About the crawling sensation

About the crawling sensation

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Since: Jan 08

Chicago, Il

#1 Feb 18, 2008
Out of curiousity, when any of you feel the crawling, does it feel like there is a sensation in one or two spots, or much more than that? I have been experiencing crawling sensations all over my body. If I had to count areas/spots, I'd say there's more than 1/2 dozen, and, it seems as though each spot has a couple little crawly things going on. Few areas seem to be spared- it's on each thigh, crease between groin and thighs, abdomen, under breasts, lower back, and upper back. If each of these is a mite, then I have tons of them on me. I thought that unless a person has an extremely difficult case as perhaps they'd been misdiagnosed for many months, the average scabie sufferer has only 10-20 mites on them. If that's false info, and each crawling sensation is indeed a mite, I have no idea how I'll ever get rid of this!
Anyone want to chime in on their experience with the crawlies? I need some comparison, insight, and info if possible. Thanks, gang.
tooscratchornot2 scratch

De Witt, IA

#2 Feb 18, 2008
You will definitely feel crawlies where there ARE mites. Personally I felt them on the back of my neck CONSTANTLY and I never had any bumps or evidence there.

It's so hard to say for sure. It's real, but your mind and skin plays tricks on ya too. The medication can also cause the crawlies.

I hope it gets better for you!
Cantkillem

Gig Harbor, WA

#3 Feb 18, 2008
10-20 adult mites may have been for traditional scabies. Whatever this is-a mutant or somethinge else that resembles scabies-definitely had numerous mites and burrowing places all over the body.
Welty

AOL

#4 Feb 18, 2008
That's 10-15 females which are burrowed and laying eggs under the skin. Nobody has a male count but it's more because the males are quite vulnerable, because males are the ones that tend to roam around the skin. or in very shallow burrows, causeing the most crawling. Males are the ones that can be reduced with a nice MSM sulfer scrubbing and various home remedies. To get the females under the skin (which will keep this infestation going if you don't get them) you want to get Permethrin, or Eurax creams or Ivermectin pills. Lindane only if nothing else works as it has some side effects, but does kill the eggs. You have to treat your environment at the same time for a long time or until you are clear for at least three weeks to be sure.
Welty

AOL

#5 Feb 18, 2008
ICan'tTakeThis, I just realized that was you! Some of these names sound similar and I mixed you up. Are you treating with Sulfer? Still crawlies? I do wonder sometimes if this is a mutant species or if the human sarcoptic mites might have at some point interbred with the canine sarcoptic mite which would give them an atypcial rash pattern, and no "five days life span" on a human host before they die out.

Since: Jan 08

Chicago, Il

#6 Feb 19, 2008
tooscratchornot2scratch wrote:
You will definitely feel crawlies where there ARE mites. Personally I felt them on the back of my neck CONSTANTLY and I never had any bumps or evidence there.
It's so hard to say for sure. It's real, but your mind and skin plays tricks on ya too. The medication can also cause the crawlies.
I hope it gets better for you!
Thanks, 2Scratch. I hear ya about the mind/skin games. Sometimes I try to still my mind and determine if it's just static, or hair, or whatever, and, I'm quite sure sometimes it is, but, most of the time, not really. The crawlies are a bit different. I've tried explaining the sensation to my sister, and it wasn't easy. Her daughter has exzema, and she keeps asking her what it feels like (my niece does say sometimes if feels as though something just bit her). However, the power of suggestion is strong, so asking an 11 year old pointed questions such as 'do you feel like things are crawling on you?' is going to illicit an 'Uh-huh', I'd imagine.

Well, thank you for the insight. I just needed to hear other's experiences/comments.

Since: Jan 08

Chicago, Il

#7 Feb 19, 2008
Welty wrote:
ICan'tTakeThis, I just realized that was you! Some of these names sound similar and I mixed you up. Are you treating with Sulfer? Still crawlies? I do wonder sometimes if this is a mutant species or if the human sarcoptic mites might have at some point interbred with the canine sarcoptic mite which would give them an atypcial rash pattern, and no "five days life span" on a human host before they die out.
Hey there Welty- Yep, it's me. I am treating with sulfur; the pomada, specifically, head to toe 24 hours. Now, I did stop for about 3 or 4 days due to the excessive drying of my skin and it was flaking off terribly. But, in that time, I did spot treat with pure neem oil and use 85% neem lotion on rest of body. Also, since I read the post about Bye Bye Blemish and literally stumbled upon it at Walgreens, I find it's a great spot treat (also 10% sulfur) and use that as well. I was just shocked that since only being off the full body I got such and intense amount of crawlies. It's so discouraging sometimes.
Here's an odd thing, though. Yesterday at work (was by myself due to holiday) I took some scotch tape where I felt crawlies and decided to trap the litte buggers. Well, if I didn't pull off HUGE amounts of flaked skin! And, the crawlies diminished a bit after! Was some of it just skin ready to flake off? Lord, I hope so. Just thought that was interesting and worth sharing. Kinda goes with 2scratch's comment about skin & mind tricking us....

Since: Jan 08

Chicago, Il

#8 Feb 19, 2008
Oh, meant to write 'since only being off the full body for a few days'.

Since: Jan 08

Chicago, Il

#9 Feb 19, 2008
Cantkillem wrote:
10-20 adult mites may have been for traditional scabies. Whatever this is-a mutant or somethinge else that resembles scabies-definitely had numerous mites and burrowing places all over the body.
Hey, Cantkill-
I bet you're right. They're like Teenage Mutant Ninja Scabies!!!
janetinnyc

United States

#10 Feb 19, 2008
Hi everybody,
I missed you a lot this weekend, but everyone's been with me in spirit, and I was so busy putting all your good tips into action that I hardly time to eat. I vacuumed and vacuumed.
Welty, I found those "crocs" you recommended, at my favorite discount store. They were 4 dollars, and what a good idea. I also keep thinking of the seasoned derm from the skin care center who was so adamant about feet and floors. Per his advice, I'm doing it every day, and I've put plastic over my dining room table.
The vacuuming with borax is so important! I was sweeping and mopping before, under the wrong impression that the bugs would come out of the exhaust still alive. But I put lots of borax around, and I think that will help clean out the vacuum. I need to get a new one with disposable bags.
Took my cat to get ivermectin yesterday--ironic how easy it was to get ivermectin for the cat! Took her to groomer today, and she's going back to my friend's house tonight. I miss her so much already, but how much better it will be for all concerned until the environment is clear. Thank God my friend loves her almost as much as I do.
About scabies vs crusted scabies: OK, I'd like to help clear that up if I can. I should say that I write medical materials for doctors, and so I've acquired some research tools along the way.
Ordianry scabies is 10 to 20 mites, never more. Crusted scabies is anything more, and the count can go from 100s to 1000s, even millions, depending on the the host and the length of time they've had to multiply unchecked.
The common, very common it seems, misconception among derms and other doctors is that only immunocompromised and elderly, institutionalized people get crusted scabies. If you don't fit that profile, regardless of the symptoms you present with, the derm assumes you have only ordinary scabies and treats you accordingly. If doctors read up on the current medical literature, they would soon discover that crusted scabies can occur in "immunocompetent" patients, much more than they realize. Meanwhile, doctors aren't used to seeing crusted scabies and don't know it when they see it, also, they don't know how to treat it. I believe we are all in an amazingly similar boat. For whatever reason, most of us on this site have crusted scabies--I know, it's a hideous name, and misleading, because it can be practically asymptomatic, often is, and the literature says it can go undiagnosed or misdiagnosed for years!
I don't want to scare anyone, but the more information we have, the better we will be. Incidentally, I also discovered in the course of my research the latest regimen for treating resistant scabies, the results of a 10-year study. A very high success rate was achieved with the following protocol: 200 micrograms/kg days 1, 2, 8, 9, and 15. Days 22 and 27 were added if necessary.(I have to check the last 2 doses, whether it was day 27 or 29 for the final dose). The ivermectin was administered in combination with topical benzyl benzoate and combined with 5% tea tree oil. I have to check to see when that was applied. I need to know for myself. I'm still attempting to get the ivermectin from the doctor. But I do now have a mailbox at Mailboxes so I can order the meds!
This is a wonderful forum, and thank you all for being here.
Scabies3

Deerfield Beach, FL

#11 Feb 19, 2008
janetinnyc wrote:
Hi everybody,
I missed you a lot this weekend, but everyone's been with me in spirit, and I was so busy putting all your good tips into action that I hardly time to eat. I vacuumed and vacuumed.
Welty, I found those "crocs" you recommended, at my favorite discount store. They were 4 dollars, and what a good idea. I also keep thinking of the seasoned derm from the skin care center who was so adamant about feet and floors. Per his advice, I'm doing it every day, and I've put plastic over my dining room table.
The vacuuming with borax is so important! I was sweeping and mopping before, under the wrong impression that the bugs would come out of the exhaust still alive. But I put lots of borax around, and I think that will help clean out the vacuum. I need to get a new one with disposable bags.
Took my cat to get ivermectin yesterday--ironic how easy it was to get ivermectin for the cat! Took her to groomer today, and she's going back to my friend's house tonight. I miss her so much already, but how much better it will be for all concerned until the environment is clear. Thank God my friend loves her almost as much as I do.
About scabies vs crusted scabies: OK, I'd like to help clear that up if I can. I should say that I write medical materials for doctors, and so I've acquired some research tools along the way.
Ordianry scabies is 10 to 20 mites, never more. Crusted scabies is anything more, and the count can go from 100s to 1000s, even millions, depending on the the host and the length of time they've had to multiply unchecked.
The common, very common it seems, misconception among derms and other doctors is that only immunocompromised and elderly, institutionalized people get crusted scabies. If you don't fit that profile, regardless of the symptoms you present with, the derm assumes you have only ordinary scabies and treats you accordingly. If doctors read up on the current medical literature, they would soon discover that crusted scabies can occur in "immunocompetent" patients, much more than they realize. Meanwhile, doctors aren't used to seeing crusted scabies and don't know it when they see it, also, they don't know how to treat it. I believe we are all in an amazingly similar boat. For whatever reason, most of us on this site have crusted scabies--I know, it's a hideous name, and misleading, because it can be practically asymptomatic, often is, and the literature says it can go undiagnosed or misdiagnosed for years!
I don't want to scare anyone, but the more information we have, the better we will be. Incidentally, I also discovered in the course of my research the latest regimen for treating resistant scabies, the results of a 10-year study. A very high success rate was achieved with the following protocol: 200 micrograms/kg days 1, 2, 8, 9, and 15. Days 22 and 27 were added if necessary.(I have to check the last 2 doses, whether it was day 27 or 29 for the final dose). The ivermectin was administered in combination with topical benzyl benzoate and combined with 5% tea tree oil. I have to check to see when that was applied. I need to know for myself. I'm still attempting to get the ivermectin from the doctor. But I do now have a mailbox at Mailboxes so I can order the meds!
This is a wonderful forum, and thank you all for being here.
hi janet. can you post some links to the articles you metion about crusted scabies? it would be a good idea to bring this lit with you when you visit your derm.
janetinnyc

United States

#12 Feb 20, 2008
OK, have been posting all over the place. Where is everybody? NEWS: The internist read articles I brought and wants to prescribe full, 5-day regimen of ivermectin plus whatever topicals I recommend, based on research and on recommendations of this forum. Honestly! It's true! He just wants to make sure I follow the best protocol possible. He wants this to work. I will go to hotel (with what money is detail I haven't worked out entirely) maybe right after last dose. Meanwhile, do everything in my power to maximize chances. What is best for killing what ivermectin can't (ie, eggs and babies)? Lithane? Benzyl benzoate? I am ordering benzyl benzoate from australian site, but is there one closer? Which? I think in the past 2 weeks I've gotten an overload of information. Can't find that ordering thread either.
BB, Scabisan, premetrhin lotion and cream, and spray, lithane (I guess), and tea tree oil (which I have). These are what I'm thinking now. Any suggestions please? Need to order or get prescribed next couple of days. Don't want to start whole thing any later than Friday.
Thank you all!!!
janetinnyc

United States

#13 Feb 20, 2008
Sccabies3, I googled "crusted scabies" and all these articles popped up, right on top. The primary article referred to throughout is by Roberts et al, the results of a 10-year trial with patients with very resistant recurring scabies. There's another primary by Currie et al of the same trial with dosing regimen included, and several clinical review articles that talk about this study. The clinical articles also call out the dosing regimen. The value of this study is the authors took patients from the aboriginal community who had been suffering for years and had had many doses of ivermectin. These authors were able, after much trial and error I'm sure, to find the regimen that was most highly effective. Also, they included valuable in vitro and in vivo data. The mites did not become resistant to the ivermectin, the problem was that the patients were undertreated to begin with plus they were going back into the community where they were getting reinfected. The good news is, if the patient is treated properly and not further exposed, ivermectin works, even with patients who have taken a lot of it, along with topical treatment (they used benzyl benzoate mixed with 5% tea tree oil). The regimen:
200 micrograms/kgs ivermectin on days: 1,2,8,9, and 15, plus days 22 and 29 if necessary.
I have to check article myself to figure out how and when they applied BB, tea tree oil combo. I've been inquiring everywhere about best topical regimen. What should I use with iver? Anyway, just google "crusted scabies" and you can't miss this stuff. Review articles also talk about how chronic, atypical, crusted scabies can be misdiagnosed or missed entirely for years!
SleeplessInNY

Irvine, CA

#14 Feb 20, 2008
janetinnyc wrote:
Sccabies3, I googled "crusted scabies" and all these articles popped up, right on top. The primary article referred to throughout is by Roberts et al, the results of a 10-year trial with patients with very resistant recurring scabies. There's another primary by Currie et al of the same trial with dosing regimen included, and several clinical review articles that talk about this study. The clinical articles also call out the dosing regimen. The value of this study is the authors took patients from the aboriginal community who had been suffering for years and had had many doses of ivermectin. These authors were able, after much trial and error I'm sure, to find the regimen that was most highly effective. Also, they included valuable in vitro and in vivo data. The mites did not become resistant to the ivermectin, the problem was that the patients were undertreated to begin with plus they were going back into the community where they were getting reinfected. The good news is, if the patient is treated properly and not further exposed, ivermectin works, even with patients who have taken a lot of it, along with topical treatment (they used benzyl benzoate mixed with 5% tea tree oil). The regimen:
200 micrograms/kgs ivermectin on days: 1,2,8,9, and 15, plus days 22 and 29 if necessary.
I have to check article myself to figure out how and when they applied BB, tea tree oil combo. I've been inquiring everywhere about best topical regimen. What should I use with iver? Anyway, just google "crusted scabies" and you can't miss this stuff. Review articles also talk about how chronic, atypical, crusted scabies can be misdiagnosed or missed entirely for years!
janetinnyc,

I am in New York City as well. I am having a hard time finding a doctor willing to help. Its been 4 months now. Would you tell me what Doctor you are seeing? Its so hard finding someone who will listen or understand. If you would like to email me the information: [email protected]

Any help is appreciated. I keep thinking I have these things under control and then im back to square one.
janetinnyc

United States

#15 Feb 20, 2008
scabies3, did you get the links I posted? I can't find them. Here they are again:
www.journals.uchicago.edu ./doi/pdf/10.1086/4
www.encyclopedia.com/doc/IGI-144297866
The title of first (primary):
First Documentation of In Vivo and In Vitro Ivermectin Resistance in Sarcoptes scabiei
Currie BJ, et al.
Second (clinical review):
Crusted scabies: a clinical review.
Journal of Drugs in Dermatology 2006.
My internist look at both of these and decided, based on that and his physical exams, and my reports of suffering, that he would prescribe full regimen oral and topical regimen.
Take heart, please try to see derm again, or have him or her refer you to infectious disease doc. Bring him these articles. Doctors should at least be made aware of latest data. Best luck.
SleeplessInNY

Irvine, CA

#16 Feb 21, 2008
janetinnyc wrote:
scabies3, did you get the links I posted? I can't find them. Here they are again:
www.journals.uchicago.edu ./doi/pdf/10.1086/4
www.encyclopedia.com/doc/IGI-144297866
The title of first (primary):
First Documentation of In Vivo and In Vitro Ivermectin Resistance in Sarcoptes scabiei
Currie BJ, et al.
Second (clinical review):
Crusted scabies: a clinical review.
Journal of Drugs in Dermatology 2006.
My internist look at both of these and decided, based on that and his physical exams, and my reports of suffering, that he would prescribe full regimen oral and topical regimen.
Take heart, please try to see derm again, or have him or her refer you to infectious disease doc. Bring him these articles. Doctors should at least be made aware of latest data. Best luck.
Sorry - just realized typo with my email address.
[email protected] (not 54!!)
Scabies3

Deerfield Beach, FL

#17 Feb 21, 2008
janetinnyc wrote:
scabies3, did you get the links I posted? I can't find them. Here they are again:
www.journals.uchicago.edu ./doi/pdf/10.1086/4
www.encyclopedia.com/doc/IGI-144297866
The title of first (primary):
First Documentation of In Vivo and In Vitro Ivermectin Resistance in Sarcoptes scabiei
Currie BJ, et al.
Second (clinical review):
Crusted scabies: a clinical review.
Journal of Drugs in Dermatology 2006.
My internist look at both of these and decided, based on that and his physical exams, and my reports of suffering, that he would prescribe full regimen oral and topical regimen.
Take heart, please try to see derm again, or have him or her refer you to infectious disease doc. Bring him these articles. Doctors should at least be made aware of latest data. Best luck.
thanks for this janet. I think it would be a good idea to go to an infectious disease specialist. next time I go anywhere, I'm bringing copies of the studies done. great idea.

Since: Jan 08

Chicago, Il

#18 Feb 21, 2008
janetinnyc wrote:
scabies3, did you get the links I posted? I can't find them. Here they are again:
www.journals.uchicago.edu ./doi/pdf/10.1086/4
www.encyclopedia.com/doc/IGI-144297866
The title of first (primary):
First Documentation of In Vivo and In Vitro Ivermectin Resistance in Sarcoptes scabiei
Currie BJ, et al.
Second (clinical review):
Crusted scabies: a clinical review.
Journal of Drugs in Dermatology 2006.
My internist look at both of these and decided, based on that and his physical exams, and my reports of suffering, that he would prescribe full regimen oral and topical regimen.
Take heart, please try to see derm again, or have him or her refer you to infectious disease doc. Bring him these articles. Doctors should at least be made aware of latest data. Best luck.
Hi Janet-
I just told my father last week that I wanted to see an infectious disease specialist. My mother had a team of them taking care of her due to a MRSA infection, which, eventually did take her life, but, these doctors were brilliant, caring, and thorough. I can't figure out how to get my regular doctor to refer me to their office, however, and going without a referral means no insurance coverage. Yikes. It's something I really, really think I need to do at this point, though.
Scabies3

Deerfield Beach, FL

#19 Feb 21, 2008
I cant take this wrote:
<quoted text>
Hi Janet-
I just told my father last week that I wanted to see an infectious disease specialist. My mother had a team of them taking care of her due to a MRSA infection, which, eventually did take her life, but, these doctors were brilliant, caring, and thorough. I can't figure out how to get my regular doctor to refer me to their office, however, and going without a referral means no insurance coverage. Yikes. It's something I really, really think I need to do at this point, though.
I can't take this: I am sorry about your mom. That must have been tragic for you. Call your doctor's office and tell them that the meds are not working for you, and you fear that this will spread to other family members, etc. But you should give the ivermectin a shot. You may not need to go see that specialist afterall.
Itchycoo Park

Wellingborough, UK

#21 Jul 13, 2011
based in Uk, i started with scabies in january.My Dr wasnt sure about what my problem was but i was sure, after doing research. I caught it from an elderly friend whose spouse was in a nursing home.they had suffered for 3 years cos their Dr said he didnt know what it was , but was sure it wasnt scabies. I was sure it was. I got the recommended cream and after a second application, it seemed to clear, then after a month or so i started for the first time, with that crawling sensation mentioned by some of you. It feels like a gentle breeze blowing across areas such as my eyebrows or cheek , forehead and also in various pats of the body. I HATE it , knowing something is living and crawling on me.. I stopped visiting the elderly friend months ago so how do i keep getting it coming back ? i have no close contact with anyone at all. Can these little mites lay dormant under the skin for months and rear up again ?? I will start more treatment of permethrin again at weekend , but the thought of this just going on 'ad infinitim ,is sending me 'gaga' PLEASE someone tell me how to be rid for ever

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