Topic: Does Lyme Ever Really Go Away or Just Remission?
momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I have heard conflicting stories about whether or not Lyme goes away.
I have heard that if it is caught early, it can go away.
I have heard that if its caught late and spread throughout the body, it never fully goes away. It just goes into remission.
I have also heard that it can go away completely if caught early or late.
Does anyone not test positive anymore after treatment? Or will it always show, like mono does?
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
From what I know....(and this could be wrong)...
As long as you catch it within two weeks and get on a treatment plan including some form of antibiotic, you will most likely kill it before it gets you..
However, if you do not get it figured out, or do not get the normal signs to help you, you lower your chances considerably each week there after as it spreads.
The organism has an extra thread of DNA in which it has alien like abilities. It will have the chance to hide or cyst up. From what I believe, if you stay positive and manage to get with the right LLMD and treatment plan for your special needs and/or co-infections you could defeat this late but from what the "experts" say, the "cure" is unknown at this point for Chronic(late stage) Lyme.
Testing is getting better but will not always show.
So, I think some of what you hear is strong belief and other is opinion(right or wrong). I myself have not given up yet, but I know there are days I am close. Hope this helps!
Posts: 30 | From Colorado | Registered: Feb 2008
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TF
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Member # 14183
posted
I had undiagnosed lyme disease for at least 10 years.
Finally a doc thought to test me for lyme. So, I was sick for a long, long time before I got treated.
Still, with good lyme treatment (Burrascano protocol), I got rid of my lyme, babesiosis, and bartonella.
It has been 5 years since I completed my treatment and I am still symptom-free, enjoying my life.
Since completing my treatment, I went through 2 very stressful years, 2 epidural injections for a herniated disc (this is a steroid injected into your back), and also got bit by another tick and got the bulls eye rash.
Still, my lyme disease has not recurred. I was treated by my lyme doc for the new bite I got in Aug. 2008, and after 30 days of meds, I was done. I did not get any symptoms from the bite except the bulls eye. I was treated within a week of the bite, treated for lyme and all coinfections.
So, I say I am cured. I have never had occasion to request another lyme test. So, I don't know what that would say. But, since the test is for lyme antibodies and not looking for the lyme bacteria itself, I can imagine that I might still have some antibodies to lyme in my blood.
What I'm saying is that testing positive for lyme after you have had lyme does not mean you currently have lyme disease. It means that you currently have lyme antibodies in your blood.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
My doc told me he thinks it can only go into remission and not be completely eradicated from your body.
However, there are people who have gotten rid of their symptoms and then not had them come back for years, or for the rest of their lives.
The test only looks for antibodies, not for the actual bacteria, so it could show positive even if you had no more bacteria in your body.
On the other hand, it often shows negative every time, in people who are heavily actively infected.
The only definition of "recovered" that I've heard being used is that someone has stopped treatment after 2 or more months of being without symptoms, and then the symptoms have stayed away.
Some people have relapses, and some people get bitten again and reinfected, and some people continue to feel well.
In theory, if you kill all the Lyme bacteria in your body (and any other coinfections you might have), then you are completely cured. However, if you succeed in doing this, there is no test to prove it.
People may feel strongly one way or the other, depending on their own experience, but there is currently no way to prove when the infection is gone.
It might actually BE gone--the first clue you would have that it wasn't would be if you had a relapse.
So your goal is to get rid of your symptoms, and when you have, you are recovered, whether you call it "remission" or "cure."
Some people feel more hopeful to refer to it as a cure, and others feel safer to be cautious about trying to prevent future relapses, so pick the one that helps you the most, to stay optimistic and keep fighting for your health.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Testing cannot determine if one still has lyme or not as it can go dormant.
While the "cure" may be unknown, the author of this book details how she managed to get better. She is doing quite well, all things considered.
Some libraries carry this book. Here's the Amazon link:
posted
I was told by my LLMD who is president of the ILADS that I will always have Lyme. It isn't something like the flu that you can rid your body of. He did go on to say, that I could go into remission and may never show signs of Lyme again. But Lyme could also rear its ugly head at any time in my life. At this point, I am just looking to go into remission......
Posts: 84 | From Seattle, WA | Registered: Sep 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Wow, Limeaid, those are some heavy duty words. I'm digesting them right now...it might take awhile...
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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djf2005
Frequent Contributor (1K+ posts)
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posted
It goes into remission, which for most, is more than welcome...
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It depends on the case. Some patients experience permanent clearing of symptoms based on long term reports, while others experience remissions punctuated by reoccurring flare-ups.
It is my opinion that the infection is difficult to eradicate once in the deep tissues, bone, ligaments and collagen tissues. A solution does exist, but we have yet to find one which encapsulates a majority of the patients suffering from Chronic Lyme Disease.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
lymeinhell
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Member # 4622
posted
I choose to call it Peaceful Coexistence.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I agree that remission is very welcome, but it breaks my heart for all of the children that have Lyme.
I hope that someone soon will find a true cure for this horrible disease.
It's bad enough having it as an adult, but it is awful to watch our children suffer with it.
And then after everything they have to go through to get to "remission" to know it can come back on them at any time......grrrrrrrrrrrrr
posted
LLMDs that say Lyme is not curable are ridiculous. I've heard 2 LLMDs say some form of it will always be living in your cells somewhere. Maybe that's true and maybe it is just job security but either way, if you can kill the bacteria with antiobitics and never have symptoms of Lyme again...in simple terms you are cured.
I have heard LLMDs and patients say that some people finish treatment and never look back. To me that is cured. A patient that hasn't had Lyme symptoms in years and doesn't use any maintenance antibiotics is CURED.
I don't care what kind of antigens or remnants the bacteria leave behind, so long as I don't feel sick anymore.
I am not saying everyone is curable but from everything I have been studying and all the doctors and patients I have spoken to over the last 21 months, definitely many people have been "cured".
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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ping
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quote:Originally posted by migs: ...I am not saying everyone is curable but from everything I have been studying and all the doctors and patients I have spoken to over the last 21 months, definitely many people have been "cured".
migs, I appreciate your zeal, however, in context to a number of posters on this site, myself included, 21 months is not a very long time to have "spoken" to people, or to have been researching these infections.
As I just posted on another thread, I spent 5 years in abx tx and am a bit over 3 years in REMISSION. Reason I use that word is because I've known a couple of people, plus, seen a few posts on this site that indicate that even after numerous years of no sx's, a trauma to the body can cause sx's to return.
momintexas - I'm sure there are many people, probably not posting on this site, who have been through TBD tx and are sx free for many years. Don't let the 'nit-picking' between definitions of CURED and REMISSION be a stumbling block to you. Once the patient is asymptomatic, then it's a wonderful thing. Yes, they might have a return of sx's, but then, they might not; at least they will know what it is and can seek immediate tx. All you can do is what you're able to do. Go for it and enjoy life when and while you can.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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momintexas
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Good advice ping.......you are right.
Enjoy it while we can.
Posts: 1408 | From Tx | Registered: Nov 2009
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ping
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quote:Originally posted by momintexas: Good advice ping.......you are right.
Enjoy it while we can.
Yes, ma'am. Glad you found us, fellow Texan. Not glad you have TBD, just that you found an avenue for LLMD's and real help with everyday matters.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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momintexas
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This site has been a wonderful resource.
Great information and great people.
I've learned SO much from here.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Like many bad infections, I feel like Lyme, even if it seems like it is cured, has the chance to once again run crazy in your body if after remission steps are not taken to keep your body and system in tip top shape.
Obviously some things can't be avoided ie life traumas and whatnot-but I think maintaining a healthy support of detox, stress reduction, rest, exercise, DIET (most important thing of all), and overall good sense can cause a remission that lasts a lifetime. However, I have seen and experienced first hand just how Lyme can come back into your life just when you were starting to think it was gone for good.
With something like this, I compare it to cancer-remission, and some remissions act as cures, but not caring for the body or dealing with a major life stressor can cause the body to weaken enough and allow disease in general to take a grip on your system.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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TF
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posted
Smoking and drinking alcohol are big things that can cause lyme disease to come back.
One lyme doc told a friend of mine that she believed she would relapse if she went back to smoking.
If you drink after getting rid of lyme, it should just be one drink per day. No more than 2. And, I wouldn't drink every day either, by any means.
Lyme is not the only illness that cannot be totally eradicated from the body. Neither can chicken pox. So, everyone who has had chicken pox and gotten rid of it is really in remission, not cured.
After age 60, many people (I think the statistic is about 50%) get a recurrence of chicken pox. It is called shingles when it comes back the next time. When the immune system is weakened, the shingles can emerge.
Also, cold sores are a virus that you never get rid of. It lies dormant in the body until an imbalance of arginine and lysine allows it to re-emerge, or too much sun, stress, etc.
All this to say that we should not think lyme is unique in this way.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
You have to think about how many people have moved on in their lives and do not post here anymore.
If you ask the people here, many will say remission is the goal. If you ask the people that haven't posted here in 3 or 5 years because they have pretty much forgotten about the Lyme nightmare, many of them would say it is curable.
Some people won't cure it but it is curable. To me, an extended period of years without symptoms is cured.
Good point on the Chicken-Pox. My buddy has a hell of an ugly face from shingles sometimes but he doesn't tell people he has Chicken-pox. I'd take something similar to go off these damn pills!
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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sutherngrl
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My LLMD uses the word Cure! Right now I'm just wishing for remission.
What Migs said is true. People that have been symptom free and moved on with their lives say they are cured.
To me remission is when you first get well and there is that good chance for a relapse. If you don't relapse within a few months, chances are you might be cured. I think if it shows up years later, you were reinfected. Thats just my opinion.
Lyme is a bacteria. If you absolutely irradicate every single spirochete, then you are cured. I think that is possible if you treat long enough after you are symptom free.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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canefan17
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Bacterias, Fungi, Molds, Parasites...
They never go away. We(not just Lymies) will always live with these in our bodies.
But if you build up your immune system and subsequently an eco-friendly environment in your gut/body... peace and harmony may be obtained with them. : )
That's the goal we're all going after.
Call it what you will.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
If you ask the famous Dr. J, he would tell you that lyme is curable in children. He has seen it many, many times over.
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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sutherngrl
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What Canefan says is true.......and we also have cancer cells in our body, but that doesn't neccessarily mean that we have cancer.
When ppl fight off cancer and get well, they are "cured". So I guess its just whatever you choose to call it.
To me "remission" makes it sound more like an autoimmune disorder, so I choose the word cure! At least once I feel cured. It may take a year or more of remission for me to believe it is indeed a cure. At that point I say cure!
It would be the same with cancer. As a matter of fact that is how they use those 2 words in cancer. First you are in remission, then after a few years of no cancer, you are cured.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
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I agree with Ping as well as many of you. The bottomline is that you have to persist in finding a treatment that beats the infection down. Whether you cure it or simply go into remission isn't something you have a choice over. You simply must not let up, and you must keep pushing and fighting to get well.
Patients have gone decades in remission only to fall ill again. Is it a relapse or a new tick bite or some other infection?
Patients who can't even get into remission after a decade of treatment -- are they experiencing an autoimmune condition even though they're cured, or are they not cured and still have an active infection which instigates the AI response?
We don't have enough answers to conclusively say much of anything. All we know is you've got to assume it can be cured, and get aggressive and educated so that you can hit all the angles that contribute to this complex disease process (includiing co-infections).
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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