LDN for Multiple Sclerosis
I have been using more and more LDN (low dose naltrexone) over the last few years, with some amazing results. It works best for all forms of auto-immune diseases, but has helped in PTSD, restless legs, burning mouth/vagina syndrome, cancer, and sometimes in depression. Its main advantages are low cost and few side effects. Not everyone responds well, but most sufferers of these conditions do not have much to lose by trying it, especially in serious conditions like MS, Lupus, Cancer and Rheumatoid arthritis.
An LDN User Story: Wendy Lowe Shares Her Experience Using LDN for Multiple Sclerosis
Multiple sclerosis (MS) is a disease of nerve demyelination, in which the protective covers of nerve cells that provide insulation are damaged. The name of the disease refers to scars (sclerae—referred to these days as lesions or plaques) that often appear on the brain and spinal cord. This damage has the potential to disrupt the communication between the brain and the rest of the body, thereby causing dysfunction and damage. A wide variety of physical and/or mental impairments can result.
Between 2 and 2.5 million people are affected with multiple sclerosis globally. The disease usually begins between the ages of 20 and 50 and is twice as common in women as in men. The cause of MS is not yet clear, and there is no known cure. Treatments try to prevent new “attacks” and improve symptoms/functioning after an attack. Medications used to treat MS have varying degrees of efficacy, but can have serious negative effects and be poorly tolerated. Many people with MS seek out alternative treatments for their disease.
Wendy Lowe, who lives in Sheffield, UK, offered to share her experience using LDN as a treatment for her multiple sclerosis.
How and when did your health difficulties start?
When I was 22, and in training as an Occupational Therapist, I went through episodes in which I would get lost, be confused, and have hallucinations. It was terrifying. My general practitioner (GP) laughed at my terrifying account, “You’re a student, aren’t you? Lay off the drugs!” I’m a Mormon. I don’t even drink alcohol, tea or coffee, let alone do drugs! I was furious. I continued having (what was later discovered to be) “partial complex” seizures that would cause me to wander about, kind of like sleep-walking. Later, my hometown GP sent me to a specialist in epilepsy who did an MRI; the scan revealed scarring in my brain and possible evidence of mini-strokes. He put me on carbamazepine, a standard seizure drug, and I experienced a brief respite from my seizures.
A few months later, I woke up with very disturbed vision: there were hundreds of black “floaters” (little black blobs) in my vision. I couldn’t read. My optician said in a grave voice, “You need to go straight to the Emergency Room. You may have detached your retina.” The staff at the hospital didn’t tell me the reason why I couldn’t see properly out of my eye. I was told that the hundreds of floaters might fade over time, turning into grey shadows I might be able to read through. They said there was nothing they could do for me. They covered my eye with a patch and I looked like a pirate!
When and how did you receive your diagnosis?
One day at work, I was having a student take notes for me because I was not able to hold onto a pen. The head of our Mental Health team (a psychiatrist) patiently watched me struggle through the conference, and then later told me to go home (via the hospital!). After having an MRI done, I was immediately diagnosed with multiple sclerosis. Was it a big horrible shock? No. I felt like shouting it from the rooftop! My frequent mystery illnesses finally had a name. I was relieved because I knew enough neurology to know that MS was the not the worst of the neurological conditions I had been tested for. It had taken 7 years to get a correct diagnosis.
What treatment did your health care team recommend?
Later that year after I had another relapse that landed me in the hospital for a week, my neurologist explained there were new drugs on the horizon for MS, but told me the best treatment she could prescribe for me at that moment was “to get pregnant”! My husband and I had been married for 8 years; I explained to him that we needed to get pregnant, and we did. That year, 2004, I had never felt so well in my whole life. We had a little girl, whom I breastfed for a year. I then decided to take the neurologist’s advice to start taking medicine. I had the full range of disease modifying drugs to choose from, but she strongly advised that since my MS was “aggressive” Rebif® (interferon beta-1a) would be my very best hope.
How did the recommended treatment protocol work for you?
I took Rebif® for 5 years but continued to relapse. My weight was at times dangerously low due to having vertigo/vomiting relapses. Additionally, in 2006, I developed optic neuritis in both eyes at the same time, and became totally blind. The doctors told me to expect the worst because my optic nerve had been so repeatedly damaged with each relapse and inflammatory exacerbation. Eventually, my vision started to return very, very slowly. My color vision was still weird, but I could see well enough to recognize people, which was a huge improvement.
I hated the every-other-day Rebif® injections. They hurt, bruised badly, and gave me very intense fake-flu symptoms. These years were full of every infection you could possibly imagine. I had lots of ear infections, chest infections, pneumonias, and even a C-Difficile (hospital superbug) infection. I had been taking the disease modifying drug Rebif® for 5 years and although I believe it had not made me any better, my disease was indeed “modified”: it had developed lots of other conditions to keep it company!
How did you find out about LDN and what did you think of it?
I’d known about LDN for about 3 years from a friend at the MS therapy center. However, being so deep in the “medical model” due to my profession, I considered the only adequate proof of medical benefit to be a double-blind clinical trial, repeatable and large-scale. Since LDN had no such research, and anecdotal claims didn’t really “touch” me, I could ignore it quite easily. Given my professional background, I have some sympathy for doctors who respond to reports of LDN efficacy by saying “it cannot possibly be true.” But, yes, it can be.
Were there other obstacles to choosing LDN as a treatment?
I was under the incorrect impression that one could not take LDN if one also needed to take opioid medications in the same day. I was taking heavy duty pain killers to get through the day and I was too scared to forgo them, so LDN had not seemed like an option. What I did not understand was that there are ways to use heavy pain killers and LDN by staggering the medications appropriately (consult your healthcare professional about this). The irony was, once I actually started taking LDN, my pain was so relieved that just ibuprofen and acetaminophen worked fine, and I haven’t needed the heavy duty stuff anymore.
What ultimately made you change your mind about trying LDN?
I was so ill from fake flu symptoms caused by the Rebif® that I was living my life around side effects. I was not going to do that while my sister was visiting in 2009- I wanted to spend time with her. So I decided to not take my Rebif® during her visit. I felt so much better. After being off it for a month, I decided to quit it totally. My little girl was starting school for the first time, and I thought: she’s got a new life starting, maybe this is my chance to start a new life too. I decided I had nothing to lose by trying LDN.
What were your doctors’ opinions about LDN?
I spoke to my neurologist about it, and she said that there are three types of drugs she would definitely not prescribe: “the mad, the bad, and the dangerous”. She said LDN was certainly not dangerous, and not bad (illegal or people making a lot of money off it), so that just left “mad” (crazy). I responded, “Well, so is MS, and so am I! So it will suit me well.” She made it clear she did not agree with my decision and claimed LDN was “just a placebo.” But I had heard what I needed to from her: it wasn’t dangerous. So I was going to go for it.
How much LDN do you take, and what changes in your condition have you experienced?
Although I now take 3.5mg of liquid LDN each night, I started with 2 mg. On Day 1, a miracle happened. Almost every night, I experienced severe arm and hand spasms. I would look like I’d had a stroke: my right arm would curl around as tightly possible and I’d wake with my right hand clawed into a spastic curl so tight I was unable to move it. I had to wear a splint on my arm so tight that it would frequently dislocate my shoulder. It was very painful. But after the first dose of LDN, none of that happened. I had a comfortable, mobile right arm and a basically functional right hand. My right hand was slightly swollen for about an hour, which was unusual, but I took one look at that arm and that hand– and I knew that this was definitely not just a placebo effect. From the first dose of LDN, my nightly arm spasms had gone.
Also that first morning, I opened my kitchen blinds and saw my garden fence for the first time in three years: my distance vision had improved overnight. My eyes were also not uncomfortable for the first time in longer than I can remember- years and years. They had hurt so much (a shock of pain through the back of my eyes) when I’d look left to right or up and down. But since that first day on LDN, I’ve had no pain. When my family and friends would ask me, “How are you, Wendy?” I would joke, “Things are looking up!” because for the first time in ages, looking up didn’t hurt. I still think it’s wonderful to have pain-free vision.
I also used to need round-the-clock medication to be comfortable, but upon starting LDN I was immediately able to begin reducing those medications. I have not experienced another day with the daily pain I used to have. Now, I have no pain and so much more energy. I have a more functional body that does what I expect it to do.
Did you experience any side effects from LDN, and if so, how did you manage them?
I had nightmares the first couple of weeks, and I kept thinking “Wow! Stephen King would be proud of that one!” But because I’d been through such horrible side effects and illnesses from other medications, it didn’t faze me. Having a silly dream from time to time is a really mild side effect. Also I find that if I take the LDN when I’m wide awake, I tend to stay awake until 4am. So I wait for myself to start yawning, and then I know I’m tired enough to take it, and go straight to bed. This way it doesn’t disturb my sleep.
What overarching message would you like to give about LDN?
I would encourage people to strongly consider taking it. You’ve got nothing to lose. Actually, you do have something to lose. LDN stopped my disease progression in its tracks. I wish I had started it sooner as I may have avoided a lot of the irreversible damage my disease caused during the years I was not taking it. I want people to be aware of this so it doesn’t happen to them. I even carry cards with information about LDN to give out. I tell people: just go and inform yourself. There is help, but you have to pursue it and be persistent.
I wish everyone the courage to do what’s best for you,
More about Wendy:
Our little family consists of me, my super husband, our daughter, and our cat. We live on the edge of Sheffield, the fourth largest city in the UK. I “should be” housebound, I suppose, but I’m too nosy! I go outdoors and do things. I have lots of friends. I go to church. I’m quite happy really.
Sadly, due to my illness, I only managed an Occupational Therapy career for seven years. I loved my job so much- especially the creativity of finding solutions to challenges. When I developed MS, I learned to do this first-hand by treating myself as a patient. One day I couldn’t get my leg to move whilst walking home- it dragged as I attempted to walk. I wondered if a short circuit in the ‘walk’ program of my brain could be overcome by using a non-reflex, learned movement like skipping. It worked. I skipped home! Helping patients by finding solutions like this was a big part of what gave me joy from my work. I dreaded the idea of giving it up and it took me a long, long time to come to the conclusion that I wasn’t going back. But I’ve discovered that there is life beyond work. My life is okay. It’s good. There are a lot of other things I can do to be happy and be helpful to other people.