quote:

---

Originally posted by stymielymie:


s that whaT the future
has in store for us?????????????

i know most members on off topic are past that point but some of us others.
what does fate have in store for us in the
future?????????

any research on this please pm me

docdave

---

Stymie Stymie Stymie-what are we to do with you?

Life is Terminal. Well- Life on Earth is Terminal.

I want my headstone to read-

I lived long enough
to learn a lot of stuff.
This grave in the Earth
Is but a new Birth.

Cobby
 

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Posted by sometimesdilly (Member # 9982) on :
 
i just finished reading the most relevant chapters of "POX," a book about syphilis and how it affected (ok, killed) a selected handful of various geniuses.

i highly recommend the book- the parallels between everything syphillis and everything Lyme are amazing and yes, extremely disturbing (including symptoms, false negative tests, medical controversy, ducks- the list goes on and on).

but, if accurate, what the author states about the long term prognosis for those with syphillis in this era is vaguely reassuring, at least if you can see glasses half-full.

supposedly abx CAN halt the progression of syphillis- they just can't reverse any of the damage that disease caused before tx began.

so maybe the case is that some pre-tx damage may lead to death, but death is not directly related to active Bb et al. or whatever.

still waiting for the water glass to fill up, dilly
 

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Posted by Lymetoo (Member # 743) on :
 
So do they test people for syphilis anymore?? Surely it's still around?

Carol...I like the headstone idea!
 

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Posted by sometimesdilly (Member # 9982) on :
 
tutu, syphilis is still around-- and in fact is beginning to make a comeback here and there in the US, especially in NYC.

the more things change, etc....

dilly
 

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Posted by merrygirl (Member # 12041) on :
 
My doc did a syphillis test on me in the begining. It was negative. Also in the state of MA a woman and a man need to get tested before they wed. I assume it is the same for same sex marriage although I am not sure.

I was tested before my wedding license was issued 6 years ago. I think we are the only state or one of the few that test for it.

Isnt it a sexually transmitted disease??

cobby I like your post. It is a good way to think.

I also think that when someone is given a Lyme/Chronic Lyme DX wether it be a llmd or not, They should be warned about suicide feelings that come with it especially during a herx.

I can say I did contemplate it, or at least that I would have died already (mostly in the beginning) I am doing much better lately I think mostly because I have learned more.

Sorry I am rambling now... Melissa
 

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Posted by just don (Member # 1129) on :
 
Doc Dave asked "Will chronic lyme be terminal?"

Not if you dont die,,,and your NOT allowed to do THAT!!!terminally--just don--
 

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Posted by Carol in PA (Member # 5338) on :
 
I've had some people say to me, "Well, at least Lyme won't kill you."

My answer is "Maybe not, but it'll keep me miserable until I die."


Carol
 

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Posted by Blackstone (Member # 9453) on :
 
Syphilis and Lyme have some parallels, but they have many more differences. Syphilis has a very predictable progression pattern and symptoms (sores and the like). It also does more verified "direct" damage to the body in the "third stage" neurologic format. However, up until that form most cases treated for a relatively short time with conventional antibiotics are remedied with no lasting issues

That said, Chronic Lyme has such a wide amount of severities, links, and presentations. The short answer, is probably "No". Nobody will ever say "This man died from chronic lyme". However, there is the possibility of links to other conditions such as Alzheimers, Non-Hodgekins Lymphoma, and Cardiac issues. Cardiac issues are the most accepted theory that directly link a fatal event to lyme. I believe there was a young athlete in Florida who died of a heart attack, caused by lyme.

So it may be "This man died of XXXXX, brought on by chronic lyme".

Of course, not every case of the above ailments is lyme, and not everyone with lyme gets one of those ailments.
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

---

Originally posted by merrygirl:
I was tested before my wedding license was issued 6 years ago. I think we are the only state or one of the few that test for it.

Isnt it a sexually transmitted disease??

---

yes, ALL the states used to test for it. [My husband and I were tested prior to marriage....a hundred years ago.] I heard recently on the news that most states no longer require the test. Go figure!
 

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Posted by Lymetoo (Member # 743) on :
 
wotm....There is a difference between hyrdocortisone and prednisone. Are you sure you're not talking about Cortef, or hydrocortisone?

Prednisone will only make Lyme disease worse. It also weakens bones so that the vertebrae begin to break down, causing severe spinal pain. I'm not going there.

Cortef, on the other hand, can be very useful to Lyme patients in low doses if their adrenal glands are not working well.

I think mainstream drs are much more FREE with the steroids than they are with antibiotics!!!

I hope you will continue the IV as long as is needed to get you into remission. Don't expect it to happen in 6 months. It may not.
 

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Posted by Health (Member # 6034) on :
 
Yes, lyme will slowly kill us if we dont take measures to kill it AND

to get rid of any chronic stress, the stress that makes you sick, not the happy stress once in awhile.

I was NEVER this sick until I moved in with family to get well because I had developed severe MCS, and i did not react to their house.

I still have stress here, and I truly believe that if i dont get out, I will die from lyme.

I was strong and able to fight lyme before I came here, it took about 2 years for the chronic stress to near killl me. It is a little better now,

but there is still the stress here, living with family.

I believe that we all have to take a look at our lives, and get rid of what is weighing us down,

if nothing is weighing you down, then that is great.

I believe, that lyme will kill us, slowly, some of us anyways,

I was SO strong before living with stress, I was so strong, get rid of the stress, and maybe you are ok, or maybe you just will die from it.

I will, I know it. if I have stress in my life,

bad stress.

Trish
 

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Posted by kelmo (Member # 8797) on :
 
Boy...you're not giving me hope to share with my 19 year old daughter!
 

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Posted by stymielymie (Member # 10044) on :
 
fyi:\
coroner's reports do not mention any disease process the person has,has.

cancer, aids, lyme, ms are not in a coroners report and hence not the cause of death.

coroners report mention the actual cause of death
heart failure, kidney failure, etc.

people don't die from cancer, but from the system breakdown of cancer.

and yes syphillus is increasing exponentially worldwide.
so we can outlast lyme!!!
or will symptoms progress.
i do believe that even if "they" find a cure
we will never recover completely from the
system damage.many will disagree, but if
your heart is damaged"i have mitral valve prolapse" and it ain't getting better
even with a cure.
docdave

[ 07. September 2007, 06:39 PM: Message edited by: stymielymie ]
 

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Posted by cbb (Member # 788) on :
 
Kelmo,
Please don't be discouraged by the responses.

I've heard that the younger the Lyme patient, the better the prognosis because the younger immune system is stronger.
Also, Lyme is similar in all patients, but yet it is different in every patient. Each case seems to be unique.

My father was misdiagnosed with Alzheimer's.
The Lyme diagnosis came so late and our family knew almost nothing about LD in 1992. Because of so many problems (mainly our lack of info & the LLMD was in NJ), we stopped treatment. Several years later, my father died of Lyme complications at the age of 85.

A few years ago, my grandson was diagnosed with LD at the age of 12. Dr J in CT patted him on the knee and said "Son, you're fixable, but it's going to take time." We believe he was 7 yrs old when he got Lyme.

As long as your daughter is getting adequate treatment, her prognosis should be good.
 

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Posted by Aniek (Member # 5374) on :
 
I had Lyme 17 years undiagnosed. I had a lot of pain during that time, but I was basically healthy. No signs at all that my body was being killed.

Of course if Lyme causes heart damage or severe encephalitis in a person, that could be life threatening. Of course there are people who's systems have been weakened so much.

But the majority of us will not die from Lyme or Lyme complications. The important thing is to remember to do whatever you can to make your body healthy.
 

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Posted by treepatrol (Member # 4117) on :
 
Morbid topic Dr.
I think if you keep treting and switching abx's out every 3 or 4 months for as long as it takes you win.
The cyst and coccoid forms are the hardest to eradicate.
Eventially every cell in the body is replaced every (memory) 16 months. They have to get out in the open sometime.
Eat right drink lots of water take suppliments and some sorta exercize .
And mostly Prayer
 

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Posted by 6t5frlane (Member # 8628) on :
 
I would imagine that some can No longer take it. Take for example the guy from the band Boston. Had chronic Lyme I'm told and commited suicide.
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
Yes and no.

Depends on the person. Many people in my local group- almost ALL_ can go off abx without declining dramtically IMMEDIATELY- I decline dramatically IMMEDIATELY- have VISIBLE symptoms- bright red swollen hands- if I miss abx for ONE DAY-

I am death watch Lymie, how I think of the ALSers and people like me, tertiary people-

We are the ones who will die before our time I think-

I think everyone else will have normalish spans, I think we are mixed in with gen pop stats already because it is so widespread- so we define normal almost-

I have done http://www.angelfire.com/planet/lymedisease/Lyme/Memorial.html The Lyme Disease Memorial Page for 8 years and there are death trends-

there is a bunch of deaths in early 50's to 56. If I make it to 57 I will be okay is the way I feel*)!*)*!)! From 50-56 I am going to be a little nervous!*)!*)! I believe there are a lot of those unexpected early deaths that are Lyme in the gen pop- in those years- and then won't worry until I hit mid-70s!!!

and there are quite a few people pretty young dying in their sleep- so just don't sleep!

Simple*)!*)!!

I know a lot of people in my community though and it has been intersting that out of my local church, I only know one person who has died, from work communities, one person as well, from AA which I am familiar with thorugh my profession as a drug.alc counselor, a few people before old age but undertstandable correaltion to mortality there- but out of our local support group- from mental health community also a population I have worked with a few suicides but agian I worked with worst population for that the severely mentally ill and suicidal-

but from our lYME group-

Terri - RF fever & breast cancer -
Al- heart (2 ALs, both heart problems,NOT HWI Al)
Irving- complic from hospital overdosing his meds
Isa Dempsey- "natural causes"
Dillon- suicide

So 5 people from our Lyme gorup haev died in the past few years- more than any other group of people I know- but Irving was in his 80s (he was a former land surveyor in New Jersey who had every TBD!) and Isa was 75- Terri 61, Dillon 37, AL in his 50s-
 

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Posted by treepatrol (Member # 4117) on :
 

quote:

---

Originally posted by 6t5frlane:
I would imagine that some can No longer take it. Take for example the guy from the band Boston. Had chronic Lyme I'm told and commited suicide.

---

The Boston Band what was his name?
Yeah the pain is brutal sometimes and the money drain seems like no end in site . But you have to have faith.
 

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Posted by Lymetoo (Member # 743) on :
 
Thanks for making me nervous, CALyme! I'm 56 yrs young!

[ 07. September 2007, 09:25 PM: Message edited by: Lymetoo ]
 

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Posted by lou (Member # 81) on :
 
People come here for support and honesty and deserve to be able to discuss bad outcomes just as well as success stories. If you think this is discouraging and morbid, don't read the thread. Some of us are going to die from lyme, and I am going to be one of them. I would like to be able to discuss this without other people assuming it is not valid for the forum.

Go read success stories threads if you need encouragement. There definitely can be a range of outcomes.
 

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Posted by sometimesdilly (Member # 9982) on :
 
ditto what you said, Lou. i hope the conversation that DocDave began here will go on here.

dilly
 

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Posted by Lymetoo (Member # 743) on :
 
.

[ 07. September 2007, 09:27 PM: Message edited by: Lymetoo ]
 

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Posted by Cobweb (Member # 10053) on :
 
Death, Dying and the Terminally Ill-this actually is a subject very close to my heart.

When my little girl, Suzanne , had a brain biopsy at age 4 she was diagnosed with a Degenerative Brain Disease. Prognosis? perhaps she would live until she was 5 to 7 years old they told me.

When she was age ten and I was holding her on my lap because she could no longer walk, the doctor walked in as I was singing "Do you know the Muffin Man?" to her.

"That's why she's still alive," he said in response to Suzanne's laughing and tapping my hand-love, touch, music can make all the difference.

That's when I realized- I could not change the course of her disease-she still went blind, could not eat, was eventually fed by g-tube, incontinent, bedridden-but I also realized I could still make a difference in her life.

I held her and sang nursery rhymes to her until she was 22 years old. When she was no longer able to smile or laugh, I knew it was time to let go. I told her not to worry-God would take care of her.

I believe with her last breath on earth she danced her way up to heaven with a song in her heart.

She told me to pass this along:

Click on the following link:
http://www.bluemountain.com/view.pd?i=172865792&m=6876&rr=y&source=bma999


Carol
 

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Posted by lou (Member # 81) on :
 
I am very sorry for your loss and think silliness and humor are a way of staying sane in really bad situations. However, could you please take it to another thread? I am not finding anything humorous about this and don't want to hear any joking. It makes it feel like no one gives a hoot. It is better to joke about your own situation, not that of others.
 

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Posted by Cobweb (Member # 10053) on :
 

quote:

---

Originally posted by lou:
I am very sorry for your loss and think silliness and humor are a way of staying sane in really bad situations. However, could you please take it to another thread? I am not finding anything humorous about this and don't want to hear any joking. It makes it feel like no one gives a hoot. It is better to joke about your own situation, not that of others.

---

The above post was in fact an effort to bring my comments back on track and speak directly to the issue of death, dying and being terminally ill.
Please direct me to a more appropriate thread. Thank you.

I will go back and delete any humorous comments in it even though they were also directly related to my own situation and no body elses.

Carol
 

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Posted by bettyg (Member # 6147) on :
 
dave, good topic; interesting comments from everyone. leaving in 5 minutes; no time to write now, but having my post here, i'll know where to start reading again without rereading ALL comments! neuro lyme at it again. bettyg
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
Carol, Do you have a photo online??
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
I think it is really common for peopple to react to serious things with humor and or laughter. SOme people laugh hysterically when told family members have died. I think we need to all try & be accepting of each other here.
 

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Posted by lymebytes (Member # 11830) on :
 
If you read the Hope to Heal Lyme conference notes, LLMD's tell us that the number one cause of Lyme Death is suicide. Another LLMd mentions, this route holds no hope of getting well. (Obviously).

Death is a part of life we all have to face, it isn't morbid to discuss it is fact. I think it is only morbid if you have no belief system i.e, like this life is all there is.

Personally I think Lyme is responsible for many more deaths that we could even imagine. One could have a heart issue and die from it or Alzheimers, Parkinsons, ALS or a million other death sentence diseases. But my question is where did it all start? Could it be that Lyme, especially undiagnosed, is the cause of all death? Could cancer be caused by Lyme? So little is known about this bacteria except one thing, it is unbelievably tough and destructive.

Who knows really how far and wide and how many people on this planet have this bacteria in them. Not everyone is sick of course, but we dont' even know for sure all the modes of transmission and the ones we are aware of,congenital, organ and blood donations, all biting insects,sexually, leaves out very few people.

200,000 Lyme Disease cases (according to the CDC) went unreported in 2006. At this rate, considering a cure is never found, in one hundred years everyone is the US will have it. I think the numbers are conservative and some LLMD's believe 1/2 the U.S. already has Ld, though they may not be symptomatic.

The best response was given by Cobweb, is "life is terminal". We all are dying from the moment we are born, none of us knows for sure what will kill us. We could have lyme and be hit by a bus. There are many ways to die, eventually one of them is going finish us off.

I have no fear of death, having Lyme gave me that strength.

I worry more about the damage this bacteria creates in the human body and if we do get well, the damage is done.And like Carol said live in agony until we die. Wouldn't that be awful to live to 80 in this condition -no thanks!

I like what Daryl Hall said in his interview, "You can die from it and if you don't you hope you will!"

Living with LD is no picnic and I hope for remission like everyone else and to get back to the life/health I took for granite, until it was gone in an instant.

But for now I try to be thankful for everyday, each moment no matter how painful. Having this disease has taught me compassion and to stop and smell the roses, life is short.

We all have our cross to bear, I wonder what is going on at the Luekemia boards, cancer boards and autoimmue boards right now, do you think they are hoping their "illnesses" don't kill them? Hmmmmm....

[ 07. September 2007, 04:43 PM: Message edited by: lymebytes ]
 

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Posted by Cobweb (Member # 10053) on :
 

quote:

---

Originally posted by cave76:

I hope no one gets offended by either coping mechanism.

"Life is a Pathogen"
--cave76 circa 2007

---

quote:

---

Originally posted by CaliforniaLyme:
Carol, Do you have a photo online??

---

sending PM
 

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Posted by Cobweb (Member # 10053) on :
 
I think if there was a definitive answer it would have been stated by now-and has been to the best of lymenetters' ability.

Seems like a good question for all of us to ask our LLMD's straight up. Who has the next doctor's appointment?

My daughter's is Wednesday Sept 12th. Other than words straight from the LLMD's mouth-all I can offer is speculation.

Carol
 

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Posted by Cobweb (Member # 10053) on :
 
Here's a cool website I found while googling Lyme and Terminal Illness:

http://www.hopeismyanchor.com/Lyme.html

Carol
 

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Posted by Cobweb (Member # 10053) on :
 
Here's another reference I found to help children cope with the stages of Lyme Disease.

We Don't Sit in the Grass Anymore
by Diane Wilcox
Alex knows there is something wrong with her mom, and it all started with a strange bug bite. As the months pass, her mom gets sicker and sicker, but doctors are of no help. When things begin to look hopeless, they learn her mom has Lyme Disease. ``We Don't Sit in the Grass Anymore'' is a true story told from a young child's perspective. It clearly shows how a child's life is turned upside down when her mother becomes seriously ill. The author, an Educational Psychologist, uses a picture book format to teach children about the stages of the disease.

I haven't read the book-so I do not know how it ends.

Carol
 

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Posted by Cobweb (Member # 10053) on :
 
Here's the most direct answer I have found to the question-Will Chronic Lyme Be Terminal?

Yes-but not for everybody.

Prognosis of Lyme disease


Prognosis for Lyme disease: Most individuals with Lyme disease respond well to antibiotics and have full recovery. In a few patients symptoms of persisting infection may continue or recur, requiring additional antibiotic treatment. Varying degrees of permanent joint or nervous system damage may develop in patients with late chronic Lyme disease. In rare cases, death may occur. (NINDS) Neurological Sequelae Of Lyme Disease Information Page: NINDS)

Mortality rate for Lyme disease: Lyme disease is rarely, if ever, fatal. (Source: excerpt from Questions and Answers About Lyme Disease: DVBID)

Complications: see complications of Lyme disease


▲TopAbout prognosis:
The 'prognosis' of Lyme disease usually refers to the likely outcome of Lyme disease. The prognosis of Lyme disease may include the duration of Lyme disease, chances of complications of Lyme disease, probable outcomes, prospects for recovery, recovery period for Lyme disease, survival rates, death rates, and other outcome possibilities in the overall prognosis of Lyme disease. Naturally, such forecast issues are by their nature unpredictable.
 

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Posted by Cobweb (Member # 10053) on :
 
I brought the topic Lyme Disease Obituaries to the top in General Support.

If I knew how to move that thread to here, I would, but I have not evolved that much as a poster.

I believe it specifically addresses the fact some people do die because of Lyme Disease.

I personally hope in my case it is not terminal, although sometimes I feel that way.

Carol
 

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Posted by northstar (Member # 7911) on :
 
I dont think there is an answer because treatments are still being developed.

Also, the disease itself has ever widening parameters that are continually being revealed.

And even if they did have a study......somehow.....there still would be variability within the data.......so one still wont know.

There is too much variability in the obit pages to give a definitive pre-mature death sentence for tbd's. Some of these people lived to mid 80's. The problem here is that is way far off for someone in their 30's, but if you are in your 60's +, that is just around the corner.

However, I do believe (not science) that the beating the body takes will take a few years off of a lifespan, even with long term abx.

Dave, it sounds like you are floating through some choppy waters right now. I do recall you are back on meds again.

I hope you are able to read spiritual books, and be inspired by others who have felt this same fear. And find what carries them. These books focus on quality of life, not quantity.

Possible hint: let your rational mind lead you into your heart.

I think we sometimes get just tired of trying, and just plop down, looking for a miracle to give us back our innocence.

We constantly look for any sign of improvement and stability that will guarantee tbd's are a thing of the past. And that our innocence is intact.

But we will never know the future, with tbd's or anything, plain and simple, in my opinion.


North.
 

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Posted by stymielymie (Member # 10044) on :
 
ok folks: i did not mean to start arguments.
this needs to be a logical and meaningful
discussion.
i deleted my humor,its gone also, so we can continue with my question.

lyme is extremely agressive in people that a genetically disposed to the disease, as in
cancer. there is always a gene that changes for the worst.
in lyme it seems to be the hla-dr4 gene that prevents treatment cure.

i have been around here many years and talked about many subjects, but this one concerns ME
AND MY FAMILY.
 

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Posted by Health (Member # 6034) on :
 
If lyme wont kill, then I have something
e
 

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Posted by sometimesdilly (Member # 9982) on :
 
docdave-

i spoke recently with my LLMD about lack of progress in tx and a connection to HLA.

I'm pretty sure he thought that that HLA was a major factor for those with primarily arthritic expression of the disease,not so much for those with neuroborrelia, so there is even variation there.

i'm sorry this question is hitting so close to home for you. I'm thinking it does as well at whatever level for many of us. I know for me it is not a matter of losing faith or hope to ask the question, but a practical matter and a matter of fact question.

there is no arguement going on here.

dilly
 

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Posted by Lymetoo (Member # 743) on :
 
Lyme obituaries:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=016292
 

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Posted by Cobweb (Member # 10053) on :
 
Thanks Lymetoo

BTW- you might want to go back and look at some of your posts in this thread-they are looking a bit silly- and way out of context- but oh it feels good to laugh.

On a more serious note-
If my Picc line were to become infected-would the cause of death be Sepsis, or Lyme disease ?

Carol
 

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Posted by stymielymie (Member # 10044) on :
 
ok folks, this happens to be an important issue with me.
i have delated my little joke so back to my question.

can chronic lyme eventually kill you,
my answer would be yes. i'm sorry but i do believe, in chronic lymies that enough systemic
damage is done. even with abx treatment, which
i also question, and will discuss, damage will still occur. these are killer cetes.
they hide in your tissue waiting to prounce
on you when you feel do and out.
they are smart critter, changing their cell walls to hide from our immune system.
even killing them with abx, does damage to our
immune and nervous system with their toxins.
they are like little snakes, bite you and
you die slowly by the venom they release.

now my theory on abx, and don't shoot the chef.
I do agree, being a dentist, with a good knowledge of phamacology that long term abx is NOT THE ANSWER.
KILLING BACTERIA SHOULD TAKE NO MORE THAN 2 MONTHS, 2 MONTH CYCLE OF BB.

LONG TERM ABX, PLEASE DON'T SHOOT ME,
IS AS DAMAGING TO THE BODY AS BB.
long term abx kill norma flora, correct.
norma flora is needed to keep our body running, digesting, detoxing, urinating.
without normal flora, and sorry folks, probiotics
don't work long term, our body turns into
an incredible trap for dormant and outside diseases.

i have been saying for years, and betty also,
you must treat yeast to get back you normal flora.
more probiotics won't do that.the body
must do this.
superinfections are an overgrowth of either normal flora or bacteria in foods that can actually kill you, even on abx.

who gets ecoli and salmonella infections, not healthy people , people that are sick and dedilitated, like everyone here.

who gets sick with west nile,herpes, shingles,
ebv,cmv, us people with little or no immune
system.

to prevent this i would recommend what i have been experimenting with for 4 years with good success, but must be approved by llmd.
antivirals,antimalarials, antiyeast, and
antifungal.
yes all yeast are fungi but not all fungi are yeast. mushrooms are fungi.

ok now for the kicker:
many of us will never get better,
why????
because we have genetic marker( hla-dr4)
that predispose us to not being able to be cured.
i am one of these, and that is why i go up and down into remission, but never cured.
hla-dr4 is a genetic marker that tells the body,
body you will get arthritis at age 45.
but it also tells the body, oh we have ra,
so now don't cure it.

so now back to the question again.
yes some of will die from lyme, and it will shorten our lives.
others will go into remission even cured great
some will get hit in a car accident and die.
our lives and future can not be predicted at
this point in science.

will some suffer, yes.
will some commit suicide, yes
will some be miserable till they die, yes
will lyme kill us? not everybody but some
will die from complications that damage the body
from the lyme and co's in our bodies.

just for some peoples information about me.
i played tennis today for the first time in 2 years.
i took 2 doses of doxy and the pain went away.
i have decided along with my doc, that
i want to treat my lyme like a cold.
when i feel good, i don't want to take abx and herx and feel worse.
i would like to take abx for 7-10 days then stop.
it has been working for about a year now, since i went on vfend, acyclovir and doxy for 10 weeks.

so i feel great today.
tomorrow at this point i don't care, i felt good yesterday and today.

each day shall pass and will take what it brings
with it.

love all

docdave
 

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Posted by northstar (Member # 7911) on :
 
OK, the question really was about arthritic presentation with HLDR4.

Someone here had that. Do a search for the term. She was working with some immune stuff or anti inflammatory type treatments. Very vague memory here.

North.
 

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Posted by Health (Member # 6034) on :
 
I had found that some with lyme have no idea how sick others are with lyme. I actually had one
lady tell me
to stop being so dramatic when I said I was so scared because I was getting sick again despite treatment, and felt that if I did not recieve the proper treatment I was going to die.e

This woman had lyme herself and was on the Salt
C. This woman shou
 

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Posted by northstar (Member # 7911) on :
 
OK, so it is not just about the hl..4...etc.

It is also about the effects of abx, and the unending recovery period for the digestive system, and need for exemplary diet.

I believe that is why some drs. pulse...just a few days a month or more. It allows time for immune to rebuild, and also treatment to heal and replenish gut.

Gigi has found a non abx way for her situation. Scott is on the way.

Ultimately: how do you rebuild the gastro system if you stilll take even occasional abx?

I read it takes over a month of probiotics for just a few days of abx. Some concentrate on greens and multiple sources of enzymes (for when the enzyme system was compromised by disease processes, not just abx).


North.
 

---

Posted by Cobweb (Member # 10053) on :
 
Perhaps we should all assume Lyme is a terminal illness so we won't have any regrets...

If I Had My Life To Live Over
by Erma Bombeck
The following was written by the late Erma Bombeck
after she found out that she had cancer.


If I had my life to live over, I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained and the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have sat on the lawn with my children and not worried about grass stains.

I would have cried and laughed less while watching television - and more while watching life.

I would have shared more of the responsibility carried by my husband.

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would never have bought anything just because it was practical, wouldn't show soil or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."

There would have been more "I love you's".. More "I'm sorrys" ...

But mostly, given another shot at life, I would seize every minute... look at it and really see it ... live it...and never give it back.


� Erma Bombeck
 

---

Posted by sometimesdilly (Member # 9982) on :
 
Lyme ed- I'm sure that's accurate for many, maybe (and hopefully) even most of us.

but i don't think it is true for all. what about those of us who went untreated or undertreated for years and who essentially don't improve with tx?

i went off abx for 2-3 months because i saw so little improvement and felt toxic; going off seems to have sent me not only back to start but somewhere far worse. being back on abx seems to have stabalized me thank God, but to where i was- back at start. maybe some of us, even those with just-fine HLA, are somehow moore tx resistant for whatever reason? i don't think anyone knows any of any of this for sure.

doc, i hear what you are saying about long-term abx. dr. fallon seems to be increasingly skeptical about their efficacy long-term as well, which is pretty sobering.

i imagine though it will take a very long while for any consensus to be reached about how "long-term" is defined, or any other aspect of a standard tx regime for chronic Lyme, if ever that that day comes.

dilly
 

---

Posted by CaliforniaLyme (Member # 7136) on :
 
People with Lyme die of Lyme, yes.

ANoxic encepahlopathy!!! Seizures!!!
Heart failure!!! Falling asleep forever-
 

---

Posted by Lymetoo (Member # 743) on :
 

quote:

---

Originally posted by Health:
going to die.e

This woman had lyme herself and was on the Salt
C. This woman shou

---

quote:

---

Originally posted by meg:


I think though that it all boils down to one thought.....If you think you're going to die, you will.

---

Suzanne's whole life I prayed for her to live. I wanted her to live for my sake. At one time in her illness I told someone I didn't know how or what to pray for anymore, I was confused, she didn't seem very comfortable.

They told me to pray for what was best for her.
Still she made it through that particular medical crisis. Finally in the end...

when I knew I had exhausted everything within me to make her comfortable, I told her it was all right to go , to go be with God. I didn't want her going back to the hospital or into a hospice facility where someone else besides me would be taking care of her.

I told her that I knew all these years I had been asking her to live, but on that night I was asking her to die because God was the only one I trusted to love her as much as I did.

She died within minutes. She looked so peaceful. I bathed and cleaned her myself. Removed her feeding tube. Brushed her dark curly hair. Held her and sang to her one more time.

Friends and family standing around quietly in the darkened room. Sobbing with me as I am sobbing now. Then I placed her on the gurney, straightened her clothes, covered her and she was wheeled out to the hearse.

I thought I was going to die,too-but I didn't.

I guess it really doesn't matter to me if Chronic Lyme is terminal or not. God is the strong one in my weakness. I just keep showing up and hanging my IV.

I realize other people may have a different take on their mortality or immortality. Live and let live.


It has taken me a long time to be able to laugh again-so I do it every chance I get. Feels good.

Carol
 

---

Posted by adamm (Member # 11910) on :
 
My grandmother was exposed to Bb on two occasions. Only

after one of these did she receive any form of treatment.

She now, although she has none of the other symptoms lyme can

induce, issuffering from an Alzheimer's-like dementia.

She has lost to lyme virtually all that made life worthwhile to her...
 

---

Posted by bettyg (Member # 6147) on :
 
DAVE,

have you been taking anti-fungal spray for your nose? I've been on this for last 1.5 years. I don't see any difference at all.

yes, i feel like i will die from the many complications of this ... a heart attack or stroke! it won't be my diabetes 2 or sleep apnea that gets me .... LYME will.

many of you have expressed yourselves on how i feel so i won't go into that again.


this also bring up another thought for me. LYME DISEASE RESEARCH CENTER AT COLUMBIA UNIV. they had mentioned AUTOPSIES in their web site from day one.


i want to see that become effective where they start studying lyme disease patients who have passed from it/other complications so they can begin to learn more about lyme !


i don't understand why nothing has or is being done on this important topic ... lyme research of lyme bodies.


carol, thanks for sharing your deepest agonies of losing your children; here your daughter!

my husband has never recovered from the loss of his 3-yr. old daughter, Kim, who died of a smallpox vaccination going into her system killing her shortly thereafter.

thanks tutu for bringing obituary link over here; i was going to when i got that far tonight.
 

---

Posted by Tincup (Member # 5829) on :
 
Meg said..

"I think though that it all boils down to one thought.....If you think you're going to die, you will."

But...

If you think you won't die, you still will. Right? But I do understand your point.

All of our efforts won't prevent death. Eat healthy, exercise... and die anyway.

Me? Right now I'm living and dying in three quarter time. (Thank you Jimmy Buffet)

I know Lyme will be the death of me.. unless I have some other thing happen unexpectedly. I know Lyme has shortened my life.

But for some reason I don't care.

I honestly don't know why. I guess I should care? Maybe later I will? But for now.. it's ok.

When you think about it... you can't have a 20 page symptom list and not expect your life to be shortened. What I am going for is to try to keep some good days along the way to have some more fun.

But if it all ended tomorrow... I can say I had a good life and it's ok. I was lucky. I did so much while I was young.. almost as if I knew I wouldn't make it to a retirement age.. and I lived 10 lives before I turned 30. They were good too.

Two of my favorite quotes..

Some of it's magic,
Some of it's tragic,
But I've had a good life
All the way.

and..

I will pass this way but once. Any good therefore, that I can do, let me do it now for I will not pass this way again.

Maybe it is just that I've accepted death as a part of living? Maybe it is because I've wanted to die before and thought I would die.. but didn't?

Maybe it's because I remebered this saying..

"If you want to hear God laugh... tell him your plans."

No one.. healthy or not.. rich or not... smart or not... can predict their own death and the exact cause.. and stop it from happening if their time is up... unless they plan to kill themselves.. and sometimes that doesn't work out.

Will we die from chronic Lyme and complications? Yes, of course we will.. unless something else gets us first.

Some folks want to know the sex of their baby before it is born. Some don't. My guess is those who would want to know.. like me.. can be more comfortable with knowing what will cause their death. Those who don't want to know the sex of their baby may sit on pins and needles and be unsure of the end.

I kinda think death will have it's good points. Like I'll never have to wash dishes again. My head won't ever hurt again. No scrubbing floors or taking out the trash.

OK.. I'm done.

I do hope everyone can be at peace with the process.
 

---

Posted by Geneal (Member # 10375) on :
 
Dear Cobweb,

I am sobbing as I read your post.

Your experience and wonderous relationship with your daughter and God,

Has left me without adequate words to express my thoughts to you.

Know that you and all of your daughters are prayed for daily.

I just found out my 85 yr. old grandmother has terminal breast cancer.

She lives in Germany, where they practice social medicine.

They removed the tumor, but she will not get chemo or radiation due to her age.

My Mom and I talked about this and somehow I feel that it is relevent to this topic.

We all have to die of something whether it be a car accident, drowning, or disease.

I think that we all hope for a peaceful death. A passing to the next life without pain and suffering.

That is not to be for some of us.

Do I think Lyme can hasten your demise......Yes.

However, as I look to my 4 and 5 year old children,

There is no way that I would gracefully give in to that.

I plan to fight this thing as long as I am physically/emotionally/mentally able.

I don't know if this disease is part of the "grand plan".

However, if this is my way to go, I won't go gracefully.

I may not be able to prevent/predict complications of chronic Lyme,

But with God's help, I plan to stay in the game as long as He lets me.

There was a time, prior to diagnosis', that I knew I was dying.

As my children sleep in the same room as I (since Katrina),

I would lay in bed and will myself to stay awake.

My greatest fear was that my children would find me dead in the bed in the morning.

I think we all do the best we can on any given day.

If Lyme is to be my destiny, then I want my children to remember their Mom as a fighter.

A person who kept going against the odds and gave it her best shot for them.

All my prayers and hugs to you all.

Geneal
 

---

Posted by stymielymie (Member # 10044) on :
 
DEAR COBBY:
i am very sorry to here the story of your daughter. we had friends who lost an 11 year old to brain tumor, it was devastating for all.

i know in your heart this is a very important
effect in your life. there are no jokes when you talk about this. this is very serious to you and i really feel for you and all your miseries.

now i know this is extremely morbid,
but since we can't be organ donors, i think
we should have living wills.
this is a will of how we would like to be treated
near death and after.

it would be extremely helpful for all lymies
if you donated your body for autopsy to columbia
to help find a cure for this stinking disease.

once they know where it attacks ,they may find
a better solution to the cure.

i was not advocating not taking abx.
but you must be careful, pulsing seems to be the best way right now, if you can not go off it.

interesting info :\
i applied for life insurance 2 years ago.
they told me i could not get it because of lyme disease. i went to my rare disease doc, not a llmd, and he wrote a letter saying lyme
would not shorten my life.
i did get the policy for 1,000,000.
so, i don't know if he was doing me a favor,
but the medical examiner at the life insurance company felt that it did not shorten your life
span.

docdave
 

---

Posted by Cobweb (Member # 10053) on :
 
I have always had organ donor on my Driver's License- and i know it should probably be taken off-so how does one make a directive to have your body donated to a certain institution?

Living will-you say? i should check into it-before it's too late!

Carol
 

---

Posted by sometimesdilly (Member # 9982) on :
 
i think there are stages of coming to terms with having a chronic disease like Lyme, and in understanding how much chronic disease can change a life.

i also think individual realities matter a great deal when it comes to thinking about death.

I'm not afraid of death for myself; I'm almost 50, have done a lot, lived a lot, and can definitely understand welcoming the peace of not struggling anymore.

But like you, Geneal, i'll have to be taken out kicking and screaming,and for the same reason. i'm not ok about the prospect of leaving a young child behind, much less one who is battling the same disease. i'm not letting go of this life one inch....

dilly
 

---

Posted by cactus (Member # 7347) on :
 
What a good topic, thank you for bringing it out into the open.

Like cobweb, the topic of death and dying is very close to my heart.

Knowing that organ donation is out, I recently changed my advance directive to specify no organ donation to living donors.

Mine has specific instructions to contact Columbia to find out if they are accepting donations for Lyme research purposes. Or, if not Columbia, then another LL research facility.

Sometimes research facilities do not need the entire body, but sections of organs, so my papers have instructions to contact them to find out what they need/want - if anything at that time.

Hope this helps anyone contemplating making those types of changes to their own papers.

Doing so has made the "no organ donation" issue easier for me to stomach.
 

---

Posted by Geneal (Member # 10375) on :
 
I had hepatitis A when I was 17 years old.

I almost died from dehydration before they figured out what was wrong with me.

I was told then that I could never donate blood or organs.

At first this was upsetting. Thinking about having children one day.

What if one of them needs a kidney and I am their best match?

I've thought about at least having my body completely autopsied to see if they can

Find those ketes hanging out.

It might be too upsetting for my children.

I will cross that bridge when I come to it.

(Hopefully and willingly a long time for now).

I am reminded of Kam's posting in General the other day.

I am going to try and focus on what I can do....not what I can't.

I may not be able to erradicate these diseases, but I want to spend my time

Focusing on life.......not death.

Quality vs. quantity.

Who knows? Maybe I will get doubly blessed and get both.

Hugs,

Geneal
 

---

Posted by Lymetoo (Member # 743) on :
 
I think we should all tell our families that we want our obituary to include "died from complications of Lyme disease" if it's at all in question or related to Lyme disease.

We also need to remind our families that our organs cannot be given to anyone (living).
 

---

Posted by sometimesdilly (Member # 9982) on :
 
did someone already suggest this,and if so, sorry for the repeat.

how about asking fallon at columbia directly if and how our bodies can be used for research purposes after death?

dilly
 

---

Posted by Vermont_Lymie (Member # 9780) on :
 
Hi everyone:

Yes, I went to the opening of Fallon's Columbia Lyme Center --

and he said that they ARE asking for donations from lymies after death --

They were very excited to be starting a new, the first

*LYME BRAIN REPOSITORY!*

OK, he probably did not call it the "lyme brain" repository, but you get the point; they do want us to donate our brains to science after our inevitable demise. And I hope that takes a long long long time for everyone.

Actually this seems to be very important. Perhaps through this lyme brain collection, we will be the LAST generation ever to suffer through the horror of the lack of public acknowledgement of chronic lyme disease because of the IDSA's mendacity.

because no one is going to be able to deny Columbia's evidence once they get going on this particular project, morbid as it sounds...

So, that is some consolation at least for all of us!

I do not know how they are going to execute this particular brain collection project....maybe they can start by updating their website?
 

---

Posted by stymielymie (Member # 10044) on :
 
more info;
A LIVING WILL IS ONLY LEGAL AND VALID IF
NOTORIZED, AND AGREED UPON BY YOUR FAMILY.
IF THEY DON'T agree with it they can tear it up and do what they want.
you can file a copy with the county you live in to make it binding, if family is a problem.

here are 2 places they say are free to complete a living will. you do not need an attorney.

if these don't work, you can get willmaker
at staples or such, look in the $9 section
without a box. this will also make a real will
for your children and has all the states.
it will work in alll states, eccept florida.
florida requires all assets be put in trust,
to prevent probate court.

i know this is not what you want, but everybody should have a living will.
you may be in a car accident.
you have to specify if you want to be kept alive,
ressusitated, or kept in coma.
it is your choice, but your family must agree
with your wishes.

if you have children, assests and over thirty
you should also have a will to protect your children.
LISTEN, I AM NOT A LAWYER, ACTUALLY HATE LAWYERA,
BUT THIS STUFF IS IMPORTANT AND SHOULD NOT BE DELAYED.

when i come back in 2 months i'm going to ask who had their will done!!!!!!!!!!!!
you do not want the courts to decide the fate of your children, where the assests go, who will be the guardian of your children.

http://www.caringinfo.org/
http://www.rocketlawyer.com/landing/landing-living-will.aspx?Partner=103&gclid=CKiO55ShtI4CFQQjPAodUwGZxA

DOCDAVE

[ 08. September 2007, 08:42 PM: Message edited by: stymielymie ]
 

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Posted by stymielymie (Member # 10044) on :
 
http://www.allaboutforms.com/Quicken_WillMaker_Plus.cfm

can join for $25 dollars and get willmaker free
cancel after 90 days


docdave
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
DR. PAUL DURAY (who used to be with NIH) WILL FOR FREE EXAMINE TISSUES OF DEAD LYMIES FOR SPIROCHETES_ Phyllis MErvine has contact info, I used to have it but stupidly gave away my last copy of it hard copy- hadn't kept one-

But oyu have to arrange and pay to get tissues TO HIM- NOT THAT EXPENSIVE- a few hundred I think- arrange beforehand*)!!!
 

---

Posted by Cobweb (Member # 10053) on :
 

quote:

---

Originally posted by Vermont_Lymie:
Hi everyone:

Yes, I went to the opening of Fallon's Columbia Lyme Center --

and he said that they ARE asking for donations from lymies after death --

They were very excited to be starting a new, the first

*LYME BRAIN REPOSITORY!*

OK, he probably did not call it the "lyme brain" repository, but you get the point; they do want us to donate our brains to science after our inevitable demise. And I hope that takes a long long long time for everyone.

Actually this seems to be very important. Perhaps through this lyme brain collection, we will be the LAST generation ever to suffer through the horror of the lack of public acknowledgement of chronic lyme disease because of the IDSA's mendacity.

because no one is going to be able to deny Columbia's evidence once they get going on this particular project, morbid as it sounds...

So, that is some consolation at least for all of us!

I do not know how they are going to execute this particular brain collection project....maybe they can start by updating their website?

---

Thanks Vermont for the heads up!
It's called the "Off With Their Heads Program"
 

---

Posted by Cobweb (Member # 10053) on :
 
God willing- I'll do it Monday.

I get asked all the time if I have a living will. But you're right -it is a necessary item for anyone wanting to put their affairs in order.

Thanks-we don't have to be so passive in matters of life and death.

Carol
 

---

Posted by Geneal (Member # 10375) on :
 
I've been thinking about this thread all morning as I struggle to get chores done.

I have to have hope. If not for me, then for my children.

What does chronic mean to a child with Lyme?

Lyme might be my legacy, but I will do everything possible to make sure it is not my children's.

Let us all hope for great strides, or any strides in a positive direction

For diagnosis and treatment of Lyme disease.

I don't mind being the guinea pig, if my children can reap the rewards.

Hopeful Me,

Geneal
 

---

Posted by Tincup (Member # 5829) on :
 
Below is the link to some advanced directive and living will information. It includes the option of donating your tissue for research.


http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=015463



 

---

Posted by Carol in PA (Member # 5338) on :
 

quote:

---

Originally posted by Vermont_Lymie:

...they do want us to donate our brains to science...

---

quote:

---

Originally posted by Cobweb:

It's called the "Off With Their Heads Program"

---

.
.
omg...ROFL





Carol
 

---

Posted by Cobweb (Member # 10053) on :
 
[QUOTE]Originally posted by Carol in PA:
[qb]


omg...ROFL



________________________________________________

No ROFL allowed-this is a serious discussion.

OMG is allowed however-and in fact encouraged to attend.

Carol in MD
 

---

Posted by stymielymie (Member # 10044) on :
 
COBBY I GOT MY LEASH AND
WILL DRAG YOU BACK TO OFF TOPIC.

SORRY PEOPLE SHE GOT LOOSE, I'M
SUPPOSE TO CHAPERONE HER!!!!

CONTINUE PLEASE WITHOUT COBBY, SHE'LL BE IN OFF TOPIC.

DOCDAVE
 

---

Posted by Boomerang (Member # 7979) on :
 
I know this is a serious thread. But I'm ROFL at the Off With Their Heads Program. Too funny.


Seriously though, Cobby, I am so sorry to read about your daughter's illness and passing. God Bless you.
 

---

Posted by Cobweb (Member # 10053) on :
 
thanks Boom-I contribute quite a bit of writing to our local chapter of Compassionate Friends, and I had a story published in a national Bereavement Magazine a couple years ago.

Laughing, crying, writing-it's all cathartic for me. It is not hard for me to talk about death and dying in a serious manner-but I guess because I have faced it head on(or is that head off)-I've realized death really is a natural consequence of living-so might as well live it as best you can and hope you die smiling.

Once you have embraced the death of a child-it is not so hard to embrace your own death.

Sincerely,
Carol


Grief Warriors

trudging their own road to Happy Destiny

Soul paths colliding in mid pain

Life plans fractured by loss

Mending in the fusion of
sorrows shared.

At Compassionate Friends we laugh and cry together at the same time.


OOOPS- sorry dave- I thought it was past your bedtime. I'm just going to the kitchen for a glass of milk.


 

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Posted by bettyg (Member # 6147) on :
 
i was surprised to read columbia wants our bodies! last i'd read, they didn't at this time!

also, if you designate your body to columbia, etc., your family MUST AGREE to this.

i wanted my body to go there, etc, but hubby talked to me and said he wouldn't honor that. he wants me nearby so he could visit my grave, etc. i understand that too.


so when we updated our will in march 07 before my hip replacement surgery, i made sure he agree that the money i wanted to donate after he/I both die, goes to LDA as I specified for specific percent as stated in both of our identical wills. he agreed to that.

so this is a very serious subject nor only for us but our spouses/kids.
 

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Posted by Boomerang (Member # 7979) on :
 
Lost my big bro last year to cancer. I still can't believe he's gone.

God Bless to all who have lost loved ones. Life does go on, and it gets easier. But you never quit missing them.
 

---

Posted by Cobweb (Member # 10053) on :
 

quote:

---

Originally posted by Boomerang:
Lost my big bro last year to cancer. I still can't believe he's gone.

God Bless to all who have lost loved ones. Life does go on, and it gets easier. But you never quit missing them.

---

No, you never do. I am blessed to be able to attend grief meetings on a monthly basis-because it is like attending a Memorial .

Grief ,like, lyme disease can be emotionally isolating. How good that we have a place to share.

Ever wonder how your survivors will miss you?
Thinking about it brings to mind a favorite quote that TC posted:

"I will pass this way but once. Any good therefore, that I can do, let me do it now for I will not pass this way again."


Carol
 

---

Posted by Cobweb (Member # 10053) on :
 
I think the most painful thing you can die from is a broken funny bone which is easily repaired in Off Topic.

Betty-according to Vermont- Columbia does NOT want our bodies-only our heads-which costs less for shipping and handling.


Cobby

[ 09. September 2007, 10:39 AM: Message edited by: Cobweb ]
 

---

Posted by treepatrol (Member # 4117) on :
 

quote:

---

Originally posted by lou:
People come here for support and honesty and deserve to be able to discuss bad outcomes just as well as success stories. If you think this is discouraging and morbid, don't read the thread. Some of us are going to die from lyme, and I am going to be one of them. I would like to be able to discuss this without other people assuming it is not valid for the forum.

Go read success stories threads if you need encouragement. There definitely can be a range of outcomes.

---

Lou I hope you dont think my morbid topic was meant to stop discussion cause it wasnt. okydoky Lou

Dont think because you have lyme it will win either Lou dont ever give up fight the good fight.
 

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Posted by CaliforniaLyme (Member # 7136) on :
 
SOme of us are sicker than others- and thinking positive thoughts didn't save Amanda Schmidt, age 11, who loved Halloween.

What I find truly disturbing is people who denigrate the truly sick and act as if there is something spiritually wrong with people who are seriously physically ill as if their illness is a sign of spiritual malady. I think that attitude in a support place for illness is abusive and extremely negative. I think it is positive to acknowledge the truth of peoples experience- locally we have had people bedridden who I have visited- and some of those people have been the sweetest most positive people in the world- and there was nothing wrong with their spiritual condition- only their physicality-
 

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Posted by sometimesdilly (Member # 9982) on :
 
i used to work with Holocaust survivors.

ask them how it was they survived when so many didn't and the answer almost invariably is- luck. no more, no less.

my husband survived 95% odds of dying when he had Leukemia just over 10 years ago. the difference between EVERYONE else with the same kind of leukemia in the hospital he was in for 8 months and himself- besides the fact that they ALL died and he did not, was "luck" too. Most probably the luck of some crucial as yet unknowable genetic difference.

But my husband's attitude did matter. It did not make a difference in what the disease could do to him- it did its best to kill him.

But attitude DID make a difference in staying alive; in several touch and go times when the pain even with iv'd narcotics was literally intolerable, his body was on the verge of giving way altogether and the priest was hovering, he definitely had a choice of staying or going, a choice he was well aware of. Only his determination to stay alive kept him alive.

and yes, the prospect of death feels different after you've stared it in the face.

dilly
 

---

Posted by Cobweb (Member # 10053) on :
 
Perhpas one of the most influential books in my attitude about living and dying was written by a Holocost Survivor- The Hiding Place by Corrie Ten Boom.

She and her sister were in the same death camp. Corrie survived, her sister did not. Corrie had a strong personal relationship with her God which she shared with others, her sister did not.

I don't necessarily think my personal relationship with God earns me more brownie points or buys me more time- but it sure makes the living easier as I journey towards my death.

Some answers are beyond our scope of understanding. When Suzanne was age 15 and in intensive care yet again, a two year old was brought in-a seemingly ,normal, happy, healthy two year old-until a brain aneurism burst- she was on life supports- and the day Suzanne was discharged and I brought her home, the family of the two year old was taking their child off life supports-she was brain dead.

Here was Suzanne-a medically fragile child who had survived far longer than anyone expected-going home. While this other family with all the expectations of a bright and happy future for their child were making funeral arrangements.

I don't understand. I felt almost guilty. It didn't make sense to me. So I have found that I just need to accept-life is what it is- I am not the one in control - I am mearly the one who has to keep making adjustments.

It's not the hand your dealt, it's how you play it.

Carol
 

---

Posted by sometimesdilly (Member # 9982) on :
 
Carol-

yes, many Holocaust survivors-- even the healthiest emotionally and those who were able to survive with all or most of their psyches intact- still feel survivor's guilt, because in the end no one answer why me? or, why him/her?

that said, i do not understand why you bring up the differences in the sisters' faith in connection to survival in a death camp? surely you are not saying faith made a whit of difference in who survived?

dilly
 

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Posted by Cobweb (Member # 10053) on :
 

quote:

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Originally posted by sometimesdilly:
Carol-


that said, i do not understand why you bring up the differences in the sisters' faith in connection to survival in a death camp? surely you are not saying faith made a whit of difference in who survived?

dilly

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I don't know the answer to that either- how much faith makes a difference for others. It was merely a synpopsis of the book.

I do know for me that Faith makes a difference in the quality of my life-and that is something I was able to grasp from reading it.

Carol
 

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Posted by 6t5frlane (Member # 8628) on :
 
Brad Delp was the singer from Boston that killed himself
 

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Posted by sometimesdilly (Member # 9982) on :
 
Carol- i understand what you're saying.

What i've always found most amazing was that in those depths of hell on earth, some people, whether they survived until the end or not, were capable of remaining who they were.

Faith provides comfort and hope. I can understand why those who lost their faith in those circumstances did so. And i can understand why some held onto their faith no matter what.

what is humbling and miraculous to me is those who held onto their own humanity and even generousity, regardless of whether or not they had faith- for example, who gave away their own scraps of food to save someone else, when to do so was literally a matter of their own life or death.

that is called not just surviving, but living. not many of us do that well even under incomparably better circumstances.

mea culpa. dilly
 

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Posted by Lymetoo (Member # 743) on :
 
up for savebabe
 

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Posted by Tincup (Member # 5829) on :
 
up....
 

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Posted by jasek (Member # 12395) on :
 
Cobweb...I was on the bone marrow registry, and had to be taken off. Also the same for donating organs. I wanted to be tested to give a kidney to my friend. My Dr. said no way for many reasons including I would not make it thru.

Anyone who has had surgery with lyme knows how brutal it is.
 

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Posted by ping (Member # 6974) on :
 
Will chronic Lyme be terminal? Well, it can be, if you don't get it treated; co-infections too. Mine was chronic for almost 50 years before I started treatment. Been off TBD tx just over 3 years now, work 10+ hours a day, getting over appendicitis from last year and about to enjoy a beautiful, sunny day in a horrible way... Unraveling boom from a warehouse so boats can take it to Louisiana to help with the oil spill...

Laugh when you can and live as much as you can. Technically speaking, life itself is "terminal", so all you can do is what you can do. I know these might not be the cheeriest words written, but it's the truth.

Gotta find my work gloves and get going....
 

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Posted by peacemama (Member # 17666) on :
 
This is really great -- the brain donation. I have often thought of donating this body of mine to science but only for lyme research (hell, I have a frozen placenta and frozen breast milk in my freezer), but if I donate to the University here, it would be used for anything they want, including mort science. I have a few dear friends who are funeral directors, and I really respect the profession, but I would prefer my sick body go where it would be better utilized.
 

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Posted by sutherngrl (Member # 16270) on :
 
I think very much as Tincup on this subject.

I do think its possible to die from LD. Or at the very least die from complications from it, or just from having your body so destroyed by it that something else takes hold.

However I think it is also possible to overcome LD and live a very long and healthy life after lyme. If that is not possible than so be it.

Like Tincup, I sort of don't care anymore. I know I am going to die. If its not from LD, then it will just be something else. So I don't sit around ruminating about death by lyme.

I think its in God's hands. The decision of what I die from has already been made.

Carol, so sorry for your lose. I think loosing a child would be a much more painful experience than the contemplation of the possiblity of loosing my own life to LD.

SG
 

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Posted by nefferdun (Member # 20157) on :
 
I started reading through this long thread and about 3/4 of the way I realized it was started in 2007. Just wondering if all you lymies out there that contributed way back then are still alive?

You'll have to excuse me for making fun. I need a joke to get me through the day.
 

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