6 thoughts on “Things That Plague Us: Chronic Fatigue Syndrome / ME”
Jes
Thank you thank you for posting the link that distinguishes the difference between ME &CFS. Ive been on this website reading everything I can for my friend and her son that got his mthfr results……. then saw this article and clicked it *since I have ME* Too often it is wrongly clumped together and I just had to say thank you for acknowledging the difference. *thats rare and i get sooooo mad when i see people not do that* Truly…. its appreciated.
Andrea, this is all new to me and very confusing. I’ve tried for years (since 1981) to figure out what my own problems could be, without much luck, or even being taken very seriously. Last year, my 41 year old son was sick with what was being treated as a respiratory infection. After 3 rounds of antibiotics and not getting well, he went back to the doctor and asked if they might be missing something. The doctor did an EKG and referred him to a Cardiologist. Because the first visit was going to be a consultation and he didn’t feel like he could make it, we convinced him to go to the ER. They admitted him to the hospital with an enlarged heart and clots in several different locations. Within a couple of days, he was transferred to a larger facility, in heart failure. To make a long story short, he’s had several balloon pumps, two LVADS that both clotted and after regaining a little heart function, was explanted. Within a couple of months he was put back in the hospital and is currently waiting for a heart transplant. In February of last year, I begged and pleaded with the team and especially hematology, to check him to see if there were any underlying issues. Finally, after the last balloon failed in the IABP, it had to be removed because it was clotted at the graft and a new one could not be inserted. He is currently without an assist pump and I had to beg them to keep him on Bivalirudin. While he was off anticoagulation, they finally did additional testing and found he is homozygous for MTHFR C677T. Why do some of the doctors on his team acknowledge this could be an issue and some just poo poo the idea? I think this could be a very big deal! If this is an underlying issue, wouldn’t a new heart suffer the same problems that caused the first one to fail? Help, please!
Hi Ms. A – my goodness! I am so sorry to hear about all that you and your son have been through. My personal assessment of the doctors is that MTHFR seems to be controversial. You speak to some who “poo poo” it as you’ve said, and others who do take it seriously. You are not alone in this – many, many people are finding the same attitudes in the course of their journeys to better health. I stand with the doctors and researchers who are taking it seriously – and there are many of those, just harder to find. I believe that as education and awareness around the importance of methylation pathways and MTHFR (and other important) gene mutations (SNPs) grows that more doctors will take it seriously. Often there are other factors at play – it would require more extensive testing.
I have not actually researched the issue of blood clots very extensively. What I recommend for you is to find a doctor who does take this seriously to assist you as you work with the other doctors. Hyperhomocysteinemia is not a new concept. Has your son’s homocysteine been checked? There are some doctor lists on the Resources page of this website. I wish your son a speedy recovery and that you have some success on your quest to find a doctor who can help you. I wrote an article about homocysteine a little while back. I’ll be launching a community in the coming weeks where you can chat with others about these issues. Good luck!
Andrea, you are brilliant. Thank you for these wonderful posts. I get overwhelmed with all the science, even when you write for unmedical peeps, but have so much gratitude for your work, and always gain insight as well as information to bring to my functional medicine docs. I look forward to your glutathione post too, and wanted to mention that I’ve done Ashok Gupta’s work for MCS – and his program was started for MC/CFS and his work is inspired too. If you and your readers are not familiar with his work, it’s called Amygdala Retraining. It’s really helped me with a lot of issues, symptoms, mood, negativity, thoughts, happiness, and joy. xo, Marcia from the-eco-nest.com
As I have no personal experience with it I can’t comment, but thank you so much for sharing your results here. So wonderful to hear that something has helped you!
I am not a doctor and THIS BLOG DOES NOT PROVIDE MEDICAL ADVICE. This site is about my own healing journey. If you know or believe that you have a MTHFR mutation, hypothyroidism or other health problems, please get yourself tested and find a doctor or natural health practitioner who is willing to help you find the root cause and develop a personalized treatment plan for your particular body. This site is provided for informational purposes only, and the content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider for answers to any questions you may have regarding a medical or health related condition. The content here is not intended to be relied upon for medical diagnosis or treatment. Always consult a health professional before making dramatic changes to your diet or lifestyle and before taking supplements. You are ultimately responsible for your own health. Reliance on this website and its content is solely at your own risk.
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Jes
Thank you thank you for posting the link that distinguishes the difference between ME &CFS. Ive been on this website reading everything I can for my friend and her son that got his mthfr results……. then saw this article and clicked it *since I have ME* Too often it is wrongly clumped together and I just had to say thank you for acknowledging the difference. *thats rare and i get sooooo mad when i see people not do that* Truly…. its appreciated.
Andrea Post author
My pleasure, Jes – I like to get things right!
Ms. A
Andrea, this is all new to me and very confusing. I’ve tried for years (since 1981) to figure out what my own problems could be, without much luck, or even being taken very seriously. Last year, my 41 year old son was sick with what was being treated as a respiratory infection. After 3 rounds of antibiotics and not getting well, he went back to the doctor and asked if they might be missing something. The doctor did an EKG and referred him to a Cardiologist. Because the first visit was going to be a consultation and he didn’t feel like he could make it, we convinced him to go to the ER. They admitted him to the hospital with an enlarged heart and clots in several different locations. Within a couple of days, he was transferred to a larger facility, in heart failure. To make a long story short, he’s had several balloon pumps, two LVADS that both clotted and after regaining a little heart function, was explanted. Within a couple of months he was put back in the hospital and is currently waiting for a heart transplant. In February of last year, I begged and pleaded with the team and especially hematology, to check him to see if there were any underlying issues. Finally, after the last balloon failed in the IABP, it had to be removed because it was clotted at the graft and a new one could not be inserted. He is currently without an assist pump and I had to beg them to keep him on Bivalirudin. While he was off anticoagulation, they finally did additional testing and found he is homozygous for MTHFR C677T. Why do some of the doctors on his team acknowledge this could be an issue and some just poo poo the idea? I think this could be a very big deal! If this is an underlying issue, wouldn’t a new heart suffer the same problems that caused the first one to fail? Help, please!
Andrea Post author
Hi Ms. A – my goodness! I am so sorry to hear about all that you and your son have been through. My personal assessment of the doctors is that MTHFR seems to be controversial. You speak to some who “poo poo” it as you’ve said, and others who do take it seriously. You are not alone in this – many, many people are finding the same attitudes in the course of their journeys to better health. I stand with the doctors and researchers who are taking it seriously – and there are many of those, just harder to find. I believe that as education and awareness around the importance of methylation pathways and MTHFR (and other important) gene mutations (SNPs) grows that more doctors will take it seriously. Often there are other factors at play – it would require more extensive testing.
I have not actually researched the issue of blood clots very extensively. What I recommend for you is to find a doctor who does take this seriously to assist you as you work with the other doctors. Hyperhomocysteinemia is not a new concept. Has your son’s homocysteine been checked? There are some doctor lists on the Resources page of this website. I wish your son a speedy recovery and that you have some success on your quest to find a doctor who can help you. I wrote an article about homocysteine a little while back. I’ll be launching a community in the coming weeks where you can chat with others about these issues. Good luck!
marcia
Andrea, you are brilliant. Thank you for these wonderful posts. I get overwhelmed with all the science, even when you write for unmedical peeps, but have so much gratitude for your work, and always gain insight as well as information to bring to my functional medicine docs. I look forward to your glutathione post too, and wanted to mention that I’ve done Ashok Gupta’s work for MCS – and his program was started for MC/CFS and his work is inspired too. If you and your readers are not familiar with his work, it’s called Amygdala Retraining. It’s really helped me with a lot of issues, symptoms, mood, negativity, thoughts, happiness, and joy. xo, Marcia from the-eco-nest.com
Andrea Post author
Thank you so much for your lovely comment, Marcia – I am so happy to help!
I assume you are talking about this program? http://www.guptaprogramme.com/
As I have no personal experience with it I can’t comment, but thank you so much for sharing your results here. So wonderful to hear that something has helped you!