis Mervine <pmerv@...>
Date: Mon Apr 16, 2012 11:22 pm
Subject: Petition just shy of 20,000!

kmnehlatc

if you haven't signed yet, you might get to be the 20,000th!
http://www.lymedisease.org/petitionscript/index.php

I am going to try to get a screen shot of the historic moment (if you get one, please send it to me in case I miss)