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Just checking in/an update

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  • Just checking in/an update

    Still doing great with the d-mannose, hoping I'll continue to do well with it.

    I find that as long as I take a good heaping teaspoonfull (maybe almost two teaspoons?) each morning and then again before I go to sleep, I don't have any bladder pain or symptoms, I can eat/drink what I want, and I sleep through the night usually not even waking up once to urinate, and my capacity amazes me (I had no idea my bladder could hold so much urine, LOL!)

    I really hate paying so much though. I just bought a big 250 gram container (equal to five of the smaller size jars) for about 95 bucks if you include shipping. Expensive! I'm hoping that will last me about two months but it might not last quite that long. I feel like that's a lot of money. So I'm really happy with the results, and I'm not having any side effects that I can tell yet, and my doctor says it's okay for me to use, but I wish wish wish it didn't cost so much.

    I also found out d-mannose has different effects outside of just stopping e coli from attaching to the bladder walls. Apparently (I've been reading) it has antiinflammatory effects, some immunomodulatory effects (they've been using it on patients with chronic autoimmune diseases and a few researchers are reporting some success) AND it temporarily increases sialic acid (that IC'ers have less of than normal, the stuff that works as a force field to keep irritants away from the bladder lining) in the bladder. So, I have NO idea which of these mechanisms is working for me. All I know is, I haven't found anything else that works for me, and this seems to work for me, and it's not killing my kidneys or anything, so even though I hate paying so much, I guess I will keep buying it. Maybe it will come down in price someday. I mean, it's worth it, I'm just a cheapskate is all. I buy nearly all my clothes in the thrift store, if that's any indication, LOL. So for me, 95 bucks is like, a summer's worth of clothing, LOL!

    Anyway, if you do some google searches, you'll see all this information about d-mannose. Try to read only the studies that aren't attached to advertising sites. Anything an advertising site says, take with a grain of salt.

    I can tell you it hasn't cured me, that's for sure. If I miss even one dose, I can feel the irritation starting to creep back. So it's just kind of a remedy for me, something that helps me so I keep taking it.

    I have no idea if this would ever help anyone else here. My IC seems to be so odd - I didn't respond to any of the medicines that others have been helped by, so I really think I have a "weird" case of IC, if that makes any sense. I think I have heard from a couple of people saying they found this soothing to their bladders too, but I've also heard from others who said it flared them or else didn't do a darn thing for them one way or another.
    I'm not sure what to think about d-mannose. I just figure, heck, it's working for me, doesn't seem to be harming me, might as well keep taking it.

    P.S. My thyroid levels are finally right - they have me on 75 micrograms of synthroid still - but my free t-4 is still at the very edge of normal (very low) and I still feel kind of sluggish and lazy, and 90 degree weather feels exactly right to me (not too hot or anything) so I still feel as if I'm having some hypo symptoms, you know? I wonder if it just takes the body awhile to "catch up" after the levels are straightened out. Maybe in a month or two I will feel less lazy.

  • #2
    Oh Lori, Thats Great!..

    I know you have been though hell trying to find some kind of relief. I am glad you have found something that helps..I truly hope it will continue, I have done a little reading on that and dont know how true it is but it says it helps the bladder to repair or build new lining..Does not say anything about curing it just that if you continue taking it. It will help in repairing it..Who knows you read and here sooooo much..But I honestly wish you the best of luck...(((((((((hugs))))))))))))


    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


    • #3
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        Hi lori.
        I am takng the D'mannose also right now also. I get the manno Max brand as it is all natural. I was on it for a year before I got Dx with IC. I had urinary frequency back then from a med I was on and the Dmannose really helped. I stopped taking it when I started getting bad, when I kept having awful bladder pain and that is when I was Dx with the IC.
        I have been getting frequent UTI's lately and decided to try the Dmannose again to see if it will help at all with preventing the UTI's. I did notice that I had somemore pain after I took the Dmannose though. I guess I will see how it goes.
        I am glad you are getting some relief with it.


        • #5
          Thanks much for the update Lori! Glad your doing so well!!!!!!!!
          Very glad you thyroid is doing so well as well!

          Like you have heard people say both, but in the world of IC if something helped someone it probably hurt someone else...what else can we do but try?
          Faith, Hope, and Love,

          I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          or find me on facebook
          Be the Miracle! & Pay it Forward!

          [email protected] please contact me...I am here to help!


          • #6
            Lori...I am so happy for you. I hope this continues to help and that you get better and better. (((hugs)))

            Shopping??? Did someone mention shopping? I'll get my hat... ;-)

            Where I can be found most days.

            Link to the ICN Patient Handbook:

            Link to the IC Diet:

            IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


            • #7
              Wow, it sounds like that is your miracle! I'm so happy that you found something to make you feel better. If we ever have any extra money with all the copays and meds I'm already on maybe I'll have to try that!

              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus