These letters from persons with AA and other causes of severe chronic pain have been posted to provide encouragement and hope for some relief and recovery to their fellow sufferers. You are not alone in your struggle! Occasionally, we will update with the most recent communications.
Dear Dr. Tennant,
I am writing to let you know how grateful and appreciative I am of your research and work into Adhesive Arachnoiditis and the management of chronic severe pain. My doctor and I have been following your treatment plan for a couple of years now and are very pleased with the results. Your treatment regimen has eased my pain and improved my quality of life. There is virtually no research into AA in Australia, and there is little recognition of it as a disease condition.
I suffered an intervertebral disc disruption of my L5/S1 disc in 1975 at 22 years of age, while working as a physiotherapist. The injury was diagnosed in 1980 by a world-renowned orthopedic surgeon, who successfully treated it with a anterior fusion, followed by a decompression laminectomy in 1983. Following further prolonged complications, he diagnosed an autoimmune condition of the cauda equina and confined me to bed for four years. Since then I have suffered severe unremitting pain, debilitating migraines, dysautonomia, neurological impairment of all limbs, and an inability to basically sit, stand, and walk.
During those years, I was provided with negligible treatment, and several medical specialists were unable to provide a satisfactory diagnosis. They tended to regard me as a medical fraud, a malingerer, etc. However, I did have the ongoing support and assistance of a rheumatologist. He treated me with prednisone and NSAIDS. I was also fortunate to be married to, and cared for, by my wonderful and extraordinary husband.
In the end, after 40 years of a roller coaster ride of bedrest, pain and despair, a public health physician diagnosed it as arachnoiditis. Then my husband found your wonderful work on the internet. My condition ticked all the boxes. We were stunned. After reading your article, my doctor started me on naltrexone 10 mg per day, and gabapentin 300 mg per day. These medications increasingly reduced the pain and ended the debilitating migraine headaches. Late last year, we saw your more recent article (June 2025) about descending pain, so I began taking propranolol, 40 mg per day, which has reduced my sensitivity to pain.
As I have said, I am very pleased to have a definite diagnosis and a treatment plan to follow, and I cannot that you enough for your outstanding research into arachnoiditis and severe chronic pain. My husband and I are very grateful and have become loyal followers of your work.
Sincerely, RF
ANSWER
Dear RF,
Your letter “made my day.” I can certainly use the inspiration and motivation to keep moving. You are so correct when you spell out barriers in dealing with a rare disease. I’m posting your letter on our website and sharing it with our Board.
Best wishes,
Forest Tennant
Dear Dr. Tennant,
You asked for my current protocol. Here it is. Start off with Milltrium Senior daily vitamin with Lutein @ 1 per day, PEA 600mg 2 capsules @3 times/day, DHEA 200mg @2per day, Glutathione 3 capsules @2 per day, BPC157 1000mg, 2capsules once per day, Dynamic Nerve from Stonehenge Health 3 capsules per day, vitamin B12 once a day ( the labs I sent you said I was low on B12), Vital Nitric Oxide 2 caps/day, Multiple Collagen types 1,2,3,5 & x 200mg 1 capsules 3x’s/ day, Tramadol 50mg & Diclofenac 75mg both as needed. Also, Relaxium 2caps & Tranadone 50mg both at bedtime to sleep.
Sincerely, M
ANSWER
Dear M,
I continue to like your protocol as I believe it hits all 3 necessary treatment components. I’m publishing your protocol on our website.
Best wishes, Forest Tennant
Dear Dr. Tennant,
I have been suffering from AA since 2010. I wrote to you about that time and with your protocol and physical therapy I am surviving, I have been taking MP for several years 2-3 times a week 4mg. My doctor prescribes. I have been in pain management for a couple of years and take LDN and through my own realization from flares and urgent care visits had my pm Dr prescribe ketorolac, which he allows 1- 1mg injection per week, and it is a life saver. I have blood work done every 6 weeks. I have not been in a severe flare in a long time, and I believe it’s because of the ketorolac. Prior to me injecting myself I was going to Dr weekly and getting an injection which is very costly. I am not cured and still have pain daily and nightly, but it is not as bad as it could be.
Thank you and your foundation for all you do, AT
ANSWER
Dear AT,
Your experiences need to be part of our study on MP and ketorolac. I’ve attached the study questionnaire. I really would like you to fill it out and return it. Thank you for your help.
With gratitude, Forest Tennant
Hello Dr. Tennant,
You diagnosed my husband with severe AA and sent several protocols for different receptor drugs that might give relief. His pain has been progressing and the 60mg OxyContin 3 times a day were becoming ineffective. His pain Dr said that in Florida they cannot prescribe the injectable hydromorphone but switched him to 32 mg of ER hydromorphone one times a day and that is not working, even in conjunction with the steroid dose pack and Adderall. The pain is unbearable.
We are grateful for your insight.
Best, SL
ANSWER
Dear SL,
Dan should be getting pain relief with his opioids. He needs a blood test to determine testosterone levels. If testosterone is low, opioids may be ineffective. He also needs a trial of injectable ketorolac and ketamine by troche or buccal tablet. We have some persons with AA who only get pain relief with ketorolac or ketamine. Lastly, he needs to consider an implanted electrical stimulator or perhaps intrathecal opioids. Please share this note with his physicians. In summary, test for testosterone and have therapeutic trials with ketorolac and ketamine.
Best wishes, Forest Tennant
Hello,
My question is, will ivermectin help with AA since they correlated parasites to RA and Ms. It helped to improve those patients. You may have addressed this, but I’m newly diagnosed and I’m having to teach my doctors about AA. They are very open to the suggestions you make in your books, and youtube channels. I’m their first patient to have AA.
You are amazing and thank you for being the hope we all need. I’ve had 3 back surgeries 2003 L4-5 discectomy, 2014 and 2018 cauda equina repair.
Just dx with AA July 25,2025 and MGUS 9-29-25 and I see rheumatologist next week. I’ve had a lot going on in a short span of time. Still able to work 4 hours daily as a nurse remotely. I’m trying to get in front of this.
Thank you, SN
ANSWER
Dear SN,
Yes, we believe that Epstein-Barr virus reactivation can cause acute AA to become chronic. We recommend ivermectin especially for persons who have an elevated Epstein-Barr nuclear antigen antibody (EBNA). Our ivermectin treatment recommendation is 6.0 mg for a week as long as symptoms improve with it. Let me know your progress.
Best wishes always,
Forest Tennant
Dear Dr. Tennant,
I hope this message finds you well. My name is Andrew Clayborough I’m 53 and from Otley in the UK and I am writing from the UK to express my deepest gratitude for your invaluable guidance and expertise regarding arachnoiditis.
For years, I struggled to find answers and validation for my symptoms within the UK healthcare system. It was your research, advocacy, and willingness to help that finally gave me the clarity and confidence I needed. Without your insights, I would never have known to request that the NHS formally consider and confirm my arachnoiditis diagnosis. Your support has been life-changing at a time when I felt overlooked by others.
Thank you for dedicating your work to those of us living with complex pain conditions—and for offering hope when it felt lost. Your compassion and commitment have made a profound difference in my journey toward recognition and care.
With sincere appreciation, AC
ANSWER
Dear AC,
Thank you for your kind note. Currently our research and experience is narrowing down the options to what works with most persons who have AA. We will continue the bulletins, articles, website, etc. to bring what we learn to you and the AA community.
Best wishes always,
Forest Tennant