need some opinions

Information about how to manage or reduce the severity of BFS symptoms

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need some opinions

Postby mwagner on July 21st, 2013, 5:49 pm

I just found out that a friend of mine who suffers from anxiety, and had a number of tests run (gluten sensitivity, progesterone, etc.) has two defective genes that keep her body from processing folic acid into L-methylfolate which is needed by the brain for the other neurotransmitters to work properly. Most people either have two normal genes or one normal and one defective. This could lead to both mental conditions (depression/anxiety) and cardio vascular conditions. In fact, a lot of people with anxiety/depression issues have been shown to have two defective genes.

Has anyone been tested for this?

Also, she found out that she is deficient in Glutathione, which led me to this article, which I think has been addressed before on this forum.
http://www.huffingtonpost.com/dr-mark-h ... 30494.html

This article was fascinating to me.

There was one poster on here who said her twitches practically stopped after taking Immunocal. I'm thinking of getting tested for both of these, but thought I might just take Immunocal because of it's health benefits.

Thoughts? Has anyone done this? It's expensive, so if others have tried it and it doesn't work, I'd really like to hear from you.

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Re: need some opinions

Postby Yuliasir on July 21st, 2013, 11:51 pm

Nope, I did not because gene testing is still rare and usually is done in case of much more prominent dficiencies, but I was always sure that there is a genetic basis under my own condition because I am visibly deficient in collagene in my joints and this is genetic condition, and it is often accosiated with high incidence of anxiety, so it should be some link between those conditions :) I also have very early onset of GAD which suggest my compensatory abilities were much lower... By the way, collagene deficiency also may lead to cardiovascular events, aneurisms and even premature death in severe cases (like in some really bad cases of Marphan syndrome), o probably it is really related.
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Re: need some opinions

Postby chicagobfs on July 22nd, 2013, 12:38 am

What test do you have exactly in mind? what is the name of that?
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Re: need some opinions

Postby chrissi on July 22nd, 2013, 2:10 am

Are you talking about MTHFR C677 mutation, because it sounds like it?I have both genes affected and it is part of my thrombophilia.
I never knew it was linked to anxiety. I stopped taking the extra folic acid ( actually l methylfolate, not the regular folic acid, I think the american brand name is deplin) after my littlest baby stopped full nursing and started to eat big amounts of other foods too,a few months before my BFS outbreak) because I have an additional more severe genetic defect for thombophilia that has the same effects on my koagulation and is under surveillance anyway.
My dad and sis both have both of them affected ( as I often mentioned both GAD sufferers and twitchers) , my mom only one ( no anxiety, no twitches). I had those tests ( and many more) when I was having all those miscarriages, and they found this mutation. So it was obvious that both parents are carriers, my parents were then tested. Then they tested my sis to prevent her from miscarrying when she tried to conceive. Noone ever told us about a link to anxiety, that is weird.

But I want to add that I am totally fine these days , no BFS or anxiety ( spiders and flying, OK...), and I take no other supplements but vit D. So maybe this is another puzzle piece for some, but I am convinced not the full answer. We are so much more than just our genes ,and we ourselves have a lot of power to change things. I do not have a lot of information other than what my koagulation specialist told me and so far have never heard about a link.

I am not writing this to discourage people from testing for it. I have always had a feeling that there's a genetic component in anxiety, and that anxiety is linked to BFS. But there are other factors that will influence our genetic predispositions. An most of all, I do not want anyone to expect the " magic pill" to solve all the problems. I have seen to many on here people here having big expectations and ending up disappointed. So if you have anxiety, especially "hederitary" or thrombosis in your family, go test for it if you like to. I am thrilled to see the outcomes, maybe I am not the only "mutant" on here.Well, but I am always just trying to protect you guys from disappointments, there are so many vulnerable people on here.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: need some opinions

Postby BFSBurger on July 22nd, 2013, 12:12 pm

I have been taking a Folic Acid / B12 liquid drop supplement for quite some time now.

http://www.amazon.com/Bluebonnet-Natura ... cid+liquid

I only do half a dose because the b12 dose is (as always) very high ... and i prefer moderation with such things. But its been a part of my regimen for awhile.

As for genetic testing, 23andme have the latest greatest from what I have been reading. The whole gene testing thing is becoming a huge new industry and quite a few people on the Phoenix Rising CFS forums have already ordered theirs. The people on that forum are heavily into researching their condition, discussing the latest data, etc. Not something you run into on this forum. So if you do get the test i would recommend going there to discuss the results with those people. They've always been extremely helpful and involved in my researching of this condition, and their medical knowledge blows away any doctors I've ever met: http://forums.phoenixrising.me/index.php

The 23andme testing site: https://www.23andme.com/

-Burger-
Last edited by BFSBurger on July 22nd, 2013, 12:21 pm, edited 2 times in total.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: need some opinions

Postby chrissi on July 22nd, 2013, 12:15 pm

Oh it does not matter how much folic acid I take. I cannot transform it into its active form
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: need some opinions

Postby muppetdog on July 22nd, 2013, 8:51 pm

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Re: need some opinions

Postby mwagner on July 23rd, 2013, 12:28 pm

Thank you guys so much for this information!!

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Re: need some opinions

Postby aztwitchy on July 23rd, 2013, 1:28 pm

100 bucks for whey protein.....wow...I'm in the wrong line of work.
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Re: need some opinions

Postby mwagner on July 23rd, 2013, 1:40 pm

I know aztwitchy! And even more for the "premium" stuff. But, if it helps me, I guess it's worth it. Ugh.
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Re: need some opinions

Postby muppetdog on July 23rd, 2013, 1:44 pm

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Re: need some opinions

Postby aztwitchy on July 23rd, 2013, 2:33 pm

mwagner wrote:I know aztwitchy! And even more for the "premium" stuff. But, if it helps me, I guess it's worth it. Ugh.


let me know if you end up trying this out.

i read that ladies post about it working for her...but for some reason I couldn't get past my suspicious she was advertising.
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Re: need some opinions

Postby fargo on July 24th, 2013, 4:46 am

this stuff is immuno related and is supposed to 'boost' the immuno system.. now considering our condition is also immuno related, do we really need it?

I like THIS site a lot recently:

http://www.sciencebasedmedicine.org/?s= ... cal+system

I'm about to completely give up on supplements except magnesium / for occasional cramps / and vit D in wintertime..
edit

instead of using the term 'boosting' immuno system, perhaps it'd better to say : ' increase immune activity'..
now things start to look a bit different .. as it might cause unnecessary inflammation I don't want that..
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Re: need some opinions

Postby chrissi on July 24th, 2013, 5:39 am

I supplement Vitamin D, because it is well known we are almost all deficient due to our lifestyle. I will get my Homocysteine checked again now, because I know I carry that mutation. Vitamins if high dosed , are only sold in pharmacies here and the pharmacist usually asks you about your tests and deficiencies. Because synthetic vitamins can be harmful if you are not deficient. If you buy immune boosterst like echinacea and stuff ( very commonly used here) you will be informed that it is not for long term use, because it is not yet sure that they do not cause autoimmune conditions. If you have any concerns about your health, please talk to a doctor you trust. Be it a conservative one or a doctor that has additionally studied naturopathy. Do not just assume that you have a certain deficiency, and take pills to treat something you probably do not have.
This does not apply to people who have known genetic mutations in their family , so if you know genetic calculation you will sometimes know if someone is carrier or not and do not need the test itself.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: need some opinions

Postby mwagner on July 24th, 2013, 11:17 am

I don't think immunocal is an immune booster, but something that helps build glutathione. It works differently.

From the doctor's article:

In treating chronically ill patients with Functional Medicine for more than 10 years, I have discovered that glutathione deficiency is found in nearly all very ill patients. These include people with chronic fatigue syndrome, heart disease, cancer, chronic infections, autoimmune disease, diabetes, autism, Alzheimer's disease, Parkinson's disease, arthritis, asthma, kidney problems, liver disease and more.

I think we are in line with people who have chronic fatigue syndrome and possibly some sort of autoimmunity. Alzheimer's and Parkinson's are neurological diseases.

I figured this wouldn't hurt. If you look at the ratings on Amazon from various people, it seems really beneficial for all sorts of things. I'm going to test for glutathione deficiency, but after reading the article I posted, it really sounds like this is something anyone would need.

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Re: need some opinions

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