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.
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
- Decreased levels natural anticoagulants
- Abnormalities of clot breakdown (Fibrinolysis)
- Other Inherited Causes
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….