TheDevastationofLivesandLies:

ThosewithLymediseaseandrelatedchronicinfectionsrespondtothe

InfectiousDiseasesSocietyofAmerica's(IDSA's)requestforcomments.

January4throughFebruary7,2012:

2,350Comments490Shares389Likes

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Contents:DocumentRecipientsList..............Introduction.........................CongressionalLeaders'Letter:OutdatedGuidelinesforTreatingLymeDiseaseShouldbeRemovedfromGovernmentWebSiteUsedbyDoctorsasResourceforMedicalProtocols...........StatusofNational&StateLymeDiseaseLegislation...........................IDSAFacebookWallComments..........Obituaries...........................USPoliticalFiguresDiagnosedwithLymeDisease........................PublicFiguresDiagnosedwithLymeDisease........................

3456778251252273273

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RecipientsListPresidentBarackH.ObamaVicePresidentJosephR.Biden,Jr.HarryReid(DNV),SenateMajorityLeaderMitchMcConnell,(RKY)SenateMinorityLeaderEricCantor(RVA),HouseMajorityLeaderNancyPelosi(DCA),HouseMinorityLeaderUSSenateCommitteeonHealth,Education,Labor&PensionsDemocratsbyRank:TomHarkin(IA)*BarbaraA.Mikulski(MD)*JeffBingaman(NM)PattyMurray(WA)*BernardSanders(I)(VT)RobertP.Casey,Jr.(PA)KayR.Hagan(NC)JeffMerkley(OR)AlFranken(MN)MichaelF.Bennet(CO)SheldonWhitehouse(RI)RichardBlumenthal(CT)RepublicansbyRank:MichaelB.Enzi(WY)LamarAlexander(TN)RichardBurr(NC)JohnnyIsakson(GA)RandPaul(KY)OrrinG.Hatch(UT)JohnMcCain(AZ)PatRoberts(KS)LisaMurkowski(AK)MarkKirk(IL)USSenateCommitteeonAppropriationsDemocraticSubcommitteeMembers:SenatorTomHarkin(Chairman)(IA)*SenatorDanielInouye(HI)SenatorHerbKohl(WI)SenatorPattyMurray(WA)*SenatorMaryLandrieu(LA)SenatorRichardDurbin(IL)SenatorJackReed(RI)SenatorMarkPryor(AR)SenatorBarbaraMikulski(MD)*SenatorSherrodBrown(OH)

RepublicanSubcommitteeMembers:SenatorRichardShelby(Ranking)(AL)SenatorThadCochran(MS)SenatorKayBaileyHutchison(TX)SenatorLamarAlexander(TN)SenatorRonJohnson(WI)SenatorMarkKirk(IL)SenatorLindseyGraham(SC)SenatorJerryMoran(KS)PresidentialCommitteefortheStudyofBioethicsAmyGutmann,PhD,ChairJamesW.Wagner,PhD,ViceChairLonnieAli,MBAAnitaL.Allen,JD,PhDJohnD.Arras,PhDBarbaraF.Atkinson,MDNitaA.Farahany,JD,PhDAlexanderG.Garza,MD,MPHChristineGrady,RN,PhDStephenL.Hauser,MDRajuS.Kucherlapati,PhDNelsonLeeMichael,MD,PhDDanielSulmasy,MD,PhDMassachusettsHouseCommitteeonPostAudit&OversightDavidP.Linsky,ChairBenjaminSwan,ViceChairBruceAyersJenniferE.BensonSheilaC.HarringtonJonathanHectStephenStatSmithHarriettL.StanleyThomasM.StanleyDavidM.TorrisAdditionalGovt.OfficialsConcernedwithLymeEpidemicScottBrown(RMA)SusanCollins(RME)HughFarley(NYStateSenate)AlFranken(DMN)ChrisHarris(TexasStateSenate)TimHolden(DPA)ChrisGibson(RNY)KirstenGillibrand(DNY)FrankLautenberg(DNJ)JosephLieberman(ICT)JohnReed(DRI)

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CharlesE.Schumer(DNY)ChristopherSmith(RNJ)BartStupak(DMI)SheldonWhitehouse(DRI)FrankWolf(RVA)InfectiousDiseasesSocietyofAmerica(IDSA)ThomasG.Slama,MD,FIDSA,CurrentIDSAPresidentBarbaraMurray,MD,FIDSA,VicePresidentStanleyC.Deresinski,MD,FIDSAStanfordUniversityInternationalLymeandAssociatedDiseasesSociety(ILADS)LeoJ.Shea,III,PhDRaphaelStricker,MDRobertBransfield,MDDanielCameron,MD,MPHNationalInstitutesofHealthFrancisS.Collins,MD,PhD,NIHDirectorNationalInstituteofAllergyandInfectiousDiseases(NIAID):AnthonyS.Fauci,MD,NIAIDDirectorCaroleA.Heilman,PhD,Director,DivisionofMicrobiologyandInfectiousDiseases

CentersforDiseaseControlThomasR.Frieden,MD,MPH,Director,CentersforDiseaseControlandPrevention;Administrator,AgencyforToxicSubstancesandDiseaseRegistryAmericasHealthInsurancePlans(AHIP)MichaelE.AbbottGeorgeC.HalvorsonPharmaceuticalResearchandManufacturersofAmerica(PhRMA)ChrisViehbacher,ChairmanofthePhRMABoardJohnJ.Castellani,PresidentandChiefExecutiveOfficerAswellasnumerousmediaoutlets,intheUSandabroad.*Denotesmembersservingonmultiplecommittees.

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LymeDisease:TheDevastationofLivesandLies

Who?TheInfectiousDiseasesSocietyofAmerica(IDSA)postedthefollowingquestiononitsFacebookwallonJanuary4,2012,at12:04pm(eastern):

Whatwouldyouliketoseefromyoursocietyinthecomingyear?

ThoughthequestionwasintendedfortheIDSAsprofessionalmembership,peoplestrickenwithLymediseaseandtheirlovedoneshereintheUSandabroadtooknotice,seeingitasoneofthe

fewopportunitiesthatweveeverhadtomakeourvoiceshearddirectlytotheIDSA(andtheworld)regardingtheoutdated,inaccurateandcorrupt

IDSALymediseaseDiagnostic&TreatmentGuidelines.

When?ThoseaffectedbytheLymediseaseepidemicbeganpostingonJanuary4,2012,andthepostingcontinuesdaily.WeusedFebruary7,2012,asthecutoffdatetobeabletocreatethis

documentandbringittoyourimmediateattentionthismonth(February2012).

Where?TheIDSAsFacebookwall,whichcanbefoundathttps://www.facebook.com/IDSociety

What?AsofFebruary7,2012,thereare:2,350Comments

490Shares389Likes

99percentofthecommentsareaboutthedevastationofLymediseaseanditscoinfectionsandcomplications.

Withindayswehadpostedover1,000comments,thoughmanyofushadourpoststakendownbytheIDSAandarenowblockedfrompostingonitswall.Wordofthisuniqueopportunitytraveled

swiftly,andwentviralwithintheLymediseasecommunityglobally,withinthefirstweekofposting.

How?Sincewesawmanyofourpostsbeingremoved,wesetupaparallelFacebookwalltocopyeveryonespostsonto,andwemonitoredtheIDSAswalldailyforseveralweeks,24/7,inshifts.We

thengatheredupasmanycommentsaswecouldtoformthisdocument(whichcontainsveryminimalediting),tookupacollectionforprinting,andwearenowbringingitdirectlytoyou.

Why?Becauseweneedanswers,weneedthetruth,andweneedtohaveourlivesanddignityrestored.Toomanyliveshavebeendevastated.Too

manyhaveneedlesslydied.

Thedespairinthisdocumentispalpable.Pleasehelpus.

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UpdatedGuidelinesforTreatingLymeDiseaseShouldbeRemovedfromGovernmentWebSiteUsedby

DoctorsasResourceforMedicalProtocolsFridayJanuary20,2012Contact:DanScandlingJoeMcNulty(202)2255136OUTDATEDGUIDELINESFORTREATINGLYMEDISEASESHOULDBEREMOVEDFROMGOVERNMENTWEBSITEUSEDBYDOCTORSASRESOURCEFORMEDICALPROTOCOLSWashington,D.C.(January20,2012)ThreemembersofCongresswhohaveworkedtohelppeoplewithLymediseasewantoutdatedtreatmentguidelinesremovedfromagovernmentWebsitethatdoctorsuseasaresourceformedicalprotocols.InaletterreleasedtodaytothecompanythatmanagestheNationalGuidelineClearinghouse(NGC),Rep.FrankWolf(RVA),Rep.ChrisSmith(RNJ)andRep.ChrisGibson(RNY)saidtheguidelineshavenotbeenthoroughlyreviewedinoverfiveyears,aconditionforinclusioninthedatabase.Theyurgedthecompanytoremovetheguidelinesuntiltheyhavebeenfullyreviewedandrevised.TheLymediseaseguidelinesoftheInfectiousDiseasesSocietyofAmerica(IDSA)havebeenhighlycontroversialandhavebeenresponsibleforinsurancecompanydenialsofLymediseasetreatments,thecongressmenwrote.WehaverecentlybeeninformedthattheseguidelineshavebeenreinstatedontheNGCWebsite,notwithstandingthefactthattheyaremorethan5yearsoldand,hence,arenolongercurrent.OurconstituentsareconcernedthattheseguidelineshavenotbeensubjecttoacompletereviewforcurrencyandthatthemethodologyofanyreviewhasnotbeendisclosedasrequiredbytheNGCsguidelines.Belowisthecompletetextoftheletter:VivianH.Coates,MBAVicePresident,InformationServicesandHealthTechnologyAssessmentECRIInstitute5200ButlerPikePlymouthMeeting,PA194621298,USADearMs.Coates:AsyourorganizationiscurrentlycontractedbytheU.S.DepartmentofHealthandHumanServicesU.S.AgencyforHealthcareResearchandQuality(AHQR)tomaintaintheNationalGuidelinesClearinghouse(NGC),wewritetoyouasrepresentativesofareasthathavealargeandgrowingLymediseaseproblem.Ourconstituentshaveagaincontactedusaboutanissuethatneedsimmediateattentiontoprotecttheirwelfare.Asyounodoubtknow,theLymediseaseguidelinesoftheInfectiousDiseasesSocietyofAmerica(IDSA)havebeenhighlycontroversialandhavebeenresponsibleforinsurancecompanydenialsofLymediseasetreatments.WehaverecentlybeeninformedthattheseguidelineshavebeenreinstatedontheNGCWebsite,notwithstandingthefactthattheyaremorethan5yearsoldand,hence,arenolongercurrent.Our

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constituentsareconcernedthattheseguidelineshavenotbeensubjecttoacompletereviewforcurrencyandthatthemethodologyofanyreviewhasnotbeendisclosedasrequiredbytheNGCsguidelines.OurunderstandingisthattherecentlyresubmittedguidelinesarebasedontheJuly2010FinalReportoftheLymeDiseaseReviewPaneloftheInfectiousDiseasesSocietyofAmerica,whichspecificallywasnotchargedwithupdatingorrewritingthe2006Lymediseaseguidelines.ThisaforementionedreviewpanelwasconvenedpursuanttoanagreementbetweentheConnecticutAttorneyGeneralandtheIDSAtoendtheAttorneyGeneralsantitrustinvestigationintotheIDSAs2006Lymediseaseguidelines.The2010panelrecommendedmorethan25revisionstotheguidelines,whichhavenotbeenaddressed.WehavebeenpresentedwithconsiderableevidencethattheNGCprocess,whichrequiresthatguidelinesbereviewedforcurrencyanddisclosureofthemethodologyfortheprocess,wasnotcompliedwithbeforereinstatingtheguidelinesuntil2015.WeurgeyoutofollowNGCcurrencycomplianceprocedureandremovetheguidelinesuntiltheyhavebeenfullyreviewedandrevised.ThemissionoftheNGCistoprovidephysiciansandotherhealthprofessionals,healthcareproviders,healthplans,integrateddeliverysystems,purchasers,andothersanaccessiblemechanismforobtainingobjective,detailedinformationonclinicalpracticeguidelinesandtofurthertheirdissemination,implementation,anduse.Onlyacarefulandtransparentprocedurewillremovethecloudthathashungovertheseguidelines.Thankyouforyourseriousconsideration.Welookforwardtoyourreply.SincerelyRep.ChristopherSmithRep.FrankWolfRep.ChrisGibsonOURNATION:Onanationallevel,therearetwobillsthatweurgeyoutosupport:HR2557:ToProvideFortheEstablishmentoftheTickBorneDiseasesAdvisoryCommitteeSponsor:ChristopherSmith(RNJ)Cosponsors:TimHolden(DPA),BartStupak(DMI),FrankWolf(RVA)S1381:LymeandTickBorneDiseasePrevention,Education,andResearchActof2011Sponsor:Sen.RichardBlumenthal(DCT)Cosponsors:ScottBrown(RMA),SusanCollins(RME),AlFranken(DMN),KirstenGillibrand(DNY),FrankLautenberg(DNJ),JosephLieberman(ICT),JohnReed(DRI),CharlesSchumer(DNY),SheldonWhitehouse(DRI)

OURSTATES:Onastatelevel,thefollowingstateshavepassedlegislationtohelpallowLymepatientstoreceivediagnosisandtreatment:ConnecticutMassachusettsMinnesotaNewHampshireNewYorkRhodeIslandTexasOtherstateshavebillsthaturgentlyneedtobepassed.Manymorestateshavenolegislation(proposednorpassed)whatsoever.

CristopherYulish Iwouldliketoseeallofthedoctorswhodraftedthe2006LymeGuidelinesexiledfromtheSocietyandbarredfromMedicineforconflictsofinterest.Theyhaveputprivateandbusinessinterestsaheadofthepublicinterest.Thisisunforgivable.Redeemyourselfandstartfreshbyhelpingthethousandswhoaresufferingwithadiseasetheycangetnorecognitionforduetothedamagefromasmalltyrannicalgroupof"experts."Traindoctorstohelpthosewhoaresick,educatethepublicwithaccurateinformationanddevelopsomerealtestingmethodssonooneelsehastosufferagain.

ToddMeeseHowaboutacureforLymedisease?Actuallylet'sstartwithsomehonestyaboutthedisease.JoanneDraysonAnhonestreviewoftheLymeDiseaseGuidelineslookingatthesciencepresentedattheIOMworkshopandacknowledgingthatallisnotknownaboutthisemergingcomplexdiseasewithit'smanycoinfections. LaurieDamsellFaheyTheFiveThousandorsoofusonFacebookwithChronicLymeDiseasetohavetreatmentoptions.JaisibelSullivanSomehonestyandunderstandingaboutLymewouldbeatthetopofthatlist,thanks.MarcellaRosenbergLessproliferationofdrugresistantmicroorganisms.JacqiEulerHonestyaboutLymeDiseaseandlessrestrictionsonthedoctorswhotreatpatientswithChronicLyme!MadisonLewisChangeinyourstanceagainsttheexistenceandtreatmentofChronic/LatentLyme.Fartoomanypeoplehavediedandaresufferingseverelyasaresultofthemisinformationyou'veputout.CorrectyourselvesbeforeyouloseallrespectfromtheMedicalCommunity.Thefilm/dvd'EyesWideOpen',openedmanyeyestoyourlinkstoinsurancecompanies..BeaboutTrueMedicalFact.ThisisMedicine...Thisisnotaboutmoneyandpolitics.LoriSullivanMangrumBetterguidelinesfortreatmentoflatestageLymeDisease.MoreLymeLiterateDoctors.DoctorstohavefreereigntotreatLymeaccordingtotheirpatients,noonepersonhasthesameDNAthereforehowcanweallrespondthesametotreatment?LisaCalistaBottoMoreLymediseaseawareness.IttookthreeyearstobefreeofmyLymedisease.Thisinsanityneedstobeaddressed.

JohnCoughlinExplaintouswhywearesosickandyoucan'ttellusanythingbutmakeuplabelsandsaythereisnocure..Howaboutallthosethatareslippingthroughthecracksbecauseofyourguidelines.DocsareafraidtooverdiagnoseLymesotheydotheexactoppositeandsendpeoplehomestillsick!Weneedchangetoomanysufferingnowtoignoreanymore...

KimTarboxThereisatremendousneedforIDSAtoretractthedegradationofanillpeopleandadmitthatyourduediligenceisincompleteregardingLyme.ReevaluatetheoathpriortoadministrationofMDlicensing.KimTarboxPreferablybeforeIdie?GinaLickliterI'dliketoseeareevaluationofyourstanceonChronicLymedisease....sickpatientsshouldn'tbetreatedwiththesuspicion,resistance,andridiculeIfacedwhenseekingtreatmentwithoneofyourphysicians.Ithinkit'stimeforsomerealopenmindeddiscussionofthistopic,giventheriseoftickbornecasesthatHAVEbeendocumented...Howmanyhaveslippedthroughthecracks?CristopherYulishIwouldliketoseeallofthedoctorswhodraftedthe2006Lyme

GuidelinesexiledfromtheSocietyandbarredfromMedicineforconflictsofinterest.Theyhaveputprivateandbusinessinterestsaheadofthepublicinterest.Thisisunforgivable.Redeemyourselfandstartfreshbyhelpingthethousandswhoaresufferingwithadiseasetheycangetnorecognitionforduetothedamagefromasmalltyrannicalgroupof"experts."Traindoctorstohelpthosewhoaresick,educatethepublicwithaccurateinformationanddevelopsomerealtestingmethodssonooneelsehastosufferagain.

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JillV.EastonAdmittingthattickborneandinsectbornediseasesareinall50states,thatitisnotjustanEastCoastdisease.IwasbitteninSanDiego,California,byatickinaresidentialareawhilestandingoncementandcontractedLyme,BabesiaDuncani,Ehrlichia,Anaplasma,Bartonella.MyelderlyfatherwasbittenfouryearslaterbyamosquitoinSanDiegoandgotLymeandBartonella.IwouldliketheIDSAtoreturntomemylifesavingsof$400,000,thatIhaveusedtopayoutofpocketmedicalexpenses,9yearsofsufferingfromdisseminateddiseases,mysuccessfuladvertisingcareer,myathleticprowess,myhealth,myhopetogetmarried,mylooks,myabilitytodothesimplethingsinlifethatotherstakeforgrantedallbecausetheheadofInfectiousDiseasesatoneofthelargestmedicalcentersinSanDiegorefusedtobelievethatLymeDiseaseexistsinSanDiego,eventhoughIhadseentheticks,hadanEMrash,hadaCDCpositiveWesternBlot,wasalreadyrespondingtothefewantibioticsIcouldgetfromanotherdoctor,andinfact,hehadseenaLymepatientthreeweeksbeforemeanddismissedherwithasmuchignoranceandarroganceashedismissedme.Ipraythatnoneofyoueverhastoendurewhatwedo.Ifyou'veeverhadapet,everwalkongrass,everdogardening,everwalkanywhere,situnderatreeoraresimplyinthewrongplaceatthewrongtime,eachofyourdoctorsandtheirfamilymembersareatrisktogothroughwhatwegothroughduetoyourguidelines.MadisonLewisdittoonthe'ExhilefromtheSocietyandbarredfromMedicine're:thedrswhodraftedthe2006LymeGuidelines!!BambiAlberttobegivenoptionsandtherighttochoosehowwewanttobetreatedforCHRONICLymedisease.ChristyHudsonTogetadiagnosisforLymeDiseasebefore6yrs,acloseencounterwithdeathand$50k+later.BambiAlbertWehavetoldyouenoughtimesIDSAwhatwewant,whydon'tyoustopaskinganddosomething???BenedettaDiLymeMoreresearchandsupportfordiagnosingandtreatingLymediseaseandotherrelatedtickinfections.

DianeLymeBallouAdmitthetruthaboutChronicLymeDiseaseandallowdoctorsandpatientstomakeeducateddecisionsonhowtheyshouldbetreatedforthisdevastatingdisease.JenniferLaurenBaileyRobinsacknowledgementofchronicLyme,fulfillmentofthehippocraticoath,andsubstantialandreasonabletreatmenttothosesufferingfromchronicLymeanditscoinfections.NaomiRachamimAnhonestevaluationofthescienceandevidenceofchronicLyme.Alookatwhatweaspatientshavebeensufferingforyears.Cristopher,Ilikeyourcommentaboutanewboardwithmemberswhodonothaveconflictofinterest.AmberGipeForsomeunderstandingandsupportofChronicLymeDiseaseandforuswhoactuallysufferfromLymediseasetonolongergobankruptinhopesofgettingbetter!!!weneedawarenessandbettertreatments!!dontaskwhatsocietywantsunlessyourFINALLYreadytolistenandmakeachange!!!andp.s.letLymedoctorstreatthewaytheyfeelisnecessary,ifwearewillingtoputourlivesintheirhandsthenwhytrysohardtostopus/them!MalloriMargareteducatethepublic!iwassickwithLymedisease&coinfectionsfor22yearsbeforeknowingwhatwaswrongwithme.i'm26now&i'mbarelyabletowork.myqualityoflifeisafractionofwhatitshouldbe&i'mconsideredmorefunctionalthanmostwhohavelatestageLymedisease.becausedoctorsareignorant,iturnedtoholisticmedicine&it'ssavedmylife!ihavealongwaytogobutican'thelpbutthinkhowmucheasierthiswould'vebeenifeducationwasavailable..tome,mydoctors,myfamily.JillJustissIwouldliketoseeappropriatetreatmentforthosewithchronicLymediseaseandastoptothepersecutionofLymedoctorswhodaretotreatthesepatientswithlongtermantibiotics.PetervonTiesenhausenTonolongermarginalizethoseafflictedbyLymediseaseandrelatedVectorBourneInfectiousDiseases.Pleasethrowoutyourexistingguidelinespertainingtothisnowandhavesomethatwillactuallyhelppeople.ThosepeopleI'mmakingreferenceto,desperatelyneedyoursupport.NicoleNewellitwouldbegreattoseeyouacknowledgethatchronicLymesexistsandletdrsknowitisoktodiagnoseandtreatpplwhohaveit....icannotevengeta

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diagnosisforiteventhoihavetestedpositiveforitthreetimesiamtoldinsteadthatihaveeverythingelse.insteadofbeingtreatediampushedawaywithnotreatmentatall....howmanyyearsamiandothersexpectedtosufferwiththisdiseasewhileyouturnyourbackanddonothingtohelp.KarieThulonKlimPleasedonotdelayinreformingthepolicyontreatmentforChronicLymeDisease.Besuretoincludeallofthenewandgrowingbodyofscientificresearch.TomMortonWholeheartedlyagreewithMrYulish'scommentsaboutLyme.TomMortonSpeakingasaphysicianitisstrikingandsadtorealizehowmuchthisissueissquelchedbymediaoutlets.....KarieThulonKlimIwaitedforyearstohavethisscourgeofanillnessrecognized.It'stimetopayattentiontothesuffering,revisetheguidelines,andtoprogressivelyintegrateresearchasnewinformationbecomesavailable.JenniferMiddletonIsufferedfor18yearsbeforebeingdx'dinMay.Ilostthemostproductiveyearsofmylife.Iamonly7monthsintotreatmentandstillsoverysick.Itistimetoadmityourmistakesandbecomeaplaceforhealingandrestorationofallofuswhosuffer.Thisistheleastyoushoulddo.MitchGordonStoppretendingthatyourguidelinesarebasedonscienceandknowledgeablemedicaltreatment.Yourguidelinesdocumentisfullofignoranceanddeliberateliesdesignedtopandertotheinsuranceanddrugindustries.WhyisDr.CharlesRayJonesstillfightinginthecourtstosavehiscareer?Whycan'tDr.EvaSapi'sandtheUniversityofNewHaven'sLymeresearchgetpublishedinamajormedicaljournallikeJAMA?Whyareamonth'sworthoforalantibioticsstillbeingpushedasthestandardofcareforacomplexofdiseasesthatsuchatreatmentregimendoesn'teventouch?Admityourdishonesty,startover,andSTARTLISTENING.SuzanneCiskowskiAreasontobelieveinyou,theCDC,thegovernment,thedr's,thepeopledoingthetests&thenthepeoplewhoreadtheresultsagain,ahopetohelpthousandsofthosesufferfromLymedisease&allthoseotherinvisiblediseasesthateverybodydoesn'tseemtocareabout,awishthatImaysomedaybeable

toifnotworkthenatleastwakeupinthemorning&haveadaythatIcanevencleanmyhomewithoutwonderingifIwillbehospitalized,adreamthatdoesn'tturnintoanightmare&beabletotakeawalkevenjusttocheckmymailwithoutthepossibilityoffainting&thengoingunconsciousforhours,andofcoursetherealitythatImaybecomeastatistic&haveittakemedying&anautopsytofinallydiscoverwhatIhad.I'vehadLymesincethelatesummerorearlyfallof1969wheniwasonly6yrs.oldfromatickbite,thetickwasimbeddedinmyheadfordaysbeforemymomactuallyrealizeditwasatick&notascabfromabumponmyhead.PlushavingmultiplepositivetestsincludingtheElisa&westernblot.Andthenmaybesomedayitdoesn'ttakeover40yrs.togetaLymediseasediagnose.Thiswasonlyalittleover2yrs.ago.I'vebeenverysicksincethebeginningof1991whenallofmyhopes&dreamswerestolenfromme.Ieventriedtocontinuemyeducation&workuntiltheendof2001.I'monly48yrs.old&deservealifeasdoesthethousandsthatarebeggingforyouhelp.EachyearmanyLymesuffersdie&someofthemdon'tevenknowtheyhavethisdiseasesoallweaskistoberecognized&counted.MitchGordon ...andmycommentsarebasedonbeingmarriedtoaLymesuffererof8or10yearsrunning...whoselifehasbeensavedandgraduallyimprovedbyaLymeliteratenaturopathicdoctor,whileeveryoneatourHMOwhohassupposedlytriedtoaddressherLymeandbabesiabasedonyourgarbageLymeguidelineshasbeenineffective,ignorantanddismissive.AnnGoldmanPleaseretracttheexisting2006LymeDiseaseguidelineswhichareseriouslyflawed.NowthatCornellUniversityhasproventhatchronicLymediseaseexistspleasestopmisinformingthepublicandPrimaryCarePhysiciansaboutvectorbornillnesses.EvaEklundItistimeyoustartwork.Itcouldbeanyofyounext.Anyofyourlovedones.AndthenyousurewouldliketheknowledgeofanyILADSdoctor.Familiesinfecteachother,momtochild,sexuallyandwhoknowsmore.BorreliaanditsCoinfectionsareworldwide.AndyoutheIDSAisresponsiblefortheguidelinesinmanycountries.BeingthebigUNITEDSTATESOFAMERICA.Showit!!!MadisonLewisIfyoudon'tchangeyournonmedicallybasedGuidelines,andyourattacksonthefewLyme

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DebiGriffiths OfcourseIwouldlikeacurebutwhatIwouldreallylikeisacknowledgementthatchronicLymedisease"exists"andreallyneedstreatmentforlongerthan30dayswhenithasbeenundiagnosedformanyyearsandhascauseddamagetomanybodysystems.Oncethathappens,I'dliketothenbeabletohavepractitionerswhocandealwiththeLyme,thetoxinsandtheregulartreatmentneededjusttokeepusstable....

specialists,likeDr.Jones,morebabieswillbebornwithLyme.AndwithoutDr'slikeDr.Jones,whospecializesintreatinginfantsandchildrenwithLyme,thesechildrenwon'tgrowuphealthy...theywillgrowchronic..ordie.EvaEklundOhandwhataboutallthepeoplenotknowtheyareinfected...givingblood...thereismorethanticksthatinfectus.Notonlydoweneedlongertreatmentsandindividualtreatments.Weneedthehelptogettheinformationout.Preventionisthekeyandimsureyouhavehearditbefore.Ifyourenotgoingtoputbetterguidelinesoutthereforthemanyalreadyinfected.Openyoureyes!!!Andthepeopleatrisk!!!JoBrendleYatesTorecognizethatCHRONICLymediseaseexists.Andthatitisindeedbecominganepidemic.MyhusbandisbeingtreatedinAlabama,althoLymedoesn'texisthere....right?!?!?Ifhehadgottenthepropertreatmentwhenhistickbiteoccurred,hewouldn'tbeinthebattleforhislifeagaintthisviciousdisease.WhatwillittaketoopentheeyesofthoseintheIDSAtoseehowterriblethisdiseaseis??Probablyoneofyourownchildren/grandchildren,yourspouse,etc......tocomedownwiththis"unexplainable"disease.OneofyourowntohavetoseecountlessDrs.thattellthemthereisnothingwrongwiththem,thattheyarecrazy,thattheyjustwantattention.Ismoney,politics,andpowermoreimportantthanaperson'slife.Takeastandand"dowhatisright"!!YvonneForeyTrysavinglivesinsteadofignoringdyingorchronicallyillpeopleWORLDWIDE..UKfollowYOURcorruptguidelinestoobutwontacceptUSAbloodtest...somethingsdrasticallywrongonalllevels...IdidntknowIhadLyme,likemanymothersandpasseditontomychildrenandthemtotheirchildren...Inthewordofmydoctor"ohyesLymediseaseisakiller"thenturnedhisbackonmeduetoYOURguidelines...Thesedoctorsarescaredandturnpeopleaway...IForshouldwesayWHENithappenstooneyoulovedoryourself,thenwouldyoulistenprobablynotbecauseyouhavethepowerandwouldgettreatedasBUSHdid.Werebeggingyoufromallovertheworldtowakeup!itsbeyondpandemic....allowdr'stotreatwithout

threat...justdowhatsinyourpowerbeforeitstoolate,alreadytoolateformanywhohavediedofLyme...youhavebloodonyourhands..HELPUSDebiGriffithsOfcourseIwouldlikeacurebutwhatIwouldreallylikeisacknowledgementthatchronicLyme

disease"exists"andreallyneedstreatmentforlongerthan30dayswhenithasbeenundiagnosedformanyyearsandhascauseddamagetomanybodysystems.Oncethathappens,I'dliketothenbeabletohavepractitionerswhocandealwiththeLyme,thetoxinsandtheregulartreatmentneededjusttokeepusstable.Iwouldlovetohavebackmyexecutivemanagementcareernottomentionthe$1+milliondollarsinsalaryIhavelostwhenIcouldn'twork,allofthemoneyIhavespentontreatments,myathleticplay

timewithmyfamily,theabilitytodrivemycar,carryonaconversationwithoutlosingthewords,sleepandnotfeellikeaprisonerinmyownhome.Iwantthatforeveryonewhohassufferedwiththisfor,inmycase20+yearsbeforeweirdhealthproblemswerefinallydiagnosed.Idon'tevencareanymoreifthiswasabiowarefarethingallIwantisacknowledgementofthediseasepastdays,treatment,supportivetherapiestohelpusgetbacktoworkandonwithourlives.Wedon'tlikebeingthissick!DanaJohnsonhaveaheartKathyObalCarlstromIwouldliketoseeagovernmentoversightcommitteeputinchargetothoroughlyreviewthedangerouslymisleadingmisinformationputoutbytheIDSAregardingLymeDiseaseandcoinfectionsandthecuriousreasonsbehindit,becauseithasbecomeanationalcrisis.Whatisit?Conflictofinterest(money)?Medicalpeerpressuretoconform?Pride?Surelyit'snotignoranceanymore.PeopleandchildrenareliterallydyingandsufferingandyourgroupcontinuestoputouttotheinternationalpubicsomethemostinaccuratemedicalinformationIeverseen.Ifyoucan'tparticipateinthefieldofmedicinehonestlyorusebasiccommonsenseinyourguidelines,thensurelyit'stimeforthosewhocan'ttostepdownfromtheirpositionsontheIDSA

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LisaHilton Iwouldlikeforthemtorecognizethatmanypeoplearesufferingfrom"invisible"illnessesandbeingignoredbecausetheychosetoignoreit.Iwouldlikeforsomeoneunbiasedtostartresearchingwithanopenmindandfindthelinksandcausesofallthesediseasesandseewhywearen'tgettingbetter.

board.Idonotsayanyofthesewordslightly.Changeisneeded.Thereasonswhythisishappeningneedtobeaddressednow.Arethereanyhonestpeopleonyourboard?Iambeginningtoquestionthis.Ithinkadismantlingofyourgroupisneededwithfreshnewpeopleputinchargewhohavenoconflictsofinterest.Thiswouldhelpsavelivesaroundtheworld.LisaHiltonIwouldlikeforthemtorecognizethatmanypeoplearesufferingfrom"invisible"illnessesandbeingignoredbecausetheychosetoignoreit.Iwouldlikeforsomeoneunbiasedtostartresearchingwithanopenmindandfindthelinksandcausesofallthesediseasesandseewhywearen'tgettingbetter.LeslieBoswellFarrellForthemtoactuallyputsciencebeforeprofit.TimHartTelltheTruthabouttreatingLyme!LongtermAntiboticsWORK!TracySchittlerRewritetheguidelinesforLymeDisease...stoppretendingthisissomethingthatisjustgoingtogoaway.Wearerealpeople..witharealdiseasewhoshouldbeabletogetrealcarebyDoctorswhodonthavetobeafraidtotreatusthewaythatweneedtobetreated,fortheamountoftimeweneedtreatment.IwouldalsoliketoseesomenewfacesontheIDSAboard,onesthatarewillingtostandupforLymeDiseaseandthepeopleaffected!!Howmanymorehavetodie...shameonyou!!!DebbieThompsonFirst,donomoreharm.Cheryl'sLymePageIwouldliketoseemorecompassionandLESSarrogancefromthemembers.Maybeofferclassesonhowtospeaktopatients?Usemoreadulttermsthan"vaguesymptoms"or"compellingstories"whenweareaskingyouformoreanswersandREALhelptogetbetter.IspoketoanIDSAmemberinBethesdaMDwho'sonlyanswertomeforwhatIcoulddobecauseI'mstillsickwas"doyoubelieveinGod?"Isaid"well,yes."Hesaid"Thenmaybeyoushouldpraymore"hefurthertoldmeheagreedthereisflawsintheguidelinesbutheisn'tgoingtogoagainstitaslongashe'samemberofthe

IDSA.Whenadoctorwhoisamemberofyourdinnerclubstatessuchthingsit'sarealsignthatsomeneedtobeyankedofftheirHighHorseandgetbusybeingadoctor.LeonoraArnautHowaboutputtingsomepeoplein

placethatwillandcanactuallymakeadifferenceinregardstothecontinualdenialandflawedtestingandmessedupguidelinesthattheIDSAstandssofirmlybehindwhenitcomestoLymedisease!ThisshouldNOTbeaboutprofit!HowmanymorehavetodiebeforetheIDSAadmitsthatthey'vebeenwrong?Ourmedicaldoctorsknowthereisahugeproblemhere,butareafraidoftheIDSA,sotheirhandsaretied.Yourguidelinesarecruelandcriminal.GaryGlaserYoushoulddoavoluntaryinvestigationofyour

boardusinganexperiencedindependentgroupthatwillverifythateachboardmemberiscapableofparticipateindecisionmakingwithoutbeinginfluenced.SinceIDSAdoesnotreporttoanyotherorganizationorisresponsibletodocumentactivitiesoftheboardifyouwontdosotheIDSAisnottobetrustedandisthenuseless. LizaCammeronTossoutthosepainful,dated,fraudulentgroupofguidlinesyouhaveforLymepatients.AndstoppersecutingtheirDrs.Idon'tknowwhicharoundmeisgrowingfaster,morechronicLymesufferers,orhorrificallymisinformedDoctorswhoremainsobybelievingthe2006guidelinesIDSAputout.AtaskforceneedstodismantlethecriminalgroupofDrswhosettheseguidelines,inordertolinetheirpockets,andputoutthesciencebasedGuidelinesLymeDrsandLymePatientsneed.AngelicaJohanssonChangeyourstanceinthequestionofLymediseaseLoriDitzlerHagarmanAdmitthatLymeDiseaseisanepidemicandfindacure!CathyZichichiBalsamoWorkontreatingLymedisease!OKMaybenoteventreatBUTAcknowledge!EDUCATEyourselves!Reviewguidelinesandrevisit!

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TonyLyConfesstothetruthsaboutLymeDiseaseandstarthelpingpeoplesothebloodonyourhandswillcease...Eitherway,therewillbejusticeoneday...Godseesallthings.GabbiHicksOpenyoureyes&startsupportingLymediseasevictimsMelissaKoshenIDSADON'TYOUCARE?LYMEDISEASEISEVERYWHERE!!Startbeingpartofthesolutionandstopbeingpartoftheproblem.DawnjaMcCormackRealizeLymeDiseaseisrealandeverywhereandhelpgetdoctorstorecognizeandtreatitCORRECTLY!!!LieseJarboeopenyoureyestochronicLymeasaninfectionandnotapostinfectionsyndrome.hello,iftheBbisstillinthebodythebodyisstillINFECTED!!!youdon'tneed6bandstobesick,onlyneededtoreporttheCDC.Getyourheadsoutofyourassesandoutofpoliticsandmanagedcareandtreatpeoplelikehumanbeingswhoneedrealmedicaltreatment.ihadapositivebloodtestandanIDSAprovidertoldmeididn'thaveLymeandthatthereisnoLymeinNC.aftertreatmentbyanotherdoctor,iambetter.youareliarsandthieves!KatStricklandIamtenyearsinandproofthatChronicLymeexists.IwanttoseetheguidelineschangedtomatchthestandardofcarewedeserveandhavearighttointheUSA.Thisisstillafreecountryandweshouldstillhavetherighttoselecttheprotocoltreatmentoptionswithourdoctorandforhowlongittakestoreachafunctionallifestyle.GarySchittlerJrHowboutnewguidelinesandbettertestingforLymedisease!!!SusanLalorHelpLymeDiseaseVictims.KatStricklandInaddition,Ialsowilllikeforallofthedoctorswhodraftedthe2006LymeGuidelinesexiledfromtheSocietyandbarredfromMedicineforconflictsofinterest.Theyhaveputprivateandbusinessinterestsaheadofthepublicinterest.Thisisoutrageousandshouldnolongerbeignored.Lymeisnotgoingtogoaway.Itwillonlyincreaseeachyear.Thisisaplaque.KristiL.ServiesDosomethingrealandseriousaboutLyme!

RobinSklarFisherIwouldlovetoseedrs.whobelieveincompassionandbelievingtheirpatientswhentheydescribesymptomsinsteadofdismissingthem.Toomanypeoplesufferfromthesamesymptomsforittobeintheheadofsomany.Explainwhysomanyofthesepatientsimproveandevengetwellwhentheyobtainqualitycarefromallmd.Insteadofattackingllmd'sbecausetheiropinionsdifferfromyoursquestionwhattheyareseeingandwhytreatmentstheyprescribeoftenprovidereliefwhileyoujustleavepatientstodeteriorate.IgrewupinafamilywithdoctorsandwasalwaysraisedtobelievetheywantedtohelpendsufferingsoIquestionwhyareyouallowingtheuntoldsufferingofmillions?MakeyourNewYearsResolutiontobefairandhonestandreviewyourstance.Listentothemillionspleadingforhelp!ClaireStJamesI'dliketoseeyouacknowledgechronicLymebothitsprevalenceanditsseverity.WorkWITHILADSandotherhealthcareprofessionalstofindsolutionsforthisdisease.Ifyoutrainphysicianstocatchtheacutecases,you'llhavefarfewerchroniccasestodealwithinthefuture.Thankyou!AnneHowardAcknowledgeChronic/LatestageLymeDisease.PleaseexplainIfitdoesnotexist,whyarewe(thoseofuswiththisillness)notallowedtodonatebonemarroworblood?37+yearswithLymediseaseElizaNokomis Keepyourpoliticsandyourmoneyoutofmyhealthcare.Stopharassingmineandmychildren'sdoctorstheysavedourlives,notyou.AcknowledgetheneedformoreresearchintoLymeandcoinfectionsbeingtreatedinawaythathelpspatientsnothavetorelyonanecdotalevidence(whichworksbetterthanyourguidelinessincewe'renotwaitingforyoutoputmoneyintoreliableresearchbeforewedie).EncouragedoctorstolearntheclinicaldiagnosiscriterionnotsomeCDC"reportingcriterion"inordertoidentifysickpatients..educatedoctorsthattherearemorestrainsofLymeandonlystrainhasatest(thereforeitisnotallinourheads).Traindoctorsandhospitalstotestforcoinfectionswhichrequiredifferentmedications(again,soonceour"Lyme"is"cured"wedon'thavetolayinbedwonderingwhywe'restillsick).Educatepatientsthatthisdiseaseissexuallytransmittableandabletobepassedtochildreninutero.Makeresourcesavailabletospeechandlanguageproviders,OT/PT,psychprovidersandschoolssothatourchildrenstandachanceofmakingitthruonesingledamnday...thatshouldbeagoodSTARTforyouguys.

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ChristinaGingerich IhavehadLymefor20+yearsanddiagnosed2/2011.Folksdon'tunderstandwhyI'mworsenowthanbetter...howdoyouexplainitwhentheydon'tbelieveyouaresick?IwouldliketoseeDrs.educatedandlearntolistentotheirpatientsratherthanjustdoingthe"usual"treatment.Whyaretheysoclosemindedtothis?Yes,itisaverysadsituation.

Don'tknowhowyoupeoplesleepatnightafteralltheharmyouhavecausedsomanysickpeople.Shameonyou.LaurieDamsellFaheyAllofushavethesamesymptomsoftheNonexistentdisease..inthechatroomsinthesupportgroups..alldesperateforhelp..MysalivaryglandsaresoswollenthatIhavebeentoldthatIprobablyhavecancerbythreeseparatedoctors!NOLYME!!Ohwellthatdoesn'texistwewillcallitsomethingelse???IwenttoahospitalandgottreatedforanUnKNOWNEnvironmentalInfectionthepoordoctorwasafraidtocallitforwhatitis??Howdoesthatmakessense?BecauseTheIDSAcan'tcallitanythingthehospitalturnedmeawayandperhapsIwilldie???Likemanyothersbutwhatdoesitsayontheirdeathcertificate?notLyme?JeannineComtoisBennettPleaseacknowledgethatChronicLymeexists.Achangeintheguidelinesisnecessary,asiseducatingDoctorsaboutrecognizingLymebeforeithasachancetobechronic.Toomanypeopleinthemedicalprofessionbelievethedrivelthatwasputintotheguidelines.Longtermantibioticsdowork.IwentforyearsandyearsfromoneDr.tothenext,onespecialisttothenext,untilIfinallyfoundaLymeliterateMDwhohasbeenabletohelpmeheal.Ithasbeenalong,hardroadandIamnotthroughyet.UsetheWesternBlotandgetridofthetiterasthemaintest.NicoleB.ithinkitisclearthatLymepolicyneedstobereexaminedandindependentresearchneedstobeconducted.appropriatetreatmentforLymediseaseandcoinfectionsisdesperatelyneededbythehundredsofthousandssufferingfromthisdisease!!!!LoriDitzlerHagarmanChronicLymeexists!Ihavehaditforatleast15yearsandcounting.KenBartonchangetheguidelinesregardingLyme'?KenBartonmorepeoplewithHIVworkingintheField!Itseemsthatorganizationshavegottenawayfromthisoverthepast5yearsorso!

SusanHooverIhavehadLymeDiseasefor29years;diagnosedjustoneyearago.IwastoldIcouldnothaveitbecausewedon'thaveLymeinOhio.Really?Well,wedonow.HowdoI"like"allthepreviouscomments?I

wishforalldoctorstohavetotakeanextendedcourseonLymetogetuptospeedwithitsotheycanrecognizeitandbegintreatingforit.IamanurseandIhearpatientssay"Ihurtallover."Iimmediatelythink"LYME!"butnever,everhaveIseenapatientbediagnosedwithLyme.Itisasadsituation.KenBartonHowabout,MoreDrswithHIVondecisionmakingboards,and.....Lyme.?Thisisnotall

aboutLyme.Weneedtobeproactivewheretherearefailingsinbothoftheseinfectiousdiseases.KimberlyAndersonElliottForIDSAmemberstonothavesevereconflictsofinterestincludingrelationshipswithManagedCareandBigPharma(vaccinepatents)cloudingtheirjudgment.NosingleorganizationoranyPhysicianshouldmakemoneyoffdenyingtreatmenttopatients!"Todonoharm"Rememberthatpledge?!?!ChristinaGingerichIhavehadLymefor20+yearsanddiagnosed2/2011.Folksdon'tunderstandwhyI'mworsenowthanbetter...howdoyouexplainitwhentheydon'tbelieveyouaresick?IwouldliketoseeDrs.educatedandlearntolistentotheirpatientsratherthanjustdoingthe"usual"treatment.Whyaretheysoclosemindedtothis?Yes,itisaverysadsituation.LaurieDamsellFaheyMyfriendisCDCPositivelivesinandwasbornandraisedinARIZONAyesARIZONAthestatethathasthemostcasesofErlichiainDogs..buttheIDSAdoctortoldheritsnotpossiblethereisnoLymeinArizona..soshetestedherforHIVandthenturnedaway.EvenmyNeurologistsaidmostIDSAdoctorsareafraidtotreatLymePatientsandwont.Thepoorgirlhasbeensickforyearsandhashadthirteenoperations..forthesamesymptomsweallhave.LaurenHentschelLamoreauxLearnthetruthaboutLymeDiseaseanditscoinfections.Itcananddoesgochronicwhenuntreated.AndthereIShopeforthoseofuswhohaveit.ButuntilYOUgetitright,wehaveto

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fighttoothandnailtobetreated,whilebeing"treated"likeoutcastsandnutjobsbythetraditionalmedicalcommunity.Getthefactsfrompeoplewhohaven'tbeenpaidoffbyotherparties,learnwhat"latestage"or"chronic"Lymesufferersgothrough,andCHANGETHEGUIDELINES.Peoplearesufferingneedlesslyhere.ElizabethGrimmI'dliketoseeoursocietyacknowledgechronicLymebothitsprevalenceanditsseverity.Iwouldlikeforoursocietytoacknowledgethatdiseaseandticksdon'tsticktostateboundariesandthateverystateispotentiallyinfectedwithLymediseaseticks.WorkWITHILADSandotherhealthcareprofessionalstofindsolutionsforthisdisease.Ifyoutrainphysicianstocatchtheacutecases,you'llhavefarfewerchroniccasestodealwithinthefuture.Also,pleasewatchUnderOurSkin,thedocumentaryandconsidertheinformationithas.Thankyouforallowingustobeinvolved!KimTarboxTherewillcomeadaywhereyoucannolongermakesyndromesandblamepsychosomaticreasoningsforlostlives.Therearehundredsofthousandsofwalkingdead...oncehighfunctioninghighlyeducatedpersons..withdestructiveandfalselabelsontheircharts.Thecontinuedunwillingnesstoaddressthiswilleventuallyleadtothedemiseofyourintegrity.Yourcurrentcompromisewillcostfarmorethananyfuturemonetaryorscientificgain.Please...respectfully...don'tjustlisten..buthearapeopleingreatthreatofourliterallives.Tellus...whatwillittaketoaquireyourcommitment?DavidReinhardtWhyisitthatfewerthanhalfadozendoctorsintheentirestateofMIwilltreatLymeandthatitisalmostimpossibletofindthem?IfthefirstfourorsoIwenttohadevenconsideredImighthavehadLyme(withhistoryofaticbiteandbullseyerash)9yrsago,maybeIwouldn'tbeinfectednow!Areallthosedoctorsafraid,forsomereason,togetinvolvedwithLimediseaseandit'spolitics?WhitneyJohnstonWoodburnIaminagreementwitheveryonethatlatestage/chronicLymediseaseneedstoberecognized.Doyourealizehowmuchpatientshavetospendjusttobeabletowalkeachday?Wearemoms,dads,husbands,wives,childrenetc.thataretryingtocontributetosocietyandmaketheworldabetterplacebutduetothelackofattentionyouchoosetopaytoLymediseasetherearemanypeopleunabletoliveouttheirdreamsandusetheirtalents.Morethanthatpeoplearedyingbecauseofmisdiagnosisorlate

diagnosis.Therearesomanystoriesoutthere.Maybeifyoutookaninterestinthepeopleyouare"serving"wewouldsupportyoumore.Whycan'tweworkcooperativelytogether?WhatisithurtingtheIDSAtoacknowledgeweexist?MadisonLewis @Whitney:Theanswertoyourlastquestion..$$$$$$$$DebbieBatesQuallsLYMEdiseaseisREALineverystate.NOWisthetimetostepupandtakeaction.Noneedforprolongingsufferingofthousandsofpeoplewhoallfightfortheirliveseveryday,tryingtoeducatethemselvesandothers,whenmanyofthemhaveverylittleenergyforanything.Somanysimilarstories,itishardtobelievethatintodayssociety,thereissuchdifficultyinmakingheadwaytogetinhelpatall,(recognition,testing,support,research,treatment,etc)CourtneyBailey quitperpetuatingthemyththat"Lymediseasedoesn'texist"incertainstates.Itiseverywhere!QuittellingallofusthatchronicLymediseasedoesn'texistandthatlongtermantibiotictreatmentisn'teffectiveorsafe.Itcanbebothifdoneproperly.W/othattreatmentIwouldbedead.QuitlettingthefewLymeliterateDr'swecanfindbehunteddownbystateboardsfortreatingussimplybctheyrefusetofallinlinew/yourflawedtreatmentguidelines!Atleastbehonestenoughtoadmitthatyour"society"doesn'tknowenoughabtLyme/chronicLyme/coinfectionstoputoutasetofrules(ucallguidelines)tobeappliedacrossallsituations.Can'tweevenadmitthatwejustdon'tknowenoughabtthisdiseaseandit'svariousformstoestablishastrictsetofguidelines?Useallofurprofitsfromurboardmembers'patentsonLymetest/testkitstowardsindependentresearchforLyme.ForGod'ssakeatleasteducateallstudentsinmedschoolthatLymecanbesexuallytransmittedandthesignsofacuteinfection.Wecanagreethatacuteinfectionexistscan'twe?Andthatcoinfectionsexist.HereinOhiotheDr'sbarelyknowwhatacuteLymeisletalonethesignsofchronicinfectionorthevariouscoinfections!Thatiscriminal.StopteachingDr'sthatallLymecasespresentwitha

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rash!Thatismyththatmustbedispelled!Workw/independentresearcherstocomeupw/betterdiagnostictools!TodothisyourboardmustnotincludememberswhoaremakingANYprofitonanypartoftheLymediagnosisincludingtests,kits,andmedsorvaccinesforthetreatment/preventionofLyme.AttheveryleastpleaseuseyourfundstoeducatetheENTIREcountryabtLymeitssymptomsandtransmission!Thisisnotjustacoastaldisease!Lastly,Iwillsaythatitmakesmesick(nopunintended)thatsomanyofusaretoldthatourillnessisinourheads.Wearesickdammit!Andweneedeffectiveclinicaldiagnosisandtreatment.Weareentitledtodignityandrespect.UntilyoucanadmitthatyouhavemademistakesandthatthereissomuchweneedtolearnabtLymebeforeweshouldpublishguidelines(whichareusedlikedictatesdirectlyfromgod),therewillbehundredsofthousandsofmisdiagnosed,undertreatedandtrulyillpeoplewillcontinuetosuffer.Werefusetobesilenced!#OccupyIDSASusanMcInnisAcknowledgementthatchronicLymeisadiseasethatiscausingtremendouspaintohundredsofthousandsofpeopleworldwide.AcknowledgementthatyourguidelinesfortreatingLymediseaseareflawed,outofdate,andpunishingthesickest.Acknowledgementthatthoseguidelinesneedchangeandthegutstoactuallyfollowthroughandfixthem.ChrisPowellcometothetablefordiscussionwithanopenmind.includeILADSdocsinequalproportiontoIDSAPanelmembers.betweenthetwogroupsperhapspatientsCANbehelpedandtheepidemiccanbeslowedbyPROPERtesting,PROPERdiagnosisANDPROPERtreatment....LONGtermworksforalotofpeopleincludingmydaughter.thehealthriskofdoingnothing=deathsowechoosetotreatandhappilysignanyreleasenecessarytogetthejobdone!!!DebbieSmithLettheexpertdoctorstreatusasweneedtobeandhelpwiththelawssothatinsurancehastopay.I'veheardtoomanystoriesofpeople'sstruggleswithinsurance,existenceofLyme,diagnosisofLyme,etc.If"westernblot"waslistedasastandardtestandwithareliablelabthenmaybepeoplewouldgetdiagnosedsoonerandnothavetogotosomanydoctors,labs,MRIs,etc.Inthelongrunitwouldalsosaveinsurancecompaniesmoneyifwedidn'thavetogothroughsomuchtogettheanswer.Thanks.

AshleyOrdeckiIwouldliketoseeyourguidelineschangedaboutLyme.Thistimewithnoconflictsofinterest.WhynotuseLymeliteratedoctorsthistimethatareactuallyimprovingpatients?Itissuchashamethattheyaregettingtheirlicensessuspendedandtakenawaywhentheyaretheonlyonesthathelpus.Stophidingthetruth.Somedayyouwillhavetoadmititoncetherearetoomanyofustoignore.Itshouldn'thavetocometothat.Pleasehelpstopallofthesuffering.Makethisatruthfulyear!ChronicLymeexists!IknowbecauseIhaveit.IhavehadLymefor2yearsbeforebeingdiagnosed.21daysofantibioticsdidn'tcuremeandneitherdidwaitingitout.AlanBurdgeSTOPLIEINGABOUTLYMEDISEASEANDTICKBORNEILLNESSES!PEOPLEAREDIEINGANDYOUDONOTHINGBUTCATERTOTHE$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$SPECIALINTEREST!!!!!!!AlanBurdgehttp://www.youtube.com/watch?v=JpPFKpFXmQ&featu=player_embeddedDrHaroldSmith'stestimonywww.youtube.comLymeDiseaseisthemostrapidlyspreadingdisease,fasterthanHIV/AidsTBandCancerAlanBurdgehttp://www.youtube.com/watch?v=rlwBuFAIJoyBurdgewww.youtube.comAlanBurdgeWATCHTHETRUTHABOVE!!!!!!!!!!!!!!!GaryBarrettI'dliketoseeyoutakeresponsibilityforthemultiplethousandsofpeoplewhohavesufferedbecauseofyournarrowmindedviewofchronicLymeDisease.Manypeoplehavesufferedduetoyourunreasonable,outdatedandunscientificguidelines.Morepeoplecommitsuicidefromthisdiseasethandyingfromthediseaseitself.Whyisthis?It'sbecauseeverywheretheygolookingformedicalhelptheycangetitbecauseofyourasinineguidelines.Theycan'tstandthepainandsufferinganymore.Theycan'tstandbemockedandnottakenseriouslywhentheygotodoctorsforhelporendupintheERwithstrangesymptomsandhorriblepainallovertheirbody.Whenareyougoingtospendmoretimeandmoneysearchingforacureforthisevildiseaseratherthangoingaftergooddoctorswhoaretryingtohelpusand

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SusanMcInnis AcknowledgementthatchronicLymeisadiseasethatiscausingtremendouspaintohundredsofthousandsofpeopleworldwide.AcknowledgementthatyourguidelinesfortreatingLymediseaseareflawed,outofdate,andpunishingthesickest.

alleviatethepainwesufferfromthisdisease?YourpolicieshavecausedharmtomillionsofLymesuffererseverywherebecauseyourorganizationdeniestheseriousnessofthisdisease.Whyisitthatinalmosteverystatewhensomeonegoestoaninfectiousdiseasedoctortheysay,"wedon'thaveLymediseaseinourstate"?Howcanyousaythistopeople?GetontheLymeforumsandreadaboutpeoplewhohavesufferedwiththisdiseaseforyearsandyearswithnorelief.Yourdoctorssay,"well,iftheystillsufferaftertakingantibioticsforafewmonthsthentheyhavesomethingelsewrongwiththem".Really?Howcanthatbewhensomanypeoplenevergetbetter?Yourorganizationhasbloodonit'shands.Youshouldbeashamedofthewayyouhavetreatedthoseofuswhohavesufferedwiththisdisease.Quitplayingpoliticswiththisdiseaseandgetyourheadoutofwherethesundon'tshineandlookatthefacts,notyouroutdatedguidelines.Peoplearedyingsufferinganddyingfromthisdisease,andwhatareyoudoingaboutit?Helpingpeoplegetbetter,no!You'regoingaftergooddoctorsandhuntingthemdownandtryingtogettheirlicensestakenawayfromthem.Enoughofthis!YouarenotgoingtogetawaywiththismuchlongerbecausewethepeoplewhosufferwiththisdiseaseareFEDUP!WeareNOTgoingtotoleratethisanylonger.Eithertakeusseriouslyandhelpusgetbetterorshutdownyourdoors.Youservenopurposetothoseofuswhosuffereverydaywiththisdisease.Nonewhatsoever.Iwouldnotwishthishorriblediseaseuponyouoryourfamilymembers,yet,youletmeandmyfamilysufferwiththisdaily.Ican'tgettreatmentforit,soIhavetofendformyselfandselftreatbecausealmosteverydoctorinmystatedoesn'tbelieveweevenhaveLymedisease,andnoneoftheinfectiousdiseasedoctorsbelieveinchronicLyme.Sowheredowegotogethelp?There'snowhereforustogo!That'swhysomanyofusaredesperateandtakemattersintoourownhandsandtrytotreatourselvesanywaythatwecan.Wearesickandtiredofbeingsick.We'resickandtiredofbeingignoredandmarginalized.It'stimeforyoutowakeupandtakeusseriouslyandstartrealizingthatthistickbornediseaseisanepidemicthatneedstobe

addressedandseriousmoneyneedstobespentinvestigatingacureforit.Ifyoucan'tdothis,thenplease,dousallafavor,closeyourdoorsanddon'tdoanymoreharmtous.You'veharmedmillionsofus,it'stimeyoustopharmingusandstarthelpingus!ArielMarquetPleaseacknowledgethatLymediseaseisacomplexdisorderusuallycomplicatedwithmultiple

tickborneinfections.DebbieSmithI'dliketoaddanothercomment...IhearaboutpeoplebeingdiagnosedwithMS,Fibromyalgia,ChronicPainSyndrome,Lupus,Arthritis,etc....someofthesesamepeoplehavealsofoundoutthatLymeDiseaseisthereasontheyhavetheseailments.DoctorsthoughtI

hadMS....ifIhadcontinuedonsteroidsinsteadoffinallybeingdiagnosedcorrectlywithLymeIprobablywouldNOTbeheretypingthiscomment.Pleasehelp...thisisAmericaafterall.AlanBurdgeAssociationwiththeproductionofALSinmeninLymeendemicareas.www.actionLyme.orgMakeaTLRagonistbotsowecandoawaywithticksandfungalimmunesuppression.StephanieMichelleKealyMYsociety?Obviouslythissocietyhas0interestinme,aLymepatient,whohasseenover30doctorsandspentthousandsofdollarsoverthepast5yearstofinallyreceivethecorrectdiagnosisandtreatment.InAugust2011,Ibeganwhatismostlikelygoingtobeamultiyear(andthousandsofdollarsmore)journeytorecovery.AlanBurdgeIDSALYMEDOCTORSARE2ndRATEATBEST!!!!!!!!morerdrate.$$$$$$$$$$$$$$$$$$$$$$isalltheycareabout.NOTYOURHEALTH!!AndreaGarnerButtramSpendthepastthreeyearsinmyshoesaftermyencounterwithatickhereinGAwhereLymedoesn'texist.IDSAyouwillnotberememberedfondly.Weknowandwewillnever,everforget.

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KaetheMitchell IhavetwochildrenwithlatestageLyme,bartonellaandbabesiosis.TheywerenevertreatedbecauseweneversawanEMrashortick.Theyarenow,afteryearsofillnessandspecialistssayingtheyweremakinguptheirsymptoms,ontheirwaytohealththankstoanamazing,nonIDSAdoctor.ELISAswerenegative.Changeyourways,IDSA!

KellyTolmanCurtisWow...somanypeoplewithLymeDisease....IhavefibroandasfarasIknow,haveneverbeentestedforLyme....Dotheyhavesimilarsymptoms....KellyTolmanCurtisAlso,whatIwouldliketoseeismoreresearchonfibromyalgia,andwhetherornotitcanbetracedtobacteriaorviruses...IworkedasanRNfor22years,andwasexposedtoallmannerofinfectiousdieases;andIknowalotofnurseswhoalsohaveFibromyalgia....LymeFrenzStopturningablindeye.ThiswillbeEPIDEMIC.AndreaGarnerButtramDoyouseethelittleboyinmyprofilepic?He's4yearsoldforthepastyearshe'shadtosettleforaparttimemombecausetherearemanydayswhenLymeandallit'ssideeffectswin.RuthJames @KellyTolmanCurtis:Kelly.I'vebeensickforalmostelevenyearsnow,disabledforfive.MyinitialdiagnosiswasME/CFSandFibro.GuesswhatIhave?LYMEDISEASE.ToobadnoonewouldTESTmeforitdespitemyaskingforyears!ThinkallthatsocietyhasLOSTbylosingUS!KaetheMitchellIhavetwochildrenwithlatestageLyme,bartonellaandbabesiosis.TheywerenevertreatedbecauseweneversawanEMrashortick.Theyarenow,afteryearsofillnessandspecialistssayingtheyweremakinguptheirsymptoms,ontheirwaytohealththankstoanamazing,nonIDSAdoctor.ELISAswerenegative.Changeyourways,IDSA!EvaEklundIwishihadthemoneytopayyoumoreJennyGuzdekWhateveryoneelsesaidaboutLyme.Tryitoutforyourselfandprove30daysofdoxycuresthedisease.Letatickbiteyou,waitafewdaysgotoseeanundereducateddoctorforthetickbite,takeyourdoxyandseeifyou'rebacktonormal.Oh,andifyoudon't

getarashletusknowhowyoufeel!InregardstoLymeacuteandchronicournationisneedofseriouschange,you'remessingwithpeople'slives.Ihopeallofthese

messagesgetpastthesocialmediainternthatpostedthiscomment.StephanieMichelleKealyKellyibelieveyoumostlikelydohaveLyme.lookintoitasap...watchingthefilm"UnderOurSkin"shouldbeyourfirststop(it'sstreamingonNetflix).thencallyourPCPandasktobereferredtoaLymeLiterateMD.LizaCammeronAnEndtoyourcorruptDrs.Youhave

killedpeoplewithLymebywhatyou'vedoneandhaven'tdone.Changetheboard.Changetheguidelines.LoriCottonHobbsFamiliesandlivesarebeingdestroyedbecauseofignoranceaboutLymedisease.IfeveryoneatIDSAhadanimmediatefamilymemberwiththishorriddisease,thepoliticalissueswoulddisappear.ResolvetodowhatyouknowisrightregardingLyme.LymeisinNC!!!!MytickbitewastwoyearsbeforeIwokeuponedayandcouldn'twalk.IhavefourkidstotakecareofandI'vebattledthisforthepastyearandI'mstillnotwell.Ihavetopayformostofmytreatmentoutofpocket.DotheRIGHTthingandhelppeople.AshleyOrdeckiKelly,theydohavesimilarsymptoms.Iwastoldbyonedrthatifmytestscamebacknegativethatitwasfibromyalgia.Ialsohadthepointtestdone.Idon'tthinkthatdrwastestingforLymeatthattimeeither.IwenttoadifferentdrandgottestswithherandcamebackpositiveforLyme.Ialsoknowsomeonewhohadfibroformanyyears.Shehasitundercontrolnow.But,Icouldrelatewitheverything!InthebeginningIhadmostlymusclepainsandfatigueandastimewentonthepainspreadandsymptomskeptpillingon.YvonneForeyDowereallythinktheywillreadourcomments,wehopesobutsomethingsaysthispostwillbedeletedliketheydeleteLymepatients...weneedtocopythemallandkeepthem...WEareouronlyvoicewehave,onlyWEthathavesufferedendlessyearsofpainandsuffering,bankruptcy,lossoflives,jobs,friendsand

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familywhodontgetit...WEneedtomakesureweheard...somethingistellingmethispostnomatterhowprofoundwontevengetlookedat,letalonetakennoticeof...Iaswellasthethousandsofothershopeitdoesandthereisachange..butsomehowafteryearsoftryingeverything,dontthinkso..letsallcopythesepostsandsendthemtowhoeverwethinkwilllisten..whoeverthatmaybe..ourlocalnews,papersetc....Ipraywithallmyheartthatweallgetwhatwerightfullydeserve,validation!AlyssaRyversAdoptingthewww.ilads.orgguidelines.KathleenO'ConnellIagreewiththeabovepostsregardingtheIDSA'sdenialthatChronicLymeiskillingpeople,ruininglives,andtearingfamiliesapart.PLEASE!!AmandaBlakerLymediseaseawarenessinCAstateparks!!!!!!!!!!!!KellyLehmanACKNOWLEDGECHRONICLYMEanddosomethinghelpfulaboutitinsteadofturningyourbacksonusandquestioningareillness.weareallfightinghard.wewillnotbesilenced.ihavebecomedebilitatedoverthepast15yearsfrombeingborn,YESBORN,withLyme.worseyetihavehadtowatchmymotherdeterioratefromthisdiseaseandallthatcomeswithit.CHANGENEEDSTOHAPPENNOW.innocentpeoplearesufferinganddyingandyou,theIDSA,aredoingnothing.youshouldbeashamed.JillHessIwouldlovetoseeanaccurateLymediseasetest,andmoreresearchontreatment.PamHaistyMoreresearchonLymedisease.SueBushIhaveCDCLymepositivelabs.Igetsickalot.IliveinSEAZwhere"Wedon'thaveLyme",despitethefactthatIhailfromNWIwhichisanendemicarea.Iamforcedtoselftreat.Iamhighlyeducatedonthetopic,moresothanANYMDIhaveeverMET.Icannotgettreatmentormedications.WhatIwouldliketoseeisforMD'stoeducatethemselvesandstopreadingPharmaliterature,andstartreadingsitesontheInternet,theyshouldbebetteratthisthanme.BTW,IREFUSETOPAYanyMDthattreatsmelikeanidiot,orputstheirstaffortheirpatientsoreven

themselvesatriskdototheirselfimposedignorance.TheycanbillMedicarealltheywant,butnotadimecomesoffmydinnertabletopayfornothing,tobetreateddisrespectfully,nohelporevencompassion.BeckyLeeTogeteducatedaboutLymeDisease,thisincludestheCDC&IDSAtoo.Inevergottherash,Ididhowevergrowupcoveredinticks.CheriStinePublishedandintenseinterviewsofalldoctorsregisteredwILADS;admissionofalackofeducationandpropertraininginthemedicalschools(Isawatleast13specialistsover15yrswhogotitallwrongnearlykilledmewmedstosuppressimmunesystem);coordinationwresearchersinothercountries;regularsurveysbyLymepatients;checksandbalances;restraintonmedicalboardsbyallowingclinicaldiagnosisanddoctorjudgmentontreatment;therecommendationthatLymevictimsbeallowedtotakeresponsibilityfortheirtreatment;arecommendationtoinsurancecompaniestotrustdoctorswhentreatingLymevictims.Ihavemore,butthisisenoughfornow.Lymehasbeenanightmareformyfamilyandme,anditisinTexastoo!SueBushdo=dueLindseyDuvalChangeyourguidelinestoreflectSCIENCE.STOPgoingafterdoctorswhoaredoingtheirjobsandstophavingtheoneswhocarehavetogointohidingtoeffectivelytreatpeoplewhoaresuffering.AllowtreatmentsforchronicLyme,secondaryinfections,andpostLymesyndromes/autoimmunedisorderstobecoveredbymedicalinsurance.BettereducatethedoctorswhoareignorantaboutLyme.StoplimitingtreatmentoptionsforLyme.Pushforbetterdiagnostictesting(IgeneX),notthesillylittleWesternblotthatispronetofalsenegatives.NinaMooreTellthetruthaboutLymeandthatChronicLymeexists.IhavethesamestoryasallotherssufferingfromLyme,beingillforover15years,toldIhadCFSbyanInfectiousDiseasephysician,gotworseandfinallygotthecorrectdiagnosesofLyme,BabesiaandBartonella.Lostmy27yearteachingcareertothisdisease.BUTonceIgotthecorrectdiagnosesandstartedtreatmentIamnowgettingmylifeback.PeoplearesufferinganddyingbecauseofincorrectIDSAguidelinesanduneducatedphysicians.ThetimeisnowtouncoverandsharethetruthaboutLymeDisease.SusanHooverInterestingcomment,KimTarbox,about

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beingthewalkingdead.YearsandyearsbeforeIevenknewwhatLymewas,Icalledmyselfawalkingdeadperson.IusedtosaythatIwasworkingonhavinganervousbreakdown.IwassotiredIwouldfantasizeaboutsomeonetakingcareofme.Andnooneunderstoodme.HeatherShirkeyAcknowledgementthatLymeisachronicillness...whichincludeswhateveryoneelsehasalreadymentionedregardinghealthcare,insurance,choiceofDr,etc...LaurieDamsellFaheyIstartedwithafibrodiagnosis,chronicfatigue,tremors,nightsweats,lostmyabilitytotalk,facewentparalyzedastheyearswentontook8yearstogetsosevereIfellheadfirstdownthestairs.PumaOfThenorthAdoptinghonestLymediseaseguidelines.DuetoyourpresentguidelinesittookmeyearsandyearstogetcorrectlydiagnosedforLymediseaseandcoinfectionswhichcausedmeahugelossofincome,IwastedlotsofmoneyonuninformedMDswhilelookingforanswerswhilesufferingfromhorrificcripplingneurosymptoms.Lymediseaseisnothardtogetandeasytotreatnordoestwotothreeweeksofabxalwayscureit.DiseasedticksareineverystateoftheUSA.ThepublicandalltheMDsintheUSAneedtobetoldthetruthaboutthisdiseasethatisanepidemicandcanbepersistent.Vaccinationscancauseharm&betoxicaswell.WhatIwantfromtheIDSAin2012ismorehonestyintegrityandmorecompassion.Mylifewouldbedifferent&muchbetterifyouhadcorrectLymediseaseguidelines.InsteadIwasgivenunreliabletestingduetoyourguidelinesandtoldIdidnothavethediseasewhenIdid.CamAlteeBrown 1)EducationofallIDSAphysiciansofsymptomsofLymestartinginmedicalschool.2)HelpstopthemyththatLymeisonlyincertainstates.(IknowacardiologistwhoinfactispositiveheacquiredLymeinNorthFlorida.)AlysonCasePleasereevaluateyourstanceonChronicLymedisease.NodiseaseshouldEVERbecontroversial,andthefactthatchronicLymediseaseISshouldhighlightthegreaturgencyformoreresearch.JanReberHammettAfterbeingdiagnosedwithamyriadof'floater'conditions[fibromyalgia,arthritis,carpaltunnel,cysts,etc.]inthe2+yearssinceadefinite

diagnosisofLymeDisease,itsurewouldbegrandtoseeaseriousconcertedfocusonthelongtermdamageoftickbornbacteriatransmission,theillnessestheycauseandappropriatetreatmentbytheconventionalmedicinecommunity.LaurenClydeI'dalsoliketoseesocietyacknowledgechronicLyme.ItistruethatticksineverystateareinfectedwithLymedisease.PLEASEWorkwithILADStofindtreatmentsforthisdisease.Theguidelinesmustbechangedsothatinsuranceco'swillcoverthetreatmentofthisdiseaseaswell.Notonemoreman,womanorchildshouldbemadetosufferbecausetheycannotaffordtotreatthisterribledisease.ThedocumentaryUnderOurSkin,toldthetruthaboutLymediseaseandthisshouldbeacknowledged.Thankyou!GinnyPassettoManyhavestatedthismuchbetterbutbottomlineis,theIDSAneedstogetintenselyinvolvedwiththeissueofchronicLymeanditsmanydebilitatingcoinfections.Howcanyoukeepdenyingthisdiseasewhensomanyhavebeendocumentedwithit?BLOODTESTSTELLTHETRUTH!IhaveafamilymemberwhohasbeensickwithLymefor9yearsnowandhasbeenmorethanoncebeentestedandthebandsshow....Lymeanditscoinfections,despitetreatmentsreceivedovertheyears.WHATAREYOUAFRAIDOF?Doctorshavebeenstrippedoftheirmedicallicensesfortryingtohelppeople.Isn'tthatwhatmedicineissupposedtobeabout?NOTworryingaboutthepoliticalcontroversieswithinsurancecompanies.Tocontinuetodenytherearesomanywiththisdisease,reeksofaconspiracy.YouwoulddobesttoalignyourselveswithILADSandothersuchorganizationsdedicatedtohelpingpeopletohealthnothelpingthemtotheirdemiseordebilitations!!ChristinaGalloLyonsWhatI'dlikefrommysocietyin2012isfortheborreliaculturetesttobevalidatedbyseveralindependentlabs.OncethatoccurstherewillbenomorelyingIDSA.Areyouready??It'scoming,IDSAit'scoming.Andwhatfunitwillbetowatchallofyourdoctorsscrambling.BetterhireafewmoreattorneysandPRpeoplethisyear.LauraGriffisReynoldsMy5yearoldsonhasLymediseasefromthestateofTNwhere"thereisnoLymedisease"comeliveatmyhouseforaweek,seehowhefeelsandwhatwegothruwiththemedicine,diet...AndseeifyoushouldchangeyourguidelinespitifulandShameonyou!!

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PumaOfThenorth AdoptinghonestLymediseaseguidelines.DuetoyourpresentguidelinesittookmeyearsandyearstogetcorrectlydiagnosedforLymediseaseandcoinfectionswhichcausedmeahugelossofincome,IwastedlotsofmoneyonuninformedMDswhilelookingforanswerswhilesufferingfromhorrificcripplingneurosymptoms.

MelissaAntalIdon'tknowwheretobegin.MyhusbandandIandourtwochildrenwerediagnosedlastyear.IhavehadChronicLymeDiseaseforatleast27years.IwentfromdoctortodoctortodoctorandwasnevereventestedforLyme.IhaveeverysymptomandwhenIwasfinallytested,IwasCDCpositive.IfIhadknownbeforeIhadchildren,Imayhavebeenabletosparethemfromthisdebilitatingdisease.Now,wehavetofightfortreatmentandwehavetofightforrespectandwehavetofightdoctorswhoshouldknowmorethanWEdoaboutthisdiseasetoconvincethemthatthereevenissuchathingasChronicORCongenitalLyme.Howabouttakingoursideforonce?Wearesickandtiredandcouldusethesupportofanorganizationthatshouldbededicatedtohelpingpeoplelikeus!Peoplearedyingfromthisdiseaseandthousandsandthousandsofpeoplearewalkingaroundwithitandhavenoidea!Helpus...PLEASE!JenniferJustissYouneedtoeducatedoctorsregardingLymedisease.Weneedresearchandweneeddoctors.ChronicLymediseaseisafact.Itisanepidemic.Iwanttoknowwhatyouaregoingtodoaboutit.YvonneLeistcreswelldefinitelytimeforIDSAtoacknowledgethetruthaboutLymediseaseandit'scoinfections.YesIwasdepressedasIwastoldIwasbyanIDSAmemberwhorefusedtoevaluatemysymptoms,basingherdiagnosissolelyonELISAresults.FortunatelyI'vesincefoundaLLMDtotreatthesymptomsIhadwhenIwasseenbytheIDSAmember.Getwiththetruth...therearecountlessofnumbersofusoutheresuffering,somedyingbecauseofyourneglect!MargaretMcCormickPretoRodasMydaughter,now16,becamesickjustover4yrsagoshewasdiagnosedwithchronicmigraines,fibromyalgia,depressionandtolditwasallinherhead.ShehadLymetestingdone,butherpediatricianandneurologistcouldn'tagreeastowhetherornotshewas+...howcan2drsreadatestresultsodifferently?Thesepast4yrshavebeenhellforher.Shehassomebrightspots,butfewandfarbetween.InMayof2011shewokeupPARALYZEDfromthehips

down.WetookhertotheERwheretheywereconcerneduntilwetoldthemshewasbeingtreatedforLymedisease.Assoonastheyheardthat,theysentapsychiatristtotalktoher(andtous).AfterbeingsenthomewhileshewasSTILLparalyzed(andwithNOassistance)ourpedirecommendedBostonChildren'sHospitaltheytoowereniceuntiltheyheardshewasreceivingIVantibioticsforLymeoncetheyheardthat,theytoosentthepsychiatristtotalktoher(andagain

tous).Theytoldusshehadconversiondisorderinotherwordsshewassubconsciouslymakingherlegsnotworksoshecouldavoiddoingsomethingshedidn'twantto.....mindyou,sheisonhomeboundasherbrainfog,concentration,bodypainandfatiguearetoomuchforhertoattendschool,shedoesn'tparticipateinany

extracurricularactivitiesandrarelygoesout.Justwhatwasshetryingtoavoid?Andhowcananydrintheirrightmindsendaparalyzedpersonhomewithnoassistance?Thankfullywehadaportabletoilet,wheelchair,walker,etcleftfromwhenmymomwasill.Wehavelittletrustleftinthemedicalcommunityandourdaughter,hasnoneleft.SherecentlyhadhorribleacidrefluxthepainfromitwasunbearablesherefusedtogototheERbecausesheknowstheywilldolittletonothingforher.MyhusbandandIfinallycalled911again,theEMT'swereveryhelpfuluntiltheyheardshewasbeingtreatedforLyme.Oncetheyheardthat,theydecidedthatshewashavingananxietyattackandtooktheirtimegettingustotheER.ThankfullyanERdrlistenedtohersymptomsheruledoutabloodclot(duetoherPICCline)andthentriedtreatingherforacidreflux.ThemedicalcommunityandIDSAMUSTWAKEUPandrealizethatLymeisaSERIOUS,CHRONIC(forsome,notall)illness!Newtreatmentguidelinesneedtobeestablished,fundingforresearchmadeavailable.TheLymecommunityisTIREDofbeingtoldtheyhaveotherillnessessorbeingdeniedtreatment!ChronicLymeisREALifyoudon'tbelieveme,feelfreetocomevisitwithmydaughter.Shewillchangeyourmind.WAKEUPIDSAandhelpallwhosufferfromthisawful,tricky,chronicformofLyme.

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AmyTopperWatkins AcknowledgementthatchronicLymeexists.Therearesomanypeoplesufferingandbeingtreatedliketheyarecrazybecauseyourefusetoacknowledgeitsexistence.Thinkaboutsomethingotherthanyourpocketbooks.Lookatthefacesofthesick,my8yearoldsonbeingoneofthem,anddosomethingtohelpthem.

GinaMageeBecauseofyourselfinterestsandclosedminds,IDSA,youareblatantlyruiningmanypeople'slives,andthatincludescaringdoctorswhotrytotreatpeoplewithLyme.Whatareyouafraidofthatyoutreatpeoplethisway?Thereisnodisgraceinupdatingyourresearch,guidelines,etc...Butthereisdisgraceinholdingfasttooutdatedwaysofthinking.And,notonlythat,youareperpetuatingthesefallaciesaboutLymediseaseattheexpenseofmanyothers.Whathappenedto"firstdonoharm?"Ifyouwanttodoanything,whydon'tyouupdateyourguidelines,educatemedicalstudentsanddoctors,andstopgoingaftergooddocs.Youarenotonlykeepingpeoplesick,butyouarecreatinglivesforthemthatarebecomingunbearablephysically,mentally,spiritually,financiallyandthelistgoeson.ItwouldbemywishthatthemembersoftheIDSAespeciallytheperpetuatorsoftheLymeguidelines,beheldaccountableandbemadetopaydamagestothoseaffectedbyyouractions(becausetheyseemcriminaltome).IwishIcouldunderstandyourmotives.Whyareyoumakingsomanypeoplesuffer?McRaeHarrissLymediseasetruth/help!MargaretMcCormickPretoRodasOnefinalcommentYOU,IDSA,holdthehealthandwellbeingofmydaughterandthousandsofothersinyourhandsDoNOTfailthem,pls!BilliejoMillerRushADMITLatestage/chronicLymediseaseneedstoberecognized!!andyourtestingisanEPICFAIL!!!LizaCammeronUnderOurSkinGoodMorningAmericaNationalCoveragewww.youtube.comNationalnewscoverageonABC'sGoodMorningAmericaonawardwinningLymeDiseasedocumentary.Thisfilmchroniclesthecontroversyanddebatessurrounding...AlanRobisonAnIDdoctorgavemeaWesternBlotafterIdemandedthatheincludeitinthebatteryoftestsheoffered.Itwastheonlytestthatcameback

positive:Tohisdismayanddisbelief,CDCpositive!Eventhen,herefusedtoacknowledgetheobviousbecauseIdidn'tpresentarashorjointpain.AfteryearsofbeingtoldIneededpsychiatrichelp,Ithankedhimandfoundamoreprogressivephysician.JCHoskinsfortheISDAtoacknowledgethatmanypeoplearegettingsickfromtickbites.Peoplearesick

anddyingbecausetheorganizationsdesignedtohelppatientsarenot.Educate.KdLymeHonest,accurateandunbiasedresearchofLymediseasethat'snotintendedforthesolepurposeofprovingyourselvesright.ChargesofcrimesagainsthumanityforWormseretalwouldbeniceaswell.JoniBoydPleasefigureoutthe

chronicorlatestageLymeisaREALillnesshurtingREALpeopletakingawaytheirlives,moneyandrobbingthemoftheirhealthandfaithindoctors.IamanurseandIhavewatchedmycheerleaderdaughtergofromanA/Bstudentinhighschooltohavingtowithdrawfromschoolmissingherprom,homecoming,friends,EVERYTHING!!!!!Wearespendingourlifesavingstryingdesperatelytogetherwell!!!IDSAGETADOSEOFREALITY!!!!!ThaneLymeIwouldliketoseeyoucomecleanaboutyourcoverupofChronicLymeDisease.TracyHansYes,IwouldcheertothehighheaveniftheIDSAtookanhonest,clearlookathowmanyfolksaretrulysufferingfrominfectioustickborneillnessesandstarttoeducateIDSAdocsappropriately.AnhonestrevisionoftheguidelinesthatlooksatALLreputableliteratureoutthere,wouldpreservethehealthofmillions.ThaneLymeIwouldliketoseeyouatleasthavethecouragetonotdeletethisthread.CeceliaCecePriceJonesGreaterlistening&backingofthosemembersofsocietythatareafflictedwithLymedisease&/orcoinfections&thedocswhotreatthem&bringthembacktohealth!

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JDavidKocurekTorecoverpublictrust,thesocietymustdevelopguidelinesforandenforceintellectualhonestyinallpublications,communicationsandanyotherendeavorsormoresimply,betruetothescience.AmyTopperWatkinsAcknowledgementthatchronicLymeexists.Therearesomanypeoplesufferingandbeingtreatedliketheyarecrazybecauseyourefusetoacknowledgeitsexistence.Thinkaboutsomethingotherthanyourpocketbooks.Lookatthefacesofthesick,my8yearoldsonbeingoneofthem,anddosomethingtohelpthem.WilliamJonesHopefullyRonPaulwilldoawaywiththemifheiselected:)MonicaZmudaIhavehadLymediseaseforover4years,multipletreatments.PositiveBlotandcoinfections.RecognizeLymediseaseinthechronicform.Iwasanurseforover15years,InowcannotpracticeduetoLymeDisease.IthinkaHUGElawsuitshouldbebroughtupagainstIDSAandthemoneybereturnedtoallofus,plusmoreforthesuffering!!!IprayyourfamilynevergetsafflictedwithLYME!Onlythenwillyoutrulyunderstand.Wouldyouriskyourlifeandtestthetheory?Thereareunlimitedamountsofinfectedticksineverystatewaitingfortheopportunity!!!!JessicaGontarzDurfeeIwantsomeonetoacknowledgechronicLyme,formynineyearoldson'ssake.JoshCutlerIwouldlovenothingmorethantoseeanonbiasedreviewoftheguidelinesforLymedisease.IwouldalsoliketoseeproofandevidencebasedresearchagainPROVINGthatChronicLatestageLymediseasedoesnotexist.Clearlysomanypeoplearesuffering.Lookatthis!!IsthisinTHISMANYPEOPLESHEADS?Idon'tthinkso.Mostofushavelostourcareers,lives,homes,familyandsomehaveevenlostlives.Allbecauseofwhat?Wearenotheretocauseissues.Wejustwantfairandjusttreatment.ThiswillNOTstoptillwehavepropertreatmentandresearchforacure.ShowusPROOFPROOFPROOFfromunbiasedresearchersthatwearemakingthisup.Areyoureallygoingtosweepthousandsofpeopleundertherugtodie.

Whatifthiswassomeoneinyourfamilyfightingfortheirlife?VanessaBakerSimonIwouldlovetoseemoresensitiveandaccuratetestingforcoinfectionscarriedbyticks.CharlieHenryBladornPlease,please,pleaserevisitChronicLyme.Toomanyaresufferingandcryingforhelp.Wedon'twanttobesick,weWANTtobebetter.Withanearlydiagnosisthetreatmentisfairlybasicandnotcostprohibitiveatall.Insteadthereissomuchignoranceanddenialthatthishasturnedintoanepidemicwithuncountedfrustratedsufferers.ThaneLymeLymeDiseasehasdestroyedmylife.It'stimeyouputtheinterestsoftheworld'ssocietyaheadofyourowncorruptedIDSASociety.AngelWilliamsSpellhaha......anditwouldbegreattogetaresponseafteraskingthisquestion...c'montelluswhatuthinkaboutourresponsesShawnWatkinsIwouldliketoseeanacknowledgementofChronicLymeDiseaseandtheeffectivenessoflongtermantibioticsinfightingitbyyoursociety.KristinMartinDosomethingaboutLyme.Peoplearelosingtheirlivesandlivinginmiserybecauseofitandit'scompletelyunnecessary.JoshCutlerGuys,basedoffpreviousthreads/commentsbeingdeleted.Iwouldsuggesttakingascreenshotforyourselfsothatwecanshareallofthisincaseitdoesgetdeleted.ToddMeese 177+commentsin10hours.Areyou"Drs"listening?WEAREN'TGOINGAWAY!WEWILLNOTSITQUIETLY.LisaHiltonIwouldliketoseeallthese"invisible"illnessestakenserious.Wehaveacountryhereofsickpeopleandignoringusisinhumane.Weneedresearchandweneeditdonebyunbiasedpeoplewhodon'talreadyhavetheirmindmadeupthatwearealljustcrazy.Childrenaresick,peoplearedying,manyofusarecompletelydisabledatveryyoungages!It'stimetoadmitthatthereisanepidemicandputegosorpastlearnedconceptsasideandstarthealingpeople.

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JenniferBaysToombsStopdamningpeopletoalifeofpainanddisability.StartbecomingapartoftheLymediseasesolution,insteadoftheproblem.LisaHiltonAlsoIthinkit'stimetogetridofteststhatdon'twork.Iftheyareinaccuratethenitshouldbeacrimetousethem.ManydrshavenoideahowinaccuratetheseLymetestsALLare,andtheytellyouyoudonthaveLymebasedonthem.TheCDCevenstatesthattheyarenottobeusedfordiagnosisbutthatswhatdrsdo,becauseyouencourageitforinsurancereasons.Notfairtopatients.Startworkingforthepatientagainandnottheinsurancecompanies.TinaSpockKopcikTheHippocraticOaththatyouhavetakenshouldnotbeignored.Therearetoomanyofuswhoarenot"mentally"ill,butphysicallyillfromabacteriathatyoudownplayandturnablindeye.Howmanyothershavetosufferfromthisplaguethatiscontinuallysilenced??Iwantthelast4yearsofmylifeback,beforethisnightmare,whenIwashealthyandstrong.NotnowwhereIstillfacedoctorswhosay,"itcan'tbeLymeanditismostcertainlynotMS."Okthen,whatiscausingmybrainlesionsandproblemswithmynervoussystem.MyMRI'sandbloodteststellthestoryforwhichyouchoosetoignore.ThanksIDSAformakingalaughingstockoutofthosewhohavebeenunfortunateenoughtohavebeenbittenbyatick.Bytheway,tellyourIDSAbuddiestogettherestorystraightwhentalkingtopatients.Iknowit'sreallyhardforyoutofathomthatadeermightstrayfromMassachusettsintoConnecticutwithaninfectedtickonit.HowaboutstartingfromscratchandtestforallLymebands?Ibelievethatwouldbeagreatplacetostart.Ifthatisnotsufficient,let'sgetgoingonabettertest.OurchildrendeservebetterthantobedisabledbyabacteriasuchasLyme.KevinSThomasIwastreadedbyanInfectiousdiseasespecialistwhenIwasstdiagnosedwithLyme..ShestatedthatthereisnosuchthingasChronicLymeandthatsinceIhadamonthsworthofIVantbioticsIwascured.Ididn'tknowanybetter..TwomonthslaterIrelapsedandamnowsickerthenIwasinthestplace!TheLymetreamentguidelinesneedtobechanged!AndiMernaMccormickAdmitchronicLymeexistsand4weeksofantibioticsareNOTenough!

CourtneyLynnLymediseasehasruinedmylifethusfaratonly26yearsofage.Iwentundiagnosedforyearsandsufferedneedlesslyduetotheimpropertestingandignoranceofsomanydoctors.Ithinkyoualreadyknowwhatitisthatweallwant.Itstimeyouallstepuptotheplateanddotherightthing.Weneedproperstudiesdoneforeffectivetreatmentofthisdisease.SaraStegnerLehnerthetruthaboutLymedisease,chronicLyme,andcoinfections.Ireallydonotenjoywritingacheckouttomyhealthinsurancecompanyeverymonthandnothavingadoctorinmy"network"admitthereischronicLyme.Asidefromlivingalowerqualityoflife,we'regoingbroke.JeanneBainIagreewithLisaHilton.Taketheseinvisibleillnessesseriously.Lyme,Bartonella,PANDAS,etc.needtohavemoneyspentonresearchforallofthem.Congenitalinfectionsneedtobeexploredandnotdiscounted.WhenmysonwashospitalizedforsuspectedBartonella,theIDdocsdidn'tevenbothertotesthim.Nordidtheyexploretheideathatmyson'sillnessiscongenital(whichitis).Theyscrewedhim.SCREWEDhimbytreatinghimfor24hoursandsendinghimhome.SubLymeContenderWAYTOGOLYMIES......whosaidwedidnthaveavoice.......heyidareutoaskusanotherquestion...ihavetrulygottentickled...andlovingit...........MichelleDeLiberoOrdeckiWhatIwouldliketoseefromyouisforyoutowakeupandstopbeingsostupidaboutCHRONICLYMEDISEASE.Twentyonedaysofantibioticsisridiculous.Getyouracttogether.SherriElsworthYouneedmorepediatricspecialistdoctorsthatourLymeLiterate.BetteryetlettheLymespecialistdotheirjob!!Letthefamily'shaveinsurancethatcanbeusedtopayLymespecialistfortreatment.Nothavingfamily'shavetomoveinwiththereparentsorgettingasecondorthirdjobjusttopayfortheongoingcostoftreatment.IagreeadiseaseshouldNEVERbecontroversial.Youaskedsoyougottruthfromallthepeoplewhohavetosufferyourinadequatetestingprocess!!!JordanaPilmanisPleaseacknowledgetheexistenceofchronicLymeandthedamageitisdoingtopeople'slives,theamazingsufferingitisinflicting.PleasehaveIMPARTIALdoctorsreviewthesciencebetweenbothIDSAandILADSstandardsofcarenotjustwhatthe

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StefanieManning ReconsideryourguidelinesfortestingandtreatmentofLymeDisease.Inearlylostmylifebasedonyourflawedpositioning....Almost$800,000later,Ifinallyhaveasomewhatnormallifeback,withpain,weaknessandotherlastingsymptomsthatmadethis29yearoldcheerleaderanddancerasincapacitatedasan80yearoldatage26.ThiscouldallhavebeenavoidedifyourguidelinessupportedtheTHOUSANDSofsuffers,scientists,anddoctorsthathavebeensharingtheirexperiencesandscientificdatacollected.Openyoureyesandearsandrealizepeoplearedyingonyourwatchandgravelysuffering...ACTNOW...please...

docswithamonetaryinterestinIDSArecommendedtestkitsandpharma/insurancecompanykickbackssayis"science."Lymediseaseisspreadingandisbeingmisdiagnosed.Peopleandinsurancecompaniesarepayingthousandsofdollarsforcareformisdiagnoseddiseases.Justbecausetreatmenttakesawhiledoesn'tmeanitisnottherighttreatment.PleasealsolookattheLymeinfectionstatisticsincaninesinColoradoandfindoutwhatvectorisinfectingthedogs,becauseit'sinfectingthepeople,too!PleaseeducatedoctorsthroughoutthecountrythatLymeisnolongergeographicallylimited.PleaseeducatedoctorseverywherethatLymeneedstobetreatedbecauseoverthelongterm,itisdegenerativeandprogressive.Whyareyoudoomingsomanytosomuchsufferingbyrecommendingtwotieredtestingthatreturnssomanyfalsepositives?Weneedbettertests!WeneedtohaveacknowledgementthatLyme&coinfectionsrequirelongtermtreatment!JenniferSchoonmakerIhaveaninfectionthatisverydifficulttotreatandhastakenoverayeartofind,firstpresentedasQfever.Iamnotparanoid,amwelleducatedanddonotwishtobeinaLymewar,IcannotbegintotellyouhowIhavebeentreatedbythemajorityofthetwentydoctorsIhadtosiftthroughtofindsomeonetorunthecorrecttesting.Ihavelostalmosteverythingoffiscalvalueinmylife,thereneedstobesomerevisionoftheseLymeguidelinesandthespreadofinformationneedstobemoreefficient.ShannonDevineIwouldliketoseedoctorsallowedtotreattheirpatientswithoutinterferencefromthosewithdifferentopinions.Iwouldliketoseecommonsense.AnyonewithLyme:pleasetryLiquidSamento.Onlythingthathasworkedformeandmyteenager.Igetnokickbacks,onlythehopethatatleast1person

willbehelped.Googleitandfindadoseschedule(1droptostart).YouallareasstrongaswarriorsandanyonepromotingIDSA'sstanceonchronicLymeshouldbeashamedofthemselves.StefanieManningReconsideryourguidelinesfortestingandtreatmentofLymeDisease.Inearlylostmylifebasedonyourflawedpositioning.2weeksofantibiotic,thenrelapse.30days...relapse.14hospitalizations,3ICUstays...doctorssawmyLymerashes/bullseyeandwerescaredtodeathtotreatme,sothey'dthrowmetothenextdoctorand"specialist"

untiladoctorknewmyrashandsymptomswereLymerelated,hadpositivebloodresultsaftermonthsoffalsenegativetests,andsavedmylifewithlongtermantibiotics.Almost$800,000later,Ifinallyhaveasomewhatnormallifeback,withpain,weaknessandotherlastingsymptomsthatmadethis29yearoldcheerleaderanddancerasincapacitatedasan80yearoldatage26.ThiscouldallhavebeenavoidedifyourguidelinessupportedtheTHOUSANDSofsuffers,scientists,anddoctorsthathavebeensharingtheirexperiencesandscientificdatacollected.Openyoureyesandearsandrealizepeoplearedyingonyourwatchandgravelysuffering...ACTNOW...please...

JordanaPilmanis **Sorry,ImeantfalseNEGATIVES,notpositives.ThetestingreturnsfalseNEGATIVES.ShannonDevineLLMDsandothersriskingtheirlicenseandreputationsandanythingelsetotreatus,youaretheheroes.StephanieSpicerPleaseacknowledgetheexistenceofchronicLymediseaseandmakeitlessthanimpossibleforustogetthemedicalhelpweneed.Provideprotectionfordoctorswhohelpus.Changeoutdatedlaws.Admiterror.

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RandiBethEinzigIwasjustlookinginthemirrortodayfeelinglikeIwashavingaseizure!IsaidoutloudIcantbelieveIhaventkilledmyselfIhavehadanelectricalheadachefor5years!Ihavehadaheadacheforalmost2,0000days!IhavebeeninfectedwithLymefor10yearsandfoundoutlastyearafterseeing38Doctorsandanexpenditureof$110,000.Ihavepaidoverhalfofthatandwasasinglemotherjuststartingmylife.MydaughterusedtositinherfirstgradeclassroomandfearthatIwoulddiebecauseIcouldnotstandupanymoreorgethertothefrontdoorofherschool.IwasoneofthetopgymnastsinthestateofWisconsinandcompetedattheNationallevel.Iusedtorunmarathons.IamamentalhealthprofessionalandendedupcrawlingonmyofficefloorwithmyclientsbecausemyBPwassolow!ItiscriminalthatIliveintheUnitedStatesandhavehadtoexperiencethiskindofagonyandtorture.IfIwereadogIwouldbehavebeendiagnosedandwelllongago.Mywishisthatyouwouldbehonestwithyourselvesabouttheneedsofhumanbeingsthatareill.Lookatthefacts.TherearehundredsofthousandsofusinsearingpainManyarechildrenLookatyourchildtonightandimagineifsomethingsoviolentasLymetookyourchildshealthfromthemLookatmybeautifulbabyinthepicture.Itook14antibioticsadaytosafeguardhimfromLyme,Babesia,andBartonella.Praisegodheishealthy!!Timetowakeupandstartcaringaboutpeople!Lifeisaboutmorethanadheringtodatedguidelinestogreaseyourplate...WhereareyourEthics?Withoutethics,youhavenothing!AmberHodgeAkerPleaserecognizetheseillnessessothesepatientscangetthetreatmentstheyneedanddeserve.IhavetwofriendswhosufferfromLymeDiseaseandtheytravelacrosstheUStryingtofinddoctorswhocanandwilltreatthem.JulieHowardSeemsabitabsurdtoseethisquestionposedbyIDSAandperhapsevenmoreabsurdthatIwouldbothercommenting...butsittingidlybywouldn'tberight,either,so...IDSA,thankyouforasking.PleaseacknowledgethesufferingofpeoplewithchronicLymeinfections.Pleaseackowledgetheimprovementsandremissionofmanyduetoveryexpensiveandextensivetreatmentbyonlyahandfulofcompassionatephysicianswhoarewillingtotakeachance.Mayyouneverhavetoexperiencefirsthandthepainandsufferingofthisveryrealdisease.

TishHealyI'dliketoseeyouadmittheTRUTHaboutchronicandrecurringLymedisease.Whydon'tyoutryworkingwiththeLymeliteratephysicianstohelppeopleinsteadofdenyingthatsomanyaresick.We'velostjobs,homes,marriages,relationshipsfromthisnastydisease.Don'ttellusitdoesn'texist.Weliveiteveryday!!!KellyMairsonTostopdenyingthatchronicLymeexists&lookforacuretohelpthemillionsofpeoplesufferingwiththis.IncludeILADSguidelinesinyourrecommendations&suggestdoctorsgothroughtheILADStrainingprogramsotheycanproperlytreattheirpatients.DebiCollinsPleasediagnoseandtreatmeandmyfamilyexactlylikeyouwoulddiagnoseandtreatamemberofyourownfamily. StephanieSpicerWearetoomanyforyoutopushthisthingunderthecarpetanymore.DebLabarberaChronicLymeDiseaseDOESexistwhetheryouwanttoadmititornot.Iamlivinganddyingproof.HowcanyoubesoclosedmindedNOTtoeducateyourselvesfurthertohelpthosewhoneedtobediagnosedandtreatedproperly?Childrenaredying.Youngadultsaredying.Adultsaredyingallbecauseofyoubrushingourillnessoffassomethingthatdoesnotexist.Ifyouhadsomeoneinyourfamily,alovedone,afriendorifYOU,yourselfsufferedfromthisdiseaseIamconfidentyouwouldlookatthisinacompletelydifferentlylight.TurnyourBRIGHTlightsonandopenyoureyesandminds!!!!Thisisoneofthefastestgrowingdiseasesthatisdebilitatinglivesandtakinglivesaway.Youshouldbeashamedofyouractions.Iwastreatedin2004for6weeksbyanInfectiousDiseaseDoctorwhoendedmytreatmentstatedIwasexperiencingresidualeffectsofLymedisease.Overtheyears,Ibecameincreasinglyill,seeingcountlessspecialistsandspendingthousandsofdollars.Allthe'specialists'didwas'bandaidemypainandillness...comingupwith'other'diagnoses,butNEVERconsideringitwasstillLymeinmysystemeventhoughItoldeverydoctormysuspicionthatitwas.Now....inlatestagechronicLymediseasethatwasPROPERLYdiagnosed,Ihavenochanceofbeingcuredonlypossiblyremission.Iamonly48yearsold.LookatwhatYOURridiculousdecisionshavedonetous...Just

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look.Openyoureyesandminds.Thinkofothers.Thinkoutsidetheboxabit.EDUCATEYOURSELF!KarieThulonKlimForyearsonendIwasreassuredmysymptomswere"nothing."IfnowweknownothingmeansLyme,thennothingissomethingand"nothing"trulycouldbeincludedonthemedicaldiagnosticdecisiontree.Nothingnowhasnewmeaningofchronicandlatestagesignificance.Everyoneneedstoknowwhatnothingreallymeansandgetproperrespect,attention,andtreatmentforit.TishHealyAresponsewouldalsobewelcomed!KimFinchSickforyears&Drs.testingformanythingsBUTLyme.Oncechronicallyill,IhadgottenBellsPalsyandtestedpositiveforLyme.Onandoffantibioticsformanyyears,itwastoolate&stolemylifeaway.Manyofusdon'thavethe$togoaboveandbeyondwhattheinsurancecompanieswon'tpayfor.Weneedresearch&resultsthatwillhelpus!Pleasereconsideryourguidelinesfortreatment!TishHealyHey,I'mcurious.Whenis"WorldLymeDay"??SubLymeContenderhahatishthatswhatimscreaming.....aresponsewouldbenice.StephanieVandagriffToredotheguidelinesonLymeDisease!StopbeingclosedmindedandselfservingandhelpourLymecommunity!SubLymeContendertheycouldstartbysayingtheyweresorryforbeingmoreinterestedinmoneythanthepeoplethesworetoprotect...andthentheycould"getonthecommonsensewagon"withtherestofus....itsnotthathard.....itskindahardtobelievethatwerthecrazyones...idontknowhowtheysleepatnight...iwouldbeashamedofmyselfLindaEricksonIamappalledatthelevelofmisery,physical,emotional,andspiritual,thatsomedoctorswillsay"it'allinyourhead".Whereisyourcompassion?Myferventwishisthatalldoctorswouldlistentoandtrusttheirpatients,andwouldbecomeeducatedaboutchronicLyme.Openyourmindsandyourhearts,PLEASE!!!SubLymeContenderanditsoundstometheyhavebeeninfectedsincetheycantretainanynewknowledge....*currentresearch*

BenjaminMahoneyIama28yearoldmalewhohaslosteverythingandlivesondisabilitybecauseofyour"guidelines"onLymeDisease.IwouldliketoseeYOURsocietyadmitthetruthaboutLymeDisease.AlyssaKnappTheIDSAmustrevisititsLymediseaseguidelines.ChronicLyme/PersistentLyme/LateStageLyme...whateveryouchoosetocallitisveryrealanditexists.Itistimetostarttreatingpeoplewhoareveryillwithaveryrealdisease.Longtermtreatmentworks....Iamliving,walkingproof.Ithastaken41/2yearsofconsistenttreatmentbutIamlivingmylifeagain.Ibegofyou...forallthepeopleIknowandlovewhoarenowsuffering....please,changeyourtreatmentguidelines,findbettertestingandstarttreatingeveryonewiththerespect,kindnessanddignitytheydeserve.LysandraCookIwouldlikeyoutorevisityourstandonLymedisease.MylifewaschangedforthebetterwhenmydoctorfollowedtheILADSguidelinesratherthanyours.Ittookme5yearsandcountlessdoctorstogofrombeingnearlydisabledandonmanymedicationstolivingmylifeagain.WendyVogtIDSAshouldstandformorethanIDon'tSeeAnything.YouarecurrentlyresponsibleforanuncheckedepidemicintheUS...dotherightthingandstartbeingwhatyournamestandsforbetheexpertsonadiseasethatisgrowingfasterthanAIDS.Startnow.SubLymeContenderdoesanyonegotthissavedincasetheydeleteit?KimDeSantisGoodwinOurlivesarebeingtakenfromusthisillnessisalivingnightmare.10drsandtoldMS,fibromyalgia,depression,painmanagementandthelistgoeson.Gaveittomydaughterduringpregnancy.Iwassymptomfreefortwoyearsnobullseyerashandslowonsetofsymptoms.Therearesomanysymptomsthatarenotevenmentioned,coinfectionsnotmentioned.Healthcarenotcovered,Lymedrslosingtheirlicensewhentheysavelives.peoplearedyingorwantingtodiefromthis,losingalltheirmoneytryingtofindoutwhatswrongandnocoverage.Whatishappeningiscriminalandourlivesarebeingrobbedandsomanypeopleknowthetruthandhideit.Fdahasenoughmoneypleasedontruinlivesformoney.Weneedfundingforacure,knowledgeforpeoplewhoarestillundiagnosedwalkingaroundthinkingtheyhavesomethingtheydonothave.Thepublicneedsthetruth,drsneedthetruthandwe

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DebbieRay YouallneedtodropyourstanceonLymeDiseaseandallthesillypoliticsinvolved.Ihavesufferedfor10yearsandmyInfectiousDiseasedoctorwon'ttreatmewithIVantibiotics.IcontinuetobesickandnooneseemstocarethatIcan'ttakecareofmyselformysonallbecauseofthishorriblediseaseyousaydoesn'texist!!!SHAMEONTHEIDSA!!!!!

deserveitjustlikeifsomeonehascancertheygettreatment.OnemonthofantibioticsisacureforchronicLymeyouhavegottobekiddingme.IfyouhadchronicLymeandwentthroughthishellyouwouldseehowfoolishandignorantthatisandmakeyouwonderwhatsecretsarebeingkept.Thepeopleinchargeoftheseguidelineshaveontheirshouldersdeaths,brokenfamilies,losthomesandunemployment,millionslostqualityoflife,kidslosingtheirparentsasanactivepartoftheirlifeforeverchangingfamilies.Imsoangryilost6yearsofmylifebeingsickeverysingleday.Tryhavingtheflufor6yearseverydayandwanttokeepliving.Somehavelivedwiththisalifetime.OurLymedrsaresavingourlivesandtheyhaveawarmplaceinheavenwaitingforthemsomedayforsavingus.educateanditsallproven.Helpdontkill. LucretiaPerilliPleaseadmitthatmembersofyournonprofitorganizationfalsifiedinformationaboutaccuratetestingforLymediseaseinordertofalsifytheLymevaccinetrialsoutcome(whichwasacompletefiasco).Thishappenedyrsago,causingamassivedominoeffectyouputoutfalsifiedinformation,brainwashedthemedicalcommunityintobelievingit,andsoon.Andnow,millionshavebeenmisdiagnosed,neverdiagnosed,nevergivenadequatetreatments,nevertoldthetruth.Millionsareseverelyillandmanyhavedied.Endless,needlesssufferingallduetotheextremelyquestionabledecisionsthatwereandaremadebyyourprofessionalnonprofitorganization.PleasefinallyadmitthatlatestageLymediseaseexists,isfarmorecomplexthanaswollenknee/achyjointdisease(andisNOTpostLymesyndrome),involvesvirtuallyeverybodilysystemincludingthebrainandCNS,andconsistsofrelatedbacterial,viral,fungal,mycoplasmal,prion,etc,infections,whichareseverelyincapacitatingandworkinginconjunctionwithoneanothersynergistically.YoucouldcallitHIVnegativeAIDS,whichyouknowitis.Doyourealizejusthowmanylives,includingmine,thatyouhavepermanentlyRUINED?Thinkaboutthat.How

canyoupeoplesleepatnight?Oh,that'sright.Iguessthatyoucannotbewoundedwhenyou'vegotnoheart.HallieRichwine @subLymecontenderscreenshotsofallcommentsuntilminerightthissecond.LauraDeCostejustPLEASE...pleasehelpus.

CathyTuttyIwouldlovetoseeIDSAreallyexamineautoimmuneandtickbornediseaseconnections.Iwouldloveevenmoreifyouwouldlookforsomeprotocolsandendorsesometreatmentforthosesufferingfromtheseinsidiousdiseases!StephanieVandagriffGoodjobHallie!StephanieVandagriffWe

shouldsendthislinktoallnewsstationstogainnationalattention.ChrisKasperIwouldlikefortheidsatostoptryingtosweepLymediseaseunderthecarpet.Thereistoomuchsuffering.LisaHiltonIwouldalsoliketoseesomeonestudytheconnectionsbetweenallthesenewmysteriousillnessesthatarepoppingup.Isthereanystudiesbeingdonetoseewhatcausesfibro,chronicfatigue,ms,parkinsons,alzheimers,lupus?Sincenoneofthesehaveacausativefactor,couldtheconnectionsbeborrelia?CoryBoydMysister'sbeensickwithLymediseaseforoverayear,andit'sruiningherlifeandhurtingmyfamily.IwouldlovetoseeactualrecognitionofchronicLymediseaseandanactualtreatment.DebbieRayYouallneedtodropyourstanceonLymeDiseaseandallthesillypoliticsinvolved.Ihavesufferedfor10yearsandmyInfectiousDiseasedoctorwon'ttreatmewithIVantibiotics.IcontinuetobesickandnooneseemstocarethatIcan'ttakecareofmyselformysonallbecauseofthishorriblediseaseyousaydoesn'texist!!!SHAMEONTHEIDSA!!!!!

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LucretiaPerilli PleaseadmitthatmembersofyournonprofitorganizationfalsifiedinformationaboutaccuratetestingforLymediseaseinordertofalsifytheLymevaccinetrialsoutcome(whichwasacompletefiasco).Thishappenedyrsago,causingamassivedominoeffectyouputoutfalsifiedinformation,brainwashedthemedicalcommunityintobelievingit,andsoon.Andnow,millionshavebeenmisdiagnosed,neverdiagnosed,nevergivenadequatetreatments,nevertoldthetruth.Millionsareseverelyillandmanyhavedied.Endless,needlesssufferingallduetotheextremelyquestionabledecisionsthatwereandaremadebyyourprofessionalnonprofitorganization........Doyourealizejusthowmanylives,includingmine,thatyouhavepermanentlyRUINED?Thinkaboutthat.Howcanyoupeoplesleepatnight?Oh,that'sright.Iguessthatyoucannotbewoundedwhenyou'vegotnoheart.

LisaHilton "Alltruthsareeasytounderstandoncetheyarediscovered;thepointistodiscoverthem."~GalileoAshleyOrdeckiYeah,SubLyme.Iscreenshotitall!MadisonLewis @Tish:womenposted'LymeMonth'onthissite.Thepostwasdeleted,andthe2womenwerenolongerabletocommentonthispage.Doesthisnotspeakaworldofvolumesaboutthelackofintegrityandthedegreesthis'SocietyofDrs'willgotoinordertosquelchtheveryexistenceoradvocatingtheexistenceofChronicLymeoranyoppositiontotheirlucrative'Guidelines'.DonnaHarrisPruittLymediseaseisnolongeraboutscienceorsickpeople.Itisaboutmoney,powerandgreed.Yours,bigpharmas,insurancecompanies.IwanttoseeyouliveuptotheHippocraticOathyoualltookwhenyoubecamedoctors,andstopworryingaboutliningyourpockets.AcknowledgeLymeDiseaseinallofitsfforms,insteadofignoringthesciencethatisinfrontofyoureyes,andifyouareunwillingtotreatus,letthefewdoctorswhoarewillingtotreatus,todotheirjobsnadstoppersecutingthem,andultimatelykillingus.Andifyoucan'tdothat,IreallybelievethattheIDSAshouldbeabolished,asshouldmost,ifnotall,statemedicalsocieties,untiltheyarewillingtogobacktoscienceandpatients'bestinterests.Thoughthispostwillprobablybedeleted,atleastIhavegottenabriefchancewtospeakmypeace.Dotherightthing!RobinGunnIwouldliketheIDSAtosetasideegos,politics,conflictsofinterestanddotherightthing.Throwoutthe2006Lymeguidelines.GetanewpanelofdoctorsdoctorsthattreatLymediseaseandrewriteproper,ethicalguidelinesbasedonreality.Theneedless

sufferingcausedbytheignoranceofinfectiousdiseasedoctorsisunbelievable.StephanieKodakyaPhillipsitsabouttimeyougetrealaboutLyme.LisaHiltonWhataboutmorestudiesonhowitistransmittedsincealmostnooneevenremembersatick.Whataboutsexualtransmission?Bloodtransfusions?childbirthwhichwealreadyknowbutdrsdontseemto?Otherinsects?ElaineFacteauWalkerHowcouldsomeonepossibly

thinkthattheseinfectionscanbeeasytotreat?I'msureyouunderstanditbutyouneedtoACKNOWLEDGEthefactthatthisissuehasgottenverymessedupanditishurtingthousandsofpeople.Standupandmakesomechangesforthediagnosisandtreatmentoftickbornediseases.Beabletolookatyourselvesinthemirror.StephanieVandagriffIcontactedcnnandsentalinktothis.Everybody,sendalinktoothernewsstations!Weneedtogetstationstocoverthis!LisaHiltonto AnnMarieO'Shaughnessy,youcouldincludethisinyourprojecttoAndersonCooper.GailShefferPleasereworkthelatestguidelinesandquitcherrypickingthemedicalliteraturethatbacksupyouroldoutdatedguidelines.IamnotheretobashIDSA,butmanohdays,yourguidelinesareNOTWORKING!