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  • #31
    Any updates on LDN from anyone here?

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    • #32
      I am curious too what is LDN?
      my name is Katie, 22 yr old mother & nursing student. I want to be a writer and midwife.

      I have severe IC w/ hunner ulcers and urethritis with lesions ENDO, chronic pelvic pain, PFD adhesions, scoliosis, arthritis,migraines,asthma chronic pain.

      Mother to a beautiful little girl. She has my heart and she's everything to me. Thinking positive and consciously untensing tense muscles helps a ton!!!! physical therapy also helps a lot.

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      • #33
        It is being used to help many afflictions, cancers, MS, IBS, Crohns, etc. without side effects IF at the right dose..

        You can google it and find the official LDN site.. God Bless ..

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        • #34
          heard radio show dr takes LDN

          I was listening to Dr. Whitaker's radio show (1/18/2009) which can be found on the net and he said he and others he knows take it but he didn't say what for. Someone had called in who was taking it and was getting insomnia so he recommended melatonin and valerian. He mentioned some people get vivid dreams from it. I read about this LDN in some alternative newsletters. I'm not sure who would prescribe it, except for an MD that is alternative and that is hard to come by. PV
          I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

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          • #35
            I agree with you mcdoll!!!!! If the drug works for you...then GREAT!!!!!! If not, like you said...atleast you tried. Good luck.

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            • #36
              Side effects

              While only a small percentage of people taking this medication have side effects, the most common is depression.

              It's a medication that is most commonly used to help people who are alcoholic or addicted to narcotics; in many cases it helps with uncomfortable withdrawal symptoms.

              Donna
              Stay safe


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              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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              • #37
                Ldn

                Is anyone still using this drug?

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                • #38
                  No

                  I am not...I had an IBS flare from it, my pharmacist refused to give it to me without it being compounded with other things - Like lactose, which set off my IBS.

                  He said I wouldn't be able to take the taste of the straight drug...So i stopped taking it without any solid findings regarding the efficacy as an IC treatment...

                  Onset of symptoms 1/04 after laproscopic appendectomy
                  Diagnosed with prostatitis 3/04, again 6/04, again 9/04, went through various cycles of anti-biotics.
                  Self diagnosed with PFD 6/05, received PT on and off for a year with good results but recurring symptoms.
                  Self diagnosed with IC 2/07, officially diagnosed via potasium test 3/07

                  Current meds:

                  Uracyst
                  Benedryl

                  Having great results with Uracyst

                  Alex

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                  • #39
                    LDN and IC

                    mcDoll did you use LDN?

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                    • #40
                      I have been taking LDN for the past 4 months and am really noticing an improvement. I still have IC but it has lessened a lot!! I feel more optimistic than I have since I got this disease 8yrs ago. I still only take half of the 4.5 pill...because if I take a whole pill I am extremely jittery the next day. When I do get symptoms from IC, even if they are severe, I don't get as depressed over them and they are almost always gone the next day. I am also taking progesterone to keep my Estrogen lowered and elavil at night, both of which I have been on for the past 3 yrs.

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                      • #41
                        That's exciting news!
                        I was hoping someone would give a positive answer to my question

                        I know just about LDN, read it on a weblog in my country, the Netherlands
                        The woman of the weblog, Marja, who knows so much about LDN and uses it herselve told me that if you do not have high blood pressure you can try to take 3x500 mg D-Phenylalanie on empty stomach.
                        it keeps the endorphine longer during the day and helps with pain.

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                        • #42
                          Trying Low Dose Nal Trexone

                          12-8-10 Wednesday: At 10:45 I took one LDN 4.5MG as prescribed and never went to sleep that night. It was like drinking 12 cups of coffee and eating a whole box of See’s candy. I was almost too dizzy to get out of bed and urinate which I needed to do about 10 times. It seemed to go straight to my brain and I had screaming brain chatter and a very loud buzzing in my ears. All of my organs began to hurt and I became nauseous and developed a headache.
                          I had terrible jitters most of the next day, but was able to take a nap in the afternoon.
                          Since Nal Trexone is used for ending addiction. I had the feeling that I could never take another Xanax which I usually took a very small amount each night for sleep and quiet mind. It was like all the brain chatter that had been repressed by Xanax had risen up to run itself out at lightening speed. I also had vivid hallucinations of bright colors and and sounds.

                          12-9-10 Thursday: I did not want to take the drug ever again, but my husband suggested I take a quarter the amount with a couple of meletonin. I agreed and for a while the symptoms were much less, and didn’t last as long. I listened with head phones to a gentle talk by a spiritual teacher. I fell asleep about 2 hours later and didn’t get up more than twice. After waking in the morning I had a since of deep relaxation but my pelvic floor symptoms are now flaring. That usually happens when I get stressed out, and this drug has brought on a lot of stress. From the IC network I learned that it takes time to adjust to it, but nobody told me that.

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                          • #43
                            LDN for IC

                            I think you started to high

                            I started on 1,2 mg and now, after 5 months I am on 4,5 mg

                            When I started the first time I got a flare.

                            Then I got botox in my bladder and started the LDN again
                            This time everything went better
                            After the first dose my nose allergy was gone
                            When I was on 2,5 mg the jointpain in my shoulders got less

                            Now the joint pain is totaly gone, the muscle pain is gone, my bloodperssure is better(lower), my vision is better;I can now read the paper without glasses
                            I had soms blood tests done and my liver values are better, my kidney values are better ass well and so is my thyroid
                            Now I need less thyroid medication

                            I cannot say if it helped for my Interstitial cystitis because when I started the LDn I also started botox
                            So the IC is beter now but it is not gone
                            Occasionely I take Tramadol about 12 hours after my morning dose LDN
                            dr Skip from Skips pharmasy told me that"s possible

                            I take LDN in the morning so my sleep is not disturbed and it helps me just ass well as the night dose
                            Last edited by ICNDonna; 12-12-2010, 02:40 AM.

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                            • #44
                              Ldn

                              I started on Low Dose Naltrexone the end of Sept. I started on 2 mg and upped it every 2 weeks, now I'm on 4 mg. I was feeling great, was having 2-3 days with no pain. Well I had sex and my pain has been horrible for about ten days. I think it must be PFD. I am still going to stick with the LDN and hopefully can get out of this flare!

                              Suzanne

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                              • #45
                                Ldn

                                It took forever for me to find out what a "quick reply icon" was. I did quit taking the LDN. I like hearing it helps with all kinds of painful symptoms. I may start again when the memory of my first attempt is dimmer.

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