HealingWell
Search Close Search
☰

Brain inflammation or active infection?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/2/2020 6:16 PM (GMT 0)
I have started working after 6+ years of being off due to lyme and CO’s

I tried going back to the position I had prior to lyme but it was too difficult - so have secured another position in the same organization. It’s not that I can’t learn it - it’s my memory that won’t retain all of it.

But I’m struggling - even with notes to remind me.

Is it possible this is brain inflammation that will still heal.

I’m supposed to be back on 4 days of abx - which I do monthly - but I’m debating not taking them.

I don’t know if the brain stuff is active lyme or if it’s possibly the mino causing intracranial hypertension - or inflammation that needs time to heal?

Ideas?
Posted 8/2/2020 7:11 PM (GMT 0)
One idea to rule out active infections could be a series of "challenges" with easily obtainable herbals that are known to hit certain infections... i.e., Cryptolepis for Babesia, Houttuynia for Bartonella, etc... if you take them for a week or so with no herxing/improvement it could be sign that particular infection is no longer driving your symptoms.

Another thought on overall inflammation/brain involvement is diet. (I apologize as I know I probably tend to disproportionately push diet as a solution, but it's been so key to helping me). I saw on another thread you said you still eat bread. Since you've treated with long-term antibiotics, that might have caused gut disruptions that make it harder to deal with gluten. I had terrible brain fog/word recall/memory issues (pre-Lyme) partially due to leaky gut and gluten intolerance. When I experimented with cutting gluten out of my diet the fog and other brain issues improved significantly within 48-72 hours. It was like the sun coming out from behind the clouds. Based on my experience at least, I imagine if you try gluten elimination you might know within a week or so if it's helping.

That's all I can think of right now, wishing you luck. Glad that they were able to find another position for you.
Posted 8/2/2020 7:32 PM (GMT 0)
What does Dr. J think? I know you trust him and he knows you well. I'm sure the uncertainty is frustrating. sad
Posted 8/2/2020 10:36 PM (GMT 0)
Try some prednisone. Ask for a methyl pack. If it helps with the brain fog and memory issues, then you know.

Dr Youngers The Autoimmune Brain is a pretty good introduction to the brain inflammation stuff, like $30 on Amazon worth a read.

Have you tried bicillin (as a monotherapy)? Dr k likes it for this type of situation
Posted 8/2/2020 10:40 PM (GMT 0)

dcd2103 said...
Try some prednisone. Ask for a methyl pack. If it helps with the brain fog and memory issues, then you know.

Dr Youngers The Autoimmune Brain is a pretty good introduction to the brain inflammation stuff, like $30 on Amazon worth a read.

Have you tried bicillin (as a monotherapy)?

So if prednisone worked - what would that mean?

I don’t think my Dr would prescribe it.
No, I haven’t tried bicillin.
Do you mean the shots?
Posted 8/2/2020 10:59 PM (GMT 0)

1yrinVA said...
One idea to rule out active infections could be a series of "challenges" with easily obtainable herbals that are known to hit certain infections... i.e., Cryptolepis for Babesia, Houttuynia for Bartonella, etc... if you take them for a week or so with no herxing/improvement it could be sign that particular infection is no longer driving your symptoms.

Another thought on overall inflammation/brain involvement is diet. (I apologize as I know I probably tend to disproportionately push diet as a solution, but it's been so key to helping me). I saw on another thread you said you still eat bread. Since you've treated with long-term antibiotics, that might have caused gut disruptions that make it harder to deal with gluten. I had terrible brain fog/word recall/memory issues (pre-Lyme) partially due to leaky gut and gluten intolerance. When I experimented with cutting gluten out of my diet the fog and other brain issues improved significantly within 48-72 hours. It was like the sun coming out from behind the clouds. Based on my experience at least, I imagine if you try gluten elimination you might know within a week or so if it's helping.

That's all I can think of right now, wishing you luck. Glad that they were able to find another position for you.

I don’t think it’s gluten related.
I did go gf early on after diagnosis for awhile and noticed no difference in any symptoms.
most of my meals are gf -
We have gf pasta. Also lots of salads and meat for dinners.

I also don’t have any gut issues.
And I was tested for gluten antibodies a few times - first time was after our son was diagnosed with celiac... and then a couple of times since - all were negative.

Re: another position - they had no choice - it’s union and I had the seniority.
Posted 8/2/2020 11:08 PM (GMT 0)

saraeli said...
What does Dr. J think? I know you trust him and he knows you well. I'm sure the uncertainty is frustrating. sad

I think the term he used was “inflammation” - I’ll check my notes later. He recommended Taurine and L-O-L-A

I just don’t know if I should take the abx - maybe it’s just adding to the inflammation.
Maybe after I learn the job and it becomes “rote” - I can take the abx again.

BUT - if not taking the abx makes it worse because bart will just flourish then I don’t want that to happen......

IDK what’s the best to do.

I know one thing - the more stressed/overwhelmed I get - the worse it gets.
And the pressure of trying to remember all the procedures and lack of confidence - adds to the stress and I start “gapping out”
Posted 8/2/2020 11:08 PM (GMT 0)
If prednisone worked then it would mean it’s inflammation related.

The theory behind Bicillin is that it’s a very very small amount of residual spirochetes in the brain that cause this inflammation. Low dose Bicillin acts stealth, it doesn’t push them into hibernation. If you combine it with other abx it will lose its effectiveness. It’s not just Dr K, I’ve seen a few other drs start to take this approach.

If the theory is right then a normal course of abx will do nothing to kill those last few spirochetes, which are leveraging your immune system to have outsized effects. This may be why Dr J has you pulsing your abx 4 days/month, it may be more effective against this type of infection than full dose
Posted 8/2/2020 11:44 PM (GMT 0)

dcd2103 said...
If prednisone worked then it would mean it’s inflammation related.

The theory behind Bicillin is that it’s a very very small amount of residual spirochetes in the brain that cause this inflammation. Low dose Bicillin acts stealth, it doesn’t push them into hibernation. If you combine it with other abx it will lose its effectiveness. It’s not just Dr K, I’ve seen a few other drs start to take this approach.

If the theory is right then a normal course of abx will do nothing to kill those last few spirochetes, which are leveraging your immune system to have outsized effects. This may be why Dr J has you pulsing your abx 4 days/month, it may be more effective against this type of infection than full dose

Having followed your posts for a while, Girlie, I’m with DCD and think you need to trial weekly Bicillin for a month or two - the symptomology just screams brain inflammation.

Bicillin is gaining a lot of traction as we learn more about what chronic Lyme truly entails. As long as you aren’t allergic to penicillin and don’t take any other Abx with it you’ll know within 1-2 months max if it’s the answer.
Posted 8/3/2020 12:09 AM (GMT 0)
Do you take b vitamins? Check b12 levels lately? Just a thought as I know it can effect memory. Would be nice if it would be as simple as a deficiency! Usually not that simple though, I know.

Maybe ask Dr. J if you can skip a month to see what happens?

###

If left untreated, vitamin B12 deficiency can lead to anemia, as well as nerve and brain damage which may manifest in symptoms such as brain fog, memory problems, fatigue, depression, muscle fatigue and tingling in the extremities. In the long-term, this damage can become irreversible

###
Posted 8/3/2020 12:10 AM (GMT 0)
Its always better to suppress inflammation with antibiotic like mino instead of steroids like prednisone...
Posted 8/3/2020 12:16 AM (GMT 0)
Prednisone is a steroid. NO ONE WITH LYME SHOULD BE TAKING STEROIDS. Why is this advice even on here???
Posted 8/3/2020 12:35 AM (GMT 0)

orbitingaround said...
Prednisone is a steroid. NO ONE WITH LYME SHOULD BE TAKING STEROIDS. Why is this advice even on here???

Why are you even on here? You have zero value-added.

I was advocating using prednisone as a proof of concept. If a short 3-5 day course helped brain fog symptoms, you know it's inflammation related, and maybe bicillin or IVIG are options to explore. There's a lot of information you'd glean very easily for next to no risk.

In your simple mind prednisone = lowered immune system = infection runs amok. If you studied the immune system you'd know its more nuanced than that, and there are times when an immunuosuppresive can help. They're using dexamethasone, which is a much more potent steroid, to treat covid.

Post Edited (dcd2103) : 8/2/2020 6:39:01 PM (GMT-6)

Posted 8/3/2020 12:36 AM (GMT 0)

Dmitry said...
Its always better to suppress inflammation with antibiotic like mino instead of steroids like prednisone...

Unless the mino is causing the inflammation.

It can cause intracranial hypertension
Posted 8/3/2020 12:44 AM (GMT 0)
Yeah, mino could bring it too but it cools down pretty quick(up to several months but it most cases up to few weeks) - bugs get used to mino relatively quick ;)

> intracranial hypertension

herx
Posted 8/3/2020 1:34 AM (GMT 0)

orbitingaround said...
Prednisone is a steroid. NO ONE WITH LYME SHOULD BE TAKING STEROIDS. Why is this advice even on here???

She’s been treating for years - at this point it’s more likely immune dysfunction than active infection. If her issue is auto-immune or inflammation driven then her symptoms will improve with Prednisone and she can modify her course of treatment to Bicillin or IVIG if needed. Your body doesn’t become totally defenseless when you take oral steroids, either.
Posted 8/3/2020 1:58 AM (GMT 0)

Dmitry said...
Yeah, mino could bring it too but it cools down pretty quick(up to several months but it most cases up to few weeks) - bugs get used to mino relatively quick ;)

> intracranial hypertension

herx

Are you saying the head stuff is a herx?

I don’t think so because I’ve been off abx for awhile now and the herx wouidnt last this long - also other symptoms haven’t ramped up.
Posted 8/3/2020 2:02 AM (GMT 0)

dcd2103 said...
If prednisone worked then it would mean it’s inflammation related.

The theory behind Bicillin is that it’s a very very small amount of residual spirochetes in the brain that cause this inflammation. Low dose Bicillin acts stealth, it doesn’t push them into hibernation. If you combine it with other abx it will lose its effectiveness. It’s not just Dr K, I’ve seen a few other drs start to take this approach.

If the theory is right then a normal course of abx will do nothing to kill those last few spirochetes, which are leveraging your immune system to have outsized effects. This may be why Dr J has you pulsing your abx 4 days/month, it may be more effective against this type of infection than full dose

Dr J never prescribes daily abx.
The most I took was 13 days a month - but it was harsh (dapsone/riffy/Daraprim/Ceftin/mino/Clindamycin/Alinia)

Not all those above were taken at same time!!
Posted 8/3/2020 2:27 AM (GMT 0)
Looking at the basic ... Is it primarily memory prob? Is it an issue at all times or just work ( stress) related...

Bacopa is s memory herb and possibly gout kola.
Posted 8/3/2020 2:57 AM (GMT 0)

Lightlife said...
Looking at the basic ... Is it primarily memory prob? Is it an issue at all times or just work ( stress) related...

Bacopa is s memory herb and possibly gout kola.

It’s the memory problem that concerns me. When I get overloaded - stressed about all the information I need to understand and retain - then I have trouble retaining the info - even if I heard it a few hours earlier.
It’s the memory that concerns me.

If I could stay calm I would remember more of the information.
But I feel the pressure to learn the job and retain what I’ve learned.

I’m on my own - my next shift and I forgot my notes at work so I can’t even brush up on some of the material.

The main part of the job I have learned quite well - so that’s something.
I’m hoping to perform well enough that I don’t have to discuss this with the Supervisor.

I can talk to my EDMP Rep but was hoping not to - management doesnt welcome edmp employees.

(Employee Disability Management Program)

I enrolled when I was trying to retrain on the previous job several weeks ago.
Posted 8/3/2020 3:53 AM (GMT 0)

k07 said...
Do you take b vitamins? Check b12 levels lately? Just a thought as I know it can effect memory. Would be nice if it would be as simple as a deficiency! Usually not that simple though, I know.

Maybe ask Dr. J if you can skip a month to see what happens?

###

If left untreated, vitamin B12 deficiency can lead to anemia, as well as nerve and brain damage which may manifest in symptoms such as brain fog, memory problems, fatigue, depression, muscle fatigue and tingling in the extremities. In the long-term, this damage can become irreversible

###

Yes I do take B vitamins and extra B12. I have periodically tested it - I think it was out of range once - but it normalized.
I may try and get a lab req for another test. My regular Dr doesn’t seem to be as open to testing as she used to.

I have skipped a month before and I didn’t notice anything significant.

At this point I think I’m two weeks overdue to start my next round.
Posted 8/3/2020 3:54 AM (GMT 0)

Dmitry said...
Its always better to suppress inflammation with antibiotic like mino instead of steroids like prednisone...

But I’m wondering if it’s from the mino.
Posted 8/3/2020 4:06 AM (GMT 0)

Solaris719 said...

dcd2103 said...
If prednisone worked then it would mean it’s inflammation related.

The theory behind Bicillin is that it’s a very very small amount of residual spirochetes in the brain that cause this inflammation. Low dose Bicillin acts stealth, it doesn’t push them into hibernation. If you combine it with other abx it will lose its effectiveness. It’s not just Dr K, I’ve seen a few other drs start to take this approach.

If the theory is right then a normal course of abx will do nothing to kill those last few spirochetes, which are leveraging your immune system to have outsized effects. This may be why Dr J has you pulsing your abx 4 days/month, it may be more effective against this type of infection than full dose

Having followed your posts for a while, Girlie, I’m with DCD and think you need to trial weekly Bicillin for a month or two - the symptomology just screams brain inflammation.

Bicillin is gaining a lot of traction as we learn more about what chronic Lyme truly entails. As long as you aren’t allergic to penicillin and don’t take any other Abx with it you’ll know within 1-2 months max if it’s the answer.

////////////////:::://////:::

Bicillin is the shots? Intramuscular?

I doubt I’d get DrJ to prescribe it - if he’d be on board.

And I don’t have any other way to get it.
Posted 8/3/2020 4:30 AM (GMT 0)

dcd2103 said...
If prednisone worked then it would mean it’s inflammation related.

But inflammation could be from active infection or side effects of abx. Right? But I’ve been off abx for several weeks now so unless it’s intracranial hypertension from mino - not likely side effects if abx, right?
Posted 8/3/2020 4:39 AM (GMT 0)
I should add this:

On the first job I failed at - when I was having trouble at work, my body was shivering uncontrollably and I was in quite a bit of pain.
And my brain was shutting down.

Definitely stress triggers it - BUT that could still mean active infection, right?
... or my nerves just need time to heal?
✚ New Topic ✚ Reply
123