When singer Joni Mitchell was hospitalized for a mystery ailment Morgellons disease, a lot of folks must have googled it. What is the Morgellons disease? This is a disorder which is characterized by crawling sensations on and under the skin. The body also has sores and fiber type filaments emerging from this. These strings are like wisps of a cotton thread associated with a bandage. But some say these are the result of infection in the skin.
What is Morgellons Disease?
Table of Contents
Morgellons is a disease where people feel their skin has something under it or trying to emerge from it. People who suffer from this disorder have all sorts of tiny objects such as fibers, granules, specks, worms, dots, sand, larvae and eggs and fuzzball coming out of their skin, leaving scars and lesions. Many scientific experts even categorize this as a psychological and mental condition rather than a physical problem. This mystery disease has research scientists puzzled.
Fibers in the body do not bear out forensic identification as mineral, animal or vegetable. The disease is a slow, unpredictable killer which attacks internal organs and leaves the person bedridden for days!
In the year 2012, the CDC published a study to assess what was going on as part of the USD 600,000 project launched in 2008 in response to interest and research on this disease. Researchers studied skin biopsy, urine, and blood sample to see if a cause could be isolated. This is why the medical condition was categorized as delusional in origin.
The condition itself is rare. Nearly 4 of 100 thousand people in a 3.2m population studied had this disorder. Only 115 people so far have been identified with this syndrome.
Signs and Symptoms
The symptoms of Morgellons disease are as follows:
- Skin Rashes
- Intense itching
- Feeling something is crawling under the skin(like insects moving or biting)
- Fibers, threads or black material coming onto the skin
- Massive fatigue
- Problems in concentration
- Loss of short term memory
- Open Sores
A delusion of infestation by parasitical agents or delusional parasitizes is another possible indication of this disease. While some medical experts say it is a real disease, others call it a mental delusion. Unexplained dermopathy or skin conditions that take place without reason or fiber disease are some of the other names.
Unpleasant skin sensations like bugs, burning or stinging sensations may take place. There is intense itching and skin sores heal very gradually and appear suddenly. Sores leave the skin red and some patients also report fibers stuck on their skin.
Apart from this, there is hair loss, pain in the joints and muscles, loss of teeth, sleep deficits and memory loss. This rare condition has been found in middle-aged white women and was once appearing in a cluster in CA. Diagnosis of Morgellons in London in another study from 2003 to 2008 found 18 patients with the disease, of which a majority were middle-aged and white.
What Researchers Know?
A link between Morgellons and infection with Borrelia spirochetes has been found by researchers. CDC researchers suggested that the condition was unexplained and without a known cause. Some health professionals also hold that the disease is a condition which research needs to provide evidence for. Another group believes it is a mental illness while a third does not acknowledge the disease until more is known about the condition. Another research found those with this disease also resist causes suggested by medical practitioners.
Morgellons has also been associated with Lyme disease. Other doctors have reported this disorder to be a psychotic condition. There is no established standard for diagnosing this disease. Most people suffering from this medical condition are assessed by medical professionals through history gathering of symptoms and asking about medical and psychological symptoms. Physical exams are ordered along with lab tests to assess appropriate diagnosing. Medical professionals may also carry out skin biopsies.
Coping & Management
Morgellons disease signs and symptoms can be extremely distressing. Even if certain healthcare professionals call this a mental condition, you definitely need treatment. For managing signs and symptoms, you need to have health care teams in place. Select a doctor who can help you with treatments, examine you and come up with options for curing the disease. Doctors will have very little to work with, so you need to be patient.
The doctor will look for known conditions and indicate a treatment course accordingly. Some doctors may also suggest mental health therapy and this can prove beneficial. It includes long-term mental health therapy for other associated conditions like anxiety and depression which can affect your body.
Research on Morgellons Disease: Learn More
A perplexing, disfiguring skin condition, this disorder is linked with spirochetal infections as well as tickborne diseases. This inadequately comprehended condition has a global distribution. Estimated self-reported cases were more than 14K in 2009. Since then, according to the Morgellons Disease Foundation in 2017, an increasing number of patients are suffering from this disorder. The distinguishing feature of Morgellons Disease is the spontaneous appearance of skin lesions that are ulcerative containing unusual filaments underneath, embedded in or projecting from the skin.
Characteristic filaments are microscopic and appear like textile fibers. These fibers are black, white or more vibrant colors like blue or red. Along with fiber production, some patients afflicted by this disease undergo formication, described as creeping, crawling, stinging and biting sensations. The symptoms of Morgellons Disease are not just on the skin, There are many symptomatic features like joint pain, fatigue, cardiac complications, neuropathy and cognitive difficulties as reported by Lyme Disease.
Research on Morgellons Disease by numerous groups over the years has yielded results that are conflicting. There are numerous studies reporting a link between Morgellons and Borrelia spirochetes infection. This is in direct contradiction to earlier studies by Centers For Disease Control & Prevention, concluding that conditions are not caused by parasites or infections.
A CDC study of 115 individuals with Morgellons, which CDC saw as unexplained dermatopathy showed that fibers in skin wounds were cotton. The report noted the condition is noted in middle-aged white women. Symptoms were found by the CDC to be similar to that of mental illness involving false beliefs about parasite infestation or delusional infestation.
Small research investigations have determined the cause and effect of treatment for Morgellons disease. But there is considerable debate about the diagnosis and treatment. Further investigation and research are required.
Common perspectives of health professionals towards Morgellons disease include thinking it is a specific condition, or signs or symptoms are caused by other conditions. But research is still being explored and a question of whether it is a delusion or an actual condition remains. While some individuals with these diseases have been dismissed as Morgellons disease, some other people report signs and symptoms of Morgellons disease typically resisting explanations of the condition.
Is Morgellons Disease a Delusion?
Some reports have promoted a delusional or psychiatric etiology for Morgellons Disease. There are a number of review articles or opinion pieces, according to NCBI NIH reports. These do not offer additional research or clinical evidence that Morgellons Disease is a delusional disorder. Common discussion themes are reiterated in research papers and case studies.
Common discussion themes include:
- Is Morgellons Disease a delusional disorder?
- Is Morgellons Disease a variation of delusional disorders?
- Is Morgellons Disease a fixed belief, despite lack of medical evidence, of being injected with inanimate objects or microscopic organisms? Do these patients have comorbidities with psychiatric conditions.
Some studies point to how mass delusional mental illnesses impact primarily middle-aged Caucasian or white women. Delusions of infestation are spread from one individual to another and transmitted by the internet, according to this research, which holds antipsychotic drugs are the treatment of choice. ECT is also an acceptable treatment for Morgellons Disease. The focus is on establishing confidence and trust helps individuals to take antipsychotic drugs. Morgellons works in dialogue with patients to establish rapport and trust.
NIH also cites studies reporting patients presented specimens to health care providers such as lint, hair, skin scrapings fiber etc. Some case studies indicated patients felt crawling sensations and thought they had bugs in their nose and ears. Such conditions as seborrheic dermatitis/eczema leading to sensations of crawling or formication. Sensations are felt inside the ears and nose and should be ruled out prior to diagnosing mental issues.
Patients also feel as though fibers are growing in the eye. Further, the feeling of formication has been seen by some researchers as sensory hallucinations. In cases where health practitioners did not look for filaments, it is not clear if the patient had lesions. Some reports mentioned skin lesions. Other studies even had cases where the skin was undamaged. According to NIH, 3 case studies in a meta-analysis reported projecting fibers or fibers embedded in the skin.
Case studies also varied in terms of pathogens, but the studies fell short of providing evidence for spirochetal infection. Many cases of suspected Morgellons disease, however, did not meet the DSM-V criterion for delusional disorders. Some studies did find patients were delusional and suffered from psychotic conditions like schizophrenia. One study even found patients with seizures and twitches. In another case, Morgellons Disease patients also had senile dementia.
So-called delusional disorders, according to some practitioners and researchers, could have cultural influences. Other comorbid conditions included vitamin B12 deficiency and thyroid disease. Another study had a case of Morgellons Disease with diabetes mellitus.
Patients in some cases were also taking psychoactive drugs. Antipsychotic medication was actually found to be curative in some cases. Treatment with antibiotics was found more successful in some cases. A Mayo Clinic review of 147 patients with Morgellons Disease found 81% had a history of psychiatric illness the most common being depression. Around 11 percent had a history of drug abuse and only 20 percent of the patients reported fibers within the skin.
Is Morgellons Disease an Infection?
In modern and recent times, Morgellons disease seems like a possible spirochetal infection. In fact, this infection was identified as a factor for the disease in 2006. This is when William Harvey, a doctor studied a group of seventy Morgellons Disease patients, infected with Bb spirochets, the causative agent of Lymes Disease. All except one of the patients were tested positively for Lymes Disease.
A further study attempted to examine Morgellons Disease characteristics in 25 patients who were self diagnosed. While patients met some criteria for delusional psychosis, the reasons and effects of symptoms were the exact opposite.
The infectious process was the key to symptoms of development. While the male to female ratio was 50:50, 23 of around 25 subjects had a previous psychiatric issue. Around 50 percent of the cases had sensations of movement, seventy percent had lesions or excoriations and fibers were present in 1/3rd of these clients. Central nervous systems, cardiac symptoms, autoimmune diseases, endocrine dysfunction, and low basic body temperature were encountered in the cohorts.
Lab proof of abnormalities commonly found ranged across anemia, high monocyte count, leukopenia, low immunity, elevated inflammatory marketers, serum calcium and globulin levels were also noted. Skin abnormalities included angiomas, excoriations, and filament or granule production. The need for a clear definition of Morgellons Disease was emphasized.
Another study analyzed subjects with the presence of unusual filaments and documented cases of such fibers projecting/embedded in the skin. Cutaneous fiber were also another discovery or finding. The presence of these findings was further explored. Researchers found 96.8 percent of the subjects had a clinical diagnosis of Lyme’s disease or positive Lyme disease tests through Western blot.
Many tested positive for coinfecting tick-borne illnesses and demographics of Lyme Disease and Morgellons Disease patients in the practices proved to be similar. Other critical findings in the cohort group were hypothyroidism and female predominance. There was also evidence of spirochetes playing a role in the evolution and triggering Morgellons Disease. It has also been compared to BDD/bovine digital dermatitis. This is a disease found in cattle caused by numerous treponeme species. BDD and Morgellons Disease were noted to be similar.
There was an unusual filament formed in cattle. Spirochetes were seen in both diseases. Histological examination further showed filaments in patient tissues were not textile fibers. These were found to be bio-filaments stemming from deeper epidermal layers, top dermal layers plus the root or base sheath of hair follicle and produced by epitheleal cells. Cutaneous filaments were primarily made of collagen and keratin as determined by histological studies.
These are produced by active fibroblasts and keratinocytes. The base of filament attachment to the cells of the epithelium shows continuous nucleation consistent with surrounding cells, indicating filaments are from human cells only. Histochemical staining tests of these skin sections containing embedded filaments found an amyloid compound. Further calcofluor white stain test results were negative and this proves the filaments were not from plant-based fibers like cotton or chitin from fungal cells/insect bodies.
Several independent researchers proved blue colored MD fibers were human-type hair and the blue color resulted from melanin-associated pigmentation. So Morgellons Disease patients were found to have fibers that were not textile. Filaments were hair-like extrusions. Some were very fine strands of human hairs. SEM microscopy tests of the fibers showed cuticular scaling akin to human hair and transmission electron based microscopy proved darkly stained/disorganized melanosomes found in human hairs. Further, researchers found the fibers were not self-planted either. The reason? They were deeply embedded within, into the skin, in a way that made it impossible for it to be pressed onto the skin externally by the patient.
These studies suggest there are abnormal collagen and keratin expressions. Along with the formation of abnormal cutaneous fibers, there were changes in the hair and fingernails. Deformed follicular bulbs were also found. Formation of multiple hair shafts in individual follicles and thickened keratin projections were also common. Doctors and researchers also noted Morgellons Disease lesions can start as folliculitis and evolve into ulcerative filamentous lesions. This indicates further evidence of keratin and collagen pathologies. This includes the formation of keratin projections, hardened comedo-like mass and deformed hair follicles and hairs.
Further, the keratin projections came from thickened follicular casts. While the outer surface was comprising keratin tissue, the inner part had collagen-rich tissue. The comedo type masses emerge from pores in a spontaneous way or when scratched and are described as sandy by patients. Patients often see this as seeds, eggs, parasites or even cocoon or anthropods mistakenly.
Further, this comedo like masses come embedded with collagen filaments or keratin and projecting filaments. When these form within a follicle or pore, they result in a tight wad of fibers. Follicular bulb pathologies and hair deformities also include hair or fiber growing into the dermis rather than coming out of the pore opening. Follicular sheaths also come with filamentous projections and may be seen as worms by patients. Further in cases where textile fibers were found, it is possible the fibers attach to sticky exudate or tangle into filamentous lesions. Salts were also found in the skin indicating human bioproducts.
Detection of Pathogens
Earlier on in the history of Morgellons Disease, a link between Morgellons Disease and Lyme’s Disease was reported, and further, Borrelia spirochetes have been detected in skin and bodily fluid specimens from patients with this disease. NIH reports a large study of 25 MD cases found Borrelia spirochetes in patient tissue and body fluid specimens. This was in dermatological specimens as well as cultures obtained from Morgellons Disease patients, using molecular, histopathological and microscopic detection methods. This study has also provided evidence for Borrelia DNA in MD specimens using PCR tests followed by DNA sequences. PCR tests further found Borrelia DNA in 13 Morgellons Disease specimens. Borrelia spirochetes were identified as Bb ss, though B. Miyamoto and B. garinii types were also noted.
Motile spirochetes were detected indicating Borrelia spp. PCR amplification is the key to the correct identification of these. Further, Borrelia spirochetes can replicate and invade inside fibroblasts and keratinocytes. These have been isolated in vitro from monolayers of fibroblasts and keratinocytes, despite antibiotic treatment. Some patients also gel-like secretions and these were found to contain spirochetes as well, as fibroblasts alter collagen and keratin gene expression resulting in filament formation that is unusual.
The key factor contributing to the evolution of MD lesions is infection with Borrelia spp. This is the pathogen most commonly detected in MD patients. Etiology of Morgellons disease is multifactorial. Factors like endocrine influences, genetic predisposition, and immune status as well as other infections which are tickborne play a role in this disease. Pathogens besides Borrelia spp have also been found in the tissue samples of patients.
This includes Bartonella henselae, Treponema denticola, and Heliobacter pylori. Further, 9 genes with significant sequence variation in Morgellons patients were also noted.
Classification of Morgellons Disease
A clinical classification scheme has been proposed for this disease:
- Early localized: These are lesions or fibers present for less than 3 months and localized to one area of the body.
- Early disseminated: Lesions or fibers were present for less than 3 months and concerning more than one body area.
- Late localized: Here the fibers or lesions are present for more than 6 months and localized to a single area of the body.
- Late disseminated: Here, lesions or fibers are for greater than 6 months and involve more than one area of the body.
Morgellons Disease: Debates and Controversies
One hallmark of Morgellons Disease is the presence of many colored fibers extended from the body sores. Mayo Clinic holds that filament’s composition is unknown. Some believe filaments are either self-inflicted or cotton particles clinging to open wounds. However, a 2013 study found blue and red filaments of the MD patients without a history of delusions or psychosis contained keratin, collagen and other proteins found naturally in the human body. This negates the view that filaments contain cotton or synthetic materials.
Newer studies indicate Morgellons could be more than a skin disorder with a strong mental illness factor. Emerging evidence indicates Morgellons Disease is a multisystemic illness affecting multiple organs and body parts. An underlying infection could be triggering the symptoms. Further, a 2016 article in the International Journal for General Medicine has reported how Borrelia spirochetes have been found in Morgellons disease patients tissue samples and skin. Primary species of Borrelia is the Borrelia Burgdorferi or Bb.
Bb is a spiral-shaped bacteria which can be borne in the body due to the bite of infected ticks. This bacteria is known to cause Lyme disease. Morgellons and Lyme patients share the same symptoms, but only some patients with Lyme’s disease will go on to develop MD.
Scientists are not clear why some individuals develop Morgellons and others do not. But the factors that come into play range across genes, hormones, immunity, and presence of additional infections. Medical experts still, however, debate whether this condition is a delusion or a disease.
What is the Controversy?
Morgellons Disease is controversial because it is not well understood. The causes are not known. As seen, research on this condition is limited and unverified. Along with this, Morgellons Disease is not classified as a true disease. For these reasons, Morgellons Disease is considered a mental illness. But recent studies have proved it is a true disease.
Besides the potential medication and the causes, another source of controversy is the fiber. Morgellons Disease is a psychiatric illness where fibers are from clothing, according to those who see it as a mental illness. For those who think it is an infection, the belief is fibers are produced in human epithelial cells.
The condition’s historical antecedents have led to controversy. Painful eruptions of rough, coarse hair were first noted in the 17th century. In 1938 skin crawling sensations were reported. The erupting skin fiber was reported in 2002. This was associated with crawling skin sensations. Due to the similarities of earlier emergence, it was known as Morgellons Disease. The number of cases was shown to increase in 2006, especially in CA. This initiated a massive CDC study. Results of the study were shown in 2012. These showed no underlying causes like bugs or infections. Since 2013, an association between MD and Bb is reported.
The appropriate medical cure for Morgellons Disease is not certain. There are 2 main treatment approaches, based on what the problem is. Doctors who conceive of Morgellons Disease as an infection require treatment with antibiotics. This may heal skin sores by killing bacteria. If there is stress, anxiety or other mental health issues, or one is coping with this disease, psychotherapy and psychiatric medicines are also offered. If one thinks the condition is caused by mental illness, the treatment is based on psychiatric medications or psychotherapy. Getting a psychiatric diagnosis when there is a skin disease can be traumatizing, too.
For boosting treatment efficacy, it would be advisable for patients suffering from Morgellons Disease to establish a trusting relationship with a doctor who takes the time to listen and offers open-minded, compassionate care. Trying to remain receptive about offering treatments including psychotherapists or psychiatrists if recommended to assist with symptoms of anxiety, depression or stress associated with dealing with a disease.
Lifestyle and home remedies are found on the net, but their effectiveness and safety remain questionable. Websites sell creams, pills, wound dressing, lotions and other treatments are expensive but of questionable benefit. Products should be given a wide berth until safety and cost-efficiency are assured.
Can Morgellons Disease Cause Complication?
It is quite normal to touch the skin when it is painful, uncomfortable or irritated. Some people spend so much time looking and picking at their skin that it impacts life quality and leads to anxiety, depression, isolation, and low self-esteem. Scratching or even picking sores and scabs, sensations of something crawling on the skin or erupting fibers can lead to massive wounds that are infected and just do not heal. When the infection moves into the blood-stream, sepsis can develop. It is a life-threatening infection treated with strong antibiotics.
All in all, MD patients should avoid touching open sores, scabs, and other broken skin. Applying appropriate dressing on open wounds to prevent infection. In the past, few doctors have come across this disease. But CDC has been steadily researching the condition.
CDC states conditions are not caused by infection or anything else in the environment. But other studies indicate Morgellons are linked to Lyme disease. Some patients with symptoms and signs of Morgellons have tested for bacteria causing Lyme disease. As per Morgellons researchers, there is no conclusive evidence either way. A 2010 study has found a potential link between hypothyroidism and Morgellons symptoms. But the questions about Morgellons Disease and debate around this disease remain constant.
A multi-system disease, Morgellons is more than just a condition of the skin. Many people suffering from this disease have reported gastrointestinal problems, neurology issues, and visual disturbance. Other health infirmities have also been associated with this condition. Research has sought to study if this is really a medical condition or a psychological one. Compassionate medical care is essential.
Morgellons is not recognized by those in the medical communities. Compassionate and caring medical treatment is a must to monitor a physical condition and monitoring any symptoms that might have developed. Morgellons is believed by many medical practitioners to not be a physical condition. Despite evidence to the contrary, some doctors have categorized it as psychological in origin. Education and detailed understanding provide deeper insights into how to treat this disease and manage its symptoms. It is fascinating that this disease has physiological symptoms and yet, it is categorized as a psychological disorder.
However, until the research actually unearths a cause, based on studies of body tissues and blood, the situation will continue to be one where medical professionals alternate between a psychological or physiological verdict as a cause for the disease. Singer Joni Mitchell vowed to make a difference to the awareness about this disease. So have researchers. However, much remains unknown including incidence, epidemiology, causes, the possibility of diagnosis and possible treatment options. This is what makes a big difference to what is known about the disease. Unless more is know, Morgellons will continue to remain a mysterious disease with few clues.
Education and detailed understanding provide deeper insights into how to treat this disease and manage its symptoms. It is fascinating that this disease has physiological symptoms and yet, it is categorized as a psychological disorder. However, until the research actually unearths a cause, based on studies of body tissues and blood, the situation will continue to be one where medical professionals alternate between a psychological or physiological verdict as a cause for the disease.