Skin Deep: The Battle Over Morgellons
Published on May 16, 2019
Published on May 16, 2019
In December of 2018, the Tick-Borne Disease Working Group released its first report to Congress regarding the epidemic of emerging disease. This article gives a basic rundown of relevant statements contained in the first of three TBDWG reports to Congress.
The TBDWG is a fourteen-member panel of infectious disease professionals called together in light of the 21st Century Cures Act and organized by the Department of Health and Human Services. This group is tasked with reviewing the current science and treatment progress of the various tick-borne diseases and reporting their findings to Congress every two years in December. December 2018 saw the first report, there will be a second report in December 2020 followed by final recommendations at the end of 2022.
At the start of the first TBDWG report it is stated,
“While most Lyme disease patients who are diagnosed and treated early can fully recover, 10 to 20% of patients suffer from persistent symptoms, which for some are chronic and disabling. Studies indicate that Lyme disease costs approximately $1.3 billion each year in direct medical costs alone in the United States.”
Sounds promising, but what about the insensitive testing methods? What does the report say about early diagnosis and why there are so many false negatives? Amazingly the report addresses these concerns directly, “Today, available diagnostic tests can be inaccurate and complex to interpret, especially during the earliest stage of infection when treatment is most effective. Unlike in other infectious disease settings, tests to directly measure the presence of the infecting organism, such as cultures or tissue biopsies, are not available for some tick-borne diseases such as Lyme disease. This leaves physicians without the tools needed to diagnose; and without an accurate diagnosis, it is challenging for physicians to provide early treatment.”
Wow! With that kind of admission about standard Lyme testing, you would expect similar honesty regarding other controversial aspects of Lyme disease. What about congenital transmission then, what does this report state about Lyme infecting unborn children?
From the report, the sole instance of recognition appears on page 53 in the chapter titled “Treatment”. It states,
“Pregnancy: Transplacental infection of the human fetus has been recognized for relapsing fever borreliosis, as well as Lyme disease, babesiosis, and certain arthropodborne flaviviruses. Pregnancy poses particular challenges for treatment because few antimicrobials have been approved and are safe to use during pregnancy. Additional research into appropriate treatment options are needed.”
It’s right there in black and white and from the red, white and blue state of American Freedom and Democracy! Why then would the World Health Organization remove such an apparent consideration from its medical coding system?
But what about Morgellons specifically? What does this report elicit about those afflicted with this particular skin manifestation that’s been thoroughly associated with tick-borne disease?
Keyword analysis of the report reveals seventeen instances of the term “skin” speckled throughout. The first instance is regarding frequent skin lesions that occur early in the infectious process. It continues to state that with early treatment the better prognosis can be achieved. While that’s great and everything, what else does it say about skin lesions that may be particularly relevant?
The next two instances of “skin” in the report occur regarding utilizing skin agents to deter ticks from attaching to the skin. The following six instances regard the characteristic erythema migrans bullseye rash and that relates to early diagnosis. This section is interesting in that it elaborates on the many kinds of erythema migrans that can occur and gives a visual presentation of each. Still, none of these erythema migrans look anything at all like Morgellons ulcerations.
The tenth and eleventh occurrence of the term “skin” in the first of three TBDWG reports to Congress are of interest as they describe Figure 10 in the report, “Skin Rashes of Tick-Borne Diseases”. Figure 10.a depicts Tularemia which is a Tick-Borne Infection (TBI) that produces lesions in the skin. The difference between Tularemia and Morgellons, however, is Tularemia does not produce collagenous fibers, which are the defining characteristic of Morgellons disease.
Occurrence twelve describes how skin rashes present early in dissemination and appears alongside a figure that demonstrates how the IgM response falls off over time, leaving a patient with primarily elevated IgG antibodies.
“Skin” appears for the thirteenth and fourteenth time in the report regarding the challenges of diagnosing skin rashes in individuals with darker skin tone. This section stresses the importance of TBI education in areas where Lyme is not considered endemic, as a lapse in diagnosis can result in severe patient complications.
The fifteenth and sixteenth use of the term “skin” appear alongside information regarding how the disease disseminates from the skin to other organs of the body in the sixth chapter which details treatment. This section is completely fascinating, eliciting how infected patients are more susceptible to re-infection and how mice vaccinated against influenza produced a suppressed immune response to the flu in light of their infection with Borrelia burgdorferi.
The final instance of the term “skin” in the TBDWG report to Congress is alongside recognition of NIAMS, the National Institute of Arthritis and Musculoskeletal and Skin Diseases. We went to the NIAMS website and was not at all surprised to produce a lack of search results for the term “Morgellons“.
The first TBDWG Report is surprising. It’s not at all littered with propaganda and falsehoods that plague our esteemed medical establishments. Besides not directly addressing Morgellons the report does reveal several controversial facts about Lyme disease that many in official health agencies currently disagree about. This is a refreshing move in what could be considered a positive direction.
This report did not try to appease the establishment, but at the same time, it doesn’t explore the full extent of the Lyme pandemic. The fact is the fourteen members of the TBDWG have two more reports to produce, and we know for certain many of them are aware of the significance Morgellons has relating to their efforts.
If a grade was to be applied to the first report it feels like this initial effort deserves a solid B+.
Embedded cutaneous blue and white filaments @ 50X magnification.
“This paper shows that most studies of Morgellons disease are appreciably flawed, and the disease does not meet criteria for a delusional disorder in accordance with the guidelines of the APA,” said Casey-Holman.
When does a “delusion” become reality? That question is addressed in the review paper entitled “History of Morgellons Disease: From Delusion to Definition” written by microbiologist Marianne Middelveen from Calgary, Canada, together with nurse practitioner Melissa Fesler and internist Raphael Stricker, MD from Union Square Medical Associates in San Francisco, CA.
Morgellons disease is a bizarre skin condition associated with tickborne disease. It is characterized by disfiguring skin lesions containing multicolored filaments, often accompanied by fatigue, joint and muscle pain and neurological problems. Morgellons disease is a controversial topic in medicine. The controversy surrounding this dermatological condition is explored in the February 2018 report published in the prestigious medical journal Clinical Cosmetic and Investigational Dermatology (https://doi.org/10.2147/CCID.S152343).
“This paper compares the evidence of an infectious etiology for Morgellons disease to the evidence that it is a purely delusional illness,” says Cindy Casey-Holman, director of the Charles E. Holman Morgellons Disease Foundation (CEHMDF) of Austin, TX. To be diagnosed with a delusional disorder according to the guidelines of the American Psychiatric Association (APA), a patient’s symptoms must meet specific criteria. “This paper shows that most studies of Morgellons disease are appreciably flawed, and the disease does not meet criteria for a delusional disorder in accordance with the guidelines of the APA,” said Casey-Holman.
The CEHMDF has funded a number of research studies illuminating the origin of the colorful skin filaments and showing that Morgellons pathology is the result of an infection. Some mainstream medical practitioners claim that the microscopic colorful fibers are self-implanted textile fibers, or that patients think they are infested by bugs or worms. In fact the fibers found in Morgellons skin lesions are not textile fibers, nor are they bugs or worms. They are human biofibers composed of the proteins collagen and keratin and produced by skin cells. While the blue coloration is caused by melanin pigmentation, the cause of red coloration remains a mystery.
“Many doctors are reluctant to accept evidence that challenges the status quo,” says Casey-Holman. “We need doctors to objectively examine all the evidence, so that patients can get treated for the underlying infection.”
“Morgellons is not a mystery. A plausible explanation is supported by scientific evidence. The fibers are human structural proteins,” explains Fesler. “It results from an aberrant response to the presence of tickborne pathogens.” The study also highlights the presence of brain scan lesions in some Morgellons patients, confirming the non-delusional nature of the disease.
Morgellons skin lesions are associated with Lyme disease and other tickborne illnesses.
“To treat the skin condition one must first treat the underlying infection,” says Dr. Stricker. Several laboratories have detected live Lyme bacteria directly in Morgellons skin tissue provided that the correct detection methods are used. “As more laboratories confirm detection of pathogens from Morgellons patients, the evidence becomes more difficult to ignore,” states Middelveen. “Eventually this association will be recognized in mainstream medicine.”
About the Charles E. Holman Morgellons Disease Foundation:
The Charles E. Holman Morgellons Disease Foundation, based in Austin, TX, is a 501(c) (3) nonprofit organization committed to advocacy and philanthropy in the battle against Morgellons disease. Director, Cindy Casey-Holman, RN, leads the foundation, named for her husband, Charles E. Holman, a pioneer in the fight against Morgellons disease. Currently there is no public funding and very limited private funding to support research for this disease, and the CEHMDF is the recognized authority and primary funding source for Morgellons disease medical/scientific research. Donations are tax deductible in the US. To learn more about Morgellons disease go to: http://www.MorgellonsDisease.org
Morgellon’s research: http://thecehf.org/morgellons-disease-research.html
Published 9 February 2018 Volume 2018:11 Pages 71—90
Marianne J Middelveen,1 Melissa C Fesler,2 Raphael B Stricker2
Morgellons disease (MD) is a skin condition characterized by the presence of multicolored filaments that lie under, are embedded in, or project from skin. Although the condition may have a longer history, disease matching the above description was first reported in the US in 2002. Since that time, the condition that we know as MD has become a polemic topic. Because individuals afflicted with the disease may have crawling or stinging sensations and sometimes believe they have an insect or parasite infestation, most medical practitioners consider MD a purely delusional disorder. Clinical studies supporting the hypothesis that MD is exclusively delusional in origin have considerable methodological flaws and often neglect the fact that mental disorders can result from underlying somatic illness. In contrast, rigorous experimental investigations show that this skin affliction results from a physiological response to the presence of an infectious agent. Recent studies from that point of view show an association between MD and spirochetal infection in humans, cattle, and dogs. These investigations have determined that the cutaneous filaments are not implanted textile fibers, but are composed of the cellular proteins keratin and collagen and result from overproduction of these filaments in response to spirochetal infection. Further studies of the genetics, pathogenesis, and treatment of MD are warranted.
More on Morgellons: https://madisonarealymesupportgroup.com/2016/10/27/research-on-morgellons/
The Charles E. Holman Morgellons Disease Foundation has designated February as Morgellons Awareness Month.
Morgellons, which appears to have a connection to Lyme disease, is a controversial diagnosis in the medical world. Sufferers are often dismissed by their doctors as being delusional.
According to the foundation, Morgellons Disease (MD) is a multi-system illness uniquely characterized by the formation of unusual fibers within the skin. MD is a debilitating, painful and life impacting condition consisting of slow-healing skin lesions, overwhelming fatigue, GI disturbances and an array of neurological deficits. Patients with Morgellons may shed unusual appearing particles from the skin described as fibers, sand or seed-like, black specks, or crystalized particles.
Holman Foundation President Cindy Casey and others from the organization have been heavily involved with a documentary film project (still being edited) called Skin Deep: The Battle Over Morgellons. You can watch a trailer of the film here:
The 11th Annual Medical-Scientific Conference on Morgellons will be held on April 14-15, 2018 at the Wyndham Garden Hotel in Austin, Texas. This conference brings physicians, scientists, nurses, patients and their families together for 2 days of presentations. The very latest in research and treatment of Morgellons will be presented.
More on Morgellons: https://madisonarealymesupportgroup.com/2016/12/10/morgellons-in-dogs/
Canine Filamentous Dermatitis Associated with Borrelia Infection
Background: Although canine clinical manifestations of Lyme disease vary widely, cutaneous manifestations are not well documented in dogs. In contrast, a variety of cutaneous manifestations are reported in human Lyme disease caused by the spirochete Borrelia burgdorferi. A recently recognized dermopathy associated with tickborne illness known as Morgellons disease is characterized by brightly-colored filamentous inclusions and projections detected in ulcerative lesions and under unbroken skin.Recent studies have demonstrated that the dermal filaments are collagen and keratin biofibers produced by epithelial cells in response to spirochetal infection. We now describe a similar filamentous dermatitis in canine Lyme disease. Methods and Results: Nine dogs were found to have cutaneous ulcerative lesions containing embedded or projecting dermal filaments. Spirochetes characterized as Borrelia spp. were detected in skin tissue by culture, histology, immunohistochemistry, polymerase chain reaction (PCR) and gene sequencing performed at five independent laboratories. Borrelia DNA was detected either directly from skin specimens or from cultures inoculated with skin specimens taken from the nine canine study subjects. Amplicon sequences from two canine samples matched gene sequences for Borrelia burgdorferi sensu stricto. PCR amplification failed to detect spirochetes in dermatological specimens from four healthy asymptomatic dogs. Conclusions: Our study provides evidence that a filamentous dermatitis analogous to Morgellons disease may be a manifestation of Lyme disease in domestic dogs.
“Similar skin lesions have previously been reported in bovine digital dermatitis, an infectious disease of cattle.
Most of the owners of the study dogs were healthy and were not familiar with Morgellons disease or Lyme disease; however, two of the owners also had Morgellons disease. “In those cases, we do not have evidence of contact transmission from human to animal or animal to human,” says Dr. Stricker, “it may be that both owner and dog were exposed to the same disease vector.”
“The finding of skin lesions similar to Morgellons disease, first in cattle and now in dogs, confirms that the skin disease is not a delusion, as some have maintained,” said Ms. Middelveen. “We need to learn much more about this mysterious skin condition.”
About the Charles E. Holman Morgellons Disease Foundation:
The Charles E. Holman Morgellons Disease Foundation based in Austin, TX, is a 501(c) (3) nonprofit organization committed to advocacy and philanthropy in the battle against Morgellons. Director, Cindy Casey-Holman, RN, leads the foundation, named for her husband, Charles E. Holman, a pioneer in the fight against MD. The CEHMDF is the recognized authority and primary funding source for Morgellons Disease medical-scientific research. There are neither grants, nor any other public or private funding to support research for Morgellons. Donations are tax deductible in the US. To learn more about Morgellons disease go to http://www.MorgellonsDisease.org“.
For more information on Morgellons: https://madisonarealymesupportgroup.com/2016/06/17/morgellons-believe-it/
Morgellons: The legitimization of a disease: A Factual Guide by the World’s Leading Clinical Expert
“We have come a long way against great odds on our journey to legitimize Morgellons disease. Dr. Ginger Savely paved the earliest path on the rockiest road to make this progress possible. This book provides long-awaited answers to the vital questions being posed by thousands of patients and clinicians about this unthinkable disease. In reading Dr. Savely’s poignant narrative you will learn to separate fact from myth and rumor from reality. This book will be a valuable resource for Morgellons patients and their families and friends and will serve as a guide for health care providers who are open-minded and committed to the health of their patients”.
From the Foreword by Cindy Casey, RN, Director of the Charles E. Holman Morgellons Disease Foundation
For more information on Morgellons and the link to Tick Borne Infections, see: https://madisonarealymesupportgroup.com/2016/10/27/research-on-morgellons/
Morgellons Disease – Video abstract 116608 Uploaded on Sep 28, 2016
Video abstract of review paper “Morgellons disease: a filamentous borrelial dermatitis” to be published in the International Journal of General Medicine by Middelveen and Stricker.
Marianne J Middelveen, Raphael B Stricker
International Lyme and Associated Diseases Society, Bethesda, MD, USA
Morgellons disease: a filamentous borrelial dermatitis
Abstract: Morgellons disease (MD) is a dermopathy characterized by multicolored filaments that lie under, are embedded in, or project from skin. Although MD was initially considered to be a delusional disorder, recent studies have demonstrated that the dermopathy is associated with tickborne infection, that the filaments are composed of keratin and collagen, and that they result from proliferation of keratinocytes and fibroblasts in epithelial tissue. Culture, histopathological and molecular evidence of spirochetal infection associated with MD has been presented in several published studies using a variety of techniques. Spirochetes genetically identified as Borrelia burgdorferi sensu stricto predominate as the infective agent in most of the Morgellons skin specimens studied so far. Other species of Borrelia including Borrelia garinii, Borrelia miyamotoi, and Borrelia hermsii have also been detected in skin specimens taken from MD patients. The optimal treatment for MD remains to be determined.
Morgellons disease – Video abstract: 39017 Published on Jan 8, 2013
Video abstract of original research paper “Characterization and evolution of dermal filaments from patients with Morgellons disease” by Middelveen MJ, Mayne PJ, Kahn DG, et al.
Marianne J Middelveen,1 Peter J Mayne,1 Douglas G Kahn,2 Raphael B Stricker1
1International Lyme and Associated Diseases Society, Bethesda, MD, USA; 2Department of Pathology, Olive View–UCLA Medical Center, Sylmar, CA, USA
Characterization and evolution of dermal filaments from patients with Morgellons disease
Abstract: Morgellons disease is an emerging skin disease characterized by formation of dermal filaments associated with multisystemic symptoms and tick-borne illness. Some clinicians hypothesize that these often colorful dermal filaments are textile fibers, either self-implanted by patients or accidentally adhering to lesions, and conclude that patients with this disease have delusions of infestation. We present histological observations and electron microscopic imaging from representative Morgellons disease samples revealing that dermal filaments in these cases are keratin and collagen in composition and result from proliferation and activation of keratinocytes and fibroblasts in the epidermis. Spirochetes were detected in the dermatological specimens from our study patients, providing evidence that Morgellons disease is associated with an infectious process.
Marianne J Middelveen, Raphael B Stricker
International Lyme and Associated Diseases Society, Bethesda, MD, USA
Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease
Abstract: Bovine digital dermatitis is an emerging infectious disease that causes lameness, decreased milk production, and weight loss in livestock. Proliferative stages of bovine digital dermatitis demonstrate keratin filament formation in skin above the hooves in affected animals. The multifactorial etiology of digital dermatitis is not well understood, but spirochetes and other coinfecting microorganisms have been implicated in the pathogenesis of this veterinary illness. Morgellons disease is an emerging human dermopathy characterized by the presence of filamentous fibers of undetermined composition, both in lesions and subdermally. While the etiology of Morgellons disease is unknown, there is serological and clinical evidence linking this phenomenon to Lyme borreliosis and coinfecting tick-borne agents. Although the microscopy of Morgellons filaments has been described in the medical literature, the structure and pathogenesis of these fibers is poorly understood. In contrast, most microscopy of digital dermatitis has focused on associated pathogens and histology rather than the morphology of late-stage filamentous fibers. Clinical, laboratory, and microscopic characteristics of these two diseases are compared.