Archive for the ‘research’ Category

Researchers Predict Spread of Invasive Long-horned Ticks into North America

https://www.thefencepost.com/news/researchers-predict-spread-of-invasive-long-horned-ticks-into-north-america/#.XGWb_4caToM.facebook

Researchers predict spread of invasive long-horned ticks into North America

Kansas State University

MANHATTAN, Kan. — A recently invaded tick species known as the long-horned tick could establish itself in wide swathes of North America — if they are transported accidentally.

This prediction was published in a new study in Nature’s Scientific Reports by Ram Raghavan, assistant professor at the Kansas State University College of Veterinary Medicine, and his international team of collaborators.

“The long-horned tick is also known as the east Asian tick, in Australia as the bush tick and in New Zealand as the cattle tick,” said Raghavan, a spatial epidemiologist. “This species of tick is native to Japan, China, Primorsky Krai region of eastern Russia and Korea; and it is well-established as an invasive species in Australia, New Zealand and on several Pacific Islands.”

In some of these countries, Australia and New Zealand in particular, Raghavan said this tick is implicated in the transmission of theileriosis to cattle — costing several millions of dollars each year — and in other places they are known to transmit severe fever thrombocytopenia virus to humans.

Raghavan pointed out widespread concerns that the tick — Haemaphysalis longicornis — will successfully establish invasive populations in the U.S. and spread broadly from where it has been currently found.

“Our primary focus in this study was to predict where this tick could establish in North America, and to do that as robustly as possible considering all the caveats in spatial distribution modeling,” Raghavan said.

Data for modeling the potential spatial distribution for this tick species was provided by multiple institutions, collected from the species’ native distribution range.

This tick species has an ability to reproduce without males and to spread to new places and establish under rather diverse climatic conditions.

“About 1983, H. longicornis had spread from northwestern New South Wales and/or southeastern Queensland across Australia to the coastal areas near Perth in Western Australia,” said Steve Barker, parasitologist and a leading expert on Australian ticks at the University of Queensland.

“Such an invasion in the U.S. would carry a significant economic burden and potential human suffering, especially since this tick is capable of transmitting a variety of pathogens such as those that cause Lyme disease and others,” said Barker, who is one of 10 co-authors of the article, “Potential Spatial Distribution of the Newly Introduced Long-horned Tick, Haemaphysalis longicornis in North America.”

Among other collaborators are researchers from the Walter Reed Army Institutes of Research, University of Kansas and institutions in Japan, Australia and New Zealand.

Raghavan said the best-fitting spatial distribution models in his research had indicated a broad potential distribution for this species. The researchers’ model accurately predicted all of the areas in which this invaded tick has already been found in the U.S.

“By our model, we have identified vast areas of North America, particularly the southeastern U.S., the West Coast and broad areas of the northwestern U.S., as well as central and southern Mexico, as climatically suitable for establishment of this species,” Raghavan said.

Another concern arises from the ability of these ticks to travel as parasites on different mammals.

“In our opinion, we feel that there is a need for strict inspection and quarantine of cattle, other livestock and pet animals, particularly dogs, about to be transported from the current focus areas of this tick,” Raghavan said. “High levels of interstate movement of livestock and other animals occur each day. Cattle are moved slowly across the nation, stopping at multiple places — potentially dropping off female ticks. The movement of ticks via livestock and other domestic animals is not currently monitored or regulated, so it is only a matter of time, in our opinion, that this species will spread further in North America.” ❖

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**Comment**

https://madisonarealymesupportgroup.com/2018/08/08/an-invasive-new-tick-is-spreading-in-the-u-s/  In Asia, the Long-horned tick is known for transmitting a phlebovirus (related to Heartland Virus) that causes severe fever with thrombocytopenia syndrome (S.F.T.S.), which causes low platelets.  The syndrome has an overall fatality rate of about 15%.  It is also associated with spotted fever rickettsioses, Anaplasma, Ehrlichia, and Borrelia, the causative agent of Lyme Disease in other parts of the world.  It also transmits babesiosis and theileriosis (protozoan similar to malaria) to cattle.

https://madisonarealymesupportgroup.com/2018/09/12/three-surprising-things-i-learned-about-asian-longhorned-ticks-the-tick-guy-tom-mather/  Excerpt below:

three_surprising_4.png

These were larval ticks — 50, 75, 150 – motionless, tightly clumped, seemingly knitted together almost like the overlapping scales on a snake, but tiny. And once we saw a few of these clumps, we started seeing them everywhere. In certain grassy patches there would be one every couple of feet—each of these likely the product of a single female egg batch. I thought,

“this is not a rare tick, at least not here.”

I think we can deduce that this tick WILL spread.  All you have to do is brush by this and you’ve set off a cluster bomb of ticks.

There’s no such thing as a “good” tick.

 

 

 

Medical Stalemate: What Causes Continuing Symptoms After Lyme Treatment?

https://www.lymedisease.org/lyme-stalemate-ahern/

Medical stalemate: what causes continuing symptoms after Lyme treatment?

19 February, 2019

by Holly Ahern, MS, MT (ASCP)

In 2018, I served on a Subcommittee of the Department of Health and Human Services (HHS) Tick Borne Disease Working Group. This was a Federal Advisory Committee, comprised of federal and public members with “diverse disciplines and views pertaining to tick-borne diseases.”

The group was tasked with conducting a review of ongoing research and resulting advances, federal epidemiological and research efforts, and identifying research gaps.

The HHS TBDWG report included recommendations that were delivered to Congress in December. It is a comprehensive review of the state of the science and medicine of tick-borne diseases, and Lyme disease was a major focus.

What follows is a brief overview of what we know, and what we don’t know, about chronic symptoms associated with Lyme disease.

Not just a single clinical entity

There is a need to broaden the scope of the medical definition of “Lyme disease” because it is not a single clinical entity. Only one subgroup of patients, those with “early Lyme disease,” has been clinically characterized.

This subgroup consists of people for whom an active infection with the bacterium Borrelia burgdorferi has been confirmed.  This is based on either a known tick-bite with development of a skin rash called an erythema migrans (EM, which looks like a bull’s-eye but has a clearing in the center of the rash), and/or positive blood test within one month of a known tick bite.

Standard treatment for this form of Lyme disease is a few weeks of an oral antibiotic. If symptoms persist, some patients may be treated with an additional one month of an IV antibiotic.

At least two other subgroups of this disease are recognized but have not yet been fully characterized and defined.

PTLDS is only one subgroup

Although used very broadly to characterize Lyme disease patients with chronic disease symptoms, the term “Post Treatment Lyme Disease Syndrome,” or PTLDS, specifies ONLY a subgroup of Lyme disease patients meeting the following criteria:

(1) Diagnosed early in the infection;

(2) Treated with the standard antibiotic treatment for Lyme disease; and

(3) Remained symptomatic or developed new symptoms such as headaches, fatigue, joint pain or other neurological symptoms impacting quality of life, that persist or increase in severity for at least 6 months post-treatment.

At present, there are no diagnostic tests for this clinical subgroup, and there are no recommended treatments beyond the standard antibiotic treatment.

The CDC has reported that approximately 10–20% of Lyme disease patients develop PTLDS. Meaning they end up with a chronic illness as a result of Lyme disease.

PTLDS specifies only those diagnosed and treated early

It is important to note that PTLDS specifies ONLY those Lyme disease patients who were diagnosed and treated in the first few weeks of infection. It should never be used to characterize patients who were not diagnosed or treated for months to years after the original infection. Yet it often is.

Disabling chronic disease symptoms with Lyme disease are also known to occur when people are not diagnosed early and do not receive prompt antibiotic treatment. These chronically ill patients DO NOT MEET the criteria for PTLDS and therefore represent a third subgroup of patients.

Because there has been little research done to investigate the clinical characteristics of this particular subgroup, there is no scientific way (at least at the moment) to determine the size of this group.

Best estimates based on existing research indicates that this group comprises 30-40% of Lyme disease patients.

There are no diagnostic tests or recommended treatments for this subgroup of patients.

Diagnosis is not straightforward

The diagnosis of Lyme disease is not straightforward, because the “accepted” medical definition of Lyme disease (at present) is restrictive and applies only to early stages of infection. Not every infected person experiences symptoms within the first few days or weeks. After several weeks, the clinical picture of Lyme disease changes.

Lyme disease is more likely to be MISSED as a diagnosis the longer the infection has been present. The more established the infection, the less likely that it will respond to the standard antibiotic treatment.

Why so often misdiagnosed?

Here are some reasons why a physician might not be able to promptly diagnose a case of Lyme disease and antibiotic treatment is delayed:

(1) a classic bull’s-eye rash is not observed – this applies to 90% of Lyme disease cases;

(2) there was no bull’s-eye rash to observe – which according to surveys of Lyme disease patients, occurs 50% of the time;

(3) an antibody-based laboratory test came back falsely negative – which applies to 50% of all Lyme disease cases;

(4) in the absence of a rash or positive blood test, non-specific disease symptoms overlapping those of autoimmune or psychiatric conditions exclude Lyme disease from the differential diagnosis;

(5) involvement of more than one microbe clouds the clinical features of the disease;

(6) the patient’s tick bite was treated with a prophylactic single dose of an antibiotic, which does not prevent infection but does increase the likelihood of falsely negative blood tests.

10-20% of Lyme disease patients who are promptly diagnosed and treated with an antibiotic within the first few weeks of infection, still end up with chronic disease. This is PTLDS.

30-40% of Lyme disease patients who have been infected for weeks to months before getting diagnosed, and THEN treated with an antibiotic, still end up with a chronic disease. This subgroup has no specific label but it has been referred to as “chronic Lyme disease,” or CLD.

60% of Lyme patients end up with chronic symptoms

Combining these two subgroups implies that up to 60% of people with Lyme disease will experience chronic illness as a result of this tick-borne disease.

The CDC estimates that there are over 400,000 new cases of Lyme disease that occur each year. 60% of those new cases will develop chronic disease symptoms. You can do the math to figure out how many people have a chronic illness attributable to Lyme disease. Because the disease is chronic, the numbers grow exponentially each year.

Whether PTLDS and CLD patient subgroups even have Lyme disease remains contested. The disputed nature of this illness has very little to do with whether a person is actually sick. It has everything to do with the lack of a clinically accurate diagnostic test for the Lyme disease bacteria.

Problematic Lyme lab tests

Current laboratory tests detect antibodies in blood raised against the Lyme disease bacteria. If antibody levels are too low, the tests are falsely negative. If the levels are borderline and the antibody bands are faint, the lab tech who has to spot them with his or her eyes might subjectively declare the test negative. If the specific antibodies covered by the tests aren’t produced by the patient (called seronegative Lyme disease), the test will be falsely negative. If the test is ordered too early in the infection, the test will be falsely negative. If the test is ordered too late in the infection, the test will be falsely negative. If the strain of the Lyme disease bacterium is not B. burgdorferi, the test will be falsely negative. If the patient’s disease is not Lyme disease, but instead caused by certain viruses, the test may be falsely positive.

The current lab tests have repeatedly been shown to have a clinical accuracy of less than 50%. Meaning a person is equally likely to have Lyme disease, whether their blood test is positive or negative.

Negative tests are used to deny medical care

Regardless, a negative blood test result is used by health care providers and insurance companies to deny patients access to care. Meaning they will argue that Lyme disease patients should not be offered antibiotics as a treatment option, because if the blood test is negative, there’s “no evidence” that they actually have Lyme disease.

Because this lab test has such a high rate of false negatives, the opposing argument is equally true – there’s “no evidence” that they DON’T have Lyme disease, either.

The most comprehensive review of the science to date supports the hypothesis that chronic symptoms are most likely due to the lingering presence of bacteria or pieces of the bacteria in tissues. The immune system is aware of the infection, but is unable to clear it. The result is chronic inflammation…

… implying that antibiotics would be a helpful treatment for a chronic Lyme disease patient.

The twist is that the Lyme disease bacteria are remarkable microbes that can disrupt a normal immune response and establish long-term colonies in tissues. Once established, the bacteria are indifferent to antibiotics and are antibiotic tolerant

… implying that antibiotics would not be a helpful treatment for a chronic Lyme disease patient.

Medical stalemate

In the absence of a blood test that can accurately identify patients in the different Lyme disease subgroups, this argument will not be resolved soon. That Lyme disease patients with chronic symptoms are left entirely out of this argument is a violation of the basic tenets of medical ethics – patient autonomy and the right to informed consent.

Click here to learn more about the Working Group and its reports

Click here for Lorraine Johnson’s comments to the TBDWG on “Why we should abandon the term PTLDS “

In addition to serving on the Testing and Diagnostics Subcommittee of the HHS TBDWG, Holly Ahern serves on the NYS Tick Borne Disease Working Group convened by Governor Cuomo and is a member of the NYS Senate Task Force on TBD Advisory Group. Ahern is also a professor of microbiology, and the co-founder of the 501-c-3 education and advocacy organization Lyme Action Network. She also serves as the Scientific Advisor for Focus on Lyme advising research on diagnostic tests for tick-borne diseases, which includes collaborators from the Translational Genomics Institute, Arizona State University, Johns Hopkins University, Tulane University, Duke University, and North Carolina State University.

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For more:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

 

 

 

 

How Lyme Evades the Immune System – Video

How Lyme Evades the Immune System

 Approx. 1 Min 30

Chronic Lyme disease complex is the culmination of Lyme disease and it’s co-infections. Treating chronic Lyme disease can be very difficult because of the many ways Borrelia evades the body’s immune system via constant surface antigen shifting (shifting its own genome), biofilm formation, and its ability to travel everywhere in the body, including particularly difficult places to treat.  All of these factors often lead to antibiotic resistance and failed medical treatments.  Finding the correct treatment protocol is crucial to having lasting relief from this debilitating disease.

Study found here:  https://www.scirp.org/Journal/PaperInformation.aspx?PaperID=52890#.VK2lFivF8WI

Chronic Lyme Disease: Persistent Clinical Symptoms Related to Immune Evasion, Antibiotic Resistance and Various Defense Mechanisms of Borrelia burgdorferi

ABSTRACT

There are several factors involved in the ability of Borrelia burgdorferi to retain a persistent infection within a mammalian host. These factors of immune evasion include regulation of membrane proteins, variable epitopes of surface proteins, protection against the immune system through tick saliva, the ability to migrate to regions where it is not exposed to the immune system or antibiotics, invagination or invasion within various cells, pleomorphic forms, and the potential to produce biofilms. The window of conventional treatment for Lyme disease is short and has the potential to display different symptoms depending on the strain of Borrelia bugdorferi. These symptoms are dependent on the localization of Borrelia burgdorferi which correlates to the significance of diagnosing Lyme disease early to prevent such a spread throughout the body. Such complications of Borrelia burgdorferi may demand new clinical treatment discoveries for patient fighting the chronic form.

Published on Nov 11, 2015

Envita is a leading cancer, Lyme disease, and chronic disease Unipathic treatment center in Scottsdale, Arizona. Our goal is to use the best of real time cancer and Lyme disease diagnostics to determine the best integrative cancer and Lyme disease treatments from around the world to help our patients receive a viable 2nd opinion.

Why Mainstream Lyme/MSIDS Research Remains in the Dark Ages

Why Mainstream Lyme/MSIDS Research Remains in the Dark Ages

By Alicia Cashman MS, Lyme patient and advocate

Recently, a study came out by Wormser et al. on the efficacy of a 14-day course of amoxicillin for patients with erythema migrans (EM).  The study purports to be the first clinical study in the U.S. that validates this regimen but states foreign studies have already done so (1).

The most glaring issue with this study is the continuing fixation on the acute stage while continuing to completely ignore treated patients who remain ill.  I refuse to say the words “late stage” as experience has shown “late stage” can happen within hours after tick bite.  Bob Giguere of IGeneX told our support group the story of a little girl who developed facial palsy and lost the ability to walk & talk within 4-6 hours of tick bite (2).  Whether or not you label that escalating case “late stage” or not, the infection was able to cross the blood brain barrier and cause severe symptoms in short order.

There were other numerous problems with Wormser’s study:

  • The small sample size of only 24 patients.
  • The continued use of the “bull’s-eye” rash when only 25-80% get it depending on who’s counting, leaving out a large subset of patients (3). An inconvenient truth is that only a quarter of the first ever patient sample had a rash.
  • Regarding EM rashes, the study ignores evidence assessments and guideline recommendations that state clearance of the rash does not mean infection clearance (4).
  • The continued denial of the pleomorphic (shape-shifting) & polymicrobial (multiple pathogens) nature of this illness (5).  Pleomorphism allows the organism to hide and reemerge later, where coinfection involvement makes cases more severe and harder to treat. 
  • Pleomorphism, polymicrobialism, and coinfections should be factored into any treatment plan.  This is why experienced Lyme literate doctors call this MSIDS – multi systemic infectious disease syndrome – a far better moniker as patients often have much more than Lyme (borrelia) at play.  This also demonstrates why the current CDC monotherapy doesn’t work for many.
  • The lack of lengthy follow-up required due to the plethora of recorded treatment failures in the literature as well as the complete denial of the recommendation to continually treat patients who have not fully recovered until symptom resolution continues to be a glaring problem (2).  Researchers know that if you don’t want to find patients relapsing, then you simply don’t look for them by keeping the follow up period short. This tactic has been used for decades.

Microbiologist Tom Grier has written on the issue of treatment failure for years and states that from the very beginning, treatment failures were seen in nearly every antibiotic study done.  He also states that the longer the patient follow up, the higher the treatment failure (6).  

You would think the totality of these facts would set researchers on a different course yet researchers such as Dr. Gary Wormser seem hell-bent on conducting yet more research with a severely limited patient group, short term treatment and follow up, pushing the EM rash criteria, and ignoring those with persistent symptoms.

MSIDS patient and advocate Carl Tuttle has been working tirelessly to let researchers, the IDSA, the tick-borne disease working group, and politicians know these significant facts by refuting the continuing skewed & faulty research.  He writes these entities personally, and has also started the online petition Calling for a Congressional Investigation of the CDC, IDSA, and ALDF:  https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf  If you’ve always wondered what you can do to affect change, add your name to the over 100,000 people who are refusing to accept the current standard of research and care.  Then, if you have the energy, write these folks yourself.  Tuttle includes all the pertinent information for you to cut and paste the material that will let your voice be heard.

Circling back to the practical and important issue of treatment failure faced by many patients, it’s important to rewind time, and learn the sordid and politically motivated history of the management of Lyme.

Dr. Burrascano, a prominent and experienced doctor who treated Lyme for decades, recently made a must-see video for patient and doctor alike.  Within this short 40 minute video he outlines chronological events that explain the mishandling of this disease as well as the years of treatment trial and error within his own practice utilizing microscopy, a far better method of Borrelia detection.  He debunks much of what is blindly accepted in main-stream medicine, including the extremely biased and faulty science in Wormser’s study.  

Highlights of the video (7):

  • Dr. Burrascano’s office was 10 minutes from Shelter Island where Willy Burgdorfer collected ticks. Patients with mysterious symptoms graced his practice from inception.
  • Early Lyme was described in Europe even as far back as the 1800s as causing dermatological, neurological, rheumatological, & neuropsychiatric problems.  He claims that early history was lost.
  • In the U.S., as far back as 1965, a condition known as ‘Montauk Knee’ was described as well as a circular rash that would clear up more quickly with penicillin.  In 1970 the first paper was published about a 57 year old physician who was infected while grouse hunting in our very own state of Wisconsin in 1968.  Thankfully, the patient presented with EM rash, headache, malaise, and a dull, radiating pain over his right hip and Dr. Rudolf J. Scrimenti, a Milwaukee dermatologist who was familiar with the European literature, effectively used intramuscular penicillin during the acute phase of the illness (8). Forty-eight hours later the patient was symptom free.
  • Polly Murray of Connecticut contacted the CDC about an abnormal amount of sick kids with rashes and joint pain in the early ’70s and the CDC sent epidemiologist and rheumatologist Dr. Allen Steere to determine the cause.  Scrimenti wrote Steere and even went to Yale to warn him of the European studies and that Lyme clusters could exist in the U.S. Despite the warnings, Steere concluded what was occurring in Lyme, Connecticut was nothing more than an unrecognized form of juvenile arthritis (8). Later, Willy Burgdorfer found the cause to be Borrelia burgdorferi (Bb), commonly known as Lyme disease.
  • As early as 1985, Pathologist Dr. Alan McDonald developed a culturing technique that showed spirochetes in the blood.  He proved patients can test negative yet still have active infection as shown in blood culture.  Seronegativity for some reason remains controversial to this day.
  • Some patients under Dr. Steere’s treatment in the 80’s got better but many didn’t, so he arbitrarily divided patients into two groups: Major symptoms: Cardiac, arthritic, Bells palsy and Minor symptoms: everything else.  He claimed that successful treatment was the clearing of major symptoms, but 95% of patients with major symptoms found symptoms to clear on their own without any treatment, demonstrating his treatment theory was completely bogus. All those with “minor” symptoms he labeled post Lyme syndrome – a label which has persisted to this day, but there has never been a description explaining what this syndrome is from an immunological standpoint that applies to patients.

Microbiologist Holly Ahern recently wrote about the arbitrary label “Post Treatment Lyme Disease Syndrome,” or PTLDS, which the CDC estimates to be 10-20% of patients; however, Ahern states this label only truly represents a subgroup of patients who have been diagnosed early, treated with standard short-term antibiotics, and whom remained symptomatic or developed new symptoms. It does not and should not include a third group who were misdiagnosed or undiagnosed beyond the first few weeks of infection. She states estimates based on existing research show this unaccounted for group makes up 30-40% of Lyme disease patients. By combining the PTLDS group with the third group, there are 60% of patients ending up with chronic symptoms, a number that more closely matches my experience as a patient advocate (9).

This is an important point as researchers continue to downplay the aspect of persistent symptoms by using the falsely skewed low percentages.
  • Burrascao worked with dermatologist Dr. Bernard Berger and Pathologist, Dr. Alan McDonald, and they cultured EM biopsies for antibiotic sensitivity studies.  Decades ago they knew amoxicillin worked better than penicillin, doxycycline worked better than tetracycline, and while erythromycin worked in a test tube, it didn’t work well in patients.  Burrascano never ascribed to Steere’s pre and post Lyme categories but rather would treat and then wait a few weeks to culture. All the cultures came back positive.  He learned even way back in the 80’s that these patients had continuing persistent Lyme infection. 
  • He also manipulated drug levels. While some patients in- Burrascano’s in house studies had detectable levels, others required higher doses to achieve the same level.  If you don’t have detectable blood levels of antibiotics, you will not be killing pathogens. The CDC guidelines, be it the 200 mg of daily doxycycline or the 500 mg of amoxicillin given in the Wormser study, are both faulty in that they are a one size approach negating entirely the issue of effective drug blood levels. Burrascano is concerned the CDC is setting patients up for severe chronic Lyme because if pathogens aren’t killed they are left to mutate into something that will become treatment resistant.   
  • While the recent Wormser et al. study used 500 mg of amoxycillin three times a day, Burrascano, decades ago, found patients had more improvement on 1000mg three times a day. When he added 500 mg probenecid three times a day, which increases antibiotic blood levels, they improved even more.  Regarding dosages, he explained about an unpublished study with Stoneybrook where there was a failure rate of 100% of patients taking 300 mg of doxycycline a day for 21 days. Yet, how many people are given this exact treatment today?  He found patients required 400 mg as a starting point with many needing 600 mg.
  • Armed with this intel, he then did clinical studies manipulating treatment time with amoxycillin and probenecid. Due to the varying clinical outcomes he defined treatment success as getting back to pre-illness state for 3 months without relapse.  He found 14 days didn’t do much, with 17% doing well after 1 month, and 66% of males plateauing at 4 months, but hormonally active women not until 6 months. 
  • Regarding cefuroxime, he found that 3 weeks after treatment, patients were still culture positive and complaining of symptoms after 14 days of high doses – a 100% failure rate.  Eventually he discovered that Ceftin did work on patients who failed amoxycillin if the dose was high enough for long enough.
  • Because patients weren’t getting better, he took a week off work, and sat down with his coworkers who created spreadsheets of all his patients.  He found the following variables necessitated longer treatment:
  1. Multiple bites
  2. Active Lyme arthritis with a high sedimentation rate
  3. Heart murmurs
  4. Hormonally active women

He found IV’s give much higher blood levels of drugs than orals, and that the following variables necessitated IV treatment:

  1. Spinal tap shows high inflammation (high protein)
  2. High Sed rate and synovitis (inflammation of synovial membrane)
  3. People sick for more than 1 year
  4. Age over 60
  5. Acute carditis
  6. Immune deficiency
  7. Those who used immunosuppressants
  8. Failed oral treatment

To further demonstrate the polarization of how Lyme is treated, a recent report was published by the U.S. Centers for Disease Control and Prevention with the aim of frightening doctors from using IV therapy at all.  The article published in MMWR, was of five extreme cases with poor outcomes amid thousands who have been treated successfully. Two of the ten authors work for the CDC and are personally involved in updating Lyme guidelines for the IDSA, a group that doesn’t even believe in chronic Lyme.  Furthermore, one of the authors solicited IDSA doctors for evidence of harm while dangling the promise of co-authorship of the report, while not soliciting for any success stories using IV therapy (10).  This sort of partiality is rife in Lyme/MSIDS research.

On the other hand, an IDSA founder from our very own state of Wisconsin wrote a book on 51 cases of chronic Lyme where he often used 6-8 grams of IV antibiotics daily with success.  He first learned of the debilitating nature of Lyme in the late 80’s after a son of a woman dying from ALS suggested his mother’s illness may have started when she developed a severe case of Lyme Disease.  He wrote that many of his colleagues denied chronic Lyme (11).

  • Burrascano found Lyme disease has a 4-week cycle, where every 4 weeks patients experience a symptom flair. Burgdorfer found this in mice studies, and IGeneX found the same thing in urine antigen studies.  Borrelia grow and are active, then become inactive.  Four weeks later they activate.  This has been shown recently in vitro. Think of Bb as a slow relapsing fever.  This nuance is important because antibiotics only kill during the active phase.  You need a minimum of a month to bracket a whole generation cycle.  
  • When patients reach a plateau, he recommends cycling therapy where you discontinue antibiotics until symptoms return.  Then, return to full treatment until symptoms are gone. He states that many patients become symptom free after 4 of these cycles.  He used this on himself with success.
  • Burrascano found 3 other physicians doing the exact same thing with patients. This approached worked for all of them despite the different geographical areas they were in.
  • The government came up with a gold stain for detecting Bb, and found Bb excreted bioproducts and an S layer (slime to create a biofilm) even in the dormant phase. Their work even then showed infected animals had gold stained spirochetes in the following areas: bladder, brain, blood, heart, liver, spleen, urine, tears, and in ticks.
  • The government, in conjunction with Burrascano, conducted studies on 73 chronically ill Lyme patients.  Bb was found in 48 of 50 samples of tears, showing that 53% still had living Borrelia antigens that could be seen on the gold stain. 
  • They also found if you tested patients who still had symptoms, and then took a couple weeks break for treatment, 100% still were positive for Lyme (living organisms) by gold stain.  The NIH abruptly stopped funding of gold stain, made them close the whole thing down, and never asked front-line Lyme docs for specimens again.
  • Burrascano states that in those early days they didn’t know anything about coinfections but patients did well on the Lyme-only treatment at that time; however, the patients that did show involvement were the ones who appeared chronically infected. He found if patients were treated early and hard for Lyme the coinfections weren’t a problem for most.
  • Burrascano then discusses the importance of proper exercise for Lyme patients, and that without exercise, patients don’t recover.  The goal of exercise is to increase T-cells, so exercise cannot be too strenuous or too often.  He recommends light exercise making sure to give enough time in between sessions for the body to recover.  It is also important to get good sleep, and to rest as needed.
  • He gave the story of how Dr. McDonald presented his culture findings (direct testing) at a meeting of the NY State medical society where there were many detractors from Yale & Stoneybrook who didn’t want their patented serological tests to be usurped. They accused him of falsifying his results.  Dr. McDonald then went on to prove conclusively it was Lyme by morphology, silver staining, monoclonal antibodies staining, DNA PCR and finally electron microscopy.  Frustrated, he quit the field and moved to Texas leaving all his old files in Burrascano’s basement until twenty years went by and he became interested again due to Alzheimer’s research & picked up his old files. 

There has been an ongoing record of suppression of microscopy for Lyme.  In an interview with now retired professor of microbiology Morten Laane, the facts come rolling out on how he was fired, his lab was closed down, and his published article disappeared without a trace after presenting his findings at a scientific conference on how microscopy showed spirochetes as well as other organisms like Babesia in a number of patients (12).  Laane is far from alone.  Dr. Sin Hang Lee has even filed a $57.1 million lawsuit against the CDC for suppressing direct detection tests, and for employing ‘Lysenkoism,’ a term used for a Russian political campaign using bogus science to suppress true biological and medical sciences and to punish scientists and doctors who don’t follow Party Line (13).

  • Burrascano connected McDonald with Dr. Eva Sapi to develop a culture technique based on McDonald’s 1985 test.  Advanced Lab contracted with Sapi to develop a commercial test using human specimens instead of lab specimens, and they went on to perform over 8,000 successful cultures of which published studies showed the test was 92% sensitive, and 100% specific.  Advanced labs closed but sold the test to IGeneX & it is currently in the process of getting approval.

Dr. Burrascano’s timely and detailed video reveals clearly why many remain ill.  There are stake holders who are purposely using their power to deny thousands if not millions proper diagnosis and treatment for a disease that is over 40 years old.  There are nuances to treating Lyme that researchers and therefore doctors are still not taking into account, which means doctors are utilizing flawed and biased studies from the Dark Ages in treating patients.  Extremely ill patients are left to suffer.

Most researchers continue to fixate on the acute phase, ignore published animal studies, international studies, the advice and experience of  Lyme doctors trained by ILADS, and purposely suppress much better testing.

It is imperative that we continue to educate ourselves and others, so we do not fall prey to ancient perceptions of a disease that has become a very real pandemic that shows no signs of slowing down.

Medicine fails when it quits listening. 

References:  

 1.  Wormser GP, Brady KC, Cho, MS, Scavarda CA, McKenna D.  (2019) Efficacy of a 14-day course of amoxicillin for patients with erythema migraines.  Diagnostic Microbiology and Infectious Disease.  https://doi.org/10.1016/j.diagmicrobio.2019.01.003

2.   IGeneX presentation to the Madison Lyme Support Group.  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

3.  Johnson, Lorraine.  “How Many of Those With Lyme disease Have the Rash?  Estimates range from 27-80%.” lymedisease.org, 10 April 2014, https://www.lymedisease.org/lymepolicywonk-how-many-of-those-with-lyme-disease-have-the-rash-estimates-range-from-27-80-2/.  Accessed 12 February, 2019.

4.  Cameron, DJ, Johnson LB, Maloney, EL.  (2014)  Evidence Assessments and Guideline Recommendations in Lyme disease:  the Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease.  Expert Review of Anti-infective Therapy.  https://doi.org/10.1586/14787210.2014.940900

5.  Garg K, Merilainen L, Franz O, Pirttinen H, Quevedo-Diaz M, Croucher S, Gilbert L. (2018) Evaluating Polymicrobial Immune Responses in Patients Suffering From Tick-borne Diseases.  Scientific Reports.  doi: 10.1038/s41598-018-34393-9  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6206025/

6.  Grier, Tom.  “Chronic Lyme Post-mortem Study Needed.”  madisonarealymesupportgroup.com, 13 April, 2018, https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/. Accessed 12 February, 2019.  

7.  Burrascano, Joseph.  “The History of Lyme Disease.”  ILADS.org, www.ilads.org/dr-burrascano-happy-holidays/?.  Accessed 21 February, 2019.

8.  Kocurek, J.  “How Lyme Got a Bad Rap – Lyme, Connecticut, That is.”  publichealthalert.org.  1 August 2006, https://www.publichealthalert.org/how-lyme-got-a-bad-rap—lyme-connecticut-that-is.html.  Accessed 12 February, 2019.

9. Ahern, Holly.  “Medical Stalemate:  What Causes Continuing Symptoms After Lyme Treatment?”   lymedisease.org.  19 February, 2019, https://www.lymedisease.org/lyme-stalemate-ahern/.  Accessed 25 February, 2019. 

10. Hughes, Claire.  “Report on Dangers of Antibiotic Use For Lyme Disease Sparks Controversy.”  www.timesunion.com June 20, 2017  https://www.timesunion.com/news/article/Report-on-dangers-of-antibiotic-treatments-for-11231166.php  Accessed 21 February, 2019.

11. Waisbren, Burton.  Treatment of Chronic Lyme Disease:  51 Case Reports and Essays in Their Regard.  (California:  BioMed Publishing Group, 2011).

12. Kraaijeveld, Huib.  “Interview With Professor Laane About the Suprression of Microscopy for Lyme Diagnostics.” https://on-lyme.org/en/, 9 December, 2017,  on-lyme.org/en/sufferers/lyme-stories/item/276-interview-with-professor-laane-about-the-suppression-of-microscopy-for-lyme-diagnostics  Accessed 21 February, 2019.

13. Milford Molecular Diagnostics.  “$57.1 Million Lyme Disease Lawsuit Filed Against CDC.”  Milford Molecular Diagnostics Press Release,  15 May, 2018.  http://www.dnalymetest.com/images/FINAL_-_Published_CDC_Lawsuit_News_Release_-_Nat_l_Version.pdf.  Accessed 21 February, 2019.

Diagnosis & Treatment of Lyme Carditis

Diagnosis and Treatment of Lyme Carditis

Journal of the American College of Cardiology

JACC Review Topic of the Week
Cynthia Yeung and Adrian Baranchuk

Abstract

The incidence of Lyme disease, a tick-borne bacterial infection, is dramatically increasing in North America. The diagnosis of Lyme carditis (LC), an early disseminated manifestation of Lyme disease, has important implications for patient management and preventing further extracutaneous complications. High-degree atrioventricular block is the most common presentation of LC, and usually resolves with antibiotic therapy. A systematic approach to the diagnosis of LC in patients with high-degree atrioventricular block will facilitate the identification of this usually transient condition, thus preventing unnecessary implantation of permanent pacemakers in otherwise healthy young individuals.

__________________

**Comment**

Heart issues with Lyme/MSIDS can cause death.  I would argue that it is not solely an early disseminated manifestation and due to length of illness and involvement of other pathogens, I would also argue against the statement that antibiotic therapy usually resolves it.  At this point nobody’s keeping score of the myriad of patients flying under the radar due to poor testing and misdiagnosis not only for Lyme but for carditis due to Lyme:  https://madisonarealymesupportgroup.com/2018/09/17/lyme-carditis-heart-block-other-complications-of-ld/  In this link CDC expert Dr. Forrester comments that 4-10% of Lyme patients get carditis.  If we take the CDC’s estimate that 300,000 people contract Lyme each year, that’s 12,000 –  30,000 with Lyme carditis.  

Does that sound rare to you?

In contrast, remember the media bliz on Zika? (Mosquitoes here can’t even carry it)

https://madisonarealymesupportgroup.com/2018/06/03/heart-problems-tick-borne-disease/  There are many tick borne illnesses besides Lyme that can cause carditis. An Ontario heart specialist is warning doctors to look for it as numerous people with heart symptoms were admitted to the ER two to three times before anyone even considered it. He also states many don’t get the bullseye rash or notice vague symptoms of fever and muscle aches.

This research shows natural autoantibodies being present in the pericardial fluid with significant correlation of mycoplasma, Lyme, and chlamydia antibodies in patients with heart disease:  https://madisonarealymesupportgroup.com/2018/04/04/correlation-of-natural-autoantibodies-heart-disease-related-antibacterial-antibodies-in-pericardial-fluid-mycoplasma-bb-chlamydia/

This research is linking Ticks to heart disease:  https://madisonarealymesupportgroup.com/2018/07/02/new-uva-study-tentatively-links-ticks-to-heart-disease/

https://madisonarealymesupportgroup.com/2018/07/09/with-unexpected-death-autopsies-should-look-for-lyme-carditis/  Excerpt:  “Lyme expert Dr. Daniel Cameron has done a nice job of summarizing five cases in a blog. http://danielcameronmd.com/autopsy-study-reviews-cases-due-to-sudden-cardiac-death-from-lyme-disease/
Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. (March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract
Excerpt:

Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”

THERE IS A WORLD OF DIFFERENCE BETWEEN SOMETHING BEING RARELY IDENTIFIED AND SOMETHING BEING RARE.

https://madisonarealymesupportgroup.com/2018/08/14/vermont-resident-dies-of-rare-lyme-disease-complication-that-isnt-rare/

https://madisonarealymesupportgroup.com/2018/07/09/with-unexpected-death-autopsies-should-look-for-lyme-carditis/

For doctors willing to learn:  https://www.lymecme.info   In this link is a FREE CME course on Lyme Carditis:  Lyme Carditis, More Than Skipped Beats.

Dr. Maloney began providing accredited continuing medical education courses on Lyme disease for physicians in 2007 and continues to do so. She has also developed similar education for nurses and mental health providers. She has published several papers in peer-reviewed medical journals and is frequently invited to speak to medical professionals across the US. She has served as a consultant to private organizations and government agencies in the US and Canada. In February 2018 she was selected to serve on the Pathogenesis, Transmission and Treatment subcommittee of the federally mandated Tick-borne Disease Working Group. Additionally, she recently accepted an invitation to serve on a peer review committee for the Canadian Institutes of Health Research. 

Dr. Betty will be at the upcoming Wisconsin Lyme Conference:  https://madisonarealymesupportgroup.com/wp-content/uploads/2019/02/at_a_glance-february_2019.pdf