Razzle
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posted
Good link. Here's another one that explains some more about the Methylation Cycle and other genes that may also be variants that affect the ability of the person to detox things effectively (the methylation cycle is a major detox pathway).
posted
Jane, Are you eating sulfur, sulfite free too? Just curious.
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Jane2904
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posted
Daughter seems to have so many issues, tolerance wise.
She eats mostly veggies, fruit and chicken... a little beef.
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karenl
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I cannot tolerate methyl B12 but hydroxy B12 is great for me.
I think B6 makes me tired and I just started deplin on low dose. Will see.
In the article is we cannot take nitic oxide and Bactrim and SamE. This is also my experience.
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posted
I have this gene also, actually 2 copies of it, and my doctor recommends folic acid.
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Hambone
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I have a question.
I have lab orders to be tested for MTHFR gene mutations.
I had a homocysteine test a while back that was normal.
But,
I also had a Folic Acid test and that was very very high.
My doc said it was because I eat too many fortified foods ( I never even told him what I eat ).
Is it possible that I could still have this gene mutation if my homocysteine was normal?
I'm wondering if this is what is causing my high Folic Acid. I'm not converting it to the one my body uses ( which makes me deficient in the one I need).
I do horrible with Bactrim DS. I can NEVER get to a whole pill without feeling completely drugged and toxic.
I also have a terrible time tolerating vitamins, which was not the case before getting sick with Lyme.
Hmmmmmmmmmmmmmm
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Razzle
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quote:Originally posted by Jane2904: Anyone have a problem tolerating the vitamins to treat this defect?
Yes, I do. This is because one has to treat some of the other defects first to be able to tolerate the stuff to treat the MTHFR mutation.
I've got the dreaded CBS upregulation, which means that anything I take to compensate for the MTHFR mutation just shoves more stuff through the already overloaded sulfur pathway.
-------------------- -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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karenl
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posted
Razzle,
did you try deplin, this should work for you?
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Hambone
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posted
What is the best treatment for an A1298C defect ( heterozygous )?
Razzle, how are you treating your defects?
I suspect I have a CBS defect but haven't had that one tested. I do have the above defect, and so far, 1/2 dose of Folapro has given me that revved up electrified "I want out of my skin" feeling Posts: 1142 | From South | Registered: Dec 2010
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karenl
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Hambone, I was told it is not a big problem and most people do not get high homocystein from the 1298 hetero.
I was told to take deplin 7.5 a day - but start very slow over several months - and added multi B sublingual drops. Also on Hyd. B shots.
Maybe you started on 1/2 dose and you should take it only every second day. Also I think you need deplin.
I have more energy and no side effects at all, so probably try my treatment.
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Hambone
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quote:Originally posted by karenl: Hambone, I was told it is not a big problem and most people do not get high homocystein from the 1298 hetero.
I was told to take deplin 7.5 a day - but start very slow over several months - and added multi B sublingual drops. Also on Hyd. B shots.
Maybe you started on 1/2 dose and you should take it only every second day. Also I think you need deplin.
I have more energy and no side effects at all, so probably try my treatment.
Thank you Karen.
You're right, my homocysteine is normal. Low actually.
My folic acid (serum) level is sky high, which makes me wonder if it just doesn't convert to methylfolate.
I have a LOT of symptoms of B vitamin deficency, including a burning tongue. And, I also highly suspect this defect has made me have a problem with lead...which will be tested soon.
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posted
I am not exactly sure what the methylation defect is that hubby has, but for him SAM-e is needed to correct it. He also takes folinic acid and sublingual B12. His homocysteine was never really that elevated (actually in the high range of normal I think)-- but it is much lower than it used to be.
Karen, P5P (pyridoxal 5 phosphate) -- the active form of B6 is actually used to increase serotonin and improve sleep.
Bea Seibert
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posted
I could not afford the Methylation tests but my Md tested me for Homocystine and it was very high.
So he said I have a methlation problem.
He put me on Ortho Molecular Cardio B and now my levels r ok. the product has B6 (as pyridoxine HC (something,can't make it out on the bottle),Folic acid B 12 Methyl, and Betaine.
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TerryK
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posted
Low homocysteine may indicate a CBS upregulation. You can buy some test strips from the Holistic Heal site which may help you determine if this is a possibility. Check the archives here at lymenet for more info about what to buy.
I would not take deplin. It is very high dose when some ppl cannot even tolerate the detox reaction with a fraction of the folic acid in deplin. Metagenics folapro at 1/2 tablet or less to start with and add the other supplements that are recommended for your particular mutations. You can find them listed on Dr. Yasko's site: http://www.ch3nutrigenomics.com/phpBB2/index.php?sid=6ddb9f1180ebc6eeaebc66541c1d3f04Posts: 6286 | From Oregon | Registered: Jan 2006
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karenl
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Bea,you think the p5p would be better than just B6? Do I have to order it at a special pharmacy - you know which one I mean. As I tolerate the deplin, this is ok, but it has titanium dioxide and I would like a better product.
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Amanda
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posted
I saw the initals and thought we were talking about Mother F***ers.
Tee-Hee
Made reading the response about lacking the MF gene, sharing MF info, and how to detox if you have MF quite amusing
Now back to your regularly scheduled program...
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Hambone
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quote:Originally posted by TerryK: Low homocysteine may indicate a CBS upreguglation
I was thinking the same thing, so I took a little bit of molybdenum ( Mo-zyme ), just to see what would happen.
H.o.l.y. C.o.w.
I was wired and feeling electrocuted for 2 days.
Do you think this reaction points to CBS issues?
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TerryK
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Sounds like you may be suffering with symptoms of excitoxicity. If you have a CBS upregulation you will be low in molybdenum so adding it might cause some reactions because suddenly your body will have what it needs to do it's job. In reality, you probably need more than just moly but I'm sure that got some things moving if you have a sulfur issue.
Molybdenum will stimulate SUOX which is another sulfur processing pathway. Moly will help with conversion of toxic sulfites to less toxic sulfates.
This doctor recommends GABA to help with feelings of exictotoxicity.
posted
I agree with Tincup, my first impression is that mthfr is just an abbreviated term for the expression I use when I find a tick on me haha.
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Hambone
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quote:Originally posted by TerryK: Sounds like you may be suffering with symptoms of excitoxicity. If you have a CBS upregulation you will be low in molybdenum so adding it might cause some reactions because suddenly your body will have what it needs to do it's job. In reality, you probably need more than just moly but I'm sure that got some things moving if you have a sulfur issue.
Molybdenum will stimulate SUOX which is another sulfur processing pathway. Moly will help with conversion of toxic sulfites to less toxic sulfates.
This doctor recommends GABA to help with feelings of exictotoxicity.
I would get the strips as a way to gather more information. Reading the heartfixer site is a good place to get info. So is Yasko's site.
Terry
Thanks Terry
I've been reading all things MTHFR and Yasko's site for 2 weeks and my brain is fried.
I started with 1/4 of Folapro. Today I've noticed a metallic taste in my mouth and teeth all day. Do you suppose it's moving/releasing/detoxing metals already at that low of a dose?
( I've strongly suspected I have a lead issue. A doctor and an ART practitioner both told me they suspect lead, and I can't hang onto iron for anything. )
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Razzle
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I have not tried Deplin.
Didn't realize the high serum folic acid could be from these genetic variants...good to know. My folic acid is always high.
I am taking magnesium, methyl-B12 (shots; I don't absorb B12 orally), molybdenum, and GABA for methylation issues. I can't handle the ingredients in Dr. Yasko's formulas (sulfite issues and/or allergy/intolerance issues), and so my doctor is currently attempting to find me some alternative products that I can maybe try.
I too have the A1298C (hetero), but can't do the fix for that without dealing with the CBS variant first because the fix requires things that give me major reactions.
-------------------- -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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quote:Originally posted by FYRECRACKER: Ha! Amanda, I was thinking the same thing when I scrolled down and saw this thread.
Thought someone was having a bad day!
Now MTHFR is on my list of research to do.
You guys have surprisingly dirty minds. When I first saw MTHFR, I thought it stood for "Monday-Thursday-Friday"!
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TerryK
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Ham, Yes, I think it's possible that you are mobilizing heavy metals as many do once they start lifting the methylation blocks. I'd get a heavy metal binder on board. Look at Yasko's site for that or look in the archives for various options. GIGI has written a lot about heavy metal binders. My doctor has had me use microsilica. Expensive but works well for me.
Razzle - if you have one of the sulfur issues (CBS or SUOX), supplements you take to deal with MTHFR will creatae more toxins. You will need to deal with the sulfur issues and get them under control first.
The molybdenum will help but you may need to do more. I use yucca and when I feel like my sulfur levels are out of control I use nutrimedix Sparga to drain it off. It helps me a lot. I also can't go wild with eating meat because that brings on the sulfur issues.
For some, this is a piece of the chronic lyme picture and really needs to be dealt with in order to move forward.
Terry I'm not a doctor
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TerryK
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Could also mean that you have a problem with heavy metals. I've posted a study several times that shows that mice with subtoxic levels of mercury have more trouble getting rid of a borrelia infection.
May also make it harder to get rid of parasitic infections and you may have a heavier burden of other toxins which would make adding more toxins via treatment harder to deal with. This all depends of which methlyation problems you have.
Terry I'm not a doctor
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Razzle
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quote:Originally posted by TerryK: Razzle - if you have one of the sulfur issues (CBS or SUOX), supplements you take to deal with MTHFR will creatae more toxins. You will need to deal with the sulfur issues and get them under control first.
The molybdenum will help but you may need to do more. I use yucca and when I feel like my sulfur levels are out of control I use nutrimedix Sparga to drain it off. It helps me a lot. I also can't go wild with eating meat because that brings on the sulfur issues.
For some, this is a piece of the chronic lyme picture and really needs to be dealt with in order to move forward.
Yes, I'm aware that treating MTHFR without first dealing with the CBS variant is a problem - that's why I'm not taking the stuff for MTHFR right now.
I'm not able to avoid sulfites & sulfur as much as I'd like to - it's everywhere (air pollution, every food, tap water, filtered water, etc. etc. etc.) -- I know because I'm almost constantly reacting... This is why I'm taking 1000mcg Molybdenum daily and getting B12 shots frequently. But it's not enough. I know I need to do more of the Yasko stuff, but can't use her products because of allergies and sensitivities to ingredients in them.
I've been a vegetarian since 1988 - meat (and fish) doesn't agree with me (and I test allergic to some meats and fish, also). I also avoid eggs (another allergy, though I suspect I'm reacting to the sulfur because when I eat eggs, I get the most horrible sulfurous nasty stuff coming up into my mouth - blech!!!).
My diet is very, very limited because of the sulfite/sulfur issue, gluten sensitivity, and also a bunch of other food allergies & intolerances.
Where do you get yucca from? I've tried finding plain yucca with no fillers/binders/etc. with no luck...and I also don't know how much to use at a time...so any info you have on this would be appreciated. And I've already tried to get help from the Yasko support group, but nobody was able to answer my questions.
Sparga is out of the question for me - I can't tolerate alcohol-based tinctures at all, and asparagus also gives me sulfur reactions.
-------------------- -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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TerryK
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posted
I buy the Now brand of yucca which is available at a lot of on-line health stores. Besides yucca it contains the following.
Sounds like you've already looked at Yasko's CBS+ protocol but if not I would take a look at that and try to implement as much of her program as possible. Also look at the heartfixer site for info on sulfur issues.
Wishing you the best of luck.
Terry I'm not a doctor
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posted
What are the symptoms of the sulphur issues? Thanks.
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Razzle
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RC1,
The symptoms I get vary widely depending on how much sulfite/sulfur is in the food, and how much of the food I eat over a 48 hour period of time (because exposure is cumulative). Symptoms may be anything from mild reflux/heartburn to nausea to Asthma to flushing to full-blown anaphylaxis (nausea/vomiting, diarrhea, swelling in the mouth/throat, skin rash, shaking chills, shortness of breath, etc.). Other symptoms I've had from ingesting sulfites/sulfur include headaches, muscle pain, joint pain, dehydration/thirst, esophagus spasms, shaking chills, etc. I also react to car exhaust (sulfur dioxide = sulfite) with fatigue/exhaustion, nausea & weakness, and to volcanic ash (because it's high in sulfur) with hives.
Sulfates (sodium laurel sulfate, etc.) in skin products/shampoos usually causes my skin to itch severely, and in shampoos, also causes intensely dry itchy scalp with lots of dandriff.
I also get a rash from sulfasalazine and also from over-the-counter antibiotic ointments (neosporin), and my doctor told me I was allergic to sulfa drugs. This is not the same thing as sulfite sensitivity or sulfur intolerance - being allergic/sensitive to one form of sulfur (such as sulfites) does not mean one will react to all forms of sulfur.
-------------------- -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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Razzle
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TerryK,
Thanks. I found a site that sells bulk yucca root powder (mountainroseherbs.com - I have no financial connections with this website), so I've ordered some to try.
Yes, I've looked at the Yasko CBS protocol - that's how I found out what she recommends for this variant and how I know that I can't use her supplements. I've given my doctor a list of the ingredients in each of the recommended supplements, and told him which products I can & can't take & why. So he's going to help me get something going with this. It's not going to be easy because most B vitamins (other than B12) cause me to become a jittery shaking nervous wreck & can't sleep for days. So I know I will have to proceed very slowly...
Thanks & take care,
-------------------- -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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AZURE WISH
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posted
i react bad to all forms of sulphur (and a ton of other stuff)
im very sick and pain/lightheadness blah blah....
cant focus that great so is sulphur issues usually a cbs upregulation problem...if so what does that stand for and how do you test treat it... if not anyone know which defect it is?
Sulfur issues can be from a variety of causes. CBS upregulation, SUOX (sulfite oxidase) insufficiency, nutritional deficiency of Molybdenum (or others: Magnesium, Zinc, Iron, Vitamin B12, Vitamin E, etc.), too much B vitamins without the supporting minerals (molybdenum, magnesium, zinc, iron), etc.
The test for the CBS genomic variant that causes CBS upregulation is included in a panel of nutrigenomic SNP's available for purchase through Dr. Yasko's site (I have no financial connections with this website, Dr. Yasko or her lab):
posted
I have this gene too, are you being treated by specialists (genetic) or by your family doctor? Or LLMD.
My LLMD is the one who tested me for the gene and wrote a rx for metanx. However, he didn't share all the information in that article that was posted by tincup and razzle.
Also, the article says not to use bactrim or septra ds and he just added that to my treatment plan yesterday.
I guess I will have to call him tomorrow and ask him specifically about bactrim and this mtrfr gene.
The other thing that concerns me is if my body is actually able to detox the toxins from all the meds that I'm on or if the actual inability to detox is causing some of my symptoms.
I noticed after I used zeolite and detoxamin for high lead and gadlominum(sp?) levels that my back, spinal cord, neck are killing me. Not sure why all the sudden this is a issue when I wasn't feeling too bad the past month or so.
Razzle
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posted
PM me with your email address and I'll email you a list of foods with sulfur - it's too lengthy to post here...
I'm working with my doctor to find treatments that will work for me because of all my other sensitivities/allergies & intolerances. To follow Dr. Yasko's protocol to the letter, a physician who understands the nuances of treating nutrigenomic variants is a good idea.
-------------------- -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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TerryK
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RC1- the symptoms I get with too much sulfur are burning muscles, burning irritated eyes, headache, fatigue, out of sorts/cranky and achey. Inflammation seems to be related sometimes. There may be more symptoms that I am just not recognizing as being part of the sulfur issue.
Terry
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posted
Thanks Terry, I had the MTHFR test and I have one bad pathway, not sure which one. I dont think I react to sulphur.
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AZURE WISH
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quote:Originally posted by Razzle: Azure,
Sulfur issues can be from a variety of causes. too much B vitamins without the supporting minerals (molybdenum, magnesium, zinc, iron), etc.
are u kidding me!!!!!! i have been taking those 5 hour energy energy drinkS daily. like 2 a day for years. they are wicked high in B's. I was told this was ok. i started them because they help with pain and I am trying to wean off now despite the sky high pain level.
do you happen to know any articles describing this to much b's not enough supporting minerals?
I will talk to my dr about all of itbut especailly my history of crazy high b intake.
Tammy N.
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What kind of doctor knows most about this and how to treat? Hematologist?
Also, if anyone knows of a knowledgeable doc in NJ, please share:)
Thanks.
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Razzle
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No, not a Hematologist. Try an Autism specialist (DAN! doctors) or Naturopathic or Integrative Physician.
-------------------- -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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Razzle
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Azure,
Most of what I know about this stuff comes from Dr. Yasko's material included with the test kit and also the info on http://www.heartfixer.com/AMRI-Nutrigenomics.htm along with a littl bit of brainwork (what little I can do, LOL) and experience with my own situation.
Here's how I came to the conclusion that the minerals are needed:
B vitamins promote the function of the methylation cycle. But the enzymes in the methylation cycle use certain specific minerals in the process of performing their function. If these minerals are not replaced, the enzymes cannot function the way they are intended to function.
So basically, it is great to stimulate the methylation cycle (with B Vitamins), but all the necessary ingredients (minerals) must be present or the stimulation itself will cause problems.
-------------------- -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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Hambone
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quote:Originally posted by RC1: Thanks Terry, I had the MTHFR test and I have one bad pathway, not sure which one. I dont think I react to sulphur.
A1298C ??????
That's the one I have. I am responding in a good way to a little bit of methylfolate.
I'm kind of disappointed in my doctor, though, because he said this one was no big deal and needs no treatment. But I didn't listen to him and experimented on my own.
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posted
Hambone, thanks, I found my test and it's C677T it's heterozygous.
My doctor didn't offer any treatment for this either, he just said that is not good. That I am not a good detoxer.
I didn't know until this thread that these things are treatable. Well I don't know if mine is.
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Razzle
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quote:Originally posted by RC1: Hambone, thanks, I found my test and it's C677T it's heterozygous.
My doctor didn't offer any treatment for this either, he just said that is not good. That I am not a good detoxer.
I didn't know until this thread that these things are treatable. Well I don't know if mine is.
posted
Razzle, thanks so much! Wow! Something that can be fixed easily! I just bought some Folapro.
Interesting.. my folic acid test was ridiculously high, I guess I wasn't converting it.
Thanks again!
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Jane2904
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Hambone, Dr. gave us Actifolate for Daughter's defect. She as the same as you. one copy.
How much are you taking? Hope the Actifolate will be okay?
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Hambone
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quote:Originally posted by Jane2904: Hambone, Dr. gave us Actifolate for Daughter's defect. She as the same as you. one copy.
How much are you taking? Hope the Actifolate will be okay?
1/4 of a Folapro for a little over a week. I just bumped it to 1/2.
The first two nights I had very restless sleep and felt like metal in my mouth.
MUCH better now and I can tell it is helping.
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CherylSue
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What an odd acronym. I thought someone was getting obscene over lyme disease.
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TerryK
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Cheryl - funny!
I have mutations one copy of each MTHFR C677T and MTHFR A1298C + the CBS upregulation and a number of others. What I take for the 2 MTHFR mutations is 1 folapro (worked my way up over a few year period) and 1/2 actifolate. My LLMD suggested that I had actifolate in order to get other types of folate besides the active form. It does have the active form too but folapro is what was originally recommended by Dr. Yasko.
I also take BH4. Heartfixer explains why BH4 is useful. It tends to be low with several of these mutations. It detoxifies ammonia and helps with parasitic infections etc...
Jane2904
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Thanks for the info Hambone and Terry.
Glad to hear it is helping Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Hambone
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quote:Originally posted by TerryK: I also take BH4. Heartfixer explains why BH4 is useful. It tends to be low with several of these mutations. It detoxifies ammonia and helps with parasitic infections etc...
Terry
Terry, where do you buy your BH4?
Posts: 1142 | From South | Registered: Dec 2010
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TerryK
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