Newbie - simplified protocol or full monty?

[caledonia]

I thought about this some more. This is what I suggest - get the urine sulfate test strips. If your urine sulfate is high, then do the CBS protocol to lower sulfur and ammonia. Then do Rich's simplified protocol.

This is the simplest, cheapest way I can think of doing it.

Standard lab testing - forget folic acid and B12 tests, they're useless. Vitamin D is good. Thyroid followup test. HDRI methylation panel if you can work it out.

 

[Johnmac]

Thanks for your thoughts Caledonia.

16 months isn't long for the Cutler approach, which can take several years (typically 4). The best follow-up testing is chelation - which produces (hopefully mild) mercury symptoms so long as mercury is still there: my symptoms remain strong, so I assume I still have plenty of Hg.

Yes, I'm thinking I'll have to stay off chelation till I sort the methylation a bit. I'll try the basic Rich protocol at Xmas, when I'm in civilisation & can get the supps. (Now in Cambodia.)

Do you think a SUOX (or CBS?) variation would interfere greatly with my practising the Rich protocol? Don't know if I have one - but my sulphur problems are large.

If so, how would you suggest I proceed? I can only get the MTHFR test in Australia, not the others so far as I know. (No methylation biochemistry panels either, so far as I can find.) Sending samples overseas to Vitamin Diagnostics from Australia is bewilderingly bureaucratic & complex, so I don't think I'm up for that. (I assume Yasko wd be similar.) Paying my phone bill is about as much bureaucracy as I can tolerate these days.

One poster here says the Rich MTHFR protocol will look after most of the other variations too. Do you agree?

Yes, I've been schooled by the Cutler people so am versed in the low & slow approach - which seems to be the philosophy here too.

Thanks again.

Johnmac
Some random thoughts:

After 16 months on Cutler, I would think all the mercury would be out? Have you done any follow up testing to see what your levels are?

In general, I suggest stopping chelation and getting back to some sort of baseline before starting methylation. Methylation will cause more toxins and metals to come out, which may make you feel worse.

Could your friend who did Rich's protocol supply you with some samples so you can try it out and see your reaction?

In general, there is a middle ground between Rich's simple protocol and Yasko. With the sulfur problems, you may want to do Yasko testing vs. 23andme, because 23andme doesn't cover SUOX (sulfur).

Yasko says to treat the SNPs in this order SHMT/ACAT, CBS, MTHFR, MTR/MTRR, BHMT, MAO A, SUOX, NOS, VDR.

What I'm doing is treating CBS by reducing sulfur and ammonia, then I think I may be able to do Rich's protocol after that.

The HDRI methylation panel is a good idea to do first get a functional reading of your methylation cycle. The SNPs are just tendencies, and may or may not be activated. If your methylation is indeed messed up, then you can do SNP testing to get a roadmap of improving things. The HDRI panel can also be run every so often after starting methylation to see if things are improving.

In general, with supplements always START LOW and GO SLOW. This means start with a tiny fraction of the recommended amount and then very gradually, as tolerated, work up to a full dose. If you experience adverse reactions, then STOP, let everything clear and and restart at a much smaller dose. This will keep you from having a major relapse.

 

[Johnmac]

Thanks for that ukxmrv.

I've found the MHFTR test in Australia, but, yes, I doubt it's under (Government) Medicare.

I can't find any of the other tests there - e.g. CBS, SUOX.

I'd be delighted if anyone can correct me on either point.

Thanks for the blood test ideas - I've added them to the list.

All the best...

Hi John,

I don't think that any of the SNP tests are aviailable under the Australian medicare system. Hopefully someone who has had some will be able to correct this and chip in with where they were done and how.

What you might find useful and hopefully free would be testing for things like

B12 blood levels
Folate blood level
D3

Others might be able to add from a list of tests that they have had under the standard Australian system

 

[Johnmac]

Thanks place - & well done on your progress.

I can't contemplate Fredd's protocol at present, as I'm barely getting my head around Rich's - which I'll try first.

But anything is possible after that.

 

[Johnmac]

Thanks Lucy.

The Australian MFHTR testing I found is with http://www.mygene.com.au/our-services/nutrigenetic-tests/folate-metabolism-genetic-test/

Do you know of others?

Or of Australian tests for other variations such as SUOX & CBS? (Can't find any of these to date.)

Good news (& surprising) that the MTHFR is available under Medicare.

Thanks again.

O and it is possible to have the MTHFR 677/1298 SNP blood test done here under normal Medicare, doctor just needs to request it!
And as you know blood B12 and Folic Acid levels are standard tests but are not fully accurate for these methylation requirements!
And the Vit D panel blood tests are also standard bloods here too!

 

[Johnmac]

Oh, and by the way, how can I work out what SNPs I should test for?

For example I have problems handling sulphur foods, have psoriasis, and have always struggled with energy. Would those symptoms suggest testing for this SNP or that?

I'd like to get as close to the mark as possible from the start.

Thanks again...

 

[LucyS]

Hi Johnmac,
My doctor just requested the MTHFR test along with other standard bloods that are all covered by Medicare, not sure if me being on a Disability Support Pension had anything to do with that? I do know that you can also get it done through Healthscope Pathology Functional Lab and it costs I think about $50? You'll need a Healthscope Practitioner Request Form for that from a Functional/Integrative Doctor or a Naturopath etc That Lab does a lot of other useful Functional Tests, some are sent off to the US Geneva Testing Lab others are done at their lab in Melbourne. I'm not aware of being able to get any other genetic SNPs done here, the only option I think is to get them done in the US maybe the 23andme saliva test or not sure if you can do the Yasko panel from Oz, hope that helps! Good Luck,
Lucy

 

[LucyS]

John why don't you get the MTHFR test done as a starting point, and then start the Simplified Methylation Protocol slow and low doses, as I think most do anyway, and gradually increase to the recommended dosages according to your reactions and see how you get on, if there is no improvement then maybe consider looking into further more extensive testing??

 

[Johnmac]

Thanks again Lucy. I'll drop Healthscope a line & see about doing a test, & what other SNP tests they offer, if any.

There is a Healthscope attack site:

http://www.paulgolding.id.au/THE_HEALTHSCOPE_FRAUD/PublicPages/TheHealthscopeFraudHome.html

which claims fraud & incompetence - but so far as I can see it's only put together by one unhappy ex-client. The claims don't seem to be any worse than those against any medical practitioner or lab. E.g. that they support various functional medical associations, & have set up labs in medical clinics - which I don't find especially heinous.

How did you find their service?

I suspect that Medicare will cover this for everyone if it covered it for you - but will check.

Your suggestion to start with MTHFR is a pretty good one; I'll likely end up doing that.

I haven't found anyone in Australia who does methylation panels (biochemistry) which I'd prefer. For both types of test, sending samples overseas from Australia seems dauntingly bureaucratic & complex - thus my interest in an Australian provider.

Thanks again!

John why don't you get the MTHFR test done as a starting point, and then start the Simplified Methylation Protocol slow and low doses, as I think most do anyway, and gradually increase to the recommended dosages according to your reactions and see how you get on, if there is no improvement then maybe consider looking into further more extensive testing??

 

[LucyS]

I don't believe Healthscope do any other SNP testing John, only the MTHFR, and there is no way to get Methylation Panel biochemistry tested here in Australia! Believe me I've tried!!
I have had various tests done through Healthscope as requested by a doctor I was seeing at the time who is an Integrative Doctor, I then found their website with all the other functional tests they offer!

 

[caledonia]

What SNPs to test for: Yasko's methylation SNPs are the gold standard. You can get about 70% of the same SNPs from a 23andme test. Those are your two choices.

I have gone the 23andme route. It's cheaper than Yasko, but the SNPs are listed in another system called rs numbers and you have to convert it to Yasko-speak yourself. Luckily, it's gotten a lot easier with Genetic Genie (the link is in my signature). Then you take your results and go to Heartfixer to come up with a treatment.

23andme is a saliva test, and you don't need a doctor's approval. However, saliva is not quite as accurate as blood, but still pretty good at 97%. 23andme does not test SUOX. However, the treatment for SUOX is the same as CBS, but you would want to be more stringent.

I've had a real good look at Rich's simplified protocol and it does cover all the SNPs. The only problematic one is CBS. According to Rich (and I think this was just a guess based on his study results - they didn't test the SNPs of any participants), CBS should resolve itself in about 6 months if you start really low and go really slow. I don't agree with Rich on this point.

In my experience, I can't take B12 at all (either hydroxycobalamin or methylcobalamin). I was experimenting again just this past week and had problems with 4mcg! It causes excitotoxicity. This is due to the CBS drain effect. So I'm treating CBS first, then I should be able to tolerate the rest of the protocol.

So the treatment for CBS is to reduce sulfur and ammonia in the diet, and to take supplements to assist with that. You check your progress with urine sulfate strips (and an ammonia blood test if you can afford it).

I assume you could also check progress by testing how you react to B12.

 

[Johnmac]

Thanks so much Caledonia: that's a nice tour d'horizon.

With a fair bit of brainfog & fatigue, I find the Yasko approach a bit much to contemplate. Also the cost of all those supps would make it impossible, I think. So I'm tending to the simplified Rich protocol at present. I'm delighted you found that "Rich's simplified protocol...does cover all the SNPs" - except CBS in your case. I've never had a problem with B12 (tho I haven't tried the m-B12 yet) - so I'm hoping that I can attack CBS (If present) with the Rich protocol.

As for tests, 23andme tells me saliva tests from Australia are fairly easy, don't spoil, etc - so I'll probably do theirs. (Yasko would be better, but I'm guessing hers is a blood test, which will be troublesome to send overseas.) Thanks for the tips on Genetic Genie & Heartfixer re interpretation.

I suspect I have a SUOX problem, but if treatment is the same as for CBS (which I assume 23 do test for) I'll just apply that.

You said "the treatment for CBS is to reduce sulfur and ammonia in the diet, and to take supplements to assist with that". Is there a site where the treatments for all the variations are listed in simple form? (Again, Yaslo's lists are intimidating - & too expensive.)

The test I would really like is the methylation panels, but I can't find that in Australia. (Sending it overseas from there requires bureaucracy & other procedures I'm not really up to.)

Thanks again for the advice & knowledge,

John

 

[Johnmac]

One more question:

Can I get all 5 of the simplified protocol at the one place?

I see Yasko is missing folinic acid, & iHerb has some but not all....

 

[LucyS]

Hi John,
From memory I got the MethylMate B and HydroxyB12 drops from HolisticHeal(Yasko) and the rest from iHerb!

 

[Johnmac]

Thanks Lucy.

While we're at it, how long ago did you start the protocol, and how successful has it been?

 

[LucyS]

Well I haven't actually started it yet John, I'm still waiting for some other results from Healthscope/Geneva to get a baseline idea of nutritional values and then I intend to start it all in the New Year! So we'll see how it all goes then!