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Brain damage/dysfunction and substances that give near remission

Discussion in 'General ME/CFS Discussion' started by knackers323, Nov 12, 2013.

  1. knackers323

    knackers323 Senior Member

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    Does anyone know if anyone is looking into brain or nervous system damage as a cause of our illness?

    I ask this as I have heard of a few people that have taken DMT and their symptoms completely disappeared for a few hours.

    I have also heard of a PWCFS take suboxone and it had the same effect. Desperate to feel well I had a very small amount of suboxone and the crushing fatigue completely went away. The next few hours were absolute heaven.

    My body felt 100% and I was able to do push-ups. This would normally be completely out of the question. I was left with no PEM symptoms. This normally would have left me bed bound for a week.

    So I wonder if it actually something in the brain that is driving the fatigue symptoms at least.

    Anyone have any similar experiences, thoughts on this or know of any research into this?
     
    Last edited: Nov 12, 2013
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  2. chronix

    chronix

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    Hmmm..I know Baraniuk did scans of the brains of GWI patients and found abnormalities in the nerves, or something to that extent.

    A common finding in CFS is reduced blood flow in the brain. Also UBO's - unidentified bright objects on MRI's.

    Not sure if these findings are a cause or effect of the illness. But there's definitely brain and CNS involvement.

    Not sure what DMT is - is that a drug? I'll be wary of taking anything that seems to give complete but temporary relief - judging by what some have said on this forum these drugs/supplements usually leave you off worse.
     
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Wasn´t DMT something to activate the spiritual eyes and have profound experiences etc? Does that have anything to do with the physical brain? I am not surprised it vanished their symptoms temporally, because it creates altered states of consciousness where physical illness is put aside. But if you are still ill after consuming then...

    Suboxone is just a drug used for heroine addicts, it actually works similarly to heroine so one would expect getting a high. That is not for brain damage but is interesting how much it helped you.

    Edit: I would stay away from that shit. In the junkie forums (they get together to talk about drugs, for real, what a fucking waste of people) there is a consensus that it permanently numbs down your opioid receptors. That means in lay terms that feeling pleasure is harder after taking that drug for a while.
     
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  4. searcher

    searcher

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    Dr Natelson has done a lot of research looking into CFS as a neurological issue. He is a neurologist at Beth Israel at NY. One of this current research studies is called "A Brain Problem is the Cause of CFS for some Patients" and is being done in conjunction with Cornell. You can find out more about it at http://painandfatigue.com/new_research_studies.html#CFS01

    In preliminary studies he found high levels of lactate and glutamate and low levels of glutathione in brains of a subset of people with CFS. My guess is that those drugs are working on different pathways though but could lead to temporary relief.
     
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  5. knackers323

    knackers323 Senior Member

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    Thanks for the Natelson info, sounds interesting.

    Yes the suboxone is obviously not a long term answer. The thing is I had such a small amount and I didn't really feel high off it so i wonder if it was doing something else that made me feel better. It's just that I felt normal like I didn't have cfs anymore. And that felt so damned good. I had forgotten how good it feels to be normal and not dragging your arse around all the time.

    Yes dmt is a drug from a plant in South America that is used for healing. They actually run healing tours over there now for this purpose and has become pretty popular apparently.
     
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  6. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I plan to try Ayahuasca and Wachuma/San Pedro one day. These also have DMT and/or do similar things. I know they can help you go inside of yourself and, get spiritual insights and sometimes they give people health back.

    Theorically the suboxone gave you a high,that would explain why you felt normal. Remember, healthy people exist in a state of bliss that is not actually fully graspable until you lose it.

    http://www.suboxone.com/hcp/about_suboxone/mechanism_of_action.aspx
     
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  7. searcher

    searcher

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    I have a different perspective from Beyond in that I think that discussion on drug forums can be really interesting even though I don't really do drugs. Of course some people are just doing drugs purely for recreation (usually alcohol falls into this bucket) but often times people are trying to figure out how to use drugs to reduce certain symptoms or to increase awareness. Obviously a lot of discussion on PR is about how to use drugs/supplements to reduce symptoms.

    http://flyagarictincture.blogspot.com is an interested blog about using fly agaric to reduce symptoms. The author has chronic lyme and said it helped her a lot with increasing energy levels and mental clarity. It is risky though in that you have to be very careful with dosage. According to the author you can get it as a tincture in Germany but I don't know about other countries.
     
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  8. Gloria H

    Gloria H

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    Last edited: Nov 12, 2013
  9. knackers323

    knackers323 Senior Member

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    Nope dmt the psychoactive that comes from the ayahuasca plant
     
  10. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    @searcher Nah these people I found were just drug addicts, talking about getting a good hit etc. I for one like to experiment with my body but having been into groups of young people that used alcohol and hashish/marihuana to fill their empty lifes and gatherings I am naturally repulsed by the so called "recreational" use of drugs. Not to mention these people are doing the opposite of us, they are actively creating illness.

    So that pisses me off, these people trashing their health while I have to live like in a bubble. Perhaps I am just envious that they are able to do it. Defintely I am envious lol but I wouldn´t live unhealthily even if I cured completely.

    And I find interesting every single thread of these junkies, mainly because when I find one of them I am looking to something related to my problems.
     
    Last edited: Nov 12, 2013
  11. knackers323

    knackers323 Senior Member

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    Do they say the permanent numbing of the receptors is true for all opiates or just the suboxone?
     
  12. Hip

    Hip Senior Member

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    @knackers323
    If you read this post HERE, you see that @Tristen says he also feels huge improvements from taking suboxone.

    On that same thread, you see that many ME/CFS patients have found that drugs which act at the opioid receptors can bring substantial relief from ME/CFS symptoms.

    If we knew why this happened, I think it would throw a lot of light on the biochemistry of ME/CFS, and might even lead to an effective treatment. I wish researchers would look into this opioid receptor – ME/CFS connection.
     
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  13. Aerose91

    Aerose91 Senior Member

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    LDN works on opioid receptors, so the doctors are working with some sort of connection.

    I'm not familiar with sunk one in any way but I heard a story of someone who took a rec. drug and developed depersonalization and anxiety for 4 years because of it. He tried suboxone and it cured him completely.... and permenantly.

    I'm not saying we should be experimenting with drugs but there is obviously some validity to some people having particular reactions. Percocet is a huge and dangerous rec. drug if used for the hell of it but for people after surgery it's a huge benefit.
     
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  14. knackers323

    knackers323 Senior Member

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    Does ldn work the same way? As in if you felt an improvement from suboxone or another opiate should you in theory see benifit from ldn?

    Or is the reverse true?
     
  15. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    Just the suboxone, @knackers323 Basically a lot of them stated that they never got the same euphoria from drugs anymore since using it.

    I found two studies on opioid receptors, but they used Naloxone. Very interesting nonetheless. A study with Suboxone would be optimal because they would find why it brings complete relief to some people.

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-3083.1989.tb01183.x/abstract

    http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=25627
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think there are many causes of fatigue even within the one person, this is why i think sometimes something will work and the next day it doesnt:(

    Its very debatable if neurological symptoms are occurring due to structures being broken or not. Many people report feeling 100% normal lasting from hours to days to weeks, so maybe in a percentage of cfsers these issues arent from something being broken in the brain, its possible that outside issues are causing the neurological issues.

    One example of something that can cause the fatigue and neurological issues is the actual immune system even if an active infection is going on. eg Many people feel terrible from the flu not just because of the flu virus itself but from the cytokines being produced from the immune system trying to fight the infection. I think this is why some people can feel better on high dose prednisone or maybe one of the newer autoimmune/anti inflammatory drugs like the tnf blocker enbrel. But its only treating apart of whats causing the fatigue which is the immune system itself, now if someone has an active infection then using these drugs to turn down the effects of the immune system can allow infections to thrive as we now dont have our immune system fighting the infection.

    Dammed if we do and dammed if we dont sometimes.
     
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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    opioids and or the effects of LDN may work through its NMDA antagonism and can maybe stop that tired but wired feeling and calm down an over excited HPA axis???

    Just been reading about NMDA antagonists when i saw that it mentioned opiods have NMDA antagonist properties. I guess its a possiblity or part of??
     
  18. Aerose91

    Aerose91 Senior Member

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    I'm honestly not too sure about how suboxone works so I can't say how it relates to LDN. I would think there would be a similar mechanism of action tho if they both work on opioid receptors, however I seem to see more drastic results from suboxone than LDN.

    I've been taking LDN for a couple months now but haven't seen any improvement from it, maybe it will take a few more months.

    My neuroendocrinologist told me that all fatigue is caused by inflammation. The question becomes is inflammation out of control and if so, what's causing it. So cytokines would be a great place to start to find out where the problem lays
     
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  19. Tristen

    Tristen Senior Member

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    I know a few people on Suboxone therapy for addiction/withdrawl issues, and they all say that it's only the first few days that they feel high. After that they feel nothing but an absence of withdrawl. Since Suboxone does alleviate much of my me/cfs symptoms, it's seems a good idea. The trick is getting it prescribed.

    I suspect the reason we don't hear more about the effect use of opioids for me/cfs is that the docs and researchers who work with us just haven't gotten these reports from enough of us. I have 2 me/cfs docs and plan to discuss this with them soon . Seems very diagnostic to me.

    I'm still hopeful to find a non narcotic drug that will produce the same effects.
     
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  20. Hip

    Hip Senior Member

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    Yes, on this post I made here you can see that opioid drugs affect levels of the pro-inflammatory cytokine IL-6.

    This study says IL-6 is linked to cognitive dysfunction (aka brain fog).
     
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