Ongoing lack of treatment for odd skin parasite — Scope | Disability forum
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Ongoing lack of treatment for odd skin parasite

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harry01
harry01 Community member Posts: 217 Courageous
Had an unpleasant conversation with dermatologist. Completely unproductive. Very difficult as don't feel listened to at all.

Offering a treatment I have tried for a full year as instructed with no demonstrable effect. At this point I have a fair amount of experience given it's been well over 9 years.

Just trying to keep my stress down but it can feel like I am better off trying things myself when you get back this kind of response. 

I took blood tests they asked me to take. I knew that the would not gain any insight into the condition. It's very bad medicine. 

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  • Emma52
    Emma52 Community member Posts: 44 Courageous
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    Hi Harry, have you asked for a second opinion yet? I really hope so. Do you have a name for the skin parasite? It rather sounds like you are being fobbed off. What's the name of the treatment they have prescribed for you. If you let me know I shall try to find out if it's a generic one medicine treats all type. 
  • harry01
    harry01 Community member Posts: 217 Courageous
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    Hi @Emma52, thanks for responding. This is my 6th dermatologist and third hospital. 

    They don't know what it is. I've been prescribed anti fungal creams and shampoos, salicylic acid at low concentration (a treatment plan that has some logic) and an anti inflammatory. 

    An antimicrobial cream that I have use for a year already. Just offered anti psychotics which they talked about affecting nerve endings, which is completely mad as there is nothing wrong with my nerve endings. I described the sensation of the thing on the skin and that it's greasy and has an odour. It clings to the skin. I can tug at it on the skin surface. 










  • harry01
    harry01 Community member Posts: 217 Courageous
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    All I know is this 'thing' came in a jar that they sold me on Amazon's marketplace. It was meant to be vaseline and any site that I put a lot of it on my skin it sort of clung to. It is very well camouflaged but I can point to it distinctly in the areas it is on. 

    I've also asked if they could take a sample of it as this would be useful to establish what it is as at this point their rationale for a treatment plan is irrational. 


  • Emma52
    Emma52 Community member Posts: 44 Courageous
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    Sounds like they were looking at it being peripheral neuropathy, but as you say it doesn't feel like pins and needles or like part of your flesh is in an ants nest so guess they may have they line of thought wrong. Have you seen the top consultant there yet or has it been juniors? If the stuff you got from Amazon isn't getting rid of it or easing any symptoms - don't use it! Also try to make a diary of what it is, when and where it occurs for your next visit to the dermatologists. At the moment they only have what you can show them on the day of the visit. Try photo's of your skin and remember to date and time everything. This can also come in handy if you have to take it further to a complaints department or solicitor.

  • harry01
    harry01 Community member Posts: 217 Courageous
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    Hi thanks @Emma52 . I haven't used the thing that went on my skin for 9 years. My mum threw it out else I would take this to them to analyse. 

    I spoke to a clinician on the phone as well as the one I saw. I don't know what his position is. 

    Sorry, to clarify. The thing I bought from Amazon was what started the problem. It had an organism/thing in it. It was yellow, slimy and sticky. 

    I wasnt aware it was from the marketplace and so went against my instincts to put it on the skin. All of this was 9 years ago. Well, over 9 years in January 2015. 

    I can take pictures. The symptoms have remained exactly the same. It's attached to my skin like a barnacle and forma a biological barrier to the skin. 

  • Emma52
    Emma52 Community member Posts: 44 Courageous
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    If it's causing you discomfort perhaps you could discuss with them if it's possible to have it removed.  I really do wish you all the very best with resolving this as it sounds like it's really getting you down. Please let me know if you have any luck with your next appointment. All the very best to you and your Mum.
  • Rosie_Scope
    Rosie_Scope Posts: 2,240 Scope online community team
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    Hi @harry01, sorry to hear you're still having trouble with this. As Emma says, perhaps your doctors might be able to look into removing it for you. Doesn't sound like much fun at all!
    Rosie (she/her)

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  • harry01
    harry01 Community member Posts: 217 Courageous
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    This has been the plan. They haven't seem to accept my experience. Choosing instead to think I am mad. 
  • harry01
    harry01 Community member Posts: 217 Courageous
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  • Albus_Scope
    Albus_Scope Posts: 4,214 Scope online community team
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    Hey @harry01, sorry to hear this is still dragging on for you.  Would it be possible to get a photo of the possible parasite?  Just thinking it may jog someone's memory. 
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • harry01
    harry01 Community member Posts: 217 Courageous
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    @Albus_Scope it's on a sensitive body part. Otherwise I would. It's well camouflaged on the skin but it is yellow on the affected skin, very greasy and even sticks to things. 

    The issue I have is doctors and dermatologists seem to think that if the seller sold me very off vaseline it couldnt cause this problem. I wondered if it related to a whole soup of different microorganisms and bacteria in this jar.

    I know that it relates to biological organisms and my understanding of the word parasite means and organism that uses a nother host organism. 

    I have done the very best I can to explain what happened to doctors. I was specific. I applied a great load of this thing to a sensitive area of my skin. It 'infected' the area (not blood infection. The doctors had issues with my language of infection but here something invaded the skins microbiome and the word seemed appropriate. I don't know what other language to use) and has been there non stop since 2015.

    Yes, it very much surprised me that it was still on my skin after a few months. Never experienced anything like that and when doctors said 'nothing' was there it caused me huge psychological distress. 

    At the very least it seems like a case they are not experienced with. The last doctor I saw at least said he saw what I saw. I haven't even had this from a dermatologist yet. Just question my account and insult my intelligence. Tell me what normal skin should look like. It's completely mad. 
  • harry01
    harry01 Community member Posts: 217 Courageous
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    So I was hoping if someone could narrow down what is possible. My understanding is that it is bacteria that cause the odour. So could it be a stew of microorganisms, or is it one thing? My feeling is that they might have to consult other experts to get to the bottom of this. And of course I have no idea by what mechanism it is staying on the skin. 
  • Albus_Scope
    Albus_Scope Posts: 4,214 Scope online community team
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    Vasaline has a very very long shelf life and will have needed to have been left open in terrible conditions for anything to be able to grow in it, as it's mostly inert and doesn't contain any water, so bacterial growth would be all but impossible, though not totally impossible.
     Going for a process of elimination approach, parasites would tend to stay in one place, but would ultimately reproduce and spread from that one area, or die off. So something being in that one specific place for so many years is very new to my limited parasitology knowledge.

    So it's like a barnacle, feels greasy and smells a bit? 

    (we of course can't give any medical prognosis here I'm afraid.)
    Albus (he/him)

    Online Community Coordinator @ Scope

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    Neurodivergent.
  • harry01
    harry01 Community member Posts: 217 Courageous
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    Yes, I agree with this. And that is what the chemist said. It would need moisture to harbour bacteria. But it's definitely a living thing, though not like a mite. 

    Barnacle is my description as the only thing I know in nature that clings to things and is hard to remove. It uses a biological glue?  But it was able to stay here in spite of the skin shedding itself and it is clinging to something organic. 




  • harry01
    harry01 Community member Posts: 217 Courageous
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    I appreciate this discussion. Naturally I would like them to engage with this. I am only trying to get it off. 
  • Albus_Scope
    Albus_Scope Posts: 4,214 Scope online community team
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    Totally understandable @harry01 I understand how frustrating it must all be.  I've found doctors like to do things by the book, so prefer to go for simple solutions first, before going on to the more in depth assessments.  I'd have thought a skin swab at the very least would've happened by now though?

      If it's a living thing, it's very old for something so small, that's what's flummoxing me about all of this! 
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • harry01
    harry01 Community member Posts: 217 Courageous
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    @Albus_Scope ha it bamboozled me too. My initial thoughts was: this will come off by itself. The months passed and there was no change at all. Yes, it's very curious indeed. 

    They actually did do a skin swab. That was when they said it wasn't fungal.


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