• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

23andMe results.... Where to even start?!?

Messages
15
Location
Atlanta
Hi Everybody -

I am not new to trying to fix my broken down health situation, but I AM new to looking at it from a methylation viewpoint. As you know, there is a LOT to it, and I figured I would throw my info up here and see what you guys might have to say -

To make a super-long story JUST long:

I am:

-a 43 year-old male.

-25 year history of depression, LOTS of counseling over the years - helps a little

-SSRI's have helped somewhat over the past 15 years, but a more recent ADHD meds regimen had made a BIG POSITIVE (if unpredictable) difference over the past few years, at least before my health crashed, anyway

-PLENTY of silver amalgams as a kid, ALL of which were replaced over the years (NOT safely, BTW) before I was aware that mercury was so bad for you, etc.

-TICK BITE 4 years ago - thus Lyme disease for the last 4 years, along with the usual other stuff - probable leaky gut, candida, (yes I took abx for a while, IV also.....) sinus staph infection ongoing.

I have done my own research and treatment for lyme disease constantly for the past 4 years. I JUST stumbled on some more info about methylation, the inexpensive genetic testing available now, etc. The more I read, the more "suspicious" I was about ME and methylation, etc. For the lyme AND for the depression, etc.

**Several months ago, I added in a VERY basic "methylation" protocol to my other supplements, and this seemed (possibly?) to help with my mood a little bit, albeit very unsteady.

** The Lyme was worse "physically" earlier on, but now is hardly a problem at all, except for treatment/medication reactions, HOWEVER,the neuro problems are worse than ever!! Memory issues, depression, anxiety, etc. I am MOST concerned about neuro-transmitters in all of this!!

I am attaching my 23andMe results that have been run through the livewello analysis. Of course there are a lot of problems there, starting with +/+ for A1298C ....

ALSO, I recently got a BUNCH of bloodwork done. Looking at some of those results, especially in light of my methylation status, seems to reflect a LOT of possible correlations. Here are a few of those results:
-LOW serotonin: 26 (ref is 56-244ng/mL)
-HIGH ammonia: 71 (ref is below 47 umol/L)
-HIGH homocysteine: 8.4 (ref is SUPPOSEDLY less than 11.4 umol//L)
-CD-57 (""lyme test""): 68 (ref is 60-360 u/L
-LOW NK (Natural Killer) Cells: 10 (ref 8-170 LU30)

The bloodwork also indicates that there are also a lot of other infections that are having their fun with me:
Parvovirus: 6.6 (ref is less than 0.9 )
Cytemegalovirus - positive
Ebstein Barr virus
Herpes6 - supposedly interpreted as a "past infection"...?
C. pneumonia IGG
Eosinophil cationic prot.: 15 -- indicates possible babesia, reportedly
Candida Albicans: IGG and IGA, both high

I have a LOT of other bloodwork, etc., but those are just the basics.

---------------------------

So far, I've been reading some Yasko, Ben Lynch, and a bit of Rich's info. I spoke to Caledonia too, which has been helpful. She pointed out a few a few tests I might consider, and ways to get going with gut health as a place to start. I would guess FOR SURE that leaky gut is a problem too.

I would still say that I am pretty OVERWHELMED with all of this info. I am also very interested in Freddd's info, although I am still just trying to figure out where to even START with that!!!

While it sounds like these issues have to be addressed in order, understandably, I DO recognize that the neuro-cognitive/depression/anxiety issues are CERTAINLY the hardest to live with, and I would love to target those as soon as possible, and/or maybe find other ways to support them meanwhile. I would really LIKE to get off of the ADHD regimen, largely because my profession has random drug testing, so I will HAVE to get off of those meds before I get back to my regular work...

I have a LOT of other testing results over time, so feel free to ask if it might help....

THANK YOU, everybody, and for what its worth, I REALLY appreciate these sorts of forums where some of us who really need help can "combine forces" and help each other out, in a way that NEVER happens in the usual """medical community"""!

-JR
 

Attachments

  • livewello analysis.pdf
    328.1 KB · Views: 28

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Hi JR,
Congratulations on your progress in figuring things out! You are certainly dealing with a lot of things. I don't know where to start - which of your things would need to be taken care of first, but the +/+ on both the MTHFR A1298C and the MTR give me hope that when you do get to methylation, that you'll get good results with regard to your depression. Those SNP combine to shift your methylfolate toward methionine regeneration (and thus homocysteine) instead of tetrahydrobiopterin regeneration, the enzyme that makes serotonin.

Question: did any of the test results show a B6 deficiency? If so, you might use the active form P5P.
My guess is that your protocol will include methylfolate but not B12...but I'd like some other opinions. And probably Vitamin C will help.
 
Messages
15
Location
Atlanta
Hi -

Looking at my results, the only B- vitamin I see is a level for B12 and its actually HIGH - 1540 pg/ml (ref. is 200-1100 pg/ml.)

I've had P5P in the mix for a few months at this point, as well as methylfolate AND b-12. Also about 4g of Vitamin C/day. I think I disturbed something recently when trying to switch types of sublingual b-12 (from methylcobalamin to cyanocobalamin, I think)

If you guys would find it helpful, I COULD scan all of this recent bloodwork and attach it here. I could also include my "last" doctor's basic notes on the bloodwork. Its about 20 pages. Is that a good idea?
 
Messages
15
Location
Atlanta
ACTUALLY, I will start by attaching the "summary" of the findings from the bloodwork. Sorry the picture isn't the greatest, but it should do. See what you think....
 

Attachments

  • IMG_0260a.jpg
    IMG_0260a.jpg
    681.8 KB · Views: 12

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
Hmmm, so this test is after a few months of P5P, methylfolate and methylB12? I wish I knew more and could help you. The only think I can think of now is that if you're going to supplement with Magnesium, that I was told to use magnesium glycinate. If you use magnesium oxide, it just goes right through you - ok if you're using it to treat constipation, but not good for getting it into your system.

Have you tried escalating doses of the methylfolate?
How much are you taking? prescription doses are in the 7.5 to 15 mg/day range. I wouldn't do that right away, but if you're only taking 400 mcg, you might think about increasing it.

Have you ever supplemented with either tryptophan or 5-htp? I'm not recommending it particularly. It would be interesting to know your serum amino acids, but without that, i don't if you're low in tryptophan and in general I don't know if there may be some harmful effects if you would take it.

Regarding Freddd's protocol, here are some notes I made to myself:
upload_2013-11-13_21-10-28.png


Essentially, if you take the amounts at level 1 and don't have a bad reaction, move to level 2 and so on. Or if you have any symptoms in his list (especially new acne around the mouth, spreading to face and scalp), then increase.

Right now, I'm using 3 mg methylfolate, 3 mg MB12, 10 mg AdB12, and 1.5 g L carnitine fumarate. That's only part of my protocol, but it's the part that corresponds to Freddd's protocol.

Nobody here is supposed to tell others what to do. It happens sometimes, but it's not supposed to. I, for one, know that I know next to nothing in this area. I know what I've experienced, what I've tried, what seems to have helped, but that's about it. I have read a little theory and a few medical articles, some of it I have come to accept, some of it I reject. But everyone is unique, and what helps some may hurt others.

Is the person who ordered your tests helping at all in telling you what to try?
 
Messages
15
Location
Atlanta
Hi Again!

Thank you again very much for the info/suggestions! (( I AM going to P.M. you, by the way...)) To answer s few of your questions:
-I've been supplementing with the better forms of magnesium for years. (It's important for lyme patients)
-These tests were after a little while of supplementing with glutathione (!), OTC methylfolate, methyl b12, and a few other of the basic (5?) generalized "methylation protocol supplements - I need to review again what those were.

I'm attaching the second page of the doctor's notes, which includes the suggestions and/or rx's.

Simply put, her suggestions were pretty much all "band-aids" for directly addressing some of the low levels shown in the bloodwork, but no indication (that I could tell, and I definitely questioned her) about any real understanding of the complexities of the methylation defects or how to address the UNDERLYING issues....

I took the 15mg methylfolate rx, and tried the testosterone cream too, but didn't notice anything from those that I could tell. I've dialed the methylfolate back, and it doesn't seem to make a big difference that I can see. Maybe tryptophan could be useful.... It "seems" to me that the glutathione was probably helping, but I understand that most people are highly against it for a few reasons. To me, this is all just more proof that I need to have a LOT more knowledge about this stuff, and hopefully a doctor (?) who does too...

I'm honestly still just trying to figure out exactly where to START with Freddd's stuff. (Like an "introduction", and or explanation of exactly who is protocol is intended for, what ""zones"" are, etc. !

Thanks again, and look for a PM from me....
 

Attachments

  • IMG_0262a.jpg
    IMG_0262a.jpg
    408 KB · Views: 10

Journeyman

Senior Member
Messages
193
Hi Again!

Thank you again very much for the info/suggestions! (( I AM going to P.M. you, by the way...)) To answer s few of your questions:
-I've been supplementing with the better forms of magnesium for years. (It's important for lyme patients)
-These tests were after a little while of supplementing with glutathione (!), OTC methylfolate, methyl b12, and a few other of the basic (5?) generalized "methylation protocol supplements - I need to review again what those were.

I'm attaching the second page of the doctor's notes, which includes the suggestions and/or rx's.

Simply put, her suggestions were pretty much all "band-aids" for directly addressing some of the low levels shown in the bloodwork, but no indication (that I could tell, and I definitely questioned her) about any real understanding of the complexities of the methylation defects or how to address the UNDERLYING issues....

I took the 15mg methylfolate rx, and tried the testosterone cream too, but didn't notice anything from those that I could tell. I've dialed the methylfolate back, and it doesn't seem to make a big difference that I can see. Maybe tryptophan could be useful.... It "seems" to me that the glutathione was probably helping, but I understand that most people are highly against it for a few reasons. To me, this is all just more proof that I need to have a LOT more knowledge about this stuff, and hopefully a doctor (?) who does too...

I'm honestly still just trying to figure out exactly where to START with Freddd's stuff. (Like an "introduction", and or explanation of exactly who is protocol is intended for, what ""zones"" are, etc. !

Thanks again, and look for a PM from me....

Hi Spaceboy3000,

I'd recommend looking at these sources to get some key understandings.
http://mthfr.net/ (Dr Ben Lynch) whose now expanded his focus into the other parts of the methylation cycle well beyond MTHFR. Having just checked out the SNP of interest in your case (MTHFR1298C) here: http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/
it seems that its only of concern if you also have a mutation on the MTHFR677T gene which you are lucky enough not to.

That link you posted with the SNP alleles etc. isn't 23&Me so how come you've titled the thread 23&Me? Anyway to your benefit it seems a lot more detailed than the results you get with a Genetic Genie interpretation of your 23&Me results - and this is not meant as a criticism in anyway for the fantastic service they provide for holders of 23&Me results... I know I've certainly made some good headway with their interpretations...

Anyway the Detox mutations seem to be the ones that eluded my attention what with being busy at work etc. from May when I got my results. Since I've had some time off, however, I've been able to analyse the detox panel results which includes that homozygous CYP1A2 you have lurking there.... Anyway I suggest you take a look here http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=C&unit_code=89401 for a succinct description of each of your mutations.

That CYP1A2 means you're going to be more sensitive to coffee, panadol and have trouble detoxing xenoestrogens which could be upsetting your methylation cycle to boot. The solution: Eat plenty of cruciferous vegetables but check you don't have a CBS, SUOX mutation first - these seem to result in sulfur intolerance and those vegetables are high in sulfur.

You also have a homozygous mutation on your CYP1B1 R48G and a heterozygous mutation on the CYP1B1 L432v which means you are prone towards converting estrogens to 4-hydroxy estrogens which bind more strongly and exert a higher estrogenic effect (gynecomastia, low libido etc.) than the desirable 2-hydroxyestrogens which CYP1A2 helps with.

CY2D6 is for xenobiotic detox again like CYP1A2 so avoiding plastics (food containers, seating, clothing?) would be a key step along with the cruciferous vegetables (need someone to confirm whether your CBS 360A mutation is relevant to potential problems with the veges first)

Oh and look up any posts by Caledonia: she has both linked us to the latest Dr Ben Lynch videos, and her signature block has a fantastic link to the 'heartfixer' site which explains each mutation usefully and thoroughly for you to act on...

All the best!