This is "My Journey" -

My Decision to "Stand up and FIGHT" - Prior to diagnosis I was experiencing CES symptoms, nerve pain and a host of other symptoms. When diagnosed in 2008, I was devastated. Then I decided, " I'm not a quitter. I'm going to STAND UP AND FIGHT!"   I decided to pull out all the stops and fight like I've never fought before.  **Attitude is everything**

November  2009 (3rd patient has IV therapy): I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising. I am narcotics free over 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. 

For a few months now I have had twice weekly IV therapy. Ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water. 

Almost all leg nerve pain is gone ... most of the time.  It kicks up when I go skiing.  I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart!. The past few weeks I have crawled into bed at night without pain creeping in after a few minutes. I am so thankful and so very humbled by the progress we've made. 

January 2010: I am still able to work and play without pain medication. Still taking 3000mg Robaxin per day. I'm also using valerian root for muscle spasms and taking GABA supplements now. The Patricia Kane Protocol was absolutely helpful to me. I've found I cannot receive both ascorbic acid/magnesium and the Patricia Kane Protocol the same day. I need at least a day or two between the treatments. 

February 2010 (4th patient has IV therapy): This journey has taken me places I never dreamed I would be. Patients from all walks of life have contacted me from all over the world. New friends and new challenges lie ahead. Dear new friendships have been made and I would not have missed these new friends for the world.   I've been able to meet four patients with arachnoiditis.

March 2010 (5th patient has IV therapy): An MRI this month revealed some significant impingement at C3/4-C4/5, just above C5/6 fusion done around 2000/2001. I was able to see Lance Hamlin at Spine Colorado in Durango and he is as awesome as ever! I've started physical therapy and traction at home in an effort to strengthen my neck. Worst case scenario will be surgery at C3/4-C4/5 which I am going to work to avoid at all costs.  Pain medication was required at initial onset for 2 days and has been required several times for extreme pain. I am still battling neck and arm pain as of March 18, 2010 but I appear to be making progress. I've just completed a 5 mile hike today and it is my 5th hike this week.

IV therapy continues and remains the mainstay of my treatment. A new patient has again come on board and also had great initial results to two initial treatments. Connie Keeler in Tennessee remains improved and follows a similar course. It's a long road and there are no "cures," but remission/improvement seems attainable.  This is excellent news.  

April 23, 2010: I continue to battle neck issues although the pain is not nearly as severe as in March. Spine Colorado (Durango) continues to track my progress in three week intervals. I am very pleased with Lance Hamlin, the PA at Spine Colorado.  If surgery is the ultimate route, I remain confident I will get excellent care. We realize surgery is one of the worst possible risks for me with arachnoiditis. Surgery will be considered only after all other options are exhausted. Intermittent pain medication has been used for the neck injury issues (a few times a week) with less than satisfactory results.

This month I traveled to Islamorada in the Florida Keys to visit friends. It required me to miss IV therapy and I went two weeks between IV's. By the tenth day I was starting to experience pain from arachnoiditis (I did not take my liposomal vitamin C and glutathione with me as I did in the prior trip). Within 12 hours of IV administration on my return, my back and leg pain again totally disappeared. I wish the IV therapy had the same effect on my neck injury ... it does not.  I've been hiking 3-5 days a week, weather permitting. As much as I wish I could say IV therapy is a "cure," I feel it is a "roll back" and/or "remission state."  This alone is a Godsend and, for the immediate future, I continue in IV treatment to be able to live a full life.

Last week, another patient was experiencing horrific pain (she was not on IV therapy). She was administered the IV protocol and experienced dramatic improvement in pain levels. The IV therapy continues to demonstrate pain relief in all the patients receiving the same protocol as mine.  This is very encouraging.  I suspect, in time, this protocol might be considered one of the "mainstay" treatments in helping to squelch the inflammation.

May 06, 2010: Things are back on track.  I'm feeling extremely well. The neck issue has subsided, FINALLY.  Back up to hiking 5 days a week (weather is finally cooperating a little bit). I have to say, the hiking is not optional... the endorphins really help the pain levels. No narcotics on board and May 25th will mark the ONE YEAR MARK since I've been off regularly scheduled pain medications! There were maybe 3 or 4 weeks where I had to have pain meds 2 or 3 times within a given week due to the neck injury in March and April.  June 3rd will be a year off diazepam.  WOW.  Now preparing for Congress in July. It is so exciting to be able to go to the Congress meeting and I can't wait to share my path. God is good ... all the time.

June 14, 2010: What an exciting 6 weeks it has been. Ascorbic IV was ramped up to 60 grams, PK Protocol ramped up to maximum levels, bioidenticals on board, chelation once weekly, liposomal ascorbic and glutathione have been back on board for about a month. I feel GREAT.  Robaxin down to 500mg a day. WOW. 

I don't think I've ever felt as much excitement as I do for the upcoming Congress and our trip to Chambery, France. Packing has begun and I leave June 25 for Knoxville, TN to pick up Connie Keeler. We fly to Paris for four days of fun on June 26, then on the Chambery with the rest of our group on July 1. We are READY! 

November 5, 2010: The Congress event was amazing. Transcripts will be available when they are able to be completed ... a long and time consuming process.  I learned at Congress there is another arachnoiditis patient that has gotten his life back through a similar process but without IV therapy.

At Congress, I was privileged to meet Dr. Jan-Peter Warnke, the only surgeon in the world performing a particular type of thecaloscopy for Arachnoiditis.  On viewing the procedure via video at the Congress, it became clear why it may work for patients with no other options.  An Arachnoiditis friend of mine had surgery September 19, 2010 and was "pain free" by mid October.  An amazing accomplishment.  Another great advancement and hope for the future.

A note on IV therapy:  The order of administration of the solutions seems to make a huge difference.  In October it was necessary for me to be away for an extended period of time due to a health emergency with my parents. I had treatment in Florida and they administered the PK Protocol before the ascorbic/mag.  While side effects were far less, pain relief was also far less.  We tried the protocol turned around for 3 treatments .... it does not work well at all for me. I am home and we have reversed the order back to 60 grams ascorbic/4 grams magnesium first, then the PK Protocol last.  There are more side effects, yes, but definite difference in pain relief.  It may take a few more treatments to gain back the ground I lost.  Experimental treatment continues to work for me. 

Dr. Holsworth will be in Washington state and available to work with Arachnoiditis patients. Information will be published soon. I have been left without a physician that truly understands this illness and the new physician has not been willing to administer the PK Protocol as of this date.  Am hopeful this will change. 

November 30, 2010:  The new physician, Dr. Eugene O'Neill, of Rio Grande Hospital Clinic, refuses to read the literature supplied to him on Arachnoiditis on Oct. 19, 2010. Dr. O'Neill is unwilling to learn anything about my disease or the Patricia Kane Protocol. He says he doesn't have the time and his malpractice insurance won't cover it.  On my last visit on Nov. 30, 2010, I brought Dr. Sarah Fox' short paper ....a brief Summary about Arachnoiditis for busy physicians. When I told Dr. O'Neill I'd like to briefly discuss this paper so he could understand why I refuse preventative tests (mammograms, pap smears, other preventative tests), he went into a tirade about the PK Protocol, that he would not prescribe pain medication to even one more patient, how a patient sued him for saving his life, how 80% of the local population of patients in Monte Vista, Colorado are seeking narcotics and selling them, and said maybe I should go to Washington to see Ralph Holsworth.  Never have I met a physician that cares about his patients less. 

December 3, 2010:  Received a call from Dr. Ralph Holsworth yesterday. He has located a new provider for me familiar with the PK Protocol and willing to administer the ascorbic/mag IV.  THANK GOD. Dr. Holsworth has also made some progress with making contact with a fairly well known stem cell specialist and has a telephone conference set up with him on Dec. 7 to discuss the possibility of stem cells for me and other Arachnoiditis sufferers. We are also exploring the addition of Pyrroloquinoline Quinone. As of January 1, 2011, Dr. Holsworth will be treating Arachnoiditis patients at the Tahoma Clinic. Dr. Holsworth will also be continuing research on Arachnoiditis and will continue his work with Arachnoiditis USA, Inc.  Contact information for Dr. Holsworth follows:

Tahoma Clinic
801 S.W. 16th Street, Suite 121
Renton, Washington 98057
Clinic Telephone  425-264-0071
Clinic Fax  425-264-0071

Contact and Updates:

To stay updated on my activities, send a friend request on Facebook. Look up Karen Odom Burkley Kovacik and in your friend request message box, please identify yourself as having read my bio on Life With Arachnoiditis and I will accept your friend request.

Go to www.acam.org to learn more about alternative medicine.  I've learned the "impossible just takes longer!"  I am very close to having my life back ... it will be a life long journey I believe.

Karen Kovacik
South Fork, Colorado
info@lifewitharachnoiditis.com