Clif Riethmiller made a comment about your note "Momentous Step in Finding a Cure for Arachnoiditis, Failed Back Surgery Syndrome & More": I have visited the website and I have some small understanding of arachnoiditis. I may not have much but I will always have an ear to listen, a hand to help and a shoulder to lean on. And, you absolutely amaze me.
Clif Riethmiller made a comment about your note "Momentous Step in Finding a Cure for Arachnoiditis, Failed Back Surgery Syndrome & More": Thank you!
Jimmy Winokur made a comment about your note "Momentous Step in Finding a Cure for Arachnoiditis, Failed Back Surgery Syndrome & More": Karen, This website and your other work constitute an ambitious project to address a painful, seemingly little-known lower spine ailment, which I know has caused you great physical and emotional pain. The pictures -- of you and especially the x-rays -- vividly shout: "caution!" It is great that you and your co-founders are taking the issues beyond just yourselves, to try and help other sufferers worldwide. Godspeed! Jimmy
Eve Tysinger Gossman made a comment about your note "Momentous Step in Finding a Cure for Arachnoiditis, Failed Back Surgery Syndrome & More": Karen, I know I told you that I'm convinced that my mother suffered from this. After seeing what she went through, I am a huge supporter of anything that might help. Keep up the good work. You are amazing!
JoAnn Fetzer Sedoris made a comment about your note "Momentous Step in Finding a Cure for Arachnoiditis, Failed Back Surgery Syndrome & More": prayers... positive thoughts ... a place in my heart!
Liz Wald Spears Reed made a comment about your note "Momentous Step in Finding a Cure for Arachnoiditis, Failed Back Surgery Syndrome & More": Having dealt with so many people in my life with chronic pain issues due to back problems and auto immune problems - its been wonderful watching you get to feeling better - I'm proud of you and the work your doing ....
Dixie Johnson made a comment about your note "Momentous Step in Finding a Cure for Arachnoiditis, Failed Back Surgery Syndrome & More": I've studied all of your blogs and I totally support you. You are so much stronger Than I would be. You have my LOVE. SUPPORT, and any help I can give you.
Karen Kovacik says, "Thank you all for your support. Our members, their families, health care practitioners and all that are touched by this issue need your support."
Wednesday, April 29, 2009
Tuesday, April 28, 2009
Supplier for IV Sodium Ascorbate (Vitamin C)
Karen Kovacik left a message today for Dick at ApotheCure, Inc regarding supplying patients and their health care practitioners with "preservative free" ascorbic acid. Thus far, no return call has been received.
Therefore, as promised this morning, information on the supplier follows:
ApotheCure, Inc.
4001 McEwen Road
Suite 100
Dallas, Texas 75244
www.apothecure.com
Telephone - 1-800-969-6601
Telephone - 1-972-960-6601
Fax - 1-972-960-6921
Product ordered from ApotheCure, Inc. through Dr. Ralph Holsworth follows:
Sodium Ascorbate 50% 500 ML - PRESERVATIVE FREE ONLY (do not accept anything with preservatives as you may exhibit allergic reactions)
Product ordered is reportedly enough for 10 treatments at 25 grams per treatment. It is combined with magnesium in a saline solution (have no definition on the magnesium portion of product yet to share yet).
ALL product used must be preservative free. Cofounder receives one 25 gram IV per week. Cost for this product was $57.15 with no shipping charges per the invoice. Refer the supplier to invoice No. 298497.
It would be a fair assumption you must have your health care provider contact this organization in order to obtain the product. Your provider must also administer the product under close supervision.
Thus far we have not been unable to ascertain if we can negotiate a price break for the organization, whether an Rx is required, if insurance covers, etc.
As soon as we have more information we will post it for members and health care providers.
We will contact ApotheCure, Inc. again this week if we do not hear back from them first.
PLEASE HAVE YOUR HEALTH CARE PROVIDER MAKE CONTACT ON YOUR BEHALF!
Good luck with this information!
Karen Kovacik, Cofounder LWA
Therefore, as promised this morning, information on the supplier follows:
ApotheCure, Inc.
4001 McEwen Road
Suite 100
Dallas, Texas 75244
www.apothecure.com
Telephone - 1-800-969-6601
Telephone - 1-972-960-6601
Fax - 1-972-960-6921
Product ordered from ApotheCure, Inc. through Dr. Ralph Holsworth follows:
Sodium Ascorbate 50% 500 ML - PRESERVATIVE FREE ONLY (do not accept anything with preservatives as you may exhibit allergic reactions)
Product ordered is reportedly enough for 10 treatments at 25 grams per treatment. It is combined with magnesium in a saline solution (have no definition on the magnesium portion of product yet to share yet).
ALL product used must be preservative free. Cofounder receives one 25 gram IV per week. Cost for this product was $57.15 with no shipping charges per the invoice. Refer the supplier to invoice No. 298497.
It would be a fair assumption you must have your health care provider contact this organization in order to obtain the product. Your provider must also administer the product under close supervision.
Thus far we have not been unable to ascertain if we can negotiate a price break for the organization, whether an Rx is required, if insurance covers, etc.
As soon as we have more information we will post it for members and health care providers.
We will contact ApotheCure, Inc. again this week if we do not hear back from them first.
PLEASE HAVE YOUR HEALTH CARE PROVIDER MAKE CONTACT ON YOUR BEHALF!
Good luck with this information!
Karen Kovacik, Cofounder LWA
Information on Obtaining Vitamin C IV Direct
Information will be made available later today on this blog regarding the IV treatment currently being administered to cofounder, Karen.
The post will provide information for you and your provider as to how to order "preservative free" product. Unfortunately, most of the ascorbic acid IV product does have preservatives in it. Karen did have an allergic reaction to the product containing preservatives.
We recommend the "preservative free" product should you or your provider wish to give this product a try.
As soon as we hear from the supplier, we will post another note to the blog.
Karen Kovacik, Cofounder
The post will provide information for you and your provider as to how to order "preservative free" product. Unfortunately, most of the ascorbic acid IV product does have preservatives in it. Karen did have an allergic reaction to the product containing preservatives.
We recommend the "preservative free" product should you or your provider wish to give this product a try.
As soon as we hear from the supplier, we will post another note to the blog.
Karen Kovacik, Cofounder
Friday, April 24, 2009
Send to your elected officials - National Pain Act
Please go to this site and write your elected government officials. Your health depends on it!
https://secure2.convio.net/apf/site/Advocacy?pagename=homepage&page=UserAction&id=279&JServSessionIdr010=iqbdl70gd5.app43a
Karen Kovacik, Cofounder
https://secure2.convio.net/apf/site/Advocacy?pagename=homepage&page=UserAction&id=279&JServSessionIdr010=iqbdl70gd5.app43a
Karen Kovacik, Cofounder
Cofounder, Karen - Back on the Job as of April 27
Greetings to all!
I am in transit home. Monday will find me in high gear back on task.
Feel free to contact any of us if we can help you.
Love to all.
Karen Kovacik, Cofounder
Life With Arachnoiditis
I am in transit home. Monday will find me in high gear back on task.
Feel free to contact any of us if we can help you.
Love to all.
Karen Kovacik, Cofounder
Life With Arachnoiditis
Monday, April 20, 2009
FDA Overturns Decision Regarding Unapproved Opioids
This was picked up from the American Pain Foundation:
FDA Briefing on Unapproved Opioids was held on April 9, 2009.
An emergency stakeholder briefing was convened via conference call by the FDA to address concerns that have been raised by the pain and palliative care communities regarding warnings to nine companies to stop manufacturing and distributing 14 opioid analgesics within 60 days. APF participated in this briefing.
Douglas Throckmorton, M.D., Deputy Director, Center for Drug Evaluation and Research stated that the FDA understands that patients dealing with terminal illness have unique needs that should have been taken into consideration.
The FDA reported that they are taking immediate corrective action regarding the availability of the 20mg/ml morphine sulfate solution. They regretted that they failed to include representatives from hospice and palliative care organizations in deliberations over this particular issue and will improve their consultation process with key stakeholders in the future.
The FDA commented that they were not aware of the extent of disruption in patient care because of their ruling or that a critical shortage of some of these medications already exists. We would like to acknowledge them for their swift action in this case as they became aware of the impact this disruption was having on the community. In order to help remedy this; they would like to hear from providers if there are critical shortages in medications to help manage patients optimally.
Action: The FDA has asked to be notified of drug shortages in your area as they arise. Contact FDA by emailing this information to drugshortages@fda.hhs.gov. All correspondence should include your professional information, name of the drug, your location, name of wholesaler (if available) and identify yourself as an APF member.
To stay informed of drug shortages, visit the FDA website at: http://www.fda.gov/cder/drug/shortages/
Our voices can make a difference.
Note from Karen Kovacik, CoFounder:
Membership in American Pain Foundation is FREE! To keep up with these issues, go to www.painfoundation.org
FDA Briefing on Unapproved Opioids was held on April 9, 2009.
An emergency stakeholder briefing was convened via conference call by the FDA to address concerns that have been raised by the pain and palliative care communities regarding warnings to nine companies to stop manufacturing and distributing 14 opioid analgesics within 60 days. APF participated in this briefing.
Douglas Throckmorton, M.D., Deputy Director, Center for Drug Evaluation and Research stated that the FDA understands that patients dealing with terminal illness have unique needs that should have been taken into consideration.
The FDA reported that they are taking immediate corrective action regarding the availability of the 20mg/ml morphine sulfate solution. They regretted that they failed to include representatives from hospice and palliative care organizations in deliberations over this particular issue and will improve their consultation process with key stakeholders in the future.
The FDA commented that they were not aware of the extent of disruption in patient care because of their ruling or that a critical shortage of some of these medications already exists. We would like to acknowledge them for their swift action in this case as they became aware of the impact this disruption was having on the community. In order to help remedy this; they would like to hear from providers if there are critical shortages in medications to help manage patients optimally.
Action: The FDA has asked to be notified of drug shortages in your area as they arise. Contact FDA by emailing this information to drugshortages@fda.hhs.gov. All correspondence should include your professional information, name of the drug, your location, name of wholesaler (if available) and identify yourself as an APF member.
To stay informed of drug shortages, visit the FDA website at: http://www.fda.gov/cder/drug/shortages/
Our voices can make a difference.
Note from Karen Kovacik, CoFounder:
Membership in American Pain Foundation is FREE! To keep up with these issues, go to www.painfoundation.org
Conference in Ottawa, Ontario - Canadian Organisation for Rare Disorders
From Louise Carbonneau Vermeiren:
Please see: http://www.arachnoiditiscanada.com/.
I believe that we (arachnoiditis sufferers) must link with each others so we can make an impact on the medical profession to stop invasive procedures. We are scattered all across the world, incapable of moving forward or being acknowledged and heard.
****Louise will be a guest speaker at the conference in Ottawa, Ontario at the Canadian Organisation for Rare Disorders in May 1-2. The web address is www.cord.ca. You can peruse the agenda. Louise is scheduled to speak May 1 at 2:30pm with only 15 minutes, so time is of the essence. She will be introducing arachnoiditis to researchers. doctors, pharmaceutical companies.
All are invited to attend as well. It is open to the public. The more arachnoiditis patients, the more impact we will make. There is a movement on the internet to work towards awareness.
Louise writes: "I hope you will be willing to accept my membership and join our efforts to make a difference. " To Louise, I say, WELCOME!!!
From Karen Kovacik:
Dear friends, there is hope. We are going to whip this thing! Hang in there. STAND UP & FIGHT, fight as hard as you know how ...... buy that time you need. If you need help to stand up and fight, just reach out your hand to one of us. We love you.
Karen Kovacik, Co-Founder
Life With Arachnoiditis
Please see: http://www.arachnoiditiscanada.com/.
I believe that we (arachnoiditis sufferers) must link with each others so we can make an impact on the medical profession to stop invasive procedures. We are scattered all across the world, incapable of moving forward or being acknowledged and heard.
****Louise will be a guest speaker at the conference in Ottawa, Ontario at the Canadian Organisation for Rare Disorders in May 1-2. The web address is www.cord.ca. You can peruse the agenda. Louise is scheduled to speak May 1 at 2:30pm with only 15 minutes, so time is of the essence. She will be introducing arachnoiditis to researchers. doctors, pharmaceutical companies.
All are invited to attend as well. It is open to the public. The more arachnoiditis patients, the more impact we will make. There is a movement on the internet to work towards awareness.
Louise writes: "I hope you will be willing to accept my membership and join our efforts to make a difference. " To Louise, I say, WELCOME!!!
From Karen Kovacik:
Dear friends, there is hope. We are going to whip this thing! Hang in there. STAND UP & FIGHT, fight as hard as you know how ...... buy that time you need. If you need help to stand up and fight, just reach out your hand to one of us. We love you.
Karen Kovacik, Co-Founder
Life With Arachnoiditis
Sunday, April 19, 2009
Input from New Member, Richard Cassidy, Oklahoma
Richard has some input:
I truly believe that you can't talk about this "so called disease" without interjecting some politics into the conversation. They go hand in hand. It is politics and money that keeps this gravy train rolling for big Pharma. And when one talks about this issue, you have got to follow the money trail.
Which brings Lobbyists into the conversation. As fragile as our Democracy is now, it is still a Democracy. And certain things have got to be pointed out in order to get something done. First and foremost, my main goal is to try and stop this madness of ruining peoples lives.
One thing, any person wants is to be taken seriously. I have been going through this pain for too long, without doing something about it. I have a brother who works for MERCK and he also has gone through 2 back surgeries, but without Dep-Medrol, and he's doing good.
From cofounder, Karen Kovacik: I think we all know it is big business and depo medrol poses a huge potential problem. Our goal is to get our ducks in a row and hopefully get some congressional hearings. This is down the road and patience will be required in order to present a cohesive and coherent front that will take this disease to the public.
Thank you for your input, Richard.
I truly believe that you can't talk about this "so called disease" without interjecting some politics into the conversation. They go hand in hand. It is politics and money that keeps this gravy train rolling for big Pharma. And when one talks about this issue, you have got to follow the money trail.
Which brings Lobbyists into the conversation. As fragile as our Democracy is now, it is still a Democracy. And certain things have got to be pointed out in order to get something done. First and foremost, my main goal is to try and stop this madness of ruining peoples lives.
One thing, any person wants is to be taken seriously. I have been going through this pain for too long, without doing something about it. I have a brother who works for MERCK and he also has gone through 2 back surgeries, but without Dep-Medrol, and he's doing good.
From cofounder, Karen Kovacik: I think we all know it is big business and depo medrol poses a huge potential problem. Our goal is to get our ducks in a row and hopefully get some congressional hearings. This is down the road and patience will be required in order to present a cohesive and coherent front that will take this disease to the public.
Thank you for your input, Richard.
Saturday, April 18, 2009
For Richard Cassidy
Richard,
I've tried to email you twice and your email is bouncing. Please email kkovacik12@netzero.com and let me know if I may add your first email in edited form to our blog?
Thank you,
Karen Kovacik
Co-Founder
I've tried to email you twice and your email is bouncing. Please email kkovacik12@netzero.com and let me know if I may add your first email in edited form to our blog?
Thank you,
Karen Kovacik
Co-Founder
Monday, April 13, 2009
Please welcome Marie
Please welcome another new member, Marie Rabbette.
Marie is from the United Kingdom and her email address is - marierabbette@yahoo.couk
Marie writes:
"I was diagnosed with AA in March 2008. I'm still in shock but would appreciate any information anyone may have on case law connected taking legal action against my doctor. Arachnoid cyst were identified in 1996 by my pain management consultant, who then chose not to tell me, I only found out following a referral to a neurologist last year. any help/guidance would be appreciated Regards, Marie"
If anyone has any input for Marie, please feel free to write to her or post a comment.
Thank you!
Marie is from the United Kingdom and her email address is - marierabbette@yahoo.couk
Marie writes:
"I was diagnosed with AA in March 2008. I'm still in shock but would appreciate any information anyone may have on case law connected taking legal action against my doctor. Arachnoid cyst were identified in 1996 by my pain management consultant, who then chose not to tell me, I only found out following a referral to a neurologist last year. any help/guidance would be appreciated Regards, Marie"
If anyone has any input for Marie, please feel free to write to her or post a comment.
Thank you!
Wednesday, April 8, 2009
Karen in Florida, Jon & Cindy Available
Greetings from Sunny Florida. Arrived at 11:30 pm last night, April 7.
I am thrilled to report that I navigated Denver International Airport with rolling luggage and heavy personal item (experimental stuff galore in it) with NO assistance!
Stood in the security line, unloaded, loaded my items, just like an "able bodied" person! Then made it to Atlanta, WALKED to the T concourse which was a hike again with NO assistance! Then to West Palm Beach and again walked with my carry on to baggage claim ... NO assistance, no traveling companion.
Folks, if that isn't indicative of improvement, I don't know what else you need? WOW
Jon and Cindy are on task while I play down here. You are all in my heart and I am "going for it" for each and every one of you.
Love & Blessings to ALL!
Karen Kovacik, Co-FounderLife with Arachnoiditis
I am thrilled to report that I navigated Denver International Airport with rolling luggage and heavy personal item (experimental stuff galore in it) with NO assistance!
Stood in the security line, unloaded, loaded my items, just like an "able bodied" person! Then made it to Atlanta, WALKED to the T concourse which was a hike again with NO assistance! Then to West Palm Beach and again walked with my carry on to baggage claim ... NO assistance, no traveling companion.
Folks, if that isn't indicative of improvement, I don't know what else you need? WOW
Jon and Cindy are on task while I play down here. You are all in my heart and I am "going for it" for each and every one of you.
Love & Blessings to ALL!
Karen Kovacik, Co-FounderLife with Arachnoiditis
Saturday, April 4, 2009
NO ... not selling N-Kinnase NOR making money from it
It would be nice if people would post their names when asking a question such as this one: Are we making money from N-Kinnase or selling it?? This was a post I felt needed to be addressed to keep this organization pure from its inception and to make clear this organization will not be run as others. Our sole mission is education, research, remission, support and that elusive cure.
At no time have I made a profit from N-Kinnase. In fact, it has been provided to me FREE OF CHARGE. Additionally, I have provided it to others that cannot afford it FREE.
Hopefully that answers this question without any further conversation required.
This organization is about finding a cure, not making money.
Karen Kovacik, Co-Founder
At no time have I made a profit from N-Kinnase. In fact, it has been provided to me FREE OF CHARGE. Additionally, I have provided it to others that cannot afford it FREE.
Hopefully that answers this question without any further conversation required.
This organization is about finding a cure, not making money.
Karen Kovacik, Co-Founder
Thursday, April 2, 2009
BIG NEWS - Nattokinase May Show Promise for Arachnoiditis!
This is the most exciting possibility yet! While we cannot "prove" N-Kinnase will work for everyone, it "seems" to be working for me. Having gone from being unable to balance in June 2008 to walking 6.7 miles and an active lifestyle today is truly remarkable.
Last Monday, I printed out research for Dr. Ralph Holsworth, a profibrinolytic enzyme researcher (hope I got that right). Just a few minutes ago, I came from Dr. Holsworth's office and he had done some research since Monday. He was EXCITED. His preliminary research "suggests" the profibrinolytics may show promise for arachnoiditis!! Dr. Holsworth has asked for my complete medical history including x-rays, MRI's, CT scans, etc. to put together formal documentation. If we can get a formally documented study, we are going to go places!
THIS IS EXCITING. If you want to give this a try, please go to our web site at www.lifewitharachnoiditis.com and look under the Provider section. We will be listing the research company involved with this product. I've been on it since November 2008 and have never felt better. Each week is better than the one before. It is not an instant fix. But if you could take a slice from June to Dec and then now, WOW. PLEASE TALK TO YOUR HEALTH CARE PROVIDER FIRST.
We are in preliminary stages of discussing how we can get health care providers involved in the actual research so others may take advantage of this process.
I am so encouraged! In my heart, I knew I was a different person from last summer, but I am now so excited if this can be helpful to others. Please let us hear from you!
Karen Kovacik
Co-Founder
Last Monday, I printed out research for Dr. Ralph Holsworth, a profibrinolytic enzyme researcher (hope I got that right). Just a few minutes ago, I came from Dr. Holsworth's office and he had done some research since Monday. He was EXCITED. His preliminary research "suggests" the profibrinolytics may show promise for arachnoiditis!! Dr. Holsworth has asked for my complete medical history including x-rays, MRI's, CT scans, etc. to put together formal documentation. If we can get a formally documented study, we are going to go places!
THIS IS EXCITING. If you want to give this a try, please go to our web site at www.lifewitharachnoiditis.com and look under the Provider section. We will be listing the research company involved with this product. I've been on it since November 2008 and have never felt better. Each week is better than the one before. It is not an instant fix. But if you could take a slice from June to Dec and then now, WOW. PLEASE TALK TO YOUR HEALTH CARE PROVIDER FIRST.
We are in preliminary stages of discussing how we can get health care providers involved in the actual research so others may take advantage of this process.
I am so encouraged! In my heart, I knew I was a different person from last summer, but I am now so excited if this can be helpful to others. Please let us hear from you!
Karen Kovacik
Co-Founder
New Members Posted Today
Please welcome new members posted to our web site Members page today, April 2, 2009: members added on April 2: Deb Green, Sarah MacLeod, Alan Weinraub, Anna Lyman.
We encourage you to have your friends, health care providers, family and others to join our site. As we organize for the efforts that lie ahead, we will need all the support we can find to educate the medical community, congress, and the public in general.
You may visit our web site at www.lifewitharachnoiditis.com and click on Members. People that are open to communication will have their emails highlighted with their information. There are others that just wish to be counted as members but have not decided to participate in email at this time.
Please note, many of the members that suffer from Arachnoiditis or similar disorders WELCOME any and all email of a supportive nature.
Jon McHann, one of our co-founders, is home from the hospital and would welcome emails of support.
Have a great day!
Karen Kovacik, Co-Founder
We encourage you to have your friends, health care providers, family and others to join our site. As we organize for the efforts that lie ahead, we will need all the support we can find to educate the medical community, congress, and the public in general.
You may visit our web site at www.lifewitharachnoiditis.com and click on Members. People that are open to communication will have their emails highlighted with their information. There are others that just wish to be counted as members but have not decided to participate in email at this time.
Please note, many of the members that suffer from Arachnoiditis or similar disorders WELCOME any and all email of a supportive nature.
Jon McHann, one of our co-founders, is home from the hospital and would welcome emails of support.
Have a great day!
Karen Kovacik, Co-Founder
Wednesday, April 1, 2009
Co-Founder Needs Support
One of our co-founders, Jon, just been released from the hospital. Jon was in 24 hrs.
We are now aware there are arachnoid membranes on the exterior of the optic nerves. There is strong evidence to support that once underway this disease has a large auto immune component.
Jon is home, but it has been very tough for him and his wife, Jooles. If you would like to send an email of support, please see the members page or email Jon at jon.mchann@gmail.com with your support.
God bless us all.
Karen, Co-Founder
We are now aware there are arachnoid membranes on the exterior of the optic nerves. There is strong evidence to support that once underway this disease has a large auto immune component.
Jon is home, but it has been very tough for him and his wife, Jooles. If you would like to send an email of support, please see the members page or email Jon at jon.mchann@gmail.com with your support.
God bless us all.
Karen, Co-Founder
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