Latest appointment. Stopping abx :-/

So, I had an appointment with my LLMD this week, and I'm feeling a bit anxious :-(.

I've been on abx for over 18 months now (except for a 3 month period of herbals at the end of last year/beginning of this year) and most recently have been on rifampicin and minocycline as I felt my problems may be down to Bart (all neuro). I haven't felt an improvement on this combo, in fact I felt worse, and hoped this might be down to herxing (increased tingling, numbness, dizziness)

My doc is now taking me off all abx. I think she wants to see what will happen . . . Presumably if I get worse then she will assume that I am still infected and put me back on abx, but if there's little or no change then she will think the infection is gone (or gone into remission) and says we can address lingering issues with supplements etc to rebuild and repair my body.

The mobility in my leg is hugely improved, and my energy is much better too. I'm feeling brighter. But I still have this woozy/dizzy/tingly feeling in my head :-(. Also a kind of tingly burning feeling up my shins, and tingling in my hands and forearms. Things still aren't right. But maybe she's trying to tell me that this is as good as I'm going to get? :-/

Can the damage in my brain even be repaired with supplements?

Hi Flossie, I'm just about in the same spot as you. I've been in treatment for 18 months and my lingering symptoms are neuropathy in hands, feet and legs. I have POTS so I am dizzy when standing and am having some brain zaps. My LLND says I'm on the last part of the protocol then we can see how do and go back and touch up with various abx's.
I'm very interested to see how you do off abx. Please keep us posted

Hi Flossie,

You might think about continuing with treatment. I think that you were herxing from the Rifampin. That's what your posts seemed to indicate. That made a lot of sense.

Sometimes, it can take a while to overcome that herx and see improvement or, alternatively, you switch meds so that you do see an improvement. I kind of hit a roadblock with Bactrim DS where I kept herxing straight. So, we put it on the back burner for now and switched up my meds. It did not mean I was done.

Only you and your doc can make that call. I can see where there could be some residual nerve damage that's going to take some time to heal. On the other hand, these are pre-treatment symptoms that have not improved. It's a little tricky. Maybe you're not done. Can you ask her about trying different antibiotics?

Most things do improve with treatment. We had a post here about a blind man regaining his sight even! Hopefully, a break will help you figure things out!

Thanks lymiegirl and happyjo for your replies. I hope I've been on the rifampicin/minocycline for long enough to have done some good (two months) :-/. I finish this week. Hopefully it will be ok to stop and then potentially go back on abx at a later date if it proves necessary. I'm just not sure what to expect now :-/. Hate this :-(

That's great to hear that you have some improvement. Nothing wrong with taking a break to re-evaluate.

"I haven't felt an improvement on this combo, in fact I felt worse, and hoped this might be down to herxing (increased tingling, numbness, dizziness)"

Did you and your doctor discuss this--- did detoxing help with the herxes?

In 2007 I had an injury that led to nerve damage that effected my tongue and vestibular system (balance). This had nothing to do with Lyme. It took about 18 months for the nerves to heal, but they did heal completely. I think with Lyme it is possible to have nerve symptoms even after the disease is in remission. Nerves heal slowly. I think Sayaddina's herbal suggestions are excellent.

Thanks so much for all your replies. Yes, I do wonder if this wooziness I have in my head is due to damage in my brain, rather than ongoing infection, which is a scary thought. I just feel that if it's a lesion and/or demyelination then there's no hope for me :-(.

My doc is quite hard to communicate with to be honest . . . I did ask about the worsening of symptoms being a herx, and therefore maybe a good sign, but I don't think I got an answer :-/. I'm going to assume it was though :-/.

Hopefully this break is going to be ok. I just really think I need to be taking something to repair my poor brain . . . if this is even possible :-(.

And thanks so much for your hugs sillysheep - I just got your lovely email too, so will reply when I get a mo . . . thanks so much. Hope you're having a good day today!

Lymie girl - No, I haven't ordered my burbur and pinella yet, and I really must! Is detox still important when you're not on the abx though? :-/ Will it still help to clear my poor fuzzy brain out?? :-(

Thanks so much for the hugs and support xx

Flossie,

Based on what you have said, it might help! I think it is worth checking out.

I would take advantage of a break and continue detoxing. It will probably help to alleviate some of your symptoms. Make sure your doctor knows that you're detoxing when you talk to him/her again so that he/she/you can take that into consideration when you decide your plans.

Hang in there Flossie! =)

Revive, lymie girl, sarahm - thanks so much for your replies and your support and encouragement. I really appreciate it. I just so want my brain back :-( . . . tbh, I'm not sure I am doing enough detoxing . . . I drink lemon water, and I take things like broccoli extract and drink green tea, I eat healthily, tons of greens etc, but nothing more specific than that. Tried a detox bath with Epsom salts one time but it nearly killed me - felt sick and faint and terrible - so I haven't risked it again, although I'm pretty sure I had the water way too hot :-/. I will try & order the burbur and pinella, but not sure what else I should do :-/. I just so want to be healthy again, but it's hard when you don't know what stage you're at or what you're doing really . . . if all the infection has gone, if you're just clearing up the mess now . . . Ugh, it's all just so confusing and frustrating :-(.

I will try my best with the detox, and sarahm, you're not at all annoying with all your talk of detox! ;-)

Thanks again for all your support and encouragement, it really helps and means a lot xx