Morgellons Disease Support Group
Morgellons or Morgellons disease is a controversial name for an alleged polysymptomatic syndrome characterized by patients finding fibers on their skin, which they believe are related to other symptoms, including intense itching, skin lesions, as well as a wide range of other chronic symptoms. These symptoms are occasionally accompanied by the belief in an infestation by...
I have a project on Morgellons I'm hoping to finish someday. I've already posted some of the information in my thread "Anyone Heard of This?" - but my life is in turmoil, I'm not very well, and my memory isn't good so I'm having to go over everything all over again already.
As I do, I continue to be hugely impressed with the research done by Virginia Savely, Ron Wymore, and Marianne Middelveen especially, and by some of the papers they've published. although I admit that even I was a bit skeptical of some of it at first.
I'm also very impressed with the amount of focus they've put on specific infections associated with Morgellons, and I sympathize very much if only because I have at least one diagnosis myself that has been consistently associated with spirochetes, although my skin lesions don't seem to have any of the characteristic Morgellons features.
I know what a hard time it seems to be to get doctors to take this disease seriously, so what I'm wondering is if anyone has ever tried showing any of that research to a doctor, and if so, if it's helped them to take Morgellons any more seriously, or if it's helped to inspire any constructive measures such as antibiotics?
I'd be curious to know if any Morgellon's research may have helped anyone in any other ways, too.
If anyone thinks it would be helpful, I can try to round up some of my materials and post links, although I'm not surprised if anyone here already knows their way around the research materials much better that I do.
Thanks in advance for any replies. Wishing, as always, help and hope for people who put up with this awful business.
Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease.
Middelveen MJ, Stricker RB.
Clin Cosmet Investig Dermatol. 2011;4:167-77. doi: 10.2147/CCID.S26183. Epub 2011 Nov 14.
PMID: 22253541 Free PMC Article
https://www.ncbi.nlm.nih.gov/pubmed/22253541
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3257881
I've gone over quite a few papers on Bovine Digital Dermatitis (BDD) which is often compared to Morgellons because of the similarities, and it looks there may be something missing there that is present in Morgellons to give the two their differences.
Omar Amin identified black specks or black grains from Morgellons cases as the fungus Madurella but Madurella may not be distributed in the United States in a manner that can easily account for the distribution of cases (the last distribution map of Morgellons cases I saw had many cases in New York, which may be far north of where we might normally expect to find Madurella in the US).
Since I don't know the methods Amin used, it's hard to say, but I wonder if he misidentified Aspergillus as Madurella, since Aspergillus terreus is supposed to be capable of causing black specks, and Aspergillus might better fit the profile of Morgellons in a number of ways.
In BDD, there seem to be such frequent reports of spirochetes, mycoplasmas, and anaerobes that it may be that these three team up to produce BDD. I've read that Mycoplasma infections can be insect-borne and are often co-infections with Borrelia, which is very strongly associated with Lyme Disease, and a person or an animal might contract some of these infections any number at a time.
I can't speak for anyone with Morgellons but both Morgellons symptoms and the microbes that have been named by these researchers make it sound to me rather like Lyme Disease with something extra (a fungus?), if that would help anyone's caregivers to be more understanding or more helpful.
Association of spirochetal infection with Morgellons disease.
Middelveen MJ1, Burugu D2, Poruri A2, Burke J3, Mayne PJ1, Sapi E2, Kahn DG4, Stricker RB1.
F1000Res. 2013 Jan 28;2:25. doi: 10.12688/f1000research.2-25.v1. eCollection 2013.
Morgellons disease (MD) is an emerging multisystem illness characterized by skin lesions with unusual filaments embedded in or projecting from epithelial tissue. Filament formation results from abnormal keratin and collagen expression by epithelial-based keratinocytes and fibroblasts. Recent research comparing MD to bovine digital dermatitis, an animal infectious disease with similar skin features, provided clues that spirochetal infection could play an important role in the human disease as it does in the animal illness. Based on histological staining, immunofluorescent staining, electron microscopic imaging and polymerase chain reaction, we report the detection of Borrelia spirochetes in dermatological tissue of four randomly-selected MD patients. The association of MD with spirochetal infection provides evidence that this infection may be a significant factor in the illness and refutes claims that MD lesions are self-inflicted and that people suffering from this disorder are delusional. Molecular characterization of the Borrelia spirochetes found in MD patients is warranted.
https://www.ncbi.nlm.nih.gov/pubmed/24715950
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3954163
One of Omar Amin's papers that is available free on ResearchGate where he reports finding Madurella
https://www.researchgate.net/publication/269394622_The_Case_Against_Delusional_Parasitosis
3.3 Bacterial and Fungal Infections
The author’s bacterial culture swab tests from open sores of NCS cases usually show infections with Staphylococcus aureus (S. coagulase positive), S. epidermidis (S. coagulase negative), or S. haemolyticus, as well as with metabolic waste, mycelia or sporangia of fungi such as Madurella sp., among others. The latter material from Madurella sp. appears to be related to the often reported black specks and fibers [10, 22]. The healing of these lesions was observed to be proportional to the exit of the remaining fibers from lesions [25].
I believe the Staph infections have also been noted by other Morgellons researchers but Staph are often normal residents of the skin and could easily get into lesions once they are open, without having anything to do with causing the characteristic Morgellons symptoms.
I should add that I seriously think that every aspect of Morgellons, no matter how strange it sounds, can be accounted for scientifically, from the unusual color of fibers to the findings of mineral deposits on hairs or in lesions and I invite any doctors or researchers to try to share in seeing things that way.
The strangest finding may be the heat resistance of fibers, which may be because of powerful antioxidants (the unusual pigments may be these) that can resist oxidative combustion. That took some thought, at first I had a hard time believing Randy Wymore about that, but there is hope for us skeptics.
That is really about all I know to do or say to fight the fight right now.
This might also include the fungi being killed off and the DNA of the fungi being damaged in the process, which might give strange or confusing DNA results for fungal testing.like those of Ahmed Kilani, reported in the Washington Post
http://www.washingtonpost.com/wp-dyn/content/article/2008/01/16/AR2008011603134_5.html
"Ahmed Kilani, an infectious disease microbiologist who runs Clongen Laboratories in Germantown, also thought he could figure out the Morgellons mystery fairly quickly. In late 2006, out of the blue, he began getting phone calls and e-mails from Morgellons patients. He took pity on them. "They suffer so much," he says. He contacted Leitao at the MRF and started collecting fiber samples. Under the microscope, they looked just like the fuzz from his office carpet. Still, he dressed in a biohazard suit and tested for leishmaniasis, or "Baghdad boil," a nasty disease of lesions transmitted by sand flies. No match. He spent thousands of dollars building assays to test for protozoal infections and fungal diseases. "It was like chasing ghosts," Kilani says. He began thinking the fibers might be the feeding tubes of fungal spores. He amplified the fungal DNA from the fibers, but it didn't match anything published in medical literature. "Unfortunately, this turned out to be more difficult than I thought. I still do not have an answer," says Kilani,,,"
Another concern that may be scarcely discussed in research literature is the possible effect of biomineralization in Morgellons on antibiotic therapy. Some antibiotics aren't supposed to be taken within hours of mineral suppliments because the minerals are supposed to be able to neutralize them. Can the mineral deposits found in Morgellons studies neutralize antibiotics that come near to try to rid of the microbes that may be making the mineral deposits? Do these deposits have to be worn down with longer courses of antibiotics sometimes to overcome such possible defenses against antibiotics?
Also, when talking about some of the infections that may cooperate in producing the novel symptoms of BDD or Morgellons eventually becoming absent from the site, this might need to be kept in mind when attempting to test for some of the participating organisms which may not longer be present, and it may be that the symptoms are sustained even after the loss of some of the participants, by some of the remaining infections suppressing the immune system so that it isn't able to clean up the symptoms when some of the causes are gone?
This may be one of the contributions of the anaerobic bacteria (Bacteroides or Prevotella?) that may participate in this, to prevent healing. I seem to have skin disease of my own that may be prevented from healing itself because of the chronic presence of anaerobic bacteria, and this includes the failure of my pilonidal cyst surgery to completely heal. It was going well until what seem to be the typical signs of anaerobic infection re-appeared right where the surgery was, and the healing stopped right there.
This might also prevent the damaged remains of fungal (or bacterial) infection from being cleaned up so that it's still there to potentially confuse a DNA test? BTW, it's my understanding that DNA testing may not be able to distinguish between live or dead microbes.
Another thing, since I'm tentatively suggesting Aspergillus terreus (or possibly other Aspergillus species?) may be the typical fungal infection that may be present - I've seen numerous references to gardening and possible puncture wounds - thorns or cactus spines - mentioned in discussions such as those about what different cases of Morgellons may have in common.
Aspergillus terreus seems to be a common organism in soil (and might also be common in the soil of potted plants), or compost, or decaying vegetation,
https://en.wikipedia.org/wiki/Aspergillus_terreus
"Aside from being located in soil, A. terreus has also been found in habitats such as decomposing vegetation and dust.[4]... The soil of potted plants is one common habitat supporting the growth of A. terreus, and colonized soils may be important reservoirs of nosocomial infection.[18] Other habitats include cotton, grains, and decomposing vegetation.[4]"
(Nosocomial means hospital-acquired, in reference no doubt to potted plants which are being banned from hospitals for potentially carrying bacteria or fungus).
Someone mentioned having yellowish granules rather than black ones, and there is a yellow pigmented species of Aspergillus that might be able to participate in Morgellons symptoms in place of black pigmented Aspergillus species?
Note that some of species of anerobes maybe be black-pigmented, such as some Bacteroides or Prevotella, but even though they've been reported in BDD, I do not know of any reports that suggest they are contributing pigmentation to the BDD fibers, which seems to encourage my suspicions of a fungal source rather than a bacterial source for the unusual pigmentation of Morgellons fibers or granules.
The unusual strength of the fibers might owe to cross-linkage of hair proteins, possibly with the cross-linking provided by the usual pigments, which might also contribute to the "curliness" that's often reported or seen in images - sort of like how a hair perm works, only with different materials and different properties as a result?