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misery_in_au

Sydney, Australia

#1 Jan 3, 2013
A place for us to support each other without any spruikers. This is a terrible affliction with no known immediate cure, and many on this board have experienced on-and-off infestation for months or years. This is a place for letting it all off your chest, giving and receiving emotional support, and whatever you feel helps you to get through this disease and hopefully reduce mite count and eventually eliminate these terrible pests.
Missing my family

Malden, MA

#2 Jan 3, 2013
misery_in_au wrote:
A place for us to support each other without any spruikers. This is a terrible affliction with no known immediate cure, and many on this board have experienced on-and-off infestation for months or years. This is a place for letting it all off your chest, giving and receiving emotional support, and whatever you feel helps you to get through this disease and hopefully reduce mite count and eventually eliminate these terrible pests.
Great Idea! How are you doing? What is your treatment these days?
misery_in_au

Sydney, Australia

#3 Jan 3, 2013
Missing my family wrote:
<quoted text>
Great Idea! How are you doing? What is your treatment these days?
Hi dear MMF, thanx for asking. doing fair to middling. Have definitely reduced the number substantially, all sites on body and scalp dwindling and diminishing significantly through daily use of Lyclear (perm 5%), animal perm spray, isopropyl alcohol gel with perm, antibacterial dish-wash liquid, antibacterial soap, flea shampoo, borax on floors, furniture and in washing. My w/machine is used twice daily, tile floors cleaned twice daily. Mostly all clothes, shoes, soft toys, pillows, cushions, blankets, bedspreads, coats etc and textile furniture thrown out- living now with less than half of what I had before this disease. Doing everything possible can think of- these forums invaluable- there is SO much bad info from doctors who don't want to know me.

I was inspired to start this thread from comments such as yours on other threads from people who had no real support from non-understanding family members often in the same house who weren't infected. This disease is a misery and so much more needs to be done NOW by the medical establishment. What a joke they are.
cured _not_cured_amost

Baltimore, MD

#4 Jan 3, 2013
I have 5 sisters and brothers and after I told them what I was suffering from, they stopping calling. Like they could get it thousand miles away. One sister has started talking to me more off than on. I'm the oldest and my baby sister, whom I have helped, actually all of them but one over the years Td me that it makes her too sad to talk to me. My church family sends me a card now and again. They are praying for me. How about a call, talk to me!!! You can't get this over the phone. Yeah this is a lonely walk, for sure. I decided that I was going to post and that seems to help a lot. I wish there weren't so many trolls.
I'm all for support. Thanks for starting this thread. You sound like you are making headway with your routine. That is a good thing.
Missing my family

Bronx, NY

#5 Jan 4, 2013
Ahh that's really nice of you AU. The funny thing is my family is pretty good. I have had these mites for 8 months (every time a month goes buy my stomach sinks) I didn't know I had scabies for about 4 months into it, and when I did know I did the perm as directed. I asked the doc if I should stay away from people she said No that after treatment I was fine. This was September so after my treatments I went back to my old routine thinking hey everything is fine. Plus my hubby and daughter never caught it, and I'm a pretty affectionate person. I had surgery in October (still kinda itchy, doc said it was normal the meds do that) friends came over..again I thought I was fine. No one has caught scabie, but when I realized in November that hey what's this burrows on my legs and I was itchy that's when I lost it. I was thinking I was ok because the docs aid so but I wasn't. That's when I started getting depressed and came on the forum for ideas....I also shut myself out if friends lives. I did see my family for Christmas. I wore long sleeves, and had slippers with socks up to my knees on. My mom kept kissing me saying ahh I don't care. Maybe my scabies just love me lol. I very precautions I always wear long pants sometimes even with tights under two shirts. My hands never had scabies. I keep may hands alway sanitized. This has been such a crazy ordeal. I miss my old life. I feel like I look so old. I'm only 35. Cured not cured, that's really hard. I have only 1 friend who knows what's going on. I sometimes vent to her...my hubby has been my main person I know he must get sick of seeing me on my phone looking at stuff on the forum and always talking about this crap.
Question: what does your bites look like? I'm 14 days after prem #5 I have been doing iver this am I did inver #3. I have been doing the cleaning bit (AU yours is intense) I seem a few pimple like bumps on my chest, really tiny though and I have two pimple size marks on my neck....they just appeared yesterday. Am I getting bit or is this just the debris trying to come out? They don't itch. Thanks again ladies for allowing me to vent
misery_in_au

Sydney, Australia

#6 Jan 4, 2013
cured _not_cured_amost wrote:
I have 5 sisters and brothers and after I told them what I was suffering from, they stopping calling. Like they could get it thousand miles away. One sister has started talking to me more off than on. I'm the oldest and my baby sister, whom I have helped, actually all of them but one over the years Td me that it makes her too sad to talk to me. My church family sends me a card now and again. They are praying for me. How about a call, talk to me!!! You can't get this over the phone. Yeah this is a lonely walk, for sure. I decided that I was going to post and that seems to help a lot. I wish there weren't so many trolls.
I'm all for support. Thanks for starting this thread. You sound like you are making headway with your routine. That is a good thing.
Hi cured_not, your family sucks. That was my initial impression. But... just looking at it from the other side... maybe they just don't understand the sheer frustration? Have you thought of directing them to these threads to see the desperation of people who've tried it all and more? People being shunned by doctors, using animal products in huge quantities, throwing all furniture, moving/selling homes, dousing in petrol etc? Nobody knows the torment of incessant itching. So, after you've directed them to these threads and if they still give you the cold (uninfected) shoulder, then they really do suck. But only cos they can't empathise without experiencing it themselves.
misery_in_au

Sydney, Australia

#7 Jan 4, 2013
Missing my family wrote:
I wore long sleeves, and had slippers with socks up to my knees on. My mom kept kissing me saying ahh I don't care. Maybe my scabies just love me lol. I very precautions I always wear long pants sometimes even with tights under two shirts. My hands never had scabies. I keep may hands alway sanitized. This has been such a crazy ordeal. I miss my old life. I feel like I look so old. I'm only 35. Cured not cured, that's really hard. I have only 1 friend who knows what's going on. I sometimes vent to her...my hubby has been my main person I know he must get sick of seeing me on my phone looking at stuff on the forum and always talking about this crap.
Question: what does your bites look like? I'm 14 days after prem #5 I have been doing iver this am I did inver #3. I have been doing the cleaning bit (AU yours is intense) I seem a few pimple like bumps on my chest, really tiny though and I have two pimple size marks on my neck....they just appeared yesterday. Am I getting bit or is this just the debris trying to come out? They don't itch. Thanks again ladies for allowing me to vent
Hi again mmf, maybe the clothes layers are what's exacerbating them? Just an idea. I miss my old uninfected life too (big sigh, tears in eyes)...

My bites differ- could be they're atypical but unsure. Used to get the tracked ones but since super-aggressively treating just single ones. They start as a water-filled rash and then end up with a black devil. Scalp itches intensely. Back has cleared dramatically. Just a few left. So has rest of body with exception of legs, which increased when others went down. There's a single bullet-sized hole in each of right shin and right hand. Was literally being eaten alive back then. And there used to be the same sized holes in my back, though they've healed now (four of them).

Interesting its more of right side of body been affected- I'm right-handed- could it have something to do with electromagnetic activity?

It should be part of the CDC protocol to use a nit comb 2x daily- gets rid of the nymphs which will always be on anyone's hair (even without scalp bites or burrows).

Yes those new ones of yours are bites. Sometimes they don't itch at the very first but will do so within 4 days.
misery_in_au

Sydney, Australia

#8 Jan 4, 2013
By the way have lost count of the number of perm tubes. Would estimate close to 50-60. Used 4x tubes horse iver, dozens of tubs of borax. Still here but abating, *but* scalp very itchy past two days.
misery_in_au

Sydney, Australia

#9 Jan 4, 2013
Know this sounds insane. Have just sprinkled couple teaspoons borax through (dry) hair. Will let you know how it goes.
misery_in_au

Sydney, Australia

#10 Jan 4, 2013
Actually this is far less crazy than a tube of horse paste :P

Instant relief too. Have rubbed it in much like you would when rubbing salt crystals into the skin to exfoliate. Not so crazy at all.
Missing my family

Bronx, NY

#11 Jan 4, 2013
Wow that's a lot of tubes of prem...I'm soo hopeful that I was going through post scabies. I don't know what to do anymore...I'm doing the iver for a few more weeks. The bumps/pimples usually go away in a few days. They are mainly on my chest. I got this rash on my stomach it came and also left within two days. I use to feel crawling on my scalp now not so much...the last few day nothing. I don't feel any bumps. I don't know what to do if this doesn't work after this month. I don't want to keep using prem, because I know that I have muscle twitching because of it.(Crying) I was trying diff things each month...what if it doesn't cure me? I don't want to use 45% prem...but I might have to. I never did the whole sulfur thing for 3 days on and then again 7 days later that might be my next plan. I need a cure. I know life isn't fair but this is tourtue. I want to be normal soo bad, and have a baby. Do you have burrows on your scalp? Are you able to sleep at night?
cured _not_cured_amost

Baltimore, MD

#12 Jan 4, 2013
I've been rubbing borax in my hair, in shoes, in bagged dirty clothes. In container of clean then throw in dryer before I wear. Borax is good. I don't think it's killing many but I'm still doing the borax thing til I think my liver is up to another poisoning.
I like the borax a lot but it makes me itch alot too because of drying the skin out and that layer it leaves. In_au, I did about 20 tubes myself, not it just doesn't do anything but piss off the bastards.
I am thinking about doing RKs treatment with Eprinex, citra sol and alcohol. I'm not quite ready cause he finished 1st week dec. and it hasn't been enough time if he relapses. I hope he doesn't. He has done so many things to find a cure and has shared the whole time. I don't know. I got some of the stuff yesterday but I don't know. It's scary with poisons. I went to the hospital last year cause I go ivermectin in my eye, thought I would loose it, but I'm ok now. I about went bling using dog stuff and it got in my eyes and I had a white film for a couple of hours. Damn scary. My face and eyes get bad if I'm not diligent.
I am so pissed at my family. They know about these forums. They don't want to get depressed, I understand. I'm thankful my husband is here. It gets tough on him too if I bring it u too much. He has cried with me. Gotta go . May we be cured soon. God Bless Us all with the cooties, haha
misery_in_au

Marrickville, Australia

#13 Jan 4, 2013
Missing my family wrote:
Wow that's a lot of tubes of prem...I'm soo hopeful that I was going through post scabies. I don't know what to do anymore...I'm doing the iver for a few more weeks. The bumps/pimples usually go away in a few days. They are mainly on my chest. I got this rash on my stomach it came and also left within two days. I use to feel crawling on my scalp now not so much...the last few day nothing. I don't feel any bumps. I don't know what to do if this doesn't work after this month. I don't want to keep using prem, because I know that I have muscle twitching because of it.(Crying) I was trying diff things each month...what if it doesn't cure me? I don't want to use 45% prem...but I might have to. I never did the whole sulfur thing for 3 days on and then again 7 days later that might be my next plan. I need a cure. I know life isn't fair but this is tourtue. I want to be normal soo bad, and have a baby. Do you have burrows on your scalp? Are you able to sleep at night?
yes you may need to use 45% perm, have done so myself until they pulled the product off most shelves here in Aus (nanny state mentality- we're not supposed to know how to use it- d'oh!)...

yes there are old burrows on scalp. Scalp most affected. Got infested after roof cleaners blow-vacced bird detritus down off roof back in May last year. First thing affected was scalp, very very badly. Misdiagnosed for months. Finally self-diagnosed THEN doctor agreed. Have fought a LONG battle costing thousands, moved twice.
misery_in_au

Marrickville, Australia

#14 Jan 4, 2013
cured _not_cured_amost wrote:
I've been rubbing borax in my hair, in shoes, in bagged dirty clothes. In container of clean then throw in dryer before I wear. Borax is good. I don't think it's killing many but I'm still doing the borax thing til I think my liver is up to another poisoning.
I like the borax a lot but it makes me itch alot too because of drying the skin out and that layer it leaves. In_au, I did about 20 tubes myself, not it just doesn't do anything but piss off the bastards.
I am thinking about doing RKs treatment with Eprinex, citra sol and alcohol. I'm not quite ready cause he finished 1st week dec. and it hasn't been enough time if he relapses. I hope he doesn't. He has done so many things to find a cure and has shared the whole time. I don't know. I got some of the stuff yesterday but I don't know. It's scary with poisons. I went to the hospital last year cause I go ivermectin in my eye, thought I would loose it, but I'm ok now. I about went bling using dog stuff and it got in my eyes and I had a white film for a couple of hours. Damn scary. My face and eyes get bad if I'm not diligent.
I am so pissed at my family. They know about these forums. They don't want to get depressed, I understand. I'm thankful my husband is here. It gets tough on him too if I bring it u too much. He has cried with me. Gotta go . May we be cured soon. God Bless Us all with the cooties, haha
OMG my heart goes out to you ALL. Have had peroxide in my eye before but luckily flushed it well and no damage at all. I say bring on the chemicals. This disease is insidious and life-changing.

Buckets of chemicals- we're fighting the devil.
cured _not_cured_amost

United States

#15 Jan 4, 2013
We had a flood really bad here and I think that's how I got mine. Cleaning up. It took me months and going on line to figure it out. Then I started going to the doctor telling them what I had with samples in tow. You are so right. We are fighting for our very life. If we think we are anal now, just how will we be if we get over this? Will we ever mentally be over this? I know I will not ever be the same ole happy hugging girl I was, never and no hand shakin either. I will only sit on wood chairs or stand at others homes. At least that's how I think.
Sometimes I get so scared that I won't get over this, time behind me I didn't want to live, but now I'm like we got to make medical society take notice and help us from accidentally killing ourselves.
I am sending one email a week to specialist about this plague. I have sent out 14 last year, but I'm maintaining better, at least for now. We have a lot in common with folks with Lyme, morgellons, fungus, and mold. Everyone of these have parasites. And they attract more with the crap they have on them. It makes me sick to ponder it.
I wish so rich influential folks would get this and start a foundation for a study where they found a cure. Just since I've had this, the forums have tripled, this stuff is spreading. I believe it's all from using too strong of pesticides on crops. And introducing mites to affect certain bugs that were damaging crops. I have found buckets full of info but you can't attack the big power houses that have warehouse full of money. Ok, gotta stop, whew, makes me soooooooooo pissed.
My heart goes out to the new post about the pregnant girl, breaks my heart.
So glad to come and be able to release,
Guess I'm good for a while.
We must stay strong and hopeful.
Missing my family

New York, NY

#16 Jan 4, 2013
misery_in_au wrote:
<quoted text>
yes you may need to use 45% perm, have done so myself until they pulled the product off most shelves here in Aus (nanny state mentality- we're not supposed to know how to use it- d'oh!)...
yes there are old burrows on scalp. Scalp most affected. Got infested after roof cleaners blow-vacced bird detritus down off roof back in May last year. First thing affected was scalp, very very badly. Misdiagnosed for months. Finally self-diagnosed THEN doctor agreed. Have fought a LONG battle costing thousands, moved twice.
Wow that's crazy,I heard bird mites are the worse. They are harder to cure then scabies. If I have to go that route and 45% prem then I will, just not my 1st choice right now :-(
Missing my family

New York, NY

#17 Jan 4, 2013
cured _not_cured_amost wrote:
We had a flood really bad here and I think that's how I got mine. Cleaning up. It took me months and going on line to figure it out. Then I started going to the doctor telling them what I had with samples in tow. You are so right. We are fighting for our very life. If we think we are anal now, just how will we be if we get over this? Will we ever mentally be over this? I know I will not ever be the same ole happy hugging girl I was, never and no hand shakin either. I will only sit on wood chairs or stand at others homes. At least that's how I think.
Sometimes I get so scared that I won't get over this, time behind me I didn't want to live, but now I'm like we got to make medical society take notice and help us from accidentally killing ourselves.
I am sending one email a week to specialist about this plague. I have sent out 14 last year, but I'm maintaining better, at least for now. We have a lot in common with folks with Lyme, morgellons, fungus, and mold. Everyone of these have parasites. And they attract more with the crap they have on them. It makes me sick to ponder it.
I wish so rich influential folks would get this and start a foundation for a study where they found a cure. Just since I've had this, the forums have tripled, this stuff is spreading. I believe it's all from using too strong of pesticides on crops. And introducing mites to affect certain bugs that were damaging crops. I have found buckets full of info but you can't attack the big power houses that have warehouse full of money. Ok, gotta stop, whew, makes me soooooooooo pissed.
My heart goes out to the new post about the pregnant girl, breaks my heart.
So glad to come and be able to release,
Guess I'm good for a while.
We must stay strong and hopeful.
Hey this is what the forum is for vent! I saw that poor girl, preggers and dealing with this crap I pray she gets cleared quick. Having a new baby and dealing with this is un real...
misery_in_au

Bankstown, Australia

#18 Jan 5, 2013
Yeah guys, just vent. That's what this thread is for. There's a whole new potential industry for shrinks in this. I doubt that I will ever be the same again after this.

and hows this for a quote from cured_not:

"we got to make medical society take notice and help us from accidentally killing ourselves."

says it all really doesn't it? Docs refuse to help so we gotta help ourselves. God help us. My infection is bird mites. Little fackers.
cured _not_cured_amost

United States

#19 Jan 5, 2013
Mine are bird mites too, bastards.
I'm so glad to be able to come here.
I didn't sleep much last night and worked 10 hours so I'm headed to lay down. I read a lot last night on past post, so just wondering about a few things past posters have done and what you think.
Keep the faith.

Since: Jan 13

Location hidden

#20 Jan 6, 2013
Hi ladies!! I hope all is well. Did you see Langlories post on bird mites? Looks like Hume and his wife are doing well and beat the bird mites! I had a weird day yesterday...I did iver Friday and Saturday. I felt ok till the evening and I started to itch like crazy, just on my form arm. I put some olive oil/clove oil on my skin. Woke up today and the rash is gone. The pimples I had my chest I squeezed it and puss came out...nothing else the pimple like bumps on my neck are still there and they don't itch. I was thinking tonight I was going to try the borax soap scrub for a week. See how that goes. I have a few more iver weeks to go. Good news I went to see my daughter play basketball last night then we went to dinner :-) on Friday I had to bring my daughter to the hospital she hurt her tail bone and the doc told that if she wasn't better to bring her back after Christmas. So I did. We grabbed some dinner and talked first time in a while, when we got home she tells me I had so much fun. I say really we only went to doc and grabbed food. She says I know but I had fun... I know she must miss me. She's going to be 14 in a couple of weeks.*waterworks*

I hope you ladies are feeling some relief today,

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