I was in the fortunate group who had comprehensive coagulation testing by Hemex labs and Dave Berg before he retired and Hemex lab sold. I have mentioned in prior posts how heparin+piracetam is very effective for reduce brain fog in cfs (and jet lag too!). The unfortunate aspect is that no one has taken up his work subsequently — the typical Medical Doctor, if you are successful in getting coagulation tests, will only order the most common ones and ignore anything that does not suggest that you are about to have a stroke –i.e. acute coagulation and not low-grade chronic coagulation. CFS manifestations is often a variation of Hughes Syndrome aka Antiphospholipid Syndrome (APS). I have know people with CFS who were tested for the classic APS and was positive for it.
Dave Berg Research
The following are links to his work and description of his works
- A Simplified Introduction into Hypercoagulatble state in CFS
- IS CFS/FM DUE TO AN UNDEFINED HYPERCOAGULABLE STATE BROUGHT ON BY IMMUNE ACTIVATION OF COAGULATION? DOES ADDING ANTICOAGULANTTHERAPY IMPROVE CSF/FM PATIENT SYMPTOMS? , May 1998
- Chronic fatigue syndrome and/or fibromyalgia as a variation of antiphospholipid antibody syndrome: an explanatory model and approach to laboratory diagnosis. [1999]
- CFS Radio Program – Aug 29, 1999
- Town hall with Dave Berg, March 26, 2000
- Town hall with Dave Berg, July 16th, 2000
- Town hall with Dave Berg #3
- Town hall with Dave Berg #4
- Aug 2000, on Gulf War Syndrome
- Hemex Protocol Notes
Infections Shared
There are a series of infections associated with APS, and a series of infections associated with CFS. The full list of both are below — and they match!!!! Associated does not causes, but can often mean that the infection sees a friendly environment and moves in OR was already there and contained by a healthy immune system. If you have CFS, you likely have one or more infections that is likely to cause coagulation.
| Chronic Fatigue Syndrome Associated Infections | APS Infections |
|---|---|
| EBV (20% – 72%) — 11 articles on pubmed | Epstein-Bar Virus (EBV or HHV4) |
| VZV – 2 articles on pub med |
Varicella zoster virus (VZV or HHV3 -chicken pox) |
| ** | Human Immunodeficiency virus (HIV) |
| HHV6 (25% – 58%) – 12 articles on pub med |
Human Herpes Virus 6 (HHV6) |
| CMV (29%) – 4 articles on pub med |
Cytomegalovirus (CMV) (HHV5) |
| Coxiella Burnetii (Rickettsia)(90% – 50%) – 6 articles on pub med |
Coxiella Burnetii (Enteroviruses) |
| Lyme – 2 articles on pub med |
Lyme Disease (Rickettsia) |
| 1 article on Pub Med | Mediterranean spotted fever (Rickettsia) |
| Mycoplasma (41% – 69%) – 13 articles on pub med |
Mycoplasma |
| Anecdotal – see below |
Leprosy |
| ** | Tuberculosis |
| ** | Syphilis |
| Parvovirus B Three articles on pub med |
Parvovirus B |
| ** | Hepatitis |
| Chlamydia-Pneumonia (8%) – 4 articles on pub med |
Chlamydia-Pneumonia – 3 articles on pub med |
| Human Enteroviruses (32% – 82%) 2 articles on pub med |
Primary sources for APS infections was “Hughes Syndrome Antiphospholipid Syndrome” Springer, 2000 (2nd printing 2002), editor M.A. Khamashta. Chapter 14, “Infections and Antiphospholipid Syndrome”(by A.E. Gharavi and S.S. Pierangeli), p. 135.
Coagulation also happens with Multiple Chemical Sensitivity flares (which appears to be allergy-like except IgE is not involved):
- Dahl R, Venge P. Activation of blood coagulation during inhalation challenge tests. Allergy 1981 Feb;36(2):129-33;
- Pandit HB, Spillert CR, Shih RD. Determination of hypercoagulable state in acute bronchospasm. J Am Osteopath Assoc 1999 Apr;99(4):203-6.
- Armentia A, Barber D, Lombardero M, Martin Santos JM, Martin Gil FJ, Arranz Pena ML, Callejo A, Salcedo G, Sanchez-Monge R. Anaphylaxis associated with antiphospholipid syndrome.Ann Allergy Asthma Immunol 2001 Jul;87(1):54-9
- James E. Lessenger, Occupational Acute Anaphylactic Reaction to Assault by Perfume Spray in the Face, J Am Board Fam Pract 14(2):137-140, 2001
One person that I know very well with MCS, had a coagulation panel before a MCS exposure, and then 3 weeks afterwards — there was a jump of 5 Standard Deviation of active coagulation.
Treatment
Originally, we were recommended a Low-Molecular Weight Heparin, Lovenox by brand name (other names are Xaparin and Clexane), Enoxaparin sodium, taken by injection. Injections are not fun and Lovenox was expensive!!!.
Later, we learnt that the taking regular heparin sublingual (under the tongue for 2 minutes and then spit it out) appears to be equally effective and much cheaper (and no needle tracks!). Heparin is natural and stored with histamine in mast cells (it is debatable if histamine sensitivity is a side effect of the body releasing heparin to deal with coagulation issues, the release of heparin also releases histamine!). Regular heparin is Unfractionated heparin (UFH) as a pharmaceutical is heparin that has not been fractionated to sequester the fraction of molecules with low molecular weight.
[Sublingual application of heparin L for the treatment of patients with coronary insufficiency]. [1968]
“Moreover, drug costs for a six-day course of treatment for a patient weighing 176 pounds would be $712 for low molecular weight heparin Lovenox (enoxaparin) or Fragmin (dalteparin) versus $37 for unfractionated heparin, they reported in the Aug. 23 issue of the Journal of the American Medical Association.” [source]
There have been studies showing that heparin sublingual is not as effective [1952] and other studies found it was effective.[1951] [1959].
The final decision is really between the physician, the insurer and the patient. Injection of Enoxaparin sodium is the safest route to guarantee effect, but the use of sublingual unfractionated heparin would be the alternative.
Dosage? That is again a technical question best left for the professional. Dave Berg discovered that heparin at the dosages needed to prevent miscarriages due to APS was sufficient to cause CFS symptoms to disappear.
- “In six of 13 third-trimester pregnancies, > 10,000 units subcutaneously every 12 hours was needed.” [1995]
- ” The average dose was 16,400 IU/24 hours or 225 IU/kg of body weight per 24 hours.” [1989]
TIA – Transient Ischemic Attacks
Sometime CFSers will suffer TIA, especially from stressful situations. If it seems to match, you may wish to actually read up on it so you can describe your symptoms in it’s framework (and eliminate all of the non-TIA aspects from your symptoms) so your MD will magically diagnosis that you have had a TIA — remember to say “What is a TIA?”. Yes, this is gamesmanship with the MD. Give your MD an easy diagnosis!
- Weakness, numbness or paralysis in your face, arm or leg, typically on one side of your body
- Slurred or garbled speech or difficulty understanding others
- Blindness in one or both eyes or double vision
- Dizziness or loss of balance or coordination
- clumsiness of the hands or fingers. Or, you may notice more serious symptoms, like a complete inability to walk, move the arms, or move facial muscles.
- patients may tell their doctor that they had difficulty recalling words during the event (dysphasia may be the only symptom of the mini stroke) [HealthLine]
- Often just last 5-10 minutes – so patient or care giver report is the only evidence.
-
[HealthLine]The common signs of a TIA include:
- sudden increase in blood pressure
- muscle weakness
- temporary numbness in an arm or leg
- dizziness
- sudden fatigue
- unconsciousness
- confusion
- temporary memory loss
- body tingling
- personality changes
- difficulty speaking
- garbled speech
- poor balance
- changes in vision
My wife had many of these before she was treated for hypocoagulation, none afterwards.
REMEMBER: TIAs are spells, i.e. events that go on for 5-10 minutes. To many CFSers they are interpreted as short CFS flares and often ignored in the noise of CFS symptoms. Reporting one incidence happening in a month should be more than sufficient.
CAUTION
Before taking heparin, your MD should review all of your supplements to identify blood thinning herbs etc. In general, you want to omit all of them while taking heparin.
Also, there is a risk of Heparin-Induced Thrombocytopenia (HIT)” the frequency of HIT-IgG formation ranged from a low of 3.2% in orthopedic patients receiving LMWH to a high of 20% in cardiac patients …. The frequency of HIT was highest (4.9%) in the orthopedic–UFH patients and was relatively low in both the orthopedic–LMWH patients (0.9%) and the cardiac–UFH patients (1%).” [2000]
“HIT is considerably more common with UFH than with LMWH use. The absolute risk with LMWH is only 0.2%.” [2005]
“HIT occurs in 3 to 5 percent of patients who receive intravenous unfractionated heparin compared to the 0.5 percent incidence rate with subcutaneous LMWH, …..This result cannot be totally guarded against, but certain precautions can be taken. Adequate calcium and vitamin D supplementation is one potential prophylatic measure” [2005]
Low Molecular Weight Heparin is safest, 0.2% (1 in 500) may have HIT.
Question on Histamine Sensitivity?
Since mast cells contains histamine AND heparin, would heparin injections reduce histamine sensitivity?
Questions from Readers
- Low Molecular Weight Heparin (LMWH) is the safest because of 1/100th the risk of HIT.
- Which is best subcutaneous (below the skin) or intravenous (into a vein)?
- LMWH is done subcutaneous according to this article that reviews all of the anticoagulants. It’s half life is 4 hrs via this method versus 30 min for intravenous regular heparin.
- Dosage — I cannot suggest a dosage — that is for medical professional, the dosages for pregnancies was sufficient for the first reports to Hemex of remission. I found the following citations for prophylactic use:
- Using anticoagulants of any type (including herbs), mean that you must keep very aware of easy bruising or easy bleeding from cuts. If either happens, stop and contact your medical professional. It is best to do anticoagulant under medical professionals to verify that your liver, kidney, etc are functioning well before they potentially get stress.
