Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 I saw my GI yesterday. She looked into LDN, and when she was at some big GI conference, she said she couldn't find anyone who would admit to prescribing it. She's concerned about lack of data for long term use too. So, she wouldn't prescribe it for me. Bummer! She also thinks I should go back on Humira. Double bummer! She's going to consult with some GI's at the Mayo clinic and let me know. Also found out that I had 11 cm of the terminal ileum removed, and 5 cm of the cecum. Not too bad. Holly Crohn's SCD 12/01/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 I would say fire your GI and look for another doc who is willing to work *with* you. I was stuck with 2 HMO GI’s who would only follow the HMO protocols and who insisted diet had nothing to do with CD. When I had to resign my job and hence my HMO health insurance, that freed me up to find a doc who was willing to listen to me and who was familiar with LDN. If, after talking to the Mayo clinic, your GI still refuses to prescribe LDN for you then you can email Crystal at angelindisguiseldn@... .. She keeps a list of prescribing LDN docs from all over the country. If there is no one in your city then phone consultations are available (she has that list, too). Or, you can purchase LDN in 50 mg. tablets and make your own liquid LDN. No prescription is needed for that but must be purchased from either River Pharmacy in Canada or All Day Chemist in India. Did you show your GI the Penn State Clinical trial for Crohn’s that Dr. Jaquelyn McCandless set up? That clinical trial is available at www.LowDoseNaltrexone. Sorry to be so pushy. I have felt the best ever since starting LDN and wish more docs were familiar with it. But, there’s no money to be made from LDN or the SCD, so I am not the least bit surprised by your GI’s unwillingness to prescribe it for you. Carol CD 21 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of spookyhurst I saw my GI yesterday. She looked into LDN, and when she was at some big GI conference, she said she couldn't find anyone who would admit to prescribing it. She's concerned about lack of data for long term use too. So, she wouldn't prescribe it for me. Bummer! She also thinks I should go back on Humira. Double bummer! She's going to consult with some GI's at the Mayo clinic and let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 My GI is a competent, traditional doctor. He would never look outside the box nor would he even discuss anything like diet or LDN with me. I would not even bother to bring it up with him. I chose to get mine from a practitioner who has interest in such matters. I would say many of us take our health into our own hands and draw what works for us from different sources. PJ > > I would say fire your GI and look for another doc who is willing to work > *with* you. I was stuck with 2 HMO GI's who would only follow the HMO > protocols and who insisted diet had nothing to do with CD. When I had to > resign my job and hence my HMO health insurance, that freed me up to find a > doc who was willing to listen to me and who was familiar with LDN. If, after > talking to the Mayo clinic, your GI still refuses to prescribe LDN for you > then you can email Crystal at angelindisguiseldn@... . She keeps a > list of prescribing LDN docs from all over the country. If there is no one > in your city then phone consultations are available (she has that list, > too). Or, you can purchase LDN in 50 mg. tablets and make your own liquid > LDN. No prescription is needed for that but must be purchased from either > River Pharmacy in Canada or All Day Chemist in India. > > Did you show your GI the Penn State Clinical trial for Crohn's that Dr. > Jaquelyn McCandless set up? That clinical trial is available at > www.LowDoseNaltrexone. > > Sorry to be so pushy. I have felt the best ever since starting LDN and wish > more docs were familiar with it. But, there's no money to be made from LDN > or the SCD, so I am not the least bit surprised by your GI's unwillingness > to prescribe it for you. > > Carol > > CD 21 yrs SCD 5 yrs > > > > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf > Of spookyhurst > > I saw my GI yesterday. She looked into LDN, and when she was at some big GI > conference, she said she couldn't find anyone who would admit to prescribing > it. She's concerned about lack of data for long term use too. So, she > wouldn't prescribe it for me. Bummer! She also thinks I should go back on > Humira. Double bummer! She's going to consult with some GI's at the Mayo > clinic and let me know. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 My doc had several patients request to be put on it and he worked with them. They became sicker than they'd ever been on the traditional meds. Although he was willing to prescribe it to them he said he'd really like to see more data about it because it doesn't seem to make sense in terms of the gut being affected by something that never goes near it. I've actually thought the same thing for a while and the website doesn't even come close to answering the questions I have about it. But then again, I figure if the point of it is to increase a person's endorphins then I'll just work out rather than adding yet another medication into my system. Much healthier! Stacey > > I saw my GI yesterday. She looked into LDN, and when she was at some big GI conference, she said she couldn't find anyone who would admit to prescribing it. She's concerned about lack of data for long term use too. So, she wouldn't prescribe it for me. Bummer! She also thinks I should go back on Humira. Double bummer! She's going to consult with some GI's at the Mayo clinic and let me know. > > Also found out that I had 11 cm of the terminal ileum removed, and 5 cm of the cecum. Not too bad. > > Holly > Crohn's > SCD 12/01/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 > My doc had several patients request to be put on it and he worked > with them. They became sicker than they'd ever been on the > traditional meds. You have to do it with a strict anti gluten diet like SCD or it doesn't work. Were they doing it with those kinds of diets? > Although he was willing to prescribe it to them he said he'd really > like to see more data about it because it doesn't seem to make sense > in terms of the gut being affected by something that never goes near > it. Er, what? There are tons of endorphin receptors throughout the gut that receive heightened amounts of endorphins due to LDN. Throughout the entire intestine. I'm not sure what your doctor means by something that doesn't go near the gut in that context. Also, IBD people and people with other auto-immune diseases are generally lower than they should be in endorphins/endorphin receptors. > I've actually thought the same thing for a while and the website > doesn't even come close to answering the questions I have about it. That's one reason the LDN list is helpful or being on Dr. McCandless' list. Just like this list helps people who don't know the answers to things or who have other questions. > But then again, I figure if the point of it is to increase a > person's endorphins then I'll just work out I do both. Exercise always worked for me. I always had a short-term relief of symptoms from exercise. Which is why I feel that LDN makes so much sense to me, because it utilizes a process I understand intuitively. But LDN is far more efficient. > rather than adding yet another medication into my system. Much > healthier! I don't think it is necessarily healthier. I think it is a related chemical process going on in the body, which is why I trust the process so much. Also, there is some evidence that LDN helps to increase the amount of endorphin receptors a person has - which is helpful for people with auto-immune diseases who have fewer than normative endorphins, due to fewer than normal endorphin receptors. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Stacey, Your Doc is right.....and wrong. LDN does not have a direct effect on the gut--so he's right. But, based on all the reading I have done, it is more like a homeopathic agent in that it stimulates the body to do something to heal itself--more of an indirect effect. Regardless of what he told you , I can tell you that since I have been taking LDN (almost 2 months) I have not taken any more Lialda and my stools have improved even more than before, and I was pretty good before LDN. I have gone from eating advanced foods to eating very advanced foods. It is important to continue SCD and LDN is not a miracle drug. As Dr. McCandless says, it is not meant to be a stand alone treatment. If your doc doesn't understand the mechanism of action of LDN and why it works, it's quite possible that his other patients are not being treated correctly, ie, given immuno -suppressants concomitantly, inadequate or excessive dose, etc. The website is a diamond in the rough because it's not flashy. You actually have to take the time to click on all the LDN conferences and actually hear Dr. Jill of U. PA Hershey, present her clinical trial of Crohn's and LDN and hear the Q & A after session by professionals and laypeople alike to realize what pioneering and serious work is being done. If you read the site and read all the other links, you'll see that exercise does produce endorphins but in a limited way compared to LDN. And there is nothing 'unhealthy' about LDN---at this small dose one could compare it to the one baby aspirin a day that many people take; no side effects and big benefits at this small dose. http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf This article explains the effect LDN has on the different endorphin/enkephalin receptors. Even though the focus is on cancer in this article, it does discuss other diseases and the mechanism of action is the same. This should make sense to your doc. I don't love the yahoo LDN group the way I love this group--but I lurk and skim and that's where I got the above link. Holly, my GI doc saw the study I brought in by Jill and told me he did not do any off label prescribing. He was impressed with the study and where it was performed, as well as the the fact that it was in the Journal of Gastroenterology, a very well respected medical journal. He didn't want anything to do with it at all. Crystal ( as mentioned in the last post) does have a list of docs and even those that will do phone consults for a fee and then will prescribe. Dr. Jill has also received a large grant from NIH to continue her work and you can go on the site for NIH and read more about it as well. The studies are showing that autoimmune diseases are really diseases of low endorphin production. Many people with chronic and debilitating autoimmune diseases are unable to exercise to a level where they would produce adequate endorphin levels. LDN provides that and helps to stop the progression of disease and increase quality of life. Mara has stated very eloquently in an earlier post many months ago, that it is not about being med free but about managing this chronic disease and living the best quality life. My personal opinion is that LDN can help with that. Best Regards, Terry Rumas. DMD proctosigmoiditis since July '08, SCD July '08 LDN 4.5 mg orally Tamoxifen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Carol - Are you taking the pill form of LDN? Are you at 4.5mg? How long have you been on LDN at your current dose? To: BTVC-SCD From: cpompilo@...Date: Sat, 7 Nov 2009 16:59:35 -0600Subject: RE: OT - No LDN for me I would say fire your GI and look for another doc who is willing to work *with* you. I was stuck with 2 HMO GI’s who would only follow the HMO protocols and who insisted diet had nothing to do with CD. When I had to resign my job and hence my HMO health insurance, that freed me up to find a doc who was willing to listen to me and who was familiar with LDN. If, after talking to the Mayo clinic, your GI still refuses to prescribe LDN for you then you can email Crystal at angelindisguiseldn (AT) yahoo (DOT) com . She keeps a list of prescribing LDN docs from all over the country. If there is no one in your city then phone consultations are available (she has that list, too). Or, you can purchase LDN in 50 mg. tablets and make your own liquid LDN. No prescription is needed for that but must be purchased from either River Pharmacy in Canada or All Day Chemist in India. Did you show your GI the Penn State Clinical trial for Crohn’s that Dr. Jaquelyn McCandless set up? That clinical trial is available at www.LowDoseNaltrexone. Sorry to be so pushy. I have felt the best ever since starting LDN and wish more docs were familiar with it. But, there’s no money to be made from LDN or the SCD, so I am not the least bit surprised by your GI’s unwillingness to prescribe it for you. Carol CD 21 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of spookyhurst I saw my GI yesterday. She looked into LDN, and when she was at some big GI conference, she said she couldn't find anyone who would admit to prescribing it. She's concerned about lack of data for long term use too. So, she wouldn't prescribe it for me. Bummer! She also thinks I should go back on Humira. Double bummer! She's going to consult with some GI's at the Mayo clinic and let me know. Windows 7: Unclutter your desktop. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Hi Carol, Firing her really isn't an option. There are very few GI's that take my insurance, and I've already gone through two terrible ones. It was very difficult to come up with a replacement, and it took months for me to get in to see her. She's so much better then the other two. She really does listen to me, and spends as much time talking to me as I ask (my stupid old GI barely said two words to me). She writes down everything I tell her (like info about SCD and LDN) and researches it herself. She told me she likes to learn new info. While I'd like to try LDN, it's not a deal breaker. Hopefully once the Penn state trial info gets published, it will sway her. Holly Crohn's SCD 12/01/08 > > I would say fire your GI and look for another doc who is willing to work > *with* you. I was stuck with 2 HMO GI's who would only follow the HMO > protocols and who insisted diet had nothing to do with CD. When I had to > resign my job and hence my HMO health insurance, that freed me up to find a > doc who was willing to listen to me and who was familiar with LDN. If, after > talking to the Mayo clinic, your GI still refuses to prescribe LDN for you > then you can email Crystal at angelindisguiseldn@... . She keeps a > list of prescribing LDN docs from all over the country. If there is no one > in your city then phone consultations are available (she has that list, > too). Or, you can purchase LDN in 50 mg. tablets and make your own liquid > LDN. No prescription is needed for that but must be purchased from either > River Pharmacy in Canada or All Day Chemist in India. > > Did you show your GI the Penn State Clinical trial for Crohn's that Dr. > Jaquelyn McCandless set up? That clinical trial is available at > www.LowDoseNaltrexone. > > Sorry to be so pushy. I have felt the best ever since starting LDN and wish > more docs were familiar with it. But, there's no money to be made from LDN > or the SCD, so I am not the least bit surprised by your GI's unwillingness > to prescribe it for you. > > Carol > > CD 21 yrs SCD 5 yrs > > > > From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf > Of spookyhurst > > I saw my GI yesterday. She looked into LDN, and when she was at some big GI > conference, she said she couldn't find anyone who would admit to prescribing > it. She's concerned about lack of data for long term use too. So, she > wouldn't prescribe it for me. Bummer! She also thinks I should go back on > Humira. Double bummer! She's going to consult with some GI's at the Mayo > clinic and let me know. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 At 09:13 PM 11/7/2009, you wrote: But, based on all the reading I have done, it is more like a homeopathic agent in that it stimulates the body to do something to heal itself--more of an indirect effect. Terry, Although I understand what you're saying here, I think that in describing how LDN works to traditionally trained medical types, I would avoid the use of the term " homeopathic " because they're likely to view it as a bunch of malarkey. I see this in the two vets I use. Both women are trained in standard veterinary practices. One woman uses acupuncture in her practice. One woman uses homeopathy. The homeopath is quite willing to acknowledge the good in acupuncture, but is less accepting of traditional methods even though she is trained in them. The acupuncturist relies on acupuncture, but she very carefully skirts around homeopathic treatment with something like, " Traditional treatments would be... though Dr. S. may have an alternative which you may prefer. " (Both readily refer patients back and forth -- Dr. S refers any surgical patients to Dr. B because Dr. S says she is too slow for the safety of the animal. Dr. B. readily refers people who prefer non-traditional medicine to Dr. S.) Nonetheless, it's an interesting study in people to see the views of the two vets -- and I'll lay odds that the majority of traditionally trained M.D.s probably also view homeopathy as being unscientific. Ghu knows, our M.D.s think we're nuts enough with our diet when Everyone Knows diet has nothing to do with gut health! <wry grin> — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 Holly, My apologies to you. I get too fired up sometimes. I’ll keep my opinions & judgments to myself from now on. I am glad to hear your GI is willing to listen to you. After my experience with my 2 HMO GI’s I get upset when I hear of others on this list who relate similar experiences. Again, sorry. Carol CD 21 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of spookyhurst Hi Carol, Firing her really isn't an option. There are very few GI's that take my insurance, and I've already gone through two terrible ones. It was very difficult to come up with a replacement, and it took months for me to get in to see her. She's so much better then the other two. She really does listen to me, and spends as much time talking to me as I ask (my stupid old GI barely said two words to me). She writes down everything I tell her (like info about SCD and LDN) and researches it herself. She told me she likes to learn new info. While I'd like to try LDN, it's not a deal breaker. Hopefully once the Penn state trial info gets published, it will sway her. Holly Crohn's SCD 12/01/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 I am using the cream from Coastal Compounding, 3mg. I weigh 100 lbs. so 3 mg is the max dosage for me at this time. To figure dosage: weight in lbs. x .03 = dosage. I have been using LDN for 5 months. I started at 1.5 mg for a few days, then upped the dose by .5 mg every few days til I reached 3 mg. Carol CD 21 yrs SCD 5 yrs From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Gramenz Carol - Are you taking the pill form of LDN? Are you at 4.5mg? How long have you been on LDN at your current dose? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 I think this is why some of us have traditionally trained MD's but also consult people trained in other areas as well. I paid out of pocket to see an alternative trained MD for LDN, and I still go to my traditional GI. FWIW- I do not discuss diet or LDN with him. It would be futile. Many of us have to go " outside the box " of our insurance plans or current MD's to try new things. PJ > >But, based on all the reading I have done, it is > >more like a homeopathic agent in that it > >stimulates the body to do something to heal itself--more of an indirect effect. > > Terry, > > Although I understand what you're saying here, I > think that in describing how LDN works to > traditionally trained medical types, I would > avoid the use of the term " homeopathic " because > they're likely to view it as a bunch of malarkey. > > I see this in the two vets I use. Both women are > trained in standard veterinary practices. > > One woman uses acupuncture in her practice. One woman uses homeopathy. > > The homeopath is quite willing to acknowledge the > good in acupuncture, but is less accepting of > traditional methods even though she is trained in > them. The acupuncturist relies on acupuncture, > but she very carefully skirts around homeopathic > treatment with something like, " Traditional > treatments would be... though Dr. S. may have an > alternative which you may prefer. " (Both readily > refer patients back and forth -- Dr. S refers any > surgical patients to Dr. B because Dr. S says she > is too slow for the safety of the animal. Dr. B. > readily refers people who prefer non-traditional medicine to Dr. S.) > > Nonetheless, it's an interesting study in people > to see the views of the two vets -- and I'll lay > odds that the majority of traditionally trained > M.D.s probably also view homeopathy as being unscientific. > > Ghu knows, our M.D.s think we're nuts enough with > our diet when Everyone Knows diet has nothing to do with gut health! > > > > > — Marilyn > New Orleans, Louisiana, USA > Undiagnosed IBS since 1976, SCD since 2001 > Darn Good SCD Cook > No Human Children > Shadow & Sunny Longhair Dachshund > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 Marilyn, I agree with you 100%--I would never tell an MD that LDN works like a homeopathic agent---heck, they don't even know what that means! LDN is not truly a homeopathic agent as homeopathy is defined and there is no proof that homeopathy works. I'm not sure I believe in homeopathy. I was only trying to explain it to Stacey and provided her with a nice scientific explanation in the form of the article I posted that would explain it to her MD. That article, though not in an 'accepted' journal, is a very good explanation of the mechanism of action of LDN. I have not yet read the book 'The Promise of Low Dose Naltrexone', but here are some reviews: http://www.amazon.com/Promise-Low-Dose-Naltrexone-Therapy/product-reviews/0786437154/ref=cm_cr_pr_recent?ie=UTF8 & showViewpoints=0 & sortBy=bySubmissionDateDescending It may also be of some use when speaking to an MD. We always have to be credible when speaking to our MD's, especially about SCD. It's one of the reasons why I respect it when you don't allow snake oil discussions on this forum---SCD will never be taken seriously by the medical community if we don't maintain our credibility. I thought LDN was a little out there until I started doing the research and frankly, I didn't expect to see the results I have on my own body. I'm very grateful and excited about 'the promise of LDN' for everyone. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 No problem Carol :-). I'll certainly be watching out for the results of the Penn State trials! Holly Crohn's SCD 12/01/08 > > Holly, > > My apologies to you. I get too fired up sometimes. I'll keep my opinions & > judgments to myself from now on. > > I am glad to hear your GI is willing to listen to you. After my experience > with my 2 HMO GI's I get upset when I hear of others on this list who relate > similar experiences. > > Again, sorry. > > Carol > > CD 21 yrs SCD 5 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 Though as PJ suggested, you might be able to find a doctor in your area who takes your insurance with the help of the people on the LDN group list who give their doctor's list out to everyone who joins. I was lucky, because my regular gastro gave me the prescription - he'd given it before but it hadn't worked for the others (I imagine they did not know about the diet aspect, but am not sure) but I also found another doctor on that list where I could just pay my copay - if the situation with my long term MD had not worked out. So, it might be something to consider. Mara > > No problem Carol :-). I'll certainly be watching out for the results > of the Penn State trials! > > Holly > Crohn's > SCD 12/01/08 > > >> >> Holly, >> >> My apologies to you. I get too fired up sometimes. I'll keep my >> opinions & >> judgments to myself from now on. >> >> I am glad to hear your GI is willing to listen to you. After my >> experience >> with my 2 HMO GI's I get upset when I hear of others on this list >> who relate >> similar experiences. >> >> Again, sorry. >> >> Carol >> >> CD 21 yrs SCD 5 yrs > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 Hi There, I’ve been on LDN for over a month. I do have celiac and have been doing SCD sometimes not 100% because of the frequent traveling we are doing right now. I have had chronic fatigue for most of my life ever since getting mono when I was 5 yrs old from a water fountain. Sometimes the fatigue is very debilitating. So, my doctor started me off with 10 days of 1.5 mg of LDN, then 10 days of 3.0mg of LDN, and then 60days of 4.5mg. I’ve over halfway through my 4.5mg bottle. I don’t feel any difference. My sleep isn’t better. I wake up so groggy still. I don’t know what to think. I don’t want to stop LDN hoping that there’s still some positive effects coming. I don’t know if I’m doing something wrong for it not to be working on me. I’m still reacting to foods, though last week when I got glutened by cross contamination I didn’t puke but felt like if for many hours. I haven’t lost complete hope on LDN because it makes sense to me why it works. It is an opiod blocker and when our bodies cannot handle gluten or casein it changes it to an opiod like substance (according to the Gut And Psychology book). But I’m a bit discouraged that I’ve had no results. Has anybody else experienced this? Many Thanks, Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 Hi There,I’ve been on LDN for over a month. I do have celiac and have been doing SCD sometimes not 100% because of the frequent traveling we are doing right now. I have had chronic fatigue for most of my life ever since getting mono when I was 5 yrs old from a water fountain. Sometimes the fatigue is very debilitating.So, my doctor started me off with 10 days of 1.5 mg of LDN, then 10 days of 3.0mg of LDN, and then 60days of 4.5mg. I’ve over halfway through my 4.5mg bottle. I don’t feel any difference. My sleep isn’t better. I wake up so groggy still. I don’t know what to think. I don’t want to stop LDN hoping that there’s still some positive effects coming.Have you had your yeast levels checked? Yeast interferes with LDN and makes itnon effective. Also, I'm not sure whether LDN helps with CFS - I'm not certain, but Ibelieve I have read something to the contrary. I don’t know if I’m doing something wrong for it not to be working on me. I’m still reacting to foods, though last week when I got glutened by cross contamination I didn’t puke but felt like if for many hours.I haven’t lost complete hope on LDN because it makes sense to me why it works. It is an opiod blocker and when our bodies cannot handle gluten or casein it changes it to an opiod like substance (according to the Gut And Psychology book). But I’m a bit discouraged that I’ve had no results. Has anybody else experienced this?You should go on the LDN list and ask. They'll mention yeast but theremay be people there with more specific info that will help you as well.Sorry I can't be more helpful,Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2009 Report Share Posted November 9, 2009 >> >>>>>>> Hi There,>>>> I’ve been on LDN for over a month. I do have celiac and have been>> doing SCD sometimes not 100% because of the frequent traveling we>> are doing right now. I have had chronic fatigue for most of my life>> ever since getting mono when I was 5 yrs old from a water fountain.>> Sometimes the fatigue is very debilitating.>>>> So, my doctor started me off with 10 days of 1.5 mg of LDN, then 10>> days of 3.0mg of LDN, and then 60days of 4.5mg. I’ve over halfway>> through my 4.5mg bottle.>>>> I don’t feel any difference. My sleep isn’t better. I wake up so>> groggy still. I don’t know what to think. I don’t want to stop LDN>> hoping that there’s still some positive effects coming.Mara answered: >> Have you had your yeast levels checked? Yeast interferes with LDN and> makes it> non effective. Also, I'm not sure whether LDN helps with CFS - I'm> not certain, but I> believe I have read something to the contrary.Yes, LDN works for Chronic Fatigue; very well, for most poeple. I think the yeast issue is the first factor needing to be addressed, as Mara said. (Try oil of oregano for yeast; there are other options that work also; and do commit to the SCD entirely. Then see what happens with LDN.)n__________ Now available. A fine Christmas gift Signed copies, free gift wrapping:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; free shipping in U.S.; reduced shipping elsewhere Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2009 Report Share Posted November 9, 2009 Hi Betty, Sometimes it takes 3 months for LDN to kick in for people to feel it according to my doc. Also, are you on any types of medications? Or have had a history of lyme disease at all? Jodi Quote Link to comment Share on other sites More sharing options...
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