• 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 (FM), 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.

question for richvank - methylation + adrenal support

caledonia

Senior Member
I was on Folapro only last year and noticed some detox and a lot of improvement in MCS. Maybe a tiny bit of energy improvement for awhile.

In February this year I added methyl B12. There was some more detox. In May I added adrenal support.

Now it's December and surprise - I no longer need most of my other supplements outside of methylation and adrenal support. I am also tapering off of Zoloft which I've been on for many years due to panic attacks. My energy has been about 5% percent better which is a big gain for me. I've also noticed more improvement in MCS. Also improvement with one or two of my food intolerances.

My question is - what do you think is causing the energy increase, no longer needing the Zoloft/supplements, and food intolerance improvement - the adrenal support alone, or the combination of methylation and adrenal support?

I took the methylation panel and have a classic CFS profile. I took a 24 hour adrenal test and it showed adrenal fatigue with basically a flat line with a slight rise at night (what my naturopath called one of the worst profiles they've ever seen).
 
Messages
4
I took a 24 hour adrenal test and it showed adrenal fatigue with basically a flat line with a slight rise at night (what my naturopath called one of the worst profiles they've ever seen).
Have you considered doing an ACTH stimulation test? Given you produced such poor results for a 24 hour adrenal test (saliva cortisol?), it could be a useful next step. I'd certainly be wanting to discount full blown adrenal insufficiency.
 

caledonia

Senior Member
My other doc had me do a morning cortisol a long time ago which showed "normal". He wants me to do another one whenever the naturopath wants to follow up with another 24 hour cortisol profile.

I'm not sure if that is the same is the ACTH stimulation test, but my doc did mention adrenal insufficiency and it sounds like he feels that test is sufficient to test for it.

The irony is, I been trying to treat my adrenals for several years now. I've tried 5 different things and couldn't tolerate any of them. I'm finally tolerating Adrenal Cortex Extract. I also learned that I was trying to increase the levels too fast on my past attempts. I was on 1/16 of one ACE for 4 months before I was able to increase.

I would think if I had adrenal insufficiency, I would be able to take large amounts of adrenal supps right off the bat. But maybe it doesn't work that way - I don't really know.
 

Joopiter76

Senior Member
Messages
154
you need methylation to generate adrenal hormones, so the key is methylation. I suggest to really use ALL supps rich suggests or even some more from the yasko list. It depends on the genetics where the main problem is located. I have 4 mutations in the MTRR so this seems to be the main problem in my case together with much nitric oxide stress which also blocks methionine synthase activity. If you dont take folINic acid the progress will be much slower.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
If you have a "dry mouth", due to any type of medication (or some supplements I suppose), would a saliva cortisol (any saliva test) be less accurate? I know certain types of medication can make the ACTH Challenge Test feasible. It's not that it is inaccurate, but the body doesn't react to the ACTH. There is another challenge test, but I'm not sure if it is affected.
 

caledonia

Senior Member
If you need methylation to generate adrenal hormones then that would explain why my adrenals are so screwed up.

But it seems to me that if you did adrenal support without the methylation, it would still help the adrenals; but you would never be able to discontinue the adrenal support because the basic mechanism is not working.

My doc was telling me about some of his patients who are like that.

My naturopath has me on a B complex which has the methyl folic acid and B12 in it. I was doing extra C but that's one of the ones I no longer need.

I have only one gene mutation for MTHFR - c677t. In fact, with the one mutation my naturopath wasn't even sure my methylation would be affected, but once I took the methylation panel, you could see how bad everything was screwed up.

I'll look into adding additional methylation supps.
 

caledonia

Senior Member
I did the Vitamin Diagnostics Methylation Panel, the one Rich Vank recommends.

I'm doing electro dermal testing with my naturopath to determine which supps to take or discontinue. That's backed up with self muscle testing with which I can also determine amounts. My doc takes the results of the self muscle testing seriously, which is why he is having me taper off the Zoloft when I called him and told him about my need for extra serotonin dropping. So the extra C is no longer testing good. I'm still getting some C through my multi, and at least one other supp, so apparently that is sufficient at this time. I'm still doing a bunch of magnesium and sea salt 3X in water.

I'm going to see my naturopath in Jan. so I can talk to them then about folinic acid, licorice, retesting, etc.
 

richvank

Senior Member
Messages
2,732
I was on Folapro only last year and noticed some detox and a lot of improvement in MCS. Maybe a tiny bit of energy improvement for awhile.

In February this year I added methyl B12. There was some more detox. In May I added adrenal support.

Now it's December and surprise - I no longer need most of my other supplements outside of methylation and adrenal support. I am also tapering off of Zoloft which I've been on for many years due to panic attacks. My energy has been about 5% percent better which is a big gain for me. I've also noticed more improvement in MCS. Also improvement with one or two of my food intolerances.

My question is - what do you think is causing the energy increase, no longer needing the Zoloft/supplements, and food intolerance improvement - the adrenal support alone, or the combination of methylation and adrenal support?

I took the methylation panel and have a classic CFS profile. I took a 24 hour adrenal test and it showed adrenal fatigue with basically a flat line with a slight rise at night (what my naturopath called one of the worst profiles they've ever seen).

Hi, Caledonia.

I'm happy to hear about the improvements you've been experiencing.

It's hard to say what is doing what when more than one treatment is going on at the same time, as you know.

I'm guessing, but I would say that the methylation treatment is what is giving the fundamental improvement in energy and the other improvements. The reason I'm saying that is that lifting the methylation cycle block should correct the mitochondrial dysfunction, which I believe is responsible for the low energy status in CFS. Improved methylation should also correct the neurotransmitter abnormalities, including serotonin levels, and that should eliminate the need for SSRI drugs. Lifting the methylation cycle block should also help to correct a leaky gut status, which is what gives rise to food intolerances.

I wouldn't say that the adrenal support is not helping also, though. But I think that the main problem in the HPA axis in CFS is due to glutathione depletion in the hypothalamus and pituitary, rather than a problem in the adrenal glands themselves. This seems to be consistent with published research.

In any case, it's wonderful when things are getting better!

Best regards,

Rich
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
i believe adrenal fatigue co-exists in alot of cfs people. The longer we have these infections the longer our adrenals are over worked etc i know my dhea levels have been going down over the years and my last test showed in was under normal range. My morning cortisol was in the lower end of normal range. I have tried dhea and didnt get much out of it but the last few weeks i have been on pregnenolone, which is an upstream hormone that filters down to all other hormones like cortisol, dhea, progesterone and other hormones, so im going this route to try and increase my dhea levels. so far my energy levels have picked up on transdermal pregnenolone and in a few weeks will get blood tests to see what preg has been doing to my other hormones.

cheers!!!
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Go very slowly...

you need methylation to generate adrenal hormones, so the key is methylation. I suggest to really use ALL supps rich suggests or even some more from the yasko list. It depends on the genetics where the main problem is located. I have 4 mutations in the MTRR so this seems to be the main problem in my case together with much nitric oxide stress which also blocks methionine synthase activity. If you dont take folINic acid the progress will be much slower.

I agree that getting the methylation panel is very important, but disagree that one should use 'all' supplements, and maybe even more' to address this -- or at least would caution that one should go very, very slowly, starting with tiny doses, especially if one has a heavy metal problem or a background of environmental toxin exposure.

I am very grateful I had the meth panel done (because it basically proved what had been suspected (and shown up in tests) for years -- that I had a mercury/arsenic problem), but I was prescribed too many methylation supplements at once (or too high doses to start with) and suffered SEVERE reactions, which are still slowly resolving almost a month after taking the last ones.

If one has mercury toxicity (which can be hidden) or arsenic, etc., but detoxification of these toxins has been held up by a partial block in the methylation cycle, then suddenly 'unblocking' that too quickly may cause a lot of problems. I had unbelievably terrible anxiety, plus muscle cramping, twitching, tingling, and numbness which started about a week into the protocol and proceeded to get worse and worse until we figured it out during the first week or so of December.

So...my advice. Go slow, very slow, just to play it safe. If you tolerate the supplements in small doses, then it should be okay to increase them every few weeks or so.

Just my two cents.

Dan
 
Messages
24
Location
Portland, Oregon
Hi, Caledonia.

I'm happy to hear about the improvements you've been experiencing.

It's hard to say what is doing what when more than one treatment is going on at the same time, as you know.

I'm guessing, but I would say that the methylation treatment is what is giving the fundamental improvement in energy and the other improvements. The reason I'm saying that is that lifting the methylation cycle block should correct the mitochondrial dysfunction, which I believe is responsible for the low energy status in CFS. Improved methylation should also correct the neurotransmitter abnormalities, including serotonin levels, and that should eliminate the need for SSRI drugs. Lifting the methylation cycle block should also help to correct a leaky gut status, which is what gives rise to food intolerances.

I wouldn't say that the adrenal support is not helping also, though. But I think that the main problem in the HPA axis in CFS is due to glutathione depletion in the hypothalamus and pituitary, rather than a problem in the adrenal glands themselves. This seems to be consistent with published research.

In any case, it's wonderful when things are getting better!

Best regards,

Rich

Hi Rich,

Ive written to you personally but not here on the forum. Im studying, waiting for some test results. Have a question: based on my detoxification test from Genova Diagnostics, one of my polymorphisms is GSTM1 is absent..no gene there at all. The suggestion from Genova, and my ND has suggested too, that I take glutithione precursors to help this blockage, things such as NAC, glutamine, glycine, magnesium and B6.

If I address JUST the methylation blockage FIRST, would this eventually help me produce glutiathione? Or should I also take the precursors at the same time I start up on supplements.

BTW...Im the one who cant tolerate garlic, so I cant take the neurological formula that Yasko uses, just to jog your memory. (I think my regular vitamin isnt too off the mark, btw.)

Thanks Rich,

Donna
 

jeffrez

Senior Member
Messages
1,112
Location
NY
I did the Vitamin Diagnostics Methylation Panel, the one Rich Vank recommends.

Hmm, the one that no longer seems to exist? Doesn't even look like that company exists anymore. Anyone have a direct link to the actual, order-able, do-able test, if it even exists anymore?

I take it you've read my other posts by this time, so I'll remove them now. My new policy is not to leave stuff up on the internet too long, esp. when it can be linked back to me. hope some of it helped.

Anyone have the actual link to the methylation panel test? Rich? You mention it enough, I would assume you would therefore know where it's available. Thanks in advance to anyone who can provide the actual link.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hmm, the one that no longer seems to exist? Doesn't even look like that company exists anymore. Anyone have a direct link to the actual, order-able, do-able test, if it even exists anymore?

Anyone have the actual link to the methylation panel test?

Hey Mr. Kite,

Trouble is they don't have a website and the company has changed names, but the test is still available. Rich just posted the contact info on another thread:


Health Diagnostics and Research Institute
540 Bordentown Avenue, Suite 4930
South Amboy, NJ 08879
USA
Phone: (732) 721-1234
Fax: (732) 525-3288

Lab Director: Elizabeth Valentine, M.D.

Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone.

Here is how I got it ordered: my doctor faxed them with a request that the kit be sent to my home. She wrote it on her prescription pad which had all her doc info on it. They send you the kit, you get your doc to sign a requisition, get the blood drawn (hospitals will usually do it a a complementary service) and take it to FedEx for overnight delivery.

Some of this could have changed with the re-organization of the lab, but those are the basics.

Good luck!
Sushi
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Hey Mr. Kite,

Trouble is they don't have a website and the company has changed names, but the test is still available. Rich just posted the contact info on another thread:


Health Diagnostics and Research Institute
540 Bordentown Avenue, Suite 4930
South Amboy, NJ 08879
USA
Phone: (732) 721-1234
Fax: (732) 525-3288

Lab Director: Elizabeth Valentine, M.D.

Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone.

Here is how I got it ordered: my doctor faxed them with a request that the kit be sent to my home. She wrote it on her prescription pad which had all her doc info on it. They send you the kit, you get your doc to sign a requisition, get the blood drawn (hospitals will usually do it a a complementary service) and take it to FedEx for overnight delivery.

Some of this could have changed with the re-organization of the lab, but those are the basics.

Good luck!
Sushi

Thank you very much!
 

drex13

Senior Member
Messages
186
Location
Columbus, Ohio
Hey Mr. Kite,

Trouble is they don't have a website and the company has changed names, but the test is still available. Rich just posted the contact info on another thread:


Health Diagnostics and Research Institute
540 Bordentown Avenue, Suite 4930
South Amboy, NJ 08879
USA
Phone: (732) 721-1234
Fax: (732) 525-3288

Lab Director: Elizabeth Valentine, M.D.

Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone.

Here is how I got it ordered: my doctor faxed them with a request that the kit be sent to my home. She wrote it on her prescription pad which had all her doc info on it. They send you the kit, you get your doc to sign a requisition, get the blood drawn (hospitals will usually do it a a complementary service) and take it to FedEx for overnight delivery.

Some of this could have changed with the re-organization of the lab, but those are the basics.

Good luck!
Sushi


If you don't mind my asking, what was the cost of the test ?
Thanks,
Drex
 

aquariusgirl

Senior Member
Messages
1,732
This was the first test that I ran after years of fruitless testing that showed clear abnormalities that responded to treatment.
It was very helpful for me.
Unfortunately, I had gone a long way down the rabbit hole so I've got masses of toxins and infections, & I am working on those now, but I continue to take the supplements & find them helpful, esp. for sleep.
Love, love, love sam-e.
I just wish someone could figure out the optimal sequence of treatments.
 

caledonia

Senior Member
Now that I think about it, I'm going to have to say that the energy part is due to the adrenal support though. My naturopath said I wouldn't feel a difference until about a month, and sure enough 3-4 weeks after starting I noticed an increase in energy. Then it faded out after awhile. Then I increased the dose and felt more energy for awhile. That happened 3 times.