What does "remission" mean for us?

Hi, Lyme-oriented folks,

The recent post about remission has me thinking about this. I don't know what remission means for Lyme.

"Remission" seems like a word that has different meanings to different people. How do you define it? How do testing and symptom resolution play into the definition for you? What do your health care practitioners and other favorite Lyme resources think?

I hope to read the diversity of opinions, not a debate. This is such an intense condition, and its presentation varies so much, but I think we all can benefit from having goals in mind - and holding onto the idea of feeling better one day!

Thanks!

Personally I consider it to be when one is virtually symptom free, infections are under control, and various illness cofactors have also been reined in. But some may have residual issues even once remission is reached. I also think one can reach a good point without achieving remission where we are happy with quality of life, having achieved a livable and adequate homeostasis.

k07 said...
I’ve been thinking of this as well. In my mind, remission is symptom free.

I have not treated in over a year, and I’m no worse maybe slightly better. I guess it could be considered remission by some. I feel like there’s still room for improvement.

Are your current symptoms minimal?
Can you work, play etc or do some symptoms hold you back?

“At this point, i wouldn't even think to say "remission "without at least a year or two of symptom free. But I've had this a long time... lately I've heard the word remission used, where in my head I'm just thinking "oh dear it's only a matter of time"”

I certainly won’t wait for two years of symptom free to claim “remission”

If I’m symptom free for a month or two ... I’ll use the word remission ...and hope to not relapse.

I know several people who are in remission - no relapses - not everyone does relapse...

They’ve been in remission for over a year - so I’m optimistic/hoping they won’t relapse. But even if they do at some point - they still HAD a period of remission.
Its different than saying cured.

A year is a long time !

You’re more patient than I am.

With Dr J I will soon be on meds just 3 days per month but I’m not symptom free yet.

It will be a good gauge to see if any of my symptoms that have resolved come back

I’m currently taking abx for 8 days a month -

Do you all feel that being on herbs for maintenance or just a few symptoms constitutes remission?

I feel it is not because you are still "treating".

Do most llmd's keep patients on herbs for maintenance? Mine has said I may need to be on them for life. They are expensive so hoping to not be!

Thoughts?

Last time I was in remission, I'd actually say I considered I was after a few months, so I guess remission is different. I was in remission until 2017 so it was a few good years actually. I took advantage of it (in the bad sense of the word) and now I'm almost as bad as I started. I hope my new doc knows what to do. But I finally finished school and moved out for a few months and functioned on my own, was active and made friends and did normal things including drinking sometimes, though I couldn't hold down a job still. I'd consider that remission.

Girlie, I just couldn't find a job because I had a degree, which overqualified me from a lot of jobs, but no experience due to being sick, which prevented me from getting all the other jobs.

There needs to be a better term for this "remission", that said, I guess I've been there for a while now. No more body damage is accumulating, still slowly healing, and don't herx on herxable herbs / supplements.

There are more than a few long term lymies who have waxed and waned in the past with this too, before they ever treated it. This happened to me years ago several years. I have no idea if my immune system caught up to it only to get over run, or if it were a new infection when this got worse. What I do know is I was exposed to ticks for many years.

Thanks, truly, to everyone who offered a response on this thread.

For me, I think it comes down to reliability. I want for my ability to do things to be reliable, within reason. I am fine with taking extra good care of myself, a few restrictions, some supplements - but I ardently aim for a time when I can make plans and keep them, and trust my body basically to work as I expect most of the time. Feeling like I can participate in the world, instead of treatment and illness being my round-the-clock occupations.

Last fall I made a new friend I saw once per week for several hours, and I was curious how long I could go without telling her I had Lyme. Normally I am very open about illness, disability, and everything else, but after a very long spell of being quite limited, I felt oddly pleased to be able to avoid disclosure. I am emphatically not ashamed of being sick, and I believe it's important to feel centered in the present even when the present is hard and not ideal, but it felt good to have the option, for once, of seeming somewhat healthy.

When I was 22yo, I contracted Lyme and several co-infections. I was very ill, undiagnosed and untreated, for two years. And I got better, without treatment aside from meditation and massage. All the way better - symptom-free, able to push hard. A decade later, I had been worn down by various life events and stressors, and was exposed to a few viruses in close succession, and boom! Very sick again, worse this time at age 33. Eight months later I was diagnosed and finally started treating and figuring out what was going on. I've been treating for three years now, and I can't help but wonder sometimes what the missing pieces are this time. I know it's not typical to get better without treatment, but it changes my perspective a little, trying to figure out which things that are different about my life now could be holding me back, when I feel like I'm being so much more mindful and relentlessly proactive!

Anyway, thanks again everyone! Really means a lot. Questions like this make me feel like I'm getting to know you all a little more, too, which is nice.