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junkyardjean

reason behind the frequent urination?

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Does anyone know the biology behind the frequent urination in PANDAS? Do lab results show any change (in kidneys or urine sample)? Or is it "just" a symptom?

 

Thanks in advance....

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I think I've read it's something to do with the part of the basal ganglion inflammed that controls the internal sphincter for urination, therefore signals get eratic. I could be wrong though, maybe someone else will chime in.

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Does anyone know the biology behind the frequent urination in PANDAS? Do lab results show any change (in kidneys or urine sample)? Or is it "just" a symptom?

 

Thanks in advance....

 

Just a symptom- my son had multiple urine specimens done during the time when he was having urine frequency- before we knew about PANDAS- they were always normal. My thought on it is that it is OCD behavior---instead of counting, rituals, things in order etc---it is constant obsession to use BR and compulsion to act on it. My son would go 8 times per hour- there was nothing left in bladder "to go" but he would squeeze out a tablespoon of urine somehow.

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I think it can be interpreted as a neurological tic, the tics in PANDAS often seem to involve more unconcious parts of the nervous system (as opposed to "regular tourettes syndrome", I have severeal friends with "just TS" and their tics are often more handled by will power, even if they often can't resist the will). My son with pandas has been ticking in hickups burps etc, and I think the emptying the bladder thing is also more of a tic.

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For us, frequent urination was a biological symptom that I can only imagine was related to the inflammation in the basal ganglia (either directly the function of the inflammation within the basal ganglia or perhaps a disruption of the basal ganglia communicating with or even pressure from the inflammation on the hypothalamus). My PANDAS dd not only had the urge to go but urinated in copious amounts all day and all night.

Mary

from Michigan

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I also believe it to be related to the brain. In human anatomy, my professor gave a long lecture about how we actually do have a center in our brain to control this and joked about the phrase "pee brain". There are different areas involved, one of them is in the hypothalamus (which also impact emotions and helps the pituitary gland deal with stress, adrenals, thyroid, etc...so I think there is a huge link there).

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Our older son who had a PANDAS on-set but was later diagnosed with multiple chronic infections had frequent urination as a symptom. I too had frequent urination, urinary urgency/pain with very little release. Prior to my current diagnoses also of multiple chronic infections, I had lab results showing I was dumping excess RBC and WBC into my urine which points to the possibility of cancer or chronic infection. I was frequently treated for bladder infections but often negative when tested. Symptoms would temporarily resolve when treated with antibiotics. The frequent urination even cropped up as a symptom when we were rotating antibiotics and die-off was occurring (Herx Response). Thankfully the symptom for both my son and myself have resolved completely.

 

Here is a little blurb on the vagus nerve and how when its damaged can cause frequent urination and many other symptoms. I have always found the comments to be interesting as one of my son's remaining symptoms is muscle/nerve damage to his soft pallet which is control by the vagus nerve as well.

 

 

The vagus nerve (also called the tenth cranial nerve) is the longest cranial nerve and one of the most complex nerves in the human body.

 

It originates in the medulla oblongara (part of the brain stem) and travels to the pharynx (throat), larynx (voice box), trachea (windpipe), lungs, heart, esophagus, and intestinal tract to the transverse portion of the colon.

 

Disease that cause neuropathy, like Lyme disease and diabetes, can damage the vagus nerve. The vagus nerve activates muscles in your throat, which are vital to a healthy gag reflex, coughing, vomiting, swallowing, and the ability to speak.

 

It also acts like a brake on the heart, slowing down the heart rate. Impairment may result in heart palpitations or tachycardia (fast heart rate). Depth and frequency of breathing as well as blood pressure are also regulated through the vagus nerve.

 

The abdominal branches regulate the stomach, pancreas, small intestine, large intestine, and colon. The vagus nerve also affects the kidneys and gallbladder and stimulates liver functions.

 

Once treatment has begun with antibiotics, most patients with vagus nerve involvement report an improvement in symptoms.

 

Common Symptoms Caused by Vagus Nerve Impairment in Lyme Disease.

 

Hoarseness

Slurred speech

Vomiting

Palpitations or tachycardia

Shortness of breath

High blood pressure

Difficulty swallowing

Gag reflux

GI motility dysfunction

Diarrhea

Frequency of Urination

 

 

Article originally appeared in a regular issue of the Lyme Times Fall/Winter 2005 by Dr. Rhee

Edited by SF Mom

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They don't call the vagus nerve the "wanderer" for nothing. It really does impact SO much. Interesting theory SFMOM. Makes a lot of sense. I also have a lot of bladder issues but have blamed it on the endometriosis. Things that make you go "hmm". Thanks for that info!

 

Additionally, I wonder if this attributes the "choking" feeling I often have. Like someone has their hands around my throat. It's not anxiety or anything like that. Comes out of no where. I'm merrily watching garbage TV, or reading a book and all of a sudden it feels like I'm being choked. Very strange.

Edited by fightingmom

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Our older son who had a PANDAS on-set but was later diagnosed with multiple chronic infections had frequent urination as a symptom. I too had frequent urination, urinary urgency/pain with very little release. Prior to my current diagnoses also of multiple chronic infections, I had lab results showing I was dumping excess RBC and WBC into my urine which points to the possibility of cancer or chronic infection. I was frequently treated for bladder infections but often negative when tested. Symptoms would temporarily resolve when treated with antibiotics. From our families perspective, it is a real physical phenomenon. The frequent urination even cropped up as a symptom when we were rotating antibiotics and die-off was occurring (Herx Response). Thankfully the symptom for both my son and myself have resolved completely.

 

Here is a little blurb on the vagus nerve and how when its damaged can cause frequent urination and many other symptoms. I have always found the comments to be interesting as one of my son's remaining symptoms is muscle/nerve damage to his soft pallet which is control by the vagus nerve as well.

 

 

The vagus nerve (also called the tenth cranial nerve) is the longest cranial nerve and one of the most complex nerves in the human body.

 

It originates in the medulla oblongara (part of the brain stem) and travels to the pharynx (throat), larynx (voice box), trachea (windpipe), lungs, heart, esophagus, and intestinal tract to the transverse portion of the colon.

 

Disease that cause neuropathy, like Lyme disease and diabetes, can damage the vagus nerve. The vagus nerve activates muscles in your throat, which are vital to a healthy gag reflex, coughing, vomiting, swallowing, and the ability to speak.

 

It also acts like a brake on the heart, slowing down the heart rate. Impairment may result in heart palpitations or tachycardia (fast heart rate). Depth and frequency of breathing as well as blood pressure are also regulated through the vagus nerve.

 

The abdominal branches regulate the stomach, pancreas, small intestine, large intestine, and colon. The vagus nerve also affects the kidneys and gallbladder and stimulates liver functions.

 

 

Once treatment has begun with antibiotics, most patients with vagus nerve involvement report an improvement in symptoms.

 

Common Symptoms Caused by Vagus Nerve Impairment in Lyme Disease.

 

Hoarseness

Slurred speech

Vomiting

Palpitations or tachycardia

Shortness of breath

High blood pressure

Difficulty swallowing

Gag reflux

GI motility dysfunction

Diarrhea

Frequency of Urination

 

 

Article originally appeared in a regular issue of the Lyme Times Fall/Winter 2005 by Dr. Rhee

 

 

Now, you have explained my DS's palpitations and tachycardia (even the cardiologist said it's probably from infection, but we're really struggling to get him to even be able to do a minimal amount of exercise, because he keeps having palpitations again (and he's been getting treated for 1 1/2 years.) I told him that I think he's herxing, because it started up again after he started acupuncture (he keeps telling me that he doesn't think the acupuncture is working, but personally, I think he's just herding.) Thanks for the info on the vagus nerve.

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Our older son who had a PANDAS on-set but was later diagnosed with multiple chronic infections had frequent urination as a symptom. I too had frequent urination, urinary urgency/pain with very little release. Prior to my current diagnoses also of multiple chronic infections, I had lab results showing I was dumping excess RBC and WBC into my urine which points to the possibility of cancer or chronic infection. I was frequently treated for bladder infections but often negative when tested. Symptoms would temporarily resolve when treated with antibiotics. From our families perspective, it is a real physical phenomenon. The frequent urination even cropped up as a symptom when we were rotating antibiotics and die-off was occurring (Herx Response). Thankfully the symptom for both my son and myself have resolved completely.

 

Here is a little blurb on the vagus nerve and how when its damaged can cause frequent urination and many other symptoms. I have always found the comments to be interesting as one of my son's remaining symptoms is muscle/nerve damage to his soft pallet which is control by the vagus nerve as well.

 

 

The vagus nerve (also called the tenth cranial nerve) is the longest cranial nerve and one of the most complex nerves in the human body.

 

It originates in the medulla oblongara (part of the brain stem) and travels to the pharynx (throat), larynx (voice box), trachea (windpipe), lungs, heart, esophagus, and intestinal tract to the transverse portion of the colon.

 

Disease that cause neuropathy, like Lyme disease and diabetes, can damage the vagus nerve. The vagus nerve activates muscles in your throat, which are vital to a healthy gag reflex, coughing, vomiting, swallowing, and the ability to speak.

 

It also acts like a brake on the heart, slowing down the heart rate. Impairment may result in heart palpitations or tachycardia (fast heart rate). Depth and frequency of breathing as well as blood pressure are also regulated through the vagus nerve.

 

The abdominal branches regulate the stomach, pancreas, small intestine, large intestine, and colon. The vagus nerve also affects the kidneys and gallbladder and stimulates liver functions.

 

 

Once treatment has begun with antibiotics, most patients with vagus nerve involvement report an improvement in symptoms.

 

Common Symptoms Caused by Vagus Nerve Impairment in Lyme Disease.

 

Hoarseness

Slurred speech

Vomiting

Palpitations or tachycardia

Shortness of breath

High blood pressure

Difficulty swallowing

Gag reflux

GI motility dysfunction

Diarrhea

Frequency of Urination

 

 

Article originally appeared in a regular issue of the Lyme Times Fall/Winter 2005 by Dr. Rhee

 

 

Now, you have explained my DS's palpitations and tachycardia (even the cardiologist said it's probably from infection, but we're really struggling to get him to even be able to do a minimal amount of exercise, because he keeps having palpitations again (and he's been getting treated for 1 1/2 years.) I told him that I think he's herxing, because it started up again after he started acupuncture (he keeps telling me that he doesn't think the acupuncture is working, but personally, I think he's just herding.) Thanks for the info on the vagus nerve.

 

 

I also wondered about this, and figured that it must be connected to the brain somehow, because ds9 would say that he HAD to go pee bc he was afraid that his bladder would burst. He would go every 5 minutes! Then he would tell me not to talk about peeing, otherwise he felt this need to go to the bathroom. At the total height of this recent pandas flare up, it was just unbelievable! At bedtime, he HAD to urinate every 5 minutes or less, but really nothing would eventually come out. Eventually it changed to 15 min and half an hour and then one hour etc. But...then another problem started.... he would urinate, and then about 1 minute later say that he had to go to the bathroom again, just to make sure that his pee could come out and that it wasn't stuck in there. So...he would have like a drop or two come out. Eventually he stopped going to the bathroom one minute later for that drop of pee reassurance, and would just go in his pants, just to reassure himself that his pee wasn't stuck in there. It was very very very odd. The whole thing has been so odd, that it is so obvious that something was "stuck" in his brain. He now is back on his regualar peeing schedule, like before, but wow...this whole episode finally finally finally.... convinced my dh that I am onto something, and that PANDAS is very real. It took the urinary frequency thing to have him see that something was definitely going on, and antibiotics for a number of weeks made a big difference. The urinary frequency was so obvious and odd, that dh knew that something was off. Plus...the fact that ds9 was suddenly afraid that he swallowed stuff that he didn't swallow, like batteries and glass... and ds9s talk about death and dying....and....ds9s throat clearing cough thing that is very obvious, ongoing and loud. Dh is finally on board, telling me to get antibiotics for ds9. Wow..... I definitely think it is all connected to the brain. The basil ganglia seems to be the place where the ocd and tics are coming from. If the urinary frequency is an ocd thing or a tic, then it is from that area of the brain. Someone with a good grasp of brain research will have a better idea about this. Ds9 started off with strep and a uti, that snowballed into so much stuff. This is his 2nd pandas episode, and true to form, it is considerably stronger and more intense than the first one. I didn't prevent the strep fast enough this time. Every other time I would give him some antibiotics when I heard that someone was sick, or at the firs sign of a low grade fever or tic. This time I didn't do that, and he caught strep, and it was a bad pandas episode. I am fearful of the future.

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Thanks for all of the great info - the ped they referred us to (no believer in PANDAS) called me back to say her frequent urination is an attention seeking behavior and we could look into parenting classes (we won't be going back...) We never gave her attention to her peeing, just monitored in our own heads - she will start to pee like crazy (5-6 times an hour), followed by behavioral increase, time passes, then urination goes down, then behavior comes down.

 

I am forever grateful for the people on this forum - hearing other family's stories help me to feel confidence that I am not just imagining things and to keep trying to find someone to help!

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Thanks for all of the great info - the ped they referred us to (no believer in PANDAS) called me back to say her frequent urination is an attention seeking behavior and we could look into parenting classes (we won't be going back...) We never gave her attention to her peeing, just monitored in our own heads - she will start to pee like crazy (5-6 times an hour), followed by behavioral increase, time passes, then urination goes down, then behavior comes down.

 

 

Yes, because when I am seeking attention, I tend to hole myself up in the ladies room, too.

 

I suppose my son wakes up multiple times in the night at 2-5am to pee hoping he will wake us for attention as well.

 

I seriously have no patience for some of these doctors anymore!

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Tpotter: You might look into Avipaxin for your DS's palpitations and tachycardia that might be related to vagus nerve damage.

 

Here are some blurbs on Avipaxin

 

https://www.neurorelief.com/uploads/content_files/Avipaxin%20and%20Modulation%20of%20the%20Immune%20System.pdf

 

https://www.neurorelief.com/index.php?p=cms&cid=202&pid=

Edited by SF Mom

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My understanding is that the auto-antibodies in PANDAS bind with D1 and D2 receptors. One of the sphincters in the bladder/urinary tract is also controlled by D2 receptors. Apparently, the auto-antibodies accidentally relax the sphincter.

 

Buster

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