I'm an engineer/computer scientist who contracted an infestation of Tunga Penetras (commonly known as the "sand flea") in tropical southern Florida in early Sept. 2003. Also probably pertinent to this : I have been diagnosed with Crohn�s disease, an auto-immune disease, since 1994, which means I have a severely compromised immune system; for instance, I�m one of those people who must get a flu vaccination � if I catch the flu chances are that things would get very unpleasant.
I got the (then, to me) unknown bug from a group of unwashed Haitians which I has been kind enough to give a ride to; after they exited my van there were tiny jumping insects bouncing around the van for about week. I was bitten around my ankles 4 or five times that week. Two weeks later the bites turned into boils � looked a lot like slightly infected chigger bites - which started spreading up my body in stages. Every two weeks another 6-12 inches of boils would suddenly appear, spreading ever upwards. The existing boils would either heal and disappear or expand and start to ooze. A few would develop into pea-sized bumps with an 1/8th-inch circle in the center. No OTC remedies could stop the progression. I went to one walk-in clinic and was told I had scabies; to be truthful it did look a lot like the very serious scabies super-infection, with red wavy tracks leading away from sores - the problem was that the tracks were 1/4-inch wide whereas scabies tracks are about 1/16th inch wide. I tried prescription-strength Permethetrin and Lindane to no avail.
In October I moved to the more-temperate Midwest, in part to see if that would help alleviate my symptoms. I went to another walk-in clinic in the Chicago area and was again told I had scabies. This time I was able, in the presence of the doctor, capture one of the offending insects, I also found a couple for myself, which I placed in a small sealed bottle for later inspection. The doctor looked at the bug under the microscope and said that I had a crab-lice infestation and would need to go to a hospital ER, as he wasn't able to treat it in his office. Now, as you can imagine, I had a big problem with his diagnosis - you cannot get an ever-expanding generalized case of open, oozing sores from crab lice.
Nevertheless I dutifully went to the ER and they referred me to a psychiatrist, informing me that _I_ was causing the open sores by unconsciously scratching them, including the sores in the middle of my back and the sole of my foot (and later, inside my nose and mouth and on my eyelid). I informed them I had never scratched anywhere because the sores _hurt_like_hell_ but had never itched. What really torqued me is that I had a dozen quarter- and half-dollar-sized oozing sores with wide, wavy red tracks radiating from and between the sores and the doctors and nurses flat-out refused to inspect them or take a biopsy. I literally begged them to _look_, just take a second and _look_ at one of the damned things, but could not get any of the doctors or nurses to do more that glance at the sores quickly from a distance of 3 or 4 feet away. By the time I left the ER I _was_ a little crazy.
OK, so I've got a couple of bugs and certain symptoms. After some internet research I determined the bugs most likely were Tunga Penetras and verified the symptoms; furthermore upon inspecting the sores I found the tiny tubes sticking up, through the skin, which the literature says is a hallmark of T. Penetras infestation. I found I could take a sharp pin and poked at the tubes and which would then quickly withdraw. I'm easily amused, I guess. I had been using a $12 plastic kid's optical microscope up to this point, I needed to document what I had found so I bought one of those blue "toy" microscopes which hooks up to the USB port of a computer.
OK, Soooo - now I've got a tentative diagnosis and samples and pictures and I go to various large world-renowned teaching hospitals in the Chicago area. The pictures were dismissed without a glance, the samples I had were taken and never analyzed and the written description with pictures of my symptoms along with suggestions for a diagnosis were ignored. I had - psoriasis/pyroderma gangrenosa/acne/shingles/hysterical dermatitis/ulceration of the skin of unknown origin/self-induced skin abrasion and a couple of others diagnoses I can't remember offhand. What a sorry state our medical system is in. The doctors really don't give a damn - God complex - if you don't present them with the opportunity to perform a miracle then you are sent to eternal damnation.
Ivermectin is an anti-parasitic medicine that, according to what I had read, is effective in treating (killing off) T. Penetras. I started asking the different doctors I�d been seeing to write me a prescription for this medication. I got into several arguments with the MDs refusing to give access to the medication. I was told that the only approved use of Ivermectin in the US is to combat the disease "River Blindness", medical name Onchocerciasis. I also discovered there is a definitive test for the diagnosis of microfilariael parasites called the ICT card test. It is supposedly very cheap and widely and routinely used around the world as a matter of course when medically attending to patients in impoverished areas. I repeatedly asked for this test and was repeatedly met with scorn and derision. "It�s a cheap and widely used test � it�ll allow us to definitively rule-out parasites." An icy stare which says "How dare you tell _ME_ how to practice medicine. "
In my web research I had contacted an MD in South Africa who was well
aquatinted with T. Penetras. About 40% of the school-age population of coastal
Africa has or has had T. Penetras � it is a very common and easily transmitted
infestation. [Note that the CDC says that less than a dozen cases of T. Penetras
is reported in the US each year, but that it is thought that the number of cases
is vastly underreported as the condition is thought to generally subside within
a couple of months
_because_the_parasite_cannot_complete_its_full_lifecycle_completely_within_the_human_body_)
CDC Parasite Web Pages
The African MD recommended turpentine
and prying them out by hand with a sharpened stick. Applying turpentine did cause
some of the bastards to withdraw � I applied some turpentine to one of the
pea-sized bumps on my upper lip and the thing quickly expelled a disgusting
half-cc of spew then immediately just dropped out of the hole. It was a classic
deflated T. Penetras female � large, off-white, round abdomen with a tiny tube
at the posterior end and the head, legs, and grabbing claws at the other end.
I saved this specimen for a long time (couple of weeks) in a solution of
turpentine � I had no formaldehyde � and when I showed it to an MD he asked me
where I had gotten it and I told him it came out of the (now) sore in my lip,
he said - this is a perfectly preserved specimen clearly showing head, claws,
legs, abdomen and tube � it�s just a flap of skin I had pulled off my face and
that�s why I now had a sore there.
Supreme gross-out : After the T. Penetras dropped out of the top of my upper lip I had a large (large-pea- or small-marble-sized) cavity with a small opening (1/16th inch). I could poke a toothpick about 3/8ths of an inch up into there.
Within about a week red, rod-like brutes started filling the void. They were 1/4 to 1/2 inch long with a bulb at one end and tapered at the other, about 1/16 inch in thickness. This got me looking at the other open sores and, sure enough, the sores were pools of these beasties all lined up, usually tapered-end in. A few were lengthwise, but for the most part they were embedded in my skin "tail" first.
ASIDE: My research indicated that there are no known macro-parasites which can complete its full lifecycle completely within the human body. [NOTE: check facts on CDC website] Why this is important is as follows � For instance Malaria is a disease caused by a small blood-borne parasite. Since the Malaria parasite can complete its full lifecycle completely within the human body without the need for some external vercor [although it must be noted, in the case of Malaria an external vector - the mosquito - is essential in spreading the disease] the number of Malaria parasites within the blood will increase exponentially, reproducing unchecked and will soon overwhelm the host, producing a possibly terminal outcome.
Conversely the common chigger cannot live and reproduce within the body. You can get a nasty bite or have the thing embedded within your skin until it dies, but it will never reproduce unchecked over multiple generations and overwhelm your body.
This point is important because it seems that whatever causes Morgellons Disease is able to freely reproduce and have all of the various stages in its lifecycle thrive completely within the human body. This is an unknown situation in the medical community; it is part of the reason that the possibility of a skin parasite is so easily dismissed by the medical establishment - "if it really is a parasite it would soon enough die off with no furthur ill effects." This means that Moregellons disease is caused by either some previously unknown parasite or that it is some previously unknown lifecycle of a known parasite. I tend to believe the second - I think it may be caused by T. Penetras reproducing through a novel lifecycle. I could be completely wrong - it's just as likey that T. Penetras was just the vector in my case, and when I finally killed off the T. Penetras what was left was some completely different microfilariael organism.
About this time I became aware of various "enzyme" remedies for parasites. I found a distributor for the one which looked most promising and picked up a couple of quart bottles of concentrate of the peppermint-smelling preparation along with a spray-bottle. I mixed it up according to directions and sprayed myself down and kept the tingling medicament on overnight. I waited for the result and in 3 days the sores worsened significantly and began to emit volumes of fuzzy discharge. Under the microscope this fuzzy material appeared as white, very thin threads; much thinner than a human hair. Despite my efforts to keep the wounds clean the white threads quickly mixed with the gooey effluvium and formed a thick, fuzzy crust over most of the sores. A few sores did not produce the threads and remained open. The sores would get very, very painful after they completely crusted over; so much so that I had to peel the crust off to get relief. Invariably, as I peeled the crust off I would get a flood of relief and the discomfort was greatly reduce. Typically the underside of the crust would contain a number of the rods which had been pulled out of the skin, with the spiky-end sticking out/down.
By this time I had been begging the various MDs I�d been seeing for a prescription for Ivermectin for several weeks. I found a website that would sell it without a prescription � the problem was the price : $645.00 for a single treatment, with the recommended course for T. Penetras being two treatments, the second being two weeks after the first. So I continued with the home remedies, including extraction by prying out with a sharp stick.
I also began removing any painful rod-like beasties by prying them out or pulling them out with tweezers when possible. I never gratuitously pulled them out (well, OK maybe once or twice) � only the ones that were causing pain and discomfort were removed. These were quite painful just being embedded in the skin, before I pulled them out; and were exquisitely painful to remove. They felt like very sharp shards of glass embedded deep into my skin. There was some resistance during the removal, sometimes a great amount of resistance � they were stuck pretty deep into the skin � but when one was successfully removed the relief was immediate and immense � I would get a flood of endorphins or something similar. It was quite remarkable. I did not enjoy yanking these things out but at least it seemed that it was evolutionally/genetically pre-programmed to be encouraged.
ASIDE : The above reaction and other aspects of the infestation lead me to believe that the parasite is using extremely strong and effective enzymes to manipulate its environment, the human body. For instance, the adult T. Penetras embedded in the skin can move freely and rapidly across the skin, between the layers� that�s what causes the wavy lines � the lines are tracks resulting from the movement. I have watched a lump travel across my cheek a full inch in 30 seconds, leaving a red trail behind. I experienced no sensation whatsoever during this movement because the invader produces powerful sensation deadening (pain-killing) enzymes. Also, I have seen these things disappear from the surface of the skin in less than a second � they simply turn-on their enzymes and "swim" through and between layers of skin as if it were water. Also of note is the incredibly powerful adhesion the pest uses. It can secrete a substance so sticky that, if you try to pull it off, your skin will rip before the adhesion is broken; this is again probably through the artful use of enzymes. I have been able to grab these adult T. Penetras with tweezers through the "wavy line" opening when it moved near the edge of a wound. I was able to stop it from moving, and able to identify it as indeed T. Penetras. I was _not_ able to tank it out � it was so stuck or embedded into my skin that I could not pull it free. [On my abdomen I once used this technique along with an Exacto knife to finally capture an embedded specimen. Yeeeoowww! Never did that again � apparently these things can produce pain inducing enzymes also. The whole area swelled up and throbbed like hell for 2 or 3 days. Also � fat lot of good it did me � handed that one over to an MD and never saw or heard anything about it.]
So now things are getting interesting, in a very weird way. By which I mean there are some very strange things about this "problem". On my abdomen I completely cleared all of the rods from one of the sores. It was nearly painless but it bled profusely. When the wound was clear what was left was a "mat" of fibers at the bottom of the wound. It was a crosshatch of the thin, threadlike fibers that had erupted when I had used the anti-parasitic enzyme solution. They were mostly aligned, say left-right, but with a few at 90-degrees, up-down. Within a few hours more rods were sprouting out of the mat. I scraped them off with the Exacto knife and noticed there was absolutely no sensation whatsoever. So I poked at the mat. Nothing. So I lightly drew the knife across the mat. Nothing at all. I cut lightly into the mat. Still nothing. I tried to pry a piece out of the center of the mat but was unable, so I tried cutting a little deeper into the mat. The cut immediately disappeared � as if it had never happened. Woooahh!??! At this point I said What the frick is going on here?!?!?! I cut deeply into the mat � no sensation from the cut, a little pressure from underneath � and the cut closed up and disappeared as fast as the knife went through it OK � now I�m completely going berserk � this is really upsetting me. I cut deeply � all the way through the mat and wedged it open � no pain at all, but a bucket of blood � maybe 10 cc - came pouring out. The cut quickly _closed_around_the_knife_. OK, I�m shaking, my pants and shirt and hands are covered in blood and I�ve got an Exacto knife embedded in my abdomen. Maybe those shrinks at the hospital were on the right track?
But no; I re-cut the mat � this time no blood � held the edges apart using forceps [don�t ask, I just had them, OK?] and carved off a half-mm square. I looked at the sample under the microscope and it was simply a mass of the thread-like thingeys mostly aligned in two directions interspersed with "baby" rods. Apparently the mat was a nursery for the rods with a pool of blood stored for a steady/ready food supply. Woooaaahhh.
About that time it hit me that Ivermectin is a very common, easily obtained veterinary medicine. Off to the Farm and Fleet. For ten bucks for a tube you get enough for 5 treatments. I bought 2 tubes. I read the instruction � the same dosage for both humans and horses � 400 micro-grams per kilogram � that�s some strong stuff � we�re talking parts-per-millions. The first tube I used topically � I smeared enough Ivermectin for a 1200 pound horse all over my body. I left it on for 4 hours then started to worry that I would overdose on the stuff, so I showered. I took a squirt from the second tube and put it on a 2"x2" piece of gauze and taped that over one of the larger sores. When I removed the bandage 2 days later there was no improvement. 2 more days � no improvement. OK, say 80 kg., that�ll be 3.2 mg., that�ll be, let�s see, three and on-half turns of the dispenser. Squirted the goo onto a slice of bread, folded it up and swallowed. Whewww � nearly puked � that�s some nasty tasting stuff.
I had no ill effects so far as I could notice. I did have a fit of trembling, but I get that from time-to-time from my Crohn�s disease. Three days later � THREE DAYS LATER!!! The sores started healing; they started healing like a normal injury. Good-old-regular scabs formed and they slowly shrank and disappeared over a period of 10 days. YAHOO!!!!! I couldn�t believe it!!!! I cancelled all of my doctor�s appointments, I went out in PUBLIC!!!! I had a beer, I had several beers. 9 month of living hell was over!!!
EXCEPT for a few small pencil-lead-sized areas. Hmmm, maybe if I ignore them they will go away� Two weeks later these same spots started to expand and soon the sores started to return. Slowly but steadily my condition worsened. Two months after the initial experiment the symptoms were as bad as before. I tried the Ivermectin again and the sores improved again, but n ot nearly as dramatically or completely.
Back to the web. I come find out that Ivermectin kills microfilariae and it kills adult T. Penetras, but all known filariae-type parasites have multiple stages in their lifecycle, up to 8 different larval and adult stages [think caterpillar and butterfly, for instance] and it turns out the macrofilariae are not affected whatsoever by Ivermectin. In fact there is no know medicine or method to completely kill-off the intermediate larval stages. The Diethylcarbamazine and Albendazole will kill off a large percentage, thereby providing some relief, but nothing is known to be completely effective. Terrific.
However, it was discovered that filariael parasites require the presence of the specific endosymbiotic Wolbachia bacteria in order to be able to reproduce. If that bacteria is not present the parasite cannot reproduce. Soooo � I have been plagued with "fevers of unknown origin" since I had a series of operations to remove portions of my intestines because of the ravages Crohn�s disease. My surgeon has been willing to prescribe antibiotics for me with just a phone call � because that seems to quickly break the fever. I called, said the fever was kicking up again and asked for Erythromycin instead of the usual Keflex � I used an excuse about not wanting to develop antibiotic-resistant infections through overuse of the same antibiotic over and over.
I started the antibiotics right away and took another dose of Ivermectin after a couple of weeks. Since I had very few or none of the threads � the sores were all just a bunch of rods � at least on the surface. � it took a good month for the sores to _all_ _completely_ heal. Things seemed to be working just as it�s supposed to. After 2 months I ran out of antibiotics. Things were looking so good I did not get a refill.
6 months later I was still sore free. I would occasionally get a single rod popping out somewhere, but that was to be expected, as the larvae can live for up to a year or more. The object was to remain Wolbachia-free, and I was able to do that easily, since I was basically completely isolated � because of the Crohn�s, after-effects of the surgeries, pain issues from osteoporosis, arthritis and an old broken-spine injury and other reasons I�d rather not go into � I had no problem staying sterile with respect to this bacteria.
Two months ago I started driving a cab. I had not been able to work since February of 2001 and, because of my very poor physical condition and my inability to predict when I would be able to work driving a cab, where I have the cab 24-hours a day and make my own hours - working or not working as I am able, is about the only thing I can do.
The cab I am driving was driven previously by an African émigré. I think you can see where I am going. Exactly two weeks after I started driving the cab a vicious sore erupted in the back of my neck, at the base of my skull; exactly where my head touches the headrest of the cab.
I chose not to treat that first open pustule by myself. It has, of course, spread throughout my body. The back of my head is pretty bad. I had a half-dollar sized sore right between my shoulder blades, but it just closed up after 6 weeks. Same for the quarter-sized sore on my butt cheek. Two small sores on the right-side of my mouth; the one in the mustache area developed a mat underneath which I scraped away and it has mostly healed � the one to the side of my mouth is still active and quite painful. I keep getting a dozen or two pencil-point size sores on my shoulders but none have developed into anything big. I keep getting the rods in my nose; they are only rarely embedded � typically they are just sitting in there, all white and covered in mucous � one interesting thing is that they produce discomfort, but not pain, sitting there, it�s really strange, you become aware that something is there � a pressure or maybe there is a dull pain � it is such a relief to blow or pick them out. Sorry for being disgusting. They are in my mouth, especially between the teeth; I got one of those waterpick things to blast them out. What�s really bugging me is that they are attacking my fingernail cuticles and fingertips; yeeeowwwey ouch ouch ouch. Typing is really no fun with this. You have got to see the pictures to believe it.
I have been trying to get into the John Stroger Hospital [also known as Cook County Hospital] to present my findings and partner with a physician to document the disease and treatment. I guess I�m a glutton for punishment. But seriously � I had worked with a specific MD and she wanted to see me if this thing flared up again � the problem is getting through the layers of bureaucracy of the county-run hospital. The doc told me to come in immediately if it started up again � to the administrivia this means that they took my phone number and will call me any-day-now with an appointment time. Going through normal registration gives me an appointment in late April. By mid-March I should have an appointment for late March using the "express" service.
I just recently found out about Morgellons Disease and the Morgellons Foundation Site from Coast to Coast with George Norris.
[NOTE: finish this damn thing]
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