Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 Warm Greetings All. I am new to the group and have been on LDN for about 10 days for: Lupus and multiple related immune system disorders. I was reading the threads pertaining to what not to take while on LDN. I am on a regimen of many vitamins and nutritional supplements for all of my conditions (amounts to around 100 pills per day). One of the supplements I am on is: Metagenics Kaprex AI (selective kinase response modulators for balanced immune function). This is an all natural supplement containing vit d, zinc, selenium and reduced iso- alpha acids. Because of the warnings not to take immunomodulators, I am wondering if this supplement would fit into that category. Might anyone out there know? Thank you much and Blessings for health and wholeness, ~ Jordyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 --- In low dose naltrexone , " cptnspeaking " if you will take DL_Phenylalanine it might raise your blood pressure and it is important for the LDN> <cptnspeaking@...> wro> Hi Jordyn, > > I just started the medication a couple days ago and also have systemic > lupus and several other autoimmune conditions. Have you noticed a > difference? After day 2 I feel almost wired at 2mg a day, but I can't > tell if that's because I've felt lousy for a couple years and just > have what resembles normal energy now. I wasn't expecting any change > so quickly, but sleep disturbances happened on the first night but I > still felt awake the next day and was even able to run errands after > work (for many months I've had to pick one thing to do after work then > just crash at home). > > I had the same question and went through all supplements. The MD/ND > didn't want me on plant sterols, astragalus or echinacea, but vitamin > D, zinc, vitamin A, etc. were fine. I'm still on UltraInflammx (by > Metagenics) and he said that was fine. I should see if it contains > iso-alpha acids. He said licorice root (I take that instead of DGL > because I have very low blood pressure) was ok as well. He's been > using this in his practice for some time. > > Cami > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 > > Warm Greetings All. > > I am new to the group and have been on LDN for about 10 days for: > Lupus and multiple related immune system disorders. > > I was reading the threads pertaining to what not to take while on LDN. > > I am on a regimen of many vitamins and nutritional supplements for all > of my conditions (amounts to around 100 pills per day). One of the > supplements I am on is: Metagenics Kaprex AI (selective kinase > response modulators for balanced immune function). This is an all > natural supplement containing vit d, zinc, selenium and reduced iso- > alpha acids. > > Because of the warnings not to take immunomodulators, I am wondering > if this supplement would fit into that category. Might anyone out > there know? > > Thank you much and Blessings for health and wholeness, > ~ Jordyn > ============== You don't want to take Immunosuppressants with LDN like interferons, chemo's, Tysabri or steroids with LDN. Over-the-counter supplements that compliment the immune system are just fine to take with LDN. So continue with what you are taking. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Thank you . Much Appreciated. ~ Jordyn [low dose naltrexone] Re: Newbie with a question >> Warm Greetings All. > > I am new to the group and have been on LDN for about 10 days for: > Lupus and multiple related immune system disorders. > > I was reading the threads pertaining to what not to take while on LDN. > > I am on a regimen of many vitamins and nutritional supplements for all > of my conditions (amounts to around 100 pills per day). One of the > supplements I am on is: Metagenics Kaprex AI (selective kinase > response modulators for balanced immune function). This is an all > natural supplement containing vit d, zinc, selenium and reduced iso-> alpha acids. > > Because of the warnings not to take immunomodulators, I am wondering > if this supplement would fit into that category. Might anyone out > there know?> > Thank you much and Blessings for health and wholeness,> ~ Jordyn>==============You don't want to take Immunosuppressants with LDN like interferons, chemo's, Tysabri or steroids with LDN. Over-the-counter supplements that compliment the immune system are just fine to take with LDN. So continue with what you are taking. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Hi Cami. I was wondering if anyone else here was taking LDN for Lupus. Thank you for responding. Just to give you a more complete idea, my conditions are: Lupus, non-functioning adrenals, alopecia areata, hypoglycemia, and waiting on confirmation of Sjögren's syndrome. Yes! I noticed that I felt really good (mentally) within the first 24 hours. Noticable difference in extreme fatigue as well. This medication has been the only thing so far (and believe me I have been through the gambit with diagnosis and treatment approaches) to give me real hope and any relief. As you say, I wasn't expecting to see any results so quickly and relief from fatigue was a godsend. No sleep disturbances for me. Started on 3 mg. But I have never slept well. In fact, I think I might be sleeping a bit better. I have also been told no echinacea. May I ask, why no plant sterols in general? Thanks for sharing your info with me. I deeply value the support this group offers. It, along with the LDN, have been two very bright spots in a long and difficult road to wellness. Blessings and Peace, ~ Jordyn [low dose naltrexone] Re: Newbie with a question Hi Jordyn,I just started the medication a couple days ago and also have systemiclupus and several other autoimmune conditions. Have you noticed adifference? After day 2 I feel almost wired at 2mg a day, but I can'ttell if that's because I've felt lousy for a couple years and justhave what resembles normal energy now. I wasn't expecting any changeso quickly, but sleep disturbances happened on the first night but Istill felt awake the next day and was even able to run errands afterwork (for many months I've had to pick one thing to do after work thenjust crash at home).I had the same question and went through all supplements. The MD/NDdidn't want me on plant sterols, astragalus or echinacea, but vitaminD, zinc, vitamin A, etc. were fine. I'm still on UltraInflammx (byMetagenics) and he said that was fine. I should see if it containsiso-alpha acids. He said licorice root (I take that instead of DGLbecause I have very low blood pressure) was ok as well. He's beenusing this in his practice for some time.Cami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Huh? I take Moducare (plant sterols), Kaprex regular and Kaprex AI. My prescribing doc knew of these and did not suggest I stop taking them. My understanding is that Moducare and its ilk will help to regulate the immune system toward normalcy, whichever way that needs to go. I do not think it’s an immuno suppressant. I would love to know if it is contraindicated. Thanks Judy Re: Newbie with a question Posted by: " The Clasons " theclasons@... psychic.waves Fri Mar 14, 2008 3:13 am (PDT) Hi Cami. I was wondering if anyone else here was taking LDN for Lupus. Thank you for responding. Just to give you a more complete idea, my conditions are: Lupus, non-functioning adrenals, alopecia areata, hypoglycemia, and waiting on confirmation of Sjögren's syndrome. Yes! I noticed that I felt really good (mentally) within the first 24 hours. Noticable difference in extreme fatigue as well. This medication has been the only thing so far (and believe me I have been through the gambit with diagnosis and treatment approaches) to give me real hope and any relief. As you say, I wasn't expecting to see any results so quickly and relief from fatigue was a godsend. No sleep disturbances for me. Started on 3 mg. But I have never slept well. In fact, I think I might be sleeping a bit better. I have also been told no echinacea. May I ask, why no plant sterols in general? Thanks for sharing your info with me. I deeply value the support this group offers. It, along with the LDN, have been two very bright spots in a long and difficult road to wellness. Blessings and Peace, ~ Jordyn [low dose naltrexone] Re: Newbie with a question Hi Jordyn, I just started the medication a couple days ago and also have systemic lupus and several other autoimmune conditions. Have you noticed a difference? After day 2 I feel almost wired at 2mg a day, but I can't tell if that's because I've felt lousy for a couple years and just have what resembles normal energy now. I wasn't expecting any change so quickly, but sleep disturbances happened on the first night but I still felt awake the next day and was even able to run errands after work (for many months I've had to pick one thing to do after work then just crash at home). I had the same question and went through all supplements. The MD/ND didn't want me on plant sterols, astragalus or echinacea, but vitamin D, zinc, vitamin A, etc. were fine. I'm still on UltraInflammx (by Metagenics) and he said that was fine. I should see if it contains iso-alpha acids. He said licorice root (I take that instead of DGL because I have very low blood pressure) was ok as well. He's been using this in his practice for some time. Cami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 I too was told by a holistic MD to not take moducare and ldn together but either or. > > Huh? I take Moducare (plant sterols), Kaprex regular and Kaprex AI. My > prescribing doc knew of these and did not suggest I stop taking them. My > understanding is that Moducare and its ilk will help to regulate the immune > system toward normalcy, whichever way that needs to go. I do not think it¹s > an immuno suppressant. I would love to know if it is contraindicated. > > Thanks > > Judy > > Re: Newbie with a question > Posted by: " The Clasons " theclasons@... psychic.waves > Fri Mar 14, 2008 3:13 am (PDT) > > Hi Cami. > > I was wondering if anyone else here was taking LDN for Lupus. Thank you for > responding. > > Just to give you a more complete idea, my conditions are: Lupus, > non-functioning adrenals, alopecia areata, hypoglycemia, and waiting on > confirmation of Sjögren's syndrome. > > Yes! I noticed that I felt really good (mentally) within the first 24 hours. > Noticable difference in extreme fatigue as well. This medication has been > the only thing so far (and believe me I have been through the gambit with > diagnosis and treatment approaches) to give me real hope and any relief. As > you say, I wasn't expecting to see any results so quickly and relief from > fatigue was a godsend. > > No sleep disturbances for me. Started on 3 mg. But I have never slept well. > In fact, I think I might be sleeping a bit better. > > I have also been told no echinacea. May I ask, why no plant sterols in > general? > > Thanks for sharing your info with me. I deeply value the support this group > offers. It, along with the LDN, have been two very bright spots in a long > and difficult road to wellness. > > Blessings and Peace, > ~ Jordyn > > [low dose naltrexone] Re: Newbie with a question > > Hi Jordyn, > > I just started the medication a couple days ago and also have systemic > lupus and several other autoimmune conditions. Have you noticed a > difference? After day 2 I feel almost wired at 2mg a day, but I can't > tell if that's because I've felt lousy for a couple years and just > have what resembles normal energy now. I wasn't expecting any change > so quickly, but sleep disturbances happened on the first night but I > still felt awake the next day and was even able to run errands after > work (for many months I've had to pick one thing to do after work then > just crash at home). > > I had the same question and went through all supplements. The MD/ND > didn't want me on plant sterols, astragalus or echinacea, but vitamin > D, zinc, vitamin A, etc. were fine. I'm still on UltraInflammx (by > Metagenics) and he said that was fine. I should see if it contains > iso-alpha acids. He said licorice root (I take that instead of DGL > because I have very low blood pressure) was ok as well. He's been > using this in his practice for some time. > > Cami > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 I too was told by a holistic MD to not take moducare and ldn together but either or. This begs the question, should I be taking Iscador with LDN, does anyone know? I have been taking Iscador since I finished chemo over a year ago Thanks Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 I was told no Moducare, astragalus, or echinacea by my MD who is also an ND. He really did not feel that stimulating the immune system in this manner would be beneficial - he felt that it would be detrimental. I don't think Moducare goes either way - I believe it's intended to stimulate. I just briefly skimmed their website though, I'm not 100% sure. With lupus, our immune systems are already hyper-reactive, but do not seem to recognize normal cells from the ones they are meant to destroy. I can see my doctor's logic. LDN does not directly stimulate the immune system. From the LDNorg website: " The apparent mechanism of action of LDN in this disease parallels that in AIDS and other immune-related diseases. A small dose of the drug taken nightly at bedtime doubles or triples the endorphin levels in the body all of the next day restoring levels to normal. Since endorphin levels are low in people with MS, immune function is poorly orchestrated with significant impairment of the normal immune supervisory function of CD4 cells. In the absence of normal orchestration of immune function, some of the immune system cells " forget " their genetically determined ability to distinguish between the body's 100,000 unique chemical structures (called " self " ) and the chemical structures of bacteria, fungi, parasites and cancer cells (called " non-self " ). With this loss of immunologic memory, some cells begin to attack some of the body's unique chemical structures. In the case of people with MS, the tissue attacked by immune cells (particularly macrophages) is primarily the myelin that insulates nerve fibers. These attacks result in scars in the brain and spinal cord called plaques. LDN in such patients works by restoring endorphin levels to normal, thereby allowing the immune system to resume its normal supervision and orchestration. " Cami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 > > I too was told by a holistic MD to not take moducare and ldn together > but either or. > > This begs the question, should I be taking Iscador with LDN, does anyone know? I have been taking Iscador since I finished chemo over a year ago > Thanks > Celia > ========== Why did the doc say not to use Moducare? it boosts the immune system and LDN boosts the immune system. What disease do you have that Moducare would be bad for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 > > I was told no Moducare, astragalus, or echinacea by my MD who is also > an ND. He really did not feel that stimulating the immune system in > this manner would be beneficial - he felt that it would be > detrimental. I don't think Moducare goes either way - I believe it's > intended to stimulate. I just briefly skimmed their website though, > I'm not 100% sure. With lupus, our immune systems are already > hyper-reactive, but do not seem to recognize normal cells from the > ones they are meant to destroy. I can see my doctor's logic. LDN > does not directly stimulate the immune system. From the LDNorg website: > > " The apparent mechanism of action of LDN in this disease parallels > that in AIDS and other immune-related diseases. A small dose of the > drug taken nightly at bedtime doubles or triples the endorphin levels > in the body all of the next day restoring levels to normal. Since > endorphin levels are low in people with MS, immune function is poorly > orchestrated with significant impairment of the normal immune > supervisory function of CD4 cells. In the absence of normal > orchestration of immune function, some of the immune system cells > " forget " their genetically determined ability to distinguish between > the body's 100,000 unique chemical structures (called " self " ) and the > chemical structures of bacteria, fungi, parasites and cancer cells > (called " non-self " ). With this loss of immunologic memory, some cells > begin to attack some of the body's unique chemical structures. In the > case of people with MS, the tissue attacked by immune cells > (particularly macrophages) is primarily the myelin that insulates > nerve fibers. These attacks result in scars in the brain and spinal > cord called plaques. LDN in such patients works by restoring endorphin > levels to normal, thereby allowing the immune system to resume its > normal supervision and orchestration. " > > Cami > ========== These doctors are going on the Theory(and that's all it is, is a theory) that autoimmune diseases like MS, Lupus, RA, etc are a result of an over-active immune system. The theory of Bihari is low endorphins, an under-active immune system(endorphins are what regulate our immune system). So we boost/stimulate/ upregulate the immune system with LDN. These supplements you mention do the same, boost/stimulate the immune system. I take them with no problem. LDN user 4 1/2 years for progressive MS with phenominal success at halting disease progression. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 , I have not seen the Dr yet as my appt is not until June( so I will ask him more at my appt) I chose this Dr as he takes ldn himself for 3 years now. I did e-mail him my list of vitamins etc I was taking for lupus/sjogrens over lap. He e-mailed me back advising that I should not be taking moducare with ldn and never really stated why. I did google it and found several warnings regarding it on Health Canada website for people who have had severe bad reactions to it depending on their health condition. I don't much mind as my friend with lupus has been taking it for 2 years and says she quit as it did nothing for her. > > > > I too was told by a holistic MD to not take moducare and ldn > together > > but either or. > > > > This begs the question, should I be taking Iscador with LDN, does > anyone know? I have been taking Iscador since I finished chemo over > a year ago > > Thanks > > Celia > > > ========== > > Why did the doc say not to use Moducare? it boosts the immune system > and LDN boosts the immune system. What disease do you have that > Moducare would be bad for? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008  I just sent you a private post. We cannot sign you out. You must do this yourself by clicking on the word "unsubscribe" a the very bottom of one of the posts. It is the only way. [low dose naltrexone] Re: Newbie with a question , I have not seen the Dr yet as my appt is not until June( so I will ask him more at my appt) I chose this Dr as he takes ldn himself for 3 years now. I did e-mail him my list of vitamins etc I was taking for lupus/sjogrens over lap. He e-mailed me back advising that I should not be taking moducare with ldn and never really stated why. I did google it and found several warnings regarding it on Health Canada website for people who have had severe bad reactions to it depending on their health condition. I don't much mind as my friend with lupus has been taking it for 2 years and says she quit as it did nothing for her. > >> > I too was told by a holistic MD to not take moducare and ldn > together > > but either or.> > > > This begs the question, should I be taking Iscador with LDN, does > anyone know? I have been taking Iscador since I finished chemo over > a year ago> > Thanks> > Celia> >> ==========> > Why did the doc say not to use Moducare? it boosts the immune system > and LDN boosts the immune system. What disease do you have that > Moducare would be bad for?> > > Supercharge your AIM. Get the AIM toolbar for your browser. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 What dosage and frequency should my physician prescribe? The usual adult dosage is 4.5mg taken once daily at night. Because of the rhythms of the body's production of master hormones, LDN is best taken between 9pm and 3am. Most patients take it at bedtime. http://www.low dose naltrexone.org/index.htm Liquid LDN (Easiest): Acquire some ml measuring equipment from the baby section of a Drug Store and a small bottle with a screw-on cap. Put 50ml of water (distilled is best) and one 50mg " ReVia " Naltrexone tablet in the small bottle and let it dissolve with a little time and shaking. Now each ml of water in that small bottle contains 1 mg of Naltrexone. At bedtime shake the bottle, take a desired dose (no more than 4.5ml), chase it down with some water and store the small bottle in the refrigerator. Some people have reported splitting the tablet in half and dissolving it in 25ml of water to assure freshness every week. http://goodshape.net/HomemadeLDN.html Art --- > > Hi All, > > I have been diagnosed with CFIDS/FM and Lyme. My neurologist says I > probably have MS but the tests aren't conclusive. So basically no one > knows why I have disabling pain, fatigue, headaches, weakness, etc. > > I am interested in trying LDN. It sounds safe enough to give it a > trial run. I have 2 questions: > > 1. Is there a detailed protocol to using LDN available somewhere on > the web? > > 2. Is there any reason not to get the 50mg tablet of Naltrexone and > grind it with a mortar and pestle, mix it with distilled water and > carefully measure out the dose? > > Thanks for your help, > > Quote Link to comment Share on other sites More sharing options...
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