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This topic contains 10 replies, has 1 voice, and was last updated by Frederick 7 months, 3 weeks ago.
August 29, 2012 at 5:01 am #3281
Thank you for creating this website. I have found research of MTHFR is very lacking, so your information is extremely helpful.
I have a homozygous mutation at C677T and have just been diagnosed with MS. My blood serum homocysteine, Bs, and Folate levels are all within range. Vitamin D is at 48. My neurologist ordered a SpectraCell complete nutritional blood panel that will evaluate how the B vitamins I take are getting absorbed.
My research is two-fold:
First, exploring which MS pharmaceutical drug might be most compatible with my body, and whether they are contraindicated with MTHFR mutations. Are you knowledgeable about this?
Second, what nutritional supplements and dosage do I need? Do you have an MS protocol in light of MTHFR? I read your MTHFR protocol, but I’m wondering if anything additional is needed for a patient with both MTHFR and MS? Are there other resources?
Thank you.August 29, 2012 at 4:20 pm #3282
You can get your detox SNPs tested to see how various drugs metabolize. Either the Detoxigenomics panel or 23andme.com, then use the Detoxigenomics sample report to interpret. It’s cheaper to use 23andme, but you have to interpret it yourself. There is someone from the Phoenix Rising forum working on a web based converter and analysis if you decide to go that route.
Go to this page and download the Detoxigenomics Profile Sample Report pdf and see if it will be helpful. http://www.seekinghealth.com/detoxigenomic-profile-test.html. If MS drugs are not listed, maybe your doc can tell which category they might fit into.August 29, 2012 at 9:47 pm #3286
Do you consume anything with aspartame in it? People have been diagnosed as having MS, but their symptoms went away when they stopped consuming aspartame.August 29, 2012 at 11:28 pm #3289
I was diagnosed with MS 3 yrs. ago. I am also homo 677 and my Vit D was also 48 when diagnosed. I was diagnosed after a bout of optic neuritis. I also had a lumbar puncture. It\\\\\\\’s good that your doctor is giving you the Spectracell Panel-I have a doctor that is not as open minded and am currently looking for a new neurologist.
The decision as to what medicine to treat with is a personal one. Make sure you do your homework-don\\\\\\\’t believe everything you\\\\\\\’re told. I use low dose naltrexone (LDN)-very cheap (unpatentable by the pharmaceutical companies so don\\\\\\\’t expect them to tell you about it!) and not really an MS drug-I love it. I also am gluten free (really grain free)low dairy and low sugar. I protect my gut with probiotics and eat healthy (avoid anything processed) and really feel great! Better than I did 10 yrs. ago. Lynn is right about the aspartame. I accidentally ingested some a couple of months ago and was off kilter for at least a week. Avoid MSG it will probably mess you up too. A great book to read: The MS Recovery Diet it really helped me understand leaky gut and how to control MS through diet. I do not agree with their assertion that MS\\\\\\\’rs need to be low fat just careful not to consume bad fats (high omega 6\\\\\\\’s). I follow a paleo diet. I take fish oil-am currently getting ready to switch to Krill oil. I realize your question is about MTHFR and I have to admit I am still figuring it out. I have had to start really slow on the supplements breaking them into small pieces to be able to tolerate them. After you get your panel done you should probably have a session with Dr. Lynch.
What I really want to let you know is that you do have control over this disease to a great extent. There are many people who clean up their diet and never have another exacerbation-it takes time (and work!) but you can do it and travel into your later years healthy and vibrant. That is what I plan to do! I wish you the best of luck! google: Terry Wahls TedX video you\\\\\\\’ll see what you can do with diet (she also has a book out). Elana of elanaspantry.com also has MS and writes about it on her blog sometimes.September 1, 2012 at 10:03 pm #3328
Thank you for your responses.
Caledonia, I will check out your resources. I’ve never heard of them and they sound interesting and like they could be very useful. Thank you.
Lynn_M, no I don’t consume anything with Aspartame in it. Glad to know it can cause those symptoms, though.
Sara, it sounds like you and I have a lot in common. I am going to investigate LDN. Did your neurologist agree to prescribe it for you? Copaxone is currently on order for me, but I’m not committed yet, so I’m still researching as much as I can. I appreciate knowing what works for you and for pointing me to Terry Wahl’s video and Elana’s blog. I’m starting to take Resveratrol and Curcumin along with intense Bs. I will add MS Recovery Diet to my reading list. I’m essentially eating Paleo now too, which is a huge adjustment! I’ve been thinking of beginning Krill Oil too – what dosage of all omegas do you take? Thank you for your encouragement! It’s so easy to feel overwhelmed and pushed into treatment though fear.
Thanks again, everyone!
- CatherineSeptember 4, 2012 at 8:26 pm #3367
Yes, my neurologist prescribed the LDN for me-reservedly though. He had a neurolgist friend that swore by its effectiveness. He was doubtful though. I had done my research on it and wanted it. It is only about $90 for a 3 month supply. I did start out on Copaxone. I had a constant sore throat on it. What bothered me the most about Copaxone is that a 250 lb. man would take the same dose as me, a 130 lb woman. Wouldn’t that be lowering my immune system a lot more than his? I don’t want to influence you though-there are lots of people out there who are very happy on Copaxone. There are also some who claim LDN did not work for them. One thing to know about LDN-when you first start taking it your symptoms can worsen-usually only for about 2 weeks. I also take melatonin with it before bed especially in the summertime because light (or lack thereof)effects melatonin secretion. I am on 2 mg. of LDN- anything higher I can’t sleep. My sister (who is also homo C677T) also takes LDN for her undiagnosed autoimmune problems and takes 4 mg. with no trouble sleeping. I have gone off LDN twice thinking that maybe it wasn’t really doing much for me and quickly realized how much it actually was. You just need to find out what works for you.
With all this said I am continually learning. Sometimes I overindulge in dairy and realize I’m not feeling as good as normal and I have to give myself a good talking to! A little butter tends to be ok for me but ghee works better. I was completely dairy free for a year and never felt better in my life-I am striving to get back to that.
I was so scared when I was first diagnosed-for me and for my husband and children. Everything I read made me feel like with every year that went by I would become more and more tired and handicapped and that my future would be homebound. I never believed I would feel better now than I did when I was younger. That said it takes research, research, research on your own unique issues. The whole mthfr thing is very confusing and no doubt extremely important in our search for health.
Google *heartfixer.com methylation* for a chart of all the other mutations that can go along with mthfr. He’s a cardiologist in Toledo, Ohio that treats his patients for mthfr. The chart has heped me understand our possible issues a little better. marksdailyapple.com if you haven’t already discovered it is a great paleo resource. Also chriskresser.com is a great resource for understanding different health issues.
I don’t take fish oil everyday usually 3-4 x per week. 1 1/2 tsps. which is about 7 ml. of Integrative Therapeutics Eskimo brand. I will be switching to Krill oil-I’m not sure what dosage right now. I take primrose oil-but more because of my mild rosacea (proof that my gut is still not as healthy as I want it to be).
chowstalker.com is a great paleo recipe source. I do eat some white rice and potatoes-makes it much easier to cook for a family and I don’t think I need to be ultra low carb. I have experimented with low carb and find I do better with a moderate amount. Sugar messes me up and I never touch gluten!September 12, 2012 at 2:00 am #3458
Thank you for your response, Sara. I truly appreciate the information about LDN, the food suggestions, website recommendations, and encouragement. I am very scared right now that I will get progressively worse as the years pass. I just want to know what will keep that from happening and I\’ll do it! It\’s figuring out what those things are that is completely boggling my mind right now. I need a path and clarity! It\’s wonderful to connect with you and again, I truly appreciate you. I\’ll be in touch. – CatherineSeptember 12, 2012 at 2:29 am #3460
I’ve been reading “Could It Be B12 An Epidemic of Misdiagnoses”, and one of the diseases it mentions is MS, and can sometimes be misdiagnosed. The bood contains several cases where it was as simple as taking the right dosage and form of B12. There are many correct diagnoses, but worth a try if you haven’t yet. Besides needing it for the MTFHR mutation.September 12, 2012 at 2:30 am #3461
oops, meant book instead of blood.April 5, 2014 at 8:23 am #381314
This is the right site for everyone who wishes to understand this topic.
You realize a whole lot its almost tough to argue with you (not that I personally would want to…HaHa).
You definitely put a new spin on a subject which has been discussed for many
years. Great stuff, just wonderful!April 6, 2014 at 5:43 am #381339
In fact no matter if someone doesn’t know then its up to other users that they
will help, so here it takes place.