Overall, I have to say, I am really, really pleased. No, more than that – I am thrilled. Yes, I am still a person with MS and still feel like one most of the time. However, I continue to have moments where I feel like I don’t have MS at all – it is an amazing feeling of clarity and lightness, without the fatigue and the fuzz and the buzz and the half-second delay before something registers with my brain. I would say that these moments come about every third day for 2 to 5 hours each time. I had forgotten what it was like to feel, well, fine.
Backing up a little, however, my second week of LDN did not go so well, and I was dreading having to report how very crappy I felt. I felt worse during those couple of days than before I started (when I was desperate to try anything), honestly. I was very sad to think that the LDN might be causing this constant headache and accompanying nausea. Thinking about it scientifically, I realized that I had added a small (2 mg) amount of Ambien to my regimen when I started taking the LDN to counter the insomnia that I was assured would happen the first week or so. A quick search on the Internet revealed that headaches can be a very real (albeit rare) side effect of Ambien. I stopped taking the Ambien, and the headaches started fading, eventually disappearing about 3 days later. Just like that. I also may have been stressing my liver out a teensy bit by popping Tylenol to counter the headache, in retrospect.
Here are some other details:
- Less Trouble Sleeping: It is true. After I stopped the Ambien, I was truly afraid that I would become nocturnal on the LDN. However, much to my surprise, I found that I am sleeping better on the LDN than I was before starting it. I fall asleep quickly (actually, I crash pretty hard around 10:00 pm) and don’t even wake up during the night – or, if I do, it is brief and pleasant until I drift back to sleep.
- Fewer Lucid Dreams: These went away, for the most part. I still have snippets of weirdness, but nothing like the Dali-inspired epics that I had been experiencing.
- Paroxysmal Symptoms: I do not know if this has anything to do with the LDN or not, but I have heard that the first couple of months may bring increased symptoms in some people. For the past week, every other day I lose quite a bit of feeling in my right leg (to the point where I am limping or dragging it along) all the way up into my pelvis. Then it goes away. I remind myself that this kind of symptom does NOT usually signal a relapse, but is just the nerves going a little “haywire.” For clarification of these types of symptoms, read my full article: Paroxysmal Symptoms of Multiple Sclerosis.
- Less Fatigue and Cognitive Difficulties: Okay, this one is really amazing in terms of improvement in quality of life. Again, I will tell you the truth – most of the time, by objective “normal people” measures, I do not feel great – however, I feel AWESOME for me. I only have brief snatches of that crushing terribleness of MS fatigue where I need to put my head down, whereas before it dominated most of my mornings. I even have whole days where I don’t need to lie down at all. I have also been able to sit in one place and write for 6-hour stretches and make coherent sentences up to the bitter end, which is also new.
- Able to Tolerate Heat Better: This is what is blowing my husband away – see, I am typically extremely heat-intolerant. Where I live, we have already seen 90 degree (F) weather and high humidity this year. And I was actually outside. And I actually functioned (without weeping). In fact, while I clearly realized it was hot, I was not in a panic about it. My husband keeps reminding me that in cooler weather last year I often had trouble getting to the car when I had to walk the 25 feet to our garage.
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It’s been proposed that naltrexone acts by reducing the production of inducible nitric oxide synthase. This decreases the formation of peryoxynitrite molecules, which, in turn, prevents the inhibition of the glutamate transporters. No longer inhibited, the transporters move glutamate from the circulation preventing excess glutamate from accumulating. This prevents the excitatory neurotoxicity on neuronal cells and oligodendrocytes caused by excess glutamate. Reducing exitotoxicity reduces migroclial activation and it reduces apoptosis (programmed cell death) of the myelin-producing oligodendrocytes. This in turn, prevents destruction of the myelin sheath covering nerve fibers. Destruction of the myelin sheath is the underlying pathology in MS.
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Hey Julie I think you should add this to your blog: http://www.prweb.com/releases/UCSF_Glutamate/Multiple_Sclerosis/prweb2367794.htm
I am reading your blog on this intently. If this works out good for you I am going to speak to my doctor about trying it. I live a 2 hour drive from my job and I drive it everyday. Most days I am ready to lay down and go to sleep when I get home. I am always looking for something that makes me feel “quasi-normal”. Keep writing.
I’m personally very excited for you (that you are pleased with your experience!) – and for ME – because you’re report has inspired me to get back on it.
I’m the person who commented about having experienced that “switch” feeling of not having MS (just awareness of the risidual damage), but hadn’t associated it with the LDN until you mentioned it.
I have an appointment to see my Neuro on the 25th to discuss. I will have to stop Tysabri, but consider that no loss (and possibly a life saver). My neuro’s nurse told me last week that he had recently written a prescription for LDN for another patient who “demanded” to try it, so I’m optimistic I’ll have no problem.
I experienced those “periods” of no-MS exactly as you’ve described them – sudden onset – lasting only a few hours. But what a wonderful, refreshing few hours!
I’d like to hear from someone taking it in the cream form. I understand one source available to me will compound it as a cream, and I’m wondering about the choice of pill vs. cream – is one better than the other? What are the considerations? (When I took it before it was a concentrate that I diluted in water.) I’m reading Yahoo’s LDN group’s discussions (but the volume is daunting!).
I’m going to be looking into adding Copaxone (if I think I need something else); it’s one I have heard good things about, but have never tried.
Good luck to us all!
BTW
“For people with multiple sclerosis, the dosage of LDN ranges from 1.5 to 4.5 ml per day. It is recommended that people with any form of spasticity take no more than 3 mg per day…”
Julie,
That’s an excerpt from an earlier blog entry. I tried converting “ml” to “mg” and it’s all Greek to me.
Did you mean “3 mg” or “3 ml”? I’m confused (so what else is new?….lol)
I am a 62 year old man with Primary Progressive MS (PPMS). I showed symptoms 7 years ago and was diagnosed 6 years ago. I have been taking LDN for 5 yeras and credit it with keeping me off a zimmer frame and out of a wheel chair. I carry a cane when I go out of the house. Keep on truckin’, Julie!
It is due to your blog that I have been following that I am starting my 1st dose of LDN tonight and am SO excited.
This is really the 1st thing in 15 years of having MS that has given me real hope.
Thank you Julie for the blog and keep us posted!
Thank you, Julie. I always look forward to your journal on LDN. You are an inspiration! I am considering coming off my current therapy. These pieces of data are helpful to me as I make my decision.
Good luck with the LDN. I’ve been using it along with copaxone for the last couple months and still can’t believe the improvement. Once I got past the first week things just started getting easier again. I hope you keep up with the blog as people need to know the LDN does help people with MS.
I have tried LDN and found it did nothing for me. Zilch. Zero. Nothing.
I think if people are interested, it’s worth a try because it’s inexpensive but don’t get your hopes up either. I experienced no improvement with my MS symptoms and found it to be a waste of time and money.
I am so very glad you are getting some relief from LDN. I wish you much more relief to come. I have lost my funding for my Copaxone so am now on nothing. I cry to think I will be back where i was before the Copaxone.
Julie, your experience is very encouraging. Even a couple hours a day of relief from fatique would be so wonderful. I am on Tysabri now. Do you know if I would have to quit taking that? I was on Copaxone for 3 years but devoloped an allergy to it.
I posted two questions about LDN’s mechanism at
http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-ms&tid=408
If anybody here feels knowledgeable enough to throw in their 2 cents, that would be great.
Glutamate excess and its reduction by low dose naltrexone (LDN) are the main facets of the hypothesis proposed by the Cornell pathologist Yash Agrawal in explaining the benefits of LDN described in MS (anecdotally and in clinical trials). In his research, Dr. John Hong a senior scientists at the National Institutes of Health, has shown how glutamate contributes to the disease process in Parkinson’s Disease. In his preliminary studies of low dose opiate antagonists such as naltrexone, Dr. Hong has also shown how these compounds reduce glutamate accumulations and stop disease progression in neurological disorders.
Read more: “Glutamate Excess in Multiple Sclerosis Variants: Why Low Dose Naltrexone Offers Benefits | Suite101.com” – http://autoimmunedisease.suite101.com/article.cfm/glutamate_excess_in_multiple_sclerosis_variants#ixzz0G66boIRt&A
Thanks a lot THC4MS. That answers the second question to some extent. Now I still wonder: *how* does an opiate antagonist reduce glutamate accumulation? Is it through raising endorphin levels?
Now the first question I had was this: LDN blocks opioid receptors at night, which leads to more endorphins being produced. But as far as I understand, what matters is not the amount of endorphins produced, but the number of endorphin *receipts*. Now if the body only raises the amount of endorphins by the amount the receipts are blocked, I would expect that the total number of receipts stays the same. Does my question make sense?
Julie, thanks for your realistic reports.
Jenny, we might be in a similar situation. My neuro insists that I continue with Tysabri because it has stopped the lesion activity in my brain. Not seeing any improvement in the quality of my life, an to the contary unprecented levels of fatigue and decline in QOL I am very tempted to opt out of Tysabri and move to LDN. I would love to hear about your experience of how it goes with your neuro.
Hey Richard, You should take a look at this http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf
Richard, thanks a lot. This is definitely a worthwhile read. While I really have a lot of confidence in LDN, since it works in so many people, I just am trying to find as much scientific backing as I can. Unfortunately, this article doesn’t provide evidence for LDN creating an increase of endorphin receipts. It states that endorphin levels are increased, but what matters are the endorphin receipts by CD4 cells. As I understand it LDN blocks the receptors, which leads to more production of endorphins by the body so that the number of receipts stays the same. But if that’s the case, why does the functioning of CD4 cells change?
.
CD4 lymphocytes are known as helper inducer cells because of their ability to activate natural killer cells, macrophages, B-lymphocytes and other T-lymphocytes. CD4 T cells contain two susbsets based on the type of cytokines they release: Th1 and Th2. Th1 lymphocytes are involved in cell-mediated immunity, for instance the destruction of infected cells by cytotoxic lymphocytes. Th2 lymphocytes are involved in antibody-related immunity, for instance the production of antibodies and autoantibodies.
LDN causes an increase in metenkephalin, which increases levels of Th1 cells and reduces levels of Th2 cells.
I just started LDN Saturday night and have done it 3 nights – I’m feeling pretty miserable and crappy and figured I had two weeks of this? if I read Julia’s blog right…I’m PRMS and every disease-modifying drug (didn’t try novotrane and don’t plan to given my non-luck with the other 5) failed and some pretty badly with permanent damage, so just wondering how long to expect reactions – I didn’t have the crazy dreams because I have a wildly active imagination so didn’t notice anything out of the ordinary but experienced most of what Julia described and the headaches/nausea … I’m on the 4.5 mg, not 3.0 – any advice? I so want to stick this out given all I went through to get it!
Hello Julie,
I just read with great interest your experience with LDN. I have also been on LDN for 2 1/2 years when told my cancer was terminal and get my affairs in order.
Of course, not knowing LDN would work or not I didn’t have many choices at that time.
I didn’t have the vivid dreams but a bit of restlessness in the first few weeks which went away. My husband also takes LDN as a preventative and he has no side effects also.
LDN has slowed my cancer to give me a chance to add other alternative treatments giving all this precious time. I never dreamed I would still be well at this point in time.
My mother also takes LDN for her Rheumatoid arthritis which she had for 12 years prior. Her pain stopped within two days of taking LDN and has been on it since April 2007. Also she didn’t have vivid dreams or any side effects with LDN.
LDN is a drug that needs to be in the forefront in the medical community. Sadly many doctors dismiss it in place of more expensive therapies which have devasting side effects.
Dee
Hi Julie, did you happen to read the article on yesterday’s Mercola newsletter about LDN. It seemed to have positive feedback from Dr. Mercola, which is a surprise to me. I hope you are still doing well! Pam
To Richard: LDN is processed in the body very quickly, like 4-6 hours, that is why taking it at night is so important. It only blocks the receptors long enough to convince your body to make more endorphins, then it is gone, so that is how it increases the receipts. I read somewhere that people with MS have documented chronically low levels of endorphins.
I’ve been on LDN for just about three months. I have not tried the cream but the pills are a great improvement over the icky liquid, in taste and I also think somewhat in feeling.
The biggest improvements I see are fatigue and heat sensitivity, although as it is getting hotter here, I’m finding that I do occassionally need my fatigue meds. I’d stopped them altogether for the past couple of months. I also notice great improvement in my sleep. I get really sleepy at appropriate times and go to bed and fall asleep. I’m not sure that has ever happened to me before…its very cool.
By way of introduction, my name is Joseph Wouk. I’m the son of the novelist Herman Wouk whose works you might be familiar with. I’m a graduate of Columbia College and Columbia Law school in NYC.
I have recently completed a book entitled Google LDN! available on Amazon and B&N. It can be read in it’s entirety for free at googleldn dot com. In addition, the site has lots of information on LDN as well as three videos explaining about it ranging from seven minutes to an hour.
Julie, I wanted you to know about a drug that helped me manage the cognitive problems caused by the sub cortical dementia which resulted from my PRMS.
It’s called “Desoxyn” and there’s good coverage about it on Wikipedia.
If you are interested in my experience, if you go to googleldn.com I talk about it in chapter 23 which can be read on the site.
I’m super glad, but not surprised that LDN is helping you. I didn’t do my research, expected nothing, and 3 months after I started taking it with no other drug, all my symptoms disappeared. That was about a year ago and I remain symptom and relapse free since.
Warmest,
Joe
I was diagnosed 2 1/2 years ago and am looking forward to LDN. Why don’t you present your findings and experiences to Congress. You have the credentials.
I don’t know how this would play with all the healthcare crap, but I know it is not right for big drug companies to tamp down a good drug for the sake of future profits. It only hurts thier cause of future medicines. It’s not the insurance companies that contributes to the high cost of medicine. This is s prime example.
Allow people to maker up thier on minds, and not limit them to specific choices because of profits and patents. Or change the laws…
Julie, I’ve read your blog and readers’ comments on LDN with great interest, having researched it for months prior. My daughter has been diagnosed with Lyme, and many of her symptoms mimic MS. Have you or your audience any knowledge of whether LDN can provide similiar relief for Lyme sufferers? I’m not finding much info on that topic.