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 & Education Project“.

You may send your questions to [email protected], fax to 626-919-7497, or mail to:

The Tennant Foundation

Arachnoiditis Research Project

336-338 S. Glendora Ave.

West Covina, CA 91790-3043

YOUR QUESTIONS AND OUR ANSWERS ARE UPDATED FREQUENTLY

Dear Forest Tennant

It took some time, but I had to find a doctor who would be willing to have my blood tested for Epstein Barr virus. I managed to do this and the conclusion of this doctor (neurologist).

“The results came to us May 5 and the conclusion was that you have had an infection with Epstein Barr virus in the past, but it is not active now. Specifically, the IgG (EBNA) was positive, IgM (VCA) negative and IgG (VCA) positive. There was no further quantification of how very positive the tests were. Since almost everyone has been infected with this virus at some point, I find it difficult to say that this has any specific meaning.”

Now I want to ask you, what does this mean? This doctor now does not know how to proceed. Does it mean that I have Adhesive Arachnoiditis? Tomorrow, I have an appointment at the center for Myalgic Encephalomyelitis (ME) in Amsterdam. Because I am so extremely tired.

I hope you can still tell me what you think is wrong with me.

Kind regards, KJ

ANSWER

Dear KJ,

Qualitative testing for Epstein Barr Virus (EBV) is worthless. Almost everyone will have your results as everyone is infected with EBV at some time in their life. The fact is, however, that some persons go on to harbor the virus or its analogue in lymphocytes, and therefore the virus will reactivate just like the herpes viruses that periodically cause cold sores or shingles. EBV can grow in the lymphocytes and produce autoantibodies that attack the collagen in spinal canal tissues producing herniated discs, multiple sclerosis, and AA. This particularly occurs if you have EDS, scoliosis, or experience a traumatic event such as surgery, an epidural injection, or spinal tap.

You and all other persons with AA and Tarlov cysts need a QUANTITATIVE EBV antibody blood test. If your level is 3 to 5 times normal, you need to take measures to control the virus.

Best wishes always,
Forest Tennant

Hi,

I just read your bulletin on ketorolac for spinal inflammatory reduction. I have many spinal issues and AA. I have tried ketorolac injections three times and on the second and third time I had extreme stomach pain. My doctor and I are very wary of trying it again due to this reaction. I have taken oral Voltaren 50 mg and have not had any stomach pain with this. I have read that Voltaren passes the blood brain barrier and is good for reducing inflammation in spinal cord. Is taking oral Voltaren a good substitute for ketorolac, as I cannot take ketorolac. I want to reduce spinal inflammation without Ketorolac.

Thank you for your help! KT

ANSWER

Dear Karen,

Unfortunately, some people just can’t take ketorolac. You and your physicians are quite wise to switch to diclofenac (Voltaren). It is now our starting anti-inflammatory for the reasons you state (See Bulletin 27 on our website). Also, we advise that one or more botanical-herbal agents that act on the spinal canal be used. Popular agents are curcumin/turmeric, andrographis, and boswellia. Why two? AA primarily affects two different tissues: (1) cauda equina nerve roots and (2) arachnoid-dural (meninges) spinal canal covering. Also, almost all cases of AA are associated with inflamed intervertebral discs. It’s the old saying, “Different strokes for different folks.”

Best wishes always,
Forest Tennant

Dr. Tennant,

For both male and female patients, is the alternative protocol to the IV methylprednisolone all three agents being used simultaneously, or just one option of the three listed? If one agent is to be used rather than all three simultaneously, if the patient is still symptomatic after completing the single agent regimen, can you choose to try a second and third trial with one of the previously unused listed agents? It wasn’t completely clear, so I wanted to be sure.

Dr. JS

ANSWER

Dear Dr. JS,

I use all three agents simultaneously for 5 to 10 days, and then switch to our regular protocol. While ketorolac and methylprednisolone are now standard in AA, I don’t know exactly what role medroxyprogesterone should play. It may be a real “clinical sleeper.”  Progesterone has been very helpful in some patients with stroke and head trauma. I don’t have a lot of long-time experience, but I’ve seen a few patients remarkably lower their pain with medroxyprogesterone at a 10 mg daily or BID on 3 to 5 days a week. Perhaps we should all give this anabolic hormone some trials.

Best wishes always,

Forest Tennant

Good morning,

My doctor has agreed to prescribe medications based on your protocol.  My questions are as follows:

  1. Ketorolac troche-30 mg once a week, when do I take this?  Morning/night and what day of week?
  2. Methylprednisolone 4 mg 3xweek- when do I take this?  3 consecutive days or split it up during the week?
  3. HCG. I cannot find this but I can find Pregnyl.  Is this the same and what is the dosage I should be taking and how many times a week?
  4. LDN. 4.5 I have been taking this at night for a year now.  Your protocol states 4.5 mg morning and night.  Is this right?

Please help with any information you can provide me.

Thank you again!!!! S

ANSWER

Dear S,

Pick one day a week for ketorolac.  It doesn’t make a difference which day as long as you stay with the same day each week.  always skip at least one day between methylprednisolone and HCG (Pregnyl) days.  I suggest Mon, Wed, Fri for one and Tues, Thurs, Sat for the other.  The starting dosage of HCG is 250 units.  Low dose naltrexone can either be taken once a day or split the dosage.  Time of day doesn’t matter as far as we can tell.  The maximum dosage we have encountered is 7.0 mg taken in the morning and evening for a maximum dosage of 14.0 mg a day.

You have an excellent protocol that gives you some relief and recovery and certainly keeps you from progressing into the severe catastrophic stage.

Best wishes always,
Forest Tennant

Doc Tennant

How you and the Mrs. are doing well.

There has been some talk on the support group about wearing the magnet jewelry. As you know, I have been wearing copper/magnet jewelry for a year. And I have encouraged others. Someone mentioned that she read somewhere from you that the magnet jewelry should only be worn two hours or could cause more pain. Is this correct? After clarification from you, I will let them know. If that is the case, is that all it should be worn in a day or how much time between putting it back on?

Thank you for this clarification.

Have a great day! BW

ANSWER

Dear BW,

Yes, I have warned persons about this possible development. Copper attracts electricity so a copper bracelet or anklet can collect enough electricity to cause pain at the site of the jewelry. This is easy to remedy. Just take off the jewelry every couple of hours and rub it on some cloth or run water over it. I know it’s old fashioned and hardly “high tech”, but it really works in some cases. Keep in mind that AA is an inflammatory, nerve entrapment disease that collects and retains electricity at the site of the disease. Old fashioned copper and magnets are a simple tool that never hurt anyone but helped a lot.

Best wishes always,
Forest Tennant

Hello Dr. Tennant,

This is R. As you probably know I was getting very sick when they stopped all medications without any warning.

I suddenly remember an email I had got from you about Kratom.

I got the best I could get my hands on.

I bought four different kinds.

I started taking

  1. Super Red Vein “2 grams’ it is for sever pain, helps mood, and gives a little energy.
  2. Super Green Vein 2 grams’ Long-term energy, Mental alertness, motivation, and pain relief.
  3. Super White Vein, exceptional energy, focus, minor pain relief from aches and pains, & mood boosting.

Dr. Tennant within 30 minutes my life went from hell to very great. I could not believe it, but you were so right. I haven’t slept this good like I have the last 3 nights in 30 years.

My wife, my daughters were crying their eyes out when we had after church dinner a few hours ago. They could tell such a positive difference in me. I didn’t know how scared they really were I was so sick. As I feel right now you would be hard pressed to get me back on opioids. I am not sure why my body is excepting it so good. I have been able to use the bathroom with no suppositories for the first time in I know 20 to 25 years.

It is unbelievable. I thank you so much I don’t have words to express how much. Matter of fact my entire family said to tell you thank you. I know you had it on your mind, and I wanted to ease that for you, but I wanted to make sure I was right and after 3 days with no withdrawals and pain at a minimum, and only heads up when I stop moving for the evening.

Thank you Dr. Tennant and God Bless You and Yours

ANSWER

Dear R,

Kratom is becoming a lifesaver for a lot of persons with intractable pain. A long list of government agencies and insurance plans continue to try and force doctors to quit prescribing opioids.  Today, in some states, all a person can do is get whatever pain medication their doctors will prescribe and the supplements kratom, CBD, marijuana, and palmitoylethanolamide (PEA).

Best wishes always,
Forest Tennant

Good morning,

I have a few questions:

Can I take Valium and/or soma with your protocol?Where would I get HCG injections?  My primary doctor is stumped.  Is there a particular brand to use?

Have you heard of Hyperbaric oxygen chambers helping inflammation?

Thank you for your time!  S

ANSWER

Dear S,

Valium and Soma are definitely needed in AA.  They are referred to as neuropathic agents and they help regulate electricity in the cauda equina nerve roots.  There are other neuropathic agents such as gabapentin and pregabalin, but Valium and Soma have been the best for a long time.  Please review our “Starting Protocol” in our new handbook or on our website.

HCG is hard to obtain.  Your pharmacist can tell you if they can get it.

Hyperbaric oxygen is highly recommended.  It brings oxygen to the spinal canal.  We have a bulletin on our website about oxygen. You should read it.

Best wishes always,
Forest Tennant

Tennant Foundation,

How will a cytokine panel help and what does it do?

ANSWER

Adhesive arachnoiditis (AA) is an inflammatory disease of the spinal canal that involves the arachnoid-dural covering and the cauda equine nerve roots. Inflammation produces and adhesive mass that entraps nerve roots that leads to neurologic impairments, intractable pain, paralysis, and premature death usually due to cardiac and/or adrenal failure.  Treatment to prevent progression of the disease as well as to achieve some permanent relief and recovery is dependent upon suppressing inflammation.

All persons with AA and their medical practitioners must consistently attempt to determine if the treatment protocol is adequately suppressing inflammation inside the spinal canal.  Blood tests help determine this.  The standard blood tests are the erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP).  Cytokines are inflammatory molecules that either attempt to produce or suppress inflammation, and they can be measured in the blood.  All laboratories now offer a group of cytokines to help determine if inflammation is not suppressed.  A group of cytokines is called a “panel.”  Usually there are about 8-10 cytokines which are called interleukins or tumor necrosis factor. These panels are becoming critical and popular in treating inflammatory and autoimmune diseases such as AA that you can order one on-line such as the new “Merck Milliplex Ovine Cytokine/Chemokine Panel.”

It is essential to order a panel and not try to select one or two because they, like the ESR and CRP, don’t specifically target one individual disease.  Critical to AA patients is that the panels often show elevated interleukins if an intervertebral disc or Tarlov cyst is inflamed.

To obtain a panel, the ordering medical practitioner simply needs to check the laboratory request form.  Insurance usually covers it.

SPECIAL NOTE: Blood tests that show normal levels of inflammatory markers doesn’t mean that AA has been “cured” or doesn’t require treatment. 

Hope this answers your question,

Forest Tennant

Hi again,

I will have the MRI cd tomorrow so I can send it then. I was just wondering, I had a question for Dr. Tennant that I was hoping for his opinion on. There is a neurosurgeon in Germany, Dr Jan Petr Warnke. He has been researching both arachnoiditis and Tarlov cysts for a long time and does surgery for both. He believes that Tarlov cysts are caused by arachnoiditis. Basically, if you have a Tarlov cyst, you have arachnoiditis. What is Dr. Tennant’s view on this? Thank you for your help.

EG

ANSWER

Dear EG,

I believe there are basically two kinds of Tarlov’s:

  1. Genetic-present at birth and not associated with collagen deterioration and inflammation.
  2. Those that result from collagen deterioration and inflammation in the arachnoid layer of spinal canal covering or in a nerve.

I believe anyone with a Tarlov cyst should attempt to determine whether it was present from birth/childhood or acquired later in life.  If acquired later in life, I recommend one try to determine is a collagen-autoimmune disease and high viral (especially EBV) titers are present.  In summary, AA and acquired Tarlov’s are “kissing cousins.”

Best wishes always,
Forest Tennant

Dear Dr. Tennant,

My neck is still very painful.  The ortho-surgeon that I went to, on Monday morning, has ordered a Cat-scan on my neck, so he can see, what is really going on.

Same surgeon said that I am a candidate for “right-sided L5-S1 lumbar microdiscectomy”.  Do you recommend this?  He says that he can get rid of that L5-S1 nerve, that has been burning on fire, for the past 3-1/2+ years.  Something needs to be done, as I can’t take this pain, any longer.  Could this be a successful surgery??  I am desperate for help with this extreme pain.

What are your thoughts??  This is zero-quality of life, suffering 24/7.

Many thanks for all that you do to help us,  PC

ANSWER

Dear PC,

If your surgeon thinks he can help at this point, take his advice.  The new microdiscectomy procedures are proving quite safe and effective.  Also, these procedures usually don’t worsen AA.

Best wishes always,
Forest Tennant

Hello,

I really appreciate all the work you do to help patients with Adhesive Arachnoiditis. I have your book and follow your protocols, which helped me a good deal.

Unfortunately, I have recently started having additional problems with my cervical and lumbar spine, sacroiliac joints, and the joints in my hands, elbows, knees, ankles, and feet. I also had an itchy, bumpy rash on my scalp, behind my ears, and on my neck; and even worse, I had a couple of broken bones in my ankle that still hadn’t healed after 8 months of being in a pneumatic boot and wheelchair. My doctor sent me to a rheumatologist who diagnosed psoriatic arthritis.

Do you know the comorbidity statistics for adhesive arachnoiditis and psoriatic arthritis? Are there specific complications for treating these two diseases together?

Thank you for your help, J

ANSWER

Dear J,

Our studies in the last couple of years have shown that psoriatic arthritis is a cause of AA.  In fact, we have been shocked about the high association of psoriatic arthritis and AA.  We are processing a series of bulletins on collagen-autoimmune diseases as a cause of AA.  Psoriatic arthritis is part of the autoimmunity collagen AA process.  You will need to treat your psoriatic arthritis as well as AA.  Please let us know your progress.

Best wishes always,
Forest Tennant

Dr. Tennant,

I have IPS and EDS.  I take Adderall e.r. 30mg and Adderall I.M. 15mg, when the short acting wearsa down my pain comes back.  Is this normal for this drug? Or does this happen with IPS?  Now that my pain is back, I will ask the provider to up me to 20mg I.M.

Is this normal for people with IPS?  SW

ANSWER

Dear SW,

Adderall® (multiple amphetamine salts) is emerging as almost an essential drug in treatment of IPS.  Why?  Dopamine may be depleted in IPS, and dopamine receptors may also be damaged.  IPS patients with constant pain have attention deficit disorder (ADD).  It may be difficult for IPS patients to interpret conversations, have recall, or even read at times.   If a person has bonafide IPS (e.g. constant pain with some cardiovascular, metabolic, or hormonal complications) Adderall® or  similar agent will be essential for mental and cognitive function as well as pain control.

Best wishes always,
Forest Tennant

Thank you again,

As you are the experts and no one here in the UK has any idea of what to do, can you advise me?  I cannot get any hormones in the prescription part of the protocol.  I am however taking pregnenolone.  My question remains the same (maybe you don’t have an answer) if I am showing calcification does that mean that it will all calcify.  Also, can you see inflammation on the MRI as I keep getting told that I don’t have any inflammation which means I don’t have active AA.  It is so frustrating assuming I manage the first goal how do I go about actually helping what I have wrong with me (more of the same).  Thank you so much for all your time it is much appreciated

Regards, PF

ANSWER

Dear PF,

At this time, we are uncertain as to whether inflammation of AA “burns out” and simply leaves behind damaged, entrapped nerve roots.  Even if inflammatory blood tests are negative, inflammation can still be active and flare.  To be safe I recommend natural, herbal, anti-inflammatory agents. Curcumin-turmeric is the most popular, but others may also help.  Inflammation is a pathologic process that is biochemical in nature. What is seen on MRI is the result of past or current inflammation.  Calcification is part of the inflammatory scarring process and further calcification won’t occur if you successfully suppress intraspinal canal inflammation.

All persons with AA need to regrow damaged nerve roots, shrink the AA mass, and free up some nerve roots.  There are several tissue regrowth measures.  Some hormones are advisable.  The most potent restorative hormones have been, in our experience, HCG and nandrolone.  If your doctors and health plan won’t supply one of these, use two of these four non-prescription hormones: pregnenolone, DHEA, colostrum, deer antler velvet.

Best wishes always,
Forest Tennant

Hi Dr. Tennant!

Last year I was diagnosed with Arachnoiditis, and you confirmed it’s adhesive through MRI images. I’m doing really well, and I don’t have pain most days as long as I follow the anti-inflammatory-protein diet with some reintroductions, take lots of supplements from each category of your protocol and exercise. However, I would love if I could discontinue the supplements I’m on. Have you ever seen the adhesions dissolve and has anyone ever been cured of Adhesive Arachnoiditis?

I’ve been learning about homeopathy through a study group with other moms through Joette Calabrese’s homeopathy program and recently learned about the Banerji Protocols developed by medical doctors in India. I just bought their book and came across a section on paralysis due to a space occupying lesion (SOL). As I mentioned I’m doing great and even can be upright all day without pain aside from laying down for a short time in the afternoon (about 30 minutes) some days. However, I have to follow a very strict healthy diet and take the supplements. Have you ever heard of anyone healing their neuroinflammation and removing their adhesions? I wonder if the Banerji protocols in my Homeopathy book could do this or at least remove the adhesions. Have you heard of anyone doing this through this method? I’ve attached a screenshot of the protocol.

Thanks for reading all of this and thank you for your work! I look forward to hearing back from you! KB

ANSWER

Dear KB,

We have many cases that have recovered to the point that few medications are needed.  We are uncertain if a total cure is possible.

Removing the adhesions of AA will have to be done chemically.  Give it a try.  Possibilities to loosen or dissolve adhesions will have to be homeopathy or a new measure such as stem cells, polypeptides, or chemical infusions.

Best wishes always,
Forest Tennant