DI Webinar Q&A

The following questions were submitted during the webinar in the chat box and via e-mail to stoppests@cornell.edu.

Questions for Dr. Lepping

Can you elaborate on Morgellons?

Morgellons is a sub-set of delusional infestation. Sufferers reporting fibers coming out of their skin characterize it. The diagnosis and treatment as a delusional infestation still apply. In essence Morgellons is a change of the delusional content from living to non-living pathogens. The origins go back to less than a handful of people in the U.S. Publications have so far not provided any credible evidence for its existence.

To reiterate the treatment options:
We recommend amisulpride (or sulpiride), olanzapine, risperidone or haloperidol. Co-morbid depression, dementia, substance misuse, infection, etc. need treatment in their own right in addition to neuroleptics (antipsychotics). Secondary dermatological problems are common.

Do you find sufferers may also exhibit some obsessive compulsive disorders, like excessive hand washing, cleanliness and orderliness? (Related: Is there anything in common between this condition and other self-harm conditions such as young people to cut themselves or eating disorders?)

No, there isn’t. We have no evidence that any personality is more likely to develop DI. Risk factors are older age and sensory impairment as well as illnesses that cause itching. OCD is not related to self harm, the latter is most commonly linked to Borderline Personality Disorder, which is not at all linked to DI. OCD is characterized by intrusive thoughts to fix/clean; these thoughts are identified as senseless, they are resisted, but resistance causes anxiety. In DI (psychotic illness) the thought is not seen as senseless and it is not resisted.

How long do patients need to be on therapy?

We recommend at least 1 year to avoid relapses.

What is the prevalence of this condition? (Related: What is the prevalence of this problem in the U.S. as compared with other nations?)

Prevalence figures are difficult to get to. Our best estimates suggest about 1 in 10,000 new cases a year. There is not enough data to make comparisons between countries. The available data is European. In the U.S. estimates range from 3 to 8 cases per 10,000 people; since the condition may persist for decades, that encompasses Dr. Lepping’s 1 in 10,000 new cases each year. (Estimates are that in the U.S. between 100,000 and a quarter million people may suffer from Ekbom Syndrome at any given time.)

What is the role of a psychologist or counselor in working with people with DI? Are there any books or articles regarding psychological counseling for people with DI?

There is not data at all. In theory, therapy based on the treatment of psychosis may be useful, but this patient group is notoriously difficult to engage. To work with a psychologist they’d have to accept in some way that the cause of their symptoms is psychiatric, which they won’t do.

Dr. Lepping referred to “CFC” sponsoring a $3m study. Did he mean CDC, the Centers for Disease Control?

Yes, we apologize for the error. The U.S. Centers for Disease Control sponsored the study.

Are medical professionals educated in DI / DP to the extent they ought to be so that they will not send their patients who complain of bizarre biting/flesh-burrowing pests to pest management professionals instead of to an experienced psychiatrist who can prescribe the appropriate antipsychotic medication to alleviate the delusional symptoms?

Not all dermatologists or general practitioners are familiar with this delusion and its treatment. If you refer a client to a doctor, ask who the client sees and offer to provide the results of your pest inspection/monitoring/identification to the medical professional. Contact the medical professional and voice your concerns. Refer the doctor to the recording of this presentation for recommendations. Hopefully this will prevent the doctor from sending the sufferer back to a pest management professional or extension specialist. We need to discourage doctors to simply advise a psychiatric assessment as patients won’t go to that. There are various publications with advice for dermatologists and GPs for that matter.

Questions for Dr. Hinkle

We are seeing more doctors refer their patients to us in Extension. How would you suggest handling this?

Get the doctor’s contact information, call them, and have them watch this presentation, specifically Dr. Lepping’s recommendations about prescribing neuroleptics for anxiety.

Send the patients to Dr. Hinkle: insects@uga.edu or (706) 542-9033.

We have to be careful not to overstep bounds in what advice we give. How can we nudge people toward seeing a doctor when they are so convinced they have an insect or mite problem?

Do the diagnostics that you are qualified to do and then inform the person that you have ruled out insects to the best of your abilities. Let them know that you are not able to perform inspections on their body and they will need to go to a medical doctor for an examination. Request that any further samples they wish to provide come to you from a doctor’s office.

Where tests indicated that there were some biological element present in 78% of the cases and where you say that they were not known to be parasites, what was they breakdown and how do you know for sure that some of the items found aren’t the cause of an allergic reaction or a vector for an irritant? There is considerable evidence at collembola.org of collembola infestation. Entomologist Peter Hurd had several generations living in his sinuses. A recent Italian vet study indicated that they were infesting a cat. Dagupta showed they fed on newts and had newt blood in their stomachs. How do you account for these peer reviewed studies?

The diagnosis of DI is not made on evidence of random findings in randomly selected patients. There is no evidence that patients with DI have a true infestation nor has such been independently replicated and proven in a bigger sample. Any of the findings in the publications mentioned are small samples, never replicated, and constitute mere associations without any proof that they caused the symptoms or were even clinically relevant. All bigger studies ever conducted showed none of these associations, and anyway associations in random cases never prove causality. What’s more, delusions are diagnosed taking into account the implausibility of the sufferer’s explanations, which I explained in the webinar.

How about allergies that cause the itching?

The first step when dealing with anyone’s ailment is to inspect and try to identify the problem. This should include thorough investigation for insects by a pest management professional and a thorough examination from a medical doctor. Look for sources of the sufferer’s symptoms, including allergies.

What recommendations do you make for patients whose DI starts with a real skin infestation such as scabies?

Treat the infestation and the delusion as separate problems. The treatments will be completely different.

Is it helpful to photograph the client and show them the objects and particles from their skin tape samples to convince them that they were mistaken and to rule out entomological causes?

If the person is delusional, this will not help. You could do this and listen for their reaction. If the picture appeases them, then they may not be delusional. If their reasoning persists and they use the rationale Dr. Lepping discussed on the webinar, then they may be delusional.

Has anyone written an extension publication that deals with this issue without actually naming it or offending the sufferer? It would be great to have something that explains the issue of sensations of biting in the context of a medical condition that includes the facts presented by both speakers: there are no biting pests you can’t see, only human scabies and lice can infest and these are medical conditions, notes on real medical problems and medications that can produce sensations of itching and formication, seek medical help for “support” even while trying to ID the problem, etc. This would be geared to send to those seeking help.

Note: This is why we recommend the use of terms such as “unexplained dermopathy” with the sufferer as it remains neutral.

Dr. Mike Potter’s “Invisible Itches: Insects and Non-insect Causes”
Penn State’s “Is Something Biting Me?”

If anyone knows of any other resources like this, please let us know by e-mailing stoppests@cornell.edu.

For Both Presenters

Are there any good publications that can be given to those who experience delusional infestation?

http://www.ncbi.nlm.nih.gov/pubmed/19822895

-----