Morgellons disease is a rare skin condition described by an intense itching, burning and crawling sensation underneath the skin. Many living with the condition also experience painful sores and, as a 2024 study found, have a lower quality of life. Oregon Health and Science University Dermatologist Jesse Keller is one of the authors of that study. He was also recently featured in an article about the condition in Undark. Keller joins us to share more on what Morgellons disease is and what he hears from the patients he treats.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. People who suffer from a rare skin condition called Morgellons disease describe symptoms like intense itching, burning and a crawling sensation underneath their skin. But most clinicians consider Morgellons to be a psychiatric condition, a subset of what they refer to as delusional infestation.
Jesse Keller tries to avoid that phrase. He’s a dermatologist at OHSU who has seen hundreds of Morgellons patients. He was recently featured in an article about the condition in Undark – that’s a digital magazine that explores the intersection of science and society. It shows that Morgellons offers a kind of case study for how doctors can best ease real suffering among their patients when there is real disagreement about the reasons for that suffering.
Jesse Keller joins us now. It’s great to have you on Think Out Loud.
Jesse Keller: Yes, thanks for having me.
Miller: What do patients experience? I mean, what do they come to you and describe as their symptoms?
Keller: As you said, crawling is one of the major things. People will feel sometimes a sense of tension, twisting or torsion within their skin. And then one of the descriptors I hear quite a lot is “it feels like there are ingrown hairs under my skin and they’re all connected to one another in a network, and it’s very uncomfortable.”
Miller: How disruptive can this be for people’s lives?
Keller: It can be incredibly disruptive. From an anecdotal standpoint, I see patients all the time lose their job, lose their relationships with their family. They’re afraid to leave the house or visit their grandkids, one because it can be a little bit disfiguring. The other is they’re afraid. They wonder if they have something contagious that they don’t want to pass on. We have data also to show that the quality of life in this condition is worse than other skin diseases like psoriasis and eczema.
Miller: When you say people might lose their jobs or social connections, what are the reasons for that?
Keller: It could be for a variety of reasons. I think jobwise, it can be a matter of, “I stayed up too late cleaning or I couldn’t sleep because of the itching, and I slept through my alarm,” those kinds of things. Just kind of a general spiral and disorganization due to lack of sleep. As far as socially, it can be, “I don’t want people to see me the way I look;” “I don’t like the fact that people disagree with me,” or “they question me;” “They think I’m crazy when I describe what’s going on with my skin because they’ll still tell me it sounds crazy. How could they not think that?”
Miller: When you say some people might be self-conscious about how they look, what does it look like? How can it present visually?
Keller: Visually, it can be very mild. There are a lot of people walking around who have Morgellons and you wouldn’t know it from looking at them. A lot of the time people will feel that itching or crawling, and they will want to investigate. So they will either take their fingernails or certain tweezers or tools to try to extract whatever it is they feel moving in their skin. And that does provide some sense of temporary relief, but it can lead, obviously, to some wounds and some scarring, some in accessible places like the face, some in not so visual places. And so they’re self-conscious about that.
Miller: When did you first encounter this as a doctor?
Keller: I saw one case of it during medical school. I saw one or two during residency, but it wasn’t until I moved to Portland, Oregon and started practicing in 2015. I would say within six to 12 months I was seeing lots of cases like this and it was a little uncomfortable because I didn’t really have a lot of exposure or training to it.
Miller: I guess if you only see it once in med school and residency, maybe it’s not surprising that there wouldn’t be much training for it. So how did you deal with those patients at the beginning?
Keller: Even though I didn’t feel like I had the medical tools to help them, I think I just tried to help them by being a good human being, just listening to them, hearing them out. And that’s part of just the art of being a physician, a doctor, being there with the patient and listening to what’s happening and their suffering. I think as time went on, I was able to attend some conferences and pick up tips along the way, and find that there are some medications that can actually help people.
Miller: I want to hear about that in a few minutes. But at this point, how many Morgellons patients would you estimate you’ve seen?
Keller: I think we’re probably somewhere in the 600, 800 range.
Miller: Wow, do they make up a significant percentage of your practice?
Keller: They probably make up about 25% to 50% of my practice. And that’s only because at this point I’ve now evolved into the specialist, so people are referring their cases to me.
Miller: From how far away?
Keller: Most of them are locally, but I’ve had patients self-refer from places like Chicago, Mississippi or Massachusetts. People come far and wide.
Miller: If they’re coming from the East Coast or Mississippi, is it fair to say that, in general, they’re coming to you after they’ve been able to get the care that they are seeking where they live?
Keller: I think there have likely been attempts to get that care, but I think usually people are unsatisfied with their care in general. And that’s a theme both here locally as well as far away.
Miller: What have you heard, even just from your own patients, about what they’ve experienced from other doctors before they seek you out?
Keller: That’s an excellent question. I hear all the time [from] patients, there’s a theme of dissatisfaction with their care. I hear things like, “They didn’t even look at my skin. They spent less than a minute in the room with me. They gave me a prescription for an antipsychotic, didn’t explain why and left the room.” I’ve heard patients say things like, “I go to the emergency room and they tell me there’s nothing wrong with you, and they tell me to get out.”
Miller: I wonder, if that’s been their experience in the past, how does that affect your immediate relationship with them? I guess I’m wondering how much mistrust they walk into the room with, that you’re gonna be just like the other medical professionals they’ve seen?
Keller: That’s, again, a really good question. It impacts it a lot. I think patients, inevitably with this condition, after running into dead ends and getting answers that they’re not satisfied with, develop a bit of an adversarial or confrontational relationship with the doctor. So people will come into medical appointments almost as if they’re preparing for a legal case. They bring evidence, they bring documents, they want to tell their whole story, to try to kind of win you over and prove to you what’s going on.
So it can be a little bit like walking on eggshells, as a provider, because you don’t want to say the wrong thing to offend that person and have them storm out of the room on you. But I do think, lately, the reputation I’ve developed has been helpful because people are now happy to see me. They’re choosing to see me and they’ve heard about me ahead of time.
Miller: How would you describe the current standard of medical care for this disease?
Keller: The current standard of care is a little bit problematic because it doesn’t always line up with real life experiences. So, to give you an example, the textbooks will tell you this is a psychiatric condition. You prescribe the patient an antipsychotic and that’s kind of the end of the story. And then if you flip that to when you’re actually in the real world and you’re with a patient, they are often very, very convinced this has nothing to do with a psychiatric condition and that, “You must be missing something, because I am very sick. I can’t think straight, I can’t sleep, and I definitely feel crawling and movement in my skin.” So the last thing patients are willing to do is to accept a prescription for an antipsychotic.
Miller: So then where do you start? As you said earlier, sometimes you feel like you’re walking on eggshells. So it seems like you have to tread carefully. What’s your starting point?
Keller: My starting point, first of all, is just a lot of listening. I want to really understand where somebody’s coming from, where they’ve been, what their belief systems are. Because you might find that somebody is not willing to take any oral medication. Or you might find that they’re not willing to take any medication without some testing first. And a lot of times patients will come with something that they’re not going to be happy with unless they walk out of the door with that one thing, whether it be testing of some kind of specific treatment. So I try to figure out, what are their goals are for today?
Miller: When you say that they’re coming in with some specific treatment, what is the most common thing that they would want in terms of treatment?
Keller: Yeah, a lot of times I think well-intentioned patients will ask for things like antibiotics, antifungals or anti-parasitic medication because to them it has to be an infection and it’s going to take a lot to convince them otherwise.
Miller: But in your mind, this is not an infection?
Keller: Well, I wouldn’t say that 100%. I mean, we want to do our due diligence and test people appropriately. Morgellons has been linked occasionally to conditions like Lyme Disease, so there is some of that in the literature. So that is one thing I will often test my patients for. But I often will caution my patients. There are things like antibiotics, anti-fungals, and antiparasitics, even, that have anti-inflammatory effects. So even if these do work for you, it’s not something that we’re going to have you take forever.
Miller: I mentioned that recent article in Undark that you were featured prominently in. That article says at the beginning that you have a whole shopping bag packed with bottles full of fibers taken from the skin of your patients. What do those samples look like?
Keller: Patients will come in with all kinds of things like Tupperware containers, duffel bags, Ziploc bags. But at its essence, these tend to be things like hairs, scabs, specks of dirt, lint or dust that people have found when they’re cleaning around their house, cleaning the kitchen counter. As I said before, people will try to get any evidence they can to prove to you that “these are things coming out of my skin and they really shouldn’t be there.”
Miller: Right, I’ve seen a pretty serious dividing line here being whether these were formed by the human body. I’ve seen reports of people saying that they were made of keratin or collagen, things that a human body would make. Or are they lint, pet hair, carpet fibers or other, say, synthetic fibers? What have you found when you’ve actually looked at what patients have given you?
Keller: Well, I’ll start by saying that I haven’t seen anything that definitively looks like an insect. We also will send some of these specimens out to a send-out lab for insect identification. And we haven’t found anything that was actually an insect of some kind that was pathogenic. To me, they look like typical clothing fibers, lint, dust, things that are kind of tangled up. Sometimes they can be human hairs that are very tangled.
I will say that there is a very passionate community out there, the Morgellon’s Foundation, where there is a researcher at Oklahoma State who is studying these fibers. There are actually a couple of them. And one of those researchers has made the claim that these are definitely not manmade or textile fibers and that they are definitely keratin. So that literature is out there.
Miller: But has that been peer reviewed or replicated by other researchers?
Keller: Not to my knowledge.
Miller: The road we’re going down here just shows how complicated this is. I’m wondering what would happen if you described what we’ve just been describing to some of your patients?
Keller: I think it would go well for some patients. Other patients who’ve had this disease more chronically and are very much invested in this being a chronic infection of some kind would not be happy with this conversation. I’ve even had a little bit of backlash from the Undark article people saying, “how dare they publish articles saying that Morgellons isn’t an infection.”
But I think this can be such a contentious issue and these are interesting questions. We as humans, it’s human nature to want an explanation for the unexplained. But in this larger discussion space and also with my patients, I try to kind of sidestep this contentious discussion and try to focus on how we can address your suffering today. We know that this has really taken a toll on you and the good research will take decades to find answers. But we don’t have decades when you’re suffering today.
Miller: So have you been able to find, in the interim time before, as you’re saying, that decades in the future potentially research bears fruit … Have you found treatments that can help at least in some way?
Keller: Absolutely, yeah. I found a combination of medications and also just understanding risk factors for this condition, and putting it together into a mental framework to help understand it, has been helpful for me.
Miller: What are some of those treatments and the mental framework?
Keller: I would say anecdotally, and all the literature that’s been peer reviewed and published, seems to point to this being a problem with dopamine being elevated in both the skin, the central nervous system and the brain. And all of the risk factors that I’ve observed countless times in my hundreds of patients tend to tie into elevated dopamine.
So if I could just spell out four of those risk factors. I think one of them that’s really interesting is iron deficiency. So iron deficiency is one of the most common nutritional deficiencies in the United States and iron is really important in dopamine regulation. And we published a study last year that over half of Morgellons patients have iron deficiency. So that’s number one.
Number two would be medications that people take for boosting their dopamine. One of those is for treating a common condition called restless leg syndrome. The other is amphetamines like Adderall, that are commonly used to treat ADHD. And then of course methamphetamines do the same thing. They raise your dopamine.
Number three of those four changes would be spinal cord injuries or chronic pain. Those things are known to elevate dopamine. And then number four would be hormone changes. I would say prior to amphetamines being widely used, this is a condition we primarily saw only in post-menopausal women.
Miller: So, if putting these together, is your working theory that there are various changes to dopamine in people’s systems that makes it more likely that some kind of skin sensation will be read in our brains as what ends up turning into Morgellons? That, a hair touches your skin or something, and then that’s read as something crawling under your skin or poking through it?
Keller: That’s exactly right, yes.
Miller: How much research has actually been done? It seems like a working theory based on some blood tests and then hundreds of patients. And you’re trying to connect the dots a little bit. But how much actual research has been done?
Keller: There is the Morgellons Foundation I mentioned earlier. They’re focused on the association with Lyme Disease and other bacterial infections like Bartonella. My research … I’m primarily a clinician, not really much of a researcher, as far as having my own funding to do things. But one of the studies I’m looking at now, there are two main aims. One of those is looking at inflammation in the blood, both traditional inflammatory markers and also inflammation that comes from the brain and spinal cord.
The other part of that is looking at markers of iron metabolism and what is happening with iron in these patients. We don’t have all of our analysis done yet, but within the last week, I did get a preliminary analysis. We’re finding that these patients do have an overdeposition of iron in a part of their brain called the basal ganglia, which is important in movement disorders like Parkinson’s, restless leg syndrome and Morgellons.
Miller: Jesse Keller, thanks very much.
Keller: You’re welcome.
Miller: Jesse Keller is a dermatologist at OHSU.
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