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!
Dear Dr. Tennant
What I’m about to tell you just may be the key to beat this insidious disease. I was down and out just under a month ago.
I started not eating and only drinking 1300 calorie shakes as my only food. During that time my gait was only short shuffling steps with a stooped posture. That went on for approx. 3 weeks. I woke up walked to the bathroom, I got in the bathroom and passed out, I found myself on the bathroom floor and got myself back to my bed.
I tried getting back to the toilet several times after that. I make it back to the toilet. I lined up like I did numerous times before. I was not lined up I sat back only to fall on my ass with my back against tub falling and slamming my ass on the floor and my elbows striking the floor like when I passed out the first time.
Some how I knew what I needed to do, don’t know how or why. I started with boosting my electrolytes. I read what I needed. The magnesium, calcium, potassium were the easy ones to refill. The sodium was the challenge slowly was the way. As I started the intake of sodium, I could feel the brain cells enlarging. That process was absolutely painful that took a week and a half for me. Expanding brain cells definitely was not anything I have ever thought about myself doing. The process was slow, when the sodium is low in the body the pins and needles is something you’ll never forget along with pain of brain cells getting rehydrated with sodium being reintroduced into the body.
The feeling of lost continuity of if the nerves within the body felt like nothing I’ve ever experienced. I can only say watching my arms and legs just pulse and have no control at all is the only way I can describe it.
When I started to recover, movement of my arms came back like nothing ever happened. My legs took some time almost like learning how to walk all over again, unsteady on my feet.
As I started recovering I had extremely painful migraine headaches with vomiting. I went thru that 2 times.
By this time I’m fully back on my feet and noticed there was no more ringing in my ears ZERO pain in my lower back and legs from the Adhesive Arachnoiditis and my posture was straight no more hunched over.
I cannot believe this happened. I’m hoping the fix is to disconnect the nervous system and re wiring by reconnecting it with the electrolytes. The new pathway is pain free. That’s how it happened for me. This was NOT planed I just wanted to get myself back on my feet. I have no pain but I still have foot drop in both legs the bladder issues as always it takes forever to pee, I can live with this without question.
Maybe losing electrical continuity and reconnecting it IS the work around to defeat this fucking burden that I lived with for 23 years.
My hope is what I went through can be re-created in a medical setting so that others if not all can regain exactly what I did. I do not recommend going the route I did I was just too stubborn to seek medical intervention. It ALWAYS starts with one, hopefully others follow.
I was also in palliative care along with seeing a neurologist every six months. I have conversed with Doctor Tennant numerous times in the past.
I am deadly serious what I just informed you about. I have no mental health issues.
MS
ANSWER
Dear MS,
Your letter “made my day.” I’m thrilled at your success. You may have hit on something. I’m going to advocate for electrolytes.
Best wishes,
Forest Tennant
Hi,
Here’s the list and doses I take, PEA 1200mg capsules. 2 capsules twice a day, made by XGOLD, DHEA with Pregnenolone and ashwagandha 200 mg capsules. 2 capsules once a day, Liposomal Glutathione with Transbetatol, 1750 mg. 2 capsules a day, any brand, BPC157 1000MCG.2 Capsules once a day, By NatureZitan, Dynamic Nerve by Stonehenge Health,1 capsules 3 times a day, Vitamin B-12 1000mg once a day, Juvenon ( check with your Doctor) for blood pressure, blood flow , circulation. 2 capsules a day, Muti Collagen types 1,2,3,5, and x. 2000 mg. 3 capsules (am, noon & dinner). Any brand.
Optional – Berberine 1000mg. 2 capsules in am for fat burner.
Also, AKEMI Detox Tea to detox liver & kidneys. One tea bag(cup) a day.
Let me know how you do and feel. I am not a Doctor. I am a patient with Adhesive Arachnoiditis. Just like you. I only coach folks like you telling you what I take and that it is helping me. Please keep me posted on your progress.
Regards, MS
Hello Dr. Tennant,
I just wanna thank you for all that you do and if it wasn’t for you, I believe I would be in excruciating pain daily and I believe my bladder would have stopped Working. I did send my MRI to you after a blood patch (which you said was mostly normal and didn’t see clumping) and I started getting burning in my feet burning in my back growing numbness and urine leaking. None of the doctors knew what to do until I saw your emergency protocol and at three weeks I got IV steroids 500 mg for three days and it stopped all of the burning it reversed the groin numbness and stopped the urine leaking.
The inflammation still came back after two months and I have been getting inflammation back-and-forth and I am definitely not normal but I believe because of the steroids I barely have any pain. I’m not taking anything for pain. I do have some neuropathy and the left side of my foot and leg and I do get some weakness in my back if I’ve bend down too much and I can’t lift anything too heavy.
Recently over the past few months, I wasn’t able to push a shopping cart or push my daughter in her stroller or walk without being uncomfortable or get weakness in my tailbone and pain in my back. I read your bulletin about stretching, so I started using my body more and squatting because I had felt that bending caused symptoms and they caused more flares, but I decided I need to move my body So I don’t deteriorate. I’m not sure why, but I started squatting and initially did cause weakness but I would just go take breaks and continue to squat. Eventually, I was able to squat without getting many weird symptoms and then after reading your post about stretching, I decided to bend down and pick something up off the floor Without squatting just bend down and Pick it up like a normal person, like kind of round my back instead of keeping it straight. When I did this, I felt a release in my lower back and sacrum and now I can push my daughter. I can walk up the hill. I can push a shopping cart again I can walk unlimited. You are right in the fact that it is important to keep stretching and moving our bodies. I just wanted to thank you for all the research you continue to do and bulletins that you post. JC
ANSWER
Dear JC,
Thank you for your kind letter and congratulations on using physical exercise to better your condition. You should consider the new inflammation protocol. You obviously have chronic spinal inflammation that needs to be controlled. Let me know your progress.
Best wishes,
Forest Tennant
Dear Dr. Tennant,
Hello I’m going to give you my review of MB…
I’ve tried several MB products on Amazon & it wasn’t until I tried the pharmaceutical grade MB from Alex jones BC of the purity & potency.
***I’m only noting his MB only BC of the potency. I do not get paid anything for suggesting it***
I can say with 1000% certainty it has healed all of my AA issues. I have no burning, no numbness & tingling, no bugs crawling on you or water dripping feeling. 0 AA related issues. Every so often it aches a tiny bit but going from being bed bound to doing yoga I would not have been able to do that without MB. My MS drs are shocked at my MRI BC my lesions/sheath started healing they even asked me last time I saw them what I was doing. I know it has an affinity for neuronal tissue & it’s like every nerve in my body is now renewed. Yes, I have days where my many illnesses give me an issue but it’s not the horrible AA pain anymore & I went from being bed bound to doing yoga.
It cured my mother’s night blindness, it cured my night blindness, enlarged liver, healed/healing the AA & the sheath. I have been able to retain massive amounts of information; it’s like a fog I’ve been living in has been lifted & I can see everything from a new perspective. It’s an MAOI so it makes me feel amazing. I know you can’t take it with SSRIs or SNRIs but I luckily don’t take either of those. MB gives me clean energy, better cognition, better memory, makes your whole body feel better, cleans the mitochondria so you can have overall better health & again lifts that fog that we live in bc of pain & the AA lumbar pain gone. My labs have never been normal until I started MB. I even have 0 inflammation in my labs for the first time.. probably ever.. they have never been in the green but since MB they have been. The inflammation it takes away is astonishing!
It’s helped my whole body. I also have primary immunodeficiency, gastroparesis, POTS, vEDS, MCAS, Hemiplegic Migraine, Hypoaldosteronism, chronic fatigue, chronic Pancreatitis & even that is doing better than it was. I have more illnesses than most people & I’m starting to think I have all these illnesses BC I am AB-. I wonder if there is a study for that?
Well Dr. Tennant I can assure you it works for AA pain & can heal the nerves if taken every day. Let me know if you have any other questions!
Sincerely, A
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