Topic: MTHFR - genetics- 23andme- messing with your genetics!!!
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
and so it goes on ....
those that may know me will know that I search for answers.
BUT, I realy did it this time- on myself I think.
I went to a genetic "specialist" and he plunked my 23andme report into his computer and it told him all that was ill with my mitochondria, which was GREAT, but... now I know something I didn't know prior:
DO NOT MESS WITH GENETICS
this is what happened I first went with the intent to rid myself of linguring tick damage sx to see if somethigng can be done (as this was/is all the rage ), and I also wanted to see about getting rid of my heavy metals- i was tested + for a few.
This person assured me that I was not a case that couldn't be fixed, but that it would take about 6 months for the genetics to get in line for me to expell the rest of all that ails me in the lyme spectrum, and that
after that we could work on the metal which "take much longer". I was fine with that and open minded and very hopeful, but as we al lpretty much after being >>>> over by so many dummies I was of course a bit apprehensive.
I decided to go full throttle into it and not loook back.
the first dose went bad. I got extreme head pain that felt like a balloon filled with concrete(not a head ache or migraine as these both feel very different) almost immediately, and some other reactions
i called hiim and he was great and said to only take x dose now and that i must be very sensative. I was sure i had told him that i was when i first went there!
but wanted to trust him. after that things did start to change for me. there was a TON of trial and error and there i was about 7 months later still trying to figure it all out.
It did really help me almost immediately with removing about 85+% of my anxiety and my anxious reactions to things, etc, which was phenomenal, and it was a terrific blessing to learn that my anxiety is all genetic!!!!
and that is why I have been almost dead from it a few times with heart failure(as it seemed to me at that time when it happened)
and also with some other important data . They really are working on this genetic stuff and are seeing new and interesting info pumping out weekly on much of this stuff-
like that more resent discovery that there is an empathy gene to which i have a double defect in ,
so this makes me more empathetic than most people on earth! which REALLY explained a lot and helps me deal with everyone much better!
The sad sorry truth though is that is started to reallymess me up in other new ways! I am telling you al this in case you are considering giong the gene way to help with lyme, etc, so that you may make a more informed decision on what to do or maybe whom to go to.
The person I saw had great credentials, is a ND, and has a huge staff including many scientists working with him on all of this, making natural suppliments (that apperntly I am the only one having reeactions to) and etc.
he is HIGHLY regarded by many mpeople and other types of drs. and treats people from al l over the ocountry.
It finally dawned on me just this week after talking with a local natural health center I found told me this after I asked if the dr there knew about genetics:
" ... it's not just knowing the gene variants that are in your report, but which ones have actually been turned on. You don't want to mess with the ones that aren't turned on yet"
this really hit me hard in my brain and got me thinking. she was exactly rigth . the guy i have been seeing never takes into consideration my sympotoms or anythihng .... he only went by the report.
in case you are interested you can read below the areas in me that got better, changed , or got worse, or were new
To make it simple here are lists of what it helped with and what is churned up and messed up.
helped with : anxiety (HUGE + change) forgetfulness/ memory
vocabulary- IQ and brain function including vocab and conversation ability increased about 70% GABA- i became very calm and relaxed. very.
could drink coffee which used to send me speed frenzy for days after one cup became much more organized
things that went south: GI troubles- constipation and acid stomach head pain - extreme hormone issues
tinnnitus got louder became unable to process ANY alcohol extreme nausea constantly
became highly sensative to iron adn had to stop using my cast iron pans and now must avoid all iron rich foods
became extremely sensative to glutamate and now have to avoid those foods as well couldn't sleep , sometimes didnt' need more than 4 hours to function (may be good or bad)
I am sure there are things I am forettting....
as you may guess , since I stopped them all becasue I couldn't live with the head pain and nausea and this guy would or couldn't help me the right way, now all that fun bad stuff f is coming righ tback!
at least the tremendous head pain and nausea went almost away. I just couldn't live with that. I would have killed myself, it was so bad.
I have returned back into a neurotic, spastic , forgetful stupid pain in the butt. and of course the new stuff that came with these treatments has stayed.
Just wanted to say to be careful if you decide to do the genetic thing. even on your own.. you may be opening Pandora's box.
..............................................
(breaking up the post for easier reading for many here)
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
I had 23andme done and found out I am homozygous for MTHFR (no surprise). I am taking the B vitamin support for that but it's just a different form of B vitamins. It's helping me methylate, which was tough at first since it helps with detox, but is great now.
I also got confirmation of my DAO issues which affect histamine tolerance (I am intolerant).
Other than that, I really haven't done anything with it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Many are very sensitive to herbs. They give me many of the symptoms you mentioned... esp tinnitus.
Also.. are you still taking GABA or any Vit V6?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I can't take straight gaba. it is complicated... I have to go look ...I will do that tomorrow. im tired right now
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
I don't know, Lisa - I have a doctor who understands the 23andme genetic defects.
He showed me a methylation chart of 4-5 cycles, which I actually did find online here, and could hunt it down again. He showed me where the enzymes were in the cycles that were compromised, which byproducts were missing, and where he would start with supplemental boosting.
Yes, we are sensitive, but I bet a good practitioner like mine monitors the plan and the responses, as in let's try this, and if it doesn't work, let's try this, etc.
I always take the smallest dose of anything when trying something.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, Robin , this guy did that too, but idk... maye he's just too busy, or maybe he's tired of my 'sensativity' and thinks im non compliant or something.
I am just saying to be careful.. what looks straight up and down may not be and just becasue your meth chart may say "you need this, etc" doesn't mean you really do - unless it's been set into action. ask your gene person- they must agree.:: even though you may have those variants it doesn't mean your body needs fiddleing with if it's running optimally.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I know my case was complicated. I could see that.
I make NO gaba on my own, but I can't take gaba because of the way something esle was running or other... I fofrget what he said, but I know when I took gaba a year or so ago on my own without knowing any of this - it made me ill after a tiny dose.
SamE the same thing
so I make no gaba. imake too much ammonia but my body doesn't get rif of it (this is what my chatt says), my gluathione was messed up as well as jmy glutamate, glutamine and . there are othier things as well, but i can't look righ tnow as I should be in bed becasue im really tired b ut just saw computer on here and wandered over to shut it off and was tempted to respond, ha.
it's also very complicated in the aspect that they are still discovering new things about all this and maybe there is something that they haven't even found that affects me and that would cause sx in my for whatever reason and since it hasn't been found yet who would knmow what or how something may or may not bother me or you or anyone?
this person surely knows what he is talking about as he has a huge list of patients adn also an increasing follwoing of mainstream physicians that have stood up and taken notice of his work.
I woudld like to compare with another person , and I have the info one someone else that is supposed to be really great, but havent' gone there yet.
If there is one thing I know it's that we, as patients, know ourselves better than any dr can some times. right? I mean, haven't we all been there as some point where we try and tell a dr that this or that is happening and they poopoo us and tell us it can't be? sure. just becasue THEY dont' know it , doesn't mean it still cana't be true.
This guy , along with his scientific colleugues, has developed an entire line of pharmacutical grad supplements . it's not just anyone that can accomplish that.
they are natural - yes, but many do have animal prducts in them like ox bile, or avian something or bovine something, and that kind of bothers me too - even though he says they are all the purest available sourcce from New Zealand. IDK...
if yours seem to be working then good, but everyone's different and mine could be just a bit more complicated and someone else could be worse than mine. im sure there is not a one shoe fits all- just like anytihng else out there. this may just not be for me in some ways.
im so tired I don't even know if im making sense. haha
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
My practitioner said right from the start that genetic polymorphisms are not necessarily turned on. That is why she likes to use a good nutritional test as well as your history and symptoms to see as far as she can which are being expressed.
I am very sorry that your experience so far has been complicated and I think reporting it here helps people to understand that the genetic results and acting on them may not be clearcut. Good luck, Lisa and thank you for raising these issues.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
posted
I've had a similar experience. My glutamine levels are very low and my gut was in bad shape so my doc had me supplement glutamine. I had an allergic reaction to it. We got around it by using glycine sticks.
It's an art addressing all this stuff. And you can't go too fast.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Yes, my gene person also told me that we get out polymorphisms turned on through life and that they may not all be. and like I said heis first main focus was for my anxiety becasue it was debilitating, but maybe he forgot or got sidetracked or whatever. he is forgettful like I said.
thanks ukcARRY, and everyone else for responding.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
sixgoofy, yes, that is what I am taliong about self treating or going somewhere where they don't have a total picture. mine told me that you can't just take samE becasue your genes say you don't have any- or folate or gaba or whatever--that part I believe him and yes, I have hear d that from other sources as well.
I was just looking for a fix and maybe the best way is to just treat the effects of it andnot the system itself for me?? idk..
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
You might want to read some of Dr. Yasko's info. She monitors her patients with testing such as urinalysis in order to determine what is happening with the treatment and adjusts accordingly. She has probably been using nutrigenomics longer than just about anyone else.
I have yet to talk to any doctors that actually monitor the treatment in an objective way so I think her approach would be helpful for those who are having difficulty with methylation.
posted
I've been working on Dr. Yasko's program for about two months. So far I have a lot of cognitive improvement and better energy, and no downsides except for detox symptoms if I go too fast. I have to go really slow and be very careful, but they give you a lot of advice about this.
She is treating children with autism, some of them really young and many quite fragile. She and her crew really seem to get that people as sick as us have to be extremely careful with treatments.
On my genetics test, of the 30 genes they look at I have 14 mutations, 6 of which are double mutations (homozygous). That doesn't really mean TOO much, after all, I had those genes when I was healthy, right?
You can't "treat" the genes, you have to treat symptoms, informed by biochem test results. For example, we found all of my amino acids are dramatically low, so working on that along with building support for methylation. It's all connected.
The genetics are just an indication of where structural weakness might be. The recommendations I get from her are mostly based on my test results from hair metals & minerals, urine metals and minerals, and lots more, and of course my history and symptoms.
I feel that this is addressing my health problems as a SYSTEM, instead of just trying this, trying that, as I've been doing for years with my Lyme treatment. I am optimistic that this will get me to a better place, make it easier to treat the tick stuff, make it easier to detox metals, etc.
It's a lot of work figuring it all out, really a lot of effort. Since my husband is a scientist he can help me with some of it, or at least reassure me. I can't work so I have plenty of time to read and study. I don't know if this is for everybody, just because of the cognitive effort being beyond what many of us can cope with.
I'll report back in a few months how I'm doing...
Posts: 261 | From Nebraska | Registered: Jan 2010
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
terryk, yes, this person I saw did tell me to get the organic urine analysis test, but I couldn't afford it at the time and now forgot until just now that i should have done that!! you know what/? he should have kept at me about that.. I blam e him for that. he should have known betteer to not just treat someone without knowing what is coming out like that!
well that is my opinion anyway.. especially if you have told your healthcare person that you can't remember anything!
I will check out that link. thanks!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
TErryK o- or anyone else that can answer--- i am on this site and i am not really sure where to look on here for help? do you have to order that $500 test to use the program??? I don't have that kind of money righ tnow. ugh
plus, I have my 23andme results. isn't it similar to that?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
SILLIA- thak you for that input! I am interested in this, but need to save up some omoney and it irks me if I need to do geentesting all over since I have that already. the other part of testing i don't mind getting if it will help.. the site looks good and seems like she knows her stuff.
i hwish you success!!! and i hope others find it as well.
there is way more to healin gfrom all the buggers that just treating for lyme. I know that for sure- at least for me and many others that genetically hold on to disease, etc.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
Yes, you can plug in your 23andme results into Dr. Yasko's program. It's a free service. I haven't used this myself but plenty of people do. www.knowyourgenetics.com
Be patient, there's quite a learning curve. If you want Dr. Yasko's direct comments about your case you need to order some testing from them. Otherwise, the forum has tons of info, free for the searching.
Edit to add: You wouldn't need to redo the genetics test. What I meant to say is if you order other tests, like Hair Minerals Test, etc., through them you would get comments back from Dr. Y. (You'd also fill out patient history info, etc--explained on the forum.)
I am spending a lot of money on this. Lots and lots of supplements, some quite pricey, and I will do regular follow up testing. My husband and I are committed to trying this program because we both feel the science is good.
For me personally, I had reached the point where I could hardly tolerate any Lyme treatment any more. My herxes were so bad, I knew there was something desperately wrong with me. I really felt this must be the missing link, even before I got my results back. We will see!
Posts: 261 | From Nebraska | Registered: Jan 2010
| IP: Logged |
quote:Originally posted by LisaK: sixgoofy, yes, that is what I am taliong about self treating or going somewhere where they don't have a total picture. mine told me that you can't just take samE becasue your genes say you don't have any- or folate or gaba or whatever--that part I believe him and yes, I have hear d that from other sources as well.
I was just looking for a fix and maybe the best way is to just treat the effects of it andnot the system itself for me?? idk..
The only thing we've treated that I didn't have other testing for is methylation. My homocysteine was on the high side on blood tests, that coupled with the MTHFR gene meant we treat.
All the other stuff we did with hormones or anything else wasn't based soley off the 23andme test. It was supported by other tests, blood/urine/stool.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks SILLIA!!! I loaded my report into the yasko site.
now what?
how do I know what to take, etc.... I mean there are like 150 things recommended to me. how can anyone possibly afford all that? and many are what my previous gene person gave me. so how do i know what is ok and what might bother me... such as this:
the B12 injection says this: "B12 injections (choice of Hydroxy or Methyl depends on COMT/Taq status"
so what does that actually mean?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Usually she does not have people start the B12 until some of the foundation is in place, and you've gotten your lithium in place.
As far as where to begin, start reading until you get a feel for the sequence that's recommended. The foundation is called "Short Cut supports" and they recommend doing that before starting any of the methyl stuff. See the Companion Guide or browse on the forum--questions like this get asked a lot.
It took me two or three weeks of reading to figure out what I needed to do-- it's complex and confusing, even for people who don't have Lyme-brain!
Posts: 261 | From Nebraska | Registered: Jan 2010
| IP: Logged |
posted
About the supplements--you don't take them all at once, you add things one at a time, starting very slowly with small doses. Just like we do anyway, with Lyme stuff, at least I have to go low and slow.
You wouldn't necessarily need all those recommended things, it depends on how you are doing, what your symptoms are, how you react. But yes, it is a pricey treatment. I figure I'll be spending a lot on these supplements for maybe a couple of years? We'll see.
Nobody's going to tell you how to do this...I found that I had to do a lot of study to figure things out. It got easier once I started doing it. Just one thing at a time, learning as I go.
Posts: 261 | From Nebraska | Registered: Jan 2010
| IP: Logged |
posted
Has anyone used nutrahacker? I think they are about $50 for their info.
Lisa .. remember that you are not treating a "disease" ..
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
"It took me two or three weeks of reading to figure out what I needed to do"
that is exactly what I am afraid of... I cannot do this. my brain is swirled and confused most of the time. I can't even remember what I post on here most of the time!
I need someone that really knows what they are doing and then trust them.
I guess that would be expensive. AND not sure I can trust people even more now after my genetic person screwed me over. no one cares any more.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Lymetoo, what do you mean by that please?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
Test...
Posts: 261 | From Nebraska | Registered: Jan 2010
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
lymetoo, I am just afraid a bit that I have pernicious anemia. that would not be good.
I have stopped all my supplements - everything almost- to get bloodwork done to see what it all looks like with no 'additives' in me. I am so confused and tired of no dr knowing or believeing anything about me and how I feel.
I KNOW for sure that I have low B12, but not sure how bad it is when I am off al lthe stuff for it as I have taken it for at least 30 years.
and I do feel like I am dying some how. . well, I guess we are all dying. but knowing that my body can overload with iron to the point of permanant and possible deadly damage, well , that is in the back of my head too. so by not treating I thinhk I could do some harm, but I am not sure of anythign really.
just so tired of all this
the B12 people say"just try B12 shots and see if you are better and then that is how to know you have PA" but that just ... well, idk.... im just so tired of it all
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
![[Eek!]](eek.gif)
![[cussing]](graemlins/cussing.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic