Relationship between CFS and UTI'S????

Discussion in 'Fibromyalgia Main Forum' started by MsE, Jun 21, 2010.

  1. MsE

    MsE New Member

    Have any of you had the symptoms of a full blown UTI that didn't show positive on a lab culture, but did show on the home UTI strip? Twice? Is this another nasty CFS thing? Please respond. A long session with Cipro (I'll never use THAT stuff again) didn't get rid of it except briefly. I would appreciate feedback. Thanks. MsE
  2. TigerLilea

    TigerLilea Active Member

    Yes, I was diagnosed with several UTIs that turned out not to be infections at all. I had Interstitial Cystitis which is inflammation of the bladder wall. The only way to diagnose this is to be put under and have your bladder scoped. Once the diagnoses is made, the bladder is filled with liquid until is bleeds. They do this twice (takes about 20 minutes) and then as it heals it forms scar tissue which acts as a barrier between the bladder wall and the urine.

    I had this done 10 years ago and now the only time I have problems with my bladder is if I have really spicy or acidic food. Also some brands of decaf coffee can also cause problems. At least now when I do have the odd bad day, it is very mild and clears up within a couple of days.
  3. MsE

    MsE New Member

    Thanks for the clue. So--it IS connected to CFS?
  4. TigerLilea

    TigerLilea Active Member

    IC is more common in women in their 40s and older, and is also more common in women with CFS. So for myself I don't know if it was my age or the CFS that was the trigger; maybe both? I do know how I got it though - having a bath with bath salts. It was the salts which irritated the lining of my bladder. My Urologist told me that women should never use bath salts or bubble bath when taking baths. I'm a shower person and the only reason I took a bath that night was that one of my sisters had given me bath salts for my birthday. I won't make that mistake again.
  5. MsE

    MsE New Member

    I had heard that baths could be a problem, but a nice hot bath is one of the few things that makes all my owies go away for a bit, including the IC or whatever it is. I seldom use bath salts or bubble bath, though. Sometimes, Epsom salts. But when this hit, I had been using the shower only for quite some time.

    I wonder why IC is more common in women with CFS? I understand about us older gals, but I don't understand the CFS connection.

    Thanks for writing.
  6. MsE

    MsE New Member

    Guess I'll have to see if I can convince my general practitioner to send me to a urologist for a test for IC. I've never heard of the treatment you received, but hey--if it works.....
  7. amomwithsickkids

    amomwithsickkids New Member

    I didn't realize that this was an actual treatment. I get a lot of UTIs most of which do show an organism, but every so often nothing shows up even though I have UTI symptoms.

    For the past several months, I have been taking a concentrated cranberry/pomegranate supplement that also contains lactobacillus (probiotic). This seems to be preventing the UTIs FWIW.

  8. place

    place New Member

    I have not had one in ages and just got one last week. I used doxy for a week and ran out of it. My symptoms came back. I did a search and bought a home test, it was negative. got on Cystex (target) and aloe vera caplets, two days later.... im great now. Hopefully, it will not be temporary!
  9. place

    place New Member

    I have not had one in ages and just got one last week. I used doxy for a week and ran out of it. My symptoms came back. I did a search and bought a home test, it was negative. got on Cystex (target) and aloe vera caplets, two days later.... im great now. Hopefully, it will not be temporary!
  10. MsE

    MsE New Member

    I also use a probiotic and concentrated cranberry tablet. Just talked with my doc on the phone. He actually called this evening! He assured me, again, that the culture didn't grow anything. He also said his nurse would be calling again in the morning. If this thing continues for more than a couple of days, he said he would order more tests. But, he thinks "things will simmer down" in another day. Hmmmm.
  11. MsE

    MsE New Member

    Cystex? What's that? And aloe vera helps? Never heard of that one either. What are these two supposed to do? One friend told me Alka-Seltzer was supposed to work wonders. I googled that, and found scads of info on it, so--of course--I'm giving it a go, too. But, tell me about Cystex, please. And about aloe vera--I mean, how it helps this problem. Thanks.
  12. amomwithsickkids

    amomwithsickkids New Member

    Could you explain what cystex is? I haven't heard of it either. Do cystex, aloe vera and alkaselzer help with an actual bacterial infection or IC without an infection?

    MsE, what did your doc mean when he said he'd order more tests? What kind of tests do you think he was referring to? Is he a urologist? I find it ironic that so many docs aren't aware of how many suffer from IC and/or UTIs, yet can be confident enough to say things will simmer down. I take it you feel the same way based on the hmmm.

  13. MsE

    MsE New Member

    I don't know what Cystex is. I haven't received a reply about it. Not sure what aloe vera does, either. One thing Alka-seltzer does is change the lining of the urethra. However, some of those who rave about it think it actually kills germs. I don't know.

    As for the tests my doc was referring to--well, I think he was considering testing for diverticulitis and bladder stones. One would require a colonoscopy, and the bladder stones are found, I think, with an MRI or some other scan.

    Today, is desperation, I went to a clinic in town to get a second opinion. I had to pay up front because they don't work with Medicare. After the necessary testing with their UTI strips, these people also said I did NOT have an infection. Now this is right after I had AGAIN checked with an over-the-counter UTI strip and found I supposedly had scads of white cells in my urine. I have no way to explain this, except to say that having two different labs come to the same conclusion reassured me. Something must be wrong with the UTI strips I bought, though I bought three different packs from three different stores, so...???? OR, there is something in MY system that makes those tests strips react unnaturally. I don't get it!

    Now I have orders to wait one week, and if I still have symptoms, to go back for another culture. Then, perhaps, the scan and/or colonoscopy would be ordered.

    Oh, I almost forgot: today's doctor informed me that CFS doesn't exist!!!!! Aaaarrrrggggh! I told him, "Yes it does," and he gave me a very pointed look. We dropped the subject.
    [This Message was Edited on 06/22/2010]
  14. kerrilyn

    kerrilyn Member

    If your problem is Interstitial Cystitis, I've read eating cranberry can be one of the worst things you can do for it. A UTI, which cranberry helps, is not the same as Interstitial Cystitis (IC/painful bladder syndrome). With IC, there is no infection, instead, it's inflammation of the bladder wall.

    I've been having horrible, intense pelvic pain (really low but it radiates everywhere) for about a year and half and I think it's likely IC. After going on an IC diet, which means removing all acid foods (like tomatoes, cranberry, citrus, and a variety of foods that are surprisingly off limits....each person's trigger foods are different), my pain has decreased a lot. Just taking some vitamin C tabs flared it up again. With IC there is often an increase in urine frequency and/or urgency, but not everyone experiences the same symptoms. There may be a hormonal component too, there is for me and other people find the same thing.

    The Interstitial Cystitis Network is a really good site. Like TigerLilea said the only way to diagnose it is to have your bladder scoped, at this point I'm not ready to do that. I've also heard some negative stories about the installation treatment. Everyone is different and what works for one, may not work for another. And like all these illnesses, it's easy to be misdiagnosed.

    I'm definitely not an expert, but just wanted to let you know that if it is IC, taking cranberry may make you feel worse.
    Taken from Medline Plus: "Diet modification
    Some patients find that changes in their diet can help control symptoms. The idea is to avoid foods and beverages that can cause bladder irritation. Below are some of the foods that the Interstitial Cystitis Association says may cause bladder irritation.

    Cranberry juice (Note: Although cranberry juice is often recommended for urinary tract infections, it can make IC symptoms worse.)"

    [This Message was Edited on 06/22/2010]
  15. amomwithsickkids

    amomwithsickkids New Member

    Well of course CFS doesn't exist, and neither does chronic Lyme! And in case you didn't know, the world is flat as well. Please...don't get me started!

    But seriously....

    Bladder/urinary stones ("crystals")should show up on a urinalysis. I have them, and notice that the urine is "heavy" and sinks to the bottom of the bowl. Have you noticed that? I don't know about bigger stones that can't pass through, but I imagine if one had those, the pain would be excruciating, kind of like a kidney stone or gallstone.

    I'm not getting the connection between diverticulitis/colonoscopy and urinary symptoms. Isn't diverticulitis more of a GI problem?

    I tend to think that when WBCs are present in the urine, especially in high numbers, it's indicative of an infectious process. I've had some negative cultures despite high WBC counts and symptoms of UTI, and I am always treated (long story) regardless of the culture results. I am starting to think that perhaps they don't give an adequate amount of time for the bacteria to show up on the culture. Perhaps the timeframe should be 72 hours vs. 24 or 48 hours. I don't know about the strips being inaccurate, especially since you have 3 different brands. From what I remember, these strips tend to be accurate, as opposed to other home tests.

    I don't remember if you are the person who takes the concentrated cranberry supplement. But, I have found that what I currently take...concentrated cranberry/pomegranate supplement with lactobacillus has been a tremendous help. If you want the specific brand, let me know (can't recall it at the moment).
  16. MsE

    MsE New Member

    I'm sure that doc, nice as he was, would agree that the world is flat! Thanks for the laugh.

    I was using a cranberry supplement, then I stopped when the lab said "no infection." I know that it is supposed to help stave off UTI's but I also have read, as someone on this board just noted, that it can be rough on the bladder if I have IC. I do use a probiotic. Even tried going back on a bit of estrogen, which helps, but causes heavy-duty bloating and dry eye (which is already a problem for me without the estrogen). Have a prescription for an estrogen cream, but my insurance won't pay for it--$135.00. I may try one tube anyway.
  17. MsE

    MsE New Member

    I did check the IC diet. Sounds like a lot of stuff is suspect. I'm not having serious pain--just minor--but that constant feeling of a full bladder that isn't full is difficult to ignore. I'm starting to wonder if my bladder may have suddenly fallen to my knees or something. That's what it feels like, that and sort of sore and crampy.
  18. kerrilyn

    kerrilyn Member

    MsE, did your doctors check for a saggy or fallen/prolapsed bladder (cystocele)? My mother doesn't have a major cystocele, just a saggy bladder, but she has the constant feeling of a full bladder, incontinence and pain occasionally too. She was checked for IC, doesn't have it and it took her a long time to get properly diagnosed. Her problem is that her bladder has gotten saggy (for lack of a better term, which can happen after menopause), she can't empty it completely so she gets reoccur UTI's, and sometimes they are mild and do not show on tests but she swears there is a problem. She has to take antibiotics often and had to learn how to catheter herself. It's possible what you are feeling is really what is causing you problems. Hope you find out the problem soon.
  19. MsE

    MsE New Member

    Yup. I know it's possible and no, it hasn't been checked. Sure came on suddenly, though. And I did have a UTI to start with. No symptoms until then. It's like the symptoms just didn't go away. So, yes--I am going to have to consider the possibility that the bottom dropped out of my world. :)
  20. kathyrn

    kathyrn New Member

    One of my symptoms of FMS is urinary frequency. I have had several urinalysis that did not show bacteria or UTI, but they did find a creatinine level of 1.04, which means my kidneys are not great. Normal is less than 1. Because of this, I will not take aspirin, ibuprophen, or naproxyn, since they can damage the kidneys.

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