Undiagnosable, untreatable, life destroying, illness with sometimes unbelievable symptoms!!!:-('

Posted , 12 users are following.

Hello...I am a 46 year old man that lives in the NE USA. I have been suffering for years with an undiagnosable, untreatable, life destroying illness that matches nothing... ANYWHERE.

I will start by telling you what my current symptoms are, followed by confirmed health issues and life issues that may have contributed to it.

I have purple lesions from my feet to my head (really bad in my legs and rear). They scale over often,scab up, ooze yellow oil and bleed. they have been spreading all over me for the past 3 years. My skin itches on top but stings down deep. There's a continuous shed if what looks like dead skin, but is always triangle shaped and seems to come infinitely out of these lesions. I am losing the ends of my fingers, and areas between my skin and bones everywhere the lesions are.

I have lost all my teeth, a lot of my vision, decreased hearing, my hair is patchy everywhere. I am losing weight @ an alarming rate. Blood tests show I am anemic. I am weak, tired, and always in pain (head aches, muscle cramp's, joint pain ).

I can't shower because I bleed, large tears in my skin open up, I get really nauseous, & the pain is intolerable.

I have been to every kind of specialist, ER's, clinics, etc...no solutions, treatments that work, or hope for a DX. The hospital's won't help me, my doctor's are out of ideas, and I am afraid this will kill me if I dont figure it out.

I welcome questions, ideas, or let me know if u r experiencing the same. Thank you...

1 like, 22 replies

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  • Posted

    hello, im wanting to ask some questions , please bare with me, because i myself have gone from doctor to doctor to be told saboric dermatitis. Believe me if what i have s that, it would be cured by now because if any dr ever had this, they wouldnt give up finding a cure. ok my questions, ill number and if you want to know why i asked thats ok . #1 have you soaked in a bleach bath every other day to soften skin? #2 have you used any repellents? if yes ,does your skin look as though a cat clawed you? a long scratch appears? and itching is intense? #3 have you rubbed vic's vapor rub on affected areas and itching goes away? but it pulls out black dots out of youre skin? and #4 does it seem like you have developed freckes or moles on your skin that seem to have appeared over night? All of these things have been going on with me, but years ago when i first started noticing strange things with my skin i noticed triangular shaped skin shedding, always triangular shaped, i kept getting stuck on " how could skin shed in the same shape all the time all of a sudden?

    ive been really going crazy trying to figure out what I'm dealing with, i believe after hours and hours, day in and day out that its some kinda worm from a fly. i havent found a doctor that has given much concern to what im going through to confirm, but i havent given up hope yet that ill get to the bottom of this, soner because like you i cant live this way .

  • Posted

    i have never used the treatment u used but I do have the lines of "scabs" u mentioned as well as periods of extreme itching. i take Benadryl daily and it seems to help. i also have the trianglr shed all over my body now. bad on legs hands, face and head. i can't shower now because large areas of my skin and everything underneath it wash away. It also causes severe bleading.

    there seems to be a layer that looks like skin but washes away only to reveal large areas if missing flesh. I have lost sensation in my finger tips, surface areas on my legs and arms, and inside my mouth.

    My clothes get covered in these triangle sheds and i cant get them out. 3 hour wash cycles, 2 hours in the dryer...and still there. when I clean myself a thick yellow oil cover's me and I get nauseous.

    I also remember being bit by a large black fly 5to6 years ago and the bite was painful and took forever to heal.

  • Posted

    hi there..your post caught my attention because my dog i put down not so long ago was named zeus...i named him that because he was a rotweiler but was scared and timid of everything.thought it might rub off if i named him something strong. turns out he was very sick and i was only able to have him a couple years. but enough about that. i dont have any advice or information to give you. i just wanted to say that im sorry that you are going through what you are going through. i truly hope you find someone or something that can make it better. atleast some answers. its the absolute craziest thing to me that now, this day, we still dont have more medical answers. we turn to doctors for help when its obvious we cant provide the necessary treatment for our ailments..atleast with me i hate going in there...but usually going in with the thought that well ill atleast ill be better even though this sucks...the thought never crossed my mind that i might not get better...even worse NO ANSWERS...its very scary and ive never felt so alone...ever...so i dont know exactly what you are going through, but i do hope that u get a break soon and that things will get better in any kind of way....take care... (sorry if this post is lame. just felt the urge to say something)

  • Posted

    Hi Zeus dog. I have been following your posts. I feel like i have a similiar thing or the same thing. I just started noticing the skin shedding on my lower legs and face. I have been getting scalp scabs. If i pick them they ooze some kind of sticky clear looking liquid but also bleed. They don't usually itch. Over the past few yrs my legs have been swelling up right down to my feet. It still happens although not as severe but the newest symptoms are shooting pains throughout my legs and feet. like someone is stabbing me with a cattle prod. I am now getting what looks like varicose veins. (which i never had before) My toes and feet are going numb and so are my fingers. The past 2 wks i have notice when im in the shower my arms and feet swell and all the veins expand and come to the surface of my skin. They look they are gonna explode! I just saw a new GP who sent me to lab for blood work. They just called the other day and said everything is fine. I call b.s. on all of it. They also asked me who my prior dr. was...I do know everything gets documented everytime we see a Dr. and ALL of our records are online to be viewed by each Dr. we see. I'm sorry but i have MULTIPLE infections w parasitology lab to prove it and i am being IGNORED. I am at my wits end. If i come up with any answers i will let you know. Go online to Parasitology Ctr in Arizona and order one of their kits. Check to see if you need a script first. Good luck. Keep us posted.

  • Posted

    i also have something on my skin that the Dr's aren't too worried about trying to help me with.

    I have been using a solution of (ground finely) oatmeal, tea tree oil, and tumeric, the oatmeal helps to dry the sores out . Put it on your body and leave it on for at least an hour. Then bath or shower and put tea tree oil on the worst spots. It helps, but isn't a cure.

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