I have a wonderful Rheumatologist who seems to be ahead of the game when it comes to innovative treatments for my disease. I have tried many supplements, bio-identical treatments, medications, etc. Unfortunately, I am a tricky case. I have MCS and I react to almost EVERYTHING!! So treatment options are limited.
I have Chronic EBV like so many with my diagnosis and I am waiting for XMRV results - but suspect I have it.
I started taking the supplement Lauricidin about a year ago at the direction of my Rheumatologist. To learn more about Lauricidin check out the link: http://www.lauricidin.com/. It is suppose to smother viruses, and I think that it has helped in my case. My sore throats, swollen lymphnodes, and headaches have diminished since I have been on Lauricidin.
But what was most encouraging was that my EBV Titers have dropped for the first time since I became sick in 2007.
The tricky thing with Lauricidin is not taking too much or else you will have a Herxheimer reaction http://www.lauricidin.com/herxheimer_reaction.asp . I have learned when I start to feel a reaction coming on to back off for a few days and then go back on it.
Lauricidin has also been used as a supplement for Herpes, Lyme's and HIV sufferers, so with the new discovery of XMRV in Chronic Neuro-Immune Disease ~ It just makes sense to me that Lauricidin may help smother XMRV as well. It is not a cure for these viruses/retroviruses ~ But if it helps to remove some of them from my body ~ then I am all for it!
I have a long way to go to become well again ~ but the Lauricidin has given me a boost in the right direction.
Hope you have a fabulous weekend!
Now for the Disclaimer:
I am not a doctor. The information contained on this web site is not a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition. Nothing contained on this web site is intended to be a substitute for medical diagnosis or treatment.
Saturday, January 22, 2011
Friday, January 21, 2011
XMRV - Do You Have It?
Have you been diagnosed with Chronic Fatigue Syndrome/ME, Fibromyalgia, Chronic Lymes Disease, Atypical MS, Cancer, Autism or any other unexplained Neuro-Immune Disease?
If so, you could be infected with the newly discovered Retrovirus XMRV!
In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.
http://www.wpinstitute.org0809.pdf
http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk
This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.
On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.
http://www.rescindinc.org/fdanihpressconf.mp3
http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html
http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html
XMRV is similar to HIV, the retrovirus that causes AIDS.
Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.
For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/
If so, you could be infected with the newly discovered Retrovirus XMRV!
In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.
http://www.wpinstitute.org
http://www.sciencemag.org/
This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.
On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.
http://www.rescindinc.org/
http://www.cfscentral.com/
http://www.pnas.org/conten
http://www.pnas.org/conten
XMRV is similar to HIV, the retrovirus that causes AIDS.
Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.
For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org
Welcome!
Thank you for visiting my blog! I have started this blog to share my journey and hopefully help others afflicted with Chronic Neuro-Immune Diseases.
A Background About Me:
I am a wife and mom of 2 wonderful kids. Life was going along great until I was struck with a serious illness.
In 2007 I came down with the worst flu that I had ever experienced! After 2 months suffering, I began to see my family practice physician to complain of incapacitating exhaustion and malaise. My Physician began running tests for multiple diseases. In September 2007, still debilitated by exhaustion, my physician found that my Epstein Barr Titers were high, my lymphnodes were swollen, my throat was red and sore, and with my unrelenting fatigue gave me a diagnosis of Chronic Fatigue Syndrome. During this time, I began getting headaches every day and migraines at least 3 days a week, my throat also began closing, when I ate certain foods or took certain antibiotics. I began feeling excruciating pain all over my body, especially in my back, Achilles tendons, and legs. Sharp, pulsating pain began to travel through my body, and I noticed that my body was continuously flu like achy. My vision in my right eye (left eye is legally blind) began to blur, and I noticed that the fluorescent lights at work and stores made me nauseous and even sicker. I couldn't concentrate, could barely sit up, and felt "foggy" mentally all the time. I felt as if I'd been hit by a truck and was extremely weak and overwhelmingly, debilitatingly exhausted, beyond anything I'd ever experienced. I was barely able to shower and would drag myself back to bed, shaking from fatigue and malaise. Other than headaches, I had none of these symptoms prior to the onset of my illness in June 2007.
In December 2007, I began going to a Rheumatologist who also diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia, and began treating me for both conditions.
In January 2008, I began to forget simple tasks that I had always remembered before, and it was affecting my work. I constantly felt like I could not think clearly, like I was coming out of anesthesia. I would often come to work and fall sleep at my desk from illness and exhaustion – something that I had never done in the past. I went from a high performing employee to someone who could not stay awake or mentally function enough to do my job any longer. Outside of work, I spent my time resting in bed every evening and every weekend. I continued to struggle at work and it began to show.
In February 2008, I could no longer function. My manager watched my physical, and convinced me that I needed to go to my Doctor get a medical leave so that I could take some time to get well. I did not want to leave my career of 15 years, but knew that I was not able to function at work any longer. This was devastating to me.
Since then, my life has changed. I haven't (on orders of my physician and my body) been to work since February 2008. My new career is to get well and to help as many people as a can along the way!
Lucky for me, I live in Northern California right between Stanford University and the Whittemore Peterson Institute. I am a part of studies at both Institutions. With the science publication in October 2009 http://wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf linking the Retrovirus XMRV to Neuro-Immune Diseases, I am hopeful that Dr. Mikovits and her team have found what is causing my immune system to fail.
Living will illness everyday like I do is no easy task! My faith and internal strength are remarkably healthy, especially given all I've lost and
the uncertainty of my prognosis. I do my best to see every day as a new day, with tomorrow being one day closer to good health and getting my life and work back. It is my hope that treatment and a cure is just around the corner!
A Background About Me:
I am a wife and mom of 2 wonderful kids. Life was going along great until I was struck with a serious illness.
In 2007 I came down with the worst flu that I had ever experienced! After 2 months suffering, I began to see my family practice physician to complain of incapacitating exhaustion and malaise. My Physician began running tests for multiple diseases. In September 2007, still debilitated by exhaustion, my physician found that my Epstein Barr Titers were high, my lymphnodes were swollen, my throat was red and sore, and with my unrelenting fatigue gave me a diagnosis of Chronic Fatigue Syndrome. During this time, I began getting headaches every day and migraines at least 3 days a week, my throat also began closing, when I ate certain foods or took certain antibiotics. I began feeling excruciating pain all over my body, especially in my back, Achilles tendons, and legs. Sharp, pulsating pain began to travel through my body, and I noticed that my body was continuously flu like achy. My vision in my right eye (left eye is legally blind) began to blur, and I noticed that the fluorescent lights at work and stores made me nauseous and even sicker. I couldn't concentrate, could barely sit up, and felt "foggy" mentally all the time. I felt as if I'd been hit by a truck and was extremely weak and overwhelmingly, debilitatingly exhausted, beyond anything I'd ever experienced. I was barely able to shower and would drag myself back to bed, shaking from fatigue and malaise. Other than headaches, I had none of these symptoms prior to the onset of my illness in June 2007.
In December 2007, I began going to a Rheumatologist who also diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia, and began treating me for both conditions.
In January 2008, I began to forget simple tasks that I had always remembered before, and it was affecting my work. I constantly felt like I could not think clearly, like I was coming out of anesthesia. I would often come to work and fall sleep at my desk from illness and exhaustion – something that I had never done in the past. I went from a high performing employee to someone who could not stay awake or mentally function enough to do my job any longer. Outside of work, I spent my time resting in bed every evening and every weekend. I continued to struggle at work and it began to show.
In February 2008, I could no longer function. My manager watched my physical, and convinced me that I needed to go to my Doctor get a medical leave so that I could take some time to get well. I did not want to leave my career of 15 years, but knew that I was not able to function at work any longer. This was devastating to me.
Since then, my life has changed. I haven't (on orders of my physician and my body) been to work since February 2008. My new career is to get well and to help as many people as a can along the way!
Lucky for me, I live in Northern California right between Stanford University and the Whittemore Peterson Institute. I am a part of studies at both Institutions. With the science publication in October 2009 http://wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf linking the Retrovirus XMRV to Neuro-Immune Diseases, I am hopeful that Dr. Mikovits and her team have found what is causing my immune system to fail.
Living will illness everyday like I do is no easy task! My faith and internal strength are remarkably healthy, especially given all I've lost and
the uncertainty of my prognosis. I do my best to see every day as a new day, with tomorrow being one day closer to good health and getting my life and work back. It is my hope that treatment and a cure is just around the corner!
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