Tests

There is currently no universally agreed upon biomarker for ME/CFS. There are differential diagnoses such as lupus, RA, MS, adrenal failure or thyroid issues which can be screened for using standard testing and may explain symptoms. One study found only 5-8% patients find a reason for prolonged fatigue with testing.

For a comprehensive list of testing resources, see Test list.

Similar to many people with ME/CFS, I have explored extensive testing, both mainstream and alternative. This includes:

  • EBV & CMV (past exposure positive)
  • vitamin D, iron, b12. Each have been low at different times but generally normal.
  • thyroid testing (differential diagnosis). TSH, t3 and t4 are required. (my results were weird during onset but have since returned to normal)
  • autoimmunity- antinuclear antibodies are often elevated in ME/CFS patients. sRNA testing can specify if this is due to a known illness such as lupus or rhematoid arthritis (my ANA is transiently positive but non-specific). ME/CFS & POTS are hypothesised to be autoimmune.
  • SIBO lactulose & glucose breath tests – Stream Diagnostics $217 (positive)
  • lactose intolerance blood test- GP (positive)
  • skin prick allergy tests -immunologist (positive for dust, pollen, milk)
  • stool tests through GP for parasites (positive for blastocystis & diatomeba)
  • salivary cortisol & DHEA- $90-150 (flattened diurnal, non-measurable morning cortisol, high DHEA, linked to adrenal fatigue, ME/CFS & PTSD )
  • urinary 24hr cortisol (223, low range normal) -GP
  • 9am blood cortisol- GP
  • zinc taste test (naturopath administered, consistently low until recently)
  • iridology (gut aggravation, alleviated for a period after using digestive enzymes)
  • hair tissue mineral analysis (HTMA)
  • krytopyrroles- this test is not well substantiated, research is underway (negative)
  • Organic Acid urine test (OAT)- this shows metabolites for neurotransmitters, bacteria and yeast, as well as vitamins and minerals such as CoQ10. Cost $250-500 (showed excess oxalates, which led to dietary change for symptom management)
  • CIRS lood markers, including MSH, VIP, C4a, tgef-b and vasopressin ‘anti-diuretic hormone’ ADH. These measure breakdown in hormonal functioning due to cytokine inflammation from mycoplasma, lyme, mould or algae.
  • Ceruloplasmin.  Morley Robbins et al believe ceruloplasmin to be the best measure of zinc/copper issues. Ceruloplasmin is depleted by zinc or abscorbic acid supplementation. Mine was low. Significant as excess copper leads to low zinc and digestive enzyme deficiency.
  • RBC Magnesium- true measure of mag status. pending
  • borrelia, rickettsia, babesia, toxoplasmosis ‘lyme-like illnesses’- Australian Rikettsia Reference Lab- pending
  • POTS stand test, NASA lean test or tilt table testing for postural orthostatic tacycardia. (Cardiologists can diagnose this). See POTS page

As well as any number of standard thyroid, iron, electrolyte, celiac,  liver, kidney and other blood tests. My bloods shown cyclical neutropenia, transient mycoplasma infections which could be cross reactivity or lack of seroconversion, influenza, parainfluenza and other infections. I have scars on the inside of my elbows from the needles, and have subsequently began to have issues with having blood drawn.

There are additional specialist blood, stool and urine tests which can be used to pinpoint bacterial and viral contributions to ME/CFS. Bear in mind there are often multiple co-infections present (as the immune system is not functioning appropriately), some tests can be expensive and at times unreliable, and they are often not recognised by mainstream doctors or insurance companies.

  • IgG food intolerances. These change with time and are controversial- some critics claim they reflect food ‘tolerance’ only.
  • Secretory IGA [IgG1 and IgG3 subclass deficiencies increase risk of autoimmunity & CFS]
  • CPET exercise stress tests
  • Further to ADH, osmolality. These measures excessive salt excretion and the experience the skin becoming electrically conductive due to salt imbalance. It’s useful to compare in ratio ash/osmality
  • Mold- urinary mycotoxin. Considered less reliable, may show mycotoxins from food. Needs to be tested within hours/days of exposure. not well substantiated
  • HHV6 (and 7). This test is available on request from GPs. Herpes 6 combined with Epstein-Barr has been postulated to cause ME/CFS, when extended anti-viral treatment has lead to improvement of symptomology.
  • Parvovirus B1931 Bacteria

Research & experimental tests

  • In light of recent metabolomics studies, amino acid testing, such as that available through Drs Data, though it will likely take time until the identical and reproducible tests used in the studies are available.
  • Recent POTS studies suggest autoimmunity, and antibodies against the adrenergic and cholinergic receptors which control vasoconstriction. Examples are A1, A2, B1, B2, M1-5. Some commercial labs are accepting patient samples, this can be organised through  http://www.celltrend.de/ with some effort. See here for instructions & discussion.

The ICC consensus primer on ME for doctors has a full and extensive list of recommendations of tests. Here it is in all it’s glory. Note: some of these tests are only available in some countries with limited availability, for example there is only one lab which does ATP profiling worldwise and it is UK access only from certain practitioners. Additionally, each country has its own recommended testing for a particular illness, so doctors may not, for example, be willing to test for EBV & CMV in Australia unless there are signs of a current infection.

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See Herbs, Minerals & Supps and other for information on ME/CFS specific treatments.

See here for an outline of a CFS specialists testing regime, including an emphasis on heart abnormalities found in ME/CFS.

On Lyme

Lyme-like bacteria (borrelia and coinfections)has been found recently in Australian Echidna ticks (QLD, 2016) and historically in other studies dating back to the 1950’s. This is a controversial topic, with researchers who initially located borrelia species not receiving funding, and labs such as Australia Biologics who maintain we have borrelia in australia not receiving accreditation. The Australian Rickettsia Reference lab referred to above is recognised and covered by medicare but have stringent testing which may miss some cases.

There are multiple ‘lyme co-infections’, in particular, Chlamydophila pneumonia,  Mycoplasma and Coxiella burnettii have been associated with ME/CFS (ICC primer). Tests for Chlamydia Trachomatis/ Pneumoniae, Mycoplasma pneumoniae/ fermentans can take the form of DNA, serology (such as ImmunoBlot) IgG/IgM, immunology such as EliSpot LTT Borrelia.  There can be a high rate of false positives  (Australian Biologics) and false negatives (ARRL). Aus Bio tests range from $150-750 each, international testing such as that through Igenex in Germany can be thousands, and not recognised in australia.

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