Morgellons? I Made the Diagnosis of DP. Now I Have to Figure Out How to Manage it.

Sometimes you learn about a disease just before you run into it for the first time. That has happened again and again in my career.

After I published my post about bot fly infections, a commenter asked if I had seen the larvae and suggested it might have been a case of Morgellons disease. I had never heard of that one, so I read up on it. Morgellons is a subtype of delusional parasitoses (DP), which can have many etiologies.

My own patient’s larvae were well documented by others and I think I saw them during our telemedicine visits.

A few days later I had reason to remember my impromptu research.

Gail is a woman in her forties with anxiety disorder and fibromyalgia. She came in with a concern about parasites under her skin and told me two of her girlfriends and her next door neighbor also had them.

Each one of them had seen several providers including the emergency room and basically had been told they might have scabies but probably didn’t. They had all tried and failed topical permethrin.

But Gail gave me a vivid description of all the teeny-tiny parasites she saw in the bottom of the tub after she bathed off the permethrin the morning after her treatment.

She also described, in excited and dramatic language, how scraping the skin where she saw a little black “thing” would make her suddenly itch or bleed some distance away. She used descriptions like “they get angry” and “they are clever”.

I looked and I looked. I took off my -10 diopter glasses and placed my eyeballs 4 inches from her skin, spotted with blemishes of different age and size. I saw nothing that looked like insects, burrows or bites.

I offered to do some skin scrapings. Gail was pleased. As I did it, I did see her unusually thin skin start bleeding very slightly half an inch away from my sampling here and there and she said, “see, they’re on the move”.

I submitted my sample and as I wait for the path report I am thinking about what to say next.

Here is what I have learned from UpToDate:

Delusional parasitosis can be associated with a host of psychiatric conditions but can also have its root cause in tingling sensations caused by medications, from ciprofloxacin to topiramate, amantadine, ketoconazole and many others. It can be related to diseases that cause paresthesias, from Lyme disease to restless leg syndrome (Ekbom’s disease, which can be linked to iron deficiency) to diabetes and many others.

Regarding Morgellons, which my commenter suggested, UpToDate writes:

Morgellons is a syndrome characterized by symptoms that appear to be identical to delusional infestation or very similar, but with the addition of the affected patient’s beliefs that inanimate objects (such as colored strings or fibers) were present in the lesion as well.

UpToDate and many other sites, including Wikipedia, point out that one (possibly increasing) common cause of delusional parasitosis, or formication, is methadone or cocaine abuse:

Some users also report formication: a feeling of a crawling sensation on the skin also known as “coke bugs“. These symptoms can last for weeks or, in some cases, months.

So now my question is: How do I tactfully explore if the cluster of cases in my community has anything to do with meth or coke when so many other things theoretically could cause these symptoms?

19 Responses to “Morgellons? I Made the Diagnosis of DP. Now I Have to Figure Out How to Manage it.”

  1. 1 Felicity May 17, 2021 at 5:23 am

    Good morning, Doctor,
    It might be wise to speak with this foundation before you venture further.
    The last thing patients need is to not be believed, they can get that attitude from numerous medics but from what I’ve read having followed your blog, I’m sure you have a more open approach and willingness to learn regarding conditions you hadn’t learned about in medical school.

  2. 5 aptroed May 22, 2021 at 10:38 pm

    It’s a psychiatric disease. This does not mean I do not look very carefully, but after ruling out organic disease, it is what you are left with. An exceptional case to bring up the point: a young woman was raped at college. After a thorough sex abuse exam, with no STD’ noted, she returned to her home state. She was convinced she had contacted a disease and or parasites. She went to an OBGYN doctor and two different ID doctors, who did not find anything, but one gave her Doxycycline, just in case. After not getting any relief, she came to my practice. I could not find anything on exam and repeat STD testing. I tried to gently explain to her there was nothing there. Then she asked me for a referral to Mayo, which I gave. She needed Psychiatric help, but dismissed me as being like all the other doctors. I have treated other patients, two, but found it only reinforces their belief and delays them from Psychiatric help.

    • 6 acountrydoctorwrites May 22, 2021 at 11:37 pm

      Where I work, there are 2 (two) psychiatrists within a 200 mile radius…

      • 7 Tony Glaser May 23, 2021 at 11:56 am

        I guess you have to manage it the way you manage this lady’s fibromyalgia and her anxieties in the absence of local specialists (none of whom would likely be very helpful!) – a reasonable workup (which you have done), reassurance, supportive attitude, perhaps medications for symptomatic relief (whether for anxiety, pruritus or whatever). I try to support the patient but not the symptoms – eg. with anxious patients who keep calling with palpitations, after an EKG/Holter and whatever else may be appropriate, I tell them that the definition of palpitations is that there is a sensation of the heart beating abnormally – and once we have ruled out an abnormal heart, what we are left with is an abnormal sensation, which is a much preferable conclusion, even though the sensations may be troubling and anxiety arousing. Do tell us what the Mayo says (which department did you refer her to? Psychiatry, dermatology, ID?).

  3. 8 Mamadoc May 25, 2021 at 1:08 pm

    Have seen this a couple of times and it is VERY difficult.

  4. 9 Christopher Guzik May 31, 2021 at 7:36 am

    In my 20+ years of Family Practice, I too have had three patients with DP. All were women between 50-70 years old, all had anxiety disorder, one was also treated for ADHD, all had degenerative OA. All had a traumatic life event. All had polypharmacy with an opioid, benzodiazepine, and a psychostimulant medications. Could DP be a a form of medication induced psychosis ?

    • 10 acountrydoctorwrites May 31, 2021 at 8:13 am

      Yes, I found a list of several, even ciprofloxacin.

    • 11 monty ladner November 25, 2021 at 4:08 pm

      DP criteria is middle aged Caucasian women who have no history of drug abuse,are isolate,d and no history of mental disorders. so no this assumption is not factual. Quite possibly a fungal infection that has not been properly evaluated because the doctors immediately think this patient is delusional and does not have the know how to run proper tests. Even the KOH test can be done in office with very good results. But in reality giving a patient this diagnosis without differential diagnosis is biased and premature especially without proper tests. This alone will cause mental health problems in a patient who is seeking help for avery real physical disease. Take Behcets for instance,not many in the US,but because it is an old world disease,it is not entirely thought of in these times. But many are misdiagnosed because of this adaptation and thinking.

  5. 12 Jan Clift August 18, 2021 at 1:09 pm

    I have had morgellons for over 8 years. I know now what they are because my neighbor had 2 trees cut down because of beetle infestation. IT is a bug, or rather the Caterpillar before it becomes the bettle. If you don’t open the skin it will be a small bettle. I can send pictures to show you. I have been so sick to the point of losing interest in life. I’m just thankful I know what is driving me crazy. Peace and love. Jan

  6. 13 Penelepe November 21, 2021 at 3:14 am

    And I thought the biggest problem was lack of research. The science has caught up, though. Why are the only people interested in reading and understanding the complex biofilm problem – or reading even a SINGLE peer reviewed article dating back 10+ years – are the poor sufferers who can’t get a single medical professional to do the same. I have had appointments where I literally give away copies of the first book to properly explain the complexities of Morgellons, repleat with an index full of cited peer reviewed research. And I have been laughed at, scoffed at, and literally not one of these professionals has even pretended he or she would read or address the science. The suffering we experience is not psychic, psychogenic or psychological in origin. There are specific symptoms heretofore unheard of, with reasonable and clear origins. And yet rather than follow the thread to understand the data that has been replicated, duplicated, added to and confirmed again and again, medical professionals choose to indulge in wholly UNproven theories. Spirochetes, biofilms, and process by which the former uses human nutrients and cells to become the latter, is far less mysterious than “Delusions of Parasitosis” – a label I find hilarious when attributed to anyone who has PHYSICAL symptoms, yet openly clarifies again and again that she believes NO such infestation of parasites exists!

    Since this illness took hold when I was young, healthy, and newly married, I have often wondered that perhaps a small gift wawsht bestowed as my husbands and my dreams of children dissolved into thin air. I cannot imagine having to summon the hope to raise offspring in a time and place where any vague sense of the ordered world of reason and shared logic I once understood to at least be accessible with great effort and money spent had faded into a mirage.

  7. 14 monty ladner November 25, 2021 at 3:58 pm

    The only reason why patients with morgellons exhibits behavior similar to delusional parasitosis is because it is not accepted or presented as a physical diseases with systemic features and the patient feels it is necessary to take matters into their own hands. Even though there is evidence of systemic involvement including anemia and enteritis, there has not been many studies including systemic involvement and the average MD accepts that this disease is purely delusional. That it does not exist as a physical ailment, except for features of the assumption the patient is presenting to harm oneself or cause this to oneself and this is simply not the case. Any MD who immediately assumes this is delusional. Now,there are factors involved when a patient struggles for help and is not listened to that will cause mental changes. but that is very normal in almost any category of a typical physical ailment that is not being treated and left alone because one does not believe it is an actual problem. Cause and effect. This doctor patient relationship is flawed.

  8. 17 Carol Obrien December 31, 2021 at 12:52 am

    Obviously you have not studied your microscope. Had you been more aware of the research being done regarding Morgellons, I doubt you would have made those absurd arguments.

  9. 18 notesfromthebayofplenty May 25, 2023 at 8:36 pm

    One medication that would help both with anxiety and with the itching would be a low dose of prochlorperazine. I’ve had a few patients with Morgellon’s and a few with delusional parasitosis, and some were so distressed they were unable to sleep and were so preoccupied with the beliefs of infestation. A low dose of risperidone or olanzapine also was helpful.

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Osler said “Listen to your patient, he is telling you the diagnosis”. Duvefelt says “Listen to your patient, he is telling you what kind of doctor he needs you to be”.


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