Skin Deep: The Battle Over Morgellons

I am familiar with the work of the OSU's Morgellons foundation - it is impressive, especially in light of the hurdles thrown onto their pathway and relatively small level of funding. The foundation's dedication has been a game-changer, confirming a clear direct relation of Morgellons to Lyme (97+% of Morgellons patients also having Lyme Disease is a compelling discovery in itself).

It took 7 years for me to find out I had Lyme Disease after years of a growing number of symptoms very similar to those in the film. No doctor ever mentioned Lyme as a possibility, and the little I could find on Morgellons included conspiracy theories and otherwise far-fetched theories. Looking back from the perspective of what I know now, I had almost every one of the dozens of classic Lyme / Morgellons symptoms, and a family member who had contracted Lyme four years prior in our backyard frequented by deer. But this was before the OSU research, and the idea of having something considered a delusional psychotic disorder by the medical community didn't resonate with me - I wanted no part of that.

Fast forward two years and skin eruptions increased and the first reports of the Lyme connection started filtering out in research. So after reading the then latest information on Lyme/Morgellons, contacting the Morgellons Foundation to gather more intel, one bad experience with a nationally recognized medical facility (that dismissed my dermatologist's 18 months of diagnostics and treatment for Demodex as "it's not necessary to see that - we know what you have"), and in discussions with my long time doctor, we decided to pursue the best available diagnostic testing for Lyme and some of its co-infections as more of a "let's at least confirm you don't have it and eliminate it" step.

Results were positive for Lyme, Babesia, and Bartonella (all tick-born infections). My doc said get to an infectious disease doctor.

Long story abridged, I found a qualified specialist to interpret the test results properly, and after a lengthy and comprehensive discovery of medical history, related symptoms, and environmental background information, it was an immediate confirmation of Lyme and other co-infections plus Morgellons - Then further testing, a comprehensive diagnosis made, and effective treatment initiated.

By that time (after this film was released), results of OSU Morgellons Foundation's research was out (contradicting the Kaiser-P/CDC study). Meticulous care utilizing proper universally accepted research standards was ensured (unlike the Kaiser-P study), including a 10 fold increase in patients utilized. Simultaneously, 3 other similar studies (two international) were being completed albeit not with as large a study pool, but ALL achieving highest standards of execution (while the Kaiser-P study failed to meet standard protocols and should have been dismissed as invalid - Key people resigned in protest, which was not explained in this film, likely to avoid legal repercussions).

Here is my "take" on why Physicians have been so unreceptive to Morgellons being accepted as a biological infection, not delusional:

Delusions of Parasitosis (DOP) diagnoses are taught in Medical School - Residents indoctrinated to quickly identify it and get rid of the patient as the protocol (or prescribing Psych drugs and then shuttling patients out) - the assumption was the person is on drugs and/or just crazy - the MD playbook offers no other option, and the playbook is "gospel".

Physicians holding onto the delusional diagnosis are:

Out of touch with information published over the past few years; Not actively looking for any other answer (other than DOP) and miss the new research data that ties Morgellons to Lyme; Not finding those latest studies even if they are looking, but finding decades of delusional diagnosis articles and citations that outnumber new research 100 to 1 - DOP citations smother the small size of new studies as old citations continue to be used and therefore refresh in date searches; Are simply not going to look, don't have time, and/or just don't want any part of having to forensically search for solutions when such a simple oft used diagnosis is at their disposal - it's understandable; Or, a Physician like Dr. Feldman has already made his mind up, and/or staunchly standing by their own published works and/or years of clinical treatment supporting the DOP diagnosis. It would be an "issue" for Feldman if DOP was determined to be Lyme.

One is unlikely to find a physician who actually went through the steps required to classify a patient as delusional before doing so - Commonly, it is the default diagnosis as soon as the physician PA or ER Resident hears the symptoms or patients use the term "Morgellons." Drug use or existing psychosis is often then presumed. All of which scares patients away from seeking medical help, confuses patients, and its demeaning nature demoralizing to patients who are already feeling bad about their illness and how others perceive them.

I have never heard of or read a citation in which a physician actually goes through even half the steps required to mark a patient delusional. It is concerning on two levels - malpractice, and sufferers remain untreated for the real underlying illness which only worsens over time.

Meanwhile, the CDC continues to flag Lyme as a rapidly growing infection concern, citing rising new infection estimates every two years for Lyme (now over 400,000 new Lyme infections per year estimated in the USA alone, 10 times higher than just 10 years previously cited). CDC further states that only 10% of the cases are ever diagnosed, identifying an urgent need for updated, more accurate diagnostics/testing. The irony is the CDC is admitting the standards they set 30 years ago are outdated and not sufficient to the task, yet such is ignored by MDs. Researchers responded immediately in 2018-2019 helping to set up diagnostics testing grants ($), however most of that activity is on hold due to COVID demands/constraints, and draining research $s.

In researching citations, I have never found an example of a long term successful delusional treatment for Morgellons related cases. Only a few citations that reference things like a 90 day followup of treatment failure "likely" due to "patient not adhering to anti-psychotic drug treatment protocols, and it is the opinion that this would have been resolved if the patient had followed through". Neat and tidy enough to whisk the issue under the rug for someone else to handle.

Fortunately, I found proper skilled specialty medical care, but most others are not so fortunate.

Based on my research, there are thousands of people (perhaps 10s of thousands based on infection rates and medical forums) suffering from this. The small number of people at the national meetings filmed in this movie is NOT indicative of the scale of Lyme/Morgellons infections out there. It is significantly larger.

Early on my dermatologist did simple skin scrapings, finding a significant Demodex infection, and started treatment, but 18 months later admitted "we've thrown a lot of strong meds at this, but the underlying problem is still not identified or resolved - you need an infectious disease doctor to take over."

At least she treated it as a biological ailment and did not dismiss me. My IM doctor also wanted me to see an Infect Disease MD. Neither ever brought up delusions, but they have known me for years as a patient. Someone walking into an ER or random Dermatology group will not have such a luxury of objectivity.

This Dr Feldman character in the film seems fixated on how smart he thinks he is, and his bedside strategy/approach. But the impression he makes is one of an insecure local rube doctor of little consequence who sees himself as the brightest guy in the room. He is in reality a "character" (A joke) - proudly condescending, and definitely NOT-so-bright. I am sure he told his fellow dermatologists that he is even more convinced it is a delusion upon his arrival back home. This is an example of what most patients have to deal with, and the distraught angry sufferer in the film who later took her own life, nailed it when she said to him, "you're just a D _ _ _" (male body part).

If I was in Feldman's office and he put on his "routine" as he proudly references, I'd politely excuse myself and simply walk out thinking "what a waste of time - what an idiot!

The cringe moments in the film when he is on camera are embarrassing. Feldman no doubt went back to Winston Salem with tales of psycho's - Not a problem because his peers probably ignore him at large.

Perhaps this film will shed light on Lyme Disease and it's co-infections and symptoms which includes Morgellons. With almost a half million people in the USA infected by Lyme each year, we need to get on this.

It is careless to continue to brush Lyme and Morgellons into the wast pan as just a delusion. There are a LOT of people desperate for answers, treatment, and a cure. A small universe of dedicated professionals simply started looking deeper into it, and found it was Lyme (an already hotly debated disease). I don't like saying this, but I hope the staunch delusional supporters like Dr. Feldman who dismiss patients by jumping to conclusions of these people being delusional, get bitten by a deer tick carrying Lyme. Guaranteed, they will see things a lot differently and things will change. But a better way is for professionals to just start looking for answers that do not include the easy-out of delusion, and exhaust every clinical medical avenue and possibility including Lyme.

Great to see this film come to fruition. Awareness a huge factor in furthering the successful search for and finding a cure. I recommend to all who are experiencing Lyme and Morgellons symptoms, to seek out a Lyme specialist who also treats Morgellons, and get going on the road to a cure.

Why would a man spend the bit of money he had saved on a project not for profit but to help others...why would a man work a full time job and still pull off the funding production promotion necessary for an "overtime" film project??....why would a man seek a gentle way to try to teach and unite both sides of a very critical controversy...You are a movement....you have a philosophy that must be adopted by all.....you transcend your negative ego with such grace you are the example "You are the perfect Teacher" Thank you for your sacrifice and tenacity in this mission! So many needed someone like you to lend your grace and alleviate so much unnecessary suffering! There is no way to Thank you enough! May you always be blessed and may all you do to teach truth and compassion come back to you infinitely! 🙏🏻

Skin Deep: The Battle Over Morgellons shares powerful patient stories of those with a very real, physical condition that the majority of medicine considers to be psychosomatic; leaving patients that struggle with it few options for improving the quality of their lives. Skin Deep is a turning point for those with Morgellons as it enlightens us all about the condition known as Morgellons.

Very eye opening documentary about a little known disease. It's heartbreaking to see what these patients have had to endure. I hope this serves as a turning point to get these patients proper treatment.

This film follows the lives of various Morgellons patients, and demonstrates how the condition has garnered a second look by independent researchers. Through this film you will feel the elation, desperation, fear and devastation Morgellons patients routinely endure. Above all this documentary is a Good Story. The characters are relatable and the scenarios are interesting. The sound design is Superb! I can highly recommend seeing Skin Deep for an entertaining, and informative, evening.