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Hello,
I have been struggling with this exact same issue for 11 years, and having the same terrible experiences with dermatologists and doctors. In the past few months, I feel that I have finally made significant progress on treating this condition and want to share what I have learned. This is my personal experience and it may help some others. I am not suggesting it is the case for everyone.
This started in my late 30's, and at first I thought it was some kind of persistent adult acne. I had never really had any skin problems up until that point aside from an occasional hormonal blemish here and there.
All of the acne treatments I tried made it worse and I had sores that wouldn't heal for months with the white plugs etc.
Any doctors/derms I went to would tell me that I was causing it by picking at my face and they would give me antibiotics, spironalactone, tretinoin, etc. Those things seemed to either make it worse or just not work. And being constantly blamed for something I wasn't responsible for caused a lot of mental anguish. I won't deny that I picked at my face at times, because I would have painful spreading sores, with weird white plugs that wouldn't heal for months--but I knew I was not the cause of these lesions.
This went on for years. I would have repeated flare ups and would desperately try remedies for fungus, bacteria, etc. I literally tried everything. I even drank potassium iodide solution for a month-yuck. Sometimes there were small improvements, but no lasting change.
This past couple of years have been especially bad, and I thought that I had an autoimmune disease (it runs in my family and I had some other symptoms). I had to fight to see a rheumatologist, but I insisted and my doctor finally gave in. Fortunately, I got a good one who was very compassionate. She ordered all of the tests you can imagine. It turns out I did not have an autoimmune disease, but in that process, they gave me some tacrolimus ointment to use and it actually worked.
This condition, at least for me, turned out to be eczema. And the only reason I finally got diagnosed with it after a decade is that in addition to the weird sores, I also started getting patches that presented like typical eczema, and I also started getting it on my hands (it looks different on my hands). I work outside in Colorado, which is very dry and can be very harsh on the skin. These issues also started at a time when I was undergoing a lot of stress, so I think that contributed to the sudden development. After my diagnosis, I realized in retrospect how so many of the treatments that I was trying were actually drying out my skin even more and exacerbating the issue (tretinoin, benzoyl peroxide, etc)
I think that because the previous presentation was atypical, they just blamed me and threw some antibiotics at me instead of really investigating the cause. So, with the new developments, the derms couldn't dismiss me anymore. However, that didn't stop them from still treating me badly and acting like I was making it all up. Which was crazy because they finally acknowledged it was atopic dermatitus, but then were still really defensive about not treating me correctly for over a decade and giving me medications that made my condition worse. They still were managing to blame me somehow? This experience with dermatologists has been mind boggling. Are they all arrogant, unhelpful jerks? In my experience, yes. So many times they dismissed me outright and acted like I was a crazy person. They would spend like 2 minutes with me and wouldn't do any real exam or biopsy, etc. So, I feel for all of you also going through this. I know how frustrating & demoralizing it is to be treated like that.
Ok, now some advice about the lesions. I know that sometimes these white plugs get big and protrude through the skin, and can inhibit wound healing. They act like a splinter/foreign body in some cases. However, these are natural structures in your skin and you should be very judicious about the ones you pluck out. Your skin is having an inflammatory response and is behaving abnormally, but plucking all the white plugs out can cause greater inflammation and scarring. I know that some of them have to come out, but just be careful about it and don't get compulsive. When in doubt, leave them alone and put a hydrocolloid bandage on along with the tacrolimus ointment. Many times they will recede back into the matrix of your skin as the inflammation subsides.
Ok, that's my story. Again, I don't know if it will help anyone else, but I am so relieved to finally have a grip on this confounding condition. The tacrolimus helped me so much. I just wish they would've given it to me 11 years ago before I had all of these scars on my face. I know there's other meds for eczema like dupilumab, which may also help, but I haven't yet tried them.
Best wishes to everyone. I know how adversely this affects your quality of life, and the medical community is not any help.
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.
This sore looks like it's healing in this pic. Under the skin is where these hairs are coming out
I have literally been looking for this for 15 long awful years. I am absolutely bawling right now. My life is completely ruined. Im desperate. I have had several MRSA infections due to my open wounds and Im constantly getting parts of my clothing stuck in them and then get infected I can get a layer of skin or crust over it anyways if I placed a colloidal Band-Aid on it until its completely healed underneath, but then if it doesnt continue to heal where I see that little white dot underneath that crusty thin yellow layer, I know I have to get it out I have planned my entire last 15 years around these suffered through summer with pants I swim with leggings on people do not see my legs and I have it on my right arm really bad. I am desperate for this to go away. I dont fully even understand what the white plugs are I just want to know how to fix this and get my life back before I die of sepsis
Hey I have an idea its random and may already exist and who am I really I literally just found this for him, but Im so so validated right now I was beginning to question my own sanity. Can the leader of this forum or however, this got started or somebody who wants to take ownership of this set up, meets around the world where we can all just go and wear shorts and a tank top and talk to each other or go in a pool or sit in a hot tub And none of us will judge each other because we have all been through hell and back. Im still in it. I just want to wear shorts and not have to cover my legs in makeup to feel only halfway normal and have constant pain in my legs and swelling. I embarrassed my kids. I embarrassed myself. I get looks when I wear shorts most family is supportive but 100% of them think I just pick it myself I would love to bring my husband to this and show the validation that I am indeed not crazy how many of us are there on this who are talking about this? Does anybody know the demographics? How rare is this? If we have all been searching for 15 or 20 years!??!!
@iused2bepretty I feel ur pain me too been 15 different. Doctors and specialist none. can tell me what it is. I have same as all of u but. Mine all over. My body Ive. Had. It. For. 8 years there some picture .also got it starting go in my eyes my nose head. Back my ass my legs. Etc. all of use arnt alone
@iused2bepretty I feel ur pain me too been 15 different. Doctors and specialist none. can tell me what it is. I have same as all of u but. Mine all over. My body Ive. Had. It. For. 8 years there some picture .also got it starting go in my eyes my nose head. Back my ass my legs. Etc. all of use arnt alone
These scars look exactly like my scars, even how the plugs leave the "dots" inside the scar! I went from wounds for 20 plus years to now I have lines? No doctor will send anything to a lab! I just started seeing a GI doctor and yesterday had the tube down my throat with a camera, in a couple weeks they are doing a colonoscopy on me. It's something from the inside for sure because it's all over my body! We all definitely need to figure this out, not that it's ugly- but it is painful!!!!! I can't function normally it gets so bad
This is going to be left of center - and I can't say that you are the same. I have endured extensive testing over the last 10 years. I have posted prior regarding low Natural Killer Cells (Immune), Central Hypothyroidism with no Pituitary Adenoma (not controlled through Levothyroxine but Iodine, as I oddly had an Iodine deficiency), high IL-1B (cytokine) -and many others. I can list if it would help someone. I came here to say that I appear to have a yet to be recognized form of MODY. Don't know what MODY is - sounds on par. It's a rare form of Diabetes. It was so difficult to get to this point as my A1C and my fasting glucose are normal. I'm going to tell you the tests - and try to get a doc, any doc to order them:
-You will need fasting glucose and A1-C (which is a 3 month snap shop of your blood sugar levels (mine were both normal)
-Insulin (low, an easier test to get, but low insulin alone is not sufficient)
-Lipoprotein A (very high, easy test to get)
-C-Peptide (low)
-Proinsulin (low)
-Proinsulin/insulin Ratio (high)
-Free Fatty Acids (high - an easier test to get)
-Beta Hydroxybutyrate (high)
- 2 hour OGTT Test (high, This might be a more difficult test to get if you A1c and fasting glucose are normal. They make you drink basically 2 sodas in 2 minutes, and then test your glucose at the 2 hour mark. You want to track the test during the 2 hours yourself. Use a finger prick glucose monitor and take pictures.)
Get a Continuous Glucose Monitor (CGM) on Amazon, etc - Stelo is the brand that has the best range for showing blood sugar, but there are others - and they are not cheap. About $50 US dollars for a CGM that lasts 2 weeks. You also want a finger prick Glucose monitor (Amazon, etc) as it can track much higher and lower blood sugar levels. It's maybe $20 US dollars.
I would be super interested to hear what other's results are.
I am connected with very high university level docs. They are doing extensive genetic testing on myself and my family.
What is also interesting is that this article below mentions High fasting insulin (as well as many other things I relate to), when my fasting insulin is low:
Read this Article: https://www.tandfonline.com/doi/full/10.2147/CCID.S152343#d1e1787
"History of Morgellons disease: from delusion to definition"
"Central nervous system symptoms, cardiac symptoms, endocrine dysfunction (hyperparathyroidism, adrenocortical hypofunction, Hashimotos thyroiditis, hypercalcemia, elevated fasting insulin levels, and parathyroid adenomas), a high rate of autoimmune disease, and low core body temperature were commonly encountered in their cohort. Laboratory evidence of abnormalities that were commonly encountered included anemia, leukopenia, high monocyte count, low natural-killer cells, elevated serum calcium, elevated globulin levels, and elevated inflammatory markers (CRP, TNF, IFN). "
Thank you for all of that info. I was recently tested by an endocrinologist for most of what you mentioned. I also had an MRI focus on the pituitary, but inconclusive results since apparently there was an artifact with MRI pituitary image processing. I will now redo the MRI, but it will take about a year for that apparently. I see a lot of pictures on this forum that my skin condition and sores look similar to, but then I also see some images where I dont feel like its the same. I also only have this issue on my face and no where else. Any chance you could upload some more specifics of your case. Is this face only? Or also body? Could you upload photos by chance? All good if you would rather not, I totally understand.
@coldclimate Hi! Thanks for responding! No, the ulcers were all over my body including my face. I no longer have them - and I am not clear if it's from Valacyclovir or from cutting sugar out of my diet. It could be either, or both. I don't have a Pituitary issue, so a year is a long time to wait for another one. In my experience, doctors were very quick with regards to brain MRI's. I will tell you that my ulcers took a very time to heal, had raised outer edges, and had what looked like keratin deposits inside of them. What were the tests your Endo ordered and what were your results? All insulin/glucose related, or thyroid (you want 5 blood tests for the thyroid - 3 doesn't cut it). Diabetes (this is not your typical form of Type 1 or Type 2), does impact the skin. Wishing you hope and healing.
@dar-wins How long were you taking Valacyclovir until you saw results? I can say that I have done soooo much over the past 10 years to strengthen my immune system because I always suspected something was genetically wrong with me. I had taken l-lysine in the past in case this was viral and found no success. I recently took Valacyclovir daily for about 1.5 months, maybe 2, and saw zero improvement. As I was self-medicating, I didnt want to take it too long due to the side effects since I saw zero benefit. Did it take time for it to kick in? Maybe I didnt give it enough time to work?
@coldclimate Hi! Thanks for responding! No, the ulcers were all over my body including my face. I no longer have them - and I am not clear if it's from Valacyclovir or from cutting sugar out of my diet. It could be either, or both. I don't have a Pituitary issue, so a year is a long time to wait for another one. In my experience, doctors were very quick with regards to brain MRI's. I will tell you that my ulcers took a very time to heal, had raised outer edges, and had what looked like keratin deposits inside of them. What were the tests your Endo ordered and what were your results? All insulin/glucose related, or thyroid (you want 5 blood tests for the thyroid - 3 doesn't cut it). Diabetes (this is not your typical form of Type 1 or Type 2), does impact the skin. Wishing you hope and healing.
I have a hyper thyroid, I been taking meds for 20 years for it. How does the thyroid effect the skin this extreme? How long have you been taking the valacuclovir?
@finerfeedback Hi, I come with bad news. I've been taking the isotretinoin for close to a year at this point. Everything was going well - I had a moment of "best skin ever!". Well, about 3 weeks ago I was away for a week spending a lot of time outside being active in the sun & sweating. I woke up in the morning & I had 2 new spots in one area, and 1 more spot in another. You can see the "plugs" very clearly in the photo below. I just don't know what to say at the moment. I'm devastated.
@25years I posted an update above - looks like isotretinoin is not the answer. I'm back to square one. I'm revisiting posts again & saw some of your older ones. Did you see any improvement after the itraconazole? Secondly, I think it'd be wise to do some research on your biopsy results that showed arachnids! I don't know why your doctor decided to dismiss that. You are pulling things out of your skin that are reminiscent of spider webs. I will be reading up on this. Any updates on your end? I'm devastated.
skinshit...where on your body is this? And how do you tag someone as you did in your post above?
@skinshit Oh no, Im sooo sooo very sorry to hear this for you. I absolutely commiserate with you so much. Thank you for the update, I was getting very close to taking accutane, but couldnt get an appt until October ridiculously. But I do know how devastating it is to have this condition come back after experiencing some time in remission. Its pretty much the worst thing ever and can cause massive mental, emotional, and even physical breakdown. I personally think this might be an infection such as Lyme (which I have tested positive for) or agrobacterium which are bacteria that can literally cross over and insert themselves into your DNA. It would make sense why biopsies always come back negative for any pathogen, because the pathogen isnt in the skin but in your DNA causing your skin to malfunction and create things that it shouldnt create. I always describe it like the skin is confused and doesnt know how to heal correctly anymore. It is also similar seeing as it can be put into a dormant phase (cyst) when certain conditions allow it, and then re-emerge once it figures out how to beat whatever treatment you are using. Either way, it is insidious and evil and Im so very sorry that you are having these sores happen again. I am personally missing out on a big family function today because my sores and scars are so so bad. My face has been permanently ruined due to the scarring and I can barely cope with it. I honestly would rather have any disease on the planet other than this. What is your dermatologist who prescribed the accutane saying about these new sores?
@25years I posted an update above - looks like isotretinoin is not the answer. I'm back to square one. I'm revisiting posts again & saw some of your older ones. Did you see any improvement after the itraconazole? Secondly, I think it'd be wise to do some research on your biopsy results that showed arachnids! I don't know why your doctor decided to dismiss that. You are pulling things out of your skin that are reminiscent of spider webs. I will be reading up on this. Any updates on your end? I'm devastated.
The meds were helping, but the doctor refused to continue them because they said it's eczema? I'm like damn! Finally got help and they won't keep it going? I feel like spider webs or something? It's strange because when the hairs come out from my skin the sores heal! My sores would last months and years in the same place! Out of everything I have done, the athletic tape has helped me the most- I don't know why? The tape is pulling out "bad stuff" from my skin. Recently they put a tube down my throat and said my stomach looks good, next week I'm getting a colonoscopy (yikes!). One blood test I did was the
@25years I posted an update above - looks like isotretinoin is not the answer. I'm back to square one. I'm revisiting posts again & saw some of your older ones. Did you see any improvement after the itraconazole? Secondly, I think it'd be wise to do some research on your biopsy results that showed arachnids! I don't know why your doctor decided to dismiss that. You are pulling things out of your skin that are reminiscent of spider webs. I will be reading up on this. Any updates on your end? I'm devastated.
The meds were helping, but the doctor refused to continue them because they said it's eczema? I'm like damn! Finally got help and they won't keep it going? I feel like spider webs or something? It's strange because when the hairs come out from my skin the sores heal! My sores would last months and years in the same place! Out of everything I have done, the athletic tape has helped me the most- I don't know why? The tape is pulling out "bad stuff" from my skin. Recently they put a tube down my throat and said my stomach looks good, next week I'm getting a colonoscopy (yikes!). One blood test I did was the
Immunoglobulin A, mine is 391ml, normal is 47-310. Reading about it this is from alcohol - which I don't drink, parasite infection, auto immune, this GI doctor is the first doctor to run all these tests on me! I am determined to cure it! It's strange how I went from wounds all over me to lines of hairs? I wish someone would test these hairs?!!!
This is a example of how my skin feels, with the large wound, surrounding little ones and the hairs underneath the skin. I wish I just had a name for this.....