I wish more people would post their success stories

[PlainJane]

I realize that when people get better they are out in the world living their lives which is great but I just wish they would come back and write a short post about what helped them. It doesn't take much time and it could really help out a lot of people who are suffering. I feel like we owe that to eachother. It is so hard navigating the medical system and the internet! It can get really lonely and scary and I think it helps a lot to hear about what works for other people.

I don't mean to say that the people should come back to the ICN regularly just come back and post a short summary of what helped them. I realize some people feel like this is "jinxing" their recovery. Maybe they could wait a year or so and then come back and post.

I promise if I find something that helps me I will come back and post about it. Right now I am being investigated for Lyme disease after receiving a postive Lyme test through Bowen research (http://www.bowen.org/) and I am trying to find out how/if this Lyme could be related to my bladder symptoms. I am working with Ruth **** on this issue as well as on the strep d bacteria that showed up in a Broth culture done through United Medical lab. I will post about how my treatment goes and hopefully will have a success story to post soon enough.

Erica

[traceann]

Hey there Erica! I agree, it's nice to hear success stories isn't it? When I first came here I clung to them - I was bound and determined that I was going to feel better, they did it, so could I! And honestly, I have. I thank Elmiron, Hydroxyzine (which I still take) and Ditropan. Those meds + the diet got me through the dark days until the Elmiron started to do it's thing.

Now, all I take is the Hydroxyzine and just recently started the Algonot Plus (changing to Cystoprotek soon) to keep things happy, without the side effects of Elmiron I had started to develop. But, I am glad I took it for as long as I did (a little over a year), as I give it a lot of credit in my combination of meds.

The other thing that helped me out and I know it sounds trite, but is attitude. I tried to never doubt I would feel better again. Some days were hard and it was hard to keep the positive attitude, but I let myself wallow for a bit, lol, then right back at it. ;)

I also in the beginning tried to just stay with the positive posts, the other kind just upset me and stressed me out more. I was a bit too vulnerable at that point in my newly diagnosed state to be able to think clearly and objectively about things. Instead of stopping and thinking "just because it happened to them, does not mean it will happen to me" I immediately jumped to "OMG, that's going to happen to me!!" lol, not good when stress can aggrivate bladders, lol.

Now though, it's a different story. I have no troubles reading everything, lol, - and that's why I stuck around to help out. I remember what it's like to be so confused, scared and just plain lost. I hope to pass on the positiveness and the information I learned from everyone here when I first joined!! ;)

[ICLori]

I think the reason there aren't many success stories, is because there aren't a lot of meds that are very effective for IC. So most of us (I think) still struggle with symptoms despite treatment.

If CyA "fixes" me I will be sure to post about it, believe me. Going in to the doctor today to pick up the prescription - hope the pharmacy has it in stock.

Blessings,
Lori

[DONNAW]

HI EVERYONE. I HAVE BEEN FEELING MUCH BETTER THE LAST FEW DAYS
I DON'T KNOW WHAT IS IT IS THAT IS HELPING ME, BUT I HAVE A COUPLE OF IDEAS OF WHAT IT COULD BE. I HAVE UP THE MG OF ELAVIL TO 50 I SLEEP VERY WELL NOW AND ALSO MY JOB HASN'T BEEN QUITE SO STRESSFUL LATELY. I HAVE BEEN EATING PRETTY MUCH WHAT I WANT WITHOUT GOING TO CRAZY. ALL I KNOW IS IT FEELS GREAT AND I HOPE IT LAST. IT IS ALSO SUMMER TIME AND THERE ARE NO KIDS TO TAKE OR PICK UP FROM SCHOOL!!:smile tee SOMETIMES MY IC SEEMS TO FLARE MORE IN THE WINTER. DOES ANYONE ELSE NOTICE THAT?
THANKS, DONNA:grouphug:

[vm]

My patient story is listed in the Patient Stories section. It was written about 3 years ago, I think, and was positive then, but I feel much better now. I try as much as possible to share my good outcome on the boards - I promised myself that when I felt better I would stick around....

I honestly have no symptoms at all probably more often than 95% of the time and it's been that way for a few years. It IS important to hear success stories - it's what gave me hope in the beginning.

[Briza]

Now though, it's a different story. I have no troubles reading everything, lol, - and that's why I stuck around to help out. I remember what it's like to be so confused, scared and just plain lost. I hope to pass on the positiveness and the information I learned from everyone here when I first joined!! ;)

Same for me. It was very scary in the beginning when it all started to sink in. But that is normal, I think, and with time came acceptance, better drs, a treatment plan, and I hope too that I am able to contribute something after all that I have received since I joined.

I really feel that I do see a lot of people posting who have had success. Yes, not all treatments work well for all people, but I see people everyday post that they have had success with this, or that, even if they aren't 100% symptom free, I still see that as a success! Would be great if there were one magic pill that would work for all of us and all us and all of our symptoms, but until then, determination and finding those pieces to the puzzle that help little by little are successes and I love to hear about them, too.

I posted what I consider my success story, in StacyM's thread. While I am not cured nor in complete remission, I have fitted together enough pieces of my puzzle that I am living very well with IC and if someday I am 100% better, I will definitely let everybody know and will have a big party to celebrate, everyone's invitied, but til then I am content to have gotten to the point I am at today.:)

[traceann]

:) For me it was vm's story that I held on to, it was so nice to "hear" a positive outcome. And I agree with Briza, for me success didn't mean totally 100% symptom-free. (that is bestest case scenario though, lol) Anything that allowed me to feel and able to behave a bit like my old self was good enough for me!! ;) Didn't have to be perfect at all!! lol :)

[massagedoula]

If success does not mean 100% symptom free then I will also post my success. I was waititng until I went into complete remission---but now I see that remission is subjective.

I am doing very well, with diet and Elmiron. Elmiron has really given me much of my life back, and I keep taking it everyday, and I will until we start to TTC in a few years. I hope by then I will be doing so much better that I don't even need the meds, and I can just control by diet.

Even though I am doing well, I still look for the success stories too! It makes me feel like there is hope for us all...seeing how people feel better from so many different avenues.

[vm]

Thanks, traceann. :kissing: Just think, your story is doing the same for other people, too.

[traceann]

You are very welcome! And it's true!! LOL, I can even remember telling my hubby about you, and that if you could do it, so could I!! ;)

[emilyrose197377]

I do post on how I am doing and feel like I am in remission. Unfourtnely my remission has ended because of a uti.

[vm]

ICNDonna and MelanieJ (who doesn't post anymore - or not in awhile) were my sources of real hope. I devoured their messages when I read the boards. I clung to their every word. LOL

I will also never, ever, EVER forget when a woman posted that she was able to eat lasagna again. :lmao: I honestly don't remember any other specific posts from early on but that one. :loco: I remember posts in a general way, but that one stuck with me b/c I remember thinking, "I want that to be ME!!!!!! It's possible" :pray: ;) (And it did come true. :) )

[marsi4]

I am also much much better since a month ago. The only think I have left is mild to moderate pain daily. All my other severe symptoms have subsided. I'M no longer bedridden and housebound and feeling better. I now suffer more psychologically than physically because I'm still traumatized by my severe symptoms and pain which which I felt for over one year. I am terrified that it will happen again and I can't seem to function even now that I'm feeling so much better. What helped me were a hydrodistention, and DMSO treatments, diet modification, time, and the caring and strongest people on this board as well as my Mom and partner. If it wasn't for you guys I really don't think I would of made it. Thank you for your support and giving me hope when no one else could or would. If I can get better after 34 years of this horrible condition I think anybody could. I forgot to mention that I am peeing every 5 or 6 hours and I don't get up during the night. I only take my pain meds twice a day and an anti-depressant to help me sleep better. When I was in the most severe flare of my life last year I was voiding every 5 minutes for about 8 months. Hope is really necessary in surviving ic as well as the people that care for us. I'm still praying though that they make a breakthrough and find better treatments and ultimately a cure.

Mrsi4

[PlainJane]

Thanks for your posts! I didn't mean that success is necessarily 100% symptom free. For me success would be being able to sleep through the night and go back to school. I haven't been able to do either for the past 2 years. That would be success for me.

[mom_in_ma]

I lurk on and off these days because I do feel normal nearly all the time now. I was diagnosed just about three years ago and the first year was really rough. But, I found what worked best for me and just got better and better. I still have flares occationally, every few months or so, but I can get myself out of them quickly by using tums, xanax, and allegra. To be honest, I can eat just about everything now...including tomatoes.

That said, I too hung on to every thread of MelanieJ's story and hope she is doing well these days. She hasn't posted in ages. I also read VMs stories too...thank you!

[Betsie]

Oh, I am a definite success story! I attribute that to Elmiron. I have actually chimed in before on that, but since Elmiron doesn't work for many, I am not sure it has always been met with enthusiasm, or is encouraging to a lot of folks here.

For me the diet does not seem key, BUT...being a GI patient, I do think I naturally avoid many foods that may also be troublesome with IC. for me, even the "no-no" foods seem to be okay as long as they are in moderation.

I never had any other meds in my Tx plan, so it made it easy for me to zero in on what did/does help. I went from 300 mgs daily of Elmiron, to 600mgs daily (following a second opinion with an IC specialist and researcher).

From onset (1/02) to now, I probably spent 2 years with my worst symptoms. Pain, ending up being the bigger one for me. The increase in the elmiron seemed to be the kicker for me, and I am now down to 200mgs daily, though my URO gives me enough to tweak it as needed. So far, I barely need to increase that.

Unfortunately, I have had two other autoimmune diseases added, and they are the ones that keep me frustrated. Hopefully I will get answers and remission very soon.

My opinion looking back was to stick to one RX before adding any. I at least knew how it helped. I know that for many this is difficult, but I think knowing what is actually helping you is key to zeroing in on your success and failures.

This is a good post, I think for most of us, we tend to post according to specific issues, and forget to let people know we are doing well.

I hope this will be filled with many similar stories. :smile tee

[vm]

Mom in ma : Wonderful to hear how well you are doing. Thanks for updating us - I'd missed seeing you around. :)

[kadi]

I'm not 100%, but most days I feel pretty good.

When I got IC, I could not sleep more than 20 min at a time, was voiding 50+ times a day, had burning, sharp pain, could not eat due to nausea from pain (lost 14 pounds in 2 weeks), had trouble even riding in the car, barely made it to work each day, could not wear pants (only loose dresses), could not exercise, had trouble even walking sometimes.

It took awhile, but I found a treatment combination that works for me. I could not take Elmiron (it made me worse), which was very disappointing, but have found a pretty good routine in the meds listed below my name.

Now, I work full time without difficulty 95% of the time, can drive up to several hours, can do several forms of exercise (elliptical, rowing machine, yoga, walking), wear jeans, travel modestly (I go to residence type hotels with suites with kitchens), go to the movies, work on crafts. I sleep through the night most nights, do not routinely take painkillers (maybe a couple times a month, I need a Darvocet), and most of the time, feel pretty "normal". People tell me I look good again too, which is a bonus! (I turn a very odd color of gray when I'm flaring.)

Hang in there, I'm a lot better now & expect to get even better, as more is learned about IC.

One thing about IC is that it does take time to work out your individual treatment plan, but most people do find things that help them & feel a lot better!

[Oxana]

I like the positive stories too.:)
For me vm's story and Traceann were my sources of hope.

I want to say that Traceann was my ruler and is my best friend who helped me go through my dark days for feeling so much better. I can't believe it is 9 month already!

Tracy, I appreciate everything what you did and still doing for me...I really can't tell you how grateful I am by having you!:kissing:

I want to say to everybody, please believe that it IS hope to feel better. Just hang in there and try to be patient and what is very important - think positive.

[akrose]

I would say that since mid may 2006 I have begun to feel relief of the urethral burning. Been on Elmiron 300mg bid, and ativan 0.5mg at bedtime, with Elavil 15mg at bedtime, all meds now for 6months and I think it is all finally working. I can walk long distances, drive long distances, sleep thru the night and get up 1 time to void. I tried the bikeriding friday and I am not sure about that yet-caused some discomfort. Started swimming again and that has always been good for pain relief. I also take Cytotec 200mcg bid, citracal bid, n-acetyl glucosamine (for vulvodynia) bid. Alot of water, no juice except pear juice, no sodas. No french fries with ketchup. So maybe Dr. McCammon was right when he told me that I had to give Elmiron time to work at the higher dose. When I am pain-free I can't even remember what the pain feels like, and I feel like the whole urethral burning urgency feeling was a bad nightmare. Tried to have sex, and had to take a pain pill, ativan and pyridium plus and an ice pack, so still can't do that. Anyway, it feels good to do the things I love again. I pray the same for all of you. And Kara- I will say a special prayer for you, about the phantom urethral pain- that God would heal you from that.

[traceann]

Oxana, you are way to kind and sweet!!! :) I am just so happy I could be of help, you are a wonderful friend!!!

HUGS!!!!
;)

[Oxana]

Thank you sweetie!
Hugs and love!:cat:

[karan keaster]

Marsi - I tried to send you a PM but your inbox is full...

[PlainJane]

I am not a success story YET but hopefully I will be in about 2 years time. That's how long treatment for chronic Lyme takes.

Here's an update on what I have been up to....

I saw a Lyme specialist in New York City on Nov. 13th and he strongly suspects that I have chronic Lyme disease and babesia (a co-infection of Lyme). The tests for it aren't that reliable and I tested negative but have many of the symptoms (air hunger, extreme fatigue, nightsweats, excessive sweating during the day). Babesia is a malaria-type infection.

As well, the specialist examined me and found a classic Bartonella rash on my arm. It has been there for many months but nobody knew what it was. Well he knows. Bartonella is another Lyme disease co-infection.

So now I am on treatment: Cedax (cephalosporin antibiotic), Azithromycin (antibiotic), Mepron (anti protozoal for babesia), Diflucan (for yeast) and Intramuscular Bicillin antibiotic injections. I am also on treatment for my thyroid because now it is low. As far as I know my cortisol levels are going up but I will have to have that re-checked soon.

The Lyme specialist said that Lyme seems to love the female bladder. It can really irritate the bladder. He has treated thousands of patients and has been treating Lyme for 15 years so I'm sure he knows his stuff.

~plainjane

[Briza]

I love reading about people's successes. Jane, I'm happy to hear your drs may be getting you on the right track. :)

I have a new success of my own, in case anyone hasn't seen my thread in the romance/sex forum, please look it up at the link below. It just shows that success with IC and vulvodynia and PFD comes in so many different forms...:)

http://www.ic-network.com/forum/showthread.php?t=34044

[jezebel]

Plain Jane,

Who is the Lyme specialist that you saw?

[PlainJane]

Thanks you guys. Jezebel I sent you a PM with the doc's name :)

~pj

[lledoux_2000]

I too, feel successful. :) I stopped Elmiron - tired of the expense, the side effects, just plain tired of taking medication....I monitor my diet and do fine most of the time.

I wish everyone a very Merry Christmas!

[jsd1970]

HI EVERYONE. I HAVE BEEN FEELING MUCH BETTER THE LAST FEW DAYS
I DON'T KNOW WHAT IS IT IS THAT IS HELPING ME, BUT I HAVE A COUPLE OF IDEAS OF WHAT IT COULD BE. I HAVE UP THE MG OF ELAVIL TO 50 I SLEEP VERY WELL NOW AND ALSO MY JOB HASN'T BEEN QUITE SO STRESSFUL LATELY. I HAVE BEEN EATING PRETTY MUCH WHAT I WANT WITHOUT GOING TO CRAZY. ALL I KNOW IS IT FEELS GREAT AND I HOPE IT LAST. IT IS ALSO SUMMER TIME AND THERE ARE NO KIDS TO TAKE OR PICK UP FROM SCHOOL!!:smile tee SOMETIMES MY IC SEEMS TO FLARE MORE IN THE WINTER. DOES ANYONE ELSE NOTICE THAT?
THANKS, DONNA:grouphug:
Dear Donna W, I live in Houston, Missouri and am having trouble finding good doctors who can help -- can you please tell me who you see? Thanks so much!!

[vm]

I don't know why it was deleted - didn't know it was. I do know that when we delete something we typically send an explanation of some sort to the author. Maybe there was a glitch of some kind - or someone forgot to let you know what happened?

[debbielynn]

I have been on Elmiron for over a year. I actually take two a night. I used to take two in the morning as well but made me feel out of it (I think) I also take Neorontin (Gabipenten) 1 a night. I take Singulair at night and clariton in the morning as well as lots of IC friendly vitamins I purchased through Even better now. I have been drinking Aloecure juice for about a week. Off and on feeling better. Just so afraid to get my hopes up. ANY food is a problem for me especially if I eat one bite to much. I don't eat much at all. I drink lots of water. How long does the Elmiron take to work?? And has anyone ever heard of trying a detox/Clay foot bath?? I have been trying the tums and take prelief as well. I want so much to feel better. I would just love to have a slice of pizza or a nacho with mild salsa! A small bowl of chile. Haven't had it in sooo long. Guess those days are over?? But even when I eat bland food still have problems. Oh I take vesicare too. Anyone have anymore suggestions??:help:

[mmat]

After a year of running around trying to get someone to listen to my problems without throwing an "overactive bladder" med at me and being miserable I lucked out and saw an ad in a local paper. There was a clinic that addressed "women's health issues" and they were taking new patients. I called and got an appointment, but had to wait for two months to get in. It was worth the wait. I was having so many different problems, that I was a mess. Something was hurting, burning, itching all of the time. I felt like I was dying a "death of a thousand cuts". The Dr was amazing. I have been treated for all of my complaints and am almost back to normal. For my bladder problem, she did instills twice a week for a month then put me on Elmiron. I was worried about taking it, from reading some of the posts here, but have had no side effects at all. I usually can sleep now all night with out going, which is a nice relief. I was up three or four times a night and was very uncomfortable when I would go to bed, that it was hard to fall asleep. I still have to go just about every hour or two during the day, but have always had to go quite frequently all of my life. I also take Desert Harvest aloe caps, glucosamine with msm and Quercetin but am trying to see what I can slowly stop taking. I still rely on Prelief when I am having something spicy, but for the most part, can eat just about anything. I do have a few triggers, but even if I eat them, can calm things down by drinking 1 tsp baking soda in a cup of water, or 1/2 tsp in 4 oz. I was such a mess a year ago, alto, never had some of the horrible symptoms that I read about in some of the posts, just was very uncomfortable most of the time with one thing or another. I also found that I had fibroids and had my uterus removed, which helped some of the "full" feeling that I was having. There is hope, just keep trying one thing and another. I still read the posts to keep up on what is helping people. It would be nice if there was one thing that helped everyone, but our symptoms are all so varied it would be hard to come up with one pill. Try to keep a positive attitude and keep trying things, that's what I did.

[andcohen6]

I don't have a success story of my own yet :bonk: but my Elmiron does help a fair bit, just need to get rid of all my pain meds. Great post, I love reading about everyones success & what they have found that helps them. Unfortunantly alot of the meds mentioned here aren't here in Australia either so thats a pain.
There have been so many wonderfull people here that have helped & inspired me over the years, sooo many tears of pain but also many tears of joy when you find out someone is feeling better & getting their life back.
Good luck to everybody in finding the treatment that is right for you & thank-you for all the great stories.
Andrea :grouphug:

[dmarie]

I was diagnosed about 2 years ago and I've come a long way too! My uro did 10 weeks of instillations and then slowly added Elavil, Elmiron, and hydroxizine. I've been on all 3 meds for about 1 1/2 years. I also did physical therapy for my pfd. I still get bummed when I flare, especially after a 2 week period of no or low-level symptoms. My flares are no where near as bad as they used to be. In fact, when I was first diagnosed....it was all just one very long flare with no real relief in symptoms. Now I definitely notice fluctuations. I just wonder if there is any hope of improving any more? Do I just wait and hope that time will continue to heal my bladder with my current meds and diet? Do I try to add more meds? Did anyone notice continued improvement beyond the 1.5 -2 year mark of being on Elmiron? Or is my bladder as good as it is going to get with my current "cocktail"?

Dawn

[debbielynn]

I am asking the same question! Will we ever be symptom free completely?Does the bladder even heal? Have you ever heard of the detox clay foot bath? I bought it through evenbetternow and have not tried yet but I am going to in the near future. I have good days which I cherish but mostly bad days. Never really consistant and there isn't any pattern. I do notice mornings are best for me. It is just when I eat. By evening much worse. Normal IC friendly foods or bad foods doesn't really make any difference. On a good day is when I only drink tap water and hardly eat anything. I always have a lot of pressure. I have been taking vesicare and urist-c. Doesn't help a whole lot with the urgencies. Main thing eat as little as possible and drink lots of water and take meds. Hoping one day that will change. I am very active with my work, excercise regularly and try to keep my spirits up. Luckily I have a very understanding husband but sometimes I take it out on him when I'm on edge. Also I do think my body is very high acidic. Trying new things to possibly change that. I'm still taking the aloecure. Hope it keeps working! :woohoo:

[dyno]

Erica,

My story goes like this. As a teenager back in the 70's I started struggleing with frequency. My folks took me to the Dr. who then referred me to a urologist.

This was in late 1974. After trying some antibiotics and not getting any results during my Christmas vacation from school, I was a junior in high school, I was admitted to the hospital for a cysto-hdro and pylegram(sp).

My hydro was done with me awake with just local anthestic. It was very painful but did show I had IC. I then stayed in the hospital a few more days for about the only treatment available then, Silver Nitrate installations. It hurt so bad but it must have helped some.

I swore though to myself and kept the promise for many years to come, that I would never go to another urologist after all the pain from that treatment.

So I just struggled through many years and pregnancies with learning to deal with the frequency. I did go to nursing school and did manage somehow to make it through classes and clinicals running to the bathroom every chance I had.

Then after I had my own kids I ended up working from home, so that helped a lot.

Back then the importance of diet wasn't really mentioned. Sometime in the late 80's or early 90,s, I read an article in a magazine about IC and I thought that is what I had. My parents had never given me a name of my condition so I really didn't know for sure. I then requested my medical records from that procedure and found out.

Then in the early 90's, I had a true bladder infection. I went to my family Dr., and he tested my urine, found it positive and put me on an antibiotic. Due to the IC, my bladder was slow to recover and I swore I wasn't getting better. So I went back and he said I had cleared up and if I was still having trouble I should go to a urologist. I was hesitant but did it.

So I went to this new urologist, tell him my history and he had this attitude that because of how young I was when I was diagnosed that there was no way I had IC. He wanted to do all kinds of testing and I said no and went on my way and on with my life as I had been.

By this point I had learned some of the importance of diet and made the changes and that helped a lot. I had also learned how other things triggered symptoms.

Fast forward to 2002. Up to that point I had just tolerated the frequency and had really given up on Dr.s treating my IC. I had an emergency gall bladder surgery and of course my bladder gave me a lot of trouble. My surgeon, one of the best in the area, told me I needed to get into a urologist and he would help me find one after I recovered a little from my surgery.

So a few weeks later I got into a new urologist. By this point, I was involved here on the ICN and was prepared. I knew what I wanted to try and went in with literature in hand. I showed him my medical records, filled out his questionaire, talked to him and by the time we got finished he said " I can diagnose the vast majority of IC by just talking to them." He said with my records already and the history I had, he just wanted to send my urine out and check for cancer cells. Not that he expected it he said, but he had to do it.

Then he asked me what I felt like I wanted to do. I wanted to do the least invasive treatments that I could since most of the time I could tolerate life. So I went on Vistaril(Hydroxyzine) 25 mg. every night. Sometimes I take another one during the day but my nightly dose is one I won't miss.

Over the course of the next few years while I still lived in the area, we tried several other medications, including Elmiron, but the Vistaril is all I am taking now. I watch my diet and I also take Glucosamine/MSM, which I started a few months ago and I really think it is helping a lot.

I have reduced the stress in my life and that helps too. I still watch my diet. I have to say I am doing better right now than I have done since I was diagnosed 33 years ago. We went to a Bday party this afternoon and I went 3 hours without going. I travel hundreds of miles in my pickup every week for work. Sometimes going several hours between breaks.

I am sorry this is so long but I really do want to give people hope. It just takes time to find what works for you. Good Luck!:)

[Smokey]

Here goes my story:

i started to get ic symtoms started just after a single uti at 30 years old, i will be turning 35 in september. i went from specialist to specialist because they couldnt diagnose me they ended telling me it was in my head, in the end i started to believe it(THEY WERE ALL MALE SPECIALISTS!!!) Then in the end i went to a female urologist just based on symtoms alone she diagnosed me with ic, i didnt know whether to cry or be happy. she was right i did have ic after having a cysto/hydro and my biopsy was negative also.

i tried endep which made me feel worse. then the next treatment was to do instills, which i didnt want to do i feel they are to invasive especially because she was going to use dmso.in australia we are so limited with medications, knowlegde, procedures etc. we do not have enough specialists that know about ic.

then in the end i was doing my own research basically treating myself. i went on the desert harvest aloe vera, which has saved me. of course i stick to the diet. then i added pure msm/glucosamine and i take a probiotic every morning. if i need any pain medication, not that i need it my local gp will prescribe it. i have not seen my urologist in about year and half. ( and i hope to never see her again) cross my fingers. i can honestly say i am remission.

i am just grateful that i am not in my pain anymore. i take one day at a time.i pray everyday that i am not in pain. i work full time again, enjoying life.

[debbielynn]

I appreciate all of your stories so much. Sometimes I feel so alone and it truly helps to know I am not! Although I'm currently taking Elmiron,vesicare,Uracet-C,Glucosamine/MSM,a number of vitamins that is for IC(I did try the Desert Harvest Aloe capsules) I may give it another try; but I'm interested in Hydroxyzine. I've noticed alot of you sware to it. I do take Claritin during the day, singulair at night, along with Neorontin(Gabepentin). Tell me is this an allergy medicine? How do you suppose it helps. Do you guys have alot of food allergies like me? Oh I am still trying the Aloecure which I think is cooling things off! Thanks!!:bonk:

[justice4j]

Debbie,

It's good to be on BOTH Hydroxyzine (atarax) and Singulair. Atarax is an antihistamine and Singulair is an antileukotriene. (sp) I've read research articles that the anti leukotrienes - Singulair and Accolade can help with IC if it is allergy driven.

I would take Singulair if I could - gives me h/a. I have asthma so it would serve a duel purpose if I could take both.

I'm going to try Dextroamphetamine sulfate. I had to resort to seeing a resident/attending pscychiatrist at a local uni med cntr. Not one of my doctors will touch the stuff. It is a big hassle, especially since I don't really need a psychiatrist, I need pain relief, not treatment for schizophrenia, etc. Don't get me wrong, I have all the empathy in the world for anyone suffering from psychiatric disorders. My only psych disorder is some depression secondary to coping with this.

If you read posts by searching "Dextroamphetamine" w/o typing in sulfate, you'll get more hits. NGazerro and SamandMichelle's posts are particularly encouraging. There are others whose names I can't think of due to pain and late hour.

I couldn't see the psychiatry people until August 19th.....so here I sit suffering because doctors who trust me are still afraid of this drug. I even have one doctor who very willingly Rxd 180 Valium 10 mg. for me to use intravaginally. It does help, but has drawbacks that I hate. I also am taking Elavil and hopefully will be able to get off that stuff sooooooon. I hate it. It dries me out so much along with the antihistamines....some mornings I have a slightly bloody nose.

I hate dealing with this disease beast. Sigh......

Hopefully after August 19th I will have a positive story to tell here.

[patsagan]

I've tried Elmiron, but I didn't like the side effects such as hair loss. Now I take 2 Cystoprotek in the morning and 2 in the evening along with Vesicare at night and I only need to get up once to go to the bathroom. I used to have to get up every 2 hours. I'm also eating most anything I want. I notice when I have watermelon my symptoms get worse. I'm able to drink one cup of low acid decaf in the morning with no problems.

[justice4j]

Pat,
Do A search for NGazerro's posts. She just posted about her "flare" from watermelon. She was tested and found to be allergic to it.
Thought you'd find that interesting.

Glad you are doing well. It's encouraging to see some success stories. Success to me is being able to eat and drink mostly what you want w/o pain and no pain everyday. In that same success category, I would include being able to exercise.

Having to be on a very restricted diet to achieve no pain, to me, is not the same thing.

I have CystoProtek and think I will try 1 capsule X2 per day. I think I reacted with diarrhea to the 2 capsules X2 a day. Maybe 1 at a time will work.

Thanks,

[patsagan]

Janet,

Good luck. I know it was the Cystoprotek that helped me because I stopped taking it just to see what would happen. My frequency came right back. I buy mine on Amazon.com and I signed up for the automatic delivery and saved alot of money. It's only $29/month.

Pat