posted
How deadly is Lyme disease? For someone who has the disease for several years and is very sick at times (not able to be out of bed for more than very brief periods).
I've been sick for 5-6 years, was on antibiotics for 2.5 years between two different LLMDs. Both LLMDs are well-regarded, part of the ILADS working group that put out the guidelines in 2004. During treatment, I had periods where I'd be doing better, but then I'd crash again. I eventually stopped treatment because it wasn't helping and I couldn't afford it anymore.
For the past year, I've been pretty sick. It fluctuates. At best, I can go on outings if I have a power wheelchair. At worst, I'm stuck in bed for weeks at a time, although I've always been able to get out of bed to pee etc. Fatigue is my biggest problem, but brainfog can be bad at times too.
I don't expect to get any better at this point. Do people who can't get better live a full lifespan like this? Do they gradually decline like an Alzheimer's patient? I have days where I feel like I'm 83, not 33. I wonder what it will be like in five, ten, twenty years.
Posts: 6 | From NV | Registered: Nov 2012
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
. Hi, I-Miss-Sugar - (I love the name!) I'm sure you have tried many natural treatments for your chronic fatigue, but I'll list a few that you should do some research on.
Acupuncture Massage Yoga or tai chi Ginseng Nicotinamide Adenine Dinucleotide (NADH) L-Carnitine Coenzyme Q10 Dehydroepiandrosterone (DHEA) Essential Fatty Acids Ayurveda
And never forget to exercise, everyday. Just moving, walking etc will be very beneficial.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Not being cute or funny, this illness makes you so sick you're afraid you will die and afraid you won't.
It can (emphasis on "can") make a person feel absolutely useless, listless, and out of control.
You (general) are doubted at every turn, labeled lazy, complainer, mentally ill or depressed ("You need a pick-me-up!") and that is by family or close friends.
In the meantime the medical community treats the LD population as if they are all hypochondriacs at best and attention seekers at worst.
And yet every day, the infected wake up to another full day of pain and loneliness.
Deadly? Yes, it is a "wasting disease".
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I'm newer to this by a longshot than you are, so I might be more optimistic or naive.
Lyme can be deadly if you don't treat it. I think Lyme can be deadly if you *do* treat it too but it's less likely, far less likely, if you don't.
That's what I've read. I've read a lot of anecdotes and I've read a zillion trillion papers and board discussions and even books. The personal account books are sort of not a good answer to the question because they're meant to be inspiring and of course the person who wrote the book is still alive.
For the most part: I think it is not deadly; or let's say at least as deadly as diabetes or heart disease -- multiple sclerosis shortens lifespan just a little bit and usually they die of pneumonia -- so it's a chronic health problem, that does not directly cause death.
This is what I think about Lyme. I think that it is not like syphilis. I think it's an extremely persistent relative to the relapsing fever spirochete and the initial mistake of treating it like syphilis is what has led to so many treatment failures and confusion over the years. Initially they prescribed a month of antibiotics for later stage syphilis because that completely worked; their assumption that it would clear just like syphilis destroyed a lot of lives.
I want to point you to the experience of one doctor who said he had to let himself get horribly sick three times and treat it three times before he was clear. Because this is what you do with relapsing fever. you wait for it to hit and then you hit back.
I know you're tired. Me too and it's only been a year for me. i already know I will never be the same and have no illusions whatsoever about going back to the "old me." If I expected that, then there would be no possibility of getting better, because better is going to look totally different than what I would have thought it looked like at the beginning of this.
But try treating again. Just try it. Just one more time, one more year.
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Ms. Sugar...
It can be very deadly, more so than other diseases. The numbers lost is staggering. One thing most have in common is they couldn't get treatment (most cases) or wouldn't treat, or weren't treating the right infection at the right time.
BUT, if you continue treating "as needed" you can live a longer life span generally. Treatment may mean pulsing, on and off, one year yes- the other not so much, etc.
Most long timers 20 or more years (who are still living) treat using the "as needed" idea. No one likes to take antibiotics , but often that is the only thing that works to get you to a better place.
Then they go, go, go for as long as they can not treating- way too long usually because no one WANTS to treat- then they finally break down and treat to get themselves back up again.
And TX is right, many days "you're afraid you will die and afraid you won't." Can't say how many times I've been in those shoes and watched others do the same.
Plus, treatment methods are improving. New things every day are being discovered. We are learning more what works and what doesn't and why.
I've seen many many people go into remission and live quite normally for years, then relapse. They treat again- hating every minute of it- and finally get some good days back again.
Hope this gives you some of the answers that you wanted.
posted
Have you tried herbs? I've been where you are and it's never too late to start treatment with herbs. I thought I was healed after abx but relapsed. The I started with herbs.
I was too weak to stand for very long at a time. My mind was confused and foggy. I bumped into walls. My feet were like empty pods. It was hard for me to walk on them. At one point, I weighed only 100 lbs.
Treating Lyme and the coinfections with herbs that target them and taking the supplements necessary to destroy the Biofilms where they hide, brought me back to where I'm living a pretty normal life. I still have some Lyme problems, but with herbs, I'm on top of them. I think following the core protocol on BuhnerHealingLyme.com, as much as a person can, is one way of bringing yourself back to a pretty normal life.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Definitively try herbs. Buhner's book is one of the best starting points.
Definitively, lyme can kill, as many other diseases can kill too. Even the flu.
Sorry to know you are in wheel chair. So was my daughter, twice.
We're both out of lyme, daughter and I. for more than 6.5 years.
During lyme, I felt literally dying, going down very fast.
Don't buy that story that lyme takes YEARS to go neurolyme...
...or that long term lyme sufferers suffer more than short term sufferers.
Or that long term sufferers will not heal, while short term sufferers heal faster.
In my experience, it's NOT true. A new bite can create years of illness despite fast treatment.
fast treatment is not warranty of healing lyme faster than long term sufferers.
Not all long term lyme sufferers are in wheel chair, with seizures etc. Some newly bitten can go fast to wheel chair, totally neurolyme like it happened to us.
Lyme bacteria can cross the blood brain barrier in a matter of seconds or minutes after a tick bite. So it can go neuro very fast.
Add many coinfections, well, you may get a deadly cocktail if your immune system is not strong.
Strong immune systems will not be doomed by lyme or coinfections. You bet that, as many people get bitten, constantly, and never fall ill with lyme and die at old age of something else, as I see around me here in Switzerland.
Do not buy the idea that all fall sick to lyme because of many coinfections. I get bitten often, and do fall sick with lyme anymore. Nor my daughter.
before, one tick was enough to put my daughter in wheel chair, and me in bed for weeks, months.
If you treat lyme, you usually improve. I see that here: most people who treat intensively improve, no matter what treatment they do.
You do not need to treat using drugs. I didn't, and I'm out of lyme. My daughter too. No need for drugs, they can be many times more harmful than helpful.
what kills is when your fighting spirit is no longer with you. When you get convinced you won't heal. That is dead line. You join with other lyme sufferers that swear you won't heal, you got your death sentence if you believe them.
The truth is many people also heal. Most heal partially, and some heal totally. No matter which stage of lyme, what matters are how serious are your symptoms.
Dr. K. says that the most toxic people, with bigger detox problems, will have stronger symptoms, and will take longer to recover.
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
Thanks for the suggestions everybody. I can't really afford to keep treating. This illness has me mostly housebound. I can't work, but I'm not eligible for disability because I didn't pay social security taxes while I was a graduate student. I have no income, and am completely supported by my boyfriend, who definitely cannot afford Lyme treatment for me.
My second LLMD incorporated a lot of herbs, and would try them when the antibiotics weren't working, but they didn't help. It was just a lot of money spent that didn't get me anywhere. My entire Lyme treatment was paid for by student loans.
To be totally honest, I'm just hoping that I don't have to live like this for a very long time. I don't want to keep going like this forever.
Posts: 6 | From NV | Registered: Nov 2012
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