Bladder issues (Interstitial Cystitis - IC) from Lyme or Bartonella?

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RainBaby
Regular Member


Date Joined Feb 2009
Total Posts : 41
   Posted 3/1/2009 6:07 PM (GMT -6)   
I have Lyme and Bartonella, which I got in May 08. I took doxy until October, when my doctors stopped giving me abx. Then I switched to the Buhner herbs.

I've been having what I think is interstitial cystitis (bladder inflammation) since last October, when I switched from doxy to Buhner herbs. I have since discontinued the Buhner herbs and started on Biaxin, plaquenil (both a month ago), and zithromax (one week ago), but the bladder symptoms continue:

-frequent need to urinate, even if there's only a small amount
-sudden and definite need to go, even with only a small amount of urine present
-takes a while to start urinating - maybe 30seconds to a minute, have to concentrate to start urinating
-hard to urinate completely - still feel like I need to go afterwards, or else feel like I have to push to get it out

I don't have a bladder infection (was tested), nor have I had bladder infections before. This seems to me to be Lyme- or Bartonella-related.I read online that Bartonella can cause interstitial cystitis.

Have any of you had bladder issues with Lyme or Bartonella, and did they resolve with treatment? Any suggestions to help with bladder issues?

hezzer926
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 3/1/2009 9:21 PM (GMT -6)   
I had bladder issues in the beginning... I believe its bartonella.. it resolved with treatment.. one of the only things that has so far!

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 3/2/2009 1:57 AM (GMT -6)   
Dietary adjustments may help. Refer to http://www.ic-network.com/diet/dietcheatsheet.html for a chart listing foods that are ok/not ok for people with IC, and you may find eating more of the ok foods and less of the not ok foods helpful for your symptoms.
I'm also having bladder symptoms...especially pain, usually after urinating. Also have the urgency and frequency. I'm on abx, so doubt it's infection...probably due to herxing in my case.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).


Girly
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/23/2009 12:12 PM (GMT -6)   
I as well have interstitial cystitis i find that it comes and goes depending on how i eat. I drink marshmello tea which actually helps the bladder lining. I'm seeing a doctor out in washington DC who thinks that my cys*** may be healed once the bartonella gets under controlled or cured. I havent heard anyone mention that they been cured of this yet. I just started the meds and im very curious on what these die offs are and how im going to feel.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/23/2009 12:34 PM (GMT -6)   
After treating lyme for 2 years and having bladder issues it wasn't until I started treating for Bartonella(which I test negative for) that those issues cleared up. I have been on Minocyclineand rifampin since September and those urges to go have stopped. Hope they stay away. Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


Minx
Regular Member


Date Joined Aug 2008
Total Posts : 62
   Posted 3/23/2009 1:17 PM (GMT -6)   
I also have IC. I started with a NP in D.C. but now I switched to a Lyme doc. He mentioned he thinks IC could be related to other bacterial infections. I cannot remember them all but I think he mentioned Mycoplasma pneumoniae and for sure he said Chlamydia pneumoniae. I tested positive for Mycoplasma but am waiting to have the test done for Chlamydia pneumoniae. Has anyone here been tested for these as well? For bladder issues for me, as Razzle mentioned, diet is the key to decrease bladder symptoms.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 3/24/2009 8:29 AM (GMT -6)   
I also tested positive for micoplasma pneumonaie but I never knew what the symptoms were. Does anyone?
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 3/24/2009 7:09 PM (GMT -6)   
i get it now and then although mine might be more yeast related.

I know you won't like this but drink a lot of water. It actually helps alleviate it.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 3/25/2009 7:05 PM (GMT -6)   
Yes - count me in here too;
it got better some. Occasional usage of early goldenrod (Solidago gigantea) and horse tail tea gave me some relief.
I ve heard form a friend that pelvic floor gymnastics do wonders for her. I think I will also check this out.

Razzle - thanks so much for the food list!!

mich2604
Regular Member


Date Joined Jul 2006
Total Posts : 319
   Posted 3/26/2009 10:53 PM (GMT -6)   
Count me in for this too.

I use the IC diet....and also take prelief before anything I think might case me an IC flareup.

I have also heard that bartonella or CPN can be the cause to IC. I am consulting with a practitioner in DC too that feels that the bug Fry Labs is finding is the cause to IC.... she prescribed zmax/plaquenil.


Some of my bladder symptoms got better when I went to physical therapy for pelvic floor dysfunction....so you may also want to look into that as well because PFD can cause bladder symptoms.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/27/2009 8:38 AM (GMT -6)   
I have exactly what you describe and it was made a whole lot worse when I tried to take Buhner's herbs especially andrographis. It got so bad I was in constant abdominal pain and went to the doctor to be tested for a bladder infection which I did not have. It went away when I started Ketek but slowly started to come back when I quit abx again going on the Zhang protocol for lyme. His herbs did not worsen it like the andrographis did - they just had no defense against it coming back but I was not using anything for bartonealla which was undiagnosed at that time. I went to a LLMD the first of Feb this year and was diagnosed with bartonella which can cause this. I took levaquin for a month and it was gone the first week. Then I quit abx again last week because of side effects and of course it is back. I start a new regimen today. So I am pretty sure it is bart related.
I tested negative for bart but the LLMD told me there are 30 strains and the labs only test for 3. I thought I never had the characteristic rashes either until I went online and found good pictures of papules which on my body look like little blood blisters. They were so small I never noticed them.
I hope I don't have any other tick diseases.

mich2604
Regular Member


Date Joined Jul 2006
Total Posts : 319
   Posted 3/27/2009 2:03 PM (GMT -6)   
nefferdun- interesting about Ketek....I was able to ask Dr B about IC at one of his conferences and he said Ketek works for the bladder.....has something to do with the acidic environment in the bladder and how the antibiotic works.


What is your new protocol? Levaquin helped me too....but caused me fungal issues.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/27/2009 4:02 PM (GMT -6)   
I didn't know that about Ketek. I think it also helps some with bartonella. I had to quit it when I got headaches.
I have a lot of yeast so I started fluconazole today which I take for a month. I think the yeast makes the urethra/bladder irritation much worse. I also was given Biaxin and Rifampin which I haven't started yet.
I was told the fluconazole also helps some with killing cysts. When I am done with that I start plaqenil for the cysts. He said the biaxn and rifampin kills bart but will also work on the lyme. I had major improvement with Levaquin as well as Ketek. Too bad about the side effects.

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 3/31/2009 12:20 PM (GMT -6)   
nefferdun, do you have the link for the pictures of the bart lesions?  I've only seen the stretchmark lesions.
Thanks, KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


Bellyboop
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 4/1/2009 8:10 PM (GMT -6)   
Hi all I haven't really posted on this sight -- but I'm wondering if any could offer any help. I have Lyme and now I have bladder issues. I have tested positive for blood in urine but not for infection and now I feel discomfort when I go. My LLMD doesn't think it's lyme related, but after doing some searching it seems that many Lyme patients have bladder problems. Has anyone tested positive for trace blood in urine? Could inflamation cause this? Could this be a lyme thing? I am seeing a urologist who wants to do a scope and I really don't want to have it done. I just am trying to figure it all out. Thanks.

Minx
Regular Member


Date Joined Aug 2008
Total Posts : 62
   Posted 4/2/2009 1:46 PM (GMT -6)   
Bellyboop,

I have tested positive with trace amounts of blood in the urine without infection before. Doc said it was normal.

This started for me two years ago and the first urologist I saw recommended a cysto and I ran for my life! I knew to run because of all the researching I did on the web. Most of the experts (in Interstitial cystitis) I found said no to cystoscopy unless the patient said they wanted it to try to get more of a definitive diagnosis. Even with a cysto, you are not guaranteed a 100% accurate diagnosis.

I got a second opinion (from a wonderful urologist) and she said cysto was not needed. She did a urine cytology to check for cancerous cells which was negative and I had a negative ultrasound. I finally got on track with treating tick borne diseases and I am doing better so far. IMO bladder problems are somehow related to tick borne diseases.

My current LLMD says after Lyme and co-infections are treated the bladder issues should be resolved.

Hope this helps. A good, low acidic diet is key to feeling better through treatment.

Minx

Bellyboop
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 4/2/2009 1:53 PM (GMT -6)   
Thank you for your info.  Can I ask you where you live?  I am trying to find good doctors and I just feel like I am being sent for test after test and no one is connecting the dots.  I live in NY.  On Long island.  My urologist said he hasn't heard of Lyme affecting the bladder -- so right there I was suspicious.
And them my LLMD said he hadn't heard of blood in the urnine being a lyme thing as well.  But a few other lymies I spoke to also tested positive.  I'm just soooo confused lately.  Thanks for the help!

runningiri
Regular Member


Date Joined Jan 2008
Total Posts : 373
   Posted 4/2/2009 2:00 PM (GMT -6)   
Please don't get a cysto - it will most likely make your condition much worse. Lyme and coinfections can most definitely cause bladder issues. I am one that has that as a symptom and I know of many others.

Runningirl

Bellyboop
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 4/2/2009 2:07 PM (GMT -6)   
I am definitely going to do more research before my next appt. I am sooo frustrated. I just don't feel confident in anyone.
I really appreciate your feed back. It is always good to feel like you are not alone.

Minx
Regular Member


Date Joined Aug 2008
Total Posts : 62
   Posted 4/2/2009 3:15 PM (GMT -6)   
Bellyboop-

I live in Maryland and my urologist is in Rockville, which of course if too far for you. She is not one of the "experts" in tick borne disease bladder issues. She was just honest, up to date and treated me like she would want to be treated herself.

I am giving you a link to the interstitial cystitis association. I am not saying you have this condition, but it may help you in researching since this is where I got a lot of my info from.

I hear Dr. M in L.I. is good, although he may believe in doing cysto's. You should check that out first. I attended a lecture given by Dr. E. on this list and he said definitely no to cysto but I think he is in North Carolina.

You are on the right track by questioning things that don't sound right to you. I think much of the info you can research will help you gain confidence in this journey to health.

Minx

Minx
Regular Member


Date Joined Aug 2008
Total Posts : 62
   Posted 4/2/2009 3:19 PM (GMT -6)   
http://www.ichelp.com/PatientInformation/ICQA/MeetourPanelofPhysicians/tabid/95/Default.aspx

Oops. I always do this. Lyme brain!

Bellyboop
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 4/2/2009 3:27 PM (GMT -6)   
Who is Dr. M.  Are you not allowed to give out full names?  I will check the link.  thank you so much  for reaching out.  It means a lot.

jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 4/2/2009 5:02 PM (GMT -6)   
hello everyone i have been having bladder issues my self....i also got tested for hpv and going to have a small surgary tomorrow to have a cone biopsy....but i have been having adominal pain for a few months now and just fig it was my period and my sister triggering me off each month cause she gets her period b4 me.....but now that i have read all your replys on bladder problems with lyme now i am wondering if thats whats wrong with me. i go see my llymd next week so i will have to tell him....i have been off my meds for a month now without him being aware of this....my syptoms are as follow: adominal pain, going to the bathroom frequently, have the urge to go all the time....
 
thank you all....i am sure i will be on this weekend sonce i need rest after my biopsy...
 
jennie smurf
"I will not let Lyme controll my life i will controll my own life"
lyme since June 08
meds-zithromax 500mg one a day/ 1  month // Plaquenil 200mg twice a day/ 1 month
starting 10/3 doxy100mg // omnicef 300mg
 
ADHD/anxiety/depression// celexa 20mg


jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 4/2/2009 5:03 PM (GMT -6)   
o one more thing when i lean over or have my lab top restng on my belly my adominal area hurts and cramps.....
"I will not let Lyme controll my life i will controll my own life"
lyme since June 08
meds-zithromax 500mg one a day/ 1  month // Plaquenil 200mg twice a day/ 1 month
starting 10/3 doxy100mg // omnicef 300mg
 
ADHD/anxiety/depression// celexa 20mg


mich2604
Regular Member


Date Joined Jul 2006
Total Posts : 319
   Posted 4/2/2009 5:05 PM (GMT -6)   
I think we could mention IC dr names on here as they dont treat lyme....or am I wrong.

Dr M is one of the Pioneers of IC....I think last I heard him speak via the internet he was using Lidocaine instilled into the bladder as a diagnosis tool. I would not get a cysto or hydro at all. I did not see this dr. I was tricked into getting one so the uro would fill out disability paperwork because it would show proof that I had it......later I was told that some healthy baldders look inflamed when they are inflated like they are in a hydro. There is also a potassium sensitivity test you can have done...which instills potassium to see if you feel more pain.

I have been told by a few LLMD that Babesia can infect the bladder and cause trace blood in the urine.
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