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Barbara was 57 and had severe burning pain in her legs and feet.
Her pain began after chemotherapy treatment for ovarian cancer which took place 4 years ago.
Thank God the cancer was caught early, and since treatment she has no evidence of cancer. But she does have burning in her feet. Her joints hurt. She also has fatigue and aching in her muscles that was diagnosed as fibromyalgia. She is not able to sleep. She feels exhausted all the time. Getting less and less functional as the months go by. She’s scared and anxious about what’s going to happen.
She saw a doctor who did an EMG, which is a nerve test, and he told her she had neuropathy. They tried various medications like Lyrica and amitryptilline. But they gave her side effects like dizziness and fuzzy-headedness and inability to think and remember.
She continues to take the Lyrica because nothing else helps the severe pain. But she’s fuzzy all day, even when she only takes it at night. And she can’t take it during the day so there is more pain by day.
What Should We Learn From This?
We’re going to jump off from here and learn a few main points:
- What is neuropathy and how is it related to chemotherapy?
- Why does conventional medicine have such a hard time helping it?
- What did we do with Barbara that helped her?
- What is the role of functional medicine in helping neuropathy?
What is neuropathy?
Neuropathy is when the nerves get sick. Nerves are not like electrical wires. They are living cells that have a cell body that is usually in or near the spinal cord. Nerve cells have projections called axons that are living dynamic tubes that nerves use to communicate with other nerves. For instance, the nerves that provide sensation and activate muscles in our lower legs and feet have their cell bodies in or near the spine So they are quite long. Other nerves are shorter, like the ones that provide sensation to the skin near the spine.
In order to function, nerves are constantly building and repairing themselves. They cell body has these awesome manufacturing plants that make proteins, enzymes, ion channels, and produce energy. All of these things are necessary for nerve function. In neuropathy, the nerve gets sick, so it doesn’t do all the things it needs to and the nerve stops functioning. That’s why a person with neuropathy can have numbness, pain, loss of coordination, muscle weakness, muscle spasms, and so on.
What Causes Neuropathy?
Many things can cause neuropathy. Diabetes may be the most common cause. There are the toxic effects of chemotherapy, like in this case of Barbara. Neuropathy can be caused by metabolic diseases like thyroid abnormalities, and autoimmune disorders. Other causes include nutritional deficiencies like B12 or folate, heavy metal toxicity, and other environmental toxicities.
Studies have shown that something like 65% of people getting chemotherapy get peripheral neuropathy. For some of them, it resolves over time after chemo ends. But something like 30% of people still have neuropathy 6 months later. It’s a severe problem that causes much suffering and disability.
What Can We Do About Neuropathy?
Conventional medicine—doesn’t do much.
A good neurologist will look for underlying diseases or nutritional deficiencies. But still, many people never have an identified cause.
Drugs can sometimes control the pain. But they’re like a band-aid. they don’t address the underlying cause, so the neuropathy can get worse. And the medications often cause side effects.
What About Supplements and Nutrients For Neuropathy?
Well, it’s a no-brainer that if someone is deficient in B12 or folate, then supplementing those can be very helpful. Remember that when we talk about lab values, ‘normal’ doesn’t always mean normal. Many people have a B12 in the low normal range, but they still have neuropathy or other neurological dysfunction. That’s because different people have different needs for nutrients. If I have a patient with a neurological disorder or neuropathy, I like their B12 to be in the middle range. There’s also a special test called a methyl-malonic acid that looks at how the B12 functions. Its often helpful to see if a low normal B12 is actually normal for a given person.
Nutraceutical research in general has a problem, and that problem is true for neuropathy as well. The problem is that most research is done on single nutrients. Kind of like the nutrient is a medication. It’s a “Take this pill for this problem approach”. But that’s often not so realistic. In your body, there are multiple interacting biochemical pathways, and nutrients dance together as a group. In the world of functional medicine, we tend to supplement things together in the way they normally function in the body. So when we study a single nutrient, we are often missing the potential mechanisms, in which several nutrients are interacting with one another.
So, for instance, someone who has an MTHFR gene mutation that impairs their metabolism of folate, may have significant reduction in their body’s ability to eliminate toxic compounds, and they may also have impairments in their functioning of vitamin B12, B6, and other nutrients. That can lead to oxidative stress and inflammation, which can cause all kinds of problems, including neuropathy. So, someone with that mutation and neuropathy would get a number of nutrients that are aimed at a. enhancing the overall cycle of folate metabolism, and b. reducing oxidative stress, and c. stimulating the detoxification processes in the liver.
That’s a complex multifactorial process. It’s really hard to do good research on a complex multi-factorial process. It takes large groups of patients and costs a ton of money. And no-one stands to gain approval for a new blockbuster patented drug. So no-one wants to invest 50-100 million dollars in that research.
But that doesn’t mean research is bad.
For sure, if there is a randomized controlled trial that shows that a given nutrient is helpful, then of course, lets try it. But if there are not randomized controlled trials that give evidence of efficacy, don’t take that as evidence of inefficacy. That’s just dumb, but it’s the way many doctors seem to think. If we know the physiology of nerve dysfunction and know that certain biochemical processes are impaired in nerve dysfunction, then I’m very willing to give nutrients that support that biological function. Because we are not talking about doing surgery or something destructive. The risk-benefit analysis is still often in favor of supplementing, even when there is no evidence from trials. OK, so that’s a sensitive topic and we will talk about it more another time.
Regarding neuropathy though, we do have studies showing that alpha-lipoic acid, which is a nutrient and antioxidant that helps cellular energy production, helps with diabetic neuropathy. It may be useful in other kinds of neuropathy. So a reasonable number of mainstream docs will recommend it for neuropathy, especially in diabetes.
But overall, the therapeutic options offered by mainstream medicine are not so effective for many many people with neuropathy. So they continue to suffer, like the patient I discussed in the beginning.
But,
If we are willing to think out of the box, then there are things to do that can be helpful. Let’s talk about that. Let’s start by talking about the cutting edge understanding of neuropathy. This is what is in the primary scientific literature, and it can take decades to get into mainstream medical practice.
What Are Some of The Root Causes of Neuropathy?
Inflammation
Modern science is showing us that many cases of neuropathy have their root in a vicious cycle of Inflammation, Oxidative Stress, and Mitochondrial dysfunction. What does that mean?
Inflammation means the immune system is over-active. We’re not talking about red hot warm tender knee joint, or the inflammation of sinusitis. we’re talking about low-grade activation of the immune system which is being shown to be the root of most chronic illnesses. Modern medical science is showing this, but mainstream medicine doesn’t yet know what to do with it.
Oxidative Stress
One of the results and causes of inflammation is oxidative stress. Oxidative stress is kind of like the biochemical stress of living. And it gets higher when there is toxicity or inflammation. Oxidative stress is the biochemical metabolic load on the body’s ability to regulate itself.
And those two issues—inflammation and oxidative stress—are intimately connected with dysfunction of mitochondria.
Mitochondrial Dysfunction
Mitochondria are organs inside our cells that produce energy. When the mitochondria don’t function, the cells have an energy crisis. In the nerves, that means the nerves start to break down. And then the symptoms of neuropathy often happen.
This dance of vicious cycles of inflammation, oxidative stress, and mitochondrial dysfunction is implicated in many of our most difficult chronic illnesses. Fibromyalgia is a great example. You may remember that this patient also had a diagnosis of fibromyalgia.
Two ‘diseases’ one set of physiologic imbalances.
Please Understand This Crucial Point About Chronic Illness
This is a really important point. It’s relevant for most people with any chronic illness. Two diseases, and one set of physiologic imbalances. That’s not the way that doctors get trained to think. We get trained to think about one cause, one disease, and one treatment. That was the gift of the antibiotic era. Before penicillin was invented, a person would come to the doctor with pneumonia, and most likely they would die. After we isolated streptococcus and found that penicillin kills it, most people with pneumonia would be better in a few days. It was miraculous and changed the way doctors think about medicine. And the idea of one cause, one disease, and one treatment became a dominant way of thinking about illness. That helps in some situations. But not in chronic illness.
Common Underlying Causes with Variable Expression
Like I said, The physiologic imbalances that give rise to neuropathy, often also give rise to fibromyalgia. And they can give rise to autoimmunity or arthritis, or irritable bowel, or chronic tendinitis or bursitis and so on.
So often, people come to me with ‘everything is falling apart syndrome’. And that’s what it feels like because they have all these problems. And conventional medicine, which sees each disease as an isolated entity with one cause and one treatment, usually doesn’t look for root cause of everything. It gives each problem a name, and gives each problem a medication or two, and then the person has a long problem list with 8-10 medications, but nobody is addressing the underlying physiologic imbalances. So the person is getting sicker, and collecting more diagnoses and medications and more medication side effects.
Functional Medicine–Find The Root Cause of Illness
Functional medicine is different. We look for root cause. I looked at Barbara and saw neuropathy, fibromyalgia, sleep disturbance, and anxiety, and they’re all connected in a vicious cycle. And low grade sterile inflammation with oxidative stress and mitochondrial dysfunction are part of the cycle.
How Did We Help This Patient?
There is a powerful lifestyle approach to these kinds of problems that comes out of functional medicine. But she was getting ready to go on a long trip, and there wasn’t time or space to do all that.
So, we started with LDN (low dose naltrexone).
What’s is LDN, and why did I prescribe it for her?
LDN is a medication that is very unusual. It doesn’t work the way most drugs work.
It evokes the natural intelligence in the body.
Naltrexone blocks the opioid system of the body. In high dose, it can help a heroin addict stay clean, because they can’t get high.
In very low doses, (hence the name low dose naltrexone, or LDN), it tricks the body to produce
more of its own natural pain blocking chemicals called endorphins and enkephalins.
Some of these natural molecules modulate the immune system. LDN has been shown to reduce the level of inflammatory signaling molecules called cytokines.
That’s why research suggests that LDN is helpful in many chronic pain states, fibromyalgia, chronic fatigue, and other chronic illnesses.
So she started LDN. We do it at low low dose initially. She called me when she had been on the therapeutic dose for about 2 weeks. The burning pain was gone. She still had aching in her joints but it was tolerable.
So what does that mean? Did LDN work only partially?
This is very important
So pay close attention.
She hadn’t been on it long enough to know.
LDN, as I said, stimulates the body’s own pain blocking chemicals, and it reduces low grade inflammation that can cause oxidative stress and mitochondrial dysfunction.
This is not comparable to a drug that so to speak ‘takes time to build up in the blood’. LDN does not “build up” in the body. It does its job for a few hours and is inactivated. But THE BODY ITSELF does the work. LDN stimulates a healing process by which the body works on itself to block pain and reduce inflammation. So it takes time.
In other words, just like the disease process that causes fatigue, fibromyalgia, and neuropathy takes place gradually, so does the healing process with LDN or other means that help the body heal.
She she’s going to continue to take the LDN and lets see how it impacts her other symptoms and overall health.
Healing Chronic Illness Is a Complex Process
And just a note about the bigger picture.
To my eyes, LDN is part of a broader set of tools to heal chronic illness and chronic pain. As we discussed above there is a vicious cycle of of inflammation, oxidative stress, and impaired cellular energy production that drives problems like neuropathy, fibromyalgia, and chronic fatigue. That same process drives other chronic illnesses like Alzheimers, Parkinsons, diabetes, heart disease, and autoimmune diseases like arthritis, colitis, lupus, multiple sclerosis, and so on.
We have proven ways to address the underlying imbalances in physiology through diet, specific nutrients, enhancing digestion and detoxification, mindbody therapies, and so-on. The first step is to identify what issues are most relevant for a given patient. then we try to make the lifestyle changes that gradually bring the system back to health. That process is called functional medicine. It takes work and a willingness to make lifestyle changes, but the potential benefits are tremendous.
that’s it for today. Thanks for watching.
Please like and share this post or this video with your friends or anyone who you think might benefit.
And you can get on the free newsletter to receive news and updates about healing chronic illness and chronic pain through level headed integration of conventional medicine and healing natural therapies. Go to www.drshiller.com and click on the box in the upper right section of the page.
Thanks again
I’m Andrew David Shiller
41 thoughts on “Healing Neuropathy with LDN and Functional Medicine”
It’s interesting that you can treat LDN with neuropathy. It makes sense that treating sick nerves would help! Nerves are responsible for most bodily functions, after all.
Will LDN help with Adhesive Arachnoiditis ?
If so. At what does would I start ?
What would you anticipate to be the ultimate does required?
lDN slow release or ??
Regards,
Kat.
Hi Kat
Arachnoiditis is a tough problem. It’s probably worth a trial of LDN, especially if you’ve tried other things and they haven’t been helpful. It should always be immediate release. Most people start at 1.5 mg and increase to 4.5, but its very patient dependent and I can’t make a specific recommendation, sorry. I would also consider finding a very skilled practitioner of cranial osteopathy or cranio sacral therapy. May you have speedy healing soon.
Many thanks. I will discuss your helpful suggestions and further action with my very supportive GP.
Regards, Kat
Your article is very interesting. I was diagnosed with autoimmune neuropathy just because other options were ruled out. I wanted to ask you about side effects of taking LDN. I mentioned it to my neurologist but he did not prescribe it to me.
Also wanted to ask you what would be right dose for a female 5.45 Ft 195 pound.
Thanks in advance for your help.
Hi Gerald
Side effects of LDN, based on clinical experience, tend to be very mild if they happen at all. We usually recommend it be taken before bed. For some people it causes them to feel more energized or have vivid dreams which disturb sleep. In that case, they can take it during the day. Some patients can have more pain initially, or headaches, or mild gastrointestinal distress. Often lowering the dose makes that get better. The right dose is usually found by starting low at 1.5mg and slowly increasing once a week or so. In my experience, it is helpful to see everyone as an individual and find what works for them. I hope that helps.
That is interesting that conventional medicine and other drugs can help to control the pain. If I had neuropathy nerve pain and we didn’t exactly know how to treat it, then I would love to try medication. Pain that I cannot escape from is really hard on me, so if I can somewhat control it that would be great.
Hi Dave
It sounds like you don’t have neuropathy pain. I’m glad to hear that and I hope you never do. Thanks for commenting. All the best.
Test Comment
I have severe peripheral neuropathy of lower extremities and now in my hands. Tried lyrics and gababenptin at a high dose and am now on LDN plus 1200 gabapentin plus 1800 alphalipoic acid plus topical high CBC w low THC plus curamin. Also take methylcobalamine, methylfolate 15 and NAC. This is all very expensive and only partially controls the symptoms. My primary care dr wot. says I may have fibromyalgia. This has all come on in the last couple of years except the neuropathy which started a few years ago. I also have SIBO but few symptoms now that I have made dietary changes. I am frustrated. I need a local functional medicine dr in spokane that takes Medicare. What do you suggest I intuit that there is an underlying problem that remains unaddressed.
I have recently been diagnosed with alcoholism and started on naltrexone 50 mg daily. I was experiencing burning hand and foot pain for the last year prior to quitting. Within 3 weeks of starting naltrexone, the burning pain resolved. I now have random burning stabbing pain in the same distribution that lasts for seconds and may be accompanied by brief muscle twitching. I wonder if this is nerve healing?
Hi Kimberly
Thanks for your comments.
I’m glad the burning pain resolved! There are different aspects to the sensations and pain of neuropathy. It may be that certain aspects of the pain have improved with naltrexone. You might consider combining it with other approaches. Things that might be useful, depending on your situation, include CBD, PEA, and/or alpha-lipoic acid. It might be helpful at some point to use medication that works in synergy with the naltrexone. Meds that might be helpful include gabapentin, and tegretol. A neurologist or pain doctor can usually prescribe those. Make sure you let them know about the alcoholism. I hope you’re better soon!
Thanks, it is very informative
I enjoy the report
I spent a great deal of time to find something similar to this
I have Crohn’s and take Entyvio every 8 weeks. I recently started having a mild burning in my heels and then my little toe became numb. Now both feet burn and tingle. I have a prescription for LDN, but wondered if it is just taken at night. I’ve also been worried about how pain meds would work if I had to go to the hospital or dentist. Can you comment?
I have had chemo induced neuropathy for two years now. I just started a 3mg daily dose of LDN . Just wondering how long before people see a benefit.
It’s very individualized.
Depends on the kind of chemo and mechanism of damage and how bad is the damage.
And it’s important to distinguish between the painful symptoms of neuropathy and the loss of sensation.
LDN can potentially work on both.
One aspect of LDN’s effect is to increase natural endorphins which block pain, and those effects can start after a couple of weeks, but it could take up to 8-12 weeks.
LDN also has an effect on inflammation and associated oxidative stress, and thus might help the actual health of the nerves, by taking off some of the biochemical stress.That effect could take longer, and can be influenced by other factors that affect nerve health, like sleep, nutrients, stress, etc.
Thanks. Glad to know.
You’re welcome
It sounds like it would be worthwhile to find someone to think about what could be causing low-grade inflammation and oxidative stress. Did you try the institute for functional medicine. They have a website with directory.
I have chronic inflammation of the spinal cord following surgery for a tarlov cyst on S1 nerve
root Oct 2016. I’m interested in trying LDN. I haven’t received effective pain management since surgery.
Hi Michelle
I can imagine that’s generating much pain.
As you probably have learned, there can be inflammatory responses in the spinal cord or in the area of the roots that exit the cord. Those inflammatory changes can cause sensitization of the nerves, which results in increased pain.
There are a few things that can shift the physiology toward less pain, more comfort, better life. LDN has a good chance of helping. There are others too.
In my experience, healing and recovery are best accomplished by addressing the 3 Ms. 1. Metabolic/Biochemical. 2. Mechanical/structural and 3. Mindbody.
1. Metabolic/Biochemical–that’s where LDN works. Shift the biochemistry and inflammation. There are other approaches that are safe/nutritional things to do her.
2. Mechanical Structural–the right kind of physical treatments can make a big impact. This is also where the right exercise fits in. After three years, sometimes the body has ‘forgotten’ how to move properly. The right kind of training can help the nerve/muscle/structural system to function better.
3. MindBody. We can’t deny the integration of our so-called “Body” with our “mind”. There really is no distinction. And chronic pain and other factors can really shift our thinking/beliefs/stress state, which can have an impact on pain, activity, and even inflammation.
My suggestion is to find a doc in your area who can look at the big picture, and see if LDN is a good idea. If you can’t find someone, you can reach out to my office as I also do virtual visits in some cases.
I wish you speedy healing!
LDN is usually taken at night. Theoretically that’s how it works best. But some people get vivid dreams or energized by it, and do better if they take it during the day. It has the potential to have an additive effect and help with the neuropathic pain. And it also shows promise in helping control Crohn’s.
Hi Michelle. Thanks for your comment. I hope you find a good solution. If you need more guidance, please reach out to my office and lets see what can be done. Wishing you all the best.
It can vary between 8-16 weeks. I usually also recommend that my patients address other aspect of nerve healing. There are nutrients that are relevant to mitochondrial function and nerve repair that are important. And also thinking carefully about other sources of biochemical stress in the body. I hope you have a speedy healing and feel better soon.
thanks 🙂
you’re welcome. glad you liked it. 🙂
Dr. Shiller, Thank you for this article. After undergoing many tests, my neurologist diagnosed me with “Severe” Idiopathic Axonal Polyneuropathy. Because my overall pain level is low, I declined the offer for the usual pain meds even though I have strong stocking/glove sensations in my legs/feet, numbness with hypersensitivity, random brief jabs of pain everywhere, progressing muscle weakness, and loss of balance requiring the use of a cane.
I’ve been disabled with ME/CFS for more than 30 years which was initially triggered by an acute episode of Epstein Barr Virus.
Now I’m wondering if my PN pain levels are low mostly because I’ve been of LDN (1 mg works best for me) for the last 4 years? hmmm… I initially started using LDN for overall fibro- ME/CFS pain and osteoarthritis in my back and neck. When I tried going off LDN my back pain returned with a vengeance.
In addition to LDN for pain I also take daily 1K mg curcumin, 40 mg naproxen, 1200 mg Mucinex, 15,000 mg d-ribose, and 300 mg CoQ 10.
For me, LDN has provided better results for pain than anything else I’ve tried over the past 30 years.
My Functional medical doctor suggested I try LDN for my neuropathy which I have had for 10 years. After reading this article I am going to start taking LND.
I have seen over 30 different doctors over the past 10 years, tried various
meds, supplements, therapies and injections which did not help. I have great
hope this will be the answer to my prayers! Thank you for this article.
Hi Suzi
Thanks for sharing your feedback.
Its very possible that your neuropathy pain levels are low because of the LDN. Its hard to know without stopping it, which sounds like it’s not a very comfortable experience for you.
Sometimes in cases like this it can be useful to add a mast cell stabilizing supplement like luteolin or palmethyolamide (PEA).
I wish you all the best in healing.
Hi JD
I’m glad you found a functional doctor who suggested LDN. I hope it’s helpful for you. Please let me/us know!
Dr Shiller: I wrote a few months ago but you did not comment and hope you will now. I have severe lower extremity peripheral neuropathy. Tried gabapentin up to 3300 mg per day w:o any success. Lyrica gave me brain fog so stopped that. Took alpha lipoic acid for about a year at 1200-1800mg and couldn’t detect anything helpful. Started LDN 4.5 mg about a year ago and it has helped about 40-50%. So added back in gabapentin now at 2400 mg and the combination makes my symptoms tolerable as long as I use topical CBD/THC salve at a 1:1 ratio on my feet at night. Tried backing off on the gabapentin but symptoms got worse so am back at 2400 mg.Also take 1500mg of curcumin, as well as B-12 , methylfolate and NAC. Still have significant tightness in my feet and lower leg and some numbness and problems w balance which am addressing with PT. Also have possible fibromyalgia and chronic pain and have had IBS/SIBO issues which I have addressed through significant weight loss and nutritional changes and biking and some walking. It seems as though all these issues have come one on the last 2-4 years. Now my doc wants to d/c the LDN which I believe to be the cornerstone of the improvements I’ve had in pain, needles and pins and electric shock like symptoms. The functional medicine docs in Spokane don’t take insurance. I’m on medicare and have a supplement and part D. But all the stuff that’s not covered by medicare is expensive. Any suggestions? I have an appt coming up in a couple weeks w my dr and am hoping to convince her to restart the LDN.
PS. Unknown etiology of the neuropathy
I was rx w CIDP following surgery of a fractured ankle 2015.
Was in a wheelchair 2 yrs delayed rx. On Ivig infusions, 60 mg. Every 3 weeks for 3 yrs. I can walk w a cane after mos of pt and myelin repair which is agonizingly slow.However as the function and feeling in my hands and feet returned, the neuropathy pain is excruciating. I get 30 mg of toradol I’ve push with the Ivig. For the next 2 days I feel almost normal, then it comes back, indicating myelin repair, but persistent inflammation. Do you have info on naltrexone for CIDP. Have tried, gaba, lyrica, cymbalta, Effexor, alpha lip. B complex, cbd oil, med mj. No help. My docs are at cornel Weill periph. Neuro . Center, York Ave. ny ny. You know who they are.
I can’t treat or advise specifics on the internet because it’s illegal. But if I had neuropathy, and I was using LDN, and it was helping, and my doctor insisted on stopping it, I’d ask, “why are you stopping this medication?”. And if there wasn’t a good answer, I’d say something like, “I have an organic diagnosis of peripheral neuropathy and I’ve been on a non-narcotic medication that has helped me and not caused side effects? Do you have justification for stopping it? And what do you intend to give me as a substitute? If you’re not giving me something effective as substitute, than it seems that you’re electing to cause me to suffer for no rational reason”.
There are online docs who prescribe LDN for certain patients–without a whole functional medicine workup.
If there is significant IBS and widespread pain of fibromyalgia, I’d wonder about a thorough effort to treat presumed dysbiosis and intestinal permeability. It’s a bit of a process.
One of the issues that likely is present in fibromyalgia is activation of glial cells, which are kind of like brain inflammatory cells. LDN is one agent that seems to reduce glial activation. There’s also a supplement called Mirica, which combines PEA and LUteolin, that helps many people with chronic pain. http://bit.ly/2pLM3Nd . Acknowledgement. If you buy through that link, they give me a slight fee that helps me research and write these posts. Feel free to buy it without that link by going to the site directly https://youngnutra.com/
It sounds like you’ve gone through the normal approach to pain management.
I don’t have specific info about LDN and CIDP.
One of the main things about neuropathic pain in general, is that wherever we look, it seems to be associated with central sensitization. That’s where there are changes in the brain and spinal cord processing of pain signals. Sometimes the usual meds work for that. Sometimes they don’t.
The reason why many of us cautiously use LDN in people with chronic pain, especially neuropathy and pain where there seems to be central sensitization is that it often addresses that underlying issue–regardless of the kind of neuropathy.
For sure, as I think you’ve all gathered, LDN is off-label use of a drug that has been used for a long time. But we don’t have any big controlled trials of using it in chronic pain. We have a few small studies, and lots of good anecdotal experience. In my judgment, it is something that is reasonable to use cautiously with medical supervision and see if it helps.
I am a 57 year old female. I’ve had Ulcerative Colitis since I’m 20 years old for 37 years. And in the past 15-20 years its been in remission with just few minor flares that were mitigated quickly. I’ve been on the the medication mesalamine for 37 years. About 20 months ago I had surgery for a deviated septum and One evening two weeks after the surgery I began to have terrible electrical pins and needles in face then immeadiately to feet legs hands arms lasting for hours. Since that day symptoms progressed to pain, numbness, muscle weakness, stabbing pain, electrical shock pain all over my body, and severe exhaustion even with any mild activity of daily living like brushing teeth, showering etc. I saw saw many neurologists and other physicians too many to count. My EMG and 2 skin biopsies were normal. Tons and tons of blood work to check for auto immune diseases etc. They were not able to find anything except a high histone antibody. So I was diagnosed with idiopathic Small Fiber Poly Neuropathy. One neurologist put on LDN telling me it might stop disease from progressing and help modulate immune system. Since my body is very sensitive I started LDN at 0.25mg and very slowly( took me months to work myself up to 2.5 mg. I’ve been on this dose for over 6 months. Not sure how much it’s helping. Perhaps I’d be a lot worse without it don’t know. I did try to go up to 3mg and symptoms worsened so after a week went back down ti 2.5mg and that where I’ve been for 7months. symptomatically my neuropathy symptoms have been progressing terribly with no improvement. I tried going down to 2mg and some symptoms got worse. So I went back to 2.5 mg. I know that peripheral nerves can rejuvenate and heal. This is what I want to accomplish. I want to target the Inflamation, Oxidative Stress, and Mitochondrial Dysfunction so my entire body can heal as well as my peripheral nerves. I want my life back!
Before this nightmare happened to me Iveas very active and energetic all day long and ran and power walked daily. After my surgery is when neuropathy began. Although I’m not doctor I believe that the fact that I had an underlying autoimmune disease UC for decades put me at high risk, and then the surgery added to the Oxidative stress began an a horrible inflammatory process where the inflammation & my immune system attacked my nerves. Also I had extreme severe stress in my life and loss of two siblings etc etc. during this time frame and going back to the past ten years I know this stress among other things like toxins etc. led to Severe Inflamation, Oxidative Stress, And Mitichondrial Dysfunction. So now I have no quality of life now. I am home bound and my husband has to help me with everything. Life is not worth living like this. Can I recover from this horrible horrible condition? Can my nerves regenerate? Is there hope for me? I am not looking for symptom relief or improvement. Will not settle for that. I want my nerves to regeuvanate so I could have my normal life back! Can you help me? What do you think about I.V.I.G therapy and Plasma exchange for Peripheral neuropathy? I will do and go anywhere to get well! I’m a fighter! Hope you can help. I would like to make an appointment with you. Thank you!
Hi CN. Thanks for writing. It sounds like it has been a very difficult time. I’m sorry you’re suffering so much. I admire your determination to get better. It sounds like you’re trying everything. There are some Centers that are experimenting with plasma exchange and IVIG for SFN. I can’t give medical advice on the blog, but in general, in a situation where there is a progressive and debilitating issue it can be worthwhile to try something experimental like that. I want to reflect back to you that you said you’re thinking about Inflammation, Oxidative Stress, And Mitochondrial Dysfunction. I don’t see mention made there of the trauma of the surgery. The immune system and the stress response are intimately connected. Surgery is a trauma, even when it goes well. If your system is “primed” it can have a conflagration that is meditated by the stress response in various ways. When I work with someone whose health has “tipped over” so dramatically after a surgery or trauma, it is very worthwhile to explore a therapeutic approach to address the mind-body relationships. And not just “talk therapy”, but an approach that works on deeper levels of the body-mind connection like hypnosis or EMDR or EFT or other approaches. It’s very important to find a therapist who is experienced and skillful in working with people who have had traumatic experiences and medical issues. Someone who can hold space and gently guide the client to release the aspects of surgical trauma or other traumas that may be ‘stuck’ in the neural net and energy system. I wish you speedy healing!
I have been trying LDN for severe myofascial pain and neuopathy fro chemo.5 years ago,I develop sweting at night that is intolerable even at ,5 mg. I think it even makes my pain worse,is that possible?
Hi Catherine. Thanks for the question.
I can’t give specific medical advice on a blog.
In general I can say that LDN can cause various unusual side effects, depending on the person’s individual physiology. There are opioid receptors all over the body in many different organ systems. Right after a person takes LDN and for several hours, there is an initial blockade of opioid effect.
And after that, especially at higher doses, there is an increase in the body’s activity of natural opioids enkephalin and endorphins. Either one of those effects could potentially cause side effects, according to the individual, and how their body’s opioid system is functioning, and according to other related systems. This basic idea is true for almost all medications, and even natural products.
The challenge is how to deal with it, because presumably a person is taking it because they’re wanting a solution to pain or other symptoms. And there are various things that can result in new symptoms. Sometimes it’s a coincidence that they happen around the same time as trying a new medication. What I often suggest my patients, when there is an unusual symptom like that, is to try an on/off/on/off process. Where you note the symptoms. Then stop the med and see if the symptoms go away, then restart it and see if they recur. That will give data that might help clarify if the side effect is really associated with the medication. It’s also worth considering with LDN that many side effects go away after a few days. So depending on how long the side effect has continued, it can be useful to ‘ride it out’.
I hope you find a solution to the situation soon!