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Psychosis?

Discussion in 'General ME/CFS Discussion' started by Aerose91, Dec 13, 2013.

  1. alex3619

    alex3619 Senior Member

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    In cases of ME or CFS or probably Lyme there are cognitive issues. This is not a psychotic problem, its about low blood flow and low metabolism in the brain, with possibly neurological or immunological issues as well. Many of these patients have areas of the brain that are almost switched off. We interpret that sometimes as having a hole in the way we can thing ... some things are not there any more. This is usually completely reversible in theory, but in practice is very hard to do.
    rosie26 likes this.
  2. golden

    golden Senior Member

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    ^^ i agree with this.

    Golden.
  3. Aerose91

    Aerose91 Senior Member

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    I think I agree with this as well and even asked Dr Enlander about it. The dage is potentially reversible, we just don't know how to reverse it mostly because we don't understand the pathology of the disease. It is really baffling to me how something can cause a constant lack of blood supply to the same parts of your brain for an endless amount of time. Mitochondria damage in the brain cells?
  4. Aerose91

    Aerose91 Senior Member

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    Thank you for posting this, it was a nice breath of fresh air. There seems to be a high amount of negativity on this website regarding potential for improvement and it's nice to read stuff like this.
    golden likes this.
  5. Martial

    Martial Senior Member

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    and on another note you areot
    DP is much, much better, only slightly bad right now due to sleep deprivation and the like... haha okay man I feel whats going on... I do not go into this much but it feels like it applies so I will, I hope you have an open mind though.

    The No thing ness you are talking about is very much reality and sounds like whatever challenges you went through opened a spiritual awakening... This is not super esoteric or anything of the like either. It is simply an opening that is to the source of reality. There is the no thing ness, which appears as there is no "out there" nothing is separate from you, you also probably completely lack a false sense of little "me" or self image right? Its not like a visual thing per say but a very deep feeling and recognition from a much deeper place right? Like everything seems empty of substance and maybe a sense of being in the complete darkness? There is two sides to the coin so to speak the no thing ness which initially is extremely terrifying and daunting like someone pushed you off a cliff of nothingness and literally you are completely naked in the unknown with no reference to anything... Without any background in spirituality or teaching this can be incredibly scary and disorientating... What I can tell you is that it is unlikely you will ever return to a place of seeing in separation or from mental sense of "me" viewpoint... Basically your conditioning and the glasses of perception that you had on life have been removed. Its a complete falling away of the realm of Belief.. However you haven't come into full realization of the everything ness which is the other side of the same coin, which means viewing as source or existence perceiving itself. That is viewing in one ness and the by products are an incredible sense of well being and peace.. De personalization is extremely common as a defense trigger because of all of this, its literally a death of ego after all..


    What I suggest as a remedy for you is do not run back to the old ways of thinking and structure because it will not be there, and depending on how deep you are you will not find a "sense" of self either.. Contemplate and bring your attention on the everything ness instead of the no thing ness, just try and see if you can perceive it and feel it within yourself and surrounding environment. I know this is all really scary and disorientating because I went through it too, I just don't usually talk about it unless I feel called too..

    I highly suggest you check out the book Way of Liberation by Adyashanti heres a link to it
    http://www.adyashanti.org/wayofliberation/

    Here is some youtube videos that help for reference as well!
    Adya on reality

    and heres some audio links of his book The end of your world.

    http://www.youtube.com/results?search_query=adyashanti end of your world&sm=1

    Also check out some other teachers like Eckhart Tolle, Mooji, and this interview with one of my teachers at http://batgap.com/ellie-roozdar/ There are two separate interviews and the site has plenty of other people on there as well..

    The funny thing about all you are mentioning is that you don't need to believe what I am saying or even like or dislike it, it simply is talking directly to your reality of experience right now, and how to fully stabilize a place of true perception and unity within yourself. I am sure the illness is also cleansing out your energetic system and will clear up with full embodiment of truth. I hope this all finds you well friend and I wish you the very best! God bless your heart!

    On a side note I was never officially diagnosed with ME/CFS, Not sure if i even have it just been having very strong fatigue due to a sinus infection with symptoms that could match CFS... Time will tell if I do or not, though I am not enlightened as of now and maybe whatever I have is also clearing out my system... I have been very involved with spirituality long before getting sick.

    I don't feel that your perception and experience is related too much to the brain stuff, this goes much beyond normal organic chemistry. At least from what you mention as if this is the main thing going on.

    Also once you really stabalize this life will be better then ever before, in fact more then you could ever possibly imagine! Just have trust in this experience and let yourself give in to it fully... Trust the unknown and just relax, It will definitely take care of itself and you have plenty of teachers and tools to use as an opening to grace, as I have shown you.
    Last edited: Dec 15, 2013
  6. xchocoholic

    xchocoholic Senior Member

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    If it's low blood flow the feeling should disappear after laying down. It takes me an hour to completely recover.

    If laying down doesn't resolve the problem I'd look at diet for toxins. LLMDs are recommending this too.
    Brains can heal sometimes but results will vary. Brain foods are important.

    Mine improved dramatically post diet change. Then I made the mistake of taking sleep aids for years. duh. It will be nice when the medical community gets a handle on this kind of information. tc ... x
  7. xchocoholic

    xchocoholic Senior Member

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    @Aerose91

    I'm not sure why you see so much negativity here. I see the opposite.

    We're a realistic group tho. Many of us have been trying
    various protocols for years.

    Maybe you're picking up on the fact that while many of us have improved we're not living full lives. Being chronically ill keeps us from part of normal society. Coming here and talking to other pwcs helps us cope with our limitations.

    tc ... x
    SOC likes this.
  8. Aerose91

    Aerose91 Senior Member

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    It doesn't shift at all when laying down. It doesn't shift at all ever, it just steadily gets worse no matter what I do.

    My diet is impeccable and has been for years before I even got this. I sleep enough , etc.. So I can't know what's really causing this- all I know is that my brain is the #1 target. Every time I have a PEM episode it effects my brain permenantly and severely- I get further from reality and deeper into psychosis.

    I kind of hope it's Lyme or something like that because it would then be more treatable than viral ME. We'll see tho.

    @xchocoholic

    I know there is a fine line between negativity and realism. I know the reality of this disease isn't a good one, but one thing I commonly see here is if someone recovered or tells a story of recovery then people say they must not have had true ME/CFS. I think it's nice when someone tells a recovery story that can offer some hope in an otherwise dismal situation. But don't get me wrong, I hope more than anything that I will heal from this but I also understand the reality of my situation and am trying to dig my heels in and get used to the long haul
  9. xchocoholic

    xchocoholic Senior Member

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    I'm not sure what you're eating when you say your diet is impeccable. Most functional or integrative doctors I know of are currently recommending a paleo type diet. aka whole foods, no grains, dyes, hormones, etc.

    I've seen how pwcs who haven't recovered are perceived as not trying hard enough. So as a pwc going on 24 years of me/cfs I want others to know that sometimes pwcs can heal and sometimes we can't. Until we get a stop using me/cfs as an umbrella term we won't know who can heal or how.

    fwiw when i first came to a cfs message board everyone told me i was a celiac and didn't have cfs. That made me hope I'd recover simply by eliminating gluten. That didn't work out. I've met quite a few people who thought going gf was the answer but ended up needing a paleo type diet just to feel a little better.

    I realize that diet alone can't always heal our broken

    bodies tho. Other factors come into play.

    tc .. x
  10. xchocoholic

    xchocoholic Senior Member

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    I hope you get this figured out.

    Maybe an integrative or functional doctor could help.

    tc ... x
  11. Aerose91

    Aerose91 Senior Member

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    In terms of diet, I'm a nutritionist and personal trainer, so health has been my top priority for a long time. For about 10 years my diet has been as such;

    no histamine foods at all (that means no dairy, gluten, nuts, eggs, soy, corn). Also, I keep a checklist of foods that have a generally high histamine level in them and track my reactions to them- for example avocado, spinach and any fermented foods- I have a list of about 30.

    I hand make my own coconut water kefir because I have experimented with all probiotics and this one is best for me.

    I hand make my own organic bone broth (beef or chicken) weekly and drink 2-3 cups daily. This is great for gut health as well as providing trace minerals and nutrients.

    I juice

    I use the discards from juicing (the fiber and roughage) to bake into gluten free things- such as muffins and such.

    My blood type is A positive so I eat according to that- 50-70% vegetables each meal with less red meat because it's harder for someone with low stomach acid like myself to digest.

    I drink lemon and apple cider vinaegar daily

    I eat organ meats (liver and heart mostly) to make up for this.

    I eat fish no more than twice a week because of the high mercury content. But I make up for this by eating sardines (smaller fish carry less mercury) and flax

    I check my pH almost daily

    My sugar intake is zero- only being untrue if I have a slice of apple or a few blueberries.

    Zero caffeine, alcohol or drugs/cigarettes.

    I'm 29 years old and before getting sick was in optimal shape and had just released a fitness video along with various nutritional consultations.

    So I can't really say that my diet is inhibiting me. I have had this diet long before I got ME and have kept it the whole time yet I continue to decline.

    On top of that all of my blood work (vit b levels, ferritin etc..) have come back perfect. The doctors have no idea why I got encephalits and subsequently ME, nor do they understand why my brain and conciousness has been so severely effected. I almost WISH I had a crappy diet leading up to this so I would have something to change in hopes of recovery. But nonetheless, I'm at a loss.
    xchocoholic likes this.
  12. Martial

    Martial Senior Member

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    Did you check out my response post yet? I had mentioned something as to why you are experiencing what you are. let me know what you think..
  13. GypsyA

    GypsyA

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    Wow, I can totally relate! *HUGS* to you.

    I, too, was exceptionally healthy and living an incredibly vibrant/healthy/happy lifestyle before becoming unwell...and then it was a fast and downward spiral that seems to still be spinning ever more downward. I, too, ended up with encephalopathy and a sort of psychosis. For me, it all happened after being bitten by a tick...perfectly healthy before that. I had the same thing...traveling and helping others learn about healthy living and healthy diet before becoming unwell. I also voiced/thought that if I had eaten a crappy diet for years before becoming unwell, that a healthy diet could have healed me. Already having a healthy diet and becoming unwell seems to have been what made it harder for me to recover. I bet you were super bright, intelligent, happy before this and now you feel your attention and intelligence fading. :-( I'm also Type A (negative).

    I have not given up hope, though. You've found a fantastic forum here and I'm sure you're going to be coming back often. This place has a lot of intelligent people sharing/caring/experimenting with their own health and collectively we are all learning from each other. So, keep coming back and I know you'll be one day sharing and helping others learn from what you've been trying and succeeding with, as well.

    Best wishes to you and definitely keep sharing and coming here for support as often as you can. *MORE HUGS*

    Love,

    Wendi
    XOXOXO
    Sushi and Kina like this.
  14. xchocoholic

    xchocoholic Senior Member

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    I have the dq2 gene and was eating gluten so many of my symptoms came from that. I realize certain people can heal by eliminating that sort of exposure but not all of us do. Many celiacs I know have to avoid multiple foods.

    You didn't say if you were eating strictly whole foods. Dr Terry Wahls explains why.

    I'm aware that there are probably other factors in your condition but from what I've seen inflammation from diet
    can interfere with our body's ability to heal itself.

    Good luck. X
  15. stridor

    stridor Senior Member

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    I was not floridly psychotic. I did hear voices twice and I had some strong paranoid thinking but perhaps not delusions.
    That is part of my personal history. Dealing with mercury toxicity and methylation has retired my so-called "Brittle Rapid-Cycling Bipolar II - Mixed States".

    It appears that I was Mad-as-a-Hatter.
    I also have CCSVI (Chronic Cerebrospinal Venous Insufficiency). This is where I have blood going the wrong way in the veins of my neck, like many with MS have.
    It has been proposed that almost all of us with ME will have this and I am surprised that no one talks about it here.

    So yes, I have multiple issues that could affect my mental health. While each of us is different, recovery from mental illness is a reality for some of us. I did it all with the help of Dr. Google and through the kindness of strangers.
  16. Aerose91

    Aerose91 Senior Member

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    @Martial
    Sorry I didn't write back sooner, my brain has been declining more lately and I completely forgot I posted here.

    I'm not against talking about spiritual awakening stuff as it's talked about frequently in DP discussions- I've read all the "ego death" stuff. You explain it very well and I see your point. However, I don't know if I can fully relate to it for a few reasons:
    One, the psychosis and false reality I am in (yes it's more than just disconnected from reality- it's a feeling on being settled in an alternate reality) came on after two massive PEM episodes. Whenever I overexert my brain is probably 95% of the effected part. Only recently after 9 months of sickness has the crushing fatigue begun to come on.

    I am so far separated from reality and feeling now that I can not even conceptualize reality. Not because it's been a long time- it's only been 9 months- but because so much of my brain is down. I don't ben get upset about it anymore because I can't feel what I'm missing- it's like it never existed. Me missing reality and my "being" is akin to my asking you if you miss living on Mars. Do you miss it? Would u want to go back?

    There would be no anxiety or sadness from you because you've never been to Mars so you don't know what your missing. That's how I am 24/7. I have no recollection of what reality feels like so I can't tell what I'm missing. It's so bad that everything feels so simple now yet I know there are tons of layers of complexity to my existence that I can't tune into. I know this because I have felt them before.

    I can't feel time. Not- I have poor conception of time- I can't FEEL time. It is merely a concept to me. I can not feel the difference between days because I am so far from time and existence that it has no effect on me. Noon feels the same as 4 am.

    Again, all of these things came after episodes of PEM so I know they are of physical cause and my SPECT confirms it. However, as I have seen from many others with ME, overexertion tends to cause permanent disease progression and make the disease lifelong. I have made zero progress from these PEM episodes. As much as I really want to hope and pray there's a chance for me I feel like reality is something I very well may never feel again, unless they discover some miracle cure for ME that is.
  17. Aerose91

    Aerose91 Senior Member

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    @Martial

    I'm not trying to come off as a total pessimist, I know it sounds like that. It's just that I'm SO bad and I'm already on almost all of the treatments that are supposed to help this disease with no avail- Valcyte, LDN, Hepapressin, glutathione, metal detoxing, sick diet etc.. I even work with a therapist who specializes in DP. None of those showing any effect so far really doesn't give me much hope considering how far I have to go. At 29 it's pretty damn hard to picture living the rest of my life like this. If I were to even make an 80% recovery, which I know it's nearly impossible, I would still be in absolute misery. That's how bad my brain is.

    Where in Cali are you? I was in Hermosa Beach for 8 years and loved every minute of it. I just recently had to move back to Connecticut to live with my parents. I'm missing SoCal
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Aerose91

    Don't forget the possibility of a pathogen such as Borrelia or Bartonella. Many of your symptoms are classic for them, especially Bartonella.

    Best,
    Sushi
  19. Aerose91

    Aerose91 Senior Member

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    Yes I definitely am pursuing that. I have emailed a couple Lyme groups who can refers to a doctor and asked someone I know with Lyme (not nearly cfs level) about his doctor. Hopefully I can get the wheels turning on this asap. I know time is a big factor
  20. Martial

    Martial Senior Member

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    I did not mean to imply you will live like this forever, I meant to say that some of the things you mentioned sound like a peering into the state of no self.. Enlightenment is not the No thing ness alone, its just a phase that someone can go through like saint john of the cross, or mother theresa.. And with a good teaching or teacher you can better move into a place of truth and get out of the dark night of the soul that you seem to be experiencing... I live in ventura about 30 minutes north of Los Angelas... Hermosa is bad ass dude! If you are ever in Cali again be sure to let me know!

    On another note I know that in time that you will 100% recover... I can just tell man, just keep at it and don't give up.. Its a feeling from my gut.. You werent put here to live like this forever, its grace.. And healing is absolutely and completely possible!

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