What to do?

Discussion in 'Fibromyalgia Main Forum' started by EllyJune, Sep 6, 2011.

  1. EllyJune

    EllyJune New Member

    I’m so glad I found this forum. I am from Belgium where we know nothing about CFS, and doctors who do research and find something, are not accepted. And thus diagnosis and treatment is the same as 10 years back...

    I am looking for help because here in Belgium there is none. Just regular psychiatry and psychology, but nothing is done on a bio-fysical level!!

    I hear people here talking about getting tested on TSH, human growth hormone, and cortisol and wish to know more, because I am SURE I am suffering from adrenal fatigue, and am heading towards CFS. I get muscle pain and swollen glands and the psychiatrist I work with in the hospital whishes to put me on a behavioural therapy-program where I have to get out of bed everytime I can’t sleep… Imagine!

    We do have one excellent Belgian doctor who acknowledges that depression, CFS and ME are all inflammatory diseases caused by imbalances in the brain and omega-3 levels. I believe this is true but he is that much counteracted by his conventional colleagues that he moved to Thailand to put up a clinic and program according to his scientific findings. As you can well understand, I’m not in the financial or physical position to go to Thailand to get treatment….

    So we in Belgium, are left to our own devices, with doctors who believe CFS can not be treated and should only be supported by therapy which is oriented towards progressive activation and acceptance. I am not yet there. I think I can turn this (whatever is going on in my body) around with the right methods, supplements, etc… only I seem to be the odd one out here.

    What is a neuropath?? Where do you get all these stress hormones and things tested?? How?

    The neurologist in the hospital did a sleeptest, said my REM-sleep is out of control (multiple awakenings) due to depression and told me to get therapy, whereas I’m reading on the net that cortisol can disrupt REM-sleep just the same and can be treated with pshosphorylated serine (if I got it right).

    Can anyone give me any advice as to what I should do, which tests I should ask for, where I can go or get this kind of alternative treatments?

    I have been suffering from extreme insomnia and exhaustion for a year now and on top of it, I have to figure it all out by myself...

  2. Mikie

    Mikie Moderator

    I'm glad you found us too. I'm so sorry you do not have access to docs who are knowledgable in our illnesses. Dispite all the research, unfortunately, no one knows for sure what causes our illnesses nor how to cure them. So, even here, it is pretty much up to us to do our own research so we can work with a willing doc. This website is so valuable because so many here are knowledgable and are willing to share generously. We are not docs but we can and do share what we've learned.

    There is a methylation protocol which uses phosphotidyl serine, along with folinic acid, to help our methylation system to work better. RichVanK is a researcher and he has posted this here. I'll see whether I can find his simplified protocol. I'm not suggesting everyone use it but it has helped me.

    We have a large library here at this site with lots of info and you can research online. I don't know whether you are allowed to order supps from outside your country but the store here has very high quality products and they are very well priced.

    I'll see if I can find the methylation protocol post.

    Again, welcome to our site.

    Love, Mikie
    [This Message was Edited on 09/07/2011]
    [This Message was Edited on 09/07/2011]
  3. Mikie

    Mikie Moderator

    On the simplifed methylation protocol:

    3/30/11 12:03 PM Simplified Methylation Protocol Revised as of Today


    As of today, I am suggesting a revised form of the Simplified Treatment Approach for lifting the partial methylation cycle block i ME/CFS. The revised form is shown below.

    The changes involve using liquid supplements where possible, and a capsule rather than a tablet, so that dosages can be divided more easily. Hopefully this will be more convenient than having to split tablets.

    I've eliminated folic acid from the protocol in favor of the active, reduced forms of folate, exclusively, since folic acid is not readily utilized by some patients, and it competes with the active forms for absorption.

    I've also provided for use of lecithin in place of phosphatidylserine complex, because the latter can decrease cortisol in patients whose
    cortisol is already too low.

    I would appreciate any feedback on how this works out for those of you who decide to try it.

    Best regards,


    March 30. 2011

    IN CHRONIC FATIGUE SYNDROME—March 30, 2011 Revision
    Rich Van Konynenburg. Ph.D.
    (Based on the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])


    1. General Vitamin Neurological Health Formula [2]: Start with ¼ tablet and increase dosage as tolerated to 2 tablets daily
    2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
    3. MethylMate B [4]: 3 drops under the tongue daily
    4. Folinic acid [5]: ¼ capsule daily
    5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

    The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
    Phosphatidyl serine can lower cortisol levels. Patients who already have lower than normal cortisol may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

    [1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, .
    [2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
    [4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
    [5] Folinic acid is 5-formyltetrahydrofolate. ¼ capsule is a dosage of 200 mcg.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
    [7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.

  4. misskoji

    misskoji Member

    I just wanted to echo Mikie and say, welcome to our wonderful community.

    If you are interested in the Methylation protocol, ProHealth now offers the products suggested by Rich VanK et. all
    You can find it here:


    Wishing you the best in your healing journey.

  5. Mikie

    Mikie Moderator

    I'm glad PH is now offering all the components of the protocol. I just reordered my phosphatidyl serine from the store here. Makes it easier if one can get everything from one source.

    Love, Mikie
  6. EllyJune

    EllyJune New Member


    how can I find out if there's something wrong with my methylation process?

    I don't quite understand the link between phosphorylated serine (what's the difference with pshopshatidyl serine?) which has something to do with cortisol and adrenaline, and the methylation process.
  7. Mikie

    Mikie Moderator

    If you post to RichVanK, he will answer your questions. He checks the posts and answers.

    Love, Mikie