2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
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
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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
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Lymeorsomething
Frequent Contributor (1K+ posts)
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posted
Please clarify...was this person in the movie? Thanks.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Lyme, this might help explain. And I believe she was in the video, Under my Skin.
posted
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.
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
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. 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
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
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
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posted
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
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
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
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
"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
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posted
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, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
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!
-------------------- 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: 830 | From Mass. | Registered: Aug 2006
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Alv
Unregistered
posted
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 .
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quote:Originally posted by Cold Feet: AP, I can't believe what you've been through. I hope you grow stronger every day!
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, I�m fine� I want someone to look me in the eyes & say �tell the truth�
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
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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, I�m fine� I want someone to look me in the eyes & say �tell the truth�
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