Morgellons Disease

[Fermata]

Inspired by the thread about hearing voices, I've encountered three patients in the past year who self-identify as having this problem. They also have a website and seem to now have a study under way in the Kaiser Permanente system.

http://www.morgellons.org/

All three of the patients that I have encountered were in the primary care setting and by presentation had been to many physicians(with one, 20+). All three demanded an answer for the discomfort/picking and preemptively refused psychiatric consult.

In a psychiatric capacity, what is appropriate management? None of them seemed to have a Munchausen flavor to them. Can it be written off as delusional parasitosis? I'm not sure I'd feel comfortable referring for biopsy.h

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[OldPsychDoc]

Some phrases I've found useful (keeping in mind that if they're talking to me, they're allowing psychiatric input):
"I don't know what's going on with your skin, but..."
"Clearly this is causing you a lot of distress, so let's see if we can find a way to help you manage that."
"You've been going through a lot, and you easily meet criteria for a major depressive episode because of that. Let's see if we can offer some treatment for that now."
"Since no one in the medical community knows exactly what causes this or how to treat it, let's focus on helping you find some new ways to cope with it..."

Good luck!

 

[nitemagi]

Some phrases I've found useful (keeping in mind that if they're talking to me, they're allowing psychiatric input):
"I don't know what's going on with your skin, but..."
"Clearly this is causing you a lot of distress, so let's see if we can find a way to help you manage that."
"You've been going through a lot, and you easily meet criteria for a major depressive episode because of that. Let's see if we can offer some treatment for that now."
"Since no one in the medical community knows exactly what causes this or how to treat it, let's focus on helping you find some new ways to cope with it..."

Good luck!

OPD, I like your approach, and its very in line with where DSM-V is going with the replacement of somatoform disorders, particularly with CSSD. Some people have cancer and aren't distressed, some people have cancer and get incapacitated with distress. It's tough for us to really know what's medically unexplained, so better to focus on distress from somatic symptoms, regardless of etiology.

 

[kugel]

Some phrases I've found useful (keeping in mind that if they're talking to me, they're allowing psychiatric input):
"I don't know what's going on with your skin, but..."
"Clearly this is causing you a lot of distress, so let's see if we can find a way to help you manage that."
"You've been going through a lot, and you easily meet criteria for a major depressive episode because of that. Let's see if we can offer some treatment for that now."
"Since no one in the medical community knows exactly what causes this or how to treat it, let's focus on helping you find some new ways to cope with it..."

Good luck!

Completely agree. I've used:
"Surely you know that stress affects many illnesses, especially skin disorders from acne to psoriasis, so I see no reason to think this would be different. While we continue your efforts to get answers from the dermatology world, I'd like to try an help boost your resistance and your immune system by reducing the stress on your body by reducing your anxiety and helping your sleep."

"Have you noticed that you're having trouble concentrating on anything else? Of course you are. I certainly would be with something like this. So let me see if I can help your ability to concentrate and be able to think about other things. There are medicines that can help you be able to think about what you want to think about. One is Risperdal. It often helps people think a little more clearly. Have you heard of Risperdal?"

"One way to help while you await a final answer, would be to reduce your skin's response to the lesions. It looks to me like there's an element of allergic and inflammatory response around the lesions. I think maybe some antihistamines would assist with reducing the skin's reaction, and if we dose it correctly, the same medicines could help your sleep and your anxiety. And I think you'd agree that anxiety and poor sleep make it that much harder for your body's natural defenses to work. Now I always like to use as few medicines as possible, don't you? You do, don't you? So anytime I can treat multiple problems with only one medicine, I like to do that. That makes sense, doesn't it? So if we dose the antihistamine correctly, we could treat any allergic portion of your skin's reaction and we could also treat poor sleep and treat anxiety as well. Would you be willing to try that for a couple weeks and let me know how our plan is working, or if we need to increase the dose?"

You'll notice that in order to "sell" the treatment plan, I ask multiple questions along the way to get the "customer" to start saying "Yes" to everything I ask. And I preface each question with a presumption that any reasonable person would say "Yes." This is an old sales technique, and quite effective. You'll even see it used by hypnotists as part of the suggestibility process. This can be extraordinarily helpful to get a patient engaged in a treatment plan that he would otherwise not want to do. Then, after you get them to say "Yes" to the plan, you keep talking about how reasonable the patient is and how their desires are completely normal and how anyone going through the same stress would want exactly the same things. And you THANK THE PATIENT for allowing you to assist in this very interesting case and for affording you the PRIVILEGE of their trust and attention. And as you finish, you THANK THE PATIENT again for being so open to different approaches and for making it so easy for you and the patient to reach a treatment plan TOGETHER because the whole medical process works so much better when the doctor and patient work as a TEAM. And then you THANK THE PATIENT again for allowing you to part of the TEAM along with the patient who is always in charge of the Treatment TEAM.

 

[Ibid]

Kugel

The trouble is that most people believe that this is how they practice. The number who really do is much smaller.

 

[Bellpinger]

One might try reading the following at pubmed:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3047951/

about a case series of 122 of Morgellons patients with clinically confirmed microscopic fibers of unknown etiology in the skin and other articles by the same authors.

 

[nitemagi]

One might try reading the following at pubmed:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3047951/

about a case series of 122 of Morgellons patients with clinically confirmed microscopic fibers of unknown etiology in the skin and other articles by the same authors.

If you read it more closely, the fibers were not microscopic. There is a "personal communication" citation that fibers were examined by the FBI and found to not respond to heat or chemical means. I'd feel a little better if there was corroboration of that.

 

[Bellpinger]

The free dictionary www.thefreedictionary.com/microscopic defines "microscopic" as:

"1.
a. Too small to be seen by the unaided eye but large enough to be studied under a microscope.
b. Of, relating to, or concerned with a microscope.
2. Exceedingly small; minute: . . . .
3. Characterized by or done with extreme attention to detail: a microscopic investigation"

The authors of the pubmed article described their methods, which included magnification of 30x-60x, and Figs. 3-4 were described as photos at 100x and 200x of the skin. Is that microscopic in scale? Maybe. Perhaps in most primary care settings clinicians or staff members do not do examinations of skin "with extreme attention to detail." It must take precious time to do that.

Indeed, it would be nice to have corroboration of the FBI related "personal communication."

 

[billypilgrim37]

It's amazing how themes run in this board. Between this and the DXM thread, it seems to be "people can't tell the difference between legitimate research and smoke and mirrors."

 

[Bellpinger]

Completely agree. I've used:
"Surely you know that stress affects many illnesses, especially skin disorders from acne to psoriasis, so I see no reason to think this would be different. While we continue your efforts to get answers from the dermatology world, I'd like to try an help boost your resistance and your immune system by reducing the stress on your body by reducing your anxiety and helping your sleep."

It would be so nice if more than a very miniscule portion of dermatology was actually looking for answers. Some practitioners say they are practicing "psychodermatology", may take one quick look at a patient, decide what psychiatric diagnosis a patient has, and efficiently gets the patient out the door. Next.

There does not seem to be much curiosity or research going on in dermatopathology or dermatoepidemiology that is remotely relevant to Morgellons. Dovigi in Dermatopathology, reported finding fibers in the mouth in a single case report (perhaps similar to fibers reported in the FBI "personal communication"), examined one fiber carefully, and still seemed to go for delusional parasitosis, for example. That is about it as far as I have found in dermatopathology lately. Smoke or mirrors?

Biopsies of self-identified Morgellons patients often are found to contain "textile contamination" with non-specific inflammation of tissues. That was mentioned by authors of the pubmed article mentioned in an earlier post.

Delusional parasitosis (or delusional infestation), is sometimes defined as an "overvalued idea" along with corresponding aberrant "skin sensations" in some derivations of dermatology. Not quite DSM-IV-TR. What will be the criteria in succeeding DSMs? Who will even read or care? If a patient shows anything to a "psychodermatologist", even a photo, it might be considered the "matchbox sign" and considered as the only sign needed for a delusional parasitosis Dx in some places. (I can provide references or links for these examples.)

Patients often wait weeks to see a derm. Is it wrong to expect to be examined carefully, with optical instruments and Woods light in a dermatology office and not be summarily dismissed without much of an exam at all? Patients may also have had very reasonable expectations as to what might have been taught in the particular specialties they have previously consulted before they were referred to psychiatry. Instead, they sometimes report having received a brushoff disguised as some version of "psychiatry." That is not at all like the psychiatry I would have expected, or the dermatology, either, if that means study of the skin.

Psychiatrists are getting flack that they do not deserve because other practitioners often are not doing even minimally their own chosen areas of medicine. Do not assume that apropriate R/Os have been even attempted. Please look into what is really going on that results in such extremely angry patients. Many of the right questions are being asked here, but don't make too many assumptions about what goes on in other areas of medicine.

Psychiatrists are genuinely respectful to patients IMO, very well trained, and also tend to be concerned with ethics and diagnostic specifics. In some other disciplines, there may be different emphases e.g., far more emphasis on expediency.

Asking a very hypothetical question, if dermatologists make psychiatric Dx that do not follow current DSM criteria and prescribe antipsychotics, might psychiatrists prescribe antibiotics and antiparasitics that might help the patients' skin as well as doing what is needed to help patients cope with the stress, after having read and analyzed literature on Morgellons involving such places as Case Western Reserve University, etc., and determining if there is a reasonable fit based on pt report, presentation, etc? Hypothetically, there would not necessarily need to be a Dx of the M word, just something general that might fit the various axes and help the patient, along with whatever precautions, labs, monitoring that might be appropriate, and other factors one might need to consider.

I am not a doctor, and I am asking hypothetical questions, not giving medical advice. Until there is more literature on Morgellons, what can residents, attendings, etc., reasonably be expected to do? I truly believe that the majority of psychiatrists truly want to help patients. I sometimes have less confidence about some practitioners in other areas of medicine.

I am new here and certainly hope I haven't broken any rules. Apologies in advance if I have and I hope you will allow me to continue to learn from you on this forum.

 

[Bellpinger]

Correction: Dovigi was published in Am. J. Dermatopathology, not Dermatopathology as I earlier stated. My apologies for that incorrect reference.

 

[Bellpinger]

I would like to ask more hypothetical questions. If a clinician is concerned about obsessions, compulsions or possible delusions in a patient claiming to have Morgellons, might a clinician in the psychiatric setting try a brief version of a "paradoxical intention" type of exercise?

If there is a small room, where a patient could have privacy and access to a video monitor for the patient’s use, might a clinician instruct a patient in the use of a device, such as something called an “Eyeclops,” for example, or a similar device, then instruct the patient to examine an area of skin of concern to the patient with privacy (unless for some reason patient might need to be observed, with proper consents), for about 30-40 minutes? (The Eyeclops is a lighted magnifier/camera that can be attached to the video monitor.) Might a mirror also be available to allow a patient to examine areas difficult to view, such small hand mirror or something attached to a clamp of some sort?

At the end of the alotted time might the clinician and patient discuss the experience and view the monitor together and any photos that the patient might have taken? Might there be also be an assurance from the clinician that this type of exercise would not be considered any form of the "matchbox sign"? Hypothetically, might an angry patient become much calmer, begin to trust the clinician, and obsess less?

 

[newpsych]

You'll notice that in order to "sell" the treatment plan, I ask multiple questions along the way to get the "customer" to start saying "Yes" to everything I ask. And I preface each question with a presumption that any reasonable person would say "Yes." This is an old sales technique, and quite effective. You'll even see it used by hypnotists as part of the suggestibility process. This can be extraordinarily helpful to get a patient engaged in a treatment plan that he would otherwise not want to do. Then, after you get them to say "Yes" to the plan, you keep talking about how reasonable the patient is and how their desires are completely normal and how anyone going through the same stress would want exactly the same things. And you THANK THE PATIENT for allowing you to assist in this very interesting case and for affording you the PRIVILEGE of their trust and attention. And as you finish, you THANK THE PATIENT again for being so open to different approaches and for making it so easy for you and the patient to reach a treatment plan TOGETHER because the whole medical process works so much better when the doctor and patient work as a TEAM. And then you THANK THE PATIENT again for allowing you to part of the TEAM along with the patient who is always in charge of the Treatment TEAM.

I wonder if this is where the "doctors are manipulative" thought comes from...are we supposed to be salesmen? Obviously we are trying to help the patient to the best of our abilities, but where exactly is the line between manipulation and presenting the options and facts? (I'm not saying there is anything wrong with the technique described above, just new to the field and curious...)

 

[Josimmons]

I would like to ask more hypothetical questions. If a clinician is concerned about obsessions, compulsions or possible delusions in a patient claiming to have Morgellons, might a clinician in the psychiatric setting try a brief version of a "paradoxical intention" type of exercise?

If there is a small room, where a patient could have privacy and access to a video monitor for the patient’s use, might a clinician instruct a patient in the use of a device, such as something called an “Eyeclops,” for example, or a similar device, then instruct the patient to examine an area of skin of concern to the patient with privacy (unless for some reason patient might need to be observed, with proper consents), for about 30-40 minutes? (The Eyeclops is a lighted magnifier/camera that can be attached to the video monitor.) Might a mirror also be available to allow a patient to examine areas difficult to view, such small hand mirror or something attached to a clamp of some sort?

At the end of the alotted time might the clinician and patient discuss the experience and view the monitor together and any photos that the patient might have taken? Might there be also be an assurance from the clinician that this type of exercise would not be considered any form of the "matchbox sign"? Hypothetically, might an angry patient become much calmer, begin to trust the clinician, and obsess less?

In my view, they may obsess less with your above suggestion. More so if you sit with them whilst they applied alcohol hand gel on their skin and then did the above - They could then show you a 'before and after'.

Building trust with this client group is very important, as they are on the margins of any health care system. (I'm an OT in the UK on the 'front line' with Morgellons).