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The document below may be a helpful template if you are dealing with a demonstrated coagulation problem. It has been used for a Youth with CFIDS who has temperature and chemical sensistivities, as well as possible TIA (i.e. "severe brain fog"). Portions are specific to results of certain tests.

Definitions:

Anaphylaxis: An acute, generalized life-threatening allergic or hypersensitive reaction in a previously sensitized person (i.e. a person who has previously been exposed to that particular allergen) who comes into contact with the same allergen again. The reaction includes activation of fibrinolytic and coagulation systems (see van der Linden PW, Hack CE, Struyvenberg A, Roem D, Brouwer MC, de Boer JP, van der Zwan JK. Controlled insect-sting challenge in 55 patients: correlation between activation of plasminogen and the development of anaphylactic shock. Blood 1993 Sep 15;82(6):1740-8) .

Antiphospholipid Antibody Syndrome (APS):  A deficiency of annexin V that normally forms a shield around certain phospholipid molecules that blocks their entry into coagulation (clotting) reactions. In the antiphospholipid antibody syndrome, the formation of this shield is disrupted by the abnormal antibodies. Without the shield, there is an increased quantity of phospholipid molecules on cell membranes, speeding up coagulation reactions and causing the abnormal blood clotting characteristic of the antiphospholipid antibody syndrome. Known also as Antiphospholipid Syndrome and Hughes Syndrome.

Chronic Fatigue Syndrome (CFS): A debilitating medical condition, chronic in nature, cause unknown, diagnosis by exclusion, no known verified test, treatment by relief of symptoms, life style changes, and occasionally time. Known also as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and as Myalgic Encephalomyelitis (ME).

Prothrombin Fragments 1+2: byproducts of the coagulation, they are measured to detect activation of the coagulation mechanism.

Prothrombin 20210 Defect: A condition that results in heightened levels of some coagulation proteins such as hyperprothrombinemia. Clinical features include cerebral vein thrombosis, venous thrombosis and pulmonary embolism.

Thrombosis: The formation of a blood clot within the circulatory system.

Transient Ischaemic Attack (TIA): has the same origins as that of an ischemic stroke. Stroke is caused by a clot blocking the blood supply to part of the brain. About one-third of the people who have a TIA will have a stroke within 5 years. One-third will have more TIAs. A clot may occur as part of the coagulation mechanism.

REQUEST / COMPLAINT

That PERSON has a diagnosis of what is commonly known as Chronic Fatigue Syndrome(CFS). Clinical laboratory tests indicate that PERSON probably has a variant of Antiphospholipid Antibody Syndrome (APS), a condition that is the antithesis of hemophilia that is cited in 34 CFR Part 300.7 (c)(9)(i). This variant was first described in the medical literature in 1999 (see D. Berg, L. H. Berg, J. Couvaras and H. Harrison, Chronic fatigue syndrome and/or Fibromyalgia as a variation of Antiphospholipid antibody syndrome: an explanatory model and approach to laboratory diagnosis. Blood Coagul Fibrinolysis. 1999 Oct;10(7):435-8.).

That the PERSON was found to have abnormalities on a Hereditary Thrombosis Risk Panel suggesting that PERSON  has a Prothrombin 20210 Defect. This defect was first described in the medical literature in 1997 (See Conard J, Mabileau-Brouzes C, Horellou MH, Elalamy I, Samama MM. Multigenic thrombophilia: genetic anomaly of factor II and mutation of factor V Leiden. Study in a French family, Presse Med 1997 Jun 14;26(20):951-3.).

That the PERSON is under treatment by [PHYSICIAN] who has received training from the discoverer of this variant of APS. This training included instruction from other physicians treating this condition in a clinical setting.

That the literature on CFIDS clearly includes Temperature Regulation Dysfunction is typically seen with CFIDS (See B. Hyde, A. Jain, Clinical Observation of Central Nervous System Dysfunction in Post-Infectious, Acute Onset M.E./CFS,  The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, The Nightingale Research Foundation, Ottawa, Canada, 1992: 38-65):

That a known consequence of overheating is the triggering of the coagulation cascade (See O'Donnel, T., Jr. “Acute heat stroke. Epidemiologic, biochemical, renal, and coagulation studies”. Journal of the American Medical Association, 1975, 234, 824-828, Bouchama A, Bridey F, Hammami MM, Lacombe C, al-Shail E, al-Ohali Y, Combe F, al-Sedairy S, de Prost D. Activation of coagulation and fibrinolysis in heatstroke. Thromb Haemost 1996 Dec;76(6):909-915)

That Antiphospholipid Syndrome has had unusual anaphylaxis associated with it (see 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 ).

That exposure to perfume is known to provoke Anaphylaxis (see 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).

That the PERSON has repeatedly shown hypersensitive reactions to scented products while attending school since the onset of the condition. The reactions have indicated activation of fibrinolytic and coagulation systems. The PERSON has been sent home by the school nurse after each incident.

That a variety of allergic illnesses, such as bronchial asthma, is known to provoke coagulation (see 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.

That the literature indicates that a mask is not effective to prevent the reaction ( See Placebo-controlled challenges with perfume in patients with asthma-like symptoms.  Allergy 51(6):434-9, 1996 Jun, Millqvist E, Lowhagen O.)

That the literature indicates that smell is incidental to the reaction as cited in  Provocations with perfume in the eyes induce airway symptoms in patients with sensory hyperreactivity.  Allergy 1999 May;54(5):495-9, Millqvist E, Bengtsson U, Lowhagen O, namely "patients with a history of sensory hyperreactivity develop asthma-like symptoms when exposed to strong scents, even if they cannot smell any scent… The symptoms are not transmitted via the olfactory nerve” 

DISABILITY SECTION

That the Social Security Administration recognizes CFS as a disabling condition and has enacted “SSR 99-2p: POLICY INTERPRETATION RULING TITLES II AND XVI: EVALUATING CASES INVOLVING CHRONIC FATIGUE SYNDROME (CFS)” dealing explicitly with this disability.

That the literature reports the following symptoms that are typically seen in clinical practice with CFIDS:(Extracted from B. Hyde, A. Jain, Clinical Observation of Central Nervous System Dysfunction in Post-Infectious, Acute Onset M.E./CFS,  The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, The Nightingale Research Foundation, Ottawa, Canada, 1992: 38-65) ** this is an incomplete list, see text for the full list**

  1. Temperature Regulation Dysfunction
  2. Acquired Cognitive Dysfunction
  3. Loss of Verbal and Performance Intelligence Quotient
  4. Dysfunction in Simultaneous Processing
    1. Easy distraction
    2. Decreased concentration
  5. Receptive and expressive dysphasia
  6. Reading Comprehension Dysfunction
  7. Dyscalculia
  8. Abstract Reasoning Dysfunction
  9. Memory Dysfunction
    1. Dysfunction in making new memories
    2. Dysfunction in recalling formed memories
    3. Immediate and delayed verbal recall dysfunction
    4. Visual Recall Dysfunction
  10. Volition Dysfunction
  11. Tactile Dysfunction or Apraxia
  12. Sleep disorders (Hypersomnia and Insomnia)
  13. Sensory Dysfunction
  14. Auditory Dysfunction
  15. Sensory Storms
  16. Pain Dysfunction
  17. Auditory Dysfunction
  18. Visual Dysfunction
    1. Pain
    2. Photophobia
    3. Latency of Accommondation
    4. Nystagmus
    5. Double Vision
    6. External Ophthalmoplegia
    7. Internal Ophthalmoplegia
    8. Tearing and Dry Eyes
    9. Tunnel Vision
    10. Night Vision Loss
    11. One-sided and bilateral loss of color vision
    12. Palpebral Oedema
  19. Central Visual Dysfunction
    1. Reading Comprehension loss
    2. Writing Dysfunction
    3. Distance and Spacial Dysfunction
    4. Depth of Field Dysfunction
    5. Visual Clouding
    6. Visual-Auditory Dysfunction
  20. Hyperacusis
  21. Jamais Vu Episodes
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