Lyme is never "gone", it is controlled by the antibiotics which I will be on for the rest of my life. It takes 18 months for the abx to help you turn the first big curve w/this disease. It's been 3 years for me now and mostly I am symptom free but not totally.

I feel fortunate to be as active and alert as I am, I work 2 jobs and have energy for the weekends but every once in a while I need to just stop and have a couch weekend. The Lyme bacteria is called intra-cellular because it is small enough to live in a cell and stay there undetected. It can remain dormant for short or long periods of time.

A big mistake is to go on and off of abx. If you really want to get off abx I suggest being very aware of your symptoms and when the 1st one re-appears, be ready to go back on. It is much more difficult to regain health when you go back on.

Sorry I couldn't say anything more heartening but at least you know what you are up against and can fight it.

For other people, the best they can get is resmission.

Abx is not to stop until you have been symptom free, herx free and flare free ON antibiotics for three months.

Then you can gradually TAPER off.
Taper is important. SOme patients never actually get off abx, because they keep relapsing, when in fact, ist not a relapse, its the fax toxins being released

and leaving the body, and creating symptoms.

Reduce the abx, up the detox.

I have to say, for what it's worth..

I do NOT believe we can't get well.
..I don't believe that you can't get rid of Lyme.

How, exactly, you do that..and how and when you know you have..
I can't tell you.. and is a very comprehensive approach to health and wellness that is is going to be different for each person.

We, I think..really needed the abx.
Now it's about continuing on to addres the disease and the effects of the medication, state of our bodies..organs...blood.

It's hard work that only you can do, no one doctor or treatment will cover it all for you.

All the best..

Mo

I don't believe the "Lyme will always exist" model will always be true. Over the past four years, I've found that new antibiotics are being developed, and old ones are being used in more effective combinations. The biggest problems can sometimes be finding a doctor who will prescribe them, and having the money for them.

I've also had at least two Lyme doctors withhold antibiotic treatment in order to prove this "it will take years and years" theory. In one case, it was a conscious decision on the doctor's part. In the other, it was probably unconscious, a desire to remain an expert in a field where he was falling behind the times. Either way, if it wasn't for the Internet, I'd have ended up seeing these doctors forever, and paying them, without ever recovering past a certain low point.

So there is no one expert out there who can give you the real story on Lyme, and there may very well be antibiotics you haven't tried that can make your life more manageable. If you take the attitude that you are searching for the cure, and don't let anyone talk you out of it, you may find your way to better and better treatments.

quote:

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Originally posted by Annette5:
HOw do you know when it is time to stop your abx? I am feeling better, but I am just curious as how do we know when we feel better.
Thanks
Annette

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I would get treated after symptoms stop with flagyl and any other abx for at least 3 to 4 months.

Then pay attention to symptoms write down everything and watch after a year off everything and no symptoms for a year (lyme symptoms)then you probaly made it

Then, if you have no symptoms for two months [or like tree said....3 or 4 mo] then drop the abx.

Don't rely on a test.

As to "when" you feel better...only you know best.

For me it was an absence of symptoms upon stopping antibiotics that progessed from a few days to a month, to a few months to several months, to 10+ years.

I'd had LD for a good 5 years or so before we figured out what was really making me sick. My story is included in the following link, along with others who have had treatment successes:
http://flash.lymenet.org/ubb/Forum1/HTML/013250.html

About all you can achieve with this cruel disease is a state of remission. There is no known medical test that can pronounce you 100% "cured".

Linda