Archive for the ‘DOP’ Category

Delusions of Delusions of Parasitosis (DDOP)

Reprinted with permission from Ahopeful – (The Author)
Source : Here …

Delusions of delusions of parasitosis (sometimes known as DODOP or DDP) is a poorly understood but increasingly common condition, most frequently seen amongst dermatologists, although it can affect physicians of any specialty.

Sufferers of delusions of delusions of parasitosis present with a fixed conviction that a patient (and in severe cases multiple patients) are suffering from delusions of parasitosis. This belief remains firmly held by the afflicted physician, despite being presented with clear evidence of somatic pathology in his or her patient(s). Affected physicians will appear otherwise rationale and rarely display psychiatric comorbidities.

A characteristic sign of delusions of delusions of parasitosis is a refusal for the physician to conduct more than a cursory examination of patients presenting with symptoms of parasitical infestation. In the most extreme cases the physician will also refuse to engage in a professional doctor/patient dialogue.

Whilst the etiology of delusions of delusions of parasitosis remains unknown, there exist several hypotheses as to it’s origin.

One such hypothesis states that delusions of delusions of parasitosis is in fact a ‘meme’, commonly taught to vulnerable physicians in training. Once this belief takes hold, it is extremely difficult for the sufferer to free themselves of this conviction and it becomes increasingly difficult – if not impossible – for the sufferer to approach unfamiliar cases of parasitical infestation without diagnosing delusions of parasitosis.

A modern variant of this hypothesis states that delusions of delusions of parasitosis is an ‘internet disease’ – whereby physicians inadvertently reinforce each others delusions of delusions by reading about them online.

When pressed, sufferers will classically cite flawed, poorly researched and dated medical literature in an attempt to justify their beliefs. They will then go on to transfer their belief system to younger physicians who become similarly deluded. It is thought such cycles have served to perpetuate this condition amongst the medical community – where it has believed to have existed, to a greater or lesser extent, for some 75 years.

The prevalence of delusions of delusions of parasitosis is unknown, and case studies in the literature are few. Some have estimated that over 90% of dermatologists in the UK alone suffer from delusions of delusions of parasitosis. In recent years reports of delusions of delusions of parasitosis have displayed a worrying upward trend.

Treatment of delusions of delusions of parasitosis is troublesome. It is sometimes recommended that the patient attempt to strike up a ‘rapport’ with the physician, in order to gain their trust, and perhaps open their mind to the possibility of explanations other than delusions in patients presenting with symptoms of unfamiliar parasitical-like infestation. However this approach is difficult and is thought to have a fairly low success rate. The physician’s delusions of delusions are frequently firm and will remain in place despite the most striking and rationale evidence to the contrary.

If directly confronted, afflicted physicians may even respond by accusing the patient of suffering from delusions of delusions of delusions of parasitosis, although evidence for this advanced phenomena is beyond the scope of this review and will not be discussed here.

In any case, no randomized controlled trials into the treatment of delusions of delusions of parasitosis have been conducted, and currently it is recommended that it be managed on a case by basis.

Strategies to overcome delusions of delusions of parasitosis in the medical community have been proposed. One such strategy is for patients to apply continued pressure on government bodies to properly investigate increasing reports of parasitical-like conditions in their populations. It is hoped that this approach, whilst by no means a ‘quick fix’, will yield a gradual improvement, and – it is at least hoped – bring some relief to the thousands of physicians currently believed to be suffering from this debilitating illness.

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Morgellons Disease: A hallucinatory parasitosis due to low NO?

I stumbled upon this article written in 2008 and find that the author and I seem to have a lot in common (at least from my perspective). It would seem he took a serious look at Morgellons and used his knowledge and experience to propose an explanation of what might be behind the Morgellons condition. I like the fact that he addresses the DOP angle and puts forth a rather non-spectacular explanation, dare I say a “rather mundane” explanation as to what the underlying cause of Morgellons might be.

His blog, among other things, is about “Repairing the Deficient Nitric Oxide (NO) Physiology that Most Individual Have” so undoubtedly when he read over the list of Morgellons symptoms and complaints he recognized these as having a very real overlap with NO deficiency (mind you we don’t know if it is the cause or merely a symptom of a failing bio-terrain or something else altogether).

The blog post can be found HERE and I will copy in some tidbits to get you started.

Morgellons Disease (MD) is a complex association of symptoms with several suggested explanations. I will add another explanation, that of low nitric oxide. I think my explanation does fit the reported symptoms somewhat better (and simultaneously) and suggests a treatment (increase NO levels). Low NO as an exacerbating factor is consistent with the symptoms and may provide at least some relief (actual and symptomatic) no matter the ultimate "cause".

The two leading explanations are Delusion of Parasitosis (DoP), and actual infestation with unknown disease organism(s) and/or unknown parasite(s). I will go into the symptoms and how the symptoms can be explained by low NO, and then suggest why low NO in particular would lead to feelings and ultimately belief that parasites are infesting the skin. I think calling it a "delusion" while technically correct (depending on the definition of delusion) may not be helpful in that symptoms which lead patient to that conclusion are quite real and not made up. I think calling it a hallucination would be more accurate and perhaps be perceived as less pejorative to those who experience it. The default conclusion that chronic itching of the skin is caused by parasites may be something that is "hard wired" in our nervous systems. An analogy would be phantom pain in a limb that has been amputated. Are people who experience phantom pain called delusional? If not, then people who experience "phantom parasites" should not be called delusional either. The "hallucination" is not in the peoples’ heads, it is in their skin. It is low NO in the skin that causes the itching, low NO in the brain does lead to some clouding of thinking, and also causes fatigue and exercise intolerance.

It’s easy to read this and get your claws out about DOP and other matters, but I think what the author is saying is that what we feel is real, physical, but most likely not bugs, which is now my belief also (and has been for some time).

The article is a heavy duty read for sure. It has me pondering and wondering if he is onto something. It makes me wonder if my protocol rebalanced my deficiencies, the True Protein (great stuff and loaded with Amino’s), the Essential Amino’s, the NAC to detox and control inflammation all were very good for me at least. 

Symtoms of L-Arginine Deficiency (The body uses L-arginine to produce nitric oxide)

Conditional deficiencies of arginine or ornithine are associated with the presence of excessive ammonia in the blood, excessive lysine, rapid growth, pregnancy, trauma, or protein deficiency and malnutrition. Arginine deficiency is also associated with rash, hair loss and hair breakage, poor wound healing, constipation, fatty liver, hepatic cirrhosis, and hepatic coma.

The above is from http://www.vitamins-supplements.org/amino-acids/arginine.php

This is just an introductory post and I am not recommending that anyone go out take L-Arginine, in fact, you shouldn’t do so without working with your doctor. The best approach is an overall healthy terrain restoration approach. The author of the original article seems to think that taking L-Arginine wouldn’t help that much anyway, but I need check with other sources on that. Interestingly, I think Dr. Staninger has found high blood levels of Ammonia in Morgellons patients. All just subtle clues perhaps? Or perhaps nothing at all.

Expect another more detailed post on this once I have a chance to research all the angles …

Infectious Diseases Society of America on Morgellons

Delusional Parasitosis

Boggild AK, Nicks BA, Yen L, et al. Delusional parasitosis: six-year experience with 23 consecutive cases at an academic medical center. Int J Infect Dis 2010; 14:e317–e321.

Boggild and colleagues analyzed 23 consecutive patients with a diagnosis of primary delusional parasitosis who had presented to the emergency department or the infectious diseases clinic at the University of Washington. Their median age was 45 years (range, 31–77 years); 15 were female. Ten patients reported being infested with worms, 8 with an unknown type of parasite or insect, and 1 with lice, and 2 patients reported skin inoculation. Reported symptoms included visualization and/or sensation of parasite movement in 39% and pruritus in 44%; 8 patients had skin lesions, which may have resulted from excoriation and/or attempts to extract or kill parasites, on examination. Eight patients brought in small containers, plastic bags, or tissue paper containing what they believed to be parasites. Only 4 patients accepted psychiatric referral.

Delusional parasitosis may be primary, as in the cases discussed here, or secondary to psychiatric disease, medical illness, intoxication, or substance abuse [1, 2]. The primary form is a “delusional disorder of the somatic type in which the person has a fixed belief” [2, p 784] that exists in the absence of other thought disorders. Thus, patients with delusional parasitosis may have normal mental function in other spheres of their lives and may remain otherwise fully functional. Although the delusion most often involves skin, some patients report the movement of worms internally or their presence in feces. Patients often present small containers containing various material, which they believe represents the parasite that has emerged from their skin or from a body orifice, a phenomenon that has been called the “matchbox sign” or “Ziploc bag sign.” Folie-a-dieux, in which a spouse, other family member, or significant other often shares the delusion, is common and may extend to additional acquaintances (folie-a-trois) or even to an entire family (folie-a-familie).

These patients are often referred to infectious diseases specialists, and treatment is difficult. They have often already seen multiple physicians and have been dissatisfied. As in the series from the University of Washington, patients often resist referral to psychiatrist, and the suggestion of referral may elicit anger. It is reported, however, that some patients respond well to administration of atypical antipsychotic agents.

Some interested parties have given the eponym Morgellons disease to delusional parasitosis, have created a Web site (http://www.morgellons.org/), and have developed an organization that successfully convinced the US Centers for Disease Control and Prevention to formally study “Unexplained Dermopathy (also called ‘Morgellons’)” [3]. Enrollment in the study has been completed, and the results to date were reviewed by an external panel on 24 September 2009, with a summary of their review to be posted in November 2009. As of 13 April 2010, however, the results do not appear to have been released.

References

1. Freudenmann RW, Lepping P. Delusional infestation. Clin Microbiol Rev 2009; 22:690–732.
2. Frean J, de Jong G, Albrecht R. Imaginary bugs,real distress: delusional parasitosis. S Afr Med J 2008; 98:784–786.
3. Unexplained dermopathy (also called “morgellons”). http://www.cdc.gov/unexplained dermopathy/investigation.html.
April 2010.
DOI: 10.1086/653461


This article above was just in this months edition …

My favorite quote …

Patients often present small containers containing various material, which they believe represents the parasite that has emerged from their skin or from a body orifice, a phenomenon that has been called the “matchbox sign” or “Ziploc bag sign.” Folie-a-dieux, in which a spouse, other family member, or significant other often shares the delusion, is common and may extend to additional acquaintances (folie-a-trois) or even to an entire family (folie-a-familie).

This is a real shoddy article I must say. I think Joe’s articles on DOP (available on this blog) show real investigative instincts and a desire to get to the truth no matter what the outcome. This article starts with the conclusion and reveals that no serious investigation was undertaken. This frankly looks embarrassing on the medical communities part.

Finally, the article states that “Some interested parties have given the eponym Morgellons disease to delusional parasitosis”, talk about begging the question. The authors cannot even fathom that Morgellons could be anything else but DOP. After all, we did not start calling DOP Morgellons, rather doctors started referring to us as DOP without so much as an examination. Apparently, DOP is contagious as they go on to explain that it can spread to ones family members and friends. I’m really surprised they didn’t just go ahead throw in the “old internet disease” routine while they were in there.

Epidemic of Mental Illness in Doctors

The emergence of Medically Unexplained Illnesses has revealed an epidemic of behavioral problems and personality disorders in doctors.

Patients expressing unfamiliar complaints to their physicians often induce the “It’s All In Your Head” (AIYH) or the “That’s Impossible” response in doctors suffering from these behavioral problems and personality disorders. Physicians fixated upon the metaphysical belief system of “If we don’t know about it, then it doesn’t exist” are suffering from a mental defect or psychological condition known as “Doctors with Unexplained Medical Beliefs”: D.U.M.B.

DUMB doctors are comprised of subgroups characterized by opportunists who are feigning to be DUMB for monetary gain: “Medicalingering” or of those doctors who are not in possession of sufficient information to render an intelligent diagnosis: “Factlessitious Disorder”. Physicians who are suffering from DUMB disorder place an inordinate emphasis on theories of psychological causality for virtually any unfamiliar complaints that are presented, and manifest a distinctive lack of observational skills when confronted with obvious abnormalities. Doctors who exhibit obsessive preoccupation with psychosocial etiologies should be regarded with extreme caution: “Psychosomatization Fixation Disorder” or “Psychologizing” is a distinctive characteristic of mental illness, and should be considered a warning sign that the individual is not rational and may in fact be dangerously DUMB.

DUMB disorder may be concomitant but should not be confused with “Signs of Thoroughly Unmistakable Physician Intelligence Deficiency” : “S.T.U.P.I.D.”, as a STUPID physician is uniformly incompetent, while a DUMB doctor is only mentally paralyzed into “psychologizing” by unfamiliar symptoms and complaints. An immediate investigation is warranted to assess the prevalence of DUMB and STUPID doctors, and to determine the detrimental impact that physicians suffering from these mental defects are having on their patients and the health care system.


Special thanks to the little bird that sent this to me, this was posted on this thread with permission for anybody to repost. Again, thank you for sending this to me, I didn’t want to use your name and get you into trouble 😉

I literally laughed out loud and it felt great. There is so much truth in the above statement.

Mercury Associations in DOP Accounts

By Joseph Keleher

I noted likely connections to mercury while reviewing some early DOP (delusion of parasitosis) accounts. While it is difficult to draw a direct line between mercury exposure and the symptom set once referred to as DOP, enough probable connections exist to merit a review by a qualified medical researcher (or researchers). Patient exposure falls into use of mercury as a medicinal for treating syphilis and use of cosmetics containing mercury. Each is briefly discussed below.  As mercurial skin creams are still in use in some parts of the world, some relevant cases are presented.

Syphilis

Mercury was used to treat syphilis over a span of 450 years until the introduction of penicillin in 1943 (Tilles and Wallach 1996: 501- 10). Several cases documenting DOP in Wilson and Miller (1946) make mention of syphilis. Case 38, “…had syphilis at the age of 40 and received standard treatment for two years” (Wilson and Miller 1946: 51). Case 41 “…had syphilis at the age of 36 and had five years of treatment” (Wilson and Miller 1946: 52). While mercury as treatment in Case 38 and 41 is not stated, it is likely it was used. Case 46 does document mercury playing a role as, “a ship’s captain (who) complained of itching and creeping sensations which involved the face severely, but all parts of the body had been affected at times. The disorder had begun twenty years previously with a crawling sensation about the genitals and perineal region. He believed pubic lice to be present at the time but could never find them. He tried strong mercurial ointment, and within a day or so this medication had ‘driven them all over the body’” (Wilson and Miller 1946: 52).

There also appears to be some connection between patients suffering from a condition called syphilophobia and DOP. “Syphilophobia is a psychiatric symptom which may accompany or precede all stages of mental illness, and is analogous in all features to the delusion of parasitosis” (Macalpine 1957: 99). For unclear reasons, Wilson (1952) categorizes DOP with syphilophobia. Self-treatment with mercurial ointment is a possibility.

Cosmetics

Some early cosmetics had mercury as a key ingredient. A dated source itself states,  “Despite the fact that topical mercury preparations were condemned as both useless and dangerous almost twenty years ago, these creams are apparently still available” (Oliveira et. al. 1987: 304). For unknown reasons, mercurial skin creams are still widely in use throughout Africa, SE Asia, many Arabic speaking countries, and Mexico (see related research under search of “mercury skin cream” on Pubmed.gov).

Cases 5 and 6 presented by Wilson and Miller in addition to having DOP symptoms had vitigo (irregular pigmentation likely treated with mercurial, skin-whitening cream) (1946:47). Documented commonalities between cases states, “’bugs’ may come out of such common household items as toothpaste, petroleum jelly, or cosmetics” (Schrut and Waldron 1963: 429). Also noteworthy is, “The typical patient with delusion of parasitosis is a woman over 40 (the condition is three times as common in women)” (Br. Med. J. 1977: 790); this pattern could relate to prolonged use of cosmetics.

In a large scale study of dermal effects of skin whitening creams, “of the 368 women questioned…main skin complaints included dermatophyte infections (n= 105) and scabies (n= 69)” (Mahe’ et. al. 2003). Another study of a condition found in Nigerian patients called “Ode Ori” is described as, “crawling sensations in the head and body, noises in the ears, palpitations and various other somatic complaints” (Makanjuola 1987). Similarly, Ebigbo presents “heat in the body and head; crawling, heavy and biting sensations” found in Nigeria (Ebigbo 1993:396- 401).

Mercurial skin creams are still in use in Mexico (also in US border states. See CDC study  “Update: Mercury Poisoning Associated with Beauty Cream – AZ, CA, NM and Texas” 1996). The US distribution map of Morgellons Disease (which is widely accepted by the medical community as the same as DOP) on Morgellons.org shows higher concentrations in US/ Mexico Border States.

Discussion- I am not a qualified medical researcher nor am I objective in presenting such information as connections between mercury and DOP symptoms (see documentation of my recovery from related symptoms in “Hell and Back Again” Keleher 2008). None the less, I cannot help seeing connections and possible connections throughout the medical research on the symptoms set labeled DOP (and other times Morgellons Disease) and mercury. Certainly, some of the connections in this paper as well as an earlier paper (see Keleher 2008) are speculative. My background as a researcher is in the admittedly soft science of archaeology. My hope in presenting this and other information is that a qualified medical professional (or professionals) will further the investigation.

Sources:

Center for Disease Control and Prevention, "Mercury Poisoning Associated With Beauty Cream- AZ, CA, NM and Texas 1996." MMWR Morb. Mortal Weekly Report 45, no. 1 (1996): 633-5.

"Delusions of Parasitosis." British Medical Journal 26, no. 1 (1977): 790-791.

Keleher, Joseph W.. "Hell and back Again: An Account of Morgellons Disease and Its Cure From a Former Sufferer." Explore! 17, no. 4 ( August 2008):

Keleher, Joseph W.. "Patterns in Early Morgellons Disease Considered as Effect of Mercury Exposure." Explore! 17,  no. 6 (December 2008):

Mahe’, A, Ly F, Aymaid G and Dangou JM. "Skin Diseases Associated With the Cosmetic Use of Bleaching Products in Women From Dakar, Senegal." British Journal of Dermatology 148, no. 3 (March, 2003): 493-500.

Makanjuola, RO. ""’Ode Ori’ A Cultural-Bound Disorder with Prominent Somantic Features in Yoruba Nigerian Patients." Acta. Psychiatric Scandinavia 75, no. 3 (1987): 231-6.

Macalpine, Ida. "Syphilophobia: A Psychiatric Study." British Journal of Venereal Disease 33, no. (1957): 92.

http://www.morgellons.org Internet: accessed 27 October 2009
http://www.pubmed.gov Internet: accessed 31..October 2009.

Schrut, Albert H., MD and William G. Waldron. "Psychiatric and Entomological Aspects of Delusory Parasitosis." Journal of the American Medical Association 186 (1963): 429-430.
Sneddon, I. B.,. "The Mind and the Skin." British Medical Journal (March, 1949): 472-5.

Tilles, G. and D. Wallach. "The Treatment of Syphilis with Mercury: An Exemplary Therapeutic History." History of Science in Medicine 30, no. 4 (1996): 501- 510.

Wilson, J. Walter and Hiram E. Miller. "Delusions of Parasitosis." Archives of Dermatology and Syphilology 54, no. (1946):

What Makes a Disease Real?

By Robert H. Shmerling, M.D.
Beth Israel Deaconess Medical Center

 

Doctors can be a skeptical bunch. I have colleagues who flat out deny that a condition can be "real" unless they can observe it or detect it with a test.

Yet, many physicians deal with conditions all the time whose symptoms can’t be measured. For example:

  • Depression – A depressed person will usually have normal physical examinations, blood tests and, if necessary, a normal brain MRI.
  • Headaches – Most people who have headaches have normal test results.
  • Joint pain – People can have joint pain (arthralgia) without any joint inflammation (arthritis). The pain could be due to tendonitis, bursitis, vitamin D deficiency or thyroid disease. But often we can’t find any cause of the pain.

Doctors rarely do extensive testing for these conditions because abnormal results are rare and the tests are almost never helpful.

Millions of people are affected by diseases that have "subjective" symptoms and can’t be confirmed by observation or tests. These include fibromyalgia, most headaches (including migraine), irritable bowel syndrome. So, does this mean that these conditions aren’t "real?" They’re certainly real to the people suffering with them.

It’s All in Your Head

When a symptom can’t be explained, it doesn’t mean that it’s imaginary or due to a mental illness, psychiatric disorder or psychological distress. That’s what is implied when a doctor tells a patient, "It’s all in your head." At the very least, we should assume that the pain or unpleasant experience is real regardless of test results.

In the end, all pain is perceived by the brain. So, in a way, all pain is "all in your head." Yet there is a tendency to relegate unobservable symptoms to the realm of the psychiatrist. Never mind that a psychiatric disease is "real" even when imaging and blood test results are normal. If you’ve ever witnessed psychotic behavior or been with someone who is severely depressed, it is clearly real.

Unexplained symptoms could be due to a disease that hasn’t been detected yet. Ideally, doctors and patients should identify the cause if possible, rule out a dangerous condition, and treat the bothersome symptoms. And that’s true whether the symptom is measureable or not.

What’s in a Name?

We usually expect the doctor to make a diagnosis and recommend a treatment when we have a problem. It’s reassuring to know that your particular problem has a name. It means that other people have experienced it and that studies have assessed the effectiveness of various treatments.

Yet for many conditions, the name is only a label. It’s convenient to apply a name to a particular combination of symptoms, even though the cause is unknown and no clear-cut abnormalities can be found. Examples include fibromyalgia syndrome and irritable bowel syndrome. Assigning a name to symptoms can be reassuring but it does not make the condition more or less "real."

Focus on Improving Symptoms

There are times when even the smartest health care provider can’t come up with a logical, compelling or even reasonable explanation for a person’s symptoms. In those cases, it’s important not to get too focused on explaining or labeling them. Instead, the doctor should focus on:

  • Not missing some important clue
  • Treating the symptoms

In many fields of medicine, doctors spend all day improving symptoms rather than making a diagnosis. Headache specialists, for example, must be convinced there is no brain tumor, no meningitis, and no other serious and treatable cause of the pain. But once that happens, attention turns toward treatment rather than on sorting out a specific cause.

This can be frustrating for both patients and doctors. But until we understand the specific causes of common conditions like headaches, back pain, ringing in the ears (tinnitus) and chronic fatigue, controlling symptoms, not a name, is what will help the most.

The Bottom Line

Once again this shows that there’s more uncertainty in medicine than most people think. But that doesn’t mean a person is imagining their symptoms.

As I see it, debating the "realness" of symptoms is often a waste of time. Unless a person is deliberately "faking" symptoms (a rare event in most doctors’ practices), they are just as real as for those with an observable, measurable and testable condition.

Having names are nice, but they are not always helpful. All other things being equal, I’d rather have a nameless condition that’s well-treated than a definite, but untreatable diagnosis.

 

Robert H. Shmerling, M.D. is associate physician at Beth Israel Deaconess Medical Center and associate professor at Harvard Medical School. He has been a practicing rheumatologist for over 20 years at Beth Israel Deaconess Medical Center. He is an active teacher in the Internal Medicine Residency Program, serving as the Robinson Firm Chief. He is also a teacher in the Rheumatology Fellowship Program.

http://www.intelihealth.com/IH/ihtIH/W/35320/35323/1019194.html?d=dmtHMSContent

Morgellons – Fear, Anxiety, and Isolation

It was the summer of 2006, whether it was July or August I can no longer recall. What I do recall is the sheer terror I was experiencing. I was in the garage, sitting in a lawn chair and at the end of my rope. Tears were streaming down my face and I kept saying, “I don’t want to be here … I don’t want to be here …” over and over again. I was experiencing something so horrifying that even now I cannot convey it through words. I had an extreme fight or flight feeling, it was an unbearable feeling that I could no longer endure. Under my skin (I thought at the time)  were thousands of worms crawling, squirming, and biting me. It was painful, scary, and extremely unnerving. I was literally coming unglued.

Suddenly my wife came into the garage with the cordless phone, it was our pastor on the line. When she handed me the phone I couldn’t speak. I could only cry. My pastor kept saying “What is going on …” and each time I tried to speak I burst into tears, this went on for quite some time until I finally got it together enough to tell him I had what folks were calling Morgellons. He hadn’t heard about it. So I explained it and told him my body was absolutely infested with parasites (because that’s exactly what it felt like). Now he had been on mission trips and was not unfamiliar with parasites and had taken antiparasiticals himself in order to travel to certain areas. I was taking them too at the time (on my own which I DO NOT recommend). He told me he knew a doctor that I could see and then made me promise I wouldn’t do anything foolish (things were worse than I’m letting on here but I need to be sensitive to those who might be in that dark place right now). I felt extremely relieved, help was on the way. It was the first time I had told anyone other than my wife that I had what appeared to be Morgellons (and even she didn’t believe).

So much transpired before the events described above that I could write a book, strange things were happening to me. I had what appeared to be glitter pouring from my forehead. The glitter would cover my shirt and people would actually ask me about it at work (I could see it fall past my eyes as I worked). Tiny black gnats were around me constantly, and indoors at work. You cannot imagine the embarrassment. I am sure they were hatching out of me, in fact, I know they were. When I walked into the team meeting everyone immediately began to scratch their nose and face, it was instantaneous too as soon as I was in their line of site. I was afraid they would put things together and realize the reaction they were having was emanating from me. And there were other things too that I simply cannot mention as they are, quite frankly, to disturbing to recall. The mere suggestion that I caught this by reading an article on the internet is utterly ridiculous. I will be writing a follow up article that will destroy that argument on its face.

I went to see the doctor my pastor set me up with. He asked me the typical questions, “What countries have you traveled too …” and so on, you know the drill. By the time the appointment was over he asked me if it was okay if he could call my wife. I knew what he was thinking, “This guy is off his rocker” and I was at the time, at least in part. I fully admit that. I told him “No” and left. From that point on I knew I was on my own. What was happening to me was beyond imagining or believing to someone who wasn’t experiencing it.

Fear

If you Google “Mans top ten fears” you will find “Fear of Spiders” and “Fear of Disease” in the top ten which is an interesting perspective on human nature. What I was experiencing were both of these wrapped into one singular horror, only it wasn’t a phobia, it was a real physical “thing” occurring inside my body. I had what felt like bugs crawling under my skin, and sometimes, the movement felt like big things moving, as if there were worms several inches in length beneath my skin. I’m sure by this point in this blog post any doctor reading along has already made his or her decision that I’m either delusional, a drug addict, or simply plain old crazy. But none of these are the case. I am a software architect, a very good one, and the President of a successful software company to this very day.

I could barely function I was so frightened (at this point I hadn’t really become sick yet but that day was coming and is not covered in this post). Imagine the absurdity of my wife asking me what I wanted for dinner as I sat there feeling what appeared to be hundreds if not thousands of “things” crawling under my skin. I mean “How you can you talk about dinner? Do you know what the hell is happening to me!” Of course, I did not say that out-loud. No, instead it was representative of what was racing through my mind whenever anyone spoke to me. I have no idea how I managed to keep functioning professionally. What was happening to me overwhelmed my “normal” life and I found myself living another “secrete” life. A life I couldn’t (and still cannot) tell anyone about. And this “secrete” life was full of fear, but I had to maintain the illusion that everything was alright or else lose everything. Now, mix into this an incredible feeling of panic, of flight or fight, and the realization of knowing that no one was going to help me, not doctors, no one. The world that once made sense to me, that was fun and safe seemed to be slipping away. Not knowing exactly what it was that was causing the crawling, biting, and stinging I began to suspect anything and everything. Yes, when doctors see a Morgellons patient they (we) are messed up, fearful, half delusional, no doubt about it. However, this comes after Morgellons and is the effect, not the cause. It is a direct result of the horrifying experience we are thrust into.

To the typical Morgellons patient that has been dealing with this for a while the fear of parasites has probably worn off. You realize most of the world deals with them and suffers from them. It is really only here in North America where the very concept of parasitical infection is almost always denied outright. Amazing how this one continent is simply devoid of them. This even though the CDC states that 14% of pet owners are infected with their pet’s worms (and you know the real number is much higher because testing misses most parasites). Considering how many homes in America have pets (if the CDC statement is correct) then we are talking tens of millions of people in America alone infected with their pet’s worms (but I digress). I am not saying Morgellons is worms by any means, only that it often feels like it and it’s dismissed outright even though this is fairly common in the most of the world, including our own as it would appear according to the CDC. Who is going through life with blinders on, me or the doctor? But don’t let me frighten you. I am only saying this because given the statements from the CDC above and the fact that it “feels” like we have worms the refusal to even examine us is well, negligent at best.

Anxiety

It’s hard to separate anxiety from fear but if you suffer from anxiety (and I didn’t before Morgellons) you know the difference between fear and anxiety. Since I was on my own I did what most in my situation would do, I started looking for answers. I researched and posted on forums. The forums were good from a support perspective but also bad in many ways. People love to post every new scary parasite article, ponder every horrible thing this could be, post conspiracies about population control, and intentional infection. They like to share horrifying photo’s of things coughed up, pulled out, or dug out of a stool sample, everywhere is some bizarre parasite (or so it is said). Also, sometimes dangerous things are suggested as protocols, and I did some things I really regret, things that could have really hurt me. Now, before you get mad at me, I also did those all of those things at times, I was right there in the thick of it all. I am condemning no one. We are on our own having been kicked to the curb by the enlightened ones.

All of the above can lead to extreme anxiety and fear (which will deplete you of Magnesium and minerals your body needs). Some boards are safer than others however. If you find yourself hitting a forum in an almost addictive fashion and yet you hate doing so because it fills you with fear then you probably need to stop surfing that or those forums. It’s more important to heal than to find the cause. Instead pour your energy into getting better rather than reading technical documents you barely comprehend.

Isolation

Unlike a cancer patient who is diagnosed, offered a range of treatment options, and then surrounded by compassionate, lovinig family members we are mocked and abandoned, not only by the medical community but often by our family members. I have a wife and 3 children, had I been alone things would have been so much harder. However, this caused a ton of angst between my wife and I at one point. If you live alone my prayers are with you, I know it must be terribly difficult for you.

Because of my contacts with certain folks I receive letters and emails from sufferers from time to time, they are heart breaking, sometimes scary, and make me realize how in the midst of all this I am very lucky. Others have and do suffer far worse than I ever did or have. They are often totally alone, unable to comprehend what is happening to them, without health care, single mothers adrift with no one to help, abandoned by their families, some have even walked away from homes sure that they were so infested they had no other choice. Finally, many have been treated most wretchedly by doctors they turned to for help. Many a times I have ducked down in cube and wept upon reading them, and at times, I have had to leave work and sit in my car in the parking lot to regather myself. A few of you know what I am talking about and have seen those letters. There are many working silently behind the scenes that you never hear about, I just feel it’s important to let you know about such things because it’s comforting to those suffering.  All I do is write about things, others are in the trenches, actually doing things, offering their time and energy, like Trisha Springstead and many, many others.

For every one of us here reading this there are a thousand out there right now who cannot get a handle on what is happening to them, and that is probably an understatement. Many will lose their homes and every dime they have to their name before this is all over. You have all read such stories.

The Battle for your Mind

If you suffer from this then you know there is something almost unholy, menacing, and terrorizing about Morgellons. To top it off we get to go through the experience scorned and alone. You might end up labeled DOP or worse. What the doctors refuse to realize is what Amelia summed up so well in her response to the Psychiatric Times.

From a psychiatric standpoint, it is inappropriate to use the term “psychological aberrations” instead of a specific psychiatric diagnosis or condition.  Next, the allegation that the patients “drift” from one physician to another implies a judgment on the nature of the quest to find a health professional who is committed to finding relief for the patient’s suffering.

Such patients are further maligned for waiting until they present as “an emergency” (sic).  If a patient is repeatedly turned away by one practitioner after another, it is understandable that they might be reluctant to seek help until the condition is perceived as an emergency.

By the time we get into a doctors office we are extremely upset, stressed out, anxious, fearful, and maybe even partially over the rainbow. This is quite understandable and I say a completely natural response given the experience. It’s astounding that doctors cannot understand this basic human reaction to such a horrible situation.

The fear that mounts up and rides side by side with Morgellons can in fact be worse than Morgellons itself.

Deciding to Control What You Let Your Mind Dwell Upon

At times, fear is going to wash over you like a wave, you might even be gripped by it right now, unable to escape its grasp. Fear still sweeps over me even now at times. It is extremely important to your recovery that you begin to overcome this fear. You might find that counseling or psychiatry helps and should feel no shame for seeking such help. For me, I simply fight the battle in my mind each day when presented with the choice to panic or stay rational.

When the crawlies hit me I can panic and start thinking about what horrible thing this crawling sensation might be or I can simply choose not to entertain such thoughts. I can control Morgellons with my protocol for the most part but if I let my mind run wild with speculation and again become obsessive about finding the root cause, wasting every waking hour on the hunt, I know I will get worse. The stress, fear, and anxiety alone will ensure that things begin to go downhill for me again.

You can push so hard and freak out so bad that you can end up like Gillian Penkethman in this article and be involuntarily committed. I have corresponded to people that have been locked away and there have been some mothers on forums who have had their children taken away. If you need medical help by all means seek it, but be calm. I never mentioned the word Morgellons after that doctors visit mentioned above. After that I merely talked symptoms.

The other day I watched a video of a person holding a lint roller up to a thread that was coming off her couch, and the thread (which was a frayed thread the from the couch) was attacking the lint roller (as it was stated). And then several folks chimed in stating to stay away from it and such. Now, I’m not trying to be cruel here, believe me, I was over the edge at the onset of Morgellons. But clearly in that video the thread was attracted to the lint roller by nothing more than mere static electricity, it was painfully obvious. Don’t let yourself get into that mindset where you are obsessively examining every thread, fiber, and spec and seeing the boogie man where there is none. I realize that sounds condescending but I’m merely relaying what has proven to be so important in my feeling better. If you are spiraling down that path it’s time to pull up.

So what is your Decision?

Start today letting go of Morgellons and begin to reclaim your life back, laugh, have fun, don’t be afraid of the outside. Sure, if you’re a sufferer you have it, but you aren’t controlled by it unless that is you choose to be. Each and every day you need to resist the fear until you reach the place where you are no longer temped to “stay in wonderland and see how deep the rabbit hole goes …” I am in no way making light of Morgellons, it is a serious physical problem and very real.

There is so much left unsaid here, we will touch on this topic much more in the future. If you are a family member helping those with this condition hopefully you have gained some insight into what your family member or friend might be going through.

Mr. Common Sense