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  • Lyme Disease

    Hi all:

    Just curious: Have any of you been diagnosed as having lyme disease? Is there anyone here who lives in the New England area who remembers either being bit by a tick and/or subsequently developing a "bull's eye" rash?

    If so, you might be interested to know that infection with Borrelia Burgdorferi (the little buggers that ticks with lyme can give you) can cause urinary dysfunction consistent with an IC diagnosis.

    Supposedly, lyme can affect both the central nervous system and the bladder directly, causing a wealth of urological and neurological problems.

    Just food for thought for those of you who seem to be having weird neurological things going on in addition to your IC. Check it out for yourself if you're interested. Take care.

    Lynne

  • #2
    Have you been checked for Lyme? The test is not accurate and it can give a false positive. I had a bullseye rash for several weeks around the time of all my problems including IC. My doc told me that if I decided to take the antibiotics it would have to be long term. Unfortunately most of the antibiotics exasperate the IC to intolerable levels. I wasn't willing to suffer that much for the uncertainty. I am also allergic to many of the antibiotics that the bladder can tolerate. Right now this is the only treatment for Lyme and it doesn't help everyone. I've been to the message boards for Lyme. I know Lymes disease has to be caught early. I am in N.E. and have deer in my back yard. I just can't take the means to a possible cure.

    Do seek help early for anyone that is suspicious of being bit.......

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    • #3
      This is a really interesting thread. Before I was diagnosed with IC, I lived in West Point, NY. I had friends who also lived there who were diagnosed with Lyme - it's really common in that area. I did have ticks bite me that I removed, the ticks were so very tiny they didn't even look hardly at all like ticks to me - only reddish dots, LOL. But I don't remember seeing a rash or anything so it never occured to me that I might have Lyme.

      But now that I am reading more about symptoms, I'm like - oh my goodness - yes I had the joint pains at the same time as IC, I had the fibromyalgia type symptoms (tiredness, extreme fatigue, wanting to stay in bed all day, sleeping too long) and when I took Amoxicillin, I got dramatically better but only as long as I was on the Amoxicillin. My joint pains went away, muscle aches gone, tiredness gone, depression gone, bladder pain gone. But when I went off Amoxicillin it came back.

      But I understand they don't have any real way of testing for Lyme? Or am I mistaken there? Because if there were a reliable test, I might ask to be tested for that, because...well, I know for sure I was bitten by ticks in an area that is known for having high rates of Lyme disease, but...on the other hand I didn't get a rash that I remember....hmmm...but it seems suspicious to me that I got so much better on Amoxicillin, and then worse again off it.

      Why would I feel so much better on Amoxicillin, if it's not Lyme? Antibiotics generally don't help IC, from what I've read - but they DO help Lyme, and Lyme can have symptoms, like you said, that can mimic IC.

      Is it worth it to ask my doctor to test, I wonder? I hate feeling like I'm neurotic, asking for every test under the sun...makes me feel kind of silly...but if there is a reliable test, maybe it would be okay to ask for testing...if there isn't any test that you can really count on, then it would be silly for me to even ask...

      Blessings, Lori

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      • #4
        I had a weird-looking insect bite around the time of IC onset.
        I was on antibiotics for 3-1/2 weeks after the IC started because my primary care doctor kept saying I had a bladder infection & they made no difference. When I went back through my med records the urine tests did not indicate a bladder infection at any time.

        7 months later a doctor asked if I'd had an insect bite, had my blood tested for Lyme disease. It came back negative.

        My suspicion is that at some point researchers are going to discover there are many forms of IC & they each need to be treated differently. I'd love it if they could figure this out soon so we don't have to keep experimenting on ourselves til we figure out what works.
        Kadi

        -------------------------------------------------------------
        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

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        • #5
          I'm back on Amoxicillin - started taking it again yesterday - and it's really a miracle, the difference that it is making in my bladder and aches and pains.

          I do not understand why the Amoxicillin is making such a huge difference in my health - and I am always aware that any change can be placebo effect and I'd never be able to judge myself - but I'm not making it up that there is a huge difference in my health on this antibiotic.

          Which leads me to wonder - do I have something else besides IC? Like Lyme, or some other bacterial type problem?

          Because otherwise, why would I be feeling so great on Amoxicillin - very little or no bladder pain, urgency/frequency way down, no aches and pains, no joint aches, no crushing fatigue/brainfog/depression - and so awful when I'm not on it?

          There is something going on in my system, and I'm going to do my best to find out what it is.

          Traditional IC - "real" IC I guess - doesn't respond positively to antibiotics. Whatever I have, IS responding very positively to Amoxicillin - and that leads me to believe I have something going on that mimics IC but is not truly IC.

          I will see what tests I can have done. I think one of them should be for Lyme. Will see what docs have to say.

          For now, I'm really enjoying the good health that Amoxicillin is giving me.

          Blessings, Lori

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          • #6
            so lori why are you back on the amoxicillian?
            Jan
            If at first you don't succeed try try again!!
            My Space


            Diagnosed: Arthritis 2002 Arthritis Foundation
            Diagnosed: IC Oct 2004 ic-network
            Diagnosed: RLS Feb 2005 RLS Foundation Southeren California RLS Support
            And my favorite url WebMD
            Taking: Mirapex, Elmiron and DitropanXL

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            • #7
              I am back on the Amoxicillin because as long as I am on it I have a complete remission from IC symptoms and also a complete remission of the crushing fatigue, muscle aches, joint pain etc. that was also part of what I was experiencing.

              Today I just realized - I went three hours (doing errands, grocery shopping, etc.) without having once had to go to the bathroom. Woo hoo!

              Blessings, Lori

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