CFS is a metabolic condition!

[Aidan Walsh]

A lot of patients are now finding out they have Histamine Intolerance to foods and are low in DAO enzyme which could be causing this illness!! I had a Tryptase serum test done it was normal but I have yet to have done at a private lab the DAO enzyme test to check my levels...This is not an alergy to foods but an intolerance...Low histamines help and/or antihistamine medicines and DAO...Even sea salt has anti histamine properties...Numerous foods cause high histamine intakes...Avoidance and removing ones a person reacts to is vital even foods that are left overs is no good

 

[stridor]

Hi guys,
I believe that whatever else ME is, after we peel back the layers - whether lyme, bacteria/dysbiosis, viruses, or in my case heavy metal toxicity - if we dig deep, at the bottom there will be mitochondrial dysfunction. And whatever else this mitochondrial dysfunction is, it will include a problem with either the amount of oxidation and/or the bioavailability of our inherent antioxidants - mainly glutathione.

I think that in the end attention will be drawn to the astrocytes. They supply (most) glutathione for the neurons. This ties into what @Lillybelle brought here. The astrocytes perform many important tasks - glutathione production, T4 to T3 conversion and dismantling glutamate so that it does not become neurotoxic.

I spent most of my life with Bipolar symptoms. I therefore have had 2 mitochondrial-based disorders in my life. Bipolar resolved after I overrode my thyroid to get enough T3 into my brain. Mercury is stored in the astrocytes which impairs them. I do not believe that this is coincidental. Mitochondria are central to both ailments.

Glutathione is implicated in ME, Bipolar and Hyperplastic Polyposis for which I had my colon removed. Low glutathione = impaired mitochondrial function. I have had 3 major disorders for which low glutathione is a know or highly suspected (major) contributor.

I have enjoyed this discussion. brad

 

[Sushi]

Note: The posts about Lyme Disease and Alzheimer's are now here in a new Thread called Lyme Disease--Alzheimer's: Correlation

 

[Adlyfrost]

Which ever was first- metabolic or infectious agent, chicken or egg, both should be treated.

I also agree that things that are making CFS worse, (like some anti-viral treatments) should not be used (unless their benefits outweigh their detriments, then used only for short period of time).

 

[Leopardtail]

Hi guys,
I believe that whatever else ME is, after we peel back the layers - whether lyme, bacteria/dysbiosis, viruses, or in my case heavy metal toxicity - if we dig deep, at the bottom there will be mitochondrial dysfunction. And whatever else this mitochondrial dysfunction is, it will include a problem with either the amount of oxidation and/or the bioavailability of our inherent antioxidants - mainly glutathione.

I think that in the end attention will be drawn to the astrocytes. They supply (most) glutathione for the neurons. This ties into what @Lillybelle brought here. The astrocytes perform many important tasks - glutathione production, T4 to T3 conversion and dismantling glutamate so that it does not become neurotoxic.

I spent most of my life with Bipolar symptoms. I therefore have had 2 mitochondrial-based disorders in my life. Bipolar resolved after I overrode my thyroid to get enough T3 into my brain. Mercury is stored in the astrocytes which impairs them. I do not believe that this is coincidental. Mitochondria are central to both ailments.

Glutathione is implicated in ME, Bipolar and Hyperplastic Polyposis for which I had my colon removed. Low glutathione = impaired mitochondrial function. I have had 3 major disorders for which low glutathione is a know or highly suspected (major) contributor.

I have enjoyed this discussion. brad

The ATP-Gluthatione axis is a real pain. Too little mitochondrial Glutathione and the mitos are damaged. However making and recycling Glutathione requires ATP hence low ATP = low Glutathione. It's important to remember van Koneynenburg's work was done on patients who'd already received Dr Nathan's mitochondrial, chelation & thyroid therapies.

I recently read a highly interesting paper on Cysinosis and the ATP depletion that comes with it. They may be relevant to RVK's results. Links here and here.

I hope you all find them interesting?

 

[Adlyfrost]

@Leopardtail : Thanks for the articles. With all due respect, they are a little above my brain level right now. A question about them though: was going to start taking n-acetyl cysteine to help general detox. I noticed the articles mentioned cystenosis (too much cysteine) causing glutathione deficiency. Could this supplement be detrimental in light of these articles?

 

[Leopardtail]

Okay,

The names are far too similar

this stuff confuses a lot of people (including me) some tests can't tell the difference between Cysteine (good stuff) and Cystine (not good) hence a lot of researchers talk as if they are the same thing. Rich van Konynenburg referred to Cystine as 'nasty stuff' but supplemented Cysteine.

Patients with Cystinosis have much Cystine, but little Cysteine.

Cystine is made from two molecules of Cysteine. It can be converted back but needs 2x Glutathione to make that happen.

If you suffer kidney stones (or pain) you might need to be careful, otherwise I would not worry about it and try. Should you have worsening of back pain, blurred vision, photophobia, polyuria or thirst, then checking Cystine out may be an idea.

Hope that clears things up a bit.

Leo

 

[Aerose91]

@Leopardtail : Thanks for the articles. With all due respect, they are a little above my brain level right now. A question about them though: was going to start taking n-acetyl cysteine to help general detox. I noticed the articles mentioned cystenosis (too much cysteine) causing glutathione deficiency. Could this supplement be detrimental in light of these articles?

NAC, along with glutathione can be a methyl block if you have a CBS mutation. Normally these things are very good for us but if they clog up the CBS pathway more it causes higher sulphates which can make us worse. The best thing to do is to check your sulphates first (urine strips), many here use them. Once your sulphates are within normal range I believe it's ok to use glutathione NAC.

 

[Valentijn]

NAC, along with glutathione can be a methyl block if you have a CBS mutation. Normally these things are very good for us but if they clog up the CBS pathway more it causes higher sulphates which can make us worse. The best thing to do is to check your sulphates first (urine strips), many here use them. Once your sulphates are within normal range I believe it's ok to use glutathione NAC.

Sorry, but the CBS hysteria is a myth started by Yasko, which coincidentally makes her a lot of money in the process of selling the "cure" to the myth.

The CBS SNPs discussed by Yasko either have no impact or a mild beneficial impact. She's ignoring published research showing that, and instead drawing comparisons to what happens when there's either three copies of the gene present (Downs' Syndrome) or when half the gene is chopped off (in a lab yeast). Unless you have three copies of the gene or half of it missing, it's very unlikely that CBS is causing significant problems.

If you have sulfur problems, they're coming from somewhere else.

 

[Leopardtail]

Sorry, but the CBS hysteria is a myth started by Yasko, which coincidentally makes her a lot of money in the process of selling the "cure" to the myth.

The CBS SNPs discussed by Yasko either have no impact or a mild beneficial impact. She's ignoring published research showing that, and instead drawing comparisons to what happens when there's either three copies of the gene present (Downs' Syndrome) or when half the gene is chopped off (in a lab yeast). Unless you have three copies of the gene or half of it missing, it's very unlikely that CBS is causing significant problems.

If you have sulfur problems, they're coming from somewhere else.

Good to see an alternative perspective on this....
Also worth pointing out Molybdenum deficiency can be a bigger issue and easier to fix

 

[Adlyfrost]

Sorry, but the CBS hysteria is a myth started by Yasko, which coincidentally makes her a lot of money in the process of selling the "cure" to the myth.

The CBS SNPs discussed by Yasko either have no impact or a mild beneficial impact. She's ignoring published research showing that, and instead drawing comparisons to what happens when there's either three copies of the gene present (Downs' Syndrome) or when half the gene is chopped off (in a lab yeast). Unless you have three copies of the gene or half of it missing, it's very unlikely that CBS is causing significant problems.

If you have sulfur problems, they're coming from somewhere else.

Thanks @Valentijn. Now I am thoroughly confused. Considering getting genetic testing done. Is it all a myth or just the cbs mutation part? Was hoping it could help guide me in detox / mitochondrial support supplements.

Keep reading conflicting opinions. Some say trial and error some say genetic testing has been a great guide. Afraid to try methylation which seems thoroughly complicated and confusing without it. Any opinions pro or con welcome.

Since this thread is about whether CFS is a metabolic condition and I want to know whether genetic testing will help me pick out metabolic supplements I hope it is an appropriate question.

 

[Leopardtail]

Thanks @Valentijn. Now I am thoroughly confused. Considering getting genetic testing done. Is it all a myth or just the cbs mutation part? Was hoping it could help guide me in detox / mitochondrial support supplements.

Keep reading conflicting opinions. Some say trial and error some say genetic testing has been a great guide. Afraid to try methylation which seems thoroughly complicated and confusing without it. Any opinions pro or con welcome.

Since this thread is about whether CFS is a metabolic condition and I want to know whether genetic testing will help me pick out metabolic supplements I hope it is an appropriate question.

Genetic testing 'to a point' indicates things you might need for ever.
If your body has gotten in a severe mess - it might not indicate immediate need.

Take your mind off this.... give it a couple of days... then write down anything you feel unclear of....
Most of all don't expect to fully understand everything in one go.

 

[Valentijn]

Thanks @Valentijn. Now I am thoroughly confused. Considering getting genetic testing done. Is it all a myth or just the cbs mutation part?

I don't think that testing is at all useless. But it's important to understand the results, which is hard when certain people are widely spreading disinformation

Most SNPs have little or no impact (such as CBS C699T). Some will have a significant and sizable impact on gene function, but result in reduced enzyme activity, etc, without directly causing disease alone (such as MTHFR C677T). Some SNPs usually result in disease eventually. And some SNPs directly cause disease at birth or earlier. As long as we keep in mind which category each SNP is in, the raw data from 23andMe is pretty useful.

 

[SOC]

Since this thread is about whether CFS is a metabolic condition and I want to know whether genetic testing will help me pick out metabolic supplements I hope it is an appropriate question.

You can start a new thread in the Genetic Testing and SNPS subforum. Or even better, find an existing thread on the topic and add to it. That will help other people looking for this kind of information find it in the future. You can always put a link to this thread in your new post/thread if you think there is relevant information here.

 

[Aerose91]

Sorry, but the CBS hysteria is a myth started by Yasko, which coincidentally makes her a lot of money in the process of selling the "cure" to the myth.

The CBS SNPs discussed by Yasko either have no impact or a mild beneficial impact. She's ignoring published research showing that, and instead drawing comparisons to what happens when there's either three copies of the gene present (Downs' Syndrome) or when half the gene is chopped off (in a lab yeast). Unless you have three copies of the gene or half of it missing, it's very unlikely that CBS is causing significant problems.

If you have sulfur problems, they're coming from somewhere else.

What do u suggest causes sulphate problems? I tested mine and they were off the charts high. Once I stopped glutathione injections it went down quite a bit, now since I've been reducing animal protein it has gone down significantly more. That seems to fit the CBS model very well but I'm open to new ideas

 

[Valentijn]

What do u suggest causes sulphate problems? I tested mine and they were off the charts high. Once I stopped glutathione injections it went down quite a bit, now since I've been reducing animal protein it has gone down significantly more. That seems to fit the CBS model very well but I'm open to new ideas

No idea. But it's not those SNPs

If you're testing using sulfur strips, those aren't designed for medical use and the results will be altered due to varying urine pH levels.

 

[Aerose91]

No idea. But it's not those SNPs

If you're testing using sulfur strips, those aren't designed for medical use and the results will be altered due to varying urine pH levels.

Where did you come to learn that it isn't SNP's that control that.

 

[Aerose91]

On second thought, I guess it doesn't matter if it's a SNP or not. We know where we take in sulphites and that glutathione, NAC etc.. adds to them and how to clear them. So I guess the reason isn't as important

 

[Valentijn]

Where did you come to learn that it isn't SNP's that control that.

I read all of the published research regarding those specific SNPs.

 

[Unduki]

Dr. Kundargi, in Victorville, CA, who has studied CFS since the 70's and I believe, also suffers, told me it was caused by a virus from the herpes family. He prescribes Valtrex, Valaciclovir, and Co-Q10. After 2 years, I'm relatively symptom free and really, really loving my life. I was very ill for over 26 years.