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Hi, everyone! I'm actually doing really well off CyA!

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  • Padstow222
    replied
    Re: Hi, everyone! I'm actually doing really well off CyA!

    Hi Lori I know this is an old post but can you give me some info on cystitis cystica please I have just been diagnosed this

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  • purpleviolet
    replied
    a bit confused

    I wonder why the docs put you on an immunosuppressive drug if you had infections all the time? Wouldn't that increase infections? Had you tried d-mannose before trying cyclosporine? Lori could you mention or PM me with brand of d-mannose you take? Mine isn't so expensive. I try to get my docs to even consider d-mannose or research it and they just shake their heads. I ask them if it can interfere with a UTI culture and they don't know but worse don't care to find out. They can't relate to anything unless it is synthesized drug. D-mannose (a sugar) occurs naturally in fruit and sometimes is extracted from certain trees I think. I never head of cystitis cystica! I'm so glad you are doing well and that your posts have helped others, I'm sure.Thanks. PV

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  • Trishann
    replied
    Lori that is great news, this must be like a miracle drug to you after what you have been through. Lori I don't know how you came across this d-mannose but I am so glad you found it and it is doing wonders for you. I am so happy for you and that you finally got some relief from that awful pain. Lori thank you for letting us know you are doing well. It just bless my heart to hear this good news about you.

    Take care, Trishann

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  • ICLori
    replied
    Wow, thanks everyone! I'm still doing just great bladder-wise! (I've been in Santa Fe for a week, long story - actually was there for five days then trapped in Dallas for two days because of storms and the Memorial Day weekend traffic, no planes...)

    It could be that it was the Prozac/Trazadone combo - but I've used those before and the last times, they irritated my bladder rather than helping so I don't know....I have heard of people getting pain relief from various antidepressants, though.

    I noticed a couple of weeks ago that if I missed a dose of d-mannose, I got bladder-pain again. Then when I took my dose, within a few hours, I was pain-free again.

    Now I don't need pain meds at all anymore (and I just went through my period, which is usually my worst time, before and after my period I mean) and I don't have any twinges or frequency.

    I'm starting to think that the cystitis cystica I was diagnosed with was the cause of my pain and maybe even the cause for my bladder to look like it had IC. In other words, I really think I had CC all along and not CC plus IC. My records show I had CC - but the doctors did not treat me for that. The treatment for that generally is to use antimicrobials (antibiotics usually) for very long periods of time (one year to five years in the studies I read) to keep the bladder free of infection long enough for a new lining to grow.

    Anyway, I thought - don't really want to do antibiotics (and docs don't want to prescribe those for me) but I do have this d-mannose sitting around...doc already said a few years ago it was okay for me to take it, so I don't feel I will be harming myself by taking it...

    It's probably a mystery why I'm feeling so much better, it could be any of the things everyone has mentioned or lots of other things, but I have it in my head now it's the d-mannose working for my cystitis cystica that's making the difference, so for now I'll continue on it. It's so nice not to be in pain, and not to need the Ultram.

    I'm sure d-mannose wouldn't do much of anything for regular IC like you all have, but I do have diagnosed CC (usually that is caused by very long-term chronic infection) and the treatment for that is keeping the bladder UTI-free for a long time, so...well, it seems to work for me anyway. I wouldn't think that anyone here would have a reason to try it unless they have chronic UTI's, CC, and their doctor recommends it. And I always think it's really important always to check with your doctor first before you ever take any supplement, no matter how harmless it might seem to be. Especially with this IC stuff, we don't need anything that might mess our systems up in any way! My doctor said it was okay for me to take this, though, so I feel okay about taking it. Of course I'm trying to watch for any potential side effects, though. I haven't noticed any yet that I'm aware of, but I'll still be observant for side effects or anything bad.

    Could it be my bladder was just hurting from a chronic infection rather than IC? This really makes me wonder. I know that I've always been so much better on antibiotics - the remissions I've had, have always been in conjunction with antibiotics. Even with CyA, my remission didn't start until after the dentist prescribed me a big huge dose of Keflex antibiotic because of gum surgery I had (crown-lengthening.)

    Well, I'm keeping my fingers crossed that what feels like a remission to me (no symptoms that I can tell, I sleep through the night without pain meds, no frequency, don't have to avoid foods or drinks) continues.

    I'm kicking myself that I didn't stick with the d-mannose when I first decided to try it. I stopped because I didn't want to pay 40 bucks a month. And I wasn't sure it would work. My bladder was better on it, yeah, but then when I'd stop, the pain would come right back. I thought, oh, it probably won't work, and I can't just stay on it forever, it's too expensive....but lately I've been thinking, you know what? Even if I pay 40 bucks a month for this stuff, it's worth it that I'm free of pain. There are people who pay lots more than that each month for medicine. Maybe I shouldn't be such a cheapskate.

    Oh, I flew to Santa Fe mostly to see that area (around Los Alamos) and Albuquerque because there's about a 50% chance Dave will be stationed in one of those two places next - I kind of wanted to see where my new home would be. Dave had to go TDY (Army trip) there so the hotel was already paid for, and he was able to get me a ticket for cheap - so it didn't cost us all that much. And it was good to be able to see where we might be moving to next year. Sometimes it's hard with the military, moving into a place you've never been before...it's always nice to kind of get a look before you move so you can kind of anticipate things.

    Blessings,
    Lori
    P.S. I'm sorry I haven't been on lately, I've decided to just use the internet once per week, because I don't get anything done around the house/hobbies etc. when I'm on the computer too much - seems best to just limit my time. So anyway, I miss a lot of posts I think this way. On the other hand, I'm getting my spring cleaning done!

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  • sacausa
    replied
    That is great! It might just be the combination of the treatments you're using now.... and if IC is autoimmune, then it's not unheard of to go into spontaneous remission.... Hopefully in our lifetimes their will be some research that will finally give us the true IC miracle drug (if there even is one!). All I can say is that I undoubtedly have you to thank for my own remission because I would never have thought of trying cytotec if I didn't read your posts.... THANKS!

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  • purpleviolet
    replied
    Hi Lori -

    So great you're off the immnosuppressive stuff. Perhaps it really gave your bladder time to heal. Did you read about that herb forskolin that injected into mice cause their bladders to eject e-coli from the lining so that anti-biotics could kill it (or theortically d-mannose could wash it out.). I'm trying it for one month but wouldn't take on long term basis until I know about it. My IC is very bearable for weeks and then sometimes I flare. I'm taking other supplements too but don't know really what does anything. Continue with your good luck! PV

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  • Kara29
    replied
    ((((Lori)))))

    So happy to hear that you are doing well of the the CyA. I hope that you continue to do well on limited medication.

    Kara

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  • Moonheart
    replied
    You know, it's really exciting to see more and more of us find answers and hopefully we can share these answers with others and they'll be able to use them to make their lives better and less painful. This is a blessing indeed.

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  • dancemomof2
    replied
    Yippppeeeeee Lori, glad to hear from you and that your doing so well.

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  • Moonheart
    replied
    Oh that's wonderful Lori!!!

    Do you think that the Prozac and Trazadone have anything to do with it? I've heard people using those for nerve type pain and other things. I wonder if it's helping even if your using it for other stuff?

    Awesome!

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  • Trishann
    replied
    Lori that is great. I was really concern about you being able to get off CyA. I know you must have been terrified not know the end results, but I am so grateful that you are doing well without it.

    That is a mystery about what is working for you. I definitely would keep doing what you are doing and hope it continues to do well for you. Just glad to see you feeling better.

    Sending hugs, Trishann

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  • SharonA
    replied
    Lori...This is such good news. I hope this continues for you. (((hugs)))

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  • ICLori
    replied
    Thank you both so much!

    Blessings,
    Lori

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  • leelee88
    replied
    Oh Lori I am so happry for you.. Iwas really worried that the CYA might of damged your kidneys.. But thank God your are fine..I hope you comtinue to have good days I will keep praying that you do.. ((((((hugs)))))))

    Ronda

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  • GriffsMommy
    replied
    That's great news Lori:woohoo: I know that you've had a really rough time from reading your posts and it's so nice to hear that you're feeling so much better. I hope it was really something as simple as a back adjustment that you needed this whole time and you'll continue to feel better.

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