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question for richvank - methylation + adrenal support

caledonia

Senior Member
Here's a $64 million dollar question - have any of you with methylation/adrenal problems tested XMRV+? I haven't been tested myself.

Another way to ask the question is, is there a link between methylation/adrenal problems and XMRV?

In other words, is there just a genetic problem that causes methylation/adrenal problems which turn in the ME/CFS, or would you also need the presence of XMRV to cause this?

It's probably too soon to answer this definitively, but does Rich have any theory, or has anyone tested XMRV+?

I feel like my main problems are methylation/adrenal, yet I fit CCC criteria.
 

drex13

Senior Member
Messages
186
Location
Columbus, Ohio
Hi, Drex.

The last I heard, a few months ago, the cost was $300, and the lab now pays for shipping the samples back to them.

Rich

Thanks, Rich. I don't think my current doctor will go for it, but I'm going to see a very open minded and understanding chiropractor next week. Hopefully I can get her to order the test.
 

richvank

Senior Member
Messages
2,732
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

Hi, Donna.

It's pretty common to have no GSTM1. Many healthy people have this gene missing, too, but the other GST enzymes seem to be able to "cover" for the missing one, at least to some degree.

I agree that building up glutathione would be a good thing to do, and ordinarily the supplements Genova and your ND have suggested would do that.
However, if you have CFS, with a partial methylation cycle block, then I have found out the hard way after about 5 years of trying to help PWCs build up their glutathione by means such as this, that the partial methylation cycle block, which lies upstream of glutathione synthesis in the sulfur metabolism, must be lifted in order to get glutathione to come back to normal and stay there. If the partial methylation cycle block is lifted, glutathione will come back up automatically.

There are also some problems with taking glutamine and NAC in some cases of CFS. Glutamine is readily converted to glutamate in the body, and that can make the excitotoxicity (anxiety, insomnia, "wired" feeling, hypersensitivity of the senses) worse. NAC can move mercury into the brain, if there is a large body burden of it, as is the case in many PWCs.

So I favor focusing on lifting the methylation cycle partial block first. Lately I have been suggesting that taking some liposomal glutathione might help to ease the excitotoxicity when starting the methylation treatment, but I haven't received any feedback on whether that helps or not, so I don't know for sure if it would.

Yes, I recall that you are not able to tolerate garlic, and therefore can't take the Yasko multi. In this case, another multi would probably cover most of it, though there are some additional ingredients in the Yasko multi that are aimed at helping the methylation cycle and related pathways, including the following:

Broccoli florets powder160 mg, Citrus bioflavonoids50 mg, Choline (as bitartrate)25 mg, Inositol25 mg, PABA (para-amino benzoic acid)5 mg, Garlic (Allium sativum) bulb powder200 mg, L-methionine150 mg, Milk thistle (Silybum marianum) seed extract100 mg, N-acetyl-cysteine75 mg, Pine (Pinus maritimus) bark extract25 mg, Taurine250 mg, Turmeric (Curcuma longa) root extract50 mg, Intrinsic Factor5 mg, Trimethylglycine (TMG)50 mg, Free Form Nucleotide Complex100 mg, Boron1 mg, and L-Carnitine (Tartrate)100 mg.

I guess you will just have to do what you have to do about this. That's one of the problems with combined supplements. If you can't tolerate one of the ingredients, you can't take the combined supplement. It's a trade-off, with cost and convenience usually being improved with combined supplements. Dr. Yasko has going more toward combined supplements and sprays lately, because it's very hard to get an autistic child to take so many pills, and they are the main candidates for her methylation treatment, which we have found also works in CFS.

Best regards,

Rich
 

richvank

Senior Member
Messages
2,732
Thanks, Rich. I don't think my current doctor will go for it, but I'm going to see a very open minded and understanding chiropractor next week. Hopefully I can get her to order the test.

O.K., drex. I hope that works out.

Rich
 

richvank

Senior Member
Messages
2,732
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.

Hi, Caledonia.

O.K., hypotheses are fine as far as they go, but there's nothing like experimental data! Thanks for the feedback.

Rich
 

richvank

Senior Member
Messages
2,732
Here's a $64 million dollar question - have any of you with methylation/adrenal problems tested XMRV+? I haven't been tested myself.

Another way to ask the question is, is there a link between methylation/adrenal problems and XMRV?

In other words, is there just a genetic problem that causes methylation/adrenal problems which turn in the ME/CFS, or would you also need the presence of XMRV to cause this?

It's probably too soon to answer this definitively, but does Rich have any theory, or has anyone tested XMRV+?

I feel like my main problems are methylation/adrenal, yet I fit CCC criteria.

Hi, Caledonia.

I think this is an excellent question, and it is one that is very much on my mind these days, too. So far, I don't think anyone knows for sure what the interaction might be between XMRV and methylation. I understand that work is currently underway to try to figure this out. Both Judy Mikovits and Jill James have told me independently that they are collaborating on research into this question.

From a theoretical standpoint, I think that the GD-MCB hypothesis will mesh well with XMRV involvement, if XMRV is proven to be a factor in CFS, which so far appears to be true.
I think it could turn out that XMRV is part of the cause of CFS, or that it becomes activated because of the onset of CFS due to other causes. We just don't know which might be true yet.

It is known that methylation silences the expression of genes. Since the XMRV viral DNA is inserted into human DNA, it seems possible that a deficit in methylation could cause XMRV to be more readily expressed. On the other hand, when XMRV DNA is inserted into the human DNA, it can disrupt the expression of the normal human genes just by being there in a position that interferes with our normal gene expression. So it's conceivable that this could end up causing a methylation cycle block or glutathione depletion, just by being there. It's also known that viruses in general have ways of foiling the immune system, and that may be a way that XMRV could be causal for CFS as well. So there are lots of possibilities at this point, and I don't think it is nailed down yet.

I do feel pretty confident that the partial methylation cycle block is a major feature in the pathogenesis of CFS, based on our good experience with treating it so far. So if XMRV is also a major feature, these two definitely have to mesh in some way. I guess we just have to be patient to see how the research comes out.

Best regards,

Rich
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Here's a $64 million dollar question - have any of you with methylation/adrenal problems tested XMRV+? I haven't been tested myself.

Another way to ask the question is, is there a link between methylation/adrenal problems and XMRV?

Hi Caledonia,

I can answer one part of this question but will leave the rest to those more knowledgeable. I have a partial methylation block (I've done the methylation panel twice--a year apart. Significant improvement after a year on the methylations supplements), and, I am XMRV positive by culture. I know of one other patient who definitely can answer the same, though I'd guess there are many others.

Methylation is necessary to silence the expression of XMRV, so.....:D

Best wishes,
Sushi
 

wciarci

Wenderella
Messages
264
Location
Connecticut
Hi everyone, my post has nothing to do with the last page but I thought I would put my 2cents in. I have had to stop the protocol. The rash is out of control even with pulsing. My family has a history of allergy to sulfur and am wondering if this is playing into it. As far as the rash, my back is now completely covered in sores, as are many other areas and I am black and blue from scratching. Sleep is impossible because of the itching. Damn and I thought this was helping too but I just can't take it. My experience is not typical but ...

Wendy
 

richvank

Senior Member
Messages
2,732
Hi everyone, my post has nothing to do with the last page but I thought I would put my 2cents in. I have had to stop the protocol. The rash is out of control even with pulsing. My family has a history of allergy to sulfur and am wondering if this is playing into it. As far as the rash, my back is now completely covered in sores, as are many other areas and I am black and blue from scratching. Sleep is impossible because of the itching. Damn and I thought this was helping too but I just can't take it. My experience is not typical but ...

Wendy

Hi, Wendy.

I'm so sorry about the terrible rash. What a bummer! I hope you will get relief from it soon.

Rich
 

Alexia

Senior Member
Messages
168
Location
Portugal
Hi Rich,
Thank you very much for the explanation of possible relation between XMRV and the methylation cycle block.
 

rlc

Senior Member
Messages
822
Hi all people with low cortisol results, the test you need to get done is the ACTH stimulation test, it is the one that can determine adrenal insufficiency, a test for serum ACTH and aldosterone should also be done. Information on ACTH stimulation test can be found here http://www.acthstimulationtest.com/ information on how to diagnose Adrenal insuficiuency can be found here http://www.suite101.com/content/adrenalinsufficiency-a1543

It is important to know that Adrenal insufficiency is a very serious illness and should be investigated by a competant doctor ,preferably an endochrinologist, i dont want to alarm people, but it is very important to get low cortisol results investigated properly as adrenal insufficiency, can lead to a adrenal crisis which can very quickly cause death! information about it here
http://www.nlm.nih.gov/medlineplus/ency/article/000357.htm

Please everyone get these low cortisol results properly investigated!!!

All the best
 

Vegas

Senior Member
Messages
577
Location
Virginia
I agree about the seriousness of the adrenal insufficiency issue, but I don't think many here will actually be classified as having adrenal insufficiency. Definitely subnormal, and I'm sure a handful of people have or border on adrenal insufficiency. I took an a.m. cortrosyn test and posted a 27 ug/dl. Endocrinologist said that result was within normal ranges, fatigue specialist said it was way below normal, a friend of mine who is an internist told me they use 25 as a cut off in screening for adrenal insufficiency.
 

rlc

Senior Member
Messages
822
Hi Vegas, the thing with cortisol tests is that they are completly unreliable for diagnosing Adrenal insufficiency,and people can continualy get results within the normal range and still have it, most doctors haven't got a clue about this, and because of this, and the huge similarities between the symptoms of AI and CFS, my advice is for everyone to do whatever they can to get the tests mentioned in this article done http://www.suite101.com/content/adrenalinsufficiency-a1543 because not only is there the risk of death if it is undiagnosed, but also people with it can be returned to full health within a week with the right medication, plus nobody should of been given a diagnosis of CFS with out having these tests done, the criterias say to rule out the likes Addisons and AI etc and the only way to do this is with ACTH stimulation test, but we all know what crap treatment the majority of people are getting Sigh

All the best