This is topic Who here has been working on Methylation issues and making good progress? in forum Medical Questions at LymeNet Flash.

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Posted by Tammy N. (Member # 26835) on :
Would love to hear from you.

Posted by sk8ter (Member # 8671) on :
Hey Tammy I am just starting ..just had the Dr. Yasko test, MTHFR tests and others and working with a dr that is Dr Yasko's protegy..Am very excited but it is very expensive.
Posted by Tammy N. (Member # 26835) on :
Thanks for responding.

I'm finding it difficult to find a good, knowledgeable doc. How did you find one?

Can I ask....other than Yasko's test and MTHFR, what other tests did you have done?

I'm trying to wrap my head around all of this. I'm finding my sensitivity to sulfur is increasing. Very frustrating. Do you have the sulfur issues also? Just curious.

What was it that made you sure you had methylation issues? Again, just curious.

I think this is a big issue for a lot of us.

Posted by sparkle7 (Member # 10397) on :
I just decided to try the simplified protocol by Dr. Rich VanK without doing all of the testing. I take it every other day or so. I started getting rib pain after I started it. It may be a release of toxic metals? I don't know...

I still continue it gradually. I don't think it's an overnight process. I use dowsing. The doctors in the area were exorbinantly priced & I didn't trust that they really knew what they were doing.

Sometimes, trial & error work but you have to be into it. If you feel like sulfur is bad for you - why not cut it out & see how you feel?

I don't know if it's a miracle cure. I try to do the best I can on my own. It may help the body to detoxify - so, I take stuff like chlorella, psylium & diatomateous earth.
Posted by Tammy N. (Member # 26835) on :
Posted by Tammy N. (Member # 26835) on :
Posted by Tammy N. (Member # 26835) on :
Posted by soccermama (Member # 35101) on :
Tammy, I know that Nefferdun started working on it last year and has made great progress. You may want to PM her.
Posted by Tammy N. (Member # 26835) on :
Thanks soccermama. I was hoping she would weigh in. I sent a PM several weeks ago but she hasn't had a chance to reply yet.
Posted by Razzle (Member # 30398) on :
Yes, I had the Yasko panel and also the Genova Diagnostics Detoxigenomic Profile test done. That test looks at other genomic variants that affect phase 1 and 2 (liver) detox.

But their recommendations are all the same as Yasko's...basically, lots of antioxidants, brassica foods (cabbage family, which I can't eat due to the sulfur/sulfite sensitivity), and avoidance of artificial food additives (which I avoid as much as I can anyway).

I'm still struggling with the sulfite sensitivity too...but have recently had NutrEval tests done and it showed I was very deficient in zinc despite supplementing with 50mg/day.

So I've just started a new supplement containing zinc and some other trace minerals in which I also am deficient, and am hoping that supplement will help. Zinc is one of the supportive minerals needed for sulfite processing...
Posted by Tammy N. (Member # 26835) on :
Hi again Razzle. Just a thought... have you considered taking Core (it contains zinc, among other things).

My zinc is low... did not realize this is one of the minerals needed for sulfite processing!! Thanks for sharing that tidbit. Good to know. I will be sure to stay on top of that.
Posted by Razzle (Member # 30398) on :
No, I can't do has sulfites in it (mineral citrates) and Magnesium glycinate gives me heart palpitations...

Magnesium, iron and B12 are also needed for sulfite processing.
Posted by Tammy N. (Member # 26835) on :
Didn't realize mineral citrates contain sulfites! Boy, it's a never-ending list that contains either sulfur, sulfites, sulfates, etc.
Posted by Razzle (Member # 30398) on :
There are 6 different sulfites. You may not react the same to all 6, and may not react at all to some of them. Apparently, I don't react as badly to maltodextrin as some others with sulfite issues, but my reaction to mineral citrates and citric acid is severe. But I don't react to all citric acid. I think it is only the citrates/citric acid that is derived from corn (which is a large majority of the citrates/citric acid).
Posted by momlyme (Member # 27775) on :
I see so many similarities to the MTHFR and mercury poisoning, I don't believe being low on zinc or glutathione has anything to do with genetics... I think it is because of mercury!

I mean maybe some people are more genetically inclined to not detox mercury well... but it's not just genetics.

We never tested for MTHFR because when I read about it, all the things I read about it point me back to what I have read and learned about mercury poisoning and I just don't buy the theory.

There are studies of genetically testing autistic children and a control group of non-autistic children and there are just as many 677T alleles in each group. Then there are studies saying that 677T is the allele that makes you more susceptible for autism. It depends on who does the study and there are thousands of them.

We tested 4-3-53 HLA haplotype which is supposedly the worst of the worst gene for detoxing mold and we got well... so focusing on genetics or bad genes does not help anyone to get well. (I know this is not the same as MTHFR - just saying... it's a similar situation of genes saying someone can or cannot detox)

I see so many people (not just on LN- I belong to other support groups too) focusing on genetics and harping on how they will never be able to get well because their genes don't allow them to detox. I wish they would get off the genes and onto detoxing!

Treat toxicity. Forget genetics.

We used Dr. K's list of supplements from page 18 of this document
to supplement with and we combined that with the round the clock oral doses of DMSA and then DMSA and ALA to pull mercury from the brain. (amalgam illness - andrew hall cutler) This process may take a couple of years or more depending on how mercury toxic you are. I am still doing mercury detoxing... and will continue until I feel no effects from the oral chelators I use.
Posted by Tammy N. (Member # 26835) on :
Hi momlyme - I totally hear what you are saying. But my issue that I keep running into is my inability to tolerate the necessary sulphur supps in order to detox (chlorella, DMSA, DMPS, ALA, etc....). These are the things that get most people well. I can't tolerate any of them. It's primarily the sulfur sensitivity that throws me over the edge. That's the only reason I'm pursuing this further. I want to help my body create whatever detour it is I need in order to be able to tolerate sulfur and gain all of the magical benefits it has to offer.

I see this as one of my main stumbling blocks. But I do believe there are ways to get around it. Molybdenum has helped a lot. But I think there is more to the puzzle that needs to be filled in for me.
Posted by ukcarry (Member # 18147) on :
I agree that mercury will deplete glutathione, but if you are found to have an absent gene for glutathione, that is surely relevant too.
Posted by Razzle (Member # 30398) on :
I'm not posting to focus on the genetics, I'm posting to educate people that sometimes, genetics DOES inhibit healing!

Furthermore, Dr. K. and Dr. Yasko both talk about genetics preventing people from being able to detox the metals. They both present cases in which the people were sick, started their respective protocols (Dr. K's HPU/KPU Protocol, Dr. Yasko's Methylation NutriGenomic Protocol), and then finally were able to detox the metals and get well.

I'm in the same boat as Tammy - I cannot tolerate the sulfur compounds needed for good detox. So yes, in our case, the genetics absolutely matters! Because knowing the genetics helps us to choose the correct nutrition to compensate for the genetics so we can have a greater chance of getting well.

We need all the help we can get to overcome Lyme/coinfections and all the other issues that come along with it. If compensating for our genetic issues helps, then I think it is good and worthwhile trying!

Just my humble opinion...
Posted by Razzle (Member # 30398) on :
The 4-3-53 HLA haplotype is a completely separate issue to the methylation genomic variants. Detoxing protocols will help those with the HLA haplotype issues - in fact, these folks probably benefit greatly from detox. protocols.

MTHFR prevents the detox. of mercury. Looking at most mercury detox protocols, one may find many similarities to the nutrients needed to compensate for methylation issues (especially, zinc, antioxidants, binders, chelators, etc.).

MTHFR does not cause trouble with sulfur tolerance chelators containing sulfur will help these people even if they have an MTHFR mutation.

SUOX and CBS are the mutations that cause sulfur tolerance issues.

Mercury can suppress MTHFR even in those who do not have a mutation. This is I think one of the reasons mercury causes so many health problems. So yes, it makes sense that the symptom lists for mercury and MTHFR would be similar...
Posted by Tammy N. (Member # 26835) on :
This is a great conversation we're having.

It's coming clearer to me that we need to really try to get rid of the mercury (I've already known this but somehow these last few posts have brought home the message that mercury poses such huge issues...especially for those of us with detox issues).

For those of us with sulfur issues, I think the best choice is probably EDTA. I still have a container of the suppositories. I'm going to discuss this further at my next doc appt.

Because I keep hitting the wall with the sulfur thing, I have not been steadily trying to get rid of the mercury. This needs to be bumped up on my priority list. My test results for mercury were sky-high in hair, blood and urine in the past.
Posted by Razzle (Member # 30398) on :

The mercury will come out on its own with the methylation protocol, at least according to those who have gotten that far... So you probably mostly need to focus on binders. But watch out for charcoal - it may contain sulfites. So might chlorella...
Posted by Tammy N. (Member # 26835) on :
Thanks Razzle. That makes sense. You've been such a help to me. Really appreciate your posts.
Posted by Tammy N. (Member # 26835) on :
Posted by GiGi (Member # 259) on :
If the mercury is found in the hair with the hairtest, you are detoxing it just fine. If it is in the hair, it is on the way out. That is one reason why we do hair tests.

If you are using Doctor's Data hairtest, you also get a good indication as to your mineral status. Your doctor should be able to interpret that to see what you are lacking in the good minerals, if any.
Posted by Tammy N. (Member # 26835) on :
Thanks Gigi. That is a good way of looking at it.....that if it's in the hair, that means I am detoxing.

I haven't had a hair test done in 2 or 3 years. At some point soon I think I'll do it again. Would be nice to see where my minerals are. And hopefully metals will be lower.
Posted by Annelet (Member # 13503) on :
Tammy, if you have such issues with Sulphur, it may be that you have CBS gene mutations....these upregulate the CBS pathway, producing Ammonia. One of the many Methylation genes.... it is MUCH more than MTHFR.
Molybdenum supports the CBS pathway.
If you are thinking of getting the Methylation genes checked..... 23andme have a special on, starting today. $99 instead of $300. No doctors order equired,. saliva sample. Takes 2-3 weeks BUT what you get is raw genetic data and you have to 'translate' it
There is help on the Internet to do this.
I had the Yasko. My son had the 23andme.
Definitely a ood idea at this price.
Posted by gigimac (Member # 33353) on :
Annette does the 23&me DNA spit kit tell u if your detox problems are from methylation defects? I really want to get this test done.

thanks for sharing the info about the sale!
Posted by Tammy N. (Member # 26835) on :
Thanks Annelet. Did you think Yasko's test was much better? Plus, they give you guidance on what supps to take based on your findings, right?

Or do you think the other test is just as good....and does it seem possible to decipher what's what and know what supps you will need?

Posted by Annelet (Member # 13503) on :
The Yasko test is $500, done on a dried blood sample. No doctors order needed. Takes around 3 months. They take the raw genetic data and decode it for 30 of the main genes to do with the Methylation pathway. They provide you with a table listing the genetic results and 4 e-books on DVD explaining all about Methylation issues and how to deal with them.

The 23andme test is done on saliva. Usually costs $300.... now on sale at $99. Not sure how long for. No doctors order required. Takes 2-3 weeks. What you get is a few genes decoded, but the rest is given as raw data and you have to decode it for yourself. There are Internet sites that can help you do this, and I know of one person who does this as a job and charges a small fee. You will get all but about 4 of the same Methylation genes that Yasko tests for PLUS a whole lot of other genetic information.

All of the yasko information that she provides in the test is freely available on the Internet. You will have to do your homework, but there is a lot of information available to help.

Comes down to cost and time. At $99 I would say the 23andme is well worth doing..... even if you end up paying $50 or so to get the translation done ( if you find it too difficult ) it is still way cheaper than the yasko, and the results will be available quicker.
Posted by Tammy N. (Member # 26835) on :
Thanks for this info. Unless someone else raves about a different test, I think I'm leaning toward Yasko's test , especially if 23andme does not include 4 of the methyl gene tests.

This was helpful. Thanks so much for sharing.
Posted by Razzle (Member # 30398) on :
Yes, I agree Tammy. Yasko's test is superior for methylation specifically. And she does include information on how to interpret the results.

Although now that I've had the Yasko test panel, given the sale on the 23andme test, I'm contemplating getting that one done too!
Posted by Annelet (Member # 13503) on :
Check this out.... the differences between the SNP's tested for by Yasko and 23andme
Posted by Razzle (Member # 30398) on :

Thanks for posting this link!!! It is fantastic!!!
Posted by gigimac (Member # 33353) on :
I got the 23andme test cause I couldn't quite see paying $300.00. I am looking for mold related stuff as well. I am really excited to get the tests and get my results. I just hope I can translate it.
Posted by Elaine G (Member # 20735) on :
Dana on 23andme has done a spreadsheet taking the Yasko snp's and coverting them into 23andme info. It is very easy to use. You just put your results in by inquiring on your rs numbers.

I did both 23andme and Yasko's tests. Both are indentical in results.

I originally did 23andme about 1 year ago for genealogical reasons. I was totally amazed by all the health reports they give.

It is well worth the price.
Posted by sparkle7 (Member # 10397) on :
Just be aware of the fine print for the 23andme test! You sign away all rights to patent your DNA for whatever reasons they may want to use it for now & in the future.

It's a good deal but just be aware of what you are giving away. No one does anything for free these days...
Posted by Pam08 (Member # 19203) on :
Bumping this up to see if anyone is seeing progress with the methylation/MTHFR treatments.

I just tested positive for the MTHFR mutations and will be starting treatment after I see my LLMD again next month. So I am definitely curious to see if this has helped people at all.

Posted by Tammy N. (Member # 26835) on :
Hello. Just wanted to check in and see what progress has been made with some of my friends here.

I still haven't taken the plunge. I'm leaning toward Yasko's test. I called today and was told the test is $500, then there is an additional $500 charge for the doctor to interpret all of your results and put it into a binder for you to follow. This was the number I called on I still want to call Yasko's group directly and see what they say. Or if now they offer the interpretations (hopefully at a lower fee).

My folic acid is high in my blood. Which is odd, and apparently not good. I also have weird issues tolerating B vitamins. And darn sulfur keeps tripping me up. I want to get to the bottom of all this.

I've promised myself that I will figure out which testing I am going to have done this month. Enough is enough.
Posted by tick battler (Member # 21113) on :
Thank you for starting this thread. This is an area I have yet to study but I know it is important for my family. My son had some blood work done and one of the MTHFR genes was problematic. I think only two were tested for...I don't remember which one it was and I haven't had time to read more about it and understand it except that I think I was told it shows his methylation cycle is not working right.

Our ART practitioner today was recommending that we get genetic testing done on the kids. I will be interested to hear which you choose.

Posted by birdie67 (Member # 35994) on :
I just got my results back from the 23&me test. I am negative for the MTHFR gene but positive for the CBS/BHMT gene.

I am learning about what it all means, it's hard to understand it all.

I know that the CBS gene makes me sensitive to sulfur.

It's really interesting and the more I am leaning about it the more I am connecting the dots.

I have an appt tomorrow with my LLND so it will be interesting to see what he says about the results.
Posted by Razzle (Member # 30398) on :
There is no extra charge for interpretation if you order the test kit directly from Yasko's website:
Posted by Robin123 (Member # 9197) on :
I did the detoxigenomic liver bloodtest through Genova Diagnostic Labs in NC - it cost $400 a couple years ago.

Came with full explanations of what happened genetically with 8 drains in Phase I liver detox and 4 major drains out of 10 in Phase II, including the glutathione and methylation pathways. I thought it was very clear.

I am a difficult detoxer, in that I flunked both glutathione and methylation pathways - yes, it is possible to do that and still be present and breathing and walking and doing goofy things around town...

I am still detoxing by sweating in an FIR sauna every 5 days and slowly becoming less chemical sensitive.
Posted by Razzle (Member # 30398) on :
I've had both Detoxigenomic and Yasko's tests.

The Detoxigenomic test looks at a small part of the methylation stuff (just a few SNP's), and some of the other liver detox stuff.

Yasko's test looks at about 30 SNP's in the methylation cycle (& related enzyme pathways).
Posted by Tammy N. (Member # 26835) on :
Thanks for replies.

What I'm curious to know is..... who has found the testing to be invaluable....and the suggested treatments are working successfully?

If people are still going round and round and not really seeing any significant improvements, I'd like to know that also.

I'm just trying to figure out if there are any TRUE solutions to be had. (As in a complete health turn-around.)

Posted by Tammy N. (Member # 26835) on :
Up again.....

Can anyone speak of stellar results since addressing methylation issues?
Posted by Elaine G (Member # 20735) on :
For those who did 23andme, you can upload your genome to Genetic Genie and they will give you your results in Yasko format. After you upload your genome will be deleted and the results will appear. It takes a few minutes.

There are also a few pages of comments on your specific outcome in the report. It's actually an informative report.

There is no cost for this unless you want to donate.

You first have to download your genome from 23andme to your computer, then you can upload to many DNA programs.

Genetic Genie
Posted by Pam08 (Member # 19203) on :
I would also like to know if anyone is seeing any improvement by treating the methylation problems. I just tested positive for two copies of the A1298C gene. I was only tested through Quest so it wasn't the full Yasko panel. It just checked for the C677T and the A1298C variants.

My LLMD is convinced that treating this will be a game changer and may be the missing link for me but I am not so confident that this will be the answer. I just haven't seen anyone say that this treatment has been a game changer for them.

So I would also really like to know if anyone is seeing good progress with the methylation stuff.
Posted by gigimac (Member # 33353) on :
I too would like to know who has or hasn't benefited from addressing genetic issues. I am homozygous for CBS and hla and maoa and a few others are hetero.

Trying to fix these could be a lot of work. I tested myself at home and I do have high sulfate levels. I am starting on yasko's book and I just wonder if all this will help.

My llmd really didn't have an understanding about this and could not help me with my new found info.
Posted by Tammy N. (Member # 26835) on :
Posted by Tammy N. (Member # 26835) on :
No one is doing great I guess....
Posted by birdie67 (Member # 35994) on :
Only been addressing mine for a week, so no info yet. I did have a 2 1/2 hr talk with my LLND last week and learned a lot more about it. Still confusing.

Will keep you updated to the progress (or lack of) that I make.

It seems very hard to find people that have had success treating it.

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