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Post by JaneD on Nov 3, 2005 9:19:22 GMT -5
Just want to vent. I am sooo tired of this. I just cannot believe that doctors do not see how this stuff is contagious. I know it is because I see the symptoms in the people that I know. I am afraid to socialize. I am afraid to have ANYONE walk into my house. Sometimes, on the other hand, I hope that more and more people will get this so that we can all be validated and find a cure. What a catch 22. I wonder what the REAL number of people who have acquired this is. In the beginning of this, I thought that some of the hypothesis and conspiracy theories on these boards were nuts. Now, however, I feel that our govt. does know about this. How can it be that they do not hear us? Thank you all for letting me vent. JaneD
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Post by Jane D on Nov 3, 2005 20:02:58 GMT -5
Just wanted to let people know that this JaneD is not me, the one from Ontario, Canada. I haven't posted for awhile -been checking out Salt and C which is helping mouth symptoms. However, I have been involved with first NUSPA and then this board, almost from the beginning. I have a definite diagnosis of Lyme, btw and am not afraid to have people over to my house. Deep kissing is another matter... From, The original Jane D.
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Post by flutterby on Nov 3, 2005 20:41:01 GMT -5
Dear Jane D, I totally understand how you feel, I feel. I've had Morgellons for more than 3 years, going on 4 years. Years of going from Dr to Dr, I was still diagnosed as DOP. My husband is not infected with Morgellons. His symptoms began about 6 months ago. My 2 dogs (Shelties) have been infected by me, as well. The dogs were infected before my husband, but I had no idea why I was sick until just a couple of months ago. The time I registered on this site. Vent all you require to feel better, Jane. We have had the same experiences with doctors and understand what this disease is doing to our bodies & support each other. Welcome, God Bless, Flutterny
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Post by spank me on Nov 4, 2005 3:20:46 GMT -5
I think it's really only contagious if you already have immune system problems. I am in regular contact with people who have not shown any signs of the disease.
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Post by Spec on Nov 4, 2005 4:21:38 GMT -5
Well let us consider following the money.
They introduce a product, then it takes awhile for it to catch on, then there is suddenly a great demand and everybody wants one and the price is sky high, and man the money that is being made.
IN this case, they can't build the demand, it needs to keep moving through the public and how many years did you have this before you realized how very sick you are?
If many are like me, I bluffed for quite some time, years, that it didn't bother me, that I wasn't gonna let it bother me, that, yes, I had these awful sores all over, i could handle it. I always was "daddy's little soldier" growing up.
Now though, I know the "depression" wasn't caused by hereditary patterns in the family, it was Lyme disease. And I know that my body is far sicker and debilihitated and that I can't do many things physically that I use to. Concentration has been gone much longer.
Soooo, Lately, I am telling everybody, the show is over, I am not pretending any more for anyone.
It takes awhile for people to realize how very sick they are, and how much they would pay to be well again. If "someone" out there has a sure fire silver bullet that will knock if out, when do they want to release it to us? When the demand is in the mere thousands of people, or when millions are going stark raving mad and will be willing to spend any amount to get well?
When will that money be made?
That is when the company with the cure releases the med, and under patent for 20 years, so no other company can copycat it.
Sp. When will the cure be finally made available to the public?
Sorry, this is bad news, huh?
spec
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Post by Patti on Nov 4, 2005 6:40:52 GMT -5
I'm with you there Spec. I think that many are infected but just aren't showing blatant signs of it yet. It seems to have a way of sneaking up on a person......slowly a symptom here, another one there, until one day you can't explain away what is happening any longer. With some people it might take months or even years but I bet it will eventually rear it's ugly head.
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Post by skinmystic on Nov 4, 2005 19:25:54 GMT -5
My experience is that nobody I've been in contact with or lived with has contracted this. That's a fair number of people by now. In fact, I get worse in other peoples' homes, people who have no symptoms whatsoever. I've concluded it's more likely people will infect ME than the other way around.
However, I did have a friend work for me in my house and this friend is somewhat immune challenged, to a milder degree than myself. She did say that she experienced a couple of unusual 'bites' around her ankles a couple times after being at my house. But it never blew up for her.
This bug seems to be accumulating in the environment. Perhaps it's just a matter of time until average people develop the symptoms. It was months before it became full-blown for me.
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Post by apefist on Nov 4, 2005 20:43:07 GMT -5
I swear on my left nut (the good one) that it is related to a deficiency in our immune systems. Everyone I've been around ISN'T sick with it, except for my lover. We used drugs rather liberally a year or two ago and had to get clean. Once clean, we found out we had the hitchhikers from hell.
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Post by ebgbsad on Nov 5, 2005 3:25:40 GMT -5
I'm sorry to say, but I am not crazy and have seen people around me and my family get this and get it fast. It kills me to see it, but I do. I'm glad that other's do not experience this. But I feel I should let U know mine. It has been very contagious, why it took my husband longer then a neighber for instint,I don't know. But it has infected many people around us. I guess I don't know for sure that I, or we did it to them. I just know for sure that they have it and do not realize what it is yet. It is just a matter of time IMO that a person who knows me finds this site and will reconize my name. I have told close friends and they have it. Coming out and saying they do and me saying why don't U understand why U r sick? This has never been talked about. It's like I poured my heart out to them, scared for them, and they don't even remember.
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cb
Full Member
Posts: 145
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Post by cb on Nov 5, 2005 11:11:25 GMT -5
if this was so contagious then the whole world would have this . god loves us candy
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Post by SueL on Nov 5, 2005 11:55:28 GMT -5
My god daughter and twin grand babies got the rash, dr said scabies. The rash did clear after treatment but I so fear for the future. I know all of my children have this as when they visit I see it in the hair when I clean the drain. My oldest who's a very healthy person, see eats so well and exercises, she's in nursing and takes very good care of herself. It's in her hair and she denies it's there. My middle daughter came home a few months ago to get back on her feet (divorce) , scares the you know what out of me (her living in this house of fibers) she gets little bumps on her arms and tells me it's nothing. And my baby girl (28, ) who"s the administrator of the privet school for Disney employees children (very high stress job) just got a so called case of scabies this year two weeks after a visit. She tells me, mom if I had your disease it would have never gone away with treatment. And you all know my baby, my Josh 22, has to deal with brain cancer and this horror. After a chemo treatment this year he stopped feeling the disease, itching, stinging stopped. I clean the fibers off him day and night. They dig into his flesh leaving gapping holes. They were first diagnosed as bed sores until he started getting them all over his legs and belly, he can't lay on his belly, no pressure there. So the wound care nursing staff knows this is something bad and are using Silver cream and this black Silver packing in his wounds. This disease is a horror, I HATE IT. Please someone out there, please help us. If you are a scientist, doctor, anyone looking at this site wondering if we are DOP. Please please help us. I'm pleading. This is so very real, please. My child, my children, my friends that suffer, please. Love and good health............SueL
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Post by SueL on Nov 5, 2005 12:00:03 GMT -5
JaneD this is the place to vent. I'm so sorry you are hurting, I hugging you now friend. We will get our answers, miracles do happen................Love SueL
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Post by slinker on Nov 5, 2005 12:19:40 GMT -5
If those people all got it so fast, they probably have some sort of autoimmune deficiency. It's not so hard to understand or consider. This thing looks for an opening inside. If your immune system is healthy, it can't get in. Period. If it is compromised, like any other diease, it will sink in and bite.
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Post by SueL on Nov 5, 2005 13:36:15 GMT -5
Slinker I sometimes think that I passed on something to my children when I was pregnant.
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Post by Mari on Nov 5, 2005 15:23:37 GMT -5
In my experience, I have been around many people and stayed at their homes before I knew what this was and the only two people I know who have this is my son and I and we both lived in the same place at the time. He has lived with his dad for a year and a half, been around many people and no one has gotten this from him, not even his girlfriend or ex girlfriend. I'm not convinced there is something wrong with your immune system as we were both healthy when we got this.
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Post by slinker on Nov 5, 2005 16:25:18 GMT -5
But do you know for sure? Had you ever been sick during the 12 preceding months? The conventional wisdom on this is that it can take anywhere from a month to 6 months to show symptoms, so the immune system deficinecy would have begun sometime before that. I usually think your health for the year prior to coming down with this" is a good indicator. Plus if you take care of yourself, even with a deficiency, you could have not have gotten sick. Or, an immune deficiency also doesn't mean AIDS, if you have allergies all the time, that could be a virus you can't get rid of because of a deficiency. There are all sorts of manifestations.
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