posted
i know this is something we don't like to talk about but it has to be in the back of our minds. doing researching i came across several articles that were very, very negative.
basically they said, you have lyme, if you don't get the right treatment, you die. you will probably die anyway but, hey, just make yourself comfortable until you do.
sooo, how many people do die from lyme or lyme produced side effects? are there people who were critically ill, late stage lyme and who have received treatment and are doing better?
are those types of articles accurate? they just are very depressing to read........
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Andie333
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posted
Geniveve,
In answer to your question about late-stage people getting successful treatment:
I was bitten by a tick (with bullseye rash) in 1996. The ID doc gave me 10 days of abx and sent me on my way.
Since the rash vanished, I thought I was okay. But over the next 8 or 9 years, I had these weird medical things happening and was sent from one specialist to another in search of answers.
By the time I realized what was going on -- thanks to my acupuncturist -- found a LLMD, tested positive and started treatment -- I was at about 18% of my capacity.
I could barely walk, couldn't think. Struggled for the energy to get across the room. I literaly felt like I was dying.
That was almost 8 months ago. Now, I'm able to drive, work, can walk some days without limping. I feel my energy growing each day. I'm far from healed, but at what's probably 60 to 65%, I am happy with my progress so far.
I've just started treatment for Bartonella, so I'm currently a bit herxy, but I'm hopeful.
I often wonder about people dying with undiagnosed Lyme. There was a woman I knew pretty well. She was about 10 years younger than I and suddenly started getting very very sick. That went on for several years, and when she died, they said it was ALS.
I wondered if that was a correct dx. If her life could have been saved with a few antibiotics.
The trouble with fatalities is that you don't necessarily get Lyme listed as the cause of death.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
I almost died. Twice right after being diagnosed. The first time, I had started the standard course of doxy, and was bounced from ER to ER with the standard "It's just the Lyme making you sick" line that doctors love to give. Within three days, I was literally unable to get out of bed.
I managed after 20 hours of struggling to rise, to drive myself in to the ER. They did a spinal tap and ended up keeping me in quarantine due to "dirty" CSF... Turns out, I had lyme induced meningitis and encephalitis, and was hours from not pulling through. They took me off the doxy and put me on vancomycin, rocephin, and something else... Can't remember.
I spent a week in the hospital, and was released with a PICC line. I gave myself two injections of Rocephin (200mg) a day for six weeks. That's when I almost died again....
Turns out, the Rocephin caused severe anemia, and no one bothered to tell me until it was too late. When they pulled out the picc they told me to go to my PCP and figure out why my HGB was 7.2... I was taken to the ER for a transfusion, but was refused. Over 3 weeks, while everyone scratched thier heads, my Hemoglobin dropped to 4.0 and two other transfusions were refused.
My doctor sat with me to prep me and my boyfriend (the only person I had around) for the worst case (but most likely) scenario. I was instructed to stay away from anything that could potentially cut me (razor, paper, pencils, kitchen knives, etc...) because one drop of lost blood could be too much and there was no way EMTs would be able to reverse the damage. Pretty Scary, and screwed up looking back at it... Why was I turned away? I obviously needed the blood... At the time I was too drained (literally) to deal with it. After about 6 weeks off the Rocephin, my body started to replenish the blood flow, and my health improved.
I'm not currently being treated for LD, I am waiting for an actual LLMD. My ID doctor is still monitoring my health and trying to keep me comfortable while I wait.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
quote:Originally posted by AP: I'm not currently being treated for LD, I am waiting for an actual LLMD. My ID doctor is still monitoring my health and trying to keep me comfortable while I wait.
I hope you have an appointment with an LLMD and that is why you are waiting!!??? Your ID dr is not smart enough to give you abx in the meantime?? Sorry if I'm overreacting to what you posted...??
Untreated Lyme can result in death, and delayed treatment can result in death. I had Lyme for 42 yrs before getting properly dxd and treated. [likely a less virulent strain than some have]
Now I'm doing GREAT! It took a long time, but it was worth the pain and misery of treatment! My parents were not so lucky, however. They are both deceased.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I am a new lyme. I had lyme about a year before diagnosis. Multiple co's and very virulent strains. Am losing eyesight. Have had aggressive tx. It depends on you, your immune system, the lyme, the co's ,the severity of strain and txs and when initiated ( at least that is what I have come up with for an answer for myself this year). Remember, they are parasites so it is to their advantage to keep us alive for a host. Anything can happen. Only thing we can do is irregardless of the diagnosis and when tx started keep fighting the battle. I wish you strength and good luck.
Posts: 719 | From Delaware | Registered: Jan 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Lymetoo:
Untreated Lyme can result in death, and delayed treatment can result in death. I had Lyme for 42 yrs before getting properly dxd and treated. [likely a less virulent strain than some have]
Apologies if I'm over reacting as well. But I need to tell a story.
When I was first diagnosed there was a woman running a tiny support group, near where I lived.
Her teenage daughter was being aggressively treated for Lyme with ABX. She had Lyme, herself, and used a lot of herbs but never took any ABX. Her daughter was getting better and she was so focused on making that happen.
We got a call one day that she died of a massive heart attack in her sleep. She was 43 years old.
Another woman and I ran the group afterward in her memory; mostly educating the couple of newly diagnosed people that wandered in each month.
Untreated Lyme disease does kill. I have no idea what the statistics are.
Geniveve is right, we are going to all die of something, whether lyme related or not, but that doesn't mean we shouldn't fight to have the best quality of life possible in the meantime.
AP are you on a waiting list for an LLMD? If not let's find you one, k?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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quote:Originally posted by Lymetoo: I hope you have an appointment with an LLMD and that is why you are waiting!!??? Your ID dr is not smart enough to give you abx in the meantime?? Sorry if I'm overreacting to what you posted...??
I do not have an appt with an LLMD yet. They aren't exactly growing on trees... I trust my ID doctor. He's a great man, and very in to researching what the best route is for me.
He has a couple of other Lyme patients (when I started seeing him, I was the first), and since meeting him in the hospital last year, he has done a great deal of research on sites like this, ILADS, etc...
Even while I was in the hospital, he was the first face I'd see in the morning... He'd always let me know why was being taken off, or kept on an antibiotic. He'd give me his honest opinion about what I should do, and let me make my own decisions from that. He got to know me and my lifestyle, and helped me keep a bit of normalcy while dealing with this debilitating disease.
The thing that touched me the most about him was when I was balling in the hospital, he took my hand and told me that he wouldn't let this disease win. He would do everything for me that he would do for his own sister. He's proven that through his research.
He reassures me when I doubt myself, and when everyone else doubts me. He wants me to get better, and respects my desire to see an LLMD. He's keeping me comfortable, and healthy, while I wait for an appointment.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
My llmds said that the reason nobody pays attention to lyme disease is becuse unlike aids people don't usually die. it is considered a disease of morbidity not mortality.
Also, dr. p says that 10-12% of the population in endemic areas have lyme. Most just don't know it.
I felt in my gut that I was dying from this disease. I also believe that if it went untreated I would have had a heart attack, I am 43. Now that I have had treatment, I know I will live...the key is to know what you have and treat treat treat.
-------------------- We are spiritual beings on a human journey...
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Human,
I had that same feeling...like I was dying.
That was before dx and treatment. Then in my first herx, I had full-body paralysis and ended up in the ER.
Then, too, I wasn't sure I was going to survive this.
Now, I'm feeling pretty hopeful...I have more good days than bad and more good hours each day.
Andie
[ 21. February 2006, 11:37 AM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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5dana8
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posted
I believe what human beings doctor said . That unlike aids ,lyme usually doesn't kill you.
Left untreated ,it can go to your heart and become fatal. Left untreated and it can cripple you ,blind you,immobilze you, leave you with brain damaged ect..
Most people don't die if treated for lyme disease.
In most case's if lyme is left untreated long enough it can become chronic.
But treatment can bring, to some degree remmission.
What kill alot of the people I read in the lyme times obit's are from not being treated at all or from suicides.
The disease can bring you to the very breaking point. And this is sad when some people give up.
I have had lyme 20 years and I am far from dead.
If I had never gotton treatment I would have been dead a long time ago. Or insane.
Up with humanbeing: treat ,treat,treat. And beat this bad boy into remmission.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
In Iowa, we have 3 reportedly lyme deaths shown on death certificates.
I think that's one area we need to be more persistant on, for folk' family to show "caused by lyme complications" in newspaper obituary edcating the public.
Now too we can furnish the mailing address of our to open CHRONIC LYME RESEARCH CENTER address in the newspaper for memorial money to go there in memory of me/others.
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klutzo
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posted
What a depressing way to start my day....reading about the mother who "only took herbs" for her Lyme and died because of it, when I have no choice but to rely on herbs, due to allergies to all ABX but Cipro.
Maybe I should just stop wasting my money on them right now, and check out sooner...why delay the inevitable?
I actually had someone who is a very big mover and shaker for Lyme advocacy in my state harass me by e-mail about how I should take constant steroids, for the rest of my life, so that I can take the ABX I am allergic to!
IMO, that idea is totally insane, and I can't imagine any doctor going along with it, but apparently they do, since she quoted me a couple of cases of miraculous relief with a combo of steroids and ABX. IMO, it was probably just the steroids supressing immunity that got rid of the symptoms in those cases, with disastrous consequences to come later on.
My herbs make me herx like crazy for one full week each month now. They used to make me herx all month long at first. I have far more good days than bad now, and am able to drive, even in winter. I am not getting the sort of dramatic results some of you on ABX get, and can't go back to work due to neruo sx, but I sure don't want to feel like I'm wasting my efforts,and ought to just start looking at caskets!
After 20 yrs. of misdiagnoses, I am still here, and after 2 1/2 yrs. on "only herbs" I am still here and seeing improvement, though I recognize that the heart and brain damage I suffered when misdx'd will probably not go away.
If I can stay alive long enough with my "only herbs", maybe a cure will be found that does not involve ABX. I'll never know if I don't try.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
[QUOTE]Originally posted by AP: He's keeping me comfortable, and healthy, while I wait for an appointment. Healthy? I still don't get it. Your ID sounds very caring, but....
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey klutzo
I wouldn't be discouraged about the herb article .
You are herxing on your herbs...That ususally means killing action is going on. And you are having some good days !!!
Hey, if this is working for you and keeping you functional I wouldn't think "about checking out soon" or knock it.
Take care and keep on keepin on
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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quote:Originally posted by Lymetoo: Healthy? I still don't get it. Your ID sounds very caring, but....
I'm not losing conciousness, or in the hospital. I consider that pretty darn healthy. There's nothing else I can do. I go to a doctor I like, and that I trust, which is more than I can say for other Lymies.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by klutzo: What a depressing way to start my day....reading about the mother who "only took herbs" for her Lyme and died because of it, when I have no choice but to rely on herbs, due to allergies to all ABX but Cipro.
My herbs make me herx like crazy for one full week each month now. They used to make me herx all month long at first. I have far more good days than bad now, and am able to drive, even in winter. I am not getting the sort of dramatic results some of you on ABX get, and can't go back to work due to neruo sx, but I sure don't want to feel like I'm wasting my efforts,and ought to just start looking at caskets!
After 20 yrs. of misdiagnoses, I am still here, and after 2 1/2 yrs. on "only herbs" I am still here and seeing improvement, though I recognize that the heart and brain damage I suffered when misdx'd will probably not go away.
Klutzo
Klutzo ~ I'm so sorry, I didn't mean to make it sound like it was undo-able with alternative means and should have given more information.
Please forgive me for doing this to you and permit me to explain. We'll probably both feel better.
The story I was telling took place in the mid to early 90s. The woman was a part-time herbalist and was only taking herbs to alleviate symptoms. Things like tincture of Valerian and such.
She wasn't going after the bacteria at all. It's completely different. (It's similar, to my mind, to just taking pain meds and thinking it's enough when all it does is mask symptoms, while infection is raging.)
There wasn't the amount of information available, that there is today, in the 90s and I believe you can probably treat well with a good combination of herbs, supplements and/or alternative methods.
I was telling that story to impress upon those questioning it the importance of addressing the TBDs.
I had given up treating for quite a few years after not being able to bounce back from a car accident. I continued to spiral downward until I was snapped out of denial by a post by Tincup about a day after I came to Lymenet last may.
I don't know how much additional damage I did by denying it for that time and am thankful to have a chance to go at it again and maybe get my life back.
I also have a extremely difficult time tolerating any ABX (although am only actually allergic to Sulfa) and am trying a different route.
Again, I'm so sorry, I didn't think about someone waking up and reading what I wrote and hurting or frightening them.
Please accept my heartfely hugs and wishes we all recover in whatever way we can.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Does your ID doctor's last name start with a B? There was an ID doctor I saw in your neck of the woods when I was stuck at my parent's in MD.
He was the nicest doctor I saw in my journey through 15+ doctors in six months.
Apparently this doctor was known for doing his rounds at the hospital at 3 a.m. in the morning...he would then start at his office at 7 a.m.
He was just the best...wondering if he is the same ID doctor you are seeing....
Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Dear TrueBlue, No need to apologize, but I do appreciate the clarification that the woman who died was only using herbs for symptom relief. You mention she used Valerian. I have tried the Valerian tea, and the only thing it did was stink so bad it drove me right out of the house!
I was supersensitive to that part of your post from the get go, because I have read so many things about Lyme saying basically "take ABX or die", and as I said, this one woman "expert" was sending me e-mails saying that I need ABX to keep from dying, even if I must take steroids for life along with them to stop allergic reactions.
Also, and please excuse me for being morbid, I fully accept that this illness is going to kill me. I have some "ability" (I hate the word psychic), and I am pretty sure I know how I will meet my end. I'm not going without a fight though!
I was misdiagnosed with FMS for 17 years, and like a good girl, when the Rheumy said exercise, exercise, exercise, I obeyed, even though it meant taking a heart drug to contol the tachycardia that resulted.
I desperately wanted to rid myself of the 46 lbs. I had gained in the first two months of my illness, and I have very bad lipid profile that scared me into exercising also. I pushed and pushed, exercising with tears pouring down my face, six days per week of the most vigorous aerobics, even Jane Fonda videos!
The result: 3 leaking heart valves and two conduction disorders. Combine this with high blood pressure and Lyme rages, and you don't need to have "ability" to see the eventual outcome, lol!
I still exercise, because I have all my life, and need to do it to sleep, and to keep from stiffening up so much I hurt a lot more, but I am much more moderate now that I know it's Lyme.
I do a 45 min. workout 3 X a week IF I feel good enough. Only 30 mins. of that is aerobics, and at a slower pace than before on a treadmill. If I don't feel so hot, I do dance aerobics instead of treadmill, since they are much easier.
Sorry, I seem to have gotten off the subject of mortality. I am so glad you explained your post, and please don't feel badly. Truth needs to be faced, no matter how unpleasant, and I am not at all angry at you for what you posted.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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geniveve
Unregistered
posted
klutzo, bless your heart. you stated what i have hidden in my mind but not articulated.
i, too, know that this is going to kill me. i don't know how long i have had this but i'm betting since the 1980's. i was probably reinfected last june and symptoms have progressed rapidly.
that and NO support at home. very stressful so i'm on my own.
the way i feel somedays, I am ready to go. I just want to make peace with my God and know that I go with a clear conscience.
Somedays I am so bitter, I feel like saying "after i'm gone, you will know that i was sick, and i hope you realize you were wrong, caused your ignorance and callousness contributed to my death." sorry, guys, but that's how i feel some days and it doesn't do me any good i know.
i'm hoping, no, praying that this dr. *** answers `my prayers.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by klutzo: You mention she used Valerian. I have tried the Valerian tea, and the only thing it did was stink so bad it drove me right out of the house!
I am so glad you explained your post, and please don't feel badly.
Klutzo
Thank you Klutzo.
And may I suggest blocking the steroid woman from your email list.
Now about the Valerian, heeheehee, I have plastic bottle of capsules, inside a glass jar, in my refrigerator. I never open it in the house.
Pew!!!! Stinks like someone else's, obviously not my, dirty socks!
I have found the liquid is less nasty and can take a dropperful in a small amount of water and still get it past my nose. It seems the glycerine somehow makes it... um... not as stinky.
Sorry to get off topic but the subject of stinky herbs needed addressing. Back to our regularly scheduled programing...
quote:Originally posted by geniveve:
that and NO support at home. very stressful so i'm on my own.
i'm hoping, no, praying that this dr. *** answers `my prayers.
Me too, I'm sorry that you're in the same situation. (It really stinks much worse than Valerian root.)
Same here in the doctor situation as well. I am hopeful for the first time in a long time that I can have a better quality of life, fwiw.
hugs, good luck and better health
ok, still off topic. ^shrugs^
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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klutzo
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posted
Genevieve,
I am so sorry to hear you are having the same morbid thoughts that I have. I think some of it is the depression that neuroborreliosis causes.
I also have times when I pray not to wake up in the morning, but I have two old, sick dogs who would have to be put down if I were not around to care for them, so I keep on going.
My husband is pretty supportive, but for a very bad reason...he is getting sicker himself, and now understands what I am going through. He refuses to get tested for Lyme. I don't think he wants to know.
Instead he is going to school so he can change to a less physically demanding job. This will involve a huge pay cut, and we are already strapped, due to my disability.
I am terrified he will end up on disability too and we will starve. I can't take much more bad news in life, and can't stand to see him suffer.
I feel it is important to be able to say these things, and if not here, then where? Getting them out in the open helps us deal with them, or at least it helps me.
Our self-talk is important, as was mentioned. It is true we are all going to die, so why not have hope while we're here. This is an area I need to work on for sure!
Hang in there. I have to believe there is a reason for all of this.....
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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5dana8
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Member # 7935
posted
hey kludzo
Yes. It is hard to have hope sometimes. When I try to look into my future ,I say "what will become of me?"
This I don't think I know. So I try and just take One day at a time. Sometimes just one hour at a time.
I get up the next day and am like . I have to do this. And then the day is over and it is time to start over.
When I get discouraged I mentally make a list of all the things I am grateful for. And then chant them over and over in my mind. This shoulds like simpleton advise but really does work .
Take care
Where there is life... There is hope
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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klutzo
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posted
Hi Dana, You brought up a REALLY good point! The more we can live in the present moment, the happier we usually are. (With one caveat....see below for my formula for happiness)
Look at dogs, for example. Our 11 yr. old Golden Retriver has one of the worst cases of spinal arthritis our Vet has ever seen, and I suspect Lyme, since we had a major tick epidemic around here about 5 yrs. ago.
He has trouble getting up off our floors now, so he won't be around for much longer, since I can't carry a 95 lb. dog, the way I carry our other paralyzed 21 lb. dog.
Despite his arthritis, if you give him a cool, sunny day, and he will chase around the yard with his favorite ball in his mouth like a puppy. He has no rememberance of how much he hurt after the last time he did it, nor any apprehension about how much he will hurt after doing it this time. He is just celebrating his life and being a dog. Sometimes I think the human capacity for long memory can be a curse!
I believe that the connection between living in the present and happiness applies to everyone, not just us Lymies.
Actually, if you pressed me for an equation for a happy life, I would say it is this: Living in the present plus self-discipline = maximum happiness. It is da*n hard to do though!
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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hopeful123
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posted
i am a big worrier from way back, but i can honestly say i never thought that lyme could kill me if untreated or treated unsuccessfully. worry is the opposite of faith. i tell that to myself all the time because i am a worry wort.
seeing my llmd and sticking to treatment takes all my time. i have done what i can, and now i have to have faith that the treatment will work and i will get better.
so far, it is working. just way toooo slllooowwwly
i am in a lot of pain right now, so i need to be quiet. if i sound grumpy, forgive me, please
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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posted
I happen to be having a good run of a few days...which means not feeling like this is going to kill me, but still living with myriad symptoms.
Before I learned that it was lyme that was causing my rabbid madness, I was sure to die. No way around that. Yes, absolutely lyme disease if undiagnosed and untreated, will kill by insanity, thus suicide. And that would have been a great shame. I am so fortunate to know what had infested all my cells and started treatment.
Now I still herx and that's pretty intense to my nervous system but I remember what someone on here said, "this is not me, this is not me" this is the disease. That helped me through the last crying jag.
Physically, as well since beginning treatment I have also felt extremely close to death for it being in my heart and in my lungs, and the rest of my organs.
Yup, it can kill. I think it is rare, but does happen.
On the other hand, with the right mix of protocols and the right support and the right mindset and a spirit to live, I think it can be sent back into remission too.
posted
I was late stage lyme, and I am definetally seeing improvement. I just got back from taking my kids skiing. And Im still standing, and able to log on the computer. I spend alot less time zoned out, I am rarely in pain. Ive started dating someone. I think I will work again someday. I am not going to dye from lyme. Now, maybe a traffic accident...
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I hope you have an appointment with an LLMD and that is why you are waiting!!??? Your ID dr is not smart enough to give you abx in the meantime?? Sorry if I'm overreacting to what you posted...??![[group hug]](graemlins/grouphug.gif)
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