Just started Rich's protocol, have some questions

[bsw]

So after having to wait 2-3 weeks for my supplements to arrive in Australia (ordered from holistichealth.com, customs took forever) I have finally started on the methylation protocol. While I am extremely excited about the potential results, I have a couple questions.
Other background info, im 20 y old, male, fairly healthy diet (no gluten, sugar or diary), moderately active (relative to my condition) prior to starting the protocol, I have had chronic fatigue for at least 2 years, possibly up 6-8, only other ailment found in me in the past 24 months was bacteria that required anti-biotics. Cant remember what bacteria/anti-biotics.

I am currently taking 1 capsule of each of the four supplements in the current methylation protocol.

Anyway.

1. I seem to have developed flu like symptoms after starting the protocol. My energy levels have dropped even further and my cognition has gotten even worse. At the moment I am assuming that this is my body adjusting to the supplements / the die off effect occurring. Is it possible however that I have just coincidentally come down with something around the same time I started the protocol? If it is die off / adjustment how should I reduce the supplement intake to avoid the side effects?

2. Are there any dietary / alternative factors that could influence the protocol? Is there anything I can do daily to help speed along the process / avoid pitfalls?

3. Are there any tests that will help guide me in my recovery? I see the methylation pathways panel being talked about a lot, but that seems to only be available overseas and would take months to get back to me. Are there any other tests worth getting to help shed light on the issue? Also should I get a 23andme test as I can get that done in Australia within a month.

4. How long should I stick with the protocol without seeing improvement before quitting?

5. Fredd's protocol seems to be a more comprehensive way to deal with methylation problems. If Rich's protocol does not give me the improvements I want, would Fredd's be the next step? If so, how easy is it to acquire the supplements for Fredd's in Australia?

Thank you for reading and I hope to God this works.

 

[drob31]

I'm not an expert on methylation by any means, although I've been reading allot.

Have you ever considered that you could be over metyhlated? If that's the case, niacin (nicotinic acid) would help.

 

[xrunner]

Hi @bsw and welcome to the forum.

Although it's not clear what exactly you're taking, at what dosages and since when, I'll give my own view based on my own experience of the protocol.

1. If you've been on the protocol for a few days, the reaction is likely to be sensitivity to some of the nutrients.
The multivitamin has many nutrients and that could be the culprit. The best way to go about it is to introduce one at the time and see where the problem is from. I personally couldn't tolerate the multivitamin suggested so I replaced it with a multimineral and that and the protocol worked fine for me.

2.Yes, lack of aminoacids/vegan diets could hinder progress. Also if your diet gives you enough soluble fibre for at least a daily bowel movement that can help you excrete toxins more easily.

3.The methylation panel is ideally the best. However you could have an idea of your methylation status by testing only for s-adenosylmethionine (SAMe) and s-adenosylhomocysteine (SAH). If the ratio of SAM to SAH is less than 4.5 that would be an indication of slow methylation.
I'd test before starting the protocol and then at a later stage to check on progress but I'd wait at least six months before retesting.
Regarding 23andme, I had a similar test but I didn't find that kind of testing helpful for my recovery.

4. The best way to judge improvements (or lack of) is trough blood tests i.e. checking your methylation status and glutathione levels, rather than subjectively or guessing about things, especially if you're not experiencing clear improvements or have side effects.

This was key in my own experience. You can easily find that your methylation has normalised but your health hasn't really improved.
Then it's not a question of this or that protocol, under/over methylation etc. but of looking at other critical factors.

If you read post n.6 (thread link below) you'll have an idea of what other problems people who didn't improve had e.g. chronic infections, mold sensitivity, mercury toxicity etc.
You'll have to address these other roadblocks to see a turnaround in your health.
http://forums.phoenixrising.me/index.php?threads/methylation-study-and-c4a.14633/

5. see 4.

Best wishes.

ps: This is the pilot study doc of the SMP and gives a good idea of the potential of the protocol
http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf

 

[Sushi]

I am currently taking 1 capsule of each of the four supplements in the current methylation protocol.

This is meant to be the "target dose," not the starting dose. Many of us were not able to tolerate those doses for months. This is a possibility that could explain your symptoms.

Personally, I had to start with about 1/8 or 1/16th of the target doses (forget exactly as it has been so long). I reacted to a higher dose, had to stop for a few days and start over at a tiny dose.

Sushi

 

[bsw]

3.The methylation panel is ideally the best. However you could have an idea of your methylation status by testing only for s-adenosylmethionine (SAMe) and s-adenosylhomocysteine (SAH). If the ratio of SAM to SAH is less than 4.5 that would be an indication of slow methylation.

I dont seem to have easy access to SAMe and SAH tests in Australia. My local pathology had no idea about where I could go to get these tests. Can anyone help?

 

[xrunner]

Thos are part of the methylation panel and I would have thought that at least SAH would be available but obviously not.

The best next option, in my opinion, would be testing for plain Homocysteine and Methylmalonic acid (MMA). If the first is elevated it can be an indicator of low methylation, whilst an elevated MMA can point to a B12 deficiency. If both were elevated then it would be more likely that there is a partial methylation block.

I'd also look for whatever blood test is available for Glutathione (GSH). Rich was of the opinion that only plasma GSH was a good indicator of methylation status but that's not commonly available.
I personally think that any measure of GSH would be better than nothing. It would add more info that you can monitor over time.

 

[bsw]

And are there any vitamin / mineral tests that could help me out while I go through the process? I see potassium being thrown around a lot.

 

[xrunner]

You can test your potassium and other electrolytes through a simple blood test through your GP.

 

[bsw]

How long should I let the b12 dissolve in my mouth? I usually last say, 15 minutes. I see people talk about it lasting 40 minutes to an hour. Am I doing it wrong?

 

[Sherpa]

Bsw, the longer the better. 45 minutes would be good to aim for. 1 hour is rockstar. My method: hold under tounge, no sucking, no swallowing, no talking, no moving mouth. Lie and meditate in the morning right after waking.

 

[starlily88]

I am currently taking 1 capsule of each of the four supplements in the current methylation protocol.

I agree with Sushi who has apparently done this protocol. I am researching this to do myself. It was recommended to take one supplement at a time by itself with tiny dose.

 

[starlily88]

personally couldn't tolerate the multivitamin suggested so I replaced it with a multimineral and that and the protocol worked fine for me.

I know this was back in Feb 2015 but thanks so much for posting the 2009 Rich, Dr. Nathan presentation.
Question for you - You could not tolerate the multivitamin - I can't either. You substituted this with a Multimineral.
Did you get the Multimineral from the holistic site, or could you suggest one to me? Thanks

Rich did revise his protocol August 27, 2012 -he took out one of his supplements and substituted
Lecithin in it. I read his Revision on here - published a few weeks before he suddenly died.

He seemed to suggest taking the multivitamin 1st - he said to take each one separately, and to take a very small amount. He really emphasized this in his 2012 Revision!

 

[Helen]

Hi @bsw and @starlily88.

I agree with what have been written in the posts above but I would stress that it is for most people the methylfolate intake that might start adverse reactions ( probably due to increased methylation).

I had two Methylation Pathways Panels, one before taking the supplements and it showed impaired methylation with low reduced glutathione. One year the values were better but still not in normal range. Later I got to know that I have Lyme and two co-infections that surely affect the methylation negatively until they are treated.

I began the protocol with co-factors, low doses as Rich recommends, and then added methylcobalamin. This product was very good for me to help titrate methylfolate carefully that was the next step

http://www.holisticheal.com/methylmate-b-nutritional-supplement.html

Every drop contains 66.7 mcg so it allows you to go really slow. I started with one bottle of this and then changed to capsules when i knew that I could tolerate 400 mcg doses.

For me the 23andme tests was very useful as I got an idea of how severe the MTHFR mutations are and also other mutations that might affect B12 metabolism. The methylation mutations give an idea of if the methylation and glutathione production could be lowered, and in your detox panel you might find mutations (GST; glutathione- s-transferase) that would make it more difficult for you to bind/make use of the glutathione (maybe already low).

About food that might have an impact, a folate rich meal might start up an increased methylation and make you feel bad. Rich had been told from many people who experinced that. Liver e.g. is extremely high in folate. A meal with chicken liver contains about 900 mcg, for good or bad.

Rich´s protocol was made up to be as simple and safe as possible to follow. That means it will not fit all. E.g. he was well aware of that hydroxycobalamine needs to be methylated into methylcobalamine. People with severely impaired methylation may therefore not get any help from HyCbl.

A low level of MeCbl might also affect the Kreb´s cycle and lower adenosylcobalamin. Many people get good effect from supplementing with AdCbl called Dibencozide ( I like Source natural´s) and also other substances like Q10, magnesium citrate and L-carnitine fumarate which all affect ATP and the mitochondria. Rich recommened me to try these when I had severe muscle weakness (that later appeared to be caused by Lyme).

Best of luck!

 

[starlily88]

@Helen, thanks so very much for your information.
Could you explain what you mean "I began the protocol with co-factors - then added methylcobalamin"
Does co-factors mean - doing the very low doses that Rich recommends?

Since Rich did suggest doing the Hydroxycobalamine and hoping it transferred into methylcobalamine - did you already know from your testing, that your body would not do that transformation, so you started out with the
methylcobalamine instead?

If I don't get the testing - I assume I will not know which one to do - the hydroxy or the methylcobalamine??
Is 23andme the laboratory that tests methyl levels?
How does one meansure MTHFR mutations - and what is MTHFR - i assume it is important??

Did you complete Rich's protocol? Did you feel better?
I guess with Lyme disease not so much - but I hope so.

 

[Helen]

Does co-factors mean - doing the very low doses that Rich recommends?

Or something similar. I was on other brands and doses when I added methylfolate and luckily I have never been sensitive to anything.I was just very careful with adding methylfolate.

Since Rich did suggest doing the Hydroxycobalamine and hoping it transferred into methylcobalamine - did you already know from your testing, that your body would not do that transformation, so you started out with the
methylcobalamine instead?

A group of Swedish ME-doctors very experienced when it comes to B12 deficiencies had been treating with MeCbl for long time. I went from bedridden to cross country skiing in about 6 weeks when I had my first treatment with injections.
I then stopped the injections and fell back into deficiency so I would say I know at least so far, that I am B12 dependant.
I tried HyCbl but in three months I was sofabound with symptoms and it took me another three months to get back to where I was before. At that time I had a MPP that showed an impaired methylation.

f I don't get the testing - I assume I will not know which one to do - the hydroxy or the methylcobalamine??

MeCbl doesn´t have to be methylated as HyCbl. Some people, very few, here have witnessed they got problems from MeCbl.

s 23andme the laboratory that tests methyl levels?

No, they do gene testing.

Did you complete Rich's protocol? Did you feel better?
I guess with Lyme disease not so much - but I hope so.

I felt much better, but then the Lyme symptoms invaded me. Thank you, I do hope that when my infections are "cured" I will feel better. At least my doctor, KDM spontaneously told me that I will feel much better in one and a half year. Doctors usually don´t say things like that, at least not the experienced.

 

[xrunner]

Did you get the Multimineral from the holistic site, or could you suggest one to me? Thanks
!

Hi, I used this brand and I think I mostly took half the recommended dosage (for budget reasons)
http://www.amazon.com/Ortho-Molecul...-3&keywords=Ortho+Molecular+Products,+Reacted

It was cheaper from iherb but they discontinued. I think any multimin will do and perhaps it's not even necessary unless you've got specific deficiencies.

 

[starlily88]

@xrunner Thanks for the Ortho Multimineral - I read your post on here from February. Testing for SAMe and SAH is the same as adenosylmethionine and Homocysteine? Is is really important?

I have Endocrinologist that used wrong code for Homocyst. I was charged $450.00 for the test. I fought this for a year, and Endo refused to help me. Now he uses "heart disease" when ordering this for others.

The Ortho Mineral is expensive, wow almost 30 bucks for 120 capsules.
Since I don't well at all on supplements - is it OK to take powder out - and do a tiny amount at a time?
I am nauseous every day from Gastroparesis and colonic inertia - so I really don't eat much, and need feeding tube. Anything I intake is thru IM, IV, or Sublingual. I hope a multimineral is less offensive to my stomach than a multivitamin. Thanks so much.

 

[xrunner]

Hi @starlily88

Is is really important?

Well testing for Homocysteine and Methylmalonic acid (to keep it simpler) was a suggestion to have an idea of wether there might be a methylation partial block. This is much cheaper than running a methylation panel. Important? Not sure, perhaps it can be helpful in monitoring progress.

I have Endocrinologist that used wrong code for Homocyst. I was charged $450.00 for the test.

That's quite unfortunate, I'm sorry, with that sort money one can have a full methylation panel.

Since I don't well at all on supplements - is it OK to take powder out - and do a tiny amount at a time?

I'm very sorry to hear of your digestive problems.
I don't think I'm qualified to give you advice, may be you could ask your doctor whether this sort of supplements is ok for your condition.
There was a time when due to mcs I couldn't tolerate supplements and in my own case staying off completely was most helpful.

I saw the Orthomolecular is now much more expensive than when I tried it. There are certainly other good and cheaper multi mineral brands which could work just as well.
Best wishes.

 

[starlily88]

testing for Homocysteine and Methylmalonic acid (to keep it simpler) was a suggestion

Guess I am not clear on why Homocysteine levels can show partial methylation block but barring spending a fortune on methylation panel, I thank you for the suggestion.
I did find a cheaper Multimineral on Iherb that was highly recommended - thanks for that site.

 

[Gondwanaland]

Guess I am not clear on why Homocysteine levels can show partial methylation block but barring spending a fortune on methylation panel, I thank you for the suggestion.
I did find a cheaper Multimineral on Iherb that was highly recommended - thanks for that site.

Here is a simplifyed methylation chart where you can see that Hcy needs B12 and B9 to be cycled into methionine. There are alternative ways as well, via SAMe and B6 (EDIT- also shown).