https://www.lymedisease.org/shapiro-tbdwg/

If true, Shapiro on TBD Working Group will outrage Lyme community

http://

This 2011 newscast shows Shapiro in typical fashion – deny, deny, deny.  

When asked if Lyme was a national crisis, Shapiro answers, “No.”  

Are you for real?  The numbers are only growing and it’s something like 430,000 NEW cases of Lyme per year.  That’s twice as much as breast cancer and nearly 6 times greater than HIV/AIDS.

He claims Lyme disease is easy to diagnose.

I guess he hasn’t read the memo that Lyme mimics over 300 different diseases, is pleomorphic and polymicrobial, meaning there are numerous other pathogens at play making each case uniquely different, necessitating different medications, as well as the fact current 2-tiered testing misses over half of all cases.

Sure, easy peasy.

He also accuses Lyme literate doctor’s of only diagnosing Lyme disease and not considering other diseases. This is flat-out untrue.  These LLMD’s are TRAINED doctors just like him.  The only difference is they are educated not only on standard conditions but also on the complexity of Lyme/MSIDS and what to look for.

He claims there’s over 30 years showing that long-term antibiotics don’t work and yet he neglects to mention that these studies have numerous inherent flaws including only accepting patients who test positive on 2-tiered testing with the EM rash. These criteria leave out a HUGE subset of patients, which means there is study bias.  He often fails to mention they typically use mono-antibiotic therapy that is not effective for this. These studies  NEVER consider pleomorphism (Bb’s ability to shapeshift) or polymicrobialism (coinfections).  He also must never have read Dr. Waisbren’s (an IDSA founder) book on 51 cases of chronic Lyme & the benefit of long-term antibiotic treatment:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/

Dr. Robert Edleman, pushes the bull’s-eye rash criteria but fails to mention that of the first ever patient group, only a quarter had the rash.  Depending on who’s counting, it ranges from 25%-80%.  Hardly a sure thing:  https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/  While it’s great when patients get it because the EM rash IS diagnostic of Lyme, many, many NEVER get the rash.

Edleman states to wait for the rash to get bigger before treating.  WRONG!  The EM rash is DIAGNOSTIC for Lyme.  Start treatment yesterday!  https://madisonarealymesupportgroup.com/2019/02/21/lyme-disease-dont-wait-for-blood-tests-where-patients-have-bullseye-rash/

Shapiro states there is NO diagnosis for chronic Lyme and that some vast research somewhere indicates they NEVER had Lyme.

Let’s unpack that statement. The reason there is no diagnosis for chronic Lyme is NOT because chronic Lyme doesn’t exist, but because according to Dr. Donta in the documentary “Under Our Skin”, the IDSA pushed the Lyme guidelines group to reach a quick conclusion and while they discussed the acute phase of Lyme, they NEVER got to the chronic phase and entrusted Dr. Gary Wormser to deal with the chronic phase on his own.  He never did and patients have been suffering ever since.

‘Repeat a Lie Often Enough and It Becomes the Truth’

This interview was 8 years ago and Shapiro has learned NOTHING.  NADDA.

Edleman states you need that FDA approved test (CDC 2-tiered testing that misses half or more of all cases)  https://madisonarealymesupportgroup.com/2018/01/16/2-tier-lyme-testing-missed-85-7-of-patients-milford-hospital/and he states only 5% go onto develop chronic symptoms.  WRONG!  This number has been estimated to be 60%:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

Notice that when Mandy from “Under Our Skin,” spoke she mentioned that even with the EM rash, doctors told her Lyme couldn’t do that.  She was dismissed for years.  She also mentioned that she had all sorts of trouble with insurance paying her treatment.  She felt she was treated appropriately through Dr. Jemsek. She is completely well now and was treated by a Lyme literature doctor with long-term antibiotics.

But Shapiro wants to say the reason Mandy and others are better today is placebo effect.
Wow.

Skin Deep: The Battle Over Morgellons

Trailer for the upcoming film, SKIN DEEP The Battle Over Morgellons, about the facts surrounding the contested and misunderstood illness often referred to as fiber disease. This film highlights the personal story of Charles E. Holman Foundation President Cindy Casey and her struggle with Morgellons disease. Also in this film, a Morgellons conference of the suffering is filmed as guest professionals are invited to view the evidence that Morgellons is not a psychosomatic illness. http://www.morgellonsmovie.org/ http://thecehf.org/
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0-10

https://nextdoor.com/events/2954936/?init_source=facebook_share&fbclid=IwAR05xoPFYU-8fD_KV343BtkSFZgaLF42x1pwX_pLh3qkOTW6YILtiqLJN-I  (Sign up here)

Pathology Lecture Lyme disease in Human Brains

Tue, May 21, 6:00 PM – 8:00 PM

Event details

Tuesday May 21st, 6 PM Superior Library all are welcome FREE! This is a lecture on human brain research looking for the Lyme bacteria in Alzheimer’s brains. Several local cases will be discussed. (This is not a Lyme prevention lecture.) The family of bacteria that causes Lyme disease has been known for 100+ years to enter the human brain. Yet no tax dollars have ever been spent to study the effects of Lyme disease in the human brain. We have images of both Borrelia miyamotoi and Borrelia burgdorferi forming biofilms inside amyloid plaques in Alzheimer’s brains.

Please bring your friends for coffee and cookies and a medical discussion on cutting edge research. Lyme disease is not the easily diagnosed and easily treated disease that we have been told about, it is found inside human cells including neurons, and behind the blood brain barrier where blood tests cannot detect it, and the new species of Borrelia are not detected by any tests. For more photos email me at tomgrier@gmail.com Not recommended for young kids to attend. Nothing is being sold or promoted accept new research. Tom Grier

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**Comment**

If you are able to attend this lecture, I highly recommend it.  Tom has done amazing work and has uncovered many important aspects of this disease(s) that mainstream medicine is frankly ignoring.

For more:  https://madisonarealymesupportgroup.com/2019/04/28/lyme-disease-lecture-notes-microbiologist-tom-grier/

https://madisonarealymesupportgroup.com/2016/12/19/microbiologist-tom-grier/

https://madisonarealymesupportgroup.com/2016/08/09/dr-paul-duray-research-fellowship-foundation-some-great-research-being-done-on-lyme-disease/

 

 

https://globallymealliance.org/press-releases/new-study-by-scientists-at-global-lyme-alliance-and-brown-university-estimates-the-number-of-post-treatment-lyme-disease-cases-in-the-u-s/

STAMFORD, CONN (April 24, 2019)—According to a new joint study conducted by scientists at Global Lyme Alliance (GLA) and Brown University, more than two million people in the United States could suffer profound disability from post-treatment Lyme disease syndrome (PTLD) by the year 2020.

The study, published today by BMC Public Health, used advanced mathematical modeling to calculate the total number of patients with PTLD, a disorder which causes 10 to 20% of Lyme disease patients to suffer from severe symptoms long after their antibiotic treatment has ended—even if their initial infection was promptly diagnosed and correctly treated. PTLD can cause a variety of symptoms including incapacitating fatigue, chronic pain and neuro-cognitive impairment. Symptoms are often so severe that normal schedules for work, school, and personal lives are derailed.

Lyme disease has reached epidemic levels in the U.S., with an estimated 427,000 people in the U.S. newly infected every year. With timely diagnosis and antibiotic treatment most patients recover. However, researchers still do not understand why so many people remain sick months and even years after initial antibiotic treatment. Public and private insurance for the most part will not cover costs for treatment, so patients must pay medical expenses out of pocket.

About the research, lead investigator Allison DeLong, M.S., a biostatistician at Brown University’s Center for Statistical Sciences and a member of GLA’s Scientific Advisory Board, said that there were two goals of the study. Her first was to develop a rigorous mathematical framework for estimating the prevalence of PTLD in the U.S. The second was to actually calculate it to provide some projections for 2020.

“To our knowledge, this is the first time such work has been done and we felt it was time to address these deficits,” she said.

To better define the true burden of PTLD, DeLong and fellow authors based their models on U.S. Lyme disease incidence since 1980, including variables such as age, gender, life expectancy, and the estimated treatment failure rate of 10 to 20%.

“Depending on the model used, we calculated that by 2020, there could be between 81,713 to 1,944,189 individuals with PTLD in the U.S.,” said study co-author Mayla Hsu, Ph.D., Director of Research and Science at GLA, the leading 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness.

Dr. Hsu said the massive number of PTLD sufferers should interest health economists studying disease burden in the U.S.

These are substantial numbers of people struggling with chronic illness and disability,” she said. “They and their families are impacted financially, because they are often unable to work or complete their educations, and are forced to bear the medical costs themselves. This study is a vital first step toward understanding the large number of people who are suffering from  PTLD.”

The study’s authors were quick to note however that as more information becomes available about Lyme incidence and the growth rate of the epidemic, new data can be added, leading to ever more precise predictions.

“This framework,” added DeLong, “will be useful now and should grow in accuracy and applicability as more data about PTLD becomes available.”  Added Dr. Hsu: “This is a beginning of a vital investigative process, but by no means the last word. It reinforces the overarching need to greatly expand research that will lead to optimal treatment of these patients.”

To access the paper, click here.


About Global Lyme Alliance
Global Lyme Alliance is the leading 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness. GLA has gained national prominence for funding some of the most urgent and promising research in the field, while expanding education and awareness programs for the general public and physicians. We support those around the globe needing information about tick-borne diseases.


NOTE:  The term post-treatment Lyme disease syndrome (PTLDS) refers specifically to the 10-20% of patients who were diagnosed and treated at the acute stage of their Lyme infection, yet continue to remain sick and symptomatic. Using this term is not intended to exclude anyone suffering from long-term or persistent infection. In context for this research project, it’s critical to start with a well-defined group, such as PTLDS, for study validation purposes. Due to the inaccuracies in Lyme diagnostic testing, at all stages of the disease, it’s nearly impossible to determine the entire population at this point in time. We fully acknowledge that there are more Lyme sufferers outside of the “PTLDS” category, and it’s our goal to find the answers that will help all these patients. The positive outcome of this study is that we now have a starting point to share with the medical and general communities about the substantial number of people who are suffering in the U.S. as a result of Lyme disease.

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**Comment**

I had to chuckle at the disclaimer at the end.  I was just about ready to send them an email until I read it.

The disclaimer reveals a problem with the 10-20% defined as PTLDS.  Unfortunately, the CDC has derived a 10-20% statistic based ONLY on patients who are diagnosed and treated early that go on to develop chronic/persistent symptoms.  This does NOT and should NOT include those of us who took months to years to get an accurate diagnosis and treatment. According to microbiologist Holly Ahern, that group is 30-40% of patients. When you add the two groups together, that’s a whopping 60% that go on to have remaining symptoms.

This detail is important as the 10-20% doesn’t reveal the amplitude of the problem.  And for those vying for research dollars, statistics matter.  

If they come up with 2 million developing chronic symptoms only from the PTLDS group (10-20%), imagine the millions upon millions affected when you count ALL of those with remaining symptoms.

Now we are beginning to get somewhere.

BTW: Newsweek came out with a horrid article and called this the ‘untreatable’ form of Lyme disease.  Rest assured, this CAN BE TREATED, but it is complex and mainstream medicine is woefully unequipped for this plague.  To read my rebuttal to the article:  https://madisonarealymesupportgroup.com/2019/04/29/is-the-sky-truly-going-to-fall-for-patients-with-the-untreatable-form-of-lyme-disease/

Please note that the folks at Global Lyme Alliance and Brown University never state that those suffering with remaining symptoms are hopeless cases that can’t be treated.  The intention of the work is to reveal the magnitude of the suffering.  The Newsweek article pulls that that it can’t be treated from thin air.  I’ve had long-time advocates claim it’s propaganda being used to prepare us for a new Lyme vaccine.  

Please know the Lyme vaccine is riddled with issues and has caused Lyme symptoms in the past:  https://madisonarealymesupportgroup.com/2018/07/22/why-we-care-so-strongly-about-a-potential-lyme-vaccine/

https://madisonarealymesupportgroup.com/2017/07/01/pbs-lyme-vaccine/

Excerpt:  

Did you know that the LYMERIX vaccine caused 640 emergency room visits, 34 life threatening reactions, 77 hospitalizations, 198 disabilities, and 6 deaths? In a vile cesspool of conflicts of interest are university patent holders, drug companies, and the FDA itself as another patent holder. It generated 40 million dollars before it was yanked. (2008, Drymon)
http://www.yourlawyer.com/topics/overview/lymerix One doctor stated that 21 patients developed severe arthritis after receiving the LYMERIX vaccine.
http://www.lymediseaseassociation.org/index.php/about-lyme/controversy/vaccine/261-lymerix-meeting   “Given that Dr. Marks lead the clinical trials for Lymerix’s competitor, the OspA vaccine produced and then abandoned by Aventis Pasteur, his conclusions mean a lot. “In my opinion,” he told FDA officials, there is sufficient evidence that Lymerix is causally related to severe rheumatologic, neurologic, autoimmune, and other adverse events in some individuals. This evidence is such as to warrant a significantly heightened degree of warnings and possible limitations or removal from marketing of Lymerix.”

https://madisonarealymesupportgroup.com/2017/01/26/lyme-vaccine-to-be-tested-on-humans/  The biological mechanism hypothesis was that the outer surface protein A (OspA), which was the antigenic component of the LYMErix vaccine,induced autoimmunity in genetically susceptible individuals, including high levels of autoantibody to OspA in their synovial fluid.

Dr. Stricker states:

Another Lyme OspA Vaccine Whitewash
The meta-analysis by Zhao and colleagues comes to the conclusion that “the OspA vaccine against Lyme disease is safe and its immunogenicity and efficacy have been verified.” The authors arrive at this sunny conclusion by excluding 99.6% of published articles that demonstrate potential problems with the OspA vaccine. Furthermore, the authors ignore peer-reviewed studies, FDA regulatory meetings and legal proceedings that point to major problems with OspA vaccine safety (1-3). This whitewash bodes ill for future Lyme vaccine candidates because it fosters disregard for vaccine safety among Lyme vaccine manufacturers and mistrust among potential Lyme vaccinees.

Source:

M.M. Drymon.  Disguised as the Devil: How Lyme Disease Created Witches and Changed History.  (New York:  With Avenue Press, 2008).

 

 

 

https://www.wral.com/girl-bit-by-blood-sucking-kissing-bug-in-delaware-cdc-confirms/18345076/  (News story in link)

Girl bit by blood-sucking kissing bug in Delaware, CDC confirms

Posted April 24

— A girl was bitten by a kissing bug in Delaware, the CDC confirmed last week.

According to a statement released April 19, the girl was bitten back in July 2018 while she was watching television in her bedroom.

The family contacted the Delaware Division of Public Health and the Delaware Department of Agriculture for help identifying the bug.

According to the CDC, the home where the girl was bitten was an older home located in a heavily wooded area. A window air conditioning unit was located in the bedroom where the bite occurred.

In April 2019, the insect was preliminarily identified as a kissing bug, or Triatoma sanguisuga.

According to the CDC, kissing bugs are blood-sucking insects that feed on animals and humans. Their nickname comes from their tendency to bite faces.

CNN reported that the bugs, found frequently around Arizona, are known to spread Chagas disease, which can lead to death.

“Anybody who is bitten by these bugs should be very conscious of any flu symptoms, high fevers, swelling over the eye,” said Dawn Gouge, an entomologist with the University of Arizona.

The CDC estimates that there are 300,000 cases of Chagas in the U.S., with most of those contracted in other countries. But the family of the girl who was bitten had not traveled outside the country recently, the statement said.

According to the World Health Organization, more than six million people are estimated to be infected globally.

The CDC provided the following tips to avoid the pests:

  • People can prevent kissing bug infestation by placing outdoor lights away from dwellings such as homes, dog kennels, and chicken coops and turning off lights that are not in use.
  • Homeowners should also remove trash, wood, and rock piles from around the home and clear out any bird and animal nests from around the home.

Cracks and gaps should be inspected and sealed, and chimney flues should be tightly closed when they are not in use.

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**Comment**

Another blood-sucking bug we need to be aware of.  For more:  https://www.thebugsquad.com/general/kissing-bug/

http://

The Kissing Bug – The Bug Squad Guide

Normally thought to be a Central American pest, it’s in the Southern United States; however, as seen in this article, its made it’s way around, just like ticks have.

This insect also flies.

Diagnosis of Chagas is made by identification of trypomastigotes in blood by microscopy. Circulating parasite levels decrease rapidly within a few months and are undetectable by most methods during the chronic phase.

Diagnosis of chronic Chagas disease is made by serologic tests for antibody to the parasite. A single test is not sufficiently sensitive and specific to make the diagnosis. For this reason, the standard approach is to apply two or more tests that use different techniques and that detect antibodies to different antigens. Commonly used techniques include enzyme-linked immunosorbent assay (ELISA) and immunofluorescent antibody test (IFA). Careful consideration of the patient’s history to identify possible risks for infection may be helpful.

According to the CDC, treatment is recommended for people diagnosed early in the course of infection (acute phase), babies with congenital infection, and for those with suppressed immune systems. Many patients with chronic infection may also benefit from treatment.

The two drugs used to treat infection with T. cruzi are nifurtimox and benznidazole. Benznidazole is approved by FDA for use in children 2–12 years of age and is available from www.benznidazoletablets.comExternal. Nifurtimox is not currently FDA approved but is currently available under investigational protocols from CDC. Side effects are fairly common with both drugs and tend to be more frequent and more severe with increasing age.

Common side effects of benznidazole treatment include the following:

  • Allergic dermatitis
  • Peripheral neuropathy
  • Anorexia and weight loss
  • Insomnia

The most common side effects of nifurtimox include the following:

  • Anorexia and weight loss
  • Polyneuropathy
  • Nausea
  • Vomiting
  • Headache
  • Dizziness or vertigo

Contraindications for treatment include severe hepatic and/or renal disease. As safety for infants exposed through breastfeeding has not been documented, withholding treatment while breastfeeding is also recommended. For more on treatment:  https://www.cdc.gov/parasites/chagas/health_professionals/tx.html