Reprinted with the kind permission of Cort Johnson and Health Rising.
Dr. Liptan came to specialize in fibromyalgia after coming down with the disease in medical school. She employs an integrative approach to the disease which includes, as she says in the interview, “anything” that has data behind it. She’s been studying the disease for 20 years, frequently blogs, and is the author of a well-received book called The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor.
Some people don’t feel comfortable looking outside the basket of approved therapies for a disease, but there’s good reason some people with FM might want to do so. A 2013 study following over 3,000 FM patients found little change in pain, fatigue and quality of life scores over 11 years. A 2015 review concluded that lack of efficacy and/or side effects would cause most patients to probably stop taking FM drugs.
Several blogs (Three Letters You Need to Know if Have Fibromyalgia: LDN, Combine Opiate and Opiate Blocker for Less Fibromyalgia Pain, an audio interview on LDN radio, and her book were used to suss out this experienced fibromyalgia practitioner’s use of LDN in fibromyalgia.
Basic Treatment Plan
Dr. Liptan’s personalized treatment plan focuses on four main areas:
Rest – Improving quality of sleep, when muscles do most of their repair and regeneration
Repair – Improving muscle function and reducing trigger points via massage, trigger point injections and gentle stretching
Reducing systemic inflammation – dietary changes (gluten, dairy, sugar), supplements and other treatments
Restoring hormone balance
Her most important supplements (fish oils, turmeric, healthy omega fats, good quality B-vitamins, vitamin D) improve and sustain good nervous system functioning and reduce inflammation. She also uses COQ10 for energy and nerve support.
Worrying that she will overwhelm patients’ ability to take supplements (or their pocketbooks), Dr. Liptan is a minimalist with supplements. She’d much rather have people spend money on massage therapy than supplements.
Low Dose Naltrexone and Fibromyalgia
Low dose naltrexone doesn’t get a lot of space in Dr. Liptan’s book (a couple of pages), but she’s done several blogs lately on it. In her book, she calls LDN “the most effective way to reduce spinal cord inflammation.” (The spinal cord is where the pain sensitization process in FM appears to start).
Dr. Liptan believes that brain inflammation largely causes the pain problems in FM. LDN doesn’t come into play in her treatment protocol until after she’s addressed her four main areas and finds FM patients still have a high degree of pain hypersensitivity. When that’s the case, she finds LDN to be quite helpful in turning down the volume of pain signaling.
(Note that Liptan’s program is holistic in nature – all the pieces need to be employed for the treatment package to be most effective.)
Dr. Liptan noted that a Stanford study showed a 30% reduction in pain in 2/3 of FM patients – better than virtually any pharmaceutical drug. About 2/3 of her patients benefit significantly; most receive 30-40% reductions in pain, some get 60% reductions in pain. Her best results occur when her patients combine LDN with therapy to reduce muscle tightness. That’s apparently when she sees the sleep improvement that’s so necessary to help the body heal.
Benefits are usually seen within a week or so, and then she slowly increases the dose. The most pain benefits come at around 3-4 weeks. She recommended that FM patients take LDN for about a month before giving up on the drug. (Jared Younger recommends 6 weeks).
Taking LDN for 3, 6 or 9 months might give you some residual benefit for a time, but most people have to take it indefinitely. Some people get help with fatigue, but other parts of the program such as sleep and diet need to be in place for that to happen.
Side Effects and Dosing
Comments on LDN blogs on Health Rising indicate that side-effects can sometimes be quite significant. In her book, Liptan suggests that side effects probably result from dosing issues and that in her experience “side effects are minimal when the dosage is increased slowly.”
In one of her blogs, she notes that many providers don’t have the training or expertise in LDN needed to make dosage adjustments. She recommends that patients make slow and incremental increases in the medication.
In The Fibro Manual, Liptan recommends taking LDN 1.5 mgs at night for fourteen days, followed by 3 mgs at night for fourteen days. If that’s tolerated, increase LDN to a maximum of 4.5 mgs for long-term use.
LDN and Candida
Because LDN calms down parts of the immune system, there’s concerns that using it could increase the risk of infection. (LDN affects immune cells which show up in the brain as glial cells and in the periphery as macrophages.)
When asked if LDN’s immune suppressant properties could cause Candida, she said that many people with FM suffer from Candida overgrowth. The overgrowth, she thinks, is the result of a sleep deprivation triggered fight or flight response which suppresses the immune system. The first bug to move in when that happens is Candida in the gut and in the sinuses. (Sinus infections, it turns out, can be caused by both bacteria and viruses.) Candida overgrowth in the gut in turn produces toxins, which cause more pain, fatigue and brain fog. She uses diet and probiotics to treat Candida.
While LDN theoretically could be inhibiting a necessary immune response, clinically Dr. Liptan said that her experience is that as long as FM patients are keeping their Candida in check through diet and probiotics, adding LDN does not cause the problem to come back.
Sleep Issues – LDN can occasionally cause sleep issues. If that happens, Dr. Liptan suggests taking LDN in the morning instead of at night.
Gabapentin and LDN – One person asked if she has to be off gabapentin (Neurontin) before she can try LDN. Dr. Liptan replied that because the two drugs work on different mechanisms in the brain, there’s no reason she can’t be on both drugs at the same time. One – gabapentin – slows down nerve transmission in the brain (Dr. Cheney used gabapentin (Neurontin) for chemical sensitivities), and the other reduces the activity of the immune cells in the brain and spinal cord called glial cells.
The LDN / Opiate Quagmire
Dr. Liptan called the LDN/opiate question a dilemma wrapped in a quagmire. Opiates are very beneficial when used short-term, but are less effective and can create problems like tolerance and increased pain sensitivity when used longer term. They can block some pain signals while ramping up other ones.
About half of her FM patients, however, find opiates necessary and are sometimes on high doses. Because LDN can tip opiate pain-killer users into withdrawal, the high rate of opiate use (opiates are probably the most-used drug in FM) constitutes Dr. Liptan’s biggest constraint in not giving LDN to more of her patients.
The naltrexone in low dose naltrexone was, interestingly, actually created from a synthetic opioid called oxymorphone. Tweaking oxymorphone slightly turned it from an opioid receptor enhancer (i.e. it turned on the receptors that control opioid pain relief in the body) to an opioid antagonist (it filled those receptors preventing them from turning on).
Blocking those opioid receptors for a short period of time appears to cause the central nervous system, in an attempt to get the opioid system back on track, to create more receptors and to produce more feel-good endorphins. Tricking the body into thinking it’s missing opiates can also, however, quickly trigger nasty opiate withdrawal symptoms (increased pain, diarrhea, vomiting, nausea, restlessness, sweating, anxiety, abdominal cramping, fast heart rate, insomnia, tremor and others) or increasing pain levels.
The opiate withdrawal problem limits Dr. Liptan’s ability to prescribe a drug that she finds is mostly side-effect free, cheap and is often quite helpful. The LDN/opiate area is one that she feels vitally needs more research.
She notes that taking long-acting opiates (fentanyl, MS Contin, methadone, Oxycontin, Butrans or Tramadol ER) largely preclude the use of LDN. Theoretically, FM patients taking occasional short-acting opioids should be able to take LDN after the drug washes out of their system in about three hours. Dr. Liptan, though, has found that sometimes that’s not enough. In her book, she advises patients using “occasional short-acting pain meds to take them at least six hours apart”.
Some people can go on LDN after getting off opiates for a week, but in general, Liptan, recommends that most people taper off opiates for two weeks before introducing it. (Then there’s the slow ramp up time – as much as a month or more – needed for LDN to take effect. It’s no wonder Dr. Liptan is having trouble getting FM patients to switch over from opiates to LDN.)
The Ultra-Low Dose Naltrexone Opiate Fix?
Taking an ultra-low dose of LDN (ULDN – .5 mgs or less) could be a way out. In fact, some evidence suggests that ultra-low-dose naltrexone can actually help opiates work better in patients.
Because long term opioid use can actually increase pain sensitivity by irritating the glial cells in the spinal cord and brain, it’s possible that ultra LDN could, by reducing glial cell sensitivity, actually restore opioid effectiveness and reduce tolerance to the drugs. At very low doses (0.5-1 mg), it appears to be able to calm down glial cell activity while not blocking the effectiveness of opioid painkillers.
Leavitt suggests that ultra-low dose naltrexone (as opposed to low-dose naltrexone) may be able to reset the opioid pain killer system in the same way that rebooting a failing computer can reset it.
The results can be startling in some patients. One report indicated that some people who were in intractable pain on high doses of opioids were able to reset their opioid response system and get more benefit from lower doses of opioids by taking ULDN. (This process may work better with some opioids (buprenorephrine) than others (morphine).) The research, unfortunately, as so often occurs with naltrexone, is spotty.
In March, 2016 Dr. Liptan reported that she was going to begin trying ultra-low dose naltrexone in a few “brave” patients on opioids. A year later, she reported that the protocol can work, but that many are leery of tinkering with their meds for fear of precipitating opioid withdrawal symptoms.
In April of this year, Dr. Liptan reported that she was keeping the doses of the ULDN protocol at 0.5 mg or below and that it takes 3-4 weeks to see an effect. An administrator from a Facebook group called NOPE Non-Opiate Pain-relief Experiences: ULDN / Naltrexone & other options reported that the group has found that even lower doses (10 mcg to 500 mcg (0.5mg)) can be more helpful.
The ULDN/opiate protocol is clearly still in its experimental stages. If it works, an added benefit could be reduced constipation – a common opiate side-effect. A drug combination of extended release oxycodone and naloxone (2:1 ratio) approved for use in both Europe and the U.S. appears to be able to help with constipation.
About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.