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Post by Barb for Sister on Jun 1, 2005 10:21:10 GMT -5
To Anyone Who Might Have Info on the Question of Transmission Person-to-Person:
Am inquiring for my sister whom I believe was literally being "eaten alive" by this parasite, and near to losing the battle, when her doctor finally started her on high dose sulpha (sp) - or is it "sulfa", to which she added high-allison (sp)(not sure of spelling on that either) garlic. She recently retraced the history of symptoms, and puts the first indications at 7 years ago! She was, for years, misdiagnosed - including a couple of physicians saying it was delusional - and then the reaction by them to the purplish skin marks as "scratching her skin and causing the injury."
On the medication for several weeks now, she has been seeing large patches and lesions of her skin improve, along with improvement of many of the other symptoms, e.g. foggy-headedness, fatigue, joint aches, puffiness all over the body, bad headaches, and of course the fibers and specks and all that go with it.
Once she started the meds, she said it was as if the stuff was being driven out of her body....NOW the question is,.....as they are "expelled" (be it the parasite espcaping from the presence of the meds, or are killed off and being thrown off by the body), is there a contagion there??? If the things dead and without living "eggs", then no, but she can't tell if they are actually living when coming forth. She has been quite isolated for years since she is concerned about passing it on to others.....but now on meds, the question is about contagion.........
If anyone reading this has some info regarding contagion it would be much appreciated.
There are so many mysteries about this stuff that possibly this question is not answerable yet...... but comments would be welcome. For My Sis
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Post by spiderlegs on Jun 1, 2005 10:51:17 GMT -5
They're probably not expelled. I've seen a dramatic improvement in my own symptoms, too, but I am still being bitten. There are a few people on here who have been parasite-free for a while, but they'll have to speak for themselves. It's all of our end goals though: parasite-free...
Also, I have wondered how contagious I am currently and haven't been given a straight answer. We talked to a friend of a friend who told us as long as there are still open sores, you are contagious. I still have a few, so I have taken that warning seriously. Also, there are projected to be up to 5 stages in its life cycle. So, her contagious factor also depends on which stage the thing is at currently.
Someone please correct me if I'm wrong.
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Post by Roland aka Orion on Jun 1, 2005 21:05:06 GMT -5
To: Barb for sister: Yours is one of the more interesting posts that I have so far read--in that she is responding to the sulfa drugs and garlic. It appears to me that she just might be winning the battle. For gosh sakes keep us informed as to her progress---I for one am very interested in her therapy... perhaps it is of great value to others like myself; As for contagion --I would presume that to be the case until there is more information on the morphology of the organism and the idiology of the disease... These large (bruse like ) marks on her arms--I also have them and have been wondering how common this is amongst morg sufferers..any one else have these? There is a cure, could this be it? Sulfer keeps poping up---garlic is rich in sulpher as is MSM.& DSMO. I'm looking forward to your next post.
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Post by Roland akaOrion on Jun 1, 2005 21:10:10 GMT -5
To: Barb for sister: Yours is one of the more interesting posts that I have so far read--in that she is responding to the sulfa drugs and garlic. It appears to me that she just might be winning the battle. For gosh sakes keep us informed as to her progress---I for one am very interested in her therapy... perhaps it is of great value to others like myself; As for contagion --I would presume that to be the case until there is more information on the morphology of the organism and the idiology of the disease... These large (bruse like ) marks on her arms--I also have them and have been wondering how common this is amongst morg sufferers..any one else have these? There is a cure, could this be it? Sulfer keeps poping up---garlic is rich in sulpher as is MSM.& DSMO. I'm looking forward to your next post. =-=-=-=-=- Here we go again--the board will not let me post under my registered name--Orion
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faith
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Post by faith on Jun 2, 2005 0:44:55 GMT -5
My experience has been, while you itch and can actually feel the parasites miting down or inside you most likely your can spead this stuff. I think it speads quickly in close quarters, like family or room mates, a casual walk into a store, doctors office, pharmacy, places like that, I think most people's immune system has no trouble.
Daily exposure over a period of time from someone infected probably wears down the immune system of a healthy person, which soon starts to show symptoms. If someone is immune comprimised and gets exposed, it happens much quicker.
My parents claim they have no symptoms, I stayed with them for a while during the worse part of the illness. I think they do...but they think.....that I think....everyone has it. Although, there may be a slice of truth to that...I have not come to that conclusion (yet).
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Post by sumtingwong on Jun 2, 2005 1:38:50 GMT -5
;Dlol my mother thinks i think same thing I sh!t you not i have had her look me right in the eye and tell mell >:(I HAVENT GOT WHAT YOU GOT and im stareing right at theses little worm like thing haveing a party in one of her nostrils and and right in the corner of her eye i can tell the difference between sleepy bugs eye matter we all sometimes get and trust me this is not the case ive been messing with this since early nov last year i got attacked by fleaswhich i can deal with .i bombed house etc etc .everything seemed fine 2 weeks later i awoke with a red ring arond my bellie button and theses things (NOT FLEAS) useing my red ringed bellie button as a swiming pool i been through same as most here at first doc says im 90% sure you got scabies he says from about 5 ft acrooss room ive seen 2 internal med docs 3 or 4 reg and a dermatologist . my moms drem big mistake who says what she got in nose is little staff infection BS funny thing is mom ass aquired new AKA sun spots latelyas well as the large rail road track looking bags above and under the eyes and the little brown 3 dot thing which she didnt have before .Sigh like she been brain washed sometimes
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Audrey
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Post by Audrey on Jun 5, 2005 10:45:18 GMT -5
Faith, I believe what you said if you are around a person alot, you are most likely to get it.
I had my sister and her hubby staying here for four months. He was very ill(since passed away) and he was always itching, doctors said it was nerves even tho he clearly had some bites. My sister is always itching and had a rash on her stomach about five months ago or more for a long long time. Not sure she still has it.
They were sleeping in my master bedroom in my bed, and when they left I turned the mattress, and washed all well, but the first night I itched all over and felt the spider web feeling on my face. Changed beds, got rid of the mattress, etc., moved into the spar bedroom and had the mattress covered with plastic; but still came down with it
She claimed my brother in law was diagnosed nerves, same as dop if you ask me; and she does not have anything wrong with her. I Have had it for five months now.
Also worried about passing it on to my friends and family. I have no open lesions, and have found that when you do it is good to put liquid bandaid on it. Clears up so fast, and it is not contagious.
God Bless....audrey
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Audrey
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Post by Audrey on Jun 5, 2005 10:47:38 GMT -5
Barb. Glad your sister is being treated. I am located in Florida and I'm trying to find a doctor. Would he be located anywhere in Florida? Thankx for your reply.
Audrey
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faith
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Post by faith on Jun 5, 2005 12:15:53 GMT -5
Audrey, reading your post makes my heart hurt. I am so sorry because you were such a good person to have ill family stay with you, that such a unselfish act of kindness and love. Then to get this stuff as a result makes me mad at this illness, and the doctors who can not help.
I have no authority on this stuff, only real life experience. My comments were only experienced base. I believe, skin to skin contact increases risk and your typical cleaning routines will not rid this stuff during a certain stage of its life cycle. This thing knows how to survive. I have no doubt you got it from them. I am not sure just how contagious this can be.
If you don't mind me asking, how did your brother pass. What all did he have and his symptoms? I think more people have this and are being told they have some other sort of illness and never get proper treatment. I do think this can cause nerve damage, but I think nerve damage is a result of a larger problem. His doctor probably had no idea, very few know anything.
Hang in there!!!
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Post by Ian M on Jun 6, 2005 6:31:53 GMT -5
I have a different experience from what most of you have... in that I thought this thing would be highly contagious, however, seem to have transmitted it to no one that I know of. I have a friend of a friend with the same illness and his experience is just the same as mine. We both agree that no matter how close you get to someone (everyone thus far in my experience), the stuff does not seem to take hold on them. I dont know any of this for sure, however, it is a relief that someone else thinks the same.. i just about drove myself crazy when i first came down with this thing, thinking i was going to infect every person i came in contact with. Like i said, i dont find that to be the case... anyone else?
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faith
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Post by faith on Jun 6, 2005 12:19:15 GMT -5
Ian M : I do agree with you, no one close to me seems to have exactly what I have.
Initially, when I was really bad off, not knowing what I had, I called the ER while in the car on the way there and told them that I have a highly contagious something and please get an area ready where I would not make anyone sick. I am sure you can guess the rest.
No, they gave no consideration to what I told them and gave them even more reason to think I needed the mental ward. Oh well...I really did not want to get anyone else sick and believed from the bottom of my heart that I could.
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Post by gmsscared on Jun 6, 2005 16:44:02 GMT -5
Ian and Faith, I believe that it depends on so many things. Everyone around me has gotten it. It took longer, after they were exposed before I could see the symtoms. Except the children, they show it very quickly and I have to see this happen. I tryed staying in, never leaving the house. Mary talked me out of this as we all know allot more people have this and who's to say they got it from me, even though I feel this way. Audry, how wonderfful u r and understanding. My mom, and family feel that since I've been sick most my life it's just another crazy thing I've come up with. Your support to your sister is probably the most important thing you could do in your life. I would suppose she supports u also. I am so glad u HAVE EACH OTHER. ((((((((((((((HUGS)))))))))))))) (g)
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faith
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Post by faith on Jun 6, 2005 18:54:37 GMT -5
I will clarify. My immediate family all has this illness to different degrees. Our symptoms appear to get more similar as time goes on. However, family and friends who I have spent time with at different times and stages of my illness does not appear to have caught anything from me (the best I can tell).
gmsscared, I am glad to hear Mary felt it was not in your best interest to stay home isolated. I feel I tend to do that. I think I initially was staying home so I would not expose anyone else to this stuff, then I stayed home when I was feeling better for fear I would get it again from where ever. Since I can not say how I got this, its hard to know what to avoid.
So many symptoms and so few answers. There is nothing simple about this disease. If you ponder it (which is a dumb thing to say....everyone who has this ponders all the time...), can you imagine another illness where people describe such torture symptoms. I told my doctors that I felt like a Steven king movie. He said, "how do you think they come up with those idea's?". I decided right then, I would keep this doctor.
Thank you for your posts....it really feels nice to find some others to relate too.
Faith
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Post by spiderlegs on Jun 10, 2005 0:38:52 GMT -5
We've given it unknowingly to my mother-in-law. As soon as we found that out, we've quarantined ourselves. When we DO venture to the grocery store, it's long sleeves and pants. As far as we can tell, we're contageous, we've been contageous since we first showed signs, roughly 5-6 weeks ago, and we'll be contageous until we rid ourselves of them, until someone tells us differently.
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Post by Lisa on Jun 10, 2005 16:30:55 GMT -5
Faith said: "I will clarify. My immediate family all has this illness to different degrees. Our symptoms appear to get more similar as time goes on. However, family and friends who I have spent time with at different times and stages of my illness does not appear to have caught anything from me (the best I can tell)."
That's exactly how it is in my situation. I have it the worst. My husband has lots of stuff that comes off of his body, but he doesn't seem to have crawling or itching or any of the other things I do. He will get a few things that look like bites and bumps, but that's it. His clothes are awful with this stuff, but they don't bother him. My son will feel the sharp sting at times and his hair falls out, but you can't tell at all. He feels yucky a lot of the times and gets pain in his body but handles it very well. You would never know.....such a trooper. Me, I have it all!
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Audrey
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Post by Audrey on Jun 10, 2005 16:35:30 GMT -5
FOR FAITH:
In reply to your question as to how my brother-in-law passed on. They were refugees from the hurricane in Florida. He already was ill, in and out of the hospital, and on dialysis....very, very sick. Evidence of bites on his arms, constantly itching his head and hair, as my sister still is. They gave my brother im law meds, tranquilizers, I suppose. I think I know exactly when I did grt it. He had fallen during the night.....he had come out looking for a snack....I was in the guest room and heard a big crash.....my sister did not hear it, so I went out and helped him up. He was just wearing shorts, and the only way I could life 165 lbs. is to grab him, skin to skin contact. I do feel it is odd that so many of the people afflicted with this condition had worked in hospitals and in the medical fields, or were in hospitals.
As to my sister, no she is not supporting me. She seems more concerned that I might contaminate her home, recently rebuilt, and new in every way. I speak to her once a week, if I call her. Now I cannot visit my children up North unless I stay in a hotel, which I can't afford; so I am planning on moving there. I am going in three weeks to explore the possibility of renting because I can't afford the taxes there, and when I gret back I will be selling my home in Fl.....which I love, but seeing my family is more important.
Unfortunately, we all have our very sad stories; but with the grace of The Lord, we will go on; and hopefully we will find a normal life again. I am not angry at anyone, and I keep reading the bible and the way Jobe had pestilence......he was very good, and normal life, plus many riches were restored to him because he never lost faith in his God.
God Bless Everyone!
Audrey
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Post by Faith on Jun 11, 2005 14:22:38 GMT -5
Audrey....I am so very sorry.....for you and me....I also had to move and could not be around my children for a long period of time. I also fill my heart with job and have re-read his book. I guess that is why I chose my screen name on lymebusters as "Faith". That is not my name, but I need to remind myself and not to lose perspective.
Lisa, yeah....that my story exactly.
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Post by bb on Jun 11, 2005 20:08:38 GMT -5
I had the bruises at first but the yeast enzyme made them go away or go deeper into my body.
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Post by itchingntexas on Jul 2, 2005 3:04:25 GMT -5
Lisa, we definitely have to talk soon! Your situation is so much like mine it is uncanny. If our lives are as parallel as I think, your husband is undoubtedly being held up by Almighty God in order to support your family. And to whomever (above) said family thinks this is just another illness...I can so relate. And I do every single healthy thing you can do...to no avail.
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Post by Hope on Jul 2, 2005 4:06:07 GMT -5
Some one said, I think it was Jeff, that Schwartz thinks it is transmitted by the ones that go airborne.
This makes sense to me because I have seen my floaters floating at people I was around. I posted a while back about feeling like a flower that was pollinating people. Common sense tells me I was probably spreading this stuff around in large amounts.
I know that my child was not born with it but has it now. My ex boyfriend got it from me too.
I also know for a fact that even on the Sulpha drugs not all are dead that come off of you.
Yes, I have the purplish scares and the white ones too and these things always look like you scratch them way more than you ever do. Something is scratching it and it’s not us!
Glad to see that your sister has you for support because this is very hard to deal with. Please take some precautions and I’m sure your sister would understand. Have her check you out well so you can have reassurance for yourself too.
Good luck
Peace, Hope
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