Comments on: Why I Wrote The Autoimmune Epidemic http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/ Donna Jackson Nakazawa, author and speaker Thu, 25 Jun 2009 13:07:05 +0000 http://wordpress.com/ hourly 1 By: Frank http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-127 Frank Tue, 03 Mar 2009 00:08:25 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-127 I was diagnosed with CIDP, I'm curious about LDN therapy do you know anyone I can call and talk to about it. Thanks. I was diagnosed with CIDP, I’m curious about LDN therapy do you know anyone I can call and talk to about it. Thanks.

]]> By: Jocelyn Turner http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-114 Jocelyn Turner Sat, 03 Jan 2009 15:12:31 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-114 Hi! I am actually a patient of Dr. Kerr's. He is absolutely FANTASTIC!!! In April of 2006 I was diagnosed with Transverse Myelitis (TM). I lost 90-95% feeling from my knees down in both legs. After about 1.5 years, I was extremely fortunate to have what could be considered a full recovery. This past September (2008), however, my symptoms came back, this time attacking my arms and hands. After a heavy dose of IV steroids, I got much of my feeling back, only for the symptoms to return just two months later. That brings us to now. I'm still in the middle of my course of oral steroids. I am improving, but I'm not feeling great. Oh, I forgot to mention that after my September episode, I was diagnosed with MS. TM and MS are very closely related. I found out about your book while perusing through the different Hopkins webpages. I ordered it immediately and have been reading it piece by piece. I think it's phenomenal! I've actually referenced your book on my webpage. I am currently working on a fundraiser to help send money to Dr. Kerr and his crew for TM and MS research. Just speaking to him makes you want to help out! Did you get that feeling? Anyway, I just wanted to thank you for taking the time to write this book! It's amazing the things you learn not only about yourself, but about the world and others when you're giving such life changing news. I wish you (and everyone else afflicted by an autoimmune disease) nothing but the best! Stay positive! *Jocelyn* -from NJ Hi!
I am actually a patient of Dr. Kerr’s. He is absolutely FANTASTIC!!! In April of 2006 I was diagnosed with Transverse Myelitis (TM). I lost 90-95% feeling from my knees down in both legs. After about 1.5 years, I was extremely fortunate to have what could be considered a full recovery. This past September (2008), however, my symptoms came back, this time attacking my arms and hands. After a heavy dose of IV steroids, I got much of my feeling back, only for the symptoms to return just two months later. That brings us to now. I’m still in the middle of my course of oral steroids. I am improving, but I’m not feeling great. Oh, I forgot to mention that after my September episode, I was diagnosed with MS. TM and MS are very closely related. I found out about your book while perusing through the different Hopkins webpages. I ordered it immediately and have been reading it piece by piece. I think it’s phenomenal! I’ve actually referenced your book on my webpage. I am currently working on a fundraiser to help send money to Dr. Kerr and his crew for TM and MS research. Just speaking to him makes you want to help out! Did you get that feeling?

Anyway, I just wanted to thank you for taking the time to write this book! It’s amazing the things you learn not only about yourself, but about the world and others when you’re giving such life changing news.

I wish you (and everyone else afflicted by an autoimmune disease) nothing but the best! Stay positive!

*Jocelyn*
-from NJ

]]> By: Amy Williams http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-111 Amy Williams Fri, 06 Jun 2008 05:14:41 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-111 You are AWESOME! Thank you for writing this book. I just read the part about Diabetes...a book like yours has been needed, as you know. Thank you again for your courage to get what neds to be said in front of thousands. Now the consciousness will be raised! :-) ~Amy~ in Missouri with Hashimoto's You are AWESOME! Thank you for writing this book. I just read the part about Diabetes…a book like yours has been needed, as you know. Thank you again for your courage to get what neds to be said in front of thousands. Now the consciousness will be raised! :-)
~Amy~
in Missouri with Hashimoto’s

]]> By: Margaret http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-110 Margaret Wed, 09 Apr 2008 14:00:49 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-110 Thank you for writing your book. In 2003 our one-year old daughter was completely paralyzed with Guillan-Barre. Amazingly, she made a full recovery but we were also told that she would not get it again. Now, our seven-year old son has developed Type 1 diabetes. I am very concerned about the cause of both of these auto-immune disorders and am worried that our two other children could be at higher risk as well now. Thank you for writing your book. In 2003 our one-year old daughter was completely paralyzed with Guillan-Barre. Amazingly, she made a full recovery but we were also told that she would not get it again. Now, our seven-year old son has developed Type 1 diabetes. I am very concerned about the cause of both of these auto-immune disorders and am worried that our two other children could be at higher risk as well now.

]]> By: Ashley in Arlington, VA http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-76 Ashley in Arlington, VA Sat, 22 Mar 2008 14:07:37 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-76 Thank you so much for bringing attention to this epidemic. It floors me that there is very little research money for autoimmune diseases with so many in our nation affected. Most every woman in my family has an autoimmune disease, and it's taken them years to get the proper diagnoses. Maybe there will be scientific breakthroughs in my lifetime. Thank you so much for bringing attention to this epidemic. It floors me that there is very little research money for autoimmune diseases with so many in our nation affected. Most every woman in my family has an autoimmune disease, and it’s taken them years to get the proper diagnoses. Maybe there will be scientific breakthroughs in my lifetime.

]]> By: Kevin Horn http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-65 Kevin Horn Thu, 20 Mar 2008 18:02:26 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-65 I was just wondering if you have found any connection with autoimmune disease and Chronic Fatigue Symptom and/or Fibromyalgia. My symptoms sound like the light version of most of the autoimmune diseases. I've been tested for many of them up to 3 times but all are negative. I even had one doctor tell me it looked like I had an autoimmune disease that didn't fit the few categories medical science has manage to come up with so far. This is because unexplained inflammation and a constant fever were very obvious so it was clear I had something. I was just wondering if you have found any connection with autoimmune disease and Chronic Fatigue Symptom and/or Fibromyalgia. My symptoms sound like the light version of most of the autoimmune diseases. I’ve been tested for many of them up to 3 times but all are negative. I even had one doctor tell me it looked like I had an autoimmune disease that didn’t fit the few categories medical science has manage to come up with so far. This is because unexplained inflammation and a constant fever were very obvious so it was clear I had something.

]]> By: Jann Breslin http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-64 Jann Breslin Thu, 20 Mar 2008 16:53:47 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-64 I have autoimmune disease that presents as vitiligo, Hashi's, and it looks like I'm trying to get Sjogren's too. I have a brother with Hashi's and another brother that presented with Guillain Barre (GBS) last year in 2007. He worries about a reoccurrence of his GBS...although his doctors say it's rare to be stricken twice. Hmmmmnnn.... I think there needs to be more focus on what's at the root of autoimmune disease instead of just treating symptoms...and suppressing the immune system. At the encouragement of a naturopath I decided to research and then try LDN Therapy -- Low Dose Naltrexone -- to stop the progression of my autoimmune disease. If you are not familiar with LDN I encourage you to investigate. http://www.lowdosenaltrexone.org/ The website is not very sophisticated but don't let that discourage you from digging in -- there is a lot of information there. I have also helped with the launch of a new website called "Alternative Health Solutions for Thyroid Autoimmunity". http://www.ahsta.com/ I think it's going to take the combined effort of proactive patients and the scientists to figure autoimmunity out. I have autoimmune disease that presents as vitiligo, Hashi’s, and it looks like I’m trying to get Sjogren’s too. I have a brother with Hashi’s and another brother that presented with Guillain Barre (GBS) last year in 2007. He worries about a reoccurrence of his GBS…although his doctors say it’s rare to be stricken twice. Hmmmmnnn….

I think there needs to be more focus on what’s at the root of autoimmune disease instead of just treating symptoms…and suppressing the immune system.

At the encouragement of a naturopath I decided to research and then try LDN Therapy — Low Dose Naltrexone — to stop the progression of my autoimmune disease. If you are not familiar with LDN I encourage you to investigate. http://www.lowdosenaltrexone.org/

The website is not very sophisticated but don’t let that discourage you from digging in — there is a lot of information there.

I have also helped with the launch of a new website called “Alternative Health Solutions for Thyroid Autoimmunity”.
http://www.ahsta.com/

I think it’s going to take the combined effort of proactive patients and the scientists to figure autoimmunity out.

]]> By: Ann Brandt http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-52 Ann Brandt Sat, 15 Mar 2008 17:42:52 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-52 I, too, was paralyzed with Guillain Barre. On December 4, 1996 the disease presented with unremitting and excrutiating pain--coincidentally several weeks after receicving a flu shot. SInce then I have written and published a book about the experience--Learning to Walk Again: How Guillain Barre Taught Me to Walk a Different Path--and have become a liaison and volunteer for the Guillain Barre Foundation International, based in PA. In the 11 years since my bout with the disease I have seen cases of GBS increase in number and recurrence. Most troubling are the cases of CIDP--Chronic Inflammatory Demylelinating Polyneuropathy. This does seem to fit what we're seeing in this book and in other evidence of the human race poisoning itself. I, too, was paralyzed with Guillain Barre. On December 4, 1996 the disease presented with unremitting and excrutiating pain–coincidentally several weeks after receicving a flu shot. SInce then I have written and published a book about the experience–Learning to Walk Again: How Guillain Barre Taught Me to Walk a Different Path–and have become a liaison and volunteer for the Guillain Barre Foundation International, based in PA. In the 11 years since my bout with the disease I have seen cases of GBS increase in number and recurrence. Most troubling are the cases of CIDP–Chronic Inflammatory Demylelinating Polyneuropathy. This does seem to fit what we’re seeing in this book and in other evidence of the human race poisoning itself.

]]> By: Jennifer Heath http://donnajacksonnakazawa.wordpress.com/2008/03/12/why-i-wrote-the-autoimmune-epidemic/#comment-50 Jennifer Heath Thu, 13 Mar 2008 15:09:20 +0000 http://donnajacksonnakazawa.wordpress.com/?p=5#comment-50 I have read about half of your book on autoimmune diseases and have found it very interesting. I looked in the appendix of autoimmune and related diseases and did not see autoimmune pancreatitis listed. I was diagnosed with autoimmune pancreatitis in 2002. Have you heard of anyone else with this autoimmune disease? I have read about half of your book on autoimmune diseases and have found it very interesting. I looked in the appendix of autoimmune and related diseases and did not see autoimmune pancreatitis listed. I was diagnosed with autoimmune pancreatitis in 2002. Have you heard of anyone else with this autoimmune disease?

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