Archive for October, 2017

Lyme Wars – Part 3

http://www.nbcnewyork.com/on-air/as-seen-on/Lyme-Wars-Part-III-How-Science-Could-Overcome-Lyme_New-York-453167163.html  (Click on link for news video)

Erica Byfield reports on a Johns Hopkins University research center dedicated to curing the tick-borne illness. This is the third in our five-part series on Lyme disease and the debate over the controversial diagnosis of chronic Lyme.

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**Comment**

Christine Heidt of the University of Alberta has written a clear treatise on the issue of the persistence of Lyme (borrelia) TheCaseforthePersistenceofLymeDiseaseAfterAntibioticTherapy

In a study published over 20 years ago, it was reported that “Antibiotic therapy with penicillin, doxycycline, and ceftriaxone has proven to be effective for the treatment of Lyme borreliosis. In some patients, however, it was noticed that borreliae can survive in the tissues in spite of seemingly adequate therapy.”(14) Interestingly, recent studies support this same conclusion. Additionally, researchers have observed that either of the two antibiotics that were administered in the IDSA studies were found to initiate the transformation of the LD spirochete into treatment resistant persister cells and other bacterial forms.(5,6,9,10,11,12,13,14,15,16) Ironically, the four clinical trials meant to support the IDSA’s PTLDS model actually serve to support this recent research, which in turn supports ILADS assertion of reversion to persistent bacteremia causing ongoing symptoms, rather than the IDSA’s expert opinion that the infection has been eradicated and residual symptoms remain indefinitely….

A recent research article co-authored by, Dr Paul Auwaerter (President-elect of the IDSA), entitled “Drug Combinations against Borrelia burgdorferi Persisters In Vitro: Eradication Achieved by Using Daptomycin, Cefoperazone and Doxycycline” suggests that perhaps even the IDSA’s own members are not fully convinced of the IDSA’s version of chronic Lyme disease.(10) While Auwaerter asserts that the cause of PTLDS is unknown, he admits that “findings that suggest the continued presence of B. burgdorferi in some form indicate that current Lyme disease treatment may not sufficiently eliminate B. burgdorferi persisters or that the immune system fails to clear persisting organisms or bacterial debris, which may be the underlying cause for those who suffer from unresolved Lyme disease symptoms.”

Prior to this publication, Dr Auwaerter co-authored a publication with IDSA LD Guidelines members entitled “ Antiscience and ethical concerns associated with advocacy of Lyme disease” where he and the other authors attempt to discredit any research that does not support the IDSA’s PTLDS theories, with statements such as “Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science.”(21)  

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) Furthermore, various IDSA members that co-authored the “Antiscience and ethical concerns” publication(21) were also involved with the creation of the Lyme Guidelines although they, themselves hold competing interests. Some members hold patents for LD products, some own shares in companies that have vested interests with the diagnosis and treatment of LD and some act as “expert witnesses in malpractice litigation” against any Dr that dares to question their “expert opinion”.(22,26) Rather than sharing information and learning from others, the IDSA continues to belittle, publicly attack and/or attempt to jail any Dr or researcher that does not endorse their Lyme disease Guidelines and policies.(22) 

Animal studies have also shown detectable borrelia DNA:  Straubinger’s dog study (persist & reactivate).pages

B. burgdorferi disseminates through tissue by migration following tick inoculation, produces episodes of acute arthritis, and establishes persistent infection. The spirochete survives antibiotic treatment and disease can be reactivated in immunosuppressed animals.

http://archives.republicans.foreignaffairs.house.gov/112/HHRG-112-FA16-WState-BartholdS-20120717.pdf  by Stephen W. Barthold, DVM, PhD

It’s been demonstrated in dogs, mice, and monkeys that non cultivable spirochetes persist following antibiotic treatment.  So, researchers have been able to detect borrelia DNA but they have not been able to culture it from tissues.  This has led many researchers to conclude that after treatment with antibiotics, spirochetes are viable but not infectious.

http://www.hoajonline.com/infectdis/2052-5958/1/2

Stricker and Johnson state that the Embers et al. monkey study provides animal evidence for persistent infection when three quarters failed antibiotic treatment and had persistent infection showing up in tissues at necropsy using PCR.  It’s also important to note that “small numbers of intact spirochetes were recovered by xenodiagnosis from treated monkeys.”  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3256191/

What this means is researchers put ticks void of infection upon the monkeys after treatment.  After a blood meal they removed the ticks and found spirochetes in them proving there were still spirochetes in the treated monkeys.

This has been done in humans too:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3952603/

Dr. Betty Maloney states that the positive xenodiagnostic test in a persistently ill post-treatment subject is highly significant evidence of persistence infection; however, she feels the authors went to great lengths to discount the significance and only questioned whether the recovered DNA was just dead remnants that happened to be in the tick bite site, or due to patient noncompliance with previous therapy, inadequate blood levels of antibiotics, or re-infection.  https://www.lymedisease.org/TheLymeTimes-V26-3/index.html#25/z  The authors concluded there was insufficient evidence.

To read Dr. Horowitz’s comment about episode 3 on his FB page:  https://www.facebook.com/drrichardhorowitz/posts/1524119334343526 He too lists studies as well as the fact treating physicians have found antibiotics to significantly help improve the quality of life of patients and that recent peer-reviewed studies have shown borrelia can persist like TB and leprosy due to biofilms and dormant forms.

https://madisonarealymesupportgroup.com/2017/08/18/drexel-prof-lyme-persists/

https://madisonarealymesupportgroup.com/2016/12/21/dr-zhang-on-persisters/

https://madisonarealymesupportgroup.com/2015/09/19/proof-of-borrelia-persistence/

https://madisonarealymesupportgroup.com/2017/08/25/sleeper-cells-the-stringent-response-and-persistence-in-the-borreliella-burgdorferi-enzootic-cycle/

And so the circle goes round and round without end.  The IDSA states none of this proves infection.  We ALL want to know why folks are still sick.

And the IDSA wants to have us believe Lyme disease is simple.  Really?

 

Category:

Activism, Lyme, research, Testing

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

November Milwaukee Support Group Meeting

SE WI Lyme Support November Speaker meeting:
11/18/17 3:30-5:00 pm
11345 N Cedarburg Rd, Mequon, WI 53092 (Mequon Public Library)

Join us for our second speaker meeting featuring Kari Uselman, holistic medicine practitioner in Oshkosh, Wisconsin. Her talk will focus on alternative treatments and therapies related to Lyme recovery. Check out her website at http://wellnessessentialsllc.com/

Hope to see everyone there. Family and friends welcome!

Anne Marie Levendusky
amlevendusky@gmail.com

Category:

Meetings, Uncategorized