Archive for the ‘Lyme’ Category

Research For Chronic Lyme Fellowships Awarded

https://globallymealliance.org/press-releases/gla-expands-research-program-announcement-inaugural-postdoctoral-fellowships/

FIVE POSTDOCTORAL SCIENTISTS WILL FOCUS ON CHRONIC LYME

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GREENWICH, Conn (Dec. 5, 2017)—Global Lyme Alliance (GLA), the leading 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness, today announced the awarding of its first-ever fellowships to five young postdoctoral scientists whose work focuses on Post-Treatment Lyme Disease Syndrome (PTLDS) or chronic Lyme.

The three-year fellowships, made possible with the support of Deborah and Mark Blackman, will support five recent Ph.D. graduates with specific interest in understanding whether persistence of the bacteria Borrelia burgdorferi, the Lyme disease pathogen, or host evasion mechanisms are responsible for the continued symptoms experienced by patients treated for Lyme disease.

“The new fellows are hard-working and brilliant young scientists with fresh ideas who will tackle the mechanistic underpinnings of PTLDS,” said Mayla Hsu, Ph.D., GLA’s director of research and grants. “We’re delighted to be able to support these researchers at the beginning of their careers.”

The five are:

  • George Aranjuez, Ph.D., University of Central Florida, is studying the molecular mechanisms that Borrelia uses to survive during mammalian infection and how it evades the immune system.
  • Ashley Groshong, Ph.D., University of Connecticut, is examining the link between Borrelia protein metabolism and its ability to form persister cells thus evading antibiotic assault.
  • Matthew Muramatsu, Ph.D., University of Texas-Southwestern, is exploring how the genetics of persister Borrelia differ from that of replicating bacteria. His work will focus on how the transcription signals that start the persister pathway are regulated.
  • Bijaya Sharma, Ph.D., Tufts University, is studying whether immune deficiency is related to continued symptoms in Borrelia-infected mice. Her work explores the genetic factors in Borrelia that underlie bacterial persistence.
  • Xuran Zhuang, Ph.D., University of Maryland, will use tick microinjection to study the growth of persister bacteria and its genetic pathways in samples she recovers from patients.

The “Blackman-GLA Postdoctoral Fellowships” will total $1,125,000. Each fellow will receive $75,000 per year, for each of the three years, including travel expenses to Lyme disease conferences and an invitation to GLA’s annual closed-door scientific symposium, where they will participate in scientific discussions, present their findings and meet with program donors Deborah and Mark Blackman.

All applicants were required to submit a detailed scientific proposal for expert review. Annual reports on progress of project milestones will be required before second and final installments will be awarded.

“Supporting young researchers at the beginning of their careers shows the commitment of GLA and the Blackmans to nurture the development of a cadre of experts in the Lyme disease field,” said Scott Santarella, GLA’s CEO. “We also hope that the findings of these scientists will be potentially broadly applicable to other infectious diseases.”

In addition to the fellowships, GLA awards grants each year to researchers working on promising projects that best fulfill the organization’s goal to improve diagnostic testing and uncover more effective treatment protocols. Proposals received for the 2017-18 research grant cycle represented a broad range of interests ranging from tick ecology to co-infections, from new treatment approaches to basic biology of Borrelia infection in the mouse model, in both its acute and chronic stages. The 2017-18 grantees will be announced before the end of the year.

Global Lyme Alliance (GLA) is the leading 501(c)(3) dedicated to conquering Lyme disease through research, education and awareness. GLA has gained national prominence for funding the most urgent and promising research in the field, while expanding education and awareness programs for the general public and physicians. Learn more at GLA.org.

 

LDo’s Top 10 Lyme Research Questions

https://www.lymedisease.org/top-ten-lyme-priorities/

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Press release:

LymeDisease.org releases “Top 10 Lyme Disease Research Questions,” as federal government weighs options in fight against growing epidemic.

 

 

Suppression of Microscopy for Lyme Diagnostics – Professor Laane

https://on-lyme.org/en/sufferers/lyme-stories/item/276-interview-with-professor-laane-about-the-suppression-of-microscopy-for-lyme-diagnostics

Interview With Professor Laane About the Suppression of Microscopy for Lyme Diagnostics

Written by Huib Kraaijeveld

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Around 2003 the WHO encouraged research into microscopy as a direct test for the Borrelia spirochete, the pathogen causing Lyme disease. When a promising new and simple technique was discovered in 2013, it was however violently attacked. Not on the science itself, which is the normal procedure in science, but personally. Now retired professor microbiology Morten Laane was fired after he gave a lecture at a scientific conference in 2014. Moreover, his laboratory was closed down, the website of the scientific journal was hacked and the article disappeared. An exclusive interview.

“If experts treated airplane accidents in the same manner as an average medical scientist studies disease, I would book my next travel to the USA by ship.”

Professor Laane

Courtesy of Under Our Skin

Who is professor Laane?

Born in July 1940, in the small city of Toensberg, Morton Laane grew up during the second World War. “My mother visited her sister in the city of Bergen the ninth of april 1940 the day war broke out in Norway. They survived the severe attacks by the German warships. My mother travelled along the coast by a Norwegian local ship to the small city of Toensberg where the family lived close to the Oslo fjord. This was not a very smart idea, as several ships were attacked and destroyed by German submarines.

My father was in Finmark, the arctic part of Norway, together with a substantial number of Norwegian soldiers as a medical officer. When I was born, my mother, who had professional training in handling weapons, sat alone with a hidden gun in a small flat close to the German headquarter across the street. When the free artic part capitulated a couple of months after the start of the German invasion, he was first arrested by the Germans, later released and went back to Toensberg.

In 1947 my father showed me how to detect the Syphilis spirochete by very simple microscopy. Numerous sailors lived in this city known for its substantial commercial fleet. Back then, Syphilis infection was not uncommon in sailors.

My father had a small, old Leitz brass microscope of high quality. A tiny sample from the patient was mixed with an equal part of drawing ink on the glass slide made for microscopy. Drawing ink consists of extremely tiny black particles (coal). They do not penetrate into the bacteria. Normally they are almost invisible. Light pass through the unstained bacteria against a total black background.

This started my interest for microscopy. Later my father specialised in psychiatry. He had no use of his microscope and I got it as a gift. Looking back, almost everything in my life started as a hobby.

I became scientific assistent in general experimental genetics. My boss, Dr. Øistein Stromnaes worked with the fungus Penicillium. Nobody had seen its chromosomes before, but I discovered a simple method to count them in the light microscope.

So I was offered a research fellowship a the University of Bergen, I continued my research there and my PhD dissertation took place in 1971. The committee evaluated my theses as very good and suggested that I might have the qualifications of a personal professor position for life time and further develop new methods in genetics.

One of my discoveries regarding Penicillium brought me in contact with Lynn Margulis, then Lynn Sagan, wife of the famous Carl Sagan. Her research on cellular evolution and endosymbiosis led to the understanding that the energy-converting organelles, the mitochondria and chloroplasts, are actually bacterial symbionts living inside eukaryotic cells. This discovery earned her the reputation of being the most famous scientist in evolutionary biology after Charles Darwin.

My discovery was connected with her spirochete research, which focused on the symbiotic nature of the relationship between spirochetes and their hosts, in particular the noted ability of these bacteria to form dormant “round bodies” that are capable of reactivation. Nobody in the world knew more about spirochetes than Lynn.*

Later I discovered a somewhat similar structure in the slime mould (Physarum) which was much used for experimental research. I got in touch with Professor Ivar Giaever, a Nobel laureate in Physics and we cooperated for many years supervising Master and Ph.D. Students.”

Microscopic Lyme diagnostics

Microscopy is considered the Golden Standard in diagnostics for Syphilis. Given his background and expertise in microscopy, it made sense to Laane to try and find a method to detect the Borrelia in infected blood.

Laane: “My coworkers and I had published a series of papers in the Norwegian journal ‘Biolog’ regarding a problematic sheep disease called “alveld”. The papers contained unusual and spectacular images of possible toxic blue green algae (bacteria) that were suspected to be connected with this disease.

The Biological Institute then asked for cooperation regarding Lyme infections in order to compare microscopy and molecular tests. The Institute was responsible for administration regarding formal permissions to do medical research. It turned out that no reliable data were obtained from the molecular studies. The institute was responsible for this part. Microscopy showed, however, characteristic spirochetes in a number of patients together with other organisms such as Babesia.

The syphilis and Borrelia spirochetes share many properties. They cause permanent infections in humans which cause long-lasting, multi-stage diseases. They exist in more than one form – sometimes in the long spirochete form, but also in a round “cyst-like” form. The spirochete form can be made visible by simple methods and observed with a microscope.

Borrelia spirochetes in dry smears and in isotonic solutions appear as very thin cells, only 0.2 micrometers wide, and as very long – in the range of 50 to 100 micrometers. These are visible above the resolution limit for light microscopy – due to what we call light interference – by slight defocusing. In dry preparations, a focus error of more than 1/1000 mm renders them invisible under the microscope. In wet preparations, the cells swell substantially.

My colleague and I published the results of our part of the project due to our firm belief that microscopy is useful for detecting these infections. Beforehand we were assured by the Institute that formal permissions were granted by the health authorities. It turned out that the Institute, somehow had forgot to point out in a formal enough manner that a substantial part of the project included microscopy by us!

Our project leader was educated as a medical doctor, and had later became a biologist. He was also Head of the Institute to which the project was connected. We, my colleague and I, got a copy of the first page of the application accepted and signed by the Health authorities. We did not, unfortunately, see the entire application before it was too late, as the project description was incomplete in that it did not express without any doubts that about half of the project involved extensive use of microscopy to analyze samples.

The project leader knew of my cooperation with Oeystein Brorson, the extremely clever technician who was able to grow Borrelia from infected blood samples. We had agreed that the application should be written to state that extensive microscopy was needed for the project as a way to confirm the results of molecular tests.

The Institute received around 2 million euro (NOK 20 mln) and bought two DNA machines. The test project was thus an official Institute project, not an application by a group of three scientists. In hindsight, we should have asked to see the complete application, but we did not and went on the trust for our project leader. This turned out to be a mistake, as we were later blamed for not reading the regulations for medical research and additional legal papers.

The trust that caused us to not read the full application was labelled as “intention,” to mean we intended to subvert the regulations when we embarked on this project. This is simply not true.

Silenced for speaking

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

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

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

Laane: “As for being forbidden to speak, Waldemar Broegger, a Geology professor in the late half of the nineteenth century was forbidden to speak about Charles Darwin’s evolution theory. Lynn Margulis was originally ridiculed for her theories on the evolutionary origins of mitochondria and chloroplasts and later received numerous awards for this discovery. As both of these scientists were found to be right and later became famous, I feel I am in good company.

The 2013 publication of ‘A simple method for the detection of live Borrelia spirochaetes in human blood using classical microscopy techniques’ in the journal Biological and Biomedical Reports resulted in much opposition by conservative medical doctors and some scientists, most of whom had little or no microbiology experience working with spirochetes in a laboratory environment.

The article and research was criticized because the cellular objects we were observing were presumed to be “artifacts,” meaning objects of some other origin that just magically appeared in our samples. It’s extremely important to point out that all of our principal research was performed under highly controlled conditions, and our results were confirmed using more than one microscopy method. The critics of our work have yet to explain how these supposed “artifacts” we observed were able to reproduce and even move like spirochetes, which we observed them doing, and even more importantly, the critics have failed to explain how an “artifact” could possibly contain nucleic acids from Borrelia.

Yet, in that same year Dr. Alan MacDonald found out independently the same as me regarding how to detect chronic Lyme infections in human blood. Before this the assumed borrelia bacteria had been found by a Norwegian microscopist, who had an extremely ill son from Lyme.

MacDonalds arguments in these two videos (part one and part two) are brief, but very much to the point. He has later developed methods to detect single Borrelia bacteria direct in a microscope slide by exact molecular methods.

Oeystein Brorson is also mentioned by MacDonald. He was the researcher who grew all known strains of Borrelia in Norway, sent me samples and cooperated with Lynn Margulis and me, until he got disabled due to disease and had to leave his job.

After my lab was closed down, also the website of the scientific journal that published our article was so severely hacked that it stayed offline for three years. Once it came back up, our article had dissapeared.

The hacking of the Journal ‘Biological and Biomedical Reports’ seems to be done with a person knowing more than my closest enemies. And was someone with access to a quite advanced compilator system. Why this was done might well have been political or personal prestige.

I have never seen this happening on any topic in science before.”

Proof or propaganda?

In 2016 the Norwegian Health Department (FHI) published the study ‘Validate or falsify: Lessons learned from a microscopy method claimed to be useful for detecting Borrelia and Babesia organisms in human blood’. It stated,

“microscopy by the LM-method identified structures claimed to be Borrelia- and/or Babesia in 66% of the blood samples of the patient group and in 85% in the healthy control group”.

The TV2 reporter in the infamous documentary ‘Deceit or Borrelia’ misquoted this sentence by claiming that “it was proven that Dark Field microscopy produces 85% false positives”.

There are however suspicions that the Norwegian study was set up to discredit professor Laane’s work, using contaminated blood.

Laane:

“Officially, on their website The National Institute of Public Health claimed that the only known case of Babesia in Norway was a veterinarian that have had his spleen removed, and else that Babesia was unknown in the Norwegian population.

But I found a faked sample of Babesia. It was blood from a cow (or ox). It was mixed with human blood from a socalled control person and sent to me by mail.

Of course, this sample clotted impossible to see anything in the sample by microscopy except lumps of erytrocytes and fibrine fibers. If I had got the original sample unmixed, I would have found them at once. The FHI showed me a few images from a preparation they had made themselves, BEFORE it was mixed with human blood. The Babesia images there were the same as I found in several so-called control samples.

When I showed them, they looked a little worried – like school children not telling the truth to their teacher – but they would not admit that control samples contained Babesia merozoites.”

Image-1

Borrelia stained with the Mysterud-Laane method, blue color.

Image-3

Live biofilm of Borrelias developing in a mixture of blood and sodium citrate (this patient was tested positive also by molecular methods by American laboratory).

Serology

In the introduction to their 2016 article, the FHI authors also state that Lyme serology has a 70-90% sensitivity in the earliest stages and a sensitivity of almost 100% in later stages, which suddenly seems to become the new mantra in several countries. This seems to have been taken from a 2016 article written by IDSA and CDC authors, which was criticised for using circular logic.

Laane:

“A recent report presented in Norwegian newspapers claim that inaccurate science, especially in medical topics, is common. Norwegian Professor Oeyvind Oesterud has written several short articles in Aftenposten, Norway’s largest newspaper about science and popular science papers.”

He points out that false conclusions are favoured by both journals and media on the criteria that discoveries should be spectacular. Unless they are not, they are not accepted. Also the official evaluation system for research grants favours this. Many of these discoveries can not be repeated. But it generates much money for the universities.

Such scientists believe in accepted science. Any deviation shown by experiment may be interpreted as incorrect or false. One may wonder why they publish at all. Regarding deviating disease data they are often neglected – according to what the medical scientist was taught as a student by his professor. The deviating results are never studier further and ignored as “errors”. Up to about half of recent medical papers may contain this.

The result is delayed progress, sometimes with big consequences for severely ill patients. Patients that could be saved. Disease problems are very complicated and there is need for research listening to what both the patients tell and meticulous analysis of unexpected data.

As a final thought:

“Travel by modern airplanes is now very safe. If experts treated airplane accidents in the same manner as an average medical scientist studies disease, I would book my next travel to the USA by ship.”  Professor Laane

Exception or a pattern?

The European Union has recently provided a 2 million euro grant to a cooperation of three parties to develop a better Lyme test, as the current one is considered imperfect. At best.

So why are there several indication of the active repression and sabotage of new, better and direct ways to diagnose Lyme? Is professor Laane’s story unique or showing a doisturbing pattern?

“This never happened before on any topic in the history of science in Norway”, Laane said in his interview with the makers of ‘Under Our Skin Emergence’. Yet also in other countries scientists have been attacked for working on promising new and direct Lyme tests.

In 2014, French lab director Schaller was fined was fined with paying 280,000 euro to the government and was sentenced to nine months in jail. Also in 2014 the American Centers for Disease Control and Prevention (CDC) publicly attacked the credibility of Advanced Laboratory Services, which had developed a culture-based test for Lyme disease diagnosis. The basis for the CDC’s attack has since been proven wrong, yet the CDC has never retracted the article in which the errant criticism was made.

A direct and ‘no false-positive’ DNA test for Lyme was no longer made available to the general public, after its inventor was fired from a Connecticut hospital in 2010. And recently media attacked the tests of specialised labs in Germany, using undercover reporters and twisted patients’ stories, claiming they were either not ‘FDA approved’. As professor Ahern explained in her recent interview, none of the tests promoted by the CDC or your national Health agencies are ‘FDA approved’.

The next interview with Dr. Lee will look into what happened around the development and public accessibility of the DNA diagnostics mentioned above. It will be published very soon.

* Professor Laane and I will work together on a future article about the work of Lynn Margulis, as too few people seem to have heard of her important work.

About On Lyme

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Contact Huib:  https://huib.me/en/about/contact

 

 

Public Comment at TBI Working Group Meeting

 Dec. 2017  Approx 4.5 Min

Olivia (LivLyme Foundation)

  Dec. 2017  Approx 3.5 Min

Nicole Malachowski, active duty colonel  in U.S. Air force, found unfit for duty due to tick borne illness.

  Dec. 2017  Approx 3:45 Min

Attorney and Lyme patient Susan Green.

  Dec. 2017  Approx 3:50 Min

Jenna Luche-Thayer, advocate for the rights of the globally marginalized who has held senior advisory positions for the U.S. government in the United Nations.

 

 

HIV/AIDS Legacy Omnipresent at TBD Working Group Meeting

https://www.huffingtonpost.com/entry/hivaids-legacy-omnipresent-at-first-ever-tick-borne_us_5a2faf1ce4b0bad787126fd6  by David Michael Conner 12/12/17

HIV/AIDS Legacy Omnipresent at First-Ever Tick Borne Disease Working Group Meeting

Yesterday, the United States Department of Health and Human Services convened the first of a two-day preliminary meeting of a new Tick Borne Disease Working Group.

I have written extensively about Lyme disease for a couple of years now, beginning with a three-part series of articles that asked “Is Lyme Disease the New AIDS?” At the time, I wrote primarily LGBT- and entertainment-related stories for this blog, and I frankly suspected the essay would be sent off into the ether and not very widely read, given that my readership historically has been members of the LGBT community.

Within a couple of hours, I received an email from Raphael Stricker, a former president of the International Lyme and Associated Diseases Society (ILADS), who back in 2010 co-authored an article with LymeDisease.org’s Lorraine Johnson called “Lyme disease diagnosis and treatment: Lessons from the AIDS epidemic” in the English/Italian medical journal Minerva Medica. In 2014, Stricker and Johnson published a similarly themed article, “Lyme Disease: Call for a ‘Manhattan Project’ to Combat the Epidemic,” in the medical journal PLOS Pathogens.

After Stricker’s message came a trickle and then a veritable flood of messages about Lyme disease. The response overwhelmed me. I felt exposed because so much of what I had written related to my lifelong fears as a gay man who grew up in the 80s and 90s of the haunting Boogie Man of HIV/AIDS. In response to the story, I believe I received three complaints from HIV-positive people who felt that comparing anything to HIV was in poor taste, and especially something as minor (in their regards) as Lyme disease. I engaged in a lengthy debate with the most adamant of these people, and at the conclusion of our respectful conversation, she acknowledged that she knew little about Lyme disease, having extrapolated from the news stories she had read that it is a rare, easily cured illness, and that she would read more about it. That was more than enough for me; the only reason I wrote anything about Lyme disease at all was to draw attention to how harrowing it can be.

All the other responses—literally several hundred within a 72-hour period—came from severely ill people who begged me for help. Well, what could I do? I’m not a doctor. I’m not a medical researcher. I’m not a policymaker. I’m a writer and someone who has shared the surreal experience of late-stage Lyme disease. While I couldn’t provide any direct service to any of these people, I resolved to investigate and write about Lyme disease.

To say that the legacy of the AIDS epidemic was the pink paisley elephant in the room at yesterday’s Tick Borne Disease Working Group meeting would be an unthinkable understatement. Here’s a quick inventory of HIV/AIDS references:

  • The Working Group is organized by the HHS Office of HIV/AIDS and Infectious Disease Policy, Office of the Assistant Secretary for Health.
  • The Working Group’s designated federal officer, Richard Wolitski, “has worked for three decades as a manager, supervisor, and researcher studying HIV, STD and viral hepatitis risks and prevention.” Included with his biography among meeting handouts is a quote from Wolitski: “As someone living with HIV who experienced the early days of the epidemic before effective treatment existed, I empathize with many of these issues and ways that tick-borne disease has affected people and their families.”
  • During the meeting, expert presentations and public comments were facilitated by Dazon Dixon Diallo, president and CEO of SisterLove, Inc, a women’s AIDS and reproductive justice nonprofit. Throughout her comments, Dixon Diallo repeatedly invoked the AIDS crisis and explained her involvement with the ACT UP organization responsible for making noise about HIV/AIDS devastation that it could no longer be ignored. She told meeting attendees that Lyme patients need the same level of self-advocacy.
  • Present at the meeting was the well-known Lyme disease doctor Joseph Jemsek, a former HIV/AIDS specialist who changed his specialty from HIV/AIDS to Lyme disease because of the great number of patients who came to him after having been abandoned by other doctors. In part through being profiled in the feature documentary Under Our Skin and its sequel, Under Our Skin: Resurgence, Jemsek’s legacy is famous and famously controversial, as the North Carolina board of medicine and medical insurers have accused him of unprofessional conduct for providing individualized patient care involving prolonged courses of antibiotics rather than strictly observing CDC-endorsed Lyme disease treatment guidelines from the Infectious Diseases Society of America (IDSA), which mandates no antibiotics beyond 28 days. (Note: The CDC removed the IDSA guidelines endorsement from its website on December 1, 2017, explaining via email that “It has been over a decade since the IDSA guidelines, developed in 2006, were published. Additional published research further informs Lyme disease treatment. As a result, we’ve updated our website with treatment information that is more immediately helpful to health care providers and people with Lyme disease.” Federal regulations require that all medical guidelines must be reviewed against current scientific literature at least every five years. The federal National Guidelines Clearinghouse, which like CDC falls under the Department of Health and Human Services, un-listed the IDSA guidelines nearly two years ago because they were at the time five years overdue for review; when asked, the CDC offered no explanation for why it waited an additional two years to cease explicitly endorsing the IDSA guidelines.)
  • Among remote viewers far and wide was Fred Verdult, a Dutch HIV/AIDS and Lyme disease activist, who has told me that at this time his HIV is managed by a single pill, whereas he has to take about 40 pills to manage, as best as can be done today, Lyme disease. Verdult has been a prominent HIV/AIDS activist in Europe since the 1990s, and he has told me that he has encountered a great deal more resistance to Lyme disease activism than activism on behalf of HIV/AIDS patients.

A couple of years ago, comparing the phenomenon of Lyme disease to that of HIV/AIDS felt taboo—particularly as a gay man who was indoctrinated through public school, public service campaigns and media depictions to believe that AIDS was an almost certain death sentence to all gay men—or at least an omnipresent assassin who would betray every intimate relationship.

Today, incredibly, the HIV/AIDS crisis is the foundation upon which both Lyme disease denial and Lyme disease activism are building. To archive the stories I publish here and elsewhere, I co-opted a name recognizable to veritably everyone of a certain age, calling my web presence And the Band Plays On. (Sadly, And the Band Played On author Randy Shilts titled his book in past tense, assuming that the worst was behind us, and writing in his book’s introduction that the purpose of his written documentary was to prevent similar needless suffering from ever happening again. He succeeded in documenting the AIDS crisis, which has been a gift to us all; tragically, lessons have been taken from his history only selectively.)

HIV and Lyme disease are entirely different etiologically: HIV is a virus that suppresses the immune system over time, and Lyme is associated with one specific syphilis-like bacterium, Borrelia burgdorferi, that for some infected individuals is easily curable and for others—for reasons not at all to poorly understood, depending whom one asks—persists for years, decades or potentially indefinitely. HIV is best know as a sexually transmitted infection, but it can also be transmitted via shared needles, blood transfusion, and from mother to child. Lyme is known primarily to be transmitted by ticks—crucially, and usually overlooked, this transmission occurs often but at unknown rates along with one or more other potentially life-threatening tickborne infections—but some evidence has shown it also can be transmitted from mother to child, and many people have concerns that it potentially may be transmittable via sexual contact or blood transfusions…officials say that this has not been documented, and there appears to be little to no interest on the part of public health agencies in investigating Lyme disease pathology more intensively.

So biologically speaking, Lyme and HIV really have almost nothing in common.

AIDS is the result of infection by the HIV virus that has gone untreated for many years. AIDS results when the immune system is severely compromised, and in most cases when opportunistic infections do serious damage to the body. AIDS patients experience a nightmarish physical decomposition of their bodies. People who live with Lyme disease that has been undiagnosed and therefore not treated, or for whom treatment for unknown reasons was not successful, likewise find themselves inside of bodies that suddenly or slowly stop working properly, in many cases with neurological and even severe psychiatric manifestations. AIDS and late-stage or chronic Lyme do share some general commonalities—the specifics from a medical standpoint may differ greatly, but the patient toll can be similar.

People who develop AIDS generally die from AIDS.

People who develop late-stage or chronic Lyme most often do not die as a direct result (with exceptions)—yet suicide rates among these patients are high due to pain, suffering, disability, and common rejection by medical doctors, who insist that these people are either mentally ill or simply attention seeking.

Those of us who are old enough to remember the early 1980s will remember that AIDS jokes for a time were somewhat in vogue, thought to be in poor taste but nevertheless common before the pandemic scared the bejeezus out of the world. Lyme disease patients remain the subjects of derision and the punchlines of jokes, perhaps especially as told by those in the medical and public health professions.

The Poughkeepsie Journal, for example, in 2013 published a story disclosing internal emails from the National Institutes of Health officer responsible for overseeing clinical trials associated with Lyme disease in which he described Lyme disease patients to his CDC colleagues as “the Lyme loonies.”

Lyme patient and cartoonist David Skidmore turned the sour insult into lemonade (Yes, I resisted the lyme-ade pun!) by publishing Lyme Loonies, a collection of Far Side-style single-panel comics that illustrate the surreal absurdity of living with Lyme disease.

5a2fc02d1600002900cf0b1fDAVID SKIDMORE, LYME LOONIES

As with most of Skidmore’s illustrations, the above comic is an “inside joke” that many people who live with Lyme will get and few others would. In 2013, the CDC released a revision of its estimate of annual Lyme disease infections within the United States. Prior to 2013, the CDC stated that approximately 30,000 new cases of Lyme disease were acquired within the U.S. each year, based upon reports. In August of 2013, the CDC stated that it had reason to believe that Lyme is underreported at an estimated tenfold rate, with suspected actual infections numbering upwards of 300,000 per year. This “breaking of the dam” reflected Lyme patients’ realities and unleashed a tidal wave of cries for additional support.

Indeed, a rate of 30,000 annual infections classified Lyme as a “rare disease.” The estimate from 2013 instead classifies Lyme as one of the most common infectious diseases. One might expect this tremendous public health risk to be reflected in funding, but as Lorraine Johnson of LymeDisease.org presented to the Working Group yesterday, the “rare disease” legacy has stuck with Lyme, and Lyme disease is “funding orphaned.” CDC estimates fewer than 40,000 newly acquired HIV cases each year, and the NIH has invested $3 billion per year in researching HIV for many years; in stark contrast, CDC estimates over 300,000 newly acquired Lyme cases each year, and HIV invests an average of $25 million per year in researching Lyme. According to the analysis provided by Johnson, this funding level is reflective of “rare disease” status, which was once thought to apply to Lyme disease—but not for nearly five years now.

The first day of the Working Group made clear that parallels between the barely visible Lyme pandemic and the world-rocking AIDS pandemic are undeniable. It remains to be seen whether the Working Group’s deliberations and recommendations will significantly improve response by federal agencies including the CDC, responsible for control and prevention of all threatening diseases, and the NIH, responsible for funding research into all health issues.

People all over the world are watching and documenting these deliberations as they unfold. Chalk it up to another historic event brought to us by the year 2017. As the year winds down, I retain hope that human decency will help federal officials to do what is right for all people.

 

 

Tweets – Day 2 of TBD Working Group

https://www.lymedisease.org/second-meeting-tbd-working-group/  (Go here for Tweets)

Second meeting of TBD Working Group

Here’s what happened on the morning of day two, Tick-Borne Disease Working Group. This post will be updated later to include afternoon remarks.

 

Tweets on TBD Meeting Highlights

https://www.lymedisease.org/first-meeting-tbd/

First meeting of TBD working group highlights Lyme patient perspective

The first meeting of the federal Tick-Borne Diseases Working Group has now concluded in Washington DC. The emphasis was on the patient perspective. There will be a second meeting tomorrow (Tuesday, Dec. 12).

Click on link above for LymeDisease.org’s Lonnie Marcum tweets.   (Other videos and content will be posted as it becomes available.)

On Twitter, check out: @LymeNews.