Dismissed as Psychological

sarahbionedunn says:

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.

melissaj says:

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!!

ppy says:

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

Smileykins says:

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?

Niels says:

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.”

Beth Burke says:

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.

Smileykins says:

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.

ppy says:

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?

tallcotton says:

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.

ppy says:

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

al says:

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?

Smileykins says:

Interesting blog entry

GruntDoc
Ramblings of an Emergency Physician in Texas

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

Karen says:

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!

Sarahbionedunn says:

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?

Smileykins says:

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

Sully says:

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…

Sully says:

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.

Smileykins says:

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.)

Sully says:

Why?

tallcotton says:

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.

Smileykins says:

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.

Smileykins says:

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.

sandra says:

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!

Sully says:

Thank you…

Smileykins says:

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.

Smileykins says:

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

lp says:

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…

Vidyut says:

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.