Simplified Methylation Protocol Revised as of Today

[jstefl]

I have been on the SMP since it came out, and was on the previous protocol for a couple of months before that.

My doctor has been totally unwilling to work with me or do the blood testing, so I am on my own here.

I started on the vitamins first. I started at 1/2 tablet dose and worked my way up to two tablets over the course of a couple of months. I noticed that my throat began to clear up right away! It has been red and sore almost all of my life. That was a very encouraging sign for me.

Once I got used to the vits, I added in the other supplements without any problems.

I haven't noticed any other changes beyond my throat. At this point, I don't feel that the results justify the cost. I will continue on the vitamins, but don't want to restock the other supplements. From what I have read, I have given it enough time for things to work if it is going to happen.

Am I making a mistake?

John

 

[maddietod]

7 months update

I had moderate improvement on Rich's protocol during the first month, then went back to where I started. This implied that something was working, but then got blocked again. I kept on for 3 full months, and then decided to do all of the testing Rich recommends that I could do without a doctor.

My results showed gut dysbiosis including off the charts candida. I have the typical methylation markers in the genetic tests, but not as severely as Rich normally sees. Well, my CFS is relatively mild, so that sort of makes sense. My B12 was still low, and I have some heavy metal involvement.

While waiting for test results, I found a naturopath who put me on supplements to support adrenal function. This has helped my energy somewhat; I'm still playing with dosages I shifted to a very low carb diet (tests showed big problems dealing with carbs), and this helped brain fog and tiredness. He also found supplements that are helping my very disturbed sleep; of course this helps with tiredness too.

After getting all my test results, I added one drop to my 2 drops of B12, and added one of Amy Yasko's liver supplements, specifically relevant to my genetic profile. Since this is my most recent change, I can say that this is what is making me feel like something that was stuck is opening up. I've had to reduce my magnesium by half (bowel tolerance) and lower my adrenal supplements to avoid feeling wired and anxious.

I'm starting a concerted attack on the candida next week, and once that's under control, I'll work on the heavy metals. It seems that the gut issues, and the heavy metals issues, are now part of my methylation block, and that I have to work on all of these pieces to resolve this.

I will report in whenever something quantifiable happens. But given the up-and-down nature of this illness, it will always take a while for me to figure out what's real.

Madie

Ps, Rich, thanks for your help figuring all this out!

 

[snowathlete]

Ive just ordered this stuff from HH. There is some overlap with the supplements and vits i am already taking to support my adrenals and immune system, so some of the stuff i have already i will reduce, or shelf for a while, but i basically i will be doing the protocol soon plus a couple of other supps.
I havent run any tests, as in the UK its not as easy.

Rich, how long should i expect to do this protocol before getting some kind of benefit? I know thats hard to answer as it probably varies and i havent had any tests, but is there a ballpark figure?

thanks

 

[Susane]

Maddie,
It's my understanding that you need to work on the heavy metals first as candida shows up to help protect you from them. Candida cleanses have not helped me and I think it's because of the underlying heavy metal issue. Anyone know something differently?

 

[maddietod]

Please tell me what you know, everybody. I'm supposed to start the nystatin etc on Friday.

Madie

 

[leela]

I too had much more success with intractable (2.5 years worth) systemic candidiasis after doing some serious chelation.
I still have very high lead levels, but bringing them down from 175 times (!) the reference range to 25 times (!) the reference range
made it possible for the nystatin, fluconazole etc to work.

If you do take nystatin, be sure to chew one of the daily doses, as the yeast "seed" in the mouth, even if you don't have oral thrush. It is, after all, the beginning of the alimentary canal.

 

[therron]

Please tell me what you know, everybody. I'm supposed to start the nystatin etc on Friday.

Madie

Hi Madie,
I have taken Diflucan for systemic candida, and I really don't think it helped much, also it is very hard on the liver. I have had better results keeping candida in check through diet, but it never really goes away. Recently I had a huge flair due to taking beet juice daily. Anytime I increase carbs or sugars, I'm in trouble....sigh. Currently, I'm trying to focus my research and treatment on gut biofilm protocols which I believe would deal with yeast and metals simultaneously.

therron

 

[snowathlete]

Hi Leela,

Hope your doing alright.

I still have very high lead levels, but bringing them down from 175 times (!) the reference range to 25 times (!) the reference range

Do you have any idea where all this lead came from in the first place?

 

[richvank]

Rich, how long should i expect to do this protocol before getting some kind of benefit? I know thats hard to answer as it probably varies and i havent had any tests, but is there a ballpark figure?

thanks

Hi, Snow.

Here's a quotation from our clinical study poster paper (2009):


"Various patients reported some early exacerbation of symptoms, which in most cases was followed by a greater improvement in symptoms. Three of the patients found it necessary to decrease their dosage frequency to every second or third day for several days, until they could tolerate the full daily dosage schedule.

"Sixteen of 30 patients (53%) reported an initial worsening of symptoms, beginning in most of these cases within 3 or 4 days, but in some cases beginning at up to 2 weeks. Most of the symptoms were mild, and none of the patients discontinued usage of the supplements during the first 3 months. The most common side effects were gastrointestinal (pain, cramps, constipation, or diarrhea), reported by 6 out of 30 patients or 20%; increase in pain, reported by 4 out of 30 or 13%; and increase in fatigue, reported by 3 out of 30 or 10%. Other symptoms, reported by one patient each, were a decrease in appetite, poor sleep, weak legs, flu-like symptoms, and an increase in anxiety and depression.

"For those who experienced improvement, the time to self-reported improvement on the protocol was an average of 5.6 weeks, with a range from immediate improvement (which was rare) to as long as 8 weeks before improvement was experienced."


I hope this treatment will help you.

Best regards,

Rich

 

[Dreambirdie]

Please tell me what you know, everybody. I'm supposed to start the nystatin etc on Friday.

Madie

Hi Madie,

I had a BIG problem with candida overgrowth in the late 80's/early 90's. It began after I was poisoned by a neighbor's toxic spraying. My immune system took a huge dive, I developed a severe case of MCS (on top of the CFS) and became a universal reactor--which meant that I was allergic to just about everything, including most foods I was eating at the time. It was at that point my candida proliferated like never before.

The first thing I had to do was to clear the toxicity from my system, which took several years. Then I began some very difficult anti-candida protocols, which included a diet VERY minimal in carbs and lots of anti-candida supplements, as in large doses of kyolic garlic, pau d'arco tea, grapefruit seed extract, and Chinese herbal prescriptions. It was grueling. I lost a lot of muscle on that restrictive diet, and I would not recommend it. I tried nystatin at that point too, and the die-off was much to hard for me to handle in a weakened state. My gut dysbiosis was so bad that my food fermented instead of digesting, and that putrification led to migraines about twice a week, during which I would vomit up to the point of dry heaves. This went on for about 8 years. It was hell.

AND THEN one day my acupuncturist gave me a Metagenics digestive formula, which contained some herbal bitters and Betaine HCl. This changed my gut almost overnight. The migraines stopped, and the candida died back on its own. Once I had enough STOMACH ACID, the candida was not able to thrive in such prolific way. Why someone didn't recommend this sooner is way beyond me.

I would definitely recommend checking your stomach acid levels to see where they are at. Mine were OBVIOUSLY too low, so I took up to 4 capsules of the Betaine HCl/meal without a problem. At this point I don't need as much of it. If I take too much I get heartburn, and that is my indicator to back down one capsule/meal until I figure what dose works.

Also, taking a probiotic (enteric coated, with at least 10 strains, and at least 5o billion active cultures per dose) is a good idea as well.

Good luck with it.

 

[snowathlete]

Here's a quotation from our clinical study poster paper (2009):


"Various patients reported some early exacerbation of symptoms, which in most cases was followed by a greater improvement in symptoms. Three of the patients found it necessary to decrease their dosage frequency to every second or third day for several days, until they could tolerate the full daily dosage schedule.

"Sixteen of 30 patients (53%) reported an initial worsening of symptoms, beginning in most of these cases within 3 or 4 days, but in some cases beginning at up to 2 weeks. Most of the symptoms were mild, and none of the patients discontinued usage of the supplements during the first 3 months. The most common side effects were gastrointestinal (pain, cramps, constipation, or diarrhea), reported by 6 out of 30 patients or 20%; increase in pain, reported by 4 out of 30 or 13%; and increase in fatigue, reported by 3 out of 30 or 10%. Other symptoms, reported by one patient each, were a decrease in appetite, poor sleep, weak legs, flu-like symptoms, and an increase in anxiety and depression.

"For those who experienced improvement, the time to self-reported improvement on the protocol was an average of 5.6 weeks, with a range from immediate improvement (which was rare) to as long as 8 weeks before improvement was experienced."


I hope this treatment will help you.

Best regards,

Rich

Thanks Rich, thats even more information than i hoped for. I will let you know how it goes.
Best

 

[richvank]

I have been on the SMP since it came out, and was on the previous protocol for a couple of months before that.

My doctor has been totally unwilling to work with me or do the blood testing, so I am on my own here.

I started on the vitamins first. I started at 1/2 tablet dose and worked my way up to two tablets over the course of a couple of months. I noticed that my throat began to clear up right away! It has been red and sore almost all of my life. That was a very encouraging sign for me.

Once I got used to the vits, I added in the other supplements without any problems.

I haven't noticed any other changes beyond my throat. At this point, I don't feel that the results justify the cost. I will continue on the vitamins, but don't want to restock the other supplements. From what I have read, I have given it enough time for things to work if it is going to happen.

Am I making a mistake?

John

Hi, John.

I'm glad to hear that you got some benefit with your throat, but sorry there have not been more improvements.

Ordinarily, I would suggest running the methylation pathways panel from Health Diagnostics to see what is going on, but this requires a doctor's order. You might consider phoning the lab and asking for names of doctors near you who order this panel. The phone number of the lab is (732) 721-1234. The director of the lab is Dr. Elizabeth Valentine.

Another possibility would be to order some tests from www.directlabs.com, which does not require a doctor's order. The Genova Diagnostics Metabolic Analysis Profile includes both methylmalonic acid and formiminoglutamic acid, which will give indirect information about the status of folate, B12, and the methylation cycle. Pyroglutamic acid, on this panel, gives indirect information about the glutathione status. Even better would be the entire NutraEval panel, offered by Genova Diagnostics, also available from www.directlabs.com.

When the methylation treatment does not provide benefit to a person who has ME/CFS, I think the most likely causes are deficiencies in cofactors, elevated mercury or other toxins that can block enzyme function, or infections that are holding glutathione down. Getting the above testing done would be a step toward determining what the roadblock is in your case.

Best regards,

Rich

 

[u&iraok]

Another possibility would be to order some tests from www.directlabs.com, which does not require a doctor's order. The Genova Diagnostics Metabolic Analysis Profile includes both methylmalonic acid and formiminoglutamic acid, which will give indirect information about the status of folate, B12, and the methylation cycle. Pyroglutamic acid, on this panel, gives indirect information about the glutathione status. Even better would be the entire NutraEval panel, offered by Genova Diagnostics, also available from www.directlabs.com.

This is good to know! I've ordered tests from them before. Is this something a layperson could interpret or does it need a doctor? I've done your methlylation protocol and it would be great to get an idea of where I'm at.

 

[richvank]

This is good to know! I've ordered tests from them before. Is this something a layperson could interpret or does it need a doctor? I've done your methlylation protocol and it would be great to get an idea of where I'm at.

Hi, u&i.

There are some doctors who can interpret these tests, and you might be able to get a referral to one near you who uses these tests, from Genova Diagnostics. Most conventional doctors unfortunately are not familiar with them. Generally speaking, if methylmalonic acid and formiminoglutamic acid (figlu) are at least somewhat elevated from zero, it is likely that there is a partial methylation cycle block. If pyroglutamic acid is low-normal or lower, or high-normal or higher, it is likely that glutathione is depleted. Another clue for low glutathione (which is not always present, because the citric acid cycle is often too depressed to see it in ME/CFS) is a big relative drop between citric acid and one of the next two metabolites (cis-aconitic acid or isocitric acid). These are indirect indicators. The methylation pathways panel is better, because it gives direct measurements of the metabolites of interest.

Best regards,

Rich

 

[Snow Leopard]

Does Folinic acid always come in capsules, rather than compounded tablets?

 

[richvank]

Does Folinic acid always come in capsules, rather than compounded tablets?

It is available in tablet form, such as the Source Naturals product "Megafolinic." The advertising can be misleading, some of it suggesting that it is "bioavailable folic acid," but it's folinic.

Best regards,

Rich

 

[Mya Symons]

Hi, Laurie.

Yes, folinic acid and methylfolate are the active coenzyme forms that are available as supplements. Yes, these active forms do compete for absorption from the gut and for transport into cells. Yes, it is possible for either or both to be deficient. Normally, folinic acid can be converted in the body to methylfolate. A sequence of three reactions are necessary to do this. Some people have one or more SNPs in the enzymes that catalyze these reactions, and that can slow them down. In that case, the person may not be able to use folinic acid to make methylfolate readily. NADPH is also necessary for this conversion, and if it is in short supply, that could make the conversion slow, also.

Methylfolate cannot be converted to folinic acid or to other folate forms readily if the methionine synthase reaction is partially blocked. That's why I am including folinic acid in this protocol. It can be used by most people to make other forms of folate that are used in the production of DNA and RNA. I think this is important early in treatment, especially, when the methionine synthase reaction is still significantly blocked.

I understand that lecithin is available from several food sources now. Hopefully people will be able to find one to which they are not allergic.

Best regards,

Rich

Hello. I am trying to start the simplified methylation protocol today, but looking on the internet I find different versions. For the Folic acid, are you still using Folinic acid or are you using methylfolate or Fola Pro (L-5-Methyl Tetrahydrofolate)? Also do you recommend starting out with lecithin or phosphatidylserine complex? Is there a link to your most recent revised methylation protocol somewhere?

One more question: For someone who also has fibromyalgia, would you recommend also taking D-Ribose?

 

[Freddd]

Hello. I am trying to start the simplified methylation protocol today, but looking on the internet I find different versions. For the Folic acid, are you still using Folinic acid or are you using methylfolate or Fola Pro (L-5-Methyl Tetrahydrofolate)? Also do you recommend starting out with lecithin or phosphatidylserine complex? Is there a link to your most recent revised methylation protocol somewhere?

One more question: For someone who also has fibromyalgia, would you recommend also taking D-Ribose?

Hi Mya,

I would suggest trying D-Ribose. However, it comes at the end of this chain in my opinion, and experience; adneosylb12, l-carnitine fumatare, Alpha Lipoic acid and then finally D-Ribose to see if it helps after all those other things useful in producing the ATP in the first place that D-ribose plays a part in recycling. Also, the effect that might be present before those things might disapperar if more ATP is being made in the first place.

Also, in regards to folinic acid, for some people it will cause worse paradoxical folate deficiency than folic acid. FOr those who experience that they will also find problems with vegetable food source folate. For most it appears to be just fine. It's only a disaster for some people. It is important to find out whether you are one of those. I'm working on a questionaire in cooperation with Rich, that hopes to be able to help elicit that information. It will be posted and we will collect some info and then come to whatever comnclusions we each come to. The more focused brainpower we can bring to bear on this the better.

 

[maddietod]

I've been on the SMP since April, and after an initial boost and reversion to baseline, have not seen any improvements. I switched to very low carb eating to combat blood sugar issues, and feel much more stable. I started working with a naturopath in September, and have been taking adrenal glandulars and other adrenal support, which upped my energy a few notches. I am currently in the last week of an intensive campaign to kill off my off-the-charts candida.

My gains from the diet and the adrenal support have been obvious and lasting. I can't tell if the SMP has helped at all.

Any advice about how to proceed? I could stop doing the protocol (but continue with the B12, which feels important), and then start up again after X months, and see what happens. I could do a test or two and see if anything has changed. I could.....???

 

[richvank]

I've been on the SMP since April, and after an initial boost and reversion to baseline, have not seen any improvements. I switched to very low carb eating to combat blood sugar issues, and feel much more stable. I started working with a naturopath in September, and have been taking adrenal glandulars and other adrenal support, which upped my energy a few notches. I am currently in the last week of an intensive campaign to kill off my off-the-charts candida.

My gains from the diet and the adrenal support have been obvious and lasting. I can't tell if the SMP has helped at all.

Any advice about how to proceed? I could stop doing the protocol (but continue with the B12, which feels important, and then start up again after X months, and see what happens. I could do a test or two and see if anything has changed. I could.....???

Hi, madie.

Sorry that the SMP has not kicked the ball through the goal posts. Based on the data I have on your case, I would say that heavy metals toxicity would be one suspect. You might consider doing some chelation. Sodium calcium EDTA (not disodium EDTA) will bind aluminum. I've heard of good results from Andy Cutler's current protocol for mercury chelation.

The other thing that you might consider is to switch to Freddd's protocol. It may be that methylcobalamin will work better for you than hydroxocobalamin. I think there is good evidence that you do have a partial methylation cycle block, and I do think that this needs to be addressed.

Also, recently we have been hearing from Annesse on various threads that raw organic sauerkraut, taken with meals, can do some wonderful things. It does seem to have some attributes that might help the gut function. I think a few people on these forums are giving it a try.

Best regards,

Rich