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» LymeNet Flash » Questions and Discussion » Medical Questions » lyme and interstitial cystitis

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Author Topic: lyme and interstitial cystitis
cozynana
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Early in my illness one of my first symptoms was buzzing and pain in my vagina/bladder area. Slowly over the period of over three years my bladder has gotten better with restricted diet. I was down to no pain. I started on Allinia and BAM! My bladder pain is back. I am really feeling sorry for myself. I thought killing parasites would help me. Can I be herxing? I went off of Allinia. I just can't take the pain. I am calling my LLMD on Monday. Till then I am licking my wounds and continuing saunas, lots of water, and reassessing my diet to see what else may be causing this pain. I really do think it was the Allinia though. Anyone else have severe bladder/vaginal pain? Two steps forward and one back, the story of my life. I am better than I was a year ago so I am going to try not to get upset.
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kidsgotlyme
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I too have IC. I have to be careful about what I take or eat because of my bladder. Maybe the Allinia was doing it's job and that's why you were hurting so bad. I hope your Dr. can help you through this.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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elainer97
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About 10 yrs ago I had a huge initial flare of this that actually started with a bladder infection caused by a narrowed urethral opening (having kids caused scar tissue at urethra). Anyway a urethral meatotmy took care of that and no more bladder infections, but I still felt like I had one, plus had started having awful pains in vaginal area: burning, stinging, pinching, tingling, crawling, pulling sensations and extreme dryness.

Long story short, new gynecologist said IC and vulvodynia. Low oxalate diet helped to get it bearable and I figured out a few triggers to avoid like black pepper and, sadly, vitamin C. Also I just figured it was all part of the craziness that is fibromyalgia (had been diagnosed wth that about 20 yrs ago- only got Lyme and co diagnosis this yr)

I kept having flares over the next few yrs then started accupuncture treatments which helped ALOT wth the IC and vulvodynia. I realized when he treated my sciatic area, that helped the most, weird but true. Those nerves seem to wrap around to that area. You might try accupuncture to help til your Lyme treatment takes care of it.

I can't do the accupuncture anymore b/c of finances (focusing money on the Lyme treatment instead of symptom treatment) but if I were to have a bad flare of the IC and V, I wud go back. I do still have some probs with it but it's bearable.

Hopefully this is a herx for you but whether or not it is, hopefully it will soon get better. This is one of those things that ppl who don't have it can't really relate to the pure misery of it.
Saying a prayer for you [Smile]

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Lymetoo
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Boy, I'm not sure I would continue it or not. My IC got 90% better with Lyme and babesia treatment. Turned my life around. IC had ended my teaching career. If I were you, I'd try another drug or herb instead.

Sounds like me, elaine. I've had Lyme since childhood, but was dxd with FM in 1980, IC in 1991 and Lyme in 2000. IC is the worst pain ever. I guess V is equal to that. I lucked out there.

I still don't eat acidic things, but it's usually my stomach that rebels, not my bladder now! I can get away with a few pieces of an orange or a few tomatoes but I don't push it.

--------------------
--Lymetutu--
Opinions, not medical advice!

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cozynana
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I am much better today. I think Allinia has cleared my system. I am going to ask for something else. I couldn't even urinate well. I don't need that. Oh well, as we know with this disease things are constantly changing to something new and uncomfortable. For today I am grateful for a good enough day to go clothes shopping and enjoyed myself.
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Lymetoo
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Whew!! I've had one or two flares in the past 10 yrs and it made me SOOOOO appreciate NOT being in pain like that all the time!!!

Hope you continue to improve.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95430 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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