One of the things I learned in my extended college and
graduate school work is that most people, including scientists and physicians,
have core
In this setting of our core beliefs, the fact is many scientists and physicians are not worth reasoning with about Morgellons. Why? Their presuppositions and ability to explore this illness cluster is simply not open to this possibility. Some physicians have character rigidity and obsessive personality traits that require extreme amounts of data unavailable for many clinical situations. Obsessive personality traits have some benefits in medical science, because they can help a practitioner attend to important small details, but can cause practitioners to fear what is not in their “information box”—their finite brain.
Some are also worn, tired and have limited empathy that causes them to see individuals with obviously clear pathological extreme skin lesions as simply folks who “pick at their skin.” We also know that some individuals working in the medical sciences or as health care providers have antisocial traits or are narcissistic, which makes accepting a patient’s history, over the doctor’s medical world view unlikely. This requires listening very deeply, profound humility, and the belief that we have a great deal to discover about human illness.
Further, the abuse of health care practitioners by litigious patients, plaintiff attorneys, state boards, insurance reviewers, insurance companies paying “reasonable and customary rates” which are only customary for 1940, makes it hard for practitioners to have the time or energy to learn new concepts and explore new illnesses. Some mean well, but are simply keeping their head above water trying to get all the codes right, and manage their huge insurance processing staff.
Further, medical illnesses are becoming the source of polar physician positions. These positions are much like the 1990’s politics of global warming—some feel it is nonsense and some feel it is as obvious as basic math. Some of these polar medical topics include Chronic Lyme disease, indoor mold exposure illness, Babesia, long-term narcotic pain medications, long-term anti-anxiety medications, cash pay vs. insurance pay medicine, the value of organized medicine vs. those who feel traditional medical societies are useless.
So I would suggest that we take a lesson from politics. Do not waste your time trying to convert those with strong passions for the opposing party. You will waste your time. Instead, first make sure you have fully and clearly stated your position to your own party and that they understand what is at stake and have an understanding of the “platform.” In this regard, patients with Morgellons, health care workers with Morgellons, and physicians who believe this is not simply a delusion and treat it, should be educated and included in all Morgellons organizations.
Next, we should reach out to those who do not know everything and are either open to considering Morgellons as an illness, or are too busy and indifferent to oppose Morgellons illness. Both of these groups, over a period of time, might be open to the idea of Morgellons illness, or at least they will refrain from opposing its treatment if they are slightly educated.
Replies to
Common Anti-Morgellons Criticisms
1) Antibiotics can act as placebos and that is what is happening with “cured” Morgellons patients.
The problem with this argument is two fold. First, these are hopeless people who have had some different treatments and they do not generally expect treatments to work. Second, the rate of eventual cure is higher then the expected rate of placebo for antibiotic medications.
2) Anti-psychotic medications help many of these patients so this means they are delusional.
It is sad that some health care workers are very
simplistic thinkers and forget that all medications have a vast number of
“off-label” uses. Indeed, most medications in the
One common use of all anti-psychotics is for the treatment of significant agitation. Another common use is for calming inflammation restlessness and infection restlessness of the brain. I routinely use anti-psychotics for agitated people with infections or medical toxin exposure that makes them terribly restless and agitated. If a patient is exposed to a toxic chemical at a chemical plant, and requires an anti-psychotic to be calmed, no one would think this was a cure.
Again, just
because a blood pressure medication lowers the blood pressure of Morgellons
patients does not mean the underlying trouble is gone. We do not hear from
these anti-psychotic promoters that the skin of these patients becomes cured.
It can be unwise to diagnose an illness purely based on the response to the drug used. Phenobarbital given to a person who is vomiting will stop the vomiting. We would not say they had a Phenobarbital deficiency. We would still look for a possible flu, food poisoning or other intestinal illness—the “real cause” for the vomiting.
I do not believe that any physician in the USA has seen a large number of clear Morgellons patients and that they were all cured of their signs and symptoms and abnormal labs by a mere calming anti-psychotic drug. At best, they were made to experience less discomfort by using the drug—one reason I use anti-psychotics for Morgellons’ inflammation agitation.
3) These patients are not physically ill.
Sometimes one
looks over the Morgellons work up of an internist, infectious disease physician
or a dermatologist and it is clear they are trying to be very careful to limit
any testing. Perhaps they are afraid the insurance companies will not renew
their contract if they order too many tests. Or they will be wasting healthcare
dollars. One can respect this in some cases. Yet I would appeal that Morgellons
patients should have very aggressive work-ups. Limiting their lab testing to
3-4 blood tubes is really saying one has no wish to find abnormalities, and one
is only going to look for severe organ failure. I do not know anyone who thinks
Morgellons is caused by severe organ failure such as kidney or liver failure,
so this is playing at a diagnosis.
4) Morgellons illness is not a medical illness, but simply a specific
delusion.
Simply, this
is not credible because 20,000 things can go wrong with the human body. Why
then are the 20,000 possible “delusions” all the same in general
content. We do not believe in “diabetes delusions,” because we often do extra
basic lab testing to catch early diabetes and because we see a cluster of
people with the same problems. Just because this Morgellons cluster tends to be
restless does not mean they are psychotic—most heart attack patients are
restless and are often given an anti-anxiety medication to decrease their fear,
which also decreases the oxygen demand on the heart.
Again, if you
only do organ failure blood testing you will not find Morgellons abnormalities.
Of course you could also miss cancer, very early diabetes and a heart attack, because these do not usually show up on basic simple lab tests.
Finally, I
have found rare Morgellons advocates who report they know the SINGLE cause of
the disorder. Yet I find 15-20 common abnormal findings and Morgellons is not
reducible to one thing. Indeed, I usually find about 4-8 causes of their
Morgellons, which combine to cause the symptom cluster of Morgellons. A small
sample of these include the many very severe types of Bartonella skin damage,
Babesia, mycotoxin war-like biochemical agents found in 30% of USA structures,
Lyme, various bio-toxins and synthetic toxins, parasitic agents, a fully
exploded inflammation system in the presence of an impotent anti-inflammation
system, and many other causes. In our treatment, we simply list them, and
determine what the most important ones are, and just go down the line. Cures
never happen in weeks or a few months as a rule, but folks can generally be
made fairly functional and comfortable pretty quickly.
5) The skin damage is self-inflicted.
I have a large number of
dermatology books, and some show self inflicted skin damage. These images never
look like Morgellons’ skin damage to me, unless one only looks at very select
areas of itching. Further, as someone who has been around dozens of individuals
with large numbers of fire ant blisters and itching, I commonly see individuals
very agitated with the residual fire ant blister on their feet and legs. In my
attempts to invent a fire ant treatment to prevent damage at the bite site or
death in a rare few, I have intentionally allowed myself to be bitten 15--20x
as I have worked to design a rapid treatment. The day after the bite, many
people want to severely scratch at the bite site due to pain and a severe itch.
On the worst patients I have seen with massive numbers of bites (30 plus on the
feet), followed by itching and picking/scratching the following day, I have
never seen lesions that even remotely look like Morgellons lesions.
Morgellons lesions are
complex, diffuse, deep and have many types of skin presentations all at the
same time. If there is any “delusion” to be found in Morgellons, it is that
it looks like the skin organ itself has become delusional and shows a vast
array of pathology all at the same time. As a research clinician who invents
treatments in many areas of medicine, one should really be careful about
simplistic answers in this age of NASCAR medicine--the physician runs from the
intake door to the exit door faster then an INDY 500 race car, just to make
payroll. Simple answers are often ridiculous answers. And calling Morgellons a
delusion with self-inflicted lesions is something that will embarrass medicine
in the coming decades—in the same manner in which HIV was trivialized and
ignored.
6) I go by studies not people’s
complaints.
It is very surprising to some
physicians to learn just how little of allopathic medicine is supported by
quality studies. Most medicines are used for off label uses with limited
research. Many medical beliefs are based on studies that disagree. Many positions held in each decade are
altered 10-20 years later—this seems to be routine. Medications felt to be safe
based on FDA approved studies, are not safe in later studies—usually due to the
experience of a few patients. In child psychiatry, major changes in prescribing
have occurred based on the bad experience of 1-9 children or adolescents. In
other words, massive medication changes have happened based on the report of a
few patients and their experience or “complaints.”
I once used
an enzyme blocker to stop a blood cancer in one patient, and it worked
so amazingly, it has become the standard treatment for this cancer and some
other related cancers all over the world. One patient changed the treatment of many
cancers, years before any studies existed. Many medical problems have very
little research to guide us clearly, and we often do not have large, double
blinded random studies to guide us.
In modern Lyme
disease, it was a mother and artist, who observed that in her
The use of
“meta analysis” is common in medicine in an attempt to find out what the very
best of the contradictory studies are ultimately saying. Sometimes these
conclusions end up being wrong, based on later Metastudies. Much of what I was taught about pathology and
especially treatment is already dated.
In conclusion,
most physicians have no training in the science of knowing and how to discern
their own biases. They believe it is easy to know based on last months journal
articles and this is simply not realistic medicine.
Much medical
care is mere symptom relief without a full understanding of the cause or
mechanism of the pathology. So much of what we do as allopathic physicians is
to treat abnormal findings, not discover the cause of the abnormal findings.
And we do poorly with illnesses that stump and at times annoy us, because we
did not study 20 years to be left trying to understand something outside our
voluminous training.
We have a
clear large group of patients with very similar troubles, diverse and clear
abnormal labs, profound skin disease and they are found in many places, but
with areas of higher concentration, e.g.,
James
Schaller, MD, MAR