Announcement

Collapse
No announcement yet.

LDN

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Dear Faith,

    I have not forgotten you, I have been re-writing my LDN review to be more concise and informative. Bouncing it off a few close friends I have been getting some push-back on the intro sooooo... just for you, other believers, or anyone interested... if I may I post just my intro today:

    "Naaman was a military commander in ancient Syria during the 9th century B.C. His story is told in 2 Kings Chapter 5 of the bible. He had leprosy and at the suggestion of a captured Jewish girl sought healing in Israel. Naaman was willing to pay a fortune for relief from his disease and left Syria with six thousand pieces of gold. When he arrived in Israel at the home of Elisha the prophet, Elisha didn’t bother coming out of his house, instead he simply sent out a messenger who told the commander to go and bathe in the Jordan River.

    Naaman was angered by the lack of respect and childish instructions. If the Jordan River could heal leprosy it would have been known throughout the world. So Naaman turned and went away in rage. But his servants came near and reasoned that if he had been asked to do some great thing, pay a costly amount, or undergo a difficult process to get rid of leprosy he would have done it. Why not try something which doesn’t take much effort, can cause no harm, and costs so little? Naaman relented. He couldn’t have expected much as he waded into Jordan River and dipped under the water seven times but the result was miraculous; he was healed of leprosy.

    The water of the Jordan River has no known power to affect leprosy; there is no scientific basis for believing the river has ever benefitted any disease. Naaman’s healing was supernatural if the bible story is believed. The river was only an agent for healing; the healing came from elsewhere.

    Remarkably, there is a low-cost, non-toxic drug with similarity to Jordan’s water in that it has no direct effect on disease yet can play a pivotal role in improving health. Low Dose Naltrexone, commonly called LDN, is an agent which prompts the body’s own chemistry to affect illnesses. LDN initiates a natural response in the body’s immune system which alters the course of disease; it is non-toxic and has a proven safety record.

    We have no scientific data on the supernatural healing of Naaman but we data on hundreds of people with MS (pwMS) using LDN. LDN has demonstrated positive benefits for the majority of pwMS taking it and there are sporadic cases (Linda Elsegood in the UK) of improvement as dramatic as Naaman’s restoration of health. How do we know? Because human trial, clinical practice, and patient testimony prove it. LDN has a track record of safety and effectiveness which is reviewed here".

    Thank you for your interest in the fascinating topic of LDN. Seek and you shall find is as immutable as the law of gravity. Keep seeking this knowledge and experience, Faith. Honestly, I believe you are so close to an exceptional experience. Don't allow anything or anyone to stop you.

    You can do this, Faith, I believe in you.

    Sincerely Yours

    Comment


      #17
      Thanks again, Myoak. It might not be worth the effort. As I said, I've been unable to find someone to rx the low dose; and, I don't wish to purchase the higher dose and divide it.
      ~ Faith
      MSWorld Volunteer -- Moderator since JUN2012
      (now a Mimibug)

      Symptoms began in JAN02
      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
      .

      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

      Comment


        #18
        Originally posted by Mamabug View Post
        ... I've been unable to find someone to rx the low dose; and, I don't wish to purchase the higher dose and divide it.
        Dear Mamabug,

        One reputable place I have sourced for LDN is Profound Products. They sell 4.5mg caps. LDN is harmless. In the study below involving 215 PwMS taking LDN over a 7-year period, 60% reported a reduction in fatigue, 60% stated that LDN stabilized or improved their disease and 75% of the patients reported improved or stabilized quality of life.

        I will post excerpts from the most comprehensive LDN study I could find in medical literature. The author is Dr. Anthony Turel, Penn State and is titled:

        Low Dose Naltrexone for Treatment of Multiple Sclerosis

        A Retrospective Chart Review of Safety and Tolerability

        Journal of Clinical Psychopharmacology • Volume 35, Number 5, October 2015

        Quote, "Three clinical trials of LDN in MS have been conducted and report that LDN increases the quality of life of MS patients.13–15 Cree et al 14 concluded from a trial of 8 weeks that 4.5 mg LDN daily was a safe therapy that improved quality of life, whereas Sharafaddinzadeh et al13 reported safety after 17 weeks of treatment and recommended that longer trials be conducted to evaluate efficacy. Gironi et al15 studied primary progressive MS patients treated with LDN for 6 months and reported increased endogenous opioid levels in the patients and improved MS. The LDN treatment of patients with other autoimmune diseases including Crohn's disease and fibromyalgia has demonstrated safety and efficacy of the therapy.16,17 A major symptom of MS is fatigue,18 which is one of the many characteristics that patients seek to alleviate. Improvement in fatigue was cited in these clinical studies after LDN therapy, which suggests that there is a potential link between upregulated endogenous opioid systems and fatigue. Gironi et al15 reported elevated β-endorphin levels at 1, 3, and6 months after the onset of treatment, with β-endorphin levels remaining elevated for an additional month after LDN was discontinued. A return to pretreatment levels was not reported.15

        To determine the safety, tolerability, and effectiveness of LDN on fatigue, a retrospective analysis of MS patients prescribed LDN (3.5 mg orally, once daily) by physicians in the Department of Neurology at The Penn State Hershey Medical Center was undertaken...

        The medical records of 215 MS patients, aged 18 to 65 years, seen in the MS clinic for a 7-year period (January 01, 2005 to May 31, 2012) and prescribed 3.5 mg LDN, orally, once daily, served as the study group. The LDN was provided by a licensed compounding pharmacy and cost the patients between US $30 to $50 monthly.

        Prescriptions for LDN were provided to 152 female (71%) and 63 male (29%) patients. The female to male ratio was 2.4:1 and more than 3 quarters of all patients had RRMS, a ratio similar to the prevalence cited in the United States.1,2 Clinically, 87% of the patients had RRMS and 10% had secondary progressive MS, with a mean disease duration of 10 years. The mean (SD) duration of exposure to LDN was 817(512) days; the median period of LDN treatment was 804 days. Individuals continuing on LDN for the course of this study were on the drug for a mean (SD) of 1217 (414) days, and a median of 1254 days. Patients (n = 111) who discontinued LDN received the drug for a mean of 526 days and cited insomnia, nightmares, no change in fatigue levels, cost, and recurrence of MS flares as causes to cease taking LDN. Because LDN treatment was not rigorously monitored as for a prospective study, side effects were based on the patients “perceived” and real changes. Seventy seven percent (n = 166) of patients taking LDN for any period of time did not report any side effects. Six percent of the patients had insomnia, whereas 5% of the patients had excessive dreams. There was no evidence of increased side effects related to other immunomodulators when combined with LDN. No abnormal laboratory results were noted. Of the 215 patients receiving LDN, 57 patients (26%) were hospitalized during the duration of this study; 48 of these patients were hospitalized for non-MS–related events such as infections. No patient was admitted to the hospital because of side effects of LDN.

        Most of the MS patients began LDN therapy because of fatigue. Nearly 60% (n = 128) of patients receiving LDN for any period of time reported a reduction in fatigue with LDN therapy. Fifty of the 215 patients commented that LDN produced no relief from fatigue and 4 patients stated that LDN increased their fatigue levels. Regarding their quality of life and the perception of LDN's effects on MS, 130 patients (60%) stated that LDN stabilized or improved their disease and 75% of the patients reported improved or stabilized quality of life. Nine patients reported that LDN reduced the quality of life, and 8% of the patients had the perception that their disease increased while on LDN but provided no details.

        In conclusion, this chart review focused on 215 MS patients who were provided a prescription for oral LDN. The study reports that a significant number of patients found combination therapy of an immunomodulating agent and LDN to be tolerable and possibly beneficial. Some patients preferred to take LDN as a monotherapy. The LDN did not cause any unexpected side effects, and those reported were previously noted in the literature. The LDN did not potentiate the side effects of the immunomodulating therapies that the patients were receiving. Any hospitalizations in this study were related to reasons other than MS, and there were no hospitalizations due to LDN." End Quote

        If you thoroughly study LDN, you will find most prescribers start those taking it at 1.5 mg for 30 days. Experience has taught prescribers that a lower dose provides the best benefit, overall, when beginning. It appears that 3mg is the most recommended dose used in MS. But 4.5mg is a common dose, also. Obviously, dose can vary without being concerning.

        Comment


          #19
          Wow; thanks for remembering me after all of this time. This is an old thread. I kind of ruled out pursuing LDN since I could not find a doctor willing to rx it for me.

          You have a source. But, how would I deal with the issue of a prescribing doctor?
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #20
            Originally posted by Mamabug View Post
            Wow; thanks for remembering me after all of this time. This is an old thread. I kind of ruled out pursuing LDN since I could not find a doctor willing to rx it for me.

            You have a source. But, how would I deal with the issue of a prescribing doctor?
            That source did not require Rx; which is why I mentioned it. I just now googled Nal-Pro (LDN 4.5mg) and saw how much it cost. That is the product I bought years ago when we first started on it; an Rx was not required.

            Subsequently, it has been so much less expensive to source naltrexone from India. From India it comes in 50mg tabs which I crush and weigh (the dose I use is 2mg). There are appropriate scales for weighing milligrams sold on Amazon, for example, as are empty gel caps to put it in. It is far less expensive doing it that way. Of course, I realize not everyone is comfortable doing that.

            Because I have used them reliably, I mentioned Profound Products for those who may want to try LDN but have trouble sourcing it without an Rx or finding a prescriber.

            Mamabug, I want to encourage you to pursue this because I believe you may get a huge benefit from it. A harmless substance with a 60% chance of having less fatigue and making you feel better is well worth looking into, IMO. The heck with the naysayers. If they had MS, many of them would do anything to try something harmless which had a good chance of working. Persist to succeed!

            Comment


              #21
              Thanks.

              I haven't thought about it for a long time. I may consider approaching my MS specialist about it again. Your article references some clinical studies, which I didn't know about last time we talked. It I may look into your product source.

              I'd forgotten that I'd considered looking for naturopath. Maybe a D.O., to see if I could find someone to rx it. That's another option.

              Many days, I have so little energy to pursue those tasks.
              Last edited by Mamabug; 06-02-2018, 02:20 PM.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #22
                Originally posted by Mamabug View Post
                Thanks.

                I haven't thought about it for a long time. I may consider approaching my MS specialist about it again. Your article references some clinical studies, which I didn't know about last time we talked. It I may look into your product source.

                Upon far-reaching thus, I'd forgotten that I'd considered looking for naturopath. Maybe a D.O., to see if I could find someone to rx it. That's another option.

                Many days, I have so little energy to pursue those tasks.

                I know this is an old thread, but I have just been given LDN by my MS specialist. I am currently taking wellbutrin off label for fatigue and it's hit and miss, and causes my memory to be worse. I also take baclofen for muscle spasms. I am at the point, where after much research, I've decided to use something to stop the progression of my disease. Yesterday, I was given LDN, I am the type of person who prefers to use alternative therapies and I am hopeful this will work.

                Be well.

                Comment


                  #23
                  "Yesterday, I was given LDN, I am the type of person who prefers to use alternative therapies and I am hopeful this will work."

                  Hello,

                  Hopefully, LDN will prove beneficial for you. Be sure to give it a few weeks if you can.

                  I read through your old posts and noted that when you were on an antibiotic you seemed to do better with MS. I personally know one MSer following the Wheldon Protocol who is having very good success following it. Basically, the Wheldon Protocol is a regimen of antibiotics.


                  Also, I encourage you to google, "Minocycline - Old Drug Has New Promise in MS"
                  if the link below does not work for you. Likely, minocycline or a similar tetracycline antibiotic is what you were using when your MS was more subdued. Do let me know if that is correct, won't you? Thank you!

                  http://www.medscape.com/viewarticle/852565


                  Also, I encourage you to use this site and go to Medications and Treatments then click New Treatments, Trials and Research then click The Charcot Project and read the post on page 8 about a young woman with MS who used an anti-retroviral drug (Combivir) with great success.


                  Even though you can buy the same drug (Duovir) she used directly from India, I would only recommend trying it if you have a competent person assisting you making sure you are safely monitored.


                  Personally, I believe there is a good chance that Duovir, which is a combination of Lamivudine 150mg and Zidovudine 300mg (it is called Combivir in the US) will one day be commonly used to slow or halt MS progression. Please note that it is very important to be properly monitored taking this or any other drug.


                  Currently, I am taking Duovir even though I do not have MS because a loved one with MS has expressed interest in taking it and I wanted to both study it and have personal experience taking it before she does.

                  Be certain to have a competent person assisting you if you consider taking this or any other medication!

                  Best of luck to you.

                  Comment


                    #24
                    "Likely, minocycline or a similar tetracycline antibiotic is what you were using when your MS was more subdued. Do let me know if that is correct, won't you? Thank you!"

                    Dear asiel1,

                    I hope you will take a moment to let us know if it was a tetracycline antibiotic like minocycline you were on when you mentioned your MS was not as bad.


                    Minocycline has been used in MS both as a stand-alone treatment and also with approved DMTs such as Copaxone where it demonstrated a significant benefit when coupled with Copaxone compared to Copaxone alone.


                    Your mention of being better while taking an antibiotic was so intriguing I wanted to ask specifically if it was minocycline or a tetracycline antibiotic, if you don't mind saying. But I understand if you would rather not and that is perfectly okay, too.


                    Best to you!!!

                    Comment


                      #25
                      Originally posted by Myoak View Post
                      "Likely, minocycline or a similar tetracycline antibiotic is what you were using when your MS was more subdued. Do let me know if that is correct, won't you? Thank you!"

                      Dear asiel1,

                      I hope you will take a moment to let us know if it was a tetracycline antibiotic like minocycline you were on when you mentioned your MS was not as bad.


                      Minocycline has been used in MS both as a stand-alone treatment and also with approved DMTs such as Copaxone where it demonstrated a significant benefit when coupled with Copaxone compared to Copaxone alone.


                      Your mention of being better while taking an antibiotic was so intriguing I wanted to ask specifically if it was minocycline or a tetracycline antibiotic, if you don't mind saying. But I understand if you would rather not and that is perfectly okay, too.


                      Best to you!!!
                      Yes, I believe it was doxycocline, I was sick with a flare and went to my GP's urgent care clinic. I saw a doctor that I had never seen before. He reviewed my diagnosis of probable MS and gave it to me. It made me feel very bad at first,but after a few days I felt way better.

                      Comment


                        #26
                        Originally posted by Myoak View Post
                        "Yesterday, I was given LDN, I am the type of person who prefers to use alternative therapies and I am hopeful this will work."

                        Hello,

                        Hopefully, LDN will prove beneficial for you. Be sure to give it a few weeks if you can.

                        I read through your old posts and noted that when you were on an antibiotic you seemed to do better with MS. I personally know one MSer following the Wheldon Protocol who is having very good success following it. Basically, the Wheldon Protocol is a regimen of antibiotics.


                        Also, I encourage you to google, "Minocycline - Old Drug Has New Promise in MS"
                        if the link below does not work for you. Likely, minocycline or a similar tetracycline antibiotic is what you were using when your MS was more subdued. Do let me know if that is correct, won't you? Thank you!

                        http://www.medscape.com/viewarticle/852565


                        Also, I encourage you to use this site and go to Medications and Treatments then click New Treatments, Trials and Research then click The Charcot Project and read the post on page 8 about a young woman with MS who used an anti-retroviral drug (Combivir) with great success.


                        Even though you can buy the same drug (Duovir) she used directly from India, I would only recommend trying it if you have a competent person assisting you making sure you are safely monitored.


                        Personally, I believe there is a good chance that Duovir, which is a combination of Lamivudine 150mg and Zidovudine 300mg (it is called Combivir in the US) will one day be commonly used to slow or halt MS progression. Please note that it is very important to be properly monitored taking this or any other drug.


                        Currently, I am taking Duovir even though I do not have MS because a loved one with MS has expressed interest in taking it and I wanted to both study it and have personal experience taking it before she does.

                        Be certain to have a competent person assisting you if you consider taking this or any other medication!

                        Best of luck to you.

                        Thanks for the luck. We all need it. I see Doctor April Erwin, in Baton Rouge,LA. Look her up when you get a chance. She's the best.

                        Day three of LDN. It took a while to shake off the nerves. I felt great today- ( day two) No fatigue,horrible stomach issues- and NO appetite. This afternoon, the muscle spasms were no fun. They come in waves. I read that many people with MS can not take more than 3 mg because of this. I am calling doc tomorrow and asking for 3 mg to see if it relieves the muscle spasms. Other than that, it's a miracle drug--- and one I will never be without. I felt like I did before this journey started-- normal.

                        Comment


                          #27
                          Originally posted by asiel1 View Post
                          Thanks for the luck. We all need it. I see Doctor April Erwin, in Baton Rouge,LA. Look her up when you get a chance. She's the best.

                          Day three of LDN. It took a while to shake off the nerves. I felt great today- ( day two) No fatigue,horrible stomach issues- and NO appetite. This afternoon, the muscle spasms were no fun. They come in waves. I read that many people with MS can not take more than 3 mg because of this. I am calling doc tomorrow and asking for 3 mg to see if it relieves the muscle spasms. Other than that, it's a miracle drug--- and one I will never be without. I felt like I did before this journey started-- normal.
                          EXTRAORDINARY!!!!!! What a stunning testimony! I am thrilled for you!

                          If anyone had posted something like this relative to one of the approved DMTs people would be really inquisitive and doctors' interest would perk right up, I'm positive.

                          Most people taking approved DMTs feel like crap on them and are often quite sick but they won't try a completely safe substance LDN because they can't get their doctor on board. God help us!

                          May I introduce you to lady, Linda Elsegood, whom I have spoken with face to face? I wanted to meet her for myself because her testimony is in the miraculous territory, and I did met her, to see if she was a phony. She is as real and as sincere as my mother. She told me her story of the miraculous effect of LDN in her life. She wrote a book titled, The LDN Book: How a Little-Known Generic Drug ― Low Dose Naltrexone ― Could Revolutionize Treatment for Autoimmune Diseases, Cancer, Autism, Depression, and More

                          Absolutely, not everyone has a miraculous experience using LDN, most don't! BUT SOME DO!

                          The incredible mystery to me is getting people to try LDN is like pulling teeth!

                          LDN does no harm. There is no downside to trying it. Children take LDN safely.

                          I am so happy for you, L !!!!!! If you become so inclined, check out Linda E and email her if you have the urge; she would love hearing about your experience. You can google her name, if you wish.

                          Rolly

                          Comment


                            #28
                            Hello asiel1,

                            Thank you for responding to the question about what antibiotic you were on when your MS improved a few years ago.

                            The tetracycline antibiotics like doxycycline and the newer minocycline have demonstrated benefit in many pwMS as the study I linked earlier demonstrates.


                            I'm glad you previous experience with that antibiotic confirms that study. The reason I mention it is because pwMS, and in particular, pwMS prone to re-occurring infections may want to consider the Wheldon Protocol.

                            I personally know one woman who is having great success treating herself with that protocol. This is someone for whom none of the approved DMTs worked; in fact, the DMTs she tried, Avonex, Copaxone, and Aubagio, made her MS worse, in her opinion.

                            She began securing antibiotics from India and put herself on the Wheldon Protocol over two years ago and has experienced much improved health from what was going on. She also began LDN about one year ago.

                            Hopefully, I am encouraging her to post and mention her experience because doing so may help someone else struggling with MS similar to her situation.


                            Thank you so much, asiel1, for responding directly to my question! You took the time to answer and I am so grateful!

                            It is so amazingly helpful when someone will post about their personal experience with various things they use in the fight against MS.

                            Comment


                              #29
                              Dear Myoak

                              I have followed Dr. David Wheldon’s protocol with great success during the last two years and two months.
                              I was diagnosed with MS approximately 20 years ago and used Avonex, Copaxone, and Aubagio unsuccessfully, so I quit MS meds entirely.
                              I have always been prone to acquiring infections, often serious ones. Therefore, I was very interested in the Wheldon Protocol when I heard about it. I thought even if it did nothing for MS, it might still prove beneficial against my frequent infections. Amazingly, it has proven beneficial against infections and MS! The constant pattern of infections has stopped and my MS has been stable!
                              About one year ago I began taking LDN. I feel better mentally and physically. Relationships with family members have become even better. But the biggest change I have experienced is in pain management. I used to experience terrific pain in my neck. Not every day but most days, and especially if I got overly tired or stressed out. Today, my neck pain has completely resolved. I have not felt that pain for months.
                              I can actually hold a phone and not drop it now. Honestly, I cannot state exactly when the pain left. Honestly, only recently did I even realize that it never comes anymore. Maybe it doesn’t make sense that I can’t be specific about when the pain left, but it is the absolute truth that I never get that pain anymore, ever!
                              I believe the Wheldon protocol and LDN have improved my life dramatically.
                              I am grateful for the person who shared this information with me and I wanted share it with anyone who might be interested in it or in my personal testimony about it. Thank you!
                              http://www.davidwheldon.co.uk/ms-treatment.html

                              Kathy


                              Originally posted by Myoak View Post
                              EXTRAORDINARY!!!!!! What a stunning testimony! I am thrilled for you!

                              If anyone had posted something like this relative to one of the approved DMTs people would be really inquisitive and doctors' interest would perk right up, I'm positive.

                              Most people taking approved DMTs feel like crap on them and are often quite sick but they won't try a completely safe substance LDN because they can't get their doctor on board. God help us!

                              May I introduce you to lady, Linda Elsegood, whom I have spoken with face to face? I wanted to meet her for myself because her testimony is in the miraculous territory, and I did met her, to see if she was a phony. She is as real and as sincere as my mother. She told me her story of the miraculous effect of LDN in her life. She wrote a book titled, The LDN Book: How a Little-Known Generic Drug ― Low Dose Naltrexone ― Could Revolutionize Treatment for Autoimmune Diseases, Cancer, Autism, Depression, and More

                              Absolutely, not everyone has a miraculous experience using LDN, most don't! BUT SOME DO!

                              The incredible mystery to me is getting people to try LDN is like pulling teeth!

                              LDN does no harm. There is no downside to trying it. Children take LDN safely.

                              I am so happy for you, L !!!!!! If you become so inclined, check out Linda E and email her if you have the urge; she would love hearing about your experience. You can google her name, if you wish.

                              Rolly

                              Comment


                                #30
                                Thank you so much for responding, KittyCoCo!

                                It's sometimes a little risky posting experiences outside the norm so I admire and congratulate you!

                                The courageous are often rewarded and people like you who speak of personal experience often make the way easier for others to follow, if they are so inclined.

                                It is interesting that you posted about improved social benefits of taking LDN because Dr. Jaquelyn McCandless used LDN quite successfully in hundreds of autistic children who often benefitted socially. There is a wealth of info about her work which can be found by googling McCandless -LDN - autistic children.

                                Again, Kat, thank you so much for posting! Please know that you are in my thoughts and prayers and please know the love of God surrounds you like an ocean every moment of your life.

                                Comment

                                Working...
                                X