How do you plan to stay in remission once it's achieved?

If you're someone who has relapsed, what would you do different?

First time I think it was combo of not enough initial treatment (1991) and being re-infected. (2001)

Second time is now and I am still trying to figure it out. LLMD says it is because I never treated the other tick born illnesses. I am currently treating Babesia.

It was VERY sneaky...even for someone like me who was very aware of her body and lyme and needs. It presented as a shoulder injury that eventually progessed (in 4 months) into neurological lyme symptoms. I did not want to believe it was back and stayed in denial for some time.

BUt also I didnt have the same symtpoms I had had in the past at first. So that was confusing for me.

I was staying strong and healthy. I was training for a triathlon. Now I can barely get out of bed some days. I don't know if I believe the staying healthy part. I know that sounds weird, but two years ago I had to have two surgeries and was not well, but nothing to do with lyme. My lyme did not flare THEN, it waited until I was the most active and healthy I had been in my life. I don't understand that at all.

I'm currently experiencing alot of depression, night terrors, rage. Part of me knows the struggle is part of the process. Another part just wants to give up.

I, like everyone else, never want to go through this again if I can help it. Hence, once we're well how do we stay well. I thought it would help to focus on that, something positive.

I don't know if my logic is making any sense sorry.

Trailsgrl, I think you make a very important point, this disease is "very sneaky". I've heard others with similar experiences to yours. Feeling well, living a healthy and full life, listening to their bodies and relapse for some reason.

We're all working too hard to regain our health. I think it would be good to research and exchange ideas specifically around staying in remission. Maybe even starting a support group, newsletter etc.

When people talk about maintenance abx, do natural ones count? If so what about treating with natural abx part of the year just to make sure?

How about doing vitc/salt on and off?

I've heard rife works for some.

Would it be helpful to get yearly tests in addition to watching out for symptoms (Igenex, blood chemistry etc, live blood analysis, intracellular mg levels)?

BTW, what is the maintenance part of the marshall protocol?

Anyway, I'm rambling. I know also that each person has to find their own way.

LymeEd and Cave76 great thoughts, good tips. Thanks. Wishing everyone a speedy and permanent recovery.

[This message has been edited by DolphinLady (edited 21 May 2005).]

If any herxing occurs you will be the first to know.

Skyking, are there any studies or more info about the longterm effects of rifing? Are there any risks at all? Is there more info about people using rife once in remission? BTW, congratulations on your book. I am interested in rifing, but am on abx (making progress thankfully) and I know this is not an ideal combination.

Tvalentijn, thanks for the heads up about CRP.

I will not consider going off abx until:

1) I've been symptom-free for six months,
2) I am doing daily aerobics, stretching (especially yoga that cleanses the thyroid and liver), and weight lifting with no relapses,
3) I am holding down a full-time job, and have enough money saved to go immediately to the LLMD of my choice and get abx if a relapse does occur.

In addition to treating the co-infections, one of the most important actions you can take is to build your self-esteem. Don't let anyone tell you that it's a sign of maturity to accept being disabled if there's a chance you can get better. Also, don't let ANYONE tell you this is some female thingamajig. That's cop-out #1, Exhibit A.

For me, a lot of the emotional stuff was caused by systemic inflammation. A lot of people swear by bromelain, and I use another natural product called theanine. I also love Celebrex, but obviously it's got issues.

I agree with trailsgirl as I was on the best nutrition program and taking the best care of myself that I ever have when I got the sickest.

My opinion is stressfull exercise like running and aerobics are too hard on the body and lyme takes advantage of this. It takes time though and you don't realise what is happening. I was right into aerobics off/on for years, but always had a gut feeling it was not all that it is claimed to be as a good health habit.

Less vigorious exercise seems to be the key, and strong muscles from strengthing.

Everyday thank your lucky stars.

Sing in the rain. Dance in the sun.

"Rife machines are affordable" is a relative statement. I don't discount that they are useful but, they are pretty costly, in my opinion. I had to go the low-cost route with Rife and am afraid to turn it on because I might fry myself, since I did the siring. I think you need to spend a bundle to get a good, already built one with all the frequncies enetred in.

Just thought I would add that in case people did not realize that Rife machines can run from $700 to $4,000 for home models. That's a few car payments for some of us.

Please know that I am not disputing that they can be beneficial.

Bc