Idsa Comments Part 1

What would you like to see from your society in the coming year?
 ·  · Share ·  11 hours ago  ·

  • 45 shares
    • Todd Meese How about a cure for Lyme disease? Actually let’s start with some honesty about the disease

      11 hours ago  ·  ·  37
    • Joanne Drayson An honest review of the Lyme Disease Guidelines looking at the science presented at the IOM workshop and acknowledgeing that all is not known about this emerging complex disease with it’s many co infections.

      11 hours ago  ·  ·  33
    • Laurie Damsell Fahey The Five Thousand or so of us on Facebook with Chronic Lyme Disease to have treatment options.

      11 hours ago  ·  ·  31
    • Jaisibel Sullivan Some honesty and understanding about Lyme would be at the top of that list, thanks.

      11 hours ago  ·  ·  30
    • Marcella Rosenberg Less proliferation of drug resistant microorganisms.

      11 hours ago  ·  ·  7
    • Jacqi Euler Honesty about Lyme Disease and less restrictions on the doctors who treat patients with Chronic Lyme!

      10 hours ago  ·  ·  26
    • Madison Lewis Change in your stance against the existence and treatment of Chronic/Latent Lyme. Far too many people have died and are suffering severely as a result of the misinformation you’ve put out. Correct yourselves before you lose all respect from the Medical Community. The film/dvd ‘Eyes Wide Open’, opened many eyes to your links to insurance companies.. Be about True Medical Fact. This is Medicine… This is not about money and politics.

      10 hours ago  ·  ·  28
    • Lori Sullivan-Mangrum Better guidelines for treatment of late stage Lyme Disease. More Lyme Literate Doctors. Doctors to have free reign to treat Lyme according to their patients, no one person has the same DNA therefore how can we all respond the same to treatment?

      10 hours ago  ·  ·  25
    • Lisa Calista Botto More lyme disease awareness. It took three years to be free of my lyme disease. This insanity needs to be addressed.

      10 hours ago  ·  ·  20
    • John Coughlin Explain to us why we are so sick and you can’t tell us anything but make up labels and say there is no cure.. How about all those that are slipping through the cracks because of your guidelines. Docs are afraid to over diagnose Lyme so they do the exact opposite and send people home still sick! We need change too many suffering now to ignore anymore…

      10 hours ago  ·  ·  28
    • Kim Tarbox There is a tremendous need for IDSA to retract the degradation of an ill people and admit that your due diligence is incomplete regarding Lyme. Reevaluate the oath prior to administration of MD licensing.

      10 hours ago  ·  ·  20
    • Kim Tarbox Preferrably before I die?

      10 hours ago  ·  ·  16
    • Gina Lickliter I’d like to see a reevaluation of your stance on Chronic Lyme disease….sick patients shouldn’t be treated with the suspicion, resistance, and ridicule I faced when seeking treatment with one of your physicians. I think it’s time for some real open-minded discussion of this topic, given the rise of tick-borne cases that HAVE been documented…How many have slipped through the cracks?

      10 hours ago  ·  ·  25
    • Cristopher Yulish I would like to see all of the doctors who drafted the 2006 Lyme Guidelines exiled from the Society and barred from Medicine for conflicts of interest. They have put private and business interests ahead of the public interest. This is unforgivable.

      Redeem yourself and start fresh by helping the thousands who are suffering with a disease they can get no recognition for due to the damage from a small tyrannical group of “experts.”

      Train doctors to help those who are sick, educate the public with accurate information and develop some real testing methods so no one else has to suffer again.

      10 hours ago  ·  ·  36
    • Jill V. Easton Admitting that tick-borne and insect-borne diseases are in all 50 states, that it is not just an East Coast disease. I was bitten in San Diego, California, by a tick in a residential area while standing on cement and contracted Lyme, Babesia Duncani, Ehrlichia, Anaplasma, Bartonella. My elderly father was bitten four years later by a mosquito in San Diego and got Lyme and Bartonella. I would like the IDSA to return to me my life savings of $400,000 that I have used to pay out-of-pocket medical expenses, 9 years of suffering from disseminated diseases, my successful advertising career, my athletic prowess, my health, my hope to get married, my looks, my ability to do the simple things in life that others take for granted – all because the head of Infectious Diseases at one of the largest medical centers in San Diego refused to believe that Lyme Disease exists in San Diego, even though I had seen the ticks, had an EM rash, had a CDC-positive Western Blot, was already responding to the few antibiotics I could get from another doctor, and in fact, he had seen a Lyme patient three weeks before me and dismissed her with as much ignorance and arrogance as he dismissed me. 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 do gardening, ever walk anywhere, sit under a tree or are simply in the wrong place at the wrong time, each of your doctors and their family members are at risk to go through what we go through due to your guidelines.

      10 hours ago  ·  ·  39
    • Madison Lewis ditto on the ‘Exhile from the Society and barred from Medicine’ re: the drs who drafted the 2006 Lyme Guidelines!!

      10 hours ago  ·  ·  20
    • Bambi Albert to be given options and the right to choose how we want to be treated for CHRONIC lyme disease

      9 hours ago  ·  ·  26
    • Christy Hudson To get a diagnosis for Lyme Disease before 6yrs, a close encounter with death and $50k+ later.

      9 hours ago  ·  ·  20
    • Bambi Albert We have told you enough times IDSA what we want, why don’t you stop asking and do something???

      9 hours ago  ·  ·  25
    • Benedetta Di Lyme More research and support for diagnosing and treating Lyme disease and other related tick infections.

      9 hours ago  ·  ·  20
    • Diane Lyme Ballou Admit the truth about Chronic Lyme Disease and allow doctors and patients to make educated decisions on how they should be treated for this devastating disease.

      9 hours ago  ·  ·  28
    • Jennifer Lauren Bailey Robins acknowledgement of chronic lyme, fulfillment of the hippocratic oath, and substantial and reasonable treatment to those suffering from chronic lyme and its co-infections.

      9 hours ago  ·  ·  23
    • Naomi Rachamim An honest evaluation of the science and evidence of chronic lyme. A look at what we as patients have been suffering for years. Cristopher, I like your comment about a new board with members who do not have conflict of interest.

      9 hours ago  ·  ·  25
    • Amber Gipe For some understanding and support of Chronic Lyme Disease and for us who actually suffer from lyme disease to no longer go bankrupt in hopes of getting better!!! we need awareness and better treatments!! dont ask what society wants unless your FINALLY ready to listen and make a change!!! and p.s. let lyme doctors treat the way they feel is necessary, if we are willing to put our lives in their hands then why try so hard to stop us/them!

      9 hours ago  ·  ·  25
    • Mallori Margaret educate the public! i was sick with lyme disease & co-infections for 22 years before knowing what was wrong with me. i’m 26 now & i’m barely able to work. my quality of life is a fraction of what it should be & i’m considered more functional than most who have late stage lyme disease. because doctors are ignorant, i turned to holistic medicine & it’s saved my life! i have a long way to go but i can’t help but think how much easier this would’ve been if education was available.. to me, my doctors, my family.

      9 hours ago  ·  ·  20
    • Ellen V. What I would like see in 2O12 is for the acknowledgement that Lyme Disease actually exists outside the boundries that you have set for a proper diagnosis, so that more doctors can become more informed and we can feel free to go to whatever doctor we chose and feel confident that we are getting proper treatment and those doctors can feel safe from legal prosecution for treating us…

      9 hours ago  · 
    • Jill Justiss I would like to see appropriate treatment for those with chronic lyme disease and a stop to the persecution of lyme doctors who dare to treat these patients with long term antibiotics.

      9 hours ago  ·  ·  27
    • Peter von Tiesenhausen To no longer marginalize those afflicted by Lyme disease and related Vector Bourne Infectious Diseases. Please throw out your existing guidelines pertaining to this now and have some that will actually help people. Those people I’m making reference to, desperately need your support.

      9 hours ago  ·  ·  26
    • Nicole Newell it would be great to see you acknowledge that chronic lymes exists and let drs know it is ok to diagnose and treat ppl who have it….i cannot even get a diagnosis for it even tho i have tested positive for it 3 times i am told instead that i have everything else. instead of being treated i am pushed away with no treatment at all….how many years am i and others expected to suffer with this disease while you turn your back and do nothing to help.

      9 hours ago  ·  ·  19
    • Karie Thulon Klim Please do not delay in reforming the policy on treatment for Chronic Lyme Disease. Be sure to include all of the new and growing body of scientific research.

      9 hours ago  ·  ·  23
    • Tom Morton Wholeheartedly agree with Mr Yulish’s comments about Lyme.

      8 hours ago  ·  ·  17
    • Tom Morton Speaking as a physician it is striking and sad to realize how much this issue is squelched by media outlets…..

      8 hours ago  ·  ·  22
    • Karie Thulon Klim I waited for 23 years to have this scourge of an illness recognized. It’s time to pay attention to the suffering, revise the guidelines, and to progressively integrate research as new information becomes available.

      8 hours ago  ·  ·  22
    • Jennifer Middleton I suffered for 18 years before being dx’d in May. I lost the most productive years of my life. I am only 7 months into treatment and still so very sick. It is time to admit your mistakes and become a place for healing and restoration of all of us who suffer. This is the least you should do.

      8 hours ago  ·  ·  17
    • Mitch Gordon Stop pretending that your guidelines are based on science and knowledgeable medical treatment. Your guidelines document is full of ignorance and deliberate lies designed to pander to the insurance and drug industries. Why is Dr. Charles Ray Jones still fighting in the courts to save his career? Why can’t Dr. Eva Sapi’s and the University of New Haven’s lyme research get published in a major medical journal like JAMA? Why are a month’s worth of oral antibiotics still being pushed as the standard of care for a complex of diseases that such a treatment regimen doesn’t even touch? Admit your dishonesty, start over, and START LISTENING.

      8 hours ago  ·  ·  20
    • Joey MacGregor I completely agree with all being suggested here, especially the comments of Cristopher Yulish. The denial has to stop. What you are doing to all of us who are ill and the doctors that are trying to help us is criminal. We should not have to fight for treatment.

      8 hours ago  ·  ·  15
    • 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 to help thousands of those suffer from Lyme disease & all those other invisible diseases that everybody doesn’t seem to care about, a wish that I may someday be able to if not work then at least wakeup in the morning & have a day that I can even clean my home without wondering if I will be hospitalized, a dream that doesn’t turn into a nightmare & be able to take a walk even just to check my mail without the possibility of fainting & then going unconscious for hours, and of course the reality that I may become a satistic & have it take me dying & an autopsy to finally discover what I had. I’ve had Lyme since the late summer or early fall ofm1969 when i was only 6 yrs. old from a tick bite, the tick was imbedded in my head for days before my mom actually realized it was a tick & not a scab from a bum on my head. Plus having multiple positive tests including the Elisa & western blot. A then maybe someday it doesn’t take over 40 yrs. to get a Lyme disease diagnose. This was only a little over 2 yrs. ag. I’ve been very sick since the beginning of 1991 when all of my hopes & dreams were stolen from me. I even tried to continue my education & work until the end of 2001. I’m only 48 yrs. old & deserve a life as does the thousands that are begging for you help. Each year many Lyme suffers die & some of them don’t even know they have this disease so all we ask is to be recognized & counted.

      7 hours ago  ·  ·  19
    • Mitch Gordon ‎…and my comments are based on being married to a lyme sufferer of 8 or 10 years running…whose life has been saved and gradually improved by a lyme literate naturopathic doctor, while everyone at our HMO who has supposedly tried to address her lyme and babesia based on your garbage lyme guidelines has been ineffective, ignorant and dismissive.

      7 hours ago  ·  ·  20
    • Ann Goldman Please retract the existing 2006 Lyme Disease guidelines which are seriously flawed. Now that Cornell University has proven that chronic Lyme disease exists please stop misinforming the public and Primary Care Physicians about vector born illnesses.

      7 hours ago  ·  ·  23
    • Eva Eklund It is time you start work. It could be any of you next. Any of your loved ones. And then you sure would like the knowledge of any ILADS doctor. Families infect eachother, mom to child, sexually and who knows more. Borrelia and its CO-infections is worldwide. And you the IDSA is responsible for the guidelines in many countries. Being the big UNITED STATES OF AMERICA. Show it!!!

      7 hours ago  ·  ·  18
    • Madison Lewis If you don’t change your non-medically based Guidelines, and your attacks on the few Lyme specialists, like Dr. Jones, more babies will be born with lyme. And without Dr’s like Dr. Jones, who specializes in treating infants and children with lyme, these children won’t grow-up healthy… they will grow chronic.. or die.

      7 hours ago  ·  ·  19
    • Eva Eklund Oh and what about all the people not know they are infected…giving blood…there is more than ticks that infect us. Not only do we need longer treatments and individual treatments. We need the help to get the information out. Prevention is the key and im sure you have heard it before. If youre not going to put better guidelines out there for the many already infected. Open your eyes !!! And the people at risk !!!

      7 hours ago  ·  ·  14
    • Jo Brendle Yates To recognize that CHRONIC Lyme disease exists. And that it is indeed becoming an epidemic. My husband is being treated in Alabama, altho Lyme doesn’t exist here….right?!?!? If he had gotten the proper treatment when his tick bite occurred, he wouldn’t be in the battle for his life againt this vicious disease. What will it take to open the eyes of those in the IDSA to see how terrible this disease is?? Probably one of your own children/grandchildren, your spouse, etc……to come down with this “unexplainable” disease. One of your own to have to see countless Drs. that tell them there is nothing wrong with them, that they are crazy, that they just want attention. Is money, politics, and power more important than a person’s life. Take a stand and “do what is right” !!

      7 hours ago  ·  ·  17
    • Yvonne Forey Try saving lives instead of ignoring dying or chronically ill people WORLD WIDE.. UK follow YOUR corrupt guidelines too but wont accept USA blood test…somethings drastically wrong on all levels…I didnt know I had lyme, like many mothers and passed it on to my children and them to their children…In the word of my doctor ” oh yes lyme disease is a killer” then turned his back on me due to YOUR guidelines…These doctors are scared and turn people away…IF or should we say WHEN it happens to one you loved or yourself, then would you listen..probably not because you have the power and would get treated as BUSH did. Were begging you from all over the world to wake up! its beyond pandemic….allow dr’s to treat without threat…just do whats in your power before its too late, already too late for many who have died of lyme…you have blood on your hands.. HELP US

      7 hours ago  ·  ·  14
    • Debi Griffiths Of course I would like a cure but what I would really like is acknowledgement that chronic lyme disease “exists” and really needs treatment for longer than 30 days when it has been undiagnosed for many years and has caused damage to many body systems. Once that happens, I’d like to then be able to have practitioners who can deal with the lyme, the toxins and the regular treatment needed jusat to keep us stable. I would love to have back my executive management career – not to mention the $1+ million dollrsa in salary I have lost when I couldn’t work, all of the money I have spent on treatments, my athletic play time with my family, the ability to drive my car, carry on a conversation without losing the words, sleep and not feel like a prisoner in my own home. I want that for everyone who has suffered with this for, in my case 20+ years before weird health problems were finally diagnosed. I don’t even care anymore if this was a bio warefare thing – all I want is acknowledgement of the disease past 30 days, treatment, supportive therapies to help us get back to work and on with our lives. We don’t like being this sick!

      6 hours ago  ·  ·  18
    • Dana Johnson have a heart

      6 hours ago  ·  ·  14
    • Kathy Obal Carlstrom I would like to see a government oversight committee put in charge to thoroughly review the dangerously misleading misinformation put out by the IDSA regarding Lyme Disease and co-infections and the curious reasons behind it, because it has become a national crisis. What is it? Conflict of interest (money)? Medical peer pressure to conform? Pride? Surely it’s not ignorance anymore. People and children are literally dying and suffering and your group continues to put out to the international pubic some the most inaccurate medical information I ever seen. If you can’t participate in the field of medicine honestly or use basic common sense in your guidelines, then surely it’s time for those who can’t to step down from their positions on the IDSA board. I do not say any of these words lightly. Change is needed. The reasons why this is happening need to be addressed now. Are there any honest people on your board? I am beginning to question this. I think a dismantling of your group is needed with fresh new people put in charge who have no conflicts of interest. This would help save lives around the world.

      6 hours ago  ·  ·  17
    • Lisa Hilton I would like for them to recognize that many people are suffering from “invisible” illnesses and being ignore because they chose to ignore it. I would like for someone unbiased to start researching with an open mind and find the links and causes of all these diseases and see why we aren’t getting better.

      6 hours ago  ·  ·  11
    • Leslie Boswell Farrell For them to actually put science before profit.

      6 hours ago  ·  ·  16
    • Tim Hart Tell the Truth about treating Lyme ! Long term Antibotics WORK !

      6 hours ago  ·  ·  16
    • Tracy Schittler Re-write the guidelines for Lyme Disease…stop pretending this is something that is just going to go away. We are real people..with a real disease who should be able to get real care by Doctors who dont have to be afraid to treat us the way that we need to be treated, for the amount of time we need treatment. I would also like to see some new faces on the IDSA board, ones that are willing to stand up for Lyme Disease and the people affected !! How many more have to die…shame on you!!!

      6 hours ago  ·  ·  17
    • Debbie Thompson First, do no more harm.

      6 hours ago  ·  ·  16
    • Cheryl’s Lyme Page I would like to see more compassion and LESS arrogance from the members. Maybe offer classes on how to speak to patients? Use more adult terms than “vague symptoms” or “compelling stories” when we are asking you for more answers and REAL help to get better.

      I spoke to an IDSA member in Bethesda MD who’s only answer to me for what I could do because I’m still sick was “do you believe in God?” I said “well, yes.” He said “Then maybe you should pray more” he further told me he agreed there is flaws in the guidelines but he isn’t going to go against it as long as he’s a member of the IDSA.

      When a doctor who is a member of your dinner club states such things it’s a real sign that some need to be yanked off their High Horse and get busy being a doctor.

      6 hours ago  ·  ·  16
    • Leonora Arnaut How about putting some people in place that will and can actually make a difference in regards to the continual denial and flawed testing and messed up guidelines that the IDSA stands so firmly behind when it comes to lyme disease! This should NOT be about profit! How many more have to die before the IDSA admits that they’ve been wrong? Our medical doctors know there is a huge problem here, but are afraid of the IDSA, so their hands are tied. Your guidelines are cruel and criminal.

      6 hours ago  ·  ·  15
    • Gary Glaser You should do a voluntary investigation of your board using an experienced independent group that will verify that each board member is capable of participate in decision making without being influenced. Since IDSA does not report to any other organization or is responsible to document activities of the board if you wont do so the IDSA is not to be trusted and is then useless.

      6 hours ago  ·  ·  19
    • Liza Cammeron Toss out those painful, dated, fraudulant group of guidlines you have for Lyme patients. And stop persecuting their Drs. I don’t know which around me is growing faster, more chronic lyme sufferers, or horrifically mis-informed Doctors who remain so by believing the 2006 guidelines IDSA put out. A task force needs to dismantle the criminal group of Drs who set these guidelines, in order to line their pockets, and put out the science-based Guidelines Lyme Drs and Lyme Patients need.

      6 hours ago  ·  ·  19
    • Angelica Johansson Change your stance in the question of Lyme disease

      5 hours ago  ·  ·  14
    • Lori Ditzler Hagarman Admit that Lyme Disease is an epidemic and find a cure!

      5 hours ago  ·  ·  19
    • Cathy Zichichi Balsamo Work on treating Lyme disease! OK Maybe not even treat BUT Acknowledge! EDUCATE yourselves! Review guidelines and revisit!

      5 hours ago  ·  ·  19
    • Tony Ly Confess to the truths about Lyme Disease and start helping people so the blood on your hands will cease… Either way, there will be justice one day… God sees all things.

      5 hours ago  ·  ·  21
    • Gabbi Hicks Open your eyes & start supporting Lyme disease victims

      5 hours ago  ·  ·  16
    • Melissa Koshen IDSA DON’T YOU CARE? LYME DISEASE IS EVERYWHERE!! Start being part of the solution and stop being part of the problem.

      5 hours ago  ·  ·  14
    • Dawnja McCormack Realize Lyme Disease is real and everywhere and help get doctors to recognize and treat it CORRECTLY!!!

      5 hours ago  ·  ·  11
    • Liese Jarboe open your eyes to chronic lyme as an infection and not a post infection syndrome. hello, if the Bb is still in the body the body is still INFECTED!!! you don’t need 6 bands to be sick, only needed to report the CDC. Get your heads out of your asses and out of politics and managed care and treat people like human beings who need real medical treatment. i had a positive blood test and an IDSA provider told me i didn’t have lyme and that there is no lyme in NC. after treatment by another doctor, i am better. you are liars and thieves!

      5 hours ago  ·  ·  12
    • Kat Strickland I am ten years in and proof that Chronic Lyme exists. I want to see the guidelines changed to match the standard of care we derserve and have a right to in the USA. This is still a free country and we should still have the right to select the protocol treatment options with our doctor and for how long it takes to reach a functional life style.

      5 hours ago  ·  ·  15
    • Gary Schittler Jr How bout new guidelines and better testing for lyme disease !!!

      5 hours ago  ·  ·  11
    • Susan Lalor Help Lyme Disease Victims.

      5 hours ago  ·  ·  9
    • Kat Strickland In addition, I also will like for all of the doctors who drafted the 2006 Lyme Guidelines exiled from the Society and barred from Medicine for conflicts of interest. They have put private and business interests ahead of the public interest. This is outrageous and should no longer be ignored. Lyme is not going to go away. It will only increase each year. This is a plaque.

      5 hours ago  ·  ·  14
    • Kristi L. Servies Do something real and serious about Lyme!

      5 hours ago  ·  ·  8
    • Robin Sklar Fisher I would love to see drs. who believe in compassion and believing their patients when they describe symptoms instead of dismissing them. Too many people suffer from the same symptoms for it to be in the head of so many. Explain why so many of these patients improve and even get well when they obtain quality care from a llmd. Instead of attacking llmd’s because their opinions differ from yours question what they are seeing and why treatments they prescribe often provide relief while you just leave patients to deteriorate. I grew up in a family with doctors and was always raised to believe they wanted to help end suffering so I question why are you allowing the untold suffering of millions? Make your New Years Resolution to be fair and honest and review your stance. Listen to the millions pleading for help!

      5 hours ago  ·  ·  15
    • Claire St James I’d like to see you acknowledge chronic Lyme – both its prevalence and its severity. Work WITH ILADS and other health care professionals to find solutions for this disease. If you train phycians to catch the acute cases, you’ll have far fewer chronic cases to deal with in the future. Thank you!

      4 hours ago  ·  ·  16
    • Anne Howard Acknowledge Chronic/Late stage Lyme Disease. Please explain -If it does not exist, why are we (those of us with this illness) not allowed to donate bone marrow or blood? 37+ years with Lyme disease

      4 hours ago  ·  ·  17
    • Eliza Nokomis ‎1. Keep your politics and your money out of my healthcare 2. stop harassing mine and my children’s doctors-they saved our lives, not you 3. acknowledge the need for more research into lyme and co-infections being treated in a way that helps patients not have to rely on anecdotal evidence (which works better than your guidelines since we’re not waiting for you to put money into reliable research before we die) 4. encourage doctors to learn the clinical diagnosis criterion- not some CDC “reporting criterion” in order to identify sick patients. 5. educate doctors that there are more strains of lyme and only 1 strain has a test (therefore it is not all in our heads) 6. train doctors and hospitals to test for co-infections which require different medications (again, so once our “lyme” is “cured” we don’t have to lay in bed wondering why we’re still sick) 7. educate patients that this disease is sexually transmittable and able to be passed to children in utero 8. make resources available to speech and language providers, OT/PT, psych providers and schools so that our children stand a chance of making it thru one single damn day…that should be a good START for you guys. Don’t know how you people sleep at night after all the harm you have caused so many sick people. Shame on you.

      4 hours ago  ·  ·  18
    • Laurie Damsell Fahey All of us have the same symptoms of the Non existant disease.. in the chat rooms in the support groups.. all desperate for help.. My salavary glands are so swollen that I have been told that I probably have cancer by three seperate doctors! NO LYME!! Oh well that doesn’t exist we will call it something else??? I went to a hospital and got treated for an UnKNOWN Environmental Infection the poor doctor was afraid to call it for what it is?? How does that makes sense? Because The IDSA can’t call it anything the hospital turned me away and perhaps I will die??? Like many others but what does it say on their death certificate? not Lyme?

      4 hours ago  ·  ·  16
    • Jeannine Comtois Bennett Please acknowledge that Chronic Lyme exists. A change in the guidelines is necessary, as is educating Doctors about recognizing lyme before it has a chance to be chronic. Too many people in the medical profession believe the drivel that was put into the guidelines. Long term antibiotics do work. I went for years and years from one Dr. to the next, one specialist to the next, until I finally found a lyme literate MD who has been able to help me heal. It has been a long, hard road and I am not through yet. Use the Western Blot and get rid of the titer as the main test.

      4 hours ago  ·  ·  14
    • Nicole B. i think it is clear that lyme policy needs to be reexamined and independent research needs to be conducted. appropriate treatment for lyme disease and co-infections is desperately needed by the hundreds of thousands suffering from this disease!!!!

      4 hours ago  ·  ·  13
    • Lori Ditzler Hagarman Chronic Lyme exists! I have had it for at least 15 years and counting.

      4 hours ago  ·  ·  13
    • Ken Barton ‎’change the guidelines regarding lyme’?

      4 hours ago  ·  ·  8
    • Ken Barton more people with HIV working in the Field! It seems that organizations have gotten away from this over the past 5 years or so!

      4 hours ago  ·  ·  6
    • Susan Hoover I have had Lyme Disease for 29 years; diagnosed just one year ago. I was told I could not have it because we don’t have Lyme in Ohio. Really? Well, we do now. How do I “like” all the previous comments? I wish for all doctors to have to take an extended course on Lyme to get up to speed with it so they can recognize it and begin treating for it. I am a nurse and I hear patients say “I hurt all over.” I immediately think “LYME!” but never, ever have I seen a patient be diagnosed with Lyme. It is a sad situation.

      4 hours ago  ·  ·  16
    • Ken Barton How about, More Drs with HIV on decision making boards, and…..lyme.? This is not all about lyme. We need to be proactive where there are failings in both of these infectious diseases.

      4 hours ago  ·  ·  9
    • Kimberly Anderson Elliott For IDSA members to not have severe conflicts of interest including relationships with Managed Care and Big Pharma (vaccine patents) clouding their judgement. No single organization or any Physician should make money off denying treatment to patients! “To do no harm” Remember that pledge?!?!

      3 hours ago  ·  ·  11
    • Christina Gingerich I have had Lyme for 20+ years and diagnosed 2/2011. Folks don’t understand why I’m worse now than better.. how do you explain it when they don’t believe you are sick? I would like to see Drs. educated and learn to listen to their patients rather than just doing the “usual” treatment. Why are they so closeminded to this? Yes, it is a very sad situation.

      3 hours ago  ·  ·  9
    • Laurie Damsell Fahey My friend is CDC Positive lives in and was born and raised in ARIZONA yes ARIZONA the state that has the most cases of Erlichia in Dogs.. but the IDSA doctor told her its not possible there is no Lyme in Arizona.. so she tested her for HIV and then turned away. Even my Neurologist said most IDSA doctors are afraid to treat Lyme Patients and wont. The poor girl has been sick for years and has had thirteen operations.. for the same symptoms we all have.

      3 hours ago  ·  ·  8
    • Lauren Hentschel Lamoreaux Learn the truth about Lyme Disease and its coinfections. It can and does go chronic when untreated. And there IS hope for those of us who have it. But until YOU get it right, we have to fight tooth and nail to be treated, while being “treated” like outcasts and nut-jobs by the traditional medical community. Get the facts from people who haven’t been paid off by other parties, learn what “late stage” or “chronic” Lyme sufferers go through, and CHANGE THE GUIDELINES. People are suffering needlessly here.

      3 hours ago  ·  ·  13
    • Elizabeth Grimm I’d like to see our society acknowledge chronic Lyme – both its prevalence and its severity. I would like for our society to acknowledge that disease and ticks don’t stick to state boundaries and that every state is potentially infected with Lyme disease ticks. Work WITH ILADS and other health care professionals to find solutions for this disease. If you train phycians to catch the acute cases, you’ll have far fewer chronic cases to deal with in the future. Also, please watch Under Our Skin, the documentary and consider the information it has. Thank you for allowing us to be involved!

      3 hours ago  ·  ·  12
    • Kim Tarbox There will come a day where you can no longer make syndromes and blame psychosomatic reasonings for lost lives. There are hundreds of thousands of walking dead…once high functioning highly educated persons ..with destructive and false labels on their charts. The continued unwillingness to address this will eventually lead to the demise of your integrity. Your current compromise will cost far more than any future monetary or scientific gain. Please …respectfully…don’t just listen ..but hear a people in great threat of our literal lives. Tell us…what will it take to aquire your commitment?

      3 hours ago  ·  ·  10
    • David Reinhardt Why is it that fewer than half a dozen doctors in the entire state of MI will treat Lyme and that it is almost impossible to find them? If the first four or so I went to had even considered I might have had Lyme ( with history of a tic bite and bulls eye rash ) 9 yrs ago, maybe I wouldn’t be infected now! Are all those doctors afraid, for some reason, to get involved with Lime disease and it’s politics?

      3 hours ago  ·  ·  8
    • Whitney Johnston Woodburn I am in agreement with everyone that late stage/chronic Lyme disease needs to be recognized. Do you realize how much patients have to spend just to be able to walk each day? We are moms, dads, husbands, wives, children etc. that are trying to contribute to society and make the world a better place but due to the lack of attention you choose to pay to Lyme disease there are many people unable to live out their dreams and use their talents. More than that people are dying because of misdiagnosis or late diagnosis. There are so many stories out there. Maybe if you took an interest in the people you are “serving” we would support you more. Why can’t we work cooperatively together? What is it hurting the IDSA to acknowledge we exist?

      3 hours ago  ·  ·  11
    • Madison Lewis ‎@ Whitney: The answer to your last question.. $$$$$$$$

      3 hours ago  ·  ·  8
    • Debbie Bates Qualls LYME disease is REAL in every state. NOW is the time to step up and take action. No need for prolonging suffering of thousands of people who all fight for their lives everyday, trying to educate themselves and others, when many of them have very little energy for anything. So many similiar stories, it is hard to believe that in todays society, there is such difficulty in making headway to get in help at all, (recognition, testing, support, research, treatment, etc)

      3 hours ago  ·  ·  13
    • Courtney Bailey ‎1. quit perpetuating the myth that “Lyme disease doesn’t exist” in certain states. It is everywhere! 2. Quit telling all of us that chronic Lyme disease doesn’t exist and that long term antibiotic treatment isn’t effective or safe. It can be both if done properly. W/o that treatment I would be dead 3. Quit letting the few Lyme literate Dr’s we can find be hunted down by state boards for treating us simply bc they refuse to fall in line w/ your flawed treatment guidelines! At least be honest enough to admit that your “society” doesn’t know enough abt Lyme/ chronic Lyme/ co-infections to put out a set of rules (u call guidelines) to be applied across all situations. Can’t we even admit that we just don’t know enough abt this disease and it’s various forms to establish a strict set of guidelines? 4. Use all of ur profits from ur board members’ patents on Lyme test/ test kits towards independent research for lyme 5. For God’s sake at least educate all students in med school that Lyme can be sexually transmitted and the signs of acute infection. We can agree that acute infection exists can’t we? And that co infections exist. Here in Ohio the Dr’s barely know what acute Lyme is let alone the signs of chronic infection or the various co infections! That is criminal. 6. Stop teaching Dr’s that all lyme cases present with a rash! That is myth that must be dispelled! 7. Work with independent researchers to come up with better diagnostic tools! To do this your board must not include members who are making ANY profit on any part of the Lyme diagnosis including tests, kits, and meds or vaccines for the treatment and prevention of Lyme. 8. At the very least please use your funds to educate the ENTIRE country abt Lyme its symptoms and transmission! This is not just a coastal disease! Lastly, I will say that it makes me sick (no pun intended) that so many of us are told that our illness is in our heads. We are sick dammit! And we need effective clinical diagnosis and treatment. We are entitled to dignity and respect. Until you can admit that you have made mistakes and that there is so much we need to learn abt Lyme before we should publish guidelines (which are used like dictates directly from god), there will be hundreds of thousands of misdiagnosed, under-treated and truly ill people will continue to suffer. We refuse to be silenced! #OccupyIDSA

      3 hours ago  ·  ·  18
    • Susan McInnis Acknowledgement that chronic lyme is a disease that is causing tremendous pain to hundreds of thousands of people worldwide. Acknowledgement that your guidelines for treating lyme disease are flawed, out of date, and punishing the sickest. Acknowledgement that those guidelines need change and the guts to actually follow through and fix them.

      3 hours ago  ·  ·  15
    • Chris Powell come to the table for discussion with an open mind. include ILADS docs in equal proportion to IDSA Panel members. between the 2 groups perhaps patients CAN be helped and the epidemic can be slowed by PROPER testing, PROPER diagnosis AND PROPER treatment….LONG term works for a lot of people including my daughter. the health risk of doing nothing = death so we choose to treat and happily sign any release necessary to get the job done!!!

      2 hours ago  ·  ·  10
    • Debbie Smith Let the expert doctors treat us as we need to be and help with the laws so that insurance has to pay. I’ve heard too many stories of people’s struggles with insurance, existence of lyme, diagnosis of lyme, etc. If “western blot” was listed as a standard test and with a reliable lab then maybe people would get diagnosed sooner and not have to go to so many doctors, labs, MRIs, etc. In the long run it would also save insurance companies money if we didn’t have to go through so much to get the answer. Thanks.

      2 hours ago  ·  ·  6
    • Ashley Ordecki I would like to see your guidelines changed about lyme. This time with no conflicts of interest. Why not use lyme literate doctors this time that are actually improving patients? It is such a shame that they are getting their licenses suspended and taken away when they are the only ones that help us. Stop hiding the truth. Someday you will have to admit it once there are too many of us to ignore. It shouldn’t have to come to that. Please help stop all of the suffering. Make this a truthful year! Chronic lyme exists! I know because I have it. I have had lyme for 2 years before being diagnosed. 21 days of antibiotics didn’t cure me and neither did waiting it out.

      2 hours ago  ·  ·  12
    • Alan Burdge STOP LIEING ABOUT LYME DISEASE
      AND TICK BORNE ILLNESSES!
      PEOPLE ARE DIEING AND YOU DO NOTHING BUT CATER TO THE $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
      SPECIAL INTEREST !!!!!!!

      2 hours ago  ·  ·  2
    • Alan Burdge http://www.youtube.com/watch?v=JpPFKp3FXmQ&feature=player_embedded

      www.youtube.com

      Lyme Disease is the most rapidly spreading disease, faster than HIV/Aids TB and Cancer
      2 hours ago  ·  ·  2
    • Alan Burdge WATCH THE TRUTH ABOVE!!!!!!!!!!!!!!!

      2 hours ago  ·  ·  1
    • Gary Barrett I’d like to see you take responsibility for the multiple thousands of people who have suffered because of your narrow minded view of chronic Lyme Disease. Many people have suffered due to your unreasonable, outdated and unscientific guidelines. More people commit suicide from this disease than dying from the disease itself. Why is this? It’s because everywhere they go looking for medical help they can get it because of your asinine guidelines. They can’t stand the pain and suffering anymore. They can’t stand be mocked and not taken seriously when they go to doctors for help or end up in the ER with strange symptoms and horrible pain all over their body. When are you going to spend more time and money searching for a cure for this evil disease rather than going after good doctors who are trying to help us and alleviate the pain we suffer from this disease? Your policies have caused harm to millions of lyme sufferers everywhere because your organization denies the seriousness of this disease. Why is it that in almost every state when someone goes to an infectious disease doctor they say, “we don’t have lyme disease in our state”? How can you say this to people? Get on the lyme forums and read about people who have suffered with this disease for years and years with no relief. Your doctors say, “well, if they still suffer after taking antibiotics for a few months then they have something else wrong with them”. Really? How can that be when so many people never get better? Your organization has blood on it’s hands. You should be ashamed of the way you have treated those of us who have suffered with this disease. Quit playing politics with this disease and get your head out of where the sun don’t shine and look at the facts, not your outdated guidelines. People are dying suffering and dying from this disease, and what are you doing about it? Helping people get better, no! You’re going after good doctors and hunting them down and trying to get their licenses taken away from them. Enough of this! You are not going to get away with this much longer because we the people who suffer with this disease are FED UP! We are NOT going to tolerate this any longer. Either take us seriously and help us get better or shut down your doors. You serve no purpose to those of us who suffer everyday with this disease. None whatsoever. I would not wish this horrible disease upon you or your family members, yet, you let me and my family suffer with this daily. I can’t get treatment for it, so I have to fend for myself and self treat because almost every doctor in my state doesn’t believe we even have lyme disease, and none of the infectious disease doctors believe in chronic lyme. So where do we go to get help? There’s no where for us to go! That’s why so many of us are desperate and take matters into our own hands and try to treat ourselves any way that we can. We are sick and tired of being sick. We’re sick and tired of being ignored and marginalized. It’s time for you to wake up and take us seriously and start realizing that this tick borne disease is an epidemic that needs to be addressed and serious money needs to be spent investigating a cure for it. If you can’t do this, then please, do us all a favor, close your doors and don’t do any more harm to us. You’ve harmed millions of us, it’s time you stop harming us and start helping us!

      2 hours ago  ·  ·  22
    • Ariel Marquet Please acknowledge that Lyme disease is a complex disorder usually complicated with multiple tick-borne infections.

      2 hours ago  ·  ·  8
    • Debbie Smith I’d like to add another comment…I hear about people being diagnosed with MS, Fibromyalgia, Chronic Pain Syndrome, Lupus, Arthritis, etc….some of these same people have also found out that Lyme Disease is the reason they have these ailments. Doctors thought I had MS….if I had continued on steroids instead of finally being diagnosed correctly with Lyme I probably would NOT be here typing this comment. Please help…this is America afterall.

      2 hours ago  ·  ·  13
    • Alan Burdge http://www.actionlyme.org/ALSLYME47.htm

      www.actionlyme.org

      Make a TLR2 agonist bot so we can do away with ticks-and-fungal- immune suppres…See More
      2 hours ago  ·  ·  3
    • Stephanie Michelle Kealy MY society? Obviously this society has 0 interest in me, a Lyme patient, who has seen over 30 doctors and spent thousands of dollars over the past 5 years to finally receive the correct diagnosis and treatment. In August 2011, I began what is most likely going to be a multi-year (and thousands of dollars more) journey to recovery.

      2 hours ago  ·  ·  11
    • Alan Burdge IDSA LYME DOCTORS
      ARE 2nd RATE AT BEST!!!!!!!!
      more like 3rd rate.
      $$$$$$$$$$$$$$$$$$$$$$
      is all they care about.
      NOT YOUR HEALTH !!

      2 hours ago  ·  ·  6
    • Andrea Garner Buttram Spend the past three years in my shoes after my encounter with a tick here in GA where Lyme doesn’t exist. IDSA – you will not be remembered fondly. We know and we will never, ever forget.

      2 hours ago  ·  ·  6
    • Kelly Tolman Curtis Wow… so many people with Lyme Disease….I have fibro and as far as I know, have never been tested for Lyme….Do they have similar symptoms….

      2 hours ago  ·  ·  6
    • Kelly Tolman Curtis Also, what I would like to see is more research on fibromyalgia, and whether or not it can be traced to bacteria or viruses…I worked as an RN for 22 years, and was exposed to all manner of infectious dieases; and I know a lot of nurses who also have Fibromyalgia….

      2 hours ago  ·  ·  2
    • Lyme Frenz Stop turning a blind eye. This will be EPIDEMIC.

      2 hours ago  ·  ·  7
    • Andrea Garner Buttram Do you see the little boy in my profile pic? He’s 4 years old- for the past 3 years he’s had to settle for a part time mom because there are many days when Lyme and all it’s side effects win.

      2 hours ago  ·  ·  6
    • Ruth James ‎@Kelly Tolman Curtis : Kelly. I’ve been sick for almost eleven years now, disabled for five. My initial diagnosis was ME/CFS and Fibro.

      Guess what I have? LYME DISEASE.

      Too bad no one would TEST me for it despite my asking for years!

      Think all that society has LOST by losing US!

      2 hours ago  ·  ·  5
    • Kaethe Mitchell I have two children with late-stage Lyme, bartonella and babesiosis. They were never treated because we never saw an EM rash or tick. They are now, after years of illness and specialists saying they were making up their symptoms, on their way to health thanks to an amazing, non IDSA doctor. ELISAs were negative. Change your ways, IDSA!

      2 hours ago  ·  ·  6
    • Eva Eklund I wish i had the money to pay you more

      2 hours ago  ·  ·  3
    • Stephanie Michelle Kealy Kelly – i believe you most likely do have Lyme. look into it asap…watching the film “Under Our Skin” should be your first stop (it’s streaming on Netflix). then call your PCP and ask to be referred to a Lyme Literate MD.

      2 hours ago  ·  ·  7
    • Liza Cammeron An End to your corrupt Drs. You have killed people with lyme by what you’ve done and haven’t done. Change the board. Change the guidelines.

      2 hours ago  ·  ·  7
    • Lori Cotton Hobbs Families and lives are being destroyed because of ignorance about Lyme disease. If everyone at IDSA had an immediate family member with this horrid disease, the political issues would disappear. Resolve to do what you know is right regarding Lyme. Lyme is in NC!!!! My tick bite was two years before I woke up one day and couldn’t walk. I have four kids to take care of and I’ve battled this for the past year and I’m still not well. I have to pay for most of my treatment out of pocket. Do the RIGHT thing and help people.

      2 hours ago  ·  ·  9
    • Ashley Ordecki Kelly, they do have similar symptoms. I was told by one dr that if my tests came back negative that it was fibromyalgia. I also had the point test done. I don’t think that dr was testing for lyme at that time either. I went to a different dr and got tests with her and came back positive for lyme. I also know someone who had fibro for many years. She has it under control now. But, I could relate with everything! In the beginning I had mostly muscle pains and fatigue and as time went on the pain spread and symptoms kept pilling on.

      2 hours ago  ·  ·  5
    • Yvonne Forey Do we really think they will read our comments, we hope so but something says this post will be deleted like they delete lyme patients…we need to copy them all and keep them…WE are our only voice we have, only WE that have suffered endless years of pain and suffering, bankruptcy, loss of lives, jobs, friends and family who dont get it…WE need to make sure we heard…something is telling me this post no matter how profound wont even get looked at, let alone taken notice of…I as well as the thousands of others hope it does and there is a change..but somehow after years of trying everything , dont think so.. lets all copy these posts and send them to who ever we think will listen..whoever that maybe.. our local news, papers etc….I pray with all my heart that we all get what we rightfully deserve, validation!

      2 hours ago  ·  ·  7
    • Alyssa Ryvers Adopting the www.ilads.org guidelines.

      2 hours ago  ·  ·  6
    • Kathleen O’Connell I agree with the above posts regarding the IDSA’s denial that Chronic Lyme is killing people, ruining lives, and tearing families apart. PLEASE !!

      2 hours ago  ·  ·  4
    • Amanda Blaker Lyme disease awareness in CA state parks!!!!!!!!!!!!

      2 hours ago  ·  ·  7
    • Kelly Lehman ACKNOWLEDGE CHRONIC LYME and do something helpful about it instead of turning your backs on us and questioning are illness. we are all fighting hard. we will not be silenced. i have become debilitated over the past 15 years from being born, YES BORN, with lyme. worse yet i have had to watch my mother deteriorate from this disease and all that comes with it. CHANGE NEEDS TO HAPPEN NOW. innocent people are suffering and dying and you, the IDSA, are doing nothing. you should be ashamed.

      2 hours ago  ·  ·  6
    • Jill Hess I would love to see an accurate lyme disease test, and more research on treatment.

      2 hours ago  ·  ·  8
    • Pam Haisty More research on Lyme disease.

      2 hours ago  ·  ·  7
    • Sue Bush I have CDC Lyme positive labs. I get sick a lot. I live in SE AZ where “We don’t have Lyme”, despite the fact that I hail from N WI which is an endemic area.
      I am forced to self-treat. I am highly educated on the topic, more so than ANY MD I have ever MET. I cannot get treatment or medications.
      What I would like to see is for MD’s to educate themselves and stop reading Pharma literature, and start reading sites on the Internet, they should be better at this than me.
      BTW, I REFUSE TO PAY any MD that treats me like an idiot, or puts their staff or their patients or even themselves at risk do to their self-imposed ignorance. They can bill Medicare all they want, but not a dime comes off my dinner table to pay for nothing, to be treated disrespectfully, no help or even compassion.

      2 hours ago  ·  ·  5
    • Becky Lee To get educated about Lyme Disease, this includes the CDC & IDSA too. I never got the rash, I did however grow up covered in ticks.

      2 hours ago  ·  ·  7
    • Cheri Stine Published and intense interviews of all doctors registered w ILADS; admission of a lack of education and proper training in the medical schools (I saw at least 13 specialists over 15 yrs who got it all wrong – nearly killed me w meds to suppress immune system); coordination w researchers in other countries; regular surveys by Lyme patients; checks and balances; restraint on medical boards by allowing clinical diagnosis and doctor judgment on treatment; the recommendation that Lyme victims be allowed to take responsibility for their treatment; a recommendation to insurance companies to trust doctors when treating Lyme victims. I have more, but this is enough for now. Lyme has been a nightmare for my family and me, and it is in Texas too!

      2 hours ago  ·  ·  7
    • Sue Bush do=due

      2 hours ago  ·  ·  2
    • Lindsey Duval Change your guidelines to reflect SCIENCE. STOP going after doctors who are doing their jobs and stop having the ones who care have to go into hiding to effectively treat people who are suffering. Allow treatments for chronic Lyme, secondary infections, and post-Lyme syndromes/autoimmune disorders to be covered by medical insurance. Better educate the doctors who are ignorant about Lyme. Stop limiting treatment options for Lyme. Push for better diagnostic testing (IgeneX), not the silly little Western blot that is prone to false negatives.

      2 hours ago  ·  ·  9
    • Nina Moore Tell the truth about Lyme and that Chronic Lyme exists. I have the same story as all others suffering from Lyme, being ill for over 15 years, told I had CFS by an Infectious Disease physician, got worse and finally got the correct diagnoses of Lyme, Babesia and Bartonella. Lost my 27 year teaching career to this disease. BUT once I got the correct diagnoses and started treatment I am now getting my life back. People are suffering and dying because of incorrect IDSA guidelines and uneducated physicians. The time is now to uncover and share the truth about Lyme Disease.

      2 hours ago  ·  ·  14
    • Susan Hoover Interesting comment, Kim Tarbox, about being the walking dead. Years and years before I even knew what Lyme was, I called myself a walking dead person. I used to say that I was working on having a nervous breakdown. I was so tired I would fantasize about someone taking care of me. And no one understood me.

      2 hours ago  ·  ·  8
    • Heather Shirkey Acknowledgement that Lyme is a chronic illness … which includes what everyone else has already mentioned regarding health care, insurance, choice of Dr, etc…

      2 hours ago  ·  ·  8
    • Laurie Damsell Fahey I started with a fibro diagnosis, dhronic fatigue, tremors night sweats lost my ability to talk face went paralyzed as the years went on took 8 years to get so severe I fell headfirst down the stairs..

      about an hour ago  ·  ·  3
    • Puma Of-Thenorth Adopting honest Lyme disease guidelines. Due to your present guidelines it took me years and years to get correctly diagnosed for Lyme disease and co-infections which caused me a huge loss of income, I wasted lots of money on uninformed MDs while looking for answers while suffering from horrific crippling neuro symptoms. Lyme disease is not hard to get and easy to treat nor does two to three weeks of abx always cure it. Diseased ticks are in every state of the USA. The public and all the MDs in the USA need to be told the truth about this disease that is an epidemic and can be persistent. Vaccinations can cause harm & be toxic as well. What I want from the IDSA in 2012 is more honesty integrity and more compassion. My life would be different & much better if you had correct Lyme disease guidelines. Instead I was given unreliable testing due to your guidelines and told I did not have the disease when I did.

      about an hour ago  ·  ·  9
    • Cam Altee Brown ‎1) Education of all IDSA physicians of symptoms of Lyme starting in medical school.
      2) Help stop the myth that Lyme is only in certain states. (I know a cardiologist who in fact is positive he acquired Lyme in North Florida.)

      about an hour ago  ·  ·  7
    • Alyson Case Please reevaluate your stance on Chronic Lyme disease. No disease should EVER be controversial, and the fact that chronic Lyme disease IS should highlight the great urgency for more research.

      about an hour ago  ·  ·  10
    • Jan Reber Hammett After being diagnosed with a myriad of ‘floater’ conditions [fibromyalgia, arthritis, carpal tunnel, cysts, etc.] in the 2+ years since a definite diagnosis of Lyme Disease, it sure would be grand to see a serious concerted focus on the long-term damage of tick-born bacteria transmission, the illnesses they cause and appropriate treatment by the conventional medicine community.

      about an hour ago  ·  ·  7
    • Lauren Clyde I’d also like to see society acknowledge chronic Lyme. It is true that ticks in every state is infected with Lyme disease ticks. PLEASE Work with ILADS to find treatments for this disease.The guidleines must be changed so that insurance co’s will cover the treatment of this disease as well. Not one more man, woman or child should be made to suffer because they can not afford to treat this terrible disease. The documentary Under Our Skin, told the truth about lyme disease and this should be acknowledged. Thank you !

      about an hour ago  ·  ·  9
    • Anne’s Lyme Haus Change the diagnostic and treatment guidelines for Lyme Disease. Immediate focus of energy and funds for Lyme Disease research. My children are suffering horribly and the IDSA’s refusal to back down is prolonging their suffering.

      about an hour ago  ·  ·  2
    • Ginny Passetto Many have stated this much better but bottom line is, the IDSA needs to get intensely involved with the issue of chronic lyme and its many debilitating coinfections. How can you keep denying this disease when so many have been documented with it? BLOOD TESTS TELL THE TRUTH! I have a family member who has been sick with lyme for 9 years now and has been more than once been tested and the bands show….lyme and its coinfections, despite treatments received over the years. WHAT ARE YOU AFRAID OF? Doctors have been stripped of their medical licenses for trying to help people. Isn’t that what medicine is supposed to be about?NOT worrying about the political controversies with insurance companies. To continue to deny there are so many with this disease, reeks of a conspiracy. You would do best to align yourselves with ILADS and other such organizations dedicated to helping people to health not helping them to their demise or debilitations!!

      about an hour ago  ·  ·  5
    • Christina Gallo Lyons What I’d like from my society in 2013 is for the borrelia culture test to be validated by several independent labs. Once that occurs there will be no more lying IDSA. Are you ready?? It’s coming, IDSA it’s coming. And what fun it will be to watch all of your doctors scrambling. Better hire a few more attorneys and PR people this year.

      about an hour ago  ·  ·  7
    • Laura Griffis Reynolds My 5 year old son has Lyme disease from the state of TN – where “there is no Lyme disease” – come live at my house for a week, see how he feels and what we go thru with the medicine, diet… And see if you should change your guidelines – pitiful and Shame on you!!

      about an hour ago  ·  ·  9
    • Melissa Antal I don’t know where to begin. My husband and I and our two children were diagnosed last year. I have had Chronic Lyme Disease for at least 27 years. I went from doctor to doctor to doctor and was never even tested for Lyme. I have every symptom and when I was finally tested, I was CDC positive. If I had known before I had children, I may have been able to spare them from this debilitating disease. Now, we have to fight for treatment and we have to fight for respect and we have to fight doctors – who should know more than WE do about this disease – to convince them that there even is a such thing as Chronic OR Congenital Lyme. How about taking our side for once? We are sick and tired and could use the support of an organization that should be dedicated to helping people like us! People are dying from this disease and thousands and thousands of people are walking around with it and have no idea! Help us…PLEASE!

      about an hour ago  ·  ·  10
    • Jennifer Justiss You need to educate doctors regarding lyme disease. We need research and we need doctors. Chronic lyme disease is a fact. It is an epidemic. I want to know what you are going to do about it.

      about an hour ago  ·  ·  11
    • Yvonne Leist-creswell definitely time for IDSA to acknowledge the truth about Lyme disease and it’s co-infections. Yes I was depressed as I was told I was by a IDSA member who refused to evaluate my symptoms, basing her diagnosis solely on ELISA results. Fortunately I’ve since found a LLMD to treat the symptoms I had when I was seen by the IDSA member. Get with the truth…there are countless of numbers of us out here suffering, some dying because of your neglect!

      about an hour ago  ·  ·  8
    • Margaret McCormick Preto-Rodas My daughter, now 16, became sick just over 4 yrs ago – she was diagnosed with chronic migraines, fibromyalsia, depression and told it was all in her head. She had lyme testing done, but her pediatrician and neurologist couldn’t agree as to whether or not she was +…how can 2 drs read a test result so differently? These past 4 yrs have been hell for her. She has some bright spots, but few and far between. In May of 2011 she woke up PARALYZED from the hips down. We took her to the ER where they were concerned until we told them she was being treated for Lyme disease. As soon as they heard that, they sent a psychiatrist to talk to her (and to us). After being sent home while she was STILL paralyzed (and with NO assistance) our pedi recommended Boston Children’s Hospital – they too were nice until they heard she was receiving IV antibiotics for Lyme – once they heard that, they too sent the psychiatrist to talk to her (and again to us). They told us she had conversion disorder – in other words she was subconsciously making her legs not work so she could avoid doing something she didn’t want to…..mind you, she is on homebound as her brain fog, concentration, body pain and fatigue are too much for her to attend school, she doesn’t participate in any extracurricular activities and rarely goes out. Just what was she trying to avoid? And how can any dr in their right mind send a paralyzed person home with no assistance? Thankfully we had a portable toilet, wheelchair, walker, etc left from when my mom was ill. We have little trust left in the medical community – and our daughter, has none left. She recently had horrible acid reflux – the pain from it was unbearable – she refused to go to the ER because she knows they will do little to nothing for her. My husband and I finally called 911….again, the EMT’s were very helpful until they heard she was being treated for Lyme. Once they heard that, they decided that she was having an anxiety attack and took their time getting us to the ER. Thankfully an ER dr listened to her symptoms – he ruled out a blood clot (due to her PICC line) and then tried treating her for acid reflux. The medical community and IDSA MUST WAKE UP and realize that Lyme is a SERIOUS, CHRONIC (for some, not all) illness! New treatment guidelines need to be established, funding for research made available. The lyme community is TIRED of being told they have other illnessess or being denied treatment! Chronic lyme is REAL – if you don’t believe me, feel free to come visit with my daughter. She will change your mind. WAKE UP IDSA and help all who suffer from this awful, tricky, chronic form of lyme.

      about an hour ago  ·  ·  10
    • Gina Magee Because of your self-interests and closed-minds, IDSA, you are blatantly ruining many people’s lives, and that includes caring doctors who try to treat people with Lyme. What are you afraid of that you treat people this way? There is no disgrace in updating your research, guidelines, etc… But there is disgrace in holding fast to outdated ways of thinking. And, not only that, you are perpetuating these fallacies about Lyme disease at the expense of many others. What happened to “first do no harm?” If you want to do anything, why don’t you update your guidelines, educate medical students and doctors, and stop going after good docs. You are not only keeping people sick, but you are creating lives for them that are becoming unbearable – physically, mentally, spiritually, financially – and the list goes on. It would be my wish that the members of the IDSA, especially the perpetuators of the Lyme guidelines, be held accountable and be made to pay damages to those affected by your actions (because they seem criminal to me). I wish I could understand your motives. Why are you making so many people suffer?

      about an hour ago  ·  ·  11
    • McRae Harriss Lyme disease truth/help!

      about an hour ago  ·  ·  11
    • Margaret McCormick Preto-Rodas One final comment – YOU, IDSA, hold the health and well being of my daughter and thousands of others in your hands – Do NOT fail them, pls!

      about an hour ago  ·  ·  9
    • Billiejo Miller Rush ADMIT Late stage/chronic Lyme disease needs to be recognized!! and your testing is an EPIC FAIL!!!

      about an hour ago  ·  ·  14
    • Liza Cammeron Under Our Skin Good Morning America National Coverage
      www.youtube.com
      National news coverage on ABC’s Good Morning America on award-winning Lyme Disease documentary. This film chronicles the controversy and debates surrounding …

      about an hour ago  ·  ·  12
    • Alan Robison An ID doctor gave me a Western Blot after I demanded that he include it in the battery of tests he offered. It was the only test that came back positive: To his dismay and disbelief, CDC positive! Even then, he refused to acknowledge the obvious because I didn’t present a rash or joint pain. After years of being told I needed psychiatric help, I thanked him and found a more progressive physician.

      about an hour ago  ·  ·  9
    • JC Hoskins for the ISDA to acknowledge that many people are getting sick from tick bites. People are sick and dying because the organizations designed to help patients are not. Educate.

      about an hour ago  ·  ·  9
    • Kd Lyme Honest, accurate and unbiased research of Lyme disease that’s not intended for the sole purpose of proving yourselves right. Charges of crimes against humanity for Wormser et al.would be nice as well.

      about an hour ago  ·  ·  10
    • Joni Boyd Please figure out the chronic or late stage Lyme is a REAL illness hurting REAL people–taking away their lives, money and robbing them of their health and faith in doctors. I am a nurse–and I have watched my cheerleader daughter go from an A/B student in highschool to having to withdraw from school–missing her prom, homecoming, friends, EVERYTHING!!!!! We are spending our life savings trying desparately to get her well!!! IDSA–GET A DOSE OF REALITY!!!!!

      about an hour ago  ·  ·  14
    • Thane Lyme I would like to see you come clean about your cover-up of Chronic Lyme Disease.

      about an hour ago  ·  ·  18
    • Tracy Hans Yes, I would cheer to the high heaven if the IDSA took an honest, clear look at how many folks are truly suffering from infectious tick borne illnesses and start to educate IDSA docs appropriately. An honest revision of the guidelines that looks at ALL reputable literature out there, would preserve the health of millions.

      about an hour ago  ·  ·  11
    • Thane Lyme I would like to see you at least have the courage to not delete this thread.

      about an hour ago  ·  ·  21
    • Cecelia Cece Price Jones Greater listening & backing of those members of society that are afflicted with lyme disease &/ or co-infections & the docs who treat them & bring them back to health!

      about an hour ago  via mobile ·  ·  7
    • J David Kocurek To recover public trust, the society must develop guidelines for and enforce intellectual honesty in all publications, communications and any other endeavors – or more simply, be true to the science.

      about an hour ago  ·  ·  7
    • Amy Topper Watkins Acknowledgement that chronic Lyme exists. There are so many people suffering and being treated like they are crazy because you refuse to acknowledge its existence. Think about something other than your pocketbooks. Look at the faces of the sick, my 8 year old son being one of them, and do something to help them.

      about an hour ago  ·  ·  8
    • William Jones Hopefully Ron Paul will do away with them if he is elected :)

      about an hour ago  ·  ·  5
    • Monica Zmuda I have had lyme disease for over 4 years, multiple treatments. Positive Blot and co-infections. Recognize lyme disease in the chronic form. I was a nurse for over 15 years, I now can not practice due to Lyme Disease. I think a HUGE lawsuit should be brought up against IDSA and the money be returned to all of us, plus more for the suffering!!! I pray your family never gets afflicted with LYME! Only then will you truly understand. Would you risk your life and test the theory? There are unlimited amounts of infected ticks in every state waiting for the opportunity!!!!

      about an hour ago  ·  ·  7
    • Jessica Gontarz-Durfee I want someone to acknowledge chronic lyme, for my nine year old son’s sake.

      about an hour ago  ·  ·  6
    • Josh Cutler I would love nothing more than to see a non biased review of the guidelines for lyme disease. I would also like to see proof and evidence based research again PROVING that Chronic Late stage lyme disease does not exist.

      Clearly so many people are suffering. Look at this!! Is this in THIS MANY PEOPLES HEADS? I don’t think so. Most of us have lost our careers,lives,homes,family and some have even lost lives. All because of what?

      We are not here to cause issues. We just want fair and just treatment. This will NOT stop till we have proper treatment and research for a cure.

      Show us PROOF PROOF PROOF from unbiased researchers that we are making this up. Are you really going to sweep thousands of people under the rug to die.

      What if this was someone in your family fighting for their life?

      about an hour ago  ·  ·  10
    • Vanessa Baker-Simon I would love to see more sensitive and accurate testing for co-infections carried by ticks.

      about an hour ago  ·  ·  6
    • Charlie Henry-Bladorn Please, please, please revisit Chronic Lyme. Too many are suffering and crying for help. We don’t want to be sick, we WANT to be better. With an early diagnosis the treatment is fairly basic and not cost prohibitive at all. Instead there is so much ignorance and denial that this has turned into an epidemic with uncounted frustrated sufferers.

      about an hour ago  ·  ·  10
    • Thane Lyme Lyme Disease has destroyed my life. It’s time you put the interests of the world’s society ahead of your own corrupted IDSA Society.

      about an hour ago  ·  ·  13
    • Angel Williams Spell haha……and it would be great to get a response after asking this question…c’mon tell us what u think about our responses

      about an hour ago  ·  ·  8
    • Shawn Watkins I would like to see an acknowledgement of Chronic Lyme Disease and the effectiveness of long term antibiotics in fighting it by your society.

      about an hour ago  ·  ·  6
    • Kristin Martin Do something about lyme. People are losing their lives and living in misery because of it and it’s completely unnecessary.

      about an hour ago  ·  ·  8
    • Josh Cutler Guys, based off previous threads/comments being deleted. I would suggest taking a screen shot for yourself so that we can share all of this in case it does get deleted.

      about an hour ago  ·  ·  8
    • Todd Meese ‎177+ comments in 10 hours. Are you “Drs” listening? WE AREN’T GOING AWAY! WE WILL NOT SIT QUIETLY.

      about an hour ago  ·  ·  15
    • Lisa Hilton I would like to see all these “invisible” illnesses taken serious. We have a country here of sick people and ignoring us is inhumane. We need research and we need it done by unbiased people who don’t already have their mind made up that we are all just crazy. Children are sick, people are dying, many of us are completely disabled at very young ages! It’s time to admit that there is an epidemic and put egos or past learned concepts aside and start healing people.

      about an hour ago  ·  ·  10
    • Jennifer Bays Toombs Stop damning people to a life of pain and disability. Start becoming a part of the Lyme disease solution, instead of the problem.

      about an hour ago  ·  ·  12
    • Lisa Hilton Also I think it’s time to get rid of tests that don’t work. If they are inaccurate then it should be a crime to use them. Many drs have no idea how inaccurate these lyme tests ALL are, and they tell you you dont have lyme based on them. The CDC even states that they are not to be used for diagnosis but thats what drs do, because you encourage it for insurance reasons. Not fair to patients. Start working for the patient again and not the insurance companies.

      about an hour ago  ·  ·  15
    • Tina Spock-Kopcik The hippocratic oath that you have taken should not be ignored. There are too many of us who are not “mentally” ill, but physically ill from a bacteria that you downplay and turn a blind eye. How many others have to suffer from this plague that is continually silenced?? I want the last 4 years of my life back, before this nightmare, when I was healthy and strong. Not now where I still face doctors who say, “it can’t be lyme and it is most certainly not MS.” Ok then, what is causing my brain lesions and problems with my nervous system. My MRI’s and blood tests tell the story for which you choose to ignore. Thanks IDSA for making a laughing stock out of those who have been unfortunate enough to have been bitten by a tick. By the way, tell your IDSA buddies to get there story straight when talking to patients. I know it’s really hard for you to fathom that a deer might stray from Massachusetts into Connecticut with an infected tick on it. How about starting from scratch and test for all lyme bands? I believe that would be a great place to start. If that is not sufficient, let’s get going on a better test. Our children deserve better than to be disabled by a bacteria such as Lyme.

      about an hour ago  ·  ·  9
    • Kevin S Thomas I was treaded by an Infectious disease specialist when I was 1st diagnosed with Lyme.. She stated that there is no such thing as Chronic Lyme and that since I had a months worth of IV antbiotics I was cured. I didn’t know any better.. Two months later I relapsed and am now sicker then I was in the 1st place! The Lyme treament guidelines need to be changed!

      about an hour ago  ·  ·  9
    • Andi Merna Mccormick Admit chronic Lyme exists and 4 weeks of antibiotics are NOT enough!

      about an hour ago  ·  ·  10
    • Sharon Mahaffey HOW ABOUT RECOGNIZING “LYME DISEASE” AS A DEBILITATING ILLNESS???? CHRONIC LYME DISEASE DOES EXIST!!!!! IT DOES NOT JUST GO AWAY AND “LYMIES” WILL NOT JUST GO AWAY EITHER. WALK IN OUR SHOES…LIVE OUR LIVES AND SEE THIS DISEASE FOR WHAT IT REALLY IS!!! YOUR POLICIES AND TREATMENTS OF LYME DISEASE NEED TO BE UPDATED.

      about an hour ago  · 
    • Courtney Lynn Lyme disease has ruined my life thus far at only 26 years of age. I went undiagnosed for years and suffered needlessly due to the improper testing and ignorance of so many doctors. I think you already know what it is that we all want. Its time you all step up to the plate and do the right thing. We need proper studies done for effective treatment of this disease.

      59 minutes ago  ·  ·  9
    • Sara Stegner Lehner the truth about lyme disease, chronic lyme, and co-infections. I really do not enjoy writing a check out to my health insurance company every month and not having a doctor in my “network” admit there is chronic lyme. Aside from living a lower quality of life, we’re going broke.

      59 minutes ago  ·  ·  5
    • Jeanne Bain I agree with Lisa Hilton. Take these invisible illnesses seriously. Lyme, Bartonella, PANDAS, etc. need to have money spent on research for all of them. Congenital infections need to be explored and not discounted. When my son was hospitalized for suspected Bartonella, the ID docs didn’t even bother to test him. Nor did they explore the idea that my son’s illness is congenital (which it is). They screwed him. SCREWED him by treating him for 24 hours and sending him home.

      57 minutes ago  ·  ·  9
    • Sharon Mahaffey IDSA DRS NEED TO CHANGE THEIR RECITATION OF “CHRONIC LYME DISEASE DOES NOT EXIST AND ONCE YOU ARE TREATED YOU ARE CURED”. VISIT ANY IDSA DR AND YOU WILL BE TOLD THIS ALMOST WORD FOR WORD!!!! IGNORANCE SOLVES NOTHING :(

      57 minutes ago  · 
    • Sublyme Contender WAY TO GO LYMIES……who said we didnt have a voice…….hey i dare u to ask us another question…i have truly gotten tickled…and loving it………..

      54 minutes ago  ·  ·  6
    • Cheryl Monahan

      I totally. Agree Monica. I too suffer &I lost my job as well after 11 yrs. &I still suffer. I thought I was dying of an unknown disease. I did test positive in 7/09 prescribed doxy for 4 wks. After 2 wks I awoke in such pain a knife st…See More
      52 minutes ago  ·  ·  1
    • Michelle De Libero Ordecki What I would like to see from you is for you to wake up and stop being so stupid about CHRONIC LYME DISEASE. Twenty one days of antibiotics is ridiculous. Get your act together.

      52 minutes ago  ·  ·  6
    • Sherri Elsworth

      You need more pediatric specialist doctors that our Lyme Literate. Better yet let the Lyme specialist do their job!! Let the family’s have insurance that can be used to pay Lyme specialist for treatment. Not having family’s have to move i…See More
      50 minutes ago  ·  ·  4
    • Jordana Pilmanis

      Please acknowledge the existence of chronic Lyme and the damage it is doing to people’s lives, the amazing suffering it is inflicting. Please have IMPARTIAL doctors review the science between both IDSA and ILADS standards of care – not just…See More
      49 minutes ago  ·  ·  6
    • Jennifer Schoonmaker

      I have an infection that is very difficult to treat and has taken over a year to find, first presented as Q-fever. I am not paranoid, am well educated and do not wish to be in a lyme war, I cannot begin to tell you how I have been treated b…See More
      49 minutes ago  ·  ·  6
    • Shannon Devine

      I would like to see doctors allowed to treat their patients without interference from those with different opinions. I would like to see common sense. Anyone with Lyme: please try Liquid Samento. Only thing that has worked for me and my te…See More
      49 minutes ago  ·  ·  4
    • Stefanie Manning

      Reconsider your guidelines for testing and treatment of Lyme Disease. I nearly lost my life based on your flawed positioning. 2 weeks of antibiotic, then relapse. 30 days…relapse. 14 hospitalizations, 3 ICU stays…doctors saw my Lyme…See More
      48 minutes ago  ·  ·  6
    • Jordana Pilmanis ‎** Sorry, I meant false NEGATIVES, not positives. The testing returns false NEGATIVES.

      48 minutes ago  ·  ·  3
    • Shannon Devine LLMDs and others risking their license and reputations and anything else to treat us, you are the heroes.

      47 minutes ago  ·  ·  3
    • Stephanie Spicer Please acknowledge the existence of chronic Lyme disease and make it less than impossible for us to get the medical help we need. Provide protection for doctors who help us. Change outdated laws. Admit error.

      43 minutes ago  ·  ·  5
    • Randi Beth Einzig

      I was just looking in the mirror today feeling like I was having a seizure! I said out loud I cant believe I havent killed myself-I have had an electucal headache for 5 years! I have had a headache for amost 2,000 days! I have been infect…See More
      43 minutes ago  ·  ·  7
    • Amber Hodge Aker Please recognize these illnesses so these patients can get the treatments they need and deserve. I have two friends who suffer from Lyme Disease and they travel across the US trying to find doctors who can and will treat them.

      41 minutes ago  ·  ·  9
    • Julie Howard

      Seems a bit absurd to see this question posed by IDSA and perhaps even more absurd that I would bother commenting…but sitting idly by wouldn’t be right, either, so…IDSA, thank you for asking. Please acknowledge the suffering of people …See More
      41 minutes ago  ·  ·  5
    • Tish Healy I’d like to see you admit the TRUTH about chronic and recurring lyme disease. Why don’t you try working with the lyme literate physicians to help people instead of denying that so many are sick. We’ve lost jobs, homes, marriages, relationships from this nasty disease. Don’t tell us it doesn’t exist. We live it every day!!!

      41 minutes ago  ·  ·  8
    • Kelly Mairson To stop denying that chronic Lyme exists & look for a cure to help the millions of people suffering with this. Include ILADS guidelines in your recommendations & suggest doctors go through the ILADS training program so they can properly treat their patients.

      41 minutes ago  ·  ·  6
    • Debi Collins Please diagnose and treat me and my family exactly like you would diagnose and treat a member of your own family.

      40 minutes ago  ·  ·  8
    • Stephanie Spicer We are too many for you to push this thing under the carpet anymore.

      40 minutes ago  ·  ·  8
    • Deb Labarbera

      Chronic Lyme Disease DOES exist whether you want to admit it or not. I am living and dying proof. How can you be so closed minded NOT to educate yourselves further to help those who need to be diagnosed and treated properly? Children are…See More
      38 minutes ago  ·  ·  6
    • Karie Thulon Klim For years on end I was reassured my symptoms were “nothing.” If now we know nothing means Lyme, then nothing is something and “nothing” truly could be included on the medical diagnostic decision tree. Nothing now has new meaning of chronic and late- stage significance. Everyone needs to know what nothing really means and get proper respect, attention, and treatment for it.

      36 minutes ago  ·  ·  4
    • Tish Healy A response would also be welcomed!

      36 minutes ago  ·  ·  6
    • Tish Healy Hey, I’m curious. When is “World Lyme Day”??

      34 minutes ago  ·  ·  5
    • Sublyme Contender haha tish thats what im screaming…..a response would be nice

      34 minutes ago  ·  ·  4
    • Stephanie Vandagriff To redue the guidlines on Lyme Disease! Stop being closed minded and self serving and help our Lyme community!

      32 minutes ago  ·  ·  5
    • Sublyme Contender they could start by saying they were sorry for being more intrested in money than the people the swore to protect…and then they could “get on the common sense wagon” with the rest of us….its not that hard…..its kinda hard to believe that we r the crazy ones…i dont know how they sleep at night…i would be ashamed of myself

      32 minutes ago  ·  ·  5
    • Linda Erickson I am appalled at the level of misery, physical, emotional, and spiritual,that some doctors will say “it’ all in your head”. Where is your compassion. My fervent wish is that all doctors would listen to and trust their patients, and would become educated about chronic Lyme. Open your minds and your hearts, PLEASE!!!

      31 minutes ago  ·  ·  4
    • Sublyme Contender and it sounds to me they have been infected since they cant retain any new knowledge….*current research*

      31 minutes ago  ·  ·  4
    • Benjamin Mahoney I am a 28 year old male who has lost everything and lives on disability because of your “guidelines” on Lyme Disease. I would like to see YOUR society admit the truth about Lyme Disease.

      30 minutes ago  ·  ·  10
    • Alyssa Knapp

      The IDSA must revisit its Lyme disease guidelines. Chronic Lyme / Persistent Lyme / Late Stage Lyme…whatever you choose to call it is very real and it exists. It is time to start treating people who are very ill with a very real disease. …See More
      27 minutes ago  ·  ·  9
    • Lysandra Cook I would like you to revisit your stand on Lyme disease. My life was changed for the better when my doctor followed the ILADS guidelines rather than yours. It took me 5 years and countless doctors to go from being nearly disabled and on many medications to living my life again.

      24 minutes ago  ·  ·  6
    • Wendy Vogt IDSA should stand for more than I Don’t See Anything. You are currently responsible for an unchecked epidemic in the US… do the right thing and start being what your name stands for – be the experts on a disease that is growing faster than AIDS. Start now.

      23 minutes ago  ·  ·  7
    • Sublyme Contender does anyone got this saved in case they delete it?

      22 minutes ago  ·  ·  2
    • Kim DeSantis Goodwin

      Our lives are being taken from us this illness is a living nightmare. 10 drs and told Ms, fribro, depression, pain management and the list goes on. Gave it to my daughter during pregnancy. I was symptom free for two years no bulls eye rash…See More
      21 minutes ago  ·  ·  5
    • Lucretia Perilli

      Please admit that members of your nonprofit organization falsified information about accurate testing for Lyme disease in order to falsify the Lyme vaccine trials outcome (which was a complete fiasco). This happened yrs ago, causing a massi…See More
      19 minutes ago  ·  ·  2
    • Hallie Richwine ‎@sublyme contender – screenshots of all comments until mine right this second.

      18 minutes ago  ·  ·  3
    • Laura DeCoste just PLEASE…please help us.

      17 minutes ago  ·  ·  4
    • Cathy Tutty I would love to see IDSA really examine autoimmune and tick-borne disease connections. I would love even more if you would look for some protocols and endorse some treatment for those suffering from these insidious diseases!

      14 minutes ago  · 
    • Stephanie Vandagriff Good job Hallie!

      12 minutes ago  · 
    • Stephanie Vandagriff We should send this link to all news stations to gain national attention.

      11 minutes ago  ·  ·  2
    • Chris Kasper I would like for the idsa to stop trying to sweep lyme disease under the carpet. There is too much suffering.

      9 minutes ago  ·  ·  1
    • Lisa Hilton I would also like to see someone study the connections between alll these new mysterious illnesses that are popping up. Is there any studies being done to see what causes fibro, chronic fatigue, ms, parkinsons, alzheimers, lupus? Since none of these have a causative factor, could the connections be borrelia?

      9 minutes ago  ·  ·  1
    • Cory Boyd My sister’s been sick with Lyme disease for over a year, and it’s ruining her life and hurting my family. I would love to see actual recognition of chronic Lyme disease and an actual treatment.

      6 minutes ago  ·  ·  1
    • Debbie Ray You all need to drop your stance on Lyme Disease and all the silly politics involved. I have suffered for 10 years and my Infectious Disease doctor won’t treat me with IV antibiotics. I continue to be sick and no one seems to care that I can’t take care of myself or my son all because of this horrible disease you say doesn’t exist!!! SHAME ON THE IDSA!!!!!

      6 minutes ago  · 
    • Lisa Hilton ‎”All truths are easy to understand once they are discovered; the point is to discover them.” ~Galileo

      6 minutes ago  · 
    • Ashley Ordecki Yeah, Sublyme. I screen shot it all!

      5 minutes ago  ·  ·  1
    • Madison Lewis ‎@ Tish: 2 women posted ‘Lyme Month’ on this site. The post was deleted, and the 2 women were no longer able to comment on this page. Does this not speak a world of volumes about the lack of integrity and the degrees this ‘Society of Drs’ will go to in order to squalsh the very existence or advocating the existance of Chronic Lyme or any opposition to their lucrative ‘Guidelines’.

      4 minutes ago  ·  ·  1
    • Donna Harris Pruitt

      Lyme disease is no longer about science or sick people. It is about money, power and greed. Yours, big pharmas, insurance comanies. I want to see you live up to the Hippocratic Oath you all took when you became doctors, and stop worrying about lining your pockets. Acknowledge Lyme Disease in all of its fforms, instead of ignoring the science that is in front of your eyes, and if you are unwilling to treat us, let the few doctors who are willing to treat us, to do their jobs na d stop persecuting them, and ultimately killing us. And if you can’t do that, I really believe that the IDSA should be abolished, as should most, if not all, state medical societies, until they are willing to go back to science and patients’ best interests. Though this post will probably be deleted, at least I have gotten a brief chancew to speak my peace. Do the right thing!
      3 minutes ago  ·  ·  1




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