Just wondering how many are on treatment and feel that they are stable. I don't mean running
down the street screaming, but just take minute by minute and hopefully that will finish up a
day on treatment hopefully that will turn into the next day more ok. I teach and I just wrote
a test out for my kids, but I feel like I barely know the people I live with for the last 15
years or myself. Sick, huh? Also, when you get back your life and I mean when, everyone works
so hard to get well, would you stay on orals as maintenance or get off waiting to crash again?
At this point, if God gives me my life back, I'd be afraid to chance it again because you don't
know how long you're going to be ok for before a stress related major downhill. Thanks.
Posted by Keebler (Member # 12673) on :
- One would never just stop cold turkey. One should be well for at least two months before stopping treatment. There are also many different complementary approaches to be used during breaks and as the stepping stones with remission.
At the point of remission, most lyme patients are keenly able to read their bodies and know how to make adjustments when needed. No wise person who has gone through this would set themselves up for a crash. Excellent self-care is a life long tool that may be all that is needed most of the time to remain in remission.
Right now, focus on today. What needs to happen today to help your body do what it needs to do. Then, tomorrow.
If you want to know whether success is possible, yes, it is. Many go on to good remissions and fuller lives. In the meantime, be sure to enjoy (or at least appreciate) some things about each day.
Good luck. -
Posted by lyme in Putnam (Member # 11561) on :
thanks Keebler
Posted by painted turtle (Member # 7801) on :
Hey Lyme in Putnam. I was diagnosed in summer of 2005 and immediately went into treatment. I may have had undiagnosed lyme since the mid seventies when I was bit by a tick as a child. That is something I will never really know.
By the time I was diagnosed, I was beyond, I mean waaaaay beyond myself. So I recognize some of the things you are going through. (not recognizing family, self, etc.)
The last year and a half or so before I was finally diagnosed were really bad for me.
Anyway, I treated lyme and babs with antibiotics and anti protazoals and alternative stuff first with an LLNP then with an LLMD. We all did the best we could.
It is nearly 5 years later. I stopped all antibiotics about 2-3 years ago or so. I could no longer imagine that they were going to get me to the point where I would be symptom free.
It was my philosophy that the rest of what I had to do was going to involve some spontaneous and time kind of recovery (lots of alternative treatments).
I can safely say that I no longer experience the kind of stuff you are going through right now but when I did, it seemed like it would never end.
I am still with many symptoms but the worst of this thing is over for me. I still have episodes of deja vu, but that's nothing compared to the insanity that entered my brain.
If you stick with it, make hard choices and really listen to yourself...it's likely you will get through this and be able to look back on it some day and (if you remember!) say........ wow...glad I'm not there anymore!
Posted by Fordace (Member # 14874) on :
hey neighbor, hope you get better soon. I'm back on the IV Rocephin for the past 7 weeks and finally thinking clearer (all day long). The weakness is slowly fading.......I don't know how long I will stay on the IV this time, but I was on 10 weeks about 2 years ago....feel better...
Posted by ping (Member # 6974) on :
Lyme in Putnam - I sort of ditto painted turtle. I was in tx for 5 years and now off for a bit over 3 years. You might not get rid of every, itsy, bitsy sx, but it's far better than when I was in the throws of TBD.
It does no good to be afraid, in the way that you've described, after getting off tx. My old LLMD says that it's very common for Lyme pts thinking to get "caught in a loop"; don't remember the actual medical term for it. If you end up with limitations when all is over, then, you have limitations. You will have to work around them, whether those you live with understand or not. It's tough, any way you slice it. Once you've fought TBD's, you're changed forever; some good changes and some not so good, but you make it through.
![[confused]](graemlins/confused.gif)
just wrote