Diagnosis of exclusion = various tests

Discussion in 'Fibromyalgia Main Forum' started by isiselixir, Jun 4, 2009.

  1. isiselixir

    isiselixir New Member

    Here's my deal, I got gradually sick in 2006 around the Fall and stayed sick for 17 months, then miraculously recovered (I was housebound, fairly severe and then I recovered 100%). Then in 2008 I started to feel the exhaustion and symptoms return, and now I have full blown CFS again.

    My question is, since it has been so long since I had the basic tests to rule things out for CFS, what tests should I have done now? Should I start over and be tested for hormones, EBV, lyme, HHV-6, etc. all over again? What are all the tests? Is there a test for mycoplasma? Any input would be greatly appreciated :)
  2. jasminetee

    jasminetee Member

    I'm curious about why you want to get more tests done.

    I also want to say that I am so sorry you relapsed. That is very unfair.

  3. isiselixir

    isiselixir New Member

    Thanks for your kind words.

    I guess I feel like I haven't had what appeared to be some advanced or strange tests that some people are getting. For instance what are interleukins and what is NK function? I know I haven't had those tests. Also I am applying to social security again so I need to show the tests I've taken but since it is a diagnosis of exclusion, it seems impossible to prove. I wonder how those who got their SSDI did it.
  4. jasminetee

    jasminetee Member

    I had a feeling you were thinking of applying for SSDI. IMO, tests don't matter for us. I got my LTD and didn't have any of that testing done. OK, not that specific testing but I did spend many thousands of dollars seeing a CFS Specialist who was unable to help me although he wrote great letters. The problem was I found out they didn't count. See Below.

    I feel that the important thing is to get doctor documentation. The best way to do that is to find doctors who believe you are disabled. The way I finally found some doctors who wrote good letters for me was by Googling for "CFS (written out) Support Groups in _______" my town and then surrounding areas. Then I emailed the groups and asked for doctor recommendations; specifically doctors who are good at helping patients get disability. Even some of those were duds but I finally found a good Rheumy for my FMS and a family doctor who had had some CFS training.

    They wrote letters and I also found a great chiropractor who wrote a letter for me. Again, you can ask support groups for names to save you time. Then ask the secretary over the phone if the doctor believes in CFS to save even more time and energy. That saved time and energy for me once I thought of doing it.

    I believe that there are also materials here at Prohealth that explain how to file and win and if not, they used to be on the web. Let us know if you need help finding these.

    I've heard that you don't need to get a lawyer either. Why waste the cash, time and energy? You can expect to be denied the first or second time whether you have one or not. But most people are approved by the third time.

    Oh, one more thing, the CFS Specialists who charge alot aren't considered legit by most judges. You want to see regular MDs. Btw, NKs are Natural Killer Cells in your immune system and interleukins are part of the immune system too. All that means nothing to the judges as maddeningly, it's considered fringe medicine.

    Oh, and one more thing. Start keeping a list of all your symptoms each day and bring that to the doctors. I found a blank body chart online that I copied and then drew on as well. I used color markers for pain and weird symptoms and I had a key on them as well. That made documenting this crazy illness much easier.

    I also made copies of a Pain Level/Functionality Chart and then circled the level I was at. I did that about once a day I think. I gave the doctors all their own copies of everything so I didn't have to worry about stuff getting lost by their receptionists. I learned that the hard way too.

    Now this was all back in 2000 and mine was for a private Disability Company so it may be different now and for you.

    The best investment I made towards getting my disability was buying a copy machine. I need it still to make copies of doctor notes to keep up with the paperwork of being on disability.


    [This Message was Edited on 06/04/2009]
  5. richvank

    richvank New Member

    Hi, isis.

    If your goal is to find out what's wrong, treat it, and get well, I would suggest getting the Vitamin Diagnostics methylation pathways panel. Contact and interpretive information are shown below. If this panel shows that you have a partial methylation cycle block and glutathione depletion, which nearly all people with CFS who have been tested so far have been found to have, then I would suggest that together with your doctor, you consider the simplified treatment approach for lifting the methylation cycle block and restoring glutathione. The protocol for this treatment is also shown below. The fact that you have not been sick very long is an important factor in your favor.

    Best regards,


    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.

    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 http://www.holisticheal.com, 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.

    Rich Van Konynenburg, Ph.D.
  6. Nanie46

    Nanie46 Moderator


    You should consider getting a western blot IgG and IgM, test #188 and #189 from Igenex lab in CA.

    They are a reference lab specializing in tick borne disease.

    They are the very best when it comes to testing for lyme. Don't bother with other labs.


    It is important for you to know that lyme is never ruled out with a negative test.

    Lyme is a clinical diagnosis based on history and symptoms, although 99% of Dr's do not know enough about lyme to even know that.

    You can leave posts for me on the lyme board anytime if I can help you.
  7. frickly

    frickly New Member

    Wouldn't hurt to get another lyme test. Also, you might check to see if you have an active epstein barr infection. I get a lyme test along with glutithione/ATP and Mycoplasma blood test every six weeks to see where I am at in my treatment. The mycoplasma is a simple blood test. There are many strains of this bacteria but their are four that have been found to be common in many patients with Fibro, CFS and GWI, they include M. fermentans, M. hominis, M penetrans, M. pneumoniae. Treating myself for this bacteria has gotten me out of my chair and living my life again. Also, cyclic AMP plasma and glutithione is a simple blood test. You should know that most mainstream doctors know little about the above and will not want to do these tests. Also, I would not trust them to read the results correctly. You do need a doctor that specializes in CFS/fibro.
  8. Dlebbole

    Dlebbole New Member

    Hi Frickly, I'm interested to know if you have a doctor in Houston you recommend to treat CFS. Thanks!

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