Ehlers-Danlos Syndrome

Overview

Ehlers-Danlos syndrome (EDS) refers to a group of genetically-inherited disorders involving the weakening and excessive elasticity of connective tissues.

There are a number of subtypes. Vascular EDS can give rise to postural orthostatic tachycardia syndrome (POTS). Where orthostatic hypotension and tachycardia occurs, the heart can rise to 30 beats per minute on assuming the erect position. Other major vascular issues include valvular involvement in the heart and predisposition to aortic dissection.

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Symptoms

Symptoms of Ehlers-Danlos syndrome (EDS) include:

  • Unusually flexible joints
  • Stretchy skin
  • Joint pain due to arthritis
  • Easy bruising due to weakening collagen
  • Autonomic dysfunction
  • Decreased intestinal motility and slow peristalsis causing a delay in gastric emptying
  • Abnormal ingress and egress of cerebrospinal fluid into the brain region

Dysautonomia is sometimes associated with EDS. For an accurate diagnosis, Lyme disease and halogen toxicity need to be ruled out.

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Managing Ehlers-Danlos Syndrome

The initial plan for managing Ehlers-Danlos syndrome should focus on the strengthening of elastin and collagen. Other steps for managing Ehlers-Danlos syndrome include:

  • High doses of vitamin C stimulate cells to repair and rebalance. The effect of vitamin C can be enhanced with supplements that stimulate bone marrow stem cell mobilization. Additional aid can come from stem cells harvested from the patient’s bone marrow, which can be done quickly and at a low cost at our clinic.
  • Pulsed electromagnetic frequency pulsation (PEMF or Portable SOMA) to enhance cellular function.
  • The addition of ozone and hyperbaric oxygen therapy (HBOT).

Additional supplements to help manage EDS include:

  • Collagen type 11 supplement
  • Avocado soy extract
  • Essential oils applied topically around the joints
  • Concentrated frankincense with hawthorn and gingko to increase blood flow to the joints
  • Essential amino acids
  • Vitamin B6
  • Vitamin D3
  • Emulsified vitamin A
  • Parent essential oils to provide omega-3s
  • Flaxseed to supply healthy prostaglandins
  • Glucosamine sulfate, which needs approximately three months to take effect
  • Collagen hydrolysate

Herbs and ayurvedics that manage and reduce elasticity include:

  • Yashtimadhu Ghrita
  • Triphala Ghrita
  • Mahanarayan oil
  • Mahamash oil

Herbs that increase the quality of connective tissue include:

  • Glycyrrhiza glabra
  • Centella asiatica
  • Hemidesmus indicus
  • Trichosanthes dioica
  • Cissampelos pareira
  • Picrorhiza kurroa
  • Holarrhena Antidysenterica
  • Cyperus rotundus
  • Azadirachta indica
  • Terminalia chebula
  • Emblica officinalis
  • Terminalia bellerica
  • Vitis vinifera

Supplements for pain from EDS include DL-phenylalanine, chlorella, blue green alga, turmeric with curcumin, and prolozone with stem cells (which strengthen muscles around the joints).

Serotonin, venlafaxine, and acetylcholine levels may be low in individuals suffering from POTS. Mestinon prevents the breakdown of acetylcholine, and is also good for post-prandial hypotension and blocking prostaglandins. However, it should not be used over the long term.

Desmopressin can reduce water loss, and clonidine can be used to stabilize post-ganglionic sympathetic outflow.

Additional vasoconstrictors include Ritalin, octreotide, and theophylline. Ritalin increases peripheral vascular resistance through stimulation of alpha-receptor stimulation. Octreotide decreases splanchnic dilation. Midodrine is useful in managing peripheral denervation, which can result fluctuations in blood pressure.

Melatonin and kava can worsen POTS.

Since there may be an element of nerve dysfunction in POTS, the following nerve tonics may be applied:

  • Niacin
  • Taurine
  • Curcumin
  • Quercetin
  • Passion Flower / Devil’s Claw
  • DHA for synapses

Heavy metals must be excluded as well.

If arrhythmia is associate with POTS, magnesium can help. Quercetin, Claritin, and DAO supplements can help manage raised histamine levels.

For hyperadrenergic POTS, where an excess of norepinephrine exists, reducing dopamine can be helpful, along with clonidine.

POTS can also be managed and reduced with horizontal or recumbent exercise, including swimming, cycling, and rowing. Patients should not go beyond the limits of joint movement. Tai Chi is another helpful form of exercise.

Eating small, frequent meals, sticking to a low-sugar, low-carb diet, elevating one’s bed 12-15 inches, wearing a cooling vest in hot weather, and wearing compression stockings are all additional, helpful steps for managing POTS.

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If we fill our hours with regrets of yesterday and with worries of tomorrow, we have no today in which to enjoy our existence. Seize the day, and take control of your health and life. How you are going to live those tomorrows will depend on how you act and choose today. - George Allibone M.D.