Archive for the ‘research’ Category

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.

Category:

Activism, Lyme, research, Treatment

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.

Category:

Activism, Lyme, research, Testing, Treatment

Diagnosis & Treatment of Lyme Carditis

Diagnosis and Treatment of Lyme Carditis

Journal of the American College of Cardiology

Volume 73, Issue 6, February 2019DOI: 10.1016/j.jacc.2018.11.035

PDF Article
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

 

 

Category:

Heart Issues, Lyme, research, Treatment

Serology Test for Lyme Virtually Worthless

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24192106?cs_tk=As2-

Diagnostic Tests for Lyme Disease

FEB 19, 2019 — 

Wormser, Steere and Molins from the CDC are looking to promote antibody tests for Lyme disease while everyone knows these tests are virtually useless for 4-6 weeks after a tick bite and too restrictive thereafter. These two con artists need to retire.

——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, brett.giroir@hhs.gov
Cc: (79 Undisclosed recipients)
Date: February 18, 2019 at 11:11 AM
Subject: Diagnostic Tests for Lyme Disease

To: the Tick Borne Disease Working Group and ADM Brett P. Giroir, M.D., Assistant Secretary for Health,

Per the link below, Dr. Allen Steere filed a patent in 2013 for yet more antibody detection tests for Lyme disease: (Application #20150219646)

Compositions and Methods for the Detection of Bacterial Infections Associated with Lyme Disease
https://patents.justia.com/patent/20150219646

Faulty/misleading antibody tests are the root cause of unimaginable pain and suffering as we are all aware of Dr. Neil Spector’s need for a heart transplant after his antibody tests for Lyme were repeatedly negative. Lives are being ruined through false negative Lyme disease tests results.

Serology cannot be used to gauge treatment failure or success which is ideal for concealing chronic infection while perpetuating the dogma/racketeering scheme downplaying the severity of Lyme.

The following letter was forwarded to the Editors of multiple journals to warn of any future papers promoting antibody detection of Borrelia infection. It is time to fast track direct detection methods for all species of Borrelia in all stages of disease. Lyme has become a public health disaster under the direction of the US Centers for Disease Control.

Letter to the Editors:

———- Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To:editor.cmo@clinicalmedicaljournals.com,clinmicrobiol@microbiologyinsights.com,in3011@poh.osaka-med.ac.jp,volker.kroemker@hs-hannover.de,udai.singh@uscmed.sc.edu,rschooley@ucsd.edu
Date: February 18, 2019 at 7:49 AM
Subject: Diagnostic Tests for Lyme Disease
JAMA

Clinical Infectious Diseases

Clinical Microbiology

To the Editors,

Before Wormser, Steere and Molins (from the CDC) publish any of their promotional papers in your Journal regarding tests for Borrelia infection I would like to point out the following paper recently acknowledging that current antibody tests are inadequate for the management of Lyme disease.

Direct Diagnostic Tests for Lyme Disease

Clinical Infectious Diseases, ciy614, https://doi.org/10.1093/cid/ciy614

Published: 11 October 2018 (Coauthored by Dr. Paul Mead of the CDC)

Excerpt:

“… serologic tests cannot distinguish active infection, past infection, or reinfection. Reliable direct-detection methods for active B. burgdorferi infection have been lacking in the past but are needed and appear achievable.”

_____________________________

Failure to include this reference in any manuscript involving serology for the detection of Borrelia would be misleading the reader and may tarnish the peer-review process at your journal.

Sincerely,

Carl Tuttle

Hudson, NH USA

_________________________
**Comment**
Keep in mind there is a long & sordid history of serology testing for Lyme:  https://madisonarealymesupportgroup.com/2018/04/03/cdc-deliberately-avoids-direct-detection-testing-methods-for-ld/  Excerpt:

It would appear that there has been a deliberate avoidance of direct detection methods and it is believed that these efforts are to insure that the current thirty year dogma remain intact.

We have a dire need to develop rapid detection methods for a serious growing health threat which has the ability to disable its victim as described in the attached letter addressed to the previous Director of the CDC. (Please see attachment in link)

I would like to point out that employees of the U.S. Centers for Disease Control hold patents on metabolomics (Lyme tests).

CDC Employee Patent:https://www.google.com/patents/EP2805168A1?cl=en

For nearly four decades now the only FDA approved test for Lyme disease is the indirect two-tiered antibody test. Direct detection methods to identify the causative agent responsible for the disease have been avoided, criticized and shelved.

https://madisonarealymesupportgroup.com/2018/12/16/laboratory-testing-for-lyme-disease/  Direct detection laboratory testing (DNA/PCR Sequencing) is used for many infections (Ebola (1), Zika (2), Bartonella (3) etc.) but not Lyme disease.

More on testing:  https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/

https://madisonarealymesupportgroup.com/2018/10/13/direct-test-for-ld-carl-tuttle-chews-up-cdc-spits-them-out/

https://madisonarealymesupportgroup.com/2017/12/13/suppression-of-microscopy-for-lyme-diagnostics-professor-laane/  Excerpt:

After publishing the 2013 article ‘A simple method for the detection of live Borrelia spirochetes in human blood using classical microscopy techniques’, professor Laane was invited to give a lecture at the 2014 Norvect conference in Oslo. An English patient saved the pdf, so you can still read it, via the link provided.

I was present at that conference and still remember how nervous he was. The reason was that several medical professors complained to his university. He was threatened with losing his job, if he would speak at the conference.

In fact, he did not literally speak – as you can see in the movie below – but used performing arts to show the slides of the spirochetes. Professor Laane was fired anyway and his laboratory was closed down.

Category:

Activism, Lyme, research, Testing

Germs in Your Gut Are Talking to Your Brain. Scientists Want to Know What They’re Saying.

https://www.nytimes.com/2019/01/28/health/microbiome-brain-behavior-dementia.html?smid=fb-nytimes&smtyp=cur

The body’s microbial community may influence the brain and behavior, perhaps even playing a role in dementia, autism and other disorders.

Carl Zimmer

By Carl Zimmer

Credit Sean McSorley

In 2014 John Cryan, a professor at University College Cork in Ireland, attended a meeting in California about Alzheimer’s disease. He wasn’t an expert on dementia. Instead, he studied the microbiome, the trillions of microbes inside the healthy human body.

Dr. Cryan and other scientists were beginning to find hints that these microbes could influence the brain and behavior. Perhaps, he told the scientific gathering, the microbiome has a role in the development of Alzheimer’s disease.

The idea was not well received.

“I’ve never given a talk to so many people who didn’t believe what I was saying,” Dr. Cryan recalled.

A lot has changed since then: Research continues to turn up remarkable links between the microbiome and the brain. Scientists are finding evidence that microbiome may play a role not just in Alzheimer’s disease, but Parkinson’s disease, depression, schizophrenia, autism and other conditions.

For some neuroscientists, new studies have changed the way they think about the brain.

One of the skeptics at that Alzheimer’s meeting was Sangram Sisodia, a neurobiologist at the University of Chicago. He wasn’t swayed by Dr. Cryan’s talk, but later he decided to put the idea to a simple test.

“It was just on a lark,” said Dr. Sisodia. “We had no idea how it would turn out.”

He and his colleagues gave antibiotics to mice prone to develop a version of Alzheimer’s disease, in order to kill off much of the gut bacteria in the mice. Later, when the scientists inspected the animals’ brains, they found far fewer of the protein clumps linked to dementia.

Just a little disruption of the microbiome was enough to produce this effect. Young mice given antibiotics for a week had fewer clumps in their brains when they grew old, too.

“I never imagined it would be such a striking result,” Dr. Sisodia said. “For someone with a background in molecular biology and neuroscience, this is like going into outer space.”

Following a string of similar experiments, he now suspects that just a few species in the gut — perhaps even one — influence the course of Alzheimer’s disease, perhaps by releasing chemical that alters how immune cells work in the brain.

He hasn’t found those microbes, let alone that chemical. But “there’s something’s in there,” he said. “And we have to figure out what it is.”

Scientists have long known that microbes live inside us. In 1683, the Dutch scientist Antonie van Leeuwenhoek put plaque from his teeth under a microscope and discovered tiny creatures swimming about.

But the microbiome has stubbornly resisted scientific discovery. For generations, microbiologists only studied the species that they could grow in the lab. Most of our interior occupants can’t survive in petri dishes.

In the early 2000s, however, the science of the microbiome took a sudden leap forward when researchers figured out how to sequence DNA from these microbes. Researchers initially used this new technology to examine how the microbiome influences parts of our bodies rife with bacteria, such as the gut and the skin.

Few of them gave much thought to the brain — there didn’t seem to be much point. The brain is shielded from microbial invasion by the so-called blood-brain barrier. Normally, only small molecules pass through.

“As recently as 2011, it was considered crazy to look for associations between the microbiome and behavior,” said Rob Knight, a microbiologist at the University of California, San Diego.

He and his colleagues discovered some of the earliest hints of these links. Investigators took stool from mice with a genetic mutation that caused them to eat a lot and put on weight. They transferred the stool to mice that had been raised germ-free — that is, entirely without gut microbiomes — since birth.

After receiving this so-called fecal transplant, the germ-free mice got hungry, too, and put on weight.

Altering appetite isn’t the only thing that the microbiome can do to the brain, it turns out. Dr. Cryan and his colleagues, for example, have found that mice without microbiomes become loners, preferring to stay away from fellow rodents.

The scientists eventually discovered changes in the brains of these antisocial mice. One region, called the amygdala, is important for processing social emotions. In germ-free mice, the neurons in the amygdala make unusual sets of proteins, changing the connections they make with other cells.

Studies of humans revealed some surprising patterns, too. Children with autism have unusual patterns of microbial species in their stool. Differences in the gut bacteria of people with a host of other brain-based conditions also have been reported.

But none of these associations proves cause and effect. Finding an unusual microbiome in people with Alzheimer’s doesn’t mean that the bacteria drive the disease. It could be the reverse: People with Alzheimer’s disease often change their eating habits, for example, and that switch might favor different species of gut microbes.

Fecal transplants can help pin down these links. In his research on Alzheimer’s, Dr. Sisodia and his colleagues transferred stool from ordinary mice into the mice they had treated with antibiotics. Once their microbiomes were restored, the antibiotic-treated mice started developing protein clumps again.

“We’re extremely confident that it’s the bacteria that’s driving this,” he said.

Other researchers have taken these experiments a step further by using human fecal transplants.

If you hold a mouse by its tail, it normally wriggles in an effort to escape. If you give it a fecal transplant from humans with major depression, you get a completely different result: The mice give up sooner, simply hanging motionless.

As intriguing as this sort of research can be, it has a major limitation. Because researchers are transferring hundreds of bacterial species at once, the experiments can’t reveal which in particular are responsible for changing the brain.

Now researchers are pinpointing individual strains that seem to have an effect.

To study autism, Dr. Mauro Costa-Mattioli and his colleagues at the Baylor College of Medicine in Houston investigated different kinds of mice, each of which display some symptoms of autism. A mutation in a gene called SHANK3 can cause mice to groom themselves repetitively and avoid contact with other mice, for example.

In another mouse strain, Dr. Costa-Mattioli found that feeding mothers a high-fat diet makes it more likely their pups will behave this way.

When the researchers investigated the microbiomes of these mice, they found the animals lacked a common species called Lactobacillus reuteri. When they added a strain of that bacteria to the diet, the animals became social again.

Dr. Costa-Mattioli found evidence that L. reuteri releases compounds that send a signal to nerve endings in the intestines. The vagus nerve sends these signals from the gut to the brain, where they alter production of a hormone called oxytocin that promotes social bonds.

Other microbial species also send signals along the vagus nerve, it turns out. Still others communicate with the brain via the bloodstream.

It’s likely that this influence begins before birth, as a pregnant mother’s microbiome releases molecules that make their way into the fetal brain.

Mothers seed their babies with microbes during childbirth and breast feeding. During the first few years of life, both the brain and the microbiome rapidly mature.

To understand the microbiome’s influence on the developing brain, Rebecca Knickmeyer, a neuroscientist at Michigan State University, is studying fMRI scans of infants.

In her first study, published in January, she focused on the amygdala, the emotion-processing region of the brain that Dr. Cryan and others have found to be altered in germ-free mice.

Dr. Knickmeyer and her colleagues measured the strength of the connections between the amygdala and other regions of the brain. Babies with a lower diversity of species in their guts have stronger connections, the researchers found.

Does that mean a low-diversity microbiome makes babies more fearful of others? It’s not possible to say yet — but Dr. Knickmeyer hopes to find out by running more studies on babies.

Credit Sean McSorley

As researchers better understand how the microbiome influences the brain, they hope doctors will be able to use it to treat psychiatric and neurological conditions.

It’s possible they’ve been doing it for a long time — without knowing.

In the early 1900s, neurologists found that putting people with epilepsy on a diet low in carbohydrates and high in protein and fat sometimes reduced their seizures.

Epileptic mice experience the same protection from a so-called ketogenic diet. But no one could say why. Elaine Hsiao, a microbiologist at the University of California, Los Angeles, suspected that the microbiome was the reason.

To test the microbiome’s importance, Dr. Hsiao and her colleagues raised mice free of microbes. When they put the germ-free epileptic mice on a ketogenic diet, they found that the animals got no protection from seizures.

But if they gave the germ-free animals stool from mice on a ketogenic diet, seizures were reduced.

Dr. Hsiao found that two types of gut bacteria in particular thrive in mice on a ketogenic diet. They may provide their hosts with building blocks for neurotransmitters that put a brake on electrical activity in the brain.

It’s conceivable that people with epilepsy wouldn’t need to go on a ketogenic diet to get its benefits — one day, they may just take a pill containing the bacteria that do well on the diet.

Sarkis Mazmanian, a microbiologist at Caltech, and his colleagues have identified a single strain of bacteria that triggers symptoms of Parkinson’s disease in mice. He has started a company that is testing a compound that may block signals that the microbe sends to the vagus nerve.

Dr. Mazmanian and other researchers now must manage a tricky balancing act. On one hand, their experiments have proven remarkably encouraging; on the other, scientists don’t want to encourage the notion that microbiome-based cures for diseases like Parkinson’s are around the corner.

That’s not easy when people can buy probiotics without a prescription, and when some companies are willing to use preliminary research to peddle microbes to treat conditions like depression.

“The science can get mixed up with what the pseudoscientists are doing,” said Dr. Hsiao.

Dr. Costa-Mattioli hopes that L. reuteri some day will help some people with autism, but he warns parents against treating their children with store-bought probiotics. Some strains of L. reuteri alter the behavior of mice, he’s found, and others don’t.

Dr. Costa-Mattioli and his colleagues are still searching for the most effective strain and figuring out the right dose to try on people.

“You want to go into a clinical trial with the best weapon, and I’m not sure we have it,” he said.

Katarzyna B. Hooks, a computational biologist at the University of Bordeaux in France, warned that studies like Dr. Costa-Mattioli’s are still unusual. Most of these findings come from research with fecal transplants or germ-free mice — experiments in which it’s especially hard to pinpoint the causes of changes in behavior.

“We have the edges of the puzzle, and we’re now trying to figure out what’s in the picture itself,” she said.

 

 

 

 

 

Category:

Activism, Autism, diet and nutrition, Gut Health, research, Supplements, Testing, Treatment