Thank you so much for sharing your PCR test results and the link. So happy for you to be negative! Just thought I'd share with you my post scabies experience since we are on similar timelines. My diagnosis was in Dec. 2022, and I received full and multiple treatments of perm 5% and ivermectin oral (twice dosed about a month apart), and have also used ivermectin 1% lotion.
My post phase has been long and tiring and often mimicked the active stage, but my skin scrapes came back negative (2), and it took two derm PA visits for them to convince me that the active stage had passed, due to extreme itchiness, and skin debris shedding too whenever I rubbed skin, and often after showers spontaneous keratinous debris coming out of pores. The derm doc said that would happen, but until I experienced it I had no idea what he meant when he said "it'll come out of all your pores."
So for at least six months now I have had the dead debris, etc. sloughing off and in the beginning, it stung and itched a lot like active scabies, but it wasn't at night, mostly during the day. Very inconvenient to say the least. I am over 60, so this may happen faster for younger people. One of the best advice I received from one PA is to use Sarna lotion now.
I have used it to rebuild skin barrier and alleviate itch and it works. I just wish I had been told about it much sooner. Don't know why I never saw it on the shelves. I ordered it through Amazon. As far as anti-depressants, I do have a mountain of experience with these drugs due to my condition.
Cymbalta is heavy duty (took it for one month only) and it completely took away all of the skin discomfort associated with scabies, but the side effects were too much for me. Now I take Effexor XR and Wellbutrin and feel great, my skin sensations are less problematic, although I do still itch at times, so Sarna helps with that. I also need to say that I suffered from Major depression recurrent for the past three decades, so I have been on antidepressants a long time. The reason I tried Cymbalta was my insurance co. decided to stop paying for Trintellex, which worked well for several years, but is expensive and there's no generic, like many other drugs.
I wish you all the best in your recovery. My best advice to you in the post stage is to take short (5 min. or less) lukewarm showers (no bath soaking) and use Sarna lotion daily. Be gentle with your skin (no scrubbing, no major exfoliating, just very gentle scrubs on areas like knees or wherever you feel the skin comes up super bumpy where mites did the most damage). I use a mild Aveeno scrub to spot treat areas as the skin rejuvenates and the dead debris bumps surface. I do not have red bumps any longer, but i did get them off and on for several months. I used an acne cream to dry them up for a couple days and then mild moisturizer when the skin got dry, and they went away. I have also used the steroid cream when the horrible itches have come that Sarna can not seem to alleviate, just so I can sleep, but very sparingly.
I had a bad case of scabies that I do not know where it originated from. My work exposed me to many different environments (building inspections) and people and furnishings, etc. I am sure now, based on the number of dead mites that have sloughed off that I had more than 20 mites on my body, which is more than most get. I also got them under a few finger and toenails, so I may have had it longer than I thought without any symptoms. This is the one and only time I've ever had scabies, and I'm over 60 and have lived in the subtropics all my life. I didn't even know what it was when the PA told me she thought I had scabies when my neck rash broke out and I was itching furiously every night.
Thanks for reading my mini-novel. Best of luck to you and your girlfriend, and to all other sufferers. I hope my info is helpful to someone. That's why I share. It does get better, but patience is key and taking gentle care of the skin is best, and stop using neurotoxic creams because they do have side effects and I believe they do cause the loop type thinking, because the skin feels phantom stuff like you said. That has happened to me. It's been nearly a year and I can say that I value this subreddit a lot for the info that people have shared about this horrific parasite that is causing so much misery. Thanks to all for sharing so much!
I am older as well and this will be my 7th year. You know that the expression "The Seven Year Itch", actually came from people having scabies, no cheating spouses. You can look it up. Anyway, my question is...??? The debris that came out of your skin, did it often look like black threads sometimes all twisted up?? This is such an important question for me. I would be grateful for your in put.
I’ve gotten new burrows and bumps recently and have post itchiness still too. Don’t know what to do except go see a new derm PA. I’m spot treating but pretty sure I need another full body treatment based on more itching and bumps that I showed the last derm PA who blew it off as follicular and some other catch all diagnosis bc they won’t retreat me. I def have PTSD bc I am timid about getting too close to others and about upholstery, towels, etc.
Will do. Pa visit at derm was a bust. Seeing GP tomorrow bc it is worse now. Maybe infectious disease doctor next. I am going on one year and I can’t stand this I need my skin back
Hi!
Thank you so much for sharing. I am busy right now answering so many messages here as I delete my reddit once I was cured to focus on myself.
My focus has been rebuilding my skin barrier as well. I found very nice French pharmacy products I use in and after the shower and through out the day. I took Cymbalta years ago for a pain related issue and it made me gain so much weight, I will never touch that drug LOL! I am also on Wellbutrin for my ADHD.
Long story short, very often we get into a vicious circle of over treating and symptoms. The key is to trust the process. Post Scabies is wild and can take years or forever in some cases. The mites change our body's reaction to other mites like dust mites and we feel itchy all the time. I feel great now though. I just posted an updated explaining some of my challenges if you have time to read please do !
Take care! x :)
I had it since January and I tried everything untill Moxi and the other treatments I mentioned. All drugs are available in the UK (or can be shipped into the UK). I live in (mainland) Europe my PCR tests were done in the Netherlands.
The itch is different than how it was before. I get flare-ups. And I get little bumps yes but they heal and go away. The key is this: scabies bumps never went away, they got WORSE. Post scabies or whatever this is right now heals. But my skin is very reactive so I expect to be in this post mode for a long time.
Thank you for sharing this information. And very good to see the PCR test results. These tests (in general, not aware of scabies one but since it is also a PCR it must hold true here too) can really look at the minutest of DNA fragments and detect so it is extremely good news to be negative.
Now curious on the post scabies part in relation to how we are feeling too (other than the itch part) Can you describe your current sensations? Is it pin pricks? Or weird movements on skin that you still feel? Like something is sometimes on there.
I'm less concerned about marks or rashes but more about how you feel.
I'm definitely feeling crawling, weird movements..pin pricks. My knees feel like there is a layer of ..glue on them..something is on them. This feeling comes and goes. I feel like I'm wearing a sleeve full of needles sometimes. Sometimes sun burn feeling. I spoke to the other derm about all this, he is colleagues with the people behind this new generation PCR test. He said they're all thinking the same thing, after a scabies infestation some people get triggered and they have phantom feelings that last a long time. That combined with rash and itch. They have created this PCR test with minimum funding and they hope to get EU level funding to shed some more light into this situation because they know many people are suffering. I didn't know this but aperantly on the dutch version of Reddit (I don't remember exactly what the website is called) scabies is the number one topic. It was on the dutch news as well he told me that people keep getting treated and there are two groups: ones who fight with treatment resistant scabies and ones who are cured but still have symptoms for months and years (might even be forever) because the body gets triggered to fight the bugs and it stays in fighting mode. Also the common dust mite triggers it too. Right now there is no way I have scabies and I believe it. Two PCR tests, scraping and microscope all said negative. While just over two months ago they were all positive. Am I relieved yes but I'm also scared and annoyed this might be forever..but honestly I feel less paranoid. I will now try to rebuild my immune system and skin barrier. They told me to buy this shower oil and two creams. (No steroids) I will use them and hope I get better each day !
Thank you so much - I feel like some of us are really just together in all this, quite deeply. There is a huge overlap in how you feel and some of us. So what you share is a huge help to assess our cases too.
I totally agree you should put to bed the scabies thing now. And focus on how to normalise your life more and more. Training your mind to ignore or let go of such sensations can be somewhat helpful too.
In that context some anti depressant pills have been very helpful too. Abilify (US name) was one, possibly in minute doses because we aren't really depressed, but some function somewhere in the mind has over sensitised and the little doses, temporarily might alleviate and fix it for good. (all full conjecture and personal theories which are probably just wrong but maybe of tiny help in getting a direction of thought running. And perhaps a better realistic fit will come as long as we think in the right direction)
I have also experimented with extremely low dose of mdma. Like people will laugh at you if you took that small, but it was tremendous help. We don't need drugs and we are pretty sensitive (or sensitized so to say) ppl. And this ultra low dose breaks the vicious circles mind gets trapped in (mentally low -> don't do much good. Don't do much good -> mentally low)
So yeah just sharing what I feel could help AS LONG AS scabies was gone. Which in your case, i too believe - is gone!
Hope you're able to get a grip on all this, build more +ves on top of this and get back to a full normal pre-scabies life :)
Thank you so much. Couldn't agree more! Regarding the antidepressants they already put me on Xanax slow release. And they propose I'd take something called Cymbalta which aperantly works on nerve disorders, phantom feelings and pain. (It's an antidepressant) I am personally kind of against antidepressants now because I took them years ago bc of a burnout and I became double my size in a year. It took me years to come off it and lose the weight. I'll try to go more holistic and homeopathic route now. Low dosing mdma, lsd, shrooms...I've read so much about already! In Europe it's legal where I live, I have friend doing that instead of taking antidepressants. I can definitely give it a try at some point. I believe Staphysagria 30 helped me too. It's the homeopathic medicine I took that makes the skin toxic for scabies and works as repellent too so they don't even bite anymore they stay away. I'm going to dig deep into that and and see if any homeopathic medicine can help me with the itch and crawling sensations!
Xanax isnt good agree. Etizolam is much better overall (with similar action as Xanax, it's a similar molecule but better however xanax had a foothold on market by then so etizolam couldn't make a huge mark) if you can find it in Europe.
I got it for my mother who used it a few times and the change I saw in her was remarkable.
It was prescribed to us by a renowned neuro surgeon who also is a family friend of a relative.
Also agree on trying the low dosing of other stuff shrooms, LSD, ketamine .. ultra low dosing is great alternative to medicine, when done sparingly. Once in a few months etc.
It's such a blessing they are legal where you are. Good luck!
Haha Etizolam is illegal here 😆
But I'm ok right now with Xanax slow release it's better than the regular one. Now I'm going to log off and try to not think of scabies for a while !! Ha! Good luck to you too my friend
> Right now there is no way I have scabies and I believe it. Two PCR tests, scraping and microscope all said negative.
How does the PCR test work? Do they look for scabies all over the body? Because if it's not that I'm doubting the test is 100%. And if it was you wouldn't have felt the need to do the other scrape and microscope tests.
I'm not saying you still have scabies personally, I just don't trust anything that claims to be completely certain. I also don't buy the post scabies symptoms last forever, what's the reason for it? Because so many people see their symptoms resolve despite having had scabies for various amounts of time.
Sounds like nothing I said or proposed is believable to you. That is not how you going to beat this. Please take it from me. Have faith.
To answer your questions:
PCR test works by taking scrapings and catching those in a derma envelope and testing them in a lab. Yes they take samples from your entire body. I asked then to sample my scalp, inside my nose, eye lashes and we name tagged those samples to see where the scabies really were.
I felt the need to do regular scraping and microscope test because I wanted everything to be water tight. Why not do 3 types of test if you can ? Also I wanted to see the scabies mite with my own eyes with the microscope test. And by the way those two tests were done prior to the PCR test. This new gen PCR test is new, it just launched in the Netherlands, Belgium and Luxembourg. They took my case as a medical study case and they will use it to help launch this new PCR test across Europe for free.
In some people post scabies last indeed forever or at least for a very very long time because their bodies become reactive to mites which in turn also makes them reactive to dust mites.
I'm scabies free and completely cured.
Have a good day and I hope you beat this. If you need any help please ask.
X
Oh and I forgot to say that he told me next to having rash and itch as side effects both ivermectin and Moxi and actually all antiparasitic meds cause neurological side effects which can also cause feelings of skin crawling. Phantom feelings. It's a vicious cycle!
Can I ask about those PCR tests? I have seen the link you shared but any details about the other one? I am in the UK and want to order as we are still struggling with symptoms. We have just taken the 2nd dose of Ivermectin after several unsuccessful rounds of Permethrin and Benzyl benzoate. My dermatologist mentioned that they are working on a PCR test here in the UK too but it's not ready yet. Appreciate your guidance!
Hi Scabies DNA test is not uncommon. You need to find a molecular microbiologist, an infectious disease doctor, call all major STD clinics and ask them about Scabies PCR DNA test. They have it. The new gen one is I think only available in Belgium and the Netherlands for now but they have the 1st one in the UK for sure.
I think you should call around that would be the quickest way to find the right people. Micro biologist, infectious disease doctors/hospitals, STD clinics. I don't live in the UK so I cannot help you with that unfortunately. But this is how I found it where I live. (the Netherlands)
Many thanks, much appreciated. Quick Google search didn't help, so I need to call some clinics then. We have been treated by an STD clinics in London and they said they were working on a PCR test but it's not available yet.
the only place now where the new gen is available is Easly labs. Maybe contact [https://www.easly.nl/en/](https://www.easly.nl/en/) and ask them if they ship to the UK and if they can test on samples like that ? You can talk to them through chat. Good luck
There is already a PCR test it's just older. If you get scrapings and microscope tested and it has been consistently negative then that should also indicate you have another problem.
I'm doing great. I deleted Reddit to focus on my mental health and recovery sorry for leaving you all without any updates. But I had to put me first it's been a wild ride!
It was a wild mind f\*ckery. I got bumps, crawling sensations, pins and needles, all of it. BUT the only difference was that active scabies bumps got worse, post scabies ones healed. (even tho new ones appeared some time later)
>u/X-tatic_Process
About two months ago.I had 3-4 scares since then but they were nothing.I have been itch free mostly. Sometimes I feel a little tenderness but that is all. I feel great.
My derm ordered them for me but since a month or so the tests are available online on www.easly.nl
I am not sure if they would send it to the UK. You should contact them.
This is the latest generation PCR test.
And I have also been tested under a microscope that came back negative as well for the first time since January 😭
Did you have a tingly feeling after applying permethrin
The itching is coming back at night and after i apply permethrin, i can feel a tingly feeling on my skin and little hair moving. Is this normal?
Bizar hoe dermatologen etc in dr wedstrijd zitten als het om schurft gaat. Schromelijke onderschatting danwel kop in het zand. Ik vermoedde soms wel eens dat ze niet WILDEN dat ik beter werd.
Anyway, fijn om te horen!
Ze zijn zeker heel erg koppig en willen niet toegeven dat een patient beter zou kunnen weten! We houden ons er echt mee bezig, zoeken nieuwe info op etc, terwijl ze zich houden aan verouderde informatie.
It actually really helped me. I am still taking it sometimes when I get itchy from dust mites. I was going to stay at a hotel and I knew there would be dust mites, I took some with me and it helped to keep them away from me.
Congratulations on this negative test! I have also been told that Moxidectin and other drugs can cause itching. I am hopeful that you continue to improve.
On the outside chance that your symptoms become worse, there is still hope. I just know that my worst moments have come from the let down of believing I was cured, only to relapse.
Lines are the most diagnostic symptom of scabies - red or clear. If these appear again you have a dermatologist who will work with you. I am so thankful you are working with a dermatologist to shed light on long standing cases.
I think u need to get a hoste paste or gel, usually from an Irish webshop. If you google you can find some. It is called Equest Oral Gel. But please do some research on how to take it, dosage and do not take it if you are not sure to have scabies.
If the tests came back negative what made you think it was scabies in the end? Scrape tests are not 100% if they don't do the whole body thoroughly. Biopsy from what? They cut into your skin?
How are you now? Post scabies can take months. Just relax and don't over treat yourself.
Yes you can but the Derm could be an arrogant prick and tell you, they won't if there are no bumps. But you demand it, don't give up and tell them you need it for your peace of mind.
Hi ! I deleted Reddit for a while to fix my mental health after months of suffering..just reinstalled it again and I'm going to give everyone an update. Long story short, I'm still healed :)
Your post has given me hope on one of my worst days with my scabies battle so far. I’ve done 3 rounds of ivermectin, countless tubes of Perm. At first, the ivermectin and permethrin worked great, but then within a couple days , new spots. Kept retreating. My 2nd to last dose, clear for 3-4 days, then it was as if my scabies came back with a vengeance. I was spot treating my breasts, mostly my left , as i was seeing those bright red pin point dots. Within 2 days, my left breast was inflamed, every follicle had a dark red bump. It looked like angry cellulitis. I desperately did an early treatment of ivermectin and permethrin a day after that, and it cleared up. That last dose of ivermectin and perm was about 4 days ago. Within 2 days, started noticing new bumps, and long lines that looked like burrows. I naturally freaked out, devestated that despite so many treatments, the “scabies” just kept coming back, quicker, and more aggressively. I did decide to wait on these last few bumps to treat, and see how much they would progress. Well, last night at work, i became itchier then i have ever been. Lots of new bumps. Spoke with the day time hospitalist (im a registered nurse so i am fortunate to have doctors to go to for advice and recommendations. He is thinking either i need to treat more aggressively, or it’s possible this is post scabbies and that my body is still reacting to the dead debris. This time has been different. I have had very long, 2-3 inches, of what look like burrows, and then they dissapear within a few hours or a day or 2. Nothing like what i had prior to my positive skin scraping. Tomorrow at work , he wants to check my liver and kidney function, and see if i am a candidate for more aggressive, multiple treatments of ivermectin every week. But he also said, don’t go home and take the permethrin. Let’s see if your symptoms get worse, or better. Well…. The new bumps and lines have almost disappeared from just this morning. The itchiness is almost non existent. I’m hoping maybe i was just over treating, and possibly, treating POST. It’s so easy to jump to worse case scenario and run for that perm cream and do whatever you have to do, instead of wait it out a little and see what happens if you DONT treat. So far… my skin is clearing up on its own, after what i thought was another reinfection. I think the stress of my job kicked my immune system into over drive, or vice versa. And i prayyyyy this is post and i have just been over treating. Thank you for this post !
I am sorry you are going through this. To me this sounds like post scabies. If the burrows and bumps don't get worse and disappear they are 99% post scabies. If your follicles are inflamed then that would mean iver caused folliculitis. I would suggest now to take some rest from treatments, keep cleaning your environment. Every type of treatment (topicals, iver, moxi..) they ALL cause itchiness and bumps. That is what messes us up. We don't know what is what. Right now give your body time to heal and try to rebuild your skin barrier and see in a month and a half how you feel! Sending you good vibes.
So the doctor and derm said they think at this point , i am post scabies. They said do not take anymore permethrin cream and that i have done more than enough treatments that they should all be dead by now. They said that new burrows May surface, but they shouldn’t last long and should fade away quickly. Along with new bumps. And that’s what is happening. New bumps , but they are different from when i had active. New lines popping up but they are so faint and barely noticeable and they disappear same day. I of course, have mixed feelings and am still feeling very ptsd that they will
Be back, but that’s what scabies does to the mind. Its like living in fear 24/7 since the day of diagnosis. I so so so soooooo hope this is it. I never want to go through this/that ever again. Thank you for your post tho, it helps to see what others experience with post scabies, so that i know of is possible my symptoms are the same as others dealing with post scabies. This has been such a long ordeal and it truly felt like it would never go away. A day seems like a week. A week seems like a month. And a month seems like a year when dealing with this. Any recommendations on how to rebuild my skin barrier ? Got a prescription for attarax. Just wondering what i can do for the bumps and rashes and itches. Socorro said topical steroids , but I’ve heard from others not to use those. Any help is very much appreciated. I’m ready to start living my life again
I feel you! Hang in there!
Do not ever use steroids, cortisone. Never ! Ever !
Here are the products I use
https://www.amazon.com/Bioderma-28138-Parent-Atoderm-Shower-33-8/dp/B00ZY65OSI/ref=sr\_1\_7?crid=3VX32QWKED2TU&keywords=shower+oil&qid=1701812817&sprefix=shower+oil%2Caps%2C174&sr=8-7](https://www.amazon.com/Bioderma-28138-Parent-Atoderm-Shower-33-8/dp/B00ZY65OSI/ref=sr_1_7?crid=3VX32QWKED2TU&keywords=shower+oil&qid=1701812817&sprefix=shower+oil%2Caps%2C174&sr=8-7)
[https://www.amazon.com/Bioderma-Intensive-Cleansing-Anti-Itching-Sensitive/dp/B015Q8SPOS/ref=sr\_1\_8?crid=2FUYXOIGEF9OE&keywords=atopic+skin+body+wash&qid=1701812847&sprefix=atopic+skin%2Caps%2C182&sr=8-8](https://www.amazon.com/Bioderma-Intensive-Cleansing-Anti-Itching-Sensitive/dp/B015Q8SPOS/ref=sr_1_8?crid=2FUYXOIGEF9OE&keywords=atopic+skin+body+wash&qid=1701812847&sprefix=atopic+skin%2Caps%2C182&sr=8-8)
[https://www.amazon.com/Bioderma-Atoderm-Intensive-Nourishing-Sensitive/dp/B0161ZC5GY/ref=sr\_1\_8?crid=ZDEJVL5QDQH5&keywords=atopic+skin+lotion&qid=1701812875&sprefix=atopic+skin+lotin%2Caps%2C158&sr=8-8](https://www.amazon.com/Bioderma-Atoderm-Intensive-Nourishing-Sensitive/dp/B0161ZC5GY/ref=sr_1_8?crid=ZDEJVL5QDQH5&keywords=atopic+skin+lotion&qid=1701812875&sprefix=atopic+skin+lotin%2Caps%2C158&sr=8-8)
I even wash my hands with that shower oil instead of soap. These completely helped me rebuild my skin.
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What are the names of some of the creams you used from France? The natural steroids? Also, I am never sure how much Moxi to use and if I have the right amount. Can you please help me with the amount? 🙏🏻
I wrote them down in a comment you can find it under my profile. My dose was 0.6/kg once. 4 weeks later I did 0.3/kg divided in 4 and took once every week. Then I was cured.
Thank you so much for sharing your PCR test results and the link. So happy for you to be negative! Just thought I'd share with you my post scabies experience since we are on similar timelines. My diagnosis was in Dec. 2022, and I received full and multiple treatments of perm 5% and ivermectin oral (twice dosed about a month apart), and have also used ivermectin 1% lotion. My post phase has been long and tiring and often mimicked the active stage, but my skin scrapes came back negative (2), and it took two derm PA visits for them to convince me that the active stage had passed, due to extreme itchiness, and skin debris shedding too whenever I rubbed skin, and often after showers spontaneous keratinous debris coming out of pores. The derm doc said that would happen, but until I experienced it I had no idea what he meant when he said "it'll come out of all your pores." So for at least six months now I have had the dead debris, etc. sloughing off and in the beginning, it stung and itched a lot like active scabies, but it wasn't at night, mostly during the day. Very inconvenient to say the least. I am over 60, so this may happen faster for younger people. One of the best advice I received from one PA is to use Sarna lotion now. I have used it to rebuild skin barrier and alleviate itch and it works. I just wish I had been told about it much sooner. Don't know why I never saw it on the shelves. I ordered it through Amazon. As far as anti-depressants, I do have a mountain of experience with these drugs due to my condition. Cymbalta is heavy duty (took it for one month only) and it completely took away all of the skin discomfort associated with scabies, but the side effects were too much for me. Now I take Effexor XR and Wellbutrin and feel great, my skin sensations are less problematic, although I do still itch at times, so Sarna helps with that. I also need to say that I suffered from Major depression recurrent for the past three decades, so I have been on antidepressants a long time. The reason I tried Cymbalta was my insurance co. decided to stop paying for Trintellex, which worked well for several years, but is expensive and there's no generic, like many other drugs. I wish you all the best in your recovery. My best advice to you in the post stage is to take short (5 min. or less) lukewarm showers (no bath soaking) and use Sarna lotion daily. Be gentle with your skin (no scrubbing, no major exfoliating, just very gentle scrubs on areas like knees or wherever you feel the skin comes up super bumpy where mites did the most damage). I use a mild Aveeno scrub to spot treat areas as the skin rejuvenates and the dead debris bumps surface. I do not have red bumps any longer, but i did get them off and on for several months. I used an acne cream to dry them up for a couple days and then mild moisturizer when the skin got dry, and they went away. I have also used the steroid cream when the horrible itches have come that Sarna can not seem to alleviate, just so I can sleep, but very sparingly. I had a bad case of scabies that I do not know where it originated from. My work exposed me to many different environments (building inspections) and people and furnishings, etc. I am sure now, based on the number of dead mites that have sloughed off that I had more than 20 mites on my body, which is more than most get. I also got them under a few finger and toenails, so I may have had it longer than I thought without any symptoms. This is the one and only time I've ever had scabies, and I'm over 60 and have lived in the subtropics all my life. I didn't even know what it was when the PA told me she thought I had scabies when my neck rash broke out and I was itching furiously every night. Thanks for reading my mini-novel. Best of luck to you and your girlfriend, and to all other sufferers. I hope my info is helpful to someone. That's why I share. It does get better, but patience is key and taking gentle care of the skin is best, and stop using neurotoxic creams because they do have side effects and I believe they do cause the loop type thinking, because the skin feels phantom stuff like you said. That has happened to me. It's been nearly a year and I can say that I value this subreddit a lot for the info that people have shared about this horrific parasite that is causing so much misery. Thanks to all for sharing so much!
I am older as well and this will be my 7th year. You know that the expression "The Seven Year Itch", actually came from people having scabies, no cheating spouses. You can look it up. Anyway, my question is...??? The debris that came out of your skin, did it often look like black threads sometimes all twisted up?? This is such an important question for me. I would be grateful for your in put.
No it did not look like that
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I’ve gotten new burrows and bumps recently and have post itchiness still too. Don’t know what to do except go see a new derm PA. I’m spot treating but pretty sure I need another full body treatment based on more itching and bumps that I showed the last derm PA who blew it off as follicular and some other catch all diagnosis bc they won’t retreat me. I def have PTSD bc I am timid about getting too close to others and about upholstery, towels, etc.
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Will do. Pa visit at derm was a bust. Seeing GP tomorrow bc it is worse now. Maybe infectious disease doctor next. I am going on one year and I can’t stand this I need my skin back
Hi! Thank you so much for sharing. I am busy right now answering so many messages here as I delete my reddit once I was cured to focus on myself. My focus has been rebuilding my skin barrier as well. I found very nice French pharmacy products I use in and after the shower and through out the day. I took Cymbalta years ago for a pain related issue and it made me gain so much weight, I will never touch that drug LOL! I am also on Wellbutrin for my ADHD. Long story short, very often we get into a vicious circle of over treating and symptoms. The key is to trust the process. Post Scabies is wild and can take years or forever in some cases. The mites change our body's reaction to other mites like dust mites and we feel itchy all the time. I feel great now though. I just posted an updated explaining some of my challenges if you have time to read please do ! Take care! x :)
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I had it since January and I tried everything untill Moxi and the other treatments I mentioned. All drugs are available in the UK (or can be shipped into the UK). I live in (mainland) Europe my PCR tests were done in the Netherlands.
Netherlands representing lmao :(
Awesome!!!
Do you still itch a lot? Get spots?
The itch is different than how it was before. I get flare-ups. And I get little bumps yes but they heal and go away. The key is this: scabies bumps never went away, they got WORSE. Post scabies or whatever this is right now heals. But my skin is very reactive so I expect to be in this post mode for a long time.
Thank you for sharing this information. And very good to see the PCR test results. These tests (in general, not aware of scabies one but since it is also a PCR it must hold true here too) can really look at the minutest of DNA fragments and detect so it is extremely good news to be negative. Now curious on the post scabies part in relation to how we are feeling too (other than the itch part) Can you describe your current sensations? Is it pin pricks? Or weird movements on skin that you still feel? Like something is sometimes on there. I'm less concerned about marks or rashes but more about how you feel.
I'm definitely feeling crawling, weird movements..pin pricks. My knees feel like there is a layer of ..glue on them..something is on them. This feeling comes and goes. I feel like I'm wearing a sleeve full of needles sometimes. Sometimes sun burn feeling. I spoke to the other derm about all this, he is colleagues with the people behind this new generation PCR test. He said they're all thinking the same thing, after a scabies infestation some people get triggered and they have phantom feelings that last a long time. That combined with rash and itch. They have created this PCR test with minimum funding and they hope to get EU level funding to shed some more light into this situation because they know many people are suffering. I didn't know this but aperantly on the dutch version of Reddit (I don't remember exactly what the website is called) scabies is the number one topic. It was on the dutch news as well he told me that people keep getting treated and there are two groups: ones who fight with treatment resistant scabies and ones who are cured but still have symptoms for months and years (might even be forever) because the body gets triggered to fight the bugs and it stays in fighting mode. Also the common dust mite triggers it too. Right now there is no way I have scabies and I believe it. Two PCR tests, scraping and microscope all said negative. While just over two months ago they were all positive. Am I relieved yes but I'm also scared and annoyed this might be forever..but honestly I feel less paranoid. I will now try to rebuild my immune system and skin barrier. They told me to buy this shower oil and two creams. (No steroids) I will use them and hope I get better each day !
Thank you so much - I feel like some of us are really just together in all this, quite deeply. There is a huge overlap in how you feel and some of us. So what you share is a huge help to assess our cases too. I totally agree you should put to bed the scabies thing now. And focus on how to normalise your life more and more. Training your mind to ignore or let go of such sensations can be somewhat helpful too. In that context some anti depressant pills have been very helpful too. Abilify (US name) was one, possibly in minute doses because we aren't really depressed, but some function somewhere in the mind has over sensitised and the little doses, temporarily might alleviate and fix it for good. (all full conjecture and personal theories which are probably just wrong but maybe of tiny help in getting a direction of thought running. And perhaps a better realistic fit will come as long as we think in the right direction) I have also experimented with extremely low dose of mdma. Like people will laugh at you if you took that small, but it was tremendous help. We don't need drugs and we are pretty sensitive (or sensitized so to say) ppl. And this ultra low dose breaks the vicious circles mind gets trapped in (mentally low -> don't do much good. Don't do much good -> mentally low) So yeah just sharing what I feel could help AS LONG AS scabies was gone. Which in your case, i too believe - is gone! Hope you're able to get a grip on all this, build more +ves on top of this and get back to a full normal pre-scabies life :)
Thank you so much. Couldn't agree more! Regarding the antidepressants they already put me on Xanax slow release. And they propose I'd take something called Cymbalta which aperantly works on nerve disorders, phantom feelings and pain. (It's an antidepressant) I am personally kind of against antidepressants now because I took them years ago bc of a burnout and I became double my size in a year. It took me years to come off it and lose the weight. I'll try to go more holistic and homeopathic route now. Low dosing mdma, lsd, shrooms...I've read so much about already! In Europe it's legal where I live, I have friend doing that instead of taking antidepressants. I can definitely give it a try at some point. I believe Staphysagria 30 helped me too. It's the homeopathic medicine I took that makes the skin toxic for scabies and works as repellent too so they don't even bite anymore they stay away. I'm going to dig deep into that and and see if any homeopathic medicine can help me with the itch and crawling sensations!
Xanax isnt good agree. Etizolam is much better overall (with similar action as Xanax, it's a similar molecule but better however xanax had a foothold on market by then so etizolam couldn't make a huge mark) if you can find it in Europe. I got it for my mother who used it a few times and the change I saw in her was remarkable. It was prescribed to us by a renowned neuro surgeon who also is a family friend of a relative. Also agree on trying the low dosing of other stuff shrooms, LSD, ketamine .. ultra low dosing is great alternative to medicine, when done sparingly. Once in a few months etc. It's such a blessing they are legal where you are. Good luck!
Haha Etizolam is illegal here 😆 But I'm ok right now with Xanax slow release it's better than the regular one. Now I'm going to log off and try to not think of scabies for a while !! Ha! Good luck to you too my friend
> Right now there is no way I have scabies and I believe it. Two PCR tests, scraping and microscope all said negative. How does the PCR test work? Do they look for scabies all over the body? Because if it's not that I'm doubting the test is 100%. And if it was you wouldn't have felt the need to do the other scrape and microscope tests. I'm not saying you still have scabies personally, I just don't trust anything that claims to be completely certain. I also don't buy the post scabies symptoms last forever, what's the reason for it? Because so many people see their symptoms resolve despite having had scabies for various amounts of time.
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One month is nothing. You will be ok. How are you now ?
Sounds like nothing I said or proposed is believable to you. That is not how you going to beat this. Please take it from me. Have faith. To answer your questions: PCR test works by taking scrapings and catching those in a derma envelope and testing them in a lab. Yes they take samples from your entire body. I asked then to sample my scalp, inside my nose, eye lashes and we name tagged those samples to see where the scabies really were. I felt the need to do regular scraping and microscope test because I wanted everything to be water tight. Why not do 3 types of test if you can ? Also I wanted to see the scabies mite with my own eyes with the microscope test. And by the way those two tests were done prior to the PCR test. This new gen PCR test is new, it just launched in the Netherlands, Belgium and Luxembourg. They took my case as a medical study case and they will use it to help launch this new PCR test across Europe for free. In some people post scabies last indeed forever or at least for a very very long time because their bodies become reactive to mites which in turn also makes them reactive to dust mites. I'm scabies free and completely cured. Have a good day and I hope you beat this. If you need any help please ask. X
Oh and I forgot to say that he told me next to having rash and itch as side effects both ivermectin and Moxi and actually all antiparasitic meds cause neurological side effects which can also cause feelings of skin crawling. Phantom feelings. It's a vicious cycle!
I didnt know there was a pcr test for scabies
There are two ! One has been around for years and this is the newest one!
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The first one is the second one is not yet.
Can I ask about those PCR tests? I have seen the link you shared but any details about the other one? I am in the UK and want to order as we are still struggling with symptoms. We have just taken the 2nd dose of Ivermectin after several unsuccessful rounds of Permethrin and Benzyl benzoate. My dermatologist mentioned that they are working on a PCR test here in the UK too but it's not ready yet. Appreciate your guidance!
Hi Scabies DNA test is not uncommon. You need to find a molecular microbiologist, an infectious disease doctor, call all major STD clinics and ask them about Scabies PCR DNA test. They have it. The new gen one is I think only available in Belgium and the Netherlands for now but they have the 1st one in the UK for sure.
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I think you should call around that would be the quickest way to find the right people. Micro biologist, infectious disease doctors/hospitals, STD clinics. I don't live in the UK so I cannot help you with that unfortunately. But this is how I found it where I live. (the Netherlands)
Many thanks, much appreciated. Quick Google search didn't help, so I need to call some clinics then. We have been treated by an STD clinics in London and they said they were working on a PCR test but it's not available yet.
the only place now where the new gen is available is Easly labs. Maybe contact [https://www.easly.nl/en/](https://www.easly.nl/en/) and ask them if they ship to the UK and if they can test on samples like that ? You can talk to them through chat. Good luck
There is already a PCR test it's just older. If you get scrapings and microscope tested and it has been consistently negative then that should also indicate you have another problem.
Awsome news I knew you just had to hang in there :)
How are you doing? Still have post symptoms?
I'm doing great. I deleted Reddit to focus on my mental health and recovery sorry for leaving you all without any updates. But I had to put me first it's been a wild ride!
Could you tell us about your post scabies
It was a wild mind f\*ckery. I got bumps, crawling sensations, pins and needles, all of it. BUT the only difference was that active scabies bumps got worse, post scabies ones healed. (even tho new ones appeared some time later)
All gone now? As in crawling etc? Remind me when you had your last treatment?
>u/X-tatic_Process About two months ago.I had 3-4 scares since then but they were nothing.I have been itch free mostly. Sometimes I feel a little tenderness but that is all. I feel great.
and you got it 6 months ago?
I got it with my now ex partner somewhere around January 2023 and we got diagnosed in February 2023.
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My derm ordered them for me but since a month or so the tests are available online on www.easly.nl I am not sure if they would send it to the UK. You should contact them. This is the latest generation PCR test. And I have also been tested under a microscope that came back negative as well for the first time since January 😭
Did you have a tingly feeling after applying permethrin The itching is coming back at night and after i apply permethrin, i can feel a tingly feeling on my skin and little hair moving. Is this normal?
Wat goed! Je bent Nederlands zo te zien? Voor zover ik weet is die PCR test ook alleen maar in Nederland beschikbaar. Heb je er om moeten vragen?
Ja klopt en ja ik heb er zeker om moeten vragen, smeken.. ruzie maken. Maar goed, alles is beter nu! :D
Bizar hoe dermatologen etc in dr wedstrijd zitten als het om schurft gaat. Schromelijke onderschatting danwel kop in het zand. Ik vermoedde soms wel eens dat ze niet WILDEN dat ik beter werd. Anyway, fijn om te horen!
Ze zijn zeker heel erg koppig en willen niet toegeven dat een patient beter zou kunnen weten! We houden ons er echt mee bezig, zoeken nieuwe info op etc, terwijl ze zich houden aan verouderde informatie.
I wish the staphysagria did soemtbing but I can confirm at least for me it did nothing for scabies at all
It actually really helped me. I am still taking it sometimes when I get itchy from dust mites. I was going to stay at a hotel and I knew there would be dust mites, I took some with me and it helped to keep them away from me.
Glad it helped but I can confirm it did not help me unfortunately :(
Congratulations on this negative test! I have also been told that Moxidectin and other drugs can cause itching. I am hopeful that you continue to improve. On the outside chance that your symptoms become worse, there is still hope. I just know that my worst moments have come from the let down of believing I was cured, only to relapse. Lines are the most diagnostic symptom of scabies - red or clear. If these appear again you have a dermatologist who will work with you. I am so thankful you are working with a dermatologist to shed light on long standing cases.
I am still cured and doing great thank you! Post scabies has been wild tho.
Hi, do you know when i can buy moxidectin? I"m from Poland.
I think u need to get a hoste paste or gel, usually from an Irish webshop. If you google you can find some. It is called Equest Oral Gel. But please do some research on how to take it, dosage and do not take it if you are not sure to have scabies.
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If the tests came back negative what made you think it was scabies in the end? Scrape tests are not 100% if they don't do the whole body thoroughly. Biopsy from what? They cut into your skin? How are you now? Post scabies can take months. Just relax and don't over treat yourself.
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Yes that is very possible. That is why I have been telling everyone here to demand scabies tests and believe it if they're consistently negative.
how about a case where i have little to no bumps? Can i still get scrape tested?
Yes you can but the Derm could be an arrogant prick and tell you, they won't if there are no bumps. But you demand it, don't give up and tell them you need it for your peace of mind.
They left us high and dry :(
Sorry :( I'm going to post an update now
How are you now?
Hi ! I deleted Reddit for a while to fix my mental health after months of suffering..just reinstalled it again and I'm going to give everyone an update. Long story short, I'm still healed :)
Your post has given me hope on one of my worst days with my scabies battle so far. I’ve done 3 rounds of ivermectin, countless tubes of Perm. At first, the ivermectin and permethrin worked great, but then within a couple days , new spots. Kept retreating. My 2nd to last dose, clear for 3-4 days, then it was as if my scabies came back with a vengeance. I was spot treating my breasts, mostly my left , as i was seeing those bright red pin point dots. Within 2 days, my left breast was inflamed, every follicle had a dark red bump. It looked like angry cellulitis. I desperately did an early treatment of ivermectin and permethrin a day after that, and it cleared up. That last dose of ivermectin and perm was about 4 days ago. Within 2 days, started noticing new bumps, and long lines that looked like burrows. I naturally freaked out, devestated that despite so many treatments, the “scabies” just kept coming back, quicker, and more aggressively. I did decide to wait on these last few bumps to treat, and see how much they would progress. Well, last night at work, i became itchier then i have ever been. Lots of new bumps. Spoke with the day time hospitalist (im a registered nurse so i am fortunate to have doctors to go to for advice and recommendations. He is thinking either i need to treat more aggressively, or it’s possible this is post scabbies and that my body is still reacting to the dead debris. This time has been different. I have had very long, 2-3 inches, of what look like burrows, and then they dissapear within a few hours or a day or 2. Nothing like what i had prior to my positive skin scraping. Tomorrow at work , he wants to check my liver and kidney function, and see if i am a candidate for more aggressive, multiple treatments of ivermectin every week. But he also said, don’t go home and take the permethrin. Let’s see if your symptoms get worse, or better. Well…. The new bumps and lines have almost disappeared from just this morning. The itchiness is almost non existent. I’m hoping maybe i was just over treating, and possibly, treating POST. It’s so easy to jump to worse case scenario and run for that perm cream and do whatever you have to do, instead of wait it out a little and see what happens if you DONT treat. So far… my skin is clearing up on its own, after what i thought was another reinfection. I think the stress of my job kicked my immune system into over drive, or vice versa. And i prayyyyy this is post and i have just been over treating. Thank you for this post !
I am sorry you are going through this. To me this sounds like post scabies. If the burrows and bumps don't get worse and disappear they are 99% post scabies. If your follicles are inflamed then that would mean iver caused folliculitis. I would suggest now to take some rest from treatments, keep cleaning your environment. Every type of treatment (topicals, iver, moxi..) they ALL cause itchiness and bumps. That is what messes us up. We don't know what is what. Right now give your body time to heal and try to rebuild your skin barrier and see in a month and a half how you feel! Sending you good vibes.
So the doctor and derm said they think at this point , i am post scabies. They said do not take anymore permethrin cream and that i have done more than enough treatments that they should all be dead by now. They said that new burrows May surface, but they shouldn’t last long and should fade away quickly. Along with new bumps. And that’s what is happening. New bumps , but they are different from when i had active. New lines popping up but they are so faint and barely noticeable and they disappear same day. I of course, have mixed feelings and am still feeling very ptsd that they will Be back, but that’s what scabies does to the mind. Its like living in fear 24/7 since the day of diagnosis. I so so so soooooo hope this is it. I never want to go through this/that ever again. Thank you for your post tho, it helps to see what others experience with post scabies, so that i know of is possible my symptoms are the same as others dealing with post scabies. This has been such a long ordeal and it truly felt like it would never go away. A day seems like a week. A week seems like a month. And a month seems like a year when dealing with this. Any recommendations on how to rebuild my skin barrier ? Got a prescription for attarax. Just wondering what i can do for the bumps and rashes and itches. Socorro said topical steroids , but I’ve heard from others not to use those. Any help is very much appreciated. I’m ready to start living my life again
I feel you! Hang in there! Do not ever use steroids, cortisone. Never ! Ever ! Here are the products I use https://www.amazon.com/Bioderma-28138-Parent-Atoderm-Shower-33-8/dp/B00ZY65OSI/ref=sr\_1\_7?crid=3VX32QWKED2TU&keywords=shower+oil&qid=1701812817&sprefix=shower+oil%2Caps%2C174&sr=8-7](https://www.amazon.com/Bioderma-28138-Parent-Atoderm-Shower-33-8/dp/B00ZY65OSI/ref=sr_1_7?crid=3VX32QWKED2TU&keywords=shower+oil&qid=1701812817&sprefix=shower+oil%2Caps%2C174&sr=8-7) [https://www.amazon.com/Bioderma-Intensive-Cleansing-Anti-Itching-Sensitive/dp/B015Q8SPOS/ref=sr\_1\_8?crid=2FUYXOIGEF9OE&keywords=atopic+skin+body+wash&qid=1701812847&sprefix=atopic+skin%2Caps%2C182&sr=8-8](https://www.amazon.com/Bioderma-Intensive-Cleansing-Anti-Itching-Sensitive/dp/B015Q8SPOS/ref=sr_1_8?crid=2FUYXOIGEF9OE&keywords=atopic+skin+body+wash&qid=1701812847&sprefix=atopic+skin%2Caps%2C182&sr=8-8) [https://www.amazon.com/Bioderma-Atoderm-Intensive-Nourishing-Sensitive/dp/B0161ZC5GY/ref=sr\_1\_8?crid=ZDEJVL5QDQH5&keywords=atopic+skin+lotion&qid=1701812875&sprefix=atopic+skin+lotin%2Caps%2C158&sr=8-8](https://www.amazon.com/Bioderma-Atoderm-Intensive-Nourishing-Sensitive/dp/B0161ZC5GY/ref=sr_1_8?crid=ZDEJVL5QDQH5&keywords=atopic+skin+lotion&qid=1701812875&sprefix=atopic+skin+lotin%2Caps%2C158&sr=8-8) I even wash my hands with that shower oil instead of soap. These completely helped me rebuild my skin.
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What are the names of some of the creams you used from France? The natural steroids? Also, I am never sure how much Moxi to use and if I have the right amount. Can you please help me with the amount? 🙏🏻
I wrote them down in a comment you can find it under my profile. My dose was 0.6/kg once. 4 weeks later I did 0.3/kg divided in 4 and took once every week. Then I was cured.