New here...starting to feel REALLY discouraged about CFS!

Discussion in 'Fibromyalgia Main Forum' started by phantomsmom, Oct 8, 2009.

  1. phantomsmom

    phantomsmom New Member

    Hi all--

    I have tried for two DECADES to get help for debilitating fatigue, only to have been ridiculed or put on every anti-depressant known to man at one point or another. Given that people with CFS are often NOT depressed (just exhausted) and highly sensitive to medications, I didn't do well on any of them.

    I divorced a few years ago after years of staying home to raise my kids, so now I am in a job that is 30 miles from my home and does not pay enough to cover my basic monthly bills. Thankfully I get child support for another year, but then what??

    I had a GP who sent me to specialists for all sorts of tests for a year, THEN informed me I DO have CFS and needed to be on Provigil. Finally I thought I was getting somewhere...until she insisted on a full psychiatric evaluation and sleep study ($1,300 out of pocket...can't do it) before she would prescribe. When I broke down crying at the futility of it all, she informed me that I "obviously" needed to check into a psychiatric hospital for long-term was horrible.

    Needless to say, I no longer have a GP! However, I also go to a pain management doctor who told me yesterday she was thinking that Provigil might help me tremendously, especially since I am so tired that I am falling asleep at stoplights on my way to and from work and can barely function. GREAT...maybe there IS hope...

    ...or maybe not: my insurance company wants my doctor to "prove" to them that I need Provigil, so it seems I've made no progress at all. Honestly, given my sensitivity to medications it isn't likely I will be able to tolerate it, but it would be nice to at least be able to try it and rule it out if necessary.

    So, here are my questions:
    1. If the insurance refuses to cover, how/where can I go to use my prescription and order the Provigil (or generic) online?

    2. My former GP wanted to put me on disability and I'm sure the pain management doctor would agree that might be the best thing, but then what? I'm already barely surviving on what I make, so taking a pay cut isn't an option. Also, if I take disability I know I will be "black-listed" in my industry (not a big deal, since I've only been in it 18 months and it doesn't pay nearly as well as I'd hoped) and will no longer have a job. How hard is it to get early Social Security benefits, and will that even help me since I didn't work for so long??

    Obviously I am at my wits' end and don't know what to do. Every day I get home, spend another 90 minutes on my feet working to prepare dinner, then I go to my room and cry until I fall asleep...then I wake up and (after being tormented with nightmares and crummy sleep) and do it all over again...sorry, but did I miss the joy of life somewhere?????

    Thanks so much for any advice and encouragement,
  2. loto

    loto Member

    of the provigil from your doctor first to make sure you'll be able to tolerate it?? I don't know about the Provigil, but i know on the NUVIGIL site there is a really good coupon you can print out.
    My doctor put me on Nuvigil, and it did help me with the sleepiness problem, but in my case it made my tongue swell up, so I had to stop taking it. So now I'm back to seeking something to help me with my fatigue.
    Anyway, ask your doctor if you can get a sample to try first!!
    Hang in there!
    You've found a great board here, everyone supports everyone!!!

  3. richvank

    richvank New Member

    Hi, Ava.

    I'm very sorry to hear about what you have been going through. As you have been experiencing, the conventional medical system doesn't have a cure for CFS, nor does it have very effective treatments. Many PWCs (people with CFS) have gone through the same experiences that you have, unfortunately.

    I am a CFS researcher, and have been working on trying to understand its basic causes and pathogenesis (development of the disease) for about 13 years. I still have a lot to learn, but I do think that progress has been made. I have developed a hypothesis to explain these initial aspects of CFS, and so far it seems to be holding up to testing. I think I do now understand what happens at the beginning of a case of CFS.

    However, there is more to CFS than just its beginning, and I'm learning that to treat it effectively, one has to deal not only with how it started, but with what happened after that.
    I think that CFS is sort of like a train wreck in that regard. There are initial causes and an inital derailment, but then a lot happens after that, and to remedy the whole situation, one has to deal with both the initial aspects and with the things that followed that will not clear up themselves.

    In CFS, a couple of the main things that happen over time after the initial onset are accumulation of infections and buildup of toxins in the body. These things happen because the initial "train wreck" events cause the immune system and the detox system to operate poorly. So some of these aspects seem to need particular attention in treatment.

    My hypothesis for the initial process in the onset of CFS involve depletion of a substance in the body called glutathione, and a partial block in a cycle in the biochemistry called the methylation cycle. These two become intertwined, and that causes CFS to be a chronic condition.

    Some people who study autism have found a way to correct these initial problems in autism, which appears to bear a lot of similarity to CFS in terms of the basic biochemical dysfunction.
    This same treatment approach has been found to work in CFS to correct these initial problems, and probably more than a thousand people have tried this so far. About two-thirds of those who have tried it find that it helps them. I'm working on trying to understand why it hasn't helped the other third, and I think I have identified some of the reasons in the few cases I've been able to study.

    I understand that your finances are very tight. The treatment itself is not very expensive--less than $3 per day. No prescriptions are needed, because it consists of certain targeted nutritional supplements, not drugs. I do, however, recommend that people run a certain lab test panel before deciding, with their physicians, whether to try this treatment. The lab test panel costs $300, requires an order from a physician or a chiropracter, and is not covered by insurance. I am not financially connected to either the test or the treatment.

    I will post information below about the test and this initial treatment. I hope this is helpful.

    Best regards,

    Rich Van Konynenburg

    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help clinicians with interpretation of the panel by phone, or the following comments can be used:

    Interpretation of the Vitamin Diagnostics
    Methylation Pathways Panel

    Rich Van Konynenburg, Ph.D.

    Several people have asked for help in interpreting the results of
    their Vitamin Diagnostics, Inc., methylation pathway panels. Here are my
    suggestions for doing so. They are based on my study of the
    biochemistry involved, on my own experience with interpreting more
    than 120 of these panel results to date, and on discussion of some of
    the issues with Tapan Audhya, Ph.D., who is the director of the
    Vitamin Diagnostics lab.

    The panel consists of measurement of two forms of glutathione
    (reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
    adenosylhomocysteine (SAH), and seven folic acid derivatives or

    According to Dr. Audhya, the reference ranges for each of these
    metabolites was derived from measurements on at least 120 healthy
    male and female volunteer medical students from ages 20 to 40, non-
    smoking, and with no known chronic diseases. The reference ranges
    extend to plus and minus two standard deviations from the mean of
    these measurements.

    Glutathione: This is a measurement of the concentration of the
    reduced (active) form of glutathione (abbreviated GSH) in the blood
    plasma. From what I've seen, most people with chronic fatigue
    syndrome (PWCs) have values below the reference range. This means
    that they are suffering from glutathione depletion. As they undergo
    the simplified treatment approach to lift the methylation cycle
    block, this value usually rises into the normal range over a period
    of months. I believe that this is very important, because if
    glutathione is low, vitamin B12 is likely unprotected and reacts with toxins
    that build up in the absence of sufficient glutathione to take them
    out. Vitamin B12 is thus “hijacked,” and not enough of it is able to
    convert to methylcobalamin, which is what the methylation cycle needs
    in order to function normally. Also, many of the abnormalities and
    symptoms in CFS can be traced to glutathione depletion.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. In many (but not all) PWCs, it is elevated above the normal
    range, and this represents oxidative stress.

    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. Adenosine is a product of the reaction that converts
    SAH to homocysteine. In some PWCs it is high, in some it is low, and
    in some it is in the reference range. I don't yet understand what
    controls the adenosine level, and I suspect there is more than one
    factor involved. In most PWCs who started with abnormal values, the
    adenosine level appears to be moving into the reference range with
    methylation cycle treatment, but more data are needed.

    S-adenosymethionine (RBC) (SAM): This is a measure of the
    concentration of SAM in the red blood cells. Most PWCs have values
    below the reference range, and treatment raises the value. S-
    adenosylmethionine is the main supplier of methyl groups in the body,
    and many biochemical reactions depend on it for their methyl
    groups. A low value for SAM represents low methylation capacity, and
    in CFS, it appears to result from a partial block at the enzyme methionine
    synthase. Many of the abnormalities in CFS can be tied to lack of
    sufficient methyation capacity.

    S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
    concentration of SAH in the red blood cells. In CFS, its value
    ranges from below the reference range, to within the reference range,
    to above the reference range. Values appear to be converging toward
    the reference range with treatment. SAH is the product of reactions
    in which SAM donates methyl groups to other molecules.

    Sum of SAM and SAH: When the sum of SAM and SAH is below 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathione beta synthase (CBS)
    enzyme, though this may not be true in every case.

    Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
    methylation capacity. Both the concentration of SAM and the ratio of
    concentrations of SAM to SAH are important in determining the
    methylation capacity.

    5-CH3-THF: This is a measure of the concentration of 5-methyl
    tetrahydrofolate in the blood plasma. It is normally the most
    abundant form of folate in the blood plasma. It is the form that
    serves as a reactant for the enzyme methionine synthase, and is thus
    the most important form for the methylation cycle. Many PWCs have a
    low value, consistent with a partial block in the methylation cycle.
    The simplified treatment approach includes FolaPro, which is
    commercially produced 5-CH3-THF, so that when this treatment is used,
    this value rises in nearly every PWC. If the concentration of 5-CH3-
    THF is within the reference range, but either SAM or the ratio of SAM
    to SAH is below the reference values, it suggests that there is a
    partial methylation cycle block and that it is caused by
    unavailability of sufficient bioactive B12, rather than
    unavailability of sufficient folate. I have seen this frequently,
    and I think it demonstrates that the “hijacking” of B12 is the root
    cause of most cases of partial methylation cycle block. Usually
    glutathione is low in these cases, which is consistent with lack of
    protection for B12, as well as with toxin buildup.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. It is usually on the low side in PWCs.
    This form of folate is involved in reactions to form purines, which
    form part of RNA and DNA as well as ATP.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma.
    Most but not all PWCs have a value on the low side. This form is not used
    directly as a substrate in one-carbon transfer reactions, but it can
    be converted into other forms of folate. It is one of the
    supplements in the simplified treatment approach, which helps to
    build up various other forms of folate.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. In PWCs it is lower than the mean normal value of 3.7
    nanomoles per liter in most but not all PWCs. This is the
    fundamental chemically reduced form of folate from which several
    other reduced folate forms are made. The supplement folic acid is
    converted into THF by two sequential reactions catalyzed by
    dihydrofolate reductase (DHFR). THF is also a product of the
    reaction of the methionine synthase enzyme, and it is a reactant in
    the reaction that converts formiminoglutamate (figlu) into
    glutamate. If figlu is high in the Genova Diagnostics Metabolic
    Analysis Profile, it indicates that THF is low.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. Low values suggest folic acid deficiency in the
    current diet. High values are sometimes associated with inability to
    convert folic acid into other forms of folate, such as because of
    polymorphisms in the DHFR enzyme. They may also be due to high
    supplementation of folic acid.

    Folinic acid (WB): This is a measure of the concentration of folinic
    acid in the whole blood. See comments on 5-formyl-THF above. It
    usually tracks with the plasma 5-formyl-THF concentration.

    Folic acid (RBC): This is a measure of the concentration of folic
    acid in the red blood cells. The red blood cells import folic acid
    when they are initially being formed, but during most of their
    approximately four-month life, they do not normally import, export, or use
    it. They simply serve as reservoirs for it, giving it up when they
    are broken down. Many PWCs have low values. This can be
    caused by a low folic acid status in the diet over the previous few
    months, since the population of RBCs at any time has ages ranging
    from zero to about four months. However, in CFS it can also be
    caused by damage to the cell membranes, which allows folic acid to
    leak out of the cells. Dr. Audhya reports that treatment with omega-
    3 fatty acids can raise this value over time.

    April 18, 2009


    (Extracted from the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])


    1. FolaPro [2]: ¼ tablet (200mcg) daily
    2. Actifolate [3]: ¼ tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
    4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
    5. Activated B12 Guard [6]: 1 sublingual lozenge daily

    All these supplements can be obtained from, or all but the third one can be obtained from other sources.
    The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They 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. They can be taken at any time of day, with or without food.
    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, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
    [2] FolaPro is a registered trademark of Metagenics, Inc.
    [3] Actifolate is a registered trademark of Metagenics, Inc.
    [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
    [6] Activated B12 Guard is a registered trademark of Perque LLC.

  4. jaynesez

    jaynesez New Member

    so sorry to hear of your troubles, your life sounds exactly like mine, except I have a great deal of pain as well. It's no kind of life to live at all, I know, and God willing soon I myself will file for disabilty (which will be a two year fight, at least). One thing I would suggest is to try and not worry about tomorrow, i.e., what happens when the support runs out, etc. It is far too easy to get ourselves stressed out and worked up, when we are dealing with an insurmountable pile of problems each day, namely, feeling like death warmed over, to constantly fret over the future. Of course, this doesn't mean you don't need a plan, but for right now, try not to overwhelm yourself with things that haven't happened YET. The stress just makes us sicker, and that is the exact opposite of what you need right now. Just think "I'll deal with it when the time comes". You have my empathy completely, and if at all possible, if you can try the meth block (rich's post) sorry, brainfog! or perhaps for now, get samples as the other poster suggested, and take one step, and one day at a time. Give yourself some credit for trying to work, and be a good mom, with a horrible condition. I'm sorry don't have more words of wisdome or help, just know that I am living exactly the same way, I just don't cry anymore, I try and find some peace here and there in the little things. Oh and I read for entertainment, because it's the only thing I can do anymore) and it helps take my mind away, at least for a little bit.