Resource List: Lyme Disease

By Carey Goldberg June 25, 2012

Approximate distribution of the Blacklegged tick, commonly referred to as the deer tick (CDC)

Click on the links below for more comprehensive information about Lyme disease.

General:

– From the CDC: Patient information, general Lyme disease topics and FAQs

– From the state of Massachusetts: Website on tickborne diseases and an overview of tickborne diseases

CLICK TO ENLARGE: Relative sizes of several ticks at different life stages (CDC)

– From the Legislature: Lyme disease in Massachusetts: a public health crisis

Prevention:

– Tick Encounter

– From the state: Personal protection against ticks and Ticks in your yard: Here’s what to do

A Sampling Of Local Sites:

– Lincoln Tick Task Force

– Martha’s Vineyard Boards of Health: Tickborne illness

– Brewster Lyme disease information

Alternative/Advocate/Patient Support Groups:

– International Lyme and Associated Diseases Society (created as an alternative to the mainstream Infectious Diseases Society of America)

– Sturbridge Lyme Awareness of Massachusetts (S.L.A.M) (LymeNet lists other Massachusetts support groups here.)

CommonHealth co-host Carey Goldberg has been reading widely on Lyme disease. Some of her favorites:

It came out almost 10 years ago, but Beth Israel Deaconess Medical Center’s Dr. Jonathan Edlow spins a fascinating scientific yarn in “Bull’s-Eye: Unraveling the Medical Mystery of Lyme Disease.”
Pamela Weintraub is a leading science journalist, executive editor of Discover magazine, and her whole family has been through a nightmarish Lyme disease journey. Her 2008 book, “Cure Unknown: Inside the Lyme Epidemic,” is billed as “the most comprehensive account of the past, present and future of Lyme disease,” and it weaves in harrowing personal medical accounts as well.
“The Widening Circle: A Lyme Disease Pioneer Tells Her Story” is an oldie but goodie: A first-person narrative by Polly Murray, the artist and mother of four in Lyme, Conn., whose activism was critical in getting the disease on the map. It’s also just mind-boggling what she and her family went through.

Tick 101: From the American Lyme Disease Foundation:

Readers, what are your suggestions?

https://identify.us.com IdentifyUS

Information and services about ticks formerly hosted by the Harvard School of Public Health are now available at https://identify.us.com. This includes rapid, independent, confidential and expert evaluation of ticks as well as of digital images that can be submitted securely online.
Richard Pollack, PhD (IdentifyUS LLC)
William Wiegman

It will take a multi-faceted antibiotic protocol to cure anyone of Lyme in a short, respectable amount of time. I have cured myself twice, after being rebitten in March of this year. The first time in 2009 it took my doctor over a year and a half to knock it out.

If anyone is interested in knowing what I did the second time I would be willing to share the protocol I used to go back to work in only 3 weeks hanging and finishing two plaster ceilings in old houses I restore.

I’m 63 and have a degree in sub-cellular microbiology from IU Bloonigton, by the way.
- Mike Ryan
  
  William, I would love to hear more about your protocol. Can you embellish or email me at mryanone@gmail.com?
- Pam Rose
  
  William, I also would like to learn about your protocol. Would you either post it here or send it to my email at prose.1220@gmail.com? Thank you!
Pam Rose

I’m attaching a link to a must-read article published in Yankee Magazine on the origin of Lyme Disease. It is eye opening and extremely disturbing. Please read it!

http://www.yankeemagazine.com/issues/2007-07/features/lymecountry/all
p_cayer

My first suggestion would be to remove any link to the American Lyme Disease Foundation (ALDF). They are a front for the IDSA, the organization responsible for worthless guidelines that are literally killing people and causing horrific suffering and disability. There should be no credibility given to this group.
- Tebo_tc
  
  I totally agree. They are a non-profit facade for the authors of the original guidelines.
  
  Here are some highlights about the guideline authors -* The vector for Lyme disease (Ixodid ticks) was “discovered” by a biowarfare defense expert (Allen Steere) from the CDC’s Epidemic Intelligence Service (EIS).
  
  * The Lyme bacterium was first propagated in cell cultures by another CDC EIS biowarfare expert (Alan Barbour), in a biowarfare lab.
  
  * The Lyme Epidemic is being perpetuated by researchers affiliated with the CDC’s biowarfare defense unit (EIS),
  
  * Gary Wormser is the lead author on the fraudulent treatment guidelines published by the IDSA, which prevent patients from getting effective treatments. In his spare time, he lectures as an expert on biowarfare.
  
  * The research study Wormser used to justify his position that Lyme disease is readily cured with short courses of antibiotics was a fraudulent study authored by Mark Klempner, a CDC EIS agent who also now directs a biowarfare lab, at Boston University.
  
  * The first vaccine against the disease was developed and licensed by a defense contractor (Yale Corporation) that worked closely with Plum Island biowarfare lab on biowarfare and vaccine agents.
  
  * The lead investigator for the vaccine field trials (Steere) was a Yale and EIS alumnus who has done everything in his power to deny effective antibiotic treatments to Lyme victims, so that the immune response to the disease could be mapped out in untreated controls.
  - Tebo_tc
    
    Also, the disease was actually “discovered” by Willy Burgdorfer. The same guy that was working with variations of bacterial weapons using ticks as vectors in 1951, that he eventually discovered in 1982.
    
    whadda coincidence!!
Tebo_tc

http://www.youtube.com/watch?v=oEI8cqVbDbo
Jasperjennifer

The CDC also recognises Northern California as endemic for Lyme disease, even though it is not displayed in the above map. It is here, and I contracted Lyme disease in the Santa Cruz Mountains. Read the research and articles on Dr. Robert Lane’s (UC Berkeley) tick studies. (The man also worked with Dr. Burgdorfer, discoverer of Lyme disease bacteria, years ago.)
- Solasdesigns
  
  There is Lyme Disease in all 50 states. When is The American Medical Community going to wake up?? When more of us die??
Manduhai

The web site at the Columbia Center for Lyme and Tick Bron Disease is a valuable resource for patients and doctors. They have the most comprehensive, scientifically even handed information, including summaries of their own and other relevant research: http://www.columbia-lyme.org
Alexander Davis

The
Lyme Disease epidemic has been caused by the deer epidemic. Because of their large size, deer are the
primary host of the adult deer tick, which requires a sizeable blood meal from a
larger mammal for reproduction. The adult deer ticks, each of which lays
thousands of eggs, are spread all around by the deer because of their large
range. These eggs hatch into larvae and then nymphs which feed primarily on
small mammals like mice. Eliminating the
deer host interrupts this cycle. Studies
in Connecticut and elsewhere have shown that decreasing the deer population
results in a decrease in the incidence of Lyme Disease : (see pages 2-4) http://www.ct.gov/dep/lib/dep/wildlife/pdf_files/game/urbandeer07.pdf
Burdge52

My wife spent years trying to find out what was wrong with her!It’s time to look to someone besides Allen Steere who has FAILED at this job of doing something about Tick borne diseases!I know of no one that just has Lyme and has no other infections!He cares more about his patents then the people suffering with these diseases.Google ( Joy Burdge youtube ) and ask Allen Steere what he would have done for my wife!NOTHING! SHE WOULD HAVE BEEN DEAD UNDER THE CARE OF DOCTORS LIKE HIM!!!!!Or go to the link below and see what 100′s of thousands of us have gone through.http://www.youtube.com/watch?v=r0lwBuFAI20the Lyme testing picks up about 42% of the cases and that is OK by his standards!He should hang his head in SHAME!!!!There is little to no compassion for these people.Ask Bill Chinnock of BRUCE SPRINGSTEEN’S E Street Band!Oh thats right he committed SUICIDE after struggling with Lyme disease for years!Maybe you can ask his wife they lived in Maine.Congressman Chris Smith NJ is calling for a Mannhattan type project to get to the bottom of the Lyme disease MESS!
WE AGREE!!!!!!!!!!!!!!!STOP GOING TO THE SAME PEOPLE! YOU CAN’T TRUST THEM THEY HAVE DONE NOTHING SO FAR AND THE DISEASES KEEP SPREADING FASTER AND FASTER!!!ASK ALLEN STEERE ABOUT ALL THE LAW SUITS WITH HIS VACCINE!ASK WHAT HE DID IN EUROPE WITH THE LYME TESTING???KATHLEEN DICKSON KNOWS! AND SO DOES ALLEN!I REFUSE TO CALL HIM DOCTOR AFTER ALL THE SUFFERING HE HAS BEEN A PART OF!37 YEARS GOING TO SOMEONE THAT HAPPENED TO BE SENT TO LYME CONNECTICUT IN 1975!PLEASE GIVE US A BREAK.
ASK ALLEN WHAT IS OspA? AND WHAT DOES IT DO?IN WRITEING TELL IS WHAT IT IS, AND WHAT IT DOES!!!!AND SUMIT IT TO THE NATION AND SIGN IT!!!!!
Shannon

A DVD set offered by Lymedisease.org formerly known as CALDA (California Lyme Disease Assoc.) featuring LLMD Dr. Joesph Burrascano – most helpful for being able to identify the co-infections that accompany/complicate Lyme Disease. The political debate over Lyme looks like it is going to go on for a long time so since we’re going to have to heal ourselves – I highly recommend these videos.

http://lymedisease.org/news/lyme_disease_views/dvd.html
- Dr_Alex
  
  Please, do not buy or watch this video. It is full of non-scientific assumptions. Just plain crap.
  - RNwithLyme
    
    You know, Dr_Alex, you’ve got a lot to say on this topic in the comments this week. Who are you, are you an MD–if so are you an IDA member–and what’s your story? You don’t seem at all sympathetic to Lyme sufferers. It seems more like you’re a flamethrower.
Lou

How about free ranging chichens for tick control instead of pesticides?
Lymeticktest

I own and operate MassDeerService, Inc. We are now distributing the first at-home test kits for determing if the tick that just bit you is carrying the bacteria that cause Lyme. Please visit http://www.lymeticktest for more info.
Solasdesigns

Hey, Dr. Alex, how many patients do you have with Lyme???? I have gone thru misdiagnosis for many years because of a mainstream american medical community that won’t look at Lyme or tells you that you are cured after a short course of antibiotics. I do not have MS, ALS, Parkinson’s, Fibro, or Lupus. I am now in late stage chronic lyme. Dr. Burrascano’s work & the work of many others has helped many of us. The sad part is that I was bit during the 12 years I lived in NY’s Hudson Valley & my NEW YORK doctor missed it.
Kayjay

Get your hands on some APEX and stop the Lyme in it’s tracks.
22 years and 2 near deaths,of this crap ,and I am finally feeling much better.
Not BS!
Call Schachter Clinic for a testimonial..Rockland Cty, NY OR call me 845 225 2203
Jim S
FDNY ret’d
and NO, I am not looking for anything,not money,not kickbacks NADA! If it works and you feel better, donate to the FF Michael Lynch Foundation FDNY! If ya feel like it.
Think Again

Lyme patients are well-advised to use caution in selecting
treatments, or specialty providers and organizations for information about the
diagnosis and treatment of infectious diseases. Many of the
self-proclaimed ‘Lyme-literate’ medical doctors may not be adequately
trained in the diagnosis and treatment of such illnesses, as they are not
infectious disease specialists. This controversy extends far beyond the
use or mis-use of antibiotics. Many dangerous and unproven remedies are
being skillfully marketed, targeted towards vulnerable patients and their
families.

One can use the Federation of State Medical Boards website to look-up any
recent and publicly available medical board findings about physicians, nurses
and other providers practicing in the United
States. There is a great deal of
misrepresentation throughout the Lyme community as to the reason certain
‘Lyme-literate’ physicians are being investigated by their peer-run medical
boards. You should read the board findings for yourself and make your own
decisions.

Use caution in the selection of other resources for information and support as
well. Patient support organizations and meetings may be quite similar to
the highly criticized Direct-to-Consumer advertising of pharmaceutical
companies and similar commercial and business interests.

Most importantly, remember to use caution when reading anything – keep in mind
that anyone can post online about anything, as well as misrepresent themselves
as a medical or science expert when they are not.

The continuing Lyme series by WBUR is a good starting point for disseminating
correct information to the public. Public awareness and education into
the methods used to properly diagnose and treat Lyme and similar infectious
diseases is certainly appreciated.
- http://profile.yahoo.com/FMC567LV2V5THDC7AWDJZSZ3NM Alexander
  
  In the past, experts were respected. However, recently it’s been shown that there has been profiteering and conflicts of interest. CT Attorney General Blumenthal noted that physicians writing the legal Lyme treatment guidelines were on the payroll of the insurance industry, drug companies, etc. These guidelines allowed the insurance companies to profit by denying coverage. If a physician shares a patent on a vaccine and then pushes this unsafe vaccine, does that inspire public trust?
- http://TBIJournal.com/ VulnerableButRational
  
  Two years ago I attended a conference organized by the NIH and Institutes of Medicine on Gaps in the understanding of Lyme Disease. Oddly, they precluded the topics of Lyme Diagnosis and Treatment, as too controversial. A single panel, including Dr. Fallon and Luft obliquely touched on the topic. I had the opportunity to ask the panel a question and I asked ” Is there a gap in our understanding of a diagnostic protocol for disseminated (spread beyond the bite site) Lyme Disease. How can so many patients seek help from a GP, neurologist, rheumatologist, and Infectious Disease specialist and none of those practictioners be able to confirm that they are even ill, let alone identify disseminated Lyme or Babesiosis?” The panel’s response? They broke into outright laughter, eventually responding that “Everyone knows those (the standard evaluation protocols) don’t work”.
  
  Everyone apparently except the 12 MDs I had been evaluated by, several of whom assured me I absolutly did not have Lyme or any other bacterial infection. These included a senior ID specialist at a local teaching hospital, an ID specialist listed as one of the top 100 MDs in the Washington DC area, the director of a very large neurology group, etc. A practicing physician who is a family member was the only clinician to rule out a psychological basis for my illness and order the tests necessary to diagnose Lyme.
  
  Think again refers to patients such as myself as vulnerable. I am. But I’m also rational. The IDSA failed to develop diagnostic protocols and lab tests which could be trusted to identify that I was even physically ill, although I described myself as unable to perform a single routine task in daily living.   The IDSA failed to develop protocols and tests that could identify Lyme Disease, although I later was found to meet CDC standards for Lyme. IDSA protocols failed to look for co-infections when I did not recover from Lyme. How can I trust them to be able to determine whether Lyme and Babesia persist in me after treatment? Trusting the IDSA isn’t rational for me.
  
  WBUR’s series on Lyme is a valuable community resource.   But I encourage anyone who has been bitten by a tick to IMMEDIATELY learn about the different perspectives in the Lyme Wars. Prepare yourself to discuss diagnosis and treatment options with your initial clinician in detail. Your clinician has already chosen a side and you deserve to know which one it is during your first discussion. If these illnesses are not stopped early, the diagnosis and treatment challenge you face is huge. If your MD “rules” out Lyme or Babesia, ask for the specific reason. Do your own research on the point and decide how to proceed.