To want to just burn everything we own

[Livelovelaughfuckoff]

Scabies. DS first brought it home from uni last year and he has suffered for 9 months (doctors missed it for the first 3 months and took them another 6 to prescribe the correct dose of Ivermectin. This only happened because eventually (no idea how the rest of us swerved it for so long) DS then caught it at Xmas but they wouldn’t give ivermectin first had to try permethrin. Whole family treated washing and tumble drying everything or bagging it for seven days, hoover everywhere, steam cleaning furniture. Repeat the process a week later.

As expected the permethrin didn’t work for DS2 but the ivermectin has worked for DS1 so now DS2 has ivermectin and again the rest of us are having to do permethrin. So another two weeks of changing beds and towels every day for three days, bagging, washing, tumble drying and steaming. Tried to push for us to all have ivermectin but no go from the doctor.

So stressed and overwhelmed keeping up with the washing and bagging clothes. Have spent a fortune on extra clothes, bedding and towels as jus can’t get it all washed and dried for everyone to have a clean set of everything 3 days in a row and the repeat a week later.

DH is fucking useless at remembering to bag his stuff and refuses to buy more work trousers and I suspect is re wearing things rather than changing and bagging (he has no symptoms at all never had to be fair but still follow the bloody protocol to be safe!)

I’m feeling murderous right now. Please tell me anyone who’s had to do this that it goes eventually. Aside from the washing and cleaning nightmare DS1 has really suffered over the last 9 months mentally and DS2 has scratched his legs to the point of bleeding and looks so down.

@Livelovelaughfuckoff thank you hope all on the mend

Sounds utterly horrendous

I don’t get why they’re so weird about Ivermectin. When I was in Bolivia last year they sold strips of it for £3 at every pharmacy with no prescription.

Good grief - permethrin, as my old boss would have said ‘you might as well piss in its ear’.
Yes, I think GP’s aren’t particularly hot on dermatology full stop (generalisation obviously) but certainly have a blind spot when it comes to parasites.
Bugs are my bread and butter.

@BottomsByTheirTopsin the Facebook group some people have resorted to using animal medication, I’m just too much of an anxious bod to try it.

My GP better than dermos in my experience, I’m in Oz and have paid for rushed, dismissive appointments with dermos seeing my anxiety as a reason for my on going symptoms.

DS1’s first diagnosis from the GP was heat rash. In April 🙄

If I haven’t got scabies still how can medics explain this blood spot that appeared after a tiny pink prick feeling yesterday? Another one happened in for evening. I’ve got so much photo evidence, but apparently that doesn’t count 😩

We're onto about round number 5 of the cream - it kind of feels like we might be on the winning side finally - after three fucking months!

That’s great to hear! I’ve been told to stop treatment , but now as I guessed I would, I’m having constant outbreaks….back to gp on Friday, hoping for a definite diagnosis . Just need someone to believe me, husband won’t treat or believe I’ve got it due to misdiagnosis x2!!!

I don’t think I’ll ever escape this condition, the nightmare just gets worse.

Husb

DS seems to have got on top of infection, he is now 7 months in. Most of the lesions on his torso and legs have gone but is still having minor outbreaks on hands and feet. This week the combination of athletes foot ( he’s very sporty) and minor outbreak on his feet lead to cellulitis. I had to make a mercy dash to his uni flat with antibiotics. My job means I can prescribe for him or get a colleague to prescribe for him. He’s in Wales so would probably have been waiting for several days to see a GP and he was reluctant to spend a day in A&E despite me assuring him it was a genuine emergency.
Fortunately my rapid reaction have resulted in a quick response to the antibiotics. The constant scratching had opened up the skin and lead to a staph infection.
He now has a strict regime to add to the scabies treatment.
It has been a nightmare for him. And resulted in him reluctant to socialise. He is going to fail his second year because he didn’t want to expose others so stopped attending lectures. There are other issues ( nothing to do with his course) so hopefully they will let him retake the year.
He was home last weekend and seems to have turned a corner with his mental health. He honestly has felt like a leper for the last 6 months.

I have also resorted to mixing up a concoction of benzyl benzoate and almond oil in attempt to eradicate the mites. We have exhausted the normal meds. At least the home mix also stops the itching.

I caught it at uni from a placement, I used the cream but also hot washed everything ad sprayed my uni room with specific essential oils ( including camphor) I think I left the room for a good few hours after ( and I may have got a new mattress - it was a long time ago!) but it shifted them and I’ve never had them back!

good luck op it’s a massive undertaking!

So sorry to hear this, I think I’ve got other skin issues due to the scabies that I’ve currently been told isn’t and not to treat.

When I finally do get another confirmed diagnosis I’m going to get BB script from gp.
Relatives from uk coming to stay with us in October,I feel sick at the thought of giving it to them!
Sounds like you’ve been an amazing support for your son.🫶

I have wondered at times if he actually has had scabies but the initial treatments cleared up the lesions rapidly, but it didn’t seem to stop longterm recurrence. Having done a bit of research online it does appear that the NHS guidance is over simplified and doesn’t really address the possibility that the scabies mite is becoming resistant to standard insecticides currently in use.

DS picked it up in Eastern Europe where it is endemic and probably exposed to insecticides much more frequently so the mites he picked up are more likely to be super mites. With so much international travel it’s probably only going to get worse in students and young people who are more likely to have the physical contact required to pass it on.

@Crwysmam- no idea where I picked it up from, I’m the mum of a uni student!
Anyway I’m at the GP’s surgery now, hoping to get bloods done and a scraping….I’m more likely to get sectioned, they just think it’s my anxiety now!

@Livelovelaughfuckoff I thought of you yesterday, went to GP again with what I thought was concrete evidence only to be told I must have scratched myself, scabies don’t move in straight lines ( mark wasn’t straight) and I’ve now been diagnosed with dermatitis. Gp is lovely but I’m sure he’s only used to classic scabies. Anyway I remembered you saying it took 9 months for the medics to finally believe your son, I feel like I’m going mad!

I had other evidence too, and these random scratches that honestly just pop up are freaking me out.

I’m not meant to treat, but I’m still applying permethrin to the red marks, scratches and itchy/non itchy bumps that appear. It’s so hard not been believed, but thanks to you I know I’m not the only one it has happened to.

Will sadly just have to see if my son gets it now he’s home, which is not how I want to be diagnosed as still having it.

We’ve each had a round of cream (permethrin stuff) and since I’m the only one with symptoms I’ve paid privately (£400!!) for the two doses of ivermectin. It’s 3 weeks since last tablet taken and I’m itching so much! No one else has symptoms. We did all the washing/bagging. Only thing I didn’t do was bag up youngests’ cuddly toys as he was distraught at not having them.
could I still have them?? Lots of little itchy bumps appearing all the time but not in hands/feet cracks and never seen any wiggly line burrows! But defo scabies at PIL have had them since Jan! Help!!

We had to have 2 doses of ivermectin, as the first dose doesn't always kill the eggs, which then hatch and continue the cycle.

The advice is a repeat dose 10-14 days after the first dose if more marks are appearing and it is definitely scabies.

Post-scabies itch can go on for weeks but you shouldn't see new lines and dots if treatment has been successful and the scabies are gone.

Think also about shoes, covering car seats etc.

We also found derbac M helpful.

@SofaSoFood i had the two doses of ivermectin, 7 days apart. Do you mean I should maybe have a second full round?

Ive just ordered the derbac m liquid and will try that too. DH is against us all treating again as neither he nor the kids have any symptoms and it was extremely frustrating doing all the washing/drying. He is a SAHP so did it while me and the kids were at school.

it’s been 3 weeks since I took the tablets and we all did the Lyclear, but I am still itching terribly. I’ve never had the typical lines or the dots though.

Ah right, I thought you'd just had one dose, not the two. We had a mix of dots and lines. I had various GPs throughout the 6 months it took to get out of the house, the last one was particularly good and also prescribed stronger anti histamines for the itch

@DoctorsKitI’ve written 2 lengthy replies but lost them and now got to go out.
Just wanted to say my husband initially did a few half hearted attempts at treatments in November when I was diagnosed, then it didn’t go and medics are claiming it has so he won’t treat at and won’t even let me mention scabies.

Such an isolating experience, lack of partner support makes a difficult situation even worse.
Eventually I’ll prove I still have it to the medics and will at least be allowed to ask husband to help me make huge bed and apply the Derbac M I have secretly stashed away that I got online (I’m in Aus). Husband makes excuses for any rashes I dared to point out on him, as long as he can drink heavily each day and play golf/go to pub at weekend he doesn’t care.
Apparently I no longer have scabies it’s just anxiety according to my husband, medics now says it’s post scabies dermatitis , oh yes and not forgetting insect bites , acne Roseca ,folliculitis and eczema I’ve been told it is.

Medics only seem to understand classic scabies! Pretty sure my chronic scabies is due to husband’s lack of cooperation.

Good luck!

I thought this burrow would finally get me believed, GP said I must have scratched myself…I honestly didn’t!

Gosh I had no idea scabies was on the rise in humans. You poor things, I sounds just awful.
I work in veterinary and very rarely see scabies in dogs (Fox mange).
We have a different class of drugs available now and the response is excellent compared to when I first started out

We've had a few new bites/burrows (GP has one who is fascinated by skin mites and stuff and brought his microscope in to give DH a viewing)... I'm now adopting a "nuke the bastards from orbit on sight" approach and doing a full treatment every time we see any evidence... seems to be working as the intervals between reappearances have gone right up but it's a fucking miserable existence.