This is topic anyone cured from interstitial cystitis? in forum Medical Questions at LymeNet Flash.


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Posted by Shahbah (Member # 28735) on :
 
I have read one or two posts from people who said their IC was now under control, but how many with lyme sent their IC into remission with abx? If so, how long after lyme did your IC go away? Or maybe IC has nothing to do with lyme, it's just that one triggers the other... Also, does IC get better with age or does it just stay the same forever?...
thank you!!!
 
Posted by one4islands (Member # 28187) on :
 
You may have read my posts on IC.

I was diagnosed a year ago after suffering for about 8 months of pelvic pain, that two gyns and a urologist could figure out.

I made a self diagnosis via the Internet, saw a new gyn and had a cystoscopy done at her recommenedation as she agreed with my diagnosis-BINGO!

I have completely cut out all the food that were irritating my bladder that I was unaware of .

To be healthy, ever day I had two cups of decaf green tea, a piece of dark chocolate, grapes, and an orange.

I also loved my ketchup-great source of lycopene.

Mexican food-yummy.

No more of any of that-no pizza with tomato sauce either.

Since cutting out all of that they pain is pretty much gone, though I do still have frequent urination that has gotten worse with abx and other pills.

I have heard that if you don't watch your diet and cause inflammation it does permanent damage of the bladder.

I certainly don't want it to get worse, so I can live w/o those foods.

My gyn did say a patient she has swears by Aloe juice for her treatment.

I think that my IC is caused by Lyme.

I've had Lyme symptoms for about 8 years worsening in the past 3 years.
 
Posted by pattiecake (Member # 6424) on :
 
I actually got relief from it with parasite and candida cleansing.
 
Posted by jennie08 (Member # 17351) on :
 
I had IC years before my lyme disease so I'm not sure how antibiotics,etc affect it -- diagnosed in 1998 and "fixed" 2001. IC is no longer a problem for me. A naturopathic doctor had me take 6000mg of MSM a day. I did it in 1000mg capsules 3xs a day.
 
Posted by Pammy (Member # 15695) on :
 
jennie...what is MSM?
 
Posted by Shahbah (Member # 28735) on :
 
great thanks for giving us hope... Actaully I wonder to what extent IC is from excess fluid in the blodd and not a "local" problem, maybe that is why they have trouble finding the cause...
 
Posted by jennie08 (Member # 17351) on :
 
Pammy, MSM is dietary sulfer. It's found in our bodies and food. It comes from DMSO which is often used for bladder instillations in IC.

Here's an FAQ link I found:
http://falconblanco.com/health/msm/msmq&a.htm

It's from the internet, though, so you never know the validity of all the info but it has some good basics.

I ordered it from vitamin shoppe -- Doctor's Best 1000MG.

I'm not sure about lyme-induced IC, but MSM helped my regular IC. Might be worth a try...
 
Posted by Lymetoo (Member # 743) on :
 
I blame Lyme for my IC. I've had Lyme since childhood and had trouble with my bladder for years, beginning in my late teens. Mostly frequent urination at that time.. but not really bad.

Then in the early 90's it got really bad and I was in severe pain. I was diagnosed with IC in 1992. I had many horrible diagnostic procedures and bladder instillations over several years.

Diagnosed with Lyme & babesia in 2000. I think my IC began to get better about 2 yrs into treatment with abx. It's still around but much better. I am prone to infections in the bladder but everything is still way better than it was.

I fully believe IC has an infectious cause. There are too many people here who have it .. and there have been others here over the past 10 yrs who also had it.

To be "officially" diagnosed, you need a bladder distension, done under anesthesia. But trying the diet first is a good plan since the diagnostic procedure is very painful .. for days and days. Sometimes the procedure makes the IC better once the pain dies down.

But the second time I had it done (in hopes of it making me better) .. I got worse and that is what ended my teaching career. I had also been diagnosed with "fibromyalgia" about 10 yrs prior to this.

---
I don't have to follow the diet anymore. [Smile]
 


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