Discussions By Condition: I cannot get a diagnosis.

Super scabies Parasite ravaging my body; losing eyesight

Posted In: I cannot get a diagnosis. 27 Replies
  • Posted By: Euronymous
  • December 30, 2007
  • 10:01 PM

Hello. I sure am glad I finally found a live message board, maybe someone knows something about this. Three months ago, I noticed itching on my body, but nothing appeared to be there, I thought it was fleas as I have several cats as pets. Next, when I felt jumping and crawling sensations on my scalp and in my hair, and couldn't get rid of them, I thought it was head lice. When RID wouldn't get rid of them, I went to a doctor and was diagnosed with scabies when I told her how the mites would burrow beneath the skin, itch, and become more active at night. I had some areas on my body that had the hallmark red bumps that scabies causes, so I figured that's what it was. I've used Permethrin in attempts to treat the parasite to no effect. I've tried Permethrin several times, and Ivermectin on two separate occasions, still my entire body is covered with the mites.
Doctors say that what I describe cannot be scabies, scabies doesn't get in the eyes, on the scalp, it causes wounds whereas this isn't rejected by the skin. What's worst is the ability of this mite or worm to conceal itself, as I can no longer even get help from doctors who think I'm imagining this. The parasite mimics skin cells, and sheathes itself in the skin, where it poses as rough dry skin. It is very small, but large enough to be recognized with a magnifying glass. It can alter it's appearance, but generally looks like a translucent to white grain similar in shape to a scabies mite, but it also appears as a worm, yellowish-brown (perhaps trying to blend with my hairs). When agitated, the mite can project a dart from it's body - I believe it "shoots" some kind of thread like fiber from this dart...I don't know what for, very weird.
My right hand is in very bad shape, it is swollen (with the parasite) and the top layer of skin has been removed. This is the hand that I use most often to wipe the crawling bugs off of my skin, and to brush my hair. The mite goes inside the body and affects other organs, the extent of which I'm not sure. I'm experiencing nausea, weakness, loss of coordination and balance, tremors, numbness, muscle and joint aches, weight loss, twitching, nervousness, earache, and alot of eye discomfort. They've affected my vision, and everything appears foggy, or dim, and things seem to blink or flicker. I'm really worried and in agony from the persisting crawling (like an ant) and biting (like a flea), but I can do nothing about it. I've been to every hospital in the area, out of pocket because I have no insurance. Doctors won't take me seriously and I'm afraid that this stuff could be deadly. My grandmother recently contracted it, but she doesn't want to tell anyone for embarrassment. Any help would be great, I'm running out of hope that I'll ever have my life back.

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27 Replies:

  • sounds like reaction to amphetamine abuse
    Anonymous 42789 Replies
    • January 4, 2008
    • 00:34 AM
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  • It's called Morgellon's disease.I know alot about it as I have suffered for 14 years with it. You can research information on it.It is real. You are not crazy and you are not delusional. There is alot of info out there on this disease.Nurses have the highest incidence of it to date.I have been a nurse for 15 years. Best wishes... mommy cat Here is a link that may helphttp://cherokeechas.com/ please look into it.
    mommy cat 1654 Replies
    • January 4, 2008
    • 01:58 AM
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  • There has been a lot of discussion on this board about this weird skin problem. Have you been to a dermatologist who can look at one of those things under a microscope? Do you live in the tropics? Look up schistosomiasis. Also human parasites. These are the symptoms of Morgellon's. This is one of those problems/diseases that haven't been fully recognized and you might have a hard time finding how to treat it. There are lots of web-sites devoted to this. Skin rash Skin sores Fiber-like particles under skin Fiber-like particles on skin Stinging skin sensation Crawling skin sensation Biting skin sensation Sensation of insects on skin Muscle pain Connective tissue pain Fibromyalgia Fatigue Short term memory loss Joint pain Vision changes Impaired concentration ability Impaired attention Cognitive dysfunction
    rad-skw 1605 Replies
    • January 4, 2008
    • 11:34 AM
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  • Some of the symptoms sound like adult onset diabetes. Dry Skin on feet and hands, biting/burning sensation, blurred vision.
    Anonymous 42789 Replies
    • January 11, 2008
    • 05:52 AM
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  • We had these too. My son got them from Chuck E Cheese. You can get them from restraunt tables, dirt, and from the laundrymatts. My doctor gave my son a RX, but I was pregnant and just bought those lice treatments over the counter. She told us to put it on at night time and then get up in the morning strip your bed the clothing you wore and wrap it up and carefully carry it to the washer and wash it in HOT water in the washer. Good luck. You will feel that you will never get rid of them. It will drive you insane. P.S. they like to get in the web of your fingers. that is a sure sign.
    Michelle35 1 Replies Flag this Response
  • I'm not discounting any of the people who have replied, but my first impression of reading your situation is that it strikes me as something psychiatric and psychosomatic. The fact that you believe that they are chameleons and can conceal themselves in your skin is concerning. This isn't coming from someone who just thinks that you're crazy; I've had a few of your symptoms in the last few weeks (crawling, itching, sensation that there are bugs infested on my clothes and skin but unable to ever find any, marks that appear to perhaps be bites), though not nearly as bad as you describe. Though the idea that this was somehow mental rather than physical made me really angry at first, I've since then started to pay more attention to my body and am open to the possibility that it may in fact not actually be bugs or scabies. Though some are quick to call it a 'delusion', like some sort of insect schizophrenia or whatnot, the sensations feel absolutely real so that's hard to accept. However, the brain does process all of our sensations through nerves that tell your mind what you're feeling, so it's very possible for something to be messing with the wiring and causing our brains to send incorrect signals. This might be from more emotional things like anxiety and paranoia or biological things like allergic reactions or other conditions. In my case, it could be a mixture of both; I have a history of anxiety, am a bit obsessive, have quite a few phobias, and am somewhat of a hypochondriac. I've also read that drug use can play a part.Your other symptoms sound very serious though, so I hope that you're seeing doctors regularly, and that they can hopefully be of some help.Anyway, who knows what is the answer for you, but I wish you good luck and can only suggest to try to do things that you enjoy to get your mind off of it and get lots of fresh air. A stiff drink at night has seemed to help me calm down a bit, too, though that's definitely not medical advice.
    Anonymous 42789 Replies
    • February 23, 2009
    • 10:15 AM
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  • http://www.cdc.gov/unexplaineddermopathy/general_info.html "Recently, the Centers for Disease Control and Prevention (CDC) has received an increased number of inquiries regarding an unexplained skin condition which some refer to as “Morgellons.” Persons who suffer from this unexplained skin condition report a range of cutaneous (skin) symptoms including crawling, biting and stinging sensations; granules, threads, fibers, or black speck-like materials on or beneath the skin; and/or skin lesions (e.g., rashes or sores). In addition to skin manifestations, some sufferers also report fatigue, mental confusion, short term memory loss, joint pain, and changes in vision.The cause of this condition is unknown, and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors.To assist in learning more about this condition, CDC is conducting an epidemiologic investigation. To learn more about the investigation, please refer to the following link: CDC's Unexplained Dermopathy Investigation. " Morgellon's. I had Morgellon's for a while (Morgellon's can coexist with CFIDS, another illness i have.. or exist by itself). I found that they do become more active at night... Im one of the lucky ones who had that and has gotten rid of it. It used to make me so itchy that I'd sleep in a salt bath at night (I used to use 1 kg of salt and 250 grams of bicarb soda in the bath each time). I believe the salt over a long period, got rid of the things.(you will find the salt drives them crazy and they start coming out when you bath in this) Other things they didnt like is lavender essential oil and also if you smudge yourself with white sage. I found they hate white sage. (by smudge i mean one lights it up and wafts the smoke of it about one.. it causes them to come out of the skin). I hope my info helps.
    taniaaust1 2267 Replies
    • February 23, 2009
    • 10:58 AM
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  • Morgellon's is a real disease. It is being called a super scabie parasite, a dermatology problem by others and a psychosomatic illness by the psychology realm. There is alot of information on the web regarding this illness. I have become an independent researcher due to almost losing my life to it. the year before last, I found THIS webite...wd through here I was able to find my diagnoses and also found the proper treatment from a woman I met her ein this forum...she saved my life. Since then, I have gone on to build my own Morgellon's web forum after purchasing a digital microscope and digital camera for microphotographs of these organisms and attempting to solve the Morgellon's mystery. For any of you experiencing any of this, I am truly sorry. I lived through a complete nightmare. I found my diagnoses and was properly diagnosed with chronic fatigue syndrome and Fibrolyalgia which we are now learning is only stage I of Morgellon's. There are about 5 stages and each one is progressively worse. Please find NAET or BioSET therapy to assist with symptoms within a vast range. It will detoxify, desensitize, alleviate allergies, rejuvenate organs, blalnce hormones and rid you of the severe symptoms like joint pain, brain fog and fatigue. Best regards mommy cat
    mommy cat 1654 Replies
    • February 24, 2009
    • 01:23 AM
    • 0
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  • If it is scabies, if you don't decontaminate the area, you'll never get rid of it. You have to change bedding/towels/mattress pads/clean the floors/wash all clothes that you come in contact with, etc...everything needs to be washed in hot water, including floors/vacuum rugs. You should see a dermatologist.
    Monsterlove 2921 Replies
    • February 24, 2009
    • 05:56 AM
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  • Hmmm... sometimes I feel like I have to scratch an area and there's nothing there... especially with areas that have hair on them... This summer I'm planning on removing all the hair on my body, boiling every single piece of cloth that will ever touch me or my mom's skin, and sitting in a salt bath every night for a week (thank you for that idea guy who posted about it). That way I won't have to deal with it when I'm at college. :cool:I realized it wasn't just the itches when my mom started to complain to me about it as well...
    thesage 10 Replies
    • February 24, 2009
    • 09:04 PM
    • 0
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  • then you both need the treatment for it and the clothes washing; if it's scabies, you shouldn't wait until summer.
    Monsterlove 2921 Replies
    • February 25, 2009
    • 02:53 AM
    • 0
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  • I suffered from similar symptoms a couple years ago. Some of you symptoms seem quite serious and I would go to another community clinic and or public health dept. maybe. Check with Dr. about using cleansing herbs etc.. I can give you some advise for a mite that seems to be unidentified. I also was dianosised with scabies and when I got a sample of one of what ever. They said oh it is a insect. With no real diagnosis just to go to the vets.. The vet said go to the Drs.. I got a microscope some made fuzzy balls and two seemed to be together. (Get rid of any fuzzies too)To start all mites and or bugs come from the outside. Get your Dog and cat tested for heartworms and if negative give them revolution. This with bathing and keeping ears clear of mites will help control the infestation. My cat had bottom itching so I had them clean the duct. Vacum clean and spray all your mattresses, couches, chairs, care etc.. You can get spray for lice at store. Cats must be out of house until air is clear, use fans to help. You can get a flea powder from Wal-Mart-Enforcer Flea Killer seems to help again with animals outside. YOU MUST VACUUM FLOORS AND FURNITURE EVERYDAY. All towels and bedding must be washed each day. Use rubbing achohol on your body. Follow directions but use lice shampoo and or shampoo from Dr. on hair clean brushes with boiling water. Clothes need to be washed in boiling water too. Switch hoses on washer (cold to hot etc.) Use broateen in wash and use bonce softner tissues for each dry. Put Bonce tissues under mattress, sofa custions etc.. You need to get new pair of shoes and socks. Keep nails clean and cut. Each time you feel a itch use alchol on it. You can get drops for ears (made for swimmers). PUT PLASTIC COVERS ON MATTRESS AND NEW PILLOWS. You can use a water flush for bowels if they itch you there. Make sure to follow directions. You can dehydrate. Drink lots of water. Outside remove animals, bowls and toys and spray with Mylatain. It must be dry before animals may return. Make sure to vacuum and spray your car regularly. If you have samples maybe you can contact Riverside College in California they may be able to check them out for small fee. If you have them around your eye lashes you must go to clinic as they have medication to use around your eyes. I hope this helps anyone that is told they have scabies and the problem is much more complicated. There seems to be mites and or insect out there going undiagnosised. HANG IN THERE. We still have to vacuum alot and have a occasional itch but, can see the end of road in sight.
    DANDNICKY 3 Replies Flag this Response
  • The most common remedy is as dangerous to you as to them - something along the lines of DDT which Poison Control would like to see banned- so let's go with an herbal oil that is just as effective and will not harm you in the process of ridding the buggies.at www.youngliving.org/gilsign up and then get into your cart1. Cintronella 2. Lavender Hair and Scalp Wash3. Thieves Household CleanerThese will not only repel the insects but also kill them and their eggs. The cintronella, so you know is classified as:1. Generally Regarded As Safe2. Food Additive3. Diet Supplement4. Use with caution during Pregnancy, don't thinl you have to worry about that, you sound like a guy, right?5. Could possibly result in Skin Irritation - this one worries me a bit because your hand is raw!So Dilute the dose 50/50 you will use with a common oil ( olive or veggie oil from kitchen)LISTEN:apply 2-4 drops on location, 3 times daily ( I would see if I can use it full strength in areas of the body but in areas you know are raw/sensitive skin(like the crotch area is sensitive skin) use it half strength 50-50, full strength is more effective obviously. )On the head massage at night before bed diluted 20-80 ( 1 teaspoon citronella to 4 teaspoons veggie or olive oil) to treat the hair and scalp use 2-4 drops of essential oil citronella to 1 teaspoon of lavender shampoo.USE THE PRODUCTS FROM THE WEBSITE BECAUSE THEY ARE THERAPEUTIC GRADE AND WILL WORK- market products are not pure and will not be effective- thus wasted money and no effect and then you telling me it doesn't work. NO GNC either! Their stuff is diluted and made "affordable". This stuff will last you a long time. If you have to save money then don't buy the household cleaner but I thought it would be great to clean your house so you make sure all is DEAD!Thieves is antimicrobial, antiviral, anti-fungal and will kill!DO NOT EAT IT- there is also a thieves toothpaste and mouthwash but that is different. The thieves oils is also something you can eat but not the household cleaner. Well, keep me posted : ) clean the house very well. Wash in HOT water the bed clothes. Are the cats indoor? DO they show signs of having this too? If so let me know. We can see what they need. They need to stay away from certain oils and use much smaller doses.
    founddog 188 Replies Flag this Response
  • Forgot to mention- EYEScareful around eyesoils cannot go in them and if you put them near do it only at night (when eye is closed) and put a fine layer so if you rub it will not go into the eyes. DO NOT put your hands with oils on your eyes by accident. Also if you do and need to "wash" use a veggie oil to dilute unwanted oil - water will not "wash" the oil away- this is for use with any oil!But yours is a food additive and supplement so I doubt it is too bad but as a rule NEVER put oils or fingers in the eyes!
    founddog 188 Replies Flag this Response
  • I had replied previously with some suggestions. I want to note that I said to spray car. This was in reference to indoor spray used as directed. There was a reply about herbal remedies. Non-toxic remedies I would recommend first. However the war with these little mites is a tough one. So you may have to resort to other means if not sucessful. Follow all directions for sprays, shampoos etc.. Also another tip is do not use cotton sheets on bed they make some kind of cocoon from the cotton (They were there in one night). I used silk want a be sheets and they do not like them. STEAM KILLS THEM TOO> non-toxic and effective. Get a steamer and steam floors, carpet and furniture. Also vacuum each day with clean bag and or empty vacum. Place vinyl ( I got fake leather look cushions) cushions on car seat. When you vacuum clean ceiling of car too. Good Luck to anyone that has the mystery mite. I hope the Dept. of Health takes a better look at what seems to be new species and also possible transmission between humans and animals. I e-mailed them and got a 1950's pamphlet about getting rid of scabies. :(
    DANDNICKY 3 Replies Flag this Response
  • I had replied previously with some suggestions. I want to note that I said to spray car. This was in reference to indoor spray used as directed. There was a reply about herbal remedies. Non-toxic remedies I would recommend first. However the war with these little mites is a tough one. So you may have to resort to other means if not sucessful. Follow all directions for sprays, shampoos etc.. Also another tip is do not use cotton sheets on bed they make some kind of cocoon from the cotton (They were there in one night). I used silk want a be sheets and they do not like them. STEAM KILLS THEM TOO> non-toxic and effective. Get a steamer and steam floors, carpet and furniture. Also vacuum each day with clean bag and or empty vacum. Place vinyl ( I got fake leather look cushions) cushions on car seat. When you vacuum clean ceiling of car too. Good Luck to anyone that has the mystery mite. I hope the Dept. of Health takes a better look at what seems to be new species and also possible transmission between humans and animals. I e-mailed them and got a 1950's pamphlet about getting rid of scabies. :(
    DANDNICKY 3 Replies Flag this Response
  • Wow, I found dust mites on the internet and saw how these guys are minute- like almost invisible except under the microscope- are these the scabies you speak of?I have had those in a bedroom before- my kid who was always scratching her head and picking at herself, so the area was full of dead skin cells and it wasn't long until they came and she wasn't the best at letting me in there to vacuum. I was super busy teaching too so I was always running. But when things got bad we would do the room and vacuum and get rid of all the "feeding" material and wash everything and vacuum the mattress. This can't be what you have cause you have other symptoms- like flu and illness. Well, if it is what you have then Clove will kill it too. Diffuse this in the room and it will kill anything bacterial, parasitic ( including lice) and fungus in the room - which gets people ill through allergies and virus, bacteria- since they hitch rides on the fungus which is air born. )You can buy Clove also on www.youngliving.org/gilThe mites also don't like humidity lower than 70% so for maintenance or even maybe you can kill them by lowering the humidity. Also hang your sheets out to dry, or at least pull them all the way back so the bed gets aired out, so it isn't warm and humid in there- they thrive in that atmosphere.They reproduce every 16 to 30 days and sometimes up to two eggs a day.My daughter used to wake up with bites in strange places- shoulder, hand, face That is when she would let us get on top of things. It was also seasonal. So things she could get away with during some seasons she couldn't in other seasons where cleanliness was concerned. You can also put the clove on you, not the face unless you want to zap a zit with it ( one hour and it is done) careful around sensitive areas. - just don't let it go into your eyes- wash your hands with olive oil when you are finished, to be sure you don't rub the eyes. Good Luck
    founddog 188 Replies Flag this Response
  • Whoever the person is that said this sounds like a reaction to meth is a real ***k.i know you posted this a long time ago, but i hope this will be helpful to whoever is reading this now:in my mind, there is no doubt that what you describe is due to bedbugs; the clincher was that your grandma 'contracted' them.There is no simple remedy for this, if a remedy indeed exists; but accepting the truth that bedbugs are the cause will eventually lead to improved mental balance and a better sense of control over your environment. They are probably not just in your bed, but behind your baseboards. Don't bother with bug bombs and the like - waste of money; won't kill them. Extreme heat, boiling water and/or steam works best at killing them on linens and around the house; they dislike the odor of sulphur and murphy's oil soap. Spraying yourself with Off and scrubbing your body well with antibacterial soap will provide temporary relief. Bedbugs are so small, they're practically invisible until they're adults; even then, they hide in amazingly small crevices and usually come out only at night, so chances are good you'll never even see one. They move super-quickly. They reproduce rapidly. They can lie dormant without feeding for up to 18 months They probably reached you through a piece of furniture; BE SO CAREFUL WHEN ACCEPTING PIECES OF SECOND-HAND FURNITURE. Ask yourself: why is this being given away and/or in the trash? What could be wrong with it? Why did the original owner part with it. Then be sure to examine it VERY carefully.The only way to really be sure you're rid of them is to strip down naked and walk away from everything you own; never to look back, never to return, and with no exceptions. if that's not something you're willing or able to do, then re-read my post.Good luck and God bless.Hello. I sure am glad I finally found a live message board, maybe someone knows something about this. Three months ago, I noticed itching on my body, but nothing appeared to be there, I thought it was fleas as I have several cats as pets. Next, when I felt jumping and crawling sensations on my scalp and in my hair, and couldn't get rid of them, I thought it was head lice. When RID wouldn't get rid of them, I went to a doctor and was diagnosed with scabies when I told her how the mites would burrow beneath the skin, itch, and become more active at night. I had some areas on my body that had the hallmark red bumps that scabies causes, so I figured that's what it was. I've used Permethrin in attempts to treat the parasite to no effect. I've tried Permethrin several times, and Ivermectin on two separate occasions, still my entire body is covered with the mites. Doctors say that what I describe cannot be scabies, scabies doesn't get in the eyes, on the scalp, it causes wounds whereas this isn't rejected by the skin. What's worst is the ability of this mite or worm to conceal itself, as I can no longer even get help from doctors who think I'm imagining this. The parasite mimics skin cells, and sheathes itself in the skin, where it poses as rough dry skin. It is very small, but large enough to be recognized with a magnifying glass. It can alter it's appearance, but generally looks like a translucent to white grain similar in shape to a scabies mite, but it also appears as a worm, yellowish-brown (perhaps trying to blend with my hairs). When agitated, the mite can project a dart from it's body - I believe it "shoots" some kind of thread like fiber from this dart...I don't know what for, very weird. My right hand is in very bad shape, it is swollen (with the parasite) and the top layer of skin has been removed. This is the hand that I use most often to wipe the crawling bugs off of my skin, and to brush my hair. The mite goes inside the body and affects other organs, the extent of which I'm not sure. I'm experiencing nausea, weakness, loss of coordination and balance, tremors, numbness, muscle and joint aches, weight loss, twitching, nervousness, earache, and alot of eye discomfort. They've affected my vision, and everything appears foggy, or dim, and things seem to blink or flicker. I'm really worried and in agony from the persisting crawling (like an ant) and biting (like a flea), but I can do nothing about it. I've been to every hospital in the area, out of pocket because I have no insurance. Doctors won't take me seriously and I'm afraid that this stuff could be deadly. My grandmother recently contracted it, but she doesn't want to tell anyone for embarrassment. Any help would be great, I'm running out of hope that I'll ever have my life back.
    Anonymous 42789 Replies
    • October 18, 2009
    • 11:24 AM
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  • Don't know if anyone is reading this, but there's a better than average chance that it could actually be mange. Sorry if that sounds insulting, but it's not any more insulting than morgellon's or meth.
    Anonymous 42789 Replies
    • October 26, 2009
    • 04:06 AM
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  • Ok, since you mentioned in your post that you are a typically paranoid person, you should take a breath for a second, because by now you're probably sick of being blown off or told you're incurable or untreatable or a drug addict or have some crazy disease that doesn't exist then trying to sell you herbal cures or align your chakras or whatever. I could be wrong, but in all likelihood, what you have is HUMAN DEMODICOSIS. More commonly, it's called mange. Sorry if that sounds offensive, but it's no worse than someone suggesting morgellon's or meth. Take another breath. It's treatable. Curable, actually.It's one of those conditions I've seen fall through the cracks because infection of humans is extremely rare outside of particular geographic areas. Demodex mites are very similar to lice or scabies but the mites actually burrow under the skin and are not visible to the naked eye. They also prefer to infest hair follicles. Infection of the eyelash and hairs around the eye would account for your vision problems, it also accounts for the dry patches you described. And why doctors keep missing it. Anyone looking for scabies would find the spots, but not the mite. Anyone looking for lice would see you scratch, but they could spend a month combing through your hair and not find a thing because they are beneath the skin and in the hair follicles. Even removing all body hair won't help, because they actually are under your skin. These mites tend to be hardy and do not generally respond to the treatments (especially the over the counter ones) for lice or scabies again, because they live under the skin, so you're not just imaging that. There's simple test that can diagnose you. All you have to do is walk into an ER in your condition and ask for it. Skin scrapings need to be analyzed under a microscope and you'll see the mite. They'll start your treatment and you can start getting on with your life.
    gregtfish 67 Replies
    • October 26, 2009
    • 11:01 PM
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