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MTFHR Testing
A MyFibroTeam Member asked a question 💭

My sister had a genetics test done that was looking for the MTHFR mutation. There is a Doctor in Tri Cities Wa that is specializing in the study of MTHFR and prescribing Deplin for the treatment. I have looked it up and read about it. I was wondering if any of you out there had any experiences with this study or have tried Deplin to help treat your nerve pain? Anyway my sister has OCD and Depression and she is doing great with using Deplin.

posted December 28, 2015 (edited)
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A MyFibroTeam Member

Ok I did more research. MTHFR is the inability to break down Methylfolate. Methylfolate is the natural vitamin we get in our food. Folic acid which is in supplements or vitamins in pill form is the synthetic kind. The nutritionist put those two things together back in the sixties because they seen too many mothers giving birth to babies with birth defects. Folic acid is ok for women of child bearing years. It can be very harmful for people who are older. It can cause liver damage among other issues. Deplin is Methylfolate broken down for those with the MTHFR mutation. Deplin is the only Methylfolate designed to be able to cross the blood brain barrier. For those of you taking vitamin b complex, you are taking the synthetic kind and that may be why you are getting sick and not better. folic acid builds up in your liver and causes you to feel sick. Ask your Doctor or find one who knows more about Deplin and see if that can help. I am going to get the test done and try the therapy.

posted December 29, 2015 (edited)
A MyFibroTeam Member

I have been using Deplin for several years. I also take Cymbalta for depression and pain. The Deplin enhances the effects of the Cymbalta. I think that it does help. I also take pain medication (opioids) which most Doctors will not prescribe but helps me tremendously. I actually have times throughout the day where I don't have pain. In addition, my Doctor prescribes Lidocaine patches to put directly on the areas that hurt the worst. I can wear them 12 hours at a time and they really relieve the burning pain I get in my lower back. I have used them on shoulders and upper back also. In addition, I take a new ADD drug that helps a lot with the fog. I have been seen at one if the top FMS clinics at Oregon Health and Sciences University in Portland, OR. They put together a treatment plan for me. I tried many other things before we found out all the things that do work really well. I still don't sleep but am changing medication for that this week. I am not pain free and I have low energy a lot but I am miles from where I was 20 years ago when I was diagnosed. Good luck to everyone and don't give up seeking all the treatments that are available.

posted January 21, 2016
A MyFibroTeam Member

Not too many Doctors know about this test just yet, but it would be worth the mention to your regular Doctor. The doctor here in Washington state name is Dr. Rawlins he is a OBGYN first but specializes in genetics. Google his name and you can find what you need on this mutation. Then find Chris Kresser he is a nutritionist that can explain how methylfolate works. I feel like it is worth looking into over dismissing it. If you bring that info to your Doctor they more than likely would be able to help you with getting the test done.

posted January 2, 2016
A MyFibroTeam Member

I was also seeing on some web sites that people have to experiment with doses since it is a very individual thing to treat. Some people only need a little and some need a lot. From what I know about MTHFR it is a genetic mutation of a gene in our bodies that prevents us from breaking down vitamins we get from food and supplements. Deplin is a vitamin drug that has already broken down vitamins in a capsule. I don't know much about it except that you do have to be careful with the dosing. The test will see if you have the mutation and I think also what vitamins you are deficient in.

posted December 29, 2015 (edited)
A MyFibroTeam Member

I also have gene mutation for vitamin D so I need to take supplements. I have osteopenia too with several fractures in my spine. Are you taking and bone building supplements? I used to take fosamax but not anymore.

posted December 28, 2015

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