Brain inflammation or active infection?

dcd2103 said...


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

In your simple mind prednisone = lowered immune system = infection runs amok.

That’s an insulting response.

buhner writes about autoimmune type CNS symptoms from Lyme/ Bart etc and writes that this can be self-sustaining once initiated by infection

he recommends Japanese knotweed, Uncaria Rhynchophila and Kudzu root tinctures, in particular, to help break this cycle and does mention that this can take some time due to the nature of the disorder and the vicious cycles of symptoms.

he also writes about something called excitotoxicity in the brain cells with Bart and Lyme - basically, stimulation the brain would normally be able to tolerate results in over-stimulation to teh extent that the cells can die ( doesnt sound good!! ) but i should add my partner had this to the point of seizures and is functioning well again at high-level jobs so recovery is possible

I had a dramatic lack of stress tolerance with this illness - whereas before I specialized in work as a troubleshooter and other crisis management type roles and I think these treatments have helped me considerably (at least as much as anti-biotics).

if it were me i think i would be willing to trial the challenge type approaches mentioned above - as the chances are they would be unlikely to do long term damage ( especially the ones with commonly used herbs).
but should give you a clearer direction on infection or post-infection effects.

i think i have also posted before on the use of nerve growth factor generators - like Lions Mane mushroom as a way of helping regenerate cells in the CNS and recover lost function after treatment. i plan to do this myself once I feel confident the infection is dealt with.

Ok,so you mention shivering. I start shivering/shaking when i watch my kids basketball games or anything stressful! I know my nervous system is screwed up and I’m definitely shifted sympathetic. I can’t handle much stress without these physical things happening. I also start holding breath and tightening muscles. I try breathing exercises and such but very hard to control. I also can’t remember anything when I’m in this state. My husband will ask me questions about their games and it’s like a memory block. I always say it feels like a blur. So...maybe DNRS? I hope others have more ideas on this route....I’ve even tried xanax, passionflower, and few other “calming” herbs and they do not help.

In regards to intracranial hypertension - as you may recall i went down that road too bc my mri’s mention it and i had some optic nerve dilation. It was ruled out - but I still wonder about that. I don’t get headaches when laying down which is a symptom.

Post Edited (k07) : 8/3/2020 6:14:08 AM (GMT-6)

k07 said...
Ok,so you mention shivering. I start shivering/shaking when i watch my kids basketball games or anything stressful! I know my nervous system is screwed up and I’m definitely shifted sympathetic. I can’t handle much stress without these physical things happening. I also start holding breath and tightening muscles. I try breathing exercises and such but very hard to control. I also can’t remember anything when I’m in this state. My husband will ask me questions about their games and it’s like a memory block. I always say it feels like a blur. So...maybe DNRS? I hope others have more ideas on this route....I’ve even tried xanax, passionflower, and few other “calming” herbs and they do not help.

In regards to intracranial hypertension - as you may recall i went down that road too bc my mri’s mention it and i had some optic nerve dilation. It was ruled out - but I still wonder about that. I don’t get headaches when laying down which is a symptom.

Were you on mino?

I believe the shivering started when I went on mino.
I remember travelling to see our son and his girlfriend - summer of 2015 - I had just started in the mino. ...and we went out for dinner - it was hot out - but I wanted to eat in the outdoor patio restaurant - but everyone else wanted the indoor air conditioned restaurant.
I had a jacket on the entire time and had a hot bath in the hotel afterwards.

But the shivering is internal - and even though I get it in the summer - the cold seems to exasperate it.

I had my eyes tested (optic nerve) because I was concerned. It was fine

I tried the calming herbs too - didn’t touch it.

I have been on mino in past. So the shaking/shivering is not while on abx. My shaking is internal too. I get very cold when nervous. Cold makes everything worse for me.

I doubt it’s the mino but go with your gut on that one. I actually am starting mino back up today for my rosacea which may be going into my eye now. If it makes shaking worse I’ll let you know.

The terms my LLMD used was “raw” when referring to my head pressure

And he said my nervous system was stuck on the sympathetic.

Also mentioned glutamate when referring to my brain/head stuff.
And take taurine for that.

Zbreezy said...

Girlie said...
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?

Hi Girlie,

I was just lurking in this one because I don't have a solution but you mention shivers memory etc. I experienced the shivers and they would come like a train from deep in my lower spine. One occasion it brought me to my knees and I wasn't sure I could move. Typically they were not that intense but enough to make me feel sick. I had brain inflammation to the point where I could feel it all day. My memory has been absent as well.(I have other symptoms but just focused on yours). I'm about 2 months into rif/doxy/alinia and the inflammation is starting to go down. My memory comes back temporarily so I'm getting the feeling that things will slowly improve. For the chills I stay dressed in long sleeves long pants and heating pad/hot baths mitigate the discomfort. My neighbors think I'm bat crap crazy because they see me taking the trash out in full winter attire in 95* weather. That's the way it goes. I personally think it could be active infection for you but I'm not exactly a physician either. I hope you can get some relief and wish I could be more of a help.

++++++++++++++++++
Thanks for sharing your experience!
That’s great your memory is coming back - hope it continues !!


There has been some improvement - One symptom I used to have : in the morning as soon as I wake up - my body would shiver from the top of my spine and down my legs.

Now it’s just my legs that shiver on waking.

This stuff is enough to make us
bat- sh** crazy.

Describing it to someone who hasn’t had lyme - doesn’t do it justice.

My memory has improved some - compared to a year ago - my husband keeps reassuring me that it will continue ... i hope he’s right.

So you’ve been treating lyme and CO’s for just two months?

Girlie, i WOULD NOT USE prednisone. Even more if we are fighting infections, prednisone is glucocorticoid and a no, no for infections. IT suppresses your immune system BADLY. Also it messes with hormone regulation. There are other thinks for inflammation on the brain, if thats the problem, wish you u dont even know.

Have you tried NAC?

NAC as a precursor to the antioxidant glutathione modulates glutamatergic, neurotrophic, and inflammatory pathways.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3967529/

Its have been proven to be antiinflammatory:

https://www.researchgate.net/publication/51698900_Effect_of_N-acetylcysteine_treatment_on_oxidative_stress_and_inflammation_after_severe_burn

And of course its a biofilm buster.

isitlyme said...
Girlie, i WOULD NOT USE prednisone. Even more if we are fighting infections, prednisone is glucocorticoid and a no, no for infections. IT suppresses your immune system BADLY. Also it messes with hormone regulation. There are other thinks for inflammation on the brain, if thats the problem, wish you u dont even know.

Have you tried NAC?

NAC as a precursor to the antioxidant glutathione modulates glutamatergic, neurotrophic, and inflammatory pathways.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3967529/

Its have been proven to be antiinflammatory:

https://www.researchgate.net/publication/51698900_Effect_of_N-acetylcysteine_treatment_on_oxidative_stress_and_inflammation_after_severe_burn

And of course its a biofilm buster.

///////////////////.

I won’t use prednisone - no worries.


I had taken NAC several years ago along with so many other supplements.

We probably have some already - I think it’s one that my husband takes.

I will try it again. Any specific instructions?
Empty stomach or ok with food?

isitlyme said...
Always with food to avoid stomach issues. i always take it with food. I take 600mg a day.

Thanks!

[quote]

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.

Yes, they’re IM shots. Why wouldn’t your doc be on board? You’ve pounded your body with abx for years - Bicillin is as benign an abx treatment as you can get and helps many with the lyme brain symptoms by reducing the inflammation.

You could always try NSAIDs on a regular dosing schedule as an anti-inflammatory challenge if you can’t get a prednisone pack.

astroman said...
GirlIe- When’s the last time your thyroid was tested I know you did it pretty extensively in the past.

The last time I had it tested was with Dr J - Around April, 2018
And I believe it was TSH, FT3 , FT4 and I think RT3 as well.

It was all good.