Remission!

I know I don’t post much but I wanted to let you guys know I have reached remission. I got my picc line pulled this week and it is so weird to not have anything in. I had my picc line for over 18 months. I have been treating Lyme for almost 2.5 years and was sick before then for nearly 20 years.
I’ve taken countless oral antibiotics, herbals, and antiparasiticals. I’ve gone through some very heavy duty IV medications.
The journey has been so very hard but hopefully the worst is behind me.
I still take some herbal tinctures for babesia, Bartonella and Lyme. They are Sida Acura, A-Bart, and CockTail. I am taking some various mushroom blends for immune support. Liquid PC for brain fog, Stamina SR and NAD+ iontopatches for fatigue.
I am working out regularly for the first time in years. I have been doing indoor cycling because I tend to get pain in my large joints when I walk for any distance. But I am feeling so good after I work out, for the first time in my life really, I can do cardio and I don’t want to die afterwards. I even get that endorphin rush I would hear tales about, it’s not a myth! lol!
I think I will always bear scars from this battle. I may never shake off the chronic fatigue without the help of supplements, I still get migraines if my body is off balance or I increase herbal doses, and my joints may always experience some pain when overused. But I feel like my life is returning. Not only does the disease itself cause pain and damage but years of heavy duty antibiotics and medications also cause damage. I’m working closely with my LLMD to help heal the damage done over the years and slowly slowly feel better and better.
I am cautious about pushing myself and rest when I need to. There’s a level of fear and trauma that goes with having an illness like this. I try not to dwell on the what if’s and the ways I’m still held back, but it’s hard to let it all go. I’m scared of letting those I love down if I were to get sick again but I try to remind myself that’s nonsense and I need to be grateful for the now.
I have been working with PFM (Bay Area) and have seen both Dr. H and NP YS. They have given me my life back.

Congratulations!! Thank you for sharing! Good luck with your continued healing as you return to normal life! <3

Girlie said...

Question: How did you and your Lyme docs determine the joint pain, migraines and fatigue (if you don't take supplements) are damage - and aren't active infection?

And...did you feel good for a few months before stopping?

I don't know how I will know when it's appropriate to stop...and let the body heal.

This is the hard part. I don’t think there’s any hard and fast rule. I don’t even know myself! But my huge laundry list of complaints has dwindled down to just a few things, I was able to slowly start doing more, my migraines respond to meds now and are less often and less severe. Also I went off treatment for a while to see if things got worse or stayed stable and I was stable. My doc mentioned how some of my lingering symptoms can straight up be from the treatments themselves.
I had to adjust my expectations. I realized I could never expect 100%. I was sick for way too long. But the longer I’m off antibiotics, the more energy I feel. I don’t think many people mention or talk about what remission feels like. We are still healing when we hit remission. There’s much recovery to be had after all that killing. And sometimes there’s permanent damage. Or it feels permanent until one day you notice that it doesn’t bother you much anymore.

So truly happy for you!!! Thanks for sharing this with all of us!!

Great to hear, good for you

Fantastic news! congrats on all the progress and recovery!

jb1994 said...
Nice, what helped you the most?

Definitely the IV meds. I’ve rotated through so many, but the last round of meds was the most helpful. It was specifically for persistent, treatment resistant Lyme. It was daptomycin, invanz and doxycycline IV for them all. After two months or so of that, I finished up with a 10 day course of IV gentamicin.