posted
Seems to me that as long as we know what we have and continue to treat it when it surfaces, or resurfaces...that we'll be able to put off an early demise.
At least that is what I'm hoping for. It took the lives of both of my parents, but at least they lived to ages 77 and 81.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Well, I have been wondering the same thing, after fighting this for so long and now having muscle wasting. It has seemed that the people who have had it the longest have been expiring, like Kathy Cavert and Rose and the Canadian activist whose name I can't remember right now, lyme brain.
Not to say everyone will end up dead, because some do achieve remission. But some will. Thanks to Steere, Wormser, and the rest who conspired to prevent a prompt diagnosis.
Posts: 8430 | From Not available | Registered: Oct 2000
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Cobweb
Unregistered
posted
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.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
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
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
So do they test people for syphilis anymore?? Surely it's still around?
Carol...I like the headstone idea!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sometimesdilly
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posted
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
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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merrygirl
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posted
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
Posts: 3905 | From USA | Registered: May 2007
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just don
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posted
Doc Dave asked "Will chronic lyme be terminal?"
Not if you dont die,,,and your NOT allowed to do THAT!!!terminally--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Carol in PA
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posted
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
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
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.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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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!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
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
Posts: 1250 | From Canada | Registered: Aug 2004
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kelmo
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posted
Boy...you're not giving me hope to share with my 19 year old daughter!
Posts: 2903 | From AZ | Registered: Feb 2006
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stymielymie
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posted
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 ]
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
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.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Aniek
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posted
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.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
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.
Posts: 355 | From NY | Registered: Jan 2006
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CaliforniaLyme
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posted
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-
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-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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treepatrol
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posted
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.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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sometimesdilly
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posted
ditto what you said, Lou. i hope the conversation that DocDave began here will go on here.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Cobweb
Unregistered
posted
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.
posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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Cobweb
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posted
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.
posted
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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CaliforniaLyme
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posted
Carol, Do you have a photo online??
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
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.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
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posted
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....
quote:Originally posted by cave76: I hope no one gets offended by either coping mechanism.
"Life is a Pathogen" --cave76 circa 2007
Too late-from here on I will try to maintian the speed of traffic and go with the flow.
I have nothing scientific to add to the question of whether Lyme is a terminal illness-but it sure does seem like there's a lot of victims on the lyme obituary list.
I agree with Just Don-Will Chronic Lyme Be Terminal?-only if you die from it.
posted
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.
posted
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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Cobweb
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posted
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.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
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.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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stymielymie
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posted
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.
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Health
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posted
If lyme wont kill, then I have something e
Posts: 1250 | From Canada | Registered: Aug 2004
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sometimesdilly
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Member # 9982
posted
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
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Cobweb
Unregistered
posted
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 ?
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
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 Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
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.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
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
Posts: 1250 | From Canada | Registered: Aug 2004
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
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.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Cobweb
Unregistered
posted
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.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
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
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
this is hitting so close to home for me now. i know that my mom has lyme. she's 83. right now her legs are so weak she can't walk anymore. she has lost the use of her bowels and is pretty much incontinent, and, yes, wears a diaper.
she confuses and mixes words something awful. she looks so old. yes, i know, 83 is old, but she looks so frail.
in my mind, she died years ago. the mother i knew died. this woman is just waiting for death. she's miserable.
it has killed her, just as surely as putting a gun to her head. oh, maybe, not physically right now, but she is suffering.
lyme does kill. it kills the spirit, takes your identity, takes everything....
i know i will die from lyme. whether it's heart, organ, whatever, the end result will be the same -- lyme. call it what you will.
i'm just being realistic about how i feel. i don't want to end up like her....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Cobweb
Unregistered
posted
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.
posted
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...
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bettyg
Unregistered
posted
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.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
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 Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Cobweb
Unregistered
posted
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!
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
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
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
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.
-------------------- �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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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
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).
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
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
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
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?
Posts: 2557 | From home | Registered: Aug 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
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.
can join for $25 dollars and get willmaker free cancel after 90 days
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Cobweb
Unregistered
posted
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"
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Cobweb
Unregistered
posted
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.
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