Beta Endorphin Deficiency - The Elephant in the Room

[xks201]

http://www.ncbi.nlm.nih.gov/pubmed/12131069

I'm coming to the conclusion that yeah if food allergies, hormones, and infections are coming back good then it might be time to consider the body's deficiency in mounting a stress response (which includes beta endorphin production).

My pituitary produces no hormones. Yet, I have replaced all of the hormones I was told I needed to replace. Little did I realize that the primary endorphin is indeed made in the pituitary.

Here I have a study showing "significant decreases" in beta endorphin in fibromyalgia AND Chronic Fatigue patients.

Pop half a vicodin (which I was rxed) and boom, motivation to withstand the world. The OI, the everything else, could possibly just be a compensation/defense mechanism response to the body basically realizing that it cannot handle stress.

Now you might ask why isn't this further researched? Probably because our governments make billions in tax dollars if not more of making opiates and other drugs illegal. It's no wonder most of us started out depressed and unable to withstand stress before completely breaking down. Perhaps we were beta endorphin deficient from the start.

And as for LDN, please don't say...oh well I didn't respond to LDN so this isn't true. You guys know LDN blocks opiate receptors and will only work if your pituitary can make more beta endorphin the next day? The LDN approach is only to be used on people who have some sort of signaling problem, not people who have genuine inability to produce beta endorphin.

 

[Ema]

I agree, this is definitely an area that could use more study.

I took opiates for many years after a terrible accident and I always felt "normal" ie not high. Happy, confident, motivated etc. but then as I got sicker, the opiates stopped working. I stopped them with few problems but have always wondered why they worked so well for so long.

My inclination is that histamine had a role in the failure because opiates are massive histamine releasers and possibly also an inhibition of ACTH.

I'd think about trying it again except it is near next to impossible to get opiates prescribed in the state where I live. I have found some success with DPA and I've also considered trying Wellbutrin.

It's a mystery so far!

 

[xks201]

Found studies showing beta endorphin is needed for energy production and cancer prevention. So they stimulate the immune system and it also said opiates inhibit the sympathetic nervous system. Most of us have a hyperactive sns causing pots/oi as well. This is the elephant in the room.

Maybe your body stopped making them after being on them.

 

[Tristen]

I like it!!! Thanks xks201, and thanks for the link. This is right in light with where I've been for about a year now. Something of great importance going on with this issue and it does need immediate attention. After back surgery 15 years ago, I had experienced me/cfs symptom relief with opioids, but I just wrote it off as coincidence. Now again this time having to take the drugs and experiencing the same thing has put me on a path of searching for the answer. I am looking for something non narcotic that would have the same effect. Looking at things like this with pituitary or endorphin deficiency should open those doors.

I'm not sure how I feel about the idea of having a "pre-disease" beta endorphin deficiency. I didn't seem to lack any of those kinds of stress or pain relief hormones because I was on top of the world with both mental and physical health for decades before disease onset. But I certainly do believe that to be an issue now. Looking at my experience, it does seem the deficiency is being fueled by something acquired (ie, infection) rather than being pre-existing. Whatever it is, the response to these drugs is quite profound and should attract much attention from the researchers

It is very intriguing as to why some of our own researchers have not latched onto this since it does seem to be quite significant. I think the reason it hasn't is because they just haven't had much reporting on this from the patients. Sure seems new to me. I hadn't met anyone reporting this until recently.

Yep, and the LDN makes me really sick......probably worse offender I've ever experienced.

 

[lansbergen]

http://www.nature.com/npp/journal/v19/n5/full/1395217a.html
Effects of the Immunostimulant, Levamisole, on Opiate Withdrawal and Levels of Endogenous Opiate Alkaloids and Monoamine Neurotransmitters in Rat Brain

If this works in humans too, mine must be high

 

[heapsreal]

Dr Bell has written about a patient who had improved pots/oi symptoms with codeine, at first he was worried about addiction but her dose never changed for years, generally if one gets addicted than the dosage slowly goes up but not with this patient. i think dr bell believed that she was probably replacing her on endorphins?? I had a quick google search but couldnt find it?? I dont think this treatment was for everyone though.

 

[Dufresne]

Pop half a vicodin (which I was rxed) and boom, motivation to withstand the world. The OI, the everything else, could possibly just be a compensation/defense mechanism response to the body basically realizing that it cannot handle stress.

Or perhaps it’s the other way around. Maybe beta-endorphin is down-regulated because the body can’t handle it. I believe endorphins act as vasodilators to some extent and that the body views them as counterproductive with the circulatory problems that are essentially uniform in our population. Overriding this may put more strain on the body in the long run.

But this is just a theory of mine, it seems a lot of people are helped by LDN. I’ve felt the lift you speak of with opiates, how it gives you the 'motivation to withstand the world.’ I’ve felt even better in the days after my opiate doses. It’s not my inclination to support systems that test low in my diseased body, but this is one of the messengers I’ve strongly considered replacing. It’s too bad in my case it comes with a strong negative on the backend.

There are studies showing opiates as having vasodilatory effects. De Meirleir believes it has the effect of vasodilation of finer vessels and vasoconstriction of larger ones. This may be true but my experience is that LDN, as well as opiates, have a net dilatory effect. On the other side Dr Cheney has spoken of how morphine is used in cases of heart attack. And his ETM system charts Vicodin itself as beneficial for at least one person with ME/CFS.

So I think opiate enhancement for the brain is very good in our condition, but might put more strain on our circulatory system.

 

[Dufresne]

I like it!!! Thanks xks201, and thanks for the link. This is right in light with where I've been for about a year now. Something of great importance going on with this issue and it does need immediate attention. After back surgery 15 years ago, I had experienced me/cfs symptom relief with opioids, but I just wrote it off as coincidence. Now again this time having to take the drugs and experiencing the same thing has put me on a path of searching for the answer. I am looking for something non narcotic that would have the same effect. Looking at things like this with pituitary or endorphin deficiency should open those doors.

I'm not sure how I feel about the idea of having a "pre-disease" beta endorphin deficiency. I didn't seem to lack any of those kinds of stress or pain relief hormones because I was on top of the world with both mental and physical health for decades before disease onset. But I certainly do believe that to be an issue now. Looking at my experience, it does seem the deficiency is being fueled by something acquired (ie, infection) rather than being pre-existing. Whatever it is, the response to these drugs is quite profound and should attract much attention from the researchers

It is very intriguing as to why some of our own researchers have not latched onto this since it does seem to be quite significant. I think the reason it hasn't is because they just haven't had much reporting on this from the patients. Sure seems new to me. I hadn't met anyone reporting this until recently.

Yep, and the LDN makes me really sick......probably worse offender I've ever experienced.

Hi Tristen. I never asked you what dose of LDN you started with. I’m guessing you’re aware that many with our condition have experienced horrible effects of LDN because they started too high. It’s recommended that we commence with a dose of .5 of a mg or less.

 

[Tristen]

Dr Bell has written about a patient who had improved pots/oi symptoms with codeine, at first he was worried about addiction but her dose never changed for years, generally if one gets addicted than the dosage slowly goes up but not with this patient. i think dr bell believed that she was probably replacing her on endorphins?? I had a quick google search but couldnt find it?? I dont think this treatment was for everyone though.

It does seem it's a small subgroup that responds favorably to opioids.....otherwise surely we would have heard more on this long ago.

 

[Tristen]

Hi Tristen. I never asked you what dose of LDN you started with. I’m guessing you’re aware that many with our condition have experienced horrible effects of LDN because they started too high. It’s recommended that we commence with a dose of .5 of a mg or less.

Yea, I did the low and slow thing. I tried miniscule doses and was breaking the compounded 5mg capsules down into much smaller doses. Maybe got as low as 1mg the last time. The standard dose of Naltrexone for an OD of narcotics is 50mg.....that would kill me.

It's been a long time since trying LDN. I have changed a lot in how I respond to things over the years and thinking of giving it another try. But I will not do the thing of staying the course even if feeling much worse......not willing to do that one. Seen a few too many reports of people being pushed into relapse that way.

 

[xks201]

If your ADH and fludrocortisone and cortisl signaling is in tact then the circulatory stress of added vasodilation shouldn't be an issue. I've taken agmatine with cialis in an attempt to dilate blood vessels and did not experience this stress. The opiate vasodilation effect is weak compared to that in my opinion.

Like I said, I think the circulatory dysfunction is the result of low opiates, since opiates are very much responsible for inhibiting the sympathetic fight or flight nervous system.

Everyone here could have other intricacies involved like partial diabetes insipidus or whatever. I know that I was never very resistant to stress. Apparently there are genes that can leave people opiate deficient. Maybe the whole low serotonin thing is really more of a low opiate thing.

But if more people had opiate levels checked - perhaps the criminalization of addiction wouldn't become as important in the public eye. And we all know what that would mean for govt funding right.

I'm almost tempted to try suboxone with the blessing of a doctor. Vicodin is short acting. I can't imagine how life would be if I left like that 24/7. And I'm not talking about feeling high - just normal and not depressed - how I felt before my head injury.

The studies are showing opiate deficiency in fibromyalgia and CFS, significant opiate deficiency. IDK how much clearer it can get. There are a lot of other mechanisms for compensation if there was such circulatory stress that I think would kick in first before something as partially innocuous as opiate induced vasodilation downregulation. Sure the SNS and norepinephrine signaling will increase in response to an energy or hormone deficiency, but from what I am reading the opiate system has a lot to do with energy production.

I've never abused these types of drugs in my life. But considering the alternative - a lot of us would probably be labeled abusers than live a life of misery in bed. lol

 

[AbbyDear]

Not sure whre i am at but morphine class meds made things worse for me, could not tolerate at all. One thought (of mine) was that they favored the para-sympathic side, which in general is already dominant (in many respects). I have not tried LDN. I have circulation issues as well.

I think there are other threads in PR suggesting opiates may help.

 

[Marlène]

LDN was the most difficult treatment I ever tried. I lost balance, was unable to make a sandwich for my small kid who had sometimes to wait till noon till I was able to move, the pain was unbearable, ... but I never experienced such benefits either! LDN has changed my life. It didn't heal me but I'm definitively stronger, have less symptoms, recover much more quickly.
Yesterday I sat on a horse for 3 three hours (ok it was very tough, I was counting the minutes). Five years ago I was bedridden in a dark room.

 

[Snow Leopard]

Beta Endorphin, classically described as "a morphine-like peptide induces a state of lethargy, passivity and skeletal muscle relaxation."

Lower Beta Endorphin may in part explain greater pain, but does not explain fatigue at all.

But I think we need to look much deeper than the idea of Beta Endorphin as an analgesic, indeed it has affinity with much more than the μ-opioid receptor and has other functions.

Literature has shown that beta-endorphin secretion is related to levels of physical activity (lower activity equals lower secretion). However over time, after endurance training, overall beta-endorphin secretion levels have been shown to drop (likely due to increased receptor expression or function).

Beta Endorphin has also been shown to increase the activity of NK Cells and T-Cells (resulting in increased cytotoxic behaviour/inflammatory response).
All sorts of weird and wonderful observations have been made:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1385018/
http://www.ncbi.nlm.nih.gov/pubmed/9703207
http://www.sciencedirect.com/science/article/pii/0149763479900058
etc

The observation in the aforementioned study could be as simple as poor-case control matching (not using sedentary controls), or could be an indicator of an overall immunological shift (which is indeed in line with the other observations that have been made so far in the literature). It is worth replicating to see however.

 

[xks201]

Beta endorphin is intimately related with energy production amd immune function. You aren't looking at enough studies if you aren't connecting the dots.

Morphine is a completely different animal. No one should feel normal on.a drug that strong. I didn't.

And yes its indeed an immunlogical shift. Its th2 hyperactivity in responsr to sns hyperactivity and probablt endorphin deficiency.

I'm not making this up. Read the first srudy I posted. Ill post the other studies when I'm at mt computer.

I have spent way too many hours and dollars to come to amy other conclusion at this point.

 

[xks201]

Honestly probably only suboxone would be a good indicator of opiate deficiency because in normal non endorphin deficient people it supposedly doesn't do much of anything. Ill be the guinea pig.

 

[Dufresne]

Are peripheral blood levels of beta-endorphin a good indicator of those in the CSF? Could it be that levels are low in the periphery because of the circulatory strain in our condition while more or less normal in the brain? It’s too bad this hasn’t been gauged during some of the CSF studies that have been done.

For the record, I’d be doing some sort of endorphin enhancement if it wasn’t for my exhausted vasoconstriction systems. My NE was low-normal some time ago and my ADH is currently 15 times what could be considered normal.

 

[heapsreal]

Tramadol is a drug that people either love it or hate it, but it can help improve energy possibly through its opiate effects but it also increases noradrenaline. SO could be a good med for those who have vasodilation issues with narcotics??

 

[Ema]

Tramadol is a drug that people either love it or hate it, but it can help improve energy possibly through its opiate effects but it also increases noradrenaline. SO could be a good med for those who have vasodilation issues with narcotics??

It had a nasty withdrawal for me though that was totally unexpected since I only had very mild symptoms when stopping other narcotic meds. It was pretty ugly.

 

[Tristen]

Tramadol is a drug that people either love it or hate it, but it can help improve energy possibly through its opiate effects but it also increases noradrenaline. SO could be a good med for those who have vasodilation issues with narcotics??

I get a bit of the same relief with Tramadol...but maybe only about 20% of that which I get with opioids like Hydrocodone. One could say that's better than nothing, especially since I get away from the narcotic issue......but for me the Tramadol also has some undesirable effects....maybe due to it's effects on hormones not affected by the opioids, ie noradrenaline and neurotransmitters, etc....I dunno, but the bad outweighs the good.