Topic: Can one truley be cured..or just in remission?
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi:
I'm currently reading "Cure Unkown" by Pamela Weintraub. Very interesting.
One thing she discusses is how research in animals has shown that even after high doses of antibiotics they are still able to find traces of Bb in animals even after treatment. Some times the Bb is altered so it can't replicate or cause problems. So it is there.
For those of you who are cured / well and off meds...do you truly believe you have killed off all of the Lyme & co...or is it just to a level where you don't have symptoms and your body can keep in in check? If the latter, do you worry it will come back should you ever get worn out or stressed?
Just curious?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Don't we all want to know the answer to this question?
I am not cured yet. I have been sick just over a year, and have just started seeing small signs of improvement, so it's turning out to be pretty persistent in my case. An LLMD has told me that remission is possible and very likely for me, but that the bugs always stay around. I think there is a lot of debate on that question right now because the science is not conclusive about whether it always persists, or only sometimes.
Since research shows it CAN persist after the most intensive antibiotic treatments, and no test can prove that it's actually completely gone, and some people have reported relapses after getting exhausted or stressed (though others have not), I think it is prudent (after recovery) to act as if it could still be there and take care of oneself as if it were. If it's gone, it won't hurt you any to be living a healthy and low stress lifestyle, right?
However, living in terror of a relapse is not going to help one's health, and may unfounded.
Some people on here have reported that their symptoms have gone away and not come back, so I think it is also possible to recover to a point where either it is gone or your immune system can keep it from bothering you. I will be happy with either result.
I don't know how we can get through life without ever getting exhausted or stressed, but I'm trying to reorganize my life in ways that reduce the frequency of occasions where that is inevitable.
-------------------- 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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posted
I think it's unlikely that every single bacteria is killed. With ART testing it shows that Lyme is no stress on my immune system whatsoever, so I don't believe I'm in a continual battle with it. I've definitely gotten the upper hand.
We have SO much bacteria that live in us, and it needs to have a certain balance good to bad. I think it's more likely that I've just achieved a better balance.
Dr. W in Germany believes that it's likely that the Bionic 880 changes the frequency of the borrelia so it's not a problem anymore. That could be the case.
I am more concerned that I get bitten than that it comes out of remission, but we all know it can come out of remission, which is why I work so hard at changing the terrain. I know from testing at my chiro's office that I'm still somewhat toxic (not bad, but not optimal), so I am always working on toxicity.
I am always also working on building back my gut. I think that Lyme and treatment really has an ill effect on our guts. Not to mention my family history is full of gut problems anyway. So I'm also eating lots of ferments to make the gut healthier.
I also exercise to stay in shape, oxygenate the body, and keep toxins moving.
But I am also living normally .... yesterday I taught pilates, then went to the Memorial Day party at the pool and had a couple drinks, then sat on the front porch and watched the storm roll in ... that was after spending the day at the Indy 500 the day before in 95 degree heat. Today I'm fine.
You just can't worry about it all the time. Any of us could die in a car accident tomorrow, you just can't worry. Do smart things to avoid getting sick (which we should do anyway), and live life.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
You and I always have the same exact thoughts. I guess all the newbies think all these things in the beginning. Do you find yourself thinking about it all the time? or always have it in the back of your head no matter what you are doing? I do.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Six...you always make me feel better. I have read your story and the hell you went through. It is so nice to hear you are better and well, loving life.
I'm not nearly as bad off as most here. But I still get bummed out (like today) as I worry I will have to deal with this FOREVER. I don't want to be afraid to go outside, nor do I want to live in a bubble. I want to LIVE.
6 month ago we were planning on renovations we were going to do on our house. now all is on hold as we don't know how long I have to treat this and how much it will cost.
I'm on day 22 of treatment and I have to say that this past weekend I felt the most normal that I have felt in the last 4 months. Not 100% mind you, but pretty good in general. A good sign!
Today..I've got some fatigue and my mood is down. Maybe because I'm at work.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
BackinStOlaf:
I think it is just a sort of grieving of the life I used to have. I care-free life where I didn't have to worry about what I ate or meds i had to take.
It's the fear of ending up like some of the worst off Lyme patients on this board, or shown in "Under our Skin." I'm no where near like that...but I don't want to be.
I want my old life back. I know many here have gotten it. I have read up to 80% or more of disseminated cases can and do get it back with proper treatment. I want to be in the 80%.
I'm a bit down today, so i think about it. I have to say, over the weekend, I felt pretty good and didn't think about it much. I felt I WOULD get better. Today I have more questions.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
It might be that you did too much over the weekend and today you're feeling it. When I had good days, I tried to only use about half that energy on enjoying it and half on resting so my body could use that energy for healing.
It takes energy to heal and to detoxify, so it's important to not expend all the energy when you have it, even though it's tempting to enjoy it while you can.
Keep fighting and KNOW you will get better. Attitude won't make you better, but you can't get better without the right attitude!!
It's funny, we live in an old house and the master bath needs renovating. I just can't get motivated to do it. The money is sitting in the bank waiting .... and I've done nothing. It just seems to petty compared to what I've been through. We did redo our kitchen when I was at my sickest .... good timing since I was too sick to use it then!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymie_in_md
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Member # 14197
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I'm in remission like six and have been for sometime. I didn't use the bionic nor did I go to Germany. Instead I started with lightworks and graduated to the PE1 similar to the bionic in power. I've also learned this device is very powerful and needs to be used with great respect and care. And there are no practioners to guide you for using this device. When I get a chance I'll write my thoughts as far as using the device, when to and not to.
And there are folks who say not to use it. To me that's like saying don't go out into the sun. If you stay out in the sun for 8 hours without a top or sunscreen, gee!!!! ya think you might have over done it. Many folks who have used light therapy may not have used it appropriately and had a bad result. I was lucky, I used the lightworks first, which isn't as powerful as the PE1 or bionic 880. So I kind of worked my way up to the PE1.
The point is! you have two folks (six and my self) who are living normal lives who have used the LED successfully. The question: how do we use this technology as part of an overall treatment methodology?
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Yes, Bob, Dr. W. really stressed not to overdo it, that REST from the light was as important as using it. I improved in my time off at least as much as my time on. The body needs time to adjust and to detox from the work the light did. Plus, the photons KEEP WORKING for months after use, so you don't want to keep piling it on. It has a cumulative effect.
I do think the answers lie in LED lights ..... I just think this work is in its infancy.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymie_in_md
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Member # 14197
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Our cells are like little batteries of light, when they are not 100% charged they pull in enough to fully charge. Otherwise the light passes on, so I don't think you can overdose on the LED. However, light is a great detoxifier, and too much light at once can overrun the detoxification organs. I've seen it happen, a women I know of used the device for 45 minutes. She was sick for 8 weeks after. The good news, she was much better and has remained much better since. It seemed to balance her fluids in her body. Her shiatzu message therapists could finally get to her muscles, all the excess fluid had dissappeared.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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quote:Originally posted by sixgoofykids: I also exercise to stay in shape, oxygenate the body, and keep toxins moving.
But I am also living normally .... yesterday I taught pilates, then went to the Memorial Day party at the pool and had a couple drinks, then sat on the front porch and watched the storm roll in ... that was after spending the day at the Indy 500 the day before in 95 degree heat. Today I'm fine.
You just can't worry about it all the time. Any of us could die in a car accident tomorrow, you just can't worry. Do smart things to avoid getting sick (which we should do anyway), and live life.
reading this almost made me cry... I just want to figure out what is wrong and get it treated so I can be normal again.
Also, with the treatment of lyme I believe it is so unknown... There are over 200 strains and differences in which area of the country or world you got them from.
Can some of them be completely wiped out? Yes. Can some of them be put into remission and you can lead a normal life? yes. I believe all can be "cured" however you want to view that word, but maybe that is just me being hopeful.
Posts: 286 | From St. Louis | Registered: Dec 2009
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I have been in and out of what you call "remission" 4 or 5 times over the last 21 yrs..IMO - you never completely wipe out the disease once you have had it longer than 6 mos without adequate treatment..That being said-lots of exercise-keeping STRESS to a minimum,healthy low carb low sugar diet,resting as soon as you feel tired,lots of water...and you can be symptom free for many years...my longest period was 7.5 yrs...just dont get lazy and take excellent care of yourself...
Posts: 27 | From delaware | Registered: Dec 2009
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posted
forgot something important : NO ALCOHOL...the toughtest one of all.
Posts: 27 | From delaware | Registered: Dec 2009
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lymeinhell
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Member # 4622
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I like 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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