Tested Positive For Mthfr, Bad Reaction To Medication

[Sunshinegirl]

I finally got my Dr. to do this test and it came back positive. I don't know which number it was positive for. I have read a lot so far about it and got a supplement suggested here. What else can I do? Im so skittish about changing anything because of POTS. I still don't know what else is involved with the POTS dx as I am still waiting on results of small nerve fiber tests. Right now the theory is that my small nerve fiber issue might be causing the high heart rate. This might be the connection between the 2?

What has anyone else discovered about the connection and possible treatments?

I have also been doing a Paleo diet because of suspected mast cell involvement. I have not been able to get the blood work done for it because it comes on swift and hard...so I cant drive.

I had a bad swelling attack from beta blockers last week. Since then I have my HR recorded as high as 213 bpm. That is the highest I have seen it. I could not drink or eat much of anything so I think my salt levels dropped out and I had low blood volume. Working to restore it now but feel very bad.

How do you manage POTS, mast cell and MTHFR?

[Chaos]

Finding out which one of your tests was positive is probably an important first step. For example, having the A1298T variation, even homozygous, doesn't have as much of an effect as having the C677 positive- as far as methylation and homocysteine levels go. However, it is more involved with energy production and how you recycle BH4 to BH2 and back.

Depending on which of those is positive, it will change which supplements are most helpful.

Have you done 23 & Me testing? It gives you a lot more information on various genes that may be involved with all this and may help you sort out which supplements will be more helpful and which will be less helpful.

One resource I've found helpful is this site where this person collected a ton of resources and info to help sort thru some of this methylation info.

http://forums.phoenixrising.me/index.php?entries/caledonias-methylation-links.1744/

The Heartfixer site that they have listed in that link has a lot of good info as do several of the other sites.

Good luck sorting thru all this. It's incredibly complicated and a lot of trial and error.

I suspect that the POTS, mast cell, MTHFR and even Ehler's Danlos are all parts of the same picture. Just not one that is well defined or characterized yet.

[Sunshinegirl]

Yes and this explains why it has been so hard to get a dx for so many years! Its like trying to find a needle in a hay stack and some of these conditions don't have traditional pharmacological treatments. I got my testing done through insurance. The results did not give me a specific number as to which one it is. Ill have to get a more thorough report from the dr. This Heartfixer site sounds like what I may need. So far I have changed my whole life to this rigid routine with some benefits but have found that in the last 2 years or so, my heart rate has become worse and my main discomfort compared to the other symptoms.

Thanks for the info.