Sample Replies to Their Doubts
One of the things I learned in my extended college and graduate school work is that most people, including scientists and physicians, have core Meta beliefs about what is possible. These are outside their insight and awareness. We see this in religion and psychology pretty clearly. For example, those with terrible parents often are the most passionate about the absence of God. My point is not whether God exists, but that many with an abusive or absent parenting experience core beliefs about useless parents and a useless God. Another example would be children who have been bullied. Some tend to see the world as more dangerous then others, often even after decades without abuse. Perhaps another analogy is politics. By the time one is 45 years old, it is rare to see a major party change if the original affiliation was strong. Democrats rarely will become strong Republicans and strong Democrats will rarely become strong Republicans after 45 years of age.
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
- 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.
- 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 USA are prescribed for illnesses never approved by the FDA. Physicians by experience or study have learned that most medications have other effects and benefits beyond the one use approved by the FDA.
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.
- 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.
- 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 also, 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.
- 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.
- 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 Connecticut community a cluster of youth were getting arthritis. She beat Yale to the obvious.
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., California, Texas and Florida. This sounds like another example of a clear medical syndrome with clusters. Yet, as of this year this Morgellons illness is not in the newest "comprehensive" medical textbook. But I guess there is a reason they continually revise all major medical textbooks, because medicine is a lifetime of constant medical discovery. I only wish so many patients did not have to feel rejected and ignored while health care workers come to accept this medical problem.
James Schaller, MD, MAR