CFS testing

Discussion in 'Fibromyalgia Main Forum' started by Atlanta8, Oct 17, 2008.

  1. Atlanta8

    Atlanta8 New Member

    Can we compile a list of tests that those with CFS should have done? My doc doesn't know much/ anything about CFS but is happy to listen to treatment suggestions... I just read about the antibiotics treatment and realised there's so much that needs to be checked out, I just don't know where to start! - So far, all I've had is a standard blood count done(!)

    If you could also add a quick details about the test, and how important it is to get done that would be great too.

    I'd be eternally grateful to anyone who can help...
    Steph :)
  2. Belinha

    Belinha New Member

    Read you first paragragh to yourself,out loud, and really listen to yourself "Can we compile a list of tests with CFS, should have done? My doc doesn't know/much, anything aboug CFS but is happy to listen to treatment suggestions... I just read about about antibiotic treatment and realised there's so much that need to be checked out, I just don't know where to start!- So far, all I i've had is a standardad count done(!)

    You have already started with the first step which is the blood test. Second, i fyour Dr. doesn't know much anything about cfs, why would he be happy learning about treatment suggestions? Is he going to give intructions on treatment suggestions to a patient with CFS? DROP YOUR DOCTOR! find a Dr. who knows what CFS is before wanting to know how to treat eat... That's threading on thin ice speciacially when his patients are the ones that will be on that thin ice.
    After your Xray, your bloods, your first meds, and then your follow up blood tests to decide if you do have CFS and what other drugs and treatments you need to follow up. Go and promise me you'll find a specialist on the ilness
    that is ready to give you answers not ask you questions about the illness. Lots of lists of good Dr.'s here not quacks trying to get a degree online from the knowledge of the patients that have been in pain for some many years. Now did that help you any, or do you feel I was out of line? I don't think so.

    Love to you and good luck on finding good help!
  3. Atlanta8

    Atlanta8 New Member

    Yes I know what you mean, but I live in the UK and things aren't that simple. The doc I was talking about is my GP. She's the only doc I have access to at the moment, and like I said, she's very helpful but very restricted at the same time. The NHS wouldn't even let her test my thyroid levels beyond TSH because that was normal, even though I have 9 close family members that are hypo and am displaying all the classic signs!!

    I have been referred to a CFS clinic on the NHS, but (and I know how disgraceful this is) - the NHS don't believe in "treating" CFS patients. They drum into us that it's an 'incurable' illness from the off, so they don't have to bother with finding the root causes. Even worse, the clinic in question (one of the best in the UK, I'm told) has, for my first appointment, sent me to see a PHYSIOTHERAPIST!! I assume he's the best physiotherapist in the whole world if they're allowing him to diagnose and "manage" (as the NHS like to say) this condition... *sigh*

    There aren't many specialist docs that are used to treating CFS over here (I know of two, but have heard mixed reports about them both).

    Also I don't have health insurance (and even if I got it now, it would exclude CFS as it's a "pre-existing condition")so I have to pay for everything myself, so I want to stay out of docs offices as much as I can.

    Hope that doesn't sound like I'm moaning, but that's how it is - if I want to get better I've got to do it by myself, hence me wanting a list of tests which would be valuable in helping me find the correct specialist/ treatment for any underlying causes.

  4. redhummingbird

    redhummingbird New Member

    There are a lot of things to test for when one has CFS. I'll list some here. Hopefully others will add to the list. I noticed in you bio that you are planning on seeing Dr. Lerner?

    If you have CFS that has a viral component, he's the doctor to see.


    Hormones: adrenal funtioning, throid, progesterone/testosteron/estrogen, etc...

    Viral Infections: EBV, CMV, Parvovirus B19, HHV 6,

    Bacterial: Mycoplasma, Chlamydia Pneumonia, Lyme

    It's also a good idea to test for mold in the home.

  5. 3gs

    3gs New Member

    hi steph

    i to am dealing with a doc that is willing to do tests but knows nothing. He had no idea how to test for cfs and doesnt offer treatment unless I suggest it.

    frustating but all I have right now. I liked your post because this is what Im trying to do compile a list.

    Belinha your post was rude. Maybe if we educate some docs it goes better for the next person.
    Maybe you need to reread the tone of your response.

    best of luck Steph and if I learn info Ill post it
  6. ellikers

    ellikers New Member

    Pretty much tests for CFIDS/CFS is about ruling out other things, to make sure you don't have other diagnoses or disorders, etc.

    Usually these are run to rule out other things:
    - HIV test
    - general blood tests to check immune system functioning (white blood cells types etc)
    - thyroid levels
    - mono/ other viruses

    Then depending on your other symptoms, they would check for specific problems you may have, such as if you have chronic digestive/stomach problems, they could test for the bacteria h.pylori, check for ulcers, go endoscopy exams, run a GI tract test to check for yeast, bacteria, parasites, if you have allergies to certain foods, enzyme levels, etc.

    Something they tested much later for me which would have been nice if they checked earlier was my cortisol levels and vit D levels.

    If I think of any others I will check back and post. :)
  7. Rafiki

    Rafiki New Member

    I'm in the same situation you are. I take information to my doc. all the time.

    I would not, especially in the UK, drop an open minded doctor like that!

    Why not check out the Canadian guidelines for doc.s.

    good luck!

    ETA Uhm, it's not a guideline to find doc.s, it's a guideline for treating physicians about ME.

    Sorry, I am seriously struggling with English lately!

    [This Message was Edited on 10/18/2008]
  8. Atlanta8

    Atlanta8 New Member

    Thanks for all the replies guys! I'll compile a list of all the tests (and maybe even print out the Canadian protocol for her - lol) and take it to my appointment weds, and see what she is able to do.

    I have just found a private doc who uses lots of American protocols and tests, does IVs and what not - best of all he's in my city! Talk about luck! But, that's obviously going to cost, so any tests I can get for free on the NHS will be great.

    And I am definately sticking with her - most UK GPs would have long given up on me by now and I'd be drugged to the eyeballs on antideps!

    I hope those in similar situations can find some help soon too :)

  9. CelticStar

    CelticStar New Member


    I am new to these boards but I hope you don't mind me asking which private doctor you are going to see - the one who uses lots of American protocols and tests?

    I live in the UK as well (Cumbria) and I have had ME/CFS for a long time. I have a sympathetic, decent GP but she doesn't have much knowledge of ME/CFS so I am looking to find a proactive private GP. I would really appreciate it if you could give me the details of the one you have read about.

    Thanks so much.
  10. ladybugmandy

    ladybugmandy Member

    cytokine testing


    antibodies (all subclasses available) to:

    EBV, HHV6, Hep C, Parvovirus B19, Barbesios, Erlichios, Lyme, Mycoplasmas, H. Pylori, and others.

    RNase L activity and RNase L isoform ratio

    Leukocyte elastase


    gut dysbiosis

    heavy metals



    if you have been to asia or south america, there are other parasite tests you should have done.

    there may be other tests but that is all i can remember right now....

  11. ladybugmandy

    ladybugmandy Member

    thyroid too!
  12. Shalome1990

    Shalome1990 New Member

    I have to first say that I wish every American who voted for Obama could read this email strand. Our medical system leaves a lot to be desired, but we still have it a lot better than a lot of other countries!!

    My local doctor seemed very open minded, but when the Teitlebaum book detailed my treatment to include sleep medicine, cortisol, armour thyroid, and several others, she said, We can try ONE of these. Well, that is the problem, they have to all be done at the same time. I can say on my CBC everything showed normal. However, when I went to a real Chronic Fatigue/Fibro doctor at the FFC in Atlanta and she ran the tests she could see that everything was out of whack. Immune system was low, thyroid was low, progesterone ....I could go on and on.

    I would suggest a sleep study too.
    Allergy testing
    testing for candida (blood and stool)
    and I just got special Bacterial panel testing and the Viral Testing done recently. I should have those results in a couple of weeks.
    [This Message was Edited on 11/11/2008]
  13. richvank

    richvank New Member

    Hi, all.

    Based on my current understanding of CFS and my experience with it so far (and I have been researching it for over 12 years), I would say that the most important test to get is the methylation panel. In the U.S. it is offered by Vitamin Diagnostics, Inc., and in Europe it is offered by the European Laboratory of Nutrients in the Netherlands. I am not affiliated with these laboratories. Here is the contact information for Vitamin Diagnostics:

    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)

    This panel costs $300 and requires an order from a doctor or chiropracter. The best way to get it is to ask your doctor to fax an order for it, requesting that the kit for collecting the blood samples be sent to your address. It's a special kit with preservatives to protect the glutathione. Dr. Audhya is willing to help physicians with interpretation of the panel results over the phone.

    Here is a discussion of the way I interpret the results of this test panel:

    Several people have asked for help in interpreting the results of
    their Vitamin Diagnostics, Inc., methylation 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. Audha, 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 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 directly 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 are 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 hundreds of biochemical reactions depend on it for their methyl
    groups. A low value for SAM represents low methylation capacity, and
    it usually results from a partial block at the enzyme methionine
    synthase. Many of the abnormalities in CFS result from 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. Most 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 toxin buildup.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. It is usually low 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 low value. 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. 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 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 normally 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.

    Rich Van Konynenburg, Ph.D.
    [This Message was Edited on 11/11/2008]
  14. hermitlady

    hermitlady Member

    My doc is quite knowledgeable on standard medical treatments for CFS and he believes that there may be problems possibly down to mitochondrial dysfunction.

    I'm going to start testing for that soon, also amino acid profile from blood and urine. I'm in the midst of having Adrenal testing also.

    Saliva testing seems to be the most accurate way for some of our tests, but regular md's don't believe in them. You can get some saliva tests online and have them interpreted by a doc.

    I had a sleep study which showed I had low hrs of REM sleep, so not getting rested. I also have to get a sleep deprived EEG to check for possible seizure disorders.

    I'll see if I can think of more. Try using the search option...good luck.
  15. garcia

    garcia New Member

    Hi Rich,
    I tried looking up the methylation panel test on the European Laboratory of Nutrients website ( but couldn't find it. Can you possibly confirm that the test is available from them, and what its called?

    Many thanks,
  16. richvank

    richvank New Member

    Hi, garcia.

    As far as I know, the European lab calls it the methylation pathways panel, as the American lab does. I think one has to order the reduced and oxidized glutathione in addition to the methylation panel from the European lab, while the American lab automatically includes them in the panel.

    I don't know where you live. From your name, it would seem as though Spain is a possibility. I understand that the European lab is setting up a branch lab in Spain.

  17. Forebearance

    Forebearance Member

    Hi Steph!

    There are SO many tests that you could do to rule things in or out for CFS. I think you should read as much as you can and try to figure out which tests would be most relevant for you. And discuss it with your doctor.

    I also have an open-minded doctor who doesn't know anything about CFS. It works great for me, because I am willing to do the research and figure out what treatments I want to try, and which tests I want to take. Then I run my ideas by her and get her opinion, and we figure out together what would make sense for me. So we work like a team.

    She trusts me, and I trust her. She makes sure that I'm not getting some other illness that is hiding behind the CFS symptoms. Because I couldn't possibly know all the medical info she knows about every illness. And the main thing is, she believes that CFS is a real illness.

    You could spend so much money on this that I just don't know what to tell you.
    The tests that helped me the most were all the basic ones that ruled things out, that people have already listed, and the tests on Dr. Shoemaker's web site:

    I wish you all the best. I also pay for all my tests myself because my insurance has a big deductible. (That's something that can happen here in the US.)

  18. garcia

    garcia New Member

    Thanks Rich,
    its not one of the ones listed on their website, so I've emailed them to ask for prices/availability.
    Many thanks,
  19. Forebearance

    Forebearance Member

    Oh hey, Steph,

    Quamijay just posted this link, which I will re-post here:

    Dr. Myhill has an organized plan that you and your doctor could follow. It might make things less confusing!