D Mannose for urinary urgency, dribbling, discomfort/neg. urine culture

[Kimflow]

Hi Everyone,

 

Has anyone used D Mannose successfully for urinary urgency, dribbling, discomfort and a negative urine culture. My theory is that for some, when you go on antibiotics/herbals, the bacteria(all kinds as well as tick related coinfections) like to congregate in the warm moist bladder and cause irritation. I have seen this pattern before when we first started on antibiotic treatment and it triggered urinary urgency, dribbling, and discomfort that lasted several months and now again, we are seeing these issues after switching to herbals.

 

Another theory I have is that they cling to bladder lining which is why some get repeated negative urine culture. Been there, done this as well.

 

In my searching of the forum, I did see one or two comment on D Mannose as helping. Nothing recent.

 

I also hope that since the D Mannose is absorbed quickly and shunted mostly thorugh the urinary system, it will not cause any gut growth of bacteria since it is techincally a sugar. I would imagine that other lyme/IC sufferers reporting relief would also have leaky guts and they are not complaining of bacterial growth in intestine afte rusing D mannose.

 

Finally, in my searching, I am coming across something called mannose binding lectin deficiency .....big sigh....seems like several of the kids on this forum are coming up with this as well. Will be researching this now.

 

Thanks for any input on the above.

 

Kim

[emst]

Is this urgency a new thing for you?

We have this problem only in the spring w allergies etc. My working assumption is that it is a histamine problem.

Would welcome any input, ideas.

[Kimflow]

Emst,

 

That is interesting. So in this case, it might be more reflective of the autoimmune nature of PANDAS rather than caused by herx. or bug accumulation in bladder. etc. I will have to go back and look up when this happened to us before. The first occurrence was definitely Feb. of 2012 when we had the crisis and received dx of PANDAS/Syd. chorea. Upon starting abx. treatment, through March and April, the urinary issues started. Then it just mysteriously stopped after several months.

 

It was definitely again around March when it started this year and I connected it to starting herbals causing herx/bugs migrating but it also is interesting the same time as far as Spring. Ineresting. he has no other allergy symptoms.

 

I can also tell you that he had a 3 days stint of it last year after getting a filling...but this was in May...so that owuld seem PANDAS flare related. It did not happen in March /April.

 

What has given you relief? Have you found relief with antihistamines. Zyrtec is not tolerated here.

Kim

Edited May 14, 2015 by kimflow

[jan251]

D Mannose works for my ds for urinary urgency, which has been an issue more at bedtime and overnight than during the day. (Magnesium citrate also helps, for reasons unknown. Overnight wetting has not been a problem while on antibiotics.)

 

Here's my take, for whatever it's worth: at first and until recently, I assumed the mannose worked for the obvious reason, cleaning out e coli or some other bacteria from the bladder by binding to the bacteria. And maybe that's the only mechanism. But, I recently came up with a different theory.

 

I believe the urinary urgency has something to do with the PANS immune reaction - after all, it's a symptom, right?

 

I have read that D-mannose can encourage the production of IL-10.

 

IL-10 can signal certain types of macrophages to reduce certain types of activity (e.g. reduce Th1 infection response). IL-10 may be the signal that calms down an inflammatory response once the infection is under control, and thus it needs to be properly timed.

 

However, if there's still an infection present that is the cause of the macrophages' response in the first place, then IL-10 (and by extension, D-mannose) may exacerbate the infection if it is not properly timed, even though it might temporarily calm down some of the inflammation symptoms.

 

If I recall correctly, most of the D-mannose goes out through the urine in 90 minutes. So, relatively short-acting. As it is so short-acting, I tend to think it's relatively safe to try.

 

If anyone has thoughts on this idea, I'm interested to hear whether you think this is plausible.

Edited May 16, 2015 by jan251

[sarojane]

Coincidentally my dd had this issue in the extreme last night. I gave her 4 grams of d mannose and it worked either physically of psychologically in about 20 minutes.

 

She has just recently been diagnosed and we had used the d mannose for uti in the past and it has worked so she was much calmer just by me telling her I was going to use it.

 

Her urine culture was negative as well. Is the bedtime urge to pee exacerbated by the ocd?

[Kimflow]

Jan 251, Thanks so much for sharing that information on IL10. Very interesting tidbit. So it could very well be that the bacteria/etc. are congregating in the bladder causing irriation/inflammation.

 

Maybe the way around D mannose calming of inflammation yet potential exacerbation of untreated hidden infection would be to have urinary antiseptics on board as well (like herbs) while using the D mannose. IN fact, the ones in the health food store do have dmannose mixed iwth uva ursi, etc. My mind just goes back to the people who have been using D mannose as a maintenance and they do not seem to end up in a worse situation....atleast the ones that I have read. Time to do more research.

 

Emst, Thinking more on histamine issue you mentioned....I am pretty sure bacterias/parasites/protozoa are related to causing a rise in histamine or affecting mast cells. Maybe this is just mast cell activation in bladder like others get mast cell activation in other parts ot he body. Just thinking out loud.

 

Sarojane, Did your daughter's symptoms "flare" after starting treatment? As that is what I am connecting to our urinary flares...once while beginning antibotic treament and 2 years later while beginning herbals. Or do you connect it to something else such as Spring Season or PANDAS flare? And yes, I believe that ocd/anxiety can cause the urinary symptoms to increase.

 

Thank you for all the input as our kids will hopefully benefit from all of our minds brainstorming together.

 

Kim

[sarojane]

Hi Kim,

 

She was on day 3 on augmentin when the crazy pee urge happened. She was insanely wound up right before bedtime and went like 10 times in an hour. Mostly felt like she had to go but couldn't. I finally gave her .5 melatonin and the d mannose so she could sleep.

She just started the PANDAS symptoms two weeks ago so thus is scary to us.

I've noticed though the nights I end up giving her the melatonin she has a smoother day. I know I'm not supposed to rely on it, but it sure is tempting. I found that giving her p5p tones her symptoms down as well.

Nebulizing 2 drops of nascent iodine 1 time per day really seems to bring the old kid back for quite awhile also.