Low Dose Naltrexone For Chronic Fatigue Syndrome & Lyme Disease

This post aims to give you a little bit of background on Low Dose Naltrexone (LDN) along with some examples of research on the drug. It also gives details on my personal experience of taking it (which I have been on since 2015), to help with my Chronic Fatigue Syndrome (CFS) as well as chronic Lyme disease.

What is Low Dose Naltrexone?

Low Dose Naltrexone (LDN) is the name used for the drug Naltrexone, which was originally approved for use by the Federal Drug Agency (FDA) in 1984. The original dose of 50mg was used with the purpose of helping addicts of heroin and other opiate drugs.

Naltrexone blocks opioid receptors and blocks the reception of the opioid hormones that our brain and adrenal glands produce, called Beta-endorphin and metenkephalin. In layman’s terms what this means is that endorphin receptors are blocked, tricking the brain into producing more endorphins, which are the body’s natural form of pain killer; this in term stimulates the immune system. Many of the body’s tissues have receptors for these endorphins and enkephalis – virtually every cell of the body’s immune system!

In 1985 a physician called Bernard Bihari (MD) discovered that Naltrexone when used in much smaller doses (approx. 3mg* once a day) could have a positive effect on the body’s immune system, hence the name ‘low dose’ Naltrexone. He found that the medication worked best when taken at bedtime, noting that it was able to enhance a patient’s response to infection by HIV, the virus that causes AIDS.

Later in 1990 Dr Bihari found that other patients in his practice also benefited from using a low dose of naltrexone. Patients with cancers such as lymphoma or pancreatic cancer benefited from the drug – in some cases the results were (positively) dramatic. He also found that some people with Auto-immune diseases (such as Lupus) often showed prompt control of disease activity while taking LDN. *The optimal adult dosage for LDN has been found to be 4.5mg

What health issues can be helped by LDN?

Since these discoveries were made, there have been many research studies carried on the use of LDN, and alongside Dr Bernard Bihari (MD), there are many other physicians and researchers who have noted beneficial effects of LDN on issues such as ;-

  • Cancers such as bladder, breast, carcinoid, colon and rectal, liver, glioblastoma, lung, lymphocytic leukaemia (chronic), Lymphoma (Hodgkin’s and non-Hodgkin’s) and malignant melanoma, Multiple myeloma, neuroblastoma, ovarian, pancreatic, prostrate (untreated), renal cell carcinoma, throat and uterine cancer.
  • Auto-immune disorders such as ALS (Lou Gehrig’s disease), Alzheimer’s, autism spectrum disorders, hereditary spastic paraparesis, Multiple Sclerosis (MS), Parkinson’s disease, post – polio syndrome, Post Traumatic Stress Disorder (PTSD), Primal Lateral Sclerosis (PLS), Progressive Supranuclear Palsy, transverse Myelitis
  • Other Auto-immune issues such as Ankylosing Spondylitis, Bechet’s Disease, Celiac Disease, Chronic Fatigue Syndrome, CREST syndrome, Crohn’s Disease, Dermatomyositis, Dystonia, Endometriosis, Fibromyalgia, Hashimoto’s Thyroiditis, Irritable Bowel Syndrome (IBS), Myasthenia Gravis (MG), Nephrotic Syndrome, Pemphigoid, Primary Biliary Cirrhosis, Psoriasis, Rheumatoid Arthritis, Sarcoidosis, Scleroderma, Sjogren’s Syndrome, Stiff Person Syndrome, Systemic Lupus (SLE), Ulcerative Colitis and Wegener’s Granulomatosis.

When people read this extensive list of disorders that LDN can help, they may at first think that
LDN is some form of miracle drug! However there is simple explanation and it’s because all of these disorders all share one main thing – the immune system plays a central role!

Research

Doctor Ginerva Liptan is a woman who has written many books and blog articles on Fibromyalgia (FM) and the uses of LDN for its treatment. Dr Liptan is a specialist in FM and has had over 20 years of research, not to mention personal experience. She developed an interest in the subject after she became struck down with the disease during medical school. In one of her blog posts (on the medical website health rising), Dr Liptan stats that a Stanford University study showed a 30% reduction in pain in 2/3’rds of FM patients. The study found that 2/3rd’s of patients benefited significantly, with most receiving a 30 -40% reduction in pain (although some experienced a 60% reduction). However Dr Liptan also notes that the best results occurred when her patients combined the use of LDN with therapy to reduce muscle tightness.

Cree BA, et al., (2010) carried out a pilot trial looking at the effect of low dose naltrexone on the quality of life of Multiple Sclerosis patients, at the University of California. The study, involving 80 people, looked at the effects of LDN on quality of life of patients with Multiple Sclerosis. Significant improvements were found in areas such as mental health, pain and self-reported cognitive function. However no impact was observed on symptoms such as fatigue, bowel and bladder control, visual function or sexual satisfaction. The only adverse effects of taking LDN were patients reporting vivid dreaming during the first week of treatment. (Annals of Neurology 2010;68(2):145-150. Link here).

For CFS patients, there was the suggestion of LDN being combined with another drug (Trazodone – an antidepressant) to help with symptoms. Unfortunately however, a study was never commissioned but I am sharing this link from the Health Rising Blog as the comments underneath the post are quite helpful. There is a combination of current patients using LDN- noting their experiences as well as information that they have come across about the drug.

I would also suggest taking a look at the ‘Treating Chronic Fatigue Syndrome’ article on the Health rising blog too. It not only discusses the use of LDN for CFS but at the bottom of the page, it has a TON of links that may be helpful (such as other LDN websites, organisations and even social media forums where you can talk to other people who are already taking LDN).

Younger J, et al., (2014) carried out research in to the use of LDN as a novel anti-inflammatory treatment for chronic pain. The results suggest that LDN may be a successful form of treatment for chronic pain but more research with larger patient participation is needed.

Kariv R, et al., (2006) carried out a pilot study; Low Dose Naltrexone for the treatment of Irritable Bowel Syndrome (IBS). The study assessed 42 IBS patients reporting on degrees of abdominal pain, stool urgency/ consistency and frequency. After 4 weeks of LDN (0.5mg) per day patients showed an overall relief in symptoms and noted a number of pain free days. Using global assessment, the results demonstrated a 76% improvement.

Here is an article post titled ‘Top 22 scientific health benefits of low dose naltrexone’…. Im including it as part of the research section as it does refer to a few decent studies. However I do think the post is a tad biased as some of the studies (e.g. Those carried out with MS patients) have recently been re-tested only to find that there was no improvement in patients pain or other symptoms.

Overall there are TONs of research studies on LDN but many of them are too small or based on short term use. There are no studies looking at the long term implications of using LDN in any condition. There are also lot of contradictions – one study will show patients with improvements, whereas others will say there was no difference!

However I wouldn’t let that stop you from trying LDN if you are able to get a prescription. I will give more details below on my personal experience of using LDN as well as a few examples from other people I know who are also taking it.

My experience

I started taking LDN in December 2015 and although I had a rocky start, I soon began to notice the advantages of this little wonder drug! To begin with I foolishly began taking the medication on Christmas eve – which was a BIG mistake!!! I felt incredibly wired and couldn’t sleep at all – making me feel dreadful the next day, even though I had started on 0.5ml of the medication. I did sleep better the next night but had terrible nightmares and woke up a number of times sweating with my heartbeat racing! After a few days I began sleeping a lot better but the nightmares and night sweats continued for a few days as well as fluctuating each time I increased my dose (by 0.5ml).

Eventually after about two weeks I noticed I was sleeping much better. Before LDN I would spend hours trying to fall asleep, then when I did nod off, I would wake up about 4-5 times a night. Then I would wake super early and not be able to get back to sleep. I would wake feeling like my head was thick with fog, I found it hard to focus/ concentrate and I felt generally dreadful. I would spend all day feeling like I wanted to go back to sleep!

Since being on LDN I have found I generally sleep better – however I do find that if I don’t stick to a decent sleep hygiene**, my sleep does suffer. Overall I find that I sleep without waking so many times in the night and I find I take less time to fall asleep. Although getting better sleep might not seem like much – personally for me, my sleep is crucial to how I feel the next day. When I sleep better I tend not to have such a painful neck, I don’t feel as dopey (sleepy) and I feel much more able to manage my day and symptoms.

On a day where I have slept dreadful, I tend to find I will hurt myself more (accidently tripping over, walking into door handles, cutting myself on things); I will usually drop more things (which is how I have broken so many glasses!!), forgetting things I am in the middle of doing, such as the sink filling up or forgetting to shut the back door (after letting out the dog). I find my neck pain unbearable, showering and getting dressed takes much longer (than it already does) and I feel like I am one straw away from the camel’s back from being broken!! These are the days I tend to cry because I feel so frustrated.

**Sleep hygiene is basically following various habits or practices which aim to encourage the body to sleep better at night. It can involve going to bed at the same time each night, allowing your body time to wind down naturally so avoiding large meals an hour before sleep, not using blue light technology an hour before sleep, having your room at an optimal temperature, using a black out blind and for some people, using ear plugs.

I personally believe that using LDN in conjunction with other treatments can give the best results – Like Dr Liptan found that MS patients had the best results when using it with muscle therapy.

Since I began LDN I have talked to many other people either thinking about trying it, or already taking it and most of the people I have come across agree that it has had some kind of benefit. These benefits have included better sleep, better pain threshold (being able to tolerate pain better), a decrease in brain fog, overall improvement in all symptoms and improved immune system (get less colds, infections).

Where to get LDN?

Although Naltrexone has been FDA approved (at 50mg), the dosage of 3mg-4.5mg has not yet been submitted for approval as there is no current long term research for the drug. One of the reasons for this could be due to the fact that studies can cost many millions of pounds.

In May 2006, Professor Jill Smith of the Pennsylvania State University College of Medicine carried out an open-label trial that tested the use of LDN in Crohn’s Disease. As a result, the National Institute of Health granted her $500,000 to continue the study on a larger scale and placebo controlled scientific trials of LDN in Crohn’s Disease.

In the UK LDN is unlicensed (‘low dosages’ of 3-5mg) and therefore can be tricky to get hold of. In some forums (health forms for Lyme / CFS) I have come across many people who buy LDN from abroad. The issues with this are (1) you have no guarantee that what you are buying is safe and (2) they usually come in capsule form, meaning you need to open it up and work out the correct dosage – this would be quite tricky if you are trying to get 0.5mg!

As naltrexone IS a licensed drug in the UK (full dosage of 50mg), it’s possible that it can be prescribed for a condition other than that for which it was licensed, if the doctor feels it’s an appropriate treatment. However, when a doctor prescribes a drug ‘off-license’ (for treatment of an illness that the drug has not been approved for) they are directly responsible! This means that it’s highly unlikely that your GP will be willing to prescribe it.

There are some specialists that WILL prescribe LDN, such as those treating patients with MS and Fibromyalgia. Unfortunately it usually depends on the Doctor. If they are quite holistic in their approach and are well versed in the current climate for LDN you may be on to a winner. The best approach to take is to print off as much research as possible and take it with you to an appointment with a specialist in your area. It might be worth joining a forum for your health issue and finding out what other people have experienced. If someone in your local town has been prescribed the drug, you may have a higher chance of convincing the specialist.

Private prescription

I get my prescription from my private specialist who I see for Chronic Fatigue Syndrome/ Myalgic Encephalopathy. I had been seeing this doctor for almost 2 years when LDN was suggested as a form of treatment. I had been doing other things to help manage my symptoms such as changing my diet and setting a better sleep hygiene routine – in order to reduce inflammation/ reset circadian rhythm. My doctor writes me a prescription and I then send this on to a prescription delivery service where I then pay for the item (£20 per bottle) and they then post it out to me. The company that I use (who deliver the LDN directly to me) is Dickson Chemist who are based in Scotland.

Alternatively you could try a service like this one at Prescribe4me. It offers consultations with specialists who deal with prescribing LDN. You have to fill in a questionnaire which is then passed to a doctor who calls you back. There is no guarantee that the doctor will prescribe LDN for you – it will depend on your illness / other issues and other health circumstances. This service costs £30 (to speak with a doctor and £14 for the prescription and then the cost of purchasing the prescription). I don’t have any experience with it, so I don’t know how good/bad it might be.

Types of LDN

LDN comes in four types of medication, they are pills (capsules or tablets), Liquid, cream and sublingual drops. I have only ever used the liquid, which comes in a bottle and I draw it out using a syringe.

The form you take will all depend on your needs. Sublingual drops are helpful for those who struggle with absorption, whereas LDN cream is often used by children who don’t tolerate additives (which are often found in the liquid form). If you are building up your dose and need to do it very slowly then liquid LDN would be the easiest form to take.

Other

It is recommended that LDN is taken at night and the reason for this relates to the diurnal nature of endorphin secretion. Dr Bihari’s explanation is this …

“The reason the hour is important is that 90% of the endorphins are made in the middle of the night, between 2 and 4 in the morning. If a small dose of naltrexone is taken
in the late evening, generally at bedtime, generally endorphin production is boosted as much as threefold, 300%. The naltrexone itself is gone in about 3 hours, but the
endorphins remain elevated all the next day. So the naltrexone doesn’t significantly block the endorphins but does cause them to rise.”

If you are still unsure about LDN as a form of treatment for you then take a look at the following documentary. It’s a Norwegian documentary a (with English subtitles) and follows two presenters who go to find out what LDN is all about and it’s so called ‘super drug’ title.

Norwegian Documentary LDN – English Subtitles

Feedback

Thank you for taking the time to read this blog post – I hope it has been helpful to you. If you have any further information to add or want to tell people about your experience using this drug then please leave a comment below.

Links

MS Trust https://www.mstrust.org.uk/a-z/low-dose-naltrexone-ldn

Low Dose Naltrexone – http://www.lowdosenaltrexone.org

LDN Database – http://www.ldndatabase.com/

Journals/ Articles
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

https://www.ncbi.nlm.nih.gov/pubmed/17080248

http://www.lowdosenaltrexone.org/ldn_trials.htm

https://www.ldnresearchtrust.org/ldn-clinical-trials

http://www.bmj.com/rapid-response/2011/11/02/cfsme-patients-response-low-dose-naltrexone

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