Coping With Morgellons Disease
Researchers and doctors often disagree about MD, and theres still a lot to discover about the disease. The controversy and limited understanding of the condition can make it especially hard to cope with it.
It can be helpful connect and share information with others who also have MD. Support groups and other resources can help you stay up to date on current research about MD, give you advice on how to manage it, and provide a community of people with similar experiences.
Support groups may be online or in-person, and a couple of examples include:
Lyme Disease May Be Associated With Genital Lesions And Morgellons Disease
Patients with Lyme disease may present with a variety of genital lesions and dermatologic manifestations including Morgellons disease, researchers reported in a study published in Clinical, Cosmetic and Investigational Dermatology.
The investigators described their findings in a 49-year-old woman who presented with vaginal itching of several weeks duration in early March 2015. Examination revealed an external vaginal and vulvar papular red rash, as well as skin loss, hypopigmentation, cracks, and ulceration in an area surrounding the vagina. She was treated with oral fluconazole for 3 days. Testing was positive for herpes simplex virus type 1, and she was treated with valacyclovir.
In June 2015, she developed ulcerated, punctate erosions with ragged edges on her back. Serologic and PCR testing demonstrated that antibodies toBorrelia burgdorferi sensu lato and Relapsing Fever Borrelia species and B burgdorferi DNA were detected. Vaginal Borrelia culture samples were sent for B burgdorferi PCR testing, and positive results were shown for Bbsl genes.
By December 2017, the patients skin condition and other symptoms had worsened, it was noted. Repeat serologic testing was negative for Ehrlichia chaffeensis but was positive for B burgdorferi, Babesia duncani, and Bartonella henselae.
The patient is currently receiving a cycling maintenance regimen of tinidazole and trimethoprim/sulfamethoxazole.
Reference
Evidence Of Genital Lesions And Morgellons Disease In A Lyme Patient
Although the erythema migrans skin rash is often considered a hallmark of Lyme disease, other skin manifestations of the tick-borne disease can happen as well.
In a study published in Clinical, Cosmetic and Investigational Dermatology, researchers describe the case of a woman with genital ulcerations, rashes and lesions associated with Lyme disease. Her rashes also had fibers characteristic of Morgellons disease.
As the article states:
Borrelia species have been linked to an emerging, controversial, globally occurring dermopathy commonly referred to as Morgellons disease . The key diagnostic criterion of this skin condition is the presence of unusual and often colorful filaments that lie under, are embedded in, or project from skin.
These thread-like cutaneous filaments may be white, black, or brightly colored in hues such as red, green or blue. In addition to the curious dermopathy, MD patients may also exhibit a variety of systemic symptoms consistent with LD including fatigue, joint pain, and neurological problems.
Molecular testing confirmed the presence of Borrelia DNA in both vaginal culture and blood serum specimens.
The research team included Marianne J. Middelveen of Calgary, Canada Jyotsna Shah, of IGeneX Laboratory in the US, and Dr. Raphael Stricker of San Francisco.
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Morgellonss Disease: More Taboo And Perhaps More Controversial Than Covid
The controversy around Lyme Disease diagnostics and treatment is bad enough, but a strange symptom of the infection is even more bizarre.
In this interview, I discuss the taboo and controversial nature of Lyme Disease in Canada with microbiologist .
Middelveen is a principle author and co-author of a number of peer-reviewed studies related to Lyme Disease and a strange symptom that can accompany the infection: Morgellons Disease.
Lyme Disease is described as a bacterial infection caused by a group of organisms that are spiral-shaped in culture, called spirochetes. They are from the genus Borrelia which is spread by both hard and soft-bodied ticks.
As a Lyme sufferer herself, Middelveen was unable to have her affliction recognized by anyone in the Canadian medical system due to what she refers to as a defective 2-tier test.
The issue is polarized in that one side believes that the stringent Canadian testing is effective and that persistent Lyme infection despite 2, 4 or 6 weeks of antibiotics does not exist.
Since each person can be affected by Lyme Disease in a unique, individual way, says Middelveen, it depends on what tissues that spirochete is infecting.
Typical afflictions include neurological, heart and joint problems.
Until that connection was determined, doctors disregarded these patients as delusional and continued to treat them with antipsychotic medication.
Touched By Lyme: Threading Your Way Through Morgellons Disease
What can cause weird things to pop out of your skinperhaps looking like colorful threads of blue, red, white or black? They may even look like seeds or feathers. All this may be accompanied by intense itching, scabs or lesions that dont heal.
If you go to a dermatologist, you have a high chance of being told that youre making up your symptoms. Delusions of Parasitosis or DOP is the label often slapped on the unfortunate souls who find themselves in this predicament.
Dr. Ginger Savely may know more about the unusual condition more properly called Morgellons disease than anybody else on the planet. In 2003, she was working as a nurse practitioner in Texas, developing an expertise in treating Lyme disease. As she explains in her new book Morgellons: The Legitimization of a Disease:
A dozen or so of my Lyme patients had mysterious, spontaneously appearing, slow-healing lesions with unusual colored filaments embedded in and/or extruding from their skin. Other doctors had diagnosed these patients with Delusions of Parasitosis but I was beginning to have some success treating them with antibiotics.I knew these patients were not delusional because I had observed the filaments myself using lighted magnification. I had tried to extract the embedded filaments but since they were firmly and deeply attached my attempts to remove them caused patients deep radiating pain.
She also discusses the state of research into the disease.
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Morgellons Disease Is Not A Delusion Says New Study
Press release from Charles E Holman Morgellons Disease Foundation, March 5, 2018:
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 tick-borne 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 .
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 of Austin, TX.
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.
While the blue coloration is caused by melanin pigmentation, the cause of red coloration remains a mystery.
Internet And Media Influence
People usually self-diagnose Morgellons based on information from the internet and find support and confirmation in online communities of people with similar illness beliefs. In 2006, Waddell and Burke reported the influence of the internet on people self-diagnosed with Morgellons: “physicians are becoming more and more challenged by the many persons who attempt self-diagnosis on-line. In many cases, these attempts are well-intentioned, yet wrong, and a person’s belief in some of these oftentimes unscientific sites online may preclude their trust in the evidence-based approaches and treatment recommendations of their physician.”
Dermatologist Caroline Koblenzer specifically faults the Morgellons Research Foundation website for misleading people: “Clearly, as more and more of our patients discover this site , there will be an ever greater waste of valuable time and resources on fruitless research into fibers, fluffs, irrelevant bacteria, and innocuous worms and insects.” A 2005 Popular Mechanics article stated that Morgellons symptoms are well known and characterized in the context of other disorders, and that “widespread reports of the strange fibers date back” only a few years to when the MRF first described them on the Internet. The Los Angeles Times, in an article on Morgellons, notes that “he recent upsurge in symptoms can be traced directly to the Internet, following the naming of the disease by Mary Leitao, a Pennsylvania mother”.
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Symptoms Of Lyme Disease
A circular or oval shape rash around a tick bite can be an early symptom of Lyme disease in some people.
The rash can appear up to 3 months after being bitten by an infected tick, but usually appears within 1 to 4 weeks. It can last for several weeks.
The rash can have a darker or lighter area in the centre and might gradually spread. It’s not usually hot or itchy.
The rash may be flat, or slightly raised, and look pink, red, or purple when it appears on white skin. It can be harder to see the rash on brown and black skin and it may look like a bruise.
Some people also get flu-like symptoms a few days or weeks after they were bitten by an infected tick, such as:
- a high temperature, or feeling hot and shivery
- headache
- tiredness and loss of energy
Some people with Lyme disease develop more severe symptoms months or years later.
This is more likely if treatment is delayed.
These more severe symptoms may include:
- pain and swelling in joints
- nerve problems such as pain or numbness
- heart problems
- trouble with memory or concentration
Histological Examination Dermatological Specimens
All patients were clinically diagnosed with MD by a healthcare provider based on the presence of skin lesions and/or skin crawling sensations with intradermal filaments that were visible with a hand-held microscope, as described in previous publications . The dermatological material that met our diagnostic criterion was mainly in the form of calluses embedded with filaments, many of which were blue or red. MD calluses were easily removed from patients as they were composed of thickened skin that has separated from the dermis at the stratum basale. Histological examination of cross sections revealed epidermal layers from the stratum basale to the stratum corneum. In MD calluses, collagen and keratin filaments could be seen distributed throughout the epidermal tissue or projecting down from the stratum basale towards the dermis.
Dermatological specimens consisting of callus material from the following patients were submitted for histological sectioning and examination: 1-4, 8, 10-13, 15, 16, 18-20, 22, 23, 25. Biopsy sections were submitted for histological examination for patient 24. Sections of hair follicular bulbs and attached follicular sheaths rather than sectioned calluses were submitted for patient 5. Samples from patients 6, 7, 9, 14, 17 and 21 were used for culture and/or PCR detection only.
Table 2 Microscopic examination of dermatological tissue sections with Dieterle or Warthin Starry silver nitrate stain and anti-Bb polyclonal immunostain
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Staging Of Morgellons Disease Holds Promise Of Better Treatments
Morgellons disease is a controversial illness associated with Lyme disease. It is caused by infection with a type of corkscrew-shaped bacteria known as a spirochete.
A new study describes a staging system for this mysterious skin disease based on medical experience with syphilis, another spirochete-related infection. The study was published in the prestigious journal Clinical Cosmetic and Investigational Dermatology .
The key diagnostic feature of Morgellons disease is the presence of unusual, often colorful filaments found in skin lesions. These characteristic fibers are sometimes incorrectly identified as self-implanted textile fibers in delusional patients.
Earlier studies have shown that the filaments are composed of human proteins related to infection with the spirochete that causes Lyme disease, Borrelia burgdorferi. The new study points to similarities between Morgellons disease and the skin pathology seen with Treponema pallidum, the spirochete that causes syphilis.
Morgellons Found To Be Closely Linked With Lyme Disease
Researchers say Morgellons disease is associated with Lyme disease, and the colorful filaments protruding from the skin are comprised of keratin and collagen.
Morgellons disease has been a puzzle to practitioners for many years. Sufferers exhibit colorful filaments that protrude from their skin or nestle directly underneath it, resembling textile fibers in their texture and hue. Frequently, this unusual presentation led physicians to doubt that the filaments could originate from inside the skin and sufferers were traditionally thought to be delusional. Now, researchers associated with the International Lyme and Associated Diseases Society have examined the results of several recent studies and concluded that not only do Morgellons filaments originate inside the skin, but the disorder is also closely linked to Lyme disease.
According to Raphael B. Stricker, MD, a San Francisco physician and ILADS member, histological studies demonstrate that the filaments are comprised of keratin and collagen, proteins found in body tissues. These proteins appear to arise from cells located in multiple layers of the skin along with those of hair follicle roots some of the fibers are actual hairs. Staining the different colored filaments has revealed them to be human tissue and dispelled any notion that the fibers contain materials normally found in clothing or other substances.
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The Chance Of Getting Lyme Disease
Not all ticks in England carry the bacteria that causes Lyme disease.
But it’s still important to be aware of ticks and to safely remove them as soon as possible, just in case.
Ticks that may cause Lyme disease are found all over the UK, but high-risk places include grassy and wooded areas in southern and northern England and the Scottish Highlands.
Ticks are tiny spider-like creatures that live in woods, areas with long grass, and sometimes in urban parks and gardens. They’re found all over the UK.
Ticks do not jump or fly. They attach to the skin of animals or humans that brush past them.
Once a tick bites into the skin, it feeds on blood for a few days before dropping off.
How To Avoid Tick Bites
To reduce the chance of being bitten:
- cover your skin while walking outdoors and tuck your trousers into your socks
- use insect repellent on your clothes and skin products containing DEET are best
- stay on clear paths whenever possible
- wear light-coloured clothing so ticks are easier to see and brush off
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Patients And Specimen Collection
Adult participants from across North America either accessed the study via the Charles E. Holman Morgellons Disease Foundation or contacted the researchers independently. Informed consent for specimen collection and study participation was obtained from each patient, and the identities of participants were kept strictly confidential. The study protocol was approved by the Western Institutional Review Board , Puyallup, WA, USA. Additional written consent to publish data resulting from this study was obtained for each patient. The study was conducted in accordance with the Declaration of Helsinki.
Participants were included in the chronological order in which they volunteered. All volunteers were included providing they met the diagnostic criterion for MD: embedded or projecting white, black or colored cutaneous filaments documented by a healthcare professional. Prior testing for LD or other tick-borne illnesses was not required nor was that information provided to the researchers. Patient samples without demographic information were sent to the laboratory conducting the testing, and this information was only added to the data and analyzed after laboratory testing had been concluded. Participants who had lesions containing thickened callus material were invited to collect and submit skin specimens for further evaluation using histological sectioning and special staining for Bartonella spp.
What Are The Symptoms Of Morgellons Disease
The primary symptoms of MD are multicolored fibers appearing under the skin or emerging from sores that are slow to heal. Because the fibers can be red, green, blue, white, or black, they may look like microscopic fibers from clothing.
Another common symptom is the feeling of burning, stinging, or crawling on the skin. Additional symptoms of MD include:
The lack of understanding about MD has led to controversy around the condition. Both psychological and infectious causes have been proposed. The fibers themselves are also controversial.
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Ongoing Symptoms Of Lyme Disease
A few people who are diagnosed and treated for Lyme disease continue to have symptoms, like tiredness, aches and loss of energy, that can last for years.
These symptoms are often compared to fibromyalgia and chronic fatigue syndrome.
It’s not clear why this happens to some people and not others. This means there’s also no agreed treatment.
Speak to a doctor if your symptoms come back, or do not improve, after treatment with antibiotics.
The doctor may be able to offer you further support if needed, such as:
- referral for a care needs assessment
- telling your employer, school or higher education institution that you require a gradual return to activities
- communicating with children and families’ social care
Page last reviewed: 05 July 2021 Next review due: 05 July 2024
Treatment Of Morgellons Disease
There is no singular approach to the treatment of Morgellons that will work for everyone. Realistically, theres a lot of trial and error to figure out what strategies will be most effective for the illness.
A good treatment approach focuses on comprehensive ways to improve multi-systemic symptoms and address pathogens such as borrelia and coinfections like bartonella and babesia. Treatment protocols may also include topical medications to address infections of skin lesions or referrals to mental health professionals if psychiatric manifestations of the illness occur.
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