Still doing better but not quite all the way...

[ICLori]

Well, I think I learned a lesson - even though I was feeling much better on Amoxicillin, I can't eat or drink anything I want and not pay the price, LOL.

I think that even with antibiotic therapy, I will still have to take a very active part in trying to heal my bladder by avoiding things that irritate it. I had some fairly mild (compared to what I often get) irritative voiding symptoms last night and the night before, so my bladder is telling me that things are not 100% better yet. It's not like when I was in my 20's and had a UTI and took my antibiotics and was better within a day. I can see that even with this treatment, it's going to be back and forth a bit. I will see what happens...

I tried taking an adrenal glandular, too, that I had around the house. You know me, I try anything if I think it has any chance to help me. Anyway, I bought a bottle of that when I read that article about how adrenal glands in IC patients are smaller than normal. Or IC cats I should say. But I figured it probably applied to humans too. I took some, but gave up trying it when I came down with a UTI because I figured it wasn't helping me if I was still getting UTI's even with it.

But I tried it again because - I don't know, it was sitting there, I thought maybe now that the germs are killed off, maybe it will help...and within a couple of hours my bladder felt better. Might totally be a coincidence, though. Or it could be just something else I ate or drank that calmed my bladder.

Anybody else ever tried adrenal glandulars? I found them at my local vitamin store.

Well, I have heard from others who have tried antibiotics, that it's not necessarily a 100% cure within a few days, that really it takes longer for the bladder to heal and you still have to be careful not to irritate your bladder, etc.

Anyway, I was kind of bummed that it wasn't an instant miracle, because I was doing so well for a week or so and then boom, I had a couple of nights of some irritation just when I was hoping those days were gone forever.

Blessings, Lori

[twiggy]

That cat article sound pretty good to me, too, and now I want my hormones checked too! I am with you. I would try anything to put this stupid thing in remission. I have my good days and bad days on antibiotics. I am convinced I need more than antibiotics. Just haven't found that other something special. Hang in there. If the bladder has been irritiated for a long time, it will take awhile to heal. (((((( sending an encouraging hug your way)))))

[kadi]

Hey Lori,
I remember when you were so sick! Be gentle with yourself. This illness takes time to recover. I get frustrated too when I realize that I'm still very diet-limited & feel uncomfortable. But one thing that helps is to remind myself not to compare myself to pre-IC days, but to how sick I was a year ago, or even 3 months ago. Just do one thing at a time, okay?

I think it's fabulous you're doing so much better--you were obviously very very sick - it will take time to get well... Just do what you can to encourage the healing process-eat very nourishing food & do some gentle exercise.

I'd be cautious about adding anything in that your doctors are not aware of, in part, because the antibiotic sounds like it's working, but also just to be sure to keep their support. Definitely let your doctor know about the adrenal glandulars, okay?

Take care & I'm glad that you're doing better in spite of the setback,
Kadi

[ICLori]

Thank you so much, Kadi. Actually I told him when I first went on them. He said "As long as it doesn't bother your bladder..." He's of the opinion that OTC herbal stuff probably won't help any, but won't harm anything either.

Found another thing to help that irritation feeling, too. I'm still getting that off and on even though my bladder is getting better bit by bit on the antibiotics.

I know that people must think I'm nuts, the things I am trying to try to figure out how to live with my IC. It's just that the common things don't work for me, so now I am down to either invasive stuff (bladder removal, interstim) or other stuff that is pretty experimental in and of itself and has some risks (Cyclosporin for instance.)

Me, I'd love to try every single pill or instillation type thing that has helped even a few IC'ers. But my docs have been reluctant to let me try anything that is not their particular "favorite" treatment. My husband rants about this all the time. Like me, he thinks if a study is done that is promising, what is the harm of trying it? (Like the antibiotic therapy, Singulair to treat IC, lidocaine jets to help manage the urethral pain, Flomax, Bextra or Celebrex, etc.) We both think it would make sense to try those things first before surgery, even though the studies are small and maybe it wouldn't help after all.

The reason I'm frustrated is that, even though I'm getting better on the antibiotics (fewer voids overall, less pain) I still have this irritation that is - I don't know how to describe it, it's almost like a tickling sensation, but not quite? - that continues to be there some of the time, especially at night, that is just enough to interfere with sleeping. Now, perhaps in time antibiotics alone will take care of that - don't know. But for now I am trying this and that hoping that something will end up being a reliable answer to that "mild irritation" feeling.

I'll keep ya'll updated.

Blessings, Lori

[Katrina]

I don't blame you for being frustrated but I am happy you are helped at least somewhat after so much work finding help. Thanks for keeping us updated!!!!!!!!!! I hope you get better and better and than all better!:) :kiss:

[ICNDonna]

I'm so glad you are feeling better.

Warm hugs,
Donna

[ICLori]

Thanks, guys! I'm so impatient, I want to be better right away - I get really frustrated especially since I still feel some irritation at night. I have this fear that I'll be stuck like this, that I won't get any better now. I guess I should have some faith. All the stories I've read, about people who have tried long-term antibiotics, including the people here who have tried Doxy, show that people don't get 100% better right away, that if it does work, it takes some time...Lord, give me patience, and I want it now, LOL!

Blessings, Lori

[windwalker]

Hi Lori, Lol, I am w/ya on the impatient part, want it gone NOW ;). You are feeling better than sayyy, two months or so ago? I have two more days of doxy and I am done w/the month regimen. For me, I feel better than I did before the doxy, but its going to be more of a wait n see how I am off the doxy. Keep us updated on how u feel and what's goin on!
Dawn

[ICLori]

Hi, Dawn! Yeah, I do feel better (have longer periods in the day when I'm without irritation, etc.) than I did two months ago. But I still react to certain foods (soda, wine), and I still have some irritation at night. Not bad, not as bad as before, but unfortunately even the slightest amount of irritation at night seems to interfere with my sleep big time so I'm very anxious for that to go away soon.

I've been reading more about Lyme (I can't wait to be tested for this, I called and made an appointment) and interestingly enough, Lyme patients treated with antibiotics often go through about 4-week cycles where they feel somewhat worse for a week or so, coinciding with the life cycle of the spirochete. If I have Lyme (big if) that might explain why I felt great for a couple of weeks and now I'm having some irritation again.

I sure wish I knew some magic trick to make this go away entirely. I wish I knew a magic trick that would work on everyone! Sometimes I wish I had become a scientist (not that I have the brains for that at all, but...) so that I could learn more about IC and experiment. At least then I wouldn't feel so helpless about this disease, at least I'd feel like I was doing something, you know? I guess it's because I'm so impatient, I want to be well now and I want the IC puzzle solved now, LOL!

How are you feeling? It looks like you are feeling somewhat better than you were before the doxy? I hope that you continue to get better and better.

That book I read, the one chapter about cystitis in general, (the book by Dr. C. I mean), said he puts his patients on Macrobid for three months then he sees them again to see how they are doing. It didn't say in the book but I'm guessing that's because it takes that long for the bladder to repair itself after the bacteria are gone? I have heard that IC bladders are very slow to repair themselves. Oh and he said that he advises his patients to avoid sodas (just like the IC diet says!) and also hot sauce, anything that burns in your mouth he said can cause irritation of the bladder and you might not even realize it at the time.

I hope that this Doxy regimen can be used to "cure" some patients that otherwise might be diagnosed as having IC.

I've been having this thought turn around in my head - I wonder what "true" IC is? If a person is diagnosed with IC but then turns out to have Lyme and it's really Lyme causing the bladder irritation, is that "true" IC or just a disease that looked like IC at first but turned out not to be "real" IC? And the same with endometriosis, if that is causing symptoms that make a doctor say "IC" but later they realize it's really endometriosis on the bladder...and the same with an infection that wasn't caught for some reason...or hypothyroidism that can cause a bladder to misbehave...I guess there must be a million other things...pelvic floor dysfunction...Anyway, if a person is diagnosed with IC but they figure out later that it was one of those illnesses or disorders, and then they are able to "fix" it, was it really IC at all?

Sometimes I wonder if the IC category isn't filled with a certain number of "other" conditions that just kind of get the IC label put on them but it turns out that it wasn't really IC after all but something more easily curable? But if it ends up being something curable, does that mean it wasn't really IC after all?

Blessings, Lori

[windwalker]

Hi Lori, I havent read up at all on Lyme, tell me more (msg me if its easier ;) ). Yes, I do feel better right now ON the doxy, I worry about how I will feel OFF the doxy. I wish I could just stay on it continuously, but I know that is not good for me, doesn't hurt to wish though. I feel worse in the evening, not pain for the most part, just lots of "going" , I do that in the morning too, but its not as "urgent". Ya know, if after doxy, I stay feeling like this, its more manageable than what I had before. I am not waking up to go through the night (I just wake up in the middle of the nite now only because my body has gotten used to that lol), I can hold it longer, on occasion more than four hours, mostly two to three, I can handle that :) .
A previous uro tried me on Macrobid, I was on it for just over a month and got worse and worse, he told me to just stay on it and did nothing else, hes not my uro anymore ;). I wouldn't have minded staying on it if there were other things being done. (Elmiron, elavil, anything) Ok, gotta pick up my daughter from school, she had a growth spurt and grew out of two pairs of jeans, must shop!!! ;) Talk to u soon!
Dawn

[ICLori]

Hi, Dawn, Lyme seems to be one of those diseases it's good to eliminate as a suspect, especially if you live in a Lyme-heavy area of the country. Here's one site that kind of describes some of the symptoms fo Lyme so you can see if it might be worth it or not to get tested for it:

http://www.kaiserpapers.org/alamo.html

Believe it or not, some people stay on a low-dose of Doxycycline all the time - I'm one of them - it's used for acne and ocular rosacea (I have the last one) and so I take one capsule every day. All antibiotics do have risks but sometimes people do stay on them continuously for different conditions.

I am still getting up to go about 5-6 times per night - not as bad as it was (I was up to 10 or more times) but still enough to be somewhat aggravating. Plus I am getting night sweats like crazy (maybe from the Lupron?) and that messes up my sleep some. So I am hoping that eventually I will become more comfortable in time.

Hope you have a good day and have fun shopping! It sounds like your symptoms are becoming more manageable and that is a very good sign. If you do get worse again off Doxy, maybe you could ask your doctor if you could try it for a longer time, or take a low, maintenance type dose? I don't know...your doctor will probably know what to do...I am hoping you will just keep getting better and better until the IC is completely gone forever.

I sure wish I knew some good trick to make IC less active at night.

Blessings, Lori

[Babs RN]

Lori,
Happy Veteran's Day!!!!! :bow: I am improving slowly but still feeling kinda gross. No worries though. I'm thinking a weekend Target fix might help. Have a wonderful weekend my special IC sister and I hope the pain remains tolerable.


Hugs,
Barb


PS They delayed Chris' deployment until Jan :woohoo: !

[windwalker]

Hi Lori, thanks for the article. I don't live in an area w/a lot of ticks. But wow, the things that can happen from that!
Yea, if I end up feeling bad again after getting off the doxy, I will talk to the doc about either a longer regimen or maintenance, we shall see.
Did the shopping, got daughter a pair of jeans, poor thing goes through the same things I went through (still do) to get jeans, they fit in the hip area and huge in the waist, mind you shes only 8, but I always had that problem too, glad theres jeans out there for her that have elastic that connect to buttons on the inside, helps the waist of them sit closer to her body :) take it easy and talk to u again soon. Girl you wouldnt believe how long it took me to type this, past week I have been just a typo monster LOL!!!!
Dawn

[ICLori]

Thanks, Barb, Happy Vet's day to you, too! :) I'm so glad you are getting better but I wish you felt all the way well. I'm hoping that your surgery can be scheduled as soon as your infection clears all the way and you are feeling strong enough. Is there any news yet on when the hydro/cysto and repair work can be done? I am thinking you will be feeling so much better once that is done.

Blessings, Lori