• 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.

Confused about supplements - please help!

Mog

Messages
91
Location
UK
A practitioner has just given me a lot of supplements to take for mitochondrial resuscitation and for detox. I haven't had the methylation panel done.

I took one Folinic Acid (Kirkman 800mcg) for the first time several days ago and felt really ill for the rest of the day and took a couple of days to feel better again. Could one really have that effect so quickly? Other things that have had a bad effect on me previously, ie. making me feel iller, are Garlic (but not Allicin Max), N-Acetyl Cysteine, L-Methionine, L-Tyrosine, possibly Alpha Lipoic Acid. Is there a connection between these? Is the illness/bad effect a healing reaction and should I persevere, or does it just mean I shouldn't be taking these particular supplements?
There's Folate Metafolin L-5-MTHF in the Multivitamin and B Complex that I'm taking; is that okay to take in view of my reaction to the Folinic Acid?

I'm also confused about the glutamine/glutathione/B12 thing. I've got Reduced Glutathione 100mg, L-Glutamine and Methylcobalamin 1000mcg to take. Which should I start with?

Sorry for all the questions. I've tried to find the answers in the forums but have just got myself even more confused!
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
I cant answer this except to say I would not take the NAC. For many people (those with autistic genes for example and others, such as Fredd...maybe most people ?) it destroys methylation from which it may take 6 months to recover.

What symptoms do you have when you take tyrosine? I have to supplement it. I have trouble making BH4 to process it. It is used to make thyroxine, dopamine, and some adrenal hormones. Possible sources of difficulty could theoretically be too much dopamine (if you have not VH4 difficulties and you have a COMT defect or are eating a food that mimics COMT), or too much thyroxine (are your symptoms that of hyperthyroid?) maybe, or if it drives up your blood pressure I suppose it be making too much of whatever adrenal hormone. I doubt that tyrosine can drive you hyperthyroid or hyperadrenal (whatever that would be called) as you are most likely to run into iodine shortage or something first but people do say they suffer from too much dopamine. I genetically cannot so cant help you there.

I love your icon -- moomin momma! (poppa?!)
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Mog - i dont have any experience with the particular supplements you mention, but it sounds like you are in the sensisitve category - like so many of us.

I would suggest starting with one supplement at a time, at a lower dose if possible and take it for a while, noting any changes that occur, beofre introducing another. For me personally, if i felt worse taking one i would try a lower dose and if that didnt help i would stop it. I just dont feel its right to take anyhting that makes me feel worse. On the other hand it can just be dosage related. When i first tried MB12 injected at 500mcg a day it made me very very wired, but i find that 250mcg a day has a positive effect.

I know this way of doing things is a big faff - i got a list as long as your arm from my doctor and after 2 years have still not introduced tham all. I have picked what works the best for me and left the ones i am not sure about.

Good luck!
Justy x
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
A lot of people take NAC just fine. I take it daily with my other supplements and my CFS is not a problem now. The right dose and brand is good. Hopefully your doctor knows how to help.
Interesting...I had not heard that you were recovered (great!). Can you list exactly what supplements you take to achieve that? Or include a link to where you have listed it elsewhere? I take an I3C/DIM/broccoli that must have cysteine in it and it does not bother me, but that is a different form of cysteine than NAC. I have also taken (not now) milk thistle, yet another form of cysteine, also it did not bother me. I believe I am high-functioning autistic so prolly one of the ones likely to be sensitive to NAC...I have never felt a need to try it because I already get my cysteine in ways I know work for me.
 

Mog

Messages
91
Location
UK
Thanks all for your replies.
Sally, what dose and brand of NAC do you take? I'm glad you are feeling better, that's great.
Justy, thanks for your advice. Unfortunately, a few of the supplements have lots of things in them, some of which are the troublesome ingredients, so I'll have to forego the whole supplement because of them. It's so annoying to think these are things that might help, yet you can't take them. I agree that I don't want to take anything that makes me feel worse and I usually give up on things quickly when I think that they are upsetting me, but I wonder if I should persevere longer and see if the reaction improves and there might be long-term gain.
Triffid - what do you take to get cysteine from in other ways? I didn't know milk thistle was cysteine. I think I can take it okay although I have probably only taken a very small dose of it. I can't remember exactly what was wrong when I took L-tyrosine. I was taking it for my under-active thyroid, which I take thyroxine and lio-thyronine for, and I do have low adrenal. I took it for 8 days and I think it made me feel unwell, and according to notes I took at the time, it made my face flush and gave me a rash on my hand (no idea what that's all about). BTW, that is a confused Moomin Troll!
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Sounds like you have some sulfur pathway issues, if not some kind of sulfur allergy. Most of those supps are sulfur-related. Do you have any amalgams?
 

jeffrez

Senior Member
Messages
1,112
Location
NY
800mcg is a relatively big dose of folate, too. I agree with Justy - if it were me, I'd start much, much lower if I were getting symptoms, maybe like 50-100mcg or even less if necessary. If I found a dose I tolerated, I'd start with that & the methyl b-12 for now & forget about the sulfur supps. Seems like there's something going on there that you need to look into more closely. Sulfur can backfire if your pathways can't handle it, which can be nasty.
 

Mog

Messages
91
Location
UK
Thanks Jeffrez. I had a mouthful of amalgams removed about 3 years ago. How does that relate?
Is there anything you can do about the sulphur intolerances or are you stuck with it and just have to avoid the sulphury things?
Are Glutathione and Glutamine sulphur-related too?
 

jeffrez

Senior Member
Messages
1,112
Location
NY
Thanks Jeffrez. I had a mouthful of amalgams removed about 3 years ago. How does that relate?
Is there anything you can do about the sulphur intolerances or are you stuck with it and just have to avoid the sulphury things?
Are Glutathione and Glutamine sulphur-related too?

The mercury could have clogged or damaged sulfur pathways, or perhaps you did develop some kind of allergic or immune reaction. I'm not sure how you would find that out, but if you chelated somehow (which might be difficult since most Hg chelators are sulfur compounds), maybe the sensitivities would reduce. Or maybe EDTA could work. (?) Just curious: do you have known allergies to stuff like penicillin or aspirin?

Not sure about glutamine, but glutathione is a sulfur molecule. Gluthathione is made from glycine, cysteine, and glutamate, though, so perhaps you can see that there might be some connection there (glutamine is converted to glutamate). Methionine, lipoate, NAC, and garlic are all of course sulfuric.

In my personal experience, limited as it is, the sulfur sensitivities seem to be pretty hard to deal with. Over time they might improve on their own, though. But if you know you're reacting to them, I would at least minimize exposure to/ingestion of them until you had a better sense of what was causing it. Sulfurs are tricky to mess around with, esp. when mercury is involved.
 

Mog

Messages
91
Location
UK
Thanks for the link Sally. That's brilliant that you are getting so much improvement, shows the power of taking the right supplements, and what a difference having a good doctor to guide you must make. Lucky you.
Jeffrez, no I'm not allergic to penicillin or aspirin. I used to take aspirin without problem years ago although it now gives me stomach aches,so I don't take it anymore, but that's not really full-blown allergy. My father was allergic to penicillin.
I didn't do chelation after the amalgams were removed as I didn't know how to do it properly or safely. I did take chlorella at the time to help detox.
So presumably I should avoid sulphur in foods too, especially garlic? Or is it easier to tolerate it in food form?
 

Vegas

Senior Member
Messages
577
Location
Virginia
Reactivity to thiols has been correlated to mercury toxicity. Those thiol foods and supplements causing you trouble have a high affinity for mercury, so when enough thiol groups are introduced they "drag" Hg around in the body and cause unpleasant symptoms from this redistribution. Some of the more common effects would be fatigue and brain fog and body aches. The degree to which someone might experience symptoms is thought to be associated with plasma cysteine levels, the total body burden of mercury, the relative concentration of brain vs. body mercury, and the vulnerability of the particular tissues where redistribution occurs. Sulfur or more correctly, thiol sensitivity, is by no means a universal indication of mercury toxicity, but your history of having a mouthful of amalgams combined with very specific reactions to thiols is a pretty strong piece of circumstantial evidence. When I was at my worst, thiols had little effect on me, and I think the obvious explanation is that I had very low plasma cysteine. As the energy level improved (post-removal & with chelation) I became more reactive, I believe because my cysteine rose. Eventually, the thiol food reaction started to decrease, and it has been steadily fading with chelation.

Your problem with tyrosine could certainly be related to the enzymatic interference of mercury, but certainly there are other possible explanations. Given that you had a big reaction to folinic acid, certainly you are likely to have what RVK calls a partial methylation block. Hg might be a big part of this, but you would still need the folate and b12. Mercury hits one of the enzymes required for catabolism of tyrosine (or at least its metabolites) very hard...and this is a folate dependent reaction. I'm suggesting that the facial flushing you experienced may have resulted from your inability to efficiently metabolize those metabolic byproducts of the breakdown/coversion of tyrosine: Dopamine, noradrenaline, & adrenaline. If you ever have the misfortune of an acute mercury exposure, you will quickly understand what the effects of massive amounts of stress hormones can do to you.

I would advise against taking ALA and EDTA, and since you may have a thiol-food reaction, you might want to try an exclusion trial for 4-5 days to see if you feel better. Here are the foods/supplements to avoid:

http://livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/
 

Mog

Messages
91
Location
UK
Vegas, thanks very much for the explanation and info. I had the amalgam fillings in for at least 25 years, so plenty of time for damage to be done unfortunately. The mention of Coriander/Cilantro on the sulphur food list reminded me that I did try using it after I had the fillings removed, and it had a bad effect and I stopped using it quite quickly. Is there any safe way of chelating? I have started using a FIR sauna once a week (for the purpose of detoxing a chemical which tests reveal is a DNA adduct. Was also given a Detox supplement for that but it contains NAC and methionine, so I can't take it). Will the FIR sauna help get rid of the mercury?
So can I take any of the methylation supplements? Obviously not glutathione. Folate in a different form from folinic acid? And the Methylcobalamin B12? I tried Biocare Vitasorb B12 Liquid Hydroxycobalamine before and I think it had a bad effect too. I'm noticing a depressing trend here - anything and everything appears to be disagreeing with me :(
 
Messages
75
Is there any safe way of chelating?
As far as I know, Cutler protocol consider as relatively safety. Generally, he recommends some options, one of them is 3-4 days on and then a break of at least the same period and taking antioxydents and lots of supplements.

I have started using a FIR sauna once a week (for the purpose of detoxing a chemical which tests reveal is a DNA adduct.
If the sauna includes the head it can be problematic, if it isn't- I'm also not sure about it, it also throw mineral from the body so you have to return them to your body. Cutler doesn't so recommend on it, I read that some ppl had negative symptoms as panic attack but I guess it was waroten on a sauna that included the head.

Did you try a nutrition that stregthen the adrenals (not boosting) or/and help the body in detoxification? Chlorophyl to help the liver?
 

Vegas

Senior Member
Messages
577
Location
Virginia
Vegas, thanks very much for the explanation and info. I had the amalgam fillings in for at least 25 years, so plenty of time for damage to be done unfortunately. The mention of Coriander/Cilantro on the sulphur food list reminded me that I did try using it after I had the fillings removed, and it had a bad effect and I stopped using it quite quickly. Is there any safe way of chelating? I have started using a FIR sauna once a week (for the purpose of detoxing a chemical which tests reveal is a DNA adduct. Was also given a Detox supplement for that but it contains NAC and methionine, so I can't take it). Will the FIR sauna help get rid of the mercury?
So can I take any of the methylation supplements? Obviously not glutathione. Folate in a different form from folinic acid? And the Methylcobalamin B12? I tried Biocare Vitasorb B12 Liquid Hydroxycobalamine before and I think it had a bad effect too. I'm noticing a depressing trend here - anything and everything appears to be disagreeing with me :(

There are quite a few people out there who have had very unpleasant experiences with cilantro. Lasting changes that, from best can be told, involved a concentration of brain mercury. It seems that many of these people now, after messing around with cilantro, have very low tolerances for chelating with ALA. After taking tiny doses of cilantro, I thought my head was going to explode. Some seem to think that it being "natural," makes it preferable. It is a very potent chelator that facilitates movement of Hg, and other metals, across the blood brain barrier. Unfortunately, its pharmacokinetics are unknown, so it would be very unwise to use this. Judging from my reactions, the chelating properties make it such that it would have to be taken very frequently or problems would ensue. In other words the half-life for the phytochemicals that chelate heavy metals appears to be very short, so one could easily concentrate body mercury in the brain.

Cutler's protocol has to be considered the safest chelation protocol, as it involves the use of low, oral doses of chelators, which are taken in such a fashion that the blood levels of the chelator remain reasonably stable. Additionally, in my opinion, Cutler's background and body of work are comparatively much more impressive than any other protocol I have seen. He has reviewed nearly every study available on the subject of heavy metal chelation, analyzed results, compared data across studies, and otherwise done the detailed leg work to study what happened in the relevant studies. I would certainly endorse his chelation protocol.. The protocol does specify for the use of ALA, but only if taken every 3 hours around the clock for approx 3 days or more (a round).

The sauna will increase the excretion of heavy metals to some degree. Hg can be excreted in sweat and exhaled air for that matter, although there isn't a whole lot of data on this. Andy Cutler has commented that a very significant amount of lead can be excreted via sweat. Regardless, most of the mercury is going to come out via feces and urine with ALA and DMSA, respectively. Also, I don't think there is any expectation that one can decrease brain mercury through sweat. I think sauna is generally a good idea, assuming you replenish your electrolytes and do it in moderation. Its ability to help take the load off the liver by accelerating the detoxification of other toxins one accumulates may be equally or more important.

I don't see any reason why you cannot take the methylation supplements, although I would avoid glutathione if Hg toxicity is confirmed. NAC and methionine are not necessary. Keep cutting back on the dosages until the symptoms are tolerable. If this doesn't work, or no improvement is seen within 2-3 months, it might be time to try something else.
 

richvank

Senior Member
Messages
2,732
Hi, Mog.

Molybdenum might help you with the sulfur sensitivity. It forms a cofactor for the sulfite oxidase enzyme. If moly is deficient, sulfite can build up when sulfur-containing substances are metabolized. The symptoms of high sulfite can include headache, rashes, and breathing problems (asthma-like). Some people have benefited from a dosage of molybdenum of 500 micrograms per day. As always, I recommend working with a physician.

Best regards,

Rich
 

Mog

Messages
91
Location
UK
Thanks very much all.
I do take an adrenal glandular and I am currently taking chlorella, although I see that it is sulphurous, so perhaps I shouldn't be doing so; I didn't think I'd had problems with it.

Will consider trying molybdenum, thanks Rich. Does that enable you to take the sulphurous supplements safely or does it just help minimise the effects of sulphur in the diet?

I can't remember exactly what the cilantro did to me but certainly made me feel ill. I didn't take it for longer than a few days and I think I would start with a small dose of it, in tincture form.
Five years ago, before amalgam removal, I had a lymphocyte sensitivity test from a blood test which showed sensitivity to inorganic mercury but not to organic mercury. I had hair mineral analysis done at the same time which showed mercury within acceptable levels. But I don't know if that's valid or not. I had a different lymphocyte sensitivity test done recently and it said that the inorganic mercury was normal but metabisulphite, salicylate, natural gas, nickel and nitrosamines were high (on intracellular calcium levels).
Is superoxide dismutase okay to take? And alpha-ketoglutaric acid?
I am currently doing the FIR sauna once a week. I have been taking magnesium chloride and an electrolyte drink, and am going to get tri-salts. I have been building up heat and time gradually and so far I haven't sweated much at all - (I'm not a sweaty person, hardly sweat at all normally), but hoping that I'll still get benefits from it even if not from the sweating.
 

Vegas

Senior Member
Messages
577
Location
Virginia
Thanks very much all.
I can't remember exactly what the cilantro did to me but certainly made me feel ill. I didn't take it for longer than a few days and I think I would start with a small dose of it, in tincture form.
Five years ago, before amalgam removal, I had a lymphocyte sensitivity test from a blood test which showed sensitivity to inorganic mercury but not to organic mercury. I had hair mineral analysis done at the same time which showed mercury within acceptable levels. But I don't know if that's valid or not

While the utility of hair tests for identifying toxicity is highly controversial, there are a handful of interesting studies demonstrating that Hg toxicity is inversely related Hg concentration in hair tissue. I would not draw any conclusions about the hair test you had unless someone with sufficient expertise has analyzed it.

metabisulphite...there is your molybdenum connection. You will likely benefit from this...the salicylate problem could also be assisted by the sulfate converted via extra moly. The other stuff is really not all that uncommon, although I don't know anything about the natural gas you refer to..

Supplements that enhance SOD should be o.k.. I had decent results from these products marketed to stimulate these enzymes, but zinc and Mn supplementation was more effective. Of course i don't know to what degree Zn and Mn affected SOD versus producing effects via other mechanisms.

I don't have much experience with AKA, but it is not contraindicated for Hg toxicity...I do know that. .I'm assuming your rationale is elevated ammonia?

Certainly need to be very careful if you are barely sweating. I was infinitely more ill when I just about stopped sweating altogether. The inability to sweat is definitely correlated to a sicker patient.