This is topic Interstitial Cystitis and Lyme? in forum Medical Questions at LymeNet Flash.


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Posted by Ann-OH (Member # 2020) on :
 
Anyone have any information or solutions?

Thanks,
Ann - OH
 
Posted by Lymetoo (Member # 743) on :
 
IC
www.ic-network.com
www.ichelp.org

For me, the Lyme treatment helped tremendously. Were you just diagnosed? Following the diet religiously??
 
Posted by Cobweb (Member # 10053) on :
 
Hello-
chronology:
2004- diagnosed and treated for Lyme by DUCK for three weeks.

A month after completing original treatment I developed abdominal pain and frequent UTI's.

March 2006-Two years later I was diagnosed by urogynecologist with Interstitial Cystitis and began treatment.

April 2006 I was diagnosed with Chronic Lyme and began treatment again for Lyme.
LLMD also told me many of her Lyme patients have IC.

I hang onto Lymetoo's words that Lyme treatment will alleviate IC symptoms.

Carol B
 
Posted by Lymetoo (Member # 743) on :
 
It has helped alot, Carol! Took about 2 yrs, if I remember correctly. Diet helps alot too.
 
Posted by Foggy (Member # 1584) on :
 
Abx didn't help my IC. Elmiron did, though it took a feew months. It's no picnic, I sympathize.
 
Posted by Cobweb (Member # 10053) on :
 
I do the Elmiron,too and have had bladder instillations, was supposed to learn how to do them at home-but I ran out of money because of delayed disability due to lyme.

When I am rolling in the dough(whole grain only)again I'll pick up on IC treatments. Meanwhile all doctors' apppointments but my LLMD's-and she's not even getting paid-are on hold.

I feel like Dustin Hoffman-what's that movie?-I think I'm going to die on that bus ride to New York.
and that's okay- I know all my lyme buddies will give me a proper send off. Bury me with a laptop logged onto Lymenet.

Carol B [Razz]
 
Posted by Ann-OH (Member # 2020) on :
 
I do not have IC.

I am asking because another Lyme patient contacted me about it. I will pass on your comments.

I looked at the websites, which look very good.

Thanks,
Ann - OH
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by Ann-OH:
I do not have IC.


That's good news!! But bad for your friend!

Cobweb....Yep, a laptop connected to Lymenet. We should all die that happy! [lol]
 
Posted by Jill E. (Member # 9121) on :
 
A yahoo group called LymeTreatments is a small group of IC patients who all turned out to have Lyme.

Bladder pain is a major issue for them so the discussion often is of which antibiotics make bladder flares worse or better. Very nice group of people.

Many of them work with particular practitioners who are specialists in IC, then began to realize a sub-group of patients were Lyme, too. They know IC specialists that I was not familiar with - you'll get some names that you don't normally hear within Lyme circles.

My IC-like symptoms pretty much resolved shortly after I started antibiotics for Lyme but I do get flares every now and then.

Jill
 
Posted by Lymetoo (Member # 743) on :
 
Hey Jill. What's the website URL for Lyme Treatments?
 
Posted by Jill E. (Member # 9121) on :
 
quote:
Originally posted by Lymetoo:
Hey Jill. What's the website URL for Lyme Treatments?

Here you go:

http://health.groups.yahoo.com/group/LymeTreatments/

Jill
 
Posted by cantgiveupyet (Member # 8165) on :
 
I have IC too....its not fun. but diet helps a bunch.

My IC symptoms started october 2005
lyme diagnosed Nov 2005
Had a bad bought of bacterial vaginosis Jan 2005
which gave my bladder a very bad beating, a long with yeast.

IC finally diagnosed May 2006 with a hydro/cysto

The yahoo group is a great group of people.
 
Posted by gabby (Member # 10647) on :
 
Hi yall!

I have IC. My IC symptoms began about 5 years ago.. was diagnosed about a year and a half after the onset with IC by a hydro/cysto. I had myself tested for lyme about two months ago, which came back positive.. but, I have reason to believe that I've been dealing with lyme issues ever since childhood, I just never gave it any thought, before this.

No one in my family ever talked about lyme or worried about it. I don't remember ever being checked for ticks, as a young child by my parents.. lyme was just never a thought, even though we live in a fairly woodsy part of PA, and I spent much time outdoors (and in the woods) ever since I can remember.

gabby [bonk]
 


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