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@25years It's going to take years to prove. I am having hard core genetic testing done well beyond a genome and exome. My guess is that the Thyroid is involved in metabolic pathways. Insulin is involved in Hypothalamus stimulation, which controls the Thyroid. Deficient nutrient signaling can result in many metabolic issues, including the Thyroid and skin. I am sure it goes way deeper than that. I don't believe it's the Thyroid that impacts the skin, but the Insulin dysregulation. That's why people with Diabetes develop skin ulcers that are slow healing. This would be a new form of Diabetes, potentially classified under MODY. Research MODY.
@25years It's going to take years to prove. I am having hard core genetic testing done well beyond a genome and exome. My guess is that the Thyroid is involved in metabolic pathways. Insulin is involved in Hypothalamus stimulation, which controls the Thyroid. Deficient nutrient signaling can result in many metabolic issues, including the Thyroid and skin. I am sure it goes way deeper than that. I don't believe it's the Thyroid that impacts the skin, but the Insulin dysregulation. That's why people with Diabetes develop skin ulcers that are slow healing. This would be a new form of Diabetes, potentially classified under MODY. Research MODY.
- This is interesting because if I dont eat I get fainting and hot, I always thought it was because my thyroid. Im negative for diabetes. I do get light headed more then the average person
I have created this song list over the last very painful 11 years. I know not everyone connects with music, and it's a symbolic message of what I have gone through. Maybe one person out there who reads, but never responds can connect and understand.
https://open.spotify.com/playlist/2cUYP2nYnAd6t0HnpfJN1G?si=20e578a425eb431c
One thing I know for sure, anyone that shames you - run far away.
@dar-wins Ok that is interesting thank you for the info. I have quit sugar completely in the pastincluding not even eating fruit. I believe I did it for about 4 months but did not see any improvement at all. Its difficult to continue something when you arent seeing any results. I eat low-glycemic now but I dont completely avoid sugar such as local raw honey, maple syrup, and fruit. Maybe it was the combo that worked for you. It seems different things work for different people. I dont understand why I saw zero improvement quitting sugar or taking valaciclovir. Im glad that you have found relief though this disease is absolutely horrific.
I have found my people! Finally I am so fed up with doctors its not even funny everything Ive read above is EXACTLY what I have experienced gone through since I was 17 years old. I am now 44!!! Reading this forum has helped me realize I am not alone!!! Obviously there is a problem and THE DOCTORS need to earn their money not just collect a paycheck I am so sick of looking like a meth addict.. because I cant get proper treatment! This is what I pulled out tonight.., I found you guys after asking google pics what it was! These lesions last a year or longer make craters harden over then more critters resurface Im over it!
I think it is Histamine!
I have a new phone and miss all my photos. The picture is of one of my ulcers healing.
The plugs are inflamed follicles and hair bulbs.
The cause is an overreaction from the immune system.
I also had no help from dermatologist in my country.
I got a diagnoses of "pyoderma gangrenosum" while on my travels, but the dermatologist in my home country would not accept the results despite even having laboratory tests.
I had large necrosing ulcers because of these "plugs". The disease is characterized by a high neutrophils (type of white blood cell) infiltration. But i could not find the cause without a doctor to help me. As the disease can have many causes.
I am on the Autistic spectrum and hypersensitive. A rough cotton T-shirt will make my skin burn.
I had this a lot worse when stressed.
But the answer was there and simple. Histamine.
This may not be the cause of all your cases, but it is in mine.
Finally free from these after 6 years of intense pain.
I hope this information is useful for at least some of you?
I would love if you try antihistamines that you share if they help you to.
Also the plugs are your body trying to heal and are definitely not parasites.
Hi . So would a Histamines pill help this situation? I have a horrible reaction to eating RAW vegetables and salad I cannot digest these foods Ive always wondered if these lesions were connected to my gut issues I read today actually about an AOD SUPPLEMENT that helps issues with histamine any further information would be greatly appreciated.
@25years Technically, I have normal A1C and fasting glucose. Those are the main Diabetes Diagnosis criteria. The problem lies in the criteria. I just have very quick spikes up and spikes down into hypoglycemia, I go hypo at night. That's why I suggested to get a CGM. Google Lingo. It's not cheap - 50 bucks for 2 weeks of readings - but if it changes your path - then invaluable. I have low insulin, low C-Peptide, low Pro-Insulin, low Leptin, high Pro-insulin/Insulin ratio - with normal A1C and normal fasting glucose. I have a high 2 hour OGTT (oral glucose tolerance test where you basically drink 2 soda's in 2 minutes).Mine is in Diabetes range. If you are able to get that test - which is hard with normal A1C and fasting Glucose - request that they also test not just glucose after 2 hours, but insulin/C-Peptide and Glucose, and do it at 30 minute intervals. Best of luck with that request.
@finerfeedback You and I are the same. It is horrific. Sometimes this website separates people, rather than bringing us together. Please know I hear you. Nothing is proven yet genetically - and it will take a long time, but I have already had full genome and exome. It seems like you understand that honey, fruit and maple syrup are sugars (and agave, and brown sugar, and white flour and potatoes, and it's in ketchup and BBQ, and almost every product, etc). I will say, the lesions I already had still took time to heal. I just didn't develop new ones. I still have one on my shoulder that is almost healed - it's closed up, just bumpy and peels. IDK, I'm just throwing it out there for all of the many people who have struggled and suffered since 1980, and I am sure way before that. Get some of these blood tests. Get a Continuous Glucose monitor (no prescription needed) - and let me know.
@gingerpoof I have also have had that around hairs/in follicles. I do believe it is excessive keratin - but do your own research. Diabetes, or rare MODY, can impact skin, hair, hair follicles, keratin production, dry skin, skin healing, skin ulcers, immune. I don't know - but neither does anyone else. I'm just trying to help. I will say that you are not wrong - immune system, histamine - they are both also involved. I have low Natural Killer Cells, High IL-1B (a cytokine), negative for mast cell - but broke out in full body hives after doing a glucose challenge...as if I am allergic to glucose.
@gingerpoof We are very similar. Thank so much for your input. The vegetable thing could be Thyroid, or Insulin, or just metabolic dysregulation. I actually have it as well. Thank you so much for letting me know I am not alone. If you get your Thyroid tested - make sure they do 5 blood tests (they will want to do 3 - don't let that happen). TSH, T3, T4, Free T3, Free T4.
Hi, From what youre describing, those "jelly-like plugs" might be keratin or sebum plugs, sometimes they form deep in pores and get trapped under layers of skin, almost like a cyst or dilated pore of Winer, a benign skin condition characterized by a solitary, enlarged pore, often resembling a large blackhead......The fact that theyre stretchy and wont squeeze out easily points to something deeper than regular acne. Have you tried warm compresses or salicylic acid patches to soften them before extraction? It might reduce the need for digging....Try hydrocolloid patches short term, see how it goes. Try this, a benzoyl peroxide wash (low %) could help prevent new plugs from forming by keeping pores clearer..W