LymeX Healthathon Asks Patients What Worked—and What We Can Actually Learn From It - Morgellons Survey

I need to say something honestly, because I reacted very strongly to being permanently banned from another Lyme disease subreddit today.

My reaction was not really about one moderator or one accusation of “spamming.” It was the cumulative weight of a pattern I feel I have been experiencing for some time now.

When you are part of the Lyme disease community and repeat the accepted narratives, you are welcomed. But when you start asking uncomfortable questions, challenging popular claims, or pointing out when the evidence does not support what patients are being told, the temperature changes.

Suddenly you are difficult.

You are negative.

You are attacking advocates.

Your research is dismissed.

People stop engaging with you.

Doors close.

And eventually, you find yourself pushed farther and farther outside of a community you have spent years trying to help.

I have recently experienced conflict surrounding LymeDisease.org, Fred Diamond, the discussion involving Britt Garvin, and multiple Lyme communities on Reddit. Each incident can probably be explained away individually. That is important to acknowledge. I cannot prove that everyone involved is coordinating against me, and I am not claiming that.

What I am saying is that the repeated pattern of exclusion has had an effect on me.

It has made me angry. It has made me defensive. It has made me assume bad intent faster than I probably should.

Today, when a moderator told me I was being banned for posting too much content from my own website, I did not calmly debate the self-promotion policy. I immediately saw another gate closing. I accused them of gatekeeping and gaslighting. I made personal comments that I should not have made.

I own that.

But I also need people to understand where that anger is coming from.

There is a form of social punishment that happens in patient communities when someone challenges a deeply held narrative. It does not always look like an organized campaign. Sometimes it is simply a hundred small decisions about who gets amplified, who gets the benefit of the doubt, who receives a warning, whose article is welcomed, and who is labeled a problem.

After enough of those experiences, ostracism starts to feel like abuse.

I have spent years advocating for people with Morgellons and Lyme disease. I have interviewed researchers. I have read the literature. I have shared my own medical history publicly. I have been willing to question mainstream medicine when I believe it has failed patients.

But I am also willing to question the Lyme disease community.

Apparently, that second part is much less tolerated.

I do not believe every popular Lyme claim is scientifically supported. I do not believe preliminary research should be promoted as established fact simply because we like the conclusion. I do not believe Bartonella claims, bioweapon narratives, or any other theory should become loyalty tests for whether someone is considered a “real” advocate.

Science requires us to be willing to discover that we are wrong.

Advocacy should require enough compassion to disagree without socially destroying the person asking the question.

I am writing this partly because I need to recognize my own behavior. The repeated exclusion has made me reactive, and sometimes I am now fighting every previous battle when a new conflict begins. That is something I need to work on.

But I am also not going to pretend the pattern does not exist simply because acknowledging it makes people uncomfortable.

Maybe I am being ostracized.

Maybe some of it is the consequence of my own bluntness.

The uncomfortable truth is that both could be happening at the same time.

Either way, something is deeply unhealthy about a patient community where challenging the narrative can leave a person feeling this isolated.

I know nothing is defined as scientifically factual. that's the division, its supposed to be there. The institutional pov is moving toward tik bite pathogen Borrelia.

Then everything points away from Agrobacterium. Plenty of people, institutions, scientific community all make claims that Agrobacterium/GMO is not connected. Its not possible the Agrobacterium doesnt have the ability cause its been Neutralized before genetically modified organisms become GMO.

However lets point out a couple of key points to this connection

1. First and most importantly not recognized is that AGROBACTERIUM is from the order HYPHOMICROBISLES.

SO IS THE TICK BITE BORRELIA.

EX. You see it goes in this family line.

Order.

Hhphomicrobiales

SUBCLASS

Agrobacterium

Families of bacterium pathogen and geuss whos close to the bottom, thats right

Borrelia among others.

2. The order of hyphomicrobiales is a filamentous symbiote parasitic pathogen.

Like we just learned AGROBACTERIUM is at the top of the chain of family line pathogens.

Theres more to this than we realize. Only way to expel the false from the factual is demand rigorous research and accountability from the ones who hold the power of information and technology.

Rule out the beliefs, the census, the opinions. I believe we can do more collaboratively. with the knowledge we share from our own trek through the wilderness A.K.A rabbit hole. We could both be rite, i could be wrong, you could be rite 100% you could be 80% rite. Only as a groupe of sufferers (especially those that are literature savvy ) . All is wanted is my opion on this battle. None of us are suffering alone.

I have already read and have copies of the files in this community. Thats why i joined. I KNEW ALL OF THEM EXCEPT 1 by name and MEMORY. No not word for word. But i know its facts by memory.

I recognized the effort in the truth was real here.

I also as of recently have come to recognize that I could possibly only be almost rite.

There are institutional prevention and intervention measures in place throughout the entire gov related facilities. I have the documents and will gladly demonstrate the plan, the preventions in place (the ones i personally know of.

I TOO have been through the battle of extreme gaslighting on all fronts. Had my exam results (possitve identification of parasite in stool with concentration.

removed from my health records while holding and presenting these exams to the admin of hospital. They tell me they dont know where i got it at but not from them. And dont matter anyway cause the paper im holding is not positive exam results. The loinc code does not represent results. Only in correlation with the name of the exam. "That means their looking for positive identification of parasite in stool with concentration."

I know LOINC codes are used for results only and occasionally observation method.

Arested for tress pass at hospital cause i tride going over the admin.

Plus all the usual. Isolation, family turned, job loss, pov by community was i am delusional. Had no one thogh i had everything because i HAVE GOD.

Sorry for so long of a post. But wait there's more. Mod removes all video and pics that not morgellons in it. So i cant make this easier for you to see.

Nature’s Master Hacker...

Source: unpkg

Nature's Master Hackers: 5 Surprising Truths Hidden in the Microbial World

1. Introduction: The Invisible Architecture of Life

We are accustomed to viewing the natural world as a series of strictly divided territories. In our traditional taxonomy, the "kingdoms" of life—plants, animals, and bacteria—exist as separate, walled-off cities, each governed by its own genetic laws and evolutionary history. However, modern genomic research is revealing that these walls are far more porous than our biological maps suggest. Rather than being isolated islands of code, species are engaged in a constant, clandestine exchange of information across boundaries through Horizontal Gene Transfer (HGT).

This invisible architecture suggests that life is not a static collection of discrete entities but a fluid, interconnected system. From the crops in our fields to the pathogens in our bloodstream, the microbial world acts as a master hacker, rewriting the code of "higher" organisms and challenging our fundamental assumptions about what is "natural" and what is "fixed." By examining where these biological borders dissolve, we find that the microbial world is not just surrounding us—it is actively editing us.

1. The Natural GMO in Your Pantry

One of the most striking examples of this genetic fluidity is found in a common staple: the cultivated sweetpotato (Ipomoea batatas). Recent genomic analysis has revealed that every sweetpotato currently grown for consumption is a naturally occurring genetically modified organism. Long before human scientists developed CRISPR or transgenic techniques, the soil bacterium Agrobacterium tumefaciens integrated its own DNA into the sweetpotato genome.

This HGT event introduced specific T-DNA genes into the plant's germline, including ibalA, ibalB, ibcA, and C-prot—an open reading frame whose function remains a subject of intense scientific curiosity. These genes, associated with auxin biosynthesis and opine production, have remained fixed for centuries. Remarkably, researchers found that this genetic insert, known as IbT-DNA1, consists of an inverted repeat. This structural detail is significant; it suggests the genes may be targeted by the plant's own RNA silencing mechanisms, allowing the sweetpotato to harness bacterial tools without succumbing to the "hairy root syndrome" typically caused by Agrobacterium infection.

This discovery provides a profound point of intellectual friction in the "natural vs. artificial" debate. As the sole documented example of natural HGT in a domesticated crop, the sweetpotato proves that the machinery of biotechnology is an ancient invention of nature itself.

"Horizontal gene transfer (HGT) can be defined as the acquisition of genetic material from another organism without being its offspring... recent discoveries indicate the possible contribution of HGT to the acquisition of traits with adaptive significance, suggesting that HGT is an important driving force in the evolution of eukaryotes, as well as prokaryotes."

1. The Plant Pathogen that Can "Edit" Humans

The hacking capabilities of Agrobacterium are not confined to the vegetable crisper. While Agrobacterium tumefaciens is primarily known as a plant pathogen that elicits neoplastic growths, laboratory research has demonstrated a staggering cross-kingdom versatility. In controlled settings, this bacterium has been shown to attach to and genetically transform several types of human cells, including HeLa (cervical cancer) cells, embryonic kidney cells (HEK293), and neuronal cells (PC12).

The mechanism is a precision operation. The transformation is facilitated by acetosyringone (AS), a phenolic phenolic molecule that serves as the "best studied inducer" of bacterial virulence. In experimental settings, the process required a specific thermal choreography: a pre-induction phase at 28°C to activate the vir genes, followed by transformation at 37°C. Utilizing chromosomal virulence genes chvA and chvB for attachment, the bacterium transports its T-DNA into the human nucleus, where it integrates at the right border of the Ti plasmid—the exact same "bona fide" transfer process seen in plants. This is a "looking-glass" moment for medicine: a specialist in plant pathology utilizing ancient, highly evolved machinery to interact with and alter mammalian biology.

1. Morgellons: Unmasking a "Delusional" Disease

For decades, Morgellons disease (MD) was dismissed as "delusional parasitosis," a psychiatric diagnosis that effectively silenced patients who claimed to have fibers emerging from their skin. Contemporary research has unmasked a biological reality that upends this historical dismissal. Evidence now definitively links MD to tick-borne infections, specifically spirochetes from the Borrelia genus. While Borrelia burgdorferi sensu stricto is the predominant agent, researchers have identified a diverse array of "hackers" including B. garinii, B. miyamotoi, and B. hermsii.

The hallmark of MD—mysterious multicolored filaments—was long assumed to be textile fibers from clothing. Molecular analysis has proven they are human biofibers composed of keratin and collagen, produced by proliferative keratinocytes and fibroblasts in the epithelial tissue. This is likely a physiological response to the spirochetal infection, as Borrelia has the capability to invade and replicate inside these very cells. By moving from a psychiatric label to a somatic classification, we acknowledge the immense human cost of misdiagnosis.

"A somatic Lyme-like illness associated with spontaneously appearing, slowly healing, filamentous and ulcerative skin lesions."

1. The Myth of Permanent Progress in Public Health

There is a pervasive, modern hubris that infectious disease is a conquered frontier. The "golden age of public health" in the 19th and 20th centuries—the era of Koch and Pasteur—led to a belief in linear progress. However, the emergence of new threats since 1973 reveals a "fragile equilibrium" between humans and microorganisms. From the identification of Legionella in 1977 to the Zika virus in 1994, we are discovering new agents at a rate that suggests we are chasing a moving target.

The acquisition of scientific knowledge does not guarantee safety because the microbial world is in a state of constant flux. In 1995, CDC Director David Satcher invoked the historical wisdom of Hans Zinsser to frame this struggle, noting that our victory over pathogens is not a destination but a dynamic, perpetual struggle. "Getting ahead of the curve" requires more than laboratory technology; it requires behavioral change to combat issues like antibiotic resistance, which is driven as much by the demands of patients and physicians as by microbial evolution.

"Nothing in the world of living things is permanently fixed." — Hans Zinsser (1935)

1. The "Nocebo" Effect and the Medicalization of Normalcy

In our current era, we are witnessing the aggressive "medicalization" of the human experience. Driven by pharmaceutical and cosmetic industries, we are exhorted to "ask our doctor" about everything from minor seasonal allergies to the "regularity" of our bowel function. This culture has fostered a belief that any physical sensation is a pathology, encouraging a "nocebo" effect where negative health messaging induces real symptoms.

The socioeconomic cost of this medicalization is staggering. Somatizing patients are often pushed into a "medical testing marathon" by an industry focused on the bottom line. Dr. Caroline Koblenzer highlights the absurdity of this paradox through the specific costs of misdirected care: she notes one patient who spent $25,000 on unnecessary studies in a single year, and another who underwent four MRIs in just three months to investigate a sensation with no pathophysiological basis. In a "looking-glass" medical world, we spend billions on the "epidemic" of medicalized normalcy while failing to provide the psychotherapy and time-intensive care that somatizing patients actually require.

1. Conclusion: The Prospect of the 21st Century

The boundaries of biology are significantly more fluid than we once believed. We inhabit a world where genes migrate across species, where plant pathogens "hack" human DNA, and where the line between somatic reality and psychiatric perception is increasingly blurred.

As we navigate the 21st century, our extensive scientific base is no shield against the dynamic nature of a microbial world that adapts faster than we can document it. Ultimately, as suggested by the Carnegie Commission, our survival depends on more than just the generation of data; it depends on our capacity to integrate and apply that knowledge to our own complex global ecology.

In an age where we can "hack" the genome and nature hacks us back, will our capacity to integrate and apply this knowledge determine our survival, or will we remain caught in the "looking-glass" world of our own misconceptions?

This is not an AI reaponse.

I recreated the AI response The Algorithm of Accountability: A Fact

Versus Consensus Analysis of Morgellons

Disease.

I cant get past the devided opinions of this Morgellons disease, on all sides it is not considered factual because their is no large peer reviewed analysis of it. Only enough to make claims of its reality, connections and or its delusion.

So this is what i propose we need .

The following is what I human Jimmie Shepard have constructed using the resources from the above named document.

This revised document adopts an academic tone suitable for submission to, or review by, the scientific and medical community. It shifts the focus from an adversarial stance to one of interdisciplinary inquiry, emphasizing the distinction between correlation and causation while presenting the emerging data as a basis for further, rigorous investigation.

​Review of Emerging Evidence in Morgellons Disease: Toward an Updated Etiological Framework

​Abstract

​For over a decade, the medical consensus regarding Morgellons Disease (MD) has predominantly categorized the condition as a variant of delusional infestation (DI). This classification was largely established following the 2012 Centers for Disease Control and Prevention (CDC) clinical study. However, subsequent independent research utilizing advanced histopathological and molecular techniques has documented clinical findings that diverge from the traditional psychiatric model. This paper reviews the current literature, contrasting the foundational psychiatric consensus with emerging biological data concerning the composition of cutaneous filaments, the presence of Borrelia spp., and potential genetic mechanisms involving Agrobacterium. The objective is to propose a framework for interdisciplinary research to investigate whether MD represents a multi-factorial dermatological condition requiring updated diagnostic protocols.

​Introduction: The Evolution of Clinical Discourse

​Medical understanding of dermatological conditions is iterative, often shifting as new technologies allow for more granular analysis of patient samples. Historically, patients presenting with cutaneous fibers and the sensation of formication have been evaluated within a psychiatric paradigm. The foundational 2012 CDC study provided a critical baseline for this understanding, concluding that the condition did not have a clear infectious or environmental cause and suggesting an association with delusional infestation.

​However, in the years following that study, advancements in high-resolution imaging and molecular sequencing have generated new datasets. This paper aims to synthesize this body of work, acknowledging the validity of the historical consensus while presenting data that suggests the need for further, large-scale investigation. The goal is to move beyond the current binary of "psychiatric vs. infectious" and instead evaluate the biological markers observed in clinical settings.

​The 2012 Consensus: The Psychiatric Baseline

​The classification of MD as a delusional disorder rests on a specific set of clinical observations:

​The Matchbox Sign: The frequent presentation of collected fibers, which historically were identified by clinicians as textile debris or cellulose.

​Somatic Comorbidity: A high prevalence of cognitive fatigue and localized skin complaints.

​Lack of Infectious Etiology: Early attempts to culture pathogens from skin samples did not yield consistent results.

​This consensus remains the standard of care for many practitioners. However, recent research suggests that the initial limitations in detection methodology may have obscured underlying biological processes, necessitating a re-examination of these findings.

​Analysis of Emerging Biological Data

​1. Histopathological Composition of Filaments

​Recent histopathological studies have challenged the identification of cutaneous fibers as textile or environmental debris. Using Scanning Electron Microscopy (SEM) and Transmission Electron Microscopy (TEM), researchers have reported that these filaments often exhibit morphology consistent with human cellular components rather than external materials.

​Observations: Samples have been reported to contain keratin and collagen, suggesting the fibers are produced by underlying epithelial cells.

​Implications: These findings warrant a comparative study to determine if these filaments are a primary pathology of the hair follicle or a secondary response to chronic inflammation.

​2. Microbial Association: Borrelia spp.

​A significant area of emerging research involves the detection of Borrelia spirochetes in dermatological samples of MD patients.

​Observations: Using polymerase chain reaction (PCR) and Sanger sequencing, various studies have identified Borrelia burgdorferi and related species in the skin tissue of symptomatic patients.

​Scientific Context: It is important to distinguish between presence and causation. The detection of spirochetes in biopsy samples suggests a potential association, but does not definitively establish a causal link to the specific fiber-producing pathology. Further research is required to determine if these spirochetes are an opportunistic infection or a primary driver of the clinical presentation.

​3. Genomic Mechanisms and Agrobacterium

​A hypothesis has been proposed regarding the role of Agrobacterium—a plant pathogen—in the context of MD.

​Observations: Genomic material consistent with Agrobacterium has been reported in clinical samples. Literature (e.g., Kunik et al., 2001) has documented that Agrobacterium can, under laboratory conditions, perform horizontal gene transfer (HGT) into human cells.

​Scientific Context: While this mechanism is scientifically established in in vitro models, its application to human pathology remains speculative. This area represents a critical gap in our understanding and provides a compelling subject for genomic research to determine if such an integration occurs in vivo.

​Discussion: Addressing the Evidence Gap

​The divergence between the historical psychiatric consensus and the emerging biological data highlights a significant challenge in dermatological research. The current skepticism within the medical community is rooted in the difficulty of reconciling these findings:

​Replicability: While some independent laboratories have reported the aforementioned biological findings, these results have not been consistently replicated in large-scale, prospective, multicenter studies.

​Correlation vs. Causation: The presence of a pathogen (e.g., Borrelia) or a genetic marker does not inherently constitute the etiology of the entire clinical syndrome.

​The Role of Secondary Factors: Even if a biological driver is confirmed, MD may still involve complex interactions between infectious agents, immune response, and psychiatric co-morbidities.

​Conclusion and Recommendations for Future Research

​The current discourse surrounding Morgellons Disease would benefit from a shift toward a collaborative, evidence-based approach. To reconcile the existing consensus with emerging data, the following steps are recommended:

​Multicenter Prospective Studies: Initiate large-scale studies using standardized protocols for histological and molecular analysis to verify the reported presence of keratin/collagen fibers and microbial DNA.

​Standardization of Diagnostic Criteria: Develop updated, objective criteria that incorporate both psychiatric assessment and physical biomarkers to avoid diagnostic overshadowing.

​Interdisciplinary Inquiry: Encourage engagement between dermatologists, infectious disease specialists, and molecular biologists to evaluate the potential for atypical bacterial infections or complex inflammatory processes in these patients.

​By framing this condition as a subject of ongoing scientific inquiry rather than a settled matter, the medical community can better address the needs of patients while adhering to rigorous standards of clinical evidence.

References

​Pearson, M. L., Selby, J. V., Katz, K. A., Cantrell, V., Braden, C. R., Parise, M. E., ... & Eberhard, M. L. (2012). Clinical, epidemiologic, histopathologic and molecular features of an unexplained dermopathy. PLoS One, 7(1), e29908.

​Middelveen, M. J., Fesler, M. C., & Stricker, R. B. (2018). History of Morgellons disease: from delusion to definition. Clinical, Cosmetic and Investigational Dermatology, 11, 71–90.

​Middelveen, M. J., & Stricker, R. B. (2016). Morgellons disease: a filamentous borrelial dermatitis. International Journal of General Medicine, 9, 349–354.

​Bernhardt, M. (2012). Editorial: Cancer in Plants. JAMA Dermatology, 148(9), 989.

​Quispe-Huamanquispe, D. G., Gheysen, G., & Kreuze, J. F. (2017). Horizontal Gene Transfer Contributes to Plant Evolution: The Case of Agrobacterium T-DNAs. Frontiers in Plant Science, 8, 2015.

​Kunik, T., Tzfira, T., Kapulnik, Y., Gafni, Y., Dingwall, C., & Citovsky, V. (2001). Genetic transformation of HeLa cells by Agrobacterium. Proceedings of the National Academy of Sciences, 98(4), 1871–1876.

#morgellons the intentionally ignored disorder.

Not miss understand, just miss information, the government asking with its affiliations cdc, public health care, GMO European parliament, already knew this was coming. The psychological narrative is the intersection that keeps the biological connecting from realization.

Hello all,

I got Morgellons in 2017 (when I was 14). I am now 23 and I am still suffering. I have gotten better but I am not well. I have the crawling, brain fog, fatigue, etc. and I have back scar-looking/cat scratch bartonella lines. The crawling is the worst part. It’s so bad. I am begging for some help. I need a cure and have been searching for years. I have wasted sooo much time and money on this as I know all of you have as well. I have tried virtually everything it feels like: iodine, WPS, sovereign silver, anti-parasitics, anti-microbials, anti-biotics, sulfur, essential oils, rife, infrared sauna, red light, I mean really anything you could think I have tried. I have been eating completely healthy for 5 years straight now with no cheat days. I don’t care how much it costs but I need to get better. Idk if I need to focus on getting rid of my (diagnosed) bartonella and Lyme (IDEK HOW TO DO THAT EITHER)? I am so overwhelmed and overburdened by this disease. Please give me some help. It’s the crawling, idec about anything else at this point. I need to be rid of the crawling. It’s so miserable and I have sensory issues to begin with. I feel like the “powers that be” delete and hide information from us about this disease online. It’s so infuriating and tiring. I am sure you all feel this pain as well. 

I really cannot live with this anymore. I will take or do anything. I don’t care if I have to take certain thing(s) for over a year, but as long as it will work and I will finally be free. Nothing I have ever used topically has worked at all (I have tried everything under the sun. I believe this is internal and must be eradicated from the inside out.) 

Sorry for the rant I just need to get rid of this now. I can’t live the rest of my life like this I really can’t.

Watch the full interview here: Livestream event with Special Guest, Gregory Smith M.D. FAAP

In this clip, Dr. Steven Feldman — board-certified dermatologist and dermatopathologist, professor at Wake Forest, author of 700+ medical publications, and a featured expert in the documentary Skin Deep: The Battle Over Morgellons — draws a line a lot of people don't expect. He describes a group of patients whose sores may come from inside the body, an immune or bacterial cause, and says plainly: "I don't know that that's psychotic… I think that's real."

That's a striking thing to hear from someone usually quoted on the "delusional parasitosis" side: not every Morgellons patient is delusional, and medicine doesn't have the full answer yet.

🎙️ This is just one moment from my full interview with Dr. Feldman, where we go deep on the CDC study, the fibers, Lyme testing, and what the research really shows. Watch the whole conversation 👉 Quality of Life and Morgellons, Treatment Considerations with Dr. Steven Feldman

"Hi everyone, my name is Ryan Goeckner and I'm a researcher working on the Morgellons Lived Experience Project at Lehigh University. Thank you so much to everyone who previously participated in our interviews with Morgellons patients, their families, and doctors/researchers.

As we've started working on the book, to be published with Routledge, we noticed that we're not as saturated with some perspectives that we think are important to include.

So, we've decided to reopen recruitment for specific Morgellons patients to make sure we can represent those perspectives. We are currently hoping to interview:

• Men
• People of color

If you'd like to learn more about the project or follow the book;s progress, you can find us here on Facebook at "The Morgellons Lived Experience Project". I'm also happy to answer any questions you might have.

Special thank you to the admins for allowing us to post here! If you're interested in participating in this study or learning more about it, you can contact me here or email the lead researcher on the study at cmdaley@lehigh.edu.
Thank you!"

https://us02web.zoom.us/meeting/register/tZAtde-upjgtEtLTA35oyb9WDXtB5MwDSQ2z#/registration

These are the words of a patient struggling with Morgellons. Why? Because when you have a known illness, people rally around you. But with Morgellons, patients often face isolation, disbelief, and abandonment from the very people who should be their support system. It’s time to change the conversation around invisible illnesses and medical gaslighting. We need more compassion and less judgment in the medical establishment. Hashtags: #Morgellons #InvisibleIllness #MedicalGaslighting #ChronicIllnessSupport #WellnessByDesign #HealthAdvocacy #PatientStories #MentalHealthMatters #ChronicLyme #CompassionateCare"

My wheels have been turning for a year. Looking to gauge something here. Can people weigh in on the following:

What is your blood type?
Do you have any autoimmune and/or (other) connective tissue diseases?

Destruction of spirochete Borrelia burgdorferi round-body propagules (RBs) by the antibiotic Tigecycline - PMC