My hair moves. It feels like it bites my face so I keep it sprayed back with hair spray because it really hurts. It pokes in my eyes and nose and drives my ears crazy. This has been my worse problem. I know it sounds insane, but it is true.
Does anyone have a good solution? I really do not want to shave my head.
yeah. i know it sounds crazy. i remember telling my doctor that my hair was dancing. she really thought i was a nut then. but when i stood in my bathroom facing the mirror, i was under the bathroom heat lamp.I looked like Medusa, you know the mythological siren with the snakes dancing on her head. it feels like a scifi moment. and yes I agree, it is like they try to get at other parts and bite or start a new spot.
I have really long hair which i debated about shaving because i had such horrible ulcers all over/ i think it is actually easier to have it long because i can pull or pin it out of the way. now i apply the DSPs and it heals the lesions. as for the biting and moving...i have had my head wrapped in a turban now for over a year. i remove it to wash my hair. i make sure that i comb through the hair with a comb so that the tangles it creates can be pulled out along with the blue and red fibers. I cover the wounds with dsp and sterile bandages, then a white washcloth. I wrap the whole head tightly in a turban. the hairs can't get to my ears or my face that way. i don't think they like it. I had such a horrible head that i worked with the burn unit at the hospital and even ended up with an aneurysm (sp)
Anyway, i was told that i would need plastic surgery for the back of my head and that my hair was gone forever. well the weird thing is that i used the dsp and my h head is almost well, all the hair has returned. I see three kinds of hair on my head. there are very fine silken threads (these are the ones that usually try to bite me) , very coarse twisted hairs and clear thick white shard like hairs.
my hair was always the one think i received compliments on and now it is coarse, falling out and yes it attacks me too. It is good to know that we are not imagining these symptoms. I also grew longs hairs in my private area, hairs on my legs and arms. the skin was like i had chill bumps at first, then coarse and dry. what a nightmare. i also use the dandruff shampoo and lavender creme rinse.
The good news is that if your think your hair is gone forever, don't despair. no one could have had any worse head than mine was and as soon as i got the core of the thing out and kept the creme on it came back almost instantly. So anyway my suggestion is wrap your head, wash hair in sulfur shampoo, use dsp on lesions. best of luck to you. so long from Medusa
can anone tell me how to insert a picture please. thanks
The hair thing is the worst part for me, I can deal ok with the rest. Like you, I had beautiful long hair down to my buttocks. My darling husband loved it and did not want me to cut it. Then it began to thin out at the crown. I tried a lot of products, but nothing stopped it. Everyone told me it was probably because my hair was so long and heavy, that the weight was pulling it out, eventhough I wore it in an updo most of the time.
The beautician said if I cut some off, it would grow back in the thinning areas. So I did, I cut 22 inches off, then after I got this thing disease, I broke out in a rash where ever it touched my body, face, or neck, and ears. And it itched really bad. Then I noticed it moving and it would wrap around my neck, go up my nose, in my eyes, and poke itsself into my cheeks like it was putting seeds or eggs in the skin. Then The white things began to emerge from my facial skin. Then I told my husband my hair was alive like worms and was poking its eggs into my skin and makeing more worms. He thought I had lost my mind. He said "you know they put people away for talking like that".
I also told the Dermatologist about it , and he looked at me with sadness and said "you know, we refer these kind of symptoms to mental health doctors." He did not even look at my skin or my hair. He just assumed I was Nuts.
I swear this is true. Even if one hair comes loose from my hairsprayed head, I can tell. If it is a hair in the back occipital area, it will reach around to bite my ears. For some reason, they really like to pester my ears. I bought three wigs to wear over the hair, and after wearing one wig three times, it began to do the same thing my hair did and I developed a severe rash around the back of my neck where the wig touched it.
So, I gave up. I wear a goofy hairstyle with alot of hairspray to hold it down . It looks like wet plastic, but it stops the pain. I wash it out everyday and reaply it. My body hair is a whole new story. I had better not go there.
Post by praying4usall on Feb 23, 2008 3:07:41 GMT -5
You mean like the big too thick & long dark eyebrow you want to pluck, as you watch it go back into your skin so you CAN'T?
Or, where you check a spot on your chest where there is a little growth, and it itches by it, so you look with your cheap little 8 X's magnifier, and there are two little black 'worms' peeking up out of holes (your PORES), and they slip back in before you get near them with your tweezers!
I live this. But it isn't real to me, it is too Twilight Zone to the core, so how Can I tell a Dr. who didn't even see it, and will call me DOP if I were dare to tell him this total insane malarkey that we have come to know as our now daily lives???
Ps 25:2-3 In you I trust, O my God. Do not let me be put to shame, nor let my enemies triumph over me. No one whose hope is in You will ever be put to shame... (NIV)
kitty2014: I would be very interested to chat with you! .... Can give you some useful tips on diet etc that reduce the symptoms dramatically! Get registering, I'll catch ya then! Horrid on here with limited blocks!
Jul 17, 2015 16:19:50 GMT -5
Admin: no longer need activation here; it is immediate:) Morph said that Lymebusters is blocked from any new folks; but I don't know personally-
Jul 17, 2015 17:05:16 GMT -5
morph: I do not know of any block, I do not see any flaming going on so, it seems some angel is keeping the site free of flaming the fires. If that is the case, more power to them, I like a gentle mundane sharing of ideas
Jul 18, 2015 11:54:17 GMT -5
morph: One without, magic, crystals, hucksters selling potions, and bitter narcissist, its our obligation to dispel myths, duty to protect new members from scorn (diagnosis of DOP), and the delivery of the symptoms as we have endured them
Jul 18, 2015 12:00:23 GMT -5
morph: The idea from some, oh I do not know if I have this, your dreams of a one symptom disease is over in America, this disease raises your issues from singular to encyclopedia OVER TIME, 43 years with this malady has shown me the width and breath of it.
Jul 18, 2015 12:03:07 GMT -5
morph: As we die and new are born with it, hopefully human DNA can adapt it into its defense arsenal, use it as a mechanism of protection instead of one that destroys, certainly it is quite encompassing of all of our body operandi
Jul 18, 2015 12:08:55 GMT -5
morph: Maybe, just maybe, people will not have to have soft and beautiful hair, yellow, red, brunett, maybe they can all be born to have indestructible fire proof fibers sprout from their bodys, colors like red, purple, clear, amber, and the blue I like so well
Jul 18, 2015 12:12:28 GMT -5
morph: I would just like to have a little fun, and it seems that is quite hard to do, Anyway, good luck to you fun guy, hope you can get this under control that is suitable for you to go on without having to carry such a heavy load.
Jul 18, 2015 12:16:40 GMT -5
not quite insane: I have noticed I havent had a flu or cold ever since I discovered ive got morgellons, Im kind if cured for now but I know it is still there, just no visible signs, movements atm but yes have not had a cold, flu in a very longtime hmmm..
Jul 20, 2015 18:38:59 GMT -5
Admin: Yup that is one of the nice things that occurs, no cold, no flu just weirdness and off the wall stuff that is hard to explain
Jul 20, 2015 19:13:21 GMT -5
La La: My name is La La, I've had Morgellons for over 5yrs,it went dormant for 2yrs,then I got hit HARD,very Hard. I'm wondering if any one out ther has had this head to toe? Head quarters being my personal area and face?.
Jul 20, 2015 19:38:06 GMT -5
La La: Aloha,
Jul 20, 2015 19:38:53 GMT -5
La La: Aloha, is there someone I can talk to that has this very bad bad in the personal area,and head to toe, very bad in the face as well. I know it's in every hair folical on my body. Many strange items exiting from my skin,large and small.sensative to electric
Jul 20, 2015 19:45:39 GMT -5
morph: Lala Aloha I want that name in my second life or is it my third, I do not know. I did not ever get heavy issues in groin, but did have INSTANT swelling in the lymph nodes very bad, My face was textbook skewered, I looked like plague, arms and legs
Jul 22, 2015 15:27:02 GMT -5
kitty2014: Not quite insane - Yeah, same here! No colds, only bit of a runny nose and sneezes on and off, but not from cold virus! Have you had no bogie's either? I haven't for about 4 yrs! Sad to say but I'll be glad when I start all those nuisances again! Lol!
Jul 25, 2015 0:27:23 GMT -5
kitty2014: La La - Yes, I have it head to toe, although minor symptoms in comparison to what they were! Hair being the main problem; then ears, eyes, nose and face being affected slightly! Little fungal/morgie hairs all over but no lesions now! Personal area has only
Jul 25, 2015 0:32:35 GMT -5
kitty2014: started to be affected after stomach/abdomen problems ceased (last month) but suspect it's due to disease being pushed out of my body with the other reduction of symptoms!?
Jul 25, 2015 0:39:23 GMT -5
Jul 27, 2015 15:21:11 GMT -5
Kfaye: I have had them head to toe. On very deep in cheeks. I am going to be tested by the CDC for two infections after visiting Mexico in last 5 years.
Jul 27, 2015 15:21:38 GMT -5
morph: CDC really, what are they going to look for, how do you rate a test or looking over your results for anything. Just wondering
Jul 27, 2015 18:13:24 GMT -5