Dying of Lyme disease: Case fatality rate nearly 100%
If you have Lyme Neuroborreliosis you likely will likely succumb to it eventually if you don’t receive proper, open-ended treatment.
Because the big problem is that the overwhelming majority of neuro-Lyme are misdiagnosed as something else. Example: Lyme disease (neuroborreliosis) is a common cause of ALS, but ALS as a “disease on its own” is more profitable and prestigious, so if you have ALS symptoms and test positive for Lyme, you’ll get either an ALS diagnosis only or at best a dual diagnosis ALS & Lyme. That’s just how the medical profession and the pharmaceutical symptom relieving industry works. Instead of identifying a common cause for the myriads of neurological syndromes with unknown cause, they prefer to split them up into separate “diseases”, each with their own self-declared experts, patient organizations, government subsidies, research grants, charities and magazines. There are countless of such symptom-descriptions-presented-under-the-pretense-of-actual-illnesses (such as MS, Fibromyalgia, “Multi-focal Motor Neuropathy” etc. etc.), and therefore it is impossible how many people die of Lyme disease each year. We think it should be clear that many or most of these neurological syndromes are caused by Lyme disease.
My (freely downloadable) book “When ALS is Lyme” documents how neurologists greatly oppose using Lyme tests to rule out Lyme in cases of suspected ALS, and that Lyme tests are nearly never performed on suspected ALS patients. A big disgrace, implying that the great majority of neurologists (6 out of 7, as documented by their own data quoted in my book) are ignorant in regard to both Lyme and ALS. One can only assume that they are afflicted with a combination of mainly medical incompetence, but also perhaps corruption (a patient with a diagnosis of ALS costs an insurance company very much less than someone diagnosed with Lyme neuroborreliosis).
The definition of “case fatality rate” (often confused with “mortality rate”) of an illness is the percentage of people who die while they are still not cured of that illness. That implies that the CFR is an imprecise metric, it encompasses deaths due to the disease and deaths due to other causes. 3rd stage Lyme in the CNS is, contrary to what the medical establishment claims, incurable with currently available treatment. All that can be done is slowly reverse the symptoms, and only when proper oral or IV antibiotic treatment is administered for as long as symptoms persist. The patient usually remains more or less ill for the remainder of his or her life.
There is a great discrepancy between the real CFR of an illness and the oficially reported CFR, because in order for a death to be logged as caused by an illness, a coroner must state that illness as the cause of death in his report. Let’s say you have Lyme disease caused by let’s say Borrelia garinii and you die of a second-degree atrioventricular block. The coroner will state as the cause of death: “Sudden cardiac death”. Not “Lyme disease”. That is very unfortunate, because it keeps the Lyme CFR artificially low. But it keeps the infectious disease specialists and neurologists safe from malpractice lawsuits, and they are grateful to the coroner for that of course. Often, the coroner works for the same hospital as the treating specialist.
Lyme is nearly never stated as the cause of death, to protect hospital and doctors from malpractice lawsuits.
This is but one of many ways Lyme’s CFR is fraudulently kept in the single digits It is usually stated to be <1% and when you try to find an exact figure, you’ll be told something like “noone has ever died of Lyme disease”. Instead, I think it is more accurate to state that when left untreated, late-stage (chronic) neuroborreliosis will eventually kill the patient.
I could not locate a picture of an iceberg with only 0.001% of its tip above the water (probably because that would defy physics) but what I’m getting at is this:
The famous “Do not blame on malice that what can be adequately explained by ignorance” fits in nicely with Occam’s Razor, and it is true also in the case of the spectacularly understated Lyme “mortality rate”: What I call fraud can be more accurately described as a mixture of ignorance, cowardice, deference to authority, intellectual laziness and greed. No massive Lyme conspiracy, just ordinary human behavior. There are conspiracies involved as well, but they remain limited to a silent understanding between peers here and there. The medical system protects itself and that is only natural.
My picture of the iceberg may cause frowning of eyebrows. I am an old lady so I don’t use Photoshop, instead I use Paint Shop Pro from the previous millenium and I managed to produce the following illustration of how I think neurospirochetoses (spirochetal infections of the CNS (brain and spinal cord)), and Lyme in particular, are the cause of nearly all neurological syndromes with unexplained etiology (cause):
That stuff in the center are spirochetes and their cysts, L-forms and “blebs” (DNA granules). Several syndromes are omitted, such as Fibromyalgia. Usually, normal people (“neurotypicals”) base their opinions on what is the dogma in their hierarchy of choice. However, as a high-functioning autist (Asperger’s syndrome), I never form an opinion without getting very thoroughly informed first, and that includes all sides of a story, all points of view. I never pick an opinion based on what I’d like to be true. I base my opinions on a genuine curiosity into discovering the truth. I have Lyme disease myself. For lack of much help from the medical profession, in my quest to self-treat myself out of this mess, getting informed about this subject meant turning it into a special interest involving 15 years of self-study in medical literature, but also digging through countless anecdotal reports by patients, original research and my own experiences and treatment experiments with Lyme disease. Not to mention my communications with microbiologists. Now, when most people say they’ve “studied medical literature” they mean they read an abstract here and there. When I say I studied the medical literature, I mean that instead of doing all kinds of nice things in summer, I spent it mainly purchasing studies and going over them with a fine-tooth comb, then correlating them with other studies. Eventually, out comes a book or an article, such as with my free eBook on Lyme disease as a frequent cause of ALS and my “bestseller” (> 15000 Facebook likes, yay!) on Lyme as the cause of Multiple Sclerosis. I intended to write a book on Lyme as a major cause of Alzheimer (Microbiologist Judith Miklossy found that the brains of Alzheimer patients contained in 25% of cases living Borellia bacteria, and in 75% of cases oral Treponema (also spirochetal bacteria)). But since I got lambasted beyond the pale when I started giving away my Lyme/ALS book, I decided to leave the connection between Spirochetes and Alzheimer as an excercise for the reader. I think I made my point very well – my article about Lyme as the cause of MS contains so much hard evidence that it is impossible to dismiss as “opinion” or “conspiracy theory”.
The theory of unexplained neurological syndromes being caused by neurospirochetoses is taboo in the medical world, in spite of the overwhelming evidence for it, and the lack of any other credible explanation. If this theory would be correct (I strongly believe it to be) it would mean that the number of Lyme sufferers is orders of magnitudes greater than thought, and that nearly all are dying of it. See my article on MS and Lyme for an argumentation on why the officially reported CFR for MS is also fake. Meanwhile, people with ALS and Alzheimer’s are dying. Lyme patients are dying too, in ever increasing numbers. Yet spin doctors employed by the US government say that over 99% of coroners were wrong when they listed Lyme as a contributing cause of death:
“Lyme disease was listed as an underlying or multiple cause of death on 114 death records during 1999–2003. Upon review, only 1 record was consistent with clinical manifestations of Lyme disease. This analysis indicates that Lyme disease is rare as a cause of death in the United States.“
So those few coroners who still haven’t gotten it into their stubborn heads that Lyme is never, ever lethal are now publicly chastised by the US government. Who cares that those dead folks had positive Lyme tests and their doctors and the coroner think they died of Lyme disease. The pencil pushers employed by the bioweapon-affiliated Center for Disease Control (is that NewSpeak?) says those coroners should get their act together. And they are at the top of the food chain, so they must be right.
In spite of the fact that their deaths are “whitewashed”, the list of mainly Americans who died as a direct consequence of their neuroborreliosis is ever growing. Many of the people listed below had a dual diagnosis of ALS and Lyme, tying in with my hypothesis that at least a large percentage of ALS is caused by Lyme. There are many more of which is said that they died of Lyme disease, but unless I could easily find a verification of this from a reliable source (obituary written by family or newspaper), I have not included those names. I also ensured that deaths due to other tickborne diseases were omitted as well. Only people with a positive Lyme test administered by a medical doctor are included in this list, and only people whose cause of death was Lyme disease itself (mortality) or medical complications of Lyme disease (comorbidity), or suicide related in the presence of serious Lyme disease. So people who had Lyme and Lupus or Lyme and cancer are not on this list, neither are people who at one point in their lives had Lyme and died of unconfirmed causes. Many names on LymeMemorial.org did not die from Lyme disease but other tick borne infections such as Ehrlichiosis, Crimean-Congo Hemorrhagic Fever, FSME, Rocky Mountain Spotted Fever, Bartonella or Babesia, but the below list has been carefully vetted, with links to a source. LymeMemorial.org is not considered a reliable source unless they quote and reference a published obituary that mentions Lyme, so if we could not find another source I omitted the name, even when we could find that the deceased left a legacy to a Lyme charity. I removed hundreds of names that way, people who all allegedly died of Lyme disease. Please do not copy this list but link to this article instead, as I’ll keep updating it and keep adding more authorative links and will keep replacing broken links. This list provides important evidence that Lyme is a common cause of ALS because the statistical likelihood of having both diseases is extremely much smaller than what is found in obituaries.
This is the tip of a huge iceberg. The only people on this list are people of which a still-available Internet-published obituary mentions that they died as a consequence of officially diagnosed Lyme disease. These are the needles in the haystack, where the rest of the “hay” also died of Lyme..
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 (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 firstname.lastname@example.org.
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-enededly until all symptoms have subsided. This usually takes years.
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.