I have ordered the Mucuna Pruriens that you recommended for an experiment to see if this supplement decreases my so called fibro pain. I understand this is not a long term fix, that it is an experiment that gives me the basis for the next decision. You can contact me at my email address if you are interested in hearing how it goes. buddah.mama@yahoo.com
I am doing the first two, of the three things you mentioned at the end of your article. 1. reducing stress, and keeping as calm as possible for as much of the time as possible. 2. avoid disappointment, and cultivate a mindset in which we learn to take pleasure in the motivating part, in the effort, the seeking and striving, because celebrating the win (a big, quick peak in dopamine) more than enjoying the pursuit, rebounds into the pain side of the pleasure-pain balance system, and too much of this will lower baseline levels of dopamine. I have some work to do on number 3. folks with fibromyalgia diagnosis will benefit by avoiding and overcoming addictions.
I was diagnosed with Lupus, Antiphospholipid syndrome and Fibromyalgia. It would now appear that I do not have these?? I have been 'undiagnosed'? It seemed that the drugs that they were giving me for one thing was causing another and so on and so on. I also have no spleen so it all started there. But the one that seemed to cause the most symptoms of the fibro pain and brain fog was Lanzoprazole? I haven't yet got to the bottom of this to be honest. But I now do 30 minutes pilates daily as well as walking and cycling and Cold water swimming twice a week. I did exercise before but was in constant pain in my joints. I rarely take pain killers now. One of the biggest game changers was giving up Sugar. I hope these ideas might help you too? Good luck.
Growl. I can't find it now. I think it was to do with tyrosine as a precursor to L Dopa and dopamine. I recall the article talking about how it contains the precursors to both dopamine and serotonin, that is tyrosine and tryptophan. I liked the idea because it would reduce the chance of dopamine supplementation stripping your serotonin levels. However, it would only work if you body is still capable of manufacturing dopamine. I found some other interesting sites while trying to find it, but not the article that talked about the tyrosine and the tryptophan.
Have you come across Andrew Huberman? He has a few stress reduction techniques that are physiological rather than behavioral or emotional - and insanely easy to incorporate into daily life. Here is just one of them, but the one I am successfully incorporating into life.
Thanks for taking this idea further Gary. One problem we have is with the "diagnosis" in the first place. The diseases we are diagnosed with, you with Parkinson's, me with Fibromyalgia and now "long covid" and type 2 diabetes, are NOT what is actually wrong with us. These diagnoses are, at best, sets of symptoms that might lead us to the true cause of our "malaise" if we follow them deeply enough - which medicine never does.
OUR INTERFACE WITH THE OUTSIDE WORLD AS THE CAUSE OF HEALTH OR DISEASE
I am building a thesis at the moment that ALL health is related to the interactions of our core metabolism, with the outside world. The body requires the right interactions with the outside world, which are, to some extent, determined by genetics. This goes from the obvious food, hydration and air, to light, perception of beauty, smell, grounding, toxins, EMFs, social relationships etc. And when we manage any of those interfaces badly, our entire body has to tweak all the systems in the body to redress the balance and find a new balance. Eventually our "balance" is so far away from true North, that we start to experience symptoms, but those symptoms are not what is wrong with us. They are telling us which part of our body systems is taking up the slack for the systems directly impacted by our faulty interface with the outside world.
Sorry, this is hard to explain without it seeming messy and complex because we have multiple interfacing ideas, that all work together.
Providing we are born fully functional, we all have a core metabolism we need for life, but we also have genetic limitations that might make us more vulnerable to particular physical breakdowns. The reason we get any disease is some breakdown in the interface between the body and the outside world. It is that interface that we have to manage better, and any intervention that does not address the faulty interface may work initially but the issue, whatever it is, will recur.
EXAMPLE OF CORE GENETICS REQUIRING INTERFACE ADAPTATIONS
As a simple example, my physiology is designed for low sun, northern climates. If I go out in the sun, my genetics mean I WILL burn. And if I stay in the sun I will continue to burn because I do not tan. Of course, I cannot recover if I continue to expose my melanin free skin to the sun. And it is not possible to "cure me" of being melanin deficient - that's down to genetics. In that context, my skin will recover from being burnt once or twice, but eventually will become damaged and even potentially cancerous. This is my interface with the outside world that I have not managed well. If I get skin cancer, I can possibly use black salve to cure this instance of the skin cancer, but if I am stupid enough to go back out in the sun, then I will get the same disease again because I am not correctly managing my interface with the outside world, based on my personal genetics.
IDENTIFYING THE FAULTY INTERFACE
So our problem is in how to identify and then fix our faulty relationship with the outside world. And for the syndromes this can be fairly invisible. We have to trace back from the visible symptoms such as pain and stiffness, to potential interface issues. And to date, both medicine and natural healing don't trace back far enough. They still believe the symptoms are the core of what is wrong, rather than being the body's valiant attempt to find a new balance to accommodate what is really wrong.
Weight issues are a good way of illustrating how we do do this already to some extent but how we get it terribly wrong. The symptom of our faulty interface with the outside world is apparently inappropriate weight gain. We start from the weight gain and we assume the interface that is not well managed is food intake, so we adjust our food intake, often with little effect. So what if the faulty interface is something else entirely - nothing to do with our food intake? We now know that a lot of metabolic issues are related to some form of autonomic nervous system glitch that is causing us to live in fight and flight mode, which in turn, causes our body to do the right thing and stack on weight to see us through the next emergency. Once we change our question from "what are we doing wrong" to "what is our body doing right", we can see the same symptoms quite differently.
This is harder to do with all the much less obvious syndromes but we can do it. I discovered, many years ago, when I met up with a lady while we were walking our dogs, who also had fibromyalgia. We conversed very easily and I spotted something. We were both outraged at various things happening in the world, and we were both utterly unable to find any way of intervening. I coined the term "impotent outrage" and started to see the pain of FMS reflecting my outrage of what I see in the world and the stiffness (and so reduction of mobility) as reflecting the impotence. I decided I did not want to become less outraged, so instead I had to work out how to be less impotent. But in reality, as the global conditions have worsened, and my ability to intervene has lessened, so my FMS+ symptoms have worsened. This is my faulty relationship with the outside world. I have to either reduce my outrage, or become more effective. I am still struggling to do the latter.
FINDING INTERVENTION POINTS TO FIX FAULTY INTERFACES
The difference for me now is Andrew Huberman, who has taken me on a journey to understanding body systems rather than body parts or symptoms. From watching/listening to a lot of his material I have become much more aware of the body systems that are responding to my interfaces with the outside world and doing the best they can to achieve balance and keep me alive despite my faulty interfaces. My body has adapted from it's "native balance" to a new balance, to accommodate my "impotent outrage" (and maybe other faulty interfaces). Our symptoms are no more than a signal that our body is striving valiantly to make up for our faulty interfaces with the outside world.
The greatest issue with this approach is its complexity. We have to determine which is the key interface that is not being well managed, identify the downstream results of that mismanagement, and then work out how to intervene to set a new relationship with the outside world at the appropriate intervention point. At the moment I am working on my obvious shortfall of dopamine. Will increasing my dopamine levels trigger a re-balancing of my bodily systems - well it has to, to some degree, but will that lead to a healing throughout my body, who knows? Only time will tell - depending on which part of my dopamine system has gone walkabout and whether the interventions I use cause it to re-balance.
THE BODY SYSTEMS AND THE INTERACTIONS BETWEEN THEM
Potentially we can intervene via a range of bodily systems. The autonomic nervous system (electrical messaging) interfacing with the endocrine system (hormonal messaging) and the enzymatic system (chemical messaging) - are the new frontiers, particularly for the sports medicine types but potentially also for the invisible diseases that are besetting us. I wonder if there is even a word and a medical category that deals with all three "messengers" in unison (hormones, nerves and enzymes). And are there more messaging systems? And does an intervention in any of them trigger a response in all of them? I am guessing yes to the last question, although would have no idea how to trace that from intervention to resolution.
In looking at the interventions I am currently taking:
I am doing a vagus nerve exercise to intervene in the parasympathetic nervous system.
I am doing a Huberman breathing exercise that is supposed to reduce the production of stress hormones and so intervene in the sympathetic nervous system.
I am taking a dopamine precursor and working on behaviours to stimulate the dopamine cycle.
I am taking herbs to ensure a healthy balance of gut enzymes.
I am trying to get early morning sun to improve my sleep cycles.
I am protecting myself as best I can from 5G EMFs to protect my nervous system generally.
So intuitively I have ended up with indirect interventions in all three systems.
Whether any of them work to turn around my health decline, only time will tell.
Agree with your analysis…..The interface with the world is so corrupted now, because it’s so far removed for how we originated born into tribes connected to each other parents children nurtured by other people in the group. This has to genetically altered our dna. Our economies in the western world have destabilised societies pitting us one against each other for meagre pickings. Toxic food, chemicals, etc. The threat of job loss, divorce, homelessness, etc. our nervous systems have become corrupted. So yes, our interface with the world is becoming more dangerous,
Yes there is a word that discribes the interface of those systems - it’s called psychoneuroendoimmunology (yes, really). Hormones are in there too now but the word was long enough already haha. I highly recommend you read “The Molecules of Emotion, by Candace Pert.
Thank you for uplifting this topic. It seems divide and conquer (silos and specializations) has been used in medicine and created the fog on purpose as the usual intent. Sigh. Even the med solution came to market place late. But never solved prob. Not a big surprise. Always suspected this when analyzing why, but of course never enough data to come up with the answer.
This was very gratifying to read. I have both ADHD and fibromyalgia, and had them both diagnosed around the same time. I did indeed have many years of prolonged, chronic stress (of many kinds, including a period of very little sleep per night), and then a viral illness broke the camel’s back.
Early on in my condition, when I was still very bad because I hadn’t worked out how to treat and then begin to heal myself (because doctors weren’t a great deal of help), I was trying to study a masters in Occupational Therapy (which didn’t go well because of the chronic state of stress my body was in). I recall learning about Parkinson’s in my neuroscience class and thinking how it’s sounded like what I was experiencing in nature (just not to the same degree). My teacher actually happened to select me as an example to walk across the class to show what smooth, normal walking was like, and I remember saying afterwards how I didn’t feel smooth, I FELT like I almost had cogwheel rigidity. She laughed and made fun of me (ouch),which I understand because I did look normal, but I didn’t feel it.
It felt like my fascia had shrunk, like I was wearing a body suit that was made of a very inelastic fabric and it was pulling me down. It was so exhausting to hold myself up, hold my neck against the feeling of it being pulled down (my head wanted to go forward and down). Every tendon felt really stiff at the end, and if I extended my joints fully they felt really stiff.
I mentioned the ADHD because when I got diagnosed with that, I found one of the medications helped me stand up more easily, helped my pain, and gave me the physical strength to do more things - I remember telling my psychiatrist it helped me to stand up straight. He told me that dopamine does have an analgesic effect, so I did know that, but I didn’t know that dopamine helps to make the fascia more fluid!
Personally, I definitely think BOTH factors play a significant role in the mediation of pain by dopamine. The analgesic impact yes, but I’m tempted to say equally the impact of it making fascia more fluid also.
I also happen to have macuna puriens which I take in a small dose to augment my adhd medication if I’m feeling particularly low in dopamine (whether I note that physically or cognitively). It does help also.
You may be interest to know that one way I check if I have adequate dopamine is to see if I can whistle loudly and comfortably. When I’m low dopamine, my mouth aches just trying to form the tight “o”, and I cannot form it tightly enough to produce much sound. When I have adequate dopamine, I can whistle comfortably and loudly (and sing better too).
It’s pleasing to have the connections I made validated by others! Yet also scary to have any link between me and Parkinson’s made, because it is something that scares me as a potential thing I might get! I can get bad restless legs and talk and move in my sleep a lot (hopefully not during REM, but I’m not sure!).
I have been reading about the evils of serotonin and how (rough outline here) it is raised in conjunction with cortisol in response to stress. It appears that it is not a “good guy” as has been represented.
I understand that famotidine ( Pepcid in the US) can block the production of serotonin in the gut.
I am experimenting with 20 mg at bedtime to stop the 3-4 hour awakening and subsequent sleepless hours.
The best method of slowing cortisol/ serotonin spikes is maximizing your metabolism, as any deficit in energy production (e.g. from fasting, low calorie diets, lack of carbohydrates, etc) is a stress signal, releasing all these bad guys.
I have read once that dopamine fluidizes the fascia/connective tissue, but serotonin dries it up, so have considered that serotonin isn't good for people with PD, especially as dopamine and serotonin seem to be inverse - one goes up the other comes down.
As a doctor of chiropractic, I have worked with fibromyalgia patients for nearly 30 years. My husband has it also.
I explained it as a switch that is flipped backwards and the dial is set on high. A neurological problem, thus giving reassurance to these people that they were not crazy.
Yes, I hope this also reassures people that there are definite mechanisms at play, as the "its all in your head" slur that many doctor say to folks they have diagnosed with fibromyalgia,, because they can't find any markers in blood tests etc is devastating and cruel.
Hello, I was able to cure a case of fibromyalgia using a suramin analogue. I'm confident that Robert Naviaux's Cell Danger Response is that common thread you are looking for between all of these chronic diseases.
I'm always happy to share details since it's such a novel experiment. I am told that brilliant blue g will have a similar effect for Parkinsons in particular - it was promising and easy enough that were my friend to have had Parkinsons instead of Fibromyalgia I would have tried that one.
Methylene blue is a very different thing from trypan blue. For example trypan blue does not cross the blood brain barrier while methylene blue does. It also does not have the action in the cell danger response that trypan blue/ suramin does.
How was it, by the way? I'll spend some time looking into a hypothetical brilliant blue g treatment but from what I recall it wouldn't be dramatically different from the suramin/trypan blue one
It worked - definitely does something - but sadly interacts with the l-dopa based parkinson's meds... gave me wild dangerous levels of dyskinesia and thought I would die of a heartattack....
That's a very interesting interaction worth looking into since I'm unfamiliar with the Parkinson's field. I do recall some trivia, if it helps at all, that dmso potentiates l-dopa medications dramatically. They even retested l-dopa medications that didn't work well, combined them with DMSO, and suddenly they worked well. It had something to do with DMSO enabling easier crossing of the blood brain barrier of such medicine
It was trypan blue. All the literature, and itself in practice, suggests that it is bioidentical to suramin except that it...turns you blue like a blue-man-group member for months. It's also 2 magnitudes cheaper than suramin and readily available. It was quite the harrowing experience but, honestly, the individual who formerly had fibro said he would be blue for the rest of his life if it meant the fibro was eliminated.
Are the blues actually switiching off the CDR or just blocking the ATP extracellular messaging [if i am remembering the CDR mechanisms right] - i.e. is it a "one and done" or taking it for long term?
To add to my post, it is a 'one and done' because it stops the runnaway cycle of CDR cells inducing more CDR. In his autism trials a single dose had lasting power and in our personal fibro trial we only needed a single dose. We were prepared to reapply the dosage every month if needed because the pain relief was so immediate and effective but it has been 8 months since then with no relapse
The suramin blocks the purinergic receptors, so as you thought yes it blocks the atp extracellular messaging. Now here's the interesting part - suramin is active in the human body for like a full month. Naviaux believed, and we tested to confirm, that the problem in CDR is that your cells continually release more extracellular atp to keep a runnaway process going and that once you silence it for a while it would stop on its own. He used the phrase, 'you are telling your body the war is over'.
typos: 'this would switch of the pain....' << switch off
'and the same with be true...' << would be true
question: what addictions do you refer to when saying '....why we are all so prone to addictions in the modern world....'? would that include every-day type of addictions, like diet or habits (coffee, sugar, alcohol, smoking)?
Thanks I will correct these in my morning now. Yes, I would include these - not sure about coffee. But compulsive shopping, workaholism, porn for men, gambling, checking social media, etc. See Anne Lembke's book Dopamine Nation for what she counts as addictions which have negative impacts on dopamine.
OK, thanks. being a fairly non-addictive person (even yearnings and cravings are limited) I find it really hard to imagine what addiction is and does, so I'll have to read up on it :-))
Huberman has lots of videos on dopamine that make it easier to understand. Just run a search on "Huberman dopamine" to find them. I don't suffer from addictions but for me it is quite the reverse. I have too little desire, and so I am not getting enough dopamine highs and lows rather than too extreme dopamine highs and lows.
What a fantastic resource! I can't tell you how important his stuff has been for me. I tend to resist being told what to do, but I find his totally non-judgemental approach - in effect reducing everything to chemistry rather than personal fault, has let me off the hook and allowed me to move on.
in the English language there's this beautiful construction, saying 'one should...' instead of 'you must...' or 'YOU should...'. having meandered into teaching (languages, tutoring, dance/music) I often use it and the implied objectivity often works well - never blame the student, it's always "the process"!
I have ordered the Mucuna Pruriens that you recommended for an experiment to see if this supplement decreases my so called fibro pain. I understand this is not a long term fix, that it is an experiment that gives me the basis for the next decision. You can contact me at my email address if you are interested in hearing how it goes. buddah.mama@yahoo.com
I am doing the first two, of the three things you mentioned at the end of your article. 1. reducing stress, and keeping as calm as possible for as much of the time as possible. 2. avoid disappointment, and cultivate a mindset in which we learn to take pleasure in the motivating part, in the effort, the seeking and striving, because celebrating the win (a big, quick peak in dopamine) more than enjoying the pursuit, rebounds into the pain side of the pleasure-pain balance system, and too much of this will lower baseline levels of dopamine. I have some work to do on number 3. folks with fibromyalgia diagnosis will benefit by avoiding and overcoming addictions.
I was diagnosed with Lupus, Antiphospholipid syndrome and Fibromyalgia. It would now appear that I do not have these?? I have been 'undiagnosed'? It seemed that the drugs that they were giving me for one thing was causing another and so on and so on. I also have no spleen so it all started there. But the one that seemed to cause the most symptoms of the fibro pain and brain fog was Lanzoprazole? I haven't yet got to the bottom of this to be honest. But I now do 30 minutes pilates daily as well as walking and cycling and Cold water swimming twice a week. I did exercise before but was in constant pain in my joints. I rarely take pain killers now. One of the biggest game changers was giving up Sugar. I hope these ideas might help you too? Good luck.
I have also been using olive leaf extract to reduce pain levels. It also stimulates dopamine production.
I am interested where you discovered that olive leaf stimulates dopamine?
Growl. I can't find it now. I think it was to do with tyrosine as a precursor to L Dopa and dopamine. I recall the article talking about how it contains the precursors to both dopamine and serotonin, that is tyrosine and tryptophan. I liked the idea because it would reduce the chance of dopamine supplementation stripping your serotonin levels. However, it would only work if you body is still capable of manufacturing dopamine. I found some other interesting sites while trying to find it, but not the article that talked about the tyrosine and the tryptophan.
This is a good general article but not what I was looking for. https://scienceofparkinsons.com/2017/06/01/oleuropein-surely-the-richest-gift-of-heaven/
Have you come across Andrew Huberman? He has a few stress reduction techniques that are physiological rather than behavioral or emotional - and insanely easy to incorporate into daily life. Here is just one of them, but the one I am successfully incorporating into life.
https://www.youtube.com/watch?v=kSZKIupBUuc
Yes Andrew Huberman is very good.
Thanks for taking this idea further Gary. One problem we have is with the "diagnosis" in the first place. The diseases we are diagnosed with, you with Parkinson's, me with Fibromyalgia and now "long covid" and type 2 diabetes, are NOT what is actually wrong with us. These diagnoses are, at best, sets of symptoms that might lead us to the true cause of our "malaise" if we follow them deeply enough - which medicine never does.
OUR INTERFACE WITH THE OUTSIDE WORLD AS THE CAUSE OF HEALTH OR DISEASE
I am building a thesis at the moment that ALL health is related to the interactions of our core metabolism, with the outside world. The body requires the right interactions with the outside world, which are, to some extent, determined by genetics. This goes from the obvious food, hydration and air, to light, perception of beauty, smell, grounding, toxins, EMFs, social relationships etc. And when we manage any of those interfaces badly, our entire body has to tweak all the systems in the body to redress the balance and find a new balance. Eventually our "balance" is so far away from true North, that we start to experience symptoms, but those symptoms are not what is wrong with us. They are telling us which part of our body systems is taking up the slack for the systems directly impacted by our faulty interface with the outside world.
Sorry, this is hard to explain without it seeming messy and complex because we have multiple interfacing ideas, that all work together.
Providing we are born fully functional, we all have a core metabolism we need for life, but we also have genetic limitations that might make us more vulnerable to particular physical breakdowns. The reason we get any disease is some breakdown in the interface between the body and the outside world. It is that interface that we have to manage better, and any intervention that does not address the faulty interface may work initially but the issue, whatever it is, will recur.
EXAMPLE OF CORE GENETICS REQUIRING INTERFACE ADAPTATIONS
As a simple example, my physiology is designed for low sun, northern climates. If I go out in the sun, my genetics mean I WILL burn. And if I stay in the sun I will continue to burn because I do not tan. Of course, I cannot recover if I continue to expose my melanin free skin to the sun. And it is not possible to "cure me" of being melanin deficient - that's down to genetics. In that context, my skin will recover from being burnt once or twice, but eventually will become damaged and even potentially cancerous. This is my interface with the outside world that I have not managed well. If I get skin cancer, I can possibly use black salve to cure this instance of the skin cancer, but if I am stupid enough to go back out in the sun, then I will get the same disease again because I am not correctly managing my interface with the outside world, based on my personal genetics.
IDENTIFYING THE FAULTY INTERFACE
So our problem is in how to identify and then fix our faulty relationship with the outside world. And for the syndromes this can be fairly invisible. We have to trace back from the visible symptoms such as pain and stiffness, to potential interface issues. And to date, both medicine and natural healing don't trace back far enough. They still believe the symptoms are the core of what is wrong, rather than being the body's valiant attempt to find a new balance to accommodate what is really wrong.
Weight issues are a good way of illustrating how we do do this already to some extent but how we get it terribly wrong. The symptom of our faulty interface with the outside world is apparently inappropriate weight gain. We start from the weight gain and we assume the interface that is not well managed is food intake, so we adjust our food intake, often with little effect. So what if the faulty interface is something else entirely - nothing to do with our food intake? We now know that a lot of metabolic issues are related to some form of autonomic nervous system glitch that is causing us to live in fight and flight mode, which in turn, causes our body to do the right thing and stack on weight to see us through the next emergency. Once we change our question from "what are we doing wrong" to "what is our body doing right", we can see the same symptoms quite differently.
This is harder to do with all the much less obvious syndromes but we can do it. I discovered, many years ago, when I met up with a lady while we were walking our dogs, who also had fibromyalgia. We conversed very easily and I spotted something. We were both outraged at various things happening in the world, and we were both utterly unable to find any way of intervening. I coined the term "impotent outrage" and started to see the pain of FMS reflecting my outrage of what I see in the world and the stiffness (and so reduction of mobility) as reflecting the impotence. I decided I did not want to become less outraged, so instead I had to work out how to be less impotent. But in reality, as the global conditions have worsened, and my ability to intervene has lessened, so my FMS+ symptoms have worsened. This is my faulty relationship with the outside world. I have to either reduce my outrage, or become more effective. I am still struggling to do the latter.
FINDING INTERVENTION POINTS TO FIX FAULTY INTERFACES
The difference for me now is Andrew Huberman, who has taken me on a journey to understanding body systems rather than body parts or symptoms. From watching/listening to a lot of his material I have become much more aware of the body systems that are responding to my interfaces with the outside world and doing the best they can to achieve balance and keep me alive despite my faulty interfaces. My body has adapted from it's "native balance" to a new balance, to accommodate my "impotent outrage" (and maybe other faulty interfaces). Our symptoms are no more than a signal that our body is striving valiantly to make up for our faulty interfaces with the outside world.
The greatest issue with this approach is its complexity. We have to determine which is the key interface that is not being well managed, identify the downstream results of that mismanagement, and then work out how to intervene to set a new relationship with the outside world at the appropriate intervention point. At the moment I am working on my obvious shortfall of dopamine. Will increasing my dopamine levels trigger a re-balancing of my bodily systems - well it has to, to some degree, but will that lead to a healing throughout my body, who knows? Only time will tell - depending on which part of my dopamine system has gone walkabout and whether the interventions I use cause it to re-balance.
THE BODY SYSTEMS AND THE INTERACTIONS BETWEEN THEM
Potentially we can intervene via a range of bodily systems. The autonomic nervous system (electrical messaging) interfacing with the endocrine system (hormonal messaging) and the enzymatic system (chemical messaging) - are the new frontiers, particularly for the sports medicine types but potentially also for the invisible diseases that are besetting us. I wonder if there is even a word and a medical category that deals with all three "messengers" in unison (hormones, nerves and enzymes). And are there more messaging systems? And does an intervention in any of them trigger a response in all of them? I am guessing yes to the last question, although would have no idea how to trace that from intervention to resolution.
In looking at the interventions I am currently taking:
I am doing a vagus nerve exercise to intervene in the parasympathetic nervous system.
I am doing a Huberman breathing exercise that is supposed to reduce the production of stress hormones and so intervene in the sympathetic nervous system.
I am taking a dopamine precursor and working on behaviours to stimulate the dopamine cycle.
I am taking herbs to ensure a healthy balance of gut enzymes.
I am trying to get early morning sun to improve my sleep cycles.
I am protecting myself as best I can from 5G EMFs to protect my nervous system generally.
So intuitively I have ended up with indirect interventions in all three systems.
Whether any of them work to turn around my health decline, only time will tell.
Thank you so much for this detailed explanation - I need to read it over a couple more times, but I think there is a lot to what you describe.
Agree with your analysis…..The interface with the world is so corrupted now, because it’s so far removed for how we originated born into tribes connected to each other parents children nurtured by other people in the group. This has to genetically altered our dna. Our economies in the western world have destabilised societies pitting us one against each other for meagre pickings. Toxic food, chemicals, etc. The threat of job loss, divorce, homelessness, etc. our nervous systems have become corrupted. So yes, our interface with the world is becoming more dangerous,
Yes there is a word that discribes the interface of those systems - it’s called psychoneuroendoimmunology (yes, really). Hormones are in there too now but the word was long enough already haha. I highly recommend you read “The Molecules of Emotion, by Candace Pert.
Thank you for uplifting this topic. It seems divide and conquer (silos and specializations) has been used in medicine and created the fog on purpose as the usual intent. Sigh. Even the med solution came to market place late. But never solved prob. Not a big surprise. Always suspected this when analyzing why, but of course never enough data to come up with the answer.
This was very gratifying to read. I have both ADHD and fibromyalgia, and had them both diagnosed around the same time. I did indeed have many years of prolonged, chronic stress (of many kinds, including a period of very little sleep per night), and then a viral illness broke the camel’s back.
Early on in my condition, when I was still very bad because I hadn’t worked out how to treat and then begin to heal myself (because doctors weren’t a great deal of help), I was trying to study a masters in Occupational Therapy (which didn’t go well because of the chronic state of stress my body was in). I recall learning about Parkinson’s in my neuroscience class and thinking how it’s sounded like what I was experiencing in nature (just not to the same degree). My teacher actually happened to select me as an example to walk across the class to show what smooth, normal walking was like, and I remember saying afterwards how I didn’t feel smooth, I FELT like I almost had cogwheel rigidity. She laughed and made fun of me (ouch),which I understand because I did look normal, but I didn’t feel it.
It felt like my fascia had shrunk, like I was wearing a body suit that was made of a very inelastic fabric and it was pulling me down. It was so exhausting to hold myself up, hold my neck against the feeling of it being pulled down (my head wanted to go forward and down). Every tendon felt really stiff at the end, and if I extended my joints fully they felt really stiff.
I mentioned the ADHD because when I got diagnosed with that, I found one of the medications helped me stand up more easily, helped my pain, and gave me the physical strength to do more things - I remember telling my psychiatrist it helped me to stand up straight. He told me that dopamine does have an analgesic effect, so I did know that, but I didn’t know that dopamine helps to make the fascia more fluid!
Personally, I definitely think BOTH factors play a significant role in the mediation of pain by dopamine. The analgesic impact yes, but I’m tempted to say equally the impact of it making fascia more fluid also.
I also happen to have macuna puriens which I take in a small dose to augment my adhd medication if I’m feeling particularly low in dopamine (whether I note that physically or cognitively). It does help also.
You may be interest to know that one way I check if I have adequate dopamine is to see if I can whistle loudly and comfortably. When I’m low dopamine, my mouth aches just trying to form the tight “o”, and I cannot form it tightly enough to produce much sound. When I have adequate dopamine, I can whistle comfortably and loudly (and sing better too).
It’s pleasing to have the connections I made validated by others! Yet also scary to have any link between me and Parkinson’s made, because it is something that scares me as a potential thing I might get! I can get bad restless legs and talk and move in my sleep a lot (hopefully not during REM, but I’m not sure!).
I have been reading about the evils of serotonin and how (rough outline here) it is raised in conjunction with cortisol in response to stress. It appears that it is not a “good guy” as has been represented.
I understand that famotidine ( Pepcid in the US) can block the production of serotonin in the gut.
I am experimenting with 20 mg at bedtime to stop the 3-4 hour awakening and subsequent sleepless hours.
The best method of slowing cortisol/ serotonin spikes is maximizing your metabolism, as any deficit in energy production (e.g. from fasting, low calorie diets, lack of carbohydrates, etc) is a stress signal, releasing all these bad guys.
I have read once that dopamine fluidizes the fascia/connective tissue, but serotonin dries it up, so have considered that serotonin isn't good for people with PD, especially as dopamine and serotonin seem to be inverse - one goes up the other comes down.
Fascinating... I’d be interested in hearing how your experiment goes
As a doctor of chiropractic, I have worked with fibromyalgia patients for nearly 30 years. My husband has it also.
I explained it as a switch that is flipped backwards and the dial is set on high. A neurological problem, thus giving reassurance to these people that they were not crazy.
Your words here have me thinking.
Yes, I hope this also reassures people that there are definite mechanisms at play, as the "its all in your head" slur that many doctor say to folks they have diagnosed with fibromyalgia,, because they can't find any markers in blood tests etc is devastating and cruel.
Hello, I was able to cure a case of fibromyalgia using a suramin analogue. I'm confident that Robert Naviaux's Cell Danger Response is that common thread you are looking for between all of these chronic diseases.
Interesting, what was the analogue - pharmaceutical or supplement?
I'm always happy to share details since it's such a novel experiment. I am told that brilliant blue g will have a similar effect for Parkinsons in particular - it was promising and easy enough that were my friend to have had Parkinsons instead of Fibromyalgia I would have tried that one.
I have heard of - and tried - methylene blue .
Methylene blue is a very different thing from trypan blue. For example trypan blue does not cross the blood brain barrier while methylene blue does. It also does not have the action in the cell danger response that trypan blue/ suramin does.
How was it, by the way? I'll spend some time looking into a hypothetical brilliant blue g treatment but from what I recall it wouldn't be dramatically different from the suramin/trypan blue one
It worked - definitely does something - but sadly interacts with the l-dopa based parkinson's meds... gave me wild dangerous levels of dyskinesia and thought I would die of a heartattack....
That's a very interesting interaction worth looking into since I'm unfamiliar with the Parkinson's field. I do recall some trivia, if it helps at all, that dmso potentiates l-dopa medications dramatically. They even retested l-dopa medications that didn't work well, combined them with DMSO, and suddenly they worked well. It had something to do with DMSO enabling easier crossing of the blood brain barrier of such medicine
It was trypan blue. All the literature, and itself in practice, suggests that it is bioidentical to suramin except that it...turns you blue like a blue-man-group member for months. It's also 2 magnitudes cheaper than suramin and readily available. It was quite the harrowing experience but, honestly, the individual who formerly had fibro said he would be blue for the rest of his life if it meant the fibro was eliminated.
Are the blues actually switiching off the CDR or just blocking the ATP extracellular messaging [if i am remembering the CDR mechanisms right] - i.e. is it a "one and done" or taking it for long term?
To add to my post, it is a 'one and done' because it stops the runnaway cycle of CDR cells inducing more CDR. In his autism trials a single dose had lasting power and in our personal fibro trial we only needed a single dose. We were prepared to reapply the dosage every month if needed because the pain relief was so immediate and effective but it has been 8 months since then with no relapse
The suramin blocks the purinergic receptors, so as you thought yes it blocks the atp extracellular messaging. Now here's the interesting part - suramin is active in the human body for like a full month. Naviaux believed, and we tested to confirm, that the problem in CDR is that your cells continually release more extracellular atp to keep a runnaway process going and that once you silence it for a while it would stop on its own. He used the phrase, 'you are telling your body the war is over'.
Yes, I see.
Just discovered this. I have FM, am overweight, had years of severe stress, insomnia, high cortisol. And low cellular mag levels. Really low.
I also have a Cytochrome P450 polymorphism that makes many common pain management and antidepressant type meds very unhelpful. It's been a trip.
I have long joked that I am unable to produce endorphins or dopamine. It's not a nice existence.
This is an intriguing rabbit hole.
Also... Dr Daniel Amen talks about it like this: you want to keep a steady dopamine drip, not a gushing faucet
I’ll just add to my other comments here, that Bowen Therapy is really good for hydrating fascia
Well said and well thought through, thank you
typos: 'this would switch of the pain....' << switch off
'and the same with be true...' << would be true
question: what addictions do you refer to when saying '....why we are all so prone to addictions in the modern world....'? would that include every-day type of addictions, like diet or habits (coffee, sugar, alcohol, smoking)?
Thanks I will correct these in my morning now. Yes, I would include these - not sure about coffee. But compulsive shopping, workaholism, porn for men, gambling, checking social media, etc. See Anne Lembke's book Dopamine Nation for what she counts as addictions which have negative impacts on dopamine.
OK, thanks. being a fairly non-addictive person (even yearnings and cravings are limited) I find it really hard to imagine what addiction is and does, so I'll have to read up on it :-))
Huberman has lots of videos on dopamine that make it easier to understand. Just run a search on "Huberman dopamine" to find them. I don't suffer from addictions but for me it is quite the reverse. I have too little desire, and so I am not getting enough dopamine highs and lows rather than too extreme dopamine highs and lows.
I tried to collect all Huberman's stuff on dopamine here... https://www.outthinkingparkinsons.com/articles/dopamine
What a fantastic resource! I can't tell you how important his stuff has been for me. I tend to resist being told what to do, but I find his totally non-judgemental approach - in effect reducing everything to chemistry rather than personal fault, has let me off the hook and allowed me to move on.
in the English language there's this beautiful construction, saying 'one should...' instead of 'you must...' or 'YOU should...'. having meandered into teaching (languages, tutoring, dance/music) I often use it and the implied objectivity often works well - never blame the student, it's always "the process"!
great, tq
🙏❤
Mucuna pruriens
Interesting that dopamine is antiviral/anti-bacterial - do you have any good links where I can learn more? 50% of the dopamine is in the gut, so this would have ramifications for microbiome... On addictions, here is my take on it: https://garysharpe.substack.com/p/book-review-dopamine-nation-finding and https://garysharpe.substack.com/p/the-role-of-disappointment-in-chronic
Very interesting indeed, thanks for making me aware of these links.