methylation: VERY low, very slow.....results

[determined]

Several years ago I told Rich that, if it were possible to start the methylation supplements with just ONE molecule, I would do it! Well, I didn't start then.


But in late January, I decided to start FolaPro and methylcobalamin at miniscule doses.


I should say that I have a very long history with extreme multiple chemical sensitivities and food intolerances (could only eat a handful of foods, and I was basically a prisoner in my home to avoid chemical exposures for a few years) so I have lots of experience getting HUGE reactions from tiny specks of medications and supplements scraped off of a tablet, or emptied from a capsule.

The weakness and fatigue component of this illness started about 20 years ago. The most significant improvement I got was when I was treated with chemotherapy (Rich has pointed out that folinic acid is infused along with the meds). I have also been helped by doxycycline.


So, in late January of this year, I opened a 1,000 mcg capsule of methylcobalamin, removed a speck, and broke off a very small fraction of a Folapro tablet. I emptied both of these into one cup of water. Then, I measured a quarter teaspoon and put it under my tongue. I could only hold it for a few seconds and I have had to stop this sublingual method because my bottom teeth would ache and ache.


To give some perspective on just how small a dose this is, I have only used 4 FolaPro tablets since I began 3 months ago.and realize, that all but approximately 1/200th of that ended up down the drain!


I know that this sounds odd and perhaps unbelievable. But I have a difference in energy. Im not sure where my boundaries are for weakness/fatigue. This in itself is very unusual since most days in the past 20 years I have been right at or even beyond that boundary.


Its very exciting for me but I am resisting the impulse to increase the dose. The idea that some kind of switch has been flipped really resonates for me. I am cautiously increasing my exercise, without forcing it. Usually, when I have walked my dogs, I have been grateful for their constant stopping and sniffing. Now, I find that I am impatient with them, and try to walk without them so I can go faster(!!!). I have even experienced muscle soreness from walking faster and yet I have NOT experienced PEM. Wow.


Rich, I want to thank you for all the information you have provided. I have been following your ideas for years now; I just wish I had acted sooner. The reason I am writing this is to encourage those who may be afraid to gamble with their current state of health. I have enjoyed a half life for several years and I didnt want to risk it on something that could potentially make me feel worse, even for a while. I believe that starting at a VERY small dose is a rational strategy for others like me.

 

[kat0465]

Boy did I need to hear this!!! I have also been sick for 20+years.and have been afraid to try something that will probably make me feel worse before I feel better.
Or have no change at all,just the thought of 5 or 6 more supps has me dragging my feet.

You having no pem is huge!!that's probably my most troublesome symptom, that and the brain fog. Thanks so much for sharing, there's a health food store that carried both supps, so I think I may just try it. Very slowly. Let us know how your doing,and thanks again!!!

Kat

 

[dannybex]

Ys, thanks for posting this. I too have had a very very difficult time taking b12 and any sort of active folates. I've tried several times now, but guess I still need to start with a lower dose.

(If you're doing better at this dose, I personally would be very cautious before increasing it, but there certainly might be a need to do so at some point.)

 

[caledonia]

After using separate supps for a year, I found a B complex that contains both methyl folic acid and methyl B12, so there is only one capsule to deal with.

My general method is to get some empty gel capsules and starting dividing doses in half and half again as necessary. The reason is, it's easy to eyeball 1/2.

So my doses go like this:
1/2
1/4
1/8
1/16
1/32
1/64
1/128
1/256

1/256 is the equivalent of dampening the end of a toothpick and picking up a few grains, which some people have done successfully. I've never needed to go smaller than that, but I like the method of dissolving things in water if you had to.

When you want to try increasing, then you would double. So if you were at 1/256, then after you had adjusted to the dose and it wasn't giving you energy any more, you would try 1/128 and so on.

I've built up to 1/8 over a year (doubled 5 times) and that seems to be my maximum amount.

 

[Mary]

Determined - I'm really happy for you! It looks like you are one of the group who is helped by Rich's protocol. His study showed that it helped something like 2/3 of the people who tried.

I tried doing Rich's protocol off and on for 3-1/2 years and kept detoxing, or so I thought (it screwed up my digestion, made me feel sick and tired), then I read some of Freddd's posts about his protocol and his theory that what many people thought were detox symptoms on Rich's protocol were actually a folate deficiency induced by the simplified meth. supps. I stopped Rich's supplements and tolerate Fred's much better, tho' do seem to be having some potassium issues which I am trying to address.

In any event, 3 months really is not that long, so good for you! That is great news. I hope you continue to improve.

Mary

 

[Mary]

dannybex - have you tried Freddd's protocol? I did not do well on Rich's (after 3-1/2 years), and am tolerating Freddd's much better.

Mary

 

[determined]

Mary, I guess I am using Fredd's protocol in a sense, because I am taking the methylcobalamin. I have also been following the discussion between Rich and Fredd. So I need to thank Fredd also!

Hmmm. I am reading the warning about methylcobalamin damaging tooth enamel. Yikes.

 

[dannybex]

dannybex - have you tried Freddd's protocol? I did not do well on Rich's (after 3-1/2 years), and am tolerating Freddd's much better.

Mary

Hi Mary,

I had severe reactions on Rich's version, but mainly because I was overprescribed the various folates and also too much b12 to start out with. I might also have that CBS upregulation genetic issue...but not sure about that.

But also, as you imply, another possibility, is that it also contained folic acid (which Rich has now deleted from his protocol, because as Freddd and he agree, it can compete for absorption with the active forms) and it also contained folinic acid, (which Freddd says might compete with methyl folates).

So I tried starting with 1/4 tabs of methyl-b12 (basing this on Kurt's experience), but made the mistake of using 5,000mcg tablets, while Kurt had started with 1,000mcgs -- and suffered extreme anxiety/tension/irritability.

I've tried some adenocobalmin instead, and that might be easier for now, but had another strong reaction when I took a 2nd dose today, thinking I could handle it. I may be depleted in too many other cofactors (minerals, trace minerals, fats, etc) so I'll have to try and figure more of this out.

But glad to hear you're doing well!

Freddd and Rich are to be commended on their many efforts trying to help us. If we only had the exact same issues and metabolisms it would be so much easier of course!

Dan

p.s. Just this afternoon I discovered that an iron supplement I was taking has 400mcgs of FOLIC ACID in it -- and some days I'd take two of them. sigh...

 

[maddietod]

Caledonia- What is the B complex you use?

 

[determined]

Dannybex, I think it would be helpful to learn about your SNPs. I am waiting for my results.

 

[richvank]

Hi, determined.

Thanks for posting your experience, and I'm glad that you have figured out a protocol that seems to be working for you. I'm learning a lot from all of you who are posting results, good or not so good. There really does seem to be quite a range in how various people respond to these methylation-type protocols. I agree that individual genetics must have a lot to do with it.
People also vary in their nutritional status, how well their digestive system is working, what their body burdens of various toxins are, whether they are being exposed to toxic molds and are sensitive to them, and whether they have various infections: intracellular bacterial, viral, retroviral, and fungal. I think that all of these can impact the response to this type of treatment. I had initially hoped that there could be a "one-size-fits-all" treatment to make things simple, but that appears to be an illusory goal in view of the accumulating experiential evidence. Thank you again.

Best regards,

Rich

 

[determined]

I agree with Rich. For many people there are other issues that may need to be addressed first. Early on in my illness, it seemed like I couldn't tolerate anything that SHOULD have helped me. And perhaps there are certain manifestations of this illness that wouldn't respond to methylation supplements. For example, does methylation help with weakness/fatigue but not chemical sensitivity or electromagnetic sensitivity?

Perhaps the systems approach to discover the cause of CFS will help sort all this out.

Meanwhile, I am sick! But I am sick with the normal symptoms of being sick - sore throat, headache. It will be interesting to see if I bounce right back after this, back to my higher level of energy from the supplements.

 

[Freddd]

Hi Mary,

I had severe reactions on Rich's version, but mainly because I was overprescribed the various folates and also too much b12 to start out with. I might also have that CBS upregulation genetic issue...but not sure about that.

But also, as you imply, another possibility, is that it also contained folic acid (which Rich has now deleted from his protocol, because as Freddd and he agree, it can compete for absorption with the active forms) and it also contained folinic acid, (which Freddd says might compete with methyl folates).

So I tried starting with 1/4 tabs of methyl-b12 (basing this on Kurt's experience), but made the mistake of using 5,000mcg tablets, while Kurt had started with 1,000mcgs -- and suffered extreme anxiety/tension/irritability.

I've tried some adenocobalmin instead, and that might be easier for now, but had another strong reaction when I took a 2nd dose today, thinking I could handle it. I may be depleted in too many other cofactors (minerals, trace minerals, fats, etc) so I'll have to try and figure more of this out.

But glad to hear you're doing well!

Freddd and Rich are to be commended on their many efforts trying to help us. If we only had the exact same issues and metabolisms it would be so much easier of course!

Dan

p.s. Just this afternoon I discovered that an iron supplement I was taking has 400mcgs of FOLIC ACID in it -- and some days I'd take two of them. sigh...

Hi Dan,

Just this afternoon I discovered that an iron supplement I was taking has 400mcgs of FOLIC ACID in it -- and some days I'd take two of them. sigh...

Don't you just hate it when ...

It's the same problem so many of us have run into, unintended supplements as an additional ingredient in something else. Good luck.

 

[determined]

Update: I am still enjoying higher energy levels on my diluted speck of both methylfolate and mB12. For a month or so, I tried to add diluted specks of other vitamins/minerals such as B6, biotin, thiamin, molybdenum, manganese, but I did it too fast and I can't tell what is helping and what may be a problem (I think manganese has a HUGE negative effect on my mood). I am discontinuing all of these and I plan to start over with just the methylfolate and mB12. I plan to add the others more gradually.

I still have an increase in my chemical sensitivity, but I can still manage so far. I wouldn't want it to get any worse, so I am not thinking of increasing the methylation supplemnents in the near future.

I am really happy with my results so far!

 

[Rockt]

I wonder if I'm taking TOO much. Taking 6 5000mcg Jarrow Mb12's/day, 1200mcg MF, (divided does for each), and 1 Ab12 every other day, plus the co-factors I can tolerate, (C,D, Potassium, AOR B-complex).

 

[richvank]

I wonder if I'm taking TOO much. Taking 6 5000mcg Jarrow Mb12's/day, 1200mcg MF, (divided does for each), and 1 Ab12 every other day, plus the co-factors I can tolerate, (C,D, Potassium, AOR B-complex).

Hi, determined.

Thanks for posting your update. Sounds like "low and slow" is the best plan for you. I hope that you will continue to experience improvement.

Best regards,

Rich

 

[determined]

Wow, Rockt! Did you start out with such large amounts? What results have you experienced?

With the mB12, I take one 1,000 mcg capsule, open it, empty out the amount that would lightly dust the top of a pin, dissolve it in one cup of water, and then I ingest one teaspoon of it!

Earlier in my illness, I was exquisitely sensitive to everything! This has always been my standard approach with medications - I did the same thing with doxycycline.

I admit I am baffled by this - it's hard to believe that this small amount could have a measurable physiological effect. I wonder if it's more like an innoculation, like an allergy shot. Perhaps my immune system is being modulated?

What makes you think you should change your dose? It seems really high to me, but we are all different, who knows?

 

[richvank]

I wonder if I'm taking TOO much. Taking 6 5000mcg Jarrow Mb12's/day, 1200mcg MF, (divided does for each), and 1 Ab12 every other day, plus the co-factors I can tolerate, (C,D, Potassium, AOR B-complex).

Hi, Rockt.

It's difficult to say, because people seem to differ in their response to this type of treatment over a wide range. I've heard from others who have had a similar experience to determined's, and at the other end of the spectrum is the experience that Freddd reports, which is apparently shared by some others, as well.

I think that each person's unique genomics is the main reason for this range in response. I hope that over time we will get a better understanding of this. My current advice is that if a particular protocol doesn't seem to be giving benefit after trying it for a reasonable length of time, it's probably a good idea to do some testing to see what's going on, or to try different dosages or a different protocol. For the protocol I've suggested, based on the response times we observed in a clinical study involving 30 women, I've suggested that 3 months is a good trial time for this protocol. If it isn't helping after 3 months, it's time to test to find out why, or if testing is not financially feasible, to consider trying another protocol. In my opinion, it's best not to be dogmatic about a particular protocol, because of the wide variation in response among different people. I do think, based on lab testing results and reports of response from a pretty large number of PWCs/PWMEs, that the partial methylation cycle block is a core feature in the pathophysiology in nearly all cases of ME/CFS, but the best approach for treating it differs from one person to another.

Best regards,

Rich

 

[Freddd]

Hi Mary,

I had severe reactions on Rich's version, but mainly because I was overprescribed the various folates and also too much b12 to start out with. I might also have that CBS upregulation genetic issue...but not sure about that.

But also, as you imply, another possibility, is that it also contained folic acid (which Rich has now deleted from his protocol, because as Freddd and he agree, it can compete for absorption with the active forms) and it also contained folinic acid, (which Freddd says might compete with methyl folates).

So I tried starting with 1/4 tabs of methyl-b12 (basing this on Kurt's experience), but made the mistake of using 5,000mcg tablets, while Kurt had started with 1,000mcgs -- and suffered extreme anxiety/tension/irritability.

I've tried some adenocobalmin instead, and that might be easier for now, but had another strong reaction when I took a 2nd dose today, thinking I could handle it. I may be depleted in too many other cofactors (minerals, trace minerals, fats, etc) so I'll have to try and figure more of this out.

But glad to hear you're doing well!

Freddd and Rich are to be commended on their many efforts trying to help us. If we only had the exact same issues and metabolisms it would be so much easier of course!

Dan

p.s. Just this afternoon I discovered that an iron supplement I was taking has 400mcgs of FOLIC ACID in it -- and some days I'd take two of them. sigh...

Hi Dan,

There is another problem with iron as well as the unexpected folic acid. Iron taken at the same time as Vit E will prevent absorption and cause an induced Vit E deficiency which can stop healing. Iron should be taken 8-12 hours apart from vitamin E to allow the E to be absorbed.

In my experience extreme response to mb12 is cause by extreme deficiency as the intensity of response is proportionate to amount of mb12 over the "base". So when a person has 1/100 of 1% of what they need and they go up to 1% of what they need, the 100x increase can make a huge effect. Going up from 1% to 10%, while vastly more mb12, is a much smaller percentage change. Approaching equilibrium is approaching a limit and the closer you get to providing all your body can use, the less difference it makes. MCS is a frequent problem and can be caused by both mb12 and Methylfolate deficiencies, separately or together.

 

[therron]

Fredd, Rich, and All-Low-Slow Starters,
I am about 3 months into a low and slow methylation protocol start-up and I am not making progress (actually, I feel more tired, have more muscle problems, and just as much brain fog). I take
200 mcg Solgar Metafolin
2.3 mg Source Naturals AdB12 sublingual
250 mcg. Jarrow Methyl B12 sublingual
(I also take 4.5 mg B-2, 18 mg P5P, 15mg zinc, 1,000 mg VitC, omega 3, 200 mg. magnesium, 2,000i.u Vit D). I have tried to take potassium, but it makes me feel weaker and increases muscle pain and weakness. Salt helped me come out of the potassium fiasco.
I would appreciate advice on what to increase or add at this time. I am in the tired-wired category. Everything affects my sleep, so I sometimes feel as if I am fighting a losing battle in tweaking supplements......but I really want to return to a healthy state.