|
Post by JLR on Jun 8, 2005 3:08:25 GMT -5
After months of wondering whats going on with my body I've come to the conclusion that what everyone on this board is experiencing may very well be what has been happening to myself. I don't know how all this started but I do know it all happend after a unusual rainy season here in a lower desert area of southern california.
At first I thought I was infested with lice or scabies, after a few doctor visits and lice treatments I still experienced the crawling sensations plus finding white specs, pulp like things and what I thought was sand on various parts of my body.
Things were pretty bad in the beginning, I felt this crawling and stinging sensation at various times of the day and could tell that areas I spent the most time in were infested as well. 3 doctor visits and 1 dermatologist later concluded that I was experiencing childhood eczema flare ups, which sounded reasonable at the time I had searched for any answer to whats plagued me, but never in my childhood had I experienced this crawling/itching during my elbow/back of knee rashes doctors called eczema.
It was to the point where these so called professionals would yell at me as if I were wasting their time. My last attempt was with a respected dermatologist in this valley who assured me there was nothing wrong with me other than an eczema/allergy reaction. He proved this by pulling my arm out, reaching into his pocket for his car keys and scraping my arm with them to show me that I had a high histamine count. After a long embarresing shout out loud leacture others could clearly hear though the walls and shoulder shake down on how I was imagining all of this, I no longer seeked medical attention for fear of being put on psychotics, which he also spoke of.
So now its just me, here at home fighting this; what seems like and endless battle with whatevers on and around me. I had experienced most of these symptoms before even reading anything about what has been labeled as Morgellons, never hearing anything about it up until now.
I was really scared at first, mainly because no one would believe me and they eventually tired of my whole schpeel on how something was wrong with me, so now it keep it to myself and watch as others slowly itch and scratch, making me wonder if I am spreading this around or if something bigger is happening. Even my boss at work is constantly scratching the back of his head and brushing things off his arms and legs, I've spoken to him about what I'm experiencing but he too says that he has itchy dry skin and that I'm possibly in some psychosamatic state.
Anyways, I've tried various things and have read countless websites with others advice on what they are doing to rid themselves of this. Here is what I've tried...
Permitherin 1% - no help Lindane from mexico - no help makes it sting more Natural Ginesis Enzyme Cleaner - little to no help RID Spray in home - no help
Now through reading and expermentation I'm...
Eating picked garlic cloves - feel things jumping off me.
Eat less carbs - dont know why really, just read something someone has tried.
No sugar or sugar subs - no stinging if i stay clear from what I crave most.
Vitimin A,C,E + Antioxidant and workout 5x's a week. Sweat as much as possible and drink lots of water.
Apply eczema cream prescription to any pimple like sores that dont seem to go away. (memetasone furoate)
MSM pills - read something about MSM once.
Green Tea Extract Pills - I like green tea.
Alternate shower with Fungasoap and Aveeno body wash. I believe the fungasoap has helped.
Covered my bed in a zippered vynil bed wrap and wipe it down everynight. Use linens once and wash.
Wear clothes once and wash everything with Ammonia and detergent, sometimes Borax.
Spray and wipe everything down with Ammonia/water mix. Seems to work and xheaper than enzyme cleaners.
Sleep with a fan on in a cool tempertured room
Vaccuum, Vaccuum, Vaccuum.
Steam cleaned my carpets.
Buzzed off my hair and brush it daily with a bristle brush over shower stall, rinse shower and spray ammonia mixture. (my place smells like ammonia, but the smells goes away after awhile) Buzzing my hair off has helped.
Probably alot more I've forgotten but you get the jist, pretty much has consumed my life as I'm sure it has yours.
But I must admit things seem to be getting better or maybe I'm just in a differnt stage of whatevers on me. Seems like everytime I think things were getting better it all just starts to happen again.
The feeling of things falling from my hair and rolling down my skin.
The fluttering feeling and crawling sensation.
The white/black specks I find where ever I feel stinging or crawling.
Occasional white pulp like things.
The wiggling in my my eyelids and now lips
The pimples on back of my head, and sometimes red pores on thighs. I try not to scratch and rub my skin when itching instead.
My now fear of cotton... lol (long story)
So yea, I'm sure you've heard all this before, and I'm kinda of tired of retelling the tale myself. But at least now I know that I'm not crazy and hopefully can find some kind of support on this forum; which I think is an excellent idea.
A few things I think we should do as a group would be to point out things that do not work; like poisoning your body with chemicals or falling for the numerous scams that people are claiming to have worked for them for a nice sum. I honestly think if someone really suffered from this and found a cure they would gladly help without trying to make a buck. A survey with background info, and possibly a food journal might help to compare notes and rule out what works, and possibly come to some conclusion through the process of elimination, etc.
Just a few thoughts... It's late and I should get some sleep. Thanks for your time and sorry for any spelling errors or run-on sentences.
Goodnight from Socal, JLR
|
|
faith
New Member
Posts: 0
|
Post by faith on Jun 8, 2005 9:51:25 GMT -5
JLR, I am so glad you posted this morning. My story is like yours. I have delt with this illness for almost two years. I had no idea this message board existed until this year. I wish I would have been able to read these stories at the beginning of my illness. I actually started to doubt my own sanity, during the process of various doctors and the other symptoms you mention...which I've experienced all during the initial six to eight months.
I too, started off putting all sorts of poison on my body. I actually became determined to kill these things...it was as if I was at war and protecting my family from invisible mites (I could see them, my other family members couldn't). I was mixing all sorts of pest product. At one point....(I am soooo embarrassed to admit this....), I was wearing a dog flea and tick collar around each ankle, over my socks. I really couldn't figure out where they were coming from and their original source. I was dressed for battle all the time. I've admitted the dog collar, you can just imagine what dressed for battle was......! In my desperate and panic state of being eaten alive, deep stinging sensations that stopped me in my tracks...the crawling especially around my temples, eyes and nose and total obsession of debris jumping off me all the time.....I am lucky I didn't get locked up somewhere. I know, from the bottom of my soul this is !00% NOT A MENTAL CONDITION. However, for me, it became one as a result of needing help and the way the medical field treated me. So much damage they did.....their negative input to my family made matters even worse. I am not feeling sorry for myself anymore, but if anyone out there is experiencing the possibility of losing their support system because doctors, please read all the posts on this site and share them with your family.
It was critical for my recovery to have some type of support system.
I would love to compare solutions, and what does not work. I am 89% better, and have been for 9 months. I still continue to do what works for me, so I never have to get as bad as I was. I know I am not well, but I am nothing like before.
Thanks again for posting.
|
|
|
Post by bb on Jun 8, 2005 16:01:41 GMT -5
Hi Guys, I usually post on the General Board because there is more traffic. I just wanted to say that putting castor oil on my skin has been the number one thing to kill them. I rub and rub, and get them off one by one. After a few days the rashes will go away. I know it is very sticky but it does absorb. When you have time to stay at home douse yourself in it and RUB.
Also, take salt baths, hot tub soaks, and infra-red sauna sessions. These three things have gotten many off of me. I think the sauna is breaking their cycle. Anyone suffering from Morgellons who lives in central Texas is welcomed to come get in my sauna!
Wash your pillows also on gentle cycle, but HOT water at least once a week.
If you are interested go to the General Board and read my letter to Popular Mechanics.
God Bless You All! Hang in there!
|
|
|
Post by spiderlegs on Jun 10, 2005 0:33:55 GMT -5
Welcome to the funnyfarm! And I say this knowing we've all FELT nutty at some point...like we're stars of our own personalized TWILIGHT ZONE episode. ;D
|
|
|
Post by JLR on Jun 10, 2005 1:40:29 GMT -5
Thanks for the welcomes, even though I still feel these things it feels much better knowing I'm not alone.
|
|
|
Post by Orion*** on Jun 13, 2005 1:28:00 GMT -5
JLR You sound to me like you have a pretty good program. Some of the symptoms are hard for me to relate to--the crawlie feeling that I feel I assume is the fiber worm emerging from under my skin--I have never seen any flying "wispies" Every thing that I observe is much too small to be seen with other than a 20X or 30X scope or glass. The black worms (fibers) , the clear fibers on the surface of my skin--the black specks that give birth to the black or colored worms or fibers. I can always dig all of them from beneath my finger nails---black worms and black specks from my ears,nose, and ears. I can rub my thy--upper leg upper--with oregano-or camphophinique--and sit here with a GOOD magnifying glass and watch little black specks crawle out to the surface of my skin... I also suspect that the so called spider veins are related to the parasite. The scabs on an injurie will always have the white fibers growing out of them.. My sores heal quickly and I have no open drainig leasions, Now , the horney wart like growths on the back of my neck I suspect as being nests. The bruses on my forearms has responded to vitamin K therapy... Ain't this a great disease folks? More fun, Hu? These suckers really love toe and finger nails. Seem to be very compatable with fungis... C_YA
|
|
faith
New Member
Posts: 0
|
Post by faith on Jun 13, 2005 13:34:15 GMT -5
I have read so many different responses on the subject of the bite/sting/crawl feelings as far as the duration. Mine lasted a whole 6 months of non-stop symptoms on a scale of real bad-morbid. Then I was able to shed those sensations until recently. It is well over a year later. I actually thought I may have been over that part. I am so sad.
|
|
|
Post by spiderlegs on Jun 14, 2005 2:57:45 GMT -5
I see the flying things too, or rather I perceive them more as hopping or propelling than flying as I've not seen anything that looks like a wing in any of the samples we've studied. And let's just say that if it came out of our bodies more or less in tact, it got stuck on a slide. The "leapers" as I call them, are always white, and make me think they are launching eggs everywhere. It is at this point that I have to question whether I'm really seeing certain things or having...um...the "D" word.
Early on in our epic struggle with this thing, I could have sworn there were so many things popping off me, it was like popcorn, and I really, really doubt it at this point except that it SEEMED real enough, and by that, I mean, it didn't seem out of the ordinary, considering I had bugs squirming around in my sinuses at that point, so my wheels had pretty much already been taken out from under me.
That was really taxing and I'm afraid it's happening again. If that's the case, for the first time in my life I've begun to have what I would call an axiety attack. The first go round, I didn't know what to expect and it was horrible. But now, I am aware of how horrible it was last time, and with symptoms becoming more similar, I'm freaking out. I don't feel like I can go through this part again: the constant taste of bug and blood in my mouth, the squirming in my sinuses and all through out my skin, blowing my nose so much that it bleeds regularly giving the bugs up in there more nourishment so they get pretty big and come out with some measure of regularity.
And last time, the chronic fatigue wasn't a factor, and this time, it's the dominant force in my life: sleeeep.
Anyway, if I don't post for a few days, you'll know why. Better to disappear and let them wonder if I've lost my mind than to rage here in every post and confirm I'm nuts. It's just going to suck, I know this, so I need to pony up and take it so I can get on with everything else.
|
|
|
Post by JLR on Jun 14, 2005 15:22:27 GMT -5
I've been feeling a little better, but I do know that there is a cycle so who knows when it will all just rush back. I believe cleaning and spraying a water/ammonia mixture, its helping, I've been finding the same black angular specs on my bed that I've been easily tweezing off my chest and arms, I still get the occasional white pulp like things that burn or bite, kinda feels like it would be a chemical burn for some reason. I too have a few random red spider veins in my inner thighs and ankles... really squiggly ones. I'm convinced that those are note spider veins as well. Things feel like their getting better, but I've noticed when I come into work and get anywhere near my boss, I'll get that crawling sensation a few minutes after he's walks away. He is always scratching and I've also noticed people who walk into his office will do the same. I've warned him but he's stubborn and will not listen... so screw it. I need to get outta this place.
On a lighter note, I'm getting used to not having sugar. Maybe I've finally gotten over it's addiction. lol... It's also helping to define my body by losing weight while working out. So I figure if I keep it up at least I'll look good... bugs and all.
JLR
|
|
|
Post by JLR on Jun 16, 2005 23:55:41 GMT -5
So today, it started again. Whats weird is that this morning my place of employment had a pest control company spraying bright an early this morning. They just had the place sprayed late last month. The wiggling started around lunch time, I had to crouch under my desk because of an earthquake, soon after the crawling sensations began. I tried to pay it no mind thinking my head was playing games with me, but sure enough by the time I got home the crawling became occasional stings. I decided to check my vynil covered bed while the sun was out and shining through my window, I also used a bright outdoor camping light and found that these black specs I've been wiping off my bed are also clustered in different spots underneath the vynil. The vynils a bit translucent but only with the light shinging directly at it. Checking other areas of my bed I rad across two moving skin colored objects, they were deffinetly mites of some sort and were not to fond of the light being shined on them. I caught these things with scotch tape and placed them in a plastic baggie. I look around for others but only found a few similar looking things that would not move. Looks like I'm gonna have to trash my bed and start from square one again. I so freaked out when I saw the two moving things, these past few days have been feeling so much better, I thought I was getting over whatever this is. Apparently not.
I've been thinking back before all this began trying to find a starting point and came up with a few possobilities....
1. Around 4 years ago I used to work at a different job, this man who would sit next to my work station would always scratch and itch, he would bleed from scratching so much. Myself and another worker, who sat on the opposit side of him; complained of feeling things jumping on us. This man was sent various times home and even to the doctor without any results. So they eventually sat him elsewhere, and it didnt seem to bother anyone else other than us two. Weird thing is it was only when I was around him that I would feel this, once home I was fine.
2. It recently rained quite a bit out here, this is a southern california desert area and we don't get much rain out here. So that was really odd. Its been a real blooming, wet and windy spring season.
3. Before all this started I had a last minute biopsy with my primary doctor. He took a small dark mole out of my back, right there in his office on the spot. He then stuck some childs crayon looking band aid on it, but since the scar has been itchy and a bit raised.
4. When I started feeling things biting me in my apartment, I complained to the apartment manager, who coincedently lives next door to me. (old apartment complex) This is after I shampooed my carpets, got rid of a few things I felt were infested and pretty spot cleaned my place, it was pretty clean to begin with. In order to get anything done around here I had to call the owner, who then gave me permission to have a pest control place spray my apartment and the managers plus surrounding vacinity. These people came and sprayed but the apartment manager did not let them spray her place. Turns out this lady lives in a pig stye, someonone ratted her out and the owner made her clean her place out. She had to rent a large dumpters canister and I swear to you, filled it with large black hefty bags... Along with furniture and other stuff. She had a few guys help her out.... and this was a pretty big canister and to top it off the canister was on the opposite side of my apartment, me being trapped between her apartment and the canister. I've confronted her many times about what I've been experiencing but she denies any type of feelings herself, even is she hasent been staying at her place for over a few months now. Which I find really odd, even now that her place has been cleaned out.
5. I share a single washer and dryer with 7 apartments here in this complex. Everyone here has pets expect for myself and the apartment manager. Well, I do have a fish, but hes cool and doesnt need any type of laundering. One neighbor has two cats and a dog, another has one two have cats and the last two have 1 dog each. They know whats going on with me and we have talked occasionaly about the apartment manager (which they all seem to blame) but I really don't know since I have on occasion found pet hair in the washing machine. If that was the case then I think the permitherin would have worked long ago. No ones confessed to anything, but something seems suspiciuos.
6. At work my boss is constantly scratching, but I think I might have been feeling this before he was. I warned him but he I think maybe he thinks I'm trying to get out of working. lol... good luck to him.
7. My parents live on a ranch surrounded my vegetation and citrus. I've heard of this nematode theory on one of them conspiracy websites and often wonder if anyone of the local farmers are messing with alternative pesticides.
8. Since I moved here I've noticed that my faucet water constantly plugs up my shower head with what I think are calcium deposits. I also noticed that whenever I poured a glass of drinking water, looking into the glass before the last drink I would see white things at the bottom of the glass. I tried cleaning out my ice trays, and eventually bought a water purifier that stopped that all together. I also read on the same website about some sort of parasitic water contamination theory.
9. Being an old building, I checked around for mold, opening up my Air Conditioner vent I found that my filter was a crappy fiberglass spun one that didnt do much for trapping dust. I replaced the filter a few times now and have found that my place is practically dustless now. I was having problems constatly having to dust in the past year and a half. (I'm going on two years in this apartment which has a cool 1960 architecture style to it, flows nicely... I like it) Anyways, I also found mold or whatever it is growing on the boards up into the the celing where the vents are. I heavely sprayed some mildew remover and ammonia on it and hope it gows away, but I seriously doubt that has anything to do with what I'm feeling since seeing those things crawl on my bed.
Anyone remember where this all started for them? Maybe we can make some sort of connection. If I think of any more I'll add to them, would be nice if this board had a edit function.
Thanks for reading and hope we get answers soon. JLR
|
|
|
Post by JLR on Jun 22, 2005 11:55:54 GMT -5
One of my neighbors told me yesterday that the apartment manager next door who has been away for more than 3 months was recently spotted staying at a nearby hotel. This after she has been telling us all that she has been house sitting for friends all this time. Also to no surprise, I ran into her during my lunch break, she was having a new mattress delivered and her old mattress was being hauled away, this thing looked pretty bad... it was one of those old mattresses with colored lines woven through it from the 70's, and way dirty... I also noticed that the new bed was placed in the living room area, far from her bedroom. I saw this because her blinds were open (for once, she never opens her blinds up until she had the place cleaned out) We have the same apartment layout and are the only two in the complex that are ajoining apartments. She didnt stay at her place last night even with the new bed. I'm totally convinced that this lady has something to do with whats going on with me, regardless of her claiming it's not so. Ugh! I'm so teed, I should have called the health department long ago, but with all these lies and no help from doctors I decided to tackle on this problem on my own, which seems like its getting better since I've been sleeping on a inflatable mattress in my own livingroom, cleaning with ammonia and taking supplements, but I too feel like I am gonna have to get rid of my almost new expensive plush california king size bed. I can still feel these critters around in my bedroom and walk in closet which happen to be the closest ajoing apartment rooms.
To think this lady would rather lie to me and risk my health then admit there was something going on so we could fix it together at the same time. At least with my complaints to the owner she had to clean her place... or have others empty it out I should say.
I hope this gets better, but I've said that before only to feel it happen all over again, another month and I'm outta there if things don't change. Might even take up legal issues with the owner since this has cause me so much trouble and expenses I should not have to have taken on. But first of all I must say goodbye to my expensive bed and forget about getting another until I'm sure this is dead.
*inflates mattress...
|
|
|
Post by Administration on Jun 22, 2005 22:05:52 GMT -5
Welcome to LymeBusters! No, you are not alone.. you are one of thousands and thousands.., geez, God only knows how many more who havent found us. I know a ton here in my area alone who dont even have internet access, so who knows exactly how many there are. I think the numbers would really shock us all. Plus.. think of how many Drs tried to "DOP" so many and lock them away. I cant even imagine how many are locked up and unable to get to us! ........................ We arent crazy, this really is happening all over the world! .......................... Please feel free to roam thru the site.
Much Love Kerry
|
|
|
Post by Mmeme on Jun 23, 2005 20:54:59 GMT -5
Faith,, I nearly fell off my chair,,,,your post was so funny,,,I felt as if you were describing me with the socks, collars etc etc,,,,even though I never used the collars I can so relate,,,Thanks for the laugh,,,if laughter could do all the healing for me I'd be crawlie free ;D ;D ;D M=my heart thanks u !!
|
|