“In my view low dose naltrexone is well on its way to becoming a standard treatment” Dr. De Meirleir
By blocking opiate receptors LDN increases the level of pain relieving endogenous opioids and endorphins in the central nervous system
From RNase L to the gut to hydrogen sulfide to LDN, Dr. De Meirleir has been on the cutting edge of treatment and research. De Meirleir begins this latest video talk by referring to the exciting but small LDN/Fibromyalgia study at Stanford. (Stanford’s 2009 study found that LDN significantly reduced pain, fatigue, and stress, and helped to improve sleep and reduce gut issues and headaches. Their larger 2013 placebo-controlled, double-blinded, crossover study found LDN improved mood but did not help with sleep or fatigue. Thirty-two percent of participants, however, reported significantly reduced pain as well as less fatigue and/or better sleep.)
Given its non-proprietary nature–LDN is produced in compounding pharmacies, not by Big Pharma–it was great to see researchers at one of the best medical universities in the world looking closely at LDN.
De Meirleir explained that LDN is an opiate receptor blocker and is used in very small doses (0.5-5.5 mg/day) relative to its normal dosing (5 grams, which is 5000 mg). It turns out that the partial blockage of the opioid receptors tricks the brain into producing more of its own opiates, thus reducing pain and improving sleep (but not generally reducing fatigue).
Those opiate receptors don’t just affect pain, however; the opiate receptors in the body and skin also help to control blood flow–a major issue in ME/CFS. Dr. De Meirleir didn’t say exactly what LDN did, but he implied it might be able to help smooth out the blood flow problems, perhaps by reducing the dilation of the large blood vessels and/or increasing the dilation of the small ones.
More on Chronic Fatigue Syndrome, Fibromyalgia, and Low Dose Naltrexone
“I want to make a plug for Low Dose Naltrexone” Dr. Nancy Klimas – Simmaron Roundtable Meeting
At Simmaron’s Roundtable no less than Dr. Klimas, an impeccable researcher and physician who does not follow trends, said “I want to make a plug for low dose naltrexone.”
It turns out that LDN, not Lyrica or opioids or Cymbalta, is the first drug Dr. Klimas uses for pain in FM/ME/CFS. That’s a pretty strong endorsement from a well-respected physician.
LDN increases the levels of immune regulating endorphins….Several studies suggest low endorpphin levels are present in chronic fatigue syndrome
The fact that LDN appears to be able to increase endorphins, a feel-good chemical that surely must be almost bottomed out in ME/CFS and FM, only adds to LDN’s luster. In fact a small 2002 Italian study found greatly reduced beta-endorphin levels in the blood of both chronic fatigue syndrome and fibromyalgia patients, but not in patients with depression. An earlier Italian study found greatly reduced beta-endorphin levels in ME/CFS. The authors noted the immune regulating functions of beta-endorphins and suggested a biomarker may have been found, but no follow-up studies have been done.
One person with ME/CFS, Maija Haavisto described her experience with LDN:
“ My fatigue and muscle weakness are a lot better, I don’t “crash” nearly as easily as I used to, and the crashes are significantly milder (I used to get bedbound from very mild effort, like stirring a soup!) My cognitive problems have improved though not as much as my fatigue. My chronic fever and chronic urticaria, both among my most bothersome symptoms, are 90-95% gone. My asthma is also a lot better. Most importantly, LDN seems to have stabilized my condition. I believe I would be in wheelchair, probably even a nursing home, now if it wasn’t for LDN. While I’m far from a cure, my quality of life is very much improved.”
Not bad for a $15-$40 a month drug….The LDN homepage asserts LDN can be useful in any ‘endorphin deficient’ disorder and includes autoimmune disorders in that category.
The fact that LDN is cheap and appears to have few side effects makes it hard to pass up. All you need is a doctor’s prescription.
More on Low Dose Naltrexone
Two recent case studies suggested LDN may be effective in chronic regional pain syndrome (CRPS), an often devastating disease which eventually becomes impervious to anticonvulsants, analgesics and nerve blocks. If you think a cheap drug you can get at a compounding pharmacy can’t be powerful, check out these case reports.
Following an infection in his big toe, a veteran developed swelling, allodynia, and color and temperature changes in his right leg. The next year saw CRPS beginning in his arms, and blisters and skin ulcers appearing in his legs. A heart operation then triggered CRPS in his chest including spasms. Despite being on anticonvulsants, antidepressants, physical therapy, psychotherapy, and opioid and non-opioid pain drugs, he was unable to walk without pain. Ketamine infusions worked for a while but then began to decline in effectiveness. He also had diabetes and hypertension.
Finally, after four agonizing years he was put on 4.5 mgs of LDN. Two months later he was not well but he required less frequent ketamine infusions, his subjective pain level had dropped from an average of 8-10 to 5-6, his spasms had stopped,and he was able to walk without a cane for the first time since 2006.
LDN helped significantly in two complex cases of chronic regional pain syndrome
A second case report involved a person with Ehler-Danlos Syndrome (EDS) who had developed CRPS. Despite taking levetiracetam, midodrine, baclofen, trazodone, diphenhydramine, lansoprazole, budesonide, levalbuterol, L-Carnitine, coenzyme Q10, vitamin D, vitamin C, magnesium, and vitamin B complex she rated her average pain at 8 on a scale of 10.
Four weeks of ketamine troches and LDN (4.5 mg/day) reduced her pain to 3-5 out of10. (The ketamine troches were discontinued by week 8.) Despite having to undergo several operations (which often causes CRPS to spread) not only did her CRPS not spread but it resolved completely. Eighteen months later she’s still taking LDN with no side effects.
The authors believe LDN is dampening glial activation (neuroinflammation) in the central nervous system. They suggested that ketamine, an NMDA receptor blocker, and LDN, an activated glial suppressor, might work synergistically to reduce centralized neuroinflammation.
LDN was also recently found to reverse allodynia in rats and is able to cross the blood-brain barrier and suppress the activity of the immune cells (glial/microoglial) that promote inflammation in the brain.
Getting Low Dose Naltrexone
The preliminary evidence continues to show that low-dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain. The medication is widely available, inexpensive, safe, and well-tolerated. (Younger et. al.)
The LDN website states that LDN is sold by Mallinckrodt as Depade, and by Barr Laboratories as naltrexone, and that a one month supply ranges from $15 to $40.
They also provide a list of ‘reliable’ LDN compounding pharmacies that can ship your LDN to you. Many compounding pharmacies are not, they assert, reliable. They recommend that LDN not be used in its ‘slow-release’ form and that certain fillers not be used.
According to Dr. De Meirleir the doses in ME/CFS may be as low as 0.5 mgs and up to 5 mgs or more. The 4-6 hours or so the drug remains in your system is sufficient to boost endogenous opioid levels for 18-24 hours.
If you’re on narcotic pain drugs, do not take LDN until the drugs are out of your system. If you have Hashimoto’s disease consult with your doctor and start off low.
The Low Dose Naltrexone Survey
Here are the responses thus far to the survey. 33 people have tried it. Most found that they got their best response using 5 mgs or greater.
- Pain – 30% thought it was very effective at relieving their pain, 39% thought it was somewhat effective and 30% got no response.
- Fatigue – 12% found it very effective at reducing their fatigue, 22% found it somewhat effective and 66% got no response.
- Sleep – 23% found it was very effective at improving their sleep; 35% thought it somewhat effective and 42% found no change.
Naltrexone is available without a prescription from All day Chemists, an India source that is reported to be reliable and safe. (I would pay with money order) considering the distance.
Available in 50mg tablets that one dissolves in 10 ounces of water, for example, and then use the appropriate amount per day, for a low dose. They don’t list it as LDN!
How much does it cost? ~and are there side-effects we should be aware of? I’m one of those super-sensitive people who over-reacts to so many things…
Thanks Rich for the tip on AllDayChemists. I ordered from them , used Paypal, have received the med. promptly (they used Express mail) and am about to follow your instructions on dissolving and dividing the doses.
I’m particularly excited because I not only have ME/CFS but also have metasicized bowel cancer, and because of my advanced ME can’t undergo chemo. So encouraging to have something to try. The LDN website is inspiring.
I followed Rich’s tips and ordered Naltrexone from AllDayChemists. Everything went smoothly and easily. I paid as usual with my credit card, no problems. There were two brands to choose from and I chose at random.
I dissolved 1 50mg pill in 300 mls water, so each 1mg = 6mls. It dissolved quickly and easily.I keep it in the fridge and use a syringe for dosing.
I am now in process of slowly increasing the dose. I got an immediate noticeable improvement in depth of sleep from the first night, taking only one half mg. I’m now up to one and a half mg with excellent results.I plan to continue increasing slowly to at least 4.5mg. At first the NTX tasted quite bitter, but I’ve come to like it..it tastes like tonic water.
Thanks so much Rich.
What do they list the Naltrexone as?
Thank you.
I currently keep pain in pretty good control with 200 mg. of Celebrex 2 x daily, and have been doing it for many years, with no increase in dose.
I have CFS.
The B1 in megadoses I’m taking is helping with the fatigue and brain fog – I estimate a 20% improvement.
Is there any information on using LDN instead of Celebrex?
The symptoms I most want improved are the brain fog and the fatigue – Celebrex helps neither.
I wonder if LDN would reduce brain fog and fatigue? I will be following this information to see if it is worth trying for that.
Thanks for the information.
yes it can help with fatigue
I feel so much clearer taking the LDN my fog is minimal to non existent. This medication although inexpensive is LIKE GOLD to me I am so thankful to be getting back on track and hopefully my life back. Suffering from FM/CFS for about 17 years now and years of try this or this then piling narcotics pills patches shots with minimal relief…. One simple inexpensive pill seems to alleviate 90% of my symptoms and this is day 8 I’m getting stronger and enjoying my days knowing that the pain is manageable now.
That’s so great Gina. Congratulations! How nice that something inexpensive and readily available works :). Continued good luck on LDN.
I found LDN in a Charlotte NC CFS newsletter five years ago. It was just a little blurb, but it resonated with me. My Integrative MD had no problem prescribing because, “it’s low dose, can’t hurt”. I had the usual one or two weeks balancing the sleep issues. What it did for me was lift a heavy full body fatigue. After reading on the http://www.losedosenaltrexone.org web site as to all the various health issues raving about the medication I am convinced I will never stop taking it. Skips Pharmacy is a good one for ordering in the states…..he’s a pro on the LDN subject.
Hi, I’m from Charlotte, NC and have been diagnosed with Lupus & Fibromyalgia. Having read a great deal about the effectiveness of LDN in treating these disorders, I’m very anxious to try it, and am searching for a local MD who will prescribe It for me. You mentioned in your post that you read about LDN in a Charlotte CFS newsletter, so I’m hoping your Integrative Medicine Practitioner is also from Charlotte. If so, I would really appreciate having his/her contact info. My rheumatologist is very traditional, and scoffed at my request for an LDN prescription.
Thanks!
If you go to the LDN website they may have a list of practitioners, but have you seen Dr. Lapp? I think he’s in Charlotte or close by and he’s been treating FM for decades…He’s at the Hunter Hopkins Center…
I wanted to try LDN, and I haven’t given up, however even with all of the lterature that I had printed (thanks to three ladies that had given me), all three of my Doctors (Rheumatologist, Neurologist and PCP) had never heard of it and were not really interested in reading or discussing it.
I’m not giving up, I’m also looking into other things but gotta keep on going.
Good luck Debbie…
Debbie , try asking a pain specialist for ldn!
I do not understand why this drug works in ME / CFS. Naltrexone is a substance that blocks the reward center in the brains . For this reason it is used on alcohol addiction. Scientific research shows that the reward system in the brain by ME / CFS is not working properly. This is contradictory. http://www.sciencedaily.com/releases/2012/04/120424142109.htm
Thanks for the link. I’d forgotten about that study…My understanding jives with what Iquitos said. LDN tricks the brain into producing more endogenous opioids. That’s good to hear that it can work at any time of the day.
Hi Cort, Naltrexone simply blocks the normal reaction of the part of the brain that produces the feeling of pleasure when opioids are taken. It does not make sense with the study i mentioned.
I realize that. I was simply glad to be reminded of that study.
It is far too simplistic to say that NTX only blocks pleasure chemicals. Not only endorphins are blocked temporarily, but enkephalins too. And the benefit arises not from what the NTX does, but how the body responds to the deprivation. When the system responds to the blockade by increasing production, an increase in various regulatory immune functions is triggered. Some of these include anti-inflammatory and anti-proliferative actions. This is far from the whole story.
Cort,
This is consistent with what I have been saying for years about the role of endorphins in the causation of the hyperalgesia in ME/CFS for years. I have been on opioids for years and have experienced no side effects whatsoever and it has completely normalized every single neurological symptom I have experienced: from the obvious hyperalgesic pain to a complete normalization of my cognitive symptoms (by blocking the post-encephalitic seizure that causes the alpha/delta wave sleep anomaly, the ADD like cognitive dysfunction that we experience, as well as the dysfunctional startle reflex) in addition to the minor (?!) neurological symptoms such as the night sweats, muscle spasms (it’s no coincidence that the spasms occuring in meningitis have been traced to damage/dysfunction in the dorsal horn and root ganglion), loose stools, etc. I’m convinced that a minority of ME/CFS patients such as myself are in a state of primary endorphin deficiency relating to the ischemic damage to the dorsal horn. Especially if when one considers that no other NMDA antagonists have ever worked for me (including opioids with additional NMDA antagonist properties such as methadone.) I have to wonder if there are differences in the ischemic damage to the dorsal horn and root ganglion in some patients that specifically affects the endorphins more than some of the other inhibitory neuropeptides with the dorsal horn. I’m tempted to try LDN but I’m concerned that the damage may be such that LDN may not be able to provoke additional endorphin release in the same way that it might in others (especially since I don’t seem to respond to other NMDA antagonists. Not to mention that I would have to go completely off my pain meds; which they are just starting me on forced reduction. OUCH!) But I’m worried about my forced reduction and would like to find something to replace my pain meds. Frustrating since I just finally got my meds to the point where they were working and have been doing the best that I have in 26 years; were it not for the cardiomyopathy and some of the remaining micro circulatory symptoms (which are still disabling), I would be in terrific shape. I’m convinced that in my case, ME/CFS is a post-encephalitic, cardiomyopathically mediated, ischemic encephalopathy. I started downhill originally after an encephalitic like illness that worsened after the heart “events” started in the third month after the initial 2 month long illness (which was greatly worsened 9 months later when I picked up mono.) For some of us, pain meds may literally be a form of “endorphin replacement therapy.” Thoughts? Keir.
Very interesting! Have you tried cannabis/CBD Oil? We have a blog coming out on it. Good pain reducer plus may be increasing endorphins I believe.
Check these blogs out – https://www.healthrising.org/blog/2016/11/07/fibromyalgia-endorphins-exercise/
https://www.healthrising.org/blog/2015/10/21/are-all-the-feel-good-pathways-blocked-in-fibromyalgia-and-chronic-fatigue-syndrome/
it blocks the receptors only for a short time.4-6 hours
Yes, it does but for some reason endorphin levels remain raised for another 18 hour or so…
Gijs, the theory is that when the “reward center” is blocked by LDN, the body produces more of the natural opiates that help the immune system and other systems in the body, to compensate for the blockage, which is temporary at any rate.
I take LDN in the afternoon and a pain reliever with codeine right before bed with good results. One of the docs who found that LDN supports the immune system later said he was sorry he ever advised patients to take it at night. Any time of day will work, upon experimentation to see what’s best for you.
LDN hasn’t cured me either but it has added a great deal to my quality of life. I get it from India, without a prescription.
I have never heard of this drug before, but find it quite interesting. I wonder if it has ever been used exclusively for CFS patients. By that I mean those who don’t have pain, but are still very sick. I feel lucky not to have pain (aside from frequent headaches), but I’m still pretty much housebound. One of the most uncomfortable payback symptom I get is anxiety (for lack of a better word.) It doesn’t seem to be fear or unresolved issues, but the way my nervous system reacts to pushing too hard, even if it is doing something I love. Sort of Post Exertional emotional Malaise if you will. I’ve come to think of it as nervous system pain, but not experienced as physical pain. I haven’t been following new developments as I should, so any thoughts on this would be welcome.
Obviously LDN isn’t a cure, but if it would work as well or better than the other “bandaid” medications and supplements I’m using that would be lovely. Thanks for making me aware of this.
“Post Exertional emotional Malaise” – boy are we in the same boat (except that upset increases my pain… I’ve never used LDN but hope to try it at some point as well. Since its used in quite a few disorders I imagine it could be helpful for some people with fatigue but not pain.
Darlene thank you for the term Post exertional emotional malaise – it exactly describes what I have never found words for but experience all the time.
I, too, can relate to the “PEEM” you describe. Sadly, it doesn’t matter whatsoever whether the emotion is pos. or neg. — was just approved for SSDI after waiting 18 mo. and was down for 3 days because I’d gotten so excited. That’ll teach me! 😉
Congrats on the SSDI—I’ve heard they’re getting faster!! For me, it was a full three years, minus one month….boy did a lot of things go wrong (financially) during the wait!
I would not be without my ldn! It helps pain and inflammation and IBS and everything! I do 1-2mgs per evening.
Here are the responses thus far to the survey. 33 people have tried it. Most found that they got their best response using 5 mgs or greater.
Here are the comments thus far:
I started with1.5 mg for a couple of months, then cut back to .5 mg for another month, but did not feel better and developed vertigo-like symptoms that only went away when I stopped the medication.
LDN was not successful, neither for me nor for my severely ill daughter!
LDN made me feel generally worse, and gave me new symptoms, such as sore stomach, and it was starting to make me depressed.
Helped somewhat with pain and sleep – but caused horrible depression. Went away when got off it. Did not help POTS. Still needed more pain relief – not effective enough. Had stopped Tramadol and found out you can take the Tramadol in the am and must take LDN at night.
Wonder if the combo you spoke of would eliminate the negative that I found. Couldn’t stay on it – it wasn’t good. Bad outweighed the good.
I have been on LDN for 7 months. It took me 4 months to work up to 4.5mg. I haven’t noticed any change in any of my symptoms, apart from minor gland soreness for a couple of days each time I increased the dose from 2mg onwards. I will continue to take LDN purely on faith.
I am currently a patient of Dr. Teitelbaum. I took LDN at 4.5mgs but got horrible headaches so I had to stop after a few days. I even cut the dose in half but still got the headaches. I hear the headaches are not common. I am trying to make a connection… when my accunpuncturist would place a lot of needles in my back, I would get the same exact headaches. Hope this hopes!
Been on LDN for 3+ yrs. Has greatly reduced pain. Without would likely be in wheelchair
I quit taking it because I never adjusted to the sleep disturbance. It never got better. Maybe a lower dose would have been possible, but I didn’t know and my doc was shooting in the dark!
Also helped relieve lower back pain
Skip’s Pharmacy in Boca Raton gives the best service ever
I have been dramatically helped by taking LDN, and plan on taking it for the rest of my life.
Please research everything before you do it because there’s a lot of dosing misinformation in the article and in the replies. Put all capital letter in facebook search GOT ENDORPHINS LDN And come join a great safe friendly group lots of people with lots of different illnesses using LDN. God bless
I have found that LDN helped me with some of my pain symptoms. At least in the moring I wake up and don’t feel like my legs will break. Also I get my ldn from Publix some of there pharmacies compound medicines and I don’t have to pay anything its covered by my insurance. You have to try its worth trying. http://www.sep.over-blog.com
its the only thing i’ve tried that has seemed to work
Didn’t do anything for me except significantly worsen my quality of sleep, which became very light. Worth a try, but overhyped for CFS. Show us the studies 😉
I found LDN on a Charlotte CFS newsletter five years ago. My Integrative MD was immediately OK with prescribing…”it’s low dose, can’t hurt”.
My Rheumatologist, Neurologist and PCP had never heard of it and were not interested in any of the information I brought in to try to discuss it with them
Had no poitive effect at all and DESTROYED my sleep!
It made me very depressed so I had to stop
I’ve used LDN since 2008. It’s definitely no miracle cure but it relieves my pain. If I miss a dose one evening, the next day I feel more crappy than usual. I take it at the exactly same time every evening, adjusting for summer- and winter time.
Many patients react negatively to LDN initially. I didn’t, my pain was somewhat reduced from the first day. My advice is to start at low doses and increase only when the initial dose feel too low. I started with 1,5 mg, and increased to 3 mg after 3-4 months, 4,5 mg after 6-7 months, and settled on 6 mg after one year. I’ve been on 6 mg ever since. Many people give it up too fast I think – give it time!
On LDN we have to avoid opioids, but that’s no biggie. I use NSAIDs instead of opioid analgesic, and my pain is better controlled with «increasing wellness» on LDN than masking symptoms on opioids.
Thanks for the info and feedback.
I started taking LDN for Fibromyalgia in January of 2009. It has totally changed my life. I have gone from daily pain of 6-8 or more to 0-3. I have also gone from being practically bedridden and needing a walker to just get around my home to living a nearly normal life and even doing some traveling again. I recommend that everyone just give it a try. What do you have to lose?
Congratulations Judy and thanks for letting us know…
Three brief points. First, never underestimate the power of the placebo effect in evaluating drug efficacy. The patient’s belief and expectation that the drug will alleviate symptoms is often far more powerful than the action of the drug itself.
Second, symptom alleviation for both refractory fibromyalgia and irritable bowel syndrome can often — but not always — readily be achieved by most sufferers through the time-limited use of hypnosis with a therapist who is trained and knowledgeable in this area. The rates of improvement in key areas (such as pain reduction, fatigue removal, and improved sleep) is far better than for virtually all medications. There are no side-effects and the cost of treatment is relatively low. The problem is not the efficacy of the treatment, it’s finding a qualified treatment provider.
Finally, my overall point (aside from providing basic information) is simply that taking the new “pill of the day” is not really the answer. You don’t need or want yet another new pill: you want to end your suffering and get your life back, and medications rarely provide that as I’m sure we all are aware.
The theory that LDN works by endorphin stimulation may be, if not wrong, at least incomplete.
Naltrexone interacts with the immune system via the TLR4 receptor in an anti-inflammatory fashion, and this has anti-nocioceptive effects.
Natrexone is a TLR4 antagonist (like some antidepressants) while opioids are TLR4 agonists.
Opioids produce analgesia via endorphin receptors, but produce tolerance, and often eventual hyperalgesia, via TLR4 agonism – the opposite effect to naltrexone. This means that naltrexone – perhaps at whatever dose it takes, not necessarily LDN – can potentially block the deep seated neural pain of chronic inflammation.
I wrote about this here: http://hopefulgeranium.blogspot.co.nz/2013/03/our-first-song-for-today-is.html
Thanks for the insights, George.
Brilliant blog, George!
We have been dosing 1.5 mg LDN for Parkinson’s and also for some costochondritis (an auto-immune syndrome involving the rib cartilage). We’ve been at this very low dose for about a month now, and it is surprising to us that it would have any effect at all, as we had just intended it to be an initial dose on our way to a more effective higher dose. But it has.
At this level we have found that the costochondritis has disappeared and sleep is generally improved. Also, we have reduced Levodopa/Carbidopa from 8.0 mg per day to 6.5 mg per day, after occasional dyskinesias and frequent nausea arose at peak moments of the dosing cycle.
We speculate that the calming effects of the LDN upon microglia have reduced neuro-inflammation and allowed some impaired dopamine-producing neurons to partially recover, resulting in an increase in endogenous dopamine production. At this very low LDN dose, perhaps these calming effects are sporadic and thus sometimes we still have some nausea at peak periods and sometimes dopamine falls a little short. There is sometimes a feeling of fatigue in excess of when we started the LDN, and again, this is speculation, but it seems possible that microglia are being calmed but then wake up again and are extra active when they do, which could use of energy through auto-immune activity, just as occurs with CFS and other auto-immune disorders.
We plan to increase the dose soon, and hope that this will increase the positive effects already noticed, and also reduce the sporadic aspect of those effects.
I would also note that dosing guidelines for LDN seem to be based mainly on the effect of dosing on levels of endorphins, perhaps because these levels are very easily measured. However, LDN has another mechanism of action, which is through microglial calming, and that probably has nothing to do with endorphin levels, as it works by blocking TLR4 receptors which otherwise would be attached to by substances such as Lipo-Poly-Saccharides that cause activation when they attach. So I’m not certain what level of dosing is optimal for the microglial calming effects as opposed to the endorphin-mediated effects. If anyone has information regarding this it would be of interest.
Thanks for the info on microglial calming…
Good Afternoon Lou,
I found this old thread regarding your use of LDN for Parkinson’s. I’m not sure you will get this, however, here goes. Are you still taking the LDN?
If yes, what dosage? If no, why not? I hope you receive this and are doing well. I also have PD.
Thank you.
Chris
Very interesting Lou – thanks!
Recently learned that gluten (gliadin, specifically) is believed to *stimulate* the same TLR4 receptors on microglia that LDN attaches to to *suppress* activation. So, we went on a strict gluten-free diet starting two weeks ago and have felt generally better so far as Parkinson’s symptoms are concerned. Although gluten has been known for some time to increase inflammation, its connection to this receptor is based on fairly new research:
“Gliadin is an uncatalogued Toll-like receptor ligand”
Digestive Disease Research Center, Tehran University of Medical Sciences, Tehran, Iran
http://www.sciencedirect.com/science/article/pii/S2251729413000256
Another piece of interesting information is that green tea attaches to the this same TLR4 receptor but tends to block it, like LDN, only perhaps less powerfully:
http://www.sciencedirect.com/science/article/pii/S0006291X12016622
“a major active polyphenol of green tea, has been shown to down-regulate inflammatory responses in dendritic cells (DCs)…In addition, EGCG-treated DCs inhibited lipopolysaccharide (LPS)-induced production of pro-inflammatory cytokines”
Also apropos: “Autoimmunity, dendritic cells and relevance for Parkinson’s disease”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3535404/
We have been drinking lots of green tea every day for years and it is one of the things that has been most helpful in ameliorating the symptoms of Parkinson’s. Now we have a better idea as to why that may be the case.
So, our new mantra is, “gluten free, and drink more green tea.”
We’re hoping that the effects from the LDN will be even more dramatic. We suspended treatment a few weeks ago despite significant initial benefits, without ever getting past the 1.5mg dose level, due to nausea, which we suspected was due to a reaction to the Avicel filler we had selected. We have a new prescription now with a standard lactose filler and have just started again at 1.5mg yesterday, and so will post again in another month or so once we get to higher dose levels and hopefully see some additional improvements.
I don’t know if anyone will see this but will give it a shot. I’m about to try this and have heard that one must get off of tramadol which I’ve been taking of years and was dreading, but just saw a post that Dr. Teitelbaum says that if you take less than 300 mg a day you can stay on it. Could anyone confirm that? Also, my doc gave me a script for 30 pills of 4.5 which would cost 43 bucks and I’m wondering about going the Canada route and mixing it in water to draw up, but I don’t see how one can be assured the particles are evenly distributed throughout and with it needing to be accurate down to .5mg. Does anyone here do it that way? Thanks for any help.
Betsy,
tramadol is the only opiod I know that doesn’t have TLR4 activity, this means it should (in theory) interfere less with what LDN is doing with regard to inflammation and the causes of pain. As for whether you will get withdrawals from tramadol, there is such a thing, at least psychologically, but if you start off with a very low dose this might be OK, see for example
http://www.ncbi.nlm.nih.gov/pubmed/12703669
I have been using LDN (Low Dose Naltrexone) for 3 years now. I had great success with it relieving achy muscles throughout my body.
I was in Mexico at the time and only had access to 50 mg pills so had to mix with water and then use a dropper to suck up the 4.5 mg.
I used 50 mg. in 50 ml of water and then 4.5 ml in the dropper.
Very few side effects. Had vivid dreams but nothing else of significance.
On day 4 I woke up feeling no aches at all. At the end of one month I started to have random jerking of my legs at night and discontinued use.
BUT – the aching muscles did not come back for 6 months. At 6 months I again took it for one month and then went off it again. Again, no aching muscles from day 4 onward. Stopped at 1 month and didn’t need it for 6 months again.
For me it’s been a true lifesaver.
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It has amazing effect for the treatment of drug addiction.
It has awesome effect for treating drug addiction.
We live in New Zealand. My daughter who has CFS and Fibromyelgia started on LDN 5 months ago. She commenced on 1.5mg and within days had a better sleep. After 2 weeks she went up to 3mgs and then after another 2 weeks up to 4.5mgs. Since commencing LDN during flares I have not had to shower her, wash her hair, dress her or feed her due to the loss of muscle use in her arms. She has not had to use her wheelchair if her legs stopped working. She has better sleep, less pain, less tiredness, less brain fog and an overall better quality of life. She is back where she was 2 years ago before the CFS diagnosis. She still has CFS and Fibromyelgia but at 27 providing she rests she has a more positive outlook on life. I has been difficult to get her doctor to believe in LDN but as long as it gets prescribed we will keep working on that.
Congratulations and thanks for sharing that Debra. Continued good luck with your daughter!