“patients’ symptoms are often dismissed as psychological by health care practitioners”
Morgellons Research Foundation web site

 

“Physical and neurological symptoms are often dismissed or ignored”
Oklahoma State University Center for Health Sciences Center for the Investigation of Morgellons Disease

The above statements are representative of something that is often repeated regarding Morgellons, in that the patients are somehow being ignored, or dismissed. Particularly that their symptoms are being dismissed as “psychological”.

This conjures up various scenarios, of various plausibility for each of the Morgellons symptoms:

Patient: Doctor, I’ve got this horrible itching sensation, it keeps me awake at night, it feels like bugs crawling under my skin.
Doctor: You’re just imagining it.

Patient: Doctor, I’ve got these nasty looking sores on my arms
Doctor: You’re just imagining them

Patient: Doctor, I feel tired all the time.
Doctor: You’re just imagining it.

Patient: Doctor, I found some fibers on my skin, some were in the sore I showed you.
Doctor: You’re just imagining it.

Patient: Doctor, I saw a cobalt blue fiber poking out of the scalp, I tried to pull it out, but it withdrew back into the scalp and reappeared a few moments later in another area
Doctor: Sounds unlikely.

Of these, only the last is something that is likely going to be “dismissed as psychological”. The “finding of fibers on the skin” is not going to be dismissed as psychological, since fibers are everywhere, and everyone has them on their skin.

The root symptoms for many people who identify as having Morgellons are itching and crawling sensations. This causes people to scratch and pick at their skin, hence producing sores. The itching causes sleep deprivation, which might lead to fatigue and confusion.

So, under what circumstances would a doctor dismiss itching as “purely psychological”? Suppose you went to the doctor, and told him: “Doctor, I’m itching really bad, feels like bugs crawling under my skin”. How quickly would the doctor say “you are just imagining it”?

Consider for a second all the causes of itching, if we go to http://www.wrongdiagnosis.com/symptoms/itching_skin/causes.htm, you’ll see there are 646 disease that have itching as a symptom. Not only that, but there are 1742 medications that cause itching skin. Given this vast array of possible causes, obviously a doctor is not going to dismiss every report of itching as being “purely psychological”.

But here our patent said “it feels like bugs crawling under my skin”. Would a doctor automatically dismiss this? No. This sensation is generally either an actual infestation of bugs, like scabies, or it’s “formication“, which is a well known symptom of many physical conditions including diabetes and menopause.

So what would the doctor dismiss as purely psychological? Well, suppose the patient had actually said “I think I’ve got bugs crawling under my skin”. The doctor would look at their skin, and if there were no scabies they would explain that this is formication, and then go on to look for possible causes. At this stage there is no dismissing.

Suppose that no scabies are found, formication is explained, and the patient still continues to say “I believe I have bugs under my skin”, then at this stage, the doctor might begin to suspect that the patient is delusional.

So what is the doctor actually dismissing? They are dismissing the delusion as purely psychological. The thing that is psychological is the fixed false belief that their crawling and biting sensations are caused by parasites under their skin. This does not mean that the crawling and biting sensations are psychological.

That’s important, so I’m going to repeat it.

Just because a patient holds a false belief regarding the cause their itching, biting and crawling sensations, this does not mean their itching biting and crawling sensations are “purely psychological”. The only thing that is in any sense “purely psychological” is their false belief about the cause of those sensations.

If I have headaches, but I attribute those headaches to FBI mind control rays, then this does not mean that my headaches are purely psychological. It just means I hold a delusional belief about the cause of those headaches.

So, yes, delusions are psychological. If a patient thinks that living fibers are burrowing into his eyeballs, then that’s probably psychological. But even here, doctors do not “dismiss”. A delusion can be quite a serious problem. It’s hardly something to brush aside. But at the same time, it’s very difficult to discuss with the patient. For the patient, if you question their delusion, you are questioning the whole basis of their illness. To these patients, it might feel like you are “dismissing their symptoms as psychological”, when in fact you are simply noting that they have one delusional belief regarding their real physical symptoms.

The MRF and the OSU-CHS-CIMD exist to raise public awareness of Morgellons and to raise funds. So it suits their purposes to claim that patients are having their physical symptoms dismissed. But it’s ultimately disingenuous, as doctors do NOT dismiss physical symptoms. They don’t even dismiss psychological symptoms. But some patients hold delusional beliefs regarding the causes of their physical symptoms. They then claim that, since the doctor tried to explain that this was a delusion (and perhaps treat it), then their physical symptoms were being dismissed as psychological.

In reality, the only symptoms that were being “dismissed” as psychological, were the psychological symptoms.

66 Responses to “Dismissed as Psychological”

  1. Furthermore, when people say they are “dismissed” because they are diagnosed with a mental health concern is particularly troubling. To minimalize a mental health diagnosis by calling it a “dismissal” is in itself a dismissal of the tremendous effects a mental health condition can have on one’s life.

  2. give me a break sarah. again, even if some display signs of mental illness it does not mean their physical symptoms have been properly addressed. it is widely known that parasitic infection can cause many forms of mental illness, so to not not acknowledge that possability and test for such is being dismissed by health care practioners who are not trained to make such diagnoises. again, we did not establish the protocol for dx-ing dop, doctors did. not following this standard before dismissing us is neglegent and will come back to haunt many, you included, i hope. please stop embarrassing the university of ga by acting like you got a half assed education. if thats the best you can do then just put a sock in it. how bout those broncos? surprised some people didn’t they. and to top it off, parkview goes down in flames.

  3. ppy, the issue is if physical symptoms are being incorrectly labeled as psychological symptoms. That’s different from mental illness that is caused by parasitic infections.

    Do you think your symptoms of mental illness are caused by parasites? Do you have physical symptoms that have been “dismissed”?

  4. On a related note, I found this article,

    which says:

    http://serendip.brynmawr.edu/biology/b103/f03/web3/b1pladek.html

    doctors have, for a long time, dismissed hypochondria as “all in the head.”

    Which is interesting. Perhaps though this illustrates a point. Just because mental illness has a physical cause, does not make it not a “mental” illness. Mental illness does not imply “purely psychological”. Yes, there can be lots of physical causes of mental illness. See:

    http://www.webmd.com/anxiety-panic/mental-health-causes-mental-illness

  5. I’m not very familiar with this site, but I honestly wish this was just DOP and can take a pill. I am selfish in the fact that I do not want my previously perfect family to be offensive, weird or patient zeros…I’m just too social and connected to want to belong to this “club.”

    Also, if Michael and London were DOP, what helped you get over it. Shouldn’t all the delusionals get relief on the same meds as you? My NP therapist has told me from the get go that I do NOT have any mental illness and the Park Ave top Psychiatrist said meds would NOT alleviate any fog or lethargy or depression – maybe shock treatment would work for you….

    I decided, “No thanks,” and moved to FL and after delivering 2 babies in 2 years, I felt fine with coffee and exercise which was always my “fix” until 1/6/07 when all heck broke loose.

    I felt I was in an Asteroid game and I just got on the plane after 3 wks at dad’s farm in VERY rural western NY (amish and 10,000 acre dairy and steer farmer are his neighbors) and headed to the pet aisle at Walmart at 10pm after getting off the plane with 2 little ones who had school and an 8 pm bedtime.

    I hope I just have DOP and whatever meds you’re taking cure me too:)

    Maybe you’re right and everyone else is wrong including IgeneX and Quest and Labcorp. I really hope and pray that you are the one in the right!!

  6. nice try michael. i don’t have a mental illness but i do have a parasitic infection which i believe is responsible for the lesions found on my brain as well as other impairments of my brain function. and yes these findings have been largely ignored by my infectious disease doctor, though a neurologist recommended a spinal tap done with floursecence and an x rays my back problems made a normal spinal tap impossible. too bad they didn’t figure that out before i had a needle shoved into my spine for over an hour. good times and fun! the reason i feel my symptoms are being dismissed is because my id doctor wants to take a wait and see approach to my neuro problems…… so i guess if i go in drooling and unable to control communicate he may want to investigate further? wow, i feel confident that i am in good hands. also michael, parasitic infections cause many physical symptoms that are being diagnosed as psychological in nature, for example the lesions that are being diagnosed as self inflicted. why do you people portray yourselves as experts if you fail to make logical conclusions about comments made. it’s not hard to conclude that lesions are a physical symptom in appearance. so to diagnosis them as a sign of psychological problem is fairly asinine without following the Established Protocol. keep talkin, y’all just look more and more ridiculous

  7. melissa,
    no sweetie, they are right. they all have medical degrees and lab test that negate any test we can ever possibly produce. can’t you tell by their logical arguements and vast amounts of scientific evidence? i mean if ” because i said so” isn’t enough for you, look at all the derms they quote who have never done research in this arens. spouting off the party line because it’s in medical literature dating back to the 1940s should convine anybody. don’t bother arguing with em. it only makes them look stupid

  8. ppy said:

    it’s not hard to conclude that lesions are a physical symptom in appearance. so to diagnosis them as a sign of psychological problem is fairly asinine without following the Established Protocol

    Even the MRF has said all along that some of the lesions are self generated (i.e, the patients scratch themselves until they have open sores). They even call them “picking” excoriations. (see #3 here)

    But really what I’m talking about is the claim that the doctors dismiss the itching as psychological. Even if the patient made their own sores, they did it because they felt a sensation, itching or formication, and the MRF says this is being “dismissed”.

    I didn’t say you had mental illness. I said you had symptoms of mental illness, which seemed to be the point you were making.

  9. Ppy, if someone doesn’t agree to go along with a “morgellons disease patient” and allow them to remain deep inside their incorrect beliefs, is that the equivalent of “ignoring” and “abandoning” them?

  10. I think being told one has a mental health condition is not being dismissed at all. It’s particularly troubling and should be investigated with the same vigor as a physical condition. Unfortunately, it’s not, as many people will do almost anything to distance themselves and deny they have a mental health condition because of the stigma.

    Also, it is commonly reported that feeling “foggy” in your head and lethargic are symptoms of depression (psychomotor retardation). Depression, of course, does not account for everyone’s feelings of lethargy and fogginess, but as depression is a serious condition that is the most common mental health condition associated with suicide, it should be take very, very seriously.

  11. The issue is that Morgellons patients are offered a psychological dx after being denied any tests that might invalidate that dx, since a DOP dx
    is a diagnosis of exclusion. In reality, a patient with morgellons
    asking their mainstream infectious disease doctor for tests related to morgellons pathology are always refused. Specifically:
    1) lyme disease
    2) chlamydia pneumoniae
    3) HHV-6
    4) EBV
    5) Mycoplamsa panel
    6) Immune system testing, in particular IgA, IgM, IgG, IgE, IgG subclassses 1-4, CD57/NK1

    In my case, numerous Kaiser infectious disease doctors refused to
    even run those tests. Fortunately, my LLMD who treats a number of morgellons patiens, did run the tests. They all came back positive,
    some very strongly so.

    So that’s just one datapoint. These “psych dx’s” are happening
    inappropriately (net.research showed the same kaiser ID idiots had similarly put other morgellons patients on prozac — totally ineffective — and yet they all had all of the above infections, and they were uniformly
    denied getting these tests in the first place. The doctors were
    very quick with their “DOP” prejudice against Morgellons, and
    as such misdiagnosed numerous patients w/o running tests.

    This is par for the course with Morgellons. Furthermore, psychological
    diagnoses need to come from people trained in the subject, not
    dermatologists or infectious disease doctors looking for a way to
    “blow off” doing the hard work they’re trained to do — proper diagnosis.

    Also, should a “psych dx” be appropriate, it’s a secondary effect
    of the infection itself. That in and of itself is a major act of malpractice,
    missing the primary cause of disease, and treating the symptom as if
    it is the cause of the disease.

    Dr. Harvey has some wise words to say regarding this psychological
    misdiagnosis of a parasitic infection (see http://nielsmayer.com/roller/NielsMayer/entry/morgellons_discovery_cure )
    “FYI, this phenomenon in NOT chronic Lyme disease, it’s not Chronic Fatigue Syndrome, and we are now certain it is NOT Delusions of
    Parasitosis. The latter in fact, will be the thrust of the paper: the DOP label has resulted in inappropriate and incomplete treatment of countless people who never recovered. Once the final DNA sequencing is done and the paper completed, it will be published with treatment protocol(s) for all clinicians world wide to use. Meanwhile, as both primary organisms create brain limbic system abnormalities, we now understand that the delusional component of the illness is real in many affected (but far from all), so correct psychotropic medication can help that component even if treated purely independently. Nearly half the Morgellons are bipolar, but became so AFTER the parasite infection began. Others have formal diagnoses of extreme OCD or ADD/ADHD. The prevalence in children is no different from adults, and there appear to be no gender or race differences.”

  12. Harvey is saying that some Morgellons patients have delusions, and that they can be treated independently of other physical symptoms. Here Harvey seems to be siding with the Kaiser doctors who prescribed Prozac. Sure, he thinks it’s caused by a parasite, but the end result is the same.

    Regarding your tests, what about them says you have “Morgellons”? It just sounds like you have a few specific infections. How do you make the leap from: “I have Lyme, chlamydia pneumoniae, HHV-6 and EBV” to “I have Morgellons”?

  13. http://video.google.com/videoplay?docid=-5980990221766439646

    Now we know who funds this site.
    Everyone please understand that this film is all about Morgellons.
    That is why this site is up and running trying to say it does not exist.
    Veil is dropped.

  14. Part I

    I want to point out some things from the MRF’s current case definition page:

    Although the initial attention of the MRF focused on filaments and movement, awareness of the other symptoms increased which broadened the presumed boundaries of the illness. This illuminated the possible degree of disability of those afflicted and made clear that Morgellons disease likely extended far beyond the “filaments” and dermal movement sensations, to include numerous other organ system effects.

    It’s wrong to lie to vulnerable people (especially ones with DOP), reinforcing their beliefs that the sensations and superficial crud in their skin means anything. The fact that the causes of DOP have been long known to be organic as well as psychological, can not, and will not, ever, change. Sure, patients who developed it from an underlying physical illness have systemic problems.

    The first attempt to pool and characterize Morgellons data into a consistent pattern was made by a physician member of the MRF who evaluated information collected from fifty people who self-referred from the MRF site to a single medical clinic.

    Bottom line? It’s dangerously unwise to ignore good doctors’ diagnoses.

    The MRF claims, in their “Morgellons Disease Characterization”:

    The Following Signs or Symptoms are The Basis of Morgellons Disease as defined by patients that fit within a consistent boundary that is also outside the boundary of other “known” diseases.

    What is a Symptom?

    Any subjective evidence of disease. A symptom is a phenomenon that is experienced by an individual.

    What is a Sign?

    Any objective evidence of disease. A sign can be detected by a person other than the affected individual.

    Most people don’t self-diagnose and go into a doctor saying, “Doc, here’s what I have, and you need to perform such and such tests on me”, but there have always been members of our society who DO do this, and they’ve existed since long before anyone ever heard of “chronic lyme” or “morgellons disease”. I think these types of patients differ, significantly, from a patient suffering from delusions of parasitosis.

    Okay, that being said, I think there are countless misunderstandings existing among the patients in the “chronic lyme” and “morgellons disease” groups. Complementary medicine holds a very legitimate place in society, and, maybe, even alternative medicine for a few certain types of people.

    In my opinion, the chronic lyme & morgellons’ doctors & researchers heavily influence and use people who are unable to take care of themselves, whatever the cause. Because of them, these patients are at a heightened risk, as well as the rest of society.

  15. Part II

    Conventional medicine provides the best treatment for the various disorders that the MRF claims here, about “morgellons disease patients”…

    COMMON LABORATORY ABNORMALITIES

    Elevated cytokines: TNF-alpha, IL-6, TGF-beta; elevated inflammation markers: C-reactive protein and TNF-alpha; Immunodeficiency markers: low CD 56 or CD 57 number, low C1Q, low IgG subclasses 1 and 3; hematological abnormalities: low hemoglobin and hematocrit with abnormal RBC indices; and biochemical abnormalities: elevated blood glucose, insulin, calcium, and serum Homocysteine, and low serum potassium and magnesium.

    There is a lot of information to be found on all of that stuff, and I’d normally not be concerned with knowing about any of it. As far as I could tell, a lot of the sources I’ve reviewed have said the same basic things, but I’d appreciate additions and corrections to anything I may have been negligent in. I don’t get offended easily, and it’s not my intention to write a book on this, but people should have clues as to what’s REALLY wrong with them, or, at least, maybe someone who cares about somebody who’s caught up inside of this trap can see this and get more straight on the fact that “morgellons disease” is not what’s ailing anybody.

    Elevated cytokines:

    Cytokines are involved in a variety of immunological, inflammatory and infectious diseases. Increased cytokines are capable of inducing symptoms of fatigue, anorexia, weight loss, sleep disturbance, loss of libido, memory problems, and anhedonia (inability to gain pleasure from enjoyable experiences). This behavioral change has been referred to as “sickness behavior” and has an obvious overlap with symptoms of major depression.

    The emerging data on the importance of inflammatory processes in mental illness provide a more complete, albeit much more complex, understanding of potential pathophysiologic processes involved. A whole area of therapeutics not directly involving neurotransmitters is becoming possible. (Which should make many of those who hate psychotopics very happy.)

    TNF-alpha

    TNF causes apoptotic cell death, cellular proliferation, differentiation, inflammation, tumorigenesis, and viral replication. It’s primary role is in the regulation of immune cells. Dysregulation and, in particular, the overproduction of TNF have been implicated in a variety of human diseases, as well as cancer.

    IL-6

    Like TNF, Interleukin-6 is elevated in a variety of inflammatory diseases both autoimmune and infectious. The highest levels are seen in patients with sepsis. Like C-reactive protein, IL-6 can also be elevated in a variety of conditions including in people who are obese, people who are sedentary, people who have insulin resistance, high cardiovascular risk, and osteoporosis.

    TGF-beta is intimately involved in physiologic tissue repair and immune regulation. Aberrant Transforming Growth Factor-beta signaling is associated with fibrosis and other pathological conditions

    Elevated Inflammation Markers:

    C-reactive protein

    CRP is a general marker of infection and inflammation that alerts medical professionals that further testing and treatment may be necessary. It is helpful in evaluating conditions such as rheumatoid arthritis and lupus. CRP also is used to monitor wound healing and to monitor patients who have surgical incisions, organ transplants, or burns as an early detection system for possible infections.

    A positive test means you have inflammation in the body, and may be due to a variety of different conditions, including:

    * Cancer
    * Connective tissue disease
    * Heart attack
    * Infection
    * Inflammatory bowel disease (IBS)
    * Lupus
    * Pneumococcal pneumonia
    * Rheumatoid arthritis
    * Rheumatic fever
    * Tuberculosis

    Positive CRP results also occur with the use of birth control pills.

    Immunodeficiency Markers:

    Low CD 56 or CD 57

    I’m sorry, I’m not motivated to even try learning about all of the implications, or the significance, of these markers being low. It’s too time consuming, and, like everything, these particular markers being low can mean lots of things. I think maybe CD56 even decreases as we age (as our immunity, in general, does, after all). Somebody skilled in explaining Raphael Stricker’s NK Panel CD-57 for chronic lyme disease (ahem) is free to take over on this one.

    Low C1Q

    C1q deficiency may be hereditary or acquired. Hereditary deficiencies are usually complete and are transmitted as an autosomal recessive trait. Over 90% of patients with C1q deficiency have systemic lupus erythematosus (SLE). Low levels of C1q also are found in persons with SLE-like syndrome without typical serology, hypocomplementemic urticarial vasculitis syndrome, multiple myeloma, hypogammaglobulinemia, and membranoproliferative glomerulonephritis.

    Low IgG Subclasses 1 and 3

    IgG3 deficiency is associated with recurrent upper and lower respiratory tract infections and may occur in combination with IgG1 deficiency. IgG3 may be very important in the primary response to viral respiratory agents. Also, IgG3 is the predominant antibody response to an organism frequently isolated in chronic sinusitis patients.

    The natural history of IgG subclass deficiency is inconsistent. IgG subclass deficiency occurs in families with *Common Variable Immunodeficiency (CVI), and is probably more common in the U.S. than isolated IgG deficiency. IgG subclass deficiencies varies according to geographic area, too. Some patients improve without treatment, and some do well with prophylactic antibiotics. Patients who begin therapy with intravenous immune globulin will improve within the first 2 months of treatment, but a full 6-month trial is warranted in those with severe recurrent infections unresponsive to antibiotics. *Common Variable Immunodeficiency happens to be commonly associated with manifestations of autoimmune diseases (eg, systemic lupus erythematosus, rheumatoid arthritis, hemolytic anemia, pernicious anemia) and with leukemia and lymphoma.

    Hemotological Abnormalities:

    Low hemoglobin and hematocrit with abnormal RBC indices and biochemical abnormalities

    Low hemoglobin:

    Below-normal hemoglobin levels may lead to anemia that can be the result of:

    * iron deficiency or deficiencies in essential vitamins of other elements, such as B12, folate, B6,
    * inherited hemoglobin defects, such as sickle cell anemia or thalassemias,
    * other inherited defects affecting the red blood cells,
    * cirrhosis of the liver (during which the liver becomes scarred),
    * excessive bleeding,
    * excessive destruction of red blood cells,
    * kidney disease,
    * other chronic illnesses,
    * bone marrow failure or aplastic anemia, or
    * cancers that affect the bone marrow.

    Low hematocrit:

    CAUSES: anemia, vitamin or mineral deficiencies, recent bleeding, cirrhosis of the liver, and malignancies

    Elevated blood glucose

    CAUSES: Diabetes, Acromegaly, Acute stress (response to trauma, heart attack, and stroke for instance), Chronic renal failure, Cushing syndrome, Drugs, including: corticosteroids, tricyclic antidepressants, diuretics, epinephrine, estrogens (birth control pills and hormone replacement), lithium, phenytoin (Dilantin), salicylates, Excessive food intake, Hyperthyroidism, Pancreatic cancer, Pancreatitis

    And, I’ve read that increases in blood glucose levels raises macrophage production of IL-6, TNF and insulin

    Elevated insulin

    CAUSES: Acromegaly, Cushing’s Syndrome, Drugs such as corticosteroids, levodopa, oral contraceptives, Fructose or galactose intolerance, Insulinomas, Obesity, Insulin resistance, such as appears in type 2 diabetes and metabolic syndrome

    Elevated calcium

    CAUSES: Hyperparathyroidism, Cancer, Hyperthyroidism, Sarcoidosis, Tuberculosis, Prolonged immobilization, Excess Vitamin D intake, Kidney transplant

    Elevated serum homocysteine

    CAUSES: atherosclerosis, pernicious anemia, folate deficiency

    Homocysteine levels can increase with age, when a patient smokes, and with the use of drugs such as carbamazepine, methotrexate, and phenytoin

    Pernicious anemia is associated with autoimmune disorders. A coexistent history of autoimmune disorders such as thyroid disorders, type I diabetes, Addison disease, hypoparathyroidism, or autoimmune hemolytic anemia suggests the possibility of pernicious anemia

    Early neurological symptoms include paresthesias in the feet and fingers, poor gait, and memory loss. At later stages, patients can have severe disturbances in gait, loss of position sense, blindness due to optic atrophy, and psychiatric disturbances. In some patients, neurological impairment can occur without anemia. Therefore, neurological symptoms may range from mild to severe, and cobalamin deficiency should be considered even with minimal neurological symptoms and the absence of anemia.

    Low serum potassium

    Decreased levels of potassium indicate hypokalemia. Decreased levels may occur in a number of conditions, particularly:

    * dehydration,
    * vomiting,
    * diarrhea, and
    * deficient potassium intake (rare).

    In diabetes, your potassium may fall after you take insulin, particularly if your diabetes had been out of control for a while. Low potassium is commonly due to “water pills” (diuretics).

    Low magnesium

    Low levels of magnesium (hypomagnesemia) in your blood may mean that you are: 1) not getting enough magnesium in your diet; 2) your intestines are not absorbing enough magnesium; or 3) your kidneys are excreting too much magnesium. Deficiencies may be due to:

    * Low dietary intake (seen in the elderly, malnourished, and with alcoholism)
    * Gastrointestinal disorders (such as Crohn’s disease)
    * Uncontrolled diabetes
    * Hypoparathyroidism (underactive parathyroid gland)
    * Long-term diuretic use
    * Prolonged diarrhea
    * Post surgery
    * Severe burns
    * Toxemia of pregnancy

    Any of these serious illnesses can trigger a state of delusional parasitosis. People shouldn’t go to dermatologists over serious illnesses evoking a response in their skin, and in their minds. These particular patients need general practitioners and combined specialists to treat their ill states of health, not LLMD quacks selling them a line of bullshit.

  16. Thank you for fixing those things, MG, and I’m so sorry for taking up all that space. I have read some more stuff about those clusters of differentiation, and changed my mind about what I’d guessed, earlier, about the possible decrease of CD 56 with the aging process. (Oops!) I think both CD 56 and CD 57 can often indicate a particularly bad type of neuroendocrine situation, but, I don’t know.

    Anyone who wants to see CD Markers CD50 to CD99, can look here:

    http://www.pathologyoutlines.com/cd5099.html#CD56

  17. so lets all call for the complete testing protocol to be used to screen morgellons patients. that should solve the issue of if the proper dx is being given or if doctors are just being lazy and judgemental. what have you got to lose by advocating for the protocol to be followed before dop is brought into the picture? y’all are confident enough in your position that this shouldn’t be a big issue right? so stand with us in calling for this action as it could help prove your point or maybe it might just prove ours. scared? what say the peanut gallery?

  18. Ppy, you’ve already stated brain lesions as the cause behind your inability to reason, personality change, or whatever you have been experiencing that is new, and unlike your former self. Everyone who thinks that they have “morgellons disease” also has a definitive cause, or even multiple ones, which have interfered with their executive functionings.

    Nobody here can do anything to make anyone, like that, go back and change what “morgellons disease patients” have done, which is exactly what DOP patients do. It’s just that DOP patients have never had the internet, before, in the past, to carry on like this. It’s bad, it’s beyond bad, because nobody can move forward and work through their illness(es).

    Obsessing over insignifcant superficial debris, fearing the worst of fears, and experiencing all of those commonly shared feelings of whatever-it-is that, apparently, all “morgellons disease patients” go through when they refuse-to-follow “the proper protocol” has been the uniting force in the patient movement you belong to.

    All anyone needs to do is treat what they have, but patients, like all of you who think like this, need social supports.

  19. It isn’t reasonable that a doctor should conduct every test there is, in order to rule out parasites, when the things the Morgie says, and their behavior, is a dead giveaway that they are delusional. Also, a blood test tells a doctor a lot more than most Morgies realize. There’s no question as to whether or not the doctor’s diagnoses are correct. Only the Morgies believe that the doctors are being judgemental or lazy. Personally, I don’t care what kind of tests the Morgies have, as long as they aren’t being paid for by insurance. Insurance rates are high enough already, and if the insurance companies have to pay for these foolish tests, rates will certainly go up. I do have reasons not to stand with the Morgies. They are endangering everyone with the misuse of antibiotics. Many of them also abuse their children, spouses, and pets. The belief in Morgellons is ruining a lot of lives and putting everyone at risk. And the things that Morgies are taking a stand for are lies.

  20. I don’t like the bum rap these patients try giving to dermatologists, general practitioners, and mental health professionals.

    Dermatologists are faced with patients who go to them for something that runs a whole lot deeper than a skin problem. They aren’t prescribing outside of their field of expertise when psychotropics are clearly indicated. They also give referrals to mental health. They’re doing their job.

    General practitioners can’t necessarily assess what a patient’s full health complaints are when one outstanding sign is presented that needs to be dealt with first. They’re prescribing psychotropics when they’re clearly needed too, and giving referrals to mental health professionals. They’re doing their job.

    Since the deinstitutionalization movement, mental health outpatient clinics are all over the place to assist anyone who has the insight to know when they need help. Some communities have outreach treatment programs, and I think that the “morgellons disease patient movement” has proven we need a lot more.

    Doctors outside of the mental health field are practicing excellent medicine when they recognize mental health issues in a patient and follow the guidelines laid down to treat them for it with prescriptions and referrals.

    “Morgellons disease patients” say, and do, a lot of things that are only based upon the reality of their own experience, a very bad one, having no resemblance to actual reality. They seem to believe that cures can be found, for anything relating to them, through only the scientists that live inside of their minds, and through their representative quack scientists who’ve fraudulently promised them such nonsense.

    They’re slipping farther away all the time, and, sadly, seeming to want to.

  21. whatever. it is neccessary to conduct every test the protocol calls for because thats how the diagnosis is made. all y’all keep saying is blah blah blah. we didn’t establish the protocol. its established for a reason. guess y’all ain’t so sure of yourselves after all. gee, big surprise

  22. I think the key is found here:

    http://www.emedicine.com/derm/topic939.htm

    Tests to assess other causes of pruritus (eg, low iron level, liver or kidney disease) can be performed if clinically indicated. Examples include evaluation of the complete blood cell count; urinalysis; liver function tests; thyroid function tests; and determinations of levels of serum electrolytes and glucose, blood urea nitrogen, serum creatinine, serum vitamin B-12, folate, and iron.

    The key being: “if clinically indicated”.

    You don’t test someone for something if there is no indication (or likelihood) that they have it.

  23. Oh bugger, bugger, bugger I dont even wish to go here, more tightly wound theories.
    But tightly wound is the key.
    The excerpt which follows is from Seasprite, but to my mind it neatly covers all the bases, if we are to look at morgellons as an inverted pyramid, by this I mean that there is possibly one agent responsible, but following initial infection, the body through altered pheremone production, acts as a host and a metamorpic transitional vessel for other organisms.
    Here is the link, thankyou Seasptite; the numbers in brackets are mine, these are points I will attempt to address.

    “Strongylus monospinigerum – (temporary name given for this in China)

    General description:

    An unidentified organism, which is infesting more and more homes across the country.(1) This particular creature apparently houses itself in lint-like fibers which it seems to weave into a tiny ball, like a nest or cocoon,(2) and contacting human skin via floors or clothing, bores into human tissue to take up residence in the body. (3)(Regular laundering with hot water and detergent apparently do nothing to kill the organism in clothing).(4) Once in the body the following symptoms result: (5)

    - Open itchy lesions on the skin appear (from tiny holes to many millimeters in length)(6)
    - Intestinal discomfort begins or slight anal discomfort(7)
    - Straight red lines (track marks) just under the skin are sometimes seen(
    - A “crawling” sensation is repeatedly felt on the skin and scalp, although nothing is visible to the naked eye(9)
    - Fatigue and lowered resistance to disease develops over time(10)
    - Localized muscle pains occur(11)
    - Sharp, painful tinges in tissue are felt(12)
    - Blood (reddish brown) spots can be seen which over time move from deep tissue areas to the surface of the skin (13)

    Upon recent investigation by Microbial Diagnostics, Inc., the following was observed concerning selected samples of the lint-like balls:

    Dr. Steven Doggett’s observations:

    “Regarding the samples: contained approximately 15 structures. At the macroscopic level, each appeared to be small masses of lint or natural fibers approximately 0.5 to 1 mm in diameter. At the microscopic level (examined at 100x and 450x), the structures appear as tightly woven, but irregularly shaped stands of natural fibers. Each mass consists of a heterogeneous assemblage of fibers – the vast majority of fibers lack color and are somewhat consistent with Figure 6 provided by Dr. Amin’s Parasitetesting.com web site:
    http://www.myplanet.net/yeec60bp/figure6.jpg (14)
    Approximately 20-30% of the fibers were tinted blue, approximately 5% were tinted red, and less than 5% were
    tinted green. Each structure varied in its specific assemblage of colored fibers. Some lacked colored
    fibers altogether or contained only one a single tinted fiber, which was usually blue or red. Occasional wool
    fibers were also seen and these appeared as dark brown. In my opinion, most if not all of the fibers are
    natural – likely cotton or paper and some wool. (15)

    Also present within the fibrous matrix were occasional fungal spores. These spores are typical of cross
    contamination by background levels of spores suspended in indoor air or deposited as constituents of indoor
    dust. There was absolutely no indication that the fibrous structures are fungal in origin or that fungi
    co-exist within the assemblage other than by chance alone.”
    “Two of the 15 structures contained a single nematode-like organism. (16)Although this is outside my area of expertise, the morphology was most similar to filariform larvae of hookworms or possibly a larval form of Ascaris (roundworm). The organisms were identical in morphology. Their presence was not readily observable because each structure had to be carefully teased apart to reveal the inner “core”. If present, this is where the organism is found.” Two of the 15 structures contained a single nematode-like organism. Although this is outside my area of expertise, the morphology was most similar to
    filariform larvae of hookworms or possibly a larval form of Ascaris (roundworm). The organisms were
    identical in morphology. Their presence was not readily observable because each structure had to be
    carefully teased apart to reveal the inner “core”. If present, this is where the organism is found.

    The above phenomenon may reflect a portion of the organism’s life cycle. Perhaps the organism uses the
    fibers for protection and dispersal (fibers would become readily aerosolized – especially those that are
    less than 1mm in diameter). I was impressed with the fact that each structure is tightly compacted or woven
    - but this is not to suggest that the fibers originate from the organism; rather I feel that the fibers
    originate from your home (e.g. clothing) and the larvae becomes entrapped within the fibers – or the organism
    purposely organizes the fibers into a protective “cocoon”. (17) It would seem very odd indeed that the
    fibers would enter your skin as you describe. But even if just a few of the fibers entered your skin and assuming this is similar to Dr. Amin’s observations, this could explain the incidence of fungal or other
    microbial infections – these fibers are anything but sterile. The appearance on external human skin as observed by Dr. Amin would suggest that the cocoons are shed upon entry. The organism may not complete its
    life cycle within a human host – as occurs for some species of Ascaris that are specific for other animals
    but may enter human hosts with varying degrees of effect. In some instances visceral larva migrans are observed.”

    Let us now go through the points I have numbered, by no means a complete list of all the relevant details, but enough to apply the “known knowns” algorythm;

    (1)Infecting homes; this raises a very salient issue. Is this a house toxicity issue, rather than a compromised immune system status?

    (2)The fuzz balls we all see are possibly this cocoon, if so, people, we can now see the enemy!!!

    (3)Boring sensations, acute, painful and invisible excepting perhaps a reddish welt. Boring, indeed.

    (4)Impervious to normal washing, here we see the use of products, help me here please Bubba, to kill the organism in its various life stages. I think vinegar, oxygenated washing powder, borax are products for the wash, but as I do not actually know, it would be best to consult Bubba’s treatment steps.

    (5)According to Staninger there are 93 separate symptoms. That means 93 different variables at play on this line of the algorythm alone, each with a different cause/effect route in the body, on the mind and psyche.

    (6)The lesion…this line of the algorhthym has a routing shift at the very start; has the lesion been disturbed? Y/N?
    If yes, then physiological and auto-immune events will occur at a different rate than if the area is left undisturbed.

    (7)Intestinal disturbance and anal discomfort; Dr George Schwartz suggested FOOD GRADE diatomecaecous earth to lacerate the adhesions on the spleen, above the hip, below the rib, left hand side. I spoke to Dr Schwartz on the phone at length last year and he described the lacerating effect on the mucoid adhesions. Thanks Doc. As to the anal discomfort, thankfully we restrain ourselves from unabashed pooh talk, but I always, always need to know the location of the nearest loo, and am often thankful for the solitude of a quiet corner to scratch my butt. That, too ,is boring.

    (8)Subdermal veinous reddening, its just the way that it colonizes the body, looks like sepsis. Perhaps, at this line of the algorythm, we need to take some clinical notes, to range the quotient and measure the domain of the spread through the body, is it an early marker like the “bulls eye rash” or is it an environmental factor, like the lunar cycle, or pollution etc etc.

    (9) That “crawling ” sensation. We need to, once again clinically quantify the whens, the wheres and the strength of the sensation, juxtaposed against normal lifestyle activities. For example I feel “better” and “cleaner” when I am in the bush; is it because of the absence of exposure to the “toxic house syndrome” or urban pollutants, be they carbon monoxide or other, more subtle and devious nasties. So, at this line of the algorythm we can put in the times, places and events which bring the sensation to its maximum degree of irritation.

    (10) Fatigue, we all feel it, it is our greatest fight, and to alter the attitude to laugh at the “feeling” of tiredness and get outside to kick a goal, is, in my opinion the best way to square up to the challenges we face. All is mental….be a winner. Anticipate success. On this line of the algorythm put in Willpower and steely determination to overcome fatigue and it’s attendant maladies.

    (11)Muscle soreness and the spasms and twitching are uncannily similar to restless leg and Eckboms, but I am not ruling anything in or out, simply collating facts; my leg twinges 30 minutes after retiring when the ELF beam hits me…I’m joking, I hope…

    (12) Those twinges, just build up and dart, but at this point of the equation we again, must clinically, and objectively note and collate.

    (13)Indicates mobility in the body, or a metamorphic change, where are all the microbiologists?

    (14)This line is easy, Smilykins was right “Simplicity is the answer to all complex things”. Looking at this line of the algorythm in isolation would cause us to wonder where these fibers appear from? Nature is full of fibers of all types and cotton is cited as being an agent of infection, so my point is fiber “stripping”; i.e. the towel which disintegrates? Fiber stripped, socks, the same. This explains the unusual lint build up we see in affected houses. Interesting? Logical?

    (15)Cotton, paper and wool…..sounds like the little bugger is a pac man, fibre stripping by day nesting in a sybiotic cocoon with…. what? At this point the algorythm needs a big belly, to take in the following possible symbiotic components and the resultant variables which ensue. The possible symbiotic organisms co-extant with strongylus are Byrozoan, agrobacterium, collemba, e coli and others existing within the body, and external, within the cocoon, outside the body, spiders with metallic thorax non invasive to human host, but still able to effect its venom through the plasma exchange with the stronglylus and the spider which also lives in some, larger cocoons. The stronglylus feeds the spider our fluids and the spider houses the stronglylus? Does the spider build the cocoon, shredding fibres for its task? As I said, this line of the algorythm needs lateral thought, clinical notation and rigorous scrutiny, for it is at this point where the furiously spinning pendulum of theories loses cadence.

    (16) Nematodes are identifiable by the segented rotary motion they exhibit, being bi-refringent, they will be visible against light. Bi refringent means to retract light.

    (17) Therefore, we must look beyond our bodies, cease trying to pin it down to a single organism or biological process.

    If it is natural, it is indeed remarkable, that such diverse kingdoms, from arachnids(spiders), through roundworms, nematodes and perhaps those wee translucent “moths” to byrozoans and mycoplasmas to agrobacterium, minus the Ti gene, to e. coli, can form a symboitic system capable of such complexity?
    One marvels at nature if it is so.

    I hope this helps, I know its long , but it is the way to see the issue.
    Lets look at the 17 lines as if it is a computer program.
    Then we define the issue morgellons, we demystify it, we advance with knowledge.

    But I have to ask Why are we forced to speculate and defend our illness and live in isolation, spectred by the thoughts of no relief.

    Why?

  24. Having read some pro-and con- debates about Morgellons in the past weeks, digested the information and come to a conclusion, I really have only a couple of things to say.

    To PPY – It may well be that you have brain lesions and various other symptoms of something which is obviously causing you considerable anxiety and discomfort. However, the reality of these symptoms does not validate the existence of Morgellons. You undoubtedly have symptoms of something. You do not, however, have fibrous things crawling under your skin. I am sure you believe you do, and am sure that you are completely outraged that anyone could suggest you are fooling yourself. But you are. The mind can play hideous and unnerving tricks on any person, and the worst part is, that person can at all times feel that they are 100% sure they are *not* delusional. There is nothing wrong with an admission that you might be wrong about the Morgellons. You will not be stigmatised or dismissed for having a delusion that fibrous things are crawling under your skin *if* you recognise that it is a delusion and follow doctors advice instead of fighting against them to prove you are right. Doctors are there to help you get well, both physically and mentally, but they are not fairy godmothers. They can’t wave the wand. You have to work with them.

    To MelissaJ and anyone else who feels they may have ‘Morgellons’ – from what I can see, ‘Morgellons sufferers’ are in fact a group of unwell people who all share a more-or-less common delusion (something which is not at all uncommon in human society). The internet has allowed them to come together and reinforce their own and each others’ delusions, which has resulted in them becoming more unwell. I would recommend you see a qualified doctor. If you are not happy with the diagnosis, seek a second opinion. However, if both diagnosis match, then you should certainly start putting some belief in their opinions and taking their advice. Of course you shouldn’t go through with any treatment that is making you worse or that you are not comfortable with, but try this on for size: Go in with the assumption that you do *not* have Morgellons. Do as the doctors advise (remember – it’s a two way street – you can talk *with* your doctors about treatments for things – it’s a co-operative process), and see if your symptoms improve. If they do, great! If not, inform your doctors of this. Most of all – do not assume you have Morgellons until the doctors have ruled out other possibilities and are willing to persue this line. My bet is that it won’t happen, because you’ll be well long before Morgellons is the last available diagnosis ;)

    My $0.02, and probably my last posting here, but the 4:47am bug took me ;)

  25. Interesting blog entry

    GruntDoc
    Ramblings of an Emergency Physician in Texas

    http://gruntdoc.com/2007/09/delusional-behavior.html

  26. Subject: MORGELLONS MENTIONED IN THE 2008 US SENATE APPROPRIATIONS BILL!

    Click here: http://www.earmarks.omb.gov/resources/tracking_pdfs/senate_floor_account_LA.009.38.0511. pdf

    Page 76 to 77

    Morgellons is now an official disease in front of congress and in a bill.

    Thank you

    Apologies are welcome to all of us suffering and all of you jerks saying we are not. You have now been proven wrong.

  27. Relating to Sarah’s comment, from:
    http://www.thesundaypaper.com/More/Archives/tabid/98/articleType/ArticleView/articleId/973/Parasite-diseaseor-madness.aspx

    The lesions, like the one on Pickens’ face, are widely dismissed as self-inflicted wounds or the result of the incessant scratching that the delusional parasitosis elicits.

    There’s that word again, “dismissed”. It’s ridiculous. It’s like saying the doctor said “oh, that big sore on your face, that’s just a self-inflicted wound, don’t worry about it” or a dermatologist saying “you’re worrying over nothing, it’s merely the result of incessant scratching elicited by delusional parasitosis, you just need a cold shower and you’ll be fine”.

    Journalists, please, use the word “diagnosed”, unless you really actually mean “dismissed”. Think about what “dismissed” means. Look:

    The lesions, like the one on Pickens’ face, are widely diagnosed as self-inflicted wounds or the result of the incessant scratching that the delusional parasitosis elicits.

    See?

  28. That wouldn’t make for a very exciting “us-versus-them” article now, would it?

  29. Dearest,Sarah,UGA lifers & all you other naysayers,
    Really now,we all are not delusional.
    These things live in my skin,they itch,are painful,and quite
    unsightly.They are REAL.
    Be aware,the public wants the truth.
    Stuff your witty remarks back under your bonnet,toots!

  30. I think a “naysayer” is someone who won’t listen to their doctors’ repeated diagnoses.

  31. Dear Karen,

    You say “we are not all delusional.” But we can both agree, some people suffer from delusions. Why do some protest so vehemently a hypothesis that has nothing to do with them, since they are not delusional? It would be like me protesting diabetes research. Please show me a quote where I have said “People who think they have insects in or on their skin are all delusional.”

    And thank your for the ad-hominem attack, but do you have any issues with facts that we can discuss together?

  32. Pleaseeee….smileykins:
    Seriously, have you EVER looked in the mirror at your face with a magnifying glass? I have. And it’s not “delusional parasitosis” as the medical field and general public would like to believe. Unfortunately, when “morgellons” becomes a reality, it will be too late. Sounds ominous? It is….I have seen morgellons on people from California, Washington, Montana, Arkansas, Pennylvania and New York. This is a very real and very serious situation. Chemotherapy has been the only thing that has reduced the number in, and on my body. Colo-rectal cancer enlightened me to the destructiveness of this parasite. Do not judge others until you judge yourself.

  33. Hi, Roselle. You said…

    Pleaseeee….smileykins:
    Seriously, have you EVER looked in the mirror at your face with a magnifying glass? I have. And it’s not “delusional parasitosis” as the medical field and general public would like to believe.

    Seriously, no, I have NEVER looked in the mirror at my face with a magnifying glass. Roselle, may I presume that you’ve discussed your concerns with a doctor and that you, indeed, have not been diagnosed with delusional parasitosis?

    In regards to anyone “liking to believe” that whatever you have (*YOU*, and not a bunch of other people who do have delusional parasitosis, as well as many others with various illnesses that aren’t being adequately treated)…I don’t think that the medical field and the general public derives anything even remotely resembling pleasure from the facts surrounding patients who ARE living with untreated delusional parasitosis. The inability to adequately or successfully treat illnesses of all sorts is a very common trait among people, for lots of different reasons, too, and that’s not something anyone gets pleasure from either.

    Roselle, I’m not judging anyone. There have been a few members in my family with colorectal cancer, too, and I am so sorry you were diagnosed with it. What stage do you have, and have you had just the chemo, or have you had surgery too?

    Sincerely, Smileykins

  34. First off, I had never even heard of Morgellons until a couple of weeks ago.

    A couple of years ago, I started showing strangely similar symptoms. It appeared to be scabies that just wouldn’t go away. (And got much worse!!!)

    The feeling of this is enough to drive ANYONE bat shit insane. It lasted for over a year with me.

    Permethrin helped slow the spread, but it did not stop it. Eventually my doctor agreed to give me a double dose of Ivermectin (one weeks interval) and Permethrin at the same time.

    Whatever the hell it was, that killed it. (And for the record, My doctor thought I was nuts until then)

    Now then, my medical history may be a factor.

    I recieved Gamma-Globulin shots as an infant.
    Tonsils removed in childhood.
    Ulcerative Colitis at 27
    Severe allergic reaction to asprin (Skin related)
    Allergic reaction to Imuran (liver)
    Must take Prednisone two to three times a year
    Psoriasis ? (waiting for the biopsy)

    I hope this is helpful to someone.

    anyone can contact me ScottDSullivan@aol.com

  35. Did you have unexplained fibers? Lots of things can cause itching and skin problems.

  36. My dermitologist said I have Prurigo nodularis. (Not Psoriasis)

    I never noticed any fibers, but I did have some sort of unusual parisite as well. Possibly from a dog.

    Whatever the parisite was, it behaved like norwegian scabies.

    I got tested for AIDS just in case. The test came back negative.

    Other blood tests I had done showed that I have an unusually strong immune system.

    This all confused my PCP a great deal. (And me too)

    Is it possible that morgellons is a combination of an allergic reaction, (resulting in increased skin temperature), An unidentified parisite that likes hot skin, and Prurigo nodularis?

    Also, the use of prednisone may be a factor with people with inflamitory conditions. (Auto-immune, ie colitis)

    This would explain how people from seemingly opposite ends of the immune system spectrum wind up with similar symptoms.

    Just a thought…

  37. Back to the fibers issue for a second. I did notice that the skin surrounding the Prurigo nodularis peeled off like something resembling thread.

    I’m still certain it was nothing more than dead skin.

    Hey, has anyone tried Ivermectim to cure this?

    I’m curious about results…

  38. Sully, excuse my forwardness, and I’m sorry if I sound rude. I don’t always express myself as politely as I would like to when something concerns me.

    I’m very sorry you’re ill and not able to manage your conditions any better than this. You’d said that up until the point in time that you’d eventually gotten your doctor to agree to giving you a double dose of Ivermectin and Permethrin at the same time, that he or she had thought you were nuts. Why? If your doctor(s) know what you wrote here as your medical history…

    Gamma-Globulin shots as an infant — isn’t significant
    Tonsils removed in childhood — isn’t significanUlcerative Colitis at 27 — ISis significant
    Severe allergic reaction to asprin (Skin related) — avoid it
    Allergic reaction to Imuran (liver) — IS significant
    Must take Prednisone two to three times a year — significant

    Is Imuran and Predisone how your doctor has been helping you manage the ulcerative colitis? Ulcerative colitis has cutaneous symptoms, and I don’t know what kind of doctors you have that wouldn’t know that. Have you been seen by a specialist, or are you treating with only this primary care physician and a dermatologist?

    After reading so many accounts of persons who believe in Mary Leitao’s concocted “disease”, I can understand that your skin problem is apparently so severe for you that you may only have it, and nothing else on your mind when you’ve seen a doctor, but good gosh Almighty, Sully! What the hell was a skin biopsy done for?! Did you get the dermatologist to agree to that through pressuring him or her?

    Could you please explain what the word “liver” after “allergic reaction to Imuran” means. How long were you on Imuran before reporting the ill effects to your doctor? Do you have liver damage? In my opinion, that doctor didn’t have your best interest at heart in succumbing to your pressure and agreeing to prescribe Ivermectin and Permethrin…especially to a patient with ulcerative colitis or anything wrong with their liver functioning.

    Sincerely, Smileykins

  39. Having been uninsured at the time, I was not able to pursue the condition with every possible test. I was mostly a charity case for my doctor.

    I never took asprin until adulthood so I was unaware of the allergy.

    The Imuran seemed to worked great for a couple of weeks until I had trouble keeping food down. Then, after two months, I started turning yellow so I discontinued the Imuran. (I think that’s a good indication that the drug was not friendly to my liver) My liver functions went back to normal inside of a week.

    As far as what is and is not significant, I have no idea. That’s why I wrote down as much as I could remember.

    I did have some sort of agressive parisite. Donating my time in nursing homes was not a good idea for me.

    For the record, my PCP always has my best intrest at heart.

    Look, If Ivermectin works, why knock it? It worked for me.

  40. Warren, I’m sorry if I offended you. I don’t understand your style of reasoning, any more than you understand my style of reasoning. My reasoning tells me, that if you were interested in understanding such a serious condition as ulcerative colitis, that you would have availed yourself of all the information you could find on it, to discuss it with your doctor. Should you ever decide to do that, the most reputable sources of health information on the internet are websites associated with the National Institute of Health, such as Medline. I wish you the best, Smileykins.

  41. Sully! Oh, nooo! I just sat back down, while in the process of cooking dinner, and see that I called you, “Warren”. I think Warren might be the username of someone who’d recently posted somewhere on this blog, but, getting mixed like I did is just the way I am. I hope you’ll excuse me. (Warren, too, if there is such a person. Hehehe.)

  42. I’m sorry, I’m dying laughing right now!!!!!

  43. Hi, Sully. I was laughing over calling you Warren up there. I have a lifelong tendency of giggling myself silly over goof-ups I make sometimes, and that was one of those times.

  44. If I had difficulty talking my doctor into prescribing dewormers for me, I would really want them to help me so that I could go back and tell him “I told you so”. In fact, the desire to be right would probably be enough to create a placebo effect. But that’s just me.

  45. If you knew me at all, you would know that I’m not the “I told you so.” type of person.

    I fully understood that my doctor was placed in an awkward position, and I sympathized with his dilema. He’s a go by the book type of guy and the book was saying it was all in my head. I respect his approach fully!! (keep in mind that the book is still a work in progress and always will be…)

    While Ivermectin is described as a dewormer, it is also used in many countries as a first course treatment on scabies. Permethrin is simply a more common first course treatment in the U.S. (It’s also much easier to deal with than permethrin.)

    Again, I never claimed to have Morgellons. I just noticed that I shared similar symptoms. (No worms..)

    What I did have: was an autoimmune disease (Ulcerative Colitis) requiring immunosuppressive drugs.

    Rare allergic reactions to asprin based drugs. (increased skin temperature and rash)

    Prurigo nodularis: Difficult to diagnose skin disorder that is extreemly itchy!!

    Scabies or Mange which combined with Prurigo nodularis is the worst nightmare on Earth.

    Enviormental factor: Volunteer work at a nursing home where scabies were rampant.

    Bad luck!! (see above…)

    Placebo drugs don’t work on me. I wish they did though.

    My only point in posting here is that there may be a small percentage of people who think they have Morgellons, and may in fact be going through what I went through. Being treated like you’re nuts when you are in real pain is not helpful at all. It’s fuel for delusion.

    I’m concerned that the scientific method is not being employed in suspected cases of Morgellons. Patients are being dismissed based upon pre-conceived notions and not science.

  46. Sully, with all due respect,

    # Sully on 27 Jan 2008 at 4:06 pm

    First off, I had never even heard of Morgellons until a couple of weeks ago.

    “Patients are being dismissed”?

    No, the patients’ version is that they’ve all been dismissed, as well as that they’re all misdiagnosed. The Morgellons Research Foundation has driven a whole shit-load of incorrect thoughts deeper & deeper into their minds. Doctors have been diagnosing these patients, all along. The patients have been continuously dismissive of their legitimate diagnoses.

    Some patients (such as those with delusional parasitosis, who’d, primarily, made up the bulk of “morgellons disease patients” in the beginning), are acting out accordingly. Others, who’ve chosen to adopt “morgellons disease” as being what they have, are acting out according to their various illnesses, too.

    And, if not for Mary Leitao’s bringing them all together for what she’s wanted them for, we’d all be a lot less aware of the plight of such types of patients and their families. The sad truth of the matter is that I doubt anything can be done that hasn’t already been tried, yet, I remain hopeful for their future.

  47. Smileykins, with all due respect,

    I agree with your assesment of Mary Leitao. My reasons for that may differ from yours only slightly.

    She has made it difficult for people with similar symptoms to be taken seriously by their doctors. (That would be the biggest difference…)

    As far as being dismissed by doctors, I can speak from first hand experience about this subject, can you? (I’m glad you are not my PCP…)

    Last time I checked, doctors are humans. Humans can be dismisive. Sometimes they’re right, sometimes not.

    Smileykins, please don’t associate me with Mary Leitao ever again. I have not defended her, will not, and don’t plan on it ever.

  48. Excuse me, Sully, I don’t wish to bicker, but I hadn’t associated you with that Munchausen Syndrome by Proxy mother, and I think our opinions of her probably differ much more than just slightly.

    Have I ever felt dismissed by a doctor? Of course. I’ve been wadding through (no, “strategically maneuvering my way through”) the health care system, solid, for the past 30 years, for others, as well as for myself. It goes with the territory.

    Numerous times, I’ve said that patients who believe that “morgellons disease” is what they have need a STRONG patient advocate to do all the communicating with doctors on their behalf, as well as to manage their treatment. Based upon what some such patients say, though, of course, a whole lot more is needed for some.

  49. Wow! No one said that you defended Mary Leitao. But despite the fact that no one in their right mind would defend Mary Leitao, no one with an unshakable belief in “Morgellons Disease” is in their right mind either. Leitao brought these delusional people together. And whether they like it or not, or like her or not, they are all now considered to be Morgies. Smileykins didn’t associate you with Mary Leitao, but you have done so yourself if you have adopted the same delusional belief system.

  50. i think if enouph doctors developed this thing that is rapidly growing ,it will then be believed that its not delusional.you know when you have common sence and then all of a sudden your life has changed 100% .you are not going to sit and lose everything just because uh oh im suddenly a nutcase.i am trying to go to school and be sombody even with my symptoms and dont even know how contagios i am. but the world works like this, if i go to school and someone gets my symptoms that would be a shame but if i dont go and become a nobody and dont work and sit around depressed about it i am mental ,you can not win this and nobody cares.you almost have to be in hiding to be treated right. all we want is to get our lives back.do you evert imagine what it like to eat and sleep ,walk talk everything on a daily basis without the feel of tiny bugs all over your body, if you did you would be talkin like me!

  51. I think that since the moderator refused to post my last comment, which was critical of the reading skills of Tallcotton, shows a serious bias in this discussion.

    Does civility and personal attacks only apply to one side?

    Sandra, I would like to hear from you personally. My e-mail address is in an earlier post on this thread.

    I don’t think you will find much in the way of compassion from anyone who runs this site.

    Sully.

  52. Thank you…

  53. Small-

    Your entire “listen to your doctor not your body” is strange.

  54. Sully, and William4you, it’s undeniable that patients of “morgellons disease” relate to each other in ways that nobody else can.

    William4you, I’m going to give one simple little example of “listen to your doctor not your body”. (Just one.)

    Quite often, I’ll read discussions between “morgellons disease” patients about eating certain types of food that (obviously) makes them become ill. They’re the exact types of foods that will cause anyone with digestive problems to become sick, and, therefore, should be avoided.

    If you’re very familiar with the “morgellons disease” situation, then, you’ll probably understand what I’m referring to, in saying that these “morgellons disease” patients exchange information about (upon having eaten these types of foods) their morgie parasites becoming all stirred up. These patients appear to share a sense of satisfaction in believing that eating foods to cause irritation to their gastrointestinal tracts is good. They think their “things” hate those foods, and that seems to make the patients who are making themselves sick pretty happy.

    “Morgellons disease” patients don’t have it all together, with everyone else being flawed in their thinking. Such patients may claim to know their bodies better than any doctor all that they care to, and that their doctors are idiots, but it does not make it so.

    Oh, now, sure, if such patients go into a doctor complaining about their skin, their stomach, their ears, eyes, nose, throat, or whatever body system is causing their distress, I can empathize on some level of understanding what they’re meaning about “knowing their bodies”. However, “morgellons disease” patients’ words and actions prove that they’re not thinking rationally. That very serious health matter needs to be treated (and treated before anything else, for many, it appears) so that any underlying problems can be seen as what they are, and treated, as well.

    Nobody has the same things wrong with them, all, called “morgellons disease”. American Medical Association doctors know their stuff.

    I think compassion is overrated, by the way. Getting well is way more important.

  55. http://morgellonsgroup.proboards23.com/index.cgi
    I don’t have morgellons but my wife thought she did and is on med ,and it is going away now(ziprasic) amazingly, so I have done a ton of searching and been following this site and have helped with wifes dr. and her in a non discreet way, Smileykins and Tallcotten I read your stories and she went through same thing except it wasn’t with the other things you mentioned . Slowly progressed into this when someone outside of family saw something on this on 20/20 or something,went downhill from there , a year later almost and she is back to normal but still seeing different dr. to make sure nothing else is really there. emerg visits you name it . I signed up to the top site at beginning of this statement to find out what others were doing and seeing if this was real , I couldn’t see the things coming out and nobody else could either . Anyways ,things are better now but I still come here to read posts and go to that other site to take a look. Anyways there is one guy on there now stargoer or something and is freaking out and they are telling him to stay calm and pray and keep on reading on what to do,, I think this guy will not make it if he stays on that site ,what would you do when you read those storys ,tell him to get help quick ,I feel terrible for those people that don’t have the support of family to actually get them hlep ,the real help they need … and not feeding him the crap they are doing . I also did a search for that hildy dr. and she wasn’t registered as dr. and also found a site that she sells things for skin care ,and also that site is an advertisement for her because the first thing you get is a pm on how to get ahold of her ,, I think more debunking on her should be appropriate. If only people before they diagnose themselves on internet go to there dr. before and things wouldn’t get carried away with them.

  56. lp, your wife is so blessed to have you. Practically no one from outside of the “morgellons disease” subculture can post comments on their message boards.

    I think the article in the link below is similar to this patient movement.

    excerpt:

    he met more and more people like himself, he grew convinced that he was part of…

    http://www.washingtonpost.com/wp-dyn/content/article/2007/01/10/AR2007011001399_pf.html

  57. I did register on site, and was posting about condition to find out, first post was referral to that dr. for consult, by phone even, must be good if she can give out diagnosis by phone, but that is what these people want, not what their own dr. is trying to do.. She still thinks there is something there and dr. is going at it slowly to dismiss anything else but the change was with the med. ziprasidone..

    When I talked with him last I saw a show called Trouble in Mind, hosted by Kate Jackson and there is a 13 part series. I just caught the last 20 minutes of it and it was exactly what people are going through and soon as you are on the antipsychotic med. it slowly disappears and that is exactly what has happened with my wife. I was unable to find that particular series in our library but they do have it, this is the one on delusional, it is a must see for anyone…

    Our family couldn’t take it anymore and my wife was willing to try anything as she was given that med back last summer but denied having mental health problem ,so somehow he talked her into taking that med and there was a difference within 2 days and has been getting better ever since ,, this was middle of this jan. She is looking to get job again after losing hers last sept. .. also with that site after she took med and was getting better, I removed my posts by saying: we went in a different direction and getting proper help now..

    I tell ya, this put our family through h#$@ and back and do not wish it on anyone , I was ready to take kids out of house and just leave, it got so bad, My friends were starting to plan on making meals for us as I was doing everything and to give me a break. My relations with inlaws is not 100 percent now as they could not see the real problem and would sidetrack progress and did originally tell her about the morgellons. Myself I had already read up on it but could not see it being real and did not see anything coming out as with dr. He would say show me and she couldn’t but she had bags of fibers to bring in..

    Anyways our life is getting back to better than normal now ,slowly but surely. She is the one that wanted to go back to work even and is going out everyday now .. Before this med, her life was consumed by this, never went out, looked aged, lost friends, job, you name it. This site is the best to read, and I am with you guys completely and will be here often.. Others that think they have it, unless your dr. has diagnosed you as having morgellons, don’t follow the others advice and stick with your own dr. It may be slow but they are doing it in a manner to really not upset you and go off deep end (as you might say). I know, my wife was almost committed several times and it was at that point if she didn’t continue with this med, I would of agreed with the dr. this time and would have had no choice. Sorry needed to rant a bit as it feels good to get it out .. With Ya………………..

  58. LP, thank you for sharing your story. I think it’s very important. Many people such as you wife have been harmed by the Morgellons movement, and that’s really what this site is about – trying to give a broader perspective to the whole set of problems.

    Your advice is great. People need to work with their doctors, and understand that it might take some time to get to the bottom of what is going on, and to find out what treatment works best for their individual problems. Self-diagnosis via the internet is hardly ever going to help.

    I’m glad your situation is continuing to improve, and hope it stays that way.

  59. lp! That isn’t a rant, that’s a testimonial. What a man, what a mighty good man. God bless your family, and I pray that someday, soon, your in-laws will be able to develop an understanding of the situation.

  60. thanks ,, it has been a tough time as you guys know yourselves and I think you are doing right on keeping up also, and to you Michael ,i didn’t mention you before but was thanking you also..Also when you mention the Morgellons movement ,and it is exactly that ,this will blow up more over the years on internet if proper tv shows do the stun factor on this.. I also emailed inside edition when they did there bit on it the other week to tell them they should of did more research on this before airing and just not go for shock factor as well as the other shows that have done this.. I was thinking of emailing Dr. Phil to see if can do a proper set on this.

    But I think the best show yet was the one I mentioned trouble in mind was the eyeopener one for me and how it really hit me after seeing someone else going through it thinking the wrong things are wrong and a little chemical imbalance can set things the wrong way, but truly curable in a very short time ,instead of suffering months and years the other way.I have kept notes to myself on this journey and might blog it one day ,but I am waiting for everything return normal before doing.

    My wife has applied for a couple of jobs this week and you do not know how excited I am and planning on going to a party next week (this was not in picture the past year). Hope is there if you can understand how a chemical imbalance can cause such a disastrous problem in mind.. Myself i went to therapy sessions ,because I thought it was me not understanding and he did help ,but I do regret not acting faster . I ‘ll be here…

  61. Doctors only know what they are taught. And they can only be taught what is known. It has certainly happened before that they were taught wrong because we, as humans, did not know better yet.

    A brief view of our history:

    “Cigarettes are good for you.”

    “The cramps are all in your head.”

    “The world is flat.”

    Etc.

    People truly believed these things at one point or another.

    When new evidence came around, we learned the truth. There are many things we don’t know yet and there will be many things we learn in the future. To assume this disease (or anything, for that matter) is not real because we don’t currently have a scientific explanation for it is beyond arrogant. How can we possibly assume we already know everything there is to know? We do not.

    If we truly care about our fellow human beings, we will put our egos aside and help them. Period. You would think we would have learned from our history that we should be a bit more open-minded.

  62. BJ, being open minded is fine. But you need at least a little evidence to base treatments on. Lots of doctors have looked into Morgellons with an open mind, and have found the fibers to be lint, and the itching and lesions to be caused by other skin conditions. Hence, they treat those other conditions.

    You say “this disease” as if there is one common disease, when all the evidence suggests there a large number of different conditions that can lead to the same symptoms. Are you open minded enough to look into that possibility?

  63. Yes , I agree with Michael , keep an open mind and let the dr. treat you ,not yourself or the other websites,, they are the problem now as people go to them and don’t get cured there also ,except try everything that they suggest ,or talk with there dr. on there website ,, (who is probably running it)that is why you get an instant pm on to contact them.. And it is hard to believe that all this stuff is growing out ,, wouldn’t it clog your blood vessels and cause clots and anuerysms if it is like that..the symptoms list is too close to everything else,, depression , arthritis , old age,, etc… I had alot of those symptoms , and I know it is not that but getting old and old injuries you name it,, now I am suffering with a herniated disk ,living with it ,and trying to do right things.. Life is to short to let something like this consume you,, that is why there are drs. and let them figure it out.. what you have ,, I repeat ,,,, don’t self diagnose yourself,, worse thing you can do over internet………. EXPERIENCE…

  64. It just irritates me to see people shove difficult clients to another department (or in this case, patients to the shrink). The guy may be delusional, but were you able to cure the lesions? Or is talking going to do that?

    I mean, fibers or not, I think it can’t be too difficult for a doctor to convince a patient (particularly one so scared of those lesions) to not touch them at all. Does this help cure them? No one knows.

    Honestly, if it were something as simple as them being scratched into existence, stopping that shouldn’t have taken a country level political intervension.

    What about the joint pains? Were they self-inflicted from all the scratching putting a load on the joints?

    Regardless of whether this is a new disease, doctors need to figure out if they are too good for certain kinds of people, or if they want to help all who need it.

  65. I think it can’t be too difficult for a doctor to convince a patient (particularly one so scared of those lesions) to not touch them at all.

    You should ask a doctor about that. If someone is obsessed with picking at their skin, then how are they going to stop. It’s like an addiction. Even without a psychological component, scratching is very difficult to stop, see Cindy Casey, head of the main Morgellons fundraising organization:

    http://www.cherokeechas.com/Morg01.htm

    Exam room – Cindy disrobed and Shelley looked at the lesions, which now are all over her buttocks, lower legs, forearms, thighs (these are very recent), upper back and (very few) on the scalp. She was appalled that Cindy had been scratching them – well… they ITCH, (bitch)..!

    Shelley gave Cindy explicit orders not to scratch and Cindy explained that it would take general anesthesia to keep her form scratching something that burns and itches as bad as this condition.

    Then you ask:

    What about the joint pains? Were they self-inflicted from all the scratching putting a load on the joints?

    Everyone has joint pains. I have joint pains. Anyone over 40 has joint pains. Most of the symptoms on the symptom list are symptoms of getting old – the aches and pains, the stress and weariness of everyday life.

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