Morgellons Disease continues to defeat scientists

[posey]

Morgellons Disease continues to defeat scientists

Burrowing bugs, delusions or a nervous disorder? Why can't medical scientists get to the bottom of Morgellons Disease.

By Will Storr
7:30AM BST 11 Jul 2011

Nick Mann was convinced that something was burrowing into his skin. The 48-year-old father of two had been for a walk in the beautiful grounds of Abney Park Cemetery, down the road from his home in Hackney, east London.

It was sunny and he'd been wearing shorts and sandals. That evening, his legs began itching. Marks sprang up all over his body. "I just knew something was on me," he remembers. "Something digging or biting into my skin."

Over the coming days, lesions opened up on his body. Running his fingertips over them, he could feel something inside: it felt like spines or fibres, he says. He began to feel tormented. What were these bugs? How many were there? Would he ever be rid of them?

One afternoon, in desperation, Nick stripped naked in his kitchen and determined to dig one out as soon as felt it 'bite'. "I stood there for three or four hours, waiting," he says. "As soon as it did, I went for it with a hypodermic needle. There was one on my nipple."

He pales slightly. "You know, I can't get that out of my head. It was so painful. I dug the needle in and felt it flicking against something that wasn't me. And I just carried on digging and scooping." It took nearly four hours. "At one point my wife came in and saw blood dripping down my leg."

By the end of the afternoon, Nick had dug out three of the mysterious entities from his body. They were so small, he says, you could only see them when they moved. Having managed to transfer them into a jar, he proudly showed his wife. Karen peered into the pot. She could see nothing. Nick, however, knew he was on the verge of discovering what this strange and maddening condition was.

It was back in 2001 that the first modern-day reports of a mysterious "fibre disease" began to emerge from the US. When Mary Leitao's two-year-old son complained of "bugs in his skin" and subsequently broke out in lesions, the worried mother examined him with a toy microscope.

Under the lens, she found bizarre, many-coloured fibres. Leitao christened the condition Morgellons Disease, after a similar bizarre outbreak of "harsh hairs" on children that was reported in the 17th century.

She was compelled to name it herself for a simple, but surprising reason: doctor after doctor dismissed her concerns. They said she was neurotic; that it was a figment of her imagination.

A decade later, Leitao's Morgellons Research Foundation claims to have been contacted by more than 12,000 families from all over the world. All of them claim to have the itch, the lesions and the fibres. But the vast majority of sufferers had been dismissed by medical professionals as being mentally ill, with a condition known as Delusions of Parasitosis, in which sufferers are falsely convinced that they are infested.

Despite this, in 2006, there was enough pressure put on the American government for the Centers for Disease Control and Prevention [CDC] to form a task force to look into the matter. "We're not ready to concede there's a new disease," a spokesman said at the time. "But the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it."

One of the few academics to accept that Morgellons might be real is Randy Wymore, associate professor of pharmacology at Oklahoma State University. "I thought it sounded crazy," he remembers.

"I knew it was thought to be delusional, so I asked some Morgellons sufferers to send samples of the fibres, figuring if it was delusional, they would never show up. But 48 hours later, Fed Ex packages started arriving. I borrowed a microscope to examine them. And they looked a little odd."

Wymore asked agents in the forensics department of the Tulsa police department for a second opinion. "Within about 30 seconds, one of them said, 'Uh, I don't think I've ever seen anything like this'."

The fibres didn't match any of the 85,000 organic substances they had on their files. "I was both shocked and not shocked," recalls Wymore. "I already thought these fibres were kind of unusual, and this just validated it."

Wymore has now been working on the DNA of the fibres for five years. So far, none of the samples he has sent into the laboratory has proved to be anything mysterious. Results have included nylon, cotton, a human hair, a fungal fibre and a rodent hair.

Yet more evidence that Morgellons patients are merely delusional? World-renowned neurologist Dr Anne Louise Oaklander is not so sure. Oaklander, an associate professor of neurology at Harvard Medical School, is an expert in itching. She believes that sufferers might have developed nerve disorders that are being misdiagnosed.

"Morgellons is not a disease with a unifying cause, but a constellation of symptoms that can be caused by different underlying diagnoses," she says. "In my experience, these patients have a severe itch disorder that's unexplained, and because itch is the sensation that we feel when an insect lands on our skin, or grubbing about among the hairs of our body, these patients make a logical conclusion: which is that there must be insects here, causing these insect-like sensations."

She explains that the brain can mistakenly experience the feeling of insects if the nervous system was damaged following shingles and sciatica, or by the growth of spinal cord tumours.

"What often happens, though, is a physician does not find a skin disorder, so jumps to a psychiatric conclusion. But what they should be doing is looking for underlying neurological explanations."

So what all does this mean for Nick Mann? Are the fibres in his skin real? Is he delusional? Or does he have an undiagnosed nerve disorder?

In fact, Nick turned out to be an extraordinary case. While it's common for GPs to diagnose patients claiming to suffer from unexplained itching as delusional, this was unlikely in his case, because Nick himself is a GP.

"I took the three mites I'd caught to our local Homerton Hospital," he says. "A technician mounted one on a slide, put it under a microscope and said 'Beautiful'. Everyone gathered around saying 'Ooh, look at that'."

It was definitely something. But they didn't know what. "They sent it to the Natural History Museum, which identified it within a day," says Nick, "as a Tropical Rat Mite."

Although museum experts doubted the mites could live on the skin, the GP has no doubt that is what they were doing. "What these mites do is go in through the hair follicles and find a blood vessel at the bottom. That's where they sit and that's what the 'fibres' are – their legs folded back."

Nick, who treated himself with an antiparasitic drug to eradicate the infection, can only guess that he picked up the mites walking in the cemetery. Despite the name, they are not exclusive to hot climates.

Nick believes it likely that many patients who claim to have Morgellons are actually infected by Tropical Rat Mites. However, he agrees with Dr Oaklander that this diagnosis is unlikely to explain all cases. "There doesn't appear to be a single explanation for it," he says.

Perhaps the mystery will finally be solved when the Centers for Disease Control release their report. Currently in the peer-review process, publication is thought to be imminent.


Causes and cures: starting from scratch

Itching is a common symptom but can be severe and frustrating. It can be localised, or all over the body and there are numerous causes and various treatments.

Causes

A non-infectious skin condition – eczema, psoriasis or prurigo (fluid filled blisters).

Allergies – nickel, medication, washing powder, cosmetics or food.

An insect or parasite – bites, scabies, head lice, bed bugs or ticks.

Fungal and viral infections, such as measles, athlete’s foot, ringworm and thrush.

Chronic conditions

Some types of cancer, thyroid problems, hepatitis and liver disease.

Hormonal changes in the body during the menopause and pregnancy.

Diagnosis

Visit your GP for a diagnosis if your itching is severe, prolonged or recurring. Seek medical advice if itching is associated with other symptoms, such as breathing problems, inflammation or yellowing of the skin and eyes.

A physical assessment may be able to determine the cause of the itching, but your doctor may

also carry out a blood test, skin scraping, swab or biopsy to diagnose the underlying cause of the problem.

Treatment

Treatment will depend on the cause of the itching. Bathing skin in lukewarm water and avoiding skin irritants, such as certain fabrics, tight fitting clothing and perfumed cosmetics.

Medication or creams may be prescribed. Antihistamines may be advisable for insect bites or if an allergy has been diagnosed.


For more information, see, CDC - Unexplained Dermopathy - Home

Morgellons Disease continues to defeat scientists - Telegraph

[posey]

Rat Mites? He doesn't say anything about biofilm but whast do you think about what he says the fibers are; bent back legs of rat mites. I don't think so.

Could be a GP (General Practice DR.) who wants to save his job.

[Ahopeful]

Interesting - do you have the source of this article please?

The author is he who wrote the Guardian article on M.

Ok, good for raising awareness, but for someone with such a clear interest, he frequently mentions delusions as a possible cause.

I have these symptoms and last year lived in Hackney, mentioned by the case study in the article.

edit. Oh, source is the UK telegraph. That's 2 nationals covering it in as many months (oth written by Storr with similar quotes). Can only be a good thing.

[tcmgpt13]

I do not think the doctor (Oaklander, who is a neurologist at Harvard, is hardly a GP out to save her job) or the patient were saying that every case of M would have the same cause.

Quote by Nick found in your article:

Nick believes it likely that many patients who claim to have Morgellons are actually infected by Tropical Rat Mites. However, he agrees with Dr Oaklander that this diagnosis is unlikely to explain all cases. "There doesn't appear to be a single explanation for it," he says.

IMO it is quite probable that there are many parasites and diseases out there causing many of us to have similar symptoms of lesions and fibers too. I think this may be what was found in that M CDC study we have yet to see.

I think it's great Oaklander thinks there could be a neurological reason for some people's symptoms. She does not simply join the crowd of doctors and call all of us crazy or DOP. Quite refreshing. I wonder if she has ever been invited to the annual Morgellons conference?

quote=posey;82012]Rat Mites? He doesn't say anything about biofilm but whast do you think about what he says the fibers are; bent back legs of rat mites. I don't think so.

Could be a GP (General Practice DR.) who wants to save his job.[/quote]

[belle9]

TCM,
The article states that Nick, the patient, is also a GP. I have parasites much like Nick but I also have fibers and all the other weird symptoms associated with M. So did I understand that Wymore thinks we are delusional because the fibers people sent himn were materials he knew? Perhaps he should take some directly from patients then.

[posey]

Thank you Belle9, that is what I meant when I said a GP out to save his job and not be accused of being delusional. Many Drs. and Nurses have lost their jobs while claiming to have Morgellons.

I was seeing a Nutritionist and she told me that she thought M was real, but she didn't think it was from a virus, bacteria, fungus, etc. She thought what people were feeling was due to their nerves. I quit seeing her. I know this is not just nerves. It isn't nerves coming off of my body.

As far as the Rat Mite goes, it may be involved in some. Here is a search link for some pics of them. Notice the ones with the red dots, or the one in the 4th row called ... Bugs): Fast Little White Bugs in Bedroom, bird mites, nuisance pests614 x 550 · 39 kB · jpegen.allexperts.com

rat mites - Bing Images

From article:

In fact, Nick turned out to be an extraordinary case. While it's common for GPs to diagnose patients claiming to suffer from unexplained itching as delusional, this was unlikely in his case, because Nick himself is a GP.

[tcmgpt13]

Sorry, I missed the GP in the discussion--comes from skimming long articles too quickly. LOL

I think Oaklander has some interesting points though. Why for instance do I have lesions but seldom have itching even though I have seen moving parasites? There has to be some neurological trigger that for some people that builds to intense itching. Yet others, like me, are not as affected. There is probably some neurological component involved for some though of course I do not believe lesions are caused by itching. I do not discount that in those folks who have intense itching that there are also parasites involved or even other reasons for lesions and itching to occur. I think that having a doctor who specializes in the neurology of itching who is at least not calling those with Morgellons symptoms DOP is a start. She seems to be a very conventional doctor and that's how opinions start to turn around in the medical field. She is also firmly on our side when she says that dermatologists are not qualified to label anyone DOP. This information was in the other recent news article in UK. I hope we have more conventional doctors turn around and start accepting that this is not something which is just in our heads. True, she needs to go further in her thinking, but it is a breakthrough to have a doctor with her prestige say M is more than just DOP. Then some conventional doctors may eventually take note and become more open minded about M.

It is weird Posey that Mann does not mention any film or goo, but again I do feel that we all have different reasons for much of what we are experiencing. Perhaps he has none himself? Differences in M symptoms are not unexpected as after all Harvey himself saw that people tested positive for different parasites and different infections. Any commonality to M still remains out of reach for us and I suspect for the CDC as well.

Anyway I am glad that Mann and Oaklander are both keeping an open mind about what they are seeing. Hopefully Mann will be able to have other samples from other M patients actually studied rather than dismissed automatically by the medical profession in UK.

Belle, I don't think Wymore believes we are delusional or he would have quit studying M by now. I think perhaps he is too focused on what is occurring outside the body rather than also looking at what is going on inside. Both areas have to be studied, but of course funding is still quite limited. In all cases (Wymore, Mayo clinic) I do feel that having people send in samples rather than collecting them scientifically by having the researcher directly remove them from the patient cannot in anyway be considered a valid study of fibers. The Mayo clinic study is laughable. As Belle's doctor said it was a very poorly constructed study, if one can even call it that. This is no doubt why the other doctors listed on it had that a student with a B.S. degree listed as the first person on the soon to be published study. She just got her M.D. this spring and I think she will be extremely sorry someday that her name is listed first on that study.

[Janice]

I can not believe that we don't all have the same thing. Different bugs, depending on your locale, but the same thing. We may have varying degrees of it, but the same thing for the majority of us. I absolutely do not think it is some kind of neurological disorder. That's crap as well.

[tcmgpt13]

Since neurological symptoms have been discussed by some people who have Morgellons, I do believe that there is some validity in approaching some of our symptoms from that direction. Whether we like it or not, M does affect the nervous system especially if the lyme connection turns out to be a part of the picture for most of us. Skin itching in general is very poorly understood in dermatology so I am glad at least one doctor in the world has taken up this type of study. Perhaps some relief will be found for those who do suffer itching disorders in general, even for those who suffer from M and also have a lot of itching which accompanies it. Not everyone with M has severe itching. I would like to understand why some M patients do and some do not. BTW I also do not have many crawling sensations on the surface of the skin either except when I see some parasites in the lesions. Some crawling sensations I used to have seem to have been associated with the reactivated viral infections which are much better since I started using a small dose of gabapentin. Many though seem to frequently experience crawling sensations on their skin. Is all of it associated with a viral infection? Or something else? Do we not need to understand why?

If there is a common denominator we do not as yet know for certain what that is. Perhaps there is a common blood parasite. Or a common lymphatic one. Or a disease organism. Only scientific study can give us any valid answers. Unfortunately, with the lack of study that exists now, it appears it will be a very long time before we learn much we can declare as the cause of M.

[Ahopeful]

How true tcm. I repost below my comment on the telegraph, just for interest. Sorry its a bit long.

...

This article clearly shows that not everyone suffering from chronic
unexplained and undiagnosed pruritus is psychotic.

Rather it highlights what they need to do to be taken seriously by the NHS: an ability to self diagnose, a will to self mutilate, luck to find the mite and laboratory contacts to run tests for free. Oh and you have to be a doctor.

Because MARK MY WORDS if this man did not have all or most of these qualities - he would have been prescribed moisturising or perhaps antibacterial creams, antihistamines or at a push a scabies cream, although he had classic no scabies symptoms.

Further, if he had persisted in bothering his GP he may have achieved a dermatologist referral who after a several month wait would, with
cursory examination, have labelled him as having 'delusions of
parasitosis' (DOP) and recommended low dose anti-psychotics if there
was no improvement.

Imagine. A previously entirely healthy professional man, stricken by
tormenting itch, and to add insult to injury, a medical community
that would have disregarded his symptoms and compounded his misery by questioning his sanity. Its seems insane that our society could do that. So quickly, so easily. And yet, this is almost certainly
exactly what would have occurred had he not digged that mite out of
his own leg with a syringe needle.

Is that right? That the medical profession is so ill equipped to deal
with these types of cases (that is of unfamiliar parasitosis or
chronic itch)?

I think this man Dr Mann is very lucky to have been spared that
humiliation. But think about the hundreds who could be suffering
similar fates across the country.

And why wouldn't there be? Is he the only man in the UK to have picked up this tropical mite in Hackney? I wonder... A mite that is previously not considered to be able to live on humans skin. That according to the text books would not even enter most GP's nor even most dermatologists minds to consider.

I wonder if picking it up from the number 73 bus or the Victoria line (650,000 ppl a day) isn't more likely if we have established that it CAN live on and burrow in human skin.

Is he the only one in this or a similar case? I doubt it. Very much so -
but I imagine he may well be one of the lucky few to get a correct
diagnosis. The others - well, good luck with those antti-psychotics!

Indeed the scenario has led to suicides in several instances, and who knows how many lives destroyed across the world.

Morgellons UK has hundreds of people registered from across the UK.

Further, a great many sufferers claim not to witness 'fibres' yet whose
(previously entirely normal, family) lives are turned upside down by
the sudden an inexplicable pruritus (that means itch).

I would also add that feeling itchy is not a very sexy condition, and
so no doubt many are isolated and have perhaps not even shared there problem with close friends collegues or families despite their
anguish – fear for of the STIGMA of either DOP or morgellons.

That an internet meme is the only, and initially assumed cause for
'morgellons' is deeply deeply arrogant. Many many 'morgellons'
victims are just people like you and me, stricken by an unknown
condition and trying to make sense of it. Morgellons is certainly
"real". Do normal healthy professional function members of
the society simply develop these symptoms for no reason.... From
reading!? No – they feel these new sensatione like Dr Mann did,
then they read and try and self diagnose when their doctors fail
them.

But what is the cause of the itch? Have GPs in the UK seen a surge in
pruritus cases for example? Is there a geographical grouping perhaps,
an age range perhaps or common medical histories to link these cases?

We don't know. And also, we don't care. The DoH says only on the matter of 'morgellons' that they will wait for the CDC. Imagine. Did we wait to hear what the CDC said about vCJD?

The DoH should at least be looking at monitoring reports of unexplained dermatitis or pruritus. This mite lives on humans, but every student in the county is being taught they don't. What arrogance would label fully 15,000 people reporting strikingly similar symptoms as delusional without an actual study?

Perhaps it was the one that would refuse to accept the idea that H.pylori could cause stomach ulcers. Or the one that took perhaps some decades to characterise HIV. Or which initially refuted the existence of prions. What did we learn from these episodes? Look to how we respond to 'morgellons' for the answer.

You see, new human illnesses do emerge. Further, our environments change, creating new infection routes and opportunities, or perhaps new weaknesses in our own immune systems. Medical practice must follow suite.

Only a huge arrogance would deny these facts. It's high time someone in the DoH, HPA or NHS sets some policy on this. At the moment, the
speculation is rife, and Gps themselves are left in limbo and with no
clear idea on how to respond to patients.

Medicine, modern medicine, sometimes claims to be based on science. But there is not much evidence of that here.