In complete remission - for now.

[ICLori]

I have no idea how long this will last, but for now Amoxicillin has put me into a complete remission.

I must have had a UTI all this time that they just couldn't see, or maybe it was the original UTI because you know they never once cultured it out to see what antibiotics it would respond to.

You know how, when you get a real UTI, they are supposed to culture it to see what antibiotics work? Well they never did that for me. And I got a UTI that never got better. And from then on my urine was never really clear - it was always somewhat dirty but sometimes docs would say "infection" and sometimes "no infection" but my urine was always far from sterile.

Anyway Amoxicillin probably wouldn't work for anyone else on this board but for some odd reason it has worked for me (so far.) Hoping my remission lasts, that would be awfully nice if this cured me of whatever I have/had (not so sure anymore that I have "real" IC - because IC is not supposed to respond to antibiotics - now my body is responding, and that means it was something else. What else, I don't know, but something else that just felt like IC but wasn't.)

Another thing that is making me happy - saw the move "Ray" (boy it was a great movie, I recommend it!) and bought the soundtrack. Ray Charles had so many great songs. Isn't good music just a great gift in life? I'm grateful that I'm not deaf because I sure do love music.

Blessings, Lori

[ICNJess]

Hi Lori,

I just wanted to say congrats on the remission! I hope it stays that way for a long time sweetie!!!

Big hugs,
Jess

[ICLori]

Thank you so much! I sure hope so too, LOL! :)

Blessings, Lori

[vm]

That's awesome! :) Are you still on the Lupron, too? How long have you been on the amoxicillin?

[ICLori]

Yep, I am. What happened is this - I was given 10 days of Amoxicillin by my dentist because I had to have a tooth pulled. I told him I was already on Doxycyline for my ocular rosacea. He said, if you want, if your eyes are acting up, stop the Amoxicillin after 7 days and go back to Doxy - but don't take any Doxy in the 7 days you are taking Amoxicillin.

So I took the Amoxicillin for 7 days. I started taking Amoxicillin about 2 weeks after my first Lupron shot. All of a sudden, I got much, much better. Wasn't sure if it was Amoxicillin or Lupron helping me but figure it was Lupron because all my docs told me, antibiotics are useless for IC and I believed them. Then I stopped Amoxicillin after 7 days and started back on Doxy because my eyes were bugging me (stinging). Within a couple of days, I started getting way worse again. So I stopped the Doxy and took the 3 days of Amoxicillin that I had left. I again went into remission. By this point, I was starting to think maybe it was the Amoxicillin, not the Lupron, since the Lupron was in my system the whole time. If it was the Lupron helping me, whether or not I was on Amoxicillin should not have made a difference - I should have been well the whole time, right? After using up my last 3 days of Amoxicillin, the symptoms came back again. So I was starting to figure it out - on Amoxicillin, symptoms gone. Off Amoxicillin, symptoms come back.

So I got ahold of some more Amoxicillin for the time being. Went back on it. Boom. Remission again within 24 hours. Amazing. Have been on it about 4 days now. Total remission. I imagine if I stop taking it, the symptoms will again come back. How long will I have to keep taking it? Don't know, that's something I gotta hash out. But I am starting to believe more and more in the theory of bacteria causing some cases of what looks like IC. Not all, surely, but maybe some of the cases. My case in particular.

It's pretty easy to see that it's the Amoxicillin helping and not Lupron - because like I said if it was Lupron helping me then I should have been in remission this whole time - but I wasn't - only when on the Amoxicillin.

I am so happy that I discovered this by accident. If the dentist had prescribed cipro or something else, I might never have found this antibiotic that is giving me a remission.

I'm even hoping maybe for a cure. Or a remission of years at a time, like the one poster who talked about the docs in Mexico keeping her on antibiotics for months, which gave her a 5 year remission.

Blessings, Lori

[ICLori]

P.S. I should say, that I don't plan on getting a third Lupron shot. I got the second one while I was still trying to figure out if the Lupron was the miracle or the Amoxicillin - but I'm very certain now that it's the Amoxicillin and the Lupron is doing nada for me except giving me hot flashes.

[ICLori]

You know...I'm sitting here thinking to myself...I must have had a genuine UTI for the past 4 years. That's why it went away with Amoxicillin. An untreated UTI for four years! Sheesh, no wonder I was always running a low-grade fever....

Blessings, Lori

[vm]

Wow... I hope you figure it all out and find a way to keep feeling good!!!! :)

[sleepyangel30]

I hope your remission will last forever :)

[Iris]

So glad to read about your remission, that is wonderful, and hope it stays permanently for you, way to go Lori, great news, hugs Iris. :woohoo: :grouphug: :flower:

[judyw]

Hi,
I have not been to this site for awhile. Things have changed a lot on this board. Hope I can figure it all out.
I can't say that I am in remission but have been doing better than use to.
I am on methadone and morphine orally regularly and it has helped better than anything else had.
While I was reading some of the posts here I noticed Lori had stated something about her "eyes stinging" so I would like for Lori to email me or let me know what her diagnosis is for her eyes. I have been having burning and stinging in my eyes for some time now to the point of pain at times. Thought it was allergy reaction but now do not know.
Glad you are doing better Lori and hope that there are more out there that have found help with this awful disease.

[green_the_fish]

Hey Lori. I'm glad you feel better.
I hope that your long-term UTI theory is correct, then you can be cured :)

[purpleviolet]

My doctor tells me that some antibiotics are also anti-inflammatory. Hope your remission goes on forever, too.

[jaime15]

I'm dancing a jig for your remission... :dance: :elvis: :dance:
Although I'm not a great dancer......I hope this great feeling you have stays great! :smile tee

[Jean12]

Happy Remission :puppy: :cat: :dance: May your remission days be many.
Jean

[Dianne]

IC Lori, can you give us an update? Dianne

[Rosebud]

I totally agree with Lori, I too have had success with Amoxicillin & believe IC is really just a big long UTI that for some reason doesn't show up in urine tests & needs a longer dose of antibiotics to really eradicate it.

Please see my posts under the Success Stories or Antibiotic boards for my story.

[ICLori]

Hi, Dianne, well....I still think I am better off than I was...but...I have good days and bad days. And I still have irritation at night, enough to interfere with my sleep. Between the hot flashes/night sweats I'm getting from Lupron and the IC symptoms, not getting such great sleep!

I've been told it takes several months on antibiotics before you are really better. That's if it works for you at all. So....well, I guess I'll keep going and wait and see. I do feel I am better than I was before the antibiotics, though, so I'm somewhat encouraged. I just wish I was 100% better, LOL.

I find that I also need to stick to the non-irritating foods and drinks and avoid any activities that normally cause me to flare. So I still have to be careful. Maybe someday if I have results like some have had, I can go back to eating and doing whatever I please.

I'll keep you guys updated, every couple of weeks or so, on how it's going. I've managed to avoid any yeast infections etc. so far because I'm eating yogurt each day. (Yogurt doesn't irritate my bladder, I don't know why, but I'm able to tolerate it.)

Blessings, Lori
P.S. Thanks for your story Rosebud, it gives me some encouragement...

[vm]

Antibiotics may be a solution for some people, but I absolutely disagree that IC is only a UTI. The research just doesn't support it.

[anxious one]

ICLori, I am SO glad for you that you are getting better :woohoo: and I hope that the amoxycillin does work for you completely. However, I also do not agree that IC is really "one big UTI" that can be cured with antibiotics in every case. Since my first big flare (UTI?) where no bacteria was found to be the cause I have probably had over 20 coarses of a/b's including both short and long term. I also had great results the first time I was prescribed amoxycillin to treat a suspected UTI (it wasn't) and I thought HURRAH!!!!!! However, the 2nd time I tried it thinking I would get the same results I had a an awful, horrendous flare that ended me up in the ER! :mad:

I guess my way of thinking is that if antibiotics were the solution (in my case) and there is some level of bacteria in my bladder IT WOULD HAVE TO BE DEAD BY NOW!! :rolleyes: Also, how do you explain the Hunners ulcers??

Like I said, I am so glad that you may have found a solution but I certainly don't think it's the answer for every case of IC. :)

Hugs,

sara

[ICLori]

I'm not really sure it will be my solution....to be honest I only know that I'm doing better on them than without them. It may be because I tend to always have a certain amount of bacteria brewing at all times, "dirty" urine so to speak. Maybe that low level of bacteria has been very irritating to my already irritable bladder, and so getting rid of those bacteria has maybe made for less irritation.

I'm hoping that if I can keep my bladder from having any UTI's for a few months, maybe my bladder can repair itself and somehow reverse this disease process. It's a long shot but I figure it's worth trying, especially since I can feel a difference between when I'm on Amoxicillin and when I'm not.

Today wasn't such a bad day symptom-wise, and I'm grateful for that. I'm hoping that I will keep getting better and better.

Blessings, Lori

[kadi]

Dear Lori,
I'm soooooo glad you're feeling better! Will be praying for your continued health & healing.
Love,
Kadi

[purpleviolet]

My urologists says antibiotics are anti-inflamatory and that's why SOME people feel better. But maybe you do have a hidden infection like Fuggazotto thinks we all have. Good luck.

[TexasHoney]

Congraulations. :woohoo: I am glad to hear you are feeling better and that you have found something that works for you. I hope your remission is permanent.

:) TexasHoney

[Scomegys]

Lori, from all of the research I've done and on my own personal road to remission you are not far off the mark of IC being a long standing, pervasive, and severe UTI. That is my opinion from my personal experience, connection with research team, and my own personal research. Amoxicillin is a common and effective antibiotic that some people are using to cure IC because they are finding that those with IC have gram positive bacteria in the bladder walls. This bacteria is not found by standard cultures that the doctors will give you to test for typical e.coli strain UTI's. However, I also found that there was more to it than bacteria, in having IC. If you want to find out more information feel free to Pm me.

[shennan]

question?

have you had a cystoscopy under hydro?

if so, did it show hemrrohaging?


thanks!
hope you are feeling better.
shenna :)

[ICLori]

Hi, Shenna, I'm not completely 100% better but I'm definately better than I was so I consider that a small miracle in itself.

I've had two cystoscopies with hydrodistention under anesthesia - one 4 1/2 years ago when I was first diagnosed, and one last summer to see how my disease was progressing. It's progressing at a fast clip - my capacity under anesthesia is now less than 500cc due to scarring of the bladder. Both cystoscopies showed the glomerulations typical of IC, as well as extreme vascularity that is the hallmark of IC, but no Hunner's ulcers.

Blessings, Lori

[shennan]

wow....
mine is 400 cc under hydro.
did they tell you what it was back 4 1/2 years ago?

yeah, i have no ulcers, either.

just lots of scarring and hemmorhaging....

:confused:

my lower back is killing me. my abs hurt--flank pain.

mid-level back pain, too.

i took a klonopin yesterday. it seemed to work, but not today.
i took a darvocet and klonopin today.
am in the middle of my cycle right now.

i made an appointment to see my ob/gyn.

i want to have her check my hormones.

my physical therapist touched my right ovary and my leg flipped up in the air. it hurt really bad. my uterus was very sore also.

lori, are you doing any instillations?

thanks...
shenna
:)

[shennan]

oh, are you on social security?

i am still waiting for a reply on my reconsideration.
i sent three doctors letters.......

[ICLori]

Hi, Shenna, unfortunately all your symptoms sound like a bad case of IC - all the back aches, etc. Except for the ovary thing - I haven't heard of that one before and it makes me wonder if you have a cyst maybe on an ovary? I'm very glad to hear you are going to the doc to get that checked out. I hope it won't be anything that can't be easily fixed.

I'm not on SSN - lucky enough to have my hubby supporting me (thank you, lord) - I wish you the best of luck. I have seen that when people are really persistent (keep applying , get lawyers involved, etc.) they almost always win their cases.

I'm sorry you are hurting so much, I hope that your doctor will be able to help you and that you'll soon be feeling better.

Not doing any instillations right now. One doc (a fellow, or "junior" doc) was going to set me up with athome instillations of heparin and I was really excited but for some reason the senior doc said "no." Maybe because I've had UTI's following procedures, maybe they think I'm prone to UTI's when catheterized (which is true enough).

I had a really bad night last night and this morning was flaring bad too (urgency/frequency) and I kept thinking, what did I do wrong? Well started my period today (after stopping Lupron, my period finally came) so there's my answer, LOL. I always flare for a day or two before my period, no matter how careful I am.

So I have some days when I think, oh, I'm in a remission, and other days and nights when I think, oh, I'm not making any progress at all. I think that I am slowly getting better overall.

I don't know what my capacity was on my first hydro because there aren't any notes in my file. Apparently they lost the notes or never put them in, don't know, but anyways normal is 1,200 so....shrug...I have something like less than half the normal capacity - you have 1/3 the normal capacity...not so good.

Blessings, Lori

[shennan]

yup, my bladder is not good.
my hubby works, too, but it is getting expensive.
we have some bills because i have not worked for about 4 years.

i did have a cyst removed back in 7/2001. also had some light endo removed and the ob/gyn cut some scar tissue from my vesicoureteral reflux operation, from 1969 and 1970.

my pt rubbed my scar last week and it felt like i had surgery the next day.
it has been tough this past week. the pain is really bad.
i am still going to the :toilet: every hour--down from 2-3x an hour.
although, the ic has a life of its own and i can go 4x in an hour and 1 time in an hour--it varies. waking up about every hour at night, too.
i am tired and cranky most of the time.
i am ready to start taking the darvocet every day.

i reason i am applying for ss is that if i don't do it now, i may not be eligible down the road. and who knows if i will ever work again.
i feel miserable most days. i hardly can fold the clothes.
i have no energy...
it bassically sucks winkie.....

sorry for venting....

shenna :(

do you take elmiron?

what do you take? anything?
thanks.... :)

[ICLori]

Hi, Shenna. I take Elmiron, which doesn't seem to help me anymore, atarax, which also as far as I can tell helps either none at all or only a little, Amoxicillin which does help but I still have symptoms, Singulair which helps but I still have symptoms, TUMS for reducing acid in my urine, Aleve which helps a bit but not enough, etc. You get the picture. Percocet at night when I can't sleep.

I hear you about feeling miserable and lacking energy. I really do not like this IC disease, I hope a cure comes soon for all of us.

Blessings, Lori

[shennan]

same here....

mostly miserable....

even with heparin once a week.

physical therapy twice a week.

pain meds, muscle relaxants, aloe vera, and other antioxidants...

:(

shenna

blessing back at ya! :angel:

[BethW]

Lori, I am so happy for you! I have been taking Augmentin and it is the only thing that helps with the IC pain. I dont care what people think. I know antibiotics work for me.

I hope your remission lasts and lasts....take care of yourself!

[ICLori]

Hi, Beth! Actually I'm kind of out of remission - I don't know, I have times when I'm better and times that I'm worse. But I always get some irritation at night, which is driving me nuts...

Maybe I will get better over time?

Blessings, Lori

[anxious one]

Lori- I'm sorry to hear you are feeling worse- :grouphug: I hope that you feel better again soon. Are you taking the amoxycillin several times a day or just nightly?? Just curious... you wouldn't want to be on a high dose for too long otherwise it will bring down your immune system and while the IC might be better you'll pick up other stuff!! :rolleyes:

Hugs,

Sara
P.S Do you take acidophilus with it?????

[ICLori]

Three times per day - I did try to wean myself off them recently and I got increased symptoms when I tried it so I figure my body isn't ready to get off them yet.

I eat a cup of yogurt every day and so far (knock on wood) have not had any problems with yeast.

Blessings, Lori

[kadi]

Hey Lori,
What kind of yogurt are you eating? I saw it on the "usually not okay" list & have been afraid to try it. You're okay with it? Any particular brand that's better for you?
Kadi

[ICLori]

Hi, Kadi, for some reason I am able to tolerate any and all yogurt without any twinges from my bladder. I have no idea why I'm able to tolerate it, while so many IC'ers can't...I guess it's just that each of us is different and this disease is a big mystery. I wouldn't recommend trying yogurt for anyone with IC - I am too afraid it would set off a flare. But for me, because I don't react badly to yogurt, I'm able to eat my favorite, Dannon yogurt.

Blessings, Lori

[ICLori]

Not really sure why, but my bladder has been alot better the past few days. I'm only going about 10 times during the day and about 3-4 times at night, which is very good for me.

It could be the antibiotics finally starting to make me better, or the Singulair having a cumulative effect, or none of the above (who knows with IC?). Anyhow I'm glad to be feeling better during this very busy holiday season, and hope that my fellow IC'ers are feeling better or will be too, soon.

Blessings, Lori

[poetgirl]

Antibiotics can have an anti-inflammatory effect, which may be one of the reasons you're feeling so much better. I used to get a lot of UTIs, and although I finally broke that pattern (no UTI in over a year, knock wood!) I still experienced urethral burning and bladder/plevic pain for a while. Sometimes I still experience burning and urgency but it's not too bad and it will only last a day or so. However, I shudder to think what another UTI will be like and if it will trigger another flare that seems to last forever...

[songbird7]

There is research you can check out on the rest of this site. They have found some sort of rogue protein or something found only in the urine of IC patients. This could be a cause and if this protein that hurts the bladder can be stopped, the body stops making it, we could get a cure. If I won the lottery for sure I'd give money for research in this area if an animal would not be used for testing.
Everyone with this frustrating disease, you are in my thoughts and prayers always.
Warmly

[andcohen]

What a fantastic time of the year to be feeling so great. I have been reading up a fair bit on the use of antibodics & it seems the could paly a part in helping some of us ICers.. Thanks for sharing your story, if it wasn't for people like you putting these things out there how would we ever know???? I hope it continues to work for a long time to come.
Enjoy Your Christmas & New Year.
Andrea :flower: