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to sufferer for over a year

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Jul 14, 2011

sufferer for over a year Profile

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Scabies

Progress' Scabies Forum

To Progess, Pat1A, GMB1306, paranoid, and others who have been so helpful...thank you so much. Had it for 2 years now. Been to many doctors including dermatologists, naturopaths, even a flippin' hypnotist because the last dermatologist (who is nationally renowned) said, "You have to get the idea that it's scabies out of your head, you'll make yourself crazy". MAKE myself crazy??!! I think shutting yourself away from friends, not dating, not letting your child have sleepovers, wishing like h**l it was winter so you could wear longsleeved/long pant clothing, pulling away from hugs b/c you're scared you might just transmit it? No decent sleep for 2 years? I'm already there, thank you. Depressed, demoralized, discouraged..... Finally, at work a week or so ago,in the middle of the worst outbreak yet, I just lost it completely when a kindly ER doc I work with said, "What's wrong? You are not yourself at all!" I just burst out sobbing and heaving in the middle of the ER. He led me into a side room and between sobs, I choked out the story. At the end, silence. I thought, "OK, here it comes, you're crazy, it's all in your head, let me make you a referral, blah,blah, blah." Instead, he said, "I believe you. The epidemiology itself is classic. If you feel comfortable with it, sign in as a patient and I will evaluate you." So I did. He was very surprised when he saw the distribution (classic), the burrows (classic), and the description of what it felt like (classic). He said, "you mean they think this is dermatitis? Wow." Since we have a small lab attached to the ER, we scraped a burrow and looked under the microscope. We didn't see much at first besides skin and red blood cells but at last, there it was...classic scabies mite. You might think that I would be elated or relieved to have been proven right...well maybe I was, a little....but still after 2 yrs of suffering, how relieved can you be? I am currently on a regimen that Progress posted about and my doc found on uptodate.com, a medical review site(it is a paying site, $495.00/yr. Eek! ) It is the ivermectin on days 1,2,8,9,15 and for good measure days 22 and 29 b/c my Dad had had the crusted kind. I am using Progress' advice about grapefruit juice and taking the Iver in the late afternoon with a fatty meal (that part's not hard, lol!) and I am HOPEHOPEHOPING that this will cure us. If not, I don'y know how I will be able to take it mentally. But just to know that this doc cared enough to believe in me and help me and in fact vindicated me when everyone else thought I was a freaking loon, is helpful. I'll let you know how things go. THANKS AGAIN everyone.  (Jul 20, 2011 | post #470)

Scabies

Scared to use horse Ivermectin

OK, a sympathetic doctor has prescribed an Ivermectin regimen based on guidelines from a noted scabies researcher who is the contributor on the excellent medical site uptodate.com. But, since the pills are so expensive, I am considering using the horse Ivermectin paste that several of the forum contributors have posted about. I went to the local feed store and bought a paste manufactured in the US because of the stringent governmental quality assurance process. I can't being myself to use it, even though I am desperate, b/c of the warnings not to use in other mammals (I know in particular that it can be harmful or fatal for several dog species). I know I am probably overreacting, because the 1.87% paste is equivalent when weight dosing to the 200 mcg/kg human dose. Comments? Encouragement? Thanks.  (Jul 16, 2011 | post #1)

Scabies

Well, it's 2 years now...yay me! :(

I'm....hopeless, disgusted, and demoralized. I've scanned the various threads over the past year and occasionally commented (I suffered for over a year before I discovered this forum) and I appreciate all the advice you have given, celebrate the cures, and sympathize with those who still suffer. Like many of you, I still suffer from this accursed affliction. I got scabies when my dad came to live with us after recuperation in a nursing home for a broken hip. He brought the pests with him. Together, we have seen: 6 doctors, 3 dermatologists, and a naturopath. Dad had crusted scabies which we have never been able to completely eradicate. Mine is a more or less "typical " infestation. We've been through rounds and rounds of permethrin and then last year when I insisted on it, ivermectin. The doctors are insistent that the perm/ivermectin combo we used late last summer should have killed everything, provided we did the house/car cleanup right and have no possibility of reinfection from other sources. There was a time after that perm/iver treatment and professional house cleaning that we had 8 or 9 glorious weeks when I believed we were cured, and then they came roaring back with a vengeance. Not one of the medical professionals we've consulted (and one is a kind, intelligent, and renowned dermatologist) believes that we still have scabies, even in the face of absolutely classic presentation and distribution. Being a medical professional myself, I've scraped burrows at work and have seen mites under the microscope, have brought the slides with me for the docs to look at, but they either "don't see it" or refuse to look at them. It is so demoralizing. They infer by their manner or actual words that I am nuts and that "I just have to get this idea out of head that it's still scabies, b/c it's not." They no longer return my phone calls. Let me just say that I am employed full time, manage a home, care for an elderly parent and am raising my tween child by myself. I have never suffered from delusions or any other psychological affliction, and their attitude enrages me. Years of sleep deprivation, intense itching and body scarring have left me anxious, depressed, and demoralized. I have little joy left in life, and the saddest thing is how all this is affecting my child. Anyway, sometimes the only thing that has kept me sane is reading your posts and seeing that people like you are going through the same thing. On another tack, I am going to plow ahead and try something a little different. A sympathetic doctor whom I work with has a subscription to uptodate.com, a medical review site which takes experts in each field (dermatology, diabetes, MS, heart disease, etc.) who give the very latest info on treatment, literature/study review, etc. He let me look at the scabies portion of the site (which is 45 pages long, btw!) and I am going to try the doctors' recommendation of ivermectin on days 1, 2, 8, 9, and 15, and since Dad had crusted scabies, two additional treatments on days 22 and 29. Since the drug is so expensive, I am going to swallow my trepidation and get horse ivermectin paste, which several of you so helpfully posted about. I am a little frightened about where this med might be manufactured and the quality control in the manufacturing lab, but it is worth the risk I think, especially when weighed against the suffering we are going through now. I am afraid to hope since we've been so bitterly disappointed in the past, but I have to try. I'll keep you updated. In the meantime, thanks again for helping keep me sane through all this.  (Jul 14, 2011 | post #1)