What the Morgs?
At What the Morgs, our mission is to support those affected by Morgellons and Lyme Disease. By having meaningful conversations, telling real stories and raising awareness for the community.
What the Morgs is a dedicated resource for support, education, and community for those impacted by Morgellons and Lyme disease. Whether you're seeking information, connection, or guidance, we're here to help.
Hosted by Britt Girvan!
What the Morgs?
Inside Morgellons Care with Dr. Jesse Keller, M.D., M.C.R.
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In this episode of What The Morgs Podcast, Host and Lyme & Morgellons Awareness Advocate Britt Girvan sits down with Jesse Keller, M.D., M.C.R. – Associate Professor of Dermatology at OHSU, for an honest and compassionate conversation about treating Morgellons and supporting patients who often feel unseen. Dr. Keller shares his journey into medicine, why he chooses to work with Morgellons patients, and how listening has become one of the most powerful tools in his practice. Together, they explore the complexity of Morgellons, the emotional toll it takes, and emerging research—including a notable connection between iron deficiency and symptoms.
Topics Discussed
-Why compassionate, patient-centered care is critical for Morgellons patients
-New research insights, including links between iron deficiency and Morgellons
-The emotional journey of patients navigating diagnosis, treatment, and validation
What The Morgs Podcast is dedicated to raising awareness about Morgellons and Lyme disease through authentic conversations, lived experiences, and expert interviews within the medical community. If you are suffering and don’t feel seen, heard, or supported—this podcast is for you. Keep fighting. You are not alone. We believe you. For medical providers seeking to learn more, thank you for your willingness to listen and grow alongside this community.
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What The Morgs? Website: https://whatthemorgs.com/
About Jesse Keller: https://www.ohsu.edu/providers/jesse-keller-md-mcr
Hi, I'm Britt Gervin, host of What the Morgs podcast, and I am so happy that you're here. This podcast is dedicated to raising awareness for both Lyme and Morgelin's disease. I promise to give you authentic conversation, lived experiences, and expert interviews with people in the medical community. I'm so grateful that you're here. Thank you so much for tuning in. Today we have Dr. Jesse Keller. Dr. Jesse Keller is a board-certified dermatologist at Oregon Health Sciences University in Portland, Oregon.
SPEAKER_00We found that 56% of patients with morgellins are either iron deficient or iron insufficient.
SPEAKER_01Knowing that my Morgelans is leaving my body at a rapid clip is a gift. And to know that other people aren't having that same experience and continue to suffer is excruciating for me.
SPEAKER_00People are happy to see me before I walk into the room. They almost feel this like sense of comfort or sense of I feel like I'm in the right place.
SPEAKER_01Hello and welcome to the What the Morks pop podcast. Um today we have Dr. Jesse Keller out of uh Portland, Oregon. Dr. Jesse Keller is a board-certified dermatologist at Oregon Health Sciences University in Portland, Oregon. He is also my dermatologist. Dr. Keller consults patients with a broad range of conditions, including dermatitis, cellulitis, shingles, and then moves into more serious conditions, autoimmune, and also includes treating Lyme and Morgellins patients. Dr. Keller is the Associate Director of Dermatology residency training program at OHSU Department of Dermatology as well. Hello, Dr. Keller. Thank you so much for joining us today. Super excited to have you here today. If you could tell our listeners a little bit about yourself, what drew you to medicine, and then specifically dermatology.
SPEAKER_00Yeah, so um I grew up here in the Pacific Northwest. Uh kind of born and raised, did most of my training here, um, went out to the Midwest for three years for residency training in dermatology, but uh that was really the only time I left the area. Um I think I had an interest in medicine from a pretty early age. For me, I was the kid that was always missing school, sick with ear infections, those kinds of things, and then um needed a lot of ear surgeries. Um, probably every two years or so they were going and taking, removing bones, putting prosthesis in. Um, so that kind of sparked my interest. Um, just how there was a problem I was having that was very painful, very distracting, and I was able to some someone with expertise was able to help me with that. And so I thought, well, I'm gonna do the same thing. I'm gonna meet an air surgeon. I realized that I didn't really have the personality of a surgeon, uh, but other than that, I love medical school. I I loved every bit of it. And um dermatology was something that I didn't learn about until later in medical school. Um, but it's something where there's really a lot of variety. We deal with infections, we deal with allergies, we deal with uh cancer, um, we deal with autoimmune conditions, and they they can all kind of overlap or look the same. So there's a lot of investigation, a lot of uh biopsy, microscope work, a little bit of procedures. So um no matter, I feel like anybody in dermatology can find a niche or something that they're good at or that they prefer to do. There's there's so much breadth and so much depth in dermatology.
SPEAKER_01That makes sense. I can see that. Especially after, especially after my own per personal Morgellens um journey. Um, yeah, I can only imagine. It's interesting. I remember when I first met you and couldn't believe that there was a dermatologist that actually saw Morgellen's patients, like that you see us. And I remember just breaking down crying, asking you, you know, why is it that you choose to see us, Morgellen's patients? You know, um the same information is out there to other clinicians, right? Why why is it that you chose to see us and how can we get that to translate, you know, to other clinicians um as well?
SPEAKER_00Yeah, I think um one of the things that's always stuck with me from my residency is I had one professor in particular, and he said something about when he was a resident, he was very careful about making sure that, you know, so let's step back a minute. He he's in clinic with other residents, so they're all sharing patients, and he was very careful to not look at the charts beforehand and say, I'm gonna choose to see this person, or I'm gonna choose to not see this person, or I'm gonna let somebody else see this person. He wanted to kind of blindly know that no matter how difficult he might be, that he could try and he could see and try to help anybody who walks through the door. And so I always kind of took that with me. Um, and I don't I probably it probably meant more to me than it did to him, but um, just the simple idea of as a physician, as a healer, we're gonna at least try for our patients to try to show up and be there. And as far as, you know, I don't want to be the person who says, not my problem, not my territory, go see someone else. I can't help you. Um, so I'll admit I had no formal training in Worgellons or anything like this when I was a medical student or resident. Um, but when people kept showing up to my office at OHSU, I felt like I had to do the best that I could for them. And early on, it was not much. It was just being a nice person and listening and um telling them what I could tell them, which was more just a skin directed therapy. But um with Morgelins, it feels like a lot of a lot of the symptoms come from within. They're not they're not just on the surface, so to speak. This isn't a rash that you can visually see. Um, you know, psoriasis, eczema, people come in, they're flaking from head to toe. You can see the rash from head to toe. You go, oh my gosh, this person's really suffering. But Morgellins is more of a you're suffering from the inside, and there's there's things going on in the skin that you can't always appreciate. But um if you spend enough time listening to what the patient will tell you, you can you can learn a whole lot.
SPEAKER_01Yeah, I'm wondering, um, you know, I know that um we all present differently, and also, you know, different treatment protocols certainly um are variable as well. So not only, you know, what the patient can actually tolerate, right? Um, because some of the mess medicines um can create other unsightly or unwelcome um symptoms. But um yeah, I'm wondering um, you know, is there in in in your patients that do have more gelins, is is there um significant similarities? And also as far as treatment protocols, have you seen generally anything that kind of tends to work for say, you know, most folks? I know it's kind of a loaded question because it really is very variable.
SPEAKER_00Yeah, I think it I think it really is variable. Um I mean, I I kind of try to let the patients guide me as far as what they're experiencing, what their goals are. And I feel like that's one of the most variable things to navigate. And so I think um I heard some study in medical school that on average a doctor will interrupt a patient after 14 seconds and kind of steer them towards the questions that they want to ask that we're trained to ask towards the problems that we can kind of address and handle in almost kind of an algorithmic way, um, to where there's not as much creativity or thinking about it. Um my patients will come in and and true, a lot of the symptoms will overlap, so there are some similarities. Um, I mean, sometimes the similarities could be so striking that you go, oh my gosh, like this is an epidemic. This is a we need to figure out exactly what's causing this because so many people have the same thing. Um, but at the same time, there are people who are think, you know, my patients will say things like, I really want some testing. I want to get to the bottom of this, and I want to figure out what's going on. I want to find the root of the problem before we do any kind of treatment. And that's that's one approach. Um, another approach is patients will say, Just get me better, I'll try anything, whatever you say, you're the doctor. And then we have everything in between that. Some people will say, you know, I don't like taking creams, or I don't like taking pills, or I'm just really worried about side effects. What can I do that's a little more natural leaning? What can I do to help me sleep better at night? Um, so I kind of work within the realms of what they're giving me as far as what their goals are, what their most pressing symptoms are, and what they're what they're um willing and not willing to do.
SPEAKER_01Do you find that your Morgellan's patients, do the majority of them have Lyme?
SPEAKER_00Um I haven't seen a lot of Lyme here. I know that that's different in in Europe, and I know it's probably different on the East Coast. Um, and I think Lyme is kind of a tricky one, right? Because it has to do with the testing uh algorithms. And if you get a St. Eliza or a Western blot here at OHSU or Quest or somewhere in town, um, there's a very specific if you have three or three or four of these bands are positive, we'll count that as a true positive. And if you have less than that, we'll count it as a false positive or a negative, they'll say. Um, but I know that a lot of people are being drawn to kind of the Igen X, which is this outside lab where they have a lower threshold for calling it positive. So then the question is do are we missing all these patients who actually have Lyme disease? Is who's right? Is IGen X right or is everybody else right? And so there's kind of this little bit of a struggle, if you will, in the community of people with Morgellons and Lyme disease.
SPEAKER_01Yeah, I um yeah, I mean it's my understanding that the Western blot, you know, is 45% accurate. So um it leaves out some of the, you know, those bans. Right. Right. Yeah. And so um, yeah, I've paid for a couple of hygienics, a vibrant, um, and those are quite detailed um and informative. So that include obviously the co-infections and other um diseases or disorders that you know might also populate. Um so that's interesting. Um, so obviously, so am I one of your only patients that has I wouldn't say only, I'd say, you know, probably 10 to 20 percent, 10 to 15 percent. Okay. And then I know that, you know, when I share with you just that, you know, for me and my experience, as my Lyme is dying, my Morgellins is leaving my body at a rapid clip. And I know your comment is, you know, but you're like the only you're my only patient that is having that experience. So is that I mean, that's heartbreaking to me because um this experience is um is brutal. And um in all the work that I know that all of us patients put in to um caring um for our own health and wellness, um, it's a lot of work. It is 24-7 that we work at getting well. And knowing that my Morjellens is leaving my body at a rapid clip is a gift. And to know that other people aren't having that same experience and continue to suffer is excruciating for me to know because really, for the most part, we're all hanging by a thread. You know, a lot of people have lost their families, their jobs, their roof over their head, their families have ostracized them because they don't believe in more gelins. So, um, so that makes me honestly incredibly sad. Incredibly sad that other people aren't having um a similar experience, you know, and why, you know, I'm grateful that I am, but like, you know, and again, we don't have enough research, so we don't know, you know, but it's just I have like why, you know, why?
SPEAKER_00Yeah, I've met a lot of patients who describe kind of this die-off that you also describe. Like they feel like things are leaving, but um a lot of patients are kind of alarmed, they don't know it. Does this mean I'm getting better? Is this mean it's does this mean I'm getting worse? Is it all gonna come back when I stop the antibiotic? And so I'll see people just for years and years and years just stay on the antibiotic because it's just I don't want to take the risk of of not being out of the antibiotic.
SPEAKER_01Yeah, I have um a few Lyme friends in my world that, you know, they can't go off doxy. It just doesn't work for them. And for them, what it relieves is their cognitive fog. That doesn't work for me, you know. The way that, you know, mainly that I've been hit is, you know, my cognition. Um, but I don't get relief from doxy, you know, like other folks. Um so um, yeah, and then I know that there's a whole dialogue with long-term use of antibiotics, but you know, a lot of these folks also too, they have no idea what it feels like to be in our shoes, you know. So if that's the least that, you know, you know, is is to take oral antibiotics in order to, you know, get to the end of the tunnel. I mean, I I do it as well.
SPEAKER_00Yeah. I mean, of all antibiotics, I feel like tetracyclines are among the safest. We have people not with morgellums, but with acne who are on doxycycline for months and months and months, or years and years and years sometimes. So I think um it's certainly reasonable if it helps you get your life and your function back.
SPEAKER_01I agree. Do we have any update on the research study? So I'm currently enrolled in your research study, and I, if I recall, you are taking a look at, say, more gelins and iron deficiency.
SPEAKER_00Yes.
SPEAKER_01Okay. Can you talk a little bit about that and maybe some of the findings that you're uh finding?
SPEAKER_00Yeah, we just that's really interesting. I'm glad you asked. We just published on this last year, and what we did is we did a chart review study, a retrospective. So looking backwards at people that were seen in the clinic for morgelins. And where you draw the line, it's like just with any test, not just line, but iron levels, where you draw the line between normal and not normal is a little bit of a blur. But um what's defined by our lab is iron deficiency if your ferritin level is less than 20, and iron insufficiency if it's less than 50. So either way, though those are not good things. Um, we found that 56% of patients with morgellins are either iron deficient or iron insufficient. And what's really interesting to me is a lot of patients with morgellins will also have this other condition called restless leg syndrome. I don't know if you've heard of that association or comorbidity, um, but that's a condition where people are also notorious for having iron deficiency. So, you know, I know that people for there was a recent restless leg syndrome review where people say if the ferritin's less than 100, you should be increasing it. So now I'm I'm thinking I might even want to be a little more aggressive with having my patients take iron supplementation. I'm usually referring them for iron infusions if it's very low. Um, but even for, you know, just a little low, I'm having them take supplementation to replace that iron.
SPEAKER_01Oh, interesting. Um, is there um is their body recovering from the chronic anemia then? If after I mean, are you finding that their body is able maybe to kick back in at some point?
SPEAKER_00Um as far as re recovering with a little bit of supplementation or infusion, people feel better usually right away after the infusion. And it's hard to know, it's like, oh, I got something done, I filled up the tank, I I feel good about that. But um as time goes on, that iron level usually kind of drifts down. And so we don't know, like, I don't think that all these people are bleeding excessively. Um, it makes me wonder if there's something different about the diet or something something different about the way people with morgelons are absorbing their and their nutrients. It's it remains to be seen. But um, yeah, it seems to be more of a chronic issue with how the body handles iron in general. And so that's part of another study we're doing. Um if I could just talk about that for just a second. Um there's a study where we're looking at we're trying to get 10 patients with morgelons, and soap, not a hard thing to do, right? Uh, but we're looking at uh MRI scans of the brain and we're looking at where iron deposits. Is there too much iron in the brain? Is there not enough iron in the brain? And then we're also looking at systemic. So throughout the body, throughout the bloodstream, are there markers that we're looking at different markers of things that handle iron? And if we want to see if these other parameters are affected too.
SPEAKER_01Okay. And then do you currently have your 10 more gelins patients, or are you got seven we've got have gone through the complete study.
SPEAKER_00We have two more we're trying to schedule. So we're looking for one more to qualify for that. There are some qualifying uh parameters, but yeah.
SPEAKER_01Okay. Um, and so and then the the research study that I was a part of, though, you have published. So that is out in the world.
SPEAKER_00Um I want to be sure we're talking about the same study. So the iron study is published. Um, I think what you might have been involved with with was a survey. Oh, okay. With um exposures earlier in life. Is that correct?
SPEAKER_01That that sounds right, yes.
SPEAKER_00Okay, yeah. That one we are not quite finished with it yet. We're still collecting surveys. And part of that is we have to match with pe healthy controls who do not have mergellons. And so we're trying to find everyone who's the same in every way, same gender, same age, same way, same walk of life, same everything, except they don't have the mergellons.
SPEAKER_01Got it. Got it. I would imagine that, you know, I mean, I know when I met you and I came to you, you know, um, most of us have gone through multiple clinicians um to find someone that sees us, that values us, that believes us. And I can only imagine what that's been like for you, right? Us coming to you and how we all present. I I can't even imagine how emotional that must be for most of us patients um coming um to see you. Um and along with that, too, you know, I'm also curious about some of your colleagues, like say in your own department, you know, do you have support from them? I I just know it's it's very limited. So I'm just I'm I'm curious.
SPEAKER_00Yeah, so um two questions to kind of unpack there. I think when patients first see me for their Morgellans and they've kind of been around the block, they've seen eight to ten other doctors. Um, when I first started out my practice, it was these were always very emotionally charged visits. People were crying, people were weeping, people are saying, You better figure this out today. You're my only hope. And um, you know, that's that's intimidating for a young and new doctor.
SPEAKER_01Um I would imagine.
SPEAKER_00And uh, you know, I'd say, I'll do my best, but I can't promise any miracles. And so, like you said, a big part of it is is just acknowledging and meet meeting that meeting that person, person to person, as opposed to doctor to patient. So I think makes a big deal, makes a big difference. Um, but I think now that I've gotten a little bit of a reputation, um, people are happy to see me before I walk into the room. They they are they almost feel this like sense of comfort or sense of I feel like I'm in the right place. And so um, you know, it's it's it's it's hard to help everyone when you're one of the only the few people who sees Morgelans. Um, but I feel like that reputation kind of helps me out a little bit. Um, your question was about support for my department. Yeah, they they're all for it. They love it, and they love that I'm able to teach on the topic. I'm able to teach the residents. So, you know, I've I've had situations where there was a fam family friend of a friend who had more gelones up up in Washington State, and I wasn't able to see them, but they found someone who I had trained a few years earlier, and they were helped out. So it's really nice to be. Yeah, I'm getting to influence the X generation of doctors. And so um, you know, we're we're continuing to try and recruit new residents and good people and people that we we know are eager to learn and have an open mind.
SPEAKER_01Yeah, I remember when I when I first met you, and that that was another question of mine was, you know, you know, what are you what are you running into with your colleagues? Um, you know, we know that as as clinicians um become more seasoned. And um not not everybody is open to new ideas, you know, um new illnesses, maybe new ways of learning too. But um I remember that, you know, uh you had mentioned that a lot um had fallen on deaf ears, but that you having the position of running that residency training program, you're like, this is my captive audience, these are my residents, and and I loved it because you just shared an example of you had trained someone, they're now in Washington State, and they were able to go see them. And that is like such a gift. That is it's an incredible gift. Um, I just we are just um treated so poorly. Um it's it's excruciating. It really is excruciating. Um yeah, I mean, I just hope that the future, you know, and it's certainly why I'm choosing to do the podcast is, you know, I I would like some chatter. I would like we need to be talked about, we need to be seen, uh, we need research uh funding dollars coming in our direction um to get more people on board, you know, and and even, you know, so many, um, so for example, with with me having Lyme and Morgelins, you know, um my treatments aren't covered, you know, my visit with you is covered, but you know, we all have to pay out of pocket and it's just it's not right. Yeah, it's just it's it's it's just not um it's just not right. Um yeah, I I just I can't I can't thank you enough, um, honestly, for um for seeing us. I mean it's a big deal. You could choose to be anybody else and choose not um to see us, but um, but I know it's important to you. And um, you know, um as a as a as a soon-to-be survivor, I I would like to to say that I feel like in the next few months I'm might be in remission.
SPEAKER_00Wonderful.
SPEAKER_01Yeah, and um, you know, I I know I'm I know I'm at the end. I know I'm making little baby improvements, but you know, it certainly took a team to get here. Um, it took a giant team. Um, I know we have to go because I know you have to go see some patients, but I am curious um for those people um that might find this um podcast and find you. Uh, do you currently have openings for new patients? And I know it's difficult to see you and all the things, but you know, if we could just, you know, um I don't know, um, is there an opportunity? You know, could people see you?
SPEAKER_00I never say no. Um the the the hard part about that is we're booked out many months, or at least I am. Um I am kind of here, there, and everywhere. I have some clinic here at OHSU, I have some over at the VA, and then I'm in the hospital in the emergency room as well. Um, and then I train residents in their clinics too. So um that being said, my wait time at OHSU can range from five to nine months, uh, usually more towards nine months for new patients. Um if you're if you're a veteran and you can see me at the VA, you'd probably get in a little bit sooner. Okay. So that's that's helpful. That's good to know.
SPEAKER_01Yeah.
SPEAKER_00Um, but yeah, I'm I'm I'd be happy to see you and and and love to help. I wish there were more of me. And like I said, we're trying to recruit people who want to specialize in more gelans too. So um hopefully we can it's it's the next best thing I can do after cloning myself.
SPEAKER_01Uh that would be that would be that would be lovely. But like you said, I mean, you are training residents. So um that's a gift. That's a huge gift, and it's a step in the right direction.
SPEAKER_00Yeah.
SPEAKER_01Um, so you know, they could just as easily have landed in a completely different clinic and that particular physician is, you know, not open at all.
SPEAKER_00So just the fact it's that practice of, oh, not my problem, too, too, too time consuming, too difficult, go go away.
SPEAKER_01Yeah. Yeah, exactly. Um, well, I want to just say thank you so much for your time. Thank you for championing Morgelins. I just um I appreciate you. Um, I know that those listeners that are also, you know, suffering with Morgelens, just being validated by a clinician is is a gift. So I just want to say thank you so much for all you do for all the patience. And thank you so much for being a part of um of the podcast.
SPEAKER_00You're very welcome, Britt. And thank you for putting this all together. And I wish it and wish you the best success. Okay.
SPEAKER_01Thank you. Thank you so much. Okay, take care. Okay, take care. Bye-bye. Thank you so much for tuning in to What the Morgugs podcast. I'm beyond grateful that you're here, and thank you so much for being a part of the special community. To learn more, you can visit us at whatthemorgues.com and you can follow us on Facebook and Instagram at WhatThemorguz podcast. Thank you so much for tuning in.