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» LymeNet Flash » Questions and Discussion » Medical Questions » MTHFR-im trying to find ppl who have done the protocol and improved

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Author Topic: MTHFR-im trying to find ppl who have done the protocol and improved
lpkayak
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anyone?

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Lyme? Its complicated. Educate yourself.

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Robin123
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There's facebook discussion groups on this too.
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SacredHeart
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What is this? I know nothing about it.

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Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono

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jlcd1
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i did the 23and me test and i'm about 5 months into treating my methylation pathways. My anxiety has def improved but it takes time as with everything does with this disease.

http://www.tolhealth.com/

this is who i use...Bob Miller. He does phone consultations and charges $60 for the first then $30 after...plus supplements.

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Keebler
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SacredHeart,

for as start, cross search both terms (in separate searches) "MTHFR" and then also "Methylation"

with "Amy Yasko"


http://www.planetthrive.com/?s=Methylation&x=0&y=0

There are ten good "Methylation" articles / links here at "Planet Thrive"
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Spiritwalk
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My LLMD and the two rheumatologists I shared my results with didn't seem to care or they didn't really put much stock into it. I had heterozygous results for both the C677T mutation and the A1298C mutation.

I really have done nothing with this information, but the claim with the test was that my results were associated with:

--decreased enzyme activity (approximately 50-60% or normal activity).

--increased homocysteine levels.

--potential methotrexate intolerance and patients may require dosage adjustments or discontinuation

--correlated with increased risk of cardiovascular disease or thrombosis.


Mainstream medicine doesn't seem to recognize this as a viable test. No surprise right?

This is my problem with all these alternative tests. It's difficult to tell what is real and what is pseudoscience and a waste of money and effort.

I am more convinced than ever that the medical industry puts money before saving lives, but I'm also convinced there are a lot of so-called "naturopaths" who take advantage of people like us who are desperate for help.

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Razzle
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My Brother (does not have Lyme) has noticed significant improvement following the MTHFR protocol. He is a lot calmer (less anger, less anxiety), more cheerful/positive outlook on life, improved sleep (quality & quantity), and energy.

--------------------
-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.

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Robin123
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Sacred Heart, it affects our ability to detox. Some can detox very well and others have a hard time. For the latter, it's often due to genetic mutations in the enzymes of the methylation pathways, ie what processes everything we deal with.

I did both the detoxigenomic test and the 23andme test - between the two of them, it shows what I react to too quickly and what I process either too slowly or not at all. I have a doctor who knows what to do with results.

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Alisandne
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I did the 23andMe test too, and discovered the MTHFR problem (among other things). I suspect it explains my extreme and dangerous reaction to potatoes, tomatoes, peppers, eggplant, and anything else containing solanine.

Solanine is a poison (if you see a green potato, you're looking at an excessive amount of solanine), but present in vegetables in small enough quantities not to be a problem for most people. But apparently the MTHFR mutation prevents me from processing and eliminating it properly.

When I started treating the MTHFR I felt better immediately, but that didn't last. I also have a mutation related to sulfur, and I've read that this one should be addressed first. Life gets complicated.

A further complication is the four tick bites I've had so far this summer.

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Judie
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I did the protocol for a year. It didn't make much difference (not better, not worse at least). Your mileage may vary.

There were some supplements I was told to avoid on nutrahacker which were inline with what I reacted badly to in the past, so there's something there. [Smile]

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ukcarry
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When people refer to 'THE' protocol, what do you mean? Is there a standard one, or do you all mean Ben Lynch's, Amy Yasko's?
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LisaK
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I am treating aand seeing definite improvements with my calmness. I do not crave any more alcohol- hardly ever! and I used to want to drink as soon as I woke up- because my body needed to try and find a way to calm down.

I don't react as spazzy to anything as I used to at all, which is really nice, although I do still get that way but it is much less.

not sure what other things are related to this so Im not sure what else to mention. I just feel much more evened out. and my risk behavior is almost non existent whereas it used to be front and center

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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LisaK
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ukarry, protocol will vary depending on who you seek for treatment.

my protocol is from a genetic specialist. he uses supplements that he specially formulates and he is gaining huge recognition nationally. he works with other professionals in his research- like some big time scientists.

he does do skype appointments and they do ship the supplements to you. if you want his info, let me know. he is really nice and very inexpensive- $29 for a followup!!!, although the supplements cost me about $250 per month right now because I take a lot.

this is a life long thing also. so I will be on some of the pills forever, but not all of them.

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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ukcarry
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Thank you, Lisa K. I wondered if that was the case.

I may well ask you for your man's contact details in the future, but when I finally get my results, I will probably try first with a UK practitioner, just for simplicity's sake.

It is good that you are seeing some positive changes in your calmness and I hope you continue to improve.

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LisaK
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thanks ukcarry. good luck to you as well

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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lpkayak
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Ty al for replies. Im being seen and treated by environmental doc who is mold specialist. She did genetic testingvdifferent from mthfr...and i was wondering how the two were the same and different

I have one gene that shows i have trouble detoxing mold and another that shows i have trouble detoxing mold, lyme and other biotoxins like pesticides.

I dont have a sx related to being calm...but i do have a lot of mold toxin sx

I hope the tx will help with both my mold and lyme exposure

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Lyme? Its complicated. Educate yourself.

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LisaK
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yes, my genetic guy says he feels the difference between people that can take 4 weeks of abx and be cured from tick disease, and those that are sick forever is genetics.

I have a lot of mixed up / not working genes, but he says I am 'fixable' and it will also help my body rid itself of heavy metals and molds and all that.

all the testing is the same for genetics, it's usually the specialist you see that determines what you will be working on as not all of them are the same- the specialists I mean.

when I mentioned to my dr that I was dreaming about booze he said yes, because I want gaba so bad..... but he then casually mentioned that I need to be careful becasue I have the perfect genetics for cirrhosis. [Eek!]

I need to ask him what else he sees in there....

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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TNT
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quote:
Originally posted by LisaK:
I need to ask him what else he sees in there....

 -

Sorry, Lisa, I couldn't resist!

I really am glad it is helping you!

I have had the same mileage as Judie with the whole thing of genetic testing and supplementing. I personally have sunk so much money into it without much return. I have gotten more mileage out of treating the infections.

But, I realize for some people this can be very helpful. It definitely has it's place.

lpkayak, I hope some of these comments don't discourage you, especially if you are making progress. I wish you much improvement!

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canefan17
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I've done it and sometimes remember to do it but saw no real changes (unless I took too much - then it was bad news).
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MannaMe
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My husband has done the testing and found he doesn't detox well. That explains why he often felt so toxic.

We haven't seen big improvements with the supplements. But it does seem things have evened out. If he runs out of one of the supplements, he will notice that he feels 'off'.

I do think the testing is worthwhile.

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LisaK
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tnt, I ran out of money long ago while on abx. that is what pushed me to find alt drs that do help. I tx with herbs and have been passed as cured by 2 drs- from tick disease.

genetic guy doesn't treat diseases, etc. he fixes genes. he charges 29$ pervisit. and I get a 15% discount on all suppliments because I get poor man's discount.

I spend wayyyyyyyy less on this protocol per month than I did treating for the lyme/bart/babs/parasites/everything else.

the guy i see is an expert in the field and gets offers for national level talks, etc for his breakthroughs- and this is from the traditional drs that previously dismissed him as quakery. (he is ND). they all now want to get in on this new stuff because it makes sense and it works IF.....IF the right person is treating you.

and IF you treat the gut issues FIRST. otherwise it won't work. and MTHFR is only one small part of it all. you can't just treat "that" and think you will be better. it doesn't work that way. it is an entire system of works.

...and asking him what else is messed up in my genetics isn't going to cost me any more money for his expert answer. it doesn't work that way. I felt WAYYYYYYYYYYYYYYYYY more ripped off by the LLMDs that charge 600$ ++++++ an hour for their house remodelling or their posh offices. or whatever powers their ego.

I think a total of $300 per month is not bad to spend to feel better after what I have been through. H E double hocky sticks, I was spending that before my dx just to *sort of* feel good! [Wink]

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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TNT
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LisaK, I hope you didn't take my comments as an offense... it was not meant to be offensive. I was just trying to be humorous about how it is for some people. Take Amy Yasko or Ben Lynch for example. Their testing, consulting, and supplements are outrageously expensive. Even their seminars are overpriced if you ask my opinion.

It all sounds like a money-making enterprise to me. Sure, it can be helpful. But, how many others besides you have said, "Wow, that really fixed some of my issues!" ???

I just think that for most chronically ill persons, it is a small piece of the puzzle. And, it should not cost a fortune to test and supplement these mutations.

Three-hundred dollars a month is a significant extra expense. Each person has to know if the benefit/cost ratio is worth it. If you are getting that much help, great... definitely worth the expenditure.

But, if a person's experience has been like mine, then it was almost a complete waste of my money (for many months). The rip-off about it was that a nutritional consulting practitioner told me that addressing my genetic mutations would make me well. HOGWASH!

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LisaK
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I thnk its like anything- if you go to the RIGHT person for YOU, you will see results. and to dismiss it because of some bad apples is wrong in my opinion.

it's been the cheapest, quakiest drs around that have actually helped me the most.

I was one of "the most chronically ill" types. and I got way better than I thought I ever would. I wasn't in a wheel chair, but I was brain dead and almost killed myself because of bartonella. many times. I was left to die on my own with no help from anyone and only minimal support from one person in my life.

I didn't give up even though I wanted to. prayed tons, found myself in the hands of people that were my last straw and for some reason it worked for me. call it divine intervention or whatever you want, but if I hadn't gone to the alt. docs I would probably be dead now. or in insane floor of hospital. or curled up in a ball in my bedroom crying eternally....

to go from not being able to walk to get the mail or take a shower, to riding a bike in about 18 months is almost a miracle to me. not one countless others haven't experienced or seen, but to me , yes.

I am not sure what you mean by "extra" expense??? isn't every expense for tick disease a true gamble? how does any one of us know what will work and what will not until we try it??? I wasted hundreds on abx that did very little for me and some made me feel much worse. I said my TOTAL expense is now $300 per month. that includes everything I do/use. including eye drops for lubrication and everything else. I think that is pretty good comparatively.

so for 6 months I "wasted " about $300 a month just on abx.

I wonder who your dr was since we are both from same area. I hope it isn't whom I see. he told me it will be about 6 months on this protocol to see the big changes in the area we are working on. it has been about 3 months now for me.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Marnie
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Take a very hard look at "HomocysteX Plus" by Seeking Health.

Google: MTHFR autoimmune

MTHFR mutations are *very* common. One is also linked to MS. (MTHFR A1298C polymorphisms and MS) though C677T maybe implicated too.

MTHFR mutations -> hypomethylation and high homocysteine (not good).

For those who need a "primer"

MTHFR stands for methylene-tetrahydrofolate reductase.

It is an enzyme that converts folate you eat into the active form (5-Methyltetrahydrofolate).

The folate you eat (DHF- dihyrofolate) has to be converted via many steps to the active folate 5-MTHFR.

The MTHFR enzyme affects this at the last step. So if you have a mutation in the gene then it’s going to be affecting how much active folate you have available.

• MTHFR C677T
• MTHFR A1298C

Heterozygous = 1 copy of the gene from either parent

Homozygous = 1 copy of the gene from each parent

MTHFR C677T Heterozygous = 40% loss of function *

MTHFR C677T Homozygous = 70% loss of function *

MTHFR A1298C Heterozygous = 20% loss of function (research not known)

MTHFR A1298C Homozygous = between 50-70% **

MTHFR C677T & MTHFR A1298C heterozygous = compound heterozygous = 50% loss of function

If you haven’t been tested and want to find out if you have this common genetic mutation, you can ask your doctor to order MTHFR gene mutation testing through LabCorp.

Better yet you can order a genetic profile directly without a physician order online through 23andMe for only $99. (Saliva - spit test). Results given, but "explanation" requires your own searching or put the raw data from 23andme into a place like geneticgenie.com

This mutation can cause a LOT of diseases and prevent our ability to heal, IMO.

But...I believe nutritional support can help us work around genetic mutations.

Genetic mutations can also impact the function of abx. to work.

Tetracycline impacts iron and proteins - estrogen receptor beta and bone morphogenetic protein 2 (BMP-2).

(Bb looks to use iron for quorum sensing).Persons with Hemochromatosis might not benefit as much from tetracycline since they have an iron overload problem. It is not as rare as you might think.

[ 08-16-2015, 02:28 PM: Message edited by: Marnie ]

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WakeUp
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I haven't had the MTHFR genetic test, but I suspected that I might have a variation of this problem based upon a positive reaction I had once had to a B12 supplement I had taken years ago-- which I was never able to replicate once those vitamins ran out, and I wasn't smart enough to read the label at that time.
I had no idea that this B12 was probably a methyl B12.

So I just bought the METHYL B12 a few months ago--- and I can now discontinue the much more expensive SAMe, and I didnt even have to spend money on the MTHFR test, which I probably will do in the future. (methyl B12 is at the beginning of the methylation cycle, with SAMe as an end product of the methylation cycle.)

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valeriedc
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Did the protocol after being diagnosed. It worked for a while then after running out of the supplements and waiting for the new order to arrived, noticed I was feeling better. So I scaled way way back and am now feeling better.
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