more lucid when having a urine infection? - PSP Association

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more lucid when having a urine infection?

Tillytott54 profile image
7 Replies

good morning all warriors

my mum who has psp I believe is starting to get a urine infection and I have noticed a massive improvement in cognition and speech every time she has an infection but only for a few days .She also advises she feels better than normal.does anyone else experience this ?

it sounds a bit strange I know but i ,uave a small glimmer of who she once was when she ha an infection.

if anyone else experiences this please let me know as I'm very intrigued from a research point of view to see if there is something in the bacteria that helps our psp warriors .

hope.your all having a beautiful day ...keep smiling

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Tillytott54 profile image
Tillytott54
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7 Replies
timbowPSP profile image
timbowPSP

Hello Tillly T, I was diagnosed PSP age 76 in Oct 2018, a bit similar to ur mum. Have had a couple of Covid bouts, but not too serious, and no jab (early on the govt website said "Don't" if you have a neuro condition). Lots of health regimes going on, like comp therapy, targeted exercise, diet, supplements. My brain is not quite like it used to be, and I am really interested in your observations - have you passed them on to PSP research people? There are about 8 different types of PSP, with different rates of decline. I have written up my 'journey and some advice' in 3 pages, and happy to send to you, but better by email. Please send .... and very best wishes to ur mum. TIMbow PSP

Tillytott54 profile image
Tillytott54 in reply to timbowPSP

Hi, timbowPSPI will take you up on the offer of your journey ,I will message you with me email address. Thank you .

Lara_2004 profile image
Lara_2004

Hi Tilly T, I was diagnosed with PSP in February 2021 after being misdiagnosed with PD in March 2017 and while I suffer with bouts of bladder infections I haven't noticed any changes while I have an infection. I'd be most interested to learn if there is anything in what you have observed. Best wishes Lara

binnyrox profile image
binnyrox

Hi

I’m diagnosed with PSP like disease - Multiple System Atrophy

Yes - I feel better on antibiotics

The doctors have explained they think there is an underlying bug that for some reason is not showing up on the blood works

So when I’m hospitalised and given a battery of antibiotics for pneumonia, UTI etc - I am generally better in all aspects

However a few days home after discharge - I revert to not able to do so much

Right now the doctors are trialing a cocktails of antibiotics for the gut.

They decided to address the gut as I have very bad constipation, bloating etc

That’s taken long term but the change in me has been night and day.

The healthcare team think it’s remarkable and I will purse taking it

Just sharing my experience- your doctor would be the best to seek advice from

Kindest regards

BR

ReverendBadger profile image
ReverendBadger in reply to binnyrox

"The doctors have explained they think there is an underlying bug that for some reason is not showing up on the blood works"

OMG ! Holmes AND Watson would be appalled, that's ridiculous. If the lab doesn't find a bacterial infection in the blood then the logical conclusion is that there isn't one NOT that there is a mysterious ghost like bacteria that can evade detection. The obvious logical conclusion is that the antibiotic is doing something else (other than destroying bacteria) in the body to make you feel better. We absolutely know that antibiotics can do other stuff because they can cause side effects e.g. nausea. Investigations should start with a consideration of the exact modus operandi of each antibiotic. Some work by disrupting bacterial protein and, in the MSA affected brain, the troublesome alpha-synuclein is a PROTEIN.

ELEMENTARY ?

DoingwhatIcan profile image
DoingwhatIcan

Hi there… my dad used to get constant urine infections from his catheter. Unfortunately he had more classic symptoms and was always slightly delirious and wiped out during these periods. (He has PSP). Definitely an intriguing situation!

Tillytott54 profile image
Tillytott54

just an update,it is not a urine infection but a chest infection this time,.Also i wasnt particulary clear with my original post . The initial onset of infection before any antibiotics is when mum becomes more of her old self..imprimproimproved speech ,improvimproveimproved motor skills and mobility . Once the qntibiotics kick in and she is infection free then she seems to regress back to almost non verbal with very limited mobility .

Either way i am looking at the possibility that it is the infection releasing cortisol which acts almost as a dopamin and this causes the more lucid moments before antibiotics take over and calm it all down...very odd but i will be passing on what i find to the pspa researchers and anyone else that will listen .have a good day

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