Monday, August 31, 2009

Connie Keeler request

LWA received an email from Connie Keeler this morning. Connie's email address is and she resides in Tennessee.

Connie says:

"I was diagnosed with Arachnoiditis after an MRI 5/2009. I've had back problems for over 25 years & have received multiple steroid injections, but never any back surgery. Now I'm trying to learn everything I can about Arachnoiditis so that I can deal with this new & rare diagnosis."

LWA: Please respond to Connie. Thanks.

Sunday, August 30, 2009

Welcome Sandie

Please welcome Sandie Buckley. Sandie lives in Massachusetts and her email address is


Thursday, August 27, 2009

Welcome Patricia Uhl

Please welcome Patricia Uhl. Patricia lives in Pennsylvania and her email address is

Patricia says:

"Please help me find help with this horrible disease. I live in North East, Pa. and there is really not one doctor here who understands this problem. I have other problems such as extreme scar tissue neuropathy. I need a doctor who understands and can treat this disease. I now have kidney stones and other painful issues.

Please help me make my way thru this awful situation. I have no life .....I can hardly leave my home. Thank you for any information you can provide. I have had this condition for 6 years.


From LWA - Patty, please reach out to anyone on our members' page listing an email address.

Wednesday, August 26, 2009

Welcome Garry Harvey

Please welcome Garry Harvey. Garry lives in North Carolina and his email address is

Garry says:

"What is this new IV treatment I read about on your blog? My partner was diagnosed with arachnoiditis almost 14 years ago. He has intrathecal pump but doctor is not providing dosage needed to control pain. On some days he takes as many as 18 vicodin and even this doesn't help. Thanks for any suggestions. Garry"

Welcome, Garry.


Sunday, August 23, 2009

Input re newest IV therapy patient

This short message was received two days after this patient's first IV therapy:

"My Mom had her first good night in a long time last night. No pain. She is hopeful, as you can well imagine. I hope that Dr. Holsworth is getting together the plan as he said he would. We are on a roll. May try to change time. I will let you know. Thanks!"

From: Denver patient's family receiving therapy in Monte Vista, Colorado.

Friday, August 21, 2009

Welcome Cheryl Burnett

Please welcome Cheryl Burnett, of Florida. Cheryl would love to hear from members. Her email is

Welcome to our Life With Arachnoiditis group, Cheryl!


Thursday, August 20, 2009

New IV Therapy Patient's Input

Copying in the text from letter received today from the daughter of arachnoiditis patient (Cookie, in her 80's!) from Denver, Colorado. They flew from Denver, Colorado into Alamosa, Colorado on Tuesday for a consultation with Dr. Holsworth and this patient had her first IV therapy treatment:


Thrilled that we had the opportunity to meet and visit with you. You are so smart, a phenomenal role model and will always hold a special place in our hearts. Seeing you in your present state and knowing what you have gone through to get there, is astounding. The whole thing does seem to be miraculous....but, through you alone, Dr. Holsworth has proven to be just that; a miracle worker.

He is certainly a brilliant man and we feel so fortunate to have had the privilege of spending time in his company (and yours!) and listening to his unique and positive perspective. Up until now all we have heard is negativity; pain pills, more pain pills and incurable. The fact that Dr. Holsworth was a scientist before becoming a doctor gives him an ability that most Doctors do not possess. His knowledge and thought process far succeeds anything I have ever encountered in the medical world.

Of course, it is way too soon to tell if this protocol will be as miraculous for Mother as it has been for you. But, at least we have SOMETHING that looks promising (that is non-invasive and harmless!)....and the fact that the Doctor said, if this combination does not do the trick, there are many others to try. How amazing is that?

We will be coming next week to get Mom's second treatment and will get the necessary information from Dr. Holsworth as to who he recommends we see in Denver to carry out his plan. He appears to be very forthcoming and willing to share his ideas with other doctors closer to our home. To me that is not only a humble doctor, but a remarkably caring person.

Thank you for taking the time to tell your story online and make yourself available to those who need to hear it. And, too, thank you for the time and effort you put forth to come to the clinic, meet us and be an integral part of our experience. Most of all, thank you for giving Mother hope......if nothing more. Yesterday I saw a very happy lady, because of you. If it were not for your reaching out, we would be in the same place that we have been for a long while. Thank you just doesn't touch it....."You," as my Mother put so beautifully, "are our angel."


Please direct correspondence to or if you wish to write to Karen directly you may email her at

LWA is on Facebook under Life with Arachnoiditis. We invite you to become a fan. You may participate in discussion groups on that page or start a new discussion of your own.


Wednesday, August 19, 2009

Please welcome Vicki

Please welcome our new member, Vickie C, of Nevada. Vicki would love to hear from you. her email address is

Vicki says:

"I'm using Suboxone now for pain relief until I undergo a spinal stimulator trial in September. I have really weird symptoms, like I break out into nasty ice cold sweats all over, strange sensations in my legs and buttocks, urological control issues too. I wanted to recommend Suboxone for those people wanting to get off heavy opiates and have a quality of life. I am able to drive, read, converse, be a part of my family, whereas on 180 mg oxycontin a day I was pretty much a veg. Thanks--Vickie"


Tuesday, August 18, 2009

Three Patients undergoing IV therapy - another soon

This is a short update on IV therapy.

To date, three patients are undergoing IV therapy at one level or another. ALL have shown some level of improvement in pain level upon administration of the IV protocol. Not all have been able to obtain regular treatment within the United States and European medical system. The largest obstacle seems to be the awareness of the reasons why the protocol can help as well as lack of physician knowledge of basic chemistry and biology!!

A new patient is scheduled to begin IV therapy today in Colorado. Karen Kovacik is meeting with this patient and their family this morning. We will report back as we know how this patient reacts to IV therapy.

PLEASE, your prayers for guidance and enlightenment are needed in this quest. As you must know, this is new and we need a true break. Nothing else is working ..... anything that has a chance at improving quality of life needs exploration.

Our experimental group is soon to be N=4.

Your *positive* comments are welcomed and INVITED.


From Karen Kovacik: "Personal replies and input may be sent to Karen at - Please REMEMBER, I am an AA patient as well with the same struggles you experience. I will NOT respond to any negative email. It is a full time job to keep up with AA patients that write me personally. It is my mission to offer hope to each and everyone reaching out to me. We must find answers!"

Monday, August 17, 2009

Please welcome Connie Keeler

Please welcome "Connie" Keeler of Tennessee. Connie's email address is

Connie says:

"I have just been diagnosed with arachnoiditis - felt to be caused by intrathecal steroid injections for post herpatic neuralgia. I'm having trouble finding information about treatment and prognosis. My neurologist has never seen or treated anyone with arachnoiditis; and knows of no MD that has. I'm searching for answers."


Welcome Pet Campbell

Welcome our new member, Pet Campbell. Pet resides in Florida and her email address is:

Pet's spouse has arachnoiditis, osteomyelitis and diskitis.

Pet would love to hear from members.


Saturday, August 15, 2009

Welcome new member, Suzie

Please welcome Suzie of California. Her email address is

Welcome, Suzie.


Thursday, August 13, 2009

Welcome Carl Fisher

Please join us in welcoming Carl Fisher of Ohio.

Carl's email address is


Welcome Alex Parou

Please welcome Alex Parou. Alex resides in Pennsylvania and his email address is

Alex says:

"I have just been diagnosed with arachnoiditis and have had two previous back surgeries in the same area. My pain is slowly getting worse and would like to know what options for pain management are available?"


Welcome Joe White

Please welcome Joe White of Pennsylvania. Joe's email address is jgtxjoe@aol.comm. Joe would like to hear from other members.

Joe says:

"I am 50 years old. I have been fighting back issues since I was 17. I was born with Spinal Stenosis. I have had 4 back surgeries last one with fusion all in the last four years. Now fighting Adhesive Arachnoiditus. Have been trying pain meds for 8 months. Up to a 75mcg Fentanyl Patch now. Also taking Percoset, Ibupropin 800mg (3/day), and Nortryptolene, for break through pain. Still spend most days lying down or in bed.

Dr has prescribed the Medtronics Mophine pump. I have heard mixed reviews. Would anyone like yo tell me their experience with them. I have had the psychological exam and all is OK. It is up to me now.

Any feedback is greatly appreciated.

God bless you all!!!!!Hope you have many good days!!!!"


Welcome Carla Rae Caswell

Please welcome our new member, Carla Rae Caswell, of Wyoming.

Carla's email address is

Carla wishes to be contacted by email.

Welcome, Carla.


Wednesday, August 12, 2009

Welcome Dr. Grace Brame

Dr. Grace Brame of Delaware has a friend with Arachnoiditis. Dr. Brame's email address is

Grace says:

"My friend has ARACHNOIDITIS. After 9 years following a laminectomy, my friend finally received the diagnosis of Arachnoiditis. She is in constant, terrible pain, and her doctor will give her only 1/3 of the normal prescribed amount of controlled medicine. (He says it might hurt her heart. Another knowledgeable person says he does not want to be investigated by the government.)


WHERE IS THE BEST PLACE/DOCTOR TO GO TO? - I am investigating Dr. J. Antonio Aldrete in Birmingham, AL who wrote the book: ARACHNOIDITIS: THE SILENT EPIDEMIC. I am also looking at the Cleveland Clinic, Duke University Medical Research, and Washington University in St. Louis. There is also a place in Maryland which I intend to find. We live in Wilmington, Delaware.

We are looking for a doctor who will tend her case comprehensively, speaking to or reading the reports of all those who are attempting to assist her with her 8 to 9 constant pain level.

MY DEEP THANKS to anyone who really can help.

I cannot afford to just chat because I must get my work done. (I am an academician, not a medical doctor.)

Blessing, GB"


Welcome new member - Traci Daniels

Please welcome Traci Daniels, email Traci lives in Ohio.

Traci states:

"Just newly diagnosed with Arachnoiditis, actually go see the doctor on Aug 18th. The ortho doctor that sent me for the MRI and then another MRI is referring me to Dr Deshpande. I have only read about this disease, have not actually sat down with any doctor yet.

I'm really scared and unsure what my future holds. I'm trying to stay positive and praying everything will be okay."

Please feel free to email Traci.


Tuesday, August 11, 2009

Kovacik Update

Co-Founder, Karen Kovacik, has an update to August 11, 2009 on her Progress Page which is found on the 3rd page of her bio at

There is also information posted on that page on how to contact Karen personally through Facebook.


Tuesday, August 4, 2009

New members

LWA has new members. We will be posting the end of this week.