Water, only water, and a good amount of it. It is counterintuitive to drink more water, but it helps.
Gluten and casein free diet.
30 minutes of pelvic floor exercises daily is imperative. I didn't notice anything for many months, then it hit me and was a huge help. To this day, I can tell if I slack off on pelvic floor exercises too long bc IC symptoms flare.
My pelvic therapist said I was one of the worst cases she had ever seen and only told me this after I started making marked progress that she had doubted I would ever get better. IC is now the least of my worries.
Best wishes.
[ 07-03-2016, 09:27 PM: Message edited by: me ]
Posted by bluelyme (Member # 47170) on :
My nurse had it .and blames it on borrielia vinconii. She is working now after 1 yr abx 1 yr h202 , 3 yrs bvt ,rife l,ots of other things ...its a decriptive dx..as lyme loves the kidneys bladder adrenals
Posted by garnet10 (Member # 48181) on :
Thank you all for responding. It is interesting that this started at exactly the same time as my intermittent, crippling fatigue, right after the radiation therapy.
bluelyme, I am hoping that my Douglas Coil that's on order will help.
I have done so many different dietary changes, and right now with all the antibiotics I am on, I'm hoping I don't have to change my diet yet again (currently on the ketogenic diet which should help prevent yeast overgrowth).
Oxalates are a definite problem for me--I avoid tea and anything containing green tea extract and doing my best to keep high and medium oxalate foods to a minimum.
Posted by LilaLee* (Member # 43649) on :
I've found the worst offender for me to be coffee, even decaf. I can have an occasional cup but if i have it two days in a row its BAD and everything is stirred up for days.
Posted by Keebler (Member # 12673) on :
- bluelyme,
Google gave me nothing for that Bb strain you posted. Wonder if it might be this one?
MYCOPLASMAS - INFORMATIONAL LINKS SET -
Posted by Keebler (Member # 12673) on :
- What helps me with UTI and similar issues:
Green Tea, I drink this pretty much from late morning to late afternoon - reusing the same strainer of loose tea. Caution that tea bags often additives including "natural flavors" that can be very neuro excito-toxic. Best to avoid all "natural flavors".
However, oxalates are in all teas so consider that in the mix. Oxalates are higher in the dark teas such as oolongs and black teas, though.
[ 07-03-2016, 06:34 PM: Message edited by: Keebler ]
Posted by Lymetoo (Member # 743) on :
garnet... It's good that you know about oxalates... Read the info in the link I gave earlier about "dumping" .. sometimes your IC will go crazy as you dump the oxalates.
(see info posted on July2)
It's good to know what is going on so you can adjust your diet.
Posted by me (Member # 45475) on :
I've had a few PMs regarding my IC symptoms, progress, and what I did to make progress.
I know some people are more comfortable talking about this more privately, and others don't mind posting IC questions publicly. If you aren't comfortable posting to this thread and have questions about IC, I can tell you my experience. Just send me a PM.
Like I said above, my IC and associated symptoms were severe, and my pelvic therapist said I was one of the worst cases she had ever seen. She told me after the IC started getting better that she never thought I would get better.
A good book to read is "Beyond Kegels."
[ 07-03-2016, 09:26 PM: Message edited by: me ]
Posted by Keebler (Member # 12673) on :
- The book "me" just suggested reminded me that, for some - or for some at times - Kegels & pelvic floor exercises just won't work at all if the pain is so severe from UTI &/or vulvodynia or Vulvar Pain Disorders.
Other than severe pain, the nerve endings can also be so inflamed from various infections in the nerve fibers that "rest" is essential. So for anyone in this situation, general guideline would be don't do anything that causes pain or irritates.
Don't try to push through pain or irritation. Think around it, instead, and treat any underlying infections, administer wise topical gentle ointments, though NO steroids, no harsh chemicals or petroleum in the ointments.
Imagine having shingles virus in the nerves around the waist and being told the "Twist" dance or hula hoop exercises are required. No way. -
Posted by bluelyme (Member # 47170) on :
Thanks for the correction keebs ...yes vincentii
Posted by me (Member # 45475) on :
quote:Originally posted by Keebler: - The book "me" just suggested reminded me that, for some - or for some at times - Kegels & pelvic floor exercises just won't work at all if the pain is so severe from UTI &/or vulvodynia or Vulvar Pain Disorders.
-
Yes, as always, good insight Keebler. Thank you for chiming in.
Just as we all respond differently to Lyme treatment and there are different levels of severity and symptoms, same with IC, pelvic floor dysfunction, and vulvodynia (all of which I experienced).
So what may work for some, including myself, may not work for others. However, I'm happy to share my experiences and if it helps someone or gives someone an idea for treatment options to explore, that would be fantastic.
Posted by Silverwolf (Member # 9196) on :
Hi <<<<< garnet' >>>>>,
Sorry to hear that the IC is bothering you, it seems it is a common problem with people who have Lyme Disease. I have it also, and will be undergoing some various testing starting this week.
I see a lot of great advice here on your post's replies. I know for me, lots of water, helps ease it,and is important.I found I cannot eat tart apples, and other acidic fruits and veggies,are a problem. I am finding D-mannose very helpful.
My dietary lifestyle is rather limited,but worth it to keep the pain at bay,and get to a healthy weight.