A closer reading of CEHF’s citations reveals a four-day mouse experiment described as months of joint swelling, an animal study blurred into a human PTLDS diagnosis, and a 6 percent figure whose denominator changes as it moves through the Morgellons literature.
Morgellons studies appear to reach opposite conclusions. The CDC-supported investigation identified ordinary environmental material and no common infectious cause. Filament-focused papers described biological structures associated with skin tissue and reported evidence of Borrelia. Psychiatric literature frequently classifies Morgellons as delusional infestation. These findings may conflict partly because the studies did not consistently examine the same patients, specimens or definition of Morgellons disease.
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.
A patient who still needs treatment has not failed.
I keep seeing “getting off antibiotics” treated as the finish line for chronic Lyme patients. But what if stopping treatment also means losing function, cognition, or quality of life?
I took a closer look at the long-term antibiotic studies, MyLymeData treatment-response data, and the question I think medicine should actually be asking:
What treatment strategy gives this individual the greatest sustained function and quality of life at the lowest acceptable risk?
Curious how people here who have stopped antibiotics would describe what happened afterward: continued improvement, relapse, or something in between?
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:
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!"
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"
What in the hell is this?
I did a deep dive after a feed showed up of this guy claiming that these are man made synthetic parasites that get into your body. He showed all around his room these fibers standing straight up.
Then I looked on Reddit and its thousands of people accounting this.
I google it and it’s a delusion.
But I find on other sites that to say it’s a delusion is inaccurate but its body produced keratin fibers that are expelled from the skin.
I’m seeing people pulling these strands of like spider web looking strings coming out of their body.
I have never in my life heard of something so controversial, strange, polarizing…
What in the hell!?
