• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Starting RichVank's Protocol on Deplin?

Messages
78
Hey everyone.

So as of right now I'm taking Deplin (7.5 mgs per day) and Valtrex (1000 mgs per day) as my prescription meds. I have mild and fairly recent beginning of CFS/Fibro and I've been trying to educate myself as much as possible.

I have a neurologist who thought the Deplin would be good sine I have the MTHFR gene mutation (homogyneous) and another GP who wanted to start me on Valtrex for some high herpes titers (I also have high Parvovirus Titers).

I'm also taking other supplements for prostate issues, as well as Coq10, Vitamin D, Vitamin C, Immune supplements, the usual.

My question is can/should I start the methylation protocol while taking Deplin and the other drugs? I know Richvank said Deplin is much stronger than the normal Folinic Acid used in the protocol. Maybe I could start with lesser doses of the other supplements?

PS - I'm not sure how much the neurologist knows what he's talking about..maybe trying Richvank's protocol and stopping the Deplin would be more useful?

Thank you,

Vanguard
 

determined

Senior Member
Messages
307
Location
USA: Deep South
Hi Vanguard,
So....what has the deplin done for you so far? I had a big response to just a tiny speck of both methylfolate and mB12. I would advise you to be very cautious when starting the B12 along with the huge amount of methylfolate.
 
Messages
78
Thanks determined. It's a tough call because I just bought the Deplin and want to keep using it but I really think it might be too much for the protocol.

If anybody has any other opinons/knowledge please chime in. Thanks.
 
Messages
78
Oh about what the Deplin has done so far I've been taking it for about 10 days and can't really tell. I have also taken some B12 in pill form daily (1000mg or 2000mg) I have had bad headaches and fatigue but not sure if that's from this or not.

The doctor who gave me Deplin said it might take 6 weeks to feel a difference.
 

richvank

Senior Member
Messages
2,732
Hi, Vanguard.

In California, where I live, it is against the law for a provider of alternative or complementary health care information to tell a patient to stop taking something a physician has prescribed for them, so I won't do that. However, as you have noted, the dosage of 5L-methyl THF in Deplin is much higher than I have suggested in the simplified methylation protocol. The experience of some others has been that they have needed to start with even lower dosages on this protocol than the suggested amounts, in order to be able to tolerate the symptoms that occur, especially initially. I recommend that you consider this together with your physicians.

Best regards,

Rich
 
Messages
78
Ok, thanks RichVank, you're the man.

Just out of curiosity, shouldn't I be feeling detox from just taking the Deplin and B12 pills then? Or is are the drops needed as well as the other supps.

Hurricane's acomin

Vanguard
 

richvank

Senior Member
Messages
2,732
Ok, thanks RichVank, you're the man.

Just out of curiosity, shouldn't I be feeling detox from just taking the Deplin and B12 pills then? Or is are the drops needed as well as the other supps.

Hurricane's acomin

Vanguard

Hi, Vanguard.

If you are taking B12 in ordinary oral pill form (that is, not sublingually), then your body will not be absorbing enough B12 to lift a partial methylation cycle block. I think you meant mcg rather than mg on your B12 dosages. You will absorb only about 1% of the B12 in the ordinary oral 1000 or 2000 mcg pills, and you need about 100 times that or more to lift a partial methylation cycle block.

Good luck on surviving the storm!

Best regards,

Rich
 

SaraM

Senior Member
Messages
526
Hi, Vanguard.

If you are taking B12 in ordinary oral pill form (that is, not sublingually), then your body will not be absorbing enough B12 to lift a partial methylation cycle block. I think you meant mcg rather than mg on your B12 dosages. You will absorb only about 1% of the B12 in the ordinary oral 1000 or 2000 mcg pills, and you need about 100 times that or more to lift a partial methylation cycle block.

Good luck on surviving the storm!

Best regards,

Rich


Hi Rich,

Forgive me, but I am a little bit confused here. Do you mean we need more than 2000 mg B12 ? I feel I need to take more b12, but I have a few amalgam fillings and other forms of B12 do nothing for me. So, what is the solution?
 

Valentijn

Senior Member
Messages
15,786
I think the usual B12 dose on that protocol is 1mg twice a day, taken in sublingual form as drops or a dissolving tablet. Then your body is probably absorbing a lot more of it, compared to taking it as a normal pill via the stomach.

It's important to distinguish between mg and mcg too ... the first is milligrams, and the second is micrograms (1/1000 of a milligram). 2000mg = 2 grams, which would be way too much in any form. But 2000mcg = 2mg, which is a pretty normal sublingual dose for M.E. purposes.
 

maddietod

Senior Member
Messages
2,860
I'm on this methylation protocol. It calls for specific B12 drops, because the drops are fully absorbed. The pills apparently have to be held in the mouth for a very long time to be fully utilized.

It calls for 2 drops, but I take them both at once.

Madie
 

richvank

Senior Member
Messages
2,732
Hi Rich,

Forgive me, but I am a little bit confused here. Do you mean we need more than 2000 mg B12 ? I feel I need to take more b12, but I have a few amalgam fillings and other forms of B12 do nothing for me. So, what is the solution?

Hi, SaraM.

The dosage of 2 mg of B12 that is in the simplified methylation protocol is chosen as a nominal dosage that works for most people. However, some people need more, depending on their inherited genomics.

I'm guessing that you are referring to methyl B12 and are concerned that higher dosages might move mercury into the brain. This is a theoretical chemical possibility, and has been found to occur in guinea pigs, but there is no published evidence of which I'm aware that it occurs in humans. One approach might be to come up slowly on the methyl B12 dosage, staying alert for neurological symptoms and backing off if they appear.

Another approach might be to use hydroxo B12, but build up SAMe and glutathione. SAMe and glutathione are needed to convert hydroxo B12 into methyl B12 in the cells. It might be possible to build SAMe by taking some TMG to stimulate the BHMT alternate pathway from homocysteine to methionine in the liver and kidneys, and it might be possible to build up glutathione in the cells by using a liposomal glutathione supplement or acetyl glutathione from Allergy Research Group (Nutricology). Both seem capable of delivering glutathione into the cells.

Best regards,

Rich
 
Messages
78
Rich, Thanks for all of your replies.

So, I'm going to continue on the Deplin as it was expensive and my doctor recommends it. I also have some methyl b12, the bottle says 25 drops for one sublingual serving. So, from reading your info if I take a fraction of the dose recommended could that benefit me? Would this help with methylation somewhat? I know it's probably not as good or efficient at doing so as your protocol, but since I'm on Deplin I would like to remove the block at some level.

VanGUARD
 

richvank

Senior Member
Messages
2,732
Rich, Thanks for all of your replies.

So, I'm going to continue on the Deplin as it was expensive and my doctor recommends it. I also have some methyl b12, the bottle says 25 drops for one sublingual serving. So, from reading your info if I take a fraction of the dose recommended could that benefit me? Would this help with methylation somewhat? I know it's probably not as good or efficient at doing so as your protocol, but since I'm on Deplin I would like to remove the block at some level.

VanGUARD

Hi, Vanguard.

I don't know how large the sublingual methyl B12 dosage would be (in micrograms) for 25 drops of your supplement, but if you could start with a small part of a Deplin tablet (say one-tenth of a tablet) and the equivalent of about 2,000 micrograms of methyl B12, that would be equivalent to what is in the simplified protocol. Maybe you could see how well you tolerate that before going to a higher dosage of Deplin.

Best regards,

Rich
 
Messages
78
Rich - ok, I absolutely see what you're saying. However, I've been on the Deplin for a few weeks at 7.5 mg per day and I'm supposed to keep taking it at this dose. You're saying I could lower the Deplin dose and use the methyl b-12, but I'm wondering if I could lower the methyl b-12 amount (maybe to 200 or 300 micrograms) and stay on the high methylfolate amount and still get the same effect? Kind of like an inverse ratio type of thing? Something tells me it wouldn't work this way as I haven't seen you write about it anywhere. Just curious. Thanks.
 

richvank

Senior Member
Messages
2,732
Rich - ok, I absolutely see what you're saying. However, I've been on the Deplin for a few weeks at 7.5 mg per day and I'm supposed to keep taking it at this dose. You're saying I could lower the Deplin dose and use the methyl b-12, but I'm wondering if I could lower the methyl b-12 amount (maybe to 200 or 300 micrograms) and stay on the high methylfolate amount and still get the same effect? Kind of like an inverse ratio type of thing? Something tells me it wouldn't work this way as I haven't seen you write about it anywhere. Just curious. Thanks.

Hi, Vanguard.

Given that you have been on this high dosage of 5L-methyl THF for a few weeks, your folate status is probably pretty good, and the functional deficiency of B12 is probably the limiting factor for your methylation cycle. You could try the approach you suggested and see how it goes. Perhaps you could control your rate of detox, and hence symptoms, by controlling the B12 dosage at a level you could tolerate. In terms of dosages, it's backwards from what is usually needed in ME/CFS. People with ME/CFS usually need an active folate dosage comparable to the RDA for folate, which is 400 to 800 micrograms per day, depending on the category of people (pregnant or not), and they usually need a B12 dosage that is much higher than the RDA for B12, i.e., in the thousands of micrograms region. But if you come up slowly on the B12, and let it limit your rate of improvement in methylation, you could see how it goes.

Best regards,

Rich
 
Messages
78
Thanks for your responses Rich.

One last question haha. I'm using two pieces of your simple cycle right now. Do you think the other three are vital for any progress or can I stick with these two for now?

vaN
 
Messages
78
Last question part 2, lol - This doesn't have much to do with our original topic but I was reading on your site about Diabetes Insipidus and how we may have that. I go to the bathroom a lot and am usually dehydrated. Let's say I get my ADH tested and it's low. What can I do about it? Desmopressin, Florinef - do those work? It seems that one can treat the symptoms with supplementing hormones or they can try to cure the original problem, I just don't know which is better.

Thanks
 

richvank

Senior Member
Messages
2,732
Thanks for your responses Rich.

One last question haha. I'm using two pieces of your simple cycle right now. Do you think the other three are vital for any progress or can I stick with these two for now?

vaN

Hi, Vanguard.

It's hard to say without doing some testing. The other supplements have been included in order to take care of deficiencies and to make sure there are enough of the cofactors and supporting nutrients to help get the methylation cycle and related metabolic pathways back into normal operation. Experience so far suggests that quite a few PWMEs are deficient in one or more of these nutrients, and that will limit progress on the protocol. Unless a person has done testing and found that these levels are adequate, I think it is a good idea to include the other supplements in the protocol.

Best regards,

Rich