Appointment Tips for Morgellons Patients
TIPS ON SURVIVING YOUR DOCTOR APPOINTMENTS
How to avoid the diagnosis of Delusions of Parasitosis—or revisit that diagnosis with your dermatologists—armed with the right information
Without doubt, a great injustice continues in the practice of medicine toward those of us who have the disease called “The Fiber Disease”, “Elliott’s Disease”, “Unidentified Skin Parasite Infection”, “Morgellons”, “Morgellons Disease”, and other names. I use the term Morgellons (or the abbreviation ‘MgD’) as that seems to be the name most widely used.
. Mary Leitao, founder of the Morgellons Research Foundation, first used this name because of its similarity to a description of a children’s disease in 17th Century France.(1)
When this disease is recognized as real and as a separate, unique disease process by the Center for Disease Control and Prevention (CDC) or another organized medical group, it is likely the name will change! Going through several name changes and revisions is common for newly described or newly discovered disease processes.
Now why is that important?
TIP # 1: Be aware that you health care provider (HCP) may have never heard of Morgellons disease! You must know as much as possible in order to educate your health care provider. Plus, a search of the medical literature by your HCP will not provide the information he or she normally expects to find when trying to learn about a new disease. We will include references and information you may wish to print and share with your HCP on a separate page.
The most bizarre and obvious symptoms of MgD are, of course, found in the skin. Naturally then, dermatologists are often consulted by patients struggling to understand what’s happening to their body! Thus, attention is focused on the skin symptoms and scant attention paid to other symptoms common in Morgellons patients!
TIP # 2: For the most part, dermatologists have been neither helpful nor kind to patients with Morgellons disease. There are no effective treatments known at this time. I would personally discourage visiting a dermatologist if you think you have Morgellons disease. Your family practitioner or internist is more likely to be open-minded and pay attention to odd, unusual symptoms you report than is a dermatologist!
If you have a long term relationship with your private physician, you are more likely to be heard and to receive appropriate medical care than if you consult a medical practitioner you’ve never seen before! Not only will your HCP know more about you and your overall health, he/she will also know your prior level of social and psychological function. Thus, a bizarre story is less likely to be dismissed as the “ranting of a nut-case”.
But, do not forget that what we see in our skin has not been recorded in medical textbooks or literature. Main-stream medical practitioners thus naturally feel great skepticism upon hearing the history of Morgellons patients.
TIP # 3: Do NOT describe in great detail those things you’ve observed in and on your skin!
As a physician, I completely hate the advice I just gave you! In general, the more complete and accurate the patient’s medical history, the more likely a medical practitioner is to arrive at the correct diagnosis. But in this particular situation, going into great detail can cause your HCP to jump to conclusions about your mental health and be unable to get a picture of all the problems you’ve developed since you’ve had this disease!
Many patients become obsessed by the skin lesions and spend hours every day looking at their skin. Most also are guilty of a degree of “self-mutilation”.
From my personal experience, this practice is understandable. The lesions—generally open and with a crust (scab)–are uncomfortable in a vague, difficult to describe way. The sensations I’ve experienced are a combination of itching, burning, stinging, warmth, and the vague sensation of a foreign body present in the skin under the crust.
Occasionally, the sensation becomes intensely painful. I describe that as a sharp, needle stick type (sharp) pain so intense it is very difficult to ignore. Usually, that intense sensation is brief—a few seconds. It becomes very distressing on those occasions the pain does not subside promptly!
When the scab is removed, and some of the oddities removed from the skin with tweezers or other tool, that lesion often is significantly less bothersome. It just feels better! Unfortunately, this practice enlarges the wound and interferes with the healing process.
TIP # 4: “Pick” your skin lesions as little as possible!
When that advice comes from someone who does not have Morgellons, it can be very frustrating! The need to look at and manipulate the skin lesions is obsessive-compulsive at times! Know that I understand how difficult following this advice will be! I also know that the skin lesions do not heal in a normal manner and often spontaneously open, ooze, and scab over! Sometimes this will occur as a result of unconscious scratching. But lesions do open without any mechanical trauma and without even being touched! Many patients have observed this phenomenon.
It’s not productive trying to explain all this to your HCP. Wounds are not supposed to behave that way! Save your time and focus on other topics during your office visit!
TIP # 5: Get your act together! Try to be as calm and composed as possible during visits to your HCP.
There seem to be several stages patients experience after becoming infected with Morgellons. The first weeks and months are often the worst! Most patients initially experience confusion, anxiety, and a degree of desperation. What we see and experience is so bizarre it is almost unbelievable! The emotional upset often causes agitation and may progress to a full-blown panic attack!
When things are this bad, the sensible move usually is to see whatever doctor or health facility is available!
If you show up at your local Emergency Room or walk-in medical clinic in an agitated state—and accurately report what you see happening to your body—you are likely to get several days of ‘adult time-out’ in the local psychiatry unit! If you make any comments about your stress level such as, “I just can’t take it anymore,” or “This has become unbearable”, it is likely you will be assumed to be suicidal and guarantees you’ll get a little ‘time-out’ experience!
I don’t know details or differences in the law in different states, but if you are felt to be a danger to yourself or others because of your mental state, you can be involuntarily committed to a psychiatric unit for 72 hours for evaluation. And weekend days may not count!
It takes an emergency court order to get out of this nightmare scenario early! Getting a judge to issue such an order can be a challenge! At the least, making that happen requires resources and contacts not available to most patients!
TIP # 6: When talking to your HCP, avoid certain specific terms when describing your symptoms. For example, even if you think you see tiny worms or bugs in your skin, keep it to yourself! It’s even risky to say you have the sensation your skin is crawling or “something” is moving in the tissues under your skin.
If you say anything that suggests you think insects are living in your skin and causing your symptoms, most HCP’s will get an odd expression, raise their eyebrows a bit, and seem more intense and less friendly. But if you say that to your dermatologist, it’s likely you’ll immediately see his eyes glaze over as his brain shuts down! It seems almost a conditioned response!
You should understand that all doctors look for ‘patterns’ in the patient history. Of course, human beings are unique, creative, and may not behave in an expected manner. But we commonly fall into behavior patterns in response to events in our lives—past and present! Plus, many diseases have consistent patterns in the symptoms they produce. Good, experienced clinicians look for these patterns and incorporate them in the diagnostic thought process.
The down side of this way of thinking is the ‘trap’ to which the HCP can all too easily fall victim. When the pattern suggests a particular diagnosis, the HCP may only ask questions aimed at proving the conclusion he’s already reached. He may even fail to ask certain questions if the answer might shed doubt on his initial diagnosis!
Dr. Randy Wymore made a statement about the way a good scientist plans a research project that made sense to me. He said that a good scientist starts with a hypothesis—his personal theory about the likely answers from science research he’s about to start. Then the research is designed to disprove the hypothesis! If he is unable to disprove it, the hypothesis is probably correct.
The practice of medicine is certainly not that ‘cut and dried’. That way of thinking does, however, hold lessons. Health care providers don’t have to focus all their questions on disproving their initial impression. But it is not intellectually honest AND it is not in the patient’s best interest if the clinician jumps to quick conclusions and does not explore other possible diagnoses!
Sadly, as reported by Morgellons patients, many of the dermatologists who they’ve seen immediately diagnose DOP if a patient mentions bugs, infestation, skin parasites, or even a “creepy-crawly” sensation which feels like insects crawling on the skin. If the patient has also brought it samples, analytic brain function in the dermatologist ceases. The thoughts likely are something like; “Another crazy!” “Third delusional patient this week.” “Thank goodness this is an easy one—I may still make my tee time……”
Now here’s an interesting fact to think over; if the patient mentions fibers in or from his skin, the dermatologist is likely to jump to the DOP diagnosis!
None of the original literature describing DOP mentioned fibers. Older reports and published research up to a few years ago make no mention of fibers. It has just been in the last few years that the dermatology literature has begun to mention fibers as part of the delusion in DOP patients.
Soooo……my question is this. Why have dermatologists seemingly accepted fibers as part of the DOP delusion without question? Why have none of the “experts” in DOP found this consistent change in the history from patients they diagnose as DOP odd? Since many patients now report the fibers, and this was not part of the delusional patients’ “medical history” until recently, why have no dermatologists considered that this change might indicate there is something new and different about DOP patients?
Sadly, if you’ve made it to this web site and are reading this, it’s likely you’re already aware of how the system works for Morgellons patients! If you’ve seen a dermatologist, it is very likely you’ve been given the diagnosis of ‘Delusions of Parasitosis’ or DOP. So let’s next discuss a strategy to “re-visit” that diagnosis with your dermatologist.
TIP # 7: Have the proper information in hand when you next consult your dermatologist.
Perhaps one of the most important facts you need to understand is that DOP is a “diagnosis of EXCLUSION”. In medicine, that is a specific category for those disorders which have symptoms which are common to many illnesses and for which there is no specific test that can prove or disprove the diagnosis.
Thus, there are certain requirements which must be met before a diagnosis of exclusion should be given. Basically, testing must be done to rule out all the other medical problems which can produce the same or similar symptoms. This may include laboratory testing and X-ray testing, but also may involve consultation with specialists in other fields. For the diagnosis of DOP, this might include psychiatrists, parasitologists or entomologists!
One suggested diagnostic protocol is found at the University of California at Davis web site at http://delusion.ucdavis.edu/protocols.html
You should study and understand as much as possible about this process. If you have been diagnosed as having DOP and have not had such an evaluation, your HCP is not practicing by recommended standards!
I have repeatedly heard that most Morgellons patients have been diagnosed as DOP after only 1) telling their story (medical history), and 2) showing the dermatologist the samples of odd things they’ve collected from their skin.
Bringing samples of skin, hair, etc. to the dermatologist is called the “matchbox sign”. This name was given because years ago, when the term was first coined, the most common container used by patients for their samples was a small matchbox! Today, some dermatologists call it a “baggie sign” or “saran wrap” sign. Think for a moment about this practice. It is really not at all odd that patients would bring what they’ve picked from their skin for the doctor to examine. We are used to providing samples when we visit our doctor. We expect to pee in a cup, provide blood samples, and subject ourselves to various X-rays and other procedures when we see the doctor. Taking in a sample of the weird things in our skin seems the natural and right thing to do! Another BIG MISTAKE!
Most patients report the doctor does NOT examine their carefully collected specimens. Not only is this frustrating, but when you’ve tried to help the doctor by showing examples of the odd stuff you’ve seen in and on your skin, it really hurts when that is used by the doctor to label you as psychotic! So, obviously…..
TIP # 8: Do not take samples to your doctor visit! Don’t walk into the trap. Make the dermatologist ASK for any samples he or she might want!
While it borders on the irrational, I must believe the many, many patients who report the dermatologist didn’t even examine their skin!
When I was in training, I was taught that certain things should always be done at each patient encounter! And, those things should always be done the same way, each and every time! By doing those things every time and by doing them the same way every time, the process becomes second nature and very efficient. Most importantly, you are less likely to overlook or miss important physical findings if you do things this way!
And you know, folks, I was taught that doing a physical exam was part of the patient visit!
Certainly a complete, head to toe physical exam is unnecessary for each visit for a particular problem (a “sick visit”— as opposed to a “check-up” when everything is examined). But an examination of the area of the body in question should be done! (This is often called a ‘limited’ or ‘problem-specific’ or ‘problem focused’ exam).
So, in my professional opinion, if you have not been examined by the HCP you have consulted, you haven’t received appropriate medical care!
If you’ve looked at the UC Davis protocol for diagnosing DOP, you’ll see they recommended a “complete physical examination and laboratory evaluation.” Note they specifically do NOT recommend a complete skin examination. They recommend a complete physical examination!(2)
Now, from my perspective, that seems to be an obvious, ‘no-brainer’ recommendation! If you are trying to find the cause of your patient’s symptoms, and there are several medical conditions which potentially can cause those symptoms, you should use all the information you can obtain to evaluate your patient!
Even if it is common practice among dermatologists to diagnose DOP with only a suggestive history and a positive matchbox sign, it is NOT GOOD MEDICAL PRACTICE! Just because a lot of dermatologists do it that way doesn’t make it good medicine!
If they are reading this, any dermatologists who have cut corners and diagnosed DOP without doing the recommended evaluation are probably pretty angry at me right now. The next paragraphs may change that to pure hatred!
If a patient is misdiagnosed, or an important problem is not diagnosed, that can be an example of bad medicine. It may only represent the difficulty arriving at the correct diagnosis in some situations. This is especially true for rare disorders! So even excellent doctors can have difficulty making the correct diagnosis on occasion!
It can also occur simply because of the humanity of physicians! All physicians are human beings and thus make mistakes! The best physicians try to learn from each mistake and struggle to make as few as possible!
The situation is completely different for many patients who have been labeled delusional. If a diagnosis is given without doing the tests and evaluations recommended by the experts in that field, there can only be one conclusion! That practitioner is cutting corners and practicing bad medicine!
Now, there is nothing illegal about practicing a poor standard of medical care just as there is nothing illegal when a medical mistake occurs.
But, if the patient suffers harm as a result, and can demonstrate that the harm suffered was a direct result of bad medical care, what the law calls a ‘tort’ is created.
Sooooo….., if this situation applies to you, it is quite possible you will have grounds for a medical malpractice lawsuit in the future!
A necessary step, should you undertake such legal proceedings, would be to prove the diagnosis given you was wrong. That should be relatively easy once Morgellons is recognized as a real disease!
Writing this has not been easy for me! I’ve never been sued, but I have been involved peripherally in one malpractice lawsuit and had to give a deposition in another. That was emotionally difficult, but nothing compared to the upset I saw in the physicians who were being sued. (In both, charges against the physicians were eventually dropped.)
I would hate to cause anyone to have such an unpleasant experience! But my sense of moral right and ethical behavior demands I speak out against a bad medical practice which hurts patients.
I also have a sense of outrage that many, many patients relate being treated in a condescending, demeaning manner after being diagnosed delusional! The sense of utter humiliation they felt after contact with medical personnel hurt me to my very center! I have been ashamed that members of my profession would behave in such a manner!
Indeed, behavior such as this violates one of the most important concepts taught to medical students, “Primum, non nocere”.(4) This Latin phrase means, “First, do no harm”. Contrary to popular belief, that is not part of the Hippocratic Oath. It is, however, a concept which should be considered any time a health care provider makes a decision about patient care!
Having a psychiatric diagnosis can carry a stigma. When seeing a physician for the first time, many Morgellons patients report a change in the attitude and demeanor of the new doctor when he learns of the prior DOP diagnosis. Many even report a change in the behavior of other medical staff members upon learning about the diagnosis! The condescending attitude and skepticism the patients experience makes them feel humiliated! As they receive no medicine or treatments to help their symptoms, and are treated with condescension rather than compassion, many patients feel abandoned by the entire traditional medical care system!
Much has been written in the last few years about both patient rights and patient responsibilities. The “President’s Advisory Commission on Consumer Protection and Quality in the Health Care Industry”, appointed by President Bill Clinton(5), published in it’s report in 1998 the “Consumer Bill of Rights and Responsibilities”. It states that “consumers have the right to considerate, respectful care from all members of the health care system at all times and under all circumstances.”(6,7)
This report discusses the importance of mutual respect in the doctor/patient relationship. It also discusses the responsibilities each of us has as a patient.
You should review these rights and responsibilities. As a patient, you have the right to be treated with dignity and respect. And, as a patient, you should be respectful of your HCP even if that person is a complete ass! That will clearly point out the moral ‘high ground’ YOU are choosing to walk. It also leaves the HCP with no possibility of saying his bad behavior was a response to your behavior!
You have the right to file a complaint against any health care worker who has treated you with anything less than with dignity and respect. (The president’s report discusses the complaint and appeals process.)
Insurance companies have specific protocols and procedures to deal with complaints from patients insured by their company. Hospitals also have such a system in place if the episode occurred within the hospital. Those are obvious places to file your complaint. But you also should be aware that complaints can be filed with your state’s agency responsible for issuing licenses to medical personnel giving them the right to practice in that state.
If you have been treated poorly by any HCP you’ve consulted, it really is worthwhile to file a complaint. You may not see any result and the process can seem to be a waste of time. But, as a member of the medical community, I assure you such complaints are noted and do have an impact. I hope that before you file such a complaint, you consider direct communication with the HCP. Armed with some of the information I’ve discussed in this document, perhaps you can build a relationship with that HCP which does involve mutual respect. That would certainly be a best case scenario!
Unfortunately, I suspect most of those medical people who have had such a callous, condescending attitude toward patients they thought were delusional are so arrogant they will not be reasonable.
November 1, 2006
Gregory V. Smith, MD, FAAP