Archive for the ‘research’ Category

LD Not in Australia: Here We Go Again

http://www.medicalnewstoday.com/releases/313821.php

A recent article in MNT reports emphatically that due to a study: https://www.mja.com.au/journal/2016/205/9/does-lyme-disease-exist-australia, “Classic” Lyme Disease does Not exist in Australia.  Period.  And, don’t even think about it.

Firstly let’s jut cut through the jargon. No such animal as “Classic Lyme Disease,” exists anywhere in the universe. Blanket statements about Lyme Disease are truly foolish as this is one of the most complex diseases known to man. We are talking about a pleomorphic bacteria that shape shifts into 3 possible forms to evade the immune system and drugs, and is a fungal shedder. The spirochetal form can penetrate any organ in the body including the brain where it can cause symptoms similar to what you find in an Alfred Hitchcock film. It recently has been found in microscopic worms and is associated with dementia and Alzheimer’s.
https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/

This stuff can kill you but before it does, it makes you want to die.  The authors state that Borrelia burgdorferi and the tick that transmits LD, are not found in Australian animals or ticks, yet a quick cursory search shows:

http://www.lymedisease.org.au/about-lyme-disease/myths-surrounding-lyme-disease-in-australia/, that Willis identified the bacteria in Australian ticks in 1995.  Also, Carly and Pope found an Australian strain, Borrelia Queenslandica in 1962. A 1959 study by Mackerras found Borrelia in kangaroos, wallabies and bandicoots, not to mention there is a large number of positively diagnosed LD patients in Australia who have never traveled outside their country. This site also shows that LD is grossly under diagnosed and using estimates based on the US figures that extrapolates cases, approximately 18,000 new cases of LD occur each year, with potentially 378,000 patients in Australia.

http://www.lymedisease.org.au/stats/
Since Australian public health officials do NOT collect statistics on it, the Lyme Disease Association of Australia (LDAA) has collected bi-annual statistics since 2011. An interactive map shows 910 locations with confirmed LD by tick bite location, mainly on the coasts.

If you want good information about LD it seems you have to find it yourself.

The authors also make their bias completely known when they describe the two camps of current thought on persistent LD. In their own words:

  1. The Infectious Diseases Society of America (IDSA), an association of physicians and medical scientists.
  2. The public advocacy group, The International Lyme and Associated Diseases Society (ILADS)  

They purposely describe ILADS as an advocacy group, not a group of medical doctors, researchers, and other qualified, credentialed and legitimate medical professionals.  I have met a fair share of LLMD’s (Lyme literate doctors) who are members of ILADS and they are some of the brightest doctors I have ever had the privilege of knowing.  They might as well have included a picture of wily haired fringe lunatics with raised fists.

Momentary Monologue

I am finding an alarming trend. When I was trained in journalism in the 80’s, we were taught to present facts and let the reader come to his or her own conclusion, unless it was an opinion piece. Everything I currently read has clear bias of the reporter. Just to be clear, in my case, and on this website, I am fighting for patients. The reason for this is clear – they need fighting for. I do not hide my bias but am proud to be on the side of those who are looking at the worldwide literature, research, and are listening to patients who have far better things to do than make up an illness. There must be a counter to the main-stream clap-trap that currently is being peddled about Lyme Disease or MSIDS (multi systemic infectious disease syndrome – or Lyme with friends as research shows few have just Lyme anymore).

This trend of biases is also in the research and medical fields, and is particularly glaring in groups like the CDC, IDSA, and NIH – the folks who are supposed to be protecting the public. They have been charged with protecting the innocent and they have flatly failed. Fueled by patents, conflicts of interest, collusion with research institutions and big pharmaceutical companies these people have completely forgotten their charge.

Back to the matter at hand

The authors then go on to warn of all the false positives in testing for Lyme. Get real. The ELISA test detects only 50-65% of infected patients, and as many state, is no better than a coin toss.  http://www.ilads.org/lyme/lyme-quickfacts.php.  And Dr. Sin Lee in an open Public Comment for the IDSA states, “It is questionable why the [IDSA] insist on using antibody tests to diagnose a bacterial infectious disease, an obvious deviation from the standard practice of clinical microbiology in dealing with Lyme disease which is really a systemic infection with periodic bacteremia.”  http://www.lymestats.org/assets/25_antibody.pdf

Remember now, this isn’t bronchitis, this is a complex illness that can kill you. In fact, from 1999 to 2001, Dr. Martin Atkinson-Barr tested 150 ALS patients for LD and stated,

“Not one patient was found to be negative across all tests. Many were PCR positive. Effective treatment of late stage ALS is possible with aggressive antibiotic therapy that must include Metronidazole. Other researchers have recently reported success in treating early stage ALS with antibiotic therapy.”
https://lymeandals.wordpress.com/item-1-possible-connection-between-als-and-lyme-disease/

According to the CDC you have to be positive on the ELISA before you can test with the Western Blot, a test that 20-30% of acute culture-proven LD patients remain negative on.  Please understand that these tests are made with one spirochete from one strain from one laboratory tick who never saw the outside world, when there are 300 strains and counting of borrelia worldwide and 100 strains and counting in the U.S, with new strains being discovered continually.

Then, the CDC vilifies small labs that specialize in virology and bacteriology and only stand by FDA approved lab monopolies that only report on a few of the bands, ignoring bands that are critical.

Translation: both of these tests suck.

The article then blathers on that to avoid those horrible, nasty false positive test results, Australian physicians should ONLY request tests if there is a well founded clinical suspicion of LD and not in situations of low-pre-test probability. Do you see the circular reasoning here? You are damned if you do and you are damned if you don’t, because after all, LD does not exist in Australia.

They state that a human volunteer was inoculated with B. queenslandica, but without causing disease, so therefore, they state emphatically it is very unlikely that it can induce “classic” LD.  What poor sucker volunteered for that?  And are you honestly going to state that due to the findings of one poor inoculated sucker that it can’t cause disease in others or even that it might not cause disease in this person later?  Wow.  Now, I’ve truly heard it all.

Moving on

They state that “after controvery in the US about chronic LD intensified, patients in Australia began presenting with non-specific symptoms that they related to the putative disorder, such as chronic fatigue, cognitive impairment, myalgias, and arthralgias. These patients were often clustered around a small number of general practitioners who, assessing their symptoms as being consistent with chronic LD, requested laboratory testing. Most tests undertaken in Australian laboratories returned negative results; specimens were then frequently sent to overseas laboratories, often to facilities describing themselves as being specialized for Lyme and associated diseases. Some of these laboratories reported positive results, interpreted by the treating medical practitioner as confirming their clinical diagnosis of chronic LD.”  The article then goes on to blame social media and patient advocacy groups for playing the Pied Piper’s flute and drawing people with Lyme out of the woodwork like Carpenter Ants.

In answer to this – the reason for the patient clustering is that some educated and credentialed M.D’s, general or not, started listening and using their God-given brains. When you are desperately ill, who are you going to see, someone who listens to you and treats you accordingly, or someone who marginalizes you, says it’s all in your head and proceeds to hand you some anti-depressants while your health spirals downward? Duh! Secondly, do you blame very ill patients for finding each other and consoling each other?  You give us no choice.

http://www.abc.net.au/local/stories/2014/05/13/4003802.htm  According to Dr. Hugh Derham, a Perth-based doctor in Australia, Lyme Disease/MSIDS is common but hasn’t been diagnosed because no one is looking for it.  The brightest thing in the article is when someone mentions that ticks could have hitched a ride into Australia with unknowing travelers.  I always chuckle when “authorities” put geographical constraints on ticks and LD.  Until the bird, fox, lizard, mouse, and 100 other reservoirs as well as numerous potential vectors quit crossing state and international boundaries, the potential for LD is everywhere.  Use your brain.  

The good news is the MNT article does state they have finally “discovered” previously unknown pathogens in Australia and when you read the full article in The Medical Journal of Australia, you learn that they mean specifically Babesia as well as a novel Borrelia species in Australian ticks (which they state has not been shown to be pathogenic). Further, they say patients and practitioners believe other pathogens play a role in “Lyme Disease,” such as Babesia, Anaplasma, Bartonella, and Ehrlichia. To which they counter that these microorganisms are not often diagnosed in Australia. More circular reasoning.  Since it isn’t commonly diagnosed, it isn’t there. This argument was used recently to keep children in Arkansas from getting treatment when a local yahoo stated that they had infected ticks but not infected people. https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/

Why don’t they teach logic and critical reasoning in school anymore?

They then repeat the often repeated mantra of antibiotic overuse. I want to ask them one question. Just one.

If they were sick with a deadly pathogen(s), would they want antibiotics?

Again, they make it sound as if Lyme literate physicians (LLMD’s) callously ignore all their medical training and randomly hand antibiotics out like candy. While I can not speak for all LLMD’s as they have their own approaches, my treatment and my husband’s treatment was a pulsed antibiotic regimen using multiple antibiotics in a combined effort for two weeks then taking a break from all antibiotics for two weeks until we were symptom-free for three to four months (we treated this way for 4.5 years).  In my understanding there is little chance for antibiotic resistance when pulsing multiple antibiotics with breaks, and constantly switching up the meds.

The article summarizes by saying that there is no convincing evidence that “classic” LD exists in Australia (to which I agree because there is no such beast as “classic LD”) and that prolonged IV or oral antibiotic therapy is unjustified and unethical and will do more harm than good, and that immediate treatment solutions for these patients are not available.

Well isn’t that lovely.

I say, wait until you or someone you love gets infected. Your tune will change – I promise.

For your reading enjoyment, here is an article about an IDSA Founder, right here in good old Wisconsin,  who used potent IV antibiotics:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/

http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Lyme-like_Illness/Submissions  Very recently, over 1,200 people submitted illness information to the Senate hearing in Australia.  I think we can safely say that Lyme/MSIDS is indeed in Australia.

Rock on Aussie Lyme/MSIDS patients.  We stand with you.

http://restormedicine.com/lyme-disease-in-australia/

http://www.lymedisease.org.au

https://www.facebook.com/LymeDiseaseAustralia

https://rarediseases.org/organizations/sarcoidosis-lyme-disease-support-australia/

MSIDS Patients: Make Cash Help Research

Talk to your doctor and get:

For the Babesia Microti study:

*evidence of a positive diagnosis within the past 10 years
*Preapproval of PLASMA MedResearch
*After pre approval, go to the Quest Diagnostic Lab closest to you for a blood draw of 2     tubes of blood
*Collect $40

For the Lyme study:

*new diagnosis of less than 4-5 weeks
*Preapproval of PLASMA Med Research
*After pre approval, go to the Quest Diagnostic Lab closest to you and give two units of plasma.
*Collect $1,200

For more information, contact:
Lloyd Sherman
Patient Recruitment Manager
P.   561.717.5210
M.  561.962.5065
lloyd@plasmamed.com
www.plasmamed.com

Heartland Virus Ravages Man’s Body

http://www.livescience.com/56674-death-from-heartland-virus.html

Doctors found signs of Heartland Virus in nearly every tissue in a 68 year old Tennessean who died in 2015, according to a new report that has not yet been published in a peer-reviewed journal.

The infected man who was a landscaper first came to the hospital due to pain and a rash on his leg where he suspected a tick bite. He was initially treated with doxycycline, a first line drug for tick borne infections; however, he got worse and testing couldn’t reveal what he was infected with. The patient went into shock, was placed on a ventilator, given blood pressure meds and was put on dialysis for kidney failure. Despite aggressive therapy the patient died.

It wasn’t until the patient died that doctors determined he had Heartland Virus.

Previously scientist have found the virus in bone marrow, blood, lymph nodes and spleen, but in this case it was found in the liver, pancreas, heart, lungs, bowels, kidneys, testes, skin, muscles, and brain. The examined tissues revealed damage but researchers are not sure if this is due to the virus or from an autoimmune response.

The man also suffered from confusion and an altered mental state, making researchers theorize that his symptoms could have been caused by the virus itself.

Dr. Mary-Margaret Fill, an epidemic intelligence officer at the Tennessee Department of Health and lead author of the study states that the virus “can cause much more widespread infection than we knew.” Fill also notes that for the vast majority of cases people will have mild to no symptoms at all but that for some it can spread quickly and be fatal.

There are no current treatments for viruses and the only testing is available through the CDC.

There are things you can do to fight viruses, however:
https://madisonarealymesupportgroup.com/2016/03/28/combating-viruses/. Wisconsin is a hot-bed for Powassan – another virus that can be transmitted through tick bite:
https://madisonarealymesupportgroup.com/2016/02/21/powassan-virus/

Research on Morgellons

Morgellons Disease – Video abstract 116608  Uploaded on Sep 28, 2016
Video abstract of review paper “Morgellons disease: a filamentous borrelial dermatitis” to be published in the International Journal of General Medicine by Middelveen and Stricker.

https://www.dovepress.com/articles.php?article_id=29451
Marianne J Middelveen, Raphael B Stricker

International Lyme and Associated Diseases Society, Bethesda, MD, USA

Morgellons disease: a filamentous borrelial dermatitis

Abstract: Morgellons disease (MD) is a dermopathy characterized by multicolored filaments that lie under, are embedded in, or project from skin. Although MD was initially considered to be a delusional disorder, recent studies have demonstrated that the dermopathy is associated with tickborne infection, that the filaments are composed of keratin and collagen, and that they result from proliferation of keratinocytes and fibroblasts in epithelial tissue. Culture, histopathological and molecular evidence of spirochetal infection associated with MD has been presented in several published studies using a variety of techniques. Spirochetes genetically identified as Borrelia burgdorferi sensu stricto predominate as the infective agent in most of the Morgellons skin specimens studied so far. Other species of Borrelia including Borrelia garinii, Borrelia miyamotoi, and Borrelia hermsii have also been detected in skin specimens taken from MD patients. The optimal treatment for MD remains to be determined.

Morgellons disease – Video abstract: 39017  Published on Jan 8, 2013
Video abstract of original research paper “Characterization and evolution of dermal filaments from patients with Morgellons disease” by Middelveen MJ, Mayne PJ, Kahn DG, et al.

https://www.dovepress.com/characterization-and-evolution-of-dermal-filaments-from-patients-with–peer-reviewed-article-CCID
Marianne J Middelveen,1 Peter J Mayne,1 Douglas G Kahn,2 Raphael B Stricker1

1International Lyme and Associated Diseases Society, Bethesda, MD, USA; 2Department of Pathology, Olive View–UCLA Medical Center, Sylmar, CA, USA

Characterization and evolution of dermal filaments from patients with Morgellons disease

Abstract: Morgellons disease is an emerging skin disease characterized by formation of dermal filaments associated with multisystemic symptoms and tick-borne illness. Some clinicians hypothesize that these often colorful dermal filaments are textile fibers, either self-implanted by patients or accidentally adhering to lesions, and conclude that patients with this disease have delusions of infestation. We present histological observations and electron microscopic imaging from representative Morgellons disease samples revealing that dermal filaments in these cases are keratin and collagen in composition and result from proliferation and activation of keratinocytes and fibroblasts in the epidermis. Spirochetes were detected in the dermatological specimens from our study patients, providing evidence that Morgellons disease is associated with an infectious process.

https://www.dovepress.com/filament-formation-associated-with-spirochetal-infection-a-comparative-peer-reviewed-article-CCID
Marianne J Middelveen, Raphael B Stricker
International Lyme and Associated Diseases Society, Bethesda, MD, USA

Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease

Abstract: Bovine digital dermatitis is an emerging infectious disease that causes lameness, decreased milk production, and weight loss in livestock. Proliferative stages of bovine digital dermatitis demonstrate keratin filament formation in skin above the hooves in affected animals. The multifactorial etiology of digital dermatitis is not well understood, but spirochetes and other coinfecting microorganisms have been implicated in the pathogenesis of this veterinary illness. Morgellons disease is an emerging human dermopathy characterized by the presence of filamentous fibers of undetermined composition, both in lesions and subdermally. While the etiology of Morgellons disease is unknown, there is serological and clinical evidence linking this phenomenon to Lyme borreliosis and coinfecting tick-borne agents. Although the microscopy of Morgellons filaments has been described in the medical literature, the structure and pathogenesis of these fibers is poorly understood. In contrast, most microscopy of digital dermatitis has focused on associated pathogens and histology rather than the morphology of late-stage filamentous fibers. Clinical, laboratory, and microscopic characteristics of these two diseases are compared.

Hope for Southerners

Up until now, the powers that be have pretty much denied the existence of Lyme Disease in the South. A great example of this happened recently when children from Arkansas were denied treatment because the Director of the Infectious Disease Program stated that although they have ticks that transmit LD, there aren’t any recorded cases.  https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/

This illogical ideology is about to change thanks to the work of Kerry Clark, PhD, MPH, Professor of Epidemiology & Environmental Health at the University of North Florida. At the recent Lyme Disease Association (LDA) 17th Annual Conference in St. Paul, MN, Clark presented his work showing that Borrelia burgdorferi sensu lato (Bbsl) DNA has been detected in scores of human patients and dogs from the South, who had no travel history to Lyme endemic regions. Bbsl was isolated in culture from patients from both Florida and Georgia – never before described in scientific literature.

https://www.researchgate.net/publication/292984009_A_divergent_strain_isolated_from_a_resident_of_the_southeastern_United_States_was_identified_by_MLST_analysis_as_Borrelia_bissettii

The take home: Clark is finding strains in the South that the current CDC two-tier testing will never pick up in a thousand years.

https://www.researchgate.net/publication/285584725_Isolation_of_live_Borrelia_burgdorferi_sensu_lato_spirochetes_from_patients_with_undefined_disorders_and_symptoms_not_typical_for_Lyme_diseases

The take home: Clark found live Bbsl (bissettii-like strain) in people from the Southeast who had undefined disorders not typical of LD, and were treated for LD even though they were seronegative, proving that B. bissetti is responsible for worldwide human infection.

He also showed DNA of Bbsl in Lone Star ticks which might be a bridge vector of transmission to humans.

To see Dr. Clark’s work, go to: https://www.researchgate.net/profile/Kerry_Clark/publications

Dr. Clark was the first to report finding LD spirochetes in animals and ticks in South Carolina, as well as in wild lizards in South Carolina and Florida. He has documented the presence of LD Borrelia species, Babesia microti, Anaplasma phagocytophilum, Rickettsia species, and other tick-borne pathogens in wild animals, ticks, dogs, and humans in Florida and other southern states.