Topic: My neighbor with suspected Lyme/Morgellons passed away - Q's re: autopsy
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
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.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
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?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
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.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
SusanK, I just sent an email to some of my Texas contacts and will let you know if they have info. Hugs, again.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
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.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
SusanK, I'm so sorry to hear you lost your friend.
**Hugs** sammy
Posts: 5237 | From here | Registered: Nov 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
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?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here is a link to a new book about Morgellons:
Look out! The pictures below the text are very graphic!
Posts: 9931 | From Maryland | Registered: Dec 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
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.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Update: I don't remember receiving any response from Professor Wymore.
Posts: 28 | From OH / WV / AL | Registered: Dec 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
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.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
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.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BettyG asked this be posted here concerning autopsies.
Dr. Paul Duray Research Fellowship Endowment, Inc.
posted
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**
[ 12-27-2016, 02:15 AM: Message edited by: Robin123 ]
Posts: 68 | From new york | Registered: Aug 2016
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