Ongoing lack of treatment for odd skin parasite

harry01

I just feel like giving up. I am fed up of this burning sensation in my mouth and dehydration effect and this weird yellow slime.

I am fed up with all of them. They don't have an excuse. Anyone can not know something. They decide to say they know when they don't and caused me great psychological distress in the process.

They talk to me like I am an idiot and use daft assumptions to inform them. I have no words left.

harry01

What gets me is that they do it with certainty. How can you be sure in being wrong. Humans are very odd.

harry01

I feel like giving up on all of this. I've had enough. I've really had enough and I am concluding that they are stupid.

I have told them over and over and over. Additionally I am getting a reaction in my mouth from toothpaste and it seems to dehydrated me and gives me a pain in the side.

I give up. They don't listen to a word I say. They're not good at problem solving. They're hopeless.

I just wish I never injured my arm or bought this stuff online. My life over the last 9 years would be very different.

That said, I am glad this happened. It exposed me to just how bad they can be.

If they can say something with so much certainty and be so very wrong, then it doesn't say very much good about them. I've tried very hard to get help and I am fed up of them.

harry01

Can someone add to this? I really don't understand what is wrong with them? The whole situation is completely bizarre.

You have this experience and it makes you question the entire wisdom of the service. It makes you question the fundamental basis by which they diagnose anything. Are they even doing science?

It is such an oversight. They must regularly do this to people. It's not uncommon. At least It's opened my eyes to just how bad they can be. Unwilling to hold their hands up and even admit error. What sort of service is that?!

It's not the enlightenment.

Adrian_Scope

It's no wonder you're feeling so frustrated @harry01.

Have you thought about making a complaint or contacting PALS?

• Making a Complaint: If you feel like you're not being taken seriously, you can make a formal complaint to the NHS. They have a process for this, which you can check out.

• Patient Advice and Liaison Service (PALS): PALS can offer confidential advice, support, and help resolve any concerns you have about your NHS care. You can look online to find your local PALS office.

harry01

hi@Adrian_Scope

harry01

I complained to pals and the hospitals and didn't receive a satisfactory response. I still would really like to just get this solved.

The recent report from the hospital is completely daft based off the actual symptoms. It's insufferable that they can never take what you say at face value.

There is never any sign that they're learning...

harry01

It just all makes me very depressed. I get very very depressed and it has gone on for a stupid amount of time. It's a collection of organisms that are able to inhabit the skin biome. You would think that someone was interested in the mechanism of action.

There is a lot to learn. Why does it feel like they've decided that learning stops once they get their medical degree.

harry01

Anyone there? I just try and attack this thing with my nails. What else is there to try. I just wish I was back in 2014.

Rosie_Scope

Hi @harry01, sorry to hear you're still struggling with this. It can be tough when you don't feel like you're being listened to by medical professionals. Please don't attack it with your nails, though!

Have you found anything that helps you soothe it at all? Or is there anything distracting that might take your mind off it for a little while?

harry01

Hi Rosie. It's not really a question of soothing it. The skin isn't irritated.

ChatGPT describes it as a 'biofilm'. It describes certain ingredients in the shampoo I mentioned that might disrupt it.

I just used a lush shampoo the other day that has some effect. I also bought an exfoliant with salicylic acid.

The logic makes sense to disrupt this thing and it's described as a 'glue' of microorganisms.

I have told my surgery but the dermatologists are 6 months away. So I am going to keep trying these shampoos/exfoliants and discuss with a private doctor or dermatologist. There must be a medic who can engage with this.

Thank you for listening to me.

harry01

Hi @Rosie_Scope

Chat GPT has said this: ChatGPT

HiChatGPT

Hello! How can I assist you today?

I am working at disrupting this persistent biofilm on my skin. The recent shampoo from lush seemed to have some effect albeit not quite strong enough to break down the barrier fully ChatGPT

Dealing with persistent biofilm on the skin can be challenging, as biofilms are resilient and protect the underlying bacteria. The shampoo you mentioned from Lush might have had some effect, possibly due to its ingredients that target bacteria or break down some components of the biofilm, but it sounds like it's not enough to completely disrupt it.

Here are a few strategies that might help:

1. Look for Biofilm-Disrupting Ingredients:
   • Salicylic Acid: Commonly found in acne treatments, it helps exfoliate the skin and can penetrate biofilms.
   • Benzoyl Peroxide: Effective against bacteria like P. acnes and might help break down biofilms.
   • Tea Tree Oil: Has antimicrobial properties and can disrupt biofilms, but it should be diluted properly to avoid skin irritation.
   • Enzymatic Cleaners: Some cleansers contain enzymes that can break down the proteins in biofilms, making them easier to remove.
2. Mechanical Exfoliation:
   • Regular, gentle exfoliation can help remove the top layers of skin and biofilm. However, be careful not to irritate the skin, which can worsen the condition.
3. Topical Antimicrobials:
   • Consider using products with ingredients like chlorhexidine or silver, which are known to have biofilm-disrupting properties.
4. Combination Therapy:
   • Sometimes, combining multiple treatments—such as a biofilm-disrupting cleanser followed by an antimicrobial—can be more effective.
5. Consult a Dermatologist:
   • If the biofilm is persistent, it might be worth consulting with a dermatologist. They can prescribe stronger treatments or perform in-office procedures like chemical peels or laser therapy to target the biofilm more effectively.
6. Diet and Lifestyle:
   • Sometimes, underlying issues like diet, stress, or other health conditions can contribute to persistent skin issues. Ensuring a balanced diet and managing stress can support skin health.

If the Lush shampoo has shown some promise, you might consider pairing it with one of these other strategies to see if it enhances the effect.

Please describe to me again how this biofilm works? ChatGPT

A biofilm is a complex community of microorganisms, such as bacteria, that adhere to a surface and produce a protective matrix. This matrix is primarily composed of extracellular polymeric substances (EPS), which include proteins, polysaccharides, lipids, and DNA. Here’s how a biofilm typically forms and functions:

1. Initial Attachment:

• Microbial Adherence: Bacteria or other microorganisms attach to a surface, like the skin. Initially, this attachment is often weak and reversible, but over time, the microbes secrete substances that help them adhere more firmly.

2. Biofilm Maturation:

• EPS Production: Once attached, these microorganisms begin producing EPS, a sticky, glue-like substance that surrounds and protects the cells. This matrix not only holds the community together but also anchors it more securely to the surface.
• Microbial Growth: Within this matrix, the bacteria multiply, forming a structured community. The biofilm can contain different types of bacteria, which may communicate and cooperate with each other.

3. Protection and Resistance:

• Barrier Function: The EPS matrix acts as a barrier, protecting the microorganisms from external threats like the immune system, antibiotics, or topical treatments. It can also slow the penetration of disinfectants or antimicrobial agents, making it harder to treat infections.
• Nutrient Capture: The biofilm captures and retains nutrients, supporting the growth and survival of the microbial community. The close proximity of bacteria within the biofilm allows them to share nutrients and genetic material, including genes that confer resistance to antibiotics.

4. Persistence:

• Chronicity: Because of the protection provided by the EPS matrix, biofilms are notoriously difficult to eradicate. They can persist on surfaces, like the skin, and are often associated with chronic infections or conditions.
• Dispersal: Some cells within the biofilm can detach and spread, leading to the formation of new biofilms elsewhere on the skin or other surfaces.

5. Challenges in Treatment:

• Antibiotic Resistance: The biofilm’s matrix can impede the effectiveness of antibiotics and other antimicrobial treatments. Even if the outer layers of the biofilm are killed, the inner layers may survive and continue to thrive.
• Skin Conditions: On the skin, biofilms can contribute to conditions like acne, dermatitis, or chronic wounds, where conventional treatments might fail due to the biofilm’s resilience.

In essence, a biofilm acts like a fortress for bacteria, providing them with protection and sustenance while making it difficult for treatments to penetrate and eliminate the underlying microbes. This is why disrupting the biofilm is a crucial step in effectively treating conditions where biofilms are involved.

What I remember is I put a lot of this stuff on the skin and this stuff sort of formed this very persistent yellow barrier. This is consistent with a persistent biofilm? ChatGPT

Yes, the yellow barrier you described could be consistent with a persistent biofilm, especially if it was difficult to remove and resistant to treatments.

How This Could Relate to a Biofilm:

1. Color and Appearance:
   • The yellow color you observed might be due to the presence of certain bacteria or substances produced by them. Some bacterial biofilms, especially those involving Staphylococcus aureus or Pseudomonas aeruginosa, can produce pigments that give the biofilm a yellowish hue.
2. Persistence:
   • Biofilms are known for their durability and resistance to removal. If the barrier was difficult to wash off or required multiple attempts to remove, it aligns with how biofilms behave. The extracellular polymeric substances (EPS) that make up the biofilm matrix are sticky and tenacious, which helps the biofilm adhere strongly to surfaces, including skin.
3. Formation of a Barrier:
   • The "barrier" you mentioned is characteristic of a biofilm. Once a biofilm forms, it can act as a physical and chemical shield, protecting the bacteria underneath from environmental challenges, including skin cleansers, antimicrobial agents, and the body's immune response.
4. Difficulty in Treatment:
   • If typical treatments or cleansers aren’t effective at breaking down this barrier, it's another indication that you're dealing with a biofilm. Biofilms require specific strategies to disrupt the matrix and effectively reach and eliminate the bacteria within.

Rachel_Scope

Hi @harry01. It sounds like you've had a tough journey. I'm glad you're getting some relief with the shampoo and exfoliant. I hope the dermatologist is able to help you.

harry01

None of these things are working. They have placed the onus on me to solve this problem.

Rosie_Scope

That sounds really difficult @harry01. Have you found anything helpful from your own research?

harry01

I use chatGPT in sheer desperation and I have been studying A level biology and the sciences. I've written to university departments because I felt it might be off interest to them, given how whatever it is evades the skin's shedding mechanism but it doesn't cause a reaction. In some ways the lack of a reaction works against me. Haha

But it's mad. All I have done is report what happened. Even the AI bot thinks my account is compelling. And it's just a load of algorithms. But at least it's better at being objective. They just double down on their 'comprehensive' assessments. I think it's appalling that they can use language like this and then describe my correct observations as 'fixed beliefs'.

They practically want you to submit to them. As if the complexity of real life is too much for them. But not every condition falls into neat categories. That is a weakness within the healthcare system and it won't disappear as a problem. They can carry on writing off cases as being psychological with no evidence whatsoever.

That's not the scientific method. It's plain ego. Pure and simple. I only have one doctor who supported my observations therefore he has 'fixed beliefs' as well. I know that I could prove it's there I'm effect. There would be ways of doing this.

Rosie_Scope

It sounds like you've really been through it all with this problem, I'm sorry you haven't found the answers yet.

What happened with that one doctor who supported you? Do you still see him at all?

harry01

@rosie_scope he didn't go against the rest of the doctors and dermatologists. He agreed with my observations. It was the first account of someone agreeing to see the 'yellow substance' on my skin. He conceded that 'he had never come across it' but dermatologists have offered no treatment plan.

Well, the previous dermatologist wanted me to take antipsychotics to block my nerve endings which was completely mad believing the sensation to relate to some error in that sense and not the nerve endings merely reporting correctly.

I then saw a second dermatologist and he just simply said the skin was 'normal' and then in the report wrote that I had 'fixed beliefs'. The surgery just took the position from the 'specialist' but it's plainly obvious that this isn't a typical problem within dermatology.

They seem very ready to dismiss it as it doesn't present as an allergic reaction or a sign on the skin itself. What you have is an odd organism(s) (chatGPT describes it as a biofilm like substance) that is able to adhere to the skin in spite of its shedding mechanism.

This is what has baffled clinicians as they seem to think this is an impossibility. I have tried to be clear to them that my observations are not mistaken and they have been consistent for nearly ten years. I have even asked them how I can demonstrate it is there.

I have been flexible to what it could be but I know that it was what they sold me online. It has to be biological as anything else your skin sheds. I just need one interested academic or someone.

harry01

I don't really know what to do. The surgery had a go at me for complaining. I complained because the problem isn't psychological. It's completely mad that they'd do this to someone when they reach gaps in their knowledge.

It just feels like the entire system is working against you.

harry01

@Rosie_Scope what should my plan be?