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Unfolded Protein Response and A Possible Treatment for CFS

S

Sidereal

Senior Member
Messages
4,856
@dannybex, taurine makes many of my symptoms worse, including polyuria, arm weakness and heart arrhythmia. TUDCA was energising but I had to ultimately discontinue it because it was making those symptoms worse, just as taurine does. I noticed nothing particularly beneficial from the Jarrow bile acid product so I'm going to try UDCA next.
 
mariovitali

mariovitali

Senior Member
Messages
1,214
@Sidereal

Some questions/comments :

-Are you a vegetarian? Do you take some kind of high quality protein (that normally should contain L-Cysteine)?
-How much TUDCA did you try? As discussed, try starting with a really small dose and evaluate.

Please check Molybdenum, Zinc, Ceruloplasmin, Manganese Levels whenever you can.

My feeling is that you have to go slow with whatever regimen you are trying as you have many years in this condition.
 
dannybex

dannybex

Senior Member
Messages
3,564
Location
Seattle
Sidereal said:
@dannybex, taurine makes many of my symptoms worse, including polyuria, arm weakness and heart arrhythmia. TUDCA was energising but I had to ultimately discontinue it because it was making those symptoms worse, just as taurine does. I noticed nothing particularly beneficial from the Jarrow bile acid product so I'm going to try UDCA next.
Click to expand...

Thanks @Sidereal -- kind of the same thing here with taurine -- increased cramping, twitching and urination, plus I think it made my dry eye situation worse, although it's been about a year since I last tried it, both by itself and as mag taurate.

I used to tolerate it well, in fact found benefits from it. But the way it affects electrolytes (retaining potassium and pushing out sodium?) seems to be not the thing I'm needing, perhaps because my adrenal/kidney function is 'different' than a few years ago...
 
sflorence

sflorence

Senior Member
Messages
134
OK. After taking Jarrow Bile Acids for a few days, I have seen some interesting things.

I seems that it takes about 5-6 hours for the Biles Acids to start working, is this similar for pure TUDCA?
I definitely get a nice "energy boost" 5 hours after taking it. Unfortunately, this boost doesn't last very long, maybe around 4 hours? And it is a very mild boost, nothing like caffeine but more steady and healthy.

So the next morning I wake up with the same fatigue of the day before, no better, no worse. If I take the BIle Acids at night I wake up around 6 hours after taking it with a nice mental clarity and energy. But then I pass out after being up for about an hour (reading books mostly) and wake up another 4 hours later.

So my next trial will be taking the Bile Acids every 5 or 6 hours, maybe that is what TUDCA's half-life is. This may prove to be very interesting!

Side note: I am taking the Bile Acids with a meal and a handful of fish oils. I take 3 pills at a time.

****EDIT***: It seems like I may be expriecing what a few others are going through. Yesterday I felt like I was going through what I know to be a "candida die-off". I will keep people posted.
 
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S

Sidereal

Senior Member
Messages
4,856
mariovitali said:
@Sidereal

Some questions/comments :

-Are you a vegetarian? Do you take some kind of high quality protein (that normally should contain L-Cysteine)?
-How much TUDCA did you try? As discussed, try starting with a really small dose and evaluate.

Please check Molybdenum, Zinc, Ceruloplasmin, Manganese Levels whenever you can.

My feeling is that you have to go slow with whatever regimen you are trying as you have many years in this condition.
Click to expand...

If by high quality protein you mean foods of animal origin, then no, I no longer eat those. I used to eat meat/dairy at every meal because I felt weak and hypoglycemic without it but I was making no long-term progress on this dietary approach and was in fact worsening in some areas like gastroparesis.

Since initiating a very low fat protein-restricted plant-based diet and stopping the consumption of proteins with high methionine/cysteine content, I have made significant improvements and I'm functioning better than I have in years. The initial adaptation period of a few months was extremely rough while the ME/CFS metabolism was forced to change its substrate utilisation and abandon its over-reliance on feeding amino acids into the TCA cycle for energy production. At times I felt like I was literally going to collapse/die but I'm glad I persevered. Ironically, it was only when I dialled down my protein consumption way down to what some would consider dangerously low levels that I stopped continuously wasting muscle / lean tissue.

There is a misconception out there that eating more animal products or protein powders is somehow magically going to turn into more muscle. Instead what happens when you have this sort of illness is that you'll just burn through those aminos and get more ammonia. But I don't want to get into this because diet discussions on this forum tend to turn into emotional ordeals so let's just leave it at that.

Re: TUDCA, I started with one 200 mg dose per day. This was overstimulating and caused flu-like / die-off symptoms. Then I tried 50 mg several times per day but after a few days even that became too much. Plus, the taurine symptoms showed up. I don't think TUDCA is something I'll ever be able to tolerate since even one capsule of taurine completely messes me up. I will let you know how UDCA goes.

dannybex said:
Thanks @Sidereal -- kind of the same thing here with taurine -- increased cramping, twitching and urination, plus I think it made my dry eye situation worse, although it's been about a year since I last tried it, both by itself and as mag taurate.

I used to tolerate it well, in fact found benefits from it. But the way it affects electrolytes (retaining potassium and pushing out sodium?) seems to be not the thing I'm needing, perhaps because my adrenal/kidney function is 'different' than a few years ago...
Click to expand...

@dannybex - yep, twitching, cramping, urination sounds very familiar. Taurine completely messes up my electrolytes. Some people promote taurine as a treatment for atrial fibrillation so clearly whatever cardiac ion channel issue I have is not the same as what most have since taurine causes afib for me. Taurine affects many ion channels in cardiac and skeletal muscles including ATP-sensitive potassium channels and voltage gated calcium channels which is where I think many who are diagnosed with ME/CFS have problems so taurine can be hit or miss in this patient population.
 
Violeta

Violeta

Senior Member
Messages
2,945
Vasopressin is regulated by the heart in some way, too.
(Wrong hormone, although the heart does release a related hormone.)

Is it vasopressin that is involved in the taurine causing frequent urination?
I have this symptoms, too. I don't know yet if taurine makes it worse, I'll have to take note.

I have been wondering if this has anything to do with it for me. Biotoxins.

Would anyone else be interested in starting a new thread on the hormones vasopressin, orexin, and leptin? (Found some other threads, should have checked first.)

And I found this at selfhacked,
"If you’re thin and experience significant fatigue in the day, it’s likely that you have low levels of both orexin and leptin,"

http://www.biotoxinhelp.com/cirs-and-low-msh.html

http://www.ncbi.nlm.nih.gov/pubmed/11392471

Taurine modulates arginine vasopressin-mediated regulation of renal function.
 
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sflorence

sflorence

Senior Member
Messages
134
Quick update on my TUDCA experiment using the Bile Factors by Jarrow.

So after using it for around 4 days, my tongue got black. This used to happen to me in the past so I don't know if it is truly because of the TUDCA. The boosts of energy I thought I felt initially eventfully faded away, and I was no longer experiencing it. It appears that it did not help my digestion at all, and my BMs were still very running and undigested (which gives me the impression I have pancreas problems).

I am not sure if I will be continuing using the TUDCA, I may have to revisit it in the past. I would rather try a pure TUDCA instead of the Bile Factors.

Next up I will try ALPHA GPC. I suspect that choline is a deficiency I have had for a while.
 
mariovitali

mariovitali

Senior Member
Messages
1,214
All,

I am posting a mini-update which i believe is important.

1. We have a new case of a woman with Fibromyalgia for almost 20 years, where her symptoms are significantly better. As she wrote to me, For the first time in all of these years "she is able to do things, that otherwise would give her excruciating pain". Her Regimen is Metafolin, P5P, UDCA 2 times a day (total 500 mg) and Selenium

2. I think that i finally know what was causing excitotoxicity in my case : Impaired L-Cysteine metabolism and possibly low Cysteine dioxygenase levels. The solution : Molybdenum and B2 supplementation (but i only take Molybdenum at the moment).


Please have a look at the following Genes if you have your DNA Data available - the letter denotes the Minor Allele:

('rs13174348', 'A') # Cysteine Dioxygenase
('rs672203', 'G') # Gamma cystathionase (Cystathionine gamma-lyase)
('rs1021737', 'T') # Gamma Cystathionase (Cystathionine gamma-lyase)
('rs2272306', 'A') # Cysteine Sulfinic Acid Decarboxylase

Unfortunately, in the DNA Data that i have, not many chips analyze the genes listed above

I will keep you updated as always.
 
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V

Valentijn

Senior Member
Messages
15,786
mariovitali said:
('rs13174348', 'A')
Click to expand...
Why do you feel that this SNP is relevant? It's pretty far away from any gene, and there's no research indicating it could cause any problems. The minor allele is also nearly as common as the major allele, with a frequency of 41% overall, going up to 75% in some ethnic populations.

mariovitali said:
('rs672203', 'G')
Click to expand...
Again, I see no indication that this allele is at all relevant. And again, it is pretty common.

mariovitali said:
('rs1021737', 'T')
Click to expand...
This one is a missense mutation and it does have an impact, but only when homozygous (TT). The relevant paper is paywalled, so it's not possible to determine if it has a substantial effect or almost no effect at all. It's also fairly common even in homozygous form, with 7.7% of the general population being homozygous.

mariovitali said:
('rs2272306', 'A')
Click to expand...
This is another SNP which looks to have no impact. It's a bit less common with a MAF of 9.5%, but that goes up to 20% in European populations.
 
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