I've decided to try Low Dose Naltrexone (LDN) to see if I can get some relief from my symptoms of multiple sclerosis (MS). For anyone who hasn't heard of LDN, it was the most controversial alternative treatment in the MS world, before chronic cerebrospinal venous insufficiency (CCSVI) hit the scene. Lots of people with MS love LDN (some don't) and lots of neurologists think it's nonsense (some tolerate it). As an epidemiologist with MS, I intend to do an experiment with a sample size of one - myself. I'm going to try LDN.
Actually, I should say that I'm going to try LDN again, as I was on it for about 6 months two years ago. You can check out the blog that I wrote during that experience with LDN here: Julie's Low Dose Naltrexone Journal. In this blog, I present the facts of my case - who I am (diagnosed with MS in 2003), what I am currently doing for my MS (Copaxone), and my feelings about LDN (cautiously optimistic, but wishing there was more science). Funny, here I am, almost exactly two years later and most of those factors remain the same.
However, here is what is different about me and here is what I have learned since then (and how I am going to apply those lessons to this time around with LDN):
- I ended up quitting LDN because I wasn't getting the effects that I experienced initially. Actually I backslid after upping my dose from 3 mg to 4.5 mg. Many readers wrote into the comments sections of my blog series to tell me that this had happened to them after increasing their doses, as well. I am going to try a different approach this time - I'm going to start with 1.5 mg for a month or so and see what that does. If I experience amazing effects, I am stopping there. If not, I'll increase to 3 mg, where I originally started last time.
- Since that time, I have discovered that certain foods really make my symptoms worse. I knew this about gluten. I have recently noticed that dairy is not my friend, either. I'm going to take it all the way and follow a strict diet, eliminating all legumes and eggs, as well (in addition to the dairy and gluten). I know this is not scientific. If I was running a study, I would exclude people who were going to introduce more than one "intervention" at a time. However, I am sick of feeling like crap and I am throwing the book at this.
- I'm cutting out alcohol completely, as I found out that I don't do so great when I combine alcohol with LDN. Many people say this is not a problem for them, but it was for me. Bye-bye, chocolate martinis (which contain dairy anyway) and lovely tawny port.
I'll keep you all posted as I try this again. I'm desperate to feel better and hope that I find some answers in this new/revamped "experiment" that I can share with all of you. I'd love to hear from any of you with LDN experiences. Did anyone stop and go back again? What dosage seemed to work best? Any other tips?
Here is the full list of my original LDN journal from 2 years ago, as well as some articles to lay the foundation:
Hi Julie,
I wish you the best of luck on LDN. As I read through your list of reasons why you want to give LDN another try, I am a little startled that you didn’t mention the great success that the PSU team of researchers are having with another auto-immune disease: Chrons’ disease. Although clearly a different auto-immune than MS, it should give one reason to hope for the best. With the low level of side effects, cheap costs, and potential benefits, why even hesitate to take it? I just wish neurologists would stop being so hard-headed about LDN – what’s the harm in trying it? I hope the doctors who treat Chrons’ will be a little more open-minded.
Good luck!
I realize that every case is different, but personally I did a LOT better MS-wise when I got OFF of Copaxone, the extreme local reactions to which gave my body constant inflammation to deal with, which kept my immune system much too busy…
After abandoning Copaxone I improved dramatically and got even better after a very short time on LDN, which I’ve been taking for over 7 years now and from which I cannot imagine switching.
You were taking Copaxone the whole time you were on LDN previously weren’t you? I wondered about that at the time….I’ve never heard anyone who prescribes LDN recommending simultaneous use of Copaxone or interferon.
Sometimes you have to commit to ONE plan, like picking a lane on the freeway, rather than “trying” something alternative like LDN while also clinging to the conventional medical model.
Just my experience; sincerest good luck to you.
Hi Julie
I don’t know much about LDN, but I wanted to ask you about why you are giving up legumes? I have read another blog recently about another MSer who had done the same. I, too have been diagnosed with MS since 2003 and I follow a pescatarian diet, that is vegan plus fish, as per the George Jelinek diet. Does legumes include peas and beans (and lentils?)? Look forward to your reply. Lee-Anne
Yes, legumes are all beans and groundnuts: soy, pinto, garbanzo, lentils, kidney, green beans, snap peas, green peas, and so on as well as peanuts and cashews. All plants contain the protein lectin, but some lectins–from gluten for example–are really hard on the body. Some research (and life story evidence) indicates that the lectins in legumes, casein (the protein in dairy–all dairy but dairy cow is the worst, dry land cattle a bit better and goat the best, but it’s still in all of them), and even tomatoes contribute to leaky gut syndrome in which proteins sort of ‘escape’ the gut lining and fre-wheel it in the body. This is not great for most people, but for people with auto-immune disease like MS, these errant proteins are thought to mimic myelin proteins and thus further excite/incite errant T cells to create more damage. There is a great deal of biochemistry that I can’t explain, but Dr. Loren Cordain’s work is usually cited for this stuff. The negative effects of gluten for some people counterindicate legumes, dairy, tomatoes and for some, egg whites. (Duck eggs are supposedly different and if you haven’t tried them Julie, in my opinion they are great sunny side up but gross scrambled).
Good for you! So happy to hear this. My belief is that you will not be disappointed. I have been on LDN for almost four years now. (PPMS, diagnosed 2006) Started on 4.5 mg and have stayed on that ever since. (I do not drink alcohol, by the way.)
Results for me were immediate at first, but admittedly subtle. It appears the key benefit is that progression has been slowed dramatically, but, of course, I can’t prove that. I also believe that the real benefit from LDN comes ONLY from long-term use, such as several years.
I applaud your open-mindedness!
Ive always understood that LDN was an immune system enhancer and the crab drugs are are meant to stop the immune system..im very interested how this works for you but I think you should take the ldn without the copaxone.I also understand that some symptoms get a it worse initially then get much better on LDn..Good luck..
Julie…
I’m really glad to hear you are giving it another shot. I suffer from PRMS and since I began taking LDN 3 years ago I’ve had no progression. Whatever relapses I had were mild and caused by trauma, overexertion or severe emotional distress.
I wrote a book about my experience “Google LDN!” that’s available on Amazon and Barnes and Noble.
Most of the book as well as informational vids can be viewed for free at http://www.googleldn.com.
Crossing my fingers for you…
Joseph Wouk
I tried LDN twice, first at 3 mg and did not notice anything but did not have any relapses and was doing pretty well at that time. I took for about 8 mos. Several years later I tried it again after having a bad relapse. Started at 3mg and then went to 4.5mg It didn’t seem to do anything for me. I have had CCSVI with some success and have been on Copaxone for 12 years. I hope it helps you Julie. I’ll look forward to hearing your results.
I’ll follow your experience on LDN with much anticipation. I’ve had MS for more than 30 years and now it’s getting much worse. I’m still on Avonex that seems to be working, i.e. no new lesions. Now the questions, to all of you: Do you have to stop the interferon when you take LDN? How is the world can I get an Rx if my neuro won’t give me one? Do you think LDN will help a SPMSer who probably has many severed axons by this time?
Ann
Julie,
I will keep you in my prayers for your improved health with LDN and diet changes. The gluten eliminagtion is difficult at first, but gets easier the longer you are on it. As you probably found, the incidence of celiac is higher in folks with MS. I have been gluten free for 2 1/2 years and feel a huge improvement – primarily fatigue is 80% better, numbness and tingling is 50-75% better and my bloating is gone. Even the “MS hug” is less often and lighter. It took 2-3 months to feel a difference, but you should monitor a few symptoms and rate them every day – that helped me objectively measure the result. My family doc says it can take two years for the gut to start to heal after giving up gluten, and I agree I feel better the longer I am away from gluten. I’ve cut down on dairy, legumes and eggs, but not eliminated them completely – I am watching my symptoms as I eat. Again, as you know the book on this is called “The MS Recovery Diet” by two folks with MS – Ann D. Sawyer and Judith E. Bachrach. I highly recommend folks check it out as it is very helpful.
I am a PT and a Chinese Medicine practitioner – acupuncture and herbs…this has also been a major help.
Thanks for your great blog – keep writing – it inspires me and informs.
Julianne in Denver
Julie, what are the symptoms you’re currently experiencing that are prompting you to try LDN again?
I’ve been on LDN for a little over two years. I initially started at 3mg, and went to the maximum dose of 4.5mg about a month later. It initially gave me added energy and feeling returned in my body about six weeks after starting it. I haven’t noticed another “wow factor” in a while now. It has kept my exacerbations at bay until the last year. I have another 20 new lesions on my brain and spine and I did suffer from an exacerbation this past May. I know it has been related to stress. I’ll continue with LDN probably for life. Now I need to get my stress level under control, which I’m working on.
As far as others out there questioning about using LDN with a CRAB drug, it can be done according to this study out of UCSF: Pilot Trial of Low Dose Naltrexone and Quality of Life in MS; Annals of Neurology, August 2110. Do a Google Scholar search with the title, and the first result should be this study with a link to a PDF document. It is 18 pages, and the last two pages of the study talk about concurrent use.
Personally, I wouldn’t do any mainstream medication with LDN, but that is my opinion. I’ve had so many problems with the CRAB-T drugs that I’ll never go back on them. Each person is different, so I encourage others to make the best decision for their bodies and do some research on LDN; don’t let my opinion sway you in either direction.
I wish you the best, Julie! I look forward to hearing about your experiences.
Your newsletter offers so much hope to those of us out here with MS, so I certainly don’t want to miss a chance to respond in kind. Have an open mind and know that you can play with the dosage. 4.5 Mg. was way too much for me. Spasticity. went back to 3 mg. and settled on 3.5 a couple of years ago. When the spasticity rears its ugly head, I just stop taking it for a week or so. Always resolves quickly. I took various CRABS for fourteen years. Faithfully. I went off Betaseron to try LDN and have never looked back. I am not suggesting you go off Copaxone. Just saying there are many out here who did so and lived to tell the tale. Best of luck to you, dear Julie!
I started 3.5 mg of LDN 10/10. It started to help within 24 hours, I was able to crawl (lost this ability 2 years earlier) and take a few wobbly steps ( I use a walker.) There were no side effects as long as I took it with milk. After a couple of weeks all stiffness and discomfort in my legs was gone. The best part though was the effect it had on my brain. I had trouble concentrating. I had not been able to read a book for 4-5 years because of the concentration and my eyes seemed to jump all over the page. I was a avid knitter, knitting complicated patterns, I lost the ability to read and follow instructions, after being on LDN for several weeks I was able to read and follow instructions again without any difficulty. My neurologist does not like LDN but with my insistence she let me try it. I have tried 3.5,4,4.5 and 5 (not considered LD.) As I increased the stiffness and discomfort came back in my legs with 5 being the worst so I quickly changed to 4.5. I still experienced some discomfort with the 4.5 so I am now taking 4mg daily. My doctor suggested that I may need to play with the dosage according to the season.
I have had MS for almost 14 years. I currently have secondary progressive MS. Historically I have never responded well to medication. I took Avonex for 8 years with terrible side effects that lasted 24-48 hours after each injection but it did prevent relapses. Once my liver count elevated to dangerous levels I stopped taking it.
I may not be able to ever walk with a cane again but having my cognitive function back is the best gift LDN could ever give me, especially with no side effects!
I’m a homeopath and I’ve become interested in LDN because its action seems to be somewhat homeopathic- it works in LOW doses. Actually, its action follows Arndt-Schultz rule: For every substance, small doses stimulate, moderate doses inhibit, large doses kill. So I’m not surprised at all that a lot of people relapse when they try to increase their dose. Less is more. Also, just wanted to encourage all people who have MS symptoms to find a good classical homeopath. Some homeopathic medicines might have exactly the same (or similar) effect on the CNS as LDN but without any side effects.
For all intents and purposes…LDN is basically side effect free, especially if you enjoy amazingly vivid dreams and a sky high libido. Get your facts straight Valerie, alot of people can’t handle “might” from one homeopath.
I’m sorry that what I wanted to say wasn’t clear. When I was looking into LDN for my MS patients, I found out that it had similar effects to some homeopathic medicines that help alleviate acute exacerbations and chronic manifestations of MS. I don’t have anything against LDN and I’m not proclaiming that people shouldn’t take it- it’s a wonderful drug if it works. But if it doesn’t, there are other options out there. And not just homeopathy, e.g. one of my patients has been in remission for a long time without any drugs by just following the rest-exercise program developed by R. Russell 50 or so years ago.
Hi Valerie,
I’m from India and I have tried Homoeopathic medicines twice but every time i feel worsen just after starting these medicines.
My MS symptoms increased and I was paralyzed.
Can you please share the medicines name which you suppose to be good for MS?
Thanks in advance.
Hi Isha,
Homeopathic treatment is tailored to a person, so different people respond to different medicines depending on what’s going on. I can list dozens of medicines off the top of my head that are known to help with the MS symptoms, but that doesn’t mean they are going to help in your case. To get results, it’s very important to find a good local homeopath who has experince in treating neurological conditions. Treating someone over email or internet is usually not very successful because you need a close contact with the person to perceive all that’s going on.
Hi isha,
I have come to know of a good homeo doctor in Bangalore from whose treatement a friend of mine with MS has benefited a lot: Dr Manjunath, Mobile: 9448785855
However my homeo doc is in Kolkata. He is my brother’s family doctor.
Hope Dr Manjunath can help you better.
Hi Valerie,
As you are a homeopath I want to seek your opinion on the following that my homeopath has put me on since 5 August 2011: Causticum–2 drops once a month; Natrum mur: 2 drops once a month; Embellica Off. 10 drops twice a day post meals as I have a stomach malabsorption problem; Ginseng –10 drops aft breakfast daily; Kali phos—6 tabs before bedtime. He also says that I should eat everything that suits me, but I follow the Swank diet. I feel MS and food are perhaps related though most docs disagree. Anyways my improvement on the above homeo meds is nominal tho my doc had expected more. Do you feel after one more month I may feel better? Does homeo work slow but steadily? A doctor friend of mine insists I should go for Vit B12 injections to cure MS. Will it work with homeo meds side by side? I would greatly appreciate your expert opinion.
Thanks.
Anindita
Hi Anindita,
In my experience, it often takes time to see the results from homeopathic treatment, esp. if you’ve been sick for a long time. The biggest mistake people make is not giving homeopathy enough time to work thru. I’m always surprised when someone who’s been not well for years expects to get well within days and says that homeopathy doesn’t work when this doesn’t happen. I always tell my patients to be patient and that sometimes the first round of treatment is not going to be successful because a lot depends on my understanding of the problem and the person, and after just 1 or 2 appointments my understanding may be limited.
I’ve never seen vit B12 injections interfere with homeopathic treatment.
Speaking of the diet, they don’t say for nothing that our health begins in the gut. Very often people with autoimmune diseases have compromised gut flora. I’m not an expert on nutrition, so I don’t recommend any specific diets, but if you’re interested in what role out gut plays in our overall health, I’d recommend a very good book by N. Campbell-McBride, Gut and Psychology Syndrome.
Regarding what your homeopath prescribed for you, I cannot comment on this because I don’t know your particular situation. Whether homeopathic medicines can root out the disease completely nobody can say for sure, but I’ve seen a lot of people stay asymptomatic under homeopathic treatment.
Hi Valerie,
I seek your expert opinion on the follwoing homeo meds that I am taking since Aug 5, 2011.
Causticum and Natrum mur: 2 drops once a month.
Embellica Off.: 10 drops aft lunch and dinner.
Ginseng: 10 drops aft breakfast daily.
Kali phos: 6 tabs at bedtime
My improvement is very nominal tho my doc expected a lot more. I have RRMS from 2006. I can still walk well tho my legs are weak. Another doc friend of mine says I shouldhold take VitB12 injections to get cured of MS. Will it work side by side with homeo meds? Also can homeo meds root out the disease completely as I am really scared of allopathic meds and their side effects. I also follow the Swank Diet although my hoemo doc tells me to eat everything that agrees with me so that I don’t develop vitamin/mineral deficiencies.
Please help me with your expert opinion as a homeopath.
Thanks,
Anindita
Hi Valerie,
I seek your expert opinion on the following homeo meds that I am taking since Aug 5, 2011.
Causticum and Natrum mur: 2 drops once a month.
Embellica Off.: 10 drops aft lunch and dinner.
Ginseng: 10 drops aft breakfast daily.
Kali phos: 6 tabs at bedtime
My improvement is very nominal tho my doc expected a lot more. I have RRMS from 2006. I can still walk well tho my legs are weak. Another doc friend of mine says I should take VitB12 injections to get cured of MS. Will it work side by side with homeo meds? Also can homeo meds root out the disease completely as I am really scared of allopathic meds and their side effects. I also follow the Swank Diet although my homeo doc tells me to eat everything that agrees with me so that I don’t develop vitamin/mineral deficiencies.
Please help me with your expert opinion as a homeopath.
Thanks,
Anindita
I like your comment Valerie. I started take homeopathic 3 days ago. I was also recommended to stop eating meat, which I did at the same time. For last three weeks I am searching LDN and I think I would like to try it. You wrote that homeopathic seems to have same action as LDN . Do you think it would be ok to take homeopathic and LDN at the same time?
I appreciate your answer
Hi Gabi,
I wouldn’t do both at the same time because 1) one may antidote the other and 2) if you start feeling better, you won’t know which one is helping.
Julie, I’m pleased that you are giving LDN a second chance. I’m also on LDN for the second time and am hoping for positive results this time. When I first tried LDN I was also on Rebif. I’ve stopped Rebif and do not want to go back. I’m into my third month on 3mg daily of LDN. Good luck to you and I hope you find the help you’re looking for. Bill
Hi Julie
My story is that I tried LDN for 3 months or so in 2006. I didnt experience anything negative while taking LDN but there was no positive difference in my MS symptoms. I started taking LDN again at the end of August 2009 just after finishing a course of steroids for a relapse. At that stage I was walking with a stick. I started on 1.5mg and increased over a week or so to 4.5mg and have been taking 4.5mg since. I have not had a relapse since restarting LDN. My last relapse was in August 2009 – I was averaging 3 relapses a year prior to that, each one leaving me a little worse. I definitely feel better than I did prior to August 2009 – I don’t have the extreme fatigue I used to experience (although still experience fatigue occasionally) I no longer have the burning sensations down my arms and legs or the numbness in my arms and legs. My energy level has increased tenfold. I still use a stick 95% of the time, but do not have to use it in my house. I am by no means cured, but I feel LDN has made a significant difference to my MS. I am not taking any other MS drugs, I did take Rebif for six months in 2005, but I was still relapsing and had horrible flu like side effects so stopped taking it. I am delighted you are giving LDN a second chance and I wish you the very best of luck.
Helga
I haven’t had the time to read through the other comments, so apologies if I am repeating advice already given. I am surprised that you stopped taking LDN after a worsening in your symptoms & shocked that you only intend to take a low dose & stop at that doseage if you see a benefit… this is not the correct way to take LDN & you will not benefit from this approach, I am not sure if you have received bad advice or not properly researched LDN? Firstly you need to find your correct doseage as everybody tolerates LDN differently. In order to find your correct doseage, start at 1.5mg & increase by 0.5mg fortnightly. YOU WILL get to a stage where you feel terrible, mine is 3.5mg, so drop by 0.5mg & viola! Your doseage. If you take too much or too little, you might as well not take it at all. LDN is a wonderful drug, but like any other, it has to be taken correctly. I wish you well with your trial & for all others considering trying LDN & wishing to research it properly… please search ‘ldn birmingham conference’ on you tube & listen to the experts.
Hi Julie,
I was diagnosed with Ms in 2009. Tried Rebif but had a reaction, so I convinced my neurologist to let me try LDN. She started me on 1 mg for the first week, then went to 2 mg. the second week, and 3 mg. the 3rd week. I stayed on 3 mg until I went for my CCSVI procedure. I stopped taking LDN for the procedure but then decided not to get back on it, more so to see how I would feel after the CCSVI procedure. I had slight improvements and stayed off of LDN for about 5 months. I just started feeling crappy again and decided to restart the LDN. I went straight to the 3 mg. and started feeling great. If you had asked me before restarting the LDN, I would have said that it really was not helping me much. But the second time, I truly could see the difference. I have found much relief from many of my MS symptoms. I will be staying on LDN. Good luck to you.
Good luck, Julie. I really hope it works. Keeping my fingers crossed.
I have taken LDN for 6 months now – first taking it before i went to bed -no good – could not sleep
so now i take it after my breakfast and it seems to make my
legs feel lighter
I was dx’d in 2003 as well. Started on Copaxone and LDN right away and have stayed on the LDN. I started initially with 3mg and after three months bumped up to 4.5mg which I have stayed on. Has it helped? I’m not entirely sure, since I started Copaxone, LDN and Vit D right after I was diagnosed – however I am staying on it.
I was on LDN for about four years under Dr. Bihari’s care. Since I couldn’t initially tolerate the 4.5 mg dosage, he had me on 3 mg. Periodically, I asked if I should try the higher dose, but was always told not to bother.
In 2007 I had a severe relapse, which I felt coming on. Early on I contacted Dr. Bihari. He had retired, but I did speak to his wife. SHE told me that I should never have been on 3 mg, because in the last year or so they had discovered that it’s the equivalent of a child’s dose. I was very upset, because perhaps I would not have relapsed so severely if someone from his office had called to tell me to increase to 4.5 mg.
Taking LDN with the expectation it it going to help your MS is the wrong attitude. LDN is not a disease modifier but an autoimmune regulator. Every time you take LDN it kicks the immune system to normal for a period of two hours when your sleeping. It’s that kick start that begins to modify disease that is why everyone who takes LDN has a different reaction. There is some evidence that the optimal amount to take with MS is 3 mg not 1.5 or 4 mg. Because it is well tolerated I take it every evening at 9 PM and consider it as a supplement.
Hi Julie – I’m one of those who started on a higher dose and went down because my spasticity increased. I was happy that it decreased within just a few days of lowering the dose. I’ve been on tysabri the whole time I’ve been taking the LDN, but now I think I’m going off tysabri and will be off treatment for a while till either something goes wrong or something comes out that I feel has the right mix of effectiveness and not-as-toxic! So we’ll see if the LDN can help keep me healthy in the absence of the infusion…
Have been on Copaxone since 2000 (RRMS). 1st positive MRI = 1993. Never thought about the idea of NOT being on some form of immuno-modulation, for fear of letting “progression” get a foothold. And yet, here I read of some choosing the “opt-out” route. Is that a prudent strategy? Is it common?These posts seem awfully well informed, so am really interested in hearing what you all have to say on this: “Going bare, or NOT going bare”…what is the rationale? The very real threat of brain-atrophy alone would seem to be enough to keep one on an immuno-modulatory, or so I would have thought.
I have been on Copaxone a little more than four years, since diagnosis. I’m in my early sixties, diagnosed long after decades of odd symptoms. My annual MRIs show increasing brain atrophy, more black holes, and a thinning of the corpus colossum (another area of atrophy). So I wouldn’t bank on Copaxone stopping brain atrophy. I’m considering discontinuing the Copaxone this fall as I have no evidence of it stopping anything. I don’t know about ldn, don’t know why it is sold only by “Skip” in Florida, and will just continue with my dietary changes (no meat, little diary, no fried anything.)
I HOPE you get your supply from a trusted source who deals with LDN in volume and use the correct fillers, or like some I have read end up finding out their supplier failed them and gave them fake crap and they only found out by using a family or friends dose of LDN one day and FOUND OH MY GOSH!! MINE IS JUST FAKE CRAP how did this happen? SO SAD it happens but it does, I am putting up the link to the only place I trust to get LDN the owner himself uses LDN for 12 yrs for RA, and 80% of his clients who use LDN for MS are so happy with it.
Hi Julie
I have written many times before, hope you read them. I am an RN w/ MS for 22 yrs. Worked fine for 8+1/2 yrs after being diagnosed. But as an OR nurse, couldn’t stand the 12 hours a day it required. I was sad I had to leave my job as I loved it so much, one of those rare people who really enjoy what they do.I went on LDN quite a few yrs ago, at 3mg. I feel it is the best dosage, from researching it & my neuro doc wants me only on 3 mg. I feel it does help w/ energy levels because if I forget to take it, I feel awful. Once resumed, I begin t feel better. Not miraculously, but a definite difference. I am also back on Copaxone after a 9 yr hiatus due to my BMT/Stem Cell Replacement in 2002. That was experimental at the time, but managed to get myself into a trial in Chicago. My 10 yr anniversary is coming up next March & I have no new lesions for 9 yrs. I have gotten worse, but axonal fraying of nerve endings doesn’t show on MRI. So I continue the LDN, Ampyra & Copaxone to the fullest, so I can stay somewhat active & get thru each day. Good luck to you, I like reading your blog, keep it going & I do hope u feel better on the LDN–let us know!!
And PS–for those that think LDN is only made in Florida, they are wrong. All states carry it, u just have to find a compound pharmacist to make it. I use Walgreens & have no prob. I live in NJ & my local Walgreens doesn’t have this kind of pharmacist, but the next town over does & they just mail it to me–no problem whatsoever!!
Hi Julie,
Iīve been taking LDN now for 6 months and as I have had a progressingly bad PPMS for 18 years, I donīt expect any dramatic changes. What I can say is that my ms hasnīt got worse. I have read all there is to read about LDN and I have positive hopes. I always lived with the motto ” there is no smoke without a fire”.
Also I take vitamin D3, vitamin B12 and magnesium. Iīve read on internet that many work on your CNS. I don’t discuss this with my neurologist, I just do it and feel I do something.
Also I have a an electromagnetic mattres. That is serfeel I do something
I have been on 4.5 mg. of LDN for 5 years now. I know a lot of neuro’s don’t believe in it. My neuro is now a believer since it does work for me. I have had no enchancing lesions in all that time. I did have them while being on Copaxone. While not for everyone, it was the right choice for me.
I certainly wish you better luck this time around. I was kind of disappointed that you quit early last time.As an epidemiologist you know as well as any health care professional that dialing the dosage for a given patient can be a bit of trial and error.
Keep to the basics. Start at 1mg for a couple weeks, take note of what that does for you. Bump it up to 2 mg for a couple weeks,and take note of what that does for you. if needed,bump it up to 3 mg for a couple weeks. 3 is the dosage most folks i know are at. Being of larger stature,myself, Im at 4.5mg. Thats the dosage for me.Not only will rampping up help dial things in,but you can also avoid alot of the insomnia and bizarre dreams associated with starting LDN.
Also to keep in mind are the standard MS triggers. Overexertion with still have the same effects. If it triggered symptom inflammation it still will.I have had 3 flairs since being on the LDN the worst of which is just ending nowafter about 3 weeks.The question hanging in the air is would i have had more on another medication.Or would they have been as short? I dont want to find out
Hi Julie,
Have you tried the Swank/Jelinek diet yet? You should give it a go. There is some real science to support the low saturated fat/ fish oil/ vitamin d program. It is pretty easy to follow, even when eating out. Most things have a low fat alternative. The fish oil and vitamin d really seem to cut back on the progression as well!
im soooo happy 4 you!! hope you feel better 4ever!! and thanks for shareing this!! wish you the best!!
Julie,
Do you feel that it’s better to start LDN in low doses? I took 4.5 for 5 years or so, then stopped. I wonder if 4.5 was too much. Didn’t notice anything dramatic but thinking of resuming it again. I’ve put on a little weight so I wonder if 4.5 might be good for me now.
Julie, I, too, was diagnosed w RRMS in ‘03 and have been on Copaxone all this time. Like you, too, I am gluten, dairy and most legume- free. I had food sensitivity testing and eggs and garbanzo beans are OK, if rotated. ANYWAY, I took maybe 4.00 LDN for awhile 3 years ago, saw and felt nothing, and discontinued. About six months ago, I got another script, for 4.5 mg. All my initiation, the neurologist was passive. (Have you read the book by “The Promise of Low Dose Naltrexone”?) Please continue honing in on this important topic. Wish you the best!
Hi – great info – but my eternal question — what ARE you eating?Are you part of the raw/living food movement? My chiropractor
is into raw fruits and veggies and organic meat / chicken or
fish. What do you eat for breakfast?? I’m not doing well with beans or eggs either and always thought it was just my whacky digestion! Check out the Ejuva website for info on cleansing — has anyone done this. I just learned about it today!
Thanks for sharing – -Barbara
hi everyone i just found this site, and i like it, the responses are great and many are feeling just as i am. i have had ms now for 14 years. i am not going to get deep in my life. all of you have gone through or are going through what i do on a daily basis. however i am on tysabri, have been for 30 months. i feel lately i am progressing although, my last mri shows no activity (3 months ago) my next mri is this month. they are now going to be every 3 months due to jvc count has gone up. (now i am nervous about pml). anyway, i talked to my doc’s nurse about ldn. i am in the process of getting it. i beleive i am going to start on lowest mgs first i hope someone responds and tells me what they think.
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Started on 3ldn and recently chsngedto 4.5. This was because of continuing fatigue and low energy. Iam improving greatly. Also, find alcohol will make me feel really crappy the next day, even a beer or wine. So it is a decision of how i want to feel. Also,, major weather changes will still affect me. Iwas told recently about copaxone. Does aanyone know about the details of tthe 4 proteins and can their be a more natural way to get tthese proteins.
Hmm i hope you don’t get annoyed with this question, but how much does a site like yours earn?