ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
The obit does not say specifically but he was a well-known Lyme patient and active in the NC Lyme Disease Foundation. It is assumed to be from complications from Lyme, but the NCLDF was not told specifically what happened. The obit requests memorials to the NCLDF.
If I get any new info, will post. I, myself, as most of us, am interested in knowing how Lyme kills. I believe there are many ways, from cardiac, to neurological, to suicide.
Posts: 2275 | From NC | Registered: Oct 2000
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey there Miss Connie, I am so sorry to know that one of your own has succumbed to this awful illness. My most heartfelt condolences to his friends and family.
Clint, I'm also sorry that this topic frightens you...I am sure we are all disturbed by the seriousness of what these diseases can do. However, I feel you should educate yourself a bit more re: TBD fatalities before passing along false information.
Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You can use the physicians name once they're dead. Who was it? Was it the guy I reported in seeking doctors?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
quote:Originally posted by Melanie Reber: Clint, I'm also sorry that this topic frightens you...I am sure we are all disturbed by the seriousness of what these diseases can do. However, I feel you should educate yourself a bit more re: TBD fatalities before passing along false information.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I agree with Clint.
There are so many co-infections and even viruses we contract, who can say which came first and which causes death.
Before stating "died from Lyme" I would like to know how that conclusion was arrived at.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Rare is what the CDC calls it too, but the truth is that lyme is rarely recognized as a cause of death, so there is no real data. CDC is going on opinion and wish that it isn't a serious disease. Anyone who has been around lyme for a while will have seen quite a few lyme obits, and that just scratches the surface.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I am very saddened by this .. but I have to tell you as someone is afraid that she IS dying... this is very scary to read.....
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Lyme Disease has killed quite a lot of people. It is not a rare event. The proof is in the autopsy and the cultures following the deaths. We know patients are infected, and the complications of heart damage, seizures, or even just death from the overwhelming symptoms, produce these results.
Let's not even forget the enormous amount of suicides. To say the suicides weren't caused by the Lyme is a foolish thing, given we know Lyme Disease induces suicidal tendencies in a lot of patients, around 1/3rd of patients report experiencing suicidal ideation.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I guess I just want it to be a more accurate cause and effect.
For instance, I have lyme and Babesia, but I also have Mycoplasmas, Chlamydia Pneumoniae, H. Pylori.
My mycoplasma load is very high and most definitely will kill me if we can't eliminate it.
Mycoplasma is airborne. It is not transmitted by a tick. Lyme does not cause mycoplasma infection. It is just as likely mycoplasma shut down my immune system causing lyme to proliferate as it is vice versa.
Now, if I die, people could say I died of lyme disease since I have it, but they would not necessarily be correct.
I believe the babesia and the mycoplasmas pose a much more serious threat for me as they test higher. I have suffered respiratory illnesses my entire life. Mycoplasmas is the most likely culprit.
H. Pylori can kill you. Luckily it is pretty easy to eradicate, but can come back at any time. H. Pylori causes ulcers and stomach cancer. Lyme does not cause one to have H. Pylori.
That is my point. I don't think we should put one on a lyme death list unless we can prove lyme caused the death. It doesn't do justice to anyone.
JMHO.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
My take on what you are writing is that all tickborne diseases have a cascading effect. The bug stew that is injected into the blood as a person is being bitten may never be able to be separated again into various ingredients.
Therefore, I'm not sure it is possible to distinguish completely at this time, w/out proper testing abilities, what we do and do not carry once infected.
Our (and Sarah's) Lyme Memorial 'lists' do NOT only consist of patients who have died from Lyme, but rather they memorialize all patients who suffered with Tickborne diseases.
I hope that helps to clarify things for you.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I don't believe that death from Lyme is so rare. Lyme does weeken our immune system, which leaves us open for other illness too.
The coinfections are very destructive too.
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hi Clint,
Actually, if you look at the statistics of those that have died from tickborne diseases, the ages are all over the place. There is NO one age group that is more susceptible than others.
I think your assessment that death from TBDs is rare also depends on your definition of rare. I have looked, and can not find a universally accepted medical definition of 'rare death from disease' (stats wise).
I'm sure it is all relative depending on your perspective.
There is a definition of rare diseases but Lyme does not fit into that category if you consider that more than 200,000 have been infected. (Current CDC surveillance counts are 310,000+, but even they admit to underreporting by a factor of 10)
I suppose my point is... this is a grey area and no one knows all of the answers. We have some data, but not near enough to come to blanket conclusions re: the rarity of diseases that can't even be tested for at this point in time.
Forgive me if I come off argumentative for that is not my intent. I am merely trying to offer a few reasons why some previously accepted 'facts' are not always correct.
Posts: 7052 | From Colorado | Registered: Mar 2003
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Lyme screws up the immune system. All the other infections can now take hold and weaken the body further. To me it doesn't matter which one kills you. Lyme is the "ringleader" so to speak.
It's like saying "yeah he was hit by a bus, but it was loss of blood that killed him.
We must look at the effects of Lyme as a whole, just as we must look at the body as a whole.
My opinion ........... please don't harass me for it ..... but feel free to relpy in agreement or disagreement.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Lyme, in this case, entails all TBD (tick-borne infections) as it's difficult to separate them and, for many, had treatment for lyme been there, so would the treatment for the co-infections.
- one that is not likely there (that made national news for all of 30 seconds) is a little girl from Missouri who, two summers ago, died from ehrlichia.
That same year another child from either Missouri or Kansas also died from a tick-borne infection.
-------------
This is not meant to scare people, but all the articles and books recommended for reading are to help everyone get educated as to the very serious situation at hand, and of the prompt action and strict self-care required.
This is no walk in the park.
-
[ 09. August 2008, 05:49 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Connie Mac...
So sorry to hear about the patient who passed away. My prayers are with the friends and family in this sad time.
If anyone has any questions about Lyme and death, please see the following explanation, which Melanie wrote. It was beautifully done.
BTW- A couple of days ago I stopped and took pictures of a large willow tree. That was Billy's favorite. I was thinking about him and I took the pictures because, well, I guess because he was in my heart and on my mind.... and I just wanted to.
Maybe they would be nice to post somewhere?
For those who don't know the history... Melanie designed and published the Memorial site shortly after Billy passed away. I am sure he would have loved her design and ideas. They are so beautiful and expanded on a plan we originally had to plant a tree for those who passed.
Sadness hit us all when we lost Billy before we could develop his tree planting idea past the talking stages.
Unfortunately, it looks like we will have an entire forest as a memorial if we don't get some help soon. Each loss breaks my heart.
Thank you Melanie for your gift to all of us. It means so much and it comforts me and so many others.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Melanie,
I don't receive your post as argumentative but rather informative. Yours is the first I knew of mycoplasmas being transmitted by ticks.
Since my illness advanced into rheumatoid arthritis and since Lyme, Mycoplasmas and Strep are 3 bacteria found in synovial fluid of RA victims and long believed to be instrumental in setting off RA and other auto-immune illnesses, I have researched all three a lot.
Never before saw mycoplasmas as being transmitted by ticks. Even today when I again googled it, I found many, many websites stating you are infected by the following quote:
How is mycoplasma spread? Mycoplasma is spread through contact with droplets from the nose and throat of infected people when they cough and sneeze. Transmission is thought to require prolonged close contact with an infected person. Spread in families, schools and institutions occurs slowly. The contagious period is probably fewer than 10 days and occasionally longer.
END QUOTE:
It took some work to find articles relating mycoplasma infection to a tick but there are some out there. My head is spinning from the research.
Interesting that after 2 yrs of taking minocycline and doxycyline and azithromycin, recent bloodwork shows I am highly infected with mycoplasma pneumoniae. Normal range <.90 Mine results >5.00. I've got to find another way to knock these fellows out.
Since they reside in our cells, I'm thinking the photon light therapy may be effective. It is proven to bring energy to the cells by way of light. It is proven to improve mitochondrial activity which will bring about cell death to the infected cells.
In any case, thank you for your post. It gives me more to investigate.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I'm so sorry to hear about another loss. I feel deeply for the kids - 10 and 5 years old - what a terrible, tragic loss for them.
I also wanted to say that when I think of deaths occurring in people infected with Lyme and other TBDs, I often think of it like HIV-related deaths.
For years, before becoming ill, I was involved in supporting HIV patients. When an HIV patient dies of PCP (pneumonia, an opportunistic infection common in HIV patients), it was commonly accepted as an HIV-related death.
I think of TBD related deaths in the same way. While it may or may not be Lyme or another TBD that is the direct cause of death, the TBDs are the enabling factor that paves the way for other problems.
Especially for those of us with long-term infections, this has impacted every part of our bodies, and has compromised our immune systems.
I don't mean to sound frightening, but I do think this is one of our realities when faced with Lyme and TBDs.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Thanks Connie, for sending the information and for beginning this discussion. I realize it is a difficult one...ripe with controversy...but in my opinion, it is a necessary one. Long standing myths on this subject need to be dispelled.
Thanks to each of you for sharing your opinions, they are always valuable.
Clint and Unexpected- please try not to despair. Learn all that you can, as you are able. Dealing with this is a process. While it is life-changing, it does not have to steal away your life. Believe you will improve and then do everything within your power to reach that goal.
Luvs- some mycoplasma is airborne, so that may BE how yours was acquired. Truth is we may never know. I wish you all the best in your continued healing.
Cactus- thank you for the HIV analogy. I feel the same way.
TC- many thanks for the very kind and encouraging words. Your sentiments, along with the gratitude received from friends and family of those who have passed, keep me going.
Keebler- the little girl from Missouri is Ellen Cary. She was 7 years old...and yes, she is included. Her parents directly requested it of us. 3 months later, Ehrlichiosis claimed Emily Powell as well. She was 15.
Robi and Sunshiny- I agree completely, thank you.
Blue, Too and Lou- thanks for adding your perspectives.
Posts: 7052 | From Colorado | Registered: Mar 2003
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
quote:Originally posted by robi: Lyme screws up the immune system. All the other infections can now take hold and weaken the body further. To me it doesn't matter which one kills you. Lyme is the "ringleader" so to speak.
It's like saying "yeah he was hit by a bus, but it was loss of blood that killed him.
We must look at the effects of Lyme as a whole, just as we must look at the body as a whole.
My opinion ........... please don't harass me for it ..... but feel free to relpy in agreement or disagreement.
robi
Well said, Robi. No doubt I would not have Epstein Barr if Lyme wasn't living in me, suppressing my immune system.
Lyme and the horrible, sometimes risky treatment we must endure, causes long-term damage to our bodies. We can never get rid of it, so it will take it's toll over time. Those of us who are lucky enough to keep it in remission for long periods can at least live a quality life. But I see many who live horrible lives of disability. I consider myself lucky at this point, but who knows what the future holds.
Posts: 2275 | From NC | Registered: Oct 2000
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bettyg
Unregistered
posted
when i read the beginning, my thoughts went to newspaper obit which is in the paper shortly after the death....
died from complications of lyme disease, etc.
many autopsies take quite awhile to rule out things, and some newspaper DEMAND what they died of in it....so example, this was put in there either REQUESTED BY LYME PATIENT DYING or their family members wanting it known.
example, my 40 yr. old sis-in-law died from EARLY ONSET-ALZHEIMERS in 1993. Brother had her body taken to mayo clinic in minn, and they kept her brain to do testings on.
it took 4.5 - 5 months to RULE EVERYTHING ELSE OUT; yes, it was AD based upon tacks and planquels...been so long since i've typed that ... not sure i used right terminology!!
just my perspective on this...
i know when i die, i want my OBIT TO SHOW COMPLICATIONS OF LYME DISEASE....
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.. but I have to tell you as someone is afraid that she IS dying... this is very scary to read.....![[group hug]](graemlins/grouphug.gif)
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