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@25years Just wanted to update you & everyone else who still reads on here. As I've mentioned before, my initial "lesions" were always on my neck. After time they gradually started appearing more along my jaw, and the final straw was when I had one pop up on my face. I got to the point where whatever I was using was clearing the older lesions up, but now I was constantly getting new ones. The never-ending cycle. I finally broke down & went to the dermatologist yet AGAIN. I went to a new dermatologist because all the prior ones were useless. I broke down crying in the office because...well anyone who is dealing with this knows why. I'm pretty sure she just thought I was emotional, but the difference was, she actually offered something the other dermatologists didn't. She proposed I go on isotretinoin (more commonly known as Accutane).
Obviously, she thought I'm simply suffering from acne. And while I've had acne before, whatever the f*ck this is, it's 100% NOT acne. Personally, I don't think everyone on here is suffering from the same condition. I think some people on here may be dealing with fungal acne, some demodex, others perhaps Morgellon's/nano-tech infestation, and others something totally different. I, specifically, had what the first post of this thread shows - skin changes that initially resemble acne, but there are these grains of "rice" embedded that refuse to allow the "lesion" to heal. These are not regular pimples or acne!
I didn't argue with the dermatologist or try to convince her that it's not acne. I sat there, sobbed a little, and said "fuck it, guess I'm trying isotretinoin now". I've already tried basically everything I could think of: antibiotics, antifungals, antivirals, over-the-counter everything, almost everything listed on this thread. Literally nothing worked to prevent new lesions. I've been on isotretinoin for about 2 months now and I FINALLY HAVE MY SKIN BACK. Ever since I started taking these pills I have NEVER had a new lesion (quite frankly, I've never had better skin)! Do I think this is acne? Absolutely not, BUT I think the mechanism of action of isotretinoin works on whatever this is. First of all, as you've also mentioned, this condition we have likes moisture. Isotretinoin dries your skin out extremely. There are some downsides to the medication. I had to lower my dose due to side effects like joint pain, mild flu-like symptoms, fatigue, etc. However, on the lower dose I'm totally fine & more importantly, I'm not dealing with skin issues anymore! If any of you reading have what is shown in the first post of this thread, I strongly encourage considering just trying isotretinoin. I wish I tried this sooner, it would've saved me a lot of emotional torture & sleeveless turtlenecks in the summer. Happy to answer any questions. Hope you all are able to treat this nightmare condition. Literal hell & I hope I never have to deal with it again. Wish you all the best xx
@25years Just wanted to update you & everyone else who still reads on here. As I've mentioned before, my initial "lesions" were always on my neck. After time they gradually started appearing more along my jaw, and the final straw was when I had one pop up on my face. I got to the point where whatever I was using was clearing the older lesions up, but now I was constantly getting new ones. The never-ending cycle. I finally broke down & went to the dermatologist yet AGAIN. I went to a new dermatologist because all the prior ones were useless. I broke down crying in the office because...well anyone who is dealing with this knows why. I'm pretty sure she just thought I was emotional, but the difference was, she actually offered something the other dermatologists didn't. She proposed I go on isotretinoin (more commonly known as Accutane).
Obviously, she thought I'm simply suffering from acne. And while I've had acne before, whatever the f*ck this is, it's 100% NOT acne. Personally, I don't think everyone on here is suffering from the same condition. I think some people on here may be dealing with fungal acne, some demodex, others perhaps Morgellon's/nano-tech infestation, and others something totally different. I, specifically, had what the first post of this thread shows - skin changes that initially resemble acne, but there are these grains of "rice" embedded that refuse to allow the "lesion" to heal. These are not regular pimples or acne!
I didn't argue with the dermatologist or try to convince her that it's not acne. I sat there, sobbed a little, and said "fuck it, guess I'm trying isotretinoin now". I've already tried basically everything I could think of: antibiotics, antifungals, antivirals, over-the-counter everything, almost everything listed on this thread. Literally nothing worked to prevent new lesions. I've been on isotretinoin for about 2 months now and I FINALLY HAVE MY SKIN BACK. Ever since I started taking these pills I have NEVER had a new lesion (quite frankly, I've never had better skin)! Do I think this is acne? Absolutely not, BUT I think the mechanism of action of isotretinoin works on whatever this is. First of all, as you've also mentioned, this condition we have likes moisture. Isotretinoin dries your skin out extremely. There are some downsides to the medication. I had to lower my dose due to side effects like joint pain, mild flu-like symptoms, fatigue, etc. However, on the lower dose I'm totally fine & more importantly, I'm not dealing with skin issues anymore! If any of you reading have what is shown in the first post of this thread, I strongly encourage considering just trying isotretinoin. I wish I tried this sooner, it would've saved me a lot of emotional torture & sleeveless turtlenecks in the summer. Happy to answer any questions. Hope you all are able to treat this nightmare condition. Literal hell & I hope I never have to deal with it again. Wish you all the best xx
I'm glad to hear this!!!! I go to another dermatologist on January 21st, I'm definitely going to ask for this meds! I will literally take anything!
@skinshit Im sooo very happy to hear this for you!!! Please keep us posted on how it goes even after you are finished with your accutane course too if possible (to see if the lesions stay away). This is my next step as well if I cant find anything soon, so would definitely appreciate updates on your progress if you are able! Thank you so much in advance!
@finerfeedback I will definitely post here again if it comes back! My accutane course is going to be at least 12 months, maybe even up to 18 months, but as of now, all my old lesions are gone and I haven't had new ones since I started (I think I started somewhere at the end of September ?? however I refrained from saying anything until I saw some results). I genuinely thought I was going to write-off accutane as another "Tried it, didn't work", but so far so good. I definitely recommend just playing it off as acne & getting a script if any of you have maxed out any other options/ideas! Will definitely keep you posted if things go south!
@skinshit Thank you so much!!! Your updates will be much appreciated! You mentioned that you lowered your dose what dosage seems beneficial to keep the lesions away and yet avoid side effects??
So I think has cycles but right now I'm in I guess what would be called remission right my arm looks better than it has in four years I really don't understand why I think it has to do with the fluconazole that I was on but something else is happening to really weird it appears as if acne but it's not and they're everywhere
It's Herpes. HSV, I don't know if it is HSV1 or HSV2 yet - but I will find out. You need a skin biopsy/punch biopsy that specifically tests for HSV 1 and 2, if not also VZV (called Immunohistochemical Stain). They might be able to do a swab of your open lesions, there are HSV PCR tests for that, but a biopsy might be a better, more accurate result. Make sure they do it on a current or past infected area. Don't let them just do a general biopsy or a microscopic review of sample - it must be a Herpes specific stain or a Herpes specific PCR test.
Source: I have written on this site on and off for years. I have had for 10 years, but now I know I had it before that, 20 years at least. I have been to so many doctors - always pushing through their shame and blame, kept moving forward. I have a Natural Killer Cell Deficiency (NK Cells), which if you read research articles on Morgellons, you will see that this deficiency is very common among patients. NK Cells control Herpesviruses in the body, there are 8 Herpesviruses as of now. You can read articles on the function of NK Cells, see an Immunologist to get NK Cells tested - 2 separate tests: numbers and function. Don't let them just test numbers. Myself and my family have undergone genetic testing and it is still under review. Looking at genes that cause NK Cell Deficiencies. Henceforth my susceptibility to unique presentations of HSV1/2. You need oral Acyclovir at a minimum. Dosage is important, and you might get under-dosed if you have a NK Cell Deficiency that hasn't been diagnosed yet.
My Immunohistochemical stain of my skin (a biopsy from my face with no current ulcerations, but was a site of continuous trouble, had been ulcerated) came back positive for HSV 1/2. The test itself didn't differentiate btwn the two, but it can be differentiated through further testing.
If Doc's just do a blood tests for HSV 1 or 2, it really doesn't help you that much as so much of the population is positive for that. I have also had Thyroid issues, but I believe that is because I had untreated HSV for so very long.
Edit: If doc's say they don't see an active open ulcer with which to do a biopsy on - or anything along those lines, still request the testing on/near old sites that have scarred. If they still don't do it, find a doc that will.
@dar-wins Thank you for the info. Have you personally had success taking the acyclovir? Has it worked for you? I know there was one girl on this thread who had success with it, but several others did not. I wonder why it worked for one but not others. Seems there are multiple pathogens working here. I recently got a gut test showing that I have tons of protozoan parasites present despite having taken many, many antiparasitics, both natural and conventional. The protozoan parasites lend toward leishmaniasis. This stupid thing seems to encompass all and every type of infection what in the world is it?! I do suspect genetic tendencies have something to do with how one responds I bet this is present in many people but they have the right genetics to block it.
@skinshit Are you still going strong being sore-free with the accutane?? Would love an update if possible!
@finerfeedback If one has an immune deficiency, then the dosage is not only important, but also long term suppression. I am looking at potentially having to take it for the rest of my life. It looks like I will also be on something called SCIG for my immune system. All I can speak to is what has been been medically proven for me - HSV 1 / 2 in my dermis and not under an active ulcer. Acyclovir is working for me, oral and topical. Wishing you the best on your journey.
@dar-wins That is great to hear for you! Are you completely ulcer-free or is the acyclovir improving the situation but not full time remission yet?
@finerfeedback Hi, so long story, short: still on accutane & still no new lesions since starting it!
Longer version: in terms of dosage, there seem to be 2 schools of thought amongst dermatologists. Some dermatologists treat you until you reach a cumulative dose (usually around a year-18 months). Other dermatologists find that approach to be outdated & they may decide to stop treatment once your skin remains clear for a certain amount of time. People usually start taking ~30 mg per day for the first month, then that dose is doubled. The dose depends on your body weight. I started with 30 mg and it was ok, however when my dose was upped to 60 mg per day I could not handle it. I was waking up extremely tired, my joints hurt so much, and most importantly I was extremely anhedonic. Currently, I'm not taking the dose my derm recommends because I need to function. So, I'll take maybe one pill today and then take another pill in 2-3 days. It just depends on how I'm feeling. This past week I was trying to take at least 1 pill (30 mg) everyday, and today was absolutely brutal. I practically spent all day in bed because I don't have the ability to get out of bed mentally/emotionally. I'm in this phase of: my skin is ok, but I'm worried if I stop taking the pills I'll start having these lesions again. Overall, I don't regret starting despite these symptoms. Dealing with new lesions constantly was more brutal than this in my opinion. Happy to answer more questions if you decide to start as I've picked up some tips & tricks along the way to combat side-effects.
@skinshit Thank you so much for the update! Although Im very sorry to hear of your side effects. I took accutane back in college for regular acne and the side effects can certainly be brutal. Still I completely understand that not having the lesions is better than pretty much any side effect that may present itself they are the absolute worst thing ever. I am so happy to hear they are staying away for you! Might your doc consider a very very low intermittent dose to be taken almost forever? Is that even possible?
@skinshit Also just a side note: I have great empathy for you and your fear of the lesions returning. Thats another thing thats so incredibly awful about this disease. Even if we can get it into remission, we have to basically live in fear of its return so we cant even enjoy the times when we dont have the sores. I was able to achieve remission this past summer for about 2 and a half to 3 months using Berberine, and then just when I had hope that maybe I was healed, it came back worse than ever and I have barely left my house in 3 and a half months. Its just so all unfair and horrible! I was waiting to post about the positive impact of Berberine until I knew if it was a permanent thing. Sure enough, it wasnt. This disease is straight up evil. I would think something as strong as accutane would have a much more lasting effect and I sincerely hope that from the bottom of my heart for you!
If anyone needs proof, please see attachment. I am not a troll, unlike some others.
I have suffered greatly. My only point in sharing is to help another.
Read this:
https://pmc.ncbi.nlm.nih.gov/articles/PMC5811176/
@finerfeedback Ah, if you have taken accutane in college then you know how it can be! I'd definitely recommend trying it again - I feel like the drying out component is what ultimately stops these these from erupting. I have also tried Berberine! I took it for months simultaneously with capsules of wormwood, black walnut, clove, olive leaf & others I'm forgetting. I bought these herbs sometimes whole & sometimes ground & then made my own capsules to know I was ingesting the real thing without any fillers! Nothing worked!
PS. I have also tried acyclovir after reading the post of a girl on here whom it helped. I had zero results using that, unfortunately.
@skinshit We sound very similar Ive taken many of those things you listed as well. Along with about 8 million other things as Im sure have you! Im getting desperate so I think accutane may be my next option. I would take it forever if it worked, I wonder if it could be micro dosed long term.
@finerfeedback it can be microdosed! this is what many celebrities do!
Omg! Skinshit is someone to question. Microdosed? "It's what celebrities do". Oh, my goodness!! What is happening on this site where medicine takes a back road to very questionable words. Use judgement!
Why would you insult someone and then ask them for help? Doesnt make much sense to me. The comment about celebrities microdosing accutane was very valid to prove that it can be done and is often done. That is what I was asking. We are all suffering with this terrible disease so I would encourage everyone to be kind and helpful instead of rude.
@finerfeedback Like I said, use judgment. Microdosing accutane is not backed up by science. Certainly not for people who struggle at this level of suffering. Using "celebrities" as a source is one of the worst recommendations I have ever heard. But, my best to you - do it. It won't hurt....but it certainly won't help.
This is the invisible itch, when you feel a sting- it's bitting you. They are like little hairs and come in all sizes, colors so far have been mostly brown, but also white, red and green! I just started taking wormwood and these are coming out of like crazy! You would never see it on you! You may find little pieces of hair on you that's making you itch, that's not a regular hair
@25years the photos don't seem to be showing for me at least!
Hi, I first found this forum the first run in with these f@#$&rs (they deserve that) I learnt then that they react strongly to the wrong treatment and I tried all sorts and some really strong stuff and always made it worse, they in my experience changed forms and iv had all the different forms of this shown in pictures in this forum. So when they returned a few months ago I was careful not to erupt them. I got one onto of my foot where the crease is to leg, I wasn't even going crazy but picking slightly and felt a pain that I can't explain, and I know how much the plugs hurt even just lightly touching them but this was pain that shot though to the bone then my foot blow right up and stayed like that for about 2 weeks, I hit my shin on a step ladder no big deal but it ended up infected and the skin around it was peeling in circles looking a little like ringworm (fungal infection) yes I believe "Aussie scientist" was right and is right even if it doesn't work for everyone all the time. Fungas is hard to kill in general. Anyway that foot from shin down also blown right up luckily not at the same time as right foot. I should mention I have about 10 to 15 spots right now and I recon there is maybe 3-4 different types most very small but if I started picking could all go south. On my left thigh I have 3 5cent to 10cent peice size ones that are the closest looking to my first encounter with white plugs but bid different, these are shaped like a 50cent peice and had few small plugs at first but seem to have a plug with maybe a black hair in them and when I tried to get one I felt pain like my foot pain, and it's so bad I hardly dare touch it, I mean so bad it's un explainable, one of the 3 on my leg is different again and is like a different shape and has like harder texture and also I get real fine hair growing in strange directions sometimes, My right thigh has few that are the strange shape with some having the harder texture under the skin. IV been using the creams that Aussie scientist recommend and they have helped but these are really hard to stop and some that iv pick a bit have doubled in size within about 12hrs after picking and they don't seem to have the one plug that normally when removed would heal but more like a tiny hair that stings and so far like the rest of my spots seems impossible to remove even seems to move somehow and some that have a ring around (resembling ringworm) only unlike ringworm they look like a bad plug site inside the ring. When I have removed the ring with twizers, within about 10 hours while iv slept the ring has been redone and is stronger and deeper. B-My original run in with the plugs scared me, like anyone that has experienced them understands, but this time is a whole new level especially knowing this thread has been going for so long and no solid answer or cure. And seeing how it has changed for me and seems to be worse,
I'm happy that I found this Forum just like anyone that is going through this whatever you call it problem but was bit worried that after 30 pages and years of time that there was no real %100 cure or solution to this and even more bothered that Aussie scientist at left the discussion. The Aussie scientist had mentioned that there was more serious ways of dealing with these things, but with no way to get in contact with her/him I was hoping if there is anyone here that was told what to do with really bad cases they could pass that on to me.
Also I have to say, that as good as this forum is for me and everyone going through this s@$t, I believe that up to about page 2 or 3 this was a genuine discussion but then I can see the agents started getting involved (I don't care if you think that's crazy) it's just the way it is, they are here to misdirect people, you don't think it's strange that the medical world doesn't acknowledge this and samples of plugs come back just negative, this is some bullshit. They don't won't us to understand how things work and fungal is a big part it. So they are probably as much as maybe a quarter of the comments in here, it's disappointing but iv come to know and expect it, it's the same in all platforms like YouTube where anything involving any well guarded truth you will find misdirection. because people are really easily influenced by the comments sections.
I had to let that out but, seriously though I'm not as hostile as that probably sounds and would welcome any one that contacts me about this topic and please do.
I have to admit I have not read every page I just haven't had enough time as I'm sure time is going faster these days, so hope I haven't missed some good remedys. Thanks