Additional follow-up letter to the Chair of the Tick Borne Disease Working Group. Anyone wishing to contact the Lyme Disease Working Group can send an email to: tickbornedisease@hhs.gov ---------- Original Message ---------- From: Carl Tuttle To: jaucott2@jhmi.edu, olx1@cdc.gov, tickbornedisease@hhs.gov, kbechto1@jhmi.edu Cc: mark.dayton@state.mn.us, daniel.tillson@mail.house.gov, kvf1@comcast.net, iturko@umd.edu, allen.l.richards.civ@mail.mil, richard.wolitski@hhs.gov, scott.cooper@cms.hhs.gov, khoney@stanford.edu, ddutko@hanszenlaporte.com, kalachakra108@aol.com, chris.smith@mail.house.gov, adam.durand@mail.house.gov, marisa.kovacs@mail.house.gov, info@smith4nj.com, matt.hadro@mail.house.gov, tamir.elnabarawy@mail.house.gov, ddiallo@sisterlove.org, collin.peterson@mail.house.gov, cbb0@cdc.gov, estella.jones@fda.hhs.gov, dennis.dixon1@nih.hhs.gov, smithr@mmc.org, mary.noonan@mail.house.gov, james.berger@hhs.gov, vanila.singh@hhs.gov, lise.nigrovic@childrens.harvard.edu, sdonta@comcast.net, wendyadams1@gmail.com, ptourad1@jhmi.edu, don.wright@hhs.gov Date: July 17, 2018 at 8:02 AM Subject: Re: Cognitive Decline in Post-treatment Lyme Disease Syndrome Dr Aucott, Below I have listed nine randomly selected comments from disabled Lyme patients across America. These comments were collected from the petition calling for a congressional investigation into the mishandling of Lyme disease. I have THOUSANDS of these comments describing an illness that is destroying lives, ending careers, causing death and disability while leaving victims in financial ruin. You can download the comment file here: https://www.dropbox.com/s/qwuo4yss38ov1f3/petition_comments_June%2018%202018.pdf?dl=0 We need to understand how Lyme disease disables its victim so we can treat these individuals! If you are having a difficult time recruiting patients like this for meaningful studies, I’m sure I can find all that you need. It would certainly appear that you have excluded this class of patient. As you read the comments below I ask the question; does this sound like just some “mild cognitive decline”? Comments: 1. My 16 year old daughter has late stage, neurological Lyme Disease. I have watch over the past several years as she has had to give up so much. She has stopped playing sports (basketball, soccer, and softball), dancing, eating many different foods, going to school, and even just spending time with friends. We have been to many different doctors with many different specialties looking for answers and have finally received a clinical diagnosis of Lyme Disease from two doctors who are working together to try to help her. The challenge now is to get her strong enough to endure the treatment that she is facing. We are told it may take years of treatment to get her to a reasonable quality of life. It is devastating to see my daughter struggle with all of this at a time when her friends are enjoy things like prom, graduations, and even just youth group activities while she sits at home suffering. This is a terrible disease! Catherine Weakley, Virginia Beach, VA 2. My best friend's life has been devastated by Lyme Disease for the last several years. If only her doctors had taken her concerns and symptoms seriously in the beginning and administered the proper tests, she may not have gone through so many years of pain. I accompanied her to these appointments and watched first hand as her symptoms were ignored and mis diagnosed over and over again. She has gone through years of suffering that could have been prevented had she been diagnosed at the start and given antibiotics. For the sake of her and the many others who are suffering needlessly I urge you to investigate this matter fully and support education, awareness, acceptance and action throughout the medical community. Samantha Erin Barragar, Malibu, CA 3. I have been suffering from Neurological Lyme Disease since I was 15 years old. A year and a half ago, I had a serious flare up that has left me disabled with seizures, tremors, cognitive issues, immobility, and chronic pain. The severity of this disease should not be overlooked, and warrants significant research. The outdated and immoral IDSA guidelines must be investigated for the sake of all current and future persons infected with Lyme. Our voices deserve to be heard! caren dandeo, Middletown, NJ 4. I'm positive for lyme and co infections and was getting better with treatment, then insurance stopped paying. I'm wheelchair bound now and cannot stand, move, or take care of myself. United HealthCare cited the CDC guidelines of 28 days of antibiotics of treatment. THAT'S NOT ENOUGH. Doug Frenz, Hudson, OH 5. I'm only 20 years old and I've suffered from Lyme Disease for the past 6 years of my life. For the first few years of my disease I went undiagnosed; doctors would tell me I was crazy, and I continued to get sicker and sicker. My 15 year old sister is also really sick with Lyme and has been for years. It breaks my heart. There has to be something serious done about this epidemic, and fast. Niki Mitchell, Binghamton, NY, NY 6. My 4 Lyme tests came back "negative" according to my PCP's. I was "negative" for 8 years while I did indeed have Lyme. When I visited 2 LLMD's they both verified that I had Lyme. Had it been caught 8 years prior it could have been cured. Instead, it spread to all parts of my body and brain. I in turn became a burden on the healthcare system and lost all of my assets. Accurate testing MUST be developed! Serenaty S, New York, NY 7. I am disabled, in a wheelchair, and currently on IV medicine to try and kill off Lyme, Babesia, and Bartonella. I am in huge debt because insurance refuses to pay for anything - not doctor visits, not medicine, nothing. Too many are sick and dying. Enough. wendy vogt, Redwood City, CA 8. My husband has been diagnosed with neurological lyme and the coinfections of bartonella and babesia. We spent years going form doctor to doctor trying to find out what he has. His illness reached the point where he is no longer able to work. Our insurance company will not approve the IV antibiotics he needs to get better due to the current CDC guidelines. The illness does not just affect the patient but the entire family. Lyme needs to be addressed. Kathy Wilder Bichler, Fair Lawn, NJ 9. Spent over $100,000 dollars to get our son well in Oklahoma. 21 doctors would not recognize Lyme disease because of ignorance. We went out of state to find a LLMD. It is an awful disease and in so many ways. His Lyme test only had one band positive so according to the CDC is not proof of Lyme. Well wrong...he was pulled 5 ticks off himself and 3 days later severally I'll for the next 2 1/2 years of being homebound. We where lucky we had a savings but I took our retirement money. Diana Clock, Bixby, OK PRIORITY # 1 MOVE LYME DISEASE TO HIGHEST ALERT AS IT SHOULD HAVE BEEN THIRTY YEARS AGO! Carl Tuttle Lyme Endemic Hudson, NH Cc: Daniel R. Dutko, HANSZEN LAPORTE