Does anyone ever recover from neuro Lyme

Hi I know a lot of people on this forum are currently dealing with Lyme and going through treatment so this might not get answered by many but I am just curious if anyone actually gets better from neurological Lyme disease or if symptoms just get a little better and you just learn to live with it. I've been on treatment for almost four months and a lot of symptoms have gotten better besides my neurological problems. I have seen little (if any) improvement in these neuro symptoms but they are by far my worst ones. It seems like a lot of people struggle with the brain fog and dizziness and I have yet to find someone reporting that it has gone away completely. I never had vision problems before starting treatment and now I can barely even function without wearing sunglasses all day. Things look really weird and my eyes don't seem to focus correctly without the glasses. I don't know if this is a herx since it started after beginning treatment or if it is a side effect from one of the medications I am taking. I am starting to think it will never go away. Has anyone else experienced this specific symptom and had success with getting rid of it? Or the brain fog/dizziness? Seems like neuro Lyme is a life sentence and people just deal with it after years of trying to get rid of it. If that's the case I'm not sure what the point of treatment is. I am really about to stop treatment because like I said I never had vision problems before and now I consider myself to be in a worse state than I was before I saw my LLMD. So my ultimate question is does anyone ever get rid of neuro Lyme and vision problems or does "remission" just apply to joint pain and walking problems? Does anyone have vision problems where your eyes don't focus properly and things just stick out and look weird? Is treatment completely pointless for neuro Lyme?
Thanks

It would be helpful for you to read through the "New to Lyme?..Start Here!" thread at the top of the page. It's got a lot of great information - symptom lists, info on probiotics, detoxing suggestions, and more.

I also wanted to add that sometimes the neuro symptoms can be from bartonella...so if we're just treating lyme...at some point we need to switch to target bart.

went to a Neuro Dr today....told me people do recover,takes time.

keep in mind,this is not my llmd.

stepped up the green smoothies today....decent day...now i have to figure out what part of the treatment made it "decent")

Lyme mycoplasma,candida. probably had lyme for years

had to add...vision still does the same thing you mentioned.....he said this should SLOWLY get a little better

So you had the bartonella 'scratch' marks - or stretch marks?

Ceftin and Doxy are usually for lyme, but not specifically to target Bart.
It depends on what medication is in the PICC line - if it's Rocephin - that is for lyme.

It could be that your Dr. wants to treat lyme first...and then bart after.

I would think if lyme and bart were left untreated for many years...it is possible there could be some vision problems..
But...many people who've had the infections for a long time...do not suffer from permanent damage.

Try not to think of the worst case scenario (I know - it's difficult) - and just focus on treatment - which includes detoxing....

I suffer from mainly neuro symtpoms.Everything looks weird to me<kind of unreal,And just not right.Sometimes my mother,Fiancee and God mother even my dog look unfamilliar to me.My house seems unfamiliar.Even though i know were im at,I know who im talking to.Everything just seems really weird and off.I refer to it as being heavily drugged lol.But I have not yet been diagnosed nor treating I will begin first treatment in about a week and a half 2 weeks when they get here via mail lol.But just thought i would chime in.The only thing im doing as of now is detox wich i dont think could hurt if anything open pathways even better so when i do treat maybe i wont herx or maybe wont herx as bad lol.

I had a lot of neuro symptoms (night seizures, couldn't spell or read out loud, vertigo laying down, walked around the block and didn't recognize my own street, numb shins, fizzy brain, internal vibrating, vision switching from perfect to awful daily). I started treatment in October. Most if it all cleared up after 6 weeks of Doxy plus some homeopath stuff. I am currently on Minocycline pulse. So far so good. Just dealing with internal tremors and herxing on some antifungals. Main thing is detox detox detox. Just make it a priority and you will start to get better. Plus clean up your diet, etc. good luck!!

mino is the only abx that made a difference for my neuro symptoms. after it was over i felt it got my brain back, i remember, after the first herx, which was terrible, i went outside in my yard and reality seemed incredibly real, as if a spell was broken. But it's supposed to work in high doses, like 300mg a day , and for me that was a big problem because i was not able to keep that dose that high for more than 4-5 days.

i might have to take another round because i feel the neuro symptoms are coming back, and if i do, i also would like to pulse it like Girlie says, having read all that stuff about spirochetes and the latest research from K Lewis, makes no sense to administer any antibiotic for months without pulsing. The spirochetes will just turn into round bodies and wait until you're done with the abx and then re-start the infection. Pulsing is a much better idea, but i dont think we know right now what is the ideal pace for it, how many days should u stop to let the critters think they are safe. Any ideas there ?

I do one Mino every other day. I know of two other patients with this same Doctor who are also having luck on this protocol, although at some point, he said he needs to add Tindamax. I'm just so sensitive and herx so easily, I can't do high doses. I take it at night before bed so I don't haven't to deal with the herx.

What is the antibiotic used specifically for bartonella? For detoxing I am doing: dry skin brushing, activated charcoal, milk thistle, lemon water, glutathione, and I also exercise everyday for 30 minutes and sometimes apple cider vinegar. I don't know what else I can really do for detox besides adding more herbs? I feel like I've hit a wall with treatment because it seems like I'm doing everything I should but maybe my antibiotics are wrong. I am seeing my LLMD next week. The only thing that hasn't really improved at all is my vision like I said so idk what to do about it. Is there something I'm missing? Or is it just a matter of time?
Supplements
zinc
folic acid
b12 shots
olive leaf extract
grapefruit seed extract
selenium
vitamin c
vitamin d3
Omega 3
activated charcoal
valtrax
Co q 10
curcumin
elderberry drops
milk thistle drops
nystatin drink
molybdenum drops
probiotic
glutathione breathing treatments
Thanks

I am using Rifampin for bartonella - at first in combo with minocycline...and now in combo with biaxin.
I would say I see Rifampin used the most for targeting Bartonella.

I have read the the fluoroquinolone class of abx might be the best for Bart...BUT they come with a black box warning - for risk of tendon rupture. That was enough for me to try something else.

Some people have used Bactrim with Azithromycin.


I know Dr. M.R. in Seattle has a protocol on his website that pairs a tetracycline (doxy/mino) with a macrolide (zithro/biaxin) to treat bart. But, many of us are on a combo like that to treat lyme..and still seem to be stuck with bart symptoms and have to go on a different protocol.

Samcats - are you talking about the neuro symptoms? They could be from neurolyme...in which case treating lyme should help.

I have lyme and bart...and when went on Minocycline - I was on it for a month and a half before adding in Rifampin for bart...
I do believe the mino is what helped my neuro symptoms...as I started to feel better about a month and a half after beginning mino...and I had just started the Rifampin for bart...

i would just have a discussion with your Dr. Have you only been treating lyme for a few weeks with the doxy and Ceftin? If so, it's really not enough time to judge if a protocol will work.

Sometimes doxy is given first because it will get some of the other co-infections - like Ehrlichiosis, and anaplasmosis.

Maybe after that protocol, your Dr. would be willing to give Minocycline a try...but give your current protocol a chance.

I will add that from the beginning the only main symptoms I had all along were neuro-dizziness, brain fog, tingling and electrical shocks in my calf, numb hands. I had a few other random symptoms as well before starting treatment like neck pain and wrist pain and that has since went away but my neuro things have not improved. I would say it's worse because now I have the vision problems. Is this normal? I really feel like I'm losing my mind and my parents are not too happy about paying for this when I am not improving

Can I ask what state you live in? I live in Ohio and there's only one LLMD in Ohio so I might have to change IDK