NOTE FROM DR. FOREST TENNANT
I have finished my first analysis of the information sent to us by the first 50 applicants. The information is the best and most useful I have seen since we started the AA Research and Education Project about eight years ago.
The first, and primary question I wanted answered is, “Can the current medical measures being used by persons with AA stop or slow the tragic deterioration of AA?” I’m pleased to say the answer is a resounding “Yes!!”
The second question is obvious. What works? I will send along the answers. Basically, the participants who did the best had a similar approach to the disease. They had good pain control and applied multiple measures to suppress recurrent Epstein-Barr reactivation and autoimmunity. Please share the results of this study with your family, medical practitioners, and self-help networks. AA is still a rare enough disease that person-to-person education and sharing is essential.
March 7, 2025
FINAL REPORT – CLICK THE BLUE LINK TO DOWNLOAD COMPLETE REPORT
Final Report – Stopping Deterioration Study
PURPOSE
This study was primarily done to determine reasons why clinical deterioration may occur in adhesive arachnoiditis (AA) and to identify measures that may stop or slow deterioration. To date the onset of deterioration, characterized by lower extremity paralysis, fatigue, mental impairments, bladder/bowel dysfunction, severe pain, physical weakness, and wasting has been irreversible. Deterioration can be slow or rapid and occur in a short time span. The end result has historically produced a bed/house bound state, inability to care for oneself, wasting, and premature death. Terminus has historically been due to overwhelming infection, cardiac arrest, or adrenal failure. Secondary reasons for this study are to confirm the validity of the diagnostic screen of the seven major symptoms and the presence of Epstein-Barr Virus (EBV) reactivation and autoimmunity. Also, this study is to identify the forerunner or precursor conditions of AA. Of great importance is that this study is either to confirm, alter, or enhance the three-component medical protocol to treat AA. The three components are: (10 control of pain; (2) suppress inflammation and autoimmunity; (3) regenerate damaged tissue.
CONCLUSIONS
Although this is a small study it establishes the fact that at least some persons with AA can be treated and deterioration abated. The traditional mantra that AA is untreatable and hopeless should be discarded. The three-component medical protocol of pain control, suppression of inflammation and autoimmunity, and regeneration of damaged tissues should be continued. The protocol component of inflammation and autoimmunity suppression should have a special focus on Epstein-Barr virus reactivation and autoimmunity.