Can lyme disease cause kidney and bladder pain

Hi everyone. I need help to try and figure out whats causing bladder and kidney pain. Ive had LD for about 13 years and this particular kind of pain has happend twice.
I have had a couple of UTI's over the years that cleared up with abx. but this is different. The first time a couple of years ago I had bladder pain that moved up into my kidneys. One culture was positive and one was negative. So not sure if it was a uti. I took augmentin.
It cleared the bladder pain but the kidney pain didn't go away in both kidneys. I ended up with a kidney stone blockage on top of all that as well. They gave me several abx. in hospital also because my wbc count was high. After surgery both of my kidneys hurt for about 4 months and finally went away.
Just recently in march I started having bladder fullness and discomfort. I called my pc dr. She started me on augmentin and had me come in for a urine culture. It was never sent off. Ugh!
So i completed the abx and they did seem to help my bladder but the pain came back.
My kidneys started hurting about 2 days into abx. treatment. The augmentil made me feel awful. Herx.? I went to urologist and they did a culture while on abx. that came back negative.
I went back to pc doctor a few weeks later and they started me on another abx. Cephalexin after doing another culture. It came back negative so after 5 days of the abx. I stopped taking it.
Both of the abx. made me feel so bad. Like a herx. reaction. I could barely function.
I dont do well with antibiotics at all. I have tried many combinations over the years and had to give up on them because that just weren't getting me better. Ive tried all different kinds of LD treatments and most didn't work or they caused side effects that were unbearable.
So i pretty much stopped all treatments and just live with the LD and manage with a healthy diet.
Im now wondering if this could be interstitial cystitis. But I also have the kidney pain and extreme fatigue.
Has anyone else had this type of thing happen? Im so worried that this pain isn't going to go away and I can barely function. Any ideas on what might help this horrible pain? I cant hardly stand it. Any information would be greatly appreciated.

WBF makes some very good points.

My first suggestion is to buy your own urine test strips. Save yourself lots of money and time on doctor visits by doing that part yourself!

These infections can affect that bladder, and some people do develop interstitial cystitis with Lyme and co-infections. I have had bladder and kidney pain from herxing, as my urinary tract becomes irritated by endotoxins being processed out. Bladder pain happens as well when I menstruate. Kidney-area pain also has occurred for me when I am experiencing adrenal fatigue (adrenal glands supposedly don't hurt, so maybe it was a coincidence).

Definitely ask your doctor to culture the urine if you get another infection, as repeated UTIs that don't clear with antibiotics are a concern. Do you use well water, hard water, or in some other way ingest a lot of minerals that could lead to more kidney stones? Are you on D-mannose, anamu, cranberry, chanca piedra, or anything else that might help the urinary tract in general? Any fever or chills?

I'm also curious about treatment for you. Mold and MCAS can make antimicrobial treatment difficult to tolerate, as well as cause reactivity to ingested substances in general. Are you dealing with those issues at all?

As for pharmaceutical antibiotics, they are not a treatment option for me, either, because the few I'm not allergic to make me vomit. I also react strongly to non-pharma treatments and often find them intolerable. Are you using herbs, homeopathy, rife, energy work, PEMF, or anything in addition to diet?

“ 1. Bartonella is known to affect the bladder. You didn’t mention bartonella.“

There’s even a term for it: “Barty Bladder”

Saraeli,
I do have the at home test strips. They are usually negative or just show white blood cells but no bacteria. I have tried d-manose and alot of cranberry juice until I read that it was bad for interstitial cystitis. Im now on an IC type of diet to see if it helps. Im like you I can't tolerate much of anything. Im not currently doing any treatment other than meds for symptom relief. No fever or chills and I have had two urine cultures that were negative.

Post Edited (sunflower73) : 5/14/2020 5:05:08 PM (GMT-6)

Girlie,
I tested negative for battonella about 10 years ago and these symptoms have happened twice starting back in 2018. It did eventually clear up the first time after about 4 months so I hope it will go away on its own again. I do have an appointment with a new urologist coming up soon. I will post about my visit when I can. Thank you

Do false negatives happen with labs like Igenex, Armin or MDL? I know it's common with ones like Labcorp, but wondering about specialty labs.

Hi Sunflower

Quorum sensing: Once the bacteria population gains mass, they begin to work in groups. This improves their survivability. They sense secreted chemicals that alert each other of their presence, team work approach. This is part of their intelligence from eons of evolution. Then they start the biofilms which is a problem for the bladder. As for my treatment protocol, please see my post last week called “My Lyme Story, one that ends in remission, by Rig2044”. It was just a few days ago and is back a page or so. Most of my history and approach is contained. After a quick read, if you wish more info on it, I will provide it. Cheers and wishing the best of outcomes for you.

Thanks for all the info. It's hard to know what to do when you feel so bad. The pain in my kidneys and bladder are really bad. I dont really even have the energy to research and I cant find a doctor near me. I live in GA. Im wondering if I have IC from the LD. I have an apt. with a new urologist coming up but he probably won't be much help. I wish I had the support of a doctor but I dont have any close to me and most of them use antibiotics and dont take insurance. I have a naturopathic dr. close by but each visit is about $400. I really dont know what to do. I cant hardly stand the pain and fatigue anymore. I hope that it will get better on its own. The last time that I had kidney pain It got better after 4 months but I didnt have the bladder pain with it.

Walkingbyfaith,
I would like to find a LLND in Atlanta if possible. Do you know of any in that area? I was seeing a Dr. at Phoenix medical group for a while but she moved out of state.