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Parasitic Infection Flummoxes Victims and Doctors
Toxictoy writes "Imagine having a disease that is so controversial that doctors refuse to treat you. Individuals with this disease report disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking feature of this disease. In addition, patients report the presence of seed-like granules and black speck-like material associated with their skin. Sound like a bad plot for a Sci-Fi channel movie? Think again - it could be Morgellon's Syndrome."
Yep.
i s many years ago on a medical radio show.
Heard about this http://en.wikipedia.org/wiki/Delusional_parasitos
J.K.
This is referred to as "delusions of parasitosis".
http://www.emedicine.com/derm/topic939.htm
The *sensation* they have is "real", not to sound like Morpheus: feels like bugs in skin. The sensation goes away quickly when Pimozide is prescribed.
It's not all that uncommon.
It's very hard to convince patients that they need Pimozide, and not a can of "Raid" to spray on themselves.
There's another web site that has been around longer relating to the same issue:
http://www.skinparasites.com/
They misinterpret lint, fibers, dust, and other debris as parasites; sort of a variant of hearing voices/OCD/other disorders where sensations are spurious or can't be correctly decoded.
The success will be similar to what dermatology proper can achieve anyway. Modern dermatology cannot cure eczema. Most varieties of psoriasis are uncurable as well. Add in neurodermatitis and a few other skin conditions and you get a fairly long list of conditions which the doctors cannot deal with. They poke at it from different angles like tribal shamans and the success rate is about the same. The reality is that we know so little about the human skin, it is not even funny. Just take Pimecrolimus and eczema. Nobody has even the faintest idea why it works. Staph and eczema? What is the cause and what is the effect? So on so fourth. I read the RTFA and I can understand some of the patients described in it who are taking a gun to a dermatologist appointment. I have wanted to do that on couple of occasions myself.
Baker's Law: Misery no longer loves company. Nowadays it insists on it
http://www.sigsegv.cx/
I think it's a viral campaign for an upcoming Robert Downey Jr movie ... :)
The *sensation* they have is "real", not to sound like Morpheus: feels like bugs in skin.
Yes, this is (IMO) one of the more bizarre aspects of psychosis - it's not just the the people suffering from it *believe* in things that aren't true, they actually experience some of them directly.
I've known a couple of people with schizophrenia, and while it's a terrible condition, it gave me a lot of respect for the power of our minds.
"...always new atoms but always doing the same dance, remembering what the dance was yesterday." -Richard Feynman
What's the difference between a medical student and dog crap?
No one goes out of their way to step on dog crap.....
You are quite correct--best to get an EKG/watch for extrapyramidal side effects, but, I have found that very low doses of Pimozide are effective, on the order of 1 or 2 mg a day, not a full antipsychotic dose.
Most difficult therapeutic maneuver is building trust--not at all easy to get them to take anything at all. I just try to be very honest, reassuring, kind--sort of like Mr. Rogers.
UCLA Med School: awesome....congrats.
Step 1: Get a written statement from one, two, or perferably, three GP's or dermatologists you have an undiagnosable skin condition or other aliment that is not psychological in nature.
Step 2: Get a phone book or google and find out the nearest university medical research center in your geographic area.
Step 3: Armed with the affadavits in Step 1, contact professors at the university specializing in pathology, dermatology, biology.. just about any -ology except geology, or phrenology, haha. You might have to try a couple, but you WILL find someone interested in your case. Those people have the training, resources, and credentials to find out if there is something novel about your condition. They will pay you no mind without Step 1.
Good luck.
..don't panic
I think what you have there is a case of MSP -- Munchausen Syndrome by Proxy.
It is an actual condition - it's called schizophrenia and this is not an uncommon symptom. Try reading the message board http://lymebusters.proboards39.com/index.cgi?board =rash where Morgellon's sufferers describe their symptoms.
I've noticed that at least one of the supposed links are dead. As for how they got the media to buy in ...
:)
The wikipedia article was created in Feb of 2005. It contained a one-sentence summary and a link to the website. The website is registered by a dns proxy company, so there's no DNS contact information. Ooh, another bizarre coincidence - the supposed "national news broadcast" has been postponed until "june or july"; release date of the movie is July 7th. When looking at it in a paranoid mindset, lots of things on the site are curious. Including the DISTINCT lack of decent contact information. I've found only a few email addresses so far. Ironically, the only person whose domain I've been able to nail down as non-anonymous is the supposed webmaster. And his site is cheesily amusing in its own right.
The Scanner Darkly had its recent release date, September 16th, pushed back to some time in March, 2006." - as you can see, it's been bumped around a fair amount.
Taurox has been evaluated by homeopathic experts and is registered with the FDA.
Homeopathic experts?!?
Call Sharon now and use the following Code Number and because we are people "greatly in need," you get an additional 15% discount off of the price.
Right, and who gets a cut from this "Code Number"? Note that the person was already "80% better" (from standard antibiotic treatments) before the miracle of Taurox entered the picture, apparently providing that last 20% boost for the "fatigue" that remained after the mainstream treatment.
And the very odd thing is that the Morgellons Research Foundation site has no mention of Taurox at all.
There is a Morgellons Foundation and they give out big grants. One of the Pharmacology professors at OSU-HSC received one of the grants to lead the research into the "disease." I've been in the academic world a long time and haven't run across too many professors who would turn down a pile of money to research a little known disease. Randy Wymore happens to be a really sharp guy too, I think he's mostly trying to keep an open mind about it, but so far it looks like the craziness that we assume it is.
----- Protect your rights, join the eff
Modern dermatology cannot cure eczema.
I've cured my own eczema enough that it doesn't bother me for about 10months out of 12. How? Its a selection of things, but the worse problem for mine was when the air was humid it would go mental.
Also im alerigic to ALOT of shampoos, conditoners and clothes treatment stuff.
Problem is the world doesn't have any time on its hands to find out what causes the problems, so it never knows WHY it has this problem. If you want to stop your excema do as i did, keep an diary and think carefully of what you've eaten, done, where you have been, what your wearing, when were those clothes last washed?
I find the longer i leave my jeans unwashed, the less problems they cause me!. Why this is im not sure but it works fine, i just spray them down with some Kleezne stuff to make them smell normal (not that they need it really).
Nylon causes me no end of problems due to my skin sweating, causing it to get worse.
Dont RUB your skin dry, pat it instead or getting a toweled dressing gown and wear that and just let your body air dry, its far nicer on your skin.
Good luck!
- http://www.milkme.co.uk
Sounds very similar to what I did to cure mine. Avoid all shampoos with parfum/perfume, same with soaps and the like. I use a dead sea mud soap which my skin loves and it kills my fungal psoriasis dead. I also use Pears transparent soap on my face and let myself dry in a towelled dressing gown. As a result my skin is in the best state its been in, in years. My dermatologist hadn't the time to be arsed, so I did this all myself with trial and error like the above poster.
Leprosy is curable with antibiotics.
Doctors and medical researchers, like those in any other scientific field, have been taught a certain paradigm for understanding health and disease.
Yes, and that paradigm is: Examine the evidence.
Anything not explainable within that framework tends to be overlooked or ignored
Yep. When there's no evidence, doctors and medical researchers tend to ignore you, as do scientists and indeed all sane people.
just look at the battles the homeopathic community has to fight; some of them are wackos perhaps
And the remainder are frauds.
but many of them have treatments superior to those of "modern" medicine.
No. Modern medicine can provide sugar pills and distilled water just as well as any homeopath.
Leprosy is dead easy to cure nowadays. At the most it will take a few months of a very simple oral treatment.
The number of cases decreases roughly 20% / year.
Regarding tuberculosis, there currently are multi-drug resistant strains that are indeed problematic. As usual these arise from the poor supervision of medications at a time where the consequences weren't understood.
Apart from that I'm in full agreement with your enumeration.
May contain traces of nut.
Made from the freshest electrons.
As compared to the ridiculously small amount of chemicals that accumulate in "organic" food, perhaps? Everything material is "chemical", all matter is composed of chemical elements. It's ridiculous to assume that a chemical compound is automatically suspect of being dangerous if it was produced in a human factory instead of a plant or animal in nature.
Think of all the extremely toxic chemical compounds found in nature: snakes, spiders, scorpions, mushrooms, salmonella, botulism, anthrax. Think of curare, strychnine, nicotine, nature produces many toxins that are more dangerous than the most mortal chemical weapon of mass destruction man has invented.
I was similarly affected for years with unexplained rashes, but I was lucky: I have a chemistry degree and I ran into a couple of good allergists while I was in the Air Force.
The doctors discovered I was allergic to propylene glycol and sulfa. Those two are in virtually every shampoo and body wash out there. Both physicians stressed that these are common allergies.
I wonder how many unexplained rashes are actually perfectly common reactions to the sulfa found in anti-bacterial products and soap. There's a *reason* the medical community doesn't prescribe sulfa drugs the way it used to--a lot of people had reactions. Propylene glycol is in everything--including topical applications of medicine and *salad dressing*. Although most people don't have a reaction, there's probably enough people out there who do, to explain rashes that don't tie themselves to a particular product--because the same chemicals are used in almost ever product for skin and hair, and just the fragrance changed.
Everything you say is good up until here.
3. Society in general and the marketing departments of various household goods: all of the various soaps & cleansers which promise to kill bugs when you use them. You're only supposed to use soap to clean your hands off - remove the stuff which doesn't belong there - remove as in get it off of your hands, not kill some of the bugs and leave a small number of immune ones in place. Eugenics takes over and we begin breeding superbugs.
Antibacterial soaps are a marketing ploy and nothing more...all soaps are antibacterial. How well a given soap removes bacteria from your hands is directly proportional to how well you clean your hands (i.e: do you just get them wet, or do you really soap up and scrub them down). Bacteria aren't some magical things that can survive the same conditions that will remove dirt, grime, oil, protein, salt, and metals from your hands. Some companies throw in a little bit of antiseptic to get people to buy their soap, but it is no more or less effective than regular soap, and at the concentrations present, it is highly unlikely to cause resistant bacterial strains to develop.
Been there, Done all that. All wonderfull british carpets are out of the house, no pets, no allergenic plants, household chemicals are vetted for use and taken off the list of allowed stuff at the slightest suspicion, the house is vaccum cleaned at a frequency which makes all my friends think I am mad. On top of that, the horsepiss supplied by UK water companies under the name of "water" is filtered and treated for the entire house. All of this made the situation better, but did not solve it completely.
Interesting to hear this from an almost ready British MD. None of the really effective ones are available on NHS in Britain and the best ones are not even on the allowed import list so I have to ask friends who go to Germany, France or the third and fifth world to buy them. More specifically Trixera is not prescribable and Linolafet, Atoderm and Topyalise series are not on the import list at all. You cannot buy them even by mail order (so much for the common EU market).
The effective ones (Prednisolone and Co) cause obesity, behavioral changes and learning difficulties in prolonged use. The ineffective ones - well they are ineffective.
This one does work for a short period. After that the organism adjusts its immune responce and there is no more effect. To add insult to injury, I had to go to a fifth world country and the "village" dermatologist in a small city in the middle of nowhere knew about it. None of the clowns I had to deal with in the UK even considered it. One consluttant in BUPA knew about it, but it took me mentioning the third world village dermatologist to get this to be even considered.
As they say this in the UK - utter bollocks
Aaaa... That explains it... NHS doctor in the making... As my wife nowdays says about Green Wing: not funny, this is not a sitcom, it is a documentary.
P.S. By the way, it is my kid who got eczema, not me.
Baker's Law: Misery no longer loves company. Nowadays it insists on it
http://www.sigsegv.cx/
Your comment is funny, but I have to speak up personally here as it concerns me this particular epidemic is not being taken seriously.
My mother, now in her mid 50s, has been suffering from something precisely like this. I say "something", because she has received absolutely no help to date from the medical community. Dermatologists tell her it is all in her head, and it has made her life completely miserable. Just looking the scarring all over her face, I find it a violation of the hypocratic oath that she is told it is all in her head. She's had it three years and is a teacher (which along with nurses is the #1 group that has this).
I know we all want to think this is just a joke, but consider this your two degrees of seperation from a sufferer.
What's worse is that the CDC is pulling a Katrina with this one and just waving their hands, hoping it will leave them alone.
As a grad student studying infectious disease microbiology, I'm really quite skeptical of this disease. Thus far, several things bother me:
1) Failure to confirms Koch's postualtes. Without going into detail, these postulates allow us to confirm if an infectious disease s caused by the suspected agent. No attempt has been made by the foundation "scientists" to confirm these postulates.
2) Fibers look sketchy. More specifically, they look like carpet fibers under a microscope. One of the webpage claims they are not by using autoflorescence microsopy. Wrong technique. To disprove the carpet fiber claim, they need to run a mass spectrometry-based technique such as MALDI-MS, LC-MS/MS or even old-school mass spec. That would disprove fibers and electron microscopy would go a long way to illustrating what, if any, pathogenic structures exist within the "fibers".
3) Lastly, if this is a parasitic infection, the use of broad spectrum antibiotics is unlikely to help. Antibiotics are designed against specific bacterial protein and carbohydrate targets. Parasites, by the classical definition, are eukaryotic (ie not bacterial) pathogens and are unresponsive to antibiotics. Previous posters are correct in stating that there are many drugs we don't know how they work; most of these are designed against eukaryotic pathogens that possess vastly more complicated biologies.
In short, I'm skeptical, but open to new evidence with better techniques.
True, but the post you are responding to does have a valid point. The "antibacterial" soaps have ingredients other than soaps and synthetic detergents (primarily triclosan) which have specific antimicrobial properties. Soap and synthetic detergents (commonly Sodium laureth sulfate in hand soap) are antibacterial in rather gross and non-specific ways: they bind both water and lipids, and so disrupt cell structure physically by breaking down cellular membranes. The greater toxicity of soaps to bacteria than the people they are stuck to is largely due to the fact that the human cells involved have more complex membranes and are generally already dead and hardened with protein, and they provide an armor of sorts. Immerse any living human cell in soapy water that would kill a bacterium, and the human cell will die just the same.
Triclosan is believed to be more toxic to microbes than people because it disrupts critical bacterial enzymes that humans simply do not have. The flip side of that is ugly: mutations in the genes coding those enzymes can result in Triclosan-resistent bacteria. So we are awash in Triclosan-containing soaps and even toothpaste which may be killing off some small increment more bacteria than if we didn't use it in soap, and flushing the stuff down our drains, some getting there by way of our guts. Is it killing off bacteria we want to keep around? Maybe. Is it creating an environmental pressure for the evolution of Triclosan-resistant bacteria? Definitely. This is a particularl;y bad thing because Triclosan is used in stronger concentrations in medical disinfecting. Pervading the environment with the stuff means that we have this huge breeding reservoir for a resistant strain, and we'll know it exists when it makes its way into hospitals that rely on Triclosan...
And the stuff might not be as human-safe as once thought. Ignoring the issue of effects on symbiotic bacteria, Triclosan may well disrupt some human enzymes, just not the obviously critical one it hits in bacteria. Anyone who claims a solid answer to that mystery is probably selling some variety of snake oil (either "long-acting toothpaste" or "detoxifying herbaceuticals" or "cutting board disinfectant" or "colon cleansing")
I also have late stage lyme.
I can fully attest that you can give many doctors more information about what's happening than they can ever image getting from a patient, and still have them tell you it's all in your head.
To be blunt, if you've never been in this sort of situation before, you don't have the slightest clue about what you're talking about.
As for lyme disease specifically, it's very, very well known that the tests for it are horribly inaccurate. Even worse, if you do get a positive result, the doctor probably doesn't have a clue about antibiotic treatment of a neurological condition and making sure that the abx can get past the blood-brain barrier. (ie, your chance for a correct diagnosis is slim, and your chance for correct treatment is even slimmer.)
Not unless they got Popular Mechanics to back date a fake article to June, 2005.
So, apparently the hoax and viral marketing theories are both out the window, unless it's a hoax that's been years in the making.
Clear, Dark Skies
"Antibacterial soaps are a marketing ploy and nothing more..."
Not entirely if you live in the US. Antibacterial labeled soaps are FDA regulated. This is defined more or less under the 1938 Food, Drug, and Cosmetic Act.
If soap is advertised as just soap or a clensing agent, nothing more, it's not under FDA regulation, even if it contains additional antibacterial compounds or perfumes.
If you call a perfume, or what not, it's considered a cosmetic and falls under whatever regs apply as decided by the FDA.
Similarly, if you label it antibacterial or antidandruff or antilice or something, it is considered a drug. Then, at minimum, the ingredients must be listed on the product. Not so if you just call it plain "soap." Also, I believe additional regulations come into play, such as showing some level of efficacy of the product (which may or may not be actual for real life use), which in turn most companies then DO add additional compounds to the soap to meet those regs and then add that ingredient to the label.
"all soaps are antibacterial"
I agree given the nature of what soap is or does.
But it needs to be noted that some companies label their soap products anyways, even if it is not required. If you compare the ingredients of many major soap brands that are labeled antibacterial versus the same brand that is not labeled antibacterial, you'll usually see a difference in their formulation.
For example, triclosan is added to many antibacterial soaps. It is antibacterial, but a rather useless one; it has like a 12 hour span before it starts to act (bacteria start to die and even then not in large numbers). Which, for an antibacterial, is sort of stupid given what your hands, face, or body will acquire in those 12 hours of normal life.
I appeared to be somewhat allergic to triclosan and avoid most soaps labeled antibacterial.
CP nitric is expensive, and stains your skin -- as you no doubt know. Doctors used to use trichloroacetic acid (I don't know what they use now) but before that, they used simple hydrochloric acid, aka muriatic acid, available at hardware stores for paint stripping. One interesting thing about HCl is that it differentially stains the tissue infected with HPV, for reasons I've never heard anyone discuss, but it's how they mark lesions when treating cervical cancer. (Yeah, basically, they fill the woman's cervical area with hydrochloric acid. Lovely, huh?) If I were doing this at home I don't think I'd neutralize it for several hours because that'll allow the HCl to penetrate. The problem is that HPV has significant vertical development in the skin, so just hitting and killing the top will make it go away for a while but not permanently. What it actually does is signal (through damage) the immune system that something's wrong there, and the macrophages that penetrate into the area to try and fight off infection end up killing the adjacent, infected cells, and eventually that serves to make the wart spontaneously go away. The average time for spotaneous remission is about 7 years, if I recall correctly from my virology classes. But, yeah, use HCl and it doesn't have to be anywhere near commercially pure. 20% would probably be just fine. There are actually good reasons for using dilute materials -- the reason that rubbing alcohol is 70% is not because it can't be made more pure, but because if it is more pure it'll actually clot proteins, like making an omlette, which will prevent it penetrating. Somewhat more dilute solutions can get much more deeply into a bacterial colony. I don't know that the smae thing holds with mineral acids on HPV infections, but it seems a better idea to start dilute and move towards concentrated until you find an effective concentration.
Nostalgia's not what it used to be.
Even more importantly, resistance to triclosan would not be the same as resistance to vancomycin or methicillin, so misuse of triclosan would not contribute to the development of "superbugs".
Triclosan is a topical biocide applied externally in creams and pastes which allow it to linger. Vancomycin, by contrast, must be administered intravenously becuase it does not cross the intestinal lining. The stronger members of penicillin family are also often administered intravenously because most of them denature rapidly in gastric acids. These and triclosan have totally different modes of operation (triclosan interferes with fatty acid production; penicillins and vancomycin interfere with peptidoglycan production in different ways -- the former inhibits a final crosslinking and the latter prevents the incorporation of two subunits). Mutations in transpeptidase (PBP) which may confer resistance to beta-lactam antibiotics like penicillin would do nothing with respect to the organism's potential resistance to triclosan.
With respect to triclosan, the literature is filled with evidence repudiating the Stuart Levy speculative statement on acquired triclosan resistance. Generally speaking, triclosan has been in wide use as a topical biocide for some thirty years and there are no peer-reviewed studies demonstrating acquired resistance with long term use. There are resistant bacteria which either overexpress FabI or which have mutant FabI that does not as readily form the stable ternary compound FabI-NAD+-triclosan. Those bacteria continue to produce enough fatty acids to survive triclosan exposure, but at some cost. Overproduction of FabI wastes energy and the mutant FabIs typically incur an energy or time cost in the production of fatty acids, so these organisms are at a disadvantage in the absence of triclosan.
This disadvantage leads to fewer viable offspring expressing these traits, which in a population causes the phenotype reversion that you mention. (Individuals may kick around in smaller numbers, so that when the population is stressed with triclosan, the population will "de-revert". This happens with a wide variety of toxins.
Triclosan is the focus of occasional health panics for a variety of reasons. Acquired resistance is just one complaint; others are breakdown products, especially into dioxins (exposure to UV), and an almost inevitable but very small amount of polychlorinated dioxins and furans as side effects of produciton. The panics involve either environmental concerns or bioaccumulation in people using products -- whether topical/external (like hand soap) or internal (toothpaste).
However, it's been pretty widely used in the past couple of decades in formulations which allow triclosan to stick around so as to inhibit the growth of microbes which survive washing with sodium lauryl sulphate and other surfactants. There is hardly a poisoning epidemic in evidence... Some people are mildly allergic to triclosan; this is most often seen in people who form mouth chancres (aphthous stomatitis) -- triclosan may exacerbate outbreaks. (On the other hand, mouth cankers are weird things, and there is also some evidence that triclosan may soothe symptoms...)