posted
I've been having urethral pain off and on for the last 8 months.
Symptoms started after nebulized Glutathione treatments in the fall and flared with dietary changes (the slightest deviance from my very strict diet).
Seemed U.T.I. or yeast related at first but then my first UA came back normal.
Have had flares since that time w/more UA tests. One UA showed E. Coli. Another UA that looked normal was sent out for culture and grew Strep.
My pain has been specifically in the urethra rather than the bladder. NO burning upon urination. NO frequency. Just a constant pinching pain that varies in intensity. At times the pain is so bad I feel crazy and I want to die.
My urologist had me on Cipro for 5 days, then Doxy for 7 days with the latter infection. Because I was tolerating the medication, my Lyme specialist decided to continue the Doxy for a longer course and at a higher dose that is more bactericidal and indicated for my Lyme infection.
It has been a month and I still have urethral pain. I've also been on Amitriptyline though I cut my dose in half because it made me extremely tired during the day and I was seeing stars every time I stood up.
Have learned a lot from my latest round of blood work. My Fry Lab report showed a small-ish load of Bartonella and FL193 (new protozoa discovered by Dr. Steven Fry). Other blood work also revealed I am homozygous 4-3-53 (termed the dreaded genotype by some) meaning I have trouble detoxing.
My Lyme specialist has added Cholestyramine and Charcoal to my existing protocal to bind/mop up toxins and help me detox.
For the Urethral pain I have tried U.T. Vibrance by Vibrant Health and extra D-Mannose (typically used for U.T.I.s but I think there is something in the U.T. that helps with inflammation so, it helps temporarily). Occasionally, Alka Seltzer Gold takes the edge off by changing my p.h.. Have also used a hot water bottle over the area most nights. Last night was the first I have tried a diluted tea tree solution which felt better for a very short time.
Have searched "urethral pain" in the forums yet most posts are dated 2007-2009. Anyone have similar experiences or suggestions to ease pain?
It is maddening and one more layer in the daily battle of Lyme. Hard to imagine it will dissipate and not permanently add to the breakdown of my body.
Posts: 7 | From Portland, Or | Registered: Apr 2008
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Wow does this sound familiar. As soon as I started treating with abx, that was when I started having bladder, urinary and urethra problems.
I found that shortly after going on abx that I unconsciously stopped doing things I normally did pre lyme treatment. I became lazy about cleaning all the food off of my teeth right after eating. Most people can feel when they have food stuck in their teeth. I couldn't anymore, so my teeth started getting lots of plaque.
Then, one night I got up in the middle of the night and accidentally wiped the wrong way. I have never done this in my whole life (middle aged), but once I got on abx, I found myself doing stupid things like this (but that was the only time I wiped the wrong way). It was like my brain wasn't working at all.
There simply was no connection or feeling from my mouth to my brain. And all of my common sense regarding wiping went out the window. I know better than this, but my brain simply stopped making the connections it had during my whole life (prior to lyme treatment).
After about two weeks on abx for lyme, I realized I might have a UTI. I went to see my PCP, got cipro (which seemed to really help). But at the end of my course, I noticed that I wasn't supposed to take it within 6 hours before or 2 hours after any mineral or vitamin supplements.
Again my brain failed me. I failed to read the instructions. Pre lyme treatment, I read absolutely everything. So I called my PCP and she told me I couldn't have any more cipro, but gave me 5 days of bactrim. She thought I was nuts anyway for seeing a lyme doc and wasn't very understanding.
My UTI symptoms were still present at the end of that treatment, but not quite as bad as when the whole thing started. A week later, I called her again and told her it didn't go away.
She took another culture (forgot to mention this) and it came back the same as the previous one (no bacteria). So she sent me to get an ultrasound of my bladder.
I explained to her, and the people at the hospital who scanned my bladder, about all of my UTI symptoms, one of which was that my urethra felt like it had a clothes pin on it, and that I was in agony. They decided I had dysuria and gave me another round of bactrim.
So I have been dealing primarily with bladder issues (frequent urination all night) and the feeling every now and then that my UTI was back for about a year now.
I had my OB check my urine too, and explained the whole whole thing to her. She sent my urine out to be examined, and nothing.
I eventually got tired of this and moved on to another lyme specialist (well known) who felt that my UTI was never completely taken care of, and that was why I had the recurring issues.
Then a couple of weeks ago I tried humaworm. A week later I got a UTI (burning, freq urination, pain), and the clothes pin pressure on my urethra. So I called and got UTI meds. I took them for 5 days and still felt like they weren't hitting it. So I thought about my diet.
Every day I have something in the morning that naturally has calcium, magnesium and zinc, and iron in it (quinoa porridge). So I thought that it must have been messing with my meds, so I stopped eating it for breakfast and everything started to feel better. I took 5 more days of meds, and am happy to say that it is gone (fingers crossed).
I feel for you twist. My gut says that you still have some bacteria floating around there. I would try and get some meds for it. I'm surprised they only gave you one round of cipro. My pcp (last year) gave them to me because a culture would take 3 days to come back and she could tell I was in agony.
I can tell you that I tried uva ursi tea, lemon water, coconut oil, coconut milk, cranberry juice (helped for a little while) and can't remember what else, but maybe they all helped because the pinched urethra feeling has been gone for about a year now. But then again, I got abx back then and did everything else after that.
My other thought is if a round of abx doesn't work, and even if it does, start looking at parasites. For some reason or other, the lyme docs are missing this.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Twist, I forgot to mention, for temporary relief of the pain, try unsweetened cranberry juice and double up on your probiotics. That will hold you until you see your doc. Or, if alka seltzer gold changed your ph to a more alkaline one, you could try that or maybe just some lemon water (temporary).
Or just call your doc and tell them your in agony and ask if they can call in a script for you.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Has anyone mentioned IC or Interstitial cystitis? This article mentions some of the symptoms, but not all. I have been diagnosed with IC and chronic pelvic pain. Very debilitating and for me, extremely painful. It feels, to me, like constant labor pains.
This may not have anything to do with what you have, just throwing it out. PM me if you have further questions.
posted
I have had the same problem you describe. It keeps me up at night. It starts mysteriously, continues for one to three weeks. Local heat helps temporarily. Urine cultures are negative each time. The only preventative I have found is taking Estrogen replacement (Estrace 1 mg) a few times a week seems to make a difference but there is no guarantee. I wish I could be more helpful.
Posts: 156 | From MA | Registered: Jul 2003
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
The womenshealth link is a good one. Thanks Dogsandcats. :)
I am on heavy anti yeast stuff and a very strict diet. Like Twist, I have gotten some glut treatments (glutathione pushes and IV glut). I noticed my last few treatments, though, they brought on herxes and made me depressed.
However, everytime I get one, it cleans out my bladder. Twist, did you notice this too?
The first time I had it done, I went from urinating 5-7x a night to 1 (that night). I recently got another treatment and am back down to two times a night (instead of the 5 or 7 I was doing).
My lyme specialist told me that the bladder has very thin walls and that bacteria loves to get into the cracks and feed on all the nutrients it can find. So the fact that I feel better (at least bladder wise) makes me think he's right.
But your link is interesting and maybe there is some of that going on too.
I think that my wiping incorrectly gave me my initial UTI, even though they couldn't find any bacteria. Also, by the time they took a urine culture, I had already been on abx, so it might have botched the test.
And my frequency seems to come at night (bedtime) or if I'm on a plane. When I'm on a plane my babs acts up (which is also a parasite), and also frequent urination. So that leads me to believe it may be parasite related.
I don't know Dogs. You may be right about IC. I'm tossing around parasites. I am also concerned about the Fry bug (need to get tested). I think that glut treatments can make the fry bug worse. I am also heterozygous on the MTHFR gene.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
when the culture is done and the lab returns it, they tell you right on the report what abx work on the strain of bacteria found. your urologist or whatever dr. you are seeing should have you on that medicine until the bacteria is gone. cipro and bactrim for 5 days is not enough for a complicated uti. if you have any nausea, or back pain, or chills or fever it means that it has gotten into the kidneys and this requires longer amounts of treatment..21 days about.
Posts: 38 | From USA | Registered: Jun 2012
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