Archive for the ‘Testing’ Category

Lyme Wars – Part 2 Kyra Overcomes Chronic Lyme Diagnosis

http://www.nbcnewyork.com/on-air/as-seen-on/Part-II-Child-Makes-Recovery-After-Chronic-Lyme_New-York-452896893.html(News video here)  Published on Oct 24, 2017

Kyra Lerner tells her story of struggle and recovery after contracting chronic Lyme, a controversial diagnosis linked to Lyme disease-carrying ticks. Kyra’s story is the second in our five-part investigative series. Natalie Pasquarella reports.

For more:  https://madisonarealymesupportgroup.com/2017/10/24/lyme-wars-part-1-julias-story/

https://madisonarealymesupportgroup.com/2017/10/24/the-lyme-wars-faces-of-the-health-crisis-a-digital-documentary/

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**Comment**

Lots of great info presented in this story – particularly the polarization of medicine and the fact that if Kyra’s parents would have followed the paradigm of the Infectious Diseases Society of America (IDSA), where they espouse essentially 21 days of doxycycline to be curative in all cases, she would be sicker than a dog with no hope.  Thankfully, she and thousands of others have followed the paradigm of the International Lyme and Associated Diseases Society (ILADS) who believe Lyme is pleomorphic and persistent, requiring much more than 21 days of doxycycline as well as the fact there is often coinfection involvement, requiring different drugs for far longer than a month.  This group also believes that IV treatments can be quite helpful for a subset of patients despite the government’s recent attempt to stop IV therapy for Lyme/MSIDS:  https://madisonarealymesupportgroup.com/2017/06/21/ilads-rebuttal-to-mmwr-article/

https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/

For a great article explaining the tug of war:  TheCaseforthePersistenceofLymeDiseaseAfterAntibioticTherapy  The truth is that over 50% of the IDSA’s guidelines are based on “expert opinion” rather than “evidence-based medicine” as their publication suggests. A further 31% of the IDSA guidelines are based on observational studies. Only a meagre 29% of the IDSA Guidelines fit into “evidence-based medicine”.(22,23,24,25,27) Importantly, the IDSA’s own research supports these very findings.(22

Please understand for those of you just tuning in – THIS IS A WAR of epic proportions.

The reason we find ourselves here even 40 years after Lyme was “officially” discovered is due to money, power, and collusion at the highest level of government.  The government holds the patents on Borrelia burgdorferi (Bb), Lyme testing, the Lyme vaccine, and has been controlling the narrative for decades, even taking specific bands out of Lyme testing that show infection due to their patent on the Lyme vaccine.  

https://www.google.com/patents/US8680236 Gov. patent on OspA (outer surface protein) of Borrelia Burgdorferi (Bb).

https://www.google.com/patents/US6087097  Gov. patent on Lyme test based on OspA (outer surface protein) which causes the same disease it was meant to prevent which is the real reason it was yanked from the market.

https://www.google.com/patents/US4721617 Gov. patent on Lyme Vaccine

https://crymedisease.wordpress.com/2016/02/28/the-conspirators-they-own-the-patents-and-changed-the-testing/  A lengthy expose on all shenanigans for the stout of heart.

Please, don’t allow yourself to be fooled.  The powers that be have been controlling research and the narrative on Tick borne illness from the start.  Nothing about this is new. It’s as old as the hills.  In fact, one researcher has filed an anti-trust law-suit due to government suppression of a more accurate and cheaper Lyme test:  https://madisonarealymesupportgroup.com/2017/09/25/speaking-of-fake-science-fifty-seven-million-anti-trust-lawsuit-against-cdc-lyme-tests/

This same researcher and others have also complained of how the CDC is controlling the research being done:  https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/.  This article explains how they do it on a practical level: https://madisonarealymesupportgroup.com/2017/01/02/fake-science/

So while I’m extremely happy for these news stories, this abusive treatment of Lyme/MSIDS patients and the doctors who dare to treat them has been going on since it was formally given a name in the 80’s.

Category:

Activism, Lyme, Psychological Aspects, Testing

Lyme Wars Part 1 – Julia’s Story

https://www.nbcnewyork.com/on-air/as-seen-on/Debate-Over-Chronic-Lyme-Disease-Affects-Brooklyn-Teen_New-York-452584583.html Oct. 23, 2017 (News Video in link)

The Lyme Wars Part 1

Julia’s Story:  Teen’s Health Affected in Fight Over Chronic Lyme

The life of a Brooklyn teenager who once danced and played sports changed in nearly an instant. Now she takes more than 70 pills a day and is unable to walk as her doctor tries to treat what he calls chronic Lyme, a controversial diagnosis linked to Lyme disease-carrying ticks. Julia’s story is the first in our five-part investigative series. Stefan Holt reports.

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A 2015 report reveals Emblem Health stopped paying for Julia’s treatment which was giving her feeling back in her feet:  http://www.nbcnewyork.com/investigations/Lyme-Disease-Insurance-Fight-Investigation-360476931.html  Insurance companies have been hiding behind the outdated and unscientific CDC guidelines for decades, denying coverage for Lyme patients.  Since the testing misses over half of all cases and since the antiquated 2006 guidelines recommend 21 days of doxycycline for everyone, regardless of persisting symptoms, insurance companies get away with it.  One key point here is that treatment was working for Julia.  

Dr. Wormser and others who affiliate with the IDSA guidelines theorize & believe there should be antibodies present – but herein lies the problem which is two-fold; 1) the CDC has set up arbitrary levels of needed antibody presence and taken out key bands of the test (band 31 OspA & band 34 OspB) that are specific to infection due to their patent on the Lyme vaccine which also uses those bands, and while many patients do have antibodies they don’t have enough, and 2) it’s been proven some folks never mount an appropriate immune response to reveal these antibodies.  It’s a Catch-22 with multitudes not meeting the Lyme Cabal’s subjective criteria.

More on testing:  https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/

For more on the Lyme Wars:  https://madisonarealymesupportgroup.com/2017/10/24/the-lyme-wars-faces-of-the-health-crisis-a-digital-documentary/

 

 

Category:

Activism, Lyme, Testing, Ticks, Treatment

No Lyme in Oklahoma – Yeah Right

https://globallymealliance.org/bursting-woods-new-england-bubble/

by Jennifer Crystal

JENNIFER CRYSTAL ADDRESSES THE COMMON MYTH THAT LYME DISEASE ONLY EXISTS IN NEW ENGLAND.

Last summer, a friend who lives in Oklahoma found a classic bullseye rash on her seven-year-old daughter.

“That’s a spider bite,” a local pediatrician told her. “We don’t have Lyme in Oklahoma.”

The doctor was wrong. Had my friend taken his advice, her daughter would not have been diagnosed in a timely fashion and she would likely have developed symptoms over the next few months or years. She probably would have become severely debilitated, and the infections might have crossed the blood-brain barrier and become chronic.

In other words, the little girl could have wound up like me. For as it turns out, she did not have a spider bite. She had Lyme disease and two co-infections, Babesia and Bartonella.

Now she’s a healthy, happy second grader because a Lyme Literate Medical Doctor (LLMD) was brought in who accurately saw the bullseye rash for what it was. Another pediatrician ordered special tests, and started the child on proper medication for all three infections. Because they were caught early, those infections have now cleared up.

This little girl was lucky, but that’s because her mother was informed about Lyme and knew to persist beyond the “spider bite” diagnosis. But what about all those children whose parents and pediatricians aren’t Lyme literate? Especially those who live outside the so-called endemic areas?

I don’t believe the Oklahoma pediatrician meant harm with his inaccurate diagnosis. His lack of awareness stemmed from a common myth that Lyme only exists in New England, and specifically in the woods. I’ve had people in Massachusetts say to me,

“Oh Lyme—that’s the thing you get when you’re hiking, right?”

Yes and no. Ticks live not only in the woods but also in long grasses, gardens, woodpiles, leaf litter and on lawns. They love any moist, shady area. They feed not just on deer—another common myth—but also on mice, chipmunks, shrews, birds, and other small mammals. Therefore, they travel a lot. People travel, too. Someone from South Carolina might take a vacation in Maine, get bitten by a tick, and later be told by their doctor, “It can’t be Lyme. We don’t have it in the South.” In fact, cases of Lyme disease have been documented across the United States, and throughout the world.

New research published in the Journal of Medical Entomology shows that infected ticks are now in half the counties across the country, a number that has almost doubled since a similar survey was done in 1998. The study notes that over the past two decades, the black-legged tick

“has expanded from its northeastern focus northward into upstate New York, Vermont, New Hampshire, and northern Maine; westward across Pennsylvania, eastern Ohio, and New York; and south—and southwestward into West Virginia, Virginia, and North Carolina.” The study also notes a similar geographic expansion in the North-Central states. “The two previously distinct foci in the Northeast and North-Central states appear to be merging in the Ohio River Valley to form a single contiguous focus.”[1]

Ticks are spreading across the country, bringing not just Lyme but co-infections. These require different treatment and can complicate recovery.

Had my friend’s daughter only been treated for Lyme and not for Babesia and Bartonella, she would still be sick.

Some of these co-infections are specific to states that are nowhere near New England. Bourbon virus, a rare but potentially deadly illness, has been reported in Kansas and Oklahoma. The Heartland virus, spread through the bite of an infected Lone Star tick, has been found in Missouri, Tennessee and Oklahoma. Also transmitted by the Lone Star tick is Southern Tick-Associated Rash Illness (STARI), while dog ticks and Rocky Mountain wood ticks carry Rocky Mountain Spotted Fever.

Tick borne illnesses are rampant not just in New England, not just deep in the woods, but all across the country and world. As the International Lyme and Associated Diseases Society states on its website,

“ticks know no borders and respect no boundaries.”[2]

No matter where you live, if you have symptoms of Lyme and/or co-infections, it’s critical to see an LLMD. If you still have the tick, you can also get that tested. Follow the smart lead of my friend in Oklahoma, so you don’t wind up like me.

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

[1] Rebecca J. Eisen, Lars Eisen, Charles B. Beard; County-Scale Distribution of Ixodes scapularisand Ixodes pacificus (Acari: Ixodidae) in the Continental United States , Journal of Medical Entomology, Volume 53, Issue 2, 1 March 2016, Pages 349–386, https://doi.org/10.1093/jme/tjv237

[2] http://www.ilads.org/lyme/about-lyme.php

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**Comment**

Lyme/MSIDS is everywhere.  Do not let anyone tell you otherwise.  The entomology maps of tick locations have been used for decades keeping patients undiagnosed and untreated.  For a great article on how the Spielman maps have been an iron curtain keeping patients from getting tested:  https://doczz.net/doc/4593057/the-confounding-debate-over-lyme-disease-in-the-south (scroll to page 6 & 7 for details)

https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/ (Southern patients are STILL told there is no Lyme in the South.)

https://madisonarealymesupportgroup.com/2017/10/12/the-cdc-needs-a-good-dictionary/  This article is a perfect example of why all things related to Lyme/MSIDS has hardly budged in over 40 years.

As to testing, the current CDC two-tiered testing misses over half of all cases.  The “special” tests Ms. Crystal mentions are more sensitive but are not supported by main stream medicine for reasons I won’t delve into here (essentially governmental collusion, patents, power and money – read article about the CDC needing a good dictionary above).  

Great testing info here: https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/ and here,  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

Lyme literate doctors (LLMD’s) use the more sensitive testing but also diagnose patients clinically as some NEVER test positive.  This is important to know.  Here is a common checklist you can print out and complete on your own.  https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf              If you have a preponderance of symptoms – think TBI’s (tick borne illness); however, there is a caveat – some people present differently and don’t fit the classic mold.  For instance, for some, the only significant symptom is psychiatric:  

https://madisonarealymesupportgroup.com/2017/10/24/the-lyme-wars-faces-of-the-health-crisis-a-digital-documentary/Kyra, didn’t have the normally thought of symptoms – just horrible anxiety, depression, and hopelessness. Her doctor knows Lyme is the great imitator and suspected it despite a negative test. She tested positive for Ehrlichia, which implies contact with a tick. Due to the Lyme/MSIDS diagnosis Kyra went from blaming herself to understanding she now had something she could fight. After doxycycline they chose IV Rocephin – and Kyra became herself again. “The feeling of actually starting to recognize pieces of what I was before was such an amazing feeling.”

And don’t ever forget the probable involvement of coinfections which will significant complicate everything:  https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/

Category:

Activism, Babesia, Lyme, Rocky Mountain Spotted Fever, Testing, Ticks, Viruses

IGeneX Introduces 3 New Lyme Tests

https://www.lymedisease.org/igenex-new-tests-lyme-disease/

IGeneX introduces new tests for Lyme disease & tick-borne relapsing fever
Press release from IGeneX, October 16, 2017

IGeneX Inc., a CLIA and New York-approved Reference Laboratory, specializing in testing for tick-borne diseases, is pleased to announce the launch of three new tests that are more inclusive and specific for aiding in diagnosis of Borreliosis (Lyme Disease and Tick-Borne Relapsing Fever, Borreliosis).

— Lyme ImmunoBlotIgM and IgG

— Lyme ImmunoBlotIgM and IgGTBRF ImmunoBlot IgM and IgG

— Lyme ImmunoBlotIgM and IgGTBRF ImmunoBlot IgM and IgGLyme IGX Spot

— Lyme ImmunoBlotIgM and IgGTBRF ImmunoBlot IgM and IgGLyme IGX Spot

https://www.igenex.com/testing/  Go here for testing specifics

Borreliosis is caused by two groups of Borrelia, B. burgdorferi group and the Tick-Borne Relapsing Fever (TBRF) Borrelia group. Until recently, it was believed that B. burgdorferi group was the only group that caused Lyme-like symptoms. However, we now know that TBRF Borrelia also causes Lyme-like symptoms. Therefore, IGeneX developed two sets of Immunoblots, Lyme ImmunoBlot IgM and IgG and TBRF ImmunoBlot IgM and IgG.

Many patients with Lyme-like symptoms are misdiagnosed because: (1) The current serological tests cannot detect antibodies to all the different strains of B. burgdorferi (2) For TBRF Borrelia, only two serological tests, an IFA test for B. hermsii and a serological test that detects only B. miyamotoi GlpQ protein, are available. In addition, with the increase in tick populations, Borreliosis is on the rise. Thus, there is an urgent need for better diagnostic tests for Borrelisosi.

Because symptoms of Lyme and Tick-Borne Relapsing Fever are often similar, a more comprehensive battery of tests is critical for proper diagnosis.

“IGeneX’s new Lyme ImmunoBlot and the TBRF ImmunoBlot tests are the first, most inclusive and specific serologic tests for Lyme disease and TBRF,” said Dr. Jyotsna Shah, President and CEO of IGeneX. “These tests, when combined with Lyme IgX spot and PCR, cover the full spectrum of the disease.”

Lyme ImmunoBlots IgM and IgG

Although IGeneX Lyme Western blot prepared from Borrelia burgdorferi strains B31 and 297 is one of the most sensitive tests, it does not detect antibodies to all the B. burgdorferi sensu lato antigens. To develop all-inclusive Western blots would be very expensive and impractical. Therefore, IGeneX has developed a Lyme ImmunoBlot that is very specific and inclusive of most species of B. burgdorferi sensu lato for clinical use with the following advantages over a Western blot:

The specificity of the ImmunoBlot is 98.0% for IgM and 98.7% for IgG. This is higher than the traditional Western Blot.
The 31kDa Epitope confirmation test will not be required on patient samples tested by Lyme ImmunoBlots.
The sensitivity of the Lyme Immunoblot is 90.9% with well-defined samples.
The ImmunoBlot has better sensitivity compared to the current Western Blot, because it t is designed to detect antibodies to major burgdorferi sensu lato specific antigens from North America and European strains as listed below:
B. burgdorferi B31
B. burgdorferi 297
B. californiensis
B. mayonii
B. afzelii
B. garinii
B. spielmanii
B. valaisiana

TBRF ImmunoBlots IgM and IgG

The TBRF ImmunoBlot is designed to detect antibodies to specific antigens of TBRF Borrelia in human serum. It detects antibodies to B. hermsii, B. miyamotoi, B. turicatae and B. coriaceae. Based on in-house studies these blots detect antibodies to North American, European and Australian strains of TBRF Borrelia in patient serum samples. The specificity of the TBRF ImmunoBlot is 94% and 98% for IgM and IgG respectively.

Lyme IGX Spot

The Lyme IGXSpot is an Enzyme-Linked ImmunoSpot (ELISPOT) assay that detects human T cells reactive to B. burgdorferi-specific antigens in vitro. ELISPOT is a widely used method for detecting and monitoring cellular immune responses to specific antigens.

The Lyme IGX Spot test:

Detects specific T-cell responses soon after B. burgdorferi infection, when antibodies to the organisms are not detectable or late in the disease, when the levels of antibodies are very low.
When combined with Lyme ImmunoBlot tests, information on the full spectrum of patient’s immune response to infection and stage of disease is obtained.
Is especially useful for seronegative patients.

 

Category:

Lyme, Testing

Dr. Miller – A New Perspective on Lyme Disease

http://boston.cbslocal.com/2017/09/29/nightside-a-new-perspective-on-lyme-disease/#.Wd-Sm920CCQ.twitter   By Dan Rea

Click on link above listen to interview.

NightSide – A New Perspective on Lyme Disease

BOSTON (CBS) – Dr. Alfred Miller is a Mayo Clinic trained physician with four decades of experience running a private practice. He believes that there may be a connection between Lyme Disease, ALS, and MS. Tonight, he joins Dan in studio (all the way from Texas!) to talk about his research and take some listener calls. Tune in to hear his perspective and find out about some of the cases he’s seen.

**Comment**

Great interview.  Dr. Miller points out the insensitivity of current CDC 2-tier testing, the fact many patients with autoimmune diseases have undiagnosed Lyme, that other insects carry borrelia, the causative agent of LD, and the importance of going off immunosuppressive drugs for at least a month, taking at least 21 days of doxycycline to evoke an immune response, and then taking a Lyme test. (Please only work with a Lyme literate doctor.  Contact your local support group for more doctor information)

A word of caution:  while some LLMD’s use the CD-57, others do not.

https://heallyme.wordpress.com/2009/01/28/understanding-the-cd-57-test/   It is important to remember that the CD57 result is just a number; far more important is the patient’s clinical status. An old professor of mine used to say, “treat the patient, not the lab test!” There is still much we do not know about the CD57 marker and what other factors may lower or raise it.

Dr. Marty Ross rarely uses the CD-57 – here’s why:  http://www.treatlyme.net/treat-lyme-book/cd-57-test-rarely/  I rarely recommend a CD-57 test because in most situations it is not useful and has no real predictive or helpful value in charting the course of a person’s care. See why in this Lyme Byte from our webinar Conversations with Marty Ross MD on 09/10/13.  The CD-57 is a type of a natural killer white blood cell that often is less than normal in chronic Lyme disease. Some other Lyme literate medical doctors recommend it as a way to see if a person has Lyme and to follow the course of his/her treatment.

Dr. Miller points out that doxycycline only kills the spirocheteal form and the L-form of Lyme and does not kill the cyst form so when people are given doxy only, they are not eradicating the organism.  Most LLMD’s use a combination of antibiotics.  Only uninformed practitioners use doxy only.

He also recommends the IgeneX test.  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/

A Couple of points:  Some patients NEVER test positive on any Lyme test and/or coinfection test for that matter.  In fact a highly reputable LLMD in WI states the very sickest patients often never test positive.  It truly helps to print and fill out Dr. Horowitz’s questionnaire.  If you have a preponderance of symptoms, chances are high you have Lyme:  https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf

Also, consider these coinfection checklists:

https://madisonarealymesupportgroup.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/  Babesia

https://madisonarealymesupportgroup.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/  Bartonella

Please contact your local support group.  Seriously, these people are the boots on the ground and are familiar with the lay of the land in your state.  They know the good treating physicians, their costs, their regimens, and other helpful information.  You do not have to go this alone.

More on Dr. Miller:  https://madisonarealymesupportgroup.com/2017/05/11/dr-al-miller-lyme-disease-series/

Contact Dr. Miller:  Lymediagnosis@gmail.com

 

 

 

 

 

Category:

Activism, Lyme, Testing