Joining the club

Hey everybody, today is the day I give up on the doctors and start doing it my way. I thoroughly appreciate all the information on here and will hopefully start to see some results soon. I have been experiencing symptoms for roughly 18 months now, for the first 6 months it was just the occasional lump on my forehead that would blow up at work and be irritated by my hard hat and get up to approx 50mm (2") in diameter and weep and crust and weep for days then heal over. After a few months it slowly spread to the rest of my face. One difference I seem to have to most of you is that I get a few on my body also. Another thing is the ones I regularly get come back in the same place usually leave lumps under my skin, after what I have read on here I am wondering if that is actually blockages in my lymph system and that’s what causes them to keep coming back in the same place and with the most severity every month or so.

Done all the usual Dr visits, biopsies, swabs, dermatologist visits like the rest of you with no luck, tried sulphur cream, foban cream, metronoidazole, doxycyclene, and various others. Have done a short dose of ivermectin (stromectol tablets) on their own which had the most effect but it only lasted a few weeks at most. Have ordered some 1.87% horse paste of amazon as I can’t get Soolantra in new zealand, also got more stromectol to pick up tomorrow and picked up some sudocrem today as some people have found that made the last little difference to clear them up. Naturally talking to my doctor about experimenting on all of this on my own was a rather unproductive conversation as she couldn’t be seen to be encouraging me, alas she could sympathise that it’s now at desperation point.

I’m a 24 year old male with a slim build, 5’9" and 154lbs, workout regularly, lacking greens in my diet but otherwise healthy with no real deficiencies, normal blood sugar and low cholesterol. Work in a hot and dusty environment at an Aluminium smelter.

The below photos are by no means the worst I’ve had it, I’ve been too vain to take photos when it has really fired up. You all understand how much it knocks over your self esteem.

Hi There, sorry to hear of your struggles. Unfortunately they are very familiar for all of us. I have a couple of questions for you.

  1. Can you feel them before they erupt, a tingly feeling like a cold sore?
  2. Do you eat a lot of sugar, bread or drink heavy beers / IPA’s?

The only thing that works for me is Fluocinonide, a topical steroid cream that I’ve used for years. I can usually feel them as either a tingle or an itch right before they come to the surface of my skin. I have tubes of this cream everywhere, desk, car, jackets… you name it and rub it onto the area immediately, This works extremely well but you have to keep applying it, depending on the severity of the sore.

I also found that if i eat a lot of sugary/high carb foods, bread (basically sugar) chocolate, ice cream, heavy beers… ETC. that i can expect several new sores in the next day or so and as you said they’re usually in the same place. Try cutting a few things out of your diet to see if it makes a difference, sugars / carbs causes inflammation in your body and I’m convinced it has a lot to do with my sores. If you can get Fluocinonide, give it a shot, it works for me.

Good luck! Ed

1: Yes I can, usually only the larger ones, the small white head sized ones usually come and go without too much fuss. Light pain, tingly sensation plus itchiness is usually the tell tale sign followed soon after by the redness and inflammation.

2: Don’t drink alcohol and am dead set against taking any form of drugs or prescription medication under normal circumstances, this is purely out of desperation. As for sugar, I’ve always been around 4.5-5.5 when tested in the past. I don’t have much in the way of chocolate or candy in the house, the odd bit of home made fudge or something here and there. Half of my drinks are sugar free and I’ve been making more of an effort to dilute my supplement drinks by approx 30%. I have bread for lunch most days but typically only 2 standard size buns, no cereals or anything else like that.

Half of my drinks are sugar free!!! - you wrote this.

This is your trigger, for people like us this is a definite no no fella, it’s actually better that you take normal drinks than sugar free as the active ingredient in these products seem to heighten this condition. Also I’ve found personally that if my skin is injured in the same place that I’ve had these things then they quickly revert from an injury to a sore really quite quickly so I’d advise you try and cover the front of your hard hat with something soft and that should help immensely.

Good luck fella :+1:t2:

Cheers, It’s worth a shot, I had read your comments about aspartame yesterday so will have to give it a go. One of the worst ones I have for flaring up repeatedly is on my jaw line, blows up to be a minimum of 30mm each time and it flares up every month without fail, takes almost 2 weeks to heal. I use a sweat band in my hard hat and try to change it at least once a week, largely due to how disgusting it gets with the amount of fluid that it soaks up out of the lessions. My other issue is spreading it from shaving as it’s a work requirement to be clean shaven for having to wear respirators in certain areas, luckily I manage to get away with not having to shave every day.

mine look exactly like the last picture only they are in my nose! Small clusters, always in the same spot

I had exactly what you had for around 12 months, my trigger was Coke Zero which contains aspartame, I was trying to be more healthy by cutting out full fat Coke… Big Mistake.

I have now cut out all products that contain aspartame and used solantra for first 6 months, applying it to problem areas on my forehead and nose.

It’s been over 6 months since my last lesion! Good luck and I hope you find your cure soon.

Guess I’ll have to find a new home for a few bottles of pepsi max, I’ve had no sugar coke for more or less my whole life. Appreciate the input guys.

Not much people have reported to use oral ivermectin without topical ivermectin. Interesting to read that it is somewhat effective.

Note that topical ivermectin can cause a breakout. So you may want to read Bad first reaction for advice to reduce it.

The environment in which you work may also play a role. At least in my situation things like sawdust and wearing things that pressurize the face (such as protection googles and masks) can cause breakouts.

Soolantra (topical ivermectin) can easily be worn in public, but I’m not sure if horse paste (topical ivermectin) is also that easy. But Sudocrem cannot be worn in public (at least not when you apply the amounts that I did).
You could also combine things with a moisturizer, like in Skin hydration & Moisturizers
Especially when you are working in a possible problematic environment, then hydration and protection of the skin may be extra important.

Oral ivermectin with sulfur cream only seemed to do anything for about 3 weeks and then it went back to the way it was before.

The sudocrem I have been putting on rather sparingly with a damp face and after a few minutes you can’t really tell, I have a decent tan so a few shades whiter doesn’t do me any harm.

Still waiting on the horse paste to try, probably be 2-3 weeks before I can get the good stuff, they only sell 0.4% here in NZ, should have that either tomorrow or Monday.

I use a skin repair/moisturiser cream most days and multiple times a day after a major breakout to help my skin heal and avoid the dry flakiness that always follows with the dead skin falling off.

I was using a lot more Sudocrem per application, so that it formed a thick layer from which the skin isn’t visible at all. So even if you would have a very dark skin, the face would look completely white. (Which makes it impossible to go outside your house without people looking at you.)

Fair enough. I have found the sudocrem has made a significant improvement in dealing with the lesions when they come through but has had very little impact on the frequency. I have completely removed all sugar free drinks from my diet and have just started using the lower % horse paste I can buy here in NZ. Still waiting on the good stuff to arrive from the USA.

How is your skin doing now?

It appeared as though it had been clearing up and then I got a cold and flared up pretty good for the last week or two so will see if it starts to clear up again now. Still waiting on the higher % horse paste to arrive before I start the stromectol.

Tso your using too much Sudacrem, your not meant to put it on like a paste, you need to use like literally a nail head and rub it in well, if you’ve done this right then it won’t be visible but will form a protective layer.

Good luck

Irish :shamrock:

The last 2 weeks has just been one major blow out after another, removing aspartame has made no difference. My skin is the worst it has been and I was supposed to be going out to a big event tomorrow night but I’m about ready to admit defeat as I feel another one coming through beside my mouth which is already about 20mm in diameter as well as the one on the other side of my jaw that is 50mm long, 20mm wide and about 10-15mm thick of fluid. Not counting the other dozen that are coming and going as I type this. Need to chase up where my 1.7% horse paste is over the weekend as it still hasn’t shown up, don’t you love international freight.

Safe to say that with how my face is I’m not going anywhere but to the urgent doctor tonight to try and put some more pressure on someone to actually try something. Having photos to remind you of what it was like before being stuck with this condition is a wonderful thing at times. Just about to follow up with Amazon as to where my horse paste is at, presumably lost in transit as it was last shown as being in LA 3.5 weeks ago.

I can only hope this is the 0.4% ivermectin horse paste I am using starting to do its job but It’s hard to feel very optimistic

I would expect that 0.4% would still be effective. Soolantra contains 1% and even applying a low amount of it, seems to be effective.

How are you applying the horse paste? You could try this before bedtime:

  1. Wash the face with water or something mild.
  2. Dry the face a bit, but not too much. If the face is still a bit dampen, then it may be easier to apply the paste.
  3. Apply some at the left cheek, right cheek, nose, chin and forehead. (Even when there are no lesions.)
  4. Spread it your fingers over the areas. Avoid eyes and lips.
  5. Let is on your skin for 5 minutes, so that it can be absorbed a bit.
  6. Apply a moisturizer over the face, with the paste still on the face. So that the skin won’t dry out and stays protected and moistured.

Topical ivermectin often makes things a bit worse by a temporary breakout.

I’ve been on the 0.4% for over a month now and used it twice a day for the first 2-3 weeks, morning and night after a shower or face rinse. I’m continuing to use it once a week at this stage and I don’t use anything else on my skin for at least half an hour afterwards to let it absorb. Hopefully the stronger stuff will be here soon now that they have located it.

Thankfully the ones either side of my chin are now well on the way to healing up, I find it hard to get all the fluid out of the larger ones before my skin heals. Then tend to heal over with a slightly red lump that lingers under my skin unless I “dig” it out later on. If I continue trying to empty them out they take forever to go away.