Dying of Lyme disease: Case fatality rate nearly 100%

If you have Lyme Neuroborreliosis you 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 is 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 hospitals 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 (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.com.

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: (http://ireport.cnn.com/docs/DOC-1037462)

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 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.

1.  tera    Friday, April 5, 2013

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.

2.  June Ellen Arruda    Friday, April 5, 2013

I don't know what to say, except I guess I am on my way out with chronic Lyme?

3.  Patri Juan    Saturday, April 6, 2013

Deeply appreciate your information!

4.  Guest    Sunday, May 5, 2013

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. <------ i siincerely mean that. Great article. and thanks for letting me share-dave

5.  Jason Carrasco    Sunday, May 5, 2013

There will never be a cure for Lyme. Insurance companies would be crippled. You know as well as I that will never happen. I refuse to die from this disease. Jesus can and will heal you if you keep fighting and refuse to give up. I beat neuro-lyme, I don't care what Doctors or Authors think. Read Psalm 103 everyday, and EAT right! Juice dark greens EVERYDAY. I've learned that lymies can't let go of their sweets. Most lymies are not willing to make the sacrifices needed in their diet. I don't care what the world tells you, ALL things are possible with God!

6.  Divegirl Deb    Monday, May 6, 2013

This is so me right now...What Lyme Disease has done for me: I have been
sick with fibromyalgia, fatigue, brain fog, depression & pain since
a work related injury 1984. I was first diagnosed in 1991 with
Fibromyalgia, I call it walking rigor mortise ~ I feel like my
body is turning into stone. I have a debilitating chronic condition as
39-past doctors ignored it, the 53-prescriptive pharmaceuticals only
covered-up my symptoms. Many made me sicker, all certainly poorer.

Today: I have had no job for 25-months, 14-year home in foreclosure,
401k liquidated, no savings, zero income for all of 2013, no medical or
dental insurance, yet my health continues to decline daily. All my OMG
labs come back clean, my PCP is mystified. I have 98% of the clinical
signs of Lyme Disease. I've been hospitalized in the last 30-days. I'm
waiting another 5-weeks for my first IgeneX test, which I had to demand
myself. I carry this overwhelming sense that I have 6-months left to

I need an LLMD, yet I live in Oregon where they inhibit
my care! How do I navigate this upcoming battle with no resources?? How
do I save my life???

I'm angry, you bet. Our governments &
medical communities have lied to me and mislead me. I want my life back,
I want to work - I have goals, projects & family. I want to spend
time off the sofa and experience the world, the outdoors again, the
ocean. I've served my time with this debilitating chronic disease for
too long. I want to be healthy, happy & feel pain free.

7.  Lady Selene    Sunday, September 1, 2013

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?!?

8.  Sarah Vaughter    Sunday, September 1, 2013

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:


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!

9.  sunny77753    Tuesday, December 24, 2013

shame shame shame ... we are dying in huge numbers & 'they' are still lining their pockets ...

10.  Peter Doedens    Thursday, January 2, 2014

I think that most of these people did not die of lyme so much but much more of the antibiotics treatment or else of not treating it properly with natural remedies. I have neuroboreliose for 6 year and living a good life with Doug Coil machine (freq 432 and others) and an ozone sauna (flat bad). I am not being cured, but I can work a normal job, as long as I use the therapies mentioned regularly.

11.  Sarah Vaughter    Thursday, January 2, 2014

At first I first thought you were merely stupid, but I thought noone can be _that_ stupid _and_ insult the memory of those who died of Lyme disease _that_ callously. Only a psychopath would do that. So I searched for who you are and what you do and discovered you are indeed an unscrupulous scammer and a spammer, taking advantage of sick people to peddle your super-expensive, wholly ineffectual "Doug coil" you're now also peddling here on my site!

A simple Google search shows you own Health Barter .nl, where you sell that "Doug coil" crap, and your partner-in-crime Bryan Rosner has been exposed by me here already:


Peter Doedens charges up to 15000 dollars for his quackery coils!

You, Peter Doedens, are now forever exposed as someone who makes his money trying to persuade sick people not to take their medicine, and selling them expensive garbage that does not work.
You've been spamming to sick people, promoting your "doug machine": http://hopeforlyme.nl/e...

The full details of the scammer:

Peter Doedens
Prins Hendrikkade 100/3
1011 AH Amsterdam
The Netherlands
tel. +31-(0)630504240 (mobile)

His photo can be seen here:


Does that hat look familiar? It's the same hat that the scammer Jim Humble likes to wear:


12.  Sarah Vaughter    Friday, February 21, 2014

600 mg/day of Doxycycline would virtually guarantee that you'd slowly improve. I am not a doctor and this is not medical advice - just my personal opinion. Doxy can cause reversible organ damage when taken for many months in too high a dose (depending on the weight of the patient and liver- and kidney function.)

13.  Steve Boland    Monday, February 24, 2014

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.

14.  giovanni    Friday, April 18, 2014

Lyme disease left untreated in prison after many complaints about unknown illness. I was in jail for the first time in jamesburg, a juvenile prison and was only suppose to do 5 months if on good behavior but they falsely accused of a crime of fighting but never knew or signed off infront of paralegal or hearing officer but found out when I seen the parole board. I know the victims family works for the state and had to do something about me staying longer in jail. I been assaulted many times and never fault back because I wanted be release.
My main issue is I was dealing with something I never knew I had just knew I felt like I was about to die. I ended up spending a year on good behavior and 3 months on parole, my sentence was 15 months. When I got released after all the complaining I said about my headaches, and being yelled at for being lazy, always tired and weak, I got diagnosed with late stage chronic lyme disease. I suffered all year fighting this disease and dealing with the prison system without them giving me proper care since I was in the states hands . My life threatening situation had my life at risk I could of been seriously dead. After I got released I decided to do more check ups like I did before prison to find this problem thanks to my mother because I was not able to hardly move, always slept and head always in pain, every single day. I was left in my cell with nobody caring about me, sometimes left because they didn't check on me. Though I am thankful im still alive to say my story so this wont happen to no other human being. The way my immune system was fighting this disease was truly difficult but I have all proof, I told them from the beginning I am dealing with a health problem and got medical proof I was diagnosed after I got released so for a year i suffered pure pain. They diagnosed me with TB, when I told them I didn't have that they still forced me to take the pills everyday of my sentence stating if I don't take it I will get a charge, and being as though I wanted to go home I had no choice. Them pills increased to my depression, and gave me health problems such as blurry vision. The correctional officers was corrupted, and told inmate to assault me for no reason. Being a adult in a youth prison since the offense happen 3 years after so I stayed on being in best behavior but constantly going through pain in my head, and started have breathing problems with the pills they gave me for something I didn't have but also get assaulted in the shower when correction officer suppose to watch us at all times. Also administration knew about inmates I reported they are trying to assault me, and they put the same inmate in my unit, and the same night I got assaulted while on phone with my mother that got me head, and jaw injury. For my civil rights being violated, with the cuppurtion within the system. I want to be represented for a lawsuit for 40 million dollars, and who ever responsible be fired from they position

15.  Sarah Vaughter    Friday, April 18, 2014

One word: Doxycycline. Or Minocycline, but that's hard to obtain and very expensive..

16.  Sarah Vaughter    Friday, April 18, 2014

I wonder how many % of people convicted for violent crimes (not that I'm suggesting you have anything to do with a violent crime BTW) got violent just because of the extreme irritability and lack of emotional self control Lyme disease brings with it..

17.  cookiecruncher    Monday, April 28, 2014

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.

18.  Nicolas hugon    Thursday, June 12, 2014

Nicolas from france with lyme desease and begining to have ALS
i will suicide this end of month
Lyme since 2010

19.  umberto smith    Monday, December 7, 2015

The brain fog and fatigue is horrible. I have aches and pains, but nothing bothers me more than having a mind which can never be utilized.

A little spirochete will take away my 220 pound soul. It is what is. I can't fight it anymore.

I don't want handouts. I just want treatment.

20.  Sarah Vaughter    Monday, December 7, 2015

There is a little ray of light though: The aches, pains, fog and myriads of other symptoms is a sign your brain is inflamed, and that is a sign the spirochetal load is very low says Judith Miklossy and I agree, meaning you have no actual brain damage going on. I went through years of no such symptoms but actual brain damage occurring - until I went on antibiotics and then my life became a living hell - but my brain damage very slowly reversed. ALS-like symptoms disappeared over the years, my IQ slowly rose to to back where it was before - but then I got too many nasty symptoms to list. They very slowly got better over the past 15 years but I still have aches, severe insomnia, inability to concentrate much mood swings etc. Keep taking Tetracycline-based antibiotics and keep hanging in there. Thing will get slowly better but you must take highly dosed abx every day for years.

21.  alisagremore    Tuesday, February 2, 2016

You can add my brother's name to the list (suicide.) I contacted whoever to donate and was told by the head of the institution, ( I can't remember) they did not need his corpse they were inundated with those. They did not have enough money to hire enough coroners. Would that be IDS? I have neurob also. I could not understand or even try to understand your post. But I will be back and I will read it word for word when I am fresh. I only know the spirochetes got in my brain and the antibiotics can't cross the blood barrier to get to the spirochetes. If you write a book and need someone to tell what it did to every area of one
woman's life here I am. Thank you so much for your extensive research and for sharing this post.

22.  Debbie Thompson    Tuesday, April 5, 2016

The doctor who saved my life in 2007 gave my girls a clinical diagnosis of congenital Lyme Disease, due to the fact that I was undiagnosed/misdiagnosed for decades. My youngest's doctor was up in arms about the diagnosis, demanded she see Infectious Disease at their hospital, and the diagnosis was changed to "fibromyalgia". All her horrifying symptoms were blown off for years. They denied Lyme, but pushed Gardasil, too. They said when she hit about 12 years old, that she was a high acheiver and just "stressed out", and tried to open the back door shrink med scam. (Was already onto that one) She finally received a diagnosis on October 11, 2014...stage four Alveolar Rhabdomyosarcoma. Undiagnosed/misdiagnosed infections set the stage for cancer to flourish. They ignored the history, and the fact that she was septic (runaway taxi accident in NYC (Dec 30, 2015) caused swelling, sepsis, doubled the pain she was in...denied medical care for that...they blamed it on the tumor) She passed away on February 28, 2016, in the most torturous of ways, thanks to medical negligence, arrogance, contempt for patients, cost cutting (refusal to run needed tests)...shall I go on? She was 19 years old. Rest In Peace, Brianna Brane.

23.  Cash Johnny    Friday, May 6, 2016

Debbie I'm so so so sorry, I have many in this list I've become friends with and no longer are they here. A few helped me when I was down with so much pain and suffering and where uplifting me, now I'm a little better and they are gone......It's awful.....and I can't wait till I see the day the Oathless Doctors and so many pay for their crimes for our suffering and/or death.

24.  Sarah Vaughter    Saturday, May 7, 2016

Hi Alisa. Doxycycline passes the bbb.

25.  BurntOrange    Wednesday, May 25, 2016

I miss you. I love you. I wish you had waited....

26.  Grace    Sunday, July 3, 2016

I was so sick , weight loss to 95 lb, , tremors, dizziness light and sound sensitivity rash wheezing blurred vision and brain fog, neck pain one day my heart started beating 200 beats per minute I had million tests eight lyme tests, two with through IGENEX .all negative Finally an answer I had mycotoxin poisoning which shares many of the same symptoms as Lyme and I can say the suffering is out of this world it is like a Near death experience . I met many Lyme sufferers in the IV room it took me two years to get well . But I want everyone who has Lyme to know they will find a cure and it will be soon , John Hopkins doctor are working on cure and they will get it pray for them! There is an epidemic back east and I know in is in the pacific NW and spreading fast they must find a cure . Do not give up pray to God to give you strength , courage perseverance and I praying for all of you to be healed

27.  Walking Dead Guy    Thursday, July 21, 2016

It only teook 17 years to get my positive western blot test, 1 year of treatment, followed by 10 months of treatment related stomache and GI teach issues. On January 4, 2016' my body was so weak end I went into respiratory failure.
After drischarge from the hospital, 1 had the best 9 weeks I'd had in almost 20 years. Then the Lyme/babesIsis returned with a vengeance. While in the ICU I'd been treated with high dose corticosteroids and upon discharge I was put on a 21 day tapering of prednisone.
Researchers in Sweden and endemic areas of the EU have listed corticosteroids and prednisone as contraindicated for Lymes patients. There research indicates that with treatment like I received, approximately 2 weeks later patients will relapse with neuroborreliosis (neuro-Lyme). This best sucks, but at least me primary doc was willing to review the research and quickly got me set up to see an Infectious Disease Specialist at out local teaching hospital. Hopefully I will find some help, if not my actual 20th anniversary of onset is coming up; I believe 20 years of hell is enough.

28.  Sarah Vaughter    Thursday, July 21, 2016

Sorry to hear that. You can fight it with Doxycycline though, that you obtain on the black market. I have done the same since 1999. Without a Tetracycline family antibiotic, a horrible death is certain. But when you take around 500 mg/day of doxy for the rest of your life, things will gradually improve to a bearable level.

Doctors are utterly incompetent or even corrupt bureaucrats. I called this site owndoc because I wanted to teach people like yourself to save their own lives.

29.  Jennie    Sunday, July 24, 2016

I've been thinking of treating myself with antibiotics since I'm too poor to pay for a LLMD. I'm literally dying from having it over 25 years and not being able to afford proper treatment. I have lots of awful neurological issues along with many others that have stolen my life. I can barely function so I rarely go anywhere and I'm nearly bedridden with very little help and understanding. I'm left to fend for myself all alone most of the time and am in real danger of being forced into a nursing home where I know I'll be treated horrible. How would I get the antibiotics I need to treat myself at a cheap price and ensure I'm using a reliable source? Unfortunately I can't take doxycycline nor monocycline because of their side effects such as really bad intracranial head pressure especially.So what antibiotic would I take and how much a day which would work just as well if there is something as such?

30.  Sarah Vaughter    Sunday, July 24, 2016

The intracranial pressure thing is a serious issue, esp. with Minocycline. It seems to be to a certain degree dependent on the progression of the infection as well as the manufacturer of the product.

I experienced intracranial pressure so severe a few years ago on Russian-made Minocycline that I thought I was in danger of dying, and I probably was. Doxycycline is far less problematic in that regard.

I think that when you experience intracranial pressure with Doxycycline, which I also experienced in my first years on the drug, that this is not a side effect of the medicine itself but part of the Jarish-Herheimer reaction or otherwise a physiological phenomenon related to increased inflammation due to the dying and partially increased motility of the spirochetes as well as immune system actions.

So you should "deal with it" as much as you can, for as long as you can, and keep taking a sufficient dose. I had bad experiences with pulsing (intermittent dosing) and bad experiences with dosing too low. The average non-obese adult would need at least 400 mg doxy/day in order not to deteriorate. 500 to 600 mg/day are required to slowly improve. All the while, you will mostly feel absolutely terrible and you may be forced to skip treatment days or dose lower just in order to get some relief from the pressure-induced insomnia. You will sleep much better when serum levels of the drug are lower, so take the drug on strategic times. You can take all in one go for a different tissue level curve.

Over the years I got my antibiotics in bulk from China, declared as "pigment" or similarly from India. I also got them from a variety of understanding veterinarians in Europe. There are also the rare small companies that ship pharmaceutical-lab Tetracycline for culture experiments that is not "suitable", whatever that means, to be used as an oral antibiotic for humans to other small companies. I have ordered some, having read many positive claims about how this drugcan treat Neuroborreliosis well, but the Tet came with a warning to only store and transport it at freezer-temperatures and I wonder how effective the drug is when capsulated at home. I have not tried it yet.

Again, treating yourself with an effective antibiotic comes with the extreme suffering associated with the herx and your own immune system response. You will feel much worse for long periods. It's either that, or dying a most horrible death, or suicide. No easy choices for us. I have suffered greatly and continue to suffer, but I am much better than the first 5 years of treatment. I do not improve anymore and still rely on Doxy to keep me alive. Still have a lot of issues but the horrible neurological symptoms you mentioned are long gone - otherwise I'd have killed myself a long time ago.

31.  Walking Dead Guy    Sunday, August 14, 2016

Totally disgusted, after all this time I finally got in to see Infectious Disease Specialist at local, and very well respected teaching hospital. Doctor blew me off, after all because Chronic Lyme does not exist, we don't exist; She just held true to the CDC/NIH propaganda party line even though she was looking at a very positive Western Blot Test. According to her, my recent inpatient treatment for respiratory failure certainly would have killed off any Lyme critters and there is of course no such thing as relapses with Lyme Disease. Excuse the expression, but I truly wanted to give her a good Bitch Slap on the way out, but I have a very strong aversion to prison and Bubba!
Told me before she could do anything, I would need to see a Neurologist for a full work up to rule out ANY other possibilities for my symptoms, that I should have the Neurologist due a spinal tab to check for my microbial little friends or see if the Neurologist would order a Brain Profusion SPECT scan for possible Neuroborreliosis.
When asked why she wouldn't order these test to verify her diagnosis, or lack there of, she told me she did not see indications that would justify the RISKS that such testing would expose me to; yet she expects me to walk in to see some new Neurologist and somehow convince him or her to order the tests she herself refuses to order.
How can she tell me I don't have Lyme without even doing a hands on examination? For the first time in my life I found myself wishing I lived somewhere other than the USA, like in Sweden where they are doing real research and are providing real treatment per the latest ILADS treatment guidelines. Talk about an exercise in frustration.
Sarah, what is the approximate cost for Doxycycline through "back channel" sources?
P.S. Sorry for the rambling rant, but I really needed to vent after yesterday's waste of time and money! Good luck to all who are caught up in this twilight zone!

32.  dodieellen    Wednesday, September 7, 2016

Thank you for sharing. Just maybe someone else may be helped.I pray they do something for people suffering from this awful disease.I'm glad you found your problem and are well now.God bless.

33.  Blue    Tuesday, February 7, 2017

Giovanni, I am so sorry to hear about your fight. It´s hard enough trying to survive this out of prison, can´t imagine being in prison too and what you went through :(. I am too ill to understand everything you wrote but got the main point. I hope you will get better soon. Maybe Sarah´s advice is something to try. Also some people report getting better on all kinds of treatments like rife, ozone, herbs from buhner, cowden, zhang, white, jernigan and others. stephen buhner is the only one of these guys who don´t make money on the product by the way. doug coil is one rife machine that some people get better on. Some report success with gb4000 although it is just current going though the body. I feel the herbs I tried was not as strong as ab though, so maybe ab is better for you. Worth looking into at least.

34.  Francis Ray    Saturday, April 1, 2017

Though I had the telltale rash after removing a deer tick nearly eight years ago, I was not treated or tested because "Lyme does not occur in Ohio and I had not traveled outside the state". Over the next year I developed night sweats and chronic joint pain. Finally after several more months I did, through a bit of bullying, convince my Dr. to test for Lyme. Nevertheless, I did not prove positive for antibodies and my blood test were not showing evidence that I was suffering from infection or inflammation despite the fact that my right elbow was hot to the touch and had lost nearly sixty percent of its range of motion.
Since then I have been diagnosed with Fibromyalgia, then Polymyalgia Rheumatica, then Polymyositis and Chronic Fatigue. I have been treated like a drug seeker and allowed to suffer incredible pain. I have been forced to endure physical rehabilitation which only aggravated my issues. I have been referred for mental help and just plain laughed at. Sadly throughout I have been required, to no avail, to educate my caretakers of an illness that they have almost no knowledge of, only to be minimized and scoffed at.
Ironically my father was diagnosed recently recently with Lyme disease after his tests prove positive and he had not been out of Ohio in over ten years. Nevertheless, though he is displaying symptoms more relative to Chronic Lyme, he was treated with a 21 day regiment of Doxycycline, tested negative for Lyme afterward and was sent on his "not so merry" way, even though all of his symptoms persist. The ignorance is astounding.
Throughout my infection, I lost a wife, have surrendered a great job and for the most part, everything I ever enjoyed. In all, I have come to one conclusion. If Lyme suffers ever hope to be cured, they should first find a good malpractice attorney, because until there are financial ramifications causing health providers to actually cure Chronic Lyme, there will be no relief.

35.  Out Of Balance    Friday, April 7, 2017

This is absolutely unconscionable that the medical community is partly the cause of these deaths. Only until it afflicts them personally do they turn a corner and advocate. I'm so sorry for your loss and I understand as I'm in the same position as you.

36.  John Kleinsmith    Friday, April 7, 2017

Can anyone advise if there is any treatment to arrest the advance of Lyme Disease? I was bitten by a deer tick in 2014 and found a red ring around the wound 48 hours later. I received IV anti-biotic approximately 50 hours after being infected. The IV lasted an hour and during the IV the red ring deminished. I then took an oral anti-biotic for another three weeks, but still have advancing symptoms of Lyme Disease. I have seen several physicians and homeopaths during the past two and one half years but AMA employees tell me Lyme Disease doesn't exist (after receiving anti-biotic), and homeopaths simply prescribed herbs, which do nothing.

37.  Sarah Vaughter    Saturday, April 8, 2017

Life-long Doxycycline. I've been taking it daily for the past 17 years. 400 to 600 mg/day.

38.  Teri Baxter    Tuesday, May 23, 2017

Well put! Wow! Thank you. I can ever seem to find the right word ANYMORE since infected .

39.  Amy    Friday, April 27, 2018

I am at the end stage Lyme. I have tried to stay alive for my son but it has gotten too painful. I tried so hard but cannot do it anymore.

40.  Shawn    Tuesday, May 8, 2018

I'm so sorry to hear your story ( #14 Giovanni )! I can relate to your pain. I myself have spent 17 years in prison for "crimes" fabricated by the local government of my home town in retaliation for causing the removal from the bench of one of their judges that committed crimes that I had reported to the FBI, IRS & the Pa. Supreme Court so I know what its like. I may be able to help you in you civil rights lawsuit as I am a certificated paralegal. I currently have a Federal lawsuit pending in the U.S. Court of Appeals in regards to inhumane prison conditions. You can find me on Facebook under Shawn Murray. I'm not "plugging" facebook, I just don't know how else to tell you to get in touch w/me and maintain some sense of privacy ? Furthermore, I can relate to your pain where Lyme is concerned as my Fiance' Olivia has "stage 3" Lyme & is very, very sick all the time w/the same horrible symptoms as i've read above. She has a fb page "May we March for Lyme" that is very informative. She is also an outspoken Lyme activist whom nearly organized a march in front of the Lincoln Memorial in D.C. until she was stopped by the "shills" of the CDC & IDSA. So i'm personally very much involved w/prison activism & Lyme activism. If you can't find me on fb, my email is: shawnmurray97@ymail.com. Hope to hear from you soon! Till then, take care & stay strong!

41.  CRod    Friday, January 18, 2019

Although Lyme has been so tragic, WE are changing the course of Lyme for ourselves, for fellow and future sufferers, and it IS getting better.

I wish I'd known earlier: that when Dr's were telling me I wasn't 'that' sick, that that was code for, 'and you never will be in our eyes'. I was first bedridden in '93 at 23 yrs old. (infected at 10, now 48F) There are so many others I wish would have understood in my life, I felt the truth would eventually reveal itself and then treatment could begin. Many bouts later, I finally also got multiple Strep B, GBS infections.

Heavy With Pending Doom is the only way to describe how I barely survived on whatever antibiotics I could get. I could write a book about my recent 4 years of zombie survival. For ex, I wrote a Dr ahead about my sx and GBS, and from the moment our appt began, he did Not want me dying on his watch. He said I couldn't be that ill, and when I showed him recent strep tests, he left. Then called the police to claim I physically hit him with the paperwork that metaphorically hurt 'him'. I almost died in jail bc I couldn't take antibiotics.

Nobody suggested Lyme and no one in my life was going to. There are hundreds of thousands of people in the US with Lyme, and I didn't know that I would be more likely to die from it then get a diagnosis. 'Natural Causes' my Dr's told me; I guess how my death certificate would read. It took two Years for it to slightly peak to be ID'd as full on Sepsis and pericardial Effusion (for which treatment I almost was denied, and still was woefully undertreated for) Not Dead yet!

And as bad as this gets, at least I have the knowledge that although each bout has been worse and each recovery less complete, the past few years before my present bout, I lived life so gratefully for the recovery I'd gotten, and plan to Again. This time I have a better chance to recover better and not relapse- at least not as bad. You Too! Money is a problem.

I've gone through my savings while lying here without much to show and my heart goes out to us all. I am humbled that at least I had some to go through. I ran an ad to rent a room to anyone who could fix it up and be ok with my illness, and a woman I only met once saved my life in three short words, "Sounds like Lyme". Not that I didn't suggest it to Dr's, many times, but I believed them when they said it couldn't be.

Another Big thing to know is, you really Need to see an LLMD and get Igenex/quality Lyme testing. I had the bullseye rash as a child=Lyme, but all my AB groveling may have cleared it: Bartonella (and mycoplasma) are what stood out in my tests. A breakthrough, bc by then I'd been experimenting with AB's and didn't know what I was doing. To endure the kind of herxing and time etc investments needed for progress, you have to have as much possible to go on. I've had horrific pain for years requiring narcotics. I was so caught up in how 'fortunate' I had been to be getting 'good' treatment, I wasn't prepared for how difficult it would be to sustain once my health dove badly, due to all the pressure to crack down on opioid treatments.

I thought, 'end of the line' several times bc I could not live w/o the pain relief. I wasn't addicted, but was dependent. It wasn't psychological- it was a scorching infection in multifocused CRPS areas (where medical implants had been, then spread). Also bilateral hip pain/fibromyalgia relieved with arthritis med. In 2009, infection around an IUD had turned my uterus into mush with infection, but nothing showed in tests bc they only look for STD's, not Lyme.

I've been treating Bartonella for 6 months now. It has been rough, even more rough, bc of herx. Today I have a cold, and it pulls me back to the darkest days. But the truth is, I AM getting better. I do not have to take pain meds- I never thought I'd see the day!! Just knowing this is my inspiration, bc I still feel worse rather than better. A few years ago, it wasn't death itself that scared me- it was dying without pain relief. If you can't walk, you can't get an RX. Only once has the hospital given me pain medicine when I was admitted. omg, the hospital ward just made me feel like living in a 1920's horror movie, between the Lyme brain and pain. We need to keep learning from each other, share in the burdens and successes, until this all gets figured out and known as an undisputed truth: This IS Lyme; these are the details, this is how we fight, and these are the outcomes. We will keep Learning until we teach the system. Until everyone knows the tests to get and how to get them. Until treatment becomes cheaper and more reliable because successful paths are made. Until the day where insurance companies can Make $ by offering more expensive plans that include Lyme treatment, And consumers are willing to pay higher premiums to get it, and it becomes standard. Communication through the internet will be a driving force. I thank all the angels who came before me, that I have learned so much from you! Good luck & God Bless!

42.  wrotek    Saturday, March 23, 2019

You put a lot of work into this website. good job

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