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Related to the tiny white plugs discussion...

MemberMember
3
(@mindfullyhealing)

Posted : 12/01/2024 12:23 am

I have followed the forum & read through all the responses to the tiny white plug saga, as I have dealt with this issue since about 2019. I still have yet to figure mine out entirely, but I have managed it somewhat successfully for the past 2 years or so. I still have no exact diagnosis, but many ideas thrown around on these forums make sense as the causation & root of the issue. What instigated me to post about my experience finally was finding an article about how "ringworm has mutated through the years," & this discovery possibly makes sense in someone else's case out there. I have believed for a long time that mine had a relation to ringworm as I have dealt with ringworm infections many times, & specific characteristics of my sores resemble a "normal ringworm presentation." However, other aspects do not, so I always wondered if I had developed some chronic, mutated ringworm infection from never entirely eradicating it in the first place. I do know that, like many others have said, PICKING & using multiple products at once is not the answer (at least in my case) and that leaving them alone, working on my mental health, and keeping the things I use to treat them simple & slow to evaluate their effectiveness has been the best route for me personally. I am by no means trying to put anyone down who struggles with picking as a means of relief because trust me, I've been there, & some days I still struggle with not picking due to the pain of these weird ass sores, but keeping myself healthy, my stress down, & avoiding intense irritation have in the least helped with the healing aspect & the reoccurrence of them, not the prevalence of them because I still get them from time to time but not nearly as often or intensely as before.

I'm going to try to keep this organized and as simple to read as possible as it's a lot of information. However, my goal is to share my story, see if anyone else is still struggling with this skin condition, and if anyone has found a diagnosis, resolution, or better form of treatment to manage it. I'll also share the article I read (about the whole ringworm thing). I would love any response, discussion, feedback, or anything! The other forums seem pretty outdated with information regarding the "tiny white/stretchy plugs."


Back story (how mine started - pictures included):

  • So, in 2019, after a particular day of chopping up wood with my boyfriend near a densely wooded area, I came home and had a slight blister-looking rash on my forearm. It started very simply, so I summed it up to a bug bite and didn't overthink it...then it started to get more prominent over the next few days with more blistery spots. It then spread to my neck. I've had poison ivy and poison oak before, and while it resembled these rashes, it was different; the blisters had little splinter-looking things in them and wept constantly. It was the itchiest rash I've ever had. When I went to urgent care, they diagnosed it as poison oak and gave me steroids, creams, and antibiotics. While it helped heal the rash, it morphed into something I'd never experienced. The area under my neck filled with fluid, so much fluid that it felt like I was walking around with a turkey gobbler hanging from my neck. It slowly started to weep out from under my chin and my arm. Then it took forever to scab up. As it scabbed over, these little white plug-looking things started flaking out. As it healed, I started getting the sores with the plugs that take forever to heal. The whole healing of the rash took a solid month to 2 months until it was somewhat back to normal, but the sores persisted. I went back to my family doctor for these; he again put me on antibiotics and mupirocin ointment for what he said was impetigo. It didn't work. I showed him the rash I had been treated for, but he didn't seem to think it was related. Throughout the rash, I also had general flu-like symptoms, fatigue, weakness, muscle/joint pain and soreness, constant tiredness, brain fog, weight loss, etc. (which never subsided and worsened with stress, environment, etc.). I went back to my doctor to try something else, and this was when he told me that it was self-inflicted (which, yes, we all know that picking the plugs out eases the pain and at this point, I was doing that, but before any of this I had clear skin and never picked at any of my "simple pimples" that I used to get, but these things showed up on their own and are not the regular acne I used to have at all). So, I dove deep into researching the possibilities...and treatments. Some things worked, but many didn't. But what I believe it is to this day is fungal and related to my weakened immune system and whatever it is taking over my entire system. I think healing the body from the inside out is super important to figure out a lasting remission of this condition. I'm just struggling to find the proper treatment. I've had biopsies done, swabs done, Lyme testing, and blood tests, and nothing shows up. But I've read a lot about how certain infections or conditions can mask themselves or be undetectable as they're mutated, and the current tests aren't adequate for diagnosing.

As of today, the sores wax and wane. I don't know if the correlation is hormones, but I'll get anywhere from 1 to 5 spots that start out looking like the average pimple or more like a cystic acne bump. It will be raised and seem like it will come to a head, but it never really does, and it is sore as heck. It will chill there forever, no matter what I put on it: pimple patch or cream. It remains this hard, closed, painful lump that isn't pop-able but needs to be released to have anything happen with it. When popped, sometimes a little bit of stuff comes out, or a hard nodule-like seed pops out, and then the skin peels off, revealing all the freaking white plug things that are glued in there. If pulled, the sore bleeds like crazy, but the pain, tightness, and pressure in the sore are relieved. If too many are pulled or messed with, a sort of calcified plug ring forms around a center crater of plugs. If left alone, these things take at least a week to start to look like they may heal, but even then, they can become covered by a pseudo skin (maybe biofilm?) that is easily disturbed by the simplest touch or washing. It's such a miserable process. My entire face no longer has the same texture it used to years ago. It's like a thick coating of layers of whatever this is covering my old skin. My eyes/contacts feel gritty and dry like sand coats them. I have a weird white, flakey goop in the corners of my eyes when I wake up every morning (not just the typical crust of eye boogers). I have so many light vellus hairs all over my face, and whether I take a derma blade and shave them off, it seems like they're right back the next day or 2. This is gross, but my boogers are also always the same white consistency as my eye boogers (even when I'm sick and they should be green, they're white). I have spots on my tongue that feel like they have glass pieces and bleed when I brush them.

I apologize for the length of this post and the number of pictures. I'm hoping someone out there can relate to what I've gone through and am still going through, as this is such an isolating, depressing, and embarrassing condition to deal with.

https://www.sciencealert.com/cdc-first-us-cases-of-severe-drug-resistant-ringworm-identified <--(link to drug-resistant ringworm article)

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Ishayat, Ishayat and Ishayat reacted
MemberMember
31
(@dar-wins)

Posted : 12/08/2024 4:07 pm

Yep, you look like I did. 100%. 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.

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.

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MemberMember
3
(@mindfullyhealing)

Posted : 12/12/2024 10:27 pm

Thank you so much for your response! It definitely has flares the way herpes tends to present. Do you have any clue what actually causes it to present like this? Like so widespread & aggressively? Is it the result of the low NK cells? And is there anything you can do to boost your NK cell count or is that something that you'll just live with forever?

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MemberMember
20
(@snipzie)

Posted : 12/13/2024 1:54 pm

Just a suggestion re possibility/diagnosis of herpes...you can try L-Lysine 1000mg x3 per day. I recently had shingles (even though I had the Shingrix vaccines), and took it for the duration. It was very mild and short duration...but didn't help any aspect of my face issues . Worth a try tho.

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MemberMember
31
(@dar-wins)

Posted : 12/23/2024 8:17 pm

@mindfullyhealing NK Cells control all Herpesviruses in the body. There are 8 of them (VZV, CMV, HSV, etc). Technically, all of those are a risk. CMV would potentially be the most life threatening. They can also cause issues with Hepatitis and HPV - so make sure you have those vaccines, in addition to shingles vaccine.

There are supplements that I take, but I don't know if anything is proven to boost NK Cells. Natural Killer Cells/Immune function are actually a fairly recent discovery (2010 ish?). I take Zinc (I do have a zinc deficiency - a test I ordered on my own), Green tea, Resveratrol, and L-Lysine (for HSV) - plus Acyclovir oral and cream. I can't say those supplements are the best options for you. Maybe Zinc, but do take L-Lysine.

In terms of medication for immune system, there is IVIG and SCIG - but they are not cures, just intermediate help. There are medications for NK Cell Deficiency, and many promising ones still in the research phase. I am not on any of those yet, and I am a little hesitant of the current cytokine/interferon therapies, as they can causes HLH, which is very bad and will kill you. I am speaking with my team of doctors in January, so will get more info then.

On the positive side, it does seem to be limited to my dermis. Disseminated Herpes can cause organ failure, blindness, absolutely can kill you. If you do get the NK Cell testing done and/or the Immunohistochemical stain - please do let me know the results. This is very rare - according to medicine. I would love to find others. I can get you into a study out of a top university.

This post was modified 5 months ago by dar-wins
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MemberMember
31
(@dar-wins)

Posted : 12/23/2024 8:24 pm

@snipzie You had the shingrix vaccine and still got shingles? OMG. I held off on that vaccine for a long time as doctors weren't sure if my issue was being caused by VZV, but now that it's clear it's HSV2, I was going to get it. Did you get sick from the vaccine?

Yes, absolutely L-Lysine. I am taking 1000 mg a day. You think it should 3000 mg a day? How did you land on that amount? I am not saying you are incorrect, just a little weary of overdosing. Maybe that wouldn't even be an issue - I have no idea. Any insight is helpful.

 

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MemberMember
20
(@snipzie)

Posted : 12/24/2024 10:14 am

@dar-wins I did have a series of highly emotional events happen this past year, and I wasn't doing so well. It was on a small area of my butt. Stinging and burning once there, but no warnings. I was shocked but not surprised considering my mental state. I wasn't able to get the oral med for it, but used what I had access to. I have L-Lysine anyway, but didnt know what dosage was suggested for Shingles. For common HSV it's 1000mg x2 daily, for shingles it's 1000mg x3 daily.

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MemberMember
31
(@dar-wins)

Posted : 01/05/2025 8:58 pm

That is so wrong that you can't get help. Yes, mine exploded when I was going through discrimination/retaliation and a lawsuit against my former employer. I second that stress is an important part of it (that is Herpesvirus! Read up on that!) - but it doesn't help stress levels when doctors gaslight you.

Are you sure yours is Shingles? And doctors won't treat you?? Have you had a skin biopsy? I have been Dx'd with shingles before.

How can I help you to get help? You shouldn't have to suffer through a lack of treatment. You think it's shingles, but you are still not afforded medication?

Why do you think it's shingles vs HSV2? Can you post any testing?

 

This post was modified 4 months ago 3 times by dar-wins
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MemberMember
31
(@dar-wins)

Posted : 01/05/2025 9:15 pm

My skin biopsy results:

https://imgur.com/J8TH6XI

If you can show medical documentation, that really would help people.

 

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