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ME/CFS: A disease at war with itself
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What labs / tests are you POSITIVE for ?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by xchocoholic, Nov 1, 2011.

  1. xchocoholic

    xchocoholic Senior Member

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    Hi All,

    I'm curious about what labs or tests pwc's are positive. I heard for years that my labs
    were normal from my regular gps but found out a few years ago that they just weren't running the right tests.

    Can you list your's so we can give doctors an idea of what to look for ? Please state your condition too as this should help others .. Thanks

    I'm totally disabled with ME and I'm positive for ...

    Positive for elevated CFS viruses - EBV, ?,? (called CFS panel in 1990 and 2006)

    Failed bicycle test within first minute or two
    Left bundle branch block
    Nocturnal myoclonus
    Rhomberg / ataxia (1990-2006 resolved via gf diet)
    White lesions on brain
    Orthostatic intolerance
    POTS
    celiac
    Hiatal hernia, colon polyps, gerd, gastroparesis (resolved via diet ?)
    thyroid antibodies
    gluten, dairy and egg white antibodies
    Adrenal fatigue
    high eosinophils
    Hyperinsulinemia
    candida
    dysbiosis
    Low pregnenolone
    Low dhea
    and a wide variety of nutritional deficiencies including D, E, B12, iron, chromium

    Most recent - paget's, lung scarring, 2 hour seizure (probable tonic clonic + lungs stopped sporadically)
  2. justy

    justy Senior Member

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    Hi, i have low Ferritin which years of supplementing has made no difference to. I also have low glutathione, carnitine, co q 10, magnesium, zinc, manganese and selenium.
    I have classic mitochondrial abnormalities as per Acumens mito function test plus toxins stuck onto mito cell membranes. and high cell free DNA My gene for SOD ase is partially blocked ( all in all i have very low antioxidant status and supplementing doesnt seem to help)
    I also have low normal T4 which doesnt budge on Thyroxine
    I have a fibrotic band in my lung as shown on CT scan.
    I usually have low normal white blood cells
    My TSH fluctuates between 3.5 and 1.5 but i dont have hashimotos.
    My test for coeliac said lab ranges 0 - 10 normal, mine was 10 so im normal but 11 wouldnt have been (or 10.1 i presume) tested positive on skin test for gluten sensitivity as a child, labelled "borderline coeliac even though there is no such thing.
    My b12 serum levels bordering on low.

    I always ask for a print out of my test results with lab ranges as so often doctors dont tell you the real result. My ferritin has been 5 for at least 10 years but it was only when i pointed it out that they started to be concerned. My TSH was above normal ranges 5 years ago and they never mentioned it, same for when my white cells kept creeping lower and lower.
    All the best Justy.
    xchocoholic likes this.
  3. globalpilot

    globalpilot Senior Member

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    Low ferritin, WBC and RBC
    Low CD4, CD8
    Enterovirus in stomach biopsy tested by Dr Chia
    Low glutathione
    Elevated nagalase (2.1)
    ACUMEN/biolab in the UK - low ATP production , poor translocator function, cell free DNA, DNA adducts, poor SOD function

    Of course there are many many things not tested for that I would like such as NK cell function, regular viral testing.
    xchocoholic likes this.
  4. xchocoholic

    xchocoholic Senior Member

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    Thanks for the replies. I still have to google some of the info you gave but at least it's here so I/we can.

    I didn't realize when I posted this thread that it would help us decide what tests we should ask for too. Once I google the ones you've listed, I'll be asking my doctor for these.

    Hopefully, we'll get some more responses too and can find some patterns in this.

    Justy, I hope you're gf or have at least tried the diet to see if if helped you. All those nutritional deficiencies are a given in celiac disease. But as you know, me too, it's hard getting them back up.

    take care ... x
  5. Francelle

    Francelle Senior Member

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    -Mycoplasma Pneumoniae positive 2 + years
    -Borderline Legionella titres
    -Active CMV
    -SPEP - serum protein electrophoresis, abnormal band/s
    -ANNA - Anti Neutrophil Nuclear Antibodies - significance unknown
    -Neutropaenia - low Neutrophils most of the time
    -Selective deficiency of immunoglobulin G (IgG) subclasses
    -Abnormal Oesophageal Manometry - oesophageal paralysis
    -Gastric Emptying Scintigraphy -Gastroparesis (severe delayed gastric emptying for solids)
    -Failed Rhomberg test
    -Failed standing test for POTS (postural orthostatic tachycardic syndrome)
    -Positive observation for Fasciculations - muscle twitches

    That's all I can think of at the moment without looking up my results.

    - I have had none of the range of CD antibodies tested.
    -IENFD Biopsy (intra epidermal nerve fibre density) has not been done to confirm existing peripheral neuropathy symptomology.
    xchocoholic likes this.
  6. taniaaust1

    taniaaust1 Senior Member

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    ohhh lol.. you shouldnt have told us that.. here I was thinking you'd asked us for that very reason so thinking just how smart an idea it was (and wishing I'd thought of posting something like this myself).
    ...................................................

    I'd love to see peoples actual results too for some of those tests if they didnt mind sharing
    ...

    My abnormalities have been (I'll post my worst results)

    - Severely failed the Rombergs test (instantly went down)
    - EEG abnormalities (non specific ...wrong brain wave state when my eyes are shut etc, "No normal alpha activity")
    - Rhythmic Myoclonus
    - Unequal pupils and response
    - Hyper-reflexia
    - Postive Vision Contrast testing (biotoxins)
    - Frozen shoulder under 40 years (specialist said causes of this at this age is usually autoimmune related)
    - Early osteroarthritis from 35 years (neck, mid back and lower back)
    - IBS (diagnosed by gastro)
    - Eye specialist said my eyes are aging (Im only 40, so now I need glasses)
    - HPV
    - Aspergers (offical diagnoses)
    - Developed two leaky heart valves (I'd read that that usualy goes with Mitral Valve Prolapse)
    - POTS (ive worked that out from taking my heartbeats, I meet the diagnostic criteria)
    - CMV IgG antibody detected
    - Toxoplasma IgG antibody detected
    - Strep B (its gone now it was treated)
    - Staphylocci in my nose (its gone now it was treated). Ive also had a lot of other issues too with staph infections
    - DQ2/DQ8 postive (I carry the genetics for celiac disease thou my blood tests dont show I have it)
    - I had bad mono
    - strange rashes/skin discolourations
    - very high fevers


    High
    - High Adrenaline (lab normal was 0-0.08 my result was 0.13 )
    - hyperinsulinemia
    - high AST (lab normal 0-40, my result 46)
    - Hypercholestemia (ideal <5.5, my result 6.7)
    - Homocystine was in normal range but specialist said was too high at my level and should be lower and indicated issue so hence got tested for MTHFR polymorphism due to that .. and tests then showed I have MTHFR polymorphism
    - I had too much estrogen .. that's given me polycystic ovulation syndrome
    - high TP (lab normal 65-80, mine 81)
    - very high copper on hair analyses
    - high Chloride (lab normal 98-109, my result 110)

    Low
    - low sodium (lab normal 136-146, my result 135)
    - hypoglycemia, low glucose (lab normal 3.0-6.9 my result 2.4)
    - low testosterone (before I got ME I had high testosterone)
    - low cortisol, 24hr urine test (lab normal 50-350, mine 48), cortisol dont tend to raise when stressed or with exercise
    - low Anion Gap (lab normal 10-18, mine 8)
    - low M.C.H.C. (lab normal 315-355, mine 314)
    - APTT (lab normal 26-39, mine 24)
    - Prothrombin Time (lab normal 13-15.5, mine 12.9)
    - Ferritin, low/no iron storage (strange as i eat meat or eggs 3x daily)
    - molybdenium deficiency
    - Severe vitamin D3 deficiency (lab norm 60-160, mine 31) (it dropped more with daily supplementation) (my D2 levels strangely thou are good. Where's my D3 going?).

    Imbalances
    - lots of my mineral balances are messed up.. high Calicum to Phosphorus balance, high (offchart) Calicum to Potassium, high (offchart) calicum to Magnesium, low Iron to copper balance, low zinc to copper, low sodium to magnesium.
    - BP 70/55 (low) to 156/138 (high) orthostatic hypertension .. completely dysregulated BP
    - Imbalance LH/FSH (reversed ratio)

    On hair analyses there was an additional trace element I was well beneath reference range for... Germanium .. (it says thou However deficiency signs and conditions have not be documented in humans so therefore clinical significance cannot be placed on low germanium level at this time). Who knows.. maybe ME is a deficiency in something they dont know about yet!!

    Borderline.. <White cell count and <Neutrophils (always borderline or close to it)
    >ESR (mine goes up one every year so next time Im tested it will high)

    .......

    Thou not tested, im sure I have low glutathione as undenatured whey helps me.
    xchocoholic likes this.
  7. xchocoholic

    xchocoholic Senior Member

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    Thanks again for the replies. I'm shocked by all the different positive lab and test results we have. The only positive results I really knew about were the ones for leaky gut and Lyme. Please keep these coming ...

    I still need to google these but I've been under the weather for a few weeks now. My digestion is off again ...

    Hi Tan,

    hope you're having a good day .. No problem here realizing that I'm not as smart as I once thought I was ... The people on this board and a few others I visit are amazing ... I never leave here feeling as smart as I did when I logged on ... lol ...

    great idea about posting the values too. But no rush ... it will take me awhile to find mine ...

    tc ... x
  8. Mya Symons

    Mya Symons Mya Symons

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    positive Sjogren's antibody test (not high enough for diagnosis)
    positive ANA (not high enough for diagnosis)
    positive C-Reactive protein (not high enough for diagnosis)
    Hashimoto's disease (positive antibodies)
    Low T-Cells
    low red blood cells
    High B-Cells
    MRI and Xrays show osteoarthritis
    colonoscopy shows very distended sigmoid colon
    chronic sinus infections and sinusitis
    chronic bladder infections
    some damage from acid reflux
    ultrasound and mammogram - cysts on breasts and ovaries
    uterine scar tissue (before removed)
    eye exam because of floaters showed hardening of gel substance in eyeballs (can't remember specific name)


    I have not had any of the tests specifically geared towards CFS (since mainstream doctors don't think it exists as a non psychological disease)
    xchocoholic likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    IgG antibodies to ebv and cmv, neg hhv6- famvir, also had chickenpox which helped kickstart cfs
    mycoplasma-neg
    Cpn- neg
    lymphocyte subsets- initially total lymphocytes high as well as most of the sub sets, improved with antivirals/famvir. cd8 indictive of ebv/cmv reactivation
    immunoglobulins- IgA high, IgG and IgM normal high
    Nk function- bond uni cfs study- poor nk function- some improvement with cycloferon
    lymphocyte function test- normal(so no correlation to nk function going by this)
    Many periods of neutropenia
    vit D borderline low- fixed with 50000iu tabs once a weel for a few weeks, now take 1 tab a month.
    cholesterol high which can indicate adrenal hormone issues which i found out later- non flush niacin helping, think will improve once adrenal issues are sorted.
    Total testosterone- upper 1/3 of normal range,
    Free testosterone - below range, improved to low normal with arimidex
    dhea below range- currently working on
    E2(estrogen) high normal range, now back to normal with arimidex
    progesterone below range- supplementing with low dose progesterone cream, helping with sleep
    cortisol- low normal range- improved with pregnenolone but had side effects from to higher dose for me, now retrying it again at much lower dose 5mg a day-helping.
    thyroid- TSH/T3/T4 normal, looking into reverse T3 tests as body temp still low and could be a reverse T3 problem which blocks effects of normal T3.
    Had chronic sinus issue sorted with ABX
    sleep study-neg to apneas and RLS although have sore legs at night if not medicated for it, slept very little but sleep i did get showed little deep slow wave sleep.

    Many of these i have improved with the help of my doc especially immune/viral stuff. Vit d was easily fixed with high dose supplementation. Currently working on hormonal adrenal fatigue issues and always working on sleep. I think thats most of them that i can think of, others i wont mention that was negative to.

    cheers!!!
    xchocoholic likes this.
  10. xchocoholic

    xchocoholic Senior Member

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    Bumping this because I'm tired of hearing that all of our labs are normal.

    Tc .. x
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I hadn't answered cause when I got the right tests done, most everything was abnormal and it would take too long to document it here. In brief, the screwy aspects are: autonomic nervous system, coagulation, methylation, gut, high levels of systemic inflammation, viruses, intracellular infections, immune system, sleep study, circulation, ANS and low blood volume induced cardiac function....:confused:

    Sushi
  12. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    Lyme Elispot LTT (positive)
    Combined U+T wave
    VO2max 11.9 ml/kg/min: 52% of expected (severe disability)
    Total Antioxidant Capacity (high)
    Perforin mRNA Expression (high)
    Prostaglandin E2 (high)
    Soluble CD14 (high)
    IL-8 (very high)
    MCP1 (high) - also known as CCL2
    Yersinia IgG (positive)
    Bifidobacterium (absent)
    Norepinephrine (low)
    Glutamate (high)
    Oxytocin (low)
    Last edited: Jun 18, 2014
    xchocoholic likes this.
  13. Sea

    Sea Senior Member

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    Val do you have any info for expected VO2max? I have my VO2max and I know it's low, but I am having trouble finding info that would tell me an expected figure for my age.

    I've seen various charts that rate you in the category of athlete to very poor function but they all seem to vary from each other rather arbitrarily.
  14. Valentijn

    Valentijn Activity Level: 3

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    http://www.hhs.gov/advcomcfs/meetings/presentations/presentation_10132010_snell-stevens.pdf has a couple good charts, one of which is from the Americal Medical Association and is data used in determining disability by various organizations.

    AMA-VO2max1.gif

    AMA-VO2max2.gif

    So the relevant bit is the last row in the first slide: ml/(kg*min). And the 3rd column in the second slide: VO2 Max ml/kg/min.

    Expected VO2max is calculated based on your resting heart rate. Higher resting heart rate = lower expected VO2max. http://en.wikipedia.org/wiki/VO2_max#Estimation_of_VO2_max shows the equation: VO2max = 15 * maxHR/restingHR. Then actual VO2max is given a percentage of the expected VO2max.

    Hence expected VO2max varies a lot from person to person, and from clinic to clinic depending on how the resting rate is obtained. So it's better for people who have OI to get a resting heart rate while laying down, since they'll often have an elevated rate while sitting up.

    For example, my resting heart rate was 91 and my max heart rate was 168. My predicted VO2max would be 15 * 168/91 = 27.7. But my actual VO2max was 11.9 which is 43% of expected.

    But if we'd use my actual resting heart rate of 75, when not exhausted from travel and sitting upright in the waiting room for a while, my predicted VO2max would be 15 * 168/75 = 33.6. And 11.9 would be 35% of that.

    But the predicted values aren't very accurate, and accordingly the percentage of predicted value isn't very accurate. That's probably why actual values are used to determine extent of disability rather than the percentages of what's expected.
    Last edited: Jun 14, 2014
    Sea likes this.
  15. kermit frogsquire

    kermit frogsquire *****

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    Hi everyone,

    There seem to be several trends here.

    There are the patients that seem to have deficiencies, @globalpilot and @justy - I think this could represent malabsorption or other, but the deficiencies could definitiely account for other signs & symptoms. For example anion gap and U+T waves on an ECG, low Thyroxine/T4 can all be caused by deficiencies (either electrolytes or other nutrients).

    There seem to be a group with signs of inflammation - various markers are high. This group seems to be different to the deficiency group in other respects too - perhaps these two groups should be studied separately?

    Also many people seem to have had lots of tests that I think are absolutely meaningless - such as EBV and CMV IgG antibodies (it is normal to have these), or Acumens mitochondrial tests. Test for staph and candida are also very questionable as are certain tests for Adrenal fatigue.

    Okay, here is my list, only persistent abnormalities shown.

    Elevated ALT and AST (upto 90 and 65 - reference 0-40)
    Elevated Ferritin (upto 400 - reference 20-300)
    Elevated Transferrin saturation (upto 67% - reference 20-40%)
    Low Transferrin
    Elevated Tryptase, plus it varries wildly (10-16ug/ml - reference upto11.4ug/ml - normally tryptase is the same in the same person even if tested years apart)
    Low Complement C3 and C4 during flares, dropping by 35% from baseline.
    Elevated C1q immune complexes - 80 (reference 0-40)
    IgA deficiency
    High eosinophils (upto 1.1 x10^9 - reference 0.4)
    Hiatus Hernia + GI reflux
    IgG + IgM HHV6 antibodies constantly (1:320 and 1:80)
    Negative IgG EBV and negative CMV IgG.
    My bodymass index is 22.5 and always has been. (This is important because fat people have higher than normal liver enzymes due to fatty liver. Also people with anorexia or low weight can also have lots of abnormalities.)
    On exercise stress testing I collapse after just a couple of minutes reaching over 100% maximum HR and very low VO2Max. (VO2max testing is not accurate unless a person reaches at least 90% maximum HR)

    Has anyone else had their Tryptase measured?
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i wouldnt say ebv/cmv tests are useless. Atleast it indicates u have had the infection. Then if one shows immune dysfunctions in a few tests then it is quite likely that those viruses could reactivate and be an issue for someone. I guess its an educated guess if these viruses are active and the only true way to see if its an issue is then to try and treat it. Sometimes these immune tests can indicate the treatment is working.

    Myself, i had elevated total lymphocytes for quite sometime which my doctor followed, subsets test showed elevated cd8 t cell which is common in ebv/cmv. late i had an nk function test which was also quite low, so this would make it possible for ebv/cmv to reactivate. So after treating with antivirals, these total lymphocytes and cd8 t cells started to come down as my symptoms improved, i still dont have cd8 down to normal but lower then pre antivirals. After 12 months of antivirals i stopped treatment which showed total and cd8 lymphocytes again elevated and came down once again with treatment.

    So i wouldnt say the ebv/cmv igg test is useless, but has to be combined with other tests to indicate as possible active infection. This is how we had to do it in australia. In the USA they measure igg titres and if over a certain number can indicate possible viral reactivation, these tests werent available to me.

    I also think its possible that even treatment with antivirals with no improvement doesnt mean those particular viruses are an issue but maybe overshadowed by another infection??

    I guess testing really just rules out other illnesses and only a few tests like nk function can help with an me/cfs diagnosis, but there is other illnesses that have low nk function??
  17. kermit frogsquire

    kermit frogsquire *****

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    In a recent research paper by Dr. Carmen Scheibenbogen, it was found that those with low/absent EBV antibodies actually were more likely to have viral activation. Therefore, that is why I said that a positive IgG EBV test is useless.

    A positive test neither includes, nor excludes EBV because 95% of the population have EBV antibodies. Also, the absence of antibodies does not exclude EBV either. So whatever the result, the test doesn't add any value and certainly a positive result means least of all.

    Low NK function is another tricky one because everything from a cold to a little bit of stress can affect the result massively. This is why the reference range is something like 8 to 200. This is why it is often ignored. My NK function was 3, but I didn't mention it because of the problems with the test.

    What is important is symptomatic response to antivirals, if they work, then they are helping, but I don't think tests of IgG antibodies can guide who they might help.
    SickOfSickness likes this.
  18. justy

    justy Senior Member

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    Just to say @kermit frogsquire that I look like I am in the deficiencies 'group' because I have never had anything else tested until now.

    I now also have low cortisol and very low DHEA (saliva adrenal test)
    High Beta glucoronidase and low chymotrypsin on Genova CDSA.

    I am also now awaiting extensive testing results from De Meirleir in Belgium and we will then see if I have inflammatory markers as well.

    The interesting thing though about those of us with deficiencies is that they are either not sorted out by supplementation, or if the levels do rise after supplementation it makes little difference to the M.E symptoms.

    All the best
    Justy

    PS I will post results from De Meirleir when they become available.
    golden likes this.
  19. kermit frogsquire

    kermit frogsquire *****

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    It will be interesting to read De Meirleirs tests.

    The thing with ferritin is that even if iron levels are completely absent, if there is inflammation present the ferritin will still be in the normal range because inflammation tends to increase it. So a low ferritin (under the normal reference range) tends to mean little if any inflammation as well as deficiency. For example, someone who is completely anemic who also has inflammation will often still have a ferritin of 50 or 60 (reference 20-300). Another clue that the ferritin represents inflammation is if it goes up and down with symptoms - for example my ferritin goes from 137 to 400 and back again depending on how ill I feel, quite obviously my increase in ferritin does not represent iron at all, but inflammation.

    There does seem to be a definite group with low ferritin, I even know a male ME patient who eats red meat who has this finding which is very strange (male patients do not have menses so can't lose iron) - why it won't go up I don't know. It is especially strange because once a person has stored iron, it is very difficult to lose. Women who have menses need to constantly absorb iron, but adult men and post-menopausal women shouldn't really need any. (vampire bats and excessive loss of blood from blood tests aside)

    My question is therefore, is there perhaps a loss of blood from the bowel in this group of patients? Have you ever done a fecal occult blood test, Justy? Coeliac disease can cause minor intestinal bleeding. The other option would be some form of parasite taking blood (hookworm?) - this could account for deficiencies in general. Also I wonder if you have anti-paretial cell antibodies (low stomach acid) given your deficiencies.

    Supplements are not very good at raising iron levels because inorganic iron is not well absrobed. Red meat and black saussage are good sources of heam iron which are very well absorbed. Also eating iron with lots of vitamin C is good as well because Vitamin C is needed for absorption.
    Last edited: Jun 18, 2014
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think we are both agreeing on the only certainty to know if one has an infection or not is to just trial antivirals. I think i would still like to see some type of immune dysfunction say lymphocytes, neutrophils even nk function, maybe tested several times over a few months to confirm the results arent a one off or from a cold.

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