heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
sorry if this is TMI, but hey, that's lyme disease, right?
so, my bladder/interstitial cystitis-related symptoms have been acting up lately (this is actually what convinced me to start treatment again; i just had my first appt with my LLMD yesterday).
my bladder symptoms were what first convinced me something was seriously wrong with my body; they started about 3+ years ago, and of course, i was diagnosed with IC at the time (this was pre-lyme diagnosis).
i guess i'm just wondering if anyone else has experienced this particular symptom. my kidneys seem to be involved as well.. in addition to urethral pain, i have periods of flaring where i'll have to pee three or four times in a row, literally every ten minutes. this is common with IC, but the strange thing is that there is a large amount of very dilute (clear) urine each time, whether or not i've been drinking lots of liquids. this isn't a constant symptom (thank god), but it happens at least a few times a week now, often after eating. oh, for those who are curious, i just switched to a gluten-free, mostly dairy-free, sugar-free diet, per my LLMD's recommendation.
posted
Hmmmm... I don't know. I know my mother had problems with that and the drs were clueless. Of course they didn't ever dx her with Lyme, which I am certain she had.
I am aware of a hormonal problem which can cause a person to urinate large amounts and frequently. It's not female hormones, but a lack of pregnenolone or one of those other hormones.
However, it may just be from clearing toxins or from the IC itself. Besides FM, IC was also one of my first diagnoses. It's rough!
Lyme treatment has cleared mine up a lot!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
one thing to think about and check out is refluxing. I have had 8 urological procedures and surgeries in the last year and the last one created a refluxing ureter on purpose so i dont blow my ureter out of my bladder where they re-implanted it.
This means that I am missing the valve that stops urine from going from the bladder up to the kidney. the bladder is a big dumb muscle and when it contracts (when you pee) the urine shoots wherever it wants. usually this is just out thru the urethra. but if your ureter is refluxing it could shoot up to your kidney. (or worse out into your abdomen --viola peritonitis)
then 10 minutes later you have to pee out the pee that shot up to your kidney.
It would be very difficult to diagnose a refluxing ureter without a retrograde pyolgram or flouroscopy.
What does your urologist say?
other than that, i have IC friends who have siilar bladder habits.
I am sorry for your pain!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Cobweb
Unregistered
posted
heiwalove- and you thought you gave TMI-Trails just blew you out of the water(closet)!
I have IC,too. when I recently made drastic changes in my diet, similiar to what you are doing, there was a dramatic increase in peeing.
I think it was related to the adjustments my body was making to the change in diet.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
thanks for the responses so far.
cobweb, i had this problem prior to switching my diet (today was my first day on the new diet, actually), but maybe the diet is exacerbating it.
trails, i've never heard of that! interesting. is there anything that can be done for that? and if a refluxing ureter is indeed the problem, wouldn't i always be having the symptom, not just occasionally after i eat? hmmm.. i don't have a urologist anymore. do you think i should find one? i don't have insurance right now and am paying for my LLMD entirely out of pocket (ugh), so i don't know that i could afford a urologist too.
i told my LLMD about the symptom and she didn't seem too concerned.. she prescribed diflucan, which supposedly can help with IC and lyme, in addition to candida. she also did a full thyroid panel.. she thinks i might be hyperthyroid. not sure if that could contribute or not. *
edited to add: i just googled 'refluxing ureter,' and found the following symptoms mentioned:
Bedwetting (nocturnal enuresis) Collection of urine in the renal pelvis (hydronephrosis) Distention in the abdomen (caused by hydronephrosis) Failure to thrive High blood pressure (hypertension; caused by kidney damage) Nausea and vomiting Protein in the urine (proteinuria)
i don't have any of these, plus the condition seems to be most common in young children. ??
This is not necessarily a problem. If you're holding too much fluid in the tissues, diuresis is good...it means the kidneys are doing their job.
Cobweb is right, some diet changes will affect the amount of fluid the kidneys filter from the blood.
I don't think the extra urine has anything to do with the bladder. I think it's due to something with the kidneys.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
carol -
interesting. that makes sense to me. but what is also notable is that the diuresis occurs along with typical IC symptoms - especially urethral pain/burning (and no, i don't have a UTI).
what could cause a buildup of fluid in the tissues? that sounds worrisome to me.
i'm pretty sure that peeing as much and as often as i do is not at all normal.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by heiwalove: what could cause a buildup of fluid in the tissues?
The cells hold onto more fluid when there is a problem with mineral levels, I think maybe the "sodium pump."
Marnie has posted about this before, how Lyme causes an imbalance that disrupts the cellular metabolism.
Heh, I can't articulate properly this morning. But I remember reading what Marnie wrote before, and thinking that may be why I have edema of the lower extremities.
I haven't quite figured out how to fix it.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
THis is strictly my belief re myself but I am sharing my own experience-
I believe for me my IC was caused- and my kidney infection- by Bartonella-
When I got Lyme I got incontinence -completely numb bladder- at age of 28 but that went away early on-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
nope, i'm not diabetic (i also don't have the usual concomitant symptom of excessive thirst). the diet was her suggestion, as it is to most or all of her lyme patients.
the mineral thing makes sense, carol. hmmm. i'll ask my LLMD about that the next time i see her.
posted
The only doc who was able to properly diagnose my problems was a uro gynecologist specialist.
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
yes--refluxing ureter (that is not surgically caused)is childhood problem for the most part. It can damage the kidney in young kids so it is a real serious issue. It is possible to miss this diagnosis though--- I know some young adults with it. I wasnt sure of your age. I know many children you have not had ANY of those symptoms listed. many didnt know they had refluxing ureters until it showed up otherwise.
But it looks like the others have pointed you in a more realistic direction---you are prolly having some diuresis or however you spell that.
I wouldnt go to a Urologist just yet without insurance. If this continues for weeks on end maybe you should consider going to one.
My bet is it will calm down, and you will feel much relief.
sorry if my post disturbed you. We reflect our own experiences, ya know? m
Posts: 1950 | From New Mexico | Registered: Sep 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Ive had something very similar too this, it was very scary, i would pee and then 3 min later pee again and it was A lot and clear like water.
I think it might have something to do with the ADH hormone(i think that is the one) i know mine is very low. There is something called diabetes insipitus. which doesnt involve blood sugar.
Im not sure what helped mine,
I still have ic and all the fun stuff that goes with it. I think its one of the worst diseases known and researchers dont seem to care.
Oh, also eating too much protein can make you pee more.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Bartonella contracted as a child got my bladder problems off to a good start.
Here are a list of interrelated things that work for me:
Take a little extra salt when my adrenals get overloaded. (Low cortisol makes you dump salt and pee alot. I know they are when I get extra weak and tired, and my eyes get scratchy.)
I take low dose cortisol supplements, and this makes me ned to pee less, and dump salt less.
Don't eat dairy products. (Don't know why this helps.)
Take testosterone cream and DHEA cream. Both contribute to better elasticity and muscle tone.
Take ibuprophen. It reduces the inflammation and irritation.
Get rid of candida. Candida flair ups make it worse for me. I eat loads of garlic for this.
Rub a small amount of Venex ointment over the bladder area. It seems to reduce the inflammation, and I'm hoping also to kill some of the organisms. It's been a big help lately, since I've started the bee program.
I think Andrographis really helped reduce this problem for me too. I'd like to hear from people who took abx, whick ones helped their IC.
I've gone from peeing every twenty minutes to only about once an hour or two, and I only wish I was wearing depends about once a week, or when the pollens are out.
Good luck Heather.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i actually looked into diabetes insipidus when this first started happening, though i never got tested for it.
since it doesn't happen all the time, and my kidneys DO usually have the ability to concentrate urine, i decided i probably didn't have it.. although it makes sense that my ADH could still be low. i think there is something called partial diabetes insipidus, as well.
bejoy, i wonder if cortisol levels contribute to ADH hormone levels at all? how do you eat the extra salt? by itself, or in water?
i'll definitely ask my LLMD about cortisol and ADH levels.
posted
Citric Acid (in alot of things, even "natural" foods/supplements) will set my bladder on "fire" Read labels
Posts: 315 | From USA | Registered: May 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
also, i wonder if lyme can cause diabetes insipidus??
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I think lyme can cause anything.
It can get inside any and all of our organs and make them go haywire.
I haven't heard much if anything about diabetes on this forum, though, so I don't imagine it's common.
I tried to eat extra salt on my food and couldn't get enough, so I ordered salt tablets, and I take them with extra minerals so my electrolytes stay balanced.
It's not good for everybody, but I sure needed it.
I don't know about ADH levels specifically. There is a whole chain of adrenal hormones that cascade and turn into other hormones.
I don't have the whole progression in my head.
You might want to look up www.adrenalfatigue.com and Dr. Wilson's stuff to see more about adrenal symptoms and treatments, if you think hormones might be involved.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
bringing this up again in case anyone has any more ideas. this symptom has really been bothering me lately, and the more i research, the more it seems in line with some form of diabetes insipidus ('water' diabetes, not the much more common sugar diabetes; they are two totally different conditions).
this symptom seems to be pretty rare in lymies, but i'm quite sure it's caused by lyme & co or maybe heavy metals.. up for any thoughts.
posted
I'm not sure what burns down there, but something does. Like you, my urine is often very light in color - almost clear - and my symptoms usually follow a meal - mostly urgency and burning.
It's probably IC, but there is no way I'm going to go to any doctor other than an LLMD anymore, unless my heart stops or my kidneys fall out. I seem to have trouble with salt, too, now.
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