I don't know where to post this. Thought to ask here. I just found out a friend/neighbor was found dead today in her house. She had been ill/undiagnosed for years. I urged her to be tested for Lyme (Igenex) and she told me it came back positive - but she could not face it / would not treat for it. Also she had described fibers coming from her skin - showed some to me - I mentioned Morgellons - she had not heard of it.
She had other problems - I think resulting from being so sick and no one believing her. Which led to drinking etc.
I'm sure an autopsy/necropsy will be performed. It just occurred to me that the M.E. should be alerted (?) to look for Lyme and Morgellans. Could that be done? If yes - how?
Ordered by her doctor? Her family? Her family and neighbors labeled her as a mental case. I sincerely think any mental issues resulted from physical issues. I would like for her to be vindicated. I am so sick - want to do something for her this regard - don't know how to go about it.
I am so stunned by the news of her death. Cause of course not known yet. Help please.
Posted by Lymetoo (Member # 743) on :
Oh my gosh. I can't believe this, Susan. Thanks for alerting me to this, as I know this person too.
So very sad. I'll PM you.
I really don't know anything about your questions. Maybe you could contact the coroner's office?
Posted by me (Member # 45475) on :
Oh SusanK, I am so terribly sorry. I wish I had words that could provide comfort. We are here for you. What about contacting Charles Holman morgellons foundation http://www.thecehf.org/about-the-charles-e-holman-foundation.html - or lymedisease.org? I don't know if they could get the message quick enough. I sure hope so.
We are here for you. Posted by me (Member # 45475) on :
SusanK, I just sent an email to some of my Texas contacts and will let you know if they have info. Hugs, again.
Posted by susank (Member # 22150) on :
Thanks all. "Me" - I sent an email to her/our doctor informing of her passing. Also asking if she could somehow contribute medical history to the M.E. office. Who knows if anything will come of that. If Lyme and/or Morgellons were a contributing factor in her death - I think it should be looked into - tested for etc.
I don't know her family to be able discuss this with them - and now is not the time to discuss it - I'm sure they're in shock.
But.....if she were to be tested - I think time is of essence.
I'm so cold........tired - sorry - rambling here.
I don't want to be interfering/whatever about this - but I think I'm the only one who knows some parts of her medical history.
I thought about calling the M.E. office myself - even if anyone would talk to me - would they take me seriously? About Lyme maybe. But Morgellons?
"me" perhaps one of your contacts could contact the M.E.? Would be taken more seriously - and have more info? Advice how to test? You have my email address - give to them - I'll provide info I know.
I would like justice for her - also "for science".
Again - pardon my poor explanations about this - frozen foggy brain and body.
Posted by sammy (Member # 13952) on :
SusanK, I'm so sorry to hear you lost your friend.
**Hugs** sammy
Posted by susank (Member # 22150) on :
Thanks so much. I called the M.E. office today - they were so nice. I gave them our doctor's name and mentioned Lyme and Morgellons. The gal I spoke to had not heard of MD of course. Try describing that one..........
I don't think any of her doctors said anything to her about MD. Only me. I saw her sores/lesions and the one fiber she had saved.
Folks - is Morgellons for real?
Posted by TF (Member # 14183) on :
Look out! The pictures below the text are very graphic!
Posted by me (Member # 45475) on :
I haven't heard back from any of my contacts--they are usually super quick to respond. My guess is they are engulfed with holiday stuff. I know one of the ladies has several kids and the other is going on or maybe already on a cruise. I will email if I hear something. I usually receive emails from one of them almost daily and I haven't heard from her in several days, so my guess is she is already on the cruise.
I'm glad you called the doc and the ME's office.
I am a little over halfway through with the Morgellons book Tincup referenced above. I think it is very real.
I'm so terribly sorry, SusanK. You have my email if you need me--I'm here, okay? Hugs.
Posted by hshbmom2 (Member # 49510) on :
Hi susank. This link is to a 2010 Lymenet post with the name of a researcher. IDK if he's still working on Morgellons.
Update: I don't remember receiving any response from Professor Wymore.
Posted by me (Member # 45475) on :
SusanK, I received a response. The lady kindly contacted two people she knows who are very active in the Morgellons community. However, she has not received any responses and presumes, as I do, people are busy with the holidays. I will let you know if I hear anything.
Posted by susank (Member # 22150) on :
Thanks "me". I connected with one of the CEHF gals. She's been very kind and helpful. She provided me with this link:
I had asked her how the fibers could be colors like red and blue.
Scary stuff.
I'm remembering the fiber my friend showed me - one that she had saved. It was clear/white from what I remember. About 1.1/2" long IIRC. I remember thinking it could be a human hair - or possibly a hair she had picked up from being around my horse.
But then the fiber did a strange thing. Held upright - it twirled and wrapped around itself. Again - IIRC. I remember her saying, "what does this?" Neither of us could think of anything that could.
Posted by Tincup (Member # 5829) on :
BettyG asked this be posted here concerning autopsies.
Dr. Paul Duray Research Fellowship Endowment, Inc.
Please read new book on Morgellons by Dr. S, it is very good with tons of information. To my knowledge she is either the only one or one of few treating this as another presentation of lyme, and has helped many patients. Book is available in Amazon.
**editing out last name of LLNP per Lymenet rules**
![[group hug]](graemlins/grouphug.gif)