People who died of Lyme disease Carole M. C. Alton, Angela Amato, Grace Amond, Harold G. Anderson, James Andrew “Andy” Anderson, Edward Stanley Arnold, Deiby Ashkenazy, June L. Anderson Atkins (Alzheimer’s & Lyme), Lothar Bachmann, Julian B. Backus, Sue Baiata (suicide), Jerry Balistreri, Peter Anthony Banducci (ALS & Lyme), Gregory Lee Bankert, Patricia Jones Bauman, Moonface Bear (Leukemia & Lyme), Lonnie Benedict (ALS & Lyme), Eric Bengtson (suicide), Larry Bennett, Kurt Hilding Billing (suicide), Jonathan Bleefield, John Bleiweiss (LLMD and Lyme patient, LLMD-persecution related suicide), Deborah Jean Bodden (suicide), William “Billy” Boesché (ALS & Lyme), Bryan Bower, Judith Ross Boynton (ALS & Lyme), Charlie Bradley, Martha J. “Marty” Bradley, Scott Brazil (ALS & Lyme), Lauren Brooks, Anne Brown, Harry Burke, Pamela Truscott Byrne, Terry Cain (ALS & Lyme), Jerry Carrington (suicide), Watt Carter, Kathleen Cavert, Phil Chapman (ALS & Lyme), Carrie Chase, Bill Chinnock (suicide), Theresa Jean Wells Clay, Nicole Coats, Elizabeth A. Bowley Coen (suicide), Michael Coers (ALS & Lyme), David Cole, Jane Colfax, Luther Conant (ALS & Lyme), Patricia Elaine Jamison Cooley, Kimberly Ann “Kym” Nagle Cooper, Rachel Coxon, Vickie Crawford (ALS & Lyme), Alasdair Crockett (suicide), Katherine Alderson Crowe (ALS & Lyme), Michael Cunningham (ALS & Lyme), Jon Williams Davis, Carole A. Van Doorn (ALS & Lyme), John Drulle, James “Jimmy” Duarte, Martin Frank Dumke, Jeannette Eichelberger, Martin Eisenhardt, Kathleen Gambon Erdei, John A. Every, Herbert “Bart” Fenolio (initially diagnosed with ALS, then Lyme), Frank John Ferrigno, Ronald S. Ferris (suicide), Rick Fincham, Paul Fjare, Linda K. Jones Flory, Jamie Forschner, Shirley Forsman, Geri Robin Teitelbaum Fosseen, Joan Maura Friedenberg, Linda M. Fuller, Brittany Margarete Gallgher, Freida R. Gaultney, William D. Geiser, Julia Gilbert (possible suicide), Doris M. Grade, Gordon P. Grafton Jr., Michael Keith “Mike” Gregory (ALS & Lyme), Bryan Grimes Jr., Ryan Guerin, Stephen L. Gumport, Kenneth Hagen (MS & Lyme), Robert Michael Hanson, Peter Edgar Hare, Lila Star Smith Harms (suicide), Harry Hartner (suicide), Angela Quinn Hausman, Susan Hawkes-Koons (ALS & Lyme), Michelle Heap, Sue Ellen Helms, Alexandria Hermstad (ALS & Lyme), Stephen Allen Herring, Michael Hinsberger (MS & ALS & Lyme), Deanice Hinton, Brian Hirsch (ALS & Lyme), Robert J. Hoffmann (ALS & Lyme), Ted Paul Richard Hoggard, Barry Horton (ALS & Lyme), Hilary Fuller Inks, Everett “Ed” Francis Ives, Vincent Jachetta, Hartley Everette Jackson (Alzheimer’s & Lyme), Karl Joedicke, Glenn Edward Killion, Dillon Jamison King (suicide), Lindsay K Kinneberg, Catherine Klapak, James Paine Koch, James Kohnle (allegedly murdered by his wife, allegedly due to his Lyme), Theodore F. “Ted” Kotula, Vernon Dale Kyle, Christina Marie “Christy” Lambeth, Erwin Lamp (suicide), Jon Pierre Lavallee, Jena Hellman Leblang, Jason Thomas Lee, Michael G. Linebaugh (ALS & Lyme), Jan Linton (self-defenestration – verdict of death by misadventure), Vicki Logan, Preston H. Longino, Ellen Agnes Loughlin, James “Jim” W. Loughran, Teresa “Terri” Royer MacKnight, Gabriele Magnotta, Bruno C. Malvezzi, J. Howard Marshall Jr., John Martini, James Roderick Mason, Alfredo Mathew Jr. (suicide), Susan Mayer-Smith (died of self-medication against the pain), Ann H. McChesney, Kimberly Carol McEachern, David A. McHoul, Karl McManus, Edward L. “Ted” McNeil, Chester A. Mellen, Kelly Renee Merando, Balsorah Lamar Miller (ALS & Lyme), Liz Missett (Lupus & Lyme), Craig W. Moon (Leukemia & Lyme), Shirley L. Moore, Jesse Jonah Goldsmith Morgan, Richard T. Mullin, DeWayne Murphy, Theda Myint (suicide): Kaiti Nagel, Steve Nelson, Michael Newman (set himself on fire – open verdict), William “Bill” Lee Nichols (suicide), Georgia Junior “Junie” Nicol, George Nijboer, James B. Olson (initially diagnosed with Asthma, then ALS, then Lyme), Ed Parker (ALS & Lyme), Brett Anthony Paul, Pat Pepper (ALS & Lyme), Gilbert “Gib” Thornton Perkins, Jennifer Elaine Pesci, Andrea Ortiz Peterson, Brian Pierson (ALS and Lyme), John Thomas “Tommy” Pitner, John Douglas Powell (ALS & Lyme), Isabella Radestock, Andrea Raphael, Russell Paul Reach, Teresa McGilley Redlingshafer, Amanda Reese, Frank Ray Rifkin, Kevin Ring (suicide), Meredith Ruth Roberts, Thomas “Curry” Roberts (suicide), Richard R. Robley, Karen Johnson Rose, Adam C. Rowett (suicide), Harold Roy (likely suicide), James Sanders, Jim Sazani, Timothy Alan “Tim” Selepec, Amanda Schmidt, Stephen Ross Seibert, Priscilla Moulton Shafer (ALS & Lyme), Mary Shea (suicide), Steve Philip Shears, Cailean Walker Sheeran (suicide), Hilary Skinner (suicide), C. Gordon Smith, Roberta J. Sorbello-Luongo (ALS & Lyme & coinfections), Vincent Sota (ALS & Lyme), Johnette B. Sowder, Erin Elizabeth Spillers, Robert “Robby” Stamps, Beverly Stanton, Lori Hall Steele (ALS or Lyme), George R. Strobo & Jonalyn Maureen Strobo (dual suicide, both had Lyme), Karen Sullivan (suicide), Jodi Lynn Swift, Christopher Peter Thomas, David Lee Thomas, Mike Thomas (ALS & Lyme), Jenny Umpress, Clarissa Tilghman Yost, Philip Trapolsi, Cynthia Tolles Tseng, Carlton Tucker (“fudged number”), Jenny Umphress, Myrna Vallejo, Piet Van Leer, Diane Marie Antonia Varsi, Peter Vyselaar, Bryce H. Wagner, Sterling Edgar Walton, Ellen Havican Watson (likely suicide), Barbara Frances Weaver, Steven F. Wells (ALS & Lyme), Leslie Rae Wermers (Lyme & coinfections. Interview from 2007, died in 2008. Official cause of death: “cardiac arrest”..), JoAnne Whitaker (invented the 100% accurate Q-RIBb test for Lyme), George Wendell White Jr. (suicide), Robert Earl Wicker, Michael Wilson, Travis Allen Wilson, Lori Lynn Daman Widlund, Joyce Marie Woods, Kendall Wooten, William James Zell (ALS & Lyme). All these people could have been saved when a timely diagnosis would have been made and proper treatment would have been administered. 13% commited suicide. Relatively many of the people listed were MD’s. It seems that MD’s have better access to accurate diagnoses, but not to effective treatment. If you have a name & URL to add to this list, especially someone with a dual ALS & Lyme diagnosis, please email sarah@owndoc. It is of the utmost importance that antibiotics-provoked Lyme tests are done to exclude Lyme when ALS symptoms are present, since 15% (35 of 229 people) had both ALS and Lyme, which is statistically impossible if they were not causally related, implying that the Lyme caused the ALS. Move Heaven and Earth to get a proper Lyme test (antibiotics-provoked Western Blot, PCR etc., no ELISA) and, when positive, do not accept a dual diagnosis. Demand to be treated agressively with sufficiently-dosed antibiotics that penetrate the blood-brain barrier and make sure you’re treated open-endedly until all symptoms have subsided. This usually takes years, if ever. If you test negative, this does not at all mean you’re not infected. Lyme tests are notoriously unreliable, to the point where they have become practically useless. Patent law compliance make them unreliable. The selection and result interpretation of the Western Blot makes them more an instrument of cost avoidance for insurance companies than a diagnostic tool. Lyme disease is a clinical diagnosis – no positive test required. My site on Lyme causing ALS + free book (PDF) Update 1: Many more other Lyme-deaths are listed here: Update 2: It has become imposbile to track the Lyme deaths because people are literally dying with the rate of several a day now. This video is illustrative and even typical of the ordeal Lyme patients go through before finally having to commit suicide. Rest in peace, Heather Keena. She walked in front of a train soon after this video was made. heather-keena heather-mother Heather with mother Are you like Heather – desperate and about to commit suicide? You should realize that you do not need a LLMD! Oral Minocycline and Doxycycline work as well as intravenous treatment. The latter antibiotic is very cheap and available from lifestock doctors or veterinarians, from Mexico or India, etc. Even when you are close to death, oral doxycycline works no less than IV Ceftriaxone. You would need 400 to 600 mg/day though, also depending on your weight. We are not doctors and this is a personal opinion only, not medical advice. Antibiotics initially can make symptoms worse and may cause semi-permanent localized inflammations due to the “showing up” of dead bacterial fragments to the immune system. Recovery will be incomplete and will take years, with improvement only measurable in months. You have a helpful point of view or interesting info to add? Email editor@owndoc for possible publication below. Nicolas Hugon: Nicolas from France with Lyme disease and begining to have ALS. I will suicide this end of month. Lyme since 2010 cookiecruncher: Now….you have to write a book about psychiatric disorders ( or misdiagnoses) and lyme. I have heard of so many misdiagnosed as bipolar and institutionalized. My doctor said about a hundred of his lyme patients were institutionalized! I myself was thrown into a psych unit when i was going through lyme encephalitis. I was fortunate that the psychiatrist let me b discharged so i could see a dr. Then i started falling and vomitting. There are others who `behave and take their meds` but then they need to stay so they can b monitored, and then given another medicine for the pysch. Med thats making them nuts…and then They are made into a pysch patient when they have a brain infection. Luckily not every lyme patient goes through this, but there is a percentage that does….Being knowledgeable and getting the word out is key. Lady Selene: I have chronic lyme, I have gotten Bell’s palsy 9 times. I had stents placed in 2 of the 3 major arteries to ht e heart. I had a great career, now, because of bi-lateral BP then a year later another flare up of BP I’m unable to work. Lyme has made me disabeled, a dropout of life. I can’t talk, eat, drink, close my eyes. I’m unable to see well enough to drive some days. Some days I’m unable to get out of bed, however the pain is too intense to stay in bed. I stay in my house alone all the time. I feel like a monster. I have NO Life. I got a divorced 19 years ago, Lyme was partially to blame. I lost ALL memories, ALL emotions. I was a living dead girl for years. I’m on 3 antibiotics, and a daily IV. I am hoping to get better, some days I get very depressed and feel like ill never be well or look normal again. Time will tell?!?Sarah’s reply:I’m very bad in the empathy-and-emotional-support-department, presumably because I am an aspie. So there is nothing really soothing I can say to make you feel cared about. All I can say is that I’m truly sorry for you. I know **exactly** what you’re going through because I went through it myself for many, many years:owndoc/…/the-best-treatment-for-lyme-disease…/And if you read that article (it’s very recent so it needs some more work) you see that there is hope. I went from a suicidal wreck with all the symptoms you describe to more or less my old self again (well, an older version that still suffers from the fallout of over 15 years of inactivity and insomnia and I still am moderately ill with Lyme disease but it’s very bearable compared to how it used to be).The good news is that IV antibiotics are NOT required at all. This is not some “opinion”, I have this from medical literature and own experience as well as anecdotal evidence. Further good news is that neither are three antibiotics required. I know all about the various theories and scientific evidence out there about “cyst busters”, “toxin binders” etc. but the reality is that using just one cheap generic antibiotic (Doxycycline), dosed properly, you can get from wishing to be dead to enjoying life again. However, Chronic Lyme disease, like Neurosyphilis, takes years of the correct antibiotic treatment to significantly improve.More good news is that there is no evidence that Borrelia becomes resistant against Doxycycline. That is, more than it already is, because basically you can never kill all spirochetes with Doxycycline or with any other known antibiotic, it seems from the medical literature on treating chronic neuroborreliosis. But the lack of resistance means that you, with the proper treatment, will get better and better over the months and years until, years later, you feel pretty good most of the time again. And then your current suffering will be partially healed by time. My journey through hell lasted years and was very, very traumatic in many ways, not just suffering-wise but also it opened my eyes as to how the people around you don’t really seem to understand or care – let alone the incompetence and indifference of the medical profession. But I have a new lease on life now and don’t think about that time any more. I’m not exaggerating when I say it was very traumatic. I am one of those people who thought they would NEVER commit suicide. It’s a combination of principles and fear of death. But my Lyme-suffering changed my mind about suicide. I am now desperate to have a way out, even if my situation deteriorates to even significantly better as how it used to be at its worst.What you have – too much pain to stay in bed, I had that too for about ten years. It causes lack of sleep and that weakens your immune system. But it will go away when you treat properly. You *must* take afternoon naps. Between around 15:00 to 18:00 you’re at the “low point” of your circadian rythm and you have the biggest chance of being able to fall asleep.I was also unable to drive for years and I thought I’d never drive again. After many years of not touching a steering wheel, I now routinely drive through Europe in our RV and through busy city centers during rush hour. There is hope!The further good news is that the bad shape you’re in is NOT caused by bacterial damage. It’s your immune system causing inflammation everywhere, both inside and outside your CNS. You’re “allergic” to the bacteria. That is typical for Lyme. The medical literature noticed that the immune reaction (inflammation) is extremely strong for such few remaining bacteria. So strong that it’s an enigma. The good news is that you have not much lasting damage. You say you had Bell’s Palsy several times. That means Bell’s Palsy gets repaired by your body, even while still having an active infection and the associated inflammation.But also real nerve damage is rarely permanent. I had much reduced use of my left hand for years but it slowly returned to normal or nearly normal. That takes at least 5 years.Another thing to realize is that _some_ antibiotics, especially Doxycycline, can cause severe bouts of clinical depression. Suicides can be found in medical literature attributed to the chronic use of highly-dosed Doxycycline. You have to realize that, to be able to cope better.I also had the bloated face, terrible skin rashes etc. I was unable to fully open my eyelids. Often I had vasospasms in my eyes that hurt so much I could not suppress screaming of pain. That still happens occasionally and it is very dangerous when I drive. I have to pull over immediately because I can not see because of the tears and the squining from pain. It seems to be triggered by bright light or a breeze on the eyes so I can take precautions and take a break when I feel the onset.Also I lost my emotional self and my memories. I forgot the names of nearly everyone from my past. I was unable to relate emotionally to my husband anymore (or to anyone for that matter). As you put it, I was a zombie, a walking dead person. Outsiders don’t understand that the “zombieness” is not due to some kind of egocentric “coping” but that the brain simply is not processing any “finer signals” due to the neuronal inflammation. We suffer real brain damage – but fortunately it is reversible!Please look into oral treatment with Doxycycline, at least 300 mg/day if you are petite, but most people need at least 400 mg/day. Read my article about pulsing Doxycycline (URL in this answer). Doxy gives very severe fotosensitivity but it is the price you pay. Since you will be hopefully pulsing, you can still be in the sun on the “off” days. (24 hours after your last dose).I can almost guarantee you that you will see sustained monthly improvement when you switch to nothing but an oral Doxy pulsing regime but you have to experiment to find what’s right for you. Good luck! Dave: i got lyme when i was 16, given antibiotics. felt better but carried symptoms. (chronic lyme) got an elisa test when i was 25. lyme positive-stage five. not sure what the stages mean? 30 day supply of antibiotics. still feel like crap everyday. now i’m on paxil and adderall to treat depression, anxiety, and a.d.d. im pretty sure “I NEED VISION THERAPY” to treat my visual focus problems although my glasses make me see clear already, but my eyes twitch and do weird things with depth perception. i need to go to a chiropractor for my back aches, neck aches, knee pain, headaches, sore feet, arthritis, and other joint pain. i cant ever stay in comfortable position, standing, seated, or lying down. i walk akwardly and clumsily because i lost my sense of balance. i’m known as the weird quiet kid because i dont talk in more than one syllable words. my tounge feels like its choking and gagging me all the time and my jaw feels like its gonna fall off. and then theres my hyper sensitivity, loud noises, bright lights etc. shortness of breath, accelerated heart rate… blah blah blah. now im gonna DIE!! who saw that coming? oh yeah and my dark sense of humor and lack of interest of everything except my own symptoms. I guess im selfish that way. The few friends i have left tell me I’m fine. i just think to much and i have to stop being stubborn and step out of my comfort zone. that will fix all my problems. Thanks for the great info. tera: I think it is horrible how we are treated with Lyme disease, I feel that change has to hurry up and get here, before more of us die.. Steve Boland: I have Chronic Lyme and LLMD less then three blocks from my home… She does not take insurance and I am now broke. I will die from this disease but sadly it is a very slow and painful death. I am being weNed off my narcotics by my LLMD, because that would relieve her of her final responsibility for me as a patient. The money is gone and so goes the treatment. I live in chronic pain the can make my vomit and put me into a seizure. I am on a horse disease on the highest dose of neurontin with zero pain relief. I have extreme neurological distress and the pain is horrific. I know like many on this list, I will also soon be a statistic. If your not one of the suffering, you simply cannot understand the tragedy. People there is help if you have the time and the money. If not and the disease is advanced, prepare to suffer until the end. Republishing this article is prohibited. Violations are subjected to a copyright license fee.
Posted on: Sat, 24 Jan 2015 07:50:37 +0000
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