This story starts with female infertility. Hemex labs in Phoenix specialized in detecting coagulation issues that resulted in spontaneous abortion because the fetus could not get enough oxygen due to low grade coagulation / blood clotting. Often the treatment was low dosage heparin (a natural substance that the body produces). This condition is often classed as Antiphospholipid Syndrome (APS).

Several MDs of patients using this lab for coagulation testing remarked that while their patients were being treated with heparin treatment that had their FM or CFS symptoms disappear. Dave Berg, the owner of the lab, became curious and did some follow up studies out of his own pocket. He found that the majority of CFS patients had a testable state of hyper-coagulation. Berg noted that CFS patients were not all hyper-coagulated in the same way. He published these results in 1999. Dave Berg retired a few years later and sold his lab to a chain lab and this line of work faded away.

In 2011, a study on chronic Lyme patients found antiphospholipid antibodies found in almost all of these patients. CDC view chronic Lyme patients as a variation as CFS.

Personal Observations

I had the pleasure of meeting Dave Berg and conducted an extensive interview (townhall) with him in 2001. His lab did extensive testing and identified the inherited coagulation defect that was contributing to my CFS.

His lab’s hematologist was very familiar with a wide variety of non-prescription items like bromelain, nootropics, tumeric, serrapetase, nattokineases, lumbrokinease (which at that time could only be purchased in Canada and required a prescription). The result was the ability to counter my specific defect in general without needing prescription items.

Today, there is a very unfortunate situation, most hematologists are not interested in non-acute coagulation issues. There are a dozen stages in the coagulation cascade with considerable complexities to each, so most GPs (and many CFS specialists), are not interested in entering this complex world.

IMHO, it is worthwhile for a CFS patient to be tested for all possible inherited coagulation defects. The odds are that you will have at least one (I know of a person that had three different ones!) A minimum list of that should be test for shown below

• Inherited Causes of Blood Clots
  • Increased levels of natural procoagulants
    • Factor V Leiden mutation (APC resistance)
    • Prothrombin 20210 mutation
    • Hyperhomocysteinemia
    • FVIII, FIX, FXI, FVII, VWF
  • Decreased levels natural anticoagulants
    • Antithrombin
    • Protein C
    • Protein S
    • Thrombomodulin
    • Heparin Cofactor II
    • Tissue Factor Pathway Inhibitor (TFPI)
  • Abnormalities of clot breakdown (Fibrinolysis)
    • Plasminogen deficiency
    • Decreased levels of tissue plasminogen activator (tPA)
    • Increased levels of plasminogen activator inhibitor (PAI-1)
    • Elevated levels of thrombin-activatable fibrinolysis inhibitor (TAFI)
  • Other Inherited Causes
    • Paroxysmal nocturnal hemoglobinuria

The problem is that once identified, some MDs may not view these defects and CFS as being related. Since you have no acute signs, there is no need to treat them….

The shared infections

There are a list of infections associated with CFS. By associated I mean that CFS patients may have infection H, 45% of the time and the general population 5% of the time. Since ALL CFS patients do not have H, then it must not be the cause…. When I compared the list of CFS infections to those associated with APS, they were the same list…. All of the CFS associated infections (EBV,Lyme, Rickettsia, CMV, etc) are known to trigger coagulation. Coagulation that is not fully cleared up because of some inherited coagulation defect….

This is the start of a series of posts dealing with remission from CFS/IBS/FM and related autoimmune diseases. There are many approaches that have reported a 70-80% remission rate. The last 20-30% is a concern for me. My model of CFS is simple to describe but not so simple to treat 😦

Onset is the establishment of a dysfunctional gut bacteria that is stable. This shifts the production of amino acids, minerals, etc into a state that results in re-activation of one or more pathogens (Lyme, EBV, CMV, Q-fever and about 30 other known infections). The re-activated pathogens contribute to keeping the dysfunctional gut-bacteria stable. Until both the pathogens and the gut bacteria are normalized, the CFS condition continues.

Consequences of this model are

• Often a substance will result in one set of symptoms disappearing or improving. For example, I experienced Sjorgen’s syndrome disappearing after 3 days of Mutaflor
• Often a substance will work for only 2-4 months (as studies found for NADH), this may be because it impacts one species of one family which then disappears and the space it occupied was populated with a different species

For pathogens, the following are known mechanism that they use to defend themselves from eradication:

• Resistors — about 0.01-0.5% become long term sleepers. Most antivirals and antibiotics disrupt the reproduction process. A resistor sleeps through this!
• Biofilms — often produce by bacteria but exploited by viruses. This can view as a “space dome” that acts as a barrier to anitvirals and antibiotics
• Fibrin Walls — Instead of forming a biofilm to form a space dome, it uses the body clotting mechanism to create walled off valleys inside of tissues. Overtime some of the walls will be naturally dissolved, releasing the pathogen. Antivirals and antibiotics cannot get to these safe valleys
• Mutations — Studies suggests that some pathogens increase their mutation rate when they sense members of their own species dying. In other cases there may be several mutations already in the body. All it takes is a mutation that resists or ignores the antiviral or antibiotics to keep the infection alive

The easiest way to method to determine if biofilms are being exploited by pathogens causing CFS symptoms is to do a 5 day course of EDTA or NAC (or both together). This should be done only after under medical review. The expected result would be a worsening of symptoms (herx) for those days, followed by some improvement of symptoms.

• EDTA (Check with CFS friends in case they have extra — you only need 10-15 capsules to test)
  • US [750mg @ 120 capsules $10]
  • UK [500mg @ 120 capsules £16]
• NAC
  • US [60 capsules $6]
  • UK [60 capsules £7]

Note Some people will claim that the herx is because you are full of toxins. I have been unable to find a single study where NAC or EDTA treatment for known surplus toxins (outside of autoimmune illnesses) produced a herx. It is more probable that the herx is due to pathogens then the typical toxins.

There are several supplements that have been demonstrated to be neuroprotective according to PubMed. These items in general protects the brain and decrease brain fog. Theses items can be divided into to classes. Items that could cause a herx (worsening symptoms initially) and low risk of herx.

• Low Herx Risk
  • Ashwagandha
  • Boswellia
  • D-Ribose – already covered
  • Piracetam – already covered
  • Ginger – slight
• Probable Herx
  • Olive Leaf Extract
  • Most tetracycline antibiotic)
  • Some Beta-lactam antibiotics
  • Citicoline – not effective for CFS, per studies

There are several supplements that have been demonstrated to be neuroprotective according to PubMed. These items in general protects the brain and decrease brain fog. Theses items can be divided into to classes. Items that could cause a herx (worsening symptoms initially) and low risk of herx.

• Low Herx Risk
  • Ashwagandha
  • Boswellia
  • D-Ribose – already covered
  • Piracetam – already covered
  • Ginger – slight
• Probable Herx
  • Olive Leaf Extract
  • Most tetracycline antibiotic)
  • Some Beta-lactam antibiotics
  • Citicoline – not effective for CFS, per studies

There are several supplements that have been demonstrated to be neuroprotective according to PubMed. These items in general protects the brain and decrease brain fog. Theses items can be divided into to classes. Items that could cause a herx (worsening symptoms initially) and low risk of herx.

• Low Herx Risk
  • Ashwagandha
  • Boswellia
  • D-Ribose – already covered
  • Piracetam – already covered
  • Ginger – slight
• Probable Herx
  • Olive Leaf Extract
  • Most tetracycline antibiotic)
  • Some Beta-lactam antibiotics
  • Citicoline – not effective for CFS, per studies