All the different test's, can we list them?

Sushi

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This is a great idea! However, we may need to figure out a way to organize it as there are hundreds and hundreds of tests, some may be relevant to all, many relate to a specific body system (like the immune system or the gut), and each test is only going to be available at some labs and in some countries.

Some need a doctor's authorization, some don't. I know I have folders full of lab tests and while they may well be interesting to some, I am not up to listing them all as that would involve a lot of very detailed typing -- stuff like CD3-CD16CD56+....and half the tests I have had, I don't understand what they are testing for except in very general terms.

Any ideas how we could organize a guide to tests?

Best wishes,
Sushi
 
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wiki? :)

am happy to set up and install a wikipedia-style wiki (i.e., with a talk page and a history of all edits/version) just about anywhere for us to edit and contribute to...

i can set up a separate domain, if that makes sense and if you have an idea for a good name for it :)

the content and knowledge on this site could fill an encyclopedia, but is very hard to find in discussion format.
 

taniaaust1

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Any ideas how we could organize a guide to tests?

Best wishes,
Sushi
One handy way the tests could be broken up and organised is by listing them under what kind of specialist or department one is most likely to have to go to, to organise to get the test done. That way anyone who is going to a certain specialist could just take a list of the tests coming under that catagory with them as a guide and also would help easily find all the tests relating to certain symptoms too together. (arranging things too in alphalbetical order once in their certain catagories would help too).

eg
General/ Medical Practioner (could list all the tests "most" doctors would know about and be willing to do).
Cardiologist (heart)
Endrocrinolgist (hormones)
Gastroenterology (bowel /stomach)
Gynocologist
Haematological (blood)
Urologist (male/female urinary tract, male reproductive)
Allergist/Immunlogist (allergy/food issues)
Exercise physiologist
Dermatologist
Ambulatory/orthostatic (issues walking/standing) specialist
Psychologist
Naturopath
etc

What happened to the list of tests which were being put together at PR before?
 

Sushi

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One handy way the tests could be broken up and organised is by listing them under what kind of specialist or department one is most likely to have to go to, to organise to get the test done. That way anyone who is going to a certain specialist could just take a list of the tests coming under that catagory with them as a guide and also would help easily find all the tests relating to certain symptoms too together. (arranging things too in alphalbetical order once in their certain catagories would help too).
Or, alternatively, instead of types of specialists, grouping the tests according to the type of test, i.e.
gastric/digestive, neurological, cardiac, immune system, pathogens, toxins, etc.

I am suggesting this because those of us who see an ME/CFS specialist get almost all our tests from one doctor. It seems, from many of our experiences, that "conventional" specialists, if they do not treat or are knowledgeable about ME/CFS, are not going to prescribe the relevant tests for us no matter how good their reputation is in their field.

For instance, I have been to many cardiologists, but not one of them suggested the tests that proved relevant--the Tilt Table for instance.

Sushi
 

taniaaust1

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I am suggesting this because those of us who see an ME/CFS specialist get almost all our tests from one doctor.
You are extremely lucky there.. "most" of us cant get all the tests throu one specialist even throu ME/CFS specialists (I say that as Ive had 5 different ME/CFS specialists and they all have had their own areas in it in which they seem to specialise). Many dont even have a me/cfs specialist let alone have a good one.

I have been to many cardiologists, but not one of them suggested the tests that proved relevant--the Tilt Table for instance.
That's an example of why Ive made the suggestion I have... a cardiologist is the wrong specialist to go to for a tilt table test but most when they think of "heart" being affected think its a heart specialist they go too.. but that isnt the actual problem area.. our hearts are in good condition hence its not a cardiology issue at all.

Nearly all cardiologists wont know about POTS or the area of "autonomic dysfuction" . (Ive been to 3 cardiologists and none of them had ever heard of POTS and when I asked why and told them what it was.. they said it wasnt their area at all due to its autonomic dysfunction isnt the area of a cardiologist).

One kind of specialist who can specialist in autonomic dysfunction is "ambulatory specialists" (who's specialitity is in walking issues and issues affecting that... they often can specialise in orthostatic issues cause that's their field. Some hospitals also have autonomic clinics.. many have ambulatory clinics.

Most people who are new to ME/CFS (by new I mean have had less then a couple of years) dont have any idea of where to go for what kind of test (what tests can they ask their normal doctor for to which he is likely to agree with?) and are very lucky if they've managed to find a good "one stop shop" doctor... even many of us old timers just dont have one of those "one stop shop" doctors.
 

taniaaust1

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here's an example of what im suggesting which I think would be helpful to most with the doctor situation also the way it is (they still end in system grouping like this except the ones any doctor would do).

I just put this quickly together below but it hasnt got all the tests on it yet as I dont know what catagory many of them come under and I havent put them all in yet. (Im doing a copy of it all for myself anyway as i'd love to set up a help site one day and this just is what i think would prove most use to the average person who is new to ME/CFS and seeking these tests)
 
General Medical Practioner

AIDS test
Antinuclear antibody (ANA)
B12 and red blood cell folate (or serum folate may be done if fasted overnight)
Blood Biochemistry (Glucose, sodium, Chlor. Pot. Bicarb, urea, Creat, Phos. T. Prot, Bili, AST, ALT, Calicum etc)
CBC (complete blood count)/Routine Haematology (Platelets, White cell counts, RBC, PCV, MCV, ESR, Hb etc)
CRP (C-Reactive Protein) (Check for inflammation in body eg infection, lupus, vasculitis and rheumatoid arthritis)
ESR (erythrocyte sedimentation rate, marker for inflammation) (may be abnormal in ME)
Folate levels
Glucose
Iron Studies (iron, transferrrin, transferrin sat and Ferritin ... in ME Ferritin is commonly low)
Lipid Studies (cholestrol may be on biochemistry test if high.... Total chol., HDL Chol and LDL chol., triglyceride)
LFT (Liver Function test AST/ALT results in biochemistry arent a good view of liver function as those are only biomarkers).
Magnesium (if it isnt in the blood biochem).
general Microbiology (by nasal swab) (Toxin releasing staph often found in ME/CFS re Newcastle Uni reseach)
Rheumatoid Factor
TSH and T3/T4
Urinalysis or Microbiology (urine)
Vitamin D (25-hydroxy and 1,25 dihydroxy cholecalciferol.. in ME one may be normal while other low)






Allergist or Immunologist
- conducts the diagnosis and treatment of allergic conditions
Celiac Disease tests -
coeliac disease autoantibodies (test 90% accurate)
- HLA DQ2/DQ8 test (negative rules out celiac disease)
- small bowel biopsy (if positive to HLA DQ2/Dq8)
Lactose intollerance testing
Fructose intollerance testing

Ambulatory or Orthostatic Specialist
Tilt Table Test (eg POTS, NMH, narrowing of the pulse pressure, orthostatic hypertension all found in ME)
Poor mans tilt table test
24hr Holtler Monitoring with or without BP monitoring

Anesthesiologist

- treats chronic pain syndromes

Cardiologist
- treats heart problems
Exercise stress Test (exercise ECG)
Tilt Table Test
Ultrasound on heart
Holter ECG (echocardiogram)

Dermatologist
-treats skin issues
Skin Inspection (eg Mastocytosis if hives and skin flushing and other skin symptoms being experienced)

Endocrinologist
- treats hormonal disorders
Androgen studies (DHEA-sulphate)
Cortisol - Diurnal Cortisol levels
24hr. Urine free Cortisol
CT of adrenal glad to check for atrophy. (May be abnormally small).
2hr Glucose Tolerance Test with Insulin (tested with glucose or food.eg hyperinsulinemia)
5Hr Glucose Tolerance Test with Insulin (eg Insulin curve)
Short Synacthen Test (eg blunted response in ME) (checks functioning of the adrenals - cortisol)
Testosterone (free testosterone) (both boys and girls..often found to be low in ME/CFS)
Thyroid autoantibodies (to exclude active Hashimoto's disease)
Ultrasound of Thyroid Gland (May be enlarged due to poor thymus function and inflammation in absense of hypothyroid).
24hr urine biochemistry (noradrenaline, adrenaline, dopamine. ME people may find levels abnormally high).

Gastroenterologist
- treats stomach/bowel disorders
Celiac Disease Testing -coeliac disease autoantibodies (test 90% accurate)
- HLA DQ2/DQ8 test (negative rules out celiac disease)
- small bowel biopsy (if positive to HLA DQ2/Dq8)
Sigmoidoscopy: May show weak rectal muscles, explaining continance problems

Gynecologist
- treats diseases of the female reproductive system and genital tract.
Endometritis is more common in ME.

Hematologist/Oncologist
- treats diseases of the blood and blood-forming tissues (oncology including cancer and other tumors)
Coagulation studies (INR, Prothrombin Time, A.P.T.T .... ME patients often have hypercoaguation)
 

Internal Medicine Physician

- treats diseases and disorders of internal structures of the body.

Infectious Disease Specialist (Epidemiologist)

Neurologist
- treats diseases and disorders of the nervous system.
Lumbar Puncture (is abnormal in some ME cases eg Cytokines in CSF and low GM-CSF. Very raised Ventricular CSF Lactate)
Rombergs Test (high rate of postive tests in ME)
fMRI (functional MRI) best done in conjunction with a qEEG. (abnormalities may be found in fMRI with ME)
qEEG (certain abnormalities in ME)
SPECT (Single Photon Emission Computed Tomography)
BEAM (Brain Electrical Activity Mapping)
Observational neuro testing (eg can you walk in a straight line)
PET scan
Brain or spine xray
Reflex testing (Hyper-reflexia commonly found in ME)

Obstetrician
- treats women during pregnancy and childbirth
MTHFR polymorphism test (hypercoagulation issues more common in ME. MTHFR problems have higher risk of preventable miscarriages and preventable deformity). Up to16% of general population have it which may be higher in ME/CFS communities, this also affects the methylation cycle). Can be tested by a Thrombophilia genotypes test

Naturopath

Hair tissue mineral analyses (minerals/toxins/balances)
Food Intollerance Testing





Ophthalmologist
- treats eye defects, injuries, and diseases.

Oral and Maxillofacial Surgeon
- surgically treats diseases, injuries, and defects of the hard and soft tissues of the face, mouth, and jaws.

Otolaryngologist
(Head and Neck Surgeon) - treats diseases of the ear, nose, and throat,and some diseases of the head and neck, including facial plastic surgery.

Pathologist
- diagnoses and treats the study of the changes in body tissues and organs which cause or are caused by disease

Psychiatrist
- treats patients with mental and emotional disorders
Psych Evaluation
Depression Tests
Anxiety Tests

Pulmonary Medicine Physician
- diagnoses and treats lung disorders.
Bronchoscopy
Chest xray



Radiation Onconlogist

- diagnoses and treats disorders with the use of diagnostic imaging, including X-rays, sound waves, radioactive substances, and magnetic fields.

Diagnostic Radiologist
- diagnoses and medically treats diseases and disorders of internal structures of the body.

Rheumatologist
- treats rheumatic diseases, or conditions characterized by inflammation, soreness and stiffness of muscles, and pain in joints and associated structures
Fibromyalgia pressure points examination

Somnologist/Sleep Specialist

Sleep Study (eg Restless leg syndrome, sleep apnea, etc)



Urologist
- diagnoses and treats the male and female urinary tract and the male reproductive system

Virologist
- studies viruses and viral diseases

Naturopath
Hair analyses (minerals/toxic elements/mineral balances)

Can do at Home Tests

Blood Pressure Monitoring (low BP, orthostatic hypertension, NMH all found in ME)
Food challeges (with elimination diet) (food issues common in ME)
Poor mans tilt table test. (heart rate taken for POTS or if BP is taken to, can be used to pick up orthostatic BP issues of ME). (warning... have another present when doing this test)
Porphyria test - Leave some urine out in the sun for a while to see if it under goes strange colour changes (purplish) .. as this can pick up some Porphyria cases (some have said that some CFS cases are undetected Porphyria)
Pupil, one being larger (Adie's pupil) (found in ME)
Rombergs Test (postive test found in ME)
Sluggish Pupil Response to changes in light. (Not pen torch to the eye). Lights Dim, Lights On. (found in ME)
Temperature low after exertion or fevers (common in ME)

Others

KPU test from Kryptopyrrole.com
Visual Contrast Sensitivity Test (Shoemakers neurotoxin test) www.chronicneurotoxins.com
 

triffid113

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What I was hoping for is a list of sites or some way to FIND these tests:
These are the sites of some of the tests I find exceptionally important:
Other important tests from www.lef.org/Vitamins-Supplements/Blood-Tests/Blood-Tests.htm (member prices listed):
  • homocysteine: cheap estimate of methylation status: $64
  • Chemistry panel with CBC (do not underestimate the value of yearly basic screens...this one found a thyroid problem for me! however this test no longer contains TSH so you need to order that separately): $35
  • ESR (one doctor says CFS/ME failis test)
  • ANA (overall indicator of auto-immune):
  • thyroid panel (TSH, FREE and TOT T4, FREE T3, REVERSE T3, the two thyroid antibodies)
  • RBC Mg (low on this causes glutamate sensitivity and neurological problems)
  • CRP (indicator of inflammation...indicator of heart health)
  • CoQ10 (needed to make energy, your body can't make enough if you have thyroid issues)
  • l-carnitine (needed to use fat for energy...very important for heart health)
  • Vitamin D (cancer avoidance, also prevents seasonal affective disorder)
  • thyroid panel or individual tests for: TSH, T4 TOT, FREE T4, FREE T3, reverse T3, APO, TPO (these last two are the thyroid antibodies) (energy! TSH 2.0 or above means hypothyroid - ignore lab range)
  • ferritin (iron stores)
Sorry my connection is too slow to bring up each f these labs for prices.
Depending on your genetics, you may also find a plasma ammonia test useful: www.privateMDlabs.com
 

triffid113

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Does anyone know the website to obtain the SAMe test that Rich always advised? My father is in kidney dialysis now which filters a lot of things out so I don't think the homocysteine test will be at all indicative of his SAMe levels and he will need the more expensive test.

Does anyone know if there is a BH4 test? I was interested to see there is a KPU test, but if your deficiency is enough to mess up your kidnies but not enough to cause KPU, does anyone know if there is a test to detect it? I have 3 genes that cause insufficient BH4 and my father may have the same (gene test ordered but not in yet). BH4 is required not
only for metabolizing phenylalanine, but also t make urea and dopamine!

Thanks!
 

soulfeast

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I am at dummy stage with the CFS specific testing.. can someone help me with tests specific to CFS such as the immune panels? ROS?? I saw a list somewhere in the past and cannot find it. NK panel? T Cells? I'm trying to figure out where I am in all of this.. I am having labs runs specifically for mitochrondrial issues as well. Thanks so much!
 

antares4141

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The below tests would be more for somebody conducting a study than an individual doctor diagnosing in a single patient With the goal of finding a set of verifiable conditions that could lead to a firm diagnosis of cfs.

50 years ago they were able to observe a direct correlation between Celiac disease and gluten. What baffles me is how they achieved this with their relative to today primitive technology. Maybe they saw the pathology post mortem? So my thinking we should be doing this with CFS sufferers also

Careful tracking of statistics of cfs patients with an enphsis on toxic expousers occupationally and otherwise, exposure to moldy buildings, deaths by suicide.

Elaborate toxicological screenings that don't just stop at blood work but look for neurological and immunological anomalies consistent with these types of injuries.

Careful examination for infections, 15 years ago my mri showed a mass in my sinus, I was told they were common and benign.
Examining patients that have suffered for more than 10 years as opposed to those that just took ill in the hopes some pathology that wasn't apparent than would be now.
eeg's, mri's, pet scans, antibody assays, out of the normal blood assays maybe focus on some possible type of systemic infection, laparoscopies into the digestive track and lungs and sinusis, biopsies on said also. Tests that look for endotoxins or mycotoxins or dna associated with mold and bacteria and viral infection.

B. Follow up on "all" the "plausible" leads, like mold and food sensitivities specifically to statistics (is there a pattern of mold/food sensitivity and cfs). blinded test's to confirm or refute them. Careful noting of physical symptoms that can be observed & are associated with exposure to offending food's runny nose, coughing up flem, bloating, high heart rate low blood pressure, diarrhea, chronic yeast infection in the backend private area.
Mold exposure maybe an eeg/mri/pet to look for anomalous brain activity. Do it for people that are already living in (can't afford to move) moldy buildings. That way their is no ethical concerns with purposely exposing someone to mold. Statistics that might show a correlation between severity of illness and how moldy the dwellings they reside in are.

Develop some kind of cognitive stress test where the stressor would be low concentrations of chemicals like perfume or a drug like pot. The trick would be to find a way to measure the effects on a normal person than compare those to one with cfs.

Robert Christ
 

taniaaust1

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I am at dummy stage with the CFS specific testing.. can someone help me with tests specific to CFS such as the immune panels? ROS?? I saw a list somewhere in the past and cannot find it. NK panel? T Cells? I'm trying to figure out where I am in all of this.. I am having labs runs specifically for mitochrondrial issues as well. Thanks so much!
There is a list of tests for ME/CFS people eg NK cell function and the other abnormalities sometimes found in us in the Canadian Consensus Document. There is a link to that document on the "SA CFS society" home web page (if one scrolls down a little its on the left).
 
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After a nap I will read everything above, but I have an appointment at the Endocrinologist office tomorrow. I asked him to run a DHEA test and he declined saying that low DHEA would not cause fatigue.
How do you convince a doctor to run the test you want?
He has run some tests on me, all of which came back in the normal range, including:
TSH
Free T4
Basic Metabolic
Testosterone LC/MS/MS
Prolactin
Luteinizing hormone
FSH
Sex Hormone Binding Globulin
Albumin
Cortisol
 
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Where can you have all those tests done in toronto. Am new to this forum hand suffering for 4 years. What a life!!!!
Is there a group meeting in toronto. Would,love to meet people who understand that my fatigue is real and will not go away with one good night of sleep. It s very hard to have friends ... Who really understand.. And doctors who don t blame depression for all your unexplained symptoms.
 

roxie60

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Welcome Nanou. Many includng myself understand the issues and frustration you are facing. Life is made harder, friends are hard to keep and interact, Drs can be the utmost frustration and lack of support. I have found many here I know understand. Sorry I cant help with the Toronto info but I'm hoping someone here can get you connected with some local support. I recently found a CFIDS/FM group and am so grateful. I can walk into the room and it is so refreshing that each and everyone gets 'it'. My best wishes for you finding the road to recovery for you.
 
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I would add fMRI (functional MRI).

I don't think this test was available when the Canadian Consensus Document was written. Many believe it is better than SPECT or BEAM, and best done in conjunction with a qEEG.

Yes and nowadays some are doing an upright MRI - this can show the reduced blood flow to the brain on standing due to blood pooling or low blood volume or both - these are becoming available now.

Also I would suggest these useful tests:

POTS/OI testing - very few docs know how to do this properly ( in fact many have never even heard of it) but POTs now being tested for by many specialists - you do need to find a doc who is knowledgeable in it. Many with ME think they do not have it - but until you are actually tested you do not know for sure. Most docs will respect a report showing a 20mmHg drop in your systolic blood pressure on standing so this is one easy test to get in your file. [Just make sure the testing does not involve and old fashioned TTT - the 45 mins upright that make you faint and provide no real evidence - you need regular blood pressure measurements and upright time limited to 10 minute bursts. You also need to be rested at the start so it is a resting BP you are starting from.]


Blood Volume testing

Low blood volume is often cited as a symptom of ME but rarely tested for; again showing your doctor a form indicting you only have say 4.3 litres of blood in your body instead of the requisite 5-6 litres is some proof positive that something is seriously wrong.


Beighton's score for hypermobility. Joint hypermobility is listed in the 2011 International Criteria but does not get much coverage. Many people who are hypermobile - any dancers, gymnasts, athletes with frequent injuries? - do not realise they are as they have always been like that. You can get a rough indication on-line but need to see an informed specialist to get an accurate score.

Good idea to start this thread thanks

Ally