Delusional parasitosis

Cecil's Columns/Staff Reports
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The first part of this response as to suggested diagnostic evaluation (up to the statement about Demodex mites) makes sense - and is in fact represents much of the standard workup for patients with persistent itchy symptoms of unknown etiology (additional items such as excluding a systemic malignancy (which may on occasion cause skin lesions and/or pruritis and doing a careful inventory to rule out allergic causes (including an inventory of cosmetics and household products) also may be useful.

Where Ever Hopeful’s suggestions start going off the rails are the recommendation for quantifying Demodex mites. These are found in pretty much everybody’s skin, and I know of no index of “infestation” that predicts whether or not they might have medical significance (which based on evidence to date largely revolves around their possible role in acne rosacea). As for PLEVA, the inflammatory skin condition EH tells us she was diagnosed with years ago, most cases are idiopathic (no traceable trigger), while some are thought to represent an abnormal immune response following infection with a number of agents, including Epstein-Barr virus and HIV. The link to toxoplasmosis is pretty tentative (for one thing, the drugs that have shown effectiveness in treating PLEVA include none of the cocktail of antibiotics used to treat toxo), and it would be questionable at best to test for toxo (as well as babesiosis and a raft of other exotic infectious agents), especially for those patients who walk in with no skin lesions at all but a sensation that parasites are crawling under their skin.

At what point do you halt the million-dollar workup and consider the possibility of a non-organic disorder - especially when the patient will not accept that there is no mysterious undetectable parasite? EH would not even be content with testing for a freakishly rare agent in the U.S. like leishmaniasis:

I think the crux of the matter can be found here:

This is the path a few in medicine have followed for poorly defined and dubious disorders like “Multiple Chemical Sensitivity” syndrome. The question that needs to be asked is whether patients with delusional parasitosis are best served by ignoring the best evidence for the etiology of this problem, and avoiding the use of effective therapeutic agents, in order to avoid upsetting people who feel they are unfairly stigmatized by a diagnosis of a mental disorder.

Even now I don’t doubt there are practitioners out there who will run elaborate (and unnecessary) testing for this unusual condition, and prescribe potentially dangerous antibiotics and other drugs.

Would this be ethical medical practice?

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The “effective therapeutic agents” are not very effective and they are very dangerous. Much more so than my menthol gel.

I have not advocated antibiotics, unless toxoplasmosis is treated with these.

Jackmanii, if you had a history of PLEVA, and lesions, would you want to be tested for toxo? Or would you think it would be a waste of time and money? My question is quite genuine–I’m weighing my options here.

I have to say that I did present a wish-list and considered some possibly far out protocols, but not in any absolute or adamant way, just thinking about some possibilities. But a good first step would be for the derms to follow the protocols outlined in the standard sources. They don’t do that now, I can assure you. And if, after a good solid standard workup, they are convinced the patient is delusional, they can behave professionally and with tact. To demonstrate that they think the patient is “crazy” is also prohibited by the standard protocols and is well-documented to drive patients away from the very treatment the doctors believe they require. As such, it is unethical.

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I have not prescribed the drug which seems to be the most commonly used antipsychotic agent for delusion parasitosis (pimozide), but based on the available literature it cannot be said to be “very dangerous”, especially in the low dosages suggested for treatment of delusional parasitosis.

I’m not going to attempt to give out specific medical advice.

What one would need to ask oneself (or any competent physician) is whether, after 17 years of the described symptoms, it is all reasonable to entertain the possibility that a bizarre form of chronic toxoplasmosis is responsible. There’s enough accessible medical info out there to provide you with the answer.

I agree.

In the paper I referenced earlier, the authors were faced with resistance among patients to taking pimozide, once they became aware that it was commonly used to treat psychiatric disorders. The physicians attempted to overcome this resistance by telling patients that the drug would decrease their skin sensitivity to certain stimuli. Whether this fudging of the truth is ethical is another matter.

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I am not a doctor (in case there was yet any doubt), but it seems to me that someone with macroscopic fibres in their blood would be rather swiftly dead, as the fibres would tend to aggregate into masses that would cause obstruction of the blood vessels. ‘Abnormal fibres in the blood’ would also seem to be a rather easy thing for a haematologist to detect.

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I believe it has been replaced as the DOC for DOP for safety reasons. I’m forgetting the name of the current preferred med–Ris… ? An atypical antipsychotic. However, both are much more toxic than my menthol gel, which works equally well, if not better.

Fair enough, and this is the question I am asking myself. However, I must remind you that I have had PLEVA for 17 years, not delusions. I was treated one time for it, and it resolved as expected with erythromycin (which I would not take today with that drug’s bad reputation). After that it became chronic, but very mild, and completely manageable with no further medical intervention. I did not go from doctor to doctor and it never caused me to think I had parasites. In fact, during my episode with the terrible itchy rash in 2001, I made only the second visit of my life to a dermatologist.
[QUTOE]In the paper I referenced earlier, the authors were faced with resistance among patients to taking pimozide, once they became aware that it was commonly used to treat psychiatric disorders. The physicians attempted to overcome this resistance by telling patients that the drug would decrease their skin sensitivity to certain stimuli. Whether this fudging of the truth is ethical is another matter.
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It is indeed, especially with the low success rate reported overall for the drug–50%–which this study doesn’t not nearly achieve.

Jackmanii, nothing I say will change your mind. Your beliefs are more unshakeable than mine. If a doctor or researcher would suggest a non-parasitic cause of my multiple symptoms and offer me a relatively safe drug as a trial, I’d take it. So far, that has not happened. The pimozide and newer atypical antipsychotics have not been prescribed or suggested for me, probably because I have always presented with obvious lesions and secondary bacterial infections (always meaning exactly twice).

No one would be more thrilled than I to discover that a fungus, for instance (and this is just an example for the sake of discussion), was responsible for my lesions and other symptoms. Everyone I know who has my symptoms is equally open to the possibility that something other than a parasite is the culprit. However, we have lesions open up on our skin, without explanation, which last for months and in some cases years. I have never walked into a doctor’s office complaining of itching and crawling sensations. I have only requested treatment for lesions and a rash. Itching and crawling did not occur until weeks after the appearance of rash originally diagnosed as contact dermatitis (which was unlikely, given that it was on one arm only, in winter when “contact” would have been limited to clothing), later as scabies (without a scraping being performed). No one has ever looked closely at the lesions on my skin. I have also had lesions that doctors themselves have located that I didn’t know I have. And have had surgeries for those. These facts in themselves would seem to me to raise a level of suspicion that something is going on with either my immune system or my skin.

The status quo is not working, Jackmanii. Delusions of parasitosis, even if accurate, is a diagnosis that is leaving thousands of people without treatment or medical care. With a success rate of 50% at best, even the drugs you prefer are not working very well. And far more people drop out of the system than get treated. You cannot blame patients who are not listened to, worked up properly, or spoken to politely for the failure of this system. Dermatology’s certifiying boards need to push for adherence to the published protocols, at the very least.

Given the number of people involved, the flimsiness of the evidence for DOP, and the lack of clinical trials establishing its validity, I believe it would be appropriate to do more research on the condition. Even a good literature search attempting to demonstrate how the diagnosis has been arrived at and checking the correlation of the success of treatment with psychopharms to good protocols would be a step in the right direction. Failing to reconsider the DOP diagnosis and reconfirm its validity through controlled studies endangers the health of a lot of people. Right now, people are getting sicker, not better, with the standard of care for this illness. It needs to change. And with that, I’m done. The beliefs of doctors are more unshakeable than the beliefs of the so-called delusional patients.

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Excuse me, this is a misstatement. I should have said, “crawling sensations” did not appear until weeks after the appearance of the rash. The rash itself itched at first.

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I also believe that someone should do a double-blinded study comparing the efficacy of the anti-psychotics to a placebo in cases of primary DOP. Given the potent nature of these drugs, I do think it only appropriate to establish that they actually work before continuing to recommend their use for this condition. This has not been done.

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There have been two double-blind studies done supporting the efficacy of the antipsychotic drug pimozide in treating delusional parasitosis (the drug of choice for DP). Here’s a link to an abstract of one of them.

The other such study was done in 1982 by Hamann and Avnstrop. Beyond these trials, the data involves case reports and clinical experience. More info is available in a review on pimozide published in the American Journal of Clinical Dermatology in 2004 (the drug has other indications such as treatment of body dysmorphic disorder). The article also discusses delusional parasitosis as an “encapsulated” disturbance in which the patient otherwise appears normal (patients are not dismissed as “crazy”).

The double blind studies both involve relatively small numbers of patients, probably because delusional parasitosis is rare enough that it would be very difficult to accumulate large numbers of patients at a center for a clinical trial of drug therapy.

Ever Hopeful, it sounds like it would be useful for you to become familiar with Pub Med, the National Library of Medicine’s database on published scientific literature. It’s a good starting point to accessing the work that’s been done on delusional parasitosis.

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And here’s a link to an abstract of an article advocating the use of newer drugs:

http://www.ingentaconnect.com/content/klu/acli/2003/00000015/F0020003/00476718

And from the abstract:
“The conventional antipsychotic most commonly used has been pimozide. We report a series of five cases of patients with delusional parasitosis. Our patients’ demographic characteristics were similar to those in previously published case reports, but instead of being treated with older antipsychotics, they were all treated with atypical antipsychotic agents with favorable results. We will discuss the rationale for this treatment choice, and will review the role of serotonin/dopamine antagonists in the treatment of delusional parasitosis. We will also comment on the possible role of serotonergic antidepressants in the treatment of these patients.”

Another:

http://www.ingentaconnect.com/content/klu/acli/2000/00000012/00000004/00229428

“Objective: To emphasize the availability of safer alternatives to currently standard therapy for monosymptomatic hypochondriacal psychosis (MHP). Method: We report a case of treatment of monosymptomatic hypochondriacal psychosis in an elderly woman with the atypical neuroleptic olanzapine. Results: Treatment with rather low doses of olanzapine led to complete resolution of delusional symptoms. Conclusions: Olanzapine, like other atypical neuroleptic agents, shows promise as a treatment for this syndrome, and it offers considerable safety and side-effect advantages over older agents.”

(An “elderly woman” suggests perhaps a case associated with dementia–but I would have to check to be sure.)

A case report:

http://www.cpa-apc.org/Publications/Archives/CJP/2004/september/lettersmakhija.asp

"For the last few decades, pimozide has been the standard therapy for delusional parasitosis. However, the latest evidence suggests that the newer atypical antipsychotics should be first-line therapy, owing to their better side effect profile and greater efficacy (1–6).

We report the case of a patient with new-onset delusional parasitosis who was begun on olanzepine but whose symptoms resolved with pimozide.

Case Report
Mr W, a white man aged 41 years, presented to emergency after experiencing tactile and visual hallucinations for 3 weeks. He described a “chain-saw worm,” a “shark bug,” and beetles poking their eyes out of his fingernails and boring holes into the skin of his arms, legs, and penis. To help decrease further infestation, he showered for 2 hours and prepared his bed for 6 hours daily.

His medical history is complex but not progressive, including chronic ankylosing spondylitis, Crohn’s disease, and hepatitis C. He has a history of child abuse and treated chronic depression. He had an episode of postoperative delirium but no other prior psychotic symptoms. His 9 daily medications included prednisone, ranitidine, sertraline, and high dosages of morphine."

I do not believe that any double-blind studies have been done on these newer atypical antipsychotics. The stated concerns about the safety of pimozide should not be dismissed. The double-blind studies of pimozide include patients suffering from secondary DOP. Notice the case report above on the newer drug. This is not the type of patient I have in mind, nor do I think that the success with the drug in the patient studied will necessarily transfer to the typical “primary DOP” patient.

I have never suggested that psychopharmaceuticals are not useful in secondary DOP, perhaps especially in patients with dementias. I have not done a lot of research on this topic, but what I have seen suggests there may be a role for these drugs in secondary DOP. My argument concerns primary DOP alone.

I also believe that a research center in an urban area undertaking a clinical trial to determine the efficacy of antipsychotics in primary DOP, if carefully described and advertised, might attract a huge number of volunteers, who would be hoping to show that they were not delusional. This is, of course, speculation, but it could be attempted. (Every time a local new station does a piece on this subject, it is flooded with thousands of calls by people reporting they have “the same thing,” suggesting that urban areas have thousands of potential research subjects.) And if the study were well designed and of a resonably good size, I would reconsider my position. I would be particularly pleased if the study did the kind of careful history-taking and medical work-up a good study should do. And, of course, it would be essential to my thinking to distinguish between primary and secondary DOP.

Ever Hopeful, it sounds like it would be useful for you to become familiar with Pub Med, the National Library of Medicine’s database on published scientific literature. It’s a good starting point to accessing the work that’s been done on delusional parasitosis.
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Thanks, Jackmanii, I am familiar with the resource, but it would cost me thousands of dollars to retrieve all of the studies on DOP. Working on this problem is not my profession and I am self-funded. When I am at a university library, I try to get the ones I can.

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Mangetout, I’m not ignoring your post, but I was hoping that someone with better credentials than I would reply. I have not seen a hematologist. Can you imagine what one would say if I walked in without a referral and asked to have my blood checked for fibers? I prefer life on the outside, thanks.

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I knew I recognized this name. Here is an excerpt from a site co-authored(? - co-created by?) by Dr. Christiansen and last updated in 2005 (by the co-author, Frans Janssens):

"Introduction
Collembola as skin irritants or skin parasites deserve much more scientific scrutiny. Given that the psychotic variant of such infestation has received a lot more scientific interest than the actual infestation itself, risks are that some infestations are too easely categorised as delusional. The main reason is obvious: nothing or very little is known about irritating, allergic or parasitic Collembola that cause contact dermatitis. Only a few cases are actually documented and therefore money for further scientific research is wanting. "

The link: http://www.geocities.com/~fransjanssens/publicat/sidney.htm

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Unrelated to the issue of DOP, and not taking issue with the post quoted with respect to skin-related problems, I would like to suggest that, especially in areas where Lyme disease has a high prevalence rate, physicians (and patients) should be aware of the possibility of babesiosis in patients presenting with flu-like symptoms. This protozoan infection appears to be increasing in frequency in its known endemic areas (mostly New England and the Middle Atlantic states) and to be spreading in range (new cases reported in the midwest and Washington state).

Because the endemic areas include summer vacation spots (Nantucket Island, Cape Cod), and visitors may return to areas in which Babesiosis is unknown, I believe the information is timely:

Here are some links:

http://www.cdc.gov/ncidod/EID/vol11no03/04-0599.htm

http://www.cdc.gov/ncidod/EID/vol9no2/02-0271.htm

http://www.emedicine.com/ped/topic193.htm

http://www.emedicine.com/med/byname/babesiosis.htm

http://www.5mcc.com/Assets/SUMMARY/TP0105.html

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From your collembola link:

*"All the images presented in the paper (the one claiming evidence of Collembola on the skin of persons claiming to be infested with parasites), except the enhanced version of figure 2, do not appear to be from living or recently dead specimens or body parts broken off such but specimens in advanced states of decay…Therefore, since the specimens were freshly taken from new scrapings, “The finding of images from 18 of the 20 symptomatic study participants supports their contention that they have something crawling on or under their skin.” is not supported, unless the other pictures are far better. Under the assumption that the best pictures were chosen for the article, this seems highly unlikely. If Collembola were crawling then the specimens should be part of living specimens…The authors should provide a skin sample including a collembolan specimen to prove their point. The case is considered unproven unless an animal is provided.

Christian, E. in Christiansen (1998 in 2001:in litt.) Germany & Austria:
“… [This] reminds me of several similar cases in Germany and Austria which turned out to be symptoms of what psychiatrists call ‘Dermatozoenwahn’ (delusional dermatozoonosis). This serious paranoid psychosis needs medical treatment, but patients usually refrain from visiting a competent doctor. They rather consult the parasitologist or (quite frequently) the entomologist, being often well-informed about their illusive parasites. …”
“A wealth of medical litterature is available on this topic, but entomologists have not fully realized the problem as yet. I am confronted with two or three cases each year, because Collembola are among the frequently fancied plagues.”

The final slide that I displayed was the quote by Dr. Daniel E. Koshland, former editor of the prestigious Science magazine, which I believe represents my reaction to this interesting foray into comparative medicine, ‘The gene for unbridled dedication to a lost cause will always overwhelm the pure logic gene’. In a wide-ranging colloquial discussion following my presentation, **I found that my colleagues at Harvard who also have examined microscopically numerous ‘fibre bugs’ and other self-collected specimens from patients believing themselves to be infested, had come to the same inescapable conclusion as I had that the vast majority of these unfortunate persons were tormented by a disorder that should most appropriately be treated by a sympathetic psychiatrist." ***

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Jackmannii, thank you so much for all of the information and opionions you have presented. This discussion has been extremely valuable to me.

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Required Plug:

If you gained benefits from your visits to the Straight Dope Message Board, perhaps you will consider becoming a full member so you can continue receiving those benefits after your guest membership expires. :smiley:
I make no pretense of being a doctor or other expert on this or any other topic, but as for the powerful anti-itch properties of the recommended anti-psychotic drugs, if that’s all they do for you and if the cause of the itching isn’t presenting any other pathology I say, “Great! Take the drugs.” I have found one of the keys to a long and happy life is to give as little thought as possible to the wee beasties that might be crawling around on or in me.

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How kind of you to extend such a invitation to a delusional person. I will definitely consider it, especially since I’ll be needing to post again when the offending parasite is discovered. Wonder if they’ll call it toxodermus hopefulii? Tee-hee.

Thanks, but there’s no need–the menthol gel works fine on the itching, costs only about eight bucks for a two month supply, and has no side effects.

Very wise philosophy, Dropzone. I also find that working on something important and doing the best possible job at it is a wonderful sleep aid (I sleep like a stone and never dream of beasties).

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Really? I find interesting and satisfying work interferes with my sleep. Boring and unsatisfying work interferes with my posting.

And if we threw out every member who is a little nuts this place’d be a ghost town. Especially MPSIMS, which seems to require a note from your shrink before you post.

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ER doctors:

http://www.medfools.com/blog/on-call-again.htm

A novel new treatment for DP:

“I got him to GOMER (get out of my ER) by telling him to go to the grocery store and buy peppermint incense and it would make all the bugs leave his house. He never came back.”

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What’s up with this? Anybody know if this journal is legit?

“Alternative cellular energy pigments from bacteria of stealth virus infected individuals.”

In *Experimental and Molecular Pathology *
Volume 78, Issue 3 , June 2005, Pages 215-217

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Alternative cellular energy pigments mistaken for parasitic skin infestations

W. John Martin

Center for Complex Infectious Diseases, 3328 Stevens Avenue, Rosemead, CA 91770, USA

Received 5 January 2005. Available online 23 March 2005.

Abstract
Dermatologists and psychiatrists occasionally encounter patients who believe they are infested with skin parasites. They may report seeing threads, fibers and more solid appearing particles attached to their skin and hair, or appearing on clean bed sheets after sleeping. Some of the particles move spontaneously suggesting a life form. Similar structures develop in long-term cultures of stealth-adapted viruses. They are termed alternative cellular energy pigments (ACE pigments) since they appear to provide a non-mitochondria source of cellular energy that can assist in cellular repair from the virus cytopathic effect (CPE). Particles obtained from the skin of stealth virus culture-positive patients can also display auto-fluorescence and electrostatic properties. Some of the particles are magnetic and can generate gas in an aqueous solution. They also lead to the production of lipid-like crystals similar to those produced in long-term cultures of stealth-adapted viruses. It is proposed that skin-derived particles that form in some of the patients assumed to be experiencing a delusional parasitosis are, in reality, a reflection of the body’s production of ACE pigments.