Low Dose Naltrexone (LDN): The treatment you’ve never heard of…
Why haven’t you heard about this amazing new breakthrough for conditions ranging from autoimmunity to cancer? Perhaps because as of yet no company has stepped forward with the billions of dollars needed to do a large-scale study on low-dose naltrexone (LDN). Unfortunately getting FDA-approval for use is not a straightforward process. With the patent expired, no drug company has been willing to pay such a large sum when they cannot sell the drug exclusively.
However, if you check PubMed, there are currently over 90 studies published on the various uses of LDN, from pain relief, fibromyalgia, Crohn’s disease, multiple sclerosis, systemic sclerosis and even cancer. I have been using this drug in clinical practice with great results for the past several years and I want to tell you about it…
So how does LDN work?
Researchers at The Pennsylvania State University College of Medicine, Hershey, Pennsylvania have discovered the mechanism by which a low dose of the opioid antagonist naltrexone, an agent used clinically (off-label) to treat cancer and autoimmune diseases, exerts a profound inhibitory effect on cell proliferation. We believe that opioid receptor blockade by LDN provokes a compensatory elevation in endogenous opioids and opioid receptors that can function even after LDN is no longer available.
These papers revealed that a short-term opioid receptor blockade with naltrexone (LDN), a general opioid receptor antagonist devoid of intrinsic activity, results in an elevation in production of your own opioids and in response to the blockade. Interference of opioid peptide–opioid receptor interactions for a short time each day (from 4-6 hours) with LDN provided a subsequent window of time (18–20 hours) for the increased levels of endogenous opioids and opioid receptors to elicit a robust functional response: the inhibition of cell proliferation. In addition many patient report an improved sense of well-being and decrease in overall pain, as one might expect with higher levels of opioid production in the body.
Preliminary Research Abounds for cancer and autoimmune disease
Low dose of the opioid antagonist naltrexone (LDN) is being used clinically off-label to treat cancer and autoimmune diseases, by exerting a profound inhibitory effect on cell proliferation. LDN is an oral medication, generic, inexpensive, and non-toxic, and has been documented to alter the course of both neoplasias and autoimmune diseases such as Crohn’s and multiple sclerosis, making this drug especially attractive as a therapeutic agent.
According to this study in Clinical Rheumatology, Low Dose Naltrexone(LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome. They suggest that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent from naltrexone’s better-known activity on opioid receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated.
A study published online in the Cochraine Library in February 2014 discusses using low-dose naltrexone to induce remission in Crohn’s Disease. Although the authors conclude there is insufficient evidence to recommend and further research is needed, data from one small study suggests that LDN may provide a benefit in terms of clinical and endoscopic response in adult patients with active Crohn’s disease. Data from two small studies suggest that LDN does not increase the rate of specific adverse events relative to placebo.
In the Journal of Clinical Gastroenterology April 2013, Naltrexone therapy appears safe with limited toxicity when given to children with Crohn’s disease and may even reduce disease activity.
Complex Regional Pain Syndrome (CRPS) is a neuropathic pain syndrome involves glial activation and central sensitization in the central nervous system. This can be a difficult disease to treat and patients suffer greatly with severe chronic pain. An article in the Journal of Neuroimmune Pharmacology showed positive outcomes of two CRPS patients, after they were treated with low-dose naltrexone, in combination with other CRPS therapies. Perhaps this is because Low Dose Naltrexone (LDN) is known to antagonize the Toll-like Receptor 4 (TLR4) pathway and attenuate activated microglia.
Link to Fibromyalgia and Autism?
Another article posted online in Discovery Medicine came to the following conclusions:
- Patients on chronic opioids relate autistically.
- Autism is a hyperopioidergic disorder.
- Fibromylagia is a hypoopioidergic disorder.
- Low opioid tone caused by opioid maintenance or fibromyalgia can usually be reversed with low-dose naltrexone.
- The increase in the incidence of autism may have been caused by the increase in use of opioids for analgesia during childbirth.
The bottom line is that for disorders that involve low endogenous opioid production, like fibromyalgia and chronic fatigue syndrome, Low Dose Naltrexone may prove to be profoundly beneficial.
A January 2013 article written in Arthritis and Rheumatology concluded that evidence continues to show that low dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain. The medication is widely available, inexpensive, safe, and well-tolerated.
Motility Agent for Small Intestinal Bacterial Overgrowth (SIBO)
Another novel use of Low Dose Naltrexone has been for aiding motility in SIBO (small intestinal bacterial overgrowth). Ploesser et al described the use of LDN for aiding the migrating motor complex (MMC) in cleansing the small bowel. His small study use 2.5mg twice daily in patients with IBS and evidence of SIBO and 4.5mg daily in patients with inflammatory bowel disease. Approximately 68% of the study patients had improvement in symptoms taking LDN. According to other research, LDN may have effects on the gut to decrease inflammation, decrease intestinal permeability and stabilize toll like receptors, in addition to aiding motility.
Experimental and Off-label but well tolerated and promising
The use of LDN for chronic disorders is still experimental and considered off-label. This doesn’t stop progressive doctors from prescribing it due to it’s safety profile. The typical dose of LDN is a compounded immediate release tablet from 1.5 to 4.5mg taken at bedtime. The few reported side effects may be related to opioid blockade at night. Occasionally patients report anxiety, insomnia, vivid dreaming or nightmares. There are a portion of patients who already have elevated opioids that may not tolerate the drug. To avoid side effects, I generally start patients on half of intended dose and increase after 7-10 days. If they still report symptoms, we move the dosing earlier in the day and may still get a beneficial effect.
Low Dose Naltrexone is an oral medication, generic, inexpensive, and non-toxic, and has been documented to alter the course of both neoplasias and autoimmune diseases such as Crohn’s and multiple sclerosis, making it an attractive and effective therapeutic agent.
For more on LDN watch my recent interview with Dr. Alex Vasquez …
I have been on this for several years. It is not a miracle cure bUT just one of my many tools in my kit that helps with my CFS (mainly post exertional fatigue).
Hi Wendi, My main symptom is also post-exertional malaise/crashing. I’m pleased to say that I’m only on my third day of LDN (0.10mg) and it already seems to be helping. Can you please share what other tools you have in your kit for this symptom?
Why does this work for some & not others? Can we do something to increase our chances of it working please. I’m so desperate for my energy to come back
Can ldn help with myloproliferitive neoplasm?
Also inflammation of unknown origin but ESR is almost treble top of range.
WBC above range.
And hypothyroid
We don’t have any studies on these conditions…
I have an MPN too! It’s Polycythemia vera. What’s yours, if you don’t mind my asking? My ESR is high normal, and my blood counts are controlled by Pegasys interferon. I’m taking LDN for chronic fatigue and pain. It seems to be helping some, five weeks in. I don’t believe it will manage my blood counts, but wouldn’t know for sure because Pegasys keeps them in line.
I just want to say how ex static I am that I found LDN 3 years ago. I have had MS for 21 year’s and have tried all of the biomedical drugs. I also found out that because I have the JC Virus I should not be on anymore immune supressants which were the only choice of new medicines that I had not tried. Needless to say 3 years ago not being on any MS medication I had the worst exaserbation I have ever had. I feared that I was going to be in a wheelchair pretty soon. I asked the Nurse that was coming to my home to take care of me if she had any other patients with MS that might know of any new medicine that wasn’t an immune supressant and she told me I should look into Low Dose Naltrexone. I did 3 months of research on the drug and then it took another 3 to find a prescribing doctor to get it. I know the results are different for each individual but for me within 2 week’s it changed my life. First all of the muscle spasms and pain I had went away and then other things started feeling better. Little by little I was able to come off of every drug I had been on for 20 years. I was able to start working out, go Kayaking and I have even climbed 4 Mountains which I had never done even before I found out that I had MS. I have mine compounded into a cream that I take transdermal and the only side effect I had was a headache because my doctor was new to the medication and she had me start at 4.5mg. I cut back to 1.5mg and increased slowly and no more headaches. Like I said before I know the results are different for everyone. I have told my family and friends with autoimmune diseases and Cancer to just try it and see if it helps because it won’t hurt you .
Thanks for sharing your story, Deana. I have several patients with MS that are doing remarkably well with LDN.
LDN was rxed for me by my pain doc for pain associated with Ankylosing Spondylitis. I got no relief from it at all.
Hi Mary
There is no indication of using LDN for AS. If you had high opioid production to begin with it will not help. LDN is amazing for the right patient but it doesn’t mean it will work for everyone.
Best
Dr Jill
How would one know if they have an over production of opiod? I was on 3mg of LDN for 2 years and doing great. All of a sudden, I can no longer take it. When I take it around 10pm, I wake up around 3am with very vivid thoughts. My best explanation is it is like dreaming while awake. Very strange thoughts just like dreams but yet I am awake. My doctor has no clue why this is happening to me. I need the LDN but can’t take it.
Does this sound like maybe I am now producing too many opiods?
Hi Carolyn,
One of the common side effects of LDN is vivid dreams or nightmares. Lucid dreaming is another form of this phenomenon which you are describing. I suggest decreasing dose of LDN to 1.5mg or stopping if this continues and is bothersome.
warmly
Dr. Jill
Dear Jill,
Do you have an studies on treating Parkinson’s patients ? My father has suffered for about 5 years and is not getting to the stage where it is difficult to dress himself. Regards
Samantha
I have not seen any studies on Parkinson patients. In that population, I would be more concerned about treating inflammation and environmental toxicity.
Hi Jill,
Are you aware of any work on the use of LDN in Spondyloarthropathies – specifically Ankylosing Spondylitis?
Cheers!
No, I am not
Hi jill,
Would this help me with post actute withdrawl generally called PAWS for 8 years of pain management with oxycodone? I still have horrible fatigue, cant sleep, and pain from herniated disc, torn meniscous in both knees and torn acl. I also think alot of pain is from the lack of natural opioid production from the depletion from oxycodone. And how can i get it? You might just save my life because im starting to be at my wits end. Im only 31. -chris md
Hi Chris
I would discuss with your doctor. One contraindication of naltrexone is opiod use.
warmly
Dr Jill
So if I’ve been in on prescription Tylenol # 3 for fibromyalgia and am weaning off it ( due to government regulations as far as I can tell) am I never a candidate for LDN? I also have chronic migraine treated with Botox and omitted.
You may talk to your doctor about LDN. For some patients it decreases the overall pain they experience
Ankylosing Spondylitis is on the LDN Research Trust’s list of ‘Diseases treated with LDN’.
They have a fairly active facebook group for LDN users to ask questions and share information.
I have severe Lupus sle, spondi, slipped L456,s1, nerve disease, ra, endomettrosis, chrohns, and finally a cure for pgad with antidep, with a yr on ldn. I’m in pain, but no pain meds since hospital, surgury, etc..for 5 yrs an no dangerous biologicals!! Soon, will be surgery an then hospice care at 46, so il have to stop and go for relief.so
Could this possibly be helpful for a newly diagnosed Type 1 diabetic? I may be misunderstanding the uses of it, but does it have some type of reversal on the autoimmune attack? If so, can a person become your patient from another state to be prescribed LDN? I know I would never be able to ask any of my current doctors(or any doctor here in “backwoods” KY for that matter) to prescribe this.
Yes, indeed. However, in a type 1 diabetic, there is little or no insulin production and in clinical practice (no study to back this up yet) I have seen LDN lower insulin levels so not sure it would be the right choice… Would like to see more research in this area!
warmly
Dr Jill
I am considering using LDN for my Labrador dog who has cancer, is this something that could be done? If so what dosage? Thanks
Sounds helpful but I have no idea how LDN works in animals, best to check with your vet.
warmly
Dr Jill
So I can come to you in order to receive this treatment?
Hi DeeLynn,
Please contact the office if you have questions. I am accepting new patients by referral only.
warmly
Dr Jill
I’ve been using LDN for migraine, nothing else has worked and it’s reduced daily migraine to 2x per month. I also have lupus & Lichen Planus and it’s done amazing things for me!! I still have daily headaches, but I’ll take that over the daily migraine any day!
I’ve been taking 4.5 mg LDN for more than 10 years to treat RRMS. In the past 8 years, I’ve gone from occasional use of cane to walker and soon to wheelchair. I have MS for at least 34 years that I know of, having tried, unsuccessfully, several of the DMDs. I also have Hashimoto Thyroiditis and IBS. The worst of the three, for me, is the MS, because of all the symptoms and limitations. I don’t know if the LDN is helping me, in that my disease has progressed; but I wonder if I wasn’t taking it if the progression would be much greater. I realize this treatment, like most meds, works differently for everyone. Just wish I had more benefit from it.
I tried it for Lyme, it did not help
Hi Michele – there is no indication of LDN for treatment of lyme disease
Hi
Do you have any experience with LDN and people who have numerous genetic mutations?
I have double MTHFR which causes serious reactions to every non opioid medicine I have tried for pain and other issues. I also have COMT which causes pain and dopamine imbalance. Also severe
Pyroluria. All three conditions interact but I have not found a doctor who understands or who will help me. I have severe chronic pain and anxiety and my quality of life is ebbing away.
Hi Marcia, did you try the LDN? I suspect I may have some mutations as well and would like to know your experience if you did try it.
Could it help with rheumatoid arthritis, an autoimmune not mentioned in your blog or cited articles? I wonder if it couldn’t hurt. I also have psoriatic arthritis, so any low-cost, low side effects is very interesting to me. Thanks.
I would discuss use with your doctor for any condition that does not have clinical studies.
Call Skipspharmacy.com in Boca raton, Florida. they compound LDN for mail order after faxed presceriptions. They helped support my medical researchreview (Low dose Naltrexone for disease Prevention and Quality of Life, N Brown & J Panksepp, Medical Hypotheses 2009, available for free on Google). The pharmacists there have been treating dogs and cats with LDN for many years. I treated our chihuahua for arthritis (by dissolving old 50mg Naltrexone pills in 50ml of water, then squirting from eyedropper/syringe) with evidence that her pain was significantly reduced. But it couldn’t stop her cancer when she got that. They’re VERY helpful over the phone.
There will be few clinical studies for any disease that’s such a gold mine for patented drugs. My osteoarthritis has been in remission (no inflammation, no progression) for the 10+ years I’ve taken LDN. In 2002-8 I knew a woman with severe rheumatoid arthritis who was in a clinical trial for chicken collagen type 2, which she said was helping her. But when the drug company found out they couldn’t patent it they stopped the trial and announced that it didn’t work. I found a few pub med published studies from the 1990s that indicated Chicken Collagen as a promising treatment, so that’s what led to the aborted human trial. As remarked below, the first pilot study of LDN for fibromjyalgia found that fibro would be more likely to improve if it HAS an autoimmune component than if it doesn’t. So it’s reasonable to try both Chicken Collagen II and LDN for Rheumatoid Arthritis, but give each one at least 1-2 months to notice a difference so you’ll be able to evaluate them separately.
Thanks for sharing this article Dr. Carnahan. I wasn’t aware LDN was used to treat complex regional pain syndrome! I have several patients that may ultimately benefit from this therapy.
Thanks again, I reshared this on my facebook page.
I’ve been taking LDN for MS (CIS, really) since 2009 and have been in complete remission ever since. Let’s hope that it never draws the attention of someone like Martin Shkreli who would buy the patent and jack up the price by 5000%! Fingers crossed.
HI Katherine,
Thanks for sharing your success with us… I hope you continue to improve.
warmly
Dr. Jill
How long should a person be off codeine before trying LDN? I’ve been taking an over the counter analgesic with codeine for twenty years. Also, I’m sure that the high levels of acetaminophen are not good. Have fibromyalgia, benign intentional tremor and lifelong insomnia. Was hospitalized due to naltrexone once. Doctor hadn’t heard or read about my codeine use. Is codeine fat soluble?
Hi Nancy
I would have patients avoid narcotic use for at least 7-10 days prior to using LDN
Talk to your doctor for specifics.
Warmly
Dr Jill
Do you think this would help chronic pelvic pain syndrome which seems to be nerve related?
You should talk to you doctor about this. I do not know of any studies on chronic pelvic pain and LDN
I have been thinking of trying LDN for Thoracic Outlet Syndrome which is more of a physical disease-but causes chronic nerve and muscle pain. Also for Breast Cancer. What do you think about using it for both of these diseases? I just need to find a good Dr. in L.A to prescribe it
Hi Julia
For indications other than what has already been studied, best to discuss with your doctor.
Best in healing
Dr Jill
Has there been any clinical research or publications on the effectiveness of LDN with Multiple Myeloma ? Thank you.
Hi Mike, not that I know of…
Warmly
Dr Jill
Thank you. Can you offer your thoughts ( or a link if you’ve already written about it) as to the mechanism that makes LDN appealing as a potential cancer treatment option?
Immune modulation is the mechanism. You might try here for studies… http://www.ldnresearchtrust.org
How does one find a door to prescribe LDN? I’m in Massachusetts and no luck. Regular neurologist won’t consider it.
Also, if one is currently on an interferon, is there anything in the studies to suggest how long to wait in starting LDN after stopping injections? Thanks.
Hi Denise
You might try a functional medicine doctor. Search by zip code at http://www.functionalmedicine.org
I had to start by saying I wanted to quit pain meds, but then was honest, and wo insurance, its like 150 a wk, thank God I pay 3 dollars, mines called zubsolve
Thank you so much for your article about LDN, for your wisdom and your willingness to prescribe. We need more prescribing docs and information to share with folks.
I’ve gotten the most hope from hearing people’s stories…on the interviews that LDN Research Trust hosts ….and from the stories of women and men on the two main LDN facebook groups.
I’ve been researching for several months as I look for a local doc to prescribe (who takes my insurance). Two NOs and one maybe so far. Another appt this week.
Thanks for all you do!
Hi
Has there been any research with adolescence? My son has ASD, severe anxiety, and CFS.
Thanks
Hi Shaz,
I have not read any studies on adolescents. Talk to your doctor about use of LDN and if it is appropriate for your son.
warmly
Dr Jill
My daughter has nerve and muscle pain that they can’t diagnose. Not fibro, MS or any other disease that they can determine. Is on Cymbalta 60mg and Lyrica, which helps but she’s not better, still has painful days. Also has had migraines for years before the nerve issues. Is it safe for her to take LDN with those mess?
Hi Jerrie,
I would recommend you work with your doctor to determine diagnosis and underlying cause of pain before prescribing LDN
warmly
DR Jill
Correction: I meant Meds?
I would advise trying LDN as a DIAGNOSTIC experiment, since it rarely even causes discomfort, esp if taken in the morning instead of at bedtime (when it may interfere with sleep for a week or two, because it can speed up metabolism because naltrexone bonds with endorphin receptors on the midbrain dopamine neurons). The first trial of LDN for fibromyalgia was by Dr. Miller at Stanford. A valuable result (besides 8 out of 10 women reporting symptom improvement in 8 wks) was that the symptom improvement was proportional to the SED rate, that is Rheumatoid factor in their blood. Therefore, when questioning whether a disorder has an autoimmune component, administer LDN, titrating slowly (3days–to1 week- or 2-3 weeks) from 1.5 to 3.0mg (considered bottom end of therapeutic dose) to 4 or 4.5 mg (considering body weight). If you have improvement, then your problems have an autoimmune component. Also, Sacerdote’s beta-endorphin blood test research showed that chronic migraines coexisted with chronically low BE–and my daughter (whose Ehlers-danlos Symdrome Hypermobility type is NOT an autoimmune disease) took LDN for around 2 years before increased pain forced her back onto narcotics) got rid of her chronic migraines in 1 month on LDN–and they have stillo not returned now 8 years later.
How about pain from spinal stenosis? Would the LDN help?
Hi Barbara
You will need to discuss with your doctor. Unfortunately cannot comment on any use that has not been studied.
Warmly
Dr. Jill
Have you heard anything about the LDN helping with Her 2 positive breast cancer?
I take LDN for my Hashimotos. My antibodies have reduced from the mid-400’s to 150. It’s not expensive, so I’ll keep it in my arsenal to lower them.
Hi and thanks so much for posting this useful summary.
Is there any study into long term risks of LDN use, in particular do you think there is any risk of downregulation of opioid receptors in the long term? Does this happen with Naltrexone use?
I think the low-dose eliminates most of the long-term effects of naltrexone. Certainly more research is needed….
Dr. Bernard Bihari, who began experimenting with LDN around 1984, took LDN until his death around 2008. He told me in 2004 that it speeded up the healing of his smashed wrist bones at the age of 69 (beta endorphin fosters wound healing, including bones, also helping GI tract lesions to heal in recent Crohn’s Disease studies). He mentioned that it didn’t help to control mania (in Lupus), since endorphins are central in supporting happy moods I have found that it makes many endorphinergic activities & substances (like exercise, massage, love, sex, chocolate, comfort foods, singing, humor, meditation, prayer) more enjoyable as well as right-regulating the immune system. That could be part of the connection between happiness and longevity.
Thanks for your insightful comments, Dr. Brown.
…also what diet and lifestyle alternatives might you look at first to improve opioid production without using LDN?
start with exercise, love, gratitude, sleep and good clean food
Hi Dr. Jill,
I have considered this before and I am considering it even more after reading your article. Do you know anything about it being effective specifically for rheumatoid arthritis??
Thank you, Julie
Yes, this might be a good option for you, Julie… talk to your doctor 😉
Hello. I’m wondering how LDN can help me with Hashimoto, thyroid issues, inflammation, fatigue and consistent weight gain without any solutions.
Hi Maggie,
Best to discuss with your doctor if LDN is an appropriate treatment for you. Although it has been used in many autoimmune diseases, like Crohn’s and MS, I am not aware of any studies of use in Hashimoto’s thyroiditis.
Best
Dr Jill
Dr. Jill – Are you using LDN with your mold/CIRS patients?
Yes, but not to treat CIRS. Many mold/CIRS patients have unregulated TGF-beta which creates too much TH17 and autoimmunity. If they have a specific indication for LDN, like autoimmunity, then I use it for that condition.
Hi Dr. Carnahan,
I have central pain syndrome as a result of brain surgery (left temporal lobectomy for refractory epilepsy) which I had in Aug of 2007. The central pain, a horrible constant crushing sensation in my upper face, started suddenly 6 months post op, in Feb 2008, and I have been suffering ever since. It is too much to say here, but I have tried everything under the sun–medications, surgeries, ablations, and others, you name it– without success. Just getting a diagnosis took 6 years. Anyway, I started LDN about a month ago, and hope it will help with my central pain. I wouldn’t be surprised if it takes some months before I hopefully notice some improvement, since my system (I should say neuro-immune system) has been in a “hyped up” state for so long, and I have almost forgotten what it feels like to be pain free. Would you happen to have any ideas on this? I have heard it can take months before benefits are noticed.
Second, I am also trying a strong over the counter natural supplement, imported from England–not made in US–called palmitoylethanolamide, or PeaPure for short. It’s actually made in the Netherlands, and has been available in Europe for a few decades. In the last 20 years, though, numerous studies in different countries have discovered it is beneficial, given a few months time to build up, in inflammatory conditions, neuropathic/central pain/chronic pain, and so many other conditions, so I am trying that too. It also works with glial cells/mast cells and the inflammation (too complicated to explain here, I am in the learning process.). Have you heard of this supplement? Just curious–trying to dig up all the info I can, and my patience is almost completely fried up.l. Just hope I benefit, so I can get my life going (am 36.) Thanks for any feedback/advice/insight. Best wishes–
Hi Kristina,
Wow -you’ve been through a lot and I hope you find relief from the pain… The LDN could take a few weeks to kick in but I wouldn’t expect months. I have not heard of that supplement but do let me know if you find it helpful!
warmly
Dr. Jill
Are you familiar with Contrave? It’s a combo of LDN and Wellbutrin – for weight loss and over all cravings
Can you take Bromazepam while on LDN? I am considering trying this and happy to give up codeine for it but still need my bromazepam. Thanks in advance!
Hi Miss C,
Naltrexone does not effect benzodiazepines but best to check with your prescribing doctor before mixing them
warmly
DR Jill
I have been on LDN for about 2 years now for my Hashimoto’s. It brought my TPO antibodies from a high of 795 to now about 23, so I am almost in remission. I also make sure to eat no grains, gluten, soy or dairy. It has really been a life changing drug for me. Right away I noted much more energy and joint pain disappeared. I have recommended it to others and they too have had good experiences. It really is a wonderful drug. I never want to be without it. I also get mine from Skip’s Pharmacy. Their quality is very good.
Do you think LDN Could help to release pain from systemic mastocytosis?
I read an Article of Prof. Lawrence Afrin and he had good results.
What Is your experience with Mastcell Activation Diseases?
Hi Britt,
I would not use LDN for mastocytosis but recommend looking for the root cause that your mast cells have become overactive instead.
Warmly
Dr Jill
In mastocytosis your bone marrow produces too many mast cells. The main problem is not them being overactive but too many.
The best term would be MCAS (Mast Cell Activation Disorder) not mastocytosis – http://link.springer.com/article/10.1007%2Fs11882-012-0322-z
Hi Dr. Jill! How would you recommend finding the root cause of mast cell activation? I recently developed mast cell and not sure where to begin to fix the problem! All doctors just want to treat!
Hi Chelsea – testing for infections, toxins, hormones, etc can be helpful. You may want to find a functional medicine doctor to help you.
Warmly
Dr Jill
Can you give any link to that article?
Thanks
which article?
Few posts up, Britt said: I read an Article of Prof. Lawrence Afrin and he had good results
So I’m asking about that article.
Thanks
Hi Jill,
Could LDN help with MPNs Myeloproliferative neoplasms (also known as disorders) , chronic diseases affecting the levels of blood cells in the body Essential Thrombocythaemia (ET),
Mine is due to JAK2 V617F is named for a mutation at a specific location in the JAK2 gene and is the primary genetic test for JAK2 mutations that lead to MPNs. JAK2 mutations are acquired as opposed to inherited and result in the change of a single DNA nucleotide base pair, called a point mutation. This change results in a JAK2 protein that is constantly “on,” leading to uncontrolled blood cell growth., in my case high platelets. Thank you for your thoughts. Debbie
Hi Debbie,
I am not aware of any research supporting use in MPNs
warmly
Dr. Jill
Thanks for answering!
I do know the reason for the mastocytosis already: it is a polygenetic Mutation ( Staged with a bone marrow biopsy. ) But this Information is Not helpful in Doing something against the terrible pain, which occurs when the mastcells are proliferating their inflamatory substances.
Why wouldn’t you recommend LDN with mastocytosis? Any contraindication?
Thank you very much for your Time, Energy And help!
Britt writing from Germany
Do you have any information on how cancer reacts to LDN?
Please see references at end of article and links within article, Denise
can this possibly help burning mouth syndrome?
I do not think it would help burning mouth syndrome.
I am a newbie as of January 2016 in taking LDN . I have MS and also a rare Neuro-Endocrine Disease. I did a lot of research on DMD’s vs LDN and by far LDN was what I chose. In my research, Skip’s Pharmacy was rated the #1 compound pharmacy to get the LDN. I received a written prescription from my Neuro but I called Skip’s Pharmacy and thy would not fill it because I live in NC. Those of you receiving it from Skip’s do you all live in FL? I had to wind up using a local pharmacy in my town.
Hi Becky
Any knowledgable compounding pharmacy should be able to make low-dose naltrexone.
warmly
Dr Jill
Skip’s fills meds all the time out of state and mails it. However, my doctor, at COEM in Charleston, SC calls it in for me directly to Skips, so I never see a hand written prescription.
Hi, I am the mother of a 26 year old son who has had a NewDaily Persistent headache since age 18. He has tried multiple preventives, Botox, nerve blocks, physical therapy and many other things. Is low dose naltrexone used to treat this condition?
HI Caryn,
I have not seen any evidence for use of LDN for persistent daily headaches. Best to discuss with your doctor.
warmly
Dr Jill
Caryn, Search “migraine” on this page. There is a gentleman with a PhD (don’t remember his name) who spoke of successfully treating his son’s migraines using LDN. Not sure if migraines relate at all to your son’s condition, but worth looking at.
I tried it for several months as a potential treatment for preventing the return of my SIBO (small intestinal bacterial overgrowth). I was excited about the possibility that it might help with other conditions as well, but I did not notice any real changes so I discontinued it. It may help others, though.
Yes, unfortunately it’s not for everyone, Yvonne 😉
Yvonne, did your SIBO come back while on LDN?
I wonder about trigeminal neuralgia?
no evidence that I know of but you could discuss with your doctor if you’d like to try LDN…
Any info on LDN and Dermatomyositis?
none that I know of…
Yes LDN is a very effective drug for Dermatomyositis ,(up to 4.5 mg/night), and compounded with Avicel as a filler) along with Minocycline, take up to 200 mg taken every 2nd day. For both drugs you need to start on much lower doses, and work up to these maximums.
For LDN, there is an online LDN World database you can search by disease name.
For Minocycline, start reading the “ROADBACK FOUNDATION” website.
These two drugs combined, completely reversed my wife’s DM, as she was completely bedridden with no hope, but now able to walk normally after 1-2 years of these drugs. She still takes both after 8 years, as DM is still in remission.
I have EDS and chronic pain and tried LDN for three months and found that it Made my already dry eyes painfully worse. My dr said he’d never seen that response–have you heard of this side effect or any speculation on why that might happen? I wonder if misfaiagnosus or more going on w allergies.
Hi Christina,
LDN is not for everyone, nor is it a miracle cure. If one has high endorphins, LDN may make you feel worse. It works well in patients who have low endorphins.
warmly
Dr Jill
maybe a filler ingredient not med itself
I have used LDN for over 5 years now. I was diagnosed with MS. At the time I had intense nerve pain on the bottom of my feet and knees. It was difficult to climb stairs. A few years before I meant a lady who claimed her MS was in submission due to LDN and there were no side effects. I called her and she gave me the name of a Naturopath that could write a prescription. Within ten days I was back to normal and have not felt the pain I felt before. Thankfully LDN worked for me.
My sister was diagnosed with a new MS drug and she is exhausted a majority of the time and has had her feet give out. She thinks sticking with her doctor and the medicine is the right thing for her.
Hi Dr. Jill,
Is LDN useful for idiopathic peripheral neuropathy? Thank you.
Margaret
Hi Margaret
Best to discuss with your doctor… I don’t know of any studies in this condition.
warmly
Dr. Jill
Hi Dr. Jill,
Thank you for this article. I am just learning about this med. My 15yo daughter was recently diagnosed with fibromyalgia and is having a very difficult time with the pain. Her ‘normal’ life has basically come to a halt and I am unsure how to help her. Her regular doctor is not wanting to go the ‘medication route’. Would LDN be an option for a teen with fibro? We live in Littleton. I need to find a doctor who is willing to think outside the box a little.
Thank you.
Hi Wendy
It may help but best to discuss with your doctor or find a new one ? I recommend looking for functional medicine expert.
Warmly
Dr Jill
Dr. Carnahan,
I have read some info on LDN and the positive outcomes it brings for infertility and things like endometreosis and PCOS. Have you treated anyone with these conditions? I have endometreosis and am in severe pain almost all the time. Also, would you take a patient like me and try LDN for treating my endometreosis? I live in Wyoming, but would make a trip to you just so I can get some answers and some relief!
Thanks,
Kayla
Yes, many fertility specialists are using LDN…
would like to know what cirs stands for and can LDN help with mold infected sinuses ?
CIRS is Chronic Inflammatory Response Syndrome – more here http://www.survivingmold.com/docs/Berndtson_essay_2_CIRS.pdf
Has LDN been used successfully on people with multiple chemical sensitivity?
Hi David – not that I know of…
THANKS FOR THE INFORMATION ON CIRS. I WAS EXPOSED TO MOLD THAT WAS IN THE CENTRAL HEATING AND AIR DUCTS. I BEGAN TO EXPERIENCE SYMPTOMS BUT DID NOT REALIZE IT HAD TAKEN UP RESIDENCE IN MY SINUSES FOR SEVERAL MONTHS. I THOUGHT THE ODOR I WAS SMELLING WAS IN THE AIR. I HAVE BEEN USING 35% FOOD GRADE HYDROGEN PEROXIDE FOR 6 MONTHS AND A SUGAR FREE DIET AND HAVE EXPERIENCED SOME RELIEF. I WOULD APPRECIATE ANY INFO YOU MAY BE ABLE TO PROVIDE FOR ERADICATING THE SPORES.
THANK YOU,
DAVID
Do you recommend LDN for celiac disease? If so what dosage and what would is the benefit?
HI Stacey
Many patients with celiac disease have underlying SIBO and in that case LDN may be helpful. Talk to your doctor to see if it is appropriate for you.
Warmly
Dr Jill
Hello Dr.Jill
Would you happen to know of LDN’s effectiveness on Alopecia Universalis ( AU ) ? Seeing as how that is thought of as being an autoimmune disorder ( and several people have responded positively to Xeljanz – Medication usually prescribed for RA ).
While I understand that the diseases and conditions being discussed in the comments section are much more severe and debilitating, AU’s impact on a person’s mentality can be equally bad ( I can vouch for that, personally ).
Thanks a lot for this article.
Santa
Hi Santa
I have not ready any studies about use of LDN in alopecia universals.
warmly
Dr Jill
Thanks very much for replying, Jill.
🙂
Santa
Alopecia is autoimmune. I would definitely give it a try.
Hi, thanks for this article. What are the symptoms in patients who “already have elevated opioids that may not tolerate the drug?” I was prescribed this for probable progressive MS (not officially diagnosed, but all other explanations for symptoms, high IGG index, and oligoclonal bands in CSF have been ruled out). I started out on 3.5mg. After three doses, I did not get out of bed, because I was just so sleepy and I felt high. Doc dropped me to 1.5mg and after four doses I was really sleepy for four days (three days after I stopped taking it). But, I was pain free, anxiety free, and had an ideal appetite (wanted to eat regularly, but not too much).
I have Gilbert’s Syndrome, so I think I must not be metabolizing it. But, I am wondering if there are other possible explanations for the reason the LDN knocks me out so hard. My doc doesn’t know much about GS, so he hasn’t really been able to tell me if he thinks it’s part of the issue. Any ideas? I really want it to work, but I can’t be so sleepy all the time.
If you don’t feel well on LDN, I suggest you stop
Jules, I don’t know about the “feeling high” thing, but as far as feeling sleepy…from reading people’s experience in the LDN Facebook groups, it is common to feel extremely fatigued for the first week or two (or sometimes more). This was true for me as well and I started at only 0.10mg.
Hi Jill,
I am a 34yr old male, newly diagnosed with Sarcoidosis. My pulmonologist does not seem worried as he said it is stage 1 (only because I don’t have lung lesions yet), but it is ruining my life. The chest pain, throat pain, just feeling horrible all the time. I just started on 20mg of Pred 4 weeks ago and have had no benefit. Would this be worth a shot? Thanks!
Hi Ryan,
I have no experience using LDN for sarcoidosis.
warmly
Dr Jill
Hi Jill,
I am a 51 yr old female with cervical spondylosis, spinal stenosis and osteoarthritis. In addition I suffer depression (cannot take antidepressants), hypertension, and heart disease.
After trying many types of meds (some didn’t help, were too strong, or too many side effects), with the help of my pain mgt dr we finally found the right combination that worked the best. For the past aprox 6 yrs I have been taking 15 mg ER morphine 2x and 7.5 hydrocodone 4x daily. I also use a TENS unit with heat therapy. This regimen has helped my quality of life, although I don’t think any amount of meds will take away all the pain, those of us who live with it day and night are grateful for the relief we can get. Unfortunately, due to the huge increase of narcotic overdoes, TN laws are putting more pressure on my pain mgt clinic, my pain mgt dr and I discussed alternative methods of treatment should it become even more difficult to treat my pain (clinic may decide to shut it’s doors). She told me about LDN and that it “may” help my pain, but I would have to come off my opiates for 10 days. I’m not sure how I’m going to do that, being on them for so long…not to mention I would not be able to function during that time and I have custody of my 10 yr old grandson…it’s just the two of us. I’m also not finding a lot of information online on studies of LDN for my diseases, which scares me.
Are you aware of any successful studies at this time? I fear I will go through the trouble and suffering to get off the opiates, and then the LDN will not work…then what?? Also, I have heart disease and may need OHS this year. If I’m on LDN, they cannot give me pain medication in conjunction with my open heart surgery???? OUCH! Ummmm I don’t think so!
Tammy
I am not…
Does LDN help with mood disorders?
Hi Liz,
I do not think it’s been used for mood disorders specifically but often patients who take LDN feel improvement in mood
Warmly
Dr Jill
Hi,
I had an integrative Dr tell me he wouldn’t recommend LDN for ER+ Breast Cancer because it lowers
the immune system.although he says he hasn’t studied it recently and is only going by what he knows from 20 yrs ago. I started taking it for nerve pain and its supposed Anti-cancer properties but I wouldn’t want to continue taking it if it destroys my immune system and my ability to fight the Breast Cancer. Any thoughts?
Thank You,
Julia
it help LdN for hypoglycemia ?
unlikely
LDN worked excellent for balancing my neuro transmitters by ‘resetting’ my nervous system due to chronic EBV. Anxiety went away within 4 days. However, started getting gastro/gerd, histamine issues seemed to have surfaced and aggravated by LDN, looked into excipients and ascorbic acid might have been the culprit. In any event, was a lifesaver for neuro and nervous system balancing for me, sleeping better with it, but after 6 weeks stopped working on the pain, of which is a bummer..it was working so well. Maybe endorphine levels have changed, as you mentioned Jill, may not be working so well.
Dr. Jill,
Would LDN be a good idea for me? I am currently seeing an FM Gastro for my SIBO. Prior to seeing him I had already begun a SIBO protocol using herbs as he had a 3 month waiting list. Everything I did worked including the use of Atrantil. However, he advised me to continue with oil of oregano for a month in addition to probiotics a few hours after the oregano. He has advised me based upon nothing but bloodwork (no stool/digestive/breath tests)To cut to the chase, I have taken a big turn for the worse and am unable to tolerate the oregano as it upsets my stomach. The Atrantil is also beginning to upset my stomach (GERD). The herbs (berberine, garlic, undecyn) now have caused my liver to hurt and feel hard (it has been 4 months of this stuff afte rall) and I am on a no-carb, low fiber, low starch diet (as a vegetarian). In addition, I also have psoriasis/psoriatic arthritis and fibromyalgia with pain at such high levels as to completely debilitate me. One last word, I had a Ubiome test done February and it showed “0” lactobacilli and .03 bifido bacteria, and 5 x the normal amount of Prevotella (?) which is associated with psoriasis/vaginosis. BTW – I would love to come to see you and am willing to irritate/annoy my current FM gastro for a referral if there was any chance of seeing you.
Hi Jennifer,
LDN can be used to enhance motility in SIBO but I recommend discussing with your doctor before starting
warmly
Dr Jill
Su verdadero bien … Usted está justo para obtener el formulario de membresía para que pueda obtener su registro bien
Dr. Jill, is LDN recommended for GERD or gall bladder issues?
Hi Jaye
I have not used LDN for GERD or cholecystitis/cholestasis.
Warmly
Dr Jill
Have you seen any patients use this for allergies or mast cell disorders?
Hi Grace
I have used LDN in patients with allergies or excess histamine but not specifically for that purpose. It is possible that modulating endorphins could help this disease but I don’t think we know the answer for certain yet.
warmly
Dr Jill
Can LDN cause eye pain? And if so, why does it happen and is it dangerous?
It is possible, best to discuss side effect with your prescribing physician
Thank you for this post. It gave me the courage to find an open minded physician who allowed me to do the split dose you mentioned in the lecture. I have Hashimoto’s and over past 6 months since a gluten exposure had been having a very difficult time due to a flare and everything I tried never seemed to be enough, it was very frustrating. Along with that the past 3 years I have had GI issues (most likely SIBO) that I had basically learned to just “deal” with. Even thought I have had improvements since first switching over a lot of lifestyle changes since being inspired to study Functional Medicine myself, it always would come back (the GI issues). I started the LDN (2mg in AM, 2mg in PM) and have noticed a huge improvement in my energy, creativity and bowel movements as well. I know that stress is a major contributor to my underlying condition, and I will continue to work on this….but having the LDN has given me a head start and has allowed me to feel like myself again <3
Hi Dr. Jill,
Is LDN 1.5 mg ok to take if you are titrating off of Valium I take 3mg 3 times a day so far still titrating I was told that taking this for my multitude of autoimmune issues some very rare that it might also help me to get off of Valium easier. Is this true, I have not been able to find anything online regarding these two meds. Talked to doctor and pharmacist they just say no interactions found so don’t worry. Double checking is always good I hope you might shed some light:):):)
Thank you:):)
Hi Shelley,
Best to check with your doctor on this but typically LDN should be avoided with narcotics but unlikely to interact with benzodiazepines
Warmly
Dr Jill
Hi Dr Jill, I wonder if you could hypothesize if someone tried this with no particular ailment except depression, because of it’s endorphin elevating properties, that it might be a safer alternative than the unpredictable ssri’s as it seems to have no adverse side effects otherwise?
Hi Bob,
Low dose naltrexone has been shown to improve mood in some patients
warmly
Dr Jill
Dr. Jill, Have you heard of LDN for NDPH – New Daily Persistent Headache or CDH Chronic Daily Headache? Or anything else you have found helpful? Thanks
I have not …
Hi Jill,
I have a different story with this medicine. I’ve been taking LDN for about 2 weeks now. Started off at 1.5 and now I am at 4.5.I am using it for TBI (traumatic brain injury), Anxiety, Depression and Hypervigilance. I have noticed that my depression is much better and my anxiety is also a little better. I also think that the Hypervigilance is also slightly better. I had a series of medical issues since birth starting with spinal meningitis, so bad that I was given my last rights at 16mo old. Then I had a bad car accident at the age of 16 and numerous sports concussions and adult concussions. I also have bad asthma in which I am taking a corticosteroid that is suppressing my adrenal gland and my hormone levels. Then on top of that I’ve had sleep apnea for over 10 years and that has also affected my brain. My doctor wanted me to go on Lexapro, but after all of the nasty side effects, I said no. But my Naturopathic Doctor who is treating my Adrenal and my hormone issues told me that LDN might work for my TBI. So far so good. But I am hoping for more improvement because I still have significant brain fog and I am tired all the time. Even with the supplements and my CPAP machine. All of the issues has caused a huge rift in my marriage and I am now on the verge of a divorce after 30 years. So that also has me stressed out. But I am still working a 6 figure income IT job with no issues so far. So I am hoping that the LDN will help me get better so my quality of my life also gets better! I just thought I’d put in my experience with this as I am excited for a new future!
Hello, thank you for this article. My current doctor is very interested in my trying LDN for my chronic abdominal pain and SIBO issues. I am not yet ready to commit to a drug for the long term (like years), and I can’t find any information about people who took it for a set period of time. All I can find is information about people taking it indefinitely. I would been more keen to try it if I knew there were people who took it and in the process gave their body a break and a chance to heal, and then weaned off of it and were left better off than when they started. Do you have any experience with people who took it for a shorter period of time and had success?
Hi Brigitte,
I think there is short term benefit as well but we need more research to determine if this is really true.
warmly
Dr Jill
My wife was diagnosed of Parkinsons Disease at age 59. She had severe calf pain, muscle pain, tremors, slurred speech, frequent falls, loss of balance, difficulty in getting up from sitting position. She was put on Senemet for 6 months and then Siferol was introduced and replaced the Senemet. During this time span she was also diagnosed with dementia. She started having hallucinations, lost touch with reality.
This year, our family doctor started her on NewLife Clinic Parkinsons Disease Herbal mixture, 1 month into treatment she improved dramatically. At the end of the full treatment course, the disease is totally under control. No case of dementia, hallucination, weakness, muscle pain or tremors.
Visit NewLife Clinic website ww w.newlifeherbalclinic .com. She is strong again and able to go about daily activities.
David Craven
I am wondering if LDN is something that should be pulse dosed, i.e. 5 days on 2 days off, or a break taken every so many weeks? Often times this method is used when taking adaptogenic herbs, etc., and things like iodine therapy, etc.
I had heard one researcher say they recommended using LDN for short periods of time, siting that continued use would cause an increase in opiod receptors. However, I am not sure if they are accurate in their theories, since many use it daily.
I have not seen any studies, or heard anyone talk about intermitent use of LDN, maybe you could comment on that issue?
I do not know about pulse dosing
Have you heard of LDN causing a decrease in platelets?
No but anything is possible, discuss with your physician if you are noticing unusual side effects. Autoimmunity can cause thrombocytopenia
Dr. Jill,
Would LDN be beneficial for generalized myokymia? (involuntary (uncontrolled), continuous, and slow movement of muscles, sometimes described as a worm-like motion and some patients may believe that that there are living organisms within the entire body). Along with myokymia, my loved one has systemic, fiery nerve pain. The myokymia and nerve pain are 24/7 365.
Thank you.
Hi Cheryl
I don’t think we have any data but certainly worth a try.
warmly
Dr Jill
LDN can be used to treat dermatomyositis? How to get LDN ordered/prescribed?
I have not seen used for that issue but you might try. A medical doctor can prescribe for you
Jill Carnahan, MD
I saw in earlier posts you thought that LDN wouldn’t work for Mast Cell Activation Syndrome or MCAD has your opinion changed on this or not
LDN may work for some patients to downregulate the cytokine induced inflammation that can be a trigger for MCAS
Todd
I saw in earlier posts you thought that LDN wouldn’t work for Mast Cell Activation Syndrome or MCAD has your opinion changed on this or not
Hi Dr. Jill,
What dose of LDN would you recommend for CFS that started after mono? And have you seen patients in remission from CFS because of LDN?
Thanks,
Hi Dane
Best to discuss with your prescribing physician but generally does range from 1.5 to 4.5 mg daily
warmly
Dr. Jill
Hello Dr. Jill,
I’ve had chronic constipation for over two years now, tested positive for SIBO a year ago, and after continued constipation believe I’m positive again. I’m desperate for motility and am thinking of LDN as an option. In addition, though, I’ve had bad sleep for eight years now with an absence of any delta wave and the inclusion of lots of light sleep dreaming/nightmares. I wonder if I seem like a good candidate for LDN as a treatment for motility aid?
Thank you so much!!!
Hi Bob,
yes, we often use LDN in SIBO for altered gut motility issues.
warmly
Dr. Jill