Recent years have revealed that many persons who have what is called Ehlers-Danlos Syndrome and related conditions (hereafter EDS) commonly develop neurologic complications including AA. Due to this occurrence, this website will feature information on EDS and AA.

EDS belongs to a group of inherited disorders known as “Genetic Connective Tissue/Collagen Diseases”.   Besides EDS, the best known, related syndrome is probably Marfan Syndrome. Hypermobility with such physiologic abnormalities as double jointed and hyperextension of fingers, toes, arms, and legs characterize most persons with these disorders. The physiologic change that causes AA and other tissue complications is dissolution of collagen in connective tissue which results in micro-tears and inflammation. The arachnoid layer of the spinal canal covering is a fragile, connective tissue that may deteriorate in EDS and develop AA. We call the simultaneous occurrence of EDS and AA the “dual disease problem”. To date we believe the “dual disease problem” requires treatment for AA plus special anabolic (tissue growth) measures. This website will publicize information for understanding and dealing with the “dual disease” issue.

Anabolic Measures for Persons with AA and EDS

Explanation and Background

Persons with a genetic connective tissue/collagen disorder of the Ehlers-Danlos type (hereafter EDS) often develop spinal canal complications including adhesive arachnoiditis (AA), spinal fluid leaks, Tarlov cysts, tethered cord, and Chiari conditions among others. These serious problems are caused by collagen dissolution of the soft and fragile tissues that are in the spinal canal including the spinal cord, coverings, linings, nerve roots, and discs. Collagen dissolution leads to microtears and inflammation, followed by adhesions, leaks, and herniations. Currently, there is no specific treatment for EDS, consequently we recommend a program of anabolic (tissue growth) measures to regrow damaged tissues and prevent further tissue deterioration. The measures recommended are to compliment physician-ordered treatments for inflammation and pain and not be a substitute. Also, no guarantees are made for success of these recommendations or the development of any complications that may occur.

Measures

1. Dietary

A. High protein/anti-inflammatory diet (meat, fish, poultry, eggs, cottage cheese, vegetables, fruits).
B. Supplements of collagen, amino acids.
C. Vitamins B12, folic acid.

2. Exercises – Do Some Daily

A. Walks
B. Water soaking
C. Stretch, extend, and flex arms, hands, legs, feet
D. Straight leg raising while reclining
E. Light weightlifting – 10-15 pound maximum
F. Rocking in a chair
G. Walking/mild bounce on a trampoline

3. Non-Prescription Anabolic/Growth Hormone Supplements

A. Colostrum (Dosage is on label)

Plus – Options: DHEA (dose is 200-300 mg a day), gonadal extract, deer antler velvet.

4. Have a Hormone Blood Panel of: cortisol, estradiol, DHEA, pregnenolone, progesterone, testosterone. Replenish any that are low in the blood.

5. Tissue Building Hormones – Prescription Required (One or more recommended)

A. Human chorionic gonadotropin, 250 to 500 units 3 times a week
B. Nandrolone troche, 25 mg twice a day on 3 to 5 days a week
C. Human growth hormone (see label for instructions)

Education Notes: 1. Tissues in the body normally grow by hormonal stimulation, and that is the basis of these recommendations. Bibliography available on request. 2. Physicians have the option to accept or reject any recommendations.

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