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HELP! Cognition problems/constant pacing. (Bart Relapse)

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Posted 1/12/2023 4:18 AM (GMT 0)
Hi there,

I wonder if anyone can help me, because I'm feeling really depressed right now and have no idea what to do.

I did write on here fairly recently, and put alot of my story in that post....but I'll write it again just for those that didn't read it.

I basically got better from Lyme Disease/Co-infections a while ago and got back to feeling better than I ever have in my life. This was about a year and 4 months ago now.

I returned to work....and shortly after returning, I had an accident....

As soon as this happened, I started having symptoms return again - but this time even more intense than my original Lyme Disease. (Mainly neurological symptoms, along with some other stuff)

Once i initiated treatment again, my brain got pretty bad, and basically kinda shut down, to the point where I wasn't able to do anything other than cry most days wondering what was going on. (Couldn't really think, decide what I needed to do for the day, do tasks etc etc.) The part of my brain which I usually use just wasnt firing like normal for some reason.

So I basically just sat there with a blank brain crying all day....or just pacing back and fourth to the kitchen because I didn't know what else to do.

Fast forward into a few months, and my cognition started to slow down even more to the point where my emotions/thoughts/feelings were becoming less and less. (Almost like the bacteria were burrowing deeper or something - or possibly migrating into the brain)

Again, I was continuing to sit, or pace....just constantly crying and crying and crying, not knowing how to get my brain to switch back on again so I could start doing tasks like an adult again.

I tried carrying on with my original practitioners herbs that got me better the first time, but this time they did nothing! I did them for around 7-8 months, and literally had around 5% improvement if that.

I then told my practioner that his approach may of worked the first time, but with whatever is going on this time, it just isn't working and I need to try something else.

So about two-three months ago I started antibiotics.

I did Rovamycine, Rifampin.....and was meant to do Bactrim but didn't get around to that because honestly...I felt really crap taking the antibiotics and didn't feel like they were touching the sides. I also wanted to give myself abit of a break from them.

NOTHING I have tried so far has got my cogntion back properly and i'm in such a mental state right now not knowing what to do :-(

Has anyone had this cogntion symptom where the brain is just blank and there is no thoughts/emotions or feelings like there normally would be?????

If so, what actually helped you to get back it back online again so you could think again properly?

I don't understand what's going on and I'm really scared right now can someone please help.

It's like the bacteria are somewhere in my head hiding and nothing is hitting it. My cognition is just blank 80-90% of the time at the moment and I don't know what to do.

Any suggestions would be REALLY appreciated. Someone who's had a similar thing or the same thing to me and got their brain back would be amazing.

Much love,

Ryan
Posted 1/12/2023 5:57 AM (GMT 0)

Rsmithy said...
Hi there,

I wonder if anyone can help me, because I'm feeling really depressed right now and have no idea what to do.

I did write on here fairly recently, and put alot of my story in that post....but I'll write it again just for those that didn't read it.

I basically got better from Lyme Disease/Co-infections a while ago and got back to feeling better than I ever have in my life. This was about a year and 4 months ago now.

I returned to work....and shortly after returning, I had an accident....

As soon as this happened, I started having symptoms return again - but this time even more intense than my original Lyme Disease. (Mainly neurological symptoms, along with some other stuff)

Once i initiated treatment again, my brain got pretty bad, and basically kinda shut down, to the point where I wasn't able to do anything other than cry most days wondering what was going on. (Couldn't really think, decide what I needed to do for the day, do tasks etc etc.) The part of my brain which I usually use just wasnt firing like normal for some reason.

So I basically just sat there with a blank brain crying all day....or just pacing back and fourth to the kitchen because I didn't know what else to do.

Fast forward into a few months, and my cognition started to slow down even more to the point where my emotions/thoughts/feelings were becoming less and less. (Almost like the bacteria were burrowing deeper or something - or possibly migrating into the brain)

Again, I was continuing to sit, or pace....just constantly crying and crying and crying, not knowing how to get my brain to switch back on again so I could start doing tasks like an adult again.

I tried carrying on with my original practitioners herbs that got me better the first time, but this time they did nothing! I did them for around 7-8 months, and literally had around 5% improvement if that.

I then told my practioner that his approach may of worked the first time, but with whatever is going on this time, it just isn't working and I need to try something else.

So about two-three months ago I started antibiotics.

I did Rovamycine, Rifampin.....and was meant to do Bactrim but didn't get around to that because honestly...I felt really crap taking the antibiotics and didn't feel like they were touching the sides. I also wanted to give myself abit of a break from them.

NOTHING I have tried so far has got my cogntion back properly and i'm in such a mental state right now not knowing what to do :-(

Has anyone had this cogntion symptom where the brain is just blank and there is no thoughts/emotions or feelings like there normally would be?????

If so, what actually helped you to get back it back online again so you could think again properly?

I don't understand what's going on and I'm really scared right now can someone please help.

It's like the bacteria are somewhere in my head hiding and nothing is hitting it. My cognition is just blank 80-90% of the time at the moment and I don't know what to do.

Any suggestions would be REALLY appreciated. Someone who's had a similar thing or the same thing to me and got their brain back would be amazing.

Much love,

Ryan

Sorry you’re having such a rough time, Ryan. This disease really sucks!

I haven’t heard of rovamycine for Lyme and CO’s treatment.

Have you taken Rifabutin?
According to some llmds - it’s better than Rifampin.
Have you tried minocycline?
It is one of the best abx for penetrating the blood/brain barrier.
Posted 1/12/2023 6:28 AM (GMT 0)

Girlie said...

Rsmithy said...
Hi there,

I wonder if anyone can help me, because I'm feeling really depressed right now and have no idea what to do.

I did write on here fairly recently, and put alot of my story in that post....but I'll write it again just for those that didn't read it.

I basically got better from Lyme Disease/Co-infections a while ago and got back to feeling better than I ever have in my life. This was about a year and 4 months ago now.

I returned to work....and shortly after returning, I had an accident....

As soon as this happened, I started having symptoms return again - but this time even more intense than my original Lyme Disease. (Mainly neurological symptoms, along with some other stuff)

Once i initiated treatment again, my brain got pretty bad, and basically kinda shut down, to the point where I wasn't able to do anything other than cry most days wondering what was going on. (Couldn't really think, decide what I needed to do for the day, do tasks etc etc.) The part of my brain which I usually use just wasnt firing like normal for some reason.

So I basically just sat there with a blank brain crying all day....or just pacing back and fourth to the kitchen because I didn't know what else to do.

Fast forward into a few months, and my cognition started to slow down even more to the point where my emotions/thoughts/feelings were becoming less and less. (Almost like the bacteria were burrowing deeper or something - or possibly migrating into the brain)

Again, I was continuing to sit, or pace....just constantly crying and crying and crying, not knowing how to get my brain to switch back on again so I could start doing tasks like an adult again.

I tried carrying on with my original practitioners herbs that got me better the first time, but this time they did nothing! I did them for around 7-8 months, and literally had around 5% improvement if that.

I then told my practioner that his approach may of worked the first time, but with whatever is going on this time, it just isn't working and I need to try something else.

So about two-three months ago I started antibiotics.

I did Rovamycine, Rifampin.....and was meant to do Bactrim but didn't get around to that because honestly...I felt really crap taking the antibiotics and didn't feel like they were touching the sides. I also wanted to give myself abit of a break from them.

NOTHING I have tried so far has got my cogntion back properly and i'm in such a mental state right now not knowing what to do :-(

Has anyone had this cogntion symptom where the brain is just blank and there is no thoughts/emotions or feelings like there normally would be?????

If so, what actually helped you to get back it back online again so you could think again properly?

I don't understand what's going on and I'm really scared right now can someone please help.

It's like the bacteria are somewhere in my head hiding and nothing is hitting it. My cognition is just blank 80-90% of the time at the moment and I don't know what to do.

Any suggestions would be REALLY appreciated. Someone who's had a similar thing or the same thing to me and got their brain back would be amazing.

Much love,

Ryan

Sorry you’re having such a rough time, Ryan. This disease really sucks!

I haven’t heard of rovamycine for Lyme and CO’s treatment.

Have you taken Rifabutin?
According to some llmds - it’s better than Rifampin.
Have you tried minocycline?
It is one of the best abx for penetrating the blood/brain barrier.

Hi Girlie,

It's not your fault....it's just part of this evil disease. I honestly feel though that I just can't carry on anymore, Im struggling so bad emotionally right now. I don't know how to keep holding on.

Yeah I haven't heard of Rovamycine for Bart either...but the LLMD who's been treating me said it's very delicate and he usually treats children with it also, so he likes putting people on it.

I've never tried Rifabutin or Minocyline.

To be honest, I don't know if I've got the strength to hold on anymore....

Have you had this cognition symptom yourself?

Love Ryan x
Posted 1/12/2023 7:03 AM (GMT 0)
Since the forum's "Quote Post" feature is broken, it would be helpful to not quote entire messages. Actually, unless there's a specific need to quote a specific passage, it's better to simply use the "Quick Reply" feature at the bottom of the thread. (This is the blank text box to write a reply.) Otherwise, selecting "Quote Post" to a previous "Quote Post" becomes painful trying to decipher who said what.
Posted 1/12/2023 7:24 AM (GMT 0)
“ I've never tried Rifabutin or Minocyline.

To be honest, I don't know if I've got the strength to hold on anymore....

Have you had this cognition symptom yourself?”

////////////////////////////

Yes! My brain was not functioning well at all. Short term memory was in the garbage.
Something simple like balancing my check book was confusing. Paying bills - a few times I mailed them without signing them.

It does get better!

I was off work for about 6 years and when I went back - it was difficult.
I had to post for a less cerebral job and take a few dollars per hour cut in pay.

But - I have improved over time. I actually like my new job - the coworkers are very friendly and supportive.
I know now that I could do the other job - but I like where I’m at.

Don’t give up!
Posted 1/12/2023 8:05 AM (GMT 0)
Thanks girlie.

It's good to know youre working again, that's positive!

What do you find is the drug that best helped with your cognition and got it out of the worst?

Do you feel it's a case of just lowering the load, or do you feel there a specific part that needs to be targeted to get that part back?

That's what I'm really confused about.

Much love,

Ryan
Posted 1/12/2023 5:00 PM (GMT 0)

trkane said...
I feel your pain. The brain is something I just cannot get back. The only way I could get better functioning was when I was on the combo of rifabutin, minocycline, omnicef and timdamax. I would do this for one week and felt amazing. Then it would gradually decline until I couldn't stand it anymore. And I would take it again,

Because I am at the point of really needing to be done with abx we tried

reducing that combo like cutting the dosage of each in half- that didnt work.
cycling mino 2 weeks on 1 off - that didnt work.

Now I am 1 week zith, 1 week rifabutin. 4 off and that doesn't appear to be working. I am coming up on my next round of that so we will see.

I threw the theory that the combo was reducing inflammation rather than treating anything and the inflammation gradually returned as time went on. That was dismissed.

Trkane,

That's REALLY odd! Because you're having the same reaction as me.

When I took Rovamycine my cogntion was almost back. Probably to about 60%. I could play the Xbox and do a few things to distract myself while treating which made things ever so slightly easier.

THEN.....after a whole month of me thinking I was finally getting the stuff out, I stopped the antibiotics and my cogntion went straight back to where it was.

That's really odd that you are having the same thing.

I came to the same theory aswell...inflammation is being reduced by the antibiotics as a secondary action, and that's what's making the difference....not the actual killing mechanism.

It's terrifying.

I also noticed that when I drink huge amounts of water, or fill up with toxins and need to go to the toilet, that sometimes also brings it ever so slightly back. Very very slightly.

I've been talking to a girl, and she had the same thing, and even used most of the same antibiotics as me....and hers came back pretty fast.

I'm really confused as to what is actually going on.

Do you have an email?

Would be useful to keep eachother updated.

Much love,

Ryan
Posted 1/12/2023 5:30 PM (GMT 0)
Hi, Ryan,

I'm so sorry you're dealing with this! Do you identify as having depersonalization? That can be one of the most disorienting symptoms. I have spent long stretches feeling like I couldn't access my brain, if that makes sense. Neurological inflammation is brutal!

While you treat infections, I would try also calming the inflammation in your body and doing anything you can to regulate your nervous system directly. For many of us, antimicrobial treatment alone is not enough to resolve some symptoms. Have you tried taking curcumin, CBD, omega 3 fatty acids, or other remedies for soothing the nervous system?

I made the most progress with this symptom when I treated mast cell activation syndrome (MCAS) with a low-histamine diet, quercetin, curcumin, and DNRS limbic system retraining. I think the limbic system retraining specifically had the most impact on my cognition and mental clarity. The Curable chronic pain app (which does also work for other chronic ailments, they just use "pain" as a catch-all term) also was helpful. I also worked in an array of other methods for regulating my nervous system, including restorative yoga, meditation, mindfulness exercises, breathwork, vagus nerve exercises, craniosacral therapy, acupuncture, tapping, etc. If that sounds like a lot of work, that's because it is. But it made a huge difference.

I also have heard people say that bicillin injections helped them tremendously with brain fog and cognitive symptoms, but I have not tried that personally.

It is possible to heal, even from these maddening symptoms. And they are maddening! But they are not permanent.
Posted 1/12/2023 5:46 PM (GMT 0)
bartonella is known to rebound pretty quickly after antibiotics - if the bug has not been treated sufficiently

i do not believe you are having anti-inflammatory effects only from the abx -

instead everything is more consistent with just not treating for long enough / not getting the load down to a point where the immune system can take over and finish the job

the fact that you can even have spells of feeling near normal while on abx is a good indication the ABX are working - as many people who have had bart for a long time get no results for several months or even longer -

bart is just a hard infection to get to turn around
this is what the doctors that specialise in threating it - like Dr M say
Posted 1/13/2023 1:45 AM (GMT 0)

Rsmithy said...
Thanks girlie.

It's good to know youre working again, that's positive!

What do you find is the drug that best helped with your cognition and got it out of the worst?

Do you feel it's a case of just lowering the load, or do you feel there a specific part that needs to be targeted to get that part back?

That's what I'm really confused about.

Much love,

Ryan

I had the most improvements on DrJ’s Bartonella and Persisters protocol.
I think it was the Rifabutin and minocycline combination that did the most for me.
But it was brutal at times
Posted 1/15/2023 2:22 PM (GMT 0)

Garzie said...
bartonella is known to rebound pretty quickly after antibiotics - if the bug has not been treated sufficiently

i do not believe you are having anti-inflammatory effects only from the abx -

instead everything is more consistent with just not treating for long enough / not getting the load down to a point where the immune system can take over and finish the job

the fact that you can even have spells of feeling near normal while on abx is a good indication the ABX are working - as many people who have had bart for a long time get no results for several months or even longer -

bart is just a hard infection to get to turn around
this is what the doctors that specialise in threating it - like Dr M say



The remaining symptoms that are not resolved with diet are cognitive, fatigue, and insomnia. Besides that I dont have any symptoms of another infection.

Maybe it is a leaky gut thing and my gut is permanently leaky? However I doubt if LLMD (Dr. J in DC treating for 10+years) would agree to the gut thing

Over a year ago his theory was mycoplasma. I dont think that panned out. I have no idea what he is thinking now.

Post Edited (trkane) : 11/16/2023 6:05:05 AM (GMT-8)

Posted 1/15/2023 6:21 PM (GMT 0)

trkane said...


I dont have any symptoms of another infection. Unless there is a brain infection that only causes cognitive issues. Everything else I have going on is explained by diet. If I keep my diet totally clean all my symptoms but cognitive clear up. Maybe it is a leaky gut thing and my gut is permanently leaky? However I doubt if LLMD (Dr. J in DC treating for 10+years) would agree to the gut thing
.

this sounds a lot like my partner and i

symptoms were always linked to and exacerbated by food
keto diet made the biggest single difference - even compared to antibiotics

yet both my partner(Ex) and i have bartonella

what i think i going on is that bartonella is known to infect the cells that line the gut and cause inflammation there
there are papers describing colitis, gastritis etc etc from bartonella
i have confirmed gastritis on gastroscopy
this inflammation and damage to this delicate lining leads to leaky gut
which leads to immune dysregulation
and lots of things floating around in the blood supply hat should not be there
bacterial fragments, food particles, microbial by products etc
this in turn drives systemic symptoms - including all the most sensitive organs - eg brain

the bartonella is still the main issue i believe
but the symptoms can be reduced by reducing the bacterial overgrowth in the gut ( keto diet)
limiting foods which irritate the system - gluten etc + whatever your system does not like- can be highly individual.
i think this takes a load off the individuals immune system and allows them to progress better with treatment
my partner got most of her health back by only doing strict keto for 18months then 2 short courses of antibiotics (less than 2 weeks each for an ear infection) + some basic buhner herbs along the way
i really believe the Keto was the biggest thing for her

has helped me too - just not quite this much!
Posted 1/16/2023 6:39 PM (GMT 0)
“Ryan,
I don't think this forum has private messaging so I have no way of giving you my email. If you want to post yours in your signature or on this thread I will send you mine. If not I totally understand!”

Enable your email address in your profile and it can be accessed there. He can just click on your forum name to see it.
Posted 1/31/2023 9:04 PM (GMT 0)

Girlie said...
Enable your email address in your profile and it can be accessed there. He can just click on your forum name to see it.


Wouldn't my email still be essentially public? Maybe I am not understanding
Posted 1/31/2023 9:22 PM (GMT 0)

Garzie said...
but the symptoms can be reduced by reducing the bacterial overgrowth in the gut ( keto diet)

Maybe nothing tick related is wrong with me. It is just bacterial overgrowth caused by years of abx. And for some reason it takes a dose of multiple abx to reduce the overgrowth enough to improve my cognitive. Not 2 consecutive weeks of only 1 abx every 5 weeks.

I am essentially keto. low oxalate keto. gluten etc free. I cant remember if it helped. If I go off the diet enough I do get worse. To be honest I am sick of trying and am currently rebelling! Non special diet food tastes so good.

I just finished rifabutin. I am going to try a course of mino to see if I can get my sleep back. I was sleeping relatively well before my last appt when he took me off of mino. Right now I am working on my 3rd month of max 4.5 hours sleep a night.

After that I am going to try the weeks worth of abx that helped me in the psat. Mino, rifabutin, something else and tindamax. See if I get the bump I used to get.
Posted 1/31/2023 11:39 PM (GMT 0)
“Wouldn't my email still be essentially public? Maybe I am not understanding”

It would be available to forum members only.

I have an email address specifically for the forum separate from my “main” email. It doesn’t have my “real name” in the address.
Posted 2/1/2023 6:39 PM (GMT 0)
yep - you can create a free email address with providers like google's gmail etc that you only use for forums stuff

that is what i do
Posted 2/3/2023 10:39 AM (GMT 0)
In short - YES. My cognitive problems totally blew up over a few months. The "blank" brain is one of the most frightening things anyone could ever experience. I couldn't remember anything I read, couldn't read sentences on the tv, forgot very simple things, totally sympathize with older people who get confused easily, couldn't "see" math in my head like I used to... etc.
I have improved significantly, but I still do have times where I relapse. It turns out that at least in my case, babesia and bartonella are the worst offenders. Mine blew up a month after covid, and our hypothesis is that covid disrupted my immune system and/or damaged the brain barrier and allowed some of the nasties to proliferate.

Getting your brain back may take some very, very heavy hitters.

There are several things that I did which helped:
Babesia:
(1) Coartem + Malarone/Mepron
(2) Enula drops
Bartonella:
(1) Rifabutin + Clarithromycin AND/OR Minocycline
(2) Fluconazole
Peptides:
(1) Thymosin Alpha 1
(2) BPC 157

I ordered some pyrazamide from india - so I'm hoping that I can incorporate that into my bartonella protocol for persisters. Also, if my babesia doesn't fully get kicked, I will incorporate tafenoquine.
Posted 2/8/2023 4:43 PM (GMT 0)

Rsmithy said...
Hi there,

I wonder if anyone can help me, because I'm feeling really depressed right now and have no idea what to do.

I did write on here fairly recently, and put alot of my story in that post....but I'll write it again just for those that didn't read it.

I basically got better from Lyme Disease/Co-infections a while ago and got back to feeling better than I ever have in my life. This was about a year and 4 months ago now.

I returned to work....and shortly after returning, I had an accident....

As soon as this happened, I started having symptoms return again - but this time even more intense than my original Lyme Disease. (Mainly neurological symptoms, along with some other stuff)

Once i initiated treatment again, my brain got pretty bad, and basically kinda shut down, to the point where I wasn't able to do anything other than cry most days wondering what was going on. (Couldn't really think, decide what I needed to do for the day, do tasks etc etc.) The part of my brain which I usually use just wasnt firing like normal for some reason.

So I basically just sat there with a blank brain crying all day....or just pacing back and fourth to the kitchen because I didn't know what else to do.

Fast forward into a few months, and my cognition started to slow down even more to the point where my emotions/thoughts/feelings were becoming less and less. (Almost like the bacteria were burrowing deeper or something - or possibly migrating into the brain)

Again, I was continuing to sit, or pace....just constantly crying and crying and crying, not knowing how to get my brain to switch back on again so I could start doing tasks like an adult again.

I tried carrying on with my original practitioners herbs that got me better the first time, but this time they did nothing! I did them for around 7-8 months, and literally had around 5% improvement if that.

I then told my practioner that his approach may of worked the first time, but with whatever is going on this time, it just isn't working and I need to try something else.

So about two-three months ago I started antibiotics.

I did Rovamycine, Rifampin.....and was meant to do Bactrim but didn't get around to that because honestly...I felt really crap taking the antibiotics and didn't feel like they were touching the sides. I also wanted to give myself abit of a break from them.

NOTHING I have tried so far has got my cogntion back properly and i'm in such a mental state right now not knowing what to do :-(

Has anyone had this cogntion symptom where the brain is just blank and there is no thoughts/emotions or feelings like there normally would be?????

If so, what actually helped you to get back it back online again so you could think again properly?

I don't understand what's going on and I'm really scared right now can someone please help.

It's like the bacteria are somewhere in my head hiding and nothing is hitting it. My cognition is just blank 80-90% of the time at the moment and I don't know what to do.

Any suggestions would be REALLY appreciated. Someone who's had a similar thing or the same thing to me and got their brain back would be amazing.

Much love,

Ryan

Maybe the infections calmed down a lot but were hiding a little bit, and then when the accident happens or trauma it flares up again. That always happens
Posted 2/9/2023 4:56 PM (GMT 0)

trkane said...

Garzie said...
bartonella is known to rebound pretty quickly after antibiotics - if the bug has not been treated sufficiently

i do not believe you are having anti-inflammatory effects only from the abx -

instead everything is more consistent with just not treating for long enough / not getting the load down to a point where the immune system can take over and finish the job

the fact that you can even have spells of feeling near normal while on abx is a good indication the ABX are working - as many people who have had bart for a long time get no results for several months or even longer -

bart is just a hard infection to get to turn around
this is what the doctors that specialise in threating it - like Dr M say



The remaining symptoms that are not resolved with diet are cognitive, fatigue, and insomnia. Besides that I dont have any symptoms of another infection.

Maybe it is a leaky gut thing and my gut is permanently leaky? However I doubt if LLMD (Dr. J in DC treating for 10+years) would agree to the gut thing

Over a year ago his theory was mycoplasma. I dont think that panned out. I have no idea what he is thinking now. Sometimes i feel like I am some random protocol with random abx the way we change stuff up just to see what sticks.

If you feel great on the omnicef, mino, rifabutin protocol but quickly relapse within a couple of weeks, why not continue to treat and not take breaks? I believe previously you mentioned your body can't handle treatment as much as it used to...is this why? What specifically happens to you if you continue to treat with not as long of breaks?
Posted 2/9/2023 5:21 PM (GMT 0)
quote - "The remaining symptoms that are not resolved with diet are cognitive, fatigue, and insomnia. Besides that I dont have any symptoms of another infection."

yep, these are my main symptoms too - but i defo still have bartonella as its visible in my blood
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