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Cannot Sleep Without Raw Beef: But Why?

Discussion in 'General Treatment' started by aaron_c, Jan 6, 2014.

  1. physicsstudent13

    physicsstudent13 Senior Member

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    that would be amazing if you found a cure for this terrible disease. sleep apnea is a serious disease and can have severe effects from low oxygen levels. klonopin acts allosterically on the GABA alpha receptor and helps my sleep apnea a lot, it took me years of going to doctors before one prescribed it to me. It definitely feels like it reduces central apnea events
     
  2. WoolPippi

    WoolPippi Senior Member

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    i slept through a second night. What a treat.

    Now it will be 3 nights before I get raw beef again.
     
  3. physicsstudent13

    physicsstudent13 Senior Member

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    by the way do you think raw beef helps sleep apnea then? I started eating it but there is a risk of toxoplasmosis. I'm only doing it because I have sleep apnea which is incurable and already have toxoplasmosis in latent form from eating bad meat it seems. My infectious disease doctor told me that it is ok and doesn't need to be treated.

    I've tried it for 2 days but it doesn't work, maybe it's not worth the risk
     
    Last edited: Mar 22, 2014
    Kathevans likes this.
  4. aaron_c

    aaron_c Senior Member

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    @physicsstudent13

    I am sorry to hear it hasn't been helping. Please let us know if anything changes. For myself, I feel it within a few hours....

    Just in case: How much have you been eating? I need to eat about 1/8 pound for it to work.

    @WoolPippi

    Wow, well it is super exciting to hear from someone else that this was helpful to. Huh...I see that you are progesterone deficient. Have you tried supplementing? I ask because I've wondered about it, but have avoided it because of insomnia from DHEA in the past.

    I hadn't put the MAO A together with sleep issues before...

    Cool! Let us know what happens after you go off the raw beef. I said it before, but it is so exciting to put these pieces together.
     
    Last edited: Mar 25, 2014
  5. WoolPippi

    WoolPippi Senior Member

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    reporting back: it helped 3 times. And then 4 times not :(
    The 3 times really are exceptional, I usually sleep through the night only once a month. So there must be something there and I will be pursue.

    about Progesterone:
    yes, I supplement, both oral and NPC cream. Only the bio-identical molecules (brand = Utrogestan), none of those birth control poisons.
    It helps my adrenals (Prog is converted to Cortisol).

    In the brain Progesterone is converted to Allopregnanolone, a very strong sedative, as strong as benzo's. I notice this when I take too much. Can't use it to cure insomnia though, it would numb the Progesteron receptors all throughout the body too much and make the estrogen-receptors too hungry.

    My working theory is that my CNS spends too much time in Fight or Flight and too little in the parasympathetic mode of Rest & Digest. High levels of excitatory neurotransmitters are either a cause (MAO A for example) or a consequence of this (lots of stressors incl. too low Progesterone).

    more on Progesterone:
    it helps brains heal from brain damage. This property is enhanced when combined with vit D supplementing. I've got science sources...somewhere... thank you google
    Progesterone is neuroprotective.
     
  6. WoolPippi

    WoolPippi Senior Member

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    me again. I think my methylation support is interfering with my sleep. I'm going to take a break from methylation and test more raw meat.

    here's a thread on insomnia because of B12

    and this thread offers lots of replies how mB12 and mFolate can mess up the system. I'm too vague today to understand what is written there but I do see some things that fit my pattern. For one thing: all my happy dopamine is gone when on too much methylation. (I only take 400 mcg from each mB12 and Metafolin)

    somewhere else it says one should balance all vitB. Perhaps raw meat helps level things.
     
  7. WoolPippi

    WoolPippi Senior Member

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    I'm wondering whether Tyramine may have something to do with it. It's an amino in most foods, especially cured or fermented foods. But nót in fresh beef.

    It's metabolized by MAO A (monoamine oxidase A). If it isn't, because you're taking blockers (=happy pills) or have a DNA thing going on (MAO A R297R for example), tyramine builds up in the system, releasing stored noradrenaline, adrenaline and dopamine.
    Just the things you don't want to have bouncing around your brain during sleep.

    Don't eat cured meat, pickles, cheese, chocolate or Teriyaki sauce and you may sleep through the night?
    Eat fresh beef instead and you might sleep?

    I keep coming back to those excitatory neurotransmitters. It think they rise too high in the middle of the night, in my brain. I can't figure out if that's because of a trigger (like sleep apneu or hypothyroisme. I know hyperinsulisme and hyperglycemia are triggers) of if that's because they don't get metabolized correctly (due to busted MOA A gene)

    I have found that keeping them, the neurotransmitters, low and level during the day keeps them from rising at night. For this I employ a Ketogenic diet, dustmite allergy precautions and amygdala soothing/training. But results are spotty.
    Perhaps beef and Tyramine come into play.
    Must say though: raw beef does upset my intestines at night. I need lots of chewing and HCL and still tummy hurts. Which is a trigger of noradrenaline.

    for the rest: off methylation now, taking Progesterone pill every evening and enough hydrocortisone to keep my body calm during the day. Still not sleeping through consistently. So tired of being tired...
     
  8. aaron_c

    aaron_c Senior Member

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    Hi @WoolPippi

    I know it's been a bit. How are you sleeping these days? Is anything new helping in particular?

    I'll keep an eye out for the tyramine thing...I do have MAO-A issues, so it could do it, but I haven't noticed problems with insomnia and summer sausage before. But there is always the chance that I didn't see it because I wasn't looking.

    For what it's worth, taking extra benfotiamine (active B-1, necessary to make stomach acid) has eliminated any feelings of "food is just sitting in my stomach" for me. It used to be really bad.

    And just to be thorough, I think zinc is needed to make stomach acid as well.

    Wishing you the best,

    Aaron
     
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  9. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @caledonia I wanted to ask you more about your central sleep apnea theory and if you are still having episodes of tachycardia waking you up while sleeping? This is how it all began for me in Jan 2013 (about nine mos after I had severe mono) and I was being woken up throughout the night with tachycardia as high as the 170's. I was diagnosed with IST (inappropriate sinus tachycardia) but at that time, the episodes were happening exclusively in my sleep.

    My cardiologist at the time (I have since switched) did not think it was related to sleep but I fought to have a sleep study. For me the episodes were intermittent and I also took a beta blocker during the sleep study (which I now regret) and the study did not capture anything but insomnia. I do not have acid reflux, as you mentioned, so I know that is not the cause.

    Did you ever figure out if you have central sleep apnea? This term was new to me with your post and my sleep study ruled out obstructive sleep apnea which I knew I did not have. My husband has this and wears a CPAP and his symptoms are completely different. Can CFS cause central sleep apnea? Why would the sleep doctor or cardiologist not know about this? I am not saying I have this but am just very curious from your post.
     
  10. caledonia

    caledonia

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    As I'm still on a very low dose of B12, I still get these episodes intermittently, but thankfully, they're in the mild range. If it gets bad enough, I can wake up feeling oxygen deprived and it takes of a couple hours of taking deep breaths to feel normal again.

    I haven't followed up on central sleep apnea or done another sleep study or anything, as I feel it's pointless. Plus Medicare won't pay for another sleep study.

    However, awhile back, I googled my symptoms and ran into a Yahoo group for catathrenia, which is not an exact match, but was the closest thing I could find. People with catathrenia stop breathing and then emit an embarrassing and loud groaning noise. I match the stopping breathing part, but not the groaning part.

    Catathrenia patients often report having worse symptoms during stressful periods (reading between the lines, when B vitamins are reduced due to stress).

    There are two people who have recovered from catathrenia. One was a fibromyalgia patient who took B12. She also fixed her fibro. Another is someone who switched to a completely organic diet, grassfed meat, lots of veggies, etc. If he goes off this diet, the catathrenia comes back.

    There is another lady on the group who is trying methylation treatment. So far she hasn't had improvement in her catathrenia. But I did catch a mistake she was making, which was only taking adenosylcobalamin and not hydroxy or methylcobalamin. That was only a few months ago, so we will have to see.

    I haven't been able to get anyone else in the group interested in trying methylation or even B12. Catathrenia isn't very well studied, and nobody can find treatment, (sound familiar?) so there isn't much help there.

    Your docs don't know about CFS and central sleep apnea because most docs don't know about ME or CFS. I would think they would be able to diagnose central sleep apnea though, regardless of your other diagnoses. I could be wrong, but I don't think there's really any treatment for it.

    If you were interested, you could do a search on here for central sleep apnea, breath holding, stopping breathing while sleeping, racing heart while sleeping, etc. Or make a new post doing an informal survey on the above. I think these type of symptoms are fairly common for ME/CFS patients.

    In my opinion, what it all boils down to is B vitamin (methylation) deficiencies causing dysregulation of the autonomic nervous system, the vagus nerve, etc. Methylation treatment should be helpful, as well as helping ME/CFS.

    As regular docs don't deal with vitamins, and methylation is a very new science, they're not going to figure it out - or at least not any time soon.
     
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  11. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @caledonia Thank you for all the info and I may PM you re: this subject if that is okay? I'd never heard of catathrenia before your post so I googled it and it doesn't seem to match my experience. My husband said that I move and talk in my sleep but do not make high pitched or loud groaning noises. It also seems that for people who have this, it happens every night which is also not the case for me.

    When this started for me, I would wake up from a dream (any dream, not a nightmare) with very high tachycardia up to the 170's. Back in Jan 2013, it was happening every night and then multiple times per night. I fought for the sleep study and then stupidly took the beta blocker so it did not capture anything. Then strangely enough the whole thing stopped where for months I no longer took the beta blocker nor had the episodes. Then the tachycardia came back more in the form of POTS (while I was awake) with rare episodes in my sleep. My cardiologist basically said it is all on the dysautonomia continuum and I now take Atenolol and Florinef.

    Your post was intriguing to me b/c it was the first time I had heard of central sleep apnea. This was not captured in my sleep study but do you think the beta blocker could have also masked that? Or would it be obvious no matter what? I also find it strange that after mono/EBV I would suddenly have central sleep apnea that did not exist before, but I guess anything is possible. I will do a site search of some terms here on PR to see what I can find.

    I do follow an organic/paleo diet now due to food sensitivity tests from my naturopath which I was not following at the time the episodes started.

    I do not take any B vitamins or Folate b/c I have not yet done any methylation or 23andme tests (but will be doing these soon.) From your experience/research, is there a specific type of B and Folate that I could start on my own (as a low dose) that would be helpful regardless of knowing if I am deficient in these vitamins?

    I doubt my insurance would pay for another sleep study (even though the other one was at least a year ago) and even if it did, I am not sure that it would show anything.

    Thank you so much for all the info, I really appreciate it.
     
  12. caledonia

    caledonia

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    @Gingergrrl43 Yes you can PM me. (Called a Conversation on here.)

    Would a beta blocker mask central sleep apnea - not sure. I was just thinking it would lower your heart rate.

    I would suggest holding off on folate and B12 supplementation until your tests come back. It's possible to make yourself worse by taking things incorrectly for your genes, so the testing will help head off some of that.

    Here's a link for central sleep apnea. It's looks like there are some treatments after all - http://www.nlm.nih.gov/medlineplus/ency/article/003997.htm
     
  13. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @caledonia thanks again for the info. The more I read I don't actually think I have central sleep apnea and my gut still thinks all my dysautonomia stuff is from the EBV virus messing up my entire system. But when I read your posts I was intrigued at another possible angle to pursue.
     

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