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

[juniemarie]

I have been trying to keep a list of the various test's that are talked about here Some are associated with a particular protocol. Some stand alone but believed to be important part of figuring out your own bodies take on CFS,lyme,FMS etc.
I am going to list the ones I am aware of and the recommended labs.
If I have something wrong please let me know. If there are other important test could you post them please If they should be done at a certain lab, post that or if you know the cost or type or does it require Rx, post that too
I think for us new comers, just starting to put together a plan based on information we have gotten on this forum it would really be helpful.
It would also be nice after we compile the list to have a sticky, and also to include what the test is for.
The first 2 test's I believe are suggested by RickVanK for the Simplified protocol.
1. Methylation Pathyways Panel from Vitamin Diagnostics
Test for methylation cycleblock and gluthione depletion. Good one to tell you if methylation treatment will be helpful. Cost is $300
2. Essential Elements, Amino Acids & Toxic urine test from( I have 2 down, so not sure if this is right) Docters Data Lab & Direct Labs. The 24 hr urine collection is better than the spot urine test.
Other test's that Rich has talked about but not sure he suggest that they be done before starting the Simplified protocol.
1.Exatest tests for magnesium mouth swab
2. Metabolic Analysis Profile from Genova Diagnostics do not know if its blood or other or if you need Rx for it.
3. KPU test from Kryptopyrrole.com I know nothing about this one........someone enlighten me please.
I assume Yasko also recommends the ones above, if following her protocol????? Any others?

Some random tests or labs that have been talked about here
1. VIP Vira Immune Pathology from redlabsusa
2. Organic Acid test for ammonia toxicity
3. CDSA + OVA + Parasites from Meridian Valley Labs
4. Nutrigenomic testing
5. Cytochrome test Has to do with liver detoxing drugs??
6. Detoxigenomic Profile from Genova Diagnostics ??

OK thats it. Sorry it is such a mess, I am not good on computer stuff but maybe we can flesh this out, correct, add too, and then someone who knows what they are doing can make a sticky........yes??
Now someone is going to tell me a sticky already exsits!
Forgive any spelling error's. I wont blame it on CFS as it was bad already, but it has gotten worse.

 

[jackie]

HI juniemarie!:Retro smile: Great idea and I'm glad you brought this up (and thanks for your hard work!). This got me thinking - I remembered reading a section in the Canadian Consensus Document (the ME/CFS/FM Definition, diagnostic and treatment criteria/guidelines), that had an extensive list of tests suggested. It "reads" better in the context of the Document, but here are the basics I noted:
CBC, ESR, Ca, P, Mg,
Blood Glucose, serum electrolytes
TSH, protein electrophoresis screen
CRP, ferritin, creatinine
Rheumatoid Factor, Antinuclear antibody
CPK, Liver Function, Urinalysis
and additional:
Diurnal Cortisol levels, 24hr. Urine free Cortisol
Hormones including:
Free testosterone, B12 & folate levels
DHEA sulphate
5-HIAA screen
abdominal ultrasound
stool for Ova & parasites
NK cell activity
flow cytometry for lymphocyte activity
Western Blot for Lyme
chest X-ray
TB skin test
HIV
Do testing for 37-kDa 2-5A RNase l Immunoassay
For Neurological tests:
X-ray &/or MRI Brain & Spinal Cord
Tilt-Table*
Sleep Study
qEEG, SPECT & Pet Scan
24 hr. Holter Monitoring
!!!!!!!
I was too tired to write what each test was relating to....but your idea is a good one. Maybe others can continue to add to this.
Many of these are standard, of course...but I've been asking for a SPECT for 3 years...and "they" keep turning me down!

jackie:Retro smile:

 

[juniemarie]

Jackie Thanks for all those test. Sent you a P.M.

 

[Samuel]

I would really fiind useful a list of tests that has enough information to sort by priority. For example, some can be labeled "Rich" or something, while others are explained as being useful for viruses.

We have a lot of knowledge here that can help do that.

This is an excellent thread.

 

[juniemarie]

Exactly my thoughts Samuel. I hope others that are more up on these tests will beef up the list, then maybe it can be organized as you suggest into a easy to understand format, and put in an easy to find place.

 

[Hysterical Woman]

Hi Juniemarie,

Excellent idea about listing the tests, although I am sure it can get complicated.

Just a comment - the EXAtest that you mentioned tests for several minerals, not just for magnesium. Although many of us seem to be deficient in magnesium, it is the balance of all of them that give the best health status.

Thanks for your great ideas,

Maxine

 

[mezombie]

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.

 

[juniemarie]

Marie
Could you tell us what the initials of all of those test's stand for?

 

[mezombie]

Marie
Could you tell us what the initials of all of those test's stand for?

MRI = Magnetic Resonance Imagining

SPECT = Single Photon Emission Computed Tomography

BEAM = Brain Electrical Activity Mapping

QEEG = Quantitative Electro-Encephalo-Gram

 

[markmc20001]

for proving disability

For proving disability I was told by an advocate here that a place called pacific fatigue labs from stockton, ca is one good test to provide objective evidence of disability.

 

[thefreeprisoner]

Romberg test should be in there under Neurological tests.
It's really easy to do as well.

Rachel xx

 

[kurt]

Holy Cow that is a lot of testing!

The tests I would get are the ones that can lead directly to treatment. The VIP tests are very good, right on target. If I had the money I would get ALL of their tests.

This is their old list, the new one is not up yet:

CMCP Complete Chronic Fatigue [CFS] Diagnostic Panel (RNAP, RNAA, ELAS, NKCP, NOAS)

MCP1 Mini Chronic Fatigue (CFS) Diagnostic Panel (RNAP, RNAA, ELAS, NOAS)

RNAL RNase-L Anti-viral Pathway (RNAP, RNAA)

IM01 Intestinal Dysfunction Immunobilan Test (IgA, IgM)

HTLV T-cell Lymphotrophic Virus Profile (HTLV I, HTLV II)

INSP Infection Screen Panel- Qualitative (Mycoplasma Fermentans, Mycoplasma Hominis, Mycoplasma Pneumoniae, Mycoplasma Avium Paratuberculosis, Chlamydia Pneumoniae, Toxoplasma gondii)

HHVP Herpes Infection Panel (EBV, CMV, HHV6 [with A & B determination}, HHV7, HHV8)

MYCP Mycoplasma+ Panel - Qualitative
(Mycoplasma Fermentans, Mycoplasma Hominis, Mycoplasma

Pneumoniae, Mycoplasma Avium
Paratuberculosis)

CYT1 Inflammation Cytokine Profile
(IL1β, IL2, IL4, IL6, IL8, IL10, IL12p70, IFNγ, TNFα,)

INFP Inflammation Panel (C-reactive Protein, Elastase, Nitric Oxide Synthase, Rheumatoid Factor)

LYEA CD4/CD8 Lymphocyte Enumeration Assay (CD3, CD4-CD8 ratio, CD19 Absolute)

NKCP Natural Killer Cell Enumeration & Functional Assay (LU 30) Panel

HLP1 Heavy Metals Sensitivity Test - HELPTM Test (Arsenic, Copper, Lead, Platinum, Thiomersal, Palladium, Mercury, Gold, Silver, Aluminum, Beryllium, Nickel, Organic Mercury, Tin)

HLP2 Heavy Metals Sensitivity Test - HELPTM Test
(Chromium 3, Selium, Uranium, Cadmium, Chromium 6, Silicon, Cobalt, Manganese, Titanium)

 

[DysautonomiaXMRV]

Nearly all off the top of my head. Most are my results. lol

Immune:
Muscle Wasting.
Fungus infection of ALL toenails = Lyme,Immune compromised if in youth/young.
Molds in serum: (IgG: Candida Albicans, Aspergillus nige, Penicillium chrysogenum, Cladosporium herbarum, Alternaria alternata, Aspergillus fumigatus).
Inflammatory cells in urine (in combination of flank pain/cloudy urine yet absence of UTI).
Apoptosis of neutrophils.
Low Saliva Secretory IgG.
Abnormal CD4/C8 Ratio.
Lowered T3 count.
Increase Cytotoxicity of NK Cells.
TH17 Activation.
NF-kB activation.
CD14, C4A changes.
B-cell immunodeficiency depletion of CD19+IgM+ mature B-lymphocytes.
Elevated Monocytes on a consistent basis (indicative of infection).
Increased L-forms (small-colony variants) of coagulase negative staphylococci.
Consistent or Permanent Red throat at trips to doctors office points to obvious repeat/chronic infection OR virus.
Increased serum concentrations of IgM and IgA to lipopolysaccharide (LPS) of gram-negative enterobacteria.
Abnormally low ESR.
Presence of Auto Antibodies.
Leucocyte Elastase activity.
Protein kinase R activity.

Neurological:
Neurogenic/Saggy Bladder leading to overfill.
Slow voiding of bladder.
Lumbar Puncture: Cytokines in CSF and low GM-CSF. Very raised Ventricular CSF Lactate.
Lowered tryptophan with increased Trycat.
Sluggish Pupil Response to changes in light. (Not pen torch to the eye). Lights Dim, Lights On.
One Pupil larger than the other.
QEEG to look for seizure spikes and slow brain waves.
Reflexes: Look for 'Hyper-Reflexia'.
Vestibular dysfunction especially after exercise (changes in gait).
Neurotransmitter: Decreased Homovallinate
Raised Serotonin (Especially in Men).
Abnormal Lowered IQ on NeuroPsychometric Testing.

Neuro Imaging:
Shrinkage of Grey Brain Matter.
Changes in Choline which indicates brain damage: MRS Scan.
fMRI (Functional MRI): Changes in mental fatigue/blood oxygen levels during cognitive tasks.

Endocrine/General:
Low Niacin.
Low Functional SODase Inhibition.
Low Co Enzyme Q10.
Low Red Cell GSH-PX .
Low Amino Acids.
Low Aldosterone (May explain passing copious clear urine, not explained by Diabetes Insipidus Diagnosis or excess water intake).
CT or adrenal glad to check for atrophy. (May be abnormally small).
5Hr Glucose Tolerance Test with Insulin and Cortisol Levels (Should show poor Insulin curve).
Short Synacthen Test (Should show classic blunted response).
Buspirone Challenge Test (5-HIAA abnormal response).
Abnormal Post Praindial Insulin (Food).
Raised levels of Pesticides in Serum and especially fats. (Pesticide Fat Biopsy).
Low Esssential Fatty Acids (EFA).
Citric Acid Cycle: Decreased.
Low Glutathione-S-transferase.
Low Calcium/Potassium/Inorganic Phosphate.
Vasculitis.
Low Iodine.
Quinolinic acid (Neuro Toxin).

Cardio/Autonomic

Raised HS-CRP (Must be High Sensitivity).
Raised Homocysteine (plasma).
Raised Plasma Isoprostanes.
Raised 'bad' Cholesterol.

Observation of Orthostatic Intolerance narrowing of blood presssure 'gap' from supine to erect: E.g. 123/80 laying flat, (Correct 40 gap) 130/120 standing up. (Abnormal 10 gap with Diastolic hypertension!)

Abnormal mottling of hands in erect position. (local vasocontriction due to sympathetic nervous drive).
Abnormal blood pressure overshoot (needs specialist equipment during autonomic testing).

Heart Rate Variablity Test showing sympathetic nervous system in prodimant state supine and absence of parasympathetic activity resting. Severe Sympathetic activity standing.

24/hr Holter cardiac monitor: May show bradycardia in sleep, shortened QT interval, Abnormal exertional tachycardia in absence of SVT OR runs of SVT if suffering from previously unexplained abrupt onset tachycardia.

Metabolic:
Very Raised Oxidative Stress/Free Radical assays (iNOS and NOS).
Low core temperature, especially after hard exercise.(Reverse of normal).
Raised Nitrite in Urine after exercise.
Decreased VO2 Max and/or on 2nd following day of repeat testing (unique to ME/CFS).
Increased D-Glucaric Acid.
Lymphocyte Translocator Protein Studies for ATP: Poor TLP function for energy
Poor Lymphocyte ATP.
Poor Lymphocyte ADP to ATP.
DNA Adducts Toxins stuck onto DNA (Pre Cancerous).
Raised Cell Free DNA (DNA leaking into blood due to damage) causing tissue damage.
Unexplained and episodic amorphous debris in urine indicative of 'sloughing' from kidneys.

Haematological:
Abnormal amout of cupped Red Blood Cells (Changes in Red Blood Cell Morphology).

Medical Procedures:
Sigmoidoscopy: May show weak rectal muscles, explaining continance problems, or 'seapage' of rectal mucus into underwear.
Ultrasound of Thyroid Gland: May be enllarged due to poor thymus function and inflammation in absense of hypothyroid.
Testicular Examination in males: May be unusually extremely tender.
DEXA Bone Density Scan: May show early onset Osteoporosis.

 

[thefreeprisoner]

Blimey. One Pupil larger than the other?
Is that the test?
(Sorry, couldn't resist.)
That's an encyclopedia of test results you got there Dys.

Rachel xx

 

[DysautonomiaXMRV]

Hi Rachel. I don't know what causes one pupil bigger than the other, (eyes, not class size!) but it must be the central (nervous system). I've heard a few people mention this who have ME.

The list is huge as other than the immune tests, they are mostly my tests so I can parrot them off by heart. Also there's loads of information on the Internet I've read over the past 15+ years and I remember it.
Frustratingly, I am still on basic spelling and maths despite nearly drawing an ME pension. On a side note it's interesting, how much easier 'facts' are to retain (long term) - if one has a keen interest or a important reason to learn and sometimes, these can almost get to 'normal' levels even with an ME brain fog head!

What is even more interesting is the 'cost' of medical tests, sometimes even a few blood tests can be over 1,000 and so very few actually get done by patients, which is slightly annoying as we never get to see what's wrong with us.

Probably a good balance is best, pick the tests that are quite well established and go for them, even if the wallet (or relatives wallets) become a lot lighter.

 

[juniemarie]

Does anyone know when VIP DX is going to be up and running online? I would like to get cost on some of the test Kurt listed, and maybe some of them would help with my upcoming legal situation, to show I CFS......well, as best they can. It would at least be something medically official. I love it that people are posting more test that are available. Its very helpful for tired people to have so many in one place, instead of exhaustive searches.

 

[OurDayWillCome]

Hi Rachel. I don't know what causes one pupil bigger than the other, (eyes, not class size!) but it must be the central (nervous system). I've heard a few people mention this who have ME.

@DysautonomiaXMRV.... it is called Adie's pupil, and is fairly common amongst us, as you noted.

Definition

Adie's pupil is a neurological condition of unknown origin with an unusual, asymmetric presentation known as anisocoria, an inequality in the size of the pupils of the eyes. It is believed to be a result of damage to the nerve innervating a muscle of the eye known as the ciliary body. Alternately, the problem may be located at the ciliary ganglion, a kind of nerve junction structure from which the nerve to the ciliary body runs.

http://www.healthline.com/galecontent/adies-pupil

 

[maryb]

Blimey. One Pupil larger than the other?
Is that the test?
Rachel xx

:Sign Good one:
Rachel you do make me laugh - you are so naughty.
Dys no offence meant.

 

[Knackered]

How on earth did you get all those tests DysautonomiaXMRV?

 

[Cort]

Anybody who's had that many tests - I feel for!