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Post by emilyCT on Aug 3, 2008 21:59:03 GMT -5
For those of you with heavy scalp involvement....nodules, channels, large areas of hair loss, and the oftentimes unbearable pain and disorientation that results from all of this (esp. during a flare-up):
Im in dire need of an effective treatment approach or even short-term remedies, as this has always been and continues to be my WORST morgs symptom.
i've been on heavy duty antibiotics since january for chronic lyme, babesia, and bartonella - initially the scalp symptoms waned in severity...but since i started working again three months ago it has grown progressively worse to the present day. at this point i have many nodules, one or two large channels, a soft-ball size area where the hair has "disappeared" (i.e. some fell out in clumps but most appears to be sub-dermal)...the other night i watched and felt these nodules or wahtever is underneath them move up and down my scalp...what a nightmare this has been.
anyway, i need help...nothing i throw at this seems to help...any suggestions? - emily
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billie
Junior Member
Posts: 98
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Post by billie on Aug 3, 2008 22:09:02 GMT -5
that is how my morgellons started about 20 years ago. on my scalp. i would pick at these sores of course, i thought they were pimples, because i had acne so bad, cystic acne that i took accutane for. i also would pick at these white things around my nose and chin, never knowing that i would have this nightmare going on in my life for the last 4 years. i have always been sickly, every symptom of lyme. i was diagnosed with lyme and babesia about 2 months ago, finally, someone who believes i am sick. this disease has ruined my life. i used to lose my hair often and still do. i think that shampooing with selsun blue and head and shoulders helped me. i have used many different things. i have these things all over my body. i know all about how they work, buy don't know if they are from the babesia. that is what i think now, however i have brown growing all over me, i think it is some kind of fungus and the bugs grow underneath it. you can write to me anytime.
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Post by kamefromsky on Aug 3, 2008 22:16:48 GMT -5
neutrogena tar and 3% salycilic
nizoral shampoo
suave coconut shampoo and conditioner
head to toe application of virgin coconut oil
2 tables spoons a day of virgin coconut oil internal
pre shower treatment with various natural oils
frequent hair trimming
ketaconazone 2% prescription
vigorous scalp massage
specific vitamins and supplements nutrients for the hair
willard water on hair and scalp before bed after hair dries
sip willard water all day
colloidal silver directly onto the scalp
i now have enough hair to make gino vanelli turn green
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Post by scrambo on Aug 3, 2008 22:18:20 GMT -5
Sheesh. I am so sorry for you guys. I had a friend who had the head lumps and hair-fall out and I had no idea tht eventually I would be struck with this nightmare. I am very lucky as my scalp is not much involved.
I have approached the sebacious gland involvement as if I had some monster follicle mite. I think whatever this creature is, it also produces the fibers.
Anyway follow toni's routine of dairy product application followed by the application of hand sterilizer with the ethyl alcohol. Also rubs of vinegar. This can help drive them out of the pores if not a cure.
Good luck.
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Post by specuelatin on Aug 4, 2008 3:35:27 GMT -5
EmilyCT Welcome, and have a look at this thread for even more suggestions. I was looking for my thread on Coconut Oil, mixed with Anise Oil and YlangYlang oil, which was used in a study treating resistant lice in the holyland. It beat out Permithrins in a controlled study. Some got relief here. Anyway, the treatment is described on this thread, Need HairAdvice for my Child.. lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=3746Good luck, spec
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Post by godog on Aug 4, 2008 8:49:09 GMT -5
Viodine, read page 4 from the Godog's Frog thread. Toni says my hair is healthier than it used to be. I have been using Viodine, an animal shampoo I got from the farm supply store for bacterial and fungal skin infections. It helps with the itching and no more lumps and I guess my hair shafts don't have the morgie symptoms anymore, according to what she sees through her scope. It makes your scalp feel much better, it's about 6 or 7 bucks.
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Post by toni on Aug 4, 2008 8:57:30 GMT -5
EmilyCT, I know there's many things to try, and it's all trial and error for what might help and work for you. I too had a "moving nodule", not on my head...but only after I had the contents of it "taken out" did it stop itching and moving. Everything that came out of it was this white stuff, that felt dry to the touch, and I sure don't know what it was. (still have it in a vial) I can only tell you about the (mix I use) that helped me, and maybe this might help you too. I take plain yogurt and mix that up with just milk. Just enough to make it hair conditioner consistency. Then apply that liberally all over your head and allow it to get bone dry. What I noticed was when this mix dried, tiny like salt granules would form on my scalp, and I viewed those under the scope and they contained many tiny tiny black specks. I found that the milk and yogurt mixed together and left on anywhere on the skin, seems to suck alot of this stuff out of our skin. I don't know how, but it does. After the milk/yogurt mix becomes bone bone dry, then wash it out with an antimicrobial soap. ( I've used dishsoap with the antimicrobial) on my head for shampoo many times. On my body, after I wash off the milk and yogurt mix, I use (in the little pump bottle) it's a gel called (Waterless hand sanitizer) which is the ethanol alcohol. You want to always followup with washing the yogurt/milk mix with some kind of antimicrobial, just for "good clean sake". The key is to allow this mix to dry, because in drying is where it seems to do it's thing - the removing of the teeny black specks. Also you can mix in a spice called "ground cumin" into the milk mix for extra umph. It's really quite helpful. I was reading something yesterday that I found interesting in relation to your hair loss. Have you had your thyroid checked? Because hair loss can occur from hypothyroidism too, which it "seems" like Morgellons can kick that off too. PS, and yes about Godogs hair strand, which is posted on another thread. I've taken pictures of her hair, and the segmented colored strips (which look like Mark Darrah's pictures) of our hair, well...Godogs hair appearance magnified has the segmented areas, but not at the root area, it's grown out from the root where the segments are. (I know if you don't know what we're talking about this sure won't make sense). But just in looking at a hair, (not that I'm any expert) it "appears" that if the segments were at the root, the person would be more infected, than if the segments were grown out on the hair. Just going by logic there on appearance. Here's the link to Godogs hair pictures. lymebusters.proboards39.com/index.cgi?board=rash&action=display&thread=10365&page=4
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Post by emilyCT on Aug 4, 2008 20:00:38 GMT -5
really good feedback - thank you all - i want to reply in more detail and i have more questions but have a pressing matter i have to discuss first -
i just used extra virgin coconut oil on my scalp/hair in the shower...and now i realize why we're supposed to use virgin...my hair is like saturated grease and not in a oh so soft kind of way...
should i wash this out because i know having our hair damp is bad...someone let me know asap because i'm sitting here rather anxious...
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Post by toni on Aug 4, 2008 21:03:38 GMT -5
Oh goodness. I'm just now seeing your post. I've left things on all night, 'I don't have any lesions and never have on my scalp'. Now, I have had much of the crawlies inside the scalp, and hair that moves on it's own. I can totally relate to your hair being all slicked out, I've used everything on mine too. From Vicks (almost a jar) to flour and water that dried like concete. And I go to bed with wet hair, cause it takes forever to dry. So...I can only speak for things I've done. When I've tried to wash out "vaseline type products"...I use dishsoap to help cut the grease. And you can also add lemon juice to a small amount of shampoo too to help "cut the oil/grease" from your hair. You'll go through alot of shampoo or dishsoap removing the coconut oil, (been there too) but eventually you'll get it out. When I did the "flour and water mix" one time, put 2 cups of that batter on my head, I almost needed a chisel to remove it. I allowed it to stay on for 6 or so hours and I mean it was just as hard as the floor I don't know any other way to remove the oil you've got except looooots of shampooing and rinsing in really warm water. And I read your post again, I see it's that you're wondering if you should leave that in your hair all night? Just my thoughts, but I don't know of course....for me, it's never caused me any problems leaving anything in all night long. Take care.
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Post by godsgrace on Aug 4, 2008 22:33:28 GMT -5
emily, sometimes sprinkling baby powder on greasy hair will work to absorb the oil and then you can wash it out.
When I was a kid, I got into a "bathroom war" with my best friend, you know, toothpaste shaving cream ect... It was all fun and games until she put a mess of vaseline in my hair.
I couldn't get it out and then my aunt suggested the powder.
I had to do it a few times but it worked.
best wishes
godsgrace
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Post by robertalouise26 on Aug 5, 2008 6:46:30 GMT -5
Dear Godsgrace please excuse me for using your post to send a message to emilyCT. I have been in bed all day I am not very well but was soo worried about emilyCT that I just want to pass this message on to her. Dear emilyCT we are all told from our infant days not to go to bed with wet hair. It just isn't true love. Many many many times I have gone to bed with my hair saturated in white vinegar with a scarf around it. I have smothered my hair in conditioner that contains alcohol and left that on all night. Aloe vera shampoo and conditioner is also very good. Using a scarf to tie your hair up is very good it absorbs the moisture and keeps your head warm. I hope this helps. I cann't type anymore as I have very painful hands and wrists. I send my love and hugs to all. Roberta (Robbie)
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Post by godog on Aug 5, 2008 7:17:40 GMT -5
Hahahaa Toni, that is so funny! I can just see you with your concrete head! Oh boy, what a mess that must have been. What were you thinking?!!!! I do the paste thing, but never let it dry and not on my head anyway. Heehee.
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Post by toni on Aug 5, 2008 7:43:01 GMT -5
haha Godog, I know, ;D (I'm cracking up now thinking about it) cause it was bad, and then it got even worse. I went from the concrete (dried batter) head, and when trying to get it out of my hair under the warm shower water....I then had the gummiest mess of all times in my hair, cause man that flour and water turn to gum when it gets wet. I don't know how I ever got it out, but I sure spent more than half the day in the shower.
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Post by justhanginin on Aug 5, 2008 8:17:34 GMT -5
EmilyCT, On the area where you feel movement try coating it with Vick's Vaporub. I did this on my face and blasted out what appeared to be tiny larvae of some sort. Never were identified ,the derm just said WOW! when he looked in the jar, He prescribed six weeks of sulfur. For washing I always use Nizoral Shampoo. That controls fungal issues.
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Post by emilyCT on Aug 5, 2008 22:45:44 GMT -5
hi billie - i bet you've had lyme and/or babesia and/or other coinfections for at least two decades then...what a shame it took so long to even get that diagnosed. what a shame. i think there's a fungal componant too amassed under our scalp...and def subdermal bugs...idk what kind but i'm starting to think it's a mite-like creature and possibly morphs and/or attracts bugs from the environment. last summer/fall i had flies comes out of the nodules on my scalp...l.i.t.t.e.r.a.l.y. what a nightmare. not sure if you'v ehad that symptom but it was ongoing for awhile...i dont know how i made it through that time without killing myself actually. i know of a handful of others who have or had that symptom. wtf. that is how my morgellons started about 20 years ago. on my scalp. i would pick at these sores of course, i thought they were pimples, because i had acne so bad, cystic acne that i took accutane for. i also would pick at these white things around my nose and chin, never knowing that i would have this nightmare going on in my life for the last 4 years. i have always been sickly, every symptom of lyme. i was diagnosed with lyme and babesia about 2 months ago, finally, someone who believes i am sick. this disease has ruined my life. i used to lose my hair often and still do. i think that shampooing with selsun blue and head and shoulders helped me. i have used many different things. i have these things all over my body. i know all about how they work, buy don't know if they are from the babesia. that is what i think now, however i have brown growing all over me, i think it is some kind of fungus and the bugs grow underneath it. you can write to me anytime.
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Post by emilyCT on Aug 5, 2008 22:52:49 GMT -5
kamefromthesky -
which vitamins and supps for skin/hair?
what does willard water do - what is it?
colloidal silver directly onto the scalp - which kind? will it burn or anything?
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Post by emilyCT on Aug 5, 2008 22:56:12 GMT -5
scrambo - i think it's some kind of mite too...def...where do i find toni's routine? i'm sitting here with my head smothered in yogurt/milk and covered iwth paper towels lol so i hope that's part of the dairy application! thanks! I have approached the sebacious gland involvement as if I had some monster follicle mite. I think whatever this creature is, it also produces the fibers. Anyway follow toni's routine of dairy product application followed by the application of hand sterilizer with the ethyl alcohol. Also rubs of vinegar. This can help drive them out of the pores if not a cure.
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Post by emilyCT on Aug 5, 2008 23:27:16 GMT -5
hi specuelatin -
what kind of coconut oil (virgin, extra virg...idk)? also, how what is the ratio to coc oil, anise oil, and ylangylang oil? should i leave it on my scalp for awhile or rinse it off rather quickly?
i read that thread you pasted too...got some suggestions from there too...good thread. i'm putting a list of treatments together and every night i'm just trying something new...idk what else to do at this point i'm going bald and covered iwth nodules/channels.
thank you by the way~
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Post by emilyCT on Aug 5, 2008 23:35:21 GMT -5
hi toni -
i know what you mean about the white nasty crud - that's all my nodules are filled up with - its just plain nasty and there's so much stuffed under my scalp. i tried the yogurt/milk thing tonight...sitting here and its getting pretty close to bone dry. i'm kind of an idiot but can you give me examples of antimicrobial soaps...
yeah i have hypothyroidism (ever since i've been sick) and i'm on meds for it. but the hair loss is totally related to the nasty areas of my scalp those engulfed in nodules/channels - some of the knotted nasty hair comes out in clumps when i run my fingers through what has become the nappiest nest of hair no matter how often i straighten it....but the rest gets legit PULLED UNDER MY SCALP and seems to be knotted like a nest underneath it...its nuts. just nuts. and the hair on my head-at least most - are segmented at the roots and even without knowing this i know my scalp is heavily infected and bad news getting worse by the day...
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Post by godog on Aug 6, 2008 7:07:23 GMT -5
Viodine will clear your scalp up of all that.
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