We will publish letters and comments on this site.  They will rotate often as we believe actual letters and case reports are an excellent resource for arachnoiditis patients to improve their care.  Send your letter to “Arachnoiditis Research Project“.

You may send your questions to veractinc@msn.com , fax to 626-919-7497, or mail to:

The Tennant Foundation

Arachnoiditis Research Project

336 1/2 S. Glendora Ave.

West Covina, CA 91790-3043

 

Dear Dr. Tennant,

I so hope that you can help me. I am 53 and my husband is 60. I so believe we are both suffering from arachnoiditis. Three days ago, I started some of the self-help protocols for us both and I am seeing some positive changes. However, I am unsure of how much/when to take some of the supplements. I have DHEA 50mg, Serrapeptase 40,000 and 250,000, Turmeric/Curcumin 900mg, Bovine extract, Boswellia and just today Pregnenolone 30mg. Neither of us take any other medications at this time; however, I do get a B12 injection once a month 1ml and I’ve had us start a multi vitamin. Please, please help as soon as you can. I am afraid I will overdose us and make things worse. I am currently waiting to have MRI’s and my husband just had one for his back.

Thank you so very much!! DL

ANSWER

Dear DL,

I’m delighted to hear that you and your husband are starting self-treatment. There are enough non-prescription drugs available that most AA patients can get good help without a physician. First, you need to take pregnenolone and/or DHEA at a dosage of 200 to 400 mg a day on 4 to 6 days a week. You will also benefit from an adrenal extract. Except for pregnenolone and DHEA, you simply follow the instructions on the label.
Let me also emphasize that daily walking and stretching are critical to prevent progression of AA.

Best wishes, Forest Tennant, MD, DrPH

Dear Dr. Tennant

I have found toradol sublingual…40mg….should I take this instead of gabapentin, or perhaps 2 times a week instead of gaba those days?
Medrol® I have only found in injections…. 40mg…..what do I do? once a week? or twice? is the concentration ok?
Finally…medroxyprogesterone…I’m taking twice a day for a month and a half now….no changes in me…should I continue?

Thank you, G

ANSWER

Dear G,

If you take a hormone like medroxyprogesterone for a month and you receive no benefit, stop it and switch to another. I like the program where you take gabapentin and toradol. Gabapentin is a pain reliever, and toradol is an anti-neuroinflammatory agent. If all you can find is Medrol injection, I suggest a low dose of 2 to 4 mg 2 to 3 days a week. Other than a potent, symptomatic pain medication, you don’t need to take the drugs that work for AA daily.

Best wishes always,
Forest Tennant MD, DrPh

Dr. Tennant,

Thank you for your reply. Does this eliminate injections all together or should the first dose still be an injection?
Thank you for all your work for Arachnoiditis! L

ANSWER

Dear L,

Injections are slightly more effective than troches. You can mix them. Some patients use troches routinely and reserve injections for flares.

Best wishes always,
Forest Tennant MD, DrPh

Dr Tennant,

I had a L4-5 fusion January of 2000 and I’ve been in pain for 19 years. I believe I have arachnoiditis and I was wondering if you could go over my MRI? I have a consultation soon for a spinal cord stimulator and I’m not sure if I should go that route. It’s very scary. Thank you for your time.

Sincerely, CB

ANSWER

Dear CB,

I will be happy to review your MRI. Send images of your lumbar-sacral area as images or disc. An electrical stimulator may give you some symptomatic relief. I recommend stimulators only after a patient is on the 3-cmponent medical treatment protocol. Why? If a patient is not on anti-neuroinflammation and neuroregeneration agents, arachnoiditis will usually progress. My advice. Get on a good 3-component medical program and then think about a stimulator.

Best wishes always,
Forest Tennant MD, DrPh

Dr. Tennant,

Since starting pregnenolone and numerous other supplements I have found much relief in my symptoms. I am not in excruciating pain but do feel tightness, heaviness and altered sensations in my thighs mainly. I have no pain in my feet or near my bottom or genital area. I’m taking daily walks and tried power walking but my hips hurt a lot. I feel like I can recover and will need a further MRI done later down the tracks just making sure its not progressive. Since last month my symptoms have regressed and I will be in full force treating myself with your protocols. Still no local doctor believes my health is in danger and have to battle on my own here. MN

ANSWER

Dear MN,

Pregnenolone has been one of our most beneficial research discoveries. The dosage needs to be between 200 and 400 mg a day taken 4 to 6 days a week. Pregnenolone is a hormone made by the spinal cord to provide pain relief, suppress neuroinflammation, and regrow damaged nerves. I recommend you get some Valerian Root from a health food store. Take 2 to 3 dosages a day. When combined with pregnenolone, you will get even more pain relief and have less suffering.

Let us know what else is helping. Unfortunately, too many adhesive arachnoiditis patients can’t find any medical help and must treat themselves.

Best wishes always,
Forest Tennant MD, DrPh

Dr. Tennant,

I live in Montegut, La. I truly need your help! I was dragged under a car 110 ft in 2007. I overcame that incident. But then had several injections in my spine. Then had a back surgery. This went on again and I had another back issue and had to get more injections. While getting one of the injections, the Dr or his staff dropped me and broke my back. I then had to wait til my back healed to get the back surgery. I received the back surgery, healed up from it but on my MRI, it stated nerve clumping. No one even informed me of that. I started to have serious problems with pain and had another MRI and it said I had arachnoiditis. I was sent to the Dr that broke my back and he has a hate for me because I mentioned that I had arachnoiditis. He decided to send me home with Tramadol and Tylenol 3. I have not seen him in 2 months and I am in so much pain I feel like I’m going to die. Please help me Sir! You are my only hope. I will do anything you ask of me. Please help me Sir I’m begging you!

Thank you for your time.
Have a blessed day Sir, AP

ANSWER

Dear AP,

There is much you can do to help your situation even if your doctors won’t help. First, you must take medications from all 3 components of the new protocol. Hopefully one of your doctors will prescribe ketorolac and Medrol® to you as we have found these 2 drugs to almost be essential in treating AA. We have many letters on our website from patients whose doctors won’t help much, if any.

If no doctor will prescribe ketorolac and Medrol®, obtain pregnenolone from a health food store, “Life Extension”, or the internet. Start at 25 to 50 mg a day and work up the dosage over a couple of weeks to 200 mg a day. Most AA patients get considerable relief.

Best wishes always,
Forest Tennant MD, DrPh

Dr. Tennant,

Hello, I pray that you are well. I’ve been taking about 200 mg of pregnenolone and 400 mg of circulating free curcumin for about a week. When I read the reviews of the pregnenolone, people were taking 2 drops and reporting increased energy and all these great things within a couple of days. On 200 mg, 2 droppers full, I can’t say I feel any different. Maybe I’m so depleted I need more time or I need a higher dose. How much is too much pregnenolone? And is my dose of curcumin adequate?

Thank you for your time, D

ANSWER

Dear Deborah,

First, you should increase your pregnenolone up to 300 mg and take it for a month. If you feel no different after a month switch to medroxyprogesterone, HCG, or nandrolone. The dose of curcumin is unknown, but I do recommend it as an on-going supplement. Follow the directions on the label.

I’m attaching a document for you to determine whether you are a mild, moderate, severe, or catastrophic case. If you are any category except MILD, you will need, in my opinion, ketorolac and methylprednisolone, in addition to pregnenolone.

Best wishes always,
Forest Tennant MD, DrPh

Dr. Tennant,

I have found medroxyprogesterone 10mg and I have started taking 2 a day as you indicated, I also take 100mg of DHEA and 100 of pregnenolone…among other things.

Question…Could you kindly tell me what symptoms…if any, I should feel because of all this medicine? How would I know if I’m making progress? Thank you, G

ANSWER

Dear G,

We have recently determined that DHEA has little effect on ARC, and your pregnenolone dose will need to be between 200 and 400 mg a day.  If you take these medications for 1 month and see no change, it means they are not effective in you.

The positive changes that you and your family should see if a medication is effective after a month is less pain, more energy, and improvement in your physical function.  In particular, if you can better extend your arms and legs.  Also, not if burning or intermittent pain in your feet, legs, and back improve.

If you or your family see no improvement after a month with any medication, stop it and switch to another one that is listed in our protocols.

Best wishes always, Forest Tennant MD, DrPh

Dr. Tennant,

Thanks so much for sending excellent information. I still don’t meet a lot of the symptomology and with a 10+ year history of gut issues, inconclusive autoimmune concerns, and being super sensitive to everything (e.g. Foods, medication, pharmaceuticals), I’m reluctant to start taking steroidal anti-inflammatory meds. I’ll proceed with hormone testing and supplementation as required and am already on a lot of the natural supplements (PEA, curcumin, adrenal). Do you think it’s necessary to add something else in for neuroinflammation, since my sensitive system may not respond well if we don’t know for sure it’s AA? Have you seen cases have such a slow progression as mine where it’s all spinal stiffening and minimal or no other symptoms in the extremities etc?

Thank you again so much for your help. N  

ANSWER

Dear N,

Please forgive my delay in answering but I’ve been swamped since we issued our new protocols.  First, persons with adhesive arachnoiditis (AA) and/or Ehlers-Danlos Syndromes (EDS) usually have significant stomach, intestine, and dietary issues.  Why?  AA interferes with the multiple and complex neurologic connections between the spinal cord and the stomach and intestine.  EDS causes deterioration of stomach and intestine connective tissue.  Autoimmunity almost always follows these conditions.

For the above reasons, patients with AA and/or EDS must often take medications that don’t require swallowing (usually referred to as non-oral).  Today we highly recommend non-oral routes for medication including troches, buccal tablets, sublingual solutions, patches, and injections.

We are always extremely concerned about slow progression in any person who has had typical MRI findings of nerve root displacement, asymmetry, clumping, and adhesion formation.  If these are present, I believe that even a low dose of ketorolac and methylprednisolone once a week should be taken.

Best wishes always, Forest Tennant MD, DrPh

Dr. Tennant, 

I appreciate you responding to me! Can the self-help protocol used long-term in lieu of the prescription medications be expected and to have similar results?

ANSWER 

Dear C,

The non-prescription protocol can be satisfactory under two conditions:

  1. You don’t have a lot of scarring with “dead” tissue that can’t regenerate;
  2. You also do the measures in our handbook to prevent contractures, eliminate electricity, and increase spinal fluid flow.

Best wishes always, Forest Tennant MD, DrPh

Hi, 

I just read your handbook and want to know how I can be tested for Neuroinflammation? Is an MRI the only way to be tested? Do I need to see a neurologist and request an MRI?

I don’t think I have adhesive arachnoiditis – yet – but I had a frightening experience today of electric shocks in my small toe. I was in the shower and it continued for a few minutes after I was dry. This has never happened to me before, but I’ve also been experiencing a very tight sciatic and low back discomfort for a few months (not really pain just soreness). Initially, I had about 5 days of low back pain and then it just turned to occasional soreness which I have right now.

I just want to be tested as early as possible just in case I do have neuroinflammation. Can you please help me to understand how I can at least get started towards a diagnosis (or not) of NI?

Thank you, LM

ANSWER

Dear LM,

You are wise to find out if you have neuroinflammation.  Actually, the technical name for adhesive arachnoiditis (AA) should be “cauda equina neuroinflammation”.  Laboratory tests for inflammation such as C-reactive protein and cytokines are a clue, but a negative test does NOT rule out neuroinflammation.  An MRI can be quite diagnostic if there are abnormalities of cauda equina nerve roots: asymmetry, separation, enlargement, clumping, and adhesion formation.  The best way to diagnose the presence of neuroinflammation are therapeutic trails with ketorolac and methylprednisolone.  I’m attaching some information on ketorolac and therapeutic trials.

Best wishes always, Forest Tennant MD, DrPh

Hello Dr. Tennant,

I have been working with my Primary Care Physician in providing her your Handbook and Protocols. She is part of the Sutter Group, and does not have direct contact with provider sources such as yours. So, I have been getting your material over to her to prescribe my medications, and she has confirmed two more cases of AA based on your testing instructions. Could you send me the 10th edition of your latest protocol, so that we can review your findings?

Also, I have been getting some promising results taking Low Dose Naltrexone, after stopping my opioid medication, along with Medrol® twice weekly. About 30-40% less pain now, with just 1.5mg LDN. and 2mg Medrol®. Thank you, R

ANSWER

Dear R,

I’m not surprised you’re getting good results with low dose naltrexone and methylprednisolone (Medrol®).  The former reduces pain and the latter suppresses neuroinflammation.  Now you need to add a hormone, such as pregnenolone, that regenerates nerve roots.

Best wishes always, Forest Tennant MD, DrPh

Hi, there —

I’m not sure whether you are still accepting questions, but I will give this a go just in case. I was involved in an auto accident in late 2012 resulting in a T11 burst fracture and spinal fusion from L1 to T12. Muscle weakness that I anticipated would return never did (e.g., calf atrophy, severe ankle weakness, and something along the lines of a trendelenberg gait). I did have issues urinating following the removal of my catheter, but this returned to its new normal a few months later.

Fast forward to 2019 and I began to have a crawling feeling on parts of my leg. I had an MRI with contrast and visited a neurosurgeon who diagnosed me with arachnoiditis.

I have never taken any sort of pain or inflammation medication. Is this something that I should be doing? I assume that it is far too late to prevent the effects of arachnoiditis, but I wonder what I can do to avoid progression. Thanks! C K

ANSWER

Dear CK,

I’m very glad you wrote.  Once diagnosed with arachnoiditis, you must immediately start the 3-component treatment protocol.  Since you are not on opioids, I highly recommend you start low dose naltrexone and have therapeutic trials with ketorolac and methylprednisolone.  I’m attaching our 3-component medical protocol to share with your physicians.  Also, we have a self-help protocol of non-prescription drugs in each component.  You can get started.  Delay in treating adhesive arachnoiditis is a set-up for disability, disillusionment, and early death.  Our website is filled with education material for you, your family, and physicians.

Best wishes always, Forest Tennant MD, DrPh

Dr. Tennant:

Good morning. Is the ketolorac troche still hard on the GI? I currently am doing injections but would love an alternative? Thanks for taking my question, LE

ANSWER

Dear LE,

Ketorolac troches by-pass the gastrointestinal tract with the exception that you might swallow a small amount which has dissolved in your saliva.  All AA patients should try to take as much medication as possible by non-oral means.  Troches are terrific!! What’s more, I consider ketorolac almost essential to control the neuroinflammation of adhesive arachnoiditis.  One needs to take ketorolac only 1 to 3 times a week.

Best wishes always, Forest Tennant MD, DrPh

Dr. Tennant, I’ve been taking your recommended OTC herbals for about a week. (Pregnenolone, Serrapeptase, Curcumin, GABA, Colostrum, Adrenal Cortex fractions, DHEA, and Valerian).

What I have noticed is, that I do not set my timer for the next time I take my Norco (10/325 mg). Between my spinal cord stimulator and the OTC’s you recommend, my pain is back under control. I now take it AM, PM and midnight (my bladder is such that I get up 2-4 times a night, thanks to my cauda equina syndrome from 1999 causing neurogenic bladder). MJ

ANSWER

Dear M,

Your letter made my day.  Why?  We have physicians and patients who still believe that AA is hopeless and untreatable.  Now that we understand neuroinflammation and neuroregeneration/anabolism, practically all AA patients can get some relief and recovery with non-prescription medication.

Best wishes always, Forest Tennant MD, DrPh

Hi there,

I came across your website and Foundation after the devastating news that I probably have AA (due to an MRI that showed clumping of the right cauda equina nerves and a neuroma in the nerve sac). I also have EDS, and I saw that your site mentions that as well. Is there a link?

I do not understand how I got AA. Everything I read says it is due to a trauma – normally medical. Due to being badly mistreated by the medical community at times (although now having found wonderful doctors since my EDS diagnosis) I tended to avoid doctors, and despite having chronic lower back pain for twenty years, I avoided the suggested injections, steroids etc.

The MRI was to look for spinal laxity (which was found to a large degree in my cervical spine) and I added a lumbar MRI because my physician told me that exercises were making my pain worse. I now have nerve tingling/numbness in the saddle area.  The MRI showed concave scoliosis to the right, along with tethering and some clumping of the nerves, indicative of either arachnoiditis or due to the scoliosis (that’s what the radiographer said).

So could my clumping and tethering solely be due to the EDS as I do not have any other major causal reasons – other than one fall on my lower back in my very early twenties when I was told I had bruised my coccyx.

Thanks for the work you do, Regards. S

ANSWER 

Dear S,

You should be aware that EDS patients frequently develop AA.  I’m attaching a report on anabolic therapy which explains why EDS will commonly cause AA.

Be clearly advised.  There are many myths and erroneous beliefs about AA.  Until recently there has not been systematic studies.  You are correct when you say that the old literature essentially states that AA only occurs after trauma to the spinal canal covering (e.g. dura, and arachnoid layers).  Today the most common cause is chronic herniated discs and stenosis which causes the nerve roots to rub on each other producing friction followed by inflammation and adhesions. The other major cause is genetic connective tissue disorder of the EDS type.  Since you have both EDS and AA, you will need to be on a vigorous anabolic therapy program.

Best wishes always, Forest Tennant MD, DrPh

Dr. Tennant,

I am walking, doing yoga, have a 10-year old and 16-year old, and I am a college instructor full time. So, I am busy. I am a 43-year old mom. I am not willing to let this disease win, but I need you to tell me what you think. Is this arachnoiditis? Adhesive arachnoiditis? The pain management doctor I was seeing who administered the epidurals was pushing a Spinal Cord Stimulator. I have since walked away from his practice. My primary care is treating me with 4 Percocet® a day, a topical cream that includes gabapentin, lidocaine, and prilocaine, and the supplements in your handbook (pregnenolone, turmeric, magnesium, DHEA, ALA) and 5-MTHF. I had a stem cell transplant in December. I am just trying to save my own life.  R

ANSWER

Dear R,

First, your MRI images show classic nerve root displacement, clumping, and adhesions to the spinal canal lining (arachnoid). Based on your history, symptoms, and MRI’s you have lumbar-sacral adhesive arachnoiditis (LSAA).  You are already taking some medications in all 3 components, so you have started to develop a good medical program for relief and recovery.

There is something you should clearly know. Our research has revealed that only the patients who took at least 2 of the following drugs achieved a lot of recovery:

  1. Ketorolac

2.  Methylprednisolone (Medrol®)

  1. Human Chorionic Gonadotropin
  2. Nandrolone
  3. Low dose Naltrexone (you can’t take this if you are on opioids).

I am attaching our latest medical protocol for you to present to your physicians. Also, please familiarize yourself with therapeutic trials with ketorolac and methylprednisolone.  You will need, in my opinion, at least one if not both of these potent suppressors of neuroinflammation.

Best wishes always, Forest Tennant MD, DrPh

Dr. Tennant,

My arachnoiditis was picked up on a CT myelogram, (MRIs done this past October showed no indication of arachnoiditis) that the doctor felt was necessary as given the number of surgeries I have had. Hindsight being the truth teller, if I had an inkling that arachnoiditis was involved I would have never consented to the CT myelogram as I feel that my symptoms were aggravated by the dye. I am trying to do my best to slow down the progression of this disease and regain some semblance of function like I had before all this started. I find it amazing that you have dedicated so much of your medical life to fighting this disease and hope there are other doctors out there who will also take up the fight to find a solution to this disease. My layman’s advice to anyone thinking about any back procedure is simply DON’T! Only if it is medically necessary for preservation of function should one consider a spine surgery or injection. I would have gladly put up with the sciatica that started this whole misadventure if only I had known. I feel that it should be mandatory in pre-surgery consulting to advise the patient of the possibility of arachnoiditis.  I sure wish I had been told of the possibility.

Again, thanks for your help, if not for your dedication to this cause, there wouldn’t be anywhere for those of us stricken with this disease to turn to. B

ANSWER

Dear B,

Please excuse my delay in responding, but I’ve been swamped since our new, 10th edition protocol went out. You asked about curcumin and kidney disease.  I’ve never seen it be a problem.

I like your admonitions about spine surgery and epidural injections.  They are simply overused.  Also, I don’t believe the medical profession is using all the tools available for chronic back problems such as electromagnetic and homeopathic therapies.

Best wishes always, Forest Tennant MD, DrPh

Dr. Tennant, I’ll keep this brief. Do all steroids that have gone into the CSF cause Arachnoiditis? I had epidural steroids (kenalog) for L1/2/3-disc degeneration. The procedure went wrong, and I ended up with full spinal block, I am now 7 weeks post-op and have been very unwell with lots of symptoms. Does this mean I will definitely develop AA? I am so desperate and need some advice Thank you in advance, LF

ANSWER

Dear LF,

We recommend that any person who has symptoms after an epidural or spinal tap take the emergency treatment. The specifics are shown in our handbook.

You should have no symptoms after 7 weeks post procedure. In particular we recommend a 6-day Medrol® Dose Pack and 2-3 daily injections of ketorolac. You can’t hurt yourself and you can almost always prevent arachnoiditis.

Best wishes always, Forest Tennant

Thank you, Dr. Tennant,

I am going to attempt to call all of the doctors in my area in hopes I can find at least one that has enough knowledge on Arachnoiditis in hopes they can help me with this.  In the meantime, I will do my best doing the non-pharmaceutical approach to the treatment protocol.  I do have a question about the latest handbook.  I see you have colostrum listed in the section for neuroregenerative agents to help assist the growth of damaged nerves.  So, colostrum passes the blood brain barrier?  Does it really matter what brand or kind?

DV

ANSWER

Dear DV,

As of yet I don’t have enough information and experience with colostrum to be very specific about brands.  It is a natural substance so it should cross the blood brain barrier.

My best experiences are limited but instructive.  I am personally aware of a few severe EDS and AA patients who have taken colostrum for some time and have done remarkably well.  In fact, in some cases they should have ordinarily died or become bed-bound when they have, instead, thrived quite well.  Let me know about any personal or related experiences that we can pass on.

Best wishes always, Forest Tennant 

Dear Dr. Tennant,

Thank you for so quick a reply! This is a very interesting read. Lots of things I have been doing intuitive, like soaking a lot, stretching, walking, eating Pregnenolone (not enough)…

I also experience relief with everything that deepens my breath, like exhausting gym, cycling and singing!

I was reading at some other place that many AA-sufferers also have Colitis (Crohn´s or ulcerative). I myself am suffering of lymphocytic colitis (which was long mistaken for irritable bowl) and experience worsening of backpain and stiffness when I eat food, which my bowl does not like. With a pretty restrictive diet (no grains except oats and rice, no oil seeds, no salads, best only cooked vegetables, raw fruit are alright), I can control the colitis and the backpain pretty well. When fasting for several days, I will nearly feel healed until I start eating again… (I seem to tolerate milk without problems and do not need to watch my weight, BMI being19.5).

Thanks again and have a pleasant Sunday!

MR

ANSWER

Dear MR,

AA routinely causes some stomach and intestine problems.  The major reason is that some of the nerves that control the stomach and intestine may get entrapped in the adhesions of the disease.  AA can also cause centralized pain and an autoimmune disorder that can lead to the very problem you describe.  You have found a remedy and solution that other AA patients should know about.  Thanks for sharing.

Best wishes always, Forest Tennant

Hello Dr. Tennant,

I’m happy to report I’m doing very well. The symptoms I reported to you a few months ago have almost completely cleared up, except I still have diffuse twitching all over my body, especially in my feet and some mild tightness in my back that comes and goes. It is easily controlled with tizanidine. I’m not in any pain and have no trouble moving or any neurological deficits. Surprisingly, the mild headaches and pain in my groin area disappeared a couple weeks before I saw my pain management doctor. Even with the two-week absence of pain and headaches, the doctor prescribed me 1.5mg LDN (three times daily, total 4.5mg) and 2mg methylprednisolone (once daily). I also tolerate robust physical therapy, including lumbar traction and electrical stimulation needles in the lumbar without any pain. I haven’t been in any pain since I first corresponded with you (mid-January) and before pain mgt and physical therapy. I work a full-time job as well.

Given my excellent condition, lack of possible early ARC progression and mild enhancement of my MRI images, I want to know your thoughts on my long-term prognosis.

Additionally, I have asked my doctor about prescribing me pentoxifylline as part of your protocol to dissolve early clumping. My doctor is very eager to experiment but asked me to get an explanation from you on how it will work and its efficacy. My doctor said it might be contraindicated because it increases blood flow which could increase swelling in the cord. If not pentoxifylline, would you recommend anything else from your protocol? Perhaps a neuro-regenerative agent such as oxytocin? I do not require any pain relief agents. Lastly, do you think I could take all 4.5mg of the LDN in one dose? It would be cheaper to get them compounded in that dosage vs 1.5mg.

Thank you, T 

ANSWER

Dear T,

I’m delighted to hear your progress.  If 4.5 mg of LDN doesn’t upset you, a single dose is fine.  Your long-term prognosis is excellent.  You have probably prevented the development of full-blown AA.  Although pentoxifylline might help, I believe some of the natural hormones and anti-neuroinflammatory agents taken on 3 to 5 days a week are options.  For example, curcumin or serrapeptase are excellent anti-neuroinflammatory agents.  DHEA (200 mg) or pregnenolone (100 mg) on 5 days a week would be good natural hormones for neuroregeneration.

Lastly, at this stage all you may need are physiologic measures such as a walk-a-day.

Keep us posted.  You are a good example of what I want all of medical practice to know.  “If you develop headache, burning pain, foot pain, twitching, jerking, or bladder difficulties, start AA treatment to prevent its full-blown development”.

Best wishes always, Forest Tennant

Hello Dr. Tennant,

I’ve been getting unbearable pain from cars passing. It is upsetting and brings the pain to ridiculous levels.  I can’t find anything about it online.  I don’t think doctors understand when I tell them.  They dug up the sidewalk outside my house, and it was a 15-hour pain flare.  The next day any vibration is intolerable.  What can calm that down?  I got so depressed from the pain and when a car passes and puts me in more pain.  I’m on a Medrol pack now but after yesterday it may have well stopped working.  My back is so irritated.

Thank you, R

ANSWER

Dear R,

You well describe the problem of vibrations triggering pain in AA.  This is a bigger problem than generally recognized.

First, I believe that AA patients who are sensitive to vibrations have retained electricity and considerable nerve damage.  I recommend you use magnets and copper daily.  Wearing a copper bracelet or anklet may help.

You will need to find a medical agent that will reduce vibration sensitivity.  One natural, herbal remedy is Valerian Root.  Prescription agents to try are: gabapentin, tizanidine, clonidine, Valium®, Soma®, Vistaril®.

If you find a remedy, let me know and I will share it.

Also, you mention that pain has returned as you are into the latter period of the 6-day treatment. This tells me you need to be on methylprednisolone, 2 to 4 mg, on 3 to 5 days a week.

Best wishes always, Forest Tennant

Dr Tennant,

Thank you for the advice on the brace. It does help. Can I ask another question?

The Dr I’m seeing is setting me up for a trial/testing for a spinal cord stimulator. What are your thoughts on this?

P

ANSWER

Dear P,

I only recommend a spinal cord stimulator in patients who have a full treatment program of medication and physiologic measures.  The medication program must contain drugs from these 3 categories: anti-neuroinflammatory, neuroregenesis, and pain control.  Once on a comprehensive program, then give a stimulator a trial.  Remember: a stimulator can only give you short-term, symptomatic relief.  It does not treat your underlying problems which could last a life-time. Put another way. A stimulator should only be considered an adjunct or addition to a comprehensive medical program.

Best wishes always, Forest Tennant

Dear Dr. Tennant,

Any thought on hydration? I drink over 100 oz. a day. I use the hydrate bottle system and my profile dictates that amount.  My diet is quite consistent with the diet outlined in the report given in this email.

Thank you, PJ

ANSWER

Dear PJ,

Thanks for your experience with hydration. It is probably an overlooked aspect of proper therapeutics. Why? Any disease with the term “it is” means inflammation. One of the damaging aspects of inflammation is the shedding of toxic tissue waste into the spinal fluid, blood, and lymph. Good hydration rapidly eliminates this toxic waste and allows healing and pain relief to take place.

Thanks, Forest Tennant

Hi Dr. Tennant,

I am still taking my hormones daily and I was wondering what you would recommend for the continuous electrical current that I have down my left leg. It gets so bad that I’m nauseated from the pain.  My surgeon has me on Percocet 5/325mg three times a day but that doesn’t even touch it.  I had L1 thru L4 fused on 9/20/18 that gave me Arachnoiditis by dropping bone fragments down my spinal column.  Will I ever be able to get rid of the electrical current pain?

Thank you, DA

ANSWER

Dear D,

Electrical currents and jerking movement occur in many AA patients.  There isn’t any one agent that will stop them. You need to rub your leg with a magnet at least a couple of times a day. A copper ankle or shoe insert may help.

I’m collecting reports on agents that some AA patients found helpful.  I have received positive reports for: 1. hydroxyzine; 2. ketamine; 3. carisoprodol (Soma); 4. tizanidine.  I believe you will have to sequentially try different agents to find one that works for you.

Best wishes always, Forest Tennant

Dear Dr. Tennant! 

I found out about binaural therapy by accident.

I was suffering some incredibly weird sensations, so I decided to google nerve regeneration symptoms and bingo.    I can only state my truth to you. There is something of a far greater power going on, when a patient learns to relax, accept, and understand that the awful burning tingling……. is nerve regeneration. Binaural beats approx.. 100hz via headphones is ELECTRIFYING.

Thunder and lightning, binaural beats and electrical discharge to earth. All, though frighteningly painful symptoms, once understood by a patient to be curative,……..your patient is hooked on a free pain relief service.

I add that to your protocols and I am thriving, not just surviving!

The idiots here refuse to accept a separate diagnosis of ELHERS DANLOS syndrome.

Not one will assist me with administrative use of your anabolic therapy.

I truly feel, because I dare to question and refuse to be drugged to point of total dependence and compliance, that I am being stone walled at every opportunity!

I do hope others will benefit from simple YouTube binaural beats. Thunderstorm is absolutely amazing and works for me.

Wishing you and yours,

Good health, sincerely P

ANSWER

Dear P,

Can you supply us with a source to obtain the binaural device?  As you point out, every AA and EDS patient should be on the standard protocol.  Once on it try new approaches (i.e. stem cells, amniotic fluid, electromagnetic, etc.)  Binauaral is new but the theory is good and your experience is most helpful. Please keep us informed. Thank you for sharing.

Best wishes always, Forest Tennant

Dr. Tennant, 

Thank you so much for your response, I will get on the paperwork immediately. But I have one question, what do you think of the “Stem Cell Treatment” they are doing in Arizona? 

KB 

ANSWER 

Dear KB,

I get asked a lot about stem cells, electrical stimulators, and various intravenous therapies (e.g. ketamine, lidocaine, vitamin C).  All these are treatments that may TEMPORARILY provide relief – BUT NO RECOVERY.  I endorse all of these attempts (no guarantee of success) under one condition.  First, be on the standard medical protocol with drugs for: anti-neuroinflammation, neuroregeneration, and pain control as well as a daily routine with physiologic measures such as walking, stretching, and spinal fluid flow exercises.  The bottom line is this: you have a life-time, chronic disease that must be treated on a daily basis.  There is no cure, so forget miracles and develop a practical, day-to-day program of control, relief, and some recovery. Don’t count on a single, measure.

Best wishes always, Forest Tennant

Hi Dr. Tennant,

I just found this Turmeric Tea and one serving has 750mg of Turmeric and black pepper extract. In many in-depth articles it says in order to fully absorb Turmeric it must be taken with a fat or black pepper. This is another great way for your patients to take Turmeric. I’ll be posting this on my Intractable Pain Self Help Group as well.

D

ANSWER

Dear D,

Thanks for the tip on Turmeric Tea.  I’m posting your “self-help tip” on my website and I’m glad you are posting it on yours.  We need to share as many tips as we can. Given the dysfunctionality of our health system every patient with AA or other debilitating, chronic diseases need to champion “self-help” as good medical help is getting scarce.

Best wishes always, Forest Tennant

Dear Dr. Tennant,

I suffer from AA. I would like to know if IV gadolinium contrast for a pancreatic MRI could be harmful for my condition. Thank you very much for your kind attention-and for the hope you are giving us AA sufferers. Best regards, DF

ANSWER

Dear DF,

I do not believe gadolinium will be harmful.  Gadolinium has proven to be remarkedly safe.

Best wishes always, Forest Tennant