Pasting in from email received today, May 31, 2009:
New clinical trials are now available at ClinicalConnection.com! 563 new featured clinical trials have been added to the ClinicalConnection.com 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 http://www.clinicalconnection.com/SearchStudies.aspx.
LWA Cofounders
Sunday, May 31, 2009
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
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
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 www.lifewitharachnoiditis.com
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.
LWA
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.
LWA
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 www.lifewitharachnoiditis.com
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
Today I go for IV vitamin C therapy. Tomorrow or Thursday I will update my Progress page at www.lifewitharachnoiditis.com
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 admissions123@gmail.com
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 admissions123@gmail.com
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 admissions123@gmail.com
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.
LWA
More information will be posted soon on other courses of alternative treatments.
LWA
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