Sunday, May 31, 2009

New Clinical Trials Update Posted

Pasting in from email received today, May 31, 2009:

New clinical trials are now available at! 563 new featured clinical trials have been added to the database for hundreds of conditions and over 120,000 clinical trials have been made available in our new multi-database search engine.

Please take a moment to review the new clinical trials listed for your area. Also, remember that you may always refer your friends and family members to clinical trials that they may be interested in. To view all new clinical trials in your area please use your zip code to search for studies at

LWA Cofounders

Cofounder Health Update Sunday May 30, 2009

Partial insert of a note written by Karen Kovacik, one of the cofounders of LWA, to other LWA cofounders follows. I wanted to share with our readership:

Last night I put the bottle of narcotics away in the "emergency" drawer. Where those items go that you might need once a year. As I have not had narcotics since last Monday, I feel the withdrawal issues are pretty much behind me. They were not friendly.

Thursday I hiked 4.6 miles, Friday I hiked 4.6 miles, yesterday I hiked 4.6 miles and another 1.2 miles around 7pm with my retriever and played frisbee with him.

Last night I slept the entire night - EIGHT hours ... without waking. I have not done that in over 20 years. The world looks different outside a drug induced haze. Last night, I took 1500mg robaxin plus 20mg diazepam (which is not much for me based on past usage). It was the second night in a row with only one dose of medications at bedtime.

I cannot believe what I have come through AND that I have come this far in what seems such a short period of time. This treatment started around Nov 2008 on a more sporadic basis but really kicked into high gear within the past 6 weeks or so ...... what I can tie to this particular time frame is weekly IV without fail (from Apothecure .... special compound), purer form of natto PN20K in higher doses, increase of D3 to 6000 IU per day and resveratrol.

To say I am overwhelmed with emotion at this progress is an understatement. I have no words to express my profound gratitude to everyone involved and for your support even in the face of "research" saying this can't be done. I do believe I still have arachnoiditis .... I don't know if I will always have it. I also believe we've proven it can be put into a state that is not "inflammatory" and remission and/or improvement is quite possible for many people if we keep knives and chemicals away. Don't EVER believe "there is no cure." Until a person achieves "Supreme Being" status, they are IGNORANT if they say, "there is no hope, no cure." The body/mind connection is also impressive.

As for MY life, I've decided to devote more time to LWA and other non profit efforts, promoting health and "living my life." My personal life is non existent due to non health related circumstances beyond my control. That's OKAY!! Dealing with AA has taught me it does not need to be that way. Yesterday I listed my home in South Fork for sale. Many of you know my lodge is already for sale. I'll be "around" as these events unfold. These actions will free me up to be anywhere at anytime to further this and similar causes. At all times I will remain in contact and "near" you plus those that come within our realm of influence and my friend/treating physician (if your treating physician isn't your "friend," get another physician) to see how far I can take this "cure." I just plan to see a lot of highway, lots of beaches, perhaps some politicians (I'll wash my hands after the politicians!).

I am looking forward to having you on board and to seeing you become as well as you can personally be.

Much love and may God bless our efforts.

Karen Kovacik
Cofounder LWA

Karen Kovacik

Saturday, May 30, 2009

Cofounder No Longer on Pain Meds

From Karen Kovacik, Cofounder:

The last day of narcotic pain medication was Monday, May 25, 2009. Wanted to wait to make certain to correctly reflect my true status on this blog. Had been on pain medication for minimum three years and more so since diagnosis of Arachnoiditis in 2008.

On Thursday I hiked 4.6 miles. On Friday I hiked 4.6 miles. Friday night (last night) I had the best night's sleep I can recall.

I am pain medication free. Still working with muscle spasm medication which is to be expected.

Wanted to share this progress with readers.

God bless you all.

Karen Kovacik
Cofounder LWA

Wednesday, May 27, 2009

Research Page to be Updated at

Greetings all.

We have a bit more in the way of research materials to be shared today. Some time today we hope to update the Research page with documentation on a few issues.


Tuesday, May 26, 2009

Laughter, Normalcy and Joy

Note from Karen Kovacik today:

Today I go for IV vitamin C therapy. Tomorrow or Thursday I will update my Progress page at

I strongly encourage you to laugh as much as possible, to establish as much normalcy as possible in your lives (under the circumstances) and to take in as much joy as you possibly can. The body/mind connection is huge. Think "happy." Think "well." Focus on what you "CAN DO."

A really funny thing happened to me last night .... it did involve a fall, blood and much laughter. Hope to share it on my progress page ... am still giggling.

Love to all ...

Karen Kovacik
Cofounder LWA

Sunday, May 24, 2009

URGENT - Support needed - Leona Anderson, MS

Please do not post "comment" to this but email Leona at

Here is Leona's story:

My name is Leona Anderson. My husband has been diagnosed with Arachnoiditis. This journey started with back surgery for spinal stenosis on November 4, 2008. He came home the same day after surgery. For two weeks he felt like a new man. Sunday night before Thanksgiving, he was feeling really tired and weird. He went and laid down and to adjust himself on the bed, he pushed himself up on the bed with his right foot and felt a pop on his lower right back side with excruciating pain that radiated to the front. He could not sit, stand or lay down without pain. He was rushed to the ER. They got him out of pain and sent him home.We went back to the neurosurgeon who preformed the surgery only to be told he didn't know what was wrong. He sent him to a General Surgeon and a Urologist. Of course, they didn't understand why they were seeing him. He has been back at the ER two more times since then. The latter he was admitted to the hospital because his was in so much pain he passed out and and had a seizure. He had a sever headache and after I called the doctors attention to the headache they decide to do a CT scan. The scan revealed a subarachnoid hemorrhage.The doctors then diagnosed him with Arachnoiditis. The doctors we are dealing with are not that familiar with this disease. They do not know what caused this to happen. Before they found this hemorrhage they were going to treat him for Chronic pain. We are just getting the run around. We are now home after a month stay in the hospital and inpatient Rehab. His medication consist of Nimidopine which he finished on May 16, 2009, Depakote, valium, neurontin, vitamin C and perocet when needed for severe pain. He is going to Physical Therapy for three days a week for an hour. He can't laugh, cough, sneeze or bend with out lightning pain shooting through him. We go back to the neurosurgeon on May 28. Could you give me some questions I need to ask? My husband is not aware of the severity of his disease. He is still recuperating from his stay in the hospital. If you have any advise you could give would be greatly appreciated.I am thankful I have found your website. I was feeling all alone in dealing with this. He has some good days but says he is always hurting. His pain is about a 5 every day. He is not working right now. He is on short term disability. We are hoping he will be able to return to work. I like the idea of maybe he will be able to treat his pain with out narcotic drugs. If you are able to direct me in the direction I need to be able to accomplish this for him it well be greatly appreciated. Thank you for taking the time to read my email. I look forward to hearing from you. Leona Anderson

The Vitamin C Connection - Not to be missed!

Vitamin C: Past, Present, Future Applications by Thomas Levy, MD. - The American College for Advancement in Medicine - This is the AMAC site where they offer video presentations on demand. For this presentation, scroll down to the presentation on Vitamin C by Levy.

More information will be posted soon on other courses of alternative treatments.


Alternative & Integrative Practioners - Where to find them!

Finally we have more information available. Many of you have asked how to find a doctor familiar with alternative treatment. It is now published on our Provider Page and here is a paste in of the link. There are many throughout the United States and other locations.

The American College for Advancement in Medicine (ACAM) - Not-for-profit association dedicated to educating physicians and other health care professionals on latest findings and emerging procedures in complementary, alternative and integrative (CAIM) medicine. ACAM is the voice of integrative medicine; our goals are to improve physician skills, knowledge and diagnostic procedures as they relate to complementary and alternative medicine; to support integrative medicine research; and to develop awareness of alternative methods of medical treatment. Celebrating more than a quarter century of service, ACAM represents more than 1,000 physicians in 30 countries. ACAM is the largest and oldest organization of its kind in the world dedicated exclusively to serving the needs of the integrative medicine industry.


Wednesday, May 20, 2009

Juliette Curtis has questions. Can any of you help? If so her email is below! Thank you.

Juliette Curtis is a new member. We are pasting in her request for information/support below.

Anything any of you can do to share or respond to Juliette would be appreciated!

Her email is

Here is her request:

"I am so glad to be part of this blog. Can anyone share with me there experiences with topamax, and maybe even if they have taken along with darvocet and dilaudid.

Also, is there anyone here from central oregon that has a good doctor that knows about arachnoiditis? I like my doctor. but he just seem so uninformed, at times I feel like I know more than he does and I do not know very much.


Please respond directly to Juliette if you can. Our "comments" are not as visible as the blog posts and I think it would be helpful if you could start communicating with "each other."

Thank you for any help anyone can offer Juliette.

LWA Cofounders

Two New Members Added May 20, 2009

We have added two new members to the Members' Page today.

Please go to our web site at and click on the Member Page. Look for:

Donna Mayfield -Arachnoiditis, Fibromyalgia - Seeks support and informatioin. Please email her!

Juliette Curtis - Arachnoiditis - Mom with an eight year old son. Perhaps some of you with children at home might make contact with Juliette?


LWA Cofounders

Tuesday, May 19, 2009

Welcome to new member - this member has requested assistance!

We have a new member today: Theresa Bugnatto

Her email is

She has visited our Facebook Page and listed her story there under "Discussions." To see her story, please go to and in the search window enter "Life With Arachnoiditis"

Once on our page, click on the Discussions Tab.

Welcome, Theresa.


Sunday, May 17, 2009

The fibrin - scar tissue connection and what does N-Kinnase have to do with anything?

Article from on Fibrolynosis and Scar Tissue:

Influence of fibrinolytic factors on scar formation after lumbar discectomy. A magnetic resonance imaging follow-up study with clinical correlation performed 7 years after surgery.

Dullerud R, Graver V, Haakonsen M, Haaland AK, Loeb M, Magnaes B.

Department of Neuroradiology, Ullevaal University Hospital, Oslo, Norway.

STUDY DESIGN: Prospective cohort study. OBJECTIVES: To assess the amount of scar tissue by viewing magnetic resonance images, and to evaluate the correlation between the amount of scar tissue and clinical outcome, surgical technique, and fibrinolytic factors. SUMMARY OF BACKGROUND DATA: The influence of fibrinolytic factors on magnetic resonance images has not been investigated previously. The relation between clinical outcome and findings on magnetic resonance imaging remains uncertain. METHODS: Magnetic resonance imaging at 0.5 Tesla was performed to produce sagittal and axial spin-echo T1-weighted images before and after contrast enhancement on 78 patients 7 years after traditional lumbar discectomy with partial or full laminectomy. Before surgery all patients had been tested for fibrinolytic factors. RESULTS: The overall clinical success rate of the surgery was 73%. No evidence of scar formation was seen in 19 patients, a small amount was seen in 36 patients, a moderate amount in 17 patients, and a large amount was observed in 6 patients. Ten patients who had undergone surgery at two disc levels and 18 who had been treated with full laminectomy exhibited more scar tissue than those patients who had undergone surgery on a single level (P = 0.033) and those who had undergone a partial laminectomy, respectively (P = 0.017). The amount of scar formation also was associated with a poor outcome (P = 0.017) and with low preoperative values of tissue plasminogen activator antigen (P = 0.003) and tissue plasminogen activity (P = 0.048) in samples collected after venous occlusion. The intensity of contrast enhancement, however, was not influenced by these or any other parameters. CONCLUSION: The amount of scar formation after lumbar discectomy seems to be related to the clinical outcome, the size of the surgical exposure, and some fibrinolytic factors.

************For more articles on fibrinolysis see: and in the search box enter: "fibrinolysis and scar tissue"

Research thus far indicates N-Kinnase to be of value in regards to fibrinolysis. More research to follow. Watch our web site at for more research we now have in hand to post to share with readers.

Thursday, May 14, 2009

Welcome to New Members

New members added in May: Kimberly Woody (mother with arachnoiditis), Rebecca Lockley (Adhesive Arachnoiditis), James Cherozzi (Arachnoiditis), Dru (family member with AA), Bonnie McCrane (AA), John Davidson (Arachnoiditis).

Please check the listings for these new members on our web site. Some are asking for help! We are working on a way to let each other know what we need so we can help each other more consistently. Please bear with us as we make these transitions.

LWA Cofounders

Wednesday, May 13, 2009

Research to be Posted

We are working now to post relevant research which is now at LWA.

For those of you wondering why a "medical food" could work for arachnoiditis, the answers are on the way for your health care providers!


Cofounder Bio Updated May 12, 2009

See bio for Karen Kovacik and click through to the update page.

Tuesday, May 12, 2009

Please see Bio Karen Kovacik for May 09 Updates

Karen's bio will be updated shortly outlining updates in her treatment. This may be found on our web site at at the cofounder area.


Saturday, May 9, 2009

Good Wishes going out to Sean

One of our members, Sean, has had a rough few days. We are thinking of you!

LWA Cofounders

Finding us on Facebook - It is FREE

We now have our Facebook Page up.

Create a facebook account. It is free. Go to and once there you will need your email address and make up your password.

Once your account is created, please put in the Facebook Search window - Life With Arachnoiditis and this should take you to our page. You can become a Fan.

It is our understanding we have the account set so you may post. There are discussion threads that we have outlined. One includes "Support." We wanted you to be able to reach out for support and anyone that wishes to respond may do so.

Please go to the new Facebook page and let us know if you have any problems with it. We need to email all but have not yet had the opportunity.

See you soon!

LWA Cofounders

Friday, May 8, 2009

Life With Arachnoiditis launching its Facebook page

We have come up with a solution for being able to interact with each other!

You will be receiving invitation to our facebook page. Facebook is free. It does require an email address and a password. Believe it also asks for your birthday (only people 18 and older may post to our facebook).

Look for your invitation!

LWA Cofounders

Wednesday, May 6, 2009

Cofounder, Jon, is down, please email support

Cofounder, Jon, is down and just in from the hospital. He is having difficulty walking, having extreme pain episode, and the pain is at an unmanageable level.

Please keep his wife, Jooles, in your prayers. If you wish to email your support for him, please do so at

If you pray, please do so.

We are with you, Jon and Jooles.

Four New Members Posted Today

Please see our Member page for information on four new members added today: Kimberly Woody (mother with arachnoiditis), Rebecca Lockley (AA), James Cherozzi (arachnoiditis), Dru (family member with AA).

**Please check the listings for these new members. Some are asking for help!

A new provider has been suggested in Mississippi and it has been posted.

We are working on a way to keep all in the loop as to new members, news and needs. Please bear with us as we make these transitions.

LWA Cofounders

Any problems refilling control substance 2 pain medication?

Please give us feedback.

Is anyone having problems refilling pain medications? If so, please let us know.

Thank you.

LWA Cofounders

Electronic Orange Book - Products Approved FDA

This link is valuable in assessing medication that may be prescribed to you:

This is a paste in from the site:

The products in this list have been approved under section 505 of the Federal Food, Drug, and Cosmetic Act.
Drug questions email:
U.S. Department of Health and Human ServicesFood and Drug AdministrationCenter for Drug Evaluation and ResearchOffice of Pharmaceutical ScienceOffice of Generic Drugs

Appears wise to question what is being put in our medications? Even if it is approved by the FDA?

You are your best advocate. Do the research.

Karen Kovacik, Cofounder

Monday, May 4, 2009

About the doctor treating Karen Kovacik, Cofounder

So many of you want to know a little about my health care provider's background.

This web page will give you just a little information on his background. See

Ralph Holsworth also administers the IV vitamin C/magnesium therapy to me weekly.

Hopefully this will allow you to learn a little more. Also research nattokinnase on google for more information on similar enzymes that work to remove plaque and other debris from our bodies.

Karen Kovacik, Cofounder

Cofounder, Jon McHann, has been quite ill

Just a note to those corresponding with Jon. I spoke to Jon at length this afternoon, May 4, 2009, and he has been quite ill. He is just now almost able to respond to email.

Say a few prayers for him. Jon may be starting some of the therapy Karen is undergoing as soon as he is stable.

Keep the faith and don't give in to this illness.

STAND UP AND FIGHT - reach out your hand, we will help you fight!

Love to all,

Karen Kovacik, Cofounder

Link to Cofounder Treatment

For many of you asking about my treatment and progress, here is the link to my progress:

We will post to this information as things unfold - good and bad. I am expecting only good!!


Cofounder Treatment & Personal Log

Greetings to all.

There have been MANY emails asking questions about the treatment plan of one of our cofounders.

A decision has been made by Karen to release "partial" information about her current treatment and personal progress. A link will be posted from Karen's bio that will outline Karen's progress. This is not intended to be medical advice but merely a log of one person's journey. This is NOT a recommendation to anyone! You MUST seek care through a medical professional.

This information may be shared with your physician for his or her information and/or evaluation. Any contact for further information must be made by your physician to Karen's physician.

Karen's physician has requested her complete medical records to perform a "formal case study." It is Karen's hope to be able to make a difference that is real. This will not be quick. A formal case study takes time. In the meantime, Karen will share her journey through her bio.

God speed .....

Karen Kovacik
South Fork, Colorado