Morgellons Support Network
Compassionate Networking for Morgellons Syndrome and Skin Parasite Sufferers
SEX - Morgellons has no boundries when it invades a body!
I wanted to start this type of survey but was not sure how to go about gathering the data. I hope everyone with Morgellons, at least those that know they have it, take the survey and populate the database so the medical community can learn about this disease.
Intimacy has become a big problem for me and my man, any time my skin experiences friction a dry material containing eggs and worms appear; add moisture and the dust turns to a thick substance that not only gets all over us but in the bed and also becomes airborne.
Before I realized that my illness was not a germ or fungus but caused by a parasite my husband, Steve and I had a wonderful, uninhibited intimate relationship. He is a hands on guy and we enjoyed massage, both giving and receiving but we didn't have any idea what was going to happen to our hands.I can't touch food without gloves on because of the worms going from my fingers into it, they get excited when pork is involved.
I warned Steve not to touch me especially when I felt movement but he behaved as though we were well. My feet have been problematic for years with a white jellatenous substance coming out from pressure; Steve didn't believe I had anything that could harm him so he would rub my feet ...I am a blessed woman...here is an x-ray of his hand:
NOTE: First Metacarpophalangeal Joint (bottom of thumb) is pushed out. Finger tips have something between his skin and bone.
We keep hearing the word "Arthritis" but I know what we have is curable.
I started to notice exhaustion and fatigue would set in earlier and earlier for me, then the length of feeling not well was extending until I was unable to get out of bed for several months. We have been a couple for 10 years and married June 11, 2005, three days before our first anniversary Steve had to move into his own room because the worms exiting my body at night were getting onto him and the creepy feeling was too much not to mention the sleep deficit. How unfair can life get?
Our desire to be intimate has not decreased but after Steve got a Head CT, with and without contrast he has realized that he cannot kiss me...anywhere.
There was no mention of the extra circles in his jaw by the radiologist. Nor was there a mention of the worms between his skull and scalp.
Hair plays such an important role in this disease, anywhere there is hair there are worms. I heard the "vector" has not been determined...how about HAIR?
Does anyone have a solution to eliminate or minimize the physical and environmental infestation that occurs during intimacy?
Views: 164
Replies to This Discussion
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Permalink Reply by voiceresearchers on -
Wow, Mary. I am so sorry you have to deal with this. But I am so glad you have come forward to share these experiences. It will help us all to better understand what we are dealing with!
Jan -
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Permalink Reply by Mary Jones on -
I know the answer - cure our bodies of these horrible parasites! If you know anyone researching a cure please ask them to contact me and I will provide them with good information to give them a clearer vision of what they are trying to kill!
voiceresearchers said:Wow, Mary. I am so sorry you have to deal with this. But I am so glad you have come forward to share these experiences. It will help us all to better understand what we are dealing with!
Jan -
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Permalink Reply by Linda Lou DeBoe on
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Mary, THANK YOU! THANK YOU! I know what you are going thru and I was hopeing someone out there would finally talk about the sex part of all this.I just joined the group and have been reading everyones comments. My husband and I have been sleeping in seperate rooms for a year now and what a horrible strain it has put on our relationship!!!!! I call this last year I finally went to see an infectious disease dr. and was diagnoised correctly after of course having been told that is was lice,than scabies,than lyme,than of course the infamous one liner that it is all in my mind and I'm delusional.All of the different meds.and there were many, I became toxic and that was also hell just what I needed "right" one of them burnt the skin off my left ear and speaking of ears does anyone out there have problems with them in you'r ears I sleep with cotton balls in them every night for fear more will get in if I don't dumb I suppose but you know how you try just about anything hopeing you will find some answers.My husband and I are afraid to even hug or snuggle let alone have sex for fear we might create something else that he has on him and me on my body and wham than we have produced one more bug to deal with!!! I have more to say but will have to do that another time I took my sleeping pill and WOW am I feeling sleepy my dr.finally orderd them so I could start getting some sleep before that I was a walking zombie all day from no sleep.So Good Night! I will talk to you later in the week I have so much to say yet. LINDA DeBoe.TRUST IN OUR FATHER AND WE WILL PREVAIL!!!!!!!
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Permalink Reply by Mary Jones on
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Hi Linda, I am happy to meet you and sad you have to deal with this ugly bunch of organisms. I have found a few products that these beasts seem to go inward when applied. All Stop Healing Gel is one and there is a lotion that a man sells, Richard Holt, but he charges so much I am hesitant to promote it...neither of these products smell or taste bad. Even though my husband and I minimized touching all over, having our bodies against each other for very long, keep the feet away and don't rub them on sheets, and wear a preparers cap (like a shower cap only really cheap), we are able to act like a couple for a short while.
As for the ears:
Yes they do get in them - they are EVERYWHERE. When I start to feel presssure & movement I us Klenx Ultra Soft tissues, slightly damp with either water or Kleen Free & I move it around until it becomes a ball then I roll it till it is slimy then get a new one. Wear GLOVES - what ever comes out from the place being rolled can get right into the hands or any other skin they touch. This is also why I must stop about every 20 minutes to clean up the area with paper towels then secure them in bagies before going in the trash.
THIS CAME OUT OF MY ARM:
Our hair is a big player in this disease, keep all hair that has fallen out cleaned up. Brushes and combs are a problematic.
I will be back. Good night.
Mary
Linda Lou DeBoe said:Mary, THANK YOU! THANK YOU! I know what you are going thru and I was hopeing someone out there would finally talk about the sex part of all this.I just joined the group and have been reading everyones comments. My husband and I have been sleeping in seperate rooms for a year now and what a horrible strain it has put on our relationship!!!!! I call this last year I finally went to see an infectious disease dr. and was diagnoised correctly after of course having been told that is was lice,than scabies,than lyme,than of course the infamous one liner that it is all in my mind and I'm delusional.All of the different meds.and there were many, I became toxic and that was also hell just what I needed "right" one of them burnt the skin off my left ear and speaking of ears does anyone out there have problems with them in you'r ears I sleep with cotton balls in them every night for fear more will get in if I don't dumb I suppose but you know how you try just about anything hopeing you will find some answers.My husband and I are afraid to even hug or snuggle let alone have sex for fear we might create something else that he has on him and me on my body and wham than we have produced one more bug to deal with!!! I have more to say but will have to do that another time I took my sleeping pill and WOW am I feeling sleepy my dr.finally orderd them so I could start getting some sleep before that I was a walking zombie all day from no sleep.So Good Night! I will talk to you later in the week I have so much to say yet. LINDA DeBoe.TRUST IN OUR FATHER AND WE WILL PREVAIL!!!!!!! -
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Permalink Reply by Linda Lou DeBoe on
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Hi Mary,thank you! I have come a long way since I posted that.Of course I,m still fighting the good fight.I have found being a bullhead does come in handy after all!!!! I pray every day for all the people out there who are dealing with this horrible disease it literally sucks the life out of you at times.I use sulphur soap in my shower and Dr.Bronners shampoo plus all that I have learned from the comments people have shared.My husband is a chiropractor and keeps me supplied with vitamins and whatever info he can find. So if anyone out there would like to ask anything feel free. Take care and thank you again!!!!!!!
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Permalink Reply by denise bailey on
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I wish I could help but I have just found this site and Im relieved and devistated. I wont have sex or anything with my boyfriend?! I tell him because of the worms . He says Im crazy! Whatever I know they are every where . I feel the same exhaustion. Is this going to get worse. I do find they come out more with my period too. My hair is , If it is hair , coming out in mass hand fulls and my daughter whos 8 , her hair is now breaking and falling out. That scares me the most. Did you get any answers from any one? Please share Im so scared. Thank you Denise
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Permalink Reply by Shiloh Hesse on -
I want to hear more.My husband can not undertand why I do not wnat to hve sex. I do not want to further infect either of us! I knowthis has progressed andis getting worse. There are so many intimate details..........I need a new forum for this!
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Permalink Reply by Robin Kirk on -
I'm in the same boat at present. We have been living together for 15 years and I had to stop sleeping in the same bed with my sweetheart about a year ago because I don't want him to get whatever this is...although after reading what you guys are going thru, I'm wondering if my sweetie doesn't already have the beginning of this horrible what-ever-this-is.
I'm sorry to say, I haven't found a solution either unless showering together would work.
The x-rays showing what this is doing to both of you is really frightening and all of us need to stand up and be noticed!!
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Permalink Reply by K on -
Robin Kirk said:I'm in the same boat at present. We have been living together for 15 years and I had to stop sleeping in the same bed with my sweetheart about a year ago because I don't want him to get whatever this is...although after reading what you guys are going thru, I'm wondering if my sweetie doesn't already have the beginning of this horrible what-ever-this-is.
I'm sorry to say, I haven't found a solution either unless showering together would work.
The x-rays showing what this is doing to both of you is really frightening and all of us need to stand up and be noticed!!
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Permalink Reply by K on
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How are you guys doing now?
Shelly has helped me so much in simple instructions of what she does every day with the soaps and NEEM OIL .I purchsed some on line and sent for some
I have the same problem as the writer about her boyfrind/husband/partner-answering all the people who wrote with this problem.
Can't remember what each person said but ,Yes the hair and body crevaces harbor tons of eggs.The more you scrub, the more stuff comes out.Sex is not possible.
I wonder what happened to Mrs DeBoe(THat weas my Grandma's Maiden name and I have been trying to find people with that name,) though certainly not since I got this in May of 2011.Ity consumes the person, and my husband wants me to "See someone" I think he has gotten crazy after years of marriage he askes me to leave when he talks to me.He talks to himself.
I don't know if anyone has read Amy Tan's book about her battle with Lyme disease and being told she could have it because she lived in New York-even though she told the doctors she hiked all over Up State New York and was in China looking for her roots.She had those spots of infection in her brain scans.They told her"Oh some people have more.She is well to do, her books are made into movies, yet in 1999 she could get no help.She saw things,was so miserabe until she finally found a Lymne literate doctor.
We need doctors trained in the treatment of this disease-I beieve one should not have sex until the pubic hair is treated, and gloves for touching, but maybe not until your much better, because it riles them.I know this is not what you wanted to hear, but lets hope for a treatmwent that works for everyone-maybe that is not possible, but this IS a parisite, and there must be a cure, or something that keeps them at a tolerable level.
How are you, and How is your Man?
Those were very troublesome spots on those exrays and CAT scan of his brain.Egads.
I am a nurse Practitioner-the NEEM oil seems to definately help.I took a shower and things got really worse.Previous to that, I washed with clorox wipes sounds crazy, but it seem to work.This is my 2nd day with the neem, but it has begun to help.
Ask Shelly her regimen, or look on the blog-I read it, and now can't find it, but she mentions it.She bought all new washable furnature.Wipping eggs off seems to be extreamly important.Please tell us how you are doing.
The Pipster has done much research, and she is the lab rat.She tries them , and tells us about it.She is on a new regimen now, I can't wait to see how she does.
Katie
Katie
I have learned more in the 1 1/2 months I have been reading this
katie said:
Robin Kirk said:I'm in the same boat at present. We have been living together for 15 years and I had to stop sleeping in the same bed with my sweetheart about a year ago because I don't want him to get whatever this is...although after reading what you guys are going thru, I'm wondering if my sweetie doesn't already have the beginning of this horrible what-ever-this-is.
I'm sorry to say, I haven't found a solution either unless showering together would work.
The x-rays showing what this is doing to both of you is really frightening and all of us need to stand up and be noticed!!
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