posted
I've never been "sick". The only time I felt sick was during the first couple weeks of treatment. I haven't had a "bad" day since. I didn't even catch a cold this winter.
My right eye is irreparably screwed up because of Lyme, and though it's been pretty bad to the point of having surgery a few months ago, that's been the worst of my problems. I have minor joint pain that comes and goes and I seem to have a minor case of what my dad calls "CRS" (can't remember s...) but I'm functional every day.
Sounds great, right?
But my LLMD isn't sure how to gauge when I'm better because I'm NOT, nor have I been, sick.
I've been treating for 6 months now and I really don't feel any different now from when I did after the initial herx resolved.
My LLMD says I will be treating for a year but I just wonder HOW will we know when the Lyme is controlled?
I also worry about co-infections. I tested negative for two strains of babesia but I was never tested for others because my LLMD said I wasn't showing any symptoms of one (bartonella, I think) and the others would be taken care of by the abx I'm on, if I do have them.
I never thought I'd be stressing out over NOT being sick. I'm just afraid that the bacteria is hiding somewhere and will come out just when I think I'm in the clear.
Anyone have any thoughts?
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First, I'm so glad to hear that you are doing well. That's fabulous and I can see why it may be tempting to just want to stop now.
But borreliosis can be brutal if it gets its way so it's wise to be smart about this. I can't speak to the other TBD as it just seems so hard to separate.
"Functional" has a lot of room for definition.
It may mean working very well - or at least managing to pull through. Not sure what your definition or expectations are there.
Assuming here that diet is excellent.
It would depend on how you FEEL and how good you are at switching gears and doing all the tasks for work, home, social routines - and some hobby and exercise tossed in, too.
If you can live an active lifestyle and feel relatively good most of the time, that would speak volumes.
Can you think? That's one of my worst problems. It is just so limited and depends on if any noise is around. But, if you can really do whatever work you do and do it well, that is / will be fantastic.
Your father noticing that you have some memory problems - well, that's key detail. Do not take that lightly as you keep working toward a good remission.
Fish oil can help (but you probably already take that). Key antioxidants can help, too.
I assume you are on a comprehensive protocol with nutrient support.
Can you exercise and feel good later that day and the next?
Do you sleep well and awaken refreshed?
No need to answer but those are important to anyone's health. Many with lyme have various degrees of exercise intolerance that can be devastating. Many just can't get good sleep.
And do you feel GOOD? I think humans are meant to generally feel good. Not just "not really sick."
Those are just a few areas that come to mind.
You might consider this new test when you think you've got it under control:
By functional, I mean that I'm as active as I was before I was infected, except for dealing with the limitations my eye problems bring. Many days, my eye is the only reminder that I have Lyme. On "bad" days, one or both of my knees might ache a bit, but not enough to interfere with what I'm doing.
I read about the culture test a few months back. I seem to remember reading that it couldn't or wasn't to be used to measure treatment success. I'll have to look for it again. I hope I'm wrong, though! Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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