Unrefreshing sleep? Sick of sleep meds,consider this....

Discussion in 'Fibromyalgia Main Forum' started by deliarose, Mar 24, 2007.

  1. deliarose

    deliarose New Member

    I know this is a huge problem for most of us. No stage 3 adn 4 sleep, and consequently a lot of us have a "profound loss of HGH" or human growth hormone as Paul Cheney says.

    Well, Rich Van Konyenburg, an independent CFS researcher, has come up with a theory of CFS which explains the sleep problems.

    He had a very interesting explanation of it.. but it was buried at the bottom of another thread, so I thought I'd post it separately.

    Here it is, and his explanation is in the context of his overarching theory of a block in the methylation system which holds down glutathione production.

    (there's more on that on other threads)

    When there is a methylation cycle block, one of the many results is that the person can't make serotonin and melatonin properly, and that impacts sleep. In addition, there is a sleep apnea mechanism in CFS involving the low carbon dioxide production of the mitochondria (because of glutathione depletion), which causes the respiratory center in the brain to slow and shallow the breathing during sleep. This keeps tripping the low oxygen set point and rousing the person enough to get the breathing speeded up again. This happens over and over, so the person doesn't get into stages 3 and 4 sleep, which is where HGH is secreted most. So yes, there are lots of ways the methylation cycle block interferes with HGH secretion, in my opinion. It's another thing that will get fixed when the block is lifted.

    Hope that is helpful.
    Oh yes, and I got off my sleep meds of 7 years after starting this protocol.

  2. deliarose

    deliarose New Member

  3. PVLady

    PVLady New Member

    This is very interesting. I am sorry to say, I am not up to date on this information but I do have serious sleep problems.

    I am considering a sleep study. Have you had one yourself?

  4. StephieBee

    StephieBee New Member

    I know about the extremely low levels of HGH...I was told by my psychopharmachologist that I have that but unfortunatly im sure you know that HGH therapy can run up and over $500/$600 a month I believe, which of course is not paid for by insurance.

    One question I have is how do we get this block lifted in order to avhieve all of the necissary steps that it takes to obtain stage 3/4 sleep off of the sleep meds?

    Im just not farmiliar with the methyl block thing.

  5. deliarose

    deliarose New Member

    I had 2 sleep studies. They showed alpha intrusion and a lack of stage 3 and 4 sleep.

    I was Rx'ed trazodone, and clonazepam. They put me out, but I never got refreshing sleep.

    And just fyi, I was using my sleep meds in the 2nd of those studies.

    I don't know if people realise but no sleep med (except Xyrem) will give you stage 3 and 4 sleep.

    I even tried Xyrem. I had a horrible experience. I posted about it.

    Anyway, everything seems to be coming together on this methylation/glutathione protocol, presumably because it gets at the root cause of the problem, as Rich Van Konyenburg says.

    I'm going to bump a post that sets out the theory and post an excerpt here.

  6. deliarose

    deliarose New Member

    explanation of methylation/glutathione protocol.

    It's kind of long and a bit technical. But I am trying the short form of the program, and I am zooming out of CFS land.

    Full disclosure: I had been doing transfer factor and tons of supplements esp. Vit D, for 6-10 months, so I wasn't starting from zero. I had made a lot of progress already.

    Anyway, several other people have joined me. Some of them seem to think it's helping. If you do nothing else, at least monitor the methylation experiences thread to see if this protocol is in fact helping others.

  7. deliarose

    deliarose New Member

    here's the list of supplements that are recommended for the short form of the protocol:

    The simplified approach would involve giving the following oral supplements daily, all of which are available from Dr. Yasko’s supplement website at http://www.holisticheal.com:

    ¼ tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

    ¼ tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, aka folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)

    (up to) 2 tablets (It’s best to start with ¼ tablet and work up as tolerated) Complete vitamin and ultra-antioxidant from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

    1 softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)

    1 sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

    1 capsule SAMe (200 mg S-adenosylmethionine)

    1/3 dropper, 2X/day Methylation Support Nutriswitch Formula (This is an RNA mixture designed to help the methylation cycle. It is not essential, but is reported to be helpful.)

    I am using most of these except the last one. I may add that later. You can get some of this stuff anywhere. I got some of the stuff off Amazon.

  8. deliarose

    deliarose New Member

    this protocol is for CFS. Dunno if u ladies have CFS or fibro?

    Rich Van Konyenburg says he hasn't studied fibro and doesn't know if it will work for fibro.

    If u have CFS and fibro, it should help.

    We are fortunate enought to have Rich on the board. He has been answering questions on the methylation posts.

    Sorry if I sound evangelical. It's because I feel evangelical. When you find something that works you want to share it...(before u get well and then just disappear).

    It's definitely put me over the top. I feel like I'm in theh home straight. But we're all different...

  9. Daisys

    Daisys Member

    As you may remember, I'm sleeping well with xyrem--no side effects. But, I would love to have my own natural sleep, along with some ENERGY. I've been following the posts about this and will be ordering it.

    I was holding off because I have a new doctor now who believes I have lyme's disease, and we're waiting for test results now. I'm also being tested for heavy metal levels. But I doubt if it muddies the water too much if I get started on that now. I won't be getting treated for anything else for a couple weeks or more.

    I appreciate you're sharing your progress. I hope you soon get too busy with real life to spend much time here--that's my plan! :)
  10. deliarose

    deliarose New Member

    Glad to hear you are making headway with your health, and thrilled to hear that you will be trying this approach.

    As you probably know from reading the methylation threads, there is some payback in terms of additional fatigue/sleeping and .. if you overdo the supplements....some nausea.

    But I think it can all be managed by going slowly, using the doses recommended. and maybe adding in some glutathione to mop up the released toxins.

    But I've only been doing it a month, and my brain function has improved so much. It's phenomenal.

    Those stupid doctors gave me every drug under the sun. Adderal, Provigil, Strattera, and on and on... and all I had to do the whole time was detox my brain by getting my folate and methylation systems going.

    I could choke them for their ignorance!
    Ah well, onwards and upwards. My husband has threatened to block this site on our computer cos I spend too much time on here.

    One other thing: you might want to ask Rich Van K if raising glutathione would help kill off the Lyme. I know raising glutathione should help suppress viruses.. among other things.

    Also, it might not be my place to say this, but pls make sure you get an accurate diagnois of Lyme.

    It's just that one story sticks in my head.. the lady who went to an FFC and was misdiagnosed with Lyme and got v. sick from the treatment.

    Pls don't take that the wrong way. I think it's very important to get diagnosed. It's just I think Lyme can be tricky.

    Wishing you the best Daisy. Hope we can both put this behind us and move on with our lives! Yea.

  11. Daisys

    Daisys Member

    The doctor I'm going to seems to be experienced with this. He's been working with CFS viruses for awhile now.

    I don't want to give out his name yet, because I've only been there once myself.

    Thanks for the head's up--I'll be aware of that while discussing this with him.

    Since going on xyrem, I've gone from sleep-deprived stupor to clear headed. All my other symptoms lessened, and I was close to declaring myself in remission. Then I had a relapse that was unlike the 20 years before, with a different kind of pain. It's that burning type of pain that the doctor says sounds like lyme. So, I'm wondering if I just got it a year or so ago.

    It doesn't look like the methylation blockage treatment could be seriously dangerous, so I'm going to give it a shot. Maybe by this time next month, I'll be singing your song--hope so!

  12. deliarose

    deliarose New Member

    I've learned the hard way that you can't assume your doc knows best. A second opinion can be a v. useful thing.

    And I think fixing the sleep is crucial. A lot of other dominoes fall once that happens.

    I think that is a big part of my progress on this program. I yakk up the cognitive improvements cos that is the most important thing to me.. but I think I'm improving on a lot of levels and a lot of it is down to better sleep.

    Glad to hear you're doing well.

  13. deliarose

    deliarose New Member

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