Hi I was just wondering if anyone here has been diagnosed with interstitial cystitis and if it has gotten any better with treatment? Bladder pain is my main concern so any info would be appreciated! thanks so much Posted by Lymetoo (Member # 743) on :
YES!!! and the good news is..... Mine is 80-90% better after years of Lyme treatment!! WOOOHOOO!
Quite a few people here have it. You can do a search here by clicking on the little word "search" in the upper middle of this page.
Then type in interstitial cystitis.
====== Click on Medical Questions for "which forum."
also.. click on the second icon next to the date by my name... you will find my story there
Posted by cantgiveupyet (Member # 8165) on :
I have it..feel free to search my old posts as well.
I have pelvic floor dysfunction with my IC , so physical therapy has helped me the most...that and the IC and gluten free diets.
are you taking anything to help with the IC?
how long have you been treating the lyme?
Posted by trish20 (Member # 23322) on :
Im glad you are doing better! I am not taking anything for IC right now because I dont know what to take. I dont want to hurt it any more. I took years of antibiotics for sinus infections and I dont think i want to go that route. I just recently found out I have Lyme like a month ago so I havent started treatment for that either. I tried to search for it and even typed in bladder pain as well but no one really talked about if they got better and what they did to get better (atleast from what i saw).
what have you been taking Lymetoo to get better? At this point I am too scared to even have sex. It sucks so bad and I just want to be normal again. Do you still have to be extremely careful about what you do?
cantgiveupyet- Have you been treating lyme with anything as well and did that help your bladder? or do you think those are not connected for you?
I want to try gluten free because I have stomach issues as well. I just dont know where to start and what to do first. Im scared anything i take will just set me in a flare. Im scared to death. Thanks for replying tho! like i said before any info will help so much!
Posted by Lymetoo (Member # 743) on :
I'm also gluten free FWIW.
I've been off abx for 5 yrs now. Took just about everything for Lyme and babesia.
The only thing I LIKE to avoid is traveling!! I always want to stop WAY before my husband is willing to stop!
He understands to some extent.. but I don't think he quite gets the PAIN part! When we travel to TX we can't just stop every single hour. We'd take too long to get there. We always drive straight through.
OH well.. that's only twice a yr!!
Posted by dogmom2 (Member # 23822) on :
I had IC from some meds i was taking. I took the supplement dgl plus and it helped.
Take care, diana
Posted by trish20 (Member # 23322) on :
so is that the only symptom you still have of ic lymetoo? Can you drink and eat and have sex normally again? sorry to be a little personal. or do you have to still be very cautious? And can I ask how long you had IC and what your symptoms of it were. Sorry I am asking so many questions I am just new to this lyme stuff and have so many things i would like to know especially about IC. thanks again! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo:
also.. click on the second icon next to the date by my name... you will find my story there
Very little trouble with sex. Nothing like before.
My main symptom was PAIN and frequency. I NEVER had relief even after visiting the bathroom. The urgency and pain would start right back up and get worse with every minute. One day I counted how many times I went to the bathroom and if I remember correctly, it was 30 times.
I was dxd with IC in 1992.. no telling how many years before that I had it. I've had Lyme forever. Most of my IC symptoms were gone by 2003. I began Lyme treatment in late 2000.
PS... the video at the end IS NOT ME!!!
Posted by Imaginit (Member # 20399) on :
IC was one of my first major symptoms something was wrong--it would be eight years before I was diagnosed with lyme. Those little spirochetes love the bladder.
I "cured" myself with a year of chinese herbs and acupuncture. My case was very severe and I refused to do what the urologist wanted with DMSO and their other treatments which are inhumane.
The number one thing that helped was to keep my body as alkaline as possible. Never, never drink tap water...Walmart's Sam's club water is one of the most alkaline waters out there and not too expensive. Not sure where I read it so don't take it as Gospel but it was like a 7 or 8 ph.
Lots of veggies, hot baths and yes absolutely stay gluten free.
The other thing I used before I knew about Lemon water and its alkalinity was Coral Calcium. Seemed to help a lot.
I so understand your frustration and pain--I always described it as little slivers of glass. I can't tell you if my lyme treatment has helped or not in this area as I've only been on a limited amount of abx for 10 months and I wasn't having IC symptoms when I started treatment. Who knows they could still be hiding out there because I have other symptoms such as taking a long time to start to urinate. Sigh this disease never ceases to amaze me--in a not so nice way.
Hang in there.
Posted by MADDOG (Member # 18) on :
IC destroyed my carrer.
I worked as an auto mechanic for 34 years ,as a factory worker in a welder company for 4 years.
I was exposed to the same chemicals on both jobs.
Mainly trichlorethane 111,it and toulene,exylene,perchlorethlene,gasolene,benzine.
The chems get in the blood through the lungs ,the kidneys remove them and dump them in the bladder were they eat the lining away in 38 years.
I cant even visit my friends i worked with in the shop ,or spend time in walmart near the auto shop or i am hurting real bad.
And to long in any part of walmart kills me.
I could wright a book called WERE THE RESTROOMS ARE IN THE USA,and sell it,because i am allways using them them.
And all the poor trees allso AAAOOOO!!!!!
MADDOG
Posted by trish20 (Member # 23322) on :
well thats great your better lymetoo. Im guessing you are able to eat things now again? and you dont have to be as careful?
imaganit- you said you cured yourself of IC with chinese medicine? can you please pm me with more of your story and what your symptoms were and what you did to get better? do you not have any symptoms now at all?
maddog- i know how frustrating it is. I never thought i would hear myself say i envy people with lyme but until you have bladder pain and problems you really dont realize how lucky you are when you dont have them anymore or never did to begin with.
thank you everyone for responding! The ICN is so wierd about certain things and I never get responses so thank you!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by MADDOG: [QB] IC destroyed my career.
I could write a book called WHERE THE RESTROOMS ARE IN THE USA,and sell it,because i am allways using them them.
Ditto to the above!!!
I lost my teaching career to it. Imagine that...trying to teach with IC is like being a sailor with no legs.
I no longer have to watch what I eat. I have oranges in my refrigerator!!! I have had one or two flares that scared me to death...last one was over a yr ago. The pain went away before long....whew. Could have been something I ate.
I was having trouble with UTI's but those are under control now by taking D-Mannose with Cranactin. Don't try that one unless your bladder is in good shape. The cranberry stuff is a litte irritating!
Cranberry used to be my number one NO-NO...along with oranges and even bananas.OUCH.
Posted by Faith6 (Member # 14072) on :
Do any of you have the symptoms of IC even when the bladder looks ok?
I have had pretty severe symptoms the last 6 months, but when checked everything was fine....
Posted by Lymetoo (Member # 743) on :
trish... Have you tried www.ichelp.org ??
Posted by Jane2904 (Member # 15917) on :
Daughter started with severe urgency and frequency with urine, Lyme treatment has helped. She would get burning once and awhile too.
Now, we seem to be dealing with just the urine frequency. It is getting a bit better. The Rifampin seems to help.
Hope you feel better.
Forgot to say that we saw two urologists and they were no help. All her tests were normal. VCUG, bladder scans, ultrasounds, Urodynamics.
Posted by Lymetoo (Member # 743) on :
Faith...lyme does attack the bladder and you could have some bad symptoms without having actual IC. IC can cause extreme pain.
Jane.. Did they test her for IC? You have to find a urologist who will take a serious look at the possibility of IC.
Trish.. You should be able to take D-Mannose without the Cranactin. It's supposed to help!
and... I just remembered something I have to avoid... garlic. I can have small amounts as a cooking aid, but not in capsule form.
Posted by trishee (Member # 9699) on :
I was told my bladder looked ok but they called IC because of pain symptoms. All are gone with agressive IV lyme treatment. Orals didnt' work for me. IV meds were absorbed better by my body and got me into remission. Celiac caused non absorption of meds.
IC is gone. I pray the same for you.
Posted by cantgiveupyet (Member # 8165) on :
trishee- what IV abx did you take?
imaginit- what Chinese medicines helped you?
Posted by cantgiveupyet (Member # 8165) on :
I forgot to add that taking prelief before foods that I know might flare me really helps.
Posted by map1131 (Member # 2022) on :
Yes, I have a beautiful young adult niece that has suffered through this for years. Of course, she doesn't have lyme disease says my sister. Nope!
Doesn't matter that her health went crashing down a few weeks after removing a embedded deer tick. It is only my misfortune that a tick made me ill.
The doctor says my niece has a unknown bacteria that is causing her problems. Lets just treat her with steriods. Let's continue to let her run these fevers, experience pain and flu-like sx. UUUGGGGGGGGGGGGGGGGGGHHHHHHHHHH
Pam
Posted by trish20 (Member # 23322) on :
Lymetoo- yes i have checked out ichelp.org. Ive pretty much been to all the forums for IC and now for Lyme. I tried D-mannose a long time back but it didnt help at all. I was also on so many antibiotics. They found enterococcus bacteria in my urine a couple times but I dunno if thats really something to worry about anymore.
Its all so confusing I just want to have my life back. Im so young I just cant do this anymore. I know my stomach is a mess too I just dont know what to take cause i dont want to make my IC worse.
thank you jane and map everyone else for responding. I wish my bladder looked fine when i did the cystoscopy but it didnt. i am losing hope fast and need help or im gonna give up. I never get help anywhere else on the IC boards so its nice to see people responding here!
Posted by kidsgotlyme (Member # 23691) on :
Trish,
I have had IC for almost nine years. Knowing that it can be a symptom of lyme makes me wonder if I have it.
My daughter tested positive in Sept and we have an appt. on April 1 to get her started with treatment.
I have been diagnosed with IC, IBS, FM, and CF. I'm thinking I probably need to do the western blot test.
My IC is manageable through a strict diet. I don't take any meds for it. I was drugged up for about four years before I decided to try more natural remedies.
Barley grass or wheat grass soothes my bladder. Also, baking soda in water will help a flare.
If you haven't checked out the IC diet, I would suggest that.
Hopefully your lyme treatment will resolve your problems. That would be such a blessing!!
Posted by Lymetoo (Member # 743) on :
map... That is so sad about your niece!!!!
oh yeah... Vitamin C is another avoid for me. OR did I say that one already??
and yes, the diet is very important until you get it under control.
Posted by Faith6 (Member # 14072) on :
Does anyone have the symptom of being frantic when it is really acting up?
![[Smile]](smile.gif)
![[Wink]](wink.gif)
I have had one or two flares that scared me to death...last one was over a yr ago. The pain went away before long....whew. Could have been something I ate.![[shake]](graemlins/shake.gif)