|
Post by bannanny on Apr 1, 2005 8:00:37 GMT -5
Well, it's late (or early...depending on your hours) and I'm having another difficult time sleeping soundly, so I decided it was time to stop simply reading all the posts and join in... I already feel so close to all of you. I'll try to make this short, but I kinda doubt that will be a real success!! It's like finally being able to tell my story without being laughed at or being thought of as the delusional lady who lives on the hill! My problem started almost 2 years ago now. With me, I was driving home from town and just before I reached the road going up to the house, it felt as if something like coffee grinds or sand hit me in the upper face. I thought something must've come through the vent of my car. I live in the country and we have alot of rabbits, mice, ravens, quail, squirrels, and so on. I've even seen birds come out from under my car, trying to get shelter from the wind, which tends to blow at high speeds here at times! So my first reaction was it must've been bird mites possibly coming thru the vents, or something from the mice, as they love setting up condominiums under the hood of the car. Of course, along with that reaction was the one to get it off of me as fast as I could! OK, I'm gonna try and shorten this up by not telling you guy's every detail of my misfortune here...sorry, guess I tend to ramble. So I get home, jump right into the shower, and yep....2 years later.....the specks and fibers continue to homestead on me, in my house, on my clothes, in my car, and the worst being in my hair, which used to be long..now is short...and soon I just may be bald! I've bought the clippers and I'm about ready to have at it. It seems I have some type of spore that is continually being dispersed from these black specs and fibers, which were probably dispersed onto my face from one that was in my skin already. I live in shower caps, when I'm at home, because they seem to "pop" off of my head whenever they decide to do their thing. Unfortunately, from the popping off episodes, I've even given this to my dogs. Now they are suffering and I have never felt so bad as I do because of the fact that I contaminated them. I have gone thru clothes like wildfire, pulled up the carpet in my bedroom, re-layed the floor in the bathroom, and try anything I can imagine to try to control this thing....nothing works, as you all know. I don't know how to keep holding on at times, but I know there's no other way BUT to hold on. My skin feels like it has bubbles underneath it, and I get a real nice purple hue to it occassionally when these little creeps get more active. They also tend to have a microscopic sparkle to their horrid little selves. Does anyone else get any of these types of episodes? Oh, and I also seem to have a negative effect around anything electrical, as far as it temporarily going on the brink. I have seen soooooo many dr.s who were of no consolation to me. Delusional, didn't know what it could be, etc., etc. Altho, one dermatologist gave me Grivofulcin (not sure on that spelling), which is an anti-fungal medication, but it had zero results. And that was all he had to offer. But I finally was sent an angel, and was led to a dr. who is studying this Morgellons thing, and he confirmed that I had it from the microscopic samples from my head. I also have them emerge from my skin, when they feel the desire to do so. They do have a zippy type of sting for their size, yea? These Mor-jellos (as I so lovingly refer to them as) certainly have got to be what Hell is like. But we gotta keep believing that Heaven is still the place for help.......He's been pretty busy lately tho, ya gotta admit! So for now, I'll just thank God for the efforts of the folks trying to help us down here, and I thank all of you for listening. You are truly angels to me. I know I need you....I'm here if you need me.TEXTTEXT
|
|
|
Post by victoreah on Apr 1, 2005 9:28:59 GMT -5
Dear bannanny! Don't you EVER feel alone again...EVER! Oh yes, I and so many of the others here can relate to exactly what you speak of. (If you want to read my story go to www.caringbridge.org/nc/vickichicki and go to journal history and go all the way back to my first entry. Also read the current entry about my visit to the Lyme specialist clinic just yesterday. Feel free to email me anytime as well at MsVictorE@aol.com! God bless you and keep up the good fight!
|
|
|
Post by c on Apr 1, 2005 9:37:33 GMT -5
Welcome to the board. And good you found a doctor. Haven't been so lucky yet. What's he treating you with? Are you doing any better? And yes, quite a zing from such little critters! I believe too that heaven is definitely where we will find our peace, yet I need to find it here on Earth, NOW, for my babies. They can't grow up with this. What kind of life will they be able to have? I used to think of their teenhood and worry about the types of friends/boyfriends they would have. Now I worry, will they get to experience any of that? It's killing me. Where do you live? Thanks for posting. I need everyone here.
|
|
|
Post by Susan on Apr 1, 2005 10:17:36 GMT -5
Hi Bannanny, I Just wanted to say Welcome to the board. Sorry you are having to go through this. I have had this for over 3 and 1/2 years. I know that nice purple hue to the skin these are some of my Symptoms... So many... Burning, sunburn tint to my skin. itchy/biting/ stinging/crawling/ tingling, red bumps/hives like/trails like rash under the skin.skin weeping/oozing/sticky sometimes in patches sometimes all over comes and goes. Sweats, chills, fluish, sever fatigue, deep joint and muscle pain. blurred vision,sensitive to light burning tingling in and around eyes. Itchy hair, hair loss, sinus involvement, mouth burning, sores, drooling, gritting teeth, cough, congested breathing, heart pain, liver pain, stomach upset, diarrhea, bloating, I have this head to toe, burning/sticky/tingling hands and feet. (Kind of like athletes foot sensation,) foggy thoughts. dizzy spells. Big increase in dust like stuff but not dust in my car, house.
Hang in there and take it one day at a time. there are some really great people here they are a big help and support. I thank God every day for these folks. Your Friend in Tennessee. Susan
Hello to C and Victoreah, You are all in my prayers.
|
|
|
Post by adapted on Apr 1, 2005 19:55:17 GMT -5
Howdy, bannanny! I'm so glad you decided to join us!!! You know what I first did when I found this board? Aahahaha!!! I plunged in head first as soon as I got here, without reading anything except for the home page!!! I didn't introduce myself, or anything, because I was so excited that I'd found some of "my own kind". I couldn't believe it! (I scared a bunch of people without thinking.) Sometimes I'm good at that. (Scaring people, as well as not thinking) Don't you apologize for having a tendency to ramble! Your background was interesting, and we need to hear more personal accounts from people...ramble on! You've mentioned episodes. My attacks came in stages. After going through one stage for several days to a week, then another stage took over, and so on and so forth. I'd had about eight or ten maybe. I mean, ten stages, or phases, with my own body, during a two month period. The varmits were doing way more than just ten things.
|
|
|
Post by Belle on Apr 2, 2005 0:01:20 GMT -5
::)Hey Hon! So glad you've found this site! We been battling this for going on 6 years. I've read just about every entry by everyone and as a whole this is a great bunch of folk. Most of their suggestions are right on the mark and usually thoroughly researched. On a personal note, early on before we came to believe this was contagious I did all the nursing for my husband. I inadvertently got a topical aspect of this mess on my scalp. I tried really hard to clear it up but my very long hair made it almost impossible to make much of an impact. My husband has to be completely shaven to relieve his symptoms and suggested I do the same. I agonized but knew it was the right thing to do! I quickly looked just like a chemo patient! Unsure of people's responses I was surprised to find people seemed to treat me with more kindness and gentleness. My husband also said I had a very sexy head! My friends said it was almost attractive! When it started to grow back I also had alot of compliments by men and women! Weird, huh! Our four year old also had to be bald so we could all look alike! Glad the hair's back but it was an experience I think every woman should experience. Enlightening! Belle's bald beenie!
|
|
|
Post by debbie on Apr 6, 2005 8:11:07 GMT -5
Hi Bananny & welcome (and to all I have not welcomed yet, a big hi to you guys to.)
Nice of you to join in & tell us your story. I read some similarities I relate to.... Although with me it was after staying in a caravan park & sleeping on a fold down lounge, both hubby & I, (after turning the lights out) were bitten by hundreds of somethings.... When we turned the light on we saw nothing... I remember the lady who owns the park apologised, they were so busy & the last tenant was late leaving, that she had not thoroughly cleaned the place... Although it looked clean I should have thought to flip the lounge over or beat it or something, but back then I was not paranoid like I am today.... But like you it was months later things really started to get intense, lumps & bumps, itchies & mainly problems with the scalp, eyes & face... I relate to the sand like granules you refer to and also the face that there seems to be a microscopic glitter to them at times. Lots of fibers in the air, which I feel come from me at times... When my eyes are bad & I can't stop wiping the corners trying to drag these little blighters out (which feel like they are on fine cobwebs), if I do drag one out it seems to bite, nothing looks alive, they just feel like a tiny salt granule but they bloodywell bite... When I shower, the heat must activate them at times & I will come out & have a few bite marks on my chest etc.
I see you have tried to work it all out rationally, but obviously are still going through the problem, same here & have been since 1998... I think I probably would have lost my hair by now, if it were not for the vinegar rinses & other hints & tips I picked up from fellow sufferers...
You say the Grisolven (sp) did nothing yet someone on another thread swears by it. So I suppose what works for some may not work for others & there is the possibility we are not all going through Morgellons... I still today wonder myself.... But reading your story, I felt you were similar to me & then you went on to say that you found a doctor who confirmed you have Morgellons.... Keep us informed on what is working for you.... & best of luck, hope releif comes quick... In the meantime as there seems to be no knowledgeable Morgellons doctors in Australia, I'll keep working on the immunity....
And btw you were never rambling & thanks for your input... the more input the more others can relate....
take care.......
|
|
|
Post by debbie on Apr 6, 2005 8:13:59 GMT -5
ps...
where I mentioned that things intensified, itching, lumps bumps etc.... add to that, strange flat freckle things that I was questioning at the time....
|
|
|
Post by Patti on Apr 6, 2005 9:42:29 GMT -5
Welcome Bannanny.....love your name!
I'm so glad you decided to share your story with us. I know that many silent readers out there prefer to be silent and that's okay too.....It takes a long time to read everything here and many times one doesn't have the time or energy to post. We are just happy that we can be of some help and comfort to whomever visits here, whether they post or not.
I wish you continued success with your doctor....please keep us informed when time allows, and thanks again for sharing. Good luck!
Hugs, Patti
|
|
|
Post by adapted on Apr 6, 2005 15:16:42 GMT -5
Y'all, this illness caused me to lose all me freckles! (Freckles that I'd had forever.) I had thought that I'd been the only one to do that, so far, until I read that story from the Florida news article, that was posted recently. I had a couple of weird little skin incidents last night, in one spot. (It seemed as though I had a green string attached to a little lump of WV coal! ;D) These weird little things just happen from time to time, but as long as they all don't gang up against me and and try getting all weird on me all together at one time again, I'm fine. ;D (Naw, that won't ever happen again.) Good luck to everybody!
|
|
|
Post by bannanny on Apr 16, 2005 10:12:38 GMT -5
Hi to all ...... and hope y'all had a good night! I'm having a really rough time right now. It's driving me crazy this thing. I'm actually watching these suckers popping off all over me and my computer desk, which is beginning to look like it has furniture leprosy! It's literally taking over my entire house, and it's really taking on a painful course. It feels like little microscopic jumping beans hitting me really hard in the face, arms, legs, feet....ok, pretty much the whole bod. How can something so damn small be so hard to kill....oh here come the floating fibers, ahhhhhhhhhgggggg!! I do believe I'm drawing closer and closer to losing it. I don't understand sometimes why He's not there, but if Jesus had to suffer, then I guess I can too. I sure could use some strength right now tho. Been in bed for 2 weeks with walking pneumonia, I have fibromyalgia, and a spinal disease as well, so I'm feeling pretty down right now. By the way guys, the Dr. I saw who said this was Morgellons, is waiting for research funding, and hasn't been able to do anything for me yet. Wish I could share some better news than that with you, but I can't. And Debbie, I get the cobwebs too....constantly. Yours does sound so much like mine...I question the Morgellons thing myself sometimes, but I guess there's just different variations of it. It kills me that my poor dogs have this now....they're starting to cry when this gets in it's active mode, and it's hurting my heart so much. There's just got to be a way to destroy this stuff. I'm gonna go figure out something new to try that will do just that. My thoughts and prayers are always with you all....thanks for listening. Luv ya's.
|
|
|
Post by Patti on Apr 16, 2005 12:08:13 GMT -5
Bananny, I'm so sorry your doctor visit didn't produce more info but hopefully he/she will have answers for you soon. Wish I could give you a big hug right now, I am a hugger and sometimes that's enough with no words spoken at all....just a gesture that says "I understand and I care", which I do! Just hang on and keep the faith....the process is evolving as we speak and we just have to pray that somebody, somewhere will find the answers soon. Debbie, I missed this before but I also have the freckle-like things, everywhere! Most of the Morgellonites have them and I am not sure if it's old lesions or the white scabs that then turn brown. But many are right next to regular freckles and clearly they are not the same thing. Many of us are "trying" to write books on this but it's so hard with the continual cognitive impairment and brain fog, not to mention unexpected happenings that also tend to halt the process. I'm thinking we should bypass the book for now and find us a good screenwriter....anybody know of one? I bet they could get it sold....sure would beat a lot of the science fiction movies that have come out lately.
|
|
|
Post by adapted on Apr 16, 2005 13:50:43 GMT -5
Oh, Bannanny. It makes me so sad to read what you've written. Try taking a multivitamin and some selenium, if you have any way of getting some, and force yourself to drink lots of water. We may all be different, but I had to get rid of my illness by attacking it from the inside. Somehow, my dog got over it after three weeks, but I may have very well started him on some dog vitamins that I'd had on hand. I probably did, but it's sometimes difficult for me to recall certain periods of time from back then. I know you're pretty whipped right now, and how dreadful that your doggies are going through it too. Bless your heart, and theirs as well. If you have a Bible, try reading the book of Job. It helped me when I was real, real bad. It sounds sort of like you're in a stage of this, where if you could muster up the strength from somewhere way deep down inside of yourself, and somehow get yourself to flush it out through sweating, that you may be able to. I was able to do that, even though it was a difficult and miserable experience. I don't know whether it would apply to you, or not, but getting healthier from the inside, and flushing it all out, got me over it. I have you in my prayers, sweetie. Stay strong in your spirit. P.S. I almost forgot, vitamins A & D, and E helped me too. They're real important for skin.
|
|
|
Post by bannanny on Apr 27, 2005 3:41:07 GMT -5
I gotta say....you guys are really special people, and it sure makes me feel better to read your responses and posts. God bless you all! I went to the dr. today and he's referred me to a dermatologist I'll be seeing on Thursday. I now have hard lumps forming on my head and neck. This is something new, and a little painful.....but what isn't, eh? I'll let you know what comes of this, and thanks again just for being you!
|
|
|
Post by Lisa on Apr 27, 2005 10:34:36 GMT -5
Bannanny, I'm so glad you found us. I'll never forget the first time I found these folks at the old board years ago. It was validation that what I was experiencing was real. I have the hard lumps on my head and on the back of my neck too. I'm anxious to hear how your appointment went. The new doctor better have treated you right!
|
|
|
Post by skytroll on Apr 27, 2005 12:13:00 GMT -5
Bannanny, Thank you for sharing with us. We love you dear. Sometimes Benardryl helps. I used to take this at the beginning of my ailments 14 years ago. Sometimes this stops the itching. Non-greasy lotions help if your skin is dry. I am trying to remember the beginning of mine in 1991 and what I did at first. Benardryl, Vicks, drawing salve, tea tree oil, clotrimazole, a fungus cream, Mouthwash can clean the areas of lesions, but, sting at first. Keep posting to the board. We support each other out here. Every day is a new day and we will make it. The spirit lives and knows. There will be a reckoning, I'm sure. Think of that brand new earth and the lovely rainforest. Love, skytroll
|
|
|
Post by bannanny on Jun 23, 2005 21:26:56 GMT -5
I just wanted to come back to this post to say thank you all so much for being here....all my new friends who I care so deeply about. It does seem I'm going thru one of the worst yet times of this disease, and I really just don't know what to do right now. I just want to stay in bed and possibly sleep so as I don't feel any of what is going on. Don't want to deal with it anymore, but you guys definitely help me to keep on hangin on.....thanks, I love you.
|
|
|
Post by JLR on Jun 27, 2005 16:08:05 GMT -5
Please feel free to "ramble on" I believe it helps me/us by finding a common ground/bond and experinces as well as helping you let out what you have inside. It may also serve as a journal of experinces which later may pin point ways of transmission and various cures.
|
|