May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

What tests do you guys recommend? Any uncommon tests you've found to be valuable

Discussion in 'General ME/CFS Discussion' started by overtheedge, Jul 11, 2017.

  1. overtheedge

    overtheedge

    Messages:
    97
    Likes:
    75
    Description in title
     
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,528
    Likes:
    24,596
    USA
    The tests I found the most valuable were for autoantibodies, POTS, breathing tests, mold/mycotoxins, and mast cell testing (but this is really so specific for each person). I personally never found all the viral testing to be of any use but I know it's been invaluable for others.
     
  3. lafarfelue

    lafarfelue Senior Member

    Messages:
    140
    Likes:
    487
    Australia
    Definitely POTS for me (perhaps include any testable hypotension/dysautonomia/OI options possible with this).

    Also the MTHFR mutation (which I ended up not having, but have seen evidence in other PwME that it's a good one to know because it often has a pretty link with ME symptoms/ has treatment that has a positive effect on ME symptoms).

    I am keen to undertake further antibody testing, as I already have unusual ANA levels and have noted that a number of PwME with high antibodies have had positive effect from IVIG and similar.

    (Another PwME I know--who has/had ME for 17yrs and is essentially 'in recovery' now--swears that testing for Lyme is absolutely crucial, and that most PwME they know directly have had positive effect from treating for Lyme. YMMV.)
     
    ahimsa, Gratefulliving and Mel9 like this.
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,910
    Likes:
    12,757
    Sth Australia
    -POTS testing (poor mans test) to diagnose POTS and show up my other dysautonomia. ALL ME/CFS people should make sure they've had this test or tilt table test done.

    -Testing for MTHFR mutation (in my case I do have a double copy of the worst mutation of it.. treatment of that helped some). This too is a must do test in cause you have this making things worst.

    - testing for things to support my ME/CFS diagnoses to make me feel more sure that's what I have (even if I have other stuff too) . If you are going for that kind of testing make sure u know what the normal ME abnormalities are and then get testing to see if u have.. eg I showed non specific abnormalities in EEGs which are the kind often seen in ME. Had a postive Rombergs test etc etc. (though those supportive tests I had dont help in treatment, they can help doctors see that you actually do have something going on if u come across a doctor who thinks its all in your head).

    - Testing for insulin resistance/hyperinsulinemia via a 2hr Glucose Tolerance test WITH the insulin results included (anyone here with food issues suggestive of that should get themselves tested for this. This can give a lot of different symptoms but most drs are unaware it can do so...and of cause if problems found, this is treatable).

    - Hair testing picked up deficiencies in which when I supplemented for them, it really helped my brain a lot. I was able to do maths in my head again within days, something which I had been unable to do for years. (I had near nil molybdenium which is an essential trace mineral come up on hair test and it was that deficiency which affected dramatically my working memory). Anyway hair testing can pick up deficiencies you may not otherwise find out about.
     
    ahimsa, Mary and bspg like this.
  5. Jessie 107

    Jessie 107

    Messages:
    92
    Likes:
    251
    Brighton
    What is IVIG?
     
  6. TenuousGrip

    TenuousGrip Senior Member

    Messages:
    183
    Likes:
    654
  7. *GG*

    *GG* Senior Member

    Messages:
    6,157
    Likes:
    4,762
    Concord, NH
    Recommend for what? Treatment or proof of disability?

    GG
     
  8. overtheedge

    overtheedge

    Messages:
    97
    Likes:
    75
    @Gingergrrl which autoantibodies have you been tested for? Also, I'm not familiar with mast cell testing, what's it like? In what sort of way did these tests help you?

    in terms of antibodies, not sure how many are autoantibodies, I've had quite a number tested, I'll list em all hoping that the info will help some of you folks

    for celiac disease: endomysial antibody IgA; t-transglutaminase (tTG) IgA and IgG
    thyroid: thyroid peroxidase (TPO) Ab; Thyroglobulin
    For diseases that might mimic CFS: RNP antibodies; smith antibodies; antiscleroderma-70 antibodies; sjogren's anti-ss-a and anti-ss-b; antichromatin antibodies; anti-Jo-1; anti-centromere b antibodies
    from another list for diseases, may overlap with the above list:
    antinuclear antibody, direct (ANA-D) to test for SLE, mixed connective tissue diseases
    dsDNA to test for SLE
    chromatin to test for drug induced SLE, SLE
    SSA (Ro) to test for SLE, sjogren's syndrome, neonatal lupus
    SSB (La) to test for SLE sjogren's syndrome
    Sm (anti-Smith) to test for SLE
    RNP to test for mixed connective tissue disease, SLE
    anti-ribonucleoprotein to test for polymyositis and/or dermatomyositis
    Scl-70 (antiDNA topoisomerase) to test for scleroderma (diffuse), crest
    Jo-1 to test for polymyositis and/or dermatomyositis
    centromere B to test for scleroderma - crest variant
    rhumatoid factor

    All came back negative for me

    Epstein Barr Virus always comes up in a chronic reactivated state
    which means that EBV Ab VCA, IgM always comes up negative while EBV early antigen Ab IgG; EBV Ab VCA, IgG; and EBV Nuclear Antigen Ab, IgG always come up positive
    I took a supplement for a while that made some, maybe all, come up negative, I was working with a different doc at the time who only tested one of these, whichever one it was came up high the first time, so she put me on a rather esoteric supplement called retrovir pro which, according to them was some rare thing from overseas, I tested after taking it and the antibody was negative, then stopped it and the antibody was positive again. I stopped the supplement though, never felt any improvement whatsoever

    I used to have POTs, it went away around the time i started taking Sea Salt daily, my blood pressure is now close to being high though as I've used the seasalt perhaps too frequently and have been eating foods high in sodium at times without having noticed so I stopped taking sea salt but there have been many months where I haven't taken it since getting over POTs and POTs didn't resume so the salt was probably a long term fix, I was testing other things around the same time as the sea salt but I'm fairly certain it was the salt.

    I read an interesting thing recently about the adrenals and salt, there was a boy who was eating salt like crazy, putting it on everything and eating it right out of the shaker, the parents were concerned so they took him to the hospital where he was denied the salt and died shortly thereafter. Turns out he had an adrenal tumor and the only thing keeping his adrenals running was his high intake of salt.
    I've read books on adrenal fatigue which I may have had before the taking of sea salt and one of the main things that come with adrenal fatigue is a craving for salt and POTs and sea salt daily in water is recommended to treat the adrenals. Has something to do with aldosterone too but it has been too long.



    @*GG* for treatment
     
    Last edited: Jul 13, 2017
    lafarfelue and Gingergrrl like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,528
    Likes:
    24,596
    USA
    I was tested for ANA and all of the traditional/common autoantibodies by a rheumy and was positive for the two Hashimoto's abs which I already knew plus ANA titer was 1:160 speckled pattern. I was tested by Cell Trend (Germany) for the beta-adrenergic, anti-muscarinic/ anti-cholinergic abs (was positive for seven of the nine), and tested for different panels from Mayo Clinic (PAVAL- paraneoplastic panel, MuSK panel, GAD65, etc). Mast cell testing usually involves blood and urine testing of histamine, prostaglandins, tryptase, etc.

    It helped diagnostically to treat my MCAS and to formulate my treatment plan (high dose IVIG and Rituximab) and also which additional tests to order like a yearly lung cat scan (b/c my calcium autoantibody correlates with small cell lung cancer- which thank God I do not have), LEMS testing, Sniff test of diaphragm, etc.

    The autoantibodies are attacking your own body vs. antibodies are toward a virus or pathogen that is separate from your body. I am certain someone can explain it better than I just did!
     
    overtheedge likes this.
  10. overtheedge

    overtheedge

    Messages:
    97
    Likes:
    75
    @lafarfelue which tests do you recommend for dysautonomia? I've read about lyme testing but could never get a clear picture as to which test specifically was right for it


    @taniaaust1 Yeah, I'm glad I did MTHFR testing, had homozygous C677T so when I tested homocysteine it was high and was able to correct that with methylation supplements, could have been bad longterm


    Hair testing always comes up with extremely elevated copper, I've tried a lot of things for it, interesting note on this, when I added high levels of molybdenum to lower copper, while it didn’t lower the copper the molybdenum did significantly increase on the next test I ran so I’ve also see that hair tests are accurate, although, some of the minerals may not indicate body stores but rather some function of the body.


    Back when my adrenals were real messed up, mind you this is based on symptoms and response to adrenal supplements, i didn't have any saliva cortisol tests done back then, my calcium and magnesium would always come up high while potassium and sodium came up low which indicates adrenal problems if I remember correctly, at least some part of it does, those four elements can mean a lot of things based on their status on the hair test. I've currently moved to a different house in hopes of lowering my copper levels which have been elevated for more than seven years now, elevated copper and/or elevated mercury can cause CFS symptoms from what I've read and my bathroom had bluegreen stains all over it which could indicate copper levels were high in the water, I did a number of at home water tests, some came up high, others low so I don't know for sure what the deal is there. I also had some cladosporium mold in the house I moved from, confirmed by testing, that was springing up all over my room.


    I went to an allergist who did a bunch of histamine based skin prick tests, all came up negative, surprisingly the bill for that testing is pretty heavy, near a grand, would have been bad without insurance. No indication though that that kind of cladosporium wasn't giving off VOC or something else toxic.
     
  11. Alexandra90

    Alexandra90

    Messages:
    76
    Likes:
    123
    Sweden
    Why is POTS test important? There are no treatments for it besides high salt diet or betablockers if I understand it correctly?
     
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,910
    Likes:
    12,757
    Sth Australia
    with hair testing take care as though it can be very accurate in showing deficiencies, it may inaccurately show up excesses of things depending on what you wash your hair with and the things in the air and in your water which can just absorb into your hair

    Hence when it comes to seeing something high on a hair test, see if u can get it then confirmed by a blood test ... eg though copper is stored in body tissues and u can have high copper levels but not see this in the blood. I think Ive read this can be blood tested in a chelation challenge which helps the body release it so it can be more accurately tested (but this should be monitored by someone who understands this can also be dangerous, chelate to release to much, it can then lodge in the brain).

    In my case Im sure my copper results were correct...In past I had a copper IUD, and my mother has a high copper load and has the copper spots in one of her eyes. My copper on hair testing did go down after I took things to help get it down.
     
  13. lafarfelue

    lafarfelue Senior Member

    Messages:
    140
    Likes:
    487
    Australia
    It's important for a number of reasons, one of which is to reduce misdiagnosis of POTS, which is often mistaken for other things.

    This post/thread provides further insight: http://forums.phoenixrising.me/index.php?threads/puzzled-about-pots.52900/#post-876609

    The comments in this blog post is also relevant: http://forums.phoenixrising.me/inde...kg-3st-6lb-while-ill-with-severe-me-cfs.2197/

    There are also a number of POTS related posts in the forums that have more information on things like differing types of POTS, what helps different people (including adjustments to living/sleeping spaces), etc.
     
  14. Webdog

    Webdog Senior Member

    Neurocognitive function testing is the only abnormal test I've had so far that doctors take seriously.
     
  15. Mary

    Mary Senior Member

    Messages:
    2,780
    Likes:
    6,215
    Southern California
    Nutreval testing showed a couple of severe deficiencies - most notably B6 and leucine. Adding in P-5-P helped my energy and overall functioning, and taking branched chain amino acids (leucine is one of these) cut my PEM recovery time in half. So I'm extremely grateful I had this testing one.

    My former ME/CFS doctor (he died last year) also did a hair analysis every year. It always showed my B12 as basically undetectable despite taking large amounts so it was a good spur to keep taking lots of B12. He also recommended various minerals depending on the results. It was interesting to see my numbers very slowly over several years start to improve.
     
    lafarfelue and Learner1 like this.
  16. Learner1

    Learner1 Professional Patient

    Messages:
    1,182
    Likes:
    1,930
    Pacific Northwest
    23andme
    Immunoglobulins with subclasses
    Cell Trend
    Testing for infections (it took multiple tests, multiple times to find 'em due to suppressed immune function)
    Genova Diagnostics NutrEval
    GI Effects or DiagnosTechs stool test
    Doctors Data provoked Urine Heavy Metals test
    DUTCH (Dried Urine Test of Comprehensive Hormones)
    Iron panel
    Thyroid panel with rT3, TRH, antibodies
    Aldosterone
    ADH
    ANA
    Cyrex food allergy tests
     
  17. overtheedge

    overtheedge

    Messages:
    97
    Likes:
    75
    what are the beta-adrenergic, anti-muscarinic/ anti-cholinergic abs for?

    So the PAVAL panel is for likelihood of cancer or to detect active cancer, MuSK is for Myasthenia Gravis, and GAD65 is to detect diabetes, is that correct?

    I have heard of myasthenia gravis being a cause of CFS, this list is from the book treating and beating cfs, I found it interesting, check it out

    "These illnesses must be ruled out before treating CFS/ ME:

    Autoimmune Disorders ›Behçet’s syndrome ›dermatomyositis ›lupus ›polyarteritis ›polymyositis ›Reiter’s syndrome ›rheumatoid arthritis ›Sjögren’s syndrome ›vasculitis

    GI Disorders ›celiac disease ›Crohn’s disease ›irritable bowel syndrome ›sarcoidosis ›ulcerative colitis

    Blood Disorders ›anemia ›hemochromatosis

    Endocrine/ Hormonal Disorders ›Addison’s disease ›Cushing’s syndrome ›diabetes mellitus ›hyperthyroidism ›hypothyroidism ›ovarian failure ›panhypopituitarism

    Malignancies/ Cancer ›Hodgkin’s disease ›lymphoma

    Neuromuscular Disorders ›fibromyalgia ›muscular dystrophies ›multiple sclerosis ›myasthenia gravis

    Sleep Disorders ›sleep apnea ›narcolepsy

    Infections ›subacute infections ›bacterial endocarditis ›chronic brucellosis ›mononucleosis ›hepatitis ›HIV infection ›Lyme disease ›occult abscess ›poliomyelitis/ post-polio syndrome ›tuberculosis ›parasitic infection ›fungal infection

    Other Conditions ›major depressive disorders ›bipolar affective disorders ›schizophrenia ›obesity ›alcohol or substance abuse ›reactions to medications"


    @taniaaust1 I checked my shampoo, it doesn't have copper or zinc
    I've read that copper in the water that is enough to alter hair levels will raise body levels as well

    My blood copper levels and ceruloplasmin are fine but my zinc is always going low unless I supplement, while that may be because of something else going on with the CFS I have been wondering if it isn't because of high copper in the body. Did you ever have your blood levels of copper or zinc tested. I've had edta chelation done but the provocation test didn't show copper unfortunately, it's too bad, even after two dozen rounds of chelation I didn't notice any change to my health.
    About the metals on the test, lead/mercury and all, while they did go down after the first 8 or so rounds of chelation they then stalled at that point and didn't budge during the rest of chelation

    did you notice a difference once you brought your copper down
     
  18. Alvin2

    Alvin2 If humans were rational...

    Messages:
    1,307
    Likes:
    3,654
    Don't do this kind of testing (sorry i couldn't resist)
     
    Last edited: Jul 20, 2017
  19. Learner1

    Learner1 Professional Patient

    Messages:
    1,182
    Likes:
    1,930
    Pacific Northwest
    It used to be that you couldn't be diagnosed with ME/CFS unless everything else was excluded. That is not true now.
     
    Gingergrrl likes this.
  20. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,528
    Likes:
    24,596
    USA
    They are part of a panel of nine tests from Cell Trend labs in Germany which measure if you have autoantibodies attacking the beta-adrenergic and anti-muscarinic/cholinergic receptors in your body. I suspected that this was occurring in my case but these tests provided confirmation. My doctor felt they confirmed that I have "Autoimmune POTS" and autoimmune chaos in general causing many of my symptoms.

    I saw a Neuro (for a one-time consult) who ordered these panels from Mayo Clinic based on my symptoms. The PAVAL Panel is for paraneoplastic autoantibodies which can mean there is a hidden cancer but can also be more autoimmune chaos without any cancer ever being found. But knowing you test positive, allows you to have specific cancer checks to rule this out. I tested positive for calcium autoantibody that links to lung cancer and this was valuable info to have.

    MuSK was to rule out myasthenia gravis and GAD65 actually relates to several diagnoses. One is diabetes (which I do not have) but it is also the autoantibody for SPS (Stiff Person Syndrome), and correlates with dysautonomia (which is a major problem for me). It attacks the enzyme that converts glutamate to GABA and we believe it is why I had such an incredibly insane startle reflex prior to IVIG which is now completely gone.

    Myasthenia Gravis is a separate illness and from my understanding if someone had MG, they would not have CFS and would have been misdiagnosed.
     
    valentinelynx and overtheedge like this.

See more popular forum discussions.

Share This Page