I sm scheduled for a urodynamics test with urologist next week.
could it be from lyme or co-infections? anyone have this as a symptom?
doc talking about my doing self-catherization.
Anyone with this issue?
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Catgirl
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I would say yes it can be from lyme and co infections. I've had bladder issues ever since I started abx. Yeast plays a factor in there too. Endocrine system, hormones etc. Lyme affects it all. Also parasites.
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including retention? so what's to be done about it?
Im being treated according to my lyme doc
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poppy
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Lyme does this to me. These bacteria love the bladder for some reason. Far as I can tell, just lyme treatment will help the problem.
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I have the opposite problem, for years way too much urinating. Recently got my vasopressin levels tested, (adh or anti-diuretic hormone) and it was way too low. Very small supplementation of desmopressin has resolved this enough that I can sleep thru the night. Now I have better blood volume, more fluid retention so I gained back some of my lost weight.
So I would wonder if Lyme has screwed up your pituitary thingie enough to throw this hormone off balance, in your case too much of it? It's a simple blood test to find out. I am not sure what the treatment for that might be but if I were you I'd be wanting to look for non-invasive treatments!
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I had blood works last year by an endocronologist. It was negative.
Whatever blood tests the doc took.
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Rumigirl
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quote:Originally posted by Talktel: poppy
what are you doing for the re tention? Is it severe?
My urologist is doing a test, but they are talking about self-catherization, which turns my stomach. I don't think that's a quality of life.
So what are you doing about it? How severe is it and any treatment for it?
I think its a neurogenic bladder.
Yup to the urogenic bladder as a likely cause IMO. If so, if it hasn't been going on too long, Lyme & co-infection treatment should reverse it.
BUT another possibility is from a med you may be on? Don't know what, if any, meds you are on. Neurontin/gabapentin, for instance, can cause this, as can other meds.
Do you have a top-notch LLMD, I hope? If not, you probably need to find one. You might need a LL neurologist, too, all depending on what your urologist finds with the testing.
There are urologists who are basically neuro-urologists, even if there isn't a term like that per se.
I have had, and still have, major urological issues from Lyme & company, so . . .
But if there is a neurological component, you need to get the best treatment for neurological Lyme you can get ASAP, usually that is IV.
Keep us posted, and good luck with your tests and consult.
PS I don't know where in NY you are, but Columbia Presbyterian has urologists who deal a lot with neurogenic bladder. Any excellent urologist should, but some may not. be so good in that dept.
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Years ago I had to self catherize for many months. It's painless, easy to do once you get the knack.
I recently had exam by a top urologist. He said my bladder was very scarred from many infections. In spite of daily IVs and Zithromax, I still have difficulty. The thought is that the antibiotics will eventually beat it....although all are mystified.
I plan to ask for urine culture, not simple test, to find out what antibiotic will kill it.
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who in Columbia is good with neurourolgical testing. maybe I need neuro testing for all neuro symptms im having, like tingling, brsin fog and twitching tremors amd dizziness, head pressure etc. just to make sure nothing else going on?
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LisaK
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posted
I had this. I had to strain sometimes really pushing to get my urine out and it never fully emptied from my bladder.
It was all tick disease for me. it went all away with treatment. I can't say which tx did it, but it went away within several months.
I had gastroparisis that would come and go, so I am pretty sure it was all related to that. I think? I am not a dr.
but I never had this addressed by a dr. they all just ignored me when I told them this sx.
the worst it was for me was not peeing for about 2 days. I am sure if it got to the point of many days I would have gotten more of a response from someone.
I hope you find some answers for yourself.
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what treatment were you on when it got better?
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Keebler
Honored Contributor (25K+ posts)
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posted
- Have you consulted a naturopathic doctor? A ND who is also an acupuncturist might be even better.
They could best determine if there is a gentle yet decisive approach tailored specific to you. They'd know much more beyond detail below but here's a glimmer of hope, I think:
The ONE EARTH HERBAL SOURCEBOOK (Tillotson, et al) -
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LisaK
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Talktel, I first did abx for a few months and got too sick for them, then switched to herbals. they were in tense. like Cowden, but more intense.
plus lots of chlorella and cilantro.
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posted
I just restarted tetracyclin and liposomal art and alinia, and it got better. I'm supposed to pulse four days on and three days off.
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Rumigirl
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quote:Originally posted by Talktel: who in Columbia is good with neurourolgical testing. maybe I need neuro testing for all neuro symptms im having, like tingling, brsin fog and twitching tremors amd dizziness, head pressure etc. just to make sure nothing else going on?
You are talking about 2 possiblilities for a neuro here: a regular neuro (hopefully LL!), and a urologist who deals a lot with neurologenic bladder.
For the neuro-urologist, go on the website for Columbia Prebyterian and check out who seems to best fit.
For a regular neuro----most are NOT good with Lyme. There is one in CT; PM me if you want the info. That doctor wouldn't be your LLMD, but could help with the neurological issues around Lyme.
For those who got better with the urological stuff with treatment, you're lucky! For those of us who have had it so long, there is a lot of permanent damage already, sadly.
If you are in the former category, which sounds likely----yeah!
BTW, if you do need IV, which I don't know of course, I recommend switching to someone who does do it. Unless you are really getting better without it. There are some who do in the area.
I just looked at your quote above again---ALL of the symptoms can be caused by Lyme & co. Most of the neurological diseases are actually caused by Lyme IMO. But I'm not a doctor, and it
doesn't hurt to get checked out. With the caveat that most neuro's will pooh pooh Lyme and diagnose some neurological disease! Sigh.
Looking at the symptoms, if I were you, I'd go for IV, esp the twitching tremors.
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TF
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posted
Here is a quote by a lyme doctor saying that this can be caused by lyme disease:
"LD can cause an interstitial cystitis leading to bladder pain relieved by urination. A neurogenic bladder can develop with either hesitancy, frequency, loss of bladder awareness, urinary retention, incontinence or the symptoms of UTI (urinary tract infection)."
from "When to Suspect Lyme Disease" by Dr. John Bleiweiss
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