posted
Hi, Does anyone else have this? I have 2 of the mutations, found out after a miscarriage before i wanted to try to get pregnant again.
I need more info. on this to REALLY understand this! I was basically told at the time because of that my body would not absorb folic acid correctly therefore I had to take folgard (folcaps) to keep homocysteine level low (which it was low) and during a pregnancy to prevent neural tube defects.
Well the reason I am asking is because back in December I had restarted taking folcaps after being off them since I gave birth to my son almost 5 years ago. All these neurogological symptoms started after this. I was recently helped out by another person on lymenet that clued me in that maybe the folate could be toxic to me (so much of it). I went off it and most of the neurological symptoms have resolved (feel 80% better in only a couple of weeks since stopping the vitamins). Granted, it is not the only thing I have done differently.
I also went gluten free (was gluten free for 2 years 2003-2005 and felt great), started using colloidal silver, and am using some rife therapy (so i can't be certain it was stopping the prenatals/folate- I was getting 6 mg total of folate a day!
Anyway, I need to know if I could take less folate with this genetic mutation for my health and the health of baby (i am going to try to get pregnant again in the future). i am afraid to start taking it again for fear of all of the neurological symptoms i was having getting intense again.
So, I need help with this- I am pretty sure the OBGYN knows nothing and it was a Reproductive Endocrinologist who tested me for it (after I asked her only because i read it could contribute to miscarriages).
I know the genetic mutations could cause the body not to absorb folate correctly, could result in high homocysteine levels resulting in possible stroke or heart problems, and could cause miscarriages or neural tube defects during pregnancy. that's all i know!
The reason I am asking on here is because I remember it coming up before in relation to lyme and some doctors feeling that it could be a factor.....so maybe some lyme doctors have started testing for it. I did not read this on lymenet though, it was another lyme site and it was awhile ago.
thanks, maureen
Posts: 871 | From NJ | Registered: Mar 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Try this...
And if you need more information I am in touch with a LLMD working with this stuff. Just let me know.
posted
thanks Tincup, I sent you an email
Posts: 871 | From NJ | Registered: Mar 2007
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ping
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posted
Hi Maureen - How disheartening; to twitch or not to twitch, that is the neurological question! Not making fun of you, just my way of registering despair when sympathizing...
In addition to whatever Tincup tells you, please lose the colloidal silver before and during pregnancy (preferably afterward to, as in never again).
Good luck.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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sparkle7
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I haven't seen her or know anyone who has but she does deal with these kinds of issues.
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Hoosiers51
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posted
What exactly was in the folate supplement you stopped taking?
Maybe there is another form of it that won't bother you?
Or, maybe you could just eat a lot of leafy greens during pregnancy, so you would be getting the most available forms from food, and not an over-abundance?
Think about it....back in the day, women didn't take prenatal vitamins, they just ate. If you could get some farm-fresh produce from good sources (good soil), that might be getting you just enough folate, even with the mutation.
Because I think that 10-20% of Caucasians have that mutation. So you obviously aren't alone, and there are probably a lot of people that don't know they had it. So if the supps bother you, try foods?
I am NOT a doctor...of course I could be wrong....just speculating here.
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Hoosiers51
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posted
Just looked at Tincup's link...
notice it says those people can't use folates added to enriched foods or what's in (some) supplements...so perhaps leafy greens are the way to go.
I think I've read that you actually get more nutrition from them when they are cooked or wilted (though not overcooked of course).
Okay, I just *finished* reading the link, and now it's seeming like maybe you can't even use what's in leafy greens? I dunno, now I'm confusing myself.
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TerryK
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posted
Hoosiers - on the surface of it, green leafys seem reasonable but the problem is that those of us with this mutation cannot convert the dietary form of folate to the active form. Our body does not effectively use dietary folate. I'm sure we use some of it, just not enough. This link may help explain it.
http://www.drdebe.com/l5mthf.html "L-5-methyltetrahydrofolate (L-5-MTHF) is the metabolically active form of folic acid. The folic acid found in food has to be cleaved (digested) from protein carriers in order to be absorbed. This process is inefficient in some individuals. Once absorbed, dietary (and supplemental) folic acid has to then undergo several biochemical conversions in the body to become L-5-MTHF. Roughly one in three Americans have genetically inefficient enzymes that help create L-5-MTHF."
It is not that the high doses of the active form of folate substance itself is toxic, it's that opening the methylation cycle can start the release of toxins that the person was not able to get rid of before because they did not have some of the nutrients needed.
It would probably be good to take the 5 nutrients in the simplified protocol if you want to be sure to open the cycle appropriately.
You can find info on that in some of the links that I sent you previously.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Hoosiers- yes, I was thinking the same way as you originally about just eating more leafy greens constantly.... but then i read about the conversion problem too since i have both mutations. thanks for all the thinking and reading about it though! i appreciate it! it is so confusing, i agree.
Ping- I was not going to take CS during a pregnancy at all. was going to stop it prior to pregnancy- but why do you suggest stopping it forever? you can pm me if you can, since i know it is off topic of the post. just wanted your thoughts on it.
Terry- I did read about that form of folate. I am assuming (although I could be assuming wrong) that this is the same form of folate in folcaps- do you know?
Also, I did finally get on the one site, but I have to tell you it was all way over my head! what are the 5 nutrients along with the folate that you mention?
Also, that folate you mention that you take- it seems like you need a healthcare provider to order it for you? I doubt that would happen for me since I was already prescribed the folcaps. They are such tiny pills too, and with 5 mg. of folate, not sure what breaking them in half would do for me.
I really, really need to find out what I need to take- how much of this folate i really need for a pregnancy. Seems like the 800 mcg would be enough if I am absorbing it, since that is around the amount in the prenatal vitamins anyway that women without this mutation are taking. I guess what i am thinking is that if the full 800 mcg. of the folate from metagenetics is absorbed for someone with these 2 mutations, that would probably be the same as someone without these mutations taking folic acid- does that seem like correct thinking?
if that is the case, maybe i could try 800 mcg and split it, taking it 2x a day, not take the prenatal vitamin since that folic acid would compete with the other form of folate and maybe cause my body to dump toxins. however, i won't be able to find a multivitamin without folic acid- but maybe just take some individual things (like iron) needed for pregnancy. the question to me is why is 5 mg. of folate in this folgard pill..... seems so overkill.
any thoughts? thanks, Maureen
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sparkle7
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posted
It's a complex subject. I'm going to study it further for my own issues. There is a simplified protocol (as Terry mentioned) & it's used for autism & CFS (as per Dr. Y).
Here's a link:
The Simplified Glutathione Depletion-Meythlation Cycle Block Treatment Approach.
I'm not sure it's exactly the same treatment as for the MTHFR genetic mutation but it sounds similar. I think I may have this but I've been busy putting out other fires - so to speak.
There's a bunch of links if you google - simplified methylation protocol
I don't know if this is exactly what you are looking for since it's a complicated subject but I hope it helps.
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TerryK
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posted
You can order the metagenics folapro without a doctor. Can you send a link to the product you take? The only one I can find looks like it is 2.2mg and they only say folic acid. They don't give the chemical structure. It may take some digging to find the package insert.
Maureen wrote: i won't be able to find a multivitamin without folic acid- but maybe just take some individual things (like iron) needed for pregnancy. the question to me is why is 5 mg. of folate in this folgard pill..... seems so overkill.
Yes, that's what I do in order to avoid other forms of folic acid that compete with the active form. I wonder the same about the massive doses. The only thing I can think of is that it fits along with the brute force mentality of allopathic medicine.
I would still try to contact Dr. Yasko's office and see if she might be willing to talk to you (that is if she knows anything about it). I would also write a message to all 3 groups that I sent you the links for and see if anyone has any information for you.
Have you searched the internet for studies that talk about how much was given to avoid neural tube defects? That might yield some results.
Here is the simplified protocol
April 18, 2009
SIMPLIFIED TREATMENT APPROACH FOR LIFTING THE METHYLATION CYCLE BLOCK IN CHRONIC FATIGUE SYNDROME (Revised)
(Extracted from the full treatment program developed by Amy Yasko, Ph.D., N.D. which is used primarily in treating autism [1])
SUPPLEMENTS
1. FolaPro [2]: 1/4 tablet (200mcg) daily 2. Actifolate [3]: 1/4 tablet daily 3. General Vitamin Neurological Health Formula [4]: start with 1/4 tablet and work up dosage as tolerated to 2 tablets daily 4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily 5. Activated B12 Guard [6]: 1 sublingual lozenge daily
All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources. The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food. These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food. GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages. Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.
[1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49. [2] FolaPro is a registered trademark of Metagenics, Inc. [3] Actifolate is a registered trademark of Metagenics, Inc. [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC. [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. [6] Activated B12 Guard is a registered trademark of Perque LLC.
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Ok..I'm a newbie (with diagnosis and discussion forums). Can someone shed some light on the possible relationship between Lyme and MTHFR gene mutation? I also can't assimilate any of the B vitamins.
What's the story with this? I had two pulmonary emboli discovered at the beginning of a 2 month hospital stay. (as a result of the gene mutation)
I'd love to understand this better.
-------------------- Blessings to you! Posts: 141 | From Southern California | Registered: Mar 2010
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TerryK
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posted
It's more than just the MTHFR mutations, several more are involved.
posted
i ordered all things for the simplified 5- wondering how do you cut the pills in 1/4- actually how do you cut them at all- I couldn't do it! is there a pill cutter or something you could buy?
also, wondering why methyl b12 and b6 aren't part of it. i really thought these worked together with the folate? does anyone know why they would not be part of the plan? would it hurt to add them to the plan?
Posts: 871 | From NJ | Registered: Mar 2007
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posted
also, anyone who is addressing this are you using binders? i have some cholestepure, but that's all. what are others using in the way of binders?
thanks!
Posts: 871 | From NJ | Registered: Mar 2007
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posted
I need to read up more on this. Thanks for all the links everyone. Hubby just has one genetic mutation and what he has been taking is folinic acid -- 6 x 800 mcg daily. He also takes 2 x 100 mg B complex and 50 mg p-5-p and 2 x 2000 mcg sublingual B12.
The folinic acid is supposed to be activated folic acid, just not sure it is the same form that others are taking.
Bea Seibert
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
Hey,
I was just rereading your original post....
Have you tried asking the Reproductive Endocrinologist who tested you?
I'm sure he/she must know what to do or what to think if someone comes up abnormal on that testing, or what's the point of running the test?
If you did ask already, I'd be interested to hear what that doctor said, since I'll be trying to get pregnant within the next couple years too, and I'm pretty darn sure I have at least one of those mutations, because I can never seem to get enough B vitamins, so I'm now supplementing for MTHFR without even doing the testing.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I've got it, too- homozygous. TerryK is really a wealth of info on methylation pathway issues.
My LLMD testing me for it after I got clots from a PICC line.
You might want to consider getting testing for some of the other methylation and/or transulfuration pathway SNP's. Amy Yakso's website is a great start. The tests done through her are pretty pricey (in my spectrum anyway), BUT, if your doc agrees, maybe you could get one or two of them covered by insurance. I'm not sure.
Edited to add: my doc prescribed Cerefolin at the time. I also do methyl B-12 shots a couple of times/week.
[ 04-01-2010, 07:38 PM: Message edited by: Dawn in VA ]
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Dawn in VA- Yes, TerryK has given me great info.! I don't really feel like getting the testing done through Yasko, because then there are a million supplements involved and I would rather not follow that protocol. That's why I am just going to try the simplified 5, and possibly add the b6 and methyl b12.
Hoosiers- I haven't seen that doctor since 2004 when I had the testing done.
I think that as far as pregnancy is concerned, there are prenatals with methyl folate in it that you take. My friend also has the mutations (but not lyme) and she took baby aspirin too, along with extra folic acid. There seems to be a lot more info. about it though then I was pregnant with my son and taking all that folic acid (and probably not really absorbing right anyway). So, I am going to prepare before a pregnancy with methylfolate and then when my body is ready for a pregnancy- will take right prenatals that have methylfolate in it.
When I get pregnant I will also be on baby aspirin and heparin, but not specifically for the MTHFR mutations, more for antiphospholipid antibodies that I have "sticky blood".
Posts: 871 | From NJ | Registered: Mar 2007
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posted
i did read that methyl b12 can be rough for some people, so that is why it is not included in the simplified 5 protocol.
just not sure why b6 is not included though in the protocol.
and if the methyl folate is the only folate that works with these mutations than why is it that methyl b12 is not what should be taken, even in small doses?
is the other b12 recommended getting absorbed correctly?
Posts: 871 | From NJ | Registered: Mar 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
How about this product?
RM-10� ULTRA
Ultimate Immune Health Formula
The ultimate immune health formula, containing organic mushrooms and other specially selected nutrients to provide broad spectrum immune support via multiple pathways: immune cell function support, immune cell metabolism support, methylation support and antioxidant support*
Contains a proprietary blend of organically-grown, tonic mushrooms that have been carefully selected and cultivated to maintain their genetic integrity (mushrooms have been used all over the world for many centuries for their health benefits)
Contains betaine, folic acid, vitamin B12 and naturally occurring methionine to support optimal DNA methylation, an important factor in regulating normal cell identity and growth
Contains L-theanine, an amino acid found in green tea, to support healthy gamma delta T cell presence in the body, important for proper immune function and host defense*
Contains selenium which some scientific evidence suggests may reduce the risk of certain forms of cancer (although the FDA has determined this evidence to be limited and not conclusive) Selenium helps maintain optimal glutathione production, the body's own antioxidant, and an important factor in immune health*
Contains lycopene to help the body fight free radicals and support the healthy function of multiple cells and organs, including the prostate*
Select ingredients are produced through the Garden of Life proprietary Poten-Zyme� process to make nutrients more available to the body*
Delivered via UltraZorbe� 100% vegetarian capsules to ensure potency, eliminate the need for fillers and binders, and provide quick nutrient release through faster dissolution into the body (independent study suggests UltraZorbe capsules dissolve more completely than other vegetarian capsules)
Packaged in the state of the art, BioProtect� Packaging System which is superior as an oxygen and moisture barrier and sets an industry standard for protecting delicate ingredient integrity and effectiveness throughout shelf life
----
I have been taking it but I don't know if it's doing anything. It may take some time to correct these issues. Or - I might not have this genetic problem...?
I'm taking other things & I got a bad cold - so, it may be hard for me to tell right now.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Dawn in VA
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posted
Mareen, I'm taking the methyl B-12 shots per LLMD's orders. Not every day though, only a couple of times/week (I was doing them every day for about a year prior).
If you have other methylation issues, methylcobalamin may (should?) not be first on your list. Perhaps go with the other "simplified" protocol and then maybe add them in 3 months down the road if you find you're able to feel better and detox better with said simplified protocol.
Regarding the other type of B-12, I think it's just docs' difference of opinions and what other mutations their patients might have. Some say to be careful of the methylcobalamin in particular if your have amalgam fillings b/c the methyl donor can attach to the mercury and allow it to cross the BBB.
I honestly don't have a straight answer on that one, sorry.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I was thinking about this today... It seems that supplement companies may be coming out with products to address this issue. Is this wise?
It seems that if "I" took a product like the mushroom one I posted above - then took a multi vitamin - I could screw the protocol up...? There may be overlaps in the type of folic acid or B12, etc.
Also, is there any proof that this actually would work to adjust the genetics of the body?
This is a new area of study - epigenetics. We really don't know if there's a one size fits all answer... We don't know very much about it in general. We're probably just at the tip of the iceberg.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Dawn in VA
Frequent Contributor (1K+ posts)
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posted
Sparkle, it's not meant to address/correct one's genetics/DNA. I have no idea how that would currently be possible. Instead, the protocols are aimed at getting around the methylation cycle deficiencies (mutations of SNP's) that some of us have.
EX: if you have the MTHFR mutation, you can't metabolize folic acid (and vitamin B9) due to an ezyme deficiency which would normally convert 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate, which, in turn, facilitates conversion to the amino acid homocysteine to another amino acid, methionine. (Everything seems to come back to some part of the Krebs cycle. Oh yeah, baby, exciting stuff
Many of the Yasko (and others') supplements are geared towards bypassing the missing links in that cycle, like giving the body the end-result form of whatever part(s) of the cycle we can use. Folic acid, for example, commonly found in regular vitamins that, is something we can't convert properly, but the Folapro supp in her regime includes the end product itself.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks Dawn! I guess I'm confused about this because there are alot of methylation reactions in the body. I guess the MTHFR is a specific one.
"Methylation" is not just one specific reaction. There are hundreds of "methylation" reactions in the body. Methylation is simply the adding or removal of the methyl group to a compound or other element.
-----
Some people like Yasko & others think she is a quack (to put it bluntly) - so, it is a difficult subject.
Excerpt - (This mostly deals with the issue of autism.)
Where this MIGHT be helpful would be in picking supplements. So someone may do badly on the high B6 protocol. If that person does badly on TMG or DMG too this may be a clue that they will do poorly on ALL the methylation precursors so they can steer clear of that group in high doses.
And vice versa, if they did really well with one, then they may also do well with others in the group. Of course, they may not see additional benefit if the methylation process is fixed with the first supplement, but it is something that might help a person know why they or their child is consistently doing well or poorly with a group of supplements.
Is there any evidence to support this? Well, I am looking at the ARI data gathered from over 18,500 parent surveys. Let's say Pfeiffer is exactly correct and under-methylators are about 45% of the "autism" population. These are the values for the precursors for methylation:
So if you look at any of the precursors, really, most are around that 45% mark of under-methylators (calcium was a little low, but it is a supporting element). So we have a mark of consistency here.
SAMe, methionine, and B12 were not choices. What this does NOT point out is which came first. Was zinc low for some reason not related to methylation and because it was low, methylation dropped? or are you a genetically low-methylator to begin with and do not utilize the nutrients at hand well?
Or was folic acid the bottle-neck? or magnesium deficiency? Or an injured gut which cannot adequately absorb any of the nutrients? or....
This is how I see it, just as a general guideline that may be helpful, not a cast in stone type of thing.
-----
It would be nice if there were a simple test for this... Is there one or two? I read a bit about the Genova Detoxigenomics (spelling?) test.
Are there others? Seems like we really need some customization about this subject. I don't know if the simplified protocol will help everyone.
I read a bunch of claims that people have posted here about AI... I'm a bit skeptical of that. It would be nice if there was something we could do. Maybe I just have to research it further?
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
Genetic impairment in detoxification ability occurs in the majority of Americans, but the types ofimpairment differ between individuals. This affects/impairs the ability to tolerate drugs and otherchemicals. Researchers Dr. Schnakenberg and others documented that detoxification impairmentis common in people with chemical sensitivity and chemical illness.
(Environmental Health Feb. 10, 2007.) Genetic TestingGenetic (also called genomic) testing is performed in the United States by Genova Diagnostics(laboratory) (800-522-4762), as well as certain other laboratories, e.g. Mayo, etc. Genova hasspecialized testing for chemical illness (Detoxigenomic testing). The results correspond well withwhat I have seen in my own patients.
Genetic testing can show whether a person has inherited specific differences from one or from bothparents. Genova Diagnostics has a broad test panel called a detoxigenomic panel. They alsoprovide the patient with a list of drugs that they will have more difficulty with, and other ways to improve health, for each impaired detoxification pathway.
They only test genetic changes that are both common and treatable. Actually, genetic limitations in detoxification are very common in the general population, perhapsbecause before wide use of chemicals and drugs. These changes did not affect survival.
Because detoxification impairments are common, people in general need far better protection fromunnecessary use of chemicals and drugs.This testing may not be covered by insurance and could lead to insurance discrimination.
However, it only has to be done once in a lifetime.Genetic Changes in Patients with Chemical IllnessI discuss below detoxigenomic test results on all 16 patients tested in my practice: they all had chronic symptoms and effects of various forms of chemical injury.
All 16 consecutively tested chemically ill patients had four or more specific types of detoxification impairment, but theindividual patterns differed sufficiently to make genomic testing clinically useful.
Cytochromes are used for the first detoxifying step for many substances. Fifteen of 16 hadmultiple impairments in cytochrome pathways. However the specific cytochrome(s) (also calledcytochrome P450 system) impaired were not the same. The most commonly affected wascytochrome 1B1 (13 of 16), the second was 2C9 (7 of 16) and third was 1A1 (4 of 16).
Some ofthese cytochromes are also drug detoxification pathways and impair or affect drug dosage and side effects.
Glutathione is a major detoxifying pathway for chemicals, toxic metals and some drugs. Fourteenhad impairment in glutathione conjugation, with the vast majority (11) having homozygous (fromboth parents) impairment in GSTM 1, 4 impaired with GSTP1, two with both and only one havingnormal glutathione function.
SOD (superoxide dismutase) is an essential protective enzyme from ``free radical'' damage. Eleven of 16 tested had impairment in SOD function in ``extracellular'' tissue like blood, lymph, and fluidbetween cells. This allows higher levels of the free radical called superoxide.
Page 2
Genetics and Chemical Illness Page 2 of 32
Superoxide combines with nitric oxide from chemical exposure to form damaging peroxynitrite. This change makes people more susceptible to become chemically sensitive.
Acetylation is another very important pathway of detoxification. Of the 16 patients tested, 15 wereslow acetylators (NAT) for some NAT functions, but 11 were ``fast acetylators'' for otherfunctions.
They can convert some substances to a more toxic form faster than the body can handle.COMT is essential in processing estrogens to a non-cancer substance, thus helping protect womenfrom breast cancer and men from prostrate cancer.
COMT enzyme (catechol-o-methyl transferase) is also needed to normally process (methylation)/adrenalin and also detoxification of various toxins and drugs. COMT was impaired in 12 of 16tested, with total impairment (both parents) in 4.
Folic Acid Impairment Bioactive folic acid (MTHF) is a vital ``methyl donor'' for many body processes, including brainfunction and DNA repair. Some insurers will reimburse testing for the genetic ability to convertfolic acid into the bioactive form (MTHF or methyl tetrahydrofolate).
There are two genes involved: C677T and A1298C. Either can be affected partly (one parent) or completely (bothparents). With significant impairment, that person needs a MTHF supplement (about 1mg daily).
Quest, Genova Diagnostics and some other labs test MTHF genetic changes. SpectraCellLaboratories testing measures whether the amount of bioactive folate is ample.Folic acid (not the MTHF form) has been reported to help reduce effects from exposures to aldehydes.
It can also help to calm the autonomic nervous system, and this approach is beginningto be used clinically.Confidentiality Genova Diagnostics does not allow reimbursement through insurers to avoid the problem ofinsurance discrimination.
We know that such discrimination is illegal, but proving discriminationis difficult. Thus, not running it through the insurer helps prevent discrimination.
We all know that corporations are legally allowed to have trade secrets. This protection is evenextended in certain situations where the trade secret ingredient is a cancer agent or otherwise hazardous substance. We also know that the law does not require the fragrance industry todisclose any of the ingredients of their products even though labs can determine ingredients through specialized testing.
Even physicians are not legally allowed to obtain ``trade secret'' ingredient information on scented products from the manufacturer! It would seem that if corporations are legally permitted to have trade secrets regarding hazardous chemicals, (and since insurance or other discrimination based on genetic differences is illegal), then protecting confidentiality on genetic test results seems medically and ethically reasonable.
Page 3
Genetics and Chemical IllnessPage 3 of 33
Why be tested?
There are many other reasons why individuals may want to know if they have specific genetic changes. For drugs that are involved, they may wish to either avoid the drug or use it at lowerdoses if the detoxification pathway is slower or impaired.
Genova Diagnostics provides a fairly detailed listing of such drugs and lists some other protective measures with the test report to thepatient.The effects of many of these changes can be reduced by ingredients in the neural protocol.
Seewww.chemicalinjury.net under New Treatment for more information about specific ingredients andtheir functions.I also provide additional information to patients about other protective steps that they can take,based upon their specific genetic results.
Because this information is individualized according to the patient circumstances, it is not on this website. Some of the common features apply, but maynot be feasible for all patients.
Do genetics ``cause'' chemical Illness?
No! Detoxification changes are common in the general public. Most chemical illness in patients Isee is occupational in origin. People ``tough it out'' until they are disabled because they need theincome and/or do not know the chemical cause/seriousness until it is too late.
More genetically susceptible may get sick sooner, others later, but most continue working until disabled. The same is true for home contamination: the person is sick and needs housing.
Susceptible people may leave/correct their home sooner, others later, but only if they know the home is making them sick. The answer is LESS TOXINS.
Some impaired detoxification affects the vast majority of people inthe general public: our bodies are not designed for the greatly polluted workplaces and schools.
Chemical Injury without Early Warning Chemically exposed people who do not get early warning symptoms can go on to later develop Lupus, other autoimmune disease, Parkinson's disease, Alzheimers, ALS, chronic fatigue, many other chronic inflammatory and degenerative diseases, increased cancer (especially brain,lymphatic, breast, etc.
Chemicals are a major factor in our growing cancer epidemic. These people did not get or notice early warnings. Both nontoxic/less toxic controls and genomic testing help prevent these diseases.
Summary
My patient data as well as the Environmental Health article of Feb. 10, 2007 both confirm that patients with chemical illness appear likely to have multiple genetic detoxification impairments.
This has helped patients who have been tested to be taken more seriously by theirother treating physicians, family members, etc. In addition, it allows a person who has been tested, when provided proper information, to knowwhat steps to take to improve their health despite genetic challenge
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Yes, I think the whole thing is very complicated. Yasko tests for so much more than just the MTHFR mutations and then she has a protocol based on what your test results show.
Like I mentioned, I just happen to know i have both of the MTHFR mutations (pretty sure both copies of each one, at at least one of the ones- I have to try to find my blood work, but it is from 2004, and I have moved a couple of times, so I have no idea where it is right now). I happened to find out before trying to get pregnant with my son about a year after a miscarriage.
I wasn't given much info. about it at all back then, maybe there wasn't much info. available. I asked to be tested for it by a RE because I read that there was evidence that it could cause miscarriages and sure enough I had it- among other things I asked to be tested for back then (low progesterone and antiphospholipid antibodies).
The RE back then and then the high risk pregnancy doctors told me to always stay on the folcaps and the baby aspirin. I was only told that my body could not absorb folic acid correctly, which could result in high homocysteine levels. My homocysteine levels were good though back then. So, that was it.
I went off the focaps and baby aspirin after I had my son in 2005. I didn't really give it much thought, until the end of 2009 when I felt my body was ready for another pregnancy- so I got all my scripts in order- prenatal, folcaps, progesterone, and heparin. I figured I would give it 3 months of being on folcaps and prenatal. Then I would start the amoxy and try to get pregnant and after a few weeks of taking the prenatal and folcaps- all hell broke lose in my body.
So, I happened to read one of Terry's posts to someone else which mentioned MTHFR and something about folic acid and decided to look further into it. I even mentioned to my husband a few times that the only thing I did differently around this time was taking vitamins regularly!
So, now I am finding out that the folcaps (which has 2.2 mg of folic acid- is not even the right form of folate for MTHFR and the prenatal has the wrong form - 1 mg of folic acid. So I was taking 3.2 mg. of folic acid, which even though I was probably not absorbing it correctly, it could have been toxic? Who knows? I have other things this could be as well, so it is very confusing to me.
Anyway, I figured I would take the right form of folate and decided to do the simplified 5 protocol for now. I don't really have intention of getting more testing, because I really can't see taking more supplements! I am so, so bad taking pills regularly- this is enough for me....
Sparkle- yes, if you have these specific MTHFR mutations, you wouldn't want to take a regular multivitamin with the methylfolate because they compete with each other. The multivitamin on holistic heal has only 100 mg per 6 tablets- but the simplified 5 protocol only indicates to take 2 tablets a day, which only amounts to a little over 33 mg. of folic acid, which is such a minute amount.
The other thing I am learning about this mutation (or have heard) is that it results in your body having problems making glutathione, so not sure how well the precursors work for us. I am using glutathione powder from Jomar Laboratories (bought it awhile back as BobinMaryland was using it back then). I have heard that oral glutathione does not work well though. I started to look into liposomal glutathione, but don't think i got much feedback about it.
I am not working with a doctor, so I have no means of a script for glutathione.
so confusing- anyway- i started this protocol a few days ago and did have 2 days of mild knee (joint pain) which i never have. so who knows?
does anyone know if the simplified 5 protocol stays on those dosages mentioned above by Terry or do we increase as we go along with it?
My goal is to stay on this a few months and then at some point probably just take b12, methylfolate, and b6- along with the right prenatal.
DawninVA- do you know if we have these mutations if we do absorb other forms of B12 then (i am assuming b12 is not really the issue then- therefore the methy b12 does not have to be included anyway). I mean i guess i really don't have to add the methyl b12 if i am safer with other forms of b12- i do have a cap in my mouth with a silver post. definitely do not want to stir up more toxins..... trying to get rid of the ones i have now.
Maureen
Posts: 871 | From NJ | Registered: Mar 2007
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sparkle7
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Just a quick note - you may want to take NAC as opposed to glutathione. I don't think glutathione is absorbed properly via oral route.
I was trying out making a suppository with the powder & coconut oil but I didn't care for it. Seemed like it was easier to take NAC.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I am taking NAC, but have heard that those with this mutation are not all that helped by taking the precursors to make the glutathione- i think body can't convert it or something like that.... maybe someone else can help me out on this explanation??????
anyway, in that case we need to take it directly. problem is that i know oral route is not that effective and me doing suppositories- probably not going to happen for me....
thanks sparkle for your interest in this and for posting articles, info., etc. i appreciate it!
Posts: 871 | From NJ | Registered: Mar 2007
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posted
the other thing i wanted to mention as to why i am not all that concerned about the other mutations being a problem for me, etc. is that from what i can understand it seems like those who are chronically ill with CFS are the ones who these affect or people who cannot get well.
i did get into remission for over a year- no killing agents except olive leaf/oil of oregano, and sometimes grapefruit seed extract, completely living like a normal person, etc. no real lyme symptoms. the only thing i had in that time was left ear symptoms (fullness, pulsatile tinnitus). However, I saw an ear neurologist a week ago and he thinks I have something called an AVM, basically a twisted blood vessel in my neck, so i have to get more testing. he is convinced though. so that could be the result of the pulsatile tinnitus too- not lyme afterall.
if so, lyme was in remission and i never really had CFS (i always worked through lyme treatment getting up at 5:30 am and commuted an hour and 45 minutes each way!, raising my child, playdates, social life on weekends, etc.) so, although i know lyme can come back, i am thinking what i am dealing with now is toxins released from all that folic acid- although it was not methylfolate so don't know for certain.
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Dawn in VA
Frequent Contributor (1K+ posts)
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Maureen, I forget the name of the other ___B12 that some feel can be used instead of methylB12. It begins with an "h" I think. You probably know about this already.
The last time I had my methionine tested, it came back as a flat "zero". My glut. is always, always low as well.
I'm still saving up some dough to do the Yasko simplified protocol, so I have not tried it yet, but certainly plan to begin it by May.
I am certain that the SNP mutation(s) I have limit my detox ability.
If you ever find that the NAC is making you feel worse or is not helping, you may suspect a transulfuration pathway problem, too.
I know you said you are not working with a doc, so can't get a nebulized or IV script for glut., but the prescribing doc doesn't have to be an LLMD. I don't know if you meant "LLMD" or "any kind of doctor". Maybe your GP would do it b/c it's not specifically Lyme-related.
Get some testing done, see what your glut. levels are if you haven't done so already. That might (should) be enough basis for someone to write you a script.
Another option is glut. suppositories. Again, you do need a script for those AND sometimes insurance will pay for them. You'll need to order them from a compounding pharmacy. Xeneplex is a non-Rx suppository- you can just buy it online. I always use it for liver support b/c, in addition to glut., it also has organic coffee extract (and a bit of EDTA). Kind of pricey, around $89, but it's something I always budget for.
I have no idea how much glut gets absorbed into the bloodstream via the above mentioned supp's. Have never tested "before" and "after".
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posted
i do notice that when i take the NAC i get achey. when i don't take it, i am fine. what does that mean? if i have a problem with sulfur- does that mean avoid them or is there another "trick" to this? i took bactrim abx. in the past and didn't have a problem as far as i know- it helped me a lot. i know it is a sulphur abx.
not sure about the vit b12 you mentioned. i ordered the perque b12 guard i think it is called, but have not gotten it yet. i had the other supplements, so i am taking those four and when the b12 comes, i'll add it in to the protocol. so far,no real problems with the protocol. 2 days of slight joint knee pain, but i was also taking lots of NAC, whey protein, vitamin C and glutathione when i started this. i stopped the NAC for now. Will add it back in again next week and see if the joint pain comes back- then i'll know.
i know when i took it for a few days last month, i felt very achey too. so not sure if it is a problem with the supplement for me, in which i should avoid it or some sort of good thing and maybe i should stick with it.
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sparkle7
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I saw a website for a lady who does Psychiatric Nursing. They offer alot of the Genova tests. I was going to give them a call to see if they deal with Lyme.
Seems they approach everything from a "natural" biochemical perspective.
I was looking at my vitamins & it's really a mess if I have to take the "specific" folate. I'm taking supplements that have different kind of folate. I'll have to sort it all out if I do have this genetic issue.
I was eating some cereal today that has added folate, as well! Does it ever end?
Maureen - you mentioned something about CFS in relation to this genetic issue. Do you know more? I had CFS when I was in my 20s.
Seems like the Detoxigenomic test is worthwhile. I probably should have done it years ago.
Does the simplified protocol actually work?
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I don't know much about the relationship between CFS and these genetic mutations. It is just that a lot of those with CFS are finding they have these mutations and are doing the yasko protocol.
I think the one Yasko yahoo group has many with CFS on it. Maybe it has something to do with not absorbing B vitamins correctly- maybe DawninVA knows more or TerryK about the connection?
How much is the testing that you are mentioning? I think Yasko's testing is around $500.
If you aren't taking the methylfolate right now, I wouldn't worry about changing vitamins just yet. I think some of the folic acid gets absorbed, but just not that much of it if you have these mutations- maybe I heard in the neighborhood of 10%, but I may be wrong about that.
I only know one other person doing the simplified protocol at this point and she just recently started I think. She said when she added the folate 1/4 of each tablet, she had excruciating pain in her legs. She had to back off I think. Apparently this methyl folate really opens up the detox channels. It was told to me to start with way less than the 1/4 of a tablet of each (like just a tiny bit of powder from each one).
Interesting that you had CFS. How long did you have that? How did it come on and what do you think helped make it go away? I am assuming you recovered from that and years later started with the lyme symptoms? Maybe you really had lyme when you were diagnosed with CFS? It is so hard to know how many of us really had lyme that comes and goes depending on so many things. I know I had periods of my life that I did not feel well, then periods where I did feel well (before any lyme treatment) so I cannot pinpoint the actual onset of lyme for me.
I do know that I had many tick bites as a kid and my family was always camping, etc. Then back in 2000 I had 2 tick bites that I remember, although there could have been more since we constantly had deer ticks on our property and our dog was always bringing them in the house. I had a deer tick on me in 2005 too and it fell off in the car, we never found it.. well whatever, not going to really know at this point...
I wish others could give us feedback about the simplified protcol.
I am on my 5th day of taking all but the b12 recommended and I called the company I ordered the b12 from and the order did not go through, so I have to re-order it.
DawninVA- (or anyone else)- do you know if it is a problem that I am taking everything but the B12? I mean should I wait for the B12 or do you think it is okay to add that later when I get it? I keep thinking the folate needs the B12 but maybe I am wrong.
I hope others can give us more feedback sparkle. the mthfr tests i had run through labcorp at the time- do you have any insurance right now? if so, maybe you could test for that originally and get the test covered?
DawninVA- I actually don't have a GP at this point. I have an LLMD, but would have to go see her again to even talk about more tests or anything like that regarding the glutathione. If I do see a GP, what would be a good reason for requesting a glutathione test- the mthfr results? what is the methionine test that you mentioned? is that from a regular lab too? what would that show?
thanks for all the help! Maureen
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Dawn in VA
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Maybe not necessary to offer them a "good" reason - just ask them to run the glut. test b/c you want to know what your levels are and suspect they are low.
Check out the methylation charts on Yasko's website- you'll see where methionine is located. I had it done through Quest Diagnostics (similar to Labcorp, not a "specialty" lab) only once; it's a hard one to get b/c a regular doc will probably look at you cross-eyed. Even some LLMD's do. You may need to call your LLMD and ask for a lab slip for that one in particular.
(BTW, Quest can also do two other methylation mutation SNP tests: CBS and MTR/MTRR. If you have insurance, it might be covered b/c of your MTHFR results.)
Sorry, I don't understand your question about the folate and B12. Or rather, I don't know the answer.
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Hoosiers51
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I did the Simplified Protocol. I definitely didn't have a detox reaction to it ("herx"). I am not sure if it helped or not....it might have given me a little boost, but it was hard to tell, so I stopped the supps, because it wasn't working miracles or anything.
Right now I'm doing TMG by Now brand, and the Thorne 5P5 and Thorne 5-mthf....and they seem to be giving me a little boost too. Either that or it's the Doryx. I started that the same day as the 3 supps.
None of this seems to be like, THE answer for me, but I do seem better on them. And I think these 3 I chose myself might be making a bigger difference than the Simplified 5 did.
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sparkle7
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re: Maybe you really had lyme when you were diagnosed with CFS?
It's possible. I had CFS when I was 28 or so. I was able to get well through diet & herbs. Mostly astragulus. That helped alot. It took about 3 years to get fairly well & healthy.
I was well for about 8 years & then I started getting pains in my neck & back. I also got vulvodynia. That was actually my first symptom - but I didn't know at the time. My main symptom now is pain.
The CFS was mostly fatigue. I got some kind of a virus or cold & it never went away. I could have slept 20 hours a day. I had to work & survive, though.
I had a job working at night & my boss let me sleep on the floor under his desk... That was so long ago. He was a good guy & he knew I was sick.
Back then, I lived in Brooklyn, NY. I don't know how I would have been bitten by a tick but I guess it's always possible. Maybe at Prospect Park or on a hike at Bear Mountain...? It's hard to say.
Thanks for the info Hoosiers!
This website offers many of the Genova tests. I don't think you need a doctor to get the tests. There are other websites where you can order the tests yourself. I'm not sure how it would work with insurance.
I'm not sure if you have to have a consultation with the people at integrativepsychiatry.net in order to get the testing. It shouldn't be that hard. I can post other DIY websites to order your own tests if this one isn't good. I haven't called them, yet.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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posted
PS - Prepaid lab tests - You don't need a doctor... It may even be cheaper than a doctor..?
posted
DawninVA- thanks for the info. regarding the tests that Quest can do. I am pretty sure my LLMD has no clue what this whole thing is about though.
Maybe I can send her a fax and explain and see if she would order the tests. She is very careful though about things like this and I doubt she will just order them for me.
I have asked her for things in the past and she won't do it. I think it all amounts to me not seeing her constantly. I'll try though. What can I say the reason is in relation to lyme disease?
What is involved with the other SNPs that you mentioned? Are you likely to have them if you have MTHFR? I need to know why I want those tests ordered before I ask her.
Other than that, what kind of doctor do you think could help me order these tests? I don't need referrals so I can go to a specialist, but don't feel like wasting my time. Maybe I can ask the neurologist to order them for me since I already saw him a few times? Again, I need the reason though why I would want them.
Posts: 871 | From NJ | Registered: Mar 2007
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posted
Hoosiers- when you did the simplified protocol did you take the dosages mentioned above (in TerryK's response)? Did you increase the dosages as you went along? How long did you do it?
What is TMG by NOW brands? I'll have to look it up?
Do you know if other b12s work with the methylfolate for absorption or does it not matter that much since the methylfolate is the active form? Those with this problem can aborb other B12s than just the methyl b12?
I guess what i am trying to say is the problem just with the folic acid, or is it that we need specific forms of all b12? i am just trying to understand this better- the whole picture in relation to mthfr, since as of know that is all i know i have.
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sparkle7
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I don't understand why your doctor won't do the tests you would like. What does it matter to them?
Is it an insurance thing, a money thing, or a control thing?
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Hoosiers51
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Maureen,
The simple answers to some of your questions is that I don't know. I am not looking too much into the science of this, since I have very limited energy/brain stamina.....I am just randomly trying things.
There is a supp by Thorne (I think) that is basically supposed to support methylation overall. What exactly that means, I am not completely sure. But the three supps I'm now taking were part of that "cocktail" supp, so I decided to just kinda copy that main idea and take those element separately, in higher doses.
All of the 3 supps were labelled as supporting healthy methylation processes.....I think! Can never be sure if I'm remembering correctly. I didn't just choose B vitamins at random though....I read things saying, "this supports X problem, this supports methylation" and I said "great, I'm ordering a cheap and effective form of it."
I think I read somewhere that with autism and people with these genetic issues, you just gotta see what works. Sometimes TMG (trimethylglycine) is the magic ticket. Sometimes the correct folate is. So I decided to order a few and see what happens. I do seem to be seeing a change for the better. I know others that have seen changes from TMG (trimethylglycine....I got mine from iherb.com), so I took a chance. I honestly am not sure which of the 3 is helping me.
I am normally on methyl B12 shots and they normally help me a little....but I haven't done them in 2 months because I was having a hard time getting them since I just moved. I plan on restarting them soon.
The Simplified 5 I was on for about 1-2 months....I did whatever doses Rich V. suggests on his handout....I think I started with the 1/4 of a pill of two of them....then I might have increased that a little. I then stopped the Phospatidyl Serine because I was getting an adrenal test and didn't want that supp to interfere since it calms the adrenals. Then I eventually just stopped the other 4 when I ran out.
I'm not sure about your B12 to help folate questions.....don't even want to guess b/c I might be wrong. I am not too concerned about it though....like I said, I'm just kinda throwing things at the wall to see what sticks (aka what helps). I figure if I feel better, I'll take it, and that's about as deep as I'm allowing my brain to go right now.
Good luck! Let me know if anything I said didn't answer your questions.
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Dawn in VA
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If you need a reason, here's a simple one: detox is impaired if you have any of the methylation and/or transulfuration SNP mutations.
Sorry to be short, but if you look at Yasko's testing, you'll see ALL of the SNP's you might want to eventually get tested for. Try CBS (another methylation SNP) and SUOX (transulfuration SNP- I think- double check via Yasko to make sure) through QUEST. I think they can do them there.
If your homocysteine levels have ever come back high, that's another reason you could site to get tested. I think your emboli issues are plenty reason enough!
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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treepatrol
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posted
Very interesting TC the web page you gave
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
sparkle- i have no idea, i just never have good luck with doctors. i think it is more a matter of control than anything else. i avoid doctors as much as i can because it is always such a frustrating experience.
Hoosiers- thanks for the response. Since you are really one of the only people I know who tried this, with the exception of someone trying it now, I was wondering if you are supposed to ramp up on the dosages on the 5 supplements? i know it says 1/4 of each of the folate pills, 2 pills of multivitamin, 1 of each of the others. Is the goal to ramp up on the folate and the rest stays at those dosages?
DawninVA- thanks for the info. regarding Quest and also thanks for the possible reason i can say for requesting the tests from a doctor.
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