I have had fibromalgia for 24 years, and it is a very hard disease to treat. I also have daily headaches with the fibromyalgia and occasional migraines and IBS. I was diagnosed 3 years ago with Hashimoto’s. I have taken everything for Fibromyalgia but the following work the best for me: Magnesium 2 200 mg tablets a day, Vitamin D3, Omega 3, B Complex, Probiotic, Vitamin C, Melatonin 5 mg for sleep, Flexeril for muscle pain, extra strength tylenol (ONLY AS NEEDED) and low dose of Naltrexone, 1 mg, 3 times a day and Voltarin prescription pain cream. Eating a high protein and low sugar diet AND staying away from caffeine helps me the most, diet-wise.

It’s important to keep moving as much as possible and keep your weight down. People truly do not understand both of these diseases if they do not have them. You have pain, soreness, stiffness, mental fog, trouble sleeping, severe fatigue and barometric pressure can flare up the pain. Long soaks in epsom salt help tremendously along with heat packs, and a massage tends to help tremendously. No two people are alike that have Fibromyalgia or Hashimoto’s – so it is not a one-size-fits-all treatment. I hope that some of these suggestions help others. God bless you – I understand!!

4/9/2018
V.a. 58 year old tbi, autoimmune passiviley trying to kill me for 40 years. Va with much fighting proved sarcadosis, inflamatory disease of some kind, ostiarthitis. Ie hard to type here. Headaches i lost a deacade of life with what some believe the worst headaches every recorded. Constant chronic pain, fybromalgia, reactions to meds. Headaches hormone, cluster constant, migraine and nerve. Resulting in tbi at the point of death. 3 years i gave va life or death altematum. Ldn or die trying. Started high kicked like a mule worked at 4.5-5. Its like a gumball you put a penny in you get a penny gumball a quarter a bigger. The va does not have this so here are 50mg pills you figure it out. It has stopped most all headaches, no side affects, stopped autoimmune attacks in which i hit the floor 18 times in 3 years. Slowed inflamation on location such as arthritis in back and fingers. It works electronicly in the body. The bodies nervous system opperates to a degree like an electrical circuit. This modifies that so that it does not over impact the neuro response. So in my case the headaches were my target it worked because of the blood brain barrier. I surmised that since opoids did work years ago for the pain this had to do a similar and that was correct. Since it works in the nervous system i figured it would work for my onset parkensons symptoms. Likely tbi but the same and it did. Where as the va are dip shits and like to cancel my meds its one reason i hit the floor. Cascade system failure causes the autoimmune to go from passively trying to kill me to activily. This stop the active but it cant fix the stupid. Sugar levels put strain onheart and neuropothy it cant fix the actual physical nature but the correct levels of those meds keep it down so the ldn keeps the auto immune in check. Ie ldn can control the systems but you still need the other meds to keep the system in balence. Bp gi diabetic meds hold things good then this will work for pain headaches and auto immune. The va and i quote neuro to mental health. Go ahead give it to him he cant hurt himself with it. Thats probably true to a point maybe. When they played with my meds testosterone and diabetic a real time occurance happend and i had to add prednizone and increase ldn. Cleaned my clock. Worked i also tried lower doses did not work. So as i said physical medication and factual issues do apply. As to what would happen with much larger dose i would not try. But i suspect only a person who needs this would be impacted by it. Ie if you have no issues your body would ignore it. My results started the same day i took it. As per take it at night after sleep meds i take zanex for sleep and before you get in bed sleepy. I already have a hangover type in am this is a minor less than it was and you will wake up like a bullet. I wake up 9 am pretty much on the dot. Wide awake. Like a wide awake drunk to some degree. Been on it 3 months.

I’ve been on 3mg for three weeks now and have not seen a BIT of improvement or pain relief. Should I continue to be patient or ask for a higher dose? My pain is greatly affecting my job and I’ve had to demote due to not being able to perform everyday. Can anyone offer advice? I have fibromyalgia, lupus, degenerative disc disease and RA (and of course the depression and anxiety all of the above caused) and the only thing that seemed to work (sort of) was Plaquenil but that drug scares me. Any info is appreciated.

I have been on LDN for 6 months. I have Sjogren’s, small fiber Neuropathy, autonomic insufficiency, raynauds, osteoarthritis in most joints. This drug has me feeling better than I have felt in years. I like to think of it as prednisone lite, with none of the side effects. I no longer take prednisone, azothiaprine or Plaquenil! Diet has also helped some. Gluten free, very little soy, no coffee or alcohol, little dairy and sugar. I am so pleased with LDN I want to tell everybody that hurts to try it!
I should mention, the first week on LDN I actually felt worse. The next 4-5 weeks I felt pretty normal for me. But then it was like a switch came on! Suddenly my pain was gone! Sure I still have arthritis, but feel so much better! Give it time, so worth it!

Hi, my husband began using LDN about eight weeks ago, along with Ketamine, and Tapentadol.

He has an extremely complex case of Peripheral Neuropathy, sensory in his feet. So anything he touches feels like tacks in his feet. This condition has been crippling him emotionally for a long time, but moreso the past five years. At the moment, he is extremely unwell from feeling nauseous and cannot hold food or drink down. We are not sure what the cause is, but LDN is the only new drug he has been taking, and for three weeks now has been feeling really like crap. His full dose of LDN was reached almost one month ago after a buildup for 27 days.
He was in hospital overnight, came home feeling a lot better after receiving 6lts of fluids due to being dehydrated from not being to hold anything down. Felt fine when we left the hospital. Came home, had his 4.5mg dose of LDN, as they didn’t have it at the hospital, and within an hour was feeling dreadful again.

We are thinking maybe this medication is causing the problem. Has anyone else had the same symptoms? What did you do to alleviate them? The pain in his feet is no better.. so we don’t know whether to continue on or just wean off the LDN.

Amy on 11/17 posted about 50 mg in 50 ml of water. I use 2 pills (=100 mg) dissolved in 100 ml (3.5 oz) of filtered water, & take 1-4.5 ml, in free syringes from pharmacy (given for children’s liquid meds). 100 ml is a month’s supply. The liquid form is stable: see “Formulation and stability of naltrexone oral liquid for rapid withdrawal from methadone,” by Fawcett JP1, Morgan NC, Woods DJ., in Ann Pharmacother. 1997 Nov;31(11):1291-5. “Abstract: Objective: To assess the stability of naltrexone oral liquid prepared from tablets and powder … Conclusions: Naltrexone 1 mg/mL oral liquids prepared from tablets or powder are stable when stored in the dark for 60 days at 4 degrees C and for 30 days at 25 degrees C. …”
Viewed at https://www.ncbi.nlm.nih.gov/pubmed/9391680 PMID: 9391680 DOI: 10.1177/106002809703101102

I use LDN daily with my chronic pain, autoimmune, RA, LUPUS, Hashimoto’s patients! I personally us it at 3.0 mg for my Lupus and my hand pain (along with food elimination) is gone! My patients love LDN and many tell me they feel better than they have in years on LDN. I generally use anywhere from 1.5-4.5 mg. It’s a shame to me that big pharma doesn’t get on board and realize that our bodies are designed to heal themselves! We simply have to give it what it needs. Keep up the good work! I share your podcasts weekly with my Facebook community!!
Dani Williamson MSN, FNP
Integrative Family Medicine
http://www.danwilliamson.com

I tried LDN for fibromyalgia and very carefully titrated the dose. It does not work for everyone, despite many online cheerleaders. When I hit 2.5 mg, it upregulated my fibro pain to intolerable, the opposite of helping. I also experienced several terrifying nightmares. It’s a real medication so don’t underestimate it because it 1/10 strength of naloxone.

Below is a letter I wrote to my rheumatologist in November 2015. She had diagnosed me with mild-moderate rheumatoid arthritis (RA) in November 2012 (age 57). I am grateful to have to opportunity to thank you both as one of your programs helped me find LDN. I continue to be free of RA symptoms and consider myself cured.

Dear Dr. xx,

I write to let you know how I am doing in hopes that my story might be of interest to you and that others might benefit from my experience.

Since I saw you last in spring of 2013 I have managed to heal my RA completely – meaning I have no RA symptoms at all – no swelling, no pain, and no loss of ROM (range of motion) – nothing. In fact I feel better than I have in years.

As you may recall I presented to your office in a lot of pain in November 2012. After your workup, including x-rays, labs and a clinical exam you diagnosed me with mild-moderate RA. You were patient with me as I struggled to accept the bad news. I delayed starting methotrexate in hopes that my thyroid medication would help my symptoms but by early January 2013 I agreed to begin methotrexate at 10 mg/week.

You may also remember that I very much wanted to find an alternative treatment approach. I shared an article from the New York Times Magazine (The Boy with a Thorn in His Joints) that was similar to my story and similar to the approach I wanted to take. The article described a 3 year old boy with RA whose mother found that the source of his problem was intestinal permeability. She treated him with dietary restrictions (no gluten, dairy, and nightshade vegetables), Chinese 4 Marvels Powder as well as methotrexate for a time.

After reading that article I decided to find a doctor who might be familiar with 4 Marvels Powder and who would also be able to help me heal my leaky gut. I found Dr. XXXX. She started me on supplements including probiotics, IP6, D3, methyl B12, curamin, L-glutamine and fish oil.

A few weeks after my first appointment with Dr. xxxx I happened to catch an episode of The People’s Pharmacy. The guest was Paul Ewald, PhD. He was discussing his research on infectious causation of some autoimmune disorders and some cancers. As my RA onset was sudden and followed a flu shot and antibiotic treatment for a sinus infection I had wondered if the sinus infection and/or the antibiotics could be at least part of the cause of my RA in conjunction with my leaky gut. This led me to the web to search for medications that might address “RA caused by infections.”

I found articles about Low Dose Naltrexone (LDN). I was familiar with Naltrexone from my work on an HIV prevention clinical trial for injecting drug users that included treatment with Suboxone (buprenorphine/naloxone). Both Naltrexone and Naloxone are opiate antagonists.

As you probably know Naltrexone is an older FDA-approved drug for treating opiate addiction at 50 mg daily. I started LDN at 1mg per day in June of 2013. With Dr. xxxx’s help I tapered off the methotrexate and tapered up the LDN over 6 weeks until I was off methotrexate and taking 4.5 mg of LDN daily.

I continued on 4.5 mg of LDN daily from June 2013 until May of this year. I hesitated to stop it but I needed a screening colonoscopy and was advised to stop LDN 10 days prior to my procedure. My RA symptoms never returned and I have not returned to LDN.

Dr. xxxx has followed me closely and my labs have shown no liver or kidney issues at all. I also had a repeat set of x-rays in January 2014 (no methotrexate for 6 months and LDN for 6 months) that showed no progression of arthritis. My symptoms had certainly improved on the methotrexate and I will never know if that caused my remission (or cure as I like to say) but I do know that I have been off methotrexate for well over 2 years and now off LDN for over 6 months and I have no symptoms.

In fact I am well enough to be accepted into the Peace Corps. I leave in January 2016 for 2 years in South Africa. A diagnosis of RA is usually cause enough to be denied according to their literature. I am sure that because I have been symptom-free for so long and now medication-free as well that they feel I am healthy enough to serve.

I hope my experience will be of interest to you and that you will explore intestinal permeability (leaky gut) and Low Dose Naltrexone. RA is such a disabling disorder and while I know my experience may not be typical I also know I am not the only person who has found that diet change and healing intestinal problems can significantly reduce RA symptoms.

Kind Regards

Is this low dose the one you are familiar with?

I have been using 4.5 mg nightly for 1 month. It is dramatically improving my rare idiopathic dystonia my neurologist thinks is neuroinflammatory in nature. LDN acts to reduce neuroinflammation. I can walk and type and work again with no appreciable side effects.

I am over the moon happy to return to gentle hiking in my favorite mountains. There is a desperate need for more research and so very many people who could benefit. And yes, my first rx of LDN was very expensive but now I just found a more reasonable compounding pharmacy from a friend.

Good book on LDN is by Elaine Moore and Samantha Wilkinson, available on Amazon. I believe that neuroimmunology will be the most exciting area to break open our understanding and treatment of diseases in neurology, psychiatry, and rheumatology, just to name a few.

We need to press for real NIH and NIMH research into neuroimmunology across diseases and across medical disciplines. I am a living experiment benefiting from LDN thanks to an unusually smart and open minded neurologist.

Thanks, People’s Pharmacy, for spreading the good news about LDN!

I use naltrexone off patent too for trichotillomania [hair pulling]. It has been a godsend and helped me more than I ever thought possible. (I’ve struggled with the disorder for almost 40 years).

LDN made a major change in my life! I can function much better during the day; my pain levels and ability to focus have improved greatly, and I can enjoy life again. My fibromyalgia and other autoimmune symptoms have definitely abated. The only side effects for me are insomnia and vivid dreams, which I will GLADLY exchange for what I suffered before LDN. These symptoms did taper off after several weeks.

I found that my rheumatologist was most unwilling to prescribe it and wasn’t willing to even investigate it; he wanted to prescribe plaquenil and other drugs with side effects. However, my primary care doctor was willing to prescribe it after I asked him about it.

I am so thankful for this drug! I take 5mg every evening. I tried taking it in the morning to try to help my insomnia, but it seems to work better when I take it at night. My insomnia is much better than it was than when I first started taking it, in any event.

Could the pills be safely divided by using a water titration method? I used this method to taper off Klonopin. Buy a 100 mL graduated cylinder, mortar and pestle, and a syringe (like used for giving kids medicine). Pulverize a pill using the mortar and pestle, then dissolve it in 100mL of warm water. If you started with a 50mg pill, you’d just take 10 ml of the solution.

LDN is widely used in the rheumatic community. Instructions are online on how to make a solution of 50 ml water with a 50mg tablet. Then you have 1 mg per ml for accurate dosing as compounding is pricey. LDN modulates the immune system. There is much info on it in the book, Honest Medicine. It even helped with my dreaded seasonal allergies with no side effects for me.