posted
It seems that nearly everyone I read about on this board has a story that details a life of small (if any) improvements in their condition. Relapses and repeat treatment also appears to be the norm. Doesn't anyone just simply get well and find that they are then done with the disease?????
I think we all must admit that the treatments available for our disease are woefully inadequate and not particularly efficient. I think terminal cancer patients have a better chance of treatment success than we do (based on what I read on the Net). In my own case, I have seen some improvements but overall I'm not blown away by any progress that I've experienced.
[This message has been edited by broguearcher (edited 25 May 2005).]
Posts: 183 | From Craley, PA | Registered: Jul 2004
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posted
Well, my mom has Lyme. She's had it for a very long time. Twenty years ago, she would come home from work and crawl (literally) up the stairs to bed. Much of my childhood was spent playing around my mother sleeping on the couch...
This week she's on a trip to Montana with my dad - they're doing a photography class with hiking and stuff! She tends her own garden (which is really big) and moves her own rocks and trees (also really big).
Sure, she has her down days and sure, she's got some serious weird food and chemical sensitivities, but she's still living her life and doing pretty darn good at it.
Things get better. Maybe not fast, but they get better. Hang in there.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm not completely "well," but I'm definitely on my way. Two years ago, I couldn't hold a newspaper, one year ago my hips hurt with every step. I haven't taken a pain killer strong than advil in 2 months.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
mANY DO GET WELL..IN FACT SOME ARE GETTING BETTER AND DON'T REALLY NOTICE IT.
i HAVE FOUND THAT TO BE TRUE EVEN WITH MYSELF.
i OFTEN FORGET HOW BAD IT was...EVEN A COUPLE OF MONTHS AGO AT THAT.
THERE IS HOPE
O...darn caps lock.
Chin up.
------------------ Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! Iowa Lyme Disease Assoc. www.ildf.info
Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
I am not cured, but the lyme is controlled...and that is ok with me.
Diabetics take medication every day, people with high blood pressure take meds every day, ect.
I dont have a problem with taking meds. In fact, I thank G-d for every pill I put in my mouth that I am fortunate enough to have a Rx and the ability to pay for it. I am too grateful to resent it.
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Yes, many people get well. I did, now already close to five years ago. Completely well and better than ever, because my body also is no longer loaded with heavy metals, environmental toxins, and toxic root canals. My husband at the age of 80 also is back to a great life, without a wheelchair.
We learned that only by addressing it all, will we have lasting wellness. Many people are not interested in this and this is probably the major reason why so many are still here as they were years ago.
I do not call it remission. I call it a cure, because I have regained a functional immune system since unloading my body of all destructive neurotoxins. Even though I am now a few years older, I can do more than I could twenty years ago. Once you learn to think in broader terms and of your body as a whole, you will realize that it is not just as few Lyme bacteria that you are fighting. You might want to read some of our doctor's ideas - how he addresses Lyme Disease: www.neuraltherapy.com/articles/Lyme Disease: A look beyond Antibiotics.
Our best to you.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
I am definetly not cured of Lyme but Far better.
I used to be in a ball unable to pick my head up most of the time ....
5 years later I am about 80% functional and just painted myhouse this spring....gone back to school, and have many many good feeling days than hard times.
It happens...it just doesnt happen as fast as well want it... But never give up!
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Broguearcher,
Luckily I've kept a journal and write down everything that has happened to me.
I reffer back.
I also have an original list of symptoms that I wrote on the back of a post card. I wrote it when my hands hurt so much I could barely write.
This was before I knew I had Lyme Disease. Any way I wrote, "feel like being slowly poisoned" or "like I have something eating away at my muscles".
There are alot of symptoms that have lessened or are gone most of the time. Now a days I just write each thing that is happening.
Well I've got to update the journal. Heather
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
many have gotten better..... the thing is when they get better they stop coming to this board.....
Over the years I have seen many names come and go.... Actaully I was just thinking that alot of the names on the board are new with a few from when I started coming on.
If you do a search for sucess stories and my name as the poster you will find some posts from those who are well and back to living their lives.
posted
Today I'm actually feeling "normal" after I had a thai massage!
A little achey here and there but much improved. I'm still on antibiotics and it's only been 5 months so it will probably be a while before I'm back to normal on a daily basis. But today I'm feeling good!
Posts: 207 | From san francisco, ca | Registered: Mar 2005
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posted
I did. Had it for two years before diagnosed. Treated for about a year. Now I'm working out five days a week playing golf tomorrow. Got engaged a few months ago... I think I have a bit of a Candida problem but I'm keeping it under control. Am I completely well? Who knows, but right now I feel like it. Posts: 635 | From Texas | Registered: Mar 2004
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posted
I am well and fully functional...maybe not cured (a few little flares at times) but I am well. I was three yrs undiagnosed...and had reached the point I could no longer work or read or focus well...much neuropathic pain & discomfort especially at night....thoracic nerve roots badly affected but didn't figure the cause of those sx till after dx. Made out a trust & prepared to die. (The 15 doctors I had seen could not determine what was wrong) 5 yrs of a variety of oral abx + some other stuff...improvement most from yr 3-5. (First 2 yrs of rx much herxing off and on.)
Everyone seems to be a little different in sx and responses to rx. However most seem responsive to rx given time and variety of abx etc.
posted
It has been 7 years since i was first diagnosed. I have been completely off antibiotics for almost 2 years now. I feel much better now than I did and I would have to say that I am probably 85% better.
I have severe osteoarthritis, but most of my neurological symptoms have completely disappeared.
yes, some people do get better. i am one of those people who have lurked off and on over the past two years and now i am back to offer any support that i might be able to.
kathie
Posts: 3 | From fort myers beach, florida | Registered: May 2005
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posted
It's good to see all the positive responses for this thread!! As for myself, I have made somewhat of a upswing in my overall wellbeing. It seems that that since discontinuing my course of Doxy and starting back on Ceftin, I have made some noticable improvements. The first several days I did notice some herxing but now I'm feeling pretty decent. Thanks for all your stories! Sam.
Posts: 183 | From Craley, PA | Registered: Jul 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Two and a half months ago, I started an antibiotic combination that hit Lyme, babesia and bartonella at the same time. After five years of being almost completely disabled with constant fevers and exhaustion, I am doing a tough exercise program, working, and experiencing almost no relapse symptoms.
Also, I've experienced the key factor in any trustworthy health recovery: my life is being turned upside down. Old friendships are ending, new ones are forming, I've outgrown nearly everything in my life that was built around a defensive, limited, or low functioning reality. That does not happen unless you know, on some level, that you won't be needing crutches anymore.
It's also very hard to come back to this board, and I do so partly from concern for familiar people, partly from guilt, and also because I'm going through a transition back to full-time living, and am still seeking my new niche. But what others said is true. When your health is back, you don't feel so drawn here, no matter how grateful you are for the help you received.
But I will stay on maintenance abx, and would rather face the side effects from that than even worry about a relapse. If you think about it in the same category as diabetes or MS or HIV, a chronic condition that must be treated with respect but that can also be controlled, you may not feel as frustrated, and also may feel more empowered to seek out the abx combination that will work for you.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Liz
If you 'start to vanish' from this board would you update me via email. I am also on Ketek and have been following 'your story' and interested in keeping in touch to see how you go.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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