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Misdiagnosis or just a horror case?

Posted , 8 users are following.

Katelyn830
Katelyn830

One day I woke up with light red dots all over my wrist and palms. It looked like someone took a pink highlighter and made dots all over. That went on for a good 1-2 months. I didn't have scabs, they didn't hurt, they just itched. When I scratched the ones on my wrist enough, it would become extremely pink/red (i'm super pale btw) and kinda raised. 99% of the time, the dots/spots were flat, not raised like hives although a few times one or two were hive like. I checked my bed for bugs, washed all my bedding and clothes and nothing changed. I went to my doctor to see what it was because it had worsened to the point my wrists were COVERED and it started spreading to my knees. She told me to go to a dermatologist.

I started getting them on my thighs, inner thighs, tummy, and some times on my chest.  I also had them all on the bottom of my feet, around my ankles, and in between my toes, but only like once or twice. I saw the nurse practitioner there and she said it was scabies, she looked for burrows and said she saw some. She said that they do not go on your face yet I had some the first day around my lips and one even slightly on my lip (which was gone the next day). She prescribed me medicine, it was a few pills, I followed the instructions (washed and sprayed EVERYTHING in my house) and things got a bit better over time.

Yet I still have them. Some days I have not one spot then the next day DOOM i have them on my arms, top of the hands, and legs. I take 2 benedryl everynight to help me sleep and to help with allergies and I've noticed that if i dont take benedryl everynight, thats when they pop up more. Every time after i shower or use hot water or am hot at all, they tend to pop up. I do have slightly dry skin. I don't know what to do. I just FEEL like its not scabies. The medicine didn't work. The washing and sprays didn't work. Its now been close to half a year of having whatever it is i have and i'm at a loss of what to do. Treatments aren't cheap. I was (and still am) on anti-depressants, anxiety medication, thyroid medicine,  and blood pressure medicine (for anxiety) at the time I took the scabies medicine. Could that have anything to do with why I still have the spots? I didn't ever go anywhere besides the store & doctors office (which was months before spots popped up) or see anyone besides my family when I got them, all whom did not get the spots/rash. Still, nearly half a year later, no one in my household has gotten them. I do have a cat who lives in my room but he never goes outside. We have 2 dogs and another cat. 

I added photos of what they looked like before I took the medicine. Now with they pop up they look like picture #3. Spaced out, almost like large pink freckles. They go away in a few hours to a day. 

0 likes, 17 replies

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  • Katelyn830
    Katelyn830

    Posted

    I just dont know what to do. I don't know if its truly scabies or something else. I cant do sulfur baths or any chemical baths because im very pale with sensitive skin. Water alone dries me out. I made sure to swith body wash, lotion, etc just in case its was a reaction to that and it nothing changed. 
  • marisss92664
    marisss92664 Katelyn830

    Posted

    I have the same exact issue and I cannot get any further help, doctors are USELESS!!   They tried medrol dose packs, straight out prednisone, permeth cream and nothing worked.   Finally this one doctor threw up his hands and said he didn't know what else to treat for but scabies.  A derm doctor and a express care doctor both said it was not scabies as it wasn't in your usual areas for scabies.

    My naturopath told me to pulll my bed apart again and use a lighted scope and look real good.   I was dragging my hand along the box spring and something bit me so hard it hurt worse than having a baby natural.  I looked on my nuckle and it was clear and a little white cast to it but tiny.  It was literally latched on like a LEECH.    I had to try a second time to dig it off my skin and it still hurts.  I lost the stupid thing on a white tissue.  Went to a stat care again and the QUACK of a doctor said oh it had to be tick. He wouldn't even get within 10 feet of me to look at the wound and just prescribed a cream.  THERE IS SOMETHING GOING AROUND THEY ARE AFRAID OF AND WON'T TELL US THE TRUTH WHAT IT IS.  All I know as I have seen this in the last two weeks for 3 doctors, none of them will physically examine the wound (wouldn't that be the logical thing to do?) and they won't get within 10 feet of you.   THEY KNOW SOMETHING!  

    Anyways getting back to what I recalled two days ago.  I was in virginia beach and visited the convention center and on the roof they have a window enclosed bird sanctuary with an open roof.   I spent an hour in there looking out the windows as it was a beautiful view BUT the view was distracting me from what was really in there.  HUNDREDS of birds, tons of bird poop EVERYWHERE.  Everywhere you looked bird poop.  So there I was touching railings, leaning on things and BREATHING in stuff.

    BIRDS HAVE MITES!  They BURROW and act JUST LIKE SCABIES!  But will not present in the same places as scabies totally.   These doctors are dropping the ball.  People that have rashes like ours that look like scabies and don't react to permeth cream or come back after several treatments ARE NOT scabies but bird mites, rat mites, mice mites or any other of the hundreds of other mites found in nature.  

    I know my life is over as it has been weeks upon weeks of this hell.  I have now had diarrhea for two weeks straight, am very dehydrated, feel things in my sinus, pull wormlike stuff out of my nose every single day and even feel like worms crawling in my anus (internally crawling).

    I hate the way this has gone but please don't ever think you are crazy.   It is not our fault doctors and useless, pointless and only interested in half arsing their jobs like everyone else anymore.  

    I don't mean to scare you but just letting you know you are not alone and you are probably in for a real hell of a nightmare of a ride.  

    • Katelyn830
      Katelyn830 marisss92664

      Posted

      Thats crazy! Thank you for sharing. Im so sorry for what you are going through. I hope things get better soon. I looked up what you told me to and one of the pictures looked EXACTLY like my spots!
    • Katelyn830
      Katelyn830 marisss92664

      Posted

      If what i have is bird mites, im not sure where they came from. I know there was a bird that got caught in my house a while back but we got him out 45 minutes later. Its just so weird how no one else in my house has bites. Whats weirder is how it comes in goes... I feel like im going insane.
    • brian60144
      brian60144 marisss92664

      Posted

      Marisss,

      I am also in Virginia and have been battling a similar situation for almost 2 months. Did you ever find out what you have? Is it cured?

  • marisss92664
    marisss92664 Katelyn830

    Posted

    I forgot to add the bumps you see (you prob already know this) are from your allergic reaction to the feces these horrible parasites leave on your skin, etc.   They are not, so I have been told, bites themselves.  The reaons the bendryl helps is to help with your allergic reaction to the nasty feces they leave on us.   GROSS!!!    I was on prednisone and it is the same deal, it allows them to keeps biting you undetected but rest assured you are still getting as many bites as before if not more.  Prednisone actually helps hide them and lowers your immune system so they can take over internally in your organs.  I am so upset.  I called a veterinarian to ask them what I could do to see if they are actually bird mites and they are clueless a****** as well.   We are on our own.   Google bird mite bites on humans and you will see others who have this.  All they did was either help an injured bird, pick up and discard a dead bird, remove an empty bird nest or have a nest on their roof and the mites came in.

    I am disgusted that there is no help for us (if that is what this is, seems to be in most cases).  I am calling the health department again monday for more advice now that I remembered about the bird sanctuary and they will probably be useless again.  Next I will try the cdc and that is all I have left.

  • marisss92664
    marisss92664 Katelyn830

    Posted

    I am wondering if the lip one could be a cole sore brought on by whatever this is.  Cold sores indicate a virus meaning whatever is causing these bites could be carrying a virus.   I have been experiencing cold sores as well.  Have  you gotten the diarrhea and feeling so dehydrated?   Have you been getting bad foot or leg cramps?
  • marisss92664
    marisss92664 Katelyn830

    Posted

    I have also been kicking around morgellons which I guess I don't want to accept that it exists or is possible.  Most doctors claim those folks are crazy but I have talked to enough of them to realize they have something and it isn't mental.  You can research the bird mites, mites in general and morgellons and you may find some answers there.  But never mention morgellons to a doctor they will label you insane and you will never get any further help.  Gives them an excuse to not take your seriously so I have been told.
  • fellowsufferer
    fellowsufferer Katelyn830

    Posted

    Buy permethrin on Amazon and apply it yourself.  If it's scabies, that should dry it up.  If it doesn't then you know it's something else.  Good luck.
    • marisss92664
      marisss92664 fellowsufferer

      Posted

      Can you buy the 5% permetherin on amazon I cannot seem to find it.  I would like to try another round myself but it is so expensive at the pharmacy, like 115.00 for one tube.  Thanks
    • fellowsufferer
      fellowsufferer marisss92664

      Posted

      Actually, you can buy an even greater percentage on Amazon, which may be a good move because scabies (like other insects) has evolved to be resistant to 5%.  Sure, 5% may kill some, but the ones that aren't killed, mate with others that aren't killed, making them resistant.  I've used the 36% straight with very few negative side effects.  There is also a 10% permethrin. For safety's sake though, I would recommend you buy one above 5%. If you buy one way above 5%, I suggest you cut it 50/50 with lotion.  That way it's above 5% but still safe.  Good luck.  
    • Katelyn830
      Katelyn830 fellowsufferer

      Posted

      Thank you! I have the prescription cream the nurse gave me but the thought of covering my whole body and sleeping in it sounds awful. Ill do that with what you suggested. Thank you so much!
  • tracy50607
    tracy50607 Katelyn830

    Posted

    what about impetigo?. sure that effects face area.
    • Katelyn830
      Katelyn830 tracy50607

      Posted

      I don't think that's what it was. None of my 'spots' ever were painful or scaby. Also they'd go away later that day. Just itchy. 
  • cikabutan
    cikabutan Katelyn830

    Posted

    Katelyn, have you confirmed it's scabies? Check out my post.. Thanks
    • Katelyn830
      Katelyn830 cikabutan

      Posted

      When I went to the dermotologist the first time she said it was scabies. I havent gotten a second opinion since then (which was months ago). I honestly dont know what it is. Some days I dont have one spot but then the next i've broken out in hives of some sort. Scabies seem to look different on every person!
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