The Devastation Of Lives And Lies - LymeDisease

Todd Meese How about a cure for Lyme disease?Actually let's start with some honesty about thedisease.Joanne Drayson An honest review of the Lyme DiseaseGuidelines looking at the science presented at the IOMworkshop and acknowledging that all is not knownabout this emerging complex disease with it's many co‐infections.Laurie Damsell Fahey The FiveThousand or so of us on Facebookwith Chronic Lyme Disease tohave treatment options.Jaisibel Sullivan Some honestyand understanding about Lymewould be at the top of that list,thanks.Marcella Rosenberg Lessproliferation of drug resistantmicroorganisms.Jacqi Euler Honesty about LymeDisease and less restrictions onthe doctors who treat patientswith Chronic Lyme!John Coughlin Explain to us why we are so sick and youcan't tell us anything but make up labels and say thereis no cure. How about all those that are slippingthrough the cracks because of your guidelines. Docs areafraid to over diagnose Lyme so they do the exactopposite and send people home still sick! We needchange too many suffering now to ignore anymore.Cristopher Yulish I would like to seeall of the doctors who drafted the2006 Lyme Guidelines exiled fromthe Society and barred fromMedicine for conflicts of interest.They have put private and businessinterests ahead of the publicinterest. This is unforgivable.Redeem yourself and start fresh byhelping the thousands who aresuffering with a disease they can getno recognition for due to thedamage from a small tyrannicalgroup of "experts."Kim Tarbox There is atremendous need for IDSA toretract the degradation of an illpeople and admit that your duediligence is incompleteregarding Lyme. Reevaluate theoath prior to administration ofMD licensing.Kim Tarbox Preferably before Idie?Gina Lickliter I'd like to see areevaluation of your stance onChronic Lyme disease.sickpatients shouldn't be treatedwith the suspicion, resistance,and ridicule I faced whenseeking treatment with one ofyour physicians. I think it's timefor some real open‐mindeddiscussion of this topic, giventhe rise of tick‐borne cases thatHAVE been documented.Howmany have slipped through thecracks?Madison Lewis Change in yourTrain doctors to help those who arestance against the existence andsick, educate the public withtreatment of Chronic/LatentLyme. Far too many people haveaccurate information and developdied and are suffering severely assome real testing methods so no onea result of the misinformationelse has to suffer again.you've put out. CorrectCristopher Yulish I would like toyourselves before you lose allsee all of the doctors whorespect from the Medicaldrafted the 2006 LymeCommunity. The film/dvd 'Eyes Wide Open', openedGuidelines exiled from the Society and barred frommany eyes to your links to insurance companies. BeMedicine for conflicts of interest. They have put privateand business interests ahead of the public interest. Thisabout True Medical Fact. This is Medicine. This is notis unforgivable.about money and politics.Lori Sullivan‐Mangrum Better guidelines for treatmentof late stage Lyme Disease. More Lyme Literate Doctors.Doctors to have free reign to treat Lyme according totheir patients, no one person has the same DNAtherefore how can we all respond the same totreatment?Lisa Calista Botto More Lyme disease awareness. It tookthree years to be free of my Lyme disease. This insanityneeds to be addressed.Redeem yourself and start fresh by helping thethousands who are suffering with a disease they can getno recognition for due to the damage from a smalltyrannical group of "experts."Train doctors to help those who are sick, educate thepublic with accurate information and develop some realtesting methods so no one else has to suffer again.

Diane Lyme Ballou Admit the truth about Chronic LymeDisease and allow doctors and patients to makeeducated decisions on how they should be treated forthis devastating disease.Jill V. Easton Admitting that tick‐borne and insect‐bornediseases are in all 50 states, that it is not just an EastCoast disease. I was bitten in San Diego, California, by atick in a residential area while standing on cement andcontracted Lyme, Babesia Duncani, Ehrlichia,Anaplasma, Bartonella. My elderly father was bittenfour years later by a mosquito in San Diego and gotLyme and Bartonella.Jennifer Lauren Bailey Robins acknowledgement ofchronic Lyme, fulfillment of the hippocratic oath, andsubstantial and reasonable treatment to those sufferingfrom chronic Lyme and its co‐infections.I would like the IDSA to return to me my life savings of 400,000, that I have used to pay out‐of‐pocket medicalexpenses, 9 years of suffering from disseminateddiseases, my successful advertising career, my athleticprowess, my health, my hope to get married, my looks,my ability to do the simple things in life that others takefor granted ‐ all because the head of Infectious Diseasesat one of the largest medical centers in San Diegorefused to believe that Lyme Disease exists in SanDiego, even though I had seen the ticks, had an EMrash, had a CDC‐positive Western Blot, was alreadyresponding to the few antibiotics I could get fromanother doctor, and in fact, he had seen a Lyme patientthree weeks before me and dismissed her with as muchignorance and arrogance as he dismissed me.Naomi Rachamim An honest evaluation of the scienceand evidence of chronic Lyme. A look at what we aspatients have been suffering for years. Cristopher, I likeyour comment about a new board with members whodo not have conflict of interest.Amber Gipe For some understanding and support ofChronic Lyme Disease and for us who actually sufferfrom Lyme disease to no longer go bankrupt in hopes ofgetting better!!! we need awareness and bettertreatments!! dont ask what society wants unless yourFINALLY ready to listen and make a change!!! and p.s.let Lyme doctors treat the way they feel is necessary, ifwe are willing to put our lives in their hands then whytry so hard to stop us/them!I pray that none of you ever has to endure what we do.If you've ever had a pet, ever walk on grass, ever dogardening, ever walk anywhere, sit under a tree or aresimply in the wrong place at the wrong time, each ofyour doctors and their family members are at risk to gothrough what we go through due to your guidelines.Mallori Margaret educate the public! i was sick withLyme disease & co‐infections for 22 years beforeknowing what was wrong with me. i'm 26 now & i'mbarely able to work. my quality of life is a fraction ofwhat it should be & i'm considered more functionalthan most who have late stage Lyme disease. becausedoctors are ignorant, i turned to holistic medicine & it'ssaved my life! i have a long way to go but i can't helpbut think how much easier this would've been ifeducation was available. to me, my doctors, my family.Madison Lewis ditto on the 'Exhile from the Society andbarred from Medicine' re: the drs who drafted the 2006Lyme Guidelines!!Bambi Albert to be given options and the right tochoose how we want to be treated for CHRONIC Lymedisease.Jill Justiss I would like to see appropriate treatment forthose with chronic Lyme disease and a stop to thepersecution of Lyme doctors who dare to treat thesepatients with long term antibiotics.Christy Hudson To get a diagnosis for Lyme Diseasebefore 6 yrs, a close encounter with death and 50k later.Peter von Tiesenhausen To no longer marginalize thoseafflicted by Lyme disease and related Vector BourneInfectious Diseases. Please throw out your existingguidelines pertaining to this now and have some thatwill actually help people. Those people I'm makingreference to, desperately need your support.Bambi Albert We have told you enough times IDSAwhat we want, why don't you stop asking and dosomething?Benedetta Di Lyme More research and support fordiagnosing and treating Lyme disease and other relatedtick infections.Nicole Newell it would be great to see you acknowledgethat chronic Lymes exists and let drs know it is ok todiagnose and treat ppl who have it.i cannot even get a9

to if not work then at least wakeup in the morning &have a day that I can even clean my home withoutwondering if I will be hospitalized, a dream that doesn'tturn into a nightmare & be able to take a walk even justto check my mail without the possibility of fainting &then going unconscious for hours, and of course thereality that I may become a statistic & have it take medying & an autopsy to finally discover what I had.diagnosis for it even tho i have tested positive for itthree times i am told instead that i have everything else.instead of being treated i am pushed away with notreatment at all.how many years am i and othersexpected to suffer with this disease while you turn yourback and do nothing to help.Karie Thulon Klim Please do not delay in reforming thepolicy on treatment for Chronic Lyme Disease. Be sureto include all of the new and growing body of scientificresearch.I've had Lyme since the late summer or early fall of1969 when i was only 6 yrs. old from a tick bite, the tickwas imbedded in my head for days before my momactually realized it was a tick & not a scab from a bumpon my head. Plus having multiple positive testsincluding the Elisa & western blot. And then maybesomeday it doesn't take over 40 yrs. to get a Lymedisease diagnose. This was only a little over 2 yrs. ago.I've been very sick since the beginning of 1991 when allof my hopes & dreams were stolen from me. I eventried to continue my education & work until the end of2001. I'm only 48 yrs. old & deserve a life as does thethousands that are begging for you help. Each yearmany Lyme suffers die & some of them don't evenknow they have this disease so all we ask is to berecognized & counted.Tom Morton Wholeheartedly agree with Mr Yulish'scomments about Lyme.Tom Morton Speaking as a physician it is striking andsad to realize how much this issue is squelched bymedia outlets.Karie Thulon Klim I waited for years to have thisscourge of an illness recognized. It's time to payattention to the suffering, revise the guidelines, and toprogressively integrate research as new informationbecomes available.Jennifer Middleton I suffered for 18 years before beingdx'd in May. I lost the most productive years of my life. Iam only 7 months into treatment and still so very sick. Itis time to admit your mistakes and become a place forhealing and restoration of all of us who suffer. This isthe least you should do.Mitch Gordon .and my comments are based on beingmarried to a Lyme sufferer of 8 or 10 yearsrunning.whose life has been saved and graduallyimproved by a Lyme literate naturopathic doctor, whileeveryone at our HMO who has supposedly tried toaddress her Lyme and babesia based on your garbageLyme guidelines has been ineffective, ignorant anddismissive.Mitch Gordon Stop pretending that your guidelines arebased on science and knowledgeable medicaltreatment. Your guidelines document is full ofignorance and deliberate lies designed to pander to theinsurance and drug industries. Why is Dr. Charles RayJones still fighting in the courts to save his career? Whycan't Dr. Eva Sapi's and the University of New Haven'sLyme research get published in a major medical journallike JAMA? Why are a month's worth of oral antibioticsstill being pushed as the standard of care for a complexof diseases that such a treatment regimen doesn't eventouch? Admit your dishonesty, start over, and STARTLISTENING.Ann Goldman Please retract the existing 2006 LymeDisease guidelines which are seriously flawed. Now thatCornell University has proven that chronic Lyme diseaseexists please stop misinforming the public and PrimaryCare Physicians about vector born illnesses.Eva Eklund It is time you start work. It could be any ofyou next. Any of your loved ones. And then you surewould like the knowledge of any ILADS doctor. Familiesinfect each other, mom to child, sexually and whoknows more. Borrelia and its Co‐infections areworldwide. And you the IDSA is responsible for theguidelines in many countries. Being the big UNITEDSTATES OF AMERICA. Show it!!!Suzanne Ciskowski A reason to believe in you, the CDC,the government, the dr's, the people doing the tests &then the people who read the results again, a hope tohelp thousands of those suffer from Lyme disease & allthose other invisible diseases that everybody doesn'tseem to care about, a wish that I may someday be ableMadison Lewis If you don't change your non‐medicallybased Guidelines, and your attacks on the few Lyme10

threat.just do whats in your power before its too late,already too late for many who have died of Lyme.youhave blood on your hands. HELP USspecialists, like Dr. Jones, more babies will be born withLyme. And without Dr's like Dr. Jones, who specializes intreating infants and children with Lyme, these childrenwon't grow‐up healthy. they will grow chronic. or die.Debi Griffiths Of course I would like a cure but what IEva Eklund Oh and what about all the people not knowwould really like is acknowledgement that chronic Lymethey are infected.givingdisease "exists" and reallyDebiGriffithsOfcourseIwouldlikeablood.there is more than ticksneeds treatment for longerthat infect us. Not only do wethan 30 days when it has beencure but what I would really like isneed longer treatments andundiagnosed for many yearsacknowledgement that chronic Lymeindividual treatments. We needand has caused damage todisease "exists" and really needsthe help to get the informationmany body systems. Once thattreatment for longer than 30 daysout. Prevention is the key andhappens, I'd like to then be ableto have practitioners who canim sure you have heard itwhen it has been undiagnosed fordeal with the Lyme, the toxinsbefore. If you’re not going tomany years and has caused damageand the regular treatmentput better guidelines out theretomanybodysystems.Oncethatneeded just to keep us stable.for the many already infected.Open your eyes!!! And thehappens, I'd like to then be able topeople at risk!!!I would love to have back myhave practitioners who can deal withexecutive management career ‐the Lyme, the toxins and the regularJo Brendle Yates To recognizenot to mention the 1 milliontreatmentneededjusttokeepusthat CHRONIC Lyme diseasedollars in salary I have lostexists. And that it is indeedwhen I couldn't work, all of thestable . . . .money I have spent onbecoming an epidemic. Mytreatments, my athletic playhusband is being treated intime with my family, the ability to drive my car, carry onAlabama, altho Lyme doesn't exist here.right?!?!? Ifa conversation without losing the words, sleep and nothe had gotten the proper treatment when his tick biteoccurred, he wouldn't be in the battle for his life againtfeel like a prisoner in my own home. I want that forthis vicious disease. What will it take to open the eyeseveryone who has suffered with this for, in my case 20 years before weird health problems were finallyof those in the IDSA to see how terrible this disease is?diagnosed. I don't even care anymore if this was a bioProbably one of your own children/grandchildren, yourwarefare thing ‐ all I want is acknowledgement of thespouse, etc.to come down with this "unexplainable"disease past days, treatment, supportive therapies todisease. One of your own to have to see countless Drs.help us get back to work and on with our lives. We don'tthat tell them there is nothing wrong with them, thatlike being this sick!they are crazy, that they just want attention. Is money,politics, and power more important than a person's life.Dana Johnson have a heartTake a stand and "do what is right" !!Yvonne Forey Try saving lives instead of ignoring dyingor chronically ill people WORLD WIDE. UK follow YOURcorrupt guidelines too but wont accept USA bloodtest.somethings drastically wrong on all levels.I didntknow I had Lyme, like many mothers and passed it on tomy children and them to their children.In the word ofmy doctor " oh yes Lyme disease is a killer" then turnedhis back on me due to YOUR guidelines.These doctorsare scared and turn people away.IF or should we sayWHEN it happens to one you loved or yourself, thenwould you listen probably not because you have thepower and would get treated as BUSH did. Werebegging you from all over the world to wake up! itsbeyond pandemic.allow dr's to treat withoutKathy Obal Carlstrom I would like to see a governmentoversight committee put in charge to thoroughly reviewthe dangerously misleading misinformation put out bythe IDSA regarding Lyme Disease and co‐infections andthe curious reasons behind it, because it has become anational crisis. What is it? Conflict of interest (money)?Medical peer pressure to conform? Pride? Surely it's notignorance anymore. People and children are literallydying and suffering and your group continues to put outto the international pubic some the most inaccuratemedical information I ever seen. If you can't participatein the field of medicine honestly or use basic commonsense in your guidelines, then surely it's time for thosewho can't to step down from their positions on the IDSA11

IDSA.board. I do not say any of these words lightly. Change isneeded. The reasons why this is happening need to beaddressed now. Are there any honest people on yourboard? I am beginning to question this. I think adismantling of your group is needed with fresh newpeople put in charge who have no conflicts of interest.This would help save lives around the world.Lisa Hilton I would like for them torecognize that many people aresuffering from "invisible" illnessesand being ignored because theychose to ignore it. I would like forsomeone unbiased to startresearching with an open mind andfind the links and causes of all thesediseases and see why we aren'tgetting better.Leslie Boswell Farrell For them toactually put science before profit.When a doctor who is a member of your dinner clubstates such things it's a real sign that some need to beyanked off their High Horse and get busy being a doctor.Leonora Arnaut How about putting some people inplace that will and can actuallyLisa Hilton I would like for them make a difference in regards to thecontinual denial and flawed testingt

International Lyme and Associated Diseases Society (ILADS) Leo J. Shea, III, PhD Raphael Stricker, MD Robert Bransfield, MD Daniel Cameron, MD, MPH National Institutes of Health Francis S. Collins, MD, PhD, NIH Director Natio