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Neuroborreliosis - worse when brain is over stimulated?!

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Posted 11/17/2016 3:54 PM (GMT 0)
Hi all,
I'm in need of feedback. Has anyone with Neuroborreliosis + Co-Infections experienced symptoms becoming worse mainly while in public places or when brain is over-stimulated?? My Co-Infections are Babesia, Rocky, and Typhus. I have realized that my brain is fairly calm when my environment is calm. For instance, right now, my kids are at school, husband is at work. My house is quiet and my brain is quiet. I can think fairly coherent thoughts and am not struggling to make sense of my surroundings or to process my thoughts. I can read, type, and only experience mild neuro symptoms (some memory loss, myoclonic jerking at a minimal, fatigue, etc).

BUT, when my kids come home and start chatting away...or when I'm at one of my child's sporting events surrounded by a ton of people who are talking and cheering...or when I'm at church and we're singing songs and listening to instruments...even a conversation with a person that lasts more than 45 minutes....my brain LITERALLY shuts. off. It's like a veil drops. I begin feeling a buzzing in my head and within 2-3 minutes, my fingers become frozen, my tongue no longer works, I can't form words or process what's being said to me. There's been a few times where my legs have even locked up and I couldn't take steps...it's like I'm FREEZING (not cold...just becoming frozen - although cold temperatures do seem to freeze me up much faster than warm temps). With these episodes, Myoclonic jerking increases significantly and I wind up looking like I have epilepsy. These "episodes" last up to 30 minutes or longer and it literally ruins my day. Once an episode like this happens, I'm taken over with anxiety and feelings of depression...it's like these episodes are actually shifting my mood. And the mood changes isn't because I'm feeling sad over my loss of ability to socialize normally...no....it's literally like I've taken a drug or something and my brain is on speed - it's running so fast - told my husband I feel like I have post traumatic stress disorder or something!!!

Is this an effect of Neuro Lyme Disease or common for a specific Co-Infection?? Has anyone else in this forum ever experienced something like this?!?! I'm feeling scared...beginning to wonder if this is going to be my life. Have been treating with Malarone, Azithromycin and Minocycline for over 2 months now and while many symptoms have improved (joint pain, headaches, vision), I literally feel like my central nervous system and brain are very screwed up. Can't imagine living like this forever!!!! Hoping someone can provide me with feedback that this is normal and that it gets better!!!!
Posted 11/17/2016 4:05 PM (GMT 0)
I get that - it's horrible. People around me are finally getting used to me saying that my brain is tired and I need to go, because to explain the whole thing would take too long and by that point in time, I simply can't function well enough to explain it any further. Fortunately, those that are around me most have understood this for many years now.

I adore my grandkids, but I can't spend more than a couple of hours with them, even now. Their constant chatter, and rough housing simply overwhelms me. I hate that, but I can't do much about it other than take the time to heal.

Yes, this is an effect of Neuro Lyme mainly. Bartonella can complicate this, but I believe it's mainly Neuro Lyme.

How's your detoxing? This will help some. Successful treatment is the only thing that took it away for me, but I've been reinfected, so I'm back to this again.

2 months of treatment, even successful treatments, isn't enough. This takes a while to deal with, unfortunately. The best thing you can do is to find as much "quiet time" as you can during each day - even if you have to go to your own room for 30 minutes just to help find balance again. When my kids bring their kids up for the holidays or any other event, I have to keep excusing myself to the bedroom - or outside at night - just for a few minutes of quiet.
Posted 11/17/2016 4:23 PM (GMT 0)
Traveler, thank you for your feedback. While I hate hearing you're experiencing this as well, I'm comforted in knowing my brain isn't entirely unique in how it's handling the infections. Have your doctors communicated that this will be your new "norm"? In other words, do you believe moving forward you will forever have to "protect" your mind from over-stimulation in order to avoid these neurological "episodes"? Or in remission, have you had periods of time where you found you could tolerate lengthy and noisy social settings?

I too have found that if I step away and "turn my brain off" for brief periods, it helps with being able to re-insert myself into a social setting...but one can't do that while shopping or while at a sporting event. Which is leading me to isolation in an effort to avoid putting myself in situations that create these breakdowns.

This is so bad that I haven't driven since last Thursday night. The episodes were becoming so bad that I was unable to drive myself home afterwards, which led my husband and I deciding that for now, I needed to just give my brain a break and just stay home. One week of no driving with THREE children who play 5 sports and attend 2 different schools has been a challenge to say the least. And I don't even mean to sound like I'm complaining or whining...it's not that...it's just, I'm trying to fathom how a mom of 3 functions with these symptoms. The neuro side of this isn't something one can just "push through"...it's debilitating. :-/
Posted 11/17/2016 4:51 PM (GMT 0)
No, not at all. Most of the doctors I've seen had no clue what to say to me. I healed the first time with a practitioner that had never knowingly treated these infections before, and she was an alternative medicine practitioner, so she couldn't order those kinds of tests.

It was when I healed the first time that I realized that all those brain deficits and neurological issues healed as well - I didn't have to seek refuge from noisy or social events. But, I was reinfected and am back to dealing with this. I know it will go away once I heal again though.

My 'overloads' would happen in grocery stores too, so I came up with a plan! LOL! I wore a big floppy hat INSIDE the store (to protect my eyes from the fluorescent lights - they flicker), and dark sunglasses, and used a MP3 player, with soothing music when I had to go to stores.

Maybe your kids could learn a 'code word', for when they just need to settle down because your symptoms are overwhelming and you can only drive them to their activities if they cooperate? You can have a code word/phrase like 'my head is not working right' or whatever you choose. This will just let them know that the only way you can do what you need to do is if they cooperate.

Oh, and I never drive at night any more - the passing headlights really mess with my vision now. So, if that's the case with you as well, maybe with a little organization, you can drop them off for activities and a friend can bring them home if it's after dark??

Just some thoughts on how I would/did cope with those issues.
Posted 11/17/2016 5:16 PM (GMT 0)
Those are good tips! My husband and I are going to talk this weekend about a strategy to get our family through the next few rounds of treatment. I'll mention these ideas to him - thank you for sharing! And I'm so glad to hear that you're confident that "this too shall pass" regarding the neuro issues, assuming the infections go in to remission. That provides me with hope, for sure.
Posted 11/17/2016 5:17 PM (GMT 0)
Please do let us know if we can be of more help and update us on your journey!!
Posted 11/18/2016 12:40 AM (GMT 0)
You described exactly what I have.

Just to set your expectations, it takes a looong time to treat this illness. My LLMD said that I should expect to treat it for at least two years before I start to see results.

Two interesting things I've been reading about are hyperthermia treatment in Germany and this:
https://durayresearch.wordpress.com/

Note the Cautionary note. Not to be taken lightly.

For me, it's work that does it. Mental stimulation from thinking all day gives me this at the end of the day. I try to avoid any intensity. Intense discussions. Yelling matches. The news.

Also, make sure you get LOTS of sleep. I think the brain clears out the neurotoxins as we sleep. You'll probably get pretty intense dream cycles, I'd imagine.

How long have you been in lymie world?
Posted 11/18/2016 1:15 AM (GMT 0)
Yeah, it's terrible. I get this weird, tingling sensation in my brain, after I've done a lot of thinking, concentrating, etc. Basically, anything that's been mentioned so far.

People reacting to things as a group. For example, you mentioned people cheering at a sports game. There will be times where people will respond to things certain ways, and.. while I'm not completely lost to what it is and why they're responding, it's not the same for me. I feel foreign. A great example is, like, the times I've made people laugh in some of my classes. I'll say something that's not really all that funny to me, a many number of people will laugh, and look at me.. and I am just like.. uhhh.. haha.

As much as I try, I can't do very long, detailed conversations. I really try, but I always get the feeling I'm trying to get out of it ASAP, which is something that, I swear, I've read that is a symptom - avoidance of social situations or whatever.

Yelling matches will do it, too. I deteriorate badly, if you really upset me. My breaking point is very near. I will lose it. Then, when that happens, things like restraint, common sense, and the like are difficult to muster.

It's all very strange. I try not to let myself feel too out of place, but it's a chore.

In public, I'm able to maintain a pretty level state, but that's because I'm not really challenged in ways that are too social. I don't go around, engaging in intelligent conversations, anything like that. The most trouble I'm given nowadays is schoolwork.

Things will eventually get to where I'll be confronted by more people, things, situations, or whatever, because I continue to slowly push myself out of every new comfort zone that I develop, and I'm terrified that I will fall apart. Though, you know, just gonna keep trying. :D

Anyway, those sensations I mentioned are common for me, no matter what I am doing, but it's definitely much worse with mental stimulation. Throbbing.

But, say, after lying down, letting my mind be free, I've found I feel much better. If I'm at school or work, I just kind of stop thinking, if at all possible. Though, that's not always an option, so I force myself through it. Little brain naps do help, though.

This is a fascinating topic. I wish I could deliver some cohesive thoughts on it.
Posted 11/18/2016 1:36 AM (GMT 0)
Yep, I know exactly what you're talking about.

Have you ever tried prednisone? I take one pill of that, and I remember what it felt like to be a normal healthy human being. Ah, I miss those days.

Did you check out that article by Tom Grier?
Posted 11/18/2016 1:55 AM (GMT 0)
I have to deal with those very things, too. I am today. Stress of the emotional kind usually does it, but over-doing it in something I'm needing all my attention, like fixing a meal for company, also can shut me down.

I can make bad mistakes and get confused about where/what I'm doing while driving, even by myself if there has been any kind of upsetting incident while I'm out.

Stress snowballs easily on me, so I've made dedicated efforts to avoid situations that bring it on, but if I had children like so many here, I am not sure I could do near as well as you all do.


Well, I'm 65 now too, so that makes a difference as well.


But I tell you, for so many people here battling these conditions, everyone does a great job helping each other get through it all on this forum. And with some brilliant knowledge and insight as well.
Posted 11/18/2016 6:04 AM (GMT 0)
in my case probiotic capsule is my biggest enemy from last 6 month.probiotics made me worse &sucidal.every morning after taking antibiotics feel good but then i takeing pre&probiotic capsule empty stomach.in my case probiotic cause me neurotoxocity that i found during fast.during 4 day fast i feel better and minimum sympotams.but on 3 rd day of fast i tqke 1 pill of probiotic i think it make immune strong.but after that all cfs sympotams return.in my case last 6 month horrobile for me due to pribiotic because it mimic all lyme sympotams like ataxia(increase dizziness),whole body internal vibration feeling,scrotum pain,jerking of limbs.i have neuro lyme.so please check about your probiotic.i think this is biggest cause of chronic fatigue symdrome.if you better without probiotics than replay progress.take probiotic capsule after 100 times thinking becuse our gut can not process prociotic strain.
Posted 11/18/2016 2:14 PM (GMT 0)

gfields said...
Yep, I know exactly what you're talking about.

Have you ever tried prednisone? I take one pill of that, and I remember what it felt like to be a normal healthy human being. Ah, I miss those days.

Did you check out that article by Tom Grier?

You do know that using prednisone will hinder the immune function even further, right? That's why steroid use is not something someone with ongoing infections should use.
Posted 11/18/2016 2:17 PM (GMT 0)

abhi said...
in my case probiotic capsule is my biggest enemy from last 6 month.probiotics made me worse &sucidal.every morning after taking antibiotics feel good but then i takeing pre&probiotic capsule empty stomach.in my case probiotic cause me neurotoxocity that i found during fast.during 4 day fast i feel better and minimum sympotams.but on 3 rd day of fast i tqke 1 pill of probiotic i think it make immune strong.but after that all cfs sympotams return.in my case last 6 month horrobile for me due to pribiotic because it mimic all lyme sympotams like ataxia(increase dizziness),whole body internal vibration feeling,scrotum pain,jerking of limbs.i have neuro lyme.so please check about your probiotic.i think this is biggest cause of chronic fatigue symdrome.if you better without probiotics than replay progress.take probiotic capsule after 100 times thinking becuse our gut can not process prociotic strain.

This would likely indicate a very large issue with yeast/fungal infections. The abx are 'feeding' the problem (by stripping away more good bacteria), and the probiotics are causing die off reactions because they are replenishing the good bacteria in your gut - thus killing off the over production of bad bacteria.
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