-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Just read this, very good article. Methylation is so complicated, but I believe it to be a big reason why some of us get and stay sick.
Posts: 486 | From USA | Registered: Jan 2012
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Thanks very much, Detraktor48: this great article is easily the clearest and most informative I have read in one place on the subject.
Posts: 1647 | From UK | Registered: Nov 2008
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Thank you! I've got some people who will want to read this info.
Posts: 2251 | From USA | Registered: Aug 2011
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Excellent article! With great links for additional information/videos, etc.
Thanks for sharing.
I think this is perhaps my biggest underlying issue. I've known about it for some time, but still want to learn more.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I agree with all of you that this is the most comprehensive article I've read, and it is understandable.
I love how she gives the links for the MTHFR site and 23andme, etc.
I think it would be helpful if this article were included in a permanent topic at the top of the board somewhere.
I suspect that there are lots of people who don't know they have methylation problems, and would respond better to treatment and detox if it were addressed properly.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, good info! Thanks!
BTW- Those with MTHFR- might want to write up YOUR test results and share them with your siblings and kids if you have any. They may want to be tested to help themselves in the future if they run into problems.
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
My only concern is that we don't really know alot about how much the MTHFR expression actually affects us-especially if 60% of the population has it. Detoxing is very important-and I know many with lyme and Co have the MTHFR gene-but so does the average person.
I don't see any harm in taking the active form of B12 and folate-but as to the other issues...I have apparently the gene which blocks the conversion of sulfur. According to the folks at MTHFR I should avoid all sulfur foods and drugs. Except the first go round I got into remission by taking bactrim (a sulfa drug) for a very looong time)
It's always a little concerning when only 1 or 2 people are studying it- (Amy Yasko and those on the MTHFR board). And most of the supps are sold by Dr Yasko.
I know many parents of autistic kids have followed the protocol-and nothing changed.
Posts: 1276 | From maryland | Registered: Jan 2009
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I have been taking the B vitamins for a long time -- have MTHFR 1298C -- haven't noticed a difference. I wonder about this also.
Posts: 3528 | From US | Registered: Apr 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
We have been through a lot of autism protocols with my daughter.
Yasko, while wickedly brilliant in her own right, some of her papers have been very enlightening along our path, like excessive glutamate in the brain, etc.
does sell an extremely expensive (VERY) supplement line, detailed heavy years long path- also, minimal results heeded,
except in the instances of severely affected no speech children, after MB12 shots some language has ensued, in some cases.
What is perplexing to me: nailing down 200 mg folate a day, 200 mg P5P (B6) exactly 1,000 MB12, or whatever you get tailored for-
EXCEPT: what if you eat a piece a bread that day? or a bowl of fortified rice? doesn't that throw the whole exact balance out of whack?
I understand the imperative of getting the body to raise it's glutathione levels- often almost always too low in infection driven people.
My daughter has double A1298c- her highly regarded autism Dr. at the time didn't think MTHFR protocol was necessary to go further into-
Just from what I've gathered, perhaps the C677T have more of an issue....
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Is there anyone here who really HAS been helped by methylation supplements then?
Posts: 1647 | From UK | Registered: Nov 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
My Brother and I both have seen improvements with methylation supplements.
Me: Sulfite sensitivity reactions for me are systemic and severe (anaphylactoid), but with Methyl-B12, Molybdenum and an antihistamine, I can avoid an Epi Pen shot and a trip to the ER.
My Brother says his sleep is better on the methylfolate and B12. That's an accomplishment, cuz he has had severe sleep problems for a long, long time (he does not have Lyme).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
My husband has the 677 mutation. He has noticed he is detoxifying better since he started supplements.
It is a balancing act, as he is still trying to treat the Lyme & Babs while at the same time eliminate the excess toxins. His mutation is the one where they don't detoxify very well.
He was beginning to feel more and more toxic with Lyme & co treatment and had to back down on abx. He's only doing herbals at this point.
We haven't seen dramatic results yet, but he is doing better than he was before he started MTHFR supplements.
Posts: 2251 | From USA | Registered: Aug 2011
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posted
Excellent article thank you for the post. I for one am implementing the MTHFR protocol after testing an found homogeneous for defect. I have always thought all along that there was some kind of genetic link because my sister, mother, and I have not responded very well to years of treatment with some of the top doctors in the country. I have also seen so many similarities of having taking additional Folic acid in supplements and felt absolutely crappy. Feel toxic after rounds and rounds of detox products still. Is this the answer to wellness?? I believe every little piece of the puzzle you can fine tune in your health may lead to a better outcome for treatment. Still treating fungal, metals, viruses,lyme, bab, you name it I have done it or still doing it. I will keep you all posted on progress....better to have hope than not.
Posts: 24 | From Maine | Registered: Jun 2013
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Bumping this up for anyone who has not seen it yet.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Anyone with one copy of A1298C, do you have issues tolerating treatment, supplements etc.?
I have heard that Folate is not needed in large doses with this mutation.
Our daughter has this mutation and seems to have issues treating and detoxing.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yes. I have one copy of the A1298C MTHFR mutation and have many, many supplement, herb, food, drug, and environmental intolerances/allergies/sensitivities.
But I also have a double CBS mutation, and that I am sure is at least partially responsible for some of my sensitivity issues - especially sulfite sensitivity.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Jane2904
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posted
Interesting Razzle.
How did you find out about the CBS mutation?
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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WPinVA
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posted
thank you so, so much for sharing this! I learned some really valuable information.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
I have no financial connections with anything listed in or linked to from within this post.
The test results from Dr. Yasko's tests showed me I had a double mutation for one of the CBS SNP's. Dr. Roberts' site (above) helped me understand more about what that meant.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Jane2904
Frequent Contributor (1K+ posts)
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posted
Razzle, thank you for the info.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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quote:Originally posted by CD57: I have been taking the B vitamins for a long time -- have MTHFR 1298C -- haven't noticed a difference. I wonder about this also.
I have the same genetic mutation. I have been taking Vitamin B-12 2,000mg twice daily for at least two years. It is a water soluble vitamin and your body will eliminate in your urine whatever extra dosages it doesn't need.
I'm not sure this mutation means a durn thing for me but my physician emailed that she wants to meet to discuss the lab results.
I certainly want to hear what she says. I hope she doesn't want to add more medications as I'm getting quite a list going.
My teachings for the day: the Vitamins to watch out for are: A, D, E, and K.
These are fat soluble so they are stored in your body and extra dosages are not immediately eliminated so it is much, much easier to take too much of these four vitamins.
Take care all, TheWino
-------------------- Wrinkles only go where the smiles have been --J. Buffett
All of my replies should not be taken as medical advice as they are my opinions only and I am not a physician. Posts: 55 | From Florida | Registered: Oct 2012
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