WEBVTT
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Hi, I'm Britt German, host of What the Morgs podcast, and I am so happy that you're here.
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This podcast is dedicated to raising awareness for both Lyme and Morgellan's disease.
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I promise to give you authentic conversation, lived experiences, and expert interviews with people in the medical community.
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I'm so grateful that you're here.
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Thank you so much for tuning in.
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In an overview, it's really my opinion that lack of research, lack of education, lack of standardized protocols for diagnosis and treatment are contributing towards this misunderstanding.
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That's around 30,000 new cases of Morgelin's disease every year, which is twice as common as pediatric cancer and six times more common than ALS or amylotrophic lateral sclerosis.
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I mean, we can definitely say morgellins is a neglected disease.
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What gives you hope as you continue this work?
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My patients are my greatest motivators.
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I feel like I'm failing them if I'm not pushing forward with researching.
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Hello and welcome to another episode of What the Morgs podcast.
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Today I am joined by Melissa Fessler.
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She's a board-certified family nurse practitioner, doctor of nursing practice, and Morgelans researcher.
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Her work focuses on improving diagnostic protocols and advancing clinical understanding of Morgelin's disease with the goal of bringing greater clarity, recognition, and consistency to how it is diagnosed and treated.
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While completing her Doctor of Nursing Practice at UCSF, she developed the first evidence-based preliminary diagnostic protocol for Morgellan's disease, a condition that is often misunderstood, misdiagnosed, and frequently dismissed within the medical system.
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Melissa continues to advance research in this space with a focus on shaping future diagnostic guidelines.
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Melissa, thank you so much for joining me today.
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I'm really looking forward to learning from your research, your advocacy, and experience, helping move the needle in improving the diagnosis and understanding of Morgellan's disease.
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Thank you for being here today.
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Oh, thank you, Britt, for having me.
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I'm looking forward to our conversation.
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Me too.
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So my first question is I'd love to start at the beginning.
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Um, can you tell me a little bit about your background and what pulled you into infectious diseases?
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Yeah, good question.
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So my undergraduate degree is actually in medical and public health microbiology and minor in biotechnology.
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So I always wanted to work in infectious disease.
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I did some research in virology while getting my undergraduate degree.
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And then I went to nursing school.
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After nursing school, I worked quickly in dermatology before entering my nurse practitioner master's at Georgetown.
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And when I graduated, there was an opportunity to work in Lyme disease with Dr.
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Raphael Stricker, who I think you spoke with previously.
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And I had seen that he had been past president of ILADS.
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And I thought, oh wow, what a great opportunity to learn about Lyme disease.
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Because I, even coming from a microbiology background, it was just like a quick little paragraph in a textbook.
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You don't really learn much about it.
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You don't learn much about it in school either.
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So I was really curious to see to learn more about the disease, learn how it's treated.
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And so in that opportunity to present it, I started working with Dr.
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Stricker.
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And that's actually when I learned that Morgelins disease is associated with Lyme disease.
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And so that's really what got me into this field.
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Well, I glowed you, I'm glad you found us.
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What made you kind of maybe want to dive deeper into Lyme and Moore gelens?
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Was there any sort of moment that shifted your perspective or were you studying something in particular?
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Yeah.
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So well, so the clinic that I was working at with Dr.
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Stricker, we saw patients with Lyme disease and people who uh or gelins disease would also contact the clinic and be seen.
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And so when we examined patients with more gelin's disease and ran the test, these patients were also testing positive for Lyme disease and other associated tick-borne diseases.
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So it was really just by by chance that we were also seeing patients with more gelins.
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And it actually is the same treatment as your normal Lyme patient.
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So it was just kind of happenstance that I started treating Morgelins patients as well.
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Um, our clinic, we have about 6% patients come in with more gelin's disease.
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So, and that's interesting too, because that's kind of around the national average, too, right?
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They say that of the Lyme patients, about 6% actually have more gelins.
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So that's actually what you're seeing in clinic as well.
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Yes, and we actually published that study looking at kind of our clinical population of patients, and we actually came to the 6% conclusion based off our clinical data.
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And then Peter Main, um, he also published a paper prior to us finding that he also had 6% of his patients.
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So we actually now have two peer-reviewed studies showing that at least 6% of patients with Lyme disease also have Morgellins disease.
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For for maybe some folks that may not be familiar with morgellins, how would you explain morgellens in your own words?
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Yeah, so morgellin's disease, it's a bizarre dermatologic condition characterized by filaments embedded within or protruding from the skin.
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Um the filaments are composed of normal human proteins such as keratin and collagen that are being produced atypically from the skin cells, specifically keratinocytes and fibroblasts.
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Um, this atypical production is what possibly creates the crawling, stinging, or biting sensations that patients might experience.
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These symptoms may also be accompanied by spontaneously appearing or slowly healing lesions that contain these filaments.
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And Morgellan's disease, as kind of mentioned previously, is predominantly associated with spirochetal infections, specifically species of borelia, which is the causative agent of Lyme disease and tick-borne relapsing fever.
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Though there have been other non-tick-borne pathogens contributing towards the disease process that have been identified, such as Helicobacter pylori and trepanema species.
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So, what I usually tell patients when they come to me is that Lyme disease itself causes a constellation of symptoms that present across the spectrum from cardiovascular to musculoskeletal to neurologic, and in this case, dermatologic.
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So, in other words, Morgellan's disease is really the skin manifestation of Lyme disease, and more specifically, chronic Lyme disease, which is infection that has persisted beyond three to six months.
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Interesting.
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I've never quite heard it in those specific terms.
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It's just it's refreshing to hear some clinical uh facts.
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It it really is refreshing.
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Yeah, yeah, yeah.
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So you have to symptoms associated with Lyme, and then we have a the dermatologic symptoms.
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So when the infection affects the skin, your skin has its own immune system.
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And so when your skin is infected with borrelia, we potentially are seeing what we call Morgelins disease.
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So that that's what we believe it is currently, is basically skin manifestation of an underlying infection.
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Well, it's it's fascinating because I know you know just as well as I do that there is a whole host of idea ideas and theories on, you know, Morgelins and its manifestation.
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Yeah, it certainly would would be nice to continue to move the clinical needle forward so that those of us, more Morgelins patients that are just even now coming on board, they might be able to, you know, um get actual real solid information, factual clinical protocol.
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Again, there's so many out there.
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Um, but but it is refreshing.
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It's it's very refreshing to make some focus.
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And the reason we know right now that morgellin's disease is associated with infection with borrelia is that we have evidence in the form of peer-reviewed literature that demonstrates patients with Morgellan's disease suffer from chronic infection with tick-borne disease.
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For example, you can directly detect borelia spirochetes, which again are the that's just the spiral-shaped bacteria that that's Lyme disease.
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And you can detect them in nearly 100% of the lesions of patients with Morgellan's disease.
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And so this has been confirmed by different independent laboratories using different molecular and visualization techniques.
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And so, in addition to that peer-reviewed body of evidence on human studies, we actually have animal models for Morgellan's disease, too.
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And so there was actually a paper that looked at dog Morgellan's disease called canine filamentous dermatitis.
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And the authors found that nine dogs with all sorts of lesions containing embedded or protruding filaments that were brightly colored, and all those dogs tested positive for borrelia with the causative agent of Lyme disease.
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And that was all confirmed by five different laboratories as well.
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So we have human models, we have animal models, all peer-reviewed.
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So right now the evidence is pointing towards Lyme disease.
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And those papers, those peer-reviewed papers are accessible for folks.
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So I'm thinking about people that might be, you know, listening and curious, but uh, you know, they can access those peer-reviewed papers.
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Do you have an idea of why you think maybe it's so misunderstood or why it's been dismissed for so long?
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Yeah, I think that there are multiple reasons for the misunderstanding and dismissal.
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Um, for starters, there are many misconceptions just about Lyme disease in general and chronic Lyme disease due to just lack of education, lack of awareness.
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I mean, chronic Lyme disease has historically been dismissed by the CDC and Infectious Disease Society of America.
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And those are experts, you know, that guide clinical practice.
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And so here you have a dermatologic condition, Morgelan's disease, associated with chronic Lyme disease, which has historically been dismissed and said doesn't exist.
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Um, and then secondly, current medical practice has already classified Morgellan's disease as a psychiatric condition.
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So when medical doctors or practitioners encounter a patient with suspect Morgellan's disease, the patient is just automatically referred to the psychiatrist, oftentimes without a proper physical evaluation.
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And this is really the current standard of care.
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And so changing the current medical guidelines for practice, it really does require enormous funding for research and educational outreach.
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And so, kind of just in an overview, it's really my opinion that lack of research, lack of education, lack of standardized protocols for diagnosis and treatment are contributing towards this misunderstanding.
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Yeah, it's it's pretty frustrating, um, I have to say.
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And, you know, you and I know that, you know, a lot of clinicians, I mean, but but I think it goes for most professional experiences.
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People find their groove, um, they don't want to learn new things.
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The CDC said this, so it must be the gospel.
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I mean, they need to get beyond the the delusional parasitosis or the delusional infestation.
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So I'm wondering if you can talk a little bit about that.
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Obviously, that comes up a lot, you know, for obvious reasons.
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Um so can you kind of talk a little bit about that?
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Um, like the delusional parasitosis diagnosis.
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Definitely.
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So, yeah, currently delusional parasitosis or DP, um, it's classified as a delusional disorder in the diagnostic and statistical manual of mental disorders or the DSM5, which is used currently by psychiatrists to diagnose psychiatric disorders.
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And so over the years, Morgellan's disease has become synonymous with these other diagnostic terms, such as delusional parasitosis, delusional infestation, or even Ekbaum syndrome.
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And so the name Morgellan's disease comes from a letter that was written by Sir Thomas Brown in 1674.
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He was an English physician, and the letter contained a brief description of a skin disease in French children, where he described these harsh hairs on their backs and disease he calls the morgelens.
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And so there's also similar historical accounts that refer to the morgelons.
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And Dr.
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Ekbaum, who was a Swedish physician, he published also a series of these case studies in the 1930s describing patients who had sensations of crawling or movement under the skin.
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And these patients believed they were infected with insects.
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And so Ekbaum determined that this was all caused by a mental disorder or illness or delusions.
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And so what's interesting is that some of those subjects actually tested positive for syphilis.
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And we know syphilis is in the same family as Lyme disease.
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So it is kind of interesting to see that there is some infectious disease, um, historical accounts.
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But so over time, all these kind of syndromes have been kind of clumped into Morgelan's disease, which was which has been clumped into a delusional condition.
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You and I know that there are people in the Morgellan's world, their families are leaving them.
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You know, they don't believe them.
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And unless there is a clinical diagnosis from an MD versus an ND or anything else, people are taking their lives, people are losing their families, and you know, it's it's not okay.
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It's it's hard.
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I know that you see the impact that it has on your patients and and how it affects us, not only physically, spiritually, emotionally, financially.
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What are some of the ways that you andor your clinic, you know, take care of the Moragellans patients in that way?
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Yeah, well, I think the, first of all, being told that you have a psychiatric condition when it's actually physical or somatic, I think it's completely life-shattering for many patients.
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Like you said, many of whom lose their jobs, lose their family, or contemplate or commit suicide.
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And many of these individuals have lost complete trust in the medical system and maybe stop going to doctors altogether, even if they have a separate medical condition that requires care.
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Um, so I mean, I think what you can do is really provide the patients with um with the evidence we currently have, um, believe what they're saying and treat them accordingly to what they have.
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And I think just being there as a provider to listen to them and to help guide them through the process, I think means a lot to patients who have been completely dismissed by the medical community.
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I think one of the most positive things, certainly out of the pandemic, has certainly been telehealth.
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And so the beauty there is just that a lot of folks have been reaching out to connect with me to look for resources and things like that.
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And the beauty is that, you know, I can send them to you, you know, but they live in Kentucky or Florida.
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So it definitely, it's just like that, that little bright light that we oftentimes need when we have negative strength left.
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Just knowing that you have a safe place to go in a in a clinical setting where you're heard, seen, and believed is it's a gift.
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And um, and it shouldn't be a gift.
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It should be it should be the standard of care.
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It should be standard of care.
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And so, you know, but that's why we're having this conversation and that's why we're trying to move the needle forward.
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I'm curious, can you talk a little bit about your diagnostic tool that you created?
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So I I went to UCSF for my doctor of nursing practice several years back.
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And at that point, I had been diagnosing and treating patients affected by tick-borne disease for nearly 10 years, and I was pretty disheartened by the lack of awareness regarding Morgellan's disease, despite the plethora of peer-reviewed published literature that was publicly available.
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So I decided to get my DNP at UCSF just to really specifically discover what needed to be done to change the current standards of care.
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Um, and so through my education and working closely with the faculty at the School of Nursing, I discovered that it's really not just scientific literature, but it's really systematic reviews or rigorous research papers that allow you to develop evidence-based protocols for diagnosis and treatment.
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And so, in other words, the scientific papers that we already had published, they needed to be translated and applied into practice in the form of evidence-based guidelines because medicine is currently driven by these guidelines.
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And so, my DNP project, um, it was a quality improvement project.
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And so I implemented an educational intervention to measure pre and post knowledge and confidence in diagnosis in diagnosing Morgellan's disease.
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Um, and what I found is that education and educating clinicians in particular on Morgellan's diagnosis improved their knowledge and confidence in the diagnosis of Morgellan's disease.
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So, pretty straightforward.
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If you educate clinicians, it improves their confidence in diagnosis.
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And so the educational intervention was based on a preliminary diagnostic protocol for Morgellan's disease diagnosis that I developed following a comprehensive review of the literature with the help of a UCSF librarian and obviously the faculty there.
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And so I'm currently working on publishing those findings.
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So right now I'm just looking for a journal who is um willing to.
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Awesome.
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Yeah.
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That's fantastic.
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Yeah.
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And so hopefully we can go from there and it will at least provide some preliminary guidelines for clinicians interested in diagnosis.
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Did you find it difficult trying to build like credibility with some of your peers?
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You know, um the school of nursing at UCSF was completely on board with my project because it's based, yeah, it's based on published scientific evidence.
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Um yeah, so the credibility really followed because I could always back up my proposals with literature.
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And in fact, all the faculty and my classmates thought it was such a fascinating disease and were really excited to learn about it.
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And my project, it won the DNP Award at graduation.
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And I was yeah, thanks.
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And I was selected to present at the UCSF Clinical Inquiry Conference.
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So I mean, it was it was well received and and there are people interested in this.
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So that's what's that's what's that's what's great is you know, I think the more awareness we can get out there, the more people are gonna get on board with it.
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My derm here in Portland, um, you know, he he sees more Jollens patients.
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And I asked him, you know, about barriers.
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And he said, I I don't really try with the seasoned clinicians anymore, but he's like, I, you know, I have we're a teaching hospital, I have my residence, that's where I start.
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So it's kind of like you with the nursing program as well, knowing that that cluster is gonna go out in the world and they're gonna be familiar with it and they're gonna at least pay it forward and be kind.
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You know, they may not know everything, yeah, but yeah, but they're gonna be kind.
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You know, and and remember your, you know, your did you do a dissertation?
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Was it your dissertation?
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It's just called a DNP project, but yeah, presentation, they were all familiar with my project, so all of them knew everything about it.
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They probably know more than most of the dermatologists out there.
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So wow, that's that's that's fantastic.
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Congratulations.
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Yeah.
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Um when do you think that that might be out?
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Um, I would hope within the next year, but you never know.
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So I mean it's it's all ready to go.
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It's just kind of making final changes.
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Yeah.
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And so in the current situation, say as it relates to infectious diseases, Lyme and Morgelens, where do you see some of the biggest gaps in research?
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And what about understanding?
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Things like that.
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Where are some of the gaps that you see?
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Yeah, kind of like what we talked about.
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I think the biggest gaps are knowledge gaps, just lack of knowledge about Lyme disease, chronic Lyme disease, and their association with Morgelins disease.
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You know, um, this has this has really stalled any funding for research towards these illnesses.
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And it's crazy because there's almost 500,000 new cases of Lyme disease every year in the United States.
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And like we had mentioned earlier, approximately six.
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Percent of those patients will develop morgellens disease.
00:22:03.519 --> 00:22:15.599
And so that's around 30,000 new cases of morgellin's disease every year, which is twice as common as pediatric cancer and six times more common than ALS or amylotrophic lateral sclerosis.
00:22:15.759 --> 00:22:20.880
And so at this point, I mean, we can definitely say morgellens is a neglected disease.
00:22:21.039 --> 00:22:34.079
And, you know, fortunately, our HHS secretary has recently placed a priority on funding our understanding of Lyme disease since he has family members who've been affected by it.
00:22:34.240 --> 00:22:38.960
So I think that's a start, but we definitely have a long way to go.
00:22:39.759 --> 00:22:40.720
Yeah, I agree.
00:22:40.880 --> 00:22:41.839
But it is exciting.
00:22:42.000 --> 00:22:46.240
It's nice to see Lyme getting recognized in the way.
00:22:46.319 --> 00:22:52.640
And actually, some senators and some other other Congress folks that have actually been really vocal.
00:22:52.880 --> 00:22:54.400
I tell people it helps.
00:22:54.480 --> 00:23:06.079
You know, I know, you know, oftentimes you'll hear kind of, you know, people in support groups that'll be moan, like say when, you know, Justin Timberlake got diagnosed, and it's like, oh, well, he can afford everything.
00:23:06.240 --> 00:23:10.079
But the thing is, is it's like, yep, he can afford to get treatment.
00:23:10.240 --> 00:23:18.400
But the reality is, is that him going public, again, people are going to see us, they're going to hear us, you know.
00:23:18.640 --> 00:23:20.799
Um, and it matters.
00:23:21.119 --> 00:23:24.240
You know, we don't have to like it, but it does matter.
00:23:24.559 --> 00:23:28.319
People, you know, with a public persona can help us.
00:23:28.640 --> 00:23:37.759
And for some of those folks too, like even like Abraham Levine, for example, has, you know, you know, her own foundation and helps support research and things like that.
00:23:37.920 --> 00:23:43.359
It is, it makes me hopeful for Lyme moving forward.
00:23:43.599 --> 00:23:55.519
And then hopefully, you know, we can kind of piggyback more more gelins off of that um to hopefully it affect change in policy and get people to see us.
00:23:55.680 --> 00:24:03.519
And then, you know, to have a tool that you created, you know, for for clinicians out there in the world be would be wonderful.
00:24:03.759 --> 00:24:05.279
It'd be it'd be amazing.
00:24:05.519 --> 00:24:21.519
I would imagine that your attention to patient care is probably pretty careful, just knowing that probably by the time that the individual patient finds you, they may be exhausted 10 to 20 clinicians to get to you.
00:24:21.759 --> 00:24:25.279
They're timid, they probably want to cry.
00:24:25.519 --> 00:24:35.119
Um, you know, um, what is what's the patient care like for you when when you see your patients or have a new patient?
00:24:35.599 --> 00:24:47.279
Yeah, I think, you know, just patient care in general, you know, it's providing holistic quality care to prevent patients suffering through misdiagnosis and mismanagement.
00:24:47.440 --> 00:24:54.079
Um, and so when treating patients, I try to live by the golden rule and treat them as I would like to be treated myself.
00:24:54.240 --> 00:25:06.319
And so I think providing patients with a safe space, empathy, active listening, and allowing them to participate in their plan of care, I think it really holds a lot of value.
00:25:06.559 --> 00:25:18.240
Because I think just coming from, like you said, 10 to 20 plus other clinicians where they're getting dismissed and misdiagnosed, it's completely unsettling and um belittling.
00:25:18.400 --> 00:25:22.960
And yeah, like you said, a lot of patients cry because they're just so exhausted.
00:25:23.039 --> 00:25:28.720
And to finally be heard really is quite wonderful for them and their experiences.
00:25:30.000 --> 00:25:31.680
It is, it's quite a release.
00:25:31.759 --> 00:25:35.279
It's it's hard to describe when when you get to that safe place.
00:25:35.440 --> 00:25:43.119
I remember when I first met my my clinician, and then she shared that she actually had Lyme and Morgelins as well.
00:25:43.200 --> 00:25:46.640
And I just thought to myself, I'd never met anybody else.
00:25:46.720 --> 00:25:50.799
And I just I cried and cried and I just couldn't believe it.
00:25:51.039 --> 00:25:53.839
I just, you know, it was like you do.
00:25:54.400 --> 00:26:09.039
And so it, you know, it definitely also forms kind of a unique bond because not everybody has morellens, and you know, it's not like she can have these conversations with everybody on the regular either, you know?
00:26:09.359 --> 00:26:17.440
So she's kind of doing her own discovery as well when she's in remission or out of remission and what works and kind of what doesn't work.
00:26:17.759 --> 00:26:20.480
So that's that's been kind of interesting.
00:26:20.799 --> 00:26:28.960
Is there any um kind of general like treatment protocol that you choose?
00:26:29.119 --> 00:26:38.240
I mean, I know we're all individuals, but generally speaking, do you have a protocol um that you generally start patients on?
00:26:38.559 --> 00:26:39.440
And what is that?
00:26:39.599 --> 00:26:44.480
So I would imagine there's oral, I would imagine there's probably topical things like that.
00:26:44.640 --> 00:26:47.440
Can you kind of share a little bit about that?
00:26:48.000 --> 00:26:48.799
Yeah, yeah.
00:26:48.880 --> 00:26:53.920
So I mean, when when patients first come into the office, you know, of course, we conduct labs.
00:26:54.000 --> 00:26:59.599
So we we usually run tick-borne disease testing to determine what tick-borne disease they have.
00:26:59.759 --> 00:27:05.599
We we prefer IGNIX because IGenics has pre-reviewed published literature on their specificity and sensitivity.
00:27:05.759 --> 00:27:09.119
So I think that they're the best test you can you can get.
00:27:09.279 --> 00:27:18.079
Um, so once you find out and identify what the patient actually has, then you treat accordingly, just like you would with any any patient with chronic Lyme disease.
00:27:18.319 --> 00:27:25.759
So we usually use, you know, oral medications, unless, you know, IV is indicated for severe neurologic cases.
00:27:25.920 --> 00:27:30.640
But usually, but but treating morgelins, you know, it's treating the underlying infection.
00:27:30.880 --> 00:27:34.000
So it's getting rid of of what you have.
00:27:34.160 --> 00:27:38.079
And as you get rid of that, your symptoms improve.
00:27:38.400 --> 00:27:44.240
Um, we don't always necessarily use specific topicals, they're different things that that work.
00:27:44.480 --> 00:27:48.000
One thing might work for one patient, one thing might work for the next.
00:27:48.079 --> 00:27:56.640
So sometimes it's a little bit trial by error, but there is kind of a standard antibiotic protocol that we use to address the tick-borne disease that we identify.
00:27:56.880 --> 00:28:00.480
And again, as you clear out the infection, symptoms improve.
00:28:00.640 --> 00:28:02.880
Of course, symptom control is also important.
00:28:02.960 --> 00:28:07.519
So you're also treating symptoms, and as the symptoms improve, you can withdraw those medications.
00:28:07.680 --> 00:28:18.400
But in general, we usually just stick to oral antibiotics, sometimes, you know, antiparasitics or antimalarial type medication, depending on what's there.
00:28:19.279 --> 00:28:23.920
What do you generally like for more neurological Lyme?
00:28:24.880 --> 00:28:32.160
Yeah, so so the literature shows that intravenous antibiotics work best for neurologic Lyme disease.
00:28:32.240 --> 00:28:38.880
And the literature shows it takes at least six to 12 months of intravenous antibiotics for severe neurologic cases.
00:28:39.039 --> 00:28:50.960
So those are patients who can't remember their friend's name, get lost when they're in the car, maybe present with more of a multiple sclerosis or ALS like profile.
00:28:51.200 --> 00:28:54.400
So we're talking kind of more severe neurologic cases.
00:28:54.559 --> 00:29:01.200
Now, as far as just like brain fog, cognitive issues, you know, your standard fatigue that you would see.
00:29:01.359 --> 00:29:05.519
Um, usually patients do quite well with with oral antibiotics.
00:29:06.400 --> 00:29:06.720
Okay.
00:29:07.119 --> 00:29:07.440
Okay.
00:29:07.839 --> 00:29:08.400
It's interesting.
00:29:08.480 --> 00:29:10.720
I'm checking off all the boxes as you're talking to.
00:29:10.960 --> 00:29:12.960
I'm like, okay, I've done I've done that.
00:29:13.279 --> 00:29:13.839
I've done that.
00:29:14.319 --> 00:29:17.920
Because mine, mine definitely manifested cognitively for me.
00:29:18.079 --> 00:29:21.279
I didn't have it in my joints at all, you know.
00:29:21.519 --> 00:29:30.720
So I feel really grateful, but you know, I didn't enjoy it being so heavily, you know, uh foggy in my brain.
00:29:30.880 --> 00:29:33.839
I mean, um it was quite the journey.
00:29:35.759 --> 00:29:37.200
You know, and and brain fog.
00:29:37.359 --> 00:29:40.799
So I mean, those are those are classic Lyme symptoms.
00:29:40.880 --> 00:29:43.759
And so you have to treat the infection to get rid of it.
00:29:44.160 --> 00:29:46.480
What about um patients?
00:29:46.559 --> 00:29:53.920
You know, some some patients have it like pretty significant in their eyes, and some have lost sight.
00:29:54.480 --> 00:30:03.519
Um, do how do you generally treat patients that have it so significantly in their eyes?
00:30:03.680 --> 00:30:05.759
I've had a lot of questions around that.
00:30:05.920 --> 00:30:12.160
And so again, I know it's treating the underlying condition, but I don't know, do you can you elaborate a little bit?
00:30:12.720 --> 00:30:17.680
Yeah, I I think it depends on what the specific symptom is of the eyes.
00:30:17.759 --> 00:30:26.640
Like if we're talking about filaments or fibers or kind of, you know, the debris coming out of the eyes, um, that can be a little bit more challenging to treat.
00:30:26.799 --> 00:30:30.319
Sometimes, you know, prescription eye drops can help.
00:30:30.480 --> 00:30:39.759
But again, like you said, it's treating the underlying infection because you're so I guess your skin and your GI tract are lined with very similar cells.
00:30:39.920 --> 00:30:48.480
So a lot of these mucosal kind of areas like your mouth and your nose, your eyes can all be affected because they have keratinocytes and fibroblasts.
00:30:48.720 --> 00:30:51.839
You are producing these proteins atypically.
00:30:52.000 --> 00:30:57.839
Um, and so really you see a lot of the debris coming out in these different orifices.
00:30:58.000 --> 00:31:03.599
And so it's treating the underlying infection and providing comfort to the sites that that are affected.
00:31:03.759 --> 00:31:11.839
And sometimes prescription topicals can be helpful, though I haven't found something that that works wonders for those types of symptoms.
00:31:12.160 --> 00:31:17.920
Yeah, I was diagnosed, the very first diagnosis I got was my bomium gland dysfunction.
00:31:18.160 --> 00:31:20.160
I was just grateful to get a diagnosis.
00:31:20.240 --> 00:31:24.559
It wasn't that, but I was literally like, oh, I have that, you know.
00:31:24.960 --> 00:31:25.599
Yep, yep.
00:31:25.839 --> 00:31:32.960
Obviously, that was just not only not the right diagnosis, but obviously just the tip of the iceberg.
00:31:33.119 --> 00:31:39.599
But initially I was doing like these sustain drops that were like preservative free.
00:31:39.839 --> 00:31:46.480
Um, so I do have people kind of reaching out to me asking me questions around eye drops and things like that.
00:31:46.720 --> 00:31:50.480
I usually just sort of refer them in that direction, but I'm not a clinician.
00:31:50.559 --> 00:32:08.880
So, you know, I'm yeah, yeah, I I don't like finding finding a clinician that you like to work with, I think is really important for patients because even when you you go on your treatment journey, clinicians have different philosophies for how to treat and you will encounter this because again, there is no standard of care.
00:32:08.960 --> 00:32:13.680
So you're going to come across clinicians who treat one way over there and another way over there.
00:32:13.759 --> 00:32:16.319
And so it's really finding somebody that you like to work with.
00:32:16.480 --> 00:32:27.200
And I'm sure there are clinicians who prescribe, you know, different things, and and but yeah, it's finding somebody who will prescribe a medication for you based off your needs because everybody's very different.
00:32:27.519 --> 00:32:32.480
I know that you guys do telehealth for for more more gelens patients.
00:32:32.720 --> 00:32:45.759
So um, you know, I I definitely want to make sure that people that are listening that are still in need of, you know, clinical support, appropriate clinical support that is knowledgeable.
00:32:45.920 --> 00:32:50.240
Um, you know, um Melissa Fessler and and Dr.
00:32:50.400 --> 00:32:53.519
Stricker, um, and then your clinic as well.
00:32:53.759 --> 00:33:01.759
There are so many people that are just literally like they're screaming and crying for support.
00:33:02.160 --> 00:33:04.240
I know, I know it's it's awful.
00:33:04.480 --> 00:33:08.960
Well, like like I mentioned earlier, it's 30,000 a year, potentially, and maybe more.
00:33:09.680 --> 00:33:17.359
Well, yeah, because if you think about it, I mean the CDC says it's 476,000, but we know that that's grossly negligent.
00:33:17.759 --> 00:33:18.000
Exactly.
00:33:18.240 --> 00:33:23.759
So then if you if you even close that exactly, so if you even double that, right?
00:33:24.079 --> 00:33:24.480
Exactly.
00:33:24.640 --> 00:33:25.039
Uh-huh.
00:33:25.359 --> 00:33:28.400
So it's yeah, it's ridiculous.
00:33:28.960 --> 00:33:33.920
Hundreds of thousands of people right now are probably looking for for help.
00:33:34.720 --> 00:33:38.400
Well, and the thing is too, is you you know, you mentioned the canines earlier.
00:33:38.559 --> 00:33:54.480
And I don't know if people, you know, are aware, but you know, their dogs, their cats, I mean, the on the support groups, there's millions of people sharing photos of their furry pets that are just absolutely infested with morellens.
00:33:54.720 --> 00:33:59.519
And I mean, I just my heart goes out to them.
00:33:59.759 --> 00:34:00.559
Oh, I know.
00:34:00.799 --> 00:34:01.839
I know, I know.
00:34:02.079 --> 00:34:07.200
What's nice though is you know, veterinarians are a little bit more familiar with tick-borne disease.
00:34:07.279 --> 00:34:12.320
So often they will be willing to work with you and your pets.
00:34:12.719 --> 00:34:17.519
And so sometimes they will they'll prescribe, you know, like three months worth of an antibiotic.
00:34:17.599 --> 00:34:20.159
And dogs, they respond really well.
00:34:20.320 --> 00:34:22.960
Dogs and cats, they respond really well to antibiotic therapy.
00:34:23.039 --> 00:34:26.320
They don't need the same length of treatment as usually humans do.
00:34:26.480 --> 00:34:31.039
Usually it's a little bit shorter course to really see resolution of symptoms.
00:34:31.360 --> 00:34:32.719
What a journey this has been.
00:34:32.800 --> 00:34:35.599
I I'm just grateful to be on this other side now.
00:34:35.760 --> 00:34:36.400
I really am.
00:34:36.559 --> 00:34:43.039
I mean, there I I would have never been able to do this because cognitively I wouldn't have been able to have even a conversation.
00:34:43.119 --> 00:34:44.079
And I still struggle.
00:34:44.159 --> 00:34:48.400
I mean, I'd say I'm about 85%, but 85% is pretty good.
00:34:48.559 --> 00:34:55.760
I still would like to, you know, continue to to to heal, but I I know I'm on the right trajectory.
00:34:56.079 --> 00:35:14.960
Um and then, you know, certainly I know this podcast is healing in ways that, you know, I don't think that I'm that I'm aware of, but honestly, just sharing, yeah, sharing my truth, yep, our truth, is is huge for the soul.
00:35:15.360 --> 00:35:15.599
Yeah.
00:35:15.760 --> 00:35:20.480
And and I do think that, you know, it's almost like I can feel it in a way.
00:35:20.960 --> 00:35:22.320
I can definitely feel it.
00:35:22.559 --> 00:35:34.719
When you think about work in in this line and uh, you know, staying the course of Morgellins and Morgellan's patients and Lyme and and all the things, what gives you hope is you continue this work?
00:35:34.960 --> 00:35:47.920
What keeps you continuing to to advocate for us and continuing to work on improving your protocols on helping Morgellan's patients?
00:35:48.320 --> 00:35:52.639
Yeah, you know, I'd have to say my patients are my greatest motivators.
00:35:52.880 --> 00:35:59.920
Um I I feel like I'm failing them if I'm not pushing forward with researching.
00:36:00.159 --> 00:36:11.280
And so, you know, when I think about, you know, publishing my research or my my project findings, um, I'm doing it for the patients, um, for the Morjellans community.
00:36:11.840 --> 00:36:16.400
Um yeah, I think they're they're my greatest motivators moving forward.
00:36:16.639 --> 00:36:18.800
And just, you know, all my patients.
00:36:19.039 --> 00:36:20.719
Like I feel like they they need me.
00:36:20.960 --> 00:36:23.280
And so Oh, we need you.
00:36:24.079 --> 00:36:25.280
I can vouch.
00:36:26.079 --> 00:36:27.840
I mean, I'm just so grateful.
00:36:28.000 --> 00:36:34.400
I mean, I know that everybody else watching is is gonna feel the same way once they meet you.
00:36:34.559 --> 00:36:36.159
And it it's gonna give them hope.
00:36:36.320 --> 00:36:44.079
They're gonna see that like, you know, there are clinicians that truly do believe in us and want to support us.
00:36:44.239 --> 00:36:48.239
And and um curious about learning.
00:36:48.320 --> 00:36:50.880
Yeah, we're we're still open to learning about it.
00:36:51.119 --> 00:36:52.639
Yeah, thank goodness.
00:36:53.039 --> 00:36:53.679
Thank you.
00:36:54.079 --> 00:36:54.480
Yes.
00:36:54.719 --> 00:36:58.800
Well, I wanted to say thank you so much for being um on the show today.
00:36:58.960 --> 00:37:01.679
I I can't thank you enough for all that you do for us.
00:37:01.840 --> 00:37:07.360
And I look forward to seeing uh your protocol released uh once that happens.
00:37:07.440 --> 00:37:23.039
And I'd love to actually have you on again once that does happen to kind of maybe talk about, you know, I mean, I would love to see it in our healthcare system as a best practice, right?
00:37:23.679 --> 00:37:28.960
The tool used as as a best practice for clinicians out there.
00:37:29.119 --> 00:37:30.559
That would be really nice.
00:37:30.880 --> 00:37:31.280
Great.
00:37:31.360 --> 00:37:34.239
Well, I I look forward to our future conversation then.
00:37:34.559 --> 00:37:34.880
Yeah.
00:37:35.039 --> 00:37:35.360
All right.
00:37:35.440 --> 00:37:38.639
Well, thank you so much for joining us today and have a great day.
00:37:38.880 --> 00:37:39.280
Thank you.
00:37:39.440 --> 00:37:40.880
Thank you for having me, Britt.
00:37:41.440 --> 00:37:41.840
Thank you.
00:37:42.079 --> 00:37:45.199
Thank you so much for tuning in to What the Morgugs podcast.
00:37:45.360 --> 00:37:47.199
I'm beyond grateful that you're here.
00:37:47.280 --> 00:37:50.239
And thank you so much for being a part of the special community.
00:37:50.480 --> 00:37:59.199
To learn more, you can visit us at whatthemorgues.com and you can follow us on Facebook and Instagram at WhatThemorgues Podcast.
00:37:59.360 --> 00:38:01.440
Thank you so much for tuning in.
00:00:00.160 --> 00:00:06.240
Hi, I'm Britt German, host of What the Morgs podcast, and I am so happy that you're here.
00:00:06.480 --> 00:00:12.240
This podcast is dedicated to raising awareness for both Lyme and Morgellan's disease.
00:00:12.400 --> 00:00:20.239
I promise to give you authentic conversation, lived experiences, and expert interviews with people in the medical community.
00:00:20.480 --> 00:00:22.640
I'm so grateful that you're here.
00:00:22.800 --> 00:00:24.480
Thank you so much for tuning in.
00:00:24.640 --> 00:00:34.399
In an overview, it's really my opinion that lack of research, lack of education, lack of standardized protocols for diagnosis and treatment are contributing towards this misunderstanding.
00:00:34.640 --> 00:00:46.240
That's around 30,000 new cases of Morgelin's disease every year, which is twice as common as pediatric cancer and six times more common than ALS or amylotrophic lateral sclerosis.
00:00:46.399 --> 00:00:50.159
I mean, we can definitely say morgellins is a neglected disease.
00:00:50.320 --> 00:00:52.479
What gives you hope as you continue this work?
00:00:52.799 --> 00:00:55.520
My patients are my greatest motivators.
00:00:55.679 --> 00:01:01.200
I feel like I'm failing them if I'm not pushing forward with researching.
00:01:01.520 --> 00:01:05.920
Hello and welcome to another episode of What the Morgs podcast.
00:01:06.159 --> 00:01:09.200
Today I am joined by Melissa Fessler.
00:01:09.280 --> 00:01:17.200
She's a board-certified family nurse practitioner, doctor of nursing practice, and Morgelans researcher.
00:01:17.359 --> 00:01:30.719
Her work focuses on improving diagnostic protocols and advancing clinical understanding of Morgelin's disease with the goal of bringing greater clarity, recognition, and consistency to how it is diagnosed and treated.
00:01:30.959 --> 00:01:47.840
While completing her Doctor of Nursing Practice at UCSF, she developed the first evidence-based preliminary diagnostic protocol for Morgellan's disease, a condition that is often misunderstood, misdiagnosed, and frequently dismissed within the medical system.
00:01:48.000 --> 00:01:54.959
Melissa continues to advance research in this space with a focus on shaping future diagnostic guidelines.
00:01:55.200 --> 00:01:57.359
Melissa, thank you so much for joining me today.
00:01:57.439 --> 00:02:08.479
I'm really looking forward to learning from your research, your advocacy, and experience, helping move the needle in improving the diagnosis and understanding of Morgellan's disease.
00:02:08.639 --> 00:02:10.080
Thank you for being here today.
00:02:10.479 --> 00:02:12.159
Oh, thank you, Britt, for having me.
00:02:12.240 --> 00:02:14.400
I'm looking forward to our conversation.
00:02:15.120 --> 00:02:16.319
Me too.
00:02:16.960 --> 00:02:21.120
So my first question is I'd love to start at the beginning.
00:02:21.280 --> 00:02:27.840
Um, can you tell me a little bit about your background and what pulled you into infectious diseases?
00:02:28.159 --> 00:02:29.199
Yeah, good question.
00:02:29.439 --> 00:02:36.639
So my undergraduate degree is actually in medical and public health microbiology and minor in biotechnology.
00:02:36.719 --> 00:02:39.360
So I always wanted to work in infectious disease.
00:02:39.520 --> 00:02:43.199
I did some research in virology while getting my undergraduate degree.
00:02:43.360 --> 00:02:45.039
And then I went to nursing school.
00:02:45.120 --> 00:02:52.800
After nursing school, I worked quickly in dermatology before entering my nurse practitioner master's at Georgetown.
00:02:52.960 --> 00:02:59.360
And when I graduated, there was an opportunity to work in Lyme disease with Dr.
00:02:59.439 --> 00:03:02.719
Raphael Stricker, who I think you spoke with previously.
00:03:02.879 --> 00:03:06.400
And I had seen that he had been past president of ILADS.
00:03:06.560 --> 00:03:10.319
And I thought, oh wow, what a great opportunity to learn about Lyme disease.
00:03:10.479 --> 00:03:16.960
Because I, even coming from a microbiology background, it was just like a quick little paragraph in a textbook.
00:03:17.120 --> 00:03:18.400
You don't really learn much about it.
00:03:18.560 --> 00:03:21.439
You don't learn much about it in school either.
00:03:21.599 --> 00:03:28.319
So I was really curious to see to learn more about the disease, learn how it's treated.
00:03:29.199 --> 00:03:31.840
And so in that opportunity to present it, I started working with Dr.
00:03:31.919 --> 00:03:32.400
Stricker.
00:03:32.560 --> 00:03:37.360
And that's actually when I learned that Morgelins disease is associated with Lyme disease.
00:03:37.439 --> 00:03:40.560
And so that's really what got me into this field.
00:03:41.280 --> 00:03:43.840
Well, I glowed you, I'm glad you found us.
00:03:44.080 --> 00:03:51.120
What made you kind of maybe want to dive deeper into Lyme and Moore gelens?
00:03:51.280 --> 00:03:57.919
Was there any sort of moment that shifted your perspective or were you studying something in particular?
00:03:58.319 --> 00:03:58.719
Yeah.
00:03:58.879 --> 00:04:01.520
So well, so the clinic that I was working at with Dr.
00:04:01.680 --> 00:04:08.879
Stricker, we saw patients with Lyme disease and people who uh or gelins disease would also contact the clinic and be seen.
00:04:09.120 --> 00:04:18.079
And so when we examined patients with more gelin's disease and ran the test, these patients were also testing positive for Lyme disease and other associated tick-borne diseases.
00:04:18.160 --> 00:04:22.240
So it was really just by by chance that we were also seeing patients with more gelins.
00:04:22.399 --> 00:04:25.759
And it actually is the same treatment as your normal Lyme patient.
00:04:25.920 --> 00:04:30.800
So it was just kind of happenstance that I started treating Morgelins patients as well.
00:04:30.879 --> 00:04:37.360
Um, our clinic, we have about 6% patients come in with more gelin's disease.
00:04:39.279 --> 00:04:43.439
So, and that's interesting too, because that's kind of around the national average, too, right?
00:04:43.519 --> 00:04:48.399
They say that of the Lyme patients, about 6% actually have more gelins.
00:04:48.720 --> 00:04:51.360
So that's actually what you're seeing in clinic as well.
00:04:51.680 --> 00:05:01.680
Yes, and we actually published that study looking at kind of our clinical population of patients, and we actually came to the 6% conclusion based off our clinical data.
00:05:01.759 --> 00:05:08.720
And then Peter Main, um, he also published a paper prior to us finding that he also had 6% of his patients.
00:05:08.800 --> 00:05:17.040
So we actually now have two peer-reviewed studies showing that at least 6% of patients with Lyme disease also have Morgellins disease.
00:05:17.439 --> 00:05:27.199
For for maybe some folks that may not be familiar with morgellins, how would you explain morgellens in your own words?
00:05:28.160 --> 00:05:38.079
Yeah, so morgellin's disease, it's a bizarre dermatologic condition characterized by filaments embedded within or protruding from the skin.
00:05:38.240 --> 00:05:49.120
Um the filaments are composed of normal human proteins such as keratin and collagen that are being produced atypically from the skin cells, specifically keratinocytes and fibroblasts.
00:05:49.360 --> 00:05:58.240
Um, this atypical production is what possibly creates the crawling, stinging, or biting sensations that patients might experience.
00:05:58.480 --> 00:06:05.360
These symptoms may also be accompanied by spontaneously appearing or slowly healing lesions that contain these filaments.
00:06:05.519 --> 00:06:19.360
And Morgellan's disease, as kind of mentioned previously, is predominantly associated with spirochetal infections, specifically species of borelia, which is the causative agent of Lyme disease and tick-borne relapsing fever.
00:06:19.600 --> 00:06:28.959
Though there have been other non-tick-borne pathogens contributing towards the disease process that have been identified, such as Helicobacter pylori and trepanema species.
00:06:29.600 --> 00:06:45.439
So, what I usually tell patients when they come to me is that Lyme disease itself causes a constellation of symptoms that present across the spectrum from cardiovascular to musculoskeletal to neurologic, and in this case, dermatologic.
00:06:45.680 --> 00:06:56.160
So, in other words, Morgellan's disease is really the skin manifestation of Lyme disease, and more specifically, chronic Lyme disease, which is infection that has persisted beyond three to six months.
00:06:58.079 --> 00:06:58.560
Interesting.
00:06:58.639 --> 00:07:01.279
I've never quite heard it in those specific terms.
00:07:01.439 --> 00:07:09.040
It's just it's refreshing to hear some clinical uh facts.
00:07:09.439 --> 00:07:11.199
It it really is refreshing.
00:07:11.839 --> 00:07:12.879
Yeah, yeah, yeah.
00:07:12.959 --> 00:07:18.319
So you have to symptoms associated with Lyme, and then we have a the dermatologic symptoms.
00:07:18.399 --> 00:07:22.240
So when the infection affects the skin, your skin has its own immune system.
00:07:22.480 --> 00:07:29.199
And so when your skin is infected with borrelia, we potentially are seeing what we call Morgelins disease.
00:07:29.439 --> 00:07:35.120
So that that's what we believe it is currently, is basically skin manifestation of an underlying infection.
00:07:36.480 --> 00:07:48.560
Well, it's it's fascinating because I know you know just as well as I do that there is a whole host of idea ideas and theories on, you know, Morgelins and its manifestation.
00:07:48.800 --> 00:08:10.160
Yeah, it certainly would would be nice to continue to move the clinical needle forward so that those of us, more Morgelins patients that are just even now coming on board, they might be able to, you know, um get actual real solid information, factual clinical protocol.
00:08:11.040 --> 00:08:13.680
Again, there's so many out there.
00:08:13.920 --> 00:08:16.720
Um, but but it is refreshing.
00:08:16.879 --> 00:08:20.959
It's it's very refreshing to make some focus.
00:08:21.519 --> 00:08:37.840
And the reason we know right now that morgellin's disease is associated with infection with borrelia is that we have evidence in the form of peer-reviewed literature that demonstrates patients with Morgellan's disease suffer from chronic infection with tick-borne disease.
00:08:38.080 --> 00:08:46.399
For example, you can directly detect borelia spirochetes, which again are the that's just the spiral-shaped bacteria that that's Lyme disease.
00:08:46.559 --> 00:08:52.159
And you can detect them in nearly 100% of the lesions of patients with Morgellan's disease.
00:08:52.320 --> 00:09:00.159
And so this has been confirmed by different independent laboratories using different molecular and visualization techniques.
00:09:00.320 --> 00:09:09.120
And so, in addition to that peer-reviewed body of evidence on human studies, we actually have animal models for Morgellan's disease, too.
00:09:09.279 --> 00:09:16.399
And so there was actually a paper that looked at dog Morgellan's disease called canine filamentous dermatitis.
00:09:16.480 --> 00:09:30.080
And the authors found that nine dogs with all sorts of lesions containing embedded or protruding filaments that were brightly colored, and all those dogs tested positive for borrelia with the causative agent of Lyme disease.
00:09:30.159 --> 00:09:32.960
And that was all confirmed by five different laboratories as well.
00:09:33.039 --> 00:09:37.039
So we have human models, we have animal models, all peer-reviewed.
00:09:37.200 --> 00:09:40.399
So right now the evidence is pointing towards Lyme disease.
00:09:41.840 --> 00:09:46.480
And those papers, those peer-reviewed papers are accessible for folks.
00:09:46.639 --> 00:09:56.799
So I'm thinking about people that might be, you know, listening and curious, but uh, you know, they can access those peer-reviewed papers.
00:09:57.120 --> 00:10:04.399
Do you have an idea of why you think maybe it's so misunderstood or why it's been dismissed for so long?
00:10:05.200 --> 00:10:09.919
Yeah, I think that there are multiple reasons for the misunderstanding and dismissal.
00:10:10.159 --> 00:10:18.799
Um, for starters, there are many misconceptions just about Lyme disease in general and chronic Lyme disease due to just lack of education, lack of awareness.
00:10:19.039 --> 00:10:25.919
I mean, chronic Lyme disease has historically been dismissed by the CDC and Infectious Disease Society of America.
00:10:26.080 --> 00:10:30.799
And those are experts, you know, that guide clinical practice.
00:10:31.039 --> 00:10:41.440
And so here you have a dermatologic condition, Morgelan's disease, associated with chronic Lyme disease, which has historically been dismissed and said doesn't exist.
00:10:41.919 --> 00:10:49.279
Um, and then secondly, current medical practice has already classified Morgellan's disease as a psychiatric condition.
00:10:49.440 --> 00:11:02.559
So when medical doctors or practitioners encounter a patient with suspect Morgellan's disease, the patient is just automatically referred to the psychiatrist, oftentimes without a proper physical evaluation.
00:11:02.799 --> 00:11:05.279
And this is really the current standard of care.
00:11:05.360 --> 00:11:14.480
And so changing the current medical guidelines for practice, it really does require enormous funding for research and educational outreach.
00:11:14.639 --> 00:11:26.480
And so, kind of just in an overview, it's really my opinion that lack of research, lack of education, lack of standardized protocols for diagnosis and treatment are contributing towards this misunderstanding.
00:11:26.720 --> 00:11:30.879
Yeah, it's it's pretty frustrating, um, I have to say.
00:11:31.120 --> 00:11:40.080
And, you know, you and I know that, you know, a lot of clinicians, I mean, but but I think it goes for most professional experiences.
00:11:40.320 --> 00:11:44.799
People find their groove, um, they don't want to learn new things.
00:11:45.039 --> 00:11:48.720
The CDC said this, so it must be the gospel.
00:11:48.879 --> 00:11:56.399
I mean, they need to get beyond the the delusional parasitosis or the delusional infestation.
00:11:56.480 --> 00:11:59.120
So I'm wondering if you can talk a little bit about that.
00:11:59.360 --> 00:12:03.759
Obviously, that comes up a lot, you know, for obvious reasons.
00:12:04.000 --> 00:12:07.919
Um so can you kind of talk a little bit about that?
00:12:08.159 --> 00:12:12.320
Um, like the delusional parasitosis diagnosis.
00:12:12.799 --> 00:12:13.440
Definitely.
00:12:13.600 --> 00:12:31.360
So, yeah, currently delusional parasitosis or DP, um, it's classified as a delusional disorder in the diagnostic and statistical manual of mental disorders or the DSM5, which is used currently by psychiatrists to diagnose psychiatric disorders.
00:12:31.600 --> 00:12:43.759
And so over the years, Morgellan's disease has become synonymous with these other diagnostic terms, such as delusional parasitosis, delusional infestation, or even Ekbaum syndrome.
00:12:44.000 --> 00:12:51.679
And so the name Morgellan's disease comes from a letter that was written by Sir Thomas Brown in 1674.
00:12:51.919 --> 00:13:03.360
He was an English physician, and the letter contained a brief description of a skin disease in French children, where he described these harsh hairs on their backs and disease he calls the morgelens.
00:13:03.679 --> 00:13:08.559
And so there's also similar historical accounts that refer to the morgelons.
00:13:08.720 --> 00:13:09.279
And Dr.
00:13:09.440 --> 00:13:21.279
Ekbaum, who was a Swedish physician, he published also a series of these case studies in the 1930s describing patients who had sensations of crawling or movement under the skin.
00:13:21.440 --> 00:13:24.720
And these patients believed they were infected with insects.
00:13:24.879 --> 00:13:31.440
And so Ekbaum determined that this was all caused by a mental disorder or illness or delusions.
00:13:31.600 --> 00:13:35.919
And so what's interesting is that some of those subjects actually tested positive for syphilis.
00:13:36.000 --> 00:13:39.120
And we know syphilis is in the same family as Lyme disease.
00:13:39.200 --> 00:13:44.320
So it is kind of interesting to see that there is some infectious disease, um, historical accounts.
00:13:44.559 --> 00:13:57.200
But so over time, all these kind of syndromes have been kind of clumped into Morgelan's disease, which was which has been clumped into a delusional condition.
00:13:57.919 --> 00:14:05.679
You and I know that there are people in the Morgellan's world, their families are leaving them.
00:14:05.840 --> 00:14:07.919
You know, they don't believe them.
00:14:08.240 --> 00:14:22.879
And unless there is a clinical diagnosis from an MD versus an ND or anything else, people are taking their lives, people are losing their families, and you know, it's it's not okay.
00:14:23.120 --> 00:14:24.320
It's it's hard.
00:14:24.559 --> 00:14:35.519
I know that you see the impact that it has on your patients and and how it affects us, not only physically, spiritually, emotionally, financially.
00:14:35.840 --> 00:14:43.600
What are some of the ways that you andor your clinic, you know, take care of the Moragellans patients in that way?
00:14:44.080 --> 00:14:55.759
Yeah, well, I think the, first of all, being told that you have a psychiatric condition when it's actually physical or somatic, I think it's completely life-shattering for many patients.
00:14:56.000 --> 00:15:02.879
Like you said, many of whom lose their jobs, lose their family, or contemplate or commit suicide.
00:15:03.039 --> 00:15:15.039
And many of these individuals have lost complete trust in the medical system and maybe stop going to doctors altogether, even if they have a separate medical condition that requires care.
00:15:15.759 --> 00:15:32.799
Um, so I mean, I think what you can do is really provide the patients with um with the evidence we currently have, um, believe what they're saying and treat them accordingly to what they have.
00:15:33.039 --> 00:15:44.399
And I think just being there as a provider to listen to them and to help guide them through the process, I think means a lot to patients who have been completely dismissed by the medical community.
00:15:44.720 --> 00:15:51.279
I think one of the most positive things, certainly out of the pandemic, has certainly been telehealth.
00:15:51.519 --> 00:15:59.759
And so the beauty there is just that a lot of folks have been reaching out to connect with me to look for resources and things like that.
00:16:00.000 --> 00:16:07.679
And the beauty is that, you know, I can send them to you, you know, but they live in Kentucky or Florida.
00:16:07.919 --> 00:16:17.600
So it definitely, it's just like that, that little bright light that we oftentimes need when we have negative strength left.
00:16:18.000 --> 00:16:27.279
Just knowing that you have a safe place to go in a in a clinical setting where you're heard, seen, and believed is it's a gift.
00:16:27.600 --> 00:16:30.639
And um, and it shouldn't be a gift.
00:16:30.720 --> 00:16:33.440
It should be it should be the standard of care.
00:16:33.919 --> 00:16:35.279
It should be standard of care.
00:16:35.440 --> 00:16:41.440
And so, you know, but that's why we're having this conversation and that's why we're trying to move the needle forward.
00:16:41.600 --> 00:16:47.039
I'm curious, can you talk a little bit about your diagnostic tool that you created?
00:16:47.440 --> 00:16:52.720
So I I went to UCSF for my doctor of nursing practice several years back.
00:16:52.879 --> 00:17:08.640
And at that point, I had been diagnosing and treating patients affected by tick-borne disease for nearly 10 years, and I was pretty disheartened by the lack of awareness regarding Morgellan's disease, despite the plethora of peer-reviewed published literature that was publicly available.
00:17:08.880 --> 00:17:18.799
So I decided to get my DNP at UCSF just to really specifically discover what needed to be done to change the current standards of care.
00:17:19.119 --> 00:17:36.799
Um, and so through my education and working closely with the faculty at the School of Nursing, I discovered that it's really not just scientific literature, but it's really systematic reviews or rigorous research papers that allow you to develop evidence-based protocols for diagnosis and treatment.
00:17:37.039 --> 00:17:52.000
And so, in other words, the scientific papers that we already had published, they needed to be translated and applied into practice in the form of evidence-based guidelines because medicine is currently driven by these guidelines.
00:17:52.240 --> 00:17:58.079
And so, my DNP project, um, it was a quality improvement project.
00:17:58.319 --> 00:18:09.920
And so I implemented an educational intervention to measure pre and post knowledge and confidence in diagnosis in diagnosing Morgellan's disease.
00:18:10.079 --> 00:18:22.160
Um, and what I found is that education and educating clinicians in particular on Morgellan's diagnosis improved their knowledge and confidence in the diagnosis of Morgellan's disease.
00:18:22.240 --> 00:18:23.200
So, pretty straightforward.
00:18:23.279 --> 00:18:27.839
If you educate clinicians, it improves their confidence in diagnosis.
00:18:28.000 --> 00:18:46.240
And so the educational intervention was based on a preliminary diagnostic protocol for Morgellan's disease diagnosis that I developed following a comprehensive review of the literature with the help of a UCSF librarian and obviously the faculty there.
00:18:46.400 --> 00:18:50.000
And so I'm currently working on publishing those findings.
00:18:50.079 --> 00:18:54.480
So right now I'm just looking for a journal who is um willing to.
00:18:54.960 --> 00:18:55.680
Awesome.
00:18:55.920 --> 00:18:56.559
Yeah.
00:18:56.960 --> 00:18:58.480
That's fantastic.
00:18:58.799 --> 00:18:59.039
Yeah.
00:18:59.200 --> 00:19:07.359
And so hopefully we can go from there and it will at least provide some preliminary guidelines for clinicians interested in diagnosis.
00:19:07.839 --> 00:19:14.079
Did you find it difficult trying to build like credibility with some of your peers?
00:19:14.960 --> 00:19:26.400
You know, um the school of nursing at UCSF was completely on board with my project because it's based, yeah, it's based on published scientific evidence.
00:19:26.640 --> 00:19:32.960
Um yeah, so the credibility really followed because I could always back up my proposals with literature.
00:19:33.119 --> 00:19:40.720
And in fact, all the faculty and my classmates thought it was such a fascinating disease and were really excited to learn about it.
00:19:41.200 --> 00:19:45.200
And my project, it won the DNP Award at graduation.
00:19:45.279 --> 00:19:47.440
And I was yeah, thanks.
00:19:47.599 --> 00:19:51.599
And I was selected to present at the UCSF Clinical Inquiry Conference.
00:19:51.680 --> 00:19:55.839
So I mean, it was it was well received and and there are people interested in this.
00:19:55.920 --> 00:20:01.920
So that's what's that's what's that's what's great is you know, I think the more awareness we can get out there, the more people are gonna get on board with it.
00:20:02.240 --> 00:20:07.440
My derm here in Portland, um, you know, he he sees more Jollens patients.
00:20:07.599 --> 00:20:10.880
And I asked him, you know, about barriers.
00:20:11.359 --> 00:20:21.680
And he said, I I don't really try with the seasoned clinicians anymore, but he's like, I, you know, I have we're a teaching hospital, I have my residence, that's where I start.
00:20:21.920 --> 00:20:33.359
So it's kind of like you with the nursing program as well, knowing that that cluster is gonna go out in the world and they're gonna be familiar with it and they're gonna at least pay it forward and be kind.
00:20:33.599 --> 00:20:37.440
You know, they may not know everything, yeah, but yeah, but they're gonna be kind.
00:20:39.359 --> 00:20:43.759
You know, and and remember your, you know, your did you do a dissertation?
00:20:43.839 --> 00:20:44.960
Was it your dissertation?
00:20:45.279 --> 00:20:52.240
It's just called a DNP project, but yeah, presentation, they were all familiar with my project, so all of them knew everything about it.
00:20:52.319 --> 00:20:55.359
They probably know more than most of the dermatologists out there.
00:20:55.519 --> 00:20:59.039
So wow, that's that's that's fantastic.
00:20:59.200 --> 00:21:00.160
Congratulations.
00:21:00.400 --> 00:21:00.720
Yeah.
00:21:01.039 --> 00:21:06.079
Um when do you think that that might be out?
00:21:07.519 --> 00:21:11.519
Um, I would hope within the next year, but you never know.
00:21:11.599 --> 00:21:13.839
So I mean it's it's all ready to go.
00:21:14.000 --> 00:21:16.000
It's just kind of making final changes.
00:21:16.160 --> 00:21:16.480
Yeah.
00:21:16.720 --> 00:21:26.480
And so in the current situation, say as it relates to infectious diseases, Lyme and Morgelens, where do you see some of the biggest gaps in research?
00:21:26.559 --> 00:21:28.480
And what about understanding?
00:21:28.640 --> 00:21:29.519
Things like that.
00:21:29.680 --> 00:21:31.359
Where are some of the gaps that you see?
00:21:31.680 --> 00:21:33.039
Yeah, kind of like what we talked about.
00:21:33.119 --> 00:21:43.039
I think the biggest gaps are knowledge gaps, just lack of knowledge about Lyme disease, chronic Lyme disease, and their association with Morgelins disease.
00:21:43.279 --> 00:21:50.160
You know, um, this has this has really stalled any funding for research towards these illnesses.
00:21:50.319 --> 00:21:57.119
And it's crazy because there's almost 500,000 new cases of Lyme disease every year in the United States.
00:21:57.359 --> 00:21:59.599
And like we had mentioned earlier, approximately six.
00:22:00.240 --> 00:22:03.359
Percent of those patients will develop morgellens disease.
00:22:03.519 --> 00:22:15.599
And so that's around 30,000 new cases of morgellin's disease every year, which is twice as common as pediatric cancer and six times more common than ALS or amylotrophic lateral sclerosis.
00:22:15.759 --> 00:22:20.880
And so at this point, I mean, we can definitely say morgellens is a neglected disease.
00:22:21.039 --> 00:22:34.079
And, you know, fortunately, our HHS secretary has recently placed a priority on funding our understanding of Lyme disease since he has family members who've been affected by it.
00:22:34.240 --> 00:22:38.960
So I think that's a start, but we definitely have a long way to go.
00:22:39.759 --> 00:22:40.720
Yeah, I agree.
00:22:40.880 --> 00:22:41.839
But it is exciting.
00:22:42.000 --> 00:22:46.240
It's nice to see Lyme getting recognized in the way.
00:22:46.319 --> 00:22:52.640
And actually, some senators and some other other Congress folks that have actually been really vocal.
00:22:52.880 --> 00:22:54.400
I tell people it helps.
00:22:54.480 --> 00:23:06.079
You know, I know, you know, oftentimes you'll hear kind of, you know, people in support groups that'll be moan, like say when, you know, Justin Timberlake got diagnosed, and it's like, oh, well, he can afford everything.
00:23:06.240 --> 00:23:10.079
But the thing is, is it's like, yep, he can afford to get treatment.
00:23:10.240 --> 00:23:18.400
But the reality is, is that him going public, again, people are going to see us, they're going to hear us, you know.
00:23:18.640 --> 00:23:20.799
Um, and it matters.
00:23:21.119 --> 00:23:24.240
You know, we don't have to like it, but it does matter.
00:23:24.559 --> 00:23:28.319
People, you know, with a public persona can help us.
00:23:28.640 --> 00:23:37.759
And for some of those folks too, like even like Abraham Levine, for example, has, you know, you know, her own foundation and helps support research and things like that.
00:23:37.920 --> 00:23:43.359
It is, it makes me hopeful for Lyme moving forward.
00:23:43.599 --> 00:23:55.519
And then hopefully, you know, we can kind of piggyback more more gelins off of that um to hopefully it affect change in policy and get people to see us.
00:23:55.680 --> 00:24:03.519
And then, you know, to have a tool that you created, you know, for for clinicians out there in the world be would be wonderful.
00:24:03.759 --> 00:24:05.279
It'd be it'd be amazing.
00:24:05.519 --> 00:24:21.519
I would imagine that your attention to patient care is probably pretty careful, just knowing that probably by the time that the individual patient finds you, they may be exhausted 10 to 20 clinicians to get to you.
00:24:21.759 --> 00:24:25.279
They're timid, they probably want to cry.
00:24:25.519 --> 00:24:35.119
Um, you know, um, what is what's the patient care like for you when when you see your patients or have a new patient?
00:24:35.599 --> 00:24:47.279
Yeah, I think, you know, just patient care in general, you know, it's providing holistic quality care to prevent patients suffering through misdiagnosis and mismanagement.
00:24:47.440 --> 00:24:54.079
Um, and so when treating patients, I try to live by the golden rule and treat them as I would like to be treated myself.
00:24:54.240 --> 00:25:06.319
And so I think providing patients with a safe space, empathy, active listening, and allowing them to participate in their plan of care, I think it really holds a lot of value.
00:25:06.559 --> 00:25:18.240
Because I think just coming from, like you said, 10 to 20 plus other clinicians where they're getting dismissed and misdiagnosed, it's completely unsettling and um belittling.
00:25:18.400 --> 00:25:22.960
And yeah, like you said, a lot of patients cry because they're just so exhausted.
00:25:23.039 --> 00:25:28.720
And to finally be heard really is quite wonderful for them and their experiences.
00:25:30.000 --> 00:25:31.680
It is, it's quite a release.
00:25:31.759 --> 00:25:35.279
It's it's hard to describe when when you get to that safe place.
00:25:35.440 --> 00:25:43.119
I remember when I first met my my clinician, and then she shared that she actually had Lyme and Morgelins as well.
00:25:43.200 --> 00:25:46.640
And I just thought to myself, I'd never met anybody else.
00:25:46.720 --> 00:25:50.799
And I just I cried and cried and I just couldn't believe it.
00:25:51.039 --> 00:25:53.839
I just, you know, it was like you do.
00:25:54.400 --> 00:26:09.039
And so it, you know, it definitely also forms kind of a unique bond because not everybody has morellens, and you know, it's not like she can have these conversations with everybody on the regular either, you know?
00:26:09.359 --> 00:26:17.440
So she's kind of doing her own discovery as well when she's in remission or out of remission and what works and kind of what doesn't work.
00:26:17.759 --> 00:26:20.480
So that's that's been kind of interesting.
00:26:20.799 --> 00:26:28.960
Is there any um kind of general like treatment protocol that you choose?
00:26:29.119 --> 00:26:38.240
I mean, I know we're all individuals, but generally speaking, do you have a protocol um that you generally start patients on?
00:26:38.559 --> 00:26:39.440
And what is that?
00:26:39.599 --> 00:26:44.480
So I would imagine there's oral, I would imagine there's probably topical things like that.
00:26:44.640 --> 00:26:47.440
Can you kind of share a little bit about that?
00:26:48.000 --> 00:26:48.799
Yeah, yeah.
00:26:48.880 --> 00:26:53.920
So I mean, when when patients first come into the office, you know, of course, we conduct labs.
00:26:54.000 --> 00:26:59.599
So we we usually run tick-borne disease testing to determine what tick-borne disease they have.
00:26:59.759 --> 00:27:05.599
We we prefer IGNIX because IGenics has pre-reviewed published literature on their specificity and sensitivity.
00:27:05.759 --> 00:27:09.119
So I think that they're the best test you can you can get.
00:27:09.279 --> 00:27:18.079
Um, so once you find out and identify what the patient actually has, then you treat accordingly, just like you would with any any patient with chronic Lyme disease.
00:27:18.319 --> 00:27:25.759
So we usually use, you know, oral medications, unless, you know, IV is indicated for severe neurologic cases.
00:27:25.920 --> 00:27:30.640
But usually, but but treating morgelins, you know, it's treating the underlying infection.
00:27:30.880 --> 00:27:34.000
So it's getting rid of of what you have.
00:27:34.160 --> 00:27:38.079
And as you get rid of that, your symptoms improve.
00:27:38.400 --> 00:27:44.240
Um, we don't always necessarily use specific topicals, they're different things that that work.
00:27:44.480 --> 00:27:48.000
One thing might work for one patient, one thing might work for the next.
00:27:48.079 --> 00:27:56.640
So sometimes it's a little bit trial by error, but there is kind of a standard antibiotic protocol that we use to address the tick-borne disease that we identify.
00:27:56.880 --> 00:28:00.480
And again, as you clear out the infection, symptoms improve.
00:28:00.640 --> 00:28:02.880
Of course, symptom control is also important.
00:28:02.960 --> 00:28:07.519
So you're also treating symptoms, and as the symptoms improve, you can withdraw those medications.
00:28:07.680 --> 00:28:18.400
But in general, we usually just stick to oral antibiotics, sometimes, you know, antiparasitics or antimalarial type medication, depending on what's there.
00:28:19.279 --> 00:28:23.920
What do you generally like for more neurological Lyme?
00:28:24.880 --> 00:28:32.160
Yeah, so so the literature shows that intravenous antibiotics work best for neurologic Lyme disease.
00:28:32.240 --> 00:28:38.880
And the literature shows it takes at least six to 12 months of intravenous antibiotics for severe neurologic cases.
00:28:39.039 --> 00:28:50.960
So those are patients who can't remember their friend's name, get lost when they're in the car, maybe present with more of a multiple sclerosis or ALS like profile.
00:28:51.200 --> 00:28:54.400
So we're talking kind of more severe neurologic cases.
00:28:54.559 --> 00:29:01.200
Now, as far as just like brain fog, cognitive issues, you know, your standard fatigue that you would see.
00:29:01.359 --> 00:29:05.519
Um, usually patients do quite well with with oral antibiotics.
00:29:06.400 --> 00:29:06.720
Okay.
00:29:07.119 --> 00:29:07.440
Okay.
00:29:07.839 --> 00:29:08.400
It's interesting.
00:29:08.480 --> 00:29:10.720
I'm checking off all the boxes as you're talking to.
00:29:10.960 --> 00:29:12.960
I'm like, okay, I've done I've done that.
00:29:13.279 --> 00:29:13.839
I've done that.
00:29:14.319 --> 00:29:17.920
Because mine, mine definitely manifested cognitively for me.
00:29:18.079 --> 00:29:21.279
I didn't have it in my joints at all, you know.
00:29:21.519 --> 00:29:30.720
So I feel really grateful, but you know, I didn't enjoy it being so heavily, you know, uh foggy in my brain.
00:29:30.880 --> 00:29:33.839
I mean, um it was quite the journey.
00:29:35.759 --> 00:29:37.200
You know, and and brain fog.
00:29:37.359 --> 00:29:40.799
So I mean, those are those are classic Lyme symptoms.
00:29:40.880 --> 00:29:43.759
And so you have to treat the infection to get rid of it.
00:29:44.160 --> 00:29:46.480
What about um patients?
00:29:46.559 --> 00:29:53.920
You know, some some patients have it like pretty significant in their eyes, and some have lost sight.
00:29:54.480 --> 00:30:03.519
Um, do how do you generally treat patients that have it so significantly in their eyes?
00:30:03.680 --> 00:30:05.759
I've had a lot of questions around that.
00:30:05.920 --> 00:30:12.160
And so again, I know it's treating the underlying condition, but I don't know, do you can you elaborate a little bit?
00:30:12.720 --> 00:30:17.680
Yeah, I I think it depends on what the specific symptom is of the eyes.
00:30:17.759 --> 00:30:26.640
Like if we're talking about filaments or fibers or kind of, you know, the debris coming out of the eyes, um, that can be a little bit more challenging to treat.
00:30:26.799 --> 00:30:30.319
Sometimes, you know, prescription eye drops can help.
00:30:30.480 --> 00:30:39.759
But again, like you said, it's treating the underlying infection because you're so I guess your skin and your GI tract are lined with very similar cells.
00:30:39.920 --> 00:30:48.480
So a lot of these mucosal kind of areas like your mouth and your nose, your eyes can all be affected because they have keratinocytes and fibroblasts.
00:30:48.720 --> 00:30:51.839
You are producing these proteins atypically.
00:30:52.000 --> 00:30:57.839
Um, and so really you see a lot of the debris coming out in these different orifices.
00:30:58.000 --> 00:31:03.599
And so it's treating the underlying infection and providing comfort to the sites that that are affected.
00:31:03.759 --> 00:31:11.839
And sometimes prescription topicals can be helpful, though I haven't found something that that works wonders for those types of symptoms.
00:31:12.160 --> 00:31:17.920
Yeah, I was diagnosed, the very first diagnosis I got was my bomium gland dysfunction.
00:31:18.160 --> 00:31:20.160
I was just grateful to get a diagnosis.
00:31:20.240 --> 00:31:24.559
It wasn't that, but I was literally like, oh, I have that, you know.
00:31:24.960 --> 00:31:25.599
Yep, yep.
00:31:25.839 --> 00:31:32.960
Obviously, that was just not only not the right diagnosis, but obviously just the tip of the iceberg.
00:31:33.119 --> 00:31:39.599
But initially I was doing like these sustain drops that were like preservative free.
00:31:39.839 --> 00:31:46.480
Um, so I do have people kind of reaching out to me asking me questions around eye drops and things like that.
00:31:46.720 --> 00:31:50.480
I usually just sort of refer them in that direction, but I'm not a clinician.
00:31:50.559 --> 00:32:08.880
So, you know, I'm yeah, yeah, I I don't like finding finding a clinician that you like to work with, I think is really important for patients because even when you you go on your treatment journey, clinicians have different philosophies for how to treat and you will encounter this because again, there is no standard of care.
00:32:08.960 --> 00:32:13.680
So you're going to come across clinicians who treat one way over there and another way over there.
00:32:13.759 --> 00:32:16.319
And so it's really finding somebody that you like to work with.
00:32:16.480 --> 00:32:27.200
And I'm sure there are clinicians who prescribe, you know, different things, and and but yeah, it's finding somebody who will prescribe a medication for you based off your needs because everybody's very different.
00:32:27.519 --> 00:32:32.480
I know that you guys do telehealth for for more more gelens patients.
00:32:32.720 --> 00:32:45.759
So um, you know, I I definitely want to make sure that people that are listening that are still in need of, you know, clinical support, appropriate clinical support that is knowledgeable.
00:32:45.920 --> 00:32:50.240
Um, you know, um Melissa Fessler and and Dr.
00:32:50.400 --> 00:32:53.519
Stricker, um, and then your clinic as well.
00:32:53.759 --> 00:33:01.759
There are so many people that are just literally like they're screaming and crying for support.
00:33:02.160 --> 00:33:04.240
I know, I know it's it's awful.
00:33:04.480 --> 00:33:08.960
Well, like like I mentioned earlier, it's 30,000 a year, potentially, and maybe more.
00:33:09.680 --> 00:33:17.359
Well, yeah, because if you think about it, I mean the CDC says it's 476,000, but we know that that's grossly negligent.
00:33:17.759 --> 00:33:18.000
Exactly.
00:33:18.240 --> 00:33:23.759
So then if you if you even close that exactly, so if you even double that, right?
00:33:24.079 --> 00:33:24.480
Exactly.
00:33:24.640 --> 00:33:25.039
Uh-huh.
00:33:25.359 --> 00:33:28.400
So it's yeah, it's ridiculous.
00:33:28.960 --> 00:33:33.920
Hundreds of thousands of people right now are probably looking for for help.
00:33:34.720 --> 00:33:38.400
Well, and the thing is too, is you you know, you mentioned the canines earlier.
00:33:38.559 --> 00:33:54.480
And I don't know if people, you know, are aware, but you know, their dogs, their cats, I mean, the on the support groups, there's millions of people sharing photos of their furry pets that are just absolutely infested with morellens.
00:33:54.720 --> 00:33:59.519
And I mean, I just my heart goes out to them.
00:33:59.759 --> 00:34:00.559
Oh, I know.
00:34:00.799 --> 00:34:01.839
I know, I know.
00:34:02.079 --> 00:34:07.200
What's nice though is you know, veterinarians are a little bit more familiar with tick-borne disease.
00:34:07.279 --> 00:34:12.320
So often they will be willing to work with you and your pets.
00:34:12.719 --> 00:34:17.519
And so sometimes they will they'll prescribe, you know, like three months worth of an antibiotic.
00:34:17.599 --> 00:34:20.159
And dogs, they respond really well.
00:34:20.320 --> 00:34:22.960
Dogs and cats, they respond really well to antibiotic therapy.
00:34:23.039 --> 00:34:26.320
They don't need the same length of treatment as usually humans do.
00:34:26.480 --> 00:34:31.039
Usually it's a little bit shorter course to really see resolution of symptoms.
00:34:31.360 --> 00:34:32.719
What a journey this has been.
00:34:32.800 --> 00:34:35.599
I I'm just grateful to be on this other side now.
00:34:35.760 --> 00:34:36.400
I really am.
00:34:36.559 --> 00:34:43.039
I mean, there I I would have never been able to do this because cognitively I wouldn't have been able to have even a conversation.
00:34:43.119 --> 00:34:44.079
And I still struggle.
00:34:44.159 --> 00:34:48.400
I mean, I'd say I'm about 85%, but 85% is pretty good.
00:34:48.559 --> 00:34:55.760
I still would like to, you know, continue to to to heal, but I I know I'm on the right trajectory.
00:34:56.079 --> 00:35:14.960
Um and then, you know, certainly I know this podcast is healing in ways that, you know, I don't think that I'm that I'm aware of, but honestly, just sharing, yeah, sharing my truth, yep, our truth, is is huge for the soul.
00:35:15.360 --> 00:35:15.599
Yeah.
00:35:15.760 --> 00:35:20.480
And and I do think that, you know, it's almost like I can feel it in a way.
00:35:20.960 --> 00:35:22.320
I can definitely feel it.
00:35:22.559 --> 00:35:34.719
When you think about work in in this line and uh, you know, staying the course of Morgellins and Morgellan's patients and Lyme and and all the things, what gives you hope is you continue this work?
00:35:34.960 --> 00:35:47.920
What keeps you continuing to to advocate for us and continuing to work on improving your protocols on helping Morgellan's patients?
00:35:48.320 --> 00:35:52.639
Yeah, you know, I'd have to say my patients are my greatest motivators.
00:35:52.880 --> 00:35:59.920
Um I I feel like I'm failing them if I'm not pushing forward with researching.
00:36:00.159 --> 00:36:11.280
And so, you know, when I think about, you know, publishing my research or my my project findings, um, I'm doing it for the patients, um, for the Morjellans community.
00:36:11.840 --> 00:36:16.400
Um yeah, I think they're they're my greatest motivators moving forward.
00:36:16.639 --> 00:36:18.800
And just, you know, all my patients.
00:36:19.039 --> 00:36:20.719
Like I feel like they they need me.
00:36:20.960 --> 00:36:23.280
And so Oh, we need you.
00:36:24.079 --> 00:36:25.280
I can vouch.
00:36:26.079 --> 00:36:27.840
I mean, I'm just so grateful.
00:36:28.000 --> 00:36:34.400
I mean, I know that everybody else watching is is gonna feel the same way once they meet you.
00:36:34.559 --> 00:36:36.159
And it it's gonna give them hope.
00:36:36.320 --> 00:36:44.079
They're gonna see that like, you know, there are clinicians that truly do believe in us and want to support us.
00:36:44.239 --> 00:36:48.239
And and um curious about learning.
00:36:48.320 --> 00:36:50.880
Yeah, we're we're still open to learning about it.
00:36:51.119 --> 00:36:52.639
Yeah, thank goodness.
00:36:53.039 --> 00:36:53.679
Thank you.
00:36:54.079 --> 00:36:54.480
Yes.
00:36:54.719 --> 00:36:58.800
Well, I wanted to say thank you so much for being um on the show today.
00:36:58.960 --> 00:37:01.679
I I can't thank you enough for all that you do for us.
00:37:01.840 --> 00:37:07.360
And I look forward to seeing uh your protocol released uh once that happens.
00:37:07.440 --> 00:37:23.039
And I'd love to actually have you on again once that does happen to kind of maybe talk about, you know, I mean, I would love to see it in our healthcare system as a best practice, right?
00:37:23.679 --> 00:37:28.960
The tool used as as a best practice for clinicians out there.
00:37:29.119 --> 00:37:30.559
That would be really nice.
00:37:30.880 --> 00:37:31.280
Great.
00:37:31.360 --> 00:37:34.239
Well, I I look forward to our future conversation then.
00:37:34.559 --> 00:37:34.880
Yeah.
00:37:35.039 --> 00:37:35.360
All right.
00:37:35.440 --> 00:37:38.639
Well, thank you so much for joining us today and have a great day.
00:37:38.880 --> 00:37:39.280
Thank you.
00:37:39.440 --> 00:37:40.880
Thank you for having me, Britt.
00:37:41.440 --> 00:37:41.840
Thank you.
00:37:42.079 --> 00:37:45.199
Thank you so much for tuning in to What the Morgugs podcast.
00:37:45.360 --> 00:37:47.199
I'm beyond grateful that you're here.
00:37:47.280 --> 00:37:50.239
And thank you so much for being a part of the special community.
00:37:50.480 --> 00:37:59.199
To learn more, you can visit us at whatthemorgues.com and you can follow us on Facebook and Instagram at WhatThemorgues Podcast.
00:37:59.360 --> 00:38:01.440
Thank you so much for tuning in.
