CDC mystery disease study heads toward finish line (Morgellons)

The Sunday Paper ^ | Sunday, August 03, 2008 | Spencer Freeman

[Scythian]

Karen Wells, a registered nurse in Indiana, has suffered from Morgellons since 2005 and, she says, lost a friend to the disease in 2004.

“Everything is so uncertain, but is does kill,” she insists. “I have seen [Morgellons disease] kill not just my friend, but in the hospital where I work.”

Wells, who works in a neurology unit, says that she sees Morgellons lesions on patients who don’t know they have it. The lesions are sometimes accompanied by cognitive symptoms such as anxiety attacks, panic and nightmares, she says.

[Scythian]

I fully expect they'll find nothing, they only received 300k for the study, less than the price of a crappy home in California. Add to that the fact that Kaiser has already told 100's of suffereres that they are insane would it would take real courage to admit they told hundreds of very sick people to hit the road and that they were not only wrong, be negligent. However, this is just the beginning, not the end ....

[ClearCase_guy]

A lot of folks think that this is just “delusional parasitosis”. If so, the statement that “The lesions are sometimes accompanied by cognitive symptoms such as anxiety attacks, panic and nightmares” would not be surprising.

[Aggie Mama]

I think I’d have anxiety, panic attacks and nightmares if I were sick and no one could tell me what the heck was wrong with me!

[Scythian]

DOP is an extremely rare diagnosis, if you do the research, you'll see it an almost non-existant condition. I have Morgellons, I have managed to get myself somewhat better and am able to work, I assure you it is very real, frightening, and bizarre. I was near death at one point, but hung on for dear life.

[Red Badger]

Are you ‘gellon?...........

[autumnraine]

Especially if worm/thread like “creatures” were growing out of you!

I’d have panic attacks a plenty.

[Scythian]

I am beyond the horror, which took two year, it’s something you stay on top of or die from, so no, not really.

[mpackard]

How do they (docs) explain away the lesions with the fibers coming out? Since the very first time that I saw pics of this disease I’ve been disturbed by it. I’ll pray that they one day find a cure and that until then you are able to manage it and find peace and happiness.

[Rudder]

Morgellons is more likely a mental disorder than a physical one.

[Scythian]

Thank you so much, most just like to make fun of it. It’s not just “being sick” but having something that is also extremely frightening. My health is pretty good right now, it comes and goes, I’m one of the lucky ones though, there are good support groups out there without them I would have perished for sure, I cannot begin to explain what has happened to me. I’m past the anger, fear, and just enjoying watching my children grow up, everyday that I wake up and feel half way normal I am so greatful, today is one of those days.

[Aggie Mama]

No. I guess I’m just sympathetic. I have “fibromyalgia”. It took several doctors and lots of diagnoses of “depressed” before I found a doctor that could treat me (low thyroid issues).

[Eepsy]

I don't know why I keep reading these Morgellon's articles, they always leave me itchy....

[mkjessup]

Morgellons is more likely a mental disorder than a physical one.

And what do you base that expert diagnosis on Dr. Rudder?

[Rudder]

Training, education and years of experience treating these kinds of disorders.

[Shion]

>>How do they (docs) explain away the lesions with the fibers coming out?<<

Lint.

[mkjessup]

Training, education and years of experience treating these kinds of disorders.

That's very interesting. How many actual cases of Morgellons have you treated or consulted on? Could you perhaps explain the pathology that results in a mental disorder producing lesions, physical fibres and the like in the victims?

If Morgellons is truly a psychophysiologic illness, what medications would you view as being appropriate?

[evets]

Could be worse...

[Scythian]

mkjessup, don’t waste your time on him. I am very sane, a professional, married with children, respected in my field, and yes, I have Morgellons. I don’t know what the root cause is, but more and more folks report in on the forums all the time, and tons are suffering and have no clue there are others like them. You should hear the testimonies when new folks find support, what a relief, I am not alone. More than a few on our forums have died, we are quite sure Morgellons was the main contributing factor, it really takes a toll on your health in all areas.

Some things really help, keeping your body Alkalin, Anti-Fungals (natural things not pharmasuiticals), Anti-Bacterials like colloidal silver, oregano oil, and many other things, oxygen such as Opaline Oxy, excercise, colon cleanes, and yes Anti-parasiticals, especially ivermectin.

I believe the CDC could find the root cause if they truly wanted to, there is a lot of political strife over this in the CDC, there was much politics in action to try to quell the study, it got a measely 300k, imagine that, for a study in California?

[Scythian]

Oh, one more thing, many of the anti-depressents end in “azole” which are anti-fungal, and many think that Morgellons at the core is fungal in nature. I would not be one bit suprised to find out that anti-depressents ending in “azole” help because they kill fungi and not restore some mythological imbalance in the brain. By the way, Fendbendazole is a dewormer, turns out to be one of the most powerful killers of fungi, even treating microsporidians. We have learned alot on our own, because we’ve had to.

[Harrius Magnus]

No credible medical or public health association has verified the existence or diagnosis of ‘Morgellons Disease.’

[Marie]

My mom spent 20 years with undiagnosed Grave's disease. She finally had a thyroid storm that got everyone's attention. She was suicidal, screaming, high fever, just loosing her mind. The docs thought she was having a psychotic break and I went toe-to-toe with them. I've never been so belligerent in my life. I *insisted* that they admit her and start running tests. I threatened to sue the hospital. I don't even remember half the evil things I said.

Finally her family doc called and said, "admit her." They still didn't find out about the thyroid that week in the hospital. A few days after her release she went back to the doc for a follow-up and they checked her thyroid. Grave's.

I've also had my own fight for the last 20 years, but I won. Turns out I had Celiac disease which caused malnutrition. I had BeriBeri. After my first B1 shot, the heart problems went away. After two weeks of daily shots, the nerve damage reversed. (Permanent nerve damage, my *ss.) Took another month for my memory to improve.

Yeah, we're just crazy, depressed, trying to get attention... Sometimes I hate doctors.

[Rudder]

My assertion that this is a psychologic disorder has angered a few on this thread...I guess they want to be physically ill, and I won't argue with them.

There are many disorders similar to this and I've worked with a hundred or so. Of those who said they had specifically Morgellons, I've seen about 8-10 as referrals from other physicians. My Dx is usually (DSM) Axis I: 301.51 Factitious Disorder with Physical Symptoms. The best-studied form of this Dx is Munchhausen Syndrome. It is resistive to psychiatric intervention and no medication is indicated.

As the advertisement which sponsors this article says: Try NutriSilver...can't hurt.

[Shion]

>>My assertion that this is a psychologic disorder has angered a few on this thread.<<

You’re not totally alone.

My personal belief is that a combination of societal emphasis on continuous introspection, lack of general fitness, and ready availability of mounds of medical information on the internet has developed into a whole new level of hypochondria and mass hysteria.

Almost makes me wish I was less ethical. I’d make a mint selling my patented miracle tonics to the perpetually ailing.

[Rudder]

...ready availability of mounds of medical information on the internet has developed into a whole new level of hypochondria and mass hysteria.

This has become a common complaint voiced by physicians, who see a marked rise in hypochondriasis among their patients. Merely reading a list of signs and symptoms of a disease, without the requisite training, education and, most importantly---experience---can often lead lay people to falsely conclude they have a particular illness. A condition known as "medical student's disease" is frequently seen in students who have consumed prodigious amounts of medical literature but who do not yet have the full training and education.

In fact, one of the cautionary diagnostic signs of hypochondriasis, cited in the literature, is a patient who presents with a lengthy, detailed and elaborate medical history, along with a history of "doctor-shopping and a deterioration in "doctor-patient" relationships. Frustration and anger on both sides. are common.

[Shion]

Yes, now everyone with computer access can also suffer from 1st year med student disease.

Intrestingly I just saw a short article on “Münchhausen’s by Internet” where the ability to self-diagnose, combined with immediate gratification of attention and sympathy needs in many available on-line support groups (who don’t question whether one actually has the supported disorder) are powerful motivation to consider oneself ill.

Heck, I almost bought it. I was convinced I had hypothyroidism. Clearly had every symptom available. Turns out I was just lazy and eating too much, and diet and exercise fixed everything right up.

[Scythian]

Morgellons Disease

Robert C. Bransfield, M.D.

Red Bank, N.J.
Article

I am pleased to see that in the December 15, 2006, issue, Psychiatric News drew attention to Morgellons disease and that the excellent article gave sound advice on communicating with delusional parasitosis patients. However, I would like to add comments about the distinction between Morgellons disease and delusional parasitosis.

I've evaluated and treated Morgellons patients, spoken with researchers and other clinicians who work with these patients, read the limited literature on the subject, and reviewed a database of 3,000 Morgellons patients. The Morgellons patients I have seen had surprisingly similar symptoms, with an abrupt onset, often following a toxic exposure. Before the onset of their illness, these patients' mental status appeared to be quite representative of the general population, and some (including physicians) were high-functioning professionals. The condition appears more common in nurses, teachers, and in family members in the same household, which suggests a contagious component.

After the onset of the illness, these patients report surprisingly similar symptoms. They have a combination of bizarre dermatological sy mptoms, cognit ive impairments, mood disturbances, and sometimes paranoia and suicide attempts in later stages of the illness.

Their symptoms are not compatible with schizophrenia, bipolar illness, substance abuse, or other recognized causes of delusions. When patients complain of fibers protruding from their skin, examination with a low-power digital microscope can visualize and photograph the presence or absence of these fibers. In addition, many Morgellons patients test positive for Lyme disease. The mental symptoms seen in Morgellons are similar to those of other chronic general medical illnesses with psychiatric manifestations, since the mental symptoms fluctuate in a pattern similar to that of the general medical symptoms; and this suggests that the mental symptoms are probably associated with immune and/or toxic effects upon the brain.

When these patients are treated with modest courses of antibiotics, their dermatological and psychiatric symptoms often show significant improvement. Without a thorough assessment, Morgellons patients are commonly given a diagnosis of delusional parasitosis, resulting in a delay in proper treatment. Whatever Morgellons is, it is something very different and unique and should be considered as a condition needing further study and possibly listed in the next edition of the DSM.

In summary, Morgellons disease and delusional parasitosis are two distinct clinical entities. Morgellons does not appear to be an imaginary or delusional illness and merits the research effort that we see with any other emerging and serious illness.