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My 86 year old mom has stage five Parkinson's. Over the past few months she has had three urinary tract infections that caused extreme confusion. Once she was on antibiotics the confusion went away. Last week the confusion was back. Her urine was checked and it showed no infection. The assisted living facility nurse is saying the confusion could be from the Parkinson's. I understand that this is possible, but how can we know for sure? We requested that blood work be done. She is contacting the doctor about this. I'm feeling really frustrated because over the past few months her confusion cleared up after the infection was addressed. What are the chances that this confusion is suddenly from the Parkinson's? Her last UTI was a few weeks ago. She is currently on a daily, low dose of antibiotics to try to keep the UTI's from happening. She is not on any Parkinson's medication. They were tried in the past but the side effects caused too many issues. Any insights would be appreciated. Thanks.

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Before doing blood work and urine test (culture is best), I would recommend getting her off the antibiotic. Being on it can mask the infection(s). It would need to be at least THREE full days prior to testing. I would recommend more days, since she's been on it for a while. It could be that the UTI has caused issues beyond the urinary tract, so blood work is vital (and can identify any imbalances which may not be related, but still cause issues.)

My son had tonsillitis but the medications were not working. His doctor explained a lot to me, and basically he was self-infecting. The meds could knock it down, but not get rid of it. I KNEW he was still ill and had him tested, but it was only just 3 days since the last dose and he tested negative. Off to a week vacation with his dad and when he returned I was horrified at how he looked! Back on the meds, even stronger ones per Children's Hospital, and finally had the stupid tonsils removed. Even the doc who was going to do the surgery wanted to see him off the meds. I said NO, he's sick enough on them, I won't take him off!

A urologist I saw once had said if there are repeated UTIs it might mean taking a longer course of antibiotics, like 6 months. He did not say anything about using a lower dose - I should think that might keep an infection reduced, but not gone.

If you've ever donated blood, they always ask what you've taken in the last 3 days, because there can still be some in your system. Between age and long term use, I would suggest waiting 4 or more days before testing. Also, being off the antibiotic, it might perhaps result in clearing the issue. IF it clears her confusion and hallucinations, I would make note of it AND report it to the doctor(s). She should NOT be given that antibiotic again. Others have mentioned they had reactions, and fortunately for them, they could minimally identify it and get it changed. When someone has other medical issues, they might not be able to express their concerns or how they feel. Mom's UTIs in MC resulted in severe sun-downing the first time, excessive night time bed wetting the second time.

Although many medications have been around for years, and show good safe use for most people, some of us can't take them. My daughter, at 9 months old, was allergic to one antibiotic, so not only was it not treating her ear infection, she couldn't hold down even a few ounces of water AND broke out in hives! Turns out my mother was allergic to that class of antibiotics too. Once we switched, all better! Also, while I was in the hospital, they kept shooting me with Heparin, something that has been in use a long time and has a good history. For me? Nope. Rather than reducing platelet counts, to prevent clots, it increased them, sky high! Rather amusing to have the hematologist come to my room to question why my platelet count increased. Um, I'm not allowed to eat, so anything going in me is YOUR bailiwick! THEY didn't figure it out until I developed a hematoma. The shots stopped then and magically my platelet count returned to normal.
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Parkinson's Disease affects people differently but it is not unusual for many to experience hallucinations. My husband has been on a medication specifically designed for people with Parkinson's experiencing hallucinations. The brand name is Nuplazid. You may want to ask her neurologist about it. It has made a significant improvement for my husband. Also I highly recommend going to the" Parkinson's Resource Organization" website They have a wealth of information and multiple resources. They also have a variety of focused virtual meetings every month that provide interactions with caregivers, presentations by experts in areas related to PD. such as "deep brain stimulation" , medical hypnosis to control tremor or dyskinesia,legal info etc. The founder Jo Rosen is an excellent resource herself.
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Statin drugs can cause confusion in older patients.
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ChrisInOregon: Please be very cautious about medication prescribed for Urinary Tract Infections. Recently my urologist rx'd a medication for a Urinary Tract Infection, which put me in the hospital with pneumonia. I do not profess to be a medical professional, I am only sharing my story.
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Chris,

Thanks for your response to me. I am glad that you are seeking a second opinion.

I am so sorry that the meds were not helping her. Meds sometimes need to be changed, doses altered and so forth. I hope that you are successful in finding the right meds to treat her particular situation.

Parkinson’s disease is different for everyone and it can be a trial and error situation before knowing what works best.
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It is very common...parkinson's medications contribute to inhibit congnative decrease in the brain. There are alternatives.
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Hello.

antibiotics can really do a number on people but theres no way to tell what will be a problem until someone takes it. And even then if a person cant communicate how does a caregiver know :(

i had a uti last year that required a visit to urgent care. The nurse practitioner would not prescribe cipro which has worked good in the past. She felt Nitrofurantoin 
would be better.

the next morning after two pills i knew something bad was happening even tho i appeared ok to my husband. My body hurt. My think process was cloudy tho i made sense speaking.

i texted my doctor who called in a script for cipro for me and my husband picked it up.

when he gave me the bottle i gave it back to him and told him i knew there were words on the label but i did not recognize what they were or meant tho i was sure they were ok and would work. After taking a couple i was better.

what if i couldnt talk or communicate in some way ?

we need meds but like i said things dont work the same on each of us but how do we know until we take them. Perhaps someone else has a good reaction to Nitrofurantoin but a bad reaction to cipro or something else ?

we wont know till we try.

By the way ... Nitrofurantoin apparently has brand names Furadantin, Macrodantin, Macrobid. The doctor and pharmacist will know.
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It is always difficult to know when there is a disease that can/does cause confusion and hallucination along with a physical problem known to cause same --and these two occurring intermittently and interchangably. Keep checking that urine even if only with a dip stick that measures leukocytes and nitrates in urine on a weekly basis. The blood work likely won't tell much. She may need workup again for changes in the Parkinson's, but you are correct: this is a dilemma that makes it difficult to sort out what is happening.
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We are fighting the same battle of chasing the UTI. Mom does a 180 after her infection is clear and her cognition and behavior is amazing and it slowly creeps back in.
But our biggest hurdle is many antibiotics bring on delirium and confusion so she is unable to be on a low dose antibiotic as many are put on. It could be the low dose antibiotic causing the confusion or delirium like behavior. My mom can not take any cephalosporin (she has sever cognitive decline on this class of antibiotics almost worse than what the UTI does to her). That class of antibiotics brings on a toxic encephalopathy I would check what type of antibiotics she is on and try seeing if stopping them helps and if you see a difference in her confusion. 🙏🏼
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Confusion can have many causes: infections, altered blood chemistry, poor oxygenation, Parkinson's disease, stroke... It would be best for a doctor to evaluate her and treat the causes that are identified. At this point, this is your best option.

Meanwhile, she will do best with a consistent routine, patient caregivers, and encouragement.
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My 96 yr old Dad has a UTI almost every month.

Whenever untreated it goes to worse from being agitated, to talking excessively and hallucinations to thinking everyone is trying to poison him.

A few days after starting antibiotics, he's back to normal or rather his normal.
He has shirt term Dementia
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My mom was out on a nasty antibiotic for a uti which then ruined her good bacteria and caused a yeast infection. Get probiotics and natural mucana or bacopa. My mom went downhill in a month cause of the medicine. Some infections don’t show up in blood tests if it’s just a little bit. They can be horrible where the person is very delusional and forgetful. I went to penn in Philly.
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My mother has repeated UTIs over a period of over ten years. Every time she would get a course of antibiotics sometimes as a result of a dip test and sometimes a full lab. culture. However it wasn't until in desperation they gave her two concurrent antibiotics at double strength for double the standard course length that they actually stopped them. This was a final outpatient treatment roll of the dice, otherwise because they said she had the "bacteria" in her system all the time they said it would be hospital for IV antibiotics next time. Fortunately for her this rather sledgehammer approach worked and she has now been infection free for about three years. It is hard to persuade Drs to move outside standard dose regimes but we were fortunate to have one who would. So it is possible your mother's confusion is still from carrying the infective bacteria even if they are not showing on test results.
Equally it may be a result of the Parkinsons or she may have developed dementia that has been masked by the Parkinsons symptoms up until now. Without an brain scan it is going to be impossible to diagnose and even knowing isn't going to make a huge difference either way. Providing her with as much comfort and peaceful life is probably what you and her Drs should be hoping to achieve.
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Was the UTI test a culture? A dip test s not alwAys accurate. A culture will tell the type of bacteria then what antibiotic is most effective on it.
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disgustedtoo Apr 2021
Additionally, if she's on a low dose antibiotic, it could be masking a mild UTI.
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The hallucinations sound like Lewy body dementia, and confusion is one of the first symptoms of that. My mom died with Parkinson’s and Lewy Body dementia. With the onset of dementia, Mom would say, “I guess I’m more confused than I thought.” She would read emails from yesterday again today, until my dad got so frustrated he shut off her computer service. Animals are common hallucinations with Lewy Body —a cat on her lap or a dog at her feet.
The low level antibiotics should prevent the UTIs —if they don’t, why continue? Yes, get her checked again for UTI, but don’t be surprised if the results are negative.
Warm thoughts to you,I suspect difficult times are coming
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Ask to be evaluated for Lewy Body Dementia..huge mental swings..not always in dementia..
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My 87yr old mom had similar issues...she was evaluated and has Lewy Body Dementia..It appears like Parkinsons..see a neurologist or a geriatric specialist. A tough road indeed..so sorry..
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The person at my house also has advanced Parkinson's. There is something in her urine that about 3 days before she tests positive for a UTI, I get hives, itch and get these insane migraines. So, I would get her tested again in a few days.

You can make an appt. with a neurologist, they can run tests for PD psychosis.
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ChrisInOregon Apr 2021
Yes, I believe an appointment with a neurologist is a good idea. And a retesting of her urine should also be done.
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My mom is in a hospice house with Parkinson’s disease. She takes Sinamet. Sometimes the amount is adjusted but I can’t imagine her not taking any meds.

What kind of side effects does she have from
the meds?

A person can develop dementia with Parkinson’s disease. Does she have that?

My mom is also on a very low dose of Seroquel. It has calmed her anxiety.

What does her doctor say about the confusion? Is it possible to get a second opinion on everything?
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ChrisInOregon Apr 2021
My mom had hallucinations from the meds and was told to discontinue them. This was several years ago.

She has not been diagnosed with dementia. Her thinking has slowed down, she will forget things sometimes, but these bouts of confusion and hallucinations she is having is completely different.

Still waiting to hear from the doctor. We have an appointment next Wednesday. And, yes, I believe a second opinion is necessary.
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