lassesen 2:36 am on June 7, 2017  

Genetic Thick Blood Tests for ME/CFS and Long COVID

Back in 1999, Dave Berg (Hemex Labs) publised “Chronic Fatigue Syndrome (CFS) &/or Fibromyalgia (FM) as a Variation of Antiphospholipid Antibody Syndrome (APS): An Explanatory Model and Approach to Laboratory Diagnosis. and stated “We have found that 3 out of 4 CFS &/or FM patients have a genetic deficiency”. A reader wrote yesterday:
  • “I have APS.  Positive on Lupus Anticoagulant. …and now some clogged veins (ischemia disease) and perivascular tunnels. Having POTS also doesn’t help…Latest to tack on is Sojogrins to all the others… Dad had three strokes”
Hemex has been sold, Berg has retired, and their specialize suite of coagulation for CFS is no longer available 😦 . The reader asked for what tests to get to detect these defects. I had testing from Hemex, and had a known defect — fortunately one that was easy to compensate for with Piracetam and Tumeric(with pepper). In fact, 4 out of 4 that went for testing were positive, with some 5 different defects (one had three of them!).

A Lab that appears to offer a reasonable set of tests

A reader asked me about this lab, and reviewing what they are doing, it’s a reasonable panel. I would suggest doing BOTH tests There are likely other labs that offer similar.

Allergy of what may be occurring

Your body is like a family. Job and expenses are balanced, in fact, the family may be able to do some savings. A sickness comes along and the body/family deals with loss of income for a few weeks and higher medical expenses. The savings are gone and the family borrows. The family gets over the sickness and get back to work. Unfortunately, the family debt keeps growing and growing. Similarly, the body’s coagulation system is working as it was before. The sickness triggers coagulation (expenses) and the available income is not enough to clear it. The sickness is gone, but the side effect persists. Some families may be able to get rid of the debt over time (spontaneous remission), others gets deeper into debt, going down here.
These are the tests that should be done for hypercoagulation (thick blood) and how often they are found in the general population.

Update

A 2001 description of various defects is in this JAMA article from 2001. The reported rate in the literature is 75% or more [1999]. The problem in getting these tests is showing evidence that they are warranted. The usual symptoms required are ” Symptoms include blood clots in the veins or arteries in the leg, arm, kidney, liver, lung, brain, heart or other organs, recurrent miscarriages and low platelet counts” [src]. Brain fog is not normally regarded as a sufficient symptom.  Dave Berg was doing testing due to recurrent miscarriages (his specialty), when he aggregate treating physician reports on CFS and FM patients going into remission from treating low grade coagulation that was causing the miscarriages. Some of the patients with low grade coagulation causing miscarriages included Olympic Athletes. If you mother had repeated miscarriages (my own had 5 miscarriages and varicose veins [Blood coagulation in varicose complexes].), then the odds increases significantly that you have an inherited coagulation defect. The rate for the general population is estimated to be 5%[src]  compared to 75%+ for CFS/FM)

Coagulation Panels

The hypercoagulatbility Panel from Machaon Diagnostics appears close to what Hemex tested. Tests included :
Anticardiolipin Antibody (IgG, IgM, IgA)
Antithrombin III Activity
aPTT-LA (Lupus Sensitive Reagent)
Factor V (5) Leiden Gene Mutation
Factor VIII (8) Activity
Homocysteine
Protein C Activity
Protein S Activity
Prothrombin Gene Mutation
Russell Viper Venom Time (dilute)
The following are some of the hypercoagulation states listed in ICD 9
  • Activated Protein C resistance
  • Anticardiolipin syndrome
  • Antiphospholipid syndrome
  • Antithrombin 3 deficiency
  • Antithrombin III deficiency
  • Factor 5 Leiden mutation
  • Factor 5 Leiden mutation, heterozygous
  • Factor 5 Leiden mutation, homozygous
  • Factor V Leiden mutation
  • Factor V Leiden mutation, heterozygous
  • Factor V Leiden mutation, homozygous
  • Hereditary antithrombin III deficiency
  • Hereditary heparin cofactor II deficiency
  • Hereditary protein C deficiency
  • Hereditary protein S deficiency
  • Hereditary thrombophilia
  • Heterozygous Factor V Leiden mutation
  • Heterozygous protein C deficiency
  • Heterozygous protein S deficiency
  • Heterozygous prothrombin G20210A mutation
  • Homozygous Factor V Leiden mutation
  • Homozygous protein C deficiency
  • Homozygous protein S deficiency
  • Homozygous prothrombin G20210A mutation
  • Hypercoagulability state
  • Hypercoagulable state
  • Hypercoagulable state (tendency to form clots)
  • Hypercoagulable state, primary
  • Lupus anticoagulant
  • Lupus anticoagulant disorder
  • Postpartum antiphospholipid syndrome
  • Protein C deficiency disease
  • Protein C deficiency disorder
  • Protein C resistance
  • Protein S deficiency disease
  • Protein S deficiency disorder
  • Prothrombin G20210A mutation
  • Prothrombin gene mutation
  • Resistance to activated protein C due to Factor V Leiden
  • Thrombophilia due to acquired antithrombin III deficiency
  • Thrombophilia due to acquired protein C deficiency
  • Thrombophilia due to acquired protein S deficiency
  • Thrombophilia due to antiphospholipid antibody

 Bottom Line

There have been no followup study done on CFS/FM patients to see how their incidence of the above conditions compare to the general population. In theory, the incidence would be much higher with likely 80% having at least one of the above.

There is usually difficulty getting testing for the above until after a blood clot happens. A CFS/FM patient with apparent blood circulation issues (i.e. face and skin being ‘grey’, brain fog) would likely benefit from such testing.