tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I know this will come off as a morbid question and hopefully others can see past it for the sake of medical science.
I have read about autopsy's being performed which have indicated lyme disease in them or some sort of spirochettal illness, etc.
My question is, is this something that has to be requested to actually be looked for?
The reason for my question is that I know someone that had been told their loved one had passed on from heart failure. The physician put it down on the death certificate as "heart failure".
An autopsy was performed since the survivor was adamant the root cause was lyme disease and the physican said lyme didn't kill and yes it was "heart failure".
After waiting for the autopsy report, it did come back as LYME disease.
What I'm trying to find out is, IF you just had an autopsy and didn't tell the pathologist to LOOK for lyme, would they dismiss it as "heart failure" or do you need to specify that you want lyme "ruled out"?
I'm not depressed and hopefully I've worded this not to come off that way. I'm looking for FACTS and education on this topic.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, I believe you are right. Lyme is so overlooked and underestimated, by doctors and pathologists alike, I believe that you would have to specifically request it.
It is an important question, because if more people asked for this assessment in case of an autopsy, we might have more evidence of the real health effects of lyme on the heart (and other systems).
Posts: 2557 | From home | Registered: Aug 2006
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I would think with the amount of ignorance of Lyme and Co. that they would more than likely not rule cause of death as Lyme. My mother's autopsy in 1999 showed spiral bacteria in her brain tissues and the cause of death was heart failure.(This was because of recent heart valve replacement.)
Now we all know how Lyme affects the mitro valve however, I am in MO and here no one ever thinks about Lyme disease.
We did have a friend who died at 42 a few years back of mysterious circumstances and an autopsy showed Lyme as the cause of death. So, it can happen, but probably not likely most of the time.
Amy
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
There is a doctor who is studying the connection between Lyme & Alzheimers. He has studies brains of people who died of Alzheimers & found that there was Lyme present by doing DNA testing.
Medical Doctor Discusses Link Between Lyme Disease and Alzheimers on Interviews with Experts Series
Alan MacDonald, MD, talks about his research into the link between Lyme disease and Alzheimer's in the audio series 'Interviews with Experts,' on the Lyme Disease Research Database.
Lyme is sometimes misdiagnosed as Alzheimer's, as the two diseases share common symptoms. Recent research also includes the discovery of biofilms, another of the stealth forms taken by the Lyme bacteria.
The interview series provides medical experts an online platform for reaching people affected by Lyme.
quote:Originally posted by Vermont_Lymie: Yes, I believe you are right. Lyme is so overlooked and underestimated, by doctors and pathologists alike, I believe that you would have to specifically request it.
I agree.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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quote:Originally posted by AmyPW8: Now we all know how Lyme affects the mitro valve however, I am in MO and here no one ever thinks about Lyme disease.
It's rampant here in MO...and I think about it all the time!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
An autopsy would, of course, detail many things. However, the determination of cause of death seems to be pretty strict as to the immediate cause as listed on a death certificate:
" . . . every death must be attributed to a single disease, which is the immediate cause of death. . . ."
According to the federal Centers for Disease Control and Prevention, the leading causes of death among those ages 65 and over are, in descending order, heart disease, cancer, stroke, respiratory disease, Alzheimer's disease, diabetes, influenza, kidney disease, accidents and infection
. Maybe so. But that's because people are not allowed to die of old age -- at least, old age cannot be listed as the cause of death on the official documents, according to both the C.D.C. and the World Health Organization, repositories of the world's mortality statistics.
Neither should ``infirmity'' or ``senescence'' appear as a cause of death, according to the C.D.C. handbook on how properly to fill out a death certificate.
Why? Tese words ``have little value for public health or medical research,'' the agency says. Plus, ``Age is recorded elsewhere on the [death] certificate.''
Instead, every death must be attributed to a single disease, which is the immediate cause of death.
A second disease may be cited as the intermediate cause, and a third as the underlying condition.
Even in situations ``when a number of conditions or multiple organ/system failure resulted in death,'' the C.D.C. instructs that ``the physician, medical examiner or coroner should choose...a clear and distinct etiological sequence,'' a ``chain of morbid events.''
. . . .
- Full article at link.
-
[ 23. October 2008, 05:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My husband's uncle (who just passed away this week), was a mortician at one time.
He quit the business when bodies would come in with generic causes of death, like pneumonia, or cancer, but they KNEW the person died from AIDS.
This was back in the early 80s, and people were very afraid of it, and there was little protection.
So, I don't doubt that people can die from Lyme disease, but it's not shown on the death certificate. I would hope we would all make that a stipulation upon our deaths, that the cause be specified.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
it is funny to see this since it was a topic in our house not too long ago
I plan on having a directive written very soon (just waiting for a few good days to be able to sit and write it out) and I will give it to our LLMD
I will also give a copy to one of my sisters and husband (although this is not a subject that he likes to talk about = so I am not sure if he would carry out my wishes)
I want an autopsy done, and I know that lyme will be found in my brain. Then my sister can sue on my childrens behalf to our almighty insurance company (starts with an A and ends with an A - yes, Aetna) for not allowing the meds that I and my dr. know I need.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
"I want an autopsy done, and I know that lyme will be found in my brain. Then my sister can sue on my childrens behalf to our almighty insurance company (starts with an A and ends with an A - yes, Aetna) for not allowing the meds that I and my dr. know I need"
Don't mean to change the subject but...This is what I can't seem to understand. If there is so much evidence, so many positive western blots, Autopsies, etc, WHY haven't we sued before we die?
Why not a class action lawsuit? The way I look at it, we would then be forcing the doctors and insurance companies to treat us out of fear of malpractice lawsuit
-------------------- Powerful Women's Motto: Live your life in such a way that When your feet hit the floor In the morning, Satan shudders & says� 'Oh ****!...She's Awake!!
posted
My grandmother died in August..she had dementia and artheriosclerosis.
When she died we specifically asked for the doctor to do a western blot and order the mortition to check for neuro Lyme. My dad has been calling since early September and nobody will return his call.
I have a suspicion that the doctor did not order the tests done.
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
A lot of food for thought out here. Thank you for various opinions.
It sounds like it's going to be luck of the draw on who the pathologist is and if the doctor at the time of death would even believe in lyme.
I know there has been talk about having organ pieces sent for research and I guess this was just another angle that started going through my head.
Research and Awareness! Thanks to all that responded.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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bettyg
Unregistered
posted
cathy,
tincup typed a long, thorough essay about this FOR HERSELF, pretty sure it's in my newbie links. if so, read entire list of contents for it. NOPE...NOT THERE USING MY SEARCH METHOD!
or use search above!
autopsy medical subject line any date and look for tincup's member no. and type in ...
posted
Just for the record, many of the coinfections can also cause heart failure. They should be able to biopsy the heart tissue (they do it on living people) to look for pathogens. Bartonella has caused many deaths due to endocarditis (and it can also cause other heart problems), babesia is known to cause heart failure, and I know others such as Q Fever and tularemia can cause serious heart problems. Lyme cardiac deaths, to my understanding, are more frequently from rhythm disturbances which I don't think would be noted as "heart failure."
I wonder if a heart tissue sample was taken at any point during the autopsy and if it could still be biopsied -- I don't really know much about it, just speculating.
What were the symptoms before this person died?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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bettyg
Unregistered
posted
keebler, good question.
we have quite a few scientist members; hope some will happen to notice topic title and decide to read and share their expertise!
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i wasn't able to read the whole thread but i have first hand info on this
i tried to have it set up before my mom passed
it was hard-1st with family...so many of them sick with lyme but in denial...i thought it would be good info for all of us to have-she had agreed yrs ago-but her dementia was so bad at the end it didn't make sense to talk to her about it
you could get more info by searching on here tho-i know i have posted before on it
anyway-actually setting the testing up is hard too
1. a special doc has to take a brain sample (or i guess other tissue samples if you want) a special way-the regular autopsy people don't know how to do it, or what to do or where to send it...what happens to the body after death and before the tissue is removed can mess things up
2. it is expensive and you have to coordinate a whole bunch of stuff: early care, transfer, tissue harvest, prep, mailing...cuz when there is a death there is what is normally supposed to happen...you have to get that changed ahead of time-so the right person can do the autopsy the right way
3. things change-i spent days sorting it out-finally getting the familys permission-they were not happy-we thought death would come soon...and then she recovered
4. when she did die yrs later-it was unexpected
5. the docs and autopsy person had moved and were't doing it anymore...and the nursing home had changed staff so no one even knew about the previous plans
i did use ilads to help me contact who was testing brains at the time. macdonald was mentioned earlier. when my mom died he had too many brains. i had been working with another doc who studied them earlier-he worked at cdc for awhile and then in boston-i don't know what he is doing now. he was very helpful talking to me at length-i don't think i should put his name here-pm me if you want it-starts with D
for us the whole thing was a nightmare - just like testing tissue from all my surgeries has been. so many screw ups that i know about-i don't know how many screw ups there were that i don't know about.
you have to understand about pcr testing too...it's like shells in a bucket of sand. it's easy to get a shovel full of sand with no shells(Bb)...that doesn't mean there are no shells there.
it was exhausting for me-and at this time that is a lyme chore i am giving up on
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