That secret condition: Morgellons Syndrome

Hi, gang!  I apologize for being absent for a few days.  I am a week behind in reading posts, and commenting on them; I don’t think I will ever get them all, without chopping off about half of them unread.

As if my life isn’t weird enough, I recently found out what my skin condition is, though I don’t have a doctor’s backing yet.  About 80% of the medical profession says I am imagining this.  Well, sorry, no.

It is Morgellons Syndrome. (The photos at this link are quite graphic, and somewhat gross.)   Couldn’t be something ordinary or normal — I have to come up with a condition that most of the world believes I am making up.  Well, I’m not.  I have been removing fibers from within my skin for around three years, now, and none of my doctors recognized the symptoms, and some of them suggested that I need psychiatric help and medication.  I have read in one forum after another people who state, without any evidence, that these red and blue fibers are from clothing.  I assume they are alleging that everyone who has this condition has worn nothing but the same shade of red and the same shade of blue clothing, and no other color.

Needless to say, my mind has been elsewhere for the last few days, and I haven’t felt much like blogging.  I will, soon, but I must ask your patience for a while longer.  If any of you have any helpful information on Morgellons, please let me know.  I am checking in on people’s posts randomly.  If you post something you want me to read, leave a comment somewhere and I’ll find your post.

Thank you for your love and loyalty, everyone.  I’ll be back soon.  I hope everyone is doing well.  Love you all!

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13 responses to “That secret condition: Morgellons Syndrome

  1. One thing that I think you can get away with using even with your other med conditions that has helped me tremendously with my morgellons is solarcaine spray the kind called cool aloe. it is made with llidocaine, to treat burns/sunburns but ive found using it on areas that are nothealing or itching from the morgellons works great at relieving the itch and resolving the lesions.. i was looking for a product with benzocaine, but settled for lidocaine…wanted for the mite killing benefits, lol…best wishes
    Craig

  2. Hey u dont know me, but i came across your post when i googled morgellons. I have had this for 5 years now, and slowly more info is coming out on it. It very well be related to Lymes. there is recent article by a groupl called F1000 that is a good read http://f1000.com/716597867 this is the paid version, but look around and you can find links to read it for free. A friend of mine in Australia has found a Doc that is treating him and going on the bovine fiber disease that some say this is also related to.. either way just know there is a lot of us that have this and you arent alone. Be careful not to be using steroids for the itch, ive heard a lot of horror stories by other sufferers that had long term problems having had used the steroids.. best of luck
    Craig

    • Craig, thank you so much for your kind words of support and encouragement. A message I needed to read as I sit here looking at the mess on my left arm. Now, I am adrenalin-suppressed, treating that with hydrocortisone. The trouble is, without the med, I have catastrophically low blood sugars, Sometimes I feel stuck, no matter what I do. Thanks for the iknfo and for the visit! Wishing you well, and happy!

    • Thanks — the fibers are there — I have witnesses, though I really don’t need them. The itchy ulcers are enough to merit care. My PCP has prescribed a med for the itching, which seems to be working. Thank whatever holiness is listening!

  3. I’m way behind with my reading & commenting too. Take care of YOU, we’ll be here. I hope you get some answers soon.

  4. Yeah, I went and looked it up after your other post. The two things I noticed was a) it’s all in your head even though b) all you have the same symptoms. Uh-huh. Sounds like more CYA talk for “we don’t know” but don’t want to admit it.

    I didn’t see much though by way of how to treat it. I can’t help but think it’s an outgrowth of some of the other problems you have.

    Nancy

    • No one has identified a treatment, mainly because no one wants to spend any money on it. I now have meds for the itch, but nothing to keep me from trying to pull those tiny fibers out with tweezers. It could certainly be an outcrop of something based on one of my other conditions; current thinking, however, is linking this to Lymes Disease, and I knock a tick body off of my arm about 4 years ago. Nothing like Lymes happened, so I just forgot it. I’m going to be tested now, you can bet. Thanks for your encouragement, your ideas, and your support!

  5. I, too, am having difficulty getting caught up on reading and responding. I clicked on your site because you are the one I “worry” about. I know, it sounded odd to me when I thought it but there you have it. Now to start with , just because the medical professionals haven’t got a clue does not mean you are imagining anything. I googled this syndrome as I had not heard of it before; it certainly is unusual. Stick to your guns and probe for answers. In the meantime, try not to get too wound up about it, enjoy life, blogging, your walks and your family. You are making great strides, my friend.

    • Thank you so much, eldy. I firmly believe in that kind of connection, and I really am grateful for your concern and your encouragement. I am staying active, (for me,) outside talking to people, still working — but at night, I just want to scream if I see one of those fibers. The doctor gave me meds for the itch, and they seem to be working.

      Thanks, again, eldy. I find my life much easier, for knowing my blog family. Blessings be!

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