Join my email-community to receive reliable, MD-reviewed information, inspiration, and guidance to help you Reclaim Your Life From Unresolved Pain and Chronic Illness bit.ly/3aOrrsQ
I'm not even done watching this video, but I have the huge urge to comment on how grateful I am for doctors/people who are willing to look at and present a topic/illness in its actual complexity. I am SO tired of singular conclusions/considerstions despite we all knowing that we are very, very complex systems. Yes, most of us (be it patient or doctor) tend to prefer quick and easy fixes because we are suffering, but sometimes I'm wondering if maybe exactly this attitude has been keeping people from actually healing. Your presentation is very much appreciated!
Hi BV thanks for your feedback. I'm glad you recognize the issue of "single-cause" thinking in complex problems. I hear many people who are very busy chasing "single-cause, single-solutions" of complex chronic illness. My impression is they often don't have good success. I hope to be of continued service to you and others.
@@drshillermd ime going in ldn shortly I have fybromyalgia pelvic pain from fall 25 years I had CFS with that but now fybromyalgia is that usual my father had CFS but cured with thyroid medication my thyroid they say ok which they told my father for 15 years.will ldn sort thyroid if this is my problem as thyroid testing isn't good in fybro
@@drshillermd Oh, it's for myself. I timestamped where I left off, so I can finish watching the rest of it. Great presentation so far, I'm learning a lot. Thanks!
@@illement7 Wow what a great idea! So methodical! I never heard of anyone "bookmarking" a youtube video. Love it! You will learn alot and go far that way. Glad you like it. If you like my stuff you can get join the email community to get notifications of new posts here and blog stuff if you want: www.drshillerlearn.com
LDN helps with brain fog (maybe from POTS/ EDS) and neuopathic pain in my feet. I can feel when I forget a dose. I also use ketovore, yoga, meditation, reiki, exercise, etc. but I can not avoid strees (autistic single mom to autistic children, non-supportive, emotionally abusive family, low income) YOur proposed cycle is close to what I wrote to my doctor I experince. I think histamine and mechanical GI failure under the influnce of cortisol is a big part of the puzzle.
Thanks so much for your feedback and sharing your experience. I appreciate that you've learned so much about what supports your well-being. good to hear about how LDN is helping you. I totally hear about the difficult stressors you've had, and how you're contending with deeply wired stress reactivity, without alot of external support. It's a difficult situation. I don't know if this will be helpful, but here goes: I've come to see/believe that there is a place inside each of us that is "above" the biology and not dependent on the biology. Most people would call it a place of "spirit". I'm not talking about a religious perspective. It's an experiential perspective. Our elevated consciousness is not susceptible to the external or internal biological factors that drive the stress response. Sometimes we can learn to access it, and anchor ourselves there even in the context of stressful external and biological triggers. You could say that the observer is no longer sitting in the wildness of the body and emotion. It's sitting in a higher place. Anchored in stillness and clarity. And from there, it experiences the wildness and difficulties. It has a perspective of "I am not the pain. But I witness the pain". It's not an easy quick fix by any means. It takes time and practice to build the skill. But it is a possibility in some situations. How does that land for you?
One of the most comprehensive views on fibro I have seen in my 5 years of youtubing everything I could about it, looking up articles and even reading academic papers when I had the energy. Been living with fibro for 15 years now. Long vacations are what keep me alive XD Not on any meds but I supplement with maca-powder. Not many doctors know how to handle it (in Belgium) and those whose expertise give me a spark of hope (orthomolecular and holistic doctrors mainly) are too expensive for me (not being able to hold a job)
I'm enjoying your video, not done yet, but I disagree about one thing. Adrenal/chronic fatigue is a real thing. I've known people with it and I have it myself. It's just the term I disagree with, but the info your sharing is very interesting.
Hi Bonnie. I'm glad you like the video. 🙂 And I'm glad you shared your thoughts about adrenal/fatigue.🙂Let's clarify. I'm not suggesting that there chronic fatigue isn't real. It is. And in some cases, one of the major drivers of chronic fatigue is dysregulation of the adrenal hormone function. The "thing that's not a thing" that I was pointing out, is that it's not a disease of the adrenal gland. The adrenal gland isn't harmed or broken or sick. What gets sick in some folks is the feedback between the brain and the adrenal gland. It's like the thermostat gets turned down, and the adrenals don't produce a normal daily cycle of adrenal hormones. The problem is that the normal feedback that makes the brain stimulate the adrenals gets blunted. the gland itself isn't sick. That's evidenced by the fact that in most people who have dysregulated adrenals with fatigue, including many of my patients, when they get an ACTH stimulation test, their adrenal produces plenty of hormone. The problem is the feedback loop. Does that make sense from your end?
I agree that Lyme Disease needs to be suspected in anyone with fibro-like symptoms. But I caution that there is a danger with the Lyme diagnosis. Some people have clearly measurable evidence of Lyme. And they should be treated for Lyme. But some have no objective findings, and there is a clinical diagnosis of Lyme that some practitioners make, purely based on subjective symptoms. In some cases, a person can have late effects of Lyme with normal testing. So it's important to be open minded. But to not be so open-minded that your brain falls out. There is much room for error in those cases, where a person is diagnosed with Lyme with no objective findings. And the treatments are not without risk. So one needs to be very careful of whom you will allow to diagnose and treat Lyme.
I'm so glad you found things that helped. As you probably learned, Fibro and chronic pain and fatigue are multi-factorial. So the best results often come from a multifactorial process. Just so you know, many people get insomnia when they take it at night. My practice is that I tell my peeps to take it at night. But if causes insomnia or wild bothersome dreams, I tell them to take it in the morning. And that usually fixes the problem.
My father's CFS was triggered by antibiotics for which realy sick 6 years he's now ok was his thyroid in the end I've had CFS now fybro but ime going try this just done hypobiric therapy which has helped pain but changed it realy so still pain everyday
I've taken LDN for 2 years for two autoimmune conditions. It worked really well in conjunction with an anti inflammatory diet and now it's stopped working and my symptoms have returned. Do you have any suggestions of what I can do?
Hi Roneen. I hear the situation. That kind of thing is the reason for this video. As you may have seen, these chronic illnesses are complex. It's hard to say anything about the particulars of your case since I don't know. There are many different potential drivers of systemic inflammation, which can trigger auto-immunity in susceptible people. It's important to find a competent practitioner who can look at what you've been doing, and see if there are unexamined potential causes that could be continuing to drive the autoimmune process.
Just wondering if you still take it and if so what did u do to make it effictive again? Im having the same issue but it stopped working for me after a couple weeks. So i increased the dose and felt great for a day and it stopped working again.
@@kena2354 I stopped taking it because I was realizing that my bladder pain was not really autoimmune driven. I'm still trying to get to the bottom of it. I think stopping and starting again, a "drug holiday" works for most people.
@@thistooshallpass5425 Hi, In the last month I was able to stop the bladder pain after suffering for 3 years. I finally realized that even though I had been taking a low dose of estrogen at the onset of menopause, the dose was too low to help my bladder tissues. After trying everything, an elimination diet, LDN, ect I finally increased my estrogen and 95% of my pain disappeared. No one, not my GYN, nor my urologist suggested that this might be the culprit. I had to figure it out for myself. I suggest all women who experience this problem start with hormone levels, if that doesn't change symptoms then go from there.
I have just started LDN for Fibro, EDS, IC, stage 4 endo. I work at a desk fulltime battling these conditions and can't take anything that makes me drowsy. Thank you for this presentation. Subscribed! Best wishes from Australia.
Hi Kendall. I'm glad you liked it. I hope that it helps with your pain and other symptoms. I hope that you take to heart the message in the video, that with complex pain/chronic illness, it's important to address the underlying biological changes. In my experience, LDN works best together with a broader approach. I wish you speedy healing.
I have sever FM for 41 years since 1982 when I was 20 years old. I take 1 maybe 2 percocets 5/ 325 mg daily sometimes 1/2 a table depending on how bad my pain is. I also have ME. I have no other relief from the debilitating pain. I cannot acheive Slow Wave Delta / restorative sleep and the lack of deep restorative sleep is brutal. I'd like to try LDN. My questions are: 1. Will it help with sleep? 2. Will it help with ME? 3. How long after stopping all opioids can I take the LDN? You are very knowledgeable. I have been studying my illnesses since the onset of my symptoms. Excellent video the content is bang on accurate. Thank you kindly for any help you can offer me.
Hi and thanks for your kind comment. While I can't give specific advice here, I can share some general principles. First is that LDN blocks the opioid receptors for 3-5 hours. The concern about using opioids like percocet is that if LDN is blocking the receptors, then the opioid won't work. But if a person takes a short-acting opioid more than 4 hours after the LDN and more than 4 hours before it (since percocet usually works for around 4 hours) then there will be little or no blocking of the percocet effect. There is growing evidence that short-acting opioids, like the oxycodone in percocet, can dysregulate the opioid and increase pain sensitivity. So there may be a down side to using percocet at all, even when it gives short term benefit. Regarding sleep, I have two disparate experiences. One is that some people with FMS/CFS who have had poor and/or non-restorative sleep for years or decades sometimes have a massive improvement in sleep. And we know that's a big benefit in itself, on top of the improvement in immune balance and reduced pain sensitivity. Other people, when they take it at night, get stimulated/energized or have vivid dreams and it disturbs sleep. When they change the usual routine and take it by day, that problem almost universally goes away. I do use it in ME. Some people have benefited significantly. I recommend a much slower dose increase for people with ME/CFS, and a lower starting dose at 0.5mg or even 0.25mg. I hope you find improvement to your suffering and feel better soon. :-)
Tu, this was excellent! I have had mine deficiency for years, dx celiac 2003, mold injury, celiac dermatitis, environ allergies, long Lyme,+now 3 years long covid, vac injury. See 1o Drs here in RI, who treat 10 body symptoms, + don't know what I'm talking about. was pre med, so study all I can.. is there anyway to do a telemedicine, then use a compound rx to try ldn? Now having terrible gi, UTI, cystitis, etc, tu + blessings🙏💓
you don't have to increase the amount. Different dosing can bring different effect in different people. Many of the basic studies were done with a target dose of 4.5mg. Many of my patients do better at lower doses. It's very individualized.
You may be asking a different question then the first one I answered. You may be asking about someone who starts LDN and gets to a therapeutic dose which helps them. And over time, it stops working as well. Is that the issue? Like I say in the video, LDN addresses certain parts of the complex biology of chronic pain and illness, but not all of it. For instance, someone wit a history of trauma who has autonomic imbalance, or someone with chronic dysbiosis and immune imbalance. They might get benefit from LDN for awhile, but if they're not dealing with that other underlying issue, they will likely develop symptoms again.
It's a great question Ken A. I wonder that too. There are definitely some for whom it gradually stops working. I attribute that to these other variables that I discussed in the video. Chronic pain and fibro are complex multifactorial problems. There are many biological imbalances that appear to be involved in driving the symptoms. Depending on the person, that could include things like hidden infection, immune dysregulation, hormonal imbalance, dysbiosis, intestinal hyperpermeability, nutritional deficiencies, autonomic imbalance, and so on. LDN addresses some of the biological imbalances, which is why it helps many people. But there are deeper causes for those biological imbalances, and if those roots are not healed, then indeed, in my experience some folks relapse despite using LDN.
@@patriciagriffin1505 thanks for your comment. Was that helfpul for you? if you feel comfortable doing so, please spell out what you're saying, as other watchers/readers might appreciate hearing exactly what you mean.
Join my email-community to receive reliable, MD-reviewed information, inspiration, and guidance to help you Reclaim Your Life From Unresolved Pain and Chronic Illness
bit.ly/3aOrrsQ
I guess Im pretty randomly asking but does anybody know a good place to watch new movies online?
I'm not even done watching this video, but I have the huge urge to comment on how grateful I am for doctors/people who are willing to look at and present a topic/illness in its actual complexity. I am SO tired of singular conclusions/considerstions despite we all knowing that we are very, very complex systems. Yes, most of us (be it patient or doctor) tend to prefer quick and easy fixes because we are suffering, but sometimes I'm wondering if maybe exactly this attitude has been keeping people from actually healing. Your presentation is very much appreciated!
Hi BV thanks for your feedback. I'm glad you recognize the issue of "single-cause" thinking in complex problems. I hear many people who are very busy chasing "single-cause, single-solutions" of complex chronic illness. My impression is they often don't have good success. I hope to be of continued service to you and others.
... If you ever need/want a new complex challenge, please do consider digging into endometriosis 😊
@@drshillermd ime going in ldn shortly I have fybromyalgia pelvic pain from fall 25 years I had CFS with that but now fybromyalgia is that usual my father had CFS but cured with thyroid medication my thyroid they say ok which they told my father for 15 years.will ldn sort thyroid if this is my problem as thyroid testing isn't good in fybro
21:29
hi. why did you timestamp that?
@@drshillermd Oh, it's for myself. I timestamped where I left off, so I can finish watching the rest of it. Great presentation so far, I'm learning a lot. Thanks!
@@illement7 Wow what a great idea! So methodical! I never heard of anyone "bookmarking" a youtube video. Love it! You will learn alot and go far that way. Glad you like it. If you like my stuff you can get join the email community to get notifications of new posts here and blog stuff if you want: www.drshillerlearn.com
@@drshillermd Haha, alright I'll join. 👍🏻
LDN helps with brain fog (maybe from POTS/ EDS) and neuopathic pain in my feet. I can feel when I forget a dose. I also use ketovore, yoga, meditation, reiki, exercise, etc. but I can not avoid strees (autistic single mom to autistic children, non-supportive, emotionally abusive family, low income) YOur proposed cycle is close to what I wrote to my doctor I experince. I think histamine and mechanical GI failure under the influnce of cortisol is a big part of the puzzle.
Thanks so much for your feedback and sharing your experience. I appreciate that you've learned so much about what supports your well-being. good to hear about how LDN is helping you.
I totally hear about the difficult stressors you've had, and how you're contending with deeply wired stress reactivity, without alot of external support. It's a difficult situation.
I don't know if this will be helpful, but here goes: I've come to see/believe that there is a place inside each of us that is "above" the biology and not dependent on the biology. Most people would call it a place of "spirit". I'm not talking about a religious perspective. It's an experiential perspective. Our elevated consciousness is not susceptible to the external or internal biological factors that drive the stress response. Sometimes we can learn to access it, and anchor ourselves there even in the context of stressful external and biological triggers. You could say that the observer is no longer sitting in the wildness of the body and emotion. It's sitting in a higher place. Anchored in stillness and clarity. And from there, it experiences the wildness and difficulties. It has a perspective of "I am not the pain. But I witness the pain". It's not an easy quick fix by any means. It takes time and practice to build the skill. But it is a possibility in some situations.
How does that land for you?
One of the most comprehensive views on fibro I have seen in my 5 years of youtubing everything I could about it, looking up articles and even reading academic papers when I had the energy. Been living with fibro for 15 years now. Long vacations are what keep me alive XD Not on any meds but I supplement with maca-powder. Not many doctors know how to handle it (in Belgium) and those whose expertise give me a spark of hope (orthomolecular and holistic doctrors mainly) are too expensive for me (not being able to hold a job)
Thanks for your comment!
I hope you find success in getting help sometime soon. Wishing you all the best.
Seams alot have OCD preceding this as in myself and I believe Asperger's spectrum and hypomobility
I'm enjoying your video, not done yet, but I disagree about one thing. Adrenal/chronic fatigue is a real thing. I've known people with it and I have it myself. It's just the term I disagree with, but the info your sharing is very interesting.
Hi Bonnie. I'm glad you like the video. 🙂 And I'm glad you shared your thoughts about adrenal/fatigue.🙂Let's clarify. I'm not suggesting that there chronic fatigue isn't real. It is. And in some cases, one of the major drivers of chronic fatigue is dysregulation of the adrenal hormone function. The "thing that's not a thing" that I was pointing out, is that it's not a disease of the adrenal gland. The adrenal gland isn't harmed or broken or sick. What gets sick in some folks is the feedback between the brain and the adrenal gland. It's like the thermostat gets turned down, and the adrenals don't produce a normal daily cycle of adrenal hormones. The problem is that the normal feedback that makes the brain stimulate the adrenals gets blunted. the gland itself isn't sick. That's evidenced by the fact that in most people who have dysregulated adrenals with fatigue, including many of my patients, when they get an ACTH stimulation test, their adrenal produces plenty of hormone. The problem is the feedback loop. Does that make sense from your end?
@@andrewdavidshiller4158 Yes, that makes sense. Thanks for replying!
Can physical trauma like concussion and a. cervical spinal fusion cause these symptoms?
Lymes has same symptoms, get tested!
I agree that Lyme Disease needs to be suspected in anyone with fibro-like symptoms. But I caution that there is a danger with the Lyme diagnosis. Some people have clearly measurable evidence of Lyme. And they should be treated for Lyme. But some have no objective findings, and there is a clinical diagnosis of Lyme that some practitioners make, purely based on subjective symptoms.
In some cases, a person can have late effects of Lyme with normal testing. So it's important to be open minded. But to not be so open-minded that your brain falls out.
There is much room for error in those cases, where a person is diagnosed with Lyme with no objective findings. And the treatments are not without risk. So one needs to be very careful of whom you will allow to diagnose and treat Lyme.
agree 100%
Excellent! Rings true!
I found LDN gave me bad insomnia. I had some success with Adenasine Triphosphate for FMS. It helped with fatigue. Carnivore diet helped, too.
I'm so glad you found things that helped. As you probably learned, Fibro and chronic pain and fatigue are multi-factorial. So the best results often come from a multifactorial process. Just so you know, many people get insomnia when they take it at night. My practice is that I tell my peeps to take it at night. But if causes insomnia or wild bothersome dreams, I tell them to take it in the morning. And that usually fixes the problem.
@@drshillermd thanks a lot for the info!
@@aquious953 right on!
My father's CFS was triggered by antibiotics for which realy sick 6 years he's now ok was his thyroid in the end I've had CFS now fybro but ime going try this just done hypobiric therapy which has helped pain but changed it realy so still pain everyday
I've taken LDN for 2 years for two autoimmune conditions. It worked really well in conjunction with an anti inflammatory diet and now it's stopped working and my symptoms have returned. Do you have any suggestions of what I can do?
Hi Roneen. I hear the situation. That kind of thing is the reason for this video. As you may have seen, these chronic illnesses are complex. It's hard to say anything about the particulars of your case since I don't know. There are many different potential drivers of systemic inflammation, which can trigger auto-immunity in susceptible people. It's important to find a competent practitioner who can look at what you've been doing, and see if there are unexamined potential causes that could be continuing to drive the autoimmune process.
Just wondering if you still take it and if so what did u do to make it effictive again? Im having the same issue but it stopped working for me after a couple weeks. So i increased the dose and felt great for a day and it stopped working again.
@@kena2354 I stopped taking it because I was realizing that my bladder pain was not really autoimmune driven. I'm still trying to get to the bottom of it. I think stopping and starting again, a "drug holiday" works for most people.
@@thistooshallpass5425 Hi, In the last month I was able to stop the bladder pain after suffering for 3 years. I finally realized that even though I had been taking a low dose of estrogen at the onset of menopause, the dose was too low to help my bladder tissues. After trying everything, an elimination diet, LDN, ect I finally increased my estrogen and 95% of my pain disappeared. No one, not my GYN, nor my urologist suggested that this might be the culprit. I had to figure it out for myself. I suggest all women who experience this problem start with hormone levels, if that doesn't change symptoms then go from there.
@@roneen1000 did you have.muscle pain
And we all have hypomobility and I believe both my parents have Asperger's as myself my son been tested for it all had OCD apart from father from 5
I have just started LDN for Fibro, EDS, IC, stage 4 endo. I work at a desk fulltime battling these conditions and can't take anything that makes me drowsy. Thank you for this presentation. Subscribed! Best wishes from Australia.
Hi Kendall. I'm glad you liked it. I hope that it helps with your pain and other symptoms. I hope that you take to heart the message in the video, that with complex pain/chronic illness, it's important to address the underlying biological changes. In my experience, LDN works best together with a broader approach. I wish you speedy healing.
I have sever FM for 41 years since 1982 when I was 20 years old. I take 1 maybe 2 percocets 5/ 325 mg daily sometimes 1/2 a table depending on how bad my pain is. I also have ME.
I have no other relief from the debilitating pain. I cannot acheive Slow Wave Delta / restorative sleep and the lack of deep restorative sleep is brutal.
I'd like to try LDN. My questions are:
1. Will it help with sleep?
2. Will it help with ME?
3. How long after stopping all opioids can I take the LDN?
You are very knowledgeable. I have been studying my illnesses since the onset of my symptoms.
Excellent video the content is bang on accurate.
Thank you kindly for any help you can offer me.
Hi and thanks for your kind comment. While I can't give specific advice here, I can share some general principles.
First is that LDN blocks the opioid receptors for 3-5 hours. The concern about using opioids like percocet is that if LDN is blocking the receptors, then the opioid won't work. But if a person takes a short-acting opioid more than 4 hours after the LDN and more than 4 hours before it (since percocet usually works for around 4 hours) then there will be little or no blocking of the percocet effect.
There is growing evidence that short-acting opioids, like the oxycodone in percocet, can dysregulate the opioid and increase pain sensitivity. So there may be a down side to using percocet at all, even when it gives short term benefit.
Regarding sleep, I have two disparate experiences. One is that some people with FMS/CFS who have had poor and/or non-restorative sleep for years or decades sometimes have a massive improvement in sleep. And we know that's a big benefit in itself, on top of the improvement in immune balance and reduced pain sensitivity.
Other people, when they take it at night, get stimulated/energized or have vivid dreams and it disturbs sleep. When they change the usual routine and take it by day, that problem almost universally goes away.
I do use it in ME. Some people have benefited significantly. I recommend a much slower dose increase for people with ME/CFS, and a lower starting dose at 0.5mg or even 0.25mg.
I hope you find improvement to your suffering and feel better soon. :-)
@@drshillermd Thank you doctor Shiller for taking time to reply to me. I am so grateful and I wish you all the very very best.
Tu, this was excellent! I have had mine deficiency for years, dx celiac 2003, mold injury, celiac dermatitis, environ allergies, long Lyme,+now 3 years long covid, vac injury. See 1o Drs here in RI, who treat 10 body symptoms, + don't know what I'm talking about. was pre med, so study all I can.. is there anyway to do a telemedicine, then use a compound rx to try ldn? Now having terrible gi, UTI, cystitis, etc, tu + blessings🙏💓
Like your research
Hi , if the low dose of ldn works fine in the beginning and it keeps working fine why do the patient have to increase the amount ?
you don't have to increase the amount. Different dosing can bring different effect in different people. Many of the basic studies were done with a target dose of 4.5mg. Many of my patients do better at lower doses. It's very individualized.
You may be asking a different question then the first one I answered. You may be asking about someone who starts LDN and gets to a therapeutic dose which helps them. And over time, it stops working as well. Is that the issue?
Like I say in the video, LDN addresses certain parts of the complex biology of chronic pain and illness, but not all of it. For instance, someone wit a history of trauma who has autonomic imbalance, or someone with chronic dysbiosis and immune imbalance. They might get benefit from LDN for awhile, but if they're not dealing with that other underlying issue, they will likely develop symptoms again.
Thanks doc. ,!,
Amazing!
glad you liked it. Did anything in particular stand out?
I wonder how many people LDN worked great for and all of a sudden stopped working.
It's a great question Ken A. I wonder that too. There are definitely some for whom it gradually stops working. I attribute that to these other variables that I discussed in the video. Chronic pain and fibro are complex multifactorial problems. There are many biological imbalances that appear to be involved in driving the symptoms. Depending on the person, that could include things like hidden infection, immune dysregulation, hormonal imbalance, dysbiosis, intestinal hyperpermeability, nutritional deficiencies, autonomic imbalance, and so on. LDN addresses some of the biological imbalances, which is why it helps many people. But there are deeper causes for those biological imbalances, and if those roots are not healed, then indeed, in my experience some folks relapse despite using LDN.
@@drshillermdit’s helpful if the dose is pulsed
@@patriciagriffin1505 thanks for your comment. Was that helfpul for you?
if you feel comfortable doing so, please spell out what you're saying, as other watchers/readers might appreciate hearing exactly what you mean.
Thank you
glad you liked it. You're welcome.
So ongoing stress stops ldn working so well
great informations