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Neurogenic bladder (nerve issues)

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Posted 4/13/2024 11:39 AM (GMT 0)
I'm clinically being treated for Lyme and co infections. Im 9 months in on abx on Dr J's protocol from my LLMD. I have a lot of neuro issues. about 7 weeks ago basically over night I started having a lot of bladder issues. I believe it to be a nerve signaling issues since all my nerves are messed up in my body. I lost the sensation of when I needed to urinate. I had to drink a ton of green tea and water just to feel a slight sensation. A couple weeks later it turned into constant false strong urges to go when I didn't need to. It kept me awake for weeks with no sleep. I would have to force out drops to rid the urge which would come right back minutes later. Just about any bladder issues you can think rolled into one. Loss of sensation, hard to start stream, weak stream, constant false urges, having to push really hard to get anything out etc. about three weeks in I started having very bad burning nerve pain in my genitals as well which has subsided. It's definitely a nerve signaling issue to the brain and everything is misfiring. I did do a urine culture with no infection as well. Has anyone had anything similar?

Post Edited (Eric H.) : 4/13/2024 5:04:36 AM (GMT-8)

Posted 4/13/2024 11:44 AM (GMT 0)
This sounds like it could be urinary infection? Have you had this checked out by your doc?
Posted 4/13/2024 11:45 AM (GMT 0)
I had a urine culture. No infection.
Posted 4/13/2024 11:50 AM (GMT 0)
Urine symptoms were some of my first symptoms, often it would show up as no infection at the doctors. Later down the line my LLMD said that Lyme and Co can infect the urinary tract / bladder etc and cause these symptoms which is why it wouldn’t show up on the regular culture test at the GP because they don’t test for that.

I found using d mannose powder really helpful! And the obvious of treating Lyme and Co, hope you can get some relief
Posted 4/13/2024 11:52 AM (GMT 0)
It seems to slowly be getting better at week 7 but still definitely not close to normal. I hope it continues. I appreciate your help. Thank you.
Posted 4/13/2024 12:09 PM (GMT 0)
Maybe try d mannose powder, it’s quite cheap and was life changing for me! Before using that regularly at much higher doses than is recommended, I was in constant antibiotics for UTI and missing a lot of school / work bc of constant UTI. Since the d mannose powder and treatment for infections I no longer have those issues
Posted 4/13/2024 12:17 PM (GMT 0)
I know it's more a nerve/signal related issue than a problem with the bladder. I'm not sure if from treatment stirring things up or just my body getting worse and showing more symptoms this far along. Neurological stuff is so scary. I was urinating fine just two months ago and seemed to happen over night. Blows my mind.
Posted 4/13/2024 2:44 PM (GMT 0)
A couple of ideas:

First, I'm guessing based on your name that maybe you have a prostate? Any chance it's enlarged and pressing on on nerves? Possibly epididymitis, like maybe from riding a bike a lot?

Second, do you have mast cell activation syndrome? MCAS causes interstitial cystitis, which feels like having a urinary tract infection but with no infection present. It affects the nerve signaling, too. All of my symptoms of peripheral neuropathy, small fiber neuropathy, twitching, paresthesia, etc. went away when I began treating MCAS.

I hope you find some relief soon!
Posted 4/13/2024 6:18 PM (GMT 0)

saraeli said...
A couple of ideas:

First, I'm guessing based on your name that maybe you have a prostate? Any chance it's enlarged and pressing on on nerves? Possibly epididymitis, like maybe from riding a bike a lot?

Second, do you have mast cell activation syndrome? MCAS causes interstitial cystitis, which feels like having a urinary tract infection but with no infection present. It affects the nerve signaling, too. All of my symptoms of peripheral neuropathy, small fiber neuropathy, twitching, paresthesia, etc. went away when I began treating MCAS.

I hope you find some relief soon!

I believe it's just a signaling issue with nerves and the brain chemistry being off.
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