“The most effective way to reduce spinal cord inflammation” Dr. Ginerva Liptan
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 3000 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.
- Check out Health Rising’s latest LDN blog below:
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
LDN is one of the few things that I can say to people that the odds are pretty good that …(it) can reduce your pain. Dr. Ginevra Liptan
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.
Freedom from Fibro Summit Encore Weekend – Watch Any Presentation
Watch any of the 40-plus presentations from Dr. Murphree’s Freedom from Fibro Summit for free this encore weekend. If exploring alternative health options is something for you – or if you just want to explore what’s out there – Dr. Murphree’s Summits provide a great overview of the possibilities this large field of medicine presents.
The Summit provides simple techniques to reduce pain and anxiety, provides updates on the latest research, diet options (one of which has helped me greatly), ways to boost energy, the latest on fibromyalgia research (my presentation), etc.
Click here to check out the encore weekend and here to see a prior blog on it.
(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 the Stanford study showed a 30% reduction in pain in 2/3rd’s of FM patients – better than virtually any pharmaceutical drug. About 2/3rd’s 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?
The key is finding the dosage sweet spot where LDN is able to calm the glial cells, but not knock the opiates off their receptors. Dr. Ginerva Liptan
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.
LDN Dosing and Effectiveness Poll
- Check out Dr. Liptan’s website and sign up for her blog here.
The annual 2017 LDN conference that takes place in Portland from Sept. 22nd-24th this year will be livestreamed.
Learn more about taking LDN, how to get it, etc. in Health Rising’s LDN, FM and ME/CFS resource center:
It’s true that my doc did not start me off slow enough, but even taking it in the morning made my sleep worse. I felt like I had more energy during the day, but sleep was hard and as that is the worst, I quit taking it. Also, $50 a month is not cheap!
Good point. $50 a month is not cheap. I agree.
When I decided to try LDN (4.5mg), it bought it on the Internet for $45 for a 1-month supply. It was more than I could afford to kee3p up, but it was cheaper than $50, required no Rx, and it worked very well. I enjoyed improved sleep, but they may be owing to the fact that I took it at night along with Trazodone (a sleep aid). I did not take the LDN without Trazodone. For the month that O took it, I did exceptionally well with symptoms across the board. I wish I could find a doctor who was not reticent about prescribing LDN, because my insurance covers it with a prescription. (I live in Northern California, and doctors tend to not be very “progressive” in my area.)
My doctor wrote me a script for a few pills of the 50mg, so it’s super cheap for me (maybe a few dollars a month). I do have to crush and dilute it to dose it though (and get all the math right, which is hard with brain fog, so my partner helps). My doctor gave me all the supplies and instructions.
“Because LDN calms down parts of the immune system, there’s concerns that using it could increase the risk of infection.” I was put on LDN about 9 months ago for my ME/CFS (not my fibromyalgia). At least 1 part of my immune system has improved. For over 2 years my NK cell count was 4 and we tried everything possible to increase it with no effect. At the last lab check in June it had climbed to 23. I’d be curious as to other LDN patients’ experience.
I recall stumbling upon a study where LDN + garlic improved NK cell count (or possibly it was NK lytic ability. Both are good). Echinacea and melatonin have been shown to boost NK number/function too. All the more reason to fix sleep issues.
As for LDN weakening the immune system, it shouldn’t weaken the response to candida. LDN reduces inflammation by blocking TLR4. As far as I’m aware, fungal motifs are recognized by a different receptor, TLR2. For example: “Toll-like receptor-2 is essential in murine defenses against Candida albicans infections.”
and “Role of TLR1, TLR2 and TLR6 in the modulation of intestinal inflammation and Candida albicans elimination.”
This is interesting: a study where TLR4 activation contributed to fungal overgrowth: http://iai.asm.org/content/78/3/1078.full
Please share what methods/protocols were used to attempt to increase your NK cell count? Mine is also low and I’m told there is nothing that can be done.
Cort, for me, you need to add “I tried LDN and it worsened my symptoms” to survey.
I agree with StevefromMA. Tried LDN for M.E./fibro and couldn’t tolerate 0.5 ml without nasty side-effects. Dropped right down to just a couple of drops, built up so sloooowly to 1.5 ml. It seemed to help pain, but I couldn’t cope with other side-effects. Had been struggling with undiagnosed PoTS and I think it possibly magnified those symptoms. Stuck it out for several months but felt much better after stopping!
Dr. Liptan’s treatment plan would benefit a wide range of people, not just those with fibro. It seems to be the first line of defense against stress and, thus, would decrease inflammation. Great benefit for all.
Quality sleep for Dr. Liptan’s is paramount as it is with many ME and fibro docs. That being said, and after reading everything on your site pertaining to LDN, Cort, how would one fare at the beginning of LDN treatment when sleep seems to tank?
I’ve had a script for LDN for over a week at 4.5 mgs. waiting for pick up at the compounding pharmacy. I haven’t picked it up for several reasons: it’s a 4.5 mg capsule and I don’t know how to lower the dosage with any type of accuracy, it seems 80% of reviews are negative about this drug, and it has a $90. price tag.
Yes, more negative than positive reviews which surprises me. The studies, while small, used 4.5 mgs and didn’t have a lot of side effects. On the other hand we got quite a few negative reports and Dr. Liptan urges that one slowly ramp up…I wonder if the pharmacy would have an idea of what to do?
One thing to remember is that people who are doing well on treatments are probably not reading this blog as much as those of use who are not doing so well.
I gathered from reading Dr. Liptan’s writings that sleep doesn’t always or even mostly tank while on LDN – just that sometimes it does.
You can remove that issue entirely if its a concern by taking LDN earlier in the day…
i am a 58 year old male with fibro and cfs in north dakota been on LDN and guaifenisen protocol for 23 months some better my fibro is reversing from guaifenesen has anyone else tried guaifenisen protocol does help with fibro my cfs is severe can not work but am getting some better
I was under Dr. St. Amand for a short time. From my own observations and his mapping, I do believe guai works on muscles as advertised, however it does so. Beyond his book theory, he told me guai is also a blood thinner.
At the time though, fatigue was my main issue, and I felt Effexor XR and Klonopin (really the former) helped that the most. The blocking negates trying herbs; some contend you just need more Mg, or guai does zip for your NK cells, etc. St. Amand definitely’s no rip-off artist and rightfully dropped me an non-compliant to make room for other patients. But I think his theory’s simplistic and the practice soon backed off to admit guai wasn’t a cure-all for everyone.
However, 13 years later my upper back is an absolute mess and ice picks up the neck can incapacitate. Any “calming” from Klonopin doesn’t compensate for too much PC time and not enough exercise. So I wish I’d continued guai regardless, but most off-the-shelf forms contain other ingredients. I wonder if you’re getting yours compounded.
I read with interest the blog and also the comments. I am reluctant to take any drugs as I have had so many adverse reactions. I occasionally take an aspirin as the doctor recommended that I take 81mg daily, but that is too much for me. (easy bruisability) When I need something to help me with phlegm when I become congested due to environmental changes, I use a very small amount of a oral bronchodilator with guaifenesen. The puffers are too drastic for me. I carry out a regimental routine of healthy diet, exercise and stress reduction, both positive and negative and over-stimulation which tires me out completely. I recently purchased for $139.00 Canadian a TRUMEDIC insta Shiatsu. full body massager with heat. It is the best treatment that I have ever had for twenty years as I can personally control the pressure, the heat, the locations on my neck and back so that I can do my own massage therapy without getting more stressed out while lying down waiting for a therapist to touch a tender point that may make my agony worse. This machine is available at Cosco and I would recommend it totally.
I have had FM for approximately 25 years but can associate symptoms since having mono at 15. Many years of Neurontin, Tramadol, Darvocet and a variety of other painkillers have greatly changed my life. LDN was a complete game changer for me. Perhaps I’m just one of the lucky few but I truly had the response that everyone hopes for. I can control my outbreaks if I’m smart. I am aware that if I allow my emotions to be lead by stress I am absolutely going to have an episode 24-48 hours later. I can count on it. The second most important component to decreasing symptoms is regular counseling with a therapist who understands the FM disease process and the brain. Create positive endorphins whenever possible. Positive moments, love in your life and lots of laughing. The hard part is getting the horse in front of the cart. I totally get that it seems impossible in the beginning to flip your mental attitude when it hurts so bad. But it is possible that the pay off is there if you just keep going. It’s definitely a marathon and I felt desperate and doomed while I was making the journey but I am here to tell you it can be done. There may be a better answer down the road for all of us whose brains have run off the tracks but for now at least they are beginning to decipher what is happening and that we all weren’t nuts like they though we were. I am fortunate enough that my boyfriend, who is also a physician, gave me the added luxury of his determination to better pave the way. If you haven’t tried LDN because you’re afraid of withdrawal, understand that I was too. It SUCKED!!! But I’d repeat it now to have my life back.
Congrats Jennie! Great boyfriend. On the scale of 1-10 how would you say your pain (10 = worst) and functioning (10 = best) are now? Thanks for sharing that 🙂
Understanding the fluctuating nature of the disease, I would say I am at a 1 most days which 5 years ago I would never have believed. My worst day over the past year would probably be a 4.
My GP was not willing to prescribe LDN for CFS ( a suggestion from my CFS MD) but referred me to a psychiatrist with more Naltrxone experience willing to try about 4 months ago. We ramped up very slowly, now on 3.5. I take at night, initially some sleep issues but none now. I feel LDN, in combination with other protocols including nano-glutathione, has helped make crashes fewer, “almost normal ” days increase, and recovery from crashes faster. So far so good, I’ll take it!
I am a patient diagnosed with both ME and FM. My ME is worse than my FM, but the latter still is quite significant. I may be a somewhat less common FM patient though as my neuropathic pain was for most of my time significant worse than my muscle pain. I however still had times where my muscles felt as if they were sliced into hundreds of layers: so muscle pain was not but a weak side effect.
What was most effective for me is one of the four “R’s” doctor Liptan mentions to do before going on LDN:
“Repair – Improving muscle function and reducing trigger points via massage, trigger point injections and gentle stretching”
I started with multiple times very gentle exercises to reduce the tension in my neck and shoulder area. In a few weeks the pain in my body went to less than half and ever remained so (all types of pain). I have to keep doing those exercises and they still only work if they are very gentle. Likely it only works for some people but it’s cheap and without side effects for me. It also made my head and mind clearer.
As it is possible to block important nerves when you chose bad exercises, ALWAYS ask a therapist or doctor to show you what exercises are appropriate. My exercises are simple enough that one single session would have been enough to learn them so price is not a real concern here.
Now my pain is further reduced but that is likely in part to additional things I do for my ME. So my pain started 20 months ago to be reduced by half and improved ever since.
I started LDN prior to “gut repair”, bad idea, uninformed practitioner, resulted in major disruptive gastro-intestinal complications, serious drug interactions, all in all a bad deal, make sure all of your ducks are in a row before the addition of LDN, very bad experience for me…hoping others fare well this treatment.
I don’t know if this will help, but I literally had just started taking LDN when I saw this article. I feel like I had the opiate withdrawal effect, only I am on Klonopin (for sleep). I feel like others should know this, as I had a bad experience. I even started on a very low dose (.1 mg) and tapered up to .7 mg, where I eventually stopped.
If you’re on any opiates, you are going to have to suffer some withdrawal while weaning so that you can start the LDN. If anyone is going to attempt this treatment you have to know going into it that it will not be a peaceful transition. It must be monitored closely by your physician and you have to make sure the withdrawal doesn’t become dangerous. I can only say I’m so glad that I weathered the storm to get to the other side. If I hadn’t I wouldn’t have gotten my life back.
I just heard that I will be on Ch. 5 news on Thursday at 5 EDT talking about my experience with fibromyalgia in a way that will hopefully get medical types and regular people to understand. It’s preceded by a few minutes of two separate interviews by blood test/cure (hopefully) creator M.D. and the MGH immunologist who will administer it way down the road. I haven’t seen anything. I was told it will be available on demand at WCVB.com and I may get a more direct link for it. They are hoping to get it to ABC National News .
I purchase my LDN from Belmar pharmacy in Colorado by mail. 4.5mg for a 90 day supply is $53.00. The price is the same for 3mg. Unlike many other pharmacies, Belmar has been compounding LDN for some time and unlike other pharmacies the proper fillers are used. Here is a link if you are interested: https://www.belmarpharmacy.com
I am most blessed by LDN ~ after many, many years of REM-free sleep, I am having the most wonderful sleep experience! I take 4.5 mg at bedtime and will hit REM every night. When I awaken in the morning, I can remember that I had dreams all night long – and they were pleasant ones to boot. I’ve had fibro since 1992…full body pain, extreme exhaustion, the whole kit and kaboodle. It has been a roller coaster; some good days, some great days, lots of bad days. This past winter, I started getting more and more tired…just wanted to sleep all the time. Finally the LDN was suggested and it has been a game changer. Am I cured? No, but I can get out of bed in the morning and feel somewhat alive…which has been a blessing for me and my family.
I’ve been on ldn for 7 nights. I’ve experienced a hard crash, headaches and nausea. As I also have Addison’s Disease, I wondered if it was interfering with my steroids. So I quit the ldn and increased my steroid dose to avoid an Addison crisis. I’ll talk to my docs about it and perhaps try again. Thought I’d post my experience so far.
I was under the impression that naltrexone/LDN was dirt cheap–is it the compounding that raises the price? Somewhere I read there were a few places where you could get naltrexone online (without a script!) with instructions on low-dosing yourself. With fibro, cfs/me, hashimoto’s, RA, adrenal fatigue and degenerative scoliosis (I used to be 4’11, now 4’8″), I’m willing to try anything even if it kills me. Btw, I did an adrenal stress saliva test from ZRT Labs and was shocked at the results (but at least I had a hard copy to convince my husband and my doctor that something wasn’t right).
LDN was a game changer for me too. I went for years without being able to sleep. Tried other meds but they werent effective. Every day for that 3 year period I was exhausted, had a headache, stress and anxiety as a constant. Brain fog and inability to concentrate. I really thought I was on the road to disability. Meds successfully addressed other symptoms of FM. But no sleep for prolonged period I believe was instrumental in bringing on my FM. My mom was diagnosed with ALS, during the timeperiod when my husband had major surgery to have his bladder out due to cancer and then had chemo. His cancer was extremely rare and aggressive – we went to Vanderbilt and later to MD Anderson. I lost my mom and my husband, and had to try to work during this traumatic prolonged period. I have no doubt the degree of stress and lack of sleep compromised my immune system. My body was in constant overdrive, never able to achieve calm or sleep. LDN calmed my body and helped me greatly to sleep. A wonder drug and a life saver.
A follow up to my post a couple of days ago. My doctor said that ldn doesn’t interfere with Prednisone for Addison’s but the side effects mimic an Addison’s crisis which I went through and scared the crap out of me. I’ve been housebound for 9 days do the effects/crash and after extensive research on ldn, I don’t think I’ll try it again. Unbearable fatigue, weakness, pain, headaches, pots, sob, and I could barely walk. I was hopeful but I seem to have adverse effects with most medication I’ve tried and I’ve tried a lot! I’ve experienced the most help from natural supplements and a change in diet to LCHf.
I had previously been on LDN 3.5mg and it was very effective for my Fibro symptoms. However, after being diagnosed with 3 herniated dics with a radial tear in my lower spine, same for cervical as well as 2 bulging discs I went off of LDN. Under pain mgmnt I had titrated up to 20 mg of oxycodone x4 daily as well as a Fentanyl patch. 2 years later I have just gotten off of all pain meds. I didn’t have horrible withdrawls but, I weaned off much slower than recommended. (One time during the middle of this I did have to take 1/2 of what I had been taken due to the pharmacy not receiving their order of oxy & it was a nightmare.) Last week I started ULDN, prescribed 0.5 ML (not mg) at bedtime for 2 weeks (where I am now), then to titrate to 1ML for 2 weeks, then 1.5ML(= 3.5 mg) thereafter. I personally could notice a difference with my very 1st dose (as I did last time I was on LDN). I’m a week into my initial prescription and can report that I no longer wake up feeling like I’ve been run over by a bus. My mood is also elevated, which helps with my depression as well. (on 120 mg Cybalta for that). Overall, LDN has been THE most effective protocol for me.
My prescription is liquid (I had requested liquid) as it is easier to adjust dosaging. I get my script from Skip’s and a mo supply is only $38 with shipping (i’m in Florida). I think part of my success was weaning super slow off of opioids to avoid withdrawls. But I also knew the benefits of LDN 1st hand which eased the fear of detox. (I’ve been to hell & back too many times in life to let detox put me off.) My personal detox symptoms were depression (crying about anything), sweating and being more intolerant to stupidity & ignorance than usual. No stomach issues at all. I hope this helps someone with reservations on trying LDN. (Note: I did not participate in the poll.)
I have been diagnosed with fybromyalgia and chronic fatigue twice. I used to suffer with candida off and on for years. Yes, Candida is real!! I have to say my candida is now gone ever since I started taking the Lady Soma Candida Cleanse. I have literally spent thousands of dollars on Candida products, I bought this Lady Soma Candida Cleanse 3 weeks ago and this is the one that works the best for me. For me I just have to make sure I eat clean and not abuse alcohol. No product will help if you have an unhealthy lifestyle. I hope this helps someone who needs hope and know you can beat this monster
From what I’ve read the ULDN doses mentioned are too high and that is why the results are not better. I am an Admin at a Facebook group that supports people using ULDN as a way to taper opiates and work towards using LDN level doses to help Fibromyalgia and other conditions. In our experience ULDN doses start in the 0.001 to 0.01mg range and should be taken with each opiate dose. Here is a study that discusses such doses:
More information is available at the FB group:
NOPE Non-Opiate Pain-relief Experiences. ULDN / Naltrexone & other options……
Thanks for passing that on Brian. LDN is clearly not side effect free. It sounds like some people need to start at very, very low doses…
Optimal dosing time varies with the person. Best to experiment with different times and see what works best for you as an individual.
For some LDN is energizing — they may have sleep issues with bedtime dosing but do well with morning dosing.
For some LDN makes them sleepy — they will be too groggy with morning dosing but will do well dosing at bedtime.
Occasionally some will find the blocking period results in an increase of pain or a darkening of mood — they will do better being asleep during that time.
Some sleep well but then are groggy in the morning — they may want to try 9pm or 6pm dosing so as to give the LDN some more time to clear.
The original thinking about dosing at night because of the Endorphin cycle has pretty much been put aside although the advice continues to circulate (see https://www.screencast.com/t/JTuvaSDLd ).
One factor in this debate is that LDN cannot be considered in Isolation. Suppose for a moment we go with the idea that LDN is more effective taken at bedtime. Yet for Patient X there are ongoing sleep issues with this dosing time. One must look at the net result. Good quality sleep is very important for healing. So maybe (?) Patient X is better off with 75% of LDN benefits plus 80% of optimum sleep benefits via morning dosing vs. 90% of LDN benefits plus 40% of sleep benefits if going for bedtime dosing. Make sense?
This could result in the clinical experience of patients “doing better” with morning dosing EVEN IF the Endorphin theory is correct.
Reminder though that many users report sleeping BETTER with bedtime dosing so it *may* be worth a try when starting.
Regarding starting dose: Doctors often seem to be anxious to get their patients to what they think of as the “therapeutic dose” that they have seen in the studies — namely 3 or 4.5mg. However it is more important to find the patient’s “right dose” which may be substantially lower.
There are certainly cases where some people start high and do great, but it seems that it’s easier to start too low and need to build rather than to start too high and have to cut back. Being too high on the dose increases the chance of unpleasant (not dangerous) side effects vs. being on a too low dose where it might just not be as effective as the “right dose.” Some conditions that often seem to be better off starting at a lower dose like 0.5mg are CFS/ME, Lyme, MCS, and Hashi’s.
We usually suggest spending two weeks at a given dose before increasing unless no effects are noticed in which case one might increase faster. Some may need to increase in 0.5mg steps. Odds are you will not have any side effects, but in any case initial reactions often settle down within a couple weeks so it’s best to give the dose that much trial time if possible. If the effects are too intense you might want to keep reducing until you get to a dose you can tolerate. We’ve had some people dosing at 0.1mg and some lower. Sometimes it seems like the system needs time to just get used to the “idea” of LDN.
I should say however that once in a while a person will feel better at a higher dose like 3.0mg so if it came to it I would probably try that before throwing in the towel.
If you are using Avicel as your filler you may want to try ginger, dextrose or sucrose instead. More info in the Side Effects and Dosing File at the LDN group Low dose Naltrexone (LDN) for chronic illness & infections…. https://www.facebook.com/groups/108424385861883/
Hi Cort, Thanks for including my comment about ULDN dosing in the article. However the range needs to be edited. In my comment I said 0.001 to 0.01mg. As *some* seem to do OK at higher doses you may be interested in this:
ULDN vs. LDN (this first link is to an image to help illustrate the points discussed):
The best definition IMO is a clinical rather than a numerical one:
A ULDN dose potentiates opiates
A LDN dose blocks opiates
That dividing line varies with the person, the opiate and their history.
You will see doctors/articles citing various definitions. This reflects the variability cited above.
ULDN dosing often starts at 0.001mg and is mostly used under 0.1mg. (usually towards the lower end). It is useful for those on opiates to reduce tolerance and make tapering easier. The user may work up to the point that they can get off opiates and use regular LDN.
LDN dosing is usually above 0.1mg and most often in the 0.5 to 4.5mg range. But again it’s not a hard line. Sometimes doses up to 25mg are used. Opiates are most likely blocked although some can use them for breakthrough pain with a 12hr gap .
For ULDN info:
NOPE Non-Opiate Pain-relief Experiences. ULDN / Naltrexone & other options…………………https://www.facebook.com/groups/1593950197487522/
For LDN info:
Low dose Naltrexone (LDN) for chronic illness & infections…. https://www.facebook.com/groups/108424385861883/