The Lyme Wars, Part 2: Which Way Should We Treat?

August 7, 2019

https://www.forbes.com/sites/judystone/2019/08/03/the-lyme-wars-part-2-which-way-should-we-treat/#37e2f251d92a  Article found here

In this follow-up to Part 1:  https://madisonarealymesupportgroup.com/2019/08/04/the-lyme-wars-major-organizations-arent-playing-nicely-together/, the author again points out the various sides of the Lyme war.

I disagree with the author on a number of points:

  1. She states that ILADS trained practitioners use “home brewed” tests, which is propaganda straight out of the CDC website. If you call CLIA-certified labs “home brewed,” then you are clueless that these labs undergo some of the most stringent lab requirements and that these labs specialize in bacteriology and virology.  It’s what they do. For more:  https://madisonarealymesupportgroup.com/2018/01/20/review-of-lyme-tests-how-to-diagnose-lyme-dr-marty-ross-llmd/
  2. “Believing” in climate change is irrelevant here. It has nothing to do with tick and disease proliferation:  https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/, https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/, and in fact researchers have been called out on research bias in purposely creating a paradigm to prove a gradual northern tick expansion when in fact ticks already exist in those locations:  https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/
  3. Taking a middle of the road between the CDC guidelines and the ILADS guidelines appears at first blush like a smart thing to do; however, it is short-sighted. It appears the author believes that ILADS allows patients to completely steer the ship and choose their own treatment. This is an inaccurate portrayal of the dynamic doctor, patient partnership.  While ILADS trained doctors listen to patients and work with them, it’s hardly the standard for the patient to choose their treatment. I know many ILADS trained doctors due to my role as a patient advocate. These are some of the most caring, intelligent, and savvy doctors I know. Many go all over the world to continue to add to their medical learning.
  4. While the author may hate the term “Lyme literate,” if the shoe fits then wear it. Mainstream medical doctors are woefully trained in tick-borne illness.  Woefully.  Instead of feeling threatened, why don’t you change that and get trained? I’ve attended ILADS conferences. The information is extremely scientifically based.
  5. The author desperately wants to put Lyme/MSIDS into a nice, neat box. It will never fit. Due to the high variability with what a person’s infected with, how the immune system responds, the life style choices a patient makes, environmental factors and so on, what works for one patient won’t work for another.
  6. I’d be careful about what you call “dubious” value with various treatments. I’ve seen patients improve on the wildest things and again much of this is due to individual response. As our grandmas used to say, “Necessity is the mother of invention.” We are desperate patients working under doctors who are desperately trying to help us. We try many things in our journeys – some helpful, some not.  And while we must always remain vigilant to snake-oil salesmen, this isn’t a new problem. There are snake-oil salesmen all over the place – including in mainstream medicine. 
  7. Seemingly, the only way this doctor is going to change her opinion is by experiencing these things herself. But experience can change everything if you let it; however, there are mainstream doctors who are infected and see an ILADS trained practitioner, yet won’t treat patients the same way – showing the extreme disconnect some people choose to live with.
One thing’s for certain – the Lyme Wars are alive and well.

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A Bold Plan Against Lyme And Other Tick-borne Diseases

https://www.lymedisease.org/keber-ahern/

A bold plan against Lyme and other tick-borne diseases

tick that carried Lyme disease

By Barbara Keber, MD, and Holly Ahern

We need a national public-private strategy that abandons our current low-impact approach to diseases brought by ticks.

If you have not yet suffered with Lyme disease or one of the illnesses associated with the bite of a tick, you probably know someone who has — or who will. This growing public health threat requires a strong national response that advances research to improve prevention, diagnostic testing and treatment.

Specifically, we need a multibillion-dollar, national public-private partnership — an initiative that must address more than just Lyme disease and must go beyond the current low-impact strategy of telling the public to beware of ticks, wear white socks or shower after being outdoors.

The partnership should include federal agencies, pharmaceutical companies, state health departments, universities, laboratories and medical centers. And it should include patient representatives.

This is a serious threat. Diseases carried by ticks can cause life-altering disorders — joint and muscle pain, permanent neurological disorders, profound fatigue, memory loss, headaches and death. And the societal and treatment costs of these illnesses and lost productivity is in the billions.

Although Lyme disease is the most prevalent and best known of the various diseases ticks can transmit to humans, the Centers for Disease Control and Prevention lists at least 13 illnesses caused by ticks. The CDC has reported a dramatic increase in all tick-borne diseases.

Lyme disease cases have grown from the first identified case in 1975 to more than 300,000 new cases per year. Other tick-borne diseases have increased by more than six-fold between 2004 and 2017, from about 2,700 cases per year to more than 16,000. The CDC has acknowledged that “the United States is not fully prepared to control these threats.”

Three priorities

The first priority to prevent tick-related illnesses, regardless of cost, is to develop a vaccine against all tick-borne diseases.

A second priority is to improve diagnostic tests. Currently, treatment decisions hinge on the results of blood tests that more than 50 percent of the time can’t accurately identify patients who have Lyme disease, discriminate between active infection or past infection, or identify the presence of other tick-borne illnesses.

Based on the results of current blood tests, medications may not be prescribed to people that would be helpful, or they may be provided with unnecessary medications. From a health care perspective, this is unacceptable.

A third priority is to improve environmental control measures, such as more effective yet safe tick-killing products, repellents for humans and pets, and new approaches to landscape barriers that go beyond mulching the perimeter of one’s lawn.

Barriers include anything from fencing to keep out animals that carry ticks to anything that creates separation between wooded or high-grass areas and those areas where people play or work outdoors.

The Tick Borne Disease Working Group, created by the U.S. Department of Health and Human Services, submitted its report to the HHS secretary and Congress in December. Now, the public must demand that its recommendations — filling gaps in the areas of prevention, diagnosis, and treatment — be approved at a faster pace.

The occurrence and consequences of tick-borne diseases are increasing and this increase will continue unless we find big solutions to this big problem.

Barbara Keber, MD, practices family medicine in Glen Cove, NY, and is president of the New York State Academy of Family Physicians. Holly Ahern is an associate professor of microbiology at SUNY Adirondack, and was a member of the Testing and Diagnostic Subcommittee of the Tick Borne Disease Working Group.

________________

**Comment**

I’m extremely wary of the first priority outlined here of developing a vaccine against all tick-borne diseases “at all costs.” First, when you study how vaccines work, you understand they are created to evoke an immune response by causing inflammation. This is also what Lyme/MSIDS does.

It seems counter productive to me, a mere layman, to do both at the same time.

We are also armed with the knowledge that vaccines can activate latent infections. How many of the unsuspecting public have latent infections?  https://madisonarealymesupportgroup.com/2016/04/24/gardasil-and-bartonella/

https://madisonarealymesupportgroup.com/2017/12/02/scottish-doctor-gives-insight-on-lyme-msids/

Also, from my understanding, trying to hit all the variations, species, and subtypes of these pathogens would be akin to trying to create a vaccine for the flu, which is constantly changing and is a moving target. The flu vaccine is never effective: https://madisonarealymesupportgroup.com/2019/07/10/cdc-admits-flu-vaccine-failed-91-of-the-time-against-current-flu-strain/

https://madisonarealymesupportgroup.com/2018/10/23/influenza-vaccines-dengue-like-disease/

If we are serious about this pandemic, work should be gone into:
  • accurate testing
  • appropriate treatment
  • how it’s transmitted (congenital, breast milk, sexually, other bugs, etc)
  • how it survives (persistence)
  • how to make this affordable (getting insurance companies to pay)
  • the various ways it presents (symptomology)
  • doctor education
  • the synergistic effects of all the pathogens on the human body

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UK Lyme Disease Cases ‘Three Times Higher Than Estimated’

https://www.medscape.com/viewarticle/916256

UK Lyme Disease Cases ‘Three Times Higher Than Estimated’

Tim Locke

August 01, 2019

Current annual estimates of confirmed Lyme disease cases are between 2000 and 3000 in England and Wales, according to Public Health England.

However, research published in BMJ Open suggests the real figure for the tick-borne disease could be three times higher and may reach more than 8000 this year although an expert has urged caution, saying the findings could be an overestimation.

A second study published in the same journal supported targeted public health intervention at identified Lyme disease hotspots.

General Practice Data

The research team analysed anonymised data from Clinical Practice Research Datalink (CPRD) between 2001 and 2012. This covered around 8.4 million individuals from 658 general practices – around 8% of the UK population.

Lyme disease diagnoses were categorised as

  • Diagnosed clinically (1702, 42%)
  • Suspected and treated (1913, 47%)
  • Possible and treated (468, 11%)

Summers saw the highest number of Lyme disease cases and the largest amount were in Scotland. This was thought to be due to the popularity of hiking, and a rainier climate. The regions coming second and third for Lyme disease incidence were South Central England and South West England, but cases were seen in all areas.

CPRD recorded cases rose from 60 in 2001 to 595 in 2012, and a UK-wide estimate of 7738 for 2012.

Unsurprising Findings

“I wasn’t very surprised, because plenty of people have been suggesting that the incidence is higher than has been estimated,” one of the study authors, retired doctor Victoria Cairns from Oxford told Medscape News UK.

With some diseases, incidence can rise along with public and medical awareness of symptoms. However, “There’s more I think,” Dr Cairns said: “Every year there is more.”

The new research paper doesn’t speculate about the reasons for the growth in cases. “Other people have speculated that it’s climate change, Dr Cairns said. “There are all sorts of explanations. Partly, climate change is warmer. In some places, there are more deer so ticks are feeding off different animals, so that could be part of it.”

She has a personal interest in the subject: “I have had Lyme disease, quite a long time ago.”

She documented it – and post-Lyme disease symptoms – in the International Journal of Epidemiology in 2005.

_________________

For more: https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/  Warm winters are lethal to black legged ticks.

https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

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Fort Detrick Lab Shut Down After Failed Safety Inspection; All Research Halted Indefinitely

https://www.fredericknewspost.com/news/health/fort-detrick-lab-shut-down-after-failed-safety-inspection-all/article_

Fort Detrick lab shut down after failed safety inspection; all research halted indefinitely

By Heather Mongilio hmongilio@newspost.com

Updated

USAMRIID
The U.S. Army Medical Research Institute of Infectious Diseases at Fort Detrick.  News-Post file photo

All research at a Fort Detrick laboratory that handles high-level disease-causing material, such as Ebola, is on hold indefinitely after the Centers for Disease Control and Prevention found the organization failed to meet biosafety standards.

No infectious pathogens, or disease-causing material, have been found outside authorized areas at the U.S. Army Medical Research Institute of Infectious Diseases.

The CDC inspected the military research institute in June and inspectors found several areas of concern in standard operating procedures, which are in place to protect workers in biosafety level 3 and 4 laboratories, spokeswoman Caree Vander Linden confirmed in an email Friday.

The CDC sent a cease and desist order in July.

After USAMRIID received the order from the CDC, its registration with the Federal Select Agent Program, which oversees disease-causing material use and possession, was suspended. That suspension effectively halted all biological select agents and toxin research at USAMRIID, Vander Linden said in her email.

The Federal Select Agent Program does not comment on whether a program such as USAMRIID is registered and cannot comment on action taken to enforce regulations, Kathryn Harben, a spokeswoman for the CDC, wrote in an email.

“As situations warrant, [Federal Select Agent Program] will take whatever appropriate action is necessary to resolve any departures from regulatory compliance in order to help ensure the safety and security of work with select agents and toxins,” Harben said in the email.

The suspension was due to multiple causes, including failure to follow local procedures and a lack of periodic recertification training for workers in the biocontainment laboratories, according to Vander Linden. The wastewater decontamination system also failed to meet standards set by the Federal Select Agent Program, Vander Linden said in a follow-up email.

“To maximize the safety of our employees, there are multiple layers of protective equipment and validated processes,” she said.

Vander Linden could not say when the laboratory would be able to continue research.

“USAMRIID will return to fully operational status upon meeting benchmark requirements for biosafety,” she said in an email. “We will resume operations when the Army and the CDC are satisfied that USAMRIID can safely and consistently meet all standards.”

USAMRIID has been working on modified biosafety level 3 procedures and a new decontamination system since flooding in May 2018. This “increased the operational complexity of bio-containment laboratory research activities within the Institute,” she said.

At the time of the cease and desist order, USAMRIID scientists were working with agents known to cause tularemia, also called deer fly or rabbit fever, the plague and Venezuelan equine encephalitis, all of which were worked on in a biosafety level 3 laboratory. Researchers were also working with the Ebola virus in a biosafety level 4 lab, Vander Linden said.

Of the pathogens, Ebola, bacteria Yersinia pestis (plague), and bacterium Francisella tularensis (tularemia) are on the list of the Health and Human Services select agents and toxins. The three are considered Tier 1 agents, which pose a severe public health and safety threat.

Venezuelan equine encephalitis also falls under the Federal Select Agent Program, according to the Code of Federal Regulations.

The military research institute is looking at each of its contracts to see what will be affected by the shutdown. USARMIID work outside the lab is not expected to be affected, including on Ebola, Vander Linden said.

“We are coordinating closely with the CDC to ensure that critical, ongoing studies within bio-containment laboratories are completed under appropriate oversight and that research animals will continue to be cared for in accordance with all regulations,” she said in an email. “

Although much of USAMRIID’s research is currently on hold, the Institute will continue its critical clinical diagnostic mission and will still be able to provide medical and subject matter expertise as needed to support the response to an infectious disease threat or other contingency.”

According to the Code of Federal Regulations, which also lists required training, records and biosafety plans, Federal Select Agents Program registration can be suspended to protect public health and safety. It is not clear if this is why the USAMRIID registration was suspended.

The code also gives the Department of Health and Human Services, under which the CDC falls, the right to inspect any site and records, without prior notifications. Vander Linden said in the email that the CDC inspected USAMRIID several times over the past year, both unannounced and on a regularly scheduled basis.

USAMRIID will work to meet requirements set by the Army and the CDC and have its suspension lifted, Vander Linden said.

“While the Institute’s research mission is critical, the safety of the workforce and community is paramount,” she said.

“USAMRIID is taking the opportunity to correct deficiencies, build upon strengths, and create a stronger and safer foundation for the future.”

_______________________

And perhaps do a lot of paper shredding……

https://madisonarealymesupportgroup.com/2019/08/06/kris-newby-responds-to-telfords-criticism-of-bitten/  In this link, investigative journalist Kris Newby explains:

The Army explained:“In 1953, the Biological Warfare Laboratories at Fort Detrick established a program to study the use of arthropods for spreading anti-personnel BW agents. The advantages of arthropods as BW carriers are these: they inject the agent directly into the body, so that a mask is no protection to a soldier, and they will remain alive for some time, keeping an area constantly dangerous.” Source: U.S. Army Chemical Corps, “Summary of Major Events and Problems (Fiscal Year 1959),” Rocky Mountain Arsenal Archive.

Burgdorfer, the discoverer of the Lyme bacterium, was a key member of this project team. He worked on weaponizing ticks and teamed up with fellow tick expert James Oliver at the Ft. Detrick bioweapons headquarters to develop ways to mass produce infected ticks so that they could be dropped from airplanes on enemy territory. These claims are backed up by interviews with these scientists, as well as with extensive government documentation from multiple reliable sources, all listed in BITTEN…

And after my interview, I verified his claims with recently released documents, including a 1962 Memorandum to the NIH Director that says that Dr. Burgdorfer, “was engaged for 3 years on classified projects (Army) from which findings could not be published because of their impact on national defense.”

The institute, which has about 900 employees, studies germs and toxins that could be used to threaten the military or public health. It also investigates disease outbreaks and carries out research projects for government agencies, universities and drug companies, which pay for the work.  https://madisonarealymesupportgroup.com/2019/08/13/deadly-germ-research-is-shut-down-at-army-lab-over-safety-concerns/

Excerpt:

The select agents and toxins list is found here. According to the NBACC website, the facility conducts research on pathogens for which there is no vaccine or treatment.  https://www.selectagents.gov/SelectAgentsandToxinsList.html

INTERESTINGLY, THE FOLLOWING FROM THE LIST ARE TRANSMITTED BY TICKS:

https://madisonarealymesupportgroup.com/2019/07/31/tick-expert-admits-to-working-on-ticks-dropping-them-out-of-airplanes/

https://madisonarealymesupportgroup.com/2019/08/04/lyme-disease-amendment-passes-house-tells-dod-ig-to-investigate-the-bioweaponization-of-ticks/

https://madisonarealymesupportgroup.com/2019/07/19/biological-warfare-experiment-on-american-citizens-results-in-spreading-pandemic/

https://madisonarealymesupportgroup.com/2019/07/21/got-15-minutes-the-officially-ignored-link-between-lyme-plum-island/

https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

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EM: Course & Outcome in Patients Treated With Rituximab

August 6, 2019

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6634433/

. 2019 Jul; 6(7): ofz292.
Published online 2019 Jun 19. doi: 10.1093/ofid/ofz292
PMCID: PMC6634433
PMID: 31334301

Erythema Migrans: Course and Outcome in Patients Treated With Rituximab

Vera Maraspin,1 Petra Bogovič,1 Tereza Rojko,1 Eva Ružić-Sabljić,2 and Franc Strle1

Abstract

Background

Information on Lyme borreliosis (LB) in patients treated with rituximab is limited to individual case reports.

Methods

We reviewed data on adult patients diagnosed with typical erythema migrans (EM) at the LB outpatient clinic of the University Medical Center Ljubljana, Slovenia, in the 10-year period 2008–2017. For all patients, clinical and laboratory information was acquired prospectively using a standardized questionnaire.

Results

Among 4230 adult patients with a diagnosis of EM, 7 patients (0.17%), 5 women and 2 men with a median age of 65 years (range, 55–66 years), were receiving rituximab for an underlying medical condition. In these 7 patients, signs of disseminated LB (43%) and the isolation rates of borreliae from blood before antibiotic treatment (40%) were unusually high compared with corresponding findings in immunocompetent patients who had EM diagnosed at the same institution (8% vs <2%, respectively). The rates of LB-associated constitutional symptoms and borrelial antibodies in serum were lower than expected (14% and 29%, respectively, in patients receiving rituximab vs 25% and 65% in immunocompetent patients). One of the 7 patients (14%) experienced treatment failure; nevertheless, the outcome of early LB 1 year after antibiotic treatment, as used for immunocompetent patients with EM, was excellent in all 7 patients.

Conclusions

Findings in 7 patients with EM who were receiving rituximab for underlying disease suggest that although early LB in these patients is more often disseminated than in immunocompetent patients, the outcome 1 year after antibiotic treatment, as used for immunocompetent patients, is excellent.

_________________

**Comment**

There should be followed up done on these patients. A one year outcome, if you understand Lyme disease at all, is a short period of time.

Rituximab, a cancer medicine that interferes with the growth and spread of cancer cells, is used alone or in combination with other medicines to treat the following conditions in adults:

Rituximab may cause a serious brain infection that can lead to disability or death, as well as severe skin problems. You are supposed to tell your doctor if you have any of the following before using the drug:

  • liver disease or hepatitis (or if you are a carrier of hepatitis B)
  • kidney disease
  • lung disease or a breathing disorder
  • a weak immune system (caused by disease or by using certain medicines)
  • an active infection, including herpes, shingles, cytomegalovirus, chickenpox, parvovirus, West Nile virus, or hepatitis B or C
  • heart disease, angina (chest pain), or heart rhythm disorder
  • if you have used rituximab in the past
  • pregnancy – it can harm the unborn baby

According to this, Rituximab suppresses the immune system:   https://medivizor.com/blog/SampleLibrary/rheumatoid-arthritis/the-effect-of-rituximab-treatment-on-the-immune-system/

Biological drugs are becoming more popular as a treatment for rheumatoid arthritis (RA). Rituximab is one such drug that works by blocking the activity of immune cells. This then reduces the high level of inflammation seen in the joints of RA patients. Longer courses of treatment are needed for rituximab to be completely effective.

This prolonged treatment can weaken a patient’s immune response and can lead to a condition called hypogammaglobulinemia. This is an immune disorder where the body’s antibody levels are severely reduced, which increases the risk of serious infections.

LLMD’s typically do not recommend immune suppressants for Lyme/MSIDS patients unless they are on antibiotics in tandem. This research study shows why – those in Rituximab had more disseminated Lyme and more borrelia isolated from the blood.  By suppressing the immune system the infection has a greater ability to take over. The fact they had fewer constitutional symptoms and borrelia antibodies in serum means little.  Given time, this could change in a heart-beat. I suspect there were more treatment failures if they followed up on these patients up over years of time.

Patients in the study with solitary EM were prescribed oral antibiotics:

  • doxycycline (100 mg twice daily for 14 days)
  • cefuroxime axetil (500 mg twice daily for 15 days)
  • azithromycin (500 mg twice daily on the first day followed by 500 mg once daily for 4 subsequent days)
  • patients with multiple EM were treated with ceftriaxone (2 g once daily intravenously for 14 days)

For this study, treatment failure was defined as

  1. the occurrence of objective extracutaneous manifestations of LB within 1 year after the start of antibiotic treatment
  2. the appearance/persistence of subjective symptoms or their increased intensity (at the 1-year follow-up visit) that could not be attributed to other causes
  3. persistence of a skin lesion (ie, still visible EM) at a follow-up visit 2–3 months after commencement of treatment
  4. demonstration of borreliae by skin culture at the site of previous EM 2–3 months after the start of treatment (only patients with isolation of borreliae from skin before antibiotic treatment underwent repeated biopsy)

Patients with treatment failure were treated again with an alternative antibiotic.

By looking at the drugs listed, we can see right away that doxy has been shown to throw the spirochete into the non-cell wall form to reemerge later:   https://madisonarealymesupportgroup.com/2019/04/30/the-functional-molecular-effects-of-doxycycline-treatment-on-borrelia-burgdorferi-phenotype/

The emphasis on external lesions is a mistake. Research has shown that antibiotics clear the EM but won’t clear a systemic infection:  https://madisonarealymesupportgroup.com/2017/03/24/one-pill-of-doxy-only-reduces-prevalence-of-rash-not-lyme-disease/

And something must be said about antibiotic levels as well.  In this timely video, Dr. Burrascano explains how some patients need higher drug levels to kill pathogens:  https://madisonarealymesupportgroup.com/2018/12/28/the-history-of-lyme-disease-dr-burrascano/

A one sized approach for Lyme/MSIDS is another mistake.

Sadly, the authors conclude that after one year everyone’s dandy, when nothing could be further from the truth.

 

 

 

 

 

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