LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » How does this happen?

 - UBBFriend: Email this page to someone!    
Author Topic: How does this happen?
2roads
Frequent Contributor (1K+ posts)
Member # 4409

Icon 1 posted      Profile for 2roads     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lyme Family,

I saw we lost another member to Lyme.

In the video she seemed okay. I've seen others who can't talk and walk. Their death seems more of a reality to me because of their apparent condition.

But how does someone functioning seemingly well like this die from Lyme. What is the degradation process in this case? Sorry to be so morbid, but I want to understand as my whole family and I have it.

I believe my mother did too. Her death certificate said "failure to thrive". But she had a long history of autoimmune problems.

A few falls and some aging (not to mention some Percocets and other pain killers), and she became emaciated. Stopped breathing one day....and died. Is this sort of what happens to those that look okay one day and then drop the next?


In horror,


2 roads

Posts: 2214 | From West Chester, PA | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
desertcanyon
Member
Member # 17998

Icon 9 posted      Profile for desertcanyon     Send New Private Message       Edit/Delete Post   Reply With Quote 
2roads,

I have been wondering the same thing ever since yesterday when I received an email from the "Under Our Skin" mailing list about her death. I am so disturbed and saddened by this. Her sister emailed me a list of informative links earlier this year, and I was very grateful.

In the video, she talked about "lesions" in her body. What kind of lesions?

People think that I'm okay because when I get out and about, I seem fine. But much of the time, I'm not, and rarely even leave the house. It is scary to me not to understand what might be at work in my body.

I know that she was receiving treatment, and it seems that she was very well-informed about this disease. Does anyone know what happened?

Thanks for asking, 2roads. And thanks to anyone who can shed any light on this.

desertcanyon

--------------------
Grant that I may not so much seek to be consoled as to console; to be understood, as to understand; to be loved, as to love

Posts: 61 | From Atlanta, GA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359

Icon 1 posted      Profile for Lymeorsomething     Send New Private Message       Edit/Delete Post   Reply With Quote 
Please clarify...was this person in the movie? Thanks.

--------------------
"Whatever can go wrong will go wrong."

Posts: 2062 | From CT | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551

Icon 1 posted      Profile for gemofnj     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lyme, this might help explain. And I believe she was in the video, Under my Skin.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=073862

Very tragic. SAD.
[Frown]

Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
2roads
Frequent Contributor (1K+ posts)
Member # 4409

Icon 1 posted      Profile for 2roads     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lesions? [confused]

Sounds like a cancer....

Odd [shake]

Posts: 2214 | From West Chester, PA | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
Ocean
Frequent Contributor (1K+ posts)
Member # 3496

Icon 1 posted      Profile for Ocean     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had read somewhere that she had leisons on her liver, spine and brain.

take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

Posts: 1619 | From Ohio | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
leslie was in the JEWELL, IOWA lyme memorial at their lake.


leslie held up a photo of a 30-yr. old woman, Jeri Fosseen who had died around the time of my correct diagnosis. She spoke a little ... just remember the scene of holding up the photo and that is Leslie!


i don't know her story. lesions are normally found in the brain during a MRI, and many get diagnosed that way with MS ! that's all i know on this subject since i don't have them.

IP: Logged | Report this post to a Moderator
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346

Icon 1 posted      Profile for disturbedme   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
You guys got it confused... I'm pretty sure she didn't mean lesions like THAT (cancer, etc.). In my opinion, she was just using it as a descriptor while talking about lyme, NOT that she actually has lesions (though she might, as lots of lymies do).

She was talking about how most people with lyme look healthy from the outside, but if people could look inside at the lesions this disease can cause on organs, etc., etc., then they would know she (or anyone with lyme) is not really healthy.

I don't know how she died either. [Frown] It is scary. All I know is they said she died of complications from lyme. Not sure what that could be though.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
i have been feeling the same as you guys and wondering how to ask

i'd really like to know-my mom lingered for 7 yrs

then cause of death was written as pneumonia

if i knew i could go quickly i think i would be more motivated to get my affairs in better order-and i would like to tell the kids of the possibility

i was really confused to see her so well and then gone so soon

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
desertcanyon
Member
Member # 17998

Icon 1 posted      Profile for desertcanyon     Send New Private Message       Edit/Delete Post   Reply With Quote 
The link provided by FuzzySlippers didn't work for me. The video clip I was referring to is on this page: http://underourskin.com/blog/?p=67

In the interview, she (Leslie Wermers) says,

"One thing that's so hard about lyme disease is that you look healthy. I want to invite you inside my body and see the lesions that are all over inside my body. I want to take you to the labs and see how bad my cell counts are. That's our biggest struggle, because somebody will look at you and say, 'well, you're not chronically ill.' But it's inside our bodies that's getting attacked, not the outside."

So it sounds like she did have real lesions and that she attributed them to the lyme.

But that same page says she died from heart failure in her sleep.

I guess "lesions" just sounds so permanent and insidious, somehow, that that scared me more than the idea of heart problems.

--------------------
Grant that I may not so much seek to be consoled as to console; to be understood, as to understand; to be loved, as to love

Posts: 61 | From Atlanta, GA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
that's the first i heard it was heart failure-i'm wondering how many die while fighting lyme and have something else written on the death cert

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707

Icon 1 posted      Profile for Melanie Reber   Author's Homepage         Edit/Delete Post   Reply With Quote 
This is a copy of my reply to another post yesterday asking about stats on Lyme related deaths... http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=073969

"Unfortunately, there are no `official' answers to your questions. However, I will try to answer as best as I can based on my ongoing research.

Death from TBDs has been denied and underscored for so many years, that accurate stats are just not available.

Because Lyme in particular can affect any bodily system, many fatalities are attributed to `something else' going wrong...without digging deeper for the cause.

1. We do not have a cumulative list, only a very small percentage of names that have been found or provided to us. LymeMemorial.org lists 650+ documented cases.

2. No, it is never clear if a patient will die from TBDs. Treatment response varies far too much. Yes, sudden death can and does occur.

3. There are fatality citations, case reports and autopsy reports available, but far too few. These provide without question the cause of death. (Also listed on LymeMemorial.org)

The Obit thread is located in General Support and is updated regularly. The CDC is no longer stating that `no one can die from lyme'. The new standard verbiage is `rarely fatal'.

Below are a few percentages of Fatality rates for individual co-infections. Please see source for complete information. (Citations can be found on the `Transmission' page at LymeMemorial.org)

Anaplasmosis: 2-5%
Babesiosis: 5-10%
Bartonella: 10-90%
Brucellosis: less than 5%
Colorado Tick Fever: no known %
Ehrlichiosis: 5-10%
Lyme disease: no known %
Query Fever: 65%
Relapsing Fever: 10%
RMSF: up to 30%
Tick Paralysis: 11.7%
Tularemia: 30-60% "

...

This has been discussed before here many times, but I feel it is extremely important to keep repeating...

PLEASE make your family aware of your wishes to have the cause of death listed in your Obit. Even without an autopsy, your obit should list that you were suffering from tickborne infections.

Although many who knew and loved Leslie were aware of her struggles with tickborne infections...her obit still did NOT list this.

Therefore, down the road...some will say that this death was NOT caused by tickborne illness!

Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
AP
LymeNet Contributor
Member # 8430

Icon 1 posted      Profile for AP   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I can't read all of her story. It's terrifying to think that the two of us were in the same place at the same time.

I was hospitalized last weekend with severe anemia, and the beginning signs of heart failure.

On the second, all of my friends gathered by my bedside and took me in for what they thought was the last time. Medication was not working, and I am 100% against blood transfusions.

Before I went to bed, the doctor called my mother and told her that I would most likely not make it through the night.

Sometime after I'd gone to bed, the nurses came in to draw more blood and gather vitals. They couldn't wake me up. My BP was just under 60/30, and when the doctor came in, they were able to wake me just enough to hear the doctor say I was taking my final breaths.

At 26, life outweighed principle and I hesitantly signed the consent form.

I'm still not able to look myself in the mirror, but I'm here. It's really scary to read that someone else wasn't as fortunate, and left us the same day I came the closest to making my departure.

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

Posts: 644 | From WA | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
ap, [group hug] [kiss]

what a touching true story you wrote about yourself! thanks for sharing and comparing it to leslie's story...


it's sad to lose anyone to our diseases, but NOW THEY ARE HEALTHY and what advocates they are in HEAVEN!! [group hug] [kiss]

IP: Logged | Report this post to a Moderator
Cold Feet
LymeNet Contributor
Member # 9882

Icon 1 posted      Profile for Cold Feet   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Melanie, thx for repeating this information, as it is the first time I saw those stats! Yikes?!

AP, I can't believe what you've been through. I hope you grow stronger every day!

[Smile]

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

Posts: 828 | From Mass. | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Alv
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
Lessions..do not be surprised...

13 years ago I had a ultrasound and was found 2 lessions (not females) in my liver.Than my lyem symptoms started.Than 5 year later I did a Scanner and came up with 3 .I know that bart can cause lession and nodules...BArt was my worst co infections...

So do not be surprised...Than I saw lessions in the skin and they send me to a dermatologist and told me to check for cancer...( again not dangerous) .1Year later I felt a numbnees from head to toe and a sharp pain from my neck down to my spine -right in front of the computer in my job...

I was checking 2 years prior to that for the diagnoses they gave me as LUPUS, CANCER , maybe lauqimia..Mercury poison....yes and I have LYME and 8 coinfections...all of them .

my worst , bartonella and Q fever.Oh by the way , I always had BP 60-30 very scary and pale .

IP: Logged | Report this post to a Moderator
AP
LymeNet Contributor
Member # 8430

Icon 1 posted      Profile for AP   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Cold Feet:

AP, I can't believe what you've been through. I hope you grow stronger every day!

[Smile]

Thanks. I'm one of those girls that'll make her friends laugh as tears are flowing down my own cheeks. This was the first time in my life I let my true emotions show, and it terrified all around me.

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

Posts: 644 | From WA | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
desertcanyon
Member
Member # 17998

Icon 1 posted      Profile for desertcanyon     Send New Private Message       Edit/Delete Post   Reply With Quote 
AP,

I'm glad you're still here. You remind me of a friend of mine who has so many serious physical problems on top of having had an extremely traumatic upbringing.

She is always joking and making people laugh. When you ask her how she's doing, she'll say something like, "Hey, any day above ground is a good one!"

But when it comes down to the nuts and bolts of things, she's not afraid to tell the honest truth, either.

Why do you feel that you can't look yourself in the mirror after receiving a blood transfusion?

I'm glad you chose to live.

desertcanyon

--------------------
Grant that I may not so much seek to be consoled as to console; to be understood, as to understand; to be loved, as to love

Posts: 61 | From Atlanta, GA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
AP
LymeNet Contributor
Member # 8430

Icon 1 posted      Profile for AP   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by desertcanyon:
AP,

I'm glad you're still here. You remind me of a friend of mine who has so many serious physical problems on top of having had an extremely traumatic upbringing.

She is always joking and making people laugh. When you ask her how she's doing, she'll say something like, "Hey, any day above ground is a good one!"

But when it comes down to the nuts and bolts of things, she's not afraid to tell the honest truth, either.

Why do you feel that you can't look yourself in the mirror after receiving a blood transfusion?

I'm glad you chose to live.

desertcanyon

Haha... When people ask me what my first thought is in the morning, I always respond with a "Hello world..." Every day is a new day.

I am really against blood transfusions. So much so, that just before I went into the hospital I'd been talking to one of my best friends and told her that if ever I woke up from a horrific accident and found out I'd received blood, I'd quickly take my own life.

It's something I've always been against, and the fact that I had to throw my personal feelings out the window makes it really hard to face myself right now.

Just a really scary time for me. It was terrifying that the nurse had to help me hold up the pen to sign the consent form. It was horrible to lay in bed and get totally beat down by the first unit of blood - even the hematologist was shocked at my body's reaction. Lying there tasting and smelling someone else's blood was a horrific experience I never want to go through again.

I'm grateful I had friends sitting by my side holding my hand. I did it for them.

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

Posts: 644 | From WA | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.