Does anyone have any bladder or kidney problems with their lyme?
Some background info..my bloodwork is postive for bartonella but negative for lyme...my LLMD has been treating me for 6 weeks (last pills were 2 days ago) with 400mg doxy per day and in the last 2 weeks I've noticed quite a difference in my muscle/joint pain, neurological and cardiac symptoms I'm going to undergo testing through Igenx in the next week for co-infections and Lyme.
Over the last 3 months in addition to the above symptoms I've had what I thought were UTI infections but I'm not sure anymore. I started having lyme symptoms in December and all urinalysis till February were normal. In February I had bladder/abdominal pain & slight burning & difficulty when urinating. My urinalysis showed bacteria, high leukocytes and protein levels. I was placed on cipro for 3 days and felt good. One month later the same thing happend again and I took cipro for 3 more days. These past few days I have had the same symptoms of abdominal/bladder pressure, urge to urinate and pain on the thigh portion of my leg radiating up my left side and to the underarm area. My doctor has scheduled me for an abdominal/renal ultrasound, a clean catch urine test and I see a urologist in 3 weeks.
I'm worried about possible kidney problems because the last 3 urine tests I've had over the last 2 months have all shown high leukocyte levels and protein levels...anyone else experience anything similar?
Thanks in advance!
Posts: 13 | From Toronto | Registered: May 2007
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posted
Oh yes. The spirochetes LOVE the bladder!! Many of us were dxd with Interstitial Cystitis. My IC is about 90% better since going thru treatment for lyme disease.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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cantgiveupyet
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You sound like me.
I too have IC like lymetoo. the majority of my symptoms are in my pelvic area now.
I have high WBC and leukocyte(spelling?) levels too, but no bacteria has grown out. Depending on what dr you see this is a sign your body is fighting infection.
Do you know what bacteria showed on the culture?
-------------------- "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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The first time I was put on cipro in February it was because I had elevated levels of escherichia coli bacteria. No bacteria has been found in the subsequent tests but I still have the UTI type symptoms and high protein & leukocyte levels. It's not painful but definately uncomfortable. Do you find anything helps the symptoms? I'm worried this ongoing problem might be a sign of kidney issues.
Posts: 13 | From Toronto | Registered: May 2007
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I'd be surprised if you aren't experiencing Interstitial Cystitis. Your symptoms mimic mine when they started. I thought I was having lots of UTI's but then the urologist could no longer find any bacteria. I have blood in my urine everytime I give a urine sample.
I have been treated in outpatient procedures and in the doctor's office with instillations of the bladder with meds to help stop the inflammation. Inflammation of the bladder is basically what IC is. I have had a few flares but I take a smooth muscle relaxer for them and occasionally have to take something stronger.
There are dozens of women here with IC. We'll be here for you.
Welcome, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Andie333
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Prior to my Lyme diagnosis, I was also sent to a urologist. Initial testing seemed to indicate I might have bladder cancer, but subsequent tests were negative.
Since being on abx, though, I've had no problems.
Hope you're able to get some help!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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cantgiveupyet
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I take neurontin for the pain and zanaflex to help with the tight muscles i have in the pelvis.
I found recently that some of my symptoms in my bladder are actually related to the muscles surrounding the bladder.
It does sound like you have IC now, possibly the original infection and the lyme damaged the bladder lining. and the fact that your cultures are negative.
I would go to the websites listed above, i post on the ic-netowork often and it is very helpful.
How many times are you urinating a day?
-------------------- "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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posted
Thanks for the support and the advice everyone just when my other symptoms were getting better this begins again
I will definately check out those websites on IC
to cantgiveupyet: I am urinating quite frequently but I think that is because the large amounts of water I am drinking in an attempt to flush & cleanse my system. I have noticed that sometimes my bladder never seems to "feel" empty even after I urinate. I've been drinking cranberry juice as well...I read on the IC sites this can irritate the bladder but I haven't noticed a change when I drink the juice. I see my LLMD next week again so I'll be sure to mention all this to him. My family doctor is the one whi has ordered the ultrasound & urologist appointment.
Posts: 13 | From Toronto | Registered: May 2007
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bejoy
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posted
For IC symptoms what works best for me is to stay alkaline.
Coffee and dairy products make it worse for me.
Water with lemon juice makes it better.
Muscle release in the soaz, lower pelvic area make it better, as does lymph drainage.
Testosterone and estrogen transdermal cream seem to reduce leakage.
I also get much relief from a homeopathic called cantharis.
I'm experimenting with the Sota mag pulser, and my symptoms are improving from that as well.
You're not alone with that one. It's definately on the tick born illness checklist.
Best wishes for your wellness.
bejoy
-------------------- 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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posted
Many thanks for the support and advice everyone Many of you mentioned IC and I'm curious to know whether anyone had had this happen...over the last week or so...actually this was happening even before my UTI type symptoms...my face, abdomen and fingers seem to be puffier/swollen...I also think I have begun losing weight again yet I sometimes have a diffult time buttoning my jeans because of the abdominal bloat...does this sound familar? On an unrelated note I've also noticed my hair has thinned quite a bit (espcailly at the front. crown area) since this whole ordeal began
Posts: 13 | From Toronto | Registered: May 2007
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heiwalove
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posted
yep, i had IC too. gets better with treatment.
CaliforniaLyme
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posted
I had IC gone with tx too!!!!!!!! But bladder & kidney problems are consistent with Bartonella!!!
-------------------- 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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CaliforniaLyme
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I had IC gone with tx too!!!!!!!! Kidney problems are consistent with Bartonella!!! It sequesters there- hence a risk for kidney transplant recipients!!!!!!!!!! *********************************** 1: Dardenne S, Coche E, Weynand B, Poncelet A, Zech F, De Meyer M.
High suspicion of bacillary angiomatosis in a kidney transplant recipient: a difficult way to diagnose--case report.
Transplant Proc. 2007 Jan-Feb;39(1):311-3. PMID: 17275532
2: Rheault MN, van Burik JA, Mauer M, Ingulli E, Ferrieri P, Jessurun J, Chavers BM. Related Articles, Links
Cat-scratch disease relapse in a kidney transplant recipient.
3: Schmid MC, Scheidegger F, Dehio M, Balmelle-Devaux N, Schulein R, Guye P, Chennakesava CS, Biedermann B, Dehio C. Related Articles, Links
A translocated bacterial protein protects vascular endothelial cells from apoptosis.
PLoS Pathog. 2006 Nov;2(11):e115. PMID: 17121462
4: Mediannikov OIu, Melikian AL. Related Articles, Links
A case of cat scratch disease in a patient with diabetes mellitus and chronic renal failure
Klin Med (Mosk). 2006;84(7):61-3. Russian. PMID: 16924805
5: Saunders GK, Monroe WE. Related Articles, Links
Systemic granulomatous disease and sialometaplasia in a dog with Bartonella infection.
Vet Pathol. 2006 May;43(3):391-2. PMID: 16672593
6: Koehler JE, Duncan LM. Related Articles, Links
Case records of the Massachusetts General Hospital. Case 30-2005. A 56-year-old man with fever and axillary lymphadenopathy.
N Engl J Med. 2005 Sep 29;353(13):1387-94. No abstract available. PMID: 16192484
7: Patel UD, Hollander H, Saint S. Related Articles, Links
Clinical problem-solving. Index of suspicion. N Engl J Med. 2004 May 6;350(19):1990-5. No abstract available.
PMID: 15128900 [PubMed - indexed for MEDLINE]
8: Wilk I, Martirosian G. Related Articles, Links
Nanobacteria--microbiological characteristics
Postepy Hig Med Dosw (Online). 2004 Mar 3;58:60-4. Review. Polish. PMID: 15069381
9: Hopp L, Eppes SC. Related Articles, Links
Development of IgA nephritis following cat scratch disease in a 13-year-old boy.
Pediatr Nephrol. 2004 Jun;19(6):682-4. Epub 2004 Mar 11. PMID: 15015065
10: Karras A, Thervet E, Legendre C; Groupe Cooperatif de transplantation d'Ile de France.
Hemophagocytic syndrome in renal transplant recipients: report of 17 cases and review of literature.
Transplantation. 2004 Jan 27;77(2):238-43. Review. PMID: 14742988
11: Juskevicius R, Vnencak-Jones
Pathologic quiz case: a 17-year-old renal transplant patient with persistent fever, pancytopenia, and axillary lymphadenopathy. Bacillary angiomatosis of the lymph node in the renal transplant recipient.
-------------------- 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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cantgiveupyet
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fay- no i didnt have the swelling you describe with the IC. Have you had your kidney function tested?
I also read another post today that Bartonella can cause Endema(swelling).
California lyme and heiwalove- did you treat the IC with anything but abx?
Thanks for the article on Bart.
-------------------- "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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Thanks for the articles California Lyme, good information to know
cantgiveupyet: With regards to my kidney functioning...what kinds of tests would that involve? So far,I have done several urinalysis, a 24 urine test and have a renal/bladder ultrasound is scheduled for next Tuesday. I've also had extensive bloodwork done. Those are the only tests I've had relating to bladder type issues. Do you know of any other tests I should be requesting from my doctor?
Posts: 13 | From Toronto | Registered: May 2007
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bejoy
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posted
You might want to request a saliva test for hormone levels. Hair thinning is often due to various low hormone levels. Edema can sometimes be due to low cortisol.
-------------------- 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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kelmo
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Have you ever experienced urine retention? My daughter was heavy with bartonella, and sometimes it would take 45 minutes to void. She would be up all night trying to go.
She drinks nearly a gallon and a half of water a day. She had to give up cranberry juice due to yeast problems.
This got better with treatment, but reappears the week before her period.
posted
I wonder if taking more probiotics then you have been would help? Mepron made my bladder problems worse but you are not on Mepron. Once I came off Mepron things improved for my bladder.
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CaliforniaLyme
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I SELF treated the IC away!!! They gave me MONUROL and it comes in 3 packets- they told me to take one- I did- and symptoms went away for like 3 DAYS- they said- oh it didn't work it obviously isn't responsive to abx- I said WHAT IT DID WORK- for 3 DAYS! So... I took the other TWO packets, two days in a row even though that is considered an overdose- happy ending tra la la- it has been gone EVER SINCE!!!!!!!!!!!!!!! THANK GOD!!! It sucked!!!!!!!!!!!!!!!
-------------------- 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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CaliforniaLyme
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What is intersting personally to me about this thread is that my IC was the only symptom to DEVELOP in the last 6 years- AND I just had a dangerous very bad non-Lyme related KIDNEY inefction a couple of months ago- and I have presumptive BArt left- no Lyme really (I don't thinK!)- no Babs- no Ehr! All of what I have left is responsive to CIPRO which I can't take because I am breastfeeding!!! So in the last 6 years the only new symptom I got was IC which was gone within a couple weeks because I self-treated- and then I got this supposedly unrelated kidney infection wihch I attributed to my weak kidneys because I had a kidney ailemnt as a child- and actually a bladder surgery as well- but this thread is making me wonder because I DO have presumptive bartonella and within the last 6 years my only ILLNESSES have been this tiny remnant of chronicity of either residual Lyme or presumptive Bartonella- and IC- and this kidney thing... COINCIDENCE I am sure*)!*)!*!!!!!!!!!
(re bladder/kidneys I was born very premature very fat at 5 pounds but only 12 inches long and my urinary tract was not fully developed and the urine ran AROUND my kidneys instead of through them but they didn't figure thatout until I was 3 and very damaged- the uric acid ate through half one kidney and 1/3rd the other and finally I had an operation when I was 3 after being ill since birth- since we lived in INDIA my dumb PhD parents just kept thinking "It's the wtaer!" "It's the food." "It's malaria!" (which I also got- twice) So I was sick since I was born until age 3 with episodic high fevers & sickness which was finally correctly diagnosed as RENAL FAILURE!! I rememebr those early days actually, my ayah would wring out cold cloths on my body because I would be in pain and burning up- oh what a FUN life I have had*)!*)!*)! So we came back to states and I wenti nto the hospital for a couple of months had a few operations and was told that I have weak kidneys and to watch out!) (It has been fun actually*)!*!!
Also makes me wonder if this is why I was so good with agony when I had LYme so bad- because I was in such pain for so long as a child- so stoically-
ANYWAYZ, an intersting thread in light of my personal vulnerabilities which seem to overlap with the disease I have- perhaps why I got SO sick with this kidney infection after years of not having one!!!!!!!!!!! That was a few months ago and when I tried topost about it my post kept getting stuck- but I had a 104 fever for 3-4 days and had to go to the hospital (husband made me)
ANYWAYZ, happy Thursday everyone*!))!*)!
IC sucks!!! Glad mine is GONE*)!*)!*)!!
-------------------- 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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kelmo: I've never experienced urine retention...it usually takes 30-45 seonds sometimes for my urine flow to begin but once I'm going...I'm okay
Vanilla: I've been taking theralac probiotics since the beginning & following a fairly strict diet...I haven't noticed any yeast problems...could they be there without me having symptoms? any way i can check?
CaliforniaLyme: I'm so glad to hear your IC is gone! The previous two times my dr. thought I had a UTI I was put on cipro for 3 days....maybe I should ask to try monurol if this turns out to be a UTI again...although I don't think it is
Posts: 13 | From Toronto | Registered: May 2007
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cantgiveupyet
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Cipro seemed to help me a bit too with the bladder, but those were the days i was urinating all the time...so it was so difficult to guage anything. My LLMD said for me to take the 'lyme dosage" 1000mg extended release, and all heck broke loose, very bad yeast returned and i had to stop.
Mind you I barely weighed 90lbs at the time.
Fay- i think the ultra sound is a very good idea. There is also a blood kidney function test...one measure creantinine(spelling) and the other is GFR. Im sure your dr has probably thought of these tests and run them already, but thought i would mention it.
My bladder seems a bit better since starting the cats claw and physical therapy for my pelvic muscles. For the last few days im taking olive leaf again which previously iritated my bladder and now it seems to be ok with it.
IC does sux!!!!! but so does the vulvadynia and pelvic muscle stuff that i got with it.
-------------------- "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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i've had my creatinine and GFR measured and they came back normal...my bladder symptoms felt better on the cipro too but my muscle & joint pain would increase...I've lost about 10 pounds since this began and i'm done to 90 pounds as well so the facial swelling & fingers is quite noticable...my LLMD doesn't really mention or use herbal or other supplements other than multivitamins & fish oils so maybe I should look into some complemntary treatments like the catsclaw you mentioned
Posts: 13 | From Toronto | Registered: May 2007
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Geneal
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I've experienced difficulty with initiating and controlling the flow of urine,
However am now having "spasm" type feelings in my bladder.
This started when I began taking rifampin.
Called LLMD and he said this was a possible side-effect of rifampin...
This may go away during treatment.
Does anybody think this could be part of a bart herx instead?
I've also developed some strange muscle twitching...
My left ankle has been twitching all day.
Let's face it...I need a complete body make over starting with the top of my head,
where my hair is falling out, and ending with new toes as I now am having burning, painful toes on my right foot.
To bad they don't still have that SWAN show...
I have had protein and blood in my urine too..
This went away with babs treatment...don't know why, but it did.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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cantgiveupyet
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fay- i find it interesting that you lost weight with this as well. There are a few on the IC board who also lost weight, not all loose weight.
I tested negative for all coinfections, but i just wonder if there is something in common with those that have the bladder involvement and also lost weight.
Im glad your kidney tests came back ok.
I gained some weight so i am now 107, but i still look so frail, cant even shop for clothes..i wear sweats most days.
Geneal- It could be a bart herx, is it listed as a side affect of rifampin. I have a lyme friend who had excellent results on rifampin.
-------------------- "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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Vanilla
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I am no yeast expert (probably others here know more about yeast then I do) but I do know that it can effect the bladder and when I start getting yeast symptoms I take more then the label says. I take Metagenics dairy free probiotics which work better then others I have tried like Pearls which did nothing for me. Instead of taking 2 caps a day I will take 3 which my LLMD says to take 3 anyway. I also eat a tablespoon of good quality plain yougurt before bed which seems to make a big difference too.
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I know I'm joining in this conversation a bit late, but just saw and I completly relate.
I have had problems with getting 'bladder infections' for some years now and the Dr.'s too gave me Cipro. Which never helped for long- the pain would always come back.
I haven't had a bad one sense I changed my diet- no sugars (not even fruits or honey) and no gluten or soy.
I also found that D-Mannose helps, which supports Uniary Track health (it can be found at any health food store).
I have never had my kidneys checked, but feel that I should. I pee about every hour or less. I do drink LOTS of water trying to keep things moving, but the pee urge is excessive. I'm up a couple times at night always, and feel my bladder is full- lots of pressure.
I can feel pain when I pee- but not often- comes sporatically- I feel it slicing down my uretha- ouch.
I haven't begun treatment for Lyme yet, but hope it takes this bladder situation away.
Any specific Kidney test to have, besides ultra sound?
I'm on the no sugar/yeast diet too and I think it has helped me enormously. I'm not too sure about all the kidney tests availible but I know a urinalysis (an instant & a 24 hour) to check protein, creatinine, BUN levels would be a good start as would a renal/abdominal ultrasound/MRI or CT scan.
I was also wondering whether my symptoms could possibly be a yeast infection..I've never had one before but I assume it would include burning and itching..which I don't have.
Posts: 13 | From Toronto | Registered: May 2007
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KauaiGoddess - I had a brain SPECT scan done by my LLMD...mine came out normal...my neurologist however said that SPECT scans are generally not very accurate & miss many things...he didn't elaborate and I didn't ask as I was on my way out of his office.
My SPECT scan was covered but I'm in Canada and our government healthcare covers it...I'm not sure if private insurance would cover the cost.
As far as the diffrence between CT and MRI I think MRI's tend to be used in looking for soft tissue anomaly & skeletal/brain images, while CT is more often used in looking for distortions or hard tissue anomaly in the chest, abdominal etc..regions.
Posts: 13 | From Toronto | Registered: May 2007
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posted
I get horrible bladder pain and burning on urination when I take rifampin. Could this be a bart herx most likely or med side effect?
It usually resolves on its own after a few days. I've herxed terribly on rifampin so have taken a couple of breaks.
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I'm going to undergo testing through Igenx in the next week for co-infections and Lyme. 
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