How to respond

[Daughter]

Hello Everyone,
I just can’t begin to express how much my heart aches for every Morgellons sufferer anywhere. Whatever I try to say in sympathy just looks so trite compared to the reality of what everyone is going through. I have been following up on Morgellons for the past year and a half ever since my mother discovered that she has the symptoms of this disease/syndrome.

I live in Israel, and my 77 year old mother lives in the UK. She has told me that she wants to come and visit me and my family. I am at my whit’s end agonizing over the right thing to do. My sensible side of the brain says until more information is available about how Morgellons is spread, it is my duty to make sure that I protect my family. Even if I take the risk and just see her myself in a hotel, I couldn’t be sure that I still wouldn’t give it to my children and I don’t have the right to take the risk with their lives. On the other hand, this is my MOTHER we’re talking about!

I would like to hear your thoughts and experiences about how you deal with the fact that you don’t know how/if you are contagious.
1) How do you deal with interacting with other people that come in close contact with you (in and outside the home)?
2) What decisions been made within the immediate and extended family about who/how you are in contact with each other?
3) Do you think that you personally have been responsible for passing it on to anyone? If so how?
4) If you had a daughter and grandchildren abroad would you visit them?

My mother’s experience with the medical profession in the UK has been pretty much like everyone else’s on this board. She took “fluff” samples to various doctors and hospitals etc., told them she has heard about Morgellons and thinks this is what she might have, and her answers from healthcare professionals has always been “Here in the UK we don’t believe in Morgellons”. They said that she has nothing wrong with her, and that she’s not contagious.

After there were no more doctors to see, THAT’S when she decided to DELUDE HERSLF and pretend she HASN’T GOT Morgellons! She decided that she is not contagious and whatever it is will clear up by itself. Fortunately her face and forearms are not affected so no one knows about it. For the last year and a half she has been going about her daily life meeting people and inviting friends to her house. In her own words “…as for the fibres with coloured fluff that could only have been bits of my hair that I shed and in turn attracted some clothing fluff. “

She is understandably very scared of people avoiding her and is able to convince herself that if she ignores it she hasn’t got it, and wants me to do the same. I expressed to her my concerns and of course she is taking it very badly.

Please share with me your thoughts, experiences and advice about the disease being contagious. I am at a loss what to do or what to think anymore.

[hilly]

Daughter... I do understand your worries and they are worries that I have had and so have many others here. I live in the UK.... I got this wretched disease about 3 years ago and have Lyme disease and co infections as well. My husband has not caught this and I regularly see my my daughters and my grandchildren ... I have also been to stay with my son and his little ones in Spain.. as far as I know of noone who has caught this from me. My cat and dog have at times shown signs but by rubbing them with DE all over, it has cured the problem.
When I first went out to the States to be diagnosed for both Morg and Lyme, I went with my daughter. I was anxious about sharing a hotel room with her. Ginger Savely told me not to worry and she is fine.
I hope this helps.
Hilly

[hilly]

Daughter... I hope some others will give you comfort as well. It seems that when people in the same family have the disease they have all got it from the same source..soil, plants, water, whatever and as a rule have low functioning immune systems... and maybe also have Lyme disease first even if they did'nt realize it. Good luck Hillyx

[Daughter]

Thank you Hilly,
I am very glad to read that your close family members are not also suffering from Morgellons. You didn’t mention how decisions were made in your family about whether or not to consider the disease contagious. I should imagine you were already in daily contact with close family members well before you found a name for your symptoms, and if they hadn’t caught it by then, I guess the question was a moot point.

Your answers are encouraging Hilly, and I thank you for that, but I just can’t help but wonder what the silence from others to my question really means. I only hope that I didn’t offend anyone by asking such blunt questions about an extremely sensitive issue. If I did, please everyone accept my earnest apologies, I certainly didn’t want to upset anyone.

[posey]

I have stayed away from family get-togethers also, as well as not going to church for fear of leaving something behind which another may pick up and contract this disease.

I worry they may get it but it may be a slow developing disease. I believe this started on my facial skin about 6 years ago. It wasn't acne I was getting but I wouod get mounds or hills of thickened skin. My eye lis began to get all crinkly and creased as it did below my eyes. My eyelids were covered with bumps and my forehead got long creases. Then my chin started this and I ha tiny hard white things under my skin that were impossible to remove. I began to get more and more creases on my cheeks and hair lying under my skin.

It wasn't until Oct. 2008 that I felt anything. At first I thought I might have an over growth of demodex, which we all have in our hair folicles. I thought I had some kind of bug so I thought maybe I could kill it by dying my hair. This did not work and I even noticed the white things which had now started growing from my scalp did not change from the dye. My hair were moving. Standing straight up and swaying back and forth. When I would pull one out it wound be wrapped around my real hair, maybe 2-3 strands. After taking a closer look at my scalp and seeing all the crap, debris, shorter hairs hooked on my hair and the things, I shaved my head and it is still shaved.

I have an enormous buildup of white matter, gunk, under or on top of my skin. I believe this was all building up in the process before the "things" became active.

I miss my kids and grandkids but feel there is still too much unknown.

posey

[spotted dog]

Hi Daughter, I've had this disease for 18yrs, although I did'nt know what it was called until 2007. My grandaughters used to stay wkends with me & I had to sleep in the middle of the double bed,they used to elbow me & say "stop scratching" they are now 22 & 28 yrs, no one has ever caught it from me, although I want to hide from the world & not see anyone, I live in U.K.also. hope this helps. Spotted Dog

[hilly]

Daughter.. my family have all been extremely supportive from the start... I am very lucky. Because we are so close there was talk of it possibly being contageous but after the advice from Ginger Savely there has never been any question of not seeing them regularly and having lots of cuddles with the grandchildren. I had a very low immune system and already had Lyme disease which I think why the morg was able to get into me. My husband has a good immune system and so far is very well. I have no idea what will happen in the future, but we must all just hope that better treatments will be found and joy oh joy, a cure.
Hillyx

[girlsoalone]

Posey, I've had similar fears and concerns as you. If you don't mind sharing, however, I was wondering how you acquired Mogellons as Hilly has made some good points about immunity and infection source affecting indivdual vs. family transmission. It's may be true though that different stages of the illness may pose different risks of being contageious... I'm afraid of that too as it seems active and adaptive to different degrees in different individuals.

[lamb]

The train already left the station. I sleep in the same bed with my beloved but I don't sleep in the same sheets. I hug and kiss my son but I make sure that we never exchange any fluid. You do what you can to maintain your relationships.
First rule is Do No Harm.
Since we don't know the rules... if you truly love the other person..be guided by intelligence/ sanity and keep them safe.