I've got a friend who has had lyme for 17 years and has interstitial cystitis.
She's not well enough to post on here, but I was wondering if anyone here knows of anyone who has been able to overcome this painful and persistent condition which is lyme-induced and can send me an IM with the name of the physician that helped them get through it, the methods, etc.
This person is really suffering with this. It's very painful. She can't eat anything, it only makes the pain worse.
Posted by GretaM (Member # 40917) on :
Treating bartonella helped me immensely.
When my bart relapsed, the bladder issues returned.
Things that helped me immensely (aside from bart treatment),
1) Avoidance of any sodas, aspartame drinks. One glass of diet soda now is like an instant IC flare.
2) D'mannose. 4 capsules 4 times per day for 4 days (to load), then 2 capsules 3 times per day.
3) Avoiding cranberry juice
4) Vaginal Probiotic. Such as Fem Flora by New Roots (a probiotic suppository)
5) Oral probiotics made for female system. RenewLife VS formula 50 billion cfu in the pink box.
I was a regular with a urologist before I started the above.
Sorry your friend is going through this. It is the more annoying and life disturbing symptoms of TBDs.
Posted by Lymetoo (Member # 743) on :
Greta has a good list there. Mine is much much better after Lyme and babesia treatment nearly 10 years ago. I was dxd with IC in 1992.
Tell her to also avoid sugar like the plague. I think candida/yeast makes it worse. A few months ago I began eating sweets and was eating foods high in salicylates and histamine.
When I stopped doing all 3 of those, my IC symptoms went back to "normal."
IC no longer controls my life like it used to.
One thing that some people have used is a product called "Aloe Fields" .. She could also try George's Aloe. It does not have any citric acid in it. She needs to be SURE to avoid citric acid LIKE THE PLAGUE.
Thanks for your replies. I'll pass it on to her.
Posted by Dogsandcats (Member # 28544) on :
Private message sent.....
Posted by bla (Member # 42361) on :
Ditto what GretaM said. I've had IC for 12 years. I'm much better now than I was the first couple years with it.
Avoid acidic foods/drinks, for sure. My treatment was three months of abx. I herxed terribly, but the last week of treatment was like a miracle, the symptoms lifted, and I felt like a new person.
Sadly, once the treatment was stopped, my symptoms returned. I was not being treated for Lyme at the time. So, getting an abx for a period of three months was an achievement in its self. My symptoms came back
Also, my experience with the diagnostic procedure called laproscopy was somewhat different than others'. I was put to sleep for the procedure, and what they did was fill my bladder with a solution, stretching it to the max, and used a tiny camera to look at inside of bladder wall.
Something about the stretching of my bladder, I think, but the procedure was therapeutic for me. I didn't have any IC symptoms at all for about a week after, and my symptoms never went back to pre-procedure levels even after a week.
I've been doing much better since. Not everyone has this experience with the laproscopy, though. I've read that it made some people feel much worse.
Other than that and long term abx, plus managing acid levels, I don't know what else there is. I feel for anyone suffering with IC, knowing how horrible it is first hand.
Oh yeah, don't take ibuprofen. It makes the bladder flare something terrible. Some people don't know that and take it thinking they're remedying their painful bladder when they are actually doing the opposite, making it feel worse. Good luck.
Posted by Phoiph (Member # 41238) on :
Chaps...
Hyperbaric Oxygen is showing positive results for IC:
Also, my experience with the diagnostic procedure called laproscopy was somewhat different than others'. I was put to sleep for the procedure, and what they did was fill my bladder with a solution, stretching it to the max, and used a tiny camera to look at inside of bladder wall.
Something about the stretching of my bladder, I think, but the procedure was therapeutic for me.
- Yes, that procedure (not called a laparoscopy) is supposed to be "therapeutic"... It helped me the first time but when we repeated it a year or so later it made me so bad I had to quit teaching. I think the correct term is "bladder distension" but of course that is not the technical term.
Posted by GretaM (Member # 40917) on :
Right! Excellent point bla! The ibuprofen does make the bladder sting! I haven't taken it in so long I forgot!
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